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Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians / Sarah WIGHAM in Autism, 27-2 (February 2023)
[article]
Titre : Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians Type de document : Texte imprimé et/ou numérique Auteurs : Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ann LE COUTEUR, Auteur ; Colin WILSON, Auteur ; Ian ENSUM, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.344-355 Langues : Anglais (eng) Mots-clés : adult autism Delphi consensus optimal services post-diagnostic support stakeholder involvement Index. décimale : PER Périodiques Résumé : Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally. En ligne : http://dx.doi.org/10.1177/13623613221097502 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493
in Autism > 27-2 (February 2023) . - p.344-355[article] Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians [Texte imprimé et/ou numérique] / Sarah WIGHAM, Auteur ; Barry INGHAM, Auteur ; Ann LE COUTEUR, Auteur ; Colin WILSON, Auteur ; Ian ENSUM, Auteur ; Jeremy R. PARR, Auteur . - p.344-355.
Langues : Anglais (eng)
in Autism > 27-2 (February 2023) . - p.344-355
Mots-clés : adult autism Delphi consensus optimal services post-diagnostic support stakeholder involvement Index. décimale : PER Périodiques Résumé : Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally. En ligne : http://dx.doi.org/10.1177/13623613221097502 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493 Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults / Caroline HEARST ; Maria ASHWORTH ; Jade DAVIES in Autism & Developmental Language Impairments, 8 (January-December 2023)
[article]
Titre : Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur Langues : Anglais (eng) Mots-clés : Post-diagnostic support peer group psychoeducation telehealth autistic adults Index. décimale : PER Périodiques Résumé : Background & aimsExploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.MethodsWe used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.ResultsExperiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups).ConclusionsThe online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.ImplicationsFrom the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised. En ligne : https://dx.doi.org/10.1177/23969415231189608 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] Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults [Texte imprimé et/ou numérique] / Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur.
Langues : Anglais (eng)
in Autism & Developmental Language Impairments > 8 (January-December 2023)
Mots-clés : Post-diagnostic support peer group psychoeducation telehealth autistic adults Index. décimale : PER Périodiques Résumé : Background & aimsExploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded.MethodsWe used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis.ResultsExperiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups).ConclusionsThe online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs.ImplicationsFrom the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised. En ligne : https://dx.doi.org/10.1177/23969415231189608 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=518 Parents’ views of the National Autistic Society’s EarlyBird Plus Programme / Anna L. CUTRESS in Autism, 18-6 (August 2014)
[article]
Titre : Parents’ views of the National Autistic Society’s EarlyBird Plus Programme Type de document : Texte imprimé et/ou numérique Auteurs : Anna L. CUTRESS, Auteur ; Steven J. MUNCER, Auteur Article en page(s) : p.651-657 Langues : Anglais (eng) Mots-clés : autism EarlyBird Plus parent training programme post-diagnostic support psychoeducation Index. décimale : PER Périodiques Résumé : Parent training interventions are recommended for parents soon after their child’s autism spectrum condition diagnosis with the aim of improving parents’ psychological well-being and coping, as well as the child’s behaviour. This report explores parents’ views of the EarlyBird Plus Programme through data collected routinely in the post-programme questionnaire. Participants’ reported increased understanding of autism and improvements in their communication with their child and their ability to manage their child’s behaviour. Parents appeared to value the opportunity to meet with other parents, and the programme seemed acceptable to the majority of parents who attended. En ligne : http://dx.doi.org/10.1177/1362361313495718 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=237
in Autism > 18-6 (August 2014) . - p.651-657[article] Parents’ views of the National Autistic Society’s EarlyBird Plus Programme [Texte imprimé et/ou numérique] / Anna L. CUTRESS, Auteur ; Steven J. MUNCER, Auteur . - p.651-657.
Langues : Anglais (eng)
in Autism > 18-6 (August 2014) . - p.651-657
Mots-clés : autism EarlyBird Plus parent training programme post-diagnostic support psychoeducation Index. décimale : PER Périodiques Résumé : Parent training interventions are recommended for parents soon after their child’s autism spectrum condition diagnosis with the aim of improving parents’ psychological well-being and coping, as well as the child’s behaviour. This report explores parents’ views of the EarlyBird Plus Programme through data collected routinely in the post-programme questionnaire. Participants’ reported increased understanding of autism and improvements in their communication with their child and their ability to manage their child’s behaviour. Parents appeared to value the opportunity to meet with other parents, and the programme seemed acceptable to the majority of parents who attended. En ligne : http://dx.doi.org/10.1177/1362361313495718 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=237 Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme / Laura CRANE in Journal of Autism and Developmental Disorders, 51-3 (March 2021)
[article]
Titre : Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme Type de document : Texte imprimé et/ou numérique Auteurs : Laura CRANE, Auteur ; Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur ; Elisabeth L HILL, Auteur Article en page(s) : p.892-905 Langues : Anglais (eng) Mots-clés : Adults Autism Autistic-led Diagnosis Peer support Post-diagnostic support Index. décimale : PER Périodiques Résumé : Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic. En ligne : http://dx.doi.org/10.1007/s10803-020-04486-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=443
in Journal of Autism and Developmental Disorders > 51-3 (March 2021) . - p.892-905[article] Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme [Texte imprimé et/ou numérique] / Laura CRANE, Auteur ; Caroline HEARST, Auteur ; Maria ASHWORTH, Auteur ; Jade DAVIES, Auteur ; Elisabeth L HILL, Auteur . - p.892-905.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 51-3 (March 2021) . - p.892-905
Mots-clés : Adults Autism Autistic-led Diagnosis Peer support Post-diagnostic support Index. décimale : PER Périodiques Résumé : Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic. En ligne : http://dx.doi.org/10.1007/s10803-020-04486-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=443