Addiction is often referred to as a family disease — it affects both the person with substance use disorder (SUD) as well as the caregivers who try to help and support that person. As the United States and Canada are in the midst of an opioid crisis, researchers examined the impact of caring for individuals with SUD on family members’ physical and mental health.
Although previous studies have examined the impact of substance use on families, treatment programs “are often devoted to treating addiction and often do not include the entire family members in the recovery process,” noted lead study author Geoffrey Maina, RN, BScN, MN, PhD, associate professor at the College of Nursing, University of Saskatchewan, Prince Albert Campus, in Prince Albert, Canada.
To be included in the study, participants were required to have a relative with a SUD and not be actively using the substance themselves. Caregivers were interviewed to explore their experiences of caring for a relative with SUD and as well as “how they made sense” of caring for a relative with SUD.
Twenty one participants were involved in the study (17 women; ages 27-72 years), Of the 21 participants, 13 grew up in homes where they witnessed SUD at an early age. The participants’ loved ones included 1 sister, 4 brothers, 8 parents, 6 dependents, and 1 grandparent with SUD.
The authors identified 4 themes that ran through interviews:
- Grieving the loss of their loved one
- Living in dread and despair
- Living in perpetual crisis
- Mitigating the impact of substance use in the family
A significant effect of addiction on caregivers was the loss of relationships with individuals with SUD and its effects on family stability and community life. “The participants’ inability to have a meaningful relationship with their relatives … was grieved as a type of social death; some relatives behaved as though the person with SUD did not exist because of the person’s inability to positively impact the family’s social dimensions,” noted the authors.
Most caregivers expressed their inability to control the person’s addition, which was expressed as feelings of helplessness and hopelessness. This appears “to be further exacerbated by their lack of knowledge of addiction,” the authors said. Although many caregivers hoped that recovery was possible, “the painful cycle of relapse or reluctance of the individual with SUD to enter treatment eventually stripped away any thread of hope,” they said.
The researchers also noted that addiction can increase the relatives’ vulnerability to maltreatment and instability, “leading to violence, divorce, and the inability to provide for the dependents’ needs.” This led to feelings of confusion, anger, frustration, anxiety, depression, abandonment, anxiety, fear, embarrassment, and guilt. “Stigma also creates barriers for individuals with SUD, their families, and health care providers and can diminish the ability to seek and provide resources and support,” they said.
To find support and resources for self-care, many family members turned to Al-Anon, a 12-step program developed by the wife of one of the cofounders of Alcoholics Anonymous (AA). Through group meetings (virtual and in-person), Al-Anon helps families become less vulnerable to addiction’s effects and gives them an environment where they can relate and learn from others who shared the same experience.
One weakness of the study was that the authors relied on the recollection of participants’ experiences, which may be limited by the passage of time.
Lack of knowledge about addiction, its impact on families, and unrealistic expectations for their relative’s recovery were among the factors that contributed to caregivers’ psychological stress, noted the authors. “Addiction treatment modalities need to be re-evaluated to ensure that families are fully integrated into their care model,” concluded the authors.
Further research is required to develop evidence-based interventions focusing on family self-care modalities.
Maina G, Ogenchuk M, Phaneuf T, Kwame A. “I can’t live like that”: the experience of caregiver stress of caring for a relative with substance use disorder. Subst Abuse Treat Prev Policy. 2021;16(1):11. doi:10.1186/s13011-021-00344-3