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

Chief Investigators:

Professor Anne-Sophie DarlingtonProfessor of Child and Family Psychological Health, School of Health Sciences, University of Southampton, SO17 1BJ, UK

Email: a.darlington@soton.ac.uk

Dr Bob PhillipsHonorary Consultant in Paediatric and Teenage and Young Adult Oncology,The Leeds Teaching Hospitals NHS Trust, Leeds

Dr Jess MorganNIHR Clinical Lecturer in Paediatric Oncology, Centre for Reviews and Dissemination, University of York, York

Mr Ashley Ball-GambleChildren’s Cancer andLeukaemia Group

Project team:Dr Nicole Collaço – University of SouthamptonDr Arvind Nagra – University Hospital Southampton NHS Foundation TrustDr Luise Marino – University Hospital Southampton NHS Foundation Trust

Organisations involved: University of York, Children’s Cancer and Leukaemia Group, University of Southampton, University Hospital Southampton NHS Foundation Trust, The Leeds Teaching Hospitals NHS Trust, Kidney Research UK, Kidney Care UK, British Heart Foundation, Children’s Heart Foundation, Cystic Fibrosis Trust, Harry’s Hat, Shine, Together for Short Lives, The Martin House Research Centre.

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.

Supporting decision-making

Children and young people undergoing treatment face ongoing compromises to their immune system, which forces families to manage infection risks regularly. Decision-making under these threatening circumstances needs to be well understood. Furthermore, we know that parents and health professionals differ in terms of what underpins their decision-making. For example, when making decisions related to treatment for febrile neutropenia (with an increased risk of infection) parents value and assess quality of life, fear, and comfort differently to health professionals.[2]

During the COVID-19 outbreak, children undergoing cancer treatment are perceived to be more at risk, and thus families will need to assess the information they receive and continue to make decisions in a changing environment. In addition, information provision through established media outlets and social media is constant and everchanging, and not always reliable. This illustrates the importance of investigating children’s and parents perspectives and experiences.

Decision-making involves the uptake of information relating to benefits, risks, and uncertainties, but most importantly, this is guided by values and preferences.[3]Families have to construct them in the moment of decision making, based on the available information.[4] When information changes, choices change, producing inconsistencies and difficulties.[5] Again, congruence between families’ preferences, values and changing experiences need to be understood to allow them to make the best decisions in looking after their children. Without this data we will not be able to support them, nor advocate for them on a broader level.

Reducing anxiety and stress

Families across the country are worried; a rapid systematic review of the experience of families under quarantine for recent severe respiratory viruses (SARS, MERS) shows very high levels of traumatic distress.[6] This has led to the development of support materials and interventions: a book for children ‘Dave the Dog is worried about coronavirus’ developed by clinicians,[7] guidance developed by the Universities of Reading and Oxford to support children and young people.[8], and general guidance to manage anxiety for young people, developed by psychologists.[9]. Children with cancer and their families are particularly worried as their child is particularly vulnerable. A 6-week online intervention, iHOPE, [10,11] providing psychoeducation targeted at the parents of children who have cancer has been piloted, and an evaluation of opening greater access to this programme is planned. Many other support services, generally delivered by face to face meetings and group sessions, are transitioning to an online delivery. These will not be strictly ‘programmatic’ and may be ongoing. During this period of implementation of this resource into the health service, there is a need to simply evaluate its effectiveness, by introducing a short assessment of anxiety and stress before and after the delivery of the intervention. The current study proposes to ask parents to complete a short (to minimise burden) validated questionnaire before and after the intervention.

Research Aim and Objectives

The study will consist of two work packages (WPs). The aims of WP 1 are 1) to explore experiences, information and support needs and decision-making, and 2) to explore how these change over time as the situation with COVID-19 evolves. The aim of WP 2 is to evaluate whether proposed online interventions to support families reduce anxiety and stress.

Research publication:

COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions

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