Family Resiliance Technologies: Designing Collaborative Technologies for Caregiving Coordination in the Children's Hospital

Abstract

Each year, the parents of approximately 15,300 kids will hear the words “Your child has cancer.” Families with hospitalized children must process a lot of stress and play a vital role in their child’s care. Hospitalized children need care and assistance processing medical information and going through their treatment. Therefore, their families must take on new responsibilities such as providing care, processing medical information, getting ready for the extensive and sometimes painful treatments, and facing the fear of losing their child. They must also adjust their daily duties, chores, and jobs to provide care to their hospitalized child. Previous research on families with hospitalized children shows that a lower level of stress and a higher level of communication among family members are significant predictors of long-term health outcomes after hospitalization. Social work and family therapy studies researched family resilience as these families’ ability to process and handle stress as a system. However, few technologies are designed to increase family resilience and support the family’s communication and collaboration when a child is hospitalized. My aim in this dissertation is to understand how collaborative technologies can help family members of hospitalized children (family caregivers) collaborate and coordinate with each other during the stressful extended hospitalization period. Through qualitative interviews and elicitation activities followed by iterative cycles of design, I showed that Family Resilience can be used as a lens to understand families’ collaborative processes and guide the design of collaborative technologies to support these families in adapting when they are under stress, and their usual routines as a family are constantly changing due to their child’s hospitalization. Therefore, there is an opportunity for HCI and CSCW to design collaborative technology that supports family resilience processes for families facing a crisis, such as having a hospitalized child with cancer.