Global services and support for children with developmental delays and disabilities: Bridging research and policy gaps

Collins, Pamela Y.; Pringle, Beverly; Alexander, Charlee; Heymann, Jody; Huebner, Gillian; Kutlesic, Vesna; Polk, C. J.; Sherr, Lorraine; Shih, Andy; Sretenov, Dragana; Zindel, Mariana

doi:10.1371/journal.pmed.1002393

Cited by 52 publications

(39 citation statements)

References 45 publications

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“…Recently the number of children with DD in Russia has been increasing (Isaev, 2017), mainly due to medical advances and assistance for premature and somatically weakened children. It is also necessary to note that children who are initially diagnosed as at risk are always in need of further special support, otherwise the positive effect of early medical care may be lost (Collins et al, 2017). It is well known that diagnosis at an early age is significant for intervention: the younger the child, the more flexible his/her brain and the richer the compensatory possibilities (Dennis, 2013).…”

Section: Introductionmentioning

confidence: 99%

Elaboration of Screening Scales for Early Diagnosis of Developmental Delay in Four- to Five-Year-Old Children in Russia

Nasledov¹,

Miroshnikov²,

Tkacheva³

2018

Psych. Rus.

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Background. While various screening systems are used worldwide for early detection of developmental delay (DD), Russia still does not have such a screening system in place, even though a good prognosis for the cognitive development of a child with DD depend strongly on the time of the diag nosis. Objective. The objective of this study was to create a system to rapidly monitor the mental development of four-to five-year-old Russian children, a system that allows for the use of modern information technologies to obtain reliable results. Design. This study was carried out with a sample of 1,232 children. For data collection, the multifactor study of mental development tool was used as a part of a software complex for longitudinal research. This tool included a much more extensive set of tasks than in traditional tests of abilities, allowing for a wider variation of the factor structure. For the 4-year-olds, 236 tasks were used and 349 for the 5-year-olds. Factor and discriminant analysis were carried out to construct scales for each age group (6-7 points in each), which most accurately predict the diagnosis (Norm/DD). Structural equation modeling (SEM) was used to verify the prediction model. Results. Two scales were elaborated, which coincided with the type of variables combined in each of them regardless of age (for 4-years-simpler and for 5-years-more complex): logical reasoning, motor skills, and general awareness (listed in descending order of contribution to the prediction). SEM confirmed that the selected scales are indicators of the general ability factor, which is the main predictor of the diagnosis. Conclusions. Two short scales for the rapid diagnosis of DD in preschool children were constructed, allowing the use of computer technology to timely identify the risk group among 4-and 5-year-olds with high sensitivity and specificity of the forecast (not lower than 95%).

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Section: Introductionmentioning

confidence: 99%

Elaboration of Screening Scales for Early Diagnosis of Developmental Delay in Four- to Five-Year-Old Children in Russia

Nasledov¹,

Miroshnikov²,

Tkacheva³

2018

Psych. Rus.

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“… 4 Accurate data are difficult to find, especially in LMICs where most of the world’s children reside. 5 …”

Section: Introductionmentioning

confidence: 99%

Thailand’s national universal developmental screening programme for young children: action research for improved follow-up

et al. 2018

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IntroductionIn low-income and middle-income countries, it is estimated that one in every three preschool-age children are failing to meet cognitive or socioemotional developmental milestones. Thailand has implemented a universal national developmental screening programme (DSPM) for young children to enable detection of developmental disorders and early intervention that can improve child health outcomes. DSPM implementation is being hampered by low attendance at follow-up appointments when children fail the initial screening.MethodsAction research, using qualitative methods was conducted with 19 caregivers, 5 health workers and 1 chief at two Health Promotion Hospitals to explore the factors affecting attendance at follow-up appointments. Transcripts and notes were analysed using descriptive content analysis. Findings were then discussed with 48 health workers, managers, researchers and policymakers.ResultsThe high workload of health workers during busy vaccination clinics, and inadequate materials prevented clear communication with caregivers about the screening, how to stimulate child development and the screening result. Caregivers, particularly grandparents, had a lack of understanding about how to stimulate child development, and did not fully understand failed screening results. Caregivers felt blamed for not stimulating their child’s development, and were either worried that their child was severely disabled, or they did not believe the screening result and therefore questioned its usefulness. This led to a lack of attendance at follow-up appointments.ConclusionTask-sharing, mobile health (mhealth), community outreach and targeted interventions for grandparent caregivers might increase awareness about child development and screening, and allow health workers more time to communicate effectively. Sharing best practices, communication training and mentoring of DSPM workers coupled with mhealth job aids could also improve caregiver attendance at follow-up. Engagement of caregivers in understanding the barriers to attendance at follow-up and engagement of stakeholders in the design and implementation of interventions is important to ensure their effectiveness.

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“…20 Several recent articulations by health sector actors strengthen the efforts to position neurodisability professionals as children's rights advocates. [21][22][23][24][25][26][27][28] Although reflecting the unfortunate tradition of separating the general and disability health fields, the very insightful and compelling rights-and equity-based platform and action cycle proffered by an illustrious international panel 21 even quite recently relied solely on the UNCRC; it was silent on disability or the UNCRPD or specific ECD levers that bridge and strengthen the agenda. More recently, the engagement with nurturing care initiatives appears in promising initiatives such as the International Society for Social Pediatrics and Child Health Bonn Declaration on nurturing care and ECD.…”

Section: Avenues For Innovation and Collaborationmentioning

confidence: 99%

Nurturing care framework for inclusive early childhood development: opportunities and challenges

Wertlieb

2019

Develop Med Child Neuro

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The nurturing care framework (NCF) for early childhood development (ECD) launched at the 2018 World Health Assembly opens a range of opportunities and challenges for child neurodisability professionals. The United Nations Convention on the Rights of the Child and Convention on the Rights of People with Disabilities frame these pathways for collaboration and progress. This overview of the NCF and its contexts in inclusive ECD identifies avenues for innovation and collaboration in harmony with the field's clinical, scientific, and advocacy agendas. One avenue involves enhancing the alignment between health systems and human rights. A second avenue involves neurodisability professionals engaging with nurturing care as leaders, partners, and implementers. What this paper adds Participation and leadership by neurodisability professionals can enhance quality and impact. A rights‐based framework that includes young children with disabilities and their families is widely encouraged.

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Global services and support for children with developmental delays and disabilities: Bridging research and policy gaps

Abstract: Pamela Collins and colleagues explain the research and policy approaches needed globally to ensure children with developmental delays and disabilities are fully included in health and education services.

Cited by 52 publications

References 45 publications

Elaboration of Screening Scales for Early Diagnosis of Developmental Delay in Four- to Five-Year-Old Children in Russia

Elaboration of Screening Scales for Early Diagnosis of Developmental Delay in Four- to Five-Year-Old Children in Russia

Thailand’s national universal developmental screening programme for young children: action research for improved follow-up

Nurturing care framework for inclusive early childhood development: opportunities and challenges

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