Informed choice - Scotland research (2024)
This research by Gwen Carr looks at how families experience informed choice and how this impacts the decisions that they make on language and communication.
The research was based in Scotland but the findings will be of interest to professionals across the UK.
The importance of informed choice is a key principle for the National Deaf Children’s Society. We believe that parents should have access to comprehensive, unbiased and evidence-based information to help them make the right choices for their child.
However, parents often tell us that their experience of informed choice on the ground is not always positive. This research sought to help us better understand why this is.
The research team gathered insights from over 50 parents of deaf children, along with 30 professionals from various fields who work with deaf children.
While the report is based on the experiences of families in Scotland, its findings are relevant across the UK.
Key findings
Positive experiences and challenges in support
- Many families spoke positively about the support they received. Professionals also emphasised the importance of being family-led in their approach.
- However, not all parents were informed about available support, and most felt the information provided was insufficient.
- Some families struggled to find the right support on their own, often feeling it was down to luck.
Barriers to informed choice
- Professionals aim to be family-led in how they share information, but several parents wanted more guidance. Many parents didn’t know the right questions to ask, making informed decision-making difficult.
- Limited availability of certain support options (for example, sign language or Auditory Verbal Therapy) may have influenced how professionals presented information.
Assumptions and challenges faced by professionals
- Some professionals may have assumed families' language preferences (for example, assuming spoken language if a family already communicates orally). While this doesn’t mean sign language information was withheld, it may have influenced how it was presented.
- Professionals found it challenging to judge when and how to share information, particularly if they felt that families might be feeling overwhelmed with other challenges.
The need for first-hand experiences
- Both families and professionals highlighted the importance of experiencing different communication options first-hand, such as meeting deaf professionals, to make informed choices.
Report recommendations
The report provides several recommendations to address these challenges, including:
- enhancing awareness of quality standards in Scotland to ensure clarity on the support that should be available for language and communication in the early years
- reviewing and improving local support, ensuring families can easily access information about the services available in their area
- ensuring all families are informed about the resources and support offered by the National Deaf Children’s Society
What happens next?
We’ll be sharing the report as widely as possible – in Scotland and across the rest of the UK too. We’ll be asking professionals to read the report and reflect on how they engage with families.
Informed choice, language and communication are central to our work. As part of our Every Moment Counts strategy, we’ll explore extra steps we can take – such as improving our website, strengthening our engagement with local communities, and enhancing our training for professionals.