الفهرس 
INTRODUCTION AND AIM OF THE STUDYOnly 14 pages are availabe for public view
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Abstract
Early childhood is a critical stage of development that forms the basis for children’s future well-being and learning. Therefore, early childhood development needs to be under the light of assessment, monitoring, and encouraging methods of its stimulation and early intervention for at-risk children.
The SDGs put the ECCE as one of the goals that should be achieved by 2030, and mandate systematic monitoring of the health and wellbeing of all children to achieve optimal early childhood development.
On a global scale, the prevalence estimates of developmental delay in the pediatric population range between 5% and 15%. Biological and psycho-social risk factors that influence the development of children are more common in developing countries, and in such countries, over 200million children under the age of 5 cannot meet their developmental milestones.
According to the lancet global health 2018, the number of cases in Egypt with developmental disabilities was 1.1 million children under the age of 5 and the number of YLDs was 89.5 thousand in 2016.
Developmental neuroscience shows how early biological and psychosocial experiences affect brain development. The foundations of brain architecture are laid down early in life through dynamic interactions of genetic, biological, and psychosocial influences, and child behavior.
Interventions and support for the whole family are important and can positively affect a family and a child’s quality of life. The ‘F-words’ – function, family, fitness, fun, friends, and future – illustrate the importance of support tailored to each family and child.
Many international classifications described the health status and performance of children in terms of diseases, disorders, or functional levels e.g. ICF-CY. ICF-CY is divided into two parts: (a) Functioning and Disability, and (b) Contextual Factors. Functioning and Disability contains two components: Body Systems (Function and Structure) and Activities/Participation. Contextual Factors also contain two components (Environmental and Personal factors).
Components in the ICF-CY are operationalized through qualifiers. All components are quantified using a generic scale ranging from 0 (no difficulty) to 4 (complete difficulty).
In perspective, WHO ICF-CY codes can constitute a basis for interactive evaluation of childhood disability with parents participating in evaluating their own child’s disability and at the same time sharing their knowledge and experience in networks with medical staff and health and social workers.
Elligsen (2011) developed a code set aimed to describe essential ICF-CY codes for specific age groups in childhood.ICF developmental codes Identify limited ICF-CY codes by expert consensus to document essential physical and developmental characteristics, functions, and skills of children by four developmental age groups (0-2, 3-5, 6-12, 13-17 years).
The aim of the present study was an application of a designed ICF-CY assessment tool to evaluate children below 6 years old, having a developmental delay, and attending the Early Intervention Center for Childhood (EICC) in Alexandria. The tool based on the ICF-CY developmental code set was used to assess the health and functioning profile of children and to identify the children’s unmet needs. Also, the tool was applied to show the ICF-CY functioning status of different ICD-11 diagnoses.
An observational cross-sectional study was designed to assess 151 children under 6 years of age in the EICC using a semi-structured interview directed to the caregiver and the child and based on the ICF-CY developmental code set.
The results illustrated that the children were in the age which ranged from 3 months to 69 months, and nearly 67% of them were males. About 7% & 6% of fathers and mothers respectively were illiterate. The majority of fathers (97.4%) were working but, nearly 85% of mothers were unemployed. Nearly one-quarter of children came from consanguineous marriage and about 56% of the children had a history of parental related health problems mainly neurodevelopmental and behavioral disorders. The main causes of poor parent-child interaction (PCI) were excessive exposure to social media (e.g. TV, mobile) and exposure to child abuse or neglect (Tables 4.1,4.2,4.3).
According to the maternal reproductive history/antenatal history of the index pregnancy, there were no noticeable findings except that nearly 77% of the mothers depended on the private health facilities for antenatal care. in addition, nearly 48% of the mothers had maternal health problems mainly preeclampsia and gestational diabetes mellitus (GDM) (Table 4.4).
Regarding the natal and post-natal history of the index pregnancy, 82% of mothers delivered their children by cesarean section (CS), and the main indications were history of previous CS and presence of medical problems during pregnancy or labor. Natal complications were mainly neonatal e.g. no feeding within 1 hour after birth and no cry at birth as indicators. Most of the children (91.4%) were full-term and the majority of the children (76.3%) had normal birth weight and about 40% of the children were admitted to NICU mainly because of jaundice, neonatal sepsis, and low birth weight (Tables 4.5,4.6 and Figure 4.2).
Except for the infectious diseases (37.7%), the other comorbidities in the past medical/surgical history were less than one-third (range from 15 -28%) of the children. However, the main infections encountered were chest infections and gastroenteritis, and the main types of allergic diseases were allergic rhinitis and bronchial asthma, and for the chronic/recurrent diseases, bronchial asthma and epilepsy were the highest. Previous operations or accidents were mainly ear- nose and throat surgeries while the main causes of hospital admission were because of pneumonia, convulsions, and gastroenteritis (Table 4.8 and Figure 4.3,4.4,4.5,4.6,4.7).
The health determinants that were significantly associated with lower DQ of the developmental domains were the age, maternal unemployment, consanguineous marriage, history of abortion, fewer antenatal care visits, home deliveries, history of neonatal complications, prolonged NICU admission, history of feeding problems during the first 3 years, history of infectious diseases, history of allergy and history of hospital admission (Tables 4.12 to 4.17).
Among the four domains of Denver Developmental Screening Test II (DDST-II), language delay had the highest frequency (92% of the children) followed by a fine motor delay (71.5% of the children) (Table 4.9).
Regarding the ICD-11 classification, the most prevalent diagnosed health problems were undernutrition (66.2% of the children), sleep disturbance, not elsewhere classified (24.5% of the children), change in bowel habit (constipation and diarrhea) in 23.8% of the children, the short stature of the child in 22.5% of the children, allergic rhinitis in 13.9% of the children, asthma in 10.6% of the children and iron deficiency anemia in 10.6% of the children (Table 4.11).
Regarding the ICF-CY functioning profile, the activity and participation, the majority of children with DD (97.4%) had an impaired function in communication mainly speaking and conversation followed by functions of learning and applying knowledge (94% of the children) mainly acquiring language and acquiring concepts, the mobility (78.8% of the children) mainly Fine hand use, the major life areas (70.7% of the children) mainly preschool education, the general tasks and demands (67.7% of the children) and the least impairments were with self-care (59.6% of the children) mainly toileting and interpersonal interactions and relationships ( 55% of the children) mainly basic interpersonal interactions (Figure 4.8 and Table 4.20).
Communication was the most severe impairment with a mean qualifier score of 7.64 ± 5.39 and the least severe one was for the interpersonal interactions and relationships with a mean score of 1.54 ± 1.83 (Figure 4.7).
Regarding body functions, the majority of children had an impaired voice and speech functions (90.7% of the children) followed by the mental functions (81.5% of the children) mainly attention functions and perceptual functions, the neuromuscular skeletal and movements related functions (68.2% of the children) mainly control of voluntary movement functions and the involuntary movement reaction functions, the functions of the digestive, metabolic and endocrine systems (55.6% of the children) mainly ingestion functions and defecation functions, the sensory functions and pain (48.3% of the children) mainly sensation of pain and touch functions, functions of the cardiovascular, hematological, immunological and respiratory systems (33.1% of the children) mainly respiration functions and the least impairments were with the genitourinary and reproductive functions (10.7% of the children) (Figure 4.11 and Table 4.21).
Mental functions were the most severe impairment with a mean qualifier score of 4.58 ± 4.10 and the genitourinary and reproductive functions with a mean score of 0.19 ± 0.56 was the least severe (Figure 4.10).
According to the environmental factors, the top five barriers faced the children were 1- the health services (79.3% of the children) followed by 2- products and technology for education (68.1% of the children), 3- products and technology for communication (66.9% of the children), 4- the individual attitudes of the immediate family (56.3% of the children), and 5- problems related to food and drink (55.6% of the children) (Table 4.24).
About the performed services, 79.5% of the children performed previous investigations, and they were mainly those who had gross motor and personal social delays. The more the severity of delay in all developmental domains, the more investigations were performed (Tables 4.32, 4.37).
Social support services were facilitators in 86% of the children mainly from informal care of the child by family and friends, and childcare service centers. However, these services were barriers in 32.4% as the children needed available and easy to access nurseries or daycare centers. Children with ASD and ADHD were the most likely to need social support services (Tables 4.24, 4.30).
All of the children with CT 21, ASD, and CP received previous interventions and most of the children (90.6%) received three interventions or less while the least ones who received interventions were the children with DSLD (Table 4.38).
The role of the public service in the provision of intervention to children with DD was far less than the private one. Most continued interventions were the medical/surgical ones followed by special education programs and habilitation services. The least continued intervention was the services for family-focused support (Table 4.34).
The present study showed that the types of difficulties that hindered the usage or continuity of the intervention represented mainly in financial problems, parental care of other siblings, transportation problems, poor staff and service quality, parental issues (e.g. no time for care, travel, refusal of the service, poor awareness, family conflicts), child-related factors (e.g. difficult behavior, health condition) and stigma (Figure 4.15).
There was a significant gap between the received and needed interventions except for the group of medications. The most significant need was the services concerned with family-focused support (p<0.01) mainly in family counseling and education. The main needed medical/surgical interventions were nutritional therapy and referral to other health care specialties, and the main needed habilitative interventions were the speech and skills development training sessions. Nearly 54% of the children needed more than three types of interventions mainly the children with ASD and ADHD (Tables 4.35, 4.38).
Conclusion and recommendations:Using the ICF-CY in assessing the needs of children with developmental delay gave an overview of the nature of unmet services. The results revealed an association between some of the health determinants and developmental delay that pointed to the priority to support the reproductive and maternal health services, the neonatal care, the nutritional programs, and the medical management of infections and allergies.
Using both ICD-11 classification and ICF-CY, each ICD-11 diagnosis appeared to have its functional characteristics and accompanying environmental barriers that should be exposed to more analysis to determine the targets of the early intervention programs. The ICF-CY analysis for the children with developmental delay illustrated the children’s functional needs in their daily life activities such as impaired communication and deficient the usage of assistive technology to support it.
There was a big gap between the existing services and the needed ones especially with the family-focused support services and many difficulties were faced by the caregivers to continue the early intervention programs mainly financially.
Further research is needed to support and facilitate the use of these international classifications in assessing children to develop appropriate health plans for them. Also, in-depth qualitative studies are needed to evaluate the unmet needs and the reasons for non-compliance or discontinuation of the received intervention.