Experiences of parents of childhood cancer survivors: a qualitative analysis

Abstract

As the prognosis of childhood cancer improves, so does concern for the quality of survival. Because childhood cancer affects the entire family, insight is needed into the late consequences for parents and how they cope with it. For this purpose, a qualitative research method was used because this method enables a description of what it is like to live through childhood cancer in all its aspects. Parents whose child survived cancer were interviewed in depth about the late consequences of the disease. To maximize contrast in parental experience and in coping with the disease, variational sampling was used. Results indicated that parents experienced changes of a definitive and long-lasting nature as a result of cancer in their child. In spite of the child's survival, feelings of loss and perseveration of problems prevailed. To cope with late sequelae, characteristic strategies were identified including the position parents adopt a life or death perspective on the final outcome of the disease, the extent to which they express emotions, and the use of family planning and parenting behavior. Coping strategies used had not only an effect on the individual parent but also on the other family members. Parents who used coping strategies in a non-extreme way appeared to be functioning well. Implications for patient care and research are discussed.