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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.

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emotional wellbeing of women living with hiv

Emotional wellbeing of women living with HIV

Women for Positive Action is supported by a grant from Abbott

contents
Contents

Introduction and evidence base

Emotional challenges and triggers

Depression

Suicide, trauma, PTSD

Stigma

Psychosexual wellbeing

Parenthood, pregnancy and menopause

Treatment

Case studies

Women for Positive Action is supported by a grant from Abbott

introduction and evidence base

Introduction and evidence base

Women for Positive Action is supported by a grant from Abbott

introduction
Introduction

Adjusting to treatment and living with HIV

Diagnosis and coping

Care and relationships

  • HIV infection can be both:
    • Chronic
    • Acute and life-threatening
  • HIV is associated with significant ‘emotional health’ challenges

Women for Positive Action is supported by a grant from Abbott

social and cultural differences affect how women manage hiv
Social and cultural differences affect how women manage HIV

More limited scope to negotiate frequency of and nature of sexual interactions

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

Violence may increase a woman’s vulnerability to HIV

Migrant women, in particular, are often isolated and lack social support

Simultaneous management of medications, jobs, families and other medical and gynecologic problems is challenging

Language or cultural barriers may add to lack of support

Impact of religious and cultural beliefs on women

Reduced access to healthcare, education and economic resources

May come from ‘hard to reach’ communities

5

Women for Positive Action is supported by a grant from Abbott

positive emotional health
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

Women for Positive Action is supported by a grant from Abbott

emotional health in women with hiv
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

Women for Positive Action is supported by a grant from Abbott

published studies of the impact of hiv on emotional health of women
Published studies of the impact of HIV on emotional health of women

Women for Positive Action is supported by a grant from Abbott

emotional challenges and triggers

Emotional challenges and triggers

Women for Positive Action is supported by a grant from Abbott

hiv often has mental and emotional consequences
HIV often has mental and emotional consequences

Relationships, independence, violence

Parenting, pregnancy, children, carer resposibilities

Quality of life

Diagnosis-related trauma

Coping, adjustment, responding to treatment

Challenges for HIV-positive women

Stigma-related stresses, fear, secrecy

Disclosure-related stresses

Ageing and the menopause

Depression, suicidal thoughts /acts, emotional stress

Risk behaviours

Grief, loss and guilt

Body image problems

Women for Positive Action is supported by a grant from Abbott

how women experience hiv the patient journey
How women experience HIV: the patient journey

+

Acceptance / moving on

Starting

treatment

Disclosure

(often avoided)

Pregnancy, job loss, negative life events

(at any stage)

Improvement in

emotional wellbeing

Side effects

If rejected by loved ones

If rejected bypartner

Denial

Depression(can continue)

Diagnosis

-

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

11

emotional triggers in hiv
Emotional triggers in HIV

12

Women for Positive Action is supported by a grant from Abbott

specific triggers for emotional disturbance in hiv
Specific triggers for emotional disturbance in HIV

13

Women for Positive Action is supported by a grant from Abbott

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

Range of emotional health issues associated with HIV

Women for Positive Action is supported by a grant from Abbott

depression

Depression

Women for Positive Action is supported by a grant from Abbott

vulnerability of hiv positive women to depressive symptoms
Vulnerability of HIV-positive women to depressive symptoms
  • 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
  • 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
  • 34% of women diagnosed with depression compared with 29% of men3

16

Women for Positive Action is supported by a grant from Abbott

reduced adherence to hiv therapy in depression
Reduced adherence to HIV therapy in depression
  • Women with HIV and depression are significantly less adherent to therapy compared with HIV-positive men

P=0.001

30

25

25

18

20

% of adherence to therapy

15

10

5

0

HIV + women

HIV + men

Turner BJ et al (2003) J Gen Intern Med

Women for Positive Action is supported by a grant from Abbott

improved survival associated with adherence to treatment
Improved survival associated with adherence to treatment

Lima VD et al (2007) AIDS

Women for Positive Action is supported by a grant from Abbott

reduced risk behaviour following intervention
Reduced risk behaviour following intervention

12 months

6 months

0

% reduction in new STDs diagnosed

–5

–10

–15

–20

–20%*

–25

–30

–30%*

  • Counselling may reduce risk behaviours

*P<0.05 for counselling vs. didactic messages

Kamb ML et al (1998) JAMA

Women for Positive Action is supported by a grant from Abbott

suicide trauma and post traumatic stress disorder ptsd

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
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’

Women for Positive Action is supported by a grant from Abbott

suicide prevention strategies need to be implemented immediately after diagnosis
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

Women for Positive Action is supported by a grant from Abbott

link between trauma and hiv
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

Women for Positive Action is supported by a grant from Abbott

post traumatic stress disorder ptsd in women with hiv
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

Women for Positive Action is supported by a grant from Abbott

stigma

Stigma

Women for Positive Action is supported by a grant from Abbott

hiv related stigma
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”

Perceived

Directly experienced

Linked with depression, PTSD, increased risk behaviour

Associated with poor medication adherence

Women for Positive Action is supported by a grant from Abbott

hiv related stigma in women
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

Women for Positive Action is supported by a grant from Abbott

psychosexual wellbeing

Psychosexual wellbeing

Women for Positive Action is supported by a grant from Abbott

impact of hiv on psychosexual wellbeing
Impact of HIV on psychosexual wellbeing

HIV

Sex

Safer sex

Relationships

  • Safer sex practice
  • Commitment to condom use
  • Non-penetrative sex
  • Control
  • Disclosure,
  • rejection and
  • acceptance
  • Concordance/
  • discordance
  • Relationship strategies
  • Interest in sex
  • Sexual enjoyment
  • Changing sexual behaviour

Women for Positive Action is supported by a grant from Abbott

common psychosexual problems reported by hiv positive women
Common psychosexual problems reported by HIV-positive women

% HIV-infected women

Sonnenberg-Schwan U, 10th European AIDS Conference 2005

Women for Positive Action is supported by a grant from Abbott

factors contributing to sexual dysfunction in hiv infected women
Factors contributing to sexual dysfunction in HIV-infected women

Psychogenic factors

Organic factors

Anxiety

Fertility issues

Relationship issues

Treatment related

Economic

Cardiovascular disease

Loss of partner

Lipodystrophy/

Body image

Depression

Drug abuse

Neurological impairments

Guilt/shame

Grief reactions

Endocrine problems

Pregnancy

Fear of infecting others

Sexual/physical abuse

Socio-cultural

Other issues e.g. surgery, radiotherapy

Infective causes

Lack of sexual desire

Women for Positive Action is supported by a grant from Abbott

parenthood pregnancy and menopause

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
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

Women for Positive Action is supported by a grant from Abbott

disclosure to children
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 Care

Women for Positive Action is supported by a grant from Abbott

concerns for pregnant hiv positive women
Concerns for pregnant HIV-positive women

HIV diagnosis

during pregnancy

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

before pregnancy

Fertility treatment

Discordant partner

Baby’s HIV status

Treatment effects

Giving birth

Feeding baby

Women for Positive Action is supported by a grant from Abbott

addressing depression in pregnancy
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

Women for Positive Action is supported by a grant from Abbott

hiv in menopausal women
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

Women for Positive Action is supported by a grant from Abbott

hormone replacement therapy hrt hiv and art
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

Women for Positive Action is supported by a grant from Abbott

treatment

Treatment

Women for Positive Action is supported by a grant from Abbott

treating emotional health problems to improve health outcomes
Treating emotional health problems to improve health outcomes
  • Decrease treatment costs
  • Improve QOL
  • Improve access to psychological services

Emotional health services

  • Reduce stigma
  • Reduce distrust

Specialisteducation

  • Improve medication adherence
  • Reduce risk behaviour

Patient education and peer support

Women for Positive Action is supported by a grant from Abbott

individualizing care
Individualizing care

Socio-economic class

Age

Family issues

Sexual issues

Medical history

Treatment should vary depending on the unique needs and personal circumstances of each woman . . .

Pregnancy

Support

Stage of HIV journey

Immigration

Child-bearing potential

Violence or sexual abuse

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

Acceptance of diagnosis

Culture or religion

Language and understanding

Women for Positive Action is supported by a grant from Abbott

individualizing care1
Individualizing care

. . . and consider women in their social contexte.g. as a mother, a partner, a daughter, a caregiver

Women for Positive Action is supported by a grant from Abbott

case studies

Case studies

Women for Positive Action is supported by a grant from Abbott

case study 1 hiv positive mother coping with diagnosis
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
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

45

Women for Positive Action is supported by a grant from Abbott

issues to consider1
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

Women for Positive Action is supported by a grant from Abbott

case study 2 hiv migrant mother responding to child s diagnosis
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

Women for Positive Action is supported by a grant from Abbott

issues to consider2
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

Women for Positive Action is supported by a grant from Abbott

conclusions
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

Women for Positive Action is supported by a grant from Abbott

conclusions1
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

Women for Positive Action is supported by a grant from Abbott

thank you for your attention

Thank you for your attention

Any questions?

Women for Positive Action is supported by a grant from Abbott