Stepping up, stepping back, being pushed, and stepping away: the process of making treatment decisions for children with cancer by parents who no longer live together

Abstract

The purpose of this study was to describe the process of treatment decision making for parents of children with cancer who no longer lived together. Fifteen biological parents and stepparents of eight children with cancer who had made a major treatment decision in the past were interviewed. Using grounded theory techniques, the process of stepping up, stepping back, being pushed, and stepping away in making treatment decisions was described by parents. The process depicted differing levels of parent involvement based on the parent's position in the family, involvement with the child before diagnosis, and stage of treatment. Psychosocial consequences for biological parent were linked to their decision making responsibility for the ill child. Stepparent effects were linked to interpersonal conflicts amongst the parents. Parents described a largely adaptive process of making treatment decisions for their children with cancer; including the additional burdens and challenges they faced because of their specific family circumstances. The findings from this study have implications for helping to better prepare nurses and other health care providers to care for similar families.