Current status and factors influencing readiness among primary caregivers of colorectal cancer patients

Abstract

BACKGROUND

Colorectal cancer (CRC) is a common digestive malignant tumor with a high incidence and mortality. Treatments mainly include surgery combined with radiotherapy and chemotherapy, and some postoperative patients need stoma care, which impairs their quality of life. Caregiver readiness involves addressing patients’ physical and emotional needs and improving patients’ well-being, yet relevant research on CRC primary caregivers remains limited.

AIM

To explore the readiness of primary caregivers of CRC patients and analyze the related influencing factors.

METHODS

A convenience sampling method was used to select 300 primary caregivers of CRC patients from the Department of Colorectal Surgery in a tertiary hospital in Zhejiang Province between January and October 2023. The study utilized a general information questionnaire, the Caregiver Preparedness Scale, the Family Caregiver Task Inventory, and the Self-Rating Anxiety Scale for data collection. Univariate analysis and multiple stepwise linear regression analysis were performed to investigate the factors influencing caregiver readiness.

RESULTS

A total of 284 primary caregivers of CRC patients were included. The average score on the Caregiver Preparedness Scale was 18.93 ± 7.01, and 31.54 ± 24.25 on the Family Caregiver Task Inventory, which both indicated a moderate level. Factors influencing caregiver readiness included patient-related variables such as age, educational level, medical expense coverage, and disease progression, as well as caregiver-related variables such as marital status, place of residence, caregiving duration, understanding of the disease, emotional relationship with the patient, family caregiving ability, and anxiety levels.

CONCLUSION

The readiness of primary caregivers of CRC patients needs improvement. Healthcare professionals should design personalized and comprehensive nursing intervention programs targeting these influencing factors to enhance patient quality of life.

Key Words: Colorectal cancer; Caregiver readiness; Family Caregiving Capacity; Anxiety; Influencing factor analysis

Core Tip: This study enrolled 284 primary caregivers of colorectal cancer patients via convenience sampling. Relevant scales and questionnaires were used for data collection, with univariate analysis and multivariate stepwise linear regression performed. Results showed moderate caregiving readiness (18.93 ± 7.01) and family care ability (31.54 ± 24.25). Influencing factors included patients’ age, education, and caregivers’ marital status, caregiving duration, anxiety level.

INTRODUCTION

Colorectal cancer (CRC) is a common malignant tumor of the digestive system, ranking third in incidence and second in mortality among all cancers globally, accounting for 9.6% of all cancer cases and 9.3% of cancer-related deaths[1,2]. Current clinical treatments for CRC mainly involve surgery combined with radiotherapy and chemotherapy[3]. However, some postoperative patients require stoma care, which can lead to complications such as urgency in defecation, stress urinary incontinence, and fatigue, significantly affecting their quality of life[4].

Caregiver readiness refers to caregivers’ perceived level of stress from all aspects when preparing to implement care tasks, or their perceived preparedness to meet patients’ physical and psychological needs, including the preparedness to provide care services and address emergencies[5]. It involves preparing to meet the physical and emotional needs of the patient, including providing psychological, daily living, and emotional support, and encompasses caregivers’ perception of their ability to care for these needs, arrange services, and handle emergencies[6]. The readiness of primary caregivers directly affects the quality of life and psychological well-being of patients during treatment[7]. Actively assessing caregiver readiness and implementing targeted interventions can help healthcare professionals guide family members in improving their caregiving capabilities. This not only reduces caregiver burden and enhances family caregiving capacity but also effectively lowers the incidence of patient complications and hospital readmissions[8].

Currently, there is limited research on the readiness of primary caregivers of CRC patients before initiating caregiving, both domestically and internationally. Therefore, under the framework of caregiving transition, this study focuses on primary caregivers of CRC patients, investigating their level of readiness and its influencing factors[9]. This study aims to provide a theoretical basis and reference for clinical medical staff to educate primary caregivers of CRC patients, thereby improving the prognosis and quality of life of these patients.

MATERIALS AND METHODS

Study subjects

A convenience sampling method was used to select 300 primary caregivers of CRC patients from the Department of Colorectal Surgery at a tertiary hospital in Zhejiang Province between January and October 2023. Inclusion criteria for patients: (1) Diagnosed with CRC based on colonoscopy pathology reports and the “Chinese Guidelines for the Diagnosis and Treatment of CRC (2023 Edition)”; (2) Underwent radical colorectal surgery; and (3) Age ≥ 18 years. Exclusion criteria for patients: (1) History of mental illness or currently taking antipsychotic medications; and (2) Concurrent history of other malignant tumors. Inclusion criteria for primary caregivers: (1) Family member of patient; (2) Age ≥ 18 years, recognized by the patient’s authorized representative; (3) Responsible for primary caregiving role during the patient’s hospitalization and after discharge (≥ 4 hours/day); and (4) Provided informed consent and voluntarily participated in the study. Exclusion criteria for primary caregivers: (1) Caregiver was replaced for special reasons; (2) Communication barriers or inability to complete the questionnaire; and (3) Participation in other research studies. The sample size was calculated using a rough estimation method. With 21 variables in the study, the required sample size was determined to be 5-10 times the number of variables[10]. Considering a 20% increase to account for potential errors, the sample size range was determined to be 162-324. Ultimately, 284 participants were included in the study based on actual conditions. The study received approval from the hospital’s Ethics Committee, approval No. 20221213-21.

Research tools

A self-developed questionnaire was designed based on a review of domestic and international literature. It included demographic and clinical information such as age, gender, marital status, and education level of both patients and caregivers. Other details collected included: The patient's disease duration; history of chronic illnesses; the caregiver’s relationship with the patient; place of residence; physical condition; presence of chronic diseases; family income; caregiving experience and time; understanding of the disease; and emotional relationship with the patient.

Caregiver Preparedness Scale (CPS), developed by Archbold et al[10] and translated and revised by Wu et al[11], was used to assess the readiness of primary caregivers of CRC patients. This scale consisted of eight items, each scored on a 5-point Likert scale, with a total score ranging from 0 to 32. Higher scores indicated greater caregiver preparedness. The scale has demonstrated good reliability and validity, with a Cronbach’s α coefficient of 0.925, meeting validity requirements.

The Family Caregiver Task Inventory, developed by Clark et al[12] and revised by Lee and Mok[13], was used to evaluate the caregiving ability of the study participants. The revised scale consisted of 25 items, focusing on areas such as adapting to caregiving roles and adjusting to personal and caregiving needs. Each item was scored on a 3-point Likert scale, with responses ranging from “not difficult” (0) to “very difficult” (2). The total score ranged from 0 to 50, with higher scores indicating greater difficulty in caregiving tasks and thus lower caregiving ability. The Cronbach’s α coefficient of the scale is 0.930, and its content validity index is 0.760.

The Self-Rating Anxiety Scale, developed by Zung[14], was used to assess the anxiety levels of primary caregivers of CRC patients. The scale included one dimension with 20 items; of which 15 were positively scored and five were reverse scored. Each item was rated using a 4-point Likert scale, and the raw score was calculated by summing the item scores. The raw score was multiplied by 1.25 to obtain the standard score. According to Chinese norms, a score < 50 indicated no anxiety, 50-59 mild anxiety, 60-69 moderate anxiety, and > 69 severe anxiety.

Data collection and quality control

A preliminary investigation was conducted among 20 primary caregivers of hospitalized CRC patients at a tertiary hospital in Zhejiang Province. This pre-survey tested the feasibility of the questionnaire and the data collection methods, leading to revisions based on the results. Prior to the formal survey, investigators were trained to ensure consistency in the survey methods. Consent was obtained from all participants, who gave signed informed consent after being provided with detailed explanations of the purpose and content of the study. Participants independently completed the questionnaire after fully understanding its instructions. No interventions were made during the completion process, to ensure authenticity. For participants unable to complete the questionnaire on their own, investigators read the questions aloud and recorded answers based on the participants’ responses. Questionnaires were collected on-site, and all completed forms were thoroughly checked to ensure accuracy.

Statistical analysis

Data were analyzed using SPSS 25.0 statistical software. Measurement data conforming to a normal distribution were expressed as mean ± SD. Group comparisons were performed using independent sample t tests and one-way analysis of variance. Numerical data were presented as frequencies and percentages. Pearson or Spearman correlation analyses were used to explore the relationships among family caregiving ability, anxiety, and caregiver preparedness. Multiple linear regression analysis was conducted to identify factors influencing caregiver preparedness for CRC patients. P < 0.05 was considered statistically significant.

RESULTS

General information of patients and survey participants

A total of 300 questionnaires were distributed, and 284 valid questionnaires were returned, resulting in an effective response rate of 94.7%. The age of the primary caregivers ranged from 19 years to 77 years, with an average age of 48.62 ± 12.74 years. Other general information is shown in Table 1.

Table 1 General information of patients and survey participants and results of univariate analysis on caregiver preparedness (n = 284), mean ± SD.

Variable	Caregiver preparedness	t/F	P value
Patient age		4.2111	0.016a
18-50	21.08 ± 5.74
51-70	19.86 ± 5.98
> 70	18.07 ± 7.47
Patient gender		-1.1772	0.240
Male	18.47 ± 6.51
Female	19.45 ± 7.54
Patient marital status		12.1301	0.000b
Married	18.45 ± 6.87
Widowed	27.50 ± 4.81
Single	26.50 ± 2.67
Patient’s educational level		2.8761	0.023a
Elementary school or below	18.69 ± 7.38
Junior high school	17.78 ± 7.29
High school/secondary vocational school	21.00 ± 5.47
Associate degree	22.00 ± 1.48
Bachelor’s degree or above	22.00 ± 5.56
Patient’s medical expense payment situation		2.2252	0.027a
Partial reimbursement	17.97 ± 7.71
Majority reimbursement	19.81 ± 6.20
Patient’s disease course		4.4261	0.002a
< 1 month	19.69 ± 6.93
1-3 months	21.57 ± 7.63
3-6 months	18.13 ± 6.59
6-12 months	16.82 ± 6.45
> 1 year	16.75 ± 6.15
Patient’s previous chronic diseases		3.9971	0.019a
Single	18.91 ± 7.48
Multiple	16.45 ± 7.11
None	19.96 ± 6.14
Primary caregiver’s age		2.1421	0.119
18-50 years	19.62 ± 7.91
51-70 years	18.34 ± 5.79
> 70 years	15.5 ± 5.88
Primary caregiver’s gender		0.3502	0.727
Male	19.10 ± 7.33
Female	18.80 ± 6.79
Relationship between primary caregiver and patient		12.7701	0.000b
Spouse	19.30 ± 5.62
Children	21.67 ± 7.35
Daughter-in-law or son-in-law	19.88 ± 7.64
Parent	24.33 ± 3.85
Other relatives	14.50 ± 7.64
Friend	8.50 ± 0.89
Marital status of primary caregiver		3.8081	0.023a
Married	19.25 ± 7.13
Divorced	19.00 ± 0.00
Single	14.80 ± 4.56
Caregiver’s education level		8.6841	0.000b
Elementary school or below	15.31 ± 4.43
Junior high school	19.92 ± 6.93
High school/secondary vocational school	20.32 ± 6.76
Associate degree	21.00 ± 8.89
Bachelor’s degree or above	14.20 ± 3.97
Caregiver’s residence location		3.6391	0.013a
Urban area	21.50 ± 6.15
County	17.50 ± 7.41
Town	18.22 ± 6.86
Rural area	18.80 ± 7.07
Self-reported physical health status of primary caregiver		18.7991	0.000b
Good	19.67 ± 8.42
Moderate	20.93 ± 6.02
Poor	15.05 ± 4.50
Primary caregiver’s chronic disease history		2.1842	0.030a
No	19.30 ± 7.26
Yes	16.70 ± 4.75
Per capita monthly income of family		4.2511	0.015a
< 424 dollars	16.57 ± 6.71
424-707 dollars	18.59 ± 6.90
> 707 dollars	20.72 ± 7.11
Caregiving experience of primary caregiver		6.1841	0.002a
Never	18.45 ± 6.54
Had one experience	18.17 ± 7.99
Had several experiences	22.27 ± 4.09
Duration of caregiving by main caregiver		35.6631	0.000b
4-8 hours	15.57 ± 6.24
9-12 hours	18.44 ± 6.32
> 12 hours	22.70 ± 6.31
No. of people assisting with caregiving		1.3111	0.271
0	18.45 ± 6.37
1	18.60 ± 7.73
≥ 2	20.00 ± 7.19
Caregiver’s knowledge of the disease		13.8301	0.000b
Less	17.95 ± 6.80
Moderate	22.40 ± 7.91
More	23.88 ± 5.07
Caregiver-patient emotional bond		27.5921	0.000b
Not intimate	11.67 ± 4.67
A little intimate	17.17 ± 5.68
Intimate	21.02 ± 7.03

^aP < 0.05.

^bP < 0.01.

¹One-way analysis of variance with Tukey’s post-hoc test.

²Independent samples t-test.

Current status of caregiver preparedness for CRC patients

The CPS consisted of eight items, with the total score being 18.93 ± 7.01. The highest-scoring statement was, “Overall, you feel prepared to care for the patient”, with a score of 2.52 ± 1.01. The lowest-scoring statement was, “You feel prepared to access help and informational resources from the healthcare system”, with a score of 2.18 ± 1.00. Detailed scores for each item are shown in Table 2.

Table 2 Total Caregiver Preparedness Scale score and itemized scores for caregiver preparedness for colorectal cancer patients (n = 284), mean ± SD.

Item	Minimum	Maximum	Score
CPS total points	0	32	18.93 ± 7.01
You are prepared to care for the patient’s physical needs	0	4	2.38 ± 1.04
You are prepared to care for the patient’s emotional needs	0	4	2.41 ± 1.03
You are prepared to understand the patient’s needs and develop relevant services for them	0	4	2.27 ± 1.01
You are prepared to cope with the stress that caregiving for the patient may cause	0	4	2.39 ± 1.02
You are prepared to provide care for the patient that is satisfactory to both you and the patient	0	4	2.51 ± 1.01
You are prepared to respond to and handle any emergencies that may arise with the patient	0	4	2.27 ± 1.06
You are prepared to seek help and resources from the healthcare system when necessary	0	4	2.18 ± 1.00
Overall, you are prepared to care for the patient	0	4	2.52 ± 1.01

CPS: Caregiver Preparedness Scale.

Family caregiving capacity and anxiety scores of primary caregivers of CRC patients

The Family Caregiver Task Inventory (FCTI) score for primary caregivers of CRC patients was 31.54 ± 24.25. Among the dimensions of FCTI (difficulty of caregiving tasks), the scores from highest to lowest were as follows: Adjusting personal and caregiving needs 7.42 ± 1.16; managing personal emotional needs 7.18 ± 2.60; coping and providing assistance 6.04 ± 1.03. Adapting to the caregiving role 5.99 ± 2.90; evaluating family and community resources 4.90 ± 1.29; and Self-Rating Anxiety score for CRC caregivers was 39.38 ± 9.88. Caregivers in the normal anxiety range scored 35.69 ± 6.43; those with mild anxiety scored 54.90 ± 2.03; and those with moderate anxiety scored 67.50 ± 0.0.

Univariate analysis of caregiver preparedness of CRC patients

Univariate analysis revealed that caregiver preparedness was significantly influenced by the following factors. Patient-related factors: Age; marital status; education level; medical expense payment method; disease course; and history of chronic illness. Caregiver-related factors: Relationship with the patient; marital status; education level; place of residence; employment status; self-perceived physical condition; caregiving experience; caregiving hours; and emotional relationship with the patient.

Correlation analysis between family caregiving capacity, anxiety, and caregiver preparedness

The CPS total score of CRC caregivers was negatively correlated with family caregiving capacity and its dimensions (P < 0.01). The correlation coefficient between CPS and total family caregiving capacity was -0.836. Correlation coefficients between CPS and FCTI dimensions were as follows: Adapting to the caregiving role: r = -0.566; coping and providing assistance: r = -0.630; managing personal emotional needs: r = -0.719; evaluating family and community resources: r = -0.569; adjusting personal and caregiving needs: r = -0.716. The CPS item scores were also negatively correlated with family caregiving capacity and its dimensions (P < 0.01). The CPS total score and individual item scores were negatively correlated with anxiety levels (P < 0.01). The correlation coefficient between CPS and anxiety levels was -0.376. The correlation coefficients between CPS items and anxiety levels ranged from -0.218 to -0.405.

Multiple linear regression analysis of caregiver preparedness for CRC patients

Using caregiver preparedness as the dependent variable, variables that passed significance testing, along with family caregiving capacity and anxiety, were included as independent variables in the regression model. Multiple linear regression analysis indicated that the following factors influenced the caregiver preparedness of primary caregivers for CRC patients. Patient-related factors: Age; marital status; education level; method of medical expense payment; and disease duration. Caregiver-related factors: Relationship with the patient; marital status; education level; place of residence; per capita monthly income; caregiving hours; understanding of the disease; emotional relationship with the patient; anxiety levels; and caregiving capacity (Table 3).

Table 3 Multiple linear regression analysis of factors influencing caregiver preparedness for colorectal cancer patients (n = 284).

Characteristics	Unstandardized coefficient B	Standard error	Standardized coefficient β	t	P value	VIF
Constant	34.624	2.137	-	16.200	0.000	-
Patient
Age	-0.875	0.430	-0.076	-2.032	0.043	2.732
Widowed	3.926	1.131	0.093	3.472	0.001	1.412
Single	-6.891	1.926	-0.163	-3.578	0.000	4.097
Educational level	0.919	0.260	0.143	3.536	0.000	3.256
Medical expense coverage	-1.663	0.432	-0.119	-3.849	0.000	1.880
Disease duration	-0.451	0.145	-0.088	-3.121	0.002	1.561
Primary caregiver
Offspring	-2.030	0.633	-0.137	-3.207	0.002	3.615
Parent	5.033	1.485	0.145	3.388	0.001	3.603
Friend	-2.149	0.997	-0.071	-2.156	0.032	2.131
Divorced	4.077	1.508	0.069	2.704	0.007	1.274
Single	-1.697	0.768	-0.062	-2.210	0.028	1.557
Educational level	0.747	0.226	0.122	3.303	0.001	2.711
Rural areas	-1.533	0.545	-0.105	-2.814	0.005	2.733
Per capita monthly income	0.680	0.281	0.058	2.417	0.016	1.122
Caregiving duration	1.124	0.225	0.141	4.988	0.000	1.588
Level of disease knowledge	-1.441	0.495	-0.088	-2.912	0.004	1.791
Emotional relationship with patient	1.392	0.356	0.129	3.909	0.000	2.143
Anxiety	-0.066	0.022	-0.093	-2.939	0.004	1.984
Care capacity	-0.462	-0.020	-0.723	-23.670	0.000	1.845

VIF: Variance inflation facto.

DISCUSSION

Research has shown[15] that primary caregivers play a crucial role throughout disease progression and postoperative recovery of patients. When caregivers possess professional caregiving knowledge and skills, their level of preparedness is higher, enabling them to effectively alleviate patients’ psychological stress, significantly reduce anxiety levels, enhance recovery outcomes, and improve patients’ overall prognosis. In this study, the total CPS score of primary caregivers for CRC patients was 18.93 ± 7.01, indicating a moderate level of preparedness[16,17]. This suggests that when facing a relative's cancer diagnosis, caregivers may lack comprehensive preparedness in physical and psychological caregiving.

This insufficiency might be due to the severity of CRC and the complexity of stoma care, which make postoperative recovery and caregiving particularly challenging for caregivers. CRC patients often experience severe postoperative symptoms and have high supportive care needs[18,19]. Compared to professional healthcare providers, caregivers must adjust their own mental states and learn new caregiving methods based on changes in the patient’s condition. This uncertainty about the future can lead to a lack of confidence in caregiving, thereby affecting their preparedness[20].

Comparing the average scores of CPS items reveals that “You are prepared to seek help and access information resources from the healthcare system” and “You are prepared to handle and respond to emergency situations involving the patient” scored the lowest. This indicates that caregivers in this study were primarily focused on current disease management, lacking long-term planning and preparation, particularly in emergency response training or preparedness[21].

Therefore, healthcare professionals should integrate pathways for providing disease-related information resources into intervention plans as early as possible[22]. This would help caregivers address issues arising during home care, familiarize themselves with accessible and timely medical resources, and effectively handle problems that arise. Additionally, training programs should aim to improve caregivers’ abilities to identify and manage common postoperative issues in CRC patients, especially in home care settings[23,24].

There was a significant negative correlation between CPS scores and family caregiving ability as well as its dimensions. This may be because caregivers with higher caregiving ability typically possess a greater understanding of the disease and caregiving knowledge, enabling them to perceive caregiving tasks more effectively[25]. As a result, they can better address patients’ physiological and psychological needs and respond effectively to emergencies[26].

CPS item scores were significantly negatively correlated with caregiving ability and its dimensions. Among the eight CPS items, preparedness to meet patients' physical needs showed the highest correlation with caregiving ability, while preparedness to meet emotional needs showed the lowest correlation. This may be because physical needs are fundamental and quantifiable, directly tied to specific caregiving skills and knowledge. In contrast, emotional needs are more complex and subjective, influenced by various factors[27,28]. Meeting physical needs, such as dietary requirements, hygiene, and excretion, is vital as they directly impact patients’ health and comfort[29]. Therefore, preparedness in this area reflects caregivers’ basic caregiving skills and their attention to patients’ fundamental requirements.

There was a negative correlation between CPS scores and anxiety levels, indicating that higher levels of caregiver anxiety are associated with lower preparedness. This finding is consistent with the conclusions of Henriksson and Årestedt[30]. This study showed that 18.3% of caregivers experienced mild to moderate anxiety.

This could be because caregivers must adapt to the transition from hospital-based to home-based care after discharge. Without guidance and support from healthcare providers, caregivers often feel anxious and uncertain[31]. Postoperatively, CRC patients depend heavily on caregivers for daily living, and the caregiving tasks are not only complex but also highly demanding. If caregivers lack adequate preparedness, the heavy caregiving burden may lead to heightened anxiety.

To address this issue, enhancing caregivers’ preparedness can alleviate anxiety, and targeted psychological interventions can foster a positive caregiving mindset, ultimately improving care quality[19]. Beyond this correlation, specific strategies are needed to improve clinical translation for this anxious subgroup. For screening, validated psychological assessment tools should be integrated into the post-discharge follow-up of CRC patient caregivers to facilitate early identification. For interventions, tailored approaches (structured counseling, peer support, skill training combined with stress management) should be adopted to address their mental health needs while aligning with the goal of enhancing preparedness to alleviate anxiety.

This study yielded two interesting findings: First, primary caregivers of widowed patients exhibited significantly higher caregiving readiness than those of married patients, contradicting the results of Wang et al[32]; second, child caregivers had lower caregiving readiness than spousal caregivers, which aligns with the conclusions of Henriksson and Årestedt[30].

Prior research has generally posited that caregivers of married patients tend to demonstrate relatively higher caregiving readiness. The opposite trend observed herein may be ascribed to the synergistic effects of multiple factors. For married patients, spousal caregivers often faced emotional burden and role conflicts stemming from disease progression (e.g., strained relationships and communication barriers), while simultaneously fulfilling the roles of partner and parent, factors that impaired their ability to focus fully on caregiving tasks. When adult children served as primary caregivers for married patients, they typically relied on the patients’ spouses for care support, which consequently reduced their own caregiving preparedness. In contrast, primary caregivers of widowed patients (mostly adult children or parents) were the sole providers of emotional support and daily care. This singular responsibility motivated them to prioritize patients’ needs and proactively acquire nursing knowledge and skills, thereby enhancing their overall caregiving readiness. Further analysis revealed that child caregivers’ low preparedness stemmed from competing obligations (i.e., work, family responsibilities, and patient care) that dissipated their energy. Despite their deep emotional bonds with parents, adult children’s daily interactions and emotional connections are less intimate than those between spouses. The confluence of these pressures ultimately resulted in inadequate psychological and practical caregiving preparedness in this group.

CONCLUSION

The preparedness of primary caregivers for CRC patients was found to be at a moderate level, with several influencing factors identified. Caregivers' preparedness significantly affects the rehabilitation and treatment outcomes of CRC patients. It is recommended to design personalized, comprehensive caregiving plans that address these influencing factors to improve patients’ quality of life. The data collection method, wherein investigators administered questionnaires verbally to caregivers who could not complete them independently, may have introduced social desirability bias, thus posing a potential threat to internal validity. Coupled with the convenience sampling strategy employed, this limitation also restricts the generalizability of the study’s outcomes. In addition, the participants in this study were limited to a tertiary hospital in Hangzhou. Future studies could consider conducting multicenter, large-scale random sample surveys across different regions and healthcare institutions to explore the factors influencing the preparedness of CRC caregivers more comprehensively.

ACKNOWLEDGEMENTS

The authors would like to thank Jian-Fen Qin for the efforts made in designing the research.