Supportive mobility device use across the life span by individuals with cerebral palsy: A qualitative study

Abstract

Aim:

To understand the mobility experiences, supportive mobility device (SMD) use, and desired participation outcomes of individuals with cerebral palsy (CP) across the life span, and describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes.

Method:

In the second phase of an overarching study, focus groups were conducted with 164 participants (68 individuals with CP; 32 females, 36 males; mean age 17y 8mo, SD 11y 11mo, range 3–68y), 74 caregivers (50 females, 24 males), and 22 healthcare providers (14 females, eight males) across four US cities. Sessions were audio-recorded, transcribed, and analysed using constant comparison.

Results:

Six themes emerged. Five presented across all stakeholder groups: (1) the system is broken; (2) equipment is simultaneously liberating and restricting; (3) adaptation across the life span; (4) designed for transport, not for living; and (5) sharing our stories and sharing resources. One theme (theme 6) was specific to healthcare providers: caught in the middle.

Interpretation:

This qualitative study underscores the simultaneous value and frustration associated with SMDs as described by the community with CP, and recognition among all stakeholders of the need to improve connections and resource networks within the community with CP to improve SMD design and provision processes across device types and across the life span for individuals with CP.

Across the world, cerebral palsy (CP) is the most common perinatal motor disability.¹ Nearly 10 000 children are diagnosed with CP each year and approximately 764 000 individuals are living with CP in the USA.² Individuals with CP experience heterogeneity of motor function, communication ability, cognition, and participation. However, delays in walking and other mobility skills are common.³ To facilitate participation, individuals with CP across the life span benefit from supportive mobility devices (SMDs) such as orthoses, walkers, crutches, or wheelchairs.^3,4 Such devices are considered essential environmental factors from the holistic lens of the World Health Organization’s International Classification of Functioning, Disability and Health framework.³ Within this framework, current standards of rehabilitation practice include SMD provision as a part of individualized, person- and family-centered interventions.⁴ However, provision processes vary across regional and clinical context. A lack of resources exist to guide the introduction and evolution of SMDs throughout the life span, especially as ambulatory ability changes over time.^5,6 In some cases, clinical trends result in delayed provision of wheeled SMDs until efforts to promote independent walking are exhausted, despite evidence supporting their benefits.^7,8

There is a limited understanding of SMD provision and use from stakeholders with lived experience of CP. For example, younger children view their devices as both functional and social, often incorporating them into play schemes.^9,10 They often consider SMDs as extensions of their bodies, which contributes to the development of self-concept and identity either positively or negatively depending on contextual messaging about disability and technology.^11,12 Adolescents with CP embrace multiple modes of mobility based on their activities and the relative inaccessibility and accessibility of their environments,¹³ looking on SMDs as an opportunity rather than a failure.^9,14 Adults with CP recognize SMDs as positive facilitators of participation, while simultaneously critiquing elements of design, choice, and financial and environmental accessibility.^15,16 Caregivers of children with CP report that SMDs help reduce their physical and emotional stress and improve their child’s participation, agency, and sleep patterns.^17,18 Challenges with SMD maintenance and repair, cost, and bulk and size are also frequently reported.^19–21

Provision and use of SMDs is also an important consideration within an overarching context of shared decision-making and person- and family-centered care.^5,22,23 However, how SMD decision-making evolves, especially during the transition to adulthood, is largely unknown.^22,24 This gap is concerning, considering that the estimated care costs across the life span of an individual with CP approximate US$1 million,²⁵ including SMDs. Based on cost projections using average manufacturer’s suggested retail price values of SMDs alone for individuals with CP up to age 21 years, ambulatory individuals (classified in Gross Motor Function Classification System [GMFCS] levels I–III) can have lifetime costs up to US$68 000 (±20%), with costs for individuals in GMFCS level IV increasing to US$90 000 (±20%), largely due to SMD needs.²⁶ These projections do not include ancillary costs that are often out of pocket, such as accessible transportation or home modifications. Additionally, high rates of device abandonment lead to needless SMD expenditure and cost increases.²⁷ However, fiscal implications from the perspective of stakeholders with lived experiences of CP have not been widely studied.

These factors were highlighted by nearly 50 stakeholders during Research CP, a recent participatory action initiative that included webinars, consensus building, and an in-person workshop to address priorities for person-centered CP research.²⁸ A better understanding of SMD impact is critical to support these priorities, specifically in identifying interventions (including equipment) to maximize functional outcomes and minimize pain and fatigue throughout aging and across GMFCS levels.²⁸

A two-phase, mixed-methods study was conducted whose overarching objectives were (1) to understand the mobility experiences, SMD use, and desired participation outcomes of individuals with CP across the life span and (2) describe how healthcare provider perspectives and professional resources may influence mobility decision-making processes and outcomes in individuals with CP and their caregivers. The first phase of the study consisted of a Delphi consensus-building process. The Delphi study was a structured way to build consensus among experts using three rounds of anonymized questionnaires and facilitated discussion. This took place with nine paid stakeholders from the community with CP (individuals with CP, caregivers, and healthcare providers) to codevelop and prioritize questions and topic areas for an SMD-focused qualitative protocol. This article describes the second phase of our study, when deployment and analysis of this protocol took place.

METHOD

This phenomenological study was conducted with institutional approval from the Seattle Children’s Research Institute ethics review board (no. 1490). Before participating, participants provided written informed consent and/or permission for all research procedures. All names used are pseudonyms.

Participants and setting

Individuals and family dyads (individual with CP plus caregiver) and healthcare providers (physicians, occupational and physical therapists, and assistive technology professionals) were recruited using purposive sampling across four US cities with regional CP care centers: Boston, Chicago, Los Angeles, and Seattle. Due to the broad nature of the study aims and lack of existing life span-related SMD data, a large and diverse sample was intentionally recruited.²⁹ Site ‘champions’ were identified through professional networks to assist in procuring space for study procedures and aid in local recruitment (posting of study flyers and e-mail distribution to patient registries or listservs). Potential participants directly contacted a study coordinator, who conducted eligibility screening, study enrollment and scheduling, and follow-up. The inclusion and exclusion criteria can be found in Table 1.

TABLE 1.

Study inclusion and exclusion criteria

Criteria	Description
Inclusion	Individuals with CP of any age and with functional skills consistent with GMFCS levels II to V Individuals 18 years of age and older who identified as family members or caregivers of individuals with CPa Licensed or certified healthcare providers (e.g. therapists, physicians, assistive technology professionals)
Exclusion	Participant with no prior experience with SMD

^aFor individuals under the age of 18 years, or for individuals over the age of 18 years with limited ability to consent due to cognitive status, a parent or legal guardian was required to provide consent for themselves and permission for their child to participate in the study. Verbal assent was sought and recorded for all participants over the age of 7 years, even in cases where cognitive status required caregiver permission for study participation.

Abbreviations: CP, cerebral palsy; GMFCS, Gross Motor Function Classification System; SMD, supportive mobility device.

Study team and positionality

The research team consisted of two PhD-trained pediatric physical therapists, each with between 20 years and 30 years of clinical and research experience with individuals with CP and their families, a physiatrist with over 40 years of clinical and advocacy expertise within the community with CP, and an experienced study coordinator. While all members of the research team have worked extensively with the community with CP professionally, none identified as having lived experience with CP. For this reason, it was critical to convene a nine-member stakeholder advisory panel, which consisted of individuals with ambulatory and non-ambulatory CP, caregivers, and healthcare providers to codevelop and guide the study as well as participate in data analysis and interpretation activities.

Study procedures

Focus groups are a valuable way to gain perspectives from individuals with shared lived experiences, encouraging participants to elucidate their views and express disagreement or agreement in a group dynamic.³⁰ Focus groups consisting of six to eight individuals or family dyads were carried out by two research team members with expertise in qualitative methods. Because of the large sample, attempts were made to stratify focus groups by age and GMFCS level (age bands: 0–7y, 8–18y, and >21y; GMFCS levels II–V), so participants were more likely to have some crossover in SMD experience. Based on participant demographics, this was not always possible for GMFCS level; age stratification was largely successful. Professional focus groups took place separately from participants with CP, without stratification needed.

Focus groups were held in accessible community locations at each study site. Researchers established ground rules (i.e. validation of all perspectives and experiences, sharing without interruption, silencing cell phones, maintaining confidentiality, plus additional rules agreed on by each group) and facilitated discussion. Researchers used the semi-structured focus group guide codeveloped by the stakeholder advisory panel during the first phase of the study using a Delphi consensus technique.³¹ An excerpt of the guide is included in Figure 1. Focus group sessions lasted between 60 minutes and 90 minutes and all sessions were audio-recorded. Participants were issued a US$30 gift card as compensation for their time and expertise.

FIGURE 1.

Sample of semi-structured focus group questions asked at each session. These questions were written and prioritized by a nine-member stakeholder advisory panel representing the community with cerebral palsy (CP) during a previous study activity and are divided based on the open-ended categories used to generate the questions. Abbreviations: GMFCS, Gross Motor Function Classification System; SMD, supportive mobility device

Data analysis

Focus group recordings were transcribed verbatim and coded. Independent hand-coding of transcripts was conducted by the research team and stakeholder advisory panel. A constant comparative method was employed to create open codes, narrow to focused codes, and ultimately determine data saturation to derive central themes.³⁰ After initial independent coding rounds, the three lead researchers met to discuss and refine code groupings until themes emerged, using discussion to resolve disagreement and respond to questions until 100% agreement was reached. To ensure rigor and minimize researcher bias, an audit trail was created for transparency; an example coding scheme is illustrated in Figure 2. Additionally, thick descriptions of participant experiences were extracted from the data to ensure that context was maintained. Researchers engaged in self-reflection to identify potential biases; member checking, which included provision of a summary of results and the option to review transcripts, was conducted with all participants to ensure the accuracy of the themes and avoid misinter-pretation of the data.³⁰

FIGURE 2.

Coding process and evolution of thematic analysis. Sample coding scheme, which was part of the qualitative audit trail to ensure rigor in qualitative data analysis and interpretation. The quotes were first coded into open codes by multiple researchers and then condensed into focused codes, with discussion to resolve any disagreement as themes emerged from the focused codes

RESULTS

A total of 164 participants took part in 24 focus groups. This included 68 individuals with CP (32 females, 36 males; mean age 17y 8mo, SD 11y 11mo, range 3–68y), 74 caregivers (50 females, 24 males), and 22 healthcare providers (14 females, eight males; physicians, occupational and physical therapists, and assistive technology professionals). See Table 2 for the participant demographics.

TABLE 2.

Participant demographics

	Seattle	Chicago	Los Angeles	Boston	All sites total
Participants
Caregivers (consented)	16	23	15	20	74
Professionals (consented)	10	8	2	2	22
Participants with CP (consented)	0	7	8	0	15
Participants with CP (via caregiver permission)	16	15	7	15	53
Total	42	53	32	37	164
Age range (years) of participants with CP (either consented or via caregiver permission)
3–6	7	0	0	3	10
7–12	5	5	0	8	18
13–20	4	9	3	4	20
21–40	0	9	8	0	17
41–60	0	0	2	0	2
61+	0	0	1	0	1
Total	16	23	14	15	68
Ethnicity (all participants)
White	33	48	28	36	145
Black or African American	7	3	1	1	12
Asian	0	0	3	0	3
Alaska native/Pacific Islander	2	0	0	0	2
Middle Eastern	0	2	0	0	2
Hispanic/Latino	2	6	2	0	10
Non-Hispanic/Latino	40	47	30	37	154

Abbreviations: CP, cerebral palsy.

Six themes emerged from the data. Five were present across all stakeholder groups: (1) the system is broken; (2) equipment is simultaneously liberating and restricting; (3) adaptation across the life span; (4) designed for transport, not for living; and (5) sharing our stories and sharing resources. An additional theme (theme 6) emerged specific to the healthcare providers: caught in the middle. These themes are discussed next, with the corresponding participant quotes shown in Table 3.

TABLE 3.

Participant quotes

Quote number	Representative quote	Theme
1	One of the biggest issues is other people. Outside sources, insurance companies, these people sitting in offices telling my daughter what she can or can’t have or what she will and won’t be able to use. Whereas PTs who work their butts off to get these letters written, and my parental input saying what we will and won’t use at home and what will be successful, just for somebody in an office to say, ‘No you can’t, because we already gave you one thing’. – Daphne, caregiver	The system is broken
2	It took me two and a half years to get an adapted wheelchair … He’s a 19-year-old boy, he should be able to get out of the house just like anyone else … – Jeanne, caregiver	The system is broken
3	If [our equipment] breaks, it’s like a whole month to come and repair that part, and my son has to miss his school. – Stephanie, caregiver	The system is broken
4	I’m just saying how ridiculously expensive everything is. A wheelchair costs as much as a car. Come on, it’s ridiculous! – Tasha, caregiver	The system is broken
5	Why can’t we get a bike approved? A bike is a necessity for normal growth and learning and interaction with other peers. All these kids are sitting on the sideline and they shouldn’t be. We’re holding them back educational and physically and socially and they’re part of society and have a lot to give back. We have to get better and a bike doesn’t have to be US$5,000. – Carlos, caregiver	The system is broken
6	And some things, I don’t know if I would have chosen … I don’t know if we would have chosen that stander over another one, but we couldn’t try them out, and it is hard when you spend crazy amounts of money and then you have it and you can’t return it. I wish that there was a place like that where you could just go try out all this stuff and be like, ‘Oh, that would work perfect’. – Alyssa, caregiver	The system is broken
7	When I got my chair I just took off from my house and I basically didn’t come back for two hours and I just explored my neighborhood. I can even stand up and give my mom a huge hug while I’m standing, which is my favorite part of my day. So it has just opened my world more than I think people would even realize. – Julie, young adult with CP	Equipment is simultaneously liberating and restricting
8	Sometimes he forgets he has a disability, kind of, because in class they give them some task, like be the line leader and stuff, and he gets involved and when they move from the classroom to the gym room which is a distance, he moves around with the crowd, gets there [with his SMD]. It’s allowed us access to the outside world – Cheryl, caregiver	Equipment is simultaneously liberating and restricting
9	The wheelchair works in sand dunes and my walker works really well, a bit better on the grass and in the water too! – Chris, child with CP	Equipment is simultaneously liberating and restricting
10	They decided to put braces on me … we rode to school in taxis, so in the taxi home I would start unbuckling the braces … I would jump out, drop the braces on the front lawn, and go in the house. As a little kid, I was setting myself free. – Sabrina, adult with CP	Equipment is simultaneously liberating and restricting
11	[One of the challenges] with the crutches and the walker for me … I won’t be able to have my hands free. Because you can’t really do anything unless you stop, put them down, hold on to something … then you can function – Monique, young adult with CP	Equipment is simultaneously liberating and restricting
12	I need a chair that’s going to be able to adapt to my needs in that environment. For example, sometimes I cannot fit under the desk in the classroom. – Alexis, young adult with CP	Adaptation across the life span
13	They make so much great equipment for children that does not get bigger for adults … it needs to be a universal thing. We have disabled people living in this world, let’s make it so that everyone can function. – Manny, caregiver	Adaptation across the life span
14	Equipment never keeps up with the pace of the … either the development of the child or the growth of the child, which are two different aspects. – Charlotte, occupational therapist and assistive technology professional	Adaptation across the life span
15	You can’t manufacture a product for everyone because every single person in this room has a different need or set of needs. They need to listen and they need to observe and they need to measure and they need to really create the implement for the need of that individual. – Jack, assistive technology professional	Adaptation across the life span
16	I would want my equipment to express my personality and things that I love. – Monique, young adult with CP	Designed for transport, not for living
17	They limit our colors or they limit our attractiveness. – Cindy, adult with CP	Designed for transport, not for living
18	I don’t think that the companies think about the whole picture. They look at the immediate effects. That chair gets you from point A to point B on a flat surface indoors. That’s it. They don’t look at the big picture of your daily life. – Jocelyn, caregiver	Designed for transport, not for living
19	Flying would be kinda cool! – Malik, child with CP	Designed for transport, not for living
20	My wife and I both had careers enhanced, lives changed by being the parents of a child with CP. She founded a non-profit to teach all the things she has learned … – Harvey, caregiver	Sharing our stories and sharing resources
21	We’re going to the beach. It was a state park, and on their website they said, ‘Beach wheelchairs available upon request. Just talk to the ranger’. We pulled in, talk to the ranger, they said, ‘No problem’. They brought it out. It was the best thing ever, because he could go for a walk with us or just get to the spot that we were going to sit on the beach. It was fabulous. – Julia, caregiver	Sharing our stories and sharing resources
22	We’re getting a lot of information from each other. Through word of mouth. And it should be coming from the professionals. Yeah, you can advocate all you want, but it shouldn’t take two people getting in a room together and talking [about equipment] for a person to say, ‘Okay, I need this to better my life or better my situation’. – Alexis, young adult with CP	Sharing our stories and sharing resources
23	The hospitals or clinics are not willing to pay for tech support to have things built and adjusted and repaired … some of the manufacturers are in such a crunch that they can’t provide very many trial items, or only in one size. So I feel like there’s been a stranglehold on some of us. – Cynthia, occupational therapist	Caught in the middle
24	It’s really difficult to manage expectations, in this field we’re dealing with a lot of very custom approaches or outcomes and not being able to physically test a lot of those custom interventions, but still speak to those, and then get insurance to agree that that is going to be the right way. – Keith, assistive technology professional	Caught in the middle

Abbreviations: CP, cerebral palsy; PTs, physical therapists; SMD, supportive mobility device.

Themes

The system is broken

This theme describes the challenges faced by individuals with CP and caregivers as they navigate SMD procurement, use, and maintenance. Participants recognized that they must work within a flawed system often regulated by unique policies based on state of residence, types of funding available, and the knowledge, preferences, and availability of individual providers. Many participants expressed frustration with a consistent cycle of SMD denials and appeals despite advocacy by their rehabilitation teams (Table 3, quote 1). Lengthy delays between evaluation and delivery or for repairs to essential SMDs were frequently reported (Table 3, quotes 2 and 3). Participants highlighted issues of cost, citing a system that labels SMDs as ‘specialized’, resulting in significant price inflation that impacts participation (Table 3, quotes 4 and 5). A lack of knowledge about different SMD options and a lack of trial equipment were also common (Table 3, quote 6).

Equipment is simultaneously liberating and restricting

The second theme describes the perspectives of SMDs as critical facilitators of independence, agency, and self-concept throughout the life span, while simultaneously noting SMD-related barriers to participation. Nearly all participants shared their excitement about the functional and social freedom and inclusion facilitated by SMDs (Table 3, quotes 7 and 8). Another common finding was the recognition that multiple forms of SMDs were essential to navigate different environments and situations (Table 3, quote 9). Despite these clear benefits, participants simultaneously noted the restrictive aspects of their SMDs, including limited access to certain activities or environments (Table 3, quotes 10 and 11).

Adaptation across the life span

The third theme describes the need for both SMDs and environments to better adapt and respond to individual needs across the life span. For example, participants described practical challenges such as fitting under desks or in workspaces (Table 3, quote 12). Participants also noted frustration with the lack of SMDs carrying over during the transition to adulthood (Table 3, quote 13). As one participant stated, ‘I’ve had CP all my life, it’s not going away just because I’m an adult now’ (Mia, adult with CP). Other participants discussed challenges related to SMDs keeping pace with growth and/or development (Table 3, quote 14). Participants explored tensions between adaptability and the need for multiple types of SMDs, agreeing that while adaptation is critical, there will always be a simultaneous need for custom SMDs to meet the unique needs of individuals with CP (Table 3, quote 15).

Designed for transport, not for living

The fourth theme describes frustration with perceived lack of design and esthetic innovation for SMDs as an essential part of life. It also encompasses creativity and innovative ideas about SMDs. For example, participants discussed their desire for SMDs to reflect their personality (Table 3, quote 16). They noted that there is limited choice when it comes to esthetics, which was at times incongruent with their desire to express themselves with their SMD as an extension of their body (Table 3, quote 17). Participants also agreed that insurance companies and other outsiders viewed most SMDs as a means of transport rather than a key means of participation in family and community activities (Table 3, quote 18). Young children expressed their biggest wishes for their SMD design and function, including flying, temperature control, or a self-cleaning wheelchair (Table 2, quote 19).

Sharing our stories and sharing resources

The fifth theme represents a call for voices to be heard more explicitly, receive and provide support for others, and create a means of centralized information sharing to empower the community. For example, some caregivers noted that advocacy efforts that began as a parent of a child with CP turned into career opportunities (Table 3, quote 20). Other participants shared their SMD successes to help others with identified barriers, such as seamless access to a beach chair for a day trip or grant funding opportunities for a needed SMD item (Table 3, quote 21). Most participants noted some degree of isolation in navigating the complexities of life with CP. They recognized a lack of community and shared knowledge, especially early on in their CP journeys. Simple activities such as the SMD focus groups were a powerful way to build stronger communities and learn from each other (Table 3, quote 22).

Caught in the middle

The final theme was specific to healthcare providers. This theme described being caught in between wanting to provide optimal care and SMDs to their clients, yet recognizing barriers such as SMD design and access, the constraints of funding limitations, increasing regulatory climates, and reduction of specialty seating clinics across the USA. For example, professionals recognized the challenges of preserving salary support for assistive technology professionals, appropriate trial items, and having to contend with frequent appeals and delays in ordering SMDs (Table 3, quote 23). They also described the fine balance between empowering families, working within funding constraints, and relying on clinical experience for customized SMD solutions that may not yet have a significant evidence base to draw from (Table 3, quote 24). Managing expectations within this complex professional climate was noted as one of the field’s most significant challenges.

DISCUSSION

This study, the second phase of a mixed-methods, multiphase research project, conducted focus groups across a diverse sample of individuals with CP, their caregivers, and healthcare providers to understand experiences of SMD provision and use across the life span. The resulting themes add rich context, highlighting the complex landscape of SMD previously reported for individuals with CP and their caregivers.^11,13,15 Findings offer new insights regarding lived experience and healthcare provider perceptions that may inform collaborative care but have rarely been addressed in the literature to date.^4,5

In particular, themes 1 and 2 align with findings reported and research priorities established during Research CP, indicating that current standards of practice may not meet the everyday needs of individuals with CP across the life span aiming to maximize participation and minimize pain and fatigue.²⁸ The results from theme 2 also reflect the existing literature describing how young children and adolescents perceive SMDs as positive extensions of their bodies that support social and emotional development, along with decreased caregiver stress.^9,12,13,18 However, this theme was mixed, with responses also mirroring evidence documenting consistent challenges with repair and maintenance, barriers to participation, and device design.^7,15,16,21 Themes 3 and 4 correspond with the identified need for ongoing SMD development across the life span and reported frustration with a lack of adaptable SMDs across environments and stages, particularly during transition to adulthood.^3,28

Participant responses to theme 5 provide new evidence to enhance person- and family-centered care through sharing stories and resources about SMD experiences.⁵ This spontaneous networking was a powerful and unexpected occurrence across multiple focus groups, pointing to the need for greater engagement in general in the community with CP, but particularly to fill a knowledge gap related to SMD. Similarly, across themes 1 and 6, participant responses described frustrations with policy factors that influence access and customizability for SMD users, another knowledge gap that has not been widely explored in CP research to date.²⁶

From an overarching perspective, the study results point to focus areas across research, clinical practice, and policy and advocacy where SMD provision and the user experiences of individuals with CP may be enhanced. It also points to the need for additional participatory and cost-effectiveness research that will shift the design and provision of SMDs from transport to living (theme 4) and may address the barriers and limitations noted by participants. Doing so successfully will require ‘champions’ across all stakeholder groups locally and nationally as well as leveraging knowledge of how shared decision-making can enhance the cost-effectiveness and satisfaction of SMD support across the life span.^24,27

Limitations and future directions

This study has several limitations. First, while a national sample of participants was recruited, selection bias may have skewed responses since participants were mostly White and self-selected to take part in the SMD focus groups. Second, because policy and funding implications differ widely from state to state, and there is a lack of understanding about how funding agencies make SMD decisions, the absence of funding and policy representatives in our study is a clear limitation that will be rectified in future work. Third, the presence of a researcher with professional SMD experience has the potential to produce acquiescence bias, although the team attempted to mitigate this through unconditional positive regard as well as seeking out multiple and discordant/outlying viewpoints.³⁰ Finally, the large sample size resulted in a substantial qualitative data set. While this matched the aims of our study and allowed for greater potential of transferability (the qualitative equivalent of generalizability) of results that is often challenging with small samples, it led to increased heterogeneity in responses, which is accounted for by a higher number of themes.²⁹ Additionally, stakeholder advisory panelists were provided with explicit instructions for assisting with data coding and all codes were reviewed by the primary research team; coding idiosyncrasies among a large analysis team could have had an impact on the thematic results. This limitation was mitigated by creating an audit trail to document all coding decisions to ensure that data saturation was reached as well as sharing thematic results and descriptions with participants during member checking.³⁰

Shorter-term future work should include conducting focus groups with funding agency and policy representatives. Long-term work will include the implementation of a national ‘smart survey’ stratified by age and GMFCS level to inform the development of a clinical algorithm that supports SMD provision and educates stakeholders about common barriers and potential solutions to optimize the timing and provision of SMDs across the life span of individuals with CP.

Conclusion

This study represents one of the broadest SMD-focused qualitative studies to date within the community with CP and was a powerful way to foreground the lived experience of CP. The focus group results demonstrated six themes across the life span that may facilitate improved understanding of SMD-specific experiences and needs for individuals with CP. Participants were eager to take part in focus groups and have their voices heard, with impromptu community building and resource sharing occurring as an unexpected outcome of the study aims. This study indicates that the timing and provision of SMDs should be a dynamic, interactive, and shared decision-making process between the individual and/or family and healthcare providers, involving a systematic, process-oriented approach generated directly from the experiences and needs of the community with CP.

What this paper adds.

• Supportive mobility devices (SMDs) were most often equated with freedom, participation, and independence.

• Frustration with SMDs across the life span persisted with regard to design, function, cost, and maintenance.

• Stakeholders in the community with cerebral palsy are seeking greater networking and resource sharing to enhance SMD provision processes.

• Access to appropriate SMDs across the life span and the need for system improvement are critical.

Abbreviations:

SMD

Supportive mobility device

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.