Aboriginal and Torres Strait Islander young people possess many strengths that stem from an ancient and resilient culture [1]. However, they also experience negative influences on well-being, mental illness, and suicide at higher rates than their non-Indigenous counterparts [2,3]. Help-seeking is impeded by stigma, shame, differences in language and culture, geographical isolation, and cost [4-7]. Mental health services that integrate Aboriginal and Torres Strait Islander people’s holistic health worldviews are recommended [8] but remain limited [4]. Culturally responsive technological innovations offer the potential to bridge mental health service gaps and address increasing demand [9-12].

Digital mental health (dMH) resources include “mental health, suicide prevention, and alcohol and other drugs services delivered via a digital platform” [13]. These can be stand-alone, clinician-supported, or used alongside face-to-face services [13]. Evidence supporting the acceptability and effectiveness of dMH solutions for Aboriginal and Torres Strait Islander young people is emerging [9,14-17]. Nevertheless, culturally adapted dMH resources remain limited [18,19]. End user involvement in the design of dMH interventions is recommended [20,21] and assists in valuing Aboriginal and Torres Strait Islander expertise [11] and decolonizing research processes [22,23].

Participatory design is often used in dMH development to engage users. It is a multistage process (defining the problem, identifying solutions, and generating and evaluating prototypes), with end user involvement throughout [21,24,25]. Research tools can include brainstorming, storyboarding, scenarios, prototyping, role plays, 2D sketching, group discussion, and user journeys [24,26]. Participatory design upskills and engages end users in experiential action-based activities with shared informed decision-making throughout [21,27]. Integration of best practice evidence and expert advice [21,26], visibility of outcomes [28,29], adequate time and resourcing [30], and a flexible iterative approach [30] are recommended to ensure success.

Although considered best practice, several challenges exist in undertaking participatory design. Tensions in preferences among designers; end users; and therapy and pedagogy experts, whose input is vital in designing resources that are appealing, usable, and address therapeutic goals, can prove challenging [31,32]. In addition, differences in user preferences based on age, gender, video game familiarity, and mental health need often arise [19,33-35]. Strategies to address these predictable tensions between and within stakeholder groups and manage selection bias include the following: defining roles, upskilling participants, developing a positive team approach, and supporting meaningful engagement [30,36,37]. Such strategies value end user input and help overcome power differentials [19,33-35,38]. In addition, co-design in cross-cultural contexts requires specific engagement strategies that embrace language and worldview differences and empower Indigenous young people throughout [39,40]. In summary, successful participatory design characteristics include the following:

Although recommended [24,26], in-depth reporting of processes used throughout the participatory design of dMH tools remains scarce [41], with some notable exceptions [36,42]. This omission inhibits the development of participatory design as a sound methodological approach and limits the understanding of how and if participatory design increases effectiveness, reach, adoption, and implementation of dMH resources [33,43,44].

The Aboriginal and Islander Mental health initiative (AIMhi) program of research develops, tests, and implements dMH resources for Aboriginal and Torres Strait Islander people [45,46]. Resources such as the Stay Strong Plan, a culturally adapted low-intensity cognitive behavioral therapy (CBT) intervention (available in digital and paper-based formats) have demonstrated effectiveness in reducing psychological distress and substance misuse among adults [16,47]. Developed and implemented over a decade within the Greater Darwin and Tiwi Island regions, the initiative is recognized and trusted within the community. Community feedback, suggesting changes to appeal to young people [9,10], led to the commencement of a youth-focused program of research (Aboriginal and Islander Mental Health Initiative for Youth [AIMhi-Y]). Phase 1, reported elsewhere [48], aimed to understand Aboriginal and Torres Strait Islander young people’s lived experience of mental health and well-being, views on dMH resources, and design and content preferences. Preferred features included a smartphone-based app that incorporates strengths-based mental health information presented through relatable storytelling and a fun, appealing, easy-to-use interface, which encouraged app progression [48]. Phase 1 resulted in the first 2D storyboard, which was used as a basis for this second design phase.

Using a participatory design approach, this study (phase 2) aims to iteratively enhance the AIMhi-Y app storyboard and finalize the first release of the AIMhi-Y app. This was done through collaboration with Aboriginal and Torres Strait Islander young people, service providers, integration of evidence and best practice recommendations, and iterative usability testing with the app developer. In this paper, we provide an in-depth report of our findings and experiences in developing the AIMhi-Y app.

This 2-year qualitative participatory design project conducted youth co-design activities (workshops and meetings), service provider interviews, a narrative synthesis of the literature, and app developer meetings. Several activities occurred concurrently as shown in Figure 1.

Purposive sampling was used to recruit young people and service providers with experience in working with young people across 3 sites (2 schools and 1 residential drug rehabilitation facility). All 3 sites that engaged in phase 1 [48] continued their engagement in phase 2. Youth participants invited to the co-design workshops were nominated by the teaching or support staff at their site. Inclusion criteria were as follows: Aboriginal or Torres Strait Islander descent, aged 8-18 years, and willing to talk in a group setting in English (at urban and remote sites) or Tiwi language (at the remote site). Service providers were key contact persons at each site and their engagement with the project ranged from 6 months to 2 years.

After completing the co-design workshops at the school and residential rehabilitation facility, a separate group of young people was recruited to form an Indigenous youth reference group (IYRG). This smaller group provided prompt feedback throughout the app development stage. Recruitment occurred via email and social media advertising, disseminated through project networks. Individuals identifying as Aboriginal or Torres Strait Islander, aged 15-25 years, and willing to attend meetings via videoconference (owing to the COVID-19 social distancing regulations) were recruited to the IYRG. Participants involved in the phase 1 or phase 2 co-design workshops were prioritized throughout recruitment, aiming for diverse age and gender representation.

Informed oral consent was obtained (face-to-face or via phone) from all participants and from guardians of those aged <16 years before participation. A pictorial consent flip chart and participant information handouts were used to assist communication. Interpreters were available for those who spoke a language other than English at home. The first author (JP) led the project, supervised by 5 senior researchers with clinical and dMH expertise. In addition, guidance from 4 Indigenous researchers (n=2, 50% youth and n=2, 50% women) played a vital role in establishing rapport, developing and refining data collection activities, and interpreting during face-to-face discussions. Research team members were trained in distress management and suicide awareness. Site-specific risk management processes were agreed upon by each organization before commencement. They included the provision of immediate safety measures by researchers, notification of senior research team members, and follow-up and referral to treatment services provided by the nominated site contact person.

An existing expert reference group (established in phase 1) included 12 service providers and researchers with relevant expertise from mental health, drug and alcohol, child protection, and education sectors (n=3, 25% men and n=5, 42% Aboriginal). The expert reference group met or were contacted via email biyearly to advise on research processes, app design, and content [48].

Ethical approval was obtained from Menzies School of Health Research Human Research Ethics Committee (HREC 2017-2991), including the Indigenous subcommittee and the Northern Territory Department of Education Research Ethics Committee (reference number: 13417).

The first author (JP) transcribed all the sections of the co-design workshop recordings that were relevant to the design process. The first and second authors independently thematically coded data from workshops, meetings, and interviews by combining an inductive process, generating codes from the data (MS) [51], with deductive analysis, based on the app preferences identified in phase 1 (JP) [52]. Following consensus, further discussions were conducted with the full research team. Scientific literature was concurrently synthesized into table format by the first author (JP) and thematically analyzed according to the recommended dMH attributes. The themes emerging from youth co-design workshops, meetings, and service provider interviews were then integrated into the themes identified through the literature review. Findings from all analyses informed the design and development of the AIMhi-Y app (version 1.0). The dMH safety standards and youth preferences were prioritized throughout development. Analysis occurred before and concurrent to meetings between the app developer and the research team to translate design preferences into prototypes. Demographic data were analyzed for descriptive statistics to describe the sample.

The product developed is a smartphone-based AIMhi-Y app (version 1.0) that integrates culturally adapted low-intensity CBT, psychoeducation, and mindfulness-based activities into a universal early intervention (Figure 5). The app aims to increase mental health literacy, self-management, and help-seeking for Aboriginal and Torres Strait Islander young people. Users assist fictional characters through a series of quest levels, aiming to become familiar with the content before beginning their own quest. The integrated AIMhi Stay Strong therapy follows a 4-step process: identifying people who keep them strong, strengths, worries, and supported goal-setting, which is interspersed with psychoeducational videos [63]. Activities and information target both anxiety and low mood. A summary page collates user or character information and presents their progress. Minigames promote relaxation; encourage real-world activities; and provide fun, engaging, and immersive sensory experiences. An example is a game in which users listen to an immersive soundtrack and are asked to identify familiar animal sounds by selecting related images. Storytelling aims to develop relationships and facilitate skill development in a safe, nonthreatening environment. The app aims to be easy to use with intuitive designs and nonclinical youth-friendly language. Aboriginal language words relevant to specific characters are integrated throughout. Vibrant colors and design elements reflect the natural landscapes of different Northern Territory (Australia) regions. Help contacts and links for further information are available throughout. A deidentified database captures app use and user interaction with app features.

This second phase participatory design project integrated Aboriginal and Torres Strait Islander young people’s and service providers’ preferences with recommendations from the scientific literature to develop the AIMhi-Y app (version 1.0). Young people expressed diverse and strong desires for app features, which were generally well aligned with findings in the scientific literature. Throughout this project, young people have been involved in an iterative design, development, and review process. Several challenges and key learnings have been noted. We reflect on how our processes align with the attributes of successful participatory design.

This project engaged a large, diverse group of young people with varied demographic, cultural, and linguistic backgrounds, many of whom may not usually be involved in co-design processes [38,106]. The planning, reflection, and refinement of culturally responsive co-design activities with the input of 4 Indigenous researchers led to increased engagement and acceptability of our processes. However, maintaining young people’s participation for 2 years during adolescence, where social, emotional, and vocational needs are changing, was difficult: a challenge highlighted by others [106,107]. New participants were recruited throughout the process and they shared new ideas, suggestions, and opinions frequently. Our findings align with other studies that have identified differing preferences based on age, gender, and mental health status [88], suggesting that dMH tools need to be designed and tailored with specific target audiences in mind [33,48,68,108].

The staggered timing of diverse groups across multiple sites and the iterative nature of participatory design challenged our democratic processes: difficulties others have identified [20,36,38]. Each co-design workshop was iteratively modified in response to previous findings, limiting the use of voting or consensus methods [38,37]. Therefore, informed by previous findings, literature, and safety standards, researchers assumed a decision-making role, which shifted power differentials and impacted the extent of young people’s influence in the co-design process. The sustained and regular inclusion of 2 youth and 2 senior Indigenous researchers and an experienced research team optimized youth, clinician, and Aboriginal and Torres Strait Islander influence in decision-making. The inclusion of the IYRG throughout development improved the decision-making capacity of young people in some domains. However, the information and decisions presented to the group were prioritized by the research team to keep within time frame constraints. Systematically taking findings and decisions from one group to the other and back again (eg, through decision logs) might have improved the transparency of our decision-making.

Furthermore, although young people provided many innovative and creative suggestions, budget and timeline restrictions limited what was incorporated into this first prototype app design. This is consistent with the challenges highlighted by others in facilitating a process allowing participants to be creative and innovative while providing rules and guidelines to keep work within the project scope and budget [109]. Finally, determining the degree to which upskilling of participants occurred in a culturally and linguistically diverse, iterative situation, where knowledge from all stakeholders remained both tacit and latent, presented a significant challenge [24]. In addition, the knowledge presented, the responses sought, and the interpretation of feedback by the research team were inevitably influenced by the researchers’ experience, availability, paradigms, and worldviews [110].

Overall, the integration of findings into the app prototype proved complex, requiring consideration of young people’s and service providers’ preferences, recommendations from the literature, and budget. Future iterations will be informed by a feasibility study (commenced in August 2020) and might include additional activities; greater accessibility across platforms and devices; options for customization; self-monitoring; full integration of Aboriginal languages; and additional characters representing diverse ages, genders, language groups, and geographic areas facing differing age-appropriate strengths and challenges. Key learnings throughout this project include the importance of understanding and upskilling all those involved in the co-design project on previous work undertaken, the practical limitations, findings from previous research, and safety recommendations early in the co-design process. Although seeking diverse opinions undoubtedly strengthened our approach, a detailed plan of how to integrate the information across stakeholder groups would have aided our process. Identifying stakeholder roles, opportunities for input, responsibilities, influence, and decision-making strategies across app characteristic domains may have allowed more decision-making opportunities to be presented to young people.

All of the small number of service providers interviewed had existing relationships and interest in the project, likely resulting in favorable comments. However, their involvement ensured the consideration of context and supported seeding ideas for further exploration and testing, thereby strengthening rather than detracting from the process. Furthermore, young people’s engagement in this project was influenced by organizational, cultural, and linguistic contexts; group dynamics; facilitator experience; and availability. The difficulties in engaging an interpreter at the drug rehabilitation site undoubtedly impacted young people’s engagement. The IYRG members were reimbursed for their participation, which may have influenced their comments. However, others have suggested that reimbursement might aid participation by promoting a sense of pride and responsibility [38]. Although sustained engagement facilitated trust and rapport over time, the transient nature of this population group proved challenging as new relationships needed to be established. Finally, the research team took a lead role in decision-making and prioritization of app features owing to resource limitations, impacting the extent of young people’s influence in the co-design process.

By using a participatory design approach, we engaged a large and diverse group of young people to develop a new culturally informed early intervention mental health treatment app. We identified challenges in reaching consensus, upskilling participants, and allowing equal representation of views in a genuinely participatory process. By describing our processes, we aim to provide transparency in reporting of participatory design approaches. Although the process proved challenging, we successfully created a new app integrating youth preferences and best practice recommendations within a limited time frame and budget. A current feasibility study is underway to evaluate the usability, feasibility, and appropriateness of the AIMhi-Y app and its potential for improving the well-being of Aboriginal and Torres Strait Islander young people.