The Fuelbox "Young Next of Kin"-A Mixed-Methods Study on the Development and Piloting of a Communication Tool for Adolescents Coping With Parental Cancer or Death

Abstract

Background: Adolescents' ability to cope with parental cancer and death is largely dependent on information and open communication, but parents and professionals often feel uncertain in such circumstances.

Objectives: To develop and pilot a communication tool to enhance communication with adolescents living with or having lost a parent with cancer.

Methods: A Fuelbox was developed in a 4-phased process including adolescents and professionals and piloted by 51 participants (adolescents, parents, and professionals) over 4 months. Using a mixed-methods study with a convergent design, data were collected via a questionnaire and interviews and were then merged.

Results: The final "Young Next of Kin" Fuelbox consisted of 8 topics and 176 questions. Participants used the Fuelbox in different contexts, utilizing a variety of approaches. The participants found that it covered significant topics and questions important to adolescents' situation. The Fuelbox was considered a very useful and beneficial tool to promote communication with adolescents, given that users maintain awareness of voluntary participation, confidentiality, preparedness, time, and safe frames.

Conclusion: The Fuelbox "Young Next of Kin" seems to be a flexible and accessible communication tool in private and professional settings to enhance communication with adolescents living with or having lost a parent with cancer. As the Fuelbox is diagnosis-neutral in nature, it may be transferable to other populations and settings.

Implications for clinical practice: The Fuelbox is a flexible, accessible, and useful tool for communication between adolescents and parents, and adolescents and healthcare professionals in specialist and primary healthcare settings.