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.

Keywords

• spmi
• vulnerable population
• qualitative interview
• palliative care approach
• end-of-life care