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

Abstract

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.

Keywords: Adolescent; Cancer; Health care providers; Information-sharing; Parents.