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Hep C: Take Control Beyond the Pilot Project Helen McNeill CEO Hepatitis Victoria (until 5pm today!)

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Presentation on theme: "Hep C: Take Control Beyond the Pilot Project Helen McNeill CEO Hepatitis Victoria (until 5pm today!)"— Presentation transcript:

1 Hep C: Take Control Beyond the Pilot Project Helen McNeill CEO Hepatitis Victoria (until 5pm today!)

2 Copyright © Hepatitis Victoria Acknowledgments Louisa Walsh Professor Richard Osborne Jenni Livingston Roy Batterham Funders DOHA DH

3 Copyright © Hepatitis Victoria 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

4 Copyright © Hepatitis Victoria 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

5 Copyright © Hepatitis Victoria 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.

6 Copyright © Hepatitis Victoria 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 model- substantially 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

7 Copyright © Hepatitis Victoria 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.

8 Copyright © Hepatitis Victoria Hep C: Take Control results Health Education Impact Questionnaire ( HeiQ TM ) –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.

9 Copyright © Hepatitis Victoria 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

10 Copyright © Hepatitis Victoria 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

11 Copyright © Hepatitis Victoria 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?

12 Copyright © Hepatitis Victoria 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

13 Copyright © Hepatitis Victoria 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

14 Copyright © Hepatitis Victoria Focus groups Workers (PWID) –Need incentives –Take out goal-setting –Probably wont work PWID (HRV and Open Family) –Keen –SMS reminders

15 Copyright © Hepatitis Victoria 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.

16 Copyright © Hepatitis Victoria Challenges Staying motivated Retaining staff member Recruitment of group participants Changing staff at other organisations Finding appropriate funding sources/opportunities.

17 Copyright © Hepatitis Victoria 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

18 Copyright © Hepatitis Victoria 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

19 Copyright © Hepatitis Victoria For more information Louisa Walsh Hep C: Take Control Program Coordinator Hepatitis Victoria (03) 9385 9106

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