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

Emine Bahar Bingöler Pekcici1, Ezgi Özalp Akin1, Funda Akpinar1

  • 1Developmental-Behavioral Pediatrics Division, Department of Pediatrics, Faculty of Medicine, Ankara University, Ankara, Turkey

Turkish Journal of Medical Sciences
|November 6, 2020
PubMed

Insights

Services for young children with Down syndrome often lack family-centeredness, particularly for those with less educated mothers. Addressing these gaps in respectful and supportive care is crucial for improving outcomes.

Area of Science:

  • Developmental Pediatrics
  • Childhood Disability Services
  • Family-Centered Care

Background:

  • Physicians need data on family-centered services for children with Down syndrome.
  • Down syndrome is a common childhood disability.
  • Bioecological theory guided the investigation of child, family, and service factors.

Purpose of the Study:

  • To assess the family-centeredness of community services for young children with Down syndrome.
  • To identify factors associated with family-centered care in services for children with Down syndrome.

Main Methods:

  • Cross-sectional study of 65 children with Down syndrome receiving community services for at least 12 months.
  • Mothers completed the Measure of Process of Care-20 (MPOC-20) to evaluate family-centeredness.
  • Statistical analyses included univariate and multivariate logistic regression.

Main Results:

  • Family-centeredness scores were highest for "respectful and supportive care (RSC)" and lowest for "providing specific information."
  • Maternal education below high school was significantly associated with lower scores in RSC and "enabling and partnership" subscales.
  • Low income was also linked to lower RSC scores.

Conclusions:

  • Community services for young children with Down syndrome exhibit limitations in family-centeredness.
  • Specific deficiencies in services, particularly for children of less educated mothers, require urgent attention.
  • Improving respectful and supportive care is essential.
Abstract

Keywords:
Down syndromechildren with special needsdisabilityfamily-centered carechildren with special needsmeasure of process of care (MPOC)

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