The experiences of setting up a community peer support group that promotes the health and wellbeing of individuals with multiple sclerosis (MS)

Title: The experiences of setting up a community peer support group that promotes the health and wellbeing of individuals with multiple sclerosis (MS)

Martin, E., Soundy, A*.

*Corresponding author

Authors

1. Eleanor Martin

Address: School of Sport, Exercise and Rehabilitation, University of Birmingham, Birmingham, B15 2TT

Email: ESM669@student.bham.ac.uk

2. Andy Soundy

Address: School of Sport, Exercise and Rehabilitation, University of Birmingham, Birmingham, B15 2TT

Email: A.A.Soundy@bham.ac.uk

Conflict of interest: None declared.

Funding: None.

Acknowledgements:

Abstract

Objectives: To understand the experiences of a setting up a community physical activity (PA) support group that promotes the health and wellbeing of individuals with multiple sclerosis (MS)

Design: A hermeneutic phenomenological methodology with a subtle realist paradigm

Setting: In person at the University of Birmingham or via Skype.

Participants: A purposive sample of 6 individuals with MS (5 Female, 1 Male) was included. Eligibility criteria was a) attended previous PA ice breaker event, b) >18 years and c) >3 years since diagnosis

Intervention: Event bringing together individuals to discuss PA for newly diagnosed MS patients. Following this event, they chose to stay in contact and create their own support group.

Main outcome: Demographic details taken include age, gender, time since diagnosis and type of MS. The main outcome measure was a semi-structured interview with various sub-sections. Thematic analysis identified the main concepts and ideas from the interviews, and wider literature was integrated to enhance data reliability.

Results: Four major themes and nine sub themes arose from interviews, centred around individuals establishing a new social identity from group participation and being empowered to change. Group interaction is particularly significant as it occurs in a relaxed context, which is emphasised as a contrast to the clinical and disease focused healthcare environment. There are some barriers to joining, but the group has benefitted all individuals involved.

Conclusions: There is a need for policy and practice providers need to consider the value of peer support for individuals with MS.

Key words: Multiple Sclerosis; Physical Activity; Qualitative; Community; Peer; Support.

Introduction

Multiple Sclerosis (MS) is a chronic, autoimmune disease affecting the nervous system. It affects around 2.5 million people worldwide. Psychological and emotional distress following diagnosis is becoming more prevalent. For instance, the incidence of anxiety is between 24-41% and depression between 10-42% (Wood et al, 2012). Individuals often feel ashamed and embarrassed to admit their struggles, with this internalisation of worries contributing to further psychological distress (Giordano et al, 2011). Creating rehabilitation environments that aid mental well-being is essential (Mental Health Taskforce, 2016). Peer groups may be one way this is possible for individuals with MS (Embuldeniya et al, 2012). Prior to this study commencing, an initial PA event was set up in February 2018, in which individuals with MS were invited to talk about exercise rehabilitation and share their thoughts and feelings about promoting exercise for newly diagnosed patients. Following this ice-breaker event, the individuals set up their own community support group, with focus expanding beyond PA and rehabilitation and into wider holistic care.

Methods

2.1 Methodology

A subtle realist paradigm was identified using hermeneutic phenomenological methodology. The COREQ is used for reporting results (see supplementary file)

2.2 Ethics Approval

Ethics approval was obtained from the University of Birmingham; Ethics Number: ERN_18-0793.

2.3 Qualitative researchers

A series of semi-structured interviews were undertaken by AS and EM.

2.4 Participant selection and characteristics

A purposive sample of individuals was taken. Individuals were included if they attended the ice breaker event and excluded if they were less than 8 years old and less than 3 years from their diagnosis. The high levels of similarity of ideas and codes between participants meant that data was saturated enough to provide quality results (Saunders et al, 2017).

2.5 Setting and context

Interviews were conducted at a private location at the University of Birmingham or via Skype.

2.6 Procedures and Data collection

A single semi-structured interview was undertaken with all participants (see supplementary file). The interview was pilot tested.

2.7 Outcome Measures

The Fatigue Severity Scale (FSS), Extended Disability Status Scale (EDSS) and 12-Item Short Form Health Survey (SF-12) documented patient characteristics.

2.8 Data Analysis

A five-stage thematic analysis was undertaken. See the supplementary file.

2.9 Trustworthiness

The main strategies used for trustworthiness were blind analysis and investigator triangulation.

3.1 Results

Six patients consented to participate in this research study, 5 females and 1 male. Demographic details of participants are provided below (Table 1; using fictitious pseudonyms).

3.2 Expression of analysis

Four major themes and nine sub themes were identified (see supplementary file for full details)

3.2.1 Theme 1: The formation of social identity and personal roles within the group, developed through the growth of friendships.

For all individuals, the support group has expanded their social circle, enabling them to identify within a group. This is important given many have withdrawn from socialising as their disease has become more debilitating. Jane stated the impact her support has had on an individual within the group; ‘she’s not, I feel, doing enough exercise, she makes excuses about not doing exercise. And I’m just so chuffed that she’s now starting to do this class’. Forming close relationships has enabled individuals to be more open and honest, exploring their feelings and emotions to overcome difficulties.

3.2.2. Theme 2: Empowerment, namely through enhanced participation and increased psychological agency. This also explores the disempowerment many individuals frequently experience when interacting with HCP’s.

Connecting with peers and sharing of stories and experiences has inspired individuals to take more active involvement in their own personal care. They can also learn from and reflect on the actions of others within the group. Susan explains that, ‘the motivation of meeting up with other people and seeing what they are motivated to do, to keep themselves well…rub off effect on you’. Seeing others achieve has influenced the way individuals deal with their own limitations, and search for ways to overcome barriers. Jane argues, ‘I think it’s inspired me to carry on, so I started doing more’; this has motivated patients during difficult periods in the disease.

3.2.3. Theme 3: The group environment is very relaxed and utilises technology and online interaction to ensure support is always there. As the group has developed, discussions have expanded to encompass more holistic care.

The support group offers a supportive personal environment, where meetings have no agenda and are not specifically focused on MS. For Neil ‘it just seems to be people getting together, who all happen to have MS’. Group members also choose to meet up with others individually, for example for a coffee or a meal. This further demonstrates the value of physical connection with others who have MS. As the group has developed, a WhatsApp network was created, providing support and encouragement virtually. This has enabled individuals to continue to be open and honest about their struggles, which has reduced the internalisation of stress and worries. Susan explains that ‘one of the ladies sent a message on WhatsApp, she was having a bad day, and she just needed a virtual cuddle’. The choice of access was important, some valued just reading and listening to the messages.

Continuous interaction within the group helps participants become more comfortable questioning treatments and sharing bad experiences.

3.2.4 Theme 4: Psychological Readiness, exploring the importance of acceptance and readiness to join a support group, with considerations for groups within future practice.

Many emphasised that to identify within the group one must have accepted their MS. In the early stages of diagnosis, individuals explain that accessing support groups is not the focus, and they often experience high levels of emotional distress. Anna argues that support groups, ‘would be beneficial, but it’s got to be at the right time’. This emphasises that perhaps certain measures or further ice breaker events need to be put in place, as these could overcome these barriers and encourage individuals to set up or attend support groups. There appeared to be some degree of fear associated with attending the group, and concerns that seeing others more disabled and advanced in their MS condition would be incredibly demotivating.

Discussion

This study demonstrates the positive value that peer support can have for individuals with MS. The results emphasise the gaps in healthcare, where HCP’s cannot offer the same experiential understanding of MS, as such patients can become very disempowered following consultations. Peers can provide empathy and offer strategies to overcome this, inspiring individuals to change. The current study findings identified that a supportive social circle promotes normality and can ensure individuals no longer feel defined by their condition (Schneider and Young, 2010). Changes in character can enhance hope and self-worth (Thoits, 2011). Peers can offer more informal interactions, providing knowledge and information that empowers individuals and reduces reliance on HCP’s within practice (Bartlett and Coulson, 2011).

Implications

· This research has highlighted that peer support can offer a relaxed and informative social environment that could enhance mental well-being.

· The research also demonstrates that a support group can align with the NHS Five Year Forward View

· Peers have an enhanced understanding of the psychological distress associated with MS

Limitations

· Limited understanding of the benefits and role of peer support groups for MS individuals. Lack of heterogeneity with other studies

· Lack of consensus currently about how a peer group should be set up

· Small sample size.

· Impact of demographics such as gender and age are not been fully explored

Conclusion

Further research on the value and application of peer groups within clinical settings are needed.

References

1) Wood, B., van der Mei, I.A.F., Ponsonby, A.L., Pittas, F., Quinn, S., Dwyer, T., Lucas, R.M., and Taylor, B.V (2012), ‘Prevalence and concurrence of anxiety, depression and fatigue over time in multiple sclerosis’, Multiple Sclerosis Journal, 19(2), 217-224, doi: 10.1177/1352458512450351

2) Giordano, A., Granella, F., Lugaresi, A., Martinelli, V., Trojano, M., Confalonieri, P., Radice, D., Solari, A., and on behalf of the SIMS-Trial group (2011), ‘Anxiety and depression in multiple sclerosis patients around diagnosis’, Journal of the Neurological Sciences, 207, 86-91, doi; 10.1016/j.jns.2011.05.008

3) Mental Health Task Force to the National Health Service England (2016), ‘The five year forward view for mental health’, Mental Health Task Force UK. Department of Health England. Available from https://www.england.nhs.uk/wp-content/uploads/2016/02/Mental-Health-Taskforce-FYFV-final.pdf

4) Embuldeniya, G., Veinot, P., Bell, E., Bell, M., Nyhof-Young, J., Sale, J.E.M., and Britten, N (2013), ‘The experience and impact of chronic disease peer support interventions: A qualitative synthesis’, Patient Education and Counseling, 92, 3-12, doi: http://dx.doi.org/10.1016/j.pec.2013.02.002

5) Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., and Jinks, C (2018), ‘ Saturation in qualitative research: exploring its conceptualization and operationalization’, Quality and Quantity, 52(4), 1893–1907, doi: https://doi.org/10.1007/s11135-017-0574-8

6) Schneider, M., and Young, N (2010), ‘’So this is my new life’: A Qualitative Examination of Women Living with Multiple Sclerosis and the Coping Strategies They Use When Accessing Physical Activity’, Disability Studies Quarterly, 30(3/4), doi: http://dsq-sds.org/article/view/1269/1293

7) Schneider, M., and Young, N (2010), ‘’So this is my new life’: A Qualitative Examination of Women Living with Multiple Sclerosis and the Coping Strategies They Use When Accessing Physical Activity’, Disability Studies Quarterly, 30(3/4), doi: http://dsq-sds.org/article/view/1269/1293

8) Bartlett, Y.K., and Coulson, N.S (2011), ‘An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication’, Patient Education and Counseling, 83, 113-119, doi: 10.1016/j.pec.2010.05.029

Participant Pseudonym	Age	Gender (M/F)	Work Status	Type of MS	Years since diagnosis	SF12 QoL Score	Fatigue Severity Scale	Extended Disability Score
Jane	50	F	Full-time	RR	22	28	41	5.5-6.0
Neil	49	M	Full-time	PP	14	28	48	6.0
Susan	46	F	Part-time	RR	8	32	12	6.0
Penny	34	F	Part-time	RR	10	29	30	2.0
Carol	38	F	Retired	RR	28	34	31	1.0
Anna	27	F	Full- time	RR	3	30	35	1.0

Table 1- Demographic details of all participants

Supplementary File

The supplementary file is arranged as follows:

Appendix A

- The completed COREQ

Appendix B

The full evidence synthesis results

Appendix C

Previous tables of development with quotes from participants.

Appendix A: The COREQ 32 Item

Manuscript: The experiences of setting up a community peer support group that promotes the health and wellbeing of individuals with multiple sclerosis (MS)

Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist

Developed from:

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007. Volume 19, Number 6: pp. 349 – 357

No. Item	Guide questions/description	Detail
Domain 1: Research team and reﬂexivity
Personal Characteristics
1. Inter viewer/facilitator	Which author/s conducted the inter view or focus group?	A series of semi-structured interviews were undertaken by Dr A Soundy, white male aged 39 and student physiotherapist, EM, white female, 21.
2. Credentials	What were the researcher’s credentials? E.g. PhD, MD	AS -PhD
3. Occupation	What was their occupation at the time of the study?	EM - Student Physiotherapist AS - lecturer
4. Gender	Was the researcher male or female?	EM – Female AS - Male
5. Experience and training	What experience or training did the researcher have?	At the time of study EM was a student researcher with no previous qualitative experience. AS had fourteen years post-doctoral experience and past training in qualitative methods.
Relationship with participants
6. Relationship established	Was a relationship established prior to study commencement?	As this study followed on from a previous PA ice breaker event, AS had met all participants. However, they were only aware of his capacity as a researcher. AS had also met one of the individuals four times previously, to discuss research and grants. EM had met no participants prior to the study.
7. Participant knowledge of the interviewer	What did the participants know about the researcher? e.g. personal goals, reasons for doing the research	The participants only knew that their experiences were to be captured.
8. Interviewer characteristics	What characteristics were reported about the inter viewer/facilitator? e.g. Bias, assumptions, reasons and interests in the research topic	AS has published related articles and may be influenced by the focus and content of the articles. AS and EM may be influenced by working within the physiotherapy professional.

Domain 2: study design
Theoretical framework
9. Methodological orientation and Theory	What methodological orientation was stated to underpin the study? e.g. grounded theory, discourse analysis, ethnography, phenomenology, content analysis	A subtle realist paradigm with a hermeneutic phenomenological methodology
Participant selection
10. Sampling	How were participants selected? e.g. purposive, convenience, consecutive, snowball	Purposive
11. Method of approach	How were participants approached? e.g. face-to-face, telephone, mail, email	Face to face
12. Sample size	How many participants were in the study?	6
13. Non-participation	How many people refused to participate or dropped out? Reasons?	0
Setting
14. Setting of data collection	Where was the data collected? e.g. home, clinic, workplace	Workplace .
15. Presence of non-participants	Was anyone else present besides the participants and researchers?	No
16. Description of sample	What are the important characteristics of the sample? e.g. demographic data, date	Demographics are provided. See table 1 for full details.
Data collection
17. Interview guide	Were questions, prompts, guides provided by the authors? Was it pilot tested?	Yes a guide was used that was pilot tested.
18. Repeat interviews	Were repeat inter views carried out? If yes, how many?	No, inferred on page 7
19. Audio/visual recording	Did the research use audio or visual recording to collect the data?	Digital recording was used.
20. Field notes	Were ﬁeld notes made during and/or after the inter view or focus group?	No.
21. Duration	What was the duration of the inter views or focus group?	All interviews lasted over 30 minutes.
22. Data saturation	Was data saturation discussed?	Yes see section 2.4
23. Transcripts returned	Were transcripts returned to participants for comment and/or correction?	No
Domain 3: analysis and ﬁndings
Data analysis
24. Number of data coders	How many data coders coded the data?	2
25. Description of the coding tree	Did authors provide a description of the coding tree?	Yes – see supplementary file
26. Derivation of themes	Were themes identiﬁed in advance or derived from the data?	Data driven coding took place
27. Software	What software, if applicable, was used to manage the data?	No
28. Participant checking	Did participants provide feedback on the ﬁndings?	No
Reporting
29. Quotations presented	Were participant quotations presented to illustrate the themes/ﬁndings? Was each quotation identiﬁed? e.g. participant number	Yes see results and supplementary file
30. Data and ﬁndings consistent	Was there consistency between the data presented and the ﬁndings?	Yes, there was. See results and supplementary file.
31. Clarity of major themes	Were major themes clearly presented in the ﬁndings?	Yes. See results and supplementary file.
32. Clarity of minor themes	Is there a description of diverse cases or discussion of minor themes?	Yes. Critical consideration is given. See results and supplementary file.

Appendix B Evidence Synthesis

3.2.1 Theme 1: The formation of social identity and personal roles within the group, developed through the growth of friendships.

For all individuals, the support group has expanded their social circle, enabling them to identify within a group. This is important given many have withdrawn from socialising as their disease has become more debilitating. The extent of identification varies between individuals but does not appear to influence outcomes of satisfaction. Jane, who has had MS for the longest (22 years) appears to be the most active member, having taken on a more maternal role. She explains taking responsibility for the wellbeing of others when they are struggling. In interview, Jane celebrates the impact her support has had on an individual within the group who lacked motivation, ‘she’s not, I feel, doing enough exercise, she makes excuses about not doing exercise. And I’m just so chuffed that she’s now starting to do this class’.

It also appears that age works dualistically, given Anna, the youngest individual also exhibits the motivation to want to help others. She emphasises the enjoyment she obtains from, ‘offering myself up into that, helping not only myself but other sufferers in the future’. Anna continues to have a flourishing career and is of a younger generation, offering a modernistic perspective on care that motivates others. Perhaps individuals at more of a mid-point in their disease need to be identified and targeted to ensure they also actively participate in the group.

It appears there are various intersectional factors that influence motivation levels; gender and the type of MS appear to play the biggest role. Neil, the only male within the group and an individual with the more severe form of PP MS, explains that he takes a more passive role in meetings. He explains that, ‘If you look at group dynamics, I’m the one that sits quietly and listens, once the group’s formed, the direction’s going, then I’ll jump in’. It has taken Neil longer to accept his MS and integrate within a support group, demonstrating the potential influence gender can have in accepting help. Although this should be taken with caution given Neil is the only male present in the group. Despite these variations in involvement, there appear to be transitions occurring when individuals begin to interact with others within the group.

Given the group had been running for at least 6 months at the time of study, close friendships had formed. These have been enhanced by individuals exhibiting greater understanding of the struggles of MS. Anna explains, ‘knowing that support is there…if I’m having a flare of MS’ is beneficial. Forming close relationships has enabled individuals to be more open and honest, exploring their feelings and emotions to overcome difficulties. There is also greater recognition of small achievements, which further motivates and encourages participants to overcome the debilitating effects of MS. These achievements may not be as easily recognised by family members or HCP’s due to lack of personal experience. Susan clarifies this, ‘They get it, and I don’t need to explain what an achievement I feel that I’ve made by just because I’ve cooked a meal. So it is really helpful’.

Individuals also reflect on rejecting other national support networks, for example, the MS Society. Neil explains that these societies have a ‘one size fits all approach’ and are less personal, instead attempting a population health intervention. However, the reality of the burden of MS shows this is not applicable; MS is a continuously evolving disease, and as such this smaller support group is more flexible and can react to individuals continuing disease changes and provide encouragement in times of need.

3.2.2. Theme 2: Empowerment, namely through enhanced participation and increased psychological agency. This also explores the disempowerment many individuals frequently experience when interacting with HCP’s.

Individuals describe that they often conceal symptoms from family and HCP’s, fearing judgement and lack of understanding from non-MS sufferers, who do not experience the hardships associated with unpredictability of symptoms. However, personal connections and friendships within the group have encouraged individuals to admit struggles; they no longer feel embarrassed to use aids and equipment required to improve their level of functioning. Penny explains that, ‘otherwise I am quite a closed book, umm, quite private person that I don’t talk about it to others… it’s nice to have that group where I can open up a little more about it’. The group has inspired hope, with individuals being motivated to act on and overcome the stresses that MS can bring to their lives. The support group is very practical and economical, as it doesn’t require many resources to have an overall positive effect on quality of life. A good example of the effectiveness is found in Anna, who has now become a yoga instructor, inspired by connecting with others.

Enhanced empowerment comes from individuals no longer letting their MS control them. Neil has highlighted the significance of this to them, emphasising ‘that I am choosing how I am treated, I’m making the decisions’. In contrast, it appears that there is a lack of empowerment within the healthcare context when interacting with HCP’s. Even Jane, the most experienced participant explains that, ‘I’m a patient that’s been using this service for a long time now and it’s not patient centred. It’s always structured around what building is available…’. Individuals are receiving relevant information within the healthcare context, but not choosing to access it. Peers are dissipating these barriers, and empowering individuals to utilise the resources around them and influence change.

The group provides a supportive network that is continuously available, which individuals reflect is lacking in the clinical context. Penny explains that with professionals ‘you wouldn’t really phone them up and say, today I have decided to get a walking stick, and can you help me. Because they probably don’t have the time to do it.’. These relationships appear more clinical, with the focus being on MS and the disabling symptoms it brings.

3.2.3. Theme 3: The group environment is very relaxed and utilises technology and online interaction to ensure support is always there. As the group has developed, discussions have expanded to encompass more holistic care.

As the group has developed, a WhatsApp network has been created, providing support and encouragement virtually. This has enabled individuals to continue to be open and honest about their struggles, which has reduced the internalisation of stress and worries. Susan explains that ‘one of the ladies sent a message on WhatsApp, she was having a bad day, and she just needed a virtual cuddle’. This further demonstrates the value of interactions, where the required support is small but can offer significant hope and motivation. These are very simple to set up but offer a further platform of support that is very relaxed, as individuals can choose when and how much to access it. Carol argues that ‘I’ll read it , I’ll listen to it, urm, ….. but I, you know, I just don’t want to get involved with responding’.

Continuous interaction within the group also ensures individuals are up-to-date and knowledgeable about current advances in treatment. They are interacting with others and discussing relevant research enabling them to become a more ‘expert’ patient and exhibit greater choices over their treatment. Jane argues that it is ‘interesting seeing what kind of facilities are available for people with disabilities’. Many of the participants explain that, following group discussions they have increased the variety of exercise they have been utilising. For example, many are choosing to complete more yoga, Pilates and core stability interventions. The support group is working dualistically, empowering patients through knowledge but also giving them the confidence to act on information obtained, carrying out new activities without the fear of stigmatisation. This is evident when Susan explains ‘I’ve got a perching stool… I’ve got my mobility scooter. I’m not embarrassed to go out with my stick’.

Through discussion, participants have become more comfortable questioning treatments and sharing bad experiences. They gain validation for these and no longer feel isolated during periods of hardship. Neil explains, following his negative experience with certain drugs, ‘what I got from that, was knowing it wasn’t just me, I realised maybe I wasn’t the hopeless case I thought I was’. Peers can understand the struggles more than family members and HCP’s. They can also offer honest strategies that ensure individuals feel equipped to deal with negative experiences in the future. HCP’s may be unable to provide the same validation in the clinical context as they cannot experience the struggles themselves. Penny argues that ‘you know you have got someone to point questions at…. so it’s definitely, felt a bit, uplifting in a sense, so you are not on your own’.

As the group has developed, discussions have expanded beyond PA, and encompass diet, exercise, drugs and family. This is demonstrating a more holistic care approach, considering the individual’s wider environment. Neil explains that ‘disability doesn’t have to be the first thing to come out of your mouth, which is bizarre seeing as we all have the same diagnosis’. The support group has created a dialogue that encompasses all aspects of the disease and its impact, which may be lacking in traditional care. As such, the care within a support group doesn’t have to fit into a specific box but can be a flexible approach that suits all.

3.2.4 Theme 4: Psychological Readiness, exploring the importance of acceptance and readiness to join a support group, with considerations for groups within future practice.

The group appears to be very positive for the health and wellbeing of individuals. However, many emphasised that to identify within the group one must have accepted their MS. In the early stages of diagnosis, individuals explain that accessing support groups is not the focus, and they often experience high levels of emotional distress. Anna argues that support groups, ‘would be beneficial, but it’s got to be at the right time’. This emphasises that perhaps certain measures or further ice breaker events need to be put in place, as these could overcome these barriers and encourage individuals to set up or attend support groups.

There appeared to be some degree of fear associated with attending the group, and concerns that seeing others more disabled and advanced in their MS condition would be incredibly demotivating. This appeared more specific to Anna, an individual with earlier stage MS who explains that ‘my initial thought about going to the group, was, ….. oh god ….. how will I feel ….. being amongst ….. other people who have got disabilities from their MS?’. However, although this may be an issue, this is only one participant and she still benefitted from the group. If she can be brought in despite these fears due to her specific disease trajectory, then this shows how critical and promising support groups could be for the more reluctant, early stage MS individuals.

The group appears beneficial as it is patient led and adaptable, with individuals having the choice to attend; a stark contrast to the clinical context where they often feel pressured and accustomed to attend healthcare appointments. Penny argues ‘I think that is key, choice, the choice to connect, the choice to be part of something bigger’. The group has developed from the initial PA ice breaker event, and Neil argues that there is a ‘difference between groups organised by people, and groups organised by disabled people’. As such, introducing rehabilitation events, bringing patients together for a common purpose could be a very effective way of introducing individuals, and encourage them to continue to develop their own support group.

Although the group is patient driven, participants argue that occasional professional input and education would be of value. Carol explains ‘that would be good…very good because they’d be the experts’. Interacting with other MS patients has its educational benefits, but equally professional input can offer advice and information that individuals also perceive to be important. As such, this research does not undermine the value of HCP’s or critique them, as many participants still feel that they play an important role. Perhaps expert professional opinion and advice should be frequently offered in the relaxing and supportive group environment to ensure that the information is more effectively understood and valued. Therefore, an integrated care approach appears to be the solution, which this study points

Appendix 3 full synthesis tables

Theme	Subtheme	Example	Number of Participants
Friendship	Supportive of each other	P1- ‘it’s a support group, its empowering each other’ P2- ‘the friendship has been fantastic for me’ P3- helping others and ‘doing my bit towards’ P4- ‘feel its just a group you can trust I suppose’ P4- ‘evolved into a sort of friendship’ P5- ‘I know they’re there, and they know I’m there for them’ P5- found ‘proper friendship and it’s important to me’ P6- ‘it’s an amazing support network of people to lean on’	5
	Communicating	P1- ‘I’ve called out wattsapp group empowered’ P2- ‘you don’t have to be physically present’ P4- ‘started a wattsapp group so everyone can stay in contact’ P6- most communication ‘primarily wattsapp’ and been good	3
	Comforting	P2- ‘Knowing there’s people that are there’ P4- ‘uplifting in a sense, so you are not on your own’ P5- ‘well I think that I am the luckiest person in the group’ P6- ‘knowing that support is there…if I’m having a flare of MS’	3
Motivating	Inspired to want to do more activity	P1- ‘made me want to do more’ P2- ‘from a culture point of view, given me a kick up the backside’ P3- seeing what others do has a ‘rub off effect on you’ P4-‘ after the exercise research, indefinitely felt more empowered’ P5- ‘Yes, definitely. You should be more active. You should be more active’	5
	Helpful during setbacks	P1- ‘I’m not feeling great at the moment’ P6- ‘knowing that support is there…if I’m having a flare of MS’	1
	Empowering (more accepting of condition)	P1- ‘..it’s taken me 22 years to come out now and I feel like I’m one of those really like loud and proud people’ P2- ‘I’ve come out of my shell a little bit in terms of doing things’ P2- ‘I’ve taken ownership of my condition’ P3- accepted ‘this is a part of who I am now’ P3- ‘actually I can achieve things’ P4- ‘helped me to be more open about MS, to those who are experiencing it’ P6- ‘in some ways I feel more able than I maybe would have done’ P6- ‘ realised there was maybe something more I could be doing with the yoga, so actually now I’ve qualified as a yoga instructor’	4
Personal	Meet others with MS	P1- ‘I was fascinated to meet people with MS’ P2- ‘I feel as though I do have support from appropriate people’ P3-‘ meeting like minded people’ P3- ‘because they all got it’ P4- I was connecting with others who had that disease, because I hadn’t connected with anyone before’ P4- ‘it’s a level of understanding you can only get from someone who is suffering’ P6- ‘it’s a very different kind of relationship’	4
	Can share experiences	P1- ‘now I know everyone else is having similar experiences’ P3- ‘nice just to listen to other people’s experiences’ P5- ‘we’ve all got our tales to tell’ P6- ‘all from different walks of life’	3
`	Encompasses holistic care/feels normal	P1- ‘it should be about life’ P2- ‘the focus is on me as a person not me as a diagnosis’ P3- ‘I’m feeling less like an outsider because I feel like I belong to a group’ P3- ‘we’ve talked about normal things’ P4- ‘it’s a different relationship with a healthcare professional’ P5- part of a group but ‘not an MS group’ P6- ‘it doesn’t just focus too much around the exercise element, it’s more just a generic support thing’	5
	No agenda	P2- ‘it’s not a formal group’ P3- ‘no prescription’ P3- ‘doesn’t feel forced, doesn’t feel organised’ P4- ‘Freedom to say what you want in this group’ P5- discuss many things, not planned, relaxed	4
Informative	Network to promote different experiences	P1- ‘really important subject to find out about, to see what people thought’ P5- came to group ‘to share my experiences’ P6- ‘offering myself up into that, helping not only myself but other sufferers in the future’	2
`	Can share information about facilities/drugs/ treatment	P1- ‘Interesting seeing what kind of facilities are available for people with disabilities’ P4- ‘you can say hey guys I am looking into a walking stick, does anyone have an idea of a good brand’ P5- benefit from other people’s viewpoints’	3
	Educational	P2- ‘It’s an educational group’ P3- ‘there was never anything for me when I first started on this journey of MS’ P4- ‘why I went for the research’ P5- ‘the whole bunch is really into research’ P6- learn more about exercise ‘I do strongly understand that and exercise and MS can be positively linked’	4

TABLE 2

Theme	Subtheme	Example	Number of Participants
Friendship- connecting with others with MS in a way never done before	Supportive- provide encouragement and always there in times of need	P1- ‘she’s not, I feel, doing enough exercise, she makes excuses about not doing exercise. And I’m just so chuffed that she’s now starting to do this class’ P2- ‘just having someone to talk to who knows what I’m going through’ P3- ‘I could speak to people and get advice instantly’ P4- ‘started a wattsapp group so everyone can stay in contact’ P5- ‘I know they’re there, and they know I’m there for them’ P6- ‘knowing that support is there…if I’m having a flare of MS’	5
Empowering- taken more control over life, with increased confidence	More active- increased participation with exercise	P1- ‘So I think it’s inspired me to carry on so I started doing more’ P2- ‘from a culture point of view, given me a kick up the backside’ P3- ‘rub off effect on you’ P4-‘after the exercise research, I definitely felt more empowered’ P5- ‘Don’t let your….MS affect…. your ability…to be active’	5
	More acceptance- acknowledged condition and limitations but not let that hold them back	P1- ‘..it’s taken me 22 years to come out now and I feel like I’m one of those really like loud and proud people’ P2- ‘I’ve come out of my shell a little bit in terms of doing things’ P3- ‘this is a part of who I am now’ P4- ‘helped me to be more open about MS, to those who are experiencing it’ P6- ‘in some ways I feel more able than I maybe would have done’	4
Personal- developing meaningful relationships with individuals who have greater level of understanding of their struggles and life	Interactive- continuining support and understanding	P2- ‘it’s that non-professional, non-problem-focussed chat’ P3- ‘best part of it is that physical connection, meeting up with people’ P3- ‘one of the ladies sent a message on WhatsApp, she was having a bad day, and she just needed a virtual cuddle’ P4- ‘it’s a level of understanding you can only get from someone who is suffering’ P5- ‘we’ve all got our tales to tell…you know with the nature of the disease, it’s just so varied’ P6- ‘it’s a very different kind of relationship’	4
`	Normality – don’t feel judged or defined by their condition	P1- ‘we just couldn’t stop talking’ P2- ‘the focus is on me as a person not me as a diagnosis’ P3- ‘actually you’re normal…which is really, really important because...you feel like you have got a label on you quite a lot of the time’ P4- ‘it’s a different relationship with a healthcare professional’ P5- part of a group but ‘not an MS group’	5
Informative- gain knowledge and understanding through attendance	Share experiences- learn from others and no longer feel like an outsider	P1- ‘Interesting seeing what kind of facilities are available for people with disabilities’ P3- ‘taken some of her advice and actually it’s made a huge difference’ P5- came to group ‘to share my experiences’ P6- ‘offering myself up into that, helping not only myself but other sufferers in the future’	2
`	Educational- learn about new treatments and exercise	P1- ‘really important subject to find out about, to see what people thought’ P4- ‘you can say hey guys I am looking into a walking stick, does anyone have an idea of a good brand’ P5- benefit from other people’s viewpoints	3

TABLE 3

Theme	Subtheme	Example	Number of Participants
Friendship- connecting with others with MS in a way never done before	Supportive- provide encouragement and always there in times of need	P1- ‘she’s not, I feel, doing enough exercise, she makes excuses about not doing exercise. And I’m just so chuffed that she’s now starting to do this class’ P2- ‘just having someone to talk to who knows what I’m going through’ P3- ‘I could speak to people and get advice instantly’ P4- ‘started a wattsapp group so everyone can stay in contact’ P5- ‘I know they’re there, and they know I’m there for them’ P6- ‘knowing that support is there…if I’m having a flare of MS’	5
Empowering- taken more ownership of condition, feel more able and capable	Exercise participation- changes in attitudes, beliefs and behaviours with exercise and ability to complete it	P1- ‘So I think it’s inspired me to carry on so I started doing more’ P2- ‘..and now I think, just speaking to other people, yeah I think its going to be the firm push I need’ P3- ‘the motivation of meeting up with other people and seeing what they are motivated to do, to keep themselves well…rub off effect on you’ P4-‘after the exercise research…even if I didn’t take that option at the beginning…it doesn’t mean I cant do it now’ P5- ‘Don’t let your….MS affect…. your ability…to be active’	5
	Psychological adaptation- positive changes in social identity and embracing their condition	P1- ‘..it’s taken me 22 years to come out now and I feel like I’m one of those really like loud and proud people’ P2- ‘I’ve come out of my shell a little bit in terms of doing things’ P3- ‘this is a part of who I am now’ P4- ‘helped me to be more open about MS, to those who are experiencing it’ P6- ‘in some ways I feel more able than I maybe would have done’	4
Personal- developing meaningful relationships with individuals who have greater level of understanding of their struggles and life	Interactive- Spontaneous and instant connection and support whether it be in person or over social media, someone they can trust	P2- ‘it’s that non-professional, non-problem-focussed chat’ P3- ‘best part of it is that physical connection, meeting up with people’ P3- ‘one of the ladies sent a message on WhatsApp, she was having a bad day, and she just needed a virtual cuddle’ P4- ‘it’s a level of understanding you can only get from someone who is suffering’ P5- ‘we’ve all got our tales to tell…you know with the nature of the disease, it’s just so varied’ P6- ‘it’s a very different kind of relationship’	4
`	Unique relationships – Feel normal and has less judgement attached, with individuals having a greater understanding of others	P1- ‘we just couldn’t stop talking’ P2- ‘the focus is on me as a person not me as a diagnosis’ P3- ‘actually you’re normal…which is really, really important because...you feel like you have got a label on you quite a lot of the time’ P4- ‘it’s a different relationship with a healthcare professional’ P5- part of a group but ‘not an MS group’	5
Informative- learn from discussion with other individuals with MS, and feel more supported and comfortable addressing their lifestyle and making changes	Share experiences- act as a team and a unit, moving together and facing challenges and overcoming problems with another people’s support	P1- ‘Interesting seeing what kind of facilities are available for people with disabilities’ P3- ‘taken some of her advice and actually it’s made a huge difference’ P5- came to group ‘to share my experiences’ P6- ‘offering myself up into that, helping not only myself but other sufferers in the future’	2
`	Educational- a space where individuals feel safe and can try out new ideas and activities without feeling judged	P1- ‘really important subject to find out about, to see what people thought’ P4- ‘you can say hey guys I am looking into a walking stick, does anyone have an idea of a good brand’ P5- benefit from other people’s viewpoints	3

TABLE 4

Theme	Subtheme	Examples
Roles adopted, and relationships developed- formation of personal identity within the group, exploration of the benefits of the group on an individual level	Variation in role satisfaction - some individuals are there more for information and have less involvement in the group, but others find it has more an altruistic value gaining satisfaction from helping others as well as receiving encouragement in times of need	P1- ‘she’s not, I feel, doing enough exercise, she makes excuses about not doing exercise. And I’m just so chuffed that she’s now starting to do this class’ P2- ‘If you look at group dynamics, I’m the one that sits quietly and listens, once the group’s formed, the direction’s going, then I’ll jump in’ P3- ‘taken some of her advice and actually it’s made a huge difference’ P5- ‘It is good, it is fascinating, but at the same time I think, I don’t really want to, ….. I’ll read it , I’ll listen to it, urm, ….. but I, you know, I just don’t want to get involved with responding’ P6- ‘offering myself up into that, helping not only myself but other sufferers in the future’
	Friendships- finding perceived support and social identity since many lacked this network previously, and not feeling judged but rather comfortable	P2- ‘just having someone to talk to who knows what I’m going through’ P2- ‘so our circle of friends has closed in, and I do see this as a way of….. enlarging my circle of friends and so far that has certainly worked’ P3- ‘They get it, and I don’t need to explain what an achievement I feel that I’ve made by just because I’ve cooked a meal. So it is really helpful’ P5- ‘I know they’re there, and they know I’m there for them’ P6- ‘knowing that support is there…if I’m having a flare of MS’ P6- ‘as I didn’t have that before because as common as MS is I still don’t know anyone else…so its great to have actual local support network’
Empowerment - taken more ownership of condition, feel more able and capable	Development of autonomy- comparison with the group provides motivation and agency (energy to carry out tasks), but also enables realistic understanding of capabilities	P1- ‘So I think it’s inspired me to carry on so I started doing more’ P2- ‘..and now I think, just speaking to other people, yeah I think it’s going to be the firm push I need’ P2- ‘that I am choosing how I am treated, I’m making the decisions’ P3- ‘the motivation of meeting up with other people and seeing what they are motivated to do, to keep themselves well…rub off effect on you’ P3- ‘Meeting other people who can also tell me that it’s okay to not be okay, it’s been really, really helpful, because I’m the sort of character that will just keep going’ P4-‘after the exercise research…even if I didn’t take that option at the beginning…it doesn’t mean I cant do it now’ P5- ‘Don’t let your….MS affect…. your ability…to be active’
	Psychological adaptation- positive changes in mindset and how they feel about themselves, new changes in social identity and not being restricted to MS label	P1- ‘..it’s taken me 22 years to come out now and I feel like I’m one of those really like loud and proud people’ P2- ‘I’ve come out of my shell a little bit in terms of doing things’ P3- ‘this is a part of who I am now’ P4- ‘otherwise I am quite a closed book, umm, quite private person that I don’t talk about it to others… its nice to have that group where I can open up a little more about it’ P6- ‘in some ways I feel more able than I maybe would have done’
Significance of relationships- connecting with like-minded individuals who have greater understanding of struggles, but also feeling more relaxed and normal, with conversations not just focused on MS	Continuing interaction- Spontaneous and instant connection and support from people they trust whether it be in person or over social media	P1- ‘we just couldn’t stop talking’ P3- ‘best part of it is that physical connection, meeting up with people’ P3- ‘one of the ladies sent a message on WhatsApp, she was having a bad day, and she just needed a virtual cuddle’ P4- ‘it’s a level of understanding you can only get from someone who is suffering’ P5- ‘I think the group ….. is vital actually ….. vital ….. urm, ….. we can discuss so many, so many {-} things ….. there’s no ….. set plan ….. and …... yeah no set plan at all, which is good’
`	Unique and personal- the focus of the group and relationships is on the individual as a person, and not defined by their MS, which means relationships are separate to those with healthcare professionals	P2- ‘the focus is on me as a person not me as a diagnosis’ P2- ‘it just seems to be people getting together, who all happen to have MS, and even though I’m not stupid, it is a criteria you have to have MS to be in this group, it doesn’t seem to be the driving factor’ P3- ‘actually you’re normal…which is really, really important because...you feel like you have got a label on you quite a lot of the time’ P4- ‘it’s a different relationship with a healthcare professional’ P5- part of a group but ‘not an MS group’ P6- ‘it’s a very different kind of relationship’
Informative- learn from discussion with other individuals with MS, and feel more supported and comfortable addressing their lifestyle and making changes	Share experiences- group is created in a context that others can relate to, giving and understanding others experiences to move forward and overcome challenges together	P1- ‘Interesting seeing what kind of facilities are available for people with disabilities’ P3- ‘I could speak to somebody and get advice instantly, from somebody else who had experienced it.’ P4- ‘everyone has been through something, so, everyone can discuss what about this, has anyone experienced that, does anyone know what this is’ P4- ‘you can say hey guys I am looking into a walking stick, does anyone have an idea of a good brand’ P5- ‘we’ve all got {-} our tales to tell, ….. you know, with the nature of the disease, it’s just so varied’ P6- ‘we are all from different walks of life so we’ve all got something to offer with us’
`	Educational- comparison of experiences, that have extended beyond physical activity and includes negative experiences which gives an understanding of what to expect or things worth considering	P1- ‘really important subject to find out about, to see what people thought’ P2- ‘people are asking questions like have you tried this drug….and what I got from that, was knowing it wasn’t just me, I realised maybe I wasn’t the hopeless case I thought I was, it’s happening to other people.’ P4- ‘you know you have got someone to point questions at…. so its definitely, felt a bit, uplifting in a sense, so you are not on your own, with it because everyone has been through it or is going through it’ P5- ‘you can benefit from other people’s viewpoints, and I say make you more understanding’ P6- ‘it’s a lot more generic so it doesn’t just focus too much around the exercise element it’s more just a generic support thing nowadays’

TABLE 5

Theme	Subtheme	Examples
Social Identity- establishment of roles within the group and feeling part of a mutual friendship	Variation in roles adopted- degree of altruistic value with individuals coming to the group to offer something and support others. Whereas others take a more passive role and are there to gain information and have less involvement. However, no judgement for the variability of personal role established	P1- ‘she’s not, I feel, doing enough exercise, she makes excuses about not doing exercise. And I’m just so chuffed that she’s now starting to do this class’ P2- ‘If you look at group dynamics, I’m the one that sits quietly and listens, once the group’s formed, the direction’s going, then I’ll jump in’ P3- ‘taken some of her advice and actually it’s made a huge difference’ P5- ‘It is good, it is fascinating, but at the same time I think, I don’t really want to, ….. I’ll read it , I’ll listen to it, urm, ….. but I, you know, I just don’t want to get involved with responding’ P6- ‘offering myself up into that, helping not only myself but other sufferers in the future’
	Friendships- finding perceived support, especially during more difficult periods, since many lacked this network previously, and not feeling judged but rather comfortable. The friendships have improved personal hope and motivation.	P2- ‘just having someone to talk to who knows what I’m going through’ P2- ‘so our circle of friends has closed in, and I do see this as a way of….. enlarging my circle of friends and so far that has certainly worked’ P3- ‘They get it, and I don’t need to explain what an achievement I feel that I’ve made by just because I’ve cooked a meal. So it is really helpful’ P5- ‘I know they’re there, and they know I’m there for them’ P6- ‘knowing that support is there…if I’m having a flare of MS’ P6- ‘as I didn’t have that before because as common as MS is I still don’t know anyone else…so its great to have actual local support network’
Empowerment- variety of mechanisms of empowerment, with positive empowerment encompassing greater achievements and more participants no longer define themselves by their diagnosis. This level of positive empowerment reflects the disempowerment from healthcare professional and previous interactions individuals experienced.	Positive empowerment- comparison with the group provides motivation and agency to have greater involvement in own decision making and treatment. Also reflects individuals defining themselves more positively, instead of being limited to their MS condition	P1- ‘So I think it’s inspired me to carry on so I started doing more’ P1- ‘..it’s taken me 22 years to come out now and I feel like I’m one of those really like loud and proud people’ P2- ‘..and now I think, just speaking to other people, yeah I think it’s going to be the firm push I need’ P2- ‘that I am choosing how I am treated, I’m making the decisions’ P3- ‘the motivation of meeting up with other people and seeing what they are motivated to do, to keep themselves well…rub off effect on you’ P3- ‘Meeting other people who can also tell me that it’s okay to not be okay, it’s been really, really helpful, because I’m the sort of character that will just keep going’ P3- ‘this is a part of who I am now’ P4- ‘otherwise I am quite a closed book, umm, quite private person that I don’t talk about it to others… its nice to have that group where I can open up a little more about it’ P5- ‘Don’t let your….MS affect…. your ability…to be active’ P6- ‘in some ways I feel more able than I maybe would have done’
	Disempowerment- previous interaction with healthcare professionals have been less interactive and continuous, which explained the lack of empowerment coming from these meetings and the differences in empowerment from connecting with others with MS	P1- ‘I’m a patient that’s been using this service for a long time now and it’s not patient centred. It’s always structured around what building is available…’ P3- ‘you go to your MS nurse, or there’s a poster on the wall in the hospital and you’re just given a leaflet or something’ P4- ‘it’s a different relationship with a healthcare professional’ P4- ‘you wouldn’t really phone them up and say, today I have decided to get a walking stick and can you help me. Because they probably don’t have the time to do it..’ P6- ‘it’s a very different kind of relationship’
Group interaction- encompasses how the group continuously communicates, where interactions take place and the significance of communication and relationships	Communication via a social app- Spontaneous and instant connection and support from people they trust over social media. Individuals are there during difficult times, with there being no judgement. Continuous interaction can prevent individuals feeling isolated	P1- ‘we just couldn’t stop talking’ P3- ‘one of the ladies sent a message on WhatsApp, she was having a bad day, and she just needed a virtual cuddle’ P4- ‘it’s a level of understanding you can only get from someone who is suffering’ P5- ‘I think the group ….. is vital actually ….. vital ….. urm, ….. we can discuss so many, so many {-} things ….. there’s no ….. set plan ….. and …... yeah no set plan at all, which is good’
`	Context of Interaction- a very relaxed and personal environment, whether it involves meeting up for a meal or coffee with certain individuals or meeting up in a group context it is also beneficial and enables exploration of personal identity and feelings.	P1- And then we’re going to an outing to meeting up on a Sunday in a couple of weeks’ time, for Sunday lunch P2- ‘the focus is on me as a person not me as a diagnosis’ P2- ‘it just seems to be people getting together, who all happen to have MS, and even though I’m not stupid, it is a criteria you have to have MS to be in this group, it doesn’t seem to be the driving factor’ P3- ‘best part of it is that physical connection, meeting up with people’ P5- part of a group but ‘not an MS group’ P6- ‘but I have met up with [other group member] for coffee last week just in Brindley Place on my lunch hour’ P6- ‘so you sort of meet up as a group but you can meet up individually’
	Educational- interacting with others with MS generates more understanding and enables greater exploration into various treatments, many of which have expanded beyond physical activity discussion. Discussion also explores negative experiences.	P1- ‘Interesting seeing what kind of facilities are available for people with disabilities’ P1- ‘really important subject to find out about, to see what people thought’ P2- ‘my main focus isn’t so much the question of exercise, it’s the question of diet. And I’m going to be talking to other people about their diet and how that’s affected them’ P2- ‘people are asking questions like have you tried this drug….and what I got from that, was knowing it wasn’t just me, I realised maybe I wasn’t the hopeless case I thought I was, it’s happening to other people.’ P4- ‘you can say hey guys I am looking into a walking stick, does anyone have an idea of a good brand’ P4- ‘you know you have got someone to point questions at…. so its definitely, felt a bit, uplifting in a sense, so you are not on your own, with it because everyone has been through it or is going through it’ P5- ‘you can benefit from other people’s viewpoints, and I say make you more understanding’ P6- ‘we are all from different walks of life so we’ve all got something to offer with us’ P6- ‘it’s a lot more generic so it doesn’t just focus too much around the exercise element it’s more just a generic support thing nowadays’
Psychological readiness for the group- acceptance and readiness to want to be involved in a support group play a huge role in its success. Need to be considered within future practice	Acceptance- need to understand the MS condition, and know about its unpredictability, which perhaps means not offering the group to newly diagnosed individuals, as they may not gain the most benefit from the groups	P1- ‘didn’t want to meet anyone with MS before’ P2- ‘when I was newly diagnosed, I would’ve told you to sod off if you approached me’ P4- initial diagnosis ‘you maybe aren’t thinking about the exercise element’ P4- need to ‘know about it’s unpredictability’ P4-‘see where that develops, rather than straight into a support group’ P5- ‘mentally you have to be…a particular time in your condition’ P5- ‘my initial thought about going to the group, was, ….. oh god ….. how will I feel ….. being amongst ….. other people who have got disabilities from their MS’ P6- ‘I think it would be beneficial, but it’s got to be at the right time’ P6- seeing those more advanced ‘it can be a little bit frightening thinking they are further along and that is where my illness will take me’
	Having the group offered as a choice- needs to be led by MS individuals in order to flourish, with occasional professional input providing extra education	P2- ‘never be professional led’ but professional input ‘Well I think that would be good occasionally’ P3- ‘it has to be individual led’ P4- ‘that is key, choice’ P5- ‘broadcasting the fact that.. there is contact if you want it’ P5- occasional professional support ‘‘that would be good…very good because they’d be the experts’ P6- ‘so that you’ve got a choice to go to them’