Blog by Dr Morag Farquhar
Breathlessness is a frightening symptom for patients to experience, and frightening for family and friends who support them (their carers). Carers of patients with breathlessness due to advanced disease can lack knowledge and confidence in knowing how best to help the person they look after. We conducted research to find out whether carers wanted to learn about breathlessness, what they wanted to learn, and how they wanted to learn it so that we could develop an intervention to help them. We interviewed carers and patients and then worked with clinical experts in the field and groups of carers and patients to develop the intervention content and format.
Carers want to learn about breathlessness. We identified six topics they want to learn about and how they want to learn. Some wanted to learn in groups, some in one to ones, some on their own, and some with the patient. Our solution to this was to develop a web-based platform which could be accessed through a variety of routes: through support or patient rehabilitation groups, with clinicians or by the carer independently. An executive summary of this work, funded by Dimbleby Cancer Care, is available here.
We are now seeking funding for a follow on study to develop and test the intervention.
Dr Morag Farquhar is Senior Research Associate & NIHR Career Development Fellow at the Primary Care Unit