Supporting the patient–HCP relationship

1. Supporting the patient–HCP relationship Women for Positive Action is supported by a grant from Abbott

2. Contents Introduction The importance of the patient-HCP relationship Special considerations for women living with HIV Maximising the benefits of the patient-HCP relationship Case studies Women for Positive Action is supported by a grant from Abbott

3. Introduction Women for Positive Action is supported by a grant from Abbott

4. 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 Supporting a successful and therapeutic patient-HCP relationship is important Successful patient–HCP partnerships Women for Positive Action is supported by a grant from Abbott

5. The importance of the patient-HCP relationship Women for Positive Action is supported by a grant from Abbott

6. Why support the patient–HCP relationship? Empower women to be active partners in their own healthcare Help women to cope with HIV-related challenges \ Support Positive relationshipbetween patient and HCP Trust Open, two-way, effective communication Compassion Respect Women for Positive Action is supported by a grant from Abbott

7. 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 HCPs Raise psychosocial as well as medical issues Participate in decision making Take responsibility for their well-being Women for Positive Action is supported by a grant from Abbott

8. Benefits of an effective partnership between patient and HCP 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 Apatient-centred working alliance between patient and HCP is associated withimprovedpatient: . . . and helps patients remain in care7 Women for Positive Action is supported by a grant from Abbott

9. Health benefits of feeling “known as a person’’ by HCPs 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 misuse of drugs or alcohol (n=1743) Percent of patients Women for Positive Action is supported by a grant from Abbott Beach MC et al. J Gen Intern Med 2006

10. Potential barriers to a successful patient–HCP partnership Person issues1 Other issues1 • Difficulty understanding information on HIV and its treatment • Fear of starting treatment • Not adhering to treatment • Negative feelings about self or treatment • Lack of confidence to ask questions, not wanting to ‘contradict’ others • Failure to develop appropriate relationship or rapport due to e.g. cultural, personality, age or other differences • Lack of continuity of care • Institutional, cultural or language differences • New medical technologies • Government regulations, reimbursement and cost issues2 • Eligibility for treatment • Legal issues • Changing social norms2 Women for Positive Action is supported by a grant from Abbott

11. Seven principal elements to a successful patient-doctor relationship Communication Out-patient experience 7 Outcomes Decision-making In-patient hospital experience Integration/continuity Patient education Women for Positive Action is supported by a grant from Abbott Disease Management Outcomes Summit 2003

12. Achieving excellence in communication & education Communication Education • Patients know their symptoms • Proactive discussion & patient feedback • Non-medical patient information • Effects of gender, age, race and religion on care • A flexible approach to communication • Self-care programme • Physician-patient knowledge differences • Patient-tailored education • Patient responsibility for managing their condition Women for Positive Action is supported by a grant from Abbott

13. Achieving excellence: clinic/office and in-hospital experience Out-patient clinic In-Hospital • Timely and flexible access to appointments • Patient and HCP prepared for visits • Written office process and policy information • Polite and professional staff • Flexible access, e.g. out-of-hours appointments • Personalised care • Clearly defined physician roles • Effective communication • Set patient expectations • Communication with family and caregivers • Discharge planning • Help ensure emergency department is used for true emergencies Women for Positive Action is supported by a grant from Abbott

14. Achieving excellence: Integration, decision making and outcomes • Pre-discussion of clinical practice outcomes • Understanding of patient-centred outcomes as valid objectives Outcomes • Patient progress facilitated through the healthcare system • Clinical results shared with appropriate members of the health care team • Patients provided with all test results Integration • Personal, religious, economic and psychosocial factors considered • Patient participation in the decision • Patient awareness of all therapeutic options • Disclosure of treatment adherence Decision making Women for Positive Action is supported by a grant from Abbott

15. Special considerations for women living with HIV Women for Positive Action is supported by a grant from Abbott

16. Social and cultural differences affect how women manage HIV More limited scope to negotiate frequency of and nature of sexual interactions More limited power/control to practice low-risk sexual behavior Violence may increase a woman’s vulnerability to HIV Migrant women, in particular, are often isolated and lack social support Simultaneous management of medications, jobs, families and other medical and gynecologic problems is challenging Language or cultural barriers may add to lack of support Impact of religious and cultural beliefs on women Reduced access to healthcare, education and economic resources May come from ‘hard to reach’ communities 16 Women for Positive Action is supported by a grant from Abbott

17. Enhancing provision of information to HIV-positive women • HCPs can underestimate the need that patients have for information • HCPs may overestimate value and accessibility of information that is given1 • Information should be tailored to women’s issues and be culturally sensitive Women for Positive Action is supported by a grant from Abbott

18. Valuing psychosocial issues in addition to ‘medical’ issues Patients • Patients of these physicians 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 HCPs • Physicians 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 focussed only on medical aspects Women for Positive Action is supported by a grant from Abbott Levinson & Roter. J Gen Intern Med 1995

19. Individualizing care Socio-economic class Age Family issues Sexual issues Medical history HIV care should vary depending on the unique needs and personal circumstances of each woman . . . Pregnancy Support Stage of HIV journey Immigration Child-bearing potential Violence or sexual abuse Co-morbid problems (e.g. alcoholism, drug use, depression) Acceptance of diagnosis Culture or religion Language and understanding Women for Positive Action is supported by a grant from Abbott

20. Individualizing care . . . and consider women in their social contexte.g. as a mother, a partner, a daughter, a caregiver Women for Positive Action is supported by a grant from Abbott

21. Matching care to patient needs: examples Immigrant Non- immigrant • Cultural stigma of HIV • Language barriers • Distracted if immigrant status unconfirmed • Potential for shared culture with physician • Fewer language barriers VS Pre-acceptance of diagnosis Post-acceptanceof diagnosis • Adherence usually a difficult issue • Support/remain positive • Adherence improves/starttreatment • Educate and encourage • Look for ways to stabilise life if chaotic VS Lower socio- economic class Higher socio- economic class • Difficulty in educating/ understanding • Typically more educated • Easier to reach acceptance VS Pregnant Not pregnant • Adherence usually good • Choose ART shown to be safe and effectivein pregnancy to limit risks • Treat according to protocol • Consider as a WOCB – see below VS Possibility ofpregnancy Sure ofcontraception or not WOCB • Focus on contraception • Use PI if low confidence in contraception • Fewer concerns regardingunplanned pregnancy VS WOCB = woman of child-bearing potential; PI = protease inhibitor Women for Positive Action is supported by a grant from Abbott

22. How women experience HIV: the patient journey + Acceptance / moving on Starting treatment Disclosure (often avoided) Pregnancy, job loss, negative life events (at any stage) Improvement in emotional wellbeing Side effects If rejected by loved ones If rejected bypartner 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 22

23. The challenge of . . . diagnosis Grief Denial Sorrow Fear Anger Acceptance Women for Positive Action is supported by a grant from Abbott

24. The challenge of . . . pregnancy • The possibility of pregnancy is an important consideration for all HIV-positive women of child-bearing potential • HIV should be discussed as part ofantenatal care ANDpregnancy should be discussedin standard HIV care Women for Positive Action is supported by a grant from Abbott

25. Considerations surrounding pregnancy What happens if my baby is HIV+? When will I know? How do I get pregnant without infecting my partner? Will my healthcare workers treat me differently? Could my HIV status make my baby abnormal? What is the risk that I will infect my partner? ? What is the risk of my baby being infected? Will I survive to see my children grow up? Will the treatment harm me or my baby? Should I bottle- or breastfeed my baby? Will pregnancy make my HIV worse? Do I have to have a caesarean? Women for Positive Action is supported by a grant from Abbott

26. 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 Women for Positive Action is supported by a grant from Abbott

27. Facilitating disclosure Discuss theneed to inform othersduring pre- and post-test counselling Addressmandatory disclosureand the role of the HCP Emphasize thepositive aspectsof disclosure Women for Positive Action is supported by a grant from Abbott

28. 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 Women for Positive Action is supported by a grant from Abbott

29. 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 HCP Communication problems Preference for alternative treatments Women for Positive Action is supported by a grant from Abbott

30. Maximising the benefits of the patient–HCP relationship Women for Positive Action is supported by a grant from Abbott

31. Facilitating treatment adherence There are too many pills I’ve not got time to visit the doctor I feel fine – I don’t need to renew my prescription I don’t want to take any medications I don’t know when I’m meant to take each pill I forgot to take my tablets on holiday I’m afraid that the treatments will change my body shape The drugs made me feel sick so I stopped taking them Women for Positive Action is supported by a grant from Abbott

32. Success factors in treatment adherence Adherence to treatment is complex, factors that can reinforce adherence include:1 Older age Non-migrant Discussing psychosocial and medical issues Patients participating in decision making Patients taking responsibility for their well-being Patients who ask questions of their HCPs Sherr L et al. AIDS Care 2008; Schneider J et al. J Gen Intern Med 2004 Women for Positive Action is supported by a grant from Abbott

33. Facilitating treatment adherence Ensure patients are knowledgeable about treatment Reinforce the value of treatment Engage patient in management decisions Select a regimen most likely to be adhered to Provide social and psychological support Be vigilant for and treat depression and other mental disorders Offer extra support during the early months Regular long-term follow-up to monitor / reinforce adherence Measures to maximize adherence Women for Positive Action is supported by a grant from Abbott

34. Promoting change in behaviour Directing Guiding • HCP: • Informs and presents single solution • Outcome: • Patient typically resists • HCP may see patient as unmotivated or in denial • HCP: • Informs and asks patient how they might change • Uses reflective listening to explore solutions • Outcome: • Engages patients to identify and take responsibility for change Rollnick S et al. BMJ 2005 Women for Positive Action is supported by a grant from Abbott

35. Understanding aspects and models of the patient–HCP relationship • Differential power in the relationship • 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 Instrumental Expressive • The technical aspects of care such as tests and examinations, prescribing treatments • Warmth and empathy in the approach to the patient–HCP relationship Women for Positive Action is supported by a grant from Abbott

36. Case studies Women for Positive Action is supported by a grant from Abbott

37. Case study: Discordant HIV test result 33 year old woman and male partner undertake HIV screening before stopping condoms and planning a family Woman screens HIV+ while partner screens HIV- Woman refuses to inform partner of her HIV+ result for fear of abandonment As well as managing her diagnosis and potential pregnancy, what other issues should be considered? 37 Women for Positive Action is supported by a grant from Abbott

38. Issues to consider 38 • Disclosure and confidentiality within the patient-HCP relationship • Many national guidelines preserve confidentiality to patients except in special circumstances • Pre- and post-test counselling should openly discuss HIV+ outcome and propose how to prepare for ‘bad news’ • Disclosure without the woman’s consent may be mandatory, but may have severe negative consequences for trust within the patient-doctor relationship and continuity of care Women for Positive Action is supported by a grant from Abbott

39. Case study: African migrant living in Europe/North America As well as managing her treatment, what alternatives should be considered? 39 Stable on ART Living in shared state-provided accommodation Cares about body image and disclosure Planning to breastfeed Believes “God would look after the baby” Women for Positive Action is supported by a grant from Abbott

40. Issues to consider 40 • Social support, duty of care to mother and baby • Separation of mother and child should be a last resort • Address patient’s housing situation • Discuss her fears over body image and disclosure • She may be psychologically vulnerable and believe that by avoiding the side-effects of treatment she taking responsibility for a new life • Consider changing treatment regimen • Respect spiritual beliefs and seek community support, e.g. community faith leaders • This may change her opinion about treating and breastfeeding her baby Women for Positive Action is supported by a grant from Abbott

41. Respect of beliefs Wherever possible it is more effective to work ‘with’ beliefs, not ‘against’ them Use of faith leaders and ‘stories’ can improve engagement within the patient-HCP relationship Women for Positive Action is supported by a grant from Abbott

42. Thank you for your attention Any questions? Women for Positive Action is supported by a grant from Abbott