On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England.

The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person's disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The relational concepts of Anna Tsing (2015) - salvage accumulation, entanglement and precarity - were used as an analytical framework to assess the reported experiences. To understand the experiences of those with SCD and employment, it is necessary to apprehend the whole ecology of their bonds to their bodies; their social relationships of kin and family; and their wider social relations to communities. Paid employment breaks bonds crucial to those living with SCD. First, employers can only extract sufficient productive value from workers if they disregard the necessary self-care of a precarious body. Secondly, reproducing labour though child-care, housework and care work is a taken-for-granted salvage central to capitalism. Thirdly, voluntary and community work are salvaged for free by employers towards their accumulation of profits. People with SCD find bond-making activities that create the commons life-affirming, thereby reconfiguring our understanding of connections between disability and work. Tsing, AL (2015) The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins Princeton, NJ: Princeton University Press.

Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair.

Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of 'racialised' risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public health screening efforts. Using qualitative research based in the United Kingdom, we show how a focus on collective efforts of repair can lie in tension with how services and individuals understand and negotiate antenatal screening. We illustrate how screening for sickle cell disorder calls into question narrative identity, undoing paradigms in which ethnicity, disablement and genetic impairment become framed. Research participants noted that rather than 'choices', it is 'risks' and their negotiation that are a part of discourses of modernity and the new genetics. Furthermore, while biomedical paradigms are rationally and ethically (de)constructed by participants, this was never fully engaged with by professionals, contributing to overall perception of antenatal screening as disempowering and leading to disengagement.

Narrative as re-fusion: Making sense and value from sickle cell and thalassaemia trait.

The moral turn within sociology suggests that we need to be attentive to values and have a rapprochement with philosophy. The study of illness narratives is one area of sociology that has consistently addressed itself to moral domains but has tended to focus on stories of living with genetic or chronic illness per se rather than liminal states such as genetic traits. This article takes the case of genetic carriers within racialized minority groups, namely, those with sickle cell or thalassaemia trait, and takes seriously the notion that their narratives are ethical practices. In line with the work of Paul Ricoeur, such storied practices are found to link embodiment, social relationships with significant others and wider socio-cultural and socio-political relations. At the same time, such practices are about embodying values. These narratives may be considered as practices that re-fuse what genetic counselling has de-fused, in order to make sense of a life in its entirety and to strive ethically and collectively towards preferred social realities.

Living with sickle cell disease and depression in Lagos, Nigeria: A mixed methods study.

Sickle cell disorders (SCD) and depression are both chronic illnesses of global significance. Past research on SCD and depression struggles to make sense of statistical associations, essentializes depression within the person with SCD, and treats stigma as an automatic correlate of chronic illness. A mixed methods study (March 2012-April 2014) was undertaken with people living with SCD and depression in Lagos, Nigeria, examining depression-as disease (questionnaires); depression-as-illness-experience (individual depth interviews), and depression-as-societal-sickness (focus groups). 103 people with SCD attending an outpatients clinic were administered the Patient Health Questionnaire-9, and 82 self-identified with some level of depression. Fifteen were subsequently interviewed about their illness experience. Their lives were characterized by being extensively subjected to vicious discriminatory remarks, including from significant others, negative experiences they felt contributed to their depression and even to suicidal thoughts and actions. Contrary to misconceptions of the relational nature of stigma, respondents recognized that stigma resulted not from their SCD but from assumed broken social norms and expectations, norms to do with educability, employability and parenthood. They recounted either that they successfully met such expectations in their own lives, or that they could conceivably do so with reasonable societal adjustments. Ten respondents with SCD and depression further took part in two series of three focus groups with five people in each series of groups. In groups people living with SCD were able to challenge negative assumptions about themselves; to begin to recognize collective social interests as a group, and to rehearse backstage, in discussions between themselves, social actions that they might engage in frontstage, out in wider society, to challenge discriminatory societal arrangements they held to contribute to their depression. To the extent that depression in SCD has social origins, then social interventions, such as anti-discrimination laws and policies, are key resources in improving mental health.

'I can die today, I can die tomorrow': lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition.

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.

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.

Ethnicity questions and antenatal screening for sickle cell/thalassaemia [EQUANS] in England: a randomised controlled trial of two questionnaires.

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.

The feasibility of using ethnicity as a primary tool for antenatal selective screening for sickle cell disorders: pointers from the research evidence.

The Department of Health has announced a linked antenatal and neonatal screening programme for haemoglobinopathies by 2004 in a comprehensive national plan for the National Health Service in Britain. In response the National Screening Committee has commenced development work on how such a programme can best be implemented, including investigation of the effectiveness of a question about ethnic origin as a basis for selection. In addition, two recent health technology assessment reports have assessed alternative options for antenatal and neonatal haemoglobinopathy screening programmes in the United Kingdom. Both reports and commentators have emphasised the importance of developing a standardised instrument for collecting ethnicity data and recommended early development of such work. An examination of the evidence base on the use of ethnicity as a primary screening tool reveals substantial variability in practice and in the quality of data collected, with risk group misclassification as high as 20% against a recommended target of under 5.5%. The literature on the conceptual basis and structure of ethnicity questions, method of assignment in data collection, and level of resolution on categorisation is reviewed to identify the most appropriate content and format of a screening question for the haemoglobinopathies. Question options are evaluated, including the use of an extended 2001 Census classification and a 'non-North European' identifier and a candidate question based on 'family origins' is offered for debate. Finally, issues relating to the testing of the efficiency of an ethnicity question and the operationalising of its use for antenatal sickle cell screening are discussed.