Families navigating paediatric health pathways
When a child needs care across multiple services, parents don't just support their child - they become de facto care coordinators for a system that wasn't designed to coordinate itself.
Fragmented systems, invisible burden
Families supporting children with complex health conditions often navigate healthcare systems involving multiple services, organisations, and providers. A child with a complex or long-term condition may be seen by primary care, specialist outpatient services, community health teams, therapy services, and social care - each with its own referral processes, communication systems, and administrative requirements.
From the perspective of any individual service, coordination is someone else's responsibility. From the perspective of a family, coordination is an unacknowledged second job. Parents become experts in their child's condition, advocates in clinical environments where they may feel out of their depth, and administrators of information flows that the system doesn't manage on their behalf.
This research set out to understand what that experience actually involves - the specific points where the system created friction, confusion, and emotional cost - so that Mid Yorkshire NHS Trust could begin to address it from an informed position.
Following the journey from diagnosis through ongoing care
Participation Studio recruited parents and carers who were actively navigating paediatric healthcare pathways - people with direct, current experience of coordinating care across services. Recruitment was designed to reach families across different types of complexity, different stages of their child's care journey, and different family circumstances.
In-person research workshops brought these families together to map and explore their experiences. Healthcare journey mapping was used as a structured method for externalising the path through services - not just the clinical milestones, but the communications, the waiting periods, the administrative touchpoints, and the moments where clarity or coordination was absent when it was most needed.
Facilitated discussion alongside the journey mapping allowed participants to articulate not just what happened, but how it felt - the anxiety of waiting for referrals, the frustration of repeating the same information to different services, the specific moments where they felt genuinely supported and why those stood out against the norm.
What the research involved
What the research revealed
The emotional and logistical burden placed on families was not an inevitable consequence of complex care - it was substantially amplified by communication gaps and unclear pathways that were within the system's capacity to address.
The research revealed the complexity of coordinating care across multiple services with clarity and specificity. It wasn't simply that services didn't talk to each other - it was that families couldn't predict when information would be shared, couldn't rely on information being accurate when it was, and had no clear point of contact when something fell through the gap.
Communication gaps emerged as a dominant theme across almost all participants. Discharge letters that hadn't arrived before the follow-up appointment. Referrals that had been made but not acknowledged. Contradictory information from different services about the same aspect of care. The accumulation of these small failures created a background level of anxiety that families described carrying constantly.
Unclear pathways created a particular form of burden: the labour of figuring out what came next, who was responsible for it, and what the family needed to do to make it happen. Many participants had learned to anticipate gaps and build in redundancy - chasing referrals before they expected them to arrive, keeping detailed records, asking questions they shouldn't have needed to ask. This expertise came at a cost.
Informing service coordination
Insights from the study informed conversations within Mid Yorkshire NHS Trust around improving service coordination and patient and family experience within paediatric healthcare pathways.
By documenting the specific friction points in the family experience - with the specificity that only direct accounts can provide - the research gave the Trust a grounded basis for identifying where coordination improvements would have the greatest impact on families.
We fully recognise the effort your team invested in recruitment, moderation, and analysis, and we genuinely appreciate the quality of the discussions and reporting.
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