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The impact of therapeutic recreation camps in the United Kingdom on the wellbeing of youth with serious illness and disability: A qualitative investigation

Open AccessPublished:October 26, 2022DOI:https://doi.org/10.1016/j.pedn.2022.10.002

      Abstract

      Purpose

      Therapeutic recreation (TR) summer camps can provide psychosocial benefits for children and young people (CYP) with chronic illness. At present however, there is a lack of recent research in the UK investigating the impacts of such camps. This study aimed to investigate experiences of a TR summer camp in the UK for CYP with chronic illnesses or disabilities. Specifically, it aimed to assess both children's and parents' perceptions of camp, to understand the impact on CYP's psychological wellbeing, social functioning and self-esteem; and the experiences of attending a camp specifically for CYP with health challenges.

      Design and methods

      Semi-structured interviews were conducted (N = 21; 11 parents, 10 children). Data were analysed thematically.

      Results

      Analysis produced themes in three broad domains: experiences of social marginalisation and emotional problems outside camp; experiences of camp; and impacts of camp. Impacts included improved self-confidence; gain in self-worth and positive self-identity; changing attitude towards their health condition; and development of social skills and independence. One of the most commonly reported themes was the value of friendships formed and maintained at camp. Parents and CYP reported predominantly positive experiences of camps, feelings of happiness, inclusivity and enablement, and a strong sense of empowerment in contrast to their usual feelings of being marginalised or different.

      Conclusions

      This study provides rich insights into the experiences and impact of TR camps for CYP with chronic illness.

      Practice implications

      Findings can help practitioners and commissioners make informed recommendations to families regarding the potential benefits of camp.

      Keywords

      Introduction

      Therapeutic recreation (TR) summer camps designed specifically for youth who have chronic illnesses have received increased attention as a potential context in which to improve youths' social, physical, and emotional wellbeing (
      • Bandino M.L.
      • Garfinkle R.A.
      • Zickefoose B.A.
      • Hsieh D.T.
      Epilepsy at a summer camp for children and young adults with developmental disabilities: A 3-year experience.
      ;
      • Epstein I.
      • Stinson J.
      • Stevens B.
      The effects of camp on health-related quality of life in children with chronic illnesses: A review of the literature.
      ;
      • Faith M.A.
      • Mayes S.
      • Pratt C.D.
      • Carter C.
      Improvements in Hope and beliefs about illness following a summer camp for youth with chronic illnesses.
      ). Such camps have been identified as a potential useful intervention for youth with chronic illnesses (
      • Plante W.A.
      • Lobato D.
      • Engel R.
      Review of group interventions for pediatric chronic conditions.
      ;
      • Woods K.
      • Mayes S.
      • Bartley E.
      • Fedele D.
      • Ryan J.
      An evaluation of psychosocial outcomes for children and adolescents attending a summer camp for youth with chronic illness.
      ) both in the United States and in other countries, including the United Kingdom (
      • Walker D.A.
      • Pearman D.
      Therapeutic recreation camps: An effective intervention for children and young people with chronic illness?.
      ). According to the American Therapeutic Recreation Association (ATRA), TR is a systematic process that utilizes recreation (leisure) and other activities as interventions to address the assessed needs of individuals with illnesses and/or disabling conditions, as a means to improve psychological and physical health, recovery and well-being (
      • American Therapeutic Recreation Association
      About Recreational Therapy.
      ).
      Research suggests that TR camps enable CYP to make new friends and engage in fun activities while being medically supported (
      • Gillard A.
      • Allsop J.
      Camp experiences in the lives of adolescents with serious illnesses.
      ). CYP with chronic illness might be at an increased risk for developing poorer social competence compared to healthy/normative groups due to limitations associated with their illnesses (
      • Janin M.M.H.
      • Ellis S.J.
      • Lum A.
      • Wakefield C.E.
      • Fardell J.E.
      Parents’ perspectives on their child’s social experience in the context of childhood chronic illness: A qualitative study.
      ;
      • La Greca A.M.
      Social consequences of pediatric conditions: Fertile area for future investigation and intervention?.
      ;
      • Lambert V.
      • Keogh D.
      Striving to live a normal life: A review of children and young people’s experience of feeling different when living with a long term condition.
      ;
      • Martinez W.
      • Carter J.S.
      • Legato L.J.
      Social competence in children with chronic illness: A meta-analytic review.
      ). Although limited and mostly conducted in North America, studies examining the impacts of such camps have highlighted numerous benefits for CYP with chronic illnesses or disabilities (
      • McCarthy A.
      Summer camp for children and adolescents with chronic conditions.
      ;
      • Woods K.
      • Mayes S.
      • Bartley E.
      • Fedele D.
      • Ryan J.
      An evaluation of psychosocial outcomes for children and adolescents attending a summer camp for youth with chronic illness.
      ). This includes improving campers' self-esteem and perceptions of social acceptance (
      • Gillard A.
      • Allsop J.
      Camp experiences in the lives of adolescents with serious illnesses.
      ;
      • Kiernan G.
      • Guerin S.
      • MacLachlan M.
      Children’s voices: Qualitative data from the “Barretstown studies”.
      ;
      • Moola F.J.
      • Faulkner G.E.J.
      • White L.
      • Kirsh J.A.
      The psychological and social impact of camp for children with chronic illnesses: A systematic review update.
      ;
      • Tominey S.L.
      • Pietrzak R.
      • Southwick S.
      • Mayes L.C.
      More than just SeriousFun: The impact of camp on resilience for campers with serious illness 2014–2015 Report.
      ); developing social skills and relationships (
      • Allsop J.
      • Negley S.
      • Sibthorp J.
      Assessing the social effect of a therapeutic recreation summer camp for adolescents with chronic illness.
      ;
      • Desai P.P.
      • Sutton L.J.
      • Staley M.D.
      • Hannon D.W.
      A qualitative study exploring the psychosocial value of weekend camping experiences for children and adolescents with complex heart defects.
      ); improving independence and self-reliance; gaining new understandings of their physical potential (
      • Goodwin D.L.
      • Staples K.
      The meaning of summer camp experiences to youths with disabilities.
      ); and developing a better knowledge about, and attitudes towards their illness (
      • Briery B.G.
      • Rabian B.
      Psychosocial changes associated with participation in a pediatric summer camp.
      ;
      • McCarthy A.
      Summer camp for children and adolescents with chronic conditions.
      ;
      • Walker D.A.
      • Pearman D.
      Therapeutic recreation camps: An effective intervention for children and young people with chronic illness?.
      ).
      Despite these positive findings, existing research has methodological limitations (
      • Moola F.J.
      • Faulkner G.E.J.
      • White L.
      • Kirsh J.A.
      The psychological and social impact of camp for children with chronic illnesses: A systematic review update.
      ). Most studies evaluating outcomes for CYP with chronic illnesses have focused on camps designed for specific illness populations (
      • Walker D.A.
      • Pearman D.
      Therapeutic recreation camps: An effective intervention for children and young people with chronic illness?.
      ), and there are fewer studies of camps for children with a variety of chronic illnesses. Given the large number of resources required for such camps, non-specific illness camps could potentially provide an economical approach to addressing psychosocial needs in a variety of illness populations (
      • Faith M.A.
      • Mayes S.
      • Pratt C.D.
      • Carter C.
      Improvements in Hope and beliefs about illness following a summer camp for youth with chronic illnesses.
      ), and further research is needed to evaluate these (
      • Epstein I.
      • Stinson J.
      • Stevens B.
      The effects of camp on health-related quality of life in children with chronic illnesses: A review of the literature.
      ;
      • Hunter H.L.
      • Rosnov D.L.
      • Koontz D.
      • Roberts M.C.
      );
      • Plante W.A.
      • Lobato D.
      • Engel R.
      Review of group interventions for pediatric chronic conditions.
      ;
      • Woods K.
      • Mayes S.
      • Bartley E.
      • Fedele D.
      • Ryan J.
      An evaluation of psychosocial outcomes for children and adolescents attending a summer camp for youth with chronic illness.
      ). Many previous studies have used quantitative approaches, and campers' experiences may not be well-understood (
      • Gillard A.
      • Allsop J.
      Camp experiences in the lives of adolescents with serious illnesses.
      ;
      • Moola F.J.
      • Faulkner G.E.J.
      • White L.
      • Kirsh J.A.
      The psychological and social impact of camp for children with chronic illnesses: A systematic review update.
      ). Using a qualitative approach can enable a more in-depth understanding of campers' experiences and how they and their families evaluate the impacts of camp attendance (
      • Knapp D.
      • Devine M.A.
      • Dawson S.
      • Piatt J.
      ). An in-depth qualitative approach may help identify aspects of camp that are enjoyable, beneficial or unhelpful, to elucidate key programme elements and inform planning and development (
      • Martiniuk A.
      • Silva M.
      • Amylon M.
      • Barr R.
      ). A related study exploring the preliminary quantitative outcomes of such a camp in the United Kingdom demonstrated empirical support, with small-medium effect sizes for emotional and social functioning quality of life domains respectively (
      • Yang J.
      • Shafran R.
      • Bennett S.
      • Jolly A.
      An investigation into the psychosocial impact of therapeutic recreation summer camp for youth with serious illness and disability.
      ). The present paper presents a preliminary qualitative analysis of the same camp.
      The overall goal of this study was to gain an understanding of the experiences and impacts of TR summer camps for CYP (age 8–17) with chronic illnesses. Specifically, it aimed to assess both children's and parents' perspectives on:
      • 1.
        The impact of camp on CYP's psychological wellbeing, social functioning and self-esteem;
      • 2.
        The experiences of attending a camp specifically for CYP with health challenges, including both positive and negative experiences of camp.

      Methods

      Setting

      The camps, called the Health Challenges (HC) Camps, are five-day residential activity camps for CYP aged 8–17 who are experiencing or have recently experienced serious health conditions (e.g. cancers, HIV/AIDS). They are free to participants and provided in three locations across the UK: Scotland, Midlands and South, by the ‘Over The Wall’ charity that is a member of the SeriousFun Children's Network (), a worldwide association of camps for seriously ill children. Traditional camp activities are adapted so that those with physical and medical limitations can participate in a safe and supportive environment. The camps aim to: improve psychosocial wellbeing (by being nurturing and supportive, and making activities challenging but accessible and fun); develop coping strategies, resilience and independence (by encouraging participation in new and challenging experiences); and increase connectivity and friendship (by introducing children and families to new networks of peer support). Over The Wall (OTW) has developed an operational model of TR ©OTW 2019 (see Fig. 1). Building upon a model of TR developed by Barretstown (another SeriousFun Camp;
      • Kearney P.J.
      The Barretstown experience: A rite of passage.
      ), sourced from a number of disciplines including Occupational Therapy, Psychology and Recreational Therapy, OTW has refined the model of TR used for its camps (Fig. 1). TR programme aims to help campers realise their abilities and talents through four steps: challenge (by choice), success, reflection, and discovery (that they can achieve more).
      Fig. 1
      Fig. 1Over The Wall's model of Therapeutic Recreation ©OTW 2019. Building upon a model of TR developed by Barretstown (another SeriousFun Camp; Kearney, 2009), sourced from a number of disciplines including Occupational Therapy, Psychology and Recreational Therapy, Over The Wall has refined the model of TR used for its camps.
      Campers are individually assessed (physically, psychologically and socially) and allocated to small groups (around 8 campers) according to age, gender, and individual assessment of needs/conditions. Volunteers are with campers throughout the duration of camp, to provide support feedback, positive reinforcement, and role modelling. There is a staff ratio of approximately one adult to one camper.

      Participants

      Ethical approval was granted by the UCL Research Ethics Committee. The sample consisted of children who took part in a HC Camp in 2018 (aged 8–17) and their parents. In order to conduct face-to-face interviews where possible, campers residing in the South East and Midlands regions of the UK who were within 2-h from London were prioritized. Participants were required to understand and speak adequate levels of English and be able to give informed consent or assent (for those under 18 years of age).

      Measures

      Parent and child topic guides were created for semi-structured interviews, based on previous research findings (
      • Briery B.G.
      • Rabian B.
      Psychosocial changes associated with participation in a pediatric summer camp.
      ;
      • Gillard A.
      • Allsop J.
      Camp experiences in the lives of adolescents with serious illnesses.
      ;
      • Goodwin D.L.
      • Staples K.
      The meaning of summer camp experiences to youths with disabilities.
      ).
      Child topic guides and interviewing style were adapted for children of different ages. Topic guides were piloted on a parent and child pair, and slightly revised subsequently (data collected from these participants was analysed as part of the main sample). The final topic guides explored: reasons for applying and attending; overall experiences of camp; what they enjoyed and disliked and why; challenges; perceived impacts on wellbeing, mood, self-esteem and social skills; and opinions on attending a camp specifically for individuals with health challenges. Additional probes were used to elicit more information as appropriate. Demographic information was collected via a self-report questionnaire.

      Procedures

      Participants were recruited via email by the first author (JY). No participants had previously met or interacted with JY who collected the data. Interviews were conducted in participants' homes where possible, unless otherwise requested by participants. Interviews were conducted 7–9 months after attending camp and parents and children were interviewed separately where possible. All interviews were audio-recorded and transcribed verbatim.

      Data analysis

      Data were analysed using thematic analysis based on the principles of
      • Braun V.
      • Clarke V.
      Using thematic analysis in psychology.
      within NVivo software. Parent and CYP data were analysed together, with both similarities and variations between these sub-groups explored throughout. Our analysis combined deductive and inductive approaches in order to both obtain answers to our initial research questions about experiences and perceived impacts of camp, and to explore issues and concepts raised by participants.
      Analysis was conducted primarily by JY. Initial coding and analytic ideas based on six interviews were discussed with NM (a qualitative methodologist), considering discrepant cases, alternative perspectives and refinements to codes and themes. An external researcher reviewed and discussed revisions of codes and themes in two selected transcripts during early analysis. In the later analytic stages, JY and NM checked for clear linkages between themes and sub-themes. Our final hierarchical thematic framework, in which higher-order themes represented over-arching or more general topics, and sub-themes reflected reasons for or sub-components of these informed the structure and contents of our results, which are presented alongside participant interview extracts to illustrate how these were expressed by participants themselves. To improve the credibility and trustworthiness of the analysis, throughout the study JY tried to maintain a reflexive stance, and examined how her preconceptions and positioning (an MSc student with an interest in CYP's mental health) might impact on the research process, in particular during data collection and analysis.

      Results

      Recruitment

      Email invitations were sent to 58 parents. Twenty-nine participants (15 parents and 14 children) responded and expressed interest (26% response rate). Four parents did not respond to further emails, so semi-structured interviews were conducted with 21 participants (11 parents and 10 children), all of whom were parent-child pairs from the same families except for one where only the parent was interviewed. Thus, 6% of the 191 campers who attended the South or Midlands HC Camp in 2018 were interviewed. The majority of interviews were conducted in participants' homes, except for 2 parent and child interviews conducted in community settings, and 2 parent and child interviews conducted over the telephone. Thirteen out of 21 interviews were conducted individually. Interviews with children were on average 20 min (SD = 11), and 33 min (SD = 17) for those with parents.

      Participant characteristics

      Participant characteristics are summarised in Table 1. A diverse range of health conditions was represented, including cancer, immunologic, gastrointestinal, rheumatologic, kidney and endocrine disorders. This was comparable to the overall population of HC camp attendees in 2018, which predominantly consisted of children with cancer (22%), neurological (11%), immunological (9%), gastrointestinal (8%), rheumatologic (7%), kidney (5%) and endocrine (5%) disorders.
      Table 1Summary of Participant Characteristics.
      CharacteristicChildren (N = 10)

      N / Mean (SD)
      Parents (N = 11)

      N / Mean (SD)
      Gender
       Female6 (4 Male)11 (0 Male)
      Age (years)13 (SD = 2)45 (SD = 4)
      Age range (years)10–1838–53
      Ethnic group
       White British67
       Asian22
       Black African11
       Mixed White and Asian11
      Family structure (of child)
       Has one or more sibling8
       Both parents and child living together8
      Parents separated, child living with mother3
      Child's Health condition
       Gastrointestinal Disorders3
       Cancer2
       Rheumatologic Disorders1
       Endocrine disorders (Type 1 Diabetes)1
       Immunologic Disorders1
       Kidney Disease1
       Other disorders2
      HC Camp attended in 2018
       South HC Camp6
       Midlands HC Camp5
      HC Camper status
       First-time campers (have not attended a HC camp prior to 2018)5

      Overview of findings

      Themes were organized into three broad areas (summarised in Table 2). The first of these provide some context for participants' camp experiences and views, which include experiences of social marginalisation and emotional struggles before attending camp. Campers' experiences at camp are explored in section 2, reflecting themes of an atmosphere of positivity, shared experiences and inclusivity, feeling enabled, and specific negative experiences. The final section investigates perceived impacts of camp attendance, which include themes of gaining self-confidence and a sense of empowerment, increased acceptance of their health condition, and skills development. Themes from children and their parents were generally congruent, and differences in these perspectives are reported below where they were found.
      Table 2Overview of the themes from the final hierarchical thematic framework.
      Experiences before camp: social marginalisation and emotional struggles

      Challenges faced, such as difficulties forming and maintain friendships at school; exclusion from mainstream activities; poor mental health, low mood or anger issues.

      Nervousness or worry; excitement before attending camp.
      Experiences of camp: positivity, shared experiences and empowerment

      An atmosphere of positivity

      Social aspects: Shared experiences and inclusivity:

      Opportunity to meet others with health challenges; Inclusivity and togetherness.

      Enabling:

      Freedom to do activities at own pace; Can-do attitude; Supportiveness and encouragement.

      Specific negative experiences of camps:

      Specific difficulties experienced at camp or dislikes; Suggested improvements for camp.
      Impacts of camp

      Self-confidence and empowerment:

      Gaining self-confidence generally and specifically; Empowerment: self-worth and positive self-identity; Gaining a new perspective or positive outlook.

      Increased acceptance of health conditions:

      Open acceptance of their health condition and comfortable being themselves.

      Skills development:

      Social skills and forming new friendships; Independence and illness management; Activities.

      Experiences before camp: social marginalisation and emotional struggles

      Nine parents and 2 children described challenges prior to attending camp, particularly at school. These included being seen or treated differently from peers, difficulties forming or maintaining friendships (e.g. due to time spent in hospital), and feelings of isolation or loneliness. Some participants also described being unable to take part in mainstream activities due to their/their child's health conditions, and/or never or rarely spending nights apart from their parents. Five parents said their child had experienced emotional problems before camp, including poor mental health, low mood, or anger issues.
      [On school trips] I just was sort of secluded in myself, I wouldn't talk to anyone, I wouldn't socialise or anything…because I was scared of being judged (C3, female, aged 18)
      The majority of participants (16) described feeling nervous or worried before their/their child's first time attending camp, in particular as for many it was their/their child's first time being away from their parents/home. Children also reported worries about not knowing anyone, having to make friends, and their medical care. Parents also described concerns about their child's medical care and ability to cope in a new environment. Some CYP also described feeling excited.

      Experiences of camp: positivity, shared experiences and empowerment

      All participants described a very positive experience of camp overall, which was closely linked to feeling happier and more positive. Some CYP described their experience of camp as “amazing”, “brilliant”, or the “best week of my life”. Specific less positive experiences were also reported (discussed below). The following sections describe the key aspects of camp that respondents linked to their overall positive experiences, namely the atmosphere of positivity, social aspects of shared experiences and inclusivity, and feeling enabled. Some described specific aspects that were enjoyed the most, such as activities (e.g. climbing, ziplining, fishing) and/or the opportunity to make new friends and meet others with health challenges. For many, the atmosphere of positivity, and volunteers' and campers' kindness contributed to the camper feeling happy. Happiness was also linked to a sense of empowerment and gaining self-confidence. For example:
      Immediately afterwards was just a sense of ‘woah’. Empowerment and happiness, extreme happiness. (P7, parent of male aged 11)

      An atmosphere of positivity

      A positive, mood-enhancing camp atmosphere was described by more than half of participants (11). Some attributed this to the volunteers, who were described as being friendly, understanding and/or welcoming:
      they [volunteers] were kind…We were only there for five minutes around the positivity and the happiness… But not fake - totally, totally real. So to put a child in an environment like that, who feels different and low and possibly managing pain and negative thoughts for five days is truly inspiring for that kid… His life doesn't have to be negative and miserable. There is actually another way. (P4, parent of male aged 13)

      Social aspects: shared experiences and inclusivity

      The opportunity to meet others with health challenges was described as an important and valued experience by all the participants. Participants described how this engendered a sense of commonality and ease that promoted feelings of belonging and reduced feelings of isolation. CYP felt they were able to understand each other without (fear of) judgement, and described becoming more accepting of others. One child said, “you don't feel different because you know they [others] have things too and you're all kind of dealing with it together” (C7, male, aged 11). Similarly, one parent said:
      I think just the awareness side of things…not having to explain why you're tired or why you can't do that today or why you have to take so many tablets. Because I think at school she has to explain herself quite a lot. …but [at camp] everybody's an equal…they're all seen as children. (P1, parent of female aged 15)
      Taking part in activities with others with health challenges also promoted feelings of inclusivity and togetherness for around half of the participants. Both parents and children described the importance of shared experiences of fitting-in and a sense of camaraderie. One child described camp as:
      It's a place that people understand me. People are like me, a lot of people have disabilities, and we all have different talents…it just feels for me a place to fit-in better….It's made me way more confident about myself… there were all sorts of characteristics at the camp. And that just made me feel accepted. (C11, male, aged 12)

      Enabling

      Three key features of camp experiences were identified as contributing to children feeling enabled, all of which produced a sense of empowerment and gains in self-confidence (see section 3). These were having the freedom to do things at their own pace, gaining a ‘can-do’ attitude, and experiencing support and encouragement. These elements were talked about more by parents than children.
      Freedom to do activities at own pace. Half of respondents (7 parents) described how being able to take part in activities at one's own pace was beneficial as it reduced pressures or restrictions children often experienced in mainstream settings, so promoting a sense of empowerment and confidence.
      at the camp…there was no pressure for her to do it, it was everything in their own time… she did when she was ready to do it, so when she did do it, it was a massive self-achievement…if she needs to take a break at any time she can do. (P1, parent of female aged 15)
      Can-do attitude. Respondents described experiencing and gaining a strong can-do attitude, as well as accepting that it was okay to need to do things differently to others. Seeing others do activities, participate in talent shows, and/or have fun without letting their health challenges restrict them promoted this attitude, and was also empowering and inspiring for some.
      I can do things like everyone else….I might do them differently or I might struggle a bit more, but I can…[At camp there] were activities I thought I'd never be able to do again. And they show you that anyone can do everything…Even people who are in wheelchairs can go up the climbing wall or things like that… I just felt like I could do anything because they made everything so accessible. (C3, female, aged 18)
      One parent also commented that conversations with camp staff about what they could achieve contributed to this ‘can-do’ attitude:
      I think ultimately, the experience of - he wasn't a sick kid at camp, he was a regular kid. There was nothing he couldn't do. There was no ‘you can't’… It was, ‘yes, you can’. That was massive. (P4, parent of male child aged 13)
      The support and encouragement campers received from staff and campers were also described as enabling in encouraging campers to achieve more during activities, e.g. climbing higher.
      Just take rock climbing, you do it basically the same but this time there were more people encouraging you, it's not like you're forced to do anything, you're encouraged, just not pushed (C5, female aged 14)

      Specific negative experiences of camps

      All respondents described experiences of camps in overall positive terms, with 7 saying they had no negative experiences or criticisms of camps. Fourteen respondents (8 parents) did report some negative experiences or criticisms and related suggestions for improvements. Criticisms related to specific features of camp and included: dislike of the early wake up times or being woken up to get their blood tested; issues with their roommate or that they did not get along; a camp ending early due to an outbreak of illness; down time where campers were asked to rest; not being allowed to use their phones; and the food.

      Impacts of camp

      The impacts that attending camp had on participants consisted of three key themes presented below. These include gaining self-confidence and a sense of empowerment, increased acceptance of their health condition, and skills development.

      Self-confidence and empowerment

      Gaining self-confidence. The majority of participants described gaining a general sense of self-confidence as a result of attending camp. Those who identified specific aspects reported greater confidence to socialise and make friends, take part in activities, try new things, and in how they perceive their health challenges. For example, a girl aged 13 described feeling more confident to talk others “because I had to make new friends [at camp]”, and in general because she now understood her condition as “a part of me, so for me to be able to embrace that part of me makes me feel more confident with myself”. Her mother also described seeing this shift:
      When I collected her six days later - totally different child […]she was just beaming with such confidence and such happiness…with self-assurance and excitement…She's just glowing…and she's just so light (P2, parent of female aged 13)
      For a few, confidence and willingness to try new things involved overcoming fears, which carried forward after camp. For example a parent described how her daughter (aged 11) overcame her fear of heights. She attributed this to “seeing the other children all do it and knowing that everyone there has different health challenges…‘if they can go up the wall, surely, I can go up the wall’”.
      Empowerment: self-worth and positive self-identity. Eight respondents (5 parents) described camp as empowering, with children gaining self-worth and developing a more positive self-image. Several parents described their children gaining a new positive outlook, or finding a goal or aspiration they wanted to strive towards. Common views were that children learnt it was okay to be different, to accept and be comfortable with themselves, or to believe in their abilities after successful achievements (e.g. making friends or doing activities) that they previously struggled with or had been unable to do. For example:
      I think the benefits for him were positive self-image, be happy with who you are…Your illness doesn't validate you […] The thing about depression is it doesn't get better overnight, but it was a gradual improvement about his self-perception and what he could achieve. (P4, parent of male aged 13)

      Increased acceptance of health conditions

      After meeting others with health challenges at camps, around half of both parent and children said they/their child felt more positive about, or had become more openly accepting of their health condition. A few said camp had increased their confidence to tell others about their health condition. Two parents also reported that after meeting others with similar medical needs (e.g. a feeding tube), their child felt more comfortable with themselves and accepting of their own needs, whereas before camp they were ashamed of these. Some linked this to feeling more confident or empowered to manage their health needs in public without fear of judgement. For example:
      [During PE] I'm more confident now to sit in the corner and try and do my physio exercises. If people would ask me, I'd just say ‘oh I'm stretching to help my joints’…. So, I think that [camp] has helped my confidence (C2, female, aged 13)
      I think the main thing is they send back the children in a happy positive way. Comfortable with themselves, they accept themselves as they are (P10, parent of male aged 10)

      Skills development

      Building social skills was an important perceived impact of camps expressed by all but two participants. Both parents and children described valued friendships formed at camp, and often maintained since then. Some thought this had made it easier for campers to form friendships at school, and/or made them more friendly and willing to socialise. This was particularly important for some CYP who had previously struggled to make friends. This was usually attributed to the atmosphere of positivity and sense of belonging at camp.
      The group of friends she's made [at camp], it's the first time she's ever kept in touch with children a year later… So that's a skill she has learned is keeping in touch with people that aren't local. (P9, parent of female aged 11).
      Eleven participants (8 parents) described learning more independence, for many because it was the first time the child had been away from home or their parents overnight. For some, this was associated with learning to manage their illness on their own (e.g. a camp doctor teaching them to use an EpiPen or PEG feed). Seven participants also highlighted learning to do new activities.

      Discussion

      This study explored the experiences and impacts of TR summer camp programmes for youth with chronic illness in the UK by examining the perspectives of both children and their parents using semi-structured interviews. The research focused on the camp's impact on CYP's psychological wellbeing, social functioning, and self-esteem; and the experiences of attending a camp specifically for CYP with health challenges, including both positive and negative experiences of camp. The themes described by children and their parents were generally congruent, which suggests that parents recognise the impact that attending camp has on their children and share similar opinions on the value of camp experiences.
      Regarding outcomes, parents described improvement in self-confidence, their children's enjoyment in being able to do activities that they were unable to do in their lives previously, and developing more positive and accepting attitudes towards their health condition. They also reported improvements in social skills, independence, and self-reliance/management of their health condition. Participants reported overall positive experiences of camps, feelings of happiness, inclusivity and enablement, and a strong sense of empowerment in contrast to their usual feelings of being marginalised or different. Findings suggest that camps provide valued opportunities to meet others with health challenges, and that shared experiences contributed to attendees feeling included and less isolated. One of the most commonly reported themes was the value of friendships formed and maintained at camp. These link to
      • Wallander J.L.
      • Varni J.W.
      Effects of pediatric chronic physical disorders on child and family adjustment.
      model which conveyed the importance of peer relationships and social support for CYP with chronic illnesses', as this could serve as a resistance factor for adjustment. Social support could buffer the impact of stressors, such as adjusting to a chronic illness or coping with a difficult medical treatment (
      • La Greca A.M.
      • Auslander W.F.
      • Greco P.
      • Spetter D.
      • Fisher Jr., E.B.
      • Santiago J.V.
      I get by with a little help from my family and friends: Adolescents’ support for diabetes care.
      ;
      • Varni J.W.
      • Babani L.
      • Wallander J.L.
      • Roe T.F.
      • Frasier S.D.
      Social support and self-esteem effects on psychological adjustment in children and adolescents with insulin-dependent diabetes mellitus.
      ); and serve as a protective factor against social isolation (
      • La Greca A.M.
      Peer influences in pediatric chronic illness: An update.
      ).
      These positive experiences are important to the wellbeing of CYP living with chronic illnesses, especially given some participants' reported challenges faced prior to attending camp, for example difficulties forming and maintaining friendships at school, exclusion from mainstream activities. and emotional struggles. Findings from this UK-based study therefore mirror those of previous research in other contexts suggesting that TR camps can have beneficial impacts for CYP with chronic illnesses in the UK context (
      • Briery B.G.
      • Rabian B.
      Psychosocial changes associated with participation in a pediatric summer camp.
      ;
      • Desai P.P.
      • Sutton L.J.
      • Staley M.D.
      • Hannon D.W.
      A qualitative study exploring the psychosocial value of weekend camping experiences for children and adolescents with complex heart defects.
      ;
      • Gillard A.
      • Allsop J.
      Camp experiences in the lives of adolescents with serious illnesses.
      ;
      • Goodwin D.L.
      • Staples K.
      The meaning of summer camp experiences to youths with disabilities.
      ;
      • Kiernan G.
      • Guerin S.
      • MacLachlan M.
      Children’s voices: Qualitative data from the “Barretstown studies”.
      ;
      • McCarthy A.
      Summer camp for children and adolescents with chronic conditions.
      ;
      • Moola F.J.
      • Faulkner G.E.J.
      • White L.
      • Kirsh J.A.
      The psychological and social impact of camp for children with chronic illnesses: A systematic review update.
      ;
      • Tominey S.L.
      • Pietrzak R.
      • Southwick S.
      • Mayes L.C.
      More than just SeriousFun: The impact of camp on resilience for campers with serious illness 2014–2015 Report.
      ;
      • Walker D.A.
      • Pearman D.
      Therapeutic recreation camps: An effective intervention for children and young people with chronic illness?.
      ).
      The reported themes overlap with many of the overarching goals and core outcomes of OTW, including reducing campers' isolation by introducing them to new networks of peer support, increasing their confidence and independence, and being supportive and making activities challenging but accessible. In line with OTW's operational model of TR ©OTW 2019 (Fig. 1), campers reported experiencing a fun and supportive environment, enjoyment, learning new skills through activities and by challenging themselves, improved self-confidence and independence. Some participants in the current study also attributed the atmosphere of positivity at camp to the staff.

      Limitations

      There may have been a positive response bias in this study as only 26% of invitees were interviewed. Our respondents may have had more positive experiences of camp than others who did not take part in the study. Nevertheless, findings from this group suggest the potential benefits that TR can confer for children with serious illnesses or disabilities. A diverse range of participants were purposively recruited, and the data obtained reflected a range of perspectives, including various health conditions, medical needs and prior experiences of camp. Although most participants were able to recall their experiences in great detail, a few expressed difficulties remembering specific details of camp and recall bias may be a limitation given that interviews were conducted 7–9 months after attending camp, and the longer-term impacts of camp (beyond 7–9 months) have not been examined. However, not conducting interviews immediately after camp may have benefits as the gap allowed the exploration of both the short-term and longer-term subjective impact of camp.

      Conclusion

      To conclude, findings from this qualitative study provide rich insights into CYP's experiences of TR camps for those with chronic illnesses, specifically regarding outcomes and experiences in a UK context. TR programmes have the potential to facilitate numerous psychosocial benefits through the included activities; encouragement, support and sense of inclusivity; their positive atmosphere; and experiences of feeling enabled that can promote a sense of empowerment and confidence. Camps can provide positive and valuable experiences for CYP, and as one child described, “I just felt like I could do anything”.

      CRediT authorship contribution statement

      Jacquelyn Yang: Conceptualization, Methodology, Formal analysis, Investigation, Methodology, Writing – original draft, Writing – review & editing, Visualization, Project administration. Roz Shafran: Conceptualization, Methodology, Formal analysis, Resources, Writing – review & editing, Supervision, Project administration. Sophie Bennett: Conceptualization, Methodology, Formal analysis, Resources, Writing – review & editing, Supervision, Project administration. Allan Jolly: Conceptualization, Methodology, Resources, Writing – review & editing. Nicola Morant: Conceptualization, Methodology, Formal analysis, Resources, Writing – review & editing, Supervision, Project administration.

      Declaration of Competing Interest

      This work was supported by the Division of Psychiatry and Institute of Child Health at University College London , UK; and the interviewers' travel expenses were funded by Over The Wall, UK.
      One of the authors (Allan Jolly) is a senior staff member at the camp organisation that was investigated in this research. Throughout the research process, meetings were held between AJ and other members of the research team to incorporate stakeholder involvement and provide practical and intellectual input.
      JY, RS, SB & NM report no Conflicts of Interest.

      Acknowledgments

      This work is supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

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