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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: https://www.dmu.ac.uk/hls

 

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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.

Research group affiliations

Publications and outputs

  • The representation of medical risks and incentives concerning egg donation: an analysis of the websites of fertility clinics of Belgium, Spain and the UK
    dc.title: The representation of medical risks and incentives concerning egg donation: an analysis of the websites of fertility clinics of Belgium, Spain and the UK dc.contributor.author: Jacxens, Lara; Coveney, Catherine; Culley, Lorraine; LaFuente, Sara; Pennings, Guido; Hudson, Nicky; Provoost, Veerle dc.description.abstract: Considering the growing demand for egg donation (ED) and the scarcity of women coming forward as donors to meet this demand, scholars have expressed concerns that clinics may (initially) misrepresent risks to recruit more donors. Additionally, (non-)monetary incentives might be used to try to influence potential donors, which may pressure these women or cause them to dismiss their concerns. Since the internet is often the first source of information and first impressions influence individuals' choices, we examined the websites of fertility clinics to explore how they present medical risks, incentives and emotional appeals. Content Analysis and Frame Analysis were used to analyze a sample of Belgian, Spanish and UK clinic websites. The data show that the websites mainly focus on extreme and dangerous risks and side effects (e.g. severe OHSS) even though it is highly relevant for donors to be informed about less severe but more frequently occurring risks and side effects (e.g. bloating), since those influence donors' daily functioning. The altruistic narrative of ED in Europe was dominant in the data, although some (hidden) financial incentives were found on Spanish and UK websites. Nonetheless, all information about financial incentives still were presented subtly or in combination with altruistic incentives. dc.description: open access article
  • Delegitimation, stigma and multiple selves: How (perceived) limited understanding of endometriosis amongst significant others shapes women’s lived experiences
    dc.title: Delegitimation, stigma and multiple selves: How (perceived) limited understanding of endometriosis amongst significant others shapes women’s lived experiences dc.contributor.author: Law, Caroline; Hudson, Nichola Anne; Culley, Lorraine; Denny, E.
  • The emergence and use of expanded carrier screening in gamete donation: a new form of repro-genetic selection
    dc.title: The emergence and use of expanded carrier screening in gamete donation: a new form of repro-genetic selection dc.contributor.author: Hudson, Nicky; Herbrand, C.; Culley, Lorraine dc.description.abstract: With the continued expansion and commercialisation of fertility treatments, the selection and matching of donors has become more sophisticated and technologised. As part of this landscape, new form of genetic screening: ‘expanded carrier screening’ (ECS) is being offered as a technique to avoid the risk of donors passing on genetic conditions to future offspring. Allowing donors to be tested for hundreds of genetic conditions simultaneously, ECS marks a considerable departure from traditional ‘family history’ models of screening, which rely on individual’s knowledge of family health. There is growing evidence of a drive towards the use of ECS within the fertility sector and a growing number of clinics are offering it for a fee, as part of an egg or sperm donation cycle or as an add-on to IVF treatment. In this paper we use methods of critical reflection to synthesise data from two studies to explore how ECS is being used to avoid genetic risk in IVF treatment using donor gametes. We suggest that ECS is a new form of repro-genetic selection – a selective reproductive technology - with specific and important implications for donors, recipients and clinicians, and with the potential to reconfigure the scope and application of gamete donation. We examine these implications and conclude that the existing policy blind spot relating to this development in fertility treatment practice needs to be urgently addressed.
  • 'You feel like you’re drifting apart’: a qualitative study of impacts of endometriosis on sex and intimacy amongst heterosexual couples
    dc.title: 'You feel like you’re drifting apart’: a qualitative study of impacts of endometriosis on sex and intimacy amongst heterosexual couples dc.contributor.author: Law, Caroline; Hudson, Nicky; Culley, Lorraine; Mitchell, Helene; Norton, Wendy dc.description.abstract: While a wide body of research reports the considerable impact endometriosis can have on sex for women with the condition, studies commonly use a quantitative design and often focus on dyspareunia. There has been a limited amount of qualitative research which includes partners and explores the broader impact on not only sex, but also intimacy and the couple relationship. This paper utilizes findings from the UK-based ENDOPART study which examined the impact of endometriosis on heterosexual couples, via in-depth interviews (n=44). The paper reports the complex ways in which endometriosis symptoms, including but not only dyspareunia, can impact upon sex, intimacy and the couple relationship, as well as partners’ emotional responses and the strategies they employed. It discusses specific and gendered ways in which heterosexual women and couples experience, navigate and manage these impacts in relation to conventions of menstrual etiquette, discourses of male sex drive and practices of emotion work. In demonstrating the range of impacts on women, partners and the couple relationship, and the importance of taking a couple-focused, relational and gendered approach, the paper will be of benefit to practitioners in healthcare and sex- and relationship-focused therapy working with women and couples living with endometriosis. dc.description: open access article
  • The experience of counselling for UK egg providers
    dc.title: The experience of counselling for UK egg providers dc.contributor.author: Loyal, Sasha; Hudson, Nicky; Culley, lorraine; Weis, Christina dc.description.abstract: Objective The aim of this study was to address current gaps in knowledge regarding the appropriateness and quality of counselling provided to egg donors in the UK. Methods The present study used a cross-sectional, qualitative design. Semi-structured interviews were carried out with 29 UK egg donors to explore their experiences of egg donation and the counselling received. Results Of the 29 participants, 24 had received counselling. The remaining five did not receive counselling because they were either not accepted as a donor (n = 4) or were offered, but chose not to take up the session (n = 1). The findings are presented in relation to five themes: feeling supported via counselling; feeling well-informed; welcoming an individualised approach; the counselling setting; and thinking about the future. Conclusion Egg donors in this study had varying experiences of counselling offered to them as part of the egg donation process in the UK. Implications The findings indicate that there are some aspects of counselling in the UK that could be improved, including the routine offering of counselling throughout the egg donation process and the tailoring of counselling to meet egg donors' individual needs. dc.description: open access article
  • A structured collaborative approach to intervention design using a modified intervention mapping approach: A case study using the Management and Interventions for Asthma (MIA) project for South Asian children
    dc.title: A structured collaborative approach to intervention design using a modified intervention mapping approach: A case study using the Management and Interventions for Asthma (MIA) project for South Asian children dc.contributor.author: Lakhanpaul, M.; Culley, Lorraine; Robertson, N.; Alexander, E.; Bird, D.; Hudson, Nicky; Johal, N.; McFeeters, M.; Hamlyn-Williams, C.; Manikam, L.; Boo, Y.; Lakhanpaul, M.; Johnson, M. dc.description.abstract: Background: To describe how using a combined approach of community-based participatory research and intervention mapping principles could inform the development of a tailored complex intervention to improve management of asthma for South Asian (SA) children; Management and Interventions for Asthma (MIA) study. Methods: Qualitative study using interviews, focus groups, workshops, and modified intervention mapping procedures to develop an intervention planning framework in an urban community setting in Leicester, UK. The modified form of intervention mapping (IM) included: systematic evidence synthesis; community study; families and healthcare professionals study; and development of potential collaborative intervention strategies. Participants in the community study were 63 SA community members and 12 key informants; in-depth semi-structured interviews involved 30 SA families, 14 White British (WB) families and 37 Healthcare Professionals (HCPs) treating SA children living with asthma; prioritisation workshops involved 145 SA, 6 WB and 37 HCP participants; 30 participants in finalisation workshops. Results: Two key principles were utilised throughout the development of the intervention; community-based participatory research (CBPR) principles and intervention mapping (IM) procedures. The CBPR approach allowed close engagement with stakeholders and generated valuable knowledge to inform intervention development. It accounted for diverse perceptions and experiences with regard to asthma and recognised the priorities of patients and their families/caregivers for service improvement. The ‘ACT on Asthma’ programme was devised, comprising four arms of an intervention strategy: education and training, clinical support, advice centre and raising awareness, to be co-ordinated by a central team. Conclusions: The modified IM principles utilised in this study were systematic and informed by theory. The combined IM and participatory approach could be considered when tailoring interventions for other clinical problems within diverse communities. The IM approach to intervention development was however resource intensive. Working in meaningful collaboration with minority communities requires specific resources and a culturally competent methodology. dc.description: The file attached to this record is the author's final peer reviewed version.
  • Men, chronic illness and health work: accounts from male partners of women with endometriosis
    dc.title: Men, chronic illness and health work: accounts from male partners of women with endometriosis dc.contributor.author: Hudson, Nicky; Law, Caroline; Culley, Lorraine; Mitchell, H.; Denny, E.; Norton, Wendy; Raine-Fenning, N. dc.description.abstract: 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. dc.description: open access article
  • Reframing egg donation in Europe: new regulatory challenges for a shifting landscape
    dc.title: Reframing egg donation in Europe: new regulatory challenges for a shifting landscape dc.contributor.author: Hudson, Nicky; Culley, Lorraine; Herbrand, C.; Pavone, Vincenzo; Pennings, Guido; Provoost, Veerle; Coveney, Catherine; LaFuente, Sara dc.description.abstract: 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. dc.description: 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
    dc.title: Factors influencing utilisation of ‘free-standing’ and ‘alongside’ midwifery units for low-risk births in England: a mixed-methods study dc.contributor.author: Walsh, Denis; Spiby, Helen; McCourt, Christine; Coleby, Dawn; Grigg, Celia; Bishop, Simon; Scanlon, Miranda; Culley, Lorraine; Wilkinson, jane; Pacanowski, Lynne; Thornton, Jim dc.description.abstract: 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
    dc.title: Factors influencing the utilisation of free-standing and alongside midwifery units in England: A Qualitative Research Study dc.contributor.author: Walsh, Denis; Spiby, Helen; McCourt, Christine; Grigg, Celia; Coleby, Dawn; Bishop, Simon; Scanion, Miranda; Culley, Lorraine; Wilkinson, Jane; Pacanowski, Lynne; Thornton, Jim dc.description.abstract: 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. dc.description: 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

 

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 donation: Egg 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