The wellbeing project
There is a growing awareness that young people with profound and multiple learning disabilities suffer from depression, anxiety and stress, as do many other individuals. Because they cannot talk about their difficulties these may be overlooked by those who care for them.
This project was carried out by The White Top Research Unit, University of Dundee, to investigate how family carers and care staff identify and respond to changes in the mental and emotional well-being of these young people, using diagnostic instruments to identify psychiatric indicators, together with carer interviews. The project also explored what service support was sought by and available to family carers and care staff.
"I know it’s difficult to describe the changes in her facial expressions, because you know the changes are so subtle, but very noticeable. When she’s happy you certainly know she’s happy and she lets everybody know she’s happy, because she sings at the top of her voice. The tone changes with changes in her emotional and mental well-being, just a slight difference; it’s like the difference between somebody singing a lament and singing something happier."
The study found that the majority of the carers were able to identify specific signs that alerted them to changes in emotional and mental well-being and some of the reported symptoms were consistent with psychiatric indicators contained in standard diagnostic instruments. Furthermore, it showed that the causes and effects of changes in the emotional and mental well-being of people with a profound and multiple learning disability were no different from the causes and effects in the general population. However, carers were unable to find appropriate advice and support once changes in emotional and mental well-being had been identified.
The research findings highlighted key areas in which information and training for family carers and care staff are required. These provided the basis of a training workshop which was designed and run for family carers and care staff by parents in partnership with the White Top Research Unit and PAMIS, the voluntary agency representing individuals and parents and families of people with profound and multiple learning disabilities. The workshop is interactive and uses case studies from the research to explore sensitive and emotional areas of well-being, as well as pathways of support.