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Read MoreResearch looks for ‘lost voices’ in young people
“Children and young adults’ communication techniques and the ways that they connect with their world have improved,” Diane.
Diane Nicholson, a Sister in our Children and Young Adults Service has delivered novel research looking at the use of Augmented and Alternative Communication (AAC) techniques and how they can enhance the care of young people in a hospice setting.
84% of children and young adults who come to St Oswald’s Hospice for short breaks present communication challenges – with most being non-verbal.
AAC techniques include:
A way of visually communicating using hand gestures, facial expressions and body language. Those in the UK use British Sign Language (BSL)
PECS (Picture Exchange Communications Systems) teaches expressive communication skills with picture cards.
Makaton is the combination of picture symbols and hand gestures that are similar to British Sign Language and speech.
An Eye Gaze device enables users to access hands free communication without body movements. Cameras and sensors detect small changes in the pupils of the eye.
Through a mixed-method approach that included one-to-one interviews with nurses and allied healthcare professionals, Diane demonstrated clear benefits of multi-disciplinary care teams using AAC techniques with young people at the hospice.
She found that spending time getting to know the individual was critical to successfully communicating with non-verbal children and young adults.
Diane also found that training and a positive culture of AAC techniques created an environment where children and young adults felt more comfortable communicating in the ways that best suited them.
12-year-old Aaron has complex health needs and learning difficulties. He has been attending short breaks at St Oswald’s Hospice Children and Young Adults Service for the last 10 years.
According to mum, Elaine, while Aaron can say some words, his vocabulary is very limited and he is classed as non-verbal. He primarily uses Makaton to communicate with his care team at school and during his stays at St Oswald’s Hospice.
Elaine said: “Aaron is taught Makaton at school and that learning continues when he’s at St Oswald’s Hospice.
“Aaron tends to put a little extra twist on the Makaton signs so it is important people spend time with him to understand these.
“The team at St Oswald’s Hospice know Aaron so well. They understand when he’s happy or if he’s upset or has a pain through the signs he can make and his facial expressions.
“If there’s anything they’re not sure of, they’ll always ask me. They’ll say ‘he’s doing this sign or movement a lot, do you know what that means?’ They’re always looking to get a gain better knowledge of what he’s trying to get at.”
“The team do a great job with Aaron and I’m very confident leaving him at the hospice for his overnight stays knowing they understand him.”
Here is a video with Aaron and Lauren, Sensory Support at St Oswald’s Hospice, using Makaton:
The Finding Lost Voices project was funded by NIHR Applied Research Collaboration (ARC) North East and North Cumbia after Diane won a Practice Fellowship in 2022.
Sue Jackson, Associate Professor in Nursing, Midwifery and Health at Northumbria University also provided mentorship and guidance to Diane throughout her research.
Since publishing her findings, Diane – who joined St Oswald’s Hospice when our Children’s Hospice opened in 2003 – has been invited to speak at several high-profile conferences about the benefits of multi-disciplinary care teams using AAC techniques with young people.
Diane is also now conducting a wider review of the available resources and potential barriers to delivering AAC techniques in healthcare settings.
She is also sharing her findings with paediatric and learning disability student nurses at Northumbria University.
Diane said: “With more complex medical interventions and improved medications available leading to improved access to education and therapies, the needs of young people are changing for the better.
“Consequently, children and young adults’ communications techniques and ways that they connect with their world have improved too.
“It’s essential that everyone involved in the care of children and young adults is equipped with the right tools to be able to communicate as effectively as possible with each individual to ensure they achieve their best quality of life.”
Simon Gordon, Director of Strategy and Development at St Oswald’s Hospice, added:
“Diane’s research, with the guidance of Sue Jackson at Northumbria University, has provided important insights into the advantages of using AAC techniques in the ever-changing care needs of children and young adults with progressive life-limiting conditions.
“It’s great that Diane is sharing her findings with the wider healthcare community. At the hospice, we are also looking closely at her research to see how we can maximise the use of AAC techniques and enhance the excellent care we provide young people in our Children and Young Adults Service.”
“Finding Lost Voices is just one example of a range of research projects St Oswald’s Hospice is currently leading on or contributing to as we deliver our commitment to help, develop, adapt and improve palliative and end of life care services through evidence-based research.”
For more information, please visit the Finding Lost Voices project page.