22 What do informal carers of people living with breathlessness in advanced disease what to learn about ‘what to expect in the future’?

Abstract

Aim Breathlessness is distressing, disabling, and common in advanced disease. Informal carers (family/friends) can lack knowledge and confidence in caring, experiencing anxiety and uncertainty. The Learning about Breathlessness programme (LaB) addresses this. LaB1 identified six topics carers want to learn about breathlessness.1 LaB2 is co-developing (with carers, patients and clinicians) a prototype web-based educational intervention for carers on breathlessness. Content for five of the six topics was developed, but additional work was needed for the sixth topic, ‘What to expect in the future’, to ensure utility and sensitivity. Method Two disease-specific focus groups and six interviews with bereaved carers of people with breathlessness due to cancer or chronic obstructive pulmonary disease (n=12) identified what carers would have liked to have learnt, and sensitive ways to present this for potentially copresent patients. Transcripts analysed using content analysis; validation sought from the Carer Advisory Group (CAG) and Study Advisory Group (SAG: includes clinical experts). Follow-on workshops with current carers and patients reviewed resultant draft webpages for utility and sensitivity. Results Regarding ‘the future’, carers wanted to learn about: coping with symptom deterioration, ‘future’ discussions with others, accessing care/support, administrative tasks (e.g. death registration), and bereavement. Findings were CAG and SAG validated. Current carers and patients provided valuable feedback on drafted webpages. Conclusion Co-developed webpages on ‘What to expect in the future’ included subjects bereaved carers identified as key; current carers and patients confirmed utility and sensitivity. Follow-on work is testing the full prototype website with carers, patients and clinicians to enable refinement. Reference Farquhar M, Penfold C, Benson J, Lovick R, Mahadeva R, Howson S, … Ewing G. Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention. PloS One 2017;12(5):e0177081.