Getting information from people with learning disabilities about their health is often done through discussions with professionals and carers. The authors of this study wanted to know more about the health problems people with learning disabilities themselves reported and whether there were differences from what their carers’ reported.
They explored this by carrying out a secondary analysis of health information provided by people learning disabilities and/or matched carers as part of a health intervention randomised controlled trial using inclusive methodology. They looked at the health information of 98 participants with learning disabilities.
They found that only 68 people, less than three quarters of the participants, said they had someone to talk to about their health. 66 people reported pain (67%) and 17 (18%) said they did not tell anybody when they were in pain. 26 people (27%) said they did not take any pain relief medication.
Looking at the data from the matched carers of 59 of the participants showed that there were a similar number of health problems reported by the participants as by their carers when prompted with specific problems.
Interestingly, participants reported more headaches and allergies, but fewer weight problems than their carers.
The authors conclude that the participants in this small study reported experiencing a lot of health and mental health problems, including pain, and point out that this information is not routinely collected from adults with learning disabilities, either in research or clinical practice.
Reporting of Health Problems and Pain by Adults with An Intellectual Disability and by their Carers, Turk V et al., in Journal of Applied Research in Intellectual Disabilities, 25: 155–165.