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Curated Journal Articles on Mesothelioma

The lived experience of patients with pleural mesothelioma

International Journal of Palliative Nursing. 2008 Feb;14(2):66-71. [Link]

Hughes N, Arber A.

Macmillan Nurse Specialists, The Beacon, Guildford, Surrey, UK. Nicola@hughes7070.fsnet.co.uk

Abstract

This paper reports on a research study of five patients diagnosed with mesothelioma. The study used a phenomenological approach to explore patients’ lived experience using in-depth interviews. The findings identify that patients have many unmet psychosocial and emotional needs and that there was a lack of information provided to patients about specialist supportive and palliative care services. A number of the patients found specialist supportive care by chance rather than by referral. In addition, patients were involved in complex medico-legal matters in relation to asbestos exposure, and this was an additional burden for them and their spouse or carer. A feeling of social isolation was also reported and a number of patients would welcome the opportunity to meet with other people in the same situation as themselves. In conclusion, there is a lack of attention to the emotional needs of this group of patients, which means that supportive care resources are not being accessed in a timely and flexible manner.

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