Experiences of Dysphagia after Stroke: An Interview Study of Stroke Survivors and Their Informal Caregivers

Round 1

Reviewer 1 Report

It is an extremely long article based on an interview with 5 patients.  I think this can be shortened.  There is too much elaboration on the methodology which rarely interests the reader in my opinion.

Author Response

Response to Reviewer 1 Comments

 

It is an extremely long article based on an interview with 5 patients.  I think this can be shortened.  There is too much elaboration on the methodology, which rarely interests the reader in my opinion.

 

Response 1: Thank you for your comment. We have taken this on board and edited the methodology section while trying to balance that with the need for transparency and giving the reader sufficient information that they would be able to replicate what was done. We have reduced the word count specifically in Sections 2.6-2.11 and combined the sections on Data Collection and Data Instruments.

 

Reviewer 2 Report

This is an interesting study about the perspective of post-stroke patients and carers on one of the main complications on stroke, oropharyngeal dysphagia. There are not many qualitative studies such this one on this field, however the sample size is reduced (3 patients, 2 patient-carers and 1 carer) and the settings and the days from the stroke onset very variable. It would have been better to have more testimonials of the different groups studied and to have more homogeneous groups (setting and days from stroke onset) in order to extract more precise conclusions.

You have described the main thoughts and concers of the study population and have concluded that there are some important needs to improve post-stroke oropharyngeal dysphagia patient's management.

Overall, an interesting paper in order to know the experinces of these patients and carers in that specific situation.

 

Author Response

Response to Reviewer 2 Comments

 

This is an interesting study about the perspective of post-stroke patients and carers on one of the main complications on stroke, oropharyngeal dysphagia. There are not many qualitative studies such this one on this field, however the sample size is reduced (3 patients, 2 patient-carers and 1 carer) and the settings and the days from the stroke onset very variable. It would have been better to have more testimonials of the different groups studied and to have more homogeneous groups (setting and days from stroke onset) in order to extract more precise conclusions.

 

Response 1: Thank you for your comment. In response to your feedback and that of one of the other reviewers we have included in the Discussion section that a potential limitation of the study is the sample size and that the time of the interview post stroke is variable.

 

The authors acknowledge the potential limitations of the study. Firstly, the sample size is limited and reflects the opinions of a small group of stroke survivors and their informal caregivers. Secondly the interviews took place in different settings and at different times during the stroke survivors’ pathway, which may have influenced their perspectives of the first few days post stroke.

 

You have described the main thoughts and concerns of the study population and have concluded that there are some important needs to improve post-stroke oropharyngeal dysphagia patient's management.

Overall, an interesting paper in order to know the experiences of these patients and carers in that specific situation.

 

Response 2: Thank you for your positive feedback.

 

Reviewer 3 Report

Introduction:

（1）I found the research gap to not be clearly defined in the introduction. What is the driving force to better understand the experience of people with swallowing difficulties following a stroke? To make the introduction more substantial the author may wish to provide references to how better understanding the narratives of stroke patients experience with dysphagia will improve. This will also clarify the motivation for the study thus differentiating it from others.  

(2）Additionally, it was unclear why the role of caretakers in dysphagia was important to include for the sake of this study. While the author does validate the inclusion of caretakers in the discussion it should also be mentioned in the introduction. Previously, have poor outcomes been associated with lack of knowledge/involvement of caretakers? I think it would strengthen the paper if there was more justification and clarity included on the inclusion of caretakers in the introduction. 

 

Methods:

（1）The study is limited by the small sample size. I do not believe this can be remedied in a revision but should be noted as a limitation. This is more of a pilot study given the small number.  

（2）Additionally, interviews were conducted 8 to 100 days following the stroke. This large range can skew the data, especially given the focus on patients experience as patients perspectives can change over time. Patients may have a different experience immediately after the incident verses 3 months later. Furthermore, with a larger sample size the data analysis can be done is a more systematic manner. 

Author Response

Response to Reviewer 3 Comments

 

Introduction:

（1）I found the research gap to not be clearly defined in the introduction. What is the driving force to better understand the experience of people with swallowing difficulties following a stroke? To make the introduction more substantial the author may wish to provide references to how better understanding the narratives of stroke patients experience with dysphagia will improve. This will also clarify the motivation for the study thus differentiating it from others.  

 

Response 1: Thank you for your comment. The reason for better understanding the experience of people with swallowing difficulties following a stroke was to ensure that all relevant stakeholders were involved and that our research did not solely reflect the views and perspectives of staff involved in the assessment and management of dysphagia (Eltringham, 2019). To not include stroke survivors in our research would have potentially resulted in risk of bias. We also listened to the service users who were involved in the design stage of the study that recommended that a small group of patient participants be included (Line 96, 118-119). 

 

We have reflected on your comments and as a consequence have expanded on the reasons for understanding the experience of people with swallowing difficulties. We have provided references to support these reasons.

 

This study forms part of a series of studies ^[11-13], which aim to investigate how variation in assessment and management of dysphagia in acute stroke affects development of SAP. The aim of this interview study is to explore the experiences of people with swallowing difficulties following a stroke to give a more rounded picture of delivery of care and ensure that the perspectives of stroke survivors and their informal caregivers are included. We wanted to include the patient story of swallowing difficulties post stroke as a way to better understand the patient experience of dysphagia assessment and management, as well as the views of the staff involved ^{[13, 14]}. Including the patient story has the potential to highlight variations in practice from the perspective of the persons affected, thereby providing a more inclusive understanding of service delivery. Informal caregivers can also provide another dimension and a contribution to better understanding of patient care as well as insight into their role. We also wanted to extend beyond formal data collection against narrow performance indicators by interviewing people who had a swallow assessment during the first 72 hours of admission into hospital, alongside other clinical processes and/or medical interventions that take place in the first few days post stroke.

 

(2）Additionally, it was unclear why the role of caretakers in dysphagia was important to include for the sake of this study. While the author does validate the inclusion of caretakers in the discussion it should also be mentioned in the introduction. Previously, have poor outcomes been associated with lack of knowledge/involvement of caretakers? I think it would strengthen the paper if there was more justification and clarity included on the inclusion of caretakers in the introduction. 

 

Response 2: Thank you for your comment. We have included an additional sentence in the introduction (see above highlighted text) that we feel adds justification to the inclusion of informal caregivers in the study. Thank you for highlighting this as we feel the mention of this in the introduction as well as the discussion has improved the paper.

 

Methods:

（1）The study is limited by the small sample size. I do not believe this can be remedied in a revision but should be noted as a limitation. This is more of a pilot study given the small number.  

（2）Additionally, interviews were conducted 8 to 100 days following the stroke. This large range can skew the data, especially given the focus on patients experience as patients perspectives can change over time. Patients may have a different experience immediately after the incident verses 3 months later. Furthermore, with a larger sample size the data analysis can be done is a more systematic manner. 

 

Response 3: Thank you for your comments. In response to your feedback and that of one of the other reviewers we have acknowledged the limitations about the small sample size and the range in days from the stroke onset in the Discussion section.

 

The authors acknowledge the potential limitations of the study. Firstly, the sample size is limited and reflects the opinions of a small group of stroke survivors and their informal caregivers. Secondly the interviews took place in different settings and at different times during the stroke survivors’ pathway, which may have influenced their perspectives of the first few days post stroke.

 

Reviewer 4 Report

This study is a meaningful qualitative study (interview study) that explores 16 perspectives on stroke survivors and informal caregivers who have been evaluated to have been swallowed during the first few days of a rehabilitation hospital. The topic of the paper (dysphagia) meets the scope of the journal. The paper itself is well described but somewhat explanatory. The work is carried out at a sufficient scientific level and the quality is good. The results of qualitative analysis are interpreted professionally. The manuscript may be considered for publication after minor modifications of 'Geriatrics'. My decision is a minor modification.

1. 40 rows; The term 'speech-language pathologist' seems to be more widely used than the term 'speech and language therapist'. At the discretion of the author, it is advisable to change the term to 'speech-language pathologist'.

2. line 493; It is a good idea to expand the "Conclusion" section slightly.

Author Response

Response to Reviewer 4 Comments

 

Reviewer 4

This study is a meaningful qualitative study (interview study) that explores 16 perspectives on stroke survivors and informal caregivers who have been evaluated to have been swallowed during the first few days of a rehabilitation hospital. The topic of the paper (dysphagia) meets the scope of the journal. The paper itself is well described but somewhat explanatory. The work is carried out at a sufficient scientific level and the quality is good. The results of qualitative analysis are interpreted professionally. The manuscript may be considered for publication after minor modifications of 'Geriatrics'. My decision is a minor modification.

 

Response 1: Thank you for your positive feedback.

40 rows; The term 'speech-language pathologist' seems to be more widely used than the term 'speech and language therapist'. At the discretion of the author, it is advisable to change the term to 'speech-language pathologist'.

 

Response 2: Thank you for your comment I have amended the term from speech and language therapist to speech and language pathologist on Line 40 and used the abbreviated term SLP throughout the manuscript.

 

line 493; It is a good idea to expand the "Conclusion" section slightly.

 

Response 3: Thank you for your comment. I have expanded the Conclusion slightly as suggested and included a sentence about the summary of the findings. 

 

This interview study has explored patient and informal caregiver experiences of patient’s having their swallow assessed post acute stroke as part of a mixed methods design study. The research has identified six themes related to: how an individual’s past-future experiences may influence their emotional response to the stroke; difficulty understanding what is happening at stroke onset and adjustment; the impact of dysphagia; attitudes to care; communication to patients and procedural issues around screening for dysphagia. People affected by stroke were involved in analysing data and identifying themes, which were perceived as being relevant and most important to patients and their informal caregivers. The findings highlight the importance of effective public health messages to improve people’s responsiveness to the signs of stroke, standardisation of assessment and management procedures, clear and effective communication to patients about the consequences of dysphagia, and the impact of dysphagia beyond the hospital environment.

 

Round 2

Reviewer 1 Report

The new version has improved.  I suggest the current submission can be published