Digital lifelines, data landmines: digital mental health tools for regional and urban families in an age of surveillance

BackgroundDepression, anxiety and behavioural disorders are among the leading causes of illness and disability for young people (aged 16–24 years), with suicide the third leading cause of death for individuals aged 15–29 years. For many young people, parents and caregivers play a central role in initiating help seeking, a dynamic shaped by developmental factors, cultural norms, and systemic barriers to accessing professional services, with most adolescents expressing a preference to rely on parental support rather than engage with mental health professionals. Additional barriers for accessing mental health services can include being too far away from clinicians, stigma, and low mental health literacy. Digital mental health (DMH) tools offer the potential to improve mental health service provision for young people and their parents. However, it is important to consider how the data collected from DMH tools is stored, shared or re-used, particularly given the existing biases in the mental health system and the possible impact this could have on a digitally engaged young person in the future.ObjectiveWe aimed to understand the barriers to mental health service access for parents and young people living in urban and regional locations in Australia, and how they value DMH data and whom they would share it with. We then compared their experiences to explore any differences and similarities in their understanding of DMH tool development and the possible benefits and burdens of the data that is collected when engaging with these tools. The study was part of a larger body of work that contributed to the design of a national mental health and wellbeing web-based “check-in” in Australia.MethodsWe ran a series of user-centred workshops (urban young people, n = 10, urban parents, n = 7, regional young people, n = 6, and regional parents, n = 8, total n = 31) that explored the perspectives of regional and metropolitan diverse parents and young people in Australia about engaging with DMH tools. We used a semi-structured activity guide to learn about participant perspectives on data security, access sharing custodianship, and potential data-reuse, as well as design preferences for future DMH tools.ResultsThe study found that attitudes toward mental health and how it is discussed can vary, with mental health disclosures depending on the family context and systemic societal influences. Participants were concerned about data privacy and tended to keep their online persona separate or deidentified. Lastly, our study found that young people want a tool that is centralised with their caregivers and service providers while parents wanted a tool that is personalised, targeted, and includes resources on parenting and psycho-education on mental health and neurodiversity.ConclusionsOur findings revealed that particpants’ social identities were associated with their likelihood of enacting help seeking behaviours. To overcome structural and systemic barriers such as stigma and discrimination, we suggest that DMH tools incorporate pseudonymous or user-controlled personas that are deidentified and confidential to increase safe sharing and trust. We recommend the use of a digital integrated support network that could allow young people and their caregivers, teachers, clinicians and mental health professionals to access mental health support.