1. The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey.
- Author
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Tatterton, Michael J., Fisher, Megan J., Storton, Helen, and Walker, Charlotte
- Subjects
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PERINATAL death & psychology , *ADVANCE directives (Medical care) -- Law & legislation , *HOSPICE care , *RESEARCH , *SOCIAL support , *PRENATAL diagnosis , *FAMILY support , *MEDICAL care , *QUANTITATIVE research , *ABORTION , *ORGANIZATIONAL goals , *SURVEYS , *FAMILY-centered care , *MEDICAL protocols , *RESEARCH funding , *INTERPROFESSIONAL relations , *CONTENT analysis , *PRENATAL care , *NEONATOLOGY , *PALLIATIVE treatment , *CHILDREN , *PREGNANCY - Abstract
Introduction: Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life‐limiting or life‐threatening condition. Little is understood about the role of children's hospice care and how it contributes to effective perinatal palliative care. Design: The study aims to answer the question "what is the role of children's hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?" Methods: An electronic survey was sent to all 54 children's hospices in the United Kingdom between May and June 2022. Results: Thirty hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last 5 years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life‐limiting or life‐threatening condition, underpinned with counseling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent–professional and interprofessional relationships. Conclusion: Children's hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life‐limiting or life‐threatening condition. The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. Clinical relevance: 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. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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