In this blog we talk about how the Being Me with IBD study has opened and facilitated informal discussion with the parents of young people living with IBD and the importance of listening to their stories and experiences.

The Being Me with IBD study focused on exploring the experiences and perspectives of young people with the condition. So often in IBD research, the focus is on the perspectives of adults and parents, but with our study, we wanted to keep young people at the heart of everything we did. But obviously, in conducting the study, we met with, and talked to, lots of mothers and fathers.

Discussions with parents

Within the children’s hospital, most of the young people we approached about their participation in the study were accompanied by at least one of their parents/carers. Although we made it clear that the decision about participating was ultimately the young person’s, there was often an active and, sometimes, lively dialogue between the researcher, the young person, and their parent. That conversation occurred both before we gained consent or assent from the young person and after data collection was completed. Some of the conversations we’ve had with parents whose son or daughter declined to participate have been engaging and interesting.

Listening to parents’ stories

What has been clear is that many of the parents are enthusiastic and supportive of the focus of the study. Had we offered parents the opportunity of being interviewed, we would have had lots of volunteers and some very interesting data to explore. The impression we gained from the informal conversations with parents is that they are concerned about the impact IBD can have on their children’s friendships and connections and well-being. One mother explained that she thought Crohn’s was “thoroughly awful” as it had come out of the blue and devastated her daughter’s life and disrupted her schooling. Her daughter disagreed and said she was “fine” but her mother reminded that “at the time it had been bad” and her daughter then nodded and agreed that being in hospital had made her less confident.

Our focus has been on the young people, and rightly so: they are the ones dealing with the daily challenges of the condition. However, it has become obvious that IBD affects parents as well as their children. They have shared a multitude of stories about their experiences of their child’s journey with IBD ranging from the worries before diagnosis to the ongoing concerns following diagnosis, their concerns as they saw their child withdraw, and their amazement as their children achieved despite fatigue, pain, and treatment. They talked of learning to find the right way, as a parent, to support their children with whatever IBD threw at them.

Understanding the wider ripples of chronic illness

Parents’ stories bubbled out of them and we listened; not as part of the research study itself, but as people engaging and connecting with stories that needed to be told.

Maybe one of our next studies will focus on parents’ experiences. Parents play a vital role in their child’s IBD journey, and we need to better understand how they can best support their child. In addition, we need to know what support would make their journey, as parents, easier and better informed, and would give them more confidence to make decisions and suggest solutions or ways forward to their son or daughter.