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1.
Cult Health Sex ; : 1-18, 2024 Oct 01.
Article in English | MEDLINE | ID: mdl-39351927

ABSTRACT

Queerphobia is defined as society's negative attitude towards LGBTQIA + people, translating into structures that marginalise LGBTQIA + people and contribute to health inequities that cause real harm and can be understood as structural violence. The purpose of this article is to explore what historically marginalised youth in a youth participatory action research (YPAR) project characterise as the big picture issues affecting the lives of LGBTQIA + youth. We used participatory arts-based methods to conduct community and identity building, define research questions and photo prompts, conduct data collection, engage in group thematic analysis, and make recommendations at the state policy level. We also conducted individual semi-structured interviews with participants. Our findings can be grouped into three main themes: LGBTQIA + youth may feel it is safer to remain closeted; queerphobia perpetuates housing instability; and queerphobia functions as a structural barrier to social services. Youth also developed state level policy recommendations to address the structural issues causing harm to LGBTQIA + youth health. Recommendations included increasing access to affordable housing and LGBTQIA + inclusive foster and group homes, and advocating for government-funded LGBTQIA + specific healthcare practices for LGBTQIA + youth. More youth-driven data are needed that centre those directly impacted by structural violence and associated health outcomes.

2.
Front Public Health ; 12: 1407726, 2024.
Article in English | MEDLINE | ID: mdl-39351035

ABSTRACT

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.


Subject(s)
Clinical Trials as Topic , Community-Based Participatory Research , Trust , Humans , Research Design , New York City
3.
Front Dement ; 3: 1426019, 2024.
Article in English | MEDLINE | ID: mdl-39351041

ABSTRACT

Background: Patient and Public Involvement and Engagement (PPIE) is still underutilised in both dementia research and corresponding dissemination activities. Aim: To describe the methods, format, and lessons learned in co-creating and co-producing a dissemination strategy for a research project focused on establishing patient-centred outcome measures into routine palliative community care for persons living with dementia (PLWD) and their informal carers. Materials and methods: A participatory, hybrid-format workshop was conducted to co-create the dissemination strategy with a PPIE group. A video presentation of findings and a list of prompts shared prior to the workshop were used to elicit views on dissemination strategies and knowledge translation. The workshop was followed up with a survey to consolidate the dissemination strategy. Workshop minutes and survey responses were analysed using qualitative thematic analysis. Results: 22 participants from our diverse PPIE group attended the workshop. Two major themes emerged: (a) Knowledge translation: building bridges between research and practise, and (b) Collaboration and dissemination: everyone's voice is needed. Participants suggested critical changes to dissemination methods and materials. Successful knowledge translation depends on a strong evidence base. For this, materials need to be tailored to specific audiences. Everyone's voice needs to be integrated through co-production in dissemination activities by PPIE members to influence societal change. Tailored dissemination activities within a dissemination strategy were co-created spanning all phases of the research cycle. Discussion: Informing and educating the public and policymakers about the needs of PLWD relies on disseminating and fostering knowledge translation throughout all phases of the research cycle.

4.
Front Public Health ; 12: 1416586, 2024.
Article in English | MEDLINE | ID: mdl-39386958

ABSTRACT

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.


Subject(s)
Black or African American , Counseling , Preconception Care , Humans , Female , Pilot Projects , Southeastern United States , Male , Pregnancy , Adult , Program Development
5.
J Healthy Eat Act Living ; 4(2): 79-91, 2024.
Article in English | MEDLINE | ID: mdl-39372063

ABSTRACT

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.

6.
Afr J Disabil ; 13: 1495, 2024.
Article in English | MEDLINE | ID: mdl-39364204

ABSTRACT

Background: Digital stories have been shown to be effective in sharing information. The Partnerships for Inclusive Research and Learning (PIRL) was a 4-year international participatory research project focussed on the digital divide in inclusive research. Objectives: Members of PIRL share their experience of using digital storytelling to get key messages from the project to a wide range of people. Method: Members of PIRL were invited to develop digital stories and create project-specific guidelines for digital story development. Seven people participated in workshops given by experts, read literature, watched digital stories and discussed how to create digital stories. Results: The group created six digital stories, each one addressing a different aspect related to disability-inclusive research, with many having a focus on Africa and the creation of credible African evidence. The importance of assisting community members to think about and support research and evidence creation was one of the goals of the project. The videos provide an avenue to share insights about disability-inclusive development research. Group members stated that being part of the process significantly improved their understanding of translating evidence into formats that are more understandable. Conclusion: Creating digital stories requires commitment, a significant amount of time, access to digital tools, and financial resources. Working collaboratively on this project was not only meaningful but also encouraged positive working relationships and fostered critical thinking. Contribution: This article contributes to a better understanding of ways in which digital storytelling can be used in knowledge-sharing strategies to promote disability inclusion.

7.
BMJ Open ; 14(10): e086327, 2024 Oct 02.
Article in English | MEDLINE | ID: mdl-39357984

ABSTRACT

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.


Subject(s)
Patient Acceptance of Health Care , Preventive Health Services , Propensity Score , Humans , Female , Male , Singapore , Aged , Patient Acceptance of Health Care/statistics & numerical data , Preventive Health Services/statistics & numerical data , Middle Aged , Community Health Workers , Emergency Service, Hospital/statistics & numerical data , Hospitalization/statistics & numerical data , Community Health Services , Aged, 80 and over
8.
Contemp Clin Trials ; 146: 107705, 2024 Sep 30.
Article in English | MEDLINE | ID: mdl-39357739

ABSTRACT

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.

9.
Women Crim Justice ; 34(3): 227-243, 2024.
Article in English | MEDLINE | ID: mdl-39220344

ABSTRACT

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.

10.
Prev Sci ; 2024 Sep 03.
Article in English | MEDLINE | ID: mdl-39225944

ABSTRACT

Beginning with the successful sequencing of the human genome two decades ago, the possibility of developing personalized health interventions based on one's biology has captured the imagination of researchers, medical providers, and individuals seeking health care services. However, the application of a personalized medicine approach to emotional and behavioral health has lagged behind the development of personalized approaches for physical health conditions. There is potential value in developing improved methods for integrating biological science with prevention science to identify risk and protective mechanisms that have biological underpinnings, and then applying that knowledge to inform prevention and intervention services for emotional and behavioral health. This report represents the work of a task force appointed by the Board of the Society for Prevention Research to explore challenges and recommendations for the integration of biological and prevention sciences. We present the state of the science and barriers to progress in integrating the two approaches, followed by recommended strategies that would promote the responsible integration of biological and prevention sciences. Recommendations are grounded in Community-Based Participatory Research approaches, with the goal of centering equity in future research aimed at integrating the two disciplines to ultimately improve the well-being of those who have disproportionately experienced or are at risk for experiencing emotional and behavioral problems.

11.
Community Health Equity Res Policy ; : 2752535X241273820, 2024 Sep 05.
Article in English | MEDLINE | ID: mdl-39235954

ABSTRACT

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.

12.
Health Res Policy Syst ; 22(1): 119, 2024 Sep 02.
Article in English | MEDLINE | ID: mdl-39223606

ABSTRACT

Citizen science can be a powerful approach to foster the successful implementation of technological innovations in health, care or well-being. Involving experience experts as co-researchers or co-designers of technological innovations facilitates mutual learning, community building, and empowerment. By utilizing the expert knowledge of the intended users, innovations have a better chance to get adopted and solve complex health-related problems. As citizen science is still a relatively new practice for health and well-being, little is known about effective methods and guidelines for successful collaboration. This scoping review aims to provide insight in (1) the levels of citizen involvement in current research on technological innovations for health, care or well-being, (2) the used participatory methodologies, and (3) lesson's learned by the researchers.A scoping review was conducted and reported in accordance with the PRISMA-ScR guidelines. The search was performed in SCOPUS in January 2021 and included peer-reviewed journal and conference papers published between 2016 and 2020. The final selection (N = 83) was limited to empirical studies that had a clear focus on technological innovations for health, care or well-being and involved citizens at the level of collaboration or higher. Our results show a growing interest in citizens science as an inclusive research approach. Citizens are predominantly involved in the design phase of innovations and less in the preparation, data-analyses or reporting phase. Eight records had citizens in the lead in one of the research phases.Researcher use different terms to describe their methodological approach including participatory design, co-design, community based participatory research, co-creation, public and patient involvement, partcipatory action research, user-centred design and citizen science. Our selection of cases shows that succesful citizen science projects develop a structural and longitudinal partnership with their collaborators, use a situated and adaptive research approach, and have researchers that are willing to abandon traditional power dynamics and engage in a mutual learning experience.


Subject(s)
Citizen Science , Community Participation , Humans , Delivery of Health Care , Inventions , Community-Based Participatory Research , Cooperative Behavior
13.
Sci Rep ; 14(1): 20477, 2024 09 03.
Article in English | MEDLINE | ID: mdl-39227680

ABSTRACT

Rabies is a neglected disease primarily related to dog-mediated transmission to humans. Accurate dog demographic and dynamic data are essential for effectively planning and evaluating population management strategies when designing interventions to prevent rabies. However, in Thailand, longitudinal survey data regarding dog population size are scarce. A school-based participatory research (SBPR) approach was conducted to survey owned dogs for one year in four high-risk provinces (Chiang Rai, Surin, Chonburi, and Songkhla) of Thailand, aiming to understand dog population dynamics and raise awareness about rabies. 'Pupify' mobile application was developed to collect data on dog population and observe the long-term population dynamics in this study. At the end of the data collection period, telephone interviews were conducted to gain insight into contextual perceptions and awareness regarding both animal and human rabies, as well as the social responsibility of dog owners in disease prevention and control. Among 303 high school students who registered in our study, 218 students reported at least one update of their dog information throughout the one-year period. Of 322 owned dogs from our survey, the updates of dog status over one year showed approximately 7.5 newborns per 100-dog-year, while deaths and missing dogs were 6.2 and 2.7 per 100-dog-year, respectively. The male to female ratio was approximately 1.8:1. Twenty-three students (10%) voluntarily participated and were interviewed in the qualitative study. The levels of rabies awareness and precautions among high-school students were relatively low. The high dropout rate of the survey was due to discontinuity in communication between the researcher and the students over the year. In conclusion, this study focused on using the SBPR approach via mobile application to collect data informing dog population dynamics and raising awareness regarding rabies in Thailand Other engaging platforms (e.g. Facebook, Instagram, Twitter, and other popular applications) is necessary to enhance communication and engagement, thereby sustaining and maintaining data collection. Further health education on rabies vaccination and animal-care practices via social media platforms would be highly beneficial. For sustainable disease control, engaging communities to raise awareness of rabies and increase dog owners' understanding of their responsibilities should be encouraged.


Subject(s)
Dog Diseases , Health Knowledge, Attitudes, Practice , Population Dynamics , Rabies , Dogs , Rabies/prevention & control , Rabies/epidemiology , Rabies/veterinary , Animals , Thailand/epidemiology , Humans , Male , Female , Dog Diseases/prevention & control , Dog Diseases/epidemiology , Dog Diseases/virology , Schools , Adolescent , Community-Based Participatory Research , Students/psychology , Surveys and Questionnaires
14.
Article in English | MEDLINE | ID: mdl-39269531

ABSTRACT

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.

15.
Res Sq ; 2024 Aug 27.
Article in English | MEDLINE | ID: mdl-39257986

ABSTRACT

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.

16.
BMC Prim Care ; 25(1): 338, 2024 Sep 13.
Article in English | MEDLINE | ID: mdl-39271996

ABSTRACT

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.


Subject(s)
Community Health Workers , Primary Health Care , Referral and Consultation , Humans , Primary Health Care/organization & administration , Community Health Workers/organization & administration , Arizona , Mass Screening/methods , Professional Role , Risk Assessment
17.
Article in English | MEDLINE | ID: mdl-39279135

ABSTRACT

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.

18.
BMJ Open ; 14(8): e085532, 2024 Aug 31.
Article in English | MEDLINE | ID: mdl-39298130

ABSTRACT

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.


Subject(s)
Case Management , Mental Disorders , Quality of Life , Humans , Mental Disorders/therapy , Longitudinal Studies , Family/psychology , Japan , Community Mental Health Services , Male , Female , Patient Care Team , Research Design , Community-Institutional Relations
19.
Article in English | MEDLINE | ID: mdl-39259934

ABSTRACT

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.

20.
Health Expect ; 27(5): e70030, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39285634

ABSTRACT

INTRODUCTION: As countries adapted their disaster responses to the COVID-19 pandemic, South Africa responded with an alert-level risk approach based on epidemiological principles that impacted all societal levels. We explored the everyday experiences of people in Cape Town whose basic needs were met and who could report on the realities of the COVID-19 pandemic control. Gaining insight into their perspectives contributes to knowledge that can inform policies and practices for managing future public health crises. METHODS: Community-Based Participatory Research principles guided the design and a series of facilitated dialogues with 18 research participants. The thematic analysis was deepened through two colloquiums with members of an overarching research consortium and a participant reflection workshop. FINDINGS: The pandemic impacted individuals, their interpersonal relationships, workplaces and communities, leading to societal processes such as stigma, virtue signalling and the subversion of mandates. The public health response had mixed reactions, with useful information about preventive measures being diluted by COVID-19 denialism and fake news. Health and other authorities were frequently perceived as out of touch with, and unresponsive to, the everyday realities of local communities. CONCLUSIONS: Our study demonstrates the connectedness of people and the need to maintain and re-establish severed connections. A holistic approach to health care and promotion from social determinants of health and a community-engaged perspective may significantly increase the outcomes of public health responses. PARTICIPANT AND PUBLIC CONTRIBUTION: People with everyday experience of the COVID-19 pandemic-including community members, healthcare workers, case managers, carers and researchers-collaborated on the study design, interview schedule, data interpretation, analysis and refinement of this article.


Subject(s)
COVID-19 , Community-Based Participatory Research , Social Determinants of Health , Humans , COVID-19/prevention & control , COVID-19/epidemiology , COVID-19/psychology , South Africa , Female , SARS-CoV-2 , Male , Pandemics , Adult
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