Centering Lived Experience in Developing Digital Interventions for Suicide and Self-injurious Behaviors: User-Centered Design Approach

Abstract

Background: The prevalence of self-injurious thoughts and behaviors (SITB) signals a growing public health crisis. Despite a recognized need for improved and scalable interventions, the field of SITB intervention faces several challenges: existing interventions are often time and resource intensive, most individuals with SITB do not seek formal mental health care, and efficacious treatments are characterized by small effects. Combined, these challenges indicate a need for improved SITB interventions for individuals in formal treatment and those who are not treatment engaged but are at high risk of worsening mental health and future suicide attempts.

Objective: We present a methodological approach and set of techniques that may address these challenges by centering the lived experience of individuals with SITB in the process of developing needed services: user-centered design (UCD).

Methods: We highlight the value of UCD in the context of digital interventions for SITB by describing the UCD approach and explicating how it can be leveraged to include lived experience throughout the development and evaluation process. We provide a detailed case example highlighting 3 phases of the early development process that can be used to design an intervention that is engaging and meets end-user needs. In addition, we point to novel applications of UCD to complement new directions in SITB research.

Results: In this paper, we offer a 2-pronged approach to meet these challenges. First, in terms of addressing access to effective interventions, digital interventions hold promise to extend the reach of evidence-based treatments outside of brick-and-mortar health care settings. Second, to address challenges related to treatment targets and engagement, we propose involving individuals with lived experience in the design and research process.

Conclusions: UCD offers a well-developed and systematic process to center the unique needs, preferences, and perceived barriers of individuals with lived SITB experience in the development and evaluation of digital interventions.

Keywords: digital intervention; engagement; intervention; lived experience; mobile phone; nonsuicidal self-injury; suicide; technology-enabled services; user-centered design.