“It’s a Different Conversation”: Qualitative Analysis of Pediatric Home-based Hospice/Palliative Care Visits’ Perceived Value

Abstract

Introduction: Home-based hospice and/or palliative care (HBHPC) is an important and increasingly utilized aspect of care for children with serious conditions—those with high mortality risk, which either impacts their quality of life or carries a significant caregiver burden. Provider home visits are a core feature; however, the travel time and human resource allocation are significant challenges. Balancing the appropriateness of this allocation requires further characterization of the value of home visits to families and identification of the value domains of HBHPC for caregivers. For study purposes, we defined a “home visit” as an in-person visit by a physician or advanced practice provider to a child’s residence. Methods: The methods include a qualitative study using semistructured interviews and a grounded theory analytic framework enrolled caregivers of children aged 1 month to 26 years receiving HBHPC from either of 2 U.S. pediatric quaternary institutions between 2016 and 2021. Results: Twenty-two participants were interviewed; the mean (SD) interview duration was 52.9 (22.6) minutes. The final conceptual model has 6 major themes: communicating effectively, fostering emotional and physical safety, building and maintaining relationships, empowering the family, seeing the bigger picture, and sharing burdens. Conclusions: Caregiver-identified themes demonstrated improved communication, empowerment, and support from receiving HBHPC, which can facilitate enhanced family-centered, goal-concordant care.

Changing the Landscape of the Neighborhood

“…The home-based pediatric palliative APRN provides care that cannot be provided in the hospital or clinic setting alone, including an enhanced family-centered approach, cultural sensitivity, and the socialization and enriched dignity of the child. 44 Home-based pediatric palliative APRNs provide care that can reduce the severity of symptom burdens, improve quality of life, allow more control over their child's health, shorten lengths of stay when hospitalized, promote recovery from hospitalizations, prevent rehospitalizations, and reduce health care costs overall. 15 They have unique opportunities to connect to extended family and members of the community care team working with the child (eg, school, rehabilitation therapies, primary care providers, home nursing companies, durable medical equipment companies).…”