The experiences of children with a cardiac transplant, their families and health care providers in the COVID‐19 pandemic

Abstract

Background The COVID‐19 pandemic has had deleterious impacts on pediatric patients and families, as well as the healthcare providers who have attended to their care needs. Methods In this qualitative study, children with a cardiac transplant, as well as their families and healthcare providers were interviewed to explore the impact of the COVID‐19 pandemic on pediatric care, as well as on patients' and their families' daily lives. Participants were recruited from a children's hospital in western Canada. Fifteen caregiving parents of transplanted children, 2 young patients, and 8 healthcare providers participated in interviews. Results Findings highlighted how families and their healthcare providers experienced pandemic‐related shifts. Themes highlighted experiences, which entailed (1) initially hearing about the COVID‐19 pandemic; (2) learning about their new reality; (3) adjusting to the pandemic; (4) adjusting to shifts in pediatric services; (5) evolving a view on the future, and (6) offering recommendations for cardiac care in a pandemic. Conclusions Study implications emphasize the need to critically reflect on, and advance, methods of helping young patients and their families in pandemic circumstances, and supporting healthcare providers.

An international survey of allied health & nursing professionals during the COVID‐19 pandemic: Perspectives on facilitators of & barriers to care

“…Response to COVID‐19 and transplant activities differed widely between various countries and medical systems 29 . For example, in some areas non‐urgent care was suspended, including all or components of transplant program care (e.g., new transplants in some areas/programs), waitlists increased, and the anxiety of patients and their caregivers escalated 30 . For some, there was a reallocation of some AHNP initially to help address needs in other areas of health care.…”

“…29 For example, in some areas non-urgent care was suspended, including all or components of transplant program care (e.g., new transplants in some areas/programs), waitlists increased, and the anxiety of patients and their caregivers escalated. 30 For some, there was a reallocation of some AHNP initially to help address needs in other areas of health care. Although direct patient care may have decreased, other areas of practice increased including supporting and educating patients and families through the initial uncertainty and fear.…”

Secondary impacts of the COVID-19 pandemic at a tertiary children’s hospital in Canada: a mixed-methods study

“…The impact of such measures had a broader impact and clinical consequences, for example, delayed presentations and deferrals of care. [5][6][7][8][9][10] This lead to a call for urgent monitoring and the importance of systematically collected data regarding the impact of such measures. [11][12][13] However, there is limited research on clinical case data on morbidity, mortality and secondary consequences of the COVID-19 pandemic from a clinician's perspective.…”

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.…”

“…A study of Canadian caregivers of pediatric cardiac transplant recipients using a qualitative approach also found caregivers experienced heightened anxiety at the beginning of the pandemic. They expressed concerns about the health risks associated with COVID-19 transmission, but were also concerned about their child's isolation as a result of pandemic protocols, including remote education [4]. Some caregivers noted positive aspects of their pandemic experience, such as enjoying more time spent with family [4] and greater family cohesion [7].…”