Social Participation and Quality of Life in Adults with CP
Research type
Research Study
Full title
Social Participation and Quality of Life in Adults with Cerebral Palsy
IRAS ID
329629
Contact name
Mark Linden
Contact email
Sponsor organisation
Queen's University Belfast
Duration of Study in the UK
0 years, 11 months, 29 days
Research summary
Summary of Research
Aim: This study seeks to understand how social participation and quality of life are impacted by the experience of impairment for adults with cerebral palsy (CP).Rationale: CP is a complex condition and although medically described as non-progressive, the experience of living with CP changes as an individual grows up. Previous research has focused heavily on childhood and transition from child to adult health care, but few have explored the interrelationship of social participation and quality of life with adulthood.
Research Questions:
1. What are the specific ways that disability leads to differences in disabled adults’ social participation across key domains of employment, education, leisure, housing and romantic relationships, in comparison to non-disabled people?
2. Which environmental and social factors have positive or negative impacts on the social participation and quality of life of adults with cerebral palsy in NI?
3. How do impairments and personal environments interact to shape modes of social participation and quality of life?
4. How do social participation and quality of life change from childhood, through the transitions of adolescence and into early adulthood in NI?Methods: The research will take a quantitative approach to collect cross-sectional data from an age-specific cohort of adults with CP living in Northern Ireland and further data on a control group consisting of typically developing peers of those individuals matched for location, gender and age, through the use of a survey.
Funding: The study is funded by the Department for Economy and will fulfil the requirement for the research student's PhD.
Summary of Results
This study sought to investigate the extent of participation and quality of life in adults with cerebral palsy (CP) in Northern Ireland, investigating the differences between adults with CP and non-disabled adults. Through the use of a quantitative survey, we sought to investigate how participation and quality of life are impacted by environmental and personal factors, mental and physical impairments, and how these concepts change across the lifespan. We found that adults with CP had greater difficulty in participation and lower frequency of participation compared with non-disabled adults. Adults with CP also had much lower frequency of participation in romantic relationships, and only 19.5% lived with a partner compared to 53.2% of non-disabled adults. Interestingly, adults with CP were found to have higher levels of autonomy than non-disabled adults. Quality of life was found to be lower than non-disabled adults in every domain. When considering access to the environment, adults with CP reported a need for improvement in the physical accessibility of public spaces and provision of accessible public transport. Further, adults with CP reported inadequate access to healthcare services, both in the provision of services and the physical accessibility of those services. A key unmet healthcare need was finding a healthcare professional who specialises in CP, and data from this study showed a need for doctors to listen to the views of the individual with CP. Data on mental health showed that adults with CP also had more severe levels of depression and anxiety than non-disabled adults, and lower levels of self-efficacy.REC name
HSC REC A
REC reference
23/NI/0120
Date of REC Opinion
25 Oct 2023
REC opinion
Further Information Favourable Opinion