In order to better understand the impact and outcomes of substance use disorder, specific data points including naloxone resuscitation, emergency room visits, and hospital admissions are being collected statewide (Commonwealth of Pennsylvania, n.d.). While statistics lend to examining geographic trends, data on issues surrounding the addicted individual, such as from management after Naloxone resuscitation, transition from law enforcement agencies to treatment, treatment options and strategies to maintain recovery are being explored. In response to this crisis Health and Human Services announced a 5-Point Strategy that is focused on improving addiction prevention, treatment and recovery services; gathering better data; conducting more focused opioid addiction research; managing pain more effectively; and targeting of overdose reversing drugs to improve outcomes (2018).
The opioid epidemic is complex problem. In order to provide a comprehensive intervention plan, we first need to understand the perspectives of all stakeholders. There are many stakeholders in this epidemic ranging from the individual, family, friends, the community, the state and the nation. There is limited research that explains the lived experience of individuals involved in this epidemic including the addicted individual and their families and friends. One can think of opioid addiction as a continuum with initiation to opioid use on one end of the trajectory and recovery or death at the opposite end. Recognizing that each person’s substance use disorder trajectory is unique and that the individual may attempt treatment multiple times is well documented in the treatment-seeking research.
Using an interpretative phenomenological method of inquiry (van Manen, 1990), the purpose of the study is to understand the lived experience of a family member dealing with an individual with substance use disorder. University IRB approval was obtained. Using convenience sampling, participants that identified as a primary family to a person with substance use disorder were recruited. Prior to participating in the study, informed consent was obtained from each participant and all interviews were audio recorded. A semi-structure interview guide was used and interviews were conducted in a quiet, private location chosen by the participant. Interviews ranged from 60-90 minutes. Interviews were transcribed and identifiers (i.e., names, locations, facilities/treatment centers, etc.) were removed by the principal investigator. Transcripts were uploaded to NVIVO, which is a qualitative data analysis tool.
Demographic data was collected on each of the participants. Eight participants (n=8) included mothers, a father, a wife, a grandmother and an aunt. During the time of the interview, the persons with the substance abuse were in the following stages of the substance use disorder trajectory and included recovery (n=4), active addiction (n=1), and died from an overdose (n=3). Content analysis was completed on de-indentified transcriptions by two researchers independently. Analysis revealed 4 themes of the lived experience of a family member dealing with an individual with substance use disorder (a) confirming the addiction, (b) living with addiction, (c) sorting out addiction and (d) reflecting on addiction.
Findings were supported by previous literature. The stigma associated with addiction and the shame of people finding out about the addiction were evidenced as participants discussed their experience in confirming and disclosing their loved one’s substance use disorder (Goodyear, Haas-Koffler & Chavanne, 2018; Matthews, Dwyer & Snoek, 2017; Kulesza, Matsuda, Ramirez, Werntz, Teachman & Lindgren, 2016). As family members live with and sort out the addiction process, the family members discussed the complexity of navigating the system and coping with the daily struggles of dealing with a person with substance use disorder. One previous study supports the idea of an ultimatum or “tipping point”, which was described by the participants (Rubio, 2016).
This study allows us to better understand the lived experience of a family member of person with opioid substance use disorder including the experiences surrounding confirming and living with the substance. The participants revealed their shared journey as they faced the challenges and recognizing that entry into treatment is usually decided by the addicted individual. Future studies examining the complexities of insurance issues and privacy/confidentiality (Health Insurance Portability and Accountability Act, HIPAA) may help address barrier in the treatment process and assist family members as they support the person substance use disorder. Currently, there are crucial opportunities missed in the initiation and continuation of a comprehensive treatment plan. Even when the person with substance use disorder expresses the desire to seek treatment, the person and their family member meet many roadblocks. Capitalizing on these opportunities is critical when an addicted person chooses to seek treatment. A delay of hours or days can result in irreversible outcomes. Timely admission into treatment is a key component in fighting the opioid epidemic. Improved understanding of this journey, as revealed in this study, provides insight into how best support the needs of family and the addicted individual. Enhancing education and support for the family and friends has the potential to impact the addicted individual. Recognizing the unique needs of this group reveals opportunities for healthcare provider and community-based interventions to maximize resources and support this growing population.
**Authors note; the term “substance use disorder” was adopted while the study was in progress.