Community-based Participatory Research Methods Research Articles

Eliciting Willingness and Beliefs towards Participation in Genetic Psychiatric Testing in Black/African American Mothers at Risk for Depression.

Black/African American women are at high risk for depression, yet are underrepresented in psychiatric genetic research for depression prevention and treatment. Little is known about the factors that influence participation in genetic testing for Black/African American women at risk. The purpose of this study was to elicit the beliefs that underlie participation in genetic testing for depression in Black/African American mothers, a subgroup at high risk. Willingness to participate in genetic testing procedures was also determined. A qualitative, descriptive design was employed. Exactly 19 mothers aged 21–42 completed open-ended questionnaires. Directed content and descriptive analyses of the text were conducted based on the Theory of Planned Behavior. Salient beliefs included: behavioral advantages—diagnosing/detecting depression (31.6%), finding cure/treatment (21.1%); disadvantages—not finding follow-up treatment/help (21.1%); salient referents, who approves—family members (47.4%), agencies/organizations (26.3%); who disapproves—church associates (21.1%). Control beliefs included: barriers—unpleasant/difficult testing procedures (42.1%), limited knowledge about the purpose of testing (26.3%); facilitator—a convenient location (21.1%). Most mothers (89.5%) indicated willingness to participate in testing. Interventions can target families, address barriers, emphasize future benefits, and use convenient locations and community-based participatory research methods. Policies can address social determinants of participation to increase inclusion of these mothers in psychiatric genetic research.

Inequitable mobilities: intersections of diversity with urban infrastructure influence mobility, health and wellbeing

ABSTRACT Transport infrastructure critically influences how people live their lives, structuring mobility and mediating access to the resources central to health and wellbeing. While the links between infrastructure, mobility and wellbeing are well established, much less is known about how these relationships are contingent on socio-economic, cultural, and bodily diversity, and the characteristics of local ecologies. Here, we firstly ask, how does transport infrastructure shape mobility opportunities for people living in diverse circumstances? Secondly, what are the impacts of inequitable access to mobility for wellbeing? Drawing from research across four sites in Tāmaki Makaurau (Auckland), Aotearoa New Zealand, we consider the experiences of older- and disabled- or bodily-diverse people from varied ethnic groups living across a range of socio-economic circumstances. We use community-based participatory research methods, including ‘go-along’ interviews, focus groups and interactive workshops, to engage communities least heard at policy or strategic levels. Their experiences illustrate firstly, that urban infrastructure tends to further marginalise the already marginalised, and secondly, that people draw on different and unequal resources to negotiate infrastructural marginalisation, resulting in unequally patterned vulnerabilities and a system that entrenches the status quo. Our findings indicate the need to consider intersectionality in transport consultation and design.

Community Gardening as a Way to Build Cross-Cultural Community Resilience in Intersectionally Diverse Gardeners: Community-Based Participatory Research and Campus-Community-Partnered Proposal.

BackgroundCommunity-based agriculture has been found to decrease food insecurity and alleviate health inequities. Furthermore, it provides a sense of ownership, resources to help integrate new communities, and a space to nurture existing cultural identities for intersectionally diverse gardeners. This sense of belonging in connection with access to growing plots has been linked to psychological well-being and resilience. However, little is known about how the psychosocial benefits of plot ownership affect resilience and which aspects of this resilience are salient.ObjectiveThis community-based participatory research (CBPR) project will examine the role of community gardens in decreasing food insecurity and facilitating various forms of resilience in food-insecure groups in Rochester, Minnesota. Since participation in community gardens nurtures various forms of resilience along individual, group, and community dimensions, our research seeks to understand how dimensions of resilience vary along intersectional lines. In addition to mapping the psychosocial benefits linked to plot ownership, we find that examining which forms of resilience are fostered in community-based agricultural projects addresses an important gap in the academic literature. This can help us propose policy-level practices that reduce health inequities connected to food and nutrition at the local level.MethodsUsing a mixed methods approach, this ongoing community-campus partnership will examine the experiences of current and new plot owners. As a CBPR project, our data collection plan, from design to dissemination, incorporates the intellectual and creative labor of the individuals representing members of the campus community (ie, college students and faculty members engaged in other citizen science projects hosted by the garden), community growers, individuals involved in the community garden’s board, and representatives of various organizational bodies. Data collection activities will consist of surveys, in-depth interviews, and photovoice.ResultsThis project was funded in January 2020 and approved by the University of Minnesota's Institutional Review Board in March 2020. For the 2020 growing season, we will conduct evaluative interviews about the effect of COVID-19 on community gardeners, including their experiences during this growing season. For the 2021 growing season, data collection, via pre- and postsurveys, is projected to begin in March 2021 and end in November 2021. We will also conduct in-depth interviews from January to April 2021. Data analysis will commence in April 2021. Photovoice activities (ie, data collection, analysis, synthesis, and dissemination) are expected to take place during the spring and summer of 2021.ConclusionsFindings emerging from this study will provide the preliminary data to foreground community gardening projects and initiatives to improve physical and mental health outcomes in food-insecure communities. Also, the data collected will highlight the role of CBPR methods in disseminating information about the organizational practices of the community garden; this will assist others in planning and implementing similar projects.International Registered Report Identifier (IRRID)PRR1-10.2196/21218

Using Photovoice to Understand Perspectives on Safe Infant Sleep Practices among Caregivers Enrolled in Perinatal Home Visiting

Sudden and unexpected infant death (SUID), often associated with unsafe infant sleep practices, remains a leading cause of infant mortality in the United States. Maternal, Infant, and Early Childhood Home Visiting (MIECHV) programs provide evidence-based individualized education, support, and resources to promote infant and child health, including promotion of safe infant sleep guidelines. The purpose of this qualitative evaluation was to explore barriers, facilitators, and home visitor influences on infant sleep practices; this component elicited caregivers’ perspectives using Photovoice methodology. Photovoice is a community-based participatory research method which aims to bring forward participants’ perspectives and everyday experiences through visual means. Five MIECHV participants submitted 21 pictures that were discussed in individual interviews. The main facilitators were access to appropriate furnishing, knowledge about safe sleep practices, and effective bedtime routines. Barriers included housing-related issues, other caregivers’ practices, and caring for siblings. These results highlighted the importance of the practitioner-client relationship and inform the program on factors that affect parents’ decision-making and infant sleep practices.

Creating an appropriate adaptation of a healthy lifestyle intervention for people after stroke

ABSTRACT Primary Objective To describe (1) an evidence-based approach to promoting a healthy lifestyle, the Diabetes Prevention Program Group Lifestyle Balance intervention, and (2) our work with input from an Advisory Board of stakeholders to modify the program to meet the unique needs of people post stroke. Research Design Community-Based Participatory Research Methods and Procedures An Advisory Board of stakeholders was convened to modify the Group Lifestyle Balance intervention to meet the unique needs of people post stroke. Main Outcomes and Results The primary adaptations that emerged from the Advisory Board included (1) curriculum emphasis on heart health after stroke, (2) care partner participation, (3) physical activity, dietary, and weight loss modifications specific to people after stroke, and (4) general programmatic recommendations (e.g., wider age range of participants; eligibility based on time since stroke; alternative modes of delivery). Conclusions Feedback from the diverse group of stakeholders provides the basis for modifying an evidence-based healthy lifestyle intervention to meet the unique needs of people after stroke. Future research efforts should examine the efficacy and effectiveness of the adapted program to prevent weight gain after stroke and reduce the risk of chronic conditions including diabetes, metabolic syndrome, and heart disease.

Community-Based Participatory Research: How Residents of a Small Low-Income Racially Homogenous Disadvantaged Neighborhood Perceive the Effects of Poverty Stigma, Community Disorder, & Feelings of Unsafety on Health

Although research indicates that social determinants impact minority health, there remains a dearth of knowledge on how economically disadvantaged communities perceive the effects of poverty stigmatization, community disorder, and feelings of unsafety on their health status. This qualitative study used community-based participatory research methods to explore how minority residents (n=23) from an urban neighborhood of concentrated poverty perceived the impact of residential and environmental factors on their health. Thematic analysis highlighted how the combination of high crime rates and community disorder negatively affected residents’ ability to maintain a healthy lifestyle due to increased levels of stress and decreased access to health resources. Additionally, perceptions of stigmatization and feelings of unsafety adversely impacted levels of community connectedness and collective efficacy and prevented efforts to improve their individual and neighborhood health conditions.

Resident-Led Neighborhood Development to Support Health: Identifying Strategies Using CBPR.

Evidence suggests that where people live, learn, work, and play affects a range of health outcomes for children and adults. Differential access to social, economic, and environmental supports puts some community members at greater risk, leading to disparities in health and well-being. The 2014 release of the For the Sake of All report highlighted persistent health disparities for African Americans in St. Louis, Missouri, and their social and economic impacts on the St. Louis region. This study extends this work by developing partnerships with community organizations and neighborhood residents to address health disparities. Community-based participatory research (CBPR) methods were utilized to engage partners in a 10-month research process to address community concerns that impact health. Seven community residents, neighborhood researchers, engaged in workshops to learn about the research process and used techniques to gather information to implement action strategies. Neighborhood researchers selected 14 vacant lots to implement their action plan, which included visions for repurposing the land into a community park, produced a report for dissemination, and organized a community action forum to communicate their findings. This study highlights a promising approach to promote healthy communities and health equity by empowering neighborhood residents using participatory methodologies.

Envisioning the Rural Practicum

Recruitment and retention of teachers in rural areas continue to dominate educational narratives across the country. School districts, state agencies, and university schools of education have instituted strategies including financial incentives, alternative standards and licensure criteria, and grow-your-own programs that target underemployed locals and paraprofessionals for accelerated licensure. While each strategy may enjoy situational success, none is a panacea for all circumstances. However, there is growing interest in the development of university and school district partnerships in creating innovative solutions to rural recruitment and retention issues. This study investigates the efficacy of a partnership between several small rural districts and a state university partnering to create and test a contextualized clinical practice model. The Montana State University rural practicum placed 13 preservice teachers in a week-long, immersive clinical practice in rural, remote schools in Montana, for them to authentically experience the rural context and for researchers to determine if such an experience might positively affect recruitment and retention efforts. The study used a community-based participatory research method to ensure equal participation of both university and rural school partners in co-creating the experience and in collecting and analyzing data. Results suggest that the rural practicum experience positively affected preservice teacher perceptions of rural teaching and rural communities. Rural school leaders and university personnel also agreed that the model held promise for recruiting and retaining teachers in rural areas.

Engaging African American Parents to Develop a Mobile Health Technology for Breastfeeding: KULEA-NET.

African Americans breastfeed less than other groups, which has implications for health throughout the life course. Little is known about mobile health technologies to support breastfeeding. This study proceeded in two phases. The aim of Phase 1 was to identify ideal technological components and content of a mobile health intervention. The aim of Phase 2 was to determine the usability of a prototype, KULEA-NET, based on the Phase 1 findings. For this mixed-methods study, we used community-based participatory research methods and user-centered technology design methods. We used open coding in NVivo 11 to organize data from focus groups and in-depth interviews, then we analyzed the data. We then developed a prototype and tested the prototype's usability with the System Usability Scale. Fifty pregnant and postpartum African Americans from the District of Columbia participated. Participants preferred an app with text messaging technology and identified areas for intervention: self-efficacy, parent-child attachment beliefs, social support, public breastfeeding and social desirability, and returning to work. Desired features included local resources, support person access, baby care logs, identification of public breastfeeding venues, and peer discussions. The System Usability Scale score was 73.8, which indicates above average usability. A mobile health technology like KULEA-NET can be used to meet the breastfeeding needs of African Americans, build social desirability, and complement traditional health care. The appeal of an African American-specific intervention is unclear. Responding to mixed feeding practices is challenging. KULEA-NET is a mobile breastfeeding intervention guided by the preferences of African American parents and offers promising usability metrics.

2228-PUB: Utilizing a Diverse Stakeholder Group to Build a Patient-Centered Type 1 Diabetes Research Agenda

Engaging patient’s in the research process is essential as it creates self-awareness, increases a collective understanding of needs and views, and allows for active participation in healthcare decisions. This stakeholder driven project aimed to develop a patient-centered research model to identify stakeholders of type 1 diabetes (T1D) for addressing the needs of patients and families in rural communities. From project inception, investigators used an innovative approach of incorporating stakeholders in the entire research process. A four-step engagement plan using the Methods in Community-Based Participatory Research for Health guided the project. In the first strategy, assessment of both personal and institutional capacities for active collaboration was completed. Specifically, the project lead (researcher, healthcare provider, and mother of a child with type 1 diabetes), caregiver, and advocacy organization executive met to discuss strengths and weaknesses and how to effectively collaborate. Next, identification of potential partners ensued with new and established networks, associations, and community leaders. We completed this step through years of networking and becoming involved within the community. Reframing the ultimate health issue for research was the third strategy. This was a dynamic, interactive process guided by a diverse group of stakeholder perspectives across two states in the development of a patient-centered research plan. Finally, developing and nurturing the sustained partnerships established between researchers and community partners was accomplished in strategy four. Specifically, the team developed a group process contract that allowed for fluctuation to meet individual and group needs. These relationships were built through sustained T1D community presence and networking. This shared decision-making process resulted in trust, accountability, and stakeholder empowerment while ensuring that individual’s voices were heard. Disclosure V.D. Jewell: None. A.A. Abbott: None. Funding Patient-Centered Outcomes Research Institute (10443-CU)

Abstract C111: Biologic and self-reported stress levels among Latina breast cancer survivors: The Nuevo Amanecer Rural Trial

Abstract Among Latinas, breast cancer is the primary cause of cancer-associated mortality. Latinas experience breast cancer health disparities in disease-free survival, health-related quality of life, pain, fatigue, and anxiety, which may be a result of experiences of chronic stress. Chronic stress can impact the hypothalamic pituitary adrenal (HPA) axis, leading to changes in the tumor microenvironment and subsequently facilitate cancer progression. Little is known about the role of stress in cancer health disparities among Latinas. Our aim was to assess the feasibility of biospecimen collection and describe biologic and self-reported levels of stress using baseline data from a randomized controlled trial of a stress-management intervention among Spanish-speaking rural Latina breast cancer survivors (LBCS). We used community-based participatory research (CBPR) methods to recruit women, conduct interviews, and obtain saliva and hair samples. Recruiters were bilingual-bicultural women from local communities working in the community organizations that were research partners. Videos and print materials with graphics were developed in low-literacy Spanish to demonstrate biospecimen collection procedures. Recruiters provided instruction and demonstrations on sample collection and collected self-reported stress and depressive symptoms via in-person interviews in Spanish. Self-reported measures of stress and depressive symptoms consisted of the Perceived Stress Scale (PSS-10) and Personal Health Questionnaire (PHQ-8). Biologic stress was measured using hair (1 sample) and salivary cortisol (3 samples/day for 3 days). Mean hair cortisol concentration (HCC) in pc/mg units was used to assess chronic stress. The cortisol awakening response (CAR) measure assessed the activity of the HPA axis; curves that demonstrate a cortisol peak 30 minutes after awakening and a cortisol dip bedtime were considered normal. We recruited 103 participants from the Central Valley and Imperial County, California. Eighty-six percent provided saliva samples for CAR analysis, and 53% provided hair samples for HCC. Participants' mean age was 56 years (SD=10.6) and mean time since breast cancer diagnosis was 3.2 years (SD=3.2). Participants reported moderate (PSS mean score = 14.5; SD 7.5) stress levels and mild depression (PHQ-8 mean score = 6.3; SD 5.5). Biologic stress measurements demonstrated that 37% of participants had an abnormal CAR at baseline, and elevated HCC (mean HCC = 362.9 pg/mg). Bivariate models showed no relationship between self-reported and biologic markers of stress. Using CBPR methods leads to successful recruitment of Latinas to clinical research involving biospecimen collection. Although self-reported stress and depression were moderate or mild, biologic stress levels were high and abnormal in over 1/3 of participants, suggesting that chronic stress, and its subsequent integration into the biologic stress pathways, may help explain ethnic disparities in cancer outcomes of LBCS. Citation Format: Cathy Samayoa, Jasmine Santoyo-Olsson, Leticia Márquez-Magaña, Anna M. Nápoles. Biologic and self-reported stress levels among Latina breast cancer survivors: The Nuevo Amanecer Rural Trial [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 C111.

A Community Partnered Approach for Defining Child and Youth Thriving.

To develop a community-informed definition of child and youth thriving and identify community priorities for child/youth thriving. Through concept mapping, a mixed-methods community-based participatory research method, this study examined community and health professionals' conceptualizations of child and youth thriving. We conducted brainstorming, sorting and rating, and interpretation sessions in 3 geographically distinct neighborhoods with concentrated disadvantage; simultaneously, researchers and health professionals participated in online sessions. Participants included 91 community members, health care and social service professionals, and researchers who identified 104 items related to child and youth thriving and grouped these items into 7 distinct clusters. Two clusters focused on child-level factors (Strong Minds and Bodies; Positive Identity and Self-Worth), 2 focused on place-based factors (Healthy Environments; Vibrant Communities), and 3 focused on relationships and interactions between children and their environments (Caring Families and Relationships; Safety; and Fun and Happiness). The community-informed conceptualization of child thriving builds on previous models, adding dimensions of physical health and safety. Participants ranked having "someone to talk to," being "comfortable in their own skin," having "pride in themselves," and having a "strong sense of self and self-worth" as most important to child and youth thriving. By integrating perspectives of community members from diverse neighborhoods with those of researchers and health professionals, this study captures novel domains to inform a conceptual model of thriving that focuses on stakeholder priorities. Findings will guide development, implementation, and evaluation of community-based interventions and their impact on child and adolescent health and thriving.

Evaluation of metal aerosols in four communities adjacent to metal recyclers in Houston, Texas, USA

ABSTRACT The metal recycling industry provides jobs, generates revenue in local communities and conserves energy and resources. Nonetheless, possible negative impacts of metal recyclers (MRs) include the potential for emissions of metal aerosols and other dusts, noise, traffic and fire during operations. In Houston, Texas, there were more than 180 resident complaints about air quality related to MRs from 2006 to 2011 that were reported to the city’s 311 call system. As a part of a community-based participatory research study, Metal Air Pollution Partnership Solutions (MAPPS), we evaluated the impact of metal emissions from MRs on air quality over two years in four environmental justice communities. We simultaneously collected samples of inhalable particles (aerodynamic particle size less than 10 µm, PM10) using a sampling strategy to capture emissions from the MRs while they were in operation at four locations within each community: an upwind location, the fence line of MR and two downwind locations and analyzed the samples for 10 metals. The highest values of iron (Fe), manganese (Mn), nickel (Ni), lead (Pb), arsenic (As) and chromium (Cr) were detected at the fence lines of MRs. The normalized ratios of these metals at near and far neighborhood locations were 0.01 to 0.64 and 0.01 to 0.34, respectively, as compared with the metals at the fence line. The concentrations of metals rapidly decreased by 57–70% within 100 meters and reached similar levels at upwind (background) locations at approximately 600 meters. After adjusting the measured data for wind direction, rain and operating hours, we calculated non-carcinogenic hazard index values and carcinogenic risks for adult residents from breathing metals emitted from the facilities. Estimated inhalation cancer risks ranged from 0.12 case to 24 cases in 1 million people and the hazard index values ranged from 0.04 to 11. Implications: In Houston, Texas, residents complained about air quality related to metal recyclers from 2006 to 2011. Using a community-based participatory research method, metal emissions were characterized at four environmental justice communities. The results indicate that metal concentrations were the highest at the fence line and decreased by 57–70% within 100 meters and reached similar levels of background at 600 meters. After adjusting the measured data for meteorological parameters and operating hours, estimated inhalation cancer risks ranged from 0.12 cases to 24 cases in 1 million people and hazard index values ranged from 0.04 to 11.

Integration of Mixed Methods in Community-Based Participatory Research: Development of a Disease Prevention Intervention for Ultra-Orthodox Jewish Women.

To describe the development of the first disease prevention intervention with ultra-Orthodox Jewish (UOJ) women in Israel using mixed methods and community-based participatory research (CBPR). This collaborative, 7-staged development process used an exploratory sequential mixed methods design integrated into a community-based participatory approach. The UOJ community in Israel, a high-risk, low socioeconomic, culturally insular minority that practices strict adherence to religious standards, maintains determined seclusion from mainstream culture and preserves traditional practices including extreme modesty and separation between the sexes. Women from a targeted UOJ community in Israel with distinct geographic, religious, and cultural parameters. These included 5 key informant interviewees, 5 focus groups with 6 to 8 participants in each, a cluster randomized sample of 239 questionnaire respondents (an 87% response rate), and 11 steering committee participants. Qualitative data were analyzed through Interpretative Phenomenological Analysis by 2 researchers. Quantitative data were collected via questionnaire (designed based on qualitative findings) and analyzed utilizing descriptive statistics. Barriers to health behavior engagement and intervention preferences were identified. The final intervention included walking programs, health newsletters, community leader trainings, teacher and student trainings, and health integration into schools. Utilizing mixed methods in CBPR improved cultural tailoring, potentially serving as a model for intervention design in other difficult to access, low socioeconomic, and culturally insular populations.

Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community.

Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians.Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age ≥65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2.Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients.Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.

Use of photovoice to explore the potential role of youth in contributing to maternal health in rural Wakiso district, Uganda

Despite youth constituting a large portion of the population in Uganda, their involvement in improving maternal health in their communities has been minimal. This paper explores the potential role of youth in contributing to maternal health in rural communities in Wakiso district, Uganda using photovoice. Photovoice was used as a community-based participatory research method among 10 youth (5 males and 5 females) over a period of 5 months. The photos taken by the youth were discussed in monthly meetings, and emerging data was analysed using thematic content analysis. Four themes emerged regarding how youth can contribute to improving maternal health in their communities. These themes were: community health education; advocacy for health improvement; community voluntary work; and being exemplary. The fifth and final theme provides the avenues, including drama and sports, that the youth suggested they could use for conveying messages to the community concerning maternal and general health. Health education on topics such as the importance of delivering at health facilities was emphasised. Regarding advocacy, the youth said they can be involved in reaching out to various stakeholders to raise concerns affecting maternal health. Voluntary work such as construction of energy stoves for pregnant women emerged. The youth also highlighted that they could be exemplary for instance by males accompanying their spouses during antenatal visits. With the need to continuously engage community actors in health initiatives, youth should be considered and supported as important stakeholders so they may engage in activities to improve health within their communities.

House Ball Community Leaders' Perceptions of HIV and HIV Vaccine Research.

Background or Objectives:Worldwide, men who have sex with men (MSM) and Transgender persons are vulnerable to psychosocial factors associated with high risk for HIV, and suffer disproportionately high rates of HIV/AIDS. In the United States (US), the House Ball Community (HBC) is a social network comprised predominantly of Black and Hispanic MSM and Transgender persons who reside in communal settings. This study explores Western New York HBC leaders’ perceptions of HIV in their communities and their knowledge of HIV prevention strategies, including HIV vaccine trials.Methods:The project was conducted using an exploratory approach based on the principles of Community-Based Participatory Research (CBPR) methods. An HIV behavioral risk assessment provided descriptive data, while qualitative measures explored psychosocial and behavioral factors.Results:Behavioral assessments indicated high levels of risky sexual behaviors and experiences of violence. Interviews with 14 HBC leaders revealed that knowledge of HIV and local HIV vaccines trials was limited. Barriers to HIV knowledge included fear of peer judgment, having inaccurate information, and lack of formal education. Experiencing violence was identified as barrier to positive health behavior. Nevertheless, the HBC was described as a safe and creative space for marginalized MSM and Transgender youth.Conclusion and Global Health Implications:Findings suggest that the interrelation between health problems and social context amplify HIV risk in the HBC. The organizational structure and resources of the HBC, and MSM/Transgender communities worldwide can be instrumental in informing interventions to address HIV-related risk behaviors and create appropriate recruitment tools to ensure their representation in HIV research.

Nothing About Us, without Us." How Community-Based Participatory Research Methods Were Adapted in an Indigenous End-of-Life Study Using Previously Collected Data-ERRATUM.

La recherche en sante autochtone au Canada a ete negligee dans le passe et qualifiee de problematique, notamment en raison du manque de collaboration avec les peuples autochtones. L'Enonce de politique des trois Conseils sur l'ethique de la recherche avec des etres humains decrit au chapitre 9 la conduite ethique de la recherche axee sur les Premieres nations, les Inuits et les Metis. Les principes PCAP® des Premieres nations (propriete, controle, acces et possession) soulignent l'importance majeure de l'engagement et de la gouvernance autochtones. En vue d'assurer que les buts et les activites de la recherche developpee soient realises en partenariat complet et significatif avec les peuples et les communautes autochtones, il est possible de faire appel a des methodes de recherche participative communautaire (RPC) integrant leur plein engagement. Les recherches utilisant des ensembles de donnees secondaires, telles que les donnees administratives sur la sante recueillies en routine, ne devraient plus etre exclues de cette approche. Notre objectif etait de decrire comment notre equipe de chercheurs universitaires, alliee a un organisme national de sante autochtone, a adapte les methodes de RPC dans le cadre d'un projet de recherche utilisant des donnees recueillies anterieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous decrivons le processus d'elaboration de ce partenariat de recherche et expliquons comment l'integration des principes de base et des processus de formation du savoir autochtones ont guide cette collaboration. Notre partenariat de recherche, qui implique l'adaptation de methodes de RPC, illustre un processus d'engagement qui pourrait guider d'autres chercheurs desirant mener des recherches en sante autochtone a l'aide de donnees deja recueillies. Nous faisons aussi etat d'une entente de recherche transparente, negociee equitablement entre un organisme national de sante autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s'assurer que les perspectives autochtones soient au cœur des processus de recherche et qu'elles soient refletees dans ceux-ci lorsque des donnees administratives sur la sante sont utilisees. Indigenous health research in Canada has a chequered past and has been identified as problematic and lacking in appropriate collaboration with Indigenous people. The Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans, Chapter 9 describes ethical conduct of research regarding First Nations, Inuit, and Metis Peoples. First Nations Ownership, Control, Access, and Possession (OCAP®) Principles highlight the necessity of Indigenous engagement and governance. To ensure that the aims and activities of the research being developed are in full and meaningful partnership with Indigenous peoples and communities, community-based participatory research (CBPR) methods provide a process in which full engagement is possible. Research utilizing secondary data sets, such as routinely collected health administrative data, should no longer be excluded from this approach. Our aim was to describe how our research team of academic researchers and a national Indigenous health organization adapted CBPR methods in a research project using previously collected data to examine end-of-life health care service delivery gaps for Indigenous people in Ontario. We describe the process of how we developed our research partnership and how grounding principles and Indigenous ways of knowing guided our work together. Through the adaptation of CBPR methods, our research partnership illustrates a process of engagement that can guide others hoping to conduct Indigenous health research using previously collected data. We also present a transparent research agreement negotiated equally by a national Indigenous health organization and research scientists, which can also be used as a framework for others wishing to establish similar research partnerships. Ensuring that Indigenous perspectives are central to and reflected in the research process is essential when using health administrative data.

"Nothing About Us, without Us." How Community-Based Participatory Research Methods Were Adapted in an Indigenous End-of-Life Study Using Previously Collected Data.

RÉSUMÉLa recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L’Énoncé de politique des trois Conseils sur l’éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l’importance majeure de l’engagement et de la gouvernance autochtones. En vue d’assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d’un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d’élaboration de ce partenariat de recherche et expliquons comment l’intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l’adaptation de méthodes de RPC, illustre un processus d’engagement qui pourrait guider d’autres chercheurs désirant mener des recherches en santé autochtone à l’aide de données déjà recueillies. Nous faisons aussi état d’une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s’assurer que les perspectives autochtones soient au cœur des processus de recherche et qu’elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.

A Photovoice Project: Urban Elementary Girls’ Perspectives on Physical Activity

Photovoice is a community-based participatory research method where participants can showcase their life experiences through photography. The objective of this study was to have adolescent girls attending an after-school program use photovoice to represent their perceptions of physical activity practices. Photovoice was used to allow adolescent girls to express their perspectives, through photographs and narratives, of their personal and community strengths and concerns related to their involvement in physical activity. The phenomenological methodology was used as a framework for the study. Qualitative analyses were conducted throughout the research process. Constant comparison was used to analyze the focus group, scrapbook data, and notes recorded by the author to determine key themes and ideas. Participants for the study included 14 girls attending a school in an urban area. Benefits of physical activity as provided by the girls in their personal lives and the community included: understanding activity contributed to wellness, increased social opportunities, and the school as a hub of activities. Personal and community barriers to physical activity included: lack of neighbourhood safety, being involved in other sedentary activities, parental rules restricting outside play, outside conditions, personal choices to not exercise, and a lack of opportunity to exercise. Potential ways to increase physical activity among these participants are to create more group games and activities at the after-school program daily. Involving parents in activities with the girls at home may increase physical activity levels while at home.