Psychosocial burden after the death of a child from cancer: Results of a bereaved parent survey

Abstract

Parents experience lasting psychological distress after a child’s death from cancer. Limited evidence exists regarding difficult life events, duration of psychosocial impacts, and associated risk factors among bereaved parents. Alex’s Lemonade Stand Foundation surveyed self-selected, bereaved parents regarding difficult life events and psychosocial wellbeing (life satisfaction, unanswered questions, and missing the care team) through a public, cross-sectional survey. 176 bereaved parents (89% mothers) participated a median of 7 y after their child’s death. The most difficult events were family vacations (80%), their child’s birthday (80%), and anniversary of their child’s death (76%). Only the latter did not improve with time. Greater life satisfaction was associated with male sex (ARR = 1.2, 95% CI:1.1–1.4) and being married/partnered (ARR = 1.2, 95% CI = 1.0–1.3). Having unanswered questions and missing the child’s team were associated with annual income <$50,000 (ARR = 1.2, 95% CI:1.1–1.2; ARR = 1.2, 95% CI:1.0–1.3, respectively). Pediatric oncology programs need robust bereavement programs that include prolonged contact with families.

Author contributions

CEW – Conceptualization, methodology, investigation, data curation, writing (original draft and review/editing)

LD – Conceptualization, methodology, investigation, data curation, formal analysis, writing (review & editing)

LT – Conceptualization, methodology, resources, writing (review & editing)

KMW – Conceptualization, methodology, investigation, funding acquisition, resources, supervision, writing (review & editing)

EEJ – Conceptualization, methodology, investigation, funding acquisition, resources, supervision, writing (review & editing)

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability statement

De-identified, individual-level data are available upon reasonable request.

Additional information

Funding

This work was supported by the Alex’s Lemonade Stand Foundation (My Childhood Cancer: Survey Series to K.M.W.) and The Children’s Health and Discovery Initiative of Translating Duke Health (to K.M.W). Role of funder: This work was supported by a grant from Alex’s Lemonade Stand Foundation (ALSF). The funder hosts and advertises the survey portal from which data in this manuscript were collected. The funder had no role in data analysis or interpretation, although an employee of ALSF (LT) is a coauthor of this manuscript in recognition of her significant contributions to constructing and piloting the surveys and her participation in reviewing the final version of the manuscript presented here.