Abstract
In this study, we analyzed the current situation and influencing factors of the care needs of family caregivers of patients with bladder cancer undergoing urostomy and provided an evidence-based framework for the formulation of intervention programs. Family caregivers of patients with bladder cancer undergoing urostomy were investigated from January 2018 to June 2023 in seven third-class first-class hospitals using the Care Demands Scale developed by our group. In this study, the care needs of family caregivers were evaluated on the day before discharge, 1 month, 3 months and 6 months after discharge.To analyze the data, a t-test or F-test, one-way ANOVA, a stochastic forest model, one-way analysis, and multifactor linear regression were used. The top five needs were: mastering urostomy home care skills (e.g., bag/catheter change); receiving timely post-discharge professional guidance; learning peristomal skin assessment; improving sleep quality; and alleviating negative emotions. Univariate and multivariate analyses identified gender, residence, anxiety, depression, number of co-caregivers, education level, employment status, caregiver type, age, and marital status as key factors influencing care needs (P < 0.05). The care needs of family caregivers of patients with bladder cancer undergoing urostomy were extremely significant. The types of family caregivers, along with gender, age, length of care, working status and income, education level, and marital status, were the key factors affecting the care needs of family caregivers of ostomy patients. The above factors suggested that it is very important to formulate personalized intervention programs for family caregivers of patients with bladder cancer undergoing urostomy.
Supplementary Information
The online version contains supplementary material available at 10.1038/s41598-025-34339-y.
Keywords: Care needs, Family caregivers, Bladder cancer, Urostomy
Subject terms: Cancer, Diseases, Health care, Medical research, Oncology, Urology
Introduction
Bladder cancer is the most common malignant tumor of the urinary tract. A global cancer statistics report revealed that in 2020, there were 573,278 new cases of bladder cancer worldwide1,2. According to the prediction of the World Health Organization (WHO), the number of cases is expected to double by 20403. In China, 85,694 new cases of bladder cancer were diagnosed in 20201. Radical total cystectomy plus urinary diversion is an effective method for treating nonmuscle invasive bladder cancer. Urostomy is a way to excrete urine through the stoma after removing the patient’s part or damaged part of the urethra. Although this operation can save the lives of patients, it can also cause great problems for patients. Several studies have shown that patients who undergo urostomy are likely to face physiological, psychological, and social problems. Among them, physiological problems include pain, a decrease in libido, infection, insomnia, etc. Psychological problems include anxiety, depression, inferiority, loneliness, despair, etc. Social problems involve a reduction in social activities, the loss of job opportunities, the deterioration of relationships with partners, and a reduction in contact with relatives and friends4–6. Patients who undergo urostomy usually need the help of family caregivers after they are discharged before they can adapt to ostomy and return to normal life. Family caregivers, also known as informal caregivers, are a part of “invisible” labor groups that provide support and direct care for cancer patients. This kind of home care service has high physical, emotional, social, and economic requirements for caregivers7. They often shoulder many roles and responsibilities, such as caring for children, caring for the elderly, and participating in work8. Family caregivers help patients with daily activities and personal affairs, such as bathing, dressing, nursing wounds, managing drugs, arranging trips, and managing finances9. The family caregivers of urostomy patients may be under greater pressure than the patients, and thus, they need medical staff to help them more urgently9,10.
Family caregivers act as the key source of emotional support for patients. The emotional state of caregivers may be “contagious”, which affects the mental health of patients11,12. The supportive relationship between family caregivers and patients may help patients gain positive results in physical, social, and functional aspects, adapt to a new life, and recover gradually.
In this study, we investigated the current situation of the care needs of family caregivers using the developed and verified family caregivers’ demand assessment scale for bladder cancer patients with urostomy and analyzed the related factors that affect care needs to provide an evidence-based framework for formulating intervention plans.
Methods design
We conducted a cross-sectional study involving family caregivers of patients who underwent urostomy at 3 A hospitals in Shanxi, Henan, Xinjiang, Shanxi, Beijing, Hubei, Liaoning, and other places from January 2018 to June 2023. In this study, the care needs of family caregivers were evaluated on the day before discharge, 1 month, 3 months and 6 months after discharge.Ethical approvalwas obtained from the Ethics Committee of the First Hospital of Shanxi Medical University (approval number: K085).All methods were performed in accordance with these guidelines and regulations.
Subjects
This study included 1053 individuals, and family caregivers who met the following criteria were included in the study. The inclusion criteria were as follows: individuals were at least 18 years old; the duration of care for urostomy patients reached six months or more; the main caregiver of patients (i.e., the duration of care for patients every day was at least 8 h); caregivers and patients had kinship (such as husbands, wives, children, brothers, sisters, etc.); they had no speech impairment, and they could understand Mandarin; they signed the informed consent form. The exclusion criteria were as follows: if the caregiver was paid to take care of the patient and had an employment relationship with the patient, the caregiver was excluded; if the caregiver had cognitive dysfunction and difficulties understanding and communicating, the caregiver was also excluded; if the caregiver suffered from other serious diseases, the caregiver was not included in the study.
Survey tools
In this study, the nursing needs scale of family caregivers of patients with bladder cancer undergoing urostomy was used. The scale covers three dimensions, including the demand for disease care, the demand for physical and mental comfort, and the demand for social support, and contains 21 items. Each item is scored on a five-point Likert scale ranging from “very needed” (5 points) to “unnecessary” (1 point). The higher the score, the greater the urgency of the demand. This scale of care needs of family caregivers of urostomy patients with bladder cancer was developed by our research team based on the cultural background of China. See the annex for the specific scale.
We used a general information questionnaire designed by the research team based on the literature review. This questionnaire was used to collect information on age, gender, relationship with patients, place of residence, education level, work status, family per capita monthly income, daily care time for patients, and religious beliefs.
We administered the Hospital Anxiety and Depression Scale (HADS) to family caregivers one day before discharge, one month after discharge, three months after discharge, and six months after discharge to assess the incidence of depression and anxiety among caregivers.The Hospital Anxiety and Depression Scale (HADS) was developed by Zigmond and Snaith in 198326. The scale comprises 14 items: odd-numbered items assess depression, while even-numbered items assess anxiety. Six items are reverse-scored: one in the anxiety subscale and five in the depression subscale. Each item is rated on a 0–3 point scale. Scores of 0–7 indicate no symptoms, 8–10 suggest possible anxiety or depression symptoms, and 11–21 confirm the presence of anxiety or depression symptoms.
Data collection
This study recruited respondents in the form of posters. The researchers collected questionnaires online and offline and invited family caregivers of ostomy patients to fill out paper questionnaires. For the family caregivers of other patients, the questionnaire was completed on the platform of Questionnaires. Before the interviewee filled out the questionnaire, the researcher stated the purpose, significance, background, and other relevant information related to this study in detail and then performed a follow-up investigation after the informed consent of the interviewee was obtained.
Quality control
To ensure the smooth progress of the investigation, the research team implemented quality control in all aspects of the investigation, and the quality control measures were implemented throughout the research process. This included the quality control of survey tools, the quality control of the implementation process, and the quality control of data collation. The survey tool underwent a literature review, qualitative interviews, two rounds of Delphi expert consultation, and reliability and validity tests, to ensure that it was scientifically accurate. In the questionnaire distribution stage, the participants were selected strictly based on the inclusion and exclusion criteria, and the purpose, filling requirements, and matters needing attention of this study were explained in detail to the participants before the investigation was conducted to ensure the authenticity and effectiveness of the investigation. All collected data were reviewed and entered by two staff members, and invalid questionnaires were eliminated to ensure the reliability and accuracy of the obtained data.
Statistical analysis
The data were sorted and analyzed using SPSS 26.0, R4.2.1, and R Studio. The quantitative data conforming to a normal distribution were presented as the mean and standard deviation (X S); the qualitative data were expressed as examples and percentages (%). Univariate analysis was performed using t-tests or f-tests. Using R4.2.1 software, the random forest model was analyzed, and the variables with significant differences in single-factor analysis were included in the random forest model. Then, the importance scores of the variables were obtained and sorted, and the variables were screened by performing LASSO analysis. The selected variables were analyzed by multivariate stepwise regression. All differences were considered to be statistically significant at P < 0.05.
Results
Sample characteristics
In this survey, 1330 questionnaires were distributed, and 1053 valid questionnaires were collected after the invalid questionnaires were rejected; the effective recovery rate was 79%.A total of 500 patients underwent percutaneous ureterostomy and 553 patients underwent ileal catheter urinary diversion., both of which were performed using laparoscopic techniques. Among caregivers, spouses accounted for 38.2%, daughters accounted for 35.1%, sons accounted for 10.6%, and other relatives accounted for 16%; women accounted for 79%, men accounted for 21%, and married individuals accounted for 78.1%, with an average age of 45.2 years; 61.1% of the participants had junior high school education. Regarding working conditions, 71.9% were employed, 11.4% were unemployed, and 16.7% were retired. A total of 48.4% of the families had a per capita monthly income of less than 2,000 yuan. A total of 71.2% of the caregivers had taken care of patients for at least 8 h a day, 35.8% had taken care of them for 1–3 months, and 65.5% had taken care of them alone. A total of 30.3% of participants thought they were in good health, over 70% had poor sleep quality, over half had symptoms of depression (55.7%) and anxiety (54.7%), and 60.2% had a poor diet. Moreover, 60% of participants had good hearing ability, 41.9% had good eyesight, 82.5% had no religious belief, 58% had two children, 25% lived with patients, and 70.4% had no similar care experience before (Table 1) (Supplementary Table 1).
Table 1.
Key characteristics of family caregivers (n = 1053).
| Characteristic | Category | %/Mean ± SD |
|---|---|---|
| Relationship to patient | Spouse | 38.2% |
| Daughter | 35.1% | |
| Son | 10.6% | |
| Other | 16.0% | |
| Gender | Female | 79.0% |
| Male | 21.0% | |
| Age (years) | 45.2 ± 10.0 | |
| Residence | Urban | 77.5% |
| Rural | 22.5% | |
| Education level | Junior High School or below | 71.5% |
| High School/Vocational or above | 28.5% | |
| Presence of depression | Yes | 55.7% |
| Presence of anxiety | Yes | 54.7% |
| Caregiving alone | Yes | 65.5% |
| Relationship to patient | Spouse | 38.2% |
| Daughter | 35.1% | |
| Son | 10.6% | |
| Other | 16.0% | |
| Gender | Female | 79.0% |
| Male | 21.0% | |
| Age (years) | 45.2 ± 10.0 |
The full sociodemographic and clinical characteristics of family caregivers (n = 1053) is available in Supplementary Table 1.
Score of care needs of family caregivers of patients with urostomy.
Research shows that in each scoring dimension, the score of social support needs is the highest, whereas the score of disease care needs is the lowest. Specific dimensions and corresponding scores are presented in Table 2.
Table 2.
Score of care needs of family caregivers of ostomy patients (n = 1053).
| Number of items | Maximum value | Minimum value | Total score | Average score per item | Ranking | |
|---|---|---|---|---|---|---|
| Need for disease care | 11 | 18 | 54 | 42.07 ± 9.70 | 3.53 ± 1.22 | 3 |
| Need for physical and mental comfort | 7 | 9 | 35 | 25.69 ± 5.92 | 3.67 ± 0.85 | 2 |
| Need for social support | 3 | 3 | 15 | 10.60 ± 3.67 | 3.82 ± 0.88 | 1 |
Scores of care needs of family caregivers of patients with bladder cancer undergoing urostomy.
The data revealed that the top five needs of family caregivers of patients with urostomy were as follows: first, A1: mastering the knowledge of family care of urostomy (such as changing ostomy bags and catheters); second, A11: receiving guidance and help from medical staff on time after the patient leaves the hospital; third, A4: receiving training to evaluate the skin around the stoma (such as moisture-related dermatitis, medical adhesive-related skin injury, allergic dermatitis, atypical hyperplasia around the stoma, urate crystals, and pseudoverrucous hyperplasia); fourth, B2: receiving guidance to improve sleep quality; and fifth, B4: receiving guidance to relieve negative emotions (anxiety, tension, depression, loneliness, helplessness, helplessness, etc.). The scores of the needs of family caregivers of patients with bladder cancer undergoing urostomy are shown in Table 3. (Supplementary Table 3)
Table 3.
Top 5 and bottom 5 care needs item.
| Rank | Item code | Content (abbreviated) | Mean ± SD |
|---|---|---|---|
| 1 | A1 | Mastery of urostomy home care skills | 4.64 ± 0.79 |
| 2 | A11 | Timely post-discharge professional guidance | 4.57 ± 0.79 |
| 3 | A4 | Learning peristomal skin assessment | 4.45 ± 0.93 |
| 4 | B2 | Guidance to improve sleep quality | 4.34 ± 1.01 |
| 5 | B4 | Help to alleviate negative emotions | 4.22 ± 0.95 |
| … | … | … | … |
| 17 | B5 | Help alleviate patient’s psychological burden | 3.35 ± 1.34 |
| 18 | A7 | Creating a supportive living environment | 3.34 ± 1.43 |
| 19 | B1 | Help alleviate caregiving fatigue | 3.30 ± 1.39 |
| 20 | C1 | Gain support from relatives/friends | 3.22 ± 1.47 |
| 21 | A2 | Advice on medication at home | 3.19 ± 1.54 |
The complete list of 21 items is available in Supplementary Table 2.
The results of univariate analysis revealed statistically significant differences in the types of caregivers, gender, age, marital status, residence, education level, work status, number of people who participated in nursing together, and presence of depression and anxiety. Further details are provided in Table 4.
Table 4.
Comparison of scores of supportive care needs among urostomy patients with different characteristics (n = 1053).
| Variable | Frequency | Valid percentage | Mean ± standard deviation | t/F value | P |
|---|---|---|---|---|---|
| Type of Caregiver | 130.168 | < 0.001 | |||
| Spouse | 402 | 38.2 | 75.67 ± 18.63 | ||
| Daughter | 370 | 35.1 | 90.07 ± 11.257 | ||
| Son | 112 | 10.6 | 62.79 ± 17.456 | ||
| Other | 169 | 16 | 69.5 ± 13.989 | ||
| Gender | − 8.799 | < 0.001 | |||
| Male | 221 | 21 | 66.93 ± 23.177 | ||
| Female | 832 | 79 | 81.41 ± 15.196 | ||
| Age | r = 0.263 | < 0.001 | |||
| Marital status | 26.773 | < 0.001 | |||
| Married | 822 | 78.1 | 76.29 ± 17.829 | ||
| Unmarried | 82 | 7.8 | 77.82 ± 17.425 | ||
| Divorced | 87 | 8.3 | 88.82 ± 16.711 | ||
| Widowed | 62 | 5.9 | 92.03 ± 14.29 | ||
| Eesidence | 14.573 | < 0.001 | |||
| Rural | 237 | 22.5 | 91.24 ± 14.858 | ||
| Urban | 816 | 77.5 | 74.63 ± 17.301 | ||
| Education level | 29.618 | < 0.001 | |||
| Elementary school and lower | 109 | 10.4 | 96.94 ± 8.673 | ||
| Junior High School | 643 | 61.1 | 76.14 ± 17.377 | ||
| High school/vocational secondary school | 65 | 6.2 | 78.85 ± 19.088 | ||
| Junior college | 106 | 10.1 | 77.12 ± 17.715 | ||
| University | 63 | 6 | 75.78 ± 19.137 | ||
| Graduate | 67 | 6.4 | 73.51 ± 18.575 | ||
| Employment status | 61.388 | < 0.001 | |||
| Employed | 757 | 71.9 | 75 ± 17.887 | ||
| Unemployed | 120 | 11.4 | 92.3 ± 10.067 | ||
| Retired | 176 | 16.7 | 83.37 ± 17.964 | ||
| Family per capita monthly income, Yuan | 1.492 | 0.225 | |||
| < 2000 | 510 | 48.4 | 79.31 ± 17.667 | ||
| 2000 ~ 5000 | 302 | 28.7 | 77.89 ± 18.708 | ||
| > 5000 | 241 | 22.9 | 76.98 ± 18.426 | ||
| Daily caregiving hours | 0.22 | 0.826 | |||
| < 8 | 303 | 28.8 | 78.56 ± 17.519 | ||
| ≥ 8 | 750 | 71.2 | 78.29 ± 18.415 | ||
| Current duration of caregiving | 1.097 | 0.36 | |||
| Within 1 month | 302 | 28.7 | 77.8 ± 17.748 | ||
| 1 to 3 months | 377 | 35.8 | 78.44 ± 18.4 | ||
| 3 to 6 months | 138 | 13.1 | 79.08 ± 17.979 | ||
| 6 months to 1 year | 83 | 7.9 | 75.06 ± 18.267 | ||
| 1 to 3 years | 68 | 6.5 | 79.85 ± 19.768 | ||
| More than 3 years | 85 | 8.1 | 80.98 ± 17.233 | ||
| Number of co-caregivers | 56.036 | < 0.001 | |||
| Alone | 690 | 65.5 | 82.44 ± 16.372 | ||
| Two people | 181 | 17.2 | 71.41 ± 18.481 | ||
| More than three people | 182 | 17.3 | 69.85 ± 19.254 | ||
| Physical health status | 0.729 | 0.483 | |||
| Good | 319 | 30.3 | 79.32 ± 18.164 | ||
| Moderate | 390 | 37 | 78.23 ± 18.246 | ||
| Poor | 344 | 32.7 | 77.64 ± 18.053 | ||
| Sleep quality | 0.341 | 0.796 | |||
| Excellent | 144 | 13.7 | 78.03 ± 16.452 | ||
| Good | 169 | 16 | 79.02 ± 18.17 | ||
| Poor | 442 | 42 | 78.79 ± 18.047 | ||
| Very poor | 297 | 28.2 | 77.61 ± 19.107 | ||
| Depression | − 41.169 | < 0.001 | |||
| Absent | 466 | 44.3 | 62.23 ± 12.258 | ||
| Present | 587 | 55.7 | 91.18 ± 10.047 | ||
| Anxiety | − 43.898 | < 0.001 | |||
| Absent | 477 | 45.3 | 62.15 ± 12.447 | ||
| Present | 576 | 54.7 | 91.80 ± 8.702 | ||
| Dietary status | 2.353 | 6 | |||
| Good appetite | 250 | 23.7 | 78.75 ± 17.280 | ||
| Moderate appetite | 169 | 16 | 77.27 ± 17.093 | ||
| Poor appetite | 634 | 60.2 | 77.18 ± 18.633 | ||
| Hearing status | 2.444 | 0.087 | |||
| Good hearing | 632 | 60 | 78.95 ± 17.501 | ||
| Moderate hearing | 223 | 21.2 | 75.99 ± 19.046 | ||
| Poor hearing | 198 | 18.8 | 79.18 ± 19.023 | ||
| Vision status | 2.813 | 0.06 | |||
| Good vision | 441 | 41.9 | 78.31 ± 18.085 | ||
| Moderate vision | 358 | 34 | 79.87 ± 18.382 | ||
| Poor vision | 254 | 24.1 | 76.35 ± 17.817 | ||
| Religious belief | − 1.677 | 0.094 | |||
| Yes | 184 | 17.5 | 76.33 ± 17.856 | ||
| No | 869 | 82.5 | 78.8 ± 18.197 | ||
| Patient’s health insurance type | 0.307 | 0.736 | |||
| Self-paid | 388 | 36.8 | 77.85 ± 18.37 | ||
| Rural cooperative medical insurance | 443 | 42.1 | 78.84 ± 18.183 | ||
| Medical insurance | 222 | 21.1 | 78.35 ± 17.766 | ||
| Patient’s self-care ability | 2.445 | 0.087 | |||
| Totally dependent | 109 | 10.4 | 81.94 ± 18.251 | ||
| Partially dependent | 796 | 75.6 | 77.85 ± 18.119 | ||
| Independent | 148 | 14.1 | 78.5 ± 18.094 | ||
| Number of patient’s children | 0.751 | 0.522 | |||
| 1 | 171 | 16.2 | 79.54 ± 18.846 | ||
| 2 | 611 | 58 | 77.97 ± 18.198 | ||
| 3 | 182 | 17.3 | 79.38 ± 16.775 | ||
| > = 4 | 89 | 8.5 | 76.8 ± 19.258 | ||
| Living arrangement with patient | − 0.816 | 0.415 | |||
| Yes | 790 | 75 | 78.11 ± 18.332 | ||
| No | 263 | 25 | 79.16 ± 17.617 | ||
| Previous caregiving experience | 0.323 | 0.746 | |||
| Yes | 312 | 29.6 | 78.65 ± 17.636 | ||
| No | 741 | 70.4 | 78.25 ± 18.378 |
Screening of factors influencing the care needs of family caregivers of patients with bladder cancer undergoing surgery
Importance ranking of variables
The total score of the assessment of the care needs of family caregivers of ostomy patients was used as the dependent variable, and the variables showing statistical significance in the univariate analysis were used as the independent variables. As some variables were disorderly classification variables, marital status, and main caregiver types were transformed into dummy variables, and then multiple linear regression analysis was conducted. The assignment of independent variables is presented in Table 5.
Table 5.
Explanation table for independent variable assignment.
| Independent variable | Assignment |
|---|---|
| Type of caregiver | Taking “daughter” as the reference to set dummy variables, then “spouse” = (1, 0, 0), “son” = (0, 1, 0), and “others” = (0, 0, 1) |
| Gender | “Male” = 1, “Female” = 2 |
| Age | Original value |
| Marital status | Taking “married” as the reference to set dummy variables, then “unmarried” = (1, 0, 0), “divorced” = (0, 1, 0), and “widowed” = (0, 0, 1) |
| Residence | “Rural area” = 1, “Urban area” = 2 |
| Education level | “Primary school education or below” = 1, “Junior high school” = 2, “Senior high school/secondary vocational school” = 3, “Junior college” = 4, “Undergraduate degree” = 5, “Postgraduate degree” = 6 |
| Employment status | “Employed” = 1, “Unemployed” = 2, “Retired” = 3 |
| Number of co-caregivers | “Living alone” = 1, “Living with one other person” = 2, “Living with more than two people” = 3 |
| Depression | “No” = 1, “Yes” = 2 |
| Anxiety | “No” = 1, “Yes” = 2 |
Ranking the importance of variables, the total score of the evaluation scale of care needs of family caregivers of ostomy patients was set as the dependent variable, and the variables with significant differences in the univariate analysis were included in the random forest model. The output results were obtained using the RandomForest package in RStudio. Among them, %IncMSE (increase in the mean squared error) represents the average decrease in accuracy, and the larger the value of %IncMSE, the greater the importance of this variable among various influencing factors. The variable coding and assignment of the random forest model are shown in Table 5. The results showed that the variables in descending order of importance were gender, place of residence, degree of anxiety, number of people participating in care together, degree of depression, education level, work status, type of caregiver, age, and marital status. Further details are provided in Fig. 1.
Fig. 1.
The order of importance of factors affecting care needs.
Variable screening
According to the ranking results of variable importance, 10 variables with significant differences in univariate analysis were analyzed by LASSO using the glmnet function in RStudio. The details are provided in Fig. 2. In the figure, the left vertical dashed line represents lambda.min, and the right vertical dashed line represents lambda.1se. In the interval of [lambda.1se, lambda.min], the deviation of the model changed the least. When lambda (λ) was 4.297, the error reached the minimum, and the corresponding number of influencing factors was 10. Based on this finding, gender, place of residence, anxiety, number of people participating in nursing together, depression, education level, work status, type of caregiver, age, and marital status were included in the multiple stepwise regression analysis.
Fig. 2.
Feature variable screening based on LASSO analysis.
Multiple linear regression analysis of the factors influencing the care needs of family caregivers of patients with bladder cancer undergoing urostomy.
The multifactor analysis of the care needs of family caregivers of ostomy patients was performed as follows: the total score of the care needs assessment scale for family caregivers of ostomy patients was set as the dependent variable, the top 10 variables selected by the random forest model were set as the independent variables, and then multiple stepwise regression analysis was conducted. The results revealed that sex, place of residence, anxiety, number of people who participated in nursing together, depression, education level, work status, type of caregiver, age, and marital status were the key factors affecting the care needs of family caregivers of ostomy patients (P < 0.05). The results of multiple linear regression on the influencing factors of quality of life are shown in Table 6.
Table 6.
Results of multiple linear regression analysis on influencing factors ofcare needs (n = 1053).
| Unstandardized B | Standard error | Standardized B | t | p | VIF | |
|---|---|---|---|---|---|---|
| Constant | 40.973 | 3.086 | 13.277 | < 0.001 | ||
| Type of caregiver | ||||||
| Daughter | Ref | Ref | Ref | Ref | Ref | Ref |
| Spouse | − 2.804 | 0.722 | − 0.075 | − 3.882 | < 0.001 | 1.595 |
| Son | − 5.427 | 1.156 | − 0.092 | − 4.693 | < 0.001 | 1.646 |
| Other | − 4.563 | 0.937 | − 0.092 | − 4.869 | < 0.001 | 1.532 |
| Age | 0.112 | 0.036 | 0.062 | 3.1 | 0.002 | 1.682 |
| Gender | 6.703 | 0.759 | 0.15 | 8.834 | < 0.001 | 1.236 |
| Marital status | ||||||
| Married | Ref | Ref | Ref | Ref | Ref | Ref |
| Unmarried | 2.213 | 1.125 | 0.033 | 1.967 | 0.049 | 1.177 |
| Divorced | 2.192 | 1.073 | 0.033 | 2.043 | 0.041 | 1.13 |
| Widowed | 2.839 | 1.302 | 0.037 | 2.18 | 0.029 | 1.217 |
| Residence | − 6.751 | 0.708 | − 0.155 | − 9.534 | < 0.001 | 1.133 |
| Education level | − 0.534 | 0.22 | − 0.039 | − 2.422 | 0.016 | 1.114 |
| Employment status | 0.892 | 0.416 | 0.037 | 2.146 | 0.032 | 1.302 |
| Number of co-caregivers | − 1.777 | 0.379 | − 0.076 | − 4.688 | < 0.001 | 1.107 |
| Depression | 8.751 | 1.484 | 0.24 | 5.896 | < 0.001 | 1.039 |
| Anxiety | 15.087 | 1.507 | 0.414 | 10.013 | < 0.001 | 1.286 |
R2 = 0.757, R2 adj = 0.753.
Discussion
This study systematically assessed the current care needs and influencing factors among family caregivers of bladder cancer patients who underwent urinary ostomy surgery, providing evidence-based support for developing targeted intervention measures. Findings revealed significant needs across three dimensions: disease management, physical and psychological comfort, and social support. Social support scored highest, highlighting major gaps in emotional support, information access, and social resource linkage. The five most pressing needs were: acquiring knowledge and skills for home stoma care (e.g., changing ostomy pouches, managing urinary catheters); timely access to medical guidance and assistance after discharge; learning to assess peristomal skin condition; improving sleep quality; and alleviating negative emotions.
Family caregivers should be assisted in obtaining professional help and timely guidance after patients are discharged from the hospital to solve urgent nursing problems. Effective and timely communication among medical staff, patients, and their families is highly important for patients to return to family life smoothly14. When patients with urostomy are discharged from the hospital, family caregivers are extremely eager to receive professional guidance and assistance from medical staff, such as how to replace urostomy bags, how to assist patients in bathing, and the patient’s diet9. Medical staff can make full use of the advantages of the internet to provide support to family caregivers, for example, by establishing a WeChat group for family caregivers of urostomy patients and opening a hotline for family caregivers9 .
Peristomal skin complications (PSC) occur commonly after an ostomy. There is no uniform standard for epidemiological data, and this complication may occur at any time15, which is one of the needs of family caregivers of urostomy patients. The incidence rate of complications is high in the first five years after surgery16. The incidence of PSC is between 36.3% and 63% within 90 days after.
surgery17,18, and the prevalence rate is 45% at three and six months after discharge, 21% at 12 months and 18% at 24 months19. Patients with PSC have longer hospitalization times and a greater possibility of readmission, and their postoperative nursing expenses are significantly greater than those of patients without complications16,17. The risk factors related to PSC are diverse and include operation type, stoma site marking, stoma type, operation duration, obesity, diabetes status, sex, body mass index, age, potential complications and complications, and chemotherapy and radiotherapy20–22. The incidence of PSCs is greater in patients who undergo emergency surgery and whose preoperative stoma site is not marked, as well as in patients who are administered chemotherapy and radiotherapy23,24..
In clinical practice, the choice of surgical approach may also indirectly influence caregiver burden. Recent comparative studies examining the impact of robot-assisted radical cystectomy (RARC) versus open radical cystectomy (ORC) on patient quality of life suggest that RARC may offer advantages in certain dimensions—such as speed of postoperative recovery and pain management—thereby reducing the physical care demands on caregivers during the early postoperative period27 .Although this study did not directly compare the specific effects of different surgical techniques on caregiving demands, such research directions suggest future opportunities to explore the interplay between surgical techniques, postoperative rehabilitation pathways, and the burden of family caregiving.
Notably, caregivers who are female, reside in rural areas, experience symptoms of anxiety or depression, bear sole caregiving responsibilities, have lower educational attainment, are unemployed, or fulfill specific family roles (such as daughters or spouses) report significantly higher care demands.
Most family caregivers are female. Daughters spend more time taking care of their parents than sons and often undertake personal care, going out to work, cooking, and housework, whereas sons are less likely to help with cooking, washing clothes, and shopping. Regarding family support, when the caregivers are sons, they usually receive more emotional and material support from their wives than daughters do from their husbands. In terms of psychological effects, the negative effect of high-intensity nursing work on the physical and mental health of women is more significant, and female caregivers are more likely to suffer from anxiety and depression.
The difference in residence significantly affects the needs of family caregivers of patients with bladder cancer undergoing urostomy. Because of convenient transportation, rapid information dissemination, and rich medical resources, urban caregivers can easily obtain nursing knowledge and professional guidance and receive psychological support through community activities, but they experience greater economic pressure because of the high cost of living. In contrast, caregivers in rural and remote areas are limited by geographical location, network, and medical resources. They have few ways to obtain nursing knowledge and professional guidance and have weak community support functions. Although their cost of living is lower, their family income is limited, and the proportion of medical insurance reimbursement may not be high, which may lead to economic difficulties. Therefore, caregivers in rural and remote areas need nursing knowledge, telemedicine guidance, and community psychological support services more urgently; moreover, caregivers everywhere expect economic security measures to reduce the burden.
Advanced age, functional dependence, cognitive impairment, comorbidities including malnutrition and sarcopenia and frailty have been found to be variably associated with adverse outcomes after RC surgery.Bladder cancer patients experience varying degrees of frailty after undergoing ostomy surgery, Despite guideline recommendations, few institutions have implemented clinical pathways that incorporate frailty into routine decision-making for patients undergoing radical cystectomy (RC)25. Therefore, the postoperative frailty status of bladder cancer patients requires attention. Additionally, patient-centered treatment management is of significant importance for bladder cancer patients.As an important participant in patients’ home care, it is very important for family caregivers to meet their needs for care.
Conclusion: The care needs of family caregivers of urostomy patients with bladder cancer are extremely important. The types of family caregivers, along with gender, age, length of care, working status and income, education level, and marital status, are the key factors affecting the care needs of family caregivers of ostomy patients. Considering the above factors, it is very important to formulate personalized intervention programs for family caregivers of patients with bladder cancer undergoing urostomy.
Limitation
This study has certain limitations regarding the inclusion of variables. The omission of factors such as patients’ disease stage/severity, preoperative physical condition, comorbidities, and postoperative complications may introduce confounding bias into the results.
Supplementary Information
Below is the link to the electronic supplementary material.
Author contributions
X.H. conceived and designed the study. C.G., Y.Z., K.G. were responsible for the acquisition of data. X.L., H.X., Y.L. contributed to the interpretation of data.X.H., Y.Z., C.G. wrote the ffrst draff of the paper. All authors were involved in the subsequent revision and approved the final manuscript.
Funding
Practical Exploration and Theoretical Innovation Research on the Integration of Psychology into Party Building Work: An Interdisciplinary Integration Path Based on Positive Psychology and Social Support Theory. The scientific research project of Shanxi Provincial Health and Wellness Committee in 2025, the development and mechanism of the evaluation tool for the care burnout of informal caregivers of patients with bladder cancer undergoing urostomy(grant number:2025MQ009).
Data availability
The datasets generated and/or analysed during the current study are not publicly available due to privacy policy but are available from the corresponding author upon reasonable request.
Declarations
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.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The datasets generated and/or analysed during the current study are not publicly available due to privacy policy but are available from the corresponding author upon reasonable request.