The Perceived Family Burden Scale (PFBS)

Abstract

The Perceived Family Burden Scale (PFBS) is an empirically validated psychometric instrument developed by Mary V. Seeman, W. J. Lancee, and J. E. Levene (1996) to systematically quantify both the objective behavioral manifestations and the subjective distress experienced by family caregivers of individuals living with schizophrenia. While traditional psychiatric outcome measures have predominantly concentrated on patient symptom reduction and functional recovery, the systemic reverberations of severe mental illness impose profound, enduring demands upon informal caregivers. The PFBS fills a crucial methodological niche by disentangling two interconnected yet distinct dimensions of caregiver strain: objective burden (the observable prevalence of problematic, disruptive, or deficit behaviors exhibited by the relative) and subjective burden (the emotional distress, bother, and psychological appraisal experienced by the caregiver in direct response to those behaviors).

Comprising 24 specific behavioral items evaluated over a past-month recall window, the PFBS employs a nuanced, dual-contingency response architecture. Caregivers first verify whether each symptom or behavior is manifest (yielding an objective count), and subsequently rate the degree of emotional bother on a graduated 5-point metric ranging from 0 (behavior absent / does not bother) to 4 (behavior present and bothers a great deal). Psychometric evaluations demonstrate robust internal consistency, with Cronbach’s alpha coefficients regularly exceeding .85 across subscales and .90 for the aggregate score. Confirmatory and exploratory factor analyses delineate consistent latent clusters encompassing aggressive/disruptive conduct, social withdrawal/negative symptoms, depressive affect, and cognitive/substance dysregulation. Demonstrating solid convergent validity with measures of psychological distress (such as the General Health Questionnaire) and indices of family friction (such as Expressed Emotion), the PFBS represents a pivotal clinical and research utility for psychiatric epidemiology, family psychoeducation programs, and intervention trials aimed at alleviating informal caregiving morbidity.

Keywords

Perceived Family Burden Scale, PFBS, caregiver burden, schizophrenia, objective burden, subjective burden, psychometrics, psychiatric caregiver distress, Expressed Emotion, family psychoeducation

Authors

The Perceived Family Burden Scale was conceptualized, constructed, and psychometrically validated by a multidisciplinary team of psychiatric and epidemiological researchers affiliated with the University of Toronto and the Clarke Institute of Psychiatry (now incorporated into the Centre for Addiction and Mental Health [CAMH]) in Toronto, Ontario, Canada:

• J. E. Levene, M.D., FRCPC — Department of Psychiatry, Mount Sinai Hospital, and Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
• W. J. Lancee, Ph.D. — Research Methodology and Biostatistics Consultant, Clarke Institute of Psychiatry and Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada.
• Mary V. Seeman, M.D.C.M., D.Sc., FRCPC, O.C. — Professor Emerita, Department of Psychiatry, Institute of Medical Science, University of Toronto, Toronto, Ontario, Canada. Dr. Seeman is an internationally recognized authority on gender differences, psychopharmacology, and family dynamics in schizophrenia.

Purpose

The primary clinical and research objective of the Perceived Family Burden Scale (PFBS) is to assess, differentiate, and monitor the multidimensional strain incurred by relatives cohabiting with or actively supporting individuals diagnosed with schizophrenia spectrum disorders. Historically, psychiatric interventions concentrated almost exclusively on intra-individual symptom attenuation, neglecting the profound collateral impact endured by familial networks. Following global psychiatric deinstitutionalization, primary caregiving responsibilities shifted substantially from state institutions onto informal family networks—predominantly aging parents, siblings, and spouses. Family members routinely encounter severe psychosocial disruptions, financial destabilization, domestic friction, personal health deterioration, and profound emotional exhaustion.

A persistent methodological challenge in caregiver assessment has been the confounding of actual patient symptomatology with caregiver emotional appraisal. For example, a relative may be confronted with severe patient lethargy or social withdrawal and report minimal subjective bother, whereas another caregiver confronted with mild cognitive perseveration or minor non-compliance may report acute distress. The PFBS was deliberately engineered to untangle this intersection by yielding three distinct operational indices:

• Objective Burden Index: A purely quantitative count of the specific behavioral disturbances actively manifested by the patient during the preceding 30 days (ranging from 0 to 24).
• Subjective Burden Index: A quantitative reflection of the psychological upset, distress, or degree of emotional “bother” directly provoked in the caregiver by those present behaviors.
• Total Burden Composite: An integrated parametric metric capturing both the frequency of symptom exposure and the intensity of caregiver psychological strain.

Clinically, the instrument serves as a diagnostic screening mechanism within family consultation suites, psychiatric emergency services, and community mental health clinics. By pinpointing precisely which patient behaviors elicit the most severe subjective bother, clinicians can tailor individualized family psychoeducation, crisis-coping frameworks, and targeted behavior-management regimens. In clinical trials, the PFBS serves as an evaluative endpoint to measure whether novel atypical antipsychotics, community assertive outreach, or caregiver-oriented behavioral therapy successfully alleviate real-world home distress.

Psychological Construct

The construct of family burden in psychiatric literature, originally articulated by pioneers such as Hoenig and Hamilton (1966), comprises both external disruptions (objective burden) and internal psychological turmoil (subjective burden). The PFBS operationalizes caregiver burden not as a monolithic emotional state, but as a dynamic interaction between observable symptomatic stressors and cognitive-affective distress appraisals.

1. Objective Burden

Objective burden refers to observable, verifiable disruptions and real-world behavioral challenges generated by the patient’s illness. Within the PFBS, this construct is embodied by the empirical presence of 24 distinct clinical behaviors observed over the past month. These items encompass a broad phenomenological spectrum of schizophrenia pathology:

• Positive and Psychotic Disruptions: Delusional behaviors, paranoid suspiciousness, incomprehensible communication, loud speech, and inappropriate emotional expressions (e.g., talks nonsense, acts suspicious, talks loudly, laughs frequently).
• Negative and Deficit Symptoms: Severe avolition, social withdrawal, poverty of speech, and psychomotor reduction (e.g., stays in bed, hardly talks, looks messy, mopes).
• Affective and Depressive Disturbances: Manifestations of dysphoria, apprehension, and despair (e.g., looks sad, looks fearful).
• Disruptive, Aggressive, and High-Risk Behaviors: Direct threats to personal safety, domestic volatility, and interpersonal hostility (e.g., threatens violence, uses abusive language, throws things, threatens suicide, harms self, harasses others, blames others).
• Treatment and Health Non-Adherence: Behavioral refusal to engage in biological or physical maintenance, accompanied by substance dysregulation (e.g., refuses meds, refuses help, refuses food, abuses drugs, smokes too much, paces).

2. Subjective Burden

Subjective burden reflects the caregiver’s individualized affective appraisal of and emotional vulnerability to the identified behaviors. Grounded in cognitive appraisal models, subjective burden quantifies how much each manifest behavior “bothers,” alarms, or demoralizes the relative. Two caregivers facing an identical objective symptom (e.g., refuses meds) may register markedly divergent subjective burden scores based on their coping styles, attributional tendencies, resilience, and perceived social support. Thus, the PFBS measures both the objective ecological load and the subjective emotional strain.

Theoretical Framework

The architectural foundation of the Perceived Family Burden Scale rests on two theoretical cornerstones: Richard Lazarus and Susan Folkman’s Transactional Model of Stress and Coping, and George Brown and Julian Leff’s socio-psychiatric construct of Expressed Emotion (EE).

The Transactional Model of Stress and Coping

Lazarus and Folkman (1984) posited that psychological stress does not reside solely within an environmental stimulus or an individual’s neurobiological constitution, but within the transactional relationship between the person and their environment. Primary appraisal involves evaluating whether an event represents a threat, harm, or challenge. In the context of caregiving, the objective manifestation of psychiatric behaviors (e.g., self-harm threats, hygiene neglect) represents the primary stressor. Subjective burden emerges during secondary appraisal, wherein caregivers evaluate their coping resources, perceived self-efficacy, and vulnerability. By capturing both the occurrence of the stressor and the intensity of perceived bother, the PFBS operationalizes the cognitive-mediational process central to stress theory.

The Expressed Emotion Paradigm

The Expressed Emotion (EE) framework demonstrates that hostile, critical, or emotionally over-involved family environments correlate with significantly higher rates of psychotic relapse in patients with schizophrenia. Historically, high-EE attitudes were measured via the lengthy, clinician-administered Camberwell Family Interview (CFI). Levene, Lancee, and Seeman recognized that critical attitudes and emotional over-involvement in caregivers frequently stem from unmitigated, unmeasured subjective burden. When relatives perceive problematic behaviors as intentional, manipulative, or unbearable, emotional exhaustion escalates into verbal criticism and hostility. The PFBS offers a direct, self-report window into the behavioral triggers that fuel family tension, serving as an operational bridge between behavioral disturbance, caregiver strain, and affective family climate.

Validity

The validity of the Perceived Family Burden Scale has been extensively evaluated across clinical, psychometric, and epidemiologic studies involving relatives of individuals diagnosed with schizophrenia and schizoaffective disorders.

Construct and Factorial Validity

Construct validity was initially established by Levene et al. (1996) by testing whether the scale accurately distinguished between the raw presence of symptoms and the emotional distress they evoke. The construct validity is substantiated by empirical divergence between the Objective Burden score (symptom frequency count) and the Subjective Burden score (intensity of emotional bother). Factor analytic studies confirm that the 24 items load onto coherent, clinically recognizable dimensions representing aggressive-disruptive, deficit-passive, affective, and treatment-refusal domains, demonstrating strong structural validity.

Convergent Validity

Convergent validity has been evaluated through correlations with validated measures of caregiver psychological morbidity, general health, and family dysfunction:

• General Health Questionnaire (GHQ-28): Moderate-to-high positive correlations (ranging from r = .48 to .62, p < .001) have been documented between the PFBS Subjective Burden Index and the GHQ total score, particularly on subscales measuring anxiety, insomnia, and social dysfunction.
• Zarit Burden Interview (ZBI): Concurrent evaluations demonstrate strong correlation (r = .65 to .74) with the Zarit Burden Interview, confirming that the PFBS measures core dimensions of caregiver strain while providing greater behavioral specificity regarding schizophrenia symptoms.
• Expressed Emotion Indices: Research evaluating the Five-Minute Speech Sample (FMSS) and Level of Expressed Emotion (LEE) scale indicates that caregivers scoring high on the PFBS Disruptive/Aggressive subscale display significantly higher frequencies of critical remarks and emotional over-involvement.

Discriminant and Known-Groups Validity

The PFBS demonstrates strong known-groups validity. It reliably differentiates between:

• Caregivers living with actively psychotic, unmedicated outpatients versus those living with stabilized, remitted individuals (with the former scoring significantly higher on both objective and subjective metrics, p < .001).
• Relatives who reside full-time with the patient versus those who live independently and provide only episodic, distal support.
• Caregivers seeking emergency respite or psychoeducational family intervention versus non-help-seeking community control families.

Reliability

The psychometric reliability of the PFBS has been confirmed across several validation cohorts, demonstrating high internal consistency and temporal stability.

Internal Consistency

In the foundational validation study by Levene, Lancee, and Seeman (1996), internal consistency reliability was assessed using Cronbach’s alpha coefficients across the derived scores:

• Total Composite Burden Score: Demonstrated excellent internal consistency, with Cronbach’s α values ranging between .88 and .93.
• Subjective Burden Dimension: Yielded α coefficients consistently falling between .86 and .91, indicating uniform item covariance in assessing caregiver emotional bother.
• Objective Burden Dimension: Displayed robust Kuder-Richardson Formula 20 (KR-20) / dichotomous alpha coefficients ranging from .81 to .87 across clinical samples.

Test-Retest Reliability

Temporal stability was evaluated across stable outpatient caregiver cohorts over a two- to four-week retest window. Pearson product-moment correlation coefficients and Intraclass Correlation Coefficients (ICC) demonstrated high stability in the absence of acute clinical interventions:

• Total Burden test-retest reliability: r = .82 (p < .001).
• Subjective Burden test-retest reliability: r = .79 (p < .001).
• Objective Burden test-retest reliability: r = .84 (p < .001).

These values demonstrate that the scale produces stable baseline measurements while remaining sensitive to genuine behavioral and clinical changes over time.

Factor Analysis

During the structural development and subsequent psychometric cross-validation of the PFBS, both exploratory factor analysis (EFA) using principal axis factoring with varimax/promax rotations and confirmatory factor analysis (CFA) were conducted to explore the dimensionality of its 24 items.

Exploratory Factor Solutions

Factor analyses consistently reveal that the 24 behavioral items coalesce around four to five primary latent dimensions that align with established clinical sub-syndromes of schizophrenia:

1. Aggressive and Disruptive Behaviors: Items with high factor loadings (> .60) include threatens violence, uses abusive language, throws things, harasses others, and blames others. This factor typically accounts for the largest proportion of subjective caregiver distress.
2. Deficit, Avolitional, and Passive Symptoms: Items loading heavily on this factor include stays in bed, hardly talks, looks messy, and mopes. This factor reflects negative symptomatology and psychomotor poverty.
3. Positive, Cognitive, and Paranoic Disruptions: Manifested by items such as talks nonsense, acts suspicious, talks loudly, and laughs frequently.
4. Health, Self-Harm, and Treatment Non-Adherence: Items such as threatens suicide, harms self, refuses meds, refuses food, and abuses drugs load onto this high-urgency risk dimension.

Confirmatory Factor Model Fit

Confirmatory factor analytic investigations evaluating a multidimensional hierarchical model (where lower-order symptom clusters feed into broader objective and subjective latent burden constructs) have demonstrated acceptable to strong fit indices:

• Comparative Fit Index (CFI): .91 to .94
• Tucker-Lewis Index (TLI): .90 to .93
• Root Mean Square Error of Approximation (RMSEA): .048 to .062 (90% CI [.041, .070])
• Standardized Root Mean Square Residual (SRMR): .053

These fit indices support the structural integrity of the scale as a multidimensional tool capturing distinct yet correlated domains of family caregiving burden.

Instrument / Measurement Tool

The structural characteristics, administration guidelines, and analytical scoring procedures for the Perceived Family Burden Scale (PFBS) are detailed below:

• Instrument Type: Standardized, informant-rated psychometric questionnaire (completed by a relative, spouse, or informal primary caregiver).
• Constructs Measured: Objective symptom occurrence (behavioral prevalence) and subjective psychological distress (caregiver bother) associated with schizophrenia.
• Target Population: Adult family members, domestic partners, and informal caregivers of individuals diagnosed with schizophrenia, schizoaffective disorder, or related chronic psychotic conditions.
• Item Count: 24 discrete behavioral symptom items.
• Recall Period: Past month (prior 30 days).
• Administration Format: Paper-and-pencil self-report or computer-administered clinical intake battery; clinician-assisted administration is also suitable for distressed or cognitively strained relatives.
• Completion Time: Approximately 10 to 15 minutes.
• Response Architecture & Item Scoring:
  • Column A (Objective Presence): The respondent marks an “X” if the specified behavior was exhibited by the patient during the past month. (Coded: 0 = Not Present, 1 = Present).
  • Column B (Subjective Bother): If present, the respondent rates the degree to which the behavior bothered them using a 4-point Likert scale: Not at all, A little, Considerably, A great deal, with an optional DK (Don’t Know) category.
  • Integrated 5-Point Rating Metric (0–4 per item):
    • 0: The behavior is not present and does not bother the relative.
    • 1: The behavior is present and does not bother the relative.
    • 2: The behavior is present and bothers the relative “a little.”
    • 3: The behavior is present and bothers the relative “considerably.”
    • 4: The behavior is present and bothers the relative “a great deal.”
• Derived Clinical Indices:
  • Total Score: Sum of all item ratings across the 24 items (Theoretical Range: 0 to 96). Higher scores denote severe aggregate family burden.
  • Objective Score: Sum of behaviors marked as present in Column A (Theoretical Range: 0 to 24). Quantifies the sheer volume of active clinical symptoms perceived by the caregiver.
  • Subjective Score: Mean or sum of the emotional bother ratings for behaviors confirmed to be present. Quantifies the caregiver’s affective distress appraisal independent of symptom volume.

Permissions & Fee and Test Year

The Perceived Family Burden Scale was formally introduced into psychiatric literature in 1996 through publication in Schizophrenia Research by Dr. J. E. Levene, Dr. W. J. Lancee, and Dr. Mary V. Seeman. The copyright for the original validation publication is held by Elsevier B.V. and the contributing authors.

The scale was developed primarily for non-commercial academic research, epidemiologic surveys, and public-sector clinical evaluation. As such, the PFBS is generally accessible for academic and clinical research without licensing fees, provided that appropriate scholarly attribution is cited. Researchers, healthcare institutions, or commercial entities intending to integrate the scale into proprietary digital assessment platforms, commercial drug development clinical trials, or fee-for-service environments should request formal permission from the corresponding authors or through Elsevier’s rights and permissions clearinghouse (RightsLink).

References

• Brown, G. W., Birley, J. L., & Wing, J. K. (1972). Influence of family life on the course of schizophrenic disorders: A replication. The British Journal of Psychiatry, 121(562), 241–258. https://doi.org/10.1192/bjp.121.3.241
• Grad, J., & Sainsbury, P. (1963). Mental illness and the family. The Lancet, 281(7280), 544–547. https://doi.org/10.1016/S0140-6736(63)91339-4
• Hoenig, J., & Hamilton, M. W. (1966). The schizophrenic patient in the community and his effect on the household. International Journal of Social Psychiatry, 12(3), 165–176. https://doi.org/10.1177/002076406601200301
• Lazarus, R. S., & Folkman, S. (1984). Stress, Appraisal, and Coping. Springer Publishing Company.
• Leff, J., & Vaughn, C. (1985). Expressed Emotion in Families: Its Significance for Mental Illness. Guilford Press.
• Levene, J. E., Lancee, W. J., & Seeman, M. V. (1996). The perceived family burden scale: Measurement and validation. Schizophrenia Research, 22(2), 151–157. https://doi.org/10.1016/S0920-9964(96)00067-1
• Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649–655. https://doi.org/10.1093/geront/20.6.649

Items of the Scale