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How Latine Families Navigate Pediatric Loss Amid Broken Systems: A Qualitative Study With Caregivers and Providers
Patricia Buzelli1, Tolu O Oyesanya, Angelli Aguilar
1Author Affiliations: Department of Nursing, Duke University School of Nursing, Durham, NC (Buzelli, Oyesanya, and Gonzalez-Guarda); and Department of Pediatric Palliative Care, Nicklaus Children's Hospital, Miami, FL (Aguilar).
Abstract:
This study explored the challenges and strengths shaping Latine families' experiences of pediatric loss in the United States context. Eighteen semistructured interviews with healthcare providers (n = 7) and bereaved Latine caregivers (n = 11) were carried out using an integrated qualitative descriptive and Liberation Psychology approach. Four themes emerged that are heavily shaped by individual and contextual factors: (1) Unsupportive and hegemonic systems, (2) caregiver and provider discordance regarding end-of-life care, (3) caregiver identity transcendence in the "natural distress of grief," and (4) supportive networks and their limitations. Results highlight sociocultural realities that inform needed structural, policy, and practice changes.
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