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

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