| Summary |
Planned health care transition from pediatric to adult health care is necessary for adolescents and young adults with chronic diagnoses to have positive health outcomes. Medical specialty camps offer an opportunity for campers to connect with others who have similar conditions, learn about their conditions, and engage in health care transition education. This community engaged qualitative descriptive study aimed to describe how overall participation in medical specialty camps and participation in camp's transition focused activities are perceived and valued by campers with sickle cell disease or hemophilia. Nine pre-transition youth (16- 22 years) and four post-transition adults (22-36 years) who attended medical specialty camps run concurrently in southeastern United States participated in semi-structured interviews. Interviews were transcribed verbatim and open coding methods were used to analyze the data. Our research highlights the viewpoints of an underserved and under-researched population. Data analysis resulted in three overlapping themes: Preparing for Adjustment and Independence; Building a Shared Community; and Easing into Transition. Findings suggest that the participants appreciated the opportunity to meet campers with similar health care conditions and often developed long-term friendships. For pre-transition youth, their key transition related concerns were regarding communicating their condition to others, advocating for themselves, filling out health care paperwork, finding out about their new doctor and clinic team, and even about entering college. Their hesitancy in making the transition stemmed from pre-existing trusting relationships with their pediatric caregivers and comfort in that environment. The post-transition adults emphasized the importance of understanding their health care condition and communicating openly with their new health care providers. Participants advocated for more hands-on learning activities, while acknowledging benefits of camp attendance. They emphasized the need for camp programs to promote connection among youth with sickle cell or hemophilia as well as to improve the process of health care transition. This includes introducing the pre-transition youth to their adult doctor and clinic staff before the transition and discussing their medical condition in advance. Our findings, and feedback from the study partner suggest that using medical specialty camp settings could be viable venues for health care transition programming. Future research should examine the experiences of more medical specialty campers regarding what specific aspects of camp programming helps to prepare them for their health care transition. |
| General note | Presented to the Faculty of the Department of Human Development and Family Science |
| General note | Advisor: Priti P. Desai |
| General note | Title from PDF t.p. (viewed May 13, 2024). |
| Dissertation note | M.S. East Carolina University 2022. |
| Bibliography note | Includes bibliographical references. |
| Technical details | System requirements: Adobe Reader. |
| Technical details | Mode of access: World Wide Web. |
