For many families, especially those with neurodivergent children, a hospital visit can be filled with uncertainty, anxiety, and invisible barriers. We wanted to understand this experience more deeply, so we asked caregivers directly.
We surveyed 158 caregivers across the UK to explore whether, and how, the needs of neurodiverse (ND) children differ from their neurotypical (NT) peers within hospital settings. Over half (64%) of caregivers identified their child as having a suspected diagnosis ND. The insights we gathered provide valuable information on the challenges ND children face and helped to identify key needs.
Our survey results confirm what’s been seen previously in research: ND children are more likely to struggle with anxiety in healthcare settings. Our data found that ND children are three times more likely to experience anxiety in their everyday life, and are two times more likely to experience procedural anxiety compared to NT children. Caregivers reported that their child’s high stress levels mainly occurred before (47%) and during (32%) the procedure. A proportion of children even continued to experience anxiety (17%) after the procedure. This suggests anticipatory anxiety is a major factor and this heightened emotional baseline can make even routine healthcare visits potentially distressing and lead to negative outcomes after the procedure too.
The survey also demonstrated a disproportionate burden on ND families. ND children were almost twice as likely to have undergone a hospital procedure (76% vs 38%) and were five times more likely to have visited multiple times (46% of ND attending more than once vs 9% of NT). These findings reflect a higher level of healthcare interaction, and potential strain, among ND families. This higher rate of interaction with healthcare services is likely to compound the stress and emotional burden for families, yet their unique needs often go unmet.
The hospital environment itself had unique challenges. Results found that ND children are significantly more likely to face challenges within the hospital environment. Long waiting times was identified as the most common challenge, affecting 75% of ND children.
This theme was echoed in the open-text responses, where caregivers highlighted reduced waiting times as an important factor in improving the overall experience, particularly to ease stress and maintain children’s comfort.
“The wait times [...] were extremely long which for a young child is terrible as they are already frightened […] then having to wait a long time in a crowded space makes this much worse.”
Caregivers also discussed the need for having more information and knowing what to expect; caregivers wanted earlier, clearer communication about the procedure and the structure of the day.
“They could provide as much information as possible about what kind of tests they will perform and anything relevant that could put my child at ease.”
Caregivers thought it was essential to also have a calming, friendly environment, in terms of both the physical setting and interactions with staff, to help reduce anxiety for children and caregivers alike. 60% of ND caregivers reported that having a welcoming healthcare environment was helpful to their child.
Feeling valued and listened to emerged as a strong theme from many caregivers, highlighting the need for more empathetic, person-centred care. Caregivers also stressed the need to be with their child during procedures to provide comfort and a calming presence. Overall, these findings suggest a clear need for a more transparent, supportive, and responsive hospital experience, particularly for families of ND children.
Additionally, over a third (40%) of ND caregivers thought that the needs of their child were not met within a healthcare setting (compared to 10% of NT caregivers). Of those caregivers, 66% felt as though ‘There wasn't much I could do’, when their child's neurodivergent needs were not adequately addressed in hospital. Furthermore, over half (52%) of caregivers reported they had expressed concerns to healthcare professionals.
When asked what key information caregivers would like to know before visiting a healthcare setting, the top three priorities for all caregivers were:
Knowing this information would also help caregivers prepare their child for their upcoming appointment and aide in discussions about the upcoming procedures.
When discussing an upcoming health procedure with their child, caregivers described a thoughtful and sensitive approach. Many emphasised the importance of being open and honest, aiming to build trust and reduce fear by not withholding information. A common difficulty was finding the ‘right’ timing’; sharing details not so far in advance that it caused prolonged anxiety, but early enough to allow the child to mentally prepare.
Caregivers also focused on clearly describing what would happen during the appointment in age-appropriate language, helping their child feel more in control and less fearful. Explaining the benefits and reasons behind the procedure was also highlighted as important to help children understand the purpose and importance of what they were about to experience. These responses show how caregivers try to balance clarity and reassurance, tailoring their communication to support their child emotionally and cognitively, as well as helping to give their child a sense of predictability, agency, and sense of calmness.
Despite the challenges, caregivers were able to adapt and bring their own strategies to help their child. Children tended to enjoy playing games on a tablet or phone, playing with peers, and receiving rewards such as stickers. Caregivers also highlighted other enjoyable distractions for their child included listening to music and watching TV, all of which helped create moments of comfort and normalcy in an otherwise clinical setting.
Taken together, these findings, as well as previous research from our team (see our white paper, Voices Unheard: Parents of Autistic Children in Paediatric Care), provide valuable insights on the needs of caregivers and children, particularly those who are neurodiverse, within a healthcare setting.
The experiences shared by caregivers, alongside research into healthcare challenges for neurodivergent children, highlight a system that often struggles to provide equitable, accessible, and effective care. While efforts have been made to improve understanding and accommodations, many families still face significant barriers.
Too often, digital tools or hospital services are designed for the majority, with accessibility bolted on afterward. From the start, Little Journey has been designed to be accessible and engaging for both neurodiverse and neurotypical children. This has meant co-creating with families, building features that respect different ways of engaging, and thorough testing with both neurodiverse and neurotypical children. Read more about our accessibility commitments.
The Little Journey app aims to empower families to feel prepared for their healthcare procedures and help to normalise the hospital environment. With key information, caregivers can experience increased confidence to advocate for their children, feel less uncertainty around appointments, and have tools to help manage their child’s anxiety and provide distractions.
Launching in the UK on 28th August 2025
Our newest innovation, 'A Little About Me' is a digital module that uses engaging quizzes to gather information from children and caregivers about their communication needs, preferences, and possible triggers before a hospital visit. A personalised care profile report is then automatically generated for healthcare professionals, to help them build rapport and tailor their approach, making reasonable accommodations to deliver more effective and efficient care.
A Little About Me care profiles offer a centralised and scalable solution for providing personalised paediatric care in hospitals. Co-created with neurodivergent children and healthcare professionals, and funded by The LEGO Foundation, the module has undergone extensive testing to ensure it resonates with children and their families while aligning with the practical needs and workflows of healthcare providers - fostering mutual understanding and advocacy
This is just the beginning. As we continue to listen, learn, and evolve alongside the families and clinicians we support, our goal remains clear: a healthcare system that is created for the needs of ALL children, rather than expecting them to adapt to it. This, overall, will improve healthcare experiences for all families.