Improving the hospital experience for patients with intellectual disabilities

For a child, coming to the hospital can be a daunting process but for children and young people who have an intellectual disability, it can be even more an even more challenging experience. Across SCHN, almost 14% of admissions are for children and young people with intellectual disabilities. 

SCHN Clinical Governance Unit Quality Officer and Sydney Partnership for Health, Education, Research and Enterprise (SPHERE) Research Fellow, Laurel Mimmo, is working with two young people, 22-year-old Matthew and 18-year-old Maya, who have intellectual disability, to learn about participatory research methods for her PhD project. 

With a background in paediatric nursing and having volunteered in holiday programs for children with intellectual disability during her teenage years, Laurel has always had a passion for working with children who live with intellectual disability. Aligning with an inclusive research approach, over six training workshops Matthew and Maya developed research skills such as interviewing by asking questions, using photovoice and body mapping techniques. Since completing their training, Matthew and Maya have worked with Laurel when analysing data and communicating findings through co-presentations, planning and co-authoring a co-design study, and life skills such as decision-making and teamwork.   

“Whilst Matthew has been involved in the co-researcher training, he has learnt various research skills and developed confidence to express his thoughts and experiences within the hospital system. We saw Matthew’s contributions throughout the workshops develop. He became increasingly involved in expressing his thoughts - whether verbally or through drawing or craft activities,” said Matthew’s mother, Debbie.


 “The insight and lessons we can learn from taking the time to explore the hospital and healthcare experiences of children with intellectual disabilities will improve not only the safety and quality of care we deliver but also the experience for the hundreds of children like Maya and Matt who present to hospitals across NSW every month,” said Maya’s mother, Karen. 

Both Matthew and Maya are paid for their research work with Laurel and are supported in having time to consider and give their options.

 During the training workshops, Laurel also learnt useful methods to interview a child or young person with intellectual disability about their experience in hospital and in turn, intends to co-design a patient experience tool with and for children and young people with intellectual disability to inform targeted interventions that will improve quality of care for this group, with ensuing benefits for all children who are admitted to hospital.

“In doing the workshops, I learnt time and space was needed to support children and young people with intellectual disability to take part in research and quality improvement activities, liaising with their parents to learn how to ask questions differently and I learnt when we needed to schedule in breaks. I had to build trust with Maya, Matthew and their parents and get to know them before they could even feel comfortable in talking to me,” said Laurel. 

Matthew said, “Going to the workshops to work with Laurel was fun and we learnt to tell people what we liked and didn’t like in hospital.”

 Maya said that at the workshops she learnt, “Listening to people is important because you can learn new things.”

 Laurel also emphasises how important it is to establish partnerships with parents and has developed a conceptual model of safe care that takes into account both the parents and the nurses views of a good experience of hospital. Once interviews with inpatient children and young people with intellectual disability are completed – on hold due to the current Covid outbreak – Laurel will incorporate their perspectives into the model as well.

 “It’s about getting to know the child’s needs, adapting and negotiating care with the child and their parent, sharing what you learn with your colleagues; essentially treating each child or young person with an intellectual disability as a human being. I think we do this well as individuals, but not consistently as a system. Many children with intellectual disability, and their families, have had bad experiences in the past so making sure every experience for them is a positive one is really, really important,” said Laurel.  

“One parent said to me once, 'I remember you because you treated my daughter like a human being'. I was shocked and saddened that this was so memorable after several years! "

On Friday 10 September, Matthew and Maya alongside Laurel, Debbie and Karen, shared their experiences of training to be co-researchers on Laurel’s project at the BMJ International Forum on Quality and Safety in Healthcare Australasia as well as share their tips and learnings for others interested in co-researcher training with young people with intellectual disability. 

“Presenting at the conference was good. I told people about the workshops and about me," said Matthew. 

“Presenting at the conference was fun," said Maya.

 A recording of the presentation will soon be available on the conference Quality Safety Forum YouTube page