Quality of life of Nigerian informal caregivers of community-dwelling stroke survivors

EMP IR ICAL STUD IES

Quality of life of Nigerian informal caregivers of community-dwelling stroke survivors

Grace Vincent-Onabajo PhD (Lecturer)1, Aisha Ali BMR (Physiotherapist)1 and Talhatu Hamzat PhD

(Professor)2

1Department of Medical Rehabilitation (Physiotherapy), University of Maiduguri, Maiduguri, Nigeria and 2Department of Physiotherapy,

University of Ibadan, Ibadan, Nigeria

Scand J Caring Sci; 2013; 27; 977–982

Quality of life of Nigerian informal caregivers of

community-dwelling stroke survivors

Background: Caregivers play important roles in the collab-

orative efforts that characterize successful stroke rehabili-

tation, and their quality of life (QoL) may have

implications for outcome of care.

Aim: This study explored the QoL of caregivers of commu-

nity-dwelling stroke survivors in north-eastern Nigeria.

Methods: Fifty-nine caregivers of community-dwelling

stroke survivors attending physiotherapy out-patients

departments of two government hospitals in the city of

Maiduguri participated in the study. Information on par-

ticipants’ age, gender, employment status, educational

background, relationship with the stroke patient, and

time after onset of stroke were obtained through inter-

view, while their QoL was assessed with WHOQoLBREF

questionnaire. Demographic and QoL data were summa-

rized with descriptive statistics, and influence of caregiv-

ers and care recipients’ factors on QoL was analysed

using Kruskal–Wallis test.

Results: Majority of caregivers were males (55.9%) and

provided care for their parents (69.5%) who had suffered

stroke within 1 year prior to study (72.9%). Mean scores

on all QoL domains were above average with the physi-

cal domain recording the lowest scores. Caregivers’ fac-

tors of age, educational background and employment,

and duration poststroke onset were significantly associ-

ated with domains of QoL.

Conclusion: Although QoL of stroke caregivers was fair

across domains, the physical domain recorded the lowest

mean scores. Older age, lack of formal education, unem-

ployment and caring for stroke patients within the sec-

ond year poststroke were associated with lower QoL

scores. Information from this study may aid in identifying

those caregivers who require support programmes and

care the most.

Keywords: stroke, caregivers, quality of life, Nigeria,

family.

Submitted 22 March 2012, Accepted 19 October 2012

Background

Stroke is a common neurological disease with high

rates of mortality and morbidity worldwide (1).

Although recent advances in health care have enabled

more people to survive a stroke, many of these survi-

vors experience persistent motor function deficits and

require assistance with activities of daily living (2).

Oftentimes, the assistance and care required by stroke

survivors is provided by their family and friends. The

physical and psychological well-being of these informal

caregivers has however been reported to be negatively

affected by the various care-giving services they render

(3). Caregivers of stroke survivors also experience

diminished Quality of Life (QoL) as a result of the

physical, emotional, financial and psychological burden

of stroke (4, 5).

Quality of life is defined as an individual’s perception

of their position in life in the context of their cultural

and value systems by which they live and in relation to

their goals, expectations, standards and concerns (6). It

also refers to a person’s subjective well-being and life sat-

isfaction which includes mental and physical health,

material well-being, interpersonal relationships within

and outside the family, work and other activities in the

community, personal development and fulfilment of

active recreation (7). The impact of care giving on the

caregiver’s QoL can be influenced by the demographic

attributes of the caregiver. Factors such as age, gender

and caregiver’s relationship with stroke survivor have

been identified by some studies as predictors of QoL

among stroke caregivers (8–10).

Correspondence to:

Dr. Grace Vincent-Onabajo, Department of Medical Rehabilitation

(Physiotherapy), University of Maiduguri P.M.B., 1069 Maiduguri,

Nigeria.

E-mail: [email protected]

© 2012 The Authors

Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science 977

doi: 10.1111/scs.12017

Due to the centrality and immense benefits of infor-

mal care giving among the components of health care

(11), supporting the caregiver serves as a critical aspect

of rehabilitating and reintegrating stroke survivors into

the community (12). Furthermore, with the shift in

emphasis from institutional to home-based care, research

interest in the QoL of caregivers of stroke survivors has

significantly increased in high-income countries (3).

However, only a few studies have been carried out on

this important subject matter in African countries (9,

13). Paradoxically, the informal care of stroke survivors

after hospital discharge in many African communities is

often the preserve of caregivers in the community and

home settings due to the shortage or nonexistence of

institutional care facilities. Furthermore, the cultural

structure in many African countries encourages commu-

nity and family care rather than institutional and nurs-

ing home care. This present study was designed to assess

the QoL of caregivers of stroke survivors in the Kanuri-

Hausa community of Maiduguri, North-Eastern Nigeria

with the aim of evaluating the influence of age, gender,

educational and employment status of the caregivers

and time after stroke of the care recipients, on the care-

givers’ QoL.

Based on observations from previous studies (4, 8–10),

we hypothesized that personal factors such as caregivers’

age, gender, employment and educational status, rela-

tionship with stroke survivor and duration of care giving

(estimated by poststroke duration) will significantly influ-

ence caregivers’ QoL.

Methods

Study location

This cross-sectional study was conducted at two govern-

ment hospitals (a tertiary and a secondary care hospital)

located in the city of Maiduguri, the capital of Borno

state, one of the six states in north-east region of Nigeria.

The approval of the Research and Ethical Committee of

the University of Maiduguri Teaching Hospital was

obtained prior to the commencement of the study.

Participants

Fifty-nine informal caregivers who accompany commu-

nity-dwelling stroke survivors for out-patients physio-

therapy sessions at the two hospitals participated in the

study. A caregiver was included in the study if he or she

had the informal responsibility of looking after a stroke

survivor in the home; gave verbal/written informed con-

sent and understood written and verbal information in

English language due to the unavailability of translated

and validated versions of the main measure utilized in

the study, namely the World Health Organization Quality

of Life brief version questionnaire (WHOQoLBREF), in

the two predominant indigenous languages (Hausa and

Kanuri language) of the population in the study location.

Information on the caregivers’ age, gender, educational

background, employment status and relationship with

stroke survivors, and poststroke duration was obtained

using an information data form while quality of life was

assessed with WHOQoLBREF.

Measure

The WHOQoLBREF contains 26-items that assess general

health and QoL status, and QoL in psychological, physi-

cal, social relationship and environmental domains. The

questionnaire was self administered by respondents with

the required ability, otherwise it was interviewer admin-

istered (6). Scores were calculated in a positive direction

and raw score on each domain of the WHOQoLBREF

was transformed to a scale of 0–20 with higher scores

denoting better QoL. The internal consistency of the

WHOQoLBREF ranges from 0.70 to 0.77 of Cronbach’s

alpha for the four domains.

Data analyses

Descriptive statistics of mean, standard deviation, fre-

quency and percentages were used to summarize the

socio-demographic data and QoL scores. To test the

study’s hypotheses, Kruskal–Wallis test was used to ana-

lyse the influence of caregivers’ socio-demographic char-

acteristics and poststroke duration on their QoL scores.

For this purpose, caregivers were categorized by age group

(14–30 and 31–55 years), educational background (pri-

mary, secondary, postsecondary and none), employment

(employed, unemployed and schooling) and poststroke

duration (1–12, 13–24 and above 24 months). Caregivers’

relationship with stroke survivors was also categorized

into family and acquaintance (specific relationship such

as spouse, sibling and child were however utilized for

purposes of descriptive statistics). Data analyses were per-

formed with the SPSS version 15 (SPSS Inc., Chicago, IL,

USA) with level of statistical significance at p = 0.05.

Results

Fifty-nine stroke caregivers participated in the study.

Majority of the caregivers were males (55.9%), and chil-

dren of stroke survivors (69.5%) and their ages ranged

from 14 to 55 years with a mean of 29.2 � 9.6 years.

Data on educational and employment status also showed

that majority of the caregivers were undergoing or had

completed postsecondary education (61%) and were

employed (45.8%). Mean poststroke duration for the

care recipients was 11.9 � 11.26 months. Socio-demo-

graphic data of caregivers are presented in Table 1.

978 G. Vincent-Onabajo et al.

© 2012 The Authors

Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science

QoL of caregivers

Caregivers’ mean score for each of the four QoL domains

assessed, namely physical, psychological, social relation-

ships and environment domains, was above average

(Table 1). The mean score for the physical domain was

however lowest (14.75 � 3.12), while the highest mean

score was obtained in the environment domain

(15.58 � 2.26).

QoL and caregivers’ gender

Quality of life of the caregivers was not significantly

influenced by their gender. Female caregivers however

had slightly higher mean scores in all four domains of

QoL (Table 2).

QoL and caregivers’ age

Caregivers were categorized into two age groups; those

aged 14–30 years, and those in the 31–55 years group.

Caregivers in the younger age group had significantly

higher mean scores in the physical (15.5 � 3.1), social

relationship (16.2 � 3.2) and environment (16.0 � 2.4)

domains (Table 2). Psychological QoL domain mean score

was also higher for caregivers in 14–30 years age group,

although without statistical significance.

QoL and educational status of caregivers

Significant association was observed between the physical

domain of QoL and educational background of caregivers.

Highest physical domain mean score (16 � 3.2) was

obtained by caregivers with not more than secondary

education while those without formal education scored

lowest (10.5 � 0.7). Although without statistical signifi-

cance, caregivers without formal education however had

highest mean scores in the psychological (15.5 � 0.7)

and environment (16 � 0.0) domains of QoL.

QoL and employment status of caregivers

Employment status was significantly associated with the

physical and environment QoL domains, with caregivers

who were schooling having higher mean scores

(15.8 � 3.1 and 16.4 � 1.8, respectively). Unemployed

caregivers had the lowest mean scores in all the four QoL

domains (Table 2).

QoL and relationship with stroke survivor

Table 2 shows that QoL of caregivers in this study was

not significantly influenced by being either family or

acquaintance of stroke survivors. However, caregivers

who were acquaintances of stroke survivors had higher

mean scores in the physical (16.8 � 1.3) and social

relationship (17.8 � 2.2) QoL domains than family

caregivers.

QoL and poststroke duration

The only care recipient variable assessed was time after

onset of stroke, and it was found to significantly influ-

ence the environment domain of caregivers’ QOL. Care-

givers of individuals who had survived a stroke for a year

or less had highest mean score in environment QoL

(15.9 � 2.2). Also in the physical (15.1 � 3.0), psycho-

logical (15.1 � 2.0) and social relationship (15.9 � 3.3)

domains of QoL, these caregivers had highest mean

scores although with no statistical significance (Table 2).

Discussion

Mean scores for all the QoL domains in this study was

above average. However, normative data representative

of the demographic characteristics of our participants are

not available in the literature for purposes of comparison.

Of the four domains of QoL, caregivers rated the physical

domain lowest although findings from previous studies

showed that the psychological and social QoL domains

were the most severely compromised in stroke caregivers

(8, 14–16). Our finding appears to reflect the negative

effect of physical aspects of caring for stroke patients on

Table 1 Characteristics of the stroke caregivers (N = 59)

Variable n %

Gender

Male 33 55.9

Female 26 44.1

Age (years)

Mean (SD) 29.24 (9.68)

Range 14–55

Employment

Employed 27 45.8

Unemployed 17 11.9

Schooling 15 42.4

Educational background

Primary 9 15.3

Secondary 12 20.3

Postsecondary (Completed/Ongoing) 36 61.0

None 2 3.4

Relationship

Child 41 69.5

Sibling 10 16.9

Spouse 4 6.8

Acquaintance 4 6.8

QOL domain scores, Mean (SD)

Physical 14.75 (3.12)

Psychological 14.85 (2.16)

Social relationship 15.56 (3.15)

Environment 15.58 (2.26)

QoL of stroke caregivers 979

© 2012 The Authors


caregivers’ physical well-being (4). Poststroke functional

limitations often leave the responsibility of helping the

stroke survivor with transfers as well as basic and instru-

mental activities to the caregiver (2). Furthermore, in

this community of Nigerians, caregivers traditionally

accompany stroke survivors for physiotherapy sessions

and are taught to administer and assist stroke survivors

with home exercises which may increase the physical

demands of care giving.

The predominance of male caregivers in this present

study contrasts findings from studies of caregivers of

stroke survivors in developed countries (4, 17). Our find-

ing is also inconsistent with the preponderance of female

caregivers reported in a study carried out in south-

eastern Nigerian (9). The gender difference observed

between our study and previous studies may be indica-

tive of the comparatively secluded lives the Kanuri-Hausa

females of the northern part of Nigeria lead. This in effect

leaves the duty of accompanying patients to the hospital

to males while females administer care from the home

fronts. The fact that our study was hospital based there-

fore calls for cautious generalization of the male predom-

inance observed. Gender however did not significantly

differentiate QoL of caregivers in this study in contrast

with previous reports (4, 9, 17).

The influence of age on QoL of caregivers observed in

this present study, with older caregivers having lower

scores in almost all QoL domains, is consistent with

Table 2 Kruskal–Wallis test for difference in caregivers’ quality of life by selected variables

Variable

QOL domains – mean (SD)

Physical Psychological

Social

relationship Environment

Gender

Male 14.7 (3.2) 14.8 (2.1) 15.5 (3.2) 15.5 (2.0)

Female 14.8 (3.0) 14.9 (2.2) 15.7 (3.1) 15.7 (2.6)

KW 0.001 0.50 0.01 0.62

p-value 0.97 0.47 0.92 0.43

Age group (years)

14–30 15.5 (3.1) 15.1 (2.1) 16.2 (3.2) 16.0 (2.4)

31–55 12.9 (2.3) 14.3 (2.3) 14.1 (2.7) 14.6 (1.4)

KW 8.94 0.64 5.92 6.16

p-value 0.00* 0.42 0.02* 0.01*

Educational background

Primary 13.2 (3.0) 14.1 (1.6) 14.0 (3.4) 14.7 (2.3)

Secondary 16.0 (3.2) 14.2 (1.8) 16.3 (3.0) 15.1 (1.8)

Postsecondarya 14.9 (2.9) 15.2 (1.8) 15.8 (3.1) 15.9 (2.4)

None 10.5 (0.7) 15.5 (0.7) 13.5 (2.1) 16.0

KW 7.94 5.36 4.63 4.93

p-value 0.05* 0.15 0.20 0.18

Employment

Employed 14.5 (2.9) 14.6 (2.3) 15.5 (3.2) 15.3 (2.6)

Unemployed 11.7 (2.1) 14.3 (2.8) 13.9 (2.9) 13.9 (1.3)

Schooling 15.8 (3.1) 15.3 (1.8) 16.0 (3.1) 16.4 (1.8)

KW 9.82 1.60 2.81 8.87

p-value 0.01* 0.45 0.24 0.01*

Relationship

Family 14.6 (3.2) 14.9 (2.2) 15.4 (3.2) 15.6 (2.3)

Acquaintance 16.8 (1.3) 14.0 (2.4) 17.8 (2.2) 14.8 (1.7)

KW 1.90 0.87 1.92 0.84

p-value 0.16 0.34 0.16 0.36

Post stroke duration (months)

1–12 15.1 (3.0) 15.1 (2.0) 15.9 (3.3) 15.9 (2.2)

13–24 13.4 (3.4) 14.0 (2.7) 14.2 (2.5) 14.4 (1.1)

>24 14.4 (2.3) 14.6 (2.3) 15.2 (2.9) 15.4 (3.6)

KW 2.52 1.11 2.86 5.92

p-value 0.28 0.57 0.24 0.05*

aOngoing/completed postsecondary education KW = Kruskal–Wallis Chi-square.

*Significant at p = 0.05.


© 2012 The Authors


findings from previous studies (8, 14). However, a major

difference between our findings and majority of the pre-

vious studies is the young age of our participants. While

stroke caregivers studied in Canada, Japan, United King-

dom and Australia were in their 50s and 60s (4), the

average age of caregivers in our study was 29 years. The

age distribution of caregivers from these developed coun-

tries could be because majority of the caregivers were

spouses of the care recipients (4). Our study, like the

earlier one conducted in south east Nigeria (9), however

had younger caregivers with majority being children of

the stroke survivors. The culture of the Nigerian people

that often reserves the responsibility of care giving for

the offspring of an individual suffering ill-health is rein-

forced by these findings.

Majority of the caregivers in this study had completed

or were undergoing postsecondary education, a pattern

that could be due to the age distribution of the caregiv-

ers. Available data from the 2008 Nigeria Demographic

and Health Survey Statistics (NDHS) (18) show that

approximately 9.8% of Nigerians aged 25–34 years have

more than secondary education. There is also a growing

societal emphasis on further education in Nigeria with

the desire of younger generations of Nigerians to obtain

higher education on the increase, and this is more so

with establishment of more postsecondary educational

institutions in the country compared to what obtained in

the past. As this study was hospital based, the fact that

majority of the caregivers in this study had higher educa-

tion may have influenced the choice of medical care and

rehabilitation for their care recipients over alternative

and traditional treatments that are still very prevalent in

Nigeria.

Employment status and educational background of the

caregivers significantly influenced the physical and envi-

ronmental aspects of their QOL with the unemployed

and those with no formal education recording the low-

est mean scores. Generally, unemployment is linked

with poor QoL, and unemployed individuals are

reported to exhibit different degrees of dissatisfaction

with life (19). The low QoL among unemployed caregiv-

ers could therefore be considered as resulting from both

the adverse effect of unemployment and the responsibil-

ity of caring for stroke patients. However, one study

reported that unemployment had a positive effect on

the QoL of spousal caregivers of stroke survivors (20).

Although few studies have explored the influence of

educational background of caregivers on their QoL (4),

the significantly low physical domain scores observed

among caregivers with no formal educational back-

ground implies the need of this category of caregivers

for more information and enlightenment on the physical

aspects of care giving.

Caring for stroke patients who had suffered stroke

within 1 year was associated with better QoL compared

with longer poststroke periods. The ability of caregivers

to cope well with their role at the initial periods after

onset of stroke has been identified by previous studies

(5). The early period after onset of a disease is often char-

acterized by enormous support for the patient and his/

her caregivers which may help cushion the burden of

care giving at such times. However, following survival

and increasing time after a disease condition, support

often wanes leaving the primary caregivers with the sole

responsibility of providing informal care with a conse-

quent negative effect on their well-being. Results of a

longitudinal study of caregivers of stroke patients at dif-

ferent time points after stroke indicated that adverse psy-

chosocial consequences were more severe with increasing

time after stroke, and this was strongly associated with

lesser social support and network for the caregivers (21).

The only significant influence of time after stroke in this

present study was however on the environment domain

of QoL, a domain that entails availability of financial

resources, accessibility to health and social care and par-

ticipation in leisure activities.

There were some limitations in this study. Being a hos-

pital-based study, only caregivers of stroke survivors

receiving physiotherapy participated, and thus, the find-

ings might not be generalizable to all caregivers of stroke

survivors in the study location. This study also did not

obtain information on care recipients’ attributes such as

gender, age and level of functioning, all of which could

have influenced the QoL of the caregivers. Data collec-

tion took place during the therapy sessions for the stroke

survivors (caregivers were available to participate in the

study at these times) and stroke survivors’ information

could not be obtained during the sessions, especially

objective assessment of their functional status. Future

studies should be conducted in the community to elimi-

nate selection bias with consideration for the demo-

graphic and clinical data of the stroke survivors being

cared for.

Conclusion

Quality of life of stroke caregivers in this study, although

above average in all domains, was observed to be lowest

in the physical domain. Caregivers’ age, educational

background and employment status were observed to

significantly influence the physical, social relationship

and environmental domains of QoL, with unemployed,

uneducated and older caregivers recording lower scores.

Caregivers of patients who had suffered stroke from 1 up

to 2 years were also at increased risk of low QoL in the

environmental domain. Strategies such as education and

training of caregivers on the physical aspects of care such

as lifting and assisting with ADLs should be adopted and

routinely provided to reduce the impact of care giving on

the physical well-being of caregivers. The comparatively

QoL of stroke caregivers 981

© 2012 The Authors


lower QoL of older, uneducated and unemployed stroke

caregivers implies the need for provision of appropriate

intervention and support for this categories of caregivers.

Author contribution

Grace Vincent Onabajo designed the study, analysed

data, drafted and reviewed the manuscript for intellectual

content, and provided supervision. Aisha Ali collected

and analysed data, and drafted the manuscript. Talhatu

Hamzat drafted and reviewed the manuscript for intellec-

tual content. All the authors provided material support.

Ethical approval

The study was approved by the Research and Ethical

Committee of the University of Maiduguri Teaching Hos-

pital (UMTH), Nigeria.

Funding

The authors received no financial support for the

research.

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Documents

Quality of life of Nigerian informal caregivers of community-dwelling stroke survivors