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

• Published in: Journal of applied research in intellectual disabilities Vol. 34; no. 1; pp. 250 - 262
• Main Authors: Maes, Bea, Nijs, Sara, Vandesande, Sien, Van keer, Ines, Arthur‐Kelly, Michael, Dind, Juliane, Goldbart, Juliet, Petitpierre, Geneviève, Van der Putten, Annette
• Format: Journal Article
• Language: English
• Published: England Wiley 01.01.2021; Wiley Subscription Services, Inc
• Subjects: 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
• DOI: 10.1111/jar.12803

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.