Community Advisory Committees Research Articles

Role of Community Resources in Education Planning and Delivery in Ghana

Abstract Introduction: This study explored the involvement of community resources in education planning and delivery in Ghana. It focused on how the involvement of community resources have had an impact on educational planning and development in the Ada East District of the Greater Accra Region of Ghana. Methods: A qualitative method was used, and data collected through structured interview from fifteen participants of parents, teachers, and education officers. The participants were selected by using purposive sampling technique. The data were analysed qualitatively as per the themes that emerged. Results: The findings indicated that communities contribute to the development of effective educational policies by providing insights and perspectives through various channels, such as community forums, advisory committees, and public hearings. Also, communities celebrate and embrace cultural diversity, fostering inclusivity within educational settings. Discussion: To maximize community involvement in education, it is essential to establish collaborative partnerships with community organizations, PTA, SMC, businesses, and institutions. Community organizations, businesses, and institutions can provide a wide range of resources, such as funding, expertise, facilities, and educational materials. These resources can greatly benefit schools and students, improving the quality of education. Limitations: With just 15 participants, it may be challenging to generalize the findings to the entire population of Ghana, or even a specific region. The small sample size may not adequately represent the diversity of experiences and perspectives within the country. Conclusions: It was recommended that there was a need to establish of strong partnerships between schools, parents, community leaders, and local organizations by the Ghana Education Service is crucial to promote collaboration and shared responsibility in education planning and delivery.

Manifestations and Strategies to Deal with Politics Science Adulteration in Community Engagement Healthcare Research

Community and Public Engagement (CPE) is increasingly acknowledged as an appropriate approach in healthcare and other policy related research. However, it is also becoming clear that community engagement necessarily involves and is significantly affected by politics. This paper illuminates the manifestations of politics in community engagement research drawing examples from a community-level study that was carried out in Kasulu, a rural district in Tanzania. Specifically, the paper starts by providing some conceptual highlights on community engagement and politics, then it proceeds to show the different forms and shapes that politics can take in community-level research. Further, it argues that community engagement is by its nature a defacto victim of politics. Finally, it suggests workable strategies and tactics that could be considered by community engagement researchers to remedy scientific research from being adulterated by politics. Four strategies that were employed in our project namely creating cognitively aware communities, preparing and orienting stakeholders to engagement guidelines, the use of Community Advisory Committees, and ensuring diversity in all engagement platforms are described and exemplified. If effectively used, these measures can potentially improve the uptake and sustainability of the solutions that community-level healthcare engagement research partnerships tend to generate.

Memory Keepers Medical Discovery Team: addressing Indigenous dementia disparities through deep exploration of culture and community‐specific context

AbstractBackgroundThe Memory Keepers Medical Discovery Team (MK‐MDT) was established in 2016 to address brain health equity for Indigenous and rural populations. Indigenous populations are under‐represented in Alzheimer’s disease and related dementias (ADRD) research studies and clinical trials, yet there is a dire need to address ADRD disparities in this population. In this paper we outline our research approach and studies underway at the MK‐MDT that are designed to address the ADRD disparity in Indigenous populations in the US and Canada. We highlight our flagship study “Indigenous Cultural Understandings of Alzheimer’s Disease and Dementia – Research and Engagement” (ICARE) as a key foundational ethnographic study necessary to advance the field.MethodThe MK‐MDT incorporates a community‐based participatory research (CBPR) approach with two‐eyed seeing. Two‐eyed seeing ensures the inclusion and valuing of Indigenous knowledge throughout the research process. In ICARE, we maintain a consistent focus on ethnographic research with Indigenous communities to ensure deep understanding of how culture and context shape the dementia experience. Interviews, sequential focus groups, participant observation and fieldnotes are used to populate an ethnographic database on the lived experience of dementia in Indigenous populations. We incorporate a diversity perspective by working with multiple Indigenous communities for each study. We invest in community engagement infrastructure such as community advisory committees, elder advisors, community‐based researchers and outreach workers to ensure our methods follow local ethical protocols, is culturally safe, and community controlled.ResultWe have successfully initiated NIH‐funded programs of research aimed at reducing dementia disparities. ICARE was launched in 2018 and included 54 interviews and 14 sequential focus group sessions (n = 17) in four diverse Indigenous communities, establishing the first stage of a robust ethnographic database. Findings support the existence of an Indigenous specific understanding of dementia that impacts the dementia care experience.ConclusionThe CBPR approach coupled with two‐eyed seeing has allowed for authentic engagement with multiple Indigenous communities and has supported the collection of ethnographic data that can be used to develop culturally appropriate health promotion materials and interventions. The community‐based infrastructure that has been established is currently supporting multiple projects, including clinical research.

Benefits and barriers to engagement of mental health caregivers in advisory roles: Results from a cross-sectional survey.

Mental health institutions and community organizations have had difficulty recruiting patients and caregivers onto their Patient, Family, and Community Advisory Committees (PFACs). Previous research has focused on barriers and enablers of engaging patients and caregivers who have advisory experience. This study acknowledges the experiential difference between patients and caregivers by focusing only on caregivers; further, we compare the barriers and enablers between advising versus non-advising caregivers of loved ones with mental illness. Data from a cross-sectional survey codesigned by researchers, staff, clients, and caregiver affiliated with a tertiary mental health center were completed by n = 84 caregivers (n = 40 past/current PFAC advising caregivers; n = 44 non-advising caregivers). Caregivers were disproportionately female and late middle-aged. Advising and non-advising caregivers differed on employment status. There were no differences of the demographics of their care-recipients. More non-advising caregivers reported being hindered from PFAC engagement by family-related duties and interpersonal demands. Finally, more advising caregivers considered being publicly acknowledged as important. Advising and non-advising caregivers of loved ones with mental illness were similar in demographics and in reporting the enablers and hindrances that impact PFAC engagement. Nevertheless, our data highlights specific considerations that institutions/organizations should consider when recruiting and retaining caregivers on PFACs. This project was led by a caregiver advisor to address a need she saw in the community. The surveys were codesigned by a team of two caregivers, one patient, and one researcher. The surveys were reviewed by a group of five caregivers external to the project. The results of the surveys were discussed with two caregivers involved directly with the project.

Community advisory committee as a facilitator of health and wellbeing: A qualitative study in informal settlements in Nairobi, Kenya.

A range of community engagement initiatives to advance health and wellbeing are currently taking place in informal settlements in low and middle income countries (LMICs), including community and stakeholder meetings, use of radio, film, TV programs and other information, education and communication materials (IECs) organized by different stakeholders. While these initiatives tend to focus on unidirectional flow of information to communities, the need to incorporate initiatives focusing on bi or multi-directional flow of information have been identified. Despite the extensive body of literature on community engagement, the role of Community Advisory Committees (CACs) in advancing health and wellbeing in informal settlements is still a puzzle, occasioned by considerable ambiguity. A community advisory committee is a dedicated group of volunteers to support health and wellbeing needs of their community using a community approach. Researchers and project implementers work in partnership with CACs to successfully implement their activities within the target community. In this paper, using in-depth interviews, we document the roles of CACs in advancing health and wellbeing in Korogocho and Viwandani informal settlements in Nairobi, Kenya. Study participants described the role of CAC in advancing health and wellbeing through education and awareness creation, advisory roles in research and implementation goals, protecting community interests and acting as gatekeepers and collaborators to community partners. Identified barriers to achieving CAC roles include lack of finance and other field resources, being labeled as organization staff and low involvement by some upcoming and emerging local leaders on issues which involve the CAC constituents. Enablers of CACs in their roles include possession of appropriate skills and values by members; involvement of the community in the selection of members, regular consultative and advisory meetings, representativeness in the composition of CAC membership and knowledge about the community. We conclude that CACs play key roles in advancing health and wellbeing in informal settlements and that existing CACs mechanisms and operations need to be given due consideration by researchers, project implementers and local authorities right from project conceptualization. CACs need recognition beyond consultations and placations during research and project implementation to a veritable social structure for community's social viability and survival as well as partners in development for inclusive urbanization process. While CACs have contributed in advancing health and wellbeing in informal settlements, there is need for a long-term strategy to optimize their impact and reduce puzzles around their roles.

942Global Indigenous and Tribal Peoples Data Governance in Health Research: A systematic review

Abstract Background Despite a broad range of research using Indigenous specific data, there is limited research to describe what constitutes data governance. To identify priorities and monitor progress in health, data is critical. Accurate collection and appropriate analysis of population level data is necessary in understanding population distributions of health and wellbeing. The aim of this review is to provide a comprehensive understanding of the current literature describing Indigenous Data Governance (IDG) processes in health research. Methods A comprehensive a-priori search strategy has been developed and submitted for registration through PROSPERO(APP170033). Literature will be sourced from bibliographic databases, review articles, key journals, conference proceedings, grey literature and referrals by key experts up until 01/2020 and synthesised (through meta-study and meta-aggregation approaches) in accordance with PRISMA guidelines. Results Once completed, a descriptive overview along with discussion on IDG processes in decision making specific to health research will be synthesized. IDG 'interventions' may include, but are not limited to, community advisory committees, Indigenous leadership, or institutional and/or project policies pertaining to decision making processes in the use of data in health research. Conclusions This review will provide evidence of definitions and procedures specific to IDG in the literature and how IDG, as a process, is operationalised in Indigenous health research across the globe. Key messages Preliminary Key messages include the lack of IDG processes described in the literature and the need for the development of guidelines to support researchers in operationalising Indigenous Data Sovereignty.

Boot camp translation of Alzheimer’s disease and the Engaging Communities of Hispanics for Aging Research (ECHAR) Network

AbstractBackgroundHispanics/Latinos (H/Ls), the largest ethnic minority in the U.S., are 50% likelier than non‐Hispanic whites to develop Alzheimer’s disease‐related dementias (ADRD). Despite comprising 18% of the U.S. population, H/Ls represent less than 1% of participants in NIH‐funded clinical trials and less than 8% of NIH AD Research Centers, greatly limiting understanding of underlying causes of disparities. However, health literacy gaps may impact research participation. We introduce here the Engaging Communities of Hispanics for Aging Research (ECHAR) Network. The overall objective of this collaborative, transdisciplinary network is to engage, educate, and motivate H/L community members for participation in ADRD research by addressing ADRD‐related communication through use of a novel community‐based participatory method – Boot Camp Translation (BCT).MethodBCT is a manualized, robust six‐to‐eight‐month program designed to translate medical jargon into action‐based messages that are more effectively consumed by local communities. It fosters engagement between clinical experts and patients as well as community members with the overarching goal of helping to make medical evidence and guidelines locally relevant and accessible. We completed the first known BCT on ADRD with 15 community stakeholders in the Denver metropolitan area over 6 months.ResultWe had 0% attrition. Group members saw a significant (p<0.05) improvement in both subjective understanding and objective knowledge of ADRD. Four main themes were perceived as most relevant to their community: the importance of brain health, a call for self‐advocacy in medical settings and with providers, the need to learn more through research, and awareness of basic targets of cognitive changes that may be associated with ADRD. These themes were structured into a dissemination plan that included both printed and digital materials in addition to oral presentations shared with community organizations.ConclusionThe ECHAR Network aims to expand these initial findings. By the end of this project, ECHAR will have: (1) established and trained community advisory committees on ADRD in at least three cities; (2) developed key, culturally‐informed, ADRD‐related materials as well as dissemination and evaluation strategies for H/L recruitment; and (3) developed sustainable research infrastructure to enhance outreach by supporting health disparities investigators and pilot grants.

A citizen-centred approach to CSR in banking

PurposeThis study aims to demonstrate how banks can align their CSR investment to community needs and citizen preferences. A grounded theory inductive approach is applied to deliver a community-centred process that banks can apply to inform CSR investment decisions.Design/methodology/approachThis study employed a sequential mixed-method research design to identify areas of need from the perspective of community leaders and members through depth interviews. Following thematic analysis, citizen preferences for eight priority areas were elicited using best-worst scaling (BWS).FindingsClear investment preferences emerged with citizens preferring six community investment causes, namely, (1) infrastructure, (2) crisis and prevention support, (3) community groups, (4) youth facilities and activities, (5) initiatives that support the local environment, and (6) physical activity promotion. The forming of community advisory committees emerged as one approach that banks could apply to ensure long-term citizen-centred CSR investment decisions.Research limitations/implicationsThis study is limited to one community and one community bank and a small convenience, cross-sectional data sample.Social implicationsCommunity-oriented financial institutions should centre investment decisions on community need and citizen preferences ensuring investments made deliver the greatest societal benefit and community support for the banks is garnered.Originality/valueThis paper provides important contributions to improve the effectiveness of CSR initiatives, providing an inductive, methodological approach that financial institutions can follow to better align their CSR investment to community needs and preferences.

Early Childhood Obesity Prevention in Rural West Virginia Extension’s Role and Lessons Learned

The Cooperative Extension system is uniquely positioned to lead rural community efforts to prevent obesity in early childhood. This article explores best practices in promoting healthy weights among young children and shares examples and resources relevant to Extension programming. The West Virginia (WV) Healthy Children Project aims to improve community, home, and early care and education (ECE) environments by promoting healthy eating, physical activity, outdoor play, and reduced screen time. This project primarily focuses on interventions with ECE providers serving 2-5-year-old children in three rural counties. Comprehensive assessments informed the interventions and guided Community Advisory Committees. ECE providers were trained in “I Am Moving, I Am Learning” (IMIL) and “Nutrition and Physical Activity Self-Assessment for Child Care” (Go NAP SACC) best practices and were supported with technical assistance and classroom resources. Garden-based learning, natural playscapes, painted playgrounds, and farm-to-ECE further enhanced the environments and experiences. Community leaders were engaged in advisory committees, transformative projects, and local family-focused activities. The efficacy of these practices was tracked using quantitative and qualitative evaluation strategies conducted throughout the project, including observations, ripple effects mapping, and questionnaires. This article describes the overall project strategies and reveals the lessons learned and the challenges encountered.

A Seat at the Table: Designing an Activity-Based Community Advisory Committee With People Living With HIV Who Use Drugs.

Recently, scholars have begun to critically interrogate the way community participation functions discursively within community-based participatory research (CBPR) and raise questions about its function and limits. Community advisory committees (CACs) are often used within CBPR as one way to involve community members in research from design to dissemination. However, CACs may not always be designed in ways that are accessible for communities experiencing the intersections of complex health issues and marginalization. This article draws on our experience designing and facilitating Research Rec'-a flexible, and activity-based CAC for a project about the acute-care hospital stays of people living with HIV who use drugs. Using Research Rec' as a case study, we reflect on ethical, methodological, and pedagogical considerations for designing and facilitating CACs for this community. We discuss how to critically reflect on the design and facilitation of advisory committees, and community engagement processes in CBPR more broadly.

The Familias Saludables partnership: Engaging the Latino community to address early childhood obesity.

Darcy A Thompson is an Associate Professor of pediatrics at the University of Colorado School of Medicine.Her main research seeks to address early childhood obesity in low-income children. She works in the Lifestyle Medicine clinic at Children's Hospital Colorado, a clinic focused on caring for children with obesity and related comorbidities. She is also an Associate Medical Director for the Research Institute at Children's Hospital Colorado. Her training includes a Master of Public Health degree, a medical degree (Yale University) and the Robert Wood Johnson Clinical Scholars Fellowship (University of Washington). Deborah (Deb) A Federspiel has been leading child health advocacy and community health improvement initiatives in support of Children's Hospital Colorado's mission for the past 15years. Her professional background includes experience developing and managing teams, programs and operations, as well as building partnerships and coalitions to drive key strategic initiatives and advance positive change on behalf of children and families. An active member of a number of community advisory committees and nonprofit boards, she has worked in the Colorado nonprofit sector since 1999. She has a Bachelor of Science in business administration from the University of Dayton.

Rural health services and the task of community participation at the local community level: a case study

Community participation in health service decision making is entrenched in health policy, with a strong directive to develop sustainable, effective, locally responsive services. However, it is recognised that community participation is challenging to achieve. The aim of the present study was to explore how a rural health service in Victoria enacts community participation at the local level. Using case study methodology, the findings indicate that enactment of community participation is desired by the health service, but a lack of understanding of the concept and how to enact associated policy are barriers that are exacerbated by a lack of resources and community capacity. The findings reveal a disconnect between community participation policy and practice.

Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research.

Reflecting on the processes and practices used to engage community stakeholders in patient-centered outcome research strengthens participation at the project level and contributes more broadly to developing knowledge about effective participatory processes and methods. We conducted a process evaluation of ongoing activities of a Patient Advisory Committee (PAC) formed around the development of an individualized decision aid for older women with early stage breast cancer. In-depth qualitative interviews were conducted with PAC members to obtain their input on the effectiveness of the project's participatory approach and identify barriers to participation. Results and Lessons Learned: Although there was general support for the aims of the study, patient knowledge gaps and meeting facilitation style limited participation. Members made suggestions on improving collaboration within the group that, when implemented, resulted in increased participation and revitalized interest in the project. Results suggest that engaging committee members in a process of evaluation and collective reflection during a research collaboration can break down barriers to collaboration, build relationships, create opportunities for co-learning and strengthen researchers' capacity to engage meaningfully with stakeholders.

Supporting parents of Aboriginal children with asthma: Preferences and pilot interventions

Asthma is one of the most common chronic conditions affecting Aboriginal children and adolescents in Canada, with associated high rates of hospitalization and emergency room visits. Social support deficits and social isolation pose significant problems for Aboriginal families coping with asthma challenges. However, support interventions that focus on the unique support needs of parents of Aboriginal children affected by asthma have not been investigated. Consequently, our study introduced support interventions to meet parents’ perceived support needs and intervention preferences. The study was conducted in urban and rural sites in three Canadian provinces. The interdisciplinary research team encompassed Aboriginal researchers and knowledge users, and the multimethod participatory research design was guided by Aboriginal community advisory committees. Diverse support interventions, designed to address the particular preferences and needs of parents in specific communities, were offered. Seventy-seven parents participated. These parents reported expanded support resources, increased support seeking, improved coping skills, and decreased support and education needs following the interventions, which were tailored to their unique needs. These participatory interventions were considered accessible, acceptable, relevant, and useful by parents.

Personalizing Medicine in Nigeria by Tailoring the Research Process: Points to Consider for Genomic Research

There is an increasing number of genomic research studies occurring in African countries, as well as recently enacted funding mechanisms to build capacity to conduct genomic research in Africa. While there is extensive literature and debate about the various national and international laws and policies related to genomic research in general, most discussions focus on developed and high-income countries. Genomic research, however, is a global endeavor requiring enrollment, data-sharing, and data-storage policies that involve socially, economically, and ethnically diverse populations. On one hand, the translation of genomic medicine into personalized clinical care will fail globally if as many different populations as possible are not adequately represented at the research stage. On the other, future internationally sponsored genomic research projects that could translate into personalized medicine applications will be in jeopardy in communities where genomic researchers neglect to consider local laws, beliefs, and needs. This paper discusses the opportunities and challenges for investigators and research institutions seeking to conduct genomic research in Nigeria. Specifically, we highlight the potential role of Nigerian laws, such as Nigeria’s National Code of Health Research Ethics and the role of local bodies, such as Community Advisory Committees, in promoting genomic research approaches that are appropriate for the local environment. This article thus contributes to a growing body of literature on global bioethics and personalized medicine in resource-limited settings.

Integrating the Wisdom and Experience of Indigenous Farmworkers to Improve Farmworker Safety and Health

Community advisory committees (CACs) increasingly are formed to cultivate partnerships between researchers and communities. This article details the processes used to recruit CAC members, the purpose and structure of the committees, members' motivation to participate, and examples of member input and influence. In-depth interviews, meeting notes, and partners' reflections were synthesized to identify key lessons regarding establishing and sustaining effective CACs. Findings highlight the need for partner agreement on the role of CACs, structured meeting procedures, intentional integration of CAC input into project activities, and training on sharing research information with the community. CAC members' expertise regarding indigenous culture and experiences increased the project relevance for workers and strengthened research and intervention efforts. Members also reported greater knowledge of safety, health, and workers' rights, and increased confidence to share information. This influence extends beyond the project and contributes to sustained change among CAC members and in the participating communities.

Community Advisory Committees

Community advisory committees (CACs) have come a long way since legislation was enacted to require Victorian metropolitan health services to establish CACs as formal structures to provide advice to boards on consumer participation. In its 8 years of operation, the Melbourne Heath CAC has developed the organization's capacity to effectively engage consumers. As a result, community participation is now incorporated into the strategic plans, business plans, key performance indicators, and quality activities.

Melhor isso do que nada! Participação e responsabilização na gestão dos riscos do Pólo Petroquímico de Camaçari (BA)

O objetivo da pesquisa foi analisar o modelo adotado na construção dos conselhos comunitários consultivos. O recorte empírico trata do Conselho Comunitário de Camaçari (BA), primeiro no país e referência para a implantação de outros. Observação participante e dezessete entrevistas foram as principais fontes de dados. O conselho se constitui num sofisticado mecanismo de docilização e responsabilização pela disseminação de uma ideologia organizacional hegemônica e de modos de governança neoliberais.

Partnerships and participation in conducting poverty-related health research

Partnerships and participation are important principles of primary health care and increasingly are advocated in poverty-related health research. These concepts were central to our study of low-income Canadians’ use of health-related services and supports. We created partnerships by including community members on the research team, establishing a community advisory committee, involving community agencies in recruitment and interviews, and obtaining stakeholder perspectives on the research findings. We fostered participation of low-income people by including their perspectives during the design and implementation of the study, reducing barriers for participation, and using peer interviewers. Despite the successes of these strategies for promoting partnerships and participation, challenges emerged in relation to maintaining involvement of stakeholders and ensuring adequate opportunities for research capacity building. Stakeholders and lowincome people identified policy and service delivery changes that would enhance accessibility to health-related services as well as potential barriers that influence change efforts. Participants emphasized the need to view poverty as ‘everyone’s business’, which necessitates participation and partnerships with people living in poverty, with service providers, and with policy influencers. Our findings suggest, however, that people living in poverty encounter barriers to participation, and that further efforts are needed to obtain their input in the development of programmes, services, and policies. We recommend that primary health care research include community partners on the research team, community advisory committees and perspectives of policy makers and service providers. Researchers require adequate funding to develop and maintain partnerships with stakeholders, to train and support vulnerable people in developing skills and confidence as active research participants and to communicate the research to relevant stakeholders. We also recommend that evaluation of the participatory process be built into the research design.

Supporting Families

The Family-Centered Preschool Model is a family support model for center-based preschool programs. The model utilizes family consultants—parents of children with disabilities—to augment the support provided by classroom professionals. Family consultants coordinate and facilitate formal and informal family supports, maintain a close liaison with classroom program staff, and represent parents on district/ agency and community boards, councils, task forces, and advisory committees. Family supports include linking families to community resources, providing requested information through a variety of formats, assisting families in various aspects of the special education process (e.g., Individualized Education Program meetings), and helping families in the transition to school-age programs. The model includes a curriculum for the initial training of family consultants, staff training, and materials to support the functions of the family consultants. The model was implemented for 5 years in an urban school district, and evaluation data from family and staff interviews identified some of the benefits. The authors also provide recommendations for adoption of the model.