How do adolescents with cerebral palsy participate? Learning from their personal experiences

Abstract Background Participation in society can be difficult for adolescents with cerebral palsy (CP). Information is often based on quantitative studies, and little is known about their personal participation experiences. Objective The aim of this study was to examine the participation experiences of adolescents (aged 12‐17 years) with CP. Methods A qualitative participatory research method was used. Twenty‐three semi‐structured open interviews were conducted with 13 male and 10 female adolescents (mean age 15 years) with CP. An interview checklist was developed jointly with adolescents with CP. This checklist ensured that the adolescents reflected on various participation areas, that is school, sports, health care and work. The analysis was based on principles of grounded theory. Findings From the adolescents’ experiences, 4 key categories were identified. One concerned participation, as such, expressed as “My participation experiences,” including experiences, thoughts and feelings while participating in daily life. Three other categories concerned factors that influence participation experiences, expressed as “My disability,” “Me as a person” and “My environment.” These 4 categories together formed a model showing the interactions and dynamics of participation according to adolescents with CP. Conclusion Adolescents with CP expressed their participation experiences, including various important influencing factors. This study conceptualized these experiences into a dynamic model. This experience‐based participation model may provide new, personalized perspectives for practice, for instance in rehabilitation, but also for schools and sports (or sports clubs) attended by adolescents. Focusing on personal and environmental factors might be the key to successful participation.


| INTRODUC TI ON
Cerebral palsy (CP) is one of the most common childhood disabilities. 1 Children with CP have permanent disorders of movement and posture, which limit their activity, and are often accompanied by disturbances of sensation, perception, cognition, communication and behaviour, as well as by epilepsy and secondary musculoskeletal problems. 2 CP can thus affect the development of daily functioning throughout the lifespan. 3 Consequently, participating in society with others on an equal basis can be difficult for children with CP.
The International Classification of Functioning, Disability and Health, Child and Youth version (ICF-CY) describes participation as "involvement in a life situation." Participation is seen as a dynamic interaction between a person and his/her environment. 4 As children develop, their life situation and social environment change and become more complex. Adolescents have to cope with physiological and emotional changes and are confronted with social transition. 5 This critical transition period can be particularly difficult for adolescents with a disability, such as CP. They are confronted with disability-related challenges during transitions. 6,7 For example, they may depend on their parents' assistance for personal care, while having a desire to become more autonomous. 6 Another example is that they may have to cope with negative comments from others. 7 How do adolescents with CP manage to participate during this transition period?
Most studies regarding the participation of persons with CP seem to have focused on the childhood period in general. [8][9][10] Fewer studies have focused specifically on adolescence. Donkervoort et al 11 showed that 20%-30% of adolescents with CP aged 16-20 years faced restrictions in daily life and social participation. Livingston et al 12 confirmed these findings and found that leisure activities, mobility, school and socialization were issues mentioned most frequently by adolescents with CP and their caregivers. Engel-Yeger et al found that adolescents aged 12-16 years with CP engaged in a smaller range of activities outside of school than typically developing adolescents. Compared to adolescents without CP, they performed these activities less frequently, more often alone and at home. 13 The European study by Michelsen et al 14 , involving a large group of adolescents with and without CP, confirmed these results. They found that adolescents with CP spent less time with friends and had less autonomy in their daily lives. From these studies, we can conclude that participation is indeed difficult and not self-evident for adolescents with CP.
The above-mentioned studies focused on the numbers of activities and restrictions for these adolescents and gave little insight into how adolescents experience their involvement in life situations. This conceptual distinction is consistent with the views of Imms et al 15 , who described that participation consists of attendance to certain activities, but also involvement (thoughts, feelings, personal stories, etc.) when doing so. In most studies published so far, the stories behind the numbers are lacking. This is a serious shortcoming, as, while growing older and making the transition into adulthood, adolescents develop their own ideas and experiences. If we want to understand their thoughts and feelings when being involved (or not) in daily life situations, we must ask the adolescents themselves about their personal experiences.
Although limited, several studies have described personal participation experiences (ie "involvement") of adolescents with CP. These studies appear to have focused mainly on sports. For impairments (and the consequences thereof) and social exclusion, adolescents with CP used strategies to cope with their CP, like keeping up their motivation and adapting to situations. 18 In accordance with the description of participation in ICF-CY 4 , these studies show that-from a subjective experiential perspectivethe environment, but also personal factors, plays an important role in enabling participation.
These studies concentrated on children with CP in a wide age range. Adolescents, however, are in a stage of transition and have to deal with a changing involvement in life situations. Whether someone perceives factors to be supportive or limiting also changes between childhood and adolescence, as Shimmel et al 16 emphasize. This would seem to call for a narrower focus on adolescents, not only regarding the age range of the study sample but also by letting their own perspective be the guiding principle; not talking about them, but with them. The main purpose of this study was to examine the personal participation experiences of adolescents (aged 12-17 years) with CP. To capture the full scope of their potential participation, we asked adolescents with CP to share their participation experiences in several daily life areas: school, sports, health care and work.

| Design
This was a qualitative study, using a participatory research design, and was a 10-year follow-up study of children with CP who were engaged in PERRIN, a large longitudinal research programme in the Netherlands. 19,20

| Experiential experts
To understand the experiences of adolescents, we asked them to be participants not only in the sense of study subjects. A group of 12 adolescents with CP participated as "ambassadors," involving them actively as experiential experts in all stages of the project.
The ambassadors were selected in co-operation with BOSK (Dutch Association of Physically Disabled Persons), whose team members also assisted the ambassadors during the process. Ambassadors gave input regarding the study protocol and the form and content of the interviews and were involved in analysis and member check.

| Participants
Eligible for participation were persons diagnosed with CP from existing PERRIN cohorts that started when they were 2-7 years old. 19,20 Ten years after their first recruitment in PERRIN, so at the age of 12-17 years, participants were recruited again for this study. Information letters, accompanied by an introductory letter from the relevant doctor, were sent to the adolescents and their parents. After at least 2 weeks, the adolescents and their parents were telephoned to enquire whether they were interested in participating. To be included, participants had to be able to take part in a verbal interview (which was decided in consultation with the parents). Figure 1 shows a flow chart of the sample selection and recruitment process.
A total of 23 adolescents, 13 male and ten female, with a mean age of 15 years 3 months (SD 2 years 3 months) participated. Table 1 shows participants' characteristics. People with CP are often char-

| Measurements
Semi-structured open interviews were held, using an interview checklist. The checklist was developed by the authors, based on input from the above-mentioned ambassadors (adolescents with CP collaborating in the project). After 2 interviews had been held, the interview checklist was evaluated by the authors and ambassadors and was found to provide sufficient information on participation experiences. The interview involved questions and a set of word cards in a box (see Appendix A). The interviewer started with an open question. Depending on the answers given by the participants, the interviewer then probed them to share their experiences. The word cards were used as a fun and active way to encourage respondents to share more experiences and to increase their involvement. 23

| Procedure
Interviews were carried out between March and November 2016.
The majority of the interviews (N = 21) were conducted by the first author of this article, while 2 interviews were conducted by the second author. Both authors had been trained in conducting interviews and were familiar with people with CP. The interviews took place at participants' homes and lasted 48 minutes on average (ranging from 20 to 89 minutes). All interviews were voicerecorded and archived within a protected digital environment and were transcribed verbatim. Verbatim transcripts were numbered and did not contain immediately identifiable information, such as names.

| Ethical considerations
The adolescents who participated, and their parents or legal representatives, gave their written informed consent before the interviews were conducted. Participants could discontinue the interview at any time without giving a reason. Before the interview, the adolescents agreed to the interview being audio-recorded and gave their verbal agreement again on tape. The medical ethics committee of the UMC Utrecht judged that this study (protocol no. 15-669/C) did not fall under the scope of the Dutch Medical Research Involving Human Subjects Act (WMO). The study was also approved by the internal scientific committee of De Hoogstraat Rehabilitation.

| Analysis
The MAXQDA software program, version 12, 24 was used for qualitative data analysis. The transcripts were analysed according to the open, axial and selective coding procedure described by Boeije. 25 This procedure is based on principles from grounded theory as described by Corbin and Strauss. 26 Principles of constant comparison and theoretical sensitivity were applied during the process of analysis 25,26 .
In the first stage, open coding and axial coding were applied iteratively, with the first and second authors working closely together.
They independently coded 4 interviews. Two of these interviews were also coded by 2 ambassadors in one-on-one meetings with the first author. Both authors discussed similarities and differences in coding until agreement was reached. After several meetings of reviewing and fine-tuning, a code tree was formed. All codes assigned by the ambassadors, accompanied by their comments and insights, were included in this process. The first author coded the remaining interviews, 2 of which were also coded again by 2 ambassadors.
Whenever new codes or categories emerged, these were discussed with the second author and the code tree was modified. The result of this stage was a definitive code tree in which all codes were clearly defined. In the second stage, selective coding, the identified codes were discussed within the context by both authors. Codes were merged into categories consisting of different themes. A preliminary thematic model was designed by the first and second authors and was presented to the other authors and discussed, which led to an even more fine-tuned thematic model.

| Member check
The thematic model with categories and themes that arose from the interviews were presented to and discussed with 3 of the ambassadors, 2 of whom were also interviewed as participants in this study. The ambassadors regarded the findings as recognizable and appropriate to their own situation and that of adolescents with CP in general. Following the member check, no further changes to the findings were made.

| FINDING S
Qualitative analysis of the interviews showed that the experiences of the respondents fell under 4 main categories: one regarding participation as such (i) and 3 regarding factors that influence(d) their participation (ii, iii and iv). We called these (i)

| My participation experiences
The respondents spoke about their participation or non-participation in several areas of life. They mentioned attending health care, school, sports and (future) work. The themes found to be related to their experiences, thoughts and feelings are described below.
When discussing the topic of health care, the experiences were varied. Respondents were familiar with rehabilitation centres, hospitals and various kinds of therapy, but also with the use of different assistive devices. They found it difficult to find the ap- the respondents experienced difficulties finding the right sport/sports club (search for suitable sports). Some respondents had tried several sports or clubs in the past, but stopped practicing sports as they were not able to participate with others, found it no more fun and/or experienced sports as painful or exhausting. One boy described how he tried playing soccer, but was not able to participate with team members:

| My disability
Respondents reported several factors related to their disability that influenced their participation. They mentioned cognitive and physical limitations. As regards physical limitations, respondents described suffering from fatigue and had limited energy, which influenced their ability to participate like adolescents without CP. For one girl, this was the reason why she went to school by bus instead of bicycle:

| Me as a person
Multiple factors regarding adolescents "as a person" were identified that influenced the respondents' participation experiences.
These personal factors were apparent within a broad range of contexts.
Several personality traits were identified that influenced the respondents' participation experiences, with positive and supportive personality traits being mentioned most. One 14-year-old girl described how having (more) self-confidence thanks to her girlfriends made her participate better in sports over the years: In the past, I wasn't able to do certain things in gym. Different ways of coping were mentioned in the interviews.
Respondents used a broad range of strategies to cope with daily life situations. Suitable strategies like asking for help and seeking support were mentioned, as well as less suitable strategies such as being seclusive and avoiding contacts.

| My environment
Participants described environmental factors that affected their participation. Within this key category, 2 subcategories were identified: (i) My social environment and (ii) My physical environment.

| My social environment
The social environment was experienced to be supportive as well as limiting as regards respondents' participation in all the different areas. Respondents experienced practical and emotional support from their social environment. Some respondents described having contacts with other disabled peers, which made them feel like they were "not the only one" with a disability. Furthermore, most respondents received support from family and friends, for example, helping with activities of daily living.
Receiving help from their family also had a downside, as some

| My physical environment
In their physical environment at school and at sports, the respond-  and more attention in current rehabilitation practice. 29 However, what our study adds is that the visibility of the disability seems to play an important role for adolescents when participating in daily life. This might be because adolescents with CP, as this study's respondents mentioned, have the need to be seen as normal. Visibility and the desire of adolescents with CP to be normal is something professionals in rehabilitation, school, sports or work or anyone in "their environment," should be sensitive to.

| D ISCUSS I ON
A strength of this study is that we engaged adolescents with CP in all aspects of the study. Not only did we ask the adolescents themselves about their experiences, we also involved 12 adolescents with CP, who were experiential experts, as ambassadors in our project. They were of great value in setting up and conducting our research, for example, when deciding upon the best way to interview other adolescents. As researchers, we thought photoelicitation would be a good method of interviewing, the ambassadors said that they would be more comfortable with simply being asked questions and using the set of word cards for the first conversation with someone they do not know. Also, their reflections on other adolescents′ experiences helped us choose the right labels for categories and themes in our analysis and confirmed our findings in the member check.
One limitation of this study is that adolescents with GMFCS level I were overrepresented. More severe levels of motor dysfunction are associated with greater intellectual disability and/or communication problems. 30 This might explain the overrepresentation, as the participants had to be able to take part in an interview. However, the respondents with level II-V who participated had similar participation experiences as those with level I. Still, we would recommend that future research focus more specifically on severe levels of CP as well. Understanding the experiences of adolescents with severe intellectual and/or physical disabilities requires other research methods, for example, by proxy, observation or physiological methods. 31,32 The experience-based participation model presented in this study may provide new perspectives for practice, such as in the field of (paediatric) rehabilitation, but also for schools, sports clubs and work which adolescents engage in. The adolescents with CP in our study were able to overcome disability-and non-disability-related challenges, but were dependent on their environment and personality in doing so. However, we still seem to focus too often on disability-related factors. Environmental and personal factors can be changed and might provide new perspectives for practice. Little research has been carried out into interventions focusing on personal and environmental factors 28 , even though these factors might be the key to successful participation.
The adolescents in our study reflected on factors that supported and limited their participation in several daily life areas. Our ambassadors reflected on the experiences of other adolescents as well, which shows their ability to contribute to discussions about the participation of adolescents. The ambassadors in this study absolutely created added value to this research, and we want to emphasize the importance of co-creation in research: involve them not only as participants, but also as contributors.

ACK N OWLED G EM ENTS
We would like to thank our Participation in Perspective (PiP) ambassadors, a group of 12 adolescents with CP, who were actively involved as experiential experts in all stages of the project: Anna van der Leest, Klem from BOSK for collaboration in the PiP project.

CO N FLI C T O F I NTE R E S T
The authors have no conflict of interests.