• Jean Clarke and Suzanne Quin.
• Dublin City University, Ireland.
• Qual Health Res. 2007 Nov 1;17(9):1219-31.

AbstractIn this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.

22 keywords...

hide…