The dataset for the Psychiatric Medication Discontinuation and Reduction Study is now freely available through Open ICPSR (Inter-university Consortium for Political and Social Research)
This article explores the role of various groups that may be a source of social support for people who sought to discontinue psychiatric medications. To do this, we conducted data analyses to explore the relationship of social support to discontinuation.
Of all social support groups, only family was significantly associated with medication discontinuation in analysis. Respondents who rated family as helpful in the discontinuation process were less likely to completely discontinue than those who rated family as unhelpful or who reported no family involvement.
Additionally, we observed a statistically significant but nonlinear relationship where respondents who rated their families as either “very supportive” or “very unsupportive” of the decision to discontinue were less likely to meet their original discontinuation goal than those with more neutral ratings.
Clearly, families have an important and complex role in medication decision-making. Efforts to improve the quality of social networks should include family, as should future research, which should address family dynamics surrounding decision-making about psychiatric medication. Additional research on family perspectives about psychiatric medication discontinuation would also be a valuable addition to the literature and might inform family support interventions.
While 1 in 6 Americans take a psychiatric medication for serious mental illness, there is little research on people’s experiences coming off of them. In the first large scale study in the U.S., Live & Learn, Inc., in partnership with researchers at UCLA, UCSF and New York University, began to fill this knowledge gap. It surveyed 250 long-term users of psychiatric medications who had a diagnosis of serious mental illness and chose to discontinue use. The 2016 study, funded by the Foundation for Excellence in Mental Health Care and led by current and former users of psychiatric medications, sought to understand first-hand experiences and strategies of individuals who decided to discontinue psychiatric medications, and either stopped or reduced the use of these medications.