COVID‐19: Impact, experiences, and support needs of children and young adults with cystic fibrosis and parents

Abstract

Background: Little is known about the impact of COVID-19 and the United Kingdom's (UK) national shielding advice on people with cystic fibrosis (CF) and their families. This study explored the experiences and support needs of children and young adults (CYAs) with CF, and parents who have a child with CF, during the COVID-19 pandemic. Methods: CYAs with CF and parents of CYAs with CF completed a UK wide online survey with open and closed questions exploring experiences, information and support needs and decision-making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken. Results: CYAs aged 10-30 years (n = 99) and parents of CYAs aged 0-34 years (n = 145) responded. Parents (72.7%) and CYAs (50.0%) worried about the virus, and both were vigilant for virus symptoms (82.7% and 79.7%). Over three-quarters of CYAs were worried about their own health if they caught the virus. CYAs worried about feeling more isolated during the virus (64.9%). Qualitative findings reported the following themes: (1) Disruption-caused by isolation, (2) impact on psychological wellbeing, (3) safety of shielding, and (4) healthcare and treatment provisionchanges to care, access and support. Conclusions: The impact of COVID-19 and UK shielding advice to have no contact with anyone outside the household caused disruption to the lives and routines of individuals in relation to work, education, social lives, relationships, CF management routines and support. Parents and CYAs highlighted the need for clear, up-to-date and tailored advice on individualized risks and shielding.

Impact of COVID-19 Pandemic on Health Care System, Education, and Mental Well-being of Children with Cystic Fibrosis and their Parents

“…Parents were concerned about their child's social and emotional development. Studies from several countries including Turkey and the United Kingdom (UK), showed similar findings with increased levels of anxiety, stress, and depression among children with CF and their families [17,18]. During the early COVID-19 restrictions period (March-April 2020), an Irish study of 1,000 people found that 41% felt lonely, 23% faced depression and 20% reported clinically significant anxiety [19].…”

Cough in adolescent with cystic fibrosis, from nightmare to COVID-19 stigma: A qualitative thematic analysis

“…This concern was heightened since the outbreak of COVID-19, as study participants had to deal with the widespread public fear of cough, a common symptom of CF and COVID-19, and the inappropriate reactions of some people. Collaco and colleagues (2021), based on a qualitative study, found that most parents, children, and adolescents are worried about the COVID-19 and their health ( Collaço et al, 2021 ). Although spreading the virus is a major concern in CF patients, these patients faced other challenges in the COVID-19 pandemic.…”

“…The COVID-19 pandemic and lockdown experience have significantly disrupted the lives of adolescent patients with CF and their parents. It has had subsequent negative effects on their psychological health ( Collaço et al, 2021 ). This outbreak has had global impacts on social life, economy, and health care.…”

Mental Health of Cystic Fibrosis Patients and the COVID-19 Pandemic in Poland: A Single-Center Comparative Study

“…According to Collaço et al, over 75% of studied CF patients worried about how possible COVID-19 infection might influence their health [ 38 ]. In the German study about COVID-19-related fears, people with CF assessed the risks of the pandemic, severe course of the disease and the possibility of death due to COVID-19 infection as being more serious than they were for than healthy people [ 39 ].…”