Parental perspective: Factors that played a role in facilitating or impeding the parents' understanding of their child's developmental diagnostic assessment

Abstract

Full parental understanding of a child's diagnosis of a developmental disability is critical to be able to ensure the best health outcome for their child. Yet factors that parents perceived as influencing their comprehension during the final diagnostic meeting have not been well identified. This study used a qualitative interpretive description approach. Seventeen parents were interviewed who received a child's developmental diagnosis from one of the clinical multidisciplinary teams located in northern British Columbia. The interviews focused on the factors that played a role in facilitating or impeding the parents' understanding of their child's diagnosis, and on the identification of factors that influenced the way in which the child's clinical recommendations were pursued. Two overarching themes with nine subthemes emerged from parents' reported experiences of receiving their child's developmental diagnosis. The themes and subthemes included (a) clinical encounter (including the subthemes structural considerations, professional diversity and new insights, questions regarding the assessment process, and validation) and (b) manner of the delivery of the diagnosis (emotional impact, impact on parenting practices, professionalism, professional language, and quantity of information). Parents' accounts established and clarified the positive and negative parental determinants that aided or challenged their ability to understand their child's developmental diagnosis during the final clinical interaction with the multidisciplinary team.