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

'It seems like a luxury to be able to offer that': Factors influencing the implementation of annual health checks for autistic people in England / Jade DAVIES in Autism, 28-3 (March 2024)  

Public ISBD [article]  inAutism > 28-3 (March 2024) . - p.656-673 Titre : 'It seems like a luxury to be able to offer that': Factors influencing the implementation of annual health checks for autistic people in England Type de document : Texte imprimé et/ou numérique Auteurs : Jade DAVIES, Auteur ; Anna REMINGTON, Auteur ; Carole BUCKLEY, Auteur ; Laura CRANE, Auteur ; Katelyn SMALLEY, Auteur Article en page(s) : p.656-673 Langues : Anglais (eng) Mots-clés : autism  behavioural science  health checks  healthcare  policy  preventive care Index. décimale : PER Périodiques Résumé : Autistic people in England face worse health outcomes than non-autistic people. Autism-specific annual health checks have been proposed as one solution to this issue. This study identified strategies to incentivise primary care providers to offer autism-specific annual health checks, using a behavioural science approach. In phase 1, we conducted interviews and focus groups with autistic people (n = 10) and primary care providers (n = 11). In phase 2, we conducted a national survey of primary care providers (n = 196). Qualitative data were analysed using a framework method and the Theoretical Domains Framework. Quantitative data were analysed descriptively, and comparisons between sub-groups of survey respondents were made using Mann-Whitney U and Kruskal-Wallis tests. The most salient theoretical domain was environmental context and resources. Participants identified lack of time and staff as key barriers to implementation. Delegating tasks to non-physician practitioners and automating processes were seen as key facilitators. Autism-specific knowledge was another relevant domain; education produced and delivered by autistic people was posited to increase health check uptake and quality. Overall, participants were enthusiastic about autism-specific annual health checks but were concerned about the practical aspects of implementation. We identified specific barriers and facilitators that can be addressed prior to policy adoption to maximise chances of success. Lay abstract Autistic people are more likely to have mental and physical health problems than non-autistic people. Annual health checks could reduce these problems by finding and treating them early. Annual health checks are yearly medical appointments where a primary healthcare provider (such as a doctor or nurse) can check things like a patient?s weight and heart rate and ask if they have any worries about their health. In this study, we wanted to understand what might encourage primary healthcare providers to use annual health checks with their autistic patients. First, we spoke to 10 autistic people and 11 primary healthcare providers. Using the findings from these conversations, we created an online survey for primary healthcare providers in England. We used the findings from the interviews and survey to help us understand what would encourage primary healthcare providers to offer annual health checks for autistic people. Our participants said that a lack of time and staff would make it hard to provide health checks. To help, they said other members of staff (such as nurses and healthcare assistants) could do the health checks, rather than doctors. They also said parts of the process could be made automatic to save time (e.g. sending automatic reminders). Knowledge about autism was important too (e.g. knowing about the common conditions autistic people have, and how to best support autistic patients). Participants said training on these topics, produced and delivered with autistic people, could encourage them to use annual health checks with their autistic patients. En ligne : https://dx.doi.org/10.1177/13623613231182011 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523 [article] 'It seems like a luxury to be able to offer that': Factors influencing the implementation of annual health checks for autistic people in England [Texte imprimé et/ou numérique] / Jade DAVIES, Auteur ; Anna REMINGTON, Auteur ; Carole BUCKLEY, Auteur ; Laura CRANE, Auteur ; Katelyn SMALLEY, Auteur . - p.656-673. Langues : Anglais (eng) in Autism > 28-3 (March 2024) . - p.656-673 Mots-clés : autism  behavioural science  health checks  healthcare  policy  preventive care Index. décimale : PER Périodiques Résumé : Autistic people in England face worse health outcomes than non-autistic people. Autism-specific annual health checks have been proposed as one solution to this issue. This study identified strategies to incentivise primary care providers to offer autism-specific annual health checks, using a behavioural science approach. In phase 1, we conducted interviews and focus groups with autistic people (n = 10) and primary care providers (n = 11). In phase 2, we conducted a national survey of primary care providers (n = 196). Qualitative data were analysed using a framework method and the Theoretical Domains Framework. Quantitative data were analysed descriptively, and comparisons between sub-groups of survey respondents were made using Mann-Whitney U and Kruskal-Wallis tests. The most salient theoretical domain was environmental context and resources. Participants identified lack of time and staff as key barriers to implementation. Delegating tasks to non-physician practitioners and automating processes were seen as key facilitators. Autism-specific knowledge was another relevant domain; education produced and delivered by autistic people was posited to increase health check uptake and quality. Overall, participants were enthusiastic about autism-specific annual health checks but were concerned about the practical aspects of implementation. We identified specific barriers and facilitators that can be addressed prior to policy adoption to maximise chances of success. Lay abstract Autistic people are more likely to have mental and physical health problems than non-autistic people. Annual health checks could reduce these problems by finding and treating them early. Annual health checks are yearly medical appointments where a primary healthcare provider (such as a doctor or nurse) can check things like a patient?s weight and heart rate and ask if they have any worries about their health. In this study, we wanted to understand what might encourage primary healthcare providers to use annual health checks with their autistic patients. First, we spoke to 10 autistic people and 11 primary healthcare providers. Using the findings from these conversations, we created an online survey for primary healthcare providers in England. We used the findings from the interviews and survey to help us understand what would encourage primary healthcare providers to offer annual health checks for autistic people. Our participants said that a lack of time and staff would make it hard to provide health checks. To help, they said other members of staff (such as nurses and healthcare assistants) could do the health checks, rather than doctors. They also said parts of the process could be made automatic to save time (e.g. sending automatic reminders). Knowledge about autism was important too (e.g. knowing about the common conditions autistic people have, and how to best support autistic patients). Participants said training on these topics, produced and delivered with autistic people, could encourage them to use annual health checks with their autistic patients. En ligne : https://dx.doi.org/10.1177/13623613231182011 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=523

Which terms should be used to describe autism? Perspectives from the UK autism community / Lorcan KENNY in Autism, 20-4 (May 2016)  

Public ISBD [article]  inAutism > 20-4 (May 2016) . - p.442-462 Titre : Which terms should be used to describe autism? Perspectives from the UK autism community Type de document : Texte imprimé et/ou numérique Auteurs : Lorcan KENNY, Auteur ; Caroline HATTERSLEY, Auteur ; Bonnie MOLINS, Auteur ; Carole BUCKLEY, Auteur ; Carol POVEY, Auteur ; Elizabeth PELLICANO, Auteur Article en page(s) : p.442-462 Langues : Anglais (eng) Mots-clés : autism  terminology  disability  neurodiversity  quality of life Index. décimale : PER Périodiques Résumé : Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members – autistic people, parents and their broader support network – about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents’ preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community and that some disagreements appear deeply entrenched. En ligne : http://dx.doi.org/10.1177/1362361315588200 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=287 [article] Which terms should be used to describe autism? Perspectives from the UK autism community [Texte imprimé et/ou numérique] / Lorcan KENNY, Auteur ; Caroline HATTERSLEY, Auteur ; Bonnie MOLINS, Auteur ; Carole BUCKLEY, Auteur ; Carol POVEY, Auteur ; Elizabeth PELLICANO, Auteur . - p.442-462. Langues : Anglais (eng) in Autism > 20-4 (May 2016) . - p.442-462 Mots-clés : autism  terminology  disability  neurodiversity  quality of life Index. décimale : PER Périodiques Résumé : Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members – autistic people, parents and their broader support network – about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents’ preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community and that some disagreements appear deeply entrenched. En ligne : http://dx.doi.org/10.1177/1362361315588200 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=287

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