Professor Lorraine Culley

Job: Emeritus Professor of Social Science and Health

Faculty: Health and Life Sciences

School/department: School of Applied Social Sciences

Address: De Montfort, University, The Gateway, Leicester, LE1 9BH.

T: +44 (0)116 257 7753

E: lac@dmu.ac.uk

W: http://www.dmu.ac.uk/hls

 

Personal profile

Lorraine Culley is a sociologist by background and a graduate of the Universities of Liverpool (BA, PhD) and London (MA). Her research is focused on social and political aspects of health and healthcare, with a particular emphasis on ethnic and gender inequalities, chronic conditions, social aspects of infertility, reproductive technologies and endometriosis.

Lorraine has particular expertise in qualitative methodologies and in research which explores user perspectives of health and healthcare.

She has held grants from several major funders, including the NIHR and the ESRC. Her work includes over 80 publications and has featured in programmes on BBC World TV, BBC Radio 4, 5 Live, and Asian Network. 

Lorraine has taught courses on sociological aspects of diversity and the sociology of health and illness on a wide range of programmes at DMU and has been a course leader at undergraduate and postgraduate levels. Her academic management experience includes several years as head of the Health Studies Division and she has held a number of faculty and university level appointments.

Lorraine is on the editorial board of the Journal of Research in Nursing.  She is a member of the Children’s Health Forum of the South Asian Health Foundation.

Publications and outputs 

  • Men, chronic illness and health work: accounts from male partners of women with endometriosis
    Men, chronic illness and health work: accounts from male partners of women with endometriosis Hudson, Nicky; Law, Caroline; Culley, Lorraine; Mitchell, H.; Denny, E.; Norton, Wendy; Raine-Fenning, N. Currently dominant in medical discourse, the concept of self‐management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under‐theorised. While self‐management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples’ experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day‐to‐day management. In all, 22 couples participated in in‐depth, semi‐structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork. open access article
  • Reframing egg donation in Europe: new regulatory challenges for a shifting landscape
    Reframing egg donation in Europe: new regulatory challenges for a shifting landscape Hudson, Nicky; Culley, Lorraine; Herbrand, Cathy; Pavone, Vincenzo; Pennings, Guido; Provoost, Veerle; Coveney, Catherine; LaFuente, Sara The first birth from a donated egg was reported in Australia in 1984, ushering in a new era of possibilities for the treatment of infertility (1). Since then egg donation has undergone a number of technical, regulatory and commercial transformations. Its use by a growing and diverse range of social groups and more recently the dawn of advanced freezing technologies, have reconfigured the process. Given the transformation in its organisation and practice, there is a pressing need to map these changes in finer detail and to ask critical questions about the continued fit of existing policy and regulation in this rapidly developing landscape of fertility medicine. In this paper we present a ‘critical reflection’ (2) on developing practices in egg donation, which we suggest are reshaping the character of egg donation as well as raising questions regarding their implications for policy. We highlight a number of policy ‘blind-spots’ relating specifically to information giving and informed consent for egg providers, the emergence and entry of a range of intermediaries and a shift towards certain practices which may see eggs increasingly treated as tradable commodities. We call for a re-contextualising of the debate on egg donation and for renewed attention to the new political economy of egg donation in Europe. The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
  • Factors influencing utilisation of ‘free-standing’ and ‘alongside’ midwifery units for low-risk births in England: a mixed-methods study
    Factors influencing utilisation of ‘free-standing’ and ‘alongside’ midwifery units for low-risk births in England: a mixed-methods study Walsh, Denis; Spiby, Helen; McCourt, Christine; Coleby, Dawn; Grigg, Celia; Bishop, Simon; Scanlon, Miranda; Culley, Lorraine; Wilkinson, jane; Pacanowski, Lynne; Thornton, Jim Abstract Background Midwifery-led units (MUs) are recommended for ‘low-risk’ births by the National Institute for Health and Care Excellence but according to the National Audit Office were not available in one-quarter of trusts in England in 2013 and, when available, were used by only a minority of the low-risk women for whom they should be suitable. This study explores why. Objectives To map the provision of MUs in England and explore barriers to and facilitators of their development and use; and to ascertain stakeholder views of interventions to address these barriers and facilitators. Design Mixed methods – first, MU access and utilisation across England was mapped; second, local media coverage of the closure of free-standing midwifery units (FMUs) were analysed; third, case studies were undertaken in six sites to explore the barriers and facilitators that have an impact on the development of MUs; and, fourth, by convening a stakeholder workshop, interventions to address the barriers and facilitators were discussed. Setting English NHS maternity services. Participants All trusts with maternity services. Interventions Establishing MUs. Main outcome measures Numbers and types of MUs and utilisation of MUs. Results Births in MUs across England have nearly tripled since 2011, to 15% of all births. However, this increase has occurred almost exclusively in alongside units, numbers of which have doubled. Births in FMUs have stayed the same and these units are more susceptible to closure. One-quarter of trusts in England have no MUs; in those that do, nearly all MUs are underutilised. The study findings indicate that most trust managers, senior midwifery managers and obstetricians do not regard their MU provision as being as important as their obstetric-led unit provision and therefore it does not get embedded as an equal and parallel component in the trust’s overall maternity package of care. The analysis illuminates how provision and utilisation are influenced by a complex range of factors, including the medicalisation of childbirth, financial constraints and institutional norms protecting the status quo. Limitations When undertaking the case studies, we were unable to achieve representativeness across social class in the women’s focus groups and struggled to recruit finance directors for individual interviews. This may affect the transferability of our findings. Conclusions Although there has been an increase in the numbers and utilisation of MUs since 2011, significant obstacles remain to MUs reaching their full potential, especially FMUs. This includes the capacity and willingness of providers to address women’s information needs. If these remain unaddressed at commissioner and provider level, childbearing women’s access to MUs will continue to be restricted. Future work Work is needed on optimum approaches to improve decision-makers’ understanding and use of clinical and economic evidence in service design. Increasing women’s access to information about MUs requires further studies of professionals’ understanding and communication of evidence. The role of FMUs in the context of rural populations needs further evaluation to take into account user and community impact.
  • Factors influencing the utilisation of free-standing and alongside midwifery units in England: A Qualitative Research Study
    Factors influencing the utilisation of free-standing and alongside midwifery units in England: A Qualitative Research Study Walsh, Denis; Spiby, Helen; McCourt, Christine; Grigg, Celia; Coleby, Dawn; Bishop, Simon; Scanion, Miranda; Culley, Lorraine; Wilkinson, Jane; Pacanowski, Lynne; Thornton, Jim Objective: To identify factors influencing the provision, utilisation and sustainability of midwifery units (MUs) in England Design: Case studies, using individual interviews and focus groups, in six NHS Trust maternity services in England Setting & Participants NHS maternity services in different geographical areas of England Maternity care staff and service users from 6 NHS Trusts: 2 Trusts where more than 20% of all women gave birth in MUs, 2 Trusts where less than 10% of all women gave birth in MUs and 2 Trusts without MUs. Obstetric, midwifery and neonatal clinical leaders, managers, service user representatives and commissioners were individually interviewed (n=57). Twenty-six focus groups were undertaken with midwives (n=60) and service users (n=52). Main Outcome Measures: Factors influencing MU use Findings: The study findings identify several barriers to the uptake of MUs. Within a context of a history of obstetric-led provision and lack of decision-maker awareness of the clinical and economic evidence, most Trust managers and clinicians do not regard their MU provision as being as important as their obstetric unit (OU) provision. Therefore, it does not get embedded as an equal and parallel component in the Trust’s overall maternity package of care. The analysis illuminates how implementation of complex interventions in health services is influenced by a range of factors including the medicalisation of childbirth, perceived financial constraints, adequate leadership and institutional norms protecting the status quo. Conclusions: There are significant obstacles to MUs reaching their full potential, especially free-standing midwifery units (FMUs). These include the lack of commitment by providers to embed MUs as an essential service provision alongside their OUs, an absence of leadership to drive through these changes and the capacity and willingness of providers to address women’s information needs. If these remain unaddressed, childbearing women’s access to MUs will continue to be restricted. The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. open access journal
  • Re-thinking egg donation in Europe: expanding practice, extending boundaries.
    Re-thinking egg donation in Europe: expanding practice, extending boundaries. Hudson, Nicky; Culley, Lorraine; Coveney, C.; Herbrand, C.; Pavone, V.; Lafuente, S.; Pennings, G.; Provoost, V.; Weis, C. The expansion of the use of donor eggs in fertility treatment has been exponential. Whilst the majority of egg donation historically took place in the US, donor eggs are used in over 56, 000 cycles of fertility treatment per year in Europe and a number of European egg donation ‘hubs’ have emerged, for example in Spain and Cyprus. Growth in the use of donor eggs in part reflects a changing profile amongst users of assisted reproductive technologies, including growing numbers of older women, male same sex couples, and those at risk from genetic conditions. An increasing number of egg donor ‘intermediaries’ such as egg banks and agencies have also emerged in the European context, reflecting a general shift towards an increasingly commercialised landscape around fertility treatment provision. Despite these changes, few studies have specifically considered their implications. Drawing on an ESRC-funded study on the economic, political and moral configuration of egg donation in the UK, Spain and Belgium, we suggest that changes in the ways egg donation is provided in the European context are worthy of increased attention. Data from policy mapping and interviews with policy stakeholders and professionals illustrate significant shifts in professional and commercial practice. These changes are reshaping the intersubjective, political and social boundaries involved in egg donation in novel and complex ways. We suggest that the expansion and diversification of its use has implications for the policy and regulation of egg donation the European context.
  • Egg providers' views on the use of surplus eggs in the UK, Spain and Belgium: implications for information giving and informed consent (POSTER)
    Egg providers' views on the use of surplus eggs in the UK, Spain and Belgium: implications for information giving and informed consent (POSTER) Hudson, Nicky; Culley, Lorraine; Herbrand, C.; Weis, Christina; Coveney, C.; Goethals, T.; Lafuente, S.; Pavone, V.; Pennings, G.; Provoost, V.
  • Qualitative study to identify ethnicity-specific perceptions of and barriers to asthma management in South Asian and White British children with asthma
    Qualitative study to identify ethnicity-specific perceptions of and barriers to asthma management in South Asian and White British children with asthma Lakhanpaul, M.; Culley, Lorraine; Huq, T.; Robertson, N.; McFeeters, Melanie; Manikam, L.; Johal, N.; Hamlyn-Williams, C.; Hudson, Nicky; Bird, D.; Johnson, M.R.D. Objective This paper draws on the data from the Management and Interventions for Asthma (MIA) study to explore the perceptions and experiences of asthma in British South Asian children using semi-structured interviews. A comparable cohort of White British children was recruited to identify whether any emerging themes were subject to variation between the two groups so that generic and ethnicity-specific themes could be identified for future tailored intervention programmes for South Asian children with asthma. Setting South Asian and White British children with asthma took part in semi-structured interviews in Leicester, UK. Participants Thirty three South Asian and 14 White British children with asthma and aged 5–12 years were interviewed. Results Both similar and contrasting themes emerged from the semi-structured interviews. Interviews revealed considerable similarities in the experience of asthma between the South Asian and White British children, including the lack of understanding of asthma (often confusing trigger with cause), lack of holistic discussions with healthcare professionals (HCPs), an overall neutral or positive experience of interactions with HCPs, the role of the family in children’s self-management and the positive role of school and friends. Issues pertinent to South Asian children related to a higher likelihood of feeling embarrassed and attributing physical activity to being a trigger for asthma symptoms. Conclusions The two ethnicity-specific factors revealed by the interviews are significant in children’s self-management of asthma and therefore, indicate the need for a tailored intervention in South Asian children. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. Open access article
  • Women’s experience of social egg freezing: perceptions of success, risks, and ‘going it alone’
    Women’s experience of social egg freezing: perceptions of success, risks, and ‘going it alone’ Baldwin, K.; Culley, Lorraine Abstract Objective: To explore how female users of social egg freezing technology reported their experience of freezing eggs for ‘social’ reasons. Background: Very few studies have explored women’s experiences of social egg freezing. The limited primary research on this topic has suggested that users find the process of freezing eggs emotionally challenging. Methods: Semi-structured interviews were carried out with 31 women who identified as undergoing egg freezing for social reasons. Interviews lasted between 40 minutes and two hours, were audio recorded and transcribed verbatim. Data were analysed using thematic analysis assisted by Nvivo 10. Results: Women employed multiple concepts of egg freezing 'success'. They reported a lack of detailed discussion of post-freezing processes and outcomes in their encounters with clinicians, and, contrary to the recommendations of professional associations, were not given clinic or age specific information. Few perceived freezing as involving physical risks. However, many participants reported the process of egg freezing as emotionally challenging, primarily linked to feelings of isolation and stigma due to their single status Conclusion Participants were generally satisfied with the treatment they received from clinics. However, they expressed a desire for more detailed information about potential outcomes from egg freezing and suggested ways in which clinics might address the emotional challenges of undertaking this process as an unpartnered person. The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
  • Materialising the perfect egg 'donor': examining the work of screening technologies in clinical, commercial and counselling practices
    Materialising the perfect egg 'donor': examining the work of screening technologies in clinical, commercial and counselling practices Hudson, Nicky; Coveney, C; LaFuente, S; Provoost, V; Culley, Lorraine; Herbrand, C; Pavone, V; Pennings, P Within Europe, fertility treatment using donor eggs is increasing, with demand coming from a diverse and growing number of recipients, including older women and gay male couples. Within the EU, the practice is governed by common regulation, which states that human tissue must only be provided within principles of voluntary unpaid donation. However country-level policies and practices vary, and it has been argued that due to increasing demand and varying levels of compensation, there is effectively an unofficial egg market emerging within Europe. Simultaneously, forms of clinical screening – both biomedical and discursive - mean that the reproductive potential of some women are given priority over others within this context. This paper explores how a range of screening and selection techniques work to produce the ideal egg donor. Drawing on policy mapping, marketing analysis, and interview data from clinicians and egg providers in the UK, Belgium and Spain, it considers how professional and policy rationalities, screening tools and the knowledges they produce, materialise a particular construction of the idealised, healthy, altruistic ‘donor’. This idealised donor is typically free from psychological and genetic ‘risks’ and expresses motivations in alignment with the principles of voluntary and unpaid donation and as enshrined within European law. We consider whether these tools and technologies may be part of a set of increasingly commercialised choreographies within egg donation in Europe.
  • Gifting, sharing, donating, helping: tracing discourses of altruism and medical need in clinics' recruitment of egg providers
    Gifting, sharing, donating, helping: tracing discourses of altruism and medical need in clinics' recruitment of egg providers Hudson, Nicky; Culley, Lorraine; Coveney, C.; Lafuente, S.; Herbrand, C.; Provoost, V.; Pavone, V.; Pennings, G. Fertility treatment using donor eggs is a growing phenomenon, with over 40,000 cycles performed across Europe per year. European regulations stipulate that in advertising for women to come forward as egg providers, promotional materials must uphold the principles of voluntary and unpaid donation (VUD). This is interpreted differently between countries with some permitting a range of advertising methods and others limiting or prohibiting any form of advertising relating to human bodily material. This paper examines how egg donation is framed in fertility clinic marketing and recruitment discourse as a particular form of bodily donation associated with the treatment of infertility. It draws on a sample of 58 fertility clinic websites across the UK, Belgium and Spain and analysed using a combination of content analysis and frame analysis. We examine the ways in which clinic marketing materials present a particular version of what egg donation involves and an image of the type of woman who acts as an egg donor. We suggest that clinic websites are important cultural spaces that manage the tensions of the market and the logics of altruism within the European context. We illustrate how the promissory potential of donor eggs and associated ‘cure narratives’ are drawn from a distinctly biomedicalised and individualised imaginary which renders egg provision as a noble and socially essential action. In this way egg donation can be framed as a culturally valued practice that should be separated from the logics of the market.

 

Click here for a full listing of Lorraine Culley's publications and outputs.

Research interests/expertise

  • Social aspects of infertility and reproductive technologies.
  • Diversity, health and healthcare (gender and ethnicity).
  • Endometriosis.
  • User perspectives on health/care.
  • Chronic Illness.
  • Qualitative research methods.

Qualifications

  • BA (Hons) Social Studies University of Liverpool
  • MA (Area Studies) University of London
  • PhD Sociology University of Liverpool

Conference attendance

       Recent keynotes and plenaries:
  • Fertility preservation in the context of delayed childbearing. The Who and Why of ‘social egg freezing’.  Keynote presentation to the Fertility Society of Australia, Annual Conference, Adelaide, Australia, October 2017.
  • Marginalised reproduction and culturally sensitive care. Psychosocial Session. Invited keynote. Fertility Society of Australia Annual Conference, Adelaide, Australia, October 2017.
  •  In/fertility and Uncertainty: the impact of endometriosis on couple relationships. Keynote. Australia and New Zealand Infertility Counsellors Association and Fertility Nurses of Australia Joint Conference. Adelaide, Australia, October 2017.

Consultancy work

Consultancy can be provided in the following areas:

  • Social aspects of infertility and assisted conception
  • Cross border reproductive care
  • Involving users in research
  • Qualitative methods in health research
  • Working with minority ethnic communities

Externally funded research grants information

  • Egg donationEgg Donation in the UK, Belgium and Spain: an interdisciplinary study. Hudson (PI) with Culley, Herbrand, Pennings, Provoost, Pavone. ESRC.  £494,350. April 2017-March 2020. Grant ref. ES/N010604/1.
  • Factors influencing the utilisation of free-standing and alongside midwifery units in England: A Mixed Methods Research Study. 

    Dec 2015 – 2018, NIHR HS&DR Project: 14/04/28 £477,277. 

    Chief investigator: Dr Denis Walsh; Co-investigators: Dr Simon Bishop (University of Nottingham), Emeritus Professor Lorraine Culley (De Montfort University), Dr Miranda Dodwell (City University London), Professor Christine McCourt (City University London), Professor Helen Spiby (University of Nottingham), Professor James Thornton (University of Nottingham), Ms Sonia Byers (North East Ambulance Service NHS Foundation Trust), Dr Jane Wilkinson (NHS West Cheshire CCG), Mrs Lynne Pacanowski (Guys & St Thomas' NHS Foundation Trust).

  • Nurture Early for Optimal Nutrition (NEON) study Jan 2015 – 2019; Principal investigator: Professor Monica Lakhanpaul, University College London
    Partners and collaborators involved: University College London; London Borough of Tower Hamlets; The Parent and Family Support Services in Tower Hamlets; UCL Partners; British Heart Foundation and Newcastle University.

  •  Endometriosis: Improving the well-being of couples (Endopart) Culley (PI), Mitchell, Hudson, Denny, Raine-Fenning (University of Nottingham). ESRC ES/J003662/1. 2012-13.
  • Embedding structured self management education programmes for Type 2 diabetes in a multi-ethnic primary care setting. NIHR Programme Development Grant. Davies (PI), Brennan, Baker, Carey, Culley, Daly, Elster, Gray Johnson, Khunti, Mather, Patel, Speight, Sturt. 2012-13.
  • Research in Children’s Health. Culley, Lakhanpaul, Hudson. University of Leicester/University College London 2011-2012.
  • Transnational Reproduction an exploratory study of UK residents who travel abroad for fertility treatment (Transrep):. Culley (PI), Hudson, Pacey, Blyth, Norton, ESRC RES 000-22-3390. 2009-2011. Collaboration with Universities of Sheffield, Swansea, Huddersfield. See www.transrep.co.uk.
  • Endometriosis and Cultural Diversity (Endocul): improving services for minority ethnic women. Denny, Culley, Papadopoulos, Mann. Department of Health, Research for Patient Benefit Programme. 2007-10. www.endocul.co.uk. Collaboration with Birmingham City and Middlesex Universities, Birmingham Women’s Hospital.
  • Educational experiences of young people with sickle cell disease. ESRC RES 000-23-1486. Dyson (PI), Culley, Atkin, Demaine. 2006-2011. Collaboration with Universities of York and Loughborough.
  • Contextualising patient-centre professionalism in nursing practice: consulting with patients, professionals and stakeholders. Rapport, Doel, Culley, Mooney, Jones, Evans, Maggs, Hutchings. GNC Trust. CI 2009-2010 Collaboration with University of Swansea.
  • Management and Interventions for Asthma in South Asian Children. NIHR Health Services Research 2009-2012 Lakhanpaul, Culley, Johnson, McFeeters, Robertson, Bird. Wilson. Collaboration with University of Leicester and Leicester City PCT.
  • Asthma and South Asian Children; Systematic Review. Asthma UK 2010-2011. Lakhanpaul, Culley, Johnson, McFeeters, Robertson, Bird. Collaboration with University of Leicester and Leicester City PCT.
  • Department of Health, Pacesetters Programme. Evaluation for the East Midlands Region. Johnson, Culley, Fleming 2008-2009. Collaboration with Leicester PCT and Department of Health.
  • Public Perceptions of Gamete Donation in British South Asian Communities (GAMDON). ESRC. 20005-6. Lorraine Culley (PI), Johnson, Rapport, Bharadwaj. RES-160-25-0044. (please link title to http://www.esrc.ac.uk/my-esrc/grants/RES-160-25-0044/read)

Professional esteem indicators

  • Editorial Board Reproductive Biomedicine and Society
  • Editorial Board, Journal of Research in Nursing
  • ESRC Peer Review College
  • ESRC Rapporteur End of Award Reports
  • Reviewer of bids for a wide range of organisations including national charities (eg Wellcome Trust, Diabetes UK, Cancer UK ); Research Councils (ESRC, MRC) and the National Institute for Health Research – Health Services Research, Service Delivery and Organisation and Research for Patient Benefit ProgrammesAssessor for external Professorial and Readership appointments
  • Reviewer for international journals including:
  1. Social Science and Medicine
  2. British Medical Journal
  3. Journal of Advanced Nursing
  4. Ethnicity and Health
  5. Qualitative Health Research
  6. Journal of Research in Nursing
  7. Human Fertility
  8. Human Reproduction
  9. Reproductive Health Matters
  10. Journal of Medical Humanities
  11. Journal of Reproductive and Infant Psychology
  12. Diversity in Health and Care.
Lorraine Culley

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