Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians.
Julia E Hanes, Oksana Hlyva, Peter Rosenbaum and 4 others
PMID 31297831WHAT IT FOUND
Young adults with cerebral palsy described pain, fatigue and anxiety, and said childhood services had ended.
Participation in work, education and relationships mattered more to identity than motor goals, while inaccessible environments and stigma limited it.
Key findings
01Pain, fatigue and anxiety were reported in daily life, and participants described difficulty accessing adult healthcare services that understood CP.
02Participants introduced themselves by activities such as work, school and sport rather than diagnosis, and only a few tied their goals to CP.
03Lack of physical accessibility was a significant barrier to participation, especially among wheelchair users.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
Only 16 participants were interviewed once, so the themes cannot be generalized. Focus groups may have shaped what people said, especially on stigmatizing topics. The interview guide was not formally validated. People who could not take part in English focus groups or answer open-ended questions were excluded. The sample did not show whether all young adults with CP share these experiences.
The easy way to misread this
Do not read these themes as evidence that any intervention works. They come from 16 participants at one point in time, and the paper states people with CP do not automatically share the same life experience.