10 recherche sur le mot-clé 'Caregivers/psychology'

Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers / Connor M. KERNS in Autism, 26-8 (November 2022)  

Public ISBD [article]  inAutism > 26-8 (November 2022) . - p.1987-1998 Titre : Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers Type de document : texte imprimé Auteurs : Connor M. KERNS, Auteur ; Stephen LANKENAU, Auteur ; Paul T. SHATTUCK, Auteur ; Diana L. ROBINS, Auteur ; Craig J. NEWSCHAFFER, Auteur ; Steven J. BERKOWITZ, Auteur Article en page(s) : p.1987-1998 Langues : Anglais (eng) Mots-clés : Adult  Child  Humans  Autistic Disorder/psychology  Caregivers/psychology  Adverse Childhood Experiences  Autism Spectrum Disorder/psychology  Qualitative Research  autism  childhood  qualitative  traumatic events Index. décimale : PER Périodiques Résumé : The stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group. En ligne : http://dx.doi.org/10.1177/13623613211070637 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488 [article] Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers [texte imprimé] / Connor M. KERNS, Auteur ; Stephen LANKENAU, Auteur ; Paul T. SHATTUCK, Auteur ; Diana L. ROBINS, Auteur ; Craig J. NEWSCHAFFER, Auteur ; Steven J. BERKOWITZ, Auteur . - p.1987-1998. Langues : Anglais (eng) in Autism > 26-8 (November 2022) . - p.1987-1998 Mots-clés : Adult  Child  Humans  Autistic Disorder/psychology  Caregivers/psychology  Adverse Childhood Experiences  Autism Spectrum Disorder/psychology  Qualitative Research  autism  childhood  qualitative  traumatic events Index. décimale : PER Périodiques Résumé : The stressors autistic individuals encounter and experience as traumatic may vary from those not on the spectrum and typically measured. We conducted in-depth interviews with autistic adults and caregivers of children and adults on the spectrum to identify potential sources of trauma for autistic individuals and evaluate the ability of a standard trauma measure to capture those experiences. Fourteen autistic adults and 15 caregivers with varied backgrounds, clinical profiles, and histories of adversity were interviewed. Participants also completed standard measures of autism, traumatic exposures, and stress. Interviews were analyzed to record both traditional sources of trauma, for comparison with the standard measure, and distinct sources, described as traumatic only in the narratives of participants. Participants described varied experiences as traumatic. Whereas some reflected traditional traumas (e.g. maltreatment) and forms of social marginalization, others reflected conflicts between autistic characteristics and the environment (e.g. sensory trauma). All adults and most caregivers described sources of trauma in interviews not reported on the standard measure. Results have implications for assessing traumatic events in autism and for understanding their contribution to the mental health of this group. En ligne : http://dx.doi.org/10.1177/13623613211070637 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488

Factors Contributing to Psychological Ill-Effects and Resilience of Caregivers of Children with Developmental Disabilities During a Nation-wide Lockdown During the COVID-19 Pandemic / Tammy S.H. LIM in Journal of Autism and Developmental Disorders, 52-7 (July 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3015-3025 Titre : Factors Contributing to Psychological Ill-Effects and Resilience of Caregivers of Children with Developmental Disabilities During a Nation-wide Lockdown During the COVID-19 Pandemic Type de document : texte imprimé Auteurs : Tammy S.H. LIM, Auteur ; Mae Yue TAN, Auteur ; Ramkumar AISHWORIYA, Auteur ; Ying Qi KANG, Auteur ; Magdalena Yvonne KOH, Auteur ; Liang SHEN, Auteur ; Shang Chee CHONG, Auteur Article en page(s) : p.3015-3025 Langues : Anglais (eng) Mots-clés : Anxiety/epidemiology/psychology  Autism Spectrum Disorder  Covid-19  Caregivers/psychology  Child  Communicable Disease Control  Depression/epidemiology/psychology  Developmental Disabilities/epidemiology  Humans  Pandemics  Resilience, Psychological  Stress, Psychological/epidemiology/psychology  Anxiety  Caregivers  Depression  Developmental disability  Resilience Index. décimale : PER Périodiques Résumé : We evaluated factors affecting psychological ill-effects and resilience of caregivers of children with developmental disabilities during the coronavirus pandemic. Depression, Anxiety, and Stress Scales (DASS-21) and Connor-Davidson Resilience Scale 25-item were administered. Logistic regression was used to identify factors associated with psychological ill-effects and resilience. DASS-21 depression, anxiety and stress scores were high; these were associated with difficulties with infection control measures, autism diagnosis, and need for early intervention services. For caregivers of children with ASD, our DASS-21 scores were significantly higher than non-pandemic scores locally and in other Asian sites. Resilience scores correlated inversely with DASS-21 scores. Targeted support to selected at-risk caregivers and improving resilience can help their coping. En ligne : http://dx.doi.org/10.1007/s10803-021-05180-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477 [article] Factors Contributing to Psychological Ill-Effects and Resilience of Caregivers of Children with Developmental Disabilities During a Nation-wide Lockdown During the COVID-19 Pandemic [texte imprimé] / Tammy S.H. LIM, Auteur ; Mae Yue TAN, Auteur ; Ramkumar AISHWORIYA, Auteur ; Ying Qi KANG, Auteur ; Magdalena Yvonne KOH, Auteur ; Liang SHEN, Auteur ; Shang Chee CHONG, Auteur . - p.3015-3025. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3015-3025 Mots-clés : Anxiety/epidemiology/psychology  Autism Spectrum Disorder  Covid-19  Caregivers/psychology  Child  Communicable Disease Control  Depression/epidemiology/psychology  Developmental Disabilities/epidemiology  Humans  Pandemics  Resilience, Psychological  Stress, Psychological/epidemiology/psychology  Anxiety  Caregivers  Depression  Developmental disability  Resilience Index. décimale : PER Périodiques Résumé : We evaluated factors affecting psychological ill-effects and resilience of caregivers of children with developmental disabilities during the coronavirus pandemic. Depression, Anxiety, and Stress Scales (DASS-21) and Connor-Davidson Resilience Scale 25-item were administered. Logistic regression was used to identify factors associated with psychological ill-effects and resilience. DASS-21 depression, anxiety and stress scores were high; these were associated with difficulties with infection control measures, autism diagnosis, and need for early intervention services. For caregivers of children with ASD, our DASS-21 scores were significantly higher than non-pandemic scores locally and in other Asian sites. Resilience scores correlated inversely with DASS-21 scores. Targeted support to selected at-risk caregivers and improving resilience can help their coping. En ligne : http://dx.doi.org/10.1007/s10803-021-05180-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477

Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study / Kelsey A. FRIESEN in Journal of Autism and Developmental Disorders, 52-7 (July 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3027-3037 Titre : Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study Type de document : texte imprimé Auteurs : Kelsey A. FRIESEN, Auteur ; Jonathan A. WEISS, Auteur ; Stephanie J. HOWE, Auteur ; Connor M. KERNS, Auteur ; Carly A. MCMORRIS, Auteur Article en page(s) : p.3027-3037 Langues : Anglais (eng) Mots-clés : Adaptation, Psychological  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Caregivers/psychology  Humans  Mental Health  Pandemics  Autism  Caregiver  Resilience Index. décimale : PER Périodiques Résumé : Many caregivers of autistic people experience mental health issues, and the impact of disruptions due to COVID-19 may present additional challenges for these individuals. This study characterized caregiver stress, anxiety, and resilient coping during COVID-19 and investigated the impact of COVID-19 disruptions, demographic variables, and resilient coping on mental health. The majority of caregivers reported some degree of disruption associated with COVID-19, and more than half reported moderate levels of stress and high anxiety. Resilient coping did not emerge as a moderator between COVID-19 disruptions and caregiver mental health, but instead had a direct effect on outcomes. Future research is needed to understand additional factors impacting the mental health of caregivers of autistic people during the COVID-19 pandemic. En ligne : http://dx.doi.org/10.1007/s10803-021-05177-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477 [article] Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study [texte imprimé] / Kelsey A. FRIESEN, Auteur ; Jonathan A. WEISS, Auteur ; Stephanie J. HOWE, Auteur ; Connor M. KERNS, Auteur ; Carly A. MCMORRIS, Auteur . - p.3027-3037. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-7 (July 2022) . - p.3027-3037 Mots-clés : Adaptation, Psychological  Autism Spectrum Disorder  Autistic Disorder  Covid-19  Caregivers/psychology  Humans  Mental Health  Pandemics  Autism  Caregiver  Resilience Index. décimale : PER Périodiques Résumé : Many caregivers of autistic people experience mental health issues, and the impact of disruptions due to COVID-19 may present additional challenges for these individuals. This study characterized caregiver stress, anxiety, and resilient coping during COVID-19 and investigated the impact of COVID-19 disruptions, demographic variables, and resilient coping on mental health. The majority of caregivers reported some degree of disruption associated with COVID-19, and more than half reported moderate levels of stress and high anxiety. Resilient coping did not emerge as a moderator between COVID-19 disruptions and caregiver mental health, but instead had a direct effect on outcomes. Future research is needed to understand additional factors impacting the mental health of caregivers of autistic people during the COVID-19 pandemic. En ligne : http://dx.doi.org/10.1007/s10803-021-05177-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=477

Predictors of Satisfaction with Autism Treatment Services During COVID-19 / Emily F. FERGUSON in Journal of Autism and Developmental Disorders, 52-8 (August 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-8 (August 2022) . - p.3686-3697 Titre : Predictors of Satisfaction with Autism Treatment Services During COVID-19 Type de document : texte imprimé Auteurs : Emily F. FERGUSON, Auteur ; Maria JIMENEZ-MUÑOZ, Auteur ; Harrison FEERST, Auteur ; Ty W. VERNON, Auteur Article en page(s) : p.3686-3697 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  covid-19  Caregivers/psychology  Child  Humans  Pandemics  Personal Satisfaction  Autism spectrum disorder  Covid-19  Caregivers  Emotion regulation  Service satisfaction  Telehealth Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has created unprecedented challenges and disruptions for autistic individuals receiving specialized treatment services. This caregiver-report survey study (n=339) explored predictors of satisfaction with autism services during COVID-19 to improve perceived support for these families. Specifically, we investigated whether service delivery medium (telehealth vs. in person), child's emotional functioning, and caregiver stress would predict satisfaction with the most highly utilized services. Satisfaction ratings for ABA/behavioral, speech/language, and occupational therapy were lower when delivered via telehealth as compared to in person. Caregivers who reported higher emotional dysregulation in their children were less satisfied with behavioral therapy services. These results provide a critical caregiver-informed perspective on factors influencing satisfaction with specialized autism services during COVID-19. En ligne : http://dx.doi.org/10.1007/s10803-021-05232-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485 [article] Predictors of Satisfaction with Autism Treatment Services During COVID-19 [texte imprimé] / Emily F. FERGUSON, Auteur ; Maria JIMENEZ-MUÑOZ, Auteur ; Harrison FEERST, Auteur ; Ty W. VERNON, Auteur . - p.3686-3697. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-8 (August 2022) . - p.3686-3697 Mots-clés : Autism Spectrum Disorder/therapy  Autistic Disorder/therapy  covid-19  Caregivers/psychology  Child  Humans  Pandemics  Personal Satisfaction  Autism spectrum disorder  Covid-19  Caregivers  Emotion regulation  Service satisfaction  Telehealth Index. décimale : PER Périodiques Résumé : The COVID-19 pandemic has created unprecedented challenges and disruptions for autistic individuals receiving specialized treatment services. This caregiver-report survey study (n=339) explored predictors of satisfaction with autism services during COVID-19 to improve perceived support for these families. Specifically, we investigated whether service delivery medium (telehealth vs. in person), child's emotional functioning, and caregiver stress would predict satisfaction with the most highly utilized services. Satisfaction ratings for ABA/behavioral, speech/language, and occupational therapy were lower when delivered via telehealth as compared to in person. Caregivers who reported higher emotional dysregulation in their children were less satisfied with behavioral therapy services. These results provide a critical caregiver-informed perspective on factors influencing satisfaction with specialized autism services during COVID-19. En ligne : http://dx.doi.org/10.1007/s10803-021-05232-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485

Preliminary perspectives on gene therapy in fragile X syndrome: a caregiver view / Sarah E.A. ELEY in Journal of Neurodevelopmental Disorders, 17 (2025)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 17 (2025) Titre : Preliminary perspectives on gene therapy in fragile X syndrome: a caregiver view Type de document : texte imprimé Auteurs : Sarah E.A. ELEY, Auteur ; Sydni WEISSGOLD, Auteur ; Andrew C. STANFIELD, Auteur Langues : Anglais (eng) Mots-clés : Humans  Fragile X Syndrome/therapy/genetics  Genetic Therapy/psychology  Caregivers/psychology  Male  Surveys and Questionnaires  Female  Adult  Parents/psychology  Child  Middle Aged  Health Knowledge, Attitudes, Practice  Adolescent  Fragile X syndrome  Gene therapy  Qualitative  Questionnaire  Treatment  Views  by Edinburgh medical school research ethics committee (EMREC) with favourable  opinion granted on 25th April 2024 (REC Reference: 24-EMREC-011). Study  participation was voluntary and confidential. Data collection occurred between  May and July 2024. Competing interests: ACS has received grants and consultancy  fees paid to the University of Edinburgh from Novartis, Roche, Shionogi, Enthorin  Therapuetics and Zynerba. Index. décimale : PER Périodiques Résumé : BACKGROUND: There have been increasing numbers of clinical trials of medications for fragile X syndrome (FXS) in recent years, many targeted at proposed underlying cellular or circuit based mechanisms. As yet none of these have led to widespread changes in clinical practice. Genetic therapies represent a different therapeutic approach, which aim to address the genetic mechanisms by which FXS arises. Although not yet moving into human studies in FXS, this is an area of increasing research importance in neurodevelopmental conditions more broadly. It is important that families affected by FXS get the chance to give their views about future genetic therapies, given the potential controversies around genetic therapies. METHODS: We developed a questionnaire to capture caregiver views around gene therapy in FXS. The questionnaire was developed alongside a group of parents / caregivers of a child with FXS to ensure the language used was appropriate and that it would allow a variety of views to be captured. The questionnaire contained questions around current knowledge of gene therapy, what families think of gene therapy and their views on gene therapy trials taking place. Responses were analysed by thematic analysis carried out by two of the authors with data from the questionnaires being grouped into themes and subthemes. RESULTS: The questionnaire was completed by 195 individuals who are parents of, or who care for, someone with FXS. Respondents were primarily from the UK (60.5%) and the Americas (22.1%). The majority of dependants were male (86%). Responses showed a strong interest from the Fragile X community in gene therapy trials taking place, with themes emerging around quality of life, outcomes and feelings. Hope for positive change was balanced against caution about unintended consequences, the newness of the treatment and tolerability. CONCLUSION: Overall, caregivers felt hopeful, excited and interested in the prospect of gene therapy potentially providing a new treatment option, but there was some trepidation about the potential effects. Taking caregiver views into account will help inform decisions around the development and testing of any future genetic interventions. En ligne : https://dx.doi.org/10.1186/s11689-025-09629-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=576 [article] Preliminary perspectives on gene therapy in fragile X syndrome: a caregiver view [texte imprimé] / Sarah E.A. ELEY, Auteur ; Sydni WEISSGOLD, Auteur ; Andrew C. STANFIELD, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 17 (2025) Mots-clés : Humans  Fragile X Syndrome/therapy/genetics  Genetic Therapy/psychology  Caregivers/psychology  Male  Surveys and Questionnaires  Female  Adult  Parents/psychology  Child  Middle Aged  Health Knowledge, Attitudes, Practice  Adolescent  Fragile X syndrome  Gene therapy  Qualitative  Questionnaire  Treatment  Views  by Edinburgh medical school research ethics committee (EMREC) with favourable  opinion granted on 25th April 2024 (REC Reference: 24-EMREC-011). Study  participation was voluntary and confidential. Data collection occurred between  May and July 2024. Competing interests: ACS has received grants and consultancy  fees paid to the University of Edinburgh from Novartis, Roche, Shionogi, Enthorin  Therapuetics and Zynerba. Index. décimale : PER Périodiques Résumé : BACKGROUND: There have been increasing numbers of clinical trials of medications for fragile X syndrome (FXS) in recent years, many targeted at proposed underlying cellular or circuit based mechanisms. As yet none of these have led to widespread changes in clinical practice. Genetic therapies represent a different therapeutic approach, which aim to address the genetic mechanisms by which FXS arises. Although not yet moving into human studies in FXS, this is an area of increasing research importance in neurodevelopmental conditions more broadly. It is important that families affected by FXS get the chance to give their views about future genetic therapies, given the potential controversies around genetic therapies. METHODS: We developed a questionnaire to capture caregiver views around gene therapy in FXS. The questionnaire was developed alongside a group of parents / caregivers of a child with FXS to ensure the language used was appropriate and that it would allow a variety of views to be captured. The questionnaire contained questions around current knowledge of gene therapy, what families think of gene therapy and their views on gene therapy trials taking place. Responses were analysed by thematic analysis carried out by two of the authors with data from the questionnaires being grouped into themes and subthemes. RESULTS: The questionnaire was completed by 195 individuals who are parents of, or who care for, someone with FXS. Respondents were primarily from the UK (60.5%) and the Americas (22.1%). The majority of dependants were male (86%). Responses showed a strong interest from the Fragile X community in gene therapy trials taking place, with themes emerging around quality of life, outcomes and feelings. Hope for positive change was balanced against caution about unintended consequences, the newness of the treatment and tolerability. CONCLUSION: Overall, caregivers felt hopeful, excited and interested in the prospect of gene therapy potentially providing a new treatment option, but there was some trepidation about the potential effects. Taking caregiver views into account will help inform decisions around the development and testing of any future genetic interventions. En ligne : https://dx.doi.org/10.1186/s11689-025-09629-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=576

The diagnostic journey of genetically defined neurodevelopmental disorders / Juliana SIMON in Journal of Neurodevelopmental Disorders, 14 (2022)  

Permalink

Collateral Effects of Behavioral Treatment for Problem Behavior on Caregiver Stress / Patricia F. KURTZ in Journal of Autism and Developmental Disorders, 51-8 (August 2021)  

Permalink

Development and Psychometric Properties of a New Questionnaire to Assess Mental Health and Concerning Behaviors in Children and Young People with Autism Spectrum Disorder (ASD): The Assessment of Concerning Behavior (ACB) Scale / Joanne TARVER in Journal of Autism and Developmental Disorders, 51-8 (August 2021)  

Permalink

Parental distress, marital satisfaction, and functional impairments in autistic children: A family perspective from Türkiye / Nazlı ÖZOÄžUZ in Autism, 29-12 (December 2025)  

Permalink

Predictors of the Quality of Life of Informal Carers of Adults on the Autism Spectrum / Marisse T. SONIDO in Journal of Autism and Developmental Disorders, 52-7 (July 2022)  

Permalink