Concerns of Parents with Children Receiving Home-Based Pediatric Palliative Care

Abstract

CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received. OBJECTIVE(S): The objective of this study was to explore the concerns of parents who have a child in home-based PPC. METHOD(S): Semi-structured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child’s referral to home-based PPC. Children (57% male, Mage = 10.5 years, SD = 3.95, range = 4-18 years) had a range of diagnoses. Data were analyzed using inductive content analysis. RESULT(S): Parents’ concerns clustered into four main themes: (1) ensuring that their child’s remaining days were spent living well physically, emotionally, and socially; (2) uncertainty regarding their child’s diagnosis, prognosis, and treatments; (3) their child’s death (e.g., the process of dying and when it will occur); and (4) the family, including the impact of the child’s illness and death on siblings and wanting to cherish as much time together with family as possible. CONCLUSION(S): Parents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC, and point to critical areas for intervention for seriously ill children and the broader family. Copyright © 2020. Published by Elsevier Inc.