Consider the family facing end-of-life care for a medically unstable older person or child. For some families, hospice and death in the home is unthinkable (or perhaps not possible if home hospice services are unavailable). For other families, hospice and death in the home is the preferred outcome. The same may apply to other medical technologies, such as home infusion technologies, or to different types of care, such as managing the demented or incontinent patient at home. In the broadest sense, what kind of home care a patient receives depends to some degree on the meaning of “home”—that is, whether families consider these sorts of adaptations appropriate, along with more obvious home and community environmental constraints.
In this sense, cultural, social, and community environments must also be considered as human or ergonomic factors relevant to the adoption and successful use of home care technologies. Consider one model of technology adoption that has been applied to the use of consumer health information technology, the patient technology acceptance model (Or et al., 2006; Or and Karsh, 2009). In this approach, key determinants of acceptance of Internet monitoring of health status among patients with cardiac disease included perceived usefulness of the technology (performance expectancy), perceived ease of use (effort expectancy), and the perceived sense that others would use such a technology in similar circumstances (subjective norm). Each of these determinants has a cultural, social, or community component. Perceived usefulness depends in part on contact with providers, which is affected by features of a patient’s community. Perceived ease of use depends on social support from families, whether families will help maintain technologies, and how receptive they are to instruction from home health care providers. Finally, subjective norms involve social influence and clearly depend on the kinds of social contact families have, where they live, and how insular they are in culture or language.
The significance of this dimension of home care should not be underrated. One middle-aged African American caregiver followed in our research had adapted her home to accommodate advanced dementia care of her mother. The hospital bed was centrally placed in the living room. She had attached a crib mobile to the bed and replaced its objects with photographs of family members and other keepsakes important to her mother. A commode was placed near the bed, and she herself slept in an adjacent room to monitor her mother at night. The bookcases and closet served as storage spaces for medical supplies and adult diapers. Guests who visited had to pass by the elder as they entered the house and were expected to engage her in conversation. The caregiver said her mother was “the best looking and best cared-for person with Alzheimer’s disease in Philadelphia.” Not every family is willing or able to make these accommodations, as in the case of another caregiver in this case series, who removed a similarly impaired