Category Archives: Being Me Study

Being Me with IBD: The role and impact of the e-advisory group

In this blog, we are looking at the role, impact and influence the young person’s e-advisory group on the Being Me with IBD study.

What is a young person’s e-advisory group?

The Being Me with IBD study has been guided throughout by an e-advisory group of ten young people. These young people are aged 15-26 year old and all have IBD, broadly reflecting the young people who have been taking part in the research study. The e-advisory group ensures we are connected to a group of young people with IBD who can directly shape the research study.

How have we recruited young people to the e-advisory group?

In the beginning stages of the study, a consultant at Alder Hey Children’s NHSFT identified two young people who agreed to join the advisory group and were extremely helpful in the early stages of the study development. We also contacted leads from local Crohn’s and Colitis UK groups to see if they may be able to identify any young people who would be interested, but this approach was not as successful. Following on from an article about our research in the Crohn’s and Colitis UK newsletter, eight young people contacted us asking how they could be involved. As we were keen to increase the number of young people in the e-advisory group this provided the perfect opportunity and finalised our group of ten young people.

How have we maintained contact with the e-advisory group?

Early in the study we asked the young people about their preferred methods of communication and they advised that this would best be done primarily through email, as this made it easier for them to contribute to discussions in a way that did not disrupt their study, work and lives. Using this method of e-engagement, rather than physical meetings, has worked well for the young people, who are geographically spread and it means they can respond when they have time around their busy lives.

How has the e-advisory group contributed to the research study?

The group have been central to all aspects of the study. They have reviewed and approved our study materials such as our information sheets to ensure they are appropriate for use with our participants, helping to ensure they have been sensitive, easy to read and presented in a friendly and inviting manner. Their input in relation to our data collection methods was particularly helpful, with them giving feedback on the length and nature of the survey and the methods used in the qualitative interviews. Their savviness with social media has been invaluable in helping us engage a wider audience and they have also advised us on the content and focus of this blog. Their focus for data analysis has so far been on identifying other chronic conditions which we could use as comparators for the quantitative data.

As we move into the dissemination stage, we have been seeking their advice on the critical messages for and design of dissemination materials. We plan to continue to work with the e-advisory group to produce outputs such as videos, posters, or leaflets that will help spread the messages from the study to other young people with IBD and to the wider public.

What have been the benefits of an e-advisory group for the research study?

The team and the study have hugely benefitted from the involvement of the e-advisory group. We feel that through their input our research study has been enhanced and is better able to reflect the lives of young people living with IBD. The group has also helped us understand more about how young people want to be involved in research and their preferred methods of communication. Their insights continue to influence us as the study draws to a close. Working with the young people has not only impacted on how we have run this study but will also how we will work in the future.

Thanks for your interest in our study

The Being Me with IBD Study Team

 

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