title: The lived experience of patients with pleural mesothelioma.
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.
authors.affiliation: Macmillan Nurse Specialists, The Beacon, Guildford, Surrey, UK. Nicola@hughes7070.fsnet.co.uk
authors.forename: Nicola
authors.initials: N
authors.lastname: Hughes
authors.forename: Anne
authors.initials: A
authors.lastname: Arber
mesh_terms: D006801:Humans; D008654:Mesothelioma / Q000523:psychology* / Q000628:therapy; D010166:Palliative Care; D010997:Pleural Neoplasms / Q000523:psychology* / Q000628:therapy