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: 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 

  • 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.
  • Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis
    Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis Hudson, Nicky; Law, Caroline; Culley, Lorraine; Mitchell, H.; Denny, E.; Raine-Fenning, N. Despite a growing literature on the value of relational data in studies of social phenomena, individuals still commonly constitute the basic unit of analysis in qualitative research. Methodological aspects of interviewing couples, particularly interviewing partners separately, and of conducting dyadic analysis have received scant attention. This article describes the experience of conducting separate interviews with both partners in 22 heterosexual couples (n = 44) in a study of the impact of the gynaecological condition endometriosis. In order to advance current methodological thinking regarding interviewing couples, we describe the dyadic, relational approach employed in designing the study and our specific method of dyadic analysis. We argue that utilising separate interviews with dyadic analysis rather than conducting joint interviews, while not without its ethical, practical and analytical challenges, offers considerable methodological benefits. Such an approach allows a unique relational insight into the impact of chronic illness on couples and how they navigate chronic illness by illuminating both shared and individual interpretations, experiences, understandings and meanings open access article
  • Running out of time: Exploring women’s motivations for social egg freezing
    Running out of time: Exploring women’s motivations for social egg freezing Baldwin, K.; Hudson, Nicky; Culley, Lorraine; Mitchell, H. Objective: Few qualitative studies have explored women’s use of social egg freezing. Derived from an interview study of 31 participants, this paper explores the motivations of women using this technology. Methods: Semi-structured interviews were conducted with 31 users of social egg freezing resident in the UK (n= 23), USA (n=7) and Norway (n=1). Interviews were face to face (n=16), through Skype and Facetime (n=9) or by telephone (n=6). Data were analysed using interpretive thematic analysis. Results: Women’s use of egg freezing was shaped by fears of running out of time to form a conventional family, difficulties in finding a partner and concerns about ‘panic partnering’, together with a desire to avoid future regrets and blame. For some women, use of egg freezing was influenced by recent fertility or health diagnoses as well as critical life events. A fifth of the participants also disclosed an underlying fertility or health issue as affecting their decision. Conclusion: The study provides new insights in to the complex motivations women have for banking eggs. It identifies how women’s use of egg freezing was an attempt to ‘preserve fertility’ in the absence of the particular set of ‘life conditions’ they regarded as crucial for pursuing parenthood. It also demonstrates that few women were motivated by a desire to enhance their career and that the boundaries between egg freezing for medical and for social reasons may be more porous than first anticipated. 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.
  • A qualitative study to identify parents’ perceptions of and barriers to asthma management in children from South Asian and White British families
    A qualitative study to identify parents’ perceptions of and barriers to asthma management in children from South Asian and White British families Lakhanpaul, M.; Culley, Lorraine; Robertson, N.; Bird, D.; Hudson, Nicky; Johal, Narynder; McFeeters, Melanie; Angell, Emma; Hamlyn-Williams, Charlotte; Abbas, Nadine; Manikam, L.; Johnson, Mark, 1948 Mar. 16- Background Over one million children receive treatment for asthma in the UK. South Asian children experience excess morbidity and higher rates of hospitalization than the White population. This study aimed to explore perceptions and experiences of asthma and asthma management in British South Asian and White British families, to identify barriers to optimal management and to inform culturally appropriate interventions to improve management. Methods A qualitative methodology, using semi-structured interviews was adopted. Members of 30 families from six major South Asian ethnic-religious groups were purposively sampled (n = 49). For comparison, 17 White British parents were interviewed. Topics included understandings of asthma; day-to-day management; interactions with health care providers and the perceived quality of healthcare services. Data were analyzed using interpretive thematic analysis, facilitated by NVivo. Similarities and differences between South Asian and White families were analysed across key themes. Results Many of the problems facing families of a child with asthma were common to South Asian and White British families. Both had limited understanding of asthma causes and triggers and expressed confusion about the use of medications. Both groups reported delays in receiving a clear diagnosis and many experienced what was perceived as uncoordinated care and inconsistent advice from health professionals. No family had received an asthma plan. South Asian families had more difficulty in recognising severity of symptoms and those with limited English faced additional barriers to receiving adequate information and advice about management due to poor communication support systems. South Asian parents reported higher levels of involvement of wider family and higher levels of stigma. Attendance at the emergency department was related to previous experience, difficulties in accessing primary care, lack of knowledge of alternatives and difficulties in assessing severity. Conclusions Barriers to optimal asthma management exist at the individual family, community and healthcare systems levels. Culturally sensitive, holistic and collaboratively designed interventions are needed. Improved communication support for families with lower proficiency in English is required. Healthcare professionals need to ensure that families receive an asthma plan and make greater efforts to check families’ understandings of asthma triggers, use of medications, assessment of asthma severity and accessing help. open access article
  • A qualitative study of the impact of endometriosis on male partners
    A qualitative study of the impact of endometriosis on male partners Culley, Lorraine; Law, Caroline; Hudson, Nicky; Mitchell, H.; Raine-Fenning, N.; Denny, E. STUDY QUESTION What is the impact of endometriosis on male partners of women with the condition? SUMMARY ANSWER Endometriosis significantly impacts men across several life domains and can negatively impact emotional well-being. WHAT IS KNOWN ALREADY Endometriosis has been shown to negatively impact women's quality of life and may strain intimate relationships. Little is known about the impact on male partners. STUDY DESIGN, SIZE, DURATION The ENDOPART study was a cross-sectional, qualitative study of 22 women with endometriosis and their male partners (n = 44) in the UK (2012–2013). PARTICIPANTS/MATERIALS, SETTING, METHODS Inclusion criteria: laparoscopic diagnosis of endometriosis; the presence of symptoms for at least a year; partners living together. Data were collected via face to face, semi structured interviews with partners interviewed separately. Data were analysed thematically, assisted by NVivo 10. MAIN RESULTS AND THE ROLE OF CHANCE Men reported that endometriosis affected many life domains including sex and intimacy, planning for and having children, working lives and household income. It also required them to take on additional support tasks and roles. Endometriosis also had an impact on men's emotions, with responses including helplessness, frustration, worry and anger. The absence of professional or wider societal recognition of the impact on male partners, and a lack of support available to men, results in male partners having a marginalized status in endometriosis care. LIMITATIONS REASONS FOR CAUTION Self-selection of participants may have resulted in a sample representing those with more severe symptoms. Couples included are in effect ‘survivors’ in relationship terms, therefore, findings may underestimate the contribution of endometriosis to relationship breakdown. WIDER IMPLICATIONS OF THE FINDINGS The study extends knowledge about the impact of endometriosis on relationships, which thus far has been drawn largely from studies with women, by providing new insights about how this condition affects male partners. Healthcare practitioners need to take a more couple-centred, biopsychosocial approach toward the treatment of endometriosis, inclusive of partners and relationship issues. The findings demonstrate a need for information and support resources aimed at partners and couples. STUDY FUNDING/COMPETING INTEREST(S) This study was funded by the Economic and Social Research Council (reference ES/J003662/1). The authors have no conflicts of interest. Open Access article
  • Gay men's journeys to parenthood via surrogacy: an exploratory study of UK residents
    Gay men's journeys to parenthood via surrogacy: an exploratory study of UK residents Norton, Wendy; Hudson, Nicky; Fish, Julie; Culley, Lorraine Oral presentation (O-284) at the European Society of Human Reproduction and Embryology, 32nd Annual Meeting, Helsinki, Finland, 3-6th July 2016
  • Asthma Management in British South Asian Children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care.
    Asthma Management in British South Asian Children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care. Hudson, Nicky; Culley, Lorraine; Johnson, Mark, 1948 Mar. 16-; McFeeters, Melanie; Robertson, N.; Angell, Emma; Lakhanpaul, M. Background In the UK, people of South Asian origin with asthma experience excess morbidity, with hospitalisation rates three times those of the majority White population and evidence suggests that South Asian children with asthma are more likely to suffer uncontrolled symptoms and hospital admissions with acute asthma compared to White British children. This paper draws on data from The Management and Interventions for Asthma (MIA) study to identify the operation of barriers to optimal care and good asthma control for South Asian children. Methods The MIA study followed a multi-phase, iterative, participatory design, underpinned by the socio-ecological model. Findings presented here are from face-to face, semi-structured interviews with South Asian (Indian, Pakistani and Bangladeshi origin) parents and carers of a child with asthma (n=49). Interviews were conducted in English or relevant South Asian languages using specially trained community facilitators. Data were transcribed verbatim and analysed according to the principles of interpretive thematic analysis, facilitated by the use of NVivo. Results Seven dimensions of candidacy are identified: identification of candidacy; navigation; the permeability of asthma services; appearances at health services; adjudications; offers and resistance and operating conditions in the local production of candidacy. The analysis demonstrates several ways in which a potential lack of alignment between the priorities and competencies of British South Asian families and the organization of health services combine to create vulnerabilities and difficulties in effectively managing childhood asthma. Conclusions Healthcare systems have a responsibility to develop services that are sensitive and appropriate to the needs of their communities. In South Asian communities, further efforts are required to raise awareness of symptoms and effectively communicate how, when and where to seek help for children. There is a need for improved diagnosis and consistent, effectively communicated information, especially regarding medication. Parents made several suggestions for improving services: presentations about asthma at easily accessible community venues; an advice centre or telephone helpline to answer queries; opportunities for sharing experiences with other families; having information provided in South Asian languages; longer GP appointments; extended use of asthma nurses; and better education for healthcare professionals to ensure consistency of care and advice. Open Access article
  • Cross-border assisted reproduction: a qualitative account of UK travellers' experiences
    Cross-border assisted reproduction: a qualitative account of UK travellers' experiences Hudson, Nicky; Culley, Lorraine; Blyth, E.; Norton, Wendy; Pacey, A.; Rapport, F. Surveys on patients’ experiences of cross-border fertility treatment have reported a range of positive and challenging features. However, the number of such studies is limited and there is no detailed qualitative account of the experiences of UK patients who travel overseas for fertility treatment. The present study used a cross-sectional, qualitative design and in-depth interviews. Fifty-one participants (41 women and 10 men, representing 41 treatment ‘cases’) participated in semi-structured interviews. The experiences reported were broadly positive with a large proportion of participants (39 cases, 95%) citing a favourable overall experience with only 2 cases (5%) reporting a more negative experience. Thematic analysis revealed six major categories and 20 sub-categories, which described the positive and challenging aspects of cross border fertility travel. The positive aspects were represented by the categories: ‘access’, ‘control’, ‘care and respect’. The more challenging aspects were categorised as ‘logistics and coordination of care’, ‘uncertainty’ and ‘cultural dissonance’. The study confirms findings from others that despite some challenges, there is a relatively high level of patient satisfaction with cross-border treatment with participants able to extend the boundaries of their fertility-seeking trajectories and in some cases, regain a sense of control over their treatment. 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.
  • ‘We needed to change the mission statement of the marriage’: biographical disruptions, appraisals and revisions among couples living with endometriosis
    ‘We needed to change the mission statement of the marriage’: biographical disruptions, appraisals and revisions among couples living with endometriosis Hudson, Nicky; Culley, Lorraine; Law, Caroline; Mitchell, H.; Denny, E.; Raine-Fenning, N. The concept of biographical disruption has been widely applied in sociological explorations of chronic illness and has been subject to much theoretical scrutiny, reflection and development. However, little attention has been given to the impact of biographical disruption beyond the individual level. This article explores the concept from a dyadic perspective, utilising data from an exploratory, qualitative study (ENDOPART) that investigated the impact of endometriosis on women and their male partners. In total, 22 couples participated in in-depth, semi-structured, face-to-face interviews. The women and their partners were interviewed separately and, in most cases, simultaneously, by different interviewers. Data analysis was informed by an interpretivist relational approach, foregrounding the meanings participants applied to their experiences, treating interviews as accounts, and exploring partners’ accounts in relation to one another. Two analytic approaches generated several themes for exploration in the context of the concept of biographical disruption: sex and intimacy; planning for and having children; working lives and social lives. The article argues that biographical disruptions are social and inter-relational processes and discusses how couples living with endometriosis negotiated these disruptions, how they were appraised and how lives and expectations were revised as a result. 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.

 

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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