Quality of care and relationships as reported by children with cancer and their parents

Between 2010 and 2011, a non-probability convenience sample of 85 children and adolescents between the ages of 7 to 18 years, who were receiving treatments at the inpatient or outpatient facilities of a tertiary pediatric cancer center in Lebanon, were enrolled in the study. A total of 85 parents or significant others directly involved in the care of these children were also included. The Needs at End of Life Screening Tool (NEST) questionnaire was used to evaluate the quality of palliative care (PC) provided to the children. Parents, adolescents, and children reported high quality medical care. Children reported least satisfaction with participation in decision making, while parents were least satisfied in securing a hospital bed. Spirituality was high among all participants. Parents reported not preparing those around them for the possibility of the child’s death. The study has shown that parents have moderate financial problems and encounter difficulties in getting insurance to cover expenses of child’s illness.