Abstract
Background
Stroke, a leading cause of disability, significantly burdens caregivers. Increased patient dependency correlates with higher caregiver burden, potentially exacerbated by guilt. We examined the interplay between patient self-care, caregiver guilt, and burden to guide intervention strategies.
Objective
To investigate the mediating role of caregiver guilt in the relationship between activities of daily living and caregiver burden in stroke patients.
Design
Cross-sectional descriptive study.
Methods
From July 2024 to February 2025, 312 pairs of stroke patients and caregivers were recruited from three medical centers in the Wuling Mountain region in China. Data collection utilized questionnaires, including the Barthel Index for Activities of Daily Living (Chinese adaptation), the Caregiver Guilt Scale (Chinese version), and the Zarit Caregiver Burden Scale.
Results
Activities of daily living scores negatively correlated with caregiver guilt and burden (p<0.05). Caregiver guilt positively correlated with burden and partially mediated the relationship between the ability to perform activities of daily living and caregiver burden, with an effect size of 62.56%.
Conclusions
The patient's ability to perform activities of daily living was associated with caregiver burden through caregiver guilt. Interventions might consider targeting the caregiver's guilt while promoting the patient's activities of daily living recovery. A dual "patient-caregiver" evaluation approach may mitigate guilt and reduce caregiver burden.
Keywords: Stroke, Caregiver guilt, Burden, Intermediary effect, Home nursing
What is already known.
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Caregivers of stroke patients with better ability to perform activities of daily living usually face a lesser burden.
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Caregivers' guilt is an important factor in the psychological state of caregivers.
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What this paper adds.
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Stroke patients' total Activities of Daily Living scores were negatively correlated with total caregiver guilt scores and primary caregiver burden (p<0.05).
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Caregiver guilt was positively associated with primary caregiver burden and partially mediated the effect between ability to perform activities of daily living and primary caregiver burden in stroke patients.
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1. Introduction
Stroke is a common neurological condition marked by elevated incidence, death, disability, and recurrence rates (Jin et al., 2022).The aging population is contributing to a rising prevalence of stroke among the elderly, profoundly affecting families and society (Ma et al., 2022). According to the Global burden of diseases and injuries in countries and territories (2019), Gallego-Alberto et al. (2022) and Yao et al. (2023), the crude rates of incidence and prevalence due to stroke in China increased by 86% and 106%, respectively, in 2019 compared to 1990. Yao et al. (2023) predicted that the incidence and prevalence of stroke in China will increase by 56% and 119% in 2050 compared with 2019, respectively, corresponding to an additional 2 million and 34 million cases.
2. Background
Caregiver burden refers to the negative consequences caregivers face stemming from the physical, emotional, financial, and social demands of caring for an ailing family member (González-Fraile et al., 2021). Researchers have demonstrated that caregiver burden is significantly associated with the patient's kind of illness, duration of the disease, and the psychological condition of the caregiver (Jaracz et al., 2024). Caregivers of stroke patients frequently have heightened burdens due to the possibility of coping with physical and cognitive deficits in patients, which impact caregivers' quality of life and emotional well-being (Zhao et al., 2022). Patients' activities of daily living are essential indications for evaluating their self-care capabilities. Researchers have found that stroke patients with elevated Activities of Daily Living scores generally have caregivers who endure a reduced burden (Xu et al., 2024). Researchers have shown that individuals who experienced prolonged feelings of guilt were less likely to lead healthy lives (Cerna et al., 2022, Greenland et al., 2017). Stroke caregivers often feel guilty for not being able to fully meet the patient's needs, for worrying about inadequate care, or for experiencing negative emotions (Mori et al., 2024). Guilt is a negative psychological feeling in which caregivers feel or think that they are responsible for not meeting their obligations or expectations during the caregiving process (Spillers et al., 2008). Researchers have concluded that caregiver guilt increases their risk of depression and physical, psychological, and economic burdens; causes caregiver anxiety and social isolation; and can lead to a decrease in the quality of care for the patient (Corey and McCurry, 2018, Corey et al., 2020). (Gallego-Alberto et al., 2022) and (Springate and Tremont, 2014) demonstrated a significant link between caregiver guilt and caregiving strain. Many of the current researchers on stroke caregivers focus on their burden. Previous researchers have been constrained in their examination of the correlation among caregiver guilt, the daily living activities among stroke patients, and the hardship endured by primary caregivers. The three core variables of the stress and coping model constructed by American psychologist RS Lazarus are the stressor, mediator, and stress response (Folkman et al., 1986). Therefore, we adopted a confirmatory research design. Unlike exploratory research, the purpose of this study was to verify rather than generate hypotheses. Based on the stress and coping model, we intended to examine the interconnections among these variables in greater depth, using the level of self-care ability of stroke patients as the stressor, caregiver guilt as the mediator, and caregiver burden as the stress response. We examined the relationships and linkages between caregiver guilt, patient activities of daily living, and caregiver burden for those caring for stroke patients. The aim was to investigate the mediating role of caregiver guilt in the relationship between activities of daily living and caregiver burden in stroke patients and to provide information for a longitudinal study.
3. Subjects and methods
3.1. Study subjects
Between July 2024 and February 2025, a convenience sampling method was utilized to choose patients and their primary caregivers from the neurology and rehabilitation departments of three Grade A tertiary hospitals in the Wuling Mountain region of Hunan Province. Grade A tertiary hospitals are medical institutions classified by China's Measures for the Classification and Management of Hospitals, which is the highest level in the classification of hospitals in mainland China. During hospitalization or inpatient rehabilitation, the researchers and clinicians communicated with stroke patients and their caregivers and informed them in writing about the purpose of the study and related matters, and they were included in the study only if the patients and their caregivers gave informed consent to participate voluntarily and completed an informed consent form.
Inclusion criteria were: ① Patients: Aged ≥18 years; diagnosed with stroke using cranial computed tomography or magnetic resonance imaging (Garner et al., 1988, Smith et al., 2015), in a stable phase of the condition; Barthel Index score <100 (showing varying degrees of self-care functional impairment); provided informed consent; and freely participated in this study. ② Caregivers: Aged ≥18 years; primary caregivers of stroke patients (spending the most time daily caring for the patient, with a caregiving duration of at least 3 months); not employed as caregivers; able to communicate normally; having the capacity to read or comprehend the survey content; able to provide informed consent and participate voluntarily. Sample size was calculated using G*Power version 3.1, and since there were no studies in the literature that applied all three scales simultaneously, the medium effect size was considered to be 0.15. Assuming an alpha level of 0.05, an effect size of 0.15, and a power of 0.95, a minimum of 199 individual participants would be required. Considering missing samples or invalid samples, an additional 10-20% was added. Finally, 312 pairs of stroke patients and their primary caregivers who met the inclusion criteria were included. The Biomedical Ethics Committee of Jishou University reviewed the study, with approval number JSDX-2025-0034. All participants provided informed consent and willingly engaged in the study.
3.2. Survey instruments
3.2.1. General information questionnaire
We constructed a comprehensive information questionnaire for individuals who had experienced a stroke and their caretakers. The patient demographic questionnaire encompassed age, sex, educational attainment, marital status, type of medical insurance, duration of illness, quality of sleep, utilization of antidepressant or antianxiety drugs, presence of disability, and concomitant conditions. The caregiver general information questionnaire encompassed age, sex, marital status, residence, employment status, educational attainment, total caregiving duration, average daily caregiving hours, number of individuals involved in care, health condition, relationship with the patient, monthly household revenue per head, and life satisfaction.
3.2.2. Barthel index for activities of daily living scale (Chinese adaptation)
We employed the Barthel Index (Bouwstra et al., 2019) to evaluate the activities of daily living in stroke patients. This instrument consists of 10 components: feeding, bathing, grooming, clothing, managing bowels, bladder management, bathroom use, transitions (getting in and out of bed and transferring to a chair), getting around, and climbing staircases. Each item is evaluated according to the degree of assistance the subject needs, utilizing four scoring tiers: 0, 5, 10, and 15 marks. The cumulative score is 100 points, with 100 signifying complete independence, necessitating no assistance; 61-99 indicating mild dependence, requiring minimal assistance; 41-60 denoting moderate dependence, necessitating considerable assistance; and 40 or below reflecting severe dependence, requiring total assistance during activities of daily living. The evaluation instrument exhibits strong reliability and validity, featuring an inter-rater reliability of 0.91 and an item reliability of 0.99 (Ding et al., 2019). The Cronbach's alpha value for the measure in the present investigation was 0.914.
3.2.3. Zarit burden interview
The caregiver burden measure developed by Zarit et al. (1980) consists of two main dimensions: personal burden and responsibility burden. The personal burden dimension encompasses 12 items, while the responsibility burden dimension includes six items. Furthermore, the scale incorporates four additional items, with one item assessing the caregiver's subjective perception of the overall care burden. The entire scale consists of 22 items, each employing a 5-point Likert scale, ranging from 0 (never) to 4 (always), with a total score ranging from 0 (no burden) to 88 (maximum burden). The total Cronbach's α coefficient for the Chinese version of the Zarit Burden Interview was 0.87, indicating high reliability, and it has been widely applied in numerous studies. In this study, the severity of care burden was categorized into four levels: no burden (<20 points), mild burden (20-39 points), moderate burden (40-59 points), and severe burden (≥60 points) (Kumamoto et al., 2006). The Cronbach's alpha value coefficient for the scale in this study was 0.941.
3.2.4. The Chinese version of the caregiver guilt questionnaire
Losada et al. (2010) developed the Spanish and English versions of the Caregiver Guilt Questionnaire via literature analysis and expert panel talks. Wang et al. (2023) modified the Chinese iteration of the scale, comprising 22 components. Each item is evaluated on a 5-point Likert scale, from 0 (never) to 4 (always/almost always). The overall score is determined by aggregating the scores of all things, with one item scored in reverse. A higher cumulative score signifies an increased level of caregiver guilt. The Caregiver Guilt Questionnaire evaluates caregiver guilt across five dimensions: guilt about actions taken against the care recipient (six items), guilt on the neglect of other family members (two items), guilt associated with negative sentiments toward others (four items), guilt related to inadequate coping with caring issues (six items), and guilt concerning self-care practices (four items). Wang et al. (2023) reported the following statistics. The overall Cronbach's α value for the whole scale was 0.953, whereas the corresponding values for each dimension varied between 0.799 and 0.941. The entire scale exhibited a split-half reliability of 0.881, whereas the split-half reliability for each dimension varied between 0.799 and 0.936. The content validity index of the scale was 0.91, with all item content validity exceeding 0.80, indicating strong reliability and validity. The Cronbach's alpha value coefficient of the scale in this study was 0.928.
3.3. Data collection and quality control methods
The researchers secured consent from the head nurse of the department housing the participants and disseminated questionnaires via the head nurses or designated individuals in the participants' departments. All stroke patients in this study were hospitalised. Prior to disseminating the questionnaires, the researchers apprised the distributors of the study's prerequisites, encompassing the questionnaire's substance, inclusion and exclusion criteria, and survey duration, underscoring the necessity for correctness and dependability in the data collected. Participants were assured that their information would be totally confidential and utilized solely for research reasons. The questionnaire was entered using Questionnaire Star software, which generated a QR code. Participants anonymously completed the questionnaire by scanning the code via WeChat. Instructions were delineated on the first screen and inside each area of the questionnaire. The duration of completion was at least 5 minutes. The gathered questionnaires underwent meticulous examination by two individuals, resulting in the exclusion of those containing illogical, evidently erroneous, or programmed responses. A total of 330 questionnaires were disseminated in this survey, resulting in the retrieval of 312 valid responses, yielding an effective recovery rate of 94.55%.
3.4. Statistical methods
The data analysis was conducted using IBM SPSS Software, version 26.0 and Model 4 in the Process plug-in. Count data were described by frequency and percentage. After a parametric test, the data of this study showed normal distribution, and the measurement information was described by mean and standard deviation (SD). Independent sample test and one-way analysis of variance (ANOVA) were used to evaluate the socio-demographic variables of the participants. Pearson correlation analysis was employed to examine the relationship between stroke caregivers' guilt and patients' Activities of Daily Living score, as well as caregiver burden. Caregiver guilt, caregiver burden, and patient Activities of Daily Living level were continuous variables, Model 4 (Hayes and Rockwood, 2020) in the Process plug-in was used to analyse the mediating effect of caregiver’s guilt, using the dependent variable (y) as caregiver burden, the independent variable (x) as the patient’s Activities of Daily Living score, and the mediating variable (m) as caregiver’s guilt. Bootstrapping was used with a sample size of 5000, and indirect effects were significant with a 95% confidence interval (ci) that did not include 0. All analysis p values were considered significant if < 0.05.
4. Results
4.1. Demographic information of the study participants
The majority of primary caregivers were middle-aged females, while the majority of patients were older males. See Table 2a, Table 2b for details.
Table 2a.
Univariate analysis of caregivers' socio-demographic variables and burden of care (N=312).
| Item | Cases [n (%) ] | SD | F | p |
|---|---|---|---|---|
| Age | ||||
| 18 to 44 years old | 90 (28.85) | 29.92±15.45 | 4.371 | 0.013a |
| 45 to 59 years old | 139 (44.55) | 30.96±13.76 | ||
| ≥60 years old | 83 (26.60) | 36.11±16.06 | ||
| Sex | ||||
| Male | 147(47.11) | 32.03±14.88 | <0.001 | 0.998 |
| Female | 165(52.88) | 32.03±15.25 | ||
| Marital Status | ||||
| Married | 272 (87.18) | 32.90±15.37 | 7.208 | 0.008 a |
| Unmarried/Divorced/Widowed | 40 (12.82) | 26.12±11.11 | ||
| Residence | ||||
| Rural | 152 (48.72) | 37.13±15.64 | 37.970 | <0.001 b |
| Urban | 160 (51.28) | 27.19±12.74 | ||
| Employment Status | ||||
| Employed | 170(54.49) | 32.21±15.79 | 2.304 | 0.130 |
| Retired/Unemployed | 142(45.51) | 30.62±14.05 | ||
| Educational Attainment | ||||
| Elementary school and below | 32(10.26) | 47.47±15.53 | 21.428 | <0.001 b |
| Middle school | 141(45.19) | 33.53±13.31 | ||
| Technical secondary education | 97(31.09) | 28.37±14.61 | ||
| College and above | 42(13.46) | 23.69±11.60 | ||
| Total Caregiving Time | ||||
| ≤2 years | 167(53.53) | 25.11±12.30 | 45.630 | <0.001 b |
| >2 and ≤5 years | 103(33.01) | 36.55±13.23 | ||
| >5 and ≤10 years | 26(8.33) | 46.73±12.25 | ||
| >10 years | 16(5.13) | 51.31±11.75 | ||
| Average Daily Caregiving Time | ||||
| ≤4 hours | 47(15.06) | 35.00±15.66 | 1.290 | 0.277 |
| >4 and ≤8 hours | 74(23.72) | 32.47±15.74 | ||
| >8 hours | 191(61.22) | 31.13±14.60 | ||
| Number of people jointly involved in care | ||||
| None | 88(28.21) | 32.01±14.14 | 1.221 | 0.302 |
| 1 person | 154(49.36) | 32.86±15.65 | ||
| 2 people | 44(14.10) | 32.30±15.01 | ||
| 3 or more people | 26(8.33) | 26.77±14.26 | ||
| Health Status | ||||
| Healthy | 179(57.37) | 26.56±13.68 | 33.625 | <0.001 b |
| Good | 108(34.62) | 39.25±13.55 | ||
| Poor | 25(8.01) | 40.04±14.26 | ||
| Relationship with Patient | ||||
| Spouse | 114(36.54) | 33.50±14.31 | 5.490 | 0.005 a |
| Children | 151(48.40) | 32.97±15.87 | ||
| Other | 47(15.06) | 25.45±12.43 | ||
| Per Capita Monthly Household Income | ||||
| <500 yuan | 21(6.73) | 50.81±16.79 | 58.837 | <0.001 b |
| 500 to 1000 yuan | 38(12.18) | 45.47±10.63 | ||
| 1000 to 2000 yuan | 75(24.04) | 35.80±12.64 | ||
| 2000 to 3000 yuan | 91(29.17) | 32.95±10.78 | ||
| >3000 yuan | 54(17.31) | 19.41±7.06 | ||
| >5000 yuan | 33(10.58) | 14.18±6.10 | ||
| Satisfaction with Current Life | ||||
| Not satisfied at all | 26(8.33) | 45.77±14.10 | 32.759 | <0.001b |
| Not very satisfied | 117(37.50) | 39.21±12.83 | ||
| Relatively satisfied | 138(44.23) | 26.20±12.31 | ||
| Very satisfied | 18(5.77) | 22.89±14.29 | ||
| Extremely satisfied | 13(4.17) | 14.62±9.51 |
Notes: a, p<0.05; b, p<0.001; SD, standard deviation; n, frequency; %, percentage; N, Number of participants; F, Fisher's F statistic.
Table 2b.
Univariate analysis of patients' socio-demographic variables and burden of care (N=312).
| Item | Cases [n (%) ] | SD | F | p |
|---|---|---|---|---|
| Age | ||||
| 18 to 44 years old | 7(2.24) | 31.14±13.63 | 3.759 | 0.025a |
| 45 to 59 years old | 77 (24.68) | 28.04±12.61 | ||
| ≥60 years old | 228 (73.08) | 33.41±15.65 | ||
| Sex | ||||
| Male | 173 (55.45) | 33.07±14.72 | 1.850 | 0.175 |
| Female | 139 (44.55) | 30.74±15.41 | ||
| Marital Status | ||||
| Married | 252 (80.77) | 32.54±15.30 | 1.470 | 0.226 |
| Unmarried/divorced/widowed | 60 (19.23) | 29.92±13.88 | ||
| Educational Attainment | ||||
| Elementary school and below | 84 (26.92) | 44.32±13.95 | 40.240 | <0.001 b |
| Middle school | 134 (42.95) | 29.52±11.97 | ||
| Technical secondary education | 73 (23.40) | 26.51±13.59 | ||
| College and above | 21 (6.73) | 18.10±10.26 | ||
| Medical Insurance Type | ||||
| Self to paid | 12 (3.85) | 43.83±14.01 | 7.889 | <0.001 b |
| Urban resident's basic medical insurance | 77 (24.68) | 28.22±12.84 | ||
| Urban worker's basic medical insurance | 65 (20.83) | 26.52±16.13 | ||
| New rural cooperative medical scheme | 149 (47.76) | 35.01±14.39 | ||
| Other | 9 (2.88) | 39.33±15.47 | ||
| Disease Duration | ||||
| ≤2 years | 146 (46.79) | 25.03±12.16 | 34.473 | <0.001b |
| >2 and ≤5 years | 99 (31.73) | 34.28±12.44 | ||
| >5 and ≤10 years | 49 (15.71) | 42.24±16.50 | ||
| >10 years | 18 (5.77) | 48.61±13.43 | ||
| Sleep Quality | ||||
| Very high sleep quality | 7 (2.24) | 19.00±11.24 | 27.699 | <0.001b |
| Superior sleep quality | 54 (17.31) | 18.33±9.16 | ||
| Overall sleep quality | 151 (48.40) | 31.86±14.45 | ||
| Suboptimal sleep quality | 75 (24.04) | 40.83±13.23 | ||
| Inferior sleep quality | 25 (8.01) | 39.92±9.80 | ||
| Item | Cases [n (%) ] | SD | F | p |
| 63 (20.19) | 45.68±13.65 | 81.803 | <0.001 b | |
| 249 (79.81) | 28.58±13.35 | |||
| 35 (11.22) | 38.86±14.21 | 8.297 | 0.004 a | |
| 277 (88.78) | 31.17±14.96 | |||
| 290 (92.95) | 32.81±15.06 | 11.260 | <0.001b | |
| 22 (7.05) | 21.82±10.81 |
Notes: a, p<0.05; b, p<0.001; SD, standard deviation; n, frequency; %, percentage; N, Number of participants; F, Fisher's F statistic.
4.2. Scores on the activities of daily living scale, caregiver burden scale, and caregiver guilt scale
Patients all exhibited varying degrees of impairment in activities of daily living abilities, while the majority of carers reported varying levels of burden and feelings of guilt. See Table 1 for details.
Table 1.
ZBI, CGQ, and BI Scores of Stroke Caregivers and Patients (N=312, expressed as mean ± standard deviation).
| Item | Actual score range | Theoretical score range |
|---|---|---|
| ZBI | 32.03±15.05 | 0 to 88 |
| Personal Burden | 16.79±8.09 | 0 to 48 |
| Responsibility Burden | 8.01±4.73 | 0 to 24 |
| BI | 39.54±17.72 | 0 to 100 |
| CGQ | 41.63±15.08 | 0 to 88 |
| Guilt about Doing Things Wrong for the Care Recipient | 11.28±4.45 | 0 to 24 |
| Guilt about Neglecting Other Family Members | 3.93±1.62 | 0 to 8 |
| Guilt about Negative Feelings Toward Others | 6.95±3.07 | 0 to 16 |
| Guilt about Not Coping with Caregiving Challenges | 11.70±4.62 | 0 to 24 |
| Guilt about Self-Care | 7.78±3.31 | 0 to 16 |
Notes: ZBI, Zarit Burden Interview; BI, Barthel Index; CGQ, Caregiver Guilt Questionnaire; N, Number of participants.
4.3. Univariate analysis of caregiver burden in stroke
Univariate analysis of stroke caregiver burden indicated statistically significant differences (all p < 0.05) in total caregiver burden scores among different demographics. The factors encompassed age, marital status, residential location, educational attainment, total caregiving length, health status, monthly household income per capita, and life satisfaction, as outlined in Table 2a. Factors related to the patient, including age, educational attainment, type of health insurance, duration of illness, sleep quality, use of anxiolytic or antidepressant medications, disability status, and presence of comorbidities, exhibited statistically significant effects (all p < 0.05) on overall caregiver burden scores, as presented in Table 2b.
4.4. Examination of the relationship between caregiver guilt and the activities of daily living scores of stroke patients, as well as primary caregiver stress
The Pearson correlation analysis indicated a strong negative link between caregiver burden and the Activities of Daily Living scores of stroke patients. A substantial positive association was identified between caregiver burden and caregiver guilt. A notable negative association was observed between patients' Activities of Daily Living score and caregiver guilt, as presented in Table 3.
Table 3.
Correlation analysis of caregiver guilt with patient Activities of Daily Living and primary caregiver burden (N=312).
| Dimension | ZBI | Personal Burden | Responsibility Burden | BI | CGQ | Guilt about wronging the care recipient | The guilt of neglecting other relatives | Guilt of negative feelings toward others | Guilt of not meeting care challenges | Guilt about self to care |
|---|---|---|---|---|---|---|---|---|---|---|
| ZBI | 1 | |||||||||
| Personal Burden | 0.967 | 1 | ||||||||
| Responsibility Burden | 0.914 | 0.819 | 1 | |||||||
| BI | -0.487c | -0.465 | -0.449 | 1 | ||||||
| CGQ | 0.811c | 0.794 | 0.693 | -0.415 | 1 | |||||
| Guilt about wronging the care recipient | 0.749 | 0.736 | 0.647 | -0.328 | 0.894 | 1 | ||||
| The guilt of neglecting other relatives | 0.656 | 0.632 | 0.576 | -0.405 | 0.788 | 0.684 | 1 | |||
| Guilt of negative feelings toward others | 0.657 | 0.629 | 0.590 | -0.306 | 0.836 | 0.673 | 0.554 | 1 | ||
| Guilt of not meeting care challenges | 0.764 | 0.755 | 0.636 | -0.407 | 0.926 | 0.745 | 0.695 | 0.715 | 1 | |
| Guilt about self to care | 0.695 | 0.685 | 0.572 | -0.403 | 0.906 | 0.732 | 0.702 | 0.712 | 0.820c | 1 |
Notes: c, p<0.01; ZBI, Zarit Burden Interview; BI, Barthel Index; CGQ, Caregiver Guilt Questionnaire; N, Number of participants.
4.5. Examination of the mediating role of carer guilt in the association between activities of daily living score of stroke patients and the stress experienced by primary caregivers
The Process model-based analysis showed that stroke patients' Activities of Daily Living level negatively predicted caregiver burden, with an explanatory power of 23.7% for the effect of patients' Activities of Daily Living scores on caregiver burden and also through the mediating pathway of caregiver guilt. Path analyses revealed that patients' ability to perform activities of daily living significantly negatively predicted caregiver guilt, with an explanatory power of 17.2% for caregiver guilt, whilst caregiver guilt significantly and positively predicted caregiver burden. A significant mediation effect was confirmed by the Bootstrap test, with a mediation effect value of -0.259, accounting for 62.56% of the total effect. It suggests that the mediating role of caregiver guilt between patients' ability to perform daily activities and caregiver burden held true. See Table 4 and Figure 1 for details.
Table 4.
Mediation effect analysis of patient Activities of Daily Living, caregiver guilt, and caregiver burden.
| Effect Relationship | Effect Path | Constant | Effect Value | 95% CI | Effect Proportion |
|---|---|---|---|---|---|
| Total Effect | Patient ADL Caregiver Burden | R=0.487, R2=0.237, p<0.001 | -0.414 | (-0.497, -0.331) | |
| Direct Effect | Patient ADL Caregiver Guilt | R=0.415 R2=0.172, p<0.001 | -0.155 | (-0.213, -0.096) | 37.44% |
| Indirect Effect | Patient ADL Caregiver Guilt Caregiver Burden | R=0.828, R2=0.658, p<0.001 | -0.259 | (-0.326, -0.196) | 62.56% |
Notes: ADL, Activities of Daily Living; CI, Confidence Interval; R, Multiple Correlation Coefficient; R2, Coefficient of Determination.
Fig. 1.
Mediation model of caregiver guilt.
Notes: ADL, Activities of Daily Living;β, standardised coefficient.
5. Discussion
5.1. Present condition of stroke patients' activities of daily living, caregiver guilt, and primary caregiver burden
Stroke patients exhibit diminished activities of daily living capabilities. As a sudden adverse life event, stroke onset is acute, with rapid progression and severe consequences, compounded by a high rate of disability, thereby impacting patients' ability to perform activities of daily living to varying degrees (Winstein et al., 2016). We found that the total mean score for Activities of Daily Living in stroke patients was 39.54, suggesting a need for assistance with daily tasks. This score is lower than that reported by previous researchers (Li et al., 2023). This discrepancy may be attributed to the inclusion of a cohort primarily in the acute phase of stroke, characterized by more severe clinical presentations.
Caregiver guilt was at a moderate level. Prior researchers have employed the English variant of the Caregiver Guilt Questionnaire among family caregivers of individuals with Alzheimer's disease (Roach et al., 2013), cancer (Duggleby et al., 2015), and psychiatric disorders (Butler, 2016). We applied the Chinese version of the Caregiver Guilt Questionnaire scale to caregivers of stroke patients, demonstrating high internal consistency. The primary caregiver guilt in this cohort was at a moderate level, potentially related to the emphasis on family responsibility in Chinese culture, which may lead caregivers to attribute changes in the patient's condition to themselves. Alternatively, it could be linked to a lack of medical knowledge, causing some caregivers to have unrealistic expectations for the patient's recovery, thereby leading to self-blame when the actual recovery does not meet these expectations (Li et al., 2017).
The primary caregiver burden was observed to be at a mild to moderate level. This finding is slightly lower than that reported by (Ashghali Farahani et al., 2021). This discrepancy may be attributed to the generally favourable physical health status of the caregivers included in this study, with 287 out of 312 (92%) caregivers reporting good or excellent health. Caregivers in better health may exhibit greater resilience to the physical and psychological stressors associated with caregiving, alongside enhanced self-management capabilities. Furthermore, the utilization of effective coping strategies by some caregivers could contribute to a reduced subjective burden. Therefore, for patients, the focus could be on functional rehabilitation training following the acute phase, utilizing early intervention and systematic rehabilitation plans to improve the ability to perform activities of daily living, assuming future researchers identify cause and effect. For caregivers, a multi-tiered care support system may be necessary; health education might be provided to help them establish realistic rehabilitation expectations and reduce unnecessary feelings of guilt. Furthermore, the maintenance of their physical and mental health should possibly be prioritized, with particular attention given to older caregivers or those with pre-existing health conditions.
5.2. Correlation between activities of daily living score in stroke patients and caregiver burden
We have demonstrated a negative correlation between the Activities of Daily Living score of stroke patients and the burden experienced by their primary caregivers, indicating that lower patient self-care abilities are associated with higher caregiver burden. These findings are consistent with the results reported by Caro et al. (2018) and Jesus et al. (2022). Researchers have suggested that stroke patients often experience varying degrees of functional impairment, significantly impacting their ability to perform activities of daily living. Consequently, patients are prone to negative emotions and increased dependency on care, which, in turn, can exacerbate the burden on their primary caregivers (Rodríguez-González et al., 2021). Notably, this correlation may exhibit dynamic changes across different phases of the disease. In the acute phase, when patients' functional impairments are most pronounced, caregiver burden often peaks. As rehabilitation interventions are implemented and patient function gradually improves, the caregiver burden may correspondingly be alleviated. However, if patients continue to experience severe functional limitations during the plateau phase, caregivers may face chronic, sustained stress. This long-term cumulative burden can be particularly detrimental (Videon et al., 2025). In clinical practice, it is essential to enhance patients' functional limitations, while also offering caregiver stage-specific support measures adapted to the peculiarities of each disease phase (Lobo et al., 2023).
5.3. The mediating effect of caregiver guilt on the connection between stroke patients' Activities of Daily Living score and primary caregiver burden was assessed
We found that caregiver guilt partially mediated the connection between stroke patients' Activities of Daily Living score and caregiver burden, suggesting that stroke patients' ability to perform activities of daily living may indirectly impact caregiver burden through caregiver guilt. This discovery elucidates a potential mechanism by which patient functional impairment influences the psychological state of caregivers. When patients' ability to perform activities of daily living declines, caregivers may experience negative emotions, such as self-blame and guilt due to their inability to meet the patients' care needs or witnessing their functional decline, which in turn exacerbates their perceived care burden (Cabrera et al., 2022, Chen et al., 2024). From a social-psychological perspective, this mediating effect may stem from the caregiver's attribution process (Su et al., 2023). The increased functional dependence of the patient makes caregivers face greater caregiving challenges. According to Weiner's attributional model (Stanley and Standen, 2000), when the actual caregiving outcomes fall short of expectations, caregivers are prone to internalise their responsibilities and generate self-blame for not doing enough (Spillers et al., 2008); At the same time, the emotional exhaustion caused by long-term caregiving may trigger moral dilemmas, and the negative emotions generated by the caregiver in the continuous high-pressure environment often conflict with the socially-and culturally-constructed expectations of the ‘ideal caregiver’ role, and this emotional conflict may further magnify the burden experienced (Prunty and Foli, 2019).
As patients' Activities of Daily Living levels improve, caregivers' feelings of guilt often correspondingly diminish, although this amelioration exhibits a notable lag. Initially, despite the patient's functional status beginning to improve, caregivers may remain entrenched in prior self-blame, requiring time to adjust their psychological state (Gallego-Alberto et al., 2022). This observed lag in emotional adjustment underscores the possible importance of addressing caregivers' subjective psychological well-being concurrently with the patient's objective functional gains in clinical interventions. It is noteworthy that this guilt-burden vicious cycle may be exacerbated by cultural factors (Qiu et al., 2018), particularly within Eastern cultures emphasizing familial responsibility, where caregivers are more inclined to attribute patient deterioration to their shortcomings. Therefore, when assessing caregiver burden, particular attention should be given to their feelings of guilt, which may represent a potential intervention target. Targeted psychological interventions, such as cognitive restructuring for irrational self-blame in cognitive behavioural therapy and self-acceptance exercises in mindfulness training, may help disrupt this mediating pathway (Gallego-Alberto et al., 2021, Romero-Moreno et al., 2022). Finally, a module on psychological support for carers could be considered for inclusion in the patient's rehabilitation programme, and improving the patient's functioning while enhancing the carer's psychological adjustment may be an effective strategy to reduce the overall burden of care.
Nevertheless, certain limitations must be acknowledged when analysing the findings of the present investigation. The cross-sectional format of the present investigation prevents the validation of the temporal precedence among independent, mediating, and dependent factors. Future longitudinal studies are warranted to confirm these findings. Secondly, we utilized self-report measures for variable assessment, which may introduce subjectivity and potential self-report bias. Finally, the sample was collected from a convenience sample from the Hunan region of China, which was potentially influenced by cultural context and thus may not have been representative. Future researchers should employ large-scale, multi-centre studies to validate these findings.
6. Implications for practice
Healthcare professionals could propose possibly effective strategies to reduce the caregiver burden of stroke patients through the impact of their self-care ability and the mediating role of caregiver guilt. Healthcare professionals could implement programmes to potentially improve patients' ability to perform activities of daily living and alleviate caregiver guilt to reduce their caregiver care burden. For example, healthcare professionals could consider organising activities of daily living training groups to potentially improve patients' activities of daily living through basic life skills training, such as dressing, eating, toileting, and similar. Patients could be encouraged to take part in rehabilitation training, and functional progress could be assessed on a regular basis. Progress could be fed back to caregivers in a timely manner. Healthcare professionals could conduct carers' psychological support groups and provide emotional relief and stress management courses to help carers correctly understand their own roles and alleviate caregiver guilt. Caregivers can be encouraged to participate in mutual support groups to share caregiving experiences and establish a social support network should this be proven effective.
7. Conclusion
We suggest that caregiver guilt partially mediates the association between the levels of activities of daily living in stroke patients and the hardship faced by their primary caregivers. Integrating rehabilitation training programmes to improve the patient's level of Activities of Daily Living and psychological adjustment programmes to alleviate caregiver guilt into care and treatment may help to reduce the caregiving burden of stroke caregivers. In the future, randomized control trials could be conducted to investigate interventions aimed at reducing the caregiving burden of stroke caregivers.
Ethic statement
The Biomedical Ethics Committee of Jishou University accepted the study, with approval number JSDX-2025-0034. All participants provided informed consent and willingly engaged in the study.
Funding statement
Regional Project of the National Natural Science Foundation of China (82260264); the Scientific Research Program of Hunan Provincial Education Department (23A0397); Natural Sciences Foundation of the Science and Technology Department in Hunan Province (2025JJ50707); Graduate Student Research Innovation Project of Jishou University (JDY2024098)
CRediT authorship contribution statement
Le Zhou: Writing – review & editing, Writing – original draft, Software, Methodology, Investigation, Funding acquisition, Formal analysis, Data curation, Conceptualization. Yaofeng Zhu: Writing – review & editing, Supervision, Resources, Project administration, Methodology, Funding acquisition, Conceptualization. Shuo Liu: Writing – review & editing, Visualization, Validation, Investigation, Data curation. Lisha Tang: Writing – review & editing, Visualization, Validation, Software, Investigation. Wenya He: Writing – review & editing, Resources, Project administration, Investigation. Huihong Zhong: Writing – review & editing, Visualization, Investigation, Data curation. Min Tian: Writing – review & editing, Visualization, Investigation, Data curation. Ru Tian: Writing – review & editing, Project administration, Formal analysis. Ping Li: Writing – review & editing, Methodology, Conceptualization.
Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. The authors assert the absence of any potential conflicts of interest.
Acknowledgments
We want to thank all the participants who patiently answered the questionnaires and express our deepest gratitude to the authors for their help and support.
Footnotes
Supplementary material associated with this article can be found, in the online version, at doi:10.1016/j.ijnsa.2025.100437.
Appendix. Supplementary materials
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