“This Kind of Thing is Part of His Legacy”: Bereaved Parents’ Experiences of Participating in Interview-Based Research

Background: Every year, a significant number of parents/caregivers experience the loss of a child, many of whom have received palliative care services. The resultant consequences of grief on their physical and psychological well-being can be significant. Little is known about bereaved parents/caregivers experience with or perceptions about participating in bereavement-focused research. Objective: To explore bereaved parents' perceptions of participating in three research studies about their loss experiences and legacy perceptions. Design: A retrospective secondary analysis was conducted using qualitative and archival data drawn from three prior studies. Setting/Subjects: Participants included parents/caregivers of 44 children (ages from birth to 18 years) who died between 2000 and 2020 at a freestanding academic children's hospital in the United States. Measurements: Transcripts from semi-structured interviews and documentation of email communications were analyzed using an inductive coding approach grounded in psychological phenomenology. Results: Participant experiences of and motivations for participating in bereavement-related research were organized into two themes: 1) a means of extending the child's legacy and 2) an avenue for self-expression and gratitude. None of the participants across studies indicated any discomfort in, dissatisfaction with, or ill feelings toward bereavement research involvement. Conclusions: Bereaved parents/caregivers described their research participation in personally meaningful and altruistic ways and reported gratitude for their involvement in and the focus of the research. With careful attention to bereaved parent/caregiver participant needs and preferences, it is possible to produce impactful family-centered palliative care research that can improve anticipatory and bereavement service provision.