Exploring Social Participation Among Adults with Spinal Cord Injury During the Second Wave of the COVID-19 Pandemic in Canada

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Thank you for the opportunity to review this manuscript.   I have some minor suggestions as follows:

Page 3 - 4 Section 3:  Would like a little more on participants.  While can be deduced that if there were 12 males, then there were 6 females, I kept looking to see that outlined in the paragraph.

Page 5, line 159:  "placed on a waiting"  feels like the word "list" should conclude the sentence.

Author Response

Thank you for reviewing our manuscript and taking the time to provide comments which we have addressed below.  

Comment 1: Page 3 - 4 Section 3:  Would like a little more on participants.  While can be deduced that if there were 12 males, then there were 6 females, I kept looking to see that outlined in the paragraph.

Response 1: The number of female participants was added on P. 4; L. 345.  

Comment 2: Page 5, line 159:  "placed on a waiting" feels like the word "list" should conclude the sentence.

Comment 2: Modified to "placed on a waiting list" on P. 5; L. 393.

Reviewer 2 Report

Comments and Suggestions for Authors

Thank-you for this addition to the literature regarding the impact of the pandemic on people with disabilities.

There are some methodological concerns that I have that need to be addressed before this article is ready for publication.

I would replace the term cross-sectional study and instead refer to a qualitative descriptive study. While strictly speaking it is also cross-sectional this type of study is more commonly referred to as qualitative due the nature of the data collected. Qualitative research is a means for exploring and understanding the meaning individuals or groups ascribe to a social human problem. Your study aim uses the term "explore", suggesting a qualitative design. However, it is not clear how the authors arrived at their methodological approach. Please provide a reference/more justification as to  how you decided the methods used to address this aim/research question. eg. Creswell or Patton. Were other data collection methods considered? What is your research paradigm?

Having reviewed your interview questions, it would be beneficial for you to provide more information about the parameters of the study. eg How do you define social participation? The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) defines participation as involvement in a life situation at the societal level. Participation includes activities and tasks within the social role. So work, education, leisure are core concepts of social participation. However your questions relate more to access to services, physical activity, and interpersonal activities (not to say these  are not important), but there are no questions specifically about work, education, leisure/recreation etc. I do see a reference to the Disability Creation Process that states Social Roles are as:  Community and spiritual life; Education; Employment; Recreation. Again these social roles are not addressed in this study

In relation to data collection and analysis, more detailed description of the process used would provide the reader with more confidence that the process was rigorous and utilised "good practice". Was there an audit trail kept, was there an iterative and reflexive process? Were there any other data collected - for example reflexive journals? Was a framework such as the COREQ guidelines used?

The presentation and description of the themes and sub-themes needs more work to accurately reflect the content included. Thematic analysis requires searching for meaning not just reporting back on a whole heap of things that participants said. I suggest the authors go and seek more guidance on thematic analysis. Perhaps a diagram/figure may also help clarify themes and sub-themes.

In general more specific data relating to the pandemic restrictions is needed. It was interesting that participants spoke about everyone now being forced to do what they do all the time. This has been reported elsewhere by PWD living through lockdowns, and could be further elaborated on. I also think the concept of adaptation is important in this study and could be further discussed.

I suggest access to healthcare and social participation are different concepts and therefore should be analysed and discussed separately. 

I hope the authors find these comments helpful. 

Comments for author File: Comments.pdf

Comments on the Quality of English Language

Some minor English grammar issues require attention.

Author Response

Thank you for reviewing our manuscript and taking the time to provide comments which we have addressed below. 

Comment 1: I would replace the term cross-sectional study and instead refer to a qualitative descriptive study. While strictly speaking it is also cross-sectional this type of study is more commonly referred to as qualitative due the nature of the data collected. Qualitative research is a means for exploring and understanding the meaning individuals or groups ascribe to a social human problem. Your study aim uses the term "explore", suggesting a qualitative design. However, it is not clear how the authors arrived at their methodological approach. Please provide a reference/more justification as to how you decided the methods used to address this aim/research question. eg. Creswell or Patton. Were other data collection methods considered? What is your research paradigm?

Response 1: Given the aim of this study was to generate uncomplicated description of experiences during the pandemic (e.g., focused on the details of what, where, when, and why of an event) a qualitative descriptive design was used. Action: The term “cross-sectional” was replaced with “qualitative descriptive” in the abstract (P. 1; L. 18) and in the methods (P. 2; L. 86-87). The Reference was changed to support this choice of study design, citing Holly et al. Qualitative Descriptive Research (2014).

Comment 2: Having reviewed your interview questions, it would be beneficial for you to provide more information about the parameters of the study. eg How do you define social participation? The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) defines participation as involvement in a life situation at the societal level. Participation includes activities and tasks within the social role. So work, education, leisure are core concepts of social participation. However, your questions relate more to access to services, physical activity, and interpersonal activities (not to say these are not important), but there are no questions specifically about work, education, leisure/recreation etc. I do see a reference to the Disability Creation Process that states Social Roles are as:  Community and spiritual life; Education; Employment; Recreation. Again these social roles are not addressed in this study.

Response 2: A definition of social participation and the related constructs within the HDM-DCP (currents activities and social roles) was added on P.2; L. 64-69: “Social participation, defined as the total accomplishment of life habits, is influenced by the interaction between individual’s personal characteristics and their environment according to the Human Development Model – Disability Creation Process (HDM-DCP) [13]. There are categorized into two mains’ categories: currents activities (e.g., personal care and health, physical fitness and psychological well-being, housing) and social roles (e.g., interpersonal relationship, responsibility, recreation) [13].”

Comment 3: In relation to data collection and analysis, more detailed description of the process used would provide the reader with more confidence that the process was rigorous and utilised "good practice". Was there an audit trail kept, was there an iterative and reflexive process? Were there any other data collected - for example reflexive journals? Was a framework such as the COREQ guidelines used?

Response 3: Additional details of data collection and data analysis were added on P. 3; L. 272-281.  

Comment 4: The presentation and description of the themes and sub-themes needs more work to accurately reflect the content included. Thematic analysis requires searching for meaning not just reporting back on a whole heap of things that participants said. I suggest the authors go and seek more guidance on thematic analysis. Perhaps a diagram/figure may also help clarify themes and sub-themes.

Response 4: The steps followed for the thematic analysis were added on P.3; L. 274-276. We have also renamed some of the themes and sub-themes on P. 5; L.428, P.6; L. 471 and P.9; L. 631 to better reflect the content.

Comment 5: In general more specific data relating to the pandemic restrictions is needed. It was interesting that participants spoke about everyone now being forced to do what they do all the time. This has been reported elsewhere by PWD living through lockdowns, and could be further elaborated on. I also think the concept of adaptation is important in this study and could be further discussed.

Response 5: We have expended on this on the discussion. For example, we added: “However, in the present study a general sentiment was that “[...] Everyone is forced to do what I'm forced to do all the time.” This observation raises concerns regarding the usual living conditions for people with disabilities. Considering that COVID-19 public health measures were found to be challenging for many individuals without disabilities (e.g., increased anxiety and depression, impacts on usual activities) [44], the findings suggest that existing measures designed to support individuals with disabilities, even beyond the context of a pandemic, may be insufficient to ensure their full social participation and wellbeing.” (P.11; L. 763-770). We also discussed about adaptation and resilience (P.10-11; L.734-770).

Comment 6: I suggest access to healthcare and social participation are different concepts and therefore should be analysed and discussed separately. 

Response 6: Access to healthcare is indeed part of social participation as defined in the HDM-DCP (P.2; L.64-71). This paragraph refers to social participation and not engagement in social activities.  

Comment 7: Add a definition of social participation.

Response 7: A definition of social participation and the related constructs within the HDM-DCP (currents activities and social roles) was added on P.2; L. 64-69: “Social participation, defined as the total accomplishment of life habits, is influenced by the interaction between individual’s personal characteristics and their environment according to the Human Development Model – Disability Creation Process (HDM-DCP) [13]. There are categorized into two mains’ categories: currents activities (e.g., personal care and health, physical fitness and psychological well-being, housing) and social roles (e.g., interpersonal relationship, responsibility, recreation) [13].”.

Comment 8: Usually purposive sampling is used when conducting qualitative research - you are seeking people to interview that have experienced the phenomenon you are investigating - in this case people with SCI during the pandemic. Please refer to some qualitative textbooks eg Patton -  Qualitative research and evaluation methods. Creswell - Qualitative inquiry and research design.

Response 8: A purposive sample was indeed recruited from an ongoing randomized controlled trial in Canada, which initially used a convenience sampling approach. Action: The details of sampling have been modified and clarified on P.2; L. 87-90.

Comment 9: Can more information detail be provided about the professional background and expertise of the interviewer

Response 9: Details about the professional background and expertise of the interviewer have been added on P.3; L.259-260 and P.3-4; L.292-361.

Comment 10: Having reviewed this model, Social Roles are listed as: Responsibility, Interpersonal relationships, Community and spiritual life, Education, Employment, Recreation. I do not see any question specific to the roles - education, employment, recreation - see my earlier comments.

Response 10: We did not ask specific questions about each specific social role or life habit. Instead, we left questions open-ended so participants could express their experiences without being guided. (e.g., Tell me about your experiences with the restrictions, such as the difficulties, the good times, and strategies you have developed). One question specific to physical activity was asked given the nature of the RCT in which participants were involved.

Comment 11: Please provide more detail  about these RAs - what expertise, qualifications, professional backgrounds, supervision etc.

Response 11: Details about the two RAs were added on P. 3-4; L. 286-355.

Comment 12: More detail about these researchers needed - expertise, qualifications etc

Response 12: Details about researchers were added on P.4; L. 355-357.

Comment 13: Was there an iterative process? Was it a reflexive process?

Response 13: Details of the data analysis were added on P.3; L.275-284. A reference to Braun and Clarke was also added.

Comment 14: Themes do not emerge - but rather are identified. I suggest you refer to appropriate texts such as Braun and Clarke and other authors.

Response 14: The text has been modified on P.3; L. 365 as suggested and Braun and Clarke was added as a reference in the data analysis.

Comment 15: As per earlier comments, restrictions to health services is not generally viewed as a participation restriction, and is not consistent with the model you have selected. these are not participation restrictions. I suggest renaming this theme to something more reflective of the content.

Response 15: Access to health services, house cleaning and personal hygiene are defined as Current Activities within the  HDM-DCP on P.2; L.64-71, and is considered a factor of social participation. Therefore, restriction to health services is indeed a participation restriction.

Comment 16: barriers to what?more descriptive sub-theme name would be appropriate - barriers is very generic and apply to people with disabilities when there is no pandemic Please consider providing a name that relates specifically to the topic

Response 16: The theme 3.1.2 was renamed as suggested on P. 5; L. 428.

Comment 17: For me this this sub-theme name doesn't describe  the meaning or content of the theme. Your participants talked about lack of family contact perhaps that is the focus?

Response 17: The theme 3.1.3 was renamed as suggested on P. 6; L. 471.

Comment 18: Related to: “Nevertheless, participants reported being reassured to be able to see their loved ones outside (as mandated by the public health measures), even in winter: “It was fun because we could see each other outside. What makes that, it was really 234 reassuring and then that’s it, we really benefited more (Participant 6). While these comments are true they were true for everyone during the pandemic- is there deeper analysis regarding how the lock downs were specifically for people with SCI?

Response 18: We have added information to better contextualize the experience of people with SCI and their adaptation. For example, we have added in the discussion: “Help received from others, including help from family, friends, and community organizations, played a large role in the realization and satisfaction of life habits. Thus, while contact with loved ones was particularly important during the pandemic to mitigate perceived isolation for general population [25], it was even more critical for individuals with disabilities.” (P.9-10; L. 677-684).

Comment 19: Related to: “Everyone is forced to do what I'm forced to do all the time.” I think this is a very interesting point and one that can be examined further in the discussion.

Response 19: We have expanded on this point in the discussion on P.11; L.764-774.

Comment 20: Theme 3.2 Hopes: I am not clear how hopes describes this content which seems to be more about adaptation eg adapting to different ways of participating.

Response 20: The theme 3.2 was renamed as suggested on P.9; L.635.  

Comment 21: It is helpful to revisit the aim at the start of the discussion to provide context: The objective of this study was to explore the social participation of Canadians with SCI during the second wave of COVID-19 pandemic.

Response 21: The aims of the study was added to the discussion on P. 9; L.670-671.  

Comment 22: True, so I am surprised this does not come though more strongly in your themes/sub themes and descriptors

Response 22: Additional details were added in the results about social and family support in P.5; L.398-403. An additional reference was also added about the experiences and needs of informal caregivers. 

Comment 23: Agreed about technology use, but access to healthcare and engagement in social activities are two different issues and as such should be discussed separately

Response 23: Access to healthcare is indeed part of social participation as defined in the HDM-DCP (P.2; L.64-71). This paragraph refers to social participation and not engagement in social activities.

Comment 24: Be careful not to utilise quantitative  measures/statements such as "few" you can only comment on what your participants spoke of and cannot generalise this to numbers more widely

Response 24: We have made changes through the manuscript.

Comment 25: This was not clear to me until now. I think this is a great pity and really impacts on the quality of the analysis

Response 25: This limitation was better explained on P.11; L.776-796.

Comment 26: What do you mean by the lived experiences of people with SCI contributing to resilience? in what ways?

Response 26: This sentence was modified to show we are referring to the previous pre-pandemic lived experiences (P.11; L.800-802).

Comment 27: Review this final sentence.

Response 27: the final sentence was modified (P.11; L.802-804).  

The reviewer suggested many minor modifications to grammar and vocabulary that were annotated in the pdf. All suggestions were considered, and those pertinent were modified. In the cases where the suggestions were based on stylistic preferences, they may not have been incorporated. The pdf document was locked. The modifications are detailed below and shown as track changes in the word document.

Reviewer 3 Report

Comments and Suggestions for Authors

The aim of the study was to explore social participation of Canadians with SCI during the second wave of the COVID-19 pandemic using a qualitative approach to collect data from 18 individuals. The findings mention of participation restrictions, changes in habits, and uncertainty about the future. 

The strengths of the manuscript include its relevance to people with SCI  and issues arising from the pandemic, the use of semi-structured interview as an in-depth exploration, and clear presentation of the study findings. I appreciate the timeline figure for context and the presentation of the qualitative results. 

With researcher perception of participants reported experience playing a role in analyzing data, it would be nice to include a couple of sentences to describe the coders, such as their background and personal experience with SCI, philosophical assumptions, theoretical concepts underpinning their research focus, and even perhaps any potential political biases concerning the pandemic. These biases could also be noted if there were was a variation in experience across the two provinces. 

Another limitation to consider including is the convenience sampling from a physical activity trial, which may have resulted in more active individuals compared to less active. 

Overall the manuscript is well-organized and well-written. I believe with a few revisions, it will provide an impactful addition to the literature. 

Author Response

Thank you for reviewing our manuscript and taking the time to provide comments which we have addressed below.  

Comment 1: With researcher perception of participants reported experience playing a role in analyzing data, it would be nice to include a couple of sentences to describe the coders, such as their background and personal experience with SCI, philosophical assumptions, theoretical concepts underpinning their research focus, and even perhaps any potential political biases concerning the pandemic. These biases could also be noted if there were was a variation in experience across the two provinces. 

Response: Details about the two Ras and senior researchers were added on P.3-4; L. 292-361.

Comment 2: Another limitation to consider including is the convenience sampling from a physical activity trial, which may have resulted in more active individuals compared to less active. 

Response: This limitation was added on P.11; L.776-796.

Round 2

Reviewer 2 Report

Comments and Suggestions for Authors

Thank-you for addressing the suggestions made. This manuscript is now much improved and I have no further suggestions.