Annette van der Putten

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.

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.

Heart rate and physical activity patterns in persons with profound intellectual and multiple disabilities

Abstract Waninge, A, van der Putten, AAJ, Stewart, RE, Steenbergen, B, Van Wijck, R, and van der Schans, CP. Heart rate and physical activity patterns in persons with profound intellectual and multiple disabilities. J Strength Cond Res 27(11): 3150–3158, 2013—Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity levels of persons with PIMD and to analyze these heart rate patterns according to participant characteristics, observed level of activity, days, and time of day. The heart rate patterns of 24 participants with PIMD were measured continuously using a heart rate monitor for 8 h·d−1 for a period of 6 days. Physical activity levels were measured with questionnaires. Data were analyzed using multilevel analysis. The results indicate that the participants use only 32% of their heart rate reserve over 6 days. The intensity of heart rate reserve ranged from 1 to 62%. On a given day, wide ranges in heart rates between participants and within persons were observed. Between days, only small ranges in the heart rate were found. The participants could be grouped into 4 classes according to their heart rate. In addition, factors such as time of day, physical activity, and age are significantly related to heart rate patterns. In conclusion, this study is an important first step in exploring activity patterns based on heart rate patterns in persons with PIMD. The participants used relatively small fractions of their heart rate reserves. Time of day and age appear to have a considerable influence on heart rate patterns. The observed classes in heart rate patterns suggest that other probably more personal and psychosocial factors have significant influences on heart rate patterns, as well.

The interrelationships between motor, cognitive, and language development in children with and without intellectual and developmental disabilities

It is generally agreed that cognitive and language development are dependent on the emergence of motor skills. As the literature on this issue concerning children with developmental disabilities is scarce, we examined the interrelationships between motor, cognitive, and language development in children with intellectual and developmental disabilities (IDD) and compared them to those in children without IDD. In addition, we investigated whether these relationships differ between children with different levels of cognitive delay. Seventy-seven children with IDD (calendar age between 1;0 and 9;10 years; mean developmental age: 1;8 years) and 130 typically developing children (calendar age between 0;3 and 3;6 years; mean developmental age: 1;10 years) were tested with the Dutch Bayley Scales of Infant and Toddler Development, Third Edition, which assesses development across three domains using five subscales: fine motor development, gross motor development (motor), cognition (cognitive), receptive communication, and expressive communication (language). Results showed that correlations between the motor, cognitive, and language domains were strong, namely .61 to .94 in children with IDD and weak to strong, namely .24 to .56 in children without IDD. Furthermore, the correlations showed a tendency to increase with the severity of IDD. It can be concluded that both fine and gross motor development are more strongly associated with cognition, and consequently language, in children with IDD than in children without IDD. The findings of this study emphasize the importance of early interventions that boost both motor and cognitive development, and suggest that such interventions will also enhance language development.

Validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) in a sample of Dutch non-ambulatory children with cerebral palsy

Abstract Purpose: To assess the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)-Dutch Version, a proxy measure of health status and well-being of non-ambulatory children with cerebral palsy (CP). Methods: Parents (n = 66) of 47 boys/19 girls between 5 and 18 years with CP (GMFCS IV–V) participated. To assess the reliability each domain and the total measure was tested for internal consistency, test–retest and inter-rater reliability. Known-groups validity of the CPCHILD-DV was assessed by comparing mean scores of clinically distinct subgroups and convergent validity by correlating the CPCHILD-DV with the TNO-AZL Preschool Children Quality of Life (TAPQOL). Results: The mean CPCHILD-DV total score was 52.0 (SD11.5). Test–retest reliability of the total score as assessed by intraclass correlations (ICC) was 0.73 (domains: 0.55–0.80). For the inter-rater reliability the ICC was 0.64 (domains: 0.58–0.90); the Cronbach’s alpha’s ranged from 0.60 to 0.95. The CPCHILD score could differentiate between GMFCS levels and between subgroups of cognitive level in the domain “communication and social interaction”. There were moderate significant correlations (range rs: 0.31–0.50) between sections of CPCHILD-DV and TAPQOL. Conclusions: The CPCHILD-DV has sufficient reliability and validity as a proxy measure of health status and well-being of non-ambulatory children with CP. Implications for Rehabilitation The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) can be used to estimate health related quality of life of non-ambulatory children with cerebral palsy. The Dutch version of the CPCHILD has sufficient reliability and validity to be used as a proxy measure in research and clinical practice.

Motor activation in people with profound intellectual and multiple disabilities in daily practice

ABSTRACT Background People with profound intellectual and multiple disabilities (PIMD) are at risk of being motorically inactive. This study investigated the degree and type of motor activation in daily practice and its relationship to personal and contextual factors. Method A total of 58 participants with PIMD participated in the study. Data concerning the motor activation were collected by means of a diary over a period of 14 days. Relationships to personal and contextual factors were analysed using multilevel analyses. Results The mean number of transfers was 3.1 times per day (range: 0–9, SD = 1.4), the mean number of relocations was 7.7 times per day (range: 2–13, SD = 2.5), and the mean number of motor activities offered was 1.5 per day (range: 0–10, SD = 1.9). Relationships to age, gender, location, and day of week were found. Conclusion Motor activation seems to be a minor part of the support provided to people with PIMD.

Learn and apply Using multi-sensory storytelling to gather knowledge about preferences and abilities of children with profound intellectual and multiple disabilities – three case studies

Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to changes in teachers’ knowledge about preferences and abilities and whether this knowledge was then applied in practice. Three dyads of children with PIMDs and their teachers read an MSST book 20 times during a 10-week period. A questionnaire designed to identify the teachers’ current knowledge was filled in before the 1st and again after the 10th and 20th reading sessions. Also, the teachers were asked for their opinion about their newly gathered knowledge. In all three cases, changes in the teachers’ knowledge were observed. However, teachers are insufficiently aware of their new knowledge and do not apply it in practice.

Understanding low levels of physical activity in people with intellectual disabilities: A systematic review to identify barriers and facilitators

BACKGROUND People with intellectual disabilities (ID) undertake extremely low levels of physical activity. AIMS To enhance understanding concerning low levels of physical activity in people with ID, this study has three aims: (1) to identify barriers to and facilitators of physical activity in people with ID; (2) to examine differences in barriers and facilitators between levels of ID (mild, moderate, severe, and profound); (3) to examine differences in barriers and facilitators between various stakeholder groups. METHODS AND PROCEDURES A systematic search was performed using the following databases from the year 1990: MEDLINE, ERIC, and PsycINFO. The studies included were peer reviewed, available as full text, and written in English, addressing barriers to and facilitators of physical activity in people with ID. The quality of the studies was assessed using existing critical review forms. All studies were subjected to qualitative synthesis to identify and compare barriers and facilitators. OUTCOMES AND RESULTS In all, 24 studies were retrieved, describing 14 personal and 23 environmental barriers and/or facilitators. The quality of the studies varied, particularly for qualitative studies. Only two studies included people with severe or profound ID. Stakeholder groups tend to identify barriers outside their own responsibility. CONCLUSIONS AND IMPLICATIONS Results reveal a broad range of barriers and facilitators, but not for people with more severe ID. Further research should also examine these factors among stakeholders responsible for providing support.

Participation of adults with visual and severe or profound intellectual disabilities: Definition and operationalization

BACKGROUND The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID. AIMS The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID. METHODS Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation. RESULTS A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters. CONCLUSIONS The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID.

Efforts to increase social contact in persons with profound intellectual and multiple disabilities: Analysing individual support plans in the Netherlands.

Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of people with PIMD. ISPs for 60 persons with PIMD in the Netherlands were inductively coded and illustrated with quotations. It turned out that every ISP contained information about social contacts. Of all the quotations extracted, 71.2% were about current conditions, 6.2% were about the future and less than 1% concerned actual goals. The social contacts of people with PIMD are mentioned in their ISPs, but this is rarely translated into goals. The results of the current study suggest that attention should be paid to ensuring that professionals understand the importance of social contacts and their application in practice.