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Hep C: Take Control Beyond the Pilot Project

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. About Hepatitis Victoria.

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Hep C: Take Control Beyond the Pilot Project

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

  2. Acknowledgments • Louisa Walsh • Professor Richard Osborne • Jenni Livingston • Roy Batterham Funders • DOHA • DH

  3. 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. 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. 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. 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. 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. 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.

  9. 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. 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. 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. 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. 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. Focus groups • Workers (PWID) • Need incentives • Take out goal-setting • Probably wont work • PWID (HRV and Open Family) • Keen • SMS reminders

  15. 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. Challenges • Staying motivated • Retaining staff member • Recruitment of group participants • Changing staff at other organisations • Finding appropriate funding sources/opportunities.

  17. 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. 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. For more information Louisa Walsh Hep C: Take Control Program Coordinator Hepatitis Victoria (03) 9385 9106 louisa@hepvic.org.au

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