Caring for the Carers working in partnership to
achieve person centred care
Anne Marie Tunney
The Partnership Approach
Stroke Specialist Nurse
(Patricia)
Personal
experience
The
carers
NHSCT
Carer’s Co ordinator (Ann)
Ward Manager (Siobhan)
FONS
Stroke
Survivor
& Burdett
Trust for
Funding
Nursing
Stroke Co ordinator
(Shelagh)
NICHSA
UU
Practice
Development Nurse
(Anne Marie)
Where did the idea come from?
“There is plenty of help available for
those who have had a stroke but little
available for carers”.
(Carer of a stroke survivor)
Next steps…………………
Establish
need
Expertise
Carers support
group
Support
Function
Funding
Next steps……
2
1
Establish need
- Questionnaire
Funding and
expertise
- Research
-
- NICHSA
-
-
FONS – “Patients
First Programme”
£3000
Services of
facilitator
Workshops (London)
Practice
Development Nurse
Stroke Specialist
Nurse
3
Support
- Steering Group
- Working Group
The research...... Benefits of a support group
Improvements
on measures of
caregiving
burden
Reduced
depression
Decreased
sense of
loneliness
Increased
morale
Increased
knowledge
Chou, Lui & Chou, 2002
Cook & Laris, 2000
Causeway Stroke Carers Group
Values Clarification Exercise – The Vision
The purpose of the Causeway Carers Support Group is
to meet together with people in a similar position and to
support and receive support and learn from each other.
This will help us to cope by relieving tension, having
fun and giving us ‘me time’. New friendships will be
formed through chatting and interaction and advice and
shared information from visiting speakers will help us
to grow together.
Function of the group
PR
Social interaction
Educational
Various speakers
Time to ask
questions
Discussion
Quarterly Newsletter
Support
Editorial board – group
Companionship
Up to date info/recipes
Sharing of ideas
Local radio
Advertising group
Sharing of experiences
Learning from each
other
Posters and leaflets
Public areas
The activities…………………..
Educational
Social
Discussion
-
Reflexology
session
-
Health checks
– NICHSA
-
Shopping
trips
Ward Manager
– action
planning
-
Carers wishlist
-
Communicating
with stroke
survivor – SALT
-
Visit to
Garden
centre
-
-
Stroke
awareness
week
-
Scone baking
Experience
based
questionnaire
and listening
lab
-
-
Carers (NI) –
Benefit
awareness for
carers
Stroke Awareness Week
CARER’S WISHLIST
The Carer Wish List……………
“I wish I could
have my life
back the way it
was before the
stroke”
“More support
and
information in
the early days”
“Sometimes that
my sister could be
more mobile – it’s
hard to see her
getting weaker”
“As an only child
I wish I had more
family members
to help if needed”
“I wish I could be
wife, mother and
friend today
instead of carer”
“I wish I was not
so angry”
“A little free time to
relax… someone to
speak to when
feeling down…”
“I wish I had
time to play
with my son”
“We had planned
a trip to Canada
and I wish we
could go”
“I wish I had more
help to ease my
burden and have a
few hours to
myself”
“I wish I had
space to
myself”
“I would like 5
hrs- 1 day a
week to
myself”
Experience Based Design Exercise
NHS Institute for Innovation and Improvement (2009)
-
Opportunity for carers to share experiences and explore how improvements could be
made
- Uses patient and staff experiences to design and improve health care
- Four key aspects Capturing the experience – tell the story
Understand the experience – from a different perspective
Improve the experience
Measuring the improvement
-
Various tools
- Experience based questionnaire
-
Listening Lab
Experience questionnaire
First contact
(GP,
ambulance,
A&E)
Admission
Inpatient
stay
(visiting)
Discharge
Follow up
and support
Attitude of
staff
Information
provision
Happy
Supported
Safe
Good
Comfortable
Scared
Worried
Lonely
Sad
Out of control
Helpless
Hopeful
Happy
Supported
Safe
Good
Comfortable
Scared
Worried
Lonely
Sad
Thankful
Frustrated
Angry
Overwhelmed
Happy
Supported
Safe
Good
Comfortable
Scared
Worried
Lonely
Sad
Exhausted
Expensive
Nuisance
Lost
Happy
Supported
Safe
Good
Comfortable
Scared
Worried
Lonely
Sad
Confused
Scared
Responsible
Angry
Happy
Supported
Safe
Good
Comfortable
Scared
Worried
Lonely
Sad
Useless
On my own
Responsible
Helpful
Distant
Understanding
Disregarding
Caring
Aggressive
Attentive
Helpful
Sparse
Embarrassed
Poor
Unapproachabl
e
Confusing
Helpless
Write your
own words
here
Why did you
feel like
this?
Listening Lab
Taped – written consent
Thematic content analysis
Themes identified………………
A sense of loneliness –
“I was just on my own”
Lack of information provision –
“I just wanted someone to come and talk it over – was he going to die?”
Effect of stroke on relationships –
“Things will never be the same again”
Effect on the carer –
“ I just cried and cried”
Loss of privacy –
“District nurse at the backdoor, doctor at the doorbell, carer trailing teabags
across the floor, whilst I try to eat breakfast with my family”
Evaluation
Session Evaluation
“it’s time out for me to meet people in the same situation”
“we all understand each others problems and heartaches’”
Overall evaluation
“When we first met and I looked around the room… wondered how we would get on…now one
big family’”
“benefits of sharing with others who understand – not just being ‘a grumpy old woman’,
“creation of a bond of friendship”
“being better able to cope with caring role”
“social benefit of getting out and about”
Sustainability
……………… The Future
•
Funding
• Self funding
• Members proactive
•
Support
• Personal and Public Involvement (PPI) strategy for NHSCT
• Presentations
• Carers Strategy Group (NHSCT)
• Practice Nurses (NHSCT)
• Listening and Learning together (Patient & Client Council)
• Roll out to other areas of NHSCT
•
Membership
• Increased
• Creation of database of carers
•
No men!