Early and continuing
Rehabilitation: Understanding
the emotional and social
impact of stroke
Understanding and assessing the impact of stroke and
approaches to assist.
Introduction and learning objectives
• This session looks at an overview of the psychological,
emotional, and social impact of stroke.
• It is recommended for all core, MDT staff working across the
stroke pathway. It links to the stroke specific competencies on
the the Stroke Specific Skills and Competencies framework
and includes:
• Section 4: Immediate Care, specifically: 4.2.6, for all staff to
“Demonstrate empathy and to provide support to the person
and carers during the initial stages of the acute stroke
experience”.
• Section 5, Early and Continuing Rehabilitation: 5.1.17: Staff to
be able to “Explain the psychological, emotional, and social
impact of stroke and incorporate assessment and intervention
of these factors in to rehabilitation”.
• Section 5, 5.1.4: “Goal setting”
Psychological presentations
• This is the first of a module on psychological issues after
stroke.
• It focuses specifically on the impact of stroke and
understanding a person’s experience and adjustment.
Approaches to help a person are also presented, as is the
need to identify and refer on people who are experiencing
significant psychological issues.
Presentations in this Module
The presentations in the psychological module include:
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Mood screening
Understanding low mood and depression problems after stroke
Helping with low mood and depression after stroke
Understanding people who experience anxiety problems after
stroke
Managing anxiety after stroke
Anger
Self esteem issues following stroke.
Loss
The impact of stroke
• Stroke is often a sudden health event which impacts
immediately on how people can function. People have
little or no preparation for the dramatic effects that a
stroke has on their lives.
• People describe many reactions to the experience of
having a stroke. Some will find it quite frightening, or
bewildering. Some cannot remember the details of
having a stroke, or being very ill, therefore these gaps in
memory can be difficult in themselves. Some people
have very vivid memories which may also trouble them.
• Others may seem to cope better but are still obviously
upset that they have suffered a stroke.
The impact of stroke
• Many people understandably find having the stroke, and being
in hospital a challenge. They have to often deal with a complex
set of tasks from the outset (being in hospital, taking in
information, meeting new people), and sorting through feelings
about what has, and is happening to them. This is in addition to
the consequences of the stroke itself.
• As staff we can help by supporting people through the
difficulties and issues they are facing. This takes us to be
person centred and to try and work out the impact of the stroke
for each individual, including the:
• Physical
• Cognitive
• Sensory
• Perceptual
• Behavioural
• Psychological and emotional.
Person centred care from the outset: our approach
• Our support to understand the emotional impact of having a stroke
and therefore helping a person to work through what has happened to
them is crucial from the outset of having the stroke to the longer term.
• The impression of the patient of how staff have cared for them after
their stroke has an impact on their initial, and long term psychological
response. Reflections of what helped/did not help stay with a person
for a long time, therefore it is imperative that we all do our best to
make the person feel understood and their needs met at all times.
• Remember when you were last in hospital, or in a medical setting
when you felt vulnerable and when you needed support, how your
impressions of what care you received made an impression (either
good or bad?).
Making sense of peoples emotions through the stroke
pathway
• We therefore need to get to know each person, including how
they are feeling. We try to work out what is important to them;
trying to accommodate their needs and choices, their likes and
dislikes. This enables people to feel understood and more
empowered at what is a difficult time in their life.
• It is important to acknowledge with patients that there will be
an emotional response to having a stroke. We can “listen out”
for the issues that people may be facing and help them
through the emotional/adjustment process after stroke. People
may have different feelings and challenges over various time
frames after a stroke, as will their family members.
• Therefore we are helping people understand the psychological
impact of stroke, and providing them with support needed to
work through this.
Look at this quote from Linda about the
immediate impact of stroke
“ When I was in the hospital and it began to dawn in me
what had happened to me I was trying to make out what
was going to happen. I could not feel the left hand side of
my body and could not move it. Everyone was telling me
that things will improve, but you don’t know whether they
are just saying that, or is it really going to get better? I
was wondering how I was going to manage, and how I
was going to be there for my daughters. It was scary.
There’s no other words to describe it, just being afraid of
what was ahead”.
Exercise: what emotions and challenges may people experience at the
acute, early rehabilitation in the longer term after stroke.
Time phase
following
Stroke:
Acute
Early rehabilitation
Continuing
rehabilitation and in
the longer term
How may the
person who has
had a stroke be
feeling? And what
issues may they be
facing?
How may the family
member for the
person be feeling?
And what issues
may they be
facing?
Model of time phases and feelings after stroke
Time phase following
stroke
How may the person
who has had a stroke
be feeling? Issues
faced.
How may the person
who has had a stroke
may be feeling?
Issues faced.
Acute
Anxiety, disorientated,
fear, embarrassed at
asking for help,
tearful.
Worry, fear as to what
will happen,
tiredness.
Early rehabilitation
Effort at getting
better, low.
Trying to keep going
but worried, down
Continuing
rehabilitation and in
the longer term
Struggle between
hope for recovery and
reality
Role of a caregiver
emerges
Adjustment models
• It is clear that people will have many feelings and challenges
after stroke and these will vary from individual to individual and
across the stroke journey. Some people for example feel
instantly shocked, where others feel fine psychologically
immediately after stroke but become low and anxious upon
their return home.
• Some authors liken the emotional adjustment to stroke as
being similar to the process of grieving following bereavement.
Wilkinson (1995) suggested that patients may go through a
number of stages, “emotionally processing” and making sense
of the stroke. Within each stage people may have a number of
feelings, thoughts, behaviours and physiological responses.
Stage models of Adjustment
Please note that not everyone will go through the stages in
sequence, and some will stay in one stage for a long time, e.g.
anger, or skip between stages.
Explaining adjustment and individual reactions to
stroke
• We can explain to people that they may go through an
emotional adjustment reaction as described. By doing this we
may help to normalise the psychological reactions to stroke
and the process of adjustment.
• People often unconsciously focus on the loss that a stroke has
presented them with, whilst at other times they may focus on
getting on with restoring what they can in life. This process is
like our minds considering or “working through” two sides of a
coin: grieving the things we have lost, whilst re-building what
we can.
• We sometimes wonder why people react differently to stroke.
This is likely to be a complex matter; the interaction of the
stroke and the person themselves. This is explained in the
following table.
Adjustment can be influenced by the stroke
person’s “make up” and the stroke itself
Two examples
• Let’s look at two people who experienced a left PACS, ostensibly with
similar stroke symptoms.
• “Beth” and “Alex”, both had stroke effects which included hemiparesis
in the right side of their body and mild speech and language
difficulties.
• Taking Beth, prior to the stroke Beth spent a lot of time with her
supportive family and had a number of friends. She enjoyed music,
cooking and trips out with the family. She had always considered
herself to have a good life and was reasonably optimistic and flexible
in her approach to her life. Beth adjusted reasonably well to the
stroke. Her family and friends remained very important to her and she
resumed some hobbies. Naturally she was frustrated at times with her
limitations caused by the stroke but accepted help (for example
around cooking). She took every opportunity to get out!
“Alex”
• Alex had been a man who had always been independent. He had
prided himself on educational achievement and had been proud of his
abilities. He sometimes called himself a “perfectionist”. Alex retired
some years ago and was waiting for his wife to retire before going
travelling. Alex and his wife had one child who lived abroad. Alex and
his wife described themselves as relatively self contained and
although they had friends they didn’t spend a lot of time with them.
• Alex struggled to come to terms with his stroke. He wanted a full
recovery and found it hard to settle for less. He felt cheated that this
had happened to him. His wife felt the same way.
• This shows how two individuals can react differently to a stroke based
upon their attributes as shown in the table. No one person is right or
wrong, as we rarely can change our attributes. This simply helps us to
understand and empathise with a persons reaction to their situation.
Helping Approaches
• The next section of the presentation looks at the skills we
use to help people psychologically after a stroke. All staff
can and should use these core skills and by using them
we are helping the patients and their families throughout
the stroke journey.
• Specific techniques including listening skills, problem
solving, activity scheduling and goal setting as
recommended in a stepped care model for psychological
issues following stroke are covered.
A note on the use of our core psychological skills
• The Accelerating Stroke Improvement (ASI) guidelines
for assisting with psychological care, specify that the
culture of stroke teams across the pathway needs to be a
psychologically informed culture, and as such it should
be recognized that staff (not just specialist mental health
staff) should spend time with patients exploring and
supporting the impact of the stroke, as a matter of their
job. It is asserted that this should be seen as a valid use
of time.
• Also it states that “mental health needs should have
equal status with physical health problems following
stroke”.
The Stepped care approach for providing psychological care
in stroke: level 1 skills are approaches for all staff to use.
Helping approaches 1. Use core counselling skills
• Rogers (1957) outlined core counselling conditions, which were
considered essential ingredients for a therapeutic relationship.
These skills are still as relevant today and we use them to help a
person feel understood after a stroke. They include:
• Empathy - Empathy is the ability to “stand in the patient’s
shoes”
• Genuineness - To be real, natural and open
• Warmth - Remaining open. Not showing defensiveness or blame
the patient or others for situations/events.
• Unconditional Positive Regard - Accepting and valuing the
person, regardless of their background. Cconveying positive
regard and respect for them.
• Remember your non verbal behaviour is as important as what
you say in your communication with others!
Using these core skills, examples:
• Warmth - Remaining open. Ask people how they are feeling
and whether they have particular emotions or thoughts. For
example you could say “some people feel quite worried after a
stroke, is there anything that is worrying you?” or “Some
people feel quite sad and down after a stroke, do you ever feel
that way?”.
• Empathy - Talk to people about the impact of a stroke and let
them tell their “stroke story”. Work to understand their
perspective and show true empathy whilst giving
encouragement and some hope.
Helping approaches 2: Problem
solving
• Once we are aware of the things that are important to a person
we can begin to look at what may help them. Little things as
well as big things can be addressed. For example a person not
getting their hair done as usual in a morning may seem like a
significant issue to them, as someone may feel like (s)he wants
to avoid visitors as (s)he doesn’t “feel” (look) right.
• Being on a ward can also be hard, therefore problem solving
any activity that helps; being mindful of hobbies and
attachments, and offering time off the ward when possible. All
these things can help a person to have a better day and will
make people more psychologically cared for.
• Control and choice are key things that people need to regain
as soon as possible following a stroke. This may be around
small things such as where people eat their meals, to a patient
wanting to take control of their medication.
Problem solving exercise
• With patients we can use
problem solving templates to
guide our interventions. This is
described below.
• Take a sheet of paper and write
down the important issues or
problems, brainstorm possible
solutions and then pick one
and try it. Remember if people
feel down they are less likely to
see solutions there fore more
help may be required.
Problem/
important
Issues for
the person
Possible
Solutions
Best
available
solutionto try
Helping Approaches 3: weekly therapy
timetables and scheduling activity
• Having achievable and meaningful goals each day and each
week helps people to feel that they can achieve something and
that their week has some predictability. This is particularly
important once past the acute phase after stroke.
• People can also plan around the sessions of rehabilitation, for
example relatives and friends can plan their visits and can plan
positive events in a day for an individual, for example taking
them out, watching a favourite programme, having a special
friend call. If there are volunteers on the ward this can help
them organise their activities.
• This model is adopted by services in the region such as in
Newcastle where every stroke patient is scheduled their
therapy on a weekly timetable. Feedback is very positive.
Example of a weekly timetable
Day/
Time
AM
8-9
9-10
10-11
11-12
PM
1-2
2-3
3-4
Mon
Tues
Wed
Thurs
Fri
Sat
Sun
Timetable for patient “Annie”
Day/Time
Monday
Tuesday
Wednesday
Thursday
8-9am
Dressing
practice
(with OT)
Dressing
practice
Dressing
practice
Dressing
practice
10-11am
Speech
therapy
Physio
session
Speech
therapy
Crafts with
volunteers
11-12 noon
rest
Film run by
volunteers
Dr ward
round
rest
1-2pm
Physio
session
Speech
therapy
Physio
session
Physio
session
with family
2-3pm
visitors
Go out with
family
visitors
Home visit
Helping approaches 4: Goal setting: SMART goals
• This links a little with problem solving and activity scheduling
but asks the patient to take more control of setting goals. The
SMART framework helps people to make goals more tangible
and person centred, planning goals that are:
•
•
•
•
•
Specific
Measurable
Achievable
Realistic
Targeted
• Remember SMART goals can help improve peoples’ mood,
introducing the concept of mastery and pleasure in each day,
and each week, based upon peoples needs and likes/dislikes.
Helping approaches 5: Identification of Psychological
problems in addition to adjustment to stroke
• Our role as health professionals is to try and assist people to cope
with the stroke and to find ways to help them. Most people will
have some psychological reaction and in many instances this is
normal and people will cope with the significant life event of stroke
with support, although there will be ups and downs along the way.
• Our role is also to assist with the identification of people who may
be suffering more distressing psychological reactions such as
clinical depression or anxiety which require identification and
management as they so negatively impact upon people’s lives.
• Research has suggested that early identification and alleviation of
psychological distress is essential in order to prevent more
serious psychological difficulties developing that can impact on
recovery and overall outcome.
If untreated, psychological disorders lead to
higher levels of:
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•
•
•
•
•
Mortality
Suicide
Long term disability and institutionalisation
Hospital readmission
Higher utilisation of outpatient services
Patient distress.
• See House et al, (2001), Morris et al, (1993)
Identifying difficulties
• The range of psychological issues which can be
experienced by our patients after stroke may include:
• Depression (30% of patients will suffer from depression at
some point post stroke and a significant proportion of these
remain potentially undiagnosed or inadequately treated;
Hackett et al, 2005).
• Anxiety Rates for anxiety following stroke have been estimated
to be between 22-28% in the acute stage and at follow-up, that
means one in four patients are anxious.
• Emotionalism
• Adjustment disorder
• Anger problems
• Problems with social re-integration
• Family problems.
Management of difficulties
• People who experience such psychological symptoms
appreciate the identification and help offered to deal with the
problem that is causing them distress.
• Staff can sensitively inform people that these are common
difficulties after stroke, and that the problems are amenable to
intervention, with support available.
• Levels of intervention (including referral on to a service) should
be determined by the psychological problem faced. Health
professionals such as psychologists, doctors, occupational
therapists and nurses are there to assist in assessment and
management of the problem. Community support groups can
also be very helpful to people, as are informational resources.
Summary
• Psychological support should always be a priority in providing
care after a stroke. Helping people to be able to express their
feelings, thoughts, fears and frustrations following stroke can
help them a lot. This includes acknowledgement of the
physical limitations, the emotional and social impact of a stroke
and considers the process of adjustment with the individual
and family.
• We are looking to understand and help each individual through
a difficult time in their life.
• Models help us to understand that people will go through
feelings and challenges throughout the stroke journey.
• Intervention approaches (core skills) are important to use,
based on understanding the person and the impact of stroke.
This can help us to plan goals and interventions to help them.
• Inclusion of the family is also key: in order to support the
person and also to help the family through the difficulties faced.
A final word on the positive effect of
psychological support
“ Psychological support puts you back together again. The timing
can’t be predicted…sometimes it’s when you come out into
your real world after hospital or it may be two - or more –
years later when you discover that you will not make a ‘full’
recovery…it’s about reinvention and finding direction”.
Psychological support is provided by every member of the
team at every encounter with the patient and their family.
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Psychological and emotional.