There is now significant evidence of under-diagnosed, inadequately managed preventable health conditions in people with learning disabilities and we have posted previously about this as well as drawing attention to a US study that found people with learning disabilities had significantly higher prevalence of diabetes than adults with no disability: 19.4% vs. 3.8%.
Despite this, there is little in the literature which looks specifically at how people with learning disabilities experience living with this chronic illness. There are some examples of approaches to supporting people using Health Action Planning approaches which have appeared on the Improving Health and Lives site, for example that used in Northamptonshire.
The authors of this study however set out to explore the experiences of people using Interpretative Phenomenological Analysis, an approach which aims to offer insights into how a person, in a given context, makes sense of a phenomenon. This small study worked with four people with learning disabilities and diabetes.
The authors found that the four participants demonstrated some knowledge of the language surrounding diabetes, but still had considerable confusion and a degree of uncertainty about their illness. They all described the impact of their illness in terms of its physical, emotional and social consequences. They also described the illness and its impact on them in the context of other health problems they experienced.
The authors conclude from their findings that people with learning disabilities and diabetes face “many challenges when perceiving and coping with their illness. Gaining insight into these challenges could help health professionals work together more effectively and provide appropriate support to people with intellectual disabilities and diabetes.”
How Do People with Intellectual Disabilities and Diabetes Experience and Perceive their Illness? Dysch, C. et al., in Journal of Applied Research in Intellectual Disabilities, 25: 39–49.