Information-sharing challenges between adolescents with cancer, their parents and health care providers: a qualitative study.

PURPOSE

We aimed to assess the viewpoints, experiences, and preferences within the clinical communication triangle (parent, adolescent, health care team) concerning the information-sharing process for adolescents with cancer.

METHODS

This is a qualitative descriptive-exploratory study. Overall, 33 participants were recruited (adolescents diagnosed with cancer aged 15-20 years, their parents, oncologists, and nurses). In-depth semi-structured interviews were conducted and data were analyzed using constant comparative analysis.

RESULTS

Data analysis yielded three main themes. Disaffiliation of adolescents in information-sharing process with three subthemes: confusion and unanswered questions; and, seeking information from inferior sources. Barriers to information-sharing with three subthemes: parents as gatekeepers in the information-sharing process, cultural background creating strong barriers for information-sharing, and the negative attitude of the medical team towards information-sharing. The last theme is cornerstones in information-sharing process with three subthemes: trust and honesty to enhance communication between adolescents and the medical team, the necessity of paving the way for information-sharing, and the value of gradual information-sharing based on the adolescents need and mental readiness.

CONCLUSION

Participants believed that information-sharing was insufficient and provided recommendations for facilitating this process. Information-sharing process needs to be gradual and based on the adolescent's need and mental capacity. Future research needs to focus on devising a protocol for information-sharing with adolescents with cancer that accounts for familial and cultural factors, is carefully timed, and provides clearer and more efficacious communication between parents, adolescents, and the health care team.