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Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware / S. SRINIVASAN in Autism Research, 14-8 (August 2021)
[article]
Titre : Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware Type de document : Texte imprimé et/ou numérique Auteurs : S. SRINIVASAN, Auteur ; A. EKBLADH, Auteur ; B. FREEDMAN, Auteur ; Anjana N. BHAT, Auteur Article en page(s) : p.1736-1758 Langues : Anglais (eng) Mots-clés : Activities of Daily Living Adolescent Autism Spectrum Disorder/therapy Caregivers Child Counseling Delaware Health Services Accessibility Health Services Needs and Demand Humans Needs Assessment Autism Spectrum Disorder caregivers children and youth family support healthcare needs assessment unmet needs declare. Index. décimale : PER Périodiques Résumé : The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24?years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20-24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families. LAY SUMMARY: A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to child/youth unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant's functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD. En ligne : http://dx.doi.org/10.1002/aur.2514 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449
in Autism Research > 14-8 (August 2021) . - p.1736-1758[article] Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with autism spectrum disorder in Delaware [Texte imprimé et/ou numérique] / S. SRINIVASAN, Auteur ; A. EKBLADH, Auteur ; B. FREEDMAN, Auteur ; Anjana N. BHAT, Auteur . - p.1736-1758.
Langues : Anglais (eng)
in Autism Research > 14-8 (August 2021) . - p.1736-1758
Mots-clés : Activities of Daily Living Adolescent Autism Spectrum Disorder/therapy Caregivers Child Counseling Delaware Health Services Accessibility Health Services Needs and Demand Humans Needs Assessment Autism Spectrum Disorder caregivers children and youth family support healthcare needs assessment unmet needs declare. Index. décimale : PER Périodiques Résumé : The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24?years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 and 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20-24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted child/youth unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant's functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families. LAY SUMMARY: A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to child/youth unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant's functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD. En ligne : http://dx.doi.org/10.1002/aur.2514 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=449 Enhancing parental well-being and coping through a family-centred short course for Iranian parents of children with an autism spectrum disorder / Sayyed Ali SAMADI in Autism, 17-1 (January 2013)
[article]
Titre : Enhancing parental well-being and coping through a family-centred short course for Iranian parents of children with an autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Sayyed Ali SAMADI, Auteur ; Roy MCCONKEY, Auteur ; Greg KELLY, Auteur Année de publication : 2013 Article en page(s) : p.27-43 Langues : Anglais (eng) Mots-clés : Parent education family support autism spectrum disorder Iran Index. décimale : PER Périodiques Résumé : Parents of children with Autism Spectrum Disorders (ASD) generally experience high levels of stress and report poorer emotional well-being and family functioning compared to parents of children with other disabilities. They also tend to rely on emotional rather than problem-focused coping strategies. Seven group-based sessions were offered to two groups of parents of children with ASD in Iran (37 in all). In addition to providing information about ASD emphasis was placed on families sharing their experiences and learning from one another. A pre-post, cross-over design was used to evaluate the specific impact of the course. The changes found among the parents in the first group were replicated with the second group. Moreover the changes were sustained up to 15 weeks after the course ended. Although there were variations across the parents, in general they reported feeling less stress, had better emotional wellbeing and family functioning and made more use of problem-focused coping strategies. The changes were attributed mainly to an increase in the informal supports among the parents and their feelings of empowerment. A resource pack has been developed to enable the group sessions to be easily repeated and for facilitators to be trained in its use. En ligne : http://dx.doi.org/10.1177/1362361311435156 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192
in Autism > 17-1 (January 2013) . - p.27-43[article] Enhancing parental well-being and coping through a family-centred short course for Iranian parents of children with an autism spectrum disorder [Texte imprimé et/ou numérique] / Sayyed Ali SAMADI, Auteur ; Roy MCCONKEY, Auteur ; Greg KELLY, Auteur . - 2013 . - p.27-43.
Langues : Anglais (eng)
in Autism > 17-1 (January 2013) . - p.27-43
Mots-clés : Parent education family support autism spectrum disorder Iran Index. décimale : PER Périodiques Résumé : Parents of children with Autism Spectrum Disorders (ASD) generally experience high levels of stress and report poorer emotional well-being and family functioning compared to parents of children with other disabilities. They also tend to rely on emotional rather than problem-focused coping strategies. Seven group-based sessions were offered to two groups of parents of children with ASD in Iran (37 in all). In addition to providing information about ASD emphasis was placed on families sharing their experiences and learning from one another. A pre-post, cross-over design was used to evaluate the specific impact of the course. The changes found among the parents in the first group were replicated with the second group. Moreover the changes were sustained up to 15 weeks after the course ended. Although there were variations across the parents, in general they reported feeling less stress, had better emotional wellbeing and family functioning and made more use of problem-focused coping strategies. The changes were attributed mainly to an increase in the informal supports among the parents and their feelings of empowerment. A resource pack has been developed to enable the group sessions to be easily repeated and for facilitators to be trained in its use. En ligne : http://dx.doi.org/10.1177/1362361311435156 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192 Understanding perceptions underlying the self-reported stress among parents of adolescents with autism spectrum disorder: Considerations for supporting families / Natalie S. RAFF in Research in Autism Spectrum Disorders, 84 (June 2021)
[article]
Titre : Understanding perceptions underlying the self-reported stress among parents of adolescents with autism spectrum disorder: Considerations for supporting families Type de document : Texte imprimé et/ou numérique Auteurs : Natalie S. RAFF, Auteur ; Sarah S. MIRE, Auteur ; Leslie FRANKEL, Auteur ; Samuel D. MCQUILLIN, Auteur ; Katherine LOVELAND, Auteur ; Andrew DAIRE, Auteur ; Stacey GREBE, Auteur ; Georgina ROSENBROCK, Auteur Article en page(s) : 101770 Langues : Anglais (eng) Mots-clés : Adolescents Autism spectrum disorder Family support IPQ-R-ASD Parenting stress Index. décimale : PER Périodiques Résumé : Background Parents raising adolescents with autism spectrum disorder (ASD) often report higher stress than other parents. The influence of parents’ internal, or cognitive, experiences (i.e., their own perceptions) on this elevated stress has yet to be explored. Addressing this gap may reveal opportunities for enhancing support for families by elucidating malleable targets for reducing parents’ self-reported stress and/or informing family-focused intervention. The Double ABCX Model of Family Adaptation is a framework for understanding how perceptions, social support, and personal resources (i.e., coping) may affect stress. Methods We examined parents’ perceptions about ASD, perceived support, and coping among 214 parents of adolescents with ASD. Regression analyses were used to explore whether these factors were associated with parenting stress among those raising adolescents with ASD. Moderation effects of positive coping on the relationship between parent perceptions and parenting stress were also explored. Results Parent perceptions about within family support, the extent of ASD symptom predictability, and treatment being able to ‘control’ ASD were related to parenting stress. However, positive coping did not moderate the relationship between these perceptions and parenting stress. Conclusions Study findings emphasize significant associations between specific parental perceptions and the self-reported stress among families of adolescents with ASD. Particularly important to parenting stress were how much parents’ perceived adequate support within the family, that treatment was useful for controlling their adolescent’s ASD, and that their adolescent’s symptoms were predictable. These findings suggest that the way parents think about their adolescents’ ASD and the adequacy of the support within their own families are associated with parenting stress, and therefore may serve as treatment targets for positively affecting whole family outcomes, as well as foundations for additional research. En ligne : https://doi.org/10.1016/j.rasd.2021.101770 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=446
in Research in Autism Spectrum Disorders > 84 (June 2021) . - 101770[article] Understanding perceptions underlying the self-reported stress among parents of adolescents with autism spectrum disorder: Considerations for supporting families [Texte imprimé et/ou numérique] / Natalie S. RAFF, Auteur ; Sarah S. MIRE, Auteur ; Leslie FRANKEL, Auteur ; Samuel D. MCQUILLIN, Auteur ; Katherine LOVELAND, Auteur ; Andrew DAIRE, Auteur ; Stacey GREBE, Auteur ; Georgina ROSENBROCK, Auteur . - 101770.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 84 (June 2021) . - 101770
Mots-clés : Adolescents Autism spectrum disorder Family support IPQ-R-ASD Parenting stress Index. décimale : PER Périodiques Résumé : Background Parents raising adolescents with autism spectrum disorder (ASD) often report higher stress than other parents. The influence of parents’ internal, or cognitive, experiences (i.e., their own perceptions) on this elevated stress has yet to be explored. Addressing this gap may reveal opportunities for enhancing support for families by elucidating malleable targets for reducing parents’ self-reported stress and/or informing family-focused intervention. The Double ABCX Model of Family Adaptation is a framework for understanding how perceptions, social support, and personal resources (i.e., coping) may affect stress. Methods We examined parents’ perceptions about ASD, perceived support, and coping among 214 parents of adolescents with ASD. Regression analyses were used to explore whether these factors were associated with parenting stress among those raising adolescents with ASD. Moderation effects of positive coping on the relationship between parent perceptions and parenting stress were also explored. Results Parent perceptions about within family support, the extent of ASD symptom predictability, and treatment being able to ‘control’ ASD were related to parenting stress. However, positive coping did not moderate the relationship between these perceptions and parenting stress. Conclusions Study findings emphasize significant associations between specific parental perceptions and the self-reported stress among families of adolescents with ASD. Particularly important to parenting stress were how much parents’ perceived adequate support within the family, that treatment was useful for controlling their adolescent’s ASD, and that their adolescent’s symptoms were predictable. These findings suggest that the way parents think about their adolescents’ ASD and the adequacy of the support within their own families are associated with parenting stress, and therefore may serve as treatment targets for positively affecting whole family outcomes, as well as foundations for additional research. En ligne : https://doi.org/10.1016/j.rasd.2021.101770 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=446