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‘I Dare to Be Myself.’ The Value of Peer Communities in Adapted Physical Activity Interventions for Young People and Adults with Cerebral Palsy

Authors:

Mie Maar Andersen ,

University of Copenhagen, DK
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Helle Winther

University of Copenhagen, DK
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Abstract

Rehabilitation for people with cerebral palsy has traditionally focused on the physical body. This study has a psychosocial focus and investigates the experience of being part of a peer community at a camp. Two semi-structured interviews with 16 participants were carried out. The first interview aimed at getting a sense of the participants and their life situation, and the second at getting a sense of their experiences at camp. Seven themes were identified in the thematic analysis: belonging, social security, group-synergy, symmetry in abilities, being a resource, being understood, and left alone in the period after camp.

The findings indicate that peer communities for people with cerebral palsy can improve their self-perception and situated participation. Therefore, clinical recommendations and strategies should consider including peer communities. However, we must be aware of the transition from segregated interventions to everyday life, as this process may be difficult and inhibit the potential.

How to Cite: Andersen, M.M. and Winther, H., 2023. ‘I Dare to Be Myself.’ The Value of Peer Communities in Adapted Physical Activity Interventions for Young People and Adults with Cerebral Palsy. Scandinavian Journal of Disability Research, 25(1), pp.1–14. DOI: http://doi.org/10.16993/sjdr.806
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  Published on 11 Jan 2023
 Accepted on 09 Dec 2022            Submitted on 02 Mar 2021

1. Introduction

Rehabilitation for people with cerebral palsy (CP) has traditionally focused on an enhancement of the physical body. This focus may be linked to the most used definition of CP and to traditions in the health care system. Cerebral palsy is defined as ‘a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain’ (Rosenbaum et al. 2007: 9). This definition refers to limited motor functions as the main adversity and as the main cause of activity limitations. This correlation between physical factors and human behaviour is reflected in clinical practice, guidelines and strategies for rehabilitation and treatment of CP in the healthcare system (Novak et al. 2013). For treatment and rehabilitation in relation to CP, the most used methods in the healthcare system are standard physiotherapeutic and occupational therapy, orthopaedic surgery, and anti-spastic medical treatment (Wang & Yan 2018). These interventions rest on the hypothesis that the improved motor control and function provided by such methods lead to better functioning1 (Barnes 2001).

Despite the correlation between motor function and functioning, research has shown that improvements of physical aspects do not have a strong clinical effect on participation and activity in daily life (Aisen et al. 2011; Novak 2013). This indicates that while improvements in physical functions can be beneficial to some extent, they do not accommodate the complexity related to living with CP. According to Martiny (2015), psychosocial challenges related to people with CP, such as fundamental bodily uncertainty rooted in self-doubt and pervasive social anxiety, also need to be addressed.

If we recognise that the functional challenges of people with CP are grounded in both physical and psychosocial factors, we need intervention strategies that address and accommodate both groups of factors. At present, research focusing on psychosocial factors is underrepresented, and in general clinical practice, psychosocial factors are still often neglected in rehabilitative efforts.

To better understand how psychosocial factors can be helpful in rehabilitative practice, this paper aims to gather more insights on the role of peer communities for people with CP in a rehabilitative adapted physical activity setting.

In the current research literature, several studies have explored the meaning of psychosocial factors by investigating various adapted physical activity programmes. In these studies, the peer community is often highlighted as a significant element. However, none of these studies have solely focused on the experience and meaning of being in a peer community in a rehabilitative adapted physical activity setting. Thus, there is a research gap and a need for elucidating this topic.

In the following, we give an overview of the studies that describe dimensions of the peer community.

In a systematic review, Powrie et al. (2015) investigated the meaning of leisure activities for children and young people with disabilities. All the included studies reported the importance of social themes such as friendships, feelings of belonging and social connectedness as positive factors in meaning creation for children and young people with disabilities. Furthermore, Powrie et al. (2015: 1006–1008) conclude that ‘[f]riendship, being with others, and a sense of belonging to a social group often seemed to be more important to CYP [children and young people] than the leisure activity itself’. The study also emphasises the value of segregated settings such as camps, as they provide a special sense of connectedness with others with disabilities (ibid.).

In relation to segregated settings, Standal and Jespersen (2008) focus on the learning potentials associated with being in a peer community in a rehabilitative movement camp setting. In their study, the most prominent finding is that the participants learn a lot by observing and modelling themselves on each other. Furthermore, the discussions, negotiations of meanings, and shared experiences in the group of peers help the participants form a realistic interpretation of their possibilities in everyday life.

In other camp studies, the value of the peer element is highlighted too. Dawson and Liddicoat (2009) describe the experiences from a summer camp for adults with CP and found that being part of a supportive community was the most prominent theme. Many of the participants described the camp and the other members as being like a loving home and a family that had great respect for each other. Such a sense of belonging, respect and acceptance caused by shared life experiences and a deep understanding is seen in several other studies that investigate the experience of being at a camp for people with disabilities (Aggerholm & Moltke Martiny 2017; Ashton-Shaeffer et al. 2001; Devine and Dawson 2010; Goodwin et al. 2011; Goodwin & Samples 2005; McAvoy et al. 2006; Nyquist et al. 2019). In some of these studies, other elements of the peer community are also emphasised. Thus, a common finding is that being in a peer community at camp helps the participants express their true self as well as develop an empowered sense of self (ibid.).

This paper proposes that healthcare systems would benefit from an increased understanding of how being a part of a peer movement setting may create meaning and value for people with CP. This might enable healthcare systems to better integrate social dimensions into intervention and rehabilitation strategies and guidelines for people with CP. Although this paper focuses on CP, it is also relevant to other target groups and contexts related to disability and rehabilitation.

To investigate how people with CP experience being a part of a peer community at a four-day sports camp, we use a phenomenological approach and semi-structured interviews. Furthermore, we discuss how dimensions of the peer community can be integrated and provide benefits in a rehabilitation context by reflecting on theories that link social and environmental factors with how people act and become motivated (Bandura 1977; Goffman 2009).

1.1 Theoretical background

Bandura’s (1977) concept of self-efficacy is ‘(…) concerned with how people judge their capabilities and how, through their self-percepts of efficacy, they affect their motivation and behavior’ (Bandura 1982: 122). Expectations of self-efficacy can thus determine whether a person will be able to exhibit coping behaviour and how much effort they will put into the process. A high level of self-efficacy will thus potentially stimulate more active and engaging behaviour in people with CP. In a social perspective, Bandura states that self-efficacy is highly influenced by the social relations we interact with and are surrounded by. In addition to stressing the importance of having mastery experiences and positive affective/physiological feedback, Bandura (1997) also proposes two social factors that people look at when evaluating their levels of self-efficacy – vicarious experiences and verbal persuasion. Vicarious experience refers to learning through observations of the actions of others, and verbal persuasion refers to the fact that our social relations can strengthen our belief in ourselves.

In accordance with Bandura, Goffman’s (2009) theory of stigma focuses on the importance of being in an environment with ‘like-situated individuals’. In Goffman’s terminology, people who are similar to one another are referred to as ‘the own’. Furthermore, a group of people who carry the same stigma is known as an ‘in-group’. This in-group is a group of people who, unlike much of the rest of society, are seen as sympathetic toward others from the same group, as they through their own experiences know exactly what it means to be a person who carries the same stigma. According to Goffman, this relationship between relatable people can enhance the creation of a safe environment where a sense of acceptance and understanding can be achieved (ibid.). Such social experiences contrast with many other social situations in which the stigmatised person will often be labelled as being different and will thus often feel socially excluded.

When we link and use Bandura and Goffman, we are aware that Bandura is psychologically oriented and Goffman sociologically oriented. This means that Bandura is more concerned with the meaning for the individual, while Goffman places more emphasis on the group as a whole in a societal context. Although they have different theoretical and sometimes contradictory positions, we believe that the theories can complement each other and create a better understanding of the peer community at camp.

2. Method

2.1 Phenomenological approach and method

The present study uses an approach inspired by phenomenology to elucidate the meaning of peer communities, as the phenomenological approach allows us to study how people create meaning from the subjective experiences (van Manen 2016). From a phenomenological perspective, the lifeworld represents the individual’s subjective way of perceiving and being in the world (Mortari & Massimiliano 2010; van Manen 2016). The lifeworld in focus in this paper is the world the participants experience in a first-person interconnected embodied perspective when participating in the peer community at a sports camp.

This approach was chosen for several reasons. First, a phenomenologically inspired approach can help us understand the significant nuances in peer communities that can influence interventions. Second, this study wishes to give a voice to people with CP. Third, because movement activities are connected to the subjective and embodied experiences of the participants, we found the phenomenological approach useful, as it provides a way of accessing the world as we experience it (van Manen 2016); that is, it is a method for questioning – not for answering (ibid.). Therefore, it is also important to adopt a receptive attitude as researchers and to create what Mortari and Massimiliano (2010) call a void in the mind. In such an empty space, the experiences of the participants may be received without being grasped beforehand within conceptual grids (ibid.).

Finally, the phenomenological approach may uncover aspects of peer communities that researchers have not been aware of before. As van Manen (2016: 31) states, ‘[e]ven the most ordinary experience may bring us to a sense of wonder’.

2.2 Context – sports camp

The context of this study was four separate 4–6-day-long sports camps for people with CP arranged by the Elsass Foundation.

The Elsass Foundation offers camps for people with CP aged 5–60+ years who have different levels of disability. The camps are organised based on age and level of physical ability. In this study, we have included four camps, which are presented in Table 1.

Table 1

The four camps.


PARTICIPANTS LOCATION AGE CONDITION

Camp 1 20 Elsass Foundation 10–13 Able to walk

Camp 2 16 Elsass Foundation 14–18 Able to walk

Camp 3 11 Egmont Folk High School 10–17 Wheelchair bound

Camp 4 10 Club la Santa 30–60 Able to walk

Despite a great range in age and physical abilities, all camps are basically designed in the same way. All camps include accommodation, the participants share rooms with other participants, and everybody participates in all meals and follows the same activity programme. The camps are offered at different locations, and all participants at the camp for wheelchair users are accompanied by their private helper.

While the activity programme may differ from camp to camp, it always follows the same structure. This structure builds on three models of psychological resilience (the protective, compensatory and challenge models) (Borger 2010). At the beginning of the camp, activities focus on social games and teambuilding activities to create a safe, trusting atmosphere and to help the participants get to know another (protective model). Then the participants are presented with different activities such as martial arts, stand-up paddle board or trampolining, to let them experience that they can participate in and do many activities as long as they have a flexible and creative mindset (compensatory model). Finally, the participants are presented with adventure activities such as climbing, kayaking or jumping from a diving board (challenge model). These activities aim to challenge the perceived abilities of the participants and thereby provide them with confrontational and successful experiences that have the potential to (re)frame their perspective on themselves and their possibilities.

In addition to the adapted physical activities, two group talks are arranged every morning and afternoon. The talks aim to stimulate reflection and create a bridge between the participants’ personal stories, expectations and experiences at camp. For a further elaboration of the theoretical and methodological design of the camp see the camp manual (Andersen 2016).

2.3 Participants

After the enrolment deadline for the camps, the professional team that was in charge of the camps reviewed each participant’s information. Four participants at each camp were selected for the study. Before the final selection, all participants had been informed (by email and phone call) about the study and interviews, as well as their rights, and were asked to participate in the study. All of the 16 selected participants accepted the invitation and signed a form of consent. For participants younger than 18 years old, parents signed the form of consent. To ensure that all participants understood the terms, they were reminded of their rights and the purpose of the study at the first interview.

The participants were selected to obtain a group of participants that displayed the greatest diversity in gender, age, level of ability/disability and camp experiences.

All 16 participants had CP. Twelve of the participants were classified as levels I and II on the Gross Motor Function Classification System (GMFCS) (Palisano et al. 2008). This ensured that they could perform gross motor skills such as walking, running and jumping. The remaining four participants were classified as levels III and IV. Even though two of these participants could walk with assistance, all used a wheelchair most of the time, and needed support in many activities.

Participants have been anonymised in this article. The names used in the paper were created by the authors.

2.4 Data creation

All participants engaged in two individual semi-structured interviews (Kvale & Brinkmann 2009; Smith & Sparkes 2018). This interview format was chosen because it is considered to be one of the best methods for accessing the experiences and narratives of others as well as accessing how they view themselves and the world around them (Smith & Sparkes 2018). This type of interview enables nuanced and intensive analysis of a relatively limited number of participants’ experiences of participating in the sports camp.

Prior to the interviews, one of the authors who participated in the camp as a practitioner researcher observed the participants. The findings in this article are not based directly on these observations; however, knowledge gained from these observations enabled the interviewer to ask the participants more specific, nuanced and curious questions about their experiences.

The first interviews took place one month before the camp and focused on the participants’ lifeworlds to get a first-person insight into how the participants experience their own lives. In the interview, the participants were asked to describe their background, themselves, their interests, everyday routines, social relationships and values, as well as their personal resources and challenges.

The second interviews took place no later than one week after the camp ended and focused on the participants’ camp experiences. From a phenomenological point of view, we were interested in examining how the participants experienced, perceived and interpreted being part of the peer community at camp (van Manen 2016).

When planning the interviews, our personal experience from our previous work with people with CP was taken into consideration. For example, some people with CP find it difficult to reflect in a nuanced manner on open and abstract questions related to experiences and perceptions. To accommodate this perceived challenge, we used coaching cards that displayed many different kinds of situations, emotions and symbols. The cards were used to help the participants talk about metaphors that described their embodied experiences of the camp, which provided the participants with another way of expressing their feelings and experiences (Stelter 2012).

The use of these coaching cards underscores why the phenomenologically inspired approach is relevant in this study as the cards helped the participants express their embodied experiences. The cards thereby gave us all a possibility to bridge the landscape between language and experiences (van Manen 2016). Figure 1 shows the cards chosen by one of the participants during an interview.

Example of coaching cards chosen by participant
Figure 1 

Example of coaching cards chosen by participant.

2.5 Analysis strategy

A thematic analysis using the three-step method described by Braun and Clarke (2006) was conducted to identify patterns and key themes in the data. This strategy was used to clarify the participants’ expressions by identifying actions, concepts, experiences and characteristics.

First, all the interviews were transcribed and read to obtain an impression of the data as a whole. Second, the words of the core message of each response were identified and collected. Thus, all the experiences the participants expressed in the interviews were summarized in shorter statements for clarity. A data-driven code was added to each of the short statements. As the term indicates, data-driven codes are not established from the beginning but are developed ad hoc in the process itself on the basis of the collected data material (Kvale & Brinkmann 2009). Third, a final reduction was made that grouped all similar initial data-driven codes into key themes that were to represent the essence of the phenomenon ‘being a part of a peer community at camp’.

The themes presented in the following section describe how being part of a peer community at camp was experienced by the participants.

3. Findings

In this section we elaborate on how the participants experience being part of the peer community at camp. Our thematic analysis identified seven themes central to the participants’ experiences of the peer community (Figure 2).

The seven themes
Figure 2 

The seven themes.

3.1 Different >< Belonging ‘You don’t have to adapt – you already fit in’

Most of the participants experience themselves as someone who is different at school or at work. This is a role and position in society that many participants connect with either their struggle to try to fit in or their struggle to explain themselves to their surroundings. At camp, this is different. When they were at camp, they found themselves among peers. This gave them an experience of belonging, which Margrethe (42 years old) expresses as: ‘At camp you don’t have to adapt – you already fit in. In everyday life you must adapt all the time.’ In contrast to the participants’ everyday life, the component that usually makes them stand out–CP–is what makes them fit in at camp. Using a metaphor of a gospel choir, Amanda (30 years old) describes this condition of belonging as:

‘I have chosen a picture of a gospel choir that just goes completely crazy. They are in the same jerseys and that kind of shows what I feel the camp is for me – unity and equality somehow. There isn’t anyone who really sticks out, and if we do, we all do it together. And it may well be that you don’t follow the beat completely, and it may well be that you hit a false note, but when there are enough of you, no one will ever notice.’

What Amanda is indicating in the quote above is the paradox of experiencing being similar and equal as a result of being totally different. Everybody is different, nobody is following the exact same beat, but this is exactly what stimulates the great harmony. If everybody is different, nobody stands out.

Nevertheless, one experience by Mathilde (16 years old) was very different from the experiences of the other participants. At the camp for teenagers, Mathilde was the only girl who did not know any of the other participants prior to the camp. This made her feel alone, uninteresting and ignored by the other girls. This experience prompts her to say, ‘it could be a little tough to be there’, which indicates that the feeling of belonging does not always occur simply as a result of being at camp.

Mathilde had struggled to become part of the social community in her everyday life. However, she expresses that the exclusion at the camp hit harder, as she had expected and hoped that she would fit in. This shows that the feelings of community created at such a camp do not necessarily extend to all participants, and that a feeling of community among some can seem to leave others with a feeling of exclusion.

3.2 Social insecurity >< Social security ‘You dare to show who you are’

Many of the interviewed participants describe how they often take a passive role in social contexts because they feel shy, insecure, left behind or find that being passive is what is expected of them. An example of this is Paul (60 years old), who struggles with insecurity related to talking because of his speech impediment. He explains that he gets nervous when speaking to people he does not know, and even at family parties he rarely speaks. Nevertheless, he finds the courage to show his most vulnerable side at camp. He dares to speak up and even gives a talk in front of the entire group about his life – a performance he credits to the feeling of social security in the group: ‘you feel so damn safe here’.

The feeling of social security and support that gives many of the participants the courage to be vulnerable is closely connected to a sense of freedom, which the participant Sofie (16 years old) described as:

‘Camp is freedom for me. Huge freedom. Because I’m together with people who are a bit like me. They’re in the same situation and can’t make their arms and legs do as they like. It’s just been so great. (…) I feel more comfortable with myself in some way. You dare to show who you are. I might be a little shy, but when I’m with you, it’s actually not that bad.’

We can see that the theme of social security is central to Sofie’s reflections when she uses the word ‘dare’ when she describes showing who she is. This suggests that she, like Paul, experiences how a feeling of social security stimulates social courage. In addition, it may indicate that she usually hides and limits herself. For both Paul and Sofie, social security sets them free and stimulates a more authentic and engaging behaviour in contrast to how they both describe their usual more unsociable passive behaviour.

The experiences of Paul and Sofie are representative for many of the participants, but not all. Three of the teen boys did not find that they had been braver than they normally were. They appear confident and talk about believing in themselves and having a good social community at home. For them, the camp is a good experience, but they do not describe it as significant for them in their personal development.

3.3 Lonely struggle >< Dynamic synergy ‘Ten individuals and then we just become one’

A common reflection from the everyday lives of the participants is an experience of being alone with their struggles. In this context, the symbol of the holding hands, which was chosen by 13 out of 16 participants, is interpreted by the participants in a more dynamic way. The image of the holding hands does not exclusively reflect social security but becomes a metaphor for a unit that collaborates closely and creates the energy and synergy to lift and push the participants to another ability level. As Margrethe (43 years old) explains: ‘Together we are stronger and can do virtually anything. (…) That’s how it is when you are in a community where you feel like you are one, even if you are ten. Perhaps you can really say it like that – ten individuals and then we just become one.’

The synergy of the group as a unit working together is described by many of the participants as crucial for the things they accomplish and can do at the camp. The synergy creates a significant group strength that influences the participants’ actions and belief in themselves. Margrethe reflects on the meaning of the group in relation to the time after camp in the following manner:

‘Well actually, there is also a great contrast. Because you get the feeling that you can handle the whole world, but at the same time, the world becomes very big when you come home again. Suddenly you stand alone. So, if you’re in a challenging situation, there’s nobody to give a high five and say, “you can do it”.’

This statement from Margrethe indicates that the lonely struggle when she is back at home may be perceived as even bigger than it was before she went to camp. In addition, this perception leads to frustration because she cannot transfer the feeling of unity to her everyday life.

3.4 Asymmetric >< Symmetric ‘If they do it, I can do it too’

Some of the participants attend special-needs schools that cater to people with disabilities, but most school-age participants attend normal schools. Attending a normal school leads to many participants experiencing an asymmetric relationship between their own abilities and the abilities of their school peers. This asymmetry and confrontational comparison causes self-doubt and limits the social life of people with CP, as many of them opt out of physical education classes and active breaks during the school day. At camp, this is different, which Oliver (14 years old) reflects on: ‘It’s much easier to do things together because we are at the same level. You can easily play games, run and play football because people have the same problems as you do.’

The experience of being able to participate as a result of the same ability level is shared by all participants. Furthermore, this symmetry in abilities seems to have an additional valuable affect when participants find themselves in a challenging situation. This is described by Oliver when he recounts an experience from the climbing track: ‘That was why I signed up to be in the back of the climbing track. Because it always gives me some inspiration when I see how the others do it. It helps me a lot. Because if they do it, I can do it too.’

This statement shows that a challenge managed by the others is experienced as transferable to Oliver’s own perceived abilities. It creates a belief in himself as a result of a mirror effect, which is an effect he does not benefit from in his everyday life where he perceives himself as less capable in relation to his classmates.

3.5 Burden >< Resource ‘I can make a big difference’

While in their everyday lives many of the participants are the ones who need the most help and adjustments, at camp they find that the symmetry in their camp relationships changes their social position. Suddenly, they do not only get help, they are also in a position where they take responsibility and offer their help to the other participants. This reciprocal relationship prompts Margrethe (43 years old) to say: ‘Here [at camp] is someone who needs you. I can make a big difference, and I think that is great.’

The feeling of being needed, of contributing to the other participants’ victories and of making a difference both has an effect in terms of a personal and relational reward. Thus, helping others is described as valuable for the self, as Paul (60 years old) says: ‘when I give five cents, I feel I’m getting a million back’. Furthermore, the stronger relational bond between the helper and the person receiving help is described by Catherine (13 years old): ‘(…) we [Catherine and another participant] were not that close before that incident where we wanted to jump [from the stool into the swimming pool], and I thought “Okay, we have to help each other”.’

The statements from Paul and Catherine indicate that being a resource for other people not only can positively affect the individual’s self-feeling, it can also stimulate stronger relational bonds between the helper and the person who receives the help.

3.6 Being looked at >< Being seen ‘That deep deep understanding’

From the participants everyday-life perspective, another consequence of being the only person with a disability is the feeling of not being able to share common bodily lived experiences. Amanda (30 years old) describes this perspective as:

‘People in my everyday life are very considerate and respect when I say what it’s like and what I feel, but it is not that they know it themselves. Or “we have also tried…” or “we have seen others who also…” or something. There’s never really anyone who’s seen it, done it or tried it before in my everyday life, but at camp there is. You as leaders of the camp have seen it many times before. You have seen the patterns and experienced the reactions, but the other participants have tried something similar before, and that’s cool.’

While Amanda experiences the respect and sympathy of the people she is surrounded by in her everyday life, she still experiences a distance between herself and them, because they have neither professional nor lived knowledge of what it is like to live with CP. At camp this is different. Here she meets professionals who have specialist and practical knowledge of CP, and this creates an understanding between them. Nevertheless, she experiences the relation to her peers at camp as the most valuable relation, because of their shared lived experiences and deep understanding. These experiences are described by many of the participants as meaningful in relation to mainly three aspects. First, being able to have a dialogue about everyday circumstances with somebody who can reflect on matters in relation to their own lived experience is perceived as very beneficial. When the other participants have the same story and experience, such dialogues make them feel mutually understood and affiliated. In addition, these dialogues allow the participants to ask questions, get advice and share recommendations. Second, shared humour is mentioned as a thing that makes the atmosphere more joyful. This is a type of intra-group humour that hinges upon common struggles and misunderstandings that are turned into a shared inside joke, instead of a serious mistake or failure that should be pitied. Finally, the deep understanding between the participants leads them to accept and understand each other without the need for any explanation.

We noted that the participants who participate in sports associations for people with CP have experienced this symmetry in ability level and lived understanding before. An example is given by Christopher (10 years old): ‘Well I’ve tried it before. That’s how it is when I go to football. There we also struggle a bit more than others. (…) You feel like you understand each other and so on.’

3.7 Left alone ‘I miss them very much’

Camp by nature is a place of temporary residency. The participants’ time at camp is an intense and limited period, which is both an advantage and disadvantage of the camp concept. The advantage is connected to the intensity, which gives the participants the opportunity to develop strong social bonds and a number of great successes in only a few days. However, a person who has reached such a peak risks returning to a previous psychological state or social status. Many participants describe this as a ‘down trip’ that is a difficult and lonely contrast to the camp. Maria (30 years old) describes such an experience:

‘It’s that thing about coming home. It’s so crazy hard because you become so embraced [at camp] and you are loved just as you are. And then it’s just difficult to come home after such a great camp, and suddenly nobody is there. You just get hit right in the face by everyday life… I actually think that the hardest part is that there are no people who can see how wild it has been for me. And I happen to know that there are more people who feel like that.’

Maria and many of the other participants express that they experience a great contrast between camp life and everyday life, which can make it difficult to integrate the positive experiences from camp into their everyday lives.

4. Discussion

Our analysis showed that the camp comprised two social dimensions that were valued by the participants. One dimension was the sense of a unique community. The other was the sense of a reciprocal relationship between the participants.

We will discuss our findings in relation to the two social dimensions ‘the value of the unique community’ and ‘the value of the reciprocal relation’, and will elaborate on how knowledge of these dimensions can be beneficial when designing and implementing rehabilitation interventions and programmes.

4.1 The value of the unique community

The value of the unique community is described by the participants as a sense of belonging, security and synergy. This is a new social community that makes them behave, act and participate differently. This change in behaviour is a key effect of the camps, and it reveals a connection between the participants’ social community and the way they act. We believe this connection can be understood by looking at concepts described by Goffman (2009).

When referring to Goffman’s (2009) theoretical framework, the participants’ central experiences of a sense of security and relatedness make good sense. Thus, their experiences can be explained by the construct of an in-group of participants who relate to each other as fellow sufferers. According to Goffman (ibid.), this in-group group construct is the one to which the individual naturally belongs and finds comfort. This sense of belonging and comfort is not only seen in this study; it is also seen in many other camp studies (Aggerholm & Moltke Martiny 2017; Ashton-Shaeffer et al. 2001; Dawson & Liddicoat 2009; Devine & Dawson 2010; Goodwin et al. 2011; Goodwin & Samples 2005; McAvoy et al. 2006; Nyquist et al. 2019).

The safe experience of being at camp stands in contrast to everyday life. Several of the participants experience being stigmatised (Goffman 2009) outside of camp; they are met with prejudice that sometimes excludes and discriminates them and undermines their social status. This can lead to a negative self-image, in which the stigmatised person internalises an understanding of themselves as being an outsider (ibid.). In context of this study, this is a person with CP who cannot do what others can. In the safe space provided at the camp, this self-image may change, and this will be reflected in the participants’ actions. The development that the participants undergo at camp indicates that they do not act differently at camp because they become something more, better, or extraordinary. At camp, they simply just dare to become and show who they already are. They experience development and growth because they feel secure enough to dare to be vulnerable and let go of their avoidance behaviour. They become a brave version of themselves that makes them engage and take risks. This approach unfolds their potential and leads to successful actions, an enhanced self-perception and inner power they can bring back home. The same causality between social security and being brave enough to act despite fear of failure is also presented in Nyquist et al. (2019) and Goodwin et al. (2011).

This suggests that rehabilitation programmes should focus on establishing a peer community that stimulates a sense of social security so that participants dare to open up and place themselves in perceived risky situations. This focus on social environmental factors corresponds with several other studies that also highlight these elements as important for participation (Colver et al. 2012; Steinhardt et al. 2019). Thus, we propose paying more attention to the causality between social security and participation when designing intervention strategies for people with CP. This view on causality stems from what (at the sports camp) is perceived as the primary obstacle to participation. Many cases from the camp indicate that what mostly impedes the participants in their everyday lives is not a lack of motor functions that makes them unable to act, but that a lack of motor functions, self-confidence and comparable experiences makes them too insecure to act. Nevertheless, they find the courage to confront this insecurity when they have the appropriate social support and security.

If healthcare professionals and designers of interventions acknowledge that it is the lack of motor functions, self-confidence and comparable experiences that makes people with CP too insecure to act, then this could lead to a new approach to rehabilitation for people with CP. Therefore this knowledge has the potential to change the approach to rehabilitation: Instead of seeing people with a disability as being unable and functionally inadequate–and therefore as primarily in need of physical training–they should be seen as individuals who are good enough just as they are. However, they need a safe space where they can interact with peers, and where they can find the courage to experiment with new activities and thereby reinforce their positive self-image and belief in their own abilities.

4.2 The value of a reciprocal relation

The findings presented in the last three themes show how relationships can affect the way we perceive ourselves and how we act. The participants describe significant relationships that are different to the relationships in their everyday lives. This difference stimulates a new perception of themselves, their abilities and disability, which is interesting to discuss in relation to the theory of self-efficacy presented by Bandura (1997).

In relation to the social themes identified in our analysis, the self-efficacy factor ‘vicarious experiences’ is the most relevant. The power of vicarious experiences comes from the idea that ‘seeing people similar to oneself succeed by sustained effort raises observers’ beliefs that they too possess the capabilities [to] master comparable activities to succeed’ (Bandura 1994: 3). Unfortunately, in the everyday lives of the participants, this factor has either been absent or has stimulated the participants’ self-efficacy beliefs in an unfortunate way. In contrast, at camp many participants talk about how they find the courage and belief to act by observing how the other participants act. ‘If they can do it – so can I’ is a common phrase used by the participants, which indicates that they interpret the success of their peers as being transferable, which in turn enhances their self-efficacy beliefs.

This beneficial effect of observing peers was also one of the most prominent themes in the study by Standal and Jespersen (2008). Furthermore, this phenomenon is also seen in several other camp studies (Aggerholm & Moltke Martiny 2017; Ashton-Shaeffer et al. 2001; Goodwin et al. 2011; Goodwin & Samples 2005). In accordance with the findings in the present study, these studies also report how modelling oneself on the basis of observations of peers can stimulate an improvement in self-perception. Hence, observing equals can change our self-story. A change in self-story is for example seen in the theme ‘Burden >< Resource’. The new position as a person who can help others leads to some of the participants changing the character they occupy in the storyline. In these stories, they do not take the role of the ‘victim’ who needs help and support – as they often do in everyday life. Instead, they become the ‘hero’, who helps and makes a big difference.

Despite the possibility of a turnaround in the individual’s story, the analysis indicates that the stories and enhancement of self-efficacy might be challenged because the peer community is limited to the camp setting. Therefore, we must be aware that the many ‘I-can’ stories can become ‘I-only-can-here-when-I’m-together-with-you’ stories.

This indicates that we should increase focus on the transition from camp (or other segregated programmes) to everyday life. Furthermore, it could be valuable if we develop local rehabilitation programmes that allow participants to engage in teams of peers. Such teams should comprise participants of comparable ability levels and should allow the participants a sense of lived connection and understanding, thus allowing them to support each other and benefit from each other’s achievements and hereby develop and grow together.

Even though several of the findings of the present study to some degree echo the findings of previous studies, the present study presents a adds nuances and depth to our knowledge of the importance of providing people with CP with a community of peers. Moreover, we have argued for why rehabilitative programmes should include a focus on the social environment, rather than solely focussing on physical rehabilitation.

5. Conclusion

We have shown how young people and adults with CP experience being a part of a community of peers at a sports camp. Most participants describe this as being a very different social community compared with the communities they are used to in their everyday lives. At camp they felt they belonged instead of being an outsider. This sense of belonging gave them a feeling of social security and a feeling of empowering group energy and support, which made them dare to confront many of the challenges they were presented with at camp. Furthermore, the symmetry in perceived abilities, the feeling of making a difference and the internal lived understanding of being a person with CP were key factors that enhanced participants’ belief in themselves. Our findings indicate that the different dimensions of the peer community can stimulate a stronger self-efficacy and self-story, and thereby lead the participants to dare to become and show who they are – a brave version of themselves that makes them engage and take risks. This approach not only unfolds their potential and leads to successful actions, it also releases an inner power they can draw on when they return to their daily lives.

Our findings indicate that a focus on peer communities should be included in recommendations and interventions for people living with CP. Furthermore, our findings also indicate that the camp concept would benefit from a complementary continuous follow-up programme or intervention that could support the participants in their transfer to everyday life.

Notes

1This concept of functioning stems from the definition by WHO in the International Classification of Functioning, Disability and Health (ICF, 2001). 

Acknowledgements

First, we would like to thank all the participants who engaged in this study. Furthermore, we thank you the Elsass Foundation and Innovation Fund for financial support. Finally, we would also like to thank Jens Bo Nielsen and Kristian Moltke Martiny for feedback on the article.

Competing Interests

The authors have no competing interests to declare.

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