Living Healthy Lives (ALTHEA Study)
Exploring the effects of growing older with cerebral palsy and use of healthcare services across the life course
To understand the effects of CP (cerebral palsy) as people grow older; and understand their needs and access to health services as they age.
To improve understanding of the effects of growing older for men and women with cerebral palsy (CP), their changing healthcare needs and access to services across the life course; and provide vital insights for people with CP, health and rehabilitation professionals to identify and meet the needs of this growing patient group.
Previous research has suggested that two in 1000 live births result in CP, a condition caused by damage to the infant brain. The life expectancy of people with CP is increasing, making them the largest group of people with lifelong impairments in the UK. It is not as static condition but progresses as people get older. However currently there is little understanding of the lifelong effects of CP.
- Design and distribute an online survey to adults with CP across the UK to generate data about their experiences of ageing, access to and useage of health and rehabilitation services.
- Conduct life course interviews with adults with CP across the UK to understand:
- the effects of CP impairment over the life course
- perceptions of 'keeping healthy' and health behaviours
- barriers and facilitators to using health and rehabilitation services and changes over the life course
- Synthesis findings from the interviews and survey to produce an evidence base and recommendations to:
- promote knowledge and awareness of the effects of ageing on adults with CP,
- advocate for more effective delivery of specialist and generalist health and social care for people with CP across the life course and
- develop future research proposals that will implement and evaluate healthcare interventions using life course approaches.
- Information will be obtained through an online survey and interviews with adults with CP in the UK. The survey will be distributed to 6,000 members of Scope’s adult Online Community.
- Life course interviews will be conducted with approximately 40 individuals and will explore experiences of impairment, health and healthcare, and barriers and facilitators during different stages of life.
- Results from the survey and interviews will be synthesized using a mixed-methods matrix to map the topics discussed in the interview with the findings of the survey. The results from the matrix will be discussed with the PPI group and recommendations will be generated.
Impact and Patient Benefit
The study will make a unique contribution to health science by advancing understandings of how the CP impairment manifests for men and women across the life course. It will benefit three groups of stakeholders, in different ways, as follows:
Adults with CP and their families will have access to information about the potential effects of CP on individuals as they grow older. With this knowledge people with CP and their families can prepare for potential health decline and self-advocate for generalist and specialist ongoing health and social care interventions, including preventative care, at different points across their lives.
Scope and other members of the CP Coalition will share the new knowledge about the effects of ageing with CP with their members across the UK.
The research will be used as a resource for the organisations and UK Government Cross-Party Steering Committee to advocate for national and local changes in healthcare policies and practices so CP is recognised as a lifelong impairment and people with CP can access specialist care provision across the life course.
- Health professionals working in primary and secondary care and rehabilitation across the UK will benefit from the insights derived from this study to understand more about the holistic needs of their patients with CP across the life course, and recognise and address any barriers to accessing primary and secondary care for adults with CP.
- The findings from the Althea study will provide a platform for future complementary research and development to evaluate how health and social care practices can be improved, including evidence of what works best.
NIHR Research for Patient Benefit
Facebook PPI Advisory Group
The 6 advisory group member advise on the design of the study and production of recommendations via the closed Facebook group 'Living Healthily with Cerebral Palsy Advisory Group'.
- Karen Watson
- Richard Luke
- Dr Hannah Harveey
- Dr Claire Tregaskis
- Dr Ruth Bailey
- Dean O'Shea
Find out more about the Advisory Group members