Impact of COVID-19 on Families of Pediatric Solid Organ Transplant Recipients

Abstract

Objective The COVID-19 pandemic and lockdown measures have had a clear psychological impact on families, and specifically those with children with chronic illnesses have reported greater overloads and exhaustion. The objective of this study was to evaluate the exposure, impact and experience of the pandemic on families of pediatric solid organ transplant (SOT) recipients compared to families of healthy children and adolescents. Methods We recruited 96 families, 48 with a pediatric SOT recipient and 48 healthy controls, matched by child age and gender. A primary caregiver from each family responded to an online sociodemographic questionnaire and the COVID-19 Exposure and Family Impact Survey (CEFIS), which explores the exposure, impact and experience of the pandemic and lockdown on families. Results Exposure to the pandemic was greater in families of healthy children and adolescents. The impact was mostly negative in both groups: caregivers reported increased anxiety (76%) and mood disturbances (71.9%) and hindered quality of sleep (64.6%) and health habits (58.3%). On the positive side, family relationships improved. Qualitatively, the SOT group positively perceived isolation and established hygienic measures as protective and destigmatizing, although they reported fear of virus transmission to their child. Conclusions The psychological impact of the pandemic has been similar in both groups, although families of transplant recipients have protected themselves more, probably because they are used to prevention measures and they see contagion as a graver risk. Additionally, SOT recipients’ families presented some idiosyncratic elements, especially a decrease in their perception of stigma associated with the medical condition.

The impact of the COVID‐19 pandemic on pediatric chronic illness groups

“…Forner‐Puntonet and colleagues ( 2021 ) compared families of pediatric solid organ transplant recipients with families of healthy children matched by age and gender. Overall, families in the control group had greater exposure to COVID‐19 than transplant recipients, measured by self‐report of COVID‐19 diagnosis or close contact with a COVID‐positive individual.…”

Early Evidence of the Interplay between Separation Anxiety Symptoms and COVID-19-Related Worries in a Group of Children Diagnosed with Cancer and Their Mothers

“…Other studies on healthy samples pointed out that mothers' COVID-related worries can compromise their ability to recognize and respond adequately to children's signals, increasing their anxieties and concerns [17]. Very few studies explored the COVID-19-related worries in chronically ill children's families [14,18]; no studies to our knowledge examined the impact of those parents' concerns on children's psychological functioning.…”

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

“…2 In contrast, families of solid organ transplant (e.g., liver, kidney, heart) recipients experienced less stigma in practicing safety protocols (e.g., wearing a mask), adjusted to social distancing and infection protocols, and observed family cohesiveness and physical health improvements in their children. 10 To better understand and address care issues and the extent and nature of families' experiences, this study explored perspectives of pediatric patients and families and their healthcare providers. Specific research questions were ( Transcripts were analyzed using a qualitative content analysis approach, 13,14 following a three-step process of: (i) reading transcripts to discern meaning units, (ii) conducting an inductive analysis, and (iii) creating a map that displays the organization of data.…”