Improving medical and social care for transitioning adolescents with cerebral palsy

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Centre for Technology Innovation and Engagement

Dr Joana Pereira is lecturer in the Strategy and Organisation Group at Leeds University Business School. Joana is interested in collective, democratic, decentralised organisations that, based on crowds or communities, are able to engage in production and innovation activities.

overlapping hands of several people

In medical rehabilitation and the delivery of social care for those with cerebral palsy (CP), much of the focus has been on either children or adults. A major challenge and chasm exists in the provision and management of medical and social care when an individual transitions from adolescence to adulthood. This transitioning not only refers to age but also to physical, psychological and social changes. Transitioning opens up challenges and cracks in the medical and social care ecosystems and their ability to adequately transition care in a way that reinforces a system-wide approach to the treatment and care of people with CP.

While medical care is core to the quality of life for people with CP, a community and stakeholder-wide approach is needed that covers a range of areas central to the well-being of a person with CP. This represents a network of professional and non-professional support ranging from medical, family, physiotherapy, speech and occupational therapies, social care, schooling and university, as well as active engagement and participation in work, arts, sports and recreation, leisure, and tourism.

A research project led by academics at Leeds University Business School, alongside colleagues from the University of Leeds Faculty of Medicine and Health and Durham University Business School, looks to identify a broader, community-wide approach to various aspects of the treatment and care for people with CP.

Workshop: Cerebral palsy community co-creation

On Wednesday 6 November (10:00 - 16:00) and Thursday 7 November (13:30 - 16:00) at Leeds University Business School, we will be conducting a workshop to focus on exactly this.

The workshop, held over two days, aims to bring together a representative sample of professionals and non-professionals involved in the life of people with CP. Our goal is to gain an initial understanding of the main barriers and problems in the provision of social and medical care to people with CP during their transition.   

Who can attend the workshop?

If you are a young adult with CP, a formal or informal caregiver, researcher, scientist, medical devices company, or community leader, and you want to be part of this research community, you can find out more and register on the workshop webpage.

The research project has been reviewed by the University Research Ethics Committee, University of Leeds. Ethical Review Reference Number: AREA 18-153.

For further information please contact project lead Dr Joana Pereira.

We would like to thank Leeds University Business School Challenge Fund for their support. 

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The views expressed in this article are those of the author and may not reflect the views of Leeds University business school or the University of Leeds.