Mapeador de Dispositivos
A.1. Tabla de Mapas de Dispositivo
FACILITATOR’S NOTES
This case study invites us to consider challenges which can arise from the involvement of households in long-term
demographic surveillance systems. Such systems represent an invaluable resource for researchers conducting studies which aim to assess the effectiveness of new healthcare
interventions. In the long term, this research may also have direct benefits for household members who provide
demographic information. However, the value of this research can seem less evident to them in the short term, and, as we read in this story, some of the questions which are asked as part of surveillance activities can give rise to misplaced hopes or expectations for material help.
The aim of the story is to serve as a catalyst for discussions about consent processes in this type of research, and ways of addressing misunderstandings about the purpose of
demographic surveillance. In terms of consent, it is important to think about the way households are organized with reference to cultural norms. In the rural community portrayed here it is usual for newly married women to live with their husbands in a larger compound, which can include several houses. The owner of the compound is the father-in-law, and so he is the decision-maker when it comes to who is welcome in the compound. He must consent for the fieldworkers to visit his compound before any of the other compound members are approached. However, given the long-term nature of the demographic surveillance activities a case could be made for renewing this consent on an annual basis.
LEARNING
OBJECTIVE
To consider
challenges that can arise in the conduct of long-term research projects which involve health and demographic surveillance and do not result in short- term benefits a
KEYWORDS
Informed consent Long-term engagement Comprehension PovertyRESEARCHER-PARTICIPANT RELATIONSHIPS FACILITATOR’S NOTES They just come
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In addition, there is a need to ensure that all household members are given information about the purpose of collecting demographic data and any possible benefits. Encourage your training participants to think about ways this could be achieved, and how they would explain the purpose of the demographic surveillance system and the reasons for including questions about household assets. You could also ask participants to consider why community members may find it difficult to distinguish between research and development organizations, and how this misconception could be addressed. If you are based at a research centre which is involved in demographic surveillance, try to find out more about how this works before the session. It would also be a good idea to review the types of questions asked during fieldwork, and to think about how these might be viewed by community members.
RESEARCHER-PARTICIPANT RELATIONSHIPS HANDOUT They just come
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THEY JUST COME AND ASK
QUESTIONS:
PARTICIPANTS’ UNDERSTANDINGS OF THE PURPOSE
OF RESEARCH
'MY HUT IS GOING TO BE AMAZING!' THOUGHT JESSIE. 'I WONDER WHEN HE’LL BRING ALL THESE NEW THINGS?'
THE STORY
demographic surveillance system has been functioning in a rural area for many years. Every three months, fieldworkers visit homes and compounds in the area and ask household members about who has moved in and out, and whether there have been any births or deaths. Sometimes they ask about possessions owned by household members including bicycles, cows, televisions and thermos flasks. The homes were originally included into the system after consent had been obtained from the head of each household, who provided permission on behalf of all the other household members. Many years on the community has become very used to both the fieldworkers and the questions.
RESEARCHER-PARTICIPANT RELATIONSHIPS HANDOUT They just come
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Jessie recently moved into the area after marrying the son of one of the household heads. The next time the fieldworker visits, Jessie is the only person at home. The fieldworker, Jim, arrives by bicycle. This is the 15th household he has visited today and he has many more to visit. Jim
introduces himself briefly and starts asking Jessie his questions on behalf of the whole
household. Jessie’s husband told her something like this would happen so she is not surprised. When Jim starts asking her about number of bicycles they have, she answers none, although this isn’t true. She does not show it, but in her heart she is quite excited. She thinks that perhaps this is a non-governmental organization doing a survey of things that are needed in their household, and hopes they might bring them next time. She has heard that there are lots of NGOs operating in this area.
When Jessie’s husband gets home she tells him all about it. He tells her, no, they never bring those things. ‘Oh,’ says Jessie, ‘then why are they asking the questions?’
‘Hmm,’ says her husband. ‘I’m not sure.’
QUESTIONS
Why do you think the head of the household was the one who was asked to provide consent on behalf of all the residents?
Why do you think Jessie kept quiet, even if she was excited?
Why do you think Jim did not explain the purpose of the research to her?
Why do you think Jessie thought the fieldworker might come back with some things for the home?
What does all this tell us about how participants and researchers view each other, even though it is not really discussed?
Why do you think Jessie’s husband could not answer her questions? What does this tell us about the ethical position of the project?
What do you think the consequences of this misunderstanding could be? Is it a big deal?
How well could you answer Jessie’s question?
Do you think it is possible or desirable to keep re-consenting? What are some of the drawbacks?
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REFLECTION ON YOUR OWN EXPERIENCES
What other situations does this remind you of?
Is this different from therapeutic misconception? What are the similarities and differences?
This case study shows that it is important to understand local structures of authority, respect and consenting when doing research, but that this can also be challenging for achieving individual consent and understanding. What other examples of this do you have from your own work?
FURTHER READING
Carrel, M. and Rennie, S. (2008) Demographic and health surveillance: longitudinal ethical considerations. Bulletin of the World Health Organization 86(8), 612–616.
Mondain, N. (2010) Exploring respondents’ understanding and perceptions of demographic surveillance systems in Western Africa: methodological and ethical issues. African Population
RESEARCHER-PARTICIPANT RELATIONSHIPS FACILITATOR’S NOTES Responsibility for