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.
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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
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IntroductionObservable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.MethodsCare professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix.ResultsSurvey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported.ConclusionIncreased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.
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BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans.METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded.RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux.CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.
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Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
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Background Anxiety and challenging behaviour (CB) often occur simultaneously in people with intellectual disabilities (ID). Understanding the associations between anxiety and CB may contribute to more accurate diagnoses and management of both anxiety and CB in this population. Aims To examine the relationship between anxiety and CB. Methods A literature review covering the period from January 2000 to January 2012. Results Seven studies about the relationship between psychiatric disorders, including anxiety, and CB were identified. These studies confirm the relationship between anxiety and CB in people with ID, although the precise nature of this relationship remains unclear. Conclusions The study points toward the existence of a moderate association between anxiety and CB. Further research is needed to clarify the complex nature of the association between anxiety and CB.
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PURPOSE: To test if a collaborative care program (CCP) with nurses in a coordinating position is beneficial for patients with severe personality disorders. DESIGN AND METHODS: A pilot study with a comparative multiple case study design using mixed methods investigating active ingredients and preliminary results. FINDINGS: Most patients, their informal caregivers, and nurses value (parts of) the CCP positively; preliminary results show a significant decrease in severity of borderline symptoms. PRACTICE IMPLICATIONS: With the CCP,we may expand the supply of available treatments for patients with (severe) personality disorders, but a larger randomized controlled trial is warranted to confirmour preliminary results.
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Inleiding: Bij mensen met verstandelijke beperkingen (VB) is obstipatie een van de meest voorkomende gezondheidsproblemen en de gevolgen kunnen groot zijn. Dit onderzoek beoogt een overzicht te geven van de prevalentie van, risicofactoren voor en (niet-)medicamenteuze behandeling van obstipatie bij mensen met VB. Daarnaast wordt de relatie tussen obstipatie, dysfagie en medicatie geanalyseerd.Methode: Het onderzoek bestond uit literatuur- en dossieronderzoek. Voor het systematische literatuuronderzoek werden de databases PubMed en Scopus doorzocht. Het dwarsdoorsnede (cross-sectionele) dossieronderzoek werd uitgevoerd bij zorginstelling Alliade. Data over aanwezigheid van obstipatie, laxantiagebruik, inzet van niet-medicamenteuze behandelingen en risicofactoren, waaronder dysfagie en medicatiegebruik, werden verzameld.Resultaten: De literatuur toonde sterk variërende obstipatie-prevalenties van 6 tot 94%. Het dossieronderzoek liet zien dat 24,3% van de cliënten een obstipatiediagnose heeft en 55% chronisch laxantia gebruikt. Risicofactoren voor obstipatie werden in de literatuur weinig gevonden. Risicofactoren gevonden in de dossiers waren mate VB, dysfagie en medicatie. Niet-medicamenteuze behandelingen voor obstipatie werden zelden gerapporteerd en betroffen fysiotherapeutische behandelingen, buikmassage en voedingssupplementen. Conclusie: De prevalentie van obstipatie en chronisch laxantiagebruik bleek hoog. Er is nog veel onduidelijk over risicofactoren en over de inzet van alternatieve behandelmethoden naast laxantia. Gezien de grote impact die obstipatie kan hebben op mensen met VB is verder onderzoek naar deze aandoening en de behandelmethoden wenselijk.
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In het herstellen en behouden van zinvolle bezigheden voor mensen met een lichte of matige vorm van van de ziekte van Alzheimer is doelstelling van groot praktisch belang. De studies gericht op dit doel hebben vertrouwd op de verschillende strategieën van zelfmanagement van instruction cues. Zeven studies werden gevonden die plaats hadden in de periode 2008-2012 (dat wil zeggen, de periode waarin onderzoek op dit gebied daadwerkelijk vorm heeft gekregen). Die strategieën bestaan uit het gebruik van (1) verbale signalen aangeboden via audiorecorders, (2) visuele signalen aangeboden via computersystemen, en (3) een combinatie van verbale en visuele signalen gepresenteerd via computersystemen. Dit artikel geeft een overzicht van de hiervoor genoemde strategieën en bespreekt de resultaten daarvan, hun algemene doeltreffendheid, op prestaties en stemmingen, en hun geschiktheid en bruikbaarheid. Thema's voor toekomstig onderzoek werden eveneens onderzocht. ABSTRACT Helping people with mild or moderate Alzheimer's disease restore and maintain constructive occupations is an objective of great practical importance. Studies targeting this goal have relied on different strategies for self-management of instruction cues. Seven studies were identified in the period 2008- 2012 (i.e. the period in which research in this area has actually taken shape). These strategies consist of the use of (1) verbal cues presented via audio recording devices, (2) pictorial cues presented via computer-aided systems and (3) combinations of verbal and pictorial cues presented via computer-aided systems. This paper reviews these strategies and discusses their outcomes, their overall effectiveness on performance and mood, and their suitability and practicality. Issues for future research are also examined.
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Research showed that more than 30% of patients with Posttraumatic Stress Disorder (PTSD) do not benefit from evidence- based treatments: Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) or Eye Movement Desensitization and Reprocessing (EMDR). These are patients with prolonged and multiple traumatization, with poor verbal memory, and patients with emotional over-modulation. Retelling traumatic experiences in detail is poorly tolerated by these patients and might be a reason for not starting or not completing the recommended treatments. Due to lack of evidence, no alternative treatments are recommended yet. Art therapy may offer an alternative and suitable treatment, because the nonverbal and experiential character of art therapy appears to be an appropriate approach to the often wordless and visual nature of traumatic memories. The objective of this pilot study was to test the acceptability, feasibility, and applicability of trauma-focused art therapy for adults with PTSD due to multiple and prolonged traumatization (patients with early childhood traumatization and refugees from different cultures). Another objective was to identify the preliminary effectiveness of art therapy. Results showed willingness to participate and adherence to treatment of patients. Therapists considered trauma-focused art therapy feasible and applicable and patients reported beneficial effects, such as more relaxation, externalization of memories and emotions into artwork, less intrusive thoughts of traumatic experiences and more confidence in the future. The preliminary findings on PTSD symptom severity showed a decrease of symptoms in some participants, and an increase of symptoms in other participants. Further research into the effectiveness of art therapy and PTSD is needed.
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