Women for Positive Action is an educational program funded and initiated by Abbott Laboratories

1. Getting the most from the therapeutic relationship with your healthcare professional Angelina Namiba and Lorraine SherrWomen for Positive Action Women for Positive Action is an educational program funded and initiated by Abbott Laboratories

2. Women for Positive Action Angelina Namiba, UK Lorraine Sherr, UK

3. Women for Positive Action Women for Positive Action is a global initiative established to address the specific concerns of women living and working with HIV Women for Positive Action is led by a faculty of healthcare professionals, women living with HIV and community group representatives from across Canada, Europe, Latin America and South Africa www.womenforpositiveaction.org Contact us: WFPA@litmus-mme.com Twitter: @WFPA_HIV

4. WFPA mission To empower, educate and support women with HIV and the healthcare professionals and community advocates/leaders involved in their treatment To explore the issues facing women with HIV and provide meaningful education-based support to respond to these needs To contribute towards an enhanced quality of life for women with HIV 4

5. Workshop objectives To discuss challenges that can be addressed through partnership between women living with HIV and their healthcare professional To explain the importance of an effective therapeutic relationship with your healthcare professional Provide practical advice on maximising the benefits of the therapeutic relationship for individualised care

6. Introduction Special considerations for women living with HIV The importance of the therapeutic relationship Discussion

7. Special considerations for women living with HIVAngelina Namiba

8. What are the issues facing women diagnosed with HIV?

9. How women experience HIV: the journey + Acceptance / moving on Starting treatment Disclosure (often avoided) Pregnancy, job loss, negative life events (at any stage) Improvement in emotional wellbeing Side effects Stigma, shame blame,rejection Stigma, shame blame,rejection Denial Depression(can continue) Diagnosis - optimal journey emotional disturbance and depression The journey is characterised by many emotional ups and downs and varies from woman to woman. It adheres to the classic grieving model The Planning Shop International Women Research, July 2008 9

10. The challenge of . . . diagnosis Denial Fear Disclosure Sorrow Grief Starting treatment and adherence Anger Acceptance Social and cultural circumstances

11. What does a woman living with HIV need from the therapeutic relationship?

12. The challenge of... disclosure Barriers . . . Blame, upsetting family Rejection, accusations of infidelity Abandonment Loss of economic support Violence (up to 60%)1 Stigma Discrimination Motivators . . . Sense of ethical responsibility Concern for partner's health Symptoms and severity of illness Need for social support Need to alleviate stress of non-disclosure To facilitate treatment, safe sex and HIV-prevention behaviour WHO. Gender inequalities and HIV 2008; WHO. HIV status disclosure to sexual partners: rates, barriers and outcome for women

13. Facilitating disclosure Discuss theneed to inform othersduring pre- and post-test counselling Addressmandatory disclosureand the role of the clinician Emphasize thepositive aspectsof disclosure

14. What are some of the issues that a woman faces when starting HIV treatment?

15. The challenge of starting treatment Barriers to overcome before initiating treatment1,2 Fear of side effects Lifestyle issues Lack of acceptance of diagnosis Low self-worth Lack of trust in clinician Communication problems Preference for alternative treatments

16. The challenge of . . . starting treatment Treatment adherence is critical to: CD4 count and viral load missed doses may allow the virus to replicate more rapidly and damage the immune system 1 Prevent ART resistance missed doses may encourage new drug-resistant strains of HIV to develop 2

17. How do you think we can be supported?

18. Individualizing care We must be considered in our social contexte.g. as a mother, a partner, a daughter, a caregiver (or all of the above)

19. Women also have social and cultural challenges

20. Social and cultural differences affect how women manage HIV Sex Power/control Violence Isolation Multi-tasking Language Faith Access Marginalized 20

21. Individualizing care HIV care should vary depending on the unique needs and personal circumstances of each woman . . .

22. Matching care to women’s needs • A little investment at the beginning of a woman’s care can have long lasting beneficial implications!

23. The importance of the therapeutic relationshipLorraine Sherr

24. In general, women have good experiences with their physicians and do not have a gender preference1 Most physicians believe they are empathetic toward their patients Successful patient–doctor partnerships

25. A good relationship is good for you Satisfaction1,2 Health outcomes3 Self-efficacy2 Belief in the usefulness of treatment2 Treatment adherence2,4,5 Improved patient self-care6 Pro-activity in healthcare decisions3 A patient-centred working alliance is associated with improved outcomes: . . . and helps women remain in care7 1. Levinson & Roter, 1995; 2. Fuertes et al, 2007; Gerbert et al. 1999; Schneider et al. 2004; Sherr et al. 2008; 6. Defining the patient-physician relationship for the 21° Century. 3rd Annual Disease Management Outcomes Summit. 2003; Mallinson et al. 2007

26. Why support the therapeutic relationship? Empower women to be active partners in their own healthcare Help women to cope with HIV-related challenges Support Positive relationship Trust Communication Compassion Respect

27. Health benefits of feeling “known as a person’’ Percent of patients (n=1743) • Patients “known as a person’’ by their HCP were more likely to receive ART, adhere to their ART, and have an undetectable viral load • They also reported higher quality-of-life, fewer missed appointments, more positive beliefs about therapy, less social stress and less use of drugs or alcohol Receiving HAART Adherent to HAART Undetectable HIV-RNA Beach MC et al. J Gen Intern Med 2006

28. Health benefits of feeling “known as a person’’ Percent of patients (n=1743) • Patients “known as a person’’ by their clinician were more likely to receive ART, adhere to their ART, and have an undetectable viral load • They also reported higher quality-of-life, fewer missed appointments, more positive beliefs about therapy, less social stress and less misuse of drugs or alcohol No Don’t know Yes Beach MC et al. J Gen Intern Med 2006

29. Good doctor-patient communication is associated with better health outcomes Clucas C et al. HIV Med 2011

30. Why might women be reluctant to ask their healthcare professional questions? Which questions do they find the most difficult to ask?

31. Potential barriers to a successful partnership Person issues • Understanding • Fears • Challenge of adhering • Negative feelings • Lack of confidence • Intimidation • Rapport failure Other issues • Lack of continuity of care • Institutional, cultural or language differences • New medical technologies • Government regulations, reimbursement and costs • Eligibility for treatment • Legal issues • Changing social norms

32. Seven principal elements to a successful patient-doctor relationship C O M P A S S I O N Communication Out-patient experience C A R E 7 Outcomes Decision-making In-patient hospital experience Integration/continuity Patient education Disease Management Outcomes Summit 2003

33. Understanding aspects and models of the patient–HCP relationship Instrumental • The technical aspects of care such as tests and examinations, prescribing treatments Expressive • Warmth and empathy in the approach to the patient–HCP relationship

34. Different types of relationships • Physician actively treats the patient, patient is passive • Patient seeks information and technical assistance • Physician formulates decisions which the patient must accept • Often not optimal for long-term success and satisfaction Active-Passive • Physician recommends and patient cooperates • “Doctor knows best" is supportive and non-authoritarian, yet is responsible for choosing the appropriate treatment • The patient, having lesser power, is expected to follow the recommendations of the physician Guidance-Cooperation • Physician and patient share responsibility for making decisions and planning the course of treatment • The patient and physician respect of each others expectations and values Mutual Participation 34

35. Valuing psychosocial issues in addition to ‘medical’ issues Women • Patients of these clinicians were more likely to discuss their feelings, express positive emotions and take a partnership role, and less likely to show anger or anxiety Question and elicit information Raise psychosocial as well as medical issues Participate in decision making Clinician • Clinicians who considered psychosocial aspects of a person’s life as important were more likely to express reassurance, empathy or concern and use more open-ended questions than those who focused only on medical aspects Levinson & Roter. J Gen Intern Med 1995

36. Empowering women to be active participants in their own care The preferred model of medical care has evolved towards a partnership or alliance approach Women are encouraged to:1–4 Question and elicit information from your clinican Raise psychosocial as well as medical issues Participate in decision making Take responsibility for their well-being 1. Butow P et al. J Clin Oncol 2004; 22(21): 4401–4409 2. Kidd J et al. Patient Educ Couns 2004; 52: 107–112 3. Haywood K et al. Patient Educ Couns 2006; 63: 12–23 4. Levinson & Roter. J Gen Intern Med 1995; 10: 375–379

37. What can women and their clinicians do to ensure that they make the most out of the therapeutic relationship?

38. Asking questions Enabling Questions Women Clinician Prepare and prioritise questions before your consultation Write your questions down Note down key points during your consultation

39. Build a good relationship • Make the most of it

40. Thank you for your attention