Table 1.

Study characteristics

Authors	Year	Country	Participants	Demographics	Study aim	Research design and methods	Fear of relapse assessment	Wellbeing assessment	Key summary	Quality (MMAT)
Baier	1995	USA	8 people diagnosed with schizophrenia, 5 carers	Age of participants with a diagnosis of schizophrenia: 48.8 (SD = 17.34) 73% female	To understand how persons living with chronic schizophrenia describe and live with the uncertainty of the illness	Semi-structured interviews	Qualitative	Qualitative	Uncertainty is a component of life with schizophrenia. The uncertainties concern the future, the medication, and the probability and time until relapse but they can also offer an opportunity for hope	3
Baker	1995	Canada	15 people diagnosed with schizophrenia	Age: 18 y/o—1; 20–29 y/o—2; 30–39 y/o—6; 40–49—4; 50–59—1; 70—1; 33% females	To identify how individuals witch schizophrenia detect early signs of relapse	Qualitative interview	Qualitative	Qualitative	Emotional distress was dominating participants' narratives. Participants actively fear relapsing. Immediate fears: losing equanimity, return of the distress related to their relapse, and impact of relapse on daily life	4
Collet et al.	2016	UK	16 people with persecutory delusions and a clinical diagnosis of non-affective psychosis	Age: 45.6 (SD = 12.1), 52% female	To explore correlates of wellbeing in people diagnosed with schizophrenia who experience persecutory delusions	Cross-sectional survey	MHWQ [33]	BDI [61], BSS [62], RSES [63]	MHWQ showed significant positive correlations with BDI and BSS and significant negative correlations with RSES	4
Sandhu	2013	UK	8 participants diagnosed with schizophrenia post-schizophrenic depression	Age: 25.4 (SD = 5), 38% females	To explore the post-psychotic depression in first episode psychosis and its phenomenological features	Qualitative interview and photo elicitation	Qualitative	Qualitative	Participants reported depression as linked to their experience of psychosis, the psychotic episodes were also leading to trauma, shame, doubt, and embarrassment	5
White and Gumley	2009	UK	27 people diagnosed with schizophrenia	Age: overall: 39.05; Non-PTSD group: 38.5 (10.7); PTSD group: 39.6 (10.3). Overall: 26% females; Non-PTSD group: 29% females; PTSD group: 20% females	To explore whether people with fear of relapse meet PTSD caseness	Quantitative descriptive	FoRSe	HADS [38], PP-PTSD (refers to unpublished source)	PTSD caseness was associated with fear of relapse, intolerance of uncertainty, and negative appraisals of paranoia. Fear of relapse was a significant predictor of PTSD caseness	4
Lal	2017	Canada	24 carers	Age: 49.6 (8.7), 75% female	To explore family perspectives on schizophrenia relapse in first-episode psychosis	Qualitative descriptive	Qualitative	Qualitative	The underlying theme in focus groups was worry, fear and anxiety concerning relapse related to the impact of the episode of psychosis, lack of confidence in coping skills and available clinical and emotional support	4
Gumley et al.	2015	UK	168 "relapse prone" people diagnosed with schizophrenia	Age: overall: 41.48; Group 1: 40.74 (11.33); Group 2: 42.22 (10.90); Overall: 28% females; Group 1: 23% females; Group 2: 34% females	To establish the reliability and validity of the Fear of Recurrence Scale as well as the sensitivity and specificity to relapse	Randomised control trial	FoRSe	CDS [64]	Significant positive correlation (r = 0.42) between FoRSe and CDS	4
Bassett, Sperlinger and Freeman	2009	UK	25 people diagnosed with persecutory delusions and a diagnosis of schizophrenia, schizoaffective disorder or delusional disorder or bipolar affective disorder or depression	Age: overall: 42.42; Group 1: 43.52 (13.57); Control group: 41.32 (12.28)	To investigate the presence of fear of madness in individuals with persecutory delusions and whether that fear is linked to paranoia	Quantitative non-randomized control trial	WAMH [33]	BAI [36], PSWQ [37]	Participants with persecutory delusions had higher levels of fear of madness than the control group on WAMH scales. Fear of madness was associated with higher levels of worry, anxiety, and distress	4
Herz and Melville	1980	USA	145 people with a diagnosis of schizophrenia; 80 relatives and carers	Age: overall: 38; Group 1: 38; Group 2: 38; Overall: 68% females; Group 1: 67% females; Group 2: 70% females	To explore the perception of early signs of relapse in individuals with schizophrenia and their relatives	Quantitative descriptive	Endorsing "fear of going crazy"	Relapse	Fear of going crazy in 28.3% of participants	4