Roles and Problems of Stroke Caregivers: A Qualitative Study in Yogyakarta, Indonesia

Study design

This was a qualitative study to contextually explore a range of experiences and perspectives, not to seek an agreement. We used a grounded theory approach⁹ to identify initial themes and categories which describe the roles and problems of caregivers for post-stroke patients.

Sample and recruitment

We recruited caregivers from the homecare clinic of Dr Sardjito General Hospital during January 2017 to June 2018, using purposive sampling. Inclusion criteria were: (1) family caregivers or a domestic helper, who caregiving a post-stroke patient with any level of disability; and (2) providing care for ≥1 year. We sent a checklist of the eligible criteria to the homecare clinic. Staff at the homecare clinic subsequently provided us with potential participants’ phone numbers with their consent. We contacted the potential participants through telephone calls to invite them to the study. A focus group discussion was scheduled after receiving confirmation of their participation. A total of seven caregivers were included in this study. Two caregivers refused to participate in the study due to personal reasons.

Data collection

Data were collected by conducting a focus group discussion (FGD) on 21 July 2019. The research team developed an interview guide which had been further transformed into several questions to be addressed in the discussion. The discussion was led by a moderator (the second author HDAW), assisted by a note-taker and an assistant who documented the discussion. The first author (PM, a senior neurologist) was also present during the discussion to supervise and guarantee that the discussion went effortlessly. The moderator (interviewer) was a male senior neurology resident who had basic training skills of FGD. He did not have any relationships with the participants and the participants knew him as a neurology resident who had interest in research related to stroke caregivers.

Participants’ demographic data were collected at the beginning of the discussion, along with that of their care recipients’ (post-stroke patients). These data included age, sex, education level, main occupation, relationship with post-stroke patient, and years of caregiving. The discussion began with a broad central question regarding the caregivers’ knowledge about stroke followed by probing and further questions related to roles and problems of caregivers. The discussion was held in a quiet and comfortable closed room (workplace) for approximately 120 minutes. It was carried out once and there were no repeat sessions.

Data analysis

All discussions were tape-recorded and transcribed verbatim in Bahasa Indonesia. Data analysis began immediately after the discussion to identify ideas for generating categories. The semantic contents were separated and coded. Following a grounded theory approach, constant comparative analysis was used to compare data and open coding determined core categories. Identical codes were further grouped into categories to identify the main themes and subcategories.³ QDA Miner Lite version 2.0.6 software was used to analyse the transcript and assist the coding process. The coding was further reviewed by two investigators (PM and HDAW) to establish that codes were data-driven. Any differences were discussed until consensus was reached. The full transcript was not returned to participants for comment.

Ethical consideration

The study protocol received ethical approval from the Medical and Health Research Ethics Committee (Ethical approval reference number: KE/FK/0800/EC/2020) at the Faculty of Medicine, Public Health, and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia.

Consent

All participants were given a brief explanation of the research and gave written informed consent in accordance with the Declaration of Helsinki.

Roles of caregiver: communication

Caregivers act as a communicator between the patient or family and medical personnel, or the patients and their family. Caregivers connect communication between the patient and people involved in the patient’s management including doctors, psychologists, nurses, and therapists. This role serves as an important aspect of patient care, and also be integrated as a guideline for adult stroke rehabilitation and recovery.^7,10 Therefore, good communication skills are necessary for caregivers.¹¹

An example of this role can be seen in the following quote:

Roles of caregiver: maintaining patients’ health

Caregivers as the people who daily assist patients’ activities, hold responsibility for patients’ health care. Caregivers provide basic needs fulfillment and rehabilitation processes, as well as prevention and management of complications.^7,11

For providing basic need fulfillment, caregivers help patients with disabilities in need of self-care and mobility such as feeding, bathing or showering, toileting, dressing, grooming, walking, and transferring.

This quote below is an example from participant about this role:

Caregivers also monitor the sleep pattern of their patients and help them to have good and adequate sleep.^11,12

We can see an example of this role in this quote:

During rehabilitation, caregivers also play a role in assiting rehabilitation processes by giving additional physiotherapy services at home. This is in accordance with the rehabilitation recommendations which state that families and caregivers are involved in determining the goals and implementation of post-stroke patient rehabilitation.¹⁰

Role of caregiver in helping rehabilitation can be seen in this quote:

Furthermore, caregivers play essential roles in preventing and managing complications that may eventually develop. This role is in accordance with a previous study which found that caregivers can help reduce the incidence of post-stroke complications.¹³ However, the study above used a formal training program for caregivers which was too impractical to be implemented in this study. The importance of training and education for caregivers is also supported by other studies that showed a reduction in complications through providing education programs to caregivers.¹⁴

This role can be seen in the following quote:

Based on the above discussion, it can be observed that maintaining the good health of post-stroke patients is the responsibility of the caregiver. This is in accordance with prior studies which stated that there are major changes in the responsibilities of families caring for post-acute stroke patients.^15–17

This can be elaborated with the quote from one of the interviewees below:

Roles of caregivers: maintaining patients’ psychological condition

Caregivers spend a considerable amount of time engaging with patients and contribute to maintaining patients’ psychological conditions.¹⁴ Based on the discussion, it was found that the caregivers help in maintaining patients’ psychological condition by telling interesting stories, joking, or doing recreational activities. This can be seen in the following statement:

The role of caregivers in maintaining patients’ psychological health conditions is important in preventing depression in post-acute stroke patients. Depression is one of the most common complications of stroke.¹⁸ Caregivers also have a great influence on the development of the patient's psychological condition and the prognosis.¹⁹

Caregivers’ problems: lack of knowledge

After conducting the FGD, it was found that one of the problems in post-stroke patient care is caregivers’ lack of knowledge. Caregiver illiteracy on stroke was clearly seen during FGD. When the caregivers were asked ‘what is stroke’, one of them answered:

The other caregivers stated that they need to be equipped with some knowledge because for example, sometimes caregivers are involved in decision-making. However, they feel that they do not have sufficient knowledge to make a decision. This results in decision-making delay. The caregivers also feel that knowledge about medication and treatment is important. However, the information given to them by medical personnels is also limited. To overcome their lack of knowledge about stroke, they searched the information from other sources. However, the information obtained is said to be inaccurate, as in the statement below:

Lack of caregivers’ knowledge can be a weak point in post-stroke patients care. There have been many studies which stated that one of the important modalities that a caregiver must have is knowledge.^7,20,21 In addition, it is recommended that the process of decision-making and treatment planning should involve both the family and the caregiver.^7,22

Caregivers’ problems: underappreciated and unconcerned family

During the discussion, it was found that the family was not prepared for an emergency situation. This can delay early patient management. Meanwhile, some interviewees, domestic helpers being as informal caregivers, did not dare to take action before instruction had been given or a decision was made by the family, even though the patient was in an emergency condition. This occurred because the caregiver was afraid of being blamed, which can be seen in the following statement:

Another caregiver said that she had been scolded when she encountered similar situation, like in the phrase below:

Moreover, the family did not give enough appreciation to the caregivers.

Lack of support by the family becomes a burden for the caregiver. Furthermore, the lack of family support in post-stroke patients care may reduce the quality of patient care. Family support has an important role in the patients’ quality of life.²³

Caregivers’ problems: suboptimal service

The main obstacle felt by the family is the lack of personnel or facilities offered by the home care unit. The interviewees stated that due to limited physiotherapy facilities and resources, the interviewees sought additional personnel from other resources. In addition, there were also some difficulties in getting the prescribed medication.

We also found that results of laboratory test delivered to family or caregiver were taking too much time. There was also a case of mistaken identity of a test result which was commented on by saying:

They also expressed problems in unthorough administration. These experiences can be seen in the following quotes:

Limited resources become a challenge itself because it raises the gap between the standard of care and real-world capacity of service, ranging from prevention to post-acute care.²⁴

Caregivers’ problems: lack of communication

Perceptions that were obtained from the caregivers were that there was a lack of communication between medical personnel causing uncollaborative patient management. They stated that this caused the patient's treatment to be time-consuming. Poor communication is associated with less effective services.⁷

The problems above can be seen in the following quote:

Apart from communication problems with medical personnel, we also found that communication problems with patients became a burden for the caregiver. This is especially experienced with patients who have communication disorders. In long-term care setting, caregivers’ anxiety rates have decreased. Nonetheless, caregivers’ depression rates and burdens are still high.²⁵

This was an example which expressing this problem:

Caregivers’ problems: physical limitations and burnout

Based on the FGD, one of the obstacles in post-stroke patients care was patients’ refusal of treatment. The caregivers thought the patient's morale, pain, and burnout were the causes of the refusal. Apart from the patient side, caregivers also face physical and mental burnout.

Depression is one of the complications that often occurs in patients with a history of stroke.¹⁸ Periodic examinations or screening related to depression in the patients and their caregivers by their doctor is recommended.⁷ In addition, the deteriorating psychological condition of the patient is a heavy burden for the caregiver.²⁰ Anxiety and depression while caring the stroke patients are related to the caregivers’ burden.²⁶

Long working hours, quality of patient health, stroke severity, and level of patient dependency are factors associated with caregiver’s burnout.²⁷ Other studies have shown that a high need for care is also a factor that influences caregiver’s burnout.²⁸ Moreover, the emotional condition of the patient also affects caregiver’s burnout.²⁹ The description of this problem can be seen in the following quote:

This study has several limitations. First, the caregivers in this study were recruited from one medical center, and the sample size was small. Second, our findings might not be generalized to non-Asian countries as our participants were recruited in Indonesia which has collectivist backgrounds.³⁰ Third, we did not distribute the transcription to the caregivers for verification, thus it may lead to misinterpretation. Finally, all the caregivers in our study were female which may cause differences in caregiving experiences and lead to different roles and problems. Future study can be conducted with male caregivers to capture holistic understanding of caregivers’ role and problems.

Underlying data

Zenodo: Roles and problems of stroke caregivers: A qualitative study in Yogyakarta, Indonesia. https://doi.org/10.5281/zenodo.4716264.³¹

The project contains the following underlying data: