Browsing by Author "Raine-Fenning, N."
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Item Open Access Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis(Sage, 2018-07-06) 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 meaningsItem Metadata only Disrupted reproduction: the impact of endometriosis on couples’ plans for childbearing(2013-10) Culley, Lorraine; Hudson, Nicky; Law, Caroline; Denney, E.; Mitchell, H.; Raine-Fenning, N.Objective Little is known about how couples experience living with the common, chronic condition endometriosis and in particular how the uncertain relationship between endometriosis and fertility impacts on plans for parenthood. The UK Endopart study uniquely investigated the impact of endometriosis on women and their male partners. This paper presents findings on fertility decision making and experiences of trying to conceive. Design The Endopart study was a UK based cross-sectional qualitative study (2012-13). Materials and methods In-depth, face-to-face, audio-recorded interviews with 22 heterosexual couples living with endometriosis were conducted. Women and their male partners were interviewed separately (n=44). Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Data were transcribed verbatim and analysed thematically using NVivo computer software, informed by gender-relational theory. Results Eighteen of 22 couples described endometriosis as affecting their plans to have children. Half (n=9) had sought and/or received medical treatment or investigations for infertility. The remaining nine couples, though not considered infertile, also described a range of impacts on childbearing including: impacts on decisions about reproductive timing, spacing and numbers of children; use of assisted conception technologies; and loss and disruption associated with unwanted childlessness. ‘Anticipated infertility’ as well as actual involuntary childlessness was a significant source of distress and relationship tension. Conclusions Disruption to childbearing caused by endometriosis impacts on couple relationships in complex ways, not hitherto well acknowledged or understood. Anxiety, uncertainty and anticipated loss are experienced by men and women and should be considered by professionals in the clinical encounter. Support: Funded by the UK Economic and Social Research Council (grant ref: ES/J003662/1).Item Open Access Endometriosis: Improving the wellbeing of couples, Summary report and recommendations(De Montfort University, 2013-10-01) Hudson, Nicky; Culley, Lorraine; Mitchell, H.; Law, Caroline; Denny, E.; Raine-Fenning, N.Item Metadata only Gender differences in the emotional impact of living with endometriosis(2013-10) Denny, E.; Culley, Lorraine; Hudson, Nicky; Mitchell, H.; Law, Caroline; Raine-Fenning, N.; Baumgarten, M.Problem statement While there is evidence of a negative socio-psychological impact on women, little is known about how couples experience living with the common, chronic condition endometriosis. In particular there is a dearth of evidence on the experience of male partners of women with this debilitating condition. The aims of the UK based Endopart study, funded by the UK Economic and Social Research Council, are to explore the impact of endometriosis on heterosexual couples and to provide an evidence base for improving couple support (www.endopart.co.uk). Methods Qualitative, in-depth, face-to-face interviews with 22 heterosexual couples were conducted. Women and their male partners were interviewed separately (n=44). Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples were living together at the time of interview. Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Interviews were transcribed verbatim and data were analysed thematically, using NVivo (qualitative data software) and informed by an interpretivist and gender-relational approach. Results Men’s reports suggested that many took a stoical approach to endometriosis, and were reluctant to acknowledge or discuss any emotional impact of the disease with their partner. However, during the interviews men did describe feelings of worry, and of helplessness at not being able to alleviate symptoms. Some men also reported anger and frustration at the healthcare system and the absence of a ‘cure’ for the pain and suffering of partners. Many saw it as their role to act as advocate for their partner, often taking an assertive stance in consultations. Men also perceived their role as protector, but reported sometimes feeling helpless in carrying this out. Findings from women’s interviews reinforce previous research on their experience. Women described how living with endometriosis and treatment side effects impact on their mood resulting in feelings of depression, tearfulness and/or irritability. They were more open about emotions and reported feelings of guilt and loss relating to their perceived gender roles, such as diminished sexual relationships. A few spoke of not feeling feminine or an adequate wife and several had suggested that their partners should leave them in case they could not have children. They described their partner as ‘good’ when they ‘helped out’ or took over household tasks, as these were seen by both men and women as being predominantly female responsibilities. Conclusion Gender roles appear to shape the way in which women with endometriosis and their partners react to living with endometriosis. In line with dominant masculine norms, men tend to take a more controlling and assertive role than women, viewing endometriosis as a problem to be sorted, feeling helpless when they cannot find a solution. Drawing on dominant feminine norms, many women report feeling guilty at their perceived inadequacies, for example avoiding sexual intimacy or an inability to undertake routine household tasks. At present discussions of management are focused on the woman, largely ignoring the impact on male partners and on couples. The findings here suggest responses to living with endometriosis are different for women and men and this knowledge can inform the provision of more couple centred services.Item Metadata only 'I don’t know what sex is like without pain’: the impact of endometriosis on sexual relationships in couples(2013-03) Law, Caroline; Culley, Lorraine; Hudson, Nicky; Denney, E.; Baumgarten, M.; Raine-Fenning, N.; Mitchell, H.Background Endometriosis is a common, chronic, disabling condition of unknown aetiology which affects an estimated 5-15% of women worldwide. Common symptoms include dysmenorrhoea, heavy menstrual bleeding, pelvic pain, fatigue and dyspareunia and it is associated with infertility. While there is evidence of a negative socio-psychological impact on women, there is little research internationally which explores the experience of male partners or the impact on couples. Aims The aims of the UK based Endopart study* (funded by the UK Economic and Social Research Council) are to explore the impact of endometriosis on couples and to provide an evidence base for improving couple support. Method Contextual interviews with key informants (n=11) were followed by a qualitative interview study of 20 heterosexual couples within a critical realist framework. Separate, in-depth, face to face interviews (n=40) were carried with men and women [March to November 2012]. Data were analysed thematically and dyadically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support groups enabled a critical dialogue on emergent findings and development of recommendations. Results Endometriosis can have a major and often devastating impact on all aspects of life for both women and their male partners. In this paper we highlight the impact of endometriosis on the sexual relations of couples and the difficulties some couples experience communicating with each other and with healthcare providers in this highly sensitive area. Discussion and conclusion Hegemonic ideas of femininity, masculinity and gender relationships shape couples’ experience of endometriosis. Healthcare providers need to understand the impact of endometriosis and its treatment on quality of life, especially on sexual relationships. The paper uniquely advances knowledge of couples’ experiences of living with endometriosis and argues for nurses to consider the implications of this enigmatic condition for nursing practice. * see www.endopart.co.ukItem Metadata only Improving the wellbeing of couples living with endometriosis(2013-07) Hudson, Nicky; Culley, Lorraine; Law, Caroline; Denney, E.; Mitchell, H.; Baumgarten, M.; Raine-Fenning, N.Study question How do heterosexual couples experience living with endometriosis? Summary answer Our data demonstrate that endometriosis and its management significantly disrupts the lives of both women and men in many domains and that healthcare providers and support groups need to give further attention to the specific needs of men and of couples in the management of this common, chronic condition. What is known already Endometriosis is a chronic gynaecological condition affecting women of reproductive age with an estimated incidence of 5-15%. Symptoms include severe dysmenorrhoea, chronic pelvic pain, fatigue, heavy menstrual bleeding and dyspareunia. It is associated with 40% of attendances at infertility clinics. Studies report strain on social and marital relationships, as well as identifying partners as an important source of support. Such studies only capture women’s experiences, however, and male partners remain largely absent from the literature. Study design, size, duration The UK-based ‘Endopart’ study is a qualitative, cross-sectional interview study. Inclusion criteria for couples were a laparoscopic diagnosis of endometriosis and that couples were living together at the time of interview. Interview data were collected between April 2012 and December 2012. Participants/materials, setting, methods In-depth, face-to-face interviews with 22 heterosexual UK couples were conducted. Women and their partners were interviewed separately (n=44). Interviews were fully transcribed and entered into NVivo for analysis. Data were analysed using a systematic, thematic method, informed by an interpretivist relational approach. Findings were discussed with clinicians and recommendations produced. Main results and the role of chance In heterosexual couples, the impact of endometriosis is not confined to women, but has significant implications for the male partner and for the couple’s relationship. The practical and emotional impact on men was found to be substantial. Couples experienced considerable disruption, loss and anxiety in the following seven domains: managing daily life; sex and intimacy; planning for and having children; mood and tensions; communicating and supporting each other; accessing and negotiating health care; and utilising information and external support. Principles of systematic sampling were employed to ensure sample diversity regarding age, ethnicity, illness trajectory, and recruitment route. Interim outcomes from the study were discussed at an expert stakeholder workshop in order to enhance interpretive validity. Limitations, reason for caution The cross sectional design makes it difficult to capture the dynamic nature of the impact of endometriosis across the life course. The sample contained a significant proportion of well educated individuals. It would be helpful to confirm findings from the rich and detailed interview data with a larger quantitative study. Wider implications of the findings An estimated 176 million women are affected by endometriosis worldwide. There is no known cure, and treatment has variable impact on symptoms. Finding effective ways to manage the condition is crucial. Discussions of management are focused on the woman, largely ignoring the impact on couples. These findings have implications for the development of couple-centred management and counselling, adding unique data to the knowledge base of clinicians and others providing support to people living with endometriosis.Item Metadata only ‘I’ve gone into a consultancy to really lay the law down, you know, get it sorted’: men’s perceptions of their role in treatment-seeking for endometriosis(2013-05) Hudson, Nicky; Culley, Lorraine; Law, Caroline; Denny, E.; Mitchell, H.; Baumgarten, M.; Raine-Fenning, N.Introduction Endometriosis is a common, chronic, disabling condition of unknown aetiology which affects an estimated 5-15% of women worldwide. Common symptoms include dysmenorrhoea, heavy menstrual bleeding, pelvic pain, fatigue and dyspareunia and it is associated with infertility. While there is evidence of a negative socio-psychological impact on women, there is little research internationally which explores the experience of male partners or the impact on couples. The aims of the UK based Endopart study* (funded by the UK Economic and Social Research Council) are to explore the impact of endometriosis on couples and to provide an evidence base for improving couple support. Material & methods Qualitative in-depth interviews with 22 heterosexual couples were carried out, with men and women interviewed separately (n=44 interviews). Data were analysed thematically and dyadically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support groups enabled a critical dialogue on emergent findings and development of recommendations. Results Endometriosis can have a major and often devastating impact on all aspects of life for both women and their male partners. Involvement in treatment-seeking and associated decision-making was one way in which men provided support to their female partners. In this paper we explore the role that male partners took in: interactions with healthcare providers; decisions about treatment; and supporting their partners through treatment regimes. Conclusions This study uniquely advances knowledge of the couple experience of living with endometriosis and argues for health care professionals to consider the implications of this enigmatic condition for the support they provide to women and their male partners. It highlights the central role of male partners in women’s decision-making and subsequent management of endometriosis. * see www.endopart.co.ukItem Metadata only Men living with endometriosis: perceptions and experiences of male partners of women with the condition(2015-06-14) Hudson, Nicky; Culley, Lorraine; Law, Caroline; Denny, E.; Raine-Fenning, N.Abstract details Submitter: Dr. Nicky Hudson De Montfort University Hawthorn Building, The Gateway Leicester Leicester LE1 9BH United Kingdom Authors: N. Hudson1, L. Culley1, H. Mitchell1, C. Law1, E. Denny2, N. Raine-Fenning3. 1De Montfort University, Applied Social Sciences, Leicester, United Kingdom. 2Birmingham City University, Centre for Health and Social Care Research, Birmingham, United Kingdom. 3University of Nottingham, Faculty of Medicine & Health Sciences, Nottingham, United Kingdom. Title: Men living with endometriosis: perceptions and experiences of male partners of women with the condition Abstract Text: Study question How do male partners of women with endometriosis understand the condition and what role do they play in supporting women in managing their symptoms and access medical treatment? Summary answer Endometriosis and its management significantly disrupts the lives of both women and men in many domains. Men experienced a disruption to their own quality of life and a corresponding impact on the couple relationship. Male partners played an important role in women’s decision-making around and subsequent management of endometriosis. What is known already Endometriosis is a chronic gynaecological condition affecting women of reproductive age with an estimated incidence of 5-15%. Symptoms include dysmenorrhoea, chronic pelvic pain, fatigue, heavy menstrual bleeding and dyspareunia. It is associated with 40% of attendances at infertility clinics. Studies report strain on social and marital relationships, as well as identifying partners as an important source of support. Such studies only capture women’s experiences with scant evidence about the specific impact on the male partner. Study design, size, duration The UK-based ‘Endopart’ study is a qualitative, cross-sectional interview study. Inclusion criteria for couples were a laparoscopic diagnosis of endometriosis and that couples were living together at the time of interview. Interview data were collected between April 2012 and December 2012. Participants/materials, setting, methods In-depth, face-to-face interviews with 22 heterosexual UK couples were conducted. Women and their partners were interviewed separately (n=44). This paper draws on the interviews with the male partners. Data were analysed in Nvivo using a systematic, thematic method, informed by an interpretivist relational approach. Main results and the role of chance The practical and emotional impact on men of living with endometriosis was found to be substantial. Whilst all chronic conditions will affect the "well" partner to some extent, endometriosis can be particularly problematic for couples because of its potential impact on fertility and sexual relationships. Involvement in treatment-seeking and associated decision-making was one way in which men provided support to their female partners. In particular, our data demonstrate men’s involvement in interactions with healthcare providers; decisions about treatment; and supporting their partners through treatment regimes. Principles of systematic sampling were employed to ensure sample diversity regarding age, ethnicity, illness trajectory, and recruitment route. Interim outcomes from the study were discussed at an expert stakeholder workshop in order to enhance interpretive validity. Limitations, reason for caution The cross sectional design makes it difficult to capture the dynamic nature of the impact of endometriosis across the life course. The sample contained a significant proportion of well educated individuals. It would be helpful to confirm findings from the rich and detailed interview data with a larger quantitative study. Wider implications of the findings An estimated 176 million women are affected by endometriosis worldwide. There is no known cure, and treatment has variable impact on symptoms. Finding effective ways to manage the condition is crucial. Discussions of management are focused on the woman, largely ignoring the impact on men/couples. These findings have implications for the development of couple-centred management and counselling, adding unique data to the knowledge base of clinicians and others providing support to people living with endometriosis. Study funding/competing interest(s) Funding by national/international organization(s) The study was funded by the UK Economic and Social Research Council, grant reference: ES/J003662/1. The authors have no competing interests to report. Trial registration number N/AItem Metadata only Men's Perceptions of Improving Couple Support in Endometriosis: The Role of Qualitative Research(University of Alberta, 2013) Culley, Lorraine; Hudson, Nicky; Denney, E.; Baumgarten, M.; Raine-Fenning, N.; Mitchell, H.Item Metadata only Men, chronic illness and health work: accounts from male partners of women with endometriosis(Wiley, 2020-06-26) 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.Item Metadata only Men, gender and endometriosis: accounts of chronic illness from the ‘well’ partner(2012-09) Hudson, Nicky; Culley, Lorraine; Denny, E.; Mitchell, H.; Raine-Fenning, N.; Law, CarolineEndometriosis is a relatively common gynaecological condition affecting up to 2 million women in the UK alone. Common symptoms are chronic pelvic pain, fatigue, heavy painful periods, and a deep pain experienced during sexual intercourse. It is also associated with 40% of attendances at infertility clinics and a poorer outcome in women undergoing IVF. There is no consensus on what causes endometriosis or the most appropriate medical treatment and there is no definitive cure. Research with women living with endometriosis has highlighted the chronic and disabling nature of the condition and its impact across a wide range of life domains. However, very little is known about how male partners of women living with endometriosis experience this condition or about the dyadic components of gendered chronic illnesses more generally. Whilst all chronic conditions will affect the "well" partner to some extent, endometriosis can be particularly problematic for couples because of its potential impact on fertility and sexual relationships and because of its enigmatic nature. This paper is based on an ESRC funded dyadic study of heterosexual couples living with endometriosis (www.endopart.co.uk). From an analysis of interviews with male partners of women diagnosed with endometriosis, it explores how men make sense of a gendered chronic condition, the impact on men’s lives and the kinds of health work that men enact in daily living with a partner with endometriosis.Item Metadata only Men’s perceptions of improving couple support in endometriosis: the role of qualitative research(2012-10) Culley, Lorraine; Hudson, Nicky; Denny, E.; Law, Caroline; Baumgarten, M.; Raine-Fenning, N.; Mitchell, H.Item Metadata only Pain management decisions amongst couples living with endometriosis(2013-11-28) Mitchell, H.; Culley, Lorraine; Hudson, Nicky; Law, Caroline; Denny, E.; Baumgarten, M.; Raine-Fenning, N.http://www.eel-congress.de/ Title: Pain management decisions amongst couples living with endometriosis Authors: Culley, L, Hudson, N, Law, C, Denny, E, Mitchell, H, Baumgarten, M and Raine-Fenning, N. Question: While there is evidence of a negative socio-psychological impact of endometriosis on women, little is known about how couples experience living with the condition, and about the impact on male partners. The aims of the UK-based Endopart study* (funded by the UK Economic and Social Research Council) are to explore the impact of endometriosis on heterosexual couples and to contribute to enhancing the wellbeing of people living with endometriosis by providing an evidence base for improving couple support. This paper focuses uniquely on couples’ decision making regarding endometriosis pain management. Methods: Contextual interviews with key informants (n=11) were followed by qualitative interviews with 22 heterosexual couples, which were analysed within a critical realist framework. Separate, in-depth, face-to-face interviews (n=44) were conducted with women and men. Inclusion criteria were a laparoscopic diagnosis and that couples were living together at the time of interview. Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Data were analysed thematically, informed by an interpretivist and gender-relational approach. A participatory stakeholder workshop with couples, healthcare providers and support group representatives enabled a critical dialogue on emergent findings and the development of recommendations for couple support. Results: Pain associated with endometriosis can have a major and devastating impact on all aspects of women’s lives and those of their partners. Two key dilemmas relating to pain management emerged. First, medical and surgical treatments that alleviate pain often prohibit conception or pose risks to fertility. Findings demonstrate the difficult choice couples have to make between taking hormonal treatment or undergoing surgery in order to reduce pain symptoms, or rejecting treatment in order to pursue parenthood, while simultaneously assessing risks that their treatment may be ineffective or that conception may not occur. The decision making process is further complicated when partners have differing priorities. Second, dyspareunia requires women to make a difficult choice between abstaining from sexual intercourse, with resultant feelings of guilt, loss and concerns about risks to relationships, or enduring painful sex to experience desired intimacy and closeness. Pain is sometimes actively selected as other factors take priority. When male partners are aware of their partner’s dyspareunia they become reluctant to instigate sex and experience associated feelings of guilt if they then engage in sex or frustration, loss and disappointment if forego sex. Conclusion: The Endopart study provides unique data on couples’ experiences and male perspectives. Desires for motherhood and intimacy shape women’s choices concerning endometriosis pain management, and are, for some, prioritised over pain reduction. This study highlights that men also have to consider their own desires for fatherhood or intimacy in the context of their partner’s endometriosis. Healthcare providers need to understand the impact of endometriosis pain on couples and the complex factors that influence endometriosis pain management. It is also important to recognise that decision-making takes place within a dyadic context, where both partners’ perspectives and desires are constantly being negotiated. * www.endopart.co.ukItem Metadata only Pain management, intimacy and parenthood amongst couples living with endometriosis(2013-04) Culley, Lorraine; Hudson, Nicky; Law, Caroline; Denny, E.; Mitchell, H.; Baumgarten, M.; Raine-Fenning, N.Background: Endometriosis is an enigmatic, chronic gynaecological condition of unknown aetiology affecting women of reproductive age. Incidence is difficult to assess but has been estimated at between 5 and 15% of the female population. Common symptoms are severe dysmenorrhoea, chronic pelvic pain, fatigue, menorrhagia, and dyspareunia. It is also associated with 40% of attendances at infertility clinics. As there is no cure for endometriosis the management focuses on removal of ectopic endometrial tissue and symptom relief which can involve a range of interventions including analgesics, hormonal therapy and surgical interventions, with varying and unpredictable rates of success. The aims of the UK-based Endopart study (funded by the UK Economic and Social Research Council: ES/J003662/1) are to explore the impact of endometriosis on heterosexual couples and to contribute to enhancing the well-being of people living with endometriosis by providing an evidence base for improving couple support. Methods: Contextual interviews with key informants (n=11) were followed by qualitative interviews with 22 heterosexual couples which were analysed within a critical realist framework. Separate, in-depth, face-to-face interviews (n=44) were conducted with women and men. Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples had been living together for at least one year. Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Data were analysed thematically, informed by an interpretivist and gender relational approach. A participatory stakeholder workshop with couples, healthcare providers and support group representatives enabled a critical dialogue on emergent findings and the development of recommendations for couple support in endometriosis. Results: Endometriosis pain can have a major and devastating impact on all aspects of women’s lives and those of their partners. Two key dilemmas relating to pain management are discussed. First, dyspareunia requires women to make a difficult choice between abstaining from sex, with resultant feelings of guilt and concerns about risks to relationships, and enduring painful sex to experience desired intimacy and closeness. When male partners are aware of dyspareunia, they become reluctant to instigate sex and experience associated feelings of guilt. Second, treatments that alleviate pain often prohibit conception and findings demonstrate the difficult choice couples have to make between pain reduction and achieving parenthood, while simultaneously assessing risks that their treatment may be ineffective or that conception may not occur. The decision making process is further complicated when partners have differing priorities. Conclusion: Desires for motherhood and intimacy shape women’s choices concerning endometriosis pain management, and are, for some, prioritised over pain reduction. This study also uniquely illuminates that men also have to consider their own desires for fatherhood or intimacy in the context of their partner’s endometriosis. Healthcare providers need to understand the impact of endometriosis pain on couples and the complex factors that influence attitudes and actions concerning endometriosis pain management.Item Open Access A qualitative study of the impact of endometriosis on male partners(Oxford University Press, 2017-06-29) 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.Item Open Access The social and psychological impact of endometriosis on women's lives: a critical narrative review(Oxford Journals, 2013-07) Culley, Lorraine; Law, Caroline; Hudson, Nicky; Denny, E.; Mitchell, H.; Baumgarten, M.; Raine-Fenning, N.BACKGROUND Endometriosis is a chronic condition affecting between 2 and 17% of women of reproductive age. Common symptoms are chronic pelvic pain, fatigue, congestive dysmenorrhoea, heavy menstrual bleeding and deep dyspareunia. Studies have demonstrated the considerable negative impact of this condition on women's quality of life (QoL), especially in the domains of pain and psychosocial functioning. The impact of endometriosis is likely to be exacerbated by the absence of an obvious cause and the likelihood of chronic, recurring symptoms. The aims of this paper are to review the current body of knowledge on the social and psychological impact of endometriosis on women's lives; to provide insights into women's experience of endometriosis; to provide a critical commentary on the current state of knowledge and to make recommendations for future psycho-social research. METHODS The review draws on a method of critical narrative synthesis to discuss a heterogeneous range of both quantitative and qualitative studies from several disciplines. This included a systematic search, a structured process for selecting and collecting data and a systematic thematic analysis of results. RESULTS A total of 42 papers were included in the review; 23 used quantitative methods, 16 used qualitative methods and 3 were mixed methods studies. The majority of papers came from just four countries: UK (10), Australia (8), Brazil (6) and the USA (5). Key categories of impact identified in the thematic analysis were diagnostic delay and uncertainty; ‘QoL’ and everyday activities; intimate relationships; planning for and having children; education and work; mental health and emotional wellbeing and medical management and self-management. CONCLUSIONS Endometriosis has a significant social and psychological impact on the lives of women across several domains. Many studies have methodological limitations and there are significant gaps in the literature especially in relation to a consideration of the impact on partners and children. We recommend additional prospective and longitudinal research utilizing mixed methods approaches and endometriosis-specific instruments to explore the impact of endometriosis in more diverse populations and settings. Furthermore, there is an urgent need to develop and evaluate interventions for supporting women and partners living with this chronic and often debilitating condition.Item Metadata only Treatment decision-making and support needs in heterosexual couples living with endometriosis(2015-06) Mitchell, H.; Hudson, Nicky; Culley, Lorraine; Law, Caroline; Denny, E.; Raine-Fenning, N.Endometriosis impacts upon a range of domains including intimate relationships. However, previous research has focused on the woman at the expense of her partner who may also be negatively affected by the condition and its treatment. Couples were interviewed to provide in-depth data on living with endometriosis, either as patient or partner. This paper focuses on decision-making regarding management, and couples’ information and support needs. Twenty-two heterosexual couples, together for at least 12 months, and where the woman had laparoscopically-diagnosed endometriosis, were recruited via NHS clinics, support groups and snowball sampling. Separate, in-depth, face-to-face interviews (n=44) were conducted and transcribed verbatim. Data were analysed thematically and dyadically. Treatment decisions had implications for both partners. The majority of couples reported discussing surgical and medical options together, with men being described as ‘largely supportive’. However, whilst women reflected on living with and managing the condition in the longer term, men reported a desire for a cure and, for some partners, hysterectomy was perceived as a way to “fix” endometriosis. Healthcare professionals need to consider the role of partners in treatment decision-making and be aware that within the couple unit patients and partners may have differing views about how endometriosis should be treated. Signposting to support groups and relevant information, along with couple-focused information that highlights the effect of endometriosis on relationships, would be welcomed by patients and their partners. In addition, men highlighted the need for advice on how best to support their partner and cope with living with endometriosis themselves.Item Open Access ‘We needed to change the mission statement of the marriage’: biographical disruptions, appraisals and revisions among couples living with endometriosis(Wiley, 2015-12-17) 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.