Using an epidemiological approach to examine outcomes affecting young children with
            Down syndrome and their families

Hodapp, Robert M.; Urbano, Richard C.; So, Stephanie A.

doi:10.3104/perspectives.309

Cited by 9 publications

(3 citation statements)

References 41 publications

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“…This approach can offer several advantages in order to achieve effective research [27]. Firstly, epidemiological studies are population-based studies in contrast to clinical studies that usually examine small numbers of participants [28]. This population perspective allows the study findings can be interpreted in terms of group at risk (e.g., children) within particular socio-demographical context, thereby ensuring data can be extrapolated to a larger population with similar features.…”

Section: Discussionmentioning

confidence: 99%

The Infancia y Procesamiento Sensorial (InProS—Childhood and Sensory Processing) Project: Study Protocol for a Cross-Sectional Analysis of Parental and Children’s Sociodemographic and Lifestyle Features and Children’s Sensory Processing

Fernández-Pires

Valera-Gran

Sánchez-Pérez

et al. 2020

IJERPH

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Sensory processing difficulties may have potential detrimental consequences on the physical, social and intellectual development of children. It includes serious disturbances affecting emotional regulation, motor performance, social behavior and daily life functioning, among others factors. Since these symptoms are more frequent among children with disabilities, most research has been carried out in clinical populations. However, recent studies have suggested that sensory problems may be prevalent in around 20% of children without clinical conditions. To date, epidemiological research on sensory dysfunctions in normally developing children is lacking; therefore, it is unknown whether or not sensory processing difficulties are significant factors that affect child’s development. Hence, this study has a double general purpose: (1) to determine the sensory profile of school-aged children; (2) to examine the associations between atypical sensory processing patterns and socio-demographic, health and lifestyle features of these children and their parents. The Infancia y Procesamiento Sensorial (InProS, Childhood and Sensory Processing in English) project is a population-based cross-sectional study of Spanish children aged 3–7 years. Data were gathered from different ad hoc questionnaires and several standardized tests. We propose an objective and reliable methodology using statistical and research procedures to describe and determine associations with sensory processing outcomes. We believe that this project will contribute to filling the gap in epidemiological research on sensory issues by providing more convincing evidence. Nevertheless, the potential results should be corroborated in other larger samples.

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Section: Discussionmentioning

confidence: 99%

The Infancia y Procesamiento Sensorial (InProS—Childhood and Sensory Processing) Project: Study Protocol for a Cross-Sectional Analysis of Parental and Children’s Sociodemographic and Lifestyle Features and Children’s Sensory Processing

Fernández-Pires

Valera-Gran

Sánchez-Pérez

et al. 2020

IJERPH

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“…Demography examines the family structures, educational attainments, and economic status of families in different areas and of individuals of differing ages, genders, ethnicities, or religions. Given Down syndrome's relatively high prevalence and identification at or near birth, these individuals and their families seem well-suited to epidemiological and demographic analyses [Hodapp et al, 2006]. Down syndrome family research will increasingly feature studies that examine such real-world outcomes.…”

Section: Studies Focused On Families Of Persons With Down Syndromementioning

confidence: 99%

Families of persons with Down syndrome: New perspectives, findings, and research and service needs

Hodapp

2007

Ment. Retard. Dev. Disabil. Res. Rev.

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To understand the families of offspring with Down syndrome, this article begins by describing the change in orientation--from "negative" to "stress-and-coping" perspectives--in studies of families of offspring with disabilities. In reviewing the existing studies, mothers, fathers, and siblings cope slightly better than family members of persons with other disabilities, a phenomenon called the "Down syndrome advantage." Beyond this more general finding, however, much remains unknown. Most studies examine only parental or sibling levels of stress or coping, leaving unknown the marital, occupational, health, educational, and other "real-world" outcomes for these family members. Increased research attention is needed to understand the life-span needs of families of persons with Down syndrome and the impact of cultural and sociocultural diversity on family outcomes. It will also be important to relate family outcomes to differences in the offspring's behaviors, development, relationships, medical conditions, psychopathology, and the presence (and effectiveness) of needed support services. Although these families have received some research attention over the past several decades, we now need to make family research in Down syndrome more concrete, more life-span, and more tied to characteristics of the individual with the syndrome and the family's surrounding support system.

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“…For genetic syndromes such as DS, a large variability in adaptive behaviour exists [ 9 ], indicating that development is not only determined by genetics, but also by other factors (e.g., early, tailored rehabilitative programs, schooling, and occupational programmes [ 10 ]). Adaptive behaviour in individuals with Down syndrome (DS) typically shows a specific phenotypic profile with points of strength in self-care, daily living skills, and socialisation, and a point of weakness in reception [ 11 ]: adaptive skills are generally higher than cognitive and language abilities, and they continued to improve with age [ 12 , 13 ], even past the time when cognitive abilities have usually reached a plateau [ 14 ].…”

Section: Introductionmentioning

confidence: 99%

The Surplus Effect in Adaptive Behaviour in Down Syndrome: What Can Promote It?

et al. 2021

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Background: In Down syndrome (DS), adaptive behaviour often shows a “surplus effect” (i.e., higher adaptive abilities than expected from cognitive skills). As inclusive schooling has become mandatory in Italy, we studied the impact of school inclusion on the surplus effect of adaptive behaviour in adult DS, considering potential confounding factors such as parental education. Methods: All consecutive DS individuals from three different sites were queried prospectively regarding type of schooling (inclusive and non-inclusive). Demographic data were documented; cognitive abilities and adaptive behaviour were assessed (Coloured Progressive Matrices and Vineland Adaptive Behaviour Scales). The aim was to establish the presence of a surplus effect in adaptive behaviour, primarily in the overall level and secondarily in the main domains and subdomains. A multivariable-adjusted logistic regression model was used for the association of schooling, and parental education. Results: The majority (65%) showed a surplus effect in adaptive behaviour and had attended inclusive schools (85%). Higher adaptive skills as well as early and longer functional treatment programmes were more readily available for younger individuals. In the group of inclusive schooling, the surplus effect on overall adaptive behaviour was present in 70% as opposed to 38% in the group without inclusive schooling, significant when adjusted for gender and maternal education. This was also observed in socialisation, written, and community, and after adjustment in playing and leisure time. Conclusions: Adaptive behaviour showed a surplus effect in the majority of DS adults, even more so after inclusive schooling. Younger adults showed higher adaptive skills. Moreover, female gender and higher maternal educational level significantly enhanced this surplus effect.

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Using an epidemiological approach to examine outcomes affecting young children with Down syndrome and their families

Cited by 9 publications

References 41 publications

The Infancia y Procesamiento Sensorial (InProS—Childhood and Sensory Processing) Project: Study Protocol for a Cross-Sectional Analysis of Parental and Children’s Sociodemographic and Lifestyle Features and Children’s Sensory Processing

The Infancia y Procesamiento Sensorial (InProS—Childhood and Sensory Processing) Project: Study Protocol for a Cross-Sectional Analysis of Parental and Children’s Sociodemographic and Lifestyle Features and Children’s Sensory Processing

Families of persons with Down syndrome: New perspectives, findings, and research and service needs

The Surplus Effect in Adaptive Behaviour in Down Syndrome: What Can Promote It?

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