The study aim was to explore the experiences of people with progressive multiple
sclerosis (MS) and their standing assistants during their participation in SUMS, a
randomised controlled trial (RCT) of a home-based, self-managed standing frame
programme.
Design
A qualitative approach, using audio diary methodology was used to ...
The study aim was to explore the experiences of people with progressive multiple
sclerosis (MS) and their standing assistants during their participation in SUMS, a
randomised controlled trial (RCT) of a home-based, self-managed standing frame
programme.
Design
A qualitative approach, using audio diary methodology was used to collect data
contemporaneously. Diary data were transcribed verbatim and analysed using
thematic analysis.
Setting
Participants were recruited from eight health-care organisations in two regions of the
United Kingdom. The intervention was home-based.
Participants
As part of the RCT, 140 participants were randomly allocated to either usual care or
usual care plus a standing frame programme. Using a sampling matrix 12 people
with progressive MS (six female, aged 35–71 years, Expanded Disability Status
Scale 6.5-8.0) and eight standing assistants (four female) kept audio diaries of their
experiences.
Intervention
The standing frame programme involved two face-to-face home-based
physiotherapy sessions to set up the standing frame programme, supplemented by
educational material designed to optimise self-efficacy. Participants were
encouraged to stand for at least 30 minutes, three times a week for the 36 week
study period.
Results
Four main themes were identified: “Feeling like the old me”; “Noticing a difference”; “I
want to do it right” and “You have a good day, you have a bad day”.
Conclusions
Supported standing helped people with progressive MS feel more like their old
selves and provided a sense of normality and enjoyment. People noticed
improvements in physical and psychological symptoms, which were often associated
with increased participation in activities they valued. Provision of support from a
physiotherapist and recognition of the variable nature of the condition were
highlighted as factors to consider when establishing a standing programme.
