Reasons for Enrollment, the Informed Consent Process, and Trust Among Low‐Income Women Participating in a Community‐Based Participatory Research Study

Kneipp, Shawn M.; Lutz, Barbara; Means, Deirdra

doi:10.1111/j.1525-1446.2009.00791.x

Cited by 32 publications

(23 citation statements)

References 18 publications

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“…These strategies include: aligning the research study goals with the goals of the host community [2,10,11]; employing research staff who are a cultural, racial and/or linguistic match to potential subjects [2,6,8,10,11,16,18,19,24]; increasing the length of the enrollment period [24,25]; increasing cultural competence and awareness among research staff [5,6,19]; and having a clear and effective informed consent process that gives a balanced description of the study purpose and risks of the research to the participant [3,6,9,20]. To overcome the novel barrier we encountered related to the complexity of the training in the ethical conduct of research, the academic staff developed an “IRB training primer” to make the purpose and content of the standardized online training more accessible.…”

Section: Discussionmentioning

confidence: 99%

Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings

et al. 2012

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BackgroundTo improve equity in access to medical research, successful strategies are needed to recruit diverse populations. Here, we examine experiences of community health center (CHC) staff who guided an informed consent process to overcome recruitment barriers in a medical record review study.MethodsWe conducted ten semi-structured interviews with CHC staff members. Interviews were audiotaped, transcribed, and structurally and thematically coded. We used NVivo, an ethnographic data management software program, to analyze themes related to recruitment challenges.ResultsCHC interviewees reported that a key challenge to recruitment included the difficult balance between institutional review board (IRB) requirements for informed consent, and conveying an appropriate level of risk to patients. CHC staff perceived that the requirements of IRB certification itself posed a barrier to allowing diverse staff to participate in recruitment efforts. A key barrier to recruitment also included the lack of updated contact information on CHC patients. CHC interviewees reported that the successes they experienced reflected an alignment between study aims and CHC goals, and trusted relationships between CHCs and staff and the patients they recruited.ConclusionsMaking IRB training more accessible to CHC-based staff, improving consent form clarity for participants, and developing processes for routinely updating patient information would greatly lower recruitment barriers for diverse populations in health services research.

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Section: Discussionmentioning

confidence: 99%

Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings

et al. 2012

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“…While there is some evidence that gender and race concordance are important to successful provider-patient relationships [23][24][25] , it is not known whether gender and race concordance is required for successful patient-coach interactions. Our Community Advisory Board insisted that we attempt to match on both race and gender.…”

Section: Discussionmentioning

confidence: 96%

Qualitative Analysis of Peer Coaches’ Experiences with Counseling African Americans About Reducing Heart Disease Risk

et al. 2011

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“…This finding is analogous to that reported by Godskesen et al [16] where they reported that “hope for cure” and “altruism” were the main motives for people to participate in phase 3 clinical cancer trials in Sweden. In our study, a number of participants were content with the realization that they will be recognised for their contribution, yet simultaneously held out hope that their contribution will also yield personal benefit [1, 7, 17]. However, it is difficult to discern which motive was primary or preceded the other.…”

Section: Discussionmentioning

confidence: 99%

Motivations for participating in a non-interventional gender-based violence survey in a low-income setting in South Africa

et al. 2017

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BackgroundQualitative study of motivations to participate in research into violence and other sensitive issues can help interpretation of findings from community based quantitative surveys. It is equally important to conduct research that may enable a deeper understanding on what motivates people to participate in GBV studies. To date, not much research has been conducted to investigate the factors that influence non-enrolment and enrolment in GBV studies from the viewpoint of the real participants. The present study sought to explore people’s reasons for participating in a non-intervention GBV community-based survey in Gauteng province, South Africa.MethodsTwenty-two qualitative in-depth interviews were conducted with adult black African men and women who had participated in a gender-based violence survey conducted in a low-income setting in South Africa.ResultsSome participants reported motives for survey participation which could be interpreted as altruistic. Their motives included a desire to contribute to advancement of knowledge and to share life experiences so that unknown others could learn from these experiences. Yet, some participants hoped their participation will result in personal benefit or that they may be helped with their socio-economic challenges. The analysis further revealed a complex relationship between altruism and self-interest motives for participating in the survey amongst some of the participants.ConclusionWe conclude that it is difficult to discern which motive was primary or preceded the other. This is because such motives are not fixed, probably multiple and owing to their fluidity, may shift in people’s minds at different times and depending on the nature of the conversation. Moreover, there may be a shift in the weight given to different motives over time.

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Reasons for Enrollment, the Informed Consent Process, and Trust Among Low‐Income Women Participating in a Community‐Based Participatory Research Study

Abstract: Although findings support previous research regarding increased likelihood of enrollment when there is concordance between enrollees' goals and study topic, the establishment of trust between potential enrollees and researchers cannot be underestimated.

Cited by 32 publications

References 18 publications

Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings

Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings

Qualitative Analysis of Peer Coaches’ Experiences with Counseling African Americans About Reducing Heart Disease Risk

Motivations for participating in a non-interventional gender-based violence survey in a low-income setting in South Africa

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