Palliative family caregivers' accounts of health care experiences: The importance of “security”

Abstract

AbstractObjective:When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers.Methods:A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of “security” was used as an analytic lens to facilitate conceptual development and exploration.Results:Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system.Significance of results:The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.