When immunosuppression and COVID‐19 intersect: An exploratory qualitative study of young lung transplant recipient perceptions of daily life during a pandemic

Abstract

Background The COVID‐19 pandemic poses an increased risk of infection, severe illness, hospitalization and mortality for young people who are immunosuppressed, including lung transplant (LTx) recipients. The aim of this study was to explore the intersection between immunosuppression and COVID‐19, through the impacts of the pandemic upon the daily lives of young LTx recipients residing in the Australian state of Victoria. Methods An exploratory qualitative research study was undertaken via consumer engagement. A purposive sample of 11 LTx recipients, residing in Victoria, was recruited during the first year of the COVID‐19 pandemic. Semi‐structured interviews were conducted to gain insights into their daily life and healthcare experiences, including the impacts of the COVID‐19 pandemic. Data were interpreted using thematic analysis. Results Four major themes were identified: (1) occupational deprivation due to the intersection of COVID‐19 and lung transplant; (2) resilience and acceptance of restrictions; (3) infection control and vigilance about risk; and (4) care experiences of telehealth. Conclusions Occupational deprivation emerged as a common theme, specifically in the context of loss of access to meaningful everyday activities of developmental significance. However, participants also commonly reflected upon their ability to flexibly adjust to changing socially regulated community and healthcare environments. A high degree of acceptance and compliance with public health orders was self‐reported, may be indicative of this cohort's long‐term experience of chronic illness and their understanding of the importance of minimizing infection risks. Youth‐informed healthcare strategies were identified as keystone to engaging them in institutional change and program adaptation during a pandemic.

Acceptability of an mHealth Family Self-management Intervention (myFAMI) for Pediatric Transplantation Families: Qualitative Focus

“…The high acceptability for an mHealth smartphone intervention has been similarly reported by adult liver transplantation recipients who stated that an app would help with their transplantation recovery [ 14 ]. mHealth has also been reported as an accessible and effective way to provide medical care and psychosocial support to adolescent and young adult lung transplantation recipients, engaging them in their own health care [ 31 ]. Further, a study with a platform similar to the one used in this study utilized SMS text messaging with adolescent solid organ transplantation recipients.…”

“…Each family member received individual attention specific to the needs identified in his/her answers to the 8 daily questions. The importance of individualized care was also reported by lung transplantation recipients during the COVID-19 pandemic [ 31 ].…”

Application of occupational justice concepts to children who are born preterm or admitted to neonatal intensive care and their parents: a scoping review protocol

“…9(p.217) pandemic, reflecting the intersection between prior health status and a pandemic. 14 Reviewing the application, context, and usage of social justice terms within the literature will reveal whether a critical connection has been made between social justice concepts and neonatal care as a discipline. If clinical practice does not take into consideration such injustices, there will be a clear need to develop the therapeutic role, pedagogy, interventions, and assessments to holistically consider the broader needs of families experiencing a NICU admission.…”

“…Families experiencing a neonatal intensive care unit (NICU) admission are not isolated from their wider environmental context. They may simultaneously experience the impact of global and humanitarian crises; for example, occupational deprivation was experienced by immunosuppressed young people during the COVID-19 pandemic, reflecting the intersection between prior health status and a pandemic 14 …”

Coping With COVID‐19: Perspectives of Caregivers of Children and Young People With Chronic Kidney Disease

“…Many experience anxiety, depressive, and posttraumatic stress symptoms both pre-and posttransplant [2]. Since March 2020, the COVID-19 pandemic has exacerbated many of the challenges these families face, as well as creating new and pressing concerns [3], While some work has recently begun to document the complex impact of the pandemic for families of cardiac [4], liver [5], lung [6], and other solid organ transplant (SOT) recipients [7], few studies have focused exclusively on families of young people with CKD [8,9]. This research would be helpful for health care professionals to better understand the unique strains imposed by the pandemic on these families in this context; it can be used to identify and develop mitigation strategies as well as more targeted access to supports and resources.…”