Patients with chronic and terminal illnesses often also struggle with depression and fear, both of which can be caused by the illness itself.
Those that remain in hospital must then navigate these feelings along with boredom and isolation, which can lead to deterioration in both their physical and mental wellbeing.
It is clear that medical care alone is not sufficient for people in these scenarios, and hospitals are beginning to acknowledge the need for high-level long term and palliative care.
Researchers at UEA and the University of Cambridge have developed a method to give people with progressive conditions the higher quality of care that they deserve.
The research began by identifying aspects of life that patients with advanced Chronic Obstructive Pulmonary Disease (COPD) required better help with. A tool named SNAP (Support Needs Approach for Patients) was then created to help the patients to express their needs. SNAP provides a framework for patients to consider what areas they would like more help in. They can then discuss these with a healthcare professional.
It is hoped that in the future SNAP will be opened up to patients with other progressive conditions. The tool has been included on a new set of criteria called The Daffodil Standards which aims to improve the quality of hospital care.
Lead researcher from UEA’s School of Health Sciences, Dr Morag Farquhar, confirmed that patients with advanced long-term illnesses (such as COPD) ‘experience disabling physical symptoms, which are often combined with psychological and social distress’. She also states: ‘patients often have difficulty reporting their support needs to health care professionals’. This is the very issue that SNAP aims to deal with.
The research team published thirty-one papers on COPD support needs as well as interviewing twenty patients with advanced COPD to create a list of common support needs. These included support with managing breathlessness and dealing with depression, as well as practical support with cooking and respite care for carers.