Undernutrition in children with profound intellectual and multiple disabilities (<scp>PIMD</scp>): its prevalence and influence on quality of life

Holenweg-Gross, Cécile; Newman, Christopher J.; Faouzi, M.; Poirot-Hodgkinson, I.; Bérard, C.; Roulet-Perez, E.

doi:10.1111/cch.12085

Cited by 15 publications

(9 citation statements)

References 28 publications

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“…and that parents are more satisfied with the medical care for their child if their knowledge is valued as such by medical and other professionals (Stringer et al., 2018; de Geeter et al., 2002). At the same time, medical and other professionals have valuable expertise when it comes to assessing the situation of a person with PIMD (Daelman, 2003; Holenweg‐Gross et al., 2014; Takahashi & Tanaka, 2018). This being said, we should add that the knowledge of professionals is not objective knowledge either, especially in relation to this group.…”

Section: Discussionmentioning

confidence: 99%

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

Kruithof

Willems

Etten-Jamaludin

et al. 2020

Research Intellect Disabil

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Persons with profound intellectual and multiple disabilities (PIMD) have an estimated IQ below 20. They have profound neuromotor dysfunctions, often accompanied by sensory impairments and medical problems, such as seizures, respiratory and feeding problems (Nakken & Vlaskamp, 2007). Persons with PIMD have little or no understanding of verbal language and no apparent symbolic interaction with objects and are therefore always dependent on others (Nakken & Vlaskamp, 2007). This dependency means that parents of persons with PIMD play a large, often lifelong (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001), role in the lives of their child. Although most people with PIMD live in professional care settings, some of them, in all age groups, live at home. Rough estimations in the Netherlands suggest percentages of between 2.4% and 13% of people with PIMD being cared for in their family home (Schuurman, 2010; Vlaskamp, 2002; Vugteveen, Putten, & Vlaskamp, 2014). However, the ambiguous description of the group in literature and surveys makes that especially the numbers of people with PIMD living at home may be underestimated (Vugteveen et al., 2014). The literature suggests that parents have unique and crucial knowledge of their child with PIMD, which helps them, for example, to improve the support and care of the child, regardless of whether the child is living at home or not (Gauthier-Boudreault, Gallagher, & Couture, 2017; Jokinen & Brown, 2005). For example, if persons with PIMD live at a residential care facility or go to a day activity centre, parents are often involved in personalizing the care for their child, monitoring this care and making decisions on

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Section: Discussionmentioning

confidence: 99%

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

Kruithof

Willems

Etten-Jamaludin

et al. 2020

Research Intellect Disabil

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“…People with profound developmental disabilities have some of the most severe impairments seen in society, involving cognitive (IQ less than 20), communicative (nonverbal), and motoric function (impaired activities of daily living), with onset before the age of 18 years. Although they constitute a very small proportion of society, they are at increased risk for multiple medical problems, 2 including paralysis, epilepsy, 3 fracture, 4 inability to communicate, and malnutrition, 5,6 with significantly increased costs as a consequence. 7 Accelerated mortality 8 demonstrates that they face enormous medical challenges but are often excluded from scientific study.…”

Section: Contextmentioning

confidence: 99%

Potential Benefits of Ameliorating Metabolic and Nutritional Abnormalities in People With Profound Developmental Disabilities

Glick

Fischer

2017

Nutr Metab Insights

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BACkgRouND: People with profound developmental disabilities have some of the most severe neurological impairments seen in society, have accelerated mortality due to huge medical challenges, and yet are often excluded from scientific studies. They actually have at least 2 layers of conditions: (1) the original disability and (2) multiple under-recognized and underexplored metabolic and nutritional imbalances involving minerals (calcium, zinc, and selenium), amino acids (taurine, tryptophan), fatty acids (linoleic acid, docosahexaenoic acid, arachidonic acid, adrenic acid, Mead acid, plasmalogens), carnitine, hormones (insulinlike growth factor 1), measures of oxidative stress, and likely other substances and systems. SuMMARy: This review provides the first list of metabolic and nutritional abnormalities commonly found in people with profound developmental disabilities and, based on the quality of life effects of similar abnormalities in neurotypical people, indicates the potential effects of these abnormalities in this population which often cannot communicate symptoms. key MeSSAgeS: We propose that improved understanding and management of these disturbed mechanisms would enhance the quality of life of people with profound developmental disabilities. Such insights may also apply to people with other conditions associated with disability, including some diseases requiring stem cell implantation and living in microgravity.

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“…Often they have associated sensory impairments, behavioural issues and present complex healthcare needs due to medical comorbidities (pain, sleep disorders, musculoskeletal complications, digestive and respiratory issues) [ 6 ]. PIMD is estimated to be prevalent in between 0.4 and 1.3‰ of children [ 7 , 8 ] and its aetiology is variable, resulting from severe acquired or congenital neurological disorders, which namely include diagnoses such as cerebral palsy, genetic or metabolic encephalopathies and certain genetic syndromes [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

Parents’ Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities

Neyroud

Newman

2021

Children

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Children with profound intellectual and multiple disabilities (PIMD) need adaptations to participate in sports and it is more difficult for them to access these activities. We investigated the effects of adaptive sports in children with PIMD as perceived by their parents. The parents answered a postal questionnaire exploring the effects of adaptive sports during the 3 days following an activity. The questionnaire explored twelve domains of children’s daily lives, such as sleep and appetite. We calculated a composite score, including all of these domains, to assess whether the children globally benefited from adaptive sports. Of the families, 27/63 responded (participation 42.9%). Four domains improved after the sports activity in an important proportion of children (improvement in 64.0% of children for wellbeing, 57.6% for mood, 56.0% for comfort and 48.1% for sleep). Among the majority of children, the other eight domains remained mostly stable. Three quarters of parents reported a globally positive effect of adapted physical activities on their child. These findings support the further development and provision of adaptive sports for children with severe neurological impairments.

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Undernutrition in children with profound intellectual and multiple disabilities (PIMD): its prevalence and influence on quality of life

Abstract: Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary.

Cited by 15 publications

References 28 publications

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

Potential Benefits of Ameliorating Metabolic and Nutritional Abnormalities in People With Profound Developmental Disabilities

Parents’ Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities

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