COMPLETED: How to Support children with cancer, or another serious condition, and their parents during the COVID-19 outbreak
How to Support cHildren with cAncer, or another serious condition, and theiR parents during the COVID-19 outbreak?: understanding Experiences, information and support needs, and decision-making – the SHARE study
Research team
Chief Investigators:
Professor Anne-Sophie Darlington- Professor of Child and Family Psychological Health- University of Southampton
Dr Bob Philips- Senior Lecturer and Honorary Consultant in Paediatric / Teenage-Young Adult Oncology-The Leeds Teaching Hospital NHS Trust
Dr Jess Morgan- Senior Research Fellow & Paediatric Oncology Trainee- University of York
Mr Ashley Ball-Gamble- CEO of Children’s Cancer and Leukaemia Group (CCLG)- CCLG
Project team members:
Dr Nicole Collaço- Research Fellow- University of Southampton
Dr Luise Marino- Clinical Academic Paediatric Dietitian- University Hospital Southampton
Dr Arvind Nagra- Paediatric Nephrologist- University Hospital Southampton
PPI group
Organisations involved: University of York, Children’s Cancer and Leukaemia Group, University of Southampton, University Hospital Southampton, The Leeds Teaching Hospital NHS Trust, Kidney Research UK, Kidney Care UK, British Heart Foundation, Children’s Heart Foundation ,Cystic Fibrosis Trust, Together for Short Lives, The Martin House Research Centre, Harry’s Hat, Shine.
Summary
Children and young people with cancer may be particularly vulnerable. Those undergoing treatment have a weakened immune system, meaning they will find it more difficult to fight infections. [1] Comprehensive advice for parents has been compiled by experts and disseminated through the UKs Children’s Cancer and Leukaemia Group (CCLG).[1] However, we urgently need to increase our understanding of evolving experiences, information needs and decision-making of these families under these extraordinarily stressful circumstances. Only through investigating parents’/main carers’ experiences and needs will we be able to tailor and provide the right support, in terms of guidance, information updates, and online interventions to reduce distress and anxiety.
What did we find out?
We found that the impact of COVID-19 on different populations shared some common experiences:
Disruption to healthcare services- all populations faced challenges due to disruptions in healthcare services which affected access to necessary medical care and treatments
Increased anxiety and stress- COVID-19 brought about increased anxiety and stress levels in all populations, particularly amongst caregivers who had specific concerns about their child’s health and safety
Limited social interactions- the pandemic led to limited social interactions for all populations, resulting in feelings of isolation and loneliness
Social support networks: families in general faced amplified challenges due to limited social support networks, emphasizing the importance of community resources in managing the pandemic’s effects.
Reassurance gained that certain populations may not be at significantly higher risk of adverse outcomes or psychological distress.
Findings emphasised the need for tailored support services, clear communication, education and psychological support to address challenges faced by these populations during the COVID-19 pandemic.
What difference will this make?
Insights provided valuable information for healthcare providers and relevant charities organisations to make informed decisions about how to support people and allocate resources effectively. In addition the information can be used to develop targeted strategies and interventions that address the specific challenges faced by different populations such as disruption to healthcare services, increased anxiety and stress and limited social interactions.
By understanding the impact of COVID-19 on various populations, policies can be developed to address the specific needs and concerns of different groups.
Findings emphasised the importance of prioritising clear communication, education and psychological support to ensure the wellbeing of these populations.
Why is this important for patients, health and care providers and policy makers?
Patient care: understanding the impact of COVID-19 on different populations helps healthcare providers tailor their services to meet specific needs; including ensuring access to healthcare services, managing increased anxiety and stress and providing psychological support.
Health & Care Providers: the findings provide valuable insights for healthcare providers to address the challenges faced by different populations. This includes adapting healthcare services, clear communication and providing education to effectively support patients.
Policymakers: Knowledge of the impact of COVID-19 on various population helps policymakers make informed decisions, including allocating resources, developing tailored support services, and implementing policies to address the specific needs of different populations.
Research outputs:
Yincent Tse, Anne-Sophie E. Darlington, Kay Tyerman, Dean Wallace, Tanya Pankhurst, Sofia Chantziara, David Culliford, Alejandra Recio-Saucedo & Arvind Nagra
COVID‐19 and children with cancer: Parents’ experiences, anxieties and support needs
Anne‐Sophie E. Darlington, Jessica E. Morgan, Richard Wagland, Samantha C. Sodergren, David Culliford, Ashley Gamble, Bob Phillips
https://onlinelibrary.wiley.com/doi/full/10.1002/pbc.28790
https://journals.sagepub.com/doi/full/10.1177/21501351211007102
https://link.springer.com/article/10.1007/s00467-021-05041-8
https://onlinelibrary.wiley.com/doi/full/10.1002/ppul.25537
https://onlinelibrary.wiley.com/doi/pdf/10.1111/apa.16229
https://link.springer.com/article/10.1007/s00381-023-05980-7
https://adc.bmj.com/content/108/3/198.abstract
https://www.thesun.co.uk/news/11968084/coronation-street-mitochondrial-disease/
https://www.southampton.ac.uk/news/2021/04/share-study-results.page
https://www.ncri.org.uk/areas-of-interest/cancer-covid-19/
11-share-study | Institute for Life Sciences | University of Southampton
Life Sciences Annual Reports | Institute for Life Sciences | University of Southampton
Conferences/presentations:
SIOP (International Society of Pediatric Oncology)- E-poster discussion (2021)
Royal College of pediatrics and child health- poster presentation (2021)
53rd ESPN Annual Meeting- oral presentation (2021)
7th King John Price pediatric respiratory conference- poster presentation (2021)
Webinar- Nutricia- What's next for improving nutrition & growth outcomes in infants with congenital heart disease? (2021)
Webinar- University of Surrey: Impact of Covid-19 on families: a focus on new parents, children, and people with learning disabilities, with reflections from professional practice (2021)
Webinar: Pediatric Oncology Educational meetings (2021)
Webinar: European Paediatric Psychology Network (EPPN) – background and mission (2020)