Emergency Care Impact Assessment (ECIA) Project: Exploring the impact of children’s hospice services upon hospice users and stakeholders.

AIM To explore the impact of the planned and emergency care provided by a children’s hospice on children and young people with life-limiting conditions, their families and stakeholders to inform future service development. METHODOLOGY A two phase mixed-method qualitative and quantitative study with young people, families, health and social care professionals and hospice staff. Phase1 Semi-structured interviews and focus groups (n=53) Phase 2 Electronic survey (n=82) Total (n=135) ANALYSIS Thematic analysis and descriptive statistics. SELECTED RESULTS • Families have limited or no other choice of alternative planned short breaks or emergency respite care provision when children’s hospice care is unavailable. • Families nor stakeholders had clear answers for how best to balance planned short breaks and emergency respite care provision, to enable the hospice to reach out to as many families as possible. • Participants spoke of genuine concerns about the lack of appropriate respite provision on children and family’s outcomes following discharge from the children’s hospice. CONCLUSION Families need regular respite and support to continue to be able to meet the child’s complex care needs. The lack of alternative respite care outside of and after children’s hospice discharge can have far reaching consequences for the child, family and society.