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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).
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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.
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Trastorno Bipolar , Trastorno Depresivo Mayor , Trastornos Mentales , Esquizofrenia , Humanos , Trastorno Bipolar/diagnóstico , Trastornos Mentales/epidemiología , Salud Mental , ConsensoRESUMEN
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.
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Trastornos Mentales/epidemiología , Trastornos Mentales/psicología , Evaluación de Necesidades/estadística & datos numéricos , Grupo Paritario , Especialización/estadística & datos numéricos , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
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.
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Objetivos , Trastornos Mentales/tratamiento farmacológico , Servicios de Salud Mental , Evaluación de Necesidades , Aceptación de la Atención de Salud/psicología , Psicotrópicos/uso terapéutico , Adulto , Humanos , Investigación CualitativaRESUMEN
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.
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Centros Comunitarios de Salud Mental/normas , Toma de Decisiones , Participación del Paciente , Humanos , Mejoramiento de la Calidad , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Illness management and recovery strategies are considered evidence-based practices. The article describes how a web-based application, CommonGround, has been used to support implementation of such strategies in outpatient mental health services and assess its impact. The specific focus of this article is Personal Medicine, self-management strategies that are a salient component of the CommonGround intervention. METHOD: With support from counties and a not-for-profit managed care organization, CommonGround has been introduced in 10 medication clinics, one Assertive Community Treatment (ACT) team, and one peer support center across Pennsylvania. Methods include analysis of data from the application's database and evaluation of health functioning, symptoms, and progress toward recovery. RESULTS: Health functioning improved over time and use of self-management strategies was associated with fewer concerns about medication side effects, fewer concerns about the impact of mental health medicine on physical health, more reports that mental health medicines were helping, and greater progress in individuals' recovery. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Using Personal Medicine empowers individuals to work with their prescribers to find a "right balance" between what they do to be well and what they take to be well. This program helps individuals and their service team focus on individual strengths and resilient self-care strategies. More research is needed to assess factors that may predict changes in outcomes and how a web-based tool focused on self-management strategies may moderate those factors.
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Servicios Comunitarios de Salud Mental/organización & administración , Instrucción por Computador/métodos , Trastornos Mentales/rehabilitación , Participación del Paciente/psicología , Poder Psicológico , Autocuidado/métodos , Adaptación Psicológica , Adulto , Atención Ambulatoria , Práctica Clínica Basada en la Evidencia/métodos , Femenino , Estado de Salud , Humanos , Internet , Masculino , Programas Controlados de Atención en Salud , Trastornos Mentales/tratamiento farmacológico , Trastornos Mentales/psicología , Persona de Mediana Edad , Planes de Seguro sin Fines de Lucro , Evaluación de Resultado en la Atención de Salud/estadística & datos numéricos , Participación del Paciente/tendencias , Pennsylvania , Relaciones Profesional-Paciente , Evaluación de Programas y Proyectos de Salud , AutoinformeRESUMEN
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.
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Toma de Decisiones Asistida por Computador , Cumplimiento de la Medicación/estadística & datos numéricos , Trastornos Mentales/tratamiento farmacológico , Psicotrópicos/uso terapéutico , Adolescente , Adulto , Servicios Comunitarios de Salud Mental/organización & administración , Técnicas de Apoyo para la Decisión , Femenino , Humanos , Masculino , Medicaid , Persona de Mediana Edad , Participación del Paciente , Atención Dirigida al Paciente , Análisis de Regresión , Factores Socioeconómicos , Estados Unidos , Adulto JovenRESUMEN
This Open Forum describes a vision of comprehensive electronic decision support systems that could provide information and supports to both clients and clinicians in order to facilitate shared decision making and encourage collaborative management of illness and wellness. The authors argue that these systems have the potential to improve mental health care by enhancing and connecting the three elements of evidence-based medicine: client preferences, research evidence, and clinician skills.
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Sistemas de Apoyo a Decisiones Clínicas/organización & administración , Informática Médica , Medicina Basada en la Evidencia , Humanos , Servicios de Salud Mental , Participación del Paciente , Prioridad del PacienteAsunto(s)
Toma de Decisiones , Trastornos Mentales/rehabilitación , Participación del Paciente , Atención Dirigida al Paciente , Actitud del Personal de Salud , Técnicas de Apoyo para la Decisión , Humanos , Trastornos Mentales/psicología , Paternalismo , Educación del Paciente como Asunto , Derivación y Consulta , Esquizofrenia/rehabilitación , Psicología del EsquizofrénicoRESUMEN
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.
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Internet , Trastornos Mentales/rehabilitación , Participación del Paciente , Grupo Paritario , Psicotrópicos/uso terapéutico , Apoyo Social , Adulto , Actitud del Personal de Salud , Centros Comunitarios de Salud Mental , Femenino , Humanos , Kansas , Masculino , Relaciones Médico-Paciente , Psicotrópicos/efectos adversos , Derivación y Consulta , Programas Informáticos , Adulto JovenRESUMEN
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.
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Instituciones de Atención Ambulatoria , Toma de Decisiones , Trastornos Mentales/tratamiento farmacológico , Participación del Paciente , Grupos Focales , Humanos , Proyectos Piloto , Psicofarmacología , Programas Informáticos , Interfaz Usuario-ComputadorRESUMEN
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.
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Toma de Decisiones , Acontecimientos que Cambian la Vida , Cooperación del Paciente/psicología , Participación del Paciente/métodos , Participación del Paciente/psicología , Esquizofrenia/rehabilitación , Adaptación Psicológica , Conflicto Psicológico , Humanos , Grupo Paritario , Relaciones Médico-Paciente , Esquizofrenia/tratamiento farmacológico , Grupos de Autoayuda , Apoyo Social , Programas InformáticosRESUMEN
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.
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Convalecencia , Conducta Cooperativa , Toma de Decisiones , Quimioterapia/métodos , Trastornos Mentales/tratamiento farmacológico , Cooperación del Paciente , Relaciones Médico-Paciente , Humanos , Cooperación del Paciente/estadística & datos numéricos , Prevención SecundariaRESUMEN
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.