Relationship Between Illness Uncertainty and Family Resilience Among Caregivers of Stroke Patients in Chinese Nuclear Families: The Mediating Role of Perceived Stress

Introduction

The number of stroke patients in China is the highest in the world.¹ According to the data, By 2019, there were 17.04 million stroke patients in people aged 40 years and above in China, and 3/4 of the patients had residual complications such as motor impairment, cognitive impairment, speech impairment, and swallowing disorders.¹ Moreover, stroke was the second most common cause of death and the third leading cause of disability worldwide.² How to cope better depends largely on the patient’s family members.³ The nuclear family is defined as parents with or without unmarried children, regardless of the age of the unmarried children.⁴ The nuclear family is the predominant family model in modern urban and industrial societies and the first family type structure in the country.⁵ Research has shown that family structure determines the way in which resources within and outside the family coalesce and interact, and is a core element of family resilience.⁶

Family resilience refers to the ability and process of the family as a whole to cope with the stressful events that it encounters, helping it to disengage from difficult situations and regain a healthy adaptation of the family.^7,8 Stroke can also disrupt stable family structures and the disease creates a greater sense of uncertainty among family members.^9,10 Perceived stress is an individual’s subjective perception of internal and external stressful events.¹¹ In terms of unmarried children in nuclear families, some are still in their first semester of school, and with about 75% of stroke patients being left with varying degrees of disability,¹² caregivers are faced with multiple pressures such as the burden of long-term care, child rearing, and financial obligations. Stress-coping theory¹³ adds positive coping and positive emotions to traditional theoretical frameworks; that is, instead of focusing solely on the negative emotions brought about by the stressor, the focus is more on managing the stressful event with positive coping styles.

Existing research suggests that disease uncertainty is negatively associated with family resilience;¹⁴ perceived stress mediates the relationship between disease uncertainty and quality of life,¹⁵ and family resilience is related to quality of life.¹⁶ Therefore, this study proposes the hypothesis that perceived stress may be an important mediating variable between illness uncertainty and family resilience. The study explores how illness uncertainty in carers of stroke patients in nuclear families affects family resilience through perceived stress, with the individual’s stress response to the stressor as the mediating variable. In uncovering the positive psychology of caregivers of stroke patients in small Chinese families, a theoretical basis can be provided for interventions on family resilience for caregivers of stroke patients in nuclear families.

Materials and Methods

Study Design and Participants

A convenience sampling method was used to recruit 350 caregivers of stroke patients who were admitted to the neurology and neurosurgery units of four tertiary hospitals in Suzhou City, Jiangsu Province, China, from January to December 2023. The participant inclusion criteria were as follows: patient and carer belonging to the same nuclear family; carers of stroke patients meeting the diagnostic criteria in the Clinical Guidelines for Neurology (2010) compiled by the Chinese Medical Association and whose diagnosis has been confirmed by CT or MRI;patients in the acute period of stroke with stable vital signs; family members with primary caring responsibilities, that is, the person who spends the most time caring for the patient and who has the most caregiving tasks during the day; aged ≥ 18 years; able to co-operate with investigators. The exclusion criteria were as follows: persons with other major traumatic events in the family; and being a paid professional escort.

Data Collection

Before the survey, the researcher was trained in matters related to administering surveys. During data collection, for subjects with reading difficulties, the researcher paraphrased the questionnaire entries and recorded the subjects’ answers faithfully. The researcher explained any entries that the subjects did not understand, but did not interfere with the subjects’ choice of answers. The questionnaires were distributed on-site, anonymised, filled out independently, collected on-site, and checked for completeness, with the whole survey taking approximately 20–30 minutes to complete. According to the formula n=μ2α/2σ2/δ2,¹⁷ α=0.05, μ0.05/2=1.96 were taken in this study. The results of the pre-survey conducted in this study among 60 stroke carers showed that the total family resilience score was (92.85±19.02); therefore, σ=19.02 and δ takes the absolute value of (X-μ). Based on previous literature,¹⁸ it is known that the total family resilience score is (96.66±8.15); therefore, n=1.962×19.022/3.812. The calculation was made for a sample of 96, taking into account a 20% dropout rate, estimating a total of 116. In addition, structural equation model generally recommends a median sample size of 200.¹⁹ Including pre-survey data, a total of 365 primary carers were recruited to complete the questionnaire: 11 carers refused to participate, four questionnaires were excluded due to incomplete information, and 350 (95.9%) participants returned a complete and valid questionnaire.

Measures

Socio-Demographic Characteristics

Based on an extensive review of the literature, a self-designed questionnaire was used to collect the basic demographic characteristics of acute stroke patients and their primary caregivers within the nuclear family. The data included the patient’s age, gender, marital status, type of stroke (obtained by consulting medical records), whether they were the main source of family finances before the disease, and their level of self-care ability (A score of ≤60 for moderate and severe dependence and 61–99 for mild dependence,²⁰ this was obtained by consulting the medical records). Information on the primary caregiver included age, sex, marital status, place of residence, daily caregiving hours, literacy level, caregiver–patient relationship, and monthly household disposable income. These data were collected mainly through medical records and caregiver self-reporting.

Shortened Chinese version of the Family Resilience Assessment Scale (FRAS-C)

The FRAS-C was translated and introduced by Li et al.²¹ It consists of 32 entries in three dimensions, including family communication and problem solving, utilizing social resources, and maintaining a positive outlook. The scale is rated on a four-point Likert scale. The total score ranges from 32 to 128, with “strongly disagree” scoring 1 and “strongly agree” scoring 4. The higher the score, the higher the level of family resilience. The Cronbach’s coefficient for this scale among the stroke patient caregivers in this study was 0.976.

Chinese Perceived Stress Scales (CPSS)

The CPSS was compiled and revised by the Chinese scholar Yang,²² and is mainly used to assess the individual’s perception of stressful events. The scale consists of 14 items, including two dimensions: sense of tension (7 items) and loss of control (7 items). The scale was scored on a five-point Likert scale, in which the seven entries of the sense of loss of control (4, 5, 6, 7, 9, 10, 13) were reverse-scored (4–0), with the total score ranging from 0 to 56. The scores for normal stress ranged from 0 to 28, for relatively high pressure were 29–42, and for excessive stress were 43–56. The higher the scores, the higher the perceived stress. The Cronbach’s coefficient for this scale among the stroke patient caregivers in this study was 0.976.

Parents’ Perception of Uncertainty Scale—Family (PPUS-FM)

The survey was conducted using the Chinese version of the Parents’ Perception of Uncertainty Scale—Family (PPUS-FM), which was translated and modified by Cui.²³ The scale consists of 30 items, including four dimensions: ambiguity (13 items), complexity (8 items), inconsistency (5 items), and unpredictability (4 items). The scale is based on a five-point Likert scale. Method: 1 to 5 points from “strongly agree” to “strongly disagree”, with 20 positive points and 10 negative points. Entries 6, 9, 11, 19, 23, 25, 27, 28, 30, and 31 were reverse-scored, and the total score of the scale ranged from 30 to 150 points, divided into three levels, with 30–70 points being low, 71–111 points being medium, and 112–150 points being high. The higher the score, the higher the uncertainty of the disease. The Cronbach’s alpha coefficient for this scale among the stroke patient caregivers in this study was 0.968.

Statistical Analysis

The data were entered using EpiData 3.1 and were double-checked and statistically analyzed using SPSS 26.0. Bilateral p< 0.05 was statistically significant. Depending on whether the data obeyed a normal distribution, continuous data were described by mean ± standard deviation (SD) or median, categorical data by frequency and percentage, and Pearson correlation was used to explore the relationship between these variables. Structural equation model (SEM) was used to test the mediating effect of perceived stress, bias-corrected non-parametric percentile bootstrap analysis was used with a setting of 5000 repetitions of the sample, and confidence intervals were set to 95% to test for the significance of the mediating effect. The model fitting was carried out using the maximum likelihood ratio method. The chi-square/degrees of freedom (χ2/df), comparative fit index (CFI), Tucker–Lewis index (TLI) and incremental fit index (IFI), relative fit index (RFI), norm fit index (NFI), comparative fit index (GFI) and root-mean-square of the approximation error (RMSEA) were used to evaluate the model’s goodness-of-fit. The 95% confidence intervals (CI) were used to estimate the significance of the mediation effect. The mediation effect is significant if the 95% CI does not contain 0. SEM was run in AMOS 23.0.

Results

Demographic Characteristics

Caregivers of stroke patients with acute period strokes in 350 nuclear families, 73 cases (20.9%) were aged <45 years, 227 cases (64.8%) were aged 45 to 60 years, 50 cases (14.3%) were aged >60 years. There were 279 cases (79.7%) of ischaemic stroke and 71 cases (20.3%) of haemorrhagic stroke. The demographic characteristics of the 350 nuclear families are shown in Table 1.

Table 1 Descriptive Statistics of Demographic Characteristics (n = 350)

Illness Uncertainty, Perceived Stress, and Family Resilience Scores for Stroke Caregivers

The total scores of family resilience, illness uncertainty, and perceived stress of the stroke caregivers in this study were (90.55±21.29), (82.17±22.79), and (33.95±15.65), respectively. The scores for each dimension are shown in Table 2

Table 2 Illness Uncertainty, Perceived Stress, and Family Resilience Scores for Stroke Caregivers (n=350)

Analysis of the Correlation Between Illness Uncertainty, Perceived Stress, and Family Resilience Among Stroke Carers

According to the results of bivariate correlation analyses, illness uncertainty was significantly positively associated with perceived stress and significantly negatively associated with family resilience; perceived stress was significantly negatively associated with family resilience; the results are shown in Table 3

Table 3 Correlation Analysis Between Illness Uncertainty, Perceived Stress, and Family Resilience Among Stroke Caregivers

Mediating Role of Perceived Stress Between Illness Uncertainty and Family Resilience

SEM for Model Testing

Structural equation model was constructed using illness uncertainty as the independent variable, family resilience as the dependent variable, and perceived stress as the mediator variable. The SEM results showed that the structural equation model fitted the data well:²⁴ χ2/df = 1.659, SRMR = 0.0360, GFI = 0.975, NFI = 0.976, CFI = 0.990, TLI = 0.986, RFI=0.964, IFI= 0.990, and RMSEA = 0.043.

Mediating Role of Perceived Stress Between Illness Uncertainty and Family Resilience

As presented in Figure 1, the standardized coefficient of illness uncertainty on perceived stress was β=0.339, p<0.001, of perceived stress on family resilience was β=−0.269, p< 0.001, and of illness uncertainty on family resilience was β=−0.516, p<0.001, with significant levels of individual path coefficients for the model. A bias-corrected non-parametric percentile bootstrap analysis with 5000 replicate samples was set, and the confidence interval was set at 95% to test for the significance of the mediating effect. The results showed that the direct effect of illness uncertainty on family resilience was −0.516, the indirect effect of caregiver illness uncertainty → perceived stress → family resilience was −0.091, and the total effect of illness uncertainty on family resilience was −0.607, with a 95% CI excluding 0; thus, the mediating effect was established.

Figure 1 Fitted Model of The Mediating Role of Caregiver Perceived Stress With Illness Uncertainty and Family Resilience.

The above model was further tested using the bootstrap bias-corrected self-help method; the results are shown in Table 4.

Table 4 Mediating Model Examination by Bootstrap

Discussion

Family Resilience Among Caregivers of Stroke Patients Was at the Medium Lower Level

The results showed that the total family resilience score for the caregivers of stroke patients was (90.55±21.29) and the mean score of the entries was (2.83±0.67). These findings are lower than those of Chang²⁵. On the one hand, this may be related to the fact that 256 (73.1%) patients in this study were cared for by their spouses, at which point the close parent–child relationship in the longitudinal axis within the nuclear family constitutes a good cohesion within the family, which provides a coping synergy for positive coping with risk adversity. However, as some children in nuclear families are still in their first semester of school and rely on their parents to support them with food, clothing, shelter, and transport, caregivers need to take care of their sick spouses as well as raise their children, and their coping capacity is weakened.²⁶ This leads to lower levels of psychological resilience²⁷ and, consequently, lower levels of family resilience.²⁸ On the other hand, nearly half of the patients in this study were heavily dependent on others for self-care, and in cross-sectional surveys of breast cancer patients²⁹ and dementia patients,³⁰ longitudinal studies of families of cancer patients,³¹ and qualitative studies of families of patients with schizophrenia³² and dementia patients,³³ scholars have found that the more severe the degree of illness of the patient, the lower the level of family resilience. In this study, 60.3% of the caregivers were female, bound by the traditional female family role of caregiving, female caregivers tend to overextend themselves to care for their spouses out of instinct, resulting in a deep sense of “overwhelm”. The longer the caregiving time, the greater the caregiver’s commitment to the patient, the greater his or her own consumption, and the companionship of the patient will change his or her own habits of living, socializing, resting, and exercising. This makes the caregiver more prone to adverse emotions, forcing adverse changes to the harmonious and stable family relationship and affecting family cohesion, which is not conducive to the generation of family resilience.³⁴ It is suggested that medical professionals and the community should mobilize family, institutional, or social organizational forces to provide respite services, emotional support, etc, for carers in order to promote proper family functioning.

Moderate Levels of Illness Uncertainty Among Caregivers of Stroke Patients

The results showed that the total illness uncertainty score of caregivers of hospitalized stroke patients was (82.17±22.79), which was in line with the findings of Liu et al,³⁵ with the highest mean uncertainty score (2.80±1.08) and the highest score among the uncertainty entries being “It is difficult to know if the treatments/medications are helping” scored the highest. The reason for this is that in our study, the caregivers in the nuclear family were the parents of the patients in 33 cases (9.4%), and such caregivers were relatively older, coupled with the fact that the patients were mostly without spouses, lacked the ability to obtain information about the disease from their other half, and had a higher level of fear of the disease.³⁶ On the other hand, approximately 81.7% of the carers had an educational level below secondary school, making it difficult for them to properly understand disease-related information, and they had more questions about rehabilitation training, disease management, life care, and other aspects, and inevitably had doubts about the efficacy of stroke treatments. It is suggested that medical staff increase disease knowledge guidance and education for carers of patients with relatively low literacy and who have no spouse, which can be carried out in the form of face-to-face explanations, knowledge brochures, ward-unified mission, etc., to increase the frequency of doctor–patient exchanges to improve carers’ degree of knowledge regarding the disease and reduce their level of uncertainty.

Perceived Stress Among Caregivers of Stroke Patients Was at the Relatively High Levels

The results showed that the total score for perceived stress was (33.95±15.65), which was higher than the findings of Guo et al.¹² One reason is that nearly two-thirds of the patients in our study were aged between 45 and 60 years old, and the survey showed that the incidence of stroke in young and middle-aged people in China is 66.6%.³⁷ Because most of this age group is in the most important stage of social participation, in 271 cases (77.4%), the stroke patient had been the main source of family income before the disease and shouldered multiple financial obligations such as the mortgage, car loan, and raising and nurturing the children. Due to the small size of the nuclear family, there is a lack of replaceable caregivers. They are unable to fully devote themselves to their work and the family income is often not enough to make ends meet; caregivers face the double pressure of illness and finances. On the other hand, in this study, there were 39 cases (11.1%) in which the caregivers were the children of the patients, and most of these nuclear families consisted of one parent and their unmarried children; However, parents love their children and will plan far ahead for them, especially after a parent’s illness, and worry that their children will have nothing to rely on in the future. However, due to the stigma associated with the disease³⁸ and the impact of modern marriage concepts and high marriage costs,³⁹ this type of nuclear family, which is unable to afford to marry, often attracts a different perspective,⁴⁰ resulting in tremendous mental stress for both patients and caregivers. High levels of perceived stress can easily lead to various problems such as cortisol rhythm disorders, non-compliance with healthcare system behaviors, and damage to one’s own health.⁴¹ Therefore, medical staff need to help carers of stroke patients to face their problems rationally, encourage patients to accept reality and to face the later stage of rehabilitation and treatment with a positive attitude. At the governmental level, the reimbursement rate of medical insurance for stroke treatment and rehabilitation should be increased to alleviate the financial pressure on core family members.

Family Resilience in Relation to Illness Uncertainty and Perceived Stress

The results of the study showed that the family resilience among caregivers of stroke patients was negatively correlated with disease uncertainty (r = −0.481, P < 0.01). When the caregiver has knowledge of the disease risk factors, causes, treatment programmers, rehabilitation plans, etc., their level of uncertainty about the disease will be reduced, which reduces the level of anxiety and depression,⁴² thus increasing individual resilience.⁴³ At this point, if the core family members can share the responsibility and actively utilize the internal resources of the family, they will successfully withstand the crisis, restore the stability of the family, and improve family resilience.

The results of the study also showed that the family resilience of caregivers of stroke patients was negatively correlated with perceived stress (r = −0.420, P < 0.01). Consistent with Tao’s⁴⁴ findings, the higher the perceived stress, the lower the family’s confidence in coping with the crisis and the weaker the buffering capacity against stress, resulting in a lower level of family resilience. However, it is precisely because of the simple structure of the nuclear family and the small number of members that when one person is sick, the stable and close family relationship in the nuclear family encourages the formation of the idea of “sharing the same burden” among members. This good family relationship is the core of the family’s homeostatic mechanism, which is the key to the success of family resilience. It is suggested that medical personnel should encourage the frequency of interaction and communication among nuclear family members to enhance family cohesion and thereby improve family resilience.

Perceived Stress Mediates the Relationship Between Illness Uncertainty and Family Resilience

This study was validated by structural equation model using AMOS 23.0, which showed that there was a direct effect between illness uncertainty and family resilience in caregivers of stroke patients (β = −0.516, P < 0.05), a direct effect between illness uncertainty and perceived stress (β = 0.339, P < 0.05), and a direct effect between perceived stress and family resilience (β=−0.269, P<0.05). Illness uncertainty can indirectly affect family resilience through perceived stress, with an indirect effect of −0.091 and a total effect of −0.607. Perceived stress partially mediates the relationship between caregivers’ illness uncertainty and family resilience in stroke patients; ie, caregivers’ mastery of high levels of the illness can indirectly affect the level of family resilience by decreasing perceived stress. The reason for this is that the stroke caregivers in nuclear families reduce the level of illness uncertainty while relying on the disease knowledge imparted by healthcare professionals to reduce the level of perceived stress, and lower perceived stress brings caregivers positive and active emotions, which enables them to recognize their own importance to the patient and the family, have higher levels of hope,⁴⁵ feel more caring and supportive,⁴⁶ and more easily grow and improve their family resilience.

Strengths and Weaknesses of the Study

Our study innovatively analyzed the current status of illness uncertainty, perceived stress and family resilience among caregivers of stroke patients within the Chinese nuclear family from the perspective of family structure, and explored the relationship between them using structural equation model. The pathway relationships revealed by our study could provide new insights and references for interventions on family resilience for caregivers of stroke patients. However, this study is only a cross-sectional survey. Using a structural equation model can only test the correlation between variables, not prove causality between them and the mediating role of perceived stress should be verified longitudinally. Moreover, our research was conducted in just one city, the findings had limits on extrapolation.

Conclusions

Perceived stress mediates the relationship between illness uncertainty and family resilience among caregivers of stroke patients in nuclear families. This result provides a new practical perspective to explore the mechanisms influencing the relationship between illness uncertainty and family resilience. In the future, healthcare professionals should proactively educate caregivers about the disease and caregiving to enhance caregivers’ sense of control over their care and to reduce illness uncertainty; Meanwhile, a variety of interventions should be implemented to help caregivers reduce perceived stress and ultimately improve family resilience.