Background Down Syndrome children have complex healthcare needs. There was no previous data of Pediatric Down Syndrome (PDS) in Myanmar and little is known about their health status and challenges to seek proper screening tests and health care services. Since there are no established local guidelines for PDS, limited resources and inaccessibility to specialty centers especially for those form remote areas, more health care challenges are encountered throughout the country.
Objectives To assess the health status, screening tests and follow up conditions of Myanmar Down Syndrome children
Methods One hundred and sixty six children with Down Syndrome less than 16 years were collected from regional hospitals within one year (January to December 2020).We took history, reviewed medical records and performed clinical examination. We analyzed demographic characteristics, attitude and healthcare knowledge of caregivers, screening tests and following up conditions including problems in coping of caring the children with Down Syndrome.
Results Results: Of the 166 participants, majority, (53%) were male. A total of 95(57.2%) were from urban area and most of PDS (96.4%) were cared by biological parents. Half of caregivers in this study group were nongraduate (most are middle-school education).Although (80.7%) were born at regional hospitals, some were unaware of Down Syndrome until the child developed clinical symptoms (maximum age up to 9 years) and (45%) have lack of knowledge about associated health problems. The most common medical conditions reported were cardiac (53.01%), thyroid (13.25%), visual (13.25%), hearing problems (8.43%).Screening tests done for cardiac, thyroid, vision and hearing were 72.89%, 40.96%, 25.3% and 26.51% respectively and only (21.38%) have regular follow up after diagnosis. Most of the caregivers have lack of knowledge about how to care their children, importance of screening tests according to age and regular follow up. Conditions such as financial difficulties, social problems and uneasily accessible health specialties especially for those who live in rural areas became barriers to receive proper health care services.
Conclusions More data are needed to understand health conditions, caregiver knowledge and explore the barriers in seeking proper health care services. Appropriate policies, feasible local guidelines and more education programmes to address health care challenges for Down Syndrome children are crucial to raise awareness of healthcare personals and reduce the gap to receive proper healthcare services. Screening tests according to age and long-term care programs are vastly underdeveloped in poor countries like Myanmar, it will be essential for complementing the support system and sustaining the major role that families or caregivers currently play.
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