The impact of COVID-19 (Coronavirus) on children and young people with Down syndrome in the United Kingdom

The COVID-19 pandemic had a profound impact across the globe. Evidence suggests children with Special Educational Needs and Disabilities and their families experienced impacts on well-being and disruptions in support from education and health services. This study investigated the impact of measures associated with the COVID-19 pandemic on children and young people (CYP) with Down syndrome in the United Kingdom, specifically changes in speech, language and communication abilities, behavior, social, emotional and mental health and access to education and healthcare services. Forty-six parents/carers of CYP with Down Syndrome (aged 2–25 years) completed an online survey between June and September 2020. Parents/carers frequently reported deterioration in speech, language and communication, literacy and attention skills since the onset of the pandemic. Deterioration in social and emotional wellbeing and behavior, including greater reliance on adults were also reported for some CYP with Down syndrome. Parents reported challenges with home-schooling and reductions in support from education and community services. Preferences for support during COVID-19 were for professional support or from other parents. These findings have implications for the support that is now needed for CYP with Down syndrome and their families and for periods of social restrictions in the future

(Mis)conceptualising themes, thematic analysis, and other problems with Fugard and Potts’ (2015) sample-size tool for thematic analysis

One of us (VC) was having a conversation with a student recently about the origins and history of thematic analysis (TA). The student had read Qualitative Research in Counselling and Psychotherapy (McLeod, 2011), a text which presents TA as a variant of grounded theory. Victoria commented that she thought that TA evolved from content analysis, and therefore predated grounded theory, and discussed her recent discovery of the use of a variant of TA in psychotherapy research in the 1930s-1950s. The student let out a heavy sigh and slumped in her chair, bemoaning her ability to ever fully grasp qualitative research in all its complexity. This reaction is not uncommon. Students learning and implementing qualitative research at times find it bewildering and challenging; simple models of ‘how to do things’ can appear to offer reassuring certainty. But simplified models, especially if based in confidently-presented-yet-partial accounts of the field or an approach, at best obfuscate and at worst lead to poor quality research. In our discipline (psychology), students typically learn about qualitative research only after they have been fully immersed in the norms, values and methods of scientific psychology. Many find it difficult to let go of what we call a ‘quantitative sensibility’. For such students, and others not well versed in a qualitative sensibility, Fugard and Potts’ (2015) tool for determining sample sizes in TA research has great intuitive appeal; it provides a life-raft to cling to in the sea of uncertainty that is qualitative research. Thus, we share Hammersley’s (2015) concerns that their tool will be used by funding bodies and others (e.g. editors, reviewers) to determine and evaluate sample sizes in TA research. We fear it will result in further confusion about, and further distortion of, the assumptions and procedures of qualitative research. We here build on concerns expressed by others (Byrne, 2015; Emmel, 2015; Hammersley, 2015) to briefly highlight why this quantitative model for qualitative sampling in TA is problematic, based on flawed assumptions about TA, and steeped in a quantitative logic at odds with the exploratory and qualitative ethos of much TA research

The ASCEND study: protocol for a feasibility study to evaluate an early social communication intervention for young children with Down syndrome

Background Down syndrome is the most common cause of learning disability, affecting approximately 1 in every 700 babies. Children with Down syndrome have particular difficulties with speech and language. This makes it challenging for them to participate fully in life, access healthcare services and educational opportunities. Improving the language skills of young children with Down syndrome is vital for their future social and emotional well-being and behaviour, and consequently contribution to society. As Down syndrome is detected before or at birth, we can provide support from early on. There are currently no standard interventions for improving the language skills of children with Down syndrome under the age of 36 months. Evidence suggests that early parent-based interventions may be effective in improving language outcomes. In partnership with parents and speech and language therapists, we have co-developed an intervention focusing on early social communication skills and our preliminary work shows that it can lead to better language in children with Down syndrome. Our aim is to carry out a feasibility study which will inform a future pilot/full trial to test whether the intervention is effective in improving language skills before children with Down syndrome start school. Methods This is a two-arm feasibility randomised controlled trial (RCT), with 1:1 randomisation stratified by trial site comparing the intervention (plus standard NHS speech and language therapy) with no intervention (standard NHS speech and language therapy only). We aim to recruit between 25 and 30 children with Down syndrome aged between 11 and 36 months. Sites are defined by the geographical boundaries of three National Health Service (NHS) Trusts. Recruitment is from NHS Speech and Language Therapist caseloads within the 3 Trusts, and self-referral. In the intervention arm, parents/guardians will receive brief training on the parent-based intervention and a manual to follow with their child for 10 weeks. The children’s language and early communication skills and family health outcomes will be assessed by a blinded assessor at baseline, post-intervention and 6 month follow-up. Questionnaire and semi-structured interviews will explore the acceptability of the intervention to parents and SLTs. Discussion The feasibility study’s outcomes will determine whether it would be viable to progress to a full-trial and whether adjustments need to made to the procedures, data collection methods, intervention delivery and the intensity of support needed. We want to assess whether our early intervention can be delivered and rolled out through NHS Speech and Language Therapy (SLT) Services. We anticipate that NHS SLT Services will need to make ongoing changes due to the COVID-19 pandemic, so it is likely that we will need to make adjustments for the definitive trial. We will also calculate descriptive statistics of the language outcome measure which we will use for any future sample size calculation

Editorial Perspective: Speaking up for developmental language disorder - the top 10 priorities for research

Developmental language disorder (DLD) is one of the most common neurodevelopmental conditions, yet is chronically underserved, with far fewer children receiving clinical services than expected from prevalence estimates, and very little research attention relative to other neurodevelopmental conditions of similar prevalence and severity. This editorial describes a research priority-setting exercise undertaken by the Royal College of Speech and Language Therapists, which aims to redress this imbalance. From consultations with researchers, practitioners and individuals with lived experience, 10 research priorities emerge. Our goal is to share these priorities with the wider research community, to raise awareness and encourage research collaboration to improve outcomes for young people with DLD

The effectiveness of classroom vocabulary intervention for adolescents with language disorder

Purpose Phonological-semantic intervention has been shown to be effective in enhancing the vocabulary skills of children with language disorder in small-group or individual settings. Less is known about vocabulary interventions for adolescents with language disorder in whole-class models of delivery. The current study investigated the effectiveness of phonological-semantic vocabulary intervention for adolescents with language disorder, delivered by secondary school teachers within science lessons. Methods Seventy-eight adolescents with language disorder, aged 11 – 13 years, were taught science curriculum words by teachers in class, under two conditions: 1) 10 words taught through usual teaching practice; and 2) 10 matched words taught using an experimental intervention known as Word Discovery, which embedded phonological-semantic activities into the teaching of the syllabus. Ten similar control words received no intervention. Word knowledge was assessed pre-intervention, post-intervention, and follow-up. Results At pre-intervention, measures of depth of word knowledge and expressive word use did not differ between usual teaching practice and experimental words. At post-intervention, depth of knowledge of experimental words was significantly greater than that of usual teaching practice words. This significant advantage was not maintained at follow-up, although depth of knowledge for experimental words remained significantly higher at follow-up than at preintervention. At post-intervention, expressive use of experimental words was significantly greater than that of usual teaching practice words, and this significant difference was maintained at follow-up. There was no change in students’ depth of knowledge or expressive use of no-intervention words over time, confirming that the findings were not due to maturity or practice effects. Conclusion The experimental intervention was more effective than usual teaching practice in increasing the word knowledge of participants. Clinical and teaching implications include the importance of intervening during the adolescent years, with classroom vocabulary intervention being a viable option for collaborative teacher and speech and language therapy/pathology practice

Evaluating ‘Enhancing Pragmatic Language skills for Young children with Social communication impairments’ (E-PLAYS): a feasibility cluster-randomised controlled trial

Background This article reports the results from a feasibility study of an intervention (‘E-PLAYS’) aimed at supporting children who experience difficulties with social communication. E-PLAYS is based around a dyadic computer game, which aims to develop collaborative and communication skills. A pilot study found that when E-PLAYS was delivered by researchers, improvements on communication test scores and on collaborative behaviours were observed. The aim of this study was to ascertain the feasibility of running a full-scale trial to test the effectiveness of E-PLAYS in a National Health Service (NHS) setting with delivery by speech and language therapists and teaching assistants. Methods The study was a two-arm feasibility cluster-randomised controlled trial of the E-PLAYS intervention with a treatment as usual control arm. Data relating to recruitment and retention, treatment fidelity, acceptability to participants, suitability of outcomes and feasibility of collecting health economic measures and of determining cost-effectiveness were collected. Speech and language therapists selected suitable children (ages 4–7 years old) from their caseload. E-PLAYS intervention (experimental group) was then delivered by teaching assistants overseen by speech and language therapists. The control group received usual care. Assessments included blinded language measures and observations, non-blinded teacher-reported measures of peer relations and classroom behaviour and non-blinded parent-reported use of health and education resources and quality of life. Results Planned recruitment was for 70 children, in the event, 50 children were recruited which was sufficient for feasibility purposes. E-PLAYS was very highly rated by children, teaching assistants and speech and language therapists and treatment fidelity did not pose any issues. We were able to collect health economic data which suggests that E-PLAYS would be a low-cost intervention. Conclusion Based on recruitment, retention and adherence rates and our outcome measures, a full-scale randomised controlled trial estimated appears feasible and warranted to assess the effectiveness of E-PLAYS for use by the NHS and schools. Trial registration ISRCTN 14818949 (retrospectively registered)

Enhancing Pragmatic Language skills for Young children with Social communication difficulties (E-PLAYS-2) trial: study protocol for a cluster-randomised controlled trial evaluating a computerised intervention to promote communicative development and collaborative skills in young children

Background A number of children experience difficulties with social communication and this has long-term deleterious effects on their mental health, social development and education. The E-PLAYS-2 study will test an intervention (‘E-PLAYS’) aimed at supporting such children. E-PLAYS uses a dyadic computer game to develop collaborative and communication skills. Preliminary studies by the authors show that E-PLAYS can produce improvements in children with social communication difficulties on communication test scores and observed collaborative behaviours. The study described here is a definitive trial to test the effectiveness and cost-effectiveness of E-PLAYS delivered by teaching assistants in schools. Methods The aim of the E-PLAYS-2 trial is to establish the effectiveness and cost-effectiveness of care as usual plus the E-PLAYS programme, delivered in primary schools, compared to care as usual. Cluster-randomisation will take place at school level to avoid contamination. The E-PLAYS intervention will be delivered by schools’ teaching assistants. Teachers will select suitable children (ages 5–7 years old) from their schools using guidelines provided by the research team. Assessments will include blinded language measures and observations (conducted by the research team), non-blinded teacher-reported measures of peer relations and classroom behaviour and parent-reported use of resources and quality of life. A process evaluation will also include interviews with parents, children and teaching assistants, observations of intervention delivery and a survey of care as usual. The primary analysis will compare pragmatic language scores for children who received the E-PLAYS intervention versus those who did not at 40 weeks post-randomisation. Secondary analyses will assess cost-effectiveness and a mixed methods process evaluation will provide richer data on the delivery of E-PLAYS. Discussion The aim of this study is to undertake a final, definitive test of the effectiveness of E-PLAYS when delivered by teaching assistants within schools. The use of technology in game form is a novel approach in an area where there are currently few available interventions. Should E-PLAYS prove to be effective at the end of this trial, we believe it is likely to be welcomed by schools, parents and children. Trial registration ISRCTN 17561417, registration date 19th December 2022. Protocol version: v1.1 19th June 2023

Social, emotional, and behavioral functioning of secondary school students with low academic and language performance: perspectives from students, teachers, and parents

Adolescence is a time of transition when young people with language difficulties are at increased risk of experiencing social, emotional, and behavioral difficulties (SEBD). Most studies of social, emotional, and behavioral functioning (SEBF) in individuals with language difficulties focus on children with a clinical diagnosis of language impairment. This study explores SEBF in a nonclinical group of 12-year-old students with low educational and language performance from their own perspectives and those of their parents and teachers

Imaging Modality and Frequency in Surveillance of Stage I Seminoma Testicular Cancer: Results From a Randomized, Phase III, Noninferiority Trial (TRISST)

PURPOSE: Survival in stage I seminoma is almost 100%. Computed tomography (CT) surveillance is an international standard of care, avoiding adjuvant therapy. In this young population, minimizing irradiation is vital. The Trial of Imaging and Surveillance in Seminoma Testis (TRISST) assessed whether magnetic resonance images (MRIs) or a reduced scan schedule could be used without an unacceptable increase in advanced relapses. METHODS: A phase III, noninferiority, factorial trial. Eligible participants had undergone orchiectomy for stage I seminoma with no adjuvant therapy planned. Random assignment was to seven CTs (6, 12, 18, 24, 36, 48, and 60 months); seven MRIs (same schedule); three CTs (6, 18, and 36 months); or three MRIs. The primary outcome was 6-year incidence of Royal Marsden Hospital stage ≥ IIC relapse (> 5 cm), aiming to exclude increases ≥ 5.7% (from 5.7% to 11.4%) with MRI (v CT) or three scans (v 7); target N = 660, all contributing to both comparisons. Secondary outcomes include relapse ≥ 3 cm, disease-free survival, and overall survival. Intention-to-treat and per-protocol analyses were performed. RESULTS: Six hundred sixty-nine patients enrolled (35 UK centers, 2008-2014); mean tumor size was 2.9 cm, and 358 (54%) were low risk (< 4 cm, no rete testis invasion). With a median follow-up of 72 months, 82 (12%) relapsed. Stage ≥ IIC relapse was rare (10 events). Although statistically noninferior, more events occurred with three scans (nine, 2.8%) versus seven scans (one, 0.3%): 2.5% absolute increase, 90% CI (1.0 to 4.1). Only 4/9 could have potentially been detected earlier with seven scans. Noninferiority of MRI versus CT was also shown; fewer events occurred with MRI (two [0.6%] v eight [2.6%]), 1.9% decrease (-3.5 to -0.3). Per-protocol analyses confirmed noninferiority. Five-year survival was 99%, with no tumor-related deaths. CONCLUSION: Surveillance is a safe management approach-advanced relapse is rare, salvage treatment successful, and outcomes excellent, regardless of imaging frequency or modality. MRI can be recommended to reduce irradiation; and no adverse impact on long-term outcomes was seen with a reduced schedule