Like a prayer The role of spirituality and religion for people living with HIV in the UK

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Slide 1 : Like a prayer: The role of spirituality and religion for people living with HIV in the UK Dr Damien Ridge (School of Integrated Health, UoW) Dr Ian Williams (Royal Free & University College Medical School) Dr Jane Anderson (Homerton University Hospital) Dr Jonathan Elford (City University London) See full paper: Damien Ridge, Ian Williams, Jane Anderson, Jonathan Elford (2008) Like a prayer: the role of spirituality and religion for people living with HIV in the UK Sociology of Health & Illness 30 (3) , 413–428 doi:10.1111/j.1467-9566.2007.01062.x
Slide 2 : 2 Background HIV 40,000 people now living with HIV in UK Mostly white gay men & black African people Gay men acquire HIV in the UK Black African people acquire HIV in Africa Overwhelming majority of black African people religious Many gay men at least spiritual Sociology background Religion ~ social institution organising spiritual beliefs, practices and communities Spirituality ~ quest to understand & attribute meaning to life & sacred (Koenig et al 2001, Miller & Thoreson 2003)
Slide 3 : 3 Sociology of religion & spirituality Complex constructs Early sociology (Marx, Durkheim, Weber): religion ~ illusion Western progress ~ increasing secularisation Religious revival & de-secularisation (Lambert 2004) Religion & Western culture entwined (Davie 2007) Rise in importance of patient narratives ~ difficult to skip over personal existential concerns (Hyden 1997) Treat spiritual narratives just like other ‘meaning-making’ narratives? e.g. gender, sexuality (Davie 2007)
Slide 4 : 4 Prayer & health Prayer and meditation ~ also complex constructs Prayer = vertical communication, verbal or contemplative, structured or freely composed Meditation = concentration & contemplation, a form of prayer (Roberts et al. 2006, Cochrane review), e.g. mindfulness, can be secular Health & spirituality: Many studies show a positive link between health & spirituality/religion (e.g. Koenig 2000; Thoresen & Harris 2000, Stanton et al. 2000). Possible mechanisms: e.g. increase hope, associated social support, helpful ethics for living, clear rules But, religion-spirituality-health link still not well understood
Slide 5 : 5 Current research Need for research on processes linking spirituality and welbeing Current research not concerned with ‘objective’ measures Instead, ‘How are spiritual narratives woven into stories of people living with HIV, and how do these narratives influence coping?’ What is the role of prayer as a narrative device? How does prayer affect subjectivities?
Slide 6 : 6 Methods A ‘DIPEx’ project – patient experiences of health conditions www.dipex.org/hiv Participants > 18 y/o, diagnosed with HIV In-depth interviews: 19 black African people (9 heterosexual men, 10 heterosexual women), one Eastern European heterosexual man 24 gay men (20 white UK and Irish) Focus groups: 3 group interviews (black African people, 1 X male, 2 X female) Sample: Recruited from variety of avenues e.g. HIV clinics, peer support groups, newsletters, Internet Maximum variation sample (e.g. length of Dx, locale, social class, age)
Slide 7 : 7 Methods Interviews: 44 open ended, in-depth interviews, clarified with focus groups ‘life journey’ approach, use of topic guide 60 – 180 minutes All fully transcribed and checked MAXqda software Modified grounded theory approach to analysis = analytical induction and use of general theory All authors involved in debating final analysis
Slide 8 : 8 Findings… Black African people: deeply spiritual/religious Rely on religion/prayer to cope with often severe difficulties Navigate high levels of misinformation/stigma Adept at gaining support and leaving the rest… Unconditional compassion of Jesus narratives important: ‘God has not cast you out because of your condition. God loves everybody… The lepers were just at almost the same situation as ours… Jesus (put) out a hand and took them on.’
Slide 9 : 9 Findings cont… Gay men: Recovering from the wounding messages of religion Deploy discourses for self-defence e.g. science, non-homophobic God Misgivings about religion Yet, many do not reject spirituality or all that religion could offer Use of New Age discourses ‘…spirituality is that being, belonging… knowing there’s a reason but you don’t know what the reason is… being able to live in harmony with everything else…’
Slide 10 : 10 Findings cont… Role of prayer and meditation: 6 level typology: 1. Simulated counselling 2. Constructing a compassionate ‘life scheme’ 3. Interrupting negative rumination 4. Promoting mindfulness 5. Promoting positive thinking 6. Getting results
Slide 11 : 11 Findings cont… Simulated Counselling Talking about HIV in general seen as essential: ‘Talk. Talk. Talk. Talk until you are blue in the face. Then talk again.’ Prayer constructed as simulated counselling: ‘I think when you pray, usually you feel relieved that you’ve talked to someone.’ Talking to self = anxiety Talking to higher power = reduced anxiety Special counselling benefits e.g. ‘invisible hand’ of protection
Slide 12 : 12 Findings cont… Simulated Counselling “…. there’s that invisible hand, that support, that you feel, there’s that further support there…. And when you’ve had a pray and you can calmly reflect you know… you feel the sort of calm, you sort of feel calm. And knowing that somebody else is sort of looking after you it’s not just you and your wife… There’s another being that’s looking after… looking over your family and stuff and it’s not just yourself and your wife and your child.” – Black African Male
Slide 13 : 13 Findings cont… Constructing a compassionate ‘life scheme’ Heuristic cognitive framework to interpret life events Construct universe as ultimately ‘just’ Context of extreme hardship & limited options for black Africans Favourable outcomes from prayer Elevation of prayer as the most effective approach (black Africans) Falls from grace & re-entry
Slide 14 : 14 Compassionate life scheme cont… “…I used to pray, I used to get angry with God. Say ‘Why, why, why me? Why my, especially my child, why my child,” you know what I mean? And then I stopped. Then I used to, then I went through a phase where I was trying to ask the impossible, I was asking for miracles. Yeah? Which was, you know can you get rid of this thing [HIV] for…. can you get rid of this thing? And then, now I've stopped all that. Now I just say just keep us safe, healthy, as long as we’re healthy we are fine…. That’s all I care about, when I see my child at church playing and stuff and he’s healthy and stuff I think that’s good. That’s good enough for me.” – Black African Male
Slide 15 : 15 Findings cont… Interrupting negative rumination Negative rumination = destructive, repetitive, (often unconscious), stories (Segal et al. 2002) CBT says: rumination -ve mood, depression Prayer/meditation ~ removes –ve rumination E.g. Using the Rosary to break rumination:
Slide 16 : 16 Interrupting -ve rumination cont… “This mind person exists, like I talk, and somebody else is talking to me in my mind. It's happen during at nights. I won't sleep. I'll talk to myself. And I will answer. The person who is responding to me, it is me, but it's in my mind. But it's always negative. If I say, 'Why do I have to kill myself?' Then, then, I hear another voice say, 'Yes, you have to kill yourself because you're, you are, you are dirty, you are virus, you can't change anything yourself.' For some… I don't know. I don't know. I do lots of pray. I read the Rosary and everything. I have some courage… I stop having a conversation with myself.” – Asian Gay Male, Mid 30s
Slide 17 : 17 Findings cont… Mindfulness Mindfulness discourse & practice discussed by gay men e.g. living now, focus on quality of life Draws from New Age discourses ‘Yes by all means think about who you are going to send Christmas cards to. Or who you are not going to send Christmas cards to. But only actually worry about it when you're doing the writing. Plan next January's holiday by all means. But enjoy the planning, because now is the time you're doing it. The holiday might never arrive!’ – white gay male Reported benefits of mindfulness e.g. (ironically) a better future
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