Parent Mental Models of Transition Related to Their Child’s Developmental Diagnosis

Previous research suggests that parents may experience higher levels of depression, stress, and uncertainty around the time when their child receives a diagnosis of a developmental disorder. However, there is mounting evidence that some parents experience positive transformation related to their child’s diagnosis. We used an exploratory mixed method design to elicit parents’ mental models related to their child’s developmental diagnosis. We analyzed parents’ responses to six open-ended online survey questions to gain insights about parents’ transition with respect to their child’s diagnosis. Our findings indicate that some parents’ mental models associated with their child’s developmental diagnosis change. We found that parents associate awareness of their child’s differences with feeling uncertain and wanting to search for information. Parents’ descriptions of adapting to a new state was associated with experiencing frustration and confusion with providers and other people outside of their immediate family. Parents’ expressed confidence and pride describing their experiences related to accepting their child’s diagnosis. Parents’ descriptions of acceptance often focused on greater understanding of their needs. Our results suggest that a three-stage model to describe parent transition is appropriate. Additionally, it appears that parent mental models related to their child’s developmental diagnosis evolve over time. Future studies should explore the ways in which gaining insight about parent mental models of transition may inform developing education and other supports for families.