Palliative care for infants with life-limiting conditions: integrative review

Rebecca Iten; Moira O'Connor; Fenella J Gill

doi:10.1136/spcare-2023-004435

Palliative care for infants with life-limiting conditions: integrative review

BMJ Support Palliat Care. 2023 Dec 9:spcare-2023-004435. doi: 10.1136/spcare-2023-004435. Online ahead of print.

Authors

Rebecca Iten^{1

2}, Moira O'Connor³, Fenella J Gill^{3

2}

Affiliations

¹ Curtin University, Perth, Western Australia, Australia rebecca.iten@curtin.edu.au.
² Perth Children's Hospital, Nedlands, Western Australia, Australia.
³ Curtin University, Perth, Western Australia, Australia.

PMID: 38123923
DOI: 10.1136/spcare-2023-004435

Abstract

Background: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation.

Objective: To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions.

Methods: An integrative review design. MEDLINE, CINAHL, ProQuest, Cochrane, Joanna Briggs Institute and EMBASE were searched for research published in English language, from 2010 to 2022, and peer reviewed. Critical appraisal was completed for 26 patient case series, 9 qualitative, 5 cross-sectional and 1 quality improvement study. Data analysis involved deductive content analysis and narrative approach to summarise the synthesised results.

Results: 37 articles met the eligibility for inclusion. Two models of palliative care delivery were examined, demonstrating differences in care received and experiences of families and health professionals. Health professionals reported lack of palliative care education, challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions.

Conclusion: There are complex issues surrounding the provision of palliative care for infants. Optimal palliative care should encompass a collaborative and coordinated approach between the primary healthcare teams and specialist palliative care services and prioritisation of palliative care education for nurses and physicians involved in providing palliative care to infants.

Keywords: Chronic conditions; Communication; Education and training; End of life care; Paediatrics; Supportive care.