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

Women for Positive Action

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Angelina Namiba, UK

Lorraine Sherr, UK

Women for Positive Action

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www.womenforpositiveaction.org Contact us: WFPA@litmus-mme.com

Twitter: @WFPA_HIV

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

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

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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 professionalProvide practical advice on

maximising the benefits of the therapeutic relationship for

individualised care

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Introduction

Special considerations for women living with HIV

The importance of the therapeutic relationship

Discussion

Special considerations for

women living with HIV

Angelina Namiba

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What are the issues facing women diagnosed with HIV?

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Denial

Disclosure(often avoided)

Depression(can continue)

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+

optimal journeyemotional disturbance and depression

Stigma, shame blame,

rejection

Stigma, shame blame,

rejection

Pregnancy, job loss, negative life

events(at any stage)

Side effects

Starting treatment

Diagnosis

Acceptance / moving on

How women experience HIV: the journey

Imp

rovem

en

t in

em

oti

on

al w

ellb

ein

g

The journey is characterised by many emotional ups and downs and varies from woman to woman. It adheres to the

classic grieving modelThe Planning Shop International Women Research, July 2008

The challenge of . . . diagnosis

Social and cultural

circumstances

Sorrow

AcceptanceAnger

Starting treatment

and adherence

Grief

DisclosureDenial Fear

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What does a woman living with HIVneed from the therapeutic relationship?

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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

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Facilitating disclosure

Discuss the need to inform others during pre- and post-test

counselling

Address mandatory disclosure and the role of the clinician

Emphasize the positive aspects of disclosure

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

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The challenge of starting treatment

Barriers to overcome before initiating treatment1,2

Preference for

alternative treatments

Communication problems

Low self-worth

Lifestyle issues

Lack of trust in clinician

Lack of acceptanc

e of diagnosis

Fear of side

effects

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CD4 count and viral load

missed doses may allow the virus to replicate more rapidly and damage the

immune system

The challenge of . . . starting treatment

Treatment adherence is critical to:

1Prevent ART

resistance missed doses may encourage new drug-

resistant strains of HIV to develop

2

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How do you think we can be supported?

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Individualizing care

We must be considered in our social context

e.g. as a mother, a partner, a daughter, a caregiver

(or all of the above)

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Women also have social and cultural challenges

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FaithMarginalized

Multi-tasking Isolation

Access

Language

SexViolencePower/control

Social and cultural differences affect how women manage HIV

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Individualizing care

HIV care should vary depending on the unique needs

and personal circumstances of each woman . . .

Matching care to women’s needs

• A little investment at the beginning of a woman’s care can have long lasting beneficial implications!

The importance of the

therapeutic relationship

Lorraine Sherr

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Successful patient–doctor partnerships

• 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

A good relationship is good for you

Pro-activity in healthcare decisions3

Treatment adherence2,4,5 Improved patient self-care6

Belief in the usefulness of treatment2

Health outcomes3 Self-efficacy2

Satisfaction1,2

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

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Why support the therapeutic relationship?

Positive relationship

Empower women to be active partners

in their own healthcare

Help women to cope with HIV-related challenges

Support

Trust

Respect Compassion

Communication

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Health benefits of feeling “known as a person’’

0

10

20

30

40

50

60

70

80

No Don't know Yes

Beach MC et al. J Gen Intern Med 2006

Percent of patients (n=1743)

Receiving HAART

Adherent to HAART

Undetectable HIV-RNA

• 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

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Health benefits of feeling “known as a person’’

Beach MC et al. J Gen Intern Med 2006

• 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

0

10

20

30

40

50

60

70

80

Receiving HAART

Adherent to Haart

Undetectable HIV-RNA

No

Don’t know

Yes

Percent of patients (n=1743)

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Good doctor-patient communication is associated with better health outcomes

Clucas C et al. HIV Med 2011

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Why might women be reluctant to ask their healthcare

professional questions?

Which questions do they find the most difficult to ask?

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• 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

• Understanding

• Fears

• Challenge of adhering

• Negative feelings

• Lack of confidence

• Intimidation

• Rapport failure

Potential barriers to a successful partnership

Person issues Other issues

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Seven principal elements to a successful patient-doctor relationship

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Communication

Out-patient

experience

In-patient hospital

experience

Patient education

Integration/

continuity

Decision-making

Outcomes

Disease Management Outcomes Summit 2003

CARE

COMPASSION

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Understanding aspects and models of the patient–HCP relationship

• Warmth and empathy in the approach to the patient–HCP relationship

• The technical aspects of care such as tests and examinations, prescribing treatments

Instrumental

Expressive

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• 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

• 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 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

Different types of relationships

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Valuing psychosocial issues in addition to ‘medical’ issues

• 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

Clinician

• 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

Women

Question and elicit information

Raise psychosocial as well as medical issues

Participate in decision making

Levinson & Roter. J Gen Intern Med 1995

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): 4401–44092. Kidd J et al. Patient Educ Couns 2004; 52: 107–1123. Haywood K et al. Patient Educ Couns 2006; 63: 12–234. Levinson & Roter. J Gen Intern Med 1995; 10: 375–379

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What can women and their clinicians do to ensure that they make the most

out of the therapeutic relationship?

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Asking questions

Enabling Questions

Prepare and prioritise questions before your consultation

Write your questions down

Note down key points during your consultation

WomenClinician

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• Build a good relationship• Make the most of it

Thank you for your attention