Department of Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
Department of Family Medicine and Community Health, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
Patient Educ Couns. 2024 Nov;128:108384. doi: 10.1016/j.pec.2024.108384. Epub 2024 Aug 9.
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.
分析患者和护理人员的叙述，以了解与物质使用和物质使用障碍（SUD）相关的经历。
从 MyPaTH 故事亭档案中选取了 30 个关于物质使用的音频叙述，时间范围为 2016 年 5 月 20 日至 21 年 2 月 24 日。两位编码员在 16 个故事上建立了平均 Cohen's kappa 统计值为 0.81。主要编码员对其他叙述进行了编码和总结，并进行了内容和主题分析。最终的分析样本涉及 SUD 患者、SUD 患者的护理人员以及使用阿片类药物来管理疼痛的个体的观点。
叙述者的平均年龄为 51 岁，55%为女性，85%为白人。有 SUD 的参与者和护理人员描述了对当前治疗系统的不满，报告了医疗环境中对 SUD 的治疗有限，并指出依赖社区团体进行持续护理。慢性疼痛患者感到受到歧视，并对由于阿片类药物流行而对疼痛治疗的限制感到不满。
非结构化叙述提供了对受 SUD 影响的人的生活经历的深入了解。参与者报告了与 SUD 的影响作斗争以及未能从医疗系统中获得足够的治疗。这些故事强调了与 SUD 相关的耻辱感。
了解患者和护理人员与 SUD 相关的观点可以是开发有效干预措施的关键步骤。
