Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

Collette J; Autrey AK; James C; Vaden A

Journal of Pain and Symptom Management

2024

child; adult; Caucasian; controlled study; female; human; social support; palliative therapy; grief; total quality management; personal experience; bereavement; pilot study; cross-sectional study; time of death; adolescent; caregiver; conference abstract; sample size; Hispanic; cause of death; married person; bereavement support; support group; leisure; needs assessment

Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where resources could be best utilized. Key Message: Identifying the unique needs of patients experiencing end of life and their families during the bereavement period is vital to the growth and development of our hospital's bereavement program. We completed a cross-sectional survey of families treated at a free-standing children's hospital to identify opportunities for improving bereavement services. Introduction: Providing social support and resources to bereaved families is vital to their healing process, and programs vary across the nation to fit the needs of their local communities. Currently, our hospital provides reading materials, sympathy cards, and external support group information for bereaved parents. Objective(s): Identify the impact of bereavement resources currently offered at our hospital and opportunities for improvement. Method(s): We developed a cross-sectional, electronic survey for bereaved caregivers of children who received care at our free-standing children's hospital and died 2 or more years ago. Survey domains included characteristics of the child's end of life experience, participant's bereavement experience, utilization of bereavement services/resources, and priorities for future bereavement program growth. Result(s): Of 66 eligible families, 12 (18.2% response rate with 92% completion rate) participated in our survey. Respondents were almost all mothers (92%), predominantly white (75%), non-Hispanic (92%), highly educated (50%), and married (67%). Patient age at time of death ranged from 21 days to 20 years old. The leading cause of death was cardiovascular (25%), and majority died in the hospital (67%). The first year was reported to be more difficult than second and third years. While no specific time frame during the first year was identified as most difficult, most caregivers reported the child's birthday (67%) and winter holidays (67%) to be particularly challenging. A hospital-wide memorial service (45%) and bereaved parent/caregiver advisory group (36%) to guide future support services were top priorities for future improvement. Conclusion(s): Additional support throughout the first year of bereavement, especially focusing on the child's birthday and winter holidays, could improve families' grief experiences. Further work is needed to increase sample size, diversify respondent demographics, and ensure generalizability of the results, in order to leverage these findings into a formalized bereavement program fitting the needs of our community. Keywords: Loss, Grief, Bereavement; Quality ImprovementCopyright © 2024

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