Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure

Background: Breathlessness is a common, distressing symptom in patients with advanced disease. With increasing focus on home death for patients, carers are expected to support breathless people at home. Little is known about how carers experience breathlessness and the differences in caring for someone with breathlessness and malignant or non-malignant disease. Aim: To compare experiences of caring for a breathless patient with lung cancer versus those with heart failure and to examine factors associated with caregiver burden and positive caring experiences. Design: Cross-sectional survey of caregivers of breathless patients. Setting/participants: Participants were recruited from two London hospitals. Inclusion criteria: caregivers of patients with breathlessness and heart failure or lung cancer. Measures included self-completion of Short Form version of Zarit Burden Interview, a ‘positive caring experiences’ scale and Palliative Care Outcome Scale. We compared caregiver reports between heart failure and lung cancer. Multiple regression analyses were used to examine factors related to burden and positive caring experiences. Results: In total, 51 heart failure and 50 lung cancer caregivers were recruited. Most were spouses (72%) and women (80%). Severity of patient breathlessness was similar in both groups. Caregiver concerns were mostly similar across conditions. Higher burden was associated with poorer ‘quality of patient care’ and worse carer psychological health (R 2 = 0.37, F = 12.2, p = 0.01). Caregiver depression and looking after more breathless patients were associated with fewer positive caring experiences (R 2 = 0.15, F = 4.4, p = 0.04). Conclusions: Those who care for breathless patients report high levels of unmet needs and burden, equally severe for heart failure and lung cancer caregivers. Caregivers of patients with more severe breathlessness report fewer positive caring experiences and should be targeted by services with increased support in managing this symptom