Caregivers with Learning Differences: A Scoping Review and Stakeholder-Engaged Process to Identify Screening Tools for Maternal and Early Childhood Home Visiting Programs

Evidence-based maternal and early childhood home visiting (EBHV) may support health and well-being among families headed by a caregiver with an intellectual disability or other learning difference. Little is known about tools EBHV staff can use to identify caregivers with learning differences and inform service delivery strategies. Investigators used a two-step stakeholder-engaged approach to identify screening tools that are feasible, acceptable, and useful in the EBHV context. In the first step, authors conducted a scoping review to identify validated screening tools. Data describing the studies and tools were extracted and synthesized. In the second step, an established Stakeholder Advisory Group gave two rounds of feedback on the feasibility, acceptability, and usefulness of each tool for the EBHV context. Most identified tools were verbal or written questionnaires developed outside the United States. Only one tool was developed for parents or other caregivers. Overall, tools had limited psychometric evidence. Stakeholders expressed concerns about potentially stigmatizing language of some items within tools, suggesting that adaptations may be needed for tools to be acceptable in the EBHV context. Investigators concluded that there are few valid and reliable screening tools to identify learning differences that are brief and can be used by paraprofessionals with no prior expertise. Additional research is needed to further validate, adapt, or develop a tool that is feasible, acceptable, and useful for the EBHV context.