Experiences of caregivers and healthcare providers regarding health services for children with Down syndrome in Karachi; Pakistan

This study aimed to investigate the experiences and perceptions of caregivers seeking healthcare services for children with Down Syndrome, and those of healthcare providers offering these services in Karachi, Pakistan. A total of 23 In-depth interviews were conducted with the study participants comprising of 10 caregivers (mothers and fathers) and 13 healthcare providers (paediatricians and therapists). Participants were selected through purposive sampling and interviewed using a semi-structured interview guide at a private NGO and a tertiary care hospital. The collected data underwent deductive content analysis, guided by the socio-ecological framework, to comprehensively explore the various factors. Experiences clustered across socio‑ecological levels. Intrapersonally, caregivers moved from shock and grief to faith‑based acceptance that sustained caregiving. Interpersonally, delayed/missed diagnosis, inadequate antenatal recognition, and scarce post‑diagnostic counselling forced families to self‑navigate care amid inconsistent provider engagement. Organizationally, high costs prompted reliance on NGOs; limited specialized services, long waits, and therapist burnout constrained individualized therapy. Community factors included service concentration in Karachi, long travel/relocation, financial burden, and pervasive stigma that curtailed social inclusion and lowered parental expectations. Policy gaps included absent DS‑specific clinical/counselling guidelines and poor epidemiologic data; participants prioritized a national registry to enable follow‑up and coordination. Education was a dominant, unmet need restricted by school policies and costs and often overshadowed health concerns. This study emphasizes the urgent need for system-level reforms and coordinated interventions to improve care pathways for children with Down syndrome in Pakistan. These changes are crucial for ensuring equitable access to timely, quality care for affected families, improving health outcomes, and supporting fuller social inclusion.