Traduction: G.M.
Autism. 2016 Sep 22. pii: 1362361316661261.
Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilitie
Raymaker DM1, McDonald KE2, Ashkenazy E3, Gerrity M4, Baggs AM3, Kripke C5, Hourston S6, Nicolaidis C7.
Author information
- 1Portland State University, USA Academic Autism Spectrum Partnership in Research and Education, USA draymake@pdx.edu
- 2Academic Autism Spectrum Partnership in Research and Education, USA Syracuse University, USA.
- 3Academic Autism Spectrum Partnership in Research and Education, USA.
- 4Academic Autism Spectrum Partnership in Research and Education, USA Oregon Health & Science University, USA.
- 5Academic Autism Spectrum Partnership in Research and Education, USA University of San Francisco, USA.
- 6Oregon Health & Science University, USA.
- 7Portland State University, USA Academic Autism Spectrum Partnership in Research and Education, USA Oregon Health & Science University, USA.
Abstract
Notre
objectif était d'utiliser une approche de recherche participative
communautaire pour identifier et comparer les entraves à la santé vécues
par les adultes autistes et les adultes avec et sans d'autres handicaps. Pour
ce faire, nous avons développé un instrument le formulaire court et long pour évaluer les obstacles dans les milieux cliniques et de
recherche. En
utilisant les obstacles du formulaire Liste-Long Healthcare Form, nous avons
interrogé 437 participants (209 autistes, 55 non-autistes handicapés, et
173 non-autiste sans handicap). Les participants
autistes ont désigné des entraves différentes et plus grandes dans les soins de santé,
en particulier dans les domaines liés à la régulation émotionnelle,
la communication patient-soignant, la sensibilité sensorielle, et la
navigation dans la santé. Les obstacles les plus importants étaient la peur ou l'anxiété (35% (n = 74)), ne pas être en
mesure de traiter l'information assez rapidement pour participer à des
discussions en temps réel sur la santé (32% (n = 67)), les préoccupation sur le coût (30% ( n
= 62)), les installations causant des problèmes sensoriels 30% ((n =
62)), et la difficulté à communiquer avec les fournisseurs de soins (29% (n =
61)). Le formulaire long montre un contenu et une validité satisfaisante. Les
éléments combinés pour créer le formulaire court avaient principalement des niveaux de corrélation élevés (plage 0,2-0,8, p <0,001) et ont
montré une sensibilité au changement. Nous recommandons aux fournisseurs de soins de santé, aux cliniques et
autres personnes travaillant dans les établissements de santé d'être
conscients de ces obstacles, et nous conseillons vivement plus de recherches sur les interventions pour explorer des moyens pour les éliminer.
Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist-Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2-0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.
The Author(s) 2016.
Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist-Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2-0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.
The Author(s) 2016.
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