What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

Abstract

Context. Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. Objectives. To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. Methods. Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. Results. Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P ¼ 0.02). Furthermore, bereaved parents rated the Caregiver support at the end of life domain significantly higher than parents who were currently caring for their child (P ¼ 0.04). No other significant differences in domain ratings were observed. Conclusion. Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts. J Pain Symptom Manage 2020;-:-e- .

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

“…Parent participants' prioritization of the domains are described elsewhere [52]. In brief, highest-ranked domains included Physical Aspects of Care: Symptom Management, Psychological/Emotional Aspects of Care: Child, and Care Coordination [52]. We then calculated weighted item scores and retained the top 20 items.…”

Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study

“…It is possible that children and families simply wanted to maintain a relationship with a few essential providers even at end of life. 27,28 Pediatric concurrent hospice care might enable children and families to minimize such discontinuity of care by providing care with both the physician and hospice care teams, while honoring the decision-making of parents. 29 Our finding suggests that concurrent hospice care might be responsive to the preferences and needs of children and families that promote continuous, patient-and family-centered care.…”

Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study

“…Once the family agrees to receive the home-based PPC service, a nurse from Rachel House is allocated to the patient and visits the family regularly. Some of the greatest fears that parents have while caring for their children living with life-limiting or life-threatening illness at home is not knowing what to do, nor how to cope with the children’s daily needs and deal with their deteriorating condition [ 29 – 31 ]. The central tenet of holistic care for both the patient and family in PPC is implemented even at the home setting [ 29 – 31 ].…”