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The FASE Study
(Fatigue After Stroke Education)
Liz Tremayne
Clinical Lead Occupational Therapist
@TremayneLiz
Aims
Understanding fatigue from a stroke survivors’ perspective
Stroke survivors’ current experience of fatigue education
Stroke survivors’ perceptions of what fatigue education could include
Rationale for study
Barrier to rehabilitation 1, 2,3
Prevalence of fatigue 1,4,5
Significance of fatigue 6,7
Mortality and morbidity 4,7,8.9.10
Evidence base and Guidelines
Evidence base 12,13,14,15
RCP Stroke Guidelines 16
Inconsistency in education 7,
17, 18,19, 20, 21,
FASE STUDY
Qualitative study
Single center for recruitment
Inclusion criteria
Sample demographics
Data collection and analysis
Face to face interviews of 10 stroke survivors
Thematic analysis
Implications for practice
Themes
Acceptability and
adaptability
The
individual
and diverse
nature of
fatigue
Variability
of stroke
survivor
education
The role of
stroke
services
Overarching
Theme
Theme
Acceptability and adaptability
Mechanism of how stroke survivors cope with PSF
“I think the main thing is accepting what happened because unless you accept it you can’t necessarily deal with it. By talking about fatigue it makes it clearer. You understand and accepting it more.”
Acceptability definition
Adaptability definition
Variability of acceptance and adaptability
“At the moment we have had to make some changes and we have accepted it.”
“It’s too much and I just give up. I think just don’t bother - it’s easier.”
Factorsaffecting acceptability and adaptability
Invisibility and legitimacy
Knowledge and acknowledgement
of PSF
Coping skills
Values and beliefs - Self expectation
Previous coping strategies
Adjustment of role/responsibilities
Family and carers support
Expectations of others
The individual and diverse nature of fatigue
The experience of
fatigue
Interactive nature of fatigue
Causes of fatigue
Predictability and
variability
Invisibility of fatigue
Interactive nature of fatigue
“Everything has become harderand takes a lot more effort like thewalking, talking and thinking. Itjust tires me out and makeseverything worse, like when I’mtired the walking, talking andthinking is worse. It all interacts”.
Fatigue
Impact of
Fatigue
Daily activities
Work / Leisure
Social IntegrationTherapy
Mood
Participant Quotes
“Where as before I could keep going, ran
the house and everything… not now,
family have to help me… and that’s hard…
having to ask for help… putting more on
them and feeling a bit useless.”
“I can’t go out so much in the evenings as
I get too tired… or do the social things like
going out with mates as I can never last
long enough.”
“You’re angry inside that you’re not the
person you were and momentarily you
wonder if you’re ever going to be back
completely as you were before this
happened or whether this is going to go
on.”
Variability of education
Assessment
Nature and consistency of education provided
Participant quotes
“Stroke Association gave me
information. It’s helped me by
telling me that it’s normal, that’s
a big part of it.”
“The therapist is working on
getting me back into a routine,
shows me a way of making
things more simple…
monitoring my tiredness and
resting.”
“They warned me but it was
quite quick and just a warning
really. The leaflet gives a bit
more information and some
general tips but a lot doesn’t
really apply to me or my
situation and doesn’t help me
cope with it.”
Variability of education
Lack of education within hospital
Acknowledgement by MDT.
“I was getting on well at
the hospital and then
suddenly I was at home
and I didn’t know what to
do. When you come out of
hospital, nobody’s been or
anything”
“I think they should have
discussed tiredness with
us and that it might be a
problem, so we could
understand and plan for it,
rather than not know and
wonder why everything
seemed really hard.”
The role of stroke services
• Stroke services responsibility
• Staff training and education
• A team approach
• Sufficient staffing
“Having all of the people within stroke all working together.”
What do Stroke Survivors recommend?
Fatigue Assessment
Social, physical and cultural environment
Occupational demands and routines
Stroke survivor
• Factors that exacerbate or maintain fatigue
• Factors which mediate fatigue
• Essential occupational demands
• Flexibility for adaptation
• Fatigue severity and pattern.
• Triggers and warning signs
• Character
• Previous coping skills
• Capacity for education
Core fatigue education
Knowledge of fatigue
Impact of fatigue
Triggers and warning signs
Strategies to monitor fatigue
Family education
Core fatigue strategies
Planning
Pacing
Prioritizing
Energy conservation
Graded activity
Sleep hygiene
Tailoring of education
Timing
Varying verbal, written and practical support
Format
Duration
Intensity
Context
Individualized strategies
Future Study
Increase sample and sites
Clinician and carer perspectives of fatigue education
Develop a model of fatigue education
Feasibility trial of PSF education
Study Support
References1. Van Eijsden. J.M., Lambert Van de Port, I.G., Visser – Meiley, J.M.A., Kwakkel, G. (2012)
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