Burden of Stroke Caregivers: Evidence from a Qualitative Study in Sarawak, Malaysia

Background: Stroke survivors experience long-term physical, psychosocial and cognitive impairment that are formidable challenges to caregivers because caring for stroke survivors needs explicit knowledge and caregivers have to endure the stressfulness as a result of caring. In addition, little is known about perceived benefits of the stroke care giving experience. Objectives: This study was aimed to determine the caregivers’ burden and challenges as reported by caregivers of stroke survivors. Materials and Methods: This was a cross-sectional study involving 18 stroke caregivers. The data were collected from November 2015 to June 2016 at a conveniently selected community rehabilitation centre in Kuching, Sarawak. Results: The qualitative data analysis revealed that the burden was aggravated by financial problems, multiple responsibilities hold by the caregivers, behavioural changes of the stroke survivors and lack of social support during care giving. Conclusion: This study highlighted the experiences by the caregivers in caring for the stroke survivors that focused on the different needs of the caregivers. Understanding these experiences may help the service providers to provide better support and resources for caregivers in caring for stroke survivors.


Introduction
The operational definition of stroke was a rapidly developing sign of focal disturbance of cerebral function lasting more than 24 hours with no apparent non-vascular cause 1 . Stroke is the third most common cause of death in developed countries, after coronary heart diseases and cancers. Three million women and 2.5 million men die from stroke every year worldwide 2 . Annually, each 15 million people worldwide suffer from stroke. Out of 15 million people, 5 million die and another 5 million are left permanently disabled causing a burden on family and community 2 . The incidence and prevalence rates of stroke are decreasing in developed countries, but an opposite trend is taking place in the Asia Pacific, where an increasing number of patients are being diagnosed with acute stroke 3 . Some of the reasons that the incidence of stroke is declining in many developed countries are due to better control of high blood pressure and reduced levels of smoking. However, the number of strokes continues to increase in Asia Pacific because of the ageing population 2 . Nevertheless, there has been no comprehensive database on the incidence of stroke in Malaysia 4 . Some stroke survivors need caregivers to take care of them. After they have been discharged from hospital, they will be taken care by their own family members or other people who agree to take care of stroke survivors for a fee. A caregiver is defined as a person who lives with the patient and is most closely involved in taking care of the patients at home 5 . The caregiver is vulnerable to stress and strain such as sleep disturbance, bodily ache, financial problem and lack of time for social activities as a result of taking care of a survivor in a longer duration. The needs of a stroke survivors vary from physical activities such as walking, transfer from bed to chair, communication with family members or friends, feeding, changing clothes, emotional changes, employment issue such as loss of employment and hospital treatment payment 6 . Burden of care of stroke survivors impacts the physical as well as psychological well-being of the caregivers adversely 7 . The burden of stroke in Asia is serious because of the increase in the aging population and the long term care need of the stroke survivors 3 . Partners of stroke survivors reported of experiencing care giving burden such as feelings of holding heavy responsibility, uncertainty about survivors' care needs, constant worries, limitation in social life, and dependency of survivors on their carer 8 . Stroke caregivers' mental health and the care giving duration as well as effort required by the caregivers are significant determinants of caregiver burden 9 .

Objectives
The main objective of the study was to explore the experiences of caregivers in caring for the stroke survivors.

Study settings and characteristics
This was a cross-sectional qualitative study with a view to explore the patterns of burdens and its disengagement experienced by caregivers of stroke survivors. The data was collected in the month of November 2015 until June 2016 at a conveniently selected community rehabilitation centre in Kuching, Sarawak. The study population included 18 caregivers of stroke survivors and recruitment of respondents were stopped when the data reach saturation. Healthy caregivers aged 18 years and above, staying with patients and involved with direct care of the survivors were thus selected in this study. Interviews were done when the caregivers came to the rehabilitation centre with the patients on followup or at their home on request. Finally, 6 caregivers were interviewed at the rehabilitation centre and 12 caregivers were at their homes.

Data collection tools and analysis
The semi-structured interviews were conducted using a guideline to generate of dialogue discussing the difficulties and feelings experienced by caregivers during care giving. Question guidelines was developed based on Caregivers Strain Index that consists of five major domains which are employment, financial, social, time and physical. A thematic analysis was done using the procedure described by Braun and Clarke 10 . In the analytic process, the researchers transcribe the data first, reading and rereading the data, noting down initial ideas, followed by coding interesting features of the data into a systematic fashion, and collating data relevant to each code. After collating codes, the potential theme emerged, thus generating the thematic map of analysis. Ongoing analysis was to refine and specify each theme. Finally, the analysis tell the overall story, generate clear definitions and names for each theme.

Ethical issues
Ethical approval for this study was obtained from the Ethics Committee of Universiti Malaysia Sarawak (UNIMAS). Voluntary participation was sought, and participants were assured about the data confidentiality. They were briefed about the aims of the study and a written informed consent was obtained before each interview. Table 1 illustrate the socio-demographic characteristics of the caregivers. The mean (SD) age of the caregivers was 50.6 (14.3) years the minimum age was 25 years and the maximum age was 73 years. Out of 18 caregivers, 94.4% were female and the rest were male. Highest percentage had secondary level of education (38.9%) followed by bachelor's degree (16.7%). However, 16.7% had no formal education. More than two-fifths (44.4%) were currently employed and 38.9% were unemployed. Among them 11.1% have retired from a job, highest percentage of the caregivers were spouse (55.6%) followed by children (either son or daughter) comprising 22.3%. After data analysis, five categories of themes emerged. These include physical, social, financial, employment and time. The following sections narrated the caregiver's strains, need and psychological stress. (Sarah, 43 years) Caring for stroke survivors are time demanding and their caregivers spend most of their time performing the caring task and have less time for themselves. In summary, the results demonstrated that the caregivers were facing a lot of physical, social and financial challenges in managing the stroke survivors.

Discussion
In this explorative study, the researchers tried to map the caregivers need and problems encountered during care giving for the stroke survivors. Care giving is a complex process and it depends on successful residential integration 11 . The initial part of management is critical, and the responsibilities are mainly handled by the health professional team. However, to ensure the quality of life for the stroke survivor, it depend on the caring capabilities in the home setting by caregivers. These are often ignored by health care providers. It is important that the rehabilitation team assess the situation of caregivers and assists them to manage their problems and to identify coping strategies and skills and build on successes. Stroke survivors and their caregivers may need help in adjusting their situation after the stroke event. They can share their challenges and concerns with the rehabilitation team as well as obtain help, support and cooperation to build strength and coping skills with the challenges in their life. This study found a higher proportion of caregivers experiencing a psychological strain with sleep disturbances. Previous studies indicated that care giving in the home setting faces more strain than the rehabilitation centrebased caregiving 12-14 . Wasserman et al. 15 opined that no or inadequate services from rehabilitation centre or inadequate services from home setting might cause the high prevalence of strain. The situation is worsened if the stroke affected person regains only partial independence. Enormous stresses and strains can be placed on a partner, which may cause not only sleep disturbance, but also lead to depression and anxiety. It is impossible for one person to do all the tasks of both partners. Stroke survivors can be demanding, and it is often difficult to carry on with every day activities. This hampers the maintaining of social contacts and outside interests. Although, the present study did not attempt to estimate the direct or indirect cost of stroke management both in rehabilitation and home setting, the respondents reported that they were facing tremendous economic hardship, in terms of education of their children, food, medicine and transport. Joo (2014) found that the indirect costs of stroke varied from 3% to 71% of the total cost of that event 16 . The study also reported that indirect cost depended on the length of types of stroke, and cost components and duration of disease. The indirect cost will increase even further with the aging population and improving survival rate of stroke patients. So, most of the indirect cost totally depends on the caregivers or from the stroke survivors. This leads to enormous economic pressure to the caregiver's family.

Limitations
Although the study had tremendous contribution to public health and social science, it is not free from limitations. The caregivers in this study were recruited from one rehabilitation centre and the sample size was limited to 18 in number. The research focused only on burdens met by stroke caregivers in Sarawak. Thus, the results may not be generalised to other settings or caregiver's population of Malaysia. Another limitation was that the caregivers were asked to recall their experiences of only stroke survivors, which may be influenced by recall bias. Furthermore, the caregivers were interviewed only once, and they were not followed for elucidation of differences in experiences. We suggest that prospective studies be conducted, using both qualitative and quantitative research designs, to understand changes of caring experience across different stages to get the deeper understanding of caregiving phenomena.

Conclusions
This study focused on the caring experiences of caregivers of stroke survivors with different complications. Caregivers suffer from economic hardship in terms of education of their children, transport and nutritional needs for the family. However, with fruitful use of various resources, caregivers could develop the skills and techniques required to deal with the complexities of stroke. Though the caregiving process is a challenging task, in most cases, a positive and forward-looking attitude helped caregivers bridge their difficulties and continue the care. Technical support from health professionals and financial support from government is warranted. Physical and emotional support of caregiver's family members, professional, social activists is fundamental in meeting the needs of caregivers and patients alike.