Ethical research with children
My attention was drawn recently to a two-year research project based in London involving children 'with speech, language and communication difficulties', intended to discover what these children need while they are at school and funded by the UK government's Department for Children, Schools and Families (DCSF). It's an area where research is sorely needed, but I was concerned by the information leaflet for the study. Parents are invited to opt out of the initial stage of the research (if we don't hear from you we will assume you are happy for your child to be involved in the research) rather than to opt in (we will not involve your child unless you tell us you are happy for us to do so).
It's only possible to opt out of something if you understand what you're being asked, but the leaflet did not, in my view, address the possible speech, language and communication difficulties that parents of these children might themselves have and which could prevent them from exercising their judgement over whether or not to be involved - in turn making it impossible for parents to consult their children about it.
I had an interesting discussion with a member of the research team who was very receptive to my concerns and told me that they had needed to take some pragmatic, but not preferred, decisions in order to get the study was to get off the ground. I was satisfied that parents would be opting in to the more detailed later stages of the research. However, while the researcher assured me that children's own permission would be sought, I did not feel that the example given paid sufficient heed to the power play that exists in all relationships between children and adults - especially those in authority - nor did it acknowledge the added problems in this regard for children with speech, language and communication difficulties. (The example given was along the lines of: 'We ask the children if they are willing to spend a little time with us to answer some questions and play a few games, and they're quite at liberty to say no.') I also suggested that children with speech, language and communication difficulties are so used to being observed and prodded - and to have no choice in the matter - that it might be difficult for them to understand that the opportunity to say no was genuine.
As I said, research in this area is sorely needed, but it's no good if the research methodology perpetuates a less-than-rigorous approach to children's involvement. I liked the researcher I spoke to, who accepted all the points I made as valid and I think will take some of what I said forwards into the study. I certainly have confidence that the research could (if heeded by government) lead to better practice for lots of children. But is that enough? Should we demand more of research funded by a government department? And should I personally take it up with the DCSF? Any views welcome.
It's only possible to opt out of something if you understand what you're being asked, but the leaflet did not, in my view, address the possible speech, language and communication difficulties that parents of these children might themselves have and which could prevent them from exercising their judgement over whether or not to be involved - in turn making it impossible for parents to consult their children about it.
I had an interesting discussion with a member of the research team who was very receptive to my concerns and told me that they had needed to take some pragmatic, but not preferred, decisions in order to get the study was to get off the ground. I was satisfied that parents would be opting in to the more detailed later stages of the research. However, while the researcher assured me that children's own permission would be sought, I did not feel that the example given paid sufficient heed to the power play that exists in all relationships between children and adults - especially those in authority - nor did it acknowledge the added problems in this regard for children with speech, language and communication difficulties. (The example given was along the lines of: 'We ask the children if they are willing to spend a little time with us to answer some questions and play a few games, and they're quite at liberty to say no.') I also suggested that children with speech, language and communication difficulties are so used to being observed and prodded - and to have no choice in the matter - that it might be difficult for them to understand that the opportunity to say no was genuine.
As I said, research in this area is sorely needed, but it's no good if the research methodology perpetuates a less-than-rigorous approach to children's involvement. I liked the researcher I spoke to, who accepted all the points I made as valid and I think will take some of what I said forwards into the study. I certainly have confidence that the research could (if heeded by government) lead to better practice for lots of children. But is that enough? Should we demand more of research funded by a government department? And should I personally take it up with the DCSF? Any views welcome.
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Replies to This Discussion
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Permalink Reply by Jill McLean on -
Hi Pat,
You're question piqued my interest because it combines my two main areas of study/work/interest: research and youth. My thinking is that anything that has to do with children should require more than passive consent - meaning it needs to be more than "if we don't hear from you we'll assume that everything is fine." The plain reality in my opinion is that there may be parents who don't even read the leaflet because: they don't have time, they are bombarded with materials regularly, the leaflet never makes it home - whatever the reason. When it comes to sensitive populations within sensitive populations, there needs to be more outreach to ensure that everyone's needs are being ethically met and that everyone is informed an comfortable with the process and how the information will be used. This may mean making an effort to call the parents personally or catch them when they pick up their child from school; yes it takes more time but that's really the nature of doing it right. Passive consent, again in my opinion, is a lazy way of catching everyone which leaves a lot of folks in the dark - these children deserve more than that.
As for the information that was sent home: parents and children need to be clear on what they are being asked to do - particularly when it has to do with sensitive matters such as those who have trouble communicating (but honestly, all it should always be clear - this is an absolutely necessary part of informed consent, and uninformed consent is not good enough). People - including the children - need to know what they are getting into before they are in the midst of the process. This means that simply saying to the children that they want to have a little talk is not enough. The process needs to be outlined in full in accessible language with all the options that go along with it (to not answer anything that they don't want to, can do so without retribution, that this is not in any way connected to their school marks or how the staff at school view them, etc. etc. etc.)
On top of that is the power dynamic that you mentioned. Children, particularly those with difficulties in communicating, learning, etc. are going to be far less apt, able and comfortable saying no to an adult/teacher/researcher asking them questions; particularly in a school setting. This is not ethical in the least and can put children at risk of traumatic experiences. I don't know the exact process that they plan on following but I think at the very least this research needs to be carried out by someone that the child is comfortable with in the setting of the child's choice that power dynamic is at least somewhat decreased.
Just my thoughts from a research standpoint for what they're worth. I realize that this research is desperately needed. Unfortunately often times research can treat human beings like objects that get to know on a need-to-know basis which removes their active subjectivity from decisions on how their life plays out - particularly common in research that focuses on children and youth because they are seen as unable to understand and also that they are seen as the ward of someone else who the decision making can be deferred to.
Please keep me posted on how things go.
Best,
jill
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Permalink Reply by Pat Gordon-Smith on -
Thanks so much for your thoughts, Jill. I agree with all the points you make, especially regarding an assumption that parents will read or even see a piece of paper - they were there in my mind when trying to work out where, if anywhere, to go on this. I have no personal involvement with the research, but the researcher seemed open to comment so it may be worth some further thought.
The impression I had was that, if this was a small-scale piece of research, involving, say, no more than five settings, the researchers would have preferred to use the kind of approach that you suggest. The problem comes because, while not a vast study, it's still pretty big (and, I assume, understaffed enough) to make it impossible for the best ethical standards to be followed. That problem has given me enough pause for thought to make it worthwhile a little investigation.
I have just one MA research project under my belt so I'm not an experienced researcher, but that study was with 3 and 4 year olds in a nursery. That's a difficult constituency in terms of obtaining the children's informed consent, not for the reasons that too many people assume regarding young children (language, cognitive development, etc), but because they are so used to being observed and to have what they say written down as part of the assessment process in early childhood education. In a good setting, the children experience this as a positive part of their interaction with adults, so the idea that they might want to ask an adult to stop talking to them or writing things down seems odd to them - almost laughable. I think that the difficulty in achieving informed consent in this instance has some similarities with the case we're discussing, and so I may see if I can investigate further. First stop, Alison Clarke (The Mosaic Approach), to see if she has any experience of adapting her excellent small-scale methodology for research with young children so it can work for larger projects.
I'll keep you posted - and please do let me know if you have anything more.
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