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Table 6 Questionnaire guides used in interviews with participants and fieldworkers in RSV-study

From: When they see us, it’s like they have seen the benefits!”: experiences of study benefits negotiations in community-based studies on the Kenyan Coast

Group discussion with participants in case studies
Decision making on study participation
1 When did you join the study (RSV-study)? How did you come to know about the study?
2 Since the study involved the whole family:
how did you know about the study (who informed you about the study, when and where)
How did you make the decision to participate? (who was consulted in the family before the decision to participate was made, why were they consulted
Who was not consulted and why not? ( Promp t for communication within the family, who was involved in making the decision and why; who was not involved and why;
What contributed to your decision to join the study?
3 How long did you participate in the study for (a short while then dropped, continued to end of study etc.);
What made you participate to the end of the study?
Did any of the HH members change their decisions as the study continued? Why? How did you handle this? (probe: how they communicated about their decision)
Did any of the HH members drop out of the study and why? What did other HH members feel about this decision? What was done about the decision (e.g. accepted by the study team, talked out of decision)
4 What were some of the most difficult/challenges that you faced while participating in the study (prompt for:
Study related e.g. procedures, fears around nasal swabbing (e.g. why they were afraid of the nasal swabs), any other
Study benefits and who received these, and how they felt about them
HH challenges around continued participation e.g. time involvement, school going children,
Study team related issues e.g. frequency of FW visits
Dealing with non-participating community members.
5 How were these challenges overcome? – by who,
any consultations with the HH members,
What was the FWs/study team involvement in resolution (prompt for whether FWs took extra steps to ensure the issues/challenges were resolved) etc.
End of study discussion:
6 Now that the study has ended,
What are your views/opinions about the study?
What are your views about the FWs and the study team (i.e. how did they handle any of the questions and challenges that participants faced).
Did you face any issues with community members who were not participating? What issues, how did you handle them? Why do you think those issues arose?
Future participation in KEMRI research:
7 In future if invited to participate in a KEMRI research, would you participate, why/why not? What would you consider in making that decision?
8 Any recommendations?
Interviews with fieldworkers in the RSV-study
Changes in study since last FGD:
1 Since the last time we talked, did any of the study procedures change? Did any of your FW roles change, if yes, why and in what ways; what were the implications of such changes?
End of study discussion:
2 The HH study ended two weeks ago, what activities are you currently involved in?
3 The last time we discussed, you were not very sure that the study will progress to end. Now that it has ended:
How do you feel the study performed? Was it a success? In what ways? Did it fail in some ways?
Overall what are your views about the study?
4 The study overall has been a success in retaining participants to the end;
What contributed to such success? (Prompt for what changed in the study so it progressed to the end successfully? How study benefits contributed? How relationship with FWs and study team/researchers contributed)
What do you think was your contribution in making this study a success?
Did you have HH that withdrew from the study? How many and how did you handle this?
Did you have HH that wanted to withdraw and did not? How many and what happened till they did not withdraw?
Did you have HH that wanted to re-join the study? How did you handle this?
Overall what worked well in this study?
Overall what did not work so well, how was this addressed (e.g. FW support system etc.)
5 On reflections, what was the most challenging situation you faced in this study? How was it handled? What was your role in resolving it? What are your opinions about the way it was resolved?
6 Performance chart for each FW was introduced as the study progressed, what are your views about it? Is this something that other teams can use?
7 Now that the study has come to an end; how do you feel about the end of the study?
How do you relate with the participants?
What are your perceptions on how the participants feel about the study, and the study team?
How do non-participants feel about those who participated?
8 How was end of the study communicated, a) to you b) to the participants c) to the community; what are your views about this process of communication.
9 What are your plans for the future?
10 Any recommendations