A.A.J. Van der Putten

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.

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.

Movement skill assessment in children with profound multiple disabilities: a psychometric analysis of the Top Down Motor Milestone Test

Objective: To analyse the psychometric properties of the Top Down Motor Milestone Test (TDMMT), an internationally used instrument in the planning and evaluation of movement-oriented interventions. Setting: Centres for special education in the Netherlands. Subjects: Children with profound multiple disabilities. Methods: Validity, reliability and utility of the TDMMT were evaluated. Validity was assessed by conducting a principal component analysis. Reliability was determined by evaluating the internal consistency, test=retest and inter-rater reliability. With regard to utility, the hierarchical item ordering was evaluated with a Mokken scale analysis. Inter-item and item-rest correlations were calculated to confirm the allocation of the items in the TDMMT. Results: Principal component analysis did not support the presence of three underlying factors. The internal consistency was high and test=retest and inter-rater reliability varied from moderate to perfect. Scale analysis showed that the subscales of the TDMMT are strong one-dimensional scales with good internal consistency, however, the order of the items could only partly be confirmed as well as the allocation of the items into four levels of functioning. Conclusion: The reliability of the TDMMT is good, but validity is moderate. Results indicate that adaptations to the structure of the TDMMT should be made when used for children with profound multiple disabilities. Further psychometric evaluation of the TDMMT is necessary.

The Structure of Informal Social Networks of Persons with Profound Intellectual and Multiple Disabilities

BACKGROUND Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. MATERIALS AND METHODS Data concerning the number, type and frequency of contacts were collected in 205 persons with PIMD. RESULTS The mean number of contact persons was 5.1 (range: 0-26, SD: 4.2) per year. 79.4% of the contact persons are family, with an average of 72.3 contacts per year. Parents had significantly more contact compared to the other informal contact persons. In 2.2% of the sample contacts with peers were seen. CONCLUSIONS The informal networks of persons with PIMD consist mainly of family. The question arises how informal networks can be expanded and which role professionals have in this process.

Prevalence of reported physical health problems in people with severe or profound intellectual and motor disabilities: a cross-sectional study of medical records and care plans

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.

Informal Social Networks of People with Profound Intellectual and Multiple Disabilities: Relationship with Age, Communicative Abilities and Current Living Arrangements

BACKGROUND People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. MATERIALS AND METHODS Regression analysis for 200 people with PIMD was used to analyse how age, communicative abilities and current living arrangements were related to the number and frequency of their contacts. RESULTS Only age was negatively related to both the number and frequency of social contacts. Current living arrangements related only to the frequency of contacts. Communicative abilities related to neither. CONCLUSIONS Like people with intellectual disabilities, age and living arrangements are related to the informal social networks of people with PIMD. However, for people with PIMD, these networks are already more limited. Therefore, professionals need to be attentive to the maintenance and/or expansion of the social networks of people with PIMD at an early stage.

Staff attributions of the causes of challenging behaviour in children and adults with profound intellectual and multiple disabilities

A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give for challenging behaviour in this group. The purpose of this study was twofold: (1) to determine the way staff attribute challenging behaviour in children and adults with PIMD; and (2) to analyse whether more experienced staff attribute challenging behaviour in children and adults with PIMD differently than less experienced staff. In total, 195 direct support staff and an equal number of children and adults with PIMD participated in the study. Direct support staff filled out the Challenging behaviour Attribution Scale (five causal explanatory models of challenging behaviour) to explain challenging behaviour in one individual that they supported. The results show that direct support staff as a whole report the biomedical model as the most plausible explanation for challenging behaviour in children and adults with PIMD. However, in the present study the mean scores on all models are low. This might indicate that a large number of staff found none of the models particularly useful as possible explanations of challenging behaviour in people with PIMD. This could mean that staff have difficulties stating the cause of challenging behaviour in this group. Another possible explanation could be that there is little scientific knowledge about causing and maintaining factors of challenging behaviour in people with PIMD. It could also mean that staff have additional explanations for challenging behaviour in this target group that are not mentioned in the instrument used. Future research should address these issues. No differences were found between more experienced and less experienced direct support staff.

Patterns of multimorbidity in people with severe or profound intellectual and motor disabilities

BACKGROUND People with severe or profound intellectual and motor disabilities (SPIMD) experience multimorbidity and have complex health needs. Multimorbidity increases mortality, decreases functioning, and negatively influences quality of life. Information regarding patterns of multimorbidity in people with SPIMD may lead to proactive prevention, specifically detection and treatment of physical health problems at an early stage and prevention of secondary complications. AIM The aim of this study was to explore patterns of multimorbidity in individuals with SPIMD. METHODS AND PROCEDURES Data from medical records and care plans on reported physical health problems of 99 adults with SPIMD were analysed. To explore the co-occurrence of physical health problems, cross tabulations and a 5-set Venn Diagram were used. OUTCOMES AND RESULTS The most common combination of two physical health problems comprise the most prevalent physical health problems, which included visual impairment, constipation, epilepsy, spasticity, and scoliosis. These five issues occurred as a multimorbidity combination in 37% of the participants. In 56% of the participants a multimorbidity combination of four health problems emerged, namely constipation, visual impairment, epilepsy, and spasticity. CONCLUSIONS AND IMPLICATIONS People experiencing SPIMD have interrelated health problems. As a consequence, a broad variety of potential interactions between physical health problems and their treatments may occur. Identifying multimorbidity patterns can provide guidance for accurate monitoring of persistent health problems and, early detection of secondary complications. However, the results require confirmation with larger samples in further studies.

Exploring spontaneous interactions between people with profound intellectual and multiple disabilities and their peers

ABSTRACT Background Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions between persons with PIMD and the possibilities provided by DSPs related to physical positioning. Method Observational data were obtained from 14 people with PIMD for three consecutive hours in a non-controlled situation. Results Of all 213 observed interactions, 5.1% were with peers, 73.4% with DSPs, 14.9% with the observer, and 6.5% with others. In 61.3% of the observed timeframes, the participants with PIMD were positioned in a way that made it impossible to touch or/and to look at a peer. Conclusion Generally, the observed positioning of the participants made contacts between peers nearly impossible. DSPs should create optimal conditions for interaction between peers.

Assessment of temperament in children with profound intellectual and multiple disabilities. A pilot study into the role of motor disabilities in instruments to measure temperament1

Abstract Research on temperament has evolved substantially throughout the last years. Assessing temperament in a child gives information about why the child reacts differently in different situations and can be seen as one of the variables playing a role in determining adaptive and maladaptive outcomes. Insight into the temperament of the child, therefore, facilitates the adaptation of support or child-rearing practices to the specific needs and wishes of the child. The current study aimed at reviewing existing temperament instruments among young children with profound intellectual and multiple disabilities (PIMD). An inventory of the existing instruments, which can determine temperament, was made based on a literature review. A total of 138 articles were found in which temperament was measured. None of these studies included children with PIMD. The Infant Behavior Questionnaire-Revised (IBQ-R) very short form and the Child Behavior Questionnaire (CBQ) very short form seem to be the most appropriate forms to measure temperament. Because motor disabilities are one of the main characteristics of these children, assessment instrument must be accommodated to minimize impairment bias, without altering what the test measures. Therefore, a pilot-study with 12 children with PIMD (age between 1.8 and 4.9 years) was conducted to analyze the bias of motor disabilities on these instrument. Results showed that seven (19.4%) of the CBQ items and nine (24.3%) of the IBQ-R items contained motor behavior which biased the validity of the instrument. A proposal is made regarding the adaptation of the nine IBQ-R items.