“Holding Families in Uncertainty”: A Framework Analysis of the Role and Impact of Children's Hospices in the Provision of Perinatal Palliative Care

Abstract

There is growing international evidence of the benefits of early perinatal palliative care for babies and their families. Despite this, inconsistency remains in ways care is provided by services including fetal medicine, maternity and neonatal services, and children's hospices. The aim of this study was to answer the question “ What are the benefits and barriers to family-centered perinatal advance care planning from the perspective of professionals involved in the care of neonates and infants with life-limiting conditions?” Three focus groups comprising hospice practitioners were held across the UK. A lack of awareness of the role of hospices was described as the biggest barrier to referral to hospice services. Practitioners unanimously described having a physical presence alongside teams, as being the biggest contributor to improved multiagency working, facilitated through joint working and education provision. Early referral to hospice services, in parallel with curative services led to better outcomes and experiences of families, according to participants.