News
31-10-2011

The information needs on diabetes of people with an intellectual disability

For people with an intellectual disability diabetes means the same as for anyone else. However, in diabetes selfmanagement they are more dependent on the support of a professional caregiver or a member of the family. So far, no customized information exists. These findings were recently published by researchers at NIVEL and the university hospital UMC St Radboud in the Journal of Intellectual Disability Research.



Diabetes occurs twice as often in people with an intellectual disability. The treatment of diabetes consists mainly of selfmanagement. People with diabetes need to measure their blood sugar levels, watch their medication, inject insuline, adapt their eating pattern and learn to cope with their disease. Mostly, people with an intellectual disability cannot do this entirely on their own. They are supported by a professional caregiver in the community housing or by a member of the family.

Diabetes awareness
“We did not know how people with an intellectual disability experience their diabetes and how they handle it”, says NIVEL-researcher Mieke Cardol. “Clearly, they are aware of their diabetes, but they do not feel ill. They handle it quite differently. The consequences in daily life are the main burden, like feelings of loss related to food intake and choices, just the same as with people without intellectual disability. But the large difference is that these people are more dependent on support, for example for information on diabetes, building skills to selfmanage and on learning how to cope with it.”

Dilemma
The main dilemma for caregivers is that they want to provide person-centered care but are hindered by a conflict between protecting a client’s health and at the same time respecting autonomy, states Cardol. “For example, when a person is not willing to stick to his diet. Do you go with the person’s wishes? Caregivers often have discussions about this with the residents as well as among themselves. The caregivers could profit from more extensive training. For example, it is important that they not only learn how to inject insuline, but they also need skills and information to be able to support people with intellectual disability in building self-management skills.”

Information material
It is striking that no customized information material on diabetes exists for people with an intellectual disability. Cardol: “People with an intellectual disability also have questions like: can you get old with it? How do you explain to people who are too much interfering with you that you can eat the occasional sweet or cake? Therefore, informative material on this should be developed in cooperation with them. As yet, often family members with diabetes are the role models. They also can comfort them in difficult times, after all, they know how it is.”

Research
For this study 17 people with an intellectual disability and diabetes, 13 professional caregivers and 9 close relatives have been interviewed. Aim was to get insight in how people with an intellectual disability, their care givers and close relatives experience diabetes an how they handle it.

Subsidized by the Dutch Diabetes Research Foundation

Cooperation partner: UMC St Radboud