Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities

Background Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of...

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Vydáno v:Journal of applied research in intellectual disabilities Ročník 34; číslo 1; s. 250 - 262
Hlavní autoři: Maes, Bea, Nijs, Sara, Vandesande, Sien, Van keer, Ines, Arthur‐Kelly, Michael, Dind, Juliane, Goldbart, Juliet, Petitpierre, Geneviève, Van der Putten, Annette
Médium: Journal Article
Jazyk:angličtina
Vydáno: England Wiley 01.01.2021
Wiley Subscription Services, Inc
Témata:
Barriers
Data Analysis
Data Collection
Ethics
future directions
Human subjects
Intellectual disabilities
Medical research
methodological challenges
Multiple Disabilities
PIMD
PMLD
profound and multiple learning disabilities
profound intellectual and multiple disabilities
Research Methodology
Sampling
Severe Intellectual Disability
PMLD
future directions
methodological challenges
profound intellectual and multiple disabilities
profound and multiple learning disabilities
PIMD
ISSN:1360-2322, 1468-3148, 1468-3148
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Shrnutí:Background Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. Methods The challenges are centred on six topics. These reflect the main components of a study's design: (a) participant demarcation, (b) participant recruitment, (c) data collection and instruments, (d) data analysis, (e) ethics/including the “voice” of persons with PIMD and (f) theoretical models. Results Next, to describing the specific challenges, possible solutions and pathways to address them are discussed. These are illustrated by recent studies by the authors and other researchers in the field. Conclusions The current contribution wants to stimulate further discussion and exchange of ideas, and the development of creative research techniques.
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ISSN:1360-2322
1468-3148
1468-3148
DOI:10.1111/jar.12803