Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management / Joanne TARVER in Autism, 25-2 (February 2021)  

Public ISBD [article]  inAutism > 25-2 (February 2021) . - p.429-439 Titre : Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management Type de document : texte imprimé Auteurs : Joanne TARVER, Auteur ; Effie PEARSON, Auteur ; Georgina EDWARDS, Auteur ; Aryana SHIRAZI, Auteur ; Liana POTTER, Auteur ; Priya MALHI, Auteur ; Jane WAITE, Auteur Article en page(s) : p.429-439 Langues : Anglais (eng) Mots-clés : anxiety  autism spectrum disorders  qualitative research Index. décimale : PER Périodiques Résumé : Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words. En ligne : http://dx.doi.org/10.1177/1362361320962366 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=442 [article] Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management [texte imprimé] / Joanne TARVER, Auteur ; Effie PEARSON, Auteur ; Georgina EDWARDS, Auteur ; Aryana SHIRAZI, Auteur ; Liana POTTER, Auteur ; Priya MALHI, Auteur ; Jane WAITE, Auteur . - p.429-439. Langues : Anglais (eng) in Autism > 25-2 (February 2021) . - p.429-439 Mots-clés : anxiety  autism spectrum disorders  qualitative research Index. décimale : PER Périodiques Résumé : Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words. En ligne : http://dx.doi.org/10.1177/1362361320962366 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=442

Development and psychometric properties of the Clinical Anxiety Scale for People with Intellectual Disabilities (ClASP-ID) / Jessica Eliza MINGINS in Journal of Neurodevelopmental Disorders, 16 (2024)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 16 (2024) Titre : Development and psychometric properties of the Clinical Anxiety Scale for People with Intellectual Disabilities (ClASP-ID) Type de document : texte imprimé Auteurs : Jessica Eliza MINGINS, Auteur ; Joanne TARVER, Auteur ; Effie PEARSON, Auteur ; Georgina EDWARDS, Auteur ; Megan BIRD, Auteur ; Hayley CRAWFORD, Auteur ; Chris OLIVER, Auteur ; Lauren SHELLEY, Auteur ; Jane WAITE, Auteur Langues : Anglais (eng) Mots-clés : Humans  Psychometrics  Intellectual Disability/complications  Male  Female  Adult  Anxiety/diagnosis  Adolescent  Young Adult  Child  Reproducibility of Results  Middle Aged  Child, Preschool  Psychiatric Status Rating Scales/standards  Surveys and Questionnaires  Autistic Disorder/complications/diagnosis/psychology  Anxiety  Assessment  Autism  Intellectual disability  Measure development  Mental Health  Pain  Questionnaire Index. décimale : PER Périodiques Résumé : BACKGROUND: There is a critical need for the development of dependable and valid anxiety assessment tools suitable for people with moderate to severe intellectual disabilities, particularly those who speak few or no words. Distinguishing anxiety from distress caused by physical discomfort (pain) or characteristics associated with autism, prevalent in this population, necessitates specialised assessment tools. This study (a) developed a parent-report anxiety questionnaire tailored for individuals with severe to moderate intellectual disabilities, potentially with a co-diagnosis of autism, and (b) evaluated the psychometric attributes of this novel measure. METHODS: A comprehensive approach involving literature reviews, inspection of existing tools, and interviews with clinicians and parents guided the creation of the Clinical Anxiety Scale for People with Intellectual Disabilities. The tool was completed by parents or caregivers (N = 311) reporting on individuals aged 4 or older with intellectual disabilities. RESULTS: Exploratory factor analysis indicated a four-factor structure encompassing anxiety, pain, low energy/withdrawal, and consolability. The anxiety factor explained the most variance in scores (26.3%). The anxiety, pain, low energy/withdrawal subscales demonstrated robust internal consistency (α = 0.81-0.92), and convergent, divergent, and discriminant validity. Robustness of these subscales was further evidenced by test-retest reliability (ICC = 0.79-0.88) and inter-rater reliability (ICC = 0.64-0.71). Subgroup analyses consistently demonstrated strong psychometric properties among individuals diagnosed with non-syndromic autism (N = 98), children (N = 135), adults (N = 175), and across diverse communication abilities within the sample. Moreover, individuals diagnosed with both autism and anxiety exhibited significantly higher scores on the anxiety subscale compared to those without an anxiety diagnosis, while showing no difference in autism characteristic scores. CONCLUSIONS: The findings indicate that the Clinical Anxiety Scale for People with Intellectual Disabilities is a promising measure for use across diverse diagnostic groups, varying communication abilities, and with people with moderate to severe intellectual disabilities. En ligne : https://dx.doi.org/10.1186/s11689-024-09554-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575 [article] Development and psychometric properties of the Clinical Anxiety Scale for People with Intellectual Disabilities (ClASP-ID) [texte imprimé] / Jessica Eliza MINGINS, Auteur ; Joanne TARVER, Auteur ; Effie PEARSON, Auteur ; Georgina EDWARDS, Auteur ; Megan BIRD, Auteur ; Hayley CRAWFORD, Auteur ; Chris OLIVER, Auteur ; Lauren SHELLEY, Auteur ; Jane WAITE, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 16 (2024) Mots-clés : Humans  Psychometrics  Intellectual Disability/complications  Male  Female  Adult  Anxiety/diagnosis  Adolescent  Young Adult  Child  Reproducibility of Results  Middle Aged  Child, Preschool  Psychiatric Status Rating Scales/standards  Surveys and Questionnaires  Autistic Disorder/complications/diagnosis/psychology  Anxiety  Assessment  Autism  Intellectual disability  Measure development  Mental Health  Pain  Questionnaire Index. décimale : PER Périodiques Résumé : BACKGROUND: There is a critical need for the development of dependable and valid anxiety assessment tools suitable for people with moderate to severe intellectual disabilities, particularly those who speak few or no words. Distinguishing anxiety from distress caused by physical discomfort (pain) or characteristics associated with autism, prevalent in this population, necessitates specialised assessment tools. This study (a) developed a parent-report anxiety questionnaire tailored for individuals with severe to moderate intellectual disabilities, potentially with a co-diagnosis of autism, and (b) evaluated the psychometric attributes of this novel measure. METHODS: A comprehensive approach involving literature reviews, inspection of existing tools, and interviews with clinicians and parents guided the creation of the Clinical Anxiety Scale for People with Intellectual Disabilities. The tool was completed by parents or caregivers (N = 311) reporting on individuals aged 4 or older with intellectual disabilities. RESULTS: Exploratory factor analysis indicated a four-factor structure encompassing anxiety, pain, low energy/withdrawal, and consolability. The anxiety factor explained the most variance in scores (26.3%). The anxiety, pain, low energy/withdrawal subscales demonstrated robust internal consistency (α = 0.81-0.92), and convergent, divergent, and discriminant validity. Robustness of these subscales was further evidenced by test-retest reliability (ICC = 0.79-0.88) and inter-rater reliability (ICC = 0.64-0.71). Subgroup analyses consistently demonstrated strong psychometric properties among individuals diagnosed with non-syndromic autism (N = 98), children (N = 135), adults (N = 175), and across diverse communication abilities within the sample. Moreover, individuals diagnosed with both autism and anxiety exhibited significantly higher scores on the anxiety subscale compared to those without an anxiety diagnosis, while showing no difference in autism characteristic scores. CONCLUSIONS: The findings indicate that the Clinical Anxiety Scale for People with Intellectual Disabilities is a promising measure for use across diverse diagnostic groups, varying communication abilities, and with people with moderate to severe intellectual disabilities. En ligne : https://dx.doi.org/10.1186/s11689-024-09554-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575

'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability / Jessica HUGHES in Autism, 28-5 (May 2024)  

Public ISBD [article]  inAutism > 28-5 (May 2024) . - p.1231-1244 Titre : 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability Type de document : texte imprimé Auteurs : Jessica HUGHES, Auteur ; Ruth ROBERTS, Auteur ; Joanne TARVER, Auteur ; Cheryl WARTERS-LOUTH, Auteur ; Betty ZHANG, Auteur ; Emma SOUTHWARD, Auteur ; Rachel SHAW, Auteur ; Georgina EDWARDS, Auteur ; Jane WAITE, Auteur ; Effie PEARSON, Auteur Année de publication : 2024 Article en page(s) : p.1231-1244 Langues : Anglais (eng) Mots-clés : access to services  anxiety  autism  challenging behaviour  intellectual disability  intervention Index. décimale : PER Périodiques Résumé : Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers' experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population. Lay Abstract Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families. En ligne : https://dx.doi.org/10.1177/13623613231196084 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527 [article] 'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability [texte imprimé] / Jessica HUGHES, Auteur ; Ruth ROBERTS, Auteur ; Joanne TARVER, Auteur ; Cheryl WARTERS-LOUTH, Auteur ; Betty ZHANG, Auteur ; Emma SOUTHWARD, Auteur ; Rachel SHAW, Auteur ; Georgina EDWARDS, Auteur ; Jane WAITE, Auteur ; Effie PEARSON, Auteur . - 2024 . - p.1231-1244. Langues : Anglais (eng) in Autism > 28-5 (May 2024) . - p.1231-1244 Mots-clés : access to services  anxiety  autism  challenging behaviour  intellectual disability  intervention Index. décimale : PER Périodiques Résumé : Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers' experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population. Lay Abstract Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families. En ligne : https://dx.doi.org/10.1177/13623613231196084 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=527

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