Caregiver Perspectives on Pain Sensitivity and Pain Experience in Rett Syndrome.

Autor: Byiers BJ; Department of Educational Psychology, University of Minnesota, Minneapolis, Minnesota, USA., Merbler AM; Department of Educational Psychology, University of Minnesota, Minneapolis, Minnesota, USA., Raiter A; Gillette Children's, St. Paul, Minnesota, USA., Burkitt CC; Gillette Children's, St. Paul, Minnesota, USA., Symons FJ; Department of Educational Psychology, University of Minnesota, Minneapolis, Minnesota, USA.
Jazyk: angličtina
Zdroj: Canadian journal of pain = Revue canadienne de la douleur [Can J Pain] 2023 Jul 28; Vol. 7 (1), pp. 2229400. Date of Electronic Publication: 2023 Jul 28 (Print Publication: 2023).
DOI: 10.1080/24740527.2023.2229400
Abstrakt: Background: Although delayed or decreased responses to pain are commonly reported among caregivers of individuals with Rett syndrome (RTT), previous studies in relatively small samples have documented that caregivers are concerned about pain, particularly due to gastrointestinal and musculoskeletal conditions.
Aims: The purpose of the current study was to investigate in detail caregivers' perceptions of pain sensitivity, as well as the types, severity, and effect of pain experienced by individuals with RTT in a larger sample than previous studies.
Methods: A total of 51 caregivers (mostly mothers) participated in the study, which involved standardized questionnaires and interviews. The individuals with RTT ranged in age from 2 to 52 years of age, and most ( n = 46; 90%) met criteria for classic RTT.
Results: Across the sample, 84% of caregivers reported that they believed that their child was less sensitive to pain compared to her typically developing peers. Despite this perception, 63% of caregivers reported that their child had experienced at least one form of pain in the previous 7 days, and 57% reported their child experienced at least one form of chronic pain. On average, caregivers reported that their child's pain was of moderate severity and interfered with at least one activity of daily living.
Conclusions: The results suggest that pain is a substantial concern among caregivers of individuals with RTT and indicate that additional research is needed to understand the apparent paradox of frequently reported pain experiences despite widespread perceptions of decreased pain sensitivity.
Competing Interests: BJB is currently receiving a grant from the Eunice Kennedy Shriver NICHD (No. R21HD101075). CCB is currently receiving a grant from Eunice Kennedy Shriver NICHD (No. R01HD108406). FJS is currently receiving grants from the Eunice Kennedy Shriver NICHD (Nos. R01HD44763 and R01HD102552). AMM and AR do not have any conflicts of interest.
(© 2023 The Author(s). Published with license by Taylor & Francis Group, LLC.)
Databáze: MEDLINE
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