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The relationship of parents and infants is ruptured at birth in the context of urgent issues such as congenital heart defects. The infants referred to in 10 semi-structured interviews had undergone cardiac surgery in a children's hospital in Australia and were participating in a new programme known as Heart Beads instigated by the cardiac ward nurses. Within the biomedical context infants are often alienated from their parents and treated as isolated bodies. The paper discusses the social implications of an ill or deformed child and the role of narrative in addressing social demands and the problems faced by parents in infant intensive care contexts. It is argued that theorising the infant within a relational framework allows agency to be attributed to the infant and parents while also recognising the importance of the intimate social world and interactional context that it is expressed within. The paper draws on Nick Crossley's relational sociology to highlight the importance of the relational embodiment that encompasses infants within a social world preceding them and enveloping them. The narrative is developed by parents in order to facilitate the social expression and integration of their child and thus plays a particularly social role in the context of infant surgery, rather than serving to adjust the individual to new circumstances. Exploring the role of narrative in this social relational sense is important for bringing the mother and the family back into the context and survival of the infant both physically and socially. [ABSTRACT FROM AUTHOR]

This study examines experiences of living with chronic illness for haemodialysis patients. In order to understand these experiences the paper takes an existential-phenomenological approach. Interviews of seven participants (five males, two females) were collected in a haemodialysis clinic. Based upon the participants experiences three core themes emerged: (1) the challenges of living with chronic renal failure; (2) body changes and embodiment; (3) their illness experience and social relationships. The findings suggest that the illness experience of chronic renal failure is an on-going struggle to attain a sense of control. We suggest that where a sense of control is limited this can create a sense of powerlessness. Further, the illness experience was not solely restricted to the individual, but also affected wider social relationships. It is only through taking into account the context of patients experience of illness that clinicians/nurses can meaningfully draw on all aspects of evidence to reach integrated clinical judgement. [ABSTRACT FROM AUTHOR]

Australia is rapidly becoming home to an increasing number of Polynesians. While the Maori/Pacific Islander 'economic migrant' may appear fit and healthy, statistically the incidence of diabetes, hypertension and cardiovascular disease is extremely high. When this profile is coupled with family reunion migration of older relatives who are living longer, it represents an escalation of current and future outlay for Australian health services. Qualitative semi-structured interviews were conducted with 67 Polynesian migrants in regard to their perceptions of health and illness, and their experience of health services in Sydney and the Hunter region of New South Wales. Three key respondents, all Polynesian nurses practising in Australia, were also interviewed. The findings indicate a concentration of disadvantage concerning educational achievement, skill levels and health literacy that reinforce the process whereby social disadvantage impacts on health outcomes. This study also reveals a nexus of issues around cultural behaviours and poverty that contribute to the incidence of obesity-related illness and limit compliance with recommended preventative measures and treatments. This paper includes a discussion of the socio-political context of health delivery to Maori and Pacific Islander migrants and how the contraction of services under neoliberal 'belt tightening' undermines potential capacity to treat culturally and linguistically diverse (CALD) populations effectively. As Australian scholarship has traditionally concentrated on Melanesia, there is very little research on Polynesians who are one of our burgeoning migrant groups. This study therefore makes a timely contribution to redressing the lack of literature on Polynesian health, cultural practices and socio-economic positioning in this country. [ABSTRACT FROM AUTHOR]

This paper explores how the structuring of places and time influence Aboriginal and Torres Strait Islander patient and carer experiences of health services. Face-to-face in-depth interviews were conducted with urban Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease as well as family carers (N = 19). Content analysis was undertaken. Participants report that each element of the time spent in Aboriginal Medical Services is seen as more valuable and worthwhile than in mainstream health services, from social and health sharing experiences in the waiting room to health care in clinical places; and that users feel they can rely on sufficient time and respectful care in their clinical consultation. Purposeful design of both physical and temporal aspects of health services is called for. We suggest re-introducing opportunities for spatiotemporal design in health care that have been limited by the segmented 'person as illness' design features of Australia's current mainstream health system. [ABSTRACT FROM AUTHOR]

This article draws upon research involving in-depth interviews with 60 mothers of young children about the home healthcare in which they engage when promoting their children's health and dealing with their illnesses, allergies or developmental problems. The study found that a series of often interconnected discourses were evident in the women's accounts. These included the discourses of health states as controllable, good health as an outcome of good management and the child's body as vulnerable. Other discourses were related to the concept of the 'good mother'. The interviewees also employed the discourses of home healthcare as emotionally distressing and as hard work and of children's illness as a mother's loss of control. As this suggests, such caring was often an intensely embodied and negative emotional experience for the mothers, particularly if they felt as if they had lost control over their children's bodies. [ABSTRACT FROM AUTHOR]

In this article we discuss the 'bringing our dying home' research project which contributes to an understanding of caring at end of life (EOL) as potentially increasing social networks and community capacity. The main aims of the research were to illuminate the quality and effect of informal caring networks that are established, or strengthened, as a result of caring for a person dying at home and to understand how being involved in such a caring network impacts family, friends and the wider community. Using photo voice and network mapping in focus groups and interviews we collected 94 visual and oral narratives of caring and support. We found: people who engaged in acts of resistance to the Western expert-based approach to EOL care; that carers successfully mobilised and negotiated complex webs of relationships; and, that embodied learning about caring contributed to the development of social capital and compassionate communities. [ABSTRACT FROM AUTHOR]

Hepatitis C (HCV) is a disease of the liver with a range of potentially debilitating symptoms, the severity of which differ from person to person. HCV is a major public health challenge. Globally an estimated one in 12 persons is affected by the virus, and substantial new transmissions occur each year. The vast majority of new transmissions occur among people who inject drugs, particularly through practices such as sharing of needles, syringes and other injecting equipment. Behavioural surveillance data suggest that the majority of equipment sharing occurs between intimate partners. Despite this, very little research has focussed on intimate partnerships as a site of hepatitis C transmission or prevention. This is in part because people who inject drugs are conventionally represented as lacking capacity for romantic love and intimacy; also, drug 'addiction' is produced as the antithesis of voluntarity, autonomy and authenticity, all of which feature strongly in Western understandings of romantic love. This study aims to fill existing gaps in the literature about the relationship between romantic love and injecting drug use (IDU) and to explore injecting drug practices among partners in intimate relationships. Fifteen people who inject drugs, currently in long-term heterosexual relationships, were recruited for in-depth interviews, which were recorded, transcribed verbatim and analysed thematically. The main findings of this study are that romantic love and intimacy figure prominently in the lives of people who inject drugs, and that romantic notions such as commitment, trust, care and support shape how individuals who inject drugs talk about serostatus with their partners and how they account for injecting practices. Moreover, injecting practices are co-produced within intimate relationships, shaped by perceptions of risk within and outside the relationship, ideas of intimacy, and the specific levels of skill and expertise within these relationships. These findings have important implications for harm reduction strategies, which, we suggest, have largely failed to take into account the intimate relationship as a source of practice. We conclude with suggestions for future work in this area. [ABSTRACT FROM AUTHOR]

Autism spectrum disorders (ASDs) present particular problems for diagnosis, encompassing as they do communication difficulties, learning difficulties, social awkwardness, and severe disability, as well as some strengths and special skills (such as perfect pitch or artistic abilities). Hence ASDs have proven difficult to standardise, and evidence-based medicine (EBM) advocates deplore the absence of clean randomised control trial data for different approaches. This study explores the extent to which the drive for standardisation and statistical approaches to clinical medicine influence the ways paediatricians diagnose and treat ASDs. To this end, we interviewed nine paediatricians in private practice using a face-to-face, semi-structured approach. Three primary themes emerged from the interview data. First the essentially tacit, experiential nature of diagnosing autism, second the necessity of tinkering with and adapting existing diagnostic tools to particular patients and circumstances, and third, the influence of social constraints on the clinical encounter. This study demonstrates that the process of diagnosis and treatment recommendation involves constant negotiation between clinical experience, the evidence, and the family's social situation. Furthermore, we find that statistical and EBM approaches are used most often at the margins of the clinical encounter to diagnose outlier patients, rather than the typical patient these approaches claim to describe. [ABSTRACT FROM AUTHOR]