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.

Adults with mild intellectual disabilities: can their reading comprehension ability be improved?

BACKGROUND: Adults with a mild intellectual disability (ID) often show poor decoding and reading comprehension skills. The goal of this study was to investigate the effects of teaching text comprehension strategies to these adults. Specific research goals were to determine (1) the effects of two instruction conditions, i.e. strategy instruction to individuals and strategy instruction in small groups in a reciprocal teaching context; (2) intervention programme effects on specific strategy tests (so-called direct effects), and possible differences between strategies; (3) (long-term) transfer effects of the programme on general reading comprehension ability; and (4) the regression of general text comprehension by the variables of technical reading, IQ, reading comprehension of sentences (RCS), and pretest and posttest scores on the strategies taught. METHODS: In total, 38 adults (age range 20-72 years; mean age of 36 years) with ID participated in the study. IQs ranged from 45 to 69 with a mean IQ of 58. The intervention programme involved 15 weekly lessons of 1 h each, taught during 3 months. Blocks of lessons included each of Brown and Palincsar's strategies of summarizing, questioning, clarifying and predicting, as participants read and studied narrative and expository texts. RESULTS: Results indicated no significant difference between group and individual instruction conditions. Second, direct programme effects - as determined by posttest-pretest contrasts for strategy tests - were substantial, except for the questioning strategy. Third, even more substantial was the transfer effect to general text comprehension. Moreover, the results on this test were well maintained at a follow-up test. Finally, the variance of general reading comprehension ability was best explained by the test of RCS, and only moderately by the strategies trained. CONCLUSION: The presently used intervention programme provides a good starting point for adults with ID to become better readers.

Towards integrated paediatric services in the Netherlands: a survey of views and policies on collaboration in the care for children with cerebral palsy.

AIM: Worldwide, family-centred and co-ordinated care are seen as the two most desirable and effective methods of paediatric care delivery. This study outlines current views on how team collaboration comprising professionals in paediatric rehabilitation and special education and the parents of children with disabilities should be organized, and analyses the policies of five paediatric rehabilitation settings associated with the care of 44 children with cerebral palsy (CP) in the Netherlands. METHODS: For an overview of current ideas on collaboration, written statements of professional associations in Dutch paediatric rehabilitation were examined. The policy statements of the five participating settings were derived from their institutional files. Documents detailing the collaborative arrangements involving the various professionals and parents were evaluated at the institutional level and at the child level. Involvement of the stakeholders was analysed based on team conferences. RESULTS: Also in the Netherlands collaboration between rehabilitation and education professionals and parents is endorsed as the key principle in paediatric rehabilitation, with at its core the team conference in which the various priorities and goals are formulated and integrated into a personalized treatment plan. As to their collaborative approaches between rehabilitation centre and school, the five paediatric settings rarely differed, but at the child level approaches varied. Teams were large (averaging 10.5 members), and all three stakeholder groups were represented, but involvement differed per setting, as did the roles and contributions of the individual team members. CONCLUSION: Collaboration between rehabilitation and education professionals and parents is supported and encouraged nationwide. Views on collaboration have been formulated, and general guidelines on family-centred and co-ordinated care are available. Yet, collaborative practices in Dutch paediatric care are still developing. Protocols that carefully delineate the commitments to collaborate and that translate the policies into practical, detailed guidelines are needed, as they are a prerequisite for successful teamwork.

Family-centred care in family-specific teams.

OBJECTIVE: To evaluate the perceptions and views of parents and rehabilitation and special education professionals on the family-centredness of care delivered and received. DESIGN: Descriptive study with comparison of ratings in family-specific teams. SETTING: Five paediatric facilities in the Netherlands. SUBJECTS: Parents of children with cerebral palsy and professionals providing their children's rehabilitation and educational services. MAIN MEASURES: The Dutch Measure of Processes of Care for families (MPOC-NL) and the Measure of Processes of Care for service providers (MPOC-SP). Data were collected and analysed per family. RESULTS: In total 38 MPOC-NLs and 204 MPOC-SPs were returned. The family-specific team analysis of importance ratings yielded significant differences (P < 0.05) on all domains between parents, rehabilitation professionals and special education professionals. For Enabling and partnership (P < 0.01) and Specific information about the child (P < 0.01), parents considered the behaviours to be significantly more important than rehabilitation professionals. The problem-score analyses showed that in all domains a considerable number of parents (19-38%) did not receive the care they deemed important. CONCLUSION: Family-specific analyses of MPOC importance ratings revealed differences in attitudes towards importance of specific care behaviours of team members, which subsequently may have caused the relatively high incidence of parents not receiving the care they deemed important. This underscores the need to explore and attune opinions on what constitutes proper service delivery.

A review of salient elements defining team collaboration in paediatric rehabilitation.

OBJECTIVE: To explicate the complex process of team collaboration and identify salient elements of team collaboration in paediatric rehabilitation. DATA SOURCES: After an initial search to define key features of team collaboration a systematic search on team collaboration and the key features was executed to identify salient elements. The systematic search was carried out in Index Medicus (MEDLINE), Educational Resource Information Clearinghouse (ERIC) and American Psychological Association (Psyc INFO) covering the period from January 1993 to December 2004. REVIEW METHODS: Based on title and abstract relevant publications were identified and qualitatively assessed by two reviewers. To facilitate the interpretation of the salient elements, the articles were also classified according to the criteria 'participants and setting' and 'research method'. RESULTS: Of the total of 930 identified publications 28 studies proved eligible and were subsequently assessed. The evaluation yielded 29 salient elements defining five key features of team collaboration (i.e. communication, decision making, goal setting, organization and team process). Parent involvement proved to play a dominant role and was mentioned in relation to all five features. CONCLUSIONS: Based on the results, rather than an underlying element, it is proposed to consider parent involvement as the sixth feature of team collaboration. The 29 distinctive elements of teamwork could be useful as a guideline and checklist for empirical studies and may help enhance multidisciplinary collaboration in paediatric care. However, additional exploratory research focusing on the way these elements interact with each other and the key features and whether they facilitate or restrict team collaboration is warranted.

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.

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.

Specific language impairments and behavioural problems.

The behavioural functioning of 56 children with a specific language impairment (SLI), aged 8, 10, and 12 years, was examined by using the Child Behaviour Checklist. Parents as well as teachers filled in the questionnaire. The data shows that 48% of the children with SLI were considered to have behavioural problems either at home or in school. The problems differ significantly from the norm group on internalizing behaviour and total behaviour. The children do not demonstrate more externalizing behaviour than children in the norm group. It is hypothesized that the absence of aggressive behaviour might be a characteristic of children with SLI.

Early features of apoptosis detected by four different flow cytometry assays.

The objective of this study was to investigate the sensitivity, specificity and reproducibility of some frequently used apoptosis assays. The degree of apoptosis was tested in two T-lymphoblastoid cell lines, HSB and Jurkat, in which apoptosis was induced by ionizing radiation. HSB and Jurkat samples were taken before, and 0, 2, 4, 6, 8 and 24 h after irradiation with 6 and 10 Gray, or with 10 and 14 Gray, respectively. Four frequently used flow cytometric techniques were evaluated: (i) Annexin V/Propidium Iodide assay, detecting the translocation of phosphatidylserine to the outer leaflet of the plasma membrane, simultaneously with preservation of the membrane integrity; (ii) Terminal deoxynucleotidyl Transferase (TdT) Uridine triphosphate (UTP) nick end labelling (TUNEL), revealing the presence of DNA strand breaks; (iii) DNA-flow cytometry, measuring DNA-stainability (DNA-fragmentation assay) and (iv) Phycoerythrin-labelled (PE) Apo2.7-assay, a monoclonal antibody against 7A6 antigen, a protein, which becomes exposed upon the mitochondrial membrane during apoptosis. As a general standard for identifying that apoptosis had occurred, the cells were assessed for the presence of DNA-laddering on agar gel electrophoresis and by demonstration of characteristic cell morphology. Results were as follows: Fluorescein Isothiocyanate (FITC)-labelled Annexin V/Propidium iodide flow cytometry appeared to be the most sensitive, the most specific and the most user-friendly test for measurement of apoptosis of cells in culture conditions in suspension. The expression of 7A6 antigen on the mitochondrial membrane appeared to be not specific for apoptotic cell death.

Apolipoprotein E genotyping in patients with neurodegenerative diseases.

OBJECTIVES: There is a growing demand to perform apolipoprotein E (Apo-E) genotyping on neuropathologic archive material. Due to the extremely long fixation time, this material is unsuitable for routinely used Apo-E genotyping methods. We present an investigation into the applicability of a new method. DESIGN AND METHODS: An Apo-E genotyping method was tested for use on formalin-fixed paraffin-embedded brain tissue, using semi-nested PCR followed by hybridization with biotin-labeled allele-specific oligonucleotides, and chemiluminescent detection. The method was applied to 88 archive samples of different neurologic disorders. RESULTS: With this technique 76% (67/88) of the samples could be genotyped. The crucial step is the semi-nested PCR. All the samples from which a PCR product could be obtained, the Apo-E gene could be genotyped without interpretation problems. Seventy-six percent of the samples that could not be genotyped, were fixed in unbuffered formalin. CONCLUSIONS: This technique offers a good Apo-E genotyping method applicable on neuropathological archive material in order to support in retrospect clinical studies.

A novel assay for apoptosis. Flow cytometric detection of phosphatidylserine expression on early apoptotic cells using fluorescein labelled Annexin V.

In the early stages of apoptosis changes occur at the cell surface, which until now have remained difficult to recognize. One of these plasma membrane alterations is the translocation of phosphatidylserine (PS) from the inner side of the plasma membrane to the outer layer, by which PS becomes exposed at the external surface of the cell. Annexin V is a Ca2+ dependent phospholipid-binding protein with high affinity for PS. Hence this protein can be used as a sensitive probe for PS exposure upon the cell membrane. Translocation of PS to the external cell surface is not unique to apoptosis, but occurs also during cell necrosis. The difference between these two forms of cell death is that during the initial stages of apoptosis the cell membrane remains intact, while at the very moment that necrosis occurs the cell membrane looses its integrity and becomes leaky. Therefore the measurement of Annexin V binding to the cell surface as indicative for apoptosis has to be performed in conjunction with a dye exclusion test to establish integrity of the cell membrane. This paper describes the results of such an assay, as obtained in cultured HSB-2 cells, rendered apoptotic by irradiation and in human lymphocytes, following dexamethasone treatment. Untreated and treated cells were evaluated for apoptosis by light microscopy, by measuring the amount of hypo-diploid cells using of DNA flow cytometry (FCM) and by DNA electrophoresis to establish whether or not DNA fragmentation had occurred. Annexin V binding was assessed using bivariate FCM, and cell staining was evaluated with fluorescein isothiocyanate (FITC)-labelled Annexin V (green fluorescence), simultaneously with dye exclusion of propidium iodide (PI) (negative for red fluorescence). The test described, discriminates intact cells (FITC-/PI-), apoptotic cells (FITC+/PI-) and necrotic cells (FITC+/PI+). In comparison with existing traditional tests the Annexin V assay is sensitive and easy to perform. The Annexin V assay offers the possibility of detecting early phases of apoptosis before the loss of cell membrane integrity and permits measurements of the kinetics of apoptotic death in relation to the cell cycle. More extensive FCM will allow discrimination between different cell subpopulations, that may or may not be involved in the apoptotic process.

Validation of allele-specific polymerase chain reaction for DNA typing of HLA-B27.

To find a specific method for HLA-B27 typing for the diagnosis of rheumatic disorders, we extensively tested the single-step B27-specific polymerase chain reaction (PCR) described by Dominguez et al. (Immunogenetics 1992;36:277-82). This method, which relies on specific primer recognition of a sequence in the third exon (unique to the B27-allele), was used for screening of 270 characterized blood samples, 57 of which were B27-positive. The method proved to be both sensitive and specific: It unambiguously identified all B27-positive samples and produced no false-positive results. For approximately 1% of the samples, we had to repeat DNA isolation and PCR to obtain a clear control amplification signal. In contrast to the specificity of the PCR method, parallel-performed flow cytometry gave ambiguous results in 3% of the samples because of antibody cross-reactivity. Flow cytometry and the PCR method described were similar in labor and costs. Therefore, we conclude that the proposed single-step PCR is feasible in a routine laboratory and would improve the reliability of HLA-B27 typing.

Research on a psychomotor program for children with severe motor or multiple disabilities.

This report deals with help for brain-injured children with severe motor or multiple disabilities. It is argued that these children lack experiences due to their motor-disabilities. On the basis of an analysis of psychomotor programs the program by Le Gay Brereton was chosen for further research. This program was judged to be suitable because it is designed for teaching disabled children in the preschool age and because it emphasizes interaction between teacher and child. The authors, however, did not follow all her recommendations. Three experimental studies on the effects of this program are reported here. A special topic is the construction and use of the evaluation instruments. These instruments were designed for evaluating individual changes. One instrument serves to evaluate the training process. The other one tests for changes in specific cognitive skills. A statistically significant improvement was reported in all three experiments. Finally the authors present a plan for further research which concentrates on formulating individual goals for the children and on an instruction method for teachers.