Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

This protocol provides a way of meaningfully including individuals with a developmental language disorder, who are often at risk of exclusion in research priority setting exercises. This approach uniquely embeds flexibility and responsivity into the core of an individual's needs, ensuring meaningful input to various stages of the PSP process and increasing the validity of the gathered information. To consolidate and teach the key concept of speech and language therapy, inform the individual with DLD that the activity will be focused on describing what speech and language therapy is.

To facilitate a discussion about speech and language therapy using a game format, ask the individual with DLD to pass around a rewarding object and explain that when the participant is holding the object, they should try to tell something about speech and language therapy. Alternatively, to facilitate a discussion about speech and language therapy using a discussion format, ask the individual with DLD what they understand about the terms speech and language therapist"or therapy. Provide the individual with DLD with additional ideas as illustrated.

And using the appropriate pictures, explain that, Your speech and language therapist might help you with your talking, or, Speech and language therapy might help you learn new words in school. To consolidate and teach the key concept of research, inform the individual with DLD that the next activity will be for learning about the word research. To facilitate a discussion on the question, What does research mean?

using the visual as appropriate, describe what research means at the appropriate level of detail. Next, either present this visual to the participant to facilitate an explanation of research and explain, We are told about research in the news or similar, or present sample headlines about research and explain, Here are some headlines about research. Explain to the individual with DLD that the main focus of the session will be to think about research about DLD.

To consolidate and teach the key concept of priority, inform the individual with DLD that the next activity will involve thinking about what a priority is. Give the individual with DLD this visual and ask, What does it mean if something is a priority? Describe the meaning of priority at the appropriate level of detail, and provide a second visual to evoke decision-making on what is a priority and what is important to the individual with DLD.

Indicating the activities depicted in the visual, ask the individual with DLD to indicate which activities they consider to be a priority. Then ask the individual with DLD to discuss some of the priorities in their own life. To facilitate a discussion on what it means to be a research priority, ask the individual with DLD whether they consider any of the sample research headlines to be a priority.

Then ask the individual with DLD to think about their research priorities. Throughout the session, be sure to help the individual with DLD with understanding the topics and with selecting their ratings, especially when making comparisons between two or more topics. Inform the individual with DLD that the next activity will focus on the areas of DLD that they think are the most important to study, and present the potential topics to the individual with DLD on note cards.

explain each topic to the individual with DLD to facilitate an understanding as necessary. If appropriate, use the visual to help describe what identification means. After considering what identification means in the context of DLD, represent the scale and explain that these numbers can be used to show how important or how much of a priority something is.

Then present the topic cards again, and ask the individual with DLD how important they think it is to find out more about each topic and to rate the importance on the priority scale. When all of the topics have been rated, confirm their decisions by talking through the ratings of each topic and provide an opportunity for them to make any changes. At the end of the analysis, present the individual with DLD with a certificate of participation and record their data.

The data obtained in the sessions can be successfully used to influence the next stage of the research priority setting exercise. For example, in this analysis, the range was small and no clear delineation of priority topics was evident. Therefore, all 11 topics were taken to the next stage.

Corrector values can be calculated for each defined research area based on the individual with DLD data and can be applied to the survey data. The data transformation has a substantial impact on the final output. It is important to remember that the discussion steps are not prescriptive and should be delivered by an SLT expert using differentiated instruction and supports, such as visuals, signs, and symbols.

This procedure can be adapted to facilitate the involvement of individuals with DLD in more research and the involvement of populations with other kinds of communication difficulties in research priority exercises. The co-production of research priority development allows new questions to be explored. This protocol can also be replicated to develop more research priorities in other clinical areas.