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

J Palliat Med. 2023 May;26(5):627-636. doi: 10.1089/jpm.2022.0299. Epub 2022 Dec 5.

Abstract

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.

Keywords: adolescent and young adult palliative care; care patient perspectives; palliative; program outcomes.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Cross-Sectional Studies
  • Humans
  • Neoplasms* / psychology
  • Palliative Care* / methods
  • Quality of Life / psychology
  • Retrospective Studies
  • Young Adult