The aim of this article is to describe the methods and effectiveness of the Public Engagement in Genetic Variation and Haplotype Mapping Issues (PEGV) Project, which engaged a community in policy discussion about genetic variation research. The project implemented a 6-stage community engagement model in New Rochelle, New York. First, researchers recruited community partners. Second, the project team created community oversight. Third, focus groups discussed concerns generated by genetic variation research. Fourth, community dialogue sessions addressed focus group findings and developed policy recommendations. Fifth, a conference was held to present these policy recommendations and to provide a forum for HapMap (haplotype mapping) researchers to dialogue directly with residents. Finally, findings were disseminated via presentations and papers to the participants and to the wider community beyond. The project generated a list of proposed guidelines for genetic variation research that addressed the concerns of New Rochelle residents. Project team members expressed satisfaction with the engagement model overall but expressed concerns about how well community groups were utilized and what segment of the community actually engaged in the project. The PEGV Project represents a model for researchers to engage the general public in policy development about genetic research. There are benefits of such a process beyond the desired genetic research. (Population Health Management 2012;15:78–89)
This study informs healthcare approaches to gender-based family violence through focus groups with Jordanian women. The authors conducted a thematic qualitative analysis of 12 focus groups among 70 married, divorced, or widowed women about their experiences and beliefs regarding family violence. Five themes relevant to healthcare providers were identified. Three of the themes addressed participant-perceived causes of gender-based family violence: 1) unmet gender role expectations, 2) stigma and social norms, and 3) extended family roles. The fourth theme reflects effects on victims. The fifth theme reflects protective qualities and help seeking behaviors. The themes identified in the analysis reveal multiple ways that gender-based family violence can contribute to health problems and that it can be kept secret by Jordanian women as patients. Potential clues are described for the violence which may not be typically explored in a medical encounter. Additional ways that Jordanian families may seek help from other family or clergy instead of police and family violence agencies are described. Implications of these results for healthcare providers who care both for Jordanians and Arab immigrants in Western cultures are discussed.
HIV and sexually transmitted human papillomavirus (HPV) are associated with each other and with the development of comorbid cancer. Current epidemiology indicates that among Pacific Islanders in the United States, young adults are at highest risk of HIV and HPV. In our inductive community based participatory research study, we used focus groups and key informant interviews (March – August 2010) with young adults, parents, community leaders, and providers (n = 95) to identify and contextualize factors that shape HIV and HPV risk and prevention among young adults in Chamorro and Tongan communities in Southern California. We identified nine themes that incorporated the following principal factors: misinformation and otherization; dominant concerns regarding premarital pregnancy; restricted intergenerational communication; family shame and privacy; gendered manifestations of religio-cultural norms; barriers impeding access to sexual health resources; parents’ role in prevention; community vs. individual responsibility; and family and ethnic pride. Our thematic findings fit well with Rhodes’ “risk and enabling environment” heuristic (2009), which we used to contextualize risk and prevention at micro and macro levels of physical...
We present baseline data and describe the utility of a community engaged, culturally relevant approach to recruiting African American youth and families for phase I of The AAKOMA Project. The AAKOMA Project is a two phase treatment development study to improve mental health service use among depressed African American youth. We completed capacity building activities using a community engaged framework and Community Based Participatory Research (CBPR) methods. Replicating the (Alvarez et al. in West J Nurs Res 28:541–560, 2006) model of systematic community out-reach enhanced our ability to effectively recruit partners and evaluate outreach efforts as demonstrated by our Recruitment Success Factor (RSF—i.e. ‘an adjusted ratio of eligible participant yield to contacts made’). Using the chi-square goodness-of-fit statistic; we compared the RSFs of the various modes of participant study entry to determine which was most effective. Our target enrollment was 56 persons. We recruited 130 and enrolled 57. Our baseline data is drawn from a gender balanced and socioeconomically diverse sample who participated in youth focus groups and individual interviews and adult focus groups. We identified 3 study participant referral modes (self-referral...
A research question was posed to us by a local HIV-resource organization interested in exploring the educational and service needs of those unreached. In order to properly address this inquiry, we developed a community-based participatory research by training peer-led volunteers to facilitate focus-group discussions within Aboriginal and refugees participants following an interview guide. We gathered Aboriginal people and refugees separated into three focus groups each, enrolling a total of 41 self-identified HIV-positive, 38 males. The discussions were tape recorded upon consent and lasted between 59 and 118 minutes. We analyzed the thematic information collected interactively through constant comparison. The qualitative data leading to categories, codes, and themes formed the basis for the spatial representation of a conceptual mapping. Both groups shared similar struggles in living with HIV and in properly accessing local nonmedical HIV resources and discussed their concerns towards the need for empowerment and support to take control of their health.
The housing status of persons with HIV/AIDS is a central issue in their care and prognosis. We conducted eight focus groups to explore the housing needs of special populations of persons with HIV/AIDS in New York State; these populations included substance users, ex-offenders, persons with documented histories of homelessness, and rural dwellers/migrant workers. For the focus groups, 52 participants were recruited from the clientele of health and social service agencies. A major theme was the potent effect that housing situations had on participants’ health. Participants frequently attributed lowered T-cell counts and increased lethargy to the stress associated with governmental rules and paperwork. Lack of money, inadequacy of entitlements, and high costs of housing were the major barriers to securing stable and appropriate housing. Furthermore, participants experienced housing discrimination based on HIV status and experience with the criminal justice system or drugs.
This study aimed to identify barriers and facilitators of mental health care for patients with trauma histories via qualitative methods with clinicians and administrators from primary care clinics for the underserved. Individual interviews were conducted, followed by a combined focus group with administrators from three jurisdictions; there were three focus groups with clinicians from each clinic system. Common themes were identified, and responses from groups were compared. Administrators and clinicians report extensive trauma histories among patients. Clinician barriers include lack of time, patient resistance, and inadequate referral options; administrators cite reimbursement issues, staff training, and lack of clarity about the term trauma. A key facilitator is doctor-patient relationship. There were differences in perceived barriers and facilitators at the institutional and clinical levels for mental health care for patients with trauma. Importantly, there is agreement about better access to and development of trauma-specific interventions. Findings will aid the development and implementation of trauma-focused interventions embedded in primary care.
BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA’s decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.
The objectives of this study were to study maternal preferences for the return of their child’s genetic results and to describe the experiences, perceptions, attitudes and values that are brought to bear when individuals from different racial and cultural backgrounds consider participating in genetic research. We recruited women with diverse sociodemographic profiles to participate in seven focus groups. Twenty-eight percent of participants self-identified as Hispanic; 49% as White, Non-Hispanic; and 21% as Asian or Asian American. Focus groups were conducted in English or Spanish and were audio-recorded and transcribed verbatim. Transcripts were analyzed using qualitative thematic methods. Results indicated that preferences and decisions regarding the return of results may depend on both research and individual contextual factors. Participants understood the return of results as a complex issue, where individual and cultural differences in preferences are certain to arise. Another key finding was that participants desired an interpersonal, dynamic, flexible process that accommodated individual preferences and contextual differences for returning results. Our findings indicate a need to have well-developed systems for allowing participants to make and change over time their choices regarding the return of their child’s genetic results.
Black adolescents with mental health problems are less likely than non-Black adolescents with mental health problems to receive treatment, primarily for non-financial reasons including negative perceptions of services and providers, and self-stigma associated with experiencing mental health problems. To better understand these obstacles, 16 adolescents and 11 caregivers, recruited from two K-8th grade elementary-middle schools, participated in four focus groups guided by the unified theory of behavior to explore mental health help-seeking behaviors and perceptions of mental health services. In the focus groups, caregivers acknowledged more positive attitudes about seeking mental health services than adolescents, but both expected the experience of actually doing so to be negative. Adolescents and caregivers also acknowledged social norms that inhibit their mental health help-seeking. Therefore, we conclude that interventions targeting expectancies and social norms might increase the connection of urban, under-resourced Black adolescents and their families to mental health services, and be particularly important given the long-term consequences of untreated mental health problems for this group.
A population-based pilot study of newborns screening for a rare genetic condition, spinal muscular atrophy (SMA), is being conducted with funding from the National Institutes of Health. The first component of the study is to assess the ethical, legal and social implications of population-based pilot studies with a focus on public engagement and parental decision-making for the proposed opt-out approach in this research. We conducted focus groups with members of the general public to ascertain attitudes about the pilot study and acceptability of an opt-out approach in two states, Colorado and Utah, where the pilot screening is being proposed (N = 70). We developed an informational video for the project and showed it to the groups prior to the discussion in order to inform participants about population-based research, newborn screening, permission/consent models, and SMA.
High rates of youth pregnancy and STIs play a major role in the physical, mental, and emotional health of young people. Despite efforts to provide sexuality education through diverse channels, we know little about the ways in which young people perceive school- and community-based efforts to educate them about sexual health. Forty-eight African-American young people participated in six focus groups to discuss their sexuality education experiences. Three major themes emerged that highlight experiences and perspectives on optimal strategies for promoting sexual health. These themes were: 1) experiences with school-based sexuality education (SBSE); 2) seeking information outside of schools; and 3) general principles of youth-centered sexuality education. Young people in the focus groups expressed their varying satisfaction with SBSE due to the restricted content covered and lack of comfort with the instruction methods. Participants described how they reached outside of SBSE for sexuality education, turning to those in the community, including local organisations, health care providers, and peers, also expressing variability in satisfaction with these sources. Finally, participants identified three important principles for youth-centred sexuality education: trust and confidentiality...
The purpose of the study was to modify, test, and refine the Homework, Organization, and Planning Skills (HOPS) intervention for adolescents with ADHD for use by school mental health (SMH) providers. Ten SMH providers from three school districts implemented the HOPS intervention with 11 middle school students with ADHD. Parent and teacher ratings of materials organization and homework management were collected pre- and post-intervention and treatment fidelity was assessed. SMH providers and teachers participated in focus groups and provided feedback on ways to improve the feasibility and usability of the HOPS intervention. Students made large improvements in organization skills (d = 1.8) and homework problems (d = 1.6) according to parent ratings however, no improvements were observed on teacher ratings. Qualitative data generated from coding the focus groups and audio-recorded HOPS sessions were combined with the quantitative results to systematically refine the HOPS intervention for further evaluation of intervention effectiveness and disseminability.
Obesity is a significant public health concern that disproportionally affects low-income and minority populations. Recent policies mandating the posting of calories on menus in fast food chain restaurants have not proven to uniformly influence food choice. This qualitative research study uses focus groups to study individual and environmental factors affecting the usage of these menu labels among low-income, minority populations. Ten focus groups targeting low-income residents (n=105) were conducted at various community organizations throughout NYC in Spanish, English, or a combination of both languages, over a nine-month period in 2011. In late 2011 and early 2012, transcripts were coded through the process of thematic analysis using Atlas.ti for naturally emerging themes, influences, and determinants of food choice. Few used menu labels, despite awareness. Among the themes pertaining to menu label usage, price and time constraints, confusion and lack of understanding of caloric values, as well as the priority of preference, hunger, and habitual ordering habits were most frequently cited as barriers to menu label usage. Based on the individual and external influences on food choice that often take priority over calorie consideration...
African-Americans and Blacks have low participation rates in clinical trials and reduced access to aggressive medical therapies. Hematopoietic cell transplantation (HCT) is a high-risk investigational but potentially curative therapy for sickle-cell disease (SCD), a disorder predominantly seen in African-Americans. We conducted focus groups to better understand participation barriers to HCT clinical trials for SCD. Nine focus groups of youth with SCD (n=10) and parents (n=41) were conducted at three sites representing the Midwest, South Atlantic and West South Central US. Main barriers to clinical trial participation included gaps in knowledge about SCD, limited access to SCD/HCT trial information and mistrust of medical professionals. For education about SCD/HCT trials, participants highly preferred one-on-one interactions with medical professionals and electronic media as a supplement. Providers can engage with sickle cell camps to provide information on SCD/HCT clinical trials to youth and local health fairs for parents/families. Youth reported learning about SCD via computer games; investigators may find this medium useful for clinical trial/HCT education. African-Americans affected by SCD face unique barriers to clinical trial participation and have unmet HSCT clinical studies education needs. Greater recognition of these barriers will allow targeted interventions in this community to increase their access to HCT.
It is well recognized that an interdisciplinary approach is essential in the development and implementation of solutions to address the current pediatric obesity epidemic. In two half-day meetings that included workshops and focus groups, faculty from diverse fields identified critically important research challenges and gaps to childhood obesity prevention. The purpose of this white paper is to describe the iterative, interdisciplinary process that unfolded in an academic health center setting with a specific focus on under-represented minority groups of Black and Hispanic communities, and to summarize the research challenges and gaps related to pediatric obesity which were identified in the process. Although the research challenges and gaps were developed in the context of an urban setting including high risk populations (the northern Manhattan communities of Washington Heights, Inwood, and Harlem), many of the issues raised are broadly applicable. The processes by which the group identified research gaps and methodological challenges that impede a better understanding of how to prevent and treat obesity in children has resulted in an increase in research and community outreach collaborations and interdisciplinary pursuit of funding opportunities across units within the academic health center and overall University.
Although restrictive immigration policy reduces incentives for unauthorized immigrants to remain in the United States, many immigrants remain in their U.S. community in spite of the anti-immigration climate surrounding them. This study explores motivations shaping immigrants’ intentions to stay in Arizona after passage of Senate Bill 1070 in 2010, one of the most restrictive immigration policies in recent decades. We conducted three focus groups in a large metropolitan city in Arizona with Mexican immigrant parents (N = 25). Themes emerging from the focus groups described multiple and interlocking personal, family and community, and contemporary sociopolitical motivations to stay in their community, and suggest that some important motivating factors have evolved as a result of immigrants’ changing environment. Implications for research and social policy reform are discussed.
Interventions are needed to protect the health of children who live with smokers. We pilot-tested a real-time intervention for promoting behavior change in homes that reduces second hand tobacco smoke (SHS) levels. The intervention uses a monitor and feedback system to provide immediate auditory and visual signals triggered at defined thresholds of fine particle concentration. Dynamic graphs of real-time particle levels are also shown on a computer screen. We experimentally evaluated the system, field-tested it in homes with smokers, and conducted focus groups to obtain general opinions. Laboratory tests of the monitor demonstrated SHS sensitivity, stability, precision equivalent to at least 1 µg/m3, and low noise. A linear relationship (R2 = 0.98) was observed between the monitor and average SHS mass concentrations up to 150 µg/m3. Focus groups and interviews with intervention participants showed in-home use to be acceptable and feasible. The intervention was evaluated in 3 homes with combined baseline and intervention periods lasting 9 to 15 full days. Two families modified their behavior by opening windows or doors, smoking outdoors, or smoking less. We observed evidence of lower SHS levels in these homes. The remaining household voiced reluctance to changing their smoking activity and did not exhibit lower SHS levels in main smoking areas or clear behavior change; however...
This article examines the beliefs and experiences of individuals living in underserved ethnically diverse communities in Cleveland, Ohio, regarding the influence of genetic, social, and environmental factors on health and health inequalities. Using a community-engaged methodological approach, 13 focus groups were conducted with African American, Hispanic, and White individuals residing in the Cleveland area to explore attitudes and beliefs about genetics, genetic research, and health disparities and inequalities. Results of this study highlight the range of meanings that individuals attach to genetic variation, genomic research, and gene–environment interactions, and their implications for addressing health inequalities. The majority of participants in all focus groups reported that social and environmental factors were more important than genetics in contributing to health inequalities. Most participants were unfamiliar with genetic research. These data have implications for how genetic information and research might be applied in conjunction with addressing social determinants of health to improve prevention strategies in underserved communities and ultimately reduce health inequalities.
The linkage between ecosystems and human well-being is a focus of the conceptualization of “ecosystem services” as promoted by the Millennium Ecosystem Assessment. However, the actual nature of connections between ecosystems and the well-being of individuals remains complex and poorly understood. We conducted a series of qualitative focus groups with five different stakeholder groups connected to a small-scale Kenyan coastal fishery to understand (1) how well-being is understood within the community, and what is important for well-being, (2) how people’s well-being has been affected by changes over the recent past, and (3) people’s hopes and aspirations for their future fishery. Our results show that people conceive well-being in a diversity of ways, but that these can clearly map onto the MA framework. In particular, our research unpacks the “freedoms and choices” element of the framework and argues for greater recognition of these aspects of well-being in fisheries management in Kenya through, for example, more participatory governance processes.