Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study / Laura CARRAVALLAH ; Mona JOHNSON ; Jane O?SULLIVAN ; Nicholas CHOWN ; Stuart NEILSON ; Mary DOHERTY in Autism, 28-7 (July 2024)  

Public ISBD [article]  inAutism > 28-7 (July 2024) . - p.1746-1757 Titre : Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study Type de document : Texte imprimé et/ou numérique Auteurs : Laura CARRAVALLAH, Auteur ; Mona JOHNSON, Auteur ; Jane O?SULLIVAN, Auteur ; Nicholas CHOWN, Auteur ; Stuart NEILSON, Auteur ; Mary DOHERTY, Auteur Article en page(s) : p.1746-1757 Langues : Anglais (eng) Mots-clés : adults  autism  autistic  epistemic injustice  healthcare  health services  insider research  minority stress theory  qualitative research  triple empathy problem Index. décimale : PER Périodiques Résumé : Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem. Lay abstract Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth. En ligne : https://dx.doi.org/10.1177/13623613231205629 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531 [article] Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study [Texte imprimé et/ou numérique] / Laura CARRAVALLAH, Auteur ; Mona JOHNSON, Auteur ; Jane O?SULLIVAN, Auteur ; Nicholas CHOWN, Auteur ; Stuart NEILSON, Auteur ; Mary DOHERTY, Auteur . - p.1746-1757. Langues : Anglais (eng) in Autism > 28-7 (July 2024) . - p.1746-1757 Mots-clés : adults  autism  autistic  epistemic injustice  healthcare  health services  insider research  minority stress theory  qualitative research  triple empathy problem Index. décimale : PER Périodiques Résumé : Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem. Lay abstract Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth. En ligne : https://dx.doi.org/10.1177/13623613231205629 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=531

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