Supporting the patient–HCP relationship

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


Introduction


4

Successful patient–HCP 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

• Supporting a successful and therapeutic patient-HCP relationship is important


The importance of the patient-HCP

relationship


6

Why support the patient–HCP relationship?

Positive relationship between patient and HCP

Empower women to be active partners

in their own healthcare

Help women to cope with HIV-related challenges

Support

Trust

\

Respect Compassion

Open, two-way, effective

communication


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


8

Benefits of an effective partnership between patient and HCP

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 between patient and HCP is associated with improved

patient:

. . . and helps patients remain in care7


9

Health benefits of feeling “known as a person’’ by HCPs

0

10

20

30

40

50

60

70

80

No Don't know Yes

Receiving HAART Adherent to HAART Undetectable HIV-RNA

Beach MC et al. J Gen Intern Med 2006

Perc

ent

of

pati

ents

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)


10

• 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

• 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

Potential barriers to a successful patient–HCP partnership

Person issues1 Other issues1


11

Seven principal elements to a successful patient-doctor relationship

7

Communication

Out-patient

experience

In-patient hospital

experience

Patient education

Integration/

continuity

Decision-making

Outcomes

Disease Management Outcomes Summit 2003Women for Positive Action is supported by a grant from Abbott

12

Achieving excellence in communication & education

• Self-care programme• Physician-patient

knowledge differences• Patient-tailored

education• Patient responsibility

for managing their condition

• 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

Communication Education


13

Achieving excellence: clinic/office and in-hospital experience

• 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

• 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

Out-patient clinic In-Hospital


14

Achieving excellence: Integration, decision making and outcomes

• Personal, religious, economic and psychosocial factors considered

• Patient participation in the decision

• Patient awareness of all therapeutic options

• Disclosure of treatment adherence

• 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 Decision making

• Pre-discussion of clinical practice outcomes

• Understanding of patient-centred outcomes as valid objectives

Outcomes


Special considerations for women living with

HIV


16

Impact of religious and cultural beliefs

on womenMay come from ‘hard to reach’ communities

Simultaneous management of

medications, jobs, families and other

medical and gynecologic problems is

challenging

Migrant women, in particular, are

often isolated and lack social support

Reduced access to healthcare,

education and economic resources

Language or cultural barriers

may add to lack of support

More limited scope to negotiate

frequency of and nature of sexual

interactions

Violence may increase a woman’s

vulnerability to HIV

More limited power/control to practice low-risk sexual behavior

Social and cultural differences affect how women manage HIV


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


18

Valuing psychosocial issues in addition to ‘medical’ issues

• 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

HCPs

• 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

Patients

Question and elicit information

Raise psychosocial as well as medical issues

Participate in decision making

Levinson & Roter. J Gen Intern Med 1995Women for Positive Action is supported by a grant from Abbott

19

Individualizing care

HIV care should vary depending on the unique needs

and personal circumstances of each woman . . .

Culture or religion

ImmigrationChild-bearing

potential Co-morbid problems (e.g. alcoholism, drug use,

depression)

Family issuesMedical history

Violence or sexual abuse

Sexual issues

Support

Stage of HIV journey

Acceptance of diagnosis

Language and understanding

Pregnancy

Socio-economic classAge


20

Individualizing care

. . . and consider women in their social context

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


21

• Adherence improves/starttreatment

• Educate and encourage• Look for ways to stabilise

life if chaotic

• Typically more educated• Easier to reach acceptance

• Treat according to protocol• Consider as a WOCB

– see below

• Fewer concerns regardingunplanned pregnancy

• Potential for shared culture with physician

• Fewer language barriers

• Adherence usually a difficult issue

• Support/remain positive

• Difficulty in educating/ understanding

• Adherence usually good• Choose ART shown to

be safe and effectivein pregnancy to limit risks

• Focus on contraception• Use PI if low confidence

in contraception

• Cultural stigma of HIV• Language barriers• Distracted if immigrant

status unconfirmed

Matching care to patient needs: examples

ImmigrantNon-

immigrantVSVS

Pre-acceptance of diagnosis

Post-acceptanceof diagnosis

Lower socio-economic class

Higher socio-economic

class

Pregnant Not pregnant

Possibility ofpregnancy

Sure ofcontraceptionor not WOCB

VSVS

VSVS

VSVS

VSVS

WOCB = woman of child-bearing potential; PI = protease inhibitorWomen for Positive Action is supported by a grant from Abbott

22

Denial

Disclosure(often avoided)

Depression(can continue)

-

+

optimal journeyemotional disturbance and depression

If rejected by

partner

If rejected by loved

ones

Pregnancy, job loss, negative life

events(at any stage)

Side effects

Starting treatment

Diagnosis

Acceptance / moving on

The Planning Shop International Women Research, July 2008

How women experience HIV: the patient 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 model

23

Acceptance

The challenge of . . . diagnosis

Sorrow

FearAnger

GriefDenial


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 AND pregnancy should be discussedin standard HIV care


25

Considerations surrounding pregnancy

Will I survive to see my children grow up?

What is the risk that I will infect my partner?

Will pregnancy make my HIV worse?

Could my HIV status make my baby abnormal?

What is the risk of my baby being infected?

Will the treatment harm me or my baby?

Do I have to have a caesarean?

How do I get pregnant without infecting my partner?

?

Will my healthcare workers treat me differently?

Should I bottle- or breastfeed my baby?

What happens if my baby is HIV+? When will I know?


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

counselling

Address mandatory disclosure and the role of the HCP

Emphasize the positive aspects of disclosure


28

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

2Women for Positive Action is supported by a grant from Abbott

29

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

HCP

Lack of acceptanc

e of diagnosis

Fear of side

effects


Maximising the benefits of the

patient–HCP relationship


31

Facilitating treatment adherence

I don’t know when I’m

meant to take each pill

The drugs made me feel sick so I stopped taking

them

There are too many pills

I feel fine – I don’t need to

renew my prescription

I forgot to take my

tablets on holiday

I’ve not got time to visit the doctor

I don’t want to take any medications

I’m afraid that the treatments will change my

body shape


32

Success factors in treatment adherence

Adherence to treatment is complex, factors that can reinforce adherence include:1

Older age

Discussing psychosocial and medical issues

Patients participating in decision making

Patients taking responsibility for their well-being

Patients who ask questions of their HCPs

Non-migrant

Sherr L et al. AIDS Care 2008; Schneider J et al. J Gen Intern Med 2004


33

Facilitating treatment adherence

Measures to maximize 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


34

Promoting change in behaviour

• 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

• HCP:• Informs and

presents single solution

• Outcome:• Patient typically

resists • HCP may see

patient as unmotivated or in denial

Directing Guiding

Rollnick S et al. BMJ 2005Women for Positive Action is supported by a grant from Abbott

35

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

• 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

• 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 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


Case studies


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

37

As well as managing her diagnosis and potential pregnancy, what other issues

should be considered?


38

Issues to consider

• 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


39

Case study: African migrant living in Europe/North America

• 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”

39

As well as managing her treatment, what alternatives should be

considered?Women for Positive Action is supported by a grant from Abbott

40

Issues to consider

• 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


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


Thank you for your attention

Any questions?


Documents

Supporting the patient–HCP relationship