LOC11:02
08:02 GMT
By Salman Al-Mutairi
KUWAIT, Feb 10 (KUNA) -- Caring for children with complex and chronic conditions is considered one of the rare, modern medical specialties.
It focuses on children with severe disabilities and complex, long-term medical conditions, providing comprehensive and coordinated care that contributes to improving quality of life of children and their families through an integrated approach that takes into account health, psychological and social aspects, placing needs of the child and family at core of care.
This specialty is based on empowering and supporting families to understand the nature of their children's conditions and to deal with them in a scientific and safe manner through health education and continuous training.
This helps families better comprehend their children's health conditions, reduces the psychological and physical burdens associated with daily care and supports their ability to make appropriate medical decisions.
The specialty of complex and chronic pediatric care relies on the concept of sustainable care that accompanies the child through different stages of life by coordinating efforts among various medical specialties and providing integrated therapeutic and rehabilitation services inside and outside the hospital, ensuring continuity of care and improving the quality of life for children and their families.
Dr. Ahmad Al-Jaafar, a specialist in complex and chronic pediatric care and pediatric palliative care at Ministry of Health, told the Kuwait News Agency (KUNA) this specialty is considered one of the rarest medical specialties worldwide due to its delicate humanitarian nature and its direct connection to the quality of life of children and their families.
Official recognition of the specialty dates back to 2007, and the number of specialists remains limited globally.
Dr. Al-Jaafar, the only specialist in this field in Kuwait and head of the Complex and Chronic Pediatric Care Program at Jahra Hospital, explained that the specialty focuses on children suffering from severe disabilities or complex and chronic medical conditions, such as physical and motor disabilities and conditions requiring permanent medical devices like ventilators and feeding tubes.
He said the primary goal was to improve the child's health and quality of life, while also supporting and assisting families medically, psychologically and socially.
He highlighted the importance of establishing a comprehensive national program based on international recommendations in this field to serve this group of children.
He noted that the program, the first of its kind in Kuwait, was established at Jahra Hospital following a comprehensive study of the needs of different areas, which revealed that the governorate includes a large number of such cases.
Dr. Al-Jaafar stated that the program provides integrated services, including care for hospitalized children, outpatient clinics, home care, as well as continuous follow-ups over the phone and digital health monitoring for families, contributing to reassurance and rapid intervention when needed.
He explained that the program relies on a multi-disciplinary medical team that includes pediatricians, physical therapists, occupational therapists, speech and swallowing therapists and nutrition specialists, in addition to physicians from other specialties such as pulmonology and neurology.
This integration helps reduce families' suffering and spares them the burden of moving between different clinics by providing services in one location.
He added that home care was one of the program's most key components, with medical services provided inside homes for children who are unable to visit the hospital. These services include medical follow-up, sample collection, treatment provision and vaccinations, which helped ease the burden on families and improve children's quality of life.
Dr. Al-Jaafar also noted that the program works on early discharge planning to avoid unnecessarily long hospital stays, in addition to organizing a smooth transition of care to adult services when patients reach the appropriate age, ensuring continuity of treatment and uninterrupted services.
He explained that the program currently serves more than 85 children, with new cases enrolled weekly according to specific medical criteria, including medical fragility, chronic illness, or involvement of more than one vital organ system.
The ages of beneficiaries range from birth to 14 years, and may extend to 18 years under certain medical conditions.
Dr. Al-Jaafar said the program's outcomes have positively impacted children and their families.
Periodic surveys have shown parental satisfaction and noticeable improvement in the level of care and ease of access to services. Several parental suggestions have been implemented, including the establishment of a specialized training room to prepare families before their children are discharged from hospital.
He expressed hope the program will be set up in all hospitals nationwide and that a comprehensive national system for caring for children with complex and chronic conditions will be established, enhancing equity in healthcare delivery and embodying the humanitarian dimension of Kuwait's healthcare system.
For her part, pediatric and pediatric intensive care specialist and Head of the Pediatric Intensive Care Unit at Jahra Hospital, Dr. Eman Al-Hashemi, told KUNA the relationship between the pediatric intensive care team and the program represents an advanced model of integrated healthcare based on effective partnership and close coordination from the moment a child is admitted to intensive care.
This collaboration supports shared medical decision-making among multi-disciplinary teams and families, and enhances quality of care provided to children with complex conditions.
Dr. Al-Hashemi stated that this cooperation has led to tangible results, including improved patient outcomes, faster medical stabilization, reduced length of stay in intensive care, and alleviation of psychological burden on families by involving them as partners in treatment plans, and ensuring a safe and organized transition to home care or outpatient follow-up.
She added that this relationship was moving toward deeper and more structured integration within a continuous care system, extending role of pediatric intensive care team beyond hospital discharge to include early and organized follow-up of children after the critical phase, as well as monitoring and treating physical, neurological, psychological and developmental effects associated with post-intensive care syndrome.
Al-Hashemi emphasized the importance of regular participation of the intensive care team in multi-disciplinary outpatient clinic meetings, particularly for children recently discharged from intensive care, to ensure continuity of care, unified treatment decisions and reduced unplanned readmissions.
She stressed this integrated approach represents a qualitative shift in the care model for children with complex conditions, and establishes a sustainable care pathway linking critical phase with post-critical care.
This protects children from the long-term effects of intensive care, enhances their quality of life and that of their families, and reinforces the role of pediatric intensive care as a key driver for improving health outcomes across the healthcare system, she said. (end)
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