Abstract
Cancer is the leading disease-related cause of death for children in the United States; however, limited data exists on caregivers’ needs and evidence-based bereavement interventions are lacking. This is a cross-sectional study of primary caregivers of children who died from cancer. Participants completed five surveys assessing well-being and an optional semi-structured, in-depth qualitative interview. Caregiver’s greatest unmet needs were finding meaning in the death, personal wellness, and social activities. Bereaved caregivers with greater unmet needs reported poorer quality of life in the energy/fatigue (p = .01), role limitations due to emotional problems (p = .01), pain (p = .01), and emotional well-being (p = .02) domains. Interview themes elicited include inadequate bereavement services, support for siblings, desired contact with the medical team, and connections to other bereaved caregivers. Findings support the need for intensive, evidence-based bereavement programs for families of children who died from cancer, to attempt to mitigate poor bereavement-related outcomes.
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