Co-design of digital mental health support for autistic youth with co-occurring anxiety : a qualitative inquiry.
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Autism is a neurodevelopmental condition characterised by differences in social communication and behaviour. Estimates suggest that 1-2% of taiohi (youth) in Aotearoa New Zealand are Autistic. Autistic taiohi are at disproportionately high risk of experiencing mental health challenges, with anxiety being one of the most common co-occurring diagnoses. This has a significant effect on the daily functioning, social interactions, and overall quality of life of Autistic people. Unfortunately, the quality and accessibility of anxiety support services are suboptimal. Tāngata whaitakiwātanga (Autistic individuals) face many barriers to accessing mental health support and supports that are available have primarily been developed for non-Autistic youth. As a result, the needs of Autistic taiohi are not being met. Evidence shows that anxiety in Autistic taiohi can be effectively managed and treated with the right approach. Co-designed face-to-face support models, which involve input from Autistic individuals and their families, have demonstrated positive outcomes in managing anxiety. Additionally, dMH supports can provide an accessible and effective model for delivering these interventions by offering flexible and inclusive options. Digital supports refer to independently accessed supports that are delivered via technology (e.g., mobile apps, internet- and computer-based websites, or virtual reality). These supports include both self-directed and therapist-assisted supports.
The current research sheds light on the preferences of anxious Autistic taiohi for dMH solutions, highlighting both desired and less favoured features. It underscores the importance of integrating co-design in developing dMH supports that effectively address the individual needs of Autistic taiohi in Aotearoa New Zealand, including accessibility, personalisation, and cultural relevance. The inclusion of culturally relevant content is essential for ethnic minorities, particularly Māori, to ensure that support is culturally sensitive and promotes self-identity. Findings highlight the need to integrate holistic approaches, such as Te Whare Tapa Whā, into dMH tools to address multiple dimensions of well-being among both Māori and non-Māori taiohi. Enhancing personalisation and semi-structured interviews designed to explore the perceived benefits and challenges of dMH and the design preferences for an anxiety-specific dMH tool. Data were analysed using reflexive thematic analysis (RTA). Tāngata whaitakiwātanga were involved at each phase of the research, including the design of research aims and interview questions, recruitment, and the interpretation of findings. This collaboration ensured that this thesis was representative of the perspectives of tāngata whaitakiwātanga and made sure their needs and preferences were explored in a non-pathologizing way.
Three overarching themes were identified from the data: (Soke et al.) perceived benefits of dMH, (Soke et al.) perceived challenged of dMH, and (3) design preferences. Key perceived benefits included increased access to mental health support by overcoming barriers to accessing in-person support and an increase in self-understanding. Perceived challenges identified were associated with a lack of humanisation in dMH and the skill barriers experienced by potential end-users. Finally, important design preferences included an inclusive approach that integrated cultural considerations, app reminders and notifications, gamification, therapeutic content, features for connection, and crisis response capabilities.
The current research sheds light on the preferences of anxious Autistic taiohi for dMH solutions, highlighting both desired and less favoured features. It underscores the importance of integrating co-design in developing dMH supports that effectively address the individual needs of Autistic taiohi in Aotearoa New Zealand, including accessibility, personalisation, and cultural relevance. The inclusion of culturally relevant content is essential for ethnic minorities, particularly Māori, to ensure that support is culturally sensitive and promotes self-identity. Findings highlight the need to integrate holistic approaches, such as Te Whare Tapa Whā, into dMH tools to address multiple dimensions of well-being among both Māori and non-Māori taiohi. Enhancing personalisation and accessibility in dMH tools is crucial for meeting individual needs, and can be achieved through customisable avatars, various communication formats (e.g, written/text, audio, voice memo), crisis management, progress tracking, and daily check-ins. Additionally, incorporating peer support into dMH may promote connections among Autistic taiohi who share similar experiences, which could benefit their wellbeing. The study also emphasizes the integration of gamified elements to enhance engagement and motivation, including virtual worlds with missions, reward systems, and mini games. Moreover, the research suggests that dMH should complement rather than replace traditional mental health services, which suggestions that a hybrid support model may be most beneficial.
Overall, findings reiterate the need to improve access to appropriate and relevant anxiety supports that do not impose neurotypical expectations. Future research should continue to engage Autistic communities in developing and refining dMH interventions, exploring elements like gamification, crisis support, and cultural inclusion, and assessing their long-term effectiveness and user satisfaction.