Bereaved Parent Faculty

Pediatric end-of-life care skills (PECS) simulation-based workshops developed and effectively delivered locally incorporate the unique expertise of bereaved parents as educators.  A skilled interprofessional team optimally delivers pediatric end-of-life care emphasizing family-centeredness, thus it is essential to include the perspectives of bereaved parents, who have experienced the death of a child. To expand workshop frequency, our needs assessment identified an increased number of bereaved parent educators to feasibly maintain this valuable perspective at all workshops. Many examples of bereaved parent engagement for PECS education and advocacy exist, but we did not find a standard process or curriculum. Our objective was to develop and implement a process and curriculum for onboarding bereaved parent educators.

Our interprofessional PECS workshop advisory group (two bereaved parents, physicians, social workers, nurses, simulation educators) developed a five-part onboarding process for additional bereaved parent educators. Acknowledging the parents’ lived experience having cared for and experiencing the death of a child with serious illness and/or medical complexity, the group utilized trauma-informed care (TIC) framework.The TIC principles (safety, choice, collaboration, trustworthiness, empowerment, skill development) guided the intersection of previous PECS workshop standardized patient and medical educator orientations for the bereaved parent educators. The process included initial recruitment from local networks and onboarding.

The integration was designed with TIC framework to prepare the bereaved parents both personally and professionally to be clinician educators. The steps combined individual, small, and large group activities; relationship building; didactic content; experiential observation and learning; and structured debriefings. To evaluate participants’ ongoing engagement and the curriculum effectiveness, we conducted a post-session survey (after step 1) and structured debriefing (after steps 4 and 5) and plan a 6-month follow-up survey. The process was implemented over 5 months in 2023. 

Description of Pediatric End of Life Care Skills Workshop Bereaved Parent Onboarding

1. Information sessions
2-hour evening session, etc. Offered twice with expectation to attend once.
2. One-on-one meetings
1-hour meeting to build relationships, answer questions, and discuss prospective parent’s grief resources.
3. Orientation
Formal half-day workshop held at simulation center covering concepts of general medical education and simulation training plus PECS workshop specific content.
4. PECS Workshop observation.
Structured observation of half-day simulation-based PECS workshop then 1- hour debrief.
5. PECS workshop facilitation
Facilitation of half-day simulation-based PECS workshop in the bereaved parent educator role then 1-hour debrief.

6. Group Debrief sessions

1-hour meeting to build relationships, answer questions, attend to safety, and provide peer-support for grief. Sessions occurred at intervals after orientation, workshop observation and facilitation.