Faculty of Theology and Religious Studies, KU Leuven, Louvain, Belgium.
PZ Onzelievevrouw, Brugge, Belgium.
Int J Qual Stud Health Well-being. 2024 Dec;19(1):2408817. doi: 10.1080/17482631.2024.2408817. Epub 2024 Sep 27.
People experiencing severe and persistent mental illness (SPMI) constitute a vulnerable population within the healthcare system and society. Similarly in research, there are perceived challenges in qualitative studies with this population due to several factors, including (self-)stigma, assessment of decision-making capacity, reduced communication skills and the (perceived) risk of adverse events, resulting in its scarcity.
In this contribution, the authors share their practical experiences of conducting qualitative research among this group of people, specifically addressing sensitive topics such as ongoing intensive care within a mental health facility and end-of-life care. Both advantageous and challenging factors that were encountered during different research phases -the preliminary phase, conducting the interviews and the concluding phase are systematically outlined.
The findings highlight conscientious conducted in accordance with established standards, albeit with a deliberate embrace of non-conventional approaches while advocating an attitude of critical, ethical reflection. Adequate preparation, fostering creative approaches and adaptable communication to establish rapport and authentic interaction, thorough follow-up and support for all involved are equally crucial to sustain effective qualitative research.
Engaging people experiencing SPMI in research is as a cornerstone for empowerment-a feasible aspiration. Their inclusion in research endeavours is imperative, because first-hand narratives are key in shaping comprehensive and compassionate care practices for those experiencing severe and persistent mental illness.
患有严重和持续性精神疾病（SPMI）的人在医疗保健系统和社会中属于弱势群体。同样，在研究中，由于多种因素，包括（自我）污名化、决策能力评估、沟通能力下降以及（感知到的）不良事件风险，人们认为对这一人群进行定性研究存在挑战，导致此类研究相对较少。
在本文中，作者分享了他们在这一人群中开展定性研究的实践经验，特别是针对精神卫生机构内持续重症监护和临终关怀等敏感话题。系统地概述了在不同研究阶段（初步阶段、进行访谈和总结阶段）遇到的有利和有挑战的因素。
研究结果强调了根据既定标准进行的有意识的研究，尽管在倡导批判、伦理反思的态度时，有意采用了非传统方法。充分的准备、培养创造性方法和适应性沟通以建立融洽关系和真实互动、对所有相关人员进行全面随访和支持对于维持有效的定性研究同样至关重要。
让患有 SPMI 的人参与研究是赋权的基石——这是一个可行的目标。让他们参与研究工作至关重要，因为第一手叙述对于为患有严重和持续性精神疾病的人塑造全面和富有同情心的护理实践至关重要。
