Background: Caregivers play a central role in post-stroke patients' care. However,the role of and problems managed by caregivers have not been widely studied, particularly in Indonesia. This study aims to explore the roles and problems of caregivers in post- stroke patients’ care.Method: This was a qualitative study. Seven caregivers of post-stroke patients from the homecare clinic of Dr Sardjito General Hospital were purposely selected during January 2017 to June 2018. Focus group discussions were conducted to explore the roles and problems of caregiving.Results: Themes related to caregivers’ roles were: connecting patients with medical personnel and other family members, maintaining patients’ health conditions by fulfilling basic needs and assisting rehabilitation, as well as maintaining patients’ psychological conditions by encouraging conversation, telling jokes, or recreation. On the other hand, themes related to caregivers’ problems were: lack of knowledge caused by education inadequacy, underappreciated and unconcerned family, suboptimal service including limited physiotherapy and pharmacy resource, unthorough administration, lack of communication, physical limitations, and burnout, as well as uncooperative patients.Conclusions: Caregivers play essential roles as communicators and help to maintain patient's health conditions. Common problems are related to a lack of knowledge about strokes and a lack of attention from family. 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. In Indonesia, stroke has been the leading cause of death and disability for ten consecutive years (2009-2019). Stroke, mainly affecting the elderly, may cause lifelong immobility, speech and communication problems, cognitive decline, urinary/fecal incontinence, and behavior changes that generally need long-term care. Therefore, stroke survivors become dependent on their caregivers, who take-on numerous roles and duties.Caring for stroke survivors is a long-term experience that could influence a person’s quality of life. 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. Caregiving services can be provided in a home-based setting, a rehabilitation facility, or a nursing home. In Asian population, the responsibility of caring the post-stroke patients mostly relies on family members, particularly the spouse or offspring who can provide caregiving in home-bound setting.Caregivers can be either formal or informal caregivers.Caregivers play a central role in post-stroke patients’ care. A substantial amount of care, particularly to perform the activity of daily living, is essential for stroke survivors to improve their functional status. Therefore, caregivers are recommended to be involved in post-stroke patients care to improve the quality of patient management.Currently, there are vast studies related to the experiences of caring for post-stroke patients. However, the role and problems managed by the caregiver while caring for post-stroke patients in Indonesia have not been widely studied. Accordingly, this study aims to explore the roles and problems of post-stroke caregivers in Indonesia. to identify initial themes and categories which describe the roles and problems of caregivers for post-stroke patients.This was a qualitative study to contextually explore a range of experiences and perspectives, not to seek an agreement. We used a grounded theory approachWe 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 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  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.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.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  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 (interquartile range [IQR] was 17). 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). 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  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 inAfter 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 .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 . Therefore, good communication skills are necessary for caregivers.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.... I have all the nurses’ contact numbers and mmm... what is it called... doctors’. And usually, if there is any problem... last night, for instance, she was using an urinary catheter and also a diaper. However, when I checked it, the diaper had been full with urine. In the morning, I sent text messages to a nurse and reported it: 'This blah blah blah, please check the catheter as it may be leaking...” (Participant 6)“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.… within a day, our services are bathing, when it is eating time we feed them, and.. usually Mr M is simple, after bathing we feed him via PEG…” (participant 4)“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.… yes, I stand by for 24 hours. At night I sometimes sleep next to him, to supervise him …” (participant 6)“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.… 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 1)“Role of caregiver in helping rehabilitation can be seen in this quote: 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.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.because my mother is ee .. her mobility is very limited, thus I need to feeding her using feeding tube. Other than that, what is it called? Catheter? Yes, a catheter! My mother is prone to urinary tract infection due to the catheter. Hence, sometimes if this infection develops, I have to... really have to do this, um ... to keep it clean... "(participant 7)“…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.this is my responsibility that she is completely dependent on us ... so we take care of her like 'because she is already completely dependent on us, so whatever happens to her, in my mind, it counts on us'... ”(participant 6)“...This can be elaborated with the quote from one of the interviewees below: 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:especially what we maintain is stabilitation of his mood. If he is happy, maybe mm... at least it doesn’t worsen his condition …” (participant 5)“…Caregivers spend a considerable amount of time engaging with patients and contribute to maintaining patients’ psychological conditions. Caregivers also have a great influence on the development of the patient's psychological condition and the prognosis.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.I actually don’t know a thing about stroke, the definition and how …” (participant 6)“…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:sometimes it is confusing, you know. For example, in stroke management, some sources said it is okay to do acupuncture, some other said it’s not recommended, but... it's varying and confusing... "(participant 2)“…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: In addition, it is recommended that the process of decision-making and treatment planning should involve both the family and the caregiver.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.we are afraid that later we will be blamed. I’ve experienced that. It’s like ‘that’s to bold’, or in Javanese ‘kok wani-wanine (how dare you?)’, even though we already did our best... ”“…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:Even got scolded” “Another caregiver said that she had been scolded when she encountered similar situation, like in the phrase below:no respect from the family” “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.I think it could be a fatal mistake” (participant 7)“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:I feel that the number of the physiotherapy sessions is not enough, but I know that they are really busy. We divide the resources, that's why we add from the third party...” (participant 5)“...sometimes I'm confused, for example, the doctor said, 'Ma'am, the lab result is good', 'which lab result, doc? I think it’s been a while since the last lab checks' …” (participant 6)“...The administration, I think, still have many rooms for improvement … Some things have been claimed, have been written, but then written again …”(participant 7)“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.… for example, the physiotherapist came and asked about the patient’s development, then I explained ‘Oh she is blah, blah, blah’, ‘Okay, I will report it to the doctor’. Later, the doctor will come empty-handed … seems like uninformed. That is what sometimes makes us disappointed …” (participant 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.…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…” (participant 7)“This was an example which expressing this problem: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. Periodic examinations or screening related to depression in the patients and their caregivers by their doctor is recommended. In addition, the deteriorating psychological condition of the patient is a heavy burden for the caregiver. Anxiety and depression while caring the stroke patients are related to the caregivers’ burden.Depression is one of the complications that often occurs in patients with a history of stroke. Other studies have shown that a high need for care is also a factor that influences caregiver’s burnout. Moreover, the emotional condition of the patient also affects caregiver’s burnout. The description of this problem can be seen in the following quote:during speech therapy, she persistently refused the therapy. The therapy ... at that time, it was from ... the speech therapy from Sardjito Hospital. When the therapist came, she pretended to sleep, and later after the therapist had came home, she woke up. She constantly refused it, she kept looking away. 'Ma'am, the therapist is coming ...' she insisted she did not want it. For communication, she responded, but she refused the therapy... "(participant 7)"...Long working hours, quality of patient health, stroke severity, and level of patient dependency are factors associated with caregiver’s burnout. 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.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. 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.https://doi.org/10.5281/zenodo.4716264.Zenodo: Roles and problems of stroke caregivers: A qualitative study in Yogyakarta, Indonesia.•English Translated Transcript-Edited-Final.doc (an English translation of the focus group transcript).The project contains the following underlying data:https://doi.org/10.5281/zenodo.4729367.Zenodo. Roles and problems of stroke caregivers: A qualitative study in Yogyakarta, Indonesia.•COREQ_checklist.pdfThe project contains the following reporting checklist:Creative Commons Attribution 4.0 International license (CC-BY 4.0).Data are available under the terms of theMuhrodji 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. I do not have any further comments to make.Is the work clearly and accurately presented and does it cite the current literature?YesIf applicable, is the statistical analysis and its interpretation appropriate?YesAre all the source data underlying the results available to ensure full reproducibility?YesIs the study design appropriate and is the work technically sound?YesAre the conclusions drawn adequately supported by the results?PartlyAre sufficient details of methods and analysis provided to allow replication by others?YesReviewer 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. The authors have revised the manuscript well- and the results and discussion of themes are better organised. Note:"..median age of 36 years (interquartile range [IQR] was 17)" can be written as "..median age of 36 (IQR 17) years.""Patients’ median age was 72 years (IQR was 14)" can be written as "Patients’ median age was 72 (IQR 14) years" The Conclusion section usually answers the study objectives, i.e., for this study refers to "..aims to explore the roles and problems of post-stroke caregivers in Indonesia". Hence the conclusion should recommend that future studies address the problems identified in this study and how to overcome them. Example would be perhaps to explore a module designed for training professional caregivers - since the problems highlighted in the study were mainly salaried caregivers. And the module would be appropriately written to address the educational level of the caregivers - instructions in lay person language, how to communicate with patients' relatives, addressing stress issues in caregivers e.g. to consider respite care for caregivers such as days or hours off from caregiving. The quantitative results can be improved i.e.,Is the work clearly and accurately presented and does it cite the current literature?YesIf applicable, is the statistical analysis and its interpretation appropriate?Not applicableAre all the source data underlying the results available to ensure full reproducibility?YesIs the study design appropriate and is the work technically sound?PartlyAre the conclusions drawn adequately supported by the results?PartlyAre sufficient details of methods and analysis provided to allow replication by others?YesReviewer Expertise:Family Medicine, Health system Research, Community Stroke & Economic evaluationsI 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. …yes, I stand by for 24 hours. At night I sometimes sleep next to him, to supervise him…" - Is it really accurate to be with the patient 24 hours a day? When will the caregiver sleep?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?"Understanding the roles and problems of caregivers mayhelp facilitate better management and increase the quality of life for both patients and their caregiver”. The author can suggest and suggest some points for further research in the future, which is more reasonable.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.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.The manuscript is well-written, presents the research contents in detail as well as analyzes, synthesizes and draws out results consistent with the research objectives. However, there are a few points the authors also need to pay attention to:Is the work clearly and accurately presented and does it cite the current literature?YesIf applicable, is the statistical analysis and its interpretation appropriate?YesAre all the source data underlying the results available to ensure full reproducibility?YesIs the study design appropriate and is the work technically sound?YesAre the conclusions drawn adequately supported by the results?PartlyAre sufficient details of methods and analysis provided to allow replication by others?YesReviewer 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. Title: Roles and Problems of Stroke Caregivers: A Qualitative Study in Yogyakarta, Indonesia.Response to reviewer 2We wish to thank you all for your constructive comments in this review. Your comments provided valuable insights to refine its contents.Comments The manuscript is well-written, presents the research contents in detail as well as analyzes, synthesizes and draws out results consistent with the research objectives. However, there are a few points the authors also need to pay attention to:…yes, I stand by for 24 hours. At night I sometimes sleep next to him, to supervise him…" - Is it really accurate to be with the patient 24 hours a day? When will the caregiver sleep?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 "Response: Thank you for your question. To clarify this quote, this statement from the participant was to depict that her duty was to standby for 24 hours. Of course, she did not wake up all day for 24 hours for monitoring and helping her patient. However, she meant that she was standby to caring her patient.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?Response: The caregivers’ problem we found in the present study is not lack of sympathy, sharing and love for the patient, but more to lack of respect between caregivers and (other) family members. The different findings may be due to different definitions of caregivers in Asian population. We mentioned this in the revised version in line 64-72. In Asian population, the responsibility of caring the post-stroke patients mostly relies on family members, particularly the spouse or offspring who can provide caregiving in home-bound setting.Of the caregiver's roles and problems, which one is the most important? Can the authors rank the importance of those roles and issues?Response: Thank you for your question, but we’re afraid that we cannot rank these roles and problems as we did not collect any quantitative data about these issues. We aim to identify the roles and problems of caregiving qualitatively."Understanding the roles and problems of caregivers may help facilitate better management and increase the quality of life for both patients and their caregiver”. The author can suggest and suggest some points for further research in the future, which is more reasonable.The research objective only mentions the roles and problems of caregivers, so the conclusion should only focus on this point, not giving the opinion Response: We would like to refine our conclusions. We agree that by understanding roles and problems of caregiver does not automatically improve post-acute care of stroke patient. Here is the revised conclusion: 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.Conclusionsan essential role in connecting patients with medical personnel and other family members, as well as maintaining the patient's physical and psychological condition. Meanwhile, the problems faced by caregiversface the problems of were lack of support from patients' family, lack of knowledge, suboptimal service, lack of communication and caregivers’ burnout. 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.[hd1]  Caregivers play  [hd1] [hd1] Revised conclusion as reviewer 2 suggested. Title: Roles and Problems of Stroke caregivers: A Qualitative Study in Yogyakarta, Indonesia.Abstract: Satisfactory.General impression:et al. (2021) for definitions of stroke caregivers. 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.Introduction: This section was too brief (2 paragraphs) and did not highlight the caregiver situation in Indonesia . There is mention that caregivers are made up of family members and professional caregivers. Suggest to highlight and define what professional caregivers are  and where were the caregivers located - is it in the patients’ own home or at a inpatient rehabilitation facility/ nursing home?Method: Focus group discussion was conducted to explore the roles and problems of caregiving .Sample recruitment: "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."Comment:  The definition of professional caregivers is unclear. Do you mean professional caregivers as trained and/or were they salaried caregivers?Data analysis: Why was the transcription not distributed to the caregivers for checking, verification? Is there a specific reason for this?Results: All subjects (caregivers) were female, median age of 36 years (?IQR), patients’ median age was 72 years (?IQR).Discussion:Roles of caregiver: Communication:Caregiver and patient;Caregiver and medical personnel i.e. doctor;Therapists and doctor.Role of caregiver: maintain patients’ health: The areas where communication problems most likely to occur should be grouped, summarized and examples quoted accordingly. Suggest to include examples of communication between: 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:“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…’ Paragraph 3.8”“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.“..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….” .Caregivers’ problems: unappreciated and unconcerned family.“Moreover, the family did not give enough appreciation to the caregivers.“no respect from the family” Conclusion: Paragraph 2: 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 .Is the work clearly and accurately presented and does it cite the current literature?YesIf applicable, is the statistical analysis and its interpretation appropriate?Not applicableAre all the source data underlying the results available to ensure full reproducibility?YesIs the study design appropriate and is the work technically sound?PartlyAre the conclusions drawn adequately supported by the results?PartlyAre sufficient details of methods and analysis provided to allow replication by others?YesReviewer Expertise:Family Medicine, Health system Research, Community Stroke & Economic evaluationsI 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. Title: Roles and Problems of Stroke Caregivers: A Qualitative Study in Yogyakarta, Indonesia.Response to reviewer 1. 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.Comment 1Introduction: This section was too brief (2 paragraphs) and did not highlight the caregiver situation in Indonesia . There is mention that caregivers are made up of family members and professional caregivers. Suggest to highlight and define what professional caregivers are  and where were the caregivers located - is it in the patients’ own home or at a inpatient rehabilitation facility/ nursing home?Response: We would like to thank you all for this comment. We agree that the differences in who cares for stroke patients  should be included in introduction to give our readers a bit of knowledge about how stroke patients are being cared in Indonesia. We have also added a reference as you suggest in refer to the definition of caregivers in Asian population.Revised text :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 individuals6. Caregiving services can be provided in a home-based setting, a rehabilitation facility, or a nursing home7.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 setting8. [ANV1]  Caregivers can be either formal or informal caregiversComment 2Method: Focus group discussion was conducted to explore the roles and problems of caregiving .Sample recruitment: "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."Comment:  The definition of professional caregivers is unclear. Do you mean professional caregivers as trained and/or were they salaried caregivers?Response: We thank for your valuable comment. In this study, we recruited only informal caregivers. We apologize by making a mistake in mentioning professional caregivers. Hence, we have revised the text as below: Inclusion criteria were: (1) family caregivers or a domestic helper[hd2] ,.Comment 3Data analysis: Why was the transcription not distributed to the caregivers for checking, verification? Is there a specific reason for this?Response: There was no specific reason for not returning the transcript to respondents. We realize that it may lead to bias or misinterpretation, thus we put this issue in the limitation. We will take this point as a suggestion for improvement in further research.Comment 4Results: All subjects (caregivers) were female, median age of 36 years (?IQR), patients’ median age was 72 years (?IQR).Response: Initially we only used median, minimum, and maximum number due to the sample size for this study is small. However, we have added the interquartile range as well in the revised version as below: 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.Comment 5Discussion:Roles of caregiver: Communication:Caregiver and patient;Caregiver and medical personnel i.e. doctor;Therapists and doctor.Response: Communication problems had been found in caregivers’ problems’ section. We have rewritten this section as you suggest us to. Communication problems between therapists and doctors, while were very likely to occur, were not surfaced during FGD. There were some other themes that likely been caused by this particular problem (therapists and doctor’s communication), however we’re afraid that were just our assumption so we did not include this in our writing. The areas where communication problems most likely to occur should be grouped, summarized and examples quoted accordingly. Suggest to include examples of communication between: 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:Caregivers’ problems: lack of communicationto be time-consuming. Poor communication is associated with less effective services7. 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:…for example, the physiotherapist came and asked about the patient’s development, then I explained ‘Oh she is blah, blah, blah’, ‘Okay, I will report it to the doctor’.Later, the doctor will come empty-handed…seemslike uninformed. That is what sometimes makes us disappointed… ”(participant 7) [hd5]  “s are still high25. 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] Comment 6Role of caregiver: maintain patients’ health: 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:“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…’ Paragraph 3.8” “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.“..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….” .Response: We have re-organized this section by citing the quote after each point in order to improve the flow of writing. Paragraph 2:Roles of caregiver: maintaining patients’ health 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 complications7,11 . 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:…within a day, our services are bathing, when it is eating time we feed them, and.. usually Mr M is simple, after bathing we feed him via PEG…” (participant 4)[hd7]  “ir patients and help them to have good and adequate sleep11,12 . Caregivers[ANV8] also monitor the sleep pattern of the We can see this role in this quote:es, I stand by for 24 hours. At night I sometimes sleep next to him, to supervise him…” (participant 6)[hd9]  “…yes by giving additional physiotherapy services at home. This is in accordance with the rehabilitation recommendations which stated that families and caregivers are involved in determining the goals and implementation of post-stroke patient rehabilitation10. During rehabilitation, caregivers also play a role in assisting rehabilitation process Role of caregiver in helping rehabilitation can be seen in this quote: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 1)[hd10]  “…s plays essential roles toin preventing and managing complications that eventually mayeventually develop. This role is in accordance with a previous study which found that caregivers can help reduce the incidence of post-stroke complications13. However, the study above used a formal training program for caregivers which was rather too impractical to be implemented in this study. The importance of training orandeducation for caregivers is also supported by other studies that showed a reduction in complications through providing education programs to caregivers14 . Furthermore, caregiver This[ANV11] role can be seen in the following quote:because my mother is ee .. her mobility is very limited, thus I need to feeding her using feeding tube. Other than that, what is it called? Catheter? Yes, a catheter! My mother is prone to urinary tract infection due to the catheter. Hence, sometimes if this infection develops, I have to... really have to do this, um ... to keep it clean... "(participant 7) “…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 patients15-17 . 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:this is my responsibility that she is completely dependent on us ... so we take care of her like 'because she is already completely dependent on us, so whatever happens to her, in my mind, it counts on us'... "(participant 6) "...Comment 7Caregivers’ problems: unappreciated and unconcerned family.“Moreover, the family did not give enough appreciation to the caregivers.“no respect from the family” Response: We appreciate reviewer’s comment related this matter. Caregivers’ problems related to unappreciated and unconcerned family were the problems faced by domestic helpers as the informal caregivers. Therefore, we have written additional explanation in the quotes of participant 2 and 3, as written in the revised text. 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:we are afraid that later we will be blamed. I’ve experienced that. It’s like ‘that’s to bold’, or in Javanese ‘kok wani-wanine (how dare you?)’, even though we already did ourbest... " “… Another caregiver said that she had been scolded when she encountered similar situation, like in the phrase below:Even got scolded"  " Moreover, the family did not give enough appreciation to the caregivers.no respect from the family"  "Comment 8Conclusion: 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 .Response: We appreciate your suggestions. However, we’re afraid that providing recommendation to handle these issues is out of scope of this paper. Maybe we can add some opinion to add some solution to these issues, but as the aim of this paper is to widen and deepen our knowledge about roles and problems of caregivers’, we decided not to add recommendation on how to handle the caregiver issues. Nevertheless, we have added a closing statement in the conclusion as below: 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


This paper assesses the psychometric qualities of the Patient Experience Questionnaire (PEQ), thereby validating a patient-oriented measurement model in a hospital environment, and modifies the model based on empirical results. This study employed survey data gathered by the Norwegian Institute of Public Health from adult inpatients at somatic hospitals in the Health South-East RHF in Norway. The survey engaged 4603 patients out of 8381 from five main hospitals in the region. The study found that an eight-factor model of the PEQ generally showed good fitness to the data, but assessment of discriminant validity showed that this was not the optimal factor solution among four of the eight dimensions. After comparing models, the study proposed a model with a second-order factor for four of the factors: “nurse services”, “doctor services”, “information”, and “organization”, collectively named “treatment services”. The proposed model demonstrated good validity and reliability results. The results present theoretical and practical implications. The study recommends that inferential analyses on the PEQ should be done with the second-order factor. Furthermore, a revision of the PEQ is recommended subject to more confirmatory studies with larger samples in different regions. The study indicates a second-order factor structure for assessing and understanding patient experiences—a finding which has both theoretical and managerial implications. Healthcare professionals are facing heavy pressure to meet the growing needs of patients such as medical, physical, and psychological healthcare needs  as well The endeavour of gathering patients’ experiences with healthcare has gained popularity, thus resulting in the development of PREMs that have been used in surveys in various countries ,5,6,7,8.From patients’ perspectives, interactions with dimensions of healthcare have been theoretically underpinned by the Donabedian framework for assessing healthcare quality , which iIncreased understanding of patient experiences of hospital climate has similarly been aided by increased research and several studies on measuring the construct. Measurements in social science provide adequate guidelines for assessing phenomena and people’s attributes that are not directly and easily observable . EmployiThe goal to accurately measure patient experiences has resulted in several PREMs for general and specialized healthcare . The queThe Norwegian Institute of Public Health (NIPH) conducted a survey in the east health region among a few hospitals, adapting an earlier validated PREM, the Patient Experience Questionnaire (PEQ) . In the Beattie et al.  also notAdditionally, some PREMs have been developed in Norway to capture the phenomenon of patient experiences with general health practice as well as experiences with specific health issues and fields, with most of them asking questions on general patient satisfaction ,18,22,23This study employed anonymous survey data from the Norwegian Institute of Public Health gathered from adult inpatients at somatic hospitals in the Health South-East RHF in Norway. These somatic hospitals dealt with issues generally affecting the bodies of patients and thus, were not specialized. The survey was started by the Norwegian Knowledge Centre for Health Services in the fall of 2015 and was continued at the Norwegian Institute of Public Health in the first quarter of 2016. It is worth noting that the last major reform and restructuring done in the Norwegian health sector was in 2002; where ownership of hospitals was transferred to the state. Thus, although changes have been made over the years since then, they are minor and incremental to the 2002 reform, focusing more on better standardization. These changes may therefore not affect this study in a major way. The survey engaged patients from 5 main hospitals in the region who were admitted for at least a day. The eligibility criteria were patients who were admitted between October and November in 2015 and who were admitted to the hospitals for at least one night. The study excluded outpatients. Patients who visited the 5 hospitals were identified through their contact information after they were discharged. Questionnaires were sent to their respective addresses via post mail with a return envelope. About 8381 patients were eligible and contacted. The total number of respondents who completed and returned their questionnaires was 4603, yielding a response rate of 54.92%. Patients were asked to consider various aspects of their experience being admitted. The questionnaire aimed at using feedback to identify which areas are working well and which areas the hospital should work to improve. The Patient Experience Questionnaire (PEQ) comprised 8 dimensions and 33 items as well as items on patient safety, patient satisfaction, and overall health benefits and health level. The NIPH adapted the questions for the survey from the PEQ developed and validated by Pettersen et al. [The study analysed the data with the aid of Microsoft Excel , SPSS v.24 , and AMOS v.25 . Preliminary analysis  was conducted in SPSS. The missing values were found to be not at random, and therefore being mindful of how they were replaced was necessary. The study chose to use multiple imputations to replace them as recommended for non-randomness ,29. HoweThe initial measurement model (Model 1) was developed in AMOS without modification indices . Missing values were replaced with the series mean method after the estimation of the initial model to obtain modification indices for correlating error terms among the items and improving the fitness of the model (Model 2). It is noteworthy that the missing values were only replaced in order to generate a full estimation with modification indices for correlating the error terms. Although all subsequent models after the initial model were estimated with the correlated error terms, estimations were done on the data with missing values, with the aim of obtaining a more accurate fit of the data to the models.The initial model with modifications (correlated error terms), Model 2, was compared with 6 other models (Models 3–8), obtained by combining some dimensions into a single factor to further justify the fitness of the modified initial model. These combinations were based on the correlation coefficients between the dimensions. In addition, a proposed model containing a second-order factor for “nurse services”, “doctor services”, “information”, and “organization” was also developed and compared with the initial modified model based on the validity tests, correlation analyses, and theoretical justifications (wording of questions). Fitness of all the models was ascertained using the following indices: Comparative Fit Index (CFI), Tucker Lewis Index (TLI), Root Mean Square Error of Approximation (RMSEA), and the PCLOSE. The thresholds recommended by Hu and Bentler  are presValidity in this study was ascertained using convergent, discriminant, and predictive validity tests. Convergent validity deals with the relationship between a latent construct (patient experience dimensions) and its items . The aveThis study, with regard to data collection, analysis, and compilation, was conducted within the ethical and legal provisions and guidelines of the Norwegian Institute for Public Health (NIPH) and the University of Stavanger. The Norwegian Data Protection Authority and the Norwegian Directorate of Health approved the procedures in the survey. The hospital data protection official assessed the data processing in the hospitals where survey extension took place. Informed consent was obtained from participants in the survey. Respondents were informed that participation was voluntary and they were assured of confidentiality of the information they will provide. Respondents were also informed that they could opt out of the survey at any point as well as the procedure for opting out if they wished. Data was stored in a safe repository with a password, only accessed by the researchers. This study did not present results that revealed patients’ identities, thus maintaining anonymity of respondents and confidentiality of responses. All relevant ethical requirements were duly upheld.The study made use of responses from 4603 participants. Outliers were recorded for some of the questions, but this was to be expected considering the varied background characteristics, such as age and number of days spent in the hospital, which could influence participants’ experiences. Nonetheless, most of these outliers were not deemed extreme based on the 1.5 and 3.0 interquartile ranges. Normality was also ascertained, using the −2 and +2 range , for allThe initial CFA model Model 1, , with thModel 2 was further examined for invariance across three categories: configural, metric, and scalar. Measurement invariance tests seek to ascertain whether the measurement model differs across variant groups in a data. The goal is to achieve little or insignificant variance across these groups in order to inspire confidence in the ability of the measure to generate accurate responses and assessments across groups . ConfiguReliability for the measure was ascertained using composite reliability (CR) values. Generally, CR values above 0.70 are deemed acceptable to justify reliability. From Convergent validity was examined using the AVE values, where an AVE value of at least 0.50 is considered acceptable . Table 4Construct validity for the items was examined by checking item loadings (parameter estimates) on their dimensions. Generally, good loadings were recorded as a majority of the items had loadings above 0.60. The item loadings ranged from 0.88 (on “discharge”) to 0.55 (on “standard”). Two items had loadings below 0.60: 0.58 (ORG 2) and 0.55 (ST 5). Based on the suggestion of the master validity tool , these iThe study then assessed the predictive validity of the model based on its ability to relate to and predict outcome variables ascertained in existing literature. Overall satisfaction, health benefits, and health level were used as outcome variables while the patient experience measure and its dimensions were used as predicting variables. Patient experience measure and dimensions were computed with retained items after item deletion, and multiple linear regression was performed with age and number of days spent in hospital as control variables. The results showed that overall patient experience and each individual dimension related to and predicted at least one outcome variable positively and significantly. These results are presented in A proposed model (Model 11) was developed, taking into consideration the frequencies of missing values for the items and the discriminant validity concerns. Items with missing values of more than 20% were excluded; therefore, the dimensions of “discharge” and “interaction” were removed from the model. The items on “next of kin” had more than 20% but the dimension was maintained. The questions were the following: “NK1: Were your relatives well received by the hospital staff?” and “NK2: Was it easy for your relatives to get information about you while you were in the hospital?” These questions were maintained because, unlike the other dimensions, relating and answering them depended on factors that are largely beyond the control of the patient, such as whether or not the patient had any relatives alive who visited the hospital and whether the patient stayed in the hospital long enough for relatives to visit the hospital. A second-order factor was added in the proposed model for “nurse services”, “doctor services”, “information”, and “organization”, collectively labelled “treatment services”. This was based on the discriminant validity results, correlations among them, and the nature of the questions asked under these dimensions. The two lowest loading items (ORG 2 and ST 5) that were previously deleted were still excluded from this model. The proposed model showed excellent fitness to the data (similar to Model 10) and also met convergent, discriminant, and criterion-related validity requirements. See This study presents some major findings. First, the study confirmed that the eight-factor model showed good fitness to the data. The model achieved configural and metric invariance but not scalar invariance. The study also found that reliability values were all acceptable and all the dimensions, except “standard”, attained the recommended 0.50 AVE value for convergent validity. With regard to discriminant validity, “doctor services” (in relation to “information”), “organization”  and “standard” (in relation to “organization”) had issues. Construct validity and criterion-related validity were supported for majority of the results. One item each under “standard” and “organization” had the lowest loadings. Finally, a model including a second-order factor was proposed. The second-order factor, named “treatment services”, consisted of four first-order factors: “nurse services”, “doctor services”, “information”, and “organization”. Moreover, the dimensions of “standard” and “next of kin” were included in this final model, but “discharge” and “interaction” were excluded. Hence, the final model included one second-order factor comprising four sub-factors as well as “standard” and “next of kin”.The dimensions with associated items found in this study were similar to those found by Pettersen et al.  while soWith regard to validity tests, the study found that all the dimensions, except “standard”, attained the recommended 0.50 AVE value for convergent validity, similar to other related studies that examined similar dimensions using other instruments . HoweverLastly, a model with a second-order factor, “treatment services”, for four of the dimensions was proposed based on the results of the validity and reliability analyses: “nurse services”, “doctor services”, “information”, and “organization”. This constitutes the most important contribution of this study since this possibility was not explored in the study by Pettersen et al. , perhapsThis study brings a very important, yet mostly ignored, contribution to the patient experience and quality healthcare literature: a need for more validation studies and surveys on patient experiences. The study responds to the recommendation by Pettersen et al.  that exiAnother major contribution of this study is the finding of a second-order factor labelled “treatment services”, which consists of four factors: “nurse services”, “doctor services”, “information”, and “organization”. This means that there exist strong and significant relationships among these dimensions . This fiQuality healthcare delivery is not exclusive to a region or country but a general goal of all healthcare systems worldwide. This can be contributed to by generating accurate information on how healthcare users experience healthcare systems. The results from this study suggest that it is not enough to develop a good measure of patient experiences, but it is imperative to review and reassess the ability of the measure to keep generating accurate information on patients’ experiences and health. The questions in the PEQ may have to be revised in order to elicit more concise and accurate information from patients. Furthermore, some dimensions, such as “next of kin”, seemed not to be relatable to most of the patients, judging from the many missing values and invariance tests. In addition, the PEQ should be administered with the second-order factor taken into consideration. It is imperative to analyse “nurse services”, “doctor services”, “information”, and “organization” as a second-order factor, as shown in the proposed model, due to the validity issues that were realized in the analysis. This can provide researchers and management with adequate knowledge on what patients experience during the caregiving process. Moreover, management must take the interrelationships in the second-order factor into account to make meaningful, informed, and sustainable changes in the hospitals for patients. The second-order factor must be considered as a single factor encompassing these four dimensions, where patients’ perceptions and interactions with a dimension have a ripple effect on the others. Such considerations in policies and practice can help management and workers to reduce errors that may have dire consequences.This study employs data that is not at the national level but from a health region in Norway. That notwithstanding, the study has good generalizability power owing to the similarity in hospital and healthcare systems across the regions in Norway. Generalizing to other countries, however, is difficult due to the differences in culture and healthcare systems. The findings require additional research in different countries for further justification. Therefore, future studies on reassessing psychometric properties of PREMs may want to employ larger data sets, for instance at the national level or across regions, to further investigate and develop the measurement quality of such surveys. Furthermore, future research should adopt the proposed model (with the second-order factor) from this study and examine it empirically to confirm it or otherwise, within health sectors across different countries. It is also worth noting that only nurses’ and doctors’ services were assessed but not the services of other healthcare professionals in hospitals. Future research on developing and improving PREMs should therefore incorporate questions that assess the experience of services of other professionals.Hospital management should know and consider the views and experiences of the people they care for if their services are to be influential in improving patients’ health. The results of this study show that changes in psychometric analytical tools and methods can indeed highlight possible weaknesses and inadequacies in measures, as seen with the PEQ. This is evident in analyses such as invariance, discriminant validity, and second-order factors conducted in the current study but absent in the earlier study. Therefore, repeated surveys with refined and further developed questionnaires are needed to hopefully improve the performance of the measures. The results also indicate possible changes with regard to dimensionality of PREMs, owing to the second-order factor finding. This calls for adequate attention, from researchers and hospital management alike, to the interrelationships among some of the dimensions, as this has important implications for theory and practice in healthcare. Management should consider these relationships in making decisions concerning the quality of care for patients, while researchers should delve more into studies that ascertain the psychometrics and dimensionality of PREMs.