Unsung heroes of lung cancer: Perspectives from caregivers in the lung cancer Canada survey

Abstract

Background: Lung cancer (LC) is a major cause of cancer death, morbidity and loss of function. Caregivers (CGs) of patients ( pts) with LC provide emotional, physical, and financial support, but their contribution is under-reported. The Lung Cancer Canada Survey aimed to study the impact of LC diagnosis and treatment on pts and CGs. Method(s): This online survey for pts and CG was conducted in August 2015. The questionnaire covered demographics, emotional issues and stigma, symptom burden, quality of life, treatment experiences, and unmet needs. Anonymously collected results were collated by Lung Cancer Canada. Result(s): 91 pts and 72 CG completed 163 interviews. Most CGs were partners (54%) or parents (38%). 60% were the primary CG, and 79% were former CGs: 68% of their care receivers had died. Most CGs coped well (79%), but stressors included care-receiver's declining health, their own emotions, and balancing responsibilities. Fatigue, depression, and respiratory complaints were the most challenging symptoms for CGs and pts. CGs reported more negative feelings than pts: anxious/stressed 61%v42%, depressed/hopeless 32%v11%, cared for 13%v38%, encouraged 11%v25%. CGs felt less support than pts from their healthcare team (75%v92%) and family/friends (65% v87%). Treatment satisfaction was lower among CGs: only 58% felt very/somewhat satisfied (v 82% of pts). 68% of CGs reported a negative stigma attached to LC, 35% felt there was less empathy toward LC than other cancers, and 38% felt they had to advocate harder for LC than other cancers. Notably, some CGs (8%) and pts (5%) reported a lack of compassion from medical professionals after a LC diagnosis. 50% of CGs reported a negative household financial impact: 69% reduced working hours, and 8% quit their jobs. More empathy, support services and financial resources were suggested to help alleviate CG burden. Conclusion(s): This is the most detailed report on the experience of CGs of pts with LC, and highlights their reactions to the illness, and the associated prejudice and stigma. It also led to opportunities for Lung Cancer Canada to decrease CG burden through support initiatives such as CG-specific educational materials and the inclusion of CGs through peer-to-peer support programs.