Disengagement from mental health services can lead to devastating consequences for individuals with schizophrenia and other serious mental illnesses who require ongoing treatment. We review the extent and correlates of dropping out of mental health treatment for individuals with schizophrenia and suggest strategies for facilitating treatment engagement. Although rates vary across studies, reviews of the literature suggest that up to one-third of individuals with serious mental illnesses who have had some contact with the mental health service system disengage from care. Younger age, male gender, ethnic minority background, and low social functioning have been consistently associated with disengagement from mental health treatment. Individuals with co-occurring psychiatric and substance use disorders, as well as those with earlyonset psychosis, are at particularly high risk of treatment dropout. Engagement strategies should specifically target these high-risk groups, as well as high-risk periods, including following an emergency room or hospital admission and the initial period of treatment. Interventions to enhance engagement in mental health treatment range from low-intensity interventions, such as appointment reminders, to high-intensity interventions, such as assertive community treatment. Disengagement from treatment may reflect the consumer’s perspective that treatment is not necessary, is not meeting their needs, or is not being provided in a collaborative manner. An emerging literature on patient-centered care and shared decision making in psychiatry provides suggestive evidence that efforts to enhance client-centered communication and promote individuals’ active involvement in mental health treatment decisions can also improve engagement in treatment.

Disengagement From Mental Health Treatment Among Individuals With Schizophrenia and Strategies for Facilitating Connections to Care: A Review of the Literature

Shared decision-making is increasingly advocated as an ideal model of treatment decision-making in the medical encounter. To date, the concept has been rather poorly and loosely defined. This paper attempts to provide greater conceptual clarity about shared treatment decision-making, identify some key characteristics of this model, and discuss measurement issues. The particular decision-making context that we focus on is potentially life threatening illnesses, where there are important decisions to be made at key points in the disease process, and several treatment options exist with different possible outcomes and substantial uncertainty. We suggest as key characteristics of shared decision-making (1) that at least two participants-physician and patient be involved; (2) that both parties share information; (3) that both parties take steps to build a consensus about the preferred treatment; and (4) that an agreement is reached on the treatment to implement. Some challenges to measuring shared decision-making are discussed as well as potential benefits of a shared decision-making model for both physicians and patients.

Shared Decision-making in the Medical Encounter: What Does It Mean? (Or, It Takes at Least Two to Tango)

The objectives of the intervention are: To assess the effects of provider-, consumer- or carer-directed shared decision making (SDM) interventions for people of all ages with mental health conditions, on a range of outcomes including: patient satisfaction, clinical outcomes, and health service outcomes.

/pdf/shared-decision-making-interventions-for-people-with-mental-37foskhzwd.pdf

Shared decision making interventions for people with mental health conditions

Patient and public involvement in health research is increasingly well established internationally, but the impacts of involvement on the research process are hard to evaluate. We describe a process of qualitative data analysis in a mental health research project with a high level of mental health service user and carer involvement, and reflect critically on how we produced our findings. Team members not from research backgrounds sometimes challenged academic conventions, leading to complex findings that would otherwise have been missing. An essential component of how we coproduced knowledge involved retaining methodological flexibility so that nonconventional research voices in the team could situate and critique what was conventionally known. Deliberate and transparent reflection on how "who we are" informed the knowledge we produced was integral to our inquiry. We conclude that reflecting on knowledge (co)production is a useful tool for evaluating the impact of patient and public involvement on health research.

Patient and Public Involvement in the Coproduction of Knowledge Reflection on the Analysis of Qualitative Data in a Mental Health Study

Shared decision making is a verb. It connotes a process, supported by specific information technologies, that reengineers how practitioners and people with diagnoses work together (Montori, Gafni, & Charles, 2006). Undoubtedly, the foundational values and principles of shared decision making are familiar to the readers of this journal. Person-centered care, respect for individual autonomy, choice and collaboration are well known and widely embraced in behavioral health and psychiatric rehabilitation (Anthony, 1979; Cohen, Farkas, Cohen, & Unger, 1991; USPRA, 2009). Shared decision making advances these principles through the use of specific information technologies such as decision aids and electronic decision support programs (O’Connor et al., 2009). When carefully designed and strategically inserted into the everyday workflow, these technologies hold the promise of helping busy practitioners put person-centered and recovery-based values into practice. In this paper we discuss the promise of shared decision making for advancing our field.

The promise of shared decision making in mental health.

Active consumer participation is critical in contemporary mental health care and treatment planning and has been a staple of the field of psychiatric rehabilitation for the last three decades. Providing the opportunity for consumers to chose interventions that fit personal preferences and recovery increase the likelihood that these interventions will enhance personal meaning, satisfaction and quality of life (Improving the Quality of Health Care for Mental and Substance Use Conditions, 2006). Similarly, self-determination and shared decision-making are critical components of recovery. As stated in the President's New Freedom Commission on Mental Health Final Report, recovery from mental illnesses should be the expectation in mental health care with services and treatments that are consumer and family-driven. Mental health care should be planned and delivered to ensure that consumers and families with children with mental health problems receive real and meaningful choices about treatment options and providers. The purpose of this paper is to explore the value and use of shared decision-making in health and mental health care, briefly examine the advantages and disadvantages of shared decision making and propose next steps in advancing use of shared decision-making in mental health care.

Promoting the value and practice of shared decision-making in mental health care.

adly, Barbara’s story is all too com -mon. Even with longstanding values ofself-determination within psychiatricrehabilitation (Cohen, Farkas, Cohen, U USPRA, 2009; Deegan,this issue), many people who use men -tal health services do not see them -selves as equal partners or feelempowered to make decisions aboutth ei rm nal ds v -ices. Studies find that people typicallywant more involvement in their healthand mental health treatment decisionsthan they often experience (Klein,Rosenberg, & Rosenberg, 2007).P eop lu singm ta h rvchave a strong desire to be involved indecisions about their medications, anarena often considered the solepurview of the physician (Roe,Goldblatt, Baloush-Klienman,Swarbrick, & Davidson, 2009). Theprocess of mental health recoveryhinges on individuals taking personalresponsibility for their lives, includingmaking decisions about how medica -tions, treatment, and other services fitinto their recovery plan (Schauer,

Pushing the envelope: shared decision making in mental health.

Objective: Previous research from the Cash and Counseling Demonstration and Evaluation (CCDE) programs in New Jersey, Arkansas, and Florida suggests that consumers’ control over personal care greatly improves their satisfaction with care arrangements and their outlook on life. Still, some argue that consumer-directed care may not be appropriate for consumers with a diagnosis of mental illness. This study examined the effectiveness of the CCDE program for those with a diagnosis of mental illness. Methods: This study examined nonelderly Medicaid beneficiaries in New Jersey with a diagnosis of mental illness and compared and contrasted the experiences of those in New Jersey’s CCDE program (N=109) and those who received services provided by an agency (N=119). Logistic regression analyses were performed on baseline and nine-month follow-up data. Results: By examining outcome measures—including satisfaction with care arrangements, consumers’ perceptions of paid caregivers’ attitudes, unmet needs, adverse events, and satisfaction with life—this study offers evidence that, from the perspective of consumers, the CCDE program is appropriate for participants with a mental illness diagnosis. For most outcome measures the CCDE program demonstrated a positive effect after baseline characteristics were controlled for. The analysis of measures of adverse events, health problems, and general health status did not yield statistically significant differences between the control group and the treatment group, indicating that CCDE care was at least as safe as agency-directed care. Conclusions: Considering the growing need for long-term care services and the limited resources available, a consumer-directed option can be a valuable alternative for persons with a diagnosis of mental illness. (Psychiatric Services 59:1299–1306, 2008)

https://ps.psychiatryonline.org/doi/pdf/10.1176/ps.2008.59.11.1299

Consumer-directed care for beneficiaries with mental illness: lessons from New Jersey's Cash and Counseling program.

For nearly 20 years, the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA)
has fostered social inclusion for Americans with mental and/or substance use disorders. SAMHSA
has done this by promoting the recovery paradigm, an approach predicated on a positive,
strength-based, and person-centered view of those with behavioral health conditions. SAMHSA has
provided leadership by promoting policies, programs, practices, and public awareness initiatives that
advance recovery, recovery support services, and recovery-oriented service delivery systems. SAMHSA’s
approach has been participatory, engaging a variety of stakeholders, and comprehensive, focusing
on multiple strategies in targeted priority areas.

Paolo del Vecchio

Papers

Promoting the value and practice of shared decision-making in mental health care.

Pushing the envelope: shared decision making in mental health.

Consumer-directed care for beneficiaries with mental illness: lessons from New Jersey's Cash and Counseling program.

Realizing Recovery: the U.S. Substance Abuse and Mental Health Services Administration’s Efforts to Foster Social Inclusion