Author: Collaço, Nicole; Legg, Julian; Day, Maria; Culliford, David; Campion, Anna; West, Carolyn; Darlington, Anneâ€Sophie
Title: COVIDâ€19: Impact, experiences, and support needs of children and young adults with cystic fibrosis and parents Cord-id: go5hscdu Document date: 2021_6_29
ID: go5hscdu
Snippet: BACKGROUND: Little is known about the impact of COVIDâ€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 COVIDâ€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 suppor
Document: BACKGROUND: Little is known about the impact of COVIDâ€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 COVIDâ€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 decisionâ€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 threeâ€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 provision—changes to care, access and support. CONCLUSIONS: The impact of COVIDâ€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, upâ€toâ€date and tailored advice on individualized risks and shielding.
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