Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders

Currie, Genevieve; Szabo, Joanna

doi:10.1080/17482631.2020.1725362

Cited by 65 publications

(80 citation statements)

References 39 publications

(44 reference statements)

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“…As a higher level of educational attainment is typically correlated with higher-paying careers and therefore more financial resources (Gregorio and Lee, 2002), it can be reasoned that objective burden faced by more educated caregivers is relatively lower. However, the social stigma associated with child disability (Currie and Szabo, 2020;Ellen Selman et al, 2018;Thrush and Hyder, 2014) and social withdrawal or isolation as a result of such stigma (Ngo et al, 2012) is a significant source of subjective burden. As caregivers who are more educated have more social capital and thus more to lose (Green et al, 2012), the burden of social stigma and withdrawal may be greater compared to uneducated caregivers.…”

Section: Analysis By Education Levelmentioning

confidence: 99%

Child disability and caregiving in low and middle income countries: Big data approach on open data

Bizzego

Lim

Schiavon

et al. 2020

Research in Developmental Disabilities

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Background: The presence of child disabilities might affect the amount of caregiving attention the child receives, with potential ramifications on the development of the child and increasing the likelihood of developing a more severe condition. Little is known about the association between child disabilities and caregiving practices in less developed countries, penalized by both lack of data and a research bias toward western societies. Method: In this study, we apply data mining methods on a large (N = 29,525) dataset from UNICEF to investigate the association between caregiving practices and developmental disabilities of the children, and highlight the differences between intellectual and other disabilities. Results: Our results highlight that, compared to other types of disabilities, intellectual disabilities increased the risk of being neglected by the caregiver in those activities oriented to the cognitive development. The education of the caregiver and the socioeconomical development of the country are actively involved in the moderation of the risk. Conclusion: We demonstrated that educational policies of parental training, such as psychoeducation regarding intellectual disabilities and destigmatization campaigns, are needed to benefit parental practices in low-and middle-income countries. developmental disabilities: parental involvement: low middle income countries; caregiving; child discipline; child education What this paper adds: The paper makes use of a data-driven approach to uncover patterns of caregiving practices in an often overlooked population of children with disabilities in low-and middleincome countries. Using current theories of caregiving, child care and child neglect, the paper integrates these findings with already established frameworks of parental caregiving.

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Section: Analysis By Education Levelmentioning

confidence: 99%

Child disability and caregiving in low and middle income countries: Big data approach on open data

Bizzego

Lim

Schiavon

et al. 2020

Research in Developmental Disabilities

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“…Unfortunately, despite the importance of social interactions and subsequent early learning and development, children with neurodevelopmental disabilities (NDD) are often excluded in our society because of their functional and behavioural limitations [14]. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM) 5, NDD "are characterized by developmental deficits that produce impairments of personal, social, academic, or occupational functioning" [15].…”

Section: Introductionmentioning

confidence: 99%

Effects of Social Isolation and Loneliness in Children with Neurodevelopmental Disabilities: A Scoping Review

2020

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Loneliness and social isolation have negative consequences on physical and mental health in both adult and pediatric populations. Children with neurodevelopmental disabilities (NDD) are often excluded and experience more loneliness than their typically developing peers. This scoping review aims to identify the type of studies conducted in children with NDD to determine the effects of loneliness and/or social isolation. Three electronic databases (Ovid MEDLINE, EMBASE, PsychINFO) were searched from inception until 5 February 2019. Two independent reviewers screened the citations for inclusion and extracted data from the included articles. Quantitative (i.e., frequency analysis) and qualitative analyses (i.e., content analysis) were completed. From our search, 5768 citations were screened, 29 were read in full, and 12 were included. Ten were case-control comparisons with cross-sectional assessment of various outcomes, which limited inference. Autism spectrum disorder, attention-deficit/hyperactivity disorder, and learning disorder were the most commonly studied NDD. This review showed that loneliness among children with NDD was associated with negative consequences on mental health, behaviour, and psychosocial/emotional development, with a likely long-term impact in adulthood. Lack of research in this area suggests that loneliness is not yet considered a problem in children with NDD. More studies are warranted using prospective designs and a larger sample size with a focus on the dynamic aspect of loneliness development.

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“… 13 Finally, the impact of the COVID-19 pandemic poses additional stressors to these caregivers of rare neurodevelopmental disorders who, even before the pandemic, reported experiencing social exclusion and isolation. 14 These additional stressors may include a loss of in-home support staff, concern about a perceived increased COVID-19 complication risk for their dependent, and economic stressors from financial instability and resource insecurity.…”

mentioning

confidence: 99%

Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic

et al. 2021

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Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers’ reported impact on their dependent’s services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported “feeling stressed but able to deal with problems as they arise,” and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.

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Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders

Cited by 65 publications

References 39 publications

Child disability and caregiving in low and middle income countries: Big data approach on open data

Child disability and caregiving in low and middle income countries: Big data approach on open data

Effects of Social Isolation and Loneliness in Children with Neurodevelopmental Disabilities: A Scoping Review

Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic

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