Deaf children share insights on what researchers should study next

A team of parents, young people and professionals compile a list of the ‘Top 10’ most important research questions

Deaf children and people with experience of childhood deafness from across the UK have come together to highlight what matters most to children affected by deafness and hearing loss, as part of a project funded by the National Deaf Children’s Society and the National Institute for Health and Care Research (NIHR). 

The aim was to create a top 10 from both deaf children and adults (young people, families and health and education professionals). The team used what’s known as a James Lind Alliance (JLA) priority-setting process to ensure the robustness of the project. The project was led by The University of Manchester in conjunction with researchers from Aston University and Lancaster University. The hope is that it will ultimately lead to more research into childhood deafness, in the specific areas it’s needed most.

Several hundred respondents contributed to the project through a series of online surveys. Children were involved through activity-based focus groups. Respondents submitted over 1,200 ideas for research questions in the initial surveys.

These were summarised into a list of 59 unique questions, and a second survey was used to prioritise the questions. The top 21 questions were then taken to two final full-day workshop where participants collaborated to choose their top 10 priorities.

Children highlighted the potential impact of them ‘missing out’ on things happening around them when interacting with their peers as their top priority, demonstrating the importance of social development for deaf children.

Family relationships and educational needs ranked as high priorities for both adults and children, coming in the top 3 for both groups.

Adults ranked educational needs as number 1, highlighting the importance of supporting deaf children in schools, particularly those with additional needs. 

Other important areas for research included understanding what support is needed for children with mild and unilateral deafness, the impact of language deprivation on deaf children and how deaf children can be supported to understand their deafness and become empowered to advocate for themselves as they grow up into deaf adults.

Participants reported feeling valued as part of the project and satisfied that their feedback is reflected in the final lists. One of the children who took part in the workshop said:

“I learnt that my voice matters and I can make a difference for me and other deaf children.”

The full list of priorities can be found at: childdeafnessresearch.co.uk

A BSL summary (with captions) of the Childhood Deafness Research Network is available below.

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