Context: Carers’ needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease which focus on symptoms are scarce and absent for breathlessness.
Objectives: To establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness and relevant outcomes for a future randomised controlled trial (RCT) of an educational intervention for carers.
Methods: Online survey completed by 365 clinicians: medical, nursing and allied health professionals from primary care, hospital and hospice. Descriptive statistics summarised respondent characteristics and survey responses, and the chi square test applied. Content analysis of free text comments.
Results: Most clinicians reported educating carers by educating patients at clinical contacts with patients. Carer involvement was largely an ‘add-on’; an ‘active’ carer education strategy, where all carers were invited to attend, was not currently apparent. Clinicians endorsed the importance of educating carers about breathlessness through increasing carer confidence/control, helping patients’ better self-manage breathlessness and potentially reducing admissions. Joint education with patients, giving practical advice and strategies for helping patients were advised. To inform a future trial, clinicians identified improvement in patient outcomes, particularly patient quality of life, as very important in enhancing clinician adoption of an educational intervention for carers.
Conclusion: This survey revealed an appetite amongst clinicians for an educational intervention for carers of patients with breathlessness in advanced disease and provided important insights to underpin a future Phase II RCT.
- advanced disease
- palliative care
- clinician views