Woede, schuld en verwijten zijn de eerste reacties op de fatale diagnose maligne mesothelioom. Die woede en verwijten zijn gericht op de veroorzakers van de ziekte: werkgevers en de overheid. Britse mesothelioompatiënten hebben veel behoefte aan informatie, psychosociale en emotionele steun, ook omdat ze naast hun lichamelijke lijdensweg met complexe, medische en financiële zaken te maken krijgen. Bron: Hughes, N. &. Arber, A. (2008). The lived experience of patients with pleural mesothelioma. International Journal of Palliative Nursing, 14, nr. 2. p. 66-71.
Hughes, N. &. Arber, A. (2008). The lived experience of patients with pleural mesothelioma. International Journal of Palliative Nursing, 14, nr. 2. p. 66-71.
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.