ReviewPsychopathology2023
The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics.
Review in Psychopathology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 4 of them syntheses that pooled it.
What it found
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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
34 citing papers in PubMed, 4 syntheses or guidelines pooled it, 47 citations in OpenAlex.
- "Short" Versus "Long" Duration of Untreated Psychosis in People with First-Episode Psychosis: A Systematic Review and Meta-Analysis of Baseline Status and Follow-Up Outcomes.Schizophrenia bulletin · 2025Pooled it
- The qualitative accounts of black informal carers of people with psychosis and their experiences accessing mental health services: a systematic review.Archives of public health = Archives belges de sante publique · 2025Pooled it
- Digital Health Interventions for Informal Family Caregivers of People With First-Episode Psychosis: Systematic Review on User Experience and Effectiveness.JMIR mental health · 2024Pooled it
- Why we need to pursue both universal and targeted prevention to reduce the incidence of affective and psychotic disorders: Systematic review and meta-analysis.Neuroscience and biobehavioral reviews · 2024Pooled it
- The lived experience of trans persons: a bottom-up review co-written by experts by experience and academics.World psychiatry : official journal of the World Psychiatric Association (WPA) · 2026Article
- Psychosis Polyrisk Score and Polygenic Risk Score to Improve Detection and Prognosis in Individuals at Clinical High Risk for Psychosis: Model Development and Internal Validation.Schizophrenia bulletin · 2026Article
- From 'Emotional Storm' to Post-Traumatic Growth Among Caregivers of Individuals with Mental Illness and Substance Use Disorders: An Integrative Review.Nursing reports (Pavia, Italy) · 2026Review
- Real-world comprehensive care of people living with schizophrenia: recommendations across different settings and clinical stages.World psychiatry : official journal of the World Psychiatric Association (WPA) · 2026Article
- Predicting long-term poor outcomes in individuals at clinical high risk for psychosis using real-world clinical data: the OASIS1000 prospective study.World psychiatry : official journal of the World Psychiatric Association (WPA) · 2026Article
- CareVR, a Virtual Reality assisted communication training programme to support informal carers of people with psychosis: a feasibility study.BMC psychiatry · 2026Article
- Illuminating a joyless life: qualitative, transdiagnostic exploration of anhedonia.BJPsych open · 2026Article
- Development and validation of a precision treatment rules for first-line antipsychotic recommendations in first episode psychosis jointly incorporating effectiveness, side effects and patient preferences.Translational psychiatry · 2026Article
- The Mini-CAARMS: Development and Validation of a Short Version of the Comprehensive Assessment of AT Risk Mental States to Facilitate Preventive Psychiatry.Schizophrenia bulletin · 2026Article
- Identifying Research Priorities in Early Psychosis: A Collaborative Approach to Shaping the Future of Early Psychosis Clinical Trials in Australia.Early intervention in psychiatry · 2026Article
- Exploring the role of carers in psychiatric home treatment: qualitative multi-method study.BMC psychiatry · 2026Article
- The lived experience of persons who attempt suicide: a bottom-up review co-designed, co-produced and co-written by experts by experience and academics.World psychiatry : official journal of the World Psychiatric Association (WPA) · 2026Article
- Family psychoeducation to support patients with psychotic illness: two-year outcomes from a pre-post longitudinal pilot study.Frontiers in psychiatry · 2026Article
- Supporting family caregivers: Variations in caregiving among families managing chronic health conditions.The American psychologist · 2025Article
- 'More blessing than burden' African family carers' beliefs and experiences caring for their older relatives in New South Wales, Australia.BMC nursing · 2025Article
- Longitudinal evolution of the transdiagnostic prodrome to severe mental disorders: a dynamic temporal network analysis informed by natural language processing and electronic health records.Molecular psychiatry · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
17 authors at 4 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Informal caregivers of individuals affected by psychotic disorder can play a key role in the recovery process. However, little research has been conducted on the lived experiences of carers and family members. We conducted a bottom-up (from lived experience to theory) review of first-person accounts, co-written between academics and experts by experience, to identify key experiential themes. First-person accounts of carers, relatives, and individuals with psychosis were screened and discussed in collaborative workshops involving individuals with lived experiences of psychosis, family members, and carers, representing various organizations. The lived experiences of family members and carers were characterized by experiential themes related to dealing with the unexpected news, the search for a reason behind the disorder, living with difficult and negative emotions, dealing with loss, feeling lost in fragmented healthcare systems, feeling invisible and wanting to be active partners in care, struggling to communicate with the affected person, fighting stigma and isolation, dealing with an uncertain future, and learning from one's mistakes and building resilience and hope. Our findings bring forth the voices of relatives and informal carers of people with psychosis, by highlighting some of the common themes of their lived experiences from the time of the initial diagnosis and throughout the different clinical stages of the disorder. Informal carers are key stakeholders who can play a strategic role, and their contributions in the recovery process merit recognition and active support by mental health professionals.
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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.