Learning about Breathlessness study (LaB)
Research type
Research Study
Full title
Developing a relevant and acceptable educational intervention for carers of patients with breathlessness in advanced disease
IRAS ID
145204
Contact name
Morag Farquhar
Contact email
Sponsor organisation
Cambridge University Hospitals Foundation Trust and the University of Cambridge
Research summary
Breathlessness is a frightening, disabling symptom of advanced disease. We know from our previous work that informal carers (families/friends of people with breathlessness) want a better understanding and knowledge of breathlessness. Educating carers about breathlessness, and ways to manage it, may help both patients and carers. Despite all we know about carer need in advanced disease, there are few interventions to support them. This study will co-develop (with carers and clinicians) an evidence-based educational intervention for carers of patients with breathlessness in advanced disease.
Aim:
To develop an evidence-based educational intervention for informal carers of patients with breathlessness in advanced disease.
Method:
The study has four stages.
Stage 1 (Identifying carer needs and preferences): single qualitative interviews with breathlessness patients and their carers to identify carers’ educational needs and how they would like to learn more about breathlessness (12 patients with cancer and 12 patients with chronic lung disease, and their carers).
Stage 2 (Identifying evidence-based intervention content with clinical experts): a single workshop with clinical experts (health care professionals) in breathlessness which will review the findings of Stage 1 and develop the evidence-based content of the intervention and consider how it might be delivered (its format).
Stage 3 (Intervention co-development with informal carers): two single workshops with informal carers (one for each disease group: cancer and chronic lung disease) to co-develop the intervention based on the findings of Stage 1 and 2.
Stage 4 (Identification of referrer-relevant outcomes): on-line survey of clinicians (health care professionals) who might deliver or refer to the intervention; the survey aims to identify outcomes to measure in a future trial of the intervention (beyond this study).The study is funded by Dimbleby Cancer Care for a two year period.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
14/EE/0009
Date of REC Opinion
17 Jan 2014
REC opinion
Favourable Opinion