Laysha Ostrow, Bevin Croft, Anne Weaver & Sarah Naeger (2019) | Psychosis
Objective: Individuals in psychiatric treatment frequently choose to stop taking psychiatric medications, but little is known about the role of social supports in this process.
Methods: This service user-led study of 194 adults who sought to completely discontinue prescribed psychiatric medications explores the role of various groups that may be a source of social support. Respondents who attempted to discontinue medication completed a web survey. We conducted bivariate and multivariate analyses to explore the relationship of social support to discontinuation.
Results: Of all social support groups, only family was significantly associated with medication discontinuation. 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.
Discussion: The results of this study suggest 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.
While the utilization of psychiatric medications continues to increase, there is a gap in the research on how to both inform and support medication users of withdrawal and post-withdrawal syndromes related to medication discontinuation (Cohen & Recalt, 2019). Discontinuing psychotropic drugs from participants in randomized controlled trials: A systematic review. Psychotherapy and Psychosomatics, 88(2), 1–9.and avoid negative outcomes from medication discontinuation stemming from social isolation and inadequate treatment (Geyt, Awenat, Tai, & Haddock, 2017). Personal accounts of discontinuing neuroleptic medication for psychosis. Qualitative Health Research, 27(4), 559–572 Katz, Goldblatt, Hasson-Ohayon, & Roe, 2019). Retrospective accounts of the process of using and discontinuing psychiatric medication. Qualitative Health Research, 29(2), 198–210. Individuals in long-term psychiatric treatment frequently choose to stop taking psychiatric medications, but little is known about how they experience and cope with discontinuation and the role that social support may play in the process. In recent decades, health and behavioral health systems in the United States and internationally have emphasized the value of person-centered approaches and shared decision-making (Institute of Medicine, 2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press; New Freedom Commission on Mental Health, 2003). Achieving the promise: Transforming mental health care in America (Final Report). Rockville, MD: US Department of Health and Human Services). Because of the significance of the choice to take or not take psychiatric medication, and how to best stop taking it, research should inform and guide shared decision-making and person-centered approaches to care by identifying experiences, opinions, and processes that service users have found helpful in the medication discontinuation process (Russo, 2018). Through the eyes of the observed: Re-directing research on psychiatric drugs. McPin Talking Point Papers. Retrived from http://mcpin.org/wp-content/uploads/talking-point-paper-3-final.pdf).
As of this writing, there have been very few published empirical studies of the experience of service users diagnosed with serious mental health conditions who choose to discontinue their medications (Ostrow, Jessell, Hurd, Darrow, & Cohen, 2017). Discontinuing psychiatric medications: A survey of long-term users. Psychiatric Services, 68(12), 1232–1238), despite public interest in the topic and substantial clinical research on how to prevent discontinuation of psychotropic medications in this population (Carey & Gebeloff, 2018). Many people taking antidepressants discover they cannot quit. New York Times, pp. 7. Corrigan et al., 2012). From adherence to self-determination: Evolution of a treatment paradigm for people with serious mental illnesses. Psychiatric Services, 63(2), 169–173). An emerging area of study centers on the adverse effects of antidepressant discontinuation syndrome, although that research is more directed toward prescriber treatment strategies than service user experiences (Bhat & Kennedy, 2017). Recognition and management of antidepressant discontinuation syndrome. Journal of Psychiatry & Neuroscience: JPN, 42(4), E7. Wilson & Lader, 2015). A review of the management of antidepressant discontinuation symptoms. Therapeutic Advances in Psychopharmacology, 5(6), 357–368. In part owing to this lack of research that can enable clinical and personal decision-making, there are concerns about safe and effective discontinuation of psychiatric medications from clinicians and the general public, as well as service users, families, and support networks (Roe & Davidson, 2017). Noncompliance, nonadherence, and dropout: Outmoded terms for modern recovery-oriented mental health. Psychiatric Services, 68(10), 1076–1078).
Social support can be provided by many types of people, both in informal networks (e.g., family, friends, coworkers, supervisors) and in more formal helping networks (e.g., health-care professionals, human service workers) (Heaney & Israel, 2008). Social networks and social support. Health Behavior and Health Education: Theory, Research, and Practice, 4, 189–210). However, social support is differentiated from professional support received from clinical care providers or others who provide professional services without an explicit social support component. While providers can play a role in promoting social support for this population (Cullen et al., 2017). Social network, recovery attitudes and internal stigma among those with serious mental illness. International Journal of Social Psychiatry, 63(5), 448–458), providers are not a part of a patients’ natural support networks which are the focus of the current study.
Clinical research suggests social support is often associated with better treatment outcomes (Trivedi et al., 2006). Evaluation of outcomes with citalopram for depression using measurement-based care in STAR* D: Implications for clinical practice. American Journal of Psychiatry, 163(1), 28–40), potentially because of its influence on self-care behaviors for individuals with chronic conditions (Gallant, 2003). The influence of social support on chronic illness self-management: A review and directions for research. Health Education & Behavior: the Official Publication of the Society for Public Health Education, 30(2), 170–195). It then follows that social support may be important in influencing outcomes for people discontinuing or changing their treatment regimen. Individuals diagnosed with serious mental health conditions tend to have smaller social networks and fewer social contacts, and such individuals experience less satisfactory personal and occupational functioning compared to those with more robust social networks (Evert, Harvey, Trauer, & Herrman, 2003). The relationship between social networks and occupational and self-care functioning in people with psychosis. Social Psychiatry and Psychiatric Epidemiology, 38(4), 180–188; Townley, Miller, & Kloos, 2013). A little goes a long way: The impact of distal social support on community integration and recovery of individuals with psychiatric disabilities. American Journal of Community Psychology, 52(1–2), 84–96). Concomitantly, people diagnosed with serious mental health conditions who have greater levels of social support tend to experience lower levels of internalized stigma and higher levels of recovery, regardless of other factors, such as symptom severity (Corrigan, Sokol, & Rusch, 2013). The impact of self-stigma and mutual help programs on the quality of life of people with serious mental illness. Community Mental Health Journal, 49, 1–6; Cullen, 2017). Social ties generally have a positive effect on physical and mental health (Kawachi & Berkman, 2001). Social ties and mental health. Journal of Urban Health, 78(3), 458–467.), and these relationships may be particularly important for individuals experiencing stress, by directly influencing individuals’ perceptions or affecting health-relevant behaviors (Cohen, 2004). Social relationships and health. American Psychologist, 59(8), 676–68). Positive social support can increase a person’s ability to reframe stressors and difficulties as challenges and opportunities for growth (Davis, 2014). Social support and functional outcome in severe mental illness: The mediating role of proactive coping. Psychiatry Research, 215(1), 39–45), and for individuals with serious mental health conditions, satisfactory social supports may foster agency, hope, and recovery (Thomas, Muralidharan, Medoff, & Drapalski, 2016). Self-efficacy as a mediator of the relationship between social support and recovery in serious mental illness. Psychiatric Rehabilitation Journal, 39(4), 352–360).
Primary group social ties are composed of intimate and informal relationships and connections with family and friends; secondary groups are less personal, such as coworkers or religious communities, and members may enter and exit (Thoits, 2011). Mechanisms linking social ties and support to physical and mental health. Journal of Health and Social Behavior, 52(2), 145–161). Low employment (O’Day, Kleinman, Fischer, Morris, & Blyler, 2017). Preventing unemployment and disability benefit receipt among people with mental Illness: Evidence review and policy significance. Psychiatric Rehabilitation Journal, 40, 123–152) and community integration (Townley et al., 2013). A little goes a long way: The impact of distal social support on community integration and recovery of individuals with psychiatric disabilities. American Journal of Community Psychology, 52(1–2), 84–96) among people diagnosed with serious mental health conditions means that these individuals may be uniquely isolated, except from family and friends.
This study – which was led by researchers with their own personal experiences with psychiatric medication – was informed by theories about social groups, and aimed to better understand how informal social supports may impact people who have chosen to completely discontinue taking psychiatric medication, and in particular, which sources of social support were associated with meeting the goal of medication discontinuation. This exploratory study was informed by the literature on social support (Corrigan et al., 2013). The impact of self-stigma and mutual help programs on the quality of life of people with serious mental illness. Community Mental Health Journal, 49, 1–6; Cullen, 2017; Thomas et al., 2016). Self-efficacy as a mediator of the relationship between social support and recovery in serious mental illness. Psychiatric Rehabilitation Journal, 39(4), 352–360), shared decision-making (Miller & Pavlo, 2018). Two experts, one goal: Collaborative deprescribing in psychiatry. Current Psychiatry Reviews, 14(1), 12–18; Roe & Davidson, 2017). Noncompliance, nonadherence, and dropout: Outmoded terms for modern recovery-oriented mental health. Psychiatric Services, 68(10), 1076–1078; Zisman-Ilani et al., 2018). Continue, adjust, or stop antipsychotic medication: Developing and user testing an encounter decision aid for people with first-episode and long-term psychosis. BMC Psychiatry, 18(1), 142, and service user research (Russo, 2018). Through the eyes of the observed: Re-directing research on psychiatric drugs. McPin Talking Point Papers. Retrived from http://mcpin.org/wp-content/uploads/talking-point-paper-3-final.pdf) designed to identify facets of social support that may be overlooked in supporting peoples’ decisions about their medication discontinuation, and to suggest avenues for future research in this area.
Materials and methods
This study involved a sample of 250 adults who had a recent goal to completely discontinue up to two psychiatric medications prescribed for a serious mental health condition. Long-term users who had taken psychiatric medication for more than nine months and had discontinued or attempted to discontinue were the target population. Pre-specified inclusion criteria were assessed in a screener and included: over age 18; received a lifetime psychiatric diagnosis of schizophrenia, schizoaffective disorder, schizophreniform disorder, psychosis not otherwise specified (NOS), bipolar disorder I, bipolar disorder II, bipolar disorder NOS, or major depressive disorder; took prescribed psychiatric medications in one of five classes (antidepressants, antianxiety medications, antipsychotics, mood stabilizers, and stimulants) for more than nine months in the past five years; and had a goal to completely discontinue one or two of these medications and had attempted to do so.
Recruitment and data collection
Most researchers on the team identified as members of the target population and sent recruitment flyers and social media announcements to a broad network of service users, service providers, and other stakeholders across the United States. The survey and recruitment materials used language informed by the service user/survivor community, and so did not use medical jargon or terms such as “mental illness” with one exception: The inclusion screen did include a question about diagnosis in order to identify a sample that was taking medications for specific diagnoses termed serious mental health conditions by the medical and mental health-care fields.
Data were collected in June 2016 by using an anonymous online survey that began with a six-question inclusion screen to determine whether a respondent could proceed to the remaining sections. Because there was no existing questionnaire that could address the research aims, the survey instrument was created by the team by reviewing existing, validated measures and including specific questions as was appropriate. In some cases, new questions had to be constructed. The survey underwent pretesting with 10 members of the target population, focused on comprehension and clarity of questions and response formats (Tourangeau, Conrad, & Couper, 2013). The science of web surveys. New York, NY: Oxford University Press). The final survey had 105 questions pertaining to current medication status, motivations and strategies for discontinuation, withdrawal effects, social supports, relationships with providers, psychiatric treatment history, health status, and sociodemographic factors.
The study was reviewed and approved by an Institutional Review Board, and informed consent was obtained via Qualtrics survey software prior to the screener.
The analytic sample for this analysis of social supports is limited to 194 respondents with complete data in the final multivariate model. A sensitivity analysis using the full sample in the bivariate comparisons revealed no differences in the direction or significance of between-group associations, so all data presented are restricted to that sample for simplicity.
Dependent variable: medication discontinuation
All respondents had an initial goal to completely discontinue all prescribed psychiatric medications. The survey asked about the change in respondents’ medication use compared to when they began the discontinuation process, whether they had stopped taking medication, decreased, increased, or maintained the same dosage. More than half (57%; n = 110) of the sample met their goal of completely discontinuing all psychiatric medications. The remaining 43% (n = 84) either discontinued one medication but not the other, reduced but did not discontinue one or more medications, or remained on the same dose or higher.
Independent variables: helpfulness, supportiveness, and intensity of support
The survey asked about multiple categories of social supports to better understand which were perceived as helpful in the process of discontinuation. In exploratory analyses of the roles of social support, we used chi-square tests to compare ratings of perceived helpfulness of supports for those who did and did not discontinue the psychiatric medication. We examined nine different types of supports in this way: family, friends, members of religious community, mutual support group, addiction recovery support group, internet support group for medication discontinuation, other service users, other service users who had discontinued medication, and coworkers/colleagues.
The survey contained two questions related to social support in medication discontinuation. The first asked respondents how helpful their social supports were when coming off psychiatric medication(s); for each support type, respondents were asked “how helpful were the following people?” in the discontinuation process. Based on patterns observed in the data during bivariate analyses, we split helpfulness in the process of coming off into two categories: Helpful (consisting solely of the response “helpful”), and not helpful (consisting of all the other possible responses: neutral, unhelpful, didn’t ask, do not have).
A second set of questions asked respondents to rate specifically how supportive their friends and their family were in the decision to discontinue the psychiatric medication. The questions asked how supportive friends or family were of the decision to discontinue, and used the response categories “very supportive”, “somewhat supportive”, “neutral”, “somewhat unsupportive”, “very unsupportive”, “they were not aware of my decision”, and “does not apply.”
We found no clear associations between medication discontinuation and the social support variables with one exception: Family support. Therefore, we pursued additional logistic regression analyses to better understand how these relationships might impact discontinuation while controlling for other relevant respondent characteristics. In particular, we examined the respondents’ perception of their family members’ helpfulness in the process of discontinuation and their supportiveness of the decision to discontinue.
In logistic regression models, we controlled for the following variables: income, gender, housing status, level of education, psychiatric diagnosis, and severity of the impact of withdrawal effects. Income was categorized into a two-category variable: “less than $40,000 annually” vs. “$40,000 to $349,999 annually”. Gender was a three-category variable that included male, female, and other. Housing status included the following categories: lived alone, lived with family, lived with my partner and other. We included other two-category variables indicating a diagnosis for a psychotic disorder, bipolar, and depression; these variables were not exclusive of one another because some individuals reported having been given more than one diagnosis. We categorized the reported severity of the impact of withdrawal symptoms into three categories: low, medium and high.
We used logistic regression to measure the association between discontinuation and helpfulness of the family (helpful vs. not helpful), controlling for family supportiveness in the initial decision to discontinue (very supportive, somewhat supportive, neutral, somewhat unsupportive, very unsupportive, didn’t ask and don’t have), and all covariates.
Social support variables for all social groups, as well as sociodemographic questions with potential implications for social support, such as employment and housing status and other sample characteristics, are presented in Table 1, along with the results of chi-square tests examining their association with discontinuation status (“completely discontinued” vs. “another outcome”).
Psychiatric medication discontinuation and characteristics as a function of family support.
Our initial comparisons revealed a statistically significant negative association between helpfulness of family support during the process of discontinuation and complete discontinuation (p < 0.05): respondents who perceived their family to be helpful were less likely to completely discontinue.
In the exploratory analyses of supportiveness of the family in the decision to discontinue medication, we observed a significant (p < 0.05) but nonlinear pattern with the different response categories. Figure 1 displays this pattern, where respondents who rated their families as “very supportive” or “very unsupportive” were less likely to meet their original goal to completely discontinue, and those who rated their family as “somewhat” supportive or unsupportive, “neutral”, or “unaware” were more likely to meet this goal.
Family supportiveness in discontinuation decision and discontinuation outcome, organized by intensity of involvement.
X2 = 19.9255; p < 0.01.
Family supportiveness was included as a variable in the multivariate analysis to account for this association. In the discussion section of this paper, we include additional reflections on the implications of this unexpected finding.
As shown in Table 2, our logistic regression found that the association between family helpfulness in the process of coming off was significantly associated with discontinuation status (OR = 0.24; p < 0.05). Those who rated their families as “helpful” were 76% less likely to completely discontinue than those who said their families were “not helpful”, when controlling for family supportiveness and other demographic, socioeconomic, and clinical characteristics.
This exploratory study is the first to examine the relationship between informal social support and psychiatric medication discontinuation in a large sample of long-term medication users who had a goal to completely discontinue. Although some respondents reported that friends, other services users, and many others were “helpful” in the process, only family support had a clear relationship with medication discontinuation. As this was an exploratory study, we followed the empirical findings, despite their counter-intuitive nature, and focused on the role of family with an objective to better understand how families contribute to service users meeting their medication goals.
The primary construct used in this study to understand family involvement in the discontinuation process was helpfulness in the process. For respondents in this study, we observed a negative association between family helpfulness in the medication discontinuation process and meeting medication discontinuation goals. Individuals with “helpful” family members were less likely to discontinue their psychiatric medications, even though discontinuation was their initial goal. This counterintuitive result suggests that there may be complex dynamics when it comes to family involvement in discontinuation.
Given our secondary finding, this complexity perhaps stems from dynamics in the original decision-making process. These results showed a non-linear association between intensity of family support of the decision to discontinue and achievement of original medication discontinuation goals. Individuals who rated their families as either “very supportive” or “very unsupportive” of their decision were less likely achieve their discontinuation goal than individuals whose families were rated as somewhere in-between, or individuals whose families were not involved in the process at all. This finding suggests that achievement of initial discontinuation goals was not necessarily related to positive or negative family support of the decision to discontinue (supportive vs. unsupportive), but rather to the intensity of that support: respondents who had not completely discontinued were more likely to rate their families as “very” supportive or “very” unsupportive. Correspondingly, those who discontinued appeared to rate their families as having less intense levels of support of the decision to discontinue – whether positive or negative.
Together, these two findings related to perceived family attitudes of help and support in medication decision-making and the process of discontinuation are impossible to directly interpret given the data available. It could be that individuals who had originally had a goal to completely discontinue prescribed psychiatric medications and had family relationships characterized by these dynamics changed their minds about completely discontinuing. Family perceptions of recovery and wellness are sometimes different than the service user’s own perceptions of recovery and wellness, which has historically caused tension between service user and family advocates (Sylvia Caras, 1998). Personal accounts: The downside of the family-organized mental illness advocacy movement. Psychiatric Services, 49(6), 763–764). The family and consumer/survivor/ex-patient movements have generally represented ideological conflicts between family members and service users regarding biologically based explanation of mental illness and forced treatment (McLean, 2000). From ex-patient alternatives to consumer options: Consequences of consumerism for psychiatric consumers and the ex-patient movement. International Journal of Health Services, 30(4), 821–847.
Family members often play a prominent role in the social networks of many people diagnosed with serious mental illness. Characteristics of relationships between individuals and family members that impact recovery can have both positive and negative influences on clinical conditions, depending on the nature of the relationship (Wang, Chen, & Yang, 2017). Effect of caregivers’ expressed emotion on the care burden and rehospitalization rate of schizophrenia. Patient Preference and Adherence, 11, 1505–1511. These relationships can vary based on components of family functioning that can impact a person’s recovery, such as communication styles, core values, ability to adapt to and tolerate stress, and history of family trauma (Ruscio, Colborn, Yang, Koss, & Neely et al., 2017). Expressed emotion and recurrence of suicidal behaviors: Review, conceptual model, and recommendations. Suicidology Online, 8(22), 2–11, as well as factors such as the person’s psychiatric history and diagnosis; functional, occupational, and social impairments; co-occurring substance use (Labrum, 2018). Caregiving for relatives with psychiatric disorders vs. co-occurring psychiatric and substance use disorders. Psychiatric Quarterly, 89, 631–644; and a history of family trauma (Ruscio et al., 2017). Expressed emotion and recurrence of suicidal behaviors: Review, conceptual model, and recommendations. Suicidology Online, 8(22), 2–11.
Family members often act as caregivers for individuals diagnosed with serious mental illnesses. In general family, support has been shown to be positively associated with adherence to medication (Velligan et al., 2010). Strategies for addressing adherence problems in patients with serious and persistent mental illness: Recommendations from the expert consensus guidelines. Journal of Psychiatric Practice®, 16(5), 306–324, as is positive attitudes of the family towards treatment (Velligan, Sajatovic, Hatch, Kramata, & Docherty, 2017). Why do psychiatric patients stop antipsychotic medication? A systematic review of reasons for nonadherence to medication in patients with serious mental illness. Patient Preference and Adherence, 11, 449. While family member involvement in treatment may improve recovery outcomes and reducing negative outcomes such as hospitalization and criminal justice system involvement, this relationship may also cause negative outcomes for family members themselves such as economic hardship, lack of social connectedness, and anxiety (McNeil, 2013). Understanding family-centered care in the mental health system: Perspectives from family members caring for relatives with mental health issues. Social Work in Mental Health, 11(1), 55–74. Other research has focused on family member’s response to the person in need as critical to their recovery: while family members may act supportively by providing care directly, they may also negatively influence outcomes by demonstrating critical emotions towards their family member (Wang et al., 2017). Effect of caregivers’ expressed emotion on the care burden and rehospitalization rate of schizophrenia. Patient Preference and Adherence, 11, 1505–1511. Our findings may point to these other family dynamics in medication discontinuation – rather than the degree of positivity about the process or the decision – as most related to eventual complete discontinuation.
While we cannot conclude from this study, the intensity of involvement as measured in the present study suggests future research on this emotional component of family dynamics. Expressed emotion involves emotionally over-involved family attitudes toward people with mental health conditions (Brown & Rutter, 1966Brown, G. W., & Rutter, M. (1966). The measurement of family activities and relationships: A methodological study. Human Relations, 19, 241–263. Our findings preliminarily point to families described as “very unsupportive” reflecting critical or hostile attitudes and those described as “very supportive” reflecting emotional over-involvement. Some studies have included psychiatric medication compliance in their research on expressed emotion (Marquez & Ramirez Garcia, 2011Marquez, J. A., & Ramirez Garcia, J. L. (2011). Family caregivers’ monitoring of medication usage: A qualitative study of Mexican-Origin families with serious mental illness. Culture, Medicine and Psychiatry, 35, 63–82; Ruscio et al., 2017). Expressed emotion and recurrence of suicidal behaviors: Review, conceptual model, and recommendations. Suicidology Online, 8(22), 2–11; Wang et al., 2017Wang, X., Chen, Q., & Yang, M. (2017). Effect of caregivers’ expressed emotion on the care burden and rehospitalization rate of schizophrenia. Patient Preference and Adherence, 11, 1505–1511, but none have considered the impact of high expressed emotion on people wishing to discontinue psychiatric medications.
Strengths and limitations
This study carries limitations and strengths. The safest and effective means of medication discontinuation for long-term users who choose to discontinue is an important question and could potentially consist of timing, substitutions, self-care practices, clinical innovations, etc. That question is not answerable by this study’s design; it only measures one point in time, and participants were not randomly selected. The current study offers commentary on the particular issue of family support and discontinuation and suggests avenues for future research specifically in this area. Specific Limitations related to sampling include the use of a non-random sample and self-selection bias (that is, individuals who decided to take the survey might be different in important ways from the target population for the study). As with all research on the interpersonal impacts of social groups and family support, it is important to consider cultural differences. Culture may influence service user preferences for family involvement in treatment (Leff et al., 2016). Measurement of perceived and technical quality of care for depression in racially and ethnically diverse groups. Journal of Immigrant and Minority Health, 1–9. doi:10.1007/s10903-015-0286-x. The current sample is predominantly white and female, with a limited representation of individuals and families from other cultures. Future research should further explore the role of family attitudes and roles in psychiatric discontinuation using more diverse samples.
Measurement biases include missing data due to items left blank and survey not being completed, and potential issues remembering information about the past accurately. Additionally, some of the wording of the survey turns out to have a complicated interpretation of results discussed here. In particular, the word “helpful” may be problematic in that it is unclear whether it means support and love that is perceived positively, or indicates involvement and over-involvement related to fear and uncertainty, or simply more neutral interest.
The study’s primary strength, also discussed elsewhere, is the salience of the topic to persons with lived experience and their families, and its valuable contribution to the limited literature on experiences of psychiatric medication discontinuation. Researchers who identify as current and former users of psychiatric medications had significant control over the research process, which has the advantage of not only enhancing processes such as recruitment and dissemination, but explicitly using this unique expertise to develop research questions (Blyler, Fox, & Brown, 2010). How governments and other funding sources can facilitate self-help research and services media. New York, NY: Springer Science+Business Media. Croft, Ostrow, Italia, Camp-Bernard, & Jacobs, 2016. Peer interviewers in mental health services research. The Journal of Mental Health Training, Education and Practice, 11(4), 234–243. Delman & Lincoln, 2009Delman, J., & Lincoln, A. (2009). Service users as paid research workers: Principles for active involvement and good practice guidance. In J. Wallcraft, B. Schrank, & M. Amering (Eds.), Handbook of service user involvement in mental health research (pp. 139–152). Oxford, UK: John Wiley & Sons; Ostrow, Penney, Stuart, & Leaf, 2017). Web-based survey data collection with peer support and advocacy organizations: Implications of participatory methods. Progress in Community Health Partnerships: Research, Education, and Action, 11(1), 45–52. This study’s orientation aligns with research on shared decision-making, which highlights the importance of supporting patient choice and control in the psychiatric medication process (Roe & Davidson, 2017). Noncompliance, nonadherence, and dropout: Outmoded terms for modern recovery-oriented mental health. Psychiatric Services, 68(10), 1076–1078.Zisman-Ilani et al., 2018). Continue, adjust, or stop antipsychotic medication: Developing and user testing an encounter decision aid for people with first-episode and long-term psychosis. BMC Psychiatry, 18(1), 142. It also adds to the discussion of approaches that promote patient activation – having the knowledge, skills, and confidence to manage one’s own healthcare – which is associated with stronger therapeutic alliance (Allen et al., 2017). Patient-provider therapeutic alliance contributes to patient activation in community mental health clinics. Administration and Policy in Mental Health, 44(4), 431–440, greater care experiences, better health and functioning outcomes, and lower health-care costs (Green et al., 2010). Development of the Patient Activation Measure for mental health. Administration and Policy in Mental Health and Mental Health Services Research, 37(4), 327–333. Hibbard, Greene, & Overton, 2013. Patients with lower activation associated with higher costs; Delivery systems should know their patients’ scores. Health Affairs, 32(2), 216–222.
We have chosen in this exploratory study to focus narrowly on contributions of informal social support to the goal of complete discontinuation in order to suggest directions for future research on these supports. Research that explores service user experiences of discontinuation – including the role of families – can enhance clinicians’ ability to engage in shared decision-making and promote activation (Miller & Pavlo, 2018). Two experts, one goal: Collaborative deprescribing in psychiatry. Current Psychiatry Reviews, 14(1), 12–18. Additional research exploring the working relationship with prescribing clinicians and psychotherapists will add to the findings presented here, and are forthcoming from this data (Darrow, Ostrow, Pelot, and Naeger, in prep.). Additionally, research addressing how different factors might influence the success of discontinuation and the severity of discontinuation within major classes of drugs will contribute a broader understanding of the entire process. However, the inferences that can be drawn from this study are limited by the design, and research using population-based samples and a prospective design would yield more generalizable knowledge about the entire process, including addressing targeted areas for practice and policy such as social and clinical support.
The results of this study suggest that families have an important and complex role in medication decision-making. While other studies have used qualitative methods to explore the experiences and outcomes of individuals who chose to discontinue medications (Katz et al., 2019). Retrospective accounts of the process of using and discontinuing psychiatric medication. Qualitative Health Research, 29(2), 198–210. Geyt et al., 2017). Personal accounts of discontinuing neuroleptic medication for psychosis. Qualitative Health Research, 27(4), 559–572, none have specifically explored the roles or experiences of family members in this process. Qualitative research on these relationships would help to unpack some of the dynamics we could not fully interpret from our findings here. Family members play a prominent role in social networks, and any policy or practice intervention that can improve the quality of natural social networks – including families – is critical for enabling positive outcomes and self-determination. More research is needed on the complex relationship between family dynamics, particularly surrounding decision-making about psychiatric medication. Additional research on family perspectives on psychiatric medication discontinuation would also be a valuable addition to the literature and might inform family support interventions.
The authors wish to thank the community of individuals with lived experience who highlighted the need for research on medication discontinuation and inspired the current study. Authors particularly recognize leaders in this community, Will Hall, MA, Dipl.PW, Dina Tyler, and Monica Cassani, who conceived the study or acquired funding and were members of our Stakeholder Advisory Board, providing feedback on methods and instruments and promoting this research effort. This research was supported under a grant for the Psychiatric Medication Discontinuation/Reduction Study from the Foundation for Excellence in Mental Health Care. The authors also acknowledge members of our research team, Lauren Jessell, LMSW, Lauren Donahue, PMHNP, and Vanessa Krasinski, PMHNP, for their contributions to the design or to data collection, management, and coding.
No potential conflict of interest was reported by the authors.