Comprendre les répercussions de la douleur chronique chez les adolescents autistes et la prise en charge efficace de la douleur : une étude dyadique adolescent-mère par analyse thématique réflexive

Titre original en anglais : Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent–maternal dyadic study

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Jordan, A., Parchment, A., Gauntlett‐Gilbert, J., Jones, A., Donaghy, B., Wainwright, E., Connell, H., Walden, J., & Moore, D. (2024). Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent–maternal dyadic study. Journal of Pediatric Psychology, 49(3), 185-194. https://doi.org/10.1093/jpepsy/jsae004

Date de publication: 07/02/2024 Ajout dans AutiHub: 05/07/2026 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
1 / 9 (11,1 %)
  1. Abbie Jordan
  2. Amelia Parchment
  3. Jeremy Gauntlett‐Gilbert
  4. Abigail Jones
  5. Bethany Donaghy *
  1. Elaine Wainwright
  2. Hannah Connell
  3. J. Walden
  4. David Moore

Résumé

OBJECTIF : Les éléments sensoriels constituent des caractéristiques centrales de la douleur chronique et de l'autisme, mais les connaissances sur l'expérience de la douleur chez les adolescents autistes sont limitées. On sait peu de choses sur la manière dont les adolescents autistes vivent la douleur chronique, gèrent leur douleur et perçoivent le traitement psychologique de leur douleur chronique. MÉTHODES : Dix adolescents autistes (6 filles, 3 garçons et 1 s'identifiant comme agenre) souffrant de douleur chronique et leurs mères (n = 10) ont participé à des entretiens semi-structurés portant sur leurs perceptions de la vie avec une douleur chronique. Les participants ont été recrutés dans des services de prise en charge de la douleur au Royaume-Uni. Selon les préférences, les entretiens ont été réalisés individuellement (n = 10) ou en dyades (n = 10 participants répartis en 5 dyades). Les données ont été analysées à l'aide d'une analyse thématique réflexive inductive. RÉSULTATS : Deux thèmes ont été générés. Le thème 1, « surstimulés et s'efforçant de garder le contrôle », décrivait comment l'expérience des adolescents d'une sensibilité accrue augmentait leurs niveaux d'anxiété et la douleur qui s'ensuivait, illustrant une relation réciproque entre l'anxiété, la douleur et les éléments sensoriels. Le thème 2, « tout le monde n'entre pas dans le moule », rendait compte de la manière dont les adolescents autistes se positionnaient comme différents des autres en raison de la nature unique du fait d'être autiste et de vivre avec la douleur. Ce sentiment de différence avait un impact négatif sur la capacité des adolescents à s'engager dans le traitement standard de la douleur chronique et à en bénéficier. CONCLUSIONS : Les résultats suggèrent que les adolescents autistes vivant avec la douleur ressentent la douleur et font face à des obstacles à un traitement efficace de la douleur. Nos résultats mettent en évidence le besoin de ressources éducatives pour aider les cliniciens à mieux comprendre l'expérience des adolescents autistes vivant avec la douleur. En retour, cette compréhension pourrait améliorer le traitement et les résultats dans cette population.

OBJECTIVE: Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain. METHODS: Ten autistic adolescents (6 female, 3 male, and 1 self-identified as agender) with chronic pain and their mothers (n = 10) participated in semistructured interviews concerning their perceptions of living with chronic pain. Participants were recruited from U.K. pain management services. According to preference, interviews were conducted individually (n = 10) or dyadically (n = 10 participants across 5 dyads). Data were analyzed using inductive reflexive thematic analysis. RESULTS: Two themes were generated. Theme 1, "overstimulated and striving for control" described how adolescents' experience of heightened sensitivity enhanced adolescents' levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain, and sensory elements. Theme 2, "not everyone fits the mold" captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference negatively impacted adolescents' ability to engage with and benefit from the standard treatment for chronic pain. CONCLUSIONS: Findings suggest that autistic adolescents living with pain experience pain and face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.

Bibliographie citée par cette référence

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Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
56
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
5 / 56 (8,9 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
7 / 219 (3,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 7 / 62 (11,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 190 (3,2 %).
Occurrences citées rattachées à la base AutiHub
62 / 219 (28,3 %)
Auteurices cité·es distinct·es rattaché·es : 49 / 190 (25,8 %)
Occurrences rattachées, non identifiées comme autistes
55 / 62 (88,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 55 / 219 (25,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 43 / 49 (87,8 %).
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