Substance use as subtext to health narratives: Identifying opportunities for improving care from community member perspectives

To analyze patient and caregiver narratives addressing experiences related to substance use and substance use disorder (SUD). Thirty audio-narratives from the MyPaTH Story Booth archive addressed substance use between 5/20/2016 and 2/24/21. Two coders established an average Cohen’s kappa statistics of 0.81 over 16 stories. The primary coder coded and summarized additional narratives and conducted content and thematic analyses. The final analytic sample addressed perspectives of individuals with SUD, caregivers for individuals with SUD and individuals who have used opioids to manage pain. Storytellers’ average age was 51, 55 % were female and 85 % were white. Participants with SUD and caregivers described frustration with the current treatment system, reported limited treatment of SUD in medical settings, and noted relying on community-based groups for ongoing care. Individuals with chronic pain felt stigmatized and resented perceived restrictions on pain treatment due to the opioid epidemic. Unstructured narratives provide insights into the lived experiences of people impacted by SUD. Participants reported struggling with the effects of SUD and failing to find adequate treatment from the medical system. Stories highlight SUD-related stigma. Understanding patient and caregiver perspectives related to SUD can be a critical step towards developing effective interventions. •Little research has focused on the lived experiences of people affected by substance abuse disorder.•Storytelling can share perspectives of adults whose lives are touched by the substance use pandemic.•The stories highlight ongoing stigma and difficulties finding adequate treatment from health care.•They reveal potential opportunities for improving treatment and a need for better pain management.