"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

<b><i>Background:</i></b> 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. <b><i>Objectives:</i></b> Qualitatively examine patient and family home-based care experiences to formalize care ethics guidance for HBHPC. <b><i>Design:</i></b> Secondary thematic analysis of semi-structured, transcribed interviews (<i>n</i> = 14) of 18 participants. <b><i>Setting/Subjects:</i></b> 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. <b><i>Measurements:</i></b> Three stages of thematic analysis were conducted: line-by-line coding of text, descriptive theme development, and analytic theme generation. <b><i>Results:</i></b> 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 (<i>n</i> = 22) and sub-themes (<i>n</i> = 90) emerged and provided contextual meaning centered on a care ethic. <b><i>Conclusion:</i></b> 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.