Working in partnership with the community in the co-creation of knowledge
Our philosophy is that our research should be ‘with’ people with cerebral palsy rather than ‘to’, ‘about’ or ‘for’ them; to ensure that it is relevant and addresses their needs. We have brought together people with cerebral palsy, their families and carers, doctors and other healthcare professional to advise us on where to focus our research efforts and the key questions we should address. The outcomes of these Patient-Public Involvement (PPI) discussions were that research was needed in the following areas:
Understanding the symptoms of cerebral palsy and their management
- Undertake more rigorous research into understanding the symptoms of cerebral palsy and how to effectively manage them, including the control of spasticity, the startle reflex and bladder issues.
- The long-term aim is to abolish the effects of these symptoms.
Development of effective combination therapies
- Investigate current treatments and therapies for cerebral palsy, collate current thinking and research, and work collectively to combine the different approaches to develop new combination treatments and therapies that work.
Development of unobtrusive assistive devices or therapies
Children with Cerebral Palsy don’t want to feel different. Therefore:
- Develop therapies that can be incorporated into everyday life or school time, which can be implemented without the children knowing or thinking that they are doing therapy e.g. computer games or devices that look like standard games or devices, or develop video games as rehabilitation tools but ensure that they become mainstream games.
- Develop assistive devices that don’t look like assistive devices e.g. hand or leg splints that are subtle, shoes that are both comfortable and fashionable or functional electrical stimulation devices that are miniaturised or implantable.
Access to information and education on self-management of cerebral palsy
- Undertake research into the availability and accessibility of correct information and educational resources on the self-management of cerebral palsy (e.g. mental imagery, physiological interventions, support at point of diagnosis), mapping what is currently available.
- Determine how effective individual therapies or treatments are, and what difference more timely and informed knowledge would make to the lives of people with cerebral palsy and the treatment choices they make.
- Gather data and information by organising focus groups and undertaking quality of life surveys.
- Compare the availability of information and processes for the self-management of cerebral palsy with other models of healthcare self-management e.g. pain management, obesity or smoking cessation.
- Collate this knowledge and effectively disseminate it to the community including via social media, free Apps, websites, YouTube and leaflets.
Development of time and life-goal appropriate support and therapies
- Peoples goals and needs change as they go through life. Therefore:
- Develop cradle to grave support which people can buy into and out of as their requirements change.
- Develop a culture of care and support that doesn’t end when a person leaves full-time education but which facilitates independent living in adult life.
- Change attitudes and cultures so that people with cerebral palsy can go to clinicians and healthcare professionals for informed advice and guidance (e.g. effectiveness of individual therapies, their harms and benefits, when to increase, restrict or change therapies), enable them to seek second opinions or additional tests/assessments if they so wish, before they make lifestyle or treatment choices for themselves.
- Ensure uniform and co-ordinated access to information and therapies across the country.
We will continue to work in partnership with this cerebral palsy PPI group and others to shape our research as it develops and to engage the wider public with its outcomes.
We welcome new members to the group. If you are interested in joining, please contact Dave Lewis (CPRes@leeds.ac.uk)