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1.
Health Technol Assess ; 28(39): 1-121, 2024 08.
Artigo em Inglês | MEDLINE | ID: mdl-39207130

RESUMO

Background: Differences in the way autistic children experience the world can contribute to anxiety and stress. Carol Gray's Social Stories™ are a highly personalised intervention to support children by providing social information about specific situations in an individual story. Objectives: This randomised controlled trial aimed to establish whether Social Stories are clinically effective and cost-effective in improving social responsiveness and social and emotional health in children on the autism spectrum in schools. Design: A multisite pragmatic cluster randomised controlled trial comparing Social Stories with care as usual. Setting: Eighty-seven schools (clusters) across Yorkshire and the Humber. Participants: Two hundred and forty-nine children were randomised via a bespoke system hosted at York Trials Unit (129 Social Stories and 120 care as usual). Recruitment was completed in May 2021. Participants were children aged 4-11 years with a diagnosis of autism, alongside teachers, interventionists and caregivers. Recruitment was via schools, NHS trusts, support groups and local publicity. Intervention: The intervention included training for educational professionals and caregivers covering psychoeducation and implementation of Social Stories. Stories were written around contextualised goals around the child's need for social information. Interventionists read the Social Story™ with the child at least six times over 4 weeks during school. Main outcome measure: The primary outcome was the Social Responsiveness Scale-2 completed by teachers at 6 months (the primary end point), which measures social awareness, cognition, communication and behaviour. Data were collected from caregivers and educational professionals at 6 weeks and 6 months through questionnaires. Blinding of participants was not possible. Results: At 6 months, the estimated difference in expected teacher-reported Social Responsiveness Scale-2 T-score (the primary end point) was -1.61 (95% confidence interval -4.18 to 0.96, p = 0.220), slightly favouring the intervention group. The estimated differences for the parent-reported secondary outcomes at 6 months were small and generally favoured the control group except the measure of children's quality-adjusted life-year (+ 0.001, 95% confidence interval -0.032 to 0.035) and parental stress (-1.49, 95% confidence interval -5.43 to 2.46, p = 0.460), which favoured the intervention group. Children in the intervention group met their individual goals more frequently than children who received usual care alone (0.97 confidence interval 0.21 to 1.73, p = 0.012). The intervention is likely to save small costs (-£191 per child, 95% confidence interval -767.7 to 337.7) and maintain a similar quality of life compared to usual care. The probability of Social Stories being a preferred option is 75% if the society is willing to pay £20,000 per quality-adjusted life-year gained. Limitations include considerable disruptions during the coronavirus disease 2019 pandemic. Conclusion: Social Stories are used in schools and represent a low-cost intervention. There is no clinically evident impact on social responsiveness, anxiety and/or depression, parental stress or general health. Benefits were observed for specific behavioural goals as assessed by the teacher, and Social Stories may serve as a useful tool for facilitating dialogue between children and school staff to address specific behavioural challenges. Usage should be at the school's discretion. Future work: Given the uncertainty of the results in light of coronavirus disease 2019, further work to establish the impact of Social Stories is merited. Trial registration: This trial is registered as ISRCTN11634810. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 16/111/91) and is published in full in Health Technology Assessment; Vol. 28, No. 39. See the NIHR Funding and Awards website for further award information.


Autism affects the way children experience the world, and some children find social situations stressful. We wanted to know whether Social Stories™, developed by Carol Gray, helped children with their social skills and behaviour in school and whether they offered value for money. A randomised controlled trial design was used, which gave schools an equal chance of being asked to deliver Social Stories or to continue providing care as usual. Two hundred and forty-nine children from 87 schools took part and we trained school staff and parents to write and deliver Social Stories. We agreed with teachers and parents, what each child needed help with and wrote stories with this in mind. Trained staff read the Social Story with the child at least six times over 4 weeks. Follow-up information was collected from parents and school staff at the start of the study, after 6 weeks and 6 months. After 6 months, teachers completed a questionnaire called the Social Responsiveness Scale-2 which measures the child's social skills. Using these measures, the results suggest that Social Stories do not lead to any significant changes in social skills, mental health, parent stress, general health or quality of life but children in schools allocated to Social Stories met their goal more frequently and incurred less costs than children who did not. Parents and educational professionals found the Social Stories intervention and training beneficial. Based on our findings, Social Stories do not appear to improve general social skills in primary-aged autistic children. Benefits were observed for specific goals, and school-based costs were reduced.


Assuntos
Análise Custo-Benefício , Humanos , Criança , Masculino , Feminino , Pré-Escolar , Transtorno do Espectro Autista/terapia , Instituições Acadêmicas , Saúde Mental , Qualidade de Vida , Emoções , Anos de Vida Ajustados por Qualidade de Vida
2.
Sleep Med X ; 5: 100068, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37033692

RESUMO

Objective: The study aimed to examine sociodemographic, temporal and bedtime routine correlates of parent-reported sleep duration and timing in a biethnic sample of 18 month and 36 month old children from a disadvantaged location. Methods: Between October 2010 and September 2012, parents completed a bespoke three day sleep diary when their child was approximately 18 months (n = 276) and 36 months of age (n = 262) (45.1% South Asian; 54.9% white). Parents reported their child's overnight sleep duration (h/day), the time their child fell asleep, their wake time and their child's bedtime and napping routines. Data were available at both time points for 135 children. Results: In line with previous literature, South Asian children had shorter overnight sleep duration and later sleep and wake times than white children. In both ethnic groups, children slept and woke up later on weekends, and children went to bed earlier and slept longer in winter. In white children only, napping duration was associated with overnight sleep period. No significant associations were found between napping frequency and overnight sleep duration. Based on parent-reported data, children who consistently adhered to regular bedtimes and had set times for sleeping tended to go to sleep earlier, wake earlier and have longer overnight sleep. Conclusions: The data showed parent-reported variation in sleep patterns between two ethnic groups within a single geographical and deprived area. It is important that researchers, clinicians and early years workers are considerate of cultural norms in sleep practices.

3.
Sleep Med Rev ; 34: 82-93, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28065388

RESUMO

In August 2010, concerns were raised about an increase in the incidence rate of narcolepsy diagnosis in children and adolescents. Narcolepsy is a chronic neurological sleep disorder characterised by excessive daytime sleepiness and attacks of muscle weakness which are often precipitated by strong emotions, known as cataplexy. We systematically examined and updated the scientific literature on the consequences of narcolepsy on cognitive function and psychosocial well-being in school-age children. Eight studies published between 2005 and 2015 were eligible for inclusion in this review. Collectively the results provide evidence to suggest that children who develop narcolepsy are at significant risk of cognitive impairment in at least one domain and emotional problems including depression, anxiety and low self-esteem. Children with narcolepsy should be monitored carefully in order to manage and reduce the impact of any impairments present. The existing literature is limited by small sample sizes, lack of appropriate controls and lack of longitudinal data. Future research should aim to address the limitations of the current work and aim to determine the underlying cause of cognitive and psychological impairments. This will enable the design of effective interventions to support children with narcolepsy so that they are able to achieve their full potential.


Assuntos
Cognição/fisiologia , Narcolepsia/complicações , Adolescente , Criança , Proteção da Criança , Depressão/etiologia , Emoções/fisiologia , Humanos , Polissonografia
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