Being Me with IBD:  The genesis of the study

In the second of our blogs we talk about the values underpinning the Being Me with IBD study and why we think these are important.

What we value shapes our research

The Being Me with IBD study is based on the values of participation, sensitivity, curiosity, person-centredness, respect, and collaboration. Those values shape how we have approached the study and have been fundamental in how we have taken the original idea and turned it into a study that allows us to approach young people and talk to them about friendship and loneliness.

We know that IBD is an incurable, chronic, and relapsing condition and that some young people with IBD report depressive symptoms[1]. However, most studies don’t ask young people with IBD whether they are lonely or whether their friendships have been affected by having IBD. We think that questions about how IBD affects friendships and influences feelings of loneliness are important to ask. But we know that we need to ask those questions carefully. This is where our values come into their own.

  • Participation. We worked with some young people early on in the design of the study because we wanted to be sure that the design was appropriate. We are continuing to work in participation with the young people who are members of our e-advisory group. Their contributions will help us to ensure that the findings will be useful for other young people. Participation is worthwhile, rewarding, and helps to deepen our engagement in research[2].
  • Sensitivity. Talking or thinking about friendships and loneliness can be tricky. We know that asking young people to fill in questionnaires or to talk about their experiences of friendship and loneliness can be upsetting. We’ve been as sensitive as we can be in the choice of the questionnaires we use and the way we undertake the interviews.
  • Curiosity. Researchers are inherently curious. It is what drives us to do research. We want to find answers to the questions we have. What we have discovered doing this study is that many of the young people who have participated or who have helped us as members of our e-advisory group are equally curious. Those young people want to find out more about how other people get on and whether or not their feelings are similar or different to those of other young people with IBD. While curiosity is generally seen as a good thing, we have to be careful that we don’t let curiosity carry us away!
  • Person-centredness. Talking about being person-centred is a way of saying that the young person is absolutely at the centre of what we do and how we think. Although we’re aiming to recruit up to 150 young people to the study, we know that each of them is unique with their own IBD stories to tell and with their own experiences to share. We aim to treat every young person as an individual.
  • Respect. Respect is a value that is important to us. We aim to show respect to all of the young people we meet, regardless of whether or not they decide to participate or decline to participate in the study. We’re equally respectful of the fact that there are lots of people such as clinicians, research nurses, and administrators who help the researchers to ‘get the research done’.
  • Collaboration. Collaboration is the reason that research studies work and data can be collected. Our collaborations involve working with people in each of the three research settings, with the wonderful Research Team at Crohn’s and Colitis UK who have funded the study, and a whole host of people involved in ethics, sponsorship, and governance. We also collaborate as a team, checking that things are progressing okay, talking through issues that arise, and sharing the work.

Being up front about the values that underpin a study is really important. It’s not on most research tick lists, but we’ve found that being clear about our values ensures that the Being Me with IBD Study is undertaken properly.

Thanks for your interest in our study

The Being Me with IBD Study Team

[1] van den Brink et al. (2016) https://bmjopengastro.bmj.com/content/3/1/e000071

[2] Coyne, I. & Carter, B. Being Participatory: Researching with Children and Young People. Springer. Submitted 4th September 2017. ISBN 978-3-319-71228-4

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