Citation

Levy C, Drouin K, Dorsett A, Sood E. Pediatrics 2021; ePub(ePub): ePub.

Copyright

(Copyright © 2021, American Academy of Pediatrics)

DOI

10.1542/peds.2021-052943

PMID

34702721

Abstract

Whether a child dies suddenly or after a long battle against a serious illness, the entire family is forced to make an unimaginably painful transition. This new reality may involve an adjustment in one’s identity, a loss of community, and an entrance into a new community of bereaved families. Studies show that death of a child can have long-term adverse effects on parental and sibling physical and mental health; indeed, parents and siblings have an increased risk of mortality after such a death.1–3 Although parental preparedness around end of life is fraught with complexities,4 the goal of effective bereavement care is to help families heal and process a child’s death while making the difficult transition to functioning with their grief and still finding joy in life and relationships.5 Yet feelings of abandonment persist, suggesting the health care system needs to do a better job supporting families facing this devastating transition.

To better understand the unmet needs of newly bereaved families, Dr Levy (palliative medicine physician), Kristin Drouin (clinical social worker and bereavement counselor), and Dr Sood (psychologist) partnered with Ady Dorsett, a bereaved mother who developed and continues to oversee Hayden’s Heart. Hayden’s Heart is a well-established nonprofit organization that supports pediatric patients living with and dying from congenital heart disease (CHD) and their families. Ady previously collaborated with Dr Sood on a qualitative study of the psychosocial needs of families affected by CHD, including bereaved families.6 She then met with Dr Levy, Kristin Drouin, and Dr Sood to develop suggestions for clinicians on how best to support families anticipating and after the death of a child. The shared vision is one that incorporates Ady’s insights based on her family’s experience and the wisdom she has accumulated through supporting almost 400 bereaved families, together with the clinician authors’ interprofessional experiences working with seriously ill pediatric patients and their families throughout their disease trajectory and after their death ...

Language: en