Lead applicant: Anne-Sophie Darlington

Co-applicants: Professor Graham Roberts, Professor Mary Barker, Dr Ivo Vassilev University of Southampton, Dr Catherine Hill Associate Professor in Child Health at the University of Southampton, Dr Jana Kreppner Associate Professor in Developmental Psychopathology within Psychology at the University of Southampton, Dr Luise Marino​, Abigail Oakley

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Project Summary:

Mental health conditions and symptoms in children and young people are increasing. Children and young people (CYP) with a chronic physical health condition often report having mental health problems such as feelings of anxiety and depression. A lot of research has focused on risk – circumstances that make it more likely for young people to experience mental health problems. In this project we want to focus on resilience -  the young person’s ability to use their strengths and support from family and friends to overcome challenges in their life.

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Resilience has not often been a focus of support programmes for CYP with a physical condition. We would like to find out what experiences are common for young people living with physical health conditions, so that we can develop a support programme that applies across Child Health. We will use knowledge from these shared experiences to co-create the support programme with young people – called ‘tools for life’ (suggestion by CYP). We will also partner with national charities (partnerships have already been developed) who have worked with us before and who are very interested in supporting CYP around their mental health. The charity partners could help us to develop support components that are very specific to the condition (for example, fear of cancer coming back), which can be included in the overall support programme. Finally, work with young people has taught us that flexibility is very important: flexibility in when they access support, the way they access it and how it is offered to them. We will work together with young to shape this flexibility in support.

The project will have four parts:

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Part 1 – Finding out what might work: List successful support components from 15 existing summaries of the evidence (reviews of the literature) to date and a report from Wellcome (an independent global charitable foundation which focuses on research), and identify the support elements (e.g., building confidence) which work well, and are acceptable to young people.

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Part 2 – Developing partnerships: Develop a partnership with local stakeholders (e.g., Paul Hughes and Laura Renishaw-Villier – Hub stakeholders; SolentMind, No Limits) and national charities (e.g., Children’s Cancer and Leukaemia Group, Kidney Care UK, Asthma UK). who can support the development of the support programme, both the general as disease-specific elements. We will hold several workshops with stakeholders to develop the partnership and agree on the goals of the partnership and ways to work together. 

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Part 3 – Developing the support programme: We will co-create (develop together with young people) the support programme– ‘tools for life’ - to increase resilience. We will focus on flexibility in the way the programme is offered to young people, and when young people access the programme, to suit their needs. This flexibility will make young people more likely to use the programme.

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Part 4: Testing the support programme: We will test the support programme with 30 young people, to find out how many young people use the programme, if the programme is acceptable, how they use the programme, and how much they use the programme. We will also find out what the most important indicators of success are for the programme, such as young people experiencing less symptoms of anxiety and depression, and a better quality of life.

What did we find out?

The problem: Children and young people with a physical health condition are at a higher risk of developing mental health problems. Existing support programmes do not focus on building resilience – the ability to bounce back and stay mentally strong by using available resources and support networks when facing challenges. Also, many programmes fail to keep young people engaged. This project aimed to explore the support needs of young people and the best way to deliver a programme that builds resilience.

What we did: We reviewed existing support programmes from the literature. Then we interviewed young people (32 with a physical health condition, and 25 without, ages 11-18 years), 12 parents of young people aged 11-17 years, and 5 healthcare providers from hospitals, charities and schools across the UK. A range of health conditions were represented, including cancer, heart disease, type 1 diabetes, and asthma. The interviews explored key stressors young people face, the support they need, and preferences for how support should be delivered.

What we found: Priority stressors were related to managing the health condition, school/social life, and the future. Key support strategies identified included: 1) Normalisation through connection with other young people (e.g. chat forums), peer training (e.g. ‘living with a health condition’ in school curriculum); 2) Coping, including practical methods (e.g. knowing what to expect during hospital visits), and skills for navigating changes in peer relationships; 3) Prompt reassurance from healthcare providers during hospital visits, via text messaging service, and access to youth workers. Participants preferred a flexible approach that combined online resources with in-person support.

Potential impact: Based on our findings, we have developed a prototype support programme that combines online resources with access to healthcare providers for timely reassurance and problem-solving. We are now seeking feedback from young people on this prototype and will use their input to create a full-scale version. If the support programme proves effective, it could help improve the mental health of young people with a physical health condition.

What is the impact of this knowledge?

•Relationship building: We established strong links with key stakeholders, including clinical colleagues across paediatric specialties at University Hospital Southampton (UHS), representatives from Hampshire and Isle of Wight ICB, Dorset HealthCare, and national and regional disease charities. These collaborations supported participant recruitment and informed intervention development. In the long-term, these relationships will be crucial in ensuring the widespread implementation of the intervention across the health and care system.

•Embedding of EDI and PPIE: We conducted extensive PPIE work with community groups, including Winchester Youth Council, Breakout Youth, and Yellow Brick Road, ensuring that the voices of children and young people (CYP) from diverse backgrounds, including those from the LGBTQIA+ community and socioeconomically disadvantaged areas, were represented in the study.

•Empowerment of young people: CYP gained a strong sense of empowerment and an enhanced awareness of their own resilience and well-being while contributing to the study. This impact was far-reaching, as the study included patients from UHS paediatric units, and students from local schools (Toynbee and Applemore) and colleges (Eastleigh College and Sparsholt College).

•Novel insights into well-being: This study provided novel insights into resilience and well-being for CYP, enriching the broader narrative on CYP mental health. We also co-developed several prototype intervention proposals, which will pave the way for creating an intervention to improve resilience and mental health for young people within healthcare settings.

What Next

•We are currently:

• seeking feedback from young people on the prototype resilience intervention

• preparing a manuscript for submission to a high-impact a peer-reviewed journal.

The findings from this study will be inform the development of a grant application, aimed at co-creating the full-scale resilience intervention with input from young people and their support networks. If the intervention proves effective, it will be implemented in practice to bolster mental health outcomes for young people with a physical chronic condition, while also reducing the burden on health and social care services.