Création d'instruments d'enquête accessibles à utiliser avec des adultes autistes et des personnes présentant une déficience intellectuelle : enseignements tirés et recommandations

Titre original en anglais : Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref OpenCitations
En savoir plus sur les sources utilisées

Nicolaidis, C., Raymaker, D. M., McDonald, K., Lund, E. M., Leotti, S. M., Kapp, S. K., Katz, M., Beers, L., Kripke, C., Maslak, J., Hunter, M., & Zhen, K. Y. (2020). Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations. Autism in Adulthood, 2(1), 61-76. https://doi.org/10.1089/aut.2019.0074

Date de publication: 19/02/2020 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI)

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
12
Auteur·ices de la publication identifié·es comme autistes
4 / 12 (33,3 %)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Katherine McDonald
  4. Emily M. Lund
  1. Sandra M. Leotti
  2. Steven K. Kapp *
  3. Marsha Katz
  4. Leanne Beers
  1. Clarissa Kripke
  2. Joelle Maslak *
  3. Morrigan Hunter *
  4. Kelly Y. Zhen

Résumé

Malgré une reconnaissance croissante de la nécessité de mener des recherches sur l'autisme à l'âge adulte, peu d'instruments d'enquête ont été validés pour une utilisation auprès d'adultes autistes. Nous avons mené une ethnographie institutionnelle de deux partenariats connexes qui ont utilisé des approches participatives pour mener des recherches en collaboration avec des personnes autistes et des personnes présentant une déficience intellectuelle. Dans cet article, nous nous concentrons sur les enseignements tirés de l'adaptation d'instruments d'enquête destinés à être utilisés dans six études distinctes. Les partenaires communautaires ont identifié plusieurs problèmes courants qui rendaient les instruments originaux inaccessibles. Parmi les exemples figuraient : (1) l'utilisation d'un vocabulaire difficile, de termes déroutants ou de figures de style ; (2) une structure de phrase complexe, une grammaire déroutante ou des phrases incomplètes ; (3) des options de réponse imprécises ; (4) une variation de la réponse aux items selon différents contextes ; (5) de l'anxiété liée à l'impossibilité de répondre avec une exactitude totale ; (6) l'absence d'items permettant de saisir pleinement les aspects spécifiques à l'autisme d'un construit ; et (7) un langage ou des concepts capacitistes. Les adaptations courantes comprenaient : (1) l'ajout de préambules pour accroître la précision ou expliquer le contexte ; (2) la modification des items pour simplifier la structure des phrases ; (3) le remplacement des mots de vocabulaire difficiles, des termes déroutants ou des figures de style par des termes plus directs ; (4) l'ajout d'hyperliens définissant les termes problématiques ou proposant des exemples ou des clarifications ; (5) l'ajout de graphiques pour accroître la clarté des options de réponse ; et (6) l'ajout de nouveaux items liés aux aspects spécifiques à l'autisme du construit. Nous mettons en garde contre l'utilisation d'instruments élaborés pour d'autres populations, à moins que les instruments ne soient soigneusement testés auprès d'adultes autistes, et nous décrivons une approche possible pour garantir que les instruments soient accessibles à un large éventail de participants autistes. Résumé en langage clair Pourquoi ce sujet est-il important ? Pour comprendre ce qui peut améliorer la vie des adultes autistes, les chercheurs doivent recueillir directement auprès d'adultes autistes des données d'enquête. Toutefois, la plupart des instruments d'enquête ont été conçus pour la population générale et peuvent ou non bien fonctionner auprès d'adultes autistes. Quel est l'objectif de cet article ? Utiliser les enseignements tirés de notre expérience d'adaptation d'enquêtes, en partenariat avec des adultes autistes, afin de créer un ensemble de recommandations sur la manière dont les chercheurs peuvent adapter des instruments pour les rendre accessibles aux adultes autistes. Qu'ont fait les auteurs ? Entre 2006 et 2019, l'Academic Autism Spectrum Partnership in Research and Education (AASPIRE) et le Partnering with People with Developmental Disabilities to Address Violence Consortium ont utilisé une approche de recherche participative pour adapter de nombreux instruments d'enquête destinés à être utilisés dans six études distinctes. Nous avons examiné les archives de ces partenariats et identifié des enseignements importants. À quoi ressemble ce processus d'adaptation recommandé ? Le processus d'adaptation comprend les éléments suivants : (1) co-créer des lignes directrices de collaboration et fournir aux partenaires communautaires les informations générales nécessaires sur la terminologie et les processus utilisés dans la recherche par enquête ; (2) sélectionner de manière collaborative les construits à mesurer ; (3) discuter de chaque construit afin de parvenir à une compréhension partagée de sa signification ; (4) identifier les instruments existants pour chaque construit ; (5) sélectionner parmi les instruments disponibles, ou décider qu'aucun n'est acceptable et qu'il est nécessaire de créer une nouvelle mesure ; (6) évaluer les adaptations nécessaires pour chaque instrument ; (7) modifier de manière collaborative les préambules, les items ou les options de réponse, selon les besoins ; (8) ajouter, lorsque nécessaire, des définitions sous forme d'hyperliens afin de clarifier ou de fournir des exemples de termes et de construits ; (9) créer de nouvelles mesures, lorsque nécessaire, en partenariat avec des adultes autistes ; (10) examiner la pertinence de créer des versions de rapport par un tiers de chaque mesure adaptée ; et (11) évaluer les propriétés psychométriques des instruments adaptés. Quelles étaient les préoccupations courantes concernant les instruments existants ? Les partenaires disaient souvent que, s'ils répondaient à une enquête utilisant les instruments originaux, ils ressentiraient de la confusion, de la frustration, de l'anxiété ou de la colère. Ils ont déclaré à plusieurs reprises que, confrontés à de telles mesures, ils fourniraient des réponses peu fiables, laisseraient des items sans réponse ou cesseraient simplement de participer à l'étude. Les préoccupations courantes comprenaient l'utilisation d'un vocabulaire difficile, de termes déroutants, d'une structure de phrase complexe, de formulations alambiquées, de figures de style ou d'un langage imprécis. Les partenaires éprouvaient des difficultés avec les options de réponse utilisant des termes vagues. Ils se sentaient également anxieux si leur réponse risquait de ne pas être complètement exacte ou si leurs réponses pouvaient varier selon les situations. Souvent, les enquêtes ne saisissaient pas complètement l'idée visée. Parfois, les instruments utilisaient un langage ou des idées offensants. Et, dans certains cas, il n'existait tout simplement aucun instrument pour mesurer ce qu'ils considéraient comme important. Quelles étaient les adaptations courantes ? Les adaptations courantes comprenaient : (1) l'ajout de préambules pour accroître la précision ou expliquer le contexte ; (2) la modification des items pour simplifier la structure des phrases ; (3) le remplacement des mots de vocabulaire difficiles, des termes déroutants ou des figures de style par des termes plus directs ; (4) l'ajout d'hyperliens définissant les termes problématiques ou proposant des exemples ou des clarifications ; (5) l'ajout de graphiques pour accroître la clarté des options de réponse ; et (6) l'ajout de nouveaux items liés aux aspects spécifiques à l'autisme du construit. Comment cet article aidera-t-il les adultes autistes maintenant ou à l'avenir ? Nous espérons que cet article encouragera les chercheurs à collaborer avec des adultes autistes afin de créer de meilleurs instruments d'enquête. Ainsi, lorsque les chercheurs évalueront des interventions et des services, ils disposeront des bons outils pour déterminer s'ils sont efficaces.

Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants. Lay summary Why is this topic important? To understand what can improve the lives of autistic adults, researchers need to collect survey data directly from autistic adults. However, most survey instruments were made for the general population and may or may not work well for autistic adults. What is the purpose of this article? To use lessons learned from our experience adapting surveys—in partnership with autistic adults—to create a set of recommendations for how researchers may adapt instruments to be accessible to autistic adults. What did the authors do? Between 2006 and 2019, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) and the Partnering with People with Developmental Disabilities to Address Violence Consortium used a participatory research approach to adapt many survey instruments for use in six separate studies. We reviewed records from these partnerships and identified important lessons. What is this recommended adaptation process like? The adaptation process includes the following: (1) Co-creating collaboration guidelines and providing community partners with necessary background about terminology and processes used in survey research; (2) Collaboratively selecting which constructs to measure; (3) Discussing each construct so that we can have a shared understanding of what it means; (4) Identifying existing instruments for each construct; (5) Selecting among available instruments (or deciding that none are acceptable and that we need to create a new measure); (6) Assessing the necessary adaptations for each instrument; (7) Collaboratively modifying prefaces, items, or response options, as needed; (8) Adding “hotlink” definitions where necessary to clarify or provide examples of terms and constructs; (9) Creating new measures, when needed, in partnership with autistic adults; (10) Considering the appropriateness of creating proxy report versions of each adapted measure; and (11) Assessing the adapted instruments' psychometric properties. What were common concerns about existing instruments? Partners often said that, if taking a survey that used the original instruments, they would experience confusion, frustration, anxiety, or anger. They repeatedly stated that, faced with such measures, they would offer unreliable answers, leave items blank, or just stop participating in the study. Common concerns included the use of difficult vocabulary, confusing terms, complex sentence structure, convoluted phrasings, figures of speech, or imprecise language. Partners struggled with response options that used vague terms. They also felt anxious if their answer might not be completely accurate or if their responses could vary in different situations. Often the surveys did not completely capture the intended idea. Sometimes, instruments used offensive language or ideas. And in some cases, there just were not any instruments to measure what they thought was important. What were common adaptations? Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. How will this article help autistic adults now or in the future? We hope that this article encourages researchers to collaborate with autistic adults to create better survey instruments. That way, when researchers evaluate interventions and services, they can have the right tools to see if they are effective.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de l’inclusion dans la bibliographie

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
74
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
16 / 74 (21,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
41 / 396 (10,4 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 41 / 204 (20,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 7 / 233 (3,0 %).
Occurrences citées rattachées à la base AutiHub
204 / 396 (51,5 %)
Auteurices cité·es distinct·es rattaché·es : 64 / 233 (27,5 %)
Occurrences rattachées, non identifiées comme autistes
163 / 204 (79,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 163 / 396 (41,2 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 57 / 64 (89,1 %).
  1. Sheldon Cohen (1988). Perceived stress in a probability sample of the United States .
    Type: Article OpenAlex: https://openalex.org/W1682025172
    OpenAlex
  2. (s. d.). Interagency Autism Coordinating Committee (IACC). 2016–2017 Interagency Autism Coordinating Committee Strategic Plan For Autism Spectrum Disorder. October 2017. https://iacc.hhs.gov/publications/strategic-plan/2017/ (accessed January29 2020).
    Type: Autre
    Crossref
  3. Mary Oschwald , Sandra M. Leotti , Dora M Raymaker * , Marsha Katz , Rebecca Goe , Mark Harviston et al. (2014). Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities . Disability and Health Journal, 7(3), 292-301. Elsevier BV.
    Type: Article DOI: 10.1016/j.dhjo.2014.01.002 OpenAlex: https://openalex.org/W1977636331
    Crossref OpenAlex OpenCitations
  4. DEMMIE MAYFIELD , GAIL MCLEOD , PATRICIA HALL (1974). The CAGE Questionnaire: Validation of a New Alcoholism Screening Instrument . American Journal of Psychiatry, 131(10), 1121-1123. American Psychiatric Association Publishing.
    Type: Article DOI: 10.1176/ajp.131.10.1121 OpenAlex: https://openalex.org/W1782492077
    Crossref OpenAlex OpenCitations
  5. Patricia Howlin , Joanne Arciuli , Sander Begeer , Jon Brock , Kristina Clarke , Debra Costley et al. (2015). Research on adults with autism spectrum disorder: Roundtable report . Journal of Intellectual and Developmental Disability, 40(4), 388-393. Informa UK Limited.
    Type: Article DOI: 10.3109/13668250.2015.1064343 OpenAlex: https://openalex.org/W1869783492
    Crossref OpenAlex OpenCitations
  7. Carol J. Gill (1997). Four types of integration in disability identity development . Journal of Vocational Rehabilitation, 9(1), 39-46. SAGE Publications.
    Type: Article DOI: 10.3233/jvr-1997-9106 OpenAlex: https://openalex.org/W1787574528
    Crossref OpenAlex OpenCitations
  8. Patricia Howlin , Iliana Magiati (2017). Autism spectrum disorder . Current Opinion in Psychiatry, 30(2), 69-76. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/yco.0000000000000308 OpenAlex: https://openalex.org/W2569059432
    Crossref OpenAlex OpenCitations
  9. Katherine McDonald , Nicole E. Conroy , Carolyn I. Kim , Emily J. LoBraico , Ellis M. Prather , Robert S. Olick (2016). Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability . Journal of Empirical Research on Human Research Ethics, 11(5), 424-438. SAGE Publications.
    Type: Article DOI: 10.1177/1556264616651182 OpenAlex: https://openalex.org/W2440795365
    Crossref OpenAlex OpenCitations
  10. H. ‐C. Steinhausen , C. Mohr Jensen , M. B. Lauritsen (2016). A systematic review and meta‐analysis of the long‐term overall outcome of autism spectrum disorders in adolescence and adulthood . Acta Psychiatrica Scandinavica, 133(6), 445-452. Wiley.
    Type: Article DOI: 10.1111/acps.12559 OpenAlex: https://openalex.org/W2235277659
    Crossref OpenAlex OpenCitations
  12. Paul Shattuck , Anne M. Roux , Laura E Hudson , Julie Lounds Taylor , Matthew J Maenner , Jean-Francois Trani (2012). Services for Adults with an Autism Spectrum Disorder . The Canadian Journal of Psychiatry, 57(5), 284-291. SAGE Publications.
    Type: Article DOI: 10.1177/070674371205700503 OpenAlex: https://openalex.org/W1950929781
    Crossref OpenAlex OpenCitations
  13. Andrew Cashin , Thomas Buckley , Julian N Trollor , Nicholas Lennox (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder . Journal of Intellectual Disabilities, 22(1), 96-108. SAGE Publications.
    Type: Article DOI: 10.1177/1744629516665242 OpenAlex: https://openalex.org/W2519892621
    Crossref OpenAlex OpenCitations
  14. Carol D. Ryff (1989). Happiness is everything, or is it? Explorations on the meaning of psychological well-being. Journal of Personality and Social Psychology, 57(6), 1069-1081. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0022-3514.57.6.1069 OpenAlex: https://openalex.org/W1966603703
    Crossref OpenAlex OpenCitations
  16. Julie Lounds Taylor , Melissa L. McPheeters , Nila A. Sathe , Dwayne Dove , Jeremy Veenstra‐VanderWeele , Zachary Warren (2012). A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders . Pediatrics, 130(3), 531-538. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2012-0682 OpenAlex: https://openalex.org/W2137032366
    Crossref OpenAlex OpenCitations
  17. Claudia Sanmartin , Jean-Marie Berthelot , Edward Ng , Kellie Murphy , Debra L. Blackwell , Jane F. Gentleman et al. (2006). Comparing Health And Health Care Use In Canada And The United States . Health Affairs, 25(4), 1133-1142. Health Affairs Publishing, LLC.
    Type: Article DOI: 10.1377/hlthaff.25.4.1133 OpenAlex: https://openalex.org/W2056637352
    Crossref OpenAlex OpenCitations
  18. Donna Della Femina , Catherine A. Yeager , Dorothy Otnow Lewis (1990). Child abuse: Adolescent records vs. adult recall . Child Abuse & Neglect, 14(2), 227-231. Elsevier BV.
    Type: Article DOI: 10.1016/0145-2134(90)90033-p OpenAlex: https://openalex.org/W1981459575
    OpenAlex
  19. Anne V. Kirby , Grace T. Baranek , Leslie Fox (2016). Longitudinal Predictors of Outcomes for Adults With Autism Spectrum Disorder . OTJR: Occupational Therapy Journal of Research, 36(2), 55-64. SAGE Publications.
    Type: Article DOI: 10.1177/1539449216650182 OpenAlex: https://openalex.org/W2413100439
    Crossref OpenAlex OpenCitations
  21. David W. Chapman , John F. Carter (1979). Translation Procedures for the Cross Cultural Use of Measurement Instruments . Educational Evaluation and Policy Analysis, 1(3), 71-76. American Educational Research Association (AERA).
    Type: Article DOI: 10.3102/01623737001003071 OpenAlex: https://openalex.org/W1983543931
    Crossref OpenAlex OpenCitations
  22. (s. d.). U. S. Department of Health and Human Services. Report to Congress: Young Adults and Transitioning Youth with Autism Spectrum Disorder. October 2017. https://www.hhs.gov/sites/default/files/2017AutismReport.pdf (accessed January29 2020).
    Type: Autre
    Crossref
  23. Jacqui Rodgers , Kirstin Farquhar , David Mason , Samuel Brice , Sarah Wigham , Barry Ingham et al. (2020). Development and Initial Evaluation of the Anxiety Scale for Autism-Adults . Autism in Adulthood, 2(1), 24-33. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0044 OpenAlex: https://openalex.org/W3008810730
    Crossref OpenAlex OpenCitations
  24. Margaret A. Nosek , Rosemary B. Hughes , Nancy J. Petersen , Heather B. Taylor , Susan Robinson-Whelen , Margaret Byrne et al. (2006). Secondary Conditions in a Community-Based Sample of Women With Physical Disabilities Over a 1-Year Period . Archives of Physical Medicine and Rehabilitation, 87(3), 320-327. Elsevier BV.
    Type: Article DOI: 10.1016/j.apmr.2005.11.003 OpenAlex: https://openalex.org/W1989730725
    Crossref OpenAlex OpenCitations
  25. Katherine McDonald , Dora M Raymaker * (2013). Paradigm Shifts in Disability and Health: Toward More Ethical Public Health Research . American Journal of Public Health, 103(12), 2165-2173. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2013.301286 OpenAlex: https://openalex.org/W2134344619
    Crossref OpenAlex OpenCitations
  26. Sheldon Cohen , Tom Kamarck , Robin Mermelstein (1983). A Global Measure of Perceived Stress . Journal of Health and Social Behavior, 24(4), 385. SAGE Publications.
    Type: Article DOI: 10.2307/2136404 OpenAlex: https://openalex.org/W1996299251
    Crossref OpenAlex OpenCitations
  29. Lillian K. Durán , Alisha K. Wackerle-Hollman , Theresa L. Kohlmeier , Stephanie K. Brunner , Jose Palma , Chase H. Callard (2019). Individual Growth and Development Indicators-Español: Innovation in the development of Spanish oral language general outcome measures . Early Childhood Research Quarterly, 48, 155-172. Elsevier BV.
    Type: Article DOI: 10.1016/j.ecresq.2019.02.001 OpenAlex: https://openalex.org/W2939829377
    Crossref OpenAlex OpenCitations
  30. Mary Ann Curry , Paula Renker , Rosemary B. Hughes , Susan Robinson-Whelen , Mary Oschwald , Paul R. Swank et al. (2009). Development of Measures of Abuse Among Women With Disabilities and the Characteristics of Their Perpetrators . Violence Against Women, 15(9), 1001-1025. SAGE Publications.
    Type: Article DOI: 10.1177/1077801209340306 OpenAlex: https://openalex.org/W2108607314
    Crossref OpenAlex OpenCitations
  31. Susan Robinson-Whelen , Rosemary B. Hughes , Heather B. Taylor , John W. Hall , Lynn P. Rehm (2007). Depression self-management program for rural women with physical disabilities. Rehabilitation Psychology, 52(3), 254-262. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0090-5550.52.3.254 OpenAlex: https://openalex.org/W2009307137
    Crossref OpenAlex OpenCitations
  32. Israel BA (2003). Critical issues in developing and following community based participatory research principles . In: Minkler M, Wallerstein N, eds. Community Based Participatory Research for Health. San Fransisco, CA: Jossey-Bass;, 53.
    Type: Autre
    Crossref
  34. Cheryl A Wright , Scott D. Wright , Marissa L Diener , Jacqueline Eaton (2014). Autism spectrum disorder and the applied collaborative approach: a review of community based participatory research and participatory action research . Journal of Autism, 1(1), 1. Herbert Publications PVT LTD.
    Type: Article DOI: 10.7243/2054-992x-1-1 OpenAlex: https://openalex.org/W2063681639
    Crossref OpenAlex OpenCitations
  36. Michael Irwin , Kamal Haydari Artin , Michael N. Oxman (1999). Screening for Depression in the Older Adult . Archives of Internal Medicine, 159(15), 1701. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archinte.159.15.1701 OpenAlex: https://openalex.org/W2092434379
    Crossref OpenAlex OpenCitations
  38. Edward B. Blanchard , Jacqueline Jones-Alexander , Todd C. Buckley , Catherine A. Forneris (1996). Psychometric properties of the PTSD checklist (PCL) . Behaviour Research and Therapy, 34(8), 669-673. Elsevier BV.
    Type: Article DOI: 10.1016/0005-7967(96)00033-2 OpenAlex: https://openalex.org/W2094767740
    Crossref OpenAlex OpenCitations
  39. Sarah Cassidy , L. Bradley , E. Bowen , Sarah Wigham , Jacqui Rodgers (2018). Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review . Autism Research, 11(5), 738-754. Wiley.
    Type: Article DOI: 10.1002/aur.1922 OpenAlex: https://openalex.org/W2783826777
    Crossref OpenAlex OpenCitations
  40. Katharine A. Bradley , Anna F. DeBenedetti , Robert J. Volk , Emily C. Williams , Danielle Frank , Daniel R. Kivlahan (2007). AUDIT‐C as a Brief Screen for Alcohol Misuse in Primary Care . Alcoholism: Clinical and Experimental Research, 31(7), 1208-1217. Wiley.
    Type: Article DOI: 10.1111/j.1530-0277.2007.00403.x OpenAlex: https://openalex.org/W2098658501
    Crossref OpenAlex OpenCitations
  42. Christina Nicolaidis , Dora M Raymaker * , Marsha Katz , Mary Oschwald , Rebecca Goe , Sandra M. Leotti et al. (2015). Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities . Progress in Community Health Partnerships: Research, Education, and Action, 9(2), 157-170. Project MUSE.
    Type: Article DOI: 10.1353/cpr.2015.0037 OpenAlex: https://openalex.org/W2110239954
    Crossref OpenAlex OpenCitations
  43. Helen McConachie , Colin Wilson , David Mason , Deborah Garland , Jeremy R. Parr , Alexia Rattazzi et al. (2020). What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries . Autism in Adulthood, 2(1), 4-12. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0008 OpenAlex: https://openalex.org/W2974102439
    Crossref OpenAlex OpenCitations
  44. Cathy Donald Sherbourne , Anita L. Stewart (1991). The MOS social support survey . Social Science & Medicine, 32(6), 705-714. Elsevier BV.
    Type: Article DOI: 10.1016/0277-9536(91)90150-b OpenAlex: https://openalex.org/W2110356839
    Crossref OpenAlex OpenCitations
  45. (s. d.). Kidney CA. Involvement in the online autistic community identity community and well-being. Dissertations and Theses 2012 (Paper 627):10. 15760/etd. 15627. https://pdxscholar.library.pdx.edu/cgi/viewcontent.cgi?article=1626&context=open_access_etds (accessed January29 2020).
    Type: Autre
    Crossref
  46. Laura Platt , Laurie Powers , Sandra M. Leotti , Rosemary B. Hughes , Susan Robinson-Whelen , Sherri Osburn et al. (2017). The Role of Gender in Violence Experienced by Adults With Developmental Disabilities . Journal of Interpersonal Violence, 32(1), 101-129. SAGE Publications.
    Type: Article DOI: 10.1177/0886260515585534 OpenAlex: https://openalex.org/W2273099404
    Crossref OpenAlex OpenCitations
  47. Lillian K. Durán , Alisha K. Wackerle-Hollman , Theresa L. Kohlmeier , Stephanie K. Brunner , Jose Palma , Chase H. Callard (2020). Oral Language Individual Growth and Development Indicators-Español . PsycTESTS Dataset. American Psychological Association (APA).
    Type: Jeu de données DOI: 10.1037/t73068-000 OpenAlex: https://openalex.org/W3042945000
    OpenCitations
  48. (s. d.). Hughes RB Robinson-Wellen S Raymaker D et al. The relationship of interpersonal violence to physical and psychological health in adults with developmental disabilities. Disabil Health. 2019.
    Type: Autre
    Crossref
  49. Vincent J Felitti , Robert F Anda , Dale Nordenberg , David F Williamson , Alison M Spitz , Valerie Edwards et al. (1998). Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults . American Journal of Preventive Medicine, 14(4), 245-258. Elsevier BV.
    Type: Article DOI: 10.1016/s0749-3797(98)00017-8 OpenAlex: https://openalex.org/W2116839388
    Crossref OpenAlex OpenCitations
  50. K R Lorig , D S Sobel , P L Ritter , D Laurent , M Hobbs (2002). Effect of a self-management program on patients with chronic disease. Eff Clin Pract, 4(6), 256.
    Type: Article OpenAlex: https://openalex.org/W2122865756
    Crossref OpenAlex
  51. Raymaker D. (2013). Worlds of autism . Worlds of autism, 169.
    Type: Autre
    Crossref
  52. Christina Nicolaidis , Dora M Raymaker * (2015). Community-based participatory research with communities defined by race, ethnicity, and disability: Translating theory to practice . Dans The SAGE Handbook of Action Research (pp. 167). SAGE Publications Ltd.
    Type: Chapitre de livre DOI: 10.4135/9781473921290.n17 OpenAlex: https://openalex.org/W2585959274
    Crossref OpenAlex OpenCitations
  53. Colleen Kidney (2000). Involvement in the Online Autistic Community, Identity, Community, and Well-Being . Portland State University Library.
    Type: Rapport DOI: 10.15760/etd.627 OpenAlex: https://openalex.org/W2171492380
    OpenAlex
  54. Karen Scott Collins , Dora L. Hughes , Michelle M. Doty , Brett Ives , Jennifer N. Edwards , Katie Tenney (2002). DIVERSE COMMUNITIES, COMMON CONCERNS: ASSESSING HEALTH CARE QUALITY FOR MINORITY AMERICANS FINDINGS FROM THE COMMONWEALTH FUND 2001 HEALTH CARE QUALITY SURVEY . Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans: Findings from the Commonwealth Fund 2001 Health Care Quality Survey.
    Type: Article OpenAlex: https://openalex.org/W2305663879
    Crossref OpenAlex
  55. (s. d.). Nicolaidis C Raymaker D Croen LA et al. Measuring autistic adults' healthcare self-efficacy visit preparedness and use of accommodations. Annual Meeting of the International Society of Autism Research. Montreal Canada May 1–4 2019.
    Type: Autre
    Crossref
  56. Kurt Kroenke , Robert L. Spitzer , Janet B. W. Williams (2002). The PHQ-15: Validity of a New Measure for Evaluating the Severity of Somatic Symptoms . Psychosomatic Medicine, 64(2), 258-266. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/00006842-200203000-00008 OpenAlex: https://openalex.org/W2316878322
    Crossref OpenAlex OpenCitations
  57. Sarah Cassidy , L. Bradley , E. Bowen , Sarah Wigham , Jacqui Rodgers (2018). Measurement properties of tools used to assess suicidality in autistic and general population adults: A systematic review . Clinical Psychology Review, 62, 56-70. Elsevier BV.
    Type: Article DOI: 10.1016/j.cpr.2018.05.002 OpenAlex: https://openalex.org/W2800246475
    Crossref OpenAlex OpenCitations
  58. Helen McConachie , David Mason , Jeremy R. Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the Validity of a Quality of Life Measure for Autistic People . Journal of Autism and Developmental Disorders, 48(5), 1596-1611. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3402-z OpenAlex: https://openalex.org/W2768942203
    Crossref OpenAlex OpenCitations
  59. Sarah Griffiths , Carrie Allison , Rebecca Kenny , Rosemary Holt , Paula Smith , Simon Baron-Cohen (2019). The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults . Autism Research, 12(10), 1516-1528. Wiley.
    Type: Article DOI: 10.1002/aur.2162 OpenAlex: https://openalex.org/W2949176131
    Crossref OpenAlex OpenCitations
  60. Dora M Raymaker * , Christina Nicolaidis (2013). Participatory research with autistic communities: Shifting the system . Worlds of autism: Across the spectrum of neurological difference, 305.
    Type: Article OpenAlex: https://openalex.org/W2468210776
    OpenAlex
  61. Michelle M. Doty , Jennifer N. Edwards (2002). Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans .
    Type: Article OpenAlex: https://openalex.org/W2491612912
    OpenAlex
  62. John R Pleis , Jacqueline W Lucas (2009). Summary health statistics for U.S. adults: National Health Interview Survey, 2007. Vital Health Stat, (240), 1.
    Type: Article OpenAlex: https://openalex.org/W2590410343
    Crossref OpenAlex
  63. Kate Lorig , Anita Stewart , Philip Ritter , Virginia González , Diana Laurent> , John Lynch (1996). Outcome Measures for Health Education and Other Health Care Interventions . SAGE Publications, Inc..
    Type: Livre DOI: 10.4135/9781452232966 OpenAlex: https://openalex.org/W2970972681
    Crossref OpenAlex OpenCitations
  64. (s. d.). CDC. National Health Interview Survey (NHIS)—Adult access to health care & utilization. 2007. http://www.ihis.us/ihis/resources/surveys_pdf/survey_form_ih2007_fam.pdf . Accessed October10 2012.
    Type: Autre
    Crossref
  65. (s. d.). Cantor D Covell J Davis T Park I Rizzo L. Health Information National Trends Survey (HINTS) 2007 final report. 2009; http://hints.cancer.gov/docs/HINTS2007FinalReport.pdf . Accessed May18 2016.
    Type: Autre
    Crossref
  66. BA Israel , A. J. Schulz , EA Parker , A B Becker , AJ Allen , Guzmán et al. (2008). Critical issues in developing and following community based participatory research principles .
    Type: Article OpenAlex: https://openalex.org/W2529138854
    OpenAlex
  67. (s. d.). Kidney CA Raymaker D McDonald K Boisclair C Nicolaidis C. Participation in online communities: Exploring the impact of accessible communication. Paper presented at: Society for Disability Studies 2010 Philadelphia PA.
    Type: Autre
    Crossref
  68. E M Andresen , J A Malmgren , W B Carter , D L Patrick (1994). Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale). PubMed, 10(2), 77-84.
    Type: Article OpenAlex: https://openalex.org/W2613611060
    OpenAlex
  69. Elena M. Andresen , Judith A. Malmgren , William B. Carter , Donald L. Patrick (1994). Screening for Depression in Well Older Adults: Evaluation of a Short Form of the CES-D . American Journal of Preventive Medicine, 10(2), 77-84. Elsevier BV.
    Type: Article DOI: 10.1016/s0749-3797(18)30622-6 OpenAlex: https://openalex.org/W4294185218
    Crossref OpenAlex OpenCitations
  70. D. M. Chavis , K. S. Lee , J. D. Acosta (2014). Sense of Community Index 2 . PsycTESTS Dataset. American Psychological Association (APA).
    Type: Jeu de données DOI: 10.1037/t33090-000 OpenAlex: https://openalex.org/W2816260283
    Crossref
  71. Rosemary B. Hughes , Rosemary B. Hughes , Dora M Raymaker * , Emily M. Lund , Mary Oschwald , Marsha Katz et al. (2019). The relation of abuse to physical and psychological health in adults with developmental disabilities . Disability and Health Journal, 12(2), 227-234. Elsevier BV.
    Type: Article DOI: 10.1016/j.dhjo.2018.09.007 OpenAlex: https://openalex.org/W2909309144
    OpenAlex
  72. (s. d.). Seekins T White G Ravesloot C et al. Issues in disability & health: The role of secondary conditions & quality of life. In: Simeonsson RJ McDevitt LN eds. Issues in disability & health: The role of secondary conditions & quality of life. NC Office on Disability and Health 1999.
    Type: Autre
    Crossref
  73. (s. d.). Weathers FW Litz BT Herman DS Huska JA Keane TM. The PTSD Checklist (PCL): Reliability validity and diagnostic utility. Paper Presented at: 9th Annual Meeting of the International Society for Traumatic Stress Studies San Antonio TX; 1992.
    Type: Autre
    Crossref
  74. Cohen S (1988). The Social Psychology of Health: Claremont Symposium on Applied Social Psychology . The Social Psychology of Health: Claremont Symposium on Applied Social Psychology, 31.
    Type: Autre
    Crossref