"I Used to Feel my Child Was...the Property of the Hospital": An Examination of an Ethic of Care for Pediatric Home-Based Hospice and Palliative Care.

Abstract

Background: Home-based hospice and/or palliative care (HBHPC) is an important pediatric care modality offering continuity of care and a deeper understanding of patient and family needs. There is limited guidance to address multi-faceted approaches to care in home-based settings through a care ethics model. Objectives: Qualitatively examine patient and family home-based care experiences to formalize care ethics guidance for HBHPC. Design: Secondary thematic analysis of semi-structured, transcribed interviews (n = 14) of 18 participants. Setting/Subjects: A group of 17 family caregivers and one adolescent/young adult patient receiving HBHPC provided by two regional pediatric health systems in the United States. Measurements: Three stages of thematic analysis were conducted: line-by-line coding of text, descriptive theme development, and analytic theme generation. Results: Transcripts from 18 participants (88% female; 12% male) were analyzed. Four descriptive themes were generated through deductive analysis: relationships; home health environment; ways of caring; and values. Several analytic themes (n = 22) and sub-themes (n = 90) emerged and provided contextual meaning centered on a care ethic. Conclusion: A care ethic model is present in HBHPC experiences and, with validation, can offer guidance in the acknowledgment and delivery of care among professional and family caregivers.