Understanding How Software Can Support the Needs of Family Caregivers for Patients with Severe Conditions

Abstract

In this paper, we report an extensive analysis that we performed in two scenarios where the care relation between doctor and patients are mediated by the relatives of the patients: Pediatric Palliative Care (PPC) and Nursing Homes (NH). When the patients are children or very old adults in the end of life, the provision of care often involve a family caregiver as the main point of contact for the health service. PPC and NH are characterized by emotional complexity, since incurable diseases expose the family caregivers to heavy careload and human distress. In this paper, we discuss our findings with a novel perspective, focusing on: information, coordination and social challenges that arise by dealing with such contexts, the existing technology as it is appropriated today to cope with them, and what we, as software researchers, can do to develop the right solutions.