Quality of care, spirituality, and relationships among children with cancer and parents -

Abstract

Major improvements in treatment modalities and supportive care have led to significant improvements in survival rates for most types of childhood cancer. However, cancer and its treatment cause considerable symptom burden on the patient, ranging from physical symptoms to significant psychological, social, and spiritual concerns. Having a child diagnosed with cancer, has emotional, physical, financial, and spiritual impacts on the whole family as well.This project is based on data collected in the original study by Abu-Saad Huijer et al. (2013) focusing on the quality of palliative care, spirituality, and relationships among children with cancer, as reported by children and parents, and the financial hardship as reported by parents only.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 their treatments either at the inpatient or outpatient facilities of the Children Cancer Centre of 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 in this study to evaluate the quality of palliative care provided to the patients.Parents, adolescents, and children reported high quality of medical care. Patients reported least satisfaction with participation in decision making, while parents reported least satisfaction in securing a hospital bed. All participants reported almost high spirituality levels. Parents reported not preparing those around them for the possibility of the child’s death, and considered that children spend good time with people more than adolescents do. The study has shown that parents suffer from a moderate financial hardship during their child’s illness and difficulties in getting insurance plans to cover their child’s treatment.