The experience of hope for informal caregivers of palliative home care patients : a grounded theory exploration

Abstract

The purpose of this study was to explore the processes of hope in informal caregivers of palliative patients. Interviews were conducted with caregivers who were living with and currently providing care to a palliative patient at home. Saturation was reached with 10 caregivers, five females and five males, from 2 cities in Saskatchewan, Canada. The design of this qualitative study was Glaser’s (2001) grounded theory. Broad, unstructured face to face audio taped interviews were conducted in the participants’ homes. Interviews were transcribed verbatim and analyzed using constant-comparative method of analysis in order to identify the main concern of the participants related to hope, and the basic social processes used to resolve that concern. “Eroding hope” was the main concern relating to hope during caregiving for a palliative patient. Eroding hope was a result of bad days, negative messages, and experiences with the health care system. The participants deal with eroding hope by using the basic social process of “hanging on to hope.” Hanging on to hope has 4 sub-processes: a)doing what you have to do, b)living in the moment, c)staying positive, and d)writing your own story. The support of friends, family, and health care professionals and connecting with something bigger and stronger were sub-processes of hanging on to hope that together directly affect the other sub-processes.The findings of this study have direct application for the care and support of informal caregivers providing palliative care at home, as a basis for assessment and interventions that will assist caregivers to hang on to hope. Nurses and other health care professionals need to recognize and value the experience of hope for caregivers by addressing, teaching, and reinforcing the sub-processes and ways of hanging on to hope into their practice.