Bereaved Caregivers as Educators in Pediatric Palliative Care: Their Experiences and Impact

Abstract

Background: With the continuing growth of pediatric palliative care, there is an increasing need to develop effective training for health care professionals. Bereaved parents have participated in the training of health care professionals utilizing curriculum from the Initiative for Pediatric Palliative Care (IPPC), but the experience of bereaved parents as educators has not been studied. Objectives: This qualitative research examined the experience of bereaved parents involved in pediatric palliative care education of health care professionals and the challenges and possible benefits for the health care professionals. Methods: Nine bereaved parents and eleven health care professionals were interviewed about their experiences in a pediatric palliative care education program utilizing the IPPC curriculum. The interviews were recorded, transcribed, coded and analyzed for themes and subthemes. Results: Major themes found were a sense of purpose for the parents and benefits and challenges for both parents and professionals. The experience for parents contributed to their meaning-making for both their children's lives and deaths. Parents and professionals identified mutual learning and increased mutual understanding. Some professionals noted that the presence of parents may have limited the openness of discussion of the professionals and parents acknowledged challenges of emotional management in their participation in the educational program. Both parents and professionals recognized and described challenges involved in working sensitively with patients and families without being overwhelmed by the intensity of situations where children die. Conclusion: More benefits than burdens were experienced by both parents and health care professionals from the participation of bereaved parents in the palliative care trainings.

Going straight to the source: A pilot study of bereaved parent‐facilitated communication training for pediatric subspecialty fellows

“…Parents reported that this training program provided them with an invaluable opportunity to enhance their child's legacy by teaching future physicians the requisite skills by which to improve communication with patients and families. Our findings corroborate prior research in which bereaved parents played a beneficial role in the training of care providers, 29 and further suggest that the participation of bereaved parents in educational sessions may contribute to positive grief adjustment and facilitate meaning-making for bereaved parent educators as well.…”

“…Previous work with this and other groups of bereaved parents has revealed that telling their child's story is an important component of personal bereavement and meaning‐making : “…You find things that, through your grief journey, hopefully, you can find things that bring meaning to what you've experienced and what you've been through.” Parents reported that this training program provided them with an invaluable opportunity to enhance their child's legacy by teaching future physicians the requisite skills by which to improve communication with patients and families. Our findings corroborate prior research in which bereaved parents played a beneficial role in the training of care providers, and further suggest that the participation of bereaved parents in educational sessions may contribute to positive grief adjustment and facilitate meaning‐making for bereaved parent educators as well.…”

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

“…Of note, some follow‐up efforts have been perceived as inadequate, suggesting the importance of training staff. In addition, involving bereaved parents in developing and administering bereavement education programs and interventions has been shown to have great value for them, further giving meaning to their child's life …”

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

“…Bereaved parents have been utilized in educating health-care professionals in several settings, including being a part of a parent panel at conferences, or participating in facilitated, small-group discussions with staff. 56 , 59 – 62 While most family members have been parents who have experienced the death of a child, grandparents and siblings have also participated. A study examining a program that utilized bereaved parents in an 8-week luncheon training series for health-care providers was evaluated to study motivations, expectations, challenges, benefits, and meaning-making.…”