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Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences

Mendizabal-Espinosa, RM; Price, JE; (2020) Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences. Journal of Neonatal Nursing 10.1016/j.jnn.2020.08.005. (In press).

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Abstract

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies.

Type: Article
Title: Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences
DOI: 10.1016/j.jnn.2020.08.005
Publisher version: https://doi.org/10.1016/j.jnn.2020.08.005
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Neonatal; Palliative care; Children's hospice; Family-centred care; Referral
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Social Research Institute
URI: https://discovery.ucl.ac.uk/id/eprint/10112244
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