Beginning treatment for childhood acute lymphoblastic leukemia: insights from the parents' perspective.

Abstract

To report the perspective of parents during the initial stages of diagnosis and treatment for their children's acute lymphoblastic leukemia (ALL). Descriptive and phenomenologic. Royal Children's Hospital, Brisbane, Australia. Parents (mothers, n = 12; fathers, n = 4) of 12 children (ages 0-10) undergoing treatment for ALL. Open-ended, audiotaped interviews were transcribed verbatim and analyzed. Parents' experiences of their children's initial diagnosis and treatment of ALL. The parents' insights provided a clear indication that the initial stage of treatment is highly stressful and parents may be overwhelmed by the experience. The situational stress translated into three potentially overwhelming emotional states: the stress of uncertainty, the shock of diagnosis, and a feeling of being trapped in an unpleasant emotional roller-coaster ride. Honesty from healthcare professionals, the opportunity to share feelings, and an affirmation of the harshness of the situation were reported as helpful in dealing with the sense of being overwhelmed. Parents need honest information and sensitive emotional support to come to terms with the stresses associated with their children's diagnosis and initial treatment of ALL. Parents must have access to a safe environment where they can express their feelings and have the harsh reality of the initial stage of treatment affirmed. Parents need considerable emotional support to negotiate the initial stage of treatment for ALL. Parents of children diagnosed with ALL must have honest information about diagnosis and treatment, as much information as possible for planning their daily lives, an opportunity to express real feelings, access to moments of personal space where feelings can be processed, and compassionate understanding of the emotional difficulties associated with this difficult life journey.