Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians

Abstract Background Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well‐being. Methods An integrated research team (including people with CP or other impairments, clinicians, and researchers) was formed to study participant‐identified research needs. A purposive sample of 16 people with CP (seven female), aged 17–29, Gross Motor Function Classification System (GMFCS) levels I–V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. Results This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment, and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. Discussion Body structure and function challenges impact participation in activities of daily living, threatening participants' ability to form positive identities and live meaningful lives. People with CP desire to work but may require additional training, accommodation, and support to do so. Environmental conditions, including relationships, supportive people, and accessibility, shape participants' health, well‐being, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services.


| INTRODUCTION
Health-formally defined by Huber et al. as "the ability to adapt and self-manage"-is a multidimensional concept integrating physical, emotional, social, and environmental aspects of people's lives (Huber et al., 2011;Kim & Fox, 2006;World Health Organization, 2002).
For people with childhood-onset disabilities such as cerebral palsy (CP), health challenges continue and evolve in adulthood. CP refers to a group of nonprogressive conditions that impact movement and posture and are associated with activity limitations (Rosenbaum et al., 2007). Despite being the most common childhood physical disability, there is a paucity of research about the long-term health outcomes of people with CP (Rosenbaum et al., 2007). This is especially true for aspects of health beyond the primary stereotypical motor impairments in children with CP and includes physical and mental health issues in adults.
Furthermore, we are starting to recognize mental health outcomes in people with CP, including depression (Gorter et al., 2014) and the associations between physical and mental health symptoms (Benner et al., 2017). A systematic review by Lindsay (2016) described the qualitative literature available on the health implications of young adults (under age 25) with CP (Lindsay, 2016). It identified a need for further research to understand the health outcomes of young people with CP in terms of employment, (intimate) relationships, and identity formation (Lindsay, 2016). The qualitative literature available is primarily on young adults less than 25 years old, so there is also a need for further research on young adults through age 30.
Though medical interventions have addressed some of the physical impairments, understanding the social and emotional outcomes for people with CP, as well as the barriers to and facilitators of these outcomes, will enable healthcare practitioners to better care for people CP as they age.
The World Health Organization's International Classification of Functioning, Disability, and Health (ICF) conceptualizes the biopsychosocial factors contributing to health and functioning (World Health Organization, 2002). Our research programme, called MyStory, has applied ICF concepts to a lifecourse health development approach (Palisano et al., 2016) to understand the implications of having CP on participation, brain function, and development in adolescents and young adults (aged 16-30 years). Young people with CP felt that the quantitative MyStory study did not adequately capture the reality of their lived experiences. Thus, a new integrated research team was formed, applying principles of participatory action research and engaging researchers from the MyStory project, clinicians and adults with CP, and other impairments to codesign this substudy: the MyVoice study. By enhancing our understanding of the impact of impaired health (particularly the role of chronic stress) on brain function, we hoped to discover interventions to enable youth with CP to achieve full participation in their desired roles throughout life. The aim of MyVoice was thus to blend lived experience with rigorous research methods to capture the intricate reality of young adults with CP-their physical, mental, and emotional health-as they navigate their life with a complex health condition.

| Population
This study was a qualitative exploration within a large, prospective cohort study exploring "brain-behaviour correlates of health and well-being in adolescents and young adults (

| Design and methodology
Interpretive description (ID) is a methodologically eclectic approach to qualitative research for allied health disciplines. It extends beyond simple descriptions of experiences to facilitate the interpretation of

Key Messages
• Including lived experiences in research enriches our understanding of health and development.
• Using a lifecourse health development approach is essential for individuals with CP and should inform child and adult care services.
• Comprehensive care is essential for young people (adolescents/adults) given their medical needs and the multifaceted aspects of well-being.
• Medical care and counselling people with CP needs to include discussions about mental health, pain, and sexual health/identity, especially in young adulthood.
complex clinical experiences to inform practice (Thorne, Kirkham, & O'Flynn-Magee, 2004). ID allows lived experience to be captured as high-quality research evidence, enabling clinicians to better understand the reality of participants' lives, and was selected as the guiding framework for this study.

| Sample
Purposive sampling was used to identify a diverse sample of participants who would be able to provide rich descriptions of the topic of interest (Creswel, 2016). The research team selectively invited participants with diverse gross motor function (determined by selfreported GMFCS level; Palisano et al., 2008), as well as gender.
The only exclusion criteria for this qualitative study were non-English speakers, as the focus groups (FGs) were conducted in English, and the inability to participate in an FG (physically or over the phone) and to answer open-ended questions, as this was considered a serious impediment to participation.

| Data collection
Two researchers (O. H., research coordinator with a child with Down syndrome, and M. F., PhD candidate with CP) facilitated the FGs.
FGs were used to collect data because their inherent group dynamics are an effective way to generate social knowledge related to beliefs and attitudes that underlie behaviour (Thorne, 2008). As many of the topics discussed in the projects can be socially stigmatizing (e.g., mental health, pain management, and stress), especially as they are not often discussed in the context of CP, FGs provide a safe environment for discussion of these topics (Håkanson, Sahlberg-Blom, Ternestedt, & Nyhlin, 2012;. A semistructured interview guide (see Appendix A) was codeveloped with the research team, with validity of the interview guide established using various perspectives, including those from clinicians and people with lived experience (two adults with CP and a parent of a child with Down syndrome). Discussions were audio-recorded and transcribed verbatim. The FGs took place in community settings with the option for teleconferencing to accommodate participants with mobility difficulties. Participants with speaking difficulties could complete written answers to questions in the interview guide in addition to their FG participation. Three 2-hour FGs were conducted with four to seven participants in each.
Together, the transcribed information and the facilitators' field notes formed the raw data for analysis. Member checking with participants (via emailed transcript review) was completed to verify accuracy and ensure that responses were faithfully recorded; this was especially important for participants who had speech difficulties. To preserve confidentiality, all identity-linked information was anonymized; each participant chose a pseudonym to personalize their story comfortably in this paper.

| Analysis
One researcher (J. H., a research student with a childhood onset physical disability) read the transcripts and listened to the audio-recordings several times to ensure the accuracy of the transcription and aid in the analysis. To derive preliminary themes and categories inductively for coding, two researchers (O. H. and J. H.) independently reviewed and coded one FG transcript selected by the research team as representative of the sample. Codes were discussed with the larger research team, following agreement on preliminary codes. J. H. and O. H. coded the remaining transcripts. After initial coding, transcripts were reread to ensure that coding definitions were consistently applied (Corbin & Strauss, 1990;Hewitt-Taylor, 2001). After all transcripts had been coded, preliminary themes identified, and analytical structure determined, we used peer debriefing and triangulation of research team members that included individuals with CP to ensure credibility.

| RESULTS
Sixteen individuals (across all GMFCS levels) consented to participate in FGs. Gender distribution included seven females and nine males.
Participant characteristics are presented in Table 1.
Four main themes emerged from the FGs: (1) health, (2) meaningful participation, (3) impact of the environment, and (4) identity for young people with CP. Subthemes were also identified and included to enhance readability. Relevant quotes for each theme and subtheme are available in Table 2.

| Theme 1: Health
Body structure and function aspects of health were discussed extensively in all FGs. For many participants, this was their first time discussing their physical and mental health challenges with peers, and several participants were surprised that other young adults with CP faced similar challenges.

| Subtheme (i): Physical health and illness experience
Fatigue, pain, and anxiety (often about pain) were reported in participants' daily lives, activities, and functioning. Several participants described painful and often debilitating spasms that interfere with sleep, work, and daily functioning. Other pain reports included back pain due to sitting or physically demanding jobs. There were more acute causes, such as pain from surgery and recurring kidney stones that went undiagnosed.
Getting care for pain and physical health issues was shaped by the experience of having CP. Many participants described challenges accessing adult healthcare providers (HCPs), especially HCPs who understood their CP in the context of their physical and mental health.
There was also extensive discussion about the lack of adult services.

| Subtheme (ii): Mental health
Participants also discussed the impacts of mental health on their daily lives. Stressors both directly related to CP (e.g., making healthcare decisions and surgeries) and unrelated (school, work, relationships, finances, etc.) impacted the mental health and general well-being of almost all participants. Depression and anxiety were frequently reported among participants, though many lacked a formal diagnosis and consequently lacked support. One poignant example is Joy's experience: She spoke extensively about her inability to access services and how this influenced her mental health and well-being. She experienced fatigue and mental health ramifications associated with CP but was unable to access services and funding because she had "mild" CP and lacked a formal mental health diagnosis. Joy also shared her experience of homelessness. Participants were open and honest in sharing variable coping strategies to manage their physical and mental health challenges, including two participants reporting excessive substance use. Others reported using pain killers, medicinal cannabis, acupuncture, and massages to cope. A few participants described other coping strategies including reading books, being physically active, art, video gaming, or voice acting. Social connectedness was emphasized as an important coping strategy.

| Theme 2: Meaningful participation
Most participants chose to introduce themselves with the different activities in which they participate-including work, school, and recreational opportunities (as opposed to introductions based on diagnosis). It became obvious that participation was just as important, if not more so, as their underlying health condition. These various activities were imperative for the young adults to achieve "normality." Participants did not talk about goals related to their CP (walking, achieving better gross or fine motor function, etc.); rather, they discussed goals related to sport, education, employment, and other recreation.

| Subtheme (i): Work and recreation
As examples of participation, sporting activities ranged from soccer, ice hockey, and field hockey to various parasports and adaptive fitness programmes. Artistic activities were also identified by a range of participants; for some, it was a method of coping with the lack of relationships or pain. One participant described his artistic endeavours as "the most positive thing" in his life. For one costume designer, the artistic hobby provided an unfolding employment opportunity. In most instances, participants were self-employed or had entrylevel jobs such as customer service, social media, or camp counselling.
Many chose to include in their introductions the positions they have been searching for but have yet to get. Participants emphasized the importance of participation to their well-being and as an important aspect of their identity.  Participants reported complex dynamics with (in) the family that were influencing their experience and participation as adults with CP. Joy discussed her role as her mother's primary caregiver, a role further complicated by her CP. The discussions with participants emphasized the importance of family in the lives of adults with CP; family served as both a barrier and facilitator to their well-being.

| Subtheme (ii): Intimate and peer relationships
Several participants alluded to an interest in having intimate relationships. Participants described previous relationships, many of which were with able-bodied individuals. Some participants were currently in a relationship, and many discussed the challenges of asking for help from their significant other. Two participants who self-identified as LGBTQ+ describe how intersections influenced them (see further CP and identity). Several participants shared their thoughts and experience with stigma and relationships.
Relationships with peers were very important for participants' well-being and positive identity. Some members of the group reported very few problems making friends with peers and alluded to the positive influence of the social relationships on their wellbeing. On the other hand, some participants reported challenges making friends, especially at university. Most participants described having a large proportion of "able-bodied" friends and recognized the importance of having a balance between disabled and ablebodied friends. Some participants also described becoming less anxious about being judged by people as they aged, making it easier to make friends as adults.

| Subtheme (iii): Accessibility
Accessibility in public, social, and recreational places where people with CP could intermingle with others was an extensively discussed environmental factor. Accessibility was particularly pronounced when participants tried to secure sustainable employment and financial independence. Some of the reported challenges are similar to those experienced by their peers without CP (e.g., finding full-time teaching positions and balancing social life with long hours). Many limitations, however, were due explicitly to the CP: pain and having to rely on heavy pain killers, other codisabilities (visuospatial and/or learning), and lack of meaningful inclusion in diversity enhancement programmes. A distinct example of discrimination in the hiring process came from Louise who was applying for teaching jobs and was rejected because of her wheelchair use.
Although several participants discussed their ability to participate in social and recreation opportunities, many depicted a lack of physical accessibility as a significant barrier to participation. This was especially true among wheelchair users. Many participants discussed at length the need for increased physical accessibility, especially in social environments and meeting places (such as bars and restaurants). Accessibility was discussed at length in all FGs.

| Theme 4: CP and identity
As participants had a wide range of GMFCS levels and personal experiences with CP, their apparent desire to identify as part of a group of individuals with CP varied a fair amount. Only two participants immediately identified their CP as a part of their introductions: Kathy and Peter (whose father spoke on his behalf). Other participants had hints or subtle undertones of the effects of CP on their self-concepts; however, only upon further probing (e.g., Why did you define yourself in this manner?) did participants explain the effects CP has had on their identifiers. For example, one person introduced himself as an artist and later revealed that "hospital art" was important to him as it helped him get through his surgeries and frequent childhood hospitalizations. On the other hand, Rita, a high school student with very mild CP, chose to introduce herself as a soccer and field hockey player because she felt proud that she could play sports while realizing that it is hard for others with disabilities.
Several participants reported challenges when navigating their experience related to their CP/disability. The challenges were particularly pronounced for those participants with the mild and so-called "invisible" form of CP.
Intersections of identity were particularly pronounced in the discussions in one FG. A very telling example came from one participant who identified as LGBTQ+ and was quick to educate another participant about the meaning of identity intersections.

| DISCUSSION
This qualitative study, initiated in response to participants' desire to share their lived experiences, illustrates these experiences and some consequences of growing up with CP-namely, the physical and mental health challenges, the importance of meaningful participation to improve quality of life, the impact of the environment on well-being and health, and identity formation. Across GMFCS levels, participants shared challenges related to accessibility of healthcare, social/environmental supports, relationships, and sustainable employment.
As children with CP become adults, their health needs extend beyond physical and mobility impairments: Pain, fatigue, and mental health challenges become more prominent (Lindsay, 2016;Mesterman et al., 2010;Sienko, 2018 there needs to be more awareness that anxiety and depression, pain, fatigue, and weakness are common in people with CP-but not automatically part of CP-and that environmental and attitudinal factors may play a pivotal role in the development of secondary health issues and accelerated ageing with disability (Putnam, 2002;van der Slot et al., 2010). Hence, there is a need for a preventative approach focusing on healthy development and early interventions to optimize function and health (Bogart, 2014). Body structure and function challenges threaten youths' ability to participate in activities of daily living, have a career, and engage socially, thus threatening their ability to form positive identities and live meaningful lives as adults.
Work participation was a major subject of the FGs, with emphasis placed on barriers to engaging in meaningful, educationappropriate employment. This is in line with recent literature assessing employment among persons with average intelligence with CP that found higher rates of unemployment, especially for those requiring workplace accommodation (Verhoef et al., 2014). There is a paucity of research about how youth with CP navigate the process of finding meaningful, education/skill-appropriate employment. Their descriptions and realities of finding and keeping jobs outline challenges and strategies used to mitigate barriers related to disclosure, requesting accommodation and pursuing further education. It is imperative for HCPs to be cognizant that, like everyone else, individuals with CP desire to work. A recent scoping review covering multiple disabilities underscores the importance of paid work, as it serves as a source not only of financial independence but also of socialization and positive identity (Saunders & Nedelec, 2014). The challenges participants described when trying to secure a financially sustainable position reflect the trend of reliance on disability benefits and social assistance (Verhoof, Maurice-Stam, Heymans, & Grootenhuis, 2012). Life skills programmes and resources are needed to help young people acquire interviewing skills and strategies to manage disability disclosure and navigate job applications. Facilitating employment opportunities and skill development for young people with CP not only benefits the well-being of the person and their family but also enables them to rely on their own income rather than social services income supports.
Environmental conditions, including relationships, supportive people, and environmental accessibility shaped participants' health, wellbeing, and identity. Previous literature suggests that youth with disabilities are at a higher risk of being bullied and socially excluded and often lack friendships (Lindsay & McPherson, 2012). Friendships are a key focus of positive relationships and social and emotional development (Rosenbaum & Gorter, 2012 supports are necessary to promote interactions with peers who have similar health conditions. Such efforts should also include discussions on potential or actual challenges the young adult may experience related to relationships and use a strengths-based approach (i.e., sharing practical strategies related to social interactions). It is therefore critical for HCPs to address and advocate for these issues, because social isolation and exclusion are associated with higher rates of anxiety, depression, and poor quality of life (Seng, Lopez, Sperlich, Hamama, & Reed Meldrum, 2012).