Name: involving individuals with developmental language disorder and their parents/carers in research priority setting
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Description: Watch this Scientific Journal Video about Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting at JoVE.com

The RCSLT would like to acknowledge the Research Priorities working group and DLD work stream for their involvement and support in developing and carrying out the program of activities with iDLD and assisting with data collection. The RCSLT would also like to extend acknowledgement and gratitude to all individuals who participated in the sessions and gave their views on research priorities for DLD.&#160;We would also like to sincerely thank Blossom House School staff and students for their participation in and facilitation of the filming of the video accompanying this article.

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J., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Adapting+the+James+Lind+Alliance+priority+setting+process+to+better+support+patient+participation:+an+example+from+cystic+fibrosis.">Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis.</a> Res Involv Engagem. 5 (24), (2019).</li><li>Chalmers, I., Atkinson, P., Fenton, M., Firkins, L., Crowe, S., Cowan, K. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Tackling+treatment+uncertainties+together:+the+evolution+of+the+James+Lind+Initiative+(JLI),+2003-2013.">Tackling treatment uncertainties together: the evolution of the James Lind Initiative (JLI), 2003-2013.</a> J R Soc Med. 106 (12), 482-491 (2013).</li><li>Crowe, S., Fenton, M., Hall, M., Cowan, K., Chalmers, I. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Patients',+clinicians'+and+the+research+communities'+priorities+for+treatment+research:+there+is+an+important+mismatch.">Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch.</a> Res Involvem Engagem. 1 (2), (2015).</li><li>Tallon, D., Chard, J., Dieppe, P. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Relation+between+agendas+of+the+research+community+and+the+research+consumer.">Relation between agendas of the research community and the research consumer.</a> Lancet. 335, 2037-2040 (2000).</li><li>Madden, M., Morley, R. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Exploring+the+challenge+of+health+research+priority+setting+in+partnership:+reflections+on+the+methodology+used+by+the+James+Lind+Alliance+Pressure+Ulcer+Priority+Setting+Partnership.">Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership.</a> Res Involv Engagem. 2 (12), (2016).</li><li>. NHS England's Research Needs Assessment 2018 by Strategy and Innovation Directorate Available from: <a target="_blank" href="https://www.england.nhs.uk/wp-content/uploads/2018/09/nhs-englands-research-needs-assessment-2018.pdf">https://www.england.nhs.uk/wp-content/uploads/2018/09/nhs-englands-research-needs-assessment-2018.pdf</a> (2020)</li><li>Elberse, J. E., Pittens, C. A., de Cock Buning, T., Broerse, J. E. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Patient+involvement+in+a+scientific+advisory+process:+setting+the+research+agenda+for+medical+products.">Patient involvement in a scientific advisory process: setting the research agenda for medical products.</a> Health Policy. 107, 231-242 (2012).</li><li>Harvey, N., Holmes, C. A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Nominal+group+technique:+An+effective+method+for+obtaining+group+consensus.">Nominal group technique: An effective method for obtaining group consensus.</a> Int J Nurs Pract. 18 (2), 188-194 (2012).</li><li>Fourie, R., Crowley, N., Oliviera, A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=A+Qualitative+Exploration+of+Therapeutic+Relationships+from+the+Perspective+of+Six+Children+Receiving+Speech-Language+Therapy.">A Qualitative Exploration of Therapeutic Relationships from the Perspective of Six Children Receiving Speech-Language Therapy.</a> Top Lang Disord. 31 (4), 310-324 (2011).</li><li>Snape, D., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Exploring+perceived+barriers,+drivers,+impacts+and+the+need+for+evaluation+of+public+involvement+in+health+and+social+care+research:+a+modified+Delphi+study.">Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study.</a> BMJ Open. 4 (6), 004943 (2014).</li><li>Morris, C., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Setting+research+priorities+to+improve+the+health+of+children+and+young+people+with+neurodisability:+a+British+Academy+of+Childhood+Disability-James+Lind+Alliance+Research+Priority+Setting+Partnership.">Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership.</a> BMJ open. 5 (1), (2015).</li><li>Pollock, A., St. George, B., Fenton, M., Crowe, S., Firkins, L. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Development+of+a+new+model+to+engage+patients+and+clinicians+in+setting+research+priorities.">Development of a new model to engage patients and clinicians in setting research priorities.</a> J Health Serv Res Policy. 19 (1), 12-18 (2014).</li><li>. RCSLT Position Paper: Inclusive communication and the role of speech and language therapy Available from: <a target="_blank" href="https://www.rcslt.org/members/delivering-quality-services/inclusive-communication/inclusive-communication-guidance#section-8">https://www.rcslt.org/members/delivering-quality-services/inclusive-communication/inclusive-communication-guidance#section-8</a> (2020)</li><li>Mander, C. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> The triangle of accessibility. Communication and Intellectual Disability Course Notes. , (2009).</li><li>. Royal College of Speech and Language Therapists. Research Priorities Available from: <a target="_blank" href="https://www.rcslt.org/members/research/research-priorities">https://www.rcslt.org/members/research/research-priorities</a> (2020)</li><li>Archibald, L. M. D. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Working+memory+and+language+learning:+A+review.">Working memory and language learning: A review.</a> Child Lang Teach Ther. 33 (1), 5-17 (2017).</li><li>Henry, L. A., Botting, N. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Working+memory+and+developmental+language+impairments.">Working memory and developmental language impairments.</a> Child Lang Teach Ther. 33 (1), 19-32 (2017).</li><li>Sowerbutts, A., Finer, A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> DLD and Me: Supporting Children and Young People with Developmental Language Disorder. , (2019).</li><li>Socol, Y., Shaki, Y. Y., Yanovskiy, M. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Interests,+Bias,+and+Consensus+in+Science+and+Regulation.">Interests, Bias, and Consensus in Science and Regulation.</a> Dose-Responnse. , (2019).</li><li>. Briefing notes for researchers: involving the public in NHS, public health and social care research Available from: <a target="_blank" href="https://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf">https://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf</a> (2020)</li><li>. UK standards for Public Involvement Available from: <a target="_blank" href="https://drive.google.com/file/d/1U-IJNJCfFepaAOruEhzz1TdLvAcHTt2Q/view">https://drive.google.com/file/d/1U-IJNJCfFepaAOruEhzz1TdLvAcHTt2Q/view</a> (2020)</li><li>Bunning, K., Steel, G. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Self-concept+in+young+adult+with+a+learning+disability+from+the+Jewish+community.">Self-concept in young adult with a learning disability from the Jewish community.</a> Br. J. Learn. Disabil. 35 (1), 43-49 (2007).</li><li>. Good Practice for Payment and Recognition Available from: <a target="_blank" href="https://www.invo.org.uk/good-practice-for-payment-and-recognition-things-to-consider/">https://www.invo.org.uk/good-practice-for-payment-and-recognition-things-to-consider/</a> (2020)</li><li>Gray-Burrows, K. A., Willis, T. A., Foy, R., Rathfelder, M., Bland, P., Chin, A., Hodgson, S., Ibegbuna, G., Prestwich, G., Samuel, K., Wood, L., Yaqoob, F., McEachan, R. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Role+of+patient+and+public+involvement+in+implementation+research:+a+consensus+study.">Role of patient and public involvement in implementation research: a consensus study.</a> BMJ quality &amp; safety. 27 (10), 858-864 (2018).</li><li>Blackburn, S., McLachlan, S., Jowett, S., Kinghorn, P., Gill, P., Higginbottom, A., Rhodes, C., Stevenson, F., Jinks, C. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=The+extent,+quality+and+impact+of+patient+and+public+involvement+in+primary+care+research:+a+mixed+methods+study.">The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study.</a> Research Involvement and Engagement. 4 (16), (2018).</li></ol>

The authors have no disclosures to state.

The protocol presented here reflects an experimental, novel approach to incorporating the views of iDLD/iDLDPC into a research priority setting exercise. In its development, it was considered that an important aspect of the protocol is the execution of Step 1 and 2 by a SLT with specialist skills in DLD, and who understands the individualized support needs of iDLD/iDLDPC. This aimed to support validity of the outputs, which subsequently influenced the next stages of the research priority setting process. The protocol directs execution of evidence-based support strategies for iDLD, which are aimed at priming the skills and understanding required for their full participation in the exercise. Moreover, the steps in the protocol can be modified, by the SLT, to the most suitable level for each individual. As experts in speech, language and communication needs, the role of the SLT in these steps is important to ensure the iDLD/iDLDPC has understood the concepts and can consequently express their opinion about them. Whilst the SLTs were required to be: (a) a DLD specialist and (b) familiar with the iDLD/iDLDPC, the impact of these requisites was not evaluated and so it is possible that these could be modified in future replications of the protocol. Nevertheless, such demand of expertise, resource and capacity is unlikely to be supplied in standard research priority setting protocols and it is valuable to explore solutions.
Presentation of this protocol may assist future projects in planning for and incorporating service-user input into their research priority setting. However, it is recognized that the protocol is likely to evolve; following a pilot of the protocol, some modifications were made. This largely included further refinement of the program of activities in Step 1. For example, in the pilot protocol, step 1.6 Consolidate and teach key concept of &#8216;speech, language and communication&#8217; was essentially omitted, but it was found that additional time needed to be spent consolidating these concepts for some iDLD/iDLDPC, therefore an activity was added in. It was also identified that adding in this step could have additional benefits for the iDLD/iDLDPC, since DLD is a relatively new diagnosis2. Participation may therefore offer iDLD/iDLDPC a unique opportunity to learn more about their diagnosis and what this means for them and others, in a world where there is limited diagnostic adjustment work or psychosocial support available28. It is likely that there may be other creative modifications that may enhance either the experience of participating for iDLD/iDLDPC, or the validity of the outputs. We anticipate that future iterations of the protocol could involve a greater focus on preparatory activities to ensure understanding of key concepts such as &#39;research&#39; and &#39;priorities&#39;, especially for younger iDLD. Reflections from carrying out the sessions with iDLD/iDLDPC suggested that some of the materials developed for this section (for example, Supplementary File H) caused a level of confusion and could be developed further, by changing the phrasing of the &#8216;research headlines&#8217; to be more fit-for-purpose.
While the aim was to develop an evidence-based protocol, there were challenges in doing so for some aspects. This applies to, for example, identifying a meaningful way to transform ratings of topics by iDLD/iDLDPC into the defined research area survey data. This necessitates a degree of pragmatism and judgement resulting from the absence of an accepted, robust approach. It is recognized that some elements of the protocol rely on consensus of the research group. This aligns with the approach taken in other methods, notably, the JLA PSPs17. While only small-scale in this protocol, consensus-making is a method which carries flaws in and of itself29. Going forward, it is possible a more reliable, valid and stringent way of transforming this data could be identified. Additionally, it is difficult to truly secure the fidelity of the protocol describing the program of activities. Supporting communication in iDLD should be personalized for the individual&#8217;s unique combination of strengths and needs2 and so given the heterogeneity of the population of iDLD, the protocol is likely to require ongoing adaptation.
While it is perceived that the protocol&#8217;s accommodation of individual needs is advantageous and suggests the protocol could be carried out with iDLD aged 7 years and above, it is acknowledged that in the context of traditional scientific rigor employing different approaches with different participants would be seen to compromise the reliability of the results. It is also difficult to ascertain the true extent to which iDLD/iDLDPC were able to access the exercise, and to which their ratings are valid and reliable. For some iDLD/iDLDPC, particularly those who are young or who have only recently learned about their diagnosis of DLD, obtaining a clear understanding of what this means for them presents a considerable challenge. A number of steps were taken to minimize these risks, such as repetition and consolidation activities. In future, measures could be taken to capture and evaluate this robustly: assessing the SLT&#8217;s confidence in each iDLD/iDLDPC&#8217;s understanding and authenticity of the ratings, or carrying out the protocol on a different day with the same iDLD/iDLDPC and comparing findings. Furthermore, the iDLDs that ended up participating were school-aged children, therefore while the protocol&#8217;s success may suggest it is useful for this age group, it may not be appropriate to generalize to adults with DLD. Future examination of this would be of interest.
While there is an increasing focus on inclusion of groups of individuals requiring different types and levels of support to access research involvement30 the extent to which adaptations are made for individuals with speech, language or communication needs is questionable. While PPI guidance tends to highlight the need for clear communication with patient groups (e.g., the UK PI Standards31) this is often oriented to ensuring the style of information or terminology given by professionals or researchers is accessible to the &#8216;layperson&#8217;. There is a fundamental gap in the guidance on how to create PPI protocols which are accessible to those who have communication difficulties. Some research proposes methods for engaging such populations in, for example, qualitative research32 that provides a useful backdrop to the methods presented here. However, it is possible research priority setting exercises present a unique challenge for people with communication difficulties given the abstract and metacognitive concepts of &#8216;research&#8217; and &#8216;research priorities&#8217;. This protocol describes one process which could be taken to address these challenges.
Whilst iDLD were presented a certificate of participation, iDLD and iDLDPC were not financially rewarded for their involvement in this protocol, contrary to good practice33. This was because the budget for such payment was not fully appreciated when the project was first conceived. Since this point, in 2014, a body of evidence has emerged further refining the role of patients and public in research34, particularly implementation research35, and the cost and consequences of PPI36. These include recommendations pertaining to the use of rewards, including financially incentivizing service-users which aims to also reduce power differentials and empower individuals, and demonstrate the value that researchers place on their time, commitment and expertise34. Whilst financial rewards were not offered, steps were taken to minimize potential burdens for iDLD/iDLDPC to participate. For example, the sessions were carried out in the SLT&#8217;s places of work, and where iDLDPC were already meeting or taking their children, and therefore no participants incurred expenses. SLTs carried out the program of activities for iDLD during school hours so there were no additional time pressures for iDLD, or for the iDLDPC to transport the child to and from the session. Furthermore, the SLTs met with iDLDPC just before or after their child&#8217;s regular &#8216;pick-up time&#8217; to minimize disruption to participants&#8217; schedules. For future replications of the protocol we would recommend iDLD/iDLDPC are involved in conversations about how they would like to be rewarded, in line with current guidance33.
The advantage of this protocol is that it provides an evidence-based framework for eliciting views from iDLD/iDLDPC on a complex topic, which could be replicated for multiple purposes. For example, for carrying out a subsequent DLD research priority setting exercise or for research priority setting exercises with people with other kinds of speech, language and communication needs. Importantly, it may also be used as a basis for involving iDLD/iDLDPC or similar populations in research in the broader sense.

An erratum was issued for:&#160;<a href="https://www.jove.com/t/61267/involving-individuals-with-developmental-language-disorder-their">Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting</a>. The tables in the Representative Results section were updated.

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

An erratum was issued for:&#160;<a href="https://www.jove.com/t/61267">Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting</a>. The Authors section was updated from:
Katie E. Chadd1 
Amit A. Kulkarni1 
Lauren M. Longhurst1 
1Royal College of Speech and Language Therapists
to:
Katie E. Chadd1 
Amit A. Kulkarni1 
Lauren M. Longhurst1 
Mia Travlos2 
1Royal College of Speech and Language Therapists 
2Blossom House School

An erratum was issued for:&#160;<a href="https://www.jove.com/t/61267">Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting</a>. The Authors section was updated.

Developmental language disorder (DLD) is a multifactorial, life-long condition characterized by difficulties with understanding and/or using language1. This can manifest in any or all areas of speech, language and communication (e.g., understanding instructions, word-finding, or joining a conversation)2. As a result, individuals with DLD (iDLD) are at increased risk of difficulties with their mental health3, relationships4, educational attainment and employment prospects5.
iDLD and their parents/carers (iDLDPC) are supported by speech and language therapists (SLTs) who are required to take an evidence-based approach to practice6. However, many gaps exist in the DLD evidence base7. Research priority setting exercises aim to address such situations, asking key stakeholders to consider what research is most urgently required8. Whilst some research priority setting approaches are focused on gathering &#39;expert opinion&#39; of researchers9, more recently, and within the UK context, such exercises are more typically carried out in research priority setting partnerships10. Born out of the movement for evidence-based practice11, research priority setting partnerships are designed to address the disconnect between the research agendas of academics, clinicians and users of health services12,13. Bringing together all key stakeholders, including service-users, to jointly decide upon research priorities offers theoretical and pragmatic benefits, improving the relevance, quality and impact of the process14. Additionally, involving service-users in research priority setting is a public and patient involvement (PPI) imperative within the UK&#39;s National Health Service15. It is therefore crucial that iDLD/iDLDPC are involved in research priority setting in this area.
There is no &#8220;gold standard method for health research &#8230; priority setting&#8221;14 but several approaches have been published. However, the communication challenges faced by iDLD/iDLDPC put them (or their opinions) at risk of being excluded via these methods. For example, the Dialogue Model relies entirely on in depth interviews with service-users16. Similarly, the James Lind Alliance Priority Setting Partnership (JLA PSP) approach17, 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 &#8216;brainstorm&#8217; ideas, verbally express and then discuss them18. It is reasonable to assume the extent of meaningful involvement of iDLD/iDLDPC may be limited when using these approaches to research priority setting.
Another challenge in involving iDLD/iDLDPC in standardized protocols is that even if support was available, each individual will present a unique combination of strengths and needs in different aspects of language and communication1. Thus, one approach is unlikely to address the needs of everyone, putting some individuals at risk of exclusion. Here, a novel methodology is presented that embeds differentiated instruction and flexibility at its center. Perceived to be integral to the protocol is its delivery by specialist DLD SLTs with a detailed understanding of the iDLD/iDLDPC&#8217;s specific communication skills. This enhances reliability and assures quality as the SLT has: specialist knowledge, skills and experience working in DLD, and has already built a therapeutic relationship with the iDLD/iDLDPC19. This increases both the likelihood that the SLT can identify when the iDLD has understood and that the SLT can interpret the iDLD opinions accurately.
Resources and time are frequently cited as barriers to meaningful involvement of service-users in research20. Individuals with complex needs may be particularly disadvantaged. The British Academy of Childhood Disability state about their JLA PSP21: &#8220;our resources and time were insufficient to engage children and young people meaningfully&#8221; but that meaningful involvement could have been greater with &#8220;adequate resources&#8221; and &#8220;careful planning&#8221;. Pollock, St George, Fenton, Crowe &#38; Firkins22 adapted the JLA protocol in order to account for this additional demand on capacity and resources. Their &#8216;FREE TEA&#8217; model was implemented in a PSP for life after stroke. This offered an alternative, face-to-face method to yield data from service-users, which was considered to be much richer than that obtained through surveys. Additionally, Rowbotham et al.10 demonstrated success of online participation, which was imperative for the healthy involvement of people with cystic fibrosis (CF), in a CF JLA PSP. These innovative approaches demonstrate that when resources and time are used strategically, meaningful involvement is bolstered and the final output more reflective of service-user priorities.
It is well documented in the PPI literature that tokenism is common, which risks trivializing the impact and value of PPI20. This protocol describes a four-step process for meaningful involvement of iDLD/iDLDPC in a research priority setting exercise at multiple stages, reducing risk of tokenism:
Step 1: A program of activities for SLTs to carry out with iDLDs/iDLDPCs, aimed at developing their understanding of concepts related to research priorities; 
Step 2: An exercise for data collection on research priorities; 
Step 3: A method for data transformation to influence early stages of a research priority setting process; 
Step 4: A method for data transformation to influence late stages of a research priority setting process
To administer steps one and two, SLTs were recruited via advertisement in the organization&#8217;s general communications (for example, online forums). SLTs were required to be specialist DLD SLTs of UK band 6 (or above), and who had iDLD/iDLDPC on their caseload who they were familiar with and who could consent to participating. SLTs attended a 3 hour training session delivered by the research group (KC, AK, LL) to become familiar with the theoretical approach to the project, the program of activities and materials used. To maximize generalizability of the protocol, minimal exclusion criteria were specified for iDLD/iDLDPC participants. The expert SLTs formed consensus on the criteria that children in Key Stage 2 or above (7 years +) would be involved and would also allow iDLD with either suspected or confirmed DLD to participate. Selection of participants relied on the SLT&#8217;s clinical judgement of whether the iDLD/iDLDPC would be able to access the activities, even if suitable according to the inclusion criteria.
The program of activities, described in step 1 of the protocol uses an evidence-based inclusive communication approach, using tools and strategies to help iDLD understand and express themselves. Needs were planned for rather than reacted to and inclusive communication strategies were integrated consistently across the priority setting exercise, for example in forms, online communications and materials23. Activities were developed based upon the triangle of accessible support24, and addressed individual strengths and needs of the iDLD. The program includes optional activities and ones that can be implemented in different formats, which are to be selected by the specialist DLD SLT to tailor to the needs of iDLD/iDLDPC. This further recognizes the unique clinical skills, knowledge and experience of the SLT which optimize the iDLD&#8217;s communication capacity24. This component of the protocol is supported by materials found in the Supplementary Files.
The data collection activity described in step 2 of the protocol was based on 11 &#8216;topics&#8217; about DLD, which were associated with superordinate themes identified from a previous evaluation of professionals&#8217; &#8216;uncertainties&#8217; about DLD research25. iDLD/iDLDPC may experience greater difficulty with verbal reasoning26 therefore a topic-based approach was chosen over the presentation of many subordinate topics. Working memory may also be impaired in iDLD/iDLDPC27, thus in order to support iDLD/iDLDPC with decision-making, data was obtained via an individual-topic rating exercise followed by a comparative ranking exercise when appropriate.
Step 3 presents a data transformation process enabling iDLD/iDLDPC&#8217;s opinions on priorities to influence the early research priority setting process, by determining the types of topics that other stakeholders should discuss in the initial stages of the process. This was achieved by examining the average ratings by iDLD/iDLDPC&#8217;s on their perceived level of &#8216;priority&#8217; of the 11 DLD research topics (obtained from step 2) and forming consensus on whether there was sufficient agreement from participants on highly-rated (i.e., &#8216;prioritized&#8217;) topics. The aim of this evaluation was to inform which, if any, topics could be validly disregarded and not considered in the subsequent stages of the process, and which should be taken forward.
The final step describes use of the same data to transform survey data to further reflect iDLD/iDLDPC&#8217;s priorities and influence the final output. As part of the broader research priority setting process (beyond this protocol), defined research areas for DLD were developed by stakeholders, who subsequently voted for which areas they considered a priority via an online survey. Each defined research area was related to one of more of the topics that were previously rated by iDLD/iDLDPC. The iDLD/iDLDPC rating data was used to &#8216;boost&#8217; votes for the defined research areas associated with highly rated research topics.
This protocol is designed for those planning to set research priorities for DLD, who wish to meaningfully involve iDLD/iDLDPC. Access to specialist DLD SLTs and their clinical caseload of iDLD, and iDLDPC is required. It is designed to complement an overall research priority setting process collecting additional data, for example the topics of interest and defined research areas. A project group approach is recommended to allow for group decision-making. It may also be adaptable for use with iDLD/iDLDPC or different populations with speech, language and communication disorders, in other research activities.

<table><tbody><tr><td>Supporting resources</td><td>Royal College of Speech and Language Therapists</td><td></td><td></td></tr></tbody></table>

involving individuals with developmental language disorder and their parents/carers in research priority setting

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&#8217;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&#160;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.

Watch this Scientific Journal Video about Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting at JoVE.com

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

A protocol to enable individuals with developmental language disorder (DLD) and their parents/carers to meaningfully participate in a research priority setting exercise is established. The protocol includes a defined program of activities for data collection, and methods to incorporate this data into the broader research priority setting process.

A protocol for involving individuals presenting with developmental language disorder (DLD) (iDLD) and their parents/carers (iDLDPC) in a research priority ...

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3.5K Views.  Royal College of Speech and Language Therapists. A protocol to enable individuals with developmental language disorder (DLD) and their parents/carers to meaningfully participate in a research priority setting exercise is established. The protocol includes a defined program of activities for data collection, and methods to incorporate this data into the broader research priority setting process.

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

Making Sense of Listening: The IMAP Test Battery

The ability to hear is only the first step towards making sense of the range of information contained in an auditory signal. Of equal importance are the abilities to extract and use the information encoded in the auditory signal. We refer to these as listening skills (or auditory processing AP). Deficits in these skills are associated with delayed language and literacy development, though the nature of the relevant deficits and their causal connection with these delays is hotly debated.
When a child is referred to a health professional with normal hearing and unexplained difficulties in listening, or associated delays in language or literacy development, they should ideally be assessed with a combination of psychoacoustic (AP) tests, suitable for children and for use in a clinic, together with cognitive tests to measure attention, working memory, IQ, and language skills. Such a detailed examination needs to be relatively short and within the technical capability of any suitably qualified professional. Current tests for the presence of AP deficits tend to be poorly constructed and inadequately validated within the normal population. They have little or no reference to the presenting symptoms of the child, and typically include a linguistic component. Poor performance may thus reflect problems with language rather than with AP. To assist in the assessment of children with listening difficulties, pediatric audiologists need a single, standardized child-appropriate test battery based on the use of language-free stimuli.
We present the IMAP test battery which was developed at the MRC Institute of Hearing Research to supplement tests currently used to investigate cases of suspected AP deficits. IMAP assesses a range of relevant auditory and cognitive skills and takes about one hour to complete. It has been standardized in 1500 normally-hearing children from across the UK, aged 6-11 years. Since its development, it has been successfully used in a number of large scale studies both in the UK and the USA. IMAP provides measures for separating out sensory from cognitive contributions to hearing. It further limits confounds due to procedural effects by presenting tests in a child-friendly game-format. Stimulus-generation, management of test protocols and control of test presentation is mediated by the IHR-STAR software platform. This provides a standardized methodology for a range of applications and ensures replicable procedures across testers. IHR-STAR provides a flexible, user-programmable environment that currently has additional applications for hearing screening, mapping cochlear implant electrodes, and academic research or teaching.

A test battery (IMAP) for performing an in-depth assessment of auditory and cognitive abilities contributing to listening skills is described. It is quick to administer, child-friendly and free from linguistic confounds. Stimulus generation and protocol management are controlled via a software platform (IHR-STAR) to ensure replicable procedures.

The ability to hear is only the first step towards making sense of the range of information contained in an auditory signal. Of equal importance are the ...

Practical Methodology of Cognitive Tasks Within a Navigational Assessment

This paper describes an approach for measuring navigation accuracy relative to cognitive skills. The methodology behind the assessment will thus be clearly outlined in a step-by-step manner. Navigational skills are important when trying to find symbols within a speech-generating device (SGD) that has a dynamic screen and taxonomical organization. The following skills have been found to impact children&#8217;s ability to find symbols when navigating within the levels of an SGD: sustained attention, categorization, cognitive flexibility, and fluid reasoning1,2. According to past studies, working memory was not correlated with navigation1,2.
The materials needed for this method include a computerized tablet, an augmentative and alternative communication application, a booklet of symbols, and the Leiter International Performance Scale-Revised (Leiter-R)3. This method has been used in two previous studies. Robillard, Mayer-Crittenden, Roy-Charland, Minor-Corriveau and B&#233;langer1 assessed typically developing children, while Rondeau, Robillard and Roy-Charland2 assessed children and adolescents with a diagnosis of Autism Spectrum Disorder. The direct observation of this method will facilitate the replication of this study for researchers. It will also help clinicians that work with children who have complex communication needs to determine the children&#8217;s ability to navigate an SGD with taxonomical categorization.

Children who have complex communication needs can benefit from the use of a speech-generating device (SGD). Cognitive skills were identified as having an impact on the ability to navigate between levels of SGDs. This protocol describes the steps needed for Speech-language Pathologists to assess cognitive skills and navigational abilities.

This paper describes an approach for measuring navigation accuracy relative to cognitive skills. The methodology behind the assessment will thus be ...

Behavior

A Novel Experimental and Analytical Approach to the Multimodal Neural Decoding of Intent During Social Interaction in Freely-behaving Human Infants

Understanding typical and atypical development remains one of the fundamental questions in developmental human neuroscience. Traditionally, experimental paradigms and analysis tools have been limited to constrained laboratory tasks and contexts due to technical limitations imposed by the available set of measuring and analysis techniques and the age of the subjects. These limitations severely limit the study of developmental neural dynamics and associated neural networks engaged in cognition, perception and action in infants performing &#8220;in action and in context&#8221;. This protocol presents a novel approach to study infants and young children as they freely organize their own behavior, and its consequences in a complex, partly unpredictable and highly dynamic environment. The proposed methodology integrates synchronized high-density active scalp electroencephalography (EEG), inertial measurement units (IMUs), video recording and behavioral analysis to capture brain activity and movement non-invasively in freely-behaving infants. This setup allows for the study of neural network dynamics in the developing brain, in action and context, as these networks are recruited during goal-oriented, exploration and social interaction tasks.

This protocol presents a novel methodology for the neural decoding of intent from freely-behaving infants during unscripted social interaction with an actor. Neural activity is acquired using non-invasive high-density active scalp electroencephalography (EEG). Kinematic data is collected with inertial measurement units and supplemented with synchronized video recording.

Understanding typical and atypical development remains one of the fundamental questions in developmental human neuroscience. Traditionally, experimental ...

Behavioral Assessment of Hearing in 2 to 4 Year-old Children: A Two-interval, Observer-based Procedure Using Conditioned Play-based Responses

Collecting reliable behavioral data from toddlers and preschoolers is challenging. As a result, there are significant gaps in our understanding of human auditory development for these age groups. This paper describes an observer-based procedure for measuring hearing sensitivity with a two-interval, two-alternative forced-choice paradigm. Young children are trained to perform a play-based, motor response (e.g., putting a block in a bucket) whenever they hear a target signal. An experimenter observes the child&#39;s behavior and makes a judgment about whether the signal was presented during the first or second observation interval; the experimenter is blinded to the true signal interval, so this judgment is based solely on the child&#39;s behavior. These procedures were used to test 2 to 4 year-olds (n = 33) with no known hearing problems. The signal was a 1,000 Hz warble tone presented in quiet, and the signal level was adjusted to estimate a threshold corresponding to 71%-correct detection. A valid threshold was obtained for 82% of children. These results indicate that the two-interval procedure is both feasible and reliable for use with toddlers and preschoolers. The two-interval, observer-based procedure described in this paper is a powerful tool for evaluating hearing in young children because it guards against response bias on the part of the experimenter.

This paper describes a procedure for measuring hearing sensitivity in 2 to 4 year-old children. Children are trained to perform play-based responses when they hear a target signal. Thresholds are then estimated in a two-interval, two-alternative forced-choice paradigm, based on observations of the child&#39;s behaviors.

Collecting reliable behavioral data from toddlers and preschoolers is challenging. As a result, there are significant gaps in our understanding of human ...

A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting

Involvement of patients and the public is now recognized to be essential for the good conduct of research. Patient and public involvement in research priority setting and funding decisions is only beginning to be recognized as important, and methods for doing so are nascent. This protocol describes the Research Prioritization by Affected Communities (RPAC) protocol and findings from its use with women at high socio-demographic risk for preterm birth. The goal was to directly involve these women in identifying and prioritizing their unanswered questions about pregnancy, birth and neonatal care, and treatment so that their views could be included in research priority setting by funders and researchers. The RPAC protocol may be used to meaningfully involve under-represented groups at high-risk for specific health problems, or those who face disproportionate burden of disease, in research strategy and funding priority setting.

This manuscript describes the Research Prioritization by Affected Communities (RPAC) protocol and findings from its use with women at risk for preterm birth. Using the protocol, women identified and prioritized their unanswered questions about pregnancy, birth and neonatal care aimed at influencing research priority setting by funders and researchers.

Involvement of patients and the public is now recognized to be essential for the good conduct of research. Patient and public involvement in research ...

Portable Intermodal Preferential Looking (IPL): Investigating Language Comprehension in Typically Developing Toddlers and Young Children with Autism

One of the defining characteristics of autism spectrum disorder (ASD) is difficulty with language and communication.1 Children with ASD's onset of speaking is usually delayed, and many children with ASD consistently produce language less frequently and of lower lexical and grammatical complexity than their typically developing (TD) peers.6,8,12,23 However, children with ASD also exhibit a significant social deficit, and researchers and clinicians continue to debate the extent to which the deficits in social interaction account for or contribute to the deficits in language production.5,14,19,25
Standardized assessments of language in children with ASD usually do include a comprehension component; however, many such comprehension tasks assess just one aspect of language (e.g., vocabulary),5 or include a significant motor component (e.g., pointing, act-out), and/or require children to deliberately choose between a number of alternatives. These last two behaviors are known to also be challenging to children with ASD.7,12,13,16
We present a method which can assess the language comprehension of young typically developing children (9-36 months) and children with autism.2,4,9,11,22 This method, Portable Intermodal Preferential Looking (P-IPL), projects side-by-side video images from a laptop onto a portable screen. The video images are paired first with a 'baseline' (nondirecting) audio, and then presented again paired with a 'test' linguistic audio that matches only one of the video images. Children's eye movements while watching the video are filmed and later coded. Children who understand the linguistic audio will look more quickly to, and longer at, the video that matches the linguistic audio.2,4,11,18,22,26
This paradigm includes a number of components that have recently been miniaturized (projector, camcorder, digitizer) to enable portability and easy setup in children's homes. This is a crucial point for assessing young children with ASD, who are frequently uncomfortable in new (e.g., laboratory) settings. Videos can be created to assess a wide range of specific components of linguistic knowledge, such as Subject-Verb-Object word order, wh-questions, and tense/aspect suffixes on verbs; videos can also assess principles of word learning such as a noun bias, a shape bias, and syntactic bootstrapping.10,14,17,21,24 Videos include characters and speech that are visually and acoustically salient and well tolerated by children with ASD.

Portable Intermodal Preferential Looking IPL: Investigating Language Comprehension in Typically Developing Toddlers and Young Children with Autism

A reliable home-based way to assess the language comprehension of very young typically developing children, as well as those with autism, is described. The method analyzes children's eye gaze while viewing side-by-side images but hearing an audio that matches only one image. Stimuli are designed with young participants in mind.

One  of the defining characteristics of autism spectrum disorder (ASD) is difficulty  with language and communication.1  Children with ASD's onset of ...

Using the Visual World Paradigm to Study Sentence Comprehension in Mandarin-Speaking Children with Autism

Sentence comprehension relies on the ability to rapidly integrate different types of linguistic and non-linguistic information. However, there is currently a paucity of research exploring how preschool children with autism understand sentences using different types of cues. The mechanisms underlying sentence comprehension remains largely unclear. The present study presents a protocol to examine the sentence comprehension abilities of preschool children with autism. More specifically, a visual world paradigm of eye-tracking is used to explore the moment-to-moment sentence comprehension in the children. The paradigm has multiple advantages. First, it is sensitive to the time course of sentence comprehension and thus can provide rich information about how sentence comprehension unfolds over time. Second, it requires minimal task and communication demands, so it is ideal for testing children with autism. To further minimize the computational burden of children, the present study measures eye movements that arise as automatic responses to linguistic input rather than measuring eye movements that accompany conscious responses to spoken instructions.

We present a protocol to examine the use of morphological cues during real-time sentence comprehension by children with autism.

Sentence comprehension relies on the ability to rapidly integrate different types of linguistic and non-linguistic information. However, there is ...

Exploring Infant Sensitivity to Visual Language using Eye Tracking and the Preferential Looking Paradigm

We discuss the use of the preferential looking paradigm in eye tracking studies in order to study how infants develop, understand, and attend to the world around them. Eye tracking is a safe and non-invasive way to collect gaze data from infants, and the preferential looking paradigm is simple to design and only requires the infant to be attending to the screen. By simultaneously showing two visual stimuli that differ in one dimension, we can assess whether infants show different looking behavior for either stimulus, thus demonstrating sensitivity to that difference. The challenges in such experimental approaches are that experiments must be kept brief (no more than 10 min) and be carefully controlled such that the two stimuli differ in only one way. The interpretation of null results must also be carefully considered. In this paper, we illustrate a successful example of an infant eye tracking study with a preferential looking paradigm to discover that 6-month-olds are sensitive to linguistic cues in a signed language despite having no prior exposure to signed language, suggesting that infants possess intrinsic or innate sensitivities to these cues.

Eye tracking studies using a preferential looking paradigm can be used to study infants&#39;&#160;emerging understanding of, and attention to, their external visual world.

We discuss the use of the preferential looking paradigm in eye tracking studies in order to study how infants develop, understand, and attend to the world ...

Multimodal Protocol for Assessing Metacognition and Self-Regulation in Adults with Learning Difficulties

Learning disabilities (LDs) encompass disorders of those who have difficulty learning and using academic skills, exhibiting performance below expectations for their chronological age in the areas of reading, writing, and/or mathematics. Each of the disorders making up the LDs involve different deficits; however, some commonalities can be found within that heterogeneity, such in terms of learning self-regulation and metacognition. Unlike in early ages and later educational levels, there are hardly any evidence-based evaluation protocols for adults with LDs. LDs influence academic performance but also have serious consequences in professional, social, and family contexts. In response to this, the current work proposes a multimodal evaluation protocol focused on metacognitive, self-regulation of learning, and emotional processes, which make up the basis of the difficulties in adults with LDs. The assessment is carried out through analysis of the on-line learning process using a variety methods, techniques, and sensors (e.g., eye tracking, facial expressions of emotion, physiological responses, concurrent verbalizations, log files, screen recordings of human-machine interactions) and off-line methods (e.g., questionnaires, interviews, and self-report measures). This theoretically-driven and empirically-based guideline aims to provide an accurate assessment of LDs in adulthood in order to design effective prevention and intervention proposals.

The current work proposes a multimodal evaluation protocol focused on metacognitive, self-regulation of learning, and emotional processes, which make up the basis of the difficulties in adults with LDs.

Learning disabilities (LDs) encompass disorders of those who have difficulty learning and using academic skills, exhibiting performance below expectations ...

Protocol for Assessing Gestures Under Communication Challenges

Examining Gesture Production in the Presence of Communication Challenges

Understanding why speakers modify their co-speech hand gestures when speaking to interlocutors provides valuable insight into how these gestures contribute to interpersonal communication in face-to-face and virtual contexts. The current protocols manipulate the visibility of speakers and their interlocutors in tandem in a face-to-face context to examine the impact of visibility on gesture production when communication is challenging. In these protocols, speakers complete tasks such as teaching words from an unfamiliar second language or recounting the events of cartoon vignettes to an interlocutor who is either another participant or a confederate. When performing these tasks, speakers are visible or non-visible to their interlocutor, and the speaker is visible or non-visible to the participant. In the word learning task, speakers and interlocutors visible to one another produce more representational gestures, which convey meaning via handshape and motion, and deictic (pointing) gestures than speakers and interlocutors who are not visible to one another. In the narrative retelling protocol, adolescents with autism spectrum disorder (ASD) produced more gestures when speaking to visible interlocutors than non-visible interlocutors. A major strength of the current protocol is its flexibility in terms of the tasks, populations, and gestures examined, and the current protocol can be implemented in videoconferencing as well as face-to-face contexts. Thus, the current protocol has the potential to advance the understanding of gesture production by elucidating its role in interpersonal communication in populations with communication challenges.

Author Spotlight: Deciphering the Cognitive and Neural Mechanisms of Gesture in Communication  

Here, we present a protocol that manipulates interlocutor visibility to examine its impact on gesture production in interpersonal communication. This protocol is flexible to tasks implemented, gestures examined, and communication modality. It is ideal for populations with communication challenges, such as second language learners and individuals with autism spectrum disorder.