Emotional interactions and an ethic of care: caring relations in families affected by HIV and AIDS

In the context of global processes of economic restructuring, the HIV and AIDS epidemic and socio-cultural constructions of care, many women and young people in low-income households have been drawn into caring roles within the family. Drawing on the literature on an ethics of care, emotional geographies and embodiment, this paper examines the emotional dynamics of the caring process in families affected by HIV and AIDS. Based on the perspectives of both ‘caregivers’ and ‘care-receivers’ from research undertaken in Namibia, Tanzania and the UK, we examine the everyday practices of care that women and young people are engaged in and explore how emotions are performed and managed in caring relationships. Our research suggests caregivers play a crucial role in providing emotional support and reassurance to people with HIV, which in turn often affects caregivers' emotional and physical wellbeing. Within environments where emotional expression is restricted and HIV is heavily stigmatised, caregivers and care-receivers seek to regulate their emotions in order to protect family members from the emotional impacts of a chronic, life-limiting illness. However, whilst caregiving and receiving may lead to close emotional connections and a high level of responsiveness, the intensity of intimate caring relationships, isolation and lack of access to adequate resources can cause tensions and contradictory feelings that may be difficult to manage. These conflicts can severely constrain carers' ability to provide the ‘good care’ that integrates the key ethical phases in Tronto's (1993) ideal of the caring process.

Voices from the aid 'chain': The personal dynamics of care

This paper uses a simplified model of the aid 'chain' to explore some causes and consequences of breakdown in communication. Although the rhetoric of Northern-based donors is awash with words such as 'partnership' and 'inclusion' when dealing with their Southern-based partners, the situation in practice is different. Unequal power relationships sometimes result in donor imposition of Perspectives and values. It is our contention, based on a collective experience of fifty-four years in a Nigerian-based non-governmental development organization (NGDO), the Diocesan Development Services (DDS), that much of the driving force behind the successes and problems faced by the institution was founded on relationships that evolved between individuals. In order to understand why things happened the way they did it is necessary to begin with the human element that cannot be condensed into objects or categories. While injudicious donor interference bad damaging repercussions, our experience suggests that care and consideration flow throughout the aid chain and actions are not malevolent. Breakdowns can be attributed to a number of factors, with the over-riding one being pressures operating at the personal level that emanate from within the institution itself and the larger community. The paper analyses three experiences using institutional ethnography theory and methodologies as a basis. Examples taken address the influence key donor personnel had in the function of DDS, and how these changed with time. The mission, policies and even procedures of the donor did not change markedly over thirty-two years, but each changing desk officer had their own philosophy and approach and a different interpretation of their own institutional policies. Hence while the 'macro' has an influence it is mediated via individual interpretation. In our view, the importance of people-people relationships is particularly understated in development literature where emphasis gravitates towards the aggregate and global.

Metalloestrogens: an emerging class of inorganic xenoestrogens with potential to add to the oestrogenic burden of the human breast

Many compounds in the environment have been shown capable of binding to cellular oestrogen receptors and then mimicking the actions of physiological oestrogens. The widespread origin and diversity in chemical structure of these environmental oestrogens is extensive but to date such compounds have been organic and in particular phenolic or carbon ring structures of varying structural complexity. Recent reports of the ability of certain metal ions to also bind to oestrogen receptors and to give rise to oestrogen agonist responses in vitro and in vivo has resulted in the realisation that environmental oestrogens can also be inorganic and such xenoestrogens have been termed metalloestrogens. This report highlights studies which show metalloestrogens to include aluminium, antimony, arsenite, barium, cadmium, chromium (Cr(II)), cobalt, copper, lead, mercury, nickel, selenite, tin and vanadate. The potential for these metal ions to add to the burden of aberrant oestrogen signalling within the human breast is discussed. Copyright (c) 2006 John Wiley & Sons, Ltd.

Excess burden of constipation in Parkinson's disease: A pilot study

An analysis was undertaken of clinic-based questionnaires that asked people with Parkinson's disease and a control group of older people without a known neurological condition about their experiences of constipation. People with Parkinson's disease report higher constipation on a validated objective measure, the Rome criterion (59% vs. 20.9%); a behavioral indicator, laxative-taking (38.4% vs. 14.2%); and subjective self-report of being always or often concerned by it (33.4% vs. 6.1%). Many people with Parkinson's disease experience constipation problems but they may not bring these to the attention of their healthcare providers. More research is required to understand the causes and management options. (C) 2006 Movement Disorder Society.

Social networks, migration, and care in Tanzania

This paper explores the impacts of the HIV/AIDS epidemic on children and families in northern Tanzania using the concept of social resilience.1 The study is based on the findings of childfocused research with street children and children and families from HIV/AIDS-affected households. The paper illustrates the coping strategies that children and young people, and parents and caregivers adopt at the household level. In particular, it examines how the burden of care affects different generations of women and highlights their resilience, together with the importance of social networks and the fluidity of movement between rural and urban areas. The research suggests that migrating to urban areas to seek a living in the informal sector represents a survival strategy adopted by some children and young people orphaned by AIDS when their families and communities are unable or unwilling to support them. The paper concludes by exploring parents’, caregivers’, children’s, and young people’s views on the forms of social support that would promote their resilience and thereby help to mitigate the impacts of the epidemic at the household level.

Continuity of care for people with psychotic illness: its relationship to clinical and social functioning.

Background: The relationship between continuity of care and user characteristics or outcomes has rarely been explored. The ECHO study operationalized and tested a multi-axial definition of continuity of care, producing a seven-factor model used here. Aims: To assess the relationship between user characteristics and established components of continuity of care, and the impact of continuity on clinical and social functioning. Methods: The sample comprised 180 community mental health team users with psychotic disorders who were interviewed at three annual time-points, to assess their experiences of continuity of care and clinical and social functioning. Scores on seven continuity factors were tested for association with user-level variables. Results: Improvement in quality of life was associated with better Experience & Relationship continuity scores (better user-rated continuity and therapeutic relationship) and with lower Meeting Needs continuity factor scores. Higher Meeting Needs scores were associated with a decrease in symptoms. Conclusion: Continuity is a dynamic process, influenced significantly by care structures and organizational change.

Continuity of care for carers of people with severe mental illness: results of a longitudinal study

Introduction: Continuity of care has been demonstrated to be important for service users and carer groups have voiced major concerns over disruptions of care. We aimed to assess the experienced continuity of care in carers of patients with both psychotic and non-psychotic disorders and explore its association with carer characteristics and psychological well-being. Methods: Friends and relatives caring for two groups of service users in the care of community mental health teams (CMHTs), 69 with psychotic and 38 with non-psychotic disorders, were assessed annually at three and two time points, respectively. CONTINUES, a measure specifically designed to assess continuity of care for carers themselves, was utilized along with assessments of psychological well-being and caregiving. Results: One hundred and seven carers participated. They reported moderately low continuity of care. Only 22 had had a carer’s assessment and just under a third recorded psychological distress on the GHQ. For those caring for people with psychotic disorders, reported continuity was higher if the carer was male, employed, lived with the user and had had a carer’s assessment; for those caring for people with non-psychotic disorders, it was higher if the carer was from the service user’s immediate family, lived with them and had had a carer’s assessment. Conclusion: The vast majority of the carers had not had a carer’s assessment provided by the CMHT despite this being a clear national priority and being an intervention with obvious potential to increase carers’ reported low levels of continuity of care. Improving continuity of contact with carers may have an important part to play in the overall improvement of care in this patient group and deserves greater attention.

Ethics of care in supporting disabled forced migrants: interactions with professionals and ethical dilemmas in health and social care in the South-East of England

This article explores the interactions between disabled forced migrants with care needs and professionals and the restrictive legal, policy and practice context that health and social care professionals have to confront, based on the findings of a qualitative study with 45 participants in the South-East of England. In-depth interviews were conducted with 15 forced migrants who had diverse impairments and chronic illnesses (8 women and 7 men), 13 family caregivers and 17 support workers and strategic professionals working in social care and the third sector in Slough, Reading and London. The legal status of forced migrants significantly affects their entitlements to health and social care provision, resulting in prolonged periods of destitution for many families. National asylum support policies, difficult working relationships with UK Border Agency, higher eligibility thresholds and reduced social care budgets of local authorities were identified as significant barriers in responding to the support needs of disabled forced migrants and family caregivers. In this context, social workers experienced considerable ethical dilemmas. The research raises profound questions about the potential and limitations of health and social care policies, provision, and practice as means of protection and support in fulfilling the human rights of forced migrants with care needs.

Enchanting resilience: relations of care and people-place connections in agriculture

The practices and decision-making of contemporary agricultural producers are governed by a multitude of different, and sometimes competing, social, economic, regulatory, environmental and ethical imperatives. Understanding how they negotiate and adapt to the demands of this complex and dynamic environment is crucial in maintaining an economically and environmentally viable and resilient agricultural sector. This paper takes a socio-cultural approach to explore the development of social resilience within agriculture through an original and empirically grounded discussion of people-place connections amongst UK farmers. It positions enchantment as central in shaping farmers' embodied and experiential connections with their farms through establishing hopeful, disruptive and demanding ethical practices. Farms emerge as complex moral economies in which an expanded conceptualisation of the social entangles human and non-human actants in dynamic and contextual webs of power and responsibility. While acknowledging that all farms are embedded within broader, nested levels, this paper argues that it is at the micro-scale that the personal, contingent and embodied relations that connect farmers to their farms are experienced and which, in turn, govern their capacity to develop social resilience.

Achieving and evidencing research 'impact'? Tensions and dilemmas from an ethic of care perspective

While many academics are sceptical about the 'impact agenda', it may offer the potential to re-value feminist and participatory approaches to the co-production of knowledge. Drawing on my experiences of developing a UK Research Excellence Framework (REF) impact case study based on research on young caregiving in the UK, Tanzania and Uganda, I explore the dilemmas and tensions of balancing an ethic of care and participatory praxis with research management demands to evidence 'impact' in the neoliberal academy. The participatory dissemination process enabled young people to identify their support needs, which translated into policy and practice recommendations and in turn, produced 'impact'. It also revealed a paradox of action-oriented research: this approach may bring greater emotional investment of the participants in the project in potentially negative as well as positive ways, resulting in disenchantment that the research did not lead to tangible outcomes at local level. Participatory praxis may also pose ethical dilemmas for researchers who have responsibilities to care for both 'proximate' and 'distant' others. The 'more than research' relationship I developed with practitioners was motivated by my ethic of care rather than by the demands of the audit culture. Furthermore, my research and the impacts cited emerged slowly and incrementally from a series of small grants in an unplanned, serendipitous way at different scales, which may be difficult to fit within institutional audits of 'impact'. Given the growing pressures on academics, it seems ever more important to embody an ethic of care in university settings, as well as in the 'field'. We need to join the call for 'slow scholarship' and advocate a re-valuing of feminist and participatory action research approaches, which may have most impact at local level, in order to achieve meaningful shifts in the impact agenda and more broadly, the academy.