Conducting Research with Latino Families: Examination of Strategies to Improve Recruitment, Retention, and Satisfaction with an At-Risk and Underserved Population

Haack, Lauren M.; Gerdes, Alyson C.; Lawton, Kathryn E.

doi:10.1007/s10826-012-9689-7

Cited by 42 publications

(44 citation statements)

References 19 publications

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“…These results are consistent with previous studies that the implementation of culture-specific strategies successfully leads to the recruitment and retention of Latinos (Cabral Haack et al 2014;Kao et al 2011;McClure et al 2013). Furthermore, these findings are consistent with previous findings indicating that minority families are as willing as majority ethnic groups to participate in research once they have been invited and have access to the study information in a language they understand (Wendler et al 2005).…”

Section: Discussionsupporting

confidence: 92%

“…A study of women involved in cancer research found that outreach to potential participants who were low-income and/or members of ethnic minority groups were less effective when using traditional recruitment efforts which were found effective for members of majority populations of higher socioeconomic status (Brown et al 2000). Similarly, behavioral health and health research has identified other culturally sensitive strategies at the participant level that contribute to successful recruitment and retention of Latino participants, including: (1) partnering with community agencies, (2) reassuring families that information will be kept confidential, (3) ongoing (face to face) contact with families, (4) arranging child care and transportation to minimize barriers, (5) providing information about the study in Spanish, (6) recruiting bilingual research staff, (7) providing follow up support and access to additional services, and (8) providing a flexible schedule (Cabral et al 2003;McClure et al 2013;Haack et al 2014). The importance of face-toface contact at the outset has been reinforced in some studies that report their study outreach staff members were able to overcome some of the barriers to recruitment of populations underrepresented in research reported in the literature (Cabral et al 2003;Kao et al 2011).…”

Section: Introductionmentioning

confidence: 99%

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Brief Report: Recruitment and Retention of Minority Children for Autism Research

Zamora

Williams

Higareda

et al. 2015

J Autism Dev Disord

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Given the underrepresentation of ethnic minorities in health research (Heiat et al. in Arch Int Med 162(15):1-17, 2002; Kelly et al. in J Nat Med Assoc 97:777-783, 2005; United States Department of Health and Human Services. Monitoring adherence to the NIH policy on the inclusion of women and minorities as subjects in clinical research. http://orwh.od.nih.gov/research/inclusion/reports.asp , 2013), this study evaluated promising strategies to effectively recruit Latinos into genetic research on autism spectrum disorders (ASD). The study included 97 children, aged 5-17 years, with ASD; 82.5 % of the participants were identified as Latino/Hispanic. Traditional and culture-specific recruitment and retention strategies were compared between the Latino and non-Latino groups. Culture-specific, parent-centered approaches were found to be successful in engaging and retaining Latino participants for research involving genetic testing.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Brief Report: Recruitment and Retention of Minority Children for Autism Research

Zamora

Williams

Higareda

et al. 2015

J Autism Dev Disord

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“…Cultural and linguistic competency have been noted to be critical to retention of minority participants in a variety of settings and populations, including in qualitative research [17], studies on minority girls and women [18], and evaluations of mental-health disparities for Latino children [19]. Research staff building relationships and trust has been cited as essential to retention in studies of minority girls and women [18] and of weight and hypertension management in primarily minority adults [20]. Comprehensive contact information for participants and their relatives, friends, and neighbors has been identified as crucial to retention in an analysis of trials by the NIH Behavior Change Consortium and two retention literature reviews.…”

Section: Discussionmentioning

confidence: 99%

A successful approach to minimizing attrition in racial/ethnic minority, low-income populations

Flores

Portillo

Lin

et al. 2017

Contemporary Clinical Trials Communications

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BackgroundRecruiting and retaining minority participants in clinical trials continue to be major challenges. Although multiple studies document lower minority trial enrollment, much less is known about effective minority retention strategies. Our objectives were to evaluate an innovative approach to high RCT retention of minority children, and identify child/caregiver characteristics predicting attrition.MethodsThe Kids' HELP trial examined the effects of Parent Mentors on insuring uninsured minority children. We tested a retention strategic framework consisting of: 1) optimizing cultural/linguistic competency; 2) staff training on participant relationships and trust; 3) comprehensive participant contact information; 4) an electronic tracking database; 5) reminders for upcoming outcomes-assessment appointments; 6) frequent, sustained contact attempts for non-respondents; 7) financial incentives; 8) individualized rapid-cycle quality-improvement approaches to non-respondents; 9) reinforcing study importance; and 10) home assessment visits. We compared attrition in Kids' HELP vs. two previous RCTs in similar populations, and conducted bivariate and multivariable analyses of factors associated with Kids' HELP attrition.ResultsAttrition in Kids' HELP was lower than in two similar RCTs, at 10.9% vs. 37% and 40% (P < 0.001). After multivariable adjustment, missing the first outcomes follow-up assessment was the only factor significantly associated with attrition (relative risk = 1.5; 95% confidence interval, 1.1–2.0).ConclusionsA retention strategic framework was successful in minimizing attrition in minority, low-income children. Participants missing first assessment appointments were at highest risk of subsequent attrition. These findings suggest that deploying this framework may help RCT retention of low-income minority children, particularly those at the highest risk of subsequent attrition.

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“…Among Hispanics/Latinos, traditional cultural values such personalismo, respeto, familismo and gender norms are important factors to consider throughout all aspects of the study. 21,22 While findings in literature have identified important components described previously that may be predictive of study participation and retention, 19 no research to date, to our knowledge, has focused on evaluating the relative effectiveness of these strategies for recruiting and retaining Hispanic/Latino participants. Recruiting and retaining participants is especially challenging for prospective population-based studies which, in part, is due to the length involved in longitudinal cohort studies.…”

Section: Participation Satisfaction With Examination Visit -Talavera mentioning

confidence: 98%

“…Agreement between coders was 95%, which is considered an acceptable level of agreement. 21 In cases where there was disagreement, the coders discussed the themes and were able to reach an agreement. Of the total 213 responses coded, 16 responses were determined to be low frequency responses or did not fit the themes identified in this study.…”

Section: Participant Feedback Assessed Through Open-ended Questionsmentioning

confidence: 99%

Levels of Participants Satisfaction with Initial Contact and Examination Visit: The Hispanic Community Health Study/ Study of Latinos (HCHS /SOL)

et al. 2016

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Objective: This study examined perceived satisfaction among Hispanic/Latino individuals who participated in a baseline examination for the Hispanic Community Health Study/Study of Latinos (HCHS/SOL), a large cohort study of 16,415 adults living in four selected communities.Method: An estimated 22% (n= 3,584) of participants completed a questionnaire regarding satisfaction with staff attention, the overall experience during the study examination, and the influence of the informed consent digital video disc (DVD). Results:The majority of participants who completed the questionnaire expressed overall satisfaction with the study. Most participants reported that staff were friendly, courteous and respectful and study test procedures were clearly explained. Participants who preferred to complete the interview in Spanish felt that the informed consent DVD positively influenced their ability to make an informed decision to enroll in the study. Participants who preferred to complete the interview in English tended to report that the baseline examination was longer than expected compared with participants who completed the interview in Spanish. Conclusion:Results demonstrate that culturally and linguistically trained staff and the use of the study's informed consent DVD were effective in explaining study procedures and positively influenced decisions to participate in the HCHS/SOL study. These results can inform recruitment and enrollment strategies for future participation of minority groups into longitudinal cohort studies.

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Conducting Research with Latino Families: Examination of Strategies to Improve Recruitment, Retention, and Satisfaction with an At-Risk and Underserved Population

Cited by 42 publications

References 19 publications

Brief Report: Recruitment and Retention of Minority Children for Autism Research

Brief Report: Recruitment and Retention of Minority Children for Autism Research

A successful approach to minimizing attrition in racial/ethnic minority, low-income populations

Levels of Participants Satisfaction with Initial Contact and Examination Visit: The Hispanic Community Health Study/ Study of Latinos (HCHS /SOL)

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