Learning about Breathlessness: a carer intervention (LaB2) – Tasks 1-2
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) [Tasks 1-2]
IRAS ID
239684
Contact name
Morag Farquhar
Contact email
Duration of Study in the UK
1 years, 0 months, 31 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 the 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, 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 usable in the different ways carers wanted: by themselves, with the patient, with others in a group (led by other carers or by healthcare professionals) or in one-to-one sessions with healthcare professionals.
Building on LaB1, this new study (LaB2) works with carers, patients, healthcare professionals and experts in web-based interventions to make a prototype of the intervention. This will include five topics developed in LaB1 and new work on the LaB1-identified sensitive topic “Knowing what to expect in the future”. We will review and refine the intervention. Future work will explore how it works in practice (deliverability and acceptability) by asking carers, healthcare professionals and different types of groups to try it out and see what they think of it. We will also start work to prepare for how we test the intervention in future studies.
REC name
London - Stanmore Research Ethics Committee
REC reference
18/LO/1704
Date of REC Opinion
15 Oct 2018
REC opinion
Favourable Opinion