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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.
- Chronic conditions
- Communication
- Education and training
- End of life care
- Paediatrics
- Supportive care
Data availability statement
Data sharing not applicable as no datasets generated and/or analysed for this study.
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Data availability statement
Data sharing not applicable as no datasets generated and/or analysed for this study.
Footnotes
Contributors RI is responsible for the overall content as guarantor, made substantial contributions to the study design, completed the formal search, analysis, interpretation of data, appraisal of the studies, synthesis of results, manuscript writing and approval of the final version to be published. FG and MOC provided supervision to RI and both made substantial contribution to the study design, analysis, interpretation of data, appraisal of studies, synthesis of results, reviewing and editing of the manuscript, and approval of the final version to be published.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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