Barriers to, and facilitators of, education for children with disabilities worldwide: a descriptive review.

Background: Inclusionary ideals regarding the education of children with disabilities (CWD) are articulated in various international human rights treaties and instruments such as the United Nations Convention on the Rights (2006), the Salamanca Statement (1994), and the 2030 agenda of the UN's Sustainable Development Goals (SDGs). In the latter, the fourth goal explicitly focuses on the removal of barriers to education and supporting access to quality, equity, and inclusion for people with disabilities. Although data regarding access to education among CWD remains scarce, it is well known that rates of their participation in education remain low, particularly among those in LMICs. The research question of this descriptive review is what are the barriers to and facilitators of education for children with disabilities worldwide aged between 6 and 18 years old? Methods: A descriptive review of literature published in English between 2013 and 2021 was conducted following the Joanna Briggs Institute (JBI) guidelines for a scoping review using the following databases: EBSCO, SocINDEX with full text (EBSCO), and ERIC (EBSCO). The search resulted in 7,072 titles and abstracts, which were narrowed down to 1,335 papers for full text review. After data extraction, 54 papers were included in the analysis, with 34 being qualitative, 10 quantitative, and 10 mixed-methods studies. The findings on the facilitators and barriers to education for children with disabilities were analyzed using the International Classification of Function, Disability and Health (ICF) and Urie Bronfenbrenner's Ecological Framework (1979). Results: Out of the eligible studies included in our research, 40 were conducted in developing countries, while 14 studies conducted on LMICs. Of the five environmental domains in the ICF, the most significant barriers were found to be that of attitudes and services, while technology and effective communication with school staff were found to play a crucial role in facilitating the education process. Applying Bronfenbrenner's framework, barriers occurred at the micro-system (school level), meso-system (parent and teacher communication), exo-system (services), and macro-system (education policy). Only 3 out of the 54 studies included the voices of CWD. Conclusion: Despite documented barriers, facilitators of education for CWD are underexplored, lacking research on their voices. Further investigation is needed.

Trajectories of poverty and economic hardship among American families supporting a child with a neurodisability.

BACKGROUND: Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well-being of family members, but evidence on the economic trajectories of families throughout the life course is missing. METHODS: Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and latent growth curve modelling to estimate trajectories of poverty and economic hardship over time. RESULTS: Families with a child with an ND had higher rates of poverty and economic hardship prior to childbirth and persistently over time. Analysis uncovered five latent trajectories for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child, raising a child with an ND was not associated with a unique trajectory of poverty. Families raising a child with an ND were however more likely to experience persistent economic hardship. CONCLUSIONS: The study establishes descriptive evidence for how having a child with an ND relates to changes in family economic conditions. The social and economic conditions that precede the child's birth seem to be driving the economic inequalities observed later throughout the life course.

Family impact of childhood neurodevelopmental disability: considering adaptive and maladaptive behaviour.

BACKGROUND: The aim of the current study was to identify functional predictors of perceived impact of childhood disability among families of children with neurodevelopmental disorders and disabilities. We first examined the relationship between sub-domains of adaptive and problematic behaviour and perceived family impact. Second, we examined whether the same sub-domains would emerge as significant after controlling for the impact of child diagnosis, including autism spectrum disorder, cerebral palsy and intellectual disability. METHOD: Caregivers of 216 children and adolescents (M = 8.17 years) with neurodevelopmental disorder and disability completed measures of children's practical, conceptual and social skills (i.e. adaptive behaviour), behaviour problems and positive and negative family impact. RESULTS: Indices of child adaptive and problematic behaviour were only significantly associated with perceived negative family impact. Children's practical and social skills, as well as emotional symptoms, emerged as significant predictors of perceived negative family impact, with emotional symptoms accounting for greatest variance. Including diagnosis in our statistical models did not explain additional variance above and beyond these particular sub-domains of child functioning. CONCLUSIONS: The study findings suggest that it is not children's most impaired domains of functioning that are perceived as significantly impactful by the family. The findings highlight the importance of devoting consideration to the ways in which the functional limitations experienced by children with chronic developmental health conditions similarly impact family life and well-being, regardless of disorder designation.

A model of well-being for children with neurodevelopmental disorders: Parental perceptions of functioning, services, and support.

BACKGROUND: Both child function and supports and services have been found to impact the well-being of parents of children with neurodevelopmental disorders (NDD). The relationship between function and services and the well-being of children with NDD is less well-understood and is important to clarify in order to effect program and service change. METHODS: The current project assessed whether child function as well as the adequacy of formal supports and services provided to children and their families were predictive of child well-being. Well-being was assessed using a measure of quality of life developed for use with children with NDD. Data from 234 parents were analysed using structural equation modelling. RESULTS: Each predictor was found to load significantly on the overall outcome variable of well-being. Parent concerns about child function were significantly related to child well-being; parents who reported more concerns about their children's functioning reported lower levels of child well-being. Unmet needs for formal supports and services were also significantly related to child well-being; parents who reported that more of their children's and family's service needs were unmet reported lower child well-being. An indirect relationship was also found between child function and child well-being. When parents reported that their formal support needs were adequately met, their children's functional difficulties had a lower impact on parent perceptions of their children's overall well-being. CONCLUSIONS: Taken together, the results of the current study enrich our understanding of well-being for children with NDD. Discussion focuses on the service implications for children with NDD and their families.

About my Child: measuring 'Complexity' in neurodisability. Evidence of reliability and validity.

BACKGROUND: About my Child, 26-item version (AMC-26) was developed as a measure of child health 'complexity' and has been proposed as a tool for understanding the functional needs of children and the priorities of families. METHODS: The current study investigated the reliability and validity of AMC-26 with a sample of caregivers of children with neurodevelopmental disorders (NDD; n = 258) who completed AMC-26 as part of a larger study on parenting children with NDD. A subsample of children from the larger study (n = 49) were assessed using standardized measures of cognitive and adaptive functioning. RESULTS: Factor analysis revealed that a four-component model explained 51.12% of the variance. Cronbach's alpha was calculated for each of the four factors and for the scale as a whole, and ranged from 0.75 to 0.85, suggesting a high level of internal consistency. Construct validity was tested through comparisons with the results of standardized measures of child functioning. Predicted relationships for factors one, two and three were statistically significant and in the expected directions. Predictions for factor four were partially supported. AMC-26 was also expected to serve as an indicator of caregiver distress. Drawing on a sample of caregivers from the larger study (n = 251) the model was found to be significant and explained 23% of the variance in caregiver depressive symptoms (R(2) = .053, F (1, 249) = 14.06, P < .001). CONCLUSIONS: Based on these observations, the authors contend that AMC-26 may be used by clinicians and researchers as a tool to capture child function and child health complexity. Such a measure may help elucidate the relationships between child complexity and family well-being. This is an important avenue for further investigation.

Parenting children with neurodevelopmental disorders and/or behaviour problems.

BACKGROUND: Parenting behaviours influence child well-being and development. However, much of the research on parenting behaviours and their correlates has focused on caregivers of healthy, typically developing children. Relatively less is known about the parenting behaviours of caregivers of children with chronic health conditions. OBJECTIVE: To examine and compare three parenting behaviours (positive interactions, consistency and ineffective parenting) among caregivers of children with neurodevelopmental disorders and/or externalizing behaviour problems, before and after accounting for child and family socio-demographic characteristics. METHODS: Participants (n= 14 226) were drawn from the National Longitudinal Survey of Children and Youth, a long-term study of Canadian children that follows their development and well-being from birth to early adulthood. Children (and their caregivers) were divided into four groups according to the presence of a neurodevelopmental disorder (NDD; n= 815), the presence of an externalizing behaviour problem (EBP; n= 1322), the presence of both conditions (BOTH; n= 452) or neither of these conditions (NEITHER; n= 11 376). RESULTS: Caregivers of children in the NEITHER group reported significantly higher positive interaction scores and lower ineffective parenting behaviours than caregivers of children in any of the other three groups. Caregivers of children in the EBP and BOTH groups reported similar levels of consistency, but significantly lower levels than caregivers of NDD or NEITHER children. These associations largely remained after accounting for child and family socio-demographic characteristics, with two exceptions: caregivers' reports of positive interactions were no longer significantly associated with child's NDD and BOTH conditions. CONCLUSIONS: Parenting children with multiple health conditions can be associated with less positive, less consistent and more ineffective parenting behaviours. Understanding the factors that are associated with the challenges of caring for these children may require additional research attention.

Contextual influences of parenting behaviors for children with neurodevelopmental disorders: results from a Canadian national survey.

PURPOSE: This population-based study examined correlates of three parenting behaviors (positive interactions, consistency, and ineffective parenting) that have been shown to differ in children with neurodevelopmental disorders (NDDs), with and without externalizing behavior problems (EBPs), as compared to children with neither condition. METHOD: The sample of children aged 4-11 (N = 14,226) was drawn from the Canadian National Longitudinal Survey of Children and Youth (NLSCY). Analyses examined the associations of child, parental, and social context factors with parenting behaviors, and whether they differed by child health group. RESULTS: Child age, family functioning, and social support variables were significant predictors of all three parenting behaviors. Significant interaction effects highlight the importance of the child's sex, birth order, and support received from community or social service professionals, and that these factors have differential impacts on parenting behaviors depending on the child's health group. CONCLUSIONS: Other Child, parent, and social context factors are associated with parenting behaviors but these associations vary by the child's health group. Parenting behaviors differ for children with NDDs with and without EBPs. These findings offer important implications for practice and research and point to the importance of considering multiple contexts of influence, as well as their interactions, in understanding differences in parenting behaviors.