Hep C: Take Control
Beyond the Pilot Project
Helen McNeill
CEO Hepatitis Victoria
(until 5pm today!)
Acknowledgments
• Louisa Walsh
• Professor Richard Osborne
• Jenni Livingston
• Roy Batterham
Funders
• DOHA
• DH
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About Hepatitis Victoria
• An independent, community based, NFP organisation
funded primarily by the Victorian Department of Health
• Priorities
– Preventing the transmission of viral hepatitis
– Increasing access and referral to viral hepatitis
information, care, treatment and support
– Providing leadership and coordination for the
community response to viral hepatitis
• Specialty Programs: Aboriginal people, prisoners, young
people, CALD
• Strong and growing community participation program
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Living with hepatitis C
• People with hepatitis C feel strongly stigmatised and often
experience discrimination. This affects:
– confidence and identity
– employment
– access to psychosocial support, financial support, treatment
& services
– importantly, access to healthcare. Under-use of mainstream
services
• Common symptoms include extreme fatigue, flu like symptoms,
joint pain, itching, depression, anxiety, diarrhoea, night sweats
> chronic disease self management approach
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Hep C: Take Control Project
• Project conducted by Hepatitis Victoria from July 2009 - May 2010
• Hepatitis C-specific chronic disease self management program:
– 6 week group program
– Incorporating hepatitis C-specific health education
and goal setting/behavour change intervention
• Partnerships with The Alfred, Box Hill Hospital and Bendigo Health
• Project evaluation undertaken by Public Health Innovation team at
Deakin University
• Funded through Commonwealth Department of Health and
Ageing – Chronic Disease Self Management and Lifestyle
Risk Modification Grant.
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Concept mapping and program design
• A structured, systematic, computer-assisted process
• Involved groups with PWHC, policy makers, clinicians
• Data was used to develop a program logic modelsubstantially informed the evaluation
• Ensured content grounded in the needs of people with
hepatitis C:
– Disease specific information
– Lifestyle management
– Disclosure, stigma and support
– Treatment and the future
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Hep C: Take Control results
• 35 participants recruited
across 4 sites (5 groups)
• 26 completed 6 week course
• Areas of need identified
(PRISMS form)
– Being tired, no energy
– Stress and worry
– Managing work
– Exercise
– Quitting smoking.
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Hep C: Take Control results
• Health Education Impact Questionnaire (HeiQTM)
– Pre: Lower/much lower than national average in:
• technique and skill acquisition
• social integration and support
• health service negotiation
– Post: improvement in all categories of the hei-Q, with
most improvement in ‘social integration and support’.
• Hepatitis C Knowledge (Hep C: Take Control Quiz)
– Improvement in hepatitis C knowledge post 6 week
course.
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Hep C: Take Control results
• Participant feedback
– Extremely positive
– Rated very highly on:
• information being relevant
• the course being worth their time
• discussion of difficult topics being well handled
– Participants reported increased confidence in
managing their condition, and most participants would
recommend the course to others.
• A really valuable way to increase connection to our
affected community
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Things that helped/hindered the project
• Helped
– Early and ongoing involvement from PWHC
– Existing connection with Hepatitis Victoria
– Experienced CDSM leader + experienced hepatitis C
staff member
– Adequate funding
• Hindered
– People being directed to come (^ drop-out rate)
– Time constraints of the project
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The sustainability problem
• Original project was only 10 months
(from July 2009 – May 2010)
• Program Coordinator was employed
specifically for the project
• No further funding from DoHA after
this period despite project success
• What to do?
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What we did
• Commitment by Hepatitis Victoria to run minimum
of two courses per year as part of core business
• Multiple ideas for expansion of project:
– Prisons, phone coaching, web-based coaching
• Matched ideas to appropriate funding opportunities:
– Grants, proposals to government, philanthropic
• Kept program coordinator employed part time to explore
funding opportunities, write proposals/grants, run in-house
course and adapt course for different groups
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What we did
• Focus groups to adapt course to be suitable for MSM
(for Hep C/HIV co-infection group) and PWID
• Capitalised on Integrated Hepatitis C Service Model
program to put in proposal to Victorian Department
of Health to run courses in community with
hepatology nurses
• Hep C/HIV: Take Control with co-infected group
(attempted to run twice – not enough numbers)
• Justice Health proposal
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Focus groups
• Workers (PWID)
– Need incentives
– Take out goal-setting
– Probably wont work
• PWID (HRV and Open Family)
– Keen
– SMS reminders
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Where we are now
• Successful proposal with Integrated Care branch
of the Victorian Department of Health
– 12 month project from Dec 2011
– 10 courses across 5 sites (3 metro, 2 rural)
• Done 2, 1 fell-over, dates for 4 more, 5 rural +5
metro
– Co-facilitating with nurses on the ground
– Workforce development component
• Proposal still sitting with Justice Health – approval
pending funding
• Hep C/HIV: Take Control will run when/if sufficient
numbers recruited.
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Challenges
• Staying motivated
• Retaining staff member
• Recruitment of group
participants
• Changing staff at other
organisations
• Finding appropriate funding
sources/opportunities.
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What worked?
• The ability to have a
dedicated staff member
part-time
• Commitment to the
program by the
organisation
• Having lots of project ideas
• Seeking multiple funding
opportunities
• Perseverance
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Can any organisation do it?
• Yes !
• But……need:
– partnership approach
– cdsm/health coaching trained staff member (lots of
courses/ not that expensive)
– specifically tailored for marginalised groups
– flexible recruitment strategy
– take the course to the clients
– evaluation
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For more information
Louisa Walsh
Hep C: Take Control Program Coordinator
Hepatitis Victoria
(03) 9385 9106
louisa@hepvic.org.au
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