Perceptions/experiences of end of life care for respiratory disease v1
Research type
Research Study
Full title
Family, patient and staff perceptions and experiences of end of life care for those living with a non-malignant progressive respiratory condition.
IRAS ID
128138
Contact name
Jayne E. M. Bartholomew
Contact email
Sponsor organisation
University of Hertfordshire
Research summary
The prevalence of non-malignant respiratory disease across England and Wales is increasing with Chronic Obstructive Pulmonary Disease (COPD) alone expected to be the third highest cause of mortality by 2030 (NICE 2010). A national consultation has been carried out (Department of Health 2010) on the care and support offered to patients specifically with COPD. The national consultation has highlighted a variety of areas where further work is required to improve the equity of care (Department of Health 2010). One such area of inequity relates to end of life care and information for patients with COPD. NICE (2010) guidance has stated that palliative care for patients with a non-malignant related respiratory disease should be available from the point of diagnosis. However, this does not appear to happen in the clinical arena (Department of Health 2010). COPD has a very unclear prognostic pathway and therefore issues arising from variable disease pathways, such as psychological, emotional and social concerns may be more extensive in this patient group. In turn this may facilitate confusion and uncertainty for staff, and therefore, for the care and education that is provided. Therefore this study will aim to explore the perceptions and experiences of end of life care for those living with a non-malignant progressive respiratory condition, those working with them and their families.
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
13/EE/0384
Date of REC Opinion
17 Dec 2013
REC opinion
Further Information Favourable Opinion