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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
09:18

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy

Published on: January 12, 2019

Family function in families of children with Duchenne muscular dystrophy

Jih-Yuan Chen1, Mary-Jo Clark

  • 1College of Nursing, Kaohsiung Medical University, Kaohsiung, Taiwan. jiyuch@kmu.edu.tw

Family & Community Health
|September 18, 2007
PubMed

Insights

Family function in Duchenne muscular dystrophy is linked to diagnosis age, caregiver health, and family support, not disability level or income. Support systems are crucial for these families.

Area of Science:

  • Pediatric Neuromuscular Disorders
  • Family Health and Functioning
  • Quality of Life Research

Background:

  • Duchenne muscular dystrophy (DMD) significantly impacts child development and family dynamics.
  • Understanding factors influencing family function is crucial for providing effective support.
  • Previous research has explored various child and family variables, but specific relationships in DMD families require further elucidation.

Purpose of the Study:

  • To examine the associations between child-related variables (disability level, age at diagnosis) and family function in DMD.
  • To investigate the relationships between family-related variables (caregiver health, income, employment, support, hardiness) and family function in DMD.
  • To identify key predictors of family function to inform support strategies for families affected by DMD.

Main Methods:

  • Cross-sectional study design.
  • Utilized established indicators: Barthel Index (disability), Duke Health Profile (caregiver health), Family APGAR (support), Family Hardiness Index (hardiness), Family Assessment Device (family functioning).
  • Statistical correlation analyses were performed to assess relationships between variables.

Main Results:

  • Family function showed a significant correlation with age at diagnosis.
  • Family function was significantly correlated with caregiver health status and family support levels.
  • No significant correlations were found between family function and child's disability level, family income, or employment status.

Conclusions:

  • Age at diagnosis, caregiver health, and family support are significant factors influencing family function in DMD.
  • Disability level, income, and employment do not appear to be primary determinants of family function in this population.
  • Interventions should focus on bolstering family support systems and addressing caregiver well-being to enhance family function.

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