Technology is rapidly changing the world. People use the Internet at home and on their phones to do everything from gather information to perform everyday tasks. What isn’t well understood is how much people with serious mental illnesses use technology to cope with their symptoms and support their recovery. In a mental health care system with persistent funding cuts and a workforce shortage, technology may be an underappreciated tool. For example, I have had patients living with schizophrenia mark their next appointment in their phones, but my clinic didn’t connect to their phones to provide reminders or notification of changes. How many other missed opportunities are there in this new world?
When NAMI received a grant from the Drake Family Trust to study schizophrenia, we chose to investigate the current state of technology use among people with schizophrenia. In 2014, NAMI conducted the Health and Technology Study, the largest study to date to examine ownership and use of technology among individuals living with schizophrenia.
NAMI partnered with Harris Poll to prepare an online survey, which an institutional review board approved. The survey questions focused on access to technology, coping strategies and patterns of use. The survey was conducted online from Aug. 25 to Sept. 8, 2014, and included 457 respondents who self-identified as having schizophrenia or schizoaffective disorder. While the study gives insight about Internet users who self-identify as having schizophrenia or schizoaffective disorder, the study has some limitations. We don’t know how representative this sample is of the larger population, which is an area for further inquiry.
The results showed that people living with schizophrenia who responded to the survey use digital technology generally as much as the rest of the population. Respondents used digital technology to help them gather information, improve their capacity to manage symptoms and connect with others.
Access to Digital Devices: Most respondents (90%) owned more than one digital device such as a personal computer, tablet or smartphone. More than half (54%) had access to smartphones (compared to 64% of all Americans).
Managing Mental Illness: Many respondents used their devices to manage their mental illness in daily life in the following ways:
- To block auditory hallucinations with music or audio (42%)
- To find health information online (38%)
- To schedule reminders for appointments (37%) and for taking medication (28%)
- To look up transportation and maps (32%)
- To monitor symptoms (25%)
- To identify coping strategies (24%)
Personal Connections: Respondents used digital devices to connect with others, including supporting other people (26%) and developing relationships with other persons with schizophrenia (26%).
The survey findings were published in the Journal of Medical Internet Research in the article “Digital Technology Use Among Individuals with Schizophrenia: Results from a NAMI Survey” (registration is required to view). The authors were Katrina Gay, National Director of Communications at NAMI, Anand Pandya, M.D., former NAMI Board President, and Ken Duckworth, M.D., Medical Director at NAMI. The authors received help from Dr. John Torus, a leader in technology assessment for the American Psychiatric Association, and Adam Joseph, a Fulbright Scholar who has studied Twitter use and misuse of the word “schizophrenia.”
Visit NAMI’s website for more information about the study, including a detailed presentation of findings. In addition, presenters from NAMI will discuss the survey at the NAMI National Convention in Denver, July 6–9. We welcome you to come talk with us about the findings, how you think technology tools can be a resource and how NAMI can use technology to promote recovery.
Acknowledgments: Former NAMI Board President Keris Myrick played an important role in helping to conceptualize the project, helping to design the survey and offering her lived experience of an individual who uses technology in her recovery.
Ken Duckworth is NAMI’s medical director.