Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low- and middle-income countries: a review of reviews / Gauri DIVAN in Journal of Child Psychology and Psychiatry, 62-5 (May 2021)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 62-5 (May 2021) . - p.514-535 Titre : Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low- and middle-income countries: a review of reviews Type de document : Texte imprimé et/ou numérique Auteurs : Gauri DIVAN, Auteur ; Supriya BHAVNANI, Auteur ; Kathy LEADBITTER, Auteur ; Ceri ELLIS, Auteur ; Jayashree DASGUPTA, Auteur ; Amina ABUBAKAR, Auteur ; Mayada ELSABBAGH, Auteur ; Syed Usman HAMDANI, Auteur ; Chiara SERVILI, Auteur ; Vikram PATEL, Auteur ; Jonathan GREEN, Auteur Article en page(s) : p.514-535 Langues : Anglais (eng) Mots-clés : Autism  detection gap  low- and middle-income countries  low-resource settings  scoping review  treatment gap Index. décimale : PER Périodiques Résumé : BACKGROUND: Autism presents with similar prevalence and core impairments in diverse populations. We conducted a scoping review of reviews to determine key barriers and innovative strategies which can contribute to attaining universal health coverage (UHC), from early detection to effective interventions for autism in low- and middle-income countries (LAMIC). METHODS: A systematic literature search of review articles was conducted. Reviews relevant to the study research question were included if they incorporated papers from LAMIC and focused on children ( En ligne : http://dx.doi.org/10.1111/jcpp.13404 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=445 [article] Annual Research Review: Achieving universal health coverage for young children with autism spectrum disorder in low- and middle-income countries: a review of reviews [Texte imprimé et/ou numérique] / Gauri DIVAN, Auteur ; Supriya BHAVNANI, Auteur ; Kathy LEADBITTER, Auteur ; Ceri ELLIS, Auteur ; Jayashree DASGUPTA, Auteur ; Amina ABUBAKAR, Auteur ; Mayada ELSABBAGH, Auteur ; Syed Usman HAMDANI, Auteur ; Chiara SERVILI, Auteur ; Vikram PATEL, Auteur ; Jonathan GREEN, Auteur . - p.514-535. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 62-5 (May 2021) . - p.514-535 Mots-clés : Autism  detection gap  low- and middle-income countries  low-resource settings  scoping review  treatment gap Index. décimale : PER Périodiques Résumé : BACKGROUND: Autism presents with similar prevalence and core impairments in diverse populations. We conducted a scoping review of reviews to determine key barriers and innovative strategies which can contribute to attaining universal health coverage (UHC), from early detection to effective interventions for autism in low- and middle-income countries (LAMIC). METHODS: A systematic literature search of review articles was conducted. Reviews relevant to the study research question were included if they incorporated papers from LAMIC and focused on children ( En ligne : http://dx.doi.org/10.1111/jcpp.13404 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=445

Developmental trajectories in infants and pre-school children with Neurofibromatosis 1 / Hannah SLEVIN in Molecular Autism, 15 (2024)  

Public ISBD [article]  inMolecular Autism > 15 (2024) . - 45p. Titre : Developmental trajectories in infants and pre-school children with Neurofibromatosis 1 Type de document : Texte imprimé et/ou numérique Auteurs : Hannah SLEVIN, Auteur ; Fiona KEHINDE, Auteur ; Jannath BEGUM-ALI, Auteur ; Ceri ELLIS, Auteur ; Emma BURKITT-WRIGHT, Auteur ; Jonathan GREEN, Auteur ; Mark H. JOHNSON, Auteur ; Greg PASCO, Auteur ; Tony CHARMAN, Auteur ; Emily J. H. JONES, Auteur ; Shruti GARG, Auteur ; EDEN-STAARS TEAM, Auteur Article en page(s) : 45p. Langues : Anglais (eng) Mots-clés : Humans  Neurofibromatosis 1  Infant  Female  Male  Child, Preschool  Cognition  Child Development  Attention Deficit Disorder with Hyperactivity/diagnosis  Prospective Studies  Autistic Disorder/diagnosis  Adhd  Autism  Children  Cohort  Nf1  Neurofibromatosis  Trajectories  has received royalties from Sage Publications and Guilford Publications. The  other authors have no conflicts of interest to disclose. Index. décimale : PER Périodiques Résumé : BACKGROUND: Children with Neurofibromatosis 1 (NF1) show cognitive, behavioural and social differences compared to their peers. However, the age and sequence at which these differences begin to emerge is not fully understood. This prospective cohort study examines the cognitive, behavioural, ADHD trait and autism symptom development in infant and pre-school children with NF1 compared with typically developing (TD) children without a family history of neurodevelopmental conditions. METHODS: Data from standardised tests was gathered at 5, 10, 14, 24 and 36 months of age (NF1 n = 35, TD n = 29). Developmental trajectories of cognitive (Mullen Scales of Early Learning, MSEL) and adaptive behavioural (Vineland Adaptive Behavior Scales, VABS) development from 5 to 36 months were analysed using linear mixed modelling. Measures of ADHD (Child Behavior Checklist) and autism traits (ADOS-2, BOSA-MV and ADI-R) were assessed at 24 and 36 months. RESULTS: The developmental trajectory of cognitive skills (all domains of the MSEL) and behavioural skills (four domains of the VABS) differed significantly between NF1 and TD groups. Post-hoc tests demonstrated that the NF1 participants scored significantly lower than TD participants at 24 months on all MSEL and VABS domains. The NF1 cohort demonstrated higher mean autism and ADHD traits at 24 months and 14% of the NF1 cohort met a research diagnostic classification for autism at 36 months. LIMITATIONS: The study has a relatively small sample size due to variable retention and rolling recruitment. Due to limitations imposed by the COVID-19 pandemic, we utilised the Brief Observation of Symptoms of Autism for Minimally Verbal children (BOSA-MV) for some participants, which was administered online and may not gather as accurate a picture of traits as ADOS-2. The BOSA-MV was utilised for 41% of participants with NF1 at 36 months compared to 11% at 24 months. This may explain the reduction in the percentage of children with NF1 that met autism criteria at 36 months. CONCLUSIONS: By 24 months of age, the NF1 cohort show lower cognitive skills and adaptive behaviour and higher levels of autism and ADHD traits as compared to TD children. This has implications for developmental monitoring and referral for early interventions. TRIAL REGISTRATION: Not applicable. En ligne : https://dx.doi.org/10.1186/s13229-024-00621-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=538 [article] Developmental trajectories in infants and pre-school children with Neurofibromatosis 1 [Texte imprimé et/ou numérique] / Hannah SLEVIN, Auteur ; Fiona KEHINDE, Auteur ; Jannath BEGUM-ALI, Auteur ; Ceri ELLIS, Auteur ; Emma BURKITT-WRIGHT, Auteur ; Jonathan GREEN, Auteur ; Mark H. JOHNSON, Auteur ; Greg PASCO, Auteur ; Tony CHARMAN, Auteur ; Emily J. H. JONES, Auteur ; Shruti GARG, Auteur ; EDEN-STAARS TEAM, Auteur . - 45p. Langues : Anglais (eng) in Molecular Autism > 15 (2024) . - 45p. Mots-clés : Humans  Neurofibromatosis 1  Infant  Female  Male  Child, Preschool  Cognition  Child Development  Attention Deficit Disorder with Hyperactivity/diagnosis  Prospective Studies  Autistic Disorder/diagnosis  Adhd  Autism  Children  Cohort  Nf1  Neurofibromatosis  Trajectories  has received royalties from Sage Publications and Guilford Publications. The  other authors have no conflicts of interest to disclose. Index. décimale : PER Périodiques Résumé : BACKGROUND: Children with Neurofibromatosis 1 (NF1) show cognitive, behavioural and social differences compared to their peers. However, the age and sequence at which these differences begin to emerge is not fully understood. This prospective cohort study examines the cognitive, behavioural, ADHD trait and autism symptom development in infant and pre-school children with NF1 compared with typically developing (TD) children without a family history of neurodevelopmental conditions. METHODS: Data from standardised tests was gathered at 5, 10, 14, 24 and 36 months of age (NF1 n = 35, TD n = 29). Developmental trajectories of cognitive (Mullen Scales of Early Learning, MSEL) and adaptive behavioural (Vineland Adaptive Behavior Scales, VABS) development from 5 to 36 months were analysed using linear mixed modelling. Measures of ADHD (Child Behavior Checklist) and autism traits (ADOS-2, BOSA-MV and ADI-R) were assessed at 24 and 36 months. RESULTS: The developmental trajectory of cognitive skills (all domains of the MSEL) and behavioural skills (four domains of the VABS) differed significantly between NF1 and TD groups. Post-hoc tests demonstrated that the NF1 participants scored significantly lower than TD participants at 24 months on all MSEL and VABS domains. The NF1 cohort demonstrated higher mean autism and ADHD traits at 24 months and 14% of the NF1 cohort met a research diagnostic classification for autism at 36 months. LIMITATIONS: The study has a relatively small sample size due to variable retention and rolling recruitment. Due to limitations imposed by the COVID-19 pandemic, we utilised the Brief Observation of Symptoms of Autism for Minimally Verbal children (BOSA-MV) for some participants, which was administered online and may not gather as accurate a picture of traits as ADOS-2. The BOSA-MV was utilised for 41% of participants with NF1 at 36 months compared to 11% at 24 months. This may explain the reduction in the percentage of children with NF1 that met autism criteria at 36 months. CONCLUSIONS: By 24 months of age, the NF1 cohort show lower cognitive skills and adaptive behaviour and higher levels of autism and ADHD traits as compared to TD children. This has implications for developmental monitoring and referral for early interventions. TRIAL REGISTRATION: Not applicable. En ligne : https://dx.doi.org/10.1186/s13229-024-00621-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=538

The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism / Kathy LEADBITTER ; Louisa HARRISON ; Sophie LANGHORNE ; Ceri ELLIS ; Richard Smallman ; Amelia PEARSON ; Latha HACKETT ; Leo KROLL ; Alison Dunkerley ; Hilary Beach ; June Gilbert ; Amy van Gils ; Tessa Hutton ; Jonathan GREEN ; Penny BEE in Autism, 29-2 (February 2025)  

Public ISBD [article]  inAutism > 29-2 (February 2025) . - p.367-381 Titre : The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism : Autism Type de document : Texte imprimé et/ou numérique Auteurs : Kathy LEADBITTER, Auteur ; Louisa HARRISON, Auteur ; Sophie LANGHORNE, Auteur ; Ceri ELLIS, Auteur ; Richard Smallman, Auteur ; Amelia PEARSON, Auteur ; Latha HACKETT, Auteur ; Leo KROLL, Auteur ; Alison Dunkerley, Auteur ; Hilary Beach, Auteur ; June Gilbert, Auteur ; Amy van Gils, Auteur ; Tessa Hutton, Auteur ; Jonathan GREEN, Auteur ; Penny BEE, Auteur Article en page(s) : p.367-381 Langues : Anglais (eng) Mots-clés : autism  diagnosis  caregivers  support  acceptance  commitment therapy Index. décimale : PER Périodiques Résumé : Caregivers can experience significant challenges following their child?s autism diagnosis and often seek informational, relational and emotional support. Post-diagnostic support for caregivers has received relatively little research attention and represents a significant gap in the international evidence base. We used an iterative codesign process to develop a manualised group-based post-diagnostic programme, Empower-Autism, with associated theory of change, to address the diverse needs of caregivers and improve caregiver mental health. Empower-Autism blended evidence-informed autism psychoeducation with psychotherapeutic components grounded in Acceptance and Commitment Therapy. Three feasibility groups (two in-person and one online) were delivered with 29 clinically referred, socioeconomically diverse caregivers. We evaluated feasibility and acceptability through quantitative attendance and satisfaction data, and thematic analysis of detailed interviews with 17 participants and 5 facilitators. Attendance was satisfactory (76% participants meeting prespecified criteria) and programme satisfaction was good. Qualitative analysis suggested the programme was acceptable and accessible, and highlighted the areas for improvement. Caregivers described perceived benefits from the programme, including improved wellbeing, social connection, autism positivity and more attuned parenting. Empower-Autism is being evaluated within a large randomised controlled trial and, if shown to be clinically and cost-effective, this programme will fill an identified evidence gap in the United Kingdom and global provision. Lay Abstract What is already known about the topic? Parents and carers face many challenges following their child?s autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing. What does this article add? This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child?s autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way. Implications for practice, research or policy The new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice. En ligne : https://dx.doi.org/10.1177/13623613241274566 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547 [article] The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism : Autism [Texte imprimé et/ou numérique] / Kathy LEADBITTER, Auteur ; Louisa HARRISON, Auteur ; Sophie LANGHORNE, Auteur ; Ceri ELLIS, Auteur ; Richard Smallman, Auteur ; Amelia PEARSON, Auteur ; Latha HACKETT, Auteur ; Leo KROLL, Auteur ; Alison Dunkerley, Auteur ; Hilary Beach, Auteur ; June Gilbert, Auteur ; Amy van Gils, Auteur ; Tessa Hutton, Auteur ; Jonathan GREEN, Auteur ; Penny BEE, Auteur . - p.367-381. Langues : Anglais (eng) in Autism > 29-2 (February 2025) . - p.367-381 Mots-clés : autism  diagnosis  caregivers  support  acceptance  commitment therapy Index. décimale : PER Périodiques Résumé : Caregivers can experience significant challenges following their child?s autism diagnosis and often seek informational, relational and emotional support. Post-diagnostic support for caregivers has received relatively little research attention and represents a significant gap in the international evidence base. We used an iterative codesign process to develop a manualised group-based post-diagnostic programme, Empower-Autism, with associated theory of change, to address the diverse needs of caregivers and improve caregiver mental health. Empower-Autism blended evidence-informed autism psychoeducation with psychotherapeutic components grounded in Acceptance and Commitment Therapy. Three feasibility groups (two in-person and one online) were delivered with 29 clinically referred, socioeconomically diverse caregivers. We evaluated feasibility and acceptability through quantitative attendance and satisfaction data, and thematic analysis of detailed interviews with 17 participants and 5 facilitators. Attendance was satisfactory (76% participants meeting prespecified criteria) and programme satisfaction was good. Qualitative analysis suggested the programme was acceptable and accessible, and highlighted the areas for improvement. Caregivers described perceived benefits from the programme, including improved wellbeing, social connection, autism positivity and more attuned parenting. Empower-Autism is being evaluated within a large randomised controlled trial and, if shown to be clinically and cost-effective, this programme will fill an identified evidence gap in the United Kingdom and global provision. Lay Abstract What is already known about the topic? Parents and carers face many challenges following their child?s autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing. What does this article add? This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child?s autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way. Implications for practice, research or policy The new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice. En ligne : https://dx.doi.org/10.1177/13623613241274566 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=547

Using implementation science frameworks to explore barriers and facilitators for parents' use of therapeutic strategies following a parent-mediated autism intervention / Sophie CARRUTHERS in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1011-1025 Titre : Using implementation science frameworks to explore barriers and facilitators for parents' use of therapeutic strategies following a parent-mediated autism intervention Type de document : Texte imprimé et/ou numérique Auteurs : Sophie CARRUTHERS, Auteur ; Natasha MLECZKO, Auteur ; Stephanie PAGE, Auteur ; Shalini AHUJA, Auteur ; Ceri ELLIS, Auteur ; Patricia HOWLIN, Auteur ; Kathy LEADBITTER, Auteur ; Lauren TAYLOR, Auteur ; Vicky SLONIMS, Auteur ; Tony CHARMAN, Auteur Article en page(s) : p.1011-1025 Langues : Anglais (eng) Mots-clés : autism spectrum disorders,interventions - psychosocial/behavioural,qualitative research Index. décimale : PER Périodiques Résumé : One core component of the Paediatric Autism Communication Therapy-Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy-Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents' characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy-Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child?s behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy-Generalised and other parent-mediated early autism interventions.Lay abstractMany early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy-Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2?years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents' characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy-Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy-Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child?s behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions. En ligne : https://doi.org/10.1177/13623613221125630 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Using implementation science frameworks to explore barriers and facilitators for parents' use of therapeutic strategies following a parent-mediated autism intervention [Texte imprimé et/ou numérique] / Sophie CARRUTHERS, Auteur ; Natasha MLECZKO, Auteur ; Stephanie PAGE, Auteur ; Shalini AHUJA, Auteur ; Ceri ELLIS, Auteur ; Patricia HOWLIN, Auteur ; Kathy LEADBITTER, Auteur ; Lauren TAYLOR, Auteur ; Vicky SLONIMS, Auteur ; Tony CHARMAN, Auteur . - p.1011-1025. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1011-1025 Mots-clés : autism spectrum disorders,interventions - psychosocial/behavioural,qualitative research Index. décimale : PER Périodiques Résumé : One core component of the Paediatric Autism Communication Therapy-Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy-Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents' characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy-Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child?s behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy-Generalised and other parent-mediated early autism interventions.Lay abstractMany early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy-Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2?years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents' characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy-Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy-Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child?s behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions. En ligne : https://doi.org/10.1177/13623613221125630 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

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