the carer life course e-learning tool alison parkinson policy officer

  The Carer Life Course e-learning tool

Alison ParkinsonPolicy 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 phasesImpact of the degree of the care recipient’s wellness on the

carerImpact of the carer’s other relationships on his/her wellbeingOngoing grief and lossOngoing need for supportImpact on financial resourcesNeed for carers input to be heardWorry about what will happen when the carer is goneFear 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 andhave a general idea about the kinds of issuesthey face, the information they need, and thekind of supports that might be helpful.

Similarlythe framework could also be used as a tool totrack 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

• 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 e-tool in 2011

• Evaluation to be conducted after 12 months

www.carerlifecourse.com.au

Alison Parkinson

Policy OfficerCarers NSWP: 02 9280 4744alisonp@carersnsw.asn.auwww.carersnsw.asn.au

www.carerlifecourse.com.au