Emotional wellbeing of women living with HIV Women for Positive Action is supported by a grant from...

Emotional wellbeing of

women living with HIV

Women for Positive Action is supported by a grant from Abbott

2

Contents

Introduction and evidence base

Emotional challenges and triggers

Depression

Suicide, trauma, PTSD

Stigma

Psychosexual wellbeing

Parenthood, pregnancy and menopause

Treatment

Case studies


Introduction and evidence base


4

Introduction

• HIV infection can be both:~ Chronic~ Acute and life-threatening

• HIV is associated with significant ‘emotional health’ challenges

Diagnosis and

coping

Adjusting to

treatment and living with HIV

Care and relationships


5

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


6

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


7

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


8

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


Emotional challenges and

triggers


10

HIV often has mental and emotional consequences

Parenting, pregnancy,

children, carer

resposibilities

Challenges for HIV-positive

women

Diagnosis-related trauma

Stigma-related

stresses, fear, secrecy

Depression, suicidal

thoughts /acts,

emotional stress

Relationships,

independence, violence

Grief, loss and guilt

Risk behaviours

Ageing and the

menopause

Disclosure-related stresses

Coping, adjustment, responding

to treatment

Quality of life

Body image problems


11

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

12

Emotional triggers in HIV

12

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

ART and side effects

• Burden of treatment• Side effects such as fat distribution, weight, appearance

and CNS 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


13

Specific triggers for emotional disturbance in HIV

13

Emotional trigger

Cause of emotional stress

Social difficulties

• Stigma and discrimination• Community issues e.g. housing, poverty, religious

beliefs, language and culture• HIV impact on relationships• Unemployment/economic challenges, fear of disclosure

at workplace

Diagnosis• 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


14

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


Depression


16

Vulnerability of HIV-positive women to depressive symptoms

16

• 17% higher likelihood of acute stress disorder among women compared with men2

• 30–60% of women with HIV in the community and clinic samples report depression1

• 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


17

Reduced adherence to HIV therapy in depression

• Women with HIV and depression are significantly less adherent to therapy compared with HIV-positive men

% o

f ad

here

nce t

o

thera

py

HIV + women

HIV + men

18

25

0

25

5

10

15

20

30 P=0.001

Turner BJ et al (2003) J Gen Intern MedWomen for Positive Action is supported by a grant from Abbott

18

Improved survival associated with adherence to treatment

Lima VD et al (2007) AIDSWomen for Positive Action is supported by a grant from Abbott

19

% r

edu

ctio

n i

n n

ew

ST

Ds

dia

gn

ose

d

–30

–25

–20

–15

–10

–5

06 months 12 months

–20%*

–30%*

• Counselling may reduce risk behaviours

*P<0.05 for counselling vs. didactic messages

Reduced risk behaviour following intervention

Kamb ML et al (1998) JAMAWomen for Positive Action is supported by a grant from Abbott

Suicide, trauma and post-traumatic

stress disorder (PTSD)


21

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’


22

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


23

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


24

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


Stigma


26

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


27

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


Psychosexual wellbeing


29

Impact of HIV on psychosexual wellbeing

HIV

Sex Safer sex Relationships

• Interest in sex

• Sexual enjoyment

• Changing sexual behaviour

•Safer sex practice

•Commitment to condom use

•Non-penetrative sex

•Control

• Disclosure, rejection and acceptance

• Concordance/ discordance

• Relationship strategies


30

Common psychosexual problems reported by HIV-positive women

0

10

20

30

40

50

60

Guilt, shame,anxiety

Completewithdrawal fromsexual activities

Dissatisfactionwith sexuality

Dissatisfied withbody

Feel lessattractive

Negative impactof side effects

% H

IV-i

nfe

cted w

om

en

Sonnenberg-Schwan U, 10th European AIDS Conference 2005Women for Positive Action is supported by a grant from Abbott

31

Factors contributing to sexual dysfunction in HIV-infected women

Neurological impairments

Endocrine problems

Cardiovascular disease

Treatment related

Infective causes

Other issues e.g. surgery, radiotherapy

Psychogenic factors Organic factors

Anxiety

Economic

Socio-cultural

Grief reactions

Drug abuse

Depression

Loss of partner Lipodystrophy/

Body image

Fertility issues Relationship

issues

Sexual/physical abuse

Fear of infecting others

Lack of sexual desire

Guilt/shame

Pregnancy


Parenthood, pregnancy and

menopause


33

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


34

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

Delaney RO et al (2008) AIDS CareWomen for Positive Action is supported by a grant from Abbott

35

Concerns for pregnant HIV-positive women

HIV diagnosis during pregnancy

Development of major depressive/

somatic illness

Need for rapid decision-making

Balance joy of pregnancy with news of diagnosis

Experience surrounding diagnosis

Expectation and preparation

Possibility of abortion?

HIV diagnosis during pregnancy

Fertility treatment

Discordant partner

Baby’s HIV status

Treatment effects

Giving birth

Feeding baby

HIV diagnosis before pregnancy


36

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


37

HIV in menopausal women

• Due to improved therapies many HIV-positive 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


38

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


Treatment


40

Treating emotional health problems to improve health outcomes

Patient education and peer support

• Improve medication adherence

• Reduce risk behaviour

• Reduce stigma

• Reduce distrustSpecialisteducation

• Decrease treatment costs

• Improve QOL

• Improve access to psychological services

Emotional health services


41

Individualizing care

Treatment 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


42

Individualizing care

. . . and consider women in their social context

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


Case studies


44

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’

44

In addition to managing her diagnosis and following up on the baby’s health, what

other issues should be considered?


45

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 non-pregnancy diagnoses1

• Not all HIV clinics have good access to perinatal psychiatric services

45Women for Positive Action is supported by a grant from Abbott

46

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


47

• 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’

Case study 2: HIV+ migrant mother responding to child's diagnosis

47

What support, further questioning, and information can be given?


48

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 behaviourTrauma• 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


49

Conclusions

• Stigma of mental illness combined with a HIV diagnosis may lead to compound stress

• Burden of emotional disturbance in HIV-positive 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


50

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


Thank you for your attention

Any questions?


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