SynthesisSchizophrenia bulletin2022
Uses and Misuses of Recorded Mental Health Lived Experience Narratives in Healthcare and Community Settings: Systematic Review.
Synthesis in Schizophrenia bulletin, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 53 citations in OpenAlex.
- Ethical and Legal Considerations in the Collection and Analysis of Mental Health Lived Experience Narratives: Reflections on 4 Case Studies of Research Practice.JMIR formative research · 2026Article
- For Clinicians Who Write Essays About Patients: Conceptual Review of Consent and Ethical Considerations.Journal of general internal medicine · 2026Review
- "…pretty much all white, and most of them are psychiatrists and men": Mixed-methods analysis of influence and challenges in global mental health.PLOS global public health · 2025Article
- Effectiveness and cost-effectiveness of online recorded recovery narratives in improving quality of life for people with psychosis experience (NEON Trial): a pragmatic randomised controlled trial.The Lancet regional health. Europe · 2024Article
- Participatory development of evidence-based patient narrative videos for patients with eating disorders: a methodological approach and pilot data.Journal of eating disorders · 2024Article
- The Implementation of Recommender Systems for Mental Health Recovery Narratives: Evaluation of Use and Performance.JMIR mental health · 2024Article
- Effectiveness and cost-effectiveness of online recorded recovery narratives in improving quality of life for people with non-psychotic mental health problems: a pragmatic randomized controlled trial.World psychiatry : official journal of the World Psychiatric Association (WPA) · 2024Article
- Article
- Perception and appropriation of a web-based recovery narratives intervention: qualitative interview study.Frontiers in digital health · 2024Article
- "Nothing's changed, baby": How the mental health narratives of people with multiple and complex needs disrupt the recovery framework.SSM. Mental health · 2023Article
- Assessing Diversity and Inclusivity is the Next Frontier in Mental Health Recovery Narrative Research and Practice.JMIR mental health · 2023Article
- Article
- 'Maybe I Shouldn't Talk': The Role of Power in the Telling of Mental Health Recovery Stories.Qualitative health research · 2022Article
- Development and delivery cost of digital health technologies for mental health: Application to the Narrative Experiences Online Intervention.Frontiers in psychiatry · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors at 5 institutions in 3 countries.
Funding
Abstract
Mental health lived experience narratives are first-person accounts of people with experience of mental health problems. They have been published in journals, books and online, and used in healthcare interventions and anti-stigma campaigns. There are concerns about their potential misuse. A four-language systematic review was conducted of published literature characterizing uses and misuses of mental health lived experience narratives within healthcare and community settings. 6531 documents in four languages (English, Danish, Swedish, Norwegian) were screened and 78 documents from 11 countries were included. Twenty-seven uses were identified in five categories: political, societal, community, service level and individual. Eleven misuses were found, categorized as relating to the narrative (narratives may be co-opted, narratives may be used against the author, narratives may be used for different purpose than authorial intent, narratives may be reinterpreted by others, narratives may become patient porn, narratives may lack diversity), relating to the narrator (narrator may be subject to unethical editing practises, narrator may be subject to coercion, narrator may be harmed) and relating to the audience (audience may be triggered, audience may misunderstand). Four open questions were identified: does including a researcher's personal mental health narrative reduce the credibility of their research?: should the confidentiality of narrators be protected?; who should profit from narratives?; how reliable are narratives as evidence?).
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.