Engagement of African American Families in Research on Chronic Illness: A Multisystem Recruitment Approach

Holder, Barbara; Turner‐Musa, Jocelyn; Kimmel, Paul L.; Alleyne, Sylvan; Kobrin, Sidney; Simmens, Samuel J.; Cruz, Illuminado; Reiss, David

doi:10.1111/j.1545-5300.1998.00127.x

Cited by 36 publications

(37 citation statements)

References 34 publications

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“…Therefore, for the purpose of this report, family dynamics are regarded as the ongoing interpersonal interactions and relationships between family members (i.e., siblings and parents) that influence decisions regarding enrollment. 8,9 The concept of integrating the CAA into regimens used in GFS resulted from performing several ethnographic studies. 10,11 Previously, we conducted in-depth, semistructured interviews of open-ended questions with DN patients and their relatives (a subset of FIND participants) to explore their health beliefs about T2DM and DN and the associated ethical issues toward participation in GFS.…”

Section: Resultsmentioning

confidence: 99%

“…Analysis: This case is representative of at least one third of the probands interviewed during previously conducted ethnographic studies. 8,9 After numerous attempts to recruit her family, the patient revealed that she had little interaction with her siblings. By identifying and excluding this subset of probands, recruiters optimize their efforts by enrolling families as opposed to willing probands with unwilling relatives.…”

Section: Contextual Assessment Approachmentioning

confidence: 99%

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Incorporating the Contextual Assessment Approach to regimens used in genetic family studies

Arar

Plaetke

Arar

et al. 2002

Genetics in Medicine

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Purpose: To develop a procedure that enhances enrollment and addresses ethical issues associated with participation in genetic family studies. Methods: The Contextual Assessment Approach (CAA) was standardized to the recruitment procedures in the Family Investigation of Nephropathy and Diabetes (FIND) study at the University of Texas Health Science Center at San Antonio. Structured interviews with the CAA questionnaire (CAA-Q) were conducted with 50 low-income Mexican-American probands. The CAA allows systematic interpretation of health beliefs, family dynamics, and attitudes regarding participation in FIND. Data analyses included qualitative and quantitative methods. Results: CAA analyses of probands' perspectives regarding relatives' enrollment in FIND facilitated recruiting 34 probands from whom 30 families were enrolled (family enrollment rate: 88%). CAA reduced recruitment efforts by 32% and avoided exerting undue pressure on unwilling participants to ensure voluntary participation. Remarkably, 76% of the subjects were unaware of any risk associated with participation in genetic family studies. Conclusions: Administering the CAA-Q before enrolling subjects in FIND increased our enrollment rate by targeting efforts toward the willing subjects and addressing ethical issues associated with their participation. Genet Med 2002:4(6):451-463. Key Words: genetic family studies, ethical issues, Contextual Assessment ApproachThe prevalence of type 2 diabetes (T2DM) in Mexican Americans is two to three times higher than in the general population, predisposing them to develop diabetic nephropathy (DN) more than non-Hispanic whites. 1 DN (occurring mainly in adults) clusters in families with T2DM, suggesting that there is a genetic susceptibility for its development and progression. 2 The main goal of the Family Investigation of Nephropathy and Diabetes (FIND) study is to identify gene(s) involved in the development of DN (http://darwin.cwru.edu/ FIND). As a Participating Investigation Center in FIND, we are recruiting Mexican-American DN probands (first affected family member recruited into the study) with a family history of T2DM and their siblings and parents living in the San Antonio metropolitan area. FIND inclusion criteria include recruiting probands who have advanced nephropathy secondary to T2DM and have both living, willing parents or at least one sibling with T2DM or DN.The success of a genetic family study (GFS) depends on recruiters' ability to enroll a sufficient number of probands and their relatives. Enrollment of probands and select family members is influenced by a variety of factors including social, cultural, and ethical components. 3 One important ethical issue is to ensure subjects' informed, voluntary consent prior to their participation in GFS. 4 Understanding these factors will enhance enrollment and address ethical issues associated with participation in GFS. In this report, we introduce the Contextual Assessment Approach (CAA), a method that we found helpful while conducting 50 structured inte...

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Section: Resultsmentioning

confidence: 99%

Section: Contextual Assessment Approachmentioning

confidence: 99%

Incorporating the Contextual Assessment Approach to regimens used in genetic family studies

Arar

Plaetke

Arar

et al. 2002

Genetics in Medicine

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“…We listen respectfully to patients' reports of symptoms and talk about possible treatments, or no treatment when none is available. We try to engage a family member and feed back information when the patient seems to be non-compliant by physical parameters (91,92). Brock (93) found that knowledge was negatively correlated to uncertainty; level of education was positively correlated with coping effectiveness.…”

Section: Compliancementioning

confidence: 98%

Psychiatric aspects of the dialysis patient

Wilson¹

2004

Replacement of Renal Function by Dialysis

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“…Rather than hiring only people with strong clinical or science backgrounds, Abshire et al 32,35 argue that a best practice for staffing longitudinal clinical research projects includes hiring staff with strong communication skills and knowledge of local communities. In addition to interpersonal skills for recruitment, other commonly cited qualities and skills include empathy, 44 which impacts how recruiters relate to participants; group communication competencies, including effective conflict resolution and consensus-building; 45 and the ability to work with interdisciplinary team members by focusing on (or training to improve) building shared meanings. 46 Through all of the interviews, we heard that the AoURP is not a typical clinical research project.…”

Section: Building and Nurturing Engagement Teamsmentioning

confidence: 99%

Best Practices for Participant and Stakeholder Engagement in the All of Us Research Program

Khodyakov¹,

Bromley²,

Evans³

et al. 2018

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Limited Print and Electronic Distribution RightsThis document and trademark(s) contained herein are protected by law. This representation of RAND intellectual property is provided for noncommercial use only. Unauthorized posting of this publication online is prohibited. Permission is given to duplicate this document for personal use only, as long as it is unaltered and complete. Permission is required from RAND to reproduce, or reuse in another form, any of its research documents for commercial use. For information on reprint and linking permissions, please visit www.rand.org/pubs/permissions.The RAND Corporation is a research organization that develops solutions to public policy challenges to help make communities throughout the world safer and more secure, healthier and more prosperous. RAND is nonprofit, nonpartisan, and committed to the public interest.RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.Support RAND Make a tax-deductible charitable contribution at www.rand.org/giving/contribute www.rand.org For more information on this publication, visit www.rand.org/t/RR2578Published by the RAND Corporation, Santa Monica, Calif. © Copyright 2018 RAND CorporationR® is a registered trademark.iii PrefaceThe All of Us Research Program (AoURP), a key component of the Precision Medicine Initiative launched by President Barack Obama in January 2015, is an ambitious and innovative research initiative led by the National Institutes of Health (NIH) with a mission to "revolutionize how we improve health and treat disease."1 The AoURP is collecting survey data, electronic health records, physical measurements, and biospecimens to build a large and diverse data set for health research. The program's goal is to engage one million or more individuals living in the United States from diverse social, racial/ethnic, geographic, and economic backgrounds, as well as from all age groups over 18, regardless of health status. The expectation is that participants will remain involved with the AoURP for at least ten years, and perhaps even longer.In response to a request from AoURP leadership, RAND researchers conducted a mixedmethods study of participant and stakeholder engagement in the AoURP to define a set of best practices that all participating regional medical centers (RMCs) involved in engagement activities should consider adapting at their sites before the national AoURP launch in May 2018. Engagement in the AoURP comprises the tasks of making potential participants aware of the AoURP, enrolling them to participate, and retaining them within the program. To develop best practices, we used the Rapid Assessment Procedure, which enabled us to combine information from several data sources, verify emerging findings through triangulation, iterate between data collection and analysis activities, and inform relevant stakeholders of emerging findings in a timely manner.These findings should be of interest not only to RMC engagement leads and staff and AoURP leadership, but also to those ...

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Engagement of African American Families in Research on Chronic Illness: A Multisystem Recruitment Approach

Cited by 36 publications

References 34 publications

Incorporating the Contextual Assessment Approach to regimens used in genetic family studies

Incorporating the Contextual Assessment Approach to regimens used in genetic family studies

Psychiatric aspects of the dialysis patient

Best Practices for Participant and Stakeholder Engagement in the All of Us Research Program

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