Lay Community Members Research Articles

'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production.

In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other's sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights.

Bridging the Gap: Addressing Immigrant Health Through Community-initiated Screening Events

Abstract: Background: In areas of new-immigrant population growth, medical and social infrastructure may be lagging behind the needs of those who do not identify with the majority culture or language. Subsequently, information regarding this population's health status and access to care is limited. Montana's Hispanic population is one such group. Despite its low total population, the state has experienced unprecedented growth in the number of Spanish-speaking individuals and families over the last decade. Objectives: We utilized a community based participatory research framework to emphasize equal partnership between lay community members and researchers to ensure adherence to community priorities and strengthen trust between the two parties allowing for future collaboration. Based on community request, we designed four health screening events to provide needed health prevention services to the Hispanic community. Methods: Through collaboration with a Community Advisory Board, we created four health screening events to provide basic primary care services, including height and weight, blood pressure, diabetes, and mental health screenings. We partnered with a team of dental hygienists to provide oral preventive health. We conducted a cost-effectiveness analysis, comparing our approach to traditional health services. Study variables were analyzed using analysis of variance to examine differences in health outcomes between health screening events. Results: We screened 140 persons and found that 85.7% lacked health insurance and 80.7% lacked a usual source of care. We also found overweight and obesity in 47.1% and 27.1%, respectively, and hypertension in 63.6%. Services provided by the health screening events were up to $239 less expensive than comparable services provided at local health centers. Conclusions: Working directly with the community, we designed and implemented health prevention events which served to meet a growing need and to identify and address health concerns among the Hispanic immigrant community.

Teamwork in community health committees: a case study in two urban informal settlements

BackgroundCommunity health committees (CHCs) are mechanisms for community participation in decision-making and overseeing health services in several low-and middle-income countries (LMICs). There is little research that examines teamwork and internal team relationships between members of these committees in LMICs. We aimed to assess teamwork and factors that affected teamwork of CHCs in an urban slum setting in Nairobi, Kenya.MethodsUsing a qualitative case-study design, we explored teamwork of two CHCs based in two urban informal settlements in Nairobi. We used semi-structured interviews (n = 16) to explore the factors that influenced teamwork and triangulated responses using three group discussions (n = 14). We assessed the interpersonal and contextual factors that influenced teamwork using a framework for assessing teamwork of teams involved in delivering community health services.ResultsCommittee members perceived the relationships with each other as trusting and respectful. They had regular interaction with each other as friends, neighbors and lay health workers. CHC members looked to the Community Health Assistants (CHAs) as their supervisor and “boss”, despite CHAs being CHC members themselves. The lay-community members in both CHCs expressed different goals for the committee. Some viewed the committee as informal savings group and community-based organization, while others viewed the committee as a structure for supervising Community Health Promoters (CHPs). Some members doubled up as both CHPs and CHC members. Complaints of favoritism arose from CHC members who were not CHPs whenever CHC members who were CHPs received stipends after being assigned health promotion tasks in the community. Underlying factors such as influence by elites, power imbalances and capacity strengthening had an influence on teamwork in CHCs.ConclusionIn the absence of direction and support from the health system, CHCs morph into groups that prioritize the interests of the members. This redirects the teamwork that would have benefited community health services to other common interests of the team. Teamwork can be harnessed by strengthening the capacity of CHC members, CHAs, and health managers in team building and incorporating content on teamwork in the curriculum for training CHCs.

Context of substance initiation among urban Native Americans: an exploratory retrospective case-control study.

Addiction is a significant problem among many Native American groups but has rarely been examined in urban populations. In particular, little is known about the context in which urban Native Americans first use substances. This study compares cases (people with a history of addiction) to controls (people without a history of addiction) on demographics, substance use history, context of first substance use, and polysubstance use. In addition, this appears to be the first study to overcome the lack of Native American professionals by employing and training lay community members to identify criteria of substance use disorders in survey participants. Employing community members helped foster trust that enabled the revelation of sensitive and often illegal activity. As a result, the investigators were able to recruit participants who likely would not have engaged with traditional researchers. The trained Native American lay research assistants recruited community members and administered surveys. They first asked questions regarding the criteria for substance use disorders. Individuals who were determined to have met criteria for a substance use disorder in the past were classified as cases (n=38) and those who never met such criteria were classified as controls (n=42). They then asked demographic, substance use, and polysubstance use questions. Lastly, eight cases and eight controls were randomly selected for a second interview by a licensed drug and alcohol counselor (LDAC) who conducted a blinded assessment regarding the presence or absence of a history of a substance use disorder. Both groups reported a relatively young age of first substance use (age 16 years for cases and age 15 years for controls). Alcohol was the first substance most commonly used in both groups. Controls reported first benzodiazepine use at a younger age than cases but no other significant differences were found. Both groups reported first obtaining their first drug from family, friends, or at home (rather than a party, bar, or store). Most commonly, the location of their first use of drugs occurred at a friend's home, a party, a bar, or school rather than at their own home. Cases were marginally more likely to report that their first drug use occurred with a friend rather than with a family member when compared with controls. The majority of both groups reported that their first drug use occurred with other Native Americans rather than with non-Native Americans. Polysubstance use was common in both groups (43-45%). There were no significant differences between the groups regarding polysubstance use. The LDAC arrived at the same determination as the trained research assistants on all eight cases and eight controls.

Abstract B014: The power of bidirectional learning: Bridging the gap between communities and scientists by promoting “inreach” and community-science bilingualism

Abstract Background: Medical mistrust and lack of clinical trial awareness are often cited as barriers to clinical trial enrollment for Black/African American and rural residents. However, our community needs assessment at the Virginia Commonwealth University (VCU) Massey Cancer Center (MCC), identified a striking discordance: our community reported high awareness of clinical trials and willingness to participate, but this was in contrast to their abysmal participation in research and/or clinical trials. Given the role of misinformation in perpetuating communication barriers between researchers and the community, we sought to determine if targeting scientists’ communication led by community feedback would decrease the barriers between science and community. We did so by connecting two most distal groups: basic scientists from the VCU-MCC cancer biology (CB) program and lay community members from urban and rural under-resourced neighborhoods within MCC’s catchment area. Methods: CB program researchers shared 10-minute presentations of their work with urban (Petersburg) and rural (Brunswick) community members. Thereafter, 30-minute semi-structured focus group discussions with a subset of attendees were audio recorded and transcribed verbatim; results were summarized using thematic analysis. Notably, the racial/ethnic makeup of both counties are such that Black/African American is the majority with Petersburg and Brunswick counties having 60% and 20% less White, respectively. Results: Seven themes emerged: (1) relevance and application of scientific knowledge, (2) improve comprehension and salience, (3) interactive visuals to connect with audience, (4) community values science to improve quality of life (advancement & sustainability), (5) authentic dialogue is critical for building trust and mutual learning, (6) there is limited knowledge of cancer biologists role, and (7) actionable steps that impact the cancer care continuum. Both urban and rural participants expressed an interest in understanding the application of the presented scientific knowledge to the lives of people that share aspects of their salient identities. A participant from the urban sample said, “… I would’ve loved to have had more knowledge on Black women, uh, prone to cancer over the White [women].” Rural participants generally thought that the verbage used in the presentations would not be easily understood by fellow laypeople suggesting the presenter “slow it down” and include “animated videos.” When asked what they would like scientists to focus on next, rural participants expressed interest in actionable steps that impact the cancer care continuum. One person stated, “Prevention things can never be heard enough…[and] how you deal with it.” Conclusions: Results reveal a striking opportunity to improve understanding among basic scientists on how they can be of value to both urban and rural communities. A video-based curriculum intervention for community biologists to improve community-science bilingualism and promote bidirectional learning and engagement is underway. Citation Format: Bianca Owens, Maghboeba Mosavel, Katelyn Schifano, Josly Pierre-Louis, Stephanie Sullivan, Vanessa Sheppard, Robert Winn, Katherine Tossas. The power of bidirectional learning: Bridging the gap between communities and scientists by promoting “inreach” and community-science bilingualism [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B014.

Prior health promotion experience and intervention outcomes in a lay health advisor intervention.

Training lay community members to implement health promotion interventions is an effective method to educate medically underserved populations. Some trainings are designed for individuals who already have a health-related background; however, others are developed for those with no previous health promotion experience. It is unknown whether those with backgrounds in health promotion are more effective in this role than those without. This study assessed the relationship between health promotion experience among trained community health advisors (CHAs) and their self-efficacy to implement an evidence-based cancer control intervention, as well as cancer knowledge and screening behavior outcomes among intervention participants. Data were collected from 66 trained CHAs and 269 participants in CHA-led cancer awareness and early detection workshops. CHAs reported high self-efficacy to implement the intervention independent of their health promotion experience. CHA health promotion experience was neither indicative of differences in participant colorectal or breast cancer knowledge at 12 months, nor of changes in participant-reported cancer screening. However, participant prostate cancer knowledge at 12 months was greater when taught by CHAs with previous health promotion experience (P < 0.01). Prior health promotion experience of trained health advisors may not be pivotal across all contexts, but they may affect specific knowledge outcomes.

Evaluation of Stop the Bleed Training Among High School Personnel: A Qualitative Study.

Uncontrolled hemorrhage is the primary preventable cause of death following trauma. Stop the Bleed training exists to promote identification and basic treatment of life-threatening bleeding in the prehospital or community setting. Limited qualitative research is available on participant evaluation of hemorrhage control training for laypersons. To evaluate the experience and satisfaction with Stop the Bleed training among lay community members in an urban public school setting. Three group interviews were conducted with public high school personnel (faculty and staff) who received Stop the Bleed training. Personnel were asked to evaluate the training and provide suggestions for improvement. Responses were digitally recorded and transcribed verbatim. Content analysis for common themes was performed using NVivo. A total of eight participants were interviewed. Participants expressed satisfaction with hands-on training and dissatisfaction with crowded and rushed training conditions. Major themes included: (1) skill acquisition, retention, and decay, (2) training format and setting, and (3) use of simulation. Current Stop the Bleed training is considered satisfactory among public school educators. Suggestions for improvement include annual retraining programs and simulation-enhanced training opportunities.

A Community Mental Health and Wellbeing Literacy Study Among Australian Adults

This study aimed to investigate the mental health and wellbeing literacy of Australian adults by examining their ability to correctly discriminate mental health and wellbeing indicators. Mental health indicators were symptoms of Major Depression Disorder (MDD) and Generalized Anxiety Disorder (GAD) from the Diagnostic and Statistical Manual of Mental Disorders (DSM). Wellbeing indicators were derived from the European Social Survey (ESS) personal wellbeing module and reflect hedonic, eudaimonic and social wellbeing domains. A sample of 705 Australian adults aged &gt; 18 years (M = 50; SD = 15.9) were recruited to an online survey and assigned into one of two conditions in which indicators were either negatively (Ncondition1 = 359) or positively (Ncondition2 = 346) framed. In an initial discrimination task, participants were generally able to correctly identify indicators as reflecting mental health or wellbeing. While those in the positive condition reported slightly higher literacy, this was attributed to differences on only a couple of items. In a second discrimination task, participants were provided the additional option of classifying indicators as reflecting “both mental health and wellbeing” which, in both conditions, was how most participants generally classified both wellbeing and mental health indicators. Although many wellbeing and mental health researchers carefully discriminate between wellbeing and mental health, for lay community members, this distinction may be less important. These findings have implications for theoretical frameworks of mental health and wellbeing, may inform clinical practice, and can be used to improve the quality of educational campaigns targeting community mental health and wellbeing literacy.

"They Wait until the Disease Has Taking over You and the Doctors Cannot Do Anything about It": Qualitative Insights from Harambee! 2.0.

African immigrants make up a large subgroup of Black/African-Americans in the US. However, because African immigrant groups are typically categorized as “Black,” little is known about their preventative healthcare needs. Differences in culture, life and healthcare experiences between African immigrant populations and US-born people may influence preventive health care uptake. Thus, policymakers and healthcare providers lack information needed to make informed decisions around preventive care for African immigrants. This formative study was conducted among the largest East African immigrant communities in King County, WA. We recruited religious leaders, community leaders, health professionals, and lay community members to participate in thirty key informant interviews and five focus group discussions (n = 72 total), to better understand preventative healthcare attitudes in these communities. Through inductive coding and thematic analysis, we identified factors that impact preventative healthcare attitudes of the Somali, Ethiopian and Eritrean immigrant communities and deter them from accessing and utilizing healthcare. Cultural beliefs and attitudes around preventative healthcare, mistrust of westernized healthcare, religious beliefs/views, intersecting identities and shared immigrant experiences all influence how participants view preventative healthcare. Our results suggest that interventions that address these factors are needed to most effectively increase uptake of preventative healthcare in African immigrant communities.

Harambee! 2.0: The Impact of HIV-Related and Intersectional Stigmas on HIV Testing Behaviors Among African Immigrant Communities in Seattle, Washington.

African immigrants are disproportionately affected by HIV compared to U.S.-born individuals, and early HIV testing is the key challenge in ending the HIV epidemic in these communities. HIV-related stigma appears to be the most significant barrier to testing for HIV among African communities in King County, WA. In this formative study, we conducted thirty key informant interviews and five focus group discussions (n = total 72 participants) with Ethiopian, Somali, and Eritrean people living with HIV, health professionals, religious and other community leaders, and lay community members in King County to better understand HIV-related and intersectional stigmas’ impact on HIV testing behaviors. We used inductive coding and thematic analysis. Participants from all communities reported similar themes for HIV-related and intersectional stigmas’ influences on HIV testing behaviors. Misconceptions or poor messaging, e.g., regarding treatability of HIV, as well as normative or religious/moral beliefs around pre/extramarital sex contributed to HIV-related stigma. Intersecting identities such as immigrant status, race/ethnicity, and having a non-English language preference, all intermingle to further influence access to the U.S. healthcare system, including for HIV testing. These findings can be used to inform future research on community-led approaches to addressing early HIV testing amongst African immigrant communities.Supplementary InformationThe online version contains supplementary material available at 10.1007/s10461-021-03396-5.

Community-Based Interventions for the Treatment and Management of Conflict-Related Trauma in Low-Middle Income, Conflict-Affected Countries: a Realist Review

Where low- and middle-income countries have limited economic resources to provide individualized mental health services to people exposed to conflict, community-based interventions may be more appropriate. We aimed to evaluate community level interventions for improving mental health outcomes in Low- and Middle-income countries (LMIC). A realist review of community-based interventions (CBIs) to improve mental health for people in LMIC following conflict. Five databases (Cochrane, PubMed, PsychINFO, Medline, and CINAHL) and a manual search of individual papers. We found 1318 articles, of which 29 were selected. Out of the 29 primary articles, 19 showed successful results, 4 showed mixed results, 1 showed inconclusive results, and 1 showed unsuccessful results. After analyzing the results, we found 3 mechanisms that may influence the effectiveness of these CBIs: the use of lay community members as intervention deliverers, the application of transdiagnostic approaches, and customized outcome assessment tools. Community-based approaches to improve mental health in LMICs are rare and evidence for their effectiveness is limited. Interventions that have a wide scope, train lay mental health workers, and use contextually adapted outcome assessment tools show promise.

Policy Challenges Facing the Scale Up of Integrated Community Case Management (iCCM) in Uganda.

Integrated Community Case Management (iCCM) of malaria, pneumonia and diarrhoea is an equity focused strategy, to increase access to care for febrile illness in children under-5 years of age, in rural communities. Lay community members are trained to diagnose and treat malaria, pneumonia and diarrhoea in children, and to identify and refer very ill children. Today, many low-income countries including Uganda, have a policy for iCCM which is being rolled out through public sector community health workers (CHWs). Ten years after the introduction of the iCCM strategy in Uganda, it is important to take stock and understand the barriers and facilitators affecting implementation of the iCCM policy. We conducted an iCCM policy analysis in order to identify the challenges, enablers and priorities for scale-up of the iCCM strategy in Uganda. This was a qualitative case study research which included a document review (n=52) and key informant interviews (n=15) with Ugandan stakeholders. Interviews were conducted in 2017 and the desk review included literature up to 2019. This paper highlights the iCCM policy trajectory since 2010 in Uganda and includes a policy timeline. The iCCM policy process was mainly led by international agencies from inception, with little ownership of the government. Many implementation challenges including low government funding, weak coordination and contradicting policies were identified, which could contribute to the slow scale up of the iCCM program. Despite the challenges, many enablers and opportunities also exist within the health system, which should be further harnessed to scale up iCCM in Uganda. These enabling factors include strong community commitment, existing policy instruments and the potential of utilizing also the private sector for iCCM implementation. The iCCM program in Uganda needs to be strengthen through increased domestic funding, strong coordination and a focus on monitoring, evaluation and operational research.

A Community-led Workshop to Convey the Concept of “Community-centered Model of Health Promotion:” An Experience from Sri Lanka

Background and Aim: This paper details the results of a formal workshop conducted by lay community members for a professional audience, as part of an initiative by the Department of Health Promotion in Rajarata University to popularize its “community centered model of health promotion”. Methods: Ten persons from rural communities in Anuradhapura district, who had previously implemented health promotion interventions in their communities, conducted the workshop. The half-day workshop, was in 3 phases – phase I: Prioritizing issues and setting goals; phase II: Training participants on the steps of the community centered model; phase III: A discussion with participants on enhancing the effectiveness of interventions. The participants were 10 local and foreign professionals and 17 undergraduates. A self-administered questionnaire was administered to the participants and telephone interviews were conducted with community members who conducted the workshop. Results: The majority of participants reported a strong achievement of learning outcomes. Participants’ comments indicated that the model was well presented and the community member trainers conducted the workshop well. Responses from the community member trainers indicated that they felt confident in conducting the workshop and believed they had succeeded in imparting the intended knowledge and experience. Conclusions: The community-led workshop was successful in terms of conveying the model, achieving the leaning outcomes of participants and in empowering community members to conduct a formal workshop for professionals. It is recommended that this model be replicated.

Views and Perceptions toward Mental Illness: A Qualitative Study from a Rural, Agricultural Community in Anuradhapura, Sri Lanka

Community’s perception toward mental illness is a major determinant of stigma and discrimination toward mental illness, ignorance, delayed help-seeking attitude, and treatment options. Conceptions of mental illness are often influenced by sociocultural structures and health literacy among communities. Despite the increased burden of mental health problems, little is known about knowledge and perception of the public toward mental illness in rural communities in Sri Lanka. A community-based qualitative study was conducted in a rural, agricultural community in the district of Anuradhapura, in North-Central province of Sri Lanka to explore perception and attitudes toward mental illness. Eight individual, in-depth, semi-structured interviews and one group interview were conducted among a convenient sample of 15 lay community members. The data were analyzed using qualitative content analysis method. Participants described their views and perceptions toward conceptualizing mental illness under four themes, namely, causes of mental illness, complementary treatment methods, stigma and social discrimination, and supporting factors for mental well-being. Poverty, bad relationships, and beliefs influenced by sociocultural and religious background were considered as the main causes of mental illness. Misconceptions, stigma, and discrimination of mentally ill people and their families delayed help-seeking behavior and caused barriers to mental health-care provision. There is a strong need for increasing mental health literacy and awareness among people in rural communities. People’s sociocultural and religious beliefs should take into account when caring for mentally ill people and their family members.

Task-shifting for refugee mental health and psychosocial support: A scoping review of services in humanitarian settings through the lens of RE-AIM.

Decades of war, famines, natural disasters, and political upheaval have led to the largest number of displaced persons in human history. The refugee experience is fraught with obstacles from preflight to resettlement, leading to high rates of mental distress including post-traumatic stress disorder, depression, and anxiety. However, there is a paucity of mental health services for refugees in transit. To meet the needs of this vulnerable population, researchers are experimenting with teaching lay community members basic tools for the delivery of mental health and psychosocial support services (MHPSS). However, there are research gaps about the use of implementation science to inform the delivery of applicable interventions, especially within low resource settings, and even less in the humanitarian context. This review utilizes an implementation science framework (RE-AIM) to assess the reach, effectiveness, adoption, implementation, and maintenance of these interventions. Studies included varying interventions and modes of delivery within refugee camp and urban settings. A comprehensive search strategy led to the inclusion and analysis of 11 unique studies. While current research documents adaptation strategies, feasibility, and fidelity checks through routine monitoring, there is still a dearth of evidence regarding capacity building of lay providers in humanitarian settings. Barriers to this data collection include a lack of homogeneity in outcomes across studies, and a lack of comprehensive adaptation strategies which account for culture norms in the implementation of interventions. Furthermore, current funding prioritizes short-term solutions for individuals who meet criteria for mental illnesses and therefore leaves gaps in sustainability, and more inclusive programming for psychosocial services for individuals who do not meet threshold criteria. Findings contribute to the literature about task-shifting for MHPSS in humanitarian contexts, especially illuminating gaps in knowledge about the lay counselor experiences of these interventions. There is a growing number of refugees forced to make homes in temporary camps or urban centers as they await resettlement, a process that can last decades. These refugees are at risk of serious mental health outcomes due to ongoing stress and trauma. One strategy commonly used in global mental health is the training of lay providers to deliver basic mental health and psychosocial programming to communities. While this tactic is currently being tested in refugee settings, there is limited evidence about the implementation of this strategy. The following scoping review aims to assess the implementation of task-shifting interventions within refugee settings, through the use of a robust implementation science framework.

The exchange and use of cultural and social capital among community health workers in the United States.

Community health care workers (CHWs), lay community members with basic health care training, have been charged with providing appropriate care for vulnerable populations, addressing social determinants and improving population health. Frequently, CHWs lack the economic or cultural capital to accomplish these goals. Through analysis of 17 semi-structured interviews with CHWs and supervisors at a CHW programme in the United States, we draw on Bourdieu's theory of practice to examine how the exchange of cultural and social capital impact CHW effectiveness. We found that CHWs' reliance on bonding capital was perceived to effectively build social networks and mutual trust among marginalised communities. But, over-reliance on embodied cultural capital and bonding capital reduced integration into the health care field; limited access to bridging capital; and limited social standing. We highlight how the exchange of cultural to bonding and bridging capital presented structural limitations. Overall, the demonstrated tension demarcates and reinforces longstanding divisions between social issues and health care issues. Future efforts should focus on promoting the unique skills of CHWs within health care settings to avoid compromising CHWs' ability to advance population health.

Perceptions of care and rehabilitation for children living with HIV in KwaZulu-Natal province, South Africa

ABSTRACT Rehabilitation offered to children living with HIV (CLHIV) experiencing disabilities can address participation restrictions and improve their quality of life and day-to-day community and school engagement. This study aimed to explore the perceptions and insights of healthcare professionals and other key stakeholders, such as community care workers, educators and social workers on the care offered to CLHIV experiencing disabilities in a semi-rural context in South Africa in order to inform and improve the rehabilitation framework. Focus group discussions and semi-structured interviews were used to gather information on the experiences of 15 purposively selected participants involved in the rehabilitative care of CLHIV. Three major themes emerged from the data: perceptions of HIV-related disability, current barriers to care and the proposed shift in care. Participants understood the biopsychosocial viewpoint of disability experienced by CLHIV. Barriers to care of the children included stigma and denial of HIV infection by carers, as well as poor multi-disciplinary team functioning. Participants reported that the ongoing education of healthcare workers, educators and carers as well as a task-shifting approach to care, training lay community members to conduct basic disability screening and referral could improve rehabilitative care for CLHIV.

Culturally and developmentally adapting group interpersonal therapy for adolescents with depression in rural Nepal

BackgroundEvidence-based interventions are needed to reduce depression among adolescents in low- and middle-income countries (LMICs). One approach could be cultural adaptation of psychological therapies developed in high-income countries. We aimed to adapt the World Health Organization’s Group Interpersonal Therapy (IPT) Manual for adolescents with depression in rural Nepal.MethodsWe used a participatory, multi-stage adaptation process involving: translation and clinical review of the WHO Manual; desk reviews of adaptations of IPT in LMICs, and literature on child and adolescent mental health interventions and interpersonal problems in Nepal; a qualitative study to understand experiences of adolescent depression and preferences for a community-based psychological intervention including 25 interviews with adolescent boys and girls aged 13–18 with depression, four focus group discussions with adolescents, four with parents/caregivers and two with teachers, six interviews with community health workers and one with a representative from a local non-governmental organisation (total of 126 participants); training of IPT trainers and facilitators and practice IPT groups; and consultation with a youth mental health advisory board. We used the Ecological Validity Framework to guide the adaptation process.ResultsWe made adaptations to optimise treatment delivery and emphasise developmental and cultural aspects of depression. Key adaptations were: integrating therapy into secondary schools for delivery by school nurses and lay community members; adding components to promote parental engagement including a pre-group session with the adolescent and parent to mobilise parental support; using locally acceptable terms for mental illness such as udas-chinta (sadness and worry) and man ko samasya (heart-mind problem); framing the intervention as a training programme to de-stigmatise treatment; and including activities to strengthen relationships between group members. We did not adapt the therapeutic goals of IPT and conserved IPT-specific strategies and techniques, making edits only to the way these were described in the Manual.ConclusionsGroup IPT can be adapted for adolescents in Nepal and delivered through the education system. A randomised controlled trial is needed to assess the impact and costs of the intervention in this setting. Future research in LMICs to adapt IPT for adolescents could use this adapted intervention as a starting point.

Nurture Early for Optimal Nutrition (NEON) programme: qualitative study of drivers of infant feeding and care practices in a British-Bangladeshi population.

ObjectivesTo explore optimal infant feeding and care practices and their drivers within the British-Bangladeshi population of East London, UK, as an exemplar to inform development of a tailored, coadapted participatory community intervention.DesignQualitative community-based participatory research.SettingCommunity and children’s centres and National Health Service settings within Tower Hamlets, London, UK.Participants141 participants completed the community study including: British-Bangladeshi mothers, fathers, grandmothers and grandfathers of infants and young children aged 6–23 months, key informants and lay community members from the British-Bangladeshi population of Tower Hamlets, and health professionals working in Tower Hamlets.Results141 participants from all settings and generations identified several infant feeding and care practices and wider socioecological factors that could be targeted to optimise nutritional outcomes. Our modifiable infant feeding and care practices were highlighted: untimely introduction of semi and solid foods, overfeeding, prolonged parent-led feeding and feeding to ‘fill the belly’. Wider socioecological determinants were highlighted, categorised here as: (1) society and culture (e.g. equating ‘chubby baby’ to healthy baby), (2) physical and local environment (e.g. fast food outlets, advertising) and (3) information and awareness (e.g. communication with healthcare professionals around cultural norms).ConclusionsParenting interventions should be codeveloped with communities and tailored to recognise and take account of social and cultural norms and influence from different generations that inform infant feeding and care practices and may be of particular importance for infants from ethnically diverse communities. In addition, UK infant feeding environment requires better regulation of marketing of foods for infants and young children if it is to optimise nutrition in the early years.

Abstract A035: Let's talk research: Community ambassadors engaging African Americans

Abstract The role of research has been instrumental in extending cancer survivorship and improving overall cancer care. Despite these advances, African Americans continue to suffer disproportionately from cancer. Research shows that the majority of people with cancer are unaware that clinical trials are an option; given the opportunity, most stated that they would enroll. Fox Chase Cancer Center is committed to improving health care outcomes for the communities it serves by expanding education and outreach efforts focused on cancer prevention, screening, early detection, treatment, and survivorship. Using a community-based intervention, we designed a Community Ambassador Training (CAT) program to develop a cohort of lay community members to engage primarily African American communities in conversations regarding the importance of research participation. We also evaluated the efficacy of the CAT in increasing participants' knowledge regarding clinical trials and biospecimen research and their ability to accurately, disseminate this knowledge. Working through community partners and building on prior research efforts, Community Health Educators (CHE) funded by NCI's Center to Reduce Cancer Health Disparities trained three cohorts of African Americans to become community ambassadors. Thirty-five individuals participated and 19 completed the full training. The seven-week program included didactic teaching that addressed the role of research, the research process, past abuses, and existing laws and regulations. The program also included interactive exercises that empowered participants to feel comfortable sharing information with other community members. Results from the study show that following completion of the program, there was a notable increase in participants' knowledge and comfort with discussing cancer research with others. During our session, we will share our approach, methods, activities, lessons learned, challenges, and next steps. Citation Format: Armenta Washington, Evelyn T. Gonzalez, Rosa Ortiz. Let's talk research: Community ambassadors engaging African Americans [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A035.