Lactation During Perinatal Bereavement From the Perspective of Families and Support Providers: A Scoping Review

Perinatal loss is a time of intense grief for affected parents. Due to lactation physiology, bereaved mothers still experience the onset of lactation and are left with milk but no child to feed.

To explore what is known about the lactation experiences of (1) mothers and (2) support providers, including healthcare workers, milk banks, and families, during periods of perinatal bereavement.

A scoping review, guided by Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, was undertaken using two database searches to identify existing research (n = 24 studies). The research team extracted data from studies and categorized results into four categories that were developed after reading full texts: (1) Producing Milk, (2) Support, (3) Stopping Lactation, and (4) Donating Milk. Due to the large amount of qualitative data, additional qualitative analysis was conducted to identify six prominent themes: (1) Hurting, (2) Lacking, (3) Valuing, (4) Succeeding, (5) Connecting, and (6) Redeeming.

Most of the included studies focused on mothers, and a limited number focused on support providers. Additionally, most studies were qualitative (19 of 24). Producing milk during bereavement was a way of connecting, while lactation support and stopping lactation were often characterized as lacking. Finally, donating milk was frequently perceived as redeeming. Across all categories, there were limited quantitative outcomes.

Bereaved lactation has predominantly been studied through qualitative research methods, with some common themes emerging. Quantitative research is needed to better understand the types and prevalence of lactation support provided during perinatal bereavement, as well as the donation patterns, barriers, and enablers of bereaved milk bank donors.