‘Artists catalysing change and facilitating health and flourishing’ & ‘Perceptions, attitudes and experiences of end of life care for heart failure’ (School of Medicine & Health Seminar Series, May 1 2012)

School of Medicine & Health Seminar Series
Tuesday 01st May in F009, Stockton Campus
12.00 lunch, 12.30 seminar
Presented by two of the School’s PhD candidates:

Anni Raw
Is there a transnational practice form in evidence? Comparing researcher observations and practitioners’ perspectives on community-based participatory arts practice in the UK and in Mexico: Artists catalysing change and facilitating health and flourishing.

Anni is a 3rd year PhD Researcher in the School of Medicine and Health (CMH). Her research aims to characterise and develop an interdisciplinary conceptualisation of non-professionalised community arts and health practice. Previously a singer and community musician, Anni’s interest in researching arts and health practice developed after evaluating community based arts projects. Anni is supervised by Prof Jane Macnaughton, Dr Andrew Russell and Dr Sue Lewis.

This paper draws on current research exploring community-based, participatory arts practice in the North of England and Mexico City, to discuss whether a core, common practice form can be identified and articulated in this unregulated field of arts and health practice. Noting the value of exploring two entirely discreet national sites, the international comparison is used to question whether, if such a form can be identified at all, the practice is transnational, displaying shared characteristics and commonalities that transcend national contextual differences. Research findings trace recurring commonalities in the practice observed, and in the reflective discussions with practitioners in both sites. Commonalities and shared characteristics emerge in, amongst other areas, practitioners’ motivations, perceptions of project participants, self-identifications as professionals, modes of engagement with groups and strategies for catalysing change, and individual investment in their practice, including its value for them as artists. The discussion draws out convergences and divergences in practice norms across data from both sites, noting where divergences echo the nationalities of contributors, and drawing conclusions about the implications of these findings for the existence of a transnational practice form. Based on the suggested level of convergence, the paper argues for the value of articulating a grounded characterisation of a ‘participatory arts practice’ form, at use within numerous community health projects, and recognisable beyond national boundaries. It proposes this as an invaluable cornerstone for international linking, professional development programmes and the sustainability and growth of arts and health work at an international level.

Rachel Stocker
Perceptions, attitudes and experiences of end of life care for heart failure: Are current end of life paradigms appropriate and applicable for heart failure?

Rachel is a second year PhD student in the School of Medicine and Health. Her research centres on communication surrounding the diagnosis and prognosis of heart failure. Rachel has a background in Psychology with a specialism in Health Psychology, and an interest in the lived experience of chronic conditions. Her Masters dissertation focussed on psychosocial influences on the self management of insulin dependent diabetes mellitus. Rachel is supervised by Dr Helen Close and Prof Pali Hungin. Further information on Rachel’s paper This paper presents interim findings from current research on the experience of heart failure in the North East of England. Heart failure (HF) is a progressive, life-limiting illness with a mortality rate of 50% within four years of diagnosis. Patients diagnosed with heart failure often have complex needs at the end of life. However it is difficult for doctors to accurately predict, and thus manage, the end-of-life phase due to the unpredictable disease trajectory, the impact of co-morbid conditions, and non-specific signs and symptoms. These challenges mean that patients and carers often report an undesirable experience of care in the last year of life, with a lack of effective communication and proactive care planning surrounding their illness journey. A large body of research demonstrates that many patients and carers report little or no prior communication about the terminal nature of the illness. In response, there has been a growth in care pathway development, investment in multi-disciplinary palliative care teams, and a focus on better communication. However, little is known about the impact of these developments on end of life care in heart failure and because many of these developments are drawn from the cancer arena, there is an urgent need to understand more about their transferability or applicability for end of life care for HF. This project explores the perceptions and experiences of care from the perspective of clinicians, patients with HF, and carers. A qualitative, grounded theory methodology will synthesise interview data from 10-20 clinicians (cardiologists, GPs and HF nurses), 10-20 HF patients, and 10-20 HF carers. Interviews focus on perceptions and experiences of diagnosis and prognosis of HF, and patient and carer interviews will be repeated at T+6 months to explore any shifts in understanding and perception. Qualitative observations of HF clinics and nurse-led home visits are also being conducted currently to examine the interplay between clinician and patient. The project began recruitment and data collection in February, and preliminary findings will be presented at the Seminar. It is anticipated that findings will inform the development of an improved paradigm of end of life care in HF, and ultimately an improved experience for those delivering and receiving HF care.

An informal lunch will be served from 12, followed by the seminar itself at 12.30. Please RSVP to Rachel Pears before Friday 27th April for catering purposes.

About Centre for Medical Humanities

Centre for Medical Humanities
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