The role of time in involving patients with cancer in treatment decision making: A scoping review.

BACKGROUND: Time is often perceived as a barrier to shared decision making in cancer care. It remains unclear how time functions as a barrier and how it could be most effectively utilized. OBJECTIVE: This scoping review aimed to describe the role of time in patient involvement, and identify strategies to overcome time-related barriers. METHODS: Seven databases were searched for any publications on patient involvement in cancer treatment decisions, focusing on how time is used to involve patients, the association between time and patient involvement, and/or strategies to overcome time-related barriers. Reviewers worked independently and in duplicate to select publications and extract data. One coder thematically analyzed data, a second coder checked these analyses. RESULTS: The analysis of 26 eligible publications revealed four themes. Time was a resource 1) to process the diagnosis, 2) to obtain/process/consider information, 3) for patients and clinicians to spend together, and 4) for patient involvement in making decisions. DISCUSSION: Time is a resource throughout the treatment decision-making process, and generic strategies have been proposed to overcome time constraints. PRACTICE VALUE: Clinicians could co-create decision-making timelines with patients, spread decisions across several consultations, share written information with patients, and support healthcare redesigns that allocate the necessary time.

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).

The Role of Black Churches in Promoting Mental Health for Communities of Socioeconomically Disadvantaged Black Americans.

OBJECTIVE: Churches in socioeconomically disadvantaged neighborhoods serve as safe havens in many Black communities. Churches provide faith and charitable services but often have limited resources to address the mental health needs of their communities. This article reports on a collaborative effort, driven by members of a Black church, to understand mental health needs, coping strategies, and resilience factors in a community of socioeconomically disadvantaged Black Americans. METHODS: A community-based participatory research effort was established among a church, a community mental health organization, clinicians, and researchers to interview and survey individuals residing near the church. RESULTS: The sample consisted of 59 adults, most of whom were ages 46-65 years, men (N=34, 58%), and unemployed (N=46, 78%). Mean scores on the Patient Health Questionnaire-9 (9.2±7.7) and Generalized Anxiety Disorder-7 scale (9.4±6.7) were almost three times higher than those reported by studies of other Black populations in the United States. Five themes emerged: prolonged poverty and daily exposure to violence trigger emotional distress, mental health stigma affects help seeking, spirituality promotes mental relief and personal recovery, spirituality helps in coping with poverty and unsafe neighborhoods, and church-based programs are needed. CONCLUSIONS: Uptake of traditional mental health services was low, and reliance on faith and resource distribution by the church was high. Church-led interventions are needed to promote mental health at the individual and community levels. Mental health stigma, and negative attitudes toward mental health promotion in the community, may be addressed by integrating traditional mental health services in church-based recreational and leisure activities.

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.

Military culture and collaborative decision-making in mental healthcare: cultural, communication and policy considerations.

Military culture relies on hierarchy and obedience, which contradict the implementation and use of collaborative care models. In this commentary, a team of lived experience, clinical and research experts discuss, for the first time, cultural, communication and policy considerations for implementing collaborative care models in military mental healthcare settings.

Disparities in sport participation of transgender women: a systematic and scoping review protocol.

INTRODUCTION: Transgender women experience disparities in sport participation that are exacerbated by policies from sport organisations and legislation in the USA regulating the participation of transgender women in the category that best aligns with their gender identity. Both transgender and cisgender women are affected by these policies because sport organisations do not have a clear understanding of the effects of gender-affirming hormone therapy on transgender women and the unfair advantage they may have over cisgender women athletes. This article describes a review protocol to understand disparities in sport participation of transgender women. METHODS AND ANALYSIS: A systematic and scoping review is being conducted. Studies are included if they explore disparities in sport participation (ie, participation rates, real and/or perceived barriers to participation) of transgender women of any age. A search strategy has been developed for PubMed, EMBASE, Web of Science, Cochrane Library and CINAHL. Relevant grey literature will also be scanned. The planned search dates are July and August 2023. ETHICS AND DISSEMINATION: This review does not directly involve human subjects, so ethical approval is not required. Findings from the systematic review will be disseminated via publications in peer-reviewed journals and conferences.

Open Notes Use in Psychiatry-The Need for Multilevel Efforts in Research and Practice.

This Viewpoint highlights barriers to incorporating the use of open notes as a component of patient-centered psychiatric care.

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.

Measures of Shared Decision Making for People With Mental Disorders and Limited Decisional Capacity: A Systematic Review.

OBJECTIVE: Shared decision making (SDM) is a health communication model to improve treatment decision making and is underused for people with mental health conditions and limited, impaired, or fluctuating decisional capacity. SDM measures are essential to enhancing the adoption and implementation of SDM practices, yet no tools or research findings exist that explicitly focus on measuring SDM with such patients. The aim of this review was to identify instruments that measure SDM involving individuals with mental health conditions and limited decisional capacity, their family members, and their health and social care providers. METHODS: A systematic review was performed by searching the PubMed, Embase, Web of Science, and PsycInfo databases. The authors included peer-reviewed, quantitative articles published in English during 2009-2022 that focused on adults (≥18 years old). All authors performed the screening independently. RESULTS: A total of 7,956 records were identified, six of which met the inclusion criteria for full-text review and five of which were analyzed (one full-text article was not available). No instruments were identified that measured forms of SDM involving patients with mental health conditions and limited, impaired, or fluctuating decisional capacity. CONCLUSIONS: Measurement instruments to address and assess SDM in health care-related communication processes involving individuals with a mental health condition and limited decisional capacity are needed.

Urban neighbourhood elements that influence psychoactive substance use among populations with adverse childhood experiences: a scoping review protocol.

INTRODUCTION: Adverse childhood experiences (ACEs) are stressful or traumatic events experienced before the age of 18 years old. ACEs have been associated with an increased risk for substance use in adulthood. While an abundance of research has examined psychosocial factors that explain the link between ACEs and psychoactive substance use, little is known about the additional influence of the urban neighbourhood environment, including community-level factors, that influence the risk of substance use among populations with a history of ACEs. METHODS AND ANALYSIS: The following databases will be systematically searched: PubMed, Embase, Web of Science, Cochrane, PsycInfo, CINAHL, Clinicaltrials.gov and TRIP medical databases. After the title and abstract screening and full-text screening, we will also conduct a manual search of the reference sections of included articles and include relevant citations. Eligibility criteria include peer-reviewed articles that focus on populations with at least one ACE, factors from the urban neighbourhood community, such as elements from the built environment, presence of community service programmes, quality and vacancy of housing, neighbourhood level social cohesion, and neighbourhood level collective efficacy or crime. Included articles should also include terms such as 'substance abuse', 'prescription misuse' and 'dependence'. Only studies written or translated into the English language will be included. ETHICS AND DISSEMINATION: This systematic and scoping review will focus on peer-reviewed publications and does not require ethics approval. Findings will be available for clinicians, researchers and community members via publications and social media. This protocol describes the rationale and methods for the first scoping review to inform future research and community-level intervention development that targets substance use among populations who have experienced ACEs. PROSPERO REGISTRATION NUMBER: CRD42023405151.

Promoting Social Prescribing in Psychiatry-Using Shared Decision-Making and Peer Support.

This Viewpoint discusses shared decision-making and peer support to promote prescription of nonclinical services based on patients' preferences, goals, and needs as well as locally available services.

Barriers to Meaningful Participatory Mental Health Services Research and Priority Next Steps: Findings From a National Survey.

OBJECTIVE: A growing consensus has emerged regarding the importance of stakeholder involvement in mental health services research. To identify barriers to and the extent of stakeholder involvement in participatory research, the authors undertook a mixed-methods study of researchers and community members who reported participation in such research. METHODS: Eight consultative focus groups were conducted with diverse groups of stakeholders in mental health services research (N=51 unique participants, mostly service users), followed by a survey of service users, family members, community providers, and researchers (N=98) with participatory research experience. Focus groups helped identify facilitators and barriers to meaningful research collaboration, which were operationalized in the national survey. Participants were also asked about high-priority next steps. RESULTS: The barrier most strongly endorsed as a large or very large problem in the field was lack of funding for stakeholder-led mental health services research (76%), followed by lack of researcher training in participatory methods (74%) and insufficiently diverse backgrounds among stakeholders (69%). The two most frequently identified high-priority next steps were ensuring training and continuing education for researchers and stakeholders (33%) and authentically centering lived experience and reducing tokenism in research (26%). CONCLUSIONS: These findings suggest a need for increased attention to and investment in the development, implementation, and sustainment of participatory methods that prioritize collaboration with direct stakeholders, particularly service users, in U.S. mental health services research. The findings also underscore the presence and potentially important role of researchers who dually identify as service users and actively contribute a broader orientation from the service user-survivor movement.

Disparities in Shared Decision-Making Research and Practice: The Case for Black American Patients.

OBJECTIVE: The extent of shared decision making (SDM) use in the care of Black patients is limited. We explored preferences, needs, and challenges of Black patients to enhance SDM offerings. METHODS: We performed interviews with 32 Black patients receiving type 2 diabetes care in safety-net primary care practices caring predominantly for Black people. RESULTS: The following 4 themes emerged: preference for humanistic communication, need to account for the role of family in decision making, need for medical information sharing, and mistrust of clinicians. CONCLUSION: Given the dearth of research on SDM among ethnic and racial minorities, this study offers patient-perspective recommendations to improve SDM offerings for Black patients in primary care settings. To enhance SDM with Black patients, acknowledgment of the importance of storytelling as a strategy, to place medical information in a context that makes it meaningful and memorable, is recommended. Triadic SDM, in which family members are centrally involved in decision making, is preferred over classical dyadic SDM. There is a need to reconsider the universalism assumption underlying contemporary SDM models and the relevancy of current SDM practices that were developed mostly without the feedback of participants of ethnic, racial, and cultural minorities.Annals "Online First" article.

Trends, challenges, and priorities for shared decision making in mental health: The first umbrella review.

BACKGROUND: Shared decision making (SDM) is a health communication model promoting patient-centered care that has not been routinely utilized in mental health. Inconsistent definitions, models, measurement tools, and lack of sufficient evidence for the effectiveness of SDM interventions are potential contributors to the limited use of SDM in mental health. AIMS: (1) Provide the first systematic analysis of global development trends and challenges of SDM research; (2) clarify the meaning, role, and measurement of SDM in mental health; (3) create a theoretical framework for key effective SDM components to guide future development and implementation of SDM interventions. METHODS: A comprehensive search strategy was conducted in CINAHL, PubMed, Scopus, MEDLINE, EMBASE, Cochrane Library, Web of Science, Scopus, and PsycInfo. Included reviews focused on SDM interventions for prevention and/or treatment of mental illness in adults. A narrative synthesis was performed to capture the range of interventions, populations, measurement tools, comparisons, and outcomes. RESULTS: 10 systematic reviews of SDM in mental health were included with 100 nested studies spanning from 2006 to 2020. All reviews focused on dyadic and psychopharmacological decision-making. Primary outcomes of SDM in mental health interventions include treatment satisfaction, medication adherence, symptom severity, quality of life, and hospital readmissions. Participant-related factors unique to SDM in mental health, such as stigma and mental capacity, were not reported. CONCLUSIONS: The current landscape of SDM in mental health is overwhelmingly disconnected from the needs and experiences of potential end-users; clients, clinicians, and family members. Most SDM interventions and tools were adapted from physical health and are mainly geared to psychopharmacological decision-making. The SDM in Mental Health Framework (SDM-MH), developed here, expands the scope of decisions to non-psychopharmacological discussions, diversifies the pool of SDM participants and settings, and offers potential primary target outcomes of SDM in mental health to reduce heterogeneity across studies.

Crohn's disease shared decision making intervention leads to more patients choosing combination therapy: a cluster randomised controlled trial.

BACKGROUND: Crohn's disease requires effective patient-clinician communication for successful illness and medication management. Shared decision making (SDM) has been suggested to improve communication around early intensive therapy. However, effective evidence-based SDM interventions for Crohn's disease are lacking, and the impact of SDM on Crohn's disease decision making and choice of therapy is unclear. AIM: To test the impact of SDM on choice of therapy, quality of the decision and provider trust compared to standard Crohn's disease care. METHODS: We conducted a multi-site cluster randomised controlled trial in 14 diverse gastroenterology practices in the US. RESULTS: A total of 158 adult patients with Crohn's disease within 15 years of their diagnosis, with no prior Crohn's disease complications, and who were candidates to receive immunomodulators or biologics, participated in the study. Among these, 99 received the intervention and 59 received standard care. Demographics were similar between groups, although there were more women assigned to standard care, and a slightly shorter disease duration among those in the intervention group. Participants in the intervention group more frequently chose combination therapy (25% versus 5% control, p < 0.001), had a significantly lower decisional conflict (p < 0.05) and had greater trust in their provider (p < 0.05). CONCLUSIONS: With rapidly expanding medication choices for Crohn's disease and slow uptake of early intensive therapy, SDM can personalise treatment strategies and has the potential to move the field of Crohn's disease management forward with an ultimate goal of consistently treating this disease early and intensively in appropriate patients. TRIAL REGISTRATION: Evaluating a Shared Decision Making Program for Crohn's Disease, ClinicalTrials.gov Identifier NCT02084290 https://clinicaltrials.gov/ct2/show/NCT02084290.

Addressing Substance Use in Psychiatric Care: An Old Problem With Renewed Urgency.

Patients, clinicians, researchers, and policy makers have long called for greater integration of services for people with co-occurring mental and substance use disorders. Decades later, these services remain fragmented in psychiatry across much of the United States. Mounting deaths from drug-related overdoses call for renewed focus on bringing substance use into the center of psychiatric services. This Open Forum explores factors within the field of psychiatry, including insufficient training related to substance use, prevalent stigma surrounding substance use, and limited availability of co-occurring disorder specialists, that reinforce this divide and offers solutions for better addressing substance use disorders in psychiatric care.