experts in our own care!

1. experts in our own care!

2. Welcome and Introductions • Welcome • Facilitator Introductions • Participant Introductions • Turn to your right and introduce yourself with your name, home country, and one expectation you have from this workshop

3. The Global Framework Positive health, dignity and Prevention

4. The Global Framework What do we mean by Positive Health, Dignity and Prevention?

5. Positive Health, Dignity and Prevention is … …our advocacy for holistic health and wellbeing of people living with HIV.

6. Positive Health, Dignity and Prevention is … … our advocacy for the leadership of people living with HIV

7. Where did the concept come from? At an International Consultation, held in Tunisia in April of 2009 these were some messages that PLHIV shared from their home countries…

8. LATIN AMERICA “HIV-positive people should not have sex.”

9. EASTERN EUROPE “My doctor told me, use condoms or go to prison.”

10. AFRICA ‘HIV-positive women cannot have children’

11. Need to shift towards a more empowering concept that… • Places PLHIV at the center of their own care • Addresses the context in which we live (economic, educational and socio-cultural, gender) • Respects diversity • Advocates for a supportive and protective legal and policy environment

12. Values and PrinciplesSource:GNP+, UNAIDS. 2011. Positive Health, Dignity and Prevention: A Policy Framework. Amsterdam, GNP+. • People living with HIV must be leaders in the design, programming, implementation, research, monitoring and evaluation of all programmes and policies affecting them. "We are more than patients”

13. Values and Principles Source: GNP+, UNAIDS. 2011. Positive Health, Dignity and Prevention: A Policy Framework. Amsterdam, GNP+. • A human rights approach is the foundation of Positive Health, Dignity and Prevention. “We will not be treated as vectors of transmission.”

14. Values and Principles Source: GNP+, UNAIDS. 2011. Positive Health, Dignity and Prevention: A Policy Framework. Amsterdam, GNP+. • Preventing HIV transmission is a shared responsibility of all individuals irrespective of HIV status. "We are all responsible for HIV prevention”

15. Values and PrinciplesSource: GNP+, UNAIDS. 2011. Positive Health, Dignity and Prevention: A Policy Framework. Amsterdam, GNP+. • Sexual and reproductive health and rights must be recognised and exercised by everyone regardless of HIV status. ‘We have needs and desires to be fulfilled’

16. Perspective: Zambia How have we seen this action at a national level?

17. Insisting on training for providers • PLHIV advocacy for nurses, doctors, community health workers and lay counsellors to be trained to a certain standard to ensure • Full information • Full choice • Non-judgemental and supportive attitude

18. Developing health charters • Mutual agreement between clients and providers about what they want to see: • Issues of confidentiality, disclosure and appropriate referrals • Practical issues, e.g. opening times, service provided • Agreement on processes – what to do when an issue arises? How to handle it with mutual respect

19. Quality Assessment ToolScore Cards • Speaking up when things are not right! • Using score cards to monitor • what isworking • what isn’t so it can be improved!

21. The Case for InvolvementSource: http://www.gnpplus.net/en/programmes/empowerment • People living with HIV have unique expertise to bring to the table – to inform governments where and how programmes can be strengthened and improved. • It is therefore important to increase the skills of many more people living with HIV so that they have the confidence to speak out in key decision-making forums.

22. Decision-Making Models

23. How do we make decisions? • Estimate the number of candies in the jar. • Pair up with another person. • As a group of 2 make an estimate. • Together, join another pair and as a group of 4, make an estimate. • Finally, as a four, join another four, and as a group of 8, make a final estimate.

24. Growing in Learning

25. Break

26. Breaking it down: how to become involved in health care decision-making • Involvement of People Living with HIV in Health Care Decision-Making • How People Living with HIV can be involved in Health Care Decision-Making • Opportunities for People Living with HIV to be involved in Health Care Decision-Making • Introduction to Quality Tools and Resources to Support Involvement of People Living with HIV in Health Care Decision-Making

27. METHODS OF INVOLVEMENT

28. Group Discussion How have you been involved in decision-making processes to improve HIV Care?

29. Methods of Involvement • Agitation • Activism • Advocacy

30. Methods of Involvement • Agitator • One who stirs up public feeling • Activist • One who takes direct vigorous action • Advocate • One who promotes the interests of another

31. Process for Determining Method of Involvement • Identify the opportunities for improvement • Identify stakeholders • Evaluate relationships between stakeholders • Identify potential allies and partners • Build coalitions • Set goals, develop message, identify areas for collaboration • Select method

32. Selecting Involvement Method

33. Which Tool for Advocacy

34. Advocacy for Quality Improvement • Improves • Self • Relationships • Community

35. Individual • Self-Management • Knowledge • Skills • Self-Activation • Active Engagement • Responsibility • Individual Involvement • Retention • Treatment Adherence • Personal Lifestyle Choices

36. Interpersonal • Me – My Doctor • Me – My Family • Me – You

37. Community • Needs Assessment • Community Prioritization • Community Decision-Making

38. Quality Improvement Advocates • Self-managing clients • Comfortable with data • Effective communicators • Comfortable with technology • Effective and supportive team members • Quality improvement literate

39. Prioritization

40. Prioritization Activity • Using the list of care priorities, individually rank each of the concerns in order of importance to you • Discuss in your small groups your personal rankings and together come up with a single ranking • Select a Recorder and Presenter to share with the group your outcomes and process

41. Growing in Learning

42. OPPORTUNITIES FOR PLHIV INVOLVEMENT

43. Levels of Access

44. INVOLVEMENT OPPORTUNITIES

45. Channels for Informing and Educating

46. Healthcare Decision-Making • Paternalistic Model • The physician chooses the treatment without involving you in the decision-making process, and then you passively acquiesce to professional authority. • Informed Model • The physician presents all relevant treatment options and their benefits and risks. • You then deliberate and makes a treatment decision. • Shared Model • You and the physician share all stages of the decision-making process. • You exchange information, declare treatment preferences. • Together you work to build consensus on the most appropriate treatment to implement for you!

47. Introduction to Quality tools and Resources

48. Tools and Resources

49. Tools and Resources

50. ‘QI is not QA’