Caregiver/Family Agency: Rebuilding Confidence, Play, Familiarity, and Passion in a Healthcare System

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During recovery and transition to the ‘new normal’, the loss of agency for patients and families of patients who go through a major health disruptor such as transplant, cancer, or cardio-vascular disease can be profound. Considering this, how can acute care hospitals help solve for caregivers’ loss of agency? And what does the physicality of such effort in the confines of a hospital building look like? The goal of this case study is to (1) demonstrate how ethnographic thinking and design research can help a medical center understand the needs, values, rituals, and agency of a patients and their families; (2) show socio-spatial solutions that can support the transition to the patient’s and family’s new normal.

The ethnographic study showed that the patients and families who go through a major health disruptor struggle with the loss of agency in various ways. While loss of agency can be obtuse, four themes emerged as contributing factors to the overall sense of loss: (1) loss of confidence; (2) loss of familiarity; (3) loss of play; (4) loss of passion. The degree of loss experienced was related to the severity of the health disruptor.

Socio-spatial design solutions resulting from the research included a significant allocation of family-centric space (e.g., experiential learning for family caregiver education, well-being for family support, and family connection rooms), programs, services, products, and partnerships (to relieve and provide permission) for family caregivers to regain elements of agency.

This case study is written before the redesigned protocol and physical space design is completed-and-in-practice. The research to-date, however, was sufficient to persuade the client to commit to redesigning the family/caregiver experience as manifested in the design of the physical space as well as its accompanying protocols.

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