Pacific families navigating responsiveness and children's sleep in Aotearoa New Zealand.

The stakes for understanding sleep practices are rising as health inequalities related to sleep become more apparent. Pacific peoples in Aotearoa New Zealand face disproportionate challenges around poverty and health and sleep is one growing area of importance in addressing health inequalities. Through a qualitative study of 17 Pacific families in Aotearoa New Zealand, we provide a rare and valuable glimpse into the familial, cultural, social and economic context of sleep for Pacific families and children in New Zealand. These Pacific families uphold a core value of responsiveness to family, community, culture and faith. These values feed wellbeing in a variety of ways, especially when health is considered through Pacific, holistic frameworks. These families apply the same responsiveness to economic pressures, often taking on shiftwork. We show how responsiveness to family and culture, as well as limited economic means, permeates sleep practices within these Pacific households. These broader shaping factors must be acknowledged, considered, respected and integrated into any healthy sleep initiatives and interventions, in order to ensure benefit - and not harm - is achieved.

Gendered caregiving and structural constraints: An empirical ethical study.

BACKGROUND: The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential. OBJECTIVES: To examine female members' lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences. RESEARCH DESIGN: This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry. PARTICIPANTS AND RESEARCH CONTEXT: This article focused on three cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China. ETHICAL CONSIDERATION: Approval was obtained from the university ethics committee. FINDINGS: The empirical work highlights caregivers' voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers. CONCLUSION: This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people.

Weiqu, structural injustice and caring for sick older people in rural Chinese families: An empirical ethical study.

This paper examines caregiving for sick older family members in the context of socio-economic transformations in rural China, combining empirical investigation with normative inquiry. The empirical part of this paper is based on a case study, taken from fieldwork in a rural Chinese hospital, of a son who took care of his hospitalized mother. This empirical study highlighted family members' weiqu (sense of unfairness)-a mental status from experiencing mistreatment and oppression in family care, yet with constrained power to explicitly protest or make care-related choices. Underpinning people's weiqu and constrained choice, as informed by the conception of structural injustice, is the impact of unjust social structures, organized by unfavourable norms, discriminatory social policies and institutions targeting rural populations. By restraining individual choices and capacities in supporting health care for aging populations, these unjust structures create additional difficulties for and discriminations against rural families and their older members. Some policy recommendations are proposed to mitigate structural injustice so as to empower families and promote care for older people in rural settings.

"Unworthy of Care and Treatment": Cultural Devaluation and Structural Constraints to Healthcare-Seeking for Older People in Rural China.

This paper examines the experiences of seeking healthcare for rural Chinese older people, a population who experiences the multiple threats of socio-economic deprivation, marginalization, and lack of access to medical care, yet have been relatively overlooked within the existing scholarly literature. Based on ethnographical data collected from six-month fieldwork conducted in a rural primary hospital in Southern China, this paper identifies a widespread discouraging, dispiriting attitude regarding healthcare-seeking for rural older members despite the ongoing efforts of institutional reforms with a particular focus on addressing access to health services amongst rural populations. Such an attitude was expressed by older people's families as well as the public in their narratives by devaluing older members' health care demands as "unworthy of care and treatment" ("buzhide zhi" in Chinese). It was also internalized by older people, based on which they deployed a family-oriented health-seeking model and strategically downgraded their expectation on receiving medical care. Moreover, underpinning this discouragement and devaluation, as well as making them culturally legitimate, is the social expectation of rural older people to be enduring and restrained with health-seeking. Simultaneously, this paper highlights the sourc2e of institutional and structural impediments, as they intersect with unfavorable socio-cultural values that normalize discouragement and devaluation.

Excluding indigenous bioethical concerns when regulating frozen embryo storage: An Aotearoa New Zealand case study.

This article undertakes a close reading of the parliamentary debates associated with the topic of embryo cryopreservation in Aotearoa New Zealand. From our critical readings, we argue that there is a lack of transparency over the ethical reasons for enforcing a maximum storage limit. We demonstrate that arguments for the retention of this limit are associated (in New Zealand) with arguments based upon 'build-up avoidance' and 'conflict avoidance' as social goods based on Pakeha [New Zealander of European descent] cultural world views rather than identifiable universal ethical principles. We illustrate that the avoidance of embryo accumulation and related conflict was only achieved by the denial of indigenous spiritual and cultural concerns, while also shifting the ethical burdens of disposition on to clinic staff and those members of the public who protested against enforced cryopreserved embryo disposal. The Pakeha cultural concept of 'tidy housekeeping' emerges as a presumed ethical and social good in the New Zealand situation. This is despite abundant literature documenting the suffering created through forced decision-making upon disposition.

Complete tooth loss as status passage.

The aim of this article is to add to the literature on the sociology of oral health and dentistry by presenting the relevance of status passage to the study of complete tooth loss. The article reports on an analysis of data taken from participants residing in the Nelson region of New Zealand. In total the data include interviews from 20 participants, all of whom had their remaining natural teeth removed before 1960. In total, 12 women and eight men were interviewed. All were from a European background with an age range of 71 to 101 years. Following a narrative approach, participants were interviewed on the nature of the social factors that resulted in complete tooth loss by starting with their family history and then focusing on the factors and events leading up to their total tooth loss. Data were analysed using the methods and techniques of grounded theory. This article provides an outline of the importance of scheduling, prescribing, social factors, 'compound awareness contexts' and reversibility to the status passage into complete tooth loss. We conclude by arguing that the theory of status passage may enable a detailed analysis of the 'time-space extensionality' of trajectories into complete tooth loss.

Connecting the East and the West, the Local and the Universal: The Methodological Elements of a Transcultural Approach to Bioethics.

From the outset, cross-cultural and transglobal bioethics has constituted a potent arena for a dynamic public discourse and academic debate alike. But prominent bioethical debates on such issues as the notion of common morality and a distinctive "Asian" bioethics in contrast to a "Western" one reveal some deeply rooted and still popular but seriously problematic methodological habits in approaching cultural differences, most notably, radically dichotomizing the East and the West, the local and the universal. In this paper, a "transcultural" approach to bioethics and cultural studies is proposed. It takes seriously the challenges offered by social sciences, anthropology in particular, towards the development of new methodologies for comparative and global bioethics. The key methodological elements of "transculturalism" include acknowledging the great internal plurality within every culture; highlighting the complexity of cultural differences; upholding the primacy of morality; incorporating a reflexive theory of social power; and promoting changes or progress towards shared and sometimes new moral values.

Valuing embryos as both commodities and singularities.

An argument put forward against gamete and embryo donation, sale and research, is that to do so would treat the gametes or embryos as objects with no intrinsic value as human. Instead, gametes and embryos created and used for donation, sale or research, can be considered more like a commodity created and traded for economic exchange--something that is valuable only for the amount of money or other goods and services that others are willing to exchange. While Kant asserts that humans have dignity rather than object worth, the provision of human gametes and embryos are progressively becoming utilities for resolving childlessness and for certain research investigations. In this paper we discuss the commodity market and the relationship to human reproduction material.

Choice, Rights, and Virtue: Prenatal Testing and Styles of Moral Reasoning in Aotearoa/New Zealand.

Using a Foucauldian biopower analytic, this article combines insights from several ethnographic research projects around the moral reasoning styles underpinning debates over selective reproductive technologies in Aotearoa/New Zealand. We show that divergent or shared public, private, state, individual, and community moral reasoning styles become highly politicized truth discourses that have the potential to, and at times do, affect one another, modifying a dominant, state-supported, principal-based bioethics framework. The styles of moral reasoning that we identify pivot on an aspirational cultural ideal of the provision of choice to citizens, which is taken as an appropriate position from which to regulate selective reproductive technologies.

Ethics of mitochondrial therapy for deafness.

Mitochondrial therapy may provide the relief to many families with inherited mitochondrial diseases. However, it also has the potential for use in non-fatal disorders such as inherited mitochondrial deafness, providing an option for correction of the deafness using assisted reproductive technology. In this paper we discuss the potential for use in correcting mitochondrial deafness and consider some of the issues for the deaf community.

Numerical identity: the creation of tri-parental embryos to correct inherited mitochondrial disease.

Inherited mitochondrial disorders affect between 1 in 5000 to 1 in 8000 people. These are a heterogeneous group of maternally-inherited disorders, with an array of outcomes such as heart and liver failure, defects in energy metabolism, blindness, deafness, loss of motor skills and premature death. Recently the Human Fertilisation and Embryology Authority provided advice to the UK Government to permit the use of enucleated donated oocytes with normal (wild-type) mitochondria (a currently prohibited IVF technique) to be used as recipients of nuclear DNA from intending mothers to overcome transmission of mitochondrial disorders. In this short communication we present the basis for this radical new IVF technology, and discuss the implications for its use both in the context of treating a group of inherited disorders and the current New Zealand IVF legislation.

The embodied liminalities of occupational overuse syndrome: Medical anthropology quarterly.

Drawing on interviews with sufferers of OOS (occupational overuse syndrome) in Aoteraoa/New Zealand, this article explores the liminalities associated with OOS and the ways in which this liminality is embodied. While successful rehabilitation could lead back to employment, the respondents' fragility while living with OOS and its accompanying social stigma render such rehabilitation both literally and symbolically "out of reach". Their situations reveal social isolation, loss of identities, pain, and functional disability that have been incorporated into renegotiated identities and biographies in which respondents have become exquisitely self-absorbed, exercising constant bodily surveillance and discipline in order to manage their symptoms. We suggest that this problematic extends beyond biographical disruption to encompass the concept of injury to an embodied sense of integrity for people who were notable prior to their affliction for their reputations as extremely competent and conscientious workers. The embodied meaning of OOS in this environment is not so much to have fallen "out of culture" as Hilbert (Ewan et al. 1991) suggests, but to be liminal in Turner's sense of "threshold people" (Turner 1969:56) "ground down to a uniform condition to be fashioned anew."

Occupational overuse syndrome: moral ambiguities of New Zealand health professionals.

In this article we examine the moral ambiguities expressed by New Zealand health professionals regarding their clients and patients who have occupational overuse syndrome (OOS). Workers with OOS were described as being hard working and dedicated, but also undisciplined in their work and personal lives. The goal of rehabilitation in such cases is a return to full work duties and to this end, health professionals represent the disciplinary and normalizing technologies of the neoliberal state which, in New Zealand, provides financial support and treatment for injured workers. According to the health professionals in this study, the disciplinary technologies exercised through rehabilitation require that clients and patients internalize key values associated with the rhetoric of healthism; primarily self-discipline, self-control, self-denial, and willpower. These underpin successful rehabilitation and ongoing management of OOS, and at the same time represent the central values of the neoliberal capitalist workplace.

Embodying occupational overuse syndrome.

This article explores the ways in which embodiedness has become problematic for New Zealand sufferers of occupational overuse syndrome (OOS). While successful rehabilitation could lead back to employment, this was based on the biographical continuity of a bodily hexus that ignored persistent pain. The reality of OOS involved a liminal fragility associated with social isolation, loss of identities, pain and functional disability that was incorporated into re-negotiated identities and biographies with the result that respondents became exquisitely self-absorbed, exercising constant bodily surveillance and discipline in order to manage their symptoms.

'Going-to-have-cancerness': a study of living with increased risk of BRCA1 and BRCA2 mutations for six South Island women.

INTRODUCTION: Mutations in the BRCA (breast cancer) 1 and 2 genes are thought to lead to 5-10% of breast cancers. AIM: A qualitative study to explore six New Zealand women's experiences of living with increased risk for a genetic susceptibility to breast cancer. METHODS: Six women were interviewed using semi-structured interviews, to explore their experiences of living at high risk for developing breast cancer due to familial and/or individual genetic susceptibilities. Results were analysed using thematic coding. After a three-year interval, interviewees were contacted again to discuss their experiences (although two were lost to follow-up). FINDINGS: The women held fatalistic views on developing cancer and drew on family experience as much as biomedical research to assess their situation. They became increasingly immersed in biomedical screening and prophylaxis without accompanying improvement to their peace of mind and with unrealistic ideas of it 'preventing' cancer. The biomedical management options and advice they reported receiving was factually inconsistent and a discrepancy emerged between women's expectations of breast cancer health services (including genetic testing) and the delivered support and services. CONCLUSION: This small sample group cannot be used to draw implications on the views of the wider group of higher risk patients, but for these six women, genetic testing, screening and prophylaxis have not provided peace of mind; rather the reverse has occurred. The findings are provocative as they challenge the biomedical idea of patients' experience of managing their genetic risk information as routinely positive.

The lived political economy of occupational overuse syndrome among New Zealand workers.

In New Zealand, as in other industrialised nations, rates of work-related gradual onset injuries increased during the 1980s and 1990s. The perspectives and experiences of workers suffering what became known as occupational overuse injuries in New Zealand offer insights into local lived political economies. Here, we explore the dominant metaphor, 'battling', in participants' narratives. On the face of it, battles were fought over diagnoses, over occupational health and safety in the workplace, and over entitlements to therapy and income compensation. However, participants were also battling to maintain their identities as hard workers, while resisting and challenging normalising technologies of self and morally charged negative identities offered them by employers, state-funded accident and injury insurance agencies, and the medical profession. Inherent in their narratives is a critique of the neo-liberal capitalist political economy that allows workers' bodies to be exploited (and sacrificed) for employers' profits.

Understanding the 'epidemic' of complete tooth loss among older New Zealanders.

OBJECTIVE: The aim of this study was to obtain a deeper understanding of the social factors driving New Zealand's historic 'epidemic of edentulism' and how they operated. METHOD: In-depth, semi-structured interviews with 31 older New Zealanders were analysed using applied grounded theory. RESULTS: Universal factors present in the data were: (a) the way in which New Zealand society accepted and indeed encouraged edentulism without stigma for those who had a 'sub-optimal' natural dentition; (b) how the predominant patterns of dental care utilisation (symptomatic and extraction-based) were often strongly influenced by economic and social disadvantage; and (c) the way in which lay and professional worldviews relating to 'calcium theory' and dental caries were fundamental in decisions relating to the transition to edentulism. Major influences were rural isolation, the importance of professional authority and how patient-initiated transitions to edentulism were ultimately facilitated by an accommodating profession. CONCLUSION: The combined effects of geography, economics, the dental care system and the professional culture of the day, in the context of contemporary (flawed) understandings of oral disease, appear to have been the key drivers. These were supported (in turn) by a widespread acceptance by the profession and society alike of the extraction/denture philosophy in dealing with oral disease.

An alternative consideration in drug testing in elite athletes.

As vigilance increases for drug abuse in sport there is an increasing awareness of new technologies creating new possibilities of performance enhancement. One such example is the recent consideration of 'gene doping', which may enhance athletic performance. In this article we consider an alternative strategy not yet considered; the potential for a pharmacogenomics approach and the utility of information at the level of the protein rather than the gene.

Rural nurse specialists: clinical practice and the politics of care.

Doctor flight from rural areas is an international phenomenon that places great pressure on primary health care delivery. In New Zealand, the response to these empty doctors' surgeries has been the introduction of nurse-led rural health clinics that have attracted controversy both in the media and from urban-based doctors over whether such nurse-led care is a direct substitution of medical care. This article analyzes the reflections of nurses working in some of these clinics who suggest that their situation is more complex than a direct substitution of labor. Although the nurses indicate some significant pressures moving them closer to the work of doctoring, they actively police this cross-boundary work and labor simultaneously to shore up their nursing identities. My own conclusions support their assertions. I argue that it is the maintenance of a holistic professional habitus that best secures their professional identity as nurses while they undertake the cross-boundary tasks of primary rural health care. There are clear professional benefits and disadvantages for the nurses in these situations, which make the positions highly politicized. These recurring divisions of labor within medical care giving and the elaboration of new types of care worker form an appropriate although neglected topic of study for anthropologists. The study of the social organization of clinical medicine is much enriched by paying closer attention to its interaction with allied health professions and their associated understandings of "good" care.