Self-Advocacy Scale for Patients with Stroke

1. Abstract

In the contemporary landscape of chronic neurological illness management, patient empowerment has surfaced as a cornerstone of secondary prevention and long-term functional recovery. Cerebrovascular accidents (stroke) represent a primary cause of adult morbidity, long-term disability, and mortality worldwide. Following the acute phase of a stroke, patients are tasked with navigating complex interdisciplinary care systems, adopting strict therapeutic regimens, modifying lifestyle risk factors, and managing persistent physical and cognitive impairments. Successfully mastering these demands requires robust self-advocacy—defined as an individual’s active representation of personal interests, proactive acquisition of health-related information, clear articulation of care goals, and shared decision-making with clinical teams. To address the lack of specialized assessment instruments for this demographic, researchers developed the Self-Advocacy Scale for Patients with Stroke.

This psychometric instrument comprises 24 items mapped across five theoretically grounded dimensions: awareness of rights and interests, self-cognition, effective communication, seeking support, and self-decision making. Evaluated on a 5-point Likert scale ranging from 1 (Strongly disagree) to 5 (Strongly agree), the instrument generates a composite score reflecting a patient’s overall self-advocacy capacity. Validation was conducted with 565 stroke survivors across tertiary medical centers in Henan Province, China. Psychometric evaluation demonstrated exceptional internal consistency, with an overall Cronbach’s alpha of 0.936 and dimensional alphas spanning 0.816 to 0.898. Test-retest reliability across a two-week interval was established at 0.885, and split-half reliability reached 0.874. Exploratory factor analysis revealed a five-factor structure accounting for 68.285% of cumulative variance, which was subsequently substantiated by confirmatory factor analysis. Content validity was robust, evidenced by a scale-level content validity index (S-CVI) of 0.967. Consequently, the tool offers clinicians and nursing researchers an empirically sound, culturally sensitive instrument for identifying disempowered patients, customizing rehabilitative nursing pathways, and evaluating targeted interventions aimed at maximizing stroke survivorship.

2. Keywords

Self-advocacy, Stroke, Psychometrics, Health management, Patient empowerment, Scale development, Secondary prevention, Patient-centered care, Rehabilitation nursing, Factor analysis

3. Authors

The Self-Advocacy Scale for Patients with Stroke was designed, validated, and published by an interdisciplinary research team based at Zhengzhou University in Henan, China:

• Zhixin Zhao — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Jing Chen — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Beilei Lin — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Chunhui Zhang — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Shanshan Wang — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Yongxia Mei — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Yunjing Qiu — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Hu Jiang (Corresponding Author) — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China. Email: [email protected].
• Xiaoxuan Wang — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China.
• Zhenxiang Zhang (Corresponding Author) — School of Nursing and Health, Zhengzhou University, Zhengzhou, Henan, China. Email: [email protected].

4. Purpose

Historically, standardized assessment instruments developed to capture patient self-advocacy emerged primarily within the contexts of chronic infectious conditions such as HIV/AIDS, psychiatric diagnoses, and oncology. For instance, classic instruments like the Patient Self-Advocacy Scale developed by Brashers and colleagues, or cancer-specific iterations developed by Hagan and Donovan, were engineered around the distinct trajectories of malignancy and prolonged viral infection. While pioneering, these tools failed to translate effectively into stroke rehabilitation. Stroke survivors encounter unique challenges characterized by sudden-onset neurofunctional impairments, hemiparesis, dysarthria, post-stroke cognitive fatigue, and an urgent necessity for lifelong secondary prevention. Consequently, generic or oncology-specific self-advocacy scales demonstrate insufficient ecological and construct validity when applied to cerebrovascular cohorts.

The primary purpose of the Self-Advocacy Scale for Patients with Stroke is to operationalize, quantify, and track the behavioral, cognitive, and communicative actions stroke survivors deploy to navigate their healthcare journey. Stroke remains a leading contributor to global disability-adjusted life years (DALYs), with secondary stroke prevention heavily reliant on patient self-management—including persistent pharmacotherapy adherence, dietary sodium restriction, blood pressure monitoring, physical therapy participation, and routine clinical follow-up. When patients operate as passive recipients of care, rates of medication discontinuation, care dissatisfaction, and recurrent vascular events rise substantially.

From a clinical perspective, the scale functions as an actionable diagnostic screening mechanism. By administering the tool during acute hospitalization, transitional subacute care, or community rehabilitation, nursing teams can readily identify individuals exhibiting deficient self-advocacy skills. Clinicians can determine whether a patient’s vulnerability stems from a lack of legal and healthcare rights awareness, an inaccurate cognitive appraisal of their physical limitations, reluctance to communicate with physicians, an inability to recruit familial support, or anxiety surrounding medical decision-making. This granular profiling permits the implementation of tailored psychoeducational interventions, communication coaching, and empowerment counseling prior to hospital discharge.

From a scientific standpoint, the instrument establishes an empirical baseline for stroke research. It enables investigators to model self-advocacy as an independent predictor, mediator, or moderator within clinical trials. Researchers can rigorously evaluate whether educational interventions—such as peer-led transitional care, digital health self-management applications, or nurse-driven empowerment protocols—exert a measurable therapeutic effect on patient assertiveness, long-term functional recovery, quality of life, and hospital readmission rates.

5. Psychological Construct

The construct of self-advocacy within this psychometric framework is conceptualized as an integrated, multidimensional competency reflecting a patient’s active agency and proactive engagement across their rehabilitative trajectory. Moving substantially beyond passive health literacy or submissive adherence to clinical instructions, self-advocacy embodies the interpersonal and executive capabilities required to ensure that personal health needs, values, and therapeutic goals are accurately understood and executed within the healthcare continuum. The construct is operationalized through five interrelated domains:

Awareness of Rights and Interests

This dimension represents the internal ethical and legal foundation of patient advocacy. It encompasses a stroke patient’s clear understanding of their fundamental entitlements within the healthcare delivery system. Patients possessing high awareness recognize their right to full diagnostic transparency, informed consent, therapeutic privacy, respectful treatment, and equitable access to rehabilitative services. Rather than viewing clinical encounters as authoritarian interactions where the physician holds unilateral control, patients recognize their legitimate status as equal partners entitled to question medical recommendations, review medical charts, and seek second opinions.

Self-Cognition

Self-cognition constitutes the intrapersonal psychological bedrock of advocacy. It reflects the patient’s realistic appraisal and internalized understanding of their post-stroke health status, bodily limitations, cognitive deficits, and emotional fluctuations. It measures the degree to which an individual comprehends how cerebrovascular damage specifically alters their daily living, recognizes individual recovery milestones, and accurately identifies immediate physiological needs. Without accurate self-cognition, patients risk either underestimating their deficits (leading to safety incidents) or descending into learned helplessness; adequate self-cognition enables individuals to formulate clear, realistic recovery expectations.

Effective Communication

Effective communication bridges intrapersonal awareness and interpersonal interaction. It quantifies the patient’s active capability and interpersonal willingness to express subjective symptoms, subtle physical changes, pain levels, emotional distress, and individual values to interdisciplinary medical teams. For stroke survivors, who frequently experience speech hesitation, dysarthria, or communicative anxiety, this dimension measures the proactive effort to ask clarifying questions regarding therapeutic regimens, verify understanding of complex instructions, and candidly voice personal reservations regarding proposed treatments.

Seeking Support

Recovery following a cerebrovascular event demands long-term interdependence. Seeking support captures the proactive behavioral steps an individual initiates to obtain multidimensional assistance from their broader social, familial, and professional ecosystems. Unlike passive receipt of assistance, this dimension assesses the active solicitation of instrumental help (e.g., transportation, physical therapy assistance), emotional validation (e.g., peer support, counseling), and informational clarification (e.g., social services, community resources). It differentiates patients who isolate themselves from those who actively assemble and maintain a supportive post-stroke recovery network.

Self-Decision Making

The final dimension reflects the executive culmination of self-advocacy. Self-decision making measures the extent to which a stroke survivor actively participates in constructing, reviewing, and adjusting their medical and rehabilitative plans. It captures whether the patient engages in shared decision-making, weighs the benefits and burdens of competing clinical interventions, asserts personal preferences regarding long-term therapy goals, and takes ownership of lifestyle modifications necessary to prevent secondary vascular complications.

6. Theoretical Framework

The development of the Self-Advocacy Scale for Patients with Stroke is anchored in several converged health psychology models and nursing methodologies. Primarily, the conceptual definition was developed using Rodgers’ Evolutionary Concept Analysis, an inductive, dynamic framework designed to clarify ambiguous healthcare concepts. Through continuous literature synthesis, evolutionary concept analysis allows researchers to trace how the definition, antecedents, attributes, and consequences of a concept evolve over time within specific clinical populations. Zhao and colleagues utilized this methodology to distill the specific operational attributes of self-advocacy in chronic disease contexts, refining it from a generic social-rights construct into an individualized clinical competency for stroke recovery.

The scale is further grounded in the Patient-Centered Care Model, which fundamentally shifts healthcare philosophy from disease-centric paternalism to collaborative partnerships. This model posits that high-quality clinical outcomes occur only when the patient’s values, preferences, and social circumstances guide all clinical choices. Self-advocacy represents the behavioral vehicle through which patient-centered care is realized; without the patient’s proactive assertion of their values, the clinical alliance inevitably defaults to passive compliance.

Complementary psychological underpinnings stem from Albert Bandura’s Social Cognitive Theory and the construct of self-efficacy. Bandura demonstrated that an individual’s belief in their ability to execute specific behaviors dictates whether they will initiate action, how much effort they will expend, and how resilient they will remain during adversity. In stroke survivorship, advocacy behaviors—such as challenging a physician’s recommendation or requesting additional occupational therapy—require high domain-specific self-efficacy. Patients must believe that their communicative actions will yield meaningful improvements in their care trajectory.

Finally, elements of the Health Belief Model (HBM) and the Theory of Planned Behavior (TPB) inform the cognitive dimensions of the scale. The HBM posits that individuals take health actions based on their perceived susceptibility, perceived severity of disease, and the balance between perceived benefits and perceived barriers. In the stroke continuum, self-advocacy behaviors emerge when a survivor accurately appraises their risk of recurrent stroke (self-cognition) and perceives that asserting their voice within the clinical environment (perceived benefit) outweighs the psychological friction or embarrassment of speaking up (perceived barrier).

7. Validity

The validity of the Self-Advocacy Scale for Patients with Stroke was established through rigorous, sequential psychometric testing following international measurement standards:

Content and Face Validity

Content validity was evaluated using a two-round Delphi method involving 18 multidisciplinary experts across neurology, rehabilitation medicine, clinical nursing, health psychology, and scale construction. Experts rated each item on clarity, relevance, and operational precision using standard 4-point rating rubrics. The Scale-Level Content Validity Index (S-CVI) reached an exceptional 0.967. The Item-Level Content Validity Indices (I-CVI) ranged from 0.833 to 1.000, easily exceeding the conventional academic threshold of 0.78 for established consensus. Face validity was confirmed through cognitive debriefing and a preliminary pilot survey administered to 20 stroke survivors, verifying that all items were comprehensible, unambiguous, and culturally appropriate.

Construct and Structural Validity

Construct validity was demonstrated through exploratory and confirmatory factor analyses. The data set comprising 565 stroke patients demonstrated strong sampling adequacy, confirming that the hypothesized latent structure was statistically supported. Structural equation modeling confirmed that the 24 items mapped cleanly onto their respective latent dimensions without significant cross-loadings or structural distortion. Model fit indices met stringent psychometric criteria, demonstrating that the five-factor model accurately reflects empirical patient responses.

Convergent and Discriminant Validity

To evaluate convergent validity, the researchers examined the average variance extracted (AVE) and composite reliability (CR) for each latent dimension. Following the standard criteria established by Fornell and Larcker (1981), composite reliability values across all five subscales surpassed the required benchmark of 0.70, while AVE estimates demonstrated that the latent factors accounted for a significant portion of the variance in their underlying indicator items. Discriminant validity was substantiated by showing that the square root of the AVE for each dimension was greater than the inter-construct correlations between that dimension and any other factor, proving that while awareness, communication, support-seeking, cognition, and decision-making are correlated aspects of self-advocacy, they represent distinct, non-redundant psychological traits.

8. Reliability

Reliability analysis evaluated the scale’s internal consistency, split-half consistency, and temporal stability across clinical environments:

Internal Consistency

The total scale demonstrated high internal consistency, yielding an overall Cronbach’s alpha of 0.936. At the dimensional level, alpha coefficients were robust across all five subscales:

• Awareness of rights and interests: α = 0.816 – 0.898 range across validation subsamples
• Self-cognition: α > 0.80
• Effective communication: α > 0.85
• Seeking support: α > 0.80
• Self-decision making: α > 0.85

Every individual subscale surpassed the established 0.80 standard required for reliable clinical assessment tools, confirming that the items within each domain are coherent and measure common psychological concepts without extraneous measurement noise.

Split-Half Reliability

The split-half reliability coefficient, calculated using the Spearman-Brown formula to evaluate the equivalence between two halves of the test, yielded a value of 0.874. This confirms that the instrument possesses high internal equivalence across its total item pool.

Test-Retest Temporal Stability

To evaluate the stability of the tool over time, a subsample of 30 clinically stable stroke survivors completed the scale a second time following a two-week interval. The overall test-retest reliability coefficient was 0.885, with dimensional stability scores spanning from 0.755 to 0.853. These coefficients confirm that the instrument is resistant to random daily fluctuation, providing the stability necessary for longitudinal studies tracking patient recovery trajectories.

9. Factor Analysis

The structural dimensionality of the 24-item tool was evaluated using both exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) across stratified participant samples:

Exploratory Factor Analysis (EFA)

Prior to factor extraction, data suitability was examined. The Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy and Bartlett’s Test of Sphericity confirmed strong factorability. Principal component extraction utilizing maximum variance (orthogonal varimax) rotation was conducted across two iterative rounds. A stable five-factor structure emerged, accounting for a cumulative explained variance of 68.285%. All 24 retained items exhibited substantial factor loadings, each exceeding the 0.40 cutoff criterion (with individual loadings ranging between 0.512 and 0.841) onto their intended theoretical factor, displaying negligible cross-loadings onto non-target dimensions.

Confirmatory Factor Analysis (CFA)

To cross-validate the empirical structure identified by EFA, confirmatory factor analysis was conducted using maximum likelihood estimation. The structural equation model specified five correlated first-order latent variables. The goodness-of-fit evaluation indicated excellent alignment between the theoretical five-dimensional model and the empirical covariance matrix:

• Chi-Square to Degrees of Freedom Ratio (χ²/df): Within optimal recommended thresholds (< 3.0)
• Root Mean Square Error of Approximation (RMSEA): < 0.06, indicating minimal approximation error
• Comparative Fit Index (CFI): > 0.90, confirming strong structural fit
• Tucker-Lewis Index (TLI): > 0.90
• Standardized Root Mean Square Residual (SRMR): < 0.05

The statistical congruence between the conceptual framework and the empirical modeling demonstrates that self-advocacy in stroke populations is accurately represented by this five-dimensional configuration.

10. Instrument / Measurement Tool

• Test Type: Psychometric self-report questionnaire / Patient-Reported Outcome Measure (PROM); researcher-administered assistance permitted for survivors with physical handwriting or visual limitations.
• Target Population: Adult stroke survivors (ischemic or hemorrhagic stroke), clinically stable, undergoing acute, subacute, or community rehabilitation.
• Number of Items: 24 items.
• Item Structure: Five multidimensional subscales:
  • Awareness of rights and interests
  • Self-cognition
  • Effective communication
  • Seeking support
  • Self-decision making
• Response Scale: 5-point Likert scale (1 = Strongly disagree, 2 = Disagree, 3 = Neutral / Undecided, 4 = Agree, 5 = Strongly agree).
• Scoring System: Items are scored linearly from 1 to 5. Subscale scores are obtained by summing item scores within each corresponding dimension. The overall self-advocacy score is derived by summing all 24 items, yielding a possible score range between 24 and 120. Higher scores reflect greater self-advocacy capacity and empowerment.
• Estimated Administration Time: Approximately 10 to 12 minutes (average observed completion time: 11 minutes).
• Original Language: Chinese (Mandarin).

11. Permissions & Fee and Test Year

The Self-Advocacy Scale for Patients with Stroke was developed and published in 2025 in Scientific Reports by the research team led by Zhixin Zhao, Zhenxiang Zhang, Hu Jiang, and colleagues at Zhengzhou University. The validation study was conducted across clinical neurology departments between August 2024 and November 2024.

The published article describing the scale’s psychometric properties is available under an Open Access Creative Commons Attribution 4.0 International License (CC BY 4.0). However, the specific item battery remains copyrighted by the authors and their institution to preserve psychometric integrity and ensure standardized clinical administration. Clinicians, hospital networks, and researchers wishing to utilize, translate, or adapt the complete 24-item Chinese scale or its linguistic translations for non-commercial academic research or clinical quality improvement must contact the corresponding authors to secure formal permission and obtain the official testing manual:

• Prof. Zhenxiang Zhang: [email protected]
• Dr. Hu Jiang: [email protected]

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13. Items of the Scale