Život ve stínu nemocného dítěte: péče o sourozence dětí v paliativní péči

Life in the shadow of a sick child: Caring for the siblings of children in palliative care

Abstract

Context. Psychological care is an integral part of pediatric palliative care (PPC), and the 2022 international standards specifically highlight its necessity for the siblings of seriously ill children. However, knowledge regarding psychological support for siblings remains limited.

Aim. The aim of this study was to evaluate the support provided to healthy siblings by the Pediatric Supportive Care Team at Motol University Hospital.

Methods. Data were collected through an anonymous online questionnaire, with 73 parents (respondents) participating. The research was approved by the Ethics Committee of Motol University Hospital.

Results. Most parents (79%) reported having the opportunity to discuss the siblings of the sick child, most often to consult on how to inform siblings about the illness (60%) or worsening of the child’s health (47%). Direct meetings between siblings and a psychologist occurred in 33% of families, with the main objectives being assessment of the sibling’s emotional state (62%) and understanding of the illness (42%). Parents rated consultations with the psychologist for themselves as beneficial (88%) and fully meeting expectations (100%), and similarly evaluated the care provided to the sibling positively (91%). The main limitations of psychological care reported by parents were lack of time (50%) and limited number of sessions (33%).

Conclusion. The study suggests that psychological support for siblings at Motol University Hospital is perceived by parents as high-quality and largely in line with international standards, yet there remains room for improvement, particularly in the availability and frequency of direct work with siblings.