Understanding Support Systems and Challenges: An Exploratory Study of Families with a Member Affected by Down Syndrome

Abstract

Background: Families with a member who has Down syndrome face unique challenges and require specific forms of support to help them navigate their daily lives.

Objective: This study investigates the support systems and challenges confronted by families with a member diagnosed with Down Syndrome in Marawi City, Lanao del Sur, Philippines.

Methods: Employing a qualitative phenomenological approach, the study is guided by Roy's Adaptation Model and Family Systems Theory. A total of ten parents or caregivers with a family member diagnosed with Down Syndrome were purposively sampled for semi-structured interviews. Data collection transpired from February 12 to February 25, 2024. Ethical guidelines were followed, and content and thematic analysis were utilized for data interpretation.

Results: The study identified three major themes: Support System for Families with a Member with Down Syndrome, Challenges Experienced by Families, and Perceptions and Experiences of Inclusion and Acceptance. Findings highlighted limitations in accessing professional support services, financial strains, educational barriers, social stigma, and discrimination. However, informal support networks and cultural-religious influences were noted as significant sources of assistance and resilience.

Conclusion: The research underscores the need to address limitations in professional support services, mitigate challenges in medical care and education, combat social stigma, and foster inclusion and acceptance. Insights from this study can inform tailored interventions to enhance the well-being of individuals with Down Syndrome and their families.