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How People with Learning Disabilities can Make Positive Moves from Hospital to Home
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Making Positive Moves is a research project that has heard directly from people with learning disabilities about their experiences of moving out of mental health hospitals and into their own homes.
This research aims to provide insight into the lives and support needs of people with learning disabilities when they have moved from NHS sites into their own home under the Transforming Care programme.
The study was developed after the team completed a small piece of research into the experiences of people with learning disabilities moving out of hospital. The team described their original piece of research as ‘the moving process’ and this current study as ‘the living process’.
In the current ‘living process’ study the Making Positive Moves team talked to people with learning disabilities from across England who have moved out of assessment and treatment units, psychiatric or mental health hospitals and forensic units, and who have lived in their own homes for at least six months.
Researchers have analysed the lived experiences of those going through the process of creating a new life for themselves, sometimes following years in hospital. Grounded Theory, a qualitative research methodology, is being to understand people’s experiences.
The study, funded by the National Institute for Health and Care Research (NIHR), has been conducted by a small team of researchers and psychologists working to hear voices not often present in care delivery.
Key Findings and Themes
Researchers have finished collating data for the study and are now in the final stages of data analysis.
Due to the longitudinal nature of the study, which began in 2020, they have been able to learn:
- What people with learning disabilities need when they move from hospital to living in their own home
- What helps people to stay living in their homes
- What can make it more difficult for people to stay living in their homes
- What makes readmission more likely
They are currently investigating other variables that create a good life for people with learning disabilities in their own home and within their wider communities.
The impact of changes over time will also be analysed, for example where changes in staff and support packages have impacted the process of moving.
What Makes a Positive Move?
In the first Making Positive Moves study participants reported that hospital life can be restrictive, with people often feeling reduced to a limited range of labels and behaviours which may be seen as either ‘good’ or ‘bad’.
In contrast, when living in their own homes, people found that they had an opportunity to be different and to widen out their identity, leading them to view themselves more positively. They were also more likely to understand their behaviour as a reflection of how they were feeling rather than who they are.
The team are still analysing the data from the current ‘living process’ study but preliminary data has shown that factors which help people with learning disabilities settle into life after hospital centre around relationships and the connections they have with other people.
This includes the relationship between people and their support workers, who are instrumental in providing both practical and emotional support after hospital.
Good support means that people with learning disabilities recently discharged from hospital feel better able to cope with life in their own homes, more able to overcome fears and challenges, and are less likely to be readmitted to hospital.
Next Steps
Making Positive Moves researchers are finalising the data analysis and working hard to ensure they have good routes to sharing the findings nationally.
The team are working with NHS England and local transformation networks. Stakeholder engagement work is ongoing to determine how people with learning disabilities, families and carers, advocacy groups and networks, commissioners and social care and health workers may benefit from the study.
It could be used in training programmes, interactive websites, in videos and accessible reports. It may also serve as a blueprint for care providers.
A conference will be taking place in early 2024 to present the study’s findings in full to interested parties.
For more information, please visit the Making Positive Moves website and blog, follow them on X (formally Twitter) and Instagram.
Email hello@makingpositivemoves.org for further details, to join the mailing list and to book your place at the Making Positive Moves conference.
