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Beliefs, Spirituality and HIV: Harnessing benefits and overcoming barriers Women for Positive Action is supported by a grant from Abbott.

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Presentation on theme: "Beliefs, Spirituality and HIV: Harnessing benefits and overcoming barriers Women for Positive Action is supported by a grant from Abbott."— Presentation transcript:

1 Beliefs, Spirituality and HIV: Harnessing benefits and overcoming barriers Women for Positive Action is supported by a grant from Abbott

2 Contents 2 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 Women for Positive Action is supported by a grant from Abbott

3 Introduction Women for Positive Action is supported by a grant from Abbott

4 4 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’ Women for Positive Action is supported by a grant from Abbott

5 5 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’ Women for Positive Action is supported by a grant from Abbott

6 66 Why is spirituality, faith or religion important for women living with HIV? 6 Ironson et al. J Gen Intern Med, 2006; Kremer et al. AIDS Care 2009 Women for Positive Action is supported by a grant from Abbott 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

7 77 Why is spirituality, faith or religion important for women living with HIV? 7 Ironson et al. J Gen Intern Med, 2006; Kremer et al. AIDS Care 2009 Women for Positive Action is supported by a grant from Abbott 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

8 88 Challenges for women living with HIV Parenting, pregnancy, HIV- positive children Diagnosis- related trauma Stigma-related stresses, fear, secrecy Depression, suicidal thoughts /acts, emotional stress Relationships, independence, violence Grief, loss and guilt Medication adherence Ageing and the menopause Disclosure- related stresses Vulnerability for isolation Quality of life with HIV Exploitation and violence Women for Positive Action is supported by a grant from Abbott

9 9 Spiritual changes following HIV diagnosis 37% Intensification of spirituality 71% An increase in spiritual practices 53% More gratitude and appreciation, feeling blessed 39% Kremer et al. AIDS Care 2009 Taking better care of own health 47% Finding meaning and purpose in life 45% Women for Positive Action is supported by a grant from Abbott A change in priorities and the awareness that time is of the essence 50%

10 10 Where can women living with HIV seek support? Family Healthcare professionals Faith-based organisations Places of worship Internally- through spirituality Workplace, and wider social circle Community Friends Women for Positive Action is supported by a grant from Abbott Peer support from other women with HIV Sources of support for women living with HIV

11 The potentially negative – When beliefs, faith, spirituality and religion can be a barrier to managing HIV Women for Positive Action is supported by a grant from Abbott

12 12 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 Women for Positive Action is supported by a grant from Abbott

13 13 Potentially negative impact of faith- based institutions / traditions on women living with HIV 13 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 Women for Positive Action is supported by a grant from Abbott

14 14 Stigma, shame and guilt 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 Zou et al. BMC Public Health 2009 Stigma: “attribute of an individual that is undesirable or discrediting in the eyes of society, thus reducing that individual’s status” Women for Positive Action is supported by a grant from Abbott

15 The positive – What beliefs, faith, spirituality and religion can offer women with HIV Women for Positive Action is supported by a grant from Abbott

16 16 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 Ridge et al. Sociol Health Illn 2008 Women for Positive Action is supported by a grant from Abbott

17 17 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 Women for Positive Action is supported by a grant from Abbott

18 Prayer is the first thing, but you also need support of doctors to push you and make you understand Prayer and decisions about HIV medication Crane et al. AIDS Education and Prevention 2000 I go by what the doctor advises…. take it home and pray about it and do what God wants me to do If I pray, God will give me the right medication and the right people to direct me through this HIV 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 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 Women for Positive Action is supported by a grant from Abbott 18

19 Spirituality Can Help Women Living With HIV To ‘Move On’ Through the construction of a positive ‘life- scheme’ spirituality can provide support “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 Women for Positive Action is supported by a grant from Abbott 19

20 20 Positive impact of faith and spirituality Calmness Feeling of ownership over the future Happiness Support Empowerment Coping Comfort Mindfulness Finding a ‘meaning’ Strength to reach out to others Move into a positive mindset Women for Positive Action is supported by a grant from Abbott

21 Scientific Evidence: Spirituality, Religion and Clinical Outcomes Women for Positive Action is supported by a grant from Abbott

22 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 Women for Positive Action is supported by a grant from Abbott 22

23 23 Spirituality and clinical outcomes Women for Positive Action is supported by a grant from Abbott 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

24 Spiritual activities have a positive effect on wellbeing & emotional health AuthorStudy populationKey Finding Ironson & Kremer people with HIV 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) Fitzpatrick et al adults with HIV in the US (questionnaire-based) 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 Ironson et al Longitudinal study over 4 years in 100 people with HIV 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 Cotton et al people with HIV The longer someone with HIV/AIDS lives, the more likely they are to become more religious/ spiritual Women for Positive Action is supported by a grant from Abbott 24

25 Spiritual activities have a positive effect on wellbeing & emotional health AuthorStudy populationKey Finding Scarinci et al HIV-infected women, average age 43 years, 62% African American A positive relationship was shown between spiritual well- being and number of spiritual practices (praying alone, helping others, and listening to music) used Polzer Casarez 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 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 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 Women for Positive Action is supported by a grant from Abbott 25

26 Spiritual activities have a positive effect on wellbeing & emotional health AuthorStudy populationFindings Peltzer et al 2007 Women living with HIV with history of abuse Women with HIV/AIDS often neglect their health through failure to engage in health-promoting self-care practices Cotton et al people living with HIV People living with HIV with greater optimism, greater self- esteem, greater life satisfaction, minorities, and who drink less alcohol tend to be both more spiritual and religious. Szaflarski et al outpatients with HIV/AIDS from 3 US cities (14% female) 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%) Women for Positive Action is supported by a grant from Abbott 26

27 View of God is critical to outcomes AuthorStudy populationKey Finding Maman et al 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 Ironson et al 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 Women for Positive Action is supported by a grant from Abbott 27

28 Spiritual activities have a positive effect on emotional health AuthorStudy populationKey Finding Perez et al Prospective analysis involving 180 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 HIV-positive black women living with HIV For black women with HIV and living in South-eastern US, spirituality reduced depressive symptoms Yi et al 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 Damida SG 2006 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 Women for Positive Action is supported by a grant from Abbott 28

29 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 Women for Positive Action is supported by a grant from Abbott 29

30 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 Women for Positive Action is supported by a grant from Abbott 30

31 Engaging with Faith Leaders and Faith-Based Organisations Women for Positive Action is supported by a grant from Abbott

32 32 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 Women for Positive Action is supported by a grant from Abbott

33 Benefits of engaging with faith leaders There are many organisations which take a faith- based 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 Women for Positive Action is supported by a grant from Abbott 33

34 HIV and religion/beliefs initiatives Women for Positive Action is supported by a grant from Abbott

35 35 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 Women for Positive Action is supported by a grant from Abbott

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

37 37 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 Women for Positive Action is supported by a grant from Abbott

38 38 Faith based organisations: an important source of information for faith leaders Women for Positive Action is supported by a grant from Abbott 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

39 39 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 Women for Positive Action is supported by a grant from Abbott 39

40 40 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 Women for Positive Action is supported by a grant from Abbott

41 41 Christian Aid Women for Positive Action is supported by a grant from Abbott 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

42 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’ Christian Aid Women for Positive Action is supported by a grant from Abbott 42

43 Engaging with beliefs, faith and religion as part of medical and pastoral care Women for Positive Action is supported by a grant from Abbott

44 44 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 HIV- positive women Provision of holistic care requires that healthcare professionals and faith leaders are familiar with the association of spiritual issues with depression Women for Positive Action is supported by a grant from Abbott

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

46 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 Women for Positive Action is supported by a grant from Abbott 46

47 47 A routine part of consultation with healthcare professionals Women for Positive Action is supported by a grant from Abbott 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)

48 48 Puchalski C & Romer AL. J Palliat Med 2000; 3: Importance And Influence What importance does faith have in your life? Have your beliefs influenced the way you take care of yourself and your illness? What role do your beliefs play in regaining your health? Yes Community Are you a part of a spiritual or religious community? Is this of support to you and how? 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 Yes Spiritual assessment using the FICA tool Faith And Belief Do you consider yourself to be a spiritual or religious person? What is your faith or belief? Women for Positive Action is supported by a grant from Abbott 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

49 49 Puchalski C & Romer AL. J Palliat Med 2000; 3: Address In Care How would you like me to address these issues in your healthcare? Yes No Further Questions No Spiritual assessment using the FICA tool Faith And Belief Do you consider yourself to be a spiritual or religious person? What is your faith or belief? Women for Positive Action is supported by a grant from Abbott 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

50 50 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 Women for Positive Action is supported by a grant from Abbott

51 Beliefs and practical implications of different religions Women for Positive Action is supported by a grant from Abbott

52 Beliefs and practical implications in HIV: Contraception Some consider contraception as acceptable if it prevents conception 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 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 Methods of contraception generally allowed include the contraceptive pill and the IUD BUDDHISM CHRISTIANITY HINDUISM ISLAM JUDAISM Women for Positive Action is supported by a grant from Abbott 52

53 Beliefs and practical implications in HIV: Fasting 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 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 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 CHRISTIANITY HINDUISM ISLAM JUDAISM Women for Positive Action is supported by a grant from Abbott 53

54 Beliefs and practical implications in HIV: Gender & sexual practices Polygamy is permitted for men in some Muslim societies 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 Marriage is considered the ideal state of personal existence A man without a wife, or a woman without a husband, is considered incomplete CHRISTIANITY HINDUISM ISLAM JUDAISM Women for Positive Action is supported by a grant from Abbott 54

55 Case studies Women for Positive Action is supported by a grant from Abbott

56 56 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 HIV- Christine 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 56 How did Christine cope with her situation? Women for Positive Action is supported by a grant from Abbott

57 57 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?

58 58 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 Women for Positive Action is supported by a grant from Abbott

59 59 Case study: Fasting and religious beliefs in HIV, Sadiyah’s story 59 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 Women for Positive Action is supported by a grant from Abbott

60 60 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 Women for Positive Action is supported by a grant from Abbott

61 61 Case study: Gender imbalance and religious beliefs in HIV 61 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? Women for Positive Action is supported by a grant from Abbott

62 Thank you for your attention Any questions? Women for Positive Action is supported by a grant from Abbott


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