key: cord-0839409-hazct6du authors: Hatzikiriakidis, Kostas; West, Simone; Ayton, Darshini; Morris, Heather; Martin, Rani S.; Paraskeva, Miranda title: When immunosuppression and COVID‐19 intersect: An exploratory qualitative study of young lung transplant recipient perceptions of daily life during a pandemic date: 2022-04-15 journal: Pediatr Transplant DOI: 10.1111/petr.14281 sha: 0165d1314df107e6e2c8aaa8eb9da1f178b56b47 doc_id: 839409 cord_uid: hazct6du 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. The SARS-CoV-2 (COVID- 19) pandemic has significantly impacted the lives of adolescents and young people 1 . Young people have experienced significant social and economic impacts, with high rates of psychological distress (alongside an increased demand for mental health and telephone counselling services), social isolation, unemployment and educational disruption being reported. [1] [2] [3] [4] [5] Whilst the incidence of severe illness and mortality amongst young people remains low, lung transplant (LTx) recipients experience an increased risk of infection, severe illness, hospitalization and death as a result of COVID-19 transmission. [6] [7] [8] [9] [10] [11] Despite a recent body of evidence documenting the impact of COVID-19 on allograft function, the broader impact of the pandemic on the daily lives of LTx recipients has remained underexplored. 12 On March 11 2020, the World Health Organization declared COVID-19 a global pandemic. 13 This study was undertaken in the first year of the pandemic at a time when over 79 million cases and 1.7 million deaths were reported globally. 14 In Australia, the first local case was reported in January 2020, and by December 2020, approximately 28 600 cases had been reported nationwide with young people aged 15-24 years accounting for 15% of the infected population. 15 In March 2020, federal and state governments instigated pandemic response orders with wide-ranging restrictions upon community mobility in an attempt to contain increasing infection rates. Border closures, mandatory face coverings, stay-at-home directions and the closure of non-essential services were introduced. 16 , 17 The pandemic also led to operational changes in healthcare delivery through the widespread adaptation of outpatient consultations and clinical care to a remote telehealth service model for patients, including LTx recipients. 18 In this study, we examined the impact of the COVID-19 pandemic on the daily lives of young people who had previously received a LTx in Victoria, Australia. The findings outlined herein are part of a larger exploratory qualitative study that was conducted to address the following objectives: 1. To explore the experiences and insights of young people who have undergone lung transplantation and are managed in an adult centre. 2. To gain insights into the factors that young people perceive to influence their quality of life, health and well-being and use this information to develop strategies and processes by which to improve their clinical care. In this article, we address the research question: How did COVID-19 impact the life and well-being of young lung transplant recipients? The study was undertaken at a large-volume medical centre that provides LTx to children and adults. A project advisory group compromising of six clinicians, one carer and two LTx recipients provided advice on the design of the research including the interview guide and recruitment. A purposive sample of 16 young transplant recipients was recruited. Recipients aged 15-29 who underwent LTx aged ≤25 years were eligible. Exclusion criteria included: (1) Primary language other than English; (2) intellectual or learning disability preventing the provision of informed consent; or (3) being less than 6 months posttransplant and medically vulnerable. This article reports the insights of participants who resided in both metropolitan Melbourne (n = 10) where pandemic restrictions were greatest, and regional Victoria (n = 1). Participants from the broader study who lived interstate, where restrictions were absent, were excluded from the analysis (n = 5). Thematic analysis was conducted via a process of inductive and deductive coding to identify and categorize themes. 19 One researcher Table 1 . Participants discussed efficacious coping skills, as they were used to adapting to health-related changes. Historical health experiences leading to transplant and an immunocompromised status posttransplant were described as informal "preparation" for pandemic restrictions. This was particularly relevant to long periods of social isolation, boredom and loneliness, related to occupational deprivation. Five participants perceived this social difference as a lifelong characteristic of living with chronic illness, which was now more in- There was general acceptance of public health orders as a means of protecting participants, as vulnerable members of the community. Insights into the effect of the pandemic on healthcare experiences were also provided, with particular reference to the adoption of telehealth as a substitute for face-to-face healthcare. 18 In Australia, telehealth was supported by federal government funding changes to the nationalized healthcare model. 25 Consumers have previously described both the positive (e.g. ease and convenience) and negative aspects (e.g. challenges in communication, including lack of eye contact and difficulties in responding to non-verbal body language) of these modalities. 26 This was similarly reflected in our cohort who valued the convenience, but felt the loss of continuity and familiarity associated with face-to-face consultations. The participatory nature of this study was a significant strength that enabled us to gain an initial understanding of the impacts of the COVID-19 pandemic on this cohort. Another strength was the ability to leverage technology to conduct this study remotely during a public health crisis when movement in the community was restricted, allowing us to collect data in real-time, rather than retrospectively. The results, however, should be interpreted within the context of several limitations. Although the impact of the COVID-19 was an area of inquiry during the interviews, this was not the central focus of the broader project and as such these findings are preliminary. Furthermore, the small sample size limited the generalizability of the conclusions drawn, while acknowledging that the impacts on this cohort may be broader than we have identified. Recent research has highlighted the significant impact of the pandemic's social climate on the psychological well-being of adult LTx recipients 27, 28 ; however, additional research specifically exploring the social and mental health impacts on young LTx recipients is needed to clarify these impacts and inform the response of the healthcare system to best support their needs in such times of crisis. Despite these limitations, the findings of this study are unique in that they have provided insight into these impacts in a country that has experienced significant restriction on community movement. This study has focussed upon youth living with an immunosuppressed lifestyle in a time of a virulent and everchanging virus. Occupational deprivation may have stalled significant life transitions typically associated with youth; however, this study has identified that participants' experiences were not wholly negative. Outcomes of this study, from the perspective of young LTx recipients during the first year of the pandemic, may assist to mitigate negative longterm sequalae of COVID-19 upon the developmental continuum of transplanted youth. The authors would like to acknowledge the contributions of the project advisory committee to the study design and thank all the young people who participated in this study. Open access funding enabled and organized by CAUL. [Corrections added on 11 May 2022, after first online publication: CAUL funding statement has been added.] The authors have no conflicts of interest to disclose. The qualitative data that support the findings of this study are The impact of COVID-19 school closure on child and adolescent health: a rapid systematic review COVID-19 and the immediate impact on young people and employment in Australia: a gendered analysis Rapid systematic review: the impact of social isolation and loneliness on the mental health of children Exploring the impact of COVID-19 on mental health outcomes in children and adolescents: a systematic review Australia's youth: COVID-19 and the impact on young people COVID-19 in lung transplant recipients: a single center case series from New York City COVID-19 in lung transplant recipients COVID-19 in lung transplant recipients: a case series from COVID-19 in lung transplant recipients COVID-19 in lung transplant recipients: a multicenter study An early experience on the effect of solid organ transplant status on hospitalized COVID-19 patients The social and clinical impact of the COVID-19 epidemic on the Strasbourg lung transplant cohort: a single-center retrospective cohort study WHO declares COVID-19 a pandemic World Health Organisation. Coronavirus disease (COVID-19) pandemic Australian Government Department of Health. Coronavirus (COVID-19) case numbers and statistics Premier's statement on changes to Melbourne's restrictions About_Parli ament/ Parli ament ary_Depar tment s/Parli ament ary_Libra ry/pubs/rp/rp202 1/Chron ologi es/ COVID -19Sta teTer ritor yGove rnmen t Anno uncem ent s#_Toc52 275800 Surf's up, radical approaches to riding the COVID-19 waves: a lung transplant perspective Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Basics of Qualitative Research: Grounded Theory Procedures and Techniques NVivo qualitative data analysis software World Federation of Occupational Therapists. Definitions of occupational therapy from member organisations When people cannot participate: occupational deprivation OT Australia position statement: occupational deprivation Adherence to social distancing and use of personal protective equipment and the risk of SARS-CoV-2 infection in a cohort of patients with multiple sclerosis How Australian health care services adapted to telehealth during the COVID-19 pandemic: a survey of telehealth professionals People's experiences and satisfaction with telehealth during the COVID-19 pandemic in Australia: cross-sectional survey study The impact of the COVID-19 pandemic on the emotional well-being and home treatment of Belgian patients with cystic fibrosis, including transplanted patients and paediatric patients Coping strategies, anxiety and depression related to the COVID-19 pandemic in lung transplant candidates and recipients. Results from a monocenter series Outcomes of adolescent recipients after lung transplantation: an analysis of the international society for heart and lung transplantation registry Adolescent and parent perceptions of telehealth visits: a mixed-methods study When immunosuppression and COVID-19 intersect: An exploratory qualitative study of young lung transplant recipient perceptions of daily life during a pandemic