Tag Archives: creative methods

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: Using creative methods in a clinical setting

In this blog we focus on how the Being Me with IBD study is drawing on a range of data collection methods and techniques in line with its participatory approach and underpinned by values of person-centredness.

The quantitative approach

There are two distinct but complementary data collection phases to the Being Me with IBD study. Phase 1 is a quantitative survey using validated scales which asks the young people to numerically rate factors including friendships, loneliness, depression, anxiety, health and self-efficacy (sense of control over their lives). We understand that asking young people to complete a survey about their experiences of friendship and loneliness could be upsetting. We have aimed to be sensitive in the scales we have used and we take care to check in with the young person after they have completed the survey to make sure that they are feeling okay. When a participant hands the survey back to us we score two of the scales and if one or both of them score above a particular number, we flag this is a cause for concern about their well-being.  Any young person who triggers a flag is made aware of our concern and we talk through who they may turn to for support. We also activate a robust process with the clinical team for following this up.

The qualitative approach

The young people who complete the survey are asked if they would be interested in taking part in Phase 2, which is a qualitative interview and is arranged to take place at a subsequent appointment. The interview gives the young person an opportunity to talk about their experiences of living with IBD and about their friendships, what they value about their social connections, aspects of friendships that are difficult and how they feel having IBD has impacted on these friendships. We also discuss any future concerns they may have about their IBD (such as starting work or going to college or University) and future relationships.

Using creative approaches to support interviews

We have designed two creative approaches to assist the discussion with the process also supported by an interview guide. During the interview, the young person can draw a friendship map to highlight their friendships and connections and/or use their own (hard copy or phone-based) photographs as a basis for discussing their friendships and things that may affect or impact these. The creative approaches have been designed to give the young person as much control over the interview as possible by allowing them to choose the starting point for the conversation and help them to focus on the things that matter to them in living with IBD.

Over the first few interviews, we discovered that some young people were less interested in participating in the creative techniques while others were unable to draw a map due to being connected to an infusion pump which limited their movement.

The benefits of a flexible approach to interviewing

In this study, a significant advantage of a flexible approach has been to allow the young person to decide how they want to engage in the interview. The young people who have chosen to participate in a creative exercise have used the opportunity to lead the discussion and have been very comfortable in doing so. In these interviews, the researcher’s role has been to guide and prompt the discussion with the participant leading the direction of the conversation. Offering the chance for an interview without the additional options means that we are inclusive of those young people who prefer to steer away from the creative methods.

The use of surveys and interviews (without or without creative methods) has helped to provide richer data than using a single method and we hope it will lead to a greater insight into the young people’s lives.

Thanks for your interest in our study

The Being Me with IBD Study Team