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

Abstract

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 perceived as influencing their comprehension during the final diagnostic meeting have not been well identified. Method 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. Results 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). Conclusions 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.

The glue that keeps everybody together: Peer support in mothers of young children with special health care needs

“…Many parents of children with disabilities are introduced to the world of disability by medical professionals, who have their own jargon and scrutinize the bodies of children for abnormalities (Pearson et al, 2020). The juxtaposition of this experience of new parenthood with the expectation of a healthy pregnancy and birth can be stressful for parents and leave them fearful and without adequate resources, further putting them at risk for negative mental health sequelae (Minnes et al, 2015).…”