Maternal Trust and Vaccination Decisions for Children With Developmental Disabilities: A Qualitative Mixed-Method Study

In the U.S., about one in six children has a developmental disability, and 2-3% of children have an intellectual disability. Children with intellectual and/or developmental disabilities (IDD) have been excluded from vaccine trials, partly because of ethical and practical obstacles. As a result, no vaccine safety data specific to children with IDD have been published. Despite the WHO’s goal to vaccinate all children, immunization programs have not sufficiently addressed the needs of children with IDD, who show some of the lowest and most inconsistent childhood vaccination rates. This represents a small but significant epidemiological failure. This qualitatively-driven mixed methods project developed a substantive theory of vaccination for children with IDD within the context of evolving maternal trust. In longitudinal, unstructured interviews with mothers, trust emerged as a dominant concept. Next, Conceptual Scaffold Analysis as an analytic framework aided in coding dimensions of trust related to mothers’ decisions to vaccinate their child with IDD over time. Subsequently, we developed an interpretive theory explaining the rationale for mothers’ vaccine decisions—whether to accept, postpone, or reject—that encompassed trust in vaccination from both societal and interpersonal perspectives. Strategies are proposed to address trust issues surrounding the vaccination of children with IDD.