"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.
James RujimoraAnna SwygertAndrew L WalkerZachary McNieceEunhui YoonMercedes MachadoKenneth MyersEric RichardsonEmilie LenesLindsay HebertEmily MarchiZoe Arthurson-McCollJoanne LagmayAna PuigPublished in: Journal of palliative medicine (2023)
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.
Keyphrases
- palliative care
- mental health
- advanced cancer
- quality improvement
- end stage renal disease
- healthcare
- social support
- ejection fraction
- newly diagnosed
- systematic review
- chronic kidney disease
- peritoneal dialysis
- public health
- depressive symptoms
- primary care
- young adults
- patient reported outcomes
- mental illness
- acute care
- patient reported
- health insurance