Background Perinatal palliative care (PPC) describes the holistic and supportive management of a fetus, neonate or infant (baby) with a life-limiting or life-threatening condition (LLLTC). It offers psychological and emotional support to families and supports the clinical needs of babies. Children’s hospices (hospices) provide a range of PPC services, however, little is understood about the role of hospice care and how it contributes to effective PPC (Tatterton, Fisher, Storton, et al. J Nurs Scholarsh. Early view. 1– 10. 2022).
Aim To understand how children’s hospice services support families during the perinatal period, and how they perceive the impact of, and barriers and facilitators to providing PPC.
Methods An electronic survey was sent to all 54 children’s hospices in the United Kingdom in June 2022. In the survey, hospices were asked if they would be willing to host a focus group to explore the experiences of staff members. Invitations were sent to those hospices who indicated a willingness to take part in September 2022. Qualitative data were analysed using framework analysis.
Results Thirty hospices responded to the survey, representing 54% of the sector. All regions of all four countries were represented. Eighteen practitioners participated in three focus groups. Hospices took a range of approaches to providing PPC, working with NHS Teams, most commonly fetal medicine and neonatal services. Care was usually provided from the point of diagnosis or recognition of a LLLTC. Advance care plans were an important element of effective perinatal palliative care, strengthening parent – professional and interprofessional relationships (Tatterton & Fisher. Palliat Med. 2023; 0:0). Six themes were identified from focus group transcripts: early referral, joint working, care planning, focus of care, perceptions of hospice care by neonatal staff and neonatal staff education.
Conclusions The family-centered approach to care, from a broad, biopsychosocial perspective means that hospices make an important contribution to both the clinical needs of babies, and psychological needs of families antenatally, in the neonatal period and after death.
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