Amplifying underrepresented voices: Using composite narratives to explore children’s lived experiences of mental health services in England

Could you tell me more about your research and, in particular, how composite narratives have featured within this?

My PhD is a mixed methods design. There is a quantitative mental health provider survey exploring clinicians’ knowledge, confidence and skills when delivering mental health interventions to autistic children and young people and young people with intellectual disabilities.

I also conducted focus groups with “system-level stakeholders” – commissioners, operational leads, policy writers, and people in headship – across education and social care, to explore how decisions are made and how these decisions affect access to CAMHS for autistic children and young people and young people with intellectual disabilities.

Alongside the surveys and focus groups, I also conducted narrative interviews with autistic children and young people and young people with intellectual disabilities and with parents and carers. From this work, I developed composite narratives, which is the method I really wanted to focus on here.

The starting point for me was finding a way to provide a platform where people with lived experience could share their experiences uninterrupted. Narrative interviews felt like the appropriate option for that aim. They’re not new as a method, but they aligned well with the group I wanted to learn from. While narrative interviews worked well with parents and carers, I had to think carefully about how to use narrative approaches with children who have differences in communication. It was really important to remove the communication barriers that often exist in research and allow children to share their stories in ways that suited them.

I interviewed parents first so I could understand the child before meeting them – things like triggers, communication preferences, when breaks were needed, and what reasonable adjustments were required.

Many parents were doubtful that meaningful research data could be gathered from their children, particularly if their child was non-speaking or had significant communication differences. But for me, even if a child only contributed a few minutes, their voice still mattered.

Drawing on my clinical experience, I used story stems. This is an evidence-based approach used with young children, where you provide scaffolding to allow them to tell the story. The children were given the same instruction to start: “I’ll tell you the story, and then you tell me what happens next”. Story stems were introduced: the first sign of mental distress, asking for help, going to see the helper, this provided structure for each child.

We then used play materials – Lego, Playmobil figures, animals, Jenga – whatever the child chose, and the child then created a story through play. The characters represented them indirectly, using made-up names, and the story allowed them to communicate experiences of mental distress, an abstract concept, but using a concrete approach.

Although I interviewed parents separately, I was able to later compare the children’s stories with parental narratives. Even though the children used play and fictional characters, their stories closely mirrored what parents had described. That convergence helped confirm the narratives shared by children.

From these narrative interviews, I developed composite narratives. Composite narratives are used more widely in education and policy but are relatively new in mental health research. They involve weaving together multiple participants’ stories into a single first-person or third-person narrative that represents shared experiences while protecting anonymity.

Anonymity was critical in my research. I was working with a small number of families in a specific geographical area, and the stories were detailed and distinctive. Some children were adopted, and families had legitimate concerns about being identifiable. Composite narratives allowed the experiences to be shared without placing individuals at risk.

I followed Olivia Johnston’s (2024) six steps for creating composite narratives.

For example, firstly, I worked on the individual narratives by ‘smoothing’ out the story, I shared the ‘smoothed story’ with parents to check they were accurate representations of their narrative interviews with me, and made changes where needed.

Secondly, I used NVivo to identify themes and group quotes from the narratives (parents or child smoothed stories) – like the first stages of thematic analysis. For example, where parents spoke about barriers to accessing services, I grouped those barriers together.

Thirdly, I selected a main quote that shared rich information, I then went a step further and wove these themes into a narrative structure with an introduction, middle sections, and a conclusion.

Finally, parents of the narratives that were a part of the merged stories then reviewed the composite narrative to confirm they still felt it to be true to their experiences.

In the end, each composite was around 500 words for parent composite narratives and 250 words for children’s composite narratives, condensed from approximately 19 pages of material.

Did this involve working in interdisciplinary ways?

Yes, across my wider doctoral research project an interdisciplinary approach was essential. Access to CAMHS is shaped not just by health services, but by education, social care, policy and lives experience.

Throughout, I worked with lived experience partners as well as professionals from CAMHS, education and social care. One of the key outputs of this work was a co-produced piece that brought together perspectives from lived experience (PPI members) and professional practice to identify how mental health services could better support neurodivergent children and young people. This work has been published on open science framework (OSF) and is being shared widely.

The lived experience partners I collaborate with would like to develop a policy brief and submit it to the UK Parliament. One of the ideas we’ve discussed is including a composite narrative in that brief – so that system-level stakeholders can engage directly with lived experience, supported by a clear policy “ask”.

Composite narratives work particularly well here because they present experiences in a concise, impactful way. They allow readers to quickly grasp what is happening and why it matters, without losing complexity.

Your works seems to address a range of issues relating to social justice. Could you tell me more about this aspect of your work?

At its core, this research is about social justice. It’s about amplifying the voices of people who are underrepresented in research and often marginalised in clinical practice – particularly children and young people who struggle to access mainstream mental health services. Much of the existing research focuses on parents’ experiences or clinicians’ perspectives. There is far less research that captures the voices of children, especially those who are non-speaking or communicate differently.

The story stem method was used with children during this study to specifically address this gap. It’s about recognising that children may communicate experiences in ways we’re not used to, but that those experiences are still valid and valuable.

To support this, I trained in Makaton, Story Stem Assessment Profile and Talking Mats so that I could better understand and cater to diverse communication needs. I also worked closely with parents, who could interpret where needed.

The study was designed thoughtfully and carefully to ensure that autistic children and young people and young people with intellectual disabilities and their parents felt respected and that their involvement was meaningful.

As part of the children’s participation information sheet, I designed and created a social story about taking part in mental health research, which could be read or watched as a video, this is now available for other researchers to use.

Children sometimes took part with their pets present.

One child whose story contributed to a composite narrative was diagnosed with selective mutism; her contribution was entirely nonverbal, but she was still able to tell a story.

At the end, children received a certificate of participation and a small bag of fidgets as a thank you, to show that their contribution was valued.

How did your personal identity and positionality shape the way you used this method?

My background is in social work, special and inclusive education and mental health, after around 18 years in practice I approach research through a social constructivist lens – understanding experiences through systems, relationships and social contexts.

I was also very aware of my own positionality. I am a late-diagnosed autistic woman, also diagnosed with ADHD. That brings insight, but it also means I needed to be reflexive about how my experiences might shape the research.

I kept reflective logs before and after interviews – what expectations I had, how the interview affected me, and what stood out. These reflections helped me check my biases and assumptions during analysis.

Emotionally, the work could be demanding. I was accountable to my supervisors and discussed openly how the research was affecting me and how I was managing that.

Transparency with families was important. I shared that I work in CAMHS so families did not feel misled, particularly as I might represent systems that had failed them.

Interviews were conducted over three sessions, with time between each, allowing space for reflection on both sides.

On reflection, I was not shocked by many of the stories due to my clinical and personal experience, but it could still be difficult to see people becoming distressed while sharing experiences that were ongoing and unresolved. Some participants described the interviews as cathartic. My role was to hold space rather than to intervene therapeutically.

Narrative interviews allowed them to tell their story from the beginning to the present, rather than focusing only on a current crisis.

The opportunity to consolidate their experiences felt meaningful for many families.

If someone were to use this method for the first time, what advice would you give them?

My advice would be to keep an audit trail, reflective diary and remain open to the story as it actually is, rather than what you expect it to be.

As an insider, it was particularly striking when parts of the data did not align with the narratives I was familiar with. Those outliers are still valuable. In composite narratives, they can function as narrative foils – elements that disrupt linear storytelling and make the narrative more representative.

No one’s life is linear.

Composite does not mean smoothing everything out. It means representing layers of complexity ethically and honestly, while protecting participants.

Being open, reflexive, and respectful of difference is essential.

References

Johnston, O. (2024). Constructing Composite Narratives: A Step-By-Step Guide for Researchers in the Social Sciences (1st ed.). Routledge. https://doi.org/10.4324/9781003424475