Abstract

          Substance abuse is a relapsing chronic illness. In 2014, an estimated 27 million persons reported using illicit drugs in the United States. Substance abuse negatively impacts societies, productivity, healthcare costs and families. Families play an important role in relapse prevention and sobriety. With adequate family support, substance abuse positively responds to treatment.  Many individuals (about 66 million Americans) serve as an informal caregiver for a relative with chronic illnesses such as substance abuse but few studies exist on the caregiving experiences. What we know about the family caregiving experience is restricted to data from quantitative studies which do not explain the complexities and competing challenges that exist. Different approaches are thereby needed to deepen our understanding of the family caregiver burden of living with a relative with substance abuse problems. Such studies will enable us to understand the original experience and moment of learning of a relative’s substance abuse problems along with the decision making and support that follows thereafter.

The purpose of this study was to explore the lived experience of caregivers of relatives with alcohol and opiate dependence. This study utilized Max van Manen’s (2014) Phenomenology of Practice. Ten participants (N=10) were recruited for this in-depth study. Van Manen’s guided existential inquiry was used in the analysis of experiential material collected through interviews. Four main themes emerged from the data: (1) Being in the moment: the extension of the self; (2) The dawn of reality: the being of acceptance; (3) Deciding in the moment: the healthcare experience; (4) Uncertainties and struggle: a lifelong process. These themes described how the participants: experienced, accepted and processed a relative’s substance abuse problem, encountered treatment services and experienced the uncertainties and struggles involved in caring for a relative with substance abuse problems. Two interrelated findings emerged from these themes; the impact of guilt and stigma on seeking care and the need to see addiction as a disease rather than a moral character failure. This calls for coalitions with stakeholders to decrease stigma, enhance acceptance process and increase access to treatment.

Keywords: Uncertainties; Struggle; Stigma