People with mild to moderate intellectual disability talking about their diabetes and how they manage.

BACKGROUND: The prevalence of diabetes is relatively high in people with intellectual disability (ID). However, little is known about how people with ID experience having diabetes and how they manage the condition.
METHOD: Seventeen people with mild to moderate ID who have diabetes were interviewed. A framework on illness perceptions having an influence on diabetes self-management was used as a basis for the interviews and for the qualitative analysis.
RESULTS: Diabetes is associated with feelings of loss with regard to food intake and choices, and with being controlled. Most respondents did not feel ill. Information about diabetes for people with ID is lacking, but they do have questions. Family members with diabetes often serve as a role model. Diabetes self-management is impeded by a lack of information, motivation and support, few opportunities for learning, and by health factors, mood and living accommodation. Communication between health professionals and people with ID about diabetes rarely takes place.
CONCLUSIONS: Developing diabetes information together with the people concerned is an important step towards engagement in self-management activities. At the same time, the professional staff in living arrangements should stimulate and support the development of self-management skills in people with diabetes, by providing opportunities to learn and develop. Therefore, the professional staff also need skills and information to be able to support people with ID in building the skills and confidence they need to lead active and fulfilling lives, despite having diabetes.