[version 1; peer review: 2 approved with reservations]
No competing interests were disclosed.
Caring for stroke survivors is a long-term experience that could influence a person’s quality of life.
Caregivers play a central role in post-stroke patients’ care. Caregivers, which can be either family members or professional caregivers, are recommended to be involved in post-stroke patients care to improve the quality of patient management.
This was a qualitative study to contextually explore a range of experiences and perspectives, not to seek an agreement. We used a grounded theory approach
We recruited caregivers from the homecare clinic of Dr Sardjito General Hospital during January 2017 to June 2018, using purposive sampling. Inclusion criteria were: (
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.
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.
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.
All participants were given a brief explanation of the research and gave written informed consent in accordance with the Declaration of Helsinki.
We enrolled seven caregivers; all subjects were female with a median age of 36 years. All had home-based responsibilities and half of them had less than 5 years of caregiving experience. These caregivers managed five post-acute stroke patients. Patients’ median age was 72 years. Four (57.2%) of the caregivers had higher education while the other three (42.8%) had secondary education.
Five caregivers (71.4%) were full-time carers, while two others (28.6%) still had another job. Most of the caregivers (57,2%) were professional caregivers, while the other three (42.8%) were family members. One of the caregivers (14.2%) had been working as a caregiver for more than 10 years, two caregivers (28.6%) had been working for 5-10 years, and four others (57.2%) less than five years. The basic characteristics of the participants are depicted in
36 (27-67)
72 (66-85)
Male
1 (20%)
Female
7 (100%)
4 (80%)
Higher education
4 (57.2%)
2 (40%)
Secondary education
3 (42.8%)
3 (60%)
Caregiver
5 (71.4%)
Other
2 (28.6%)
Family
3 (42.8%)
Professional caregiver
4 (57.2%)
<5 years
4 (57.2%)
5-10 years
2 (28.6%)
>10 years
1 (14.2%)
After the discussion had been transcripted, 18 coding variables related to the roles of the caregiver for the post-stroke patient emerged from qualitative analysis. These 18 variables were reduced to six categories: communication, basic needs fulfillment, rehabilitation assistance, complication prevention and management, responsibility of patient’s condition, and maintenance of patient’s psychological condition. Furthermore, these six categories were reduced into three subthemes: communication, physical health, and patient’s psychology (
Communication
Basic needs
Rehabilitation
Complications
Responsibilities
Psychological
Knowledge
Family support
Resources of limitation
Lack of communication with medical personnel
Communication problems with patient
Treatment refusal
Fatigue (burnout)
A total of 28 codes which related to physical activity were identified which were then reduced into seven categories: knowledge, family support, limited resources and facilities, lack of communication with medical personnel, communication problem with patient, refusal to treatment, and fatigue (burnout). These seven categories are further reduced into five major subthemes: knowledge, family support, sub-optimal service, communication, as well as physical and mental limitation (
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.
An example of this role can be seen in the following quote:
“
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.
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. Caregivers also monitor the sleep pattern of their patients and help them to have good and adequate sleep.
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.
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.
This role can be seen in the following quotes:
“… y
“…
“…
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.
This can be elaborated with the quote from one of the interviewees below:
“...
Caregivers spend a considerable amount of time engaging with patients and contribute to maintaining patients’ psychological conditions.
“…
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.
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.
During the discussion, it was found that the family was not prepared for an emergency situation. This can delay early patient management. Meanwhile, the interviewee, as a caregiver, 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.
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.
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.
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.
The problems above can be seen in the following quote:
“
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.
Long working hours, quality of patient health, stroke severity, and level of patient dependency are factors associated with caregiver’s burnout.
"...
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.
Caregivers play an essential role in connecting patients with medical personnel and other family members, as well as maintaining the patient's physical and psychological condition. Meanwhile, caregivers face the problems of lack of support from patients' family, lack of knowledge, suboptimal service, lack of communication and caregivers’ burnout. The recognition of these roles and problems may help facilitate better management of post-stroke patients and increase quality of life for both patients and their caregivers.
Zenodo: Roles and problems of stroke caregivers: A qualitative study in Yogyakarta, Indonesia.
The project contains the following underlying data:
English Translated Transcript-Edited-Final.doc (an English translation of the focus group transcript).
Zenodo. Roles and problems of stroke caregivers: A qualitative study in Yogyakarta, Indonesia.
The project contains the following reporting checklist:
COREQ_checklist.pdf
Data are available under the terms of the
Muhrodji P: writing-original draft preparation, conceptualization, methodology, formal analysis; Wicaksana HAD: data curation, investigation; Satiti S: supervision, validation; Trisnantoro L: conceptualization, supervision, validation; Setyopranoto I: conceptualization, supervision, validation; Vidyanti AN: visualization, validation, writing-review & editing.
The authors would like to extend their gratitude to all the patients and caregivers who participated in this study. We would also thank all the staffs at Home Care Service in Dr. Sardjito General Hospital for their technical assistance.
Stroke is the leading cause of disability worldwide and has become a socioeconomic burden for our society. Caring for stroke survivors can play a crucial role in their continuous recovery in which caregiver is indispensable to these activities. The study mentioned roles and problems of post-stroke caregivers, which is meaningful in clinical practice.
Data collection needs to be very accurate and avoid interference because the data here are completely subjective information of the research object. For example, participant 6 said "
The study sample size is too small to draw general representative results. A very important problem related to caregiver is the lack of sympathy, sharing and love for the patients. They take care of patients after stroke often for the sake of salary and purely for responsibility. Is this problem encountered in this study? Of the caregiver's roles and problems, which one is the most important? Can the authors rank the importance of those roles and issues? The research objective only mentions the roles and problems of caregivers, so the conclusion should only focus on this point, not giving the opinion
I hope the authors can edit, supplement and add their own discussion to make the study even more complete. This is really an interesting study.
Is the work clearly and accurately presented and does it cite the current literature?
Yes
If applicable, is the statistical analysis and its interpretation appropriate?
Yes
Are all the source data underlying the results available to ensure full reproducibility?
Yes
Is the study design appropriate and is the work technically sound?
Yes
Are the conclusions drawn adequately supported by the results?
Partly
Are sufficient details of methods and analysis provided to allow replication by others?
Yes
Reviewer Expertise:
Stroke, Clinical Neurology especially Pain, Movement disorders.
I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.
Stroke is the leading cause of disability worldwide and has become a socioeconomic burden for our society. Caring for stroke survivors can play a crucial role in their continuous recovery in which caregiver is indispensable to these activities. The study mentioned roles and problems of post-stroke caregivers, which is meaningful in clinical practice.
Data collection needs to be very accurate and avoid interference because the data here are completely subjective information of the research object. For example, participant 6 said "
The study sample size is too small to draw general representative results. A very important problem related to caregiver is the lack of sympathy, sharing and love for the patients. They take care of patients after stroke often for the sake of salary and purely for responsibility. Is this problem encountered in this study? Of the caregiver's roles and problems, which one is the most important? Can the authors rank the importance of those roles and issues? The research objective only mentions the roles and problems of caregivers, so the conclusion should only focus on this point, not giving the opinion
Caregivers play
[hd1] [hd1] Revised conclusion as reviewer 2 suggested.
Satisfactory.
This is a novel attempt to document the roles and problems of stroke caregivers in Indonesia. The methodology is sound, but the manuscript would benefit from a more detailed description and discussion of the subject matter. The study setting needs to be introduced in greater detail as caregivers’ roles are very much affected by healthcare system differences across the world. Post stroke care is very challenging particularly for the LMIC, and especially for countries in the ASEAN region. Caregiver definitions in the Asian perspective also differ from western literature - and this should be highlighted in the write up. The authors may refer to this article (which I was involved with) by Ozdalifah O
Overall, this manuscript has potential to be accepted after major revision/refinement.
This section was too brief (2 paragraphs) and did not highlight the caregiver situation in Indonesia (i.e. what is the norm in post stroke care, and who constitutes as caregiver?). There is mention that caregivers are made up of family members and professional caregivers. Suggest to highlight and define what professional caregivers are (i.e. salaried professional nurse/ therapist/trained domestic helper etc.) and where were the caregivers located - is it in the patients’ own home or at a inpatient rehabilitation facility/ nursing home?
Focus group discussion was conducted to explore the roles and problems of caregiving (only ONE FGD was conducted, as mentioned in the article).
"Inclusion criteria were: (1) family or professional caregivers, who caregiving a post-stroke patient with any level of disability; and (2) providing care for ≥1 year."
The definition of professional caregivers is unclear. Do you mean professional caregivers as trained and/or were they salaried caregivers?
Why was the transcription not distributed to the caregivers for checking, verification? Is there a specific reason for this?
All subjects (caregivers) were female, median age of 36 years (?IQR), patients’ median age was 72 years (?IQR).
The areas where communication problems most likely to occur should be grouped, summarized and examples quoted accordingly. Suggest to include examples of communication between:
Caregiver and patient; Caregiver and medical personnel i.e. doctor; Therapists and doctor.
Similarly, the flow of this section can be improved by citing the quotes after each point. Please maintain a consistent format throughout the results section. Below are suggested rewrites:
Paragraph 2:
“For providing basic need fulfilment, caregivers help patients with disabilities in need of self-care and mobility such as feed, bathing, showering, toileting, dressing, grooming, walking and transferring…” “Caregivers also monitor the sleep pattern of their patients and help them to have good and adequate sleep.” “….yes, I standby for 24 hours. At night I sometimes sleep next to him, to supervise him…’(participant 6, ?family/professional caregiver) “During rehabilitation, caregivers play a role in assisting rehabilitation processes by giving additional physiotherapy services at home. This is in accordance with the rehabilitation recommendations that families and caregivers are involved in determining the goals and implementation of post-stroke rehabilitation.
8” “..besides visiting physiotherapists in a hospital or inviting them to do home care services, in the morning and afternoon we usually have short additional physiotherapy session, only several minutes, just to stretch some muscles….” (participant 17, family / professional caregiver). Caregivers’ problems: unappreciated and unconcerned family. “Moreover, the family did not give enough appreciation to the caregivers. “no respect from the family” (participant 2, ?professional/family caregiver)
Paragraph 3.
This section should summarise and provide recommendations on how to handle the caregiver issues. E.g. identifying relevant information which should be passed on to the identified caregiver: information regarding stroke; overall management/rehabilitation plans; communication strategies between caregiver-therapist-doctor; therapist-caregiver; professional caregiver-family; caregiver respite issues (teaching caregivers on how to handle or cope with burnout, for professional caregivers to be given scheduled respite hours/days).
Is the work clearly and accurately presented and does it cite the current literature?
Yes
If applicable, is the statistical analysis and its interpretation appropriate?
Not applicable
Are all the source data underlying the results available to ensure full reproducibility?
Yes
Is the study design appropriate and is the work technically sound?
Partly
Are the conclusions drawn adequately supported by the results?
Partly
Are sufficient details of methods and analysis provided to allow replication by others?
Yes
Reviewer Expertise:
Family Medicine, Health system Research, Community Stroke & Economic evaluations
I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.
We wish to thank you all for your constructive comments in this review. Your comments provided valuable insights to refine its contents. Because one of the objectives of this study is to widen our knowledge about caregivers’ roles and problems, especially in Indonesia, we would like to refine our paper. As you advise us to, more detail about this study setting and definitions about caregivers which enrolled in this study have been added.
This section was too brief (2 paragraphs) and did not highlight the caregiver situation in Indonesia (i.e. what is the norm in post stroke care, and who constitutes as caregiver?). There is mention that caregivers are made up of family members and professional caregivers. Suggest to highlight and define what professional caregivers are (i.e. salaried professional nurse/ therapist/trained domestic helper etc.) and where were the caregivers located - is it in the patients’ own home or at a inpatient rehabilitation facility/ nursing home?
Caregivers can be either formal or informal caregivers 6. Formal care is delivered by professionals, such as nurses, physiotherapists, or speech and occupational therapists. Informal caregivers can be paid or unpaid. Unpaid informal caregivers are family members, friends, or relatives, meanwhile paid informal ones are domestic helpers or trained individuals 6. Caregiving services can be provided in a home-based setting, a rehabilitation facility, or a nursing home 7.In Asian population, the responsibility of caring the patients mostly relies on family members, particularly the spouse or offspring who can provide caregiving in home-bound setting 8. [ANV1]
Focus group discussion was conducted to explore the roles and problems of caregiving (only ONE FGD was conducted, as mentioned in the article).
"Inclusion criteria were: (1) family or professional caregivers, who caregiving a post-stroke patient with any level of disability; and (2) providing care for ≥1 year."
The definition of professional caregivers is unclear. Do you mean professional caregivers as trained and/or were they salaried caregivers?
Inclusion criteria were: (1) family caregivers or a domestic helper[hd2] ,.
Why was the transcription not distributed to the caregivers for checking, verification? Is there a specific reason for this?
All subjects (caregivers) were female, median age of 36 years (?IQR), patients’ median age was 72 years (?IQR).
We enrolled seven caregivers; all subjects were female with a median age of 36 years (interquartile range [IQR] was 17)[ANV3] . All had home-based responsibilities and half of them had less than 5 years of caregiving experience. These caregivers managed five post-acute stroke patients. Patients’ median age was 72 years (IQR was 14)[ANV4] . Four (57.2%) of the caregivers had higher education while the other three (42.8%) had secondary education.
The areas where communication problems most likely to occur should be grouped, summarized and examples quoted accordingly. Suggest to include examples of communication between:
Caregiver and patient; Caregiver and medical personnel i.e. doctor; Therapists and doctor.
Despite of this, we have re-organized the communication problems and added one more quote to describe related to communication problem between caregivers and the patients:
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 was
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 burden
This was an example which expressing this problem:
“… after her second stroke she really was deteriorated, we didn’t know whether she still recognized us or not because there were no response at all from her, she was only staring but it’s a blank stare…”[hd6]
Similarly, the flow of this section can be improved by citing the quotes after each point. Please maintain a consistent format throughout the results section. Below are suggested rewrites:
Paragraph 2:
“For providing basic need fulfilment, caregivers help patients with disabilities in need of self-care and mobility such as feed, bathing, showering, toileting, dressing, grooming, walking and transferring…” “Caregivers also monitor the sleep pattern of their patients and help them to have good and adequate sleep.” “….yes, I standby for 24 hours. At night I sometimes sleep next to him, to supervise him…’(participant 6, ?family/professional caregiver) “During rehabilitation, caregivers play a role in assisting rehabilitation processes by giving additional physiotherapy services at home. This is in accordance with the rehabilitation recommendations that families and caregivers are involved in determining the goals and implementation of post-stroke rehabilitation.
8” “..besides visiting physiotherapists in a hospital or inviting them to do home care services, in the morning and afternoon we usually have short additional physiotherapy session, only several minutes, just to stretch some muscles….” (participant 17, family / professional caregiver).
Paragraph 3.
Caregivers as the person
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[ANV8] also monitor the sleep pattern of the
We can see this role in this quote:
“…y
During rehabilitation, caregivers also play a role in assisting rehabilitation process
Role of caregiver in helping rehabilitation can be seen in this quote:
“…
Furthermore, caregiver
This[ANV11] role can be seen in the following quote:
“…
Based on the above discussion, it can be observed that maintaining a
This can be elaborated with the quote from one of the interviewees below:
"...
Caregivers’ problems: unappreciated and unconcerned family. “Moreover, the family did not give enough appreciation to the caregivers. “no respect from the family” (participant 2, ?professional/family caregiver)
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[ANV12] , 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.
"
This section should summarize and provide recommendations on how to handle the caregiver issues. E.g. identifying relevant information which should be passed on to the identified caregiver: information regarding stroke; overall management/rehabilitation plans; communication strategies between caregiver-therapist-doctor; therapist-caregiver; professional caregiver-family; caregiver respite issues (teaching caregivers on how to handle or cope with burnout, for professional caregivers to be given scheduled respite hours/days).
Further research to study the effects of these findings on the quality of life of both patient and their caregiver, as well as how to handle the caregiver issues should be investigated.[hd16]
[ANV1] As reviewer 1 suggested, we add more explanation about caregivers and the setting/location of care provided
[hd2] As reviewer 1 asked, we clarify the type of caregivers recruited
[ANV3] As reviewer 1 suggested, we add the IQR
[ANV4] As reviewer 1 suggested, we add the IQR
[hd5] The quote has been organized and moved right after the first paragraph
[hd6] As reviewer 1 suggested, we add one more quote related to communication problem between caregivers and the patients
[hd7] We add one more quote to provide more example related to the role of caregivers for providing basic needs
[ANV8] As reviewer 1 suggested, we have moved citing the quote after each point to improve the flow of writing
[hd9] As reviewer 1 suggested, we have moved citing the quote after each point to improve the flow of writing
[hd10] As reviewer 1 suggested, we have moved citing the quote after each point to improve the flow of writing
[ANV11] As reviewer 1 suggested, we have moved citing the quote after each point to improve the flow of writing
[ANV12] Additional explanation related to the status of caregivers as domestic helpers
[ANV13] Additional explanation related to the status of caregivers as domestic helpers
[ANV14] Additional explanation related to the status of caregivers as domestic helpers
[ANV15] Additional explanation related to the status of caregivers as domestic helpers
[hd16] Usulan revisi kesimpulan sesuai dengan saran reviewer 2