Caring for the Carers - working in partnership to achieve person centred care Anne Marie Tunney
Mar 29, 2015
Caring for the Carers - working in partnership to
achieve person centred care
Anne Marie Tunney
Caring for the Carers - working in partnership to
achieve person centred care
Anne Marie Tunney
The Partnership ApproachThe Partnership Approach
NHSCT
Stroke Specialist Nurse (Patricia)
Carer’s Co ordinator (Ann)
Ward Manager (Siobhan)
The carers
StrokeSurvivor
Stroke Co ordinator (Shelagh)
FONS& BurdettTrust forNursing
UUPractice Development Nurse (Anne Marie)
NICHSA
Funding
Personal experience
Where did the idea come from?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………………… Next steps…………………
Support
Establish need Expertise
Function
Funding
Carers support group
Next steps……Next steps……
1
Establish need- Questionnaire
- Research
- NICHSA
2
Funding and expertise- 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 groupThe research...... Benefits of a support group
Improvements on
measures of caregiving
burden
Reduced depression
Increased morale
Decreased sense of
loneliness
Increased knowledge
Chou, Lui & Chou, 2002Cook & Laris, 2000
Causeway Stroke Carers GroupCauseway Stroke Carers Group
Values Clarification Exercise – The VisionValues 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 groupFunction of the group
Social interaction
PR
Educational
Various speakers
Time to ask questions
Discussion
Support
Companionship
Sharing of ideas
Sharing of experiences
Learning from each other
Quarterly Newsletter
Editorial board – group
Up to date info/recipes
Local radioAdvertising group
Posters and leafletsPublic areas
The activities…………………..The activities…………………..
- Reflexology session
- Shopping trips
- Visit to Garden centre
- Scone baking
- Carers (NI) – Benefit awareness for carers
- Health checks – NICHSA
- Communicating with stroke survivor – SALT
- Stroke awareness week
- Ward Manager – action planning
- Carers wishlist
- Experience based questionnaire and listening lab
Educational Social Discussion
Stroke Awareness WeekStroke Awareness Week
The Carer Wish List……………The Carer Wish List……………
“I wish I could have my life
back the way it was before the
stroke”
“We had planned a trip to Canada
and I wish we could go”
“Sometimes that my sister could be more mobile – it’s
hard to see her getting weaker”
“I wish I could be wife, mother and
friend today instead of carer”
“I wish I was not so angry”
“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 wish I had time to play
with my son”
“A little free time to relax… someone to
speak to when feeling down…”
“More support and information
in the early days”
“I would like 5 hrs- 1 day a
week to myself”
“As an only child I wish I had more family members
to help if needed”
CARER’S WISHLIST
Experience Based Design ExerciseExperience 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
First contact (GP, ambulance, A&E)
Admission Inpatient stay (visiting)
Discharge Follow up and support
Attitude of staff
Information provision
HappySupportedSafeGoodComfortableScaredWorriedLonelySadOut of controlHelplessHopeful
HappySupportedSafeGoodComfortableScaredWorriedLonelySadThankfulFrustratedAngryOverwhelmed
HappySupportedSafeGoodComfortableScaredWorriedLonelySadExhaustedExpensiveNuisanceLost
HappySupportedSafeGoodComfortableScaredWorriedLonelySadConfusedScaredResponsibleAngry
HappySupportedSafeGoodComfortableScaredWorriedLonelySadUselessOn my ownResponsible
HelpfulDistantUnderstandingDisregardingCaringAggressiveAttentive
HelpfulSparseEmbarrassedPoorUnapproachableConfusingHelpless
Write your own words here
Why did you feel like this?
Experience questionnaireExperience questionnaire
Listening LabListening Lab
Taped – written consent
Thematic content analysis
Themes identified………………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”
EvaluationEvaluation
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 FutureSustainability ……………… 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!