The role of hospice in the transition from hospital to home for technology-dependent children-A qualitative study.

Abstract

To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable. This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology. Data collection was carried out in 2013. Interviews took place with parents (n=5) and focus groups with professionals (n=26) who had experience of step-down care. Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs. The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.