‘It makes a difference, coming here’: Understanding clinic attendance among young adults with type 1 diabetes
I started a study in 2012 aiming to better understand attitudes towards, and experiences of the diabetes clinic among young adults with type 1 diabetes and service providers regularly working with them. I am proud and excited to say that the article we wrote based on this study has been accepted for publication in the journal, the British Journal of Health Psychology http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)2044-8287/earlyview. I am so grateful to the people who took part in and supported this study. This blog aims to summarise what I found and what I am now doing with that information.
The topic of my PhD project is to understand the factors that seem to promote or hinder regular attendance at scheduled clinic appointments among young adults with type 1 diabetes. The problem is that young adults seem to miss more appointments than other age groups, which is a worry because of the challenges of living with type 1 diabetes as a young adult. Although this a really important topic, very little work had been done to try to understand life for young adults with type 1 diabetes and the best way to deliver diabetes services for this group. In health psychology, when there’s a gap in the research you need to start from the very beginning. The best and most common way to do that is with a qualitative study. Qualitative research is an open and exploratory way of approaching a particular question using methods like interviewing, focus groups or analysing videos or documents.
Finding out more
In this study I interviewed 29 people to discuss their experiences in the local diabetes clinic, the strengths and weaknesses of the clinic, why they go for their appointments or not, and things they would like to change about the clinic. I didn’t interview everyone in one go. With each interview I learned a little more about the place of the diabetes clinic in the lives of young adults but I also recognised what I didn’t know. I developed new questions and each new participant sent me in another direction until I believed that I had reached a good understanding of what was going on.
The Theory of Clinic Attendance
I didn’t need to think for very long about using this quote as the title of the study, ‘It makes a difference, coming here’. It’s an excellent summary of the overall view young adults and service providers had about the clinic. For the young adults I interviewed, the clinic wasn’t perfect, they sometimes missed appointments, but it was a useful resource. You can see a summary of the theory of clinic attendance developed in this study in the picture below.
The blue and red boxes represent the features of the story of clinic attendance and the green speech bubbles are examples of each of these features.
In the interviews I learned that if something major happened in relation to their diabetes, for example they completed a structured education programme for diabetes in their clinic, young adults got the opportunity to come into contact with the diabetes team in a way that they wouldn’t have otherwise. This contact facilitated the development of a relationship with their diabetes team. This working relationship made it easier for young adults and service providers to work together for diabetes management.
Diabetes clinics can be hectic places. It can be difficult for young adults to raise any worries or questions they might have and for clinic staff to provide information and go through the necessary tests and checks. During the interviews staff described being very aware that they may not be addressing or exploring the things that are most important to the person sitting in front of them.
But when a young adult developed a working relationship with at least one member of their team, they were more likely to do things like ask questions or seek support in between appointments. It was a lot easier to do this when the young adult felt they were familiar with the team. Once channels of communication were open young adults and service providers described being able to work together to solve problems or to figure out what might work for them if some changes needed to be made.
You’ll see that I have broken clinic attendance down into ‘formal’ (scheduled clinic appointment) and ‘informal’ (contacts or visits other than scheduled appointments) contact. I think this is really important because it seemed that young adults often have contact with the diabetes clinic informally through e-mail or by dropping into the clinic without an appointment, once they were familiar with at least one member of the diabetes team.
All of this happens within the context of young adulthood, which plays a huge role in promoting or hindering regular attendance at scheduled clinic appointments. Young adults told me how moving to a new city for university, meeting new people, developing their careers, and travelling were some of the things that sometimes made it more difficult to manage their diabetes. The worry they felt when this happened as well as their unpredictable and demanding lifestyles all influenced clinic attendance, sometimes positively and sometimes not. When a young adult hadn’t become familiar with the staff, things like the way they felt about having diabetes and negative aspects of the clinic, like long waiting times, were more likely to make them avoid going to an appointment. There was a danger that by putting off one visit, it became easier to keep putting off visits in the future. Among young adults who had developed working relationships in the clinic, the benefit they experienced from visiting the clinic encouraged them to attend, even if they weren’t feeling good about their diabetes, or had other worries or distractions.
The findings of this study tell us that it is important to ensure that all young adults have the opportunity to become familiar with their diabetes team so that they can get the most out of their health service. Being familiar with the young adults they are working with is also important for service providers so that they can provide the information and support that is best for each individual, which may change over time. The aim of this study was to understand clinic attendance among young adults with type 1 diabetes so that improvements might be made to services to reduce the number of appointments being missed. Thinking about creative and efficient ways for young adults and service providers to get to know each other and be in contact between appointments may improve the quality of services and the experiences of young adults in the diabetes clinic.
A problem shared…
Finally, meeting and supporting other young adults with type 1 diabetes is a topic that came up very often in the interviews but which different people had different opinions on. I believe that peer support and mentoring is really useful but the best way to organise and manage it does not seem to be straightforward. I would love to explore this idea more and am very interested in the opinions of interested readers!
Having developed an in-depth idea of what was going on in relation to clinic attendance, I designed a questionnaire to try to test my theory of clinic attendance using numbers and statistics, or what’s called a quantitative approach. That study was conducted online through this website. At the moment I am working on the results of that study and will post a summary of the findings here very soon. I received lots of great feedback on that study! Please check out this fantastic blog by writer, Katie Doyle on her experience of taking part https://www.diabeteseducator.org/news-publications/aade-blog/aade-blog-details/aade/2015/06/04/you-and-your-diabetes-team-what’s-missing-