‘Finding what works for me’ – a qualitative study of factors influencing community gym participation for young adults with cerebral palsy

Abstract Purpose To understand the factors influencing participation in community-based gym exercise for young adults with cerebral palsy (CP). Methods A qualitative study using semi-structured interviews was conducted. Interviews were completed with 39 young adults with CP (15–30 years, GMFCS I–IV) following a peer-supported, gym-based exercise program called FitSkills. Results “Finding what works for me” was the overarching theme. Through their gym experiences, young adults with CP identified four interrelated main themes that influenced whether gym participation “worked” for them, or not: (i) psychological factors, (ii) a “social” participation context, (iii) organisational and logistical support, and (iv) cost. The social context of FitSkills was perceived to positively influence psychological health outcomes and attenuate perceived barriers to participation. Organisational support facilitated their initial attendance, while logistical effort and cost affected ongoing or future gym participation. Conclusions Social involvement plays a critical role in positive participation experiences in community exercise settings for young adults with CP. Clinicians supporting exercise participation for this group should prioritise intervention strategies that promote social engagement and mental wellbeing. Collaboration between clinicians, community leisure organisations, and funding bodies may be essential to overcome logistical and financial barriers during the transition to adulthood. Implications for rehabilitation The main factor influencing the attendance, involvement, and ongoing exercise preferences of young adults with cerebral palsy (CP) was the social context of the participation experience. Altering the social environment through peer-mentoring can facilitate participation in the gym. Young adults with CP consider mental wellbeing to be an important motivator and outcome of gym-based exercise participation. Mental wellbeing should be prioritised for health promotion for this group. Collaboration between recreation organisations, health services, clinicians, and consumers to address logistical and financial factors can facilitate positive physical activity participation experiences in community settings.


Introduction
Young people with cerebral palsy (CP) are typically less physically active than the general population [1]. Inactivity, and the conditions sequelae, place people with CP at higher risk of functional decline and developing metabolic and cardiovascular diseases [2]. Historically, physical activity promotion for this group has focused on physical health benefits and the potential to mitigate secondary health conditions such as heart disease, diabetes, and obesity [3]. Although physical health is important, emerging research suggests young people with physical disabilities may be motivated to participate in physical activity for mental wellbeing, social connection and fulfilment [4,5]. Friendship, social connectedness and social support are known facilitators of participation in physical activity for children with CP [6] and adults with physical disabilities [7].
During the transition to adulthood, young people with CP experience decreasing physical activity levels and increased risk of anxiety and depression compared to their typically developing peers [8]. This transition phase is a critical time for social development [9][10][11] and influences long-term health behaviours and mental wellbeing [10,12]. For young people with CP, this period often sees reduced participation in daily activities, less time spent with friends [11] and a decline in access to health and community services that facilitate physical activity participation (e.g., all abilities sporting options, social supports and government funding) [13].
In practice, a current challenge for clinicians is how best to support young adults with CP to participate in physical activity in their communities. There is increasing attention within the literature to identify universal barriers to physical activity for people with disabilities. For adults in particular, limited local opportunities, inappropriate physical environments, and negative social experiences are frequently reported as barriers to physical activity participation [6,7,14]. What is currently lacking for clinicians working in the field, is setting specific information to guide them in facilitating physical activity for young adults with CP. Executive difficulties relating to planning and learning are now considered to be a common part of the presentation for people with CP at all physical and cognitive classifications [15,16], so social or peer support may provide a mechanism for facilitating participation in physical activity.
The community gym is one setting which has been identified as a desired place for participation for those with disabilities [17]. Emerging evidence also suggests that the gym can be a safe and feasible space for exercising with a disability [17][18][19]; however, factors influencing participation in this setting for young adults with CP have yet to be explored in the literature. One exemplar program, FitSkills [20,21], seeks to facilitate gym participation for young people with disabilities through mediation of the social environment by providing social support from a peer-mentor. This study aims to understand the experiences of young people with CP in FitSkills, with a view to informing clinical practice and health promotion for young adults with CP wanting to participate in this setting.

Design
This qualitative study used an interpretive description approach [22]. Interpretive description facilitates answering questions relating to health experiences, knowledge, and practice. It utilises current literature to scaffold data interpretation and to apply the findings within clinical practice [22]. Ethics approval for this study was obtained from the La Trobe University Human Ethics Committee (HEC17-012).

Participants
This study was embedded within an implementation trial (FitSkills) investigating the feasibility of a community gym-based exercise program [20,21]. FitSkills is a 12-week, twice weekly, program where young people with disability (13-30 years) exercise at a community gym with a student mentor. Mentors were not personal trainers but exercise "buddies", providing individualised social support as required by the participants to exercise in the community gym setting; for example, social interaction, encouragement, providing accountability and facilitating interactions with staff and patrons. Exercise prescription was coordinated by qualified exercise professionals (physiotherapists and exercise physiologists) and individualised to participants' goals and abilities. During the trial, 123 young people with disability completed FitSkills with their mentor across 20 community gym sites in Melbourne, Australia [21].
This qualitative study focuses on the experiences of trial participants who were young adults with CP. Participants were eligible to be included in the current study if they were aged 15-30 years and had a primary diagnosis of CP, congenital brain abnormality consistent with CP, or a brain injury that occurred within the first 2 years of life [23]. Sixty-one young people who enrolled in the FitSkills trial met the above diagnostic criteria. Of these, 20 were excluded as they were under 15 years of age (n ¼ 14) or had withdrawn from the FitSkills intervention trial prior to attending the gym (n ¼ 6). The remaining eligible participants (n ¼ 41) were contacted by telephone and/or email by GM, who was not involved with delivering FitSkills, and invited to participate in the semistructured interviews. Participants were not excluded because of severe intellectual or communication difficulty. Where participants were unable to represent themselves in an interview (either verbally or via assistive technology), proxy interviews were sought with a parent or guardian who were asked to reflect and respond to questions from the perspective of the young adult they were representing.

Data collection
Data were collected through semi-structured interviews conducted between two and eight weeks post completion of the FitSkills intervention. Interview questions were formulated around the program elements, as well as acceptability, environment, outcomes, and sustainability. The interview guide (Supplementary Appendix 1) was pilot tested with three young adults who had completed FitSkills as a fee-for-service program but who were not eligible for this study. One researcher (GM; physiotherapist working with young adults with CP, female) completed 36 of the 39 interviews, with three completed by a research assistant (MM, psychologist, female) due to the primary interviewer (GM) being unavailable at the time the interviews were scheduled. Neither interviewer had a role in the design or delivery of the FitSkills intervention. Seventeen interviews were completed in private rooms at community leisure centres and libraries, and the remaining via video (n ¼ 6) or phone (n ¼ 16), to facilitate participants needs and preferences and due to COVID19 public health restrictions on face to face meetings. At their preference, participants could be supported by family or friends during the interview. Participants were informed of the interviewer's background and study aims before the interview started. Interviews were audiorecorded and lasted between 20 and 60 min. Following the interview, observations and reflections were recorded. Almost the entire eligible sample is represented in the study findings, with 39 of the 41 eligible FitSkills participants contributing interview data. All 39 participants were interviewed to allow them to share their experiences and add to the richness of the data. Data saturation was determined to be achieved after 22 interviews were completed as no new overarching themes were observed in the data of the remaining participants. As part of the iterative data analysis and collection design, negative cases were sought throughout the interviews, including after data saturation was considered to be achieved.

Data analysis
Interviews were transcribed verbatim by the first author (60%) and by a paid transcription service (40%), with transcripts then read and checked by the first author. Transcriptions were emailed to participants to allow them to review the interview (member checking). Fifteen participants responded and confirmed their transcripts was a true and accurate reflection of their thoughts. Three of these participants made minor clarifications to their transcripts to correct personal details including names of people, services or schools.
An inductive thematic analysis [24] was completed using a thematic networks approach [25] over three phases; Phase 1 analysis: Development of basic themes. First, data were coded independently by three authors (GM, CW, and NS) manually or using NVivo 12 software (QSR International, Doncaster, Australia). Codes emerged from the data and were not predefined. For example, "I suppose having someone else there, then people sort of look less at you" was initially coded to "self-conscious" and "positive impact of mentor". Following the first stage of coding, the authors discussed data interpretation until consensus on basic themes was reached. Within this phase, contributing data from proxy reports, different age groups (<18 years and >18 years), GMFCS level and gender were compared and contrasted to determine if differences existed; however, no major differences were noted.
Phase 2 analysis: Development of main themes. The second phase combined basic themes with similar meanings into main themes [25]. Using the family of participation related constructs (fPRC) framework [26], relationships between basic themes were explored. This framework was selected as it aligned with the emerging interactions between the person, context, and participation data within the basic themes. A two-page summary of the main themes were sent to 10 participants who expressed interest in reviewing the results (member checking). Four participants responded, confirming the findings were an accurate reflection of their experience.
Phase 3 analysis: Development of an overarching theme. An overarching theme, representing a principal metaphor of the data, was developed through interpretation of the main themes in collaborative meetings and through the member checking process.

Trustworthiness
Strategies used to ensure trustworthiness (credibility, transferability, dependability, and confirmability) [27] were embedded into the study design. Credibility was enhanced through triangulation by multiple analysts, peer review and member checking of transcripts and themes. Data were compared across participant with different characteristics (e.g., proxy versus young adult, under or over 18 years, GMFCS level, gender). Transferability was established through purposeful sampling, provision of an audit trail and documentation of rich, thick descriptions (Supplementary Appendix 2). Dependability was achieved by using a defined methodological approach, development of a protocol a priori, and seeking negative cases within concurrent data collection and analysis phases. A further 17 interviews were completed following data saturation with participants who had consented and wished to share their experiences. With no new themes emerging, this reinforced the dependability of the results. Maintenance of an audit trail and multiple data analysts also contributed to confirmability.

Results
Thirty-nine of 41 eligible FitSkills participants consented to participate (Table 1). One participant was unable to be contacted, and one declined, citing time constraints. Two participants were known to the interviewer (GM) from a previous clinical role. Twenty-four participants completed the interviews alone, eight had a family member present, as was their preference but the family member did not participate during the interviews, three participants had a family member present to facilitate communication in the interview due to moderate intellectual disability (n ¼ 1), communication classification CFCS III (n ¼ 1), or use of assistive devices (n ¼ 1). Four interviews were completed by a parent as proxy due to severe intellectual disability, communication classifications CFCS IV-V (n ¼ 3), and non-English speaking and CFCS III (n ¼ 1). When data from participants were compared across GMFCS level, gender, age (>18 or <18 years), and proxy versus young adult report, no major differences were found.

Overarching theme: finding what works for me
'Finding what works for me' was the overarching theme summarising the young adults' experiences in the gym. Participants overwhelmingly described a journey where a variety of factors were important to their exercise participation at different timepoints. Phase 1 analysis identified 12 basic themes, with relationships between these basic themes interpreted using the person-environment interactions of the fPRC (Figure 1). During phase 2 analysis, four main themes were developed: (i) psychological factors, (ii) a social context to participation, (iii) organisational and logistical support, and (iv) cost ( Figure 2). These were key elements described by young people with CP as influencing their participation in community gym environments and determining whether gym participation did or did not "work" for them.

Theme 1: psychological factors
Before FitSkills, fears about standing out were frequently reported. These related to self-consciousness about the way they moved, "people looking", or a sense of not belonging in the gym with "gym junkies". Participants' concerns were closely linked to beliefs about their capabilities, "doing the wrong thing" and injury or harm to existing impairments.
When you're physically disabled you definitely feel a bit more selfconscious about how you appear and how you represent relative to other people in the environment. Sean (M, 23 years, GMFCS I) Participants who did not report such worries had previous positive experiences in community gym settings. I had done something similar a couple of years prior … I didn't have any worries, I wasn't embarrassed or anything to work out. Victoria (F, 16 years, GMFCS I) 'Confidence' was the most widely reported benefit. For some, this related to developing a sense of belonging in the gym and feeling less concerned they would "stick out like a sore thumb". For others it related to confidence in their physical capabilities and a sense of achievement. These benefits often extended beyond the gym environment into daily life. Participants described being "happier" and "more motivated" to engage in other social and community settings such as school, work, or family life, and greater confidence in their physical performance.
It probably was a bit of a confidence boost to know that I could go to a gym and do things independently. It probably challenged that perception of myself a bit, in a good way. Brooke (F, 29 years, GMFCS I) The young adults also frequently reported mental health benefits, driven by their relationship with the student mentor and the social context of exercising. They discussed "feeling better" about themselves, and feeling more alert, energetic and enthusiastic for physical activity generally. Others described how physical activity provided opportunities for maintaining positive mental health into the future, as a way to relax, clear their head, or that improved sleep positively affected their mental wellbeing, which influenced their preferences and planning for ongoing physical activity. I just don't think exercise is a fun thing for me. I've never really found them enjoyable, no one does … then I just started, and I was like 'okay, this is not bad'. And then after a few [sessions] I was like, 'okay this is actually really good, it makes me feel better'. Megan (F, 17 years, GMFCS III)

Theme 2: social context of participation
The opportunity for social participation in a community setting sparked young peoples' interest in FitSkills. For many, FitSkills filled a "service gap" by providing an opportunity to get out of the house and engage with peers. The social context was highly valued by participants and differentiated FitSkills from their other physical activity experiences.
I never really get out much … so, going to the gym for the first time, outside of my comfort zone, I felt excited … that I'll be going out more and feel more comfortable with going out instead of being isolated from other people. Brett (M, 15 years, GMFCS II) Changing the context of the gym environment through the addition of a social element was also associated by participants with positive attendance, perceptions of the gym environment, and preferences for ongoing participation. The participant-mentor relationship, and its development over time, was crucial to participants' involvement in the gym, making exercise fun or, for some, "less boring". The social support was able to facilitate interactions within the gym environment and modulate other reported barriers relating to personal and logistical factors. Having a mentor created a sense of accountability and routine that set participants up for early success, while the ability to exercise and learn with peers facilitated belonging, motivation and persistence. The peer nature of the mentor relationship was contrasted by participants to "instructors" or "therapists" in the way it facilitated exploration and challenge of abilities through "learning together".
Having a gym buddy would motivate me again to join just because I really liked having that buddy there with me. Victoria (F, 16 years, GMFCS I) However, not all mentor experiences were positive. The development of a social connection was negatively impacted if the  Andrew  M  30  II  II  ----Education -mainstream  With family  Support person present  Ashley  F  17  II  I  ----Education -mainstream  With family  Support person present  Felix  M  17  I  I  Mild  --Y  Education -mainstream  With family  Support person assisted  Jessica  F  19  II  II  Moderate  -Y  Y  Day program  With family  Self  Kai  M  30  III  III  Mild  ---Education -special  With family  Proxy  Liam  M  15  I  I  Mild  -Y  -Education -special  With family  Support person present  Sarah  M  16  II  I  --- -: Condition not present Education -mainstream: attending a mainstream education setting (school or post school) with or without additional supports and services in place. Education -special: attending a specialist/exclusively disability education setting (school or post school). a All participants are represented with pseudonyms to protect their anonymity. b Living independently with or without a partner or house mates.
mentor was unreliable, difficult to contact, or inattentive during the sessions. Participants who had this experience reported feeling less engaged with fewer positive outcomes.
Some things that he did that probably wasn't the best thing … like be on his phone instead of actually paying attention to me. Jocelyn (F, 23 years, GMFCS III)

Theme 3: organisational and logistical support
Prior to FitSkills, the logistical effort of participation was described by participants and families as "difficult". This primarily related to hiring support workers, applying for funding, organising exercise prescription, locating a gym or organising transport. Most participants believed they needed specialised disability support and identified gaps in support relating to age, disability type, and lack of disability knowledge within community recreation services. Even participants with mild impairments said they desired individualised support for commencing physical activity because "we feel like we always do it by ourselves" -Vivian (F, 17

years, GMFCS II)
When I've tried to go to the gym, I've hired PTs and stuff and none of them know that much about cerebral palsy to actually be able to properly train you. Anna (F, 25 years, GMFCS II)  The disability knowledge and allied health oversight provided throughout the program facilitated the development of trust in FitSkills, while coordination of factors including mentor support and training, exercise prescription, gym location, and cost facilitated initial attendance.
Knowing that there would be someone there to guide you and support you just makes it a lot easier … just having the knowledge that you will have an environment that is OK for your disability. Ashley (F, 17 years, GMFCS III) Following participation in FitSkills, many young adults expressed interest in continuing gym-based exercise. However, they reflected on a practical need to weigh up the benefits experienced with logistical burdens. For many, this valuation was influenced by opportunities for social involvement.
I have to find the gym, I have to pay for it and stuff … to find me a support worker that's suitable, it's taking me ages to get it done. Jennifer (F, 17 years, GMFCS III)

Theme 4: cost
The majority of participants and their families considered cost "a big factor" for ongoing gym participation. Gym memberships were "a lot of money to fork out", particularly for those supporting themselves financially, or reliant on government income support. For all participants, value for money relative to frequency of attendance was important. With one to two sessions a week identified as the ideal frequency, paying for full memberships was perceived to be "unfair" or "wasted money". Where participants required multiple supports (e.g., support worker and transport) this was perceived as "paying double" while also increasing the organisational effort of attending a gym.
It adds up you know, even for someone working full time. I live out of home, I pay rent, it gets expensive. Sean (M, 23 years, GMFCS I)

Discussion
During the transition to adulthood, young people are developing their identity within society and experiencing increasing autonomy around participation and decision making [10]. For adults with disabilities, the community gym is a preferred exercise setting in the local community [17]. Through their community gym experiences, young adults with CP identified four main themes that determined if exercising in this setting "worked" for them; psychological factors, a social participation context, organisational and logistical support, and cost.
A novel finding of this study was that it captured a change in mental wellbeing, as described by young adults with CP, as a result of participation in a peer supported gym program (FitSkills). The participants identified mental health benefits as both a motivator for, and outcome of, physical activity participation in the community gym (including improved confidence, mood, and positive sense of self). This is an important finding for young adults with CP who are at increased risk of depression and anxiety [8]. Increasingly, physical activity participation is being found to improve mental wellbeing for people of all ages [28,29] and has been the focus of interventions within mental health fields [30,31]. Physical activity interventions for people with CP often centre on body structure and function goals [32] or maintaining physical function. Our findings suggest a need to reconsider how clinicians promote physical activity to young people, to align with a young person's participation and mental wellbeing priorities.
Changing the social environment through peer-mentoring was found to facilitate participation in the gym for young adults with CP, with engagement with the mentor closely linked to reporting of positive psychosocial outcomes. Young people with CP generally spend less time with friends and participate less frequently in daily activities [11]. Friends and peers are known to facilitate meaningful participation experiences for children and adolescents with CP [6,33], and this remains an important consideration for physical activity participation into adulthood. Increasingly, modification of environmental factors has been shown to facilitate attendance and involvement in community-based activities for those with CP [34,35]. Barriers and facilitators to physical activity are often presented as static entities, e.g., feelings of "standing out" would hinder participation or "a sense of belonging" would enable participation [7]. Our findings indicate that factors affecting participation in the gym are not fixed and can be influenced by changes to contextual elements of the exercise environment. For example, the introduction of a peer-mentor who can provide individualised social support dependent on the needs of the young adult. Additionally, positive social experiences appeared to modulate other factors related to logistics and the gym environment that have previously been reported as barriers [6,7,14,19]. To enhance engagement and ongoing physical activity behaviours for young adults with CP, the social context of the exercise environment should be prioritised and facilitated by clinicians to enhance attendance and involvement for young adults with CP. Collaboration with young people early in exercise planning to identify social preferences, prioritising these when seeking local opportunities, and working with recreation organisations to facilitate a range of socially inclusive physical activity experiences would allow young adults with CP to "find what works for me".
The financial and logistical burdens associated with gym participation were consistently raised as barriers to participation in this study. For many participants, financial considerations meant ongoing participation, outside of the FitSkills clinical trial, was not possible. Usually attributed to lower employment rates and lower disposable income of people with disabilities [36], financial barriers disproportionally affect access and prioritisation of preventative care, healthcare, equipment, and technology for people with disabilities [14,[37][38][39][40]. In Australia, the National Disability Insurance Scheme (NDIS) can provide financial assistance for some of the associated costs of gym attendance such as transport, support workers and therapists [41], however gym entry costs are typically not supported. For those who could afford the entry cost, managing the logistical effort of other funded supports was described by young people as a further disincentive to attend. The coordinated approach of FitSkills, including collaboration between academics, health professionals, and local recreation organisations, was important to facilitating attendance in regular gym exercise for our participants. This demonstrates that positive participation experience and outcomes can be achieved when environmental barriers are modified through organisational and logistical support. Considering the reduced access to disability specific supports young adults with CP experience as they transition to adult services [13], a co-ordinated, localised approach between relevant stakeholders (i.e., clinicians such as physiotherapists, funding agencies, support coordinators, community leisure facilities, and health services) has the potential to mitigate the financial and logistical burdens of gym participation.
A strength of this study was the application of the fPRC framework within the data analysis process. Exploring interactions between person, context, and the environment within the gym setting provides a framework for clinicians to interpret the thematic findings and the descriptions of the participants and apply these to their own work with young adults with CP. The consistency of findings, across a heterogeneous group reinforces the application of findings across young adults with CP.
A limitation of this study is that enrolment in the FitSkills implementation trial infers the participants' ability to overcome other known barriers to physical activity participation (e.g., time, motivation, family support, and transport) [6, 14,19]. These barriers should still be considered when applying the findings to individuals in clinical practice. In contrast to previous literature [7], the physical environment did not feature strongly within the study findings. This may reflect that many, but not all, participants had motor skills predominantly classified as GMFCS level I and II or that the gyms utilised had inclusive facilities and practices. The findings did indicate that participation in the community gym setting is possible for those with a GMFCS classification of III and IV. A strength of this study is the richness of the data and purposefully seeking to include the perspectives of all the young adults with CP who completed FitSkills including seeking negative cases, and proxy interviews to provide a voice to young adults with CP who had severe intellectual and communication difficulties. There is very little available literature relating to exercise participation for young adults with CP who have complex communication needs or concurrent intellectual disability. While their experiences are represented within this study, further research involving this specific cohort is advocated.
In summary, this paper is the first to understand the participation experiences of transition-age, young people with CP in community-based gym context. For this group, peer-supported gym-based exercise in the community motivates them to participate in physical activity and may contribute to positive psychosocial outcomes. Our findings provide a framework to begin targeting strategies for change to improve participation in the gym, a preferred place for exercise for young people with physical disabilities. For health and community professionals supporting young adults with CP to achieve their physical activity goals, recommendations include facilitating a social context of participation; a focus on mental health and wellbeing outcomes; and collaboration between relevant stakeholders to alleviate logistical and financial burdens to community participation.