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Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families.
McKinney, Ailbhe; Weisblatt, Emma Jl; Hotson, Kathryn L; Bilal Ahmed, Zahra; Dias, Claudia; BenShalom, Dorit; Foster, Juliet; Murphy, Suzanne; Villar, Sofía S; Belmonte, Matthew K.
Afiliación
  • McKinney A; Nottingham Trent University, UK.
  • Weisblatt EJ; The University of Edinburgh, UK.
  • Hotson KL; University of Cambridge, UK.
  • Bilal Ahmed Z; Cambridgeshire and Peterborough NHS Foundation Trust, UK.
  • Dias C; Nottingham Trent University, UK.
  • BenShalom D; Nottingham Trent University, UK.
  • Foster J; Cambridgeshire and Peterborough NHS Foundation Trust, UK.
  • Murphy S; Ben Gurion University of the Negev, Israel.
  • Villar SS; King's College London, UK.
  • Belmonte MK; University of Bedfordshire, UK.
Autism ; 25(6): 1627-1639, 2021 08.
Article en En | MEDLINE | ID: mdl-33827289
LAY ABSTRACT: Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trastorno Autístico / Trastorno del Espectro Autista / Discapacidad Intelectual Tipo de estudio: Guideline Límite: Child / Humans Idioma: En Revista: Autism Asunto de la revista: PSICOLOGIA / PSIQUIATRIA Año: 2021 Tipo del documento: Article Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
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XML
PubMed Links
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trastorno Autístico / Trastorno del Espectro Autista / Discapacidad Intelectual Tipo de estudio: Guideline Límite: Child / Humans Idioma: En Revista: Autism Asunto de la revista: PSICOLOGIA / PSIQUIATRIA Año: 2021 Tipo del documento: Article Pais de publicación: Reino Unido