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Wiley, Journal of Applied Research in Intellectual Disabilities, 3(36), p. 653-663, 2023

DOI: 10.1111/jar.13089

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Reliable assessment of pain behaviour in adults with profound intellectual and multiple disabilities: The development of an instruction protocol

Journal article published in 2023 by Annemieke Enninga ORCID, Aly Waninge ORCID, Wendy J. Post ORCID, Annette A. J. van der Putten ORCID
This paper was not found in any repository, but could be made available legally by the author.
This paper was not found in any repository, but could be made available legally by the author.

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Abstract

AbstractBackgroundPersons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain‐related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD.MethodsWe developed an instruction protocol for the assessment of pain‐related behaviour in four phases. We used videos of 57 adults with PIMD during potentially painful situations. The items were assessed for inter‐rater reliability (Cohen's kappa or percentage of agreement).ResultsThe developed instruction protocol appeared to be adequate. Twelve items had satisfactory inter‐rater reliability (n = 9: .30–1.00; n = 3: 85%–100%).DiscussionCalibrating and adjustments to the instructions and item set appeared to be crucial to reliably score 12 items in adults with PIMD. Further research should focus on creating an assessment instrument based on these reliably scored items.