Involving people with lived experience when setting cerebral palsy research priorities: A scoping review.
Evonne Younan, Sarah McIntyre, Natasha Garrity and 4 others
PMID 39861941WHAT IT FOUND
Research priorities for cerebral palsy are dominated by intervention questions, but current evidence comes from just five studies in high-income countries.
People with CP were a minority of participants, and their direct involvement as research partners was inconsistent.
Key findings
01Only five studies involving people with lived experience were identified globally, all conducted in high-income countries (USA, Australia).
02People with CP made up only 12% of participants, while parents/caregivers made up 31% and other stakeholders 57%.
03The most common research priority category was 'optimal intervention' (61%), followed by 'community participation and quality of life' (30%).
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
Only five studies were included, all from high-income countries, limiting global applicability. Grey literature searching is non-systematic, so relevant priority-setting activities may have been missed. Many studies did not report key participant characteristics like sex, intellectual impairment, or cultural background. People with CP were a small minority of participants (12%), so priorities may reflect caregiver or professional views more than patient experience.
Declared interests
The study was funded by the Cerebral Palsy Alliance. The authors declared no other conflicts of interest.
The easy way to misread this
Do not interpret these priorities as the global voice of people with CP. The evidence comes from five studies in two countries, where people with CP made up only 12% of participants, meaning the priorities largely reflect the views of caregivers and professionals in high-income settings.