The impact of ageing on adults with cerebral palsy: the results of a national online survey.

BACKGROUND: Cerebral palsy (CP) is one of the most common neurological disorders in children and results in lifelong physical impairments. Adults with CP have approximately the same life expectancy as their non-disabled peers, so helping them to stay healthy throughout the life course will have long-term cost benefits via reductions in hospital admissions, long-term care, and unemployment rates. AIM: To explore how adults with CP experience ageing. DESIGN & SETTING: National online survey given to adults with CP in the UK. METHOD: The participants were adults with CP. Items for the online survey were taken from existing self-report measures, with additional items developed for the survey. Several domains of functioning were assessed including mobility, dexterity, fatigue, pain, speech, mental health, swallowing and health maintenance/self-care as well as healthcare usage. Data were analysed using χ2 to examine the relationships between the demographic variables and the survey responses. RESULTS: The survey was completed by 395 participants, of whom 74.2% were female and approximately 59.3% aged <45 years. Responders reported having problems with mobility, pain, and fatigue with older participants reporting higher levels of pain and more mobility problems, although the correlations were fairly small. Healthcare usage was surprisingly low. CONCLUSION: The study found that age was associated with a decline in mobility and a higher level of pain, although the relationships were weak. It is possible that the low healthcare usage among the responders is owing to services not being available to respond to their needs.

Exploring the significance of relationality, care and governmentality in families, for understanding women's classed alcohol drinking practices.

In this paper we explore the importance of relationality and care for understanding women's alcohol use, using a theoretical framework comprising concepts from feminist ethics of care, the sociology of personal life, and feminist approaches to governmentality. A key focus is how care giving responsibilities and expectations in families appear to be particularly significant for creating or constraining possibilities for drinking practices. We draw on findings from a qualitative study about alcohol use and stress with 26 women, aged 24-67 years, in the North East of England, UK. We consider how care practices in families feature in the accounts of alcohol use by women with and without children, and how the symbolic and material aspects of social class interact with care to alter the drinking practices women engage in. The interpretation extends scholarship on women's drinking, by adopting a relational approach to identity and linking private care practices and alcohol use to social and political structures. Public health approaches for preventing or reducing heavy drinking practices are predominantly situated within biomedical or psychological paradigms. Intervention approaches to reduce women's drinking that draw on our theoretical framework could offer potential for reducing harmful alcohol use in a more meaningful way.

Understanding alcohol as an element of 'care practices' in adult White British women's everyday personal relationships: a qualitative study.

BACKGROUND: In the last thirty years there has been a rise in harmful alcohol use amongst White British women. Approaches to alcohol harm reduction typically position drinking as an individual behaviour, with an emphasis on people to make changes to and by themselves. Moving away from an individual approach, this paper works with a relational framework to develop understanding of non-dependent women's drinking in the context of their everyday lives. It draws on Feminist Ethics of Care theory, to consider the importance of care in women's lives and alcohol as an element of their 'practices of care' in different relationships. METHODS: The study adopted an interpretive approach and drew on feminist principles of practice. Qualitative one-to-one face-to-face interviews were undertaken with twenty-six White women living in the North East of England. Participants were aged between 24 and 67 years. Thematic analysis of the data was carried out. RESULTS: Participants' relationships came through the analysis as central to understanding the way alcohol did and not feature in care practices. In couple relationships drinking offered a way of doing 'care' together, yet when it was used too often it no longer became appropriate as a form of care. In non-family relationships alcohol enabled care giving and receiving, while disguising that care was being received. In relationships with mothers the use of alcohol was relatively absent in the care practices described. Participants' relationship to alcohol as a form of care of self, particularly when drinking alone, was closely related to their roles and responsibilities to others. CONCLUSIONS: Overall the data suggests that interventions targeting women's drinking should start from a position that women are relational. Moreover that when care by others is lacking or unavailable, alcohol can increasingly be introduced into care practices, and the reproduction of these practices may be leading to an increase in heavy drinking. By seeing alcohol use in the context of wider familial and non-familial relationships, this work has important implications for future interventions.

The medical reshaping of disabled bodies as a response to stigma and a route to normality.

Disabled people are said to experience stigma because their embodied presence in the world does not fit with how others interact and use their bodies to be social participants. In response they can turn to medical procedures, such as surgery or physiotherapy, in order to reshape their bodies to more closely approximate norms of social interaction and embodiment. This paper explores how medicine plays a role in attempts to be recognised by others as normal and acceptable by minimising disability. It will do so via a focus on disabled young people, in order to explore how their emerging identities and aspirations for the future influence how they think about their bodies, what normality means and their participation in multiple activities that work on their bodies. The paper draws from an Economic and Social Research Council (ESRC) project that used a range of qualitative research methods with a group of disabled young people. The project explored ways in which participants actively worked on their bodies to be more normal and examined the disciplinary and agency dynamics involved in this work.

Where families and healthcare meet.

Recent developments in professional healthcare pose moral problems that standard bioethics cannot even identify as problems, but that are fully visible when redefined as problems in the ethics of families. Here, we add to the growing body of work that began in the 1990 s by demonstrating the need for a distinctive ethics of families. First, we discuss what 'family' means and why families can matter so deeply to the lives of those within them. Then, we briefly sketch how, according to an ethics of families, responsibilities must be negotiated against the backdrop of family relationships, treatment decisions must be made in the light of these negotiated responsibilities and justice must be served, both between families and society more generally and within families themselves.

The unfinished body: the medical and social reshaping of disabled young bodies.

Stories about disability are heavily shaped by the narratives offered by medicine and society. Those narratives enact an 'anomalous' body that is constructed as distant from the norm and therefore 'damaged' but also fixable. In this paper we explore how such narratives, and the practices they encompass, influence the stories disabled young people tell about their bodies and impairment. We do so by drawing on narrative qualitative interviews and visual practices carried out with seventeen disabled young people in a project funded by the Economic and Social Research Council that took place between 2011 and 2012 in the North East of England. The findings discussed here focus on how medical and societal responses to bodily difference become part of the stories disabled young people tell about their bodies, and influence the way they work with the body as something which remains 'unfinished' and therefore both fixable and flawed. Our conclusion is that a narrative of an unfinished body is produced, as young people manage their bodies as something that is integral to their emerging identity, but also as a potential threat that could undermine and give away their labour in making an 'ordinary' functioning body and life. The paper contributes to medical sociology and sociology of the body by producing new knowledge about how disabled embodiment is lived and framed by disabled young people in the context of ongoing attempts to change the body.

Visualising difference, similarity and belonging in paediatric genetics.

Paediatric genetics is increasingly playing a role in explorations of why a child may not be reaching developmental milestones, while experiencing various health concerns and displaying unusual physical characteristics. The diagnostic processes include close analyses of a child's body in order to identify 'clues' to possible genetic variation. When the genetic variation identified is new and complex there is significant uncertainty about what relationship that variation has to childhood development and what it will mean for a child's future. This paper, drawing from an ethnographic study of a genetics clinic, explores what versions of childhood difference and normality are produced by genetic explorations marked by uncertainty. The focus is on the significance of visual dynamics within the consultation, in family stories or photographs, and in the images found on websites which catalogue genetic syndromes. Our argument is that inside and outside the clinic the visual interpretations create understandings of the child that at times position him or her as 'other', while at other times recognise the child as normal and 'one of us'. The uncertainty embedded in identifying rare genetic variations enables multiple interpretations to emerge which do not 'fix' the child into the category of the 'genetically other'.

Crossing multidisciplinary divides: exploring professional hierarchies and boundaries in focus groups.

Focus groups are an important element of qualitative health research, valued for the forms of knowledge and understanding that emerge from interactions among participants. Common advice for focus groups within health research is to limit the level of variation among respondents to generate comprehensive discussion and shared knowledge. In this article, the authors critically examine this advice, proposing instead that it is useful to acknowledge and, at times, consciously build in heterogeneity across categories of those present. The benefit of doing this is that the interaction thus generated can be used as a space within which to explore differing professional positions and interpretations of issues under discussion. Using research they have done, they explore the practical issues involved in getting different health and social care professionals together and go on to discuss the value and significance of using focus groups to explore the production of professional hierarchies and boundaries.

Hereditary angioedema managed with low-dose danazol and C1 esterase inhibitor concentrate: a case report.

BACKGROUND: Hereditary angioedema (HAE) is a rare life-threatening disease that can occur in pregnancy. CASE: A nulliparous woman was diagnosed as having HAE at 22 weeks of gestation after a series of symptomatic episodes. Following an initial course of C1 esterase inhibitor (C1EI) therapy for an acute episode of HAE, she was treated with danazol for prophylaxis. Danazol did not prevent recurrence of symptoms, its use was discontinued after six weeks. Thereafter, the patient was treated exclusively with C1EI at weekly intervals for exacerbations of her HAE. At 37 weeks' gestation, she delivered healthy 3050 g female neonate. At the time of discharge the female neonate had no signs of virilization or congenital anomalies. CONCLUSION: Low dose danazol was ineffective in treating this woman's HAE in pregnancy. The use of C1EI in pregnancy is associated with good outcomes.

Risky professional boundaries. Articulations of the personal self by antenatal screening professionals.

This paper examines the role of various boundaries in giving both professional groups and individuals a sense of identity that provides both with status and legitimacy. Close attention is paid to the boundaries between personal and professional identities and values. Sociologists working with a discursive approach argue that professional identity and status are achieved through the rhetorical presentation of certain values and responsibilities as personal, and therefore outside the boundaries of professional practice. This paper takes this argument forward, by arguing that in particular contexts, certain kinds of values are consciously articulated as personal and incorporated into the defence of professional legitimacy. Bringing personal claims inside professional boundaries is further evidence of the fluid and negotiated quality of the boundary between personal and professional values and notions of self. The paper consists of a discussion of the construction of professional boundaries, professional involvement in risk, issues raised by antenatal screening and analysis of a study of a group of professionals involved in antenatal screening. The paper explores the circumstances within which even senior professional groups and individuals look to representations of the personal self as a defence against critiques of their professional practice. Where the risks that professionals generate and interpret are medically ambiguous and socially contentious the abstract professional and medical framework is insufficient and other rhetorical values become resources in securing the professional role.