Introduction Breathlessness is distressing and disabling, and common in advanced cancer and non-cancer conditions. Informal carers (family members/friends) provide unpaid support, but many lack knowledge and confidence in caring, experiencing anxiety, uncertainty, and helplessness when faced with breathlessness. The Learning about Breathlessness programme (LaB) is addressing this.
LaB1 identified six topics carers want to learn about breathlessness (Farquhar, Penfold, Benson, Lovick et al., 2017). LaB2 is working with carers, patients and healthcare professionals to co-develop and test 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.
Methods Two disease-specific focus groups and six interviews were conducted with bereaved carers of people with breathlessness due to cancer or chronic obstructive pulmonary disease (COPD) (n=12). Data were sought on what carers would have liked to have learnt about the topic, and sensitive ways to present this for potentially co-present patients. Transcripts were analysed using content analysis, and 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 resulting draft webpages on this topic for utility and sensitivity.
Results Carers learning preferences for ‘What to expect in the future’ included support with: coping with symptom changes as a patient’s condition worsened, discussing ‘the future’ with others, accessing care and support, administrative tasks (e.g. death registration), and bereavement. Findings were validated by the CAG and SAG. Current carers and patients provided valuable feedback on drafted webpages.
Conclusion Co-developed webpages on the topic of ‘What to expect in the future’ covered subjects bereaved carers identified as important to learn about. Their utility and sensitivity was confirmed by current carers and patients. Follow-on work is testing the prototype website with carers, patients and health care professionals to enable refinement.
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