Lack of appropriate information impedes self-management of diabetes in people with learning disabilities

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We have posted previously about the management of diabetes in people with learning disabilities, as the prevalence of diabetes is relatively high in this group. It is only relatively recently however, that researchers have begun to explore how people experience having diabetes and how they manage the condition.

This small qualitative study involved 17 people with mild to moderate learning disabilities, all of whom have diabetes. The researchers interviewed them all using a framework on illness perceptions having an influence on diabetes self-management as the basis for the questons and subsequent analysis.

From the responses, they discovered that diabetes for the people involved was associated with feelings of loss with regard to food intake and choices and with feelings of being controlled.

For most of the respondents, diabetes did not make them feel ill which added to their sense of loss. The authors also point to a lack of information available foe people with learning disabilities about diabetes, meaning that they and their supporters often found it difficult to find appropriate answers to their questions. They suggest from their findings that self-management of diabetes was impeded by a lack of information, motivation and support, few opportunities for learning, and by health factors, mood and living accommodation.

From this small study, the authors conclude that the development of diabetes information with and for people with learning disabilities could be an important first step towards improving self-management. They also recommend that professional staff supporting people in their daily lives could stimulate and support the development of self-management skills by providing opportunities to learn and develop.

People with mild to moderate intellectual disability talking about their diabetes and how they manage. Rijken C et al., in Journal of Intellectual Disability Research, 56: 351–360.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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