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.

This service evaluation aimed to investigate the value of clinical psychology support into paediatric neuro-oncology rehabilitation over a two year period. Positive outcome and feedback data were obtained, evidencing the need for support to be introduced to families early on.

Atualização sobre a pandemia do COVID-19: uma revisão integrativa Update on the COVID-19 pandemic: an integrative review

Purpose Little is known about the impact of COVID-19 on children and young people (CYP) with hydrocephalus and their families. This study explored the experiences and support needs of CYP with hydrocephalus and parents who have a child with hydrocephalus during the COVID-19 pandemic. Methods CYP with hydrocephalus and parents of CYP with hydrocephalus in the United Kingdom completed an online survey with open and closed questions exploring experiences, information, support needs and decision making processes. Qualitative thematic content analysis and descriptive quantitative analyses were undertaken. Results CYP aged 12-32 years (n=25) and parents of CYP aged 0-20 years (n=69) responded. Parents (63.5%) and CYP (40.9%) worried about the virus, and both were vigilant for virus symptoms (86.5% and 57.1%). Parents (71.2%) and CYP (59.1%) worried about their child/feeling more isolated during the virus outbreak. Parents felt concerned about having to take their child to hospital with a suspected shunt problem during the virus outbreak (64.0%). Qualitative findings reported the following themes: (1) Healthcare and treatment provision: delays and challenges to access and availability of care (2) Impact of COVID-19/lockdown on daily lives and routines, and (3) Provision of information and support for parents and CYP with hydrocephalus. Conclusion The impact of COVID-19 and national measures to control the spread of the virus- no contact with anyone outside the household significantly impacted the daily lives and routines of CYP with hydrocephalus and parents. Social engagements were missed, families faced challenges to their work life, education and access to health care and support, which subsequently contributed negatively to their mental wellbeing. CYP and parents highlighted a need for clear, timely and targeted information to address their concerns.