Information about the illness and its implications is a key factor for parents of children with cancer. Nevertheless, many parents experience low satisfaction with the information provided. As a starting point for this research project, we interviewed health care professionals and parents about their experiences of information. Health care professionals described difficulties in matching the amount of information to the parents’ needs and shortcomings in responsibilities, setting, timing, and language when parents were informed. The parents felt acknowledged as persons of significance when the information worked well. However, some parents felt abandoned at important milestones and were forced to nag for information. We also studied the interaction between parents and health care professionals and identified different patterns depending on how active parents were the interaction combined with the health care professionals primary focus of the interaction. Grounded on these findings and previous research, we designed a person-centred information intervention aiming at parents of children with cancer. So far, it has been pilot tested on eight parents. They were highly satisfied with the person-centred information intervention and perceived benefits from having their own time to discuss the child’s disease and pose questions that they otherwise would not have an opportunity to ask. However, no effects from the intervention were demonstrated on perceived stress, physical symptoms of stress, anxiety, and depressive mood. To sum up, central tasks are to assess the amount of and what information the parents need, to pay attention to possible differences in information needs between parents and children, and, to organise the care so that the responsibilities are clear and that parents are met in a calm setting. Improvements at important milestones during the illness period should be prioritised.
Keynote