Your Diabetes Clinic Study – Summary of results

The findings are in people!

Good relationships between young adults with type 1 diabetes and their diabetes clinic team is associated with more regular clinic visits and more regular contacts with the diabetes clinic in between appointments. I am really excited about this finding because, although it is not mind-blowingly surprising, it provides evidence to support the developmentCV Quotes Box (just brown) of diabetes services for young adults which prioritise partnership and teamwork.

The origin of the Your Diabetes Clinic Study

So where did this study come from? The aim of the Your Diabetes Clinic Study was to gain a better understanding of young adult’s experiences in their diabetes clinic and the reasons why they did or did not go to their clinic appointments. To do this, a questionnaire was put together based on the theory of clinic attendance behaviour, which we developed in an earlier study (please see my last Study Update for more information on the development of this theory!). Using statistics, the data provided by the wonderful young adults who completed our questionnaire, through this website, were analysed to determine what parts of the theory of clinic attendance were linked to the number of clinic visits made by participants.

So many questions!!

This study looked a number of different questions related to young adult’s interactions with their diabetes clinic. For example, do young adults who have better relationships with their diabetes team attend more appointments, miss fewer appointments, and have more informal contact (for example, telephone or e-mail contact) with the clinic? We also wanted to know whether negative emotions related to diabetes experienced by some young adults played a role in their interactions with the clinic. We were also interested in the influence of factors like young adult’s daily diabetes self-management activities, satisfaction with the diabetes clinic and quality of their social support on interactions with the diabetes clinic.

Collecting the data

So after about four months of collecting data online and in diabetes clinics in Ireland, 154 young adults completed the questionnaire. I would like to extend a sincere thanks to these participants and to all of the people who took an interest in this study and shared it online. Thanks also to the diabetes service providers around Ireland who very kindly supported me to recruit young adults attending their clinics. All that was left then was to get my statistics hat on and to analyse the data with the expert support of Dr Ronan Conway.

Favourite part…the findings!

In my excitement, I started this story with the ending; relationships between young adults and diabetes service providers emerged from the analysis as an important factor when it comes to getting to those clinic appointments.  We also found that relationships play a role in the amount of informal contact, by e-mail or telephone for example, initiated by the participants.

We also found some other interesting things:

  • Participants with better relationships with service providers were more likely to feel confident in their ability to deal with their diabetes, for example feeling more able to set realistic diabetes-related goals and get support when they needed it.
  • A huge 82% of our participants made informal contact with their diabetes clinic by telephone, text message, e-mail, or calling into the clinic, at least once in the previous two years. Informal support seems really important but isn’t always an official part of diabetes services and so can be a lot of extra work for service providers and may not be accessed by all young adults.
  • Many of the other variables we measured, like distress and attitudes towards diabetes self-management, did not play a big role in helping us to understand the factors which influence young adults to visit their diabetes clinic. This tells us that more work is needed to make sure we understand the full story here.
  • We would usually assume that people who are satisfied with their healthcare are more likely to continue to go to their appointments. Our findings suggest that things are more complicated! We found that satisfaction wasn’t that important in relation to making all of your clinic appointments, but having a relationship with your diabetes team was. This finding tells me that even if there are issues with the clinic, such as long waiting times and less than swanky waiting areas, a good relationship can overcome these barriers and increase the likelihood of young adults making their appointments.

So what’s next??

Although there are many difficulties in our health systems, facilitating the development of strong working relationships seems like a worthwhile priority. Our study suggests that efforts to improve relationships between young adults and service providers could take at least two possible approaches: reduce existing barriers to relationship development, such as reducing the range of staff responsible for young adult diabetes services so that young adults can become familiar with the team, and support partnership, for example by training young adults and service providers to share decision-making and problem-solving. Developing ways to increase access to informal support between appointments might also be important.

We’re working hard at the moment to publish the findings of this study so that the results will be available to people working with young adults with type 1 diabetes. I am lucky enough to be attending the World Diabetes Congress in Vancouver at the beginning of December and will give a poster presentation on this study! I could not be more excited about this!! Finally, the findings of this study will form part of a national study I am part of which aims to design new approaches to providing diabetes services to young adults with type 1 diabetes. Keep an eye on developments from this exciting work!

PS Questions or thoughts? https://www.facebook.com/yourdiabetesclinic?ref=hl or tweet @LisaHynes19

Study update!

‘It makes a difference, coming here’: Understanding clinic attendance among young adults with type 1 diabetes

Great news!!

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 problem

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.

TOCA_pp

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 take-away

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!

What’s next?

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-

Welcome to the Your Diabetes Clinic Study!

Our survey is now closed! Thanks to everyone who completed the survey, shared the link to the survey and visited our website and social media sites! Looking forward to sharing the findings right here on this website in the very near future!

Do you have type 1 diabetes? Are you aged between 18 and 30? We are recruiting young adults, between 18 and 30 years old, who have been diagnosed with type 1 diabetes to complete a questionnaire. As you can tell from the title, we are interested in your experiences of visiting a hospital-based diabetes clinic. If you have type 1 diabetes and are aged between 18 and 30, please visit the ‘What is this study about?’ section to find out more about the study and what taking part involves. You will find the link to the questionnaire in the ‘I want to complete the questionnaire’ section! Who are WE?? We are a team of health care professionals and researchers based in the National University of Ireland, Galway. For the last 3 years we have been working on this project to better understand diabetes services for young adults with type 1 diabetes, the good things, the bad things, and how services could be improved. Find out more by clicking on the ‘Who are we?’ section under the heading of this website. Seattle pic My name is Lisa and I am doing this project with the research team for my PhD in Psychology & Health in the National University of Ireland, Galway. I am training to be a health psychologist so I am fascinated by the things we do that make us healthier, and why we don’t always do them! Thank you for visiting our website and for your interest in the study! Any questions or comments about this study? Please get in contact by leaving a comment below, by using the contact details in the ‘what is this study about?’ section of the website. Find us on facebook https://www.facebook.com/yourdiabetesclinic or twitter (@LisaHynes19).