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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Article info
Publication history
Published online: May 29, 2021
Accepted:
May 4,
2021
Received in revised form:
April 16,
2021
Received:
February 26,
2021
Identification
Copyright
© 2021 Elsevier Inc. All rights reserved.
