BMJ Open has published a study that seeks to identify and describe the important aspects of life for adults with diabetes, to inform discussions of a patient reported outcome for the Swedish National Diabetes Register.
There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes.
The researchers in the ‘What is important for you?’ study conducted qualitative interviews with 29 adult diabetes patients.
The interviews found that to live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care.
The analysis resulted in the overarching theme ‘To live a good life with diabetes’ constituting the two main categories ‘How I feel and how things are going with my diabetes’ and ‘Support from diabetes care in managing diabetes’ including five different categories.
Diabetes care was described as a crucial resource in dealing with diabetes emotionally and practically. Participants wanted to be listened to and that caregivers acknowledge their experiences, knowledge and desire for shared decision-making.
Diabetes care was wanted to target individual needs with regard to access, content, timing, personal treatment, current individual situation and the emotional aspects of living with diabetes.
Support was requested in how to handle diabetes in different everyday situations and also in situations faced less regularly, such as travelling, taking part in festivities or being sick.
Continuity—being able to meet with the same professional over time—was expressed as a prerequisite for a good and open discussion.
Some participants experienced that they learnt something every time they visited the diabetes clinic. At the other end of the continuum, there were descriptions of not getting any useful information and of not understanding the information provided due to the use of professional jargon.
Participants wanted information to be tailored to individual needs, repeated to refresh memory and kept updated to keep up with changing needs and/or progress in diabetes research.
It was also expressed as important for different healthcare groups to supply consistent advice and information and not contradict each other, as this could lead to confusion and uncertainty.
Information for family and friends was also asked for, as this might make it easier for the person with diabetes and make family and friends feel more secure and less worried.
Being able to pose questions and get them answered was emphasised as another important aspect. Some described having this opportunity, but others were afraid to ask questions and sensed that there was no time for questions.
The opportunity to meet and share experiences with others who have diabetes in group-based education was called for. Those who had taken part in such programmes were very satisfied and considered them very educational and adding another dimension to diabetes care. There was a desire for them to be expanded and offered as more than one-off events.
The most central aspect was to feel good, in the present and in the future, and not to be affected too much by diabetes and the workload of its management.
Management was described as requiring a lot of knowledge of various sorts and at different levels: from theoretical and technical knowledge to more advanced knowledge and knowing how to apply and adjust it to different and new situations.
The ability to manage diabetes was described as being influenced by how the person feels and events in the person’s life and social sphere. In good times, management was easier to deal with than when facing both minor and major undermining factors.
You can read the full article here.
BMJ Open 2016;6:e010249 doi:10.1136/bmjopen-2015-010249
What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register
Maria Svedbo Engström, Janeth Leksell, Unn-Britt Johansson, Soffia Gudbjörnsdottir