Carla Vlaskamp

Frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities

The main goals of this study were to determine the prevalence, frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities (PIMD). Because in the literature several health problems and sensory impairments are associated with the onset and existence of challenging behaviour, this relationship was also examined. This study involved 181 people with PIMD (age: mean: 35; SD: 19, 56% male). The Behaviour Problem Inventory was used to determine prevalence, frequency and severity of self-injurious (SIB), stereotypical and aggressive/destructive behaviour, and an additional questionnaire was used to determine the presence of sensory impairments and health problems among the participants. Results show a prevalence of 82% for SIB and stereotypical behaviour in the sample. Aggressive/destructive behaviour was seen in 45% of the participants. Concerning the frequency, on average SIB occurs on a daily or weekly basis. Stereotypical behaviour is seen on a daily basis and aggressive/destructive behaviour is usually reported once a week. All three types of challenging behaviour also occur on an hourly basis. The severity of challenging behaviour is usually rated by staff as of minor consequence for the person with PIMD. Furthermore, a relationship was found between having visual, tactile or psychiatric problems and the occurrence of challenging behaviour. Participants with visual impairments, tactile impairments or psychiatric problems showed significantly higher mean scores regarding challenging behaviour. Challenging behaviour within the target group of people with PIMD is very common. The prevalence figures are high, but direct support professionals are not inclined to rate such behaviour as of serious consequence.

Alertness in individuals with profound intellectual and multiple disabilities: A literature review

Direct support persons (DSPs) often face problems in observing and determining alertness in individuals with profound intellectual and multiple disabilities (PIMD). A literature study was carried out to gather information about the problems just described. A search of two electronic databases and the references found in relevant hits revealed 42 relevant publications. The results show that two types of descriptions of alertness can be distinguished: (1) those with a focus on the individual only or (2) those with a focus on the interaction of individual and environment. Several observation categories were used in the studies that were found. The reliability of the observations turned out to be a core problem in most of the studies. Only a limited number of environmental conditions that were expected to have an impact on alertness in individuals with PIMD were investigated. While modifications of the environment, interaction strategies, stimulation strategies and staff training were found to have a positive impact on alertness, studies about treatment activities led to conflicting results. Finally, we will formulate the resulting implications for future studies and for the development of an instrument for DSPs in order to observe alertness in individuals with PIMD in clinical practice.

Joining Forces: Supporting Individuals with Profound Multiple Learning Disabilities

Since 1999, one of the Special Interest Research Groups within the International Association for the Scientific Study of Intellectual Disabilities (IASSID) has been on profound multiple disabilities (PMD). This group has stimulated a world‐wide discussion on education and support for such individuals. However, it is evident that there is some disagreement about who is included in this category. There has also been a debate about the applicability of various policy changes for people with PMD. A third topic of discussion has been the need for more research related to this target group and the related research priorities. This paper profiles and discusses these questions.

Measuring the Quality of Life of People with Profound Multiple Disabilities Using the QOL-PMD: First Results.

The present study focused on the objective components of quality of life (QOL) of people with profound multiple disabilities (PMD). More specific, we aimed at evaluating different dimensions of QOL of people with PMD and investigating the association between their QOL and several personal (age, gender, intellectual capabilities, motor limitations, sensory limitations, physical and mental health status) as well as setting characteristics (location of the setting, type of setting, size of the setting, group size, group composition, staffing level and staff turnover). As a measure of the QOL of people with PMD we used the QOL-PMD, a questionnaire that we specifically developed for this purpose. To measure the personal and setting characteristics we also used a self-developed questionnaire. Forty-nine people with PMD were selected. For each of these people three informants were chosen who each filled out the QOL-PMD. To account for the clustered nature of the data, data were analysed by means of mixed models. Characteristics regarding the medical condition of the person with PMD turned out to be most strongly associated with the QOL-PMD scores. Other personal characteristics such as age, gender, motor limitations and sensory limitations did not have a significant effect on the QOL-PMD scores. With regard to the setting characteristics, location of the setting and staffing level turned out to have a significant effect on the QOL-PMD scores.

LEARN 2 MOVE 0-2 years: effects of a new intervention program in infants at very high risk for cerebral palsy; a randomized controlled trial.

BackgroundIt is widely accepted that infants at risk for cerebral palsy need paediatric physiotherapy. However, there is little evidence for the efficacy of physiotherapeutic intervention. Recently, a new intervention program, COPCA (Coping with and Caring for infants with special needs - a family centered program), was developed. COPCA has educational and motor goals. A previous study indicated that the COPCA-approach is associated with better developmental outcomes for infants at high risk for developmental disorders. LEARN 2 MOVE 0-2 years evaluates the efficacy and the working mechanisms of the COPCA program in infants at very high risk for cerebral palsy in comparison to the efficacy of traditional infant physiotherapy in a randomized controlled trial. The objective is to evaluate the effects of both intervention programs on motor, cognitive and daily functioning of the child and the family and to get insight in the working elements of early intervention methods.Methods/designInfants are included at the corrected age of 1 to 9 months and randomized into a group receiving COPCA and a group receiving traditional infant physiotherapy. Both interventions are given once a week during one year. Measurements are performed at baseline, during and after the intervention period and at the corrected age of 21 months. Primary outcome of the study is the Infant Motor Profile, a qualitative evaluation instrument of motor behaviour in infancy. Secondary measurements focus on activities and participation, body functions and structures, family functioning, quality of life and working mechanisms. To cope with the heterogeneity in physiotherapy, physiotherapeutic sessions are video-recorded three times (baseline, after 6 months and at the end of the intervention period). Physiotherapeutic actions will be quantified and related to outcome.DiscussionLEARN 2 MOVE 0-2 years evaluates and explores the effects of COPCA and TIP. Whatever the outcome of the project, it will improve our understanding of early intervention in children with cerebral palsy. Such knowledge is a prerequisite for tailor-made guidance of children with CP and their families.Trial registrationThe trial is registered under NTR1428.

Children with profound intellectual and multiple disabilities: the effects of functional movement activities

Objective: To determine the effect of functional movement activities within the MOVE (Mobility Opportunities Via Education) curriculum on the independence of children with profound intellectual and multiple disabilities. Subjects: Forty-four children with profound intellectual and multiple disabilities. Setting: Centres for special education. Design: A quasi-experimental pretest–posttest with control group design. Intervention: The children in the control group (n = 12) participated in the regular programme at the centre of special education. The children within the experimental group (n = 32) were additionally supported by the MOVE curriculum. Method: Both group comparisons and individual analyses were conducted. Results: The level of independence of the experimental group increased significantly in performing movement skills; the control group did not increase significantly. At an individual level, 20 children (63%) of the experimental group improved in comparison with the control group, in which four children (33%) improved. Conclusion: Results showed that the children receiving functionally focused activities achieved the greatest improvements in independence when performing movement activities.

A systematic review of the effects of motor interventions to improve motor, cognitive, and/or social functioning in people with severe or profound intellectual disabilities

While it is generally agreed that motor activity promotes motor, cognitive, and social development, the specific benefits in people with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to motor interventions designed to improve motor, cognitive, and/or social outcomes in people with S-PID. A systematic review of empirical studies published between 1982 and 2012 was conducted using four databases (MEDLINE, PsycINFO, ERIC, and CINAHL). Data were extracted regarding the aim of the study, study design, sample characteristics, theoretical framework, intervention, the measurement tools utilized, and outcomes. Of 295 articles reviewed, 46 met our inclusion criteria and covered 45 different studies. Forty articles used single-subject designs and five used a group design. The majority of the articles focused on behavioural techniques with (n=21) or without (n=15) assistive technology. Theoretical frameworks were explicitly reported in nine (20%) of the 45 articles. Thirty-eight articles reported improvement in basic motor skills and eight articles reported improvement in recreational or more specialist motor skills. None of the articles reported negative effects due to motor interventions. Further research is required to determine which motor interventions are the most effective in improving motor outcomes and/or cognitive and social outcomes, and on the longer term effects of these interventions in people with S-PID.

Psychometric evaluation of a questionnaire to measure the quality of life of people with profound multiple disabilities (QOL-PMD).

Because of a shortage of valid instruments to measure the QOL of people with profound multiple disabilities (PMD), the QOL-PMD was developed. In the present study, possibilities for item reduction as well as the psychometric properties of the questionnaire were examined. One hundred and forty-seven informants of people with PMD participated in the study. Fifty items were removed from the questionnaire on the basis of preset criteria. Internal consistency was good for the total questionnaire as well as for the subscales. Evidence of the construct validity of the questionnaire was found. Correspondence between the groups of informants was moderate. The results of this preliminary analysis of the psychometric properties of the QOL-PMD are encouraging, but further validation of the measure is warranted.

Multi-Sensory Storytelling for Persons with Profound Intellectual and Multiple Disabilities: An Analysis of the Development, Content and Application in Practice.

BACKGROUND Multi-sensory storytelling (MSST) books are individualized stories, which involve sensory stimulation in addition to verbal text. Despite the frequent use of MSST in practice, little research is conducted into its structure, content and effectiveness. This study aims at the analysis of the development, content and application in practice of the MSST books in persons with profound intellectual and multiple disabilities (PIMD). MATERIALS AND METHODS Forty-nine persons with PIMD and their direct support person participated. We analysed if the books are constructed and read according to guidelines. Content and used stimuli were related to age. RESULTS Of the books 84% were constructed according to guidelines. In just 1.3% of the sessions, the story was read as intended. Regarding content, 67.4% of the stories focused on daily life excursions. Tactile stimuli were used most. Age related to stimuli choice, but not to content. CONCLUSIONS Although most books were properly constructed, guidelines were barely followed during reading which may negatively influence the effectiveness.

The documentation of health problems in relation to prescribed medication in people with profound intellectual and multiple disabilities.

BACKGROUND Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed. METHOD Persons with PIMD with an estimated intelligence quotient of 25 and profound or severe motor disorders were studied. Data on health problems were taken from medical notes and prescribing data were obtained from pharmacies. Data covering 1 year were analysed. For four therapeutic areas (anticonvulsants, laxatives, drugs for peptic ulcer and gastro-oesophageal reflux disease and psycholeptics), we determined whether we could find an indication for prescribed medication. RESULTS Some 254 persons with PIMD (46% male, 54% female; median age 49 years, range 6-82) from eight residential facilities participated. Some 226 participants (89%) were prescribed medication over the course of 1 year. An indication for the prescribed medication was documented for 92% (n = 130) (95% confidence interval 88-96%) of 141 participants on anticonvulsants, for 68% (n = 112) (61-75%) of 165 participants on laxatives, for 44% (n = 58) (36-52%) of 132 participants on drugs for peptic ulcer and gastro-oesophageal reflux disease, and for 89% (n = 102) (83-95%) of 115 participants on psycholeptic drugs. CONCLUSIONS The best level of documentation was found for anticonvulsants the worst for drugs for peptic ulcer and gastro-oesophageal reflux disease. Lack of documenting an indication may be due to off-label use, inadvertent continuation of no longer indicated medication, inadequate documentation and underdiagnosis. Adequate documentation practices are essential because of the communication problems that are characteristic for persons with PIMD.