Palliative care needs of pediatric patients their families: a phenomenological study of multidisciplinary pediatric palliative care team experiences

摘要

In the United States, more than 1 million children may be suffering from a life-limiting condition (Ruston and Catlin, 2002, p. 57) for which there is no reasonable hope for cure or long-term survival (Fraser et al, 2012, p. 923). However, less than one percent of these children and their families benefit from the provision of pediatric palliative care (Stayer, 2012, p. 350), which is an innovative health care model designed to address their physical, emotional, psychosocial and spiritual needs from diagnosis through end-of-life. During the last decade, pediatric palliative care has begun to secure a foothold as an emerging health care specialty (Crozier and Hancock, 2012, p. 198), but a dearth of literature has left the lived experience of children and their families poorly understood. Therefore, the Pediatric Palliative Care Study is a qualitative research study that utilizes interpretative phenomenological analysis to address two objectives: (1) understand and articulate the comprehensive lived experience of caring for children with life-limiting conditions and their families and (2) delineate how the collective experiences provide insights into needs that can be addressed by pediatric palliative care. The study was conducted at four research sites within Providence Health & Services. In total, nine major themes emerged from the experiences of 27 multidisciplinary care team providers who participated in the study. The themes have been framed from the perspective of the child and family: 1) Develop an innovative approach to caring for me, (2) Place me at the center of care, (3) Care for me as a whole person, (4) Be my guide, (5) Educate and prepare me for what I need to know, (6) Come alongside me, (7) Cultivate the plan and purpose for my life, (8) Be my voice and help me find my own and (9) Help me thrive. The analysis also contributed to an overarching statement about the experience that articulates the interconnectedness between the themes and creates a story of the phenomenon. The study presents seven implications for future practice related to (1) balancing matters of health care design with the human experience, (2) addressing the aims of health care reform legislation, (3) developing care models for home-based settings, (4) customizing care and developing solutions from the perspective of families, (5) educating about palliative care, (6) understanding the skills needed for palliative care providers and (7) improving data reporting for palliative care. Moreover, the study offers three contributions to extant literature, including: (1) validating and refining the WHO definition of palliative care, (2) completing an assessment of the adult versus pediatric palliative care literature from 2011-2014 and (3) addressing a known gap in the literature by offering the first IPA study to articulate the comprehensive lived experience. Limitations of the study and implications for future research are delineated as a research agenda for those seeking to build upon the study findings.