Passageiro (Passenger): Designing for Well-being in End-of-Life Caregiving

Extended Abstract

Objective

The objective of the “Passageiro” project is to alleviate the fear of death among caregivers of terminally ill patients by providing accessible information and fostering emotional support. The project aims to promote well-being and facilitate coping strategies for individuals navigating the complexities of end-of-life care. “Passageiro” seeks to create a supportive system that empowers caregivers and enhances their ability to navigate the challenges inherent in providing end-of-life support. 

Design Process

The design process of “Passageiro” involved a comprehensive and iterative approach, beginning with extensive research to understand the needs and experiences of caregivers. Case studies were conducted, analyzing institutions and projects that foster well-being through communication, while also exploring innovative approaches to addressing societal taboos surrounding death. Blue sky research was undertaken to identify novel solutions and inspirations beyond the immediate design brief, emphasizing the importance of social innovation and solutions to current challenges. Interviews with four experts in design for health provided valuable insights into the emotional and informational needs of caregivers, highlighting the importance of accessible information and psychosocial support. Additionally, informal interactions with patients and caregivers, informed by the author’s volunteer experience in local hospitals, offered nuanced perspectives on the lived experiences of those facing end-of-life care situations. Personas and scenarios were developed to empathetically represent the diverse experiences and challenges encountered by caregivers, while polarity maps facilitated reflection on the societal issues surrounding death and dying. These tools informed the design of a product-service system, designed to provide a comprehensive suite of resources and support for caregivers. 

Results

The “Passageiro” project includes a mobile app designed to facilitate communication, access to professional resources, emotional documentation, and community support for caregivers of terminally ill patients. Through a user-friendly interface, the app enables caregivers to connect with others facing similar challenges, share experiences, and access articles and information curated by healthcare professionals. Key features of the mobile app include: (1) Community Engagement: The app provides a platform for caregivers to connect with others in similar situations, fostering a supportive community where experiences can be shared and emotional support can be accessed. (2) Professional Resources: Articles and resources authored by healthcare professionals are curated within the app, offering evidence-based information and guidance on various aspects of end-of-life care. (3) Emotional 

Documentation

Caregivers can use the app to record their emotional experiences, providing an outlet for expression and facilitating self-reflection. (4) Psychosocial Support: The app includes features for scheduling psychological support sessions, acknowledging the emotional toll of caregiving and providing avenues for professional assistance. In addition to the mobile app, “Passageiro” includes a comprehensive communication plan aimed at disseminating information and raising awareness about end-of-life care issues. An Instagram profile serves as a platform for engaging the community and sharing humanized content about death, while a dedicated website offers additional resources and information about the project. To further extend the reach of the project, an e-book and printed guide were developed to provide accessible information to underserved communities with limited internet access. These materials offer practical guidance and support for caregivers, helping to address the diverse needs of individuals facing end-of-life care situations. All designed elements of this system are connected through a brand developed for the project. ‘Passageiro’ is a word that signifies both a transitory stage and airport users. The brand incorporates elements of airport experiences as sources of inspiration, such as an old-fashioned split-flap display, calming colors, and a heart symbolizing affect. 

Discussion:

The significance of “Passageiro” lies in its comprehensive approach to addressing the emotional and informational needs of caregivers in end-of-life care situations. By combining design principles with insights from healthcare professionals and lived experiences of caregivers, the project offers a comprehensive solution that goes beyond traditional approaches to end-of-life care. By fostering community engagement and providing access to professional resources, “Passageiro” aims to empower caregivers and alleviate the fear and stigma surrounding death. Through its emphasis on emotional support and well-being, the project seeks to enhance the overall caregiving experience, promoting resilience and coping strategies among caregivers. 

Conclusion

“Passageiro” represents a meaningful contribution to the field of end-of-life caregiving, offering a human-centered approach that prioritizes emotional well-being and support. By leveraging design principles and innovative technology, the project aims to create a supportive system that empowers caregivers and enhances their ability to navigate the challenges of end-of-life care. 

Acknowledgments

We acknowledge the invaluable contributions of all individuals who supported and participated in the “Passageiro” project, including the professionals interviewed, caregivers, and patients who shared their experiences. No assistance from AI tools was used in project development. 

Award

Prêmio Bornancini is the most important award for students in the State of Rio Grande do Sul (RS), Brazil. It is issued by the Association of Professionals in Design of RS. The project “Passageiro” was awarded the gold medal in 2020 in the category of “Strategic or Service Design”.