Beliefs, Spirituality and HIV:
Harnessing benefits and
overcoming barriers
Women for Positive Action is supported by a grant from Abbott
Contents
Introduction
The potentially negative – When beliefs, faith, spirituality and
religion can be a barrier to managing HIV
The positive – What beliefs, faith, spirituality and religion can
offer women with HIV
Scientific evidence: Spirituality, religion and
clinical outcomes
Engaging with Faith Leaders and faith-based organisations
Engaging with beliefs, faith and religion as part of medical and
pastoral care
Beliefs and practical implications of different religions
Case studies
2
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Introduction
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What do we mean by spirituality,
faith, religion and beliefs?
Spirituality ‘human experience that
seeks to transcend self and find
meaning and purpose through
connection with others, nature
and/or a Supreme Being.
Spirituality may or may not involve
religious structures or traditions’
Faith ‘a strong belief that an
invisible power controls human
destiny’ ‘a trusting belief in a
Supreme Being and/or said being's
role in the control of spiritual
things’
4
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What do we mean by spirituality,
faith, religion and beliefs?
Religion ‘an organised approach to
human spirituality which usually
encompasses a set of narratives,
symbols, beliefs and practices.
These often have a supernatural or
transcendent quality, that give
meaning to the practitioner's
experiences of life through
reference to a higher power, God or
gods, or ultimate truth’
Beliefs ‘the psychological state in
which an individual holds a
proposition or premise to be true’
5
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Why is spirituality, faith or religion
important for women living with HIV?
• Living with HIV leads many people to question the
meaning of their lives, to seek guidance and a new life
purpose
• People living with HIV often describe their HIV diagnosis
as a ‘catalyst’ or positive turning point in their lives –
spirituality can be a positive component of the journey
for a woman with HIV
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6
Ironson et al. J Gen Intern Med, 2006;
Kremer et al. AIDS Care 2009
Why is spirituality, faith or religion
important for women living with HIV?
• Many people living with HIV turn to some type of belief or
coping system for additional support, be it spirituality,
religious faith, community groups or faith-based
organisations
• The majority of women living with HIV in Europe and
North America are from communities with a strong form
of spirituality, faith or religion
• The importance of beliefs has been shown in surveys
that estimate a marked increase in spirituality among
people living with HIV following their diagnosis
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7
Ironson et al. J Gen Intern Med, 2006;
Kremer et al. AIDS Care 2009
Challenges for women living with HIV
Parenting,
pregnancy, HIVpositive
children
Relationships,
independence,
violence
Quality of life
with HIV
Diagnosisrelated trauma
Vulnerability
for isolation
Stigma-related
stresses, fear,
secrecy
Disclosurerelated
stresses
Depression,
suicidal
thoughts /acts,
emotional
stress
Grief, loss and
guilt
Ageing
and the
menopause
Exploitation
and violence
8
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Medication
adherence
Spiritual changes following HIV
diagnosis
Intensification of spirituality
71%
An increase in spiritual practices
53%
A change in priorities and the awareness that time is of
the essence
50%
Finding meaning and purpose in life
37%
45%
More gratitude and appreciation, feeling blessed
39%
Taking better care of own health
47%
9
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Kremer et al. AIDS Care 2009
Where can women living with HIV
seek support?
Healthcare
professionals
Peer support
from other
women with
HIV
Friends
Sources of
support for
women living
with HIV
Workplace,
and wider
social circle
Community
Faith-based
organisations
Places of
worship
Internallythrough
spirituality
10
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Family
The potentially negative –
When beliefs, faith,
spirituality and religion
can be a barrier to
managing HIV
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Faith and beliefs as a barrier in HIV
prevention
•
Abstinence-only advice or ‘comprehensive’ safer
sex education?
~ Religious teachings are sometimes used as justification of
abstinence-only advice
•
Beliefs such as ‘God will protect me’ and ‘God
intended this for me’ may encourage
~
~
~
~
Risk-taking behaviour
Feelings of helplessness
Resignation
Denial
12
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Potentially negative impact of faithbased institutions / traditions on
women living with HIV
There may be a negative impact on women living with HIV if
faith-based institutions, religious teachings, traditions, and
faith communities….
…claim religion
or tradition as a
justification for
HIV as ‘a punishment’
… influence people
to form negative
opinions about
their medication
...offer solutions, but with
‘strings attached’ to
vulnerable women
13
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Stigma, shame and guilt
Stigma: “attribute of an individual that is
undesirable or discrediting in the eyes of
society, thus reducing that individual’s status”
•
•
•
HIV stigma exists, including in some faith
communities where HIV is considered a ‘punishment
from God’
Feelings of guilt can stem from some religious
teachings
Religion may play a role in both:
~ causing HIV stigma
~ non-discrimination and acceptance of women living with HIV
14
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Zou et al. BMC Public Health 2009
The positive – What
beliefs, faith, spirituality
and religion can offer
women with HIV
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Prayer as an ‘absent counsellor’
•
The roles played out by prayer in
wellbeing include:
~ Acting as an absent counsellor
~ Construction of a compassionate ‘life
scheme’
~ Interruption of negative rumination
~ Promoting mindfulness
~ Promoting positive thinking
~ Achieving results
16
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Ridge et al. Sociol Health Illn 2008
The beneficial effects of prayer
•
Prayer can be an important buffer against stress
• Women often use prayer to overcome the initial
shock, sadness and anger of hearing their HIV
diagnosis
• Many find prayer an effective self-care strategy
• Women rely more on prayer and religion than men
in dealing with health-related issues
17
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Prayer and decisions about HIV
medication
If I pray, God will give me
the right medication and
the right people to direct
me through this HIV
I go by what the doctor
advises…. take it home
and pray about it and do
what God wants me to do
Prayer is the first thing, but
you also need support of
doctors to push you and
make you understand
The doctor guides your body and whatever
reactions are going on in your body…. But
prayer guides your soul, and that’s where you
need your inner peace and your strength
18
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My doctor wanted me to go
on medication and I told
her that I have to think
about it, but I just pray
about it….I was scared, but
I prayed to God for the
wisdom and knowledge
Crane et al. AIDS Education and Prevention 2000
Through the construction of a positive ‘lifescheme’ spirituality can provide support
Spirituality Can Help Women Living With
HIV To ‘Move On’
“Why, when, how
was I infected?”
“How can I live my
life with HIV?”
Someone out there is ‘on my side’
Comfort and support of a ‘greater good’
A meaning to life
19
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Positive impact of faith and
spirituality
Comfort
Coping
Calmness
Finding a
‘meaning’
Move into a
positive mindset
Happiness
Support
Mindfulness
Empowerment
Feeling of ownership
over the future
Strength to reach
out to others
20
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Scientific Evidence:
Spirituality, Religion and
Clinical Outcomes
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HIV therapy impacts on the mind and
body
•
•
Mind
• Potential benefits of ART on mental and
emotional wellbeing
Body
• Potential beneficial effects of ART on physical
wellbeing and visible symptoms of HIV
22
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Spirituality and clinical outcomes
•
Higher spiritual well-being impacts on emotional
aspects of HIV and may lead to:
• reduced emotional distress
• lower rate of depression
• greater optimism
• better psychological adaptation
• greater preservation of CD4 cells
• better control of viral load
23
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Spiritual activities have a positive
effect on wellbeing & emotional health
Author
Study population
Ironson &
Kremer 2008
74 people with HIV
Fitzpatrick et
al. 2007
901 adults with HIV in the US
(questionnaire-based)
Ironson et al.
2006
Longitudinal study over 4
years in 100 people with HIV
Cotton et al.
2006
450 people with HIV
Key Finding
• Those with positive spiritual transformations were 4 times
less likely to die within 3-5 years than those without (20%
vs. 80%, p=0.024)
• Individuals not using HAART and who participated in
spiritual activities over the previous year had a reduced risk
of death compared with those not practicing spirituality
• 45% showed an increase in religiousness/ spirituality after
the diagnosis of HIV and this correlated with significantly
greater preservation of CD4 cells and better control of VL
• The longer someone with HIV/AIDS lives, the more likely
they are to become more religious/ spiritual
24
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Spiritual activities have a positive
effect on wellbeing & emotional health
Author
Study population
Key Finding
Scarinci et al.
2009
83 HIV-infected women,
average age 43 years, 62%
African American
• A positive relationship was shown between spiritual wellbeing and number of spiritual practices (praying alone,
helping others, and listening to music) used
Polzer Casarez
2008
38 African American mothers
with HIV
• The women dealt with the stresses of HIV through a
relationship with God: “God in control” and “God requires
participation”
Ridge et al.
2007
44 HIV+ individuals (10
women)
• Non-secular prayer can be used as a DIY health-promotion
technology. Some people living with HIV may use this to
modulate subjectivity and develop personal narratives that
support good health
Ironson et al.
2006
100 diverse participants with
HIV followed for 4 years
• Positive views of God were associated with better immune
(CD4) and viral control (VL) while negative views of God
were associated with faster disease progression
25
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Spiritual activities have a positive
effect on wellbeing & emotional health
Author
Peltzer et al
2007
Cotton et al.
2006
Szaflarski et
al. 2006
Study population
Women living with HIV with
history of abuse
450 people living with HIV
450 outpatients with HIV/AIDS
from 3 US cities (14% female)
Findings
• Women with HIV/AIDS often neglect their health through
failure to engage in health-promoting self-care practices
• People living with HIV with greater optimism, greater selfesteem, greater life satisfaction, minorities, and who drink
less alcohol tend to be both more spiritual and religious.
• An increase in spirituality/religion was associated with a
feeling that life had improved; 29.97% due to a direct effect;
38.54% due to indirect effects through healthy beliefs (29%)
and health status/ health concerns (9%)
26
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View of God is critical to outcomes
Author
Maman et al.
2009
Ironson et al.
2006
Study population
Key Finding
40 African women with HIV
• Conceptualising their infection as a path chosen by God, and
believing that God has the power to cure their infection
comforted women and provided them with hope
100 individuals with HIV
• A negative view of God was significantly associated with faster
CD4 decline and greater increases in VL while a positive view
of God was significantly associated with increased CD4 and a
decreased VL over time
27
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Spiritual activities have a positive
effect on emotional health
Author
Study population
Key Finding
Prospective analysis involving 180
Perez et al. 2009
adults with HIV
• Psychoeducational interventions that incorporate
practices such as meditation or prayer for people who are
receptive to spiritual practices may improve mood by
reducing depressive symptoms
Braxton et al.
2007
308 HIV-positive black women
living with HIV
• For black women with HIV and living in South-eastern
US, spirituality reduced depressive symptoms
450 subjects (86% male)
• A majority of people living with HIV reported having
significant depressive symptoms
• Poorer health status and perceptions, less social support
and lower spiritual well-being were related to significant
depressive symptoms
Literature review of the
associations reported among
spirituality, mental health, and
health-related quality of life for
HIV-positive women diagnosed
with depression
• HIV-positive women are disproportionately affected by
depression, compared with male counterparts
Yi et al. 2006
•
Damida SG
2006
28
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Effect of spirituality on adherence
•
•
•
Spiritual / mind–body beliefs are related to
treatment decision-making and adherence in
people living with HIV
~ Acting as both barriers and motivators
Mind-body beliefs may result in enhanced
adherence
Those believing that health is controlled by a
‘Higher Power’ were more likely to refuse ART
29
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Summary
•
•
•
Spiritual activities may be related to beneficial
clinical outcomes
Spiritual activities have a positive effect on
emotional health and wellbeing and outcomes
The effect of spirituality on adherence can vary
30
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Engaging with Faith
Leaders and Faith-Based
Organisations
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Engaging with faith leaders
•
Faith leaders can be powerful advocates, role
models and educators, and have good access to
the ‘ear’ of their community
• Faith leaders are willing to help with HIV-related
issues, but may need support
• As a faith leader
~ What should your role be?
~ How can you talk about sex during services?
~ Lack of recognition by other agencies
32
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Benefits of engaging with faith
leaders
•
•
There are many organisations which take a faithbased approach to HIV
Many of these have projects and resources aimed
to educate faith leaders and to help them:
~ support members of their congregation living with HIV
~ educate the community and therefore reduce stigma
against people living with HIV
~ elicit meaningful discussions during services
~ encourage openness among their congregation
33
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HIV and religion/beliefs initiatives
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African HIV Policy Network (AHPN)
•
•
•
An alliance of African community-based
organisations and their supporters
Working for fair policies for people living with
HIV/AIDS in the UK, providing training, support,
research and information
Through the National African HIV Prevention
Programme (NAHIP) the AHPN has developed
resources for Christian and Muslim faith leaders
and African community-based organisations
35
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AHPN: Breaking the Loud Silence of
HIV
Part of the AHPN ‘Changing Perspectives’ campaign
• Toolkit (DVD and manual) for Christian faith leaders to
use during services and workshops
• Includes contributions from a vast network of people
living with HIV, including faith leaders and other
individuals willing to speak openly about their status
• Designed to encourage discussion about
various aspects of HIV including stigma,
testing,
transmission, support and living positively
•
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Faith based organisations: an important
source of information for faith leaders
•
Caritas (Catholic Church)
~ takes a holistic approach to the disease, focusing on the
physical, intellectual and spiritual needs of the person
~ Caritas International is lobbying for child-friendly HIV and
AIDS medicines
•
Presbyterian AIDS Network
~ welcomes those who advocate and care for persons and
families who have been infected or affected by HIV/AIDS
~ encourage the Church to live out Jesus' ministry of love and
justice
37
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Faith based organisations: an important
source of information for faith leaders
•
London Ecumenical AIDS Trust
~ provides practical home-based support to people living with
HIV/AIDS within areas of London
• HIV awareness and training workshops
• advocacy and advice for African people living within the
area
• volunteering opportunities within church/synagogue
communities, linking in with retraining and 'Back to
Work' initiatives
38
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Strategies For Hope Trust (SFHT)
•
•
•
A UK charity which works in collaboration with many
organisations in Africa, Asia, Europe, North America & the
Caribbean to promote positive thinking and practical action in
the field of HIV/AIDS care, support and prevention,
particularly in sub-Saharan Africa
Free study books focusing on aspects of HIV in Africa/Asia
'Called to Care' booklets for church leaders
39
39
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Tearfund
•
•
Tearfund is a leading relief and development charity,
working in partnership with Christian agencies and
churches worldwide
Tearfund tool for faith leaders: ‘Right here Right
now: How your church can take action to help
people living with HIV’
~ Provides practical steps to help churches address
issues faced by people living with HIV in their
community
~ Guidance on how to lead a prayer meeting/service
40
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Christian Aid
•
•
Christian Aid is a leading British and Irish
organisation, their work is founded on the Christian
faith
Christian Aid provides community-based care and
support by working with local grassroots
organisations to:
~ Prevent HIV transmission
~ Overcome the stigma and discrimination attached HIV
41
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Christian Aid
•
•
Christian Aid has moved away from the previous ‘ABC’ approach
to prevention: Abstinence, Be faithful, Condom use
Now provides holistic prevention of HIV through the more
comprehensive ‘SAVE’ approach, developed by their African
partner organisation ANERELA+:
•
•
•
•
•
S – Safer practices
A – Available medication
V – Voluntary counselling and testing
E – Empowerment
SAVE incorporates key elements of ABC but also:
•
Provides information on non-sexual modes of transmission, testing,
care and support
• Diminishes misconceptions that HIV is only sexually transmitted
• Decreases the stigma and discrimination surrounding HIV
• Recognises that ‘HIV is a virus….not a moral issue’
42
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Engaging with beliefs,
faith and religion as part
of medical and pastoral
care
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How should spirituality be
incorporated into care plans in HIV?
•
•
•
Understanding and acknowledging spiritual health
is crucial for effective treatment, care and
prevention initiatives
A multi-dimensional approach represents the best
plan of care for addressing depression among HIVpositive women
Provision of holistic care requires that healthcare
professionals and faith leaders are familiar with the
association of spiritual issues with depression
44
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Faith leaders
•
Faith leaders can be powerful role models within
their community
~ respected as a credible source of advice and guidance
~ influencing perceptions
~ encouraging support of congregation members
•
Using the resources available to enhance
understanding and provide training will result in
faith leaders taking an active role in the support of
women living with HIV
45
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A routine part of consultation with
healthcare professionals
•
•
•
Spirituality and religion should be discussed routinely
and regularly with women living with HIV, providing
they are happy to discuss it
Healthcare professionals often feel that they lack time
and experience when discussing the importance of
spirituality in coping with HIV
Should be part of the standard consultation approach
so the woman living with HIV does not feel
uncomfortable
46
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A routine part of consultation with
healthcare professionals
•
•
•
•
Women living with HIV may need ‘permission’ to start
to talk about spirituality in the healthcare setting
Clinicians need to be aware of how to discuss
faith/religion with women living with HIV, even if they
are not religious themselves
Clinicians must remain impartial when discussing
beliefs and faith with the person living with HIV
The FICA tool can help overcome these obstacles
(see next slide)
47
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Spiritual assessment using the FICA
tool
The FICA tool (Faith, Importance, Community, Address in care) is designed
to facilitate the physician in encouraging discussion with patients regarding
their faiths and beliefs
Importance And Influence
• What importance does faith have in your life?
Yes
Faith And Belief
Do you consider
yourself to be a
spiritual or
religious
person? What is
your faith or
belief?
• Have your beliefs influenced the way you take care of
yourself and your illness?
• What role do your beliefs play in regaining your health?
Community
• Are you a part of a spiritual or religious community?
• Is this of support to you and how?
Yes
• Is there a group of people you really love or who are
important to you?
• Communities such as churches, temples, synagogues or
masjids can serve as a strong support system for some
patients
48
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Puchalski C & Romer AL. J Palliat Med 2000; 3:129-137.
Spiritual assessment using the FICA
tool
The FICA tool (Faith, Importance, Community, Address in care) is designed
to facilitate the physician in encouraging discussion with his patients
regarding their faiths and beliefs
Faith And Belief
Do you consider
yourself to be a
spiritual or
religious
person? What is
your faith or
belief?
Address In Care
Yes
• How would you like me to address these issues
in your healthcare?
No
• No Further Questions
49
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Puchalski C & Romer AL. J Palliat Med 2000; 3:129-137.
Implications of medical and pastoral
care on the lives of women living
with HIV
•
•
•
•
Healthcare professionals can actively engage with
religion in peoples lives
Faith leaders are well placed to engage with health
related aspects of their congregation
Both groups may need further training and support
to develop these roles
Understanding is crucial for effective treatment,
care and prevention initiatives
50
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Beliefs and practical
implications of different
religions
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Beliefs and practical implications
in HIV: Contraception
BUDDHISM
CHRISTIANITY
HINDUISM
Some consider contraception as acceptable if it prevents conception
Protestant – May be acceptable, if not used to encourage or permit promiscuity
Roman Catholic – Generally do not approve of artificial contraception
No ban on birth control
Some scriptures include advice on promoting conception – providing
contraceptive advice to those who want it
ISLAM
Sexual ethics tend not to permit sex outside marriage so its teachings about
birth control should be understood in the context of husband and wife
JUDAISM
Methods of contraception generally allowed include the contraceptive pill and
the IUD
52
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Beliefs and practical implications
in HIV: Fasting
CHRISTIANITY
HINDUISM
ISLAM
JUDAISM
Sometimes practiced by certain Christian denominations, e.g. Lent in the
Catholic church
Can be an integral part of the Hindu religion
Different kinds of fasts based on personal beliefs and local customs
Often practiced in Islam
Ramadan – abstain "completely" from foods, drinks, intercourse and smoking,
from before the break of the dawn until sunset for the month long period
May mean completely abstaining from food and drink, including water
Brushing teeth may be forbidden on major fast days, e.g. Yom Kippur
Taking essential medications is generally not permitted
53
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Beliefs and practical implications
in HIV: Gender & sexual practices
CHRISTIANITY
HINDUISM
ISLAM
JUDAISM
Within Christianity, the Anglican community is generally divided on the issue of
homosexuality
Hindu marriage is considered to be the joining of two individuals for life
Polygamy is permitted for men in some Muslim societies
Marriage is considered the ideal state of personal existence
A man without a wife, or a woman without a husband, is considered incomplete
54
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Case studies
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Case study: Culture, belief and faith
in HIV, Christine's story
•
•
•
Christine, a 35 year old African woman living in
Europe with her husband
~ Christine is HIV+, husband is HIVChristine became pregnant by self insemination
~ Her child died before delivery
In her culture women are not allowed to
grieve when a child is lost as it is believed that
~ the dead child will come back while you are
grieving
~ the next child may also die
How did Christine cope with her situation?
56
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Case study: Culture, belief and faith
in HIV, Christine's story
•
•
Christine confided in her mother who reassured her
that she should grieve like a European woman and
nothing bad will happen
This advice encouraged her to join a group for
bereaved parents which has helped her cope with her
loss and develop a more positive outlook on her
future
How can Christine be supported with her grief?
57
The outcome of Christine's story
•
•
Christine wants to get pregnant again and is
receiving counselling
Her main issue in counselling is her trust in God that
the health of her next baby is in his hands
~ She must be supported not to mistrust her body which she
thought has failed her
•
She believes that God has given her the task to be
responsible for her own health
58
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Case study: Fasting and religious
beliefs in HIV, Sadiyah’s story
•
HIV+ Islamic woman
approaching the Ramadan
fasting period
~ Disclosed with religious
community
•
Stops taking medication
during fast times
~ Believes that God will take care
of her
59
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The outcome of Sadiyah’s story
•
Physician learns of lack of adherence
~ Discussion is facilitated through the use of
the FICA tool
~ Her physician encourages the woman to
approach her faith leader
•
Following discussion with her faith leader and
physician the importance of medication
adherence is recognised
60
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Case study: Gender imbalance and
religious beliefs in HIV
•
Woman aware of her HIV+ status and disclosed
within her
~ Family
~ Close religious community
•
Husband receives a positive diagnosis
• Domestic violence as he ‘blames’ his wife for his
diagnosis
How can the physician help the woman to recognise
the importance of turning to religion for support?
61
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Thank you for your
attention
Any questions?
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