JMIR Publications

ABSTRACT

Background:

Adolescent and young adult cancer survivors (AYACS) are more likely to experience elevated depressive symptoms when compared to both older survivors and healthy age-matched peers. Despite the elevated risk of depressive symptoms in AYACS and the existence of evidence-based interventions (EBIs) to address depression, it is unclear whether AYACS can access support services. Digital tools are a potential solution to overcoming barriers to AYACS’ unmet needs for psychosocial support, but they have not been tailored to the needs and preferences of this unique population.

Objective:

This study engaged AYACS and their providers in the concept generation and ideation step of the user-centered design process through virtual co-design workshops. The goal of these workshops was to generate concepts and ideas for a digital depression self-management tool tailored to AYACS.

Methods:

We conducted five co-design workshops - four with AYACS and one with providers who serve them. During workshops participants were asked to provide feedback on an existing digital mindfulness course using an “I like, I wish, I wonder” framework. Then, participants were asked “How might we…” questions focused on brainstorming ideas for how the digital tool might work. Participants brainstormed responses independently then worked as a group to categorize and expand on their ideas. Co-design workshops were auto-transcribed by the WebEx software. Transcripts underwent thematic analysis with additional context provided by the products created during the workshop.

Results:

Eight AYACS (ages 15 – 37) and 4 providers (2 oncologists and 2 social workers) participated in co-design workshops. We identified 6 themes: Barriers to Engagement, Desired Content, Preferences for Content Delivery, Preferences for Interface, Features, and Aspects to Avoid. Each theme had between 2 and 7 sub-themes that the study team relied upon when making design decisions for the prototype.

Conclusions:

Co-design workshops provided critical insights that informed the development of a prototype of a digital depression-self management tool tailored to AYACS. Key takeaways workshops that were integrated into prototype design include (1) using stories from other AYACS to demonstrate concepts; (2) delivering content in brief lessons; and (3) using encouraging notifications, organizational tools, and reward systems to keep AYACS engaged with the tool. Some of the themes identified in this study (e.g., Desired Content, Features) are consistent with known strategies for promoting user engagement and co-design work in other groups of cancer survivors. However, this study extended previous research by identifying strategies for tailoring that are uniquely relevant to AYACS, such as ensuring that the content is delivered in brief sessions to overcome the time constraints AYACS experience, providing opportunities for private expression, and maintaining an encouraging tone throughout the tool. This data was used to inform the development of a prototype of a digital depression self-management tool tailored to AYACS.