Falling in the lives of adults with cerebral palsy: Taking action to prevent, manage, and support through the life course (FIDELIO)

This project is funded by an NIHR Programme Development Grant.

Team

Principal Investigator (PI): Dr Sonali Shah, Associate Professor of Disability and Life Course Research, School of Medicine, University of Nottingham.

Co-PI: Professor Pip Logan, Professor of Rehabilitation Research, School of Medicine, University of Nottingham.

Co-Investigators:

Professor Tony Avery, School of Primary Care, School of Medicine, University of Nottingham
Dr Neil Chadborn, Mental Health and Clinical Neurosciences, School of Medicine, University of Nottingham
Dr Jennifer Ryan, Royal College of Surgeons in Ireland
Dr Ruth Bailey, Associate Lecturer in Social Sciences and Global Studies, Open University
Mr Richard Luke, Scope UK (disability charity focusing on cerebral palsy)

Research Fellow: Dr Basharat Hussain, School of Medicine, University of Nottingham.

Background

In the UK, approximately 2.29 per 1000 live births result in cerebral palsy (CP). Adults with CP have lifelong impairments and experience approximately five times more falls than those without CP. While the original damage to the infant brain is nonprogressive, adults with CP will experience premature ageing and deterioration across musculoskeletal, functional and neurological systems.

NICE guidelines (2019) state physiotherapy and occupational therapy for adults with CP should be a high priority, yet there is a significant increase in unmet need. Falls/fear of falling restrict adults with CP's roles and responsibilities in the workplace, family and community, and can cause psychological trauma. There is evidence that falls can be reduced (Action Falls reduced falls by 43% in care home residents). It is essential we have a falls prevention programme relevant to adults with CP.

Research aim

The research aim is to understand the experiences and consequences of falling and fear of falling for adults with CP, across the life course (both ambulant and wheelchair users).

This will be used to inform a subsequent NIHR Programme Grant (PG) application to adapt the existing Action Falls intervention so it can be used to reduce falling and fear of falling and the physical, social, emotional and economic impacts this has for adults with CP, the family and the NHS.

Objectives

Understand the global evidence that exists on falls prevention and management for adults with CP and identify the gaps in research in this area.
Explore the impacts and consequences of falls and fear of falling for adults with CP across the life course (i.e. social, economic, physical and psychological); and the resources and strategies used to prevent or manage their falls.
Understand strategies and resources used by expert practitioners who provide rehabilitation to adults with CP.
Produce a film from selected interview excerpts (from objectives 2 and 3) providing snapshots of experiences of falls, causes, impacts and management strategies.
Bring together adults with CP, expert and non-expert practitioners to share findings from the empirical work, but also form focus groups to generate data about the key elements required in a falls prevention intervention for adults with CP, to be refined and tested with a future Programme Grant.

Methods

In this study we will collect information about existing falls prevention work for adults with CP and plan the development of a falls prevention intervention for adults with CP. We will do this by:

reading and learning from international work
talking with adults with CP of different ages
talking with physiotherapists, occupational therapists, psychologists, and personal trainers with an expertise in CP
producing an educational film about what works and what is challenging in helping to prevent falls in adults with CP
having a stakeholder event at the end of the project, with adults of all ages with CP and healthcare workers who do not have expertise in CP

Recruitment video

Watch the FIDELIO recruitment video on YouTube

Patient and public involvement (PPI) advisory panel

Five members of the PPI advisory panel are involved in the development of this project and will use expertise, as people with lived experience and as professionals, to ensure the work addresses the needs and views of the CP population. Members are:

Richard Luke, Information Officer for the UK disability charity Scope
Ruth Bailey, Associate Lecturer in Social Sciences at the Open University
Karen Watson, founder and lead of the online support and discussion group CPAdultUK
Hannah Harvey, Research Assistant at Birmingham City University and disability activist
Sam James, disability fitness expert and lead of InclusFit company

Patient and societal benefit

Work with Adults with CP (AwCP), their caregivers and also medical rehabilitation practitioners, community fitness instructors and existing fall prevention experts about what is needed to manage falls for AwCP.
The interventions should facilitate an interdependence between the individual, their everyday environment and relationships with resources: people, relevant mobility devices and assistive technologies.
A successful intervention would encourage muscle strengthening, address balance decline and falling issues.
A successful intervention would enable young and middle-aged adults to continue to be effective in different life roles and activities such as employment, parenting, and volunteering in their community.
A successful intervention would remove potential burden to health and social care systems, and that of their unpaid carers who may need to reduce their capacity to work in paid employment to care for the person injured through falling. All of this brings an economic and social cost to society.