Abstract:

Digital health is a vital component of the progress of healthcare and efficiency of healthcare delivery in the present era. The Oman Vision 2040 highlights the need for technology-driven healthcare services that may be easily accessed to ensure sustainable wellbeing. The Ministry of Health Research Priorities highlights the requirement for need-based action research in the field of Congenital anomalies and Genetic disorders that includes technology-based interventions for treatment and management.

Down Syndrome is a genetic condition that is associated with developmental delays in children. In Oman, the incidence of Down Syndrome is far greater than it is internationally. Raising a child with Down Syndrome involves long-term support and has unique challenges. In addition to supporting clinical care, parenting will also involve the requirement to focus on enhancing the developmental skills of children, that includes home- based training for motor, cognitive, language and behavioral aspects. Another challenge for carers is to focus on self-care that includes various psychosocial aspects. There is a lacuna of literature relating to parenting stress, caregiver burden and quality of life. In addition, there is a non-availability of technology-based applications that may contribute to empowering caregivers in providing holistic care for children with Down Syndrome.

Objectives:

The purpose of the proposed project is to develop a web-based caregiver toolkit for Down Syndrome. This proposed online platform will provide parents and caregivers with required information and guidance regarding home-based developmental skills training for children with Down Syndrome & also facilitate support for psychosocial needs. This project will be the first of its kind in the country (in line with Oman Vision 2040 and the National Health
Priorities) and the region and will greatly impact national outcomes in Down Syndrome.