I encountered this situation in one of the studies, and wondered whether others have experienced it. In informed consent, and throughout various consenting and community engagement processes, participants in a community based study were informed of voluntary nature of participation, as well as all the other information given during consenting. In the course of the study, a few participants who had consented, participated inconsistently i.e. they chose to participate in some study procedures and not in others, other times they dodged researchers despite making appointments with them. When asked if they would like to withdraw, they refused to do so. What should researchers do if/when faced with this situation? Do researchers in other settings/contexts face similar/different situations? What are the implications for valid informed consent?
¿Qué deben hacer los investigadores si se enfrentan a esta situación? En una investigación los datos son totalmente válidos a partes iguales, no se puede omitir a unos sí ya otros no. toda investigación tiene que tener un aval de confiabilidad en su aplicación equitativa.
¿Los investigadores de otros entornos / contextos se enfrentan a situaciones similares / diferentes? como investigadores con experiencia en la materia. debemos de tener la agilidad y la destreza para mediar éste tipo de incidencias.
¿Cuáles son las implicaciones para el consentimiento informado válido? don se maneja un cuestionario muy minucioso y desarrollado de los puntos fundamentales de los que forman la investigación
As you say Dorcas, it must be really frustrating when participants change their minds about participating in research and don't turn up to a appointment that they made. But I'm not sure what researchers can do about it in practice. The trouble is that there could be lots of different reasons, I suppose. I agree with Susi that it does seem strange that someone who has previously said yes but has run away when the researchers come should subsequently say that they don't want to withdraw. COuld it be that this is all part of the same phenomenon i.e. that they don't want to participate but don't find it easy or possible to say no to the researcher's face. I think it is important to be aware of the fact that people often don't find it easy to say no to people in authority - and would rather use avoidance tactics. I think in the end you have to respect this even if it is frustrating.
I think this issue of silent refusers is really interesting i.e. people who 'consent' to research participation when asked - perhaps because they feel they have no choice or perhaps because saying 'no' is something that is not seen as polite but then find other ways of avoiding participation. For researchers this can be frustrating, I expect, because they don't know whether these people are keen to be involved but can't because of other considerations e.g. transport, work or other family commitments, or whether they really didn't want to consent in the first place. One way of capturing this problem might be in relation to the question of 'when does yes mean yes and no mean no?' There is definitely a really interesting research project in this (the problem will be knowing whether people are really consenting or not :-)). You might be interested in looking at a paper written by Julia O'Connell Davidson in the journal 'History of the Human Sciences' called 'If no means no, does yes mean yes? Consenting to research intimacies' History of Human Sciences 2008 21:49 p 49-67 In this paper the author reflects on her own research in the United Kingdom with prostitutes and asks some interesting questions closely related to the issue you raise in your posting here Dorcas.
Hi,Jantina and Susi,
surprise ,surprise, yes its me.I only came to know today about this and when i read you experiences it was 'de javu'regarding this 'silent refusal'---i came across P-Rs telling me in the interviews that the patients would delay the consent process for so long hoping that the researcher would 'forget' about it.The patients did not outrightly say 'no we do not want to be in the trial'-it may be that they did not want to offend the P-R.(does that make sense?)
Hi Susi and Dorkas,
definitely a very interesting phenomenon, and one that calls out for some good qualitative sociological research. Undoubtely there are solid reasons for a) not refusing participation (could this be perceived as offensive? Or may there be other reasons, such as expected benefits of participation?) and b) refusing to participate in (certain aspects of) the research project. I wonder whether literature on treatment adherence could offer some guidance here? Also, some sociological literature deals with the phenomenon of 'silent sabotage' in industrial settings - i.e. when workers in a factory do not have sufficient power to protest overtly, and do so covertly. I can look up some literature on this topic, if that would be helpful - not sure whether there are any overlaps though.
About your question about what researchers should do in these cases (other than finding out why this happens): I think the primary task of researchers is to carry out good research. In this case, their ability to carry out good research is endangered, and in my view researchers should consider dropping these participants eventually. But not until they have made some effort to understand why this happens. They may find that there are relatively straightforward solutions to the problem - e.g. small changes in the protocol.
This sounds very interesting. I have come across participants who have silently withdrawn (i.e. not attended appointment with researchers that they'd made) but not ones who've then said they wished to continue to participate in research. Do you think the participants didn't wish to explicitly withdraw because they wanted to continue to receive the benefits of research? Or perhaps because it would be seen as discourteous?
I wonder did some of these participants have to be dropped from the research because of partial compliance with the protocol?