Palliative Care in Children with Severe Neurological Disorders: A Supportive Approach to Improving Quality of Life

Introduction: Congenital and neurological disorders are among the most common underlying diagnoses in children with life-threatening conditions. These children have an urgent need for relief from distressing symptoms, including pain, swallowing and digestive difficulties, excessive secretion buildup, dyspnea, seizures, and sleep disturbances. Consequently, children with severe neurological disorders and their families face unique needs that are effectively addressed by palliative care teams. Therefore, this narrative review was designed with the aim of exploring palliative care in children with severe neurological disorders. Materials and Methods: The present narrative review was conducted based on articles published between ۲۰۲۰ and ۲۰۲۵. The information sources included PubMed, Scopus, and the Google Scholar search engine. The initial search was performed using the keywords children, palliative care, and severe neurological disorders, yielding a total of ۲۲۴ articles. After screening, ۷ studies met the eligibility criteria for final inclusion. The process of study selection and screening was reported in accordance with the PRISMA flow chart. Results: According to the principles of palliative care, it is essential not only to provide care and support for the child with a life-threatening condition but also to extend support and attention to the family. Thus, palliative care is both patient-centered and family-centered, aiming to improve quality of life throughout the course of illness. Comprehensive palliative care for these children encompasses symptom management, respite and supportive care, normalization, safety, empowerment, and coping with illness. Furthermore, establishing honest and empathetic communication in palliative care not only reduces parental fear and anxiety but also enables healthcare providers to better understand the child's unique behaviors and needs in a way similar to the parents—since these children are often unable to express their discomfort as healthy children do. Nevertheless, one of the major challenges faced by parents of children with severe neurological disorders is the acceptance of and adjustment to their child's condition. Receiving palliative care helps parents in this regard, allowing them to find ways to cope while still experiencing moments of joy in life. Conclusion: Palliative care plays a vital role in addressing the complex and multifaceted needs of children with severe neurological disorders and their families. By focusing on symptom management, psychosocial support, effective communication, and family empowerment, palliative care not only improves the quality of life for these children but also provides parents and caregivers with the resources and resilience needed to cope with their child's condition.