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Patterns of informal care among PuertoRican African American and whitestroke survivorsMelanie Sberna Hinojosa a Barbara Zsembik b amp Maude Rittman cd

a Department of Family and Community Medicine Center forHealthy Communities Medical College of Wisconsin 8701Watertown Plank Road Milwaukee WI 53226 USAb Department of Sociology University of Florida PO Box117330 Gainesville FL 32607-7330 USAc N FloridaS Georgia Veterans Health System RehabilitationOutcomes Research Center 1601 SW Archer Road (151B)Gainesville FL 32308-1197 USAd College of Nursing University of Florida PO Box 100197Gainesville FL 32610-0197 USAPublished online 10 Aug 2009

To cite this article Melanie Sberna Hinojosa Barbara Zsembik amp Maude Rittman (2009) Patternsof informal care among Puerto Rican African American and white stroke survivors Ethnicity ampHealth 146 591-606 DOI 10108013557850903165403

To link to this article httpdxdoiorg10108013557850903165403

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Patterns of informal care among Puerto Rican African Americanand white stroke survivors

Melanie Sberna Hinojosaa Barbara Zsembikb and Maude Rittmancd

aDepartment of Family and Community Medicine Center for Healthy Communities MedicalCollege of Wisconsin 8701 Watertown Plank Road Milwaukee WI 53226 USA bDepartmentof Sociology University of Florida PO Box 117330 Gainesville FL 32607-7330 USAcN FloridaS Georgia Veterans Health System Rehabilitation Outcomes Research Center 1601SW Archer Road (151B) Gainesville FL 32308-1197 USA dCollege of Nursing Universityof Florida PO Box 100197 Gainesville FL 32610-0197 USA

(Received 18 April 2008 final version received 22 June 2009)

Background There has been an increase in the number of non-institutionalizedstroke survivors over the past few decades leading to larger numbers of familycaregivers Less is known about the patterns of informal caregiving within raciallyand ethnically diverse families even though there is greater post-stroke morbidityand mortality for these groupsResearch aims The purpose of our research is to examine the informal caregivingnetworks of white African American and Puerto Rican caregiversMethodology We examine data collected from 118 stroke survivors and caregiversto explore the dynamics of caregiving Data are drawn from a diverse group ofwhites African Americans and Puerto Ricans living on the US Mainland andPuerto Rico at three different time points over the course of 12 monthsAnalysis We examine the size stability change and family dynamics of informalcaregiving networksFindings and implications We find that whites African Americans and PuertoRicans each have differing caregiving structures highlighted by expansion andcontraction across time size of network and relationship to the stroke survivorGreater cultural awareness among health professionals can lead to improvedcoordination of information or formal care services These findings may also beused as a baseline for understanding the caregiving patterns of other Spanish-speaking Caribbean nations

Keywords stroke caregiving raceethnicity

Introduction

Rising levels of stroke prevalence and numbers of non-institutionalized stroke

survivors (Munterner et al 2002) have intensified the burden of long-term personal

and health care a burden disproportionately borne by the informal care network

Ethnic disparities in stroke incidence and mortality further suggest disparities in

post-stroke impairment disability and health care burden Excess stroke incidence

mortality and disability among African Americans are well-documented but the

epidemiological profile of stroke among Latinos1 especially its variation by national

Corresponding author Email mhinojosamcwedu

ISSN 1355-7858 printISSN 1465-3419 online

2009 Taylor amp Francis

DOI 10108013557850903165403

httpwwwinformaworldcom

Ethnicity amp Health

Vol 14 No 6 December 2009 591606

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origin is not well-researched Puerto Ricans appear to have higher levels of stroke

mortality than Cubans or Mexican Americans (Gillium 1995) In contrast Mexican

American stroke survivors appear to have unexpectedly better health at discharge

and at home following a stroke (Ottenbacher et al 2001 Chiou-Tan et al 2006Lisabeth et al 2006) The so-called lsquoepidemiological paradoxrsquo of a lack of health

disparities between Mexican Americans and whites compared to the relative wide

disparities between African Americans and whites has drawn analytical attention to

the positive effects of Latino informal care networks and culture It remains an

empirical question whether these positive effects are similar among other Latino

ethnic groups

The purpose of our research is to examine attributes of the informal care network

of Puerto Rican white and African American stroke survivors Informal careactivities are those undertaken by friends or family members rather than paid

caregiving services offered by trained professionals We will describe the size of

caregiving networks primary caregiver relationships and stability and change across

one year post-stroke We compare Puerto Rican stroke survivors living both in

Puerto Rico and on the US Mainland when they are first discharged home after a

stroke to whites and African Americans living on the US Mainland

Ethnicity stroke and caregiving

In this section we provide links among the relevant literatures on post-acute stroke

disability informal care networks and raceethnic variation in stroke disability and

long-term care First we establish the rising prevalence of stroke-based disability

among community residents and identify raceethnic health disparities Next we

describe the impact on informal care networks of rising disability We note the higher

levels of informal care received by older disabled Latinos and its positive effect on

Mexican-origin stroke survivors We conclude with a description of the key gaps inthe knowledge base and specify the research questions addressed in this analysis

Ethnicity and stroke

Stroke is the leading cause of serious long-term disability affecting more than four

million people in the USA (AHCPR 1995 AHA 2005 Schwamm et al 2005) The

prevalence of stroke survivors and thus stroke-related disability has risen for all

raceethnic groups since 1970 as a result of steep declines in stroke mortality(National Heart Lung and Blood Institute 1994) Approximately 80000 veterans

receiving health care in the veterans health affairs (VHA) are stroke survivors and it

is estimated that 900011000 veterans are hospitalized each year with a new stroke

(Reker and Duncan 2001 VHA 2003)

The greater incidence and mortality among African Americans compared to

whites especially at younger ages and in the lower socioeconomic tiers is well-

documented (Casper et al 1997 Bian et al 2003 Kissela et al 2004 AHA 2005)

There has been less research on Latinos but the extant evidence indicates thatLatinos also have a higher incidence of stroke and greater stroke mortality when

compared to whites (Gillium 1995 Bruno et al 1996 Bruno 1998 Frey et al 1998

Ayala et al 2001 McGruder et al 2004) Stroke mortality in the USA has declined

by about 60 in the past 30 years whereas declines in Puerto Rico and other Latin

592 MS Hinojosa et al

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American populations are more modest (Rodrıguez et al 2006) There appear to be

significant differences among Latino sub-groups indicating higher levels of stroke

mortality among Puerto Ricans than among Cubans or Mexican Americans

(Gillium 1995 Hartmann et al 2001) An apparent higher risk of stroke among

Puerto Ricans than non-Latino whites and other Latino groups warrants the

research attention of this study

Post-acute disability from stroke is higher among African Americans than whites

(Horner et al 1991 2003) Post-acute disability is not as thoroughly studied among

Latinos and studies often yield conflicting results and variation by ethnic sub-group

(Stansbury et al 2005) One study revealed lower functional independence measure

(FIM) scores among Mexican Americans than whites or blacks upon admission for

stroke rehabilitation but comparable FIM scores at discharge (Chiou-Tan et al

2006) Yet another study of Mexican Americans indicates a lower stroke burden than

among whites (Lisabeth et al 2006) Whether Puerto Ricans also experience

relatively low levels of post-acute disability is unknown yet important to learn

because of their higher risk of stroke incidence

Ethnicity and caregiving networks

The increasing number of non-institutionalized stroke survivors over the past 30

years indicates a concomitantly greater family care burden Persons who have limited

post-stroke impairment may live independently in their own homes Nearly 80 of

stroke survivors are discharged into a non-institutional community setting with a

need for continuing personal care and assistance with recovery (Anderson et al

1995) The informal care network particularly the spouse is often named as the

primary source of care How the care network changes over time to accommodate

rehabilitation or health declines is incompletely documented and inadequately

understood (Han and Haley 1999 White et al 2003)

Longitudinal studies of long-term care networks and primary caregivers find

considerable change in network size and composition and in the primary caregiver

(Jette et al 1992 Szinovacz and Davey 2007) Dynamic patterns and trajectories of

care are likely to characterize short-term care demands as well as long-term care

demands Longitudinal studies of long-term caregiving patterns typically gather data

annually or biannually Research shows that post-acute stroke there is a significant

risk of recurrence or mortality at 7 30 and 90 days and six months (Petty et al

2000) and the majority who survive to 90 days are discharged into the community

(Anderson et al 1995) Caregiving data must be collected close to these time points

in order to accurately align caregiving behaviors to the natural history of post-stroke

survival and recovery

The role of social support culturally embedded family systems and informal

family care often have been used to explain unexpectedly positive health outcomes

known as an lsquoepidemiological paradoxrsquo among Latinos (Zsembik 2005) Supportive

evidence is indicated by a higher level of receipt of informal care by disabled older

Latinos than whites (Weiss et al 2005) Post-acute stroke disability and survival

among Latinos are beginning to draw similar attention For example residence in a

high-density Mexican American neighborhood appears to have a positive effect on

survival after a stroke (Eschbach et al 2004) The positive effect of family care has

Ethnicity amp Health 593

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been suggested to explain lower levels of re-hospitalization among Mexican

Americans (Ottenbacher et al 2001)

The sociocultural context in which Puerto Rican stroke survivors function is

shaped by cultural norms values beliefs and behaviors about family disability and

aging Latino culture generally is collectivist-oriented with a greater significance and

value attached to the well-being of the group rather than an individual member

(Marın and Marın 1991 Triandis 1995) Consequently the care structure is also

collectivist (Dilworth-Anderson et al 1999) or composed of a large network of

nuclear and extended family members as potential caregivers The potential of

multiple family caregivers is activated to provide care because of Puerto Rican

cultural values of familism (strong loyalty and obligation to provide support)

respect of older persons and the role of women as caregivers (Zea et al 1994

Delgado and Tennstedt 1997ab Sanchez-Ayendez 1998 Zsembik and Bonilla 2000

Villarreal et al 2005)

In comparison African American care structures are larger than non-Latino

whitesrsquo but are more likely to include friends and neighbors than either Latinos or non-

Latino whites (Lawton et al 1992 Cox 1993) Non-Latino whites have smaller and less

diverse care networks often involving a single primary caregiver an individualistic care

structure (Dilworth-Anderson et al 2002) The typical focus of caregiving research on

the primary caregiver using cross-sectional data (Szinovacz and Davey 2007) is

insufficient to fully describe Puerto Rican (and other Latinosrsquo) caregiving networks

Research questions

Changes in patterns of caregiving including variation in who becomes the primary

caregiver whether caregiving is delivered by multiple caregivers and the living

arrangements of both the stroke survivor and the caregiver(s) are not well-

understood Given Puerto Ricansrsquo lower prevalence of married persons and greater

fluidity of household membership care patterns may be especially complex and

dynamic To address these gaps we examine (1) the caregiving networks of Puerto

Rican caregivers across time including size relationships stability and change and

(2) how these networks differ from whites and African Americans

Data and methods

Data and sample

The data for these analyses are drawn from a longitudinal study of culturally

sensitive models of stroke recovery and caregiving among veterans (people who have

served in the US Armed Services Rittman 2000) Research staff were notified of

admissions for stroke as they occurred and participants meeting the classification for

the international classification of diseases and related health problems (ICD-9) codes

430438 were approachedParticipants were recruited gave consent and were surveyed while they were in the

hospital for the acute stroke event In order to be included in the one-month follow-

up they had to be discharged directly home (ie be medically stable) needed to have a

score of 10 or higher on the Mini Mental State Exam (Folstein et al 1975) and must

have been able to communicate orally at discharge Of the care recipients 61 reported

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as weakness on the right side of their bodies 59 on the left side four reported bilateral

weakness and 11 reported that they had no body weakness No data were collected on

whether the care recipients had sustained prior strokes There was no exclusion of

participants based on comorbidities but their diagnosis was coded throughout the

study by reviewing patient records at each of the three time points

The stroke caregivers either identified themselves or were identified by persons

with stroke as the primary informal caregiver The dyads were selected from five

geographically and ethnically diverse Department of Veterans Affairs Medical

Centers (VAMCs) from 2003 to 2006 These VAMCs were located in South Georgia

Florida Puerto Rico and the US Virgin Islands and were selected specifically to gain

a better understanding of how individuals with stroke and their caregivers manage

the stroke recovery processThe sample was initially comprised of 135 (n270) stroke caregivercare

recipient dyads who were enrolled in the hospital At the one-month follow-up

visit 11 dyads withdrew reducing the final sample to 124 dyads (n248) Of the 124

caregivers 45 were whitenon-Hispanic 28 were African American two were Asian

American and 49 were Puerto Rican (eight residing in the USA and 41 residing in

Puerto Rico) Of the 124 care recipients 45 were whitenon-Hispanic 30 were

African American and 49 were Puerto Rican (eight residing in the USA and 41

residing in Puerto Rico) Of the stroke survivors 122 were men and two were

women and of the caregivers 16 were men and 108 were women The average age

was 6613 (SD1061) for stroke survivors and 590 (SD1408) for caregivers

Of this group we used the data from 118 dyads for our analysis Additional

funding subsequently extended the study for a second year collecting data at 18 and

24 months post-stroke but necessitating participant re-enrollment

Race and ethnicity can be difficult to define as they are often categorizations

imposed on groups by social institutions Racial and ethnic definitions are meant to be

static categories used to classify groups but in reality are often fluid overlapping and

often flawed (Bradby 2003) For the purposes of this study we define our racial and

ethnic groups based on classifications denoted in stroke survivorsrsquo medical records and

by self-designation at the time of the interviews and surveys Whites are those who

identified as Caucasians of non-Hispanic origin African Americans are those who

identified as African American or black of non-Hispanic descent Puerto Ricans are

those of Hispanic descent who are African American black or white that also

identified as of Puerto Rican descent As indicated above some people identifying as

Puerto Rican lived on the US Mainland as well as living in San Juan Puerto Rico

We focus our analysis on the first-year post-stroke partly to capture the dynamics

of caregiving at the onset of post-acute stroke disability This study was approved by

the University of Florida Health Science Center Institutional Review Board (IRB)

and the VAMC Subcommittee for Clinical Investigations (SCI) Informed consent

was obtained prior to enrollment

Measures

Size of informal caregiving network

Primary caregivers were asked to identify if relevant one or two other caregivers

who provided help to them and the stroke survivor These caregivers were unpaid

Ethnicity amp Health 595

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friends or family members not compensated formal caregivers Thus the size of the

caregiving network ranges from one to three (or more) Networks larger than three

cannot be identified

Primary caregiver relationship

Ethnic variation in family and household structures affect the identity of the primary

caregiver relative to the stroke survivor and the living arrangements of the survivor

and caregiver For example lower levels of marriage among Puerto Ricans and

African Americans reduce the likelihood that the caregiver is a spouse (US Census

Bureau 2007a) Higher levels of fertility among Puerto Ricans and African

Americans increase the role that children play in caregiving (US Census Bureau

2007b) Finally extended family coresidential arrangements more common among

Puerto Ricans and African Americans are more likely to yield coresident caregivers

We identified four categories of relationship to the survivor spouse child friend or

lsquootherrsquo We further categorized whether the primary caregiver was coresident or not

Stability and change

We measured stability and change in the caregiver network at six and 12 months

post-discharge First we compared the size of the network to describe network

stability expansion or contraction Next we examined change in the dyad

differentiating change in characteristics of the stroke survivor from those of the

primary caregiver Survivor-based changes include his or her death change in

residence or change in health Change due to the caregiver includes his or her death

or inability to continue providing care and caregiver substitution

Results

We provide descriptive statistics for racialethnic differences in caregiver networks

with regard to characteristics size stability and change over time The character-

istics of the caregiving network at baseline are presented in Table 1 The data reveal

different care structures for Puerto Ricans living in Puerto Rico compared to whites

and African Americans Approximately three-fourths of the total sample report only

one caregiver Puerto Rican caregiver networks were significantly larger than that ofwhites and African Americans across time Nearly half of Puerto Ricans report

multiple caregivers On average 28 of Puerto Rican caregivers had at least one

helper compared to 13 of whites and 9 of African Americans Puerto Rican

caregiving networks also differ in their composition Puerto Ricans are more likely to

rely on children and are less likely to rely on lsquootherrsquo caregivers most of whom are

non-nuclear family members Puerto Ricans and African Americans are more likely

than whites to rely on coresident children Differences between Puerto Ricans and

African Americans suggest that the care network is not simply a lsquominorityrsquo or non-

white effect but signifies a more complex raceethnic cultural and demographic basis

(Aranda 2003 Lugo Steidel and Contreras 2003 Ramos 2004)

The next two tables show change in caregiving networks Change in the size of

networks is shown in Table 2 including change due to post-stroke mortality and

recovery toward independence Puerto Ricans begin recovery at home with larger

596 MS Hinojosa et al

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caregiving networks which contracts in approximately one-third of the sample over

the first year post-stroke (300) In contrast whites and African Americans begin

with smaller networks therefore they are less likely to contract Approximately 10

experience contraction in the size of the caregiving network Although they begin

with larger networks Puerto Ricans are also most likely to experience an expanding

caregiving network Nearly one-fifth of Puerto Rican networks add caregiver(s)

compared to whites (111) and African Americans (48)

Change in network size further depends on time Contraction in Puerto Rican

networks is somewhat more prevalent in the first six months post-stroke compared to

the last half of the year In contrast all of the contractions in African American

networks occur within six months of a stroke whereas contraction in white networks

is somewhat more prevalent 612 months post-stroke Among Puerto Rican

networks expansion is equally likely to occur in both six-month spells (128 and

125) Expansion in both white and African American networks is more likely in

the second half of the year following a stroke The Puerto Rican care network is

more likely to change size than either that of whites or African Americans

Change in the primary caregiverstrokesurvivor dyad is presented in Table 3

The final trio of columns shows the total amount of change in the care dyad

Approximately 90 of whites experience no change over the first year following a

stroke In striking contrast more than one-third of African Americans experience a

change in the care dyad Nearly one-quarter of the Puerto Ricans experience dyadic

change The first and second sets of columns reveal whether dyadic change is due to

change in the stroke survivor or the caregiver Changes in the Puerto Rican dyad are

Table 1 Characteristics () of informal care network at baseline stroke survivors among

veterans

Puerto Rican White African American Total

Number of caregivers (N49) (N43) (N26) (N118)

1 592 (29) 884 (38) 846 (22) 714 (89)

2 327 (16) 93 (4) 77 (2) 183 (22)

3 82 (4) 23 (1) 77 (2) 56 (7)

Caregiver relationship (N49) (N43) (N26) (N118)

Spouse 612 (30) 698 (30) 500 (13) 595 (73)

Child 184 (9) 23 (1) 115 (3) 103 (13)

Friend 102 (5) 93 (4) 77 (2) 87 (11)

Other 102 (5) 186 (8) 308 (8) 167 (21)

Coresident caregiver (N41) (N39) (N20) (N100)

Spouse 756 (31) 795 (31) 400 (8) 700 (70)

Child 122 (5) 00 (0) 150 (3) 80 (8)

Friend 73 (3) 51 (2) 50 (1) 60 (6)

Other 49 (2) 154 (6) 400 (8) 160 (16)

Non-resident caregiver (N8) (N4) (N6) (N18)

Spouse 00 (0) 00 (0) 00 (0) 00 (0)

Child 500 (4) 250 (1) 00 (0) 277 (5)

Friend 250 (2) 500 (2) 333 (2) 333 (6)

Other 250 (2) 255 (1) 667 (4) 389 (7)

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Table 2 Change in size of caregiver networka

Contracting network Expanding network

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

16 months 170 (8) 47 (2) 115 (3) 110 (13) 122 (6) 47 (2) 00 (0) 68 (8)

712 months 125 (6) 83 (4) 00 (0) 80 (10) 102 (5) 70 (3) 38 (1) 76 (9)

112 months 285 (14) 140 (6) 115 (3) 195 (23) 224 (11) 116 (5) 38 (1) 144 (17)

a and (N)

Table 3 Changea in stroke survivorcaregiver dyad

Survivor change Caregiver change Total change

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

16 months 60 (3) 00 (0) 130 (3) 43 (2) 50 (2) 00 (0) 103 (5) 50 (2) 136 (3)

712 months 119 (5) 25 (1) 136 (3) 00 (0) 29 (1) 136 (3) 119 (5) 54 (2) 273 (6)

112 months 179 (8) 25 (1) 266 (6) 43 (2) 79 (3) 138 (3) 222 (10) 104 (4) 402 (9)

No change 837 (41) 953 (41) 769 (20) 959 (47) 930 (40) 885 (23) 796 (39) 907 (39) 654 (17)

a and (N)

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less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

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Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

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associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

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This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

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This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

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AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

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Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

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American populations are more modest (Rodrıguez et al 2006) There appear to be

significant differences among Latino sub-groups indicating higher levels of stroke

mortality among Puerto Ricans than among Cubans or Mexican Americans

(Gillium 1995 Hartmann et al 2001) An apparent higher risk of stroke among

Puerto Ricans than non-Latino whites and other Latino groups warrants the

research attention of this study

Post-acute disability from stroke is higher among African Americans than whites

(Horner et al 1991 2003) Post-acute disability is not as thoroughly studied among

Latinos and studies often yield conflicting results and variation by ethnic sub-group

(Stansbury et al 2005) One study revealed lower functional independence measure

(FIM) scores among Mexican Americans than whites or blacks upon admission for

stroke rehabilitation but comparable FIM scores at discharge (Chiou-Tan et al

2006) Yet another study of Mexican Americans indicates a lower stroke burden than

among whites (Lisabeth et al 2006) Whether Puerto Ricans also experience

relatively low levels of post-acute disability is unknown yet important to learn

because of their higher risk of stroke incidence

Ethnicity and caregiving networks

The increasing number of non-institutionalized stroke survivors over the past 30

years indicates a concomitantly greater family care burden Persons who have limited

post-stroke impairment may live independently in their own homes Nearly 80 of

stroke survivors are discharged into a non-institutional community setting with a

need for continuing personal care and assistance with recovery (Anderson et al

1995) The informal care network particularly the spouse is often named as the

primary source of care How the care network changes over time to accommodate

rehabilitation or health declines is incompletely documented and inadequately

understood (Han and Haley 1999 White et al 2003)

Longitudinal studies of long-term care networks and primary caregivers find

considerable change in network size and composition and in the primary caregiver

(Jette et al 1992 Szinovacz and Davey 2007) Dynamic patterns and trajectories of

care are likely to characterize short-term care demands as well as long-term care

demands Longitudinal studies of long-term caregiving patterns typically gather data

annually or biannually Research shows that post-acute stroke there is a significant

risk of recurrence or mortality at 7 30 and 90 days and six months (Petty et al

2000) and the majority who survive to 90 days are discharged into the community

(Anderson et al 1995) Caregiving data must be collected close to these time points

in order to accurately align caregiving behaviors to the natural history of post-stroke

survival and recovery

The role of social support culturally embedded family systems and informal

family care often have been used to explain unexpectedly positive health outcomes

known as an lsquoepidemiological paradoxrsquo among Latinos (Zsembik 2005) Supportive

evidence is indicated by a higher level of receipt of informal care by disabled older

Latinos than whites (Weiss et al 2005) Post-acute stroke disability and survival

among Latinos are beginning to draw similar attention For example residence in a

high-density Mexican American neighborhood appears to have a positive effect on

survival after a stroke (Eschbach et al 2004) The positive effect of family care has

Ethnicity amp Health 593

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been suggested to explain lower levels of re-hospitalization among Mexican

Americans (Ottenbacher et al 2001)

The sociocultural context in which Puerto Rican stroke survivors function is

shaped by cultural norms values beliefs and behaviors about family disability and

aging Latino culture generally is collectivist-oriented with a greater significance and

value attached to the well-being of the group rather than an individual member

(Marın and Marın 1991 Triandis 1995) Consequently the care structure is also

collectivist (Dilworth-Anderson et al 1999) or composed of a large network of

nuclear and extended family members as potential caregivers The potential of

multiple family caregivers is activated to provide care because of Puerto Rican

cultural values of familism (strong loyalty and obligation to provide support)

respect of older persons and the role of women as caregivers (Zea et al 1994

Delgado and Tennstedt 1997ab Sanchez-Ayendez 1998 Zsembik and Bonilla 2000

Villarreal et al 2005)

In comparison African American care structures are larger than non-Latino

whitesrsquo but are more likely to include friends and neighbors than either Latinos or non-

Latino whites (Lawton et al 1992 Cox 1993) Non-Latino whites have smaller and less

diverse care networks often involving a single primary caregiver an individualistic care

structure (Dilworth-Anderson et al 2002) The typical focus of caregiving research on

the primary caregiver using cross-sectional data (Szinovacz and Davey 2007) is

insufficient to fully describe Puerto Rican (and other Latinosrsquo) caregiving networks

Research questions

Changes in patterns of caregiving including variation in who becomes the primary

caregiver whether caregiving is delivered by multiple caregivers and the living

arrangements of both the stroke survivor and the caregiver(s) are not well-

understood Given Puerto Ricansrsquo lower prevalence of married persons and greater

fluidity of household membership care patterns may be especially complex and

dynamic To address these gaps we examine (1) the caregiving networks of Puerto

Rican caregivers across time including size relationships stability and change and

(2) how these networks differ from whites and African Americans

Data and methods

Data and sample

The data for these analyses are drawn from a longitudinal study of culturally

sensitive models of stroke recovery and caregiving among veterans (people who have

served in the US Armed Services Rittman 2000) Research staff were notified of

admissions for stroke as they occurred and participants meeting the classification for

the international classification of diseases and related health problems (ICD-9) codes

430438 were approachedParticipants were recruited gave consent and were surveyed while they were in the

hospital for the acute stroke event In order to be included in the one-month follow-

up they had to be discharged directly home (ie be medically stable) needed to have a

score of 10 or higher on the Mini Mental State Exam (Folstein et al 1975) and must

have been able to communicate orally at discharge Of the care recipients 61 reported

594 MS Hinojosa et al

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as weakness on the right side of their bodies 59 on the left side four reported bilateral

weakness and 11 reported that they had no body weakness No data were collected on

whether the care recipients had sustained prior strokes There was no exclusion of

participants based on comorbidities but their diagnosis was coded throughout the

study by reviewing patient records at each of the three time points

The stroke caregivers either identified themselves or were identified by persons

with stroke as the primary informal caregiver The dyads were selected from five

geographically and ethnically diverse Department of Veterans Affairs Medical

Centers (VAMCs) from 2003 to 2006 These VAMCs were located in South Georgia

Florida Puerto Rico and the US Virgin Islands and were selected specifically to gain

a better understanding of how individuals with stroke and their caregivers manage

the stroke recovery processThe sample was initially comprised of 135 (n270) stroke caregivercare

recipient dyads who were enrolled in the hospital At the one-month follow-up

visit 11 dyads withdrew reducing the final sample to 124 dyads (n248) Of the 124

caregivers 45 were whitenon-Hispanic 28 were African American two were Asian

American and 49 were Puerto Rican (eight residing in the USA and 41 residing in

Puerto Rico) Of the 124 care recipients 45 were whitenon-Hispanic 30 were

African American and 49 were Puerto Rican (eight residing in the USA and 41

residing in Puerto Rico) Of the stroke survivors 122 were men and two were

women and of the caregivers 16 were men and 108 were women The average age

was 6613 (SD1061) for stroke survivors and 590 (SD1408) for caregivers

Of this group we used the data from 118 dyads for our analysis Additional

funding subsequently extended the study for a second year collecting data at 18 and

24 months post-stroke but necessitating participant re-enrollment

Race and ethnicity can be difficult to define as they are often categorizations

imposed on groups by social institutions Racial and ethnic definitions are meant to be

static categories used to classify groups but in reality are often fluid overlapping and

often flawed (Bradby 2003) For the purposes of this study we define our racial and

ethnic groups based on classifications denoted in stroke survivorsrsquo medical records and

by self-designation at the time of the interviews and surveys Whites are those who

identified as Caucasians of non-Hispanic origin African Americans are those who

identified as African American or black of non-Hispanic descent Puerto Ricans are

those of Hispanic descent who are African American black or white that also

identified as of Puerto Rican descent As indicated above some people identifying as

Puerto Rican lived on the US Mainland as well as living in San Juan Puerto Rico

We focus our analysis on the first-year post-stroke partly to capture the dynamics

of caregiving at the onset of post-acute stroke disability This study was approved by

the University of Florida Health Science Center Institutional Review Board (IRB)

and the VAMC Subcommittee for Clinical Investigations (SCI) Informed consent

was obtained prior to enrollment

Measures

Size of informal caregiving network

Primary caregivers were asked to identify if relevant one or two other caregivers

who provided help to them and the stroke survivor These caregivers were unpaid

Ethnicity amp Health 595

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friends or family members not compensated formal caregivers Thus the size of the

caregiving network ranges from one to three (or more) Networks larger than three

cannot be identified

Primary caregiver relationship

Ethnic variation in family and household structures affect the identity of the primary

caregiver relative to the stroke survivor and the living arrangements of the survivor

and caregiver For example lower levels of marriage among Puerto Ricans and

African Americans reduce the likelihood that the caregiver is a spouse (US Census

Bureau 2007a) Higher levels of fertility among Puerto Ricans and African

Americans increase the role that children play in caregiving (US Census Bureau

2007b) Finally extended family coresidential arrangements more common among

Puerto Ricans and African Americans are more likely to yield coresident caregivers

We identified four categories of relationship to the survivor spouse child friend or

lsquootherrsquo We further categorized whether the primary caregiver was coresident or not

Stability and change

We measured stability and change in the caregiver network at six and 12 months

post-discharge First we compared the size of the network to describe network

stability expansion or contraction Next we examined change in the dyad

differentiating change in characteristics of the stroke survivor from those of the

primary caregiver Survivor-based changes include his or her death change in

residence or change in health Change due to the caregiver includes his or her death

or inability to continue providing care and caregiver substitution

Results

We provide descriptive statistics for racialethnic differences in caregiver networks

with regard to characteristics size stability and change over time The character-

istics of the caregiving network at baseline are presented in Table 1 The data reveal

different care structures for Puerto Ricans living in Puerto Rico compared to whites

and African Americans Approximately three-fourths of the total sample report only

one caregiver Puerto Rican caregiver networks were significantly larger than that ofwhites and African Americans across time Nearly half of Puerto Ricans report

multiple caregivers On average 28 of Puerto Rican caregivers had at least one

helper compared to 13 of whites and 9 of African Americans Puerto Rican

caregiving networks also differ in their composition Puerto Ricans are more likely to

rely on children and are less likely to rely on lsquootherrsquo caregivers most of whom are

non-nuclear family members Puerto Ricans and African Americans are more likely

than whites to rely on coresident children Differences between Puerto Ricans and

African Americans suggest that the care network is not simply a lsquominorityrsquo or non-

white effect but signifies a more complex raceethnic cultural and demographic basis

(Aranda 2003 Lugo Steidel and Contreras 2003 Ramos 2004)

The next two tables show change in caregiving networks Change in the size of

networks is shown in Table 2 including change due to post-stroke mortality and

recovery toward independence Puerto Ricans begin recovery at home with larger

596 MS Hinojosa et al

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2014

caregiving networks which contracts in approximately one-third of the sample over

the first year post-stroke (300) In contrast whites and African Americans begin

with smaller networks therefore they are less likely to contract Approximately 10

experience contraction in the size of the caregiving network Although they begin

with larger networks Puerto Ricans are also most likely to experience an expanding

caregiving network Nearly one-fifth of Puerto Rican networks add caregiver(s)

compared to whites (111) and African Americans (48)

Change in network size further depends on time Contraction in Puerto Rican

networks is somewhat more prevalent in the first six months post-stroke compared to

the last half of the year In contrast all of the contractions in African American

networks occur within six months of a stroke whereas contraction in white networks

is somewhat more prevalent 612 months post-stroke Among Puerto Rican

networks expansion is equally likely to occur in both six-month spells (128 and

125) Expansion in both white and African American networks is more likely in

the second half of the year following a stroke The Puerto Rican care network is

more likely to change size than either that of whites or African Americans

Change in the primary caregiverstrokesurvivor dyad is presented in Table 3

The final trio of columns shows the total amount of change in the care dyad

Approximately 90 of whites experience no change over the first year following a

stroke In striking contrast more than one-third of African Americans experience a

change in the care dyad Nearly one-quarter of the Puerto Ricans experience dyadic

change The first and second sets of columns reveal whether dyadic change is due to

change in the stroke survivor or the caregiver Changes in the Puerto Rican dyad are

Table 1 Characteristics () of informal care network at baseline stroke survivors among

veterans

Puerto Rican White African American Total

Number of caregivers (N49) (N43) (N26) (N118)

1 592 (29) 884 (38) 846 (22) 714 (89)

2 327 (16) 93 (4) 77 (2) 183 (22)

3 82 (4) 23 (1) 77 (2) 56 (7)

Caregiver relationship (N49) (N43) (N26) (N118)

Spouse 612 (30) 698 (30) 500 (13) 595 (73)

Child 184 (9) 23 (1) 115 (3) 103 (13)

Friend 102 (5) 93 (4) 77 (2) 87 (11)

Other 102 (5) 186 (8) 308 (8) 167 (21)

Coresident caregiver (N41) (N39) (N20) (N100)

Spouse 756 (31) 795 (31) 400 (8) 700 (70)

Child 122 (5) 00 (0) 150 (3) 80 (8)

Friend 73 (3) 51 (2) 50 (1) 60 (6)

Other 49 (2) 154 (6) 400 (8) 160 (16)

Non-resident caregiver (N8) (N4) (N6) (N18)

Spouse 00 (0) 00 (0) 00 (0) 00 (0)

Child 500 (4) 250 (1) 00 (0) 277 (5)

Friend 250 (2) 500 (2) 333 (2) 333 (6)

Other 250 (2) 255 (1) 667 (4) 389 (7)

Ethnicity amp Health 597

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2014

Table 2 Change in size of caregiver networka

Contracting network Expanding network

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

16 months 170 (8) 47 (2) 115 (3) 110 (13) 122 (6) 47 (2) 00 (0) 68 (8)

712 months 125 (6) 83 (4) 00 (0) 80 (10) 102 (5) 70 (3) 38 (1) 76 (9)

112 months 285 (14) 140 (6) 115 (3) 195 (23) 224 (11) 116 (5) 38 (1) 144 (17)

a and (N)

Table 3 Changea in stroke survivorcaregiver dyad

Survivor change Caregiver change Total change

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

16 months 60 (3) 00 (0) 130 (3) 43 (2) 50 (2) 00 (0) 103 (5) 50 (2) 136 (3)

712 months 119 (5) 25 (1) 136 (3) 00 (0) 29 (1) 136 (3) 119 (5) 54 (2) 273 (6)

112 months 179 (8) 25 (1) 266 (6) 43 (2) 79 (3) 138 (3) 222 (10) 104 (4) 402 (9)

No change 837 (41) 953 (41) 769 (20) 959 (47) 930 (40) 885 (23) 796 (39) 907 (39) 654 (17)

a and (N)

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less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

Ethnicity amp Health 599

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Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

60

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2014

associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

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This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

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This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

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nloa

ded

by [

UQ

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rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

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been suggested to explain lower levels of re-hospitalization among Mexican

Americans (Ottenbacher et al 2001)

The sociocultural context in which Puerto Rican stroke survivors function is

shaped by cultural norms values beliefs and behaviors about family disability and

aging Latino culture generally is collectivist-oriented with a greater significance and

value attached to the well-being of the group rather than an individual member

(Marın and Marın 1991 Triandis 1995) Consequently the care structure is also

collectivist (Dilworth-Anderson et al 1999) or composed of a large network of

nuclear and extended family members as potential caregivers The potential of

multiple family caregivers is activated to provide care because of Puerto Rican

cultural values of familism (strong loyalty and obligation to provide support)

respect of older persons and the role of women as caregivers (Zea et al 1994

Delgado and Tennstedt 1997ab Sanchez-Ayendez 1998 Zsembik and Bonilla 2000

Villarreal et al 2005)

In comparison African American care structures are larger than non-Latino

whitesrsquo but are more likely to include friends and neighbors than either Latinos or non-

Latino whites (Lawton et al 1992 Cox 1993) Non-Latino whites have smaller and less

diverse care networks often involving a single primary caregiver an individualistic care

structure (Dilworth-Anderson et al 2002) The typical focus of caregiving research on

the primary caregiver using cross-sectional data (Szinovacz and Davey 2007) is

insufficient to fully describe Puerto Rican (and other Latinosrsquo) caregiving networks

Research questions

Changes in patterns of caregiving including variation in who becomes the primary

caregiver whether caregiving is delivered by multiple caregivers and the living

arrangements of both the stroke survivor and the caregiver(s) are not well-

understood Given Puerto Ricansrsquo lower prevalence of married persons and greater

fluidity of household membership care patterns may be especially complex and

dynamic To address these gaps we examine (1) the caregiving networks of Puerto

Rican caregivers across time including size relationships stability and change and

(2) how these networks differ from whites and African Americans

Data and methods

Data and sample

The data for these analyses are drawn from a longitudinal study of culturally

sensitive models of stroke recovery and caregiving among veterans (people who have

served in the US Armed Services Rittman 2000) Research staff were notified of

admissions for stroke as they occurred and participants meeting the classification for

the international classification of diseases and related health problems (ICD-9) codes

430438 were approachedParticipants were recruited gave consent and were surveyed while they were in the

hospital for the acute stroke event In order to be included in the one-month follow-

up they had to be discharged directly home (ie be medically stable) needed to have a

score of 10 or higher on the Mini Mental State Exam (Folstein et al 1975) and must

have been able to communicate orally at discharge Of the care recipients 61 reported

594 MS Hinojosa et al

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as weakness on the right side of their bodies 59 on the left side four reported bilateral

weakness and 11 reported that they had no body weakness No data were collected on

whether the care recipients had sustained prior strokes There was no exclusion of

participants based on comorbidities but their diagnosis was coded throughout the

study by reviewing patient records at each of the three time points

The stroke caregivers either identified themselves or were identified by persons

with stroke as the primary informal caregiver The dyads were selected from five

geographically and ethnically diverse Department of Veterans Affairs Medical

Centers (VAMCs) from 2003 to 2006 These VAMCs were located in South Georgia

Florida Puerto Rico and the US Virgin Islands and were selected specifically to gain

a better understanding of how individuals with stroke and their caregivers manage

the stroke recovery processThe sample was initially comprised of 135 (n270) stroke caregivercare

recipient dyads who were enrolled in the hospital At the one-month follow-up

visit 11 dyads withdrew reducing the final sample to 124 dyads (n248) Of the 124

caregivers 45 were whitenon-Hispanic 28 were African American two were Asian

American and 49 were Puerto Rican (eight residing in the USA and 41 residing in

Puerto Rico) Of the 124 care recipients 45 were whitenon-Hispanic 30 were

African American and 49 were Puerto Rican (eight residing in the USA and 41

residing in Puerto Rico) Of the stroke survivors 122 were men and two were

women and of the caregivers 16 were men and 108 were women The average age

was 6613 (SD1061) for stroke survivors and 590 (SD1408) for caregivers

Of this group we used the data from 118 dyads for our analysis Additional

funding subsequently extended the study for a second year collecting data at 18 and

24 months post-stroke but necessitating participant re-enrollment

Race and ethnicity can be difficult to define as they are often categorizations

imposed on groups by social institutions Racial and ethnic definitions are meant to be

static categories used to classify groups but in reality are often fluid overlapping and

often flawed (Bradby 2003) For the purposes of this study we define our racial and

ethnic groups based on classifications denoted in stroke survivorsrsquo medical records and

by self-designation at the time of the interviews and surveys Whites are those who

identified as Caucasians of non-Hispanic origin African Americans are those who

identified as African American or black of non-Hispanic descent Puerto Ricans are

those of Hispanic descent who are African American black or white that also

identified as of Puerto Rican descent As indicated above some people identifying as

Puerto Rican lived on the US Mainland as well as living in San Juan Puerto Rico

We focus our analysis on the first-year post-stroke partly to capture the dynamics

of caregiving at the onset of post-acute stroke disability This study was approved by

the University of Florida Health Science Center Institutional Review Board (IRB)

and the VAMC Subcommittee for Clinical Investigations (SCI) Informed consent

was obtained prior to enrollment

Measures

Size of informal caregiving network

Primary caregivers were asked to identify if relevant one or two other caregivers

who provided help to them and the stroke survivor These caregivers were unpaid

Ethnicity amp Health 595

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friends or family members not compensated formal caregivers Thus the size of the

caregiving network ranges from one to three (or more) Networks larger than three

cannot be identified

Primary caregiver relationship

Ethnic variation in family and household structures affect the identity of the primary

caregiver relative to the stroke survivor and the living arrangements of the survivor

and caregiver For example lower levels of marriage among Puerto Ricans and

African Americans reduce the likelihood that the caregiver is a spouse (US Census

Bureau 2007a) Higher levels of fertility among Puerto Ricans and African

Americans increase the role that children play in caregiving (US Census Bureau

2007b) Finally extended family coresidential arrangements more common among

Puerto Ricans and African Americans are more likely to yield coresident caregivers

We identified four categories of relationship to the survivor spouse child friend or

lsquootherrsquo We further categorized whether the primary caregiver was coresident or not

Stability and change

We measured stability and change in the caregiver network at six and 12 months

post-discharge First we compared the size of the network to describe network

stability expansion or contraction Next we examined change in the dyad

differentiating change in characteristics of the stroke survivor from those of the

primary caregiver Survivor-based changes include his or her death change in

residence or change in health Change due to the caregiver includes his or her death

or inability to continue providing care and caregiver substitution

Results

We provide descriptive statistics for racialethnic differences in caregiver networks

with regard to characteristics size stability and change over time The character-

istics of the caregiving network at baseline are presented in Table 1 The data reveal

different care structures for Puerto Ricans living in Puerto Rico compared to whites

and African Americans Approximately three-fourths of the total sample report only

one caregiver Puerto Rican caregiver networks were significantly larger than that ofwhites and African Americans across time Nearly half of Puerto Ricans report

multiple caregivers On average 28 of Puerto Rican caregivers had at least one

helper compared to 13 of whites and 9 of African Americans Puerto Rican

caregiving networks also differ in their composition Puerto Ricans are more likely to

rely on children and are less likely to rely on lsquootherrsquo caregivers most of whom are

non-nuclear family members Puerto Ricans and African Americans are more likely

than whites to rely on coresident children Differences between Puerto Ricans and

African Americans suggest that the care network is not simply a lsquominorityrsquo or non-

white effect but signifies a more complex raceethnic cultural and demographic basis

(Aranda 2003 Lugo Steidel and Contreras 2003 Ramos 2004)

The next two tables show change in caregiving networks Change in the size of

networks is shown in Table 2 including change due to post-stroke mortality and

recovery toward independence Puerto Ricans begin recovery at home with larger

596 MS Hinojosa et al

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caregiving networks which contracts in approximately one-third of the sample over

the first year post-stroke (300) In contrast whites and African Americans begin

with smaller networks therefore they are less likely to contract Approximately 10

experience contraction in the size of the caregiving network Although they begin

with larger networks Puerto Ricans are also most likely to experience an expanding

caregiving network Nearly one-fifth of Puerto Rican networks add caregiver(s)

compared to whites (111) and African Americans (48)

Change in network size further depends on time Contraction in Puerto Rican

networks is somewhat more prevalent in the first six months post-stroke compared to

the last half of the year In contrast all of the contractions in African American

networks occur within six months of a stroke whereas contraction in white networks

is somewhat more prevalent 612 months post-stroke Among Puerto Rican

networks expansion is equally likely to occur in both six-month spells (128 and

125) Expansion in both white and African American networks is more likely in

the second half of the year following a stroke The Puerto Rican care network is

more likely to change size than either that of whites or African Americans

Change in the primary caregiverstrokesurvivor dyad is presented in Table 3

The final trio of columns shows the total amount of change in the care dyad

Approximately 90 of whites experience no change over the first year following a

stroke In striking contrast more than one-third of African Americans experience a

change in the care dyad Nearly one-quarter of the Puerto Ricans experience dyadic

change The first and second sets of columns reveal whether dyadic change is due to

change in the stroke survivor or the caregiver Changes in the Puerto Rican dyad are

Table 1 Characteristics () of informal care network at baseline stroke survivors among

veterans

Puerto Rican White African American Total

Number of caregivers (N49) (N43) (N26) (N118)

1 592 (29) 884 (38) 846 (22) 714 (89)

2 327 (16) 93 (4) 77 (2) 183 (22)

3 82 (4) 23 (1) 77 (2) 56 (7)

Caregiver relationship (N49) (N43) (N26) (N118)

Spouse 612 (30) 698 (30) 500 (13) 595 (73)

Child 184 (9) 23 (1) 115 (3) 103 (13)

Friend 102 (5) 93 (4) 77 (2) 87 (11)

Other 102 (5) 186 (8) 308 (8) 167 (21)

Coresident caregiver (N41) (N39) (N20) (N100)

Spouse 756 (31) 795 (31) 400 (8) 700 (70)

Child 122 (5) 00 (0) 150 (3) 80 (8)

Friend 73 (3) 51 (2) 50 (1) 60 (6)

Other 49 (2) 154 (6) 400 (8) 160 (16)

Non-resident caregiver (N8) (N4) (N6) (N18)

Spouse 00 (0) 00 (0) 00 (0) 00 (0)

Child 500 (4) 250 (1) 00 (0) 277 (5)

Friend 250 (2) 500 (2) 333 (2) 333 (6)

Other 250 (2) 255 (1) 667 (4) 389 (7)

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Table 2 Change in size of caregiver networka

Contracting network Expanding network

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

16 months 170 (8) 47 (2) 115 (3) 110 (13) 122 (6) 47 (2) 00 (0) 68 (8)

712 months 125 (6) 83 (4) 00 (0) 80 (10) 102 (5) 70 (3) 38 (1) 76 (9)

112 months 285 (14) 140 (6) 115 (3) 195 (23) 224 (11) 116 (5) 38 (1) 144 (17)

a and (N)

Table 3 Changea in stroke survivorcaregiver dyad

Survivor change Caregiver change Total change

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

16 months 60 (3) 00 (0) 130 (3) 43 (2) 50 (2) 00 (0) 103 (5) 50 (2) 136 (3)

712 months 119 (5) 25 (1) 136 (3) 00 (0) 29 (1) 136 (3) 119 (5) 54 (2) 273 (6)

112 months 179 (8) 25 (1) 266 (6) 43 (2) 79 (3) 138 (3) 222 (10) 104 (4) 402 (9)

No change 837 (41) 953 (41) 769 (20) 959 (47) 930 (40) 885 (23) 796 (39) 907 (39) 654 (17)

a and (N)

59

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less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

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Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

60

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associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

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This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

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This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

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Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

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UQ

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rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

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as weakness on the right side of their bodies 59 on the left side four reported bilateral

weakness and 11 reported that they had no body weakness No data were collected on

whether the care recipients had sustained prior strokes There was no exclusion of

participants based on comorbidities but their diagnosis was coded throughout the

study by reviewing patient records at each of the three time points

The stroke caregivers either identified themselves or were identified by persons

with stroke as the primary informal caregiver The dyads were selected from five

geographically and ethnically diverse Department of Veterans Affairs Medical

Centers (VAMCs) from 2003 to 2006 These VAMCs were located in South Georgia

Florida Puerto Rico and the US Virgin Islands and were selected specifically to gain

a better understanding of how individuals with stroke and their caregivers manage

the stroke recovery processThe sample was initially comprised of 135 (n270) stroke caregivercare

recipient dyads who were enrolled in the hospital At the one-month follow-up

visit 11 dyads withdrew reducing the final sample to 124 dyads (n248) Of the 124

caregivers 45 were whitenon-Hispanic 28 were African American two were Asian

American and 49 were Puerto Rican (eight residing in the USA and 41 residing in

Puerto Rico) Of the 124 care recipients 45 were whitenon-Hispanic 30 were

African American and 49 were Puerto Rican (eight residing in the USA and 41

residing in Puerto Rico) Of the stroke survivors 122 were men and two were

women and of the caregivers 16 were men and 108 were women The average age

was 6613 (SD1061) for stroke survivors and 590 (SD1408) for caregivers

Of this group we used the data from 118 dyads for our analysis Additional

funding subsequently extended the study for a second year collecting data at 18 and

24 months post-stroke but necessitating participant re-enrollment

Race and ethnicity can be difficult to define as they are often categorizations

imposed on groups by social institutions Racial and ethnic definitions are meant to be

static categories used to classify groups but in reality are often fluid overlapping and

often flawed (Bradby 2003) For the purposes of this study we define our racial and

ethnic groups based on classifications denoted in stroke survivorsrsquo medical records and

by self-designation at the time of the interviews and surveys Whites are those who

identified as Caucasians of non-Hispanic origin African Americans are those who

identified as African American or black of non-Hispanic descent Puerto Ricans are

those of Hispanic descent who are African American black or white that also

identified as of Puerto Rican descent As indicated above some people identifying as

Puerto Rican lived on the US Mainland as well as living in San Juan Puerto Rico

We focus our analysis on the first-year post-stroke partly to capture the dynamics

of caregiving at the onset of post-acute stroke disability This study was approved by

the University of Florida Health Science Center Institutional Review Board (IRB)

and the VAMC Subcommittee for Clinical Investigations (SCI) Informed consent

was obtained prior to enrollment

Measures

Size of informal caregiving network

Primary caregivers were asked to identify if relevant one or two other caregivers

who provided help to them and the stroke survivor These caregivers were unpaid

Ethnicity amp Health 595

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friends or family members not compensated formal caregivers Thus the size of the

caregiving network ranges from one to three (or more) Networks larger than three

cannot be identified

Primary caregiver relationship

Ethnic variation in family and household structures affect the identity of the primary

caregiver relative to the stroke survivor and the living arrangements of the survivor

and caregiver For example lower levels of marriage among Puerto Ricans and

African Americans reduce the likelihood that the caregiver is a spouse (US Census

Bureau 2007a) Higher levels of fertility among Puerto Ricans and African

Americans increase the role that children play in caregiving (US Census Bureau

2007b) Finally extended family coresidential arrangements more common among

Puerto Ricans and African Americans are more likely to yield coresident caregivers

We identified four categories of relationship to the survivor spouse child friend or

lsquootherrsquo We further categorized whether the primary caregiver was coresident or not

Stability and change

We measured stability and change in the caregiver network at six and 12 months

post-discharge First we compared the size of the network to describe network

stability expansion or contraction Next we examined change in the dyad

differentiating change in characteristics of the stroke survivor from those of the

primary caregiver Survivor-based changes include his or her death change in

residence or change in health Change due to the caregiver includes his or her death

or inability to continue providing care and caregiver substitution

Results

We provide descriptive statistics for racialethnic differences in caregiver networks

with regard to characteristics size stability and change over time The character-

istics of the caregiving network at baseline are presented in Table 1 The data reveal

different care structures for Puerto Ricans living in Puerto Rico compared to whites

and African Americans Approximately three-fourths of the total sample report only

one caregiver Puerto Rican caregiver networks were significantly larger than that ofwhites and African Americans across time Nearly half of Puerto Ricans report

multiple caregivers On average 28 of Puerto Rican caregivers had at least one

helper compared to 13 of whites and 9 of African Americans Puerto Rican

caregiving networks also differ in their composition Puerto Ricans are more likely to

rely on children and are less likely to rely on lsquootherrsquo caregivers most of whom are

non-nuclear family members Puerto Ricans and African Americans are more likely

than whites to rely on coresident children Differences between Puerto Ricans and

African Americans suggest that the care network is not simply a lsquominorityrsquo or non-

white effect but signifies a more complex raceethnic cultural and demographic basis

(Aranda 2003 Lugo Steidel and Contreras 2003 Ramos 2004)

The next two tables show change in caregiving networks Change in the size of

networks is shown in Table 2 including change due to post-stroke mortality and

recovery toward independence Puerto Ricans begin recovery at home with larger

596 MS Hinojosa et al

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caregiving networks which contracts in approximately one-third of the sample over

the first year post-stroke (300) In contrast whites and African Americans begin

with smaller networks therefore they are less likely to contract Approximately 10

experience contraction in the size of the caregiving network Although they begin

with larger networks Puerto Ricans are also most likely to experience an expanding

caregiving network Nearly one-fifth of Puerto Rican networks add caregiver(s)

compared to whites (111) and African Americans (48)

Change in network size further depends on time Contraction in Puerto Rican

networks is somewhat more prevalent in the first six months post-stroke compared to

the last half of the year In contrast all of the contractions in African American

networks occur within six months of a stroke whereas contraction in white networks

is somewhat more prevalent 612 months post-stroke Among Puerto Rican

networks expansion is equally likely to occur in both six-month spells (128 and

125) Expansion in both white and African American networks is more likely in

the second half of the year following a stroke The Puerto Rican care network is

more likely to change size than either that of whites or African Americans

Change in the primary caregiverstrokesurvivor dyad is presented in Table 3

The final trio of columns shows the total amount of change in the care dyad

Approximately 90 of whites experience no change over the first year following a

stroke In striking contrast more than one-third of African Americans experience a

change in the care dyad Nearly one-quarter of the Puerto Ricans experience dyadic

change The first and second sets of columns reveal whether dyadic change is due to

change in the stroke survivor or the caregiver Changes in the Puerto Rican dyad are

Table 1 Characteristics () of informal care network at baseline stroke survivors among

veterans

Puerto Rican White African American Total

Number of caregivers (N49) (N43) (N26) (N118)

1 592 (29) 884 (38) 846 (22) 714 (89)

2 327 (16) 93 (4) 77 (2) 183 (22)

3 82 (4) 23 (1) 77 (2) 56 (7)

Caregiver relationship (N49) (N43) (N26) (N118)

Spouse 612 (30) 698 (30) 500 (13) 595 (73)

Child 184 (9) 23 (1) 115 (3) 103 (13)

Friend 102 (5) 93 (4) 77 (2) 87 (11)

Other 102 (5) 186 (8) 308 (8) 167 (21)

Coresident caregiver (N41) (N39) (N20) (N100)

Spouse 756 (31) 795 (31) 400 (8) 700 (70)

Child 122 (5) 00 (0) 150 (3) 80 (8)

Friend 73 (3) 51 (2) 50 (1) 60 (6)

Other 49 (2) 154 (6) 400 (8) 160 (16)

Non-resident caregiver (N8) (N4) (N6) (N18)

Spouse 00 (0) 00 (0) 00 (0) 00 (0)

Child 500 (4) 250 (1) 00 (0) 277 (5)

Friend 250 (2) 500 (2) 333 (2) 333 (6)

Other 250 (2) 255 (1) 667 (4) 389 (7)

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Table 2 Change in size of caregiver networka

Contracting network Expanding network

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

16 months 170 (8) 47 (2) 115 (3) 110 (13) 122 (6) 47 (2) 00 (0) 68 (8)

712 months 125 (6) 83 (4) 00 (0) 80 (10) 102 (5) 70 (3) 38 (1) 76 (9)

112 months 285 (14) 140 (6) 115 (3) 195 (23) 224 (11) 116 (5) 38 (1) 144 (17)

a and (N)

Table 3 Changea in stroke survivorcaregiver dyad

Survivor change Caregiver change Total change

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

16 months 60 (3) 00 (0) 130 (3) 43 (2) 50 (2) 00 (0) 103 (5) 50 (2) 136 (3)

712 months 119 (5) 25 (1) 136 (3) 00 (0) 29 (1) 136 (3) 119 (5) 54 (2) 273 (6)

112 months 179 (8) 25 (1) 266 (6) 43 (2) 79 (3) 138 (3) 222 (10) 104 (4) 402 (9)

No change 837 (41) 953 (41) 769 (20) 959 (47) 930 (40) 885 (23) 796 (39) 907 (39) 654 (17)

a and (N)

59

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less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

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Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

60

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associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

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This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

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rary

] at

09

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This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

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AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

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ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

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ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

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2014

friends or family members not compensated formal caregivers Thus the size of the

caregiving network ranges from one to three (or more) Networks larger than three

cannot be identified

Primary caregiver relationship

Ethnic variation in family and household structures affect the identity of the primary

caregiver relative to the stroke survivor and the living arrangements of the survivor

and caregiver For example lower levels of marriage among Puerto Ricans and

African Americans reduce the likelihood that the caregiver is a spouse (US Census

Bureau 2007a) Higher levels of fertility among Puerto Ricans and African

Americans increase the role that children play in caregiving (US Census Bureau

2007b) Finally extended family coresidential arrangements more common among

Puerto Ricans and African Americans are more likely to yield coresident caregivers

We identified four categories of relationship to the survivor spouse child friend or

lsquootherrsquo We further categorized whether the primary caregiver was coresident or not

Stability and change

We measured stability and change in the caregiver network at six and 12 months

post-discharge First we compared the size of the network to describe network

stability expansion or contraction Next we examined change in the dyad

differentiating change in characteristics of the stroke survivor from those of the

primary caregiver Survivor-based changes include his or her death change in

residence or change in health Change due to the caregiver includes his or her death

or inability to continue providing care and caregiver substitution

Results

We provide descriptive statistics for racialethnic differences in caregiver networks

with regard to characteristics size stability and change over time The character-

istics of the caregiving network at baseline are presented in Table 1 The data reveal

different care structures for Puerto Ricans living in Puerto Rico compared to whites

and African Americans Approximately three-fourths of the total sample report only

one caregiver Puerto Rican caregiver networks were significantly larger than that ofwhites and African Americans across time Nearly half of Puerto Ricans report

multiple caregivers On average 28 of Puerto Rican caregivers had at least one

helper compared to 13 of whites and 9 of African Americans Puerto Rican

caregiving networks also differ in their composition Puerto Ricans are more likely to

rely on children and are less likely to rely on lsquootherrsquo caregivers most of whom are

non-nuclear family members Puerto Ricans and African Americans are more likely

than whites to rely on coresident children Differences between Puerto Ricans and

African Americans suggest that the care network is not simply a lsquominorityrsquo or non-

white effect but signifies a more complex raceethnic cultural and demographic basis

(Aranda 2003 Lugo Steidel and Contreras 2003 Ramos 2004)

The next two tables show change in caregiving networks Change in the size of

networks is shown in Table 2 including change due to post-stroke mortality and

recovery toward independence Puerto Ricans begin recovery at home with larger

596 MS Hinojosa et al

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caregiving networks which contracts in approximately one-third of the sample over

the first year post-stroke (300) In contrast whites and African Americans begin

with smaller networks therefore they are less likely to contract Approximately 10

experience contraction in the size of the caregiving network Although they begin

with larger networks Puerto Ricans are also most likely to experience an expanding

caregiving network Nearly one-fifth of Puerto Rican networks add caregiver(s)

compared to whites (111) and African Americans (48)

Change in network size further depends on time Contraction in Puerto Rican

networks is somewhat more prevalent in the first six months post-stroke compared to

the last half of the year In contrast all of the contractions in African American

networks occur within six months of a stroke whereas contraction in white networks

is somewhat more prevalent 612 months post-stroke Among Puerto Rican

networks expansion is equally likely to occur in both six-month spells (128 and

125) Expansion in both white and African American networks is more likely in

the second half of the year following a stroke The Puerto Rican care network is

more likely to change size than either that of whites or African Americans

Change in the primary caregiverstrokesurvivor dyad is presented in Table 3

The final trio of columns shows the total amount of change in the care dyad

Approximately 90 of whites experience no change over the first year following a

stroke In striking contrast more than one-third of African Americans experience a

change in the care dyad Nearly one-quarter of the Puerto Ricans experience dyadic

change The first and second sets of columns reveal whether dyadic change is due to

change in the stroke survivor or the caregiver Changes in the Puerto Rican dyad are

Table 1 Characteristics () of informal care network at baseline stroke survivors among

veterans

Puerto Rican White African American Total

Number of caregivers (N49) (N43) (N26) (N118)

1 592 (29) 884 (38) 846 (22) 714 (89)

2 327 (16) 93 (4) 77 (2) 183 (22)

3 82 (4) 23 (1) 77 (2) 56 (7)

Caregiver relationship (N49) (N43) (N26) (N118)

Spouse 612 (30) 698 (30) 500 (13) 595 (73)

Child 184 (9) 23 (1) 115 (3) 103 (13)

Friend 102 (5) 93 (4) 77 (2) 87 (11)

Other 102 (5) 186 (8) 308 (8) 167 (21)

Coresident caregiver (N41) (N39) (N20) (N100)

Spouse 756 (31) 795 (31) 400 (8) 700 (70)

Child 122 (5) 00 (0) 150 (3) 80 (8)

Friend 73 (3) 51 (2) 50 (1) 60 (6)

Other 49 (2) 154 (6) 400 (8) 160 (16)

Non-resident caregiver (N8) (N4) (N6) (N18)

Spouse 00 (0) 00 (0) 00 (0) 00 (0)

Child 500 (4) 250 (1) 00 (0) 277 (5)

Friend 250 (2) 500 (2) 333 (2) 333 (6)

Other 250 (2) 255 (1) 667 (4) 389 (7)

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Table 2 Change in size of caregiver networka

Contracting network Expanding network

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

16 months 170 (8) 47 (2) 115 (3) 110 (13) 122 (6) 47 (2) 00 (0) 68 (8)

712 months 125 (6) 83 (4) 00 (0) 80 (10) 102 (5) 70 (3) 38 (1) 76 (9)

112 months 285 (14) 140 (6) 115 (3) 195 (23) 224 (11) 116 (5) 38 (1) 144 (17)

a and (N)

Table 3 Changea in stroke survivorcaregiver dyad

Survivor change Caregiver change Total change

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

16 months 60 (3) 00 (0) 130 (3) 43 (2) 50 (2) 00 (0) 103 (5) 50 (2) 136 (3)

712 months 119 (5) 25 (1) 136 (3) 00 (0) 29 (1) 136 (3) 119 (5) 54 (2) 273 (6)

112 months 179 (8) 25 (1) 266 (6) 43 (2) 79 (3) 138 (3) 222 (10) 104 (4) 402 (9)

No change 837 (41) 953 (41) 769 (20) 959 (47) 930 (40) 885 (23) 796 (39) 907 (39) 654 (17)

a and (N)

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less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

Ethnicity amp Health 599

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Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

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associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

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This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

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This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

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AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

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UQ

Lib

rary

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42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

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ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

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caregiving networks which contracts in approximately one-third of the sample over

the first year post-stroke (300) In contrast whites and African Americans begin

with smaller networks therefore they are less likely to contract Approximately 10

experience contraction in the size of the caregiving network Although they begin

with larger networks Puerto Ricans are also most likely to experience an expanding

caregiving network Nearly one-fifth of Puerto Rican networks add caregiver(s)

compared to whites (111) and African Americans (48)

Change in network size further depends on time Contraction in Puerto Rican

networks is somewhat more prevalent in the first six months post-stroke compared to

the last half of the year In contrast all of the contractions in African American

networks occur within six months of a stroke whereas contraction in white networks

is somewhat more prevalent 612 months post-stroke Among Puerto Rican

networks expansion is equally likely to occur in both six-month spells (128 and

125) Expansion in both white and African American networks is more likely in

the second half of the year following a stroke The Puerto Rican care network is

more likely to change size than either that of whites or African Americans

Change in the primary caregiverstrokesurvivor dyad is presented in Table 3

The final trio of columns shows the total amount of change in the care dyad

Approximately 90 of whites experience no change over the first year following a

stroke In striking contrast more than one-third of African Americans experience a

change in the care dyad Nearly one-quarter of the Puerto Ricans experience dyadic

change The first and second sets of columns reveal whether dyadic change is due to

change in the stroke survivor or the caregiver Changes in the Puerto Rican dyad are

Table 1 Characteristics () of informal care network at baseline stroke survivors among

veterans

Puerto Rican White African American Total

Number of caregivers (N49) (N43) (N26) (N118)

1 592 (29) 884 (38) 846 (22) 714 (89)

2 327 (16) 93 (4) 77 (2) 183 (22)

3 82 (4) 23 (1) 77 (2) 56 (7)

Caregiver relationship (N49) (N43) (N26) (N118)

Spouse 612 (30) 698 (30) 500 (13) 595 (73)

Child 184 (9) 23 (1) 115 (3) 103 (13)

Friend 102 (5) 93 (4) 77 (2) 87 (11)

Other 102 (5) 186 (8) 308 (8) 167 (21)

Coresident caregiver (N41) (N39) (N20) (N100)

Spouse 756 (31) 795 (31) 400 (8) 700 (70)

Child 122 (5) 00 (0) 150 (3) 80 (8)

Friend 73 (3) 51 (2) 50 (1) 60 (6)

Other 49 (2) 154 (6) 400 (8) 160 (16)

Non-resident caregiver (N8) (N4) (N6) (N18)

Spouse 00 (0) 00 (0) 00 (0) 00 (0)

Child 500 (4) 250 (1) 00 (0) 277 (5)

Friend 250 (2) 500 (2) 333 (2) 333 (6)

Other 250 (2) 255 (1) 667 (4) 389 (7)

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Table 2 Change in size of caregiver networka

Contracting network Expanding network

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

16 months 170 (8) 47 (2) 115 (3) 110 (13) 122 (6) 47 (2) 00 (0) 68 (8)

712 months 125 (6) 83 (4) 00 (0) 80 (10) 102 (5) 70 (3) 38 (1) 76 (9)

112 months 285 (14) 140 (6) 115 (3) 195 (23) 224 (11) 116 (5) 38 (1) 144 (17)

a and (N)

Table 3 Changea in stroke survivorcaregiver dyad

Survivor change Caregiver change Total change

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

16 months 60 (3) 00 (0) 130 (3) 43 (2) 50 (2) 00 (0) 103 (5) 50 (2) 136 (3)

712 months 119 (5) 25 (1) 136 (3) 00 (0) 29 (1) 136 (3) 119 (5) 54 (2) 273 (6)

112 months 179 (8) 25 (1) 266 (6) 43 (2) 79 (3) 138 (3) 222 (10) 104 (4) 402 (9)

No change 837 (41) 953 (41) 769 (20) 959 (47) 930 (40) 885 (23) 796 (39) 907 (39) 654 (17)

a and (N)

59

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2014

less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

Ethnicity amp Health 599

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

60

0M

S

Hin

ojo

saet

al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Table 2 Change in size of caregiver networka

Contracting network Expanding network

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Total

(N118)

16 months 170 (8) 47 (2) 115 (3) 110 (13) 122 (6) 47 (2) 00 (0) 68 (8)

712 months 125 (6) 83 (4) 00 (0) 80 (10) 102 (5) 70 (3) 38 (1) 76 (9)

112 months 285 (14) 140 (6) 115 (3) 195 (23) 224 (11) 116 (5) 38 (1) 144 (17)

a and (N)

Table 3 Changea in stroke survivorcaregiver dyad

Survivor change Caregiver change Total change

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

Puerto Rican

(N49)

White

(N43)

African American

(N26)

16 months 60 (3) 00 (0) 130 (3) 43 (2) 50 (2) 00 (0) 103 (5) 50 (2) 136 (3)

712 months 119 (5) 25 (1) 136 (3) 00 (0) 29 (1) 136 (3) 119 (5) 54 (2) 273 (6)

112 months 179 (8) 25 (1) 266 (6) 43 (2) 79 (3) 138 (3) 222 (10) 104 (4) 402 (9)

No change 837 (41) 953 (41) 769 (20) 959 (47) 930 (40) 885 (23) 796 (39) 907 (39) 654 (17)

a and (N)

59

8M

S

Hin

ojo

saet

al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

Ethnicity amp Health 599

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

60

0M

S

Hin

ojo

saet

al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

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] at

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ber

2014

less likely due to change in the caregiver (43) but occur more often due to change

in the stroke survivor (179) Although change in the white dyad is rare it is more

likely a function of change in the primary caregiver (79) than the stroke survivor

(25) Among African American dyads change in the primary caregiver is an

appreciable source of change (136) More than one-quarter of all African

American dyads experience change in the stroke survivorChange in dyads further varies across the year following a stroke Twice as many

changes in Puerto Rican stroke survivors occur in the last six months than in the first

six months Change in African American survivors occurs equally across both six-

month spells whereas change in white survivors is limited to the later time period

Change in Puerto Rican and white caregivers occurs early in the first year whereas

change in African American caregivers is concentrated in the later months

The final table portrays types of change in survivorcaregiver dyads The

majority of changes in the Puerto Rican dyads are due to death or health declines of

the stroke survivor Compared to whites and African Americans Puerto Rican

stroke survivors are more likely to die during the first year after the disabling event

Other analyses of the same data also suggest greater disability among Puerto Rican

veterans (Hinojosa et al 2009) Changes evoked by the Puerto Rican caregiver occur

during the first six months reflecting substitutions in primary caregivers In contrast

change in dyad is least likely among whites and primarily reflects substitution of

caregivers Among African Americans change in the dyad is more likely than among

Puerto Ricans or whites and occurs most frequently in the second half of the first

year Change during the first six months occurs because of health declines of thestroke survivor Change in the last six months occurs for several reasons most often

because the stroke survivor changes residence or the primary caregiver dies or is no

longer able to provide care If change in residence is prompted by loss of care by the

primary caregiver then the effect of caregiver loss among African Americans would

be larger (Table 4)

Conclusion

Our study highlighted the differing nature of caregiver networks by race ethnicity

and place Puerto Ricans have different care structures than non-Latino whites or

African Americans They tend to be larger reflecting the use of multiple caregivers

There also is a greater reliance on coresident and non-resident children Caregivers

of Puerto Rican stroke survivors are more likely to be coresident householdmembers The Puerto Rican care network is more likely to change in size through

both contraction and expansion Perhaps this reflects a rotating network likely

occurring as one child substitutes for another Coresidential substitution may occur

because more children live outside the island prohibiting daily care visits and

prompting sequential extended care visits (Zsembik and Bonilla 2000) Finally there

is an appreciable amount of change in the survivorcaregiver relationship primarily

due to the higher levels of mortality and health declines among Puerto Rican stroke

survivors

The data add to the mounting evidence on the dynamic nature of caregiving

Previous research examined caregiving dynamics across relatively long spells (eg

one or two years) which capture the slower changes in care demand associated with

growing frailty with aging and declines in physical and cognitive functioning

Ethnicity amp Health 599

Dow

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ded

by [

UQ

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rary

] at

09

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ovem

ber

2014

Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

60

0M

S

Hin

ojo

saet

al

Dow

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ded

by [

UQ

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rary

] at

09

42 0

5 N

ovem

ber

2014

associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

Dow

nloa

ded

by [

UQ

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rary

] at

09

42 0

5 N

ovem

ber

2014

This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Table 4 Type of changea in stroke survivorcaregiver dyad

16 months 712 months

Puerto Rican

(N49) White (N43)

African American

(N26)

Puerto Rican

(N49) White (N43)

African American

(N26)

Survivor change

Death 43 (2) 00 (0) 00 (0) 71 (3) 00 (0) 00 (0)

Ill 22 (1) 00 (0) 130 (3) 48 (2) 29 (1) 45 (1)

Changed residence 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Total 65 (3) 00 (0) 130 (3) 119 (5) 25 (1) 136 (3)

Caregiver change

Loss 00 (0) 00 (0) 00 (0) 00 (0) 00 (0) 90 (2)

Substitution 43 (2) 50 (2) 00 (0) 00 (0) 00 (0) 45 (1)

Total 43 (2) 50 (2) 00 (0) 00 (0) 29 (1) 136 (3)

Total change 105 (5) 50 (2) 130 (3) 119 (5) 54 (2) 272 (6)

a and (N)

60

0M

S

Hin

ojo

saet

al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

associated with progression of chronic disease This time scale of observation

however is insufficient to capture change in health and caregiving that occur in

shorter spells such as post-stroke Our data indicate that death or significant

deterioration in health and caregiving in response occurs with relative frequency in

the first year following a stroke which are patterns best described in a series of short-

term spells of six months

These analyses of short-term care dynamics may have relevance for other chronic

health conditions especially those with rapid change in recovery or health decline or

more unstable health trajectories Analyses of short-term health and caregiving

change can also be extended to end-of-life care in the year preceding death an event

that follows the relatively slow decline in functioning associated with chronic disease

Furthermore dynamic short-term care models may help describe acute episodes

occurring in long-term care management (eg spells of time when hypertension or

blood glucose levels are not under control) In each of these scenarios caregiving is

likely to be of short but intensive durations and how the caregiving network

responds may be quite different than in long-term care scenarios (Szinovacz and

Davey 2007)

Whether the informal care received has a positive effect on the survivorsrsquo health

as has been observed among Mexican-origin stroke survivors is unknown in this

analysis The next research task in this area is to analyze stroke sequelae and

duration to evaluate whether the higher levels of mortality and health declines could

be lessened Assuming that informal family care at the very least does not

abbreviate survivorship or reduce health and then the practical implications are to

assess the adequacy of formal care and to construct interventions in support of

caregiver health and needs If the level of informal care is primarily responsive to a

higher care demand then the focus turns to how informal and formal care

collectively provide necessary personal care First we should seek to identify how

personal care assistance is distributed across care sectors and examine whether

informal care intensifies to cover care gaps created by low levels of formal care

Second we should investigate whether the entire distribution of personal care

sufficiently meets the care demands of the stroke survivor and family The ability to

determine unmet care needs is useful to evaluate quality of care the level and speed

of rehabilitation and the balance of formal and informal care necessary to contain

costs but reduce informal caregiver lsquoburnoutrsquoAnother practical implication arising from these results is to ensure cultural

awareness among health professionals of a multiple caregiver child rotation pattern

in informal family care Awareness may enhance discharge planning and education

as well as improve arrangement of formal care services that are commensurate with

care demand and follow the natural history of stroke recovery For example

recognition that adult children may take turns providing care in the household would

call attention to how household economic need is measured and used to determine

eligibility for formal care services

Finally these data provide evidence in support of a Puerto RicanLatino cultural

basis for family care of disabled adults The care structure is collectivist-oriented and

remarkably dynamic changing its size composition and primary caregiver Clearly

research that focuses on a single or primary caregiver using cross-sectional data will

misidentify ethnic cultural differences in caregiving

Ethnicity amp Health 601

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This research takes our general understanding of the cultural context of

caregiving in two directions First our findings are consistent with studies that

show more collectivist and complex care structures among Latinos and across Latin

America although there are clear differences among countries across social classes

between women and men and across immigrant generations (Sotomayor 1992 Vega

1995 Delgado and Tennstedt 1997ab Wilmoth 2001 Beyene et al 2002 Pelaez and

Martinez 2002 Aranda 2003 Pelaez 2005 Parra-Cardona et al 2008) There is

substantial empirical evidence that these similar care structures and networks are

rooted in common cultural values of familism respect for older adults and social

and moral obligations to support and care for family members especially older and

ill parents (Cox and Monk 1993 Cortes 1995 Clark and Huttlinger 1998 Montoro

Rodriguez and Kosloski 1998 Lugo Steidel and Contreras 2003 Ramos 2004 Neary

and Mahoney 2005 Borrayo et al 2007 Kao et al 2007 Parra-Cardona et al 2008

Wells et al 2008) Although Puerto Ricans are US citizens Puerto Rican culture and

geographic mobility mirror that of Latino immigrants to the USA Yet because they

are citizens and with comparable disadvantage as African Americans analyses of

Puerto Rican caregiving contributes to our understanding of how socioeconomic

disadvantage and minority culture affect health and caregiving opportunities and

outcomes

The dynamics of post-stroke disability and family caregiving in Spanish-speaking

Caribbean countries may be similar to the Puerto Rican experience another area

within which this analysis might have relevance Our Puerto Rican respondents are

resident on the island where Latino culture is the dominant culture the formal

health care providers are of the same culture and alternative care arrangements (ie

long-term care institutions) may be in short supply (Zsembik and Bonilla 2000

Aranda 2003) As important families from Caribbean populations are often

geographically dispersed as adult children migrate usually to the USA in search

of better economic opportunity which appears to reduce the availability of informal

family care for disabled family members (Palloni et al 2002 Pelaez 2005) If

geographic proximity is necessary adult children may be less able to accomplish the

traditional cultural contract that provides broad and intensive family care structures

Inability to meet cultural expectations of providing care to family members generates

socioemotional stress among some Puerto Ricans (Aranda 2003 Ramos 2004) In an

alternative strategy disabled family members may be brought to the USA for spells

of formal or informal care a health or medical care migratory stream The health

and care implications of the circulation of Puerto Ricans between the mainland and

the island are beginning to draw the attention of health researchers and health care

practitioners (Plant and Keating 1997)

A final response available to transnational Caribbean communities is to

construct a more dynamic and complex care network and task assignment The

disabled may be cared for in her or his home by rotating family members who

coreside for several months at a time Also a disabled family member may live for

several months in one household then be transferred across households in the USA

and the country of origin thereby updating yet maintaining cultural caregiving

traditions As culturally based ethnic caregiving structures become more complex

and dynamic researchers and practitioners must adapt to new arrangements of

LatinoLatin American cultural traditions

602 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

This study has several limitations that center on the study population First men

comprise our Veterans Administration (VA) population of stroke survivors and only

two women participated in the study Participants were mostly World War II and

Korean War veterans experiencing chronic conditions that are typical of olderpopulations Women did not begin joining the military in any significant numbers

until the 1970s We expect to see women with these types of health conditions in

veteran populations in the future Second the majority of caregivers in our sample

are spouses and female children or other family members of these male stroke

survivors Thus the relationship between caregiver characteristics and stroke

survivors may not hold true for male spouses of female stroke survivors The

patterns may differ in ways that are related to traditional gender roles and caretaking

activities partners take on in marital relationships A third limitation is the relativelysmall size of our sample and our inability to statistically compare differences between

groups

Note

1 We refer to a specific ethnic group (eg Puerto Rican and Mexican American) when theyare the sample population in the cited research study We use the term Latino when thestudy population includes two or more Latino ethnic groups or when we refer to apresumably shared Latino experience

References

AHA 2005 Heart disease and stroke statistics 2005 update Dallas TX American HeartAssociation

AHCPR 1995 Clinical practice guideline post-stroke rehabilitation Washington DC USDepartment of Health and Human Services

Anderson C Linto J and Stewart-Wynne EG 1995 A population-based assessment ofthe impact and burden of caregiving for long-term stroke survivors Stroke 26 843849

Aranda EM 2003 Global care work and gendered constraints the case of Puerto Ricantransmigrants Gender amp Society 17 (4) 609626

Ayala C et al 2001 Racialethnic disparities in mortality by stroke subtype in the UnitedStates 19951998 American Journal of Epidemiology 154 (11) 10571063

Beyene Y Becker G and Mayen N 2002 Perception of aging and sense of well-beingamong Latino elderly Journal of Cross-Cultural Gerontology 17 155172

Bian J et al 2003 Racial differences in survival post cerebral infarction among the elderlyNeurology 60 (2) 285290

Borrayo EA et al 2007 An inquiry into Latino caregiversrsquo experience caring for olderadults with Alzheimerrsquos disease and related dementias Journal of Applied Gerontology 26(5) 486505

Bradby H 2003 Describing ethnicity in health research Ethnicity and Health 8 (1) 513Bruno A 1998 Are there differences in vascular disease between ethnic and racial groups

Stroke 29 23Bruno A et al 1996 Incidence of spontaneous intracerebral hemorrhage among Hispanics

and non-Hispanic whites in New Mexico Neurology 47 405408Casper ML et al 1997 Social class and race disparities in premature stroke mortality

among men in North Carolina Annals of Epidemiology 7 (2) 146153Chiou-Tan FY et al 2006 Racialethnic differences in FIM scores and length of stay for

underinsured patients undergoing stroke inpatient rehabilitation American Journal ofPhysical Medicine and Rehabilitation 85 (5) 415423

Clark M and Huttlinger K 1998 Elder care among Mexican American families ClinicalNursing Research 7 6481

Ethnicity amp Health 603

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

Ethnicity amp Health 605

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Cortes DE 1995 Variations in familism in two generations of Puerto Ricans HispanicJournal of Behavioral Sciences 17 249255

Cox C 1993 Service needs and interests a comparison of African American and whitecaregivers seeking Alzheimerrsquos assistance American Journal of Alzheimerrsquos Care and RelatedDisorders amp Research 8 (3) 3340

Cox C and Monk A 1993 Hispanic culture and family care of Alzheimerrsquos patients Healthand Social Work 18 92100

Delgado M and Tennstedt SL 1997a Making the case for culturally appropriatecommunity services Puerto Rican elders and their caregivers Health and Social Work22 246255

Delgado M and Tennstedt SL 1997b Puerto Rican sons as primary caregivers of elderlyparents Social Work 42 125134

Dilworth-Anderson P Williams IC and Gibson BE 2002 Issues of race ethnicity andculture in caregiving research a 20-year review (19802000) The Gerontologist 42 (2)237272

Dilworth-Anderson P Williams S and Cooper T 1999 Family caregiving to elderlyAfrican Americans caregiver types and structures Journals of Gerontology Social Sciences54B s237s241

Eschbach K et al 2004 Neighborhood context and mortality among older MexicanAmericans is there a barrio advantage American Journal of Public Health 94 (10)18071812

Folstein MF Folstein SE and McHugh PR 1975 Mini-mental state A practical methodfor grading the cognitive state of patients for the clinician Journal of Psychiatric Research12 189198

Frey JL Jahnke HK and Bulfinch EW 1998 Differences in stroke between whiteHispanic and Native American patients the barrow neurological institute stroke databaseStroke 29 2933

Gillium RF 1995 Epidemiology of stroke in Hispanic Americans Stroke 26 17071712Han B and Haley WE 1999 Family caregiving for patients with stroke Review and

analysis Stroke 30 (7) 14781485Hartmann A et al 2001 Mortality and causes of death after first ischemic stroke the

Northern Manhattan stroke study Neurology 57 (11) 20002005Hinojosa MS et al 2009 RacialEthnic variation in recovery from stroke the role of

caregivers Journal of Rehabilitation Research and Development 42 (2) 233242Horner RD et al 1991 Racial variations in ischemic stroke-related physical and functional

impairments Stroke 22 (12) 14971501Horner RD et al 2003 Effects of race and poverty on the process and outcome of inpatient

rehabilitation services among stroke patients Stroke 34 10271031Jette AM Tennstedt SL and Branch LG 1992 Stability of informal long-term care

Journal of Aging and Health 4 193211Kao HS McHugh ML and Travis SS 2007 Psychometric tests of expectations of filial

piety scale in a Mexican-American population Journal of Clinical Nursing 16 14601467Kissela B et al 2004 Stroke in biracial populations the excess burden of stroke among

Blacks Stroke 35 426431Lawton MP 1992 The dynamics of caregiving for a demented elder among black and white

families Journals of Gerontology Social Sciences 47 s156s164Lisabeth LD 2006 Stroke burden in Mexican Americans the impact of mortality following

stroke Annals of Epidemiology 16 (1) 3340Lugo Steidel AG and Contreras JM 2003 A new familism scale for use with Latino

populations Hispanic Journal of Behavioral Sciences 25 (3) 312330Marın G and Marın BV 1991 Research with Hispanic populations Newbury Park CA

SageMcGruder Henraya F et al 2004 Racial and ethnic disparities in cardiovascular risk factors

among stroke survivors United States 1999 to 2001 Stroke 35 15571561Montoro Rodriguez J and Kosloski K 1998 The impact of acculturation on attitudinal

familism in a community of Puerto Rican Americans Hispanic Journal of BehavioralSciences 20 375390

604 MS Hinojosa et al

Dow

nloa

ded

by [

UQ

Lib

rary

] at

09

42 0

5 N

ovem

ber

2014

Munterner P et al 2002 Trends in stroke prevalence between 1973 and 1991 in the USpopulation 25 to 74 years of age Stroke 33 12091213

National Heart Lung and Blood Institute 2004 Mortality and morbidity 2004 Chartbook oncardiovascular lung and blood diseases Washington DC NIH Available from httpwwwnhlbinihgovresourcesdocs04_chtbkpdf [Accessed June 2007]

Neary SR and Mahoney DF 2005 Dementia caregiving the experiences of HispanicLatino caregivers Journal of Transcultural Nursing 26 (2) 163170

Ottenbacher KJ et al 2001 Characteristics of persons rehospitalized after strokerehabilitation Archives of Physical Medicine and Rehabilitation 82 (10) 13671374

Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

Parra-Cardona JR et al 2008 Shared ancestry evolving stories similar and contrasting lifeexperiences described by foreign born and US born Latino parents Family Process 47 (2)157172

Pelaez M 2005 La construccion de Las Bases de La Buena Salud en La Vejez situacion enLas Americas Revista Panamericana de Salud Publica 17 (56) 299302

Pelaez M and Martinez I 2002 Equity and systems of intergenerational transfers in LatinAmerica and the Caribbean Pan American Journal of Public Health 11 (56) 439443

Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

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Palloni A Pinto-Aguirre G and Pelaez M 2002 Demographic and health conditions ofageing in Latin America and the Caribbean International Journal of Epidemiology 31 762771

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Petty GW et al 2000 Ischemic stroke subtypes a population-based study of functionaloutcome survival and recurrence Stroke 31 10621068

Plant J and Keating HJ 1997 Puerto Rican patients travel to Puerto Rico assessing theeffect on clinical care Connecticut Medicine 61 (11) 713716

Ramos BM 2004 Culture ethnicity and caregiver stress among Puerto Ricans Journal ofApplied Gerontology 23 (4) 469486

Reker D and Duncan P 2001 Measuring health related quality of life in veterans with strokeKansas City MO VA Medical Center Health Services Research and Development GrantSTI-20-029 [online] Available from httpwwwhsrdresearchvagovresearchabstractscfmProject_ID-833265559 [Accessed 30 July 2009]

Rittman MR 2000 Culturally sensitive models of stroke recovery and caregiving afterdischarge home US Department of Veterans Affairs NRI 98183 Available from httpwwwhsrdresearchvagovresearchcompletedcfm [Accessed June 2007]

Rodrıguez T et al 2006 Trends in mortality from coronary heart disease and cerebrovas-cular diseases in the Americas 19702000 Heart 92 (4) 453460

Sanchez-Ayendez M 1998 Middle-aged Puerto Rican women as primary caregivers to theelderly a qualitative analysis of everyday dynamics In M Delgado ed Latino elders andthe twenty-first century issues and challenges for culturally competent research and practiceNew York Haworth 7598

Schwamm LH et al 2005 Recommendations for the establishment of stroke systems ofcare recommendations from the American stroke associationrsquos task force on thedevelopment of stroke systems Stroke 36 (3) 690703

Sotomayor M 1992 Social support networks Hispanic aging research reports I and IIWashington DC National Institutes of Health National Institute of Aging

Stansbury JP et al 2005 Ethnic disparities in stroke epidemiology acute care andpostacute outcomes Stroke 36 374386

Szinovacz ME and Davey A 2007 Changes in adult child caregiver networks TheGerontologist 47 (3) 280295

Triandis HC 1995 Individualism and collectivism Boulder CO WestviewUS Census Bureau 2007a Marital status of the population by sex race and Hispanic origin

1990 to 2007 Current population reports P20-537 and earlier reports and lsquoFamilies andLiving Arrangementsrsquo Available from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [Accessed July 2009]

US Census Bureau 2007b Families by number of own children under 18 years old 2000 to2007 Current population reports P20-537 and lsquoFamilies and Living ArrangementsrsquoAvailable from httpwwwcensusgovpopulationwwwsocdemohh-famhtml [AccessedJuly 2009]

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Villarreal R Blozis SA and Widaman KF 2005 Factorial invariance of a pan-Hispanicfamilism scale Hispanic Journal of Behavioral Sciences 27 (4) 409425

Weiss CO et al 2005 Differences in amount of informal care received by non-Hispanicwhites and Latinos in a nationally representative sample of older Americans Journal of theAmerican Geriatrics Society 53 146151

Wells JN et al 2008 Voices of Mexican American caregivers for family members withcancer Journal of Transcultural Nursing 19 (3) 223233

White CL et al 2003 Evolution of the caregiving experience in the initial 2 years followingstroke Research in Nursing amp Health 26 (3) 177189

Wilmoth JM 2001 Living arrangements among older immigrants in the United States TheGerontologist 41 228238

Zea MC Quezada T and Belgrave F 1994 Latino cultural values their role in adjustmentto disability Journal of Social Behavior 9 (5) 116

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Zsembik BA and Bonilla Z 2000 Eldercare and the changing family in Puerto RicoJournal of Family Issues 21 (5) 652674

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ovem

ber

2014