A co-designed mixed methods study on community-based gym exercise for non-ambulant adults with childhood onset disability

Abstract

Purpose

Explore community-based gym exercise for non-ambulant adults with childhood-onset disability.

Materials and methods

Non-ambulant adults with childhood-onset disability participated in four, weekly gym sessions co-facilitated by physiotherapists and exercise professionals. Practicalities of participating in the sessions were recorded via uptake and attrition, weekly surveys, and focus groups. Perspectives of those who designed/delivered the study were gathered via weekly debrief meetings. Quantitative data were analysed descriptively, qualitative data were analysed thematically.

Results

Ten non-ambulant adults with childhood-onset disability participated; 70% completed all exercise sessions. Focus groups identified three themes. “I wouldn’t be able to exercise…there’s no option for a community-based setting” described the lack of opportunities for exercise in gyms. “You don’t realise the benefit of coming here” highlighted benefits of exercise. “We can do better” had two sub-themes: problem solving and ingredients for community-based gym exercise. Weekly feedback and debrief meetings identified practicalities related to equipment, exercises, and collaborative working between facilitators.

Conclusions

Whilst there is an interest in community-based gym exercise for non-ambulant adults with childhood-onset disability, there remains a lack of inclusive gyms. Co-design of inclusive gym guidelines and condition-specific physical activity referral scheme may enhance opportunities for participation in gym exercise for adults with childhood-onset disability.

IMPLICATIONS FOR REHABILITATION

• Adults with non-ambulant childhood-onset disability want to access gyms to self-manage their condition.

• Accessible facilities and provision of dignified toileting would reduce the barriers to participation in community-based gym exercise for non-ambulant adults with childhood-onset disability.

• Specialist rehabilitation staff and support are necessary to facilitate participation in community-based gym exercise by non-ambulant adults with childhood-onset disability.

Keywords:

• Exercise
• gym
• participation
• adults
• childhood onset disability

Introduction

The number of adults with disability is rising globally [1]. Furthermore, most children with childhood onset disability transition from paediatric to adult services [2,3]. Adults with disability participate in less physical activity than the general population [4–6] and they are subsequently at higher risk of developing chronic conditions [7–10]. Therefore, current physical activity guidelines recommend that all adults, including those with disability, take part in regular physical activity to reduce the risk of developing chronic conditions, maintain physical and mental health, and enhance quality of life [1].

In addition, recent research has highlighted the unmet health service needs for this population, particularly related to physiotherapy [11]. Facilitating adults with disability to exercise in community settings helps to promote self-management of their condition and may subsequently reduce their needs for healthcare services, in addition to reducing long-term health risks and slowing deterioration in mobility [12–14].

Whilst gyms may be used to support non-ambulant adults with childhood-onset disability to participate in physical activity and exercise, previous research has identified common barriers including inaccessible environment and equipment [15,16], lack of support from peers [17–19] and specialist staff [20–22], and negative societal attitudes [15,19,23]. Furthermore, previous research in this population has primarily focused on children [8,24–26] and ambulant adults [8,27–31]. However, those with non-ambulant childhood-onset disability are less physically active than their ambulant counterparts [32,33] and have less opportunities to participate in community-based physical activity and exercise [30,31]. Therefore, this study aimed to explore experiences of community-based gym exercise for non-ambulant adults with childhood-onset disability through participation in supervised exercise sessions in a gym.

Study objectives

The current study addressed the following objectives:

1. Explore the practicalities of participating in community-based gym exercise through uptake, attrition and perspectives of non-ambulant adults with childhood-onset disability.

2. Explore the practicalities of community-based gym exercise for non-ambulant adults with childhood-onset disability from the perspectives of those who designed and delivered the study.

Materials and methods

Ethical approval

Ethical approval was obtained from Ulster University’s Research Ethics Committee (REC/22/0046).

Study design and patient and public involvement (PPI)

A convergent parallel mixed methods approach was employed. This study was co-designed by key stakeholders including adults with lived experience of non-ambulant childhood-onset disability, exercise professionals and physiotherapists. The lead author (KMC) has an established relationship with Mae Murray Foundation, a lived experience and member-led organisation striving for inclusion of those who experience social exclusion. Mae Murray Foundation members reported ongoing lack of opportunities to attend community gyms. Therefore, stakeholders included a young adult with childhood-onset disability, their parent (AC) and Chief Executive Officer from Mae Murray Foundation who has lived experience of family members with disability, and two exercise professionals with an interest in adaptive and inclusive exercise who were known to a member of the research team (KP). The research team had several discussions with the stakeholders via face-to-face and online meetings to plan the study. As a result, several pre-emptive measures were put in place to facilitate participation in the exercise sessions (Table 1).

Table 1. Pre-emptive measures by stakeholder group.

Stakeholder group	Issues identified	Pre-emptive measures
Adults /carers of adults with lived experience	Need for: dignified toileting facilities, potential for personal care assistance, accessible parking, safe entry to and exit from gym, devices to enable participants to grip gym equipment.	Hired portable toilets to Changing Places standards. Paid personal support staff to assist with personal care when required. Blocked off parking near gym entrance/exit. Safety bollard inserted at entrance/exit. Completed risk assessment to include emergency evacuation procedures. Purchased grip assist devices.
Exercise professionals	Reduced confidence and training specific to non-ambulant adults with childhood onset disability, maintain gym insurance.	Exercise sessions planned by physiotherapists experienced in working with non-ambulant adults with childhood-onset disability. Exercise sessions led by experienced physiotherapists and co-facilitated by exercise professionals. Participants completed Physical Activity Readiness Questionnaire (PAR-Q) and asked to gain written agreement from their GP to participate in the study. Participants signed gym waiver prior to first exercise session.
Physiotherapists	Need to identify: past exercise experiences and functional abilities of participants, gym equipment.	Induction questionnaire completed with participants via telephone/video conferencing in advance of first exercise session. Identified and purchased adaptive and specialised gym equipment to meet the needs of all abilities.

Participants and recruitment

We aimed to recruit 12 non-ambulant adults, aged 18 years or older diagnosed with a childhood-onset disability. Adults with moderate-severe cognitive impairment (by parent/caregiver report) without capacity for decision making on personal safety and those unable to commit to the activities associated with the study were not eligible to participate.

Participants were recruited using an information flyer which was disseminated via online social media platforms, including Facebook and Twitter, over a six-week period (July-August 2022). Relevant academic, community and voluntary sector organisations were also asked to distribute the flyer via their networks. Potential participants contacted the research team to discuss eligibility. Eligible adults were sent an introduction letter and participant information leaflet via post or email. After a two-week “cool-down” period, the research team contacted eligible adults to answer any questions, and then emailed (1) the link to an online consent form hosted in Qualtrics (Qualtrics, Provo, UT), (2) an electronic Physical Activity Readiness Questionnaire (PAR-Q) [34], and (3) an electronic copy of the waiver for the gym where the exercises sessions were held. After completion of these documents, participants were sent a letter confirming the pre-agreed date and time of their first exercise session. Participants were informed in advance that travel expenses incurred due to participation in the study would be reimbursed.

Procedure

Consented participants were invited to attend group exercise sessions face-to-face in a privately owned community gym, once per week for four consecutive weeks. The gym was selected due to ongoing relationship with the research team, the large floor space and ability to easily move and rearrange gym equipment and machines. Prior to the first session, each participant completed a short interview via telephone/video conferencing with a member of the research team to establish their previous exercise experiences and functional abilities. This information was used by the research physiotherapists (KMC, KP, CMF) to develop the first exercise session, individually tailor all exercises for each participant and identify any potential safety concerns. Subsequent exercise sessions were iteratively developed by the research physiotherapists based on weekly feedback from participants and those who designed and delivered the study (see Data collection and analysis).

Each exercise session lasted approximately one hour and started with a warm-up. This was followed by three to four blocks of adapted exercises based on the nine components of fitness including exercises targeting strength, power, agility, balance, flexibility, muscle endurance, cardiovascular endurance, strength endurance and coordination [35]. Sessions ended with a cool-down. All sessions were led by a research physiotherapist experienced in working with adults with neurological conditions, co-facilitated by an exercise professional (qualified Level 3 Personal Trainer) and supported by personal support staff.

At the beginning of each exercise session, participants were reminded that exercise can cause temporary muscle soreness for two to three days. The research physiotherapist leading the sessions asked the group if they experienced any soreness at the start of the subsequent session. In addition, Mae Murray Foundation risk assessment and incident processes were followed, with any incidents requiring a formal reporting process. An example exercise session is provided in Supplementary Appendix 1 and completed TIDieR checklist [36] can be found in Supplementary Appendix 2.

Data collection and analysis

Quantitative and qualitative data were collected to achieve the study’s objectives. Quantitative and qualitative data were analysed independently, and results were then integrated.

Study objective 1: practicalities of community-based gym exercise through uptake, attrition, and perspectives of adults with childhood-onset disability

The research team recorded uptake and attrition of participants in a study log that was designed a priori. These data were analysed descriptively in Microsoft Excel. Participants’ perspectives were established via weekly surveys and focus group discussions. Weekly surveys were completed by participants after the first three exercise sessions. Surveys contained one closed question rated on a 10-point Likert scale, and five open-ended questions (Supplementary Appendix 3). They were completed on paper or online depending on participant preference. Quantitative data were analysed using descriptive statistics in Microsoft Excel whilst qualitative data underwent content analysis.

Immediately after the fourth exercise sessions, focus groups discussions were facilitated by a trained researcher who was not involved in delivering the exercise sessions (JM). Focus groups were held face-to-face in a private room of the gym facility. They were audio-recorded and conducted using an a priori topic guide developed by the research team with consideration of the International Classification Functioning, Disability and Health [37]. Focus groups were transcribed verbatim. Summaries of focus groups were drafted and emailed to participants for member checking; four participants responded confirming the summaries were a true and accurate reflection of discussions. Data then underwent thematic analysis [38] using a deductive approach according to the topic guide. Two researchers (KMC and KP) independently listened to the focus groups and read the transcripts before independently coding the data. They then collectively discussed codes, collapsing those with similar concepts to form themes. These themes were discussed with the rest of the research team to reach consensus on final themes.

Study objective 2: practicalities of community-based gym exercise from the perspectives of those who designed and delivered the study

Immediately after each exercise session, a weekly debrief meeting was held with all staff involved in the design and delivery of the session, including research physiotherapists, exercise professionals and personal support staff. These meetings were facilitated by the research physiotherapists (KMC and KP) and provided an opportunity for all staff involved to discuss the delivery of the session. At each weekly debrief meeting, staff were asked to report any adverse events. Written notes from weekly debrief meetings underwent content analysis.

Results

Participant characteristics are presented, followed by results pertinent to each study objective. Practicalities of community-based exercise through uptake, attrition, and perspectives of adults with childhood-onset disability are described by means of data from study recruitment logs, and weekly feedback surveys and focus group discussions with participants. Practicalities of community-based exercise from the perspectives of those who designed and delivered the study are presented via data from weekly debrief meetings with staff.

Participants

Ten adults aged 18-44 years (mean = 28.40, SD = 7.81) with non-ambulant childhood-onset disability were recruited to the study (Figure 1). Table 2 provides details on participant characteristics.

Figure 1. Recruitment flow diagram.

Stage 1 flow diagram reads potential participants contacted research team for screening n = 22. Stage 2 flow diagram box 1 reads eligible to take part & information pack sent n = 14. Box 2 reads not eligible n = 8, Reasons for ineligibility: Not a full-time wheelchair user n = 6, Not diagnosed with childhood-onset disability n = 2, Unable to attend scheduled exercise sessions n = 4. Stage 3 flow diagram reads recruited n = 10. Stage 4 diagram reads retained n = 10.

Table 2. Participant characteristics.

ID	Age	Sex	Diagnosis	GMFCS	Exercise experience within past 6 months	Therapy/medical care past 6 months	Level of independence	Other medical conditions	Interview
101	34	Female	Spastic quadriplegic CP	IV	Swimming x2/week; home exercise programme	3 blocks of 10 days in-patient rehab; physiotherapy x1/week	Transfers: independent sit-stand, chair-chair, chair-floor not completed	Osteoporosis	Independent
102	44	Female	Spastic quadriplegic CP	IV	None	3 physiotherapy sessions/6 months	Transfers: independent sit-stand, chair-chair, chair-floor not completed	Osteoporosis	Independent
103	28	Female	Spastic diplegic CP	IV	Council gym to use hand bike, row erg, recumbent bike; wheelchair basketball	None	Transfers: all independent	None	Independent
104	23	Female	Dystonic quadriplegic CP	IV	Walker x2/week; home gym/pilates x2/week; x2 hydro sessions with carer	None	Transfers: all with support of x1 person	None	Carer proxy
111	32	Female	Spastic diplegic CP	IV	Occasional swimming; aqua aerobics x2/week; walker x3/week	None	Transfers: all independent with supervision	None	Independent
113	18	Male	Spastic quadriplegic CP	V	Walker/trike x2/week; swimming x2/month	Physiotherapy x1/week; conductive education past 4 weeks	Transfers: hoist for all	Epilepsy controlled by medications	Carer proxy
116	32	Female	Spina bifida	Not applicable	None	None	Transfers: independent sit-stand, chair-chair, chair-floor not completed	None	Independent
118	24	Female	Spastic quadriplegic CP	IV	Chair yoga	None	Transfers: all with support of x2 persons / hoist	Epilepsy controlled by medications	Independent
119	19	Male	Dystonic quadriplegic CP	IV	3-wheel bike every day for 2 h, home stretches	Physiotherapy x1/week	Transfers: all independent	None	Carer proxy
121	30	Male	Spastic diplegic CP	IV	None	Physiotherapy x2 in 6 months	Transfers: all independent	Hydrocephalus (no shunt required)	Independent

CP: cerebral palsy; GMFCS: Gross Motor Function Classification System.

Study objective 1: practicalities of community-based gym exercise through uptake, attrition, and perspectives of adults with childhood-onset disability

Study recruitment logs

Quantitative data from recruitment logs demonstrated uptake and attrition of community-based gym exercise for this population. Examination of the study log revealed 22 adults with childhood-onset disability contacted the research team about the study, of whom eight were not eligible and four were unable to participate due to personal commitments (e.g., work, holidays). No participants withdrew from the study and the majority (n = 7/10) completed all four exercise sessions. Two participants missed one exercise session due to ill health or work commitments. A further participant missed two exercise sessions and the focus group discussion due to being in respite and being unable to arrange suitable transport.

Weekly feedback

Data from weekly feedback surveys (n = 26/30 possible responses) and focus groups (n = 2) confirmed a range of practicalities required to support adults with childhood-onset disability to participate in community-based gym exercise. Of the 10 participants in this study, all 10 completed the weekly feedback survey in week 1 compared to 8/10 in weeks 2 and 3. On average, participants rated their enjoyment of the sessions as 9.6 out of a total possible score of 10 (range 7-10). Across the three weeks, the rowing machine (n = 6/26, 23.1%), ski erg machine (n = 4/26, 15.4%), lateral pulldown (n = 4/26, 15.4%) and exercising alongside others (n = 4/26, 15.4%) were reported as enjoyable aspects of the exercise session. Almost one-third of responses (n = 8/26, 30.8%) did not contain a least enjoyable aspect, or reported that everything was enjoyed. The remainder of responses consisted of a variety of aspects least enjoyed, including use of the resistance training ropes (n = 3, 11.5%) and biceps curls (n = 2/26, 7.7%).

In terms of environmental enablers, responses revealed support from research staff (n = 15/26, 57.7%) and adaptive equipment (n = 7/26, 26.9%) helped with completion of exercises. The most reported challenge to completing the session was related to individual limitations of body structure and function (n = 7/26, 26.9%). Finally, most responses (n = 13/26, 50.0%) did not provide suggestions for improvement, or reported that improvements were not required. However, several responses (n = 5/26, 19.2%) reported that increasing the weight or intensity of exercises would improve the sessions.

Focus groups

Focus groups lasted 37 (n = 4 participants) and 50 min (n = 5 participants). Three broad themes emerged from the focus group data.

Focus group theme 1: “I wouldn’t be able to exercise…there’s no option for a community-based setting”

Qualitative focus group data demonstrated an interest in community-based gym exercise from the perspectives of non-ambulant adults with childhood-onset disability. All participants highlighted the lack of opportunities for community-based gym exercise for non-ambulant adults with childhood-onset disability:

There’s not enough things out there for disabled people that I’ve noticed in the past (Participant 116)

The lack of opportunities reflects the lack of risk minimisation that would facilitate participation in community-based exercise for this population:

I hadn’t been to a gym unless I came up here because there was nobody there to physically train me. They’re all afraid of me just in case I fall or something. (Participant 111)

Oh, can’t allow you to do that because you might drop that on your foot or on your leg and you might break something.

(Participant 119)

Focus group theme 2: “You don’t realise the benefit of coming here”

Within a second theme, participants also highlighted benefits associated with their participation, reflecting three domains of the International Classification of Functioning, Disability and Health [37]: body structure and function, activity, and participation. Self-reported improvements in body structure and function included increased strength, fitness and mood, and reduced pain. Self-reported improvements in activity and participation included being able to function more in everyday life and the value of inclusion.

I’ve a lot more pain than I used to have. Cause my posture is awful, so, um, and I know I notice when I do exercise, it’s so much better. (Participant 101)

…the main focus is, is my arms…. So I’m able to transfer quicker and do a lot more. (Participant 116)

…it’s making us feel that we’re included and we’re not just pushed to the side cause we’re disabled. (Participant 116)

Focus group theme 3: We can do better

A third theme from the focus groups, We can do better, identified practicalities of community-based gym exercise from the perspectives of participants. This theme had two sub-themes: (1) problem solving, and (2) “ingredients” for community-based gym exercise.

Sub-theme 1: problem solving

Participants discussed barriers to participation in community-based gym exercise and identified solutions to some of these barriers. In relation to staff resources, participants highlighted the importance of having 1-1 support available to assist with equipment and personal care.

And my mum used to come in and do equipment and stuff with me, but now, because she’s getting older, she finds it difficult to do that. So I need somebody there to push me to do it. (Participant 111)

it’s good to know that personal support is here if you need a hand actually in the bathroom or something like that it’s good, you know? (Participant 102)

Participants also highlighted that simple, but specialist equipment provided a solution to adapt exercises and enable participation.

The way like literally simply just putting on a ski erg, attaching the wee longer handles to be able to use it, ….wee simple things really changed it. (Participant 119 proxy)

Yeah and the straps for ≪him≫ because he can’t grip. (Participant 113 proxy)

Finally, participants acknowledged that including them in community-based gym exercise is a potential solution to changing societal attitudes.

Yes, I like challenging people’s perceptions because the fact that I’m in a wheelchair doesn’t necessarily mean that we, I can’t do anything. (Participant 111)

It’s it’s good because people will think, Oh, she can’t do this and she can’t do that. But in reality we’re just like everybody, like everybody else. We’re just doing things sitting down. (Participant 103)

Sub-theme 2: “ingredients”

The second sub theme identified key “ingredients” for community-based gym exercise in relation to accessibility, location, staff expertise, format and duration of exercise. Firstly, participants reported the requirement for accessible facilitates and dignified toileting.

The other problem with most gyms and things in the community is the access to the gyms. Small wheelchair access…access to the normal gym just isn’t there. (Participant 113 proxy)

She said toilets, having toilets that she can actually go to. (Participant 104 proxy)

Whilst participants highlighted it would be easier for them to exercise in their own local communities due to difficulties with transport, they would be content to travel further afield in the absence of opportunities in their own local communities.

There’s not a very, there’s not a lot of, um, transport, you know, for disabled…there, there are a few, but they’re not great. (Participant 116)

See if there was a gym suitable that you could adapt every kind of piece of equipment, you wouldn’t mind travelling. (Participant 119)

I travelled, but happily travelled and I, I loved it and I, I really looked forward to it every week. (Participant 101)

The role of the physiotherapist as a key resource was also outlined in terms of their knowledge of the participants’ conditions and as an alternative to long term physiotherapy input.

Physio wasn’t essential the whole time, but definitely to show ≪me≫ what’s what…and to make sure ≪I’m≫ not overreaching. (Participant 104)

It was good this time to have physio knowledge and I seen it as a good alternative to physio as opposed to going to your GP and begging for community physio. (Participant 102)

The format of the sessions was discussed, with some parti­cipants preferring to exercise alongside other peers with disabilities.

Probably other people with disabilities, because they know what we’re going through. (Participant 111)

You’d feel more comfortable, yeah, being with other wheelchair users, yeah. (Participant 119 proxy)

In contrast, others had no preference regarding who they exercise with in the community.

I don’t really mind. I don’t really mind either being with disabled or able bodied. Maybe a mix of the two. (Participant 121)

Yeah, I don’t mind. I think maybe, excuse me, maybe a mix would be nice cause even with the lovely [support staff], even just them in the warmups and all joining in with us and stuff, it was just really nice I thought. (Participant 101)

Preferences regarding frequency of participation and duration of sessions varied from once per month to four times per week for around 40 min. However, if frequency was once per month, participants suggested participating online or independently at home in between sessions.

And even if there was a way that we could do this once a month, but then through, and, in rest of the time, if we had like online stuff that we could follow, to do, in our own space or something. (Participant 102)

Probably a couple of times a week maybe. (Participant 121)

Yeah with different machines, in 40 minutes because we were able to do it. (Participant 116)

Study objective 2: practicalities of community-based gym exercise from the perspectives of those who designed and delivered the study

Analysis of the written notes from weekly debrief meetings identified two broad areas of practicalities: (1) equipment and exercises, and (2) format of sessions.

Equipment and exercises

Weekly debrief meetings highlighted the importance of adapting standard gym equipment, in addition to using specialised adaptive equipment, for example separating the row erg and using adaptive handles for ski and row ergs to facilitate adults to use the machines whilst remaining in their wheelchair. In addition, provision of adaptive grip aids, such as the Active Hand^®, gave individualised access to equipment such as dumbbells, barbells and ski/row erg handles. Finally, specialist staff knowledge of childhood-onset disability ensured exercises were tailored to meet individual needs, and aids and equipment were risk assessed for individual use. For example, staff highlighted caution with dumbbells and adapted skipping ropes, and exercising inside a rig for those with dystonic upper limb movements to reduce risk of injury.

Format of sessions

In relation to format of exercise sessions, weekly debrief discussions highlighted exercise sessions were simplified when participants worked alongside a peer with similar abilities as adaptations to exercises were comparable and participants were observed to motivate each other. In addition, the importance of collaborative working between exercise professionals, physiotherapists and personal support staff helped to ensure participant safety and staff confidence.

Staff also acknowledged the need for exercises to be tailored for each individual due to heterogeneity of participants’ abilities. This was facilitated by completing a short interview with participants in advance of the first session, and subsequent sessions were further facilitated through discussions with participants during the sessions and weekly feedback from participants after the sessions. Staff also noted the changing role of exercise session facilitators as the study progressed. For example, physiotherapists primarily facilitated the first session, but there was increasing input from exercise professionals during later sessions as they built rapport with participants and became more confident in working with adults of different abilities.

In addition, the value of personal support staff being on hand to facilitate participation in exercises, such as assisting participants to put on a gripping aid or retrieving equipment from ground level. Finally, staff noted the benefits of the chosen gym space; the gym floor was spacious with most equipment around the edges and large, open space in the middle of the room, and freestanding equipment that was easily moved to accommodate participants’ wheelchairs and personal support staff.

Adverse events

No serious adverse events were reported. When asked at the start of exercise sessions two to four, no adverse events beyond the anticipated delayed onset muscle soreness were reported. All participants reported mild delayed onset muscle soreness. No incidents were reported in line with Mae Murray Foundation’s risk assessment and incident processes.

Discussion

This mixed methods study suggested a lack of opportunities and risk minimisation for non-ambulant adults with childhood-onset disability in the community gym setting. Qualitative findings proposed the importance of accessible environments and equipment, and support from peers and specialist staff in facilitating community-based gym exercise for this population. Overall, community-based gym exercise for non-ambulant adults with childhood-onset disability is warranted but several barriers must be addressed to enable participation.

Findings from focus group discussions suggested the importance of having the opportunity to participate in community-based exercise among non-ambulant adults with childhood-onset disability. In addition, most participants attended and completed all four sessions, suggesting exercise in community gyms is feasible among this population. However, several barriers remain that exclude this population from participating in exercise in community gym settings. Barriers identified by this study were consistent with previous research and included inaccessible environments [15,16,18,19] and equipment [15,16], lack of support from peers [17–19], negative societal attitudes [15,19,23], and lack of specialist staff support [20–22]. In addition, based on their previous gym experiences, participants acknowledged gym staff were often fearful that non-ambulant adults would injure themselves, a barrier reported in previous research [18]. However, a recent review demonstrated that whilst risks are unavoidable, appropriate risk management strategies can be used to ensure safe participation in physical activity among non-ambulant adults with childhood-onset disability [39]. Accordingly, during weekly debrief meetings, staff highlighted several risk minimisation strategies such as exercising outside a rig for those with dystonic upper limb movements. Furthermore, staff and participants in the current study reported no adverse events beyond the anticipated mild muscle soreness that had been explained to participants in advance. Given this population has the same rights to full and effective participation and inclusion in their communities [40], exercise and healthcare professionals are required to assess and manage risks on an individual basis to enable those with significant motor difficulty to experience community-based gym exercise. This will unequivocally require upskilling of current staff and integration of specialised disability education within relevant further and higher education training programmes.

Findings from focus group discussions indicated participants were positive towards the pre-emptive measures, such as provision of dignified toileting facilities and adaptive equipment, put in place to mitigate barriers to participation in community-based gym exercise. Co-creation of an inclusive strategy or framework that provides implementable solutions to such barriers, may facilitate leisure organisations to create, manage and sustain inclusive gyms, thus providing opportunities for those with non-ambulant childhood-onset disability to exercise in community gyms. The pre-emptive measures used in this study (please see Table 1 for more information) may be used as a basis for an inclusive gym framework. However, a collaborative approach, whereby relevant organisations work in partnership with those with lived experience, is required to ensure such a framework is appropriate and useful for those who will use it [41,42]. In addition, the framework should be generalisable to other cities and countries internationally and a suitable dissemination and knowledge translation strategy [43] is necessary to ensure subsequent implementation is successful [44,45].

Finding from focus groups and weekly debrief meetings highlighted the importance of collaboration between healthcare, leisure and personal support staff. This was further emphasised by the support needs of participants within the gym environment. Whilst all participants were non-ambulant, the level of support needs varied and required problem solving from both health and fitness staff to support individuals to complete the exercises. Funded physical activity referral programmes promote such collaborative working and have been shown to improve adherence to physical activity and health related outcomes [46,47]. However, there is a lack of programmes specifically for adults with childhood-onset disability, as the majority focus on cardiovascular disease, musculoskeletal conditions, mental health disorders and diabetes [46,47]. Furthermore, specific long-term conditions and diseases sit outside the scope of the NICE guidelines on exercise referral programmes [48]. A funded physical activity referral programme specific to adults with childhood-onset disability may support the safe transition of those with childhood-onset disability into community exercise settings and instil confidence in patients and staff alike. In addition, such a programme has potential to remove additional barriers to participation in community-based gym exercise such as reducing financial costs associated with travelling and admission to gyms [18] and may also incentivise leisure operators to invest time and money on creating and maintaining inclusive gyms.

A physical activity referral programme for adults with childhood-onset disability in tandem with appropriate adaptations and support may also help to address unmet health service needs [11], and facilitate this population to take more ownership in managing their condition and maintaining their mental wellbeing. Whilst subsequent implementation and evaluation of such a programme requires dedicated and sustained funding, it has potential to reduce burden on health service resources in the long term [49] by reducing the risk of developing other chronic conditions and slowing the decline in mobility associated with age [12–14]. It also aligns to this population’s desire to move away from physical activity within traditional therapy settings [50]. Furthermore, inclusion of this population in leisure settings increases visibility of disability, promotes a sense of belonging within the community, and may help to transform societal attitudes on disability [18,19,21]. Therefore, future research is warranted to co-design a physical activity referral programme specifically for adults with childhood-onset disability, in collaboration with relevant stakeholder groups to enhance impact, implementation and sustainability [41,42].

A strength of this study was its inclusion of non-ambulant adults with childhood-onset disability, a group that has been underrepresented in previous research [28–31]. This study was exploratory and carried out under significant time and resource constraints, and as such was limited by the small number of participants and childhood-onset conditions included. The lack of flexibility in scheduling the exercise sessions meant that some potential participants could not participate; ensuring access during evenings and/or weekends may enable more people to participate in projects and programmes such as this. In addition, this study was undertaken in a privately owned gym and due to different approaches in relation to training and qualifications between privately and publicly owned gyms, further work is required to establish the feasibility of adaptive and inclusive exercise for non-ambulant adults with childhood-onset disability in publicly funded gyms. Finally, no serious adverse events were reported by staff during weekly debrief meetings and participants did not report any adverse events beyond the anticipated delayed onset muscle soreness. However, this study remains limited by not seeking further data from participants in relation to intensity and duration of symptoms experienced post-session.

Conclusion

There is an interest in community-based gym exercise for non-ambulant adults with childhood-onset disability. However, the absence of a condition-specific physical activity referral programme, inclusive gym framework and the lack of accessible and inclusive gyms leads to limited opportunities for this population to participate in community-based gym exercise. Future work is warranted to develop a framework for creating inclusive gyms in tandem with co-designing a physical activity referral programme specifically for adults with childhood-onset disability.

Acknowledgements

We would like to thank the adults with disability for taking part in this research, and their families and caregivers for supporting their participation. We wish to express our gratitude to staff from the Mae Murray Foundation (Talia McDowell and Kyleigh Lough) and Equip Fitness Ltd (Johnny Pedlow and Karl Williams) who helped during the exercise sessions. We also thank Equip Fitness Ltd for enabling use of their facilities during the study, Dr Natalie Klempel for transcribing the focus groups, and Dr Claire Kerr for reviewing this work. Finally, this research was supported by Ulster University.

Disclosure statement

Alix Crawford, Chairperson of the Mae Murray Foundation, has a daughter with non-ambulant cerebral palsy. Karen McConnell is a Non-executive Director on the Mae Murray Foundation’s Board of Directors. All other authors have no conflicts of interest.

Data availability statement

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.