Soins palliatifs et médecine

Abstrait

A Qualitative Approach to Understanding Quality of Life in Pediatric Palliative Care

Elana E Evan*, Elise Calonico, Jolene Tan and Lonnie K Zeltzer

Helping pediatric patients achieve an optimal quality of life despite their serious illness is a hallmark for providing excellent pediatric palliative care. There is controversy regarding how to define pediatric Quality of Life (QoL) and how to assess this construct in children. Currently, there is no pediatric QoL instrumentation that has been standardized on population children with advanced disease. This qualitative study sought to determine what is quality of life from the perspective of pediatric patients with advanced disease? Twenty-nine pediatric patients (child mean age 14.7 years, range 9-21 years) participated in the current study. Through analysis, we identified three domains of QoL (physical, psychological, social) and a lifestyle values category. These results are important first steps for providing direction to future studies aimed at modifying QoL instruments in order to better understand the pediatric patient’s illness experience and improve QoL when they are facing advanced disease.