We would like to thank all the children, young people, parents, and carers who participated in our survey, and the Scope team for their advice and distribution of this survey.

In this survey of 95 parents and children and young people with additional needs, there was support for using the ECHILD database for research, with respondents most positive about use by research from universities, government, and charities.

The three most important research priorities were related to community child health services, GPs health care, and mental health care for children with additional needs.

Findings from this survey will help shape the use of ECHILD for research, policy, and practice.  The full report is available here.

In this session we talked with 18 children and young people (aged 14-22 years) who are part of the GOSH Young Person’s Advisory Group (YPAG) for research about using the ECHILD database to understand stress and mental health in secondary schools in England.  We shared research on hospital admissions with stress-related presentations such as physical symptoms without a medical cause (e.g. tummy pain, fainting), self-harm, mental health presentations (e.g. anxiety, depression) and externalising behaviours (drug use, disruptive behaviours). We asked the YPAG about how they thought schools could be sources of stress for pupils, and about how schools could better support pupils. We also asked about using ECHILD to understand mental health in families, including how a child's mental health could affect their parent or sibling's health.

What did we learn? 

Schools

• Important sources of school stress were social/friendship groups and tests/exams. For example, some pupils have exams that count towards their final grade every week, causing constant stress.

• Some schools have implemented their own ways of monitoring pupil mental health, including polls or surveys via Teams or email. Anonymous polls can be a discreet and helpful approach for monitoring class or school wellbeing.

• Loneliness (particularly during the pandemic) can exacerbate stress, and conversely, having someone in school you trust to talk to can help reduce stress

• Whole school approaches such as assemblies or posters can be helpful for managing stress, as can support from designated roles such as counsellors or wellbeing officers

Families

• Mental health affects whole families not just individuals

• Family and parent culture are important for how mental health and stress is perceived

• Children may try to hide their mental health difficulties from their family to avoid creating more stress for their parents and siblings

• Sometimes it can be hard for parents to understand the stresses that children and young people face, as these can be quite different to parent concerns
   

We ran a series of four sessions with children and young people (GOSH Yound People Advisory Group and HOPE Children and Young People Stakeholder Group), and parents and carer groups (GOSH Parent and Carer Advisory Group and HOPE Parents and Carers Stakeholder Group). These sessions explored what these groups thought about deriving household groupings for individuals already included in the ECHILD database through linkage to encrypted unique property reference number (UPRN).  This linkage would group together individuals who live at the same address at the same point in time.  

What we learnt:
The patient groups that we spoke with were generally supportive of additional linkages to allow household groups to be analysed together. 

Key priorities across the groups included research into parent/carer health, especially for single parents/carers, and research on family mental health.  
Young people and parents/carers see schools as instrumental in supporting the health and wellbeing of pupils and their families. The role of schools is particularly important for issues that may be hidden or non-medical, for example for children who have a sibling with a long-term health condition, or children with caring responsibilities.

However, there were important areas of caution. 

No Information Gaps: it is essential to provide transparent and accessible information about what data is available to whom, for what purpose, and the many layers of protection safeguarding the data.

Data Quality: each of the groups identified important limitations of the data for understanding, these included concerns about the need to examine holistic education and outcomes (e.g. being well enough to attend school, rather than just outcomes like grades).

Lack of information on household income: ECHILD does not currently include data on employment, income or benefits. Parent/carer groups emphasised the challenges of combining caring responsibilities and work, highlighted the value in data and research that considers household income and benefits.