Caring for children and families in the community: Experiences of Irish palliative care clinical nurse specialists

Abstract

An increasing number of children require care at home owing to life-limiting illness. In addition, there is growing recognition of the specific care needs of such children and their families, and it is anticipated that recent developments in children's palliative care will result in more people accessing these services. In the Republic of Ireland (ROI), community palliative care clinical nurse specialists (CNSs), who are not registered children's nurses, contribute significantly to the support of these children and families. This study aimed to obtain a picture of the current nursing service that would help to determine whether the needs of these patients are being met. Seven community palliative care CNSs from across one health region in the ROI participated in a focus group. Four key themes emerged: gaining access to the child and family, role complexities, pressures of caring, and support strategies. Provision of community children's palliative care by the CNS is complex. The participants demonstrated their commitment to consult, coordinate, negotiate, and ultimately deliver the care required by children and families, but against a background of issues relating to accessing the patient and family, the complexity of the CNS role, and the pressures that such work incurs.