The July #ReSNetSLT journal club on Wednesday 28th July at 7:30-8:30 pm will be supported by Milly Heelan @Heelan_phd and @RCSLTResearch student Hope Kightley from Leeds Becket University and will focus on the RCSLT‘s research priority setting work.
Information on the RCSLT‘s research priority setting work that has been completed so far can be found here: https://www.rcslt.org/members/research/research-priorities/.
Don’t miss the NEW RCSLT report on research priorities for learning disabilities released this week: https://www.rcslt.org/members/research/research-priorities/#section-3
The open access paper for this month’s #ReSNetSLT discussion will be:
Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting (Chadd, Kulkarni, Longhurst, 2020).
And can be accessed here: https://pubmed.ncbi.nlm.nih.gov/32568234/
Hope has provided a summary of the paper here and questions to guide the discussion . We look forward to you joining using #ReSNetSLT.
What is Developmental Language Disorder (DLD)?
What is a Priority Setting Project?
Priority setting projects aim to engage service users, carers, clinicians, and researchers in identifying areas requiring more research. Researchers can identify gaps in the literature, whilst service users can bring perspectives based on their unique lived experiences.
Project Aim
The aim of this project was to devise and use a protocol to effectively include service users with DLD in research priority setting.
Why is this research important?
DLD became an official diagnosis in 2016 based on the CATALYSE paper (Bishop et al, 2016), which was a delphi consensus to agree upon the terminology used for identifying language impairments in children. This makes DLD a relatively new terminology.
As with many areas of SLT, there are many gaps in our knowledge regarding the evidence base for speech and language therapy and DLD. It is therefore important to identify these gaps to determine areas of research priority.
Priority Setting Partnerships (PSPs) enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research.
To follow the NHS imperative of public patient involvement (PPI), and address the disconnect between academics, clinicians, and service users, it is important to gather individuals with DLD (iDLD’s) perspectives on what they believe research should focus on.
Previously published approaches aimed at the inclusion of service users in research priority setting are not suitable for this study, due to the high demands on communication skills, which can be challenging for iDLD.
The protocol
The protocol presented in this paper is split into 4 stages:
In depth explanations of each stage of the protocol, and the resources used in step 1 and step 2 are available within the article.
Steps 1 and 2 were administered by SLTs (band 6 or above) with a specialism in DLD.
Their relationship with clients, and their clinical expertise was relied upon to ensure the iDLD’s involvement was meaningful and reliable.
Areas of research priority were identified by researchers prior to the meeting with iDLD’s, to focus the priority options to areas with a lacking evidence base; a total of 11 areas were highlighted.
The 11 topics included: Identification, assessment, bilingualism, intervention, service delivery- primary school, service delivery- secondary school, service delivery- adult, lifelong impact, technology, working with others, raising awareness.
Findings
There was no clear preference of priority topics identified by iDLD from stage 2, meaning that no topics could be eliminated as a non-priority.
Therefore, all 11 topics were taken to the next stage of the protocol.
The data collected from stage 2 was combined with research priority setting survey data, to identify the top 10 research priorities.
A table is included in the paper showing the research priorities ranking based upon survey data, and how these shifted when including the priorities of iDLD.
Discussion
This protocol was a novel approach to incorporating the views of iDLD and their carers into a research priority exercise.
It is recognised that modifications and amendments could be made to improve on the protocol, such as spending more time ensuring iDLD had understanding of key concepts such as ‘research’ and ‘priorities’ during the preparatory activities.
There is a gap in the research as to how to include those with communication difficulties in PPI, so it is hoped that this paper can provide a framework for future research and promote the inclusion of a variety of service users in research priority setting.
Questions to structure our tweet chat
- What is your experience of including iDLD or SLCN in the design or development of research and or clinical services?
- What other areas of SLCN do you think this protocol, or elements from this protocol, could be applied to?
Could any of the activities be adapted to use in your practice? - How do you balance the importance of standardizing the protocol and its reliability, with meeting the varying needs of individuals to access the protocol?
- The RCSLT have identified ‘top 10’ research priorities in dysphagia, learning disabilities and language disorders in children.
Do you recognise any areas of need for further research within your clinical domain?
How could you incorporate the RCSLT’s top 10’s into your practice?