Community Voices Research Articles

A Qualitative Exploration of Women With Cystic Fibrosis and Urinary Incontinence.

Women with cystic fibrosis (CF) historically experience a high prevalence of urinary incontinence (UI). However, this area is understudied, especially in the modern era of highly effective modulator therapy (HEMT). This study aimed to explore the UI experiences, knowledge, care-seeking behavior, and treatment preferences of women with CF. We recruited women aged ≥18 years through the CF Foundation's Community Voice national registry if they had a diagnosis of CF and reported UI. Participants underwent individual, semistructured interviews exploring their experiences, attitudes, and preferences toward UI that were audiorecorded and transcribed. Two coders performed thematic analysis using deductive and inductive coding approaches. Twenty-six participants completed interviews (average age, 45.1 years; range, 24-61 years). Key themes included the following: (1) most women with CF and UI report low bother from symptoms likely related to stress UI, and HEMT has greatly improved UI symptoms and decreased bother; (2) most women with CF and UI had previously discussed UI symptoms with family and/or peers but had not sought care due to stigma or low priority; (3) women with CF and UI had minimal knowledge about UI in general and how it relates to CF; (4) most desired broad screening for UI from their CF team and improved multidisciplinary care; and (5) highly effective UI treatment options with low-time commitment and easily accessible resources are desired. Women with CF and UI report low knowledge and care-seeking behavior related to this condition and desire improved care provision. Importantly, HEMT may improve UI symptoms among people with CF.

Research protocol for bridging research, accurate information and dialogue (BRAID)-clinical trials: a mixed-methods study of a community-based intervention to improve trust and diversify participation in clinical trials.

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.

Advocates for STEM education: Developing advocacy identity in STEM teacher leadership

AbstractScience, technology, engineering, and mathematics (STEM) teacher advocacy is a particular skillset within STEM teacher leadership, but little is known about how STEM teacher leaders develop their identity as advocates for STEM education. To glean a more nuanced and deeper understanding of developing advocate identity among STEM teacher leaders, we conducted a duoethnographic study to critically reflect on our lived experiences as STEM teacher leaders engaged in advocacy. Drawing upon identity theory to frame our study, we co‐developed and individually responded to a set of questions and prompts that critically interrogated our experiences, leading toward identifying as advocates for STEM education. Multiple subsequent critical discussions about our responses led to a recorded dialogic conversation, which acted as our site of research. Emergent themes from duoethnographic analysis revealed having increased awareness of STEM education policies and their impacts, recognizing injustices affecting marginalized communities, and acknowledging systemic barriers preventing community voices in policymaking helped to strengthen our advocacy identities. The dialogue also emphasized the importance of reaching out to communities to understand needs when developing policy recommendations. We conclude the study by making recommendations to support STEM teacher leaders interested in engaging in advocacy at the individual classroom, school, and district levels.

Co-designing public policy in high-income colonial-settler countries – a systematic review

ABSTRACT While co-design has become ubiquitous in policy implementation, its potential for policy design remains to be investigated. In accordance with the PRISMA guidelines, this article systematically reviews the evidence to uncover a dearth of co-designed policies in high-income colonial-settler countries. Notwithstanding, the four co-designed policies illustrate seven critical themes that offer policymakers ideological considerations when facilitating the authentic involvement of ‘end-users’ in policy design. Though co-design is not a panacea, this review demonstrates how the embedment of co-design in policy design mechanisms can address entrenched power imbalances, empower community voices, wear down silos, and pull up more relevant seats to the decision-making table – phenomena uncommonly found in colonial-settler contexts. Further research is needed to understand the benefits, risks, and impacts of co-designed policies and practical implications for policymakers that operate within constrained landscapes to enable genuine participation of intended beneficiaries in policy design.

Equity in practice: Lessons from a cohort-based model for community voice and input in data linkage and use

Objective and ApproachCross-sector data sharing and linkage can transform information about individuals into actionable intelligence to build stronger, healthier, and more just communities. Yet, the use of cross-sector data can also reinforce legacies of racist policies and produce inequitable resource allocation, access, and outcomes. To avoid this, we must embed data equity practices throughout the data life cycle and provide mechanisms for community voice and input. However, few integrated data systems are doing this well. To combat this challenge, AISP designed a 30-month technical assistance program–the Equity in Practice Learning Community (EiPLC)--to collaboratively develop guidance and models for centering racial equity in data integration. This session provides an overview of our EiPLC Scope & Sequence, a curriculum we designed to guide this work. Currently, 10 jurisdictions in the U.S. are receiving coaching around this curriculum and shifting their data integration practices to advance equity. ResultsTo date, progress has been nonlinear, with positive results. Work in action across the cohorts includes changes to cross-agency data governance, collaborative research agendas, legal agreements, staffing, and community participation practices including. ConclusionsWhile these efforts are nascent, progress is evident and site team members indicate growth as individuals and as site teams. Key features of success include a focus on building relationships, establishing working norms, grappling with racialized histories, and interrogating the role of structural racism and systems of power. ImplicationsThe EiPLC provides a successful model for supporting sites to embed data equity principles throughout the data life cycle.

EXPRESS: The Female Consumer Response Implications of Male Dominance in a Product’s Online Community

Does male dominance of a product’s online community deter female community voices? Does it affect product ratings and the nature of content produced too? How might female consumers’ brand attitudes and intentions be affected ultimately? Utilizing a large panel dataset of online customer reviews in the beer industry and three experimental studies, these questions are empirically investigated. This product category is highly male dominant, on average, but there is significant variation across products to enable degrees of male dominance to be empirically examined. Other theoretical accounts of simple majority, tie-strength, homophily, and cultural masculinity are empirically considered as well. The findings serve to complement prior work on online word of mouth (OWOM), demonstrating that male dominance of an online community can deter contributions from female reviewers and generate lower rating departure from community average sentiment by female reviewers. The type of content that is generated by female reviewers is also affected, with a reduction in the evocation of femininity themes and an increase in the evocation of masculinity themes. Downstream brand attitudes and trial intentions are also impacted. A resulting implication of high product community male dominance is the availability of less information for consumers when evaluating products.

Artificial intelligence and social accountability in the Canadian health care landscape: A rapid literature review.

Situated within a larger project entitled "Exploring the Need for a Uniquely Different Approach in Northern Ontario: A Study of Socially Accountable Artificial Intelligence," this rapid review provides a broad look into how social accountability as an equity-oriented health policy strategy is guiding artificial intelligence (AI) across the Canadian health care landscape, particularly for marginalized regions and populations. This review synthesizes existing literature to answer the question: How is AI present and impacted by social accountability across the health care landscape in Canada? A multidisciplinary expert panel with experience in diverse health care roles and computer sciences was assembled from multiple institutions in Northern Ontario to guide the study design and research team. A search strategy was developed that broadly reflected the concepts of social accountability, AI and health care in Canada. EMBASE and Medline databases were searched for articles, which were reviewed for inclusion by 2 independent reviewers. Search results, a description of the studies, and a thematic analysis of the included studies were reported as the primary outcome. The search strategy yielded 679 articles of which 36 relevant studies were included. There were no studies identified that were guided by a comprehensive, equity-oriented social accountability strategy. Three major themes emerged from the thematic analysis: (1) designing equity into AI; (2) policies and regulations for AI; and (3) the inclusion of community voices in the implementation of AI in health care. Across the 3 main themes, equity, marginalized populations, and the need for community and partner engagement were frequently referenced, which are key concepts of a social accountability strategy. The findings suggest that unless there is a course correction, AI in the Canadian health care landscape will worsen the digital divide and health inequity. Social accountability as an equity-oriented strategy for AI could catalyze many of the changes required to prevent a worsening of the digital divide caused by the AI revolution in health care in Canada and should raise concerns for other global contexts.

Community-Engaged Survey Approach to Pandemic Impacts on Marginalized Communities, Massachusetts, 2020-2021.

Objectives. To describe how an innovative, community-engaged survey illuminated previously unmeasured pandemic inequities and informed health equity investments. Methods. The methodological approach of Massachusetts' COVID-19 Community Impact Survey, a cross-sectional online survey, was driven by key health equity principles: prioritizing community engagement, gathering granular and intersectional data, capturing root causes, elevating community voices, expediting analysis for timeliness, and creating data-to-action pathways. Data collection was deployed statewide in 11 languages from 2020 to 2021. Results. The embedded equity principles resulted in a rich data set and enabled analyses of populations previously undescribed. The final sample included 33 800 respondents including unprecedented numbers of populations underrepresented in traditional data sources. Analyses indicated that pandemic impacts related to basic needs, discrimination, health care access, workplace protections, employment, and mental health disproportionately affected these priority populations, which included Asian American/Pacific Islanders and parents. Conclusions. Equity-centered data approaches allow for analyses of populations previously invisible in surveillance data, enable more equitable public health action, and are both possible and necessary to deploy in state health departments. (Am J Public Health. 2024;114(S7):S599-S609. https://doi.org/10.2105/AJPH.2024.307800).

Setting the Priorities for LGBT+ Research and Intervention Effort in Malaysia Through Community Voices: A Brief Report.

Internationally, there is a growing acceptance of gender and sexuality diversity and acknowledgment of LGBT + identities as health determinants. However, caution is warranted when applying research and intervention priorities from Global North countries to regions where LGBT + identities remain criminalized. In 2024, Malaysia maintains legal stances persecuting LGBT + individuals and shows no intent to address this human rights issue. This study offers an overview of pivotal issues identified by LGBT + communities in Malaysia that urgently require attention and resolution. Data were employed from a large-scale community-based survey: the KAMI Survey that recruited LGBT + participants in Malaysia in late 2023 and descriptive analyses were conducted on the responses of 637 participants (mean age = 27.75). Results revealed key issues deemed 'very important' to address by participants comprised HIV/AIDS, training for healthcare providers, police mistreatment, and discrimination, with more than 80% reporting each of these. When prompted to select a single issue for urgent resolution, three-fifths (61.0%) prioritized 'criminalizing laws affecting LGBT + individuals'. Echoing prolonged advocacy by local LGBT + community organizations, the author emphasizes the need for collective allyship across stakeholders to develop evidence-based practices and policies to address the concerns articulated in this paper.

Targeting Machine Learning and Artificial Intelligence Algorithms in Health Care to Reduce Bias and Improve Population Health.

Policy Points Artificial intelligence (AI) is disruptively innovating health care and surpassing our ability to define its boundaries and roles in health care and regulate its application in legal and ethical ways. Significant progress has been made in governance in the United States and the European Union. It is incumbent on developers, end users, the public, providers, health care systems, and policymakers to collaboratively ensure that we adopt a national AI health strategy that realizes the Quintuple Aim; minimizes race-based medicine; prioritizes transparency, equity, and algorithmic vigilance; and integrates the patient and community voices throughout all aspects of AI development and deployment.

Operationalizing Racism as a Public Health Crisis: Moving Beyond the Rhetoric!

It is well documented that systemic racism and social injustice result in health inequities for communities of color, including premature death. To date, more than 260 municipalities across the United States have declared racism as a public health crisis. In January 2021, the Nation’s Health, a monthly American Public Health Association newsletter, acknowledged Genesee County, Michigan, as one of the communities leading the work in operationalizing these declarations. This research highlights community engagement and participatory processes, models, and tools used to operationalize racism as a public health crisis in Genesee County. A participatory approach grounded in community-based participatory research (CBPR) methods was used to operationalize Genesee County’s resolution declaring racism a public health crisis. To ensure our efforts centered community voices, experiences, and priorities, our methodology consisted of: 1) hosting community dialogues focused on systemic racism; 2) the novel application of a committee composition matrix to develop a geographically and socially diverse Community Action Council to serve as the decision-making body for our strategic plan to identify and address systemic racism within Genesee County; 3) the development of a draft county-wide strategic plan; and 4) focus groups to review and provide feedback on the drafted strategic plan. CBPR provides guidance for effective community engagement and ensures that community voices are centered when identifying effective responses to systemic racism. CBPR principles also foster co-ownership of solutions, increasing trust, transparency, and accountability between researchers, community members, and other stakeholders.

Inclusion of people with disability (PWD) in the tourism workforce: a critical discourse analysis of policies and plans

Purpose This paper aims to critically examine the discourse on the disability workforce in Australian tourism policy and planning documents. Design/methodology/approach This research draws on a database of 490 Australian tourism policy and planning documents, across national, state, regional and local levels of governments, destination management organisations and peak industry bodies, to systematically examine the issues pertaining to disability workforce over the ten-year policy cycle (2013–2023), through critical discourse analysis. Findings Analysis revealed 20 of the existing 490 documents had mentions of the inclusion of people with disability (PWD) in the tourism workforce. Through critical discourse analysis, the nuances of political attitudes are evident. Tourism policies tend to exert a cautious approach towards the inclusion of PWD employment. PWD do not have a strong voice when it comes to the formation of tourism policy, especially not as members of the tourism workforce. Practical implications This research underscores an emerging call for the government’s commitment to considering the underrepresented social group of PWD in the tourism workforce. By shedding light on critical discourse analysis of the disability workforce, tourism scholars and practitioners understand the current challenges and explore opportunities to implement tangible actions for an inclusive work environment for all. Originality/value The research is novel and innovative as it critically examines the discourse of the disability workforce in the tourism sector through an institutional theory perspective. The limited emphasis of government policies on the disability workforce may result in missed opportunities to encourage meaningful employment engagement of PWD in tourism organisations. Consequently, this research contributes a tripartite model of policy recommendations that explicitly articulates the mechanisms for change that are tailored to tourism workforce and advocates for the active voices of PWD community in the policy formation process.

Evidence-based meets community-centred: A new approach to creating informal learning opportunities for children.

Informal learning spaces present ripe opportunities to supplement formal learning experiences. In this paper, we offer a new approach to creating enriching learning activities for public spaces that reflects evidence-based practices rooted in developmental psychology and uses community-centring practices from participatory research approaches. We first argue that extant theory and research supports the use of guided play pedagogy to foster learning. Second, we argue that effective translation of research to practice should incorporate community voices at every stage of the design, implementation and evaluation process. We describe a new initiative called Playful Learning Landscapes that reflects tenets of core developmental theory including constructivism and social learning theories as well as guided play pedagogy. Playful Learning Landscapes also extends the scope and scale of these evidence-backed theories by collaborating with communities to design activities for local community spaces. Taken together, we offer a way of upholding core developmental theory with equitable, culturally inclusive research and intervention practices. Transforming community spaces into hubs for children's learning promises wide-reaching implications for equitable access, school readiness and early childhood education.

Centering Communities in Global Health: Using Human-Centered Design to Facilitate Collaboration and Intervention Development.

Utilizing iterative and collaborative tools, Human-centered Design (HCD) facilitates the creation of tailored solutions for multifaceted issues by fostering empathy and a deep understanding of human behaviors. This paper presents insights gleaned from employing HCD tools to center communities in global health intervention development. The study team collaborated with community members in Dailekh, Nepal to co-design interventions to address harms associated with menstrual seclusion, known as chhaupadi. A Community Design Team, comprising 10 women representing various castes and ages convened for a four-day intervention co-design workshop in the community. A Community Validation Team, comprising 12 individuals from diverse occupational and caste backgrounds provided feedback on the interventions. Additionally, six village leaders participated in Key Informant Interviews to garner additional insights. In the study's initial "discovery" phase, the Community Design Team employed HCD tools to generate a nuanced understanding of the context, stakeholders, and community experiences. Subsequently, in the second "design" phase, the Community Design Team crafted interventions to address harms associated with chhaupadi. Invaluable lessons gained from this study underscore the necessity of crafting contextually suitable tools, checklists, and prompts for participants, allocating sufficient staff, time, and resources, and adapting to participants' literacy levels and engagement preferences, whether through group or individual activities. Reflecting on these insights, our experience suggests HCD offers promising tools to authentically and equitably involve participants with diverse backgrounds in articulating their own ideas for community-based solutions in Nepal. Health practitioners, researchers, and intervention development experts are encouraged to consider adopting HCD methodologies to prioritize community voices in devising solutions for complex health challenges.

Multivocal responses to conservation in Maluku province, Indonesia: Biocultural diversity, protest and management in a zone of ecological transition

The Moluccan islands of eastern Indonesia (Maluku) were amongst the last frontiers to be opened‐up for large‐scale resource extraction and economic development in modern times. The interventions of organized conservation science and local conservation activity are also recent. Yet the area has a complex economic history and historical ecology linked to the spice trade, which itself prompted early scholarly interest in its natural history. Conservation practice since 1980 is shown to be deeply embedded in local political events and cultural contexts, exhibiting a diversity of institutional forms and a 'cacophony' of community voices. We conclude that conservation research and interventions need to pay more attention to historical ecologies, biocultural linkages and distinctively local patterns of conservation activity.

Using community-based participatory research methods to build the foundation for an equitable integrated health data system within a Canadian urban context

Health inequalities amplified by the COVID-19 pandemic have disproportionately affected racialized and equity-deserving communities across Canada. In the Municipality of Peel, existing data, while limited, illustrates that individuals from racialized and equity-deserving communities continue to suffer, receive delayed care, and die prematurely. In response to these troubling statistics, grassroots community advocacy has called on health systems leaders in Peel to work with community and non-profit organizations to address the critical data and infrastructure gaps that hinder addressing the social determinants of health in the region. To support these advocacy efforts, we used a community-based participatory research approach to understand how we might build a data collection ecosystem across sectors, alongside community residents and service providers, to accurately capture the data about the social determinants of health. This approach involved developing a community engagement council, defining the problem with the community, mapping what data is actively collected and what is excluded, and understanding experiences of sociodemographic data collection from community members and service providers. Guided by community voices, our study focused on sociodemographic data collection in the primary care context and identified which service providers use and collect these data, how data are used in their work, the facilitators and barriers to data use and collection. Additionally, we gained insight into how sociodemographic data collection could be respectful, safe, and properly governed from the perspectives of community members. From this study, we identify a set of eight recommendations for sociodemographic data collection and highlight limitations. This foundational community-based work will inform future research in establishing data governance in partnership with diverse and equity-deserving communities.

Partnering With a Purpose: Promoting Equity and Justice for Black Children With Autism Spectrum Disorder.

Black children with autism and their families face disparities within clinical care and services, leading to inequitable health outcomes. However, there is limited research centering the voices of the Black autism community in understanding how to address these inequities. In this study, researchers explored the perspectives of caregivers of Black children with autism regarding barriers to equitable care and recommendations for improved services. Community leaders from an autism advocacy group and researchers from a large academic medical center partnered to conduct a Group Level Assessment with 31 Black families of children with autism. During a three-hour research event, participants discussed their experiences within community, school, and clinical services, collectively coded and interpreted the data, and generated action steps to improve services. The findings revealed 6 areas of need regarding the services Black children with autism and their caregivers receive. Black caregivers recommended that systems of care improve access to culturally responsive care, integrate caregiver priorities within their care, and engage in collaborative decision-making with caregivers. Providers should also equip caregivers with an accessible roadmap for navigating their child's services and connect them to care management professionals and resources for mental health support. The findings of this study address a critical gap in the literature by partnering with the Black autism community to identify solutions to address their needs; these recommendations can be used as a foundation for service providers to reduce disparities and improve outcomes for Black children with autism and their families.

Ka Malu a Waʻahila: Cultivating cultural safety for Native Hawaiian students in university behavioral health

Ka Malu a Waʻahila, an Indigenous-centered and student-informed program, was established in 2022 to meet the growing behavioral health needs of Native Hawaiian college students at the University of Hawaiʻi at Mānoa. Utilizing a cultural safety foundation and relying on the wisdom of community voices articulated by the Pilinahā framework, clinicians provide prevention, direct intervention, and outreach services. As the program continues to evolve, future plans include expanding to other Pacific Islanders and developing an additional layer of systemic change through building an Indigenous behavioral health training pathway and training curriculum for clinicians serving Native Hawaiian and Pacific Islander (NHPI) communities.

Opportunity for informal business networking to reshape the institutional capacity of community in housing revitalization projects: learning from Bandung and Surakarta, Indonesia

ABSTRACT Growing enthusiasm for collaborative planning and housing revitalization projects has instigated change in the institutional arena from government to multi-stakeholder domains for more democratic and sustainable outcomes. However, several projects, especially at the community level, failed to strengthen community power and voice, resulting in short-term community-driven activities. Amidst growing academic concerns over the efficacy of collaborative planning in housing revitalization projects and community empowerment, this paper presents two case studies from Indonesia – Laweyan (Surakarta) and Cibangkong (Bandung) – as counter-examples. The discussion is centred on the institutional capacity of urban poor communities, which has been historically perceived as weak and passive, to contribute ideas and initiatives in sustaining collaborative planning practices despite decreasing support from the government. The findings suggest that the relational resources, maintained through informal business networking within the poor community led by community leaders, are critical in reshaping their institutional capacity.

Our Heritage, Our Stories: developing AI tools to link and support community-generated digital cultural heritage

PurposeCommunity-generated digital content (CGDC) is one of the UK’s prime cultural assets. However, CGDC is currently “critically endangered” (Digital Preservation Coalition, 2021) due to technological and organisational barriers and has proven resistant to traditional methods of linking and integration. The challenge of integrating CGDC into larger archives has effectively silenced diverse community voices within our national collection. Our Heritage, Our Stories (OHOS), funded by the UK’s AHRC programme Towards a National Collection, responds to these urgent challenges by bringing together cutting-edge approaches from cultural heritage, humanities and computer science.Design/methodology/approachExisting solutions to CGDC integration, involving bespoke interventionist activities, are expensive, time-consuming and unsustainable at scale, while unsophisticated computational integration erases the meaning and purpose of both CGDC and its creators. Using innovative multidisciplinary methods, AI tools and a co-design process, previously unfindable and unlinkable CGDC will be made discoverable in our virtual national collection.FindingsThere currently exists a range of disconnected, fragile and under-represented community-generated heritage which is at increasing risk of loss. Therefore, OHOS will work to ensure the survival and preservation of these nationally important resources, for the future and for our shared national collection.Originality/valueAs we dissolve barriers to create meaningful new links across CGDC collections and develop new methods of engagement, OHOS will also make this content accessible to new and diverse audiences. This will facilitate a wealth of fresh research while also embedding new strategies for future management of CGDC into heritage practice and training and fostering newly enriching, robust connections between communities and archival institutions.