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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.

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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.

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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.

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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.

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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.

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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.

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BACKGROUND: The Elders Mentoring Program (EMP) is part of a strengths-based community-based participatory research partnership with the Cree communities of Maskwacîs, Alberta, Canada. The EMP objective is to promote maternal and child health through traditional Cree teachings and support from community Elders to pregnant women and their partners. During the COVID-19 pandemic, the Elders decided to shift the program to an online format in early 2021. The Elders continued to offer mentorship to program participants virtually by Zoom and telephone, and online workshops. The objective of this study was to qualitatively explore the experiences of women that took part in the virtual EMP. METHODS: We utilized qualitative description as our method, informed by our overarching community-led research partnership. Semi-structured phone interviews were conducted by Maskwacîs research assistants (RAs) with 11 women who participated in the virtual program. Interviews were conducted between December 2021 and June 2022. The participants were asked about their perceptions of the program and its benefits. The interviews were recorded, transcribed, and coded by four RAs using thematic analysis. RESULTS: Although cultural teachings are traditionally offered in person, the shift to the virtual platform was greatly appreciated by all the women. Technology can be a useful tool for cultural teachings and language to be shared among community members when they cannot be physically together. Four main themes emerged from the data, representing the participants' experiences, and learning through their interactions with the Elders from the EMP. The themes are: Ohpikihâwasowin (grounding and guiding on the path to be a healthy parent); Indigenous ways of healing; On the path of cultural learning; and Identity for self and baby. CONCLUSION: The virtual adaptation of the EMP allowed a space for Elders to offer support to women living in and out of the community to provide guidance with their pregnancies and into motherhood. The workshops and one-on-one calls allowed for cultural revitalization which is critical for Indigenous well-being. All the participants found that the teachings and interactions positively impacted their pregnancy and parenthood. Overall, the virtual program demonstrated a venue for intergenerational healing and resilience.

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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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The intersectional risks of children in United States immigrant communities include environmental exposures. Pesticide exposures and their biological outcomes are not well characterized in this population group. We assessed pesticide exposure and related these exposures to DNA double-strand breaks (DSBs) in Latinx children from rural, farmworker families (FW; N = 30) and from urban, non-farmworker families (NFW; N = 15) living in North Carolina. DSBs were quantified in hair follicular cells by immunostaining of 53BP1, and exposure to 72 pesticides and pesticide degradation products were determined using silicone wristbands. Cholinesterase activity was measured in blood samples. DSB frequencies were higher in FW compared to NFW children. Seasonal effects were detected in the FW group, with highest DNA damage levels in April-June and lowest levels in October-November. Acetylcholinesterase depression had the same seasonality and correlated with follicular DNA damage. Organophosphate pesticides were more frequently detected in FW than in NFW children. Participants with organophosphate detections had increased follicular DNA damage compared to participants without organophosphate detection. Follicular DNA damage did not correlate with organochlorine or pyrethroid detections and was not associated with the total number of pesticides detected in the wristbands. These results point to rural disparities in pesticide exposures and their outcomes in children from vulnerable immigrant communities. They suggest that among the different classes of pesticides, organophosphates have the strongest genotoxic effects. Assessing pesticide exposures and their consequences at the individual level is key to environmental surveillance programs. To this end, the minimally invasive combined approach used here is particularly well suited for children. Supplementary Information: The online version contains supplementary material available at 10.1007/s12403-023-00609-1.

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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.

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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.

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BACKGROUND: Palliative care is seldom integrated in healthcare in fragile, conflict affected and vulnerable settings with significant refugee populations. AIM: This study aimed to evaluate the integration of palliative care into a fragile, conflict affected and vulnerable community in Northern Uganda. DESIGN: Consecutive Rapid Participatory Appraisals were conducted to evaluate the integration of palliative care in Adjumani District. The first established a baseline and the second, 4 years later, evaluated progress. Data collection included documentary review, key informant interviews and direct observation. SETTING/PARTICIPANTS: A rural district in Uganda with equal numbers of refugees and host populations living side-by-side. 104 key informants were interviewed, and practice observed in 11 health facilities. RESULTS: At baseline, palliative care was not routinely integrated in the health system. Barriers included health system challenges, cultural beliefs, understanding and trust, mental health issues, gaps in palliative care provision, the role of the community and beliefs about illness impacted care with the village health teams being a trusted part of the health system. Following integration activities including training, mentorship and community sensitisation, the repeat rapid appraisal after 4 years showed a significant increase in palliative care delivery. New themes identified included increased provision of palliative care, the impact of training and community engagement and ownership of palliative care. CONCLUSION: Community engagement and participation, training interventions and referral pathways enabled the integration of palliative care. Rapid Participatory Appraisal provides a useful framework to evaluate activities aimed at integration of palliative care in a community.

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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.

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BACKGROUND: Asthma reliever medication access is critical, especially in schools. Policies that "stock" reliever inhalers in schools provide failsafe medication access. This research aims to understand barriers and facilitators to Illinois stock inhaler policy implementation. METHODS: We conducted 18 semi-structured interviews in 2021-2022 with key school-based and non-school-based partners (school administrators, nurses, governmental agencies, and advocacy leaders). Through Atlas.ti, code frequencies compared (Fisher's exact test), and a thematic analysis performed. RESULTS: Four themes emerged: facilitators, barriers, program rationale, and process considerations. The common facilitators were "Finding a provider," having a "Champion," and "Funding". Barriers included "Not enough school nurses," "Pharmacy refusal to fill prescriptions," and "Feeling overwhelmed." All were supportive of the rationale for stock inhalers. Non-school-based informants (p < .01) were more likely to mention medication donations, while school staff reported having enough nurses as a facilitator (p < .01). School staff reported concerns about children with asthma not having their medication significantly more than other partners (p = .02). IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY: Our analysis revealed that school partners recognize the value of stock inhalers. Barrier mitigation to support the funding, prescription access and processing, and training are essential to success of stock inhaler programming. Multilevel collaborative efforts through coalitions could be a potential solution.

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BACKGROUND:  Participating in surveys can shape the perception of participants related to the study topic. Administering a vaccine hesitancy questionnaire can have negative impacts on participants' vaccine confidence. This is particularly true for online and cross-cultural data collection because culturally safe health education to correct misinformation is typically not provided after the administration of an electronic survey. OBJECTIVE:  To create a culturally safe, online, COVID-19 vaccine confidence survey for Indigenous youth designed to collect authentic, culturally relevant data of their vaccine experiences, with a low risk of contributing to further vaccine confusion among participants. METHODS:  Using the Aboriginal Telehealth Knowledge Circle consensus method, a team of academics, health care providers, policy makers, and community partners reviewed COVID-19 vaccine hesitancy surveys used in public health research, analyzed potential risks, and created a framework for electronic Indigenous vaccine confidence surveys as well as survey items. RESULTS:  The framework for safer online survey items is based on 2 principles, a first do-no-harm approach and applying a strengths-based lens. Relevant survey domains identified in the process include sociodemographic information, participants' connection to their community, preferred sources for health information, vaccination uptake among family members and peers, as well as personal attitudes toward vaccines. A total of 44 survey items were developed, including 5 open-ended items to improve the authenticity of the data and the analysis of the experiences of Indigenous youth. CONCLUSIONS:  Using an Indigenous consensus method, we have developed an online COVID-19 vaccine confidence survey with culturally relevant domains and reduced the risk of amplifying misinformation and negative impacts on vaccine confidence among Indigenous participants. Our approach can be adapted to other online survey development in collaboration with Indigenous communities.

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BACKGROUND: The number of seasonal workers in the agricultural sector in France is increasing and their working conditions are difficult and disgraceful. While they have been shown in various studies to be subject to processes that result in them being unable to act on occupational health, some of them, mobilized online, have formed a collective whose is permitted them to develop collective actions. OBJECTIVES: Our article aims to describe this online collective and how the power to act emerged from the discussions. The purpose it's also to determine how the functioning of these groups fosters the expression of a collective point of view and the achievement of goals that is not attained elsewhere. METHODS: We carried out a collaborative research online with a collective of seasonal workers, which consisted in following and taking part in discussions about conditions at work and outside of work, using an instant messaging tool. The results of this collaborative research, included testimonies registration and co-produced with seasonal workers, has been analyzed mobilizing A. Sen's capabilities approach. RESULTS: During their online discussions, the seasonal workers allow themselves to share the situations of injustice they are subject to with the other members. Here, we present their output and collective actions which were made possible by the mobilization of the resources of some of their members or by collaborating with other actors. CONCLUSIONS: In spite of the remarkable conversion factors made available through this collective action online, certain "failures" show that in order for these workers to have better access to their rights, effective support by public policy is indispensable.

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PURPOSE: The Aboriginal Families Study is a prospective, intergenerational cohort study with well-established Aboriginal governance arrangements and community partnerships to support all research processes including data collection, interpretation and knowledge translation. PARTICIPANTS: 344 Aboriginal and Torres Strait Islander children born in South Australia between July 2011 and June 2013 and their mothers and other primary caregivers. Two waves of survey data collection have been undertaken: early in the first year postpartum and when the study children were aged 5-8 years. Children participated in direct developmental assessments of their cognitive, speech and language development at 5-8 years of age. Social and cultural determinants of health and well-being have been assessed at each wave of data collection. FINDINGS TO DATE: Publications and policy briefs to date focus on social determinants of women's and children's physical and mental health; identifying gaps in access to pregnancy, postnatal, primary, specialist and allied healthcare; and evidence that Aboriginal-led services in South Australia have improved women's experiences and access to antenatal care. FUTURE PLANS: Wave 3 follow-up is planned as the study children reach 14-16 years of age. Longitudinal follow-up of women and children in the cohort will generate new knowledge about factors promoting children and young people's social and emotional well-being. Our goal is to build a stronger understanding of the potential for key domains of social and emotional well-being (eg, connection to community, family and kin, country and spirituality) to buffer the impacts of social determinants of health, including intergenerational trauma and social inequity.

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Black women are sorely underrepresented in studies of Alzheimer's disease and related dementias (ADRD) despite higher rates of ADRD diagnoses than in non-Hispanic White women. There are many reasons for underrepresentation, including medical mistrust, limited access to clinical studies, and restrictive study inclusion criteria. These pervasive barriers to research participation are often not considered during study development and, if eventually thought of tend to be after the fact. Community-engaged research (CER) approaches are an effective method for reducing participation barriers. This article describes how CER approaches were used to develop the Black Women Inflammation and Tau Study (BWITS), a prospective study to identify biopsychosocial risk factors for ADRD in Black women. Guidelines discussed here for future ADRD research in diverse populations are informed by Community-Based Participatory Research (CBPR), the National Institute on Minority Health and Health Disparities (NIMHD), and the Patient-Centered Outcomes Research Institute (PCORI). HIGHLIGHTS: Understand the historical tragedies related to medical practices and research designs that may contribute to the underrepresentation of Black Americans in research studies today. Highlight community-engaged research approaches that effectively reduce participation barriers in minoritized groups. Review Community-Based Participatory Research, National Institute of Minority Health and Health Disparities, and the Patient-Centered Outcomes Research Institute guidelines for conducting research with minoritized communities. Describe using the three frameworks to inform the study development protocol for the Black Women Inflammation and Tau Study. Conclude by offering study design considerations that we hope can be a helpful starting point for others conducting research with minoritized communities.

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Research on sexual and gender minority (SGM) and domestic violence/sexual assault (DV/SA) is needed given that SGM people are at elevated risk of experiencing DV/SA and accessing inclusive and affirming services from DV/SA community agencies poses challenges for SGM survivors. Community-based participatory research (CBPR) is emerging as a valuable methodological tool in this area, yet few CBPR studies focus on DV/SA among SGM people. In the current paper, we present a case study of a CBPR study conducted in collaboration with SGM survivors of DV/SA, as well as community stakeholders (i.e., DV/SA agency staff and providers). More specifically, we make six recommendations to address CBPR study challenges specifically focused on SGM DV/SA, including (a) integrating positionality throughout every step of the research process, (b) establishing rapport with community partners early in the process, (c) engaging external experts in conducting research related to SGM DV/SA to enhance community-research partnerships, (d) ensuring diverse identities are represented within the study team, (e) developing clear, co-defined feedback and communication guidelines with a Survivor Advisory Board (SAB), and (f) implementing an SAB engagement/retention plan. We also provide concrete examples from our CBPR case study to illustrate each recommendation. These recommendations may enhance the impact of conducting CBPR that seeks to promote recovery from DV/SA among SGM via practices for sustainable community partnerships and linkage-to-care efforts for SGM survivors.

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Recognizing the real-life impact of racial stress on physical and psychological health is vital for creating impactful health promotion interventions among African American families. Despite the known link between racial stress and poor physical health outcomes, no existing intervention to date has targeted stress management strategies to buffer racial stress and build positive health behaviors among African American families. The current study outlines the lessons learned throughout the development of the Linking Exercise for Advancing Daily Stress (LEADS) Management and Resilience program, a 10-week family-based health promotion, stress management, and resilience intervention that aimed to improve physical activity, healthy eating, and well-being among African American adolescents and parents. We highlight the evolution of the LEADS intervention from a health promotion and stress management intervention to a culturally salient health promotion, stress management, and resilience intervention utilizing community-based participatory research strategies. This paper chronicles our systematic journey in making those changes and the lessons we learned along the way. We provide specific recommendations and implications for future health promotion interventions developed for African American families. Overall, we argue for a research orientation that respects cultural and racial contexts, embraces diversity within research teams and self-reflection, recognizes the heterogeneity among African American populations, and applies strength-based approaches.