Lactation after infant death: an analysis of Australian healthcare agencies’ online health information

The “Lactation After Infant Death (AID) Framework”: A Guide for Online Health Information Provision About Lactation After Stillbirth and Infant Death

“…It offers an evidenced-based set of 25 information criteria cohered into seven categories (see Table 2) that guide the provision of much needed OHI to assist bereaved parents with lactation care, management, and decision making. In developing the Framework, researchers have considered and addressed some of the gaps and inconsistencies evident in the extant literature, and have offered guidance on how health organizations can, through the use of OHI, work towards redefining dominant discourses (Sweeney et al, 2020). Above all, our aim for the Framework is to promote an evidenced-based, transparent, and sensitive approach to OHI and support, ensuring that bereaved families are presented with comprehensive information that enables them to make informed choices about the full spectrum of lactation management options.…”

“…Whilst our Framework deals solely with the subject of lactation after infant death, health organizations should also be mindful that people may experience lactation after loss as a result of varied circumstances including abortion, child protection removal, surrogacy, or adoption (Cole, 2012). People in these circumstances may also be searching for information about lactation management, but some of their choices around suppression, expression, or donation may be constrained due to circumstances out of their control (Sweeney et al, 2020). Other equity issues, including the current lack of availability of human milk banks, must also be considered to ensure people are informed of the limitations of particular options applicable to their unique contexts and circumstances.…”

“…Provides links to other relevant websites or resources 2. Advises seeking advice of relevant healthcare professionals assist bereaved families' grieving (Sweeney et al, 2020). The omission of variable responses to lactation and human milk after loss is concerning, as it potentially reinforces the presumption that a bereaved parent should or would want nothing to do with their milk (Welborn, 2012b).…”

“…Information about breast changes commonly associated with milk production are often minimally presented within the context of other physiological changes that can result from miscarriage or stillbirth (Sweeney et al, 2020). As a result, many parents who have miscarried or given birth to a stillborn infant can be surprised, unprepared, and distressed when they experience breast sensitivity, engorgement, leakage of milk, discomfort, and pain (McGuinness et al, 2014;Welborn, 2012b).…”

“…To date, there has been little exploration or consideration of the OHI available to bereaved parents about lactation after infant death. To address this gap, a study was conducted in 2019 to review the lactation information presented on the websites of 21 targeted Australian health organizations (Sweeney et al, 2020). To evaluate website content, the research team devised an evidenced-based tool that succinctly incorporates information required by bereaved parents to promote effective management of, and informed decision-making about, lactation after infant death.…”