Daily Burdens of Recipients and Family Caregivers after Lung Transplant

Abstract

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.

Relative's experiences before and after a heart or lung transplantation

“…In the present study the relatives felt that they, to a great extent, had to carry the heavy burden of the patients' physical, psychological or social needs. This is in line with Xu et al (30) who showed that family caregivers to lung transplant patients actively supported the patients with healthcare more than seven hours every day.…”

Functional Status After Lung Transplantation in Older Adults in the Post-Allocation Score Era

“…We wanted to focus on long-term (1–5 years post-transplantation) trajectories to minimize bias from perioperative complications. Lung transplantation recipients, similar to older adults recovering from other major surgeries (12–18), typically have a period of disability immediately post-surgery followed by functional recovery and rehabilitation. The course of this period is variable, but our analyses assume (based on our clinical experience) that the majority of older recipients reach their “peak” post-transplantation function within a year of the surgery such that functional trajectories thereafter reflect long-term well-being rather than factors influenced by perioperative complications.…”

Psychosocial Issues Facing Lung Transplant Candidates, Recipients and Family Caregivers

“…77 One qualitative study determined that 30% of caregivers' daily activities during the first 6 months after transplant were related to supporting their loved one's health. 80 Although performing these activities can often be gratifying, adjusting to the changing family dynamics, household responsibilities, and job-related capacities associated with transplant may compound the discrete burdens of caregiving, as evidenced by caregivers reportedly spending less of their day in a positive mood than did the lung recipients for which they care. 80 At the same time, however, caregivers also reported positive outcomes of caregiving, such as discovering inner strength and support from others and realizing the important things in life.…”