Using a rigorous meta-analysis and scoping review, Rennie and her colleagues combed through thousands of records, ultimately analysing 15 studies involving 593 participants published between 2000 and 2022.

The picture that emerged was striking in its uniformity. Caregivers in this body of research were typically white, middle-aged, partnered women with at least a high-school education, living in the United States. Adoptive parents made up the largest group, accounting for over 35% of caregivers studied. Birth parents came second, while foster parents and extended family members – such as grandparents and other relatives – trailed significantly behind.

The reality is, this profile bears little resemblance to the caregiving landscape in real clinical settings. In Manitoba, Canada, foster parents are actually the most common type of carer seen at diagnostic clinics, yet they represent just 11% of participants across the studies reviewed. Extended family members are similarly scarce in the research despite being the second most common caregiver type in clinical databases.

Rennie and her team also found that the children in these studies were overwhelmingly school-aged and had a formal diagnosis – meaning that adolescents, and children with prenatal alcohol exposure who haven’t yet been diagnosed or do not meet criteria for Fetal Alcohol Spectrum Disorder, are largely invisible in the literature. Male caregivers, non-white caregivers, single parents, and those with lower levels of education were also underrepresented.

Why does this matter? Because research shapes services. If support programmes and interventions are built on evidence drawn from a narrow slice of caregiving experience, they risk missing the unique needs of other family types. A grandparent who is caring for a child in care may face very different challenges than a financially secure partnered adoptive parent.

Rennie’s work is a call to action for researchers to make studies more inclusive through patient engagement, community partnerships, and thoughtful recruitment strategies. Understanding the full range of families affected by prenatal alcohol exposure is essential for improving care.