Family Self-Support in Managing Down Syndrome Children: A Qualitative Study

Area of Science:

• Genetics and Developmental Disorders
• Family Studies and Social Support
• Qualitative Research Methodologies

Background:

• Down syndrome (DS) is the leading genetic cause of intellectual disability.
• Children with DS require significant family support due to their unique needs.
• Limited qualitative research exists on family self-support strategies for DS.

Purpose of the Study:

• To explore and understand the self-support methods employed by families of children with Down syndrome.
• To identify challenges and needs of families raising children with DS.
• To provide insights for improving the quality of life for individuals with DS and their families.

Main Methods:

• Qualitative content analysis approach.
• Purposeful sampling of 26 participants (15 mothers, 6 fathers, 3 sisters, 2 brothers).
• Data collection through semi-structured interviews conducted between 2022-2023.

Main Results:

• The overarching theme identified was 'Family self-supporting in protecting Down syndrome children'.
• Key subthemes included seeking information and support, prioritizing child's health, leveraging religious beliefs, moral education for self-support, enhancing familial support, and promoting social interactions.
• Families are the main resource for meeting the needs of children with DS through effective self-support.

Conclusions:

• Families effectively manage challenges and meet the needs of children with Down syndrome through self-support.
• The study offers practical self-support methods for families of children with DS.
• Recommendations include strengthening screening, increasing health insurance, and improving resource distribution for better quality of life and reduced healthcare costs.