Men, chronic illness and healthwork: accounts from male partners of women with endometriosis.

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.

Changing Social Norms: the Importance of "Organized Diffusion" for Scaling Up Community Health Promotion and Women Empowerment Interventions.

Some harmful practices are sustained by social norms-collective beliefs about what people expect from each other. Practitioners and researchers alike have been investigating the potential of social norms theory to inform the design of effective interventions addressing these practices in low- and middle-income countries. One approach commonly used to facilitate social norms change is community-based dialogs and trainings. This approach has often been criticized for not being cost-effective, as it usually includes a relatively small number of direct participants and does not allow for scaling-up strategies. In spite of some evidence (as for instance, the SASA! Program) that community dialogs can achieve social norms change, little exists in the literature about how exactly participants in community dialogs engage others in their networks to achieve change. In this paper, we look at the potential of "organized diffusion" as a cost-effective strategy to expand the positive effects of community-based interventions to participants' networks, achieving sustainable normative shifts. We provide quantitative evidence from three case studies-Community Empowerment Program in Mali, Change Starts at Home in Nepal, and Voices for Change in Nigeria-showing that participants in community-based interventions can be effectively empowered to share their new knowledge and understandings systematically with others in their networks, eventually facilitating social norms change. Future community-based interventions intending to achieve social norms change would benefit from integrating ways to help participants engage others in their network in transformative conversations. Doing so has the potential to generate additional impact with little additional investment.

'We needed to change the mission statement of the marriage': biographical disruptions, appraisals and revisions among couples living with endometriosis.

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.

Exploratory study on meeting the health social care needs of mothers with twins.

Parents of twins face many challenges and difficulties. These can include: the impact of a multiple birth on family life; the impact of preterm birth; coping and adapting to parenthood, particularly during the first year; managing the mismatch between support needed and support received; and the impact of all these factors on the health and wellbeing of themselves, their children and their wider family. The aim of this phenomenological study was to gain insight into parents' experiences and to inform service provision. Seven semistructured, audio-recorded interviews were conducted with mothers in their own home. The interviews were transcribed verbatim and analysed using qualitative methods. Five key themes were identified: Assumptions vs reality; Worries and concerns; Impact on self; Impact on others; and Sources of support. These themes provide insight into the challenges and difficulties encountered by mothers of twins. For most families, the care and support they received during this time was community based and the findings highlighted a need for healthcare professionals to be better informed about the advice and support needed by these families.

Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis.

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.

I never know from one day to another how I will feel: pain and uncertainty in women with endometriosis.

Endometriosis is a chronic condition of women in which endometrial tissue is present outside of the uterus. It is characterized by pelvic pain. The aim of this prospective study was to explore women's experience of living with endometriosis. A sample of 30 women was recruited from a dedicated endometriosis clinic. Semistructured interviews were conducted upon recruitment and after one year, these data being supplemented by diary keeping by a volunteer sample. As a storytelling approach was utilized for data collection, narrative analysis was considered most appropriate. The findings are presented using the concept of uncertainty, which has been found in previous research to be a feature of long-term illness. Uncertainty exists around diagnosis, the course of the disease, and the future. It is argued that the way in which the pain of endometriosis is interpreted and managed by women and health professionals is integral to this uncertainty.

Endometriosis and the primary care consultation.

OBJECTIVES: Endometriosis is a long term, disabling condition, and a common cause of chronic pelvic pain. Symptomatic disease is usually characterised by pelvic and abdominal pain, lower back pain, and dyspareunia, all of which may be severe and debilitating. Yet the time between onset of symptoms and diagnosis is frequently a number of years, and many women report negative experience within the primary care setting. This paper explores the experience of women with endometriosis in the primary care setting. STUDY DESIGN: A qualitative research design was considered appropriate to elicit the experience of endometriosis and the impact on women's lives. Semi-structured interviews were conducted with 30 women who suffer with endometriosis. The sample was recruited via a dedicated endometriosis clinic in the English Midlands, and participants had all been diagnosed laparoscopically with endometriosis. RESULTS: Participants described diverse experiences within the primary care setting. Although some women reported a positive relationship with their general practitioner, over half had had negative experiences, which they felt had contributed to delays in them receiving a diagnosis of endometriosis. CONCLUSION: The delay in diagnosis can be reduced and perceived attitudes of general practitioners towards women presenting with endometriosis can be improved by being alert to certain symptomology, and by detailed and sensitive history taking.

Women's experiences of medical treatment for endometriosis and its impact on PRE-EMPT trial participation: a qualitative study.

BACKGROUND: Endometriosis is a common cause of chronic pelvic pain which can relapse after surgery, yet little research has been conducted on women's experience of medical treatments for prevention of recurrence and the influence of this on participation in clinical trials. METHODS: This study explored women's past experiences with medical treatments for endometriosis symptoms and the impact this has on their motivation to enter the pilot phase of a post-conservative surgery clinical trial, PRE-EMPT: Preventing Recurrence of Endometriosis by Means of long acting Progestogen Therapy. Qualitative methodology was adopted, involving semi-structured interviews in three UK cities, and one focus group was used to collect data from women with a diagnosis of endometriosis participating in the PRE-EMPT trial. RESULTS: Ten women were interviewed individually and four took part in the focus group discussion. Women's willingness to enter the PRE-EMPT trial was bound up with their previous experiences, present situation and future expectations of medication, as well as the control offered by flexible randomisation which allows the option to reject a particular treatment post-surgery. CONCLUSION: Women were strongly influenced by previous experience and personal circumstances in their decision to enter the PRE-EMPT trial. This decision was facilitated by the ability to 'opt out' of the treatment arm(s) they found unacceptable. This element of choice offered patients a sense of control in the randomisation process and has important implications for clinical trial design and recruitment. TRIAL REGISTRATION: ISRCTN97865475. EUDRACT number 2013-001984-21.

AntiEpileptic drug Monitoring in PREgnancy (EMPiRE): a double-blind randomised trial on effectiveness and acceptability of monitoring strategies.

BACKGROUND: Pregnant women with epilepsy on antiepileptic drugs (AEDs) may experience a reduction in serum AED levels. This has the potential to worsen seizure control. OBJECTIVE: To determine if, in pregnant women with epilepsy on AEDs, additional therapeutic drug monitoring reduces seizure deterioration compared with clinical features monitoring after a reduction in serum AED levels. DESIGN: A double-blind, randomised trial nested within a cohort study was conducted and a qualitative study of acceptability of the two strategies was undertaken. Stratified block randomisation with a 1 : 1 allocation method was carried out. SETTING: Fifty obstetric and epilepsy clinics in secondary and tertiary care units in the UK. PARTICIPANTS: Pregnant women with epilepsy on one or more of the following AEDs: lamotrigine, carbamazepine, phenytoin or levetiracetam. Women with a ≥ 25% decrease in serum AED level from baseline were randomised to therapeutic drug monitoring or clinical features monitoring strategies. INTERVENTIONS: In the therapeutic drug monitoring group, clinicians had access to clinical findings and monthly serum AED levels to guide AED dosage adjustment for seizure control. In the clinical features monitoring group, AED dosage adjustment was based only on clinical features. MAIN OUTCOME MEASURES: Primary outcome - seizure deterioration, defined as time to first seizure and to all seizures after randomisation per woman until 6 weeks post partum. Secondary outcomes - pregnancy complications in mother and offspring, maternal quality of life, seizure rates in cohorts with stable serum AED level, AED dose exposure and adverse events related to AEDs. ANALYSIS: Analysis of time to first and to all seizures after randomisation was performed using a Cox proportional hazards model, and multivariate failure time analysis by the Andersen-Gill model. The effects were reported as hazard ratios (HRs) with 95% confidence intervals (CIs). Secondary outcomes were reported as mean differences (MDs) or odds ratios. RESULTS: A total of 130 women were randomised to the therapeutic drug monitoring group and 133 to the clinical features monitoring group; 294 women did not have a reduction in serum AED level. A total of 127 women in the therapeutic drug monitoring group and 130 women in the clinical features monitoring group (98% of complete data) were included in the primary analysis. There were no significant differences in the time to first seizure (HR 0.82, 95% CI 0.55 to 1.2) or timing of all seizures after randomisation (HR 1.3, 95% CI 0.7 to 2.5) between both trial groups. In comparison with the group with stable serum AED levels, there were no significant increases in seizures in the clinical features monitoring (odds ratio 0.93, 95% CI 0.56 to 1.5) or therapeutic drug monitoring group (odds ratio 0.93, 95% CI 0.56 to 1.5) associated with a reduction in serum AED levels. Maternal and neonatal outcomes were similar in both groups, except for higher cord blood levels of lamotrigine (MD 0.55 mg/l, 95% CI 0.11 to 1 mg/l) or levetiracetam (MD 7.8 mg/l, 95% CI 0.86 to 14.8 mg/l) in the therapeutic drug monitoring group than in the clinical features monitoring group. There were no differences between the groups on daily AED exposure or quality of life. An increase in exposure to lamotrigine, levetiracetam and carbamazepine significantly increased the cord blood levels of the AEDs, but not maternal or fetal complications. Women with epilepsy perceived the need for weighing up their increased vulnerability to seizures during pregnancy against the side effects of AEDs. LIMITATIONS: Fewer women than the original target were recruited. CONCLUSION: There is no evidence to suggest that regular monitoring of serum AED levels in pregnancy improves seizure control or affects maternal or fetal outcomes. FUTURE WORK RECOMMENDATIONS: Further evaluation of the risks of seizure deterioration for various threshold levels of reduction in AEDs and the long-term neurodevelopment of infants born to mothers in both randomised groups is needed. An individualised prediction model will help to identify those women who need close monitoring in pregnancy. TRIAL REGISTRATION: Current Controlled Trials ISRCTN01253916. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 23. See the NIHR Journals Library website for further project information.

Endometriosis-associated dyspareunia: the impact on women's lives.

BACKGROUND AND METHODOLOGY: Endometriosis is a chronic condition in which endometrial glands and stroma are present outside of the uterus. Whereas chronic pelvic pain is the most commonly experienced pain of endometriosis, many women also suffer from deep dyspareunia. In order to determine how much of an impact endometriosis-associated dyspareunia has on the lives and relationships of women a qualitative study using semi-structured interviews, supplemented with quantitative data on the extent of dyspareunia, was conducted in a dedicated endometriosis clinic in the West Midlands, UK with 30 women aged from 19 to 44 years. RESULTS: The main outcome measures were the extent of dyspareunia within the sample of women, and the impact of dyspareunia on quality of life. The experience of dyspareunia was found to be higher than in previous research. Three main themes emerged. The experience of pain was found to limit sexual activity for the majority of the sample, with a minority ceasing to be sexually active. Lack of sexual activity resulted in a lowering of self-esteem and a negative effect on relationships with partners, although the experience differed between younger and older women. DISCUSSION AND CONCLUSIONS: The experience of dyspareunia is a significant factor in the quality of life and relationships for women living with endometriosis. For most of the women in the study it was very severe and resulted in their reducing or curtailing sexual activity. Qualitative research can produce salient data that highlight the impact of dyspareunia on self-esteem and sexual relationships.

A clinical overview of endometriosis: a misunderstood disease.

Endometriosis is the presence of endometrial glands and stroma outside the endometrial cavity and is the most common known cause of pelvic pain. The number of women being diagnosed with the disease is increasing, but this may be reflective of improved diagnostic techniques. The aetiology is unknown, although the theory of retrograde menstruation remains dominant. Although pain around menstruation is the most frequently experienced symptom, dyspareunia, dyschezia, cyclical dysuria and extreme fatigue are all common. The 'gold standard' diagnostic technique is laparoscopic visualization, and the Royal College of Obstetricians and Gynaecologists (2006) recommends that surgical removal of all endometriotic lesions is the ideal. The experience of endometriosis can negatively affect all aspects of a woman's life and relationships, and this is consistently reported in research studies. This article discusses the aetiology and clinical aspects of endometriosis as well as giving an overview of empirical literature surrounding the experience of the disease. It provides nurses with the knowledge to be alert to the possibility of endometriosis as a diagnosis in women with a certain set of symptoms, in whatever healthcare setting they work.

Re-working biographies: Women's narratives of pregnancy whilst living with epilepsy.

This paper explores the multiple ways experiences of pregnancy and early motherhood come to 'rework' the biographies of women living with epilepsy. Pregnancy is explored as a temporarily concurrent status alongside the long-term condition of epilepsy. Narrative interviews were conducted with 32 women from across the UK. Analysis of these narratives suggests that biographical disruption and continuity are both useful in the conceptualisation of women's diverse experiences of pregnancy and epilepsy. Such findings challenge the notion that the presence of a condition over a long period of time leads to the normalisation of illness. Participants' narratives demonstrate that, for some, pregnancy and early motherhood may be disruptive and can raise concerns regarding an ever present condition that may previously have been taken for granted. Findings also indicate the need for a greater consideration of gender and care responsibilities, as well explorations of concomitant conditions, in the theorising of biographies and chronic illness.

A patient-preference cohort study of office versus inpatient uterine polyp treatment for abnormal uterine bleeding.

Uterine polyps can cause abnormal bleeding in women. Conventional practise is to remove them under general anaesthesia but advances in technology have made it possible to perform polypectomy in the office setting. We conducted a patient-preference study to explore women's preferences for treatment setting and to evaluate the effectiveness and treatment experience of women undergoing uterine polypectomy. Three hundred ninety-nine women with abnormal uterine bleeding who were found to have uterine polyps at diagnostic hysteroscopy were recruited. Office polypectomies were performed in office hysteroscopy clinics, and inpatient procedures were undertaken in operating theatres. Three hundred twenty-four of 399 (81 %) expressed a preference for office treatment. There was no difference found between office treatment and inpatient treatment in terms of alleviating abnormal uterine bleeding as assessed by patients and in improving disease-specific quality of life. Acceptability was lower and patient pain scores were significantly higher in the office group. When offered a choice of treatment setting for uterine polypectomy, patients have a preference for office over inpatient treatment. Ambulatory gynaecology services should be available within healthcare systems to meet patient demand.

Outpatient versus inpatient uterine polyp treatment for abnormal uterine bleeding: randomised controlled non-inferiority study.

OBJECTIVE: To compare the effectiveness and acceptability of outpatient polypectomy with inpatient polypectomy. DESIGN: Pragmatic multicentre randomised controlled non-inferiority study. SETTING: Outpatient hysteroscopy clinics in 31 UK National Health Service hospitals. PARTICIPANTS: 507 women who attended as outpatients for diagnostic hysteroscopy because of abnormal uterine bleeding and were found to have uterine polyps. INTERVENTIONS: Participants were randomly assigned to either outpatient uterine polypectomy under local anaesthetic or inpatient uterine polypectomy under general anaesthesia. Data were collected on women's self reported bleeding symptoms at baseline and at 6, 12, and 24 months. Data were also collected on pain and acceptability of the procedure at the time of polypectomy. MAIN OUTCOME MEASURES: The primary outcome was successful treatment, determined by the women's assessment of bleeding at six months, with a prespecified non-inferiority margin of 25%. Secondary outcomes included generic (EQ-5D) and disease specific (menorrhagia multi-attribute scale) quality of life, and feasibility and acceptability of the procedure. RESULTS: 73% (166/228) of women in the outpatient group and 80% (168/211) in the inpatient group reported successful treatment at six months (intention to treat relative risk 0.91, 95% confidence interval 0.82 to 1.02; per protocol relative risk 0.92, 0.82 to 1.02). Failure to remove polyps was higher (19% v 7%; relative risk 2.5, 1.5 to 4.1) and acceptability of the procedure was lower (83% v 92%; 0.90, 0.84 to 0.97) in the outpatient group Quality of life did not differ significantly between the groups. Four uterine perforations, one of which necessitated bowel resection, all occurred in the inpatient group. CONCLUSIONS: Outpatient polypectomy was non-inferior to inpatient polypectomy. Failure to remove a uterine polyp was, however, more likely with outpatient polypectomy and acceptability of the procedure was slightly lower. TRIAL REGISTRATION: International Clinical Trials Registry 65868569.