Learning about Breathlessness: a carer intervention (LaB2) – Task 3
Research type
Research Study
Full title
Development, refinement, and acceptability of an educational intervention for informal carers of patients with breathlessness in advanced disease (Learning about Breathlessness Study 2: LaB2) [Task 3]
IRAS ID
258005
Contact name
Morag Farquhar
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
0 years, 2 months, 12 days
Research summary
Breathlessness is distressing and disabling. It is common in advanced cancer and non-cancer conditions such as chronic obstructive pulmonary disease. It places burdens on patients and family members/friends who give help and support (informal carers) by providing personal, practical and emotional support, and often overnight vigilance. But many carers lack knowledge and confidence in caring tasks and situations. Breathlessness is frightening: carers experience anxiety, isolation, uncertainty and helplessness.
The Learning about Breathlessness Study programme (LaB) aims to develop and test a way of helping carers (an intervention) to learn about breathlessness in life-limiting disease, to increase their knowledge and confidence. Our first study (LaB1) confirmed carers’ need and desire for this help. Working with carers, patients and clinical experts in breathlessness, LaB1 identified six topics carers wanted to learn about and how we might test whether the intervention works. Carers told us the proposed web-based intervention needed different types of information (pictures, videos, words) from clinical experts and other carers, and be suitable for the four different ways carers wanted to access it: (1) by themselves, (2) with the patient, (3) with others in a group (led by other carers or by healthcare professionals) or (4) in one-to-one sessions with healthcare professionals.
Building on LaB1, LaB2 (Tasks 1-2) worked first with carers, patients, healthcare professionals and experts in web-based interventions to make a first version of the website and refine it following feedback. LaB2 (Task 3) will now explore how the website could work in practice by asking carers, patients and healthcare professionals to try it out (in the four different ways carers suggested in LaB1) and give us feedback. We will also try out some questionnaires with carers and patients that we may use when testing the intervention in future studies, to make sure they are appropriate.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
20/SW/0013
Date of REC Opinion
3 Feb 2020
REC opinion
Favourable Opinion