Research Approach

BRI's Approach
Research is a collaborative enterprise. Participants in the enterprise include the research subjects, the research staff, the community, the funders and the scientists. As a community-based research institute, the Boyne Research Institute has made it a practice to listen to the community, to engage the community and to respond to its suggestions. For instance, the School Leavers Cohort Study arose as a suggestion from one of the student participants in the first Summer Students Programme in 1993. Another example: the folic acid studies came about because BRI staff wanted to give something back to the relatives who had participated so willingly in the interview studies. Our research subjects have also participated in the Summer Student Programme, on the Ethics Board and in many other ways. The Boyne Research Institute acknowledges and is grateful for their wisdom.

Why do people participate in research projects?
An elderly lady said that she was glad to help since it gave her an opportunity to talk about her dead baby and maybe to help others in the future.

One woman was more than delighted to help (in the sibling study). She said she remembered 10 years ago when the study (Phase I) started and the effect it had on her parents. Only then did her mother speak of the birth and death of her daughter with spina bifida, her fear for subsequent pregnancies, her sense of guilt, of loss and of shame, her lack of knowledge and understanding at what had happened. In fact, the daughter said that the pain and isolation her mother had carried was only released when the subject of spina bifida was examined and discussed with the study team but, more importantly, it then became a topic of conversation with family and friends. This woman, now in her forties, said that the study was like a huge release for her parents, therefore she and her siblings will always be glad to help the study in any way.