Palliative Care

Abstract

Whether they are thrust into the caregiving role or volunteer for it, most caregivers want to know what to do, how to do it, and how to prepare for what is ahead. For some caregivers, information is empowering, and for other caregivers, it is overwhelming. Regardless, examine any study on family caregiving or talk to any family caregiver, and the conclusion will be the same: Family caregivers need information, education, and support. Few caregivers are able to fully understand and use available health information when advocating and caring for chronically ill patients, and this seriously complicates their ability to contribute to patient self-management and support at home. To help caregivers understand their role and get them the help they need, they have to be included in the healthcare system and in the patient care process. In recognizing that caregivers are current and future patients who need care too, this chapter (a) introduces palliative care to illustrate how the patient and family’s illness journey is powerfully influenced by their understanding of the disease and its treatment and (b) outlines the health literate care model to identify important reasons to integrate caregivers. Both foci of this chapter are radically impacted by the pre-existing structure and function of the family. Narrative features of caregiving are used to describe three illness journeys that caregivers traverse.