Yasmin Gunaratnam

The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study.

Members of the public are increasingly consulted over health care and research priorities. Patient involvement in determining cancer research priorities, however, has remained underdeveloped. This paper presents the findings of the first consultation to be conducted with UK cancer patients concerning research priorities. The study adopted a participatory approach using a collaborative model that sought joint ownership of the study with people affected by cancer. An exploratory, qualitative approach was used. Consultation groups were the main method, combining focus group and nominal group techniques. Seventeen groups were held with a total of 105 patients broadly representative of the UK cancer population. Fifteen areas for research were identified. Top priority areas included the impact cancer has on life, how to live with cancer and related support issues; risk factors and causes of cancer; early detection and prevention. Although biological and treatment related aspects of science were identified as important, patients rated the management of practical, social and emotional issues as a higher priority. There is a mismatch between the research priorities identified by participants and the current UK research portfolio. Current research activity should be broadened to reflect the priorities of people affected by the disease.

‘We mustn’t judge people ... but’: staff dilemmas in dealing with racial harassment amongst hospice service users

Increasing attention is being given to the challenging of racism and racial harassment in health care organisations. Very little, however, is known about anti-discriminatory practice in the health services, or how professionals give meaning to ‘race’ in their work with service users. This paper examines these issues through representations of the ‘dilemmas’ that were talked about by hospice staff in managing incidents of racial harassment amongst service users. By addressing the micro-interactional dynamics of this work, specific attention is given to representations of the cognitive and emotional dimensions of anti-discriminatory practice: that is, how professionals talk about how they think and feel in working with, and sometimes attempting to challenge, racist service users. The paper suggests that the recognition and exploration of staff dilemmas in dealing with racism has much to contribute to the analysis of professional roles, values and expectations, while also having implications for policy and service development.

From competence to vulnerability: Care, ethics, andelders from racialized minorities

Abstract This article discusses the care of older people from groups most commonly referred to in the UK as being “minority ethnic”. It considers the significance and growing popularity of social policy initiatives aimed at cultural competence in care provided at the end of life. Drawing upon qualitative focus group interviews with 56 health and social care professionals involved in the delivery of palliative care in the UK, this paper examines how the end-of-life care of “minority ethnic” elders is talked about by professionals, highlighting the gaps that can exist between conceptual models and real-world practice. The role and relevance of cultural competence as an “abstract system” (Giddens, 1991) is examined critically and attention is drawn to the ethical potential of professional experiences of vulnerability and of not knowing what to do. It is contended that these components of care are marginalized in current approaches to cultural competence that can discourage engagement with socio-political realities and stifle emotional and moral thinking.

Eating into multiculturalism: hospice staff and service users talk food, ‘race’, ethnicity, culture and identity

Using an innovative analysis, this article concocts an imagined ‘dialogue’ between hospice staff and minoritized service users. It mixes together narrative extracts about food from separate qualitative interviews, enabling staff and service users to ‘talk’ to each other against a context of the multicultural provision of food within an English hospice. The dialogue is put to work through an analysis that explores the connections, exchange and contradictions between speakers. This analysis also theorizes the implications of the dialogue for the implementation and effectiveness of multicultural policies, procedures and practices, while also examining its relation to varied, embodied and racialized power relations at times of ill-health.

Auditory Space, Ethics and Hospitality: ‘Noise’, Alterity and Care at the End of Life

This article examines the limits and potential of hospitality through struggles over auditory space in care at the end of life. Drawing upon empirical research and a nurse’s account of noisy mourning in a multicultural hospice ward, I argue that the insurgent force of noise as corporeal generosity can produce impossible dilemmas for care, while also provoking surprising ethical relations and potentialities. Derrida’s ideas about the aporias of the gift and absolute responsibility are used to make sense of the pushy generosity of alterity as it is made to matter through sound.

Cultural vulnerability: A narrative approach to intercultural care

This article uses analysis of focus group discussions with palliative care professionals in the United Kingdom to discuss the value of a stance of cultural vulnerability in intercultural social work. Cultural vulnerability recognizes mutual vulnerabilities in caring relationships. The meanings and potential of cultural vulnerability are explicated through an in-depth case study analysis of a group interview with hospice social workers. Narrative methods are advocated as a resource in supporting practitioners to recognize cultural vulnerability and to work with indeterminacy and difficult emotions. The representation and role of cultural knowledge and racism in social work narratives is given specific attention.

Learning to be affected: social suffering and total pain at life's borders

The practice of live sociology in situations of pain and suffering is the focus of this article. An outline of the challenges of understanding pain is followed by a discussion of Bourdieus ‘social suffering’ (1999) and the palliative care philosophy of ‘total pain’. Using examples from qualitative research on disadvantaged dying migrants in the UK, attention is given to the methods that are improvised by dying people and care practitioners in attempts to bridge intersubjective divides, where the causes and routes of pain can be ontologically and temporally indeterminate and/or withdrawn. The paper contends that these latter phenomena are the incitement for the inventive bridging and performative work of care and live sociological methods, both of which are concerned with opposing suffering. Drawing from the philosophy of total pain, I highlight the importance of (1) an engagement with a range of materials out of which attempts at intersubjective bridging can be produced, and which exceed the social, the material, and the temporally linear; and (2) an empirical sensibility that is hospitable to the inaccessible and non-relational.

Care, artistry and what might be

This paper provides a critical examination of cultural competence approaches, using the findings of a development project in the black voluntary sector that aimed to increase awareness of palliative care amongst older people and carers from groups most commonly referred to in the UK as being ‘minority ethnic’. The project involved narrative interviews with a convenience sample of 33 older people and carers and 11 focus groups with a convenience sample of 56 health and social care professionals. The findings from the interviews suggest that assumptions about culture and about care as competence that inform cultural competence models can have significant drawbacks for both service users and health and social care professionals. The paper further argues that cultural competence fails to fully recognise illness and care as occasions marked by profound moral and ethical demands.

WHERE IS THE LOVE? ART, AESTHETICS AND RESEARCH

This paper discusses the use of different forms of artistic representation (poems, images, music, literature) to convey research findings. It theorises creativity as emerging from the precarious interplay between external and internal worlds that can surprise and demand invention and representation. Using examples from palliative care and ideas from post‐structuralism and psychoanalytic aesthetics, the article examines the form and content of art works as encounters and events which can ‘make way’ for what is beyond immediate recognition and experience, both how things ‘might be’ and the ‘not yet’. In tracing my own experiences of where artistic representations come from, I suggest that such representations can involve an emotional, sensual and corporeal opening out to others that involves the suspension of intellect. Through this discussion I argue that art can touch people and convey complex and incoherent notions of difference and otherness, precisely because of its ambiguities and insecurities of meaning. This ambiguity means that the lived experience of public presentation through and with art is always a gamble, based on risk and vulnerability for both the presenter and the audience. The basis of this mutual vulnerability is seen as productive and connective.

Earthing the Anthropos? From ‘socializing the Anthropocene’ to geologizing the social

Responding to claims of Anthropocene geoscience that humans are now geological agents, social scientists are calling for renewed attention to the social, cultural, political and historical differentiation of the Anthropos. But does this leave critical social thought’s own key concepts and categories unperturbed by the Anthropocene provocation to think through dynamic earth processes? Can we ‘socialize the Anthropocene’ without also opening ‘the social’ to climate, geology and earth system change? Revisiting the earth science behind the Anthropocene thesis and drawing on social research that is using climatology and earth systems thinking to help understand socio-historical change, this article explores some of the possibilities for ‘geologizing’ social thought. While critical social thought’s attention to justice and exclusion remains vital, it suggests that responding to Anthropocene conditions also calls for a kind of ‘geo-social’ thinking that relates human diversity and social difference to the potentiality and multiplicity of the earth itself.