People with ID moving under Transforming Care
Research type
Research Study
Full title
How people with Intellectual Disabilities experience transitions under the Transforming Care Programme: a grounded theory study.
IRAS ID
200695
Contact name
Annabel Head
Contact email
Duration of Study in the UK
1 years, 7 months, 26 days
Research summary
Research Summary:
In 2011 a BBC Panorama documentary exposed systematic abuse of people with Intellectual Disabilities (ID) in a privately run care home through the use of undercover filming of the staff. Following this incident, the Department of Health in England launched investigations into how this situation had been able to happen. They reported that too many people with ID were staying in ATUs or hospitals for too long, without adequate assessment or treatment, and many people were in fact living in these residences. The government announced the Transforming Care programme to support people to move out of hospital into community placements with personalised packages of support.
To date there has been no published research which explores people with ID’s experiences of transitioning as part of the Transforming Care scheme. The proposed study aims to interview people who have moved or are in the process of moving under the scheme, as well as gathering further data from people who know them well such as their carers or family. The data gathered will be analysed using a grounded theory approach, which aims to develop a theoretical model of understanding, which is grounded in data about the subject. The project hopes to make recommendations which can be used to support people through transitions.
Lay Summary -
Transforming Care is a plan by the government to help people with learning disabilities move out of mental health hospitals. It helps them to live in their own home rather than living in hospital. We wanted to hear the stories of people who have moved out of hospital to find out more about their lives now.
We interviewed 22 people with learning disabilities who had moved out of hospital and lived in their own home for at least six months. We talked to them twice and spoke about their lives, what they find helpful or difficult and what it was like to move out of hospital. After about one year, we spoke to 17 people again to find out what had changed over time. Some people chose a key support person to take part in some of their interviews too.
People’s lives were better since leaving hospital and they would do anything to stay out of hospital. There are four key foundations that people needed to build and maintain with their support team to help them to live their best lives:
1. Feeling safe in my relationships
2. Belonging and keeping busy
3. Making my own choices
4. Feeling happy with who I am
Most people we spoke to built their foundations together with their support team around them.We have also produced an animation video about our research, which is being shared widely. Our next steps are to develop a free resource to help people live in their own homes, for people with learning disabilities, families and health and social care professionals to use. Our aim is that using this resource will make it less likely that people will need to spend time in hospital and will help people to lead happier lives.
REC name
London - Hampstead Research Ethics Committee
REC reference
16/LO/0816
Date of REC Opinion
6 Jun 2016
REC opinion
Further Information Favourable Opinion