Name: involving individuals with developmental language disorder and their parents/carers in research priority setting
Uploaded: 2020-06-06T15:00:00
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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 ...

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.

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