Feasibility and Perceived Benefits of a Framework for Physician-Parent Follow-Up Meetings After a Child’s Death in the PICU*

Abstract

Objective To evaluate the feasibility and perceived benefits of conducting physician-parent follow-up meetings after a child’s death in the PICU according to a framework developed by the Collaborative Pediatric Critical Care Research Network (CPCCRN). Design Prospective observational study. Setting Seven CPCCRN affiliated children’s hospitals. Subjects Critical care attending physicians, bereaved parents, and meeting guests (i.e., parent support persons, other health professionals). Interventions: Physician-parent follow-up meetings using the CPCCRN framework. Measurements and Main Results Forty-six critical care physicians were trained to conduct follow-up meetings using the framework. All meetings were video recorded. Videos were evaluated for the presence or absence of physician behaviors consistent with the framework. Present behaviors were evaluated for performance quality using a 5-point scale (1=low, 5=high). Participants completed meeting evaluation surveys. Parents of 194 deceased children were mailed an invitation to a follow-up meeting. Of these, one or both parents from 39 families (20%) agreed to participate, 80 (41%) refused, and 75 (39%) could not be contacted. Of 39 who initially agreed, three meetings were canceled due to conflicting schedules. Thirty-six meetings were conducted including 54 bereaved parents, 17 parent support persons, 23 critical care physicians and 47 other health professionals. Physician adherence to the framework was high; 79% of behaviors consistent with the framework were rated as present with a quality score of 4.3±0.2. Of 50 evaluation surveys completed by parents, 46 (92%) agreed or strongly agreed the meeting was helpful to them and 40 (89%) to others they brought with them. Of 36 evaluation surveys completed by critical care physicians (i.e., one per meeting), 33 (92%) agreed or strongly agreed the meeting was beneficial to parents and 31 (89%) to them. Conclusions Follow-up meetings using the CPCCRN framework are feasible and viewed as beneficial by meeting participants. Future research should evaluate the effects of follow-up meetings on bereaved parents’ health outcomes.

Bereavement Follow‐Up After the Death of a Child as a Standard of Care in Pediatric Oncology

“…A variety of practices are used when there is follow‐up, including making phone calls; sending cards; attending funerals; providing information and resources; connecting parents with other bereaved parents; acknowledging birthdays, holidays, and anniversaries; visiting the family; holding family meetings; and organizing memorial services . Qualitative studies have found that phone calls and family meetings after the child's death are beneficial, helping parents feel like their child is remembered, facilitating meaning‐making, responding to unanswered questions about their child's care, reassuring them they did everything they could, and providing a sense of closure . Of note, some follow‐up efforts have been perceived as inadequate, suggesting the importance of training staff.…”

A Provider-Based Survey To Assess Bereavement Care Knowledge, Attitudes, and Practices in Pediatric Oncologists

“…Despite a growing recognition that bereavement care is inherent to good clinical care, physicians often receive little training on how to compassionately and professionally communicate with families after a loss. 14,15,18,21,29,30 Many physicians learn about bereavement care from mentors or through a ''trial and error'' approach rather than through dedicated training. 18 Most pediatric oncology fellows do not receive specific education in provision of bereavement care as this is not part of the required curriculum.…”

Meaning making during parent–physician bereavement meetings after a child’s death.

“…The purpose of the original study was to assess the feasibility of conducting bereavement meetings as described by the CPCCRN framework (Eggly et al, 2011). Detailed information about recruitment and other procedures for the original study is provided elsewhere (Meert et al, 2014). The CPCCRN is a multicenter research network consisting of seven U.S. tertiary care academic pediatric centers and a data coordinating center.…”