Community Advisory Group Research Articles

Water Is K’é: Learning from the Navajo Community to Promote Early Child Health

Abstract: Background: Drinking water instead of sugary drinks is key to reducing health disparities. Since beverage habits are shaped by complex personal, community, and environmental factors, community input is critical to design any intervention promoting water. Objectives: We worked with community partners to design a program to promote healthy beverage habits among young Navajo children. Methods: The socioecological model, community-based participatory methods, and strengths-based principles shaped our process. In Phase 1, multigenerational feedback taught us about the cultural importance of water and how water quality concerns influence beverage choices. In Phase 2, our Water is K’é Community Advisory Group played a leading role to design the intervention centered around cultural connection, health literacy, and water access. Lessons Learned: Water is K’é was created through community partnership. Community listening and mini-pilots take time but allows the program to meet community’s needs and interests. Conclusions: The solutions to health disparities lie within the community itself.

Applying Engagement Marketing And Human-Centered Design to Cocreate a Digital Decision Support Tool for Research Participation with LGBTQIA+ Community Members.

We used engagement marketing and human-centered design principles to cocreate a digital decision support tool for research participation with LGBTQIA+ community members to help them make an informed decision about joining the All of Us Research Program. Building on results from the research phase, we conducted eight problem validation and solutioning workshops with 48 LGBTQIA+ community members. Community members validated barriers to engagement with All of Us and brainstormed 47 potential digital solutions. We developed potential solutions into 27 concepts (descriptive text and visual storyboards) and assessed acceptability, appropriateness, feasibility, and engagement in a set of 10 concept testing workshops with 57 community members. We developed one of the highest rated concepts, the "Decide Later Tool," into a prototype and tested it with 45 LGBTQIA+ community members and 14 community advisory group members to assess acceptability, appropriateness, feasibility, usability, and engagement. Prototype testing participants indicated that the tool provides information to help with decision making, provides a clear value or benefit to them, was designed for someone like them, provides the right amount of information, and is easy to use; they also offered constructive feedback to improve it. Across the design and development phases, community members indicated that the process of engaging them demonstrated integrity, competence, dependability, trust, and collaboration; fostered a sense of connection to All of Us; and will enhance future engagement with All of Us. Our next steps are to develop the prototype into a fully functioning web tool and pilot test it in community and health care settings.

Implementation of a population mental health and wellness text-message service: a mixed-methods study

BackgroundDespite the growing adoption of digital health tools as a means to support mental health, many individuals remain unaware of the variety of mental health resources available to them through this format. To address this knowledge gap, this study advanced the design, development, and implementation of a text-based service called SaskWell to raise awareness of evidence based mental health resources and create more immediate connections to these tools. The two primary objectives of the study were to assess and evaluate the adoption of SaskWell by focusing on user acceptance, satisfaction, and perceived benefit, and to identify factors which contributed to user engagement with the SaskWell text-based service. Both quantitative and qualitative data contributed to the final study results.ResultsThis study utilized a co-designed text-messaging service to provide residents of Saskatchewan an important connection to digital mental health and wellness resources during the height of the COVID-19 pandemic. Using the RE-AIM framework as an implementation guide, four distinct cycles of SaskWell were delivered with modifications to the service in each subsequent cycle based on user engagement, feedback, and the direction of a community advisory group. Quantitative data was collected through user engagement text message response data, along with enrollment and exit surveys, while semi-structured interviews served as the primary means of qualitative data collection. In addition to the quantitative user data, these user interviews resulted in themes exploring motivation to sign-up for the service, perceptions of texting as a mechanism to deliver mental health resources, the impact of SaskWell on mental health and well-being, and beliefs on the future potential of text-based mental health supports.ConclusionsBoth the user engagement survey and the qualitative data supported the worth of ongoing efforts to refine and extend the use of text messaging as a means to engage citizens around the awareness and use of digital mental health and wellness resources. As the pandemic has receded into the background in many peoples’ daily lives, for healthcare providers, and others who continue to be impacted more heavily by the persistent challenges of this global event, this type of service may continue to be timely.

Assessing Employment Needs of People With Mental Illness: A Photovoice Study

Abstract Date Presented 03/22/24 This Photovoice study assessed employment needs of people with mental illness to inform a community advisory group for identifying a course of action to address unemployment, a social determinant of mental health. Primary Author and Speaker: Chinyu Wu Contributing Authors: Anna Gray, Janet Paleo, Adridana Barbosa

Building the African American/Black Community's Capacity to Elucidate Factors for High Smoking Rates in Jackson, MS: Results from Implementing a Community-Led Needs Assessment.

Although smoking has decreased dramatically over the last 50years, reductions are uneven by race and income, specifically in the Southern United States. There is a need for intentional collaboration with communities located where large tobacco disparities exist to make lasting change. Using community-based participatory research principles, we provided intensive capacity building to a community advisory group (CAG) of 14 Jackson, MS, residents to conduct a community-led needs assessment. The aim of the community-led needs assessment was to investigate firsthand why the community smokes and the impacts of smoking-giving the CAG voice and choice to work towards reducing tobacco-related harms and inequities. From October 2020 to September 2021, CAG members conducted thirteen interviews and nine focus groups, reaching 54 residents. We analyzed the data using a thematic and in vivo approach. Participants reported smoking is used to cope with systemic socio-economic issues (e.g., racism, poverty). Smoking is normalized in the community through continued use, ease of purchase, visibility of tobacco retailers, and lack of conversations or questioning surrounding smoking. Participants felt that peer and family use, addiction, and inaccessible smoking resources were the most influential factors driving smoking behaviors. This community engagement approach empowered residents to design and implement a comprehensive needs assessment resulting in rich data-a needed approach for a community experiencing enduring health inequities. Communities need to be engaged and invested in from the beginning as equal partners to learn, investigate, and develop community-relevant and innovative solutions to address tobacco social norms.

When I can be my whole authentic self, I feel safe and know that I belong: a photovoice study exploring what culturally safe pregnancy care is to Karen women of refugee background in Victoria, Australia

ABSTRACT Objectives Inequitable pregnancy care experiences and outcomes disproportionately affect refugee background women in Australia. Culturally safe care is essential for achieving health equity, however, cultural safety can only be determined by the person receiving care. To our knowledge, women of refugee background in Australia are yet to be asked what culturally safe pregnancy care is to them. Specifically, this study aimed to explore what culturally safe pregnancy care is to Karen women (from Burma) of refugee background. Design A photovoice study founded on community-based participatory research principles was undertaken with a Karen community of refugee background living in Victoria, Australia. A community advisory group was established, guiding study design and conduct. Five S’gaw Karen-speaking women with experience of pregnancy care in Australia were invited to take photos within their community. Participants shared their photos and stories with each other in four online discussion groups. Results Reflexive thematic analysis guided by a critical constructionist lens developed three themes: Building foundations for belonging; cultivating reciprocal curiosity; and storytelling as an expression of self and shared power. These themes sit within the overarching theme When I can be my whole authentic self, I feel safe and know that I belong. Conclusion When Karen women can embrace their cultural and spiritual identity without fear of discrimination, including racism, culturally safe pregnancy care is possible. This study contributes to the design and delivery of maternity services by providing insights that can enhance equitable and culturally safe pregnancy care for Karen women of refugee background.

One size doesn't fit all: methodological reflections in conducting community-based behavioural science research to tailor COVID-19 vaccination initiatives for public health priority populations.

Promoting the uptake of vaccination for infectious diseases such as COVID-19 remains a global challenge, necessitating collaborative efforts between public health units (PHUs) and communities. Applied behavioural science can play a crucial role in supporting PHUs' response by providing insights into human behaviour and informing tailored strategies to enhance vaccination uptake. Community engagement can help broaden the reach of behavioural science research by involving a more diverse range of populations and ensuring that strategies better represent the needs of specific communities. We developed and applied an approach to conducting community-based behavioural science research with ethnically and socioeconomically diverse populations to guide PHUs in tailoring their strategies to promote COVID-19 vaccination. This paper presents the community engagement methodology and the lessons learned in applying the methodology. The community engagement methodology was developed based on integrated knowledge translation (iKT) and community-based participatory research (CBPR) principles. The study involved collaboration with PHUs and local communities in Ontario, Canada to identify priority groups for COVID-19 vaccination, understand factors influencing vaccine uptake and co-design strategies tailored to each community to promote vaccination. Community engagement was conducted across three large urban regions with individuals from Eastern European communities, African, Black, and Caribbean communities and low socioeconomic neighbourhoods. We developed and applied a seven-step methodology for conducting community-based behavioural science research: (1) aligning goals with system-level partners; (2) engaging with PHUs to understand priorities; (3) understanding community strengths and dynamics; (4) building relationships with each community; (5) establishing partnerships (community advisory groups); (6) involving community members in the research process; and (7) feeding back and interpreting research findings. Research partnerships were successfully established with members of prioritized communities, enabling recruitment of participants for theory-informed behavioural science interviews, interpretation of findings, and co-design of targeted recommendations for each PHU to improve COVID-19 vaccination uptake. Lessons learned include the importance of cultural sensitivity and awareness of sociopolitical context in tailoring community engagement, being agile to address the diverse and evolving priorities of PHUs, and building trust to achieve effective community engagement. Effective community engagement in behavioural science research can lead to more inclusive and representative research. The community engagement approach developed and applied in this study acknowledges the diversity of communities, recognizes the central role of PHUs, and can help in addressing complex public health challenges.

Engagement of a community advisory group to shape and build up participation in TB research

It is essential that communities at risk from TB are involved in TB research. Community advisory groups (CAGs) are one mechanism for involving communities in research and creating platforms for discussions between researchers and community members. We organised a CAG meeting with community members and people with lived experience in Ho Chi Minh City, Vietnam, to explore the community’s knowledge about TB and their perspectives on different diagnostic tests in Vietnam, a low-middle-income country with a high TB burden. Researchers shared basic information and addressed questions about TB. CAG members commented on preference of TB screening tests, and suggested that chest X-rays and blood tests were more acceptable than sputum tests because of the difficulty in sputum expectoration. In addition, clinical studies that required fewer visits to the hospitals would be preferred, even if this meant a greater reliance on blood sampling.

Indigenous approaches to health assessment: a scoping review protocol

BackgroundHealth assessment tools developed using mainstream or Western concepts have been widely used in clinical practice worldwide. However, even culturally adapted or culturally based tools may not be relevant in other social contexts if they are grounded in Western beliefs and perspectives. The application of mainstream assessment tools, when used in Indigenous populations, can lead to the inappropriate application of normative data and inaccurate or biased diagnosis of conditions as Indigenous concepts of health differ from Western biomedical concepts of health. Thus, considering the need for culturally meaningful, sensitive, safe, and unbiased health assessment approaches and instruments over recent years, tools have been developed or adapted by and with Indigenous populations in Australia, Aotearoa/New Zealand, Canada, and the United States. However, there is no existing systematic or scoping review to identify the methods and approaches used in adapting or developing health assessment tools for use with the Indigenous population in Australia, Aotearoa/New Zealand, Canada, and the United States.MethodsIn response to these gaps, we are working with a First Nations Community Advisory Group in Northern Ontario, Canada, to undertake a scoping review following the 2020 JBI methodology for scoping reviews. A systematic search will be conducted in PubMed, APA PsychINFO, CINAHL, MEDLINE, Web of Science, Bibliography of Native North Americans, Australian Indigenous Health info data set, and Indigenous Health Portal. Two reviewers will independently screen all abstracts and full-text articles for inclusion using criteria co-developed with an advisory group. We will chart the extracted information and summarize and synthesize the data. The summarized findings will be presented to a Community Advisory Group, including First Nations community partners, an Elder, and community members, and their feedback will be incorporated into the discussion section of the scoping review.DiscussionThis scoping review involves iterative consultation with the Indigenous and non-Indigenous scholars, First Nations Community Advisory Group, and community partners throughout the research process. This review aims to summarize the evidence on standard ethical approaches and practices used in Indigenous research while adapting or developing health assessment tools. It will inform the larger study focused on developing an Indigenous Functional Assessment tool. Further, it will seek whether the Indigenous ways of knowing and equitable participation of Indigenous people and communities are incorporated in the Indigenous research process.Systematic review registrationOpen Science Framework https://osf.io/yznwk.

Exploring Trauma- and Violence-Informed Pregnancy Care for Karen Women of Refugee Background: A Community-Based Participatory Study.

Women of refugee background experience poorer perinatal outcomes when compared to their local-born counterparts. Women of refugee background have often experienced trauma and are likely to encounter barriers to accessing health services in host countries which can exacerbate their recovery from trauma and contribute to poor health outcomes. Trauma- and violence-informed approaches to care offer opportunities to address barriers to pregnancy care which may, in turn, improve these poor outcomes. Trauma- and violence-informed care is a framework that acknowledges a person's experiences of trauma, recognises its impact and symptoms, and works toward resisting re-traumatisation by integrating knowledge into practice. Despite this, trauma- and violence-informed care in maternity care settings has rarely been explored from the perspectives of women of refugee background. This study aimed to explore trauma- and violence-informed pregnancy care from the perspectives of Karen women of refugee background using Community-Based Participatory Research methods. The lead researcher is a Karen-Australian woman with lived refugee experience. A Community Advisory Group was formed to support the study. Semi-structured interviews were conducted with seven Karen women of refugee background who had recently had a baby in Western metropolitan Melbourne, Australia. The data were analysed using Reflexive Thematic Analysis. Karen women shared what they considered to be important elements of trauma- and violence-informed pregnancy care. Three major elements were identified: (1) care design and accessibility; (2) promoting choice and control; and (3) trauma-informed interpreting. The critical importance of the interpreter-mediated setting was highlighted as women reported that they may not experience trauma- and violence-informed maternity care if they cannot access an interpreter or their relationship with the interpreter is unsafe. This study offers critical insights regarding the elements of trauma- and violence-informed pregnancy care that are important to Karen women of refugee background.

Public Health Accountability in Action: The King County Pandemic and Racism Community Advisory Group.

After a tumultuous 3 years of pandemic-, political-, and race-related unrest in the United States, the public is demanding accountability to communities of color (defined here as American Indian/Alaska Native, Asian, Black, Native Hawaiian/Pacific Islander, and Hispanic people) to rectify historic and contemporary injustices that perpetuate health inequities and threaten public health. Structural racism pervades all major societal systems and exposes people to detrimental social determinants of health. Disrupting structural racism within public health systems is essential to advancing health equity and requires organized partnerships between health departments and community leaders. As those who are most affected by structural racism, communities of color are the experts in knowing its impacts. This case study describes the King County Pandemic and Racism Community Advisory Group (PARCAG) and its use of an innovative accountability tool. The tool facilitated institutional transparency and accountability in the adoption of community recommendations. PARCAG was influential in shaping Public Health-Seattle & King County's COVID-19 and antiracism work, with 66 of 75 (88%) recommendations adopted partially or fully. For example, a fully adopted recommendation in May 2020 was to report King County COVID-19 case data by race and ethnicity, and a partially adopted recommendation was to translate COVID-19 information into additional languages. PARCAG members were recruited from a 2019 advisory board on Census 2020 and were adept at shifting to advising on COVID-19 and equitable practices and policies. Organizations that have made declarations that racism is a public health crisis should center the experiences, expertise, and leadership of communities of color in accountable ways when developing and implementing strategies to disrupt and repair the effects of structural racism and efforts to promote and protect public health.

Community perspectives on the use of extension offices for behavioral health

Rural communities experience more systemic health disparities than urban communities, particularly around behavioral health. Disparities include a lack of providers, few hospitals, lack of health insurance, stigma, and limited public transportation. This study explored the potential use of Cooperative Extension offices to serve as “hubs” for behavioral health services. We conducted six focus groups (n = 52) in rural communities with high rates of opioid use and misuse. Community stakeholders were asked about the potential benefits and barriers to using Cooperative Extension as a behavioral health hub and what role Extension can play in behavioral health. We identified four major themes related to the extension being used to address behavioral health: the organization is trusted, the organization could provide many services, potential structural and social barriers need to be addressed, and resources are necessary for success. The study found that Extension is trusted, lacks the stigma of a traditional behavioral health setting, and could provide prevention and/or recovery education and a connector to support services. However, Extension is not currently seen as a resource for behavioral health and may have structural barriers and create stigma by providing services. To address these barriers, it was suggested Extension partner with other organizations to extend the reach of existing resources (telehealth and support groups) while focusing on both prevention education and relationship building. Moving forward, participating counties will leverage their partners into a community advisory group to define next steps, develop processes and protocols and begin advertising services/resources, and provide continual feedback on how needs are being met and recommended improvements.

Determining the perceived acceptability of an intervention designed to improve health literacy around developmentally appropriate play during infancy, with a community advisory group of mothers, in Soweto, South Africa.

Children require opportunities to participate in unstructured, unrestricted active play as infants, to encourage positive health, socioemotional and developmental outcomes in life. Certain social and environmental factors in the home setting can limit participation in play, particularly in low resource settings. As caregivers are their infants' first teachers, they have the important role of providing opportunities and space for children to learn through play. This mixed methods, cross-sectional study aimed to test the acceptability of an intervention developed to improve health literacy around play and development with mothers from Soweto, South Africa. Fifteen mothers with infants aged 0-3 months were included to form a Community Advisory Group (CAG). Two rounds of focus group discussions (FGDs) were conducted to explore the understanding of, and barriers to play and development, and to determine the acceptability of an intervention prototype. The prototype included developmentally appropriate activities presented in video format, demonstrations of how to make toys, infographics and other educational material which would be delivered to participants as part of the intervention. A further questionnaire was administered to participants one week after the FGD to determine the acceptability of intervention activities which the participants completed at home, with their infants. Participants reported several barriers to play, including limited options for safe outdoor play, overcrowding, insufficient time, limited resources, and conflicting information. Participants suggested that the intervention content be delivered every 1-2 weeks, through a data-free app. Overall, the prototype activities tested at home were deemed acceptable. The reported barriers, together with reduced motivation and self-efficacy observed in the participants, guided the researchers to develop intervention content focused on improving health literacy in play and development, delivered in the form of an interactive mobile app. Future research will develop and test the efficacy of this intervention in a low resource setting in South Africa.

Developing Effective Community Collaborations: A Qualitative Case Study of Three High‐Quality Partnerships Set in Aotearoa New Zealand

There is widespread and growing support and requirement for researchers and larger organisations to collaborate with communities. This ensures that social, educational, or health programmes are relevant and acceptable and address the needs of groups that experience inequity. There is limited research about the processes and approaches that impact successful collaboration. The aim of this study was to identify the best‐practice processes used to develop and sustain collaborative partnerships between community members and formal organisations in Aotearoa New Zealand. Using a qualitative case study methodology and guidance from our community advisory group, we selected three effective collaborations with groups that experienced inequity in Aotearoa New Zealand. We examined these by reviewing their publicly available documents and conducting focus group discussions and interviews with key stakeholders. We coded and analysed transcriptions thematically to develop case study summaries of findings and then conducted cross‐case analysis to identify themes inherent in the data. Seven themes emerged from the data: (1) work together under Te Tiriti to ensure that collaborations are built on the articles of this founding document of Aotearoa New Zealand; (2) start before the beginning by forming strong relationships with diverse and representative community members; (3) walk the talk by using critically reflexive processes built on shared values and equal power relations; (4) use pencils not pens to implement ensuring an iterative project process; (5) recognise all contributions and especially the value of lived experience and local knowledge; (6) journey at a pace that allows all to participate; and (7) listen twice, talk once to give priority to hearing quieter voices. These seven practices can be utilised by other collaborative initiatives to increase genuine and power‐shared participation. These participatory processes can make sure that collaborative projects respect local knowledge, indigenous culture, and respond iteratively to community needs.

A Second Look: Reflecting on the Intersections of Community Engagement and Advisory Groups

A Second Look: Reflecting on the Intersections of Community Engagement and Advisory Groups

All Ears? How Museums Use Community Advisory Groups to Listen and Act towards Local Relevance and Engagement

All Ears? How Museums Use Community Advisory Groups to Listen and Act towards Local Relevance and Engagement

If I Were to Objectively Speak: Meanderings on Relationship Building Based on “Use” of Community Advisory Groups

If I Were to Objectively Speak: Meanderings on Relationship Building Based on “Use” of Community Advisory Groups

Priorities for data collection through a prospective cohort study on gender-affirming hormone therapy in Aotearoa New Zealand: community and clinical perspectives.

Introduction Gender affirming hormone therapy (GAHT) is an important aspect of health care for many transgender and non-binary (TNB) people, but little is known about the long-term outcomes for TNB people in Aotearoa New Zealand (NZ). Pathways to access GAHT are shifting from secondary care towards primary care, so this is an opportune time to commence local research on long-term health and wellbeing outcomes for people initiating GAHT. Aim This paper aims to report on the key findings from four meetings held to inform the design of a prospective cohort study to follow the journey of people initiating GAHT in primary and secondary care settings in NZ. Methods We worked with a community advisory group of six TNB young people and sought input from 14 health care providers involved in the care of TNB people initiating GAHT (GPs, secondary care doctors, and mental health providers). Semi-structured interview schedules were used to guide discussions. Template analysis was used to initially code data based on themes identified from the interview schedule and new themes from discussions were added. Results Participants shared ideas about recruitment and data collection priorities for baseline and follow-up surveys. These included understanding the journey to starting hormone therapy (information-seeking, decision-making), access to services for GAHT initiation, appropriateness of information provision, receipt of the first prescription, goals for and experience of GAHT, and the unique needs of non-binary people. Discussion Input from a TNB advisory group and health care professionals has informed the development of a survey that will be used to understand the experience of, and outcomes for, people starting GAHT in NZ. Findings from this planned prospective cohort study have the potential to improve access to GAHT for TNB people who wish to pursue this option.

Subaltern perspectives of developing communication campaigns: Re-examining the culture-centered approach in addressing health disparities

ABSTRACT A central component of the culture-centered approach is the co-development of communication infrastructures for health and wellbeing within subaltern communities. However, there is an absence in the representation of these infrastructures in esteemed journals. This is problematic for illuminating the tensions and complexities in bringing theory into practice from the perspective of community members. This study draws from two culture-centered projects to explore how communities make sense of the process of participating in building interventions, comprising 119 initial in-depth interviews with residents, 10 community advisory board focus groups, and 21 evaluative interviews. The residents’ narratives reveal a relationship between subalternity and distrust toward interventions delivered by providers outside of their community, emphasizing the need to create spaces of listening that anchor community relationships. The formation of relationships was crucial to the development of communication infrastructures, which continued beyond the study. The contributions to intercultural and international communication are discussed.

Engaging communities to inform the development of a diverse cohort of cancer survivors: formative research for the eat move sleep study (EMOVES)

BackgroundThere are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, 2022; Pang et al. in J Clin Oncol 34:3992–3999, 2016; Lythgoe et al. in Prostate Cancer Prostatic Dis 24:1208–1211, 2021). Our long-term goal is to enroll and follow a cohort of historically under-represented cancer survivors, to better understand modifiable risk factors that influence clinical and quality of life outcomes in these populations. Towards that goal, we describe herein how we applied community-based participatory research approaches to develop inclusive study materials for enrolling such a cohort.MethodsWe implemented community engagement strategies to inform and enhance the study website and recruitment materials for this cohort including: hiring a dedicated engagement coordinator/community health educator as a member of our team; working with the Helen Diller Family Comprehensive Cancer Center Office of Community Engagement (OCE) and Community Advisory Board members; presenting our educational, research, and study recruitment materials at community events; and establishing a community advisory group specifically for the study (4 individuals). In parallel with these efforts, 20 semi-structured user testing interviews were conducted with diverse cancer survivors to inform the look, feel, and usability of the study website.ResultsEngagement with community members was a powerful and important approach for this study’s development. Feedback was solicited and used to inform decisions regarding the study name (eat move sleep, EMOVES), logo, study website content and imagery, and recruitment materials. Based on community feedback, we developed additional educational materials on healthy groceries and portion size in multiple languages and created a study video.ConclusionsIncluding an engagement coordinator as a permanent team member, partnering with the institutional community outreach and engagement resources (i.e., OCE), and allocating dedicated time and financial support for cultivating relationships with stakeholders outside the university were critical to the development of the study website and materials. Our community guided strategies will be tested as we conduct enrollment through community advisor networks and via the state cancer registry.