| Abstract [eng] |
Pediatric cancer is still the leading cause of disease-related mortality in European children and adolescents. Even though survival rates are improving, children and their families still experience chronic physical, psychological, and emotional consequences of the disease. Pediatric palliative care (PPC) plays an essential role in improving the quality of life of the affected children with life-threatening or life-limiting illnesses. Pediatric palliative care is not only focused on pain and symptom control. Important aspects are also emotional support, communication, and spiritual well-being. Historically, palliative care was provided only at the end of life when all curative treatments had failed. Today, PPC is a holistic approach with many facets. It can begin at diagnosis and continue throughout the disease, while curative therapies are also provided. The role of patient and family empowerment in pediatric palliative care, especially in community settings, is the subject of this thesis. A systematic review of recent literature and qualitative interviews with the affected families were conducted. Results show that empowered families felt more informed, confident, and engaged in care. These families are also better able to manage care at home and act on behalf of their child's needs. Providing access to information, shared decision-making, and training in practical skills are also important components of empowerment. The reviewed research shows the importance of effective communication and recognition of the child's voice in decision-making as besides other important aspects. Empowerment not only improves psychosocial results but has also shown to reduce hospital visits and improve treatment adherence, and caregiver distress. The families value compassionate care, tailored information, and the ability to stay actively involved in their child’s care and decision-making. In general, the findings are that empowerment is an important variable in maximizing the experience and outcome of pediatric palliative care. Health systems can better meet the needs of children and families with cancer by focusing on personalized, community- and family-centered strategies. |
