Some children and young people experience hyperkinetic movement disorder (they experience extra uncontrollable movements that worsen when they try to do things), which can be very frustrating and create significant limitations to their life.

Among other conditions, Cerebral Palsy is the most common cause for such extra movements. It is a life-long condition that affects movement and posture and affects 17 million people globally.

There is a lack of consensus on the most relevant outcome measure for these children and their families. Work is therefore needed to understand “what matters most” to children and parents/carers, to direct the goals of interventions in practice and research.

A study, funded by the Barts Charity, will be the first to work with children, families, and clinicians to review the evidence and identify what family-focused outcomes should be prioritised for practice and research. This will be done via family interviews and international online surveys with professionals.

The study has been co-designed with children and parents; it involves creative methods and people with lived experience as paid members of the team to support completion of interviews with families and analysis following a bespoke training package and ongoing support.

As Bengali is the second most spoken language for families attending services in East London, Occupational Therapists from Bengali backgrounds who are working there will be trained to support recruitment, acting as translators for non-English speaking families.

European and international networks of the team (including the European Rare Reference Network) will raise awareness of the study and support recruitment with professionals.

The study team are Dr Katherine Knighting (Research Fellow, Edge Hill University), Dr Hortensia Gimeno (Barts/Queen Mary University of London), Dr Ruth Dobson (Queen Mary) and Dr Louise Hartley (Barts Health NHS Trust).

The study will run from Wednesday 1 May for 18 months and will feed into a larger programme of work.

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