Posttraumatic stress among parents of children on cancer treatment: support, care and distress

Abstract: The main aim of this thesis was to longitudinally investigate the potential occurrence of posttraumatic stress disorder (PTSD) among parents of children on cancer treatment (Study I). Additional aims were to describe parents’ perceptions of emotional support and satisfaction with the child’s care (II), perceptions of the child’s symptom burden (III), and parents’ stories about having a child on cancer treatment (IV). The design was prospective, longitudinal, and data was collected at: one week, two months, and four months after the child’s diagnosis and one week/six months after the end of successful treatment/transplantation. Parents (N=259) were consecutively included during the years 2002-2004 and answered questionnaires and open-ended questions over the telephone. Parenting a child with cancer is a very demanding, potentially traumatic, event. Approximately a fourth of the parents report symptoms corresponding to PTSD. The symptom level is related to being a mother, not working before the child’s diagnosis, and to previous trauma experience. Less than half of those who report a need to talk with a psychologist report having had the opportunity to do so. Parents are generally satisfied with the care and report the highest satisfaction with the technical care. Emotional distress, fatigue, nutrition, and pain are, according to parents, the most problematic symptom areas for their children. Pain is identified as especially problematic. Parents in paediatric oncology care should be acknowledged as potential care-recipients. In order to prevent development of PTSD parents of children on cancer treatment should be supported to maintain an ordinary life, for example pursue work and/or activities, and to get sufficient rest. As a means towards this parents need help with e.g. household duties and childcare. In addition to this, parents in approximately two fifths of the families need extended psychosocial support aiming at reducing posttraumatic stress.