Journal of Advanced Nursmg, 1993,18, 39-45

Head-injured survivors: caregivers andsupport groups

Sonia Acorn RN PhDAssistant Professor, School of Nursing, The University of British Columbia, TF 301-2211Wesbrook Mall, Vancouver, British Columbta, V6T 2B5, Canada

Accepted for publication 28 Apn! 1992

ACORN S (1993) Journal of Advanced Nursmg 18, 39-45Head-injured survivors: caregivers and support groupsThe purposes of this study were to assess the needs of caregivers of head-mjuredsurvivors and the availability, use and helpfulness of support groups in meetingthese needs Demographic data on characteristics of the caregivers and of thehead-mjured survivor were also collected The majority of the caregivers weremothers of head-injured males and provided care for an average of 6 yearsSixteen of the respondents did not attend a support group, mainly due to theunavailability of support groups m their area of residence Support groups weremost helpful in meeting educational and psychological needs of caregivers Thefindings suggest the need for additional support groups, especially m smallercommunities, for additional educational content m support groups and for respitebeds

INTRODUCTION

There are approximately 50 000 individuals m Canadaannually who suffer a head injury (or 250 per 100 000)(Vargo et al 1986) For an estimated 20 000 to 30 000 ofthese mdividuals, the head trauma is senous (Ivan 1984)The effects of head injury can have profound effects on thephysical and emotional well-being of the survivor, and onfamily relationships (Brooks 1991)

The cnsis of head injury involves the family as well asthe individual When the survivor returns home fromhospital, family members must care for an individual withneuropsychological, behavioural and physical changes andthey are rarely equipped to meet this challenge (Blazyk1983, Livingston 1990) The family expenences changes mmantal relationships, daily routine and social activitieswhich tax the strength of even the most intact famibes(Livingston 1990, Mauss-Clum & Ryan 1981, Rogers1984) There is a gradual process of social withdrawal(Flonan et al 1989) leading to mcreased conflict and tensionwithm the family

Community-based care

The current trend toward community-based care withheavy family involvement has generated an mcreasedinterest m the role of family caregiver support groupsSupport groups are effective in providing emotionalsupport and information, reducing social isolation, decreas-ing the burden of caregiving and assistmg with the adjust-ment from hospital to home (Campbell 1988, Frye 1982,1987) Campbell (1988) assessed the needs of relativesbving with a head-injured survivor and the usefulness ofsupport groups in meeting these needs Support groupswere reported to be useful m meeting educational needs,for example, information on the effects of head injunes, andin meeting psychological needs, for example, being able totalk about one's feelings A limitation of the Campbellstudy was the small sample size of 14

The need for information about the consequences of headmjury has been documented by Mauss-Clum & Ryan (1981)Identified educational needs included (a) a clear explanationof the patient's condition and treatment, (b) discussion andrealistic expectations, and (c) emotional support

39

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Followmg hospitalization, educational needs continue asthe head-mjured (HI) survivor and family move forwardthrough an extended rehabilitation penod With themcreased survival rate of individuals with head mjunes andthe formation of support groups, there is a need to determinehow these groups can assist the family

THE STUDY

The purpose of this exploratory—descnptive study were (a)to determine the needs of the family (caregiver) while canngfor a head-mjured person at home, (b) to assess the avail-abihty, use and helpfulness of support groups in meeting theidentified needs, and (c) to document the demographics of aselect group of HI survivors and their family caregivers

METHODS

Participants and procedure

A survey questionnaire was mailed to 100 families through-out the province of Bntish Columbia (BC) This was thetotal number of families hsted with the BC Head InjuryAssociation and known to be canng for a head-mjuredrelative at home Anonymity was assured as the question-naires were mailed by the Head Injury Assoaation andsubjects were advised that they were under no obligationto participate m the study and could omit questions if theyso desired A follow-up letter was sent by the BC HeadInjury Association 3 weeks after the ongmal mailmgFifty-one (51%) of the families responded, with 42 (42%)questionnaires used in the analysis Nine returned ques-tionnaires were not used, either because the HI relative wasno longer Lvmg at home or large parts of the questionnairewere incomplete

Instrument

The questionnaire was adapted from one developed byCampbell (1988) The first part consisted of 22 items 15requesting information on demographics, four items onsituational influences and three items elicitmg mformationon causes for worry regarding the care of the HI relative

The second part of the questionnaire consisted of 17items addressing three areas educational needs, for example'to have information on the effect of head mjunes' (eightitems), psychological needs, for example 'to be able to talkabout my feelings' (five items), and stress managementneeds, for example 'to have time and activities for myselfoutside the home' (four items) First respondents were askedto identify which of the items were important to them

Respondents were then asked if attendance at a supportgroup was or was not helpful to them m meeting theidentified needs An invitation was extended to provide anyadditional comments which would assist m understandingthe needs of famihes of HI individuals

The ongmal Campbell (1988) instrument was developedfrom information gathered in a review of the literature onthe effects of severe HI on relatives The instrument wasexamined for face and content vahdity by three nurseclinicians who worked with severely head-injured patientsand their families, a minister who counselled severely head-injured individuals and their families, and one master ofscience degree candidate m the field of rehabilitationnursing who also had a severely head-mjured sibling Thereliability of the instrument was not tested

For the present study, the onginal mstrument was exam-ined by rehabilitation nurses who work with HI patientsand their families and suggestions for additional items weremade in the demographics section The instrument wasjudged by these nurses to have face and content validityThe revised instrument was then reviewed for clarity,effectiveness of instruction and overall presentation by agroup of baccalaureate nursing students, and editonalchanges were made as a result of their suggestions

RESULTS

The analysis consisted of descnptive statistics, providingfrequencies and percentages, wntten comments weresummanzed and categonzed into similar topics

Caregivers cmd care recipients

Twenty-seven (64%) of the caregivers were mothers canngfor a HI son (Table I) The majonty of the caregivers werein the 40-49 age group, had a high school diploma, and ayearly income of $20,000 or under Twenty-nine (69%) ofthe caregivers worked outside the home, of whom nineworked fiiU time (Table 2) Nineteen (45%) reported thatthey were the sole caregiver and the time spent in care-givmg ranged from 1 hour per week to more than 30 hoursper week

The most frequent age of the care reapients (HI survivor)was between 21 and 35 years (Table 3) The majonty hadnever mamed and had a high school education The HI hadoccurred anywhere from 1 to 17 years previously, with 6years as the average

Stressful issues/concerns for the future

The most stressful current issues for the caregiver weredecreased memory of the survivor, problems with deasion

40

Head-injured survivors

Table 1 Charactenstics of the caregivers (« = 42) Table 2 Situational influences

Gharactenstic Frequency Percentage Vanable

Age (years)

< 2 930-3940-4950-59> 6 0

GenderMaleFemale

Relationship to HI relativeSpouseMotherFather

SiblingCurrent mantal status

Mamed/common-lawWidowedDivorced or separatedNever mamed

Mantal status at time of injuryMamed/common-lawWidowedDivorced or separatedNever mamed

Educational levelElementary schoolHigh school diplomaCollege diplomaUniversity degreeOther

Yearly income ($)^20 00020 000-40 000> 40 000Data missing

1

7

21

94

2

40

1227

21

34

2

5

1

3812I

4

17

4

3

4

1913

73

2 416 750 0214

95

4 895 2

28 564 3

4 8

24

8 1 0

4 8

1 1 9

2 4

90 5244 8

2 4

9564 3

957 1

9 5

45 231016 7

7 1

making, mood swings, and the long-lasting dependency ofthe survivor Additional issues identified were lack ofinitiative and motivation, alcohol abuse, loss of income ofthe survivor, decreased academic abilities, seizures, lack ofconcem for looks/poor groommg, personality changes,lack of good rehabilitation services, survivor not realizingthat there is loss of short-term memory and therefore livesin the past, finding the 'nght' caregiver, finding appropnaterespite care, and the loss of time for self (caregiver)

Concems most frequently expressed about the future ofthe survivor were what would happen to the survivorshould something happen to the caregiver, availability of

Frequency Percentage

Caregiver works outside homeYesFull-time (9)Part-time (20)No

People living in home excludinginjured person and caregiver

0-23-5

Number of people providing careexcluding primary caregiver

0

1-2

^ 3Hours per week pnmary caregiverspends canng for/assistmg/supervising injured relative

1-5

6-1011-2021-30> 3 0Data missing

29

13

357

19

194

8

4

3

2

205

69 0

310

83 316 7

45 245 2

95

19 0957 1

4 84761 1 9

community resources, and financial resources Additionalconcems were need for suitable employment, ability to liveindependently, chemical dependency, young survivor m anextended care facility with the elderly, ability to marry, needfor good group homes, and chronic severe headaches Themost womsome concem was over the survivor's future,should something happen to the caregiver

Support groups and their helpfulness

Subjects were provided with a list of 17 items identifyingeducational, psychological and stress-management issuesand requested to indicate whether or not the items indicateda need for them (Table 4) Results indicate high educationalneeds to leam more about the effects of the head injury, toleam about community resources, and to have questionsanswered honestly by health professionals The highestpsychological needs were to know what the future holds forthe survivor, to be able to talk about one's feelings, to feelthat there is hope, and to have emotional support

Sixteen (38%) of the respondents were not attending asupport group, 15 of these because there was no support

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Table 3 Demographic charactenstics of the care reapient(head-injured relative) (n = 42)

Charactenstic Frequency Percentage

Age (years)< 1515-2021-2526-3536-45^46 yearsData missing

GenderMaleFemale

Current mantal statusMamed/common-lawWidowedDivorced or separatedNever marriedData missing

Mantal status at time of injuryMamed/common-lawWidowedDivorced or separatedNever mamedData missing

Educational levelElementary schoolHigh school diplomaCollege diplomaUniversity degreeOther (trade/tech)Data missing

Years since head injury< 11-43-9

10-1415-17

Years injured relative has livedat home

<55-9

10-14

27

1012461

3210

10—

229

1

13

281

16181331

6151263

27852

4 816 723 828 695

14 32 4

76 223 8

23 8—

4 869 0

2 4

310

66 72 4

38142 92 471712 4

14 335 728 614 371

64 319 01194 8

group in the area and one indicated previous attendance at asupport group hut had stopped going as more support wasbeing given than received The 24 who attended supportgroups found them to be most helpful in three areas having

questions answered honestly, receiving emotional support,and identifying community resources (Table 5) It shouldbe noted, however, that although the support groups weremost helpful in these three areas the number of respond-ents who indicated helpfulness was not as high as thoseindicating a need m the areas

It IS also important to note that in comparing the data inTables 4 and 5, the analysis was not able to discem that if anindividual identified a need m a certain area (Table 4),whether that same individual was included m the numberwho found the support group helpful in meeting that par-ticular need (Table 5) Support groups were perceived asless helpful in teaching methods of adjusting to thememory loss and behavioural changes of the HI individual,and providing information about financial resources

COMMENTS

Most participants took the time and initiative to provideadditional wntten comments which are summanzed underthe categories of caregivers, professionals and supportgroups

Caregivers

Comments on the needs of the caregiver to have some timeoff included 'the need for respite beds is cntical having aHI person at home makes one a pnsoner Not that we didn'tlove her, but that love is stretched to the limit at times andthe feeling can turn to hate' Another family wrote 'overthe years I could have used a break once in a while, maybe arespite bed' Other families wrote about the need for in-home help from professionals 'At home, staffing has been areal problem, fees from agencies are very high'

Professionals

Many commented on the poor communication betweencaregivers and health care professionals There was areported tendency of professionals to avoid talking aboutcertain aspects of the patient's future A strong concem wasexpressed about the lack of training of professionalsregarding people with HI

The treatment of the HI person and communication withrelatives by professionals was strongly cnticized 'Theprofessionals say all HI are different and then promptly tryto fit them all into one mould' 'There is an extreme lack oftraining in this held, and with the amount of people surviv-ing head trauma, I certainly hope the education and train-ing will improve I read everything I could find on head

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Table 4 Caregivers' reportedneeds (n = 42)* (table formatrepnnted from Campbell C H(1988) Rehabilitation Nursmg13(6), with permission of theAssoaation of RehabilitationNurses, Skokie, Illinois60077-1057 Copynght1988 Association ofRehabilitation Nurses)

'Respondents were asked to identifyall items which pertained to theirsituation

Need

EducationalTo learn about physical careTo have questions answered honestlyTo learn effects of head injuryTo learn methods of adjusting to memory lossTo leam methods of adjusting to behaviouralchangesTo know where to find someone to help withphysical careTo obtain information about financial assistanceTo leam about community resources

PsychologicalTo know what the future holds for my relativeTo talk about my feelingsTo have help with mantal adjustmentsTo have emotional supportTo feel that there is hope

Head-injured survivors

Importance of need

NotImportant

«(%)5(12)2(5)3(7)2(5)

2(5)

4(10)6(14)1(2)

1(2)7(17)5(12)2(5)

1(2)

Important

n (%)14 (33)39 (93)38 (91)31 (74)

31 (74)

19 (45)28 (67)39 (93)

40 (95)34 (81)23 (55)38 (90)39 (93)

NotApplicable

«(%)23 (55)

1(2)1(2)9(21)

9(21)

19 (45)8(19)2(5)

1(2)1(2)

14 (33)2(5)2(5)

Stress managementTo have time and activities for myself outside thehome 5 (12)To have help in reorganizing family chores/activities 6 (14)To guide our family in communication skills 5 (12)To have support from a religious institution 14 (33)

35 (S3) 2(5)

28 (67)31 (74)14 (33)

8(19)6(14)

14 (33)

injuries and I ended up knowing more than the health careprofessionals'

Another family wrote of their expenence 'The lnabibtyof professionals to communicate with families openly andhonestly was seen as a fundamental problem' The pro-fessional people certainly should be more receptive andhonest with the families who have to deal with such atraumatic and devastating incident' and 'it is very import-ant that health care professionals answer questionshonestly'

Support groups

The lack of fjimily support groups m many rural areas wasfrequently mentioned The study participants offered manysuggestions for support group content Families need toknow what to expect, what's ahead for them, and requiretraining on how to care for and retrain the survivor in daily

life skills Families need to understand that the behaviour,on the part of the survivor, is not 'intentional' and theyneed to leam how to help the survivor set goals that can beaccomplished and to encourage them toward goal achieve-ment One wrote The crucial time for famibes is thefirst few months following the injury Help, information,advocates would be so valuable at that time' Where togo for services for the survivor was also identified as asupport-group concem

DISCUSSION

What emerged from the demographic data was a profile ofthe caregiver of the HI adult mothers, mostly in theirforties, canng for an HI son aged 21 to 35, who had sus-tained the HI anywhere from 1 to 17 years previouslyAlthough the findings cannot be generabzed to othersettmgs due to the small sample size, some companson to

43

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Table 5 Helpfulness ofsupport groups (n = 24)*(table format repnnted fromCampbell C H (1988)Rehabilitation Nursing 13(6),with permission of theAssociation of RehabihtationNurses, Skokie, Illinois60077-1057 Copynght1988 Association ofRehabilitation Nurses)

'Respondents were asked to identifyall items which pertained to theirsituation

other findings appears warranted The fact that themajonty of the caregivers are female supports previousstudies (Niskala & Dewis 1989)

Previous research on caregivers of the elderly (Bunting1989), of those with Alzheimer's (Quayhagen & Quayhagen1988), and of those with multiple sclerosis (Niskala &Dewis 1989), indicates that the majonty of the caregiversare spouses In this study, due to the younger age group ofsurvivors, the majonty of the caregivers are mothersAlthough the majonty of the HI were males, the percent-age of female survivors (24%) was higher than that of otherstudies Holosko & Huege (1989) reported 10% female,Pnganto et al (1984) reported 17% female, Scherzer (1986)reported 22% female, and Tyerman & Humphrey (1984)reported 8% female

The findings suggest that support groups assist familiesto cope in certain areas with this major stressor in theirhves, a family member who has received a head injury, butthe findings also suggest that support groups could bemore helpful in these same areas Support groups assistedfamilies by providing emotional support, information on

Needs

EducationalTo learn about physical careTo have questions answered honestlyTo learn the effects of head injuryTo leam methods of adjusting to memory lossTo leam methods of adjusting to behaviouralchangesTo know where to find someone to help withphysical care

To obtain information about financial assistanceTo leam about community resources

PsychologicalTo know what the future holds for my relativeTo talk about my feelingsTo have help with mantal adjustmentsTo have emotional supportTo feel that there is hope

Stress managementTo have time and activities for myself outside thehomeTo have help m reorganizing family chores/activitiesTo guide our family in communication skillsTo have support from a religious institution

NotHelpful

«(%)5(21)4(17)4(17)9(38)

9(38)

7(29)8(35)6(25)

13 (54)4(17)8(33)4(17)5(21)

10 (42)

9(38)10 (42)7(29)

Helpful

n(%)6(25)

19 (79)16 (67)6(25)

6(25)

8(33)

9(39)17(71)

9(38)16 (67)6(25)

19 (79)16 (67)

6(25)

4(17)6(25)4(17)

NotApplicable

n (%)13 (54)

1(4)4(17)9(38)

9(38)

9(38)

7(25)1(4)

2(8)4(17)

10 (42)1(4)3(13)

8(33)

11(46)8(33)

13 (54)

community resources, and instilling a feeling of hope, thesefindings are consistent with those of Campbell (1988)Additional support groups are required in rural areas, as 15(33 7%) of the study sample do not have access to a supportgroup in their geographic area Support groups requirestructure m regards to educational content and shouldserve a combined education/support function

Goals of support groups

The goals of educational/support groups should be toprovide

1 educational information on caregiver skills, the effectsof head injuries, the development of coping skills,

2 information on how to access rehabilitative, financialand other needed services,

3 emotional support where families can discusswomes and concerns m a safe, accepting and supportiveenvironment,

4 soaal support where families can feel a sense ofbelongmg

44

Head-injured survivors

The participation of health care professionals m the

development and facilitation of these groups is warranted,

with the ongoing responsibility of the group clearly

centred in the community Health care professionals can

espeaally assist with developing the educational

component of educational/support groups

Future research

Future research needs to be directed toward evaluative

designs that allow for determining the effect of the group

intervention on vanables such as the well-being of the lay

caregiver and the family as a unit It is important to evalu-

ate the results of different interventions and thus develop a

deeper understanding of the efficacy of these interventions

Acknowledgements

Appreciation is extended to the Bntish Columbia Head

Injury Association for assistance in accessing the subjects

for this study and to the nursing staff of the G F Strong

Rehabilitation Centre for their advice and assistance with

the questionnaire development

Appreciation is extended to the Bntish Columbia

Medical Services Foundation and the University of

Bntish Columbia Humanities and Social Sciences Grants

Committee for funding this project

Especially appreciated are the caregivers of persons with

head lnjunes who participated in the study

References

Blazyk S (1983) Developmental crisis in adolescents followingsevere head injury Soaal Work in Health Care S (4), 55—67

Brooks D N (1991) The head-injured family Journal of Clinicaland Expenmental Neuropsychology 13(1), 155-188

Bunting SM (1989) Stress on caregivers ofthe elderly Advances

in Nursing Science 11(2), 63-73

Gampbell C (1988) Needs of relatives and helpfulness of supportgroups in severe head injury RehaMitation Nursmg 13(6),320-325

Flonan V, Katz S & Lahav V (1989) Impact of traumatic braindamage on family dynamics and functiomng a review BrainInjury 3{3), 219-233

Frye B (1982) Brain injury and family education needs Rehabili-tation Nursing 7(4), 27-29

Frye B (1987) Head injury and the family related hteratureRehabilitation Nursing 12(3), 135-136

Holosko M J & Huege S (1989) Perceived soaal adjustment andsocial support among a sample of head injured adultsCanadian Journal of Rehabilitation 2(3), 145-154

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Mauss-Clum N & Ryan MR (1981) Brain-mjury and the familyJournal of Neurosurgical Nursing 13, 165-169

Niskala H & Dewis M (1989) Multiple sclerosis the well-beingof family caregivers Unpublished mjinuscnpt University ofBntish Columbia, School of Nursing, Vancouver

Pnganto G P, Fordyce D J, Zeiner H K, Roeche ] R, Pepper M& Wood B G (1984) Neuropsychological rehabihtation afterclosed head injury in young adults Journal of Neurology,Neurosurgery, and Psychiatry 47(5), 505—513

Quayhagen M P & Quayhagen M (1988) Alzheimer's stresscoping with the caregiver role The Geroniologisi 28(3),391-396

Rogers P (1984) Family crisis following head injury a networkintervention strategy Journal of Neurosurgical Nursing 16,343-346

Scherzer PB (1986) Rehabihtation following severe headtrauma results of a three year program Archives of PhysicalMedicine & Rehabiliiaiion 67,366-372

Tyerman A & Humphrey M (1984) Changes in self conceptfollowing severe head injury International Journal of Rehabili-tation Research 7(1), 11-23

Vargo F, Dennis S, Ebert T, Wolfe S, Mueller H & Brintnell E S(1986) A social-vocational rehabihtation program for closedhead injured adults Rehabiliiaiion Digest 17(2), 7

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