ECONOMIC AND SOCIAL RESEARCH COUNCIL
END OF AWARD REPORT

For awards ending on or after 1 November 2009

This End of Award Report should be completed and submitted using the grant reference as the email subject, to reportsofficer@esrc.ac.uk on or before the due date.

The final instalment of the grant will not be paid until an End of Award Report is completed in full and accepted by ESRC.
Grant holders whose End of Award Report is overdue or incomplete will not be eligible for further ESRC funding until the Report is accepted. ESRC reserves the right to recover a sum of the expenditure incurred on the grant if the End of Award Report is overdue. (Please see Section 5 of the ESRC Research Funding Guide for details.)

Please refer to the Guidance notes when completing this End of Award Report. 

Grant Reference	RES-000-23-1488	
Grant Title	British Pakistani Moslems, infertility and the new reproductive technologies: An ethnographic study of contemporary attitudes and responses	
Grant Start Date	01/10/2006	Total Amount Expended:	£178,279.34	
Grant End Date	31/12/2010			
Grant holding Institution	Durham University	
Grant Holder	Professor Robert Simpson	
Grant Holder’s Contact Details	Address	Email	
	Department of Anthropology
Durham University
Dawson Building
South Road
Durham
DH1 3LE	robert.simpson@durham.ac.uk	
		Telephone	
		0191 334 1619	
Co-Investigators (as per project application):	Institution	
Dr. Kate Hampshire	Durham University	
Dr Nazalie Iqbal [replaced by Dr Mwenza Blell – see below]		

1. NON-TECHNICAL SUMMARY

Please provide below a project summary written in non-technical language. The summary may be used by ESRC to publicise your work and should explain the aims and findings of the project. [Max 250 words]

This project explores the impacts of infertility on the lives of British Pakistani Muslims. Infertility carries particular stigma among this group and one of the main aims of the project was to understand the management of infertility in the context of changing patterns of family and kinship, in light of the increasing availability of New Reproductive Technologies (NRTs).    

In phase one of the study, 91 interviews were carried out with individual men and women. We collected reproductive histories in order to situate infertility within the full range of experiences of family formation among British Pakistanis.  In phase two, in-depth interviews and life histories were carried out with 15 individuals who were seeking or who had recently used fertility treatment.  

Our interviewees had a wide range of ways of explaining and solving fertility problems.  Biomedical understandings and treatments were common and often mixed with traditional causalities [eg fate and sorcery] and treatments [eg herbal remedies].  NRTs are becoming more common but concerns appear to centre on use of donor gametes, despite the fact that this is not a necessary part of IVF or other treatments. Secondary infertility presents a particular problem for British Pakistanis because of the idea that it is an important responsibility of parents to give their children siblings.  This desire to avoid leaving their children without siblings spurred some participants on to spend large sums on private IVF treatment since couples with any living children cannot receive NHS funding for IVF treatment. 

2. PROJECT OVERVIEW

a) Objectives
Please state the aims and objectives of your project as outlined in your proposal to the ESRC. [Max 200 words]

The principal aim of this project is to investigate the ways in which British Pakistani Muslims understand and negotiate involuntary childlessness with particular reference to the solutions offered by the new reproductive technologies.

The objectives of the research are as follows:
1.	To understand how infertility of various kinds and degrees is situated within the full range of experiences of family formation among British Pakistanis.
2.	To identify the personal and social implications of involuntary childlessness for Pakistanis living in Britain at the present time.
3.         To describe the various response that members of the community have to this condition. 
4.	To investigate the ways in which British Pakistanis are engaging with possibilities for treatment that are offered by NRTs?
5.	To explore the ethical and religious discourses that currently surround NRTs which enable and facilitate the ethical accommodation of some practices and the rejection of others 
6.          To canvass the views of medical professionals performing treatments for British Pakistani Muslim couples facing fertility problems
7.          To use the data and analysis produced to inform policy and practice, and particularly as these relate to the development of culturally appropriate interventions and treatment among ethnic minority groups.  

b) Project Changes
Please describe any changes made to the original aims and objectives, and confirm that these were agreed with the ESRC.  Please also detail any changes to the grant holder’s institutional affiliation, project staffing or funding. [Max 200 words]

The project faced a significant challenge one year after it started, and shortly after fieldwork had commenced, when the project research assistant became seriously ill and eventually had to resign from the project on the grounds of ill-health in 2009.  The ERSC were fully apprised of the details of the illness and its consequences for the project [see confidential letter attached].  Essentially, the project was suspended for over one year and the completion date of the project revised.  However, this delay did not fundamentally change the objectives of the project.  Mwenza Blell joined the project in March 2009 and enabled us to see the project through to its successful completion. 

The original sample size for phase II was 20-30.  However, recruiting patients in the hospital whilst at the same time adhering strictly to the terms of our ethics approval, as well as the terms of data protection measures in place through the HFEA meant that recruiting the hospital sample was extremely difficult and slow.  In the event, we were able to recruit 15 couples who had experience of interventions involving the new reproductive technologies.  Many of these couples were interviewed more than once and some three times for case study purposes.  

c) Methodology
Please describe the methodology that you employed in the project. Please also note any ethical issues that arose during the course of the work, the effects of this and any action taken. [Max. 500 words]

Data were collected over two phases:
Phase I was conducted in and around two conurbations in the North-East of England and consisted of 91 interviews with women and men of different ages and reproductive statuses.  The interviews  covered reproductive life histories and focused on topics such as:  the experience of family formation, the role of the wider community in decisions about family planning/ formation,  attitudes towards infertility and views on  the solutions available [bio-medical and non-bio-medical]. Recruitment for Phase I was done using a snowballing technique as well as during participant-observation in community centres, Sure Start children’s centres, taxi ranks and Asian cloth shops.
  
Phase II involved in-depth interviews with individuals or couples who were identified as undergoing, or who had recently undergone, fertility treatment.  Phase II participants consisted primarily  of patients attending a Department of Reproductive Medicine within an NHS hospital on Teesside.  British Pakistani patients were recruited when they came into the hospital for their consultation.  At this point they were given information about the study and asked whether they would be agreeable to an interview at a later date; those who consented were interviewed in their homes.  Nine participants were recruited in this way. Because recruitment through the hospital was slow, the sample was augmented with two participants recruited via internet infertility forums and an additional four participants living in London, via snowball sampling which resulted in links to 4 participants in London [a total of 15 participants].  Four of the Phase II participants whose infertility treatment was ongoing were interviewed more than once over the course of the study.  Phase II  interviews produced detailed informant-led narratives describing the experience of undergoing infertility treatment.  Themes arising out of these narratives which were pursued by the researcher included: the experience of engagement with infertility professionals, wider community attitudes to use of the NRTs by Pakistani Muslims, attitudes to use of gametes [own and third-party],   inter-generational differences in attitude, consequences of the use of NRTs for Pakistani ideas of kinship and conjugality, the role of Islam in providing guidance for those using NRTs. This aspect of the research was also supplemented by periods of participant observation carried out within the clinic and which engaged with the work of clinicians, nurses and secretaries.  

The 15 case histories generated from these interviews were further supplemented by interviews with six members of staff from the Reproductive Medicine Department where most of the couples were treated; these included consultants, embryologists, a nurse, and a counsellor.  Other key informants in Phase II included two professionals of Pakistani origin: a GP from the area and a social worker working in an agency which specialises in ethnic minority adoption and fostering in the North East. All interviews were audio recorded with consent, transcribed, and then entered into NVivo software for thematic coding. 

d) Project Findings
Please summarise the findings of the project, referring where appropriate to outputs recorded on ESRC Society Today. Any future research plans should also be identified. [Max 500 words]
Reproductive disruptions manifest themselves in multiple ways among this British Pakistani community. While only a small minority of the Phase I interviewees had been diagnosed with infertility or had sought biomedical treatment, many more had experienced real or feared disruptions to their reproductive careers. Many interviewees highlighted the relational nature of infertility with expectations and aspirations about early family-building wider family and community [for example, an obligation to produce a son, the need for an appropriate gender balance, anticipation of future marriage arrangements which may be affected by gender imbalanced families or disability all in order to ensure a wider sense of continuity ]. These eventualities can result in forms of ‘social’ infertility as couples are seen to be ‘failing’ to fulfil their child-bearing obligations. 

Couples who fail to achieve a pregnancy within a few months may be subject to intense scrutiny and suspected of being infertile. After the birth of one or two children, there is pressure to have another pregnancy quickly. However, the imperative to provide both brothers and sisters for offspring makes ‘social’ infertility a major issue for this population. Protracted periods of infecundity within an otherwise ‘normal’ reproductive career can, therefore, be the source of considerable anxiety.

A prevailing assumption among interviewees that women are generally to blame for childlessness means that they typically bear the brunt of any associated negative social consequences, although this appears to be changing in the younger generation. Many interviewees recounted cases of husbands coming under pressure to re-marry or enter into polygamous marriages as a response to suspected infertility, and wives under pressure to accept this.  Childless women continue to be the object of community gossip and ridicule, sometimes leading to social isolation particularly in later years. 

Most interviewees were familiar with biomedical explanations for infertility, although specific knowledge of the different treatments available was more variable. Biomedical accounts were often presented with other  explanations, [eg sorcery, ayurvedic beliefs about hot/cold properties of the body, the role of fate and God’s will]. Diversity of explanatory systems was reflected in the eclectic approaches taken to deal with actual or suspected infertility. Biomedical treatments were sought in combination with other responses: prayer, pilgrimage, consulting religious figures and herbalists, and adoption. Significantly, these strategies typically involved the transnational movements of people, ideas and medicines. 

Phase I interviews suggest that while most people knew of NRTs, there was still relatively little knowledge about what different treatments entail. Older people were less approving of NRTs, which were often framed within a discourse of moral decline. Concerns about NRTs often centred on use of donor gametes and violation of Islamic prohibitions relating to adultery . Many people who had not undergone infertility treatment personally were unaware that gamete donation is not a necessary part of IVF or ICSI. Finally, the desire to avoid single-child families spurred some participants to invest heavily in private IVF treatment since couples with any living children cannot receive NHS funding for IVF treatment. 	

e) Contributions to wider ESRC initiatives (eg Research Programmes or Networks)
If your project was part of a wider ESRC initiative, please describe your contributions to the initiative’s objectives and activities and note any effect on your project resulting from participation. [Max. 200 words]

	

3. EARLY AND ANTICIPATED IMPACTS

a) Summary of Impacts to date 
Please summarise any impacts of the project to date, referring where appropriate to associated outputs recorded on ESRC Society Today. This should include both scientific impacts (relevant to the academic community) and economic and societal impacts (relevant to broader society). The impact can be relevant to any organisation, community or individual. [Max. 400 words]

Academic impacts:  Early attempts to conceptualise the issues in this project resulted in a contribution to an edited collection that examined the relationship between kinship, law and social policy in the UK (see Iqbal. & Simpson, 2006).  The volume was the result of the project’s contribution to a workshop held by the Cambridge Centre for Family Studies which brought together a wide range of academics and practitioners [ibid].

Results of the project have been presented at a number of important academic fora including the International Wellbeing and Place Conference, held at Durham University, April 2009 [see Hampshire, K., M. Blell and B. Simpson: 2009] and the 24th Annual International Pakistan Workshop, UK [Blell, M., B. Simpson, K. Hampshire 2010]. 

Social / stakeholder impacts:  
•	The primary feedback event was a colloquium held in Durham on 9th December and entitled ‘Reproduction, technology and ethnicity: transnational perspectives on infertility and its treatment’. The event brought together academic researchers and a targeted group of infertility healthcare practitioners from the UK and Europe [see Organised Event 14th March 2011]. In the colloquium, the results of the present study were presented (in a paper entitled ‘British Pakistanis and infertility – IVF, secrecy and the supernatural’  see Presentation 21/03/11) alongside the results of other researchers working on similar topics.  
•	Asian [in]fertilities:  Throughout the project we have hosted a website containing details of the project, outputs and news.  Google Analytics and Durham University server logs reveal that  there has been a steady increase in page hits from 1980 in June 2009 to a peak of 18.5k in September 2010. The biggest single source of access was Google India, suggesting the project has, at the very least, had visibility in the Asian sub-continent. Consideration of the list of those accessing suggests many advocacy and Non-governmental organisations have accessed the site. 
•	We organized a stall at a public event in Newcastle-upon-Tyne called Researchers Revealed as part of the EC's Researcher's Night 2009 Programme at which Mwenza talked to members of the public about the present study
•	We submitted an entry into a poster competition to encourage public understanding of science [see ‘British Pakistani Muslims’ attitudes and responses to infertility and in vitro fertilization (IVF)’ under other output].   Mwenza stood with the poster and discussed the results of the study with university staff, students, and members of the public. 	

b) Anticipated/Potential Future Impacts
Please outline any anticipated or potential impacts (scientific or economic and societal) that you believe your project might have in future. [Max. 200 words]

•	We are in negotiation regarding an edited volume [Reproduction, technology and ethnicity: transnational perspectives on infertility and its treatment ]  based on the colloquium and which will bring together contributions from leading scholars in anthropology, public health and other social sciences, with medical practitioners who work in hospital-based infertility units in ethnically-diverse areas. We have approached and received positive feedback the editors of the Fertility and Reproduction series published by Berghahn and are currently preparing a formal book proposal.
•	Journal papers in preparation:  
o	Hampshire, K.R., M.T. Blell and B. Simpson. Navigating new socio-demographic landscapes: using anthropological demography to understand the ‘persistence’ of high and early fertility among British Pakistanis. Under review for Population and Development Review.
o	 ‘Temporal and relational dimensions of infertility among British Pakistanis’ [Medical Anthropology Quarterly]  in prep
o	Infertility, Adoption and the NRTS  [Social Science and Medicine]
o	NRTs, Modernity and ethnicity [Biosocieties] in prep
•	A translation of selected IVF information for dissemination on the website and via  DVD.
•	Release of executive summary of the findings of the research to be sent to relevant websites (infertility support sites, charities, etc.) and newsletters (South Tees Trust, local public health organizations) – [see Other Publication 21/03/11] 

You will be asked to complete an ESRC Impact Report 12 months after the end date of your award. The Impact Report will ask for details of any impacts that have arisen since the completion of the End of Award Report.

4. DECLARATIONS
Please ensure that sections A, B and C below are completed and signed by the appropriate individuals. The End of Award Report will not be accepted unless all sections are signed.
Please note hard copies are NOT required; electronic signatures are accepted and should be used.
A: To be completed by Grant Holder
Please read the following statements. Tick ONE statement under ii) and iii), then sign with an electronic signature at the end of the section.
i) The Project
This Report is an accurate overview of the project, its findings and impacts. All co-investigators named in the proposal to ESRC or appointed subsequently have seen and approved the Report.	√	

ii) Submissions to ESRC Society Today
Output and impact information has been submitted to ESRC Society Today.  Details of any future outputs and impacts will be submitted as soon as they become available.
OR
This grant has not yet produced any outputs or impacts. Details of any future outputs and impacts will be submitted to ESRC Society Today as soon as they become available.
OR
This grant is not listed on ESRC Society Today.	√

	

iii) Submission of Datasets
Datasets arising from this grant have been offered for deposit with the Economic and Social Data Service.
OR
Datasets that were anticipated in the grant proposal have not been produced and the Economic and Social Data Service has been notified.
OR
No datasets were proposed or produced from this grant. 	√

	

SIGNATURE:         

NAME:		Bob Simpson						DATE:  18th March 2011	

B: To be completed by Head of Department, School or Faculty

Please read the statement below then sign with an electronic signature to confirm your agreement.

This Report is an accurate overview of the project, its findings and impacts.

SIGNATURE:       
NAME:  Bob Simpson
POSITION: 		Head of Department 			DATE: 18th March 2011	

C: To be completed by Finance Officer of Grant-Holding Research Organisation 

Please read the statement below then sign with an electronic signature to confirm your agreement.

ESRC funds have been used in accordance with the ESRC Research Funding Guide. All investigators named in the proposal to ESRC or appointed subsequently have seen and approved the Report.

SIGNATURE:
NAME:
POSITION: 							DATE: