128 An Exploratory Study of Palliative and Terminal Care for Children and Their Families (Patch)

Abstract

Background and aims: Embedded in future direction within the field of palliative care for children and families is the need for a more substantive research to underpin care provision. This interpretative qualitative study aimed to investigate bereaved parent and health care professional perspectives on developing care and services for children with life-limiting conditions at the end-of-life.Methods: A novel approach to data collection was adapted. Semi-structured interviews were used to capture the experiences of 25 bereaved parents (mothers and fathers). Five focus groups with health and social care professionals used a consensus building technique, about how services could be developed in line with the issues identified by parents as priorities.Results: Resonance in issues experienced in the context of caring for a child at the end of life, were noted between parents and professionals. Issues included: anxieties around ‘truth tellingâ’, symptom management, emotional impact, sibling needs, relationships and bereavement support. In terms of the differences between parent and professional experiences, two dimensions of service provision are of particular note, late referral to hospice and lack of services in the community, both of which dominated the accounts of parents whose children had non-malignant conditions but were ranked as relatively unimportant by service providers.Conclusions: More structured bereavement support for parents was identified across the professional groups as most important in future service development. Early referral to hospice service was ranked highly, particularly amongst hospice staff, whereas more structured staff support was ranked higher by professionals caring for children with cancer.