Acceptability and Implementation of a Primary Care Health Check for Autistic People: Findings From Evaluation Questionnaires and Interviews / Hannah MERRICK in Autism, 30-8 (August 2026)  

Public ISBD [article]  inAutism > 30-8 (August 2026) . - p.1955-1970 Titre : Acceptability and Implementation of a Primary Care Health Check for Autistic People: Findings From Evaluation Questionnaires and Interviews Type de document : texte imprimé Auteurs : Hannah MERRICK, Auteur ; Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; Tracy FINCH, Auteur ; Sarah AL-ASHMORI, Auteur ; Ruby HERRINGTON, Auteur ; Clare SCARLETT, Auteur ; Carole BUCKLEY, Auteur ; Sally-Ann COOPER, Auteur ; Cristina FERNANDEZ-GARCIA, Auteur ; Shona HAINING, Auteur ; Rhianna LEES, Auteur ; Nicholas LENNOX, Auteur ; Sebastian MOSS, Auteur ; Tim NICHOLLS, Auteur ; Christina NICOLAIDIS, Auteur ; Malcolm OSBORNE, Auteur ; Dora M. RAYMAKER, Auteur ; Tomos ROBINSON, Auteur ; Anna URBANOWICZ, Auteur ; James M.S. WASON, Auteur ; Colin WILSON, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.1955-1970 Langues : Anglais (eng) Mots-clés : acceptability  autism  health checks  implementation  primary care Index. décimale : PER Périodiques Résumé : Autistic people experience higher rates of physical and mental health conditions and face barriers to accessing healthcare. This study evaluated the acceptability and implementation of a co-designed primary care health check for autistic people (18 years+), delivered within a randomised controlled trial in Northern England investigating clinical and cost-effectiveness. Following health checks, all autistic people, carers/supporters, and clinicians were invited to complete evaluation questionnaires and a subset invited for an interview. Eighty-one autistic people, 11 carers/supporters, and 18 clinicians returned questionnaires and were descriptively analysed; 44 participants were interviewed. Findings demonstrated that the pre-appointment questionnaire and health check appointment were reported to be acceptable, valued and beneficial by all groups. Carers/supporters reported positive impacts of their role in reducing anxiety and supporting communication. Interview analysis, informed by Normalisation Process Theory, highlighted important factors to consider for implementation of the health check at scale. This included the importance of providing clear guidance and resources ahead of the health check and ensuring enough funding and capacity in primary care. Health checks can be delivered to autistic people in local neighbourhoods to address heath inequalities. Health checks require adequate resources, staff training, and integration into care systems to ensure successful implementation and sustainability.Lay Abstract Improving healthcare for autistic people: a study of a new primary care health checkAutistic people often face more health problems and shorter average life expectancy compared to non-autistic people. They can also find it harder to access healthcare that meets their needs. To help with this, researchers developed a new health check specifically for autistic people to be used in general practice settings. This health check included a pre-appointment questionnaire to help prepare for the visit and a longer appointment with a trained clinician. This study looked at how acceptable the health check was for autistic people, their carers/supporters, and clinicians, and what factors will help it work well in practice. It used questionnaires and interviews to collect views from autistic people who received the health check, clinicians who delivered it, and carers/supporters who attended the appointment. Most autistic people thought the health check was helpful and they would attend one again. The pre-appointment questionnaire helped people share important information, although some found it difficult to complete and some people needed support to complete it. Carers/supporters also found the process helpful in supporting the autistic adult and improving communication. Clinicians said they were able to put adjustments in place, use the clinician health check template, and found the extra time and structure the health check provided useful. However, they mentioned needing more resources and support to make it work in everyday practice. The interviews showed that autistic people, carers/supporters, and clinicians thought the health check is a good idea and should be offered more widely. It is important to make sure autistic people understand what to expect from the health check and that they can ask for adjustments to meet their needs. For the health check to work well long term, general practice settings will need funding, staff training in autism awareness, and clear systems for delivering the health checks. En ligne : https://dx.doi.org/10.1177/13623613261433106 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590 [article] Acceptability and Implementation of a Primary Care Health Check for Autistic People: Findings From Evaluation Questionnaires and Interviews [texte imprimé] / Hannah MERRICK, Auteur ; Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; Tracy FINCH, Auteur ; Sarah AL-ASHMORI, Auteur ; Ruby HERRINGTON, Auteur ; Clare SCARLETT, Auteur ; Carole BUCKLEY, Auteur ; Sally-Ann COOPER, Auteur ; Cristina FERNANDEZ-GARCIA, Auteur ; Shona HAINING, Auteur ; Rhianna LEES, Auteur ; Nicholas LENNOX, Auteur ; Sebastian MOSS, Auteur ; Tim NICHOLLS, Auteur ; Christina NICOLAIDIS, Auteur ; Malcolm OSBORNE, Auteur ; Dora M. RAYMAKER, Auteur ; Tomos ROBINSON, Auteur ; Anna URBANOWICZ, Auteur ; James M.S. WASON, Auteur ; Colin WILSON, Auteur ; Jeremy R. PARR, Auteur . - p.1955-1970. Langues : Anglais (eng) in Autism > 30-8 (August 2026) . - p.1955-1970 Mots-clés : acceptability  autism  health checks  implementation  primary care Index. décimale : PER Périodiques Résumé : Autistic people experience higher rates of physical and mental health conditions and face barriers to accessing healthcare. This study evaluated the acceptability and implementation of a co-designed primary care health check for autistic people (18 years+), delivered within a randomised controlled trial in Northern England investigating clinical and cost-effectiveness. Following health checks, all autistic people, carers/supporters, and clinicians were invited to complete evaluation questionnaires and a subset invited for an interview. Eighty-one autistic people, 11 carers/supporters, and 18 clinicians returned questionnaires and were descriptively analysed; 44 participants were interviewed. Findings demonstrated that the pre-appointment questionnaire and health check appointment were reported to be acceptable, valued and beneficial by all groups. Carers/supporters reported positive impacts of their role in reducing anxiety and supporting communication. Interview analysis, informed by Normalisation Process Theory, highlighted important factors to consider for implementation of the health check at scale. This included the importance of providing clear guidance and resources ahead of the health check and ensuring enough funding and capacity in primary care. Health checks can be delivered to autistic people in local neighbourhoods to address heath inequalities. Health checks require adequate resources, staff training, and integration into care systems to ensure successful implementation and sustainability.Lay Abstract Improving healthcare for autistic people: a study of a new primary care health checkAutistic people often face more health problems and shorter average life expectancy compared to non-autistic people. They can also find it harder to access healthcare that meets their needs. To help with this, researchers developed a new health check specifically for autistic people to be used in general practice settings. This health check included a pre-appointment questionnaire to help prepare for the visit and a longer appointment with a trained clinician. This study looked at how acceptable the health check was for autistic people, their carers/supporters, and clinicians, and what factors will help it work well in practice. It used questionnaires and interviews to collect views from autistic people who received the health check, clinicians who delivered it, and carers/supporters who attended the appointment. Most autistic people thought the health check was helpful and they would attend one again. The pre-appointment questionnaire helped people share important information, although some found it difficult to complete and some people needed support to complete it. Carers/supporters also found the process helpful in supporting the autistic adult and improving communication. Clinicians said they were able to put adjustments in place, use the clinician health check template, and found the extra time and structure the health check provided useful. However, they mentioned needing more resources and support to make it work in everyday practice. The interviews showed that autistic people, carers/supporters, and clinicians thought the health check is a good idea and should be offered more widely. It is important to make sure autistic people understand what to expect from the health check and that they can ask for adjustments to meet their needs. For the health check to work well long term, general practice settings will need funding, staff training in autism awareness, and clear systems for delivering the health checks. En ligne : https://dx.doi.org/10.1177/13623613261433106 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590

Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults / R. HERREMA in Journal of Autism and Developmental Disorders, 47-11 (November 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3659-3668 Titre : Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults Type de document : texte imprimé Auteurs : R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.3659-3668 Langues : Anglais (eng) Mots-clés : Adults  Autism  Family members  Future  Support  Worry Index. décimale : PER Périodiques Résumé : Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future. En ligne : http://dx.doi.org/10.1007/s10803-017-3254-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325 [article] Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults [texte imprimé] / R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur . - p.3659-3668. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3659-3668 Mots-clés : Adults  Autism  Family members  Future  Support  Worry Index. décimale : PER Périodiques Résumé : Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future. En ligne : http://dx.doi.org/10.1007/s10803-017-3254-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325

Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families / Jane GOODWIN in Autism, 26-4 (May 2022)  

Public ISBD [article]  inAutism > 26-4 (May 2022) . - p.827-838 Titre : Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families Type de document : texte imprimé Auteurs : Jane GOODWIN, Auteur ; Priyanka ROB, Auteur ; Mark FREESTON, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Catharine WRIGHT, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.827-838 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Caregivers  Child  Humans  Parents  Quality of Life  Uncertainty  anxiety  intolerance of uncertainty  potential conflicts of interest with respect to the research, authorship and/or  publication of this article: Professor J.R., Dr C.W. and Professor M.F. developed  the Coping with Uncertainty in Everyday Situations (CUES(©)) Programme. Data  presented in this article were collected as part of a CUES(©) feasibility and  acceptability study. Professor M.F. declares receiving royalties for books and  honoraria for training in related areas addressing anxiety in neurotypical  populations. Index. décimale : PER Périodiques Résumé : Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child's reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children's ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613211033757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473 [article] Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families [texte imprimé] / Jane GOODWIN, Auteur ; Priyanka ROB, Auteur ; Mark FREESTON, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Catharine WRIGHT, Auteur ; Jacqui RODGERS, Auteur . - p.827-838. Langues : Anglais (eng) in Autism > 26-4 (May 2022) . - p.827-838 Mots-clés : Autism Spectrum Disorder  Autistic Disorder  Caregivers  Child  Humans  Parents  Quality of Life  Uncertainty  anxiety  intolerance of uncertainty  potential conflicts of interest with respect to the research, authorship and/or  publication of this article: Professor J.R., Dr C.W. and Professor M.F. developed  the Coping with Uncertainty in Everyday Situations (CUES(©)) Programme. Data  presented in this article were collected as part of a CUES(©) feasibility and  acceptability study. Professor M.F. declares receiving royalties for books and  honoraria for training in related areas addressing anxiety in neurotypical  populations. Index. décimale : PER Périodiques Résumé : Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child's reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children's ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families. En ligne : https://dx.doi.org/10.1177/13623613211033757 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=473

Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial / Jacqui RODGERS in Journal of Autism and Developmental Disorders, 53-9 (September 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-9 (September 2023) . - p.3460-3474 Titre : Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial Type de document : texte imprimé Auteurs : Jacqui RODGERS, Auteur ; Jane GOODWIN, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Lucy ISARD, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Priyanka ROB, Auteur ; Catharine WRIGHT, Auteur ; Mark FREESTON, Auteur Article en page(s) : p.3460-3474 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Anxiety related to uncertainty is common in autism. Coping with Uncertainty in Everyday Situations (CUES©) is a parent-mediated group intervention aiming to increase autistic children s tolerance to uncertain situations. A pilot study was conducted to test its feasibility and acceptability. En ligne : https://doi.org/10.1007/s10803-022-05645-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511 [article] Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial [texte imprimé] / Jacqui RODGERS, Auteur ; Jane GOODWIN, Auteur ; Deborah GARLAND, Auteur ; Victoria GRAHAME, Auteur ; Lucy ISARD, Auteur ; Ashleigh KERNOHAN, Auteur ; Marie LABUS, Auteur ; Malcolm OSBORNE, Auteur ; Jeremy R. PARR, Auteur ; Priyanka ROB, Auteur ; Catharine WRIGHT, Auteur ; Mark FREESTON, Auteur . - p.3460-3474. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-9 (September 2023) . - p.3460-3474 Index. décimale : PER Périodiques Résumé : Anxiety related to uncertainty is common in autism. Coping with Uncertainty in Everyday Situations (CUES©) is a parent-mediated group intervention aiming to increase autistic children s tolerance to uncertain situations. A pilot study was conducted to test its feasibility and acceptability. En ligne : https://doi.org/10.1007/s10803-022-05645-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=511

Mental Wellbeing of Family Members of Autistic Adults / R. HERREMA in Journal of Autism and Developmental Disorders, 47-11 (November 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3589-3599 Titre : Mental Wellbeing of Family Members of Autistic Adults Type de document : texte imprimé Auteurs : R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur Article en page(s) : p.3589-3599 Langues : Anglais (eng) Mots-clés : Adults  Autism  Family members  Mental health  Wellbeing Index. décimale : PER Périodiques Résumé : Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer. En ligne : http://dx.doi.org/10.1007/s10803-017-3269-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325 [article] Mental Wellbeing of Family Members of Autistic Adults [texte imprimé] / R. HERREMA, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBORNE, Auteur ; Mark FREESTON, Auteur ; Emma HONEY, Auteur ; Jacqui RODGERS, Auteur . - p.3589-3599. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-11 (November 2017) . - p.3589-3599 Mots-clés : Adults  Autism  Family members  Mental health  Wellbeing Index. décimale : PER Périodiques Résumé : Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer. En ligne : http://dx.doi.org/10.1007/s10803-017-3269-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=325

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