'The Holy Grail of PKU Support': Exploring the Psychosocial Impacts of Camps for Kids with Phenylketonuria

Ava Jere Henson, MS (Advisor: Megan Morand, MS, CGC)

          Individuals with phenylketonuria (PKU) face unique psychosocial struggles such as social isolation, bullying, frustration, and embarrassment, largely due to the strict diet used to manage the condition. Disease-specific camps (DSCs) allow children with chronic and/or life-threatening conditions to enjoy a typical camp experience in a medically safe environment. The psychosocial impacts of other DSCs on individuals with health challenges have been described, demonstrating that these camps have a positive impact on social support, help foster strong peer relationships, and have resulted in increased self-confidence as well as acceptance of themselves and their diagnosis. However, the impacts regarding camps for children with PKU have yet to be explored. The goal of this study was to describe the psychosocial impacts of attending camps for children with PKU, such as Camp PHEver, a six-day summer camp in Burton, Texas for children with PKU and their unaffected siblings. We conducted a qualitative study consisting of semi-structured interviews with 20 individuals who were current or former Camp PHEver campers. Interview questions explored what impact, if any, attending camps for children with PKU, such as Camp PHEver, had on their self-esteem, self-acceptance, and relationships. Inductive thematic analysis of interview responses identified three overarching themes: camp has an overwhelmingly positive impact on self-esteem and self-acceptance; camp fosters important PKU connections and relationships; and overall, camp has a significant and long-term impact on campers when it comes to their self-esteem, acceptance of their PKU, and relationships. Our data demonstrated that camps for children with PKU, such as Camp PHEver, have similar psychosocial impacts to other DSCs. This study uniquely described PKU camps as the most impactful PKU experience when it comes to psychosocial aspects such as self-esteem, self-acceptance, and relationships, and that these impacts are long term. This study further reinforces that PKU camps are a powerful and supportive resource for children and adolescents with PKU, with impacts seen not just as a child, but also into adulthood.

Advisory Committee:

• Megan Morand, MS, CGC, Chair
• Colin Bixler, MGC, CGC
• Jessica Corredor, MS, CGC
• Hope Northrup, MD
• Kate Richardson, MS, CGC
• Paige Roberts, MS, RD, LD

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