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. Author manuscript; available in PMC: 2024 Jun 1.
Published in final edited form as: J Psychiatr Res. 2023 May 4;162:220–227. doi: 10.1016/j.jpsychires.2023.05.035

Discrepancies Between Self and Caregiver Perceptions of Agency in First-Episode Psychosis

Henry R Cowan 1,*, Nancy B Lundin 1, Aubrey M Moe 1,2, Nicholas J K Breitborde 1,2
PMCID: PMC10225345  NIHMSID: NIHMS1900969  PMID: 37201222

Abstract

Personal agency—a key element of recovery from psychotic disorders—is formed and maintained in large part through interactions with others. Interactions with caregivers are particularly important in first-episode psychosis (FEP), as these interactions form the foundations for lifelong caregiving relationships. The present study examined shared understandings of agency (operationalized as efficacy to manage symptoms and social behaviors) within families affected by FEP. Individuals with FEP (n=46) completed the Self-Efficacy Scale for Schizophrenia (SESS) and measures of symptom severity, social functioning, social quality of life, stigma, and discrimination. Caregivers (n=42) completed a caregiver version of the SESS assessing perceptions of their affected relative’s self-efficacy. Self-rated efficacy was higher than caregiver-rated efficacy in all domains (positive symptoms, negative symptoms, and social behavior). Self- and caregiver-rated efficacy correlated only in the social behavior domain. Self-rated efficacy was most associated with lower depression and stigmatization, whereas caregiver-rated efficacy was most associated with better social functioning. Psychotic symptoms did not relate to self- or caregiver-rated efficacy. Individuals with FEP and caregivers have discrepant perceptions of personal agency, perhaps because they base perceptions of agency on different sources of information. These findings highlight specific targets for psychoeducation, social skills training, and assertiveness training to develop shared understandings of agency and facilitate functional recovery.

Keywords: First-episode psychosis, Agency, Self-Efficacy, Caregivers, Functional recovery

Individuals living with psychotic disorders often describe a frustrated sense of personal agency (the fundamental human need for individuality, autonomy, achievement, and mastery) (Bakan, 1966; Cowan et al., 2021; Deci and Ryan, 2000; McAdams, 1988). The absence of personal agency has been identified as a key impediment to functional recovery in psychotic disorders (Lysaker and Leonhardt, 2012; Lysaker et al., 2003) because it interferes with planning and enacting behaviors; generating long-term personal goals and projects; and interacting with others (Lysaker et al., 2012). Increased agency is therefore considered to be an important component—or even a necessary precursor—of functional recovery from psychotic disorders (Andresen et al., 2003; Bellack and Drapalski, 2012; Davidson and Strauss, 1992; Deegan, 2002; Lysaker et al., 2003; Lysaker and Klion, 2017).

Agency is typically measured by proxy constructs such as self-efficacy, one’s confidence in being able to enact a behavior successfully (Bandura, 1997; Samman and Santos, 2009). Self-efficacy has been called “the foundation of human agency” (Bandura, 2006, p. 170) for its key role in directing cognitive, motivational, and affective processes toward coherent, personally relevant goals (Bandura, 1992). Self-efficacy can be defined globally, as a general confidence in one’s ability to execute chosen behaviors, or in specific domains, as confidence in one’s ability to execute specific classes of behaviors (Bandura, 1997). Self-efficacy, both general and domain specific, has been theorized to support functional recovery from psychotic disorders (Bellack and Drapalski, 2012) and has been shown to support self-esteem (Suzuki et al., 2011), life satisfaction (Suzuki et al., 2011), effective coping (Macdonald et al., 1998), and community functioning (Cardenas et al., 2013; Kurtz et al., 2013; Lee et al., 2021) in individuals with psychotic disorders.

Perceptions of personal agency are formed and maintained through interactions with others and the environment (Alexander, 2004; Lysaker et al., 2020), particularly with one’s caregivers (Bandura, 2006). Caregiver support is an essential components of recovery for many individuals with psychotic disorders (Ho et al., 2010; Jaiswal et al., 2020; Roosenschoon et al., 2019; Soundy et al., 2015). When individuals with psychotic disorders are satisfied with the social support they receive, their self-efficacy tends to improve, leading to improvements in symptoms and subjective recovery (Thomas et al., 2016). Moreover, caregiver perceptions of their relative’s efficacy to control positive symptoms are associated with important aspects of the caregiving relationship (e.g., high levels of criticism or emotional over-involvement) and are predictive of future symptomatic relapse (Breitborde et al., 2013, 2009). Therefore, both individual and caregiver perceptions of efficacy seem to be important for the effectiveness of caregiving relationships. However, prior studies have found lower caregiver-ratings of efficacy than those typically self-reported by individuals with psychotic disorders (Breitborde et al., 2013), indicating possible discrepancies between self and caregiver perceptions of efficacy.

Moreover, little is known about the development of agency-supporting caregiving relationships in the early stages of psychotic illness. From caregivers’ perspectives, a first episode of psychosis (FEP) suddenly introduces unpredictable emotional, practical, and financial challenges, often causing grief, guilt, and anxiety (Dillinger and Kersun, 2020; McCann et al., 2011). At the same time, positive aspects of the caregiving relationship and hope for their relative are key sources of resilience (Jansen et al., 2015; McCann et al., 2011). Caregivers often report being concerned for their relative’s self-esteem (Iyer et al., 2011), indicating an awareness of issues with personal agency. This concern is justified, as self-efficacy enables effective coping and functioning among individuals with FEP (Macdonald et al., 1998; Ventura et al., 2014). Discrepancies between self and caregiver perceptions of efficacy could be particularly important in FEP, as individual-caregiver interactions during this stage of illness lay the foundation for lifelong caregiving relationships.

Furthermore, it is unknown what factors might influence discrepancies between self- and caregiver-rated efficacy. Self-efficacy has been shown to correlate with symptomatology (Devoe et al., 2021; Hill and Startup, 2013; Pratt et al., 2005); social and functional variables (Cardenas et al., 2013; Lee et al., 2021; Morgades-Bamba et al., 2019; Vauth et al., 2007); and experiences of stigmatization and discrimination (Kleim et al., 2008; Lysaker et al., 2008; Park et al., 2013; Wahl, 1999). This wide network of associations raises the possibility that individuals and their caregivers may base perceptions of efficacy on different sources of information. If self- and caregiver-rated efficacy correlate with different covariates, this could suggest hypotheses for future longitudinal, experimental, or intervention studies of mechanisms supporting the growth of agency in caregiving relationships.

In sum, the present work addressed two important next steps in the study of self and caregiver perceptions of agency: 1., to compare self- and caregiver-rated efficacy within families affected by FEP; and 2., to examine relationships between self-/caregiver-rated efficacy and relevant covariates (symptoms, social factors, and social exclusion). Based on previous research, we hypothesized that self-rated efficacy would be higher than caregiver-rated efficacy. Analyses of covariates were treated as exploratory.

Material and Methods

Participants

Participants were 46 individuals who had experienced a first episode of psychosis within the past five years and 42 caregivers. Participants were recruited in an outpatient coordinated specialty care program for first-episode psychosis (FEP) in a midsize urban area in the southwestern United States. All individuals initiating treatment in the clinic were invited to participate, and all caregivers identified by an individual receiving treatment were invited to participate. No participants had received FEP-specific outpatient treatment prior to enrollment in the clinic. Of the 42 caregivers, 22 were joint caregivers for a single individual, and 20 were sole caregivers. Of the 46 individuals with FEP, 31 had caregiver(s) participate in the study, and 15 did not (these 15 are included in the present study as their data are informative for within-group analyses). Sample characteristics are shown in Table 1.

Table 1.

Participant Characteristics

Individuals with FEP Caregivers
N or mean % or SD N or mean % or SD
Gender (male) 34 74% 18 43%
Age (years) 22.6 3.8 53.6 9.1
Education (years) 13.0 2.2 16.1 2.2
Race
 White 37 80% 39 93%
 Black 1 2% 1 2%
 Two or more 8 17% 2 5%
Hispanic/Latino 14 30% 6 14%
Diagnosis
 Schizophrenia-spectrum 29 63%
 Mood with psychotic features 17 37%
Prescribed antipsychotic medication 41 89%
Duration untreated psychosis (median) 11.6 13.8
Relationship
 Parent 36 86%
 Grandparent 2 4%
 Othera 4 9%
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Note: 22 caregivers (52%) shared an affected relative with another caregiver in the study.

a

Other caregiving relationships included 2 mothers-in-law, 1 sister, and 1 partner

Procedures

At entry into the treatment program, participants with FEP completed assessments in person, including clinician-rated symptom measures and self-reported measures of self-efficacy, functioning, quality of life, stigma, and discrimination. Caregivers completed efficacy ratings via forms sent home with FEP participants, to facilitate participation of caregivers who did not typically attend their relatives’ clinic appointments. All procedures were approved by the academic medical center Institutional Review Board. All participants and caregivers provided written informed consent.

Materials

Efficacy was assessed in individuals with FEP by the Self-Efficacy Scale for Schizophrenia (SESS; McDermott, 1995), a 57-item self-report measure with three subscales assessing confidence in one’s ability to manage positive symptoms, negative symptoms, and social interactions.1 Internal consistencies were acceptable for all subscales (positive α=.93, ωhierarchical=.86; negative α=.93, ωhierarchical=.69; social α=.93, ωhierarchical=.67).2 The caregiver version of the SESS (Breitborde et al., 2013) asks caregivers how well they believe their affected relative can manage positive symptoms, negative symptoms, and social interactions. Internal consistencies of the caregiver version were acceptable for all subscales (positive α=.92, ωhierarchical=.64; negative α=.95, ωhierarchical=.76; social α=.93, ωhierarchical=.61).

Positive and negative psychotic symptoms were assessed by the Positive and Negative Syndrome Scale (PANSS; Kay et al., 1987), a 30-item clinician-rated measure of positive, negative, and general symptoms. Depression was assessed by the Calgary Depression Scale for Schizophrenia (CDSS; Addington et al., 1993), a 9-item clinician-rated measure of depression severity. All raters completed training on the PANSS and CDSS and achieved excellent levels of inter-rater reliability (intraclass correlation ≥ .80) with gold standard ratings prior to administering study assessments.

Social functioning was assessed by the Social Functioning Scale (SFS; Birchwood et al., 1990), a 75-item self-report measure assessing social engagement, interpersonal relationships, prosocial engagement, recreation, independence-competence, independence-performance, and employment. Internal consistency measured by Cronbach’s alpha was acceptable for the SFS, α=.89, while ωhierarchical=.41 indicated that subfactors accounted for a substantial portion of variability, consistent with meaningful differences between various subscales of the SFS. Social quality of life was assessed by the Social Relationships subscale of the World Health Organization Quality of Life Questionnaire-Brief Version (WHOQOL-BREF; The WHOQOL Group, 1998), a 24-item self-report measure of quality of life. The social relationships subscale includes 3 items assessing perceived quality of personal relationships, social support, and sexual activity. As expected, given the small number of items on this subscale, internal consistency was lower, α=.60, ωhierarchical=.56.

Perceived stigma and discrimination were assessed by the Consumer Experiences of Stigma Questionnaire (CESQ; Wahl, 1999), a 21-item self-report scale of experiences of stigmatization (e.g., being shunned or avoided due to their diagnosis) and discrimination (e.g., having difficulty obtaining housing due to their diagnosis). The CESQ was developed to capture the experiences of individuals with serious mental illness including psychotic disorders (Wahl, 1999). Internal consistency was acceptable for both subscales (stigma α=.78, ωhierarchical=.73; discrimination α=.83, ωhierarchical=.67).

Data Analysis

Analysis Plan

All analyses were conducted in R (R Core Team, 2018). First, mean differences between self- and caregiver-rated efficacy were examined by two-tailed t-tests. Second, pairwise associations between self- and caregiver-rated efficacy were tested by βRC, defined in “Clustered Analyses” below. Third, relationships between self-rated efficacy and clinical/functional covariates were examined by Pearson correlations (to test bivariate relationships) and hierarchical regression (to test the incremental effects of symptoms, social factors, and stigma/discrimination). Fourth, relationships between caregiver-rated efficacy and clinical/functional covariates were examined by βRC (defined below) and hierarchical regression with robust clustered standard errors.

Clustered Analyses

Some data were clustered in families with joint caregivers for a single relative with FEP, in which case standard correlation and linear regression methods would produce overly liberal p-values. To account for clustering, regression models were instead calculated with robust standard errors clustered by participant ID. To approximate correlations for pairwise relationships with clustered data, standardized coefficients were extracted from univariate regression models with robust standard errors (notated in the text as robust clustered standardized beta, or βRC).

Other Analytical Considerations

Due to high observed correlations between the three efficacy subscales, and to limit the number of statistical comparisons, efficacy ratings were combined into an overall efficacy score for regression analyses (mean of the three efficacy subscales). Hierarchical regression model comparisons were conducted using the multivariate Wald statistic (aka. D1), which approximates a likelihood ratio test but is more robust to sample size with multiply imputed datasets (van Buuren, 2018, sec. 5.3.4). For mean differences and correlations, p-values were adjusted for multiple comparisons by False Discovery Rate correction (Benjamini and Hochberg, 1995). Missing data were handled by multiple imputation with predictive mean matching, with analyses pooled across five imputed datasets (van Buuren, 2018).

Supplemental Analyses

Two additional analyses were conducted. First, to test whether insight accounted for observed effects in individuals with FEP, the PANSS “Lack of Judgement and Insight” item was added as a 4th block to the self-rated regression models. Second, due to low ωhierarchical for the SFS, relationships between SFS scores and caregiver-rated efficacy were also examined at the level of SFS subscales (as βRC).

Results

Mean Comparisons

As shown in Figure 1, self-rated efficacy was higher in all domains (means=66–70 on a 100-point scale) than caregiver-rated efficacy (means=52–56). The largest mean difference between individual- and caregiver-rated efficacy was observed in the negative symptom domain, t(82.0)=4.31, pFDR < .001, d=0.92, followed by the positive symptom domain, t(84.9)=2.88, pFDR=.007, d=0.61, and the social behavior domain, t(85.9)=2.47, pFDR=.015, d=0.53.

Figure 1.

Figure 1.

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Differences between self- and caregiver-rated efficacy for individuals with first-episode psychosis (FEP). Caregiver ratings (n=42) were lower than self ratings (n=46) for all domains, including efficacy to manage positive symptoms (d=.61), negative symptoms (d=.92), and social interactions (d=.53). All group differences were significant, pFDR<.02.

Correlations

As shown in Table 2 and Figure 2, self- and caregiver-rated efficacy were related in the social efficacy domain, βRC=.442, pFDR=.044, but not in the domains of positive, βRC=.216, pFDR=.114, or negative symptom efficacy, βRC=.181, pFDR=.208.

Table 2.

Descriptive Statistics and Relationships Between Study Variables

Relationships Between Study Variables
N M SD 1 2 3 4 5 6 7 8 9 10 11 12
Self-Rated Efficacy
 1. Pos Symptom Efficacy 46 68.6 22.4
 2. Neg Symptom Efficacy 46 70.5 19.0 .83***
 3. Social Efficacy 46 65.9 21.6 76*** 79***
Symptoms
 4. Positive Symptoms 42 2.14 0.79 −.15 −.11 −.04
 5. Negative Symptoms 42 2.13 0.80 −.14 −.07 −.25 .04
 6. Depression 42 0.64 0.58 −.45* −.41* −.46* .10 .34
General social factors
 7. Social Function 46 100.9 8.27 .23 .41* .42* −.28 −.21 −.20
 8. Social Quality of Life 42 64.3 23.4 .17 .38* .16 .06 .27 .05 .04
Social exclusion
 9. Stigma 45 3.07 0.71 −.51** −.48* −.43* .16 −.01 .22 −.17 −.23
 10. Discrimination 45 1.73 0.63 −.09 −.15 −.04 .04 .27 .01 −.02 −.07 .51**
Caregiver-rated efficacy
11. Pos Symptom Efficacy 42 56.1 18.3 .22 .19 .23 −.26 −.12 −.20 .41 ** .19 −.31 −.22
12. Neg Symptom Efficacy 42 51.7 21.7 .24 .18 .24 −.27 −.09 .06 .46 ** .09 −.19 −.07 .68***
13. Social Efficacy 42 54.9 24.9 .33 .27 .44 * −.36 −.28 −.11 49 *** .09 −.38 * −.28 78*** 83***
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Note: Relationships between caregiver variables and affected relative variables (in italics) shown as robust clustered standardized betas (see text, “2.4 Data Analysis” for details). All other relationships shown as Pearson correlations. Self-efficacy assessed by the patient and caregiver versions of the Self-Efficacy Scale for Schizophrenia.

*

FDR-corrected p<.05,

**

FDR-corrected p<.01,

***

FDR-corrected p<.001.

Figure 2.

Figure 2.

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Self-ratings of efficacy for individuals with first-episode psychosis (n=46) were primarily associated with depression and stigma experiences, while caregiver ratings (n=42) were primarily associated with affected relatives’ social functioning (see also Table 1, including p values). Values outside the dotted line are Pearson correlation coefficients. Values inside the dotted line are robust clustered standardized betas (see text, 2.4 Data Analysis, for details). Self-efficacy assessed by the patient and caregiver versions of the Self-Efficacy Scale for Schizophrenia. Pos Eff: efficacy to manage positive symptoms; Neg Eff: efficacy to manage negative symptoms; Soc Eff: efficacy to manage social behavior; Soc function: social functioning; Soc QoL: social quality of life.

Relationships with Covariates

As shown in Table 2 and Figure 2,3 the largest correlations for self-rated efficacy were observed for depression, r=−.413 to −.462, all pFDR<.019, and stigmatization, r=−.431 to −.509, all pFDR<.015. By contrast, the largest standardized coefficients for caregiver-rated efficacy were observed for social functioning, βRC=.412 to .491, all pFDR<.011.

Incremental Effect of Covariates

As shown in Table 3 and Figure 3, when self-rated efficacy was predicted from symptoms alone (Model 1), depression uniquely predicted lower perceived efficacy, β=−.469, p=.002. In Model 2 (adding general social factors), model fit did not significantly improve, Wald(2)=2.77, p=.075, and depression remained the only unique predictor of perceived efficacy, β=−.431, p=.004. In Model 3 (adding social exclusion), model fit improved, Wald(2)=5.28, p=.013, and stigma, β=−.530, p=.002, and depression, β=−.297, p=.032, uniquely predicted lower perceived efficacy.

Table 3.

Incremental Validity of Symptoms, Social Factors, and Stigma/Discrimination to Predict Individual and Caregiver Perceptions of Efficacy: Standardized Coefficients from Hierarchical Regression Models

Self-Rated Efficacy Caregiver-Rated Efficacy
Model 1 Model 2 Model 3 Model 1 Model 2 Model 3
Positive symptoms −.056 −.007 .048 −.352* −.253 −.258
Negative symptoms −.052 −.073 −.193 −.213 −.094 −.037
Depression −.469** −.430** −.297* −.052 −.007 −.034
Social function .230 .167 .409* .428*
Social quality of life .204 .123 .328* .285
Stigma −.530** .053
Discrimination .262 −.243
Model R 2 .249 .344 .510 .167 .370 .413
Change In R 2 .095 .166 .203 .043
Wald stat. 2.77 5.28* 5.67** 0.88
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Note: Caregiver models were calculated with robust clustered standard errors. Overall efficacy in these models was calculated as the mean of positive symptom efficacy, negative symptom efficacy, and social efficacy on the Self-Efficacy Scale for Schizophrenia, patient and caregiver versions. Individuals with FEP n=46, caregiver n=42.

Figure 3.

Figure 3.

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Self-ratings of efficacy for individuals with first-episode psychosis (n=46) were uniquely predicted by depression and stigmatization, while caregiver ratings (n=42) were uniquely predicted by social factors. Standardized coefficients and 95% confidence intervals plotted from hierarchical regression analyses (see also Tables 2 and 3). Blue indicates a significant positive coefficient; red indicates a significant negative coefficient (p<.05). Stars indicate significant improvements in model fit, *p<.05; **p<.01 Self-efficacy assessed by patient and caregiver versions of Self-Efficacy Scale for Schizophrenia.

When caregiver-rated efficacy was predicted from symptoms alone (Model 1), positive symptoms uniquely predicted lower perceived efficacy, β=−.352, p=.035. In Model 2 (adding general social factors), model fit improved, Wald(2)=5.67, p=.007, and social functioning, β=.409, p=.039, and social quality of life, β=.328, p=.033, uniquely predicted higher perceived efficacy. In Model 3 (adding social exclusion), model fit failed to improve, Wald(2)=0.88, p=.430, and only social functioning uniquely predicted higher perceived efficacy, β=.428, p=.030.

Additional Analyses

Effect of Insight.

To examine whether effects for individuals with FEP could be accounted for by insight, Model 4 was calculated with all predictors in the hierarchical regression Model 3, plus PANSS “Lack of Judgement and Insight”. Model fit failed to improve over Model 3, Wald(1)=0.634, p=.470; no independent effect was observed for insight, β=−.119, p =.432; and depression and stigma both remained significant predictors of efficacy at (β=−.541 and β=−.383, respectively, both p<.05).

SFS Subscales.

Pairwise associations between social functioning and caregiver-rated efficacy were also examined at the level of SFS subscales. The SFS subscales of interpersonal communication, βRC=.532, pFDR<.001, independence-performance, βRC=.412, pFDR=.027, and prosocial performance, βRC=.334, pFDR=.021, were associated with caregiver-rated efficacy. Social engagement/withdrawal may also have been associated with caregiver-rated efficacy, although this effect did not survive correction for multiple comparisons, βRC=.307, pFDR=.055. The SFS subscales of recreational activities, independence-competence, and employment/occupation did not relate to caregiver-rated efficacy (all pFDR>.146).

Discussion

Despite the frustrated sense of personal agency commonly described by individuals with schizophrenia, the current sample of individuals with FEP reported a fair amount of confidence in their abilities to manage symptoms and interpersonal behaviors. As hypothesized, caregivers reported less confidence in their relatives’ abilities to manage symptoms and interpersonal behaviors. These efficacy ratings are comparable to ratings previously obtained from individuals with schizophrenia (McDermott, 1995) and caregivers of individuals with schizophrenia (Breitborde et al., 2013), suggesting that there is a robust and replicable gap in perceived efficacy between individuals with psychotic disorders and their caregivers.

The current study was the first to assess perceived efficacy within families, finding that self- and caregiver-rated efficacy varied independently in the domains of efficacy to manage positive symptoms and negative symptoms. By contrast, there was relative agreement between caregivers and affected relatives in the domain of efficacy for interpersonal behaviors. Caregivers likely have more information about their affected relatives’ interpersonal behaviors than their management of positive and negative symptoms, as interpersonal behaviors are readily apparent in daily interactions, leading to more relative agreement in this domain.

Relationships Between Efficacy and Clinical/Functional Variables

Self-Rated Efficacy

Self-rated efficacy was primarily related to depression and stigmatization. It is noteworthy that self-rated efficacy was related to depression and not to psychotic symptoms. Previous studies have found that depression has a larger impact than psychotic symptoms on distress and quality of life in FEP (Gardsjord et al., 2016; Sim et al., 2004; Vracotas et al., 2007), and that depression and anxiety mediate the effect of psychotic symptoms on subjective recovery in schizophrenia (Morrison et al., 2013). The present study reinforces these prior findings. Moreover, the symptom content of depressive symptoms suggests mechanisms by which depression, and not psychotic symptoms, may drive self-efficacy. Depression is primarily distinguished from negative psychotic symptoms by low mood, pessimism, and suicidal ideation (Krynicki et al., 2018). In cognitive models of depression, low mood and pessimism drive low self-efficacy, resulting in functional problems (Kavanagh, 1992). Negative self-beliefs also accompany depression throughout the psychosis spectrum (Cowan et al., 2019; Fowler et al., 2006; Patton et al., 2022; Smith et al., 2006) and mediate the effects of psychotic symptoms on social functioning (González-Blanch et al., 2020) and subjective recovery (Morrison et al., 2013). Cognitive theories of depression suggest that negative self-beliefs encode generalized expectations of low self-efficacy (Maddux and Meier, 1995). For individuals with FEP, depressive low mood, pessimism, and negative self-beliefs may undermine self-efficacy—and personal agency more broadly—impacting quality of life and interfering with functional recovery.

Stigmatization was also highly relevant for perceptions of self-efficacy in individuals with FEP. Stigmatization is a common experience for people diagnosed with psychotic disorders (Gerlinger et al., 2013) and nearly ubiquitous in first-episode psychosis (Pattison et al., 2022). Stigmatization is known to be important for self-efficacy: notably, it has been shown to predict poor general self-efficacy over and above depression in chronic schizophrenia (Kleim et al., 2008). In the current study, individuals who perceived themselves to be more stigmatized reported lower self-efficacy in all domains. In regression analyses, the effect of stigma was robust over and above the effects of psychotic symptoms, depression, and interpersonal factors. In fact, stigmatization had the largest independent effect of any variable. This suggests that stigmatization may be an underappreciated variable—both among caregivers and researchers—in understanding problems with personal agency in psychotic disorders.4

Caregiver-Rated Efficacy

Caregiver-rated efficacy was primarily related to their relative’s interpersonal functioning. Notably, caregiver perceptions of efficacy were not related to their relatives’ depressive symptoms. Caregivers tend to underestimate affected relatives’ depressive symptoms (Ford and McCoy, 2022), perhaps because depression is an internal experience whose extent or impact may not be apparent to caregivers. Interpersonal functioning, by contrast, is readily observable. The instrument used in this study, the SFS (which was self-reported by individuals with FEP), captures a wide range of activities. The SFS domains of interpersonal communication (e.g., “how easy do you find it to talk to people?”), independent social performance (e.g., “how often have you cooked a meal this month?”), and prosocial performance (e.g., “how often have you visited friends/relatives this month?”) were most linked to caregiver perceptions of efficacy. These domains are particularly relevant to family interactions and may therefore constitute a large portion of the information available to caregivers when they think about their affected relatives’ efficacy.

Clinical Implications

In positive caregiving relationships, caregivers provide a moderate level of support, modeling confidence and optimism for the future without becoming overinvolved in their loved ones’ daily lives (Kuipers et al., 2010). In these relationships, caregivers respect their loved ones’ autonomy, supporting the growth of personal agency (Kuipers et al., 2010). By contrast, emotionally overinvolved caregivers tend to be more pessimistic about their loved ones’ abilities (Breitborde et al., 2013, 2009) and attempt to compensate for perceived deficits and shield their loved one from difficult experiences by taking over activities of daily living (Kuipers et al., 2010). When caregivers perceive their loved ones to have higher self-efficacy, they are less likely to engage in these overinvolved parenting practices (Breitborde et al., 2013). Psychoeducation and problem-solving interventions have been shown to reduce expressed emotion, negative caregiving experiences, and perceived burden of caregiving (Sin et al., 2017). Based on the present study, one mechanism of action may be to increase caregivers’ perceptions of their relatives’ personal agency, nudging them away from emotionally overinvolved behaviors and toward positive caregiving behaviors.

At the same time, the lack of correlations between self-rated efficacy and social functioning suggests that individuals with FEP neglected to consider their own functional abilities when evaluating personal agency. Agency is a subjective construct and does not necessarily depend on one’s actual ability to complete tasks. However, agency alone is not enough for recovery—real-world functional capacity is also required to accomplish meaningful goals and improve one’s quality of life (Andresen et al., 2003; Bellack and Drapalski, 2012). For those individuals with FEP who already have high self-efficacy, interventions may be best directed toward improvements in functional capacity, for instance through social skills training (Bellack et al., 2013).

Conversely, for individuals with FEP who have lower self-efficacy, problems with self-efficacy may relate to depression and stigmatization. Depression and stigmatization can both be targeted in treatment. Cognitive behaviour therapy is well adapted to treating depression and can target self-efficacy via core belief modification (Beck, 2011). A recent meta-analysis concluded that assertiveness training is the most effective intervention to reduce stigmatization in psychotic disorders (Luo et al., 2022). Although assertiveness training typically does not reduce the rate at which individuals experience stigmatization experiences, it increases individuals’ confidence in their ability to respond effectively to stigma (Wood et al., 2016). This mechanism of action could be considered an improvement in domain-specific self-efficacy. Moreover, when individuals with FEP effectively advocate for themselves, they demonstrate observable socio-emotional skills to handle difficult interpersonal situations. Based on the present study’s results, this demonstration of interpersonal skills should have the knock-on effect of enhancing others’ perceptions of individuals’ personal agency. In sum, cognitive behavior therapy and assertiveness training should improve personal agency, social skills training should be particularly valuable when self-efficacy is high, and caregiver psychoeducation and assertiveness training should improve caregivers’ perceptions of their relatives’ personal agency.

Limitations and Future Directions

This study had some limitations. The sample size was only powered to detect medium to large effects, and study results would benefit from replication in larger samples. Participants were recruited through a single academic medical center in the Southwestern United States, and results may not generalize to other sociocultural contexts. Participants (especially caregivers) were predominantly Non-Hispanic White. Mitigating this concern somewhat, caregiver efficacy ratings were similar to those reported in an earlier study of Mexican-American caregivers of individuals with psychosis (Breitborde et al., 2013), although cross-cultural comparisons are complicated by different cultural conceptualizations of family relationships (Falzarano et al., 2022) and caregiving responsibilities (Lahaie et al., 2013). There may also have been selection bias, as caregivers who participated in this study may have been particularly closely involved in their relatives’ care.

In terms of measurement, social functioning was assessed via individuals’ self-report, whereas clinician-rated, caregiver-rated, or behavioral measures of social functioning would have provided important alternative perspectives on functional status, particularly as previous research has documented discrepancies between self- and caregiver-rated functioning (Rocca et al., 2021). Similarly, this study did not include any measures of relationship closeness between individuals with FEP and caregivers (e.g., Berscheid et al., 1989), which could account for discrepancies in perceived agency. Future research with more complete assessment of selfcaregiver relationships would be valuable.

Finally, further research with normative or clinical control groups would be valuable to determine the extent to which effects are specific to psychotic disorders or shared with other forms of mental illness (reflecting illness severity rather than specific psychotic symptoms) or even with the general population (reflecting general biases toward viewing oneself more favorably than others) (Sedikides and Gregg, 2008; Taylor and Brown, 1988).

Conclusion

This study found discrepancies between self and caregiver perceptions of agency in FEP. Individuals with FEP and their caregivers may base their perceptions of efficacy on different sources of information. Psychoeducation, social skills training, cognitive behavior therapy, and assertiveness training may help to shape caregiving relationships to further support the agency and functional recovery of individuals with first-episode psychosis.

Financial Support

This work was supported by a Research Innovation Career Development Award (RICDA) from the Ohio State University College of Medicine (to AMM) and by award number KL2TR002734 from the National Center for Advancing Translational Sciences (to AMM). The funding sources had no involvement in the study design, analysis, or manuscript writing. The content is solely the responsibility of the authors and does not necessarily represent the official views of any funding agencies.

Footnotes

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Conflicts of Interest

No authors have any other financial interests which could affect the objectivity of this work.

1

Each item asks for a rating from 0=no confidence to 100=total confidence that the respondent can do specific tasks (e.g., positive symptoms: “ignore voices he/she might hear”; negative symptoms: “maintain interest in his/her job or schoolwork”; social behaviors: “call and ask a friend to go out”).

2

For a discussion of internal consistency measurement using Cronbach’s alpha and MacDonald’s hierarchical omega, see Zinbarg et al (2005).

3

Pairwise associations between self-rated efficacy, caregiver-rated efficacy, and covariates are shown in Table 1 and Figure 2. Relationships are expressed as Pearson correlations (in plain type in Table 1 and outside the dashed line in Figure 2) or robust clustered standardized betas (for relationships between self- and caregiver-rated data; shown in italics in Table 1 and inside the dashed line in Figure 2; see 2.4 Data Analysis above for more details).

4

Interestingly, there were no relationships between overt experiences of discrimination and individuals’ perceived efficacy. This may help to account for the lack of associations between stigmatization and caregiver-rated efficacy. Caregivers may be more aware of overt discrimination experiences and less aware of subtler stigmatization experiences.

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