Family-centeredness of services for young children with Down syndrome: an observational study from Turkey

Abstract

Background/aimPhysicians require information on the family centeredness of services for children with Down syndrome, one of the most frequently encountered disabilities in childhood. We aimed to determine the family-centeredness of services for young children with Down syndrome and using a bioecological theory framework we hypothesized that child, family and service-related factors would be associated with such services. Materials and methodsIn a crosssectional design, children with Down syndrome seen at Ankara University Developmental Pediatrics Division (AUDPD) between February 2020 and June 2020 were included if they had received services in the community for at least 12 months. Mothers responded to the measure of process of care-20 (MPOC-20) used to measure family centeredness. ResultsAll 65 eligible children were included; 57% were boys and median age was 25.0 (IQR: 18.5–38.0) months. The MPOC-20 subscale scores were highest for the “respectful and supportive care (RSC)” (median 6.0; IQR: 4.8–6.8) and lowest for the “providing specific information” (median 3.0; IQR: 4.4–6.5) subscales. On univariate analyses, maternal education <high school was associated with scores ≤4 on the RSC (OR = 6.75; 95%CI = 1.77–25.64) and “enabling and partnership” subscales (OR = 3.10; 95%CI = 1.06–9.05); income ≤ minimum wage (OR=3.94; 95%CI=1.10-14.02) was associated with scores ≤4 on the RSC. In the multivariate logistic regression model, maternal education ≤ high school was independently associated with RSC scores ≤4 (OR = 5.13; 95%CI = 1.26–20.84). ConclusionOur findings imply that limitations in family-centeredness of community service for young children with Down syndrome. Deficiencies of services particularly for children with less educated mothers need to be urgently resolved.