The Carer Life Course
e-learning tool
Alison Parkinson
Policy Officer
The Carer Life Course
Framework
• An evidence-based approach to effective
carer education and support
• Developed by Dr Deanna Pagnini in 2005
• Original framework was mental health specific
• Expansion of the Framework Final Report, by
Dr Pagnini 2008
Constants across the phases
Phase 1: Something is wrong
• Sense that something is not quite right with
the care recipient
or
• The carer may be aware of the illness or
condition but not yet understand it
Phase 2: Confirmation
• A doctor or health care professional confirms
that something is not right
• The extent of the illness or condition is learnt
Phase 3: Adjusting
• Initial shock wears off
• The carer begins adjusting and readjusting to
the caring role
Phase 4: Managing
• The carer learns how to incorporate caring
into everyday life
• Some carers cycle between adjusting and
managing
Phase 5: Purposeful coping
• Purposeful and proactive caring, rather than
reactive
• The carer may face the same issues as faced
in phases 3 and 4, but is more able to handle
them
Phase 6: End of caring role
• End of the caring role
• The impacts of caring do not end with the
caring role
Constants across the phases
Impact of the degree of the care recipient’s wellness on the carer
Impact of the carer’s other relationships on his/her wellbeing
Ongoing grief and loss
Ongoing need for support
Impact on financial resources
Need for carers input to be heard
Worry about what will happen when the carer is gone
Fear about care recipients health and safety
The project
• To develop a web-based or online tool, based
on the Carer Life Course Framework
• Nine month time frame
• Funded by NSW Health
• Guided by feedback from key stakeholders
including key agencies, service providers and
carers
Why an e-tool?
• Users are able to work through at their own
pace in their own time
• Caters for carers with time constraints
resulting from caring role
• Accessible to rural and regional carers
• Increasing levels of access and use of
Internet in community, confirmed in Carers
NSW 2010 Carer Survey
Impacts
• Normalises carers experiences
• Shows carers they can reach a place of
purposeful coping
• Helps service providers to understand carers
experiences and needs at various phases
Impacts (cont…)
• Used by mental health services as an audit
tool
• Used by NGOs as a basis for advocating for
better support for carers
• Used by NGOs in their direct work with carers
• Used in the development of NSW Health’s
Family and Carer Mental Health Program
At any one point in time we could take a carer
and place them into the various phases and
have a general idea about the kinds of issues
they face, the information they need, and the
kind of supports that might be helpful. Similarly
the framework could also be used as a tool to
track or discuss an individual carer’s journey.
D Pagnini, 2005
About the e-tool
• Carer Life Course website hosts:
– Resource page with factsheets, websites and key
services
– Resource pages with Aboriginal, CALD, mental
illness, cancer, disability and chronic condition
focus
• The e-tool is linked to the Carer Life Course
website
Preview of e-tool
Interactive modules
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Description of phase
Carer stories
Issues faced
Carer relationships
Carer needs
Checklist
Tips for service providers
Feedback
Positive feedback from testing phase:
• Visuals
• Format
• Accessible nature of the information
Carer specific feedback
Carers reported:
• Immediate connection and sense of
belonging
• Finding comfort or familiarity with the carer
stories
• Quotes make carers feel “not alone”
Future directions
• Potential for expansion from general model to
include specific models (mental health,
cancer)
• Funding secured to expand and improve etool in 2011
• Evaluation to be conducted after 12 months
www.carerlifecourse.com.au
Alison Parkinson
Policy Officer
Carers NSW
P: 02 9280 4744
alisonp@carersnsw.asn.au
www.carersnsw.asn.au
www.carerlifecourse.com.au