Transcript slide kit - Women for Positive Action

Emotional wellbeing of
women living with HIV
Women for Positive Action is supported by a grant from Abbott
Contents
Introduction and evidence base
Emotional challenges and triggers
Depression
Suicide, trauma, PTSD
Stigma
Psychosexual wellbeing
Parenthood, pregnancy and menopause
Treatment
Case studies
2
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Introduction and
evidence base
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Introduction
•
HIV infection can be both:
~ Chronic
~ Acute and life-threatening
•
HIV is associated with significant ‘emotional health’
challenges
Adjusting to
treatment and
living with HIV
Diagnosis
and coping
Care and
relationships
4
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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
5
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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
Positive emotional health
•
Positive emotional health and wellbeing among women living
with HIV promotes:
~ coping with diagnosis/HIV status
~ adjusting lifestyle to suit treatment
~ resilience to stigma/disease
•
Studies have shown that counselling and cognitive-behavioural
interventions (both group and one-to-one) contribute to a
reduction in distress and an increase in overall quality of life1
•
Counselling has also been shown to be very effective in
promoting positive emotional health and wellbeing and also
reducing HIV risk behaviours2
•
Peer support and mentoring is useful for many women,
particularly those in whom there may be cultural and social
barriers to medical counselling
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Emotional health in women with HIV
•
Globally women account for ~50% of HIV
infections
• Lack of data on the impact of HIV on
women
~ Particularly psychosocial/emotional health
issues
•
Historically research has focussed on:
~ Men, in particular men who have sex with men
~ Intravenous substance users
•
Limited studies and surveys have revealed
some interesting gender differences1
7
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Published studies of the impact of
HIV on emotional health of women
Author
Study population
Findings
Campos et al
2008
219 men, 167
women in Brazil
Women scored lower in all QOL domains, and had more
symptoms of depression/anxiety than men
Chandra et al
2009
109 adults with
HIV
Women had lower QOL facets of positive feelings,
sexual activity, financial resources
Wisniewski et
al 2005
61 adults with and
without HIV
Women had more depressive symptoms and lower QOL
than men
Joseph et al
2004
30 women with
HIV
Majority were primary caregivers. Suffer problems with
financial issues, child care and support, help-seeking,
sexual interactions and experience gender discriminatory
and inadequate care
Summers et al
2004
93 adults with HIV
Bereaved women had intensified bereavement
responses, greater generalized anxiety disorder,
elevated thoughts of suicide
Te Vaarwerk
et al 2001
78 European
women with HIV
High levels of distress and low HRQOL, especially if
drug users
8
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Emotional challenges
and triggers
Women for Positive Action is supported by a grant from Abbott
HIV often has mental and emotional
consequences
Parenting,
pregnancy,
children, carer
resposibilities
Relationships,
independence,
violence
Quality of life
Coping,
adjustment,
responding to
treatment
Diagnosisrelated trauma
Challenges
for HIV-positive
women
Stigma-related
stresses, fear,
secrecy
Disclosurerelated
stresses
Depression,
suicidal
thoughts /acts,
emotional
stress
Grief, loss and
guilt
Ageing
and the
menopause
Body image
problems
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Risk
behaviours
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
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Emotional triggers in HIV
Emotional trigger
Cause of emotional stress
Depression and
anxiety
• The impact of the infection on a woman's life, illness adaptation
• Fear of death, unknown future, relationship challenges
• Medication side effects
HIV and associated
illness
• HIV symptoms
• Cognitive impairment and/or HIV dementia (in more advanced HIV)
• Other illnesses
Alcohol and
substance use
• Both are independently associated with HIV and psychosocial
stresses
• Burden of treatment
• Side effects such as fat distribution, weight, appearance and CNS
ART and side effects
symptoms can impact on mood and psychiatric wellbeing, in
particular conception planning, self-esteem and body image
• CNS side effects such as dysphoria and nightmares need to be
discussed in with the patient prior to commencing specific ART
regimens2
12
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Specific triggers for emotional
disturbance in HIV
Emotional trigger
Cause of emotional stress
• Stigma and discrimination
• Community issues e.g. housing, poverty, religious beliefs,
Social difficulties
Diagnosis
language and culture
• HIV impact on relationships
• Unemployment/economic challenges, fear of disclosure at
workplace
• Delayed diagnosis
• Coinciding with child’s diagnosis, pregnancy, partner
illness/death
Vulnerable populations
(esp migrant women)
• Traumatic past events
• Adjustment to a new culture
Isolation
• e.g. lack of support networks
• e.g. stigma of HIV
• Linked with domestic violence
Cycles of disturbance
• Fear of stigma – non-disclosure – loss of support – depression
13
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Range of emotional health issues
associated with HIV
•
•
Depression
• Anxiety
• Coping problems
• Suicidal thoughts and
actions
• Trauma
• Post-traumatic stress
disorder (PTSD)
• Neuro-cognitive
impairment
Stigma
• Psychosexual
problems
• Relationship issues
• Pregnancy
• Menopause
• Body image
• Confidence
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Depression
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Vulnerability of HIV-positive women
to depressive symptoms
• 30–60% of women with HIV in the community and
clinic samples report depression1
• 17% higher likelihood of acute stress disorder among
women compared with men2
• 34% of women diagnosed with depression compared
with 29% of men3
• 54% HIV-related mortality rate for women with chronic
depressive symptoms1 compared with little or no
depressive symptoms
• Some ART drugs and regimens are associated with a
higher prevalence of depressive symptoms4
16
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Reduced adherence to HIV therapy
in depression
P=0.001
30
% of adherence to therapy
25
25
20
18
15
10
5
0
HIV + women
•
HIV + men
Women with HIV and depression are significantly less adherent to
therapy compared with HIV-positive men
17
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Turner BJ et al (2003) J Gen Intern Med
Improved survival associated with
adherence to treatment
18
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Lima VD et al (2007) AIDS
Reduced risk behaviour following
intervention
% reduction in new STDs diagnosed
6 months
0
–5
–10
–15
–20
–20%*
–25
–30
•
12 months
–30%*
Counselling may reduce risk behaviours
*P<0.05 for counselling vs. didactic messages
19
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Kamb ML et al (1998) JAMA
Suicide, trauma and
post-traumatic stress
disorder (PTSD)
Women for Positive Action is supported by a grant from Abbott
High level of suicidal ideation in
HIV-positive women
•
Predictors of suicidal ideation and attempts
include:
~
~
~
~
~
•
HIV diagnosis
Other psychiatric symptoms
Physical/sexual abuse
Drug/alcohol history
Isolation
People attempting or considering suicide
often do not ‘seek death’ but simply cannot
‘face life’
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Suicide prevention strategies: need
to be implemented immediately after
diagnosis
•
•
•
•
•
•
•
React to suicidal ideation and comments
Ensure access to support and services such as
crisis centres
Encourage woman to make plans for the future
Treat depression, alcohol/substance use disorders
Encourage friends and family to restrict access to
common methods of suicide and situations with a
high suicide risk
Teach cognitive coping strategies
Encourage a spiritual connection
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Link between trauma and HIV
•
HIV patients often report a history of trauma
e.g. a previous sexual assault or abuse1
• Severe traumatic events include:2
~ Physical or mental abuse
~ Parental neglect
~ Death of a spouse
•
Trauma and abuse are linked with:1
~ Unsafe sex and other high-risk behaviour
~ Poor adherence
~ Higher levels of mental illness
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Post-traumatic stress disorder (PTSD) in
women with HIV
•
16–54% of HIV patients suffer from PTSD1
•
PTSD is positively associated with female gender2
•
Women at risk of PTSD are more likely to have
experienced traumatic events3 e.g.:
~ Childhood sexual abuse1,3
~ Severe physical abuse1,3
•
Depression and PTSD often co-occur4
•
PTSD is associated with1:
~ Poorer medication adherence
~ HIV risk behaviour
24
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Stigma
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HIV-related stigma
Stigma is defined as an: “attribute of an individual
that is undesirable or discrediting in the eyes of
society, thus reducing that individual’s status”
Directly
experienced
Perceived
Linked with
depression,
PTSD,
increased risk
behaviour
Associated with
poor medication
adherence
26
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HIV-related stigma in women
•
In some cultures, HIV-positive women are
treated differently than men
• Effects of HIV-related stigma include:
~ Loss of income and carer options
~ Loss of marriage, partnership and procreation
options
~ Poor care within the health sector
~ Rejection from family/friends (social rejection)
~ Loss of hope and feelings of worthlessness
~ Loss of reputation
~ Exclusion from religious/cultural communities
~ Violence
27
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Psychosexual
wellbeing
Women for Positive Action is supported by a grant from Abbott
Impact of HIV on psychosexual
wellbeing
HIV
Sex
Safer sex
• Interest in sex
• Safer sex
practice
• Sexual enjoyment
• Commitment to
condom use
• Changing sexual
behaviour
• Non-penetrative
sex
• Control
29
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Relationships
• Disclosure,
rejection and
acceptance
• Concordance/
discordance
• Relationship
strategies
Common psychosexual problems
reported by HIV-positive women
60
% HIV-infected women
50
40
30
20
10
0
Guilt, shame,
anxiety
Complete
withdrawal from
sexual activities
Dissatisfaction
with sexuality
Dissatisfied with
body
Feel less
attractive
Negative impact
of side effects
30
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Sonnenberg-Schwan U, 10th European AIDS Conference 2005
Factors contributing to sexual
dysfunction in HIV-infected women
Psychogenic factors
Anxiety
Economic
Fertility
issues
Loss of
partner
Depression
Organic factors
Relationship
issues
Treatment
related
Cardiovascular
disease
Lipodystrophy/
Body image
Drug
abuse
Grief
reactions
Neurological
impairments
Guilt/shame
Pregnancy
Fear of
infecting others
Socio-cultural
Sexual/
physical abuse
Endocrine
problems
Other issues e.g.
surgery, radiotherapy
Lack of
sexual desire
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Infective
causes
Parenthood, pregnancy
and menopause
Women for Positive Action is supported by a grant from Abbott
Influence of HIV on a woman’s role
as a mother
•
Parenting issues for women with HIV
~
~
~
~
~
~
~
~
~
~
~
~
Disclosure to children
Confidentiality
Guilt/shame
Fear of passing infection to children
Caring for children with HIV
Adhering to complex treatment regimens
Stress of logistics of attending medical consultations
Managing childcare during periods of ill health
‘Aftercare’ of children in the event of death
Migration
Family illness and other caring responsibilities
Secrecy around HIV
33
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Disclosure to children
•
•
•
•
The decision to disclose HIV serostatus to one’s
children is very complex
Rates of disclosure range from 30% to 66%
Possible concerns of disclosure include not
wanting to scare the child, and wishing a care-free
childhood for him/her
Benefits of disclosure may include:
~ opportunities to openly discuss the diagnosis and any
concerns the child may have and to clarify misconceptions
~ providing the child with time to grieve
~ opportunities for the mother to gain comfort from her child
34
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Delaney RO et al (2008) AIDS Care
Concerns for pregnant HIV-positive
women
HIV diagnosis
during
pregnancy
HIV diagnosis
during pregnancy
HIV diagnosis
before pregnancy
Development of major
depressive/
somatic illness
Fertility treatment
Discordant partner
Need for rapid
decision-making
Baby’s HIV status
Balance joy of pregnancy
with news of diagnosis
Treatment effects
Giving birth
Experience surrounding
diagnosis
Feeding baby
Expectation
and preparation
Possibility of abortion?
35
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Addressing depression in pregnancy
•
Guidelines should be updated to recommend
~ Preconception counselling
~ Guidance on reproduction options
•
Identify modifiable factors associated with prenatal
depression
• Integrate routine screening into prenatal HIV-care
• Enhancing education to lower depression rates
~ Reduces perceived stress and social isolation
~ Encourages positive partner support
~ Alleviates fear over treatment effects and adherence
concerns
•
Offer access to peer support networks
36
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HIV in menopausal women
•
Due to improved therapies many HIVpositive women now survive to experience
menopause1
• 24–65% increased likelihood of
experiencing symptoms in menopause with
HIV2,3
• Commonly reported symptoms include:
~ Depression
~ Reduced sexual interest2,3
•
Lower CD4 cell count is significantly
associated with hot flushes/night sweats4
37
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Hormone replacement therapy
(HRT), HIV and ART
•
Studies investigating the relationship
between HIV, ART and menopausal
symptoms are limited
• Age at menopause is unaffected by ART1
• No available evidence supporting safe use
of HRT in HIV patients
• Studies of the safety and efficacy of HRT in
HIV-positive women should consider
potential drug-drug interactions with ART
38
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Treatment
Women for Positive Action is supported by a grant from Abbott
Treating emotional health problems
to improve health outcomes
• Decrease treatment costs
Emotional health
services
• Improve QOL
• Improve access to psychological
services
• Reduce stigma
Specialist
education
• Reduce distrust
• Improve medication
adherence
Patient
education and
peer support
• Reduce risk behaviour
40
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Individualizing care
Socio-economic
class
Age
Family issues
Sexual issues
Medical history
Pregnancy
Stage of
HIV journey
Treatment 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
41
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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
42
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Case studies
Women for Positive Action is supported by a grant from Abbott
Case study 1: HIV-positive mother
coping with diagnosis
•
HIV-positive mother, diagnosed during pregnancy who did not
share her status with any of her family
•
Child’s father left soon after the birth
•
Mother shows signs of depression
and mood disturbance
•
She claims not to have suicidal thoughts but mentions
wanting to ‘disappear’ and feeling life is ‘pointless’
In addition to managing her diagnosis and
following up on the baby’s health, what other
issues should be considered?
44
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Issues to consider
Mental health and emotional wellbeing
• Women are more likely to be diagnosed with
mental health and emotional problems than men
• Pregnancy increases the risk of emotional or family
problems in HIV positive women
• HIV diagnoses made during pregnancy are
associated with a higher incidence of mental health
issues, e.g. post-partum depression, than nonpregnancy diagnoses1
• Not all HIV clinics have good access to perinatal
psychiatric services
45
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Issues to consider
Disclosure
• Disclosure to partners is encouraged
• Pregnancy is key window for disclosure
• A woman is more likely to disclose during
pregnancy, but if she doesn’t disclose then she is
likely to do so post-partum
46
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Case study 2: HIV+ migrant mother
responding to child's diagnosis
•
•
•
•
•
HIV+ migrant mother on stable treatment
One older HIV+ son and one younger HIV- daughter who
was born in the new home country
Parents both devastated–some of the father’s anger
regarding son’s status as been directed at the mother
The mother feels ‘numb’, self-harms and has violent
nightmares
She explains ‘I just want to see if I can feel anything. If I can
feel pain, I will know I am real’
What support, further questioning, and
information can be given?
47
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Issues to consider
Posttraumatic stress disorder
• HIV positive women can suffer from PTSD
stemming from sexual violence and physical abuse
• PTSD and depression can often co-occur
• This disorder is associated with poorer medication
adherence and HIV risk behaviour
Trauma
• Trauma history is elevated among HIV-positive
women
• Trauma and abuse are linked with poor medication
adherence, HIV risk behaviour and higher levels of
emotional illness
48
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Conclusions
•
•
•
•
•
Stigma of mental illness combined with a
HIV diagnosis may lead to compound stress
Burden of emotional disturbance in HIVpositive women is generally under
recognised and under treated
Limited access to psychiatric support exists
for many HIV-positive women
Medication adherence is affected by mental
illness and emotional wellbeing
Introduction of guidelines supporting
minimum standards of care is essential
49
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Conclusions
•
Community and peer support can be highly
effective
• Monitoring the evolving burden of grief, loss
and change that emerges as the HIV
infection unfolds within a family is important
• Use of less stigmatised terminology, such
as ‘emotional wellbeing’ may encourage
open discussion with those affected by
issues relating to:
~ HIV
~ Emotional disturbances
~ Mood disorders
50
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Thank you for your
attention
Any questions?
Women for Positive Action is supported by a grant from Abbott