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Supporting the
patient–HCP
relationship
Women for Positive Action is supported by a grant from Abbott
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
2
Women for Positive Action is supported by a grant from Abbott
Introduction
Women for Positive Action is supported by a grant from Abbott
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
4
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The importance of the
patient-HCP relationship
Women for Positive Action is supported by a grant from Abbott
Why support the patient–HCP
relationship?
Help women
to cope with HIVrelated
challenges
Empower women
to be active partners
in their own healthcare
\
Support
Positive relationship
between patient and HCP
Open, two-way,
effective
communication
Trust
Respect
Compassion
6
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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
7
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Benefits of an effective partnership
between patient and HCP
A patient-centred working alliance between patient
and HCP is associated with improved patient:
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
. . . and helps patients remain in care7
8
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Health benefits of feeling “known as
a person’’ by HCPs
(n=1743)
Percent of patients
80
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
70
60
50
40
30
20
10
0
No
Receiving HAART
Don't know
Adherent to HAART
Yes
Undetectable HIV-RNA
9
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Beach MC et al. J Gen Intern Med 2006
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
•
•
•
•
•
•
•
10
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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
Seven principal elements to a
successful patient-doctor
relationship
Communication
Out-patient
experience
Outcomes
Decisionmaking
7
Integration/
continuity
In-patient
hospital
experience
Patient
education
11
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Disease Management Outcomes Summit 2003
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
12
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•
Self-care programme
•
Physician-patient
knowledge differences
•
Patient-tailored education
•
Patient responsibility for
managing their condition
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-ofhours appointments
•
•
•
•
•
•
13
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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
Achieving excellence: Integration,
decision making and outcomes
Decision
making
Integration
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
Personal, religious,
economic and
psychosocial factors
considered
• Patient participation
in the decision
• Patient awareness of
all therapeutic
options
• Disclosure of
treatment adherence
14
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•
Pre-discussion of
clinical practice
outcomes
• Understanding of
patient-centred
outcomes as valid
objectives
Special considerations
for women living with
HIV
Women for Positive Action is supported by a grant from Abbott
Social and cultural differences affect
how women manage HIV
More limited
power/control to
practice low-risk
sexual behavior
Simultaneous
management of
medications, jobs, families
and other medical and
gynecologic problems is
challenging
Reduced access to
healthcare, education
and economic
resources
More limited scope to
negotiate frequency
of and nature of
sexual interactions
Migrant women, in
particular, are often
isolated and lack
social support
Impact of religious
and cultural beliefs on
women
16
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Violence may
increase a woman’s
vulnerability to HIV
Language or cultural
barriers may add to
lack of support
May come from ‘hard
to reach’ communities
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
17
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Valuing psychosocial issues in
addition to ‘medical’ issues
HCPs
•
Patients
•
Physicians who considered
psychosocial aspects of a
person’s life as important
were more likely to express
reassurance, empathy or
concern and use more openended questions than those
who focussed only on
medical aspects
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
18
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Levinson & Roter. J Gen Intern Med 1995
Individualizing care
Socio-economic
class
Age
Family issues
Sexual issues
Medical history
Pregnancy
Stage of
HIV journey
HIV care should vary
Support
depending on the unique needs
and personal circumstances
of each woman . . .
Immigration
Violence
or sexual abuse
Culture
or religion
Child-bearing
potential
Acceptance
of diagnosis
19
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Co-morbid problems
(e.g. alcoholism, drug use,
depression)
Language and
understanding
Individualizing care
. . . and consider women in their
social context
e.g. as a mother, a partner,
a daughter, a caregiver
20
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Matching care to patient needs:
examples
•
•
•
•
•
•
•
•
•
•
Cultural stigma of HIV
Language barriers
Distracted if immigrant
status unconfirmed
Immigrant
Adherence usually a
difficult issue
Support/remain positive
Preacceptance
of diagnosis
Difficulty in educating/
understanding
Lower socioeconomic class
Adherence usually good
Choose ART shown to
be safe and effective
in pregnancy to limit risks
Pregnant
Focus on contraception
Use PI if low confidence
in contraception
Possibility of
pregnancy
VS
Nonimmigrant
VS
Postacceptance
of diagnosis
VS
Higher socioeconomic
class
•
•
•
Adherence improves/start
treatment
• Educate and encourage
• Look for ways to stabilise
life if chaotic
•
•
•
VS
Not pregnant
VS
Sure of
contraception
or not WOCB
Potential for shared culture
with physician
Fewer language barriers
•
•
Typically more educated
Easier to reach acceptance
Treat according to protocol
Consider as a WOCB
– see below
Fewer concerns regarding
unplanned pregnancy
21
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WOCB = woman of child-bearing potential; PI = protease inhibitor
How women experience HIV:
the patient journey
+
Acceptance /
moving on
Starting
treatment
Disclosure
Improvement in
emotional wellbeing
(often avoided)
Pregnancy, job
loss, negative life
events
If rejected
by loved
ones
(at any stage)
Denial
Diagnosis
-
If rejected
by
partner
Side
effects
Depression
(can continue)
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
The challenge of . . . diagnosis
Grief
Denial
Sorrow
Fear
Anger
23
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Acceptance
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 of
antenatal care
AND
pregnancy
should be discussed
in standard HIV care
24
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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?
25
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Do I have to have a caesarean?
The challenge of . . . disclosure
Barriers . . .
Motivators . . .
Blame, upsetting family
Sense of ethical responsibility
Rejection, accusations of infidelity
Concern for partner's health
Abandonment
Symptoms and severity of illness
Loss of economic support
Need for social support
Violence (up to 60%)1
Need to alleviate stress of
non-disclosure
Stigma
To facilitate treatment, safe sex
and HIV-prevention behaviour
Discrimination
26
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WHO. Gender inequalities and HIV 2008;
WHO. HIV status disclosure to sexual partners: rates,
barriers and outcome for women
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
27
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The challenge of . . . starting treatment
Treatment adherence is critical to:
CD4 count and viral load
1
missed doses may allow the
virus to replicate more
rapidly and damage the
immune system
Prevent ART resistance
2
missed doses may encourage
new drug-resistant strains of
HIV to develop
28
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The challenge of starting treatment
Barriers to overcome
before initiating treatment1,2
Fear of side
effects
Lifestyle
issues
Lack of
acceptance
of diagnosis
Lack of trust
in HCP
Low selfworth
Preference
for
alternative
treatments
29
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Communication
problems
Maximising the
benefits of the patient–
HCP relationship
Women for Positive Action is supported by a grant from Abbott
Facilitating treatment adherence
I’ve not got
time to visit
the doctor
There are too
many pills
I feel fine – I don’t
need to renew my
prescription
I don’t know
when I’m meant
to take each pill
I forgot to take
my tablets on
holiday
The drugs made me
feel sick so I stopped
taking them
31
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I don’t want to
take any
medications
I’m afraid that the
treatments will
change my body
shape
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
32
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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
33
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Promoting change in behaviour
Directing
•
HCP:
•
•
Guiding
•
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
Informs and presents
single solution
Outcome:
• Patient typically
resists
• HCP may see patient
as unmotivated or in
denial
34
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Rollnick S et al. BMJ 2005
Understanding aspects and models
of the patient–HCP relationship
Instrumental
•
Expressive
•
•
•
•
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
•
•
•
Physician recommends and
patient cooperates
“Doctor knows best" is
supportive and nonauthoritarian, yet is
responsible for choosing
the appropriate treatment
The patient, having lesser
power, is expected to follow
the recommendations of the
physician
35
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Warmth and empathy in the
approach to the patient–HCP
relationship
GuidanceCooperation
Active-Passive
•
•
The technical aspects of care such
as tests and examinations,
prescribing treatments
Mutual Participation
•
•
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
Case studies
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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
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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
38
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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”
As well as managing her treatment, what
alternatives should be considered?
39
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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
40
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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
41
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Thank you for your
attention
Any questions?
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