People with mild to moderate intellectual disability talking about their diabetes and how they manage.
Adults with mild-moderate ID want diabetes info co-created with them and need staff coaching to practice self-management skills daily.
01Research in Context
What this study did
Researchers sat down with adults who have mild to moderate intellectual disability and diabetes.
They asked open questions about daily life, food rules, and how staff help or hinder care.
Each person told their own story; no tests or treatments were given.
What they found
People felt real grief over favorite foods they had to give up.
They said diabetes leaflets were too hard and wanted info made with them, not for them.
Most needed staff to walk through blood checks and snacks again and again before they could do it alone.
How this fits with other research
Corby et al. (2015) looked at 28 similar interview studies and agree: people with ID can speak for themselves if we ask the right way.
Emerson et al. (2007) counted Irish adults with ID and saw most are overweight; Griffith et al. (2012) now show the feelings behind those numbers.
Beaulieu et al. (2013) measured diets and found poor scores; the new study explains why change hurts.
Wilkinson et al. (2012) found family doctors also want hands-on practice, showing both sides need real-life training, not lectures.
Why it matters
You can turn these stories into better teaching. Co-write a one-page picture guide with your client, not for them. Practice one small skill, like choosing a low-sugar snack, during everyday routines until they lead the step. Staff rehearsal is the bridge between knowing and doing.
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02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2011.01472.x