Publication
"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
Aultman J, Gilliland M, Bish B, Smith S, Friebert S, Grossoehme D · Journal of Palliative Medicine · 2025
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. Objective(s): Qualitatively examine patient and family home-based care experiences to formalize care ethics guidance for HBHPC. Design(s): 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. Result(s): 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(s): 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. Copyright 2025, Mary Ann Liebert, Inc., publishers.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.