INMA (Infancy and the Environment) is a research project in which different Spanish groups participate with the objective of studying the role that environmental contaminants have during pregnancy and the earliest months of life, as well as their effects on infants’ growth and development.
Last September we interviewed the fieldwork researchers for the INMA Project in Sabadell. It wasn’t the first time we spoke about this project, as we have previously detailed some of the conclusions reached by the CREAL in Barcelona.
However, direct contact with the field researchers working with the families participating in the project gave us an overall vision of the project. This work reveals citizen participation as an essential and extremely important element of the research.
Due to this fundamental role in research, we decided to contact the families to explore what leads them to join a research project for many years; what their degree of involvement is; and what their participation consists of.
As it would be impossible to interview the hundreds of families participating in the INMA Project, we asked the fieldwork researchers to put us in contact with some of them. And that was how Inspira ended up going to visit Carolina Turrella, who started collaborating on the INMA Project when she was pregnant with her son Axel, who is now 4 years old.
Carolina was one of the 1200 women to whom the project was explained when she went to get her 12-week ultrasound at the Sant Félix CAP II in Sabadell. She told us that the project was interesting to her from the beginning: ‘I am a person who likes to know about these things and I am happy to hear about projects being done to improve children’s health. So when they explained the project to me, I thought it would be good to participate. Everything was very simple, so it didn’t require much effort on our part.’
For example, when Axel was born, she remembers that they took a sample of the umbilical cord and she had to fill in several forms. However, she can’t quite remember the specific tests that were done over the years because: ‘It didn’t entail much. We just had to go to the CAP once in a while and the girls there were cool, friendly and patient with the kids. They are also flexible and can always find a minute for you.’
When we asked her about the reactions of her family and friends when she told them that she and her son were going to participate in a research project, she remembers that: ‘There were all types of reactions. Some people said that those things are useless and only make us waste our time. However, my family really liked the idea because we are people who like to collaborate and my husband also agreed with it from the beginning. The truth is that it has never felt like a big deal.’
With respect to the tests they do, Carolina states that they have all been quite reasonable and not traumatic in the least. ‘Cutting Axel’s fingernails for example,’ she explains smiling.
Axel and his brother Iván are having an afternoon snack while we are talking to Carolina. We ask the little one if he remembers the last visit to the doctor and if he liked it. He tells us yes, that he played with wood blocks, but he got a bit tired. Carolina told me with a smile that on the last visit, they did a psychological questionnaire and recorded it on DVD. ‘You know what kids are like. They get distracted easily and then you have to insist, which is why he said he got a bit tired. Then, when his father and I watched the DVD they gave us, we thought it was great and really funny listening to the answers he gave to the questions.’
We asked Carolina what it means to her to be participating in this project. After thinking about it for a bit, she says: ‘Knowing that what we are doing can be used for something positive or an inspiration to find solutions to health problems and the results applied to make the world a better place for all children. There are so many things that damage us in cities and we probably don’t even have any idea what they are. But maybe in the future, these same things won’t hurt our children any more. To me, and I only invest a small amount of time, it is very positive since thanks to this research they may find solutions to problems or at least the inspiration to keep on trying to resolve them.’
When listening to Caroline, we think that maybe in the future her son will feel proud of having contributed in the study. ‘He isn’t aware of it now, he remembers the last time most, as if it were a game. Of course, I will explain it to him and make him understand that he participated in something good and positive from the very second he was born. If his father and I want to transmit to him that we want to help others without expecting anything in return, this is a way of showing him through our example.’
Carolina feels well treated by the CREAL, the research group with which she is participating in the INMA Project. ‘We receive a bulletin with the results of the studies and tests they have done. I get the feeling that they are doing things, that they are working and moving forward, which is why I have never considered quitting. I understand that research is long term. But right now it is a positive experience.’
Carolina and her family represent these thousands of anonymous citizens who every day, without prejudices or scepticisms and without expecting anything in return, participate in projects through which we are building a fairer and more prepared society that lets us live better and more safely. Maybe they are not aware of the scope of their generosity, but here at Inspira today, we would like to give them the recognition they deserve and thank them for the fact that one day they decided to take the leap and become citizens that, through their legacy, contribute to building a better world for everybody and for the future generations.
What can I do? We send you a few suggestions:
- Transmit the importance of researchers’ work to future generations.
- Participate in surveys and studies that help improve society.