Background: Chronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals. Aim: This Delphi study aims to compile a list of operationalized criteria and symptoms of constipation in people with SPIMD based on practical experiences of and consensus between experts supporting them. Methods: A two-round Delphi study with an intermediate evaluation and analyses was conducted. Parents and relatives of persons with SPIMD and support professionals were included. The panel answered statements and open questions about symptoms and criteria of constipation. They were also requested to provide their opinion about classifying criteria and symptoms into domains. Answers to statements were analysed separately after both rounds with regard to consensus rate and displayed qualitatively; answers to open questions were analysed deductively. Results: In the first Delphi round (n = 47), consensus was achieved on criteria within the domains 'Defecation’ and 'Physical features', that were assigned to broader categories. Symptoms retrieved within the domain ‘Behavioural/Emotional’ were brought back to the panel as statements. After the second Delphi round (n = 38), consensus was reached on questions about domains, and for eight criteria (domain ‘Defecation’ n = 5; domain ‘Physical features n = 3). Within the domain ‘Behavioural/Emotional’, consensus was achieved for five symptoms. Criteria and symptoms with consensus >70% were considered ‘generic’ and
BACKGROUND: It is difficult to diagnose constipation for people with severe or profound intellectual disabilities. Definitions for this are ambiguous, and the symptoms and signs are often unnoticed. The aim of this study is to identify clear definitions of constipation for people with different levels of intellectual disabilities and to identify signs and symptoms.METHOD: Guided by the PRISMA statement, a systematic review of the literature was conducted within electronic databases MEDLINE, Embase, CINAHL, Cochrane, and PsycINFO. Definitions, signs, and symptoms were extracted and the quality of definitions was assessed.RESULTS: In total, 24 studies were included. Quality of definitions ranged from poor to good quality. Standard and referenced definitions were used in ten studies, a self-composed definition was employed in eleven studies; and three studies did not refer to a source of the definition. The self-composed definitions had not been evaluated after being used for the target group, and no scientific substantiation was available. A broad range of signs and symptoms were described.CONCLUSIONS: No substantiated definition has been ascertained for constipation for people with severe or profound intellectual disabilities. Further research will be necessary to identify which signs and symptoms are important for defining constipation in this target group.
Werkboek 5 uit de reeks "Eigen Regie en Herstel" gaat over de voor- en nadelen van de effecten van medicijngebruik. Het Steun-Stress Kracht-Kwetsbaarheidsmodel welke factoren invloed hebben op het ontstaan van psychische klachten. Stress en kwetsbaarheid vergroten het risico op klachten. Medicatie kan de symptomen van psychische stoornissen onderdrukken. Als de klachten minder worden, neemt de ruimte voor herstel toe. Deze publicatie is een bewerkte, geautoriseerde vertaling van “Illness management and recovery: Personalized skills and strategies for those with mental illness” van Gingerich, S., Mueser, K. T., & New Hampshire-Dartmouth Psychiatric Research Center (2011). ISBN: 978-1616491062 Uitgever: Hazelden Foundation, Center City, MN 55012, USA.Nederlandse vertalingLaura Stalenhoef (Saxion, student TP)Marijke Brugman (Saxion; Netwerk IMR)Rieke Kamman (Dimence Groep)Grietje Meinen (RIBW Groep Overijssel; Netwerk IMR)Redactie/EditorAd Bergsma (Saxion Hogeschool)Hanneke Teunissen (Saxion Hogeschool)BewerkingAd Bergsma (Saxion Hogeschool)Ingrid Stevelmans (GGzE)Marijke Brugman (Saxion Hogeschool)Trudy Sterk (Zorggroep Apeldoorn en omstreken)Titus Beentjes (Dimence Groep)Jos Droës (Stichting Rehabilitatie '92)Petra Schaftenaar (Inforsa)Peter Pierik (Saxion Hogeschool)Kim Mueser (Department of Occupational Therapy, Boston University)Susan Gingerich (Independent Consultant, Philadelphia, PA, United States)IllustratiesIris de Rooij
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