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See discussions, stats, and author profiles for this publication at: https://www.researchgate.net/publication/371563609A Delphi study exploring the barriers to dyslexia diagnosis and support: Aparent's perspectiveArticleinDyslexia · June 2023DOI: 10.1002/dys.1743CITATIONS9READS2544 authors, including:Emily OxleyUniversity of Glasgow47PUBLICATIONS227CITATIONSSEE PROFILEHannah M. NashUniversity of Leeds37PUBLICATIONS1,946CITATIONSSEE PROFILEAll content following this page was uploaded by Emily Oxley on 14 June 2023.The user has requested enhancement of the downloaded file.
R E S E A R C H A R T I C L EA Delphi study exploring the barriers to dyslexiadiagnosis and support: A parent's perspectiveSophie Harding1|Maya Chauhan-Sims2|Emily Oxley2|Hannah M. Nash31Institute of Psychiatry, Psychology &Neuroscience, King's College London,London, UK2School of Interdisciplinary Studies, Universityof Glasgow, Glasgow, UK3School of Psychology, University of Leeds,Leeds, UKCorrespondenceEmily Oxley, School of InterdisciplinaryStudies, University of Glasgow, Glasgow, UK.Email:emily.oxley1@outlook.comThe Rose Report (Rose,Independent review of the primarycurriculum (England); 2009) outlined a set of recommenda-tionsforthemanagementofdyslexiaintheUnited Kingdom after a range of issues were found. Despitethese recommendations, recent reports indicate that issuesare still prevalent in the diagnosis process and supportofferedfordyslexicchildren.TheDelphimethodwasemployed to gain parental consensus as to the most signifi-cant barriers to diagnosis and delivery of support for chil-dren with dyslexia, as well as solutions to overcoming thesebarriers. Parents of primary school children with dyslexiawere recruited for the study and were presented with athree round iterative questionnaire surrounding their expe-rience of their child's dyslexia management. Parents' experi-ences of their child's diagnosis were explored to provide afirst-hand account of the diagnosis procedure. Two over-archingissueswereidentified:parentsperceivethatteachers have a lack of training around dyslexia, both ini-tially and from continued professional development, andparents believe there is insufficient funding for dyslexia inschools and local authorities. Overall, the study indicatedthat better guidance is needed to ensure that reform andspending leads to tangible change in the identification ofEmily Oxley and Sophie Harding were formerly at the University of Leeds. We would like to thank the families who took part in our survey.Received: 28 October 2022Revised: 10 May 2023Accepted: 17 May 2023DOI: 10.1002/dys.1743This is an open access article under the terms of theCreative Commons AttributionLicense, which permits use, distribution andreproduction in any medium, provided the original work is properly cited.© 2023 The Authors.Dyslexiapublished by John Wiley & Sons Ltd.Dyslexia.2023;1–17.wileyonlinelibrary.com/journal/dys1
dyslexia and provision of support for children with dyslexiain primary education in the United Kingdom.K E Y W O R D SDelphi survey, diagnosis, dyslexia, parents, support1|INTRODUCTIONDyslexiaisaneurodevelopmentaldisorder,withabiologicalorigin,thatmanifestsinlearningdifficultiescharacterised by problems with accurate or fluent word recognition, poor spelling and decoding ability (AmericanPsychiatric Association [APA],2013). It is estimated that around 10% of the population have dyslexia, making it themost common specific learning difficulty in the United Kingdom, affecting around 1 million young people in educa-tion (British Dyslexia Association [BDA],2019a).The impact of dyslexia goes much further than reading and writing, affecting academic attainment, self-esteemand quality of life as well as a myriad of later life outcomes (Livingston et al.,2018). Individuals diagnosed with dys-lexia have been found to achieve lower pay rates to non-dyslexic counterparts (de Beer et al.,2014) and slowercareer progression (Morris & Turnbull,2007). It is therefore crucial that children receive a timely diagnosis andappropriate support to limit the negative cascading effects of dyslexia.Dyslexia has been found to have a profound emotional impact on the individual and their family. Research hasfound an association between dyslexia and a variety of mental health difficulties as well as impaired psychosocialfunctioning (Livingston et al.,2018; Parhiala et al.,2015). Dyslexia has been linked to negative self-concept andlower self-esteem as well as those with dyslexia being more likely to exhibit symptoms of anxiety and depression(Doikou-Avlidou,2015; Eissa,2010). Protective factors that encourage high self-esteem and self-efficacy, such asemotional support from family members (Terras et al.,2009) and early-diagnosis (Battistutta et al.,2018) shouldtherefore inform the structure and approach to supporting children with dyslexia. The negative impact dyslexia canhave on mental health and wellbeing is heavily influenced by the environment in which dyslexia is identified andmanaged.Despite government policy in England requiring all teachers to have the capacity to meet the needs of children(Department for Education,2015) provision of targeted, appropriate and one-on-one support has found to be lackingfor children with dyslexia (Knight,2018). The Rose Report (Rose,2009) was an independent review of the manage-ment of dyslexia, commissioned by the UK government. This in-depth report highlighted issues with the diagnosisand support for dyslexia and formulated recommendations for future educational policy and the classroom environ-ment. These included better training to improve mainstream teacher knowledge and provision of more in-depthtraining for‘dyslexia specialists’. However, more recent reports on dyslexia in the United Kingdom have highlightedsimilar issues (BDA,2019a,2019b); indicating that the recommendations made by the Rose Report (Rose,2009)have not been acted upon. The Dyslexia Screening Bill (Dyslexia Screening,2021) proposes that all children arescreened for dyslexia before leaving primary school and argues for better assessment and improved training forteachers. Issues regarding identification and support for children with dyslexia and other special educational needsor disability (SEND) are laid out in the recent SEND review (HM Government,2022). Parents of children with SENDreport their experiences of the current system as bureaucratic and adversarial, encompassing difficulties and delays.The current system is not equally accessible, with those who have access to better financial and social resources bet-ter able to navigate the system and get support for their child (HM Government,2022). The review identifies greaternational consistency, early and accurate identification and prompt access to support as key targets for reform.The Morton and Frith (1995) causal model explains dyslexia as a multi-level disorder, with biological, cognitiveand behavioural levels all relevant to informing effective interventions. Interventions targeting phonological2HARDINGET AL.10990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
processing in children with dyslexia have been shown to be most effective (McArthur et al.,2018). However, themajority of teachers surveyed by (Washburn et al.,2014) attributed dyslexia to visual difficulties. Bell et al. (2011)also found that less than half of teachers surveyed mentioned the cognitive aspect of dyslexia and even feweracknowledged the biological component. These findings highlight a lack of in-depth knowledge from teachers ondyslexia and the processes relevant to effective interventions. The Specialist Dyslexia Training for Teachers Pro-gramme was developed in response to the Rose Report (Rose,2009) with the aim of strengthening multisensoryteaching methods, an approach that has been found to be effective for all children, including those with dyslexia(Joshi et al.,2002). The programme also focused on developing teacher knowledge of the theory that underpinseffective intervention for dyslexia (Boardman,2020). While this programme has found to be effective in increasingteacher knowledge and confidence in teaching children with dyslexia (Boardman,2020), teachers in the UK reportthat access to continued professional development focused on dyslexia is poor (Knight,2018).While there is still debate over the use of the label of dyslexia (Knight & Crick,2021) identifying and diagnosingdyslexia is typically necessary to access specialist support and intervention. Delays in identification and diagnosis ofdyslexia can feed into poorer outcomes (Livingston et al.,2018), with the frustration of not being able to perform atthe same level of peers causing behavioural issues, impeding learning further (Lisle & Wade,2013). Early identifica-tion and diagnosis are therefore important for effectively managing and supporting children with dyslexia, and help-ing to improve self-image (Colenbrander et al.,2018).The process of diagnosis in the United Kingdom remains in the hands of the local authority, meaning the systemvaries nationally and most of the time the parent/carer has to pay for a private diagnostic assessment, which canrange from£500–£700 (BDA,2019b). Socioeconomic status (SES) has been found to be a mediating factor in accessto a dyslexia assessment. Children from lower SES backgrounds are significantly less likely to be assessed and diag-nosed with dyslexia compared to children of higher-earners (Knight & Crick,2021; Macdonald & Deacon,2019).These findings show that the dyslexia label is not evenly distributed in England, which means that resources for sup-port are also not likely to be fairly distributed. Once reading difficulties are identified, children from all SES back-grounds should be able to access a formal diagnosis that is free and within the educational system (Macdonald &Deacon,2019). Removing the financial and social barriers to a formal diagnosis is critical as diagnosis acts as a gate-way to access specialist resources (Ross,2019).The Rose Report (Rose,2009) provided recommendations to improve the care and management of children withdyslexia. However, recent reports have shown that these recommendations have not been acted upon. Both theEducational Cost of Dyslexia Report (BDA,2019b) and the Human Cost of Dyslexia Report (BDA,2019a) exploredthe impact of dyslexia in the United Kingdom more recently. The Human Cost of Dyslexia report (BDA,2019a) foundthat 76% of parents felt the school was not doing a good job in supporting their child's dyslexia and 82% of parentsstatedthattheysometimesfeltangrywiththeirchild'sschool.TheEducationalCostofDyslexiareport(BDA,2019b) outlined significant issues in access to support and the financial pressures of dyslexia for the family, aswell as the longer lasting impact on educational attainment for individuals with dyslexia.These reports, along with the more recent SEND review (HM Government,2022) offer recommendations thatecho those from the Rose Report (Rose,2009). Providing appropriate and specific dyslexia training for both specialistand mainstream teachers was identified as key (BDA,2019a,2019b). The reports also highlight the need for ade-quate and consistent support with national standards and frameworks to improve the identification and support ofdyslexia in the United Kingdom (BDA,2019a,2019b; HM Government,2022).2|THE CURRENT STUDYThe current system for identifying and supporting children with dyslexia requires improvement and evidence frommajor reports suggests that little has changed for families and children with dyslexia. The current study used the Del-phi method (Dalkey & Helmer,1963) to arrive at a consensus as to the most significant barriers to diagnosis andHARDINGET AL.310990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
support for dyslexic children and recommendations for solutions and improvements to help remove barriers. TheDelphi method was selected because it is suitable for research where the goal is to improve understanding of prob-lems and solutions, as it allows a collective voice from a specific community without the difficulties and downfalls oftypical group survey methods (Kezar & Maxey,2016).Participants were parents of primary school children diagnosed with dyslexia and were considered to be expertsby experience. While we acknowledge that the parents in this study are not dyslexia experts in the traditional sense,the study is focused on their lived experience of the diagnosis procedure, including potential barriers to diagnosisand support they faced, as well as possible solutions for their removal for future parents facing the same diagnosisprocedures. The perspective of people with direct experience, such as parents, offer a valuable and important insightinto processes and systems and areas where change may be needed (CFE Research Report,2020). The barriers andsolutions identified in this research will be generated solely from parental responses and not from published litera-ture with the aim of providing new insights into the management of dyslexia in UK primary education.3|METHOD3.1|Study designThe study conducted a three-round Delphi to identify the barriers and solutions to diagnosis and support for childrenwith dyslexia. The Delphi method is an iterative questionnaire technique to enable a panel of experts by experienceto reach a consensus on an issue (Borg & Gall,1983). The different iterations allow members to change and elaborateon their opinion throughout the survey (Rowe et al.,1991). The‘controlled feedback’at each round allows groupopinion to be seen by panel members without removing the anonymised format that encourages more in-depthexpression of opinion (Rowe et al.,1991).The first round of the Delphi focuses on the generation of ideas, through qualitative open-ended questionsvia online survey format (Keil et al.,2002). In this study panel members were asked about how they woulddefine dyslexia, the process of diagnosis and their thoughts on the label of dyslexia. Parents were asked aboutthe barriers they have faced with diagnosis and support for their children and what could be done to removethese barriers. They were also asked about the type of support their child received and who provided thatsupport.Panel members provided information about their relation to the child, their postcode, their child's age and if theirchild had any siblings. Panellists were also asked to provide any details about family history of reading difficulties, orif their child had been formally diagnosed with any other developmental disorders (other than dyslexia).The qualitative responses from the first round were then collated, with themes generated and presented back inthe second round, where parents were asked to rank the different themes (Keil et al.,2002). The third round aimedto establish consensus, with panellists being asked to look at their own rankings and the average group rankings fromthe previous round to consider whether they would like to amend their rank order (Hsu & Sandford,2007).3.2|Data analysis and consensusThe open-ended questions from the first round were analysed using Thematic Analysis (Braun & Clarke,2006,2021). This six-stage data driven inductive analysis was used to identify, analyse and report common themes fromthe open questions (Braun & Clarke,2006,2021). Consensus was measured through group agreement with rankings,alongside the descriptive analysis of standard deviations. Consensus was considered to be reached when≥70% ofthe panel agreed on ranking in this study, in line with previous Delphi studies (Okoli & Pawlowski,2004).4HARDINGET AL.10990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
3.3|Panel formationAs the focus of this survey was the identification of barriers and solutions to diagnosis and support for children withdyslexia, panel members were parents of children who had recently received a formal diagnosis of dyslexia. Parentswere required to be UK based and for their child to have received a formal diagnosis of dyslexia while in primaryschool and to still be in primary school (11 years or younger), in order that experiences of the process were as recentand relevant as possible.While there is no standard for panel size in a Delphi study, the minimum panel size has been suggested to bebetween 10 and 18 (Okoli & Pawlowski,2004). Attrition between rounds is common in Delphi studies, so a largergroup of parents was initially targeted to account for this. Recruitment took place via social media on sites relevantto the target group. Consenting participants were sent a link using Qualtrics online survey software (https://www.qualtrics.com). Ethical approval was granted by the University of Leeds School of Psychology research ethicscommittee.4|RESULTS4.1|Panel characteristicsSeventy-six responses were collected in the first round, however, due to failure to meet inclusion criteria or incom-plete survey response, 49 responses were analysed. The panel was made up of 48 mothers and 1 stepmother, 53%of whom had a history of reading difficulties in their family. Forty-six of the panel members lived in England, withtwo based in Scotland and one panel member located in Wales. Twenty-nine percent of panellists' children at Round1 had been formally diagnosed with another developmental disorder alongside dyslexia (most commonly AutismSpectrum Disorder, Dyspraxia and Irlens Syndrome).Figure1outlines the panel size, average age of dyslexia diagnosis of panellists' children, English Indices of Multi-ple Deprivation (IMD) rank and decile and retention at each round. The IMD data considers sociodemographic fac-tors such as average income, employment rate and education to form a ranking (1–32,844) and decile (1–10) foreach postcode in England from most to least deprived. The average decile from the first round of data shows thatthe panel was leaning towards a higher SES (mean 7.22; SD=2.43). The composition of the SES remained stablethroughout rounds, with the range of IMD decile (2–10) and rank maintaining consistent throughout.4.2|Round 1Overall, the results indicated that parents noticed their child's reading difficulties earlier than school. Age where dys-lexia was first noticed by parents ranged from 2 to 7 years old (M=5.1, SD=1.16), whereas age first noticed byschool ranged from 5 to 11 years old (M=6.75, SD=1.52). It should be noted that children start school (and beginformal literacy instruction) at age four in England and Wales, and between the ages of four and five and a half inScotland, therefore school cannot identify difficulties before this. However, 13 parents (27%) reported that schoolhad never noticed their child's reading difficulties. Sixty-seven percent of parents stated that they were the ones toraise concerns and a further 22% said it was a joint process, raising concern with the school. Only four members ofthe panel stated that school raised concerns without initial parental input. Eighty-six percent of parents stated thatthey initiated the diagnostic process, and a further 82% of the panel secured a diagnosis themselves, paying for a pri-vate assessment. The length of the diagnostic process varied (range=1 month to 7 years), however, a longer pro-cess was more common (>2 years=61%).HARDINGET AL.510990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
A diverse range of answers resulted from asking parents to define dyslexia, with some describing dyslexia as a‘difficulty with learning and reading’and others describing it as‘different way of learning’. A lot of parents spoke aboutthe different aspects of learning that dyslexia can cause issues with, such as information retrieval, phonologicalprocessing and reading comprehension.When asked about the label of‘dyslexia’many panel members highlighted how the dyslexia label gave theirchild, the school and themselves a greater understanding as to how and why their child was struggling;‘I think it givesan understanding to people, an awareness is always helpful’. The label and diagnosis also gave parents a sense of relief‘Glad we've finally got to the bottom of what is holding him back’. It was also considered important by parents as a labelmeant their children were able to access support‘The diagnosis helped get the right support in school…’or were hope-ful that it would enable future support‘Hope it helps him get more time and input with the school’. However, someparents did still worry about negative connotations around intelligence and being different,‘I don't mind [about thelabel] providing people don't think she lacks intelligence’.Parents were then asked six open questions regarding barriers and support to dyslexia diagnosis:1.What barriers, if any, did you experience with your child's dyslexia diagnosis?Eight different themes were generated from caregiver responses to question one, many barriers focused onmanagement of dyslexia within school, such as lack of appropriate knowledge and resources available‘Teachers inthe mainstream are not adequately equipped’. The financial aspect of dyslexia management and support was also men-tioned. Insufficient funding within school, as well as the cost of private assessment for the family were both identi-fied as barriers. Further themes focused on school's failure to recognise their child's difficulties, with parents statingthat school waited too long before recognising that there was an issue. Both the child's age and out-of-school sup-port masking difficulties were also identified‘School couldn't do much until they reached Key Stage 2’. Schools' failureto recognise dyslexia altogether was another barrier, with some schools reluctant to use the diagnosis for furthersupport‘School did not believe a diagnosis was necessary’. Finally, a lack of good quality communication with schoolwas identified.FIGURE 1Number of panel members, average of dyslexia diagnosis and average English Indices of MultipleDeprivation (IMD) Data at each round of the Delphi survey. Forty-six of 49 parents' data was suitable for computingEnglish indices of deprivation at Round 1. Twenty-seven of 29 parent's data was suitable for computing Englishindices of deprivation at Round 2. Twenty-one of 22 parent's data was suitable for computing English indices ofdeprivation at Round 3.6HARDINGET AL.10990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
2.What do you feel could be done to help remove these barriers?Eight themes were developed from caregiver responses to question two. School remained a focus, with bettertraining,‘the school requires more training on dyslexia in order to remove these barriers’, and funding,‘better funding andaccess to support’, identified as potential solutions. Parents highlighted how schools could better recognise a diagno-sis of dyslexia and utilise this to provide support for children. Early screening for children as well as a morestandardised process for diagnosis were two further themes generated from panel responses that focused on thediagnostic process‘Reintroduce the formal dyslexia assessment and diagnosis [of dyslexia]’. Parents discussed the needfor dyslexia to be more widely understood and discussed, beyond the school and home‘greater awareness to removeany stigma and show positive side’.3.What support or treatment, if any, is provided for your child?A range of different treatments and types of support were identified from response to question three, includingspecialist technology; coloured overlays, lenses and rulers; differentiated class work and additional time in assess-ments. Other in school support was highlighted by panel members, including additional one-to-one or small group lit-eracy support, dyslexia specific interventions as well as an Individual Education Plan in place.1Out-of-schoolinterventions were also cited by parents, such as private tuition and speech and language therapy.4.Who provides this?Parents, teachers, teaching assistants, SENDCOs2and parents themselves were all identified as providers of sup-port. Further providers were private tutors and speech and language therapists. Many responses stated that parentswere the only or main provider of support for their child‘We have provided most of the support’.5.Is there any support you would like for you child that is not currently made available to them?The use of technology, one-to-one support and extra time were all themes identified when parents were askedabout the support they desired. Additional teaching resources, support from a teacher with specialist training, andemotional support were prominent themes identified in analysis.6.What are the barriers, if any, to receiving this support?Lack of access to specialist dyslexia support as well as a general lack of teacher knowledge, lack of funding inschools and pressure on school to meet curriculum targets were all themes identified when parents were askedabout barriers to receiving support.4.3|Round 2Parents were asked to rank the themes developed from Round 1 responses around barriers to diagnosis. A lack ofknowledge and resources in schools were ranked as the greatest barriers to diagnosis, closely followed by schools'reluctance to recognise dyslexia. Factors ranked lower by the panel were additional support at home masking diffi-culties and poor communication between school and home. Financially related barriers were, on average, rankedaround the middle alongside the child's age. However, consensus for the rankings at the second round remained rela-tively low, with only the lowest ranking for‘Additional support masking difficulties’approaching consensus at 68%.HARDINGET AL.710990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
When asked to identify the most important solutions for removing the aforementioned barriers, better trainingfor teachers in order to ensure recognition of dyslexia was ranked top (37% agreement). Better training and fundingfor schools were ranked second and third, but again there were lower levels of agreement. Early screening for all chil-dren and a more standardised diagnostic process were ranked in the middle, followed by improving communicationbetween schools and parents. Greater awareness and understanding of dyslexia in the general population andschools' ability to use private diagnoses to prompt further support were ranked as the least important solutions tobarrier in the second round. All solutions were carried on to the third round as consensus for ranking was notreached.Panellists gave varied answers when asked about the types of support their child received. Seventy percent ofpanel members listed additional one-to-one or small group support as an intervention their child received, making itthe most common form of support. Coloured overlays and lenses were also widely offered with over half of thepanel's children (56.67%) receiving these. Speech and Language therapy was the least common (6.67%). Dyslexiaspecific intervention in school was also less widely offered, with only 30% of parents having indicated it as a supporttheir child currently received. This question was very individualised, as outlined in Figure2, and therefore it was notappropriate to ask for consensus and answers were not carried on to the third round.Panel members also were asked to indicate the frequency of support from the sources identified in Round 1. Par-ents were the greatest providers of support for their children, as all panel members said they always (72.41%) or fre-quently (27.59%) provided support for their children. Teaching staff followed, 48% of parents listed teachers as‘always’or‘frequently’providing support, however a higher amount (62%) listed teaching assistants as‘always’or‘frequently’providing support. Over half of the parents (55.1%) stated that their child received private tuition,always or frequently. In line with the small number of parents who cited speech and language therapy as a supporttheir child received, 79.31% of panel members stated their child had never received support from speech and lan-guage therapists (Figure3).Panellists were asked to identify the means of support they believed to be most helpful, from the support theycurrently received and the support they desired for their child identified in the first round. Support from a teacher orteaching assistant, with specialist training, was ranked as the most helpful. One-to-one support with literacy closelyfollowed and emotional support for their child came third. Technological support and additional teaching resourceswere ranked towards the bottom for helpfulness according to group rankings. Extra time to complete assessmentsand tasks in class was ranked as the least helpful means of support for dyslexia by the panel.40%50%50%56.67%70%30%46.67%6.67%40%0% 10% 20% 30% 40% 50% 60% 70% 80%Specialist technology in schoolPrivate/self-funded tuitionDifferentiated class workColoured overlays/lenses/rulersAdditional literacy supportDyslexia specific intervention in schoolAdditonal time in assessmentsSpeech and language therapyIndivididual Education Plan (IEP)% of PanelTypes of SupportFIGURE 2The different types of support the children of the panel receive.8HARDINGET AL.10990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
Finally, parents ranked potential barriers to the support they most desired for their child from the themes devel-oped in round one. Lack of funding within school was the greatest barrier to support, followed by lack of access to adyslexia specialist. While lack of initial teacher training came third in group rankings, the mean and median rankingswere very similar to lack of funding and lack of access; suggesting these three were similarly ranked. Pressure onschool to meet targets was ranked as the least important potential barrier.4.4|Round 3In the final round, parents were sent individualised surveys comprising 27 statements for ranking, for the four differ-ent questions from round two. Panel members were presented with their own individual rankings as well as the aver-age group rankings. The parents were asked to reconsider their own ranking from the previous round in light of thegroup response and were reminded that the aim of research was to gain a consensus. Consensus was considered tobereachedwhen≥70%ofthepanelagreedonranking,inlinewithpreviousDelphistudies(Okoli&Pawlowski,2004). Consensus levels significantly improved from round two.Table1outlines rankings of barriers to diagnosis in round three. Insufficient funding within schools was thegreatest barrier to diagnosis, approaching consensus at 68%. Adopting a‘wait and see’approach was ranked the sec-ond greatest barrier, although this failed to reach accepted levels of consensus (57% agreement). A lack of knowl-edge around dyslexia in schools and schools' reluctance to recognise the importance of a diagnosis were the nextgreatest barriers. Both barriers were near to reaching consensus with 65% and 68% group agreement. Cost of payingfor a private assessment was ranked fifth, which reached consensus at 73%. Lack of appropriate resources for a dys-lexic learner followed, approaching consensus at 68% group agreement. Additional support masking difficulties(95%) and poor communication between the family and schools (90%) reached very high levels of group agreementas the least important barriers to diagnosis.Consensus was reached for all but one ranking position for the importance of solutions for removing barriers todiagnosis as shown in Table2. Better training for teachers was ranked as the most important approach to removingbarriers to diagnosis (81% agreement), closely followed by better training for schools (86% agreement). Additionalfunding for school and early screening followed, both reaching consensus at 73% agreement. The middle ranking for‘a more standardised diagnostic process’was the only solution that had a ranking agreement below 70%. However,the closely aligned mean and median suggest most panellists were ranking this in the middle of the table and werealso reaching agreement at 64% group consensus. The three least important solutions; better communication0%20%40%60%80%100%Class TeacherClass Teaching AssistantSENDCOSpeech and Language TherapistPrivate TutorParents% of Parents' Survey ResponsesSource of SupportAlways ProvidedFrequently ProvidedSomemes ProvidedOccasionally ProvidedNever ProvidedFIGURE 3The frequency of provision from different sources of support.HARDINGET AL.910990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
between school and parent; use of private diagnosis by schools and greater public awareness of dyslexia all reachedconsensus.A strong level of consensus for the top and bottom rankings was found for the helpfulness of different types ofsupport (Table3). Support from a teacher with relevant training was ranked as the most helpful (91% agreement),ahead of one-to-one support (73% consensus). Emotional support, ranked third most helpful, was approaching con-sensus at 68%. Technology and additional teaching resources were ranked in the middle but failed to reach consen-sus, both at 59% agreement. Extra time in class and assessments was ranked as the least helpful method of supportwith a strong level of consensus (77%).All four barriers to support achieved high levels of group agreement as shown in Table4. Lack of sufficientfunding in schools (91% agreement) was considered to be the greatest barrier to support, followed by a lack ofaccess to a dyslexia specialist within school (91% agreement). Lack of initial training and development in dyslexia andpressure on schools to meet targets were ranked third and fourth, both achieving consensus.TA BLE 1Group ranking of barriers to diagnosis, from greatest to smallest, for Round 3.RankingBarriers to diagnosisMeanMedianConsensus onranking (%)1Insufficient funding within school to fund an assessment1.51682Childs age, school adopting a‘wait and see’approach1.952573A lack of knowledge in schools about dyslexia2.823654School reluctant to recognise, believing a diagnosis is not necessaryfor support4.364685Cost of paying for a private assessment4.775736A lack of resources appropriate for a dyslexic learner5.776687Poor communication between school and family6.867908Additional support masking difficulties7.95895Note: 1=greatest/8=smallest.TA BLE 2Group rankings of solutions to the removal of barriers to diagnosis, from most to least important,for Round 3.RankingSolutions to removal of barriersMeanMedianConsensus onranking (%)1Better training for teachers so they can recognise dyslexia1.271812Better training for schools in the early signs of dyslexia, toavoid‘waiting and seeing’1.952863Additional funding for schools3.453734Early screening for children3.914735More standardised diagnostic process5.095646Better communication between school and parents5.736777Schools using private diagnoses to prompt further assessmentor provision of support6.957828Greater awareness and understanding of dyslexia in the generalpopulation7.64886Note: 1=most important/8=least important.10HARDINGET AL.10990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
5|DISCUSSIONIt is clear the current system for identifying and supporting children with dyslexia requires improvement and that lit-tle progress has been made between major reports exploring dyslexia management. This study aimed to use the Del-phi method to arrive at a consensus as to the most significant barriers to diagnosis and support experienced byparents of UK children with a diagnosis of dyslexia. A further aim was to identify potential for removing these bar-riers, from the perspective of parents who have been through the process in recent years.In the final round of the Delphi survey, 22 parents ranked different barriers and solutions to the diagnosis ofdyslexia and access to support. Parents identified significant school-based barriers to diagnosis including funding foran assessment, their child's age combined with the use of a‘wait and see’approach, and lack of knowledge arounddyslexia. The panel was also asked to rank the most important solutions to remove these barriers. Parents rankedbetter training for teachers as most important, followed by better training for schools to avoid the aforementioned‘wait and see’approach. Better funding for schools then followed, ranked as the third most important solution.When asked what means of support was most helpful for their child, support from a teacher with sufficient dys-lexia training was ranked most helpful. One-to-one support with literacy and emotional support for their child wereranked as second and third most helpful by parents. Panel members identified lack of funding in schools as thegreatest barrier to accessing these means of support. Lack of access to a dyslexia specialist and lack of sufficienttraining for teachers on dyslexia were also ranked as important barriers by parents, to their child getting support.Funding, or lack thereof, remained a consistent theme throughout parental responses. Lack of funding wasranked as the greatest barrier both for obtaining a diagnosis and for access to appropriate and helpful support.School leaders and staff have identified children with SEND as those most negatively affected by financial pressureswithin schools (Ofsted,2020). The government are attempting to address concerns of underfunding in education,with commitment to a£7.1 billion increase in 2019 (HM Treasury,2019) and another recent pledge of a further£1billion investment in SEN in 2022–2023 (HM Government,2022). However, as previous reports highlighted,TA BLE 3Group rankings of the means of support offered to children, from most to least helpful, for Round 3.RankingMeans of supportMeanMedianConsensus on ranking (%)1Support from teacher with specialist dyslexia training1.091912One-to-one support with literacy2.232733Emotional support for child3.53684Technology—laptop or software3.774595Additional teaching resources4.735596Extra time to complete tasks in class and assessments5.68677Note: 1=most helpful/6=least helpful.TA BLE 4Group rankings for the barriers to support, from the greatest to the smallest, for Round 3.RankingBarriers to supportMeanMedianConsensus onranking (%)1Lack of funding in school1.181912Lack of access to a dyslexia specialist22913Lack of initial training and continued professional developmentin dyslexia3.043864Pressure on school to meet targets3.77486Note: 1=greatest/8=smallest.HARDINGET AL.1110990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
increased spending does not necessarily solve the issues children with dyslexia face and needs to be paired withappropriate spending and provision (Education Committee,2019; Ofsted,2020). Government spending appears tobe both inadequate and unsustainable for supporting children with additional needs and the gap between provisionand need is widening (Education Committee,2019). Recent findings confirm these concerns, with a lack of cohesive-ness and consistency in SEND provision resulting in little change in outcomes for young people despite unprece-dented spending (HM Government,2022).Lack of sufficient training for teachers and lack of knowledge around dyslexia in schools were both highlightedas significant barriers to both diagnosis and support. Better teacher training was considered the greatest solution toovercoming barriers to diagnosis, and support from a teacher with specialist dyslexia training was identified as themost helpful means of support for children by parents in the study. In a survey of teachers, Knight (2018) found poorcoverage of dyslexia in initial training as well as a lack of opportunity for continued professional development in spe-cialist dyslexia training. A national survey with newly qualified teachers also found only 40% felt prepared to assessprogress in SEND pupils (Ginnis et al.,2018).Despite the DfE commitment to invest in professional development in dyslexia for teachers in 2016 (DfE,2016),there still seems to be a lack of improvement. The Driver Youth Trust (Driver Youth Trust [DYT],2020) report lookedat Rose's recommendations (Rose,2009) and sought to explore what specialist support was available in theUnited Kingdom. It found that while the number of specialist teachers had increased, the system remained unclearand confusing with specialists rarely employed in state schools and frequently underutilised (DYT,2020).The interventions and support provided by school post diagnosis were also viewed by parents as sub-par in thisstudy. Visual-based interventions were much more commonly provided, with over half of parents (56.67%) identify-ing this as a form of support their child received. This raises additional concern about school and teacher knowledgeas there is a relatively small evidence base for the effectiveness of coloured overlays and lenses (P. G. Griffithset al.,2016). It is important to note that we did not ask whether such support materials were provided by school orparents themselves. While parents agreed they would like teachers to have a better understanding of dyslexia, therange of misinformation which still dominates the field could lead to parents having inaccurate information aboutsupport their child may benefit from. Many companies exist in the United Kingdom selling coloured overlays andlenses to parents of dyslexic children, despite the limited evidence base. It is therefore important to interpret parents'perceptions of teacher knowledge with caution, as parents themselves may indeed hold some misinformation aboutdyslexia as fact. Though there may still be a need for evidence based training around dyslexia, evidence suggeststeachers have a lack of knowledge on the phonological basis when asked about interventions for dyslexia(Knight,2018).The diagnostic process was found to be a challenge for many of the families in this study, as 86% of parents inthe panel initiated the process of diagnosis and 82% paid for a diagnosis to be done privately. These findings mirrorthat of the Educational Cost of Dyslexia Report (BDA,2019b), which found that 80% of young people with dyslexiaare not identified in school. With a lack of funding and opportunity for diagnosis in schools, parents are having tooutsource and personally fund diagnoses, feeding into additional barriers and further inequalities. Parents in thisstudy were more economically advantaged than the average population, which may account for the high rate of pri-vate diagnoses. For families who cannot afford this privately funded route, a dyslexia diagnosis may be further del-ayed or not realised. This inequity in diagnosis was highlighted by Knight and Crick's (2021) findings that higherincome and SES predicted dyslexia diagnosis.Another barrier to diagnosis was a child's age, ranked as the second most important barrier because of the‘waitand see’approach many schools take. There was wide variation in the length of diagnosis reported by parents(1 month to 6 years), but a longer (>2 years) and more arduous process was more commonly experienced. Bettertraining in schools around dyslexia, to avoid this approach, was ranked as the second most important solution toremoving barriers to diagnosis. Again this finding mirrored the BDA report, which found a major barrier to diagnosisidentified by parents was that their child had to be‘at least two years behind their peers’(BDA,2019b). Early12HARDINGET AL.10990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
identification is key as evidence has found that earlier intervention helps to facilitate more successful outcomes(Y. Griffiths & Stuart,2013; Snowling & Hulme,2011).Ross (2019) suggests that schools act as a gateway to support and therefore need to communicate with parentsto facilitate a cohesive team between school and parents. However, all parents in this study‘always’(72.41%) or‘frequently’provided support to their child, whereas only 30% of the panel said that teachers‘always’provided sup-port. This highlights the lack of cohesiveness between school and home and the increased burden on parents to pro-vide support that schools are failing to offer. The Human Cost of Dyslexia Report (BDA,2019a) found that 95% ofparents felt they lacked the skills and knowledge to support their children and 77% stated they felt exhausted withdealing with their child's dyslexia. This pressure, which can be found from feeling unequipped or overloaded amongmany reasons, has been found to lead to increased tensions and worries within families (Knight,2018).The parents in our study were also concerned about the emotional toll of dyslexia for their children, highlightingemotional support as important for their child. This echoes previous literature on parents' dissatisfaction with schoolprovision and worries about how this may negatively affect their child's confidence (BDA,2019a). Recent literaturehighlights the importance of considering the mental health of young people with dyslexia and how support and thelabel of dyslexia is framed (Reid & Mackay,2022). Young people with undiagnosed dyslexia may be particularly vul-nerable to unhelpful coping responses, negative self-talk and increased distress (Morgan & Sideridis,2013), under-lining the need for a systematic diagnosis process and proficient support.‘Dyslexia Friendly’schools is an initiative developed by the BDA to give accreditation to schools that made sig-nificant efforts to facilitate the learning of children with dyslexia (BDA,2017). To gain this accreditation schools mustdemonstrate evidence of teacher education as well as the provision of evidence-based interventions and inclusiveclassrooms (Maxwell,2019). The Rose Report (2009) found that a fifth of authorities had gained this accreditation,but this survey along with subsequent reports (BDA,2019a; DYT,2020) seems to signal that major tenants of thisscheme are still found to be lacking in many schools. The Human Cost of Dyslexia Report (BDA,2019a) also recom-mends that schools should invest in resources and training to meet this Dyslexia Friendly standard. An importantfocus for future educational policy is the enforcement of this accreditation across schools in the United Kingdom asitencapsulatesmanyoftheareashighlightedbyparentsasinneedofimprovement,fromtrainingtocommunication.5.1|Study strength and limitationsHigh group agreement was achieved on solutions to removing barriers to diagnosis, with only one of the eight state-ments not achieving group consensus. When parents were asked to rate the helpfulness of the support offered tochildren, there was group consensus on the most and least helpful factors. Identifying the greatest barriers to sup-port was an area with high levels of consensus for all four generated themes. The speed of analysis and distributionof iterations also meant that little time elapsed between each round, which encouraged participation and resulted ingood size sample at the final round.A limitation of this study is the potential lack of representativeness of the parents who took part. While therewas a variation in social economic background maintained throughout the study (our panel included families rep-resenting the bottom 20% of the deprivation index), the average IMD decile score of the panel for each roundremained around 7. This score indicates, on average, that the panel was more economically advantaged than the gen-eral population, which should be considered when applying the findings to a variety of contexts. This was, however,difficult to avoid due to the inequity prevalent in the diagnosis of dyslexia in the United Kingdom (Knight &Crick,2021). Increased equity in access to diagnosis and support for dyslexia should be a focus in future policy.Future research should also ensure representativeness in the perspectives of families going through the diagnosticprocess, with efforts to ensure seldom-heard voices are represented, particularly due to the amplified impact dyslexiacan have on more disadvantaged children (Macdonald & Deacon,2019).HARDINGET AL.1310990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
The survey also failed to reach consensus on the rankings for a items, as a fourth round could have enabled moreclarification on rankings, but this was beyond the scope of the current study due to time constraints. Of the27 themes generated, 16 reached consensus, with a further 4 approaching consensus (68% group agreement). Bar-riers to diagnosis received the lowest level of consensus, with only the barriers deemed the least significant gainingconsensus. This could be explained by the large variation in the experience of diagnosis. The diagnosis processranged from a month to several years and therefore the barriers faced, and those that parents found the most sub-stantial, are potentially extremely varied.6|CONCLUSIONThis research employed a well-established methodology to gain an in-depth insight into the issues faced by familieswith the management of dyslexia and the ways they could be overcome. The consensus reached on the most impor-tant factors in dyslexia management signifies those most urgently in need of reform from the perspective of parentsin the panel, facilitating recommendations for educational policy most important to the families affected.This Delphi study identified that, from the panel's perspective, the current system for identifying and supporting chil-dren with dyslexia requires major improvement. While these findings cannot be generalised to all parent's experience ofthe dyslexia diagnosis procedure, they offer a valuable insight into the lived experience of the process. The Rose Report(Rose,2009) and other major subsequent reports (BDA,2019a,2019b) identified overarching issues with dyslexia man-agement in the United Kingdom. These reports recommended improving overall knowledge of dyslexia in mainstreamteaching, access to a dyslexia specialist and the development of a system that can help identify and subsequently providequality provision for children with dyslexia (British Dyslexia Association [BDA],2019a,2019b; Rose,2009).Despite efforts to address systemic issues, with SEN reforms (Children and Families Act,2014) and furtherpledges for increasing funding for schools and training (HM Government,2022) parents in this study still highlightedlack of funding as a major barrier to dyslexia diagnosis and support. Furthermore, the issues around teacher trainingand school support highlighted by the parents in this report support previous findings that insufficient training is anongoing issue. The funding and reforms into SEN and dyslexia particularly, while well-intentioned, have not yet ledto better outcomes for children with dyslexia. The lack of cohesiveness and consistency in the system and the lackof guidance provided to local authorities means that the system is still disjointed.The panel of parents in this study highlight that the experience of gaining a diagnosis and accessing further sup-port for their child's dyslexia is still very challenging. Parental voices add an important dimension to inform changesthat need to be made. Their experiences, along with expert opinion and the experience of educational providers, areneeded to help inform the development of a clear and structured framework for local authorities to use governmentfunding sustainably and effectively. In turn, this should help to create diagnostic systems and support that are easierto access, for both families and schools, and consistently provided.CONFLICT OF INTEREST STATEMENTThe authors declare no conflicts of interest.DATA AVAILABILITY STATEMENTThe data that support the findings of this study may be available on request but due to the personal nature of datathey not publicly available.ORCIDSophie Hardinghttps://orcid.org/0000-0002-2221-6684Emily Oxleyhttps://orcid.org/0000-0002-5736-9808Hannah M. Nashhttps://orcid.org/0000-0002-4357-945X14HARDINGET AL.10990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
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Washburn, E. K., Binks-Cantrell, E. S., & Joshi, R. M. (2014). What do preservice teachers from the USA and the UK knowabout dyslexia?Dyslexia,20(1), 1–18.https://doi.org/10.1002/dys.1459How to cite this article:Harding, S., Chauhan-Sims, M., Oxley, E., & Nash, H. M. (2023). A Delphi studyexploring the barriers to dyslexia diagnosis and support: A parent's perspective.Dyslexia, 1–17.https://doi.org/10.1002/dys.1743HARDINGET AL.1710990909, 0, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/dys.1743 by Test, Wiley Online Library on [14/06/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons LicenseView publication stats