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

Abstract

A protocol for involving individuals presenting with developmental language disorder (DLD) (iDLD) and their parents/carers (iDLDPC) in a research priority setting exercise is presented. iDLD have difficulties with communication skills, such as understanding language, word-finding and discourse. Such difficulties mean existing research priority setting protocols are difficult for iDLD to access, since they require sophisticated communication skills. Thus, a novel protocol for involving iDLD in these exercises is warranted. The same protocol is recommended for use with iDLDPC, to ensure accessibility. The protocol is presented in 4 steps. Step 1 describes a program of activities delivered by trained, specialist DLD speech and language therapists (SLTs) that prepares iDLD/iDLDPC for involvement. Step 2 outlines an approach to elicit iDLD/iDLDPC's opinions on research priorities. Steps 3 and 4 describe methods to analyze and integrate this data at multiple stages of the research priority setting process. 9 trained specialist DLD SLTs delivered steps 1 and 2. 17 iDLDs and 25 iDLDPCs consented to involvement. Opinions from all participants were elicited, and this data was used to influence the process and output of the exercise. An advantage of this protocol is its accommodation of the heterogeneity in support needs of iDLD/iDLDPC, through a menu of options, whilst also providing a structured framework. Due to the novelty of the protocol, the methods for data integration were developed by the research group. These are potential limitations of the protocol, and may bring the reliability and validity under scrutiny, which are yet to be tested. This protocol enables meaningful involvement of iDLD/iDLDPC in research priority setting and could be utilized for people with other kinds of speech, language or communication needs. Further research should evaluate the effectiveness of the protocol and whether it can be adapted for involvement of such populations in other research studies. 16. Similarly, the James Lind Alliance Priority Setting Partnership (JLA PSP) approach 17 , which upholds itself on inclusion of all patient voices, would still present challenges for iDLD. The JLA PSP methodology utilizes Nominal Group Technique, requiring participants to independently 'brainstorm' ideas, verbally express and then discuss them 18. It is reasonable to assume the extent of meaningful involvement of iDLD/iDLDPC may be limited when using these approaches to research priority setting.

Research priorities to improve the health of children and adults with dysphagia: a National Institute of Health Research and Royal College of Speech and Language Therapists research priority setting partnership

“… 52 Alternatively, a modified ranking activity and data integration method to increase accessibility of the exercise to patients and the public could be implemented. 39 Following a recent evaluation of the overall project by the steering group, many of these and other ideas will be incorporated into future RCSLT PSPs. For example, training SLTs in identifying and supporting patients on their caseloads to participate at every stage of the priority-setting, from design to dissemination.…”

“…This, along with ensuring a greater representation of patients/carers, should be considered when planning future PSPs 52. Alternatively, a modified ranking activity and data integration method to increase accessibility of the exercise to patients and the public could be implemented 39. Following a recent evaluation of the overall project by the steering group, many of these and other ideas will be incorporated into future RCSLT PSPs.…”

“…36 A similar approach involving multiple stakeholders has been taken recently to determine priorities for broad areas of speech and language therapy research within public health services in Australia 37 and in specific clinical areas of practice within speech and language therapy, for example, aphasia following stroke 38 and developmental language disorder. 39 Drawing from JLA methodology and expertise from the NIHR, our aim was to carry out a UK-wide research priority setting partnership to identify crucial unanswered questions in dysphagia and make the case for future research that would impact patients/carers and health professionals working in this field. Many people with dysphagia have additional challenges in participating in research priority setting due to co-occurring communication needs.…”

“…In the UK, the James Lind Alliance (JLA) has been instrumental in developing transparent methodology for research priority setting partnerships (PSPs) with patient, carer and clinician involvement, the results of which have successfully influenced funders 36. A similar approach involving multiple stakeholders has been taken recently to determine priorities for broad areas of speech and language therapy research within public health services in Australia37 and in specific clinical areas of practice within speech and language therapy, for example, aphasia following stroke38 and developmental language disorder 39. Drawing from JLA methodology and expertise from the NIHR, our aim was to carry out a UK-wide research priority setting partnership to identify crucial unanswered questions in dysphagia and make the case for future research that would impact patients/carers and health professionals working in this field.…”

Setting a prioritized agenda to drive speech–language therapy research in health

“…The authors identified a broad range of aphasia‐related issues including treatment effectiveness, therapy timing and intensity, assessment and management of depression in people with aphasia, the impact of trained volunteers and carers on communication, and the effects of communication aids (Franklin et al 2018). Currently, in the UK, the RCSLT is undertaking a prioritization study with children with developmental language delay, their parents/carers and specialist SLTs (Chadd and Kulkarni 2020).…”