Abstract

End of life care concerns medical services dedicated to incurable patients that are living the last year, or months, of their lives. End-of-life patients have complex social, spiritual and medical needs, and they are usually cared for in family environments, such as home or residential care settings. Nowadays, there is an emerging need of technology to support the collaborative care practices that entangle families and professionals. However, conducting design processes in sensitive contexts like end-of-life environments presents several challenges due to the high social complexity of the field. In this scenario, this thesis explores the realm of end-of-life, in order to inform the design processes in sensitive contexts. This work is based on two different end-of-life contexts: pediatric palliative care and nursing homes. These studies explored two different types of end-of-life services, showing similar care dynamics but also different relational assets. The findings presented in this thesis can inform the conduction of design processes in end-of-life settings by: presenting the recurring organizational, communication and relational issues; analyzing the multifaceted role of technology in such contexts, which can be perceive both an enabler of quality care and a dangerous thing; providing also methodological insights to both embrace the stories of our informants and to also take care of the emotional wellbeing of design researchers.