Oncology, McGill University, 546 Pine Avenue West, Montreal, QC, Canada H2W 1S6.
Soc Sci Med. 2011 Jul;73(1):129-34. doi: 10.1016/j.socscimed.2011.05.018. Epub 2011 May 27.
With only 50% of patients in developed countries following the therapies prescribed for them by health professionals, "non-compliance" is commonly described as causing increases in morbidity, hospital visits, and overall healthcare costs. A plethora of non-compliance studies have failed to identify consistent predictors for, or solutions to, patients' non-compliance. Our longitudinal (September 2006-September 2008) participatory action research (PAR) focused on (a) understanding hemodialysis patients' perspectives on the challenges and solutions to living well with their chronic illness and (b) taking action to improve this population's quality of life. The study's participants included seven purposefully sampled patients in two hospital hemodialysis units in Canada. A small sample size was essential to accommodate our commitment to conducting a PAR study with this patient population whose unpredictable health status presented significant challenges to recruitment, follow-up interviews, and participation in data analysis. Data collection and analysis over 2 years included over 100 h of ethnographic field observation, bi-weekly unrecorded and 12 audio-recorded in-dialysis interviews, five video-recorded life-history interviews, two video-recorded focus groups, and five video-recorded dialysis treatment sessions. Thematic content analysis drew attention to patients' descriptions of adversarial interactions with health professionals. In these interactions, three points of tension were identified: (a) between whole person care and "assembly line" treatment, (b) between patient knowledge and medical expertise, and (c) between shared decision-making and "digging to find out". The article concludes that these adversarial relationships are indicative of a lack of trust stemming from health professionals' failure to interact with patients as whole persons with unique expertise on their bodies, their experience of illness, and their lives.
只有发达国家 50%的患者遵循健康专业人员为他们开出的治疗方案，因此“不遵医嘱”通常被描述为导致发病率、住院次数和整体医疗保健费用增加的原因。大量不遵医嘱的研究未能确定患者不遵医嘱的一致预测因素或解决办法。我们的纵向（2006 年 9 月至 2008 年 9 月）参与式行动研究（PAR）专注于：（a）了解血液透析患者对其慢性病生活的挑战和解决方案的看法；（b）采取行动改善这一人群的生活质量。该研究的参与者包括加拿大两家医院血液透析中心的七名有针对性抽样的患者。由于患者健康状况不可预测，给招募、后续访谈和参与数据分析带来了巨大挑战，因此我们必须采用小样本量来进行 PAR 研究。在 2 年多的时间里，我们通过 100 多个小时的民族志实地观察、两周一次的非记录和 12 次音频记录的透析中访谈、5 次视频记录的生活史访谈、2 次视频记录的焦点小组访谈和 5 次视频记录的透析治疗会议收集和分析数据。主题内容分析引起了人们对患者与健康专业人员之间对抗性互动的描述的关注。在这些互动中，确定了三个紧张点：（a）整体护理与“流水线”治疗之间；（b）患者知识与医学专业知识之间；（c）共同决策与“深挖以查明”之间。本文的结论是，这些对抗性关系表明，健康专业人员未能将患者作为具有独特身体专业知识、疾病体验和生活经历的完整个体与之互动，从而导致缺乏信任。
