Exploring a child's developmental diagnosis: an interpretive description of parents' experiences in northern British Columbia

Background: 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 perceive as influencing their comprehension during the final diagnostic meeting have not been well identified. Method: As part of a qualitative study using interpretive description, 17 parents were interviewed on the basis of their having been referred to, and for having received a child’s developmental diagnosis from a Complex Developmental Behavioural multidisciplinary team located in northern British Columbia. Semi-structured 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. The interviews were recorded and transcribed. Data analysis was informed by Braun and Clarke’s six phases of thematic analysis. Results: Three overarching themes with twelve subthemes emerged from parents’ reported experiences of receiving their child’s developmental diagnosis. The three overarching themes and twelve subthemes included (a) clinical encounter (including the subthemes structural considerations, professional diversity and new insights, questions regarding the assessment process, validation, and expectations); (b) the manner of the delivery of the diagnosis (impact—emotional and impact on parenting practices, professionalism, professional language, and quantity of information); (c) Where do we go from here? (post disclosure, the final evaluation report, and recommendations). The parents’ accounts established and clarified the positive and negative parental determinants that aided or challenged their ability to understand their child’s developmental diagnosis and identified the influence this had when it came to implementing the clinical recommendations. ...