Challenges and priorities in researching and managing altered perceptual experiences: Shared academic and lived experience perspectives

Within clinical environments and empirical research, discussions of atypical perceptual experiences (APE; i.e., hallucination) tend to centre on voice-hearing (auditory-verbal hallucinations) in psychotic disorders, with other sensory modalities and psychiatric conditions often neglected. Similarly overlooked are lived experience (LE) perspectives of APE, despite valuable insights that may be gleaned to advance research and clinical practice. The present paper presents a participatory collaboration between a panel of five people with lived experience of APEs and seven APE researchers who worked together on a review of the literature on APEs. LE perspectives were synthesised by researchers with thematic analysis of material generated in five LE consultation sessions held during the course of the project. This revealed six primary themes: (i) challenges during diagnosis and treatment; (ii) what is missing in clinical environments; (iii) underacknowledged cultural and subcultural factors; (iv) stigma; (v) priority areas for developing treatments and; (vi) priority areas for advancing research. Overall, a common sentiment emerged, in that the perception and treatment of APE within the mental health system can often be highly stigmatising, disempowering and distressing. It is hoped that recommendations outlined here may forge more positive and productive treatment experiences for persons distressed by their APE, irrespective of diagnosis.