Involving children with developmental language disorder and their parents in research priority setting
Katie Chadd, Royal College of Speech and Language Therapists, UK (firstname.lastname@example.org )
Amit Kulkarni, Royal College of Speech and Language Therapists, UK (email@example.com)
Lauren Longhurst, Whittington Health NHS Trust, UK (firstname.lastname@example.org)
Background: In the UK, two children in every classroom have developmental language disorder (DLD), a disorder associated with a range of negative life outcomes, including poorer mental health, educational attainment and employment prospects. Speech and language therapists (SLTs) support children with DLD (CwDLD), using research to inform their practice. However, important clinical questions regarding DLD remain unanswered. Research priority setting partnerships (PSPs) aim to address such situations, asking key stakeholders to consider what questions most urgently need to be addressed by research. Involving CwDLD and their parents, as key stakeholders, in a DLD PSP is crucial. Typical PSP methods are linguistically and cognitively complex, thus an adapted methodology is required to capture the true voice of CwDLD and their parents.
Aim: To develop and implement a method for meaningfully involving CwDLD and their parents in a PSP.
Method: An activity programme and data collection exercise to aid CwDLD and their parents to participate in a PSP were developed. SLTs familiar with the individuals were trained to deliver and implement this, according to an individual’s specific communication needs. Collected data were used to inform the research design. A protocol was developed to combine this data with information from other stakeholders.
Results: Nine SLTs received training, 17 CwDLD and 25 parents participated. All 42 individuals were able to voice their preferences for DLD research priorities. This information influenced the next stage of the PSP process, and had a significant impact on which research questions were prioritised.
Conclusions: This novel method enables CwDLD and their parents to be meaningfully involved in PSPs. Having established DLD research priorities, created in partnership, means future research can be targeted to areas of most urgent need. This supports the evidence base to grow appropriately to inform on child-centred, evidence-based care and facilitate positive outcomes for children.
Implications for children: You are able to tell people what you find difficult about speaking and understanding and what you really want help with. You have the right to do this, and we really want to know! Your speech and language therapist can help you do this, and together we can try to find the best ways to help any child who finds speaking and listening a bit tricky.
Implications for families: Using the process described here, you and your child can (and should be) involved in sharing your opinions and preferences for what you think are priority areas for research in DLD. Your collective voice is not just important, it is imperative in identifying what questions about DLD we most urgently need to try to answer.
Implications for practitioners: Speech and language therapists are best placed to support children and their parents to voice their opinions on research priorities in DLD. You can use the process described here to facilitate their understanding and capability to express their preference, and collect meaningful data.
Key words: developmental language disorder, speech and language therapy, research priority setting, children’s voices, families’ voices, communication, education, health, policy, government, mixed-methods
This presentation relates to the following United Nations Sustainable Development Goals: