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A hospital can be a scary place for any child and their family, but for a child with autism or an intellectual disability it can be even more traumatic. Children can be overwhelmed by noises, bright lights, unfamiliar things and people.

Through years of working with children with behaviour and communication difficulties and seeing the barriers these children face during their hospital stay, RCH nurse Emily Cull was inspired to create an innovative new tool which is now being utilised hospital wide.

Thanks to funding provided by the Auxiliaries Legacy Fund, Emily designed a ‘Behaviour Support Profile’ (BSP) which allows nurses, doctors and allied health staff to document the non-medical needs of children being treated at the RCH.

The BSP asks a series of questions about the best way to communicate with the child: sensory triggers, things that the child likes and dislikes, strengths and abilities, calming strategies, behaviours of concern and information about their previous hospital visits. The BSP, which was created in consultation with parents and caregivers, was designed to enhance the child’s experience whilst in hospital and ensure they are as settled as possible. The BSP has been built into the Electronic Medical Record so it is accessible by everyone on the relevant child’s treatment team.

“The idea is that we may spend a little extra time at the start talking to families and gathering information about the child but the tool will save time in the long run. It’s not rocket science, but in the past there is nowhere formally to document children’s non-medical needs and I was finding nurses were writing amazing notes that either weren’t being read or were lost. This tool provides a place to document the child’s needs and also saves parents time as they don’t need to be repeating themselves every day,” said Emily.

The BSP was initially designed for children with autism, anxiety disorders and intellectual disability. However Emily found that after trialling a paper-based version of the BSP across the Cockatoo, Kelpie and Sugar Glider Wards, she received feedback from other nursing staff who felt this could benefit a broader range of patients.

“Since testing the BSP on a number of wards I had nurses who would come up to me and say ‘I’ve got this patient who is non-verbal or has cerebral palsy’ so the behaviour side of things isn’t relevant but the communication side of things is, or another nurse who was talking about one of her oncology patients who has severe anxiety and some behaviours of concern, so it can ideally be used for anyone,” Emily said.

Whenever possible, parents will be contacted prior to their child being admitted to hospital and the BSP will be filled out in advance so the medical team can see what the child’s specific needs are.

“The BSP works best when we know beforehand that the child is coming into hospital so we can arrange staffing and other things we need to take into consideration. Normally the ratio is four children to one nurse, but in some instances you need the ratio to be two to one or one on one; with this tool you can assess ahead of time whether the child has anxiety or behavioural concerns that may impact their admission,” Emily said.

“There is a major focus on providing holistic care to children at the RCH, however this can only happen if the focus includes the non-medical needs of our patients as well. The future of children’s health needs to treat the patient based on their individual needs, not just their diagnosis and this tool allows us to do that.”

Feedback from parents has been overwhelmingly positive as the tool has reduced the stress of a hospital stay, not only for the child but also for their family.

Verbal and written feedback from grateful parents includes; ‘you should use this tool for all patients like my son, this is just as important as his medical history’ and ‘the staff are now becoming more aware of my daughter’s needs and are responding and coordinating her needs to a much higher level – a great relief to us.’

The funding provided by the Auxiliaries Legacy Fund made Emily’s vision a reality, something she believes wouldn’t have been possible otherwise.

“This funding allowed me to have protected time each week to work on the BSP, to meet with parents and families and to trial it, which wouldn’t have been possible without the funding. It also ensured it was implemented much quicker – it would have taken a lot longer, if at all to this extent, so I am immensely grateful.”