'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

Reduced prosocial motivation and effort in adolescents with conduct problems and callous-unemotional traits / Peter MARTIN ; Patricia L. LOCKWOOD ; Jo CUTLER ; Matthew APPS ; Ruth ROBERTS ; Harriet PHILLIPS ; Katie BROWN ; Eamon J. MCCRORY ; Essi VIDING in Journal of Child Psychology and Psychiatry, 65-8 (August 2024)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 65-8 (August 2024) . - p.1061-1071 Titre : Reduced prosocial motivation and effort in adolescents with conduct problems and callous-unemotional traits Type de document : texte imprimé Auteurs : Peter MARTIN, Auteur ; Patricia L. LOCKWOOD, Auteur ; Jo CUTLER, Auteur ; Matthew APPS, Auteur ; Ruth ROBERTS, Auteur ; Harriet PHILLIPS, Auteur ; Katie BROWN, Auteur ; Eamon J. MCCRORY, Auteur ; Essi VIDING, Auteur Article en page(s) : p.1061-1071 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Background Prosocial behaviours - acts that benefit others - are of crucial importance for many species including humans. However, adolescents with conduct problems (CP), unlike their typically developing (TD) peers, demonstrate markedly reduced engagement in prosocial behaviours. This pattern is particularly pronounced in adolescents with CP and high levels of callous-unemotional traits (CP/HCU) who are at increased risk of developing psychopathy in adulthood. While a substantial amount of research has investigated the cognitive-affective mechanisms thought to underlie antisocial behaviour, much less is known about the mechanisms that could explain reduced prosocial behaviours in adolescents with CP. Methods Here we examined the willingness to exert effort to benefit oneself (self) and another person (other, prosocial condition) in children with CP/HCU, CP and lower levels of CU traits (CP/LCU) and their TD peers. The task captured both prosocial choices, and actual effort exerted following prosocial choices, in adolescent boys aged 11-16 (27 CP/HCU; 34 CP/LCU; 33 TD). We used computational modelling to reveal the mechanistic processes involved when choosing prosocial acts. Results We found that both CP/HCU and CP/LCU groups were more averse to initiating effortful prosocial acts than TD adolescents - both at a cognitive and at a behavioural level. Strikingly, even if they chose to initiate a prosocial act, the CP/HCU group exerted less effort following this prosocial choice than other groups. Conclusions Our findings indicate that reduced exertion of effort to benefit others may be an important factor that differentiates adolescents with CP/HCU from their peers with CP/LCU. They offer new insights into what might drive low prosocial behaviour in adolescents with CP, including vulnerabilities that may particularly characterise those with high levels of CU traits. En ligne : https://doi.org/10.1111/jcpp.13945 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532 [article] Reduced prosocial motivation and effort in adolescents with conduct problems and callous-unemotional traits [texte imprimé] / Peter MARTIN, Auteur ; Patricia L. LOCKWOOD, Auteur ; Jo CUTLER, Auteur ; Matthew APPS, Auteur ; Ruth ROBERTS, Auteur ; Harriet PHILLIPS, Auteur ; Katie BROWN, Auteur ; Eamon J. MCCRORY, Auteur ; Essi VIDING, Auteur . - p.1061-1071. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 65-8 (August 2024) . - p.1061-1071 Index. décimale : PER Périodiques Résumé : Background Prosocial behaviours - acts that benefit others - are of crucial importance for many species including humans. However, adolescents with conduct problems (CP), unlike their typically developing (TD) peers, demonstrate markedly reduced engagement in prosocial behaviours. This pattern is particularly pronounced in adolescents with CP and high levels of callous-unemotional traits (CP/HCU) who are at increased risk of developing psychopathy in adulthood. While a substantial amount of research has investigated the cognitive-affective mechanisms thought to underlie antisocial behaviour, much less is known about the mechanisms that could explain reduced prosocial behaviours in adolescents with CP. Methods Here we examined the willingness to exert effort to benefit oneself (self) and another person (other, prosocial condition) in children with CP/HCU, CP and lower levels of CU traits (CP/LCU) and their TD peers. The task captured both prosocial choices, and actual effort exerted following prosocial choices, in adolescent boys aged 11-16 (27 CP/HCU; 34 CP/LCU; 33 TD). We used computational modelling to reveal the mechanistic processes involved when choosing prosocial acts. Results We found that both CP/HCU and CP/LCU groups were more averse to initiating effortful prosocial acts than TD adolescents - both at a cognitive and at a behavioural level. Strikingly, even if they chose to initiate a prosocial act, the CP/HCU group exerted less effort following this prosocial choice than other groups. Conclusions Our findings indicate that reduced exertion of effort to benefit others may be an important factor that differentiates adolescents with CP/HCU from their peers with CP/LCU. They offer new insights into what might drive low prosocial behaviour in adolescents with CP, including vulnerabilities that may particularly characterise those with high levels of CU traits. En ligne : https://doi.org/10.1111/jcpp.13945 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=532

Trajectories of cognitive development during adolescence among youth at-risk for schizophrenia / Hannah DICKSON in Journal of Child Psychology and Psychiatry, 59-11 (November 2018)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 59-11 (November 2018) . - p.1215-1224 Titre : Trajectories of cognitive development during adolescence among youth at-risk for schizophrenia Type de document : texte imprimé Auteurs : Hannah DICKSON, Auteur ; Alexis E. CULLEN, Auteur ; Rebecca JONES, Auteur ; Abraham REICHENBERG, Auteur ; Ruth ROBERTS, Auteur ; Sheilagh HODGINS, Auteur ; Robin G. MORRIS, Auteur ; Kristin R. LAURENS, Auteur Article en page(s) : p.1215-1224 Langues : Anglais (eng) Mots-clés : Psychosis  academic performance  executive function  intelligence  memory Index. décimale : PER Périodiques Résumé : BACKGROUND: Among adults with schizophrenia, evidence suggests that premorbid deficits in different cognitive domains follow distinct developmental courses during childhood and adolescence. The aim of this study was to delineate trajectories of adolescent cognitive functions prospectively among different groups of youth at-risk for schizophrenia, relative to their typically developing (TD) peers. METHOD: Using linear mixed models adjusted for sex, ethnicity, parental occupation and practice effects, cognitive development between ages 9 and 16 years was compared for youth characterised by a triad of well-replicated developmental antecedents of schizophrenia (ASz; N = 32) and youth with a least one affected relative with schizophrenia or schizoaffective disorder (FHx; N = 29), relative to TD youth (N = 45). Participants completed measures of IQ, scholastic achievement, memory and executive function at three time-points, separated by approximately 24-month intervals. RESULTS: Compared to TD youth, both ASz and FHx youth displayed stable developmental deficits in verbal working memory and inhibition/switching executive functions. ASz youth additionally presented with stable deficits in measures of vocabulary (IQ), word reading, numerical operations, and category fluency executive function, and a slower rate of growth (developmental lag) on spelling from 9 to 16 years than TD peers. Conversely, faster rates of growth relative to TD peers (developmental delay) were observed on visual and verbal memory, and on category fluency executive function (ASz youth only) and on matrix reasoning (IQ) and word reading (FHx youth only). CONCLUSIONS: These differential patterns of deviation from normative adolescent cognitive development among at-risk youth imply potential for cognitive rehabilitation targeting of specific cognitive deficits at different developmental phases. En ligne : http://dx.doi.org/10.1111/jcpp.12912 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370 [article] Trajectories of cognitive development during adolescence among youth at-risk for schizophrenia [texte imprimé] / Hannah DICKSON, Auteur ; Alexis E. CULLEN, Auteur ; Rebecca JONES, Auteur ; Abraham REICHENBERG, Auteur ; Ruth ROBERTS, Auteur ; Sheilagh HODGINS, Auteur ; Robin G. MORRIS, Auteur ; Kristin R. LAURENS, Auteur . - p.1215-1224. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 59-11 (November 2018) . - p.1215-1224 Mots-clés : Psychosis  academic performance  executive function  intelligence  memory Index. décimale : PER Périodiques Résumé : BACKGROUND: Among adults with schizophrenia, evidence suggests that premorbid deficits in different cognitive domains follow distinct developmental courses during childhood and adolescence. The aim of this study was to delineate trajectories of adolescent cognitive functions prospectively among different groups of youth at-risk for schizophrenia, relative to their typically developing (TD) peers. METHOD: Using linear mixed models adjusted for sex, ethnicity, parental occupation and practice effects, cognitive development between ages 9 and 16 years was compared for youth characterised by a triad of well-replicated developmental antecedents of schizophrenia (ASz; N = 32) and youth with a least one affected relative with schizophrenia or schizoaffective disorder (FHx; N = 29), relative to TD youth (N = 45). Participants completed measures of IQ, scholastic achievement, memory and executive function at three time-points, separated by approximately 24-month intervals. RESULTS: Compared to TD youth, both ASz and FHx youth displayed stable developmental deficits in verbal working memory and inhibition/switching executive functions. ASz youth additionally presented with stable deficits in measures of vocabulary (IQ), word reading, numerical operations, and category fluency executive function, and a slower rate of growth (developmental lag) on spelling from 9 to 16 years than TD peers. Conversely, faster rates of growth relative to TD peers (developmental delay) were observed on visual and verbal memory, and on category fluency executive function (ASz youth only) and on matrix reasoning (IQ) and word reading (FHx youth only). CONCLUSIONS: These differential patterns of deviation from normative adolescent cognitive development among at-risk youth imply potential for cognitive rehabilitation targeting of specific cognitive deficits at different developmental phases. En ligne : http://dx.doi.org/10.1111/jcpp.12912 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370

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