Caregiver Coping in the Aftermath of Sudden Unexplained Death in Childhood (SUDC)

Description

This data set derives from a survey of 243 caregivers of children lost to SUDC. It demonstrates that regardless of gender or time since loss, caregivers self-reported symptoms indicative of Prolonged Grief Disorder (PGD) (44.67%) and post-traumatic stress disorder (PTSD) (41.03%). Caregivers indicated that peer support was the most beneficial coping strategy, and female caregivers reported receiving more interpersonal support from peers, as well as family and friends. Despite this, female caregivers within the first 24 months of loss were particularly vulnerable to moderate anxiety and depression. These findings highlight the urgent need for increased awareness, support, and resources to provide targeted interventions to improve the well-being of caregivers and mitigate long-term psychological consequences.

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A national cross-sectional survey (n=243) was administered by the SUDC Foundation, a global organization dedicated to raising awareness, funding research, and providing support to those affected by SUDC. Eligible participants were aged 18 years or older, and were parents, legal guardians, or other primary caregivers who resided with the child at least part time in the three months prior to their death. This study received appropriate ethical approvals from Integreview (now Advarra) Institutional Review Board (protocol 2020-01). Registrants of the SUDC Foundation were emailed study information, inclusion criteria for self-selection, and a link to the survey. The study was active from May 22, 2020, to September 1, 2020. Participants completed an approximately 35-minute-long anonymous online survey, which included a consent form followed by questions related to demographic information, mental health symptoms, coping strategies, experiences with the death investigation process, and follow up medical care. Our analysis evaluated mental health symptoms and coping strategies.

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