How to engage people experiencing severe and persistent mental illness in qualitative research: a descriptive and reflexive analysis

Abstract

Purpose: 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. Methods: 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. Results: 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. Conclusion: 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.