Professional carers' experiences of providing a pediatric palliative care service in Ireland.
In 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.
Clarke
Jean
J
Dublin City University, Ireland.
Quin
Suzanne
S
D000293:Adolescent; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D002648:Child; D003152:Community Health Nursing; D017281:Cost of Illness; D003657:Decision Making; D019988:Children with Disabilities / Q000523:psychology*; D017144:Focus Groups; D006801:Humans; D007494:Ireland; D009723:Nurse-Patient Relations; D010166:Palliative Care / Q000523:psychology*; D010371:Pediatric Nursing; D011368:Professional-Family Relations; D036301:Qualitative Research; D012944:Social Support; D011795:Surveys and Questionnaires; D019452:Terminally Ill / Q000523:psychology