Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults / R. HERREMA in Journal of Autism and Developmental Disorders, 47-11 (November 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3659-3668 Titre : Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults Type de document : texte imprimé Auteurs : R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.3659-3668 Langues : Anglais (eng) Mots-clés : Adults  Autism  Family members  Future  Support  Worry Index. décimale : PER Périodiques Résumé : Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future. En ligne : http://dx.doi.org/10.1007/s10803-017-3254-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325 [article] Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults [texte imprimé] / R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur . - p.3659-3668. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3659-3668 Mots-clés : Adults  Autism  Family members  Future  Support  Worry Index. décimale : PER Périodiques Résumé : Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future. En ligne : http://dx.doi.org/10.1007/s10803-017-3254-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325

Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families / Jane GOODWIN in Autism, 26-4 (May 2022)  

Public ISBD [article]  inAutism > 26-4 (May 2022) . - p.827-838 Titre : Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families Type de document : texte imprimé Auteurs : Jane GOODWIN, Auteur ; Priyanka ROB, Auteur ; Mark FREESTON, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Catharine WRIGHT, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.827-838 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Caregivers  Child  Humans  Parents  Quality of Life  Uncertainty  anxiety  intolerance of uncertainty  potential conflicts of interest with respect to the research, authorship and/or  publication of this article: Professor J.R., Dr C.W. and Professor M.F. developed  the Coping with Uncertainty in Everyday Situations (CUES(©)) Programme. Data  presented in this article were collected as part of a CUES(©) feasibility and  acceptability study. Professor M.F. declares receiving royalties for books and  honoraria for training in related areas addressing anxiety in neurotypical  populations. Index. décimale : PER Périodiques Résumé : Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child's reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children's ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613211033757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families [texte imprimé] / Jane GOODWIN, Auteur ; Priyanka ROB, Auteur ; Mark FREESTON, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Catharine WRIGHT, Auteur ; Jacqui RODGERS, Auteur . - p.827-838. Langues : Anglais (eng) in Autism > 26-4 (May 2022) . - p.827-838 Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Caregivers  Child  Humans  Parents  Quality of Life  Uncertainty  anxiety  intolerance of uncertainty  potential conflicts of interest with respect to the research, authorship and/or  publication of this article: Professor J.R., Dr C.W. and Professor M.F. developed  the Coping with Uncertainty in Everyday Situations (CUES(©)) Programme. Data  presented in this article were collected as part of a CUES(©) feasibility and  acceptability study. Professor M.F. declares receiving royalties for books and  honoraria for training in related areas addressing anxiety in neurotypical  populations. Index. décimale : PER Périodiques Résumé : Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child's reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children's ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613211033757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

Co-design of an NHS primary care health check for autistic adults / Helen TAYLOR in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1079-1091 Titre : Co-design of an NHS primary care health check for autistic adults Type de document : texte imprimé Auteurs : Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora M. RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.1079-1091 Langues : Anglais (eng) Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Co-design of an NHS primary care health check for autistic adults [texte imprimé] / Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora M. RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R. PARR, Auteur . - p.1079-1091. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1079-1091 Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial / Jacqui RODGERS in Journal of Autism and Developmental Disorders, 53-9 (September 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-9 (September 2023) . - p.3460-3474 Titre : Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial Type de document : texte imprimé Auteurs : Jacqui RODGERS, Auteur ; Jane GOODWIN, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Lucy ISARD, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Priyanka ROB, Auteur ; Catharine WRIGHT, Auteur ; Mark FREESTON, Auteur Article en page(s) : p.3460-3474 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Anxiety related to uncertainty is common in autism. Coping with Uncertainty in Everyday Situations (CUES©) is a parent-mediated group intervention aiming to increase autistic children s tolerance to uncertain situations. A pilot study was conducted to test its feasibility and acceptability. En ligne : https://doi.org/10.1007/s10803-022-05645-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511 [article] Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial [texte imprimé] / Jacqui RODGERS, Auteur ; Jane GOODWIN, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Lucy ISARD, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Priyanka ROB, Auteur ; Catharine WRIGHT, Auteur ; Mark FREESTON, Auteur . - p.3460-3474. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-9 (September 2023) . - p.3460-3474 Index. décimale : PER Périodiques Résumé : Anxiety related to uncertainty is common in autism. Coping with Uncertainty in Everyday Situations (CUES©) is a parent-mediated group intervention aiming to increase autistic children s tolerance to uncertain situations. A pilot study was conducted to test its feasibility and acceptability. En ligne : https://doi.org/10.1007/s10803-022-05645-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511

Enhancing the Validity of a Quality of Life Measure for Autistic People / Helen MCCONACHIE in Journal of Autism and Developmental Disorders, 48-5 (May 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1596-1611 Titre : Enhancing the Validity of a Quality of Life Measure for Autistic People Type de document : texte imprimé Auteurs : Helen MCCONACHIE, Auteur ; David MASON, Auteur ; Jeremy R. PARR, Auteur ; Deborah GARLAND, Auteur ; C. Ellie WILSON, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.1596-1611 Langues : Anglais (eng) Mots-clés : Autism  Measurement properties  Public mental health  Quality of life Index. décimale : PER Périodiques Résumé : Accurate measurement of quality of life (QoL) is important for evaluation of autism services and trials of interventions. We undertook psychometric validation of the World Health Organisation measure-WHOQoL-BREF, examined construct validity of the WHO Disabilities module and developed nine additional autism-specific items (ASQoL) from extensive consultation with the autism community. The sample of 309 autistic people was recruited from the Adult Autism Spectrum Cohort-UK. The WHOQoL-BREF had good psychometric properties, including criterion, convergent, divergent and discriminant validity. The WHO Disabilities module showed adequate construct validity and reliability. The ASQoL items form a unitary factor of QoL, with one global item. Future studies can use the WHO measures alongside the ASQoL items to measure QoL of autistic people. En ligne : http://dx.doi.org/10.1007/s10803-017-3402-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355 [article] Enhancing the Validity of a Quality of Life Measure for Autistic People [texte imprimé] / Helen MCCONACHIE, Auteur ; David MASON, Auteur ; Jeremy R. PARR, Auteur ; Deborah GARLAND, Auteur ; C. Ellie WILSON, Auteur ; Jacqui RODGERS, Auteur . - p.1596-1611. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1596-1611 Mots-clés : Autism  Measurement properties  Public mental health  Quality of life Index. décimale : PER Périodiques Résumé : Accurate measurement of quality of life (QoL) is important for evaluation of autism services and trials of interventions. We undertook psychometric validation of the World Health Organisation measure-WHOQoL-BREF, examined construct validity of the WHO Disabilities module and developed nine additional autism-specific items (ASQoL) from extensive consultation with the autism community. The sample of 309 autistic people was recruited from the Adult Autism Spectrum Cohort-UK. The WHOQoL-BREF had good psychometric properties, including criterion, convergent, divergent and discriminant validity. The WHO Disabilities module showed adequate construct validity and reliability. The ASQoL items form a unitary factor of QoL, with one global item. Future studies can use the WHO measures alongside the ASQoL items to measure QoL of autistic people. En ligne : http://dx.doi.org/10.1007/s10803-017-3402-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355

Mental Wellbeing of Family Members of Autistic Adults / R. HERREMA in Journal of Autism and Developmental Disorders, 47-11 (November 2017)  

Permalink

Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder / Helen MCCONACHIE in Journal of Autism and Developmental Disorders, 48-4 (April 2018)  

Permalink

Predictors of quality of life for autistic adults / David MASON in Autism Research, 11-8 (August 2018)  

Permalink

Understanding Repetitive Behaviours: A clinical and cost-effectiveness, multi-site randomised controlled trial of a group for parents and carers of young autistic children / Victoria GRAHAME in Autism, 29-8 (August 2025)  

Permalink

---

1 (1 - 9 / 9) Par page : 25 50 100 200