Emotional wellbeing in women

living with HIVWomen’s Networking Zone

2012

Women for Positive Action is supported by a grant from Abbott

Women for Positive Action is an educational program funded and initiated by Abbott Laboratories

Ulrike Sonnenberg-Schwan & Ophelia Haanyama Ørum

Women for Positive Action

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Ophelia Haanyama ØrumSweden

Ulrike Sonnenberg-SchwanGermany

Women for Positive Action

www.womenforpositiveaction.org Contact us: WFPA@litmus-mme.com

Twitter: @WFPA_HIV

Women for Positive Action is a global initiative established to address the specific concerns

of women living and working with HIV

The initiative is led by a faculty of healthcare professionals, women living with HIV and

community group representatives from across Canada, Europe, Latin America and South

Africa

Women for Positive Action mission

To empower, educate and support women with HIV and the healthcare professionals and

community advocates/leaders involved in their treatment

To explore the issues facing women with HIV and provide meaningful education-based

support to respond to these needs

To contribute towards an enhanced quality of life for women with HIV

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Objectives of this session

Emotional health and the HIV

journey

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HIV is associated with significant emotional health challenges

Diagnosis and coping

Adjusting to treatment and

living with HIV

Care and relationships

Range of emotional health issues associated with HIV• Stigma• Psychosexual

problems• Relationship

challenges• Pregnancy • Menopause• Body image• Confidence

• Depression • Anxiety• Coping problems• Trauma• Post-traumatic

stress disorder (PTSD)

• Neurocognitive impairment

Denial

Disclosure(often avoided)

Depression(can continue)

-

+

optimal journeyemotional disturbance and depression

Stigma and

rejection

Stigma and

rejection

Pregnancy, job loss, negative life

events(at any stage)

Side effects

Starting treatment

Diagnosis

Acceptance / moving on

How women experience HIV: the patient journey

Impr

ovem

ent

in

emot

iona

l wel

lbei

ng

The journey is characterised by many emotional ups and downs and varies from woman to woman

The Planning Shop International Women Research, July 2008

Acceptance

The challenge of . . . diagnosis

Sorrow

FearAnger

GriefDenial

What support can women seek to help them minimise the emotional impact

of HIV?

Existing peer support initiatives for women living with HIV

Disclosure in women living with HIV

• Disclosure is a major factor in all aspects of life and recurs over the course of a lifetime1

1. Quebec project

In what way can disclosure have a positive impact on a women’s emotional health?

Initiatives to help support women who decide to disclose their HIV status

•Train healthcare workers in HIV management

•Establish more VCT services, including in rural areas and for marginalised groups

•Reform laws on discrimination and confidentiality

Policy and programme approaches

•Ongoing counselling and HIV support groups

•Role play•Mediated disclosure

•Involving women in HIV testing and counselling

Counselling approaches

•Public information campaigns and community forums aimed at promoting tolerance, compassion and understanding, and reducing fear, stigma and discrimination

Community-based initiatives

WHO, 2004VCT = Voluntary Counselling and Testing

In what way can HIV affect women’s relationships?

Concerns for pregnant HIV-positive women

HIV diagnosis during pregnancy

Development of major depressive/

somatic illnessNeed for rapid

decision-makingBalance joy of pregnancy

with news of diagnosisExperience surrounding

diagnosisExpectation

and preparationPossibility of abortion?

HIV diagnosis during pregnancy

Fertility treatmentDiscordant partnerBaby’s HIV statusTreatment effects

Giving birthFeeding baby

HIV diagnosis before pregnancy

Influence of HIV on a woman’s role as a mother

• 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

Disclosure to children

• The decision to disclose HIV serostatus to one’s children is very complex

• Rates of disclosure range from 30–66% • 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

In what other ways can HIV affect women’s relationships?

HIV Related Stigma and

DiscriminationUlrike Sonnenberg-Schwan, Germany

“Many people suffering from AIDS and not killed by the disease itself are killed by the stigma surrounding everybody who has HIV/AIDS.”

(Nelson Mandela, 2002)

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Definition of stigma

Goffman defined stigma as . . .

“an attribute that is deeply discrediting” and that reduces the bearer “from a whole and usual person to a tainted, discounted one”1

•Using the Goffman definition, stigmatisation is thought to exist when society labels an individual or group as different or deviant1

•Stigma is also viewed as “a process of devaluation of people either living with, or associated with, HIV and AIDS”2

1. Goffman E 1963; 2. Mahajan A et al, 2008

Disclosure, stigma and discrimination are among the many challenges facing women with HIV

Parenting, pregnancy,

children, carer responsibilities

Challenges for women

living with HIVDiscrimination-

related concerns

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

Diagnosis, coping,

adjustment, responding to

treatment

Quality of life

Body image problems

Keegan A et al, 2005

Discrimination can be driven by each different type of stigma

HIV-related stigma

Perceived stigma

Enacted stigma

Symbolicstigma

Internalisedstigma

Zhang Y et al, 2009

HIV/AIDS

LGBT

Drug use

Sex work

Promiscuity

Ethnic minority

Deadly disease

Infection risk

poverty

Older age…

The multiple layers of stigma

“Each day we have to live with it. It‘s not only HIV. It’s the things we have to deal with every day. First, I’m black. Second, I‘m a woman. Third, I was a single mom for a while. And I get social aid. So I give you all the reasons you need! It‘s like racism – you cant hide from it.”

Impact of HIV-related stigma

and discrimination

HIV-related stigma and discrimination: Impact on wellbeing and health

Sayles J et al, 2009; Vanable P et al, 2006; Rankin W et al, 2005; Rahangdale L et al, 2010; www.stigmaindex.org

HIV-related stigma and discrimination: Personal and psychological effects

Vanable P et al, 2006; Sandelowski M et al, 2004; www.stigmaindex.org

HIV-related stigma and discrimination: Social and community effects

Vanable P et al, 2006; Sandelowski M et al, 2004; www.stigmaindex.org

HIV-related stigma and discrimination: Partnership and family life effects

Vanable W et al, 2006; Sandelowski M et al, 2004; www.stigmaindex.org; WHO, 2011

HIV-related stigma impacts on access to care and treatment adherence• HIV-related stigma may be associated with

suboptimal ART adherence~ 42.5% reported suboptimal ART adherence~ this relationship may be partially mediated by lower

mental health status• People living with HIV and AIDS experiencing

high levels of stigma had over four times the odds of reporting poor access to care~ 77% reported poor access to care and 10.5%

reported no regular source of HIV care

Sayles J et al, 2009

Empowering women to make a choice about

disclosure

Disclosure in women living with HIV• Disclosure is a major

factor in all aspects of life and recurs over the course of a lifetime1

• HIV-related stigma negatively affects a woman’s willingness to disclose2

1. Quebec project; 2. WHO, 2004

Factors considered by women when thinking about disclosure1

Disclosure should be a personal choice

• Important to promote openness about HIV BUT equally important to protect human rights

• Each individual should be assured that the result of an HIV test is confidential and that decisions about disclosure will be decisions that they themselves must make

• Disclosure is a lifetime process, tailored to the individual woman~ There are many levels and stages of disclosure, and

no one path is suitable for everyone

Disclosure should feel like a safe event, where the benefits clearly outweigh any potential risks

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Positive impact of disclosure

Voluntary disclosure

Characteristicsand benefits of disclosure

Helps prevent onward

transmissionEncourages access to

HIV prevention and care services

Establishes trust

between groups

Respects dignity of affected

individuals

Helps reduce

anxiety and depression

Helps reduce secrecy

Leads to greater

openness in the

community

Increased adherence

Beneficial results for individuals, families and

partners

Maintains confidentiali

ty

Helps reduce

stigma and discriminati

on UNAIDS, 2000, WHO, 2004

Quality of

life

Factors that motivate women to disclose their HIV status

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Ethical

responsibility

Concern for

partner’s health

Seeking social

support

Support from

counselling

1. WHO, 2004; 2. Chandra P et al, 2003

How can we overcome

stigma and discrimination?

Discussion

Back up

Key target audiences for stigma prevention initiatives

Logie C et al, 2011

The GIPA PrincipleIncreased self-determination and personal

development for women living with HIV

• GIPA, Greater involvement of people living with HIV• Universal right to self-determination and

participation in decision-making processes• Based on fact that direct experience and

commitment have no substitute~ no one can respect the interest of people living with HIV

better those people themselves• Widely recognised and accepted• Should be implemented at all opportunities when

working with organisations and individuals

UNAIDS, 2007

Benefits of GIPA

• Strong HIV organisations• Women with HIV engaged in and leading

programmes• Those with HIV are recognised as experts• Increased self-esteem• Decreased depression and social isolation• Improved treatment adherence• Increased employability• Promoted overall health and well-being

UNAIDS, 2007

Increased self-determination and personal development for women living with HIV

Support groups and community organisations can combat stigma

• Support groups can work together to reduce stigma, discrimination and equality in the community

• In 2007, the Michael Stich Foundation launched an awareness campaign to reduce mother to child transmission, but the provocative images used were stigmatising and discriminating

• The German Network of Women and AIDS and the Deutsche AIDS-Hilfe campaigned to have the two most discriminating images shown here removed

• The organisations worked to ensure that• mothers were protected from stigma and

discrimination • the campaign raised awareness of preventing

transmission of HIV without impacting on the dignity of women and children with HIV

Faith-based organisations (FBOs)

• Faith and religion can have a positive impact on wellbeing

and emotional health1-3

• FBOs, such as tearfund, have the ability to influence the attitudes and behaviours of their community members, who are in close and regular contact with all age groups in society

• Some faith groups provide an important source of comfort,

friendship and practical support to those with HIV

• There are a growing number of initiatives aimed at equipping faith leaders with the information and tools to challenge HIV-related stigma and discrimination in their communities

1. Ironson G et al, 2006; 2. Woodard E et al, 2001; 3. Ridge D et al, 2008

Supporting women to cope with HIV-related stigma

• Rationalisation• Seeing self as OK• Letting it pass• Turning to God• Having hope• Humour• Keeping active/busy

Emotional coping strategies

• Joining formal or informal support groups

• Disclosing• Speaking to others• Getting counselling• Peer support and

education to gain knowledge

• Modifying behaviour• Learning from

others/following positive role models

Problem solving strategies

Makoae L et al, 2008

• There are a number of strategies which a healthcare professional can use or suggest to help support women experiencing stigma

Overcoming the challenges of stigma and discrimination:

case studies

AIDES – Campaign against discrimination• In 2006 a media campaign was launched to fight

discrimination in France• Using famous personalities the campaign asked

questions such as ‘‘Would you still love me as much if had

HIV?’’ Line Renaud (French actress/singer)

‘‘Would you still come and see my concerts if I had HIV’’ Diam’s (French singer)

• AIDES also have a project called: “HIV Positive Women in action” which aims to mobilize women living with HIV (http://bit.ly/vtZwVd)