Needs of children during palliative care in pediatric oncology - A parents' survey in Morocco

The care of children at the end of life may be particularly complex. High-quality palliative care is now an expected standard at the end of life. To better understand the needs of the Moroccan children and their families, parents of terminally ill children were asked to answer a questionnaire. The study was conducted in the Pediatric Hematology and Oncology Institute of Rabat, Morocco, during 2013. We interviewed the parents of children who were in palliative care about physical symptoms, psychosocial needs, and whether or not they talked about death with their child. The questionnaire was administered in Arabic by a psychologist. Medical records were reviewed for additional information. Among the 20 parents who participated in the study, 19 refused the announcement of the palliative phase to their child. The most frequent parent reaction was death anticipation and resignation. Most of the parents avoid discussing with their child about his/her imminent death or indirectly discussing the death of "the others". Concerning the place chosen for the end of life, 55% of the sample preferred the patient's house and 45%, the hospital. The main symptoms reported were pain (75%) and fatigue (75%). Finally, of the 20 relatives interviewed, 19 of them expressed physical needs such as a better symptoms management and more contact with the caregivers, 15 expressed a need of social support (transport fees, support for medication fees, etc.), and all the parents reported the need of psychological support. In pediatric oncology, palliative care is the most difficult phase for the parents, the children, and also for the caregivers especially in low-income countries where palliative care are poorly structured. One of the most important steps to improve its management is to understand the needs of each person involved.