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 et/ou numérique Auteurs : R. HERREMA, Auteur ; D. GARLAND, Auteur ; M. OSBORNE, Auteur ; M. FREESTON, Auteur ; E. HONEY, Auteur ; J. 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 et/ou numérique] / R. HERREMA, Auteur ; D. GARLAND, Auteur ; M. OSBORNE, Auteur ; M. FREESTON, Auteur ; E. HONEY, Auteur ; J. 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

Enhancing the Validity of a Quality of Life Measure for Autistic People / H. 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 et/ou numérique Auteurs : H. MCCONACHIE, Auteur ; D. MASON, Auteur ; Jeremy R. PARR, Auteur ; D. GARLAND, Auteur ; C. Ellie WILSON, Auteur ; J. 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 et/ou numérique] / H. MCCONACHIE, Auteur ; D. MASON, Auteur ; Jeremy R. PARR, Auteur ; D. GARLAND, Auteur ; C. Ellie WILSON, Auteur ; J. 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)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3589-3599 Titre : Mental Wellbeing of Family Members of Autistic Adults Type de document : Texte imprimé et/ou numérique Auteurs : R. HERREMA, Auteur ; D. GARLAND, Auteur ; M. OSBORNE, Auteur ; M. FREESTON, Auteur ; E. HONEY, Auteur ; J. RODGERS, Auteur Article en page(s) : p.3589-3599 Langues : Anglais (eng) Mots-clés : Adults  Autism  Family members  Mental health  Wellbeing Index. décimale : PER Périodiques Résumé : Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer. En ligne : http://dx.doi.org/10.1007/s10803-017-3269-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325 [article] Mental Wellbeing of Family Members of Autistic Adults [Texte imprimé et/ou numérique] / R. HERREMA, Auteur ; D. GARLAND, Auteur ; M. OSBORNE, Auteur ; M. FREESTON, Auteur ; E. HONEY, Auteur ; J. RODGERS, Auteur . - p.3589-3599. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3589-3599 Mots-clés : Adults  Autism  Family members  Mental health  Wellbeing Index. décimale : PER Périodiques Résumé : Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer. En ligne : http://dx.doi.org/10.1007/s10803-017-3269-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325

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

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-4 (April 2018) . - p.1041-1051 Titre : Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : H. MCCONACHIE, Auteur ; N. LIVINGSTONE, Auteur ; C. MORRIS, Auteur ; Bryony BERESFORD, Auteur ; A. LE COUTEUR, Auteur ; P. GRINGRAS, Auteur ; D. GARLAND, Auteur ; G. JONES, Auteur ; G. MACDONALD, Auteur ; K. WILLIAMS, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.1041-1051 Langues : Anglais (eng) Mots-clés : Consultation  Measurement  Outcomes  Parents  Young children Index. décimale : PER Périodiques Résumé : Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research. En ligne : http://dx.doi.org/10.1007/s10803-017-3282-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=351 [article] Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder [Texte imprimé et/ou numérique] / H. MCCONACHIE, Auteur ; N. LIVINGSTONE, Auteur ; C. MORRIS, Auteur ; Bryony BERESFORD, Auteur ; A. LE COUTEUR, Auteur ; P. GRINGRAS, Auteur ; D. GARLAND, Auteur ; G. JONES, Auteur ; G. MACDONALD, Auteur ; K. WILLIAMS, Auteur ; Jeremy R. PARR, Auteur . - p.1041-1051. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-4 (April 2018) . - p.1041-1051 Mots-clés : Consultation  Measurement  Outcomes  Parents  Young children Index. décimale : PER Périodiques Résumé : Evaluation of interventions for children with autism spectrum disorder (ASD) is hampered by the multitude of outcomes measured and tools used. Measurement in research with young children tends to focus on core impairments in ASD. We conducted a systematic review of qualitative studies of what matters to parents. Parent advisory groups completed structured activities to explore their perceptions of the relative importance of a wide range of outcome constructs. Their highest ranked outcomes impacted directly on everyday life and functioning (anxiety, distress, hypersensitivity, sleep problems, happiness, relationships with brothers and sisters, and parent stress). Collaboration between professionals, researchers and parents/carers is required to determine an agreed core set of outcomes to use across evaluation research. En ligne : http://dx.doi.org/10.1007/s10803-017-3282-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=351

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

Public ISBD [article]  inAutism Research > 11-8 (August 2018) . - p.1138-1147 Titre : Predictors of quality of life for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : D. MASON, Auteur ; H. MCCONACHIE, Auteur ; D. GARLAND, Auteur ; A. PETROU, Auteur ; J. RODGERS, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.1138-1147 Langues : Anglais (eng) Mots-clés : autism  gender  public mental health  quality of life Index. décimale : PER Périodiques Résumé : Research with adults on the autism spectrum is as yet limited in scope and quality. The present study describes quality of life (QoL) of a large sample of autistic adults in the UK and investigates characteristics that may be predictive of QoL. A total of 370 autistic adults from the Adult Autism Spectrum Cohort-UK (ASC-UK) completed the WHOQoL-BREF, and the Social Responsiveness Scale (SRS, autism symptom severity), along with the ASC-UK registration questionnaire giving information on mental health and their life situation. QoL for autistic adults was lower than for the general population for each WHOQoL domain. Younger participants reported higher QoL than older participants in psychological and environment domains. Males reported higher physical QoL than females, and females reported higher social QoL than males. Significant positive predictors of QoL were: being employed (physical QoL), receiving support (social and environment QoL), and being in a relationship (social QoL). Having a mental health condition and higher SRS total score were negative predictors of QoL across all four domains. Autistic adults require access to effective mental health interventions, and informal and formal support for their social difficulties, to improve their quality of life. Autism Res 2018, 11: 1138-1147. (c) 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: There has been limited research into the lived experience of autistic adults. Using the World Health Organization quality of life measure, we found that autistic people (370) in the UK reported their quality of life to be lower than that of the general population. Better quality of life was associated with being in a relationship; those with a mental health condition had poorer quality of life. This research suggests some ways in which autistic people can be helped to improve their quality of life. En ligne : http://dx.doi.org/10.1002/aur.1965 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=369 [article] Predictors of quality of life for autistic adults [Texte imprimé et/ou numérique] / D. MASON, Auteur ; H. MCCONACHIE, Auteur ; D. GARLAND, Auteur ; A. PETROU, Auteur ; J. RODGERS, Auteur ; Jeremy R. PARR, Auteur . - p.1138-1147. Langues : Anglais (eng) in Autism Research > 11-8 (August 2018) . - p.1138-1147 Mots-clés : autism  gender  public mental health  quality of life Index. décimale : PER Périodiques Résumé : Research with adults on the autism spectrum is as yet limited in scope and quality. The present study describes quality of life (QoL) of a large sample of autistic adults in the UK and investigates characteristics that may be predictive of QoL. A total of 370 autistic adults from the Adult Autism Spectrum Cohort-UK (ASC-UK) completed the WHOQoL-BREF, and the Social Responsiveness Scale (SRS, autism symptom severity), along with the ASC-UK registration questionnaire giving information on mental health and their life situation. QoL for autistic adults was lower than for the general population for each WHOQoL domain. Younger participants reported higher QoL than older participants in psychological and environment domains. Males reported higher physical QoL than females, and females reported higher social QoL than males. Significant positive predictors of QoL were: being employed (physical QoL), receiving support (social and environment QoL), and being in a relationship (social QoL). Having a mental health condition and higher SRS total score were negative predictors of QoL across all four domains. Autistic adults require access to effective mental health interventions, and informal and formal support for their social difficulties, to improve their quality of life. Autism Res 2018, 11: 1138-1147. (c) 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY: There has been limited research into the lived experience of autistic adults. Using the World Health Organization quality of life measure, we found that autistic people (370) in the UK reported their quality of life to be lower than that of the general population. Better quality of life was associated with being in a relationship; those with a mental health condition had poorer quality of life. This research suggests some ways in which autistic people can be helped to improve their quality of life. En ligne : http://dx.doi.org/10.1002/aur.1965 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=369

---

1 (1 - 5 / 5)