Childhood disability population-based surveillance: Assessment of the Ages and Stages Questionnaire Third Edition and Washington Group on Disability Statistics/UNICEF module on child functioning in a rural setting in South Africa

Abstract

BackgroundEpidemiological information on childhood disability provides the basis for a country to plan, implement and manage the provision of health, educational and social services for these vulnerable children. There is, however, currently no population-based surveillance instrument that is compatible with the International Classification of Functioning, Disability and Health (ICF), internationally comparable, methodologically sound and comprehensively researched, to identify children under 5 years of age who are living with disability in South Africa and internationally. We conducted a descriptive pilot study to investigate the sensitivity and specificity of translated versions of the Ages and Stages Questionnaire Third Edition (ASQ-III) and the Washington Group on Disability Statistics/UNICEF module on child functioning (WG/UNICEF module) as parent-reported measures. The aim of our study was to identify early childhood disabilities in children aged 24–48 months in a rural area of South Africa, to determine the appropriateness of these instruments for population-based surveillance in similar contexts internationally.MethodsThis study was conducted in the Xhariep District of the Free State Province in central South Africa, with 50 carers whose children were registered on the South African Social Security Agency (SASSA) database as recipients of a grant for one of the following: Care Dependency, Child Support or Foster Care. The researchers, assisted by community healthcare workers and SASSA staff members, conducted structured interviews using forward–backward translated versions of the ASQ-III and the WG/UNICEF module.ResultsBoth measurement instruments had a clinically meaningful sensitivity of 60.0%, high specificity of 95.6% for the ASQ-III and 84.4% for the WG/UNICEF module, and the two instruments agreed moderately (Kappa = 0.6).ConclusionSince the WG/UNICEF module is quicker to administer, easier to understand and based on the ICF, it can be considered as an appropriate parent-reported measure for large-scale, population-based as well as smaller, community-specific contexts. It is, however, recommended that future research and development continues with the WG/UNICEF module to enhance its conceptual equivalence for larger-scale, population-based studies in South Africa and internationally.

Comparative use of the Ages and Stages Questionnaires in low‐ and middle‐income countries

“…(Two studies did not provide sufficient detail to ascertain setting type.) As an example, the three feasibility studies conducted in South Africa targeted participants from rural, urban, and suburban settings. Additionally, South African researchers examined the feasibility of translating the ASQ to three of the country's 11 languages (e.g.…”

“…Additionally, South African researchers examined the feasibility of translating the ASQ to three of the country's 11 languages (e.g. Afrikaans, Hindi, and Sesotho) for use with ‘middle‐class’ households, as well as families facing socio‐economic inequalities …”

“…Two studies reported conducting a forward–back translation process before commencing research, but neither study culturally adapted the ASQ before using it. In one study, the researchers reported they found it necessary to make cultural adaptations after completing three interviews . In the second, the authors suggested follow‐up studies to address potential cultural bias.…”

“…Three studies reported an estimated window of time for administration (e.g. 20–30min) . Finally, only one study discussed cost, noting that the ASQ could be ‘conducted at a low cost’.…”

“…These studies provide valuable preliminary information on the appropriateness and acceptability of a measure and, depending on the design of the study, may help inform development of screening systems and procedures, including identification of enablers and barriers to implementation and scale‐up. Three unrelated and temporally dispersed studies conducted in South Africa provide an impromptu exemplar of the value of examining feasibility, as well as the complexity of translating and adapting assessments to new contexts . Each shares a similar purpose – examining the appropriateness of the ASQ in a new language and culture – and yet each study adapts the measure to a different language for use with a unique population within the same country.…”