Making Us Count was a research programme comprising four projects based on our previous work on the Count Us In inquiry. The research programme produced a range of resources.
What’s Happening
"Whenever I try something new I’m anxious. That’s just the way I am. It’s not the way I was brought up, it’s just the way I am … I feel sick a bit, you know what I mean, and it’s just one of those things and it really annoys me, it really does."
This is how one young woman described her feelings of constant worry when she was interviewed for the What's Happening project. The project aimed to explore the views of young people with learning disabilities who are experiencing anxiety and/or depression.
The study was conducted by researchers from the Universities of Strathclyde, Glasgow and Stirling and focused on the way in which young people and their family carers identify and understand emotional difficulties. It helped a small number of young people to talk about their own experiences of mental distress, how they coped and the support they received. In addition, it explored how family carers and care staff respond to young people’s needs and how well health, social care and other services support them.
The project used photo and video diaries to facilitate communication and understanding between the researchers and the young people. Findings showed that the young people had varying degrees of insight into their own feelings and situations. However, the services they and their carers accessed were patchy and inconsistent.
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Supporting Young People with Learning Disabilities and Mental Health Needs from Minority Ethnic Groups
"There are so many problems… the girl needs 24 hour help… We [the family] have to take it in turns to look after her."
Two major issues in supporting young people with learning disabilities from minority ethnic communities are the family carer’s awareness of their child’s mental health needs and their perception of the services available.
This research project focused on the needs of young people with learning disabilities from Pakistani and Bangladeshi communities in Bradford. It explored ways of improving access to services.
The project included mapping of service use by families, and focus groups with service users and service providers to identify the barriers to accessing services and recommendations for future services. During the project one group of families was allocated a liaison worker for nine months to help them get in touch with the services they requested, whereas another group carried on without this type of support, and a comparison of service take-up, behavioural issues of the young person, and carer stress was made. Additionally, a detailed case analysis was made of ten young people with learning disabilities with behavioural/mental health concerns to gain greater insight into issues affecting the young people.
The findings of this research indicated that young people from Pakistani and Bangladeshi communities and their families experience significant problems in accessing services. These arise from lack of knowledge and awareness about what support is available, language barriers, inability or reluctance to get help, and perceptions and beliefs about caring and the role of the family. Families who had received help from the liaison worker had significantly more frequent contact with a wider range of services and with more positive outcomes than those who had not.
Mind the Gap
'I was mixed up between school and college. I wasn’t in one head – I was in both.’
These were the words of one young person who took part in Mind the Gap, an action research project that aimed to improve the emotional and mental health support for young people with learning disabilities as they move into adulthood. It was carried out by the Norah Fry Research Centre, Bristol, in partnership with those involved in service provision for people with learning disabilities in Somerset, between September 2002 and August 2004.
The project explored the views of young people and their families about the kind of emotional and mental health support they wanted, and involved them in establishing their own forms of support through action research. Based on the good practice that already exists in transition support within Somerset, the outcomes included a peer support course facilitated by young people themselves, and a course in emotional support facilitated by parents.
The Well-being Project
‘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.’
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.
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.
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