L’impact des premières phases de la COVID-19 sur la santé mentale des adultes autistes au Royaume-Uni : une étude longitudinale à méthodes mixtes

Titre original en anglais : The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: A longitudinal mixed-methods study

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Bundy, R., Mandy, W., Crane, L., Crane, L., Hull, L., Brede, J., Hull, L., Brinkert, J., & Cook, J. (2022). The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: A longitudinal mixed-methods study. Autism, 26(7), 1765-1782. https://doi.org/10.1177/13623613211065543

Date de publication: 27/01/2022 Ajout dans AutiHub: 30/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
9
Auteur·ices de la publication identifié·es comme autistes
0 / 9 (0,0 %)
  1. Rebecca Bundy
  2. Will Mandy
  3. Laura Crane
  4. Laura Crane
  5. Laura Hull
  1. Janina Brede
  2. Laura Hull
  3. Jana Brinkert
  4. Julia Cook

Résumé

Nous avons utilisé des méthodes mixtes afin de comprendre la nature et les facteurs des changements de santé mentale chez des adultes autistes au Royaume-Uni durant les premières phases de la pandémie de COVID-19. Dans les analyses quantitatives, nous avons examiné la nature et les prédicteurs des changements de dépression, d’anxiété et de stress, mesurés prospectivement chez 70 adultes autistes à la Vague 1 (juste avant le premier confinement au Royaume-Uni) et à la Vague 2 (10 à 15 semaines après le début du premier confinement au Royaume-Uni). Les déclarations rétrospectives de changements de santé mentale à la Vague 2 ont également été analysées pour ces 70 participants. Pour l’analyse qualitative, 133 participants, dont les 70 inclus dans les analyses quantitatives, ont fourni des récits de leurs expériences de la pandémie à la Vague 2. Dans les analyses quantitatives, les déclarations rétrospectives indiquaient que la santé mentale des participants s’était détériorée, mais les données prospectives ont montré une image différente, les scores globaux d’anxiété et de stress diminuant entre les Vagues 1 et 2. Néanmoins, l’impact de la pandémie sur la santé mentale des adultes autistes était variable, une minorité importante signalant une détérioration significative de la santé mentale. L’analyse qualitative a fait ressortir quatre thèmes ayant contribué aux changements de santé mentale : a) s’adapter aux changements du monde social, b) vivre avec l’incertitude, c) les perturbations de l’autorégulation et d) les obstacles à la satisfaction des besoins fondamentaux. Résumé grand public Durant la pandémie de COVID-19, des niveaux élevés de dépression, d’anxiété et de stress ont été rapportés dans la population générale. Cependant, beaucoup moins d’informations ont été rapportées sur l’impact de la COVID-19 sur la santé mentale des personnes autistes. Ce que nous avons fait : dans la présente étude, nous avons examiné comment la santé mentale des adultes autistes au Royaume-Uni a changé durant les premières phases de la pandémie de COVID-19. Au total, 133 participants ont rempli un questionnaire en ligne à deux moments différents. Parmi les 133 participants, 70 ont rempli le questionnaire au premier moment, juste avant le début du confinement national. Cela nous a permis d’examiner les changements de leur santé mentale, depuis avant le confinement jusqu’à 10 à 15 semaines pendant le confinement. Tous les participants, soit 133 personnes, nous ont parlé de leurs expériences de la pandémie. Ce que nous avons constaté : bien que de nombreux adultes autistes nous aient indiqué que leur santé mentale s’était détériorée, l’expérience des personnes variait. Pour certains adultes autistes, certains aspects de la santé mentale, par exemple l’anxiété et le stress, se sont en réalité améliorés. Les participants ont également décrit les changements sociaux survenus, à domicile et dans le monde extérieur. Ils ont décrit des sentiments d’incertitude pendant la pandémie et ont expliqué comment la pandémie avait affecté certaines de leurs stratégies d’adaptation antérieures. Les participants nous ont aussi parlé de leurs difficultés d’accès aux services de santé et à la nourriture durant les premières phases de la pandémie. Dans notre article, nous discutons ces résultats et nous nous concentrons sur les changements nécessaires pour garantir que les personnes autistes soient mieux soutenues à mesure que la pandémie se poursuit.

We used mixed methods to learn about the nature and drivers of mental health changes among autistic adults in the United Kingdom during the early stages of the COVID-19 pandemic. In quantitative analyses, we examined the nature and predictors of change in depression, anxiety and stress, prospectively measured in 70 autistic adults at Wave 1 (just before the United Kingdom’s first lockdown) and Wave 2 (10–15 weeks into the United Kingdom’s first lockdown). Retrospective Wave 2 reports of mental health change were also analysed for these 70 participants. For the qualitative analysis, 133 participants (including the 70 from the quantitative analyses) provided reports on their experiences of the pandemic at Wave 2. In quantitative analyses, retrospective reports indicated that participants’ mental health worsened, but prospective data showed a different picture, with overall anxiety and stress scores reducing between Waves 1 and 2. Nevertheless, the mental health impact of the pandemic on autistic adults was variable, with a sizable minority reporting a significant decline in mental health. Qualitative analysis yielded four themes that contributed to mental health changes: (a) adjusting to changes to the social world, (b) living with uncertainty, (c) disruptions to self-regulation, and (d) barriers to fulfilling basic needs. Lay abstract During the COVID-19 pandemic, high levels of depression, anxiety and stress have been reported in the general population. However, much less has been reported about the impact of COVID-19 on the mental health of autistic people. What we did: In the present study, we investigated how the mental health of autistic adults in the United Kingdom changed during the early stages of the COVID-19 pandemic. In total, 133 participants completed an online survey at two different time points. Of the 133 participants, 70 completed the survey at the first time point just before the onset of the national lockdown. This allowed us to look at changes in their mental health, from before the lockdown to 10 to 15 weeks during lockdown. All participants (133) told us about their experiences of the pandemic. What we found: While many autistic adults told us that their mental health worsened, people’s experience varied. For some autistic adults, aspects of mental health (e.g. anxiety, stress) actually improved. Participants also described social changes that had occurred, at home and in the outside world. They described feelings of uncertainty during the pandemic, and discussed how the pandemic had affected some of their previous coping strategies. Participants also told us about their difficulties in accessing healthcare services and food during the early stages of the pandemic. In our article, we discuss these findings and focus on what needs to change to ensure that autistic people are better supported as the pandemic continues.

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Références citées
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2
Références avec noms bruts d’auteurices restant à vérifier
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370
À partir du DOI ou de métadonnées externes
370
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
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0
139 / 370 (37,6 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 231 / 370 (62,4 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
25 / 370 (6,8 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 25 / 139 (18,0 %). Personnes distinctes identifiées comme autistes : 23 / 327 (7,0 %).
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