Delivering Diagnoses: Parents As Translators and Withholders of Children's Mental Health Diagnoses
A small body of research has explored children’s experiences with mental health treatment. There is very limited research evidence, however, on how children come to understand their diagnoses. While research has explored the linguistic strategies and general guidelines for explaining physical illness to children, there is a lack of research on how mental health diagnoses are delivered and explained to children and the effectiveness of these strategies.
This paper helps to fill this gap by examining the retrospective accounts of emerging adults who were diagnosed with mental health disorders in childhood to explore how their diagnoses were delivered and how they came to understand their diagnoses over time. Additionally, drawing on their own experiences, participants offer suggestions regarding the best ways to deliver diagnoses to children.
Methods:
Forty-two in-depth, semi-structured interviews were conducted with emerging adults (ages 18 to 22) who were diagnosed with attention deficit hyperactivity disorder (ADHD), depression, generalized anxiety disorder (GAD), and/or bipolar disorder in childhood. The sample is predominantly female (69% female; 31% male), White (81% White; 5% Asian, 5% Black/African American; 5% Hispanic/Latino; 5% Bi-racial), and middle/middle-upper class (84% had at least one parent with a college degree). Participants were recruited via posted fliers and an email sent through the office for students with disabilities at three colleges. Interviews elicited participants’ life history narratives, including how participants learned about their diagnoses and their views on how to best deliver diagnoses to children. Interviews were transcribed verbatim and coded thematically using HyperResearch qualitative software, guided by the principles of grounded theory and an inductive approach to qualitative analysis.
Findings:
Data analysis reveals that children were often informed of their diagnoses by their parents, rather than mental health professionals. Some participants even describe being asked to leave the room when mental health professionals delivered diagnoses to their parents. The data suggest that parents often act as translators of diagnoses, acting as the liaison between mental health professionals and their children. Participants note varying levels of understanding among their parents regarding children’s mental health. Findings suggest that parents’ knowledge about their child’s mental health disorder shapes how participants understand and experience their diagnoses in childhood.
Several participants report that their parents and mental health professionals withheld information about their diagnoses from them altogether. Findings indicate that this only exacerbated the stigma that they experienced. Participants suggest that adults should be open with children, sharing information and listening to children’s voices. They emphasize that children can comprehend more than is often expected.
Conclusion and Implications:
Findings highlight the importance of parents’ education surrounding children’s mental health, given their role in delivering and providing information about mental health diagnoses to their children. By providing support and education to parents as they learn about and share information about mental health diagnoses with their children, social workers can help children to better understand their diagnoses and reduce the stigma that they experience.