Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India / Gauri DIVAN in Autism Research, 5-3 (June 2012)  

Public ISBD [article]  inAutism Research > 5-3 (June 2012) . - p.190-200 Titre : Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India Type de document : texte imprimé Auteurs : Gauri DIVAN, Auteur ; Vivek VAJARATKAR, Auteur ; Miraj U. DESAI, Auteur ; Luisa STRIK-LIEVERS, Auteur ; Vikram PATEL, Auteur Année de publication : 2012 Article en page(s) : p.190-200 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorders  India  impact  qualitative  Faire face Index. décimale : PER Périodiques Résumé : Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews and nine focus group discussions were carried out with families of children with ASD and key community stakeholders such as special educators, teachers, and parents of typically developing children. This qualitative data was triangulated to explore the experiences, life impact, and unmet needs of raising a child with ASD. Key findings suggest that raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personal sphere but also extending into the wider community with negative experiences of discrimination. Third, parents actively respond to these challenges through a range of approaches with help from existing and new social support networks and health care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasingly isolated families and the limited access to multidisciplinary evidence-based services for ASD. En ligne : http://dx.doi.org/10.1002/aur.1225 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=163 [article] Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India [texte imprimé] / Gauri DIVAN, Auteur ; Vivek VAJARATKAR, Auteur ; Miraj U. DESAI, Auteur ; Luisa STRIK-LIEVERS, Auteur ; Vikram PATEL, Auteur . - 2012 . - p.190-200. Langues : Anglais (eng) in Autism Research > 5-3 (June 2012) . - p.190-200 Mots-clés : Autism Spectrum Disorders  India  impact  qualitative  Faire face Index. décimale : PER Périodiques Résumé : Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews and nine focus group discussions were carried out with families of children with ASD and key community stakeholders such as special educators, teachers, and parents of typically developing children. This qualitative data was triangulated to explore the experiences, life impact, and unmet needs of raising a child with ASD. Key findings suggest that raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personal sphere but also extending into the wider community with negative experiences of discrimination. Third, parents actively respond to these challenges through a range of approaches with help from existing and new social support networks and health care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasingly isolated families and the limited access to multidisciplinary evidence-based services for ASD. En ligne : http://dx.doi.org/10.1002/aur.1225 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=163

"I was Confused ? and Still am" Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study / Supriya BHAVNANI in Journal of Autism and Developmental Disorders, 52-4 (April 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1778-1788 Titre : "I was Confused ? and Still am" Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study Type de document : texte imprimé Auteurs : Supriya BHAVNANI, Auteur ; Georgia LOCKWOOD ESTRIN, Auteur ; Rashi ARORA, Auteur ; Divya KUMAR, Auteur ; Minal KAKRA, Auteur ; Vivek VAJARATKAR, Auteur ; Monica JUNEJA, Auteur ; Sheffali GULATI, Auteur ; Vikram PATEL, Auteur ; Jonathan GREEN, Auteur ; Gauri DIVAN, Auteur Article en page(s) : p.1778-1788 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/diagnosis  Autistic Disorder/diagnosis  Caregivers  Child  Child, Preschool  Humans  India  Autism Spectrum Disorders  Delay  Diagnosis  Help-seeking pathway  content of this article. Index. décimale : PER Périodiques Résumé : Timely recognition of autism in children is integral to improve developmental outcomes. This study used mixed-methods (84 case-registers and 20 in-depth interviews with caregivers of children with a diagnosis of autism) to explore the extent to which the nature of parental concerns and prior knowledge of developmental disorders impact the time between symptom recognition and autism diagnosis, and the contextual family, societal and health-system related factors that impede the autism help-seeking pathway. Lack of awareness of age-appropriate child developmental milestones, apparent amongst the community and health professionals, contributed to a 1.5-year delay between parental concerns and autism diagnosis. Recommendations to shorten this help-seeking pathway include harnessing the potential of non-specialist workers to increase awareness and enable developmental monitoring of young children through scalable tools. En ligne : http://dx.doi.org/10.1007/s10803-021-05047-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=476 [article] "I was Confused ? and Still am" Barriers Impacting the Help-Seeking Pathway for an Autism Diagnosis in Urban North India: A Mixed Methods Study [texte imprimé] / Supriya BHAVNANI, Auteur ; Georgia LOCKWOOD ESTRIN, Auteur ; Rashi ARORA, Auteur ; Divya KUMAR, Auteur ; Minal KAKRA, Auteur ; Vivek VAJARATKAR, Auteur ; Monica JUNEJA, Auteur ; Sheffali GULATI, Auteur ; Vikram PATEL, Auteur ; Jonathan GREEN, Auteur ; Gauri DIVAN, Auteur . - p.1778-1788. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1778-1788 Mots-clés : Autism Spectrum Disorder/diagnosis  Autistic Disorder/diagnosis  Caregivers  Child  Child, Preschool  Humans  India  Autism Spectrum Disorders  Delay  Diagnosis  Help-seeking pathway  content of this article. Index. décimale : PER Périodiques Résumé : Timely recognition of autism in children is integral to improve developmental outcomes. This study used mixed-methods (84 case-registers and 20 in-depth interviews with caregivers of children with a diagnosis of autism) to explore the extent to which the nature of parental concerns and prior knowledge of developmental disorders impact the time between symptom recognition and autism diagnosis, and the contextual family, societal and health-system related factors that impede the autism help-seeking pathway. Lack of awareness of age-appropriate child developmental milestones, apparent amongst the community and health professionals, contributed to a 1.5-year delay between parental concerns and autism diagnosis. Recommendations to shorten this help-seeking pathway include harnessing the potential of non-specialist workers to increase awareness and enable developmental monitoring of young children through scalable tools. En ligne : http://dx.doi.org/10.1007/s10803-021-05047-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=476

The Feasibility and Effectiveness of PASS Plus, A Lay Health Worker Delivered Comprehensive Intervention for Autism Spectrum Disorders: Pilot RCT in a Rural Low and Middle Income Country Setting / Gauri DIVAN in Autism Research, 12-2 (February 2019)  

Public ISBD [article]  inAutism Research > 12-2 (February 2019) . - p.328-339 Titre : The Feasibility and Effectiveness of PASS Plus, A Lay Health Worker Delivered Comprehensive Intervention for Autism Spectrum Disorders: Pilot RCT in a Rural Low and Middle Income Country Setting Type de document : texte imprimé Auteurs : Gauri DIVAN, Auteur ; Vivek VAJARATKAR, Auteur ; Percy CARDOZO, Auteur ; Shilpa HUZURBAZAR, Auteur ; Mamta VERMA, Auteur ; Elizabeth HOWARTH, Auteur ; Richard EMSLEY, Auteur ; Caroline TAYLOR, Auteur ; Vikram PATEL, Auteur ; Jonathan GREEN, Auteur Article en page(s) : p.328-339 Langues : Anglais (eng) Mots-clés : clinical trials  co-morbid conditions  intervention  parent-mediated  task sharing Index. décimale : PER Périodiques Résumé : The treatment gap for autism globally is high. Our previous PASS intervention, delivered by community based lay health workers, showed effectiveness. This article reports the development and evaluation of a new "PASS 'Plus'" intervention in a rural population in India. Using formative research methods, we supplemented the PASS intervention with additional (Plus) modules to address autism comorbidities. This is the first time that a rigorous methodology has been used to evaluate autism symptom outcomes in a low and middle-income country setting. 40 parent-child dyads were recruited in a pilot randomized controlled trial against usual care (mean age 65 months (34 boys); n = 19 PASS Plus, n = 21 UC). 89% of intervention families partially or entirely completed the 12-session intervention. Intention to treat analysis showed a reduction in mean scores of autism symptom severity, though the confidence interval contains zero, (adjusted mean difference AMD -2.42 95% CI -7.75, 2.92; ES 0.22); large treatment effects on proximal outcomes of proportion of parent synchronous responses (AMD 0.35; 95% CI 0.18, 0.52; effect size ES 3.97) and proportion of child communication initiations with parent (AMD 0.17; 95% CI 0.03, 0.32; ES 1.02). Confidence intervals for effects on mutual shared attention (AMD 0.10; 95% CI -0.07, 0.27; ES 0.5) and co-morbid symptoms (AMD -9.0; 95% CI -24.26, 6.26; ES 0.32) contained zero. There were significant effects to improve parental mental health. PASS Plus shows good feasibility and adds to the evidence of the effectiveness of task sharing complex autism interventions to lay health workers in India. Autism Res 2019, 12: 328-339 (c) 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This article describes the development of a comprehensive, community-delivered, intervention for young children with autism, which combines a previously developed parent-mediated communication intervention with support for co-morbid problems like challenging behaviors and sensory sensitivities. The unique aspect of this intervention is that it can be delivered by community health workers, addressing the lack of specialists in low resource settings. Our study reports the encouraging findings of a pilot trial evaluating its feasibility and effectiveness. En ligne : http://dx.doi.org/10.1002/aur.1978 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=383 [article] The Feasibility and Effectiveness of PASS Plus, A Lay Health Worker Delivered Comprehensive Intervention for Autism Spectrum Disorders: Pilot RCT in a Rural Low and Middle Income Country Setting [texte imprimé] / Gauri DIVAN, Auteur ; Vivek VAJARATKAR, Auteur ; Percy CARDOZO, Auteur ; Shilpa HUZURBAZAR, Auteur ; Mamta VERMA, Auteur ; Elizabeth HOWARTH, Auteur ; Richard EMSLEY, Auteur ; Caroline TAYLOR, Auteur ; Vikram PATEL, Auteur ; Jonathan GREEN, Auteur . - p.328-339. Langues : Anglais (eng) in Autism Research > 12-2 (February 2019) . - p.328-339 Mots-clés : clinical trials  co-morbid conditions  intervention  parent-mediated  task sharing Index. décimale : PER Périodiques Résumé : The treatment gap for autism globally is high. Our previous PASS intervention, delivered by community based lay health workers, showed effectiveness. This article reports the development and evaluation of a new "PASS 'Plus'" intervention in a rural population in India. Using formative research methods, we supplemented the PASS intervention with additional (Plus) modules to address autism comorbidities. This is the first time that a rigorous methodology has been used to evaluate autism symptom outcomes in a low and middle-income country setting. 40 parent-child dyads were recruited in a pilot randomized controlled trial against usual care (mean age 65 months (34 boys); n = 19 PASS Plus, n = 21 UC). 89% of intervention families partially or entirely completed the 12-session intervention. Intention to treat analysis showed a reduction in mean scores of autism symptom severity, though the confidence interval contains zero, (adjusted mean difference AMD -2.42 95% CI -7.75, 2.92; ES 0.22); large treatment effects on proximal outcomes of proportion of parent synchronous responses (AMD 0.35; 95% CI 0.18, 0.52; effect size ES 3.97) and proportion of child communication initiations with parent (AMD 0.17; 95% CI 0.03, 0.32; ES 1.02). Confidence intervals for effects on mutual shared attention (AMD 0.10; 95% CI -0.07, 0.27; ES 0.5) and co-morbid symptoms (AMD -9.0; 95% CI -24.26, 6.26; ES 0.32) contained zero. There were significant effects to improve parental mental health. PASS Plus shows good feasibility and adds to the evidence of the effectiveness of task sharing complex autism interventions to lay health workers in India. Autism Res 2019, 12: 328-339 (c) 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This article describes the development of a comprehensive, community-delivered, intervention for young children with autism, which combines a previously developed parent-mediated communication intervention with support for co-morbid problems like challenging behaviors and sensory sensitivities. The unique aspect of this intervention is that it can be delivered by community health workers, addressing the lack of specialists in low resource settings. Our study reports the encouraging findings of a pilot trial evaluating its feasibility and effectiveness. En ligne : http://dx.doi.org/10.1002/aur.1978 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=383

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