Abstract
Background:
The involvement of informal caregivers (CGs) in the provision of care for stroke survivors always ensures the success of stroke rehabilitation.
Aims:
The aim of this review was to find the determinants of caregiving burden and quality of life (QOL) of CGs of African stroke survivors.
Methods:
The literature was searched in Google Scholar and PUBMED, AJOL and Cochrane Databases using selected search strategies without date restriction.
Results:
A total of eight African studies met the inclusion criteria. There were more female stroke CGs (55.6%) than their male counterparts. The determinants of CG QOL were duration and burden of caregiving, the CG’s age and functional status of the stroke survivors. The determinants of caregiving burden were functional status of stroke survivors and having intimate relationship with them.
Conclusion:
Impairment of physical function in African stroke survivors was the consistent determinant of increased caregiving burden and deterioration of CG QOL. CG education and training is needed in order to enhance their ability to cope effectively with the burden of providing care to stroke survivors who have impairment of physical function and this may help to improve CG QOL.
Introduction
The involvement of informal caregivers (CGs) in the provision of care for stroke survivors always ensures the success of stroke rehabilitation. Informal CGs provide physical help and psychosocial support to stroke survivors [1], [2].The sudden onset coupled with inadequate knowledge of the condition may catch informal CGs unprepared or have unrealistic expectation of recovery which may predispose them to enormous caregiving burden. Sometimes stroke CGs are unable to pay adequate attention to their own personal and health needs [3] and this could lead to negative health outcomes [4], [5].
Being an informal CG is defined as being “an unpaid person who is most closely involved in taking care of stroke survivor, but not necessarily living with the patient” [6]. Caregiving burden is defined as “a multidimensional response to the negative appraisal and perceived stress resulting from taking care of an ill individual” [7]. The determinants of caregiving burden have been reported in the literature and these include patient-related factors such as severe disabilities [6], [7], [8], [9], poor cognition [6], [8], [10], and depression [6], [8]; and caregiving related factors such as duration of caregiving [8], [9], [11], anxiety and depression [6], [7], [8], [9] and the CG’s general health [11].
According to the World Health Organization [12], quality of life (QOL) is defined as “individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”. The determinants of QOL of informal stroke CGs have been reported to include functional status of stroke survivors [13], depression in the patients or their CG [14], [15], psychosocial factors [16], and the general health [3], [15] and age [15] of the CG.
Caring for stroke survivors can be both physically and psychologically challenging to the informal CG. Studies from Africa have shown that stroke CGs experienced emotional distress [17], severe caregiving strain [18], [19], [20], [21], [22], [23] and deterioration of CG QOL [18], [19], [24], [25]. Assessing the factors that are likely to increase caregiving burden or worsen CG QOL will help in developing effective strategies for mitigating the effect such factors have on the burden experienced or on the QOL of the CG. The aim of this review was to find the determinants of caregiving burden and QOL of CGs of African stroke survivors.
Methods
The literature was searched without date restriction in Google Scholar, PUBMED and African Journals OnLine (AJOL) and Cochrane databases using the following search strategies.
(Stroke or post stroke or CVA) and (caregiver or carer) and (quality of life or health related quality of life) and (Africa)
(Stroke or post stroke or CVA) and (caregiver or carer) and (burden or strain or stress) and (Africa).
Search strategies 1 and 2 were used to search for literatures in the other three data bases with the exception of the AJOL.
The search in AJOL was done differently, single search terms such as “stroke” “caregiver” “burden” and “quality of life” were used separately (the search in AJOL using strategies 1 and 2 did not produced any result).
Inclusion criteria
The following were the inclusion criteria: (1) studies that assessed QOL among African stroke CGs and its associated factors, (2) studies that assessed stroke caregiving burden/strain and its determinants in an African setting, (3) studies of at least moderate quality, (4) African studies that assessed both caregiving burden and CG QOL, (5) access to full length of the research report and (6) articles that were published in English language.
Results
The search in the AJOL with the word “stroke” returned 371 articles, “caregiver” 106 articles, “burden” 500 articles and “quality of life” 56 articles giving a total of 1033 articles from AJOL. The search in the other databases yielded a total of 900 articles (Cochrane 3, PUBMED 17 and Google Scholar 880 articles) this gave a total of 1933 articles. Duplicates were removed and title/abstracts were screened for relevant articles and eight articles were finally reviewed (Figure 1).
Flow chart for the review.
Assessment of the quality of reviewed studies
Seven of the studies in this review were cross-sectional surveys and one study used a mixed method design. The National Institutes of Health (NIH) quality assessment tool for observational cohort and cross-sectional studies were used to rate the quality of the cross-sectional surveys [33]. It was, however, observed that items 6, 7, 8, 10, 12 and 13 of the NIH tool were more appropriate for evaluating methodological quality of cohort studies. Applying such items in appraising cross-sectional studies may lead to bias; such items were therefore not used in the quality assessment. The study with a mixed method design has the quantitative part rated with NIH instrument while the qualitative part was assessed with Critical Appraisal Skills Program (CASP) qualitative research checklist [34]. The common methodological flaws observed in most of the cross-sectional studies were: inadequate description of selection criteria, no justification of sample size used, lack of description of how recollection bias was prevented during retrospective measurement of exposure such as CG strain/burden and lack of statistical adjustment of confounding variables. The studies in this review were rated to be of moderate quality. Most of them scored 4/8 and above, see Table 1.
Assessment of quality of studies using the NIH quality assessment tool and the CASP check list for qualitative studies.
| Authors | Clear research question or goal | Study population clearly defined/specified | Participation rate of eligible persons at least 50% | Were the same selection criteria used for all subject involved? Were groups recruited from same population? | Sample size justification | Were the exposure measures (independent variable) clearly defined, valid, reliable, with consistent implementation across all participants | Were outcome measures (dependent variable) clearly defined, valid, reliable, with consistent implementation across all participants | Were key potential compounding variables measured and adjusted statistically | ||
|---|---|---|---|---|---|---|---|---|---|---|
| Ogunlana et al. [18] | √ | √ | √ | √ | √ | No | Psych-props not reported | No | ||
| Akosile et al. [19] | √ | √ | √ | √* inadequate s. crit. | No | No | √ | No | ||
| Akosile et al. [20] | √ | √ | √ | √* inadequate s. crit. | No | No | √ | No | ||
| Fatoye et al. [17] | √ | √ | √ | √* diff population? | No | No | √ | No | ||
| Akosile et al. [24] | √ | √ | √ | √* inadequate s. crit. | No | No | √ | No | ||
| Vincent-Onabajo et al. [25] | √ | √ | √ | √ | No | No | √ | No | ||
| Gbiri et al. [21] | √ | √ | √ | √ | No | No | √ | No | ||
| Hassan et al. [22]a | √ | √ | √ | √ | √ | No | Psych-props not reported | No | ||
| Authors | Was there a clear statement of the aims of the research? | Is a qualitative methodology appropriate? | Was the research design appropriate to address the aims of the research? | Was the recruitment strategy appropriate to the aims of the research? | Were the data collected in a way that addressed the research issue? | Is the relationship between researcher and participants been adequately considered? | Have ethical issues been taken into consideration? Has approval has been sought from the ethics committee? Any sufficient information on how the research was explained to participants and issues around informed consent or confidentiality? | Was the data analysis sufficiently rigorous? | Is there a clear statement of findings? | How valuable is the research? |
|---|---|---|---|---|---|---|---|---|---|---|
| CASP qualitative research checklist | ||||||||||
| Hassan et al. [22]a | √ | √ | √ | √ | √* (was the data recorded with tape? Video? Or jotted?) | No | √* was the study procedure clarified to participants? | √ | √ | √ |
√, Satisfied; No, not satisfied; √*, Information provided was not very sufficient; psych-props, psychometric properties; s. crit., selection criteria; ‘diff population’, groups were derived from different populations; astudy used a mixed method design.
Demographic characteristics of African stroke CGs
A total of 381 stroke survivors and 597 CGs were studied. There were more female stroke CGs (55.6%) than male CGs (44.4%). The mean age of the stroke survivors range from 53 years [22] to 60.54 years [20] and the mean ages of their CGs ranged from 29.2 years [25] to 48 years [22]. Most of the CGs in this review (44.9%) were the children of the stroke survivors (Table 2).
Socio-demographic characteristics of African stroke caregivers.
| Authors | Stroke survivors (SSV) | Caregivers (CGs) | ||||||
|---|---|---|---|---|---|---|---|---|
| Mean age, years | n Male | n Female | Total | Mean age, years | n Male | n Female | Total | |
| Ogunlana et al. [18] | 60.40 | 55 | 75 | 130 | 41.1 | 74 | 56 | 130 |
| Akosile et al. [20]b | 60.54 | 49 | 42 | 91 | 34.63 | 36 | 55 | 91 |
| Fatoye et al. [17] | – | 57 | 46 | 103 | 41.20 | 35 | 68 | 103 |
| Hassan et al. [22] | 53.00 | 33 | 24 | 57 | 48.00 | 06 | 51 | 57 |
| Vincent-Onabajo et al. [25] | – | – | – | – | 29.24 | 33 | 26 | 59 |
| Gbiri et al. [21] | 59.6 | – | – | – | 39.2 | 81 | 76 | 157 |
| Total | 194 (50.9%) | 187 (49.1%) | 381 (100%) | 265 (44.4%) | 332 (55.6%) | 597 (100%) | ||
| Immediate family members | Others | Total | ||||||
|---|---|---|---|---|---|---|---|---|
| Spouse | Child | Parents | Siblings | Other relativesa | Friends | |||
| CG Relationship with SSV | ||||||||
| Ogunlana et al. [18] | 30 | 58 | – | – | 42 | 130 | ||
| Akosile et al. [20]b | 14 | 46 | – | 4 | 27 | – | 91 | |
| Fatoye et al. [17] | 52 | 36 | – | – | 15 | – | 103 | |
| Hassan et al. [22] | 22 | 12 | 11 | 5 | 7 | – | 57 | |
| Vincent-Onabajo et al. [25] | 4 | 41 | – | 10 | 4 | – | 59 | |
| Gbiri et al. [21] | 45 | 75 | – | 21 | 16 | – | 157 | |
| Total | 167 (28.0%) | 268 (44.9%) | 11 (1.8%) | 40 (6.7%) | 111 (18.6%) | 0 (0.0%) | 597 (100%) | |
aOther relatives, grandchildren niece/nephew, uncles/aunts, cousins; –, data not available; n, frequency; CG, caregiver; SSV, stroke survivor. bSome articles of these authors were not included in this table because they are analysis of secondary data.
Duration of care for stroke survivors
In this review, a study found that the average duration of caregiving post stroke was 19.64 months [20]. It was 11.9 months in another study [25] while the majority (46.6%) of the CGs spent between 13 and 24 (average 18.5) caregiving months [17].
Daily hours of providing care for stroke survivors
About 60.5% [21] to 84% [22] of the CGs were reported to have spent more than 5 h daily providing care to stroke survivors while most of the participants in a study [18] were reported to have spent a minimum of 10 caregiving hours daily.
Actual caregiving tasks perform by African CGs
The actual caregiving tasks perform by the CGs were reported by only two of the reviewed studies. CGs were involved in taking care of the children of stroke survivors [22], providing financial support, grooming and helping stroke survivors with ambulation [21].
QOL of the CG of African stroke survivors
Different terms were used by the authors to describe CG QOL as not too severely affected. QOL was said to be “modest” [19], “above average” [25] and “rated fairly well” [24]. The QOL of CG was reported to be above 62% in a study [18] as presented in Table 3. On average, one can conveniently say that African stroke CGs enjoy moderate QOL.
Burden and quality of life of African stroke caregivers.
| Author | Sample size/ mean age | Study design | Outcome measures | Level of caregiver (CG) burden | Level of CG QOL | Determinants of caregiving burden and CG QOL |
|---|---|---|---|---|---|---|
| Ogunlana et al. [18] | 130 CG aged 41.1±14.0 yrs. 130 SSV aged 60.4±10.9 yrs | Cross-sectional survey | PWBI Modified CSI | Mean CG burden score was 14.6 (range 0–24) | The mean QOL score in the CG was 62.4±17.1 | Lower functional status of SSV was associated with lower QOL and higher CG strain. CG burden has negative relationship with CG QOL. Female CG had higher QOL score compared to males Younger age and shorter post stroke duration predict higher QOL |
| Akosile et al. [19] | 91 caregivers | Cross-sectional survey | CRSI and SF-12 | 66 (83.5%) of CG have significant burden more in females | Overall QOL was modest | QOL scores were lower for CG with high level of burden. Females (gender) have significantly lower QOL in the mental, general health and vitality QOL domains |
| Akosile et al. [20] | 91 SSV aged 60.54±12.73 yrs. 91 CG 34.63±13.98 yrs | Cross-sectional survey | CRSI | 75 (82.4%) of CG had significant burden more in females | – | Being a family member, a Female CG or CG of female SSV were more burdensome than being male CG or caring for male SSV. CG burden positively correlated with gender and negatively with post stroke duration |
| Fatoye et al. [17] | 103 CG aged 41.2±3.9 yrs and 103 controls aged 42.5±14.4 yrs | A cross-sectional study | WHOQOL- BREF | – | CG have lower QOL than controls. But emotional symptoms did not predict QOL | High QOL: was predicted by female gender of CG, Longer duration of caring, and intimate relationship with the SSV and higher levels of SSV’s age and education. Low QOL: was predicted by higher age of CG and each of SSV’s depression, (female) gender, paresis and being uncooperative |
| Akosile et al. [24] | 91 SSV aged 65.54±12.73 yrs and 91CG 34.63±13.98 yrs old | Cross-sectional survey | SF-12 | – | CG rated their QOL fairly well (mean 34.91, range 12–47) | Old age and female gender of CG and closeness in relationship to SSV were related to poorer CG QOL scores. Males CG have significantly higher QOL than female CG |
| Vincent-Onabajo et al. [25] | 59 CG | Cross-sectional survey | WHO-QOL Bref | – | CG experienced above average QOL | Older age, lack of formal education, unemployment of CG and Longer duration of caring for SSV for longer post stroke periods were associated with lower QOL scores in the CG |
| Hassan et al. [22] | 57 CG aged 48 (range, 20–81) yrs and SSV aged 53 (range 18–83) yrs | Concurrent mixed method | CSI and structured interviews | 58% of the CG had high levels of train | – | Physical dependency, personality changes, cognitive and perceptual problems of SSV impact on CG strain. Loss of employment and emotional pressure of CG impacted on CG strain (quantitative data). Burden was aggravated by financial problems (qualitative data) |
| Gbiri et al. [21] | 157 patients aged 59.6 (range, 20–79 yrs). 157 CG aged 39.2(range, 17–36 yrs) | Cross-sectional survey | Modified CSI and Burden interview | 96 had subjective moderate strain and 125 objective mild strain | Burden were increased by longer stroke duration, more hours of caregiving per day, closer intimacy with SSV and fewer number of CG per patient |
CRSI, Carer strain index; PWBI, personal well-being index; CSI, caregiver strain index; SSV, stroke survivor; CG, caregiver; QOL, quality of life; WHOQOL-Bref, World Health Organization Quality of Life Instrument; yrs, years.
Burden of caring for African stroke survivors
In this review, most African stroke CGs – 58% [22], 82.4% [20] 83.5% [19] had severe caregiving burden. Only one study of moderate quality [21] found a differing result with most of the CGs (79.6%) having mild objective caregiving burden (Table 3).
Determinant of stroke CG QOL
This result section presents only factors that were reported to have consistently influenced or associated CG QOL by at least two of the studies included in this review.
Female gender of the stroke CG
Two studies reported that female gender of stroke CGs was associated with higher CG QOL [17], [18]. In contrast, female CGs were reported to have worse QOL in two other studies of similar methodological qualities [19], [24], hence, the influence of female gender of the CG on QOL was not clear (Table 3).
Age of the stroke CG
Four of the studies in this review unanimously reported that older CGs experienced worse QOL [17], [18], [24], [25].
Amount of caregiving burden experienced
Two studies revealed that a high amount of caregiving burden was associated with deterioration of QOL of the CG [18], [19] (Table 3).
Degree of impairment of physical function in stroke survivors
In this review physical dependency of the stroke survivor was found to be associated with a deterioration of CG QOL [17], [18] (Table 3).
Duration of providing informal care for stroke survivors
Two studies in this review [18], [25] found that shorter duration of caregiving post stroke was associated with higher QOL. But another study [17] found a differing result where it was reported that longer duration of caring predicted higher QOL (Table 3).
Determinant of stroke caregiving burden
This result section presents only factors that were reported to have consistently been associated with caregiving burden by at least two of the studies included in this review.
Impairment of physical function in stroke survivors [18], [22] and having close relationship with the survivors [20], [21] were the factors associated with increased levels of caregiving burden (Table 3). The influence of duration of caregiving on CGs’ burden was not clear from studies [20], [21] presenting conflicting outcomes (Table 3).
Discussion
In this review, most African CGs were reported to enjoy moderate QOL. It would, however, be very difficult to make any categorical statement concerning whether there is significant change in their QOL as only one study of moderate quality revealed that African stroke CGs experienced significantly lower QOL than controls [17]. Another reason could be because almost all the studies in this review are cross-sectional surveys and the design does not permit assessment of changes in stroke CG QOL with time, unlike cohort studies.
Determinants of QOL of the African stroke CGs
This review found that older age of stroke CGs, longer duration of providing care for stroke survivors, high amount of caregiving burden and impairment of physical function in the African stroke survivor were the consistent factors associated with deterioration of CG QOL.
This means that older African stroke CGs experienced worse QOL. This finding is in line the reports of several studies outside Africa [5], [15], [35], [36]. Furthermore, two studies [18], [25] in this review reported that longer duration of providing care for the stroke survivor was associated with a deterioration of CG QOL but another study [17] reported an opposing finding. As the three studies above are of similar methodological quality, this review upholds the outcome of the first two studies. The implication of this finding is that lengthier duration of providing care to stroke survivors could have physical, social and psychological repercussions on informal CG’s health and wellbeing. In line with the outcome of this review, a study found that the duration of caregiving directly predicts CG QOL [37]. The long-term caregiving burden has also been shown to have adverse effects on family relationships emotional health and social activities [10].
Furthermore the reported influence that caregiving burden had on CG QOL could mean that increased caregiving burden will lead to poor CG QOL and vice versa. This finding corroborated those of other studies [9], [10] where it was reported that caring for a stroke patient could lead to increased caregiving burden; and this could affect CG QOL negatively [38]. In addition, studies have shown that providing care for stroke survivors was associated with reduction in CG QOL [2], [15], [39].
Additionally, this review found that impairment of physical function in the stroke survivor was associated with a reduction in CG QOL. There is possible interplay between high amounts of physical dependency producing increased caregiving strain and both leading to a reduction in CG QOL. According to a study [13], the functional status of stroke survivors was a determinant of CG QOL.
Burden of providing care for African stroke survivors
In this review, most African stroke CGs experienced severe caregiving strain [18], [19], [20], [22]. This finding is not unlikely considering that most of the CGs were reported to have spent several months and many daily hours providing care for stroke survivors. Providing informal care for stroke survivors for a very long period of time may lead to the loss of the CG’s job, a reduction in their earning, boredom and sometimes musculoskeletal pains; and this could predispose CGs to experience a reduction in their QOL.
Some African studies have found that educating CGs is one important way of reducing caregiving burden. Education was found to reduce the burden, increase CG QOL [32] and improve patients’ functional status and emotional state [40]. Educated CGs may have a more realistic understanding of a patient’s condition and clinical changes and its implication on their prognosis than those with low educational attainment. This could influence their ability to adequately cope with the stress of caregiving.
Determinants of caregiving burden
In this review, impairment of physical function in African stroke survivors and having a close relationship with the survivors were the factors that were consistently reported as being associated with increased levels of caregiving burden.
The finding that impaired physical function in stroke survivors produced increased caregiving burden is in line with the reports of several studies outside Africa in which the deterioration of physical functioning post stroke was linked to increased caregiving burden [6], [7], [8], [9], [41], [42].
Furthermore, the increased burden experienced by CGs who have close relationship with survivors could possibly result from emotional attachment. This could mean that stroke CGs are at risk of experiencing severe caregiving strain as a result of the level of intimacy or affection that exists between them and the patients. Studies have shown that the emotional status in either the patient or CG were determinants of both caregiving burden [6], [7], [8], [9], [41] and CG QOL [14], [15].
General observations
This review has observed that very few African studies reported the influence of daily caregiving hours on CGs’ burden. Further studies from Africa should endeavor to assess the association between daily caregiving hours, duration of providing care for stroke survivors (in weeks, months or years) and each of caregiving strain and CG QOL. Research reports outside Africa have shown that duration of caregiving post stroke [8], [11] and long caregiving hours [9], [11] were associated with increased caregiving burden.
In addition, very few of the reviewed studies reported the actual caregiving tasks performed by the stroke CG. The CG can provide both direct and indirect caregiving assistance to the survivors. Direct tasks could include helping them to use the toilet, bathing, dressing, feeding, grooming, lifting and helping them to do prescribed home-based exercise. The indirect task could include providing financial support, doing house chores such as cooking and washing of clothes and running errands to buy food, drugs or detergents, etc. Further studies from Africa should endeavor to provide the detailed description of the caregiving tasks in order to gauge the level of caregiving burden experienced by the CG and the possible influence that may have on CG QOL.
Furthermore, it is also pertinent to highlight that the level of household income of the stroke CG was not reported in most of the included studies. Although it is important to assess the CG’s financial status, that is, reporting the level of CG income is not enough. Studies should also assess the changes in the CG’s income by comparing income before and during the provision of care for stroke survivors in relation to the total cost of care as was done in a study [21]. This will clearly highlight the level of financial stress experienced by the CG. Studies outside Africa have shown that economic factors are determinants of caregiving burden [9] and CG QOL [16].
Finally, issues relating to employment status of CG are very critical to the CG’s ability to effectively discharge the caregiving role. Though very few studies in this review have reported the employment status of stroke CGs [18], [21], [25], the intending African researcher should also endeavor to report how providing care for stroke survivors leads to loss of the CG’s job or change in employment status as was done in a study [22] and find how these relate to caregiving burden or CG QOL. Studies around the world have shown that unemployment [8] and change in employment status [6] were related to increased caregiving burden.
Limitations
The majority of the studies in this review are cross-sectional surveys and the design does not permit inference of causality. Therefore a categorical statement stating that the identified factor has caused or produced an effect on caregiving burden or CG QOL could not be made. In addition, most of the studies that met the inclusion criteria in this review were from Nigeria and South Africa and this could limit the generalization of the research finding to the entire African continent probably due to the few databases used for the review.
Summary
The determinants of CG QOL were duration and burden of caregiving, the CG’s age and functional status of stroke survivors. Determinant of caregiving burden were functional status of stroke survivors and having intimate relationship with them.
Conclusion and recommendations
Most African stroke CGs experienced severe caregiving burden but had moderate QOL. The functional status of the stroke survivor is the consistent determinant of both caregiving burden and QOL of African stroke CGs. Young African CGs could be more suited for providing informal care for stroke survivors. Evidence-based rehabilitation techniques should be used to promote adequate and timely recovery of physical function post stroke in order to reduce caregiving burden and improve CG QOL. Education and training of CGs is needed in order to promote their ability to cope effectively with the burden of providing care for stroke survivors.
Conflict of interest: All the authors declared no conflict of interest.
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