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1.
Front Public Health ; 12: 1407726, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39351035

RESUMO

Cultural beliefs, personal experiences, and historic abuses within the healthcare system-rooted in structural racism-all contribute to community distrust in science and medicine. This lack of trust, particularly within underserved communities, contributes to decreased participation in clinical trials and a lack of representation in the data. Open dialogue about community concerns and experiences related to research participation and medical care processes can help build trust and change attitudes and behaviors that affect community health. This protocol outlines an approach to increase trust in science and clinical trials among communities in the Bronx, New York that are typically underrepresented in research data. Bridging Research, Accurate Information and Dialogue (BRAID) is a two-phased, evidence-based community engagement model that creates safe spaces for bilateral dialogues between trusted community messengers, and clinicians and scientists. The team will conduct a series of BRAID Conversation Circles on the topic of clinical trials with local trusted community messengers. Participants will be members of the community who are perceived as "trusted messengers" and can represent the community's voice because they have insight into "what matters" locally. Conversation Circles will be audiotaped, transcribed, and analyzed to identify emergent challenges and opportunities surrounding clinical trial participation. These key themes will subsequently inform the codesign and co-creation of tailored messages and outreach efforts that community participants can disseminate downstream to their social networks. Surveys will be administered to all participants before and after each Conversation Circle to understand participants experience and evaluate changes in knowledge and attitudes about clinical trials, including protections for research participants the advantages of having diverse representation. Changes in motivation and readiness to share accurate clinical trial information downstream will also be assessed. Lastly, we will measure participants dissemination of codesigned science messages through their social networks by tracking participant specific resource URLs of materials and videos posted on a BRAID website. This protocol will assess the effectiveness and adoptability of an innovative CBPR model that can be applied to a wide range of public health issues and has the potential to navigate the ever-changing needs of the communities that surround health systems.


Assuntos
Ensaios Clínicos como Assunto , Pesquisa Participativa Baseada na Comunidade , Confiança , Humanos , Projetos de Pesquisa , Cidade de Nova Iorque
2.
BMJ Open ; 14(10): e086327, 2024 Oct 02.
Artigo em Inglês | MEDLINE | ID: mdl-39357984

RESUMO

OBJECTIVES: Ageing populations present substantial challenges for healthcare systems. Community-based health worker (CHW) interventions for promoting healthy ageing and preventing/managing non-communicable diseases have gained considerable attention in recent years. This study aimed to assess the impacts of a multidomain preventive health initiative delivered by CHWs, specifically the 'My Health Map (MHM)' programme, on participants' health service utilisation using a propensity score matching methodology. DESIGN, SETTING AND PARTICIPANTS: The multidomain MHM programme, which was implemented in Bukit Batok township, encompassed screenings, vaccinations, chronic disease management, counselling and socio-environmental interventions. Individuals, aged ≥40 years old, who received care at Ng Teng Fong General Hospital and were enrolled in the MHM programme constituted the intervention group. Outcomes of the intervention group were compared with a 1:1 propensity-matched comparison group at enrolment and 1-year follow-up. The outcome measures were emergency department (ED) utilisation and hospital admissions. Statistical evaluations were performed using χ2/non-parametric tests and difference-in-difference (DiD) estimation with a bias-adjusted generalised estimating equation (α=0.05). RESULTS: A comparable comparison group was formed with no significant differences in baseline characteristics between groups. Data from a total of 299 MHM participants (mean age 70.7 (SD 9.6); 62.5% women) and 299 matched comparisons (mean age 72.1 (SD 16.6); 61.5% women) were appraised. DiD analysis indicated a significant reduction in ED attendance (-16.7%, p<0.001) and hospital admission (-18.4%, p<0.001) among intervention participants than the comparison participants. CONCLUSIONS: The multidomain MHM programme proved effective in reducing ED attendances and hospital admissions in older adults. CHWs have the potential to serve as change agents in healthcare and should be systematically integrated into preventive health programmes.


Assuntos
Aceitação pelo Paciente de Cuidados de Saúde , Serviços Preventivos de Saúde , Pontuação de Propensão , Humanos , Feminino , Masculino , Singapura , Idoso , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Serviços Preventivos de Saúde/estatística & dados numéricos , Pessoa de Meia-Idade , Agentes Comunitários de Saúde , Serviço Hospitalar de Emergência/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Serviços de Saúde Comunitária , Idoso de 80 Anos ou mais
3.
J Healthy Eat Act Living ; 4(2): 79-91, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39372063

RESUMO

The environments in which we live influence our health behaviors and outcomes. The redevelopment of brownfields sites to health-promoting land uses may provide an array of benefits to individuals and communities, but these impacts can be particularly difficult to assess in rural communities using traditional evaluation approaches. This participatory evaluation aimed to explore the impacts of redeveloping rural brownfield sites into health-promoting land uses. Using a facilitated workshop-based Ripple Effects Mapping process, we evaluated three rural brownfields redevelopment sites across Appalachian portions of EPA Region 3 (mid-Atlantic). Adult members (n=32) of these communities participated in guided reflection on the redevelopment and subsequent impacts. Data were constructed as digital mind maps, then coded to the Community Capitals Framework by two authors coding independently. Member checking was conducted with representative workshop participants. Commonly cited impacts were site improvements, facilitation of social and physical activity, and engaging community identity. The most discussed community capitals were social and built; the least discussed capitals were natural and political. Rural brownfield redevelopment targeting physical activity provides the added benefit of engaging an array of community capitals, ultimately strengthening communities on the whole. Future directions for brownfield redevelopment evaluation are discussed.

4.
Front Public Health ; 12: 1416586, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39386958

RESUMO

Introduction: Racial/ethnic disparities in maternal mortality rates represent one of the most significant areas of disparities amongst all conventional population perinatal health measures in the U.S. The alarming trends and persistent disparities of outcomes by race/ethnicity and geographic location reinforce the need to focus on ensuring quality and safety of maternity care for all women. Despite complex multilevel factors impacting maternal mortality and morbidity, there are evidence-based interventions that, when facilitated consistently and properly, are known to improve the health of mothers before, during and after pregnancy. The objective of this project is to test implementation of pre-conception counseling with father involvement in community-based settings to improve cardiovascular health outcomes before and during pregnancy in southeastern United States. Methods and analysis: This study has two components: a comprehensive needs and assets assessment and a small-scale pilot study. We will conduct a community informed needs and assets assessment with our diverse stakeholders to identify opportunities and barriers to preconception counseling as well as develop a stakeholder-informed implementation plan. Next, we will use the implementation plan to pilot preconception counseling with father involvement in community-based settings. Finally, we will critically assess the context, identify potential barriers and facilitators, and iteratively adapt the way preconception counseling can be implemented in diverse settings. Results of this research will support future research focused on identifying barriers and opportunities for scalable and sustainable public health approaches to implementing evidence-based strategies that reduce maternal morbidity and mortality in the southeastern United States' vulnerable communities. Discussion: Findings will demonstrate that preconception counseling can be implemented in community health settings in the southeastern United States. Furthermore, this study will build the capacity of community-based organizations in addressing the preconception health of their clients. We plan for this pilot to inform a larger scaled-up clinical trial across community health settings in multiple southeastern states.


Assuntos
Negro ou Afro-Americano , Aconselhamento , Cuidado Pré-Concepcional , Humanos , Feminino , Projetos Piloto , Sudeste dos Estados Unidos , Masculino , Gravidez , Adulto , Desenvolvimento de Programas
5.
Int J Circumpolar Health ; 83(1): 2401210, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-39388613

RESUMO

Inuit youth in Nunavut (NU) are resilient but face a protracted suicide crisis. The SPARX serious game and e-intervention, developed originally in New Zealand, teaches youth cognitive behavioural therapy (CBT) skills to ameliorate stress and depression. Inuit youth in NU reviewed and culturally adapted SPARX and an existing wellness outcome measure for Inuit. One hundred and twenty-one youth, aged 13 to 24, across NU then tested, played, and evaluated I(nuit)-SPARX, showing improvement in several areas of wellbeing post-play. Youth completed a CBT skills survey, engaged in sharing circles to assess CBT skill retention, and shared their thoughts about the usefulness and cultural fit of I-SPARX with Inuit Qaujimajatuqangit (IQ). Communication Skills, Listening Skills, and Problem Solving emerged as the most helpful learned CBT skills, and NU youth provided real-world examples of using I-SPARX skills to support their mental wellness. Several principles of IQ were exemplified and upheld in the content of the adapted SPARX tool and the process of the project as a whole. Empirically grounded, asynchronous e-tools, developed in collaboration with Inuit communities to ensure cultural specificity, may support psychological wellness in communities where mental health resources are scarce.


Assuntos
Terapia Cognitivo-Comportamental , Inuíte , Humanos , Adolescente , Masculino , Inuíte/psicologia , Feminino , Nunavut , Adulto Jovem , Saúde Mental/etnologia , Depressão/etnologia , Depressão/terapia , Jogos Recreativos/psicologia , Estresse Psicológico/etnologia , Estresse Psicológico/terapia , Prevenção do Suicídio , Promoção da Saúde/organização & administração
6.
BMJ Open ; 14(10): e081978, 2024 Oct 10.
Artigo em Inglês | MEDLINE | ID: mdl-39389602

RESUMO

INTRODUCTION: Youth participatory evaluation is one model for monitoring global outcomes and assessing interventions to improve young people's health equity and well-being while embracing principles of participation and empowerment. Little is known about the use of this approach in practise. This scoping review will identify and synthesise descriptions of how youth participatory evaluation is enacted, to what extent it occurs, and describe the relationship between context and inclusion. METHODS AND ANALYSIS: Scoping review methods will adhere to those outlined by Arksey and O'Malley. The study will also follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. The review will use publicly available evaluation reports (grey literature) for programmes funded by the US National Science Foundation through the Advancing Informal science, technology, engineering and mathematics (STEM) Learning programme and whose reports are archived in the repository hosted by the Reimagining Equity and Values in Informal STEM education (REVISE) Center. This scoping review is limited to education, one of the domains of the social determinants of health, more precisely STEM education, due to the report publication parameters set by the REVISE Center repository. A research team member will download citations for and PDFs of reports. These citations and reports will be managed using Zotero and exported to Covidence, a web-based program designed to manage systematic and scoping reviews. Evaluation report selection will occur in a two-step process by trained coders with clear criteria. Inclusion criteria will include: (1) report is for an evaluation study; (2) evaluation has a focus on young people, aged 10-24; (3) evaluation is for a programme serving young people, aged 10-24; and (4) report written and uploaded to the REVISE Center repository between 2017 and 2022. All reports hosted on the REVISE Center repository are based in the USA and written in English. Data charting will also be done by trained coders and facilitated by Covidence and a codebook. Several procedures will be used to uphold rigour and consistency during this process. Data analysis will be done with Dedoose. ETHICS AND DISSEMINATION: Human subjects research approval will not be required. This scoping review will rely on publicly available evaluation reports. No human research participants will be involved in this review. Findings will be shared through dissemination strategies, such as peer-reviewed journals, international and national conferences, and social media affiliated with academic institutions and professional associations. STUDY REGISTRATION: This study is preregistered on Open Science Framework (https://osf.io/23jdx/). Registration DOI: https://doi.org/10.17605/OSF.IO/K6J98.


Assuntos
Determinantes Sociais da Saúde , Humanos , Adolescente , Projetos de Pesquisa
7.
Contemp Clin Trials ; 146: 107705, 2024 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-39357739

RESUMO

INTRODUCTION: The Republic of the Marshall Islands (RMI) is an independent nation and a member of the United States (US) Affiliated Pacific Islands through a Compact of Free Association. Health disparities in the RMI are striking, with high rates of type 2 diabetes mellitus (T2DM). The International Diabetes Federation has documented age-adjusted prevalence of T2DM at 23.0 %, compared to the US (13.2 %) and globally (9.8 %). T2DM has a devastating impact on patients and their families. METHODS: The purpose of this article is to present the study protocol for the fully powered two-arm cluster randomized controlled trial using a wait-list control to evaluate the effectiveness of a Family Diabetes Self-Management Education and Support (Family DSMES) program when delivered in a group setting by community health workers (CHWs) in faith-based organizations (FBOs) in the RMI. The study used a community engaged approach, and the study protocol includes adaptations based on the results of our one-arm pilot study. SUMMARY: This study will provide new and innovative information on the effectiveness of Family DSMES delivered in a group setting by CHWs in FBOs in the RMI. The knowledge gained from this research will inform DSMES interventions conducted with Marshallese and other Pacific Islander communities, as well as DSMES interventions conducted in other low-resource countries.

8.
Heliyon ; 10(18): e37610, 2024 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-39347398

RESUMO

The study investigates cultural heritage conservation through community-based participatory research, focusing on preserving the Khulubvi Traditional Temple. It addresses challenges from religious, societal, and economic changes and the importance of integrating heritage into education. It emphasizes technology's role in maintaining sacred narratives. Qualitative methods, such as interviews and thematic analysis, reveal community efforts and modern challenges. The study concludes with a call to embed heritage in formal education and highlights the community's crucial role in cultural legacy, contributing to the discourse on heritage preservation.

9.
BMJ Open ; 14(9): e083454, 2024 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-39306348

RESUMO

BACKGROUND: Refugees resettled in Australia may experience significant physical, mental and emotional health issues on arrival and difficulty accessing mainstream healthcare that often demands specialised services. It is not known if and how refugee health needs and service use change over time and generations, how this compares with the broader Australian population and what level of resourcing is required to maintain specialised services. There is also a significant knowledge gap concerning the resources and skills of refugees that can be harnessed to sustain the health and well-being of individuals and communities. Such knowledge gaps impede the ability of the health system to deliver responsive, efficient, acceptable and cost-effective care and services and limit the engagement of refugees in the coproduction of these services. METHODS: This study will be the first to provide comprehensive, longitudinal, population-based evidence of refugee health, service use and the accumulated resources or assets related to positive health and well-being (compared with data on deficits, illness and death) across the lifespan and generations. This will enable a comprehensive understanding of the relationships among assets, health status, service gaps and behaviours. We will identify the assets contributing to increased capacities to protect and promote health. This evidence is essential for planning health prevention programmes.This project has three phases: (1) employ national linked datasets to examine the health and social outcomes of refugees in Australia; (2) engage with refugees in a participatory manner to map the social, economic, organisational, physical and cultural assets in their communities and deliver an integrated model of health; and (3) codesign a roadmap of agreed actions required to attain health and well-being in communities and indicators to assess outcomes. ETHICS AND DISSEMINATION: Ethics and procedures-phase I:Ethical approval for phase I was gained from the Australian Bureau of Statistics (ABS) for Person Level Integrated Data Asset microdata (unit record data) via the ABS DataLab and the NSW Population and Health Services Research Ethics Committee (2023ETH01728), which can provide a single review of multijurisdictional data linkage research projects under the National Mutual Acceptance Scheme. This will facilitate approval for the Victorian and ACT datasets. The ABS will be the integrating/linkage authority. The Centre for Health Record Linkage (CHeReL) and the Victorian Data Linkage Unit will prepare a data extract representing all data records from the dataset to provide to the ABS for linkage.Ethics and procedures-phases 2 and 3:Written consent will be obtained from all participants, as well as consent to publish. We have obtained ethical approval from the University of Technology Sydney Medical Research Ethics Committee; however, as we deepen our consultation with community members and receive input from expert stakeholders, we will likely seek amendments to hone the survey and World Café questions. We will also need to provide flexible offerings that may extend to individual interviews and online interactions. DISCUSSION: This innovative approach will empower refugees and put them at the centre of their health and decision-making.


Assuntos
Refugiados , Refugiados/estatística & dados numéricos , Humanos , Austrália , Projetos de Pesquisa , Nível de Saúde , Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde , Estudos Longitudinais
10.
BMJ Open ; 14(9): e084316, 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39260844

RESUMO

INTRODUCTION: Persons after stroke experience limitations in activities of daily living even in the chronic phase. Many patients who had a stroke report mobility limitations with loss of social roles such as reduced gait-related participation. International best-practice recommendations for patients who had a stroke include interprofessional diagnostics as a core element for goal setting and intervention planning to improve social participation. Interprofessional diagnostics has not yet been implemented in Germany. METHODS AND ANALYSIS: The aim is to develop an interprofessional diagnostic toolkit. This will be done in a multi-step process: first, an integrative review is conducted to synthesise the literature. Second, the experiences regarding diagnostics and walking outside is captured in focus groups with persons after stroke, relatives and health professionals. Third, a toolkit for the interprofessional diagnostic process of gait-related-participation will be developed based on the results of the previous steps in a future workshop. Fourth, the results of each work package will be integrated into the iterative development process for evaluation and implementation. All steps will be performed in accordance with the respective reporting guidelines. ETHICS AND DISSEMINATION: This study has been approved by the ethics committee at the Ludwig Maximilians University (LMU), Germany and is overseen by LMU-Medical Institutional Review Board. Written informed consent will be obtained from all participants. Results will be disseminated through knowledge exchange with stakeholders and in peer-reviewed journal publications, scientific conferences, formal and informal reports. Stakeholders, patients and providers will be involved in most steps of the development from the beginning, which will facilitate later implementation at a larger scale. TRIAL REGISTRATION NUMBER: German Register Clinical Trials/Deutsches Register Klinischer Studien DRKS00032389.


Assuntos
Reabilitação do Acidente Vascular Cerebral , Humanos , Alemanha , Reabilitação do Acidente Vascular Cerebral/métodos , Atividades Cotidianas , Grupos Focais , Acidente Vascular Cerebral , Marcha , Participação Social , Limitação da Mobilidade , Projetos de Pesquisa , Caminhada , Relações Interprofissionais
11.
Artigo em Inglês | MEDLINE | ID: mdl-39279135

RESUMO

Although predictive algorithms have been described as the definitive solution to bias in health care, machine learning techniques may also propagate existing health inequities within the community context. However, there may be ways in which machine learning techniques can help community psychologists, public health researchers and practitioners identify patterns in data in a way that empowers improved outcomes. Incorporating community insight in all stages of machine learning research mitigates bias by positioning members of underrepresented communities as the experts of their lived experiences. As community psychologists already prioritize community-based participatory practices, we propose three core guiding principles for a community-engaged participatory model for research using machine learning techniques: shared decision-making, reflexivity and structural humility, and flexibility and adaptability. Guided by these three principles, we emphasize grounding priority setting, problem formation, model assumptions, and interpretation of the resulting algorithmic patterns in the truths born from the lived experiences of people closest to the problem. We also suggest opportunities for bidirectional and mutually empowering partnerships between algorithmic scientists and the communities to which their algorithms will be applied. Inclusion of community stakeholders in all stages of machine learning for health research provides an opportunity to develop algorithms that are both highly effective and ethically grounded in the lived experiences of target populations.

12.
BMJ Open ; 14(8): e085532, 2024 Aug 31.
Artigo em Inglês | MEDLINE | ID: mdl-39298130

RESUMO

INTRODUCTION: Individuals with mental illness and their families often undergo their recovery process in their communities. This study explored the long-term outcome trajectories of individuals and families who received case management services provided by multidisciplinary outreach teams in a community setting. The primary objective of this study was to determine whether trajectories of subjective quality of life (QoL) related to personal recovery were linked to those clinical and societal outcomes and changes in outreach service frequency. METHODS AND ANALYSIS: The protocol of this 10-year multisite cohort study was collaboratively developed with individuals with lived experience of psychiatric disorders who had received services from participating outreach teams, and with family members in Japanese family associations. The participants in the study include patients and their key family members who receive services from 23 participating multidisciplinary outreach teams. The participant recruitment period is set from 1 October 2023 to 30 September 2025. If necessary, the recruitment period may be extended and the number of participating teams may be increased. The study will annually evaluate the following outcomes after participants' initial utilisation of services from each team: QoL related to personal recovery, personal agency, feelings of loneliness, well-being and symptom and functional assessments. The family outcomes encompass QoL, well-being, care burden and family relationships. Several meetings will be held to monitor progress and manage issues during the study. Multivariate analyses with repeated measures will be performed to investigate factors influencing changes in the patients' QoL scores as the dependent variable. ETHICS AND DISSEMINATION: The study protocol was approved by the ethical committee of the National Center of Neurology and Psychiatry (no. A2023-065). The study findings will be reported in peer-reviewed publications and presented at relevant scientific conferences. TRIAL REGISTRATION NUMBER: UMIN-CTR, No. UMIN000052275.


Assuntos
Administração de Caso , Transtornos Mentais , Qualidade de Vida , Humanos , Transtornos Mentais/terapia , Estudos Longitudinais , Família/psicologia , Japão , Serviços Comunitários de Saúde Mental , Masculino , Feminino , Equipe de Assistência ao Paciente , Projetos de Pesquisa , Relações Comunidade-Instituição
13.
Artigo em Inglês | MEDLINE | ID: mdl-39259934

RESUMO

OBJECTIVE: Educational offerings to fill the bioinformatics knowledge gap are a key component to enhancing access and use of health data from the All of Us Research Program. We developed a Train the Trainer-based, innovative training series including project-based learning, modular on-demand demonstrations, and unstructured tutorial time as a model for educational engagement in the All of Us community. MATERIALS AND METHODS: We highlight our training modules and content, with training survey data informing cycles of development in the creation of a 6-module training series with modular demonstrations. RESULTS: We have conducted 2 public iterations of the Train the Trainer (Tx3) Series based on survey feedback while training over 300 registered researchers to access and analyze data on the All of Us Researcher Workbench. DISCUSSION AND CONCLUSION: Future directions of the Tx3 Series include enhanced focus on project-based learning and learner requests for modularity and asynchronous materials access.

14.
J Urban Health ; 2024 Sep 24.
Artigo em Inglês | MEDLINE | ID: mdl-39316308

RESUMO

The Care Block of Bogotá, Colombia, is an urban program that offers services for low-income unpaid caregivers. This study aimed to (i) characterize unpaid caregivers' subjective well-being, mental health symptoms, physical activity levels, and use of public spaces linked to the Care Block; (ii) identify caregivers' perceived built and social environment facilitators and barriers to accessing the Care Block facility; and (iii) document the community-led advocacy process to improve the Care Block program. The quantitative component included a subjective well-being and mental health symptoms survey, and the System for Observing Play and Recreation in Communities (SOPARC) instrument. The qualitative component included the Our Voice citizen science method augmented with portable virtual reality equipment to engage participants in advocacy for changes. Participants (median age of 53 years) dedicated a median of 13.8 h a day to unpaid caregiving, had an average subjective well-being score of 7.0, and 19.1% and 23.8% reported having depression and generalized anxiety symptoms respectively. Caregivers reported that the program fosters their perception of purpose, enjoyment, resilience, and cognitive and emotional awareness. SOPARC evaluation showed that most women engaged in moderate to vigorous physical activity. The caregivers highlighted education, physical activity services, and integration of facilities as facilitators to accessing the Care Block program. Poor quality and lack of sidewalks and roads, limited personal safety, and the risk of pedestrian-vehicle collisions were identified as barriers. Virtual Reality sparked compelling dialogue between participants and stakeholders, allowing stakeholders to reflect on an urban program facilitating unpaid care work.

15.
Aten Primaria ; 57(1): 103077, 2024 Sep 11.
Artigo em Espanhol | MEDLINE | ID: mdl-39265319

RESUMO

Dissemination and Implementation Science focuses on bridging the gap between scientific research and its practical application in the real world. By identifying and promoting effective strategies, the Science of Dissemination and Implementation disseminates and implements evidence-based interventions in healthcare settings, taking into account the needs, barriers, context, resources, and end users. This special article introduces and debates the most recent advances in this field, highlighting key approaches, theoretical frameworks, as well as specific challenges and opportunities applied to primary and community care. Additionally, concrete examples tailored to the Spanish context are presented. Given the nascent state of the use of the Dissemination and Implementation Science in Spain, the authors recommend strategically adopting this approach and its principles in primary and community care to expedite the adoption of effective interventions that promote health.

16.
Artigo em Inglês | MEDLINE | ID: mdl-39269531

RESUMO

Misophonia is a condition involving decreased tolerance and intense responses to specific sounds, often those that are human-generated and repetitive in nature. Misophonia frequently onsets during childhood and is associated with significant distress, impairment, and diminished quality of life. While misophonia research remains nascent and no definitive practice guidelines exist at present, extant studies offer several promising potential avenues in intervention development for adults with misophonia. However, such research is comparatively limited for youth. Before widespread adoption of promising treatments, it is important to consider the potential for harm or non-beneficence that may arise from the mis-informed application of such treatments. In this article, we identify several potential pitfalls within intervention development for pediatric misophonia and provide recommendations to circumvent them. To that end, we focus on the following three topic areas: (a) challenges arising when psychological mechanisms are not considered in intervention development, (b) importation of a cognitive-behavior therapy (CBT) framework for obsessive-compulsive spectrum disorders without nuanced tailoring to misophonia, and (c) neglecting to include individuals with lived experience in the process of intervention development research. Considering these key areas within misophonia intervention development will be critical for upholding beneficence and minimizing harm in treatment of misophonia across the lifespan.

17.
Res Sq ; 2024 Aug 27.
Artigo em Inglês | MEDLINE | ID: mdl-39257986

RESUMO

Background: Integrating patient and community input is essential to the relevance and impact of patient-focused research. However, specific techniques for generating patient and community-informed research decisions remain limited. Here, we describes a novel CASCADE method (Community-Engaged Approach for Scientific Collaborations and Decisions) that was developed and implemented to make actionable, patient-centered research decisions during a federally funded clinical trial. Methods: The CASCADE approach includes 7 key pillars: (1) identifying a shared, specific, and actionable goal; (2) centering community input; (3) integrating both pre-registered statistical analyses and exploratory "quests"; (4) fixed-pace scheduling, supported by technology; (5) minimizing opportunities for cognitive biases typical to group decision making; (6) centering diversity experiences and perspectives, including those of individual patients; (7) making decisions that are community-relevant, rigorous, and feasible. Here, we implemented these pillars within a three-day CASCADE panel, attended by diverse members of a research project team that included community interest-holders. The goal of our panel was to identify ways to improve an algorithm for matching patients to specific types of telehealth programs within an active, federally funded clinical trial. Results: The CASCADE panel was attended by 27 participants, including 5 community interest-holders. Data reviewed to generate hypotheses and make decisions included (1) pre-registered statistical analyses, (2) results of 12 "quests" that were launched during the panel to answer specific panelist questions via exploratory analyses or literature review, (3) qualitative and quantitative patient input, and (4) team member input, including by staff who represented the target patient population for the clinical trial. Panel procedures resulted in the generation of 18 initial and 12 final hypotheses, which were translated to 19 decisional changes. Conclusions: The CASCADE approach was an effective procedure for rapidly, efficiently making patient-centered decisions during an ongoing, federally funded clinical trial. Opportunities for further development will include exploring best-practice structural procedures, enhancing greater opportunities for pre-panel input by community interest-holders, and determining how to best standardize CASCADE outputs. Trial registration: The CASCADE procedure was developed in the context of NCT05999448.

18.
BMC Prim Care ; 25(1): 338, 2024 Sep 13.
Artigo em Inglês | MEDLINE | ID: mdl-39271996

RESUMO

BACKGROUND: Community health workers (CHWs) remain an underutilized resource in social risk diagnostics in the primary care setting. This process evaluation study seeks to assess the role of CHWs in social risk screening, referral, and follow-up through process mapping to identify barriers to the process for future quality improvement efforts. METHODS: Researchers at the Arizona Prevention Research Center (AzPRC) engaged with two Federally Qualified Health Centers (FQHCs) in two of Arizona's major urban areas to evaluate their internal processes for social risk screening and intervention. The Consolidated Framework for Implementation Research (CFIR) was used to direct a process mapping exercise to visually describe the workflow, gaps, and barriers to identifying and addressing social risk. RESULTS: The process unveiled key areas for health system improvements in the community setting, the organizational setting, and in the implementation of social risk screening, referral, and follow-up. Further, process maps highlight the potential resources needed for effective CHW integration to address social risk in the primary care setting. CONCLUSIONS: Our findings demonstrate the importance of organizational tools, such as process mapping, to assist primary care settings in evaluating internal processes for quality improvement in addressing social risk and in effectively integrating the CHW workforce. Subsequent research will evaluate rates of social risk screening, referral, and follow-up within all of Arizona's FQHCs and propose models for CHW integration to address social risk in primary care and strengthen social risk screening reach and effectiveness.


Assuntos
Agentes Comunitários de Saúde , Atenção Primária à Saúde , Encaminhamento e Consulta , Humanos , Atenção Primária à Saúde/organização & administração , Agentes Comunitários de Saúde/organização & administração , Arizona , Programas de Rastreamento/métodos , Papel Profissional , Medição de Risco
19.
Women Crim Justice ; 34(3): 227-243, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39220344

RESUMO

Adverse childhood experiences and workplace trauma exposure are associated with poor health. However, their differential impacts by gender are difficult to assess in studies of organizations with gender imbalances (e.g., law enforcement officers are more likely men whereas social workers are more likely women). Using a community-based participatory research framework, this study examines trauma exposure, mental and physical health, and substance use in an occupationally diverse sample (n = 391). Trauma exposure was high and associated with poor health. Even though women experienced more adversity, they were often more resilient than men. Implications for trauma-informed workplaces are discussed.

20.
Community Health Equity Res Policy ; : 2752535X241273820, 2024 Sep 05.
Artigo em Inglês | MEDLINE | ID: mdl-39235954

RESUMO

According to the life course perspective (LCP), optimal human development and healthy aging are key goals that must start preconceptionally and continue later in life. However, older adult health and family health across generations have received very little attention in maternal and child health (MCH). Community-based participatory research (CBPR) is an important strategy for putting the LCP into action by engaging those communities most affected by health disparities. We conducted six CBPR focus groups using the LCP as the theoretical framework to capture community members' perspectives of risk and protective factors for older adult health. Perceived protective factors for older adults included socialization, support systems, and practicing wellness. Perceived risk factors included caretaking responsibilities, isolation, medical issues, and lack of support. The identified risk and protective factors for older adult health must be considered when developing public health interventions that promote health equity in aging and MCH.

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