This thesis explores how the well-being of palliative head and neck cancer (HNC) patients can be supported within the remote care system at Erasmus MC. The first phase involved in-depth desk and field research through literature reviews, patient interviews, and interviews with experts to identify which fundamental needs, based on the 13 Fundamental Psychological Needs (13 FPN) typology, are currently unfulfilled and considered critical to see fulfilled for this population in this phase of their life. The research identified that Autonomy, Relatedness, and Comfort are the most critical needs to address. Based on these insights and a patient journey map, design opportunities within the Erasmus MC Remote Care system were identified.
Through interviews with VPKC’s and showing them an explorative design that was focused on a potential ‘practical gap’ patients can experience, it became clear there was a much more valuable design opportunity for a specific group of palliative HNC patients: patients who face communication barriers because of severe speech difficulties. A design vision, design goal and interaction vision were developed, along with scenarios illustrating how these speech difficulties negatively impact patient wellbeing.
An explorative concept was discussed with Erasmus MC. The focus group appeared to be very niche and the objective of Erasmus MC was to target more of their patients. Therefore, the target group was expanded to include a wider range of physical barriers characteristic of (palliative) HNC, and the design goal was refined accordingly. The focus shifted from 'restoring a voice' toward managing the social dynamics of conversation, ensuring that patients can remain active participants and maintain agency during interactions.
It became evident that Erasmus MC was primarily interested in the psychosocial dimensions of communication barriers, specifically the challenge of initiating discussions about end-of-life topics with loved ones. Following feedback sessions on three concepts, a concept was chosen that addresses both physical and psychosocial barriers within communication. Strong elements of the other concepts were combined into the final concept. The core elements and a potential user scenario of this refined concept were presented to four different experts for feedback. These results created the base for a new design iteration.
The resulting design, ‘Wat ik zeggen wil’, was developed. This design aims to facilitate meaningful communication regarding end-of-life topics between palliative HNC patients and their loved ones by mitigating both physical and psychosocial barriers. It consists of theme cards that serve as conversation starters and various 'agency' components designed to help patients remain active participants in a conversation by maintaining agency in an energy-efficient manner.
The design was evaluated through proxy user tests and feedback sessions with experts from Erasmus MC to start a new design iteration to formulate proposed refinements and recommendations for further development. While the product must still be tested with the actual user group, this thesis provides a foundation for supporting palliative HNC patient wellbeing by supporting better communication.