Early childhood disability : Evaluating the burden and generating evidence for enhanced screening and support

Background: During the first years of life, neurodevelopment is susceptible for disruptions, in the form of poor nutrition, illness, and psychosocial depravation. It can also be strengthened, for example through universal actions including adequate nutrition, loving caregiving, and early childhood education.

Disability, according to the biopsychosocial model, occurs when an individual has an underlying impairment or health condition, that in interaction with personal or environmental factors result in an activity limitation or participatory restriction. This definition emphasizes that consequences for individuals can and need to be mitigated on several societal arenas. In children, these disabilities are often closely linked to the ongoing development, underscoring the need for universal as well as targeted and indicated development- strengthening actions and interventions.

Even so, children with disabilities have been excluded from mainstream developmental efforts for the better part of the 20th and 21th century. One reason for this have been the lack of information about how many children that have or are at risk of developmental disability. This lack of data is most outspoken in low- and middle-income countries, especially in the region of Sub-Saharan Africa.

These studies utilized the introduction of a new survey method to address this data gap. The child functioning module was introduced in 2017 to measure functional difficulties, which identifies children at risk of disability.

In the first study, data from the Sierra Leone Multiple Indicator Cluster Survey 2017 was used to understand how many children that were at risk of disability, and what risk- and resilience factors that could be established using the child functioning module. In the second study, the same dataset was used to explore whether children at risk of disability had increased odds of common childhood infections and looked at their healthcare seeking behaviour. The third study aimed to estimate the prevalence of being developmentally off- track or at risk of disabilities among children living in six different countries in Sub-Saharan Africa and understand how the two measures compare. The fourth study complements the three previous by exploring how stakeholders in child health living in Kampala, Uganda, envision the concept of expanded preventive child health activities.

All studies contributed to the overall aim: To better understand the characteristics of childhood disability and how to increase early child development services, with focus on an underserved region.

Methods: MICS are cross-sectional surveys that employ a multistage sampling procedure to ensure national and regionally representative samples. The data is collected through face-to-face interviews by local and trained field workers familiar to the cultural context, with data quality checks performed throughout data collection as per the MICS protocol. All MICS surveys included in these studies were part of MICS round six.

Results from the child functioning module was used to estimate if a child was at risk of disability, by using several different thresholds. Information from another module, the ECDI2030, was utilised to identify children that did not reach their age-adjusted target for being developmentally track in in health, learning and psychosocial well-being. These children were considered at risk of developmental delay.

Study one and two focus on Sierra Leone, as this was the first publicly released dataset that included the child functioning module. Study three includes datasets from Benin, Comoros, Eswatini, and Nigeria, as these were the only countries that included both the child functioning module and the ECDI2030.

Multivariable logistic regression models were fitted to estimate the crude (OR) and adjusted odds rations (AOR) with 95% confidence intervals (CI) for childhood disability and not reaching age-appropriate developmental thresholds. Weighted, pairwise ORs were also used to estimate covariation of difficulties in different functional domains. Adjustments were made depending on the research question at hand. In study three prevalence ratios of children not reaching age-adjusted developmental thresholds were estimated through Poisson regressions.

Study four utilized purposive sampling technique to recruit stakeholders in child health in Kampala, Uganda, according five pre-defined stakeholder groups. Four research assistants fluent in Luganda and English made the interviews. Thematic analysis, utilizing a top-down approach was employed following an inductive approach.

Result: The prevalence of children at risk of disability was similar in in Sierra Leone (6.6% (95% CI 5.8 - 7.6%)), Comoros (6.8% (CI 5.6-8.1%)), Nigeria (7.6% (CI 6.9-8.3%)), and Benin 8.9% (CI 8.1-9.8%). Eswatini had a substantially higher prevalence at 14.1% (CI 12.2-16.3%). Children that were either male or young were at higher risk of disability in all countries except Comoros.

The prevalence of children at risk of not reaching developmental thresholds was 52% (CI 49-55%) in Eswatini, 52% (CI 51-54%) in Nigeria, 59% (CI 58-61%) in Benin and 64% (CI 61-66%) in Comoros. Children who did not meet the criteria to be considered developmentally on track were more likely to be male, older, stunted, and from poorer households. In all countries except Eswatini, children not reaching developmental threshold more frequently had caregivers with lower levels of education.

Children at risk of disability more often failed to meet age-appropriate developmental thresholds in three of four investigated countries (Benin, Nigeria, and Eswatini).

In Sierra Leone, children at risk of disabilities had 30% higher odds (AOR 1.3, 95%CI 1.1 - 1.8) of fever compared to other children. Children at risk of severe disability had higher 60% higher odds (AOR=1.6, 95% CI 1.0 - 2.7), compared to children without functional difficulties. Children with severe functional difficulties also had a higher risk of diarrhoea (AOR=1.8, 95% CI=1.1 to 3.3).

Conclusion: There is a high prevalence of children at risk of not reaching developmental milestones, along with links to stunting and poverty in several Sub-Saharan countries. This underscores the need for continued poverty reduction, improved access to a healthy and sufficient diet, and primary prevention. The increased health and development risks for children with functional difficulties which were reaffirmed in study two and three highlights the importance of early detection and intervention to mitigate risks. Study four indicated that integrating developmental monitoring with nutrition and poverty reducing efforts into well-child visits could be an acceptable way to address these challenges.

List of scientific papers

I. Ekman AT, Sengeh PA, Webber N, Jalloh MB, Hollander AC, Newby H, Cappa C, Orsini N, Alfvén T, Frielingsdorf H. Prevalence of children under five with disabilities in Sierra Leone: insights from a population-based Multiple Indicator Cluster Survey. Disabil Health J.2023 Oct;16(4):101481. https://doi.org/10.1016/j.dhjo.2023.101481

II. Ekman AT, Cherry E, Sengeh PA, Webber N, Jalloh MB, Orsini N, Alfvén T, Frielingsdorf H. The occurrence of major infectious diseases and health care seeking among young children with disabilities in Sierra Leone using crosssectional population-based survey data. BMJ paediatrics open, 2024-06, Vol.8 (1), p.e002460. https://doi.org/10.1136/bmjpo-2023-002460

III. Anna-Theresia Ekman, Diego Yacaman Mendez, Angelina Kakooza-Mwesige, Claudia Cappa, Tobias Alfvén, Helena Frielingsdorf. Development delay and disability among young children in Sub-Saharan Africa - a comparison of two methods for identifying children at risk at population level. [Manuscript]

IV. Anna-Theresia Ekman, Lydia Kabiri, Helena Lindgren, Alma Nordenstam, Anna Wikström, Angelina Kakooza-Mwesige, Grace Ndeezi, Tobias Alfvén. Well-care visits in Kampala: A qualitative study of stakeholders' views on how to improve preventive health for young children. [Manuscript]