Use of All of Us data to increase health literacy and research skills in high school students.

OBJECTIVE: This case study describes how an All of Us engagement project returned value to community by strengthening high school students' capacity to serve as health advocates. MATERIALS AND METHODS: Project activities included health literacy education and research projects on the influence of environmental, societal, and lifestyle factors on community health disparities. The research project involved use of the Photovoice method and All of Us data. At project's end, students presented their research to the community. RESULTS: The project's success was measured by students' participation in the research poster session and comparison of pre- and post-project scores from the Health Literacy Assessment Scale for Adolescent. Data analysis suggests the project succeeded in meeting its goal of increasing students' health literacy. DISCUSSION AND CONCLUSION: Through education and research activities, students learned about community health issues and the importance of participation in medical research programs, like All of Us, to address issues.

Autistic adults in China and the Netherlands: Proxy-reported community integration and life satisfaction.

LAY ABSTRACT: Even though there are about 10 million Chinese autistic individuals, we know little about autistic adults in China. This study examined how well young autistic adults in China integrate into their communities (such as having a job, living independently and having friends) and how satisfied they are with their lives as reported by their caregivers. We compared them to autistic adults with similar characteristics (such as high support needs) from the Netherlands. We included 99 autistic adults in China and 109 in the Netherlands (18-30 years). In both countries, autistic adults were reported to have a hard time fitting into their communities. They often had no work, did not live on their own and had few close friends. Also, in both countries, caregivers reported that autistic adults felt low satisfaction with their life. Chinese adults were less satisfied with their life than Dutch adults, as indicated by their caregivers. This could be because of a lack of support for autistic adults in China, higher parental stress in Chinese caregivers, or general cross-country differences in happiness. Only in the Dutch group, younger compared with older adults fitted better into their communities, and adults without additional psychiatric conditions were reported to have higher life satisfaction. Country was a significant predictor of independent living only, with Dutch participants more likely living in care facilities than Chinese participants. In conclusion, our study shows that autistic adults with high support needs generally face similar challenges in both China and the Netherlands.

The Dynamic Model of Health Assets: a model development.

AIM: Epidemiological research on resistance and resilience can build on models of health developed in health promotion. Nevertheless, these models need to be adjusted to approaches currently employed in epidemiology; namely, included concepts should be easy to operationalize, and links between them should be simple enough to enable statistical modeling. In addition, these models should include both individual and environmental assets. The objective of this study is to consolidate the current knowledge on health assets, adjust them to epidemiological research needs, and propose a new model of health assets for epidemiological studies on health. DESIGN: The conceptual paper was conducted according to the guidelines for the model development. METHODS: The development of the new model was made from the perspective of salutogenesis - the branch of health promotion studying the origins of health. The analysis of literature on health promotion, public health, and positive psychology was conducted to find the links connecting individual and environmental assets. RESULTS: The newly developed Dynamic Model of Health Assets circularly links individual characteristics, actions, environments, and support. Each preceding component of the model contributes to the following one; each component also independently contributes to resistance and resilience. The new model may guide large-scale epidemiological research on resistance and resilience. The model's components are easy to operationalize; the model allows for constructing multilevel models and accounting for the dynamic nature of the relationships between components. It is also generic enough to be adjusted to studying contributors to resistance and resilience to different specific diseases. CONCLUSION: The new model can guide epidemiological studies on resistance and resilience.

Community engagement strategies for population health research with culturally diverse adults.

The purpose of this report is to describe the community engagement research (CEnR) strategies used to implement the Florida Statewide Registry for Aging Studies (FSRAS), a tri-institutional research project conducted during the height of the COVID-19 pandemic. We describe the CEnR strategies used to enroll adults aged ≥ 25 years old self-identifying as African American (AA), Caribbean (CN), or Hispanic/Latinx (H/L) into FSRAS health research studies. The second goal is to report the number of AA, CN, and H/L adults involved in FSRAS and discuss the implications of CEnR strategies used throughout this research. More than 1600 adults aged 25 years or older participated in FSRAS health-related research activities or studies. Specifically, 25 community leaders from throughout Florida served on the FL-SAGE Council, 587 AA, CN, and H/L adults aged ≥ 25 years old participated in listening sessions and completed surveys exploring intergenerational influence, 292 AA, CN, and H/L adults participated in marketing research, and at least 702 adults have enrolled in AgeWell, FSRAS's health registry for persons interested in healthy aging research. Implications are researchers should continue using several CEnR strategies including technology and social media. Examining how the foundational principles of trust and authenticity are maintained when using CEnR strategies in virtual settings is warranted. Research implications are that simultaneously using CEnR strategies to recruit and enroll underrepresented populations into research is most effective although further research is needed to identify which CEnR strategy is most effective for enrolling AA, CN, and H/L older adults in aging research.

Health managers' perspectives of community health committees' participation in the annual health sector planning and budgeting process in a devolved unit in Kenya: a cross-sectional study.

Introduction: health sector planning and budgeting are concerned with identifying priorities that guide budgetary allocation to improve health outcomes. Engaging the community in this process empowers them to manage their own health. Despite the benefits and the availability of legislation and structures to mainstream community participation, their involvement is minimal and marred with challenges. This study, therefore, aimed to examine the level and perspectives of health managers on community health committees´ (CHC) participation in health sector planning and budgeting. Methods: the study utilized a cross-sectional research design, incorporating both quantitative and qualitative research methods. Study participants were involved in planning and budgeting. Quantitative data were collected from 100% (n=170) of health managers, while qualitative data were gathered from 100% (n=3) of county department of health executives and 94% (n=83) of community health committee members. Descriptive statistics were utilized to analyze quantitative data, while qualitative data were analyzed thematically. Results: although 87% of the health managers agreed that community health committee participation is beneficial, only 11% of them were satisfied with their participation, and 54% rated CHC participation as low; furthermore, over 50% of health managers disagreed that Community Health Unit (CHUs) have the necessary skills to effectively participate in the process, that adequate budget and time are allocated for CHC participation, and that feedback about the process is provided to them. Conclusion: the county health department of health should allocate more funds and design sustained capacity-building programs to enhance CHC participation in health sector planning and budgeting.

Community participation disparities among people with disabilities during the COVID-19 pandemic.

PURPOSE: To describe disparities in community participation during the COVID-19 pandemic among people with disabilities. METHODS: Respondents to Phase 3.3 of the COVID Household Pulse Survey (US Census Bureau) were classified by disability status. Risk ratios and risk differences were computed to compare the risk of poor outcomes on economic participation, community service use, and community activities by disability status - both overall (compared to the nondisabled reference) and by race/ethnicity (each subgroup compared to the White nondisabled reference). RESULTS: At least one type of disability was reported by 59.6% of respondents. People with disabilities were more likely to report in-person medical appointments but were at greater risk of poor outcomes across all other outcomes [risk ratio range = 1.01(1.01-1.02) to 1.91(1.80-2.01), risk difference range = 1.0(0.5-1.5) to 13.4(12.6-14.2)]. The disabled Black and disabled Hispanic/Latino groups experienced disproportionately high risk of poor outcomes across all indicators [risk ratio range = 1.0 (1.0-1.1) to 6.1 (5.0-7.1), risk difference range = 3.2 (1.9-4.4) to 33.1 (30.1-35.4)]. CONCLUSIONS: The high number of people reporting disability, along with the notable disparities in community participation outcomes among those reporting disability, suggest the need for expanded rehabilitation services and community supports to enhance participation.

People with disabilities experienced disparities in community participation outcomes during the pandemic, particularly in indicators of economic participation (paid employment, income, and education).Disabled people from racial and ethnic minority groups experienced the most severe disparities in outcomes.Stronger rehabilitation services are critical to address new disability or pandemic-related changes in the experience or severity of existing disability.Stronger community and social supports (employment supports, accessible assistive technology, and safe transportation options) may also reduce the disparities in community participation experienced by people with disabilities.

Engaging communities as partners in health crisis response: a realist-informed scoping review for research and policy.

BACKGROUND: Health is increasingly affected by multiple types of crises. Community engagement is recognised as being a critical element in successful crisis response, and a number of conceptual frameworks and global guideline documents have been produced. However, little is known about the usefulness of such documents and whether they contain sufficient information to guide effective community engagement in crisis response. We undertake a scoping review to examine the usefulness of conceptual literature and official guidelines on community engagement in crisis response using a realist-informed analysis [exploring contexts, mechanisms, and outcomes(CMOs)]. Specifically, we assess the extent to which sufficient detail is provided on specific health crisis contexts, the range of mechanisms (actions) that are developed and employed to engage communities in crisis response and the outcomes achieved. We also consider the extent of analysis of interactions between the mechanisms and contexts which can explain whether successful outcomes are achieved or not. SCOPE AND FINDINGS: We retained 30 documents from a total of 10,780 initially identified. Our analysis found that available evidence on context, mechanism and outcomes on community engagement in crisis response, or some of their elements, was promising, but few documents provided details on all three and even fewer were able to show evidence of the interactions between these categories, thus leaving gaps in understanding how to successfully engage communities in crisis response to secure impactful outcomes. There is evidence that involving community members in all the steps of response increases community resilience and helps to build trust. Consistent communication with the communities in time of crisis is the key for effective responses and helps to improve health indicators by avoiding preventable deaths. CONCLUSIONS: Our analysis confirms the complexity of successful community engagement and the need for strategies that help to deal with this complexity to achieve good health outcomes. Further primary research is needed to answer questions of how and why specific mechanisms, in particular contexts, can lead to positive outcomes, including what works and what does not work and how to measure these processes.

An Equity-Based Research Agenda to Promote Social Inclusion and Belonging for People With IDD.

Having a sense of social inclusion and belonging, typically characterized by our personal relationships and community participation, is the central essence of life for most people, yet it remains elusive for many people with intellectual and developmental disabilities (IDD). This article summarizes the work of a diverse group of researchers and advocates to propose 6 big-picture, equity-based goals to drive future research in the field: (1) understanding the role of intersectionality, (2) understanding intimate relationships, (3) promoting formation of communities of care to support social inclusion, (4) understanding life course trajectories of social inclusion, (5) understanding social inclusion in virtual spaces, and (6) understanding how to promote social inclusion in the entire research process.

Community-Based Intervention for Active Detection and Provision of Single-Dose Rifampicin Post-Exposure Prophylaxis to Household Contacts of Leprosy in Bolivia.

BACKGROUND: To achieve zero leprosy cases in Santa Cruz, Bolivia, we designed a community-based active detection and provision of single-dose rifampicin post-exposure prophylaxis (SDR-PEP) to household contacts with new leprosy patients. METHODS: From July to August 2021, we assessed the current knowledge, attitude, and practices through structured interviews and focus group discussions with community representatives and health staff. This was followed by sensitization sessions, the training of health staff, and the reinforcement of referral mechanisms. Teams, including health staff and community volunteers, visited all new leprosy patients detected in 2021-2023 and household contacts. RESULTS: Among 115 community representatives, knowledge about leprosy etiology was attributed to non-biological factors (74%); fear accounted for 77%, and access to care was perceived as weak (74%), but the outlook was improved by SDR-PEP (80%). Among the 217 health staff interviewed, the programmatic barriers identified were a lack of referral feedback (67%), limited supplies for diagnosis and prevention, and ineffective training (64%). We visited 70 new patients and 258 household contacts. The median age in household contacts was 25 years old; 49% were women, 98% were eligible for SDR-PEP, and all who were eligible accepted it. Those who were non-eligible included one tuberculosis patient and six newly detected leprosy patients (23‱). CONCLUSIONS: A community-based intervention was successful in Santa Cruz, Bolivia. Misbeliefs and a lack of knowledge were identified as barriers. Programmatic components should be reinforced for SDR-PEP extension.

Health equity in urban and rural settings: implementation of the place standard tool in Spain.

The physical, social, and economic characteristics of neighborhoods and municipalities determine the health of their residents, shaping their behaviors and choices regarding health and well-being. Addressing local environmental inequalities requires an intersectoral, participatory, and equity-focused approach. Community participation plays a vital role by providing deeper insights into local contexts, integrating community knowledge and values into processes, and promoting healthier, fairer, and more equitable actions. In recent years, various tools have been developed to assess places and transform them into health-promoting settings. One such tool, the Place Standard Tool (PST), facilitates discussions on Social Determinants of Health grouped into 14 themes, serving as a starting point for local health interventions. In this study, that took place between August 2019 and February 2020, we described the resident's perceptions of two municipalities in the Valencian Community, Spain, using the validated Spanish version of the PST. A mixed-method convergent-parallel design was used to gain a holistic insight into residents' experiences concerning their physical, economic, and social environment. A total of 356 individuals from both municipalities participated in the study through discussion groups, structured interviews, and online survey. Descriptive analysis of the individual questionnaire answers was conducted, and differences between municipalities were explored. Qualitative thematic analysis was conducted on structured interviews and discussion groups. Quantitative and qualitative data were integrated to facilitate their comparison and identify areas of convergence or divergence in the findings. Overall, rural areas received more favorable evaluations compared to urban ones. Public Transport as well as Work and Local Economy were consistently rated the lowest across all groups and contexts, while Identity and Belonging received the highest ratings. In the urban area, additional negative ratings were observed for Traffic and Parking, Housing and Community, and Care and Maintenance. Conversely, Identity and Belonging, Natural Spaces, Streets and Spaces, Social Interaction, and Services emerged as the highest-rated themes overall. In the rural context, positive evaluations were given to Walking or Cycling, Traffic and Parking, Housing and Community, and Influence and Sense of Control. Significant differences (p < 0.01) between urban and rural settings were observed in dimensions related to mobility, spaces, housing, social interaction, and identity and belonging. Our study illustrated the capacity of the PST to identifying aspects within local settings that influence health, revealing both positive and challenging factors. Successful implementation requires appropriate territorial delineation, support from local authorities, and effective management of expectations. Furthermore, the tool facilitated community participation in decision-making about local environments, promoting equity by connecting institutional processes with citizen needs.

Creating Cultural and Lifestyle Awareness About Dementia and Co-morbidities.

Dementia is a major health concern in society, particularly in the aging population. It is alarmingly increasing in ethnic minorities such as Native Americans, African Americans, Hispanics/Latinos, and to some extent Asians. With increasing comorbidities of dementia such as diabetes, obesity, and hypertension, dementia rates are expected to increase in the next decade and beyond. Understanding and treating dementia, as well as determining how to prevent it, has become a healthcare priority across the globe for all races and genders. Awareness about dementia and its consequences such as healthcare costs, and caregiver burden are immediate needs to be addressed. Therefore, it is high time for all of us to create awareness about dementia in society, particularly among Hispanics/Latinos, Native Americans, and African Americans. In the current article, we discuss the status of dementia, cultural, and racial impacts on dementia diagnosis and care, particularly in Hispanic populations, and possible steps to increase dementia awareness. We also discussed factors that need to be paid attention to, including, cultural & language barriers, low socioeconomic status, limited knowledge/education, religious/spiritual beliefs and not accepting modern medicine/healthcare facilities. Our article also covers both mental & physical health issues of caregivers who are living with patients with dementia, Alzheimer's disease, and Alzheimer's disease-related dementias. Most importantly, we discussed possible measures to create awareness about dementia, including empowering community advocacy, promoting healthy lifestyle choices, education on the impact of nutrition, encouraging community participation, and continued collaboration and evaluation of the success of dementia awareness.

Sustainable Participation in Community Health Programs to Promote a Healthy Lifestyle and Prevent and Protect against Dementia among Rural Taiwanese Middle-Aged and Older Adults.

BACKGROUND: Resource and economic constraints limit access to health care in rural populations, and consequently, rates of chronic illnesses are higher in this population. Further, little is known about how rural populations adopt active and healthy lifestyle behavior for dementia prevention. OBJECTIVES: This study aimed to explore the impact of modification in lifestyle behaviors on changes in cognitive function among middle-aged and older adults living in a rural area of Taiwan. DESIGN: In this prospective longitudinal study, changes in lifestyle and cognitive function were compared between the experimental and control groups. SETTING: Six rural community care stations were randomly cluster sampled in southern Taiwan. PARTICIPANTS: A total of 155 participants were enrolled and classified into two groups according to their community activity participation rate (CAPR). The control group (n=68) had a CAPR < 1x/month, and the experimental group (n=87) had a CAPR ≥ 1x/month. MEASUREMENTS: Cognitive function of the participants was measured using the MMSE scale. Lifestyle behaviors were measured using a self-designed questionnaire based on the Transtheoretical Model. RESULTS: From 2018-2020, the experimental group successfully maintained a healthy lifestyle. The MMSE score in the experimental group was significantly higher in the 3rd year than that in the control group (25.37 vs 22.56, p < 0.001). CONCLUSIONS: Sustainable community participation and adopting a healthy lifestyle could effectively maintain the cognitive function of the study participants. However, more needs to be done to support rural older adults to maintain a healthy diet and control their weight.

The influence of gender and temephos exposure on community participation in dengue prevention: a compartmental mathematical model.

BACKGROUND: The use of temephos, the most common intervention for the chemical control of Aedes aegypti over the last half century, has disappointing results in control of the infection. The footprint of Aedes and the diseases it carries have spread relentlessly despite massive volumes of temephos. Recent advances in community participation show this might be more effective and sustainable for the control of the dengue vector. METHODS: Using data from the Camino Verde cluster randomized controlled trial, a compartmental mathematical model examines the dynamics of dengue infection with different levels of community participation, taking account of gender of respondent and exposure to temephos. RESULTS: Simulation of dengue endemicity showed community participation affected the basic reproductive number of infected people. The greatest short-term effect, in terms of people infected with the virus, was the combination of temephos intervention and community participation. There was no evidence of a protective effect of temephos 220 days after the onset of the spread of dengue. CONCLUSIONS: Male responses about community participation did not significantly affect modelled numbers of infected people and infectious mosquitoes. Our model suggests that, in the long term, community participation alone may have the best results. Adding temephos to community participation does not improve the effect of community participation alone.

"You get out of the house, you talk to each other, you laugh And that's fantastic" - a qualitative study about older people's perceptions of social prescribing in mainland Portugal.

BACKGROUND: Social prescribing (SP) is a non-clinical approach, most commonly based in healthcare units, that aims to address non-medical health-related social needs by connecting individuals with community-based services. This qualitative study explores the perception of Portuguese older adults regarding the benefits of SP and their willingness to participate in SP initiatives. METHODS: Three face-to-face focus group sessions were conducted with 23 participants in different cities in Portugal. Open and semi-open questions were used to guide the discussions and thematic analysis was used to analyze the data. RESULTS: The participants recognized the potential benefits of SP for older adults, including diversifying leisure activities, improving mental health, and complementing existing support systems. They highlighted the need for external support, usually in the form of link workers, to facilitate personalized referrals and consider individual characteristics and preferences. While some participants expressed reluctance to engage in SP due to their existing busy schedules and a perceived sense of imposition, others showed openness to having new experiences and recognized the potential value of SP in promoting activity. Barriers to participation, including resistance to change, mobility issues, and family responsibilities, were identified. CONCLUSIONS: The study emphasizes the importance of a person-centered and co-designed approach to SP, involving older adults in the planning and implementation of interventions. The findings provide valuable insights for the development of SP programs tailored to the unique needs and aspirations of older adults in Portugal, ultimately promoting active and healthy aging. Future research should consider the perspectives of family doctors and include a broader representation of older adults from diverse geographic areas.

"A perfect storm": Autistic experiences of menopause and midlife.

LAY ABSTRACT: Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.

[Lights and shadows in the implementation of community action for health]. / Luces y sombras en la implementación de la acción comunitaria para la salud.

OBJECTIVE: To explore the experiences of individuals who develop projects and interventions where community participation-action constitutes a strategic tool for reducing health inequalities. METHOD: Qualitative study based on semi-structured, in-depth online interviews with individuals considered experts in the development of health promotion strategies involving community participation. A total of 12 individuals from the healthcare, social healthcare, academic, and associative backgrounds were selected. The texts were analyzed following the thematic content analysis approach. RESULTS: The prominent strength of the processes involving the interviewed individuals is their participatory approach. However, there is no genuine commitment to promoting community participation from primary healthcare, and precarity has been identified as a significant weakness in the development of participatory health promotion projects. The sustainability of participatory processes relies on the transfer of knowledge to the community and their empowerment. CONCLUSIONS: Participatory processes have demonstrated their ability to reposition the community as an essential part of the healthcare system. It would be interesting to use a measurement tool for participation in all community health actions, both to guide their design and planning and to assess the depth of participation and its impact on the process. Enhancing community action expectations for health in the near future involves promoting a community-oriented approach in primary care and intersectoral collaboration, which requires a significant institutional and policy commitment.

Upsurge of dengue outbreaks in several WHO regions: Public awareness, vector control activities, and international collaborations are key to prevent spread.

Background: Dengue, the world's fastest-growing vector-borne disease, has skyrocketed in the 21st century. Dengue has harmed human health since its first known cases among Spanish soldiers in the Philippines to its 21st-century outbreaks in Southeast Asia, the Pacific, and the Americas. In light of the current circumstances, it is imperative to investigate its origin and prevalence, enabling the implementation of effective interventions to curb the upsurge. Methods: Our study examines the history of dengue outbreaks, and evolving impact on public health, aiming to offer valuable insights for a more resilient public health response worldwide. In this comprehensive review, we incorporated data from renowned databases such as PubMed, Google Scholar, and Scopus to provide a thorough analysis of dengue outbreaks. Results: Recent dengue outbreaks are associated with rapid urbanization, international travel, climatic change, and socioeconomic factors. Rapid urbanization and poor urban design and sanitation have created mosquito breeding places for dengue vectors. Also, international travel and trade have spread the pathogen. Climate change in the past two decades has favored mosquito habitats and outbreaks. Socioeconomic differences have also amplified the impact of dengue outbreaks on vulnerable communities. Dengue mitigation requires vector control, community engagement, healthcare strengthening, and international cooperation. Conclusion: Climate change adaptation and urban planning are crucial. Although problems remain, a comprehensive vector control and community involvement plan may reduce dengue epidemics and improve public health in our interconnected world.

Understanding experiences of 'Gig Buddies': A befriending scheme for people with intellectual disabilities.

BACKGROUND: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. METHODS: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. RESULTS: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. CONCLUSIONS: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves.

Using a community engaged research approach to develop the social skills training program for adults with Williams syndrome.

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.