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