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.
I wonder what kind of information was found to be needed that wasn’t already available? For example, EasyHealth have a range of leaflets on diabetes (see for example http://www.easyhealth.org.uk/sites/default/files/Diabetes%20-%20EH.pdf ) and Diabetes UK made a DVD for people with learning disabilities (http://www.diabetes.org.uk/About_us/News_Landing_Page/Diabetes-UK-launches-DVD-to-help-people-with-learning-disabilities/ ).
Do we really need more information, or do we need better awareness of what’s already available?
Alison
Hi Alison,
thanks for your comment. i should have made clearer that this study was carried out by researchers in the Netherlands who may not have had access to the leaflets you mention. However, the point is very well made that better dissemination of the excellent resources that exist is crucial if people are to benefit from the work that has been done. john
Hi there are similar studies carried out but again from other countries,
Dsych, C., Cheung Chung, M., & Fox, J. (2012) How Do People with Intellectual Disabilities and Diabetes Experience and Perceive their Illness. Journal of Applied Research in Intellectual Disabilities. 25, pp.39-49.
Hale, L., Trip, H., Whitehead, L. & Conder, J. (2011) Self-Management Abilities of Diabetes in People with an Intellectual Disability Living in New Zealand. Journal of Policy and Practice in Intellectual Disabilities.8, 4. pp. 223-230.
Lennox, N., Edie, G., Taylor, M., Rey-Conde, T. & McPhee, J. (2009) Diabetes, To the Point: Designing a website about diabetes for adults with intellectual disability and carers. Development Article. Technology and Disability. 21, pp. 11-18.
Rey-Conde, T (2006) Living with Diabetes and an Intellectual Disability. [Online] Available from: http://espace.library.uq.edu.au/eserv/UQ:8118/How_Do_They_Mana.pdf.
And yes we do need to look at how we provide information and education to people with learning disabilities. Using information already available is good practice, but some individuals will need tailored educational materials, e.g. to access capacity etc. This can be done by educating the population directly, their family and carers (could attend the expert programmes on behalf of them) and the professionals. Explain and transfer our skills and expertise in reducing barriers and informing how to achieve reasonable adjustments. And thats just the start !
Sharon
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Hi, there are a few other studies also undertaken in countries abroad, saying the same actually. However, all done with people with a mild learning disability. They were considering the educational needs and ability to self-manage, were the people ‘allowed’ and ‘encouraged to self-manage? Not always!
there is a study commencing in September in Ulster, can’t remember the name, he’ll be conducting a 3 yr study including 280? people with learning disabilities, using an adapted version of the educational programme DESMOND. Look and see !
Sharon
Hi Sharon, thanks for your comment. We have posted about a couple of the studies you mention. I think that that the passive provision of information, even if in easier to read format, is only a foundation. As you rightly point out, this is as much about the culture of support and the attitude of supporters and friends as it is about the nature of the information resource. john
I’ve just rediscovered this while tidying my inbox. I feel very strongly that diabetes awareness is required. We don’t have much data on this, but anecdotally many people with learning disabilities don’t recognise the symptoms, and require pretty drastic treatment when it is discovered. I’ve been trying to find funding for a pilot study but – guess what – funders say this is NHS responsibility, but NHS has many higher priorities at present
Jan
Hi Jan, Thanks for your comment.
Interestingly, there is a new health technology assessment project about to get underway looking at Managing with Learning Disability and Diabetes being run from the University of Leeds looking at developing a checklist for staff to help identify people with diabetes and learning disabilities as well a looking at diabetes management approaches in West Yorkshire
In terms of accessible information however, the project hopes to develop a self-management manual and test this in a randomised trial of treatment as usual versus supported self-management.
You can read more at http://www.hta.ac.uk/2855
Would be interested to hear what you think
John