Unmet Needs of People with Serious Mental Illness: Perspectives from Certified Peer Specialists.

Examine the unmet needs of people with serious mental illness (SMI) from the perspective of certified peer specialists. 267 certified peer specialists from 38 states completed an online survey (female [73%], 50.9 [SD = 12] years, and non-Hispanic White [79.8%]). Many respondents reported a primary mental health diagnoses (n = 200), 22 respondents reported their diagnosis as schizophrenia spectrum disorder (11%), 46 respondents reported bipolar disorder (22.1%), 47 respondents reported major depressive disorder (22.6%), 29 respondents reported post-traumatic stress disorder (13.9%), 27 respondents reported alcohol/substance use disorder (13%), 2 respondents reported personality disorder (1%), and 12 reported "other" (5.8%). A mixed methods convergence analysis integrated quantitative with qualitative data. Social isolation (n = 160, 59.9%) and feeling lonely (n = 159, 59.6%) were the most highly endorsed unmet need, followed by the need to address chronic health conditions (n = 80, 30%), prevent mental health hospitalization (n = 71, 23.6%), and prevent drug use (n = 66, 24.7%). Four themes emerged: need to address basic necessities, loneliness and social isolation, hope, and addiction. Addressing loneliness and social isolation were identified as the primary unmet needs among people with SMI. Addressing co-morbid health conditions may simultaneously impact other unmet needs. Hope is an important intervention target. Initial insights from this study can be used to guide researchers' efforts to incorporate certified peer specialists perspectives in developing programs to meet the needs of people with SMI. Future research using participatory research methods can further examine these initial insights.

Continue, adjust, or stop antipsychotic medication: developing and user testing an encounter decision aid for people with first-episode and long-term psychosis.

BACKGROUND: People with psychosis struggle with decisions about their use of antipsychotics. They often want to reduce the dose or stop, while facing uncertainty regarding the effects these decisions will have on their treatment and recovery. They may also fear raising this issue with clinicians. The purpose of this study was to develop and test a shared decision making (SDM) tool to support patients and clinicians in making decisions about antipsychotics. METHODS: A diverse editorial research team developed an Encounter Decision Aid (EDA) for patients and clinicians to use as part of the psychiatric consultation. The EDA was tested using 24 semistructured interviews with participants representing six stakeholder groups: patients with first-episode psychosis, patients with long-term psychosis, family members, psychiatrists, mental health counselors, and administrators. We used inductive and deductive coding of interview transcripts to identify points to revise within three domains: general impression and purpose of the EDA; suggested changes to the content, wording, and appearance; and usability and potential contribution to the psychiatric consultation. RESULTS: An EDA was developed in an iterative process that yielded evidence-based answers to five frequently asked questions about antipsychotic medications. Patients with long-term psychosis and mental health counselors suggested more changes and revisions than patients with first-episode psychosis and psychiatrists. Family members suggested more revisions to the answers about potential risks of stopping or adjusting antipsychotics than other respondents. CONCLUSIONS: The EDA was perceived as potentially useful and feasible in psychiatric routine care, especially if presented during the consultation.

A Successful Implementation Strategy to Support Adoption of Decision Making in Mental Health Services.

Individual involvement in treatment decisions with providers, often through the use of decision support aids, improves quality of care. This study investigates an implementation strategy to bring decision support to community mental health centers (CMHC). Fifty-two CMHCs implemented a decision support toolkit supported by a 12-month learning collaborative using the Breakthrough Series model. Participation in learning collaborative activities was high, indicating feasibility of the implementation model. Progress by staff in meeting process aims around utilization of components of the toolkit improved significantly over time (p < .0001). Survey responses by individuals in service corroborate successful implementation. Community-based providers were able to successfully implement decision support in mental health services as evidenced by improved process outcomes and sustained practices over 1 year through the structure of the learning collaborative model.

Awakening on antipsychotic medication: A call to action.

OBJECTIVE: Explore a lived experience perspective on using antipsychotic medicine and call to action for psychiatric rehabilitation practitioners to get involved in preparing people diagnosed with serious mental illness (SMI) to have a voice and choice in antipsychotic medication treatment. METHODS: A first-person account of awakening on an antipsychotic medication for the first time is used to understand the lived experience and challenges of using it. Lessons learned are amplified through de-identified queries of the CommonGround database capturing concerns about antipsychotic medication of people diagnosed with SMI in public sector mental health clinics in the United States. RESULTS: Lived experience of "me-on-medicine" included embodied and perceptual changes to self when taking antipsychotic medications. Discordance between the team's goal and personal goals for medication treatment interfered with recovery. Analysis of more than 100,000 concerns about antipsychotic medications expressed by 57,370 CommonGround users showed the most frequent concerns are that medication is perceived as unhelpful (21%), side effects (13%), impact on health (12%), and concerns about feeling unmotivated to use medication (8%). Among CommonGround users below age 30, low motivation to take antipsychotics was the third most prevalent concern. Among CommonGround users over age 30, concerns about the impact on health were the third most dominant. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Psychiatric rehabilitation practitioners can support people diagnosed with SMI getting prepared to participate in decision making about antipsychotic medications with psychiatric care providers by identifying concerns and building skills and strategies to negotiate the new "me-on-medicine." (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Usability and Feasibility of the Antipsychotic Medication Decision Aid in a Community Program for First-Episode Psychosis.

OBJECTIVE: Although antipsychotic medications are considered first-line treatment for psychosis, rates of discontinuation and nonadherence are high, and debate persists about their use. This pilot study aimed to explore the usability, feasibility, and potential impact of a shared decision making (SDM) intervention, the Antipsychotic Medication Decision Aid (APM-DA), for decisions about use of antipsychotic medications. METHODS: A pilot randomized controlled trial was conducted with 17 participants in a first-episode psychosis program. Nine participants received the APM-DA, and eight received usual care. RESULTS: After their appointments, intervention group participants had less decisional conflict and greater satisfaction with decisions than control group participants had. Use of the APM-DA did not increase appointment length. Comparison of the intervention outcomes with the control outcomes was limited because of the small sample. CONCLUSIONS: The results support the feasibility and usability of an SDM process via the use of the APM-DA in routine community psychosis care.

Use of a computerized medication shared decision making tool in community mental health settings: impact on psychotropic medication adherence.

Healthcare reform emphasizes patient-centered care and shared decision-making. This study examined the impact on psychotropic adherence of a decision support center and computerized tool designed to empower and activate consumers prior to an outpatient medication management visit. Administrative data were used to identify 1,122 Medicaid-enrolled adults receiving psychotropic medication from community mental health centers over a two-year period from community mental health centers. Multivariate linear regression models were used to examine if tool users had higher rates of 180-day medication adherence than non-users. Older clients, Caucasian clients, those without recent hospitalizations, and those who were Medicaid-eligible due to disability had higher rates of 180-day medication adherence. After controlling for sociodemographics, clinical characteristics, baseline adherence, and secular changes over time, using the computerized tool did not affect adherence to psychotropic medications. The computerized decision tool did not affect medication adherence among clients in outpatient mental health clinics. Additional research should clarify the impact of decision-making tools on other important outcomes such as engagement, patient-prescriber communication, quality of care, self-management, and long-term clinical and functional outcomes.

Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement.

Importance: People with serious mental illness (SMI), defined as a diagnosis of schizophrenia spectrum disorder, bipolar disorder, or disabling major depressive disorder) die approximately 10 to 25 years earlier than the general population. Objective: To develop the first-ever lived experience-led research agenda to address early mortality in people with SMI. Evidence Review: A virtual 2-day roundtable comprising 40 individuals convened on May 24 and May 26, 2022, and used a virtual Delphi method to arrive at expert group consensus. Participants responded to 6 rounds of virtual Delphi discussion via email that prioritized research topics and agreement on recommendations. The roundtable was composed of individuals with lived experience of mental health and/or substance misuse, peer support specialists, recovery coaches, parents and caregivers of people with SMI, researchers and clinician-scientists with and without lived experience, policy makers, and patient-led organizations. Twenty-two of 28 (78.6%) of the authors who provided data represented people with lived experiences. Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI, direct email, and snowball sampling. Findings: The following recommendations are presented in order of priority as identified by the roundtable participants: (1) improve the empirical understanding of the direct and indirect social and biological contributions of trauma on morbidity and early mortality; (2) advance the role of family, extended families, and informal supporters; (3) recognize the importance of co-occurring disorders and early mortality; (4) redefine clinical education to reduce stigma and support clinicians through technological advancements to improve diagnostic accuracy; (5) examine outcomes meaningful to people with an SMI diagnosis, such as loneliness and sense of belonging, and stigma and their complex relationship with early mortality; (6) advance the science of pharmaceuticals, drug discovery, and choice in medication use; (7) use precision medicine to inform treatment; and (8) redefine the terms system literacy and health literacy. Conclusions and Relevance: The recommendations of this roundtable are a starting point for changing practice and highlighting lived experience-led research priorities as an option to move the field forward.

Promoting collaborative psychiatric care decision-making in community mental health centers: Insights from a patient-centered comparative effectiveness trial.

OBJECTIVE: Mental health service-users face important medication decisions; yet not all are active participants in the decision-making process. Little is known about which technology-supported interventions might effectively promote collaborative decision-making in psychiatric care. We compared the effectiveness of two technology-supported collaborative care decision-making approaches. METHOD: We used a cluster-randomized design with a mixed-methods approach. Participants were Medicaid-enrolled adults receiving psychiatric care in participating community mental health centers. Measurement-based care used computerized systematic symptom and medication screenings to inform provider decision-making. Person-centered care supported participants in completing computerized Health Reports and preparing to work with providers on collaborative decision-making about psychiatric care. Primary study outcomes included the patient experience of medication management and shared decision-making during psychiatric care. Analyses examined the impact of both approaches and explored moderating variables. We used qualitative methods to understand participation and implementation experiences. RESULTS: Across 14 sites 2,363 participants enrolled (1,162 in measurement-based care, 1,201 in person-centered care). We observed statistically significant improvements in patient experience of medication management scores for both study arms; however, the clinical significance of this change was minor. We found no significant changes for shared decision-making. Qualitative interviews revealed a range of factors associated usefulness of intervention assessment, provider-service-user communication, and site-level logistics. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: We observed modest positive findings related to our patient-centered outcomes. We identified important implementation facilitators and barriers that can inform the implementation of future comparative effectiveness patient-centered research. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

A web application to support recovery and shared decision making in psychiatric medication clinics.

TOPIC: Web-based technology and peer support can be paired to create an enhanced medication visit that supports shared decision making between psychiatrists and people with psychiatric disabilities. PURPOSE: The purpose of this paper is to describe an intervention to support recovery and shared decision making in the psychiatric medication visit. We will describe the CommonGround web application and a new role for peer staff in the medication clinic. Additionally, we will describe early adopters, patterns of use and lessons learned. SOURCES USED: Sources used include the application's database and observation of 8 sites using the web application with 4,783 users. CONCLUSIONS: Despite the constraints on the typical 15-minute medication consultation, it is possible to use technology and peer support to create an enhanced medication visit that supports shared decision making in the psychiatric medication visit.

Digital Peer Support Mental Health Interventions for People With a Lived Experience of a Serious Mental Illness: Systematic Review.

BACKGROUND: Peer support is recognized globally as an essential recovery service for people with mental health conditions. With the influx of digital mental health services changing the way mental health care is delivered, peer supporters are increasingly using technology to deliver peer support. In light of these technological advances, there is a need to review and synthesize the emergent evidence for peer-supported digital health interventions for adults with mental health conditions. OBJECTIVE: The aim of this study was to identify and review the evidence of digital peer support interventions for people with a lived experience of a serious mental illness. METHODS: This systematic review was conducted using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) procedures. The PubMed, Embase, Web of Science, Cochrane Central, CINAHL, and PsycINFO databases were searched for peer-reviewed articles published between 1946 and December 2018 that examined digital peer support interventions for people with a lived experience of a serious mental illness. Additional articles were found by searching the reference lists from the 27 articles that met the inclusion criteria and a Google Scholar search in June 2019. Participants, interventions, comparisons, outcomes, and study design (PICOS) criteria were used to assess study eligibility. Two authors independently screened titles and abstracts, and reviewed all full-text articles meeting the inclusion criteria. Discrepancies were discussed and resolved. All included studies were assessed for methodological quality using the Methodological Quality Rating Scale. RESULTS: A total of 30 studies (11 randomized controlled trials, 2 quasiexperimental, 15 pre-post designs, and 2 qualitative studies) were included that reported on 24 interventions. Most of the studies demonstrated feasibility, acceptability, and preliminary effectiveness of peer-to-peer networks, peer-delivered interventions supported with technology, and use of asynchronous and synchronous technologies. CONCLUSIONS: Digital peer support interventions appear to be feasible and acceptable, with strong potential for clinical effectiveness. However, the field is in the early stages of development and requires well-powered efficacy and clinical effectiveness trials. TRIAL REGISTRATION: PROSPERO CRD42020139037; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID= 139037.

A narrative study of the experiences of student nurses who have participated in the Hearing Voices that are Distressing simulation.

The aim of this study was to provide nursing students with an experiential learning opportunity which simulated living with the challenge of voice hearing. The purpose was to access understanding and insights of nursing students who completed "Hearing Voices that are Distressing: A Training Experience and Simulation for Students" (Deegan, 1996). Using a narrative research design and a convenience sample of 27 nursing students, participants were asked to respond in written format to three open ended prompts immediately following their participation in the simulation. Data generated was subjected to a thematic content analysis using a manual cut and paste approach to inductively find meanings and insights elicited from the respondents' actual words. Affirmed in this study was the use of this teaching tool to assist the students in their understanding of the challenges posed by voice hearing.

Best practices: a program to support shared decision making in an outpatient psychiatric medication clinic.

This column presents preliminary findings of an intervention to support shared decision making in psychopharmacology consultation. The waiting area in an urban psychiatric medication clinic was transformed into a peer-run Decision Support Center featuring a user-friendly, Internet-based software program with which clients could create a one-page computer-generated report for use in the medication consultation. The Decision Support Center was used 662 times by 189 unique users from a young-adult and general adult case management team from October 2006 to September 2007. All clients had severe mental disorders. Only ten clients refused to use the intervention at some point during the pilot study. Focus groups with medical staff (N=4), clients (N=16), case managers (N=14), and peer-specialist staff (N=3) reported that the intervention helped to create efficiencies in the consultation and empower clients to become more involved in treatment-related decision making. A randomized controlled trial is currently in process.

The lived experience of using psychiatric medication in the recovery process and a shared decision-making program to support it.

Decision making related to the use of psychiatric medication in the recovery process is complex. This paper describes some of the challenges involved in making decisions about using psychiatric medications. It also details an innovative intervention to support shared decision making in psychiatry. The program includes a peer-run decision support center and a software program to support the activation of medical staff and clients in shared decision making.

Enhancing Clients' Communication Regarding Goals for Using Psychiatric Medications.

OBJECTIVE: Discordance between psychiatric care providers' and clients' goals for medication treatment is prevalent and is a barrier to person-centered care. Power statements-short self-advocacy statements prepared by clients in response to a two-part template-offer a novel approach to help clients clarify and communicate their personal goals for using psychiatric medications. This study described the power statement method and examined a sample of power statements to understand clients' goals for medication treatment. METHODS: More than 17,000 adults with serious mental illness at 69 public mental health clinics had the option to develop power statements by using a Web application located in the clinic waiting areas. A database query determined the percentage of clients who entered power statements into the Web application. The authors examined textual data from a random sample of 300 power statements by using content analysis. RESULTS: Nearly 14,000 (79%) clients developed power statements. Of the 277 statements in the sample deemed appropriate for content analysis, 272 statements had responses to the first part of the template and 230 had responses to the second part. Clients wanted psychiatric medications to help control symptoms in the service of improving functioning. Common goals for taking psychiatric medications (N=230 statements) were to enhance relationships (51%), well-being (32%), self-sufficiency (23%), employment (19%), hobbies (15%), and self-improvement (10%). CONCLUSIONS: People with serious mental illness typically viewed medications as a means to pursue meaningful life goals. Power statements appear to be a simple and scalable technique to enhance clients' communication of their goals for psychiatric medication treatment.

Shared decision making and medication management in the recovery process.

Mental health professionals commonly conceptualize medication management for people with severe mental illness in terms of strategies to increase compliance or adherence. The authors argue that compliance is an inadequate construct because it fails to capture the dynamic complexity of autonomous clients who must navigate decisional conflicts in learning to manage disorders over the course of years or decades. Compliance is rooted in medical paternalism and is at odds with principles of person-centered care and evidence-based medicine. Using medication is an active process that involves complex decision making and a chance to work through decisional conflicts. It requires a partnership between two experts: the client and the practitioner. Shared decision making provides a model for them to assess a treatment's advantages and disadvantages within the context of recovering a life after a diagnosis of a major mental disorder.

The importance of personal medicine: a qualitative study of resilience in people with psychiatric disabilities.

BACKGROUND: Resilience does not refer to a magical state of invulnerability and the capacity for resilience does not end when one is diagnosed with a prolonged disorder or disease. Despite the enduring legacy of pessimism regarding resilience in the population of people diagnosed with psychiatric disorders, a majority do recover. AIM: The present study seeks to understand how people with psychiatric disorders demonstrate the capacity for resilience in the ways they use or do not use psychiatric medications in their daily lives. METHOD: A qualitative method and participatory action design was used to analyze interviews with 29 people diagnosed with psychiatric disorders. RESULTS: When discussing their use of psychiatric medications, research participants also talked about non-pharmaceutical, personal medicine. Personal medicine was found to be those activities that gave life meaning and purpose, and that served to raise self-esteem, decrease symptoms, and avoid unwanted outcomes such as hospitalization. When psychiatric medications interfered with non-pharmaceutical personal medicine, non-adherence often occurred. CONCLUSION: People with psychiatric disorders demonstrate resilience through the use of non-pharmaceutical, personal medicine in the recovery process. This understanding suggests that medication adherence may be improved when clinicians inquire about patients' personal medicine and use pharmaceuticals to support, rather than interfere with, these self-assessed health resources.