A Consensus for Change: Parent and Professional Perspectives on Care for Children at the End-Of-Life

Abstract

The objective of this study was to investigate health and social care professionals' perspectives on developing services for children with life limiting conditions at the end-of-life using issues identified by bereaved parents as priorities. The study adopted qualitative methodology using nominal group technique in focus groups (n = 5) to collect data from 35 health and social care professionals. Six issues were identified across professional groupings as particularly challenging within the context of caring for children at the end-of-life: truth telling; symptom management; communication with, and relationships between families and professionals; emotional impact, the withdrawal of feeding or treatment and sibling support. Strong resonance was noted between professionals and parents in the emphasis placed on issues related to talking about death (to child and siblings) and decision-making about the withdrawal of treatment. Conversely, late referral to hospice care and lack of services in the community dominated accounts of parents whose children had non malignant conditions, but were not prioritized by professionals. Although the latter focused on the need for and challenges associated with optimizing symptom management, most parents viewed symptom control as highly effective. Caring for a dying child is a multidimensional experience for both parents and professionals. Convergence of thinking carries three main implications for service development. Firstly, the need for “joined up” palliative care services, particularly concerning timely referral to the range of support services. Secondly, more structured bereavement services. Third, within an ethos of family centered care, needs of siblings should be addressed effectively.

• Children
• end-of-life
• parents
• professionals
• service development

Acknowledgements

Thanks to Dr. Jackie Parkes for her support and input during the study. Thanks also to the Sandra Ryan Internal Fellowship School of Nursing, Queen’s University Belfast, for funding this study.