Background Few studies have been conducted on the experiences of children of terminally ill patients or hospital-based medical professionals supporting such children.

Aim This study explored distress among individuals whose parents died of cancer in childhood and among hospital-based medical professionals supporting such children.

Design A qualitative study.

Setting/participants The sample was 12 adults whose parents had died of cancer in childhood and 20 hospital-based medical professionals supporting children of patients’ with terminal cancer. In-depth interviews were conducted, focusing on the distress experienced by the participants. The data were analysed thematically.

Results Among adults whose parents died of cancer in childhood, we identified themes related to the period before death (eg, concealing the parent's illness), the time of death (eg, alienation due to isolation from the parent), soon after death (eg, fear and shock evoked by the bizarre circumstances, regrets regarding the relationship with the deceased parent before death), several years thereafter (ie, distinctive reflection during adolescence, prompted by the parent's absence) and the present time (ie, unresolved feelings regarding losing the parent). We identified seven themes among the medical professionals (eg, lack of knowledge/experience with children, the family's attempts to shield the child from the reality of death, estrangement from the family once they leave the hospital).

Conclusions An important finding of the study is that the participants’ grief reaction to their parents’ deaths during childhood was prolonged. Moreover, hospital medical professionals may find it difficult to directly support affected children. Comprehensive support involving organisations (eg, local communities) may be necessary for children who have lost a parent.