Camp experiences in the lives of adolescents with serious illnesses

Gillard, Ann; Allsop, Jared

doi:10.1016/j.childyouth.2016.04.001

Cited by 26 publications

(62 citation statements)

References 38 publications

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“…This feeling of being unconstrained can be facilitated by activities that distract CYP from the pain or boredom associated with long hospital stays (O'Callaghan, Dun, Baron, & Barry, ;Docherty et al, ) or help them overcome physical limitations associated with their LTC (Gillard & Watts, ). CYP with stigmatized diagnoses such as HIV (e.g., Gillard & Allsop, ) or altered appearances (e.g., Bluebond‐Langer et al, ; Tiemens et al, ) appear to particularly value this release from everyday worries or routine.…”

Section: Resultsmentioning

confidence: 99%

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Experiences of interventions aiming to improve the mental health and well‐being of children and young people with a long‐term physical condition: A systematic review and meta‐ethnography

Shaw

Moore

Nunns

et al. 2019

Child

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BackgroundChildren and young people with long‐term physical health conditions are at increased risk of experiencing mental health and well‐being difficulties. However, there is a lack of research that explores the experiences of and attitudes towards interventions aiming to improve their mental health and well‐being. This systematic review seeks to address this gap in the literature by exploring what children and young people with long‐term conditions, their caregivers, and health practitioners perceive to be important aspects of interventions aiming to improve their mental health and well‐being.MethodsAn information specialist searched five academic databases using predefined criteria for qualitative evaluations of interventions aiming to improve the mental health or well‐being of children with long‐term physical conditions. Reviewers also performed supplementary citation and grey literature searches. Two reviewers independently screened titles, abstracts, and full texts that met the inclusion criteria and conducted data extraction and quality assessment. Meta‐ethnography was used to synthesize the findings.ResultsScreening identified 60 relevant articles. We identified five overarching constructs through the synthesis: (a) Getting In and Staying In, (b) Therapeutic Foundation, (c) Social Support, (d) A Hopeful Alternative, and (e) Empowerment. The line of argument that links these constructs together indicates that when interventions can provide an environment that allows young people to share their experiences and build empathetic relationships, it can enable participants to access social support and increase feelings of hope and empowerment.ConclusionThese findings may provide a framework to inform the development of mental health interventions for this population and evaluate existing interventions that already include some of the components or processes identified by this research. Further research is needed to establish which of the constructs identified by the line of argument are most effective in improving the mental well‐being of young people living with long‐term conditions.

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Section: Resultsmentioning

confidence: 99%

“…CYP with stigmatized diagnoses such as HIV (e.g., Gillard & Allsop, 2016) or altered appearances (e.g., Bluebond-Langer et al, 1991;Tiemens et al, 2007) appear to particularly value this release from everyday worries or routine.…”

Section: A Therapeutic Foundationmentioning

confidence: 99%

Experiences of interventions aiming to improve the mental health and well‐being of children and young people with a long‐term physical condition: A systematic review and meta‐ethnography

Shaw

Moore

Nunns

et al. 2019

Child

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“…Concept maps showing the relationships between analytical ideas and themes across articles were then developed. 163 Brodeur; 164 Bultas et al; 165 Desai; 166 Gillard and Allsop; 167 Hosek et al; 168 Moola et al; 169 Stewart et al; 170 Barlow et al; 171 Fair et al; 172 Gillard and Watts; 173 Gillard et al; 174 Lewis et al; 175 Muskat et al; 176 Nicholas et al; 177 Stewart et al; 178 Tiemens et al; 179 White et al; 180 and Wright et al 181 Articles with more than two pages of interpretative data relating to experience of or attitude towards an intervention. Provision of a rich source of data to begin process of reciprocal translation These articles did not meet previous criteria.…”

Section: Reciprocal Translation Of Studiesmentioning

confidence: 99%

“…Twenty articles entered the synthesis at the first stage, all of which include a large number of interpretive findings. Of these, eight reported the views of CYP participants only, 162,163,[165][166][167][168][169]178 11 included a mix of participant perspectives 164,[171][172][173][174][175][176][177][178][179]181 and two included parent participants only. 165,180 The different participant perspectives were initially synthesised separately, but considered together on account of the overlap between findings across the articles.…”

Section: Study Selectionmentioning

confidence: 99%

Interventions to improve the mental health of children and young people with long-term physical conditions: linked evidence syntheses

Moore

Nunns

Shaw

et al. 2019

Health Technol Assess

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Background Although mental health difficulties can severely complicate the lives of children and young people (CYP) with long-term physical conditions (LTCs), there is a lack of evidence about the effectiveness of interventions to treat them. Objectives To evaluate the clinical effectiveness and cost-effectiveness of interventions aiming to improve the mental health of CYP with LTCs (review 1) and explore the factors that may enhance or limit their delivery (review 2). Data sources For review 1, 13 electronic databases were searched, including MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Science Citation Index. For review 2, MEDLINE, PsycINFO and CINAHL were searched. Supplementary searches, author contact and grey literature searches were also conducted. Review methods The first systematic review sought randomised controlled trials (RCTs) and economic evaluations of interventions to improve elevated symptoms of mental ill health in CYP with LTCs. Effect sizes for each outcome were calculated post intervention (Cohen’s d). When appropriate, random-effects meta-analyses produced pooled effect sizes (d). Review 2 located primary qualitative studies exploring experiences of CYP with LTCs, their families and/or practitioners, regarding interventions aiming to improve the mental health and well-being of CYP with LTCs. Synthesis followed the principles of metaethnography. An overarching synthesis integrated the findings from review 1 and review 2 using a deductive approach. End-user involvement, including topic experts and CYP with LTCs and their parents, was a feature throughout the project. Results Review 1 synthesised 25 RCTs evaluating 11 types of intervention, sampling 12 different LTCs. Tentative evidence from seven studies suggests that cognitive–behavioural therapy interventions could improve the mental health of CYP with certain LTCs. Intervention–LTC dyads were diverse, with few opportunities to meta-analyse. No economic evaluations were located. Review 2 synthesised 57 studies evaluating 21 types of intervention. Most studies were of individuals with cancer, a human immunodeficiency virus (HIV) infection or mixed LTCs. Interventions often aimed to improve broader mental health and well-being, rather than symptoms of mental health disorder. The metaethnography identified five main constructs, described in an explanatory line of argument model of the experience of interventions. Nine overarching synthesis categories emerged from the integrated evidence, raising implications for future research. Limitations Review 1 conclusions were limited by the lack of evidence about intervention effectiveness. No relevant economic evaluations were located. There were no UK studies included in review 1, limiting the applicability of findings. The mental health status of participants in review 2 was usually unknown, limiting comparability with review 1. The different evidence identified by the two systematic reviews challenged the overarching synthesis. Conclusions There is a relatively small amount of comparable evidence for the effectiveness of interventions for the mental health of CYP with LTCs. Qualitative evidence provided insight into the experiences that intervention deliverers and recipients valued. Future research should evaluate potentially effective intervention components in high-quality RCTs integrating process evaluations. End-user involvement enriched the project. Study registration This study is registered as PROSPERO CRD42011001716. Funding The National Institute for Health Research (NIHR) Health Technology Assessment programme and the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

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“…It is possible that a more intensive intervention is required to improve the interpersonal skills deficits in this population. Overall, young people with chronic conditions often benefit socially from attending a condition‐specific camp because they achieve an overall sense of belonging and ‘normalcy’ with peers who have the same condition . However, specific social skills strategies, such as those delivered in our intervention, may not be easily applied or generalized when delivered in a camp setting because it is very different from young people's day‐to‐day social experiences with their typically developing peers (e.g.…”

Section: Discussionmentioning

confidence: 99%

Camp‐based psychosocial intervention dosage and changes in independence in young people with spina bifida

Driscoll

Murray

Holbein

et al. 2019

Develop Med Child Neuro

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Aim To examine associations between camp‐based intervention dosage and changes in independence‐related skills for young people with spina bifida. Method Participants were 110 individuals (mean age [SD] 14y 7mo [6y 1mo], range 6–32y; 66 females, 54 males) who attended a summer camp for individuals with spina bifida between 2 to 6 times (mean 2.40; operationalized as ‘dosage’). Parents of young campers (e.g. those <18y) also participated in data collection. Campers and/or parents completed preintervention measures assessing campers’ level of medical responsibility, mastery over medical tasks, and social skills. Outcomes included change in preintervention scores from dose 1 to final dose. Results Hierarchical regression analyses with and without covariates (age, IQ, and lesion level at dose 1) revealed that increased dosage was significantly associated with greater parent‐reported improvements in campers’ medical responsibility and mastery over medical tasks. Increased dosage was also significantly associated with camper‐report of increased medical responsibility, but this relationship was no longer significant when including covariates. Intervention dosage was not associated with changes in campers’ social skills. Interpretation Repeated participation in a camp‐based intervention was associated with improvements in condition‐related independence. Future work may focus on the development of interventions to promote improvements in social skills for young people with spina bifida. What this paper adds Participating in an intervention over multiple summers is associated with increases in campers’ responsibility for spina bifida‐related tasks. Repeated summer camp intervention participation is associated with improved mastery over condition‐related tasks for campers with spina bifida. Repeated camp intervention participation is not associated with changes in social skills for campers with spina bifida.

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Camp experiences in the lives of adolescents with serious illnesses

Cited by 26 publications

References 38 publications

Experiences of interventions aiming to improve the mental health and well‐being of children and young people with a long‐term physical condition: A systematic review and meta‐ethnography

Experiences of interventions aiming to improve the mental health and well‐being of children and young people with a long‐term physical condition: A systematic review and meta‐ethnography

Interventions to improve the mental health of children and young people with long-term physical conditions: linked evidence syntheses

Camp‐based psychosocial intervention dosage and changes in independence in young people with spina bifida

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