Supporting mental health conversations among youth with neurodevelopmental disorders through digital storytelling: A co‐produced study

Abstract

Abstract Background Youth (aged 15–24 years) diagnosed with neurodevelopmental disorders (NDD) experience higher rates of co‐occurring mental health challenges and disparities in receiving timely care. A significant barrier to support is a lack of guidance for healthcare professionals (HCPs) on delivering conversations about co‐occurring mental health for youth with NDD. Limited guidance is amplified by a paucity of research which has included youths' perspectives on how to speak to them about co‐occurring mental health challenges. There is a need for research to include the voices of youth with NDD to ensure policies and practices reflect their lives, co‐occurring mental health needs and abilities. Methods The study was co‐produced with a youth and parent advisory council. Nine youth with NDD, aged 16–21 (M age = 18 years), created digital stories about their experiences with mental health support and how to foster conversations about co‐occurring mental health. The stories of six young men and three young women were analyzed thematically. Results Negative experiences with support included feeling misbelieved, dismissed, and the use of esoteric medical/scientific language among HCPs. These experiences deterred future support seeking. A compassionate approach centered on rapport, trust, involving family members and establishing a space of psychological safety were foundational to support conversations about co‐occurring mental health. Explaining mental health challenges in an accessible way, tailored to their needs and involving youth in their care plan was essential to enable youth to feel safe and able to share their vulnerabilities. Conclusion Encounters with HCPs can help, harm, and heal. Youth voiced the importance of HCPs playing a collective role in supporting mental health and shared approaches that were most supportive of their needs. A toolkit generated from digital stories to support conversations about mental health is offered. Digital storytelling can be a valuable and accessible methodology for youth with NDD with cathartic, methodological and empirical benefits.