Vs1 - Mesothelioma; bereaved carers experience of end of life care.
Research type
Research Study
Full title
A qualitative study to explore carers perception and experience of end of life care following an individuals death from mesothelioma.
IRAS ID
125625
Contact name
Jayne Brown
Contact email
Sponsor organisation
University Hospitals of Leicester
Research summary
Mesothelioma is a cancer of mesothelial cells that are found in the membranes that line the chest (pleural) and abdominal (peritoneal) cavities.
Mesothelioma is an industrial disease that affects mostly men over 65 years of age; the only known cause is exposure to asbestos which has usually occurred 15-40 years previous. The industrial nature of the diagnosis means in addition to navigating health care systems patients and their carers have complex benefit and compensation claims to process.
With over 2500 cases each year the UK has the highest incidence of mesothelioma in the world, annually the numbers are increasing and there is a direct correlation between this incidence and our nations historical use of asbestos.
Mesothelioma is associated with a range of debilitating and challenging disease related symptoms including breathlessness, pain, cough, lethargy, weight loss and sweating. Mesothelioma is treatable but not curable. Often patients enter into lengthy complex treatment programs resulting in a range of side effects with no guarantee of benefit. With or without treatment survival is usually measured in months.
In 2012 Mesothelioma UK, the National Macmillan Mesothelioma Resource Centre published findings from a National Mesothelioma Experience survey. Over 600 patients and carers completed the survey, several recurring themes were highlighted including a number regarding end of life care.
Carers’ responses revealed experience and care at the end of life was variable and often lacking. Carers reported a particularly poor experience in terms of their preparation to care for someone with Mesothelioma at the end of life.
This study seeks to explore and describe carers experience regarding end of life care including what preparation the carers received, what was useful and what wasn’t and what additional preparation they feel would have been useful.
REC name
East Midlands - Derby Research Ethics Committee
REC reference
13/EM/0338
Date of REC Opinion
27 Sep 2013
REC opinion
Further Information Favourable Opinion