Intersections entre la pensée critique des systèmes et la recherche participative communautaire dans le développement d'un site Web destiné aux adultes autistes

Titre original en anglais : Intersections of Critical Systems Thinking and Community Based Participatory Research in Developing a Web Site for Autistic Adults

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Raymaker, D. M. (2000). Intersections of Critical Systems Thinking and Community Based Participatory Research in Developing a Web Site for Autistic Adults [Dissertation, Portland State University]. Portland State University Library. https://doi.org/10.15760/etd.2212

Date de publication: 01/01/2000 Ajout dans AutiHub: 06/07/2026 Type: Thèse Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
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1 / 1 (100,0 %)
  1. Dora M Raymaker *

Résumé

Les personnes handicapées, y compris celles qui se situent sur le spectre de l'autisme, constituent la plus grande minorité mondiale et connaissent d'importantes inégalités dans l'utilisation d'Internet. Les normes existantes pour des sites Web accessibles sont nécessaires, mais insuffisantes sans l'engagement direct des utilisateurs finaux dans l'identification des besoins d'accès. Pourtant, on sait peu de choses sur les méthodes permettant un engagement efficace, et il n'existe pas de lignes directrices sur l'accessibilité du Web dérivées systématiquement pour les utilisateurs finaux autistes. J'explore ici une approche hybride de l'engagement direct utilisant la pensée critique des systèmes (CST) et la recherche participative communautaire (CBPR) lors du codéveloppement d'un site Web axé sur les soins de santé par l'Academic Autism Spectrum Partnership in Research and Education (AASPIRE). J'explore ces idées à trois niveaux : la théorie, la pratique et l'autoréflexion critique. Au niveau théorique, j'examine les racines philosophiques et historiques communes de la CST et de la CBPR, les façons dont elles se recoupent et se complètent, et je propose l'approche hybride illustrée par AASPIRE. Au niveau pratique, j'explore notre processus de développement du site Web et j'évalue l'accessibilité, l'utilisabilité et l'acceptabilité du site Web pour les utilisateurs finaux autistes ; de ce travail découle un ensemble de recommandations pour travailler avec des personnes handicapées dans le développement technologique ainsi qu'un ensemble de lignes directrices d'accessibilité pour les utilisateurs finaux autistes. Au niveau de l'autoréflexion critique, j'examine mes propres expériences en tant que chercheur de l'intérieur lors du développement du site Web. Je synthétise ensuite les niveaux afin d'évaluer si l'adoption d'une approche hybride CST/CBPR pour le développement Web a été efficace ou non, comme l'indiquent la capacité de l'équipe à fonctionner comme une organisation apprenante émancipatrice (un indicateur d'une pensée systémique efficace au niveau organisationnel), ainsi que l'utilisabilité et l'accessibilité globales du site Web. Le résultat de la synthèse suggère qu'une approche hybride CST/CBPR a été efficace. Les implications de ce travail comprennent des innovations dans les méthodes de CST pour opérationnaliser son engagement en faveur de l'émancipation humaine, la possibilité d'intégrer à la CBPR une littérature sur la pensée systémique davantage alignée idéologiquement, un moyen pour les personnes souhaitant créer une organisation apprenante où le pouvoir est plus équilibré, des innovations concernant l'inclusion des personnes handicapées dans la recherche et le développement technologique, des sites Web plus accessibles pour les personnes se situant sur le spectre de l'autisme, et un possible léger déplacement au fil du temps du discours dominant sur l'autisme, le handicap et la valeur des chercheurs de l'intérieur.

People with disabilities, including those on the autism spectrum, comprise the world's largest minority and experience significant inequities in Internet use. Existing standards for accessible web sites are necessary but not sufficient without the direct engagement of end users in identifying access needs. Yet little is known about methods for effective engagement, and there are no systematically derived Web accessibility guidelines for autistic end users. Here I explore a hybrid approach to direct engagement using critical systems thinking (CST) and community based participatory research (CBPR) during the co-development of a healthcare-focused web site by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). I explore these ideas on three levels: theory, practice, and critical self-reflection. On the theory level, I examine the common philosophical and historical roots of CST and CBPR, ways in which they intersect and complement, and propose the hybrid approach exemplified by AASPIRE. On the practice level, I explore our web site development process and evaluate the accessibility, usability, and acceptability of the web site for autistic end users; from that work, comes a set of recommendations for working with people with disabilities in technology development and a set of accessibility guidelines for autistic end users. On the critical self-reflection level, I inquire into my own experiences as an insider-researcher during the web site development. I then synthesize the levels to evaluate whether or not taking a hybrid CST/CBPR approach to web development was effective, as indicated by the team's ability to function as an emancipatory learning organization (an indicator of effective systems thinking on an organizational level), and the overall usability and accessibility of the web site. The result of the synthesis suggests a hybrid CST/CBPR approach was effective. Implications of this work include innovations in CST methods for operationalizing its commitment to human emancipation, potential for drawing a more ideologically-aligned systems thinking literature into the domain of CBPR, a means for individuals wishing to create a more power-balanced learning organization, innovations around including people with disabilities in research and technology development, more accessible web sites for people on the autism spectrum, and a potential small shift of dominant discourse around autism, disability, and the value of insider-researchers over time.

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 11:31.

Références citées
101
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 101 (7,9 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
13 / 248 (5,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 13 / 47 (27,7 %). Auteurices cité·es distinct·es identifié·es comme autistes : 7 / 220 (3,2 %).
Occurrences citées rattachées à la base AutiHub
47 / 248 (19,0 %)
Auteurices cité·es distinct·es rattaché·es : 32 / 220 (14,5 %)
Occurrences rattachées, non identifiées comme autistes
34 / 47 (72,3 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 34 / 248 (13,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 25 / 32 (78,1 %).
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