US: three perspectives on the child’s experience during stem cell transplantation

A group of researchers and physicians from across the US have collaborated on a study evaluating the individual perspectives of children, parents and nurses on the experience of children receiving hematopoietic stem cell transplantation (HSCT).

Each group completed a survey about health-related quality of life, emotional functioning and general health ratings at several different points post-treatment. The findings show variability in health ratings, with children, especially younger ones, showing less mental distress and mood disturbance than their parents.

At the same time, emotional distress in the parents correlated with worse health-related quality of life reported by children. Another type of interaction in self-reported factors was that nurses’ scores of their patients’ mental distress and mood disturbance worsened across time, even surpassing the lowest parental scores, as the nurses tend to spend progressively more time with children after transplantation.

The researchers say these findings have important implications for further efforts towards patient-centred health care and multifaceted decision making processes, as doctors seek to optimise the well-being of young patients during medical procedures.

From the report: “Our findings show it is feasible to survey different groups, even children with serious illness who are undergoing intensive treatment. Different groups bring unique perspectives with different factors underlying each. Taken together, they can enrich understanding of the experience of a child and his or her parents during HSCT. Instances of disagreement might also present opportunities to further explore the child's experience. Deeper understanding of the child's experience will be instrumental in supporting children and families through this intense and trying phase of transplantation.”

Read the study