An Exploration of the Cognitive, Physical and Psychosocial Development of Children with Apert Syndrome

Hilton, Caroline

doi:10.1080/1034912x.2016.1194379

Cited by 12 publications

(14 citation statements)

References 40 publications

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“…This is partly because children with disabilities are mostly marginalized, highly discriminated, socially excluded and more likely to be exposed to serious illnesses ( Kuper et al, 2014 ). Even worse, functional impairment of a child has long-term implications for their growth, capable of stunting their cognitive, emotional, social, and educational development ( Dillmann et al, 2019 ; Hilton, 2017 ). In most cases though, children's disability has an impact on the well-being and quality of life of caregivers and parents, which in turn impacts the child ( Firth and Dryer, 2013 ; Tseng et al, 2016 ).…”

Section: Introductionmentioning

confidence: 99%

Correlates of child functional difficulties status in Ghana: A further analysis of the 2017/18 multiple indicator cluster survey

Dey

Dziwornu

Frimpong‐Manso

et al. 2020

Heliyon

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Background Functional difficulties have long-term implications for children's physical, cognitive, emotional, social, and academic growth and development. Although the subject of functional difficulties has received enough scholarly attention in the developed world, few studies have addressed the issue in Ghana. Therefore, the study aimed to regress child, maternal and household and geographical level factors associated with the functional difficulty of children in Ghana. Method We analysed the 2017/18 multiple indicator cluster survey dataset. The study sample consists of weighted cases of 21,871 children within the ages of 5–17 years. Summary statistics were produced for the study variables. Bivariate analyses were performed to select significant correlates for the multivariate analysis. We accounted for sample design and weight before using Poisson regression techniques to do the bivariate and multivariate analysis. Results These factors were significantly associated with functional difficulties among 5–17 years old children in Ghana: not covered with health insurance, mothers who have a functional difficulty and those without information on their functional difficulty status, and children who dwelt in richer households compared to the richest households. Compared to the northern region, children from the remaining nine regions in Ghana were more likely to have had a child functional difficulty. Conclusion Given the results, the government of Ghana and other development partners should promote policies and programs to reduce the consequences of disability or functional difficulties in children by taking into consideration factors like mothers' functional difficulty, access to health insurance, and regional and economic disparities in Ghana.

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Section: Introductionmentioning

confidence: 99%

Correlates of child functional difficulties status in Ghana: A further analysis of the 2017/18 multiple indicator cluster survey

Dey

Dziwornu

Frimpong‐Manso

et al. 2020

Heliyon

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“…Children with Apert syndrome have a complex profile, due to the range of difficulties such as visible difference (or disfigurement), limited finger mobility, hearing impairment, and visual impairment (Hilton, 2017). Most of the literature on Apert syndrome focuses on surgical management and what literature there is on cognitive development tends to be drawn from quantitative data, based on standardized assessments.…”

Section: The Development Of Arithmetic Skills In Children With Apert mentioning

confidence: 99%

“…In general, the literature to date has tended to focus on the management of the syndrome from a clinical perspective; much less is known about the cognitive and social development of children with Apert syndrome (Hilton, 2017).…”

Section: Introductionmentioning

confidence: 99%

Fingers Matter: The Development of Strategies for Solving Arithmetic Problems in Children With Apert Syndrome

Hilton

2019

Front. Educ.

Self Cite

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There is very little research on cognitive outcomes and challenges for children with Apert syndrome. This paper describes the findings of a 2½-year longitudinal exploration of the development of arithmetic skills in 10 children with Apert syndrome, who were aged between 4 and 9 years at the beginning of the study. There is evidence to suggest that children with Apert syndrome underachieve in mathematics, especially in areas requiring competence and confidence arithmetic. This study explored the changing strategies the children used as they developed their arithmetic problem solving skills. Of particular interest were the roles of finger gnosis and finger mobility in supporting the development of these skills. A case study approach was adopted in order to explore the children's problem solving strategies in depth. Children with Apert syndrome are born with their fingers fused and undergo several operations with the aim of ensuring that they have as many functioning fingers as possible. Finger gnosis and finger mobility were both seen to support arithmetic problem solving strategies and skills and reduce the reliance on mental strategies alone. This study found that children with Apert syndrome are disadvantaged if they are not supported to develop their finger gnosis and finger mobility skills. The findings have implications for children with Apert syndrome, but also add to the literature on the role of finger gnosis and finger mobility in the development of skills in early number and arithmetic.

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“…Children born with Apert syndrome experience many stressors due to on-going surgeries beginning in the first months of life and are at risk of appearance differences, eye and visual problems, speech and language development difficulties, hearing loss, risks of intellectual disability, and developmental delays, including poor fine motor skills (Hilton, 2017). Further, individuals with Apert syndrome are likely to experience social difficulties, including teasing and social withdrawal, difficulties separating from caregivers, and preferences for playing with younger peers (Sarimski, 2008; Maliepaard et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

“…In some instances, affected individuals may also have cleft palate and an underdeveloped jaw. Apert syndrome has been reported to occur 1 in 65 000 births in North America and Europe (Hilton, 2017). The diagnosis of Apert syndrome can be made at the 16th week of pregnancy by 3D ultrasound (Sarimski, 2008).…”

Section: Introductionmentioning

confidence: 99%

Social Experiences of Turkish Parents Raising a Child With Apert Syndrome: A Qualitative Study

Saydam

Çüçülayef²,

Doğan³

et al. 2020

The Cleft Palate Craniofacial Journal

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Objective: Apert syndrome is a rare and understudied craniofacial condition with regard to its psychosocial impact on children and their parents. Due to the lack of studies focusing solely on the social experiences of children and families with Apert syndrome, it is difficult to develop interventions and strategies to support well-being and positive adjustment for this particular population. This study addressed this gap by assessing the unique social experiences of parents who are raising their children with Apert syndrome including difficulties they face and strategies they use to cope with challenges. Design: Descriptive qualitative study using thematic analysis. Participants: Participants included 21 parents of 12 children (aged 1-12 years) with Apert syndrome (9 couples, 2 fathers, and 1 mother) who were recruited from a pediatric neurosurgery unit in Turkey. Results: The qualitative analysis yielded four main themes describing the experiences of parents including (1) social challenges; (2) coping with negative reactions; (3) promoting socialization and independence; and (4) sources of strength. Conclusions: Parents reported several challenges, including social stigmatization, and utilized a range of strategies to support both their own and their child’s positive adaptation and resiliency, including the use of religion and reliance on their spouses for support. Results offer clinically relevant insights about the strengths and challenges of families coping with Apert syndrome.

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An Exploration of the Cognitive, Physical and Psychosocial Development of Children with Apert Syndrome

Cited by 12 publications

References 40 publications

Correlates of child functional difficulties status in Ghana: A further analysis of the 2017/18 multiple indicator cluster survey

Correlates of child functional difficulties status in Ghana: A further analysis of the 2017/18 multiple indicator cluster survey

Fingers Matter: The Development of Strategies for Solving Arithmetic Problems in Children With Apert Syndrome

Social Experiences of Turkish Parents Raising a Child With Apert Syndrome: A Qualitative Study

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