The relationship between motor abilities and quality of life in children with severe multiple disabilities

Mensch, Sonja; Echteld, Michael A.; Lemmens, Ryanne; Oppewal, Alyt; Evenhuis, Heleen M.; Rameckers, Eugène

doi:10.1111/jir.12546

Cited by 14 publications

(17 citation statements)

References 20 publications

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“…Individuals with SMID have motor abilities comparable to levels IV-V of the Gross Motor Function Motor Classification System (GMFCS) [2], and they only communicate nonverbally or using body language. The concept of SMID is very similar to that of severe multiple disabilities [3]. The main causes of SMID are hypoxic encephalopathy/postnatal distress (20.0% of cases); unknown prenatal causes (10.7%); external causes, including brain injury (8.3%); and meningitis/encephalitis (7.0%) [4].…”

Section: Introductionmentioning

confidence: 94%

Reliability and validity of the Japanese version of the Paediatric Pain Profile for children with severe motor and intellectual disabilities

et al. 2020

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Children with severe motor and intellectual disabilities experience chronic pain but cannot communicate verbally. However, no Japanese tool currently exists for assessing pain in this population. This study aimed to develop and evaluate the reliability and validity of a Japanese version of the Paediatric Pain Profile, which is a behavioral rating scale to assess pain in children with severe neurological disabilities. The sample comprised 30 children with severe motor and intellectual disabilities at three hospitals in Japan. Three specialist nurses rated low and high pain video scenes of the children (twice at 1-week intervals) using the Face, Legs, Activity, Cry, Consolability behavioral scale and a translated Japanese version of the Paediatric Pain Profile. On the basis of their ratings, we calculated the internal consistency, test–retest reliability, and intra- and inter-observer reliabilities of the Paediatric Pain Profile. Additionally, we assessed concurrent validity using the Face, Legs, Activity, Cry, Consolability behavioral scale and construct validity using low versus high pain scenes. Both internal consistency (low pain: alpha = 0.735; high pain: alpha = 0.928) and test–retest reliability (r = 0.846) of the Japanese version of the Paediatric Pain Profile were good. Intra-observer reliability was substantial (r = 0.748), whereas inter-observer reliability was only moderate (r = 0.529). However, the concurrent validity with Face, Legs, Activity, Cry, Consolability scores was good (r = 0.629) and construct validity was confirmed (p < 0.001). We confirmed the validity of the Japanese version of the Paediatric Pain Profile, but reliable pain assessment may require repeated ratings by the same person. To accurately assess pain in children with severe motor and intellectual disabilities, healthcare staff must be properly trained and become more skilled in using the Japanese version of the Paediatric Pain Profile.

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Section: Introductionmentioning

confidence: 94%

Reliability and validity of the Japanese version of the Paediatric Pain Profile for children with severe motor and intellectual disabilities

et al. 2020

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“…The knowledge about their needs is useful to inform work teams and provide support strategies that improve the quality of life of individuals with IDD (Schalock and Verdugo 2012;Mensch et al 2019;Schalock 2018). Further studies should evaluate the validity of sets of items for high support needs in different domains, especially those related to participation in home and community life.…”

Section: Implications For Practices and Future Researchmentioning

confidence: 99%

“…Further studies should evaluate the validity of sets of items for high support needs in different domains, especially those related to participation in home and community life. The knowledge about their needs is useful to inform work teams and provide support strategies that improve the quality of life of individuals with IDD (Schalock and Verdugo 2012;Mensch et al 2019;Schalock 2018). Likewise, we consider that efforts should be made to identify the support required for children with high needs to enhance their participation in the daily environments.…”

Section: Implications For Practices and Future Researchmentioning

confidence: 99%

Assessing support needs in children with intellectual disability and motor impairments: measurement invariance and group differences

Aguayo

Verdugo

Arias

et al. 2019

J intellect Disabil Res

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Background This study assessed the equivalence of the measurement of support needs between children with intellectual disability (ID) and children with intellectual and motor disabilities (IMD) and compared both groups in the different domains of support. Method The Supports Intensity Scale‐Children's Version was used to assess the support needs of 713 children with ID and 286 children with IMD, mainly associated with cerebral palsy. Results The results supported measurement invariance between the group of ID and IMD, which allowed to conduct comparison between them. Children with IMD scored higher on support needs than did children without IMD, suggesting that children with IMD needed more support than their peers without motor impairments. Furthermore, the ID levels interacted with motor impairments: at the highest levels of ID, groups tended to be similar in support needs, with high scores and low variability. The greatest differences were found in the domains of Home and Community activities. Conclusions This study points to the across‐condition of the construct of support needs in populations with intellectual and developmental disabilities. However, additional mobility impairments should be considered during the evaluation and planning of systems of support. In this regard, the Supports Intensity Scale‐Children's Version might have limitations when discriminating between samples with high support needs.

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“…Cerebral palsy football players must have reasonable motor skills in the game. Individuals or their activities are influenced by their motor skills [13]. Children with CP disorder will have balance and motor development problems [14], [15].…”

Section: Introductionmentioning

confidence: 99%

UMAC-CPF Coordination Test Model for Predicting the Eye, Hand, and Foot Coordination Ability of CP Football Players

Umar¹,

Ruslan²,

Misbah³

et al. 2022

saj

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The relationship between motor abilities and quality of life in children with severe multiple disabilities

Abstract: 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).

Cited by 14 publications

References 20 publications

Reliability and validity of the Japanese version of the Paediatric Pain Profile for children with severe motor and intellectual disabilities

Reliability and validity of the Japanese version of the Paediatric Pain Profile for children with severe motor and intellectual disabilities

Assessing support needs in children with intellectual disability and motor impairments: measurement invariance and group differences

UMAC-CPF Coordination Test Model for Predicting the Eye, Hand, and Foot Coordination Ability of CP Football Players

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