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British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

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Page 1: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

British Pakistanis and infertility – IVF, secrecy and the supernatural

Mwenza Blell, Bob Simpson, Kate Hampshire

Page 2: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Infertility and childlessness for British Pakistanis

• British Pakistanis and Bangladeshis have the highest fertility rates currently in the UK

• South Asian women in the UK have a relatively high prevalence of polycystic ovarian syndrome (PCOS) (Rodin et al. 1998)

• Women of South Asian origin less likely to have success in IVF treatment (Palep-Singh et al. 2007; Shahine et al. 2009)

• Voluntary childlessness found to be widely considered unacceptable (Culley et al. 2006)

Page 3: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

British Pakistani Ethnicity and Reproduction

• Ethnic identity as Pakistani a historical development

• Perception of being under threat from the wider society

• Reproduction a key site of ethnic identity maintenance and an area in which religion plays a role in decision making

Page 4: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Our Project3 year ESRC funded multi-site ethnographic

research project in two phases

• Phase I - Situating infertility• British Pakistani men and women of all ages and

marital and reproductive statuses• Participant observation over several months • 86 life history interviews• Teesside – Stockton-On-Tees and Middlesbrough

Page 5: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire
Page 6: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire
Page 7: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Our Project

• Phase II - Seeking infertility treatment• Participant observation and key informant interviews

within a Teesside NHS hospital’s Department of Reproductive Medicine– Key informants

» consultants» nurses» embryologists» an infertility counsellor» a social worker» a local GP

Page 8: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Our Project• In-depth interviews with couples/individuals of Pakistani

origin with experience of fertility, carried out in their homes– Recruited via

» Department of Reproductive Medicine» Online fertility forums» Snowballing through informants’ personal networks in and

around Greater London

Page 9: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Findings

• A wide range of attitudes toward, experiences of, perceived causes of, and solutions pursued for fertility problems– Attitudes toward infertility– Perceived causes of fertility disruptions

• Natural• Supernatural

– Solutions/Responses to fertility problems• Medical

– Biomedical (incl. NRTs) and otherwise• Sociolegal

– Adoption– Divorce / Additional marriage

Page 10: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Attitudes

• The public nature of reproduction coupled with the unacceptability of voluntary childlessness means disruptions to fertility become highly public over time

• Infertile people can find they are stigmatised for their conditions

• Those who live ‘outside the community’ find they can be more open and fear gossip less

Page 11: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Perceived Causes

• A range of explanations were given for the cause of the fertility problems experienced by our participants– Polycystic Ovarian Syndrome (PCOS)– Genital tuberculosis– Iron-deficiency anaemia– Uterine problems– Endometriosis– Problems with sperm– Black Magic and Evil Eye

Page 12: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Reproductive Outcomes and the Supernatural

• Reproductive outcomes in general are commonly described as being ‘up to God’ or ‘Allah ki taraf’– Only God can grant a pregnancy

• Failures or problems (in reproduction or elsewhere) are not attributed to God and instead can be attributed to:– Fate (without reference to God)– Physical causes– Black Magic (kala jaddu) or Evil Eye (nazar)

Page 13: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions

• Biomedicine – treatment of first resort– UK– Pakistan

• Chinese medicine• South Asian ‘home remedies’• Herbal treatments from Arab countries• Religious/spiritual strategies• Adoption/Fostering• Divorce / Additional marriages

Page 14: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions - Medical

• GP Consultant• Pakistani biomedical practitioners• Herbal treatments

– Panch puran (lit. five spices)

Page 15: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire
Page 16: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire
Page 17: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire
Page 18: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions

• Supernatural– Combat/diagnose kala jaddu– Ask God for a child

• Shrines of sufi pirs• Recitation of Surat Maryam

Page 19: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions

• Male vs. Female factor infertility– Some men are resistant to involvement in

testing and treatment because they want to avoid blame since this normally automatically falls on the woman

– Suggestion that the way infertility treatment works in the NHS forces involvement from male partners

Page 20: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions

•Male vs. Female factor infertility

Naseem, a 35 year old British-born woman recounted: “they were putting pressure on me. I thought ‘maybe it is something wrong with me’ and stuff like that...so I went to the doctor and I had tests and he goes ‘you’re fine’ and my doctor, you know, I had him for life and I know him and he said ‘you had tests and everything’s fine you’re working, bits and bobs are working fine’ .... they still thought it was me at the time anyway, then we had to go to Leeds and we had to go to Nottingham to see the special woman...”

Page 21: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions

• Male vs. Female factor infertility

Naseem:“yeah, you had to boil it and cook it and eat it

and then there was this powdery like herbal stuff you had to eat as well, disgusting, foul, and I felt like puking my guts up and then it’s supposed to clean your insides or summat, I don’t know, whatever it was, and I was ... mad... [at] him I said ‘I’m not doing it, it’s too much for you to take it in the morning’...”

Page 22: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions

• Male vs. Female factor infertility

Naseem:at last I said ‘right, after this I am not doing crap all’ I

put my foot down and told him ‘I said I don’t give a shit what they say’, I said ‘I’m not taking them, it’s my body’, I said ‘there’s nowt wrong with my body, it’s you’... and I said ‘I’m not taking any more of this crap, I don’t care what they say’ d’you know what I mean?.... I’m not, I put my foot down and I said ‘I’m not’ I said ‘like it or lump it, I’m not, sod off’ I said ‘I know the problem’s probably you.

Page 23: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions - Medical

• in vitro fertilisation (IVF) / intracytoplasmic sperm injection (ICSI)– Met with some approval and some disapproval –

both from people who knew little about the treatment

– Suggestion that IVF necessarily involves gamete donation

– Treatment hidden from others– Most people believed use of donated sperm was

not permissible but some were not sure about use of donated eggs

– Problems with patient understanding of treatment were apparent

Page 24: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions - Sociolegal

• Adoption– Disagreement over permissibility in Islam– Widely considered to be an option only

pursued after medical options are exhausted (though some who pursued it did not see it that way)

– Concerns about ethnicity/religion of the child paralleling concerns about donated gametes

– Concerns about parda and milk kinship

Page 25: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions

• Secondary Infertility– At least as difficult as primary infertility– Great importance of siblings to social

relationship building– May be less compatible with adoption– May prompt more treatment seeking/further

cycles of IVF - with cost implications

Page 26: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions - Sociolegal• Polygyny, Divorce, Remarriage

– Islamically permissible and considered acceptable by many

– Polygyny in particular may not be as attractive to British-born men

– Divorce is not always about woman blaming, men can be blamed and divorced too

– In some cases polygyny may help women achieve motherhood who otherwise would not

Page 27: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions - Sociolegal

Polygyny

• Asif: she stood by me all the way, and a good job she stand by me because now what’s happened is the four kids live with her and [my second wife] lives separately...So I mean the main thing for a mother is to be called a mother

• MB: Yeah• Asif: And that’s a big thing and when you’ve got, she’s

got four kids now and nobody can tell that or nowt because they’re like that [gestures to show two fingers very close together] with her now like all the time

• MB: Right and they call her Ami [mum] and everything?• Asif: Yeah

Page 28: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Solutions - Sociolegal• Polygyny, Divorce, Remarriage

– Islamically permissible and considered acceptable by many

– Polygyny in particular may not be as attractive to British-born men

– Divorce is not always about woman blaming, men can be blamed and divorced too

– In some cases polygyny may help women achieve motherhood who otherwise would not

Page 29: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Conclusions

• British Pakistanis facing fertility problems attribute these to a wide range of different causes– some based on medical diagnosis and others based more

on the kismetic dimension of South Asian Islam• Many different solutions are pursued and considered by

British Pakistanis– some of which fall broadly in the realm of medicine but

others of which are faith-based or socio-legal strategies for solving the problem of childlessness

• Role of in-laws and existing children important in decision making about infertility treatment

• The relationship between woman blaming and infertility treatment is somewhat paradoxical

Page 30: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire
Page 31: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

Acknowledgements

• Research participants and collaborators• Economic and Social Research Council

(ESRC)

Page 32: British Pakistanis and infertility – IVF, secrecy and the supernatural Mwenza Blell, Bob Simpson, Kate Hampshire

References

Culley L.A., Hudson N., Rapport F.L., Katbamna S., Johnson M.R. (2006) British South Asian communities and infertility services. Human Fertility 9(1): 37-45.

Palep-Singh M., Picton H.M., Vrotsou K., Maruthini D., Balen A. H. (2009) South Asian women with polycystic ovary syndrome exhibit greater sensitivity to gonadotropin stimulation with reduced fertilization and ongoing pregnancy rates than their Caucasian counterparts. European journal of obstetrics, gynecology, and reproductive biology 134(2): 202-207.

Rodin D., Bano G., Bland J., Taylor K. and Nussey S. (1998) Polycystic ovaries and associated metabolic abnormalities in Indian subcontinent Asian women. Clinical Endocrinology 49: 91-99.

Shahine L.K., Lamb J.D., Lathi R.B., Milki A.A., Langen E., Westphal L.M. (2009) Poor prognosis with in vitro fertilization in Indian women compared to Caucasian women despite similar embryo quality. PLoS One 4(10):e7599.

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Additional Slides

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