Patient and public involvement : how service user engagement has informed research into falls intervention in people with Charcot-Marie-Tooth disease
2016
Patient and Public Involvement (PPI) is now a requirement
of many funders for clinical research. The INVOLVE
organisation defines PPI in research as “research being carried
out ‘with’ or ‘by’ members of the public rather than
‘to’, ‘about’ or ‘for’ them”. One aspect is consultation to
understand issues and identify research topics. Here we
present the method and results of a focused PPI activity
and how it has informed a research program for people
with Charcot-Marie-Tooth disease. This work aimed to consult
people with CMT on strategies they use to address the
problem of poor balance and falls. Two methods were used
to collate responses from people with CMT: (1) Workshops
were held as part of the CMT United Kingdom annual general
meeting. Attendees were asked to discuss and answer
two questions: 1-What have you found improves your balance?
2-What do you do or use to prevent falls? (2) The CMT
United Kingdom has a strong social media presence. They
gave permission for the two questions to be posted on their
Facebook page. Responses from both sourceswere collated.
Data was coded and thematic analysis was used to identify
the emergent topics. In total, 76 suggested strategies were
obtained for question 1 and 74 for question 2. For question 1,
the four most common strategies usedwere: use of orthoses
(22.4%); walking aids (21.1%); good footwear (19.7%); regular
exercise (17.1%). For question 2, the four most common
strategies used were: paying attention and planning ahead
(37.8%); using walking aids and support (28.4%); regular
exercise (9.5%); use of orthoses (6.8%). These results have
now been incorporated into a funded pilot home based falls
management/exercise intervention, and a PhD studentship
exploring the use of walking aids and the effect of orthoses
on balance.
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