Children with severe multiple disabilities face numerous possibilities for enjoying music and participating in performance activities; however, the research practice for realizing these possibilities ...involves various difficulties. To understand the disabilities of children and their engagement with music, awareness of one’s perception of disability is necessary for each practitioner–researcher. The researchers of the current study reflected on their personal views about disability and life histories and described and analyzed them through collaborative autoethnography (CAE). The study was conducted through the practice of combining electronic music equipment and traditional instruments as a music education project for children with severe multiple disabilities. The results demonstrated that the perceptions of the researchers about disability and their life histories interacted with and transformed their research practice. Additionally, the study highlighted how endeavors in CAE encouraged dialogue among researchers and deepened mutual understanding. The suggestions for researchers of music education practice with children with disabilities include analysis of disability from the first-person perspective and sharing of views among co-researchers.
Background
This study aimed to determine the relationship between motor abilities and quality of life in children with severe multiple disabilities.
Methods
In this cross‐sectional study, motor ...abilities of 29 children (mean age 9.8 years; 45% girls) with severe multiple disabilities IQ < 25; Gross Motor Function Motor Classification System level V were measured with the MOtor eVAluation in Kids with Intellectual and Complex disabilities (Movakic) questionnaire (completed by the child's physical therapist). Quality of life was measured with the Quality of Life‐Profound Multiple Disabilities (QoL‐PMD) questionnaire (completed by the child's parents).
Results
A significantly moderate to high correlation was found between the total scores on the Movakic and the QoL‐PMD (r = 0.40, P = 0.03), indicating that higher scores in motor abilities are associated with a higher level of quality of life. Furthermore, significantly moderate to high correlations were found between the total score on the Movakic and the dimension Physical Well‐Being, Development and Activities of the Qol‐PMD. In multiple linear regression models, all significant bivariate relationships between the Movakic total scores and QoL‐PMD dimensions remained significant after controlling for the Gross Motor Function Motor Classification System level.
Conclusions
In these children with severe multiple disabilities, motor abilities (as measured by Movakic) are moderately related to quality of life (as measured by the QoL‐PMD).
•Movakic is a valid instrument for measuring motor abilities in children with SMD.•Responsiveness seems significant to change in motor abilities after events that likely affect motor ...abilities.•Physiotherapists are able to use Movakic in clinical practice for the Dutch population.•The English version of Movakic is in progress.
Movakic is a newly developed instrument for measurement of motor abilities in children with severe multiple disabilities, with a satisfactory feasibility and content validity and good inter-observer and test-retest reliability.
The objective of this study was to investigate its construct validity and responsiveness to change.
Sixty children with severe multiple disabilities (mean age 7.7 years, range 2–16) were measured using Movakic six times during 18 months. Construct validity was assessed by correlating Movakic scores with expert judgment. In order to assess responsiveness, scores during 3-months intervals were compared (mean score-changes and intraclass correlations) during which some children experienced meaningful events influencing motor abilities and during which others experienced no such event.
Forty-five percent of children had a lower cognitive development level than 6-month, 52% had Gross Motor Function Classification System level V and 37% had level IV. For 27 children all measurements were completed, six children dropped out. Construct validity was good (r=0.50–0.71). Responsiveness was demonstrated by significantly larger score changes after events than when such events did not occur.
Movakic is a valid instrument for measuring motor abilities in children with severe multiple disabilities. Results suggest responsiveness to change in motor abilities after meaningful events.
•We found eight instruments evaluating motor abilities in children with disabilities.•Psychometric properties were insufficient for all instruments.•A few instruments may be candidate for children ...with severe multiple disabilities.•Clinical criteria will be developed to apply to these candidate instruments.
Based on a systematic review, psychometric characteristics of currently available instruments on motor abilities of children with disabilities were evaluated, with the aim to identify candidates for use in children with severe multiple (intellectual and motor) disabilities. In addition, motor abilities are essential for independent functioning, but are severely compromised in these children.
The methodological quality of all studies was evaluated with the Consensus Based Standards for the Selection of Health Status Measurement Instruments (COSMIN) Checklist; overall levels of evidence per instrument were based on the Cochrane Back Review Group strategy.
As a result, 18 studies with a total of eight instruments, developed for children with cerebral palsy (CLA, GMFM-88 and LE85), spinal muscular atrophy (MHFMS), neuromuscular diseases (MFM), disabilities 0–6 years (VAB, WeeFIM), and one developed specifically for children with severe multiple disabilities (TDMMT) were found.
Strong levels of evidence were found for construct validity of LE85 and MFM and for responsiveness of WeeFIM, but reliability studies of these instruments had a limited methodological quality. Up to now studies of the TDMMT resulted in limited and unknown evidence for structural validity due to the poor methodological quality of reliability studies.
In a next step, the clinical suitability of the instruments for children with severe multiple disabilities will be evaluate.
The purpose of this study was to replicate Fleming et al. (2010) by examining the use of eye gaze in identifying reinforcers for 3 individuals with severe multiple disabilities. Preference was ...measured in a paired‐choice stimulus preference assessment using duration of eye gaze to determine stimulus selection. A subsequent reinforcer assessment used a reversal design to test the reinforcing effects of the high‐ and low‐preference stimuli. The results replicated Fleming et al., indicating that using eye gaze as a selection method successfully identified reinforcing stimuli.
Background The purpose of this study is to describe feasibility and test–retest reliability of the six‐minute walking distance test (6MWD) and an adapted shuttle run test (aSRT) in persons with ...severe intellectual and sensory (multiple) disabilities.
Materials and Methods Forty‐seven persons with severe multiple disabilities, with Gross Motor Function Classification System (GMFCS) grade I and II and wearing a heart rate monitor, performed the 6MWD and the aSRT twice.
Results Ninety‐six per cent of the participants completed both tests successfully. Wilcoxon signed‐rank test revealed no significant differences between test and retest (P < 0.05). Intraclass correlation coefficients for all variables were ≥0.90. Limits of agreement for aSRT in GMFCS II subjects were insufficient.
Conclusion Six‐minute walking distance test is feasible and reliable for measuring functional exercise capacity in GMFCS I and II participants with severe multiple disabilities. aSRT is feasible and reliable for measuring aerobic capacity in GMFCS I participants. Compared with others, participants with severe multiple disabilities achieved poor results in 6MWD.
Some researchers have reported difficulties in identifying preferred items for individuals with severe intellectual and physical disabilities (SIPD), in part because these individuals often do not ...possess the motor skills needed to select and manipulate the items included within the assessments. The purpose of the current study was to address three research questions: a). Would differences in preference patterns occur between assessments that required an individual with SIPD to perform a motor response that was difficult for them to emit versus assessments that used an augmentative device (i.e., press a large microswitch) to activate the toy? b). Would teaching the specific skills needed to activate a toy result in an increase in toy engagement during preference assessment probes? and c) Would teaching the participant a motor response to directly activate the toy result in a shift in preference? Data were collected within a multielement (across conditions) design. The results of this study showed that (a) differences in preference patterns were observed when different motor responses were required to show preference between items, (b) acquisition of specific motor skills to activate a toy resulted in an increase in toy engagement during preference assessment probes that required direct toy manipulation, and (c) acquisition of motor skills also resulted in a shift in preference towards directly manipulating items versus activating items via microswitches.
This article describes a framework for assessing young children with severe multiple disabilities that was developed by Dr. Jan van Dijk and colleagues in the Netherlands. The assessment is guided by ...the lead of the child as it looks at the underlying processes of learning including biobehavioral state, orienting response, learning channels, approach–withdrawal, memory, interactions, communication, and problem solving. Through the use of two case studies, each of the learning processes is described along with suggestions for assessment and intervention. A sample protocol with observations, child strengths and needs, and suggestions for intervention is included.
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