Parents group

This specialist parent group meeting facilitated by the The Children & Young People’s Cancer Association took place online. Six parents attended the session, who had children that were diagnosed with cancer under the age of 16 years.

The aim of the session was to introduce the research project to investigate the educational and long-term health outcomes of childhood cancer survivors, introduce the ECHILD database and the parents’ thoughts on our study plans.

What we learnt from the session:

·       There is a lack of support for parents in navigating the complex education systems for their children, and a lack of support from local authority.

·       Parents felt medical trauma, emotional well-being and late affects (from treatment) rarely acknowledged or accommodated.

·       Returning to education post-treatment or changing schools were traumatic for children and unsupported.

We met twice with the young persons group facilitated by the Young Lives vs Cancer charity. The first session took place in April 2025 where 8 young people attended. The second meeting took place in July 2025 where 7 young people attended.

The aim of the first session was to introduce everyone and hear about what research priorities are important for the lives of young people. We briefly introduced the study entitled Education and longer-term health outcomes for childhood cancer survivors. Based on session 1, we focused our research on key educational outcome time-points. This lead to the aim of session 2 to explain the ECHILD linked education and health data and to get input into our research plans.

From the two sessions, we learnt:

•            Depending on stage of education for the young person, return to education was challenging due to the system viewing their treatment period as coming to an end and expecting them to continue with education without much support.  

•            Support was dependent on teachers and individuals, rather than standard practice in how to support someone returning to education post cancer diagnosis and treatment.

•            The young people inputted into our analysis plan. 

We welcomed 6 participants to the second young person panel meeting for the Children and Families Policy Research Unit (CPRU). We ran an icebreaker activity with all in attendance to get to know each other. We each shared three words that described ourselves, see end of the notes for all our words together and what we bring to CPRU. We shared the guidelines and structure for the meeting.

‍ Updates and shaping the CPRU young person panel – You Said, We Will feedback:

1.      You said you want to give your insights into diverse research topics and support new research projects across the unit.
We will make sure the panel is invited to share views on a range of research projects, and your ideas are included in project planning and decision-making.

2.      You said you want experience working with researchers.
We will provide opportunities for you to engage with researchers during the panel.‍ ‍

3.      You said you would like to chair meetings, take notes, write blog posts, create materials for young people, and present research.
We will offer informal training and support so you can take on these roles and activities, and help you share your work in ways that feel comfortable and meaningful to you.

4.      You said you are interested in topics such as mental health, support for families experiencing difficulties, equality, universal credit, and stem cell research.
We will bring projects on these topics to the panel wherever possible. Current projects link to mental health and support for families. Equality runs through all of our projects, during discussions we will try and focus on how to reduce inequalities for families and young people. If we don’t undertake research on a specific topic, we will share research or opportunities going on in other institutions that may be of interest to you wherever possible (e.g. universal credit and STEM cell research).

5.      You said you think the panel should meet every 2 months for up to 2 hours and be small and welcoming but grow over time.
We will set up regular meetings every other month and create a warm, inclusive space, gradually inviting more young people to join. We will provide you with choices on dates and ask you what you would like to cover in future meetings.

6.      You said it matters that you can make a difference for families and young people, see how projects change because of your ideas, and receive updates on the projects you support.
We will give regular feedback showing how your input has influenced projects, and keep you updated on progress and outcomes.

7.      You said the benefits to you are gaining experience and recognition and learning from researchers.
We will provide certificates, references, and opportunities to add to your CV, as well as access to learning opportunities.

Project: Families with high use and costs of services

Hayley led a session on one of CPRU’s core projects: Health, education and social care use and costs across the life course for children with additional or high needs. The aim of this project is to understand opportunities for more effective integration of these services and how early support for children might prevent later high-resource use. Hayley gave an overview of the project and shared some findings, along with feedback from parents involved in other activities.

Hayley asked for thoughts on 1) what doesn’t work well between education, health and social care services for families, 2) what early support might be helpful, and 3) how we should frame the topic, including the language we use.

1.      Where and how do things not work well between education, health and social care? What changes could make a difference?

You told us that help all comes at once and this can be overwhelming for children and young people. This may happen because young people know that if they are waiting for mental health support, it will take a long time and there is no guarantee of receiving support. You thought this can lead to young people contacting multiple organisations, to maximise their chance of getting some support. As a result, help from services may come all at once, which can be overwhelming.

You told us that it would be better if services could communicate and made sure support was given more consistently. You said that if there was a guarantee that young people would receive help from one organisation in a reasonable length of time, they also might not need to reach out to as many different services. You also said it was important to have localised services and to know what is available in your area.

2.      What early support might reduce higher use of SEND services, health and social care later in life?

You told us that more self-help skills could be taught to help young people support themselves, navigate different stressors and improve coping.

You thought the idea of support in schools was good but felt it should be subtle so that young people aren’t differentiated from other students. You said that sometimes, support can increase bullying and send the message that this child is different or receiving more help than others. You also said that other young people in the class may not understand or be sensitive. You thought help in schools should be well-timed and ideally not remove the young person from lunch and social opportunities, also education but the emphasis was on minimising the extent to which support introduces social exclusion.

3.      How should we frame this topic? What language might avoid stigmatisation and emphasise potential benefits?

You felt that the topic (of education, health and social care) is a bit broad and vague. It would help to specify examples of each service (we gave examples of Educational Psychologist services, Speech and Language Therapy, GP, CAMHS, Counsellors, Physiotherapy). You highlighted that there may be high stigma in some cultures and language should therefore be generalised. This means that young people (and parents in particular) might be more receptive to language that describes rather than labels young people. For example, “if your child is anxious…” rather than, “if your child has anxiety”. Using descriptives could encourage young people to reach out sooner and overcome labels/resistance. Direct labels situate the problem as something intrinsic about a young person, rather than something that they are currently experiencing.

Project: Access to mental health services

Kate and Helen led a session on another one of CPRU’s core projects: Access to services related to adolescent mental health. The aim of this project is to understand whether mental health services are more accessible for some teenagers than others. Kate and Helen gave an overview of the project and shared some findings with you (see slides 21-29 for this section of the meeting, and below for an overview).

Reasons to explain the results

The researchers asked you if you could think of reasons why some groups have low or high levels of contacts for mental health compared to others. Your responses focussed on explaining the different results among young people from different ethnic groups:

·       You remarked that these results seem to reflect collectivist and individualist cultures

·       You said that age may be an important factor to consider in terms of cultural influence. Parents likely have more input into the healthcare of their children when they are young but this may change as their children grow older especially for 16-18 year old.

·       Another factor that could play a role in why mental health may be higher in some groups versus others was physical illness factors. You said this could differ among ethnic groups due to differences in genetics and environmental exposures like pollution

·       You also said that ethnicity and other characteristics of the GP may influence how they perceive the young people that come to see them. You said that having a GP with a similar background could be helpful to improve access for some young people.

Details you wanted the researchers to clarify

You also asked the researchers two questions about the research. You asked whether underlying need differed by ethnicity. The researchers said that, yes, underlying need does differ by ethnicity for many different reasons. They also said that this is a big problem with doing research on this topic. It’s difficult to separate inequalities in underlying need from inequalities in accessing services. The next stage of the research from Bradford aims to do this and we will present these results to you at another session.

You also asked the research what they are doing with the results. They said that the national results (from ECHILD) describe broad patterns across many groups. These results could lead to further in-depth research on specific groups that have particularly high or low referrals to mental health services. Both researchers said that they will use these results to write up research papers for publication.

Based on these questions, Kate and Helen have realised that they need to make these points clearer in future presentations and other outputs. Thank you! ‍

Imagery used in the presentation

You commented that the symbol used to indicate the mental health services dataset (a head with puzzle pieces) could be seen as offensive. You said that it is historically linked to autism but rejected by a lot of the neurodiverse community as a symbol of deficiency/something lacking. Kate is thankful for this feedback and has shared your comment with the wider research (ECHILD) team. Due to your comment, the team have decided to stop using this symbol.

Words describing us

Cassey shared a word cloud of all the words we used to describe ourselves at the beginning of the meeting. She then talked about what these words show we bring to CPRU:

We’ve got the drive and commitment to get things done, the warmth and empathy to connect to each other and the families we work with, and the creativity and curiosity to spark new ideas. We’re not just serious and capable, we’re also fun and approachable too. ‍

Close, questions and feedback

We then ended the meeting, collecting feedback via email, and a plan to hold the next meeting in October. A couple of you stayed back to ask the researchers further questions and provide additional insights.

If you would like to add to these notes or share further insights, then please email: [email protected] ‍

If you would like to get involved in helping chair or plan the next young person panel meeting then please do reach out to Cassey on the above email.