Adult survivors of childhood cancer and their parents: experiences with survivorship and long-term follow-up

To compare the perspectives of adult childhood cancer survivors and their parents in terms of: (1) parental involvement in the survivor's healthcare, (2) thoughts and discussion about their own or their son's/daughter's childhood cancer, (3) concern about the survivor's current health status, and (4) perceived benefits of follow-up care. Forty-two adult survivors and their parents completed a semistructured audio-taped interview via the phone responding to a parallel set of questions. Thirty-eight percent of survivors reported that one of their parents attended the adult survivor clinic with them; in 41% of patient-parent dyads the parent expressed more concern than their child about the child's health status; 45% of the parents reported thinking about the cancer experience more often than their child. The results suggest that some parents continue to worry about their child's health status into adulthood, and in turn may choose to stay involved in their adult child's healthcare. Additional research is needed to understand the survivorship needs of the adult survivor and their family. Including parents in important healthcare decisions and discussions may be a consideration when caring for this unique population of patients.