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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)
[article]
Titre : Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India Type de document : Texte imprimé et/ou numérique 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
in Autism Research > 5-3 (June 2012) . - p.190-200[article] Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India [Texte imprimé et/ou numérique] / 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 Short- and longer-term impacts of Child Friendly Space Interventions in Rwamwanja Refugee Settlement, Uganda / J. METZLER in Journal of Child Psychology and Psychiatry, 60-11 (November 2019)
[article]
Titre : Short- and longer-term impacts of Child Friendly Space Interventions in Rwamwanja Refugee Settlement, Uganda Type de document : Texte imprimé et/ou numérique Auteurs : J. METZLER, Auteur ; K. DIACONU, Auteur ; S. HERMOSILLA, Auteur ; R. KAIJUKA, Auteur ; G. EBULU, Auteur ; K. SAVAGE, Auteur ; Alastair AGER, Auteur Article en page(s) : p.1152-1163 Langues : Anglais (eng) Mots-clés : Humanitarian crisis impact longitudinal protection psychosocial support refugees Index. décimale : PER Périodiques Résumé : BACKGROUND: The establishment of Child Friendly Spaces (CFSs) has become a widespread intervention targeting protection and support for displaced children in humanitarian contexts. There is a lack of evidence of impact of these interventions with respect to both short-term outcomes and longer-term developmental trajectories. METHODS: We collected data from caregivers of Congolese refugee children residing in Rwamwanja Refugee Settlement at three timepoints. To assess short-term impact of CFSs, we compared indicators assessed shortly after refugees' arrival (baseline, T1) and endline (T2, three to six months after CFS implementation) amongst 430 CFS attenders and 161 nonattenders. Follow-up assessments after the end of CFS programming were conducted 18 months post-baseline (T3) with caregivers of 249 previous CFS attenders and 77 CFS nonattenders. RESULTS: In the short-term, attendance at CFSs was associated with better maintenance of psychosocial well-being (PSWB; beta = 2.093, p < .001, Cohen's d = .347) and greater increases in developmental assets (beta = 2.517, p < .001, Cohen's d = .231), with significantly stronger impacts for girls. CFS interventions meeting higher programing quality criteria were associated with greater impact on both PSWB and development assets (beta = 2.603 vs. beta = 1.793 and beta = 2.942 vs. beta = 2.337 for attenders at higher and lower-quality CFSs c.f. nonattenders, respectively). Amongst boys, benefits of program attendance were only indicated for those attending higher-quality CFS (beta = 2.084, p = .006 for PSWB). At follow-up, however, there were no discernable impacts of prior CFS attendance on any measures. Age and school attendance were the only characteristics that predicted an outcome - developmental assets - at follow-up. CONCLUSIONS: Attendance at CFSs - particularly involving higher-quality programming - supported children's well-being and development. However, sustained impact beyond active CFS programming was not demonstrated. Intervention goals and strategies in humanitarian contexts need to address the challenge of connecting children to other resources to facilitate developmental progress in conditions of protracted displacement. En ligne : http://dx.doi.org/10.1111/jcpp.13069 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=408
in Journal of Child Psychology and Psychiatry > 60-11 (November 2019) . - p.1152-1163[article] Short- and longer-term impacts of Child Friendly Space Interventions in Rwamwanja Refugee Settlement, Uganda [Texte imprimé et/ou numérique] / J. METZLER, Auteur ; K. DIACONU, Auteur ; S. HERMOSILLA, Auteur ; R. KAIJUKA, Auteur ; G. EBULU, Auteur ; K. SAVAGE, Auteur ; Alastair AGER, Auteur . - p.1152-1163.
Langues : Anglais (eng)
in Journal of Child Psychology and Psychiatry > 60-11 (November 2019) . - p.1152-1163
Mots-clés : Humanitarian crisis impact longitudinal protection psychosocial support refugees Index. décimale : PER Périodiques Résumé : BACKGROUND: The establishment of Child Friendly Spaces (CFSs) has become a widespread intervention targeting protection and support for displaced children in humanitarian contexts. There is a lack of evidence of impact of these interventions with respect to both short-term outcomes and longer-term developmental trajectories. METHODS: We collected data from caregivers of Congolese refugee children residing in Rwamwanja Refugee Settlement at three timepoints. To assess short-term impact of CFSs, we compared indicators assessed shortly after refugees' arrival (baseline, T1) and endline (T2, three to six months after CFS implementation) amongst 430 CFS attenders and 161 nonattenders. Follow-up assessments after the end of CFS programming were conducted 18 months post-baseline (T3) with caregivers of 249 previous CFS attenders and 77 CFS nonattenders. RESULTS: In the short-term, attendance at CFSs was associated with better maintenance of psychosocial well-being (PSWB; beta = 2.093, p < .001, Cohen's d = .347) and greater increases in developmental assets (beta = 2.517, p < .001, Cohen's d = .231), with significantly stronger impacts for girls. CFS interventions meeting higher programing quality criteria were associated with greater impact on both PSWB and development assets (beta = 2.603 vs. beta = 1.793 and beta = 2.942 vs. beta = 2.337 for attenders at higher and lower-quality CFSs c.f. nonattenders, respectively). Amongst boys, benefits of program attendance were only indicated for those attending higher-quality CFS (beta = 2.084, p = .006 for PSWB). At follow-up, however, there were no discernable impacts of prior CFS attendance on any measures. Age and school attendance were the only characteristics that predicted an outcome - developmental assets - at follow-up. CONCLUSIONS: Attendance at CFSs - particularly involving higher-quality programming - supported children's well-being and development. However, sustained impact beyond active CFS programming was not demonstrated. Intervention goals and strategies in humanitarian contexts need to address the challenge of connecting children to other resources to facilitate developmental progress in conditions of protracted displacement. En ligne : http://dx.doi.org/10.1111/jcpp.13069 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=408 The Extended Version of the Strengths and Difficulties Questionnaire as a Guide to Child Psychiatric Caseness and Consequent Burden / Robert GOODMAN in Journal of Child Psychology and Psychiatry, 40-5 (July 1999)
[article]
Titre : The Extended Version of the Strengths and Difficulties Questionnaire as a Guide to Child Psychiatric Caseness and Consequent Burden Type de document : Texte imprimé et/ou numérique Auteurs : Robert GOODMAN, Auteur Année de publication : 1999 Article en page(s) : p.791-799 Langues : Anglais (eng) Mots-clés : Behaviour problems questionnaires screening burden child psychiatric disorder impact Index. décimale : PER Périodiques Résumé : The Strengths and Difficulties Questionnaire (SDQ) is a brief behavioural screening questionnaire that asks about children's and teenagers’ symptoms and positive attributes; the extended version also includes an impact supplement that asks if the respondent thinks the young person has a problem, and if so, enquires further about chronicity, distress, social impairment, and burden for others. Closely similar versions are completed by parents, teachers, and young people aged 11 or more. The validation study involved two groups of 5–15-year-olds: a community sample (N= 467) and a psychiatric clinic sample (N= 232). The two groups had markedly different distributions on the measures of perceived difficulties, impact (distress plus social impairment), and burden. Impact scores were better than symptom scores at discriminating between the community and clinic samples; discrimination based on the single “Is there a problem?” item was almost as good. The SDQ burden rating correlated well (r= .74) with a standardised interview rating of burden. For clinicians and researchers with an interest in psychiatric caseness and the determinants of service use, the impact supplement of the extended SDQ appears to provide useful additional information without taking up much more of respondents' time. Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=124
in Journal of Child Psychology and Psychiatry > 40-5 (July 1999) . - p.791-799[article] The Extended Version of the Strengths and Difficulties Questionnaire as a Guide to Child Psychiatric Caseness and Consequent Burden [Texte imprimé et/ou numérique] / Robert GOODMAN, Auteur . - 1999 . - p.791-799.
Langues : Anglais (eng)
in Journal of Child Psychology and Psychiatry > 40-5 (July 1999) . - p.791-799
Mots-clés : Behaviour problems questionnaires screening burden child psychiatric disorder impact Index. décimale : PER Périodiques Résumé : The Strengths and Difficulties Questionnaire (SDQ) is a brief behavioural screening questionnaire that asks about children's and teenagers’ symptoms and positive attributes; the extended version also includes an impact supplement that asks if the respondent thinks the young person has a problem, and if so, enquires further about chronicity, distress, social impairment, and burden for others. Closely similar versions are completed by parents, teachers, and young people aged 11 or more. The validation study involved two groups of 5–15-year-olds: a community sample (N= 467) and a psychiatric clinic sample (N= 232). The two groups had markedly different distributions on the measures of perceived difficulties, impact (distress plus social impairment), and burden. Impact scores were better than symptom scores at discriminating between the community and clinic samples; discrimination based on the single “Is there a problem?” item was almost as good. The SDQ burden rating correlated well (r= .74) with a standardised interview rating of burden. For clinicians and researchers with an interest in psychiatric caseness and the determinants of service use, the impact supplement of the extended SDQ appears to provide useful additional information without taking up much more of respondents' time. Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=124 Changes in spending and service use after a state autism insurance mandate / B. SALONER in Autism, 23-1 (January 2019)
[article]
Titre : Changes in spending and service use after a state autism insurance mandate Type de document : Texte imprimé et/ou numérique Auteurs : B. SALONER, Auteur ; C. L. BARRY, Auteur Article en page(s) : p.167-174 Langues : Anglais (eng) Mots-clés : access to care health insurance insurance mandate out-of-pocket spending utilization spectrum disorder children impact costs Psychology Index. décimale : PER Périodiques Résumé : Almost all states have insurance coverage mandates for childhood autism spectrum disorder treatment, yet little is known about how mandates affect spending and service use. We evaluated a 2011 Kansas law mandating comprehensive coverage of autism spectrum disorder treatments in the State Employee Health Plan. Data were extracted from the Kansas All-Payer Claims Database from 2009 to 2013 for enrollees of State Employee Health Plan and private health plans. The sample included children aged 0-18 years with >2 claims with an autism spectrum disorder diagnosis insured through State Employee Health Plan or a comparison group enrolled through private health plans. We estimated differences-in-differences regression models to compare trends among State Employee Health Plan to privately insured children. Average annual total spending on autism spectrum disorder services increased by US$912 (95% confidence interval: US$331-US$1492) and average annual out-of-pocket spending on autism spectrum disorder services increased by US$138 (95% confidence interval: US$53-US$223) among diagnosed children in the State Employee Health Plan relative to the comparison group following the mandate, representing 92% and 75% increases over baseline total and out-of-pocket autism spectrum disorder spending, respectively. Average annual quantity of outpatient autism spectrum disorder services increased by 15.0 services (95% confidence interval: 8.4-21.6) among children in the State Employee Health Plan, more than doubling the baseline average. Implementation of a comprehensive autism spectrum disorder mandate in the Kansas State Employee Health Plan was associated with substantial increases in service use and spending for autism spectrum disorder treatment among autism spectrum disorder-diagnosed children. En ligne : http://dx.doi.org/10.1177/1362361317728205 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379
in Autism > 23-1 (January 2019) . - p.167-174[article] Changes in spending and service use after a state autism insurance mandate [Texte imprimé et/ou numérique] / B. SALONER, Auteur ; C. L. BARRY, Auteur . - p.167-174.
Langues : Anglais (eng)
in Autism > 23-1 (January 2019) . - p.167-174
Mots-clés : access to care health insurance insurance mandate out-of-pocket spending utilization spectrum disorder children impact costs Psychology Index. décimale : PER Périodiques Résumé : Almost all states have insurance coverage mandates for childhood autism spectrum disorder treatment, yet little is known about how mandates affect spending and service use. We evaluated a 2011 Kansas law mandating comprehensive coverage of autism spectrum disorder treatments in the State Employee Health Plan. Data were extracted from the Kansas All-Payer Claims Database from 2009 to 2013 for enrollees of State Employee Health Plan and private health plans. The sample included children aged 0-18 years with >2 claims with an autism spectrum disorder diagnosis insured through State Employee Health Plan or a comparison group enrolled through private health plans. We estimated differences-in-differences regression models to compare trends among State Employee Health Plan to privately insured children. Average annual total spending on autism spectrum disorder services increased by US$912 (95% confidence interval: US$331-US$1492) and average annual out-of-pocket spending on autism spectrum disorder services increased by US$138 (95% confidence interval: US$53-US$223) among diagnosed children in the State Employee Health Plan relative to the comparison group following the mandate, representing 92% and 75% increases over baseline total and out-of-pocket autism spectrum disorder spending, respectively. Average annual quantity of outpatient autism spectrum disorder services increased by 15.0 services (95% confidence interval: 8.4-21.6) among children in the State Employee Health Plan, more than doubling the baseline average. Implementation of a comprehensive autism spectrum disorder mandate in the Kansas State Employee Health Plan was associated with substantial increases in service use and spending for autism spectrum disorder treatment among autism spectrum disorder-diagnosed children. En ligne : http://dx.doi.org/10.1177/1362361317728205 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children / Aspasia Stacey RABBA ; Poulomee DATTA ; Emma DRESENS ; Rena WANG ; Lin CONG ; Ngoc DANG ; Gabrielle HALL ; Melanie HEYWORTH ; Wenn LAWSON ; Patricia LEE ; Rozanna LILLEY ; Emily MA ; Hau T T NGUYEN ; Kim-Van NGUYEN ; Phuc NGUYEN ; Chong Tze YEOW ; Elizabeth PELLICANO in Autism & Developmental Language Impairments, 8 (January-December 2023)
[article]
Titre : 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children Type de document : Texte imprimé et/ou numérique Auteurs : Aspasia Stacey RABBA, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Rena WANG, Auteur ; Lin CONG, Auteur ; Ngoc DANG, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Emily MA, Auteur ; Hau T T NGUYEN, Auteur ; Kim-Van NGUYEN, Auteur ; Phuc NGUYEN, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur Langues : Anglais (eng) Mots-clés : Participatory research community participation cultural and linguistic diversity autism impact Index. décimale : PER Périodiques Résumé : Background and aimsParticipatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project.MethodsUsing key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study.ResultsWe found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being.ConclusionsThese findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners.ImplicationsThis study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities. En ligne : https://dx.doi.org/10.1177/23969415231210482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518
in Autism & Developmental Language Impairments > 8 (January-December 2023)[article] 'It's really important to be collaborating': Experiences of participatory research for Chinese and Vietnamese parents of autistic children [Texte imprimé et/ou numérique] / Aspasia Stacey RABBA, Auteur ; Poulomee DATTA, Auteur ; Emma DRESENS, Auteur ; Rena WANG, Auteur ; Lin CONG, Auteur ; Ngoc DANG, Auteur ; Gabrielle HALL, Auteur ; Melanie HEYWORTH, Auteur ; Wenn LAWSON, Auteur ; Patricia LEE, Auteur ; Rozanna LILLEY, Auteur ; Emily MA, Auteur ; Hau T T NGUYEN, Auteur ; Kim-Van NGUYEN, Auteur ; Phuc NGUYEN, Auteur ; Chong Tze YEOW, Auteur ; Elizabeth PELLICANO, Auteur.
Langues : Anglais (eng)
in Autism & Developmental Language Impairments > 8 (January-December 2023)
Mots-clés : Participatory research community participation cultural and linguistic diversity autism impact Index. décimale : PER Périodiques Résumé : Background and aimsParticipatory research involves academic partners working together with the community that is affected by research to make decisions about that research. Such approaches often result in research that is more respectful of, and responsive to, community preferences - and is vital in the context of autism research with culturally and linguistically diverse (CALD) communities. Whilst participatory approaches are becoming more commonplace within CALD autism research, no studies have explored the experiences of being involved in autism research from the perspectives of CALD community partners over the course of a study. This paper intended to address this gap by reporting on the experiences of CALD parents of autistic children who were community partners in a 1-year Australian research project exploring home-school partnerships for CALD parents of autistic children. We aimed to: (1) report on how parents' involvement in the research process shaped the home-school partnerships study over time and (2) understand their experiences of being community partners on the home-school partnerships project.MethodsUsing key principles of participatory approaches, we established Chinese and Vietnamese parent advisory groups to contribute to a project exploring home-school partnerships for parents of autistic children from CALD backgrounds in Australia. Advisory groups included parents of autistic children from Chinese/Vietnamese backgrounds, as well as interpreters, professionals and researchers. We documented how parents' participation as community partners shaped the home-school partnerships study over the course of the project. We also elicited parents' own views and experiences of being community partners through informal, open-ended questions at the beginning and end of the study.ResultsWe found that parents' input fundamentally shaped the broader home-school partnership study, from meaningful, accurate translation of interview schedules through to making decisions regarding community-specific recommendations and dissemination plans. Parents themselves reported being keen to collaborate and to hear and share opinions for the purpose of the home-school partnership study - although they noted how emotionally difficult sharing their stories could be. While they initially had some concerns about combining being involved as a community partner with their existing responsibilities, ultimately, parents were surprised by the scope of the home-school partnership study and their level of involvement as community partners. Through hearing others' stories and sharing their own in advisory group meetings, parents reported ancillary benefits of their involvement, including increased self-advocacy and well-being.ConclusionsThese findings show how research that is conducted in partnership with diverse members of the autism community has the capacity to improve the quality of the research and benefit community partners.ImplicationsThis study clearly documents the benefits and potential challenges of participatory approaches with CALD communities. These findings emphasise to researchers and funders the importance of including extra time and money within budgets in order to produce meaningful research that is respectful and responsive to communities. En ligne : https://dx.doi.org/10.1177/23969415231210482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 Self-reported stress among adolescent siblings of individuals with autism spectrum disorder and Down syndrome / C. M. SHIVERS in Autism, 23-1 (January 2019)
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