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Arlington, VA — The National Alliance on Mental Illness (NAMI) today announces the original research report, “The Needs and Experiences of Users of Digital Navigation for Mental Health Treatment and Supportive Services,” published in the Journal of Medical Internet Research (JMIR) Mental Health. The study aims to quantify the experiences and user satisfaction of people living with mental illness and their caregivers with available digital navigation tools.
NAMI conducted a national survey from April 9 to May 21, 2020 and received nearly 500 responses providing feedback about online resource search tools for mental health services. The respondents included individuals with a mental health condition as well as their family members and support networks. The survey found two-thirds (67.4%) of respondents seeking mental health treatment or support services have used technology in their search — from a Helpline call-in number to mobile apps and crowd-sourced resource websites. A vast majority of respondents (80%) are dissatisfied with the available online navigation tools to find mental health treatment or support.
“This data provides valuable insights and a starting point, since person-centered research is still relatively rare,” said Dr. Ken Duckworth, NAMI’s chief medical officer. “The survey aim was to provide user perspectives for both researchers and app developers to improve the experience of people in need searching for appropriate mental health treatment and support. We are hopeful that these research findings will help inform improvements and spur additional research.”
The study provides a unique perspective on a common issue. Close to half of respondents (47%) reported that navigation tools have out-of-date and inaccurate information and 42% reported missing/inadequate information. The study aimed to identify what people who are currently seeking mental health treatment and supportive services need and how to improve the process for finding accurate and reliable information. For the purposes of the report, support services include social worker/community resource officer, housing aid, legal aid, and financial aid.
Caregiver respondents — those searching for treatment or support on behalf of another person — were even more likely to report dissatisfaction with available navigation tools (84%). This may be because they need more specific or intensive services. The report also found that more caregivers (58%) said they have searched for both treatment and support services compared to only 44% of respondents who were searching on behalf of themselves.
The survey results suggest that issues with data availability and accuracy in available navigation tools remains a major barrier for locating timely and appropriate mental health treatment and supportive services. This is particularly true among individuals seeking care on behalf of a family member or loved one. NAMI has confidence that improving the accuracy and user experience of mental health navigation tools could have a major positive impact on effectively connecting more people to treatment and support services before they reach a crisis.
In 2019, NAMI received funding from the Marriott Daughter's Foundation to support research on the user experience for finding mental health services. The paper based on the survey results is published in the Journal of Medical Internet Research (JMIR) Mental Health.
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