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

      Highlights

      • For youth with bleeding disorders, illness knowledge improved pre to post camp.
      • For youth with bleeding disorders, illness attitude improved pre to post camp.
      • For youth with bleeding disorders, illness benefit improved pre to post camp.
      • For healthy siblings, total hope improved pre to post camp.

      Abstract

      Purpose: Complications from bleeding episodes from hemophilia can interfere with children's lives and lead to negative psychosocial outcomes. The purpose of this study is to evaluate whether attitude toward illness, hope, perception of illness benefit and/or burden, and/or illness knowledge change for youth with bleeding disorders and their siblings following a five-day education and activity focused summer camp. We hypothesized that youth with bleeding disorders' attitude toward illness, hope, perception of illness benefit, and illness knowledge would improve after camp attendance, and perception of illness burden would decease after camp attendance. We hypothesized that siblings' hope and illness knowledge would improve after camp attendance.
      Design and methods: A total of 98 youth (M = 10.9, SD = 3.33, 61.2% male) who attended a bleeding disorder summer camp participated in this study. Fifty percent of participants were diagnosed with either Hemophilia A, Hemophilia B (5%), Von Willebrand Disease (VWD) (28.3%), or platelet deficiency (1.7%), with 38 campers consisting of healthy siblings. The camp hosted “Learning about Hemophilia” breakout sessions for campers. Participants completed self-report questionnaires on the first day and last day of camp.
      Results: Of participants with bleeding disorders, illness knowledge, perception of illness benefit, and attitude toward their illness significantly improved from pre-camp to post-camp. Hope did not significantly improve among youth with bleeding disorders. Healthy siblings' total hope significantly improved while illness knowledge remained constant.
      Conclusions: Summer camps are a promising intervention to improve psychosocial outcomes in youth with hemophilia and WVD.Conclusions: Summer camps are a promising intervention to improve psychosocial outcomes in youth with hemophilia and WVD.

      Keywords

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