Comment les systèmes de santé sont vécus par les adultes autistes au Royaume-Uni : une méta-ethnographie

Ajouté le 28/07/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Sarah Radev*, Megan Freeth, Andrew Thompson , How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography publié dans la revue "Autism", Preprint, 13 pages , doi:10.1177/13623613241235531

*Un·e co-auteur·rice est autiste. [En savoir plus sur cette mention]

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Les adultes autistes sont plus susceptibles de connaître des problèmes de santé mentale et physique, et pourtant, ils peuvent avoir du mal à obtenir le soutien dont ils ont besoin. Une approche méta-ethnographique a été utilisée pour examiner les recherches existantes sur les expériences des adultes autistes en matière d'accès aux soins de santé. Quatre bases de données ont été consultées pour trouver des études qualitatives et à méthodes mixtes qui examinaient les expériences des adultes autistes et qui n'avaient pas de troubles d'apprentissage lors de l'utilisation des services de santé au Royaume-Uni. Quinze articles répondaient aux critères d'inclusion et sept étapes ont été utilisées pour analyser les informations et développer de nouveaux thèmes. Trois thèmes principaux ont été identifiés : le manque de connaissances des professionnels peut être préjudiciable, la nécessité de réduire les exigences de traitement et l'adaptation pour améliorer l'engagement. Cette revue met en évidence l'impact néfaste que peuvent avoir sur le bien-être des adultes autistes les mauvais diagnostics, les traitements inappropriés, les environnements écrasants et les systèmes difficiles d'accès. Les connaissances et la compréhension limitées des professionnels de la santé en matière d'autisme ainsi que les différences de communication et sensorielles des adultes autistes eux-mêmes indiquent qu'il est nécessaire d'améliorer la formation développée avec les adultes autistes et les adaptations.

Autistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults' experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals' lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult's own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations.

Pour information:

(1) les références en bleu sont des ressources référencées sur notre site;

(2) les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la listes des ressources publiées et partagées sur le site;

(3) les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes. [En savoir plus sur cette mention]

  • D. Ali, S. O’Brien, L. Hull, L. Kenny, W. Mandy (2023). "'The key to this is not so much the technology. It's the individual who is using the technology': Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic". Autism, 27(2). doi:10.1177/13623613221108010

  • A. Psychiatric Association (2013). "Diagnostic and Statistical Manual of Mental Disorders".

  • S. Au-Yeung, L. Bradley, A. Robertson, R. Shaw, S. Baron-Cohen, S. Cassidy (2019). "Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults". Autism, 23(6). doi:10.1177/1362361318818167

  • C. Babb, J. Brede, C. Jones, M. Elliott, C. Zanker, K. Tchanturia, L. Serpell, W. Mandy, J. Fox (2021). "'It's not that they don't want to access the support . . . it's the impact of the autism': The experience of eating disorder services from the perspective of autistic women, parents and healthcare professionals". Autism. doi:10.1177/1362361321991257

  • P. Bradshaw, E. Pellicano, M. van Driel, A. Urbanowicz (2019). "How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability?". Curr Dev Disord Rep, 6(2). doi:10.1007/s40474-019-00159-9

  • J. Brede, E. Cage, J. Trott, L. Palmer, A. Smith, L. Serpell, W. Mandy, A. Russell (2022). "'We Have to Try to Find a Way, a Clinical Bridge' - autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis". Clinical Psychology Review, 93. doi:10.1016/j.cpr.2022.102131

  • S. Brice, J. Rodgers, B. Ingham, D. Mason, C. Wilson, M. Freeston, A. Le Couteur, J. Parr (2021). "The importance and availability of adjustments to improve access for autistic adults who need mental and physical healthcare: findings from UK surveys". BMJ Open, 11(3). doi:10.1136/bmjopen-2020-043336

  • N. Britten, R. Campbell, C. Pope, J. Donovan, M. Morgan, R. Pill (2002). "Using meta ethnography to synthesise qualitative research: a worked example". J Health Serv Res Policy, 7(4). doi:10.1258/135581902320432732

  • H. Bruce, K. Munday, S. Kapp* (2023). "Exploring the Experiences of Autistic Transgender and Non-Binary Adults in Seeking Gender Identity Health Care". Autism in Adulthood, 5(2). doi:10.1089/aut.2023.0003

  • T. Buck, J. Viskochil, M. Farley, H. Coon, W. McMahon, J. Morgan, D. Bilder (2014). "Psychiatric Comorbidity and Medication Use in Adults with Autism Spectrum Disorder". J Autism Dev Disord, 44(12). doi:10.1007/s10803-014-2170-2

  • M. Caamaño, L. Boada, J. Merchán-Naranjo, C. Moreno, C. Llorente, D. Moreno, C. Arango, M. Parellada (2013). "Psychopathology in Children and Adolescents with ASD Without Mental Retardation". J Autism Dev Disord, 43(10). doi:10.1007/s10803-013-1792-0

  • S. Calleja, F. Amirul Islam, J. Kingsley, R. McDonald (2020). "Healthcare access for autistic adults". Medicine, 99(29). doi:10.1097/md.0000000000020899

  • L. Camm-Crosbie, L. Bradley, R. Shaw, S. Baron-Cohen, S. Cassidy (2019). "'People like me don't get support': Autistic adults' experiences of support and treatment for mental health difficulties, self-injury and suicidality". Autism, 23(6). doi:10.1177/1362361318816053

  • CASP Qualitative Checklist. (2018). "Critical Appraisal Skills Programme". (Source)

  • L. Crane, R. Batty, H. Adeyinka, L. Goddard, L. Henry, E. Hill (2018). "Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals". J Autism Dev Disord, 48(11). doi:10.1007/s10803-018-3639-1

  • Department of Education, & Department of Health and Social Care. (2021). "Summary of findings from the government's review of the National Autism Strategy 'Think Autism' call for evidence. Gov.Uk. (Source)

  • E. France, M. Cunningham, N. Ring, I. Uny, E. AS Duncan, R. Jepson, M. Maxwell, R. Roberts, R. Turley, A. Booth, N. Britten, K. Flemming, I. Gallagher, R. Garside, K. Hannes, S. Lewin, G. Noblit, C. Pope, J. Thomas, M. Vanstone, G. Higginbottom, J. Noyes (2019). "Improving reporting of meta‐ethnography: The eMERGe reporting guidance". Journal of Advanced Nursing, 75(5). doi:10.1111/jan.13809

  • D. Gilmore, M. Krantz, L. Weaver, B. Hand (2022). "Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis". Autism, 26(2). doi:10.1177/13623613211060906

  • G. Griffith, V. Totsika, S. Nash, R. Hastings (2012). "'I just don't fit anywhere': support experiences and future support needs of individuals with Asperger syndrome in middle adulthood". Autism, 16(5). doi:10.1177/1362361311405223

  • S. Griffiths, C. Allison, R. Kenny, R. Holt, P. Smith, S. Baron‐Cohen (2019). "The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults". Autism Research, 12(10). doi:10.1002/aur.2162

  • M. Harmens, F. Sedgewick, H. Hobson (2022). "Autistic women's diagnostic experiences: Interactions with identity and impacts on well-being". Womens Health (Lond Engl), 18. doi:10.1177/17455057221137477

  • L. Jones, L. Goddard, E. Hill, L. Henry, L. Crane (2014). "Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom". J Autism Dev Disord, 44(12). doi:10.1007/s10803-014-2161-3

  • D. Mason, B. Ingham, H. Birtles, C. Michael, C. Scarlett, I. James, T. Brown, M. Woodbury-Smith, C. Wilson, T. Finch, J. Parr (2021). "How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians". Autism, 25(3). doi:10.1177/1362361321993709

  • D. Mason, B. Ingham, A. Urbanowicz, C. Michael, H. Birtles, M. Woodbury-Smith, T. Brown, I. James, C. Scarlett, C. Nicolaidis, J. Parr (2019). "A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults". J Autism Dev Disord, 49(8). doi:10.1007/s10803-019-04049-2

  • A. McMillion, J. Van Herwegen, A. Johnson, J. Monteiro, A. Cronin, A. Remington (2021). "Dental experiences of a group of autistic adults based in the United Kingdom". Special Care in Dentistry, 41(4). doi:10.1111/scd.12583

  • C. Nicolaidis, D. Raymaker*, E. Ashkenazy, K. McDonald, S. Dern, A. EV Baggs, S. Kapp*, M. Weiner, W. Cody Boisclair (2015). "'Respect the way I need to communicate with you': Healthcare experiences of adults on the autism spectrum". Autism, 19(7). doi:10.1177/1362361315576221

  • G. Noblit, R. Hare (1988). "Meta-ethnography: Synthesizing qualitative studies". Sage.

  • M. Ouzzani, H. Hammady, Z. Fedorowicz, A. Elmagarmid (2016). "Rayyan—a web and mobile app for systematic reviews". Syst Rev, 5(1). doi:10.1186/s13643-016-0384-4

  • M. Page, J. McKenzie, P. Bossuyt, I. Boutron, T. Hoffmann, C. Mulrow, L. Shamseer, J. Tetzlaff, E. Akl, S. Brennan, R. Chou, J. Glanville, J. Grimshaw, A. Hróbjartsson, M. Lalu, T. Li, E. Loder, E. Mayo-Wilson, S. McDonald, L. McGuinness, L. Stewart, J. Thomas, A. Tricco, V. Welch, P. Whiting, D. Moher (2021). "The PRISMA 2020 statement: an updated guideline for reporting systematic reviews". BMJ. doi:10.1136/bmj.n71

  • K. Parmar, C. Porter, C. Dickinson, P. Baimbridge, J. Pelham, E. Gowen (2022). "Autism‐friendly eyecare: Developing recommendations for service providers based on the experiences of autistic adults". Ophthalmic Physiologic Optic, 42(4). doi:10.1111/opo.12975

  • O. Pentz, J. Cooke, H. Sharp (2023). "Experiences of women with autistic spectrum condition accessing the Brighton and Hove Specialist Perinatal Mental Health Service". MHRJ, 28(3). doi:10.1108/mhrj-08-2022-0056

  • D. Raymaker*, K. McDonald, E. Ashkenazy, M. Gerrity, A. Baggs, C. Kripke, S. Hourston, C. Nicolaidis (2017). "Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities". Autism, 21(8). doi:10.1177/1362361316661261

  • M. Catherine Talcer, O. Duffy, K. Pedlow (2023). "A Qualitative Exploration into the Sensory Experiences of Autistic Mothers". J Autism Dev Disord, 53(2). doi:10.1007/s10803-021-05188-1

  • C. Walsh, S. Lydon, E. O’Dowd, P. O’Connor (2020). "Barriers to Healthcare for Persons with Autism: A Systematic Review of the Literature and Development of A Taxonomy". Developmental Neurorehabilitation, 23(7). doi:10.1080/17518423.2020.1716868

  • Welsh Government. (2016). "Prudent healthcare: Securing health and well-being for future generations. (Source)

  • N. Yau, S. Anderson, I. Smith (2023). "How is psychological wellbeing experienced by autistic women? Challenges and protective factors: A meta-synthesis". Research in Autism Spectrum Disorders, 102. doi:10.1016/j.rasd.2022.102101


 
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