About Down's Syndrome : Adult Sibling Survey

Researchers at the University of Warwick are looking for adults (‘adult siblings’) that have a brother or sister with a learning /developmental disability – such as Down’s syndrome – to take part in our survey study which is funded by the ESRC and Sibs.

We want to hear about adult siblings’ experiences, wellbeing, support needs, and their relationships with their brothers and sisters with learning/developmental disabilities. This research is important because understanding the needs of adult siblings will help us develop relevant support.

Adult siblings are important in the lives of their brothers and sisters with Down’s syndrome. Health improvements in recent decades mean that people with Down’s syndrome live longer lives than ever before. A question is therefore raised about who will care for and support people with Down syndrome when their parents are no longer able to? For many people with Down’s syndrome, their siblings may provide friendship, support, advocacy and/or care – this becomes increasingly important when parents are no longer able to provide primary care.

As this work is collaborative with the UK charity Sibs, this is a great opportunity for adult siblings to have their needs and experiences heard by the only UK charity whose sole purpose is to support siblings of people with disabilities.

For full information and a link to the survey, please click here.

If you have any questions about the survey, please get in touch with Nikita Hayden: N.Hayden@warwick.ac.uk / 02476150571.

The Researchers

Nikita Hayden

Nikita is a PhD student at the University of Warwick, supervised by Professor Richard Hastings. Her PhD explores the educational and psychological outcomes of children that have a sibling with an intellectual disability or autism as well as their relationships with one another. Nikita has a younger brother with autism.

Richard Hastings

Richard is a Professor at the University of Warwick and the Cerebra Chair of Family Research. He is a researcher in the field of intellectual disability and autism, with particular interests in families of both children and adults with disabilities, including siblings.

Clare Kassa

Clare is the CEO of Sibs. She has worked in the voluntary sector supporting disabled people and their families for over 25 years. Clare has an older brother with a learning disability. Clare is passionate about sibling support and ensuring that the important role siblings play in the lives of disabled people is acknowledged by service providers and policy makers.


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Twitter: @Sibs_uk

Facebook: @SibsCharity

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