Perinatal palliative care in low- and middle-income countries: a scoping review

2.4 million neonatal deaths and 2.6 million stillbirths occur each year. Over 98% of perinatal loss occurs in low- and middle-income countries. Despite the global burden of perinatal loss, access to relevant perinatal palliative and psychosocial care is poor and understudied.

In this review, we synthesize perinatal palliative care literature from low- and middle-income countries. We focus on the clinical practice of perinatal palliative care and educational models being used in resource-constrained settings. We used a systematic scoping review approach, following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) checklist. The PubMed, Scopus, Embase, Cochrane, CINAHL, and Global Health (embsco) databases were searched. There were no date or language restrictions placed during the search. Study selection was conducted using Covidence to facilitate a staged review process.

A total of 10,145 articles remained after removing duplicate studies. Following the three-staged review, 81 studies were included in our analysis. The largest portion of published perinatal palliative care literature focused on clinical care (n=44). Nine studies focused on provider training in perinatal palliative care and 28 studies addressed parent or family experience. Of the included studies, 84.9% had a first or last author from a low- or middle-income country and 91.8% included an author from the country of focus in the manuscript. The findings presented in this scoping review reveal that healthcare workers and families desire improved guidelines about perinatal palliative care that reflect the realities of local culture and resources. Additionally, providers need enhanced training in perinatal palliative care techniques and management approaches that can be applied in a range of clinical settings.

Global perinatal palliative care strategies must encompass compassionate communication with families, psychosocial support after stillbirth or neonatal death, and emotional and mental health support for healthcare workers who provide perinatal palliative care.