ABSTRACT

Background

Management plans for stroke survivors has traditionally neglected their informal carers- a group very likely burdened by the dependence of the stroke survivors. The need to evaluate their level of burden had been emphasised in some other populations but not in Nigeria.

Objectives

This study aimed to determine the level of burden among carers of stroke survivors in South-Eastern Nigeria and find out the factors associated with it.

Methods

This study was a survey of carers of stroke survivors in two purposively selected tertiary healthcare institutions in South-Eastern Nigeria recruited by consecutive non-probability sampling technique. The Carer Strain Index (CSI) – a 13-item instrument evaluating carers’ burden was administered on 91 volunteering carers who also gave information on age and gender of carer and survivor, poststroke period, relationship and living status with patients.

Results

Most carers were significantly burdened. Female carers and carers of female survivors were more significantly burdened than male carers and those caring for male survivors respectively and so were immediate family members more than others (p <.05). Carers burden significantly correlates with survivors' and carers' gender and relationship with survivors (p<. 05). Conclusions

A high level of burden exists among carers of stroke survivors. Clinicians should assess each carer’s burden and address carer’s need for a more effective stroke management outcome.

Keywords: Carers/caregivers, Burden, Stroke , South-Eastern Nigeria

INTRODUCTION

Stroke has a major impact on a person’s life and can lead to long-term disability necessitating long-term care (4) The wide range of disabilities faced by stroke survivors predisposes them to variable dependence on their carers in order to lead a more normal life leading to stroke being considered as a family illness. Services for stroke however fail to recognise the need of carers, and this may lead to significant deterioration in carers’ health and quality of life (QoL) (5). The sudden loss of disability following stroke, stresses the family of stroke survivors (4). Thirty percent of informal carers in James’ (6) study showed marked stress and more carers had more problems with emotional reactions, sleep and social isolation than expected. Another study (1) reported adverse effects on carers’ emotional health (in the form of anxiety, depression, fear, frustration, resentment, impatient and guilt), social activities, leisure time and family relationship (as a result of tension misunderstanding or feeling of neglect among family members because of physical and emotional demands of the patients), and that emotional distress were more in carers of patients with dementia and/or abnormal behaviour. The physical aspect of caregiving was shown to be associated with symptoms such as osteoarthritis, and to interfere with manifestation of other conditions such as hypertension or cardiac disease (2).

Anderson (1) had reported some children who support disabled parents, and families whose main wage-earner had experienced stroke to be faced with financial and work-related problems. Berg et al (2) citing some authors, said that the level of depression among caregivers may be associated with several patient- and caregiver-related variables whose level of influence on the level of depression among caregivers changes with post-stroke duration. They also opined that at the acute stage, caregivers’ level of depression is predicted by patients’ age and sex, stroke severity and the patients’ level of depression, while caregivers’ depression at the acute stage is the best predictor of caregivers’ depression at later stages.

Carers’ well-being is an important issue to consider in stroke rehabilitation. Stroke rehabilitation has concentrated successfully on patient-focused interventions to reduce severe disability and institutionalization, which has resulted in increasing the number of disabled patients being managed at home (16) which means more work for caregivers. The emphasis in stroke rehabilitation needs to shift from a patient-focused approach to a combined patient- and caregiver-focused approach because these individuals are central in preserving rehabilitation gains and the long-term well-being of stroke survivors (9). The researches on the impact of stroke on informal carers have mainly used non-standardized instruments (8) and there seems to be no published one from Nigeria, a country where other factors might complicate the burden of caring.

This study measured the level of burden of informal carers of stroke survivors in South-Eastern Nigeria using the Carers’ Strain Index (CSI) – a 13-item questionnaire with 5 domains which consists of employment, financial, physical, social and time domains. It has been used by many researchers for estimating carers’ burden and was found to have high reliability and validity (17). It was reported by Van Exel et al (18) to be a valid instrument for assessment of caregivers’ burden. The study further assessed patient and caregiver- related variables to see their association with caregivers’ burden

MATERIALS AND METHOD

The study was a survey of informal caregivers of stroke survivors resident in the South-Eastern part of Nigeria. A non-probability sampling technique was employed to recruit all the caregivers of stroke survivors found at the Physiotherapy Out-patient departments and the Neurology Clinics of the selected hospitals who could understand English Language and were willing to participate in the study. Information on caregiver and survivor’s age and gender, relationship and living status (whether they live together or not) was obtained via oral interview. The CSI questionnaires were administered directly to the participating caregivers some distance away from the stroke survivors to avoid influencing the caregivers’ responses.

The Caregiver Strain Index (CSI) was used for estimating the level of burden of caring for stroke survivors on the caregivers. It is a 13-question tool that measures strain related to care provision. There is at least one item for each of the following major domains: Employment, Financial, Physical, Social and Time. Positive responses to seven or more items on the index indicate a greater level of strain (17). Sullivan (17) reported that the CSI’s construct validity is supported by correlations with the physical and emotional health of the caregiver and with the subjective views of the care giving situation and that the CSI has a high internal consistency (alpha=0.86).

Descriptive statistics of frequency counts and percentages (for gender of carer and stroke survivor and the relationships of carers to survivors), mean and standard deviation (for age of carers and survivors, the poststroke period and the CSI scores) and inferential statistics of Spearman rank-order correlation, Mann-Whitney and Kruskal-Wallis non parametric tests (for testing the relationship and the differences between the variables respectively) were used to analyse the obtained data. Level of significance was set at 0.05.

RESULTS

Ninety-one stroke survivors and ninety-one caregivers participated in the study. Forty-nine (53.8%) stroke survivors were males while fifty-five (60.4%) caregivers were female. Almost four-fifth (78.0%) of the caregivers was living with the stroke survivors. Sixty-four (70.3%) caregivers were direct family members (spouse, child or sibling) of the stroke survivors. Seventy-five (82.4%) caregivers had CSI scores of 7 and above which reveals significant burden (Table1). The average score of the caregivers on CSI was 9.099 ± 2.948 (Table 2). The mean age of the stroke survivors was 60.538 ± 12.727 years while the mean age of the caregivers was 34.626 ± 13.977 (Table 2).

Table 3 shows the mean CSI score of the male to be significantly lesser to that of female caregivers while the CSI 2 scores straightforwardly revealed that more females were significantly burdened than males. Half of the participating caregivers were children of the stroke survivors while about 15 percent were survivors’ spouses (Table 4). There was a significant difference in the level of burden experienced by caregivers in the different relationship sub-groups (Table 5).

The level of caregivers burden (CSI 2) had a significant correlation with the gender of survivors (r =0.310), age of caregivers (r =0.288), gender of carers (p<0.05, r =0.286), post-stroke period (r =-0.284) and with the relationship of the caregivers with the stroke survivors (r =0.344) (Table 6). DISCUSSION

Caregivers in this study were majorly females (60.4%), reflecting a similar gender spread with other studies on caregivers’ burden (9, 10, 12, 13, 14). In Nigeria as in some other Africa and world cultures, domestic works and caregiving roles are primarily considered as women’s work. The caregivers in this study were however younger than those studied by some other researchers (3, 9, 10). A greater percentage of the caregivers in those other studies were spouses of the stroke survivors whereas in this study, the children and the grandchildren of the stroke survivors constituted 61.5% of the caregivers. The greater percentage of children and grandchildren caregivers was not unexpected. It is a cultural norm in Nigeria that an individual’s descendants would take care of him/her as he/she ages or during periods of ill-health. Gender distribution of stroke survivors in this study was nearly equal portraying a common trend with some other studies (3, 12) in which 51% of the patients were males. This seems to reflect the distribution ratio of the incidence of stroke between males and females.

Most of the informal caregivers in our study (82.4%) experienced a considerable burden which was in line with report from other studies (10, 12, 13) though the level of carers burden in this study was slightly higher than what obtained in these other studies. Some socio-economic factors peculiar to Nigeria and not studied in this work might have further complicated the caregivers’ burden. In this study, caregivers’ level of burden was found to be associated to some factors (gender of patients and caregivers and relationship of the caregivers with the patients).This is in line with the reports of some other researchers (3, 7, 10, 12, 13, 15). McCullagh et al (9) could however not find significant correlations between caregivers’ burden and the patients’ gender, caregivers’ age or relationship of the caregiver to the patient.

When CSI scores were not ranked by the presence or absence of significant burden, it significantly correlated positively with the age of carer and inversely with survivor’s poststroke period. The significant positive correlation between the age of the caregiver and the level of caregivers’ burden was in contrast to the findings by McCullagh et al (9). Even when the CSI scores were ranked, the correlation between these variables at p= 0.056 was still close to being significant This correlation or near correlation might be as a result of the fact that a good number (50%) of the caregivers involved in the McCullagh et al’s study were receiving training on caregiving. This might have boosted their caregiving efficacy and confidence thus masking the effect of their age on their level of burden. Ageing process has a negative effect on the physical aspect of health which in turn reduces the quality of life of elderly caregivers’. The non-significant correlation between the age of stroke survivors and carers’ burden was supported by findings in an earlier work (9).

The negative correlation between survivors’ post-stroke period and caregivers’ burden (CSI score) is both supported and contrasted by other findings (11, 13). This significant decrease in caregiver burden with post-stroke duration might be as a result of gradual improvement in the patients’ functional status or as a result of better adjustment of caregivers to caregiving role, factors reported as reducing caregivers’ burden (13, 14). These factors were not directly studied in this work but can be reasonably assumed.

Male caregivers in this study just like in others (10, 12) had significantly lower burden than females. The Ibos, who dwell in South-Eastern part of Nigeria, expect males to be stronger and better able to contain their burden than females. It might thus either be that the male caregivers were better able to contain their burden or that they felt intimidated or ashamed to express their burden as a result of socio-cultural reasons. Our study findings, that caring for female stroke survivors constituted significantly higher burden than caring for males, contradicted another (12). Societal norms in this environment expect females to have a higher level of physical and emotional dependence than males and the female survivors might be relating to their carers in line with this stereotype.
This study revealed that carers of stroke survivors in South-Eastern Nigeria are significantly burdened particularly female caregivers and those caring for female survivors. Clinicians managing stroke should go beyond managing the individuals with stroke, to assessing the level of burden in each caregiver and finding strategies to help these individuals minimize or cope with the burden of caring. Special attention should be paid to the more vulnerable groups. This study should be replicated in other Nigerian populations to see if cultural differences play any part in the perception of burden in these carers.

Table 1: Frequency and percentage table for gender of carers and patients, living status, carers’ relationship with the patient, CSI 2 scores

– IFM (immediate family members) →spouse, child and sibling Others→ In-laws, grandchildren, cousins, nephew, niece, friend and driver.
– CSI 2 refers to ranked CSI score indicating presence (=> 7) or absence (<) of significant burden

Table 2: Mean age and poststroke duration for stroke survivors and mean age and CSI score of carers

Table 3: Mann Whitney test comparing level of burden (CSI 2 scores) of caregivers based on the gender of the caregivers and the stroke survivors

Table 4: Frequency and percentage distribution of the relationship with survivor among carers

Others→ Friend and driver

Table 5: Kruskal-Wallis test comparing differences of CSI 2 (burden) across different relationship sub-groups

*Significant at p<0.05

Table 6: Spearman rank order correlation of CSI and CSI 2 scores with some variables relating to patients and caregivers

* indicates significance at p< 0.05