{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T00:21:55Z","timestamp":1791591715670,"version":"4.3.4"},"reference-count":113,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2020,10,18]],"date-time":"2020-10-18T00:00:00Z","timestamp":1602979200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Research Intellect Disabil"],"published-print":{"date-parts":[[2021,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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 \u201cvoice\u201d of persons with PIMD and (f) theoretical models.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The current contribution wants to stimulate further discussion and exchange of ideas, and the development of creative research techniques.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jar.12803","type":"journal-article","created":{"date-parts":[[2020,10,18]],"date-time":"2020-10-18T23:45:46Z","timestamp":1603064746000},"page":"250-262","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":129,"title":["Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities"],"prefix":"10.1111","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5011-1134","authenticated-orcid":false,"given":"Bea","family":"Maes","sequence":"first","affiliation":[{"name":"Faculty of Psychology and Educational Sciences, Research Unit Parenting and Special Education Catholic University of Leuven Leuven Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6672-1009","authenticated-orcid":false,"given":"Sara","family":"Nijs","sequence":"additional","affiliation":[{"name":"Faculty of Psychology and Educational Sciences, Research Unit Parenting and Special Education Catholic University of Leuven Leuven Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4896-4370","authenticated-orcid":false,"given":"Sien","family":"Vandesande","sequence":"additional","affiliation":[{"name":"Faculty of Psychology and Educational Sciences, Research Unit Parenting and Special Education Catholic University of Leuven Leuven Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7848-1276","authenticated-orcid":false,"given":"Ines","family":"Van keer","sequence":"additional","affiliation":[{"name":"Faculty of Psychology and Educational Sciences, Research Unit Parenting and Special Education Catholic University of Leuven Leuven Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2975-344X","authenticated-orcid":false,"given":"Michael","family":"Arthur\u2010Kelly","sequence":"additional","affiliation":[{"name":"School of education University of Newcastle Callaghan NSW Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8378-5944","authenticated-orcid":false,"given":"Juliane","family":"Dind","sequence":"additional","affiliation":[{"name":"D\u00e9partement de P\u00e9dagogie sp\u00e9cialis\u00e9e Universit\u00e9 de Fribourg Fribourg Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1290-7833","authenticated-orcid":false,"given":"Juliet","family":"Goldbart","sequence":"additional","affiliation":[{"name":"Faculty of Health, Psychology &amp; Social Care Manchester Metropolitan University Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Genevi\u00e8ve","family":"Petitpierre","sequence":"additional","affiliation":[{"name":"D\u00e9partement de P\u00e9dagogie sp\u00e9cialis\u00e9e Universit\u00e9 de Fribourg Fribourg Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annette","family":"Van der Putten","sequence":"additional","affiliation":[{"name":"Faculty of Behavioural and Social Sciences University of Groningen Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,10,18]]},"reference":[{"key":"e_1_2_9_2_1","unstructured":"Academic Collaborative Center related to people with profound intellectual and multiple disabilities. 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