Attitudes towards health research participation: a qualitative study of US Arabs and Chaldeans.

BACKGROUND: The Arab Muslim and Chaldean Christian American community is unified by language but culturally diverse. Researchers are challenged to engage the Arab/Chaldean community to meet immigrant health needs. Arabs/Chaldeans are identified as white in clinical data sets making it difficult to identify health behaviours and patterns unique to the community. OBJECTIVES: To explore the views of members of the Arab/Chaldean community, including researchers and the lay public, regarding health research participation and the role of clinicians, researchers and community leaders in the research process. METHODS: A qualitative study of Arab and Chaldean adults and researchers conducted in a US community with a large Arab/Chaldean population. Five semi-structured focus group discussions were triangulated with five in-depth semi-structured interviews with Arab or Chaldean primary care researchers. Responses were audio-recorded and transcribed verbatim. Transcripts were coded and thematically analysed, and findings confirmed with community representatives. RESULTS: Three themes were identified: (i) research expectations: risks and benefits; (ii) health care environment: clinicians as recruiters and (iii) research participations: risks and benefits. Themes captured concerns with social relationships, reputation or trust and the cost and benefit of research participation. In the Arab/Chaldean community, institutional and political fears and distrust are amplified. Respect for physicians, teachers and faith leaders connected with or recruiting for studies enhances likelihood of research participation. CONCLUSION: Clinical researchers should address the cultural and immigration histories of Arab/Chaldean research participants. Studies that maximize trust will minimize participation bias and lay the groundwork for improved health. Institutional, sociocultural and personal factors require a pre-study phase to engage and educate participants.

Team Science Approach to Developing Consensus on Research Good Practices for Practice-Based Research Networks: A Case Study.

Using peer learning strategies, seven experienced PBRNs working in collaborative teams articulated procedures for PBRN Research Good Practices (PRGPs). The PRGPs is a PBRN-specific resource to facilitate PBRN management and staff training, to promote adherence to study protocols, and to increase validity and generalizability of study findings. This paper describes the team science processes which culminated in the PRGPs. Skilled facilitators used team science strategies and methods from the Technology of Participation (ToP®), and the Consensus Workshop Method to support teams to codify diverse research expertise in practice-based research. The participatory nature of "sense-making" moved through identifiable stages. Lessons learned include (1) team input into the scope of the final outcome proved vital to project relevance; (2) PBRNs with diverse domains of research expertise contributed broad knowledge on each topic; and (3) ToP® structured facilitation techniques were critical for establishing trust and clarifying the "sense-making" process.

Practice-based Research Network Research Good Practices (PRGPs): Summary of Recommendations.

INTRODUCTION: Practice-based research networks (PBRNs) conduct research in community settings, which poses quality control challenges to the integrity of research, such as study implementation and data collection. A foundation for improving research processes within PBRNs is needed to ensure research integrity. METHODS: Network directors and coordinators from seven U.S.-based PBRNs worked with a professional team facilitator during semiannual in-person meetings and monthly conference calls to produce content for a compendium of recommended research practices specific to the context of PBRNs. Participants were assigned to contribute content congruent with their expertise. Feedback on the draft document was obtained from attendees at the preconference workshop at the annual PBRN meeting in 2013. A revised document was circulated to additional PBRN peers prior to finalization. RESULTS: The PBRN Research Good Practices (PRGPs) document is organized into four chapters: (1) Building PBRN Infrastructure; (2) Study Development and Implementation; (3) Data Management, and (4) Dissemination Policies. Each chapter contains an introduction, detailed procedures for each section, and example resources with information links. CONCLUSION: The PRGPs is a PBRN-specific resource to facilitate PBRN management and staff training, to promote adherence to study protocols, and to increase validity and generalizability of study findings.

Use of community engagement strategies to increase research participation in practice-based research networks (PBRNs).

PURPOSE: Practice-based research networks (PBRNs) are increasingly encouraged to use community engagement approaches. The extent to which PBRNs engage clinic and community partners in strategies to recruit and retain participants from their local communities (specifically racial/ethnic communities) is the focus of this study. METHODS: The design was a cross-sectional survey of PBRN directors in the United States. Survey respondents indicated whether their research network planned for, implemented, and has capacity for activities that engage clinic and community partners in 7 recommended strategies organized into study phases, called the cycle of trust. The objectives of the national survey were to (1) describe the extent to which PBRNs across the United States routinely implement the strategies recommended for recruiting diverse patient groups and (2) identify factors associated with implementing the recommended strategies. RESULTS: The survey response rate was 63%. Activities that build trust often are used more with clinic partners than with community partners. PBRNs that adopt engagement strategies when working with clinic and community partners have less difficulty in recruiting diverse populations. Multivariate analysis showed that the targeting racial/ethnic communities for study recruitment, Clinical and Translational Science Award affiliation, and planning to use community engagement strategies were independent correlates of PBRN implementation of the recommended strategies. CONCLUSION: PBRNs that successfully engage racial/ethnic communities as research partners use community engagement strategies. New commitments are needed to support PBRN researchers in developing relationships with the communities in which their patients live. Stable PBRN infrastructure funding that appreciates the value of maintaining community engagement between funded studies is critical to the research enterprise that values translating research findings into generalizable care models for patients in the community.

Cultivating a cycle of trust with diverse communities in practice-based research: a report from PRIME Net.

PURPOSE: Practice-based research networks (PBRNs) are increasingly seen as important vehicles to translate research into practice, although less is known about the process of engaging diverse communities in PBRN research. The objective of this study was to identify strategies for successfully recruiting and retaining diverse racial/ethnic communities into PBRN research studies. METHODS: This collaborative, multisite study engaged 5 of the 8 networks of the PRImary care MultiEthnic Network (PRIME Net) consortium that conducts research with traditionally underrepresented/underserved populations. We used a sequential, qualitative research design. We first conducted 1 key informant interview with each of 24 researchers experienced in recruiting research participants from 5 racial/ethnic communities (African American, Arab/Chaldean, Chinese, Hispanic, and Native American). Subsequently, we conducted 18 focus groups with 172 persons from these communities. RESULTS: Participants' comments indicated that successful recruitment and retention of underrepresented populations in PBRN studies is linked to the overall research process. This process, which we termed the cycle of trust, entailed developing and sustaining relationships of trust during 4 interrelated stages: before the study, during study recruitment, throughout study conduct, and after study completion. Participants identified a set of flexible strategies within each stage and called for close engagement with clinic and community partners. CONCLUSIONS: Our participants suggest that approaches to research that lay a foundation of trust, demonstrate respect for community members, and extend beyond the enrollment and data collection phases are essential to enhance the participation of diverse populations in PBRN research. These findings offer the PBRN community a guide toward achieving this important goal.

Estimating health literacy in family medicine clinics in metropolitan Detroit: a MetroNet study.

OBJECTIVE: Assessing health literacy during the clinical encounter is difficult. Many established instruments are lengthy and not practical for use in a busy practice setting. Our objective was to compare the performance of 3 health literacy screening questions against the Short Test of Functional Health Literacy for Adults (S-TOFHLA) in an urban, ethnically diverse primary care practice-based research network. METHODS: A convenience sample of patients in clinics in the Detroit area were recruited to complete a questionnaire that included the S-TOFHLA and 3 items similar to the Chew screening questions. Area under the receiver operating characteristic (AUROC) curves compared the test characteristics of the screening questions to the S-TOFHLA. RESULTS: The participation rate was 92% (N = 599). Most participants were women (65%) and African American (51%); 51.8% had a household annual income of <$20,000. Almost all (96.7%) had an adequate score on the S-TOFHLA. The screening question with the largest AUROC (0.83; 95% CI, 0.70-0.95) was "How often do you have someone help you read instructions, pamphlets or other written materials from your doctor or pharmacy?"; the AUROC for all 3 questions was 0.90 (95% CI, 0.85-0.95). CONCLUSIONS: Self-administration of the 3 screening questions demonstrated high performance compared with the 36-item S-TOFHLA interview instrument. These screening questions should help providers identify patients who may need extra support to follow health prescriptions.

Postpartum doulas: motivations and perceptions of practice.

OBJECTIVE: To describe the perceptions of a US cohort of experienced birth doulas who were among the first in the country to be trained to provide postpartum support. DESIGN: A qualitative, longitudinal study using ethnographic methods; participant observation and semi-structured interviews. SETTING: Midwestern, urban, US; postpartum home care over three months. PARTICIPANTS: Four postpartum doulas; 13 families. MEASUREMENTS: Participant observation during six postpartum home visits per family; 13 semi-structured interviews with doulas at the completion of each family's care; four summative interviews with doulas at the end of the study. FINDINGS: When describing their postpartum practice, four themes emerged: supporting women, taking the mother's perspective, empowering women and empowering families. When speaking of the motivations, three themes emerged: being 'called' to practice, interest in preventing negative experiences, and career development. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: In the US, new mothers see midwives and doctors sporadically after discharge from the hospital. Postpartum doulas fill this gap in continuity of care by providing support for families as they transition to life with their new infant. Understanding the beliefs, values and practices of these important paraprofessionals will help midwives effectively integrate postpartum doula care into the care of women and infants.

Phases of "pre-engagement" capacity building: discovery, exploration, and trial alliance.

BACKGROUND: Academic prevention researchers who engage limited-resource communities may find that organizational or community capacity for prevention is low. Community organizations, neighborhoods, and academic partners may lack shared issue awareness, mutual interests, and interactive skills necessary for collaborative intervention. Existing capacity building models either ignore a 'pre-engagement' phase or acknowledge it without offering strategic detail. An exploratory or developmental phase before active engagement can be achieved through co-located work in a community setting. The construct, "ecology of practice," provides conceptual background for examining how "shared work" introduces and prepares partners for future collaboration consistent with community-based participatory research (CBPR) principles. OBJECTIVE: This paper presents two case studies where pre-engagement capacity building involved partners who were initially unaware, disinterested, or unable to engage in preventive interventions. These cases illustrate how mutual participation in shared "ecologies of practice" enabled an exchange of cultural knowledge, skill, and language that laid the groundwork for future preventive intervention. METHODS: A trajectory of developmental work in each case occurred over 5 years. Historical timelines, interviews, and personal communications between community and academic leaders were reviewed and common themes identified. A model of "pre-capacity building" emerged. CONCLUSION: Capacity-building models that detail strategies for developing equitable engagement in under-resourced settings will more effectively move best practices into vulnerable communities. Preventive interventions must be translated equitably if health disparities are to be reduced.

Perceptions of training in occupational and environmental medicine among family medicine residents.

OBJECTIVE: Although knowledge of occupational and environmental medicine (OEM) is important for effective primary health care practice, few studies have examined physicians' appraisals of training in OEM. We evaluated family medicine residents' perceptions of a 4-week rotation in OEM that combined lectures, worksite visits, and clinical placements. METHODS: Qualitative analysis of residents' rotation evaluations (n = 208) collected between 2002 and 2008. Subjective appraisals were compared with quantitative changes in resident knowledge of OEM measured by pre- and posttests. RESULTS: Residents' perceptions of the usefulness of the OEM rotation were grouped into three main categories: knowledge, experience, and skill development. Posttest scores demonstrated significantly improved knowledge in key OEM subject areas. CONCLUSIONS: Residents gained knowledge and insight regarding the possible impact of work on patients' health and considered the rotation highly relevant to their family medicine practice.

Active for life: final results from the translation of two physical activity programs.

BACKGROUND: Most evidence-based programs are never translated into community settings and thus never make a public health impact. DESIGN: Active for Life (AFL) was a 4-year translational initiative using a pre-post, quasi-experimental design. Data were collected from 2003 to 2007. Analyses were conducted in 2005 and 2008. SETTING/PARTICIPANTS: Nine lead organizations at 12 sites participated. Active Choices participants (n=2503) averaged 65.8 years (80% women, 41% non-Hispanic white). Active Living Every Day (ALED) participants (n=3388) averaged 70.6 years (83% women, 64% non-Hispanic white). INTERVENTION: In AFL, Active Choices was a 6-month telephone-based and ALED a 20-week group-based lifestyle behavior change program designed to increase physical activity, and both were grounded in social cognitive theory and the transtheoretical model. The interventions were evaluated in Years 1, 3, and 4. An adapted shortened ALED program was evaluated in Year 4. MAIN OUTCOME MEASURE: Moderate- to vigorous-intensity physical activity, assessed with the CHAMPS self-reported measure. RESULTS: Posttest survey response rates were 61% for Active Choices and 70% for ALED. Significant increases in moderate- to vigorous-intensity physical activity, total physical activity, and satisfaction with body appearance and function, and decreases in BMI were seen for both programs. Depressive symptoms and perceived stress, both low at pretest, also decreased over time in ALED. Results were generally consistent across years and sites. CONCLUSIONS: Active Choices and ALED were successfully translated across a range of real-world settings. Study samples were substantially larger, more ethnically and economically diverse, and more representative of older adult's health conditions than in efficacy studies, yet the magnitude of effect sizes were comparable.

Results of the first year of active for life: translation of 2 evidence-based physical activity programs for older adults into community settings.

OBJECTIVES: Translating efficacious interventions into practice within community settings is a major public health challenge. We evaluated the effects of 2 evidence-based physical activity interventions on self-reported physical activity and related outcomes in midlife and older adults. METHODS: Four community-based organizations implemented Active Choices, a 6-month, telephone-based program, and 5 implemented Active Living Every Day, a 20-week, group-based program. Both programs emphasize behavioral skills necessary to become more physically active. Participants completed pretest and posttest surveys. RESULTS: Participants (n=838) were aged an average of 68.4 +/-9.4 years, 80.6% were women, and 64.1% were non-Hispanic White. Seventy-two percent returned posttest surveys. Intent-to-treat analyses found statistically significant increases in moderate-to-vigorous physical activity and total physical activity, decreases in depressive symptoms and stress, increases in satisfaction with body appearance and function, and decreases in body mass index. CONCLUSIONS: The first year of Active for Life demonstrated that Active Choices and Active Living Every Day, 2 evidence-based physical activity programs, can be successfully translated into community settings with diverse populations. Further, the magnitudes of change in outcomes were similar to those reported in the efficacy trials.