By considering the prevalence of incurable illness, the importance of end-of-life communication, and the identified research gap concerning emerging adults coping with an incurably ill parent, the following research question was formulated:
How do emerging adults (ages 1
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By considering the prevalence of incurable illness, the importance of end-of-life communication, and the identified research gap concerning emerging adults coping with an incurably ill parent, the following research question was formulated:
How do emerging adults (ages 18–30) and their incurably ill parents navigate the communication process regarding illness and end-of-life needs and wishes, and what factors influence this process?
In this thesis, a wide range of factors shaping end-of-life communication between emerging adults and their incurably ill parent was identified. Because these factors can vary from person to person, it became clear that any design solution must allow room for personal interpretation.
Several themes within end-of-life communication were also identified. Importantly, the research revealed that, in addition to communicating about wishes, feelings, perspectives, and practical matters, it is vital to communicate about love and connection. Ultimately, love is what it comes down to.
Furthermore multiple barriers to end-of-life communication were found, which lead to coping strategies: avoidance, denial, putting up a façade, and conflict. Motivated by love, emerging adults and their parents aim to protect each other from negative emotions. While well-intentioned, these coping strategies do not always foster connection or effective communication.
The research highlights strategies and means to facilitate end-of-life communication, such as providing guidance, creating awareness, and creating intentional moments for discussion.
The end-of-life process is characterized by three phases: the adaptation phase, the ''new normal'' phase, and the terminal phase. Among these, the new normal phase presents the most promising opportunities for design.
Based on these insights, the following design goal was formulated:
“To foster connection and create mutual understanding between emerging adults and their terminally ill parent during the new ''normal'' phase of the end-of-life process at home, by creating space for lightheartedness and open communication about needs and wishes.”
To achieve this goal, six design criteria were set: explorative, comfortable, lighthearted, connecting, guiding, and evoking curiosity.
The final concept, called Leafe, is an activity designed to facilitate connection between an emerging adult and their terminally ill parent. Together, they create a mosaic artwork while engaging in conversations about end-of-life themes. The box ultimately serves as a keepsake, a place to store photos and mementos, and a tangible reminder of shared memories.
Evaluation of the concept showed that it performs well across the established design criteria. However, further research in real-life contexts is recommended. Additional recommendations include expanding the target group, incorporating a feature to make starting the process less overwhelming, adding options for personalization, developing an effective marketing plan, and improving the production process to make the concept more accessible and cost-effective.