Race and ethnicity in UK public policy: education and health

No sooner do we mention 'race' than we are caught in a treacherous bind. To say 'race' seems to imply that 'race' is real; but it also means that differentiation by race is racist and unjustifiable on scientific, theoretical, moral, and political grounds. We find ourselves in a classic Nietzschean double bind: 'race' has been the history of an untruth, of an untruth that unfortunately is our history ... The challenge here is to generate, from such a past and a present, a future where race will have been put to rest forever. (Radhakrishnan, 1996 cited in Gunaratnam, 2003

Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school

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

Asthma management in British South Asian children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care

Abstract 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

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

A qualitative study of the impact of endometriosis on male partners

Open Access articleSTUDY QUESTION What is the impact of endometriosis on male partners of women with the condition? SUMMARY ANSWER Endometriosis significantly impacts men across several life domains and can negatively impact emotional well-being. WHAT IS KNOWN ALREADY Endometriosis has been shown to negatively impact women's quality of life and may strain intimate relationships. Little is known about the impact on male partners. STUDY DESIGN, SIZE, DURATION The ENDOPART study was a cross-sectional, qualitative study of 22 women with endometriosis and their male partners (n = 44) in the UK (2012–2013). PARTICIPANTS/MATERIALS, SETTING, METHODS Inclusion criteria: laparoscopic diagnosis of endometriosis; the presence of symptoms for at least a year; partners living together. Data were collected via face to face, semi structured interviews with partners interviewed separately. Data were analysed thematically, assisted by NVivo 10. MAIN RESULTS AND THE ROLE OF CHANCE Men reported that endometriosis affected many life domains including sex and intimacy, planning for and having children, working lives and household income. It also required them to take on additional support tasks and roles. Endometriosis also had an impact on men's emotions, with responses including helplessness, frustration, worry and anger. The absence of professional or wider societal recognition of the impact on male partners, and a lack of support available to men, results in male partners having a marginalized status in endometriosis care. LIMITATIONS REASONS FOR CAUTION Self-selection of participants may have resulted in a sample representing those with more severe symptoms. Couples included are in effect ‘survivors’ in relationship terms, therefore, findings may underestimate the contribution of endometriosis to relationship breakdown. WIDER IMPLICATIONS OF THE FINDINGS The study extends knowledge about the impact of endometriosis on relationships, which thus far has been drawn largely from studies with women, by providing new insights about how this condition affects male partners. Healthcare practitioners need to take a more couple-centred, biopsychosocial approach toward the treatment of endometriosis, inclusive of partners and relationship issues. The findings demonstrate a need for information and support resources aimed at partners and couples. STUDY FUNDING/COMPETING INTEREST(S) This study was funded by the Economic and Social Research Council (reference ES/J003662/1). The authors have no conflicts of interest

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

open access articleDespite 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 meaning

Cross-border-assisted reproduction: a qualitative account of UK travellers’ experiences

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

‘What are you going to do, confiscate their passports?’ Professional perspectives on cross-border reproductive travel

Objective: This article reports findings from a UK-based study which explored the phenomenon of overseas travel for fertility treatment. The first phase of this project aimed to explore how infertility clinicians and others professionally involved in fertility treatment understand the nature and consequences of cross-border reproductive travel. Background: There are indications that, for a variety of reasons, people from the UK are increasingly travelling across national borders to access assisted reproductive technologies. While research with patients is growing, little is known about how ‘fertility tourism’ is perceived by health professionals and others with a close association with infertility patients. Methods: Using an interpretivist approach, this exploratory research included focussed discussions with 20 people professionally knowledgeable about patients who had either been abroad or were considering having treatment outside the UK. Semi-structured interviews were recorded, transcribed verbatim and subjected to a thematic analysis. Results: Three conceptual categories are developed from the data: ‘the autonomous patient’; ‘cross-border travel as risk’, and ‘professional responsibilities in harm minimisation’. Professionals construct nuanced, complex and sometimes contradictory narratives of the ‘fertility traveller’, as vulnerable and knowledgeable; as engaged in risky behaviour and in its active minimisation. Conclusions: There is little support for the suggestion that states should seek to prevent cross-border treatment. Rather, an argument is made for less direct strategies to safeguard patient interests. Further research is required to assess the impact of professional views and actions on patient choices and patient experiences of treatment, before, during and after travelling abroad

Key considerations when involving children in health intervention design: reflections on working in partnership with South Asian children in the UK on a tailored Management and Intervention for Asthma (MIA) study

Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child’s needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the ‘evidence base’, making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children’s perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach