Learning A New Language: Informational issues for Parents of Children Treated for Acute Lymphoblastic Leukaemia

Abstract

This article presents the initial findings on informational issues from a recent longitudinal study that examined the psycho-social issues associated with the treatment of paediatric Acute Lympoblastic Leukaemia (ALL). The treatment experience from the perspective of the child, their parents and well siblings was documented through qualitative research using open-ended interviews with the child patients, their parents and well siblings at key points in the treatment trajectory, including the first point (End of Induction Remission) which is presented here. Adequate information is vital in enabling parents to cope with the demands of treatment and to engage in the necessary planning for the maintenance of family life. However, parents differ greatly as regards the amount of information they require. The findings strongly indicate that the "language" of leukaemia treatment is complicated and challenging, even to those with a health professional background. Parents initially feel overwhelmed, especially as the learning will be taking place at a time when they are in shock and many are disorientated from the necessity of having to relocate for specialist treatment. Parents will be involved in a steep learning curve and will manage to comprehend significant concepts and information relating to diagnosis, treatment and prognosis. This understanding will develop from the written information provided by the hospital, conversations with health professionals during the daily care of their child, from other parents and, for some, the Internet. Some parents will cope by gathering a great deal of information to deepen their understanding and others will assimilate information gradually according to the immediate needs of the treatment situation. Parents in the study indicated that there were key therapeutic ingredients that assisted in the process of being informed, including: honesty; timing of information; sensitivity to the individual informational need to seek or limit material; an awareness of the possibility of information overload; and an understanding of the emotions of shock and denial.