The experience of families when a child is diagnosed with cancer with a favorable diagnosis

Abstract

<p>The major objective of this longitudinal, descriptive study was to describe the family transition to living with childhood cancer, from the family's point of view, when a child is diagnosed with cancer with a favorable prognosis. The major research question was: What is the experience of families when a child is diagnosed with cancer with a favorable prognosis? A convenience sample consisted of 40 members of 7 families with a child recently diagnosed with cancer with a favorable prognosis at a northwestern health sciences university hospital. Cancer with a favorable prognosis was defined to be any subtype of cancer with greater than 60% long-term survival rate. At least one child in the family was 5 years old or older. All family members over 5 years of age participated. The study used a grounded theory approach. Data collection consisted of three tape-recorded, semi-structured interviews with family members in the home. During the first two interviews, all family members over the age of five were interviewed individually. During the first interview, parent(s) completed a demographic questionnaire. The third interview was with the entire family together. Interviews occurred at the time of diagnosis, at the time the child went into remission, and three months post remission. A modified grounded theory analysis was used. The major finding was a model of the family transition in response to the diagnosis of childhood cancer. This transition was characterized by a fracturing of reality at the realization of the malignant nature of the illness, a period of limbo following the diagnosis, the utilization of strategies to reconstruct reality, and a "new normal" for the family. The transition process continued for the 4-5 month course of the study and, in all families, extended beyond the study period. Factors limiting generalizability of the findings include the small sample size, single site, and the shortness of time families were followed. Implications for nursing practice include the family's need for continued nursing involvement throughout the illness trajectory, past medically defined remission and a need for nursing care to be family focused. Research implications include further exploration of the transition over a longer period of time, with a variety of illness trajectories and a larger sample.</p>