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

Authors: EMİNE BAHAR BİNGÖLER PEKCİCİ, EZGİ ÖZALP AKIN, FUNDA AKPINAR, GAMZE HAYRAN, CANSU KELEŞ, BETÜL YAĞBASAN, NAZMİYE KURŞUN, İLGİ ERTEM

Abstract: Background/aim: Physicians 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 methods: In 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. Results: All 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

Keywords: Down syndrome, disability, children with special needs, family-centered care, measure of process of care (MPOC)

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