How we’ve involved the voice of children and young people

Read in detail about our methodology for working with children and young people on this project

Children and young people’s voice is at the heart of everything we do at RCPCH. Guided by the United Nations Convention on the Rights of the Child, we support children and young people to have their voices heard in decisions that affect them (Article 12) and work with them to help shape services so they have the best healthcare possible (Article 24).

The RCPCH &Us network brings together children, young people up to the age of 25, their parents/carers and families to work with clinicians, decision makers and each other to educate, collaborate, engage and change to improve health services and child health outcomes.

To support voice across the Paediatrics2040 programme, a mixed methods approach was developed, working with a diverse group of children, young people and parents/carers/advocates across the UK. RCPCH &Us has an established diversity model underpinning its work, ensuring children and young people from a variety of experiences are engaged.

This includes different groups:

  • ‘Universal’ groups such as open access provision – schools, youth centres, play groups
  • ‘Targeted’ groups including condition focused forums, special schools, groups with different experiences such as care experienced, mental health service users
  • ‘Specialist’ voices where children and young people have paediatric services experience [1]

Children and young people from were involved across the four nations, considering rural and urban locations, primary, secondary and tertiary care settings, schools, charities, local authority programmes, national and regional forums and more.

A rights based approach, supporting children and young people in their personal journey to work collectively through solution focused thinking, drives our engagement and participation methodologies.[2]

The RCPCH Children and Young People’s Engagement team holds the professional qualification in youth and community development work. The values of this method of working include free choice for children and young people to engage, respect, developing children and young people’s skills and attitudes, working within their view of the world, supporting development of stronger relationships and collective identities, valuing difference and promoting their voices.

What did we do?

A multi layered engagement plan was developed which worked across three phases;

Phase one

This included a series of consultations with all three diversity cohorts asking the question “what knowledge, skills and attitudes do doctors need when working with children and young people ”. These sessions were delivered to groups of all ages, as well in 1:1 conversations with hospital patients with over 3000 + ideas shared.

Quantitative analysis methodology

The phase one data raw data was reviewed by a research assistant using thematic analysis, coding and theming all responses, refining with the Paediatrics 2040 programme lead and Children and Young People’s Engagement Manager. This process resulted in 9 recurring themes being identified which you can read about in the data section.

Data was also themed according to context e.g. a response that may have been sorted into systemic change may have been placed into youth-friendly services due to the responses of the previous points.

Qualitative analysis methodology

Raw data was reviewed, and data extracted according to the following variables using the grounded theory approach:

  • Population:
    • Marginalized experiences
    • Long term condition experience
  • Future thinking

You can read about in the data section.

Phase two

This phase was created due to the unexpected turn of events with the global Coronavirus pandemic. In May 2020, young people from across all 4 nations took part in virtual sessions exploring their experiences accessing health care, receiving COVID-19 information and hopes for the future. The results were reviewed using grounded theory by both the research assistant and engagement manager in the Children and Young People’s engagement team. The themes, narratives  and data were incorporated into the report: Reimagining the future of paediatric care post-COVID-19 – a reflective report of rapid learning.

Phase three

This phase brought young people aged 13-19 in four virtual nation sessions. In these sessions the groups looked at their nation data from children and young people alongside the UK wide data, before prioritising topics and creating recommendations across the four work streams.

  • Mental health
  • Good medical conduct
  • Non-judgmental/ open-minded
  • Respectful, kind, supportive, friendly

Dissemination

Young people were involved in developing how they wanted their findings to be shared. A number of sessions focused on forming a ‘youth author’ team, where they reviewed all phases and sessions data, and further refined the findings to create their “#VoiceMatters” chapter.  They knew that the full results were being shared through the data section on the digital report, so wanted to highlight three areas that were of most importance to them and relevance to having the best paediatric services in 2040.

They identified three priority areas: the impact of COVID-19 on Mental Health, about Working with Us (children and young people) looking at skills, approach and style, and Mental Health for all (pre-pandemic). The youth authors wanted to create infographics for each topic that explained the key findings and ideas for the future, so that teams and services could print out and keep as a reminder.

They also wrote their own article about their experiences that featured in the RCPCH Member’s magazine Milestones, (Spring 2021) and along with other RCPCH &Us members, created a video to summarise their findings that can be used in presentations, training sessions or at events.

We are incredibly proud of the involvement and engagement of children, young people and their families across the last 2 years, supporting the development of their data set and #VoiceMatters section, as well as informing other reports and the thinking of the Paediatrics 2040 Working Group.

If you would like to find out more about the work of RCPCH &Us, contact and_us@rcpch.ac.uk.

References

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(1)

Sparrow, E & Linney, M (20200) ‘RCPCH & Us: Improving healthcare through engagement’ in Brady, L-M. (eds.), Embedding Young People’s Participation in Health Services: New Approaches. 1st ed., Bristol University Press.

(2)

UNICEF. Becoming an UNICEF child friendly city or community [webpage] https://www.unicef.org.uk/child-friendly-cities/child-rights-based-approach/

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