About Down's Syndrome : Flourishing Lives – Bridging the translation gap between learning disability policy and practice in search of flourishing lives

Can you help with this study?

Dr Siabhainn Russell (Nuffield Department of Primary Care Health Sciences, University of Oxford) is looking for people who have Down’s syndrome (18 years plus) and family carers to join focus groups to explore and compare what good social care and support means to people who have Down’s syndrome and family carers.

Despite government policy and research about how to support people who have learning disabilities to lead good lives, this is often not happening. People lack friendships, fewer than 6% have jobs, and life expectancy is lower than average.

This study will explore how people who have learning disabilities can be supported to lead flourishing lives. Dr Russell hopes the study will help bridge the translation gap between learning disability policy and practice.

Here is how Dr Russell believes the study might lead to benefits for people who have Down’s syndrome and their families:

‘The Flourishing Live project will help people who have Down’s Syndrome and learning disabilities and their family carers to talk about their experiences of social care. Telling our researcher what they think is good about the social care they receive, what could make it better and what the most important things to include in their social care package to help them be happy and lead full and flourishing lives. A person might for example be interested in having support to take part in a particular activity, then their participation in the project will help the researchers and practitioners involved with the project formulate a guide about how social care could be delivered better to help people live flourishing lives. We will then present that guide to policy makers with the help of those with learning disabilities, including those who have  Down’s Syndrome.’

‘Siabhainn (pronounced “She-v-awe-n”)

I’ll be the person you talk to most on the Flourishing Lives project.

I like theatre, reading books, watching detective dramas, Tennis, Rugby and Formula 1. I like doing research to find out things, it’s like doing detective work. I have a support worker called William.’

Further information about the study is available here: https://www.phc.ox.ac.uk/research/social-care-research/bridging-the-gap-between-learning-disability-policy-and-practice

There is easy read information about the study at this link.

There is a Flourishing Lives blog at this link: https://flourishinglives.blog

If you have any questions and/or would like to join the study, please email Dr Russell: siabhainn.russell@phc.ox.ac.uk

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