"It Becomes a Family I'm a Part of We Get to Carry Each Other": Themes from Qualitative Interview of Patients Enrolled in an Inpatient Palliative Care Support Program for Adolescents and Young Adults.

Background: The pediatric palliative care literature provides little evidence regarding the lived experiences of adolescents and young adults (AYAs). Objectives: We sought to evaluate the aspects of a palliative care peer support program, which were most helpful to patients, and identify areas for improvement to better address their psychosocial needs. Design: This was a retrospective, cross-sectional study, which described self-reported Streetlight program evaluation using thematic analysis of interviews with AYAs. A total of 10 interviews was completed. Setting/Subjects: Thirty-three current and former Streetlight participants (13-30), enrolled in the Streetlight program for at least six months, were recruited during hospital admissions and clinic visits at UF Health Shands Hospital in the United States. Of the 33, 2 participants died before interviews could be conducted. A total of 10 interviews were conducted. Results: Thematic analysis of the 10 individuals identified 5 themes. They were (1) normalization of life in hospital, (2) mental health and instillation of hope, (3) companionship and connection, (4) diversity of volunteers, and (5) gratitude. Conclusions: Results suggest that AYAs who participated in a peer support, palliative care program benefitted from their exposure to volunteer social support. Addressing the need for continued study of this population provides opportunities to expand peer support, pediatric palliative care programs to other hospitals and care facilities.

A Novel Palliative Care Peer Support Program for Adolescents and Young Adults: Survey and Factor Analytic Study.

Background: Palliative care literature indicates a dearth of programs addressing the psychosocial needs of adolescents and young adults (AYAs). Objectives: This study assessed patient-reported experiences of a palliative care peer support program, analyzed psychometric qualities of the program evaluation, and examined associations with quality-of-life scores to assess validity and potential impact on aspects of AYA quality of life. Design: This retrospective, cross-sectional study described self-reported Streetlight program evaluation and quality of life of AYA patients, exploratory factor analysis of survey responses, and analysis of associations with quality of life. Setting/Subjects: AYA participants (13-30) enrolled in the Streetlight program for at least six months were recruited during hospital admissions and clinic visits at UF Health Shands Hospital. Results: Participants' (n = 69) scores were high for Youth Quality of Life Instrument-Short Form (YQOL-SF) (82.6 of 100), and Streetlight evaluations (4.47 of 5). Patients endorsed themes of: high-quality friendships with volunteers, transformative impacts to wellbeing, and benefits to mental health and coping in open-ended responses. Analyses identified three factors explaining 61% of variance in Streetlight program evaluation responses: "Friendships and Support" (26%); "Coping, Family, and Providers" (20%); and "Diversion and Respect" (15%). Significant positive associations were found between Streetlight evaluation scores and YQOL-SF Belief in Self and Family factor scores, as well as between Streetlight evaluation Friendships and Support factor scores, and YQOL-SF total and factor-specific scores. Conclusions: Results suggest that the Streetlight program is a viable model to facilitate positive experiences, opportunities for socialization, and meaningful peer support for AYA patients.