Co-design of an NHS primary care health check for autistic adults / Helen TAYLOR in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1079-1091 Titre : Co-design of an NHS primary care health check for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur Article en page(s) : p.1079-1091 Langues : Anglais (eng) Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Co-design of an NHS primary care health check for autistic adults [Texte imprimé et/ou numérique] / Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur . - p.1079-1091. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1079-1091 Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

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)  

Public ISBD [article]  inAutism > 27-2 (February 2023) . - p.344-355 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 [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

How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians / David MASON in Autism, 25-3 (April 2021)  

Public ISBD [article]  inAutism > 25-3 (April 2021) . - p.774-785 Titre : How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians Type de document : Texte imprimé et/ou numérique Auteurs : David MASON, Auteur ; Barry INGHAM, Auteur ; Heather BIRTLES, Auteur ; Cos MICHAEL, Auteur ; Clare SCARLETT, Auteur ; Ian A. JAMES, Auteur ; Toni BROWN, Auteur ; Marc WOODBURY-SMITH, Auteur ; Colin WILSON, Auteur ; Tracy FINCH, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.774-785 Langues : Anglais (eng) Mots-clés : barriers to healthcare  health services  qualitative research Index. décimale : PER Périodiques Résumé : Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets. En ligne : http://dx.doi.org/10.1177/1362361321993709 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians [Texte imprimé et/ou numérique] / David MASON, Auteur ; Barry INGHAM, Auteur ; Heather BIRTLES, Auteur ; Cos MICHAEL, Auteur ; Clare SCARLETT, Auteur ; Ian A. JAMES, Auteur ; Toni BROWN, Auteur ; Marc WOODBURY-SMITH, Auteur ; Colin WILSON, Auteur ; Tracy FINCH, Auteur ; Jeremy R. PARR, Auteur . - p.774-785. Langues : Anglais (eng) in Autism > 25-3 (April 2021) . - p.774-785 Mots-clés : barriers to healthcare  health services  qualitative research Index. décimale : PER Périodiques Résumé : Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets. En ligne : http://dx.doi.org/10.1177/1362361321993709 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

A Pilot Randomised Control Trial Exploring the Feasibility and Acceptability of Delivering a Personalised Modular Psychological Intervention for Anxiety Experienced by Autistic Adults: Personalised Anxiety Treatment-Autism (PAT-A) / Jacqui RODGERS in Journal of Autism and Developmental Disorders, 54-11 (November)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-11 (November) . - p.4045-4060 Titre : A Pilot Randomised Control Trial Exploring the Feasibility and Acceptability of Delivering a Personalised Modular Psychological Intervention for Anxiety Experienced by Autistic Adults: Personalised Anxiety Treatment-Autism (PAT-A) Type de document : Texte imprimé et/ou numérique Auteurs : Jacqui RODGERS, Auteur ; Samuel BRICE, Auteur ; Patrick WELSH, Auteur ; Barry INGHAM, Auteur ; Colin WILSON, Auteur ; Gemma EVANS, Auteur ; Katie STEELE, Auteur ; Emily CROPPER, Auteur ; Ann LE COUTEUR, Auteur ; Mark FREESTON, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.4045-4060 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Anxiety is commonly experienced by autistic people and impacts on quality of life and social participation. New anxiety interventions are required to effectively meet the needs of autistic people. Personalised Anxiety Treatment-Autism (PAT-A©) is a bespoke, modular approach to treating anxiety in up to 12 sessions. This study explored the feasibility and acceptability of delivering PAT-A© in the UK National Health Service (NHS). A single-blind randomised controlled trial design. Thirty-four autistic adults were recruited via clinical services and randomised to receive either PAT-A© or enhanced treatment as usual (CCSP). Outcome assessments relating to anxiety, quality of life and related constructs were completed at baseline, immediately post intervention; and at 3 and 12 months. Seventy-one percent of the PAT-A© group and 65% of the CCSP met diagnostic threshold for at least three anxiety disorders. Retention was good across both groups, with 82% (N = 14/17) completing the full course of PAT-A© and 71% (N = 12/17) attending both psychoeducational sessions in CCSP. 94% in PAT-A© and 82% in CCSP completed some follow up assessment 3 months post-intervention. Thematic analysis of interview data revealed that many participants valued the personalised approach, developed transferable skills and experienced positive changes to their anxiety. Participants were willing to be recruited and randomised, PAT-A© was feasible to deliver in the NHS and the trial methods and materials were acceptable. Our findings indicate that a fully powered clinical and cost-effectiveness trial of PAT-A© is warranted. En ligne : https://doi.org/10.1007/s10803-023-06112-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=536 [article] A Pilot Randomised Control Trial Exploring the Feasibility and Acceptability of Delivering a Personalised Modular Psychological Intervention for Anxiety Experienced by Autistic Adults: Personalised Anxiety Treatment-Autism (PAT-A) [Texte imprimé et/ou numérique] / Jacqui RODGERS, Auteur ; Samuel BRICE, Auteur ; Patrick WELSH, Auteur ; Barry INGHAM, Auteur ; Colin WILSON, Auteur ; Gemma EVANS, Auteur ; Katie STEELE, Auteur ; Emily CROPPER, Auteur ; Ann LE COUTEUR, Auteur ; Mark FREESTON, Auteur ; Jeremy R. PARR, Auteur . - p.4045-4060. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-11 (November) . - p.4045-4060 Index. décimale : PER Périodiques Résumé : Anxiety is commonly experienced by autistic people and impacts on quality of life and social participation. New anxiety interventions are required to effectively meet the needs of autistic people. Personalised Anxiety Treatment-Autism (PAT-A©) is a bespoke, modular approach to treating anxiety in up to 12 sessions. This study explored the feasibility and acceptability of delivering PAT-A© in the UK National Health Service (NHS). A single-blind randomised controlled trial design. Thirty-four autistic adults were recruited via clinical services and randomised to receive either PAT-A© or enhanced treatment as usual (CCSP). Outcome assessments relating to anxiety, quality of life and related constructs were completed at baseline, immediately post intervention; and at 3 and 12 months. Seventy-one percent of the PAT-A© group and 65% of the CCSP met diagnostic threshold for at least three anxiety disorders. Retention was good across both groups, with 82% (N = 14/17) completing the full course of PAT-A© and 71% (N = 12/17) attending both psychoeducational sessions in CCSP. 94% in PAT-A© and 82% in CCSP completed some follow up assessment 3 months post-intervention. Thematic analysis of interview data revealed that many participants valued the personalised approach, developed transferable skills and experienced positive changes to their anxiety. Participants were willing to be recruited and randomised, PAT-A© was feasible to deliver in the NHS and the trial methods and materials were acceptable. Our findings indicate that a fully powered clinical and cost-effectiveness trial of PAT-A© is warranted. En ligne : https://doi.org/10.1007/s10803-023-06112-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=536

A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults / Sarah WIGHAM in Autism, 26-8 (November 2022)  

Public ISBD [article]  inAutism > 26-8 (November 2022) . - p.1959-1972 Titre : A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults 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.1959-1972 Langues : Anglais (eng) Mots-clés : Adult  Humans  Autistic Disorder/diagnosis/psychology  Autism Spectrum Disorder/diagnosis/psychology  Surveys and Questionnaires  United Kingdom  NICE guidance  adults  assessment pathway  autism spectrum disorders  diagnosis  stakeholders  research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people's experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide. En ligne : http://dx.doi.org/10.1177/13623613211073020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488 [article] A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults [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.1959-1972. Langues : Anglais (eng) in Autism > 26-8 (November 2022) . - p.1959-1972 Mots-clés : Adult  Humans  Autistic Disorder/diagnosis/psychology  Autism Spectrum Disorder/diagnosis/psychology  Surveys and Questionnaires  United Kingdom  NICE guidance  adults  assessment pathway  autism spectrum disorders  diagnosis  stakeholders  research, authorship, and/or publication of this article. Index. décimale : PER Périodiques Résumé : Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people's experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide. En ligne : http://dx.doi.org/10.1177/13623613211073020 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488

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