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OBJECTIVES: Collaborative care (CC) has demonstrated effectiveness for improving late-life depression in primary care, but clinics offering this service can find it challenging to address unmet social needs that may be contributing to their patients' depression. Clinics may benefit from better coordination and communication with community-based organizations (CBO) to strengthen depression treatment and to address unmet social needs. We evaluated the feasibility of adding a CBO to enhance standard collaborative care and the impact of such partnered care on older adults. DESIGN: Multisite, prepost evaluation. SETTING: Eight (n = 8) partnerships between primary care clinics and community-based organizations in California. PARTICIPANTS: A total of 707 depressed older adults (60 years or older) as evidenced by having a score of 10 or more on the Patient Health Questionnaire (PHQ-9) received care under the Care Partners project. INTERVENTION: A CBO partner was added to augment CC for late-life depression in primary care. MEASUREMENTS: The PHQ-9 was used to identify depressed older adults and to monitor depression symptom severity during a course of care. RESULTS: At baseline, the average PHQ-9 depression score across the partnerships was 15, indicating moderate depression severity. Participating patients saw an average 7-point reduction in their PHQ-9 score, baseline to last score assessed, with nearly half of all participants (48.4%) experiencing a 50% or greater improvement from their baseline score. CONCLUSIONS: Our findings suggest that partnering with a community-based organization is a feasible and effective way for primary care clinics to address late-life depression in their patients.
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Depresión , Trastorno Depresivo , Humanos , Anciano , Depresión/terapia , Cuidadores , Mejoramiento de la Calidad , Trastorno Depresivo/terapiaRESUMEN
BACKGROUND: National guidelines have called for greater integration of primary care and behavioral health services, with more recent attention to social care and community-based services. Under growing resource constraints healthcare organizations have tended to rely on referrals to external entities to address social care needs. Traditional referral models, however, may not be equipped to provide for the complex needs of older adults with depression. The Care Partners Project was designed to strengthen late-life depression care through integrated partnerships between primary care clinics and community-based organizations. We sought to understand how these integrated partnerships, with shared tasks and accountability across organizations, changed the nature of depression care for older adults. METHODS: We conducted 65 in-depth, semi-structured interviews and six focus groups with service providers involved in the project, including care managers, primary care providers, and psychiatric consultants, and applied inductive and deductive qualitative thematic analysis to develop themes around participants' experiences with the partnered initiative. RESULTS: We found the partnerships established by the Care Partners Project reshaped late-life depression care in two ways: (1) bidirectional communication across organizations facilitated greater recognition among providers of intersecting medical and social needs associated with late-life depression; and (2) depression care became more coordinated and effective as care teams established or strengthened relationships across organizations. CONCLUSIONS: These findings highlight the ways cross-organizational health and social care partnerships that move beyond traditional referrals can strengthen late-life depression care and enhance organizational capacities.
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Depresión , Organizaciones , Anciano , Depresión/terapia , Grupos Focales , Humanos , Atención Primaria de Salud , Investigación Cualitativa , Derivación y ConsultaRESUMEN
Interest and incentives are increasing around strategies whereby the health care sector can better identify and address patients' social and economic needs in the context of primary care delivery. This interest is likely to accelerate during the economic recession following the OVID-19 pandemic. Yet effective and sustainable strategies for integrating social care practices (eg, patient-facing social risk screening and activities to address identified needs) have not been clearly established. Lessons learned from more than 2 decades of research on behavioral health integration could be applied to efforts to integrate social care into primary care. In this article, we synthesize learnings from primary care and behavioral health care integration, and translate them into organizing principles with the goal of advancing social care integration practices to improve the health of both patients and communities.
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Medicina de la Conducta/métodos , Prestación Integrada de Atención de Salud/organización & administración , Servicios de Salud Mental , Atención Primaria de Salud/métodos , Apoyo Social , Humanos , Grupo de Atención al PacienteRESUMEN
Considerable progress has been made in the treatment of late-life depression over the past 20 years, yet considerable gaps in care remain. Gaps in care are particularly pronounced for older men, certain racial and ethnic minority groups, and those with comorbid medical or mental disorders. We reviewed the peer-reviewed literature and conducted interviews with experts in late-life depression to identify promising directions for effectiveness research to address these gaps in care. We searched the PubMed, PsychInfo, and CINHAL databases between January 1, 1998, through August 31, 2013, using terms related to late-life depression and any of the following: epidemiology, services organization, economics of care, underserved groups including health disparities, impact on caregivers, and interventions. The results of this selective review supplemented by more current recommendations from national experts highlight three priority research areas to improve health services for late-life depression: focusing on the unique needs of the patient through patient-centered care and culturally sensitive care, involving caregivers outside the traditional clinical care team, and involving alternate settings of care. We build on these results to offer five recommendations for future effectiveness research that hold considerable potential to advance intervention and health services development for late-life depression.
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Depresión/terapia , Trastorno Depresivo/terapia , Servicios de Salud Mental/normas , Atención Dirigida al Paciente/normas , Investigación/tendencias , Anciano , Comorbilidad , Humanos , Estados UnidosRESUMEN
The community-based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted eight focus group discussions with Yup'ik Alaska Native people in southwest Alaska (N = 60) and 6 (N = 61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they "could do something about" and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web-based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small-group conversations, and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two-way dialogue, rather than a one-way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit.
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Investigación Participativa Basada en la Comunidad/normas , Genética Médica/métodos , Difusión de la Información/métodos , Informe de Investigación , Alaska , Investigación Participativa Basada en la Comunidad/métodos , Grupos Focales , Sistemas Prepagos de Salud , Humanos , Internet , Inuk/psicología , WashingtónRESUMEN
Community-based participatory research (CBPR) is an important framework for partnering with communities to reduce health disparities. Working in partnership with community incurs additional costs, some that can be represented in a budget summary page and others that are tied to the competing demands placed on community and academic partners. These cost considerations can inform development of community-academic partnerships. We calculated costs from a case study based on an ongoing CBPR project involving a Community Planning Group (CPG) of community co-researchers in rural Alaska and a bicultural liaison group who help bridge communication between CPG and academic co-researchers. Budget considerations specific to CBPR include travel and other communication-related costs, compensation for community partners, and food served at meetings. We also identified sources of competing demands for community and academic partners. Our findings can inform budget discussions in community-academic partnerships. Discussions of competing demands on community partners' time can help plan timelines for CBPR projects. Our findings may also inform discussions about tenure and promotion policies that may represent barriers to participation in CBPR for academic researchers.
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Presupuestos , Redes Comunitarias/economía , Investigación Participativa Basada en la Comunidad/economía , Desarrollo de Programa/métodos , Alaska , Redes Comunitarias/organización & administración , Investigación Participativa Basada en la Comunidad/organización & administración , Disparidades en el Estado de Salud , Humanos , Indígenas Norteamericanos , Estudios de Casos Organizacionales , Población RuralRESUMEN
OBJECTIVE: Posttraumatic stress disorder (PTSD) and bipolar disorder are common in primary care. Evidence supports collaborative care in primary care settings to treat depression and anxiety, and recent studies have evaluated its effectiveness in treating complex conditions such as PTSD and bipolar disorder. This study aimed to examine how primary care clinicians experience collaborative care for patients with these more complex psychiatric disorders. METHODS: The authors conducted semistructured interviews with 22 primary care clinicians participating in a pragmatic trial that included telepsychiatry collaborative care (TCC) to treat patients with PTSD or bipolar disorder in rural or underserved areas. Analysis utilized a constant comparative method to identify recurring themes. RESULTS: Clinicians reported that TCC improved their confidence in managing medications for patients with PTSD or bipolar disorder and supported their ongoing learning and skill development. Clinicians also reported improvements in patient engagement in care. Care managers were crucial to realizing these benefits by fostering communication within the clinical team while engaging patients through regular outreach. Clinicians valued TCC because it included and supported them in improving the care of patients' mental health conditions, which opened opportunities for clinicians to enhance care and address co-occurring general medical conditions. Overall, benefits of the TCC model outweighed its minimal burdens. CONCLUSIONS: Clinicians found that TCC supported their care of patients with PTSD or bipolar disorder. This approach has the potential to extend the reach of specialty mental health care and to support primary care clinicians treating patients with these more complex psychiatric disorders.
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Trastorno Bipolar , Psiquiatría , Trastornos por Estrés Postraumático , Telemedicina , Humanos , Trastornos de Ansiedad , Trastorno Bipolar/terapia , Trastornos por Estrés Postraumático/terapia , Trastornos por Estrés Postraumático/psicología , Telemedicina/métodosRESUMEN
Background: While depression is a leading cause of poor health, less than half of older adults receive adequate care. Inequities in both access and outcomes are even more pronounced for socially disadvantaged older adults. The collaborative care model (CCM) has potential to reduce this burden through community-based organizations (CBOs) who serve these populations. However, CCM has been understudied in diverse cultural and resource-constrained contexts. We evaluated the implementation and effectiveness of PEARLS, a home-based CCM adapted with and for community health workers/promotores (CHWs/Ps). Methods: We used an instrumental case study design. Our case definition is a community-academic partnership to build CHW/P capacity for evidence-based depression care for older U.S. Latino adults in the Inland Empire region of California (2017-2020). We aimed to understand adaptations to fit local context; acceptability, feasibility, and fidelity; clinical effectiveness; and contextual determinants of implementation success or failure. Data sources included quantitative and qualitative administrative and evaluation data from participants and providers. We used descriptive statistics and paired t-tests to characterize care delivery and evaluate effectiveness post-intervention, and deductive thematic analysis to answer other aims. Findings: This case study included 152 PEARLS participants and nine data sources (N = 67 documents). The CBO including their CHWs/Ps partnered with the external implementation team made adaptations to PEARLS content, context, and implementation strategies to support CHWs/Ps and older adults. PEARLS was acceptable, feasible and delivered with fidelity. Participants showed significant reductions in depression severity at 5 months (98% clinical response rate [mean (SD), 13.7 (3.9) drop in pre/post PHQ-9; p < 0.001] and received support for 2.6 social needs on average. PEARLS delivery was facilitated by its relative advantage, adaptability, and trialability; the team's collective efficacy, buy-in, alignment with organization mission, and ongoing reflection and evaluation during implementation. Delivery was challenged by weak partnerships with clinics for participant referral, engagement, reimbursement, and sustainability post-grant funding. Discussion: This case study used existing data to learn how home-based CCM was adapted by and for CHWs/Ps to reduce health inequities in late-life depression and depression care among older Latino immigrants. The CBOs and CHWs/Ps strong trust and rapport, addressing social and health needs alongside depression care, and regular internal and external coaching and consultation, appeared to drive successful implementation and effectiveness.
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Agentes Comunitarios de Salud , Depresión , Humanos , Anciano , Atención a la Salud , Calidad de la Atención de Salud , Hispánicos o LatinosRESUMEN
Medicaid enrollees with behavioral health disorders often experience fragmented care, leading to high rates of preventable use of emergency departments (EDs). As part of its Medicaid Transformation Program, the Washington Health Care Authority partnered with regional accountable communities of health to collect data on behavioral health integration in community health centers. Clinics who participated in the integrated care demonstration received technical and financial support to increase capacity for integration. This column describes results from an analysis that linked clinic surveys to Medicaid claims to explore characteristics of highly integrated clinics and assess whether clinic capacity for behavioral health integration is associated with ED visit frequency.
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Medicaid , Trastornos Mentales , Estados Unidos , Humanos , Centros Comunitarios de Salud , Servicio de Urgencia en Hospital , Instituciones de Atención Ambulatoria , Trastornos Mentales/terapiaRESUMEN
BACKGROUND: Primary care practices in underserved and/or rural areas have limited access to mental health specialty resources for their patients. Telemedicine can help address this issue, but little is known about how patients and clinicians experience telemental health care. METHODS: This pragmatic randomized effectiveness trial compared telepsychiatry collaborative care, where telepsychiatrists provided consultation to primary care teams, to a referral approach, where telepsychiatrists and telepsychologists assumed responsibility for treatment. Twelve Federally Qualified Health Centers in rural and/or underserved areas in 3 states participated. RESULTS: Patients and clinicians reported that both interventions alleviated barriers to accessing mental health care, provided quality treatment, and offered improvements over usual care. Telepsychiatry collaborative care was identified as better for patients with difficulty developing trust with new providers. This approach also required more primary care involvement than referral care, creating more opportunities for clinician learning related to mental health diagnosis and treatment. The referral approach was identified as better suited for patients with higher complexity or desiring specific psychotherapies. CONCLUSIONS: Both approaches addressed patient needs and provided access to specialty mental health care. Each approach better aligned with different patients' needs, suggesting that having both approaches available to practices is optimal for supporting patient-centered care.
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Trastornos Mentales , Telemedicina , Humanos , Área sin Atención Médica , Trastornos Mentales/terapia , Servicios de Salud MentalRESUMEN
BACKGROUND: The coronavirus pandemic brought vast quantities of new information to the public for rapid consumption. This study explored how people most impacted by the pandemic have judged and perceived the quality of information regarding COVID-19 and regulated the information flow. METHODS: This was a qualitative study of semi-structured interviews developed as a pragmatic study targeting several groups most impacted by the pandemic. Participants were identified through convenience, purposive, and snowball sampling methods. They were interviewed by phone or video conference. RESULTS: Twenty-five participants were interviewed between 6 April 2020 and 1 May 2020. In terms of verifying information and judging its quality, people judged information by the source. People compared information across sources and attempted to verify the quality. Most felt self-assured about their capacity to judge information. Regarding the quality of information, many participants felt the information was skewed or inaccurate. Contradictory information was confusing, especially with a strong suspicion of ulterior motives of information sources impacting trust in the provided information. Yet, some recognized the iterative process of healthcare-related information. In terms of regulating information flow, many participants perceived flooding with information. To counter information overload, some became selective with types of information input. Many developed the habit of taking breaks periodically. CONCLUSION: Improving risk communication in a pandemic is of paramount importance. Organizations working in public health must develop ways to regulate information flow in collaboration with trusted community partners. Individuals also must develop strategies to improve information management.
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COVID-19 , Comunicación , Humanos , Pandemias , Investigación Cualitativa , SARS-CoV-2RESUMEN
Partnering across health clinics and community organisations, while worthwhile for improving health and well-being, is challenging and time consuming. Even partnerships that have essential elements for success in place face inevitable challenges. To better understand how cross-organisational partnerships work in practice, this paper examines collaborations between six primary care clinics and community-based organisations in the United States that were part of an initiative to address late-life depression using an enhanced collaborative care model (Archstone Foundation Care Partners Project). As part of an evaluation of the Care Partners Project, 54 key informant interviews and 10 focus groups were conducted from 2015 to 2017. Additionally, more than 80 project-related documents were reviewed. Qualitative thematic analysis was used to code the transcripts and identify prominent themes in the data. Examining clinic and community organisation partnerships in practice highlighted their inherent complexity. The partnerships were fluid and constantly evolving, shaped by a multiplicity of perspectives and values, and vulnerable to unpredictability. Care Partners sites negotiated the complexity of their partnerships drawing upon three main strategies: adaptation (allowing for flexibility and rapid change); integration (providing opportunities for multi-level partnerships within and across organisations) and cultivation (fostering a commitment to the partnership and its value). These strategies provided opportunities for Care Partners collaborators to work with the inherent complexity of partnering. Intentionally acknowledging and embracing such complexity rather than trying to reduce or avoid it, may allow clinic and community collaborators to strengthen and sustain their partnerships.
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Conducta Cooperativa , Depresión/terapia , Atención Primaria de Salud/organización & administración , Asociación entre el Sector Público-Privado/organización & administración , Apoyo Social , California , Grupos Focales , Humanos , Conducta Social , Bienestar Social/estadística & datos numéricos , Estados UnidosRESUMEN
OBJECTIVE: This study's objective was to assess the relationship of empathy in medical office visits to subsequent outcomes of the common cold. METHODS: A total of 350 subjects ? 12 years of age received either a standard or enhanced physician visit as part of a randomized controlled trial. Enhanced visits emphasized empathy on the part of the physician. The patient-scored Consultation and Relational Empathy (CARE) questionnaire assessed practitioner-patient interaction, especially empathy. Cold severity and duration were assessed from twice-daily symptom reports. Nasal wash was performed to measure the immune cytokine interleukin-8 (IL-8). RESULTS: Eighty-four individuals reported perfect (score of 50) CARE scores. They tended to be older with less education but reported similar health status, quality of life, and levels of optimism. In those with perfect CARE scores, cold duration was shorter (mean 7.10 days versus 8.01 days), and there was a trend toward reduced severity (mean area under receiver-operator characteristics curve 240.40 versus 284.49). After accounting for possible confounding variables, cold severity and duration were significantly lower in those reporting perfect CARE scores. In these models, a perfect score also correlated with a larger increase in IL-8 levels. CONCLUSIONS: Clinician empathy, as perceived by patients with the common cold, significantly predicts subsequent duration and severity of illness and is associated with immune system changes.
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Resfriado Común/terapia , Empatía , Evaluación de Procesos y Resultados en Atención de Salud , Pautas de la Práctica en Medicina , Atención Primaria de Salud/métodos , Adulto , Factores de Edad , Actitud del Personal de Salud , Resfriado Común/inmunología , Resfriado Común/patología , Progresión de la Enfermedad , Femenino , Estado de Salud , Humanos , Interleucina-8/aislamiento & purificación , Masculino , Líquido del Lavado Nasal/inmunología , Satisfacción del Paciente , Relaciones Médico-Paciente , Calidad de Vida , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios , Factores de TiempoRESUMEN
BACKGROUND: Collaborative care is an evidence-based program for treating depression in primary care. We sought to expand this model by recruiting clinics interested in incorporating community partners (i.e., community-based organizations (CBO) and/or family members) in the care team. Seven sites implemented evidence-based collaborative care programs with community partners while collecting information on costs of implementing and sustaining programs. METHODS: Sites retrospectively collected data on planning and implementation costs with technical assistance from study researchers. Sites also prospectively collected cost of care activities over a 1-month period once the program was implemented to determine resources needed to sustain programs. Personnel salary costs were adjusted, adding 30% for benefits and 30% for administrative overhead. RESULTS: The programs implemented varied considerably in staffing, involvement of care partners, and allocation of costs. Total planning and implementation costs varied from $39,280 to $60,575. The largest implementation cost category involved workflow development and ranged from $16,325 to $31,375 with the highest costs in this category attributed to the most successful implementation among clinic-CBO programs. Following implementation, cost per patient over the 1-month period ranged from $154 to $544. Ongoing strategic decision-making and administrative costs, which were included in cost of care, ranged from $284 to $2328 for the month. CONCLUSIONS: Sites implemented collaborative care through differing partnerships, staffing, and related costs. Costs to implement and sustain programs developed in partnership are often not collected but are crucial to understanding financial aspects of developing sustainable partnerships. Assessing such costs is feasible and can inform future partnership efforts.
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Continuidad de la Atención al Paciente/economía , Conducta Cooperativa , Depresión/terapia , Planificación en Salud/economía , Grupo de Atención al Paciente/economía , Atención Primaria de Salud/economía , Anciano , Anciano de 80 o más Años , Redes Comunitarias , Familia , Femenino , Humanos , Ciencia de la Implementación , Masculino , Persona de Mediana Edad , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , WashingtónRESUMEN
PURPOSE: Opioid use disorder (OUD) is a medical condition that is effectively treated with medications. A major challenge in breaking the cycle of OUD and related illegal activity is seamlessly introducing medications for opioid use disorder (MOUD) as individuals leave jail or prison. We examined the feasibility of a pilot intervention to link participants to ongoing MOUD and psychosocial supports following release from custody. METHODS: The study enrolled adults with a history of OUD released from Washington State prisons to Department of Corrections (DOC) community supervision. Participants were randomized to the study intervention or comparison group. The intervention consisted of education on OUD and available treatments, support with individualized treatment decision making, and continued care navigation for 6 months to facilitate linkage to chosen treatments. Participants randomized to the control condition received referral to services in the community from their community corrections officers. A care navigation activity log documented intervention participants' intervention engagement, service utilization, and needs. Follow-up interviews were conducted at 1 and 6 months to assess satisfaction with the intervention. RESULTS: Fifteen participants were enrolled. All were male, most were white (86.6%) and the average age was 36.9 years. The majority (14 of 15 participants) were near-daily heroin users with severe OUD prior to incarceration. Of the seven intervention participants, two wished to start medications immediately. Three participants reported starting buprenorphine or methadone in the subsequent follow-up period, with or without social support and/or outpatient counseling, and three reported enrolling in social support and/or outpatient counseling without medications. Participants who received the intervention reported high satisfaction. We discuss barriers and facilitators to study implementation. CONCLUSION: An intervention to link participants to ongoing MOUD and psychosocial supports following release from prison had broad acceptability among participants and was feasible to implement among those recruited; however, enrollment was much lower than anticipated and the study intervention did not demonstrate the intended effect to facilitate use of MOUD immediately post-release in this small sample of participants. Given recent research showing benefits of pre-release medication initiation, the potential added benefits of this two-part intervention should be studied in systems that initiate MOUD prior to release.
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Several barriers complicate access to psychotherapy for depression, including time commitment, location of services, and stigma. Digital treatment has the potential to address these barriers, yet long term use of digital psychotherapy is poor. This paper presents data from a mixed-methods, online survey to document concerns patients with depression face when given the choice of in-person psychotherapy and digital psychotherapy. Participants were 164 adults living in the United States who had previously used or considered psychotherapy for depression. Rural-dwelling and racial/ethnic minority (Native American, African American, and Spanish-speaking) respondents were purposively sampled. Participants were asked their preferences for and opinions about four treatment modalities: self-guided digital, peer-supported digital, expert-guided digital, or in-person psychotherapy. Less than half (44.5%) of participants preferred in-person psychotherapy, 25.6% preferred self-guided digital treatment, 19.7% preferred expert-guided digital treatment, and 8.5% peer-supported digital treatment. Principal themes extracted from qualitative analysis centered on the efficacy of digital treatment, access to digital treatment, concerns about peer-supported care, confidentiality and privacy concerns, preference for in-person treatment, skepticism about self-guided therapy, and the impact of social anxiety on the use of video-chat based care. Future development of digital psychotherapy will need to address concerns regarding efficacy, privacy, data security, and methods to enhance motivation to use these treatments.
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PURPOSE: Rural areas persistently face a shortage of mental health specialists. Task shifting, or task sharing, is an approach in global mental health that may help address unmet mental health needs in rural and other low-resource areas. This review focuses on task-shifting approaches and highlights future directions for research in this area. METHODS: Systematic review on task sharing of mental health care in rural areas of high-income countries included: (1) PubMed, (2) gray literature for innovations not yet published in peer-reviewed journals, and (3) outreach to experts for additional articles. We included English language articles published before August 31, 2013, on interventions sharing mental health care tasks across a team in rural settings. We excluded literature: (1) from low- and middle-income countries, (2) involving direct transfer of care to another provider, and (3) describing clinical guidelines and shared decision-making tools. FINDINGS: The review identified approaches to task sharing focused mainly on community health workers and primary care providers. Technology was identified as a way to leverage mental health specialists to support care across settings both within primary care and out in the community. The review also highlighted how provider education, supervision, and partnerships with local communities can support task sharing. Challenges, such as confidentiality, are often not addressed in the literature. CONCLUSIONS: Approaches to task sharing may improve reach and effectiveness of mental health care in rural and other low-resource settings, though important questions remain. We recommend promising research directions to address these questions.
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Agentes Comunitarios de Salud/provisión & distribución , Conducta Cooperativa , Servicios de Salud Mental/provisión & distribución , Calidad de la Atención de Salud/normas , Agentes Comunitarios de Salud/estadística & datos numéricos , Humanos , Servicios de Salud Mental/estadística & datos numéricosRESUMEN
OBJECTIVES: Members of racially and ethnically diverse groups have been persistently underrepresented in biomedical research in general, possibly due to mistrust with the medical and research community. This article describes the perceptions, understandings, and expectations of Alaska Native people about research involving the collection and storage of biological specimens. STUDY DESIGN: Stratified focus groups. METHODS: Twenty-nine focus groups with Alaska Native people (n = 178) were held in 14 locations using a semi-structured moderator guide. ATLAS.ti was used for thematic analysis through iterative readings and coding. Alaska Native peoples' perceptions, understandings, and expectations of researcher beneficence, informed consent processes, and provision of research findings were elicited. RESULTS AND CONCLUSIONS: Alaska Native people desired extensive disclosure of information beyond that typically provided in consent and results dissemination processes. Information germane to the motivation and intent of researchers and specifics of specimen storage and destruction were specifically requested. A clear and extensive process of informed consent and continued improvements in sharing results may enhance the transparency of research intent, conduct, and use of obtained results among Alaska Native people. Meeting expectations may improve relationships between researchers and the Alaska Native population which could result in increased research participation. Our findings offer a guide for researchers and communities when planning and implementing research with biological specimens.