Evaluation of Primary Caregiver Parents' Quality of Life in Pediatric Palliative Care with the WHOQOL-Bref (TR)

Objective: Pediatric palliative care is a top-level care system that focuses on improving the quality of life of the child and family. Quality of life is an expression of individual well-being based on an individual's assessment of their own life. It includes satisfaction in all areas of life, including physical and mental health, environment, and social areas. Methods: The study was conducted with the primary caregiver parents of children admitted to the pediatric palliative care service of the Health Science University Izmir Dr. Behcet Uz Child Disease and Surgery Training and Research Hospital. The Turkish version of the World Health Organization Quality of Life WHOQOL-Bref (TR) questionnaire was applied with a personal information form containing demographic data. Results: Eighty-four patients were hospitalized in the specified period, and 67 primary caregiver parents agreed to participate in the study. Total scores evaluated by WHOQOL-Bref (TR); the physical domain was 19.95 +/- 3.30, the mental domain was 19.95 +/- 3.18, the social domain was 10.11 +/- 2.40, and surrounding area was 16.38 +/- 2.82. The physical and psychological subgroups' scores were statistically significantly higher in primary caregiver parents with good social support (P <.005). Conclusion: It has been determined that in order to increase the quality of life and care of children with life-limiting and/or threatening diseases, the quality of life of primary caregiver parents should be increased, and "social support" procurement, which has the most important effect on the quality of life, is an important need.