Daily burdens of recipients and family caregivers after lung transplant

Context-Lung transplant recipients are prescribed a complex medical regimen that is thought to be burdensome and to interfere with daily activities of recipients and family caregivers. Yet empirical studies describing the activities that lung transplant recipients and their family caregivers perform on a typical day and the emotions associated with performing these activities are lacking. Objective-To identify the daily activities and burdens after lung transplant. Design-The Day Reconstruction Method and content analysis were used to reconstruct a typical day for lung transplant recipients and their family caregivers. Setting-The adult cardiothoracic transplant program of The University of Pittsburgh Medical Center. Participants-Twenty-one dyads of lung transplant recipients and their family caregivers. Main Outcome Measures-Variables of interest included lung transplant recipients' and family caregivers' daily activities and associated emotions, sociodemographics, clinical characteristics, and patient-reported outcomes of quality of life, symptoms of depression and anxiety, and functional performance. Results-Participants reported 286 daily activities and 138 associated positive and negative emotions. No activities or emotions were uniquely reported by lung transplant recipients or caregivers, providing evidence of the shared responsibility for caregiving and health maintenance. Most activities reported by caregivers and lung transplant recipients were health-related. Compared with lung transplant recipients, caregivers reported positive emotions more often, yet reported lower overall daily mood. This finding is consistent with results of previous studies indicating that specific caregiving tasks were typically rewarding for caregivers, but overall, care giving takes its toll. Conclusion-Findings enhance our understanding of the burdens lung transplant recipients and caregivers face and point to the need for further support for dyads after lung transplant. (Progress in Transplantation. 2012;22:41-48) (C) 2012 NATCO, The Organization for Transplant Professionals doi: http://dx.doi.org/10.7182/pit2012815