Insights

5 Strategies for Including Unheard Voices in Mental Health Research

Unheard Voices

Working in the mental health field, you likely know that more than half (1) of individuals with severe mental illnesses (and closer to 90% (2) of those with substance use disorders) receive no treatment at all. 

While access barriers such as affordability, transportation, and child care play a significant role, there are also many people with mental health conditions who do not feel comfortable seeking care or don’t know where to begin. User experience research can be a critical tool to help you understand why people may not be seeking or receiving treatment for the condition your product targets. 

But how do you conduct research that ensures the inclusion of all segments of the affected population, especially those hardest to reach? 

Unfortunately, due to time, resources, or other constraints, user research is often conducted with the most available candidates recruited from a market research panel. Individuals found in market research databases have been vetted to ensure they will show up on time and have access to communication tools like Zoom, a laptop, and high-speed internet. However, these individuals represent a small, curated (and more privileged) slice of your addressable market. 

This missed opportunity means that the findings from your research with easy-to-reach consumers only benefit those same easy-to-reach consumers. Ultimately, the underrepresented individuals who need your product/service the most end up less likely to use your product. 

When segments of people are harder to recruit for or don’t become part of the improvement cycle, their stories, vocabulary, and preferences are excluded from the process. In Design Justice, this process is described as the “spiral of exclusion” (3). 

Ironically, members of marginalized communities who have been systematically excluded from market research have the most unmet needs, and their experiences can teach us the most about where to improve. 

When your research and design processes are inclusive of people with the greatest needs, you inevitably improve the experience for everyone. If your organization is interested in engaging potential customers, you must integrate inclusive, context-sensitive, culturally congruent services - and the place to start is user research. 

Your research should be planned and conducted carefully to ensure it is not only effective, but also that it does not harm participants. To accomplish this, ideal research practices should be conducted in partnership with trained, ethically responsible researchers alongside social work practitioners with experience working in the space. 

At Mad*Pow, we thoughtfully design inclusive research studies and co-design sessions with our clients. We recruit a diverse panel of participants, synthesize and personify research findings, and implement the following strategies to develop inclusive tools and resources that the most inclusive audience will actually use:

  1. Design ethical studies with a flexible, inclusive approach
    • Consider ethical implications before launching the study.
    • Be transparent about the commercial goals of the study.
    • Don’t accidentally exaggerate the social good of the project to make it sound more benevolent than it is,
       
  2. Include underrepresented and misrepresented communities in recruitment
    • Recruit members of communities who have been systematically excluded from market research.
    • Partner with care organizations, community health centers, supportive housing sites, and drop-in centers.
    • Connect with potential participants virtually and in real-world patient communities.
       
  3. Build a flexible interview format
    • ​​​​​​​Provide options to meet in person at a location familiar to them as an alternative to phone or video calls.
    • Anticipate and accommodate complex and chaotic life circumstances, expect cancellations and no-shows, and build time for make-up sessions.
    • Conduct interviews in the language most comfortable to participants.
       
  4. Ensure your researchers are trained to work with vulnerable populations
    • ​​​​​​​Anticipate that the interview may be a source of stress, social anxiety, and pressure to perform.
    • Recognize that SMI participants may be easily fatigued, so check in regularly to ensure comfort.
    • Tread carefully with sensitive subjects, and don't underestimate the burden of revisiting past trauma through the interview. 
       
  5. Design with, not for
    • ​​​​​​​Consider a collaborative approach, like co-design, that brings people into the conversation and makes them a part of the process.
    • Make sure the research is iterative, not “one and done” - this isn’t a silver bullet.
    • ​​​​​​​Understand what already exists and is working, rather than recreating the wheel or assuming you can do it better.

Modifying your approach to ensure you are speaking to all of your potential consumers will help you enhance your mental health product or service offerings to be practical, relevant, and inclusive for your entire target population. Partnering with Mad*Pow will ensure that your service design follows a trajectory of increased usefulness, relevance, and usability for all. 

Schedule a half-hour call with Mad*Pow to learn more.

 

  1.  Dixon, L. B., Holoshitz, Y., & Nossel, I. (2016). Treatment engagement of individuals experiencing mental illness: review and update. World Psychiatry, 15(1), 13-20.
  2.  Substance Abuse and Mental Health Services Administration. (2020). Key substance use and mental health indicators in the United States: Results from the 2019 National Survey on Drug Use and Health (HHS Publication No. PEP20-07-01-001, NSDUH Series H-55). Rockville, MD: Center for Behavioral Health Statistics and Quality, Substance Abuse and Mental Health Services Administration. Retrieved from https://www.samhsa.gov/data/
  3. [Costanza-Chock, 2020] Costanza-Chock, Sasha. Design justice: Community-led practices to build the worlds we need. The MIT Press, 2020.
Contributed by
Name
Greg Hamilton
Job Title
Managing Director, Experience Research