Nicky Hudson

Using Focus Groups With Minority Ethnic Communities: Researching Infertility in British South Asian Communities

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.

Cross-border reproductive care: A review of the literature.

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.

Crossing borders for fertility treatment: motivations, destinations and outcomes of UK fertility travellers

BACKGROUND There are few systematic studies of the incidence of cross-border fertility care and even fewer reports of qualitative research with those undertaking treatment outside their country of origin. This paper reports findings from a qualitative study of UK residents with experience of cross-border care: the socio-demographic characteristics of UK travellers; their reasons for seeking treatment abroad; the treatments they sought; the destinations they chose and the outcomes of their treatment. METHODS Data regarding cross-border fertility treatment were collected from a purposive sample of 51 people by means of in-depth, semi-structured interviews between May 2009 and June 2010. Data were analysed using a systematic thematic coding method and also subjected to quantitative translation. RESULTS Patient motivations for travelling abroad are complex. A desire for timely and affordable treatment with donor gametes was evident in a high number of cases (71%). However, most people gave several reasons, including: the cost of UK treatment; higher success rates abroad; treatment in a less stressful environment and dissatisfaction with UK treatment. People travelled to 13 different countries, the most popular being Spain and the Czech Republic. Most organized their own treatment and travel. The mean age of women seeking treatment was 38.8 years (range 29-46 years) and the multiple pregnancy rate was 19%. CONCLUSIONS UK residents have diverse reasons for, and approaches to, seeking overseas treatment and do not conform to media stereotypes. Further research is needed to explore implications of cross-border treatment for donors, offspring and healthcare systems.

Oocyte cryopreservation for social reasons: demographic profile and disposal intentions of UK users

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.

Gay men seeking surrogacy to achieve parenthood

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.

“Public” perceptions of gamete donation: a research review

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.

British South Asian communities and infertility services

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.

Reproductive technology and the life course: Current debates and research in social egg freezing

Abstract 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 womens 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.

Motivations and barriers to exercise in chronic kidney disease: a qualitative study

BACKGROUND Exercise has the potential to modulate a number of complications associated with chronic kidney disease (CKD). However, typically, CKD patients lead very sedentary lifestyles, the reasons for which are not fully known. The aim of this qualitative study was to gain an understanding of the motivators, barriers and beliefs held by CKD patients regarding exercise. METHODS We conducted 3 focus groups and 22 semi-structured interviews. Data were collected from nephrology outpatient clinics in the United Kingdom. A total of 36 individuals with CKD stages 1-5 not requiring renal replacement therapy, aged 26-83 years participated in this study. This manuscript outlines the findings from patients with CKD stages 3-5. Focus groups and interviews were transcribed verbatim and analysed thematically. RESULTS Positive attitudes to exercise reflected autonomous motivations including: exercising for health; enjoyment and social interaction. Family support and goal setting were seen as motivators for exercise and the accessibility of local facilities influenced activity levels. Barriers to exercise were poor health, fear of injury or aggravating their condition, a lack of guidance from healthcare professionals and a lack of facilities. CONCLUSIONS These findings are an important first stage in the development of a CKD-specific exercise behaviour change intervention. Interventions should operate at multiple levels, with a focus on improving patient autonomy and exercise self-efficacy, support networks and the physical environment (e.g. the accessibility of local facilities). In addition, strategies are required to ensure that the healthcare system is actively promoting and routinely supporting exercise for all patients with CKD.

A systematic review of explanatory factors of barriers and facilitators to improving asthma management in South Asian children

BackgroundSouth 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.MethodsData 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.Results15 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.ConclusionsSeveral 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.