Metadata
Title
Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data
Authors
Feudtner C; Nye R; Hill DL; Hall M; Hinds P; Johnston EE; Friebert S; Hays R; Kang TI; Wolfe J; Pediatric Palliative Care Research Network Shared Data and Research (PPCRN SHARE) Project Group
Year
2021
Publication
JAMA Network Open
Abstract
This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month period or a reunion camp. Thirteen parents completed open-ended surveys before and after each camp and six of these also completed interviews after the final camp. Six additional parents completed interviews after the reunion camp. Six staff working with families during the camps were also interviewed. Content analysis of surveys and thematic analysis of interviews revealed the aims, structure, and content of the camp. The findings suggest a model whereby shared experience allows for normalization and offers a nonjudgmental place to share stories, discuss difficulties come together as a family, and create a support network. These findings highlight the value of therapeutic recreation-based bereavement interventions for families whose child has died from serious illness.
Authors
Feudtner C | Friebert S | Hall M | Hays R | Hill DL | Hinds P | Johnston EE | Kang TI | Nye R | Pediatric Palliative Care Research Network Shared Data and Research (PPCRN SHARE) Project Group | Wolfe J