P0045 - Empowering Children with Serious Illness: Confidence, Independence and Self-Advocacy at Double H Ranch

Background: Empowerment encompasses having the knowledge necessary to influence one’s own behavior and positively impact one’s quality of life. Empowering children with serious illness is important because such children experience lower levels of self-esteem and a lack of independence and resilience, compared to healthy peers. Double H Ranch (HH) is a camp in the Adirondack region of New York that provides children, who would otherwise be ineligible to attend standard camps, unique opportunities to socialize with peers who have similar health experiences. Children with cancer, sickle cell, hemophilia, HIV and neuromuscular disease ages 6-16 attend weeklong summer sessions and engage in adaptive activities. Though HH strives to empower campers, there is no literature on camper perspectives and changes having attended camp. The aim of this study was two-fold: illustrate the importance of empowerment in children with serious illness and document through focused interviews how HH empowers children to develop a stronger social and emotional maturity, greater control over their medical needs and enhanced self-esteem.

Methods: In-person interviews were conducted with campers ages 14-16 and HH staff, including volunteer physicians, camp directors, a clinical social worker and a camp psychologist. Campers were asked how years of involvement with HH has affected them emotionally, socially and medically. Staff were asked to define the importance and avenues of empowerment at camp. A defined set of questions were proposed to all interviewees and responses were documented.

Results: In summer 2018, interviews were conducted with 9 HH staff members and 27 campers. Consistently, staff responded that there are three main methods of empowerment at camp: self-advocacy, confidence and independence. Camper interviews established that campers feel confident, independent and able to advocate for themselves due to camp. Many responses were disease specific, such as improved medical compliance in HIV campers. Staff and campers alike agreed that integration at children with various illnesses in the same setting enhances a child’s outlook on disease management.

Conclusion: Pediatric empowerment is a goal and a result of summer camp participation. In addition to the themes of confidence, independence and self-advocacy, empowerment occurs at camp because of personal reflection and enhanced self-awareness, promotion of self-esteem, decrease in negative emotions and development of new relationships within one’s support network.