Community Advisory Group Research Articles

Abstract A027: Creating partnerships to deliver community-based interventions for cancer prevention in a historically African American community

Abstract Be Well Communities™ is MD Anderson’s signature place-based approach for cancer prevention and control, working with communities to promote wellness and address modifiable risk factors for cancer. In this project, the planning phase of the Be Well Communities’ model was implemented in Acres Homes, a neighborhood in northwest Houston with more than 57,000 residents. While the changing demographics show increasing numbers of residents of Hispanic descent (43% of the population), Acres Homes still experiences effects of a legacy of Blacks experiencing poverty; more than half of the population of Acres Homes resides in census tracts that are considered areas of persistent poverty. Further, it is a medically underserved area with relatively high rates of unhealthy behaviors, as compared to Healthy People 2030 goals. To work toward addressing the disparities in health outcomes experienced by community residents, a community advisory group (Steering Committee) including residents, non-profit organizations, health care partners, city and county agencies, plus other stakeholders, was convened and aligned through a structured process to develop shared goals, foster multisector collaboration (as measured by a stakeholder survey administered twice), and enhance community capacity to improve health outcomes through development of a Community Action Plan. Clear, achievable goals were developed, multisector collaboration was enhanced, and more than 400 hours of capacity building support led to a Community Action Plan focused on healthy eating and active living, including 15 evidence-based interventions led by 18 organizations. The majority (93%) of the Steering Committee reports that this plan reflects community priorities and will reach the residents most in need. In the first 2 years of implementation nearly 40% of the residents of the community have been reached by programs including more than 5,000 residents participating in physical activity opportunities, classes and over 1000 individuals receiving outreach from a Community Health Worker within the safety-net hospital system to receive access to healthy food access and nutrition education programming. By listening and developing trust, the Be Well Communities team successfully worked with Acres Homes residents and organizations to enhance community capacity to address health inequities in one of Houston’s most historic communities. Citation Format: Ruth Rechis, Haley Gardiner, Katy Oestman, Stephanie Nutt, Michael T. Walsh Jr.. Creating partnerships to deliver community-based interventions for cancer prevention in a historically African American community [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A027.

Socially sustainable housing and built environments to support the health and social inclusion of older adults: protocol for a scoping review and stakeholder consultation

IntroductionHousing and the ageing population are issues that pose challenges for social, health and economic policies. Therefore, there is a need for more knowledge on how to design housing and...

Dementia needs assessment in Latine communities: strengths, challenges and policy opportunities in Wisconsin, USA

AbstractBackgroundLatinx populations are 1.5 times more likely to develop ADRD than non‐Latinx whites. Despite their heightened risk, they are more likely to be undiagnosed, under‐diagnosed and misdiagnosed. This is exacerbated by the lack of culturally appropriate information addressing ADRD to combat culturally specific stigma and misconceptions, as well as a dearth of culturally suitable resources. Infrastructure development that engages the community and community organizations can assist in overcoming these challenges by addressing community needs, capitalizing on existing resources, fostering sustainability, and promoting health equity.MethodUsing a modified version of the instruments included in the ACT on Alzheimer’s® Dementia Friendly Communities Toolkit, we evaluated the ADRD related needs and other social needs (e.g. transportation) that Latine communities experience in Madison, Wisconsin (USA). The instrument was distributed via email to community organizations and individuals serving Latine individuals in the area. Additionally, a community advisory group contributed to the identification of existing assets/priorities and strategic planning.ResultThe strengths identified for the community were: a sense of community that leads to individuals caring for one another and wanting to provide for one another’s needs, and the availability of a variety of community organizations and individuals who play a role in serving people living with dementia and their care partners. The absence of bilingual/bicultural resources to serve individuals was cited as the most significant challenge, followed by the lack of information regarding dementia, and the paucity of care options for those who are not eligible for Medicare or Social Security benefits. Table 1 reflects the most important services needed in the community. Reimbursement/Service fees (e.g., organizations use Medicare/Medicaid funding and do not have additional revenue sources to serve individuals without insurance), educational requirements for employees without a comparable requirement on language proficiency, and limited funding for multi‐language services were identified as pertinent policies.ConclusionCommunity members viewed dementia education and awareness of care services as crucial. Collaboration with current organizations to provide additional resources that enable them to implement culturally and linguistically appropriate processes for all is key to ensure the sustainability of future endeavors.

Be Well™ Acres Homes: a community-driven, evidence-based approach to reduce health inequities through sustained cross-sector partnership

PurposeBe Well Communities™ is MD Anderson’s signature place-based approach for cancer prevention and control, working with communities to promote wellness and address modifiable risk factors for cancer. The purpose of this paper is to describe implementation of the planning phase of the Be Well Communities model in Acres Homes which began in 2019.MethodsA community advisory group (Steering Committee) including residents, non-profit organizations, health care partners, city and county agencies, plus other stakeholders, was convened and aligned through a structured process to develop shared goals, foster multisector collaboration, as measured by a stakeholder survey administered twice, and enhance community capacity to improve health outcomes through development of a Community Action Plan.ResultsClear, achievable goals were developed, multisector collaboration was enhanced, and more than 400 h of capacity building support led to a Community Action Plan initially focused on healthy eating and active living, including 15 evidence-based interventions led by 18 organizations. The majority (93%) of the Steering Committee reports that this plan reflects community priorities and will reach the residents most in need.ConclusionBy listening and developing trust, the Be Well Communities team successfully worked with Acres Homes residents and organizations to enhance community capacity to address health inequities in one of Houston’s most diverse and historic communities.

Parent perspectives of engaging with a community paediatric clinic with linked child development supports in a disadvantaged area of Ireland.

Parent experiences of child health services can be used to understand their value and optimise the support provision to families during critical developmental periods. A gap in the literature exists regarding parental perspectives of linked child development supports, particularly in disadvantaged areas. This study examined parent experiences of the impact and value of a community paediatric clinic (Kidscope) with linked, multi-agency supports in a disadvantaged area of Ireland. Using a qualitative analysis design, 10 parents participated in one-to-one interviews. A Community Advisory Group consulted on interview schedules. Data was thematically analysed in line with Braun & Clarke's Framework. Five themes and twenty-two sub-themes emerged. Kidscope's linked, multi-agency approach was valuable for engaging families, addressing developmental delay, supporting readiness for education, and developing parent-child relationships. Relational working and a child and family centred model of care empowered parents to become active agents in children's health. Coronavirus disease 2019, national deficits in healthcare, and staff turnover impeded service delivery. Kidscope and linked supports work in partnership to disrupt the impact exclusion from healthcare has on vulnerable children and families. This study provides evidence of an effective integrated paediatric service delivery model designed around vulnerable children and families and highlights areas for improvement.

Exploring the health-related decision-making experiences of people with chronic kidney disease and their caregivers: A qualitative study.

This study aimed to explore the decision-making experience of patients with chronic kidney disease (CKD) and their caregivers. This was a qualitative descriptive study of the decision-making experiences of individuals with stage 3-end-stage CKD and their family caregivers. One-on-one, semistructured interviews were conducted using a guide developed and approved by a community advisory group. Data were analyzed using thematic analysis. Three themes were identified: (1) decisions triggered by declining health and broad in scope, (2) challenges to decision-making and (3) factors influencing decision-making. Participants' experiences with health-related decision-making demonstrated that decisions were triggered when health declined. Yet, decisions that impact disease progression were being made in stage 3. Decision-making was made difficult due to lack of information, complex co-morbidities, and poor resource utilization. However, the structure and nature of the medical appointment, supportive caregivers, and resources served to remove challenges. Decision-support interventions must train patients and caregivers to be empowered participants in answer-seeking behaviours upstream of advanced illness. This work was conducted in full collaboration with a community advisory board consisting of patients with CKD, caregivers and clinicians. These members are noted in the acknowledgement section, and those who worked with the team to develop the interview guide, study protocols, and manuscript preparation are included as authors. As part of their role, advisory members met monthly, providing input on recruitment, study progress, inclusion of diverse voices and added relevance to study findings.

Centering Reciprocity and Accountability in Community-Based Research: How Meaningful Relationships with a Community Advisory Group Impacted Survey Development

Community advisory boards (CAB) or groups (CAG) are frequently included in qualitative community-based research (CBR), particularly in the early phases of assessing need, impact, and design of a research project. Projects with emancipatory, liberatory, or decolonial emphases include CAGs in the spirit of inclusivity, representation, transformation, truth-telling, and participation, but the methodological value and impact of such groups often remains under-explored in reports about the research. It is also relatively uncommon to use CAGs in quantitative research. In our survey research about post-secondary instructors’ experiences of receiving student disclosures of gender-based violence, we used a time-limited, task-specific CAG to assist with survey development. In this report from the field, we discuss our approach to the inclusion of a CAG in our research, which emphasized reciprocity and accountability to community, and we explore how the use of a CAG directly impacted and strengthened the quantitative study.

Emergency department patient-centred care perspectives from deaf and hard-of-hearing patients.

Deaf and hard-of-hearing (DHH) patients are a priority population for emergency medicine health services research. DHH patients are at higher risk than non-DHH patients of using the emergency department (ED), have longer lengths of stay in the ED and report poor patient-provider communication. This qualitative study aimed to describe ED care-seeking and patient-centred care perspectives among DHH patients. This qualitative study is the second phase of a mixed-methods study. The goal of this study was to further explain quantitative findings related to ED outcomes among DHH and non-DHH patients. We conducted semistructured interviews with 4 DHH American Sign Language(ASL)-users and 6 DHH English speakers from North Central Florida. Interviews were transcribed and analysed using a descriptive qualitative approach. Two themes were developed: (1) DHH patients engage in a complex decision-making process to determine ED utilization and (2) patient-centred ED care differs between DHH ASL-users and DHH English speakers. The first theme describes the social-behavioural processes through which DHH patients assess their need to use the ED. The second theme focuses on the social environment within the ED: patients feeling stereotyped, involvement in the care process, pain communication, receipt of accommodations and discharge processes. This study underscores the importance of better understanding, and intervening in, DHH patient ED care-seeking and care delivery to improve patient outcomes. Like other studies, this study also finds that DHH patients are not a monolithic group and language status is an equity-relevant indicator. We also discuss recommendations for emergency medicine. This study convened a community advisory group made up of four DHH people to assist in developing research questions, data collection toolsand validation of the analysis and interpretation of data. Community advisory group members who were interested in co-authorship are listed in the byline, with others in the acknowledgements. In addition, several academic-based co-authors are also deaf or hard of hearing.

Establishing a Community Advisory Group to Enhance Community Participation in Clinical Research

Establishing a Community Advisory Group to Enhance Community Participation in Clinical Research

Co-participation of Community Advisory Group to develop, execute and disseminate a Covid-19 qualitative research study in India

Co-participation of Community Advisory Group to develop, execute and disseminate a Covid-19 qualitative research study in India

Community Informed Recruitment: A Promising Method to Enhance Clinical Trial Participation.

Low recruitment rates in palliative care clinical trials amongst Black and rural individuals have been attributed to lack of trust and procedural barriers. Community engagement strategies have increased clinical trial participation of under-represented populations. Describe a successful community-engaged recruitment strategy in an ongoing multi-site randomized clinical trial (RCT). Using community-based participatory research principles and input from a prior pilot study's community advisory group (CAG), we designed a novel recruitment strategy for Community Tele-Pal, a three-site, culturally based palliative care tele-consult RCT for Black and White seriously ill inpatients and their family caregivers. Local site CAGs helped design and implement a recruitment strategy in which a CAG member accompanied the study coordinators to introduce the study to eligible patients. Initially, CAG members could not accompany study coordinators in person due to pandemic restrictions. Hence, they created videos of themselves introducing the study, just as they would have done in person. We examined outcomes to date by the three recruitment methods and race. Of the 2879 patients screened, 228 were eligible and approached. Overall, the proportions of patients who consented 102 (44.7%) vs. not consented 126 (55.3%) were similar by race- White (consented= 75 [44.1%]) vs; Black (consented=27 [46.6%]). Proportionally, consent rates favored CAG-involved methods: coordinator only- 47 approached and 13 (12.7%) consented vs. coordinator/CAG video-105 approached and 60 (58.8%) consented. A novel community-enhanced recruitment strategy demonstrated the potential to increase clinical trial participation from historically under-represented populations.

Academic-community solidarities in land occupation as an Indigenous claim to health: culturally centered solidarity through voice infrastructures

In this work, we explore the role of land in Indigenous theorizing about health, embodied in a land occupation that resisted a climate-adaptive development project imposed on the community from the top down by the local government. The proposed development project of building a stop bank on the Oroua River sought to alienate Māori from the remnants of the land. Embedded in and emerging from a culture-centered academic-community-activist partnership, an advisory group of Māori community members om the “margins of the margins” came together to participate in the occupation of the land to claim it as the basis for securing their health. This study describes the occupation and the role of our academic-activist intervention in it, theorizing land occupation as the root of decolonizing health emerging from Indigenous struggles for sovereignty (Tino rangatiratanga). The community advisory group members brought together in a culture-centered intervention, collaborated in partnership with the academic team, generated video narratives that resisted and dismantled the communicative inversions produced by the settler colonial state to perpetuate its extractive interests and produced communicative resources that supported the land occupation led by the broader Whānau. This study concludes by arguing that the culture-centered approach offers a meta-theory for decolonizing health communication by building voice infrastructures that support Indigenous land struggles.

Iterative hypothesis testing in HIV vaccine research: moving towards success.

Iterative hypothesis testing in HIV vaccine research: moving towards success.

Co-designing interventions to ‘live well’: experiences and perceptions of the Genetic, Undiagnosed and Rare Disease (GUaRD) community

The Genetic, Undiagnosed and Rare Disease community faces a range of hurdles to live their ‘best life’ including physical, social and psychological barriers. They are also resilient and experiential experts with insight into what works and what could work for them. In this study, we aimed to identify and prioritise practical interventions the Genetic, Undiagnosed and Rare Disease community report could help them to ‘live well’. Using a three-stage approach, we first analysed data from a year-long Genetic, Undiagnosed and Rare Disease journal study to record all the practical interventions reported, either trialled or proposed. Second, after grouping the interventions (n = 19) into four themes (support for individuals with GUaRD; support for carers of people with GUaRD; education/employment; transition), we presented the interventions to members of the GUaRD community (people with GUaRD, their carers and peer support group members) across three focus groups (n = 13). Focus group transcripts were analysed for refinements to the interventions, barriers and/or enablers to enacting them and for any additional interventions suggested. From this analysis, the interventions were grouped to identify specific actionable activities (n = 8). Finally, these eight interventions were discussed in a workshop with the GUaRD Community Advisory Group and prioritised using the APEASE framework. Prioritised interventions targeted a range of stakeholders and included creating a lived experience video library, supporting peer support groups with grant applications, and educating clinicians about referring to peer support groups. Further research is now required to test these findings before trialling and evaluating an intervention to measure the impact on the GUaRD community.

Exploring Indigenous Community Conceptions of Parent Wellbeing: A Qualitative Analysis.

Using non-Indigenous perspectives of parental social and emotional wellbeing in the design and application of parent support programs can undermine program effectiveness as it may not account for Indigenous family structures and community values. With a clearer understanding of Indigenous parent wellbeing and its determinants, parenting interventions can be more appropriately designed and tailored to provide support for Indigenous families. This study utilised a community-based participatory action research approach involving collaboration between the research team, participants, and community advisory groups to explore Indigenous parents' and carers' conceptions of wellbeing. Participants' cultural perspectives on parent wellbeing were collected through semi-structured focus groups and in-depth interviews (N = 20). Thematic analysis was undertaken using theory-driven and interpretative phenomenological analysis. Eleven themes emerged as risk and protective factors across three domains: child domain (i.e., school attendance and education, respect, routine, development), parent domain (i.e., role modelling, self-regulation of body, self-regulation of mind and emotions, parenting strategies), and context domain (i.e., connections to family and kinship, community, access to services). It is noteworthy that parents reported three super-ordinate intersecting themes across all domains: connection to culture, Country, and spirituality. In addition, Indigenous parents' and carers' conception of their own wellbeing is closely linked to their children's wellbeing, their lived community context, and expected personal indicators. In recognising and working with this holistic view of Indigenous parent wellbeing, parent support programs can be optimally designed and implemented in Indigenous communities.

Enhancing media communication of health research: an evaluation of the Journalist in Residence Programme at the Malawi Liverpool Wellcome Trust Clinical Research Programme

Background: In 2012, the Science Communication department at the Malawi-Liverpool Wellcome Trust Clinical Research Programme (MLW) established the Journalist in Residence Programme (JIR) to train journalists and give them support when reporting health research stories for MLW. However, the programme had not been evaluated since its inception. We assessed the impact of media training and support through this programme on the development of health research reporting in Malawi. Methods: Qualitative approaches were used to conduct in-depth interviews with five journalists, two editors, two consultants, five researchers, and three Ministry of Health officials. Two focus group discussions were also conducted with selected Community Advisory Group members in Blantyre and Chikwawa. All interviews and focus group discussions were recorded and transcribed verbatim. Data analysis was conducted using Nvivo11. Results: The JIR programme has a positive impact on the development of health research reporting in Malawi. The quantity and quality of health research stories generated from Malawi Liverpool Wellcome Trust research have increased after introducing the programme. Additionally, journalists are motivated to write health research stories as they get training and support through the programme. The health research work being implemented by Malawi-Liverpool Wellcome Trust is appreciated by policy makers and the public at large through stories published by journalists in the programme. Conclusions: This evaluation found that the JIR programme is a powerful tool for achieving the development of health research reporting in Malawi.

NEEDS FOR SUPPORTING PEOPLE AGING WITH HIV: RESULTS FROM A CBPR COMMUNITY-NEEDS ASSESSMENT

Abstract Nearly half of people living with HIV in the U.S. are over age 50 and are navigating age-related changes while managing the complexities and challenges of HIV. People aging with HIV are an emerging community—it is imperative to understand the key issues faced by this community so to improve health outcomes and eliminate health disparities. This paper presents a CBPR approach by the SHARE board (a community advisory group comprised of older people living with HIV) and academic researchers. SHARE members conducted a mixed-methods needs assessment using a semi-structured interview guide they had developed, as well as a survey to determine community priorities for research, healthcare, and social services for people aging with HIV. SHARE members conducted 32 semi-structured interviews with individuals from across the country. From the 216 survey responses (mean age 55 years), 35% were Black, 30% were Hispanic, 50% were male, and 43% had been living with HIV for 11–15 years. 44% were fearful that long-term HIV medications will adversely affect them with aging. Triangulating interviews and surveys, financial strains and caregiving were primary age-related concerns. Affording medication and transportation were primary barriers to accessing healthcare. Most respondents had experienced stigma due to both age and HIV status. Respondents felt the most important areas for future research were optimizing management of multiple co-morbidities including HIV, and cognitive changes with HIV. Results from this community-led needs assessment identified key areas for interventions and research to address conditions disproportionately affecting the health of those aging with HIV.

Improving cancer care for underserved populations in an academic and community practice setting: protocol for a community health worker pilot navigation programme

IntroductionDelaying cancer treatment following diagnosis impacts health outcomes, including increasing patient distress and odds of mortality. Interventions to promote timely healthcare engagement may decrease patient-reported stress and improve quality of...

Developing an Ethnographic Community‐Based Participatory Research Dementia Study with Diverse Indigenous Populations: Indigenous Cultural understandings of Alzheimer’s disease and related dementias – Research and Engagement (ICARE) project

AbstractBackgroundDementia diagnoses have been increasing in Indigenous populations for over a decade and have now surpassed rates in non‐Indigenous populations in both Canada and the U.S. Prevalence rates of Alzheimer’s Disease and Related Dementias (ADRD) are approximately 3 times higher in Indigenous populations compared to White populations, with a 10‐year earlier onset . The ICARE project (NIH –5R56‐AG‐62307‐2) qualitatively explores the impact of ADRD in Indigenous populations across four diverse sites in Canada and the United States.MethodWe used a community‐based participatory research (CBPR) approach and a two‐eyed seeing framework to establish research partnerships with four Indigenous communities/regions: 7 Anishinaabe First Nations on Manitoulin Island, Ontario Canada; Red Lake Tribal Nation, Minnesota; Grand Portage Tribal Nation, MN; and the Oneida Nation, Wisconsin. The community engagement strategy supported the infrastructure needed to conduct dementia research in a culturally safe and appropriate way that respects Tribal Sovereignty.ResultIndigenous community‐based researchers were hired at each site and each underwent research training designed by the ICARE team. With guidance from local leadership, we established 8–12‐member community advisory groups at each site to serve as partners to guide the research. We collected preliminary ethnographic data on social determinants of health, demographics, community health, aging and dementia specific services. We demonstrated feasibility with pilot data collection of key informant interviews with Traditional Knowledge Keepers, Administrators, and Providers (n = 54) and sequential focus groups with local health care staff and formal caregivers that work with Indigenous older adults (n = 17).ConclusionNIH/NIA R56 funding resulted in the establishment of the community‐based infrastructure to support on‐going ADRD research in the four diverse communities. We demonstrated the feasibility of supporting community‐engaged dementia research partnerships with Indigenous communities who have differing cultural, political and historical contexts. This foundation is supporting the expansion of ICARE into a 5‐year ethnographic research study aimed at creating a foundational ethnographic database of AI/FN lived experience of ADRD across the disease trajectory that can be examined to inform the creation of culturally appropriate and safe approaches to improve dementia diagnostics, care, and outreach (NIH‐R01‐AG‐62307‐2).

Task-sharing with lay counsellors to deliver a stepped care intervention to improve depression, antiretroviral therapy adherence and viral suppression in people living with HIV: a study protocol for the TENDAI randomised controlled trial

IntroductionNon-adherence to antiretroviral therapy (ART) is the main cause of viral non-suppression and its risk is increased by depression. In countries with high burden of HIV, there is a lack...