Diane’s research goes global

Diane Nicholson, a Senior Sister in the Children and Young Adults Service at St Oswald’s Hospice, was invited to share her pioneering research on Augmentative and Alternative Communication (AAC) techniques at the 17th International Family Nursing Conference (IFNC17) in Perth, Australia.

The research project, titled ‘Finding Lost Voices’, which explored how AAC can enhance the care of young people in a hospice setting, is gaining global recognition for its impact on improving communication for non-verbal children and young adults.

With 94% of children and young adults who visit St Oswald’s Hospice for respite care experiencing communication challenges – most being non-verbal, Diane’s research investigated the use of AAC techniques such as sign language, picture aids, Makaton and Eye Gazer technology.

Through her research, Diane was able to demonstrate clear benefits of multi-disciplinary care teams using a range of AAC to communicate with young people in the Children and Young Adults Service at the hospice.

She found that spending time getting to know the individual was critical, while a positive culture around AAC created an environment where young people felt more comfortable communicating in the ways that best suited them.

The research recommended that hospices and other healthcare settings need strong leadership around AAC and a tailored improvement plan that provides guidance, support, and training on how and when to use different communication types.

Teams should also work closely with the families of non-verbal children to discuss and share ideas and ensure methods used are suitable and individualised. By doing so, care teams can ensure non-verbal young voices are heard and not misunderstood.

Finding Lost Voices was funded by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria, following Diane’s receipt of a prestigious Practice Fellowship in 2022.

The Senior Sister also received expert mentorship and guidance from Dr Sue Jackson, Associate Professor in Nursing, Midwifery, and Health at Northumbria University, throughout the project.

Since the Finding Young Voices’ report was published, Diane has been invited to share her findings with healthcare professionals at several prestigious conferences and events including the Palliative Care People Learning Difficulties (PCPLD) Network and the Research for Children’s Hospice Group (RiCH) National Group. She will also present her research at the Celebrating Children and Young People’s Nursing Conference 2025 at Northumbria University in September.

The IFNC17 represents the furthest the research has reached geographically.

While Diane couldn’t attend the Australian event in person, information and findings from her research were on display throughout the 4-day conference, which took place June 17-20 and attracted leading experts and innovators in family nursing.

Diane said:

“It was an honour to be asked to share the findings of the Finding Lost Voices research at the IFNC17 conference.

“What’s evident is that there is a universal need to better understand the voices of those who, until now, have not been heard”.

Simon Gordon, Director of Strategy and Development at St Oswald’s Hospice, added:

“It’s extremely encouraging that Diane has been invited to share her findings at an international conference. It shows that through our commitment to research at St Oswald’s Hospice, and by partnering with others, we have the ability to influence and change palliative and end-of-life care for people around the world.”

For more information, please visit the Finding Lost Voices project page.