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

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 cross-sectional design, children with Down syndrome seen at Ankara University Developmental Pediatrics Division (AUDPD) in the sixmonths starting September 2019 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 <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). 2 Conclusions: Our findings imply that limitations in family-centeredness of community services for young children with Down syndrome. Deficiencies of services particularly for children with less educated mothers need to be urgently resolved.

Adaptation of the Measure of Processes of Care for the Evaluation of Family-Centeredness of Services in India

“…This along with This, along with content validity for locally translated versions of the MPOC-20, has been established in other LMICs, such as Brazil, Jordan, and Turkey, and provides indirect evidence for the content validity of the Hindi MPOC-20. 12,14,22 Notably, despite including a selected population of families with higher education in India, the MPOC-20 could not be used as a self-administered tool as has been the case in Western countries. 27 A large proportion of caregivers were not able to self-administer the MPOC-20 items and needed assistance.…”

“…This along with This, along with content validity for locally translated versions of the MPOC-20, has been established in other LMICs, such as Brazil, Jordan, and Turkey, and provides indirect evidence for the content validity of the Hindi MPOC-20. 12,14,22…”

“…Both researchers involved in data collection were trained to follow a standardized procedure for aiding the caregivers in completing the Hindi MPOC-20 when required. 22 For this study, caregivers either completed the MPOC-20 independently or requested assistance from the researchers to read the MPOC-20 items to them and to record the answers. Caregivers were asked if they were able to read and/or understand Hindi and if they required assistance in completing the Hindi MPOC-20.…”

Exploring the Influential Factors Impacting the Provision of Family-Centered Care for Children with Cerebral Palsy in Saudi Arabia

“…The provision of FCC may be influenced by many factors related to the child, family, or environment. Previous research has shown that the extent of the family-centeredness of care is associated with the parents' educational level and family income/socioeconomical status, but not related to a child's secondary impairments [15,16].…”

“…FCC is an approach to health care that emphasizes partnership with the parents in the care of their child. This approach encourages the family's active participation in recognizing the requirements and key concerns of their child's care, and subsequently strategizing interventions tailored to those needs [10,[12][13][14][15][16]. The basic principles of FCC include treating families with respect; parent-professional partnerships; effective communication; and providing treatment choices to enable families to make informed decisions [12][13][14]17,18].…”