Abstract
Aim
To describe the lever of fear of disease progression among older spousal caregivers of cancer patients in China and to explore the associated factors and their interrelationships.
Background
Older spousal caregivers of cancer patients may experience a high level of fear of disease progression, potentially exceeding that experienced by the patients themselves. However, limited attention has been given to the factors influencing this fear in this specific population.
Design
A cross-sectional study design was employed.
Methods
A total of 210 older spousal caregivers of cancer patients completed a general sociodemographic and disease questionnaire, the Chinese version of the Fear of Disease Progression Questionnaire-Short-Form for Partners, Form C of the Multidimensional Health Locus of Control Scale, the Family Avoidance of Communication About Cancer Scale, and the Brief Health Literacy Assessment. Data were analyzed using univariate analysis, Pearson correlation analysis, multiple linear regression, structural equation modeling, and bootstrap mediation analysis.
Results
Older spousal caregivers of cancer patients reported high levels of fear of disease progression (35.21 ± 9.79). Powerful-others health locus of control and health literacy were both weak negatively correlated with fear of disease progression (P < 0.01), whereas family avoidance of communication about cancer showed a positive correlation (P < 0.01). Moreover, family avoidance of communication about cancer and health literacy acted as parallel mediators between powerful-others health locus of control and fear of disease progression.
Conclusions
Fear of disease progression among older spousal caregivers of cancer patients can be alleviated through nursing interventions that enhance communication between them and medical staff, promote open family communication about cancer, and improve their health literacy through multimodal approaches.
Keywords: Older spouse, Caregiver, Cancer, Fear of disease progression, Health locus of control, Family communication, Health literacy
Introduction
Global cancer statistics indicate that nearly 20 million new cancer cases were diagnosed in 2022, the number propected to rise to 35 million by 2050 [1]. Older adults account for approximately 78% of all cancer patients [2], highlighting the significant number of older spousal caregivers who play a crucial role in proving social and emotional support throughout the cancer trajectory. However, there caregivers often experience considerable psychological distress, including fear of disease progression (FoP) [3, 4]. FoP refers to the fear of recurrence or progression and its psychosocial consequences [5], which is associate with emotional burden, reduced quality of life [6], and increased healthcare costs [7]. Notably, spousal caregiver may report even higher levels of FoP than patients themselves [4, 8]. Despite its clinical relevance, few studies have examined FoP among older spousal caregivers. Guided by the Family Model of Predictors of Fear of Cancer Recurrence [9], this study aimed to explore factors associated with FoP in this population from both individuals and family perspectives.
Health locus of control (HLC) reflects an individual’s beliefs regarding whether their health is influenced by internal or external factors [10, 11]. It has been linked to psychological outcomes such as depression [12] and may similarly affect FoP (H1). From a family-system perspective, communication patterns play a vital role in coping with cancer. Family avoidance of cancer communication—a pattern where members refrain from openly discussing cancer-related concerns to protect one another [13, 14] —has been shown to influence FoP in couples facing breast cancer [15]. Thus, we hypothesize that family avoidance of cancer communication is associated with FoP among older spousal caregivers (H3).
At the individual level, health literacy—the capacity to access, understand, and use health information [16] —may also shape FoP. Previous research indicates that limited health literacy is associated with higher FoP in cancer patients [17]. though its role among spousal caregivers remains underexplored (H5). Furthermore, HLC may facilitate or hinder communication and information-seeking behaviors. Believing that external agents (e.g., doctors or family) influence health outcomes may promote active communication and improve health literacy [18, 19]. Therefore, we propose that HLC is associated with family avoidance of cancer communication (H2) and health literacy (H4).
Prior studies suggest that family communication and health literacy may serve as mediators in psychosocial models of cancer adaptation [20, 21]. Effective communication supports information acquisition and informed decision-making [18], thereby improving health literacy. We therefore hypothesize that family avoidance of cancer communication and health literacy act as serial mediators in the relationship between HLC and FoP (H6).
In summary, this study examines the serial mediating roles of family avoidance of cancer communication and health literacy between HLC and FoP among older spousal caregivers of cancer patients. The hypothesized model is illustrated in Fig. 1.
Fig. 1.
Hypothetical model diagram
Methods
Study design and participants
This study is an observational study. A convenience sampling method was used to recruit older spousal caregivers of cancer patients who were hospitalized in the oncology departments of two tertiary Grade A hospitals in Shandong Province between December 2023 and April 2024. According to Kendall’s sample size estimation method for descriptive studies [22], the required sample size should be 5 to 10 times the number of variables. This study incorporates 15 variables. Considering a potential questionnaire invalidation rate of 20%, the estimated required sample size ranged from 94 to 188 cases. According to the requirements for obtaining stable results in structural equation modeling (SEM), a minimum sample size of 200 cases is recommended [23]. Ultimately, a total of 210 participants were recruited to meet the sample size requirements.
The inclusion criteria were as follows: (1) legally married to the patient; (2) aged ≥ 60 years; (3) identified as the primary caregiver [24] (i.e., aware of the patient’s condition, providing the longest-term care, bearing the greatest caregiving burden and unpaid family member), with at least a primary school education, and involved in medical decision-making; (4) no history of mental illness and able to communicate clearly; (5) voluntary participation; and (6) screened for cognitive function using the Mini-Mental State Examination (MMSE), with dementia defined as MMSE score ≤ 20 for participants with primary school education and ≤ 24 for those with junior high school education or above.
The exclusion criteria were as follows: (1) the caregiver had severe dysfunction of the heart, lungs, kidneys, or other major organs; (2) the caregiver had a mental disorder, cognitive impairment, or dementia; and (3) the caregiver had significant hearing, visual, or speech impairments.
Measurements
Validated scales with demonstrated reliability and sensitivity appropriate for older populations were selected for this study.
General sociodemographic and disease survey
This survey collected information on the older spousal caregivers, including sex, age, residence, educational level, occupation, family monthly income, number of children, and number of chronic diseases (such as hypertension, chronic heart disease, diabetes, chronic osteoarthritis, chronic kidney disease, and chronic gastrointestinal disorders etc.). Patient-related information included self-care ability, family history of cancer, disease duration, and TNM staging.
Chinese fear of disease progression questionnaire-short-form for partners (FOP-Q-SF/P)
The Chinese version of the FOP-Q-SF/P [25] was used to assess the FoP in patients’ spouses. The questionnaire comprises two dimensions: physical health and social-family function, with a total of 12 items. Responses are rated on a 5-point Likert scale, yielding a total score ranging from 12 to 60, where higher scores indicate greater FoP. A score of ≥ 34 is considered a borderline threshold indicative of mental dysfunction related to FoP [26]. The scale has demonstrated good reliability and validity [25], in the present study, the Cronbach’s α coefficient was 0.89.
Form C of the multidimensional health locus of control (MHLC-C)
The Chinese version of the MHLC-C was used to assess HLC among patients aged 18 years and older in medical settings [10, 27]. The MHLC-C consists of 18 items divided into three subscales: internal HLC, chance HLC, and powerful-others HLC (PHLC). Individuals with an internal HLC believe that their health or illness is influenced by their own behaviors or beliefs. Chance HLC reflects the belief that health is controlled by luck, fate, or other external forces. Powerful-others HLC refers to the belief that health is influenced by the actions of doctors or other significant individuals [11]. Each item is rated on a 6-point Likert scale. Scores for each subscale are calculated by summing the corresponding item scores. The highest subscale score indicates the predominant type of HLC. The Cronbach’s α coefficient in this study was 0.86.
Family avoidance of communication about cancer scale (FACC)
The Chinese version of the FACC was used to assess the perceived degree of openness or avoidance in family cancer-related communication among patients with breast cancer and their family caregivers [28]. The scale comprises five items rated on a 5-point Likert scale. For each item, spouses select the number that best reflects their communication about the disease over the past month. The original total score is calculated as the average of the five items. This raw score is then converted to a standardized score ranging from 0 to 100 using the formula: (original score − 1) / 4 × 100, where higher scores indicate greater family avoidance of cancer-related communication. The Cronbach’s α coefficient of the scale in this study was 0.90.
Brief health literacy assessment scale
The Mainland China version of the Brief Health Literacy Assessment Scale was used to evaluate self-perceived health literacy among older adults [29]. The scal consists of two dimensions and 10 items, each rated on a 5-point Likert scale. Total scores range from 10 to 50, with higher scores indicating better health literacy. Based on criteria from the National Health Literacy Monitoring [30], a threshold of 80% of the maximum score (40 points) was used to define qualified health literacy, with scores ≥ 40 considered qualified. In this study, the Cronbach’s α coefficient for the scale was 0.96.
Procedure
The research team comprised three oncology nurses who were not responsible for patient care. All team members received standardized training and used consistent language during the questionnaire administration. A face-to-face paper-based survey was conducted. Before completing the questionnaire, the purpose and importance of the study were explained to participants after obtaining informed consent from the patients’ spouses. For participants unable to complete the questionnaire independently, investigators read each item aloud and recorded responses accordingly. Questionnaires were distributed and collected on-site, and missing items were checked immediately to ensure data completeness. Consequently, no missing data were found in the final dataset. Data entry was performed independently by two individuals. A total of 230 questionnaires were distributed, with 210 valid responses collected, yielding an effective response rate of 91.30%.
Ethical considerations
All methods in this study were performed in accordance with relevant guidelines and regulations. The study protocol was approved by the Ethics Committee of the Second Qilu Hospital of Shandong University (approval number: KYLL2024468). All procedures conformed to the ethical standards of the responsible committee on human experimentation and the Helsinki Declaration. Data were collected only after obtaining informed and written consent from each participant.
Statistical analysis
Data were analyzed using IBM SPSS version 24.0. Categorical variables are presented as frequencies and percentages, while continuous variables are expressed as means ± standard deviations. Univariate analysis (t-test and one-way ANOVA), Pearson correlation analysis, and multiple linear regression analysis were performed to identify variables for inclusion in SEM. SEM was conducted using AMOS version 26.0, and the bootstrap method was employed to test the mediating effects. A two-tailed P value < 0.05 was considered statistically significant.
Results
Sociodemographic characteristics
Most participants in this study were aged 60–69 years. The older spousal caregivers of patients were primarily from rural areas, had completed junior high school education, were engaged in farming. The cancer patients were covered by resident medical insurance and their average disease duration was 12.68 ± 19.57 months. Detailed information is presented in Table 1, with the upper section showing characteristics of the spouses of cancer patients and the lower section showing characteristics of the patients. Using the Skewness-Kurtosis test to examine the normality of the numerical values, the result indicated that the FoP values conform to a normal distribution.
Table 1.
Sociodemographic characteristics and univariate analysis results (n = 210)
| Variables | Group | n | Percentage(%) | FoP score | F | P | LSD-t |
|---|---|---|---|---|---|---|---|
| The older spousal caregivers of patients | |||||||
| Sex | Male | 114 | 54.3 | 34.58 ± 9.69 | 1.04 | 0.31 | |
| Female | 96 | 45.7 | 35.96 ± 9.90 | ||||
| Age(years) | 60–69 | 192 | 91.4 | 35.18 ± 9.75 | 0.08 | 0.93 | |
| 70–79 | 17 | 8.1 | 35.29 ± 10.82 | ||||
| ≥ 80 | 1 | 0.5 | 39.00 ± 0.00 | ||||
| Residence | ①Rural | 84 | 40.0 | 36.17 ± 11.37 | 3.05 | 0.05 | ②>③ |
| ②Town | 54 | 25.7 | 36.74 ± 7.65 | ||||
| ③City | 72 | 34.3 | 32.94 ± 8.90 | ||||
| Educational level | Primary school or below | 21 | 10 | 32.38 ± 12.88 | 1.23 | 0.30 | |
| Junior high school | 71 | 33.8 | 35.61 ± 10.26 | ||||
| Senior high school or secondary specialized school | 64 | 30.5 | 36.89 ± 9.77 | ||||
| Junior college or higher vocational school | 19 | 9.0 | 33.68 ± 7.57 | ||||
| Bachelor degree or above | 35 | 16.7 | 33.86 ± 7.34 | ||||
| Occupation |
Vocational institution or state-owned enterprise |
53 | 25.2 | 34.02 ± 9.22 | 0.68 | 0.61 | |
| Private sector | 31 | 14.8 | 34.35 ± 9.14 | ||||
| Self-employed | 41 | 19.5 | 35.07 ± 9.09 | ||||
| Farmers | 65 | 31.0 | 36.78 ± 10.76 | ||||
| Unemployed | 20 | 9.5 | 34.85 ± 10.56 | ||||
| Family monthly income(RMB) | ≤ 1000 | 48 | 22.9 | 35.21 ± 11.79 | 1.16 | 0.33 | |
| 1000–5000 | 95 | 45.2 | 36.36 ± 9.79 | ||||
| 5000–10,000 | 50 | 23.8 | 33.20 ± 7.95 | ||||
| > 10,000 | 17 | 8.1 | 34.71 ± 8.16 | ||||
| Number of children | ≤ 1 | 87 | 41.4 | 34.09 ± 8.61 | 2.19 | 0.11 | |
| 2–3 | 113 | 53.8 | 36.41 ± 10.61 | ||||
| > 3 | 10 | 4.8 | 31.40 ± 8.34 | ||||
| Number of diseases | 0 | 164 | 78.1 | 35.56 ± 10.15 | 0.81 | 0.45 | |
| 1–2 | 42 | 20 | 33.60 ± 8.57 | ||||
| ≥ 3 | 4 | 1.9 | 37.75 ± 4.99 | ||||
| The patients | |||||||
| Self-care ability | ①Cannot care for self | 7 | 3.3 | 35.91 ± 10.47 | 3.10 | 0.05 | ②>③ |
| ②Partial self-care | 41 | 19.5 | 38.51 ± 9.70 | ||||
| ③Full self-care | 162 | 77.1 | 34.30 ± 9.64 | ||||
| Family history of cancer | No | 177 | 84.3 | 34.99 ± 10.00 | 0.57 | 0.45 | |
| Yes | 33 | 15.7 | 36.39 ± 8.64 | ||||
| TNM staging | ①I | 72 | 34.3 | 29.97 ± 8.04 | 18.40 | 0.00 | ②>① |
| ②II | 61 | 29.0 | 37.54 ± 8.11 | ③>① | |||
| ③III | 77 | 36.7 | 38.26 ± 10.56 | ||||
Univariate analysis of the FoP
The results of the univariate analysis (Table 1) indicated that FoP among older spousal caregivers of cancer patients varied significantly according to the residence of the cancer patients’ spouses, the patients’ self-care ability, and TNM staging. LSD-t showed that FoP levels among spouses of older cancer patients living in towns were significantly higher than those residing in cities; FoP levels among spouses of older cancer patients were significantly higher when caring for patients with partial self-care ability compared to those who were full self-care; Additionally, FoP scores among spouses of older cancer patients at TNM stage I were significantly lower than those in patients at the other stages.
Correlation analysis among the study variables
The mean FoP score was 35.21 ± 9.79. Pearson correlation analysis (Table 2, at the end of the text) showed that powerful-others HLC, and health literacy were weak negatively correlated with FoP (r = -0.34, P < 0.01; r = -0.31, P < 0.01, respectively), whereas family avoidance of communication about cancer was weak positively correlated with FoP (r = 0.32, P < 0.01).
Table 2.
Correlations among HLC, family avoidance of cancer communication, health literacy and FoP (r, n = 210)
| Variables | M ± SD | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 1. Fear of disease progression | 35.21 ± 9.79 | 1 | ||||||||||
| 2. Physical health | 22.34 ± 6.20 | 0.94** | 1 | |||||||||
| 3. Social-family function | 9.71 ± 3.74 | 0.81** | 0.56** | 1 | ||||||||
| 4. HLC | 64.10 ± 13.36 | −0.17* | -0.16* | -0.09 | 1 | |||||||
| 5. Internal HLC | 21.72 ± 4.60 | 0.11 | 0.10 | 0.13 | 0.72** | 1 | ||||||
| 6. Powerful-others HLC | 22.76 ± 8.32 | -0.34** | -0.30** | -0.27** | 0.76** | 0.23** | 1 | |||||
| 7. Chance HLC | 19.62 ± 5.36 | 0.01 | -0.01 | 0.07 | 0.69** | 0.57** | 0.15* | 1 | ||||
| 8. Family avoidance of communication about cancer | 45.60 ± 29.51 | 0.32** | 0.32** | 0.22** | -0.24** | -0.04 | -0.34** | -0.03 | 1 | |||
| 9. Health literacy | 36.38 ± 8.39 | -0.31** | -0.28** | -0.25** | 0.41** | 0.24** | 0.41** | 0.18* | -0.28** | 1 | ||
| 10. Health information literacy | 21.36 ± 5.16 | -0.32** | -0.29** | -0.26** | 0.41** | 0.24** | 0.42** | 0.17* | -0.28** | 0.97** | 1 | |
| 11. Communication literacy | 15.02 ± 3.59 | -0.27** | -0.24** | -0.22** | 0.36** | 0.22** | 0.36** | 0.16* | -0.26** | 0.94** | 0.84** | 1 |
Note: *P < 0.05; **P < 0.01. M = mean, SD = standard deviation
Multiple linear regression analysis of FoP
Multiple linear regression analysis (Table 3) was conducted to identify factors influencing FoP, using variables that were significant in the univariate and correlation analyses as independent variables, set FoP as the dependent variable. Model 1 included residence (of the older spousal caregivers), self-care ability, and TNM staging (of the patients), with an adjusted R² of 0.17 (P < 0.001). Model 2 further adjusted for powerful-others HLC, family avoidance of cancer communication, and health literacy, resulting in an adjusted R² of 0.28 (P < 0.001). The variance inflation factor (VIF) values were all below 10, indicating no significant multicollinearity among the independent variables [31]. The results indicated that the FoP among spouses of older cancer patients was influenced by their powerful-others HLC, health literacy, family avoidance of cancer communication, and the patient’s TNM staging.
Table 3.
Results of multivariate linear analysis (n = 210)
| Variables | Model 1 | Model 2 | ||||||
|---|---|---|---|---|---|---|---|---|
| B | β | t | P | B | β | t | P | |
| Residence of the older spousal caregivers (town) | 0.65 | 0.03 | 0.41 | 0.68 | 0.02 | 0.01 | 0.01 | 0.99 |
| Residence of the older spousal caregivers (city) | -3.24 | -0.16 | -2.21 | 0.03 | -2.32 | -0.11 | -1.65 | 0.10 |
| Partial care | 1.80 | 0.073 | 0.88 | 0.38 | 1.266 | 0.05 | 0.66 | 0.51 |
| Full care | -0.40 | -0.02 | -0.24 | 0.81 | -0.73 | -0.04 | -0.46 | 0.64 |
| TNM stage II | 7.21 | 0.34 | 4.53 | 0.00 | 6.07 | 0.28 | 4.02 | 0.00 |
| TNM stage ΙΙΙ | 8.11 | 0.40 | 5.32 | 0.00 | 6.85 | 0.34 | 4.71 | 0.00 |
| Health literacy | -0.22 | -0.19 | -2.84 | 0.01 | ||||
| Family avoidance of communication about cancer | 0.055 | 0.17 | 2.52 | 0.01 | ||||
| Powerful-others HLC | -0.13 | -0.11 | -1.64 | 0.01 | ||||
| R 2 | 0.19*** | 0.31*** | ||||||
| Adjusted R2 | 0.17*** | 0.28*** | ||||||
| F | 7.99 | 9.80 | ||||||
Note: *P < 0.05; **P < 0.01; ***P < 0.001
The SEM of factors influencing FoP among spouses of older cancer patients
The Harman single-factor test method [32] was used to assess common method bias. The results showed eight factors with eigenvalues greater than 1, and the first factor explained 24.88% of the variance, which is below the critical threshold of 40%, indicating no significant common method bias in this study’s data.
Based on the multiple linear regression results, the following variables were incorporated into the SEM: the powerful-others HLC, family avoidance of cancer communication, health literacy (including its health information literacy and communication literacy dimensions), and FoP with its physical health and social-family function dimensions. The powerful-others HLC was set as the exogenous variable; family avoidance of cancer communication and health literacy served as mediators; and FoP was the endogenous variable. According to the hypothetical model modeling discovery, the model fitting degree had reached a saturated state, so we adjusted the model. The final SEM (Fig. 2), estimated using the maximum likelihood method. The final model revealed that, HLC exerted a small but significant direct negative effect on FoP (β = -0.21, P < 0.001). However, family avoidance of communication about cancer and health literacy mediated the relationship between HLC and FoP. Family avoidance of communication about cancer positively influenced FoP(β = 0.24, P < 0.01), while health literacy negatively influenced FoP༈β = -0.21, P < 0.01༉. As shown in Table 4, all absolute fit indices and incremental fit indices of the model met the threshold criteria, indicating good fit of the constructed SEM and confirming the robustness of the model [33, 34].
Fig. 2.
Final structural equation model. Note: 
indicates Observed Variables; 
indicates Latent Variables
Table 4.
Results of model fit indices
| Fit indices | Cutoff criteria | Value | P | |
|---|---|---|---|---|
| Absolute fit indices | χ 2 /df | <5.000 | 1.115 | 0.350 |
| RMSEA | < 0.080 | 0.023 | ||
| AGFI | > 0.900 | 0.964 | ||
| Incremental fit indices | CFI | > 0.900 | 0.998 | |
| NFI | > 0.900 | 0.985 | ||
| IFI | > 0.900 | 0.998 | ||
| TLI | > 0.900 | 0.996 | ||
Mediation analysis of factors influencing FoP among spouses of older cancer patients
To further clarify the relationships among factors influencing FoP in spouses of older cancer patients, we conducted mediation analysis using the Bootstrap method with 5,000 iterations. Family avoidance of communication about cancer demonstrated a significant indirect effect on Powerful-others HLC and FoP: (95% CI [-0.15, -0.03], P < 0.001), indirect effect was − 0.08, accounting for 25.00% of the total effect (-0.32). Health literacy demonstrated a significant indirect effect on Powerful-others HLC and FoP:༈95% CI [-0.15, -0.01], P < 0.001༉, indirect effect was − 0.09, accounting for 28.13% of the total effect (-0.32). The results indicated that the parallel mediation hypothesis was supported. Detailed results were presented in Table 5.
Table 5.
Mediation effect test results
| Effect relationship | Effect size | Proportion of relative effects (%) | 95% CI | P |
|---|---|---|---|---|
| Total effect | −0.32 | 100 | −0.47 - −0.17 | <0.001 |
| Direct effect | −0.15 | 46.87 | −0.31 - −0.01 | <0.05 |
| Indirect effect | −0.17 | 53.13 | −0.26 −- 0.09 | <0.001 |
| Powerful-others HLC→Family avoidance of communication about cancer→ FoP | −0.08 | 25.00 | −0.15 - −0.03 | <0.001 |
|
Powerful-others HLC→Health literacy → FoP |
−0.09 | 28.13 | −0.15 - −0.01 | <0.001 |
Discussion
This study aimed to examine the level of FoP among older spousal caregivers of cancer patients; building on the Family Model of Predictors of Fear of Cancer Recurrence, this study examined the effects of individual factors (HLC, health literacy) and family-level factors (family avoidance of cancer communication) on FoP. The average FoP score was 35.21 ± 9.79, which was broadly consistent with the previous research score of 34.95 ± 11.67 [35]. People with high FoP often experience depression, sleep disturbances, concentration difficulties, and anxiety [36, 37]. Recent studies have increasingly focused on the FoP of cancer patients’ spouses [38, 39] and some have demonstrated a significant correlation between caregiver age and FoP [40]. However, older spousal caregivers remain understudied. This study explored potential mechanisms influencing FoP from multiple perspectives among this group. The results indicated that family avoidance of cancer communication was positively associated with FoP, while powerful-others HLC and health literacy were negatively associated. These findings provide valuable insights into reducing FoP in older spousal caregivers by emphasizing the roles of powerful-others HLC, family communication avoidance, health literacy, and related factors.
As a critical factor influencing life expectancy, cancer recurrence and metastasis remain unconquered [1], making disease progression a persistent concern for both cancer patients and their caregivers. This study revealed that the level of FoP among older spousal caregivers of cancer patients exceeded the normal threshold, indicating dysfunction in FoP (35.21 ± 9.79 ≥ 34), broadly consistent with previous research findings [8, 35]. Elevated FoP in older spousal caregivers adversely affects their physical and mental health, diminishes caregiving capacity, and negatively impacts both their own and the patients’ quality of life [35, 41]. These results highlight that the FoP status among older spousal caregivers is concerning and calls for urgent attention and effective intervention from healthcare professionals.
Moreover, this study identified several sociodemographic factors associated with FoP among older spousal caregivers, including residence ( of the older spousal caregivers) self-care ability, and TNM staging (of the patients), had further expanded the spectrum of influencing factors for the FoP. Although no significant relationship was found between age and FoP, one possible explanation is that all participants were aged over 60, resulting in a limited age range. Older spousal caregivers living in towns exhibited higher FoP levels than those residing in cities. This difference may stem from greater financial pressures faced by town residents, such as insurance challenges, and the frequent need to travel to tertiary hospitals, which are typically located in cities, to care for patients. Additionally, TNM staging showed a significant effect: caregivers of patients at TNM stage I reported the lowest FoP levels. This may be attributed to the medical characteristics of stage I cancer, which generally has a low recurrence rate [42], thereby alleviating FoP among older spousal caregivers.
The HLC measurements indicated that older spousal caregivers tend to exhibit PHLC, meaning they believe their partners’ health depends on the guidance and care of authoritative figures. This finding aligns with previous research showing that older adults are more inclined to trust powerful others [43]. In this study, the mean PHLC score was 22.76 ± 8.32, which is higher than the 18.2 ± 4.6 reported in prior studies [44]. Possible reasons include the different patient populations that caregivers assist, the variety of cancer treatment methods (such as surgery, chemoradiotherapy, targeted therapy, immunotherapy, etc.) and the fact that treatment approaches vary depending on the cancer site and stage. Consequently, caregivers need to continuously consult healthcare professionals for support. Furthermore, correlation analysis confirmed that HLC, especially PHLC, was negatively correlated with FoP. Specifically, the stronger the older spousal caregivers’ perception that control over health events lies with external authorities, the lower their FoP tends to be. This greater trust in healthcare professionals suggests that interventions by these professionals can more effectively change adverse perceptions, reduce negative emotions, and ultimately decrease FoP among older spousal caregivers.
In this study, PHLC was found to have a significantly negative effect on family avoidance of communication about cancer, while family avoidance of communication about cancer was positively associated with FoP among older spousal caregivers. Furthermore, the mediating role of family avoidance of communication about cancer between PHLC and FoP was demonstrated. These findings suggest that older spousal caregivers with stronger PHLC are more willing to discuss cancer-related issues, which may reduce their FoP. Effective communication has been identified as a crucial factor in managing family tension and regulating coping strategies [45], especially for older spousal caregivers. Therefore, interventions that promote PHLC among older spousal caregivers are essential, enabling them to communicate with healthcare workers, overcome communication barriers, and ultimately alleviate their FoP. Previous studies have shown that caregiver-centered communication approaches can enhance family members’ willingness to participate in cancer treatment, care, communication, and decision-making processes [18].
In the present study, health literacy among older spousal caregivers was found to be inadequate, consistent with previous reports [46]. Furthermore, health literacy was positively influenced by PHLC but negatively predicted FoP in older spousal caregivers. Moreover, the mediating role of health literacy in the relationship between PHLC and FoP was confirmed. This may be explained by the fact that older spousal caregivers with stronger PHLC tend to trust health care professionals more, which encourages them to follow medical advice and improves their health promotion behavior [47]. Consequently, this leads to better acceptance of cancer-related information, reduces psychological stress, and enhances their physical health.
The present study further confirmed that the relationship between PHLC and FoP was serially mediated by family avoidance of communication about cancer and health literacy. Individuals with high PHLC tended to attribute their health status to powerful others, demonstrated good compliance, were less likely to avoid or minimize discussions related to cancer, accessed more health information, and applied it to themselves and patients, thereby reducing their fear of cancer progression. With advances in cancer treatment and improved survival rates [48], patients face prolonged treatment and recovery periods, during which caregivers also undertake extended caregiving. Based on these findings, it is crucial to empower older spousal caregivers with PHLC during this long battle against cancer, fostering their trust in health care professionals and encouraging open communication about cancer to better understand the feelings and thoughts of both parties. Health care professionals should also be attentive to the needs of older spousal caregivers and provide timely guidance and health information.
Implications for practice and research
This study explored the multidimensional factors (individual and family) influencing FoP among older spousal caregivers of cancer patients, providing a theoretical basis for developing subsequent clinical interventions. The findings revealed that fostering older spousal caregivers’ trust in doctors, enhancing disease-related communication within families, promoting professional communication between healthcare providers and family caregivers, and improving health literacy can effectively reduce FoP in this population. Based on the theoretical framework of this study, clinical practice should focus on creating enabling environments that encourage and facilitate communication between older spousal caregivers of cancer patients, medical staff, and patients themselves. To enhance health education for spouses, multimodal approaches should be adopted beyond traditional paper-based brochures and health lectures. Leveraging internet technologies and AI-assisted tools, the development of mobile health technologies— such as mHealth applications, dedicated websites, and virtual reality platforms—can enable remote information delivery. These measures can enhance spouses’ awareness of the disease, deepen their understanding of the patient’s experiences and needs, thereby alleviating their FoP.
Limitations
Within the cultural context of traditional Chinese familial structures, older patients frequently delegate medical and economic decision-making authority to their adult children. Core medical information transmission may bypass spousal communication, occurring directly through intergenerational channels, thereby constraining communication between spouses. Concurrently, caregiver spouses may exhibit attenuated awareness of patients’ fear of cancer progression due to their exclusion from decision-making processes. Consequently, the findings of this study require further empirical validation across diverse cultural contexts. This study employed a cross-sectional design, which limited the ability to infer causal relationships between influencing factors and FoP. Future research should adopt prospective longitudinal designs to track the development and changes of these variables over time.
Conclusion
In summary, our study demonstrated that older spousal caregivers of cancer patients have a high level of fear of disease progression. Findings indicate that nursing interventions designed to address this issue should focus on fostering communication with medical staff, promoting open family communication about cancer, and enhancing their cancer awareness through multiple channels.
Acknowledgements
The authors would like to thank all the older spousal caregivers of cancer patients who participated in the study. We also extend our gratitude to Dr. Chen Feifei for her guidance in the statistical analysis.
Author contributions
Ruirui Qiu, Yuli Li, and Junhua Sun participated in the study design. Ruirui Qiu, Qingyan Zhou, and Chunyu Ren collected the patient data. Yuli Li and Ruirui Qiu performed the data analysis. Ye Lan provided instructions on how to translate this article. The original manuscript was drafted by Ruirui Qiu and Yaoyi Pan and reviewed by Yuli Li, Ye Lan, Qingyan Zhou, Chunyu Ren, and Junhua Sun. All authors approve the final manuscript as submitted and agree to be responsible for all aspects of the work.
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Data availability
The datasets used during the current study are available from the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
The study protocol was approved by the Ethics Committee of the Second Qilu Hospital of Shandong University (approval number: KYLL2024468). All procedures conformed to the ethical standards of the responsible committee on human experimentation and the Helsinki Declaration. Data were collected only after obtaining informed and written consent from each participant.
Consent for publication
Informed consent was obtained from all individual participants included in the study. The participants consented to the publication of the data for research purposes, with the understanding that all data would be presented anonymously.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
First author: Ruirui Qiu.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The datasets used during the current study are available from the corresponding author on reasonable request.