The specific needs of pregnant women with type 1 diabetes highlighted in a project with person-centred web-based support. Article and researcher in focus: Karolina Lindén

Article: Person‐centred, web‐based support in pregnancy and early motherhood for women with Type 1 diabetes mellitus: a randomized controlled trial. Link to the article.

Researcher: Karolina Lindén

Appointment: Karolina defended her doctoral thesis in March and is currently working as an Associate Senior Lecturer.

Age: 36

Which personal resources do you use in your research? Person-centredness is an ethical approach that I apply in all my research. I am curious by nature but at the same time empathetic in my encounters with other people. As a researcher, people invite me into their lives, and I get a glimpse of their most intimate and perhaps most difficult experiences. I never forget that behind every blood glucose value or measurement variable, there is always a person with a story.

You have tested a web-based support programme in pregnant women with diabetes. Please could you briefly tell me about this research project? Together with my fellow researchers, we conducted an intervention study including women with Type 1 diabetes, stretching from early pregnancy up to six months after childbirth. Since pregnancy and childbirth are very challenging for women with diabetes, we developed a web-based support programme as part of the project, to support them and strengthen their personal capacity.

The support programme was accessible via a computer or a mobile phone and consisted of three components: the first part being specific information developed in collaboration with women with diabetes in early motherhood. A large amount of information was already available about being pregnant, giving birth and breast-feeding but it was not so relevant for this group as their condition creates different obstacles and hurdles to overcome.

The second part consisted of a web-based self-care diary where the women could report how they were feeling, their blood glucose values, and insulin doses, diet and exercise. The self-care diary could also be brought along to consultations with health care professionals. The third part was an online discussion forum where the women could exchange experiences with each other.

Could you tell me about the conclusions you made from the project? We noticed that the project participants felt better than we expected, in comparison with results from previous studies in this field. However, we could not detect any differences between those who had and those who had not used the support programme, which we believe was due to a lower than expected use of the web-support. Back in 2011, the design of the intervention was innovative but soon after there was a rapid development in other technical devices such as continuous glucose monitoring and new insulin pumps that flooded the market and became publicly available, something that was very positive of course.

How did the intervention help the women who were using the web-support programme? They were able to go in and use it to their liking. Some of them were just looking for information, others were frequent users of the diary and felt it was a great help. The women also shared their experiences, narratives and gave support to each other in the online-forum. We also noticed that many women logged in several times and read forum posts even though they did not contribute actively.

Next, we did a dose-response analysis among the heavy users of the web-support whereby we were able to observe a trend: the more they used the web-support, the better they felt. Both well-being and self-efficacy of diabetes management improved. However, these results were not statistically significant, possibly due to the low number of participants in this group.

What was person-centred in this project? To begin with, the intervention was developed according to a participatory design involving people from different backgrounds; hence, we knew these functions had been identified previously. Those who used the intervention became more autonomous, especially when it came to decision-making: an ongoing process for persons living with diabetes. Although these women were already experts in their condition, pregnancy complicated their lives since their “normal” situation with diabetes was no longer relevant. Thus, the information in the web-based support programme offered them support and they were able to support each other by sharing their narratives. They were also free to document on their own terms: as much or as little as they wanted and whenever they wanted.

Will the project result in anything specific? Yes, we have already noticed that the clinics have become aware that women with type 1 diabetes have a need for specific information and support. As an example, the Gothenburg based clinics have started up parent groups specifically for these women. The information material, although it needs revision and updating, will continue to exist. The person-centred approach is also starting to get across to the clinics. In this respect, some clinics have come further, but we keep pushing for everyone to be asked: “What do you want to know, what type of support do you need?”

Link to Karolina’s thesis.

Photographer: Cecilia Hedström.