Community sensitization and decision‐making for trial participation: A mixed‐methods study from The Gambia

Dierickx, Susan; O’Neill, Sarah; Gryseels, Charlotte; Anyango, Edna Immaculate; Bannister-Tyrrell, Melanie; Okebe, Joseph; Mwesigwa, Julia; Jaiteh, Fatou; Gerrets, René; Ravinetto, Raffaella; D’Alessandro, Umberto; Grietens, Koen Peeters

doi:10.1111/dewb.12160

Cited by 25 publications

(26 citation statements)

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“…Several large vaccine trials have recently recruited children through the Faji Kunda EPI clinic, which have included health, hygiene and nutritional education as part of community sensitization. One study from The Gambia has shown that such activities effectively disseminate information throughout the community [40] , while others have shown that community social networks are important to knowledge, particularly when access to external information is limited [41] . Furthermore, educational women’s groups can significantly improve health outcomes in low-income settings [42] , [43] .…”

Section: Discussionmentioning

confidence: 99%

Acceptability of intranasal live attenuated influenza vaccine, influenza knowledge and vaccine intent in The Gambia

Armitage

Camara

Bah

et al. 2018

Vaccine

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Section: Discussionmentioning

confidence: 99%

Acceptability of intranasal live attenuated influenza vaccine, influenza knowledge and vaccine intent in The Gambia

Armitage

Camara

Bah

et al. 2018

Vaccine

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“…Researchers have noted that rumors about blood and other medical procedures can reduce trial recruitment and retention [14,17,18]. Formal and informal information about studies both shape perceptions of research and decisionmaking processes for joining a study [19]. These findings highlight the importance of acknowledging the context beyond the consent session itself when trying to understand what consent means to potential participants, research staff and ethics committee members.…”

Section: Introductionmentioning

confidence: 99%

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

Nuil

Nguyen

et al. 2020

BMC Med Ethics

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Background: Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. Methods: We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. Results: In our findings, we describe three interrelated themes related to the consent process: (1) words and regulation; (2) reimbursement, suspicions, and joining; and (3) responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu (Eng.: research) and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants' choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Conclusion: Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants' decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust.

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“…This may be due to less participation of people in the committee meetings which leads to their lack of knowledge on the workings of committee and in return makes them less interested for future participation. (15) This vicious cycle is hampering the participation of members in VHNSCs.…”

Section: Discussionmentioning

confidence: 99%

Social Accountability and community participation in Village Health Nutrition and Sanitation committees in Uttar Pradesh

Bathula¹,

Sripada

Choudhury

2020

Indian J Community Health

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Background: A First step towards community involvement is Participation. The government of India under its flagship program, the National Health Mission, advocates and actively encourages community participation and has setup Village Health Nutrition and Sanitation Committees (VHNSCs) at village level. Aim & Objective: The objective of this paper is to examine “The Level of Community Participation in the Village Health Sanitation committees” in the state of Uttar Pradesh. Methods and Material: A cross-sectional mix method study was undertaken in 3 districts, covering 15 villages, in Uttar Pradesh between August to October 2019. The quantitative component included a pre-tested semi structured questionnaire. Further, Focused group discussion (FGDs) and key informant in-depth interview were undertaken for more information. Informed consent was collected from all the participants. The quantitative data was analyzed using SPSS 21.0 while the qualitative data was analyzed manually, based on themes. Results: The average size of the household was 5, 65% respondents were educated, 88% were Hindus, 47% were from other backward class and 50% had below poverty line cards. In the year 2019, 7% of the respondents participated in the Gram Sabha and 5% in village health nutrition and sanitation committee meetings. Statistically significant variations were noticed where less than 20% of the schedule castes and schedule tribes had lower participation than other castes in any of the village level committees. Lack of time was one the key reasons cited for non-participation. Conclusions: To ensure adequate participation from all castes it is important to schedule meetings at times convenient may encourage more community participation.

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Community sensitization and decision‐making for trial participation: A mixed‐methods study from The Gambia

Cited by 25 publications

References 0 publications

Acceptability of intranasal live attenuated influenza vaccine, influenza knowledge and vaccine intent in The Gambia

Acceptability of intranasal live attenuated influenza vaccine, influenza knowledge and vaccine intent in The Gambia

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

Social Accountability and community participation in Village Health Nutrition and Sanitation committees in Uttar Pradesh

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