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Abstract
Objective To understand the current level of social alienation among patients with stress urinary incontinence (SUI) and analyse the influencing factors to provide a foundation for better clinical support for patients’ reintegration into society.
Methods We conducted a comprehensive survey and analysis involving 230 patients with SUI using a general information questionnaire, a general sense of alienation scale and a social impact scale.
Results The general sense of alienation scale score of patients with SUI was 25.43±13.994, while the social impact score was 39.25±12.167. Multiple linear regression analysis revealed that marital status, primary caregiver, presence of concurrent illnesses and severity of urinary incontinence were the key influencing factors contributing to SUI-related social alienation (p<0.05).
Conclusion Patients who suffered from SUI experienced a moderate level of social alienation. Tailored interventions are recommended, especially for individuals who are divorced, rely on friends or relatives as primary caregivers, have concurrent illnesses or experience severe SUI, to enhance their social integration.
- Gynecology
- Maternal Health
Data availability statement
Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Stress urinary incontinence (SUI) is called ‘social cancer’, which brings great troubles to patients’ daily life and is attracting more and more attention, and we need to focus on the psychological state of this population.
WHAT THIS STUDY ADDS
This article investigates patients with SUI using the ‘General Alienation Scale’ to discuss and analyse their current conditions and influencing factors.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
By analysing the influencing factors of social alienation in patients with SUI, this paper provides a theoretical basis for medical workers to more accurately identify and predict patients with SUI and provide personalised health education and nursing measures.
Introduction
Stress urinary incontinence (SUI) is the most common type of urinary incontinence in women. Its primary clinical manifestation is the involuntary leakage of urine from the urethral opening when intra-abdominal pressure increases, such as during activities like sneezing, coughing, laughing or physical exertion, and can have a negative impact on the physical and psychological well-being of affected individuals.1 In China, the prevalence of SUI among adult women is as high as 18.9%,2 significantly impacting their daily lives. This condition increases their psychological burden and leads to social alienation, causing them to withdraw from social activities.3 Social alienation arises when individuals fail to engage effectively with the outside world, leading to unfulfilled social desires and subsequent negative emotions and behaviours, such as loneliness, helplessness, indifference and rejection.4 Emotional and psychological distress can impact hospital attendance and compliance of patients with urinary incontinence, thereby affecting the effectiveness of treatment and the overall prevention and control of such conditions. Additionally, a sense of social isolation can heighten psychological barriers for patients, potentially leading to unexpected risks such as suicide.5 6 Currently, research on social alienation has primarily focused on patients with cancer, and there is a lack of relevant studies concerning patients with SUI. Social alienation not only affects the physical and psychological health of the affected individual but can also result in family or societal dysfunction.7–9 With various pressures and challenges from life, work and illness, patients with SUI often exhibit avoidance behaviours in social situations. This survey aims to analyse the current status of social alienation and its influencing factors in patients with SUI, providing intervention measures to facilitate patients’ integration into society.
Methods
Research subjects
We used a convenience sampling method to select female patients with SUI who sought medical care at our hospital’s obstetrics and gynaecology department from December 2022 to February 2023 as research participants.
Inclusion criteria
Participants had to meet the diagnostic criteria for SUI1 and provide informed consent to participate in this survey voluntarily. Patients should have undergone a standard questionnaire, specialist physical examination, 1-hour pad test or urodynamic examination. Patients must not have undergone pelvic organ prolapse surgery.
Exclusion criteria
Individuals with mental disorders or those unable to accurately express their personal thoughts were excluded.
Research tools
General information questionnaire
A general information questionnaire was designed by the investigators and includes demographic information such as age, educational level, primary caregiver, economic status, place of residence, concurrent diseases and severity of SUI.
General Alienation Scale
Developed by Jessor10 and translated and revised by Wu et al,11 the General Alienation Scale (GAS) consists of 15 items across four dimensions: self-alienation (three items), other-alienation (five items), suspicion (four items) and meaninglessness (three items). Each item is rated from ‘strongly disagree’ to ‘strongly agree’, with scores ranging from 1 to 4 and with the total score ranging from 15 to 60. Higher scores indicate higher level of social alienation. The Cronbach’s α coefficient for this scale is 0.816.
Social Impact Scale
The Social Impact Scale (SIS) was developed by Fife and Wright12 in 2000 to measure the stigma experienced by patients with chronic disease and cancer. Pan et al 13 translated the SIS into a Chinese version in 2007, comprising 24 items across four dimensions: social exclusion (nine items), economic discrimination (three items), internal shame (five items) and social alienation (seven items). The scale employs a 4-point rating system: 1 for strongly disagree, 2 for disagree, 3 for agree and 4 for strongly agree, resulting in a total score ranging from 24 to 96. Higher scores indicate greater perceived social impact, which signifies a more severe stigma. The Cronbach’s α coefficient for this scale is 0.853.
Data collection method
Before the survey, the purpose and significance of the research were explained to the participants. They were informed about the specific requirements for completing the questionnaire and provided informed consent. Patients were guided using standardised instructions, and the completed questionnaires were collected on the spot, with two individuals verifying the questionnaire’s completeness.
Statistical methods
Data analysis was performed using SPSS V.26.0 software. Continuous data conforming to a normal distribution were expressed as mean±SD. Statistical tests including t-tests, analysis of variance, Pearson correlation analysis and multiple linear regression analysis were conducted at a significance level of α=0.05.
Results
A total of 235 questionnaires were distributed, and 230 valid responses were collected, resulting in a response rate of 97.8%. The ages of the participants ranged from 36 to 86 years, with an average age of 54.55±10.674 years. For the GAS and SIS scores of patients with SUI, see table 1.
GAS and SIS scores of patients with SUI (N=230)
We analysed and compared the GAS scores in patients with SUI based on various demographic factors. These factors include differences in educational level, marital status, concurrent diseases, family per capita income, primary caregivers and severity of SUI. The observed differences hold statistical significance. Detailed results can be found in table 2.
Comparative analysis of the GAS scores in patients with SUI with different demographic and disease characteristics (N=230)
Additionally, we found a positive correlation between GAS and SIS in patients with SUI (r=0.146, p<0.05).
In multiple linear regression analysis, we used GAS scores as the dependent variable, the significant variables identified in the single-factor analysis, and social impact scale score as the independent variable in a multiple linear regression analysis (αin=0.05, αout=0.10). The results indicate that concurrent disease (0 for no, 1 for yes), marital status (with unmarried as the reference for dummy variables), primary caregiver (with a spouse as the reference for dummy variables) and severity of SUI (with mild as the reference for dummy variables) were entered into the regression equation. These variables collectively explained 68.3% of the total variation in social alienation (table 3).
Multiple linear regression analysis of factors affecting GAS in patients with SUI (N=230)
Discussion
Current status of social alienation and disease stigma in patients
In this survey, the GAS score of patients with SUI is 25.43±13.994 and the average item score is 2.12±0.589, indicating that patients with SUI tend to fall into the moderate range of GAS scores. This observation might be associated with the prevalent belief among most patients that urinary incontinence is not a disease and is thus often overlooked.14 The scores in our study are lower than those reported by Hong for older women with urinary incontinence (42.94±9.57). This difference could be attributed to variations in the age of the study participants. In Hong’s15 survey, the average age of the participants was 65.25±10.21 years, which is higher than the participants in our study, who have an average age of 54.55±10.67 years. Elderly individuals, compared with middle-aged individuals, are relatively on the fringes of society, potentially experiencing more social alienation and higher levels of loneliness, contributing to elevated levels of social alienation.
In our survey, the SIS score of patients with SUI is 39.25±12.167, which is lower than the previously reported score of 55.38±8.21.16 This divergence can be attributed, in part, to the fact that our study participants, with an average age of 54.55±10.67 years, are primarily unemployed or retired. As a result, they may be less concerned about self-image and view urinary leakage as an inevitable consequence of ageing.17 In contrast, the survey by Wang and colleagues16 involved individuals with an average age of 46.23±13.68 years, a stage of life marked by more social interaction, making them more susceptible to feelings of low self-confidence and social alienation.
The shame associated with illness is a significant psychological characteristic of patients dealing with a disease and can have considerable impact during the illness. Research has shown that the higher a patient’s sense of shame, the more prominent their psychological issues and the lower their quality of life.18 Therefore, healthcare professionals should have a deep understanding of the social alienation experiences of patients with SUI experiences with SIS. Approaching it from a positive psychology perspective, comprehensive team psychological therapies,19 mindfulness-based stress reduction therapies20 and other psychological measures can be employed to stimulate positive emotions, explore patients’ inner potential, alleviate mental and physical stress, and reduce their level of social alienation.
Influencing factors of social alienation in patients with SUI
Marriage status
This survey reveals that divorced individuals exhibit the highest level of social alienation, while unmarried patients experience the lowest level. This finding is consistent with the results of a study conducted by Hao et al 21 that analysed why unmarried patients may tend to be younger and less burdened with spousal-related pressures. Consequently, their thought burdens are likely lighter, leading to lower levels of social alienation.
On the other hand, individuals who have experienced divorce often grapple with varying degrees of psychological frustration and a sense of loss due to the failure of their marriage. When they also have SUI, which involves privacy-related issues, their levels of social alienation tend to rise. Coping with illness is typically a shared responsibility in a marital context. The marital discord theory underscores the importance of a supportive and intimate relationship as a beneficial resource to help patients confront their illnesses and manage stress.22 However, divorced patients lack the encouragement and companionship of a spouse and may adopt negative social attitudes, frequently remaining distant and evasive. This contributes to their relatively high levels of social alienation.
This highlights the importance of healthcare professionals actively bolstering patients’ psychological well-being. Guidance on effective emotional regulation, deconstructing negative emotions and providing psychological counselling can all be instrumental in reducing their levels of social alienation.
Primary caregiver
In this survey, the level of social alienation is highest among patients whose primary caregivers are friends or relatives, while those whose caregivers are their parents exhibit the lowest level. This contrast may be because when primary caregivers are friends or relatives, patients, constrained by social expectations and the lack of an intimate relationship, may hesitate to express their true feelings. They may be unwilling to engage in deep conversations and display insecurity or low self-esteem when interacting with their caregivers. This internalisation of shame contributes to an increase in social alienation. In contrast, when caregivers are parents, the bond of kinship and selfless love from parents tends to mitigate patients’ worries and feelings of oppression. Parental support becomes a stabilising force, empowering patients to confront their condition with confidence, ultimately reducing their sense of social alienation. This underscores the importance of healthcare professionals thoroughly assessing patients’ social support systems in clinical practice. An integrated care approach involving hospitals, communities and families can be employed to engage caregivers and provide patients with more care and companionship.23 Encouraging patients to bravely communicate their inner feelings to their caregivers, rebuilding emotional connections and helping patients cope with the emotional distress, guilt and low self-esteem caused by urinary incontinence can gradually enhance their social adaptability.24
Other concurrent diseases
Urinary incontinence is one of the five major chronic diseases that pose a significant threat to women’s physical and mental health.25 Often colloquially referred to as ‘social cancer’, this survey indicates that patients with concurrent medical conditions tend to experience higher levels of social alienation. The combination of multiple health issues inevitably results in physical discomfort and heightened patient stress. This, in turn, leads to a severe lack of self-confidence, prompting them to withdraw from social interactions and become more introverted, ultimately elevating their levels of social alienation.
Whether it is other medical conditions or SUI, although people often shy away from discussing them to avoid embarrassment, research has shown that discussing one’s illness can be a positive experience and serve as an emotional release.26 Therefore, healthcare professionals should approach patients empathetically, actively listen and communicate effectively. Activities such as support group sessions or peer discussions can be organised to enhance patients’ self-management capabilities.
Non-surgical treatments
Research has indicated a possible association between changes in pelvic floor muscles and the onset of SUI.27 Non-surgical treatments can significantly alleviate the condition by strengthening pelvic floor muscles and enhancing urethral closure function. The 2017 version of the ‘Guidelines for Diagnosis and Treatment of Female Stress Urinary Incontinence’ by the Chinese Society of Obstetrics and Gynecology and the Subcommittee on Female Pelvic Floor Disorders strongly recommends non-surgical treatment as the primary approach for urinary incontinence patients.2 This involves lifestyle interventions, pelvic floor muscle exercises, biofeedback therapy, electromagnetic stimulation and other treatments to alleviate patients’ symptoms and reduce their levels of social alienation.
Furthermore, pregnant women are also a population that needs attention as pregnancy has been identified as a risk factor for pelvic floor dysfunction (PFD), with the incidence of SUI at 6–8 weeks post partum reported to be 25.7%.28 Chinese expert consensus on primary prevention for PFD during pregnancy has recommended that through incorporation of exercise tolerance, obstetric considerations and personalised pregnancy exercise programmes, healthcare professionals can ensure the safety and health of pregnant women and their infants.29
Conclusion
The overall level of social alienation in patients with SUI is moderate and is influenced by marital status, primary caregivers, concurrent medical conditions and the everity of SUI. Healthcare professionals should conduct thorough assessments and follow-up care, focusing on promoting better communication and interaction with the outside world to reduce social alienation.
It is important to note that this survey only included patients with SUI from one hospital, which presents certain limitations and potential selection bias. Expanding the sample size in future research can further investigate the social alienation situation of patients with SUI.
Data availability statement
Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by the Ethics Committee of Peking University People’s Hospital (ethics number: 2021PHB449-001). Informed consent was obtained from all patients. Participants gave informed consent to participate in the study before taking part.
References
Footnotes
LX, LB and SL are joint first authors.
LX, LB and SL contributed equally.
Contributors LX, LB and SL performed the formal analysis, visualisation and original draft. LX, LB and SL contributed equally to this work and share first authorship. TC and XW performed the data curation and methodology. LL performed the conceptualisation. JG performed the review and editing. XL performed the supervision, project administration and was responsible for the overall content as the guarantor.
Funding The project was supported by Peking University People's Hospital Research and Development Funds (RDGS2022-12,2021-702).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.