Improvements in Psychosocial Outcomes Following a Summer Camp for Youth with Bleeding Disorders and Their Siblings

Faith, Melissa A.; Boone, David A.; Kalin, Jacob; Healy, Ashly; Rawlins, Jonathan; Mayes, Sunnye

doi:10.1016/j.pedn.2021.05.001

Cited by 4 publications

(3 citation statements)

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“…Organized events, such as camps for CYP with cSLE, were beneficial in providing social support through shared experiences and helping young people to normalize their life [ 81 , 82 ]. Camps for CYP offer opportunities for peer acceptance and social inclusion, and these benefits have been similarly described in studies in other long-term conditions such as diabetes [ 83 ], celiac disease [ 84 ], bleeding disorders [ 85 ], and epilepsy [ 86 ]. It is reported in the literature that CYP with cSLE has shown high coping scores for emotion-focused coping strategies (0.6 ± 0.2) and socially supported coping strategies (0.5 ± 0.2) linked to high happiness scores on the Brief Coping Orientation to Problems Experienced (COPE) questionnaire and the Subjective Happiness Scale (SHS) [ 87 ].…”

Section: Discussionmentioning

confidence: 99%

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

et al. 2023

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Childhood-onset systemic lupus erythematosus (cSLE) impacts the daily life of children and young people. This study aimed to describe the experiences and perspectives of children and young people living with cSLE. An integrative review guided by Whittemore and Knafl was conducted. Extant empirical research published in peer-reviewed journals from 2000 to 2021 on children’s self-reported experiences living with cSLE was identified from Scopus, CINAHL, Medline via PubMed, and PsycINFO via Ovid databases. Nineteen studies involving over 1400 participants were included. Four themes and fourteen sub-themes were identified: (1) challenging symptoms (disruptions to life and altered self, severity, fatigue, depression, and anxiety), (2) medicines and side effects (dreaded steroids, conflicting feelings, and medication adherence), (3) complicated life (school sports and social, giving things up, lack of understanding, and quality of life) and (4) ways of coping (family and friends, relationships with health providers, and maintaining positivity). While cSLE shares many similarities with adult-onset SLE, awareness of differences in experiences and perceptions of children and young people is crucial. The significant psychological and social impact of the disease and its treatments necessitates a comprehensive, holistic approach to managing cSLE that considers the unique needs of youth.

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Section: Discussionmentioning

confidence: 99%

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

et al. 2023

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“…In addition to HTC-based social supports, local chapters of national hemophilia organizations, such as the National Hemophilia Foundation or Hemophilia Federation of America, sponsor social events for families, including condition-specific summer camps for children and adolescents with hemophilia. Faith et al (2021) demonstrated that a hemophilia-focused 5-day summer camp improved 6- to 19-year-old patients’ knowledge and attitudes about their condition, including the perception of their condition as a benefit rather than a burden. As expected, qualitative and quantitative data indicate such social support is positively correlated with adherence behaviors in adolescents with hemophilia (van Os et al, 2017, 2018).…”

Section: Interventions To Support Adherence In Pediatric Hemophiliamentioning

confidence: 98%

Supporting the development of adherence and self-management in pediatric severe hemophilia.

Cartwright¹

2022

Clinical Practice in Pediatric Psychology

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Hemophilia is a complex medical condition in which home-based selfmanagement by children, adolescents, and their families is the standard of care. However, research on hemophilia self-management is limited. Because of its complexity and self-management standard, understanding the development of adherence and selfmanagement in hemophilia may provide insights into supporting pediatric patients and their families in managing complex health care needs that can be generalized and adapted for other conditions. Methods: A topical review and retrospective case report are provided to illustrate issues in the development of adherence and self-management, and to highlight clinical applications, for pediatric patients with severe hemophilia. Results: Individual, social, and contextual factors influence adherence in pediatric severe hemophilia. Interventions that support individual autonomy and competence, such as medical play and education, and social-contextual supports, such as communitybuilding and technological supports, have been shown to improve adherence and selfmanagement in pediatric severe hemophilia, particularly when tailored to patients' individual needs. Conclusions: Though the literature on adherence and self-management in pediatric severe hemophilia is limited, evidence of positive effects of adherence and self-management interventions is promising and could be applied to management of other complex conditions. Future work should examine emerging adults, and roles of health literacy, executive functioning, and pediatric psychologists in adherence and selfmanagement in pediatric severe hemophilia. Implications for Impact StatementPediatric severe hemophilia is a complex condition that is managed at home by children and families. Studying what works to promote the development of adherence and selfmanagement in such a complex condition can help families and providers understand how to manage and foster the development of adherence and self-management in patients with pediatric severe hemophilia and other complex health conditions.

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“…Medically complex children do, however, have the opportunity to attend medical summer camps, where they learn the same life-long skills as in a traditional summer camp, in addition to learning different coping mechanisms, management of their own illness, and altruism. [10][11][12][13][14] Therefore, the pandemic has the potential for greater negative biopsychosocial ramifications in the medically complex child. 11,15,16 Multiple studies have described the range of nonpharmaceutical interventions (NPIs) implemented in traditional summer camp settings.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of Safety Measures at a Medical Summer Camp During the SARS-CoV-2 Pandemic

Wilkinson

Neaton

Ata

et al. 2023

Wilderness & Environmental Medicine

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Improvements in Psychosocial Outcomes Following a Summer Camp for Youth with Bleeding Disorders and Their Siblings

Cited by 4 publications

References 44 publications

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus—An Integrative Review

Supporting the development of adherence and self-management in pediatric severe hemophilia.

Evaluation of Safety Measures at a Medical Summer Camp During the SARS-CoV-2 Pandemic

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