Community-engaged Approach Research Articles

The study of life and food systems for Native Hawaiians based on their environment

Health and well-being are a function of familial relationships between Native Hawaiians and their land. As a result of settler colonialism, Native Hawaiians face systemic and social barriers, which impede their relationship to land, with implications of adverse health outcomes. This qualitative study explores changes in health among Native Hawaiians, with a specific focus on food systems and the environment. Community-engaged research approaches were utilized to recruit 12 Hawaiian adults. The major themes include the following: (1) health as holistic and a harmonious balance, (2) nutrition transition and current connections to ‘āina (land extending from the mountain to the sea; that which feeds or nourishes), and (3) food sovereignty and community solutions to uplift the Lāhui (Nation of Hawai‘i). Consideration of cultural values, community strengths, and traditional lifestyle practices may address health inequities and changes in food systems related to health that stem from colonization, determinants of health, and environmental changes.

Reflections on integrated research from community engagement in peatland restoration

Community engagement and integrated research are key approaches to solving complex socio-ecological challenges. This paper describes the experience of bringing together a team of natural and social scientists from Australia and Indonesia in the ‘Gambut Kita’ (translated as ‘Our Peat’) project. Gambut Kita aims to produce new knowledge and support efforts to successfully, and equitably, restore Indonesia’s tropical peatlands and ensure that livelihoods can be maintained on restored (rewetted) landscapes. The paper focuses on experiences of using community engagement for integrated research. It discusses three community engagement approaches used in the project—resilience, adaptation pathways and transformation approach (RAPTA), participatory rural appraisal (PRA), and community-led analysis and planning (CLAP). It also describes the qualitative analysis of 14 interviews with the project team of lessons learned in community engagement for integrated research. ‘Criteria for success’ from the literature on international development projects is used to assess progress. The findings highlight the specific complexities of working across countries and cultures. Successful community engagement is not so much about the ‘tool’ but about the trust, agency, and support to change. The tools do, however, have different strengths. PRA and CLAP can build deep community understanding and relationships. RAPTA has strengths in framing visions and pathways to the future, systems thinking, anticipatory learning, and taking a cross-scale systems view which is required to solve many of the problems manifesting at local or community scales. Similarly, success in integrated research is not just about individuals, but structures (e.g. explicit process) and infrastructure (e.g. access to technology). These findings suggest that integrated research needs special considerations in terms of design, and these relate across scales to individual researchers as well as teams, leaders and organisations. Integrated research projects need careful, inclusive, iterative management with a lot of interaction to learn from each other, build a common vision, achieve clarity of roles, and share emerging findings.

Lessons Shared: Implementation of a Randomized Clinical Trial for Alcohol Use Disorders with Five American Indian and Alaska Native Communities

This paper examines how five Tribal communities and an academic institution developed the Helping Our Native Ongoing Recovery Project. The goal of this study was to conduct a large randomized controlled trial using contingency management as an intervention for alcohol use disorders among 400 American Indian and Alaska Native (AI/AN) people. Using a community-engaged approach, including tenants of community-based participatory research and the Quality Implementation Framework, close collaboration between Tribal community and academic partners was essential to the research design and implementation. The process described has enhanced trust, positive relationships, and the successful cultural adaptation and implementation of the contingency management intervention with two of the five partnering communities. This work may provide insight for dissemination and implementation science among AI/AN communities and a process template for researchers who want to partner with Tribal communities to positively impact health outcomes.

Health Impacts of Perchlorate and Pesticide Exposure: Protocol for Community-Engaged Research to Evaluate Environmental Toxicants in a US Border Community.

BackgroundThe Northern Arizona University (NAU) Center for Health Equity Research (CHER) is conducting community-engaged health research involving “environmental scans” in Yuma County in collaboration with community health stakeholders, including the Yuma Regional Medical Center (YRMC), Regional Center for Border Health, Inc. (RCBH), Campesinos Sin Fronteras (CSF), Yuma County Public Health District, and government agencies and nongovernmental organizations (NGOs) working on border health issues. The purpose of these efforts is to address community-generated environmental health hazards identified through ongoing coalitions among NAU, and local health care and research institutions.ObjectiveWe are undertaking joint community/university efforts to examine human exposures to perchlorate and agricultural pesticides. This project also includes the parallel development of a new animal model for investigating the mechanisms of toxicity following a “one health” approach. The ultimate goal of this community-engaged effort is to develop interventions to reduce exposures and health impacts of contaminants in Yuma populations.MethodsAll participants completed the informed consent process, which included information on the purpose of the study, a request for access to health histories and medical records, and interviews. The interview included questions related to (1) demographics, (2) social determinants of health, (3) health screening, (4) occupational and environmental exposures to perchlorate and pesticides, and (5) access to health services. Each participant provided a hair sample for quantifying the metals used in pesticides, urine sample for perchlorate quantification, and blood sample for endocrine assays. Modeling will examine the relationships between the concentrations of contaminants and hormones, demographics and social determinants of health, and health status of the study population, including health markers known to be impacted by perchlorate and pesticides.ResultsWe recruited 323 adults residing in Yuma County during a 1-year pilot/feasibility study. Among these, 147 residents were patients from either YRMC or RCBH with a primary diagnosis of thyroid disease, including hyperthyroidism, hypothyroidism, thyroid cancer, or goiter. The remaining 176 participants were from the general population but with no history of thyroid disorder. The pilot study confirmed the feasibility of using the identified community-engaged protocol to recruit, consent, and collect data from a difficult-to-access, vulnerable population. The demographics of the pilot study population and positive feedback on the success of the community-engaged approach indicate that the project can be scaled up to a broader study with replicable population health findings.ConclusionsUsing a community-engaged approach, the research protocol provided substantial evidence regarding the effectiveness of designing and implementing culturally relevant recruitment and dissemination processes that combine laboratory findings and public health information. Future findings will elucidate the mechanisms of toxicity and the population health effects of the contaminants of concern, as well as provide a new animal model to develop precision medicine capabilities for the population.International Registered Report Identifier (IRRID)DERR1-10.2196/15864

Meaningful and deep community engagement efforts for pragmatic research and beyond: engaging with an immigrant/racialised community on equitable access to care

Primary healthcare access is one of the crucial factors that ensures the health and well-being of a population. Immigrant/racialised communities encounter a myriad of barriers to accessing primary healthcare. As...

Knowledge infrastructure and research agendas for quotidian Anthropocenes: Critical localism with planetary scope

The Anthropocene requires the development of new forms of knowledge and supporting sociotechnical infrastructure. While there have been calls for both interdisciplinary and community-engaged approaches, there remains a need to develop, test, and sustain modes of Anthropocene knowledge production that effectively link people working at different scales, in different sites, with many different types of expertise. In this Perspectives piece, we describe one such approach to Anthropocene knowledge production, centered in short-term Field Campuses that bring together community actors in cultural institutions, media, and government agencies with external academic researchers, bringing cultural analysis into the work of characterizing and responding to the Anthropocene. We argue that it is important to build public knowledge infrastructure that allows people to visualize and address many intersecting scales and systems (ecological, atmospheric, economic, technological, social, cultural, etc.) that shape the Anthropocene at the local level.

Using health data for decision-making at each level of the health system to achieve universal health coverage in Ethiopia: the case of an immunization programme in a low-resource setting

BackgroundFor evidence-based decision-making, there is a need for quality, timely, relevant and accessible information at each level of the health system. Limited use of local data at each level of the health system is reported to be a main challenge for evidence-based decision-making in low- and middle-income countries. Although evidence is available on the timeliness and quality of local data, we know little about how it is used for decision-making at different levels of the health system. Therefore, this study aimed to assess the level of data use and its effect on data quality and shared accountability at different levels of the health system.MethodsAn implementation science study was conducted using key informants and document reviews between January and September 2017. A total of 21 key informants were selected from community representatives, data producers, data users and decision-makers from the community to the regional level. Reviewed documents include facility reports, district reports, zonal reports and feedback in supervision from the district. Thematic content analysis was performed for the qualitative data.ResultsRespondents reported that routine data use for routine decision-making was low. All health facilities and health offices have a performance monitoring team, but these were not always functional. Awareness gaps, lack of motivating incentives, irregularity of supportive supervision, lack of community engagement in health report verification as well as poor technical capacity of health professionals were found to be the major barriers to data use. The study also revealed that there are no institutional or national-level regulations or policies on the accountability mechanisms related to health data. The community-level Health Development Army programme was found to be a strong community engagement approach that can be leveraged for data verification at the source of community data.ConclusionThe culture of using routine data for decision-making at the local level was found to be low. Strengthening the capacity of health workers and performance monitoring teams, introducing incentive mechanisms for data use, engaging the community in data verification and introducing accountability mechanisms for health data are essential to improve data use and quality.

A Pilot Outreach HIV Testing Project Among Homeless Adults.

Background: The Memphis metropolitan statistical area (MSA) represents a Deep Southern U.S. city disproportionally affected by the ongoing transmission of new HIV cases as well as those diagnosed in late-stage disease. This region is a subset of nine states, including Memphis, Tennessee (project site), driving the epidemic in the United States. Memphis ranks 4th among all U.S. MSAs for new HIV infections and has been identified in the CDC's Ending the HIV Epidemic Initiative as a high HIV burden geographic focus area. The Memphis Ryan White Part A Program conducted a pilot project among adults seeking services in Memphis emergency and transitional housing shelters to offer on-site, rapid HIV testing. In this paper we describe the results from this aforementioned pilot study, including the rate of HIV test acceptance and potential factors associated with a history of HIV testing in Memphis.Methods: Community-engaged research approaches were employed via a partnership between the local health department, a federally qualified faith-based health center, and an academic university. An interviewer-administered survey to measure potential factors associated with HIV testing history and voluntary HIV testing services were offered to adults living in transitional housing establishments. Bivariate chi-square analyses were performed to determine the association between predisposing, enabling, and need variables with HIV testing history in the past 12 months.Results: Survey respondents (n = 109) were mostly cisgender male (n = 96; 88.1%), African American (n = 79; 72.5%) and reported engaging in condomless sex in the past 12 months (n = 55; 50.5%). Acceptability and uptake of HIV testing was high (n = 97; 89.0%).Conclusions: Implementing rapid HIV testing programs outside of traditional health care settings is a strategy that can be used to engage high-risk individuals and those unaware of their HIV status to get tested. To our knowledge, this study represents the first that documents HIV testing acceptance rates offered outside of traditional health care settings for homeless and transitionally housed adults in a Deep Southern state.

Using photovoice and emotional maps to understand transitional urban neighborhoods

The built environment influences our use and experience of place, as well as emotions and well-being. It is important to understand how people associate emotions with urban places, or create “subjective” urban experiences in order to regenerate neighborhoods that are sensitive to our mental and emotional health and well-being. In this study, we analyzed photovoice-generated photos (n = 265), focus group and interview transcripts, and emotional maps as part of a brownfield revitalization planning effort in a post-industrial transitional neighborhood of Philadelphia, USA. We coded 13 themes to represent places, spaces, or topics and documented eight primary emotions associated with the photos. Joy was the most mentioned emotion, although the total number of negative emotions (e.g., sadness, anger, and disgust) far exceeded positive ones. Emotional maps revealed positive and negative hotspots and displayed how a single location or topic could trigger multiple contrasting or complementary emotions. A major contribution of this study is its methodological novelty of creating emotional maps with data collected from photovoice, interviews, and focus groups. Another contribution is an innovative community engagement approach involving underrepresented stakeholders in the process of planning for the revitalization of a transitional neighborhood facing pressure from development and gentrification.

A community-engaged approach to examining barriers and facilitators to accessing autism services in Korean immigrant families.

This study adopted a community-engaged approach to explore Korean parents’ perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Understanding the experiences of culturally and linguistically diverse families and their children may help facilitate the development of more inclusive, appropriate, and culturally sensitive services. Semi-structured interviews with 20 Korean parents of autistic children were analyzed using a thematic approach. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children.Lay abstractPerceptions and experiences of culturally and linguistically diverse groups in accessing autism services in Canada are extremely limited. Thus, this study partnered with a community member to explore Korean immigrant parents’ perceptions of barriers and facilitators to accessing autism services in British Columbia, Canada. Interviews were conducted with 20 Korean parents of autistic children. Barriers and facilitators at the system, provider, and family/cultural level were identified. Barriers at the system level included delays and waitlists for services, and ineffective school policies to address child behavioral challenges. At the provider level, barriers included a lack of qualified professionals, negative attitudes, and lack of guidance navigating services. For family/cultural-related barriers, these included language and communication difficulties, out-of-pocket costs, and stigma impeded service access. Facilitators at the system level included family-centered care and prioritization of mental health supports. At the provider level, strengths included culturally competent and bilingual professionals. The family/cultural-related facilitators identified were informal support networks, characteristics of the parent, and connections to cultural community organizations. The findings emphasize the need to understand and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children.

Trauma-informed neighborhoods: Making the built environment trauma-informed

Trauma is a response to a deeply distressing or disturbing event, such as sexual assault, violent crime, or childhood abuse. Trauma has impacted the majority of Americans, with racial/ethnic minority and socioeconomically disadvantaged populations being disproportionately affected. Extensive evidence demonstrates trauma’s harmful effects on physical and psychosocial functioning and healthcare costs. Over the past decade, there has been greater recognition of the need to respond to trauma across various care delivery and program settings. Such recognition led to development of trauma-informed care, an approach that acknowledges trauma’s widespread impact and delivers care in a manner to promote healing and avoid re-traumatization. To date, trauma-informed approaches have been applied to clinical interventions, social programs, and community organizations. However trauma-informed approaches have not been widely applied to the built environment. Here, we propose the concept of a trauma-informed neighborhood. The idea of a trauma-informed neighborhood has not been elucidated in public health or medicine, yet merits attention because physical aspects of the neighborhood environment, such as lighting, traffic density, noise, and greenspace, may either trigger trauma or promote healing for individuals and communities. Research using geospatial, population health, and community-engaged approaches is needed and could build from the existing literature on how the built environment impacts mental health. Evidence would have direct implications for public policy and urban planning, particularly for neighborhoods where residents bear a disproportionate trauma burden. Until the built environment is routinely included in trauma-informed efforts, a key setting that influences trauma recovery, health, and well-being will remain overlooked.

Community-Engaged Approaches to Cervical Cancer Prevention and Control in Sub-Saharan Africa: A Scoping Review.

Background: Cervical cancer remains one of the top causes of cancer mortality among African women. Cervical cancer screening and early detection and treatment of precancer is one of the evidence-based interventions to reduce incidence and mortality. The application of community-based participatory research (CBPR) has been used in the United States to improve participation in screening and reduce cervical cancer disparities. However, it is unclear whether these engaged approaches have been used in sub-Saharan African to address disparities related to cervical cancer mortality.Objectives: Highlight community engagement in cervical cancer prevention and control in Sub-Saharan Africa (SSA), describe the community engagement efforts that are currently being used, and to describe the best practices for community engagement toward the end-goal of cervical cancer prevention and control.Methods: We searched PubMed, Embase, CINHAL, African Journals Online (AJOL), and African Index Medicus-WHO from inception until June 8, 2020. After screening 620 titles and abstracts, and reviewing 56 full-text articles according to inclusion and exclusion criteria, 9 articles met the selection criteria and were included. Relevant data variables were extracted from the included articles and a narrative synthesis was performed.Results: Between 2005 and 2019, 9 articles describing research in Ghana, Kenya, Zambia, Senegal, South Africa, and Nigeria were included. These articles described work that largely took place in rural settings predominantly among women age 15–65 years. Leveraging community networks such as community health workers, religious organizations, traditional leaders, and educational institutions increased awareness of cervical cancer. Working within existing social structures and training community members through the research effort were promising methods for addressing the disparities in cervical cancer incidence and mortality among communities.Discussion: The findings of this scoping review have contributed to the understanding of which novel approaches to community-based practices can be used to address cervical cancer disparities among SSA communities that carry a disproportionate disease burden. Community engagement in the research process, while effortful, has shown to be beneficial to researchers and to the communities that they serve, and provides valuable next steps in the effort to address cervical cancer disparities in SSA.

New Mixed Methods Approach for Monitoring Community Perceptions of Ebola and Response Efforts in the Democratic Republic of the Congo.

Efforts to contain the spread of Ebola in the eastern Democratic Republic of the Congo (DRC) during the 2018-2020 epidemic faced challenges in gaining community trust and participation. This affected implementation of community alerts, early isolation, contact tracing, vaccination, and safe and dignified burials. To quickly understand community perspectives and improve community engagement, collaborators from the DRC Red Cross, the International Federation of the Red Cross, and the U.S. Centers for Disease Control and Prevention explored a new method of collecting, coding, and quickly analyzing community feedback. Over 800 DRC Red Cross local volunteers recorded unstructured, free-text questions and comments from community members during community Ebola awareness activities. Comments were coded and analyzed using a text-coding system developed by the collaborators. Coded comments were then aggregated and qualitatively grouped into major themes, and time trends were examined. Communities reported a lack of information about the outbreak and the response, as well as concerns about the Ebola vaccination program and health care quality. Some doubted that Ebola was real. The response used the feedback to revise some community engagement approaches. For example, 2 procedural changes that were followed by drops in negative community responses were: using transparent body bags, which allayed fears that bodies or organs were being stolen, and widening the eligibility criteria for Ebola vaccination, which addressed concerns that selectively vaccinating individuals within Ebola-affected communities was unfair. This system is unique in that unstructured feedback collected by local volunteers in the course of their work was rapidly coded, analyzed, and given to health authorities for use in making course corrections throughout the response. It provides a platform for local voices to be heard throughout an emergency response and provides a mechanism for assessing the effects of program adjustments on community sentiments.

COMMUNITY PARTICIPATION IN PREVENTION OF COMMUNICABLE DISEASES IN RURAL AREAS OF PAKISTAN: A REVIEW OF LITERATURE

BACKGROUND: There is huge burden of both communicable and non-communicable diseases in healthcare systems. Community engagement is the diverse beneficial relationship between community stakeholders, primary healthcare system and professionals over a wide variety of tasks, their role and participation in decision making for enhancing community health. OBJECTIVES: This paper focuses to present the use of Ladder of Community Participation as a framework to integrate community health problems in Pakistan. Additional focus is on local issues and the integration of the model according to socio-politico-economic structure of Pakistan METHODS: Research articles were reviewed from PubMed, Medline, EBSCO, and CINAHL. Different key words such as “community engagement”, “community participation”, “communicable diseases”, “Ladder framework”, were used along with focus on the most recent and human based studies. After thorough review of the abstracts, selected researches were used to integrate the concept of community engagement in prevention of communicable diseases. REVIEW: Review of the literature showed that local healthcare services alone cannot make sufficient efforts to uplift the health status of the communities. Community based collaborative interventions are often cost effective, sustainable and effective in managing outbreaks and other communicable diseases. It is imperative to engage the local communities and its stakeholders for an informative, collaborative and success oriented approach. Moreover, educating the community stakeholders for on-going basis can be an asset to the public health initiatives in the community. The ladder of community participation presented in this paper guides the public health workers and community stakeholders for step-wise integration of community and its resources in different programs about communicable disease prevention. CONCLUSION: This ladder presents a continuum of different approaches, which will help in planning program management, feasibility assessment, evaluating ongoing interventions along with modification, and expanding community engagement approaches.

A pilot study on the feasibility of testing residential tap water in North Carolina: implications for environmental justice and health

In 2015 alone, community water systems serving about 21 million Americans violated the United States Environmental Protection Agency's (US-EPA) water quality standards. While water at community treatment and distribution centers is regularly monitored and tested, little is known about pollutants in the water systems at the household level. This pilot study assessed the feasibility of (1) testing for the presence and concentration of 14 contaminants and physicochemical parameters in household tap water in a low-income neighborhood and (2) using community engagement for recruitment and citizen science approaches to data collection. We used a multistage approach that included geo-mapping to delineate testing sites, community engagement for recruitment and citizen science approaches to increase the response rate. We used a 14-in-one dipstick test designed to measure trace amounts of heavy metals, non-metallic elements, and physicochemical water properties in drinking water in a sample of 70 homes. In 50%, 25%, and 7% of water samples tested, the concentration of mercury, lead, and chromium, respectively, were higher than US-EPA drinking water standards. Citizen science approaches were effective for increasing response rates and low-income household participation in water quality testing. The overlap between poverty, older homes, and high concentrations of potentially toxic metals in drinking water presents concerns for community health. Our pilot community engagement and citizen science approaches are likely scalable and would be of benefit to both the scientific community and to municipalities with constrained budgets. Future studies may examine the role of the principles of environmental justice in the distribution and prevalence of toxic elements in drinking water.

Engaging multi-stakeholder perspectives to identify dementia care research priorities

ObjectivesThe purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research.MethodsUsing a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as “Not so important,” “Important,” or “Very important.” Priorities for dementia care were summarized by frequencies and proportions.ResultsA total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as “Very Important”. High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%).ConclusionsThis project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.

Developing a protocol for adapting multimedia patient-reported outcomes measures for low literacy patients.

Self-administration of patient-reported outcomes measures (PROMs) by patients with low literacy is a methodologic and implementation challenge. There is an increasing emphasis on patient-centered care and wider adoption of PROMs to understand outcomes and measure healthcare quality. However, there is a risk that the use of PROMs could perpetuate health disparities unless they are implemented in an inclusive fashion. We present a protocol to adapt validated, text-based PROMs to a multimedia format (mPROMs) to optimize self-administration in populations with limited literacy. We describe the processes used to develop the protocol and the planned protocol implementation. Our study protocol development was guided by the International Quality of Life Assessment (IQOLA) protocol for translating and culturally adapting PROMs to different languages. We used the main components of IQOLA's protocol to generate a conceptual framework to guide development of a Multimedia Adaptation Protocol (MAP). The MAP, which incorporates human-centered design (HCD) and takes a community-engaged research approach, includes four stages: forward adaptation, backward adaptation, qualitative evaluation, and validation. The MAP employs qualitative and quantitative methods including observation, cognitive and discovery interviews, ideation workshops, prototyping, user testing, co-creation interviews, and psychometric testing. An iterative design is central to the MAP and consistent with both the IQOLA protocol and HCD processes. We will pilot test and execute the MAP to adapt the Patient Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Short Form for use in a mixed literacy hand and upper extremity patient population in Baltimore, Maryland. The MAP provides an approach for adapting PROMs to a multimedia format. We encourage others to evaluate and test this approach with other questionnaires and patient populations. The development and use of mPROMs has the potential to expand our ability to accurately capture PROs in limited literacy populations and promote equity in PRO measurement.

Community-engaged Research Approaches: Multiple Pathways To Health Equity.

Highlights Popular models and unifying frameworks fail to capture variance in community‐engaged research (CEnR) CEnR projects vary in how they approach process and partnership, knowledge generation, and power An expanded taxonomy of community‐engaged research could cultivate new approaches to social change

PMS24 Decision-Making and Benefit-Risk Tradeoffs for Duchenne Muscular Dystrophy Treatment

Duchenne muscular dystrophy (DMD) is a rare pediatric-onset neuromuscular disorder. Emflaza, a corticosteroid, is the only therapy approved for all patients, regardless of genotype. Corticosteroids are standard of care and modestly delay the disease course. This study, led by Parent Project Muscular Dystrophy, uses a community-engaged approach to understand corticosteroid decision making and experiences. Teenagers and adults with DMD and parents participated in semi-structured interviews via Zoom led by experienced interviewers. Three vignettes were used to glean information about values in decision-making and willingness to try a new therapy that, compared to corticosteroids, had (1) improved efficacy, but worse side effects, (2) reduced efficacy, no side effects, and (3) improved efficacy, but no information on long-term risks or benefits. Data were systematically analyzed by corticosteroid-use and cohort using a rapid analysis approach. 25 respondents were parents and 16 living with DMD. 26 of DMD index cases were current corticosteroid users; 3 prior users; and 10 parents were deciding whether to initiate use in young children. Parents deciding to start corticosteroids were critical of options with more side effects despite increased benefits. Current users with DMD were more willing to try an option with improved efficacy and increased side effects, citing ability to manage current effects. They preferred that option to the one with uncertain long-term outcomes. Parents of corticosteroid-users preferred a treatment with improved efficacy, even with limited long-term outcome data. Current corticosteroid-users preferred improved efficacy even with worse side effects while non-users were unwilling to accept worse side effects despite added benefits. Parents of current users expressed more tolerance for uncertainty than patients. Most prior research in this patient population finds that, for novel therapies, expected benefits far exceeded potential risks in anticipated choices. Comparisons of approved versus novel therapies provide important data about motivations.

PMS26 Decision-Making and Experienced Benefits and Risks of Corticosteroids As a Treatment for Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is a rare pediatric-onset neuromuscular disorder. One therapy is approved for all patients, regardless of genotype: the corticosteroid Emflaza, which slows loss of function. There are limited patient experience data even though corticosteroids have been standard of care for over 10 years. This study, led by Parent Project Muscular Dystrophy, uses a community-engaged approach to understand corticosteroid decision making and anticipated or experienced benefits and side effects. Teenagers and adults with DMD and parents participated in semi-structured interviews via Zoom led by experienced interviewers. Data were systematically analyzed by corticosteroid-use and cohort using a rapid analysis approach. 25 respondents were parents and 16 living with DMD. 26 of DMD index cases were current corticosteroid users; 3 prior users; and 10 parents were deciding whether to initiate use in young children. Most respondents characterized corticosteroids as the only available treatment and better than no treatment. Users reported a range of benefits, with the majority indicating maintained strength, prolonged independent daily activities, and improved mobility. Users reported a range of bothersome side effects, the most common of which were weight gain and mood changes. Most parents of users reported difficult decisions to initiate corticosteroids in the pediatric period. Most users with DMD endorsed their parents’ choice and chose to continue use. Among non-users, individuals who discontinued did so due to side effects. Parents of children still deciding on use had serious concerns about negative effects and almost all reported they were unlikely to choose corticosteroids for treatment. Though corticosteroids were described as an imperfect and only moderately-effective therapy, users appreciated benefits and reported side effects as manageable. Decision making to initiate was challenging to many. Non-users had strong concerns about side effects. Parents of younger children especially were optimistic about future alternatives to corticosteroids.