Culturally sensitive neonatal palliative care: a critical review

Author:

Redman Hayley1ORCID,Clancy Marie2,Thomas Felicity3

Affiliation:

1. Wellcome Centre for Cultures and Environments of Health, University of Exeter, The Queens Drive, Exeter EX4 4QJ, UK

2. Academy of Nursing, University of Exeter, Exeter, UK

3. Department of Health and Community Sciences, Wellcome Centre for Cultures and Environments of Health, University of Exeter, Exeter, UK

Abstract

Although there are known disparities in neonatal and perinatal deaths across cultural groups, less is known about how cultural diversity impacts neonatal palliative care. This article critically reviews available literature and sets out key questions that need to be addressed to enhance neonatal palliative care provision for culturally diverse families. We begin by critically reviewing the challenges to recording, categorizing and understanding data which need to be addressed to enable a true reflection of the health disparities in neonatal mortality. We then consider whose voices frame the current neonatal palliative care agenda, and, importantly, whose perspectives are missing; what this means in terms of limiting current understanding and how the inclusion of diverse perspectives can potentially help address current inequities in service provision. Utilizing these insights, we make recommendations towards setting a research agenda, including key areas for future enquiry and methodological and practice-based considerations.

Funder

Wellcome Centre for Cultures and Environments of Health

Publisher

SAGE Publications

Reference121 articles.

1. Royal College of Paediatrics and Child Health (RCPCH). State of child health infant mortality. [Internet], https://stateofchildhealth.rcpch.ac.uk/evidence/mortality/infant-mortality/#:~:text=Most%20deaths%20during%20childhood%20occur,and%2080%25%20of%20infant%20deaths (2021, accessed 25 October 2023).

2. Palliative care in the neonatal intensive care unit

3. National Institute Clinical Excellence (NICE). End of life care for infants, children and young people with life-limiting conditions: planning and management. NICE Guidelines. London: NICE, https://www.nice.org.uk/guidance/ng61/resources/end-of-life-care-for-infants-children-and-young-people-with-lifelimiting-conditions-planning-and-management-pdf-1837568722885 (2019, accessed 20 April 2023).

4. Together for Short Lives (TfSL). Children’s palliative care definitions. [Internet], https://www.togetherforshortlives.org.uk/changing-lives/supporting-care-professionals/introduction-childrens-palliative-care/ (2018, accessed 20 April 2023).

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