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With the continued expansion and commercialisation of fertility treatments, the selection and matching of donors have become more sophisticated and technologised. As part of this landscape, new form of genetic screening: 'expanded carrier screening' (ECS) is being offered as a technique to avoid the risk of donors passing on genetic conditions to future offspring. Allowing donors to be tested for hundreds of genetic conditions simultaneously, ECS marks a considerable departure from traditional 'family history' models of screening, which rely on an individual's knowledge of family health. There is growing evidence of a drive towards the use of ECS within the fertility sector, and a growing number of clinics are offering it for a fee, as part of an egg or sperm donation cycle or as an add-on to IVF treatment. In this article, we use methods of critical reflection to synthesise data from two studies to explore how ECS is being used to avoid genetic risk in IVF treatment using donor gametes. We suggest that ECS is a new form of repro-genetic selection-a selective reproductive technology-with specific and important implications for donors, recipients and clinicians and with the potential to reconfigure the scope and application of gamete donation. We examine these implications and conclude that the existing policy blind spot relating to this development in fertility treatment practice needs to be urgently addressed., (© 2024 The Author(s). Bioethics published by John Wiley & Sons Ltd.)

Background: There is a substantial body of literature that discusses the problematic nature of asylum seeker healthcare in several European countries. However, little is known about how asylum seekers experience primary healthcare in Malta., Aim: This paper draws on a qualitative study that aimed to explore the nature of healthcare encounters between asylum seekers and healthcare professionals in Maltese primary healthcare and the contextual processes which influence these interactions., Methodology: The study utilised critical ethnography, informed by postcolonial theory. Data were collected through observation of encounters between healthcare professionals and asylum seekers (130 hours) and in-depth interviews with asylum seekers ( n 11), cultural mediators ( n 4) and Maltese healthcare professionals ( n 7)., Results: Thematic analysis of the combined data resulted in three themes: 'the impact of seeking refuge', 'seeking mutual understanding' and 'seeking resolution'. Healthcare encounters between asylum seekers and professionals are characterised by 'othering' practices, pre-conceived expectations and mutual mistrust. These are shaped by a complex interplay of factors, including damaging experiences of migration, derogatory political and public discourses and inadequate resources., Conclusion: In Maltese primary care, healthcare encounters are highly problematic for both patients and professionals. Nurses could take the lead in developing services to assess complex needs and aid asylum seekers in navigating the healthcare system., Competing Interests: Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2022.)

The paper reports an integrative literature review of research into the psychosocial factors which shape the transition to parenthood in couples following non-donor in vitro fertilization in comparison with those conceiving spontaneously. Nineteen papers of non-donor IVF and SC mothers and fathers were included. Differences between groups were reported for a range of psychosocial measures during the transition from pregnancy to parenthood including: the control couples feel they have over their lives (locus of control), parental adjustment and child behaviour, parental stress, parental investment in the child, self-esteem and self-efficacy, greater levels of protectiveness (separation anxiety) towards child, marital and family functioning, family alliance, marital satisfaction and communication, as well as anxiety, indirect aggression and lowered respect for the child. We have conceptualised these differences as three substantive themes which reflect psychosocial factors shaping transition to parenthood in parents after non-donor AR: namely social support, relationships and emotional well-being, which are in turn influenced by gender differences. These findings have implications for health care professionals' assessment of individual couples' support needs.

Recent social science research in the field of parenting following assisted conception has focused on the experiences of donor-assisted conception and surrogacy. This article draws from a study which explored the experiences of the transition to early parenthood in 16 heterosexual non-donor couples and includes a specific consideration of the experiences of men as they navigate this journey. We argue that these couples' transition to early parenthood can be as complex and provisional as in other newer forms of family making as they struggle with an emerging identity as a parent after successful non-donor in vitro fertilisation following their experiences of infertility. Their family making is contingent upon their ability to work at integrating their experiences of infertility and in vitro fertilisation into their emerging identity as a parent. This struggle is prominent when they contemplate a further pregnancy. Considering a sibling causes them further uncertainty and anxiety because it reminds them of their infertile identify and the possibility of further in vitro fertilisation. We report novel findings about the experiences of this transition to parenthood: how couples' identity as parents is shaped by the losses and grief of infertility and the anxiety of in vitro fertilisation. We argue that their struggle with an emerging parenthood identity challenges the normative, naturalised view of non-donor heterosexual in vitro fertilisation parenthood. Our work contributes to the work on identity in parenthood after in vitro fertilisation in an ongoing effort to understand how assisted technologies shape infertile parents' lives. This article reports a small study with a relatively homogeneous sample recruited from one fertility clinic. Nevertheless as an exploratory study of an under researched topic, we discuss useful insights and ideas for further research with larger and more diverse samples.

Background: To describe how using a combined approach of community-based participatory research and intervention mapping principles could inform the development of a tailored complex intervention to improve management of asthma for South Asian (SA) children; Management and Interventions for Asthma (MIA) study., Methods: A qualitative study using interviews, focus groups, workshops, and modified intervention mapping procedures to develop an intervention planning framework in an urban community setting in Leicester, UK. The modified form of intervention mapping (IM) included: systematic evidence synthesis; community study; families and healthcare professionals study; and development of potential collaborative intervention strategies. Participants in the community study were 63 SA community members and 12 key informants; in-depth semi-structured interviews involved 30 SA families, 14 White British (WB) families and 37 Healthcare Professionals (HCPs) treating SA children living with asthma; prioritisation workshops involved 145 SA, 6 WB and 37 HCP participants; 30 participants in finalisation workshops., Results: Two key principles were utilised throughout the development of the intervention; community-based participatory research (CBPR) principles and intervention mapping (IM) procedures. The CBPR approach allowed close engagement with stakeholders and generated valuable knowledge to inform intervention development. It accounted for diverse perceptions and experiences with regard to asthma and recognised the priorities of patients and their families/caregivers for service improvement. The 'ACT on Asthma' programme was devised, comprising four arms of an intervention strategy: education and training, clinical support, advice centre and raising awareness, to be co-ordinated by a central team., Conclusions: The modified IM principles utilised in this study were systematic and informed by theory. The combined IM and participatory approach could be considered when tailoring interventions for other clinical problems within diverse communities. The IM approach to intervention development was however resource intensive. Working in meaningful collaboration with minority communities requires specific resources and a culturally competent methodology.

Very few studies have explored women's experiences of social egg freezing and the limited primary research on this topic has suggested that users find the process of freezing eggs emotionally challenging. We, therefore, undertook semi-structured interviews with 31 women who identified as undergoing egg freezing for social reasons in order to explore how female users of social egg freezing technology reported their experience of freezing eggs for 'social' reasons. Interviews lasted between 40 minutes and 2 hours, were audio recorded and transcribed verbatim. Data were analyzed using thematic analysis assisted by Nvivo 10. 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 women 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. 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.

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., (© 2020 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL (SHIL).)

Objective: To identify factors influencing the provision, utilisation and sustainability of midwifery units (MUs) in England., Design: Case studies, using individual interviews and focus groups, in six National Health Service (NHS) Trust maternity services in England., Setting and Participants: NHS maternity services in different geographical areas of England Maternity care staff and service users from six NHS Trusts: two Trusts where more than 20% of all women gave birth in MUs, two Trusts where less than 10% of all women gave birth in MUs and two Trusts without MUs. Obstetric, midwifery and neonatal clinical leaders, managers, service user representatives and commissioners were individually interviewed (n=57). Twenty-six focus groups were undertaken with midwives (n=60) and service users (n=52)., Main Outcome Measures: Factors influencing MU use., Findings: The study findings identify several barriers to the uptake of MUs. Within a context of a history of obstetric-led provision and lack of decision-maker awareness of the clinical and economic evidence, most Trust managers and clinicians do not regard their MU provision as being as important as their obstetric unit (OU) provision. Therefore, it does not get embedded as an equal and parallel component in the Trust's overall maternity package of care. The analysis illuminates how implementation of complex interventions in health services is influenced by a range of factors including the medicalisation of childbirth, perceived financial constraints, adequate leadership and institutional norms protecting the status quo., Conclusions: There are significant obstacles to MUs reaching their full potential, especially free-standing midwifery units. These include the lack of commitment by providers to embed MUs as an essential service provision alongside their OUs, an absence of leadership to drive through these changes and the capacity and willingness of providers to address women's information needs. If these remain unaddressed, childbearing women's access to MUs will continue to be restricted., Competing Interests: Competing interests: Professor Thornton reports being a member of the HTA and EME Boards. Dr Scanlon reports grants from NIHR, during the conduct of the study; personal fees from 'WHICH?', grants from NIHR, personal fees from National Perinatal Epidemiology Unit, personal fees from Rod Gibson Associates, personal fees from Midwifery Unit Network, outside the submitted work., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Problem: Despite clinical guidelines and policy promoting choice of place of birth, 14 Freestanding Midwifery Units were closed between 2008 and 2015, closures reported in the media as justified by low use and financial constraints., Background: The Birthplace in England Programme found that freestanding midwifery units provided the most cost-effective birthplace for women at low risk of complications. Women planning birth in a freestanding unit were less likely to experience interventions and serious morbidity than those planning obstetric unit birth, with no difference in outcomes for babies., Methods: This paper uses an interpretative technique developed for policy analysis to explore the representation of these closures in 191 news articles, to explore the public climate in which they occurred., Findings and Discussion: The articles focussed on underuse by women and financial constraints on services. Despite the inclusion of service user voices, the power of framing was held by service managers and commissioners. The analysis exposed how neoliberalist and austerity policies have privileged representation of individual consumer choice and market-driven provision as drivers of changes in health services. This normative framing presents the reasons given for closure as hard to refute and cultural norms persist that birth is safest in an obstetric setting, despite evidence to the contrary., Conclusion: The rise of neoliberalism and austerity in contemporary Britain has influenced the reform of maternity services, in particular the closure of midwifery units. Justifications given for closure silence other narratives, predominantly from service users, that attempt to present women's choice in terms of rights and a social model of care., (Copyright © 2018. Published by Elsevier Ltd.)

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.

Objective: Few qualitative studies have explored women's use of social egg freezing. Derived from an interview study of 31 participants, this article explores the motivations of women using this technology. Methods: Semi-structured interviews were conducted with 31 users of social egg freezing resident in 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 analyzed 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.

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., Competing Interests: Competing interests: During the MIA project, Monica Lakhanpaul was appointed as a National Institute for Health and Care Excellence (NICE) Fellow, member of the NHS Evidence advisory board, the Health Technology Assessment advisory panel and the Drugs and Therapeutics Bulletin editorial panel., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY. Published by BMJ.)

Objective: to describe the configuration of midwifery units, both alongside&free-standing, and obstetric units in England., Design: national survey amongst Heads of Midwifery in English Maternity Services SETTING: National Health Service (NHS) in England PARTICIPANTS: English Maternity Services Measurements descriptive statistics of Alongside Midwifery Units and Free-standing Midwifery Units and Obstetric Units and their annual births/year in English Maternity Services FINDINGS: alongside midwifery units have nearly doubled since 2010 (n = 53-97); free-standing midwifery units have increased slightly (n = 58-61). There has been a significant reduction in maternity services without either an alongside or free-standing midwifery unit (75-32). The percentage of all births in midwifery units has trebled, now representing 14% of all births in England. This masks significant differences in percentage of all births in midwifery units between different maternity services with a spread of 4% to 31%., Key Conclusions: In some areas of England, women have no access to a local midwifery unit, despite the National Institute for Health&Clinical Excellence (NICE) recommending them as an important place of birth option for low risk women. The numbers of midwifery units have increased significantly in England since 2010 but this growth is almost exclusively in alongside midwifery units. The percentage of women giving birth in midwifery units varies significantly between maternity services suggesting that many midwifery units are underutilised., Implications for Practice: Both the availability and utilisation of midwifery units in England could be improved., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

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.

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.

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., (© 2015 Foundation for the Sociology of Health & Illness.)

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 two cases (5%) reporting a more negative experience. Thematic analysis revealed 6 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' and 'care and respect'. The more challenging aspects were categorized 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.

This paper draws on the findings of the first survey of surrogacy arrangements in Human Fertilisation and Embryology Authority (HFEA) licensed fertility clinics since 1998. Given the complex social, ethical and legal issues involved, surrogacy continues to raise debate worldwide and fuel calls for increased domestic provision in developed countries. However, little is known about how recent changes have affected HFEA licensed clinics. A 24-item online survey was undertaken between August and October 2013, designed to improve understanding of recent trends and current practices associated with UK-based surrogacy, and consider the implications for future policy and practice in UK and cross-border surrogacy arrangements. The response rate was 51.4%, comprising 54 clinics. Quantitative data were analysed using descriptive statistics, and open-ended qualitative responses analysed for extending understanding. Of the participating clinics, 42.6% offered surrogacy (mostly gestational surrogacy). Heterosexual couples using gestational surrogacy were the largest group currently using services followed by male same-sex couples. Most clinics reported having encountered problems with surrogacy treatments, suggesting barriers still exist to expanding the UK provision of surrogacy arrangements. It is important that professionals are well informed about the legal implications of surrogacy and that clinics have consistent and appropriate operational protocols for surrogacy arrangements., (Copyright © 2015 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.)

A small number of studies from the USA and Europe have provided some data on the profile and characteristics of women who have undergone oocyte cryopreservation for what has been termed elective, social or non-medical reasons; however, little is known in a UK context about which women are undergoing oocyte cryopreservation or their reproductive intentions and actions after the procedure. Drawing on data from an exploratory study of 23 UK resident women who had undergone social oocyte cryopreservation, the demographic profile of these women, their reproductive intentions and actions are discussed, as well as their attitudes and intentions towards their cryopreserved oocytes should they never require them in treatment. The study found that, at the time of oocyte cryopreservation, women were on average 36.7 years of age, were university educated, with 65% of the sample holding further postgraduate or professional qualifications. Fifty-seven per cent of the participants were in professional employment. All participants identified as heterosexual and 87% were not in a relationship at the time of cryopreserving their oocytes. Most (88%) participants stated that they would donate unwanted oocytes to research or to other women for use in fertility treatment should they never require them., (Copyright © 2015 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.)

While there are currently few confirmed births from previously frozen eggs in the UK, the improved outcomes of new technologies of vitrification and intra-cytoplasmic sperm injection (ICSI) have led to the marketing of egg freezing for non-medical reasons, whereby women are offered the possibility of preserving their eggs until such time as they wish to have a child. Non-academic commentary on this phenomenon has commonly constructed it within a neo-liberal discourse of 'choice', whereby women are positioned as choosing to 'delay motherhood,' often for reasons relating to their careers. However, there have been relatively few research studies which explore either women's awareness and understandings of social egg freezing or the reasons why women consider or undertake egg freezing. This paper summarises the current academic discussion surrounding social egg freezing and outlines the limited body of empirical literature identified from a systematic search of relevant databases. The potential benefits and harms of social egg freezing and the ethical issues it raises are well rehearsed in existing literature, but there is limited empirical evidence about who is accessing social egg freezing, why they are taking this option and what their experiences and future intentions are.

Background: South Asian children with asthma are less likely to receive prescriptions and more likely to suffer uncontrolled symptoms and acute asthma admissions compared with White British children. Understanding barriers are therefore vital in addressing health inequalities. We undertook a systematic review identifying explanatory factors for barriers and facilitators to asthma management in South Asian children. South Asians were defined as individuals of Indian, Pakistani or Bangladeshi descent., Methods: Data Sources - Medline, HMIC, EMBASE, ASSIA, Web of Science, BNI, CINAHL, PsycINFO, OpenSIGLE, CRD, Scopus, NHS Evidence, Cochrane Library, Campbell Collaboration, RCPCH, ATS, ERS, Asthma UK, Google Scholar & Asthma Guidelines (BTS, GINA, ATS, Monash, NAEPP, Singapore & New Zealand) to August 2013.Inclusion Criteria - Qualitative, quantitative or mixed methods research with primary focus on identifying explanations for barriers and/or facilitators to asthma management in South Asian children aged 0-18 years with diagnosed/suspected asthma and/or carers and/or healthcare professionals.Data Extraction - Three authors independently reviewed, selected & extracted eligible articles with disagreements resolved by research team discussion., Results: 15 studies encompassing 25,755 children, 18,483 parents/carers and 239 healthcare professionals were included. Barriers and explanatory factors identified were:1. Lack of asthma knowledge in families and healthcare professionals.2. Under-use of preventer medications.3. Non-acceptance/denial of asthma.4. Over-reliance on Emergency Department management.5. Communication problems.6. Non-adherence to medication.7. Use of complementary therapies.Little facilitators regarding asthma management were identified., Conclusions: Several key issues were identified as likely to be ethnic-specific to South Asian families, rather than a reflection of minority status: impact of parental and professional knowledge and beliefs, health service utilisation pattern explanations and the impact of prejudice and stigmatisation. Other explanations such as language barriers are not strictly ethnic specific but instead reflect a minority position.Further research is required to identify why barriers exist, the mechanisms by which they impact on asthma management and how they can be overcome. Furthermore, understanding the difference between barriers and explanations that are ethnic-specific and those that are related to being a minority will enable the application of generic system-wide interventions where ethnicity is not the issue and ethnically-tailored interventions where needed.

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.

Assisted reproduction technologies have developed at an extraordinary rate in recent years. This, combined with the changing landscape of legal, technical and social possibilities, enables gay men to consider their options for fatherhood as new opportunities emerge for them to create families. Media coverage of gay celebrities embracing surrogacy as a way of having a family and high-profile legal cases have raised awareness of surrogacy across the world. However, gay fatherhood achieved through assisted reproduction is a highly under-researched area, both in the UK and internationally. The research that currently exists on gay fatherhood is largely related to gay men who become parents through processes such as adoption and fostering and children conceived through previous heterosexual relationships. Much of this evidence has centred on parenting experiences, the outcomes for children or the legal perspectives. This paper outlines the different types of surrogacy and the legal issues facing gay men who choose this route to parenthood, summarizes the limited research on gay men and surrogacy and discusses gaps in the current knowledge base., (Copyright © 2013 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.)

While social science research has begun to demonstrate the significant impact of infertility and involuntary childlessness for men, far fewer studies have specifically explored the male experience of, or men's involvement in, infertility treatment-seeking and there are few published studies which specifically describe men's experiences with cross-border reproduction. This paper presents data from the first UK study of transnational treatment-seeking and specifically explores men's involvement in this process. Data from interviews with 10 men and 34 women who were seeking treatment abroad are organized according to three themes: 'going along with it'; 'being a rock'; and 'doing their bit'. The paper argues that gender is an important aspect of the cross-border treatment experience and that both traditional and emergent gender identities are expressed in the process of treatment-seeking. Healthcare providers need to actively explore men's perspectives of the treatment process in all locations, to improve quality of care by reducing men's feelings of marginalization and enhancing their experience of treatment, especially but not exclusively, around the issue of semen collection., (Copyright © 2013 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.)

There is a wealth of research exploring the psychological consequences of infertility and assisted reproduction technology, a substantial body of sociological and anthropological work on 'reproductive disruptions' of many kinds and a small but growing literature on patient perspectives of the quality of care in assisted reproduction. In all these fields, research studies are far more likely to be focused on the understandings and experiences of women than those of men. This paper discusses reasons for the relative exclusion of men in what has been called the 'psycho-social' literature on infertility, comments on research on men from psychological and social perspectives and recent work on the quality of patient care, and makes suggestions for a reframing of the research agenda on men and assisted reproduction. Further research is needed in all areas, including: perceptions of infertility and infertility treatment seeking; experiences of treatment; information and support needs; decisions to end treatment; fatherhood post assisted conception; and the motivation and experiences of sperm donors and men who seek fatherhood through surrogacy or co-parenting. This paper argues for multimethod, interdisciplinary research that includes broader populations of men which can contribute to improved clinical practice and support for users of assisted reproduction treatment., (Copyright © 2013 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.)

Travel for the purposes of obtaining medical treatment is increasing, but very little is known about the extent or nature of child medical travel. This paper discusses the outcome of a systematic search for academic literature on paediatric medical travel, outlines the potential significance of 'return health migration' by parents and children from minority ethnic groups in the UK, and suggests an agenda for future multidisciplinary research in this field.

Involvement of service users in decision making, in both clinical and research settings, has become a central feature of many health and research funding policies in the last 15 years. Over the same timeframe, there has been an increasing focus on children's rights, promoted by the UN Convention of the Rights of the Child, which gives children a right to be involved in decisions that affect their lives. In a research setting, this has resulted in increased engagement of children in research, as opposed to relying on parents or carers to represent their children, and a shift from research on children to research with children. In this article, we discuss collaboration with children under the age of 16 years in health research: what this means and why (or why not) to do it. The definition of collaboration is discussed and the lines among collaboration, involvement, participation and participatory research considered. The risks and benefits of collaboration are reviewed, both theoretical and evidence based, where evidence exists. The review ends with a look towards the future including the need for agreed definitions, better reporting of collaboration and other patient and public involvement activities with children to build up the much needed evidence base, the need for cost-benefit evaluations and, most importantly, the need for careful consideration as to whether collaborating with children is appropriate in each circumstance.

This paper explores 'public' attitudes to the use of donated gametes in infertility treatment amongst members of British South Asian communities in the UK. The study included 14 single-sex focus groups with a total of 100 participants of Indian, Pakistani and Bangladeshi origins in three English cities and 20 individual semi-structured interviews with key informants. It explores five themes from the data: childlessness and stigma; using sperm and using eggs; cultural connections; choosing gametes; religion and the use of donated gametes; and disclosure and the management of information. The paper demonstrates that the socio-cultural context of fertility treatment is highly relevant and those delivering services and those consulting the public need to be aware of cultural and gender differences. Third party assisted conception represents a challenge to received ideas of identity and has implications for social reproduction and kinship which go well beyond immediate conjugal relationships.

Media reporting of 'fertility tourism' tends to portray those who travel as a cohesive group, marked by their desperation and/or selfishness and propensity towards morally questionable behaviour. However, to date little has been known about the profile of those leaving the UK for treatment. This paper discusses the first UK-based study of patient assisted reproduction travel that was designed to explore individual travel trajectories. It is argued that existing ways of conceptualizing cross-border reproductive care as 'fertility or reproductive tourism' are in danger of essentializing what the data suggest are diverse, complex and often ambiguous motivations for reproductive travel. The concept of seriality is used to suggest that, whilst 'reproductive tourists' share some characteristics, they also differ in significant ways. This paper argues that, through an examination of the personal landscapes of fertility travel, the diverse processes involved in reproductive travel can be better understood and policymakers can be assisted to avoid what might be regarded as simplistic responses to cross-border reproductive care., (Copyright © 2011 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.)

Objective: To describe the lay meanings of sickle cell disease (SCD) in the Ashanti region of Ghana., Design: Depth interviews with 31 fathers of people with SCD; a focus group with health professionals associated with the newborn sickle cell screening programme, and a focus group with mothers of children with SCD., Results: Whilst there are discourses that associate sickle cell with early or recurrent death, with supernatural undermining of family well-being, and with economic challenges in purchasing medical care, other discourses that value children and other family practices that resist stigma are also in evidence., Conclusion: Lay perspectives on SCD are constructed in the contexts of enduring culture (the high value placed on children); changing culture (medicine and research as available alternative discourses to supernatural ones); altered material circumstances (newborn screening producing cohorts of children with SCD); changing political situations (insurance-based treatment); enhanced family resources (the experience of a cohort of young people with SCD). Above all the praxis of successfully caring for a child with SCD, and the political experience of sharing that praxis, stands in opposition to discourses of death and helps parents resist stigma and despair.

Cross-border reproductive care (CBRC) has attracted considerable attention in media and professional publications. The aim of this review is to present a critical narrative overview of the published evidence on CBRC. A systematic search of key academic databases was undertaken with no time restrictions set for publication. This was supplemented by additional searches of key websites, reference chaining and enquiries to people working in the field. A total of 54 items are included in the review, including both empirical research studies (18) and debate papers (36). The key themes discussed are: terminology and definitions; incidence; experiences; explanations; implications; and policy responses. Significant methodological limitations and gaps in the literature are identified. Evidence on incidence is scant, though it suggests that CBRC is increasing. The literature suggests legal, social and political drivers, which vary in importance geographically and between individuals. Limited findings on patient perceptions suggest a broadly positive patient experience. Suggested policy responses include prohibition, regulatory harmonization and harm minimization. There is a need for better international data collection tools and both quantitative and qualitative work which encompasses views of patients, donors, surrogates and professionals and which explores the implications for healthcare services in sending countries., (Copyright © 2011 Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.)

The experiences of young people living with a sickle cell disorder in schools in England are reported through a thematic analysis of forty interviews, using Bourdieu's notions of field, capital and habitus. Young people with sickle cell are found to be habitually dys-positioned between the demands of the clinic for health maintenance through self-care and the field of the school, with its emphases on routines, consistent attendance and contextual demands for active and passive pupil behaviour. The tactics or dispositions that young people living with sickle cell can then employ, during strategy and struggle at school, are therefore fragile: they work only contingently, transiently or have the unintended consequences of displacing other valued social relations. The dispositions of the young people with sickle cell are framed by other social struggles: innovations in school procedures merely address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers inform, liaise, negotiate and advocate in support of a child with sickle cell but with limited success. Reactions of teachers and peers to sickle cell have the enduring potential to drain the somatic, cultural and social capital of young people living with sickle cell., (© 2011 The Authors. Sociology of Health & Illness © 2011 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.)

Sickle cell is a leading genetic condition, both globally and in England. Little research has been conducted into the experiences of young people with sickle cell at school. A mixed methods study (May 2007-September 2008) based on 569 questionnaires and 40 taped interviews with young people living with sickle cell disorder (SCD) in England found that students with SCD are faced with a dilemma as to whether or not to disclose their sickle cell to teachers and pupils: the latent and hidden characteristics of their symptoms make it possible, in Goffmanesque terms, to "pass". However the variable and unpredictable course of sickle cell is a reminder of Goffman's notion of being "discreditable". We found that teacher or pupil knowledge that a young person has sickle cell is not statistically associated with reported better treatment of young people with SCD at school. Analysis of interviews suggests most young people favour disclosing their sickle cell status (on the basis that teachers will then know what actions to take in the face of bouts of illness and in terms of making allowances for illness or school absences). A minority disagreed because disclosure was felt to attract unwarranted attention or disabling attitudes. Attitudes to disclosing to peers were more varied: either for or against disclosure to peers, or ambivalent in that they felt a tension between acknowledging the reality of their sickle cell, and not wanting it to be a central part of their identity. Some health promotion advice appears to assume that teacher and/or peer awareness is the key to improving school experience for young people with SCD, but this is not borne out by this study. Rather a change in wider school environments is required such that young people with SCD are supported irrespective of whether they themselves foreground or play down their disabled identity., (Copyright 2010 Elsevier Ltd. All rights reserved.)

This paper reviews the literature on "public" perceptions of the practice of gamete (egg and sperm) donation in the treatment of infertility. Despite regular "consultation" exercises in the UK on the manner in which infertility treatments should be regulated, there is little sense of how a range of public groups respond to developments in this area. The key themes from thirty-three articles, chapters and reports are discussed. The review reveals the limited nature of our current knowledge of public understandings of and attitudes towards gamete donation as a form of infertility treatment which has been readily available and widely practiced for many years. The review is critical of the methodological and epistemological basis of much of the work in this area and argues that there is a strong case for social scientific research to attempt to capture the perceptions of a wider range of people who are rarely included in formal public consultations and often similarly excluded from research studies.

Little attention has been given to the specific methodological issues that can accompany the use of focus groups with minority ethnic communities in the United Kingdom. In this article, the authors discuss the use of this method in a study of the provision of infertility services to South Asian communities in three English cities. Focus groups are an invaluable research method for working in a diverse linguistic and cultural environment, providing interesting, rich, and complex data. However, their use can raise significant methodological and ethical challenges for researchers working with minority ethnic communities. The authors discuss key issues that arose in their exploration of ethnicity and infertility around language and cultural diversity, the role of community facilitators, access and recruitment, infertility as a "sensitive" topic, and reciprocity in research relations.

This paper offers a critical commentary on the essentialist concept of ethnicity, which, it is argued, underpins the discourse of transcultural health-care. Following a consideration of the difficulties that ensue from the way in which ethnicity has been theorised within transcultural nursing in particular, the paper turns to a consideration of alternative ways of thinking about ethnicity, which have emerged from more recent social anthropology and postmodernism. It addresses the question of how to therorise ethnicity in a way that does not entail its reification as a set of fixed cultural properties, and makes some tentative suggestions for the possibility of a critical culturalist approach to difference and healthcare practice, which must include a consideration of racisms.

Unlabelled: Concepts allied to ethnicity are increasingly coming under question as legitimate variables for use in health research. A randomised controlled trial of two ethnicity screening questions for ascertaining risk of carrying genes associated with sickle cell and thalassaemia illustrates the challenges and limitations of assessing an association of social constructs and genetic statuses., Objectives: To evaluate two candidate ethnicity screening questions in antenatal screening programmes in low, mixed and high sickle cell prevalence areas, and to identify time taken in administration of the questions by use of the following measures: (1) Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview. (2) Numbers of carriers of clinically significant haemoglobin disorders missed by ethnicity screening questions. (3) Time taken to explain screening question for sickle cell disease (SCD)/thalassaemia and obtain ethnic/family origins. (4) Proportion of clients providing usable ethnic/family origins data. (5) Reported ethnic/family origins in pregnant women at first booking with midwife., Design: Ten-month (September 2002-June 2003) questionnaire study with random allocation to two self-administered ethnicity questions, comparison with laboratory results and results from re-interview. The settings were antenatal booking clinics in four geographical areas of England of varying expected foetal prevalence of SCD: very high (29.75 per 10,000 pregnancies); high (8.2); mixed high and low (1.29); and low (0.18). The subjects were 4,559 pregnant women at first booking with midwife., Results: Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview were 4.33% (CI 2.63-6.68%) for a category-based question and 9.45% (CI 6.86-12.61%) for a binary plus open-ended question. Proportions of carriers missed were 5.74% (CI 2.34-11.46%) and 9.71% (CI 4.75-17.13%) by category-based and binary plus open-ended questions, respectively. Average time taken to ascertain ethnic/family origins for screening was between 2.17 and 5.12 minutes in different areas, and up to 15 minutes at the 95th centile. Usable ethnicity screening data was missing in 2.94% of instances. Errors in interpretation or missing data were 3.2% for a category-based question and 4.71% for a binary plus open-ended ethnicity question. Ethnicity Question A produces fewer cases of missing or misinterpreted data (p < 0.001)., Conclusions: A category-based ethnicity screening question was more effective than a binary plus open-ended question. Using the more effective question, 5.74% (CI 2.34-11.46%) of significant haemoglobinopathies will be missed in a selective screening programme, and 4.33% (CI 2.63-6.68%) of replies to an ethnicity screening question will be unreliable when compared to information given upon re-interview. In specific carefully circumscribed situations, namely, in antenatal screening for sickle cell and thalassaemia, it is possible to measure the degree of association between social constructs of ethnicity and health status in a manner that may help in effecting policy decisions.

This paper presents key findings from the first major study of the provision of infertility services to South Asian communities in the UK. The research aimed to explore the social meanings of infertility and to examine the experiences of couples receiving fertility treatment. Focus groups with people from Pakistani, Bangladeshi and Indian communities (n = 93) revealed a strongly pro-natalist ideology and a relatively limited knowledge of infertility and treatments. Interviews with 50 participants from the same communities revealed a general satisfaction with secondary level infertility services. However, a minority felt inadequately informed about their condition, tests undertaken and treatment options; only one-third were given any written information about treatment; many were concerned about delays and waiting times; a minority felt that staff could be more sympathetic in their response to 'failed' treatment and several couples suggested that additional emotional support would be helpful. No information or resources were available in any South Asian language and the arrangements for communication support for non-English speakers were generally less than adequate. There was little evidence of the use of data on ethnic or religious background in infertility clinics. Recommendations for policy and practice are proposed.

Rationale: Nurse cadet schemes are locally developed initiatives which prepare participants for entry to preregistration nurse education. The paper discusses the political context in which modern day nurse cadet schemes have developed in the British National Health Service and explores the diversity of schemes currently operating in the United Kingdom (UK)., Background: Nursing recruitment is a high priority for the National Health Service in the UK which, in common with many countries, is facing a nursing shortage. In addition, the government is committed to increasing flexibility in the education and recruitment of staff. The entry gate to health professional education needs to be widened to improve access for hitherto under-represented groups., Methods: The paper provides a critical commentary on key issues in the development of nurse cadet schemes as discussed in a range publications, together with information gathered from 'grey' literature and personal contacts in nurse education. A wide range of health care and social science databases was used to collect material for the discussion., Findings: Approximately 800 cadets are currently engaged in around 60 cadet schemes in a number of localities in Britain, and it is proposed that these will be expanded to over 2000 nurse cadets by 2004. Nurse cadet schemes have developed to meet local needs and priorities and, in the absence of a strong national framework, a wide diversity of participants, curricula and funding arrangements have emerged., Conclusions: Serious consideration needs to be given to further standardization in the structure and funding of schemes to reduce the degree of inequality which currently exists for cadets, together with development of national benchmarks to ensure that a set of minimum standards is met. Any future development must be built on a systematic evaluation of current schemes, which has yet to be undertaken.