Impact of Urinary Incontinence on quality of Life of women in Pakistan: A Qualitative Analysis

Keywords

Urinary incontinence; Qualitative study; Pakistan

Abstract

Purpose: This study seeks to explore the lived experiences and viewpoints of individuals with Urinary Incontinence (UI) and evaluate how the condition affects their quality of life. Through comprehensive interviews, the research aims to identify the physical, emotional, and social effects of UI experienced by affected individuals. A particular emphasis is placed on gaining a deeper understanding of the cultural and contextual factors that may influence these experiences among Pakistani women. This research seeks to fill a gap in existing international questionnaires, which often overlook the religious aspects relevant to our cultural norms and spiritual context. The results will contribute to the development of a culturally sensitive and population-specific assessment tool.

Design: Qualitative study with content analysis.

Subjects and Setting: The study sample included 15 patients with a mean age of 35 years, diagnosed with urinary incontinence. All participants were recruited from the Urogynecology Clinics at Aga Khan University Hospital.

Methods: Fifteen audio recorded interviews were conducted. A qualitative content analysis using an inductive approach was conducted to organize and interpret the study’s findings.

Results: Six primary themes were identified, including (1) Impact on daily life activities (2) Impairment in religious practices (3) Influence on social and interpersonal relationships (4) Psychological impact (5) Coping mechanisms (6) Barriers to effective healthcare engagement.

Conclusions: The study results indicate that UI has a substantial impact on various aspects of women’s lives, affecting not only physical health but also emotional well-being, social engagement, daily activities, and religious practices. The study highlights that women utilize various coping strategies to manage their condition, yet encounter significant barriers in accessing effective healthcare services. These insights emphasize the importance of developing culturally appropriate assessment tools that incorporate religious aspects.

Citation

Baloch N, Kashif U, Malik A, Shah MA, Novera Chughtai N (2025) Impact of Urinary Incontinence on quality of Life of women in Pakistan: A Qualitative Analysis. J Nephrol Kidney Dis 6(2): 8.

INTRODUCTION

Urinary Incontinence (UI) is characterized by the occurrence of involuntary leakage of urine. The most common types of urinary incontinence are Stress Urinary Incontinence (SUI), Urge Urinary Incontinence (UUI) and Mixed Urinary Incontinence (MUI) [1]. UI is a condition that carries a social stigma in various populations, making it challenging to collect reliable epidemiological data. Possibly due to social stigma, this condition is linked to decreased rates of seeking healthcare services [2]. Regardless of this, research indicates that around 12.4% of young women [3], 45% of middle-aged and post-menopausal women [4], and 75% of older women report experiencing some degree of involuntary urine loss [5]. Several treatment options are available for addressing UI. They encompass behavioral interventions including fluid and dietary adjustments, bladder retraining, and exercises of pelvic floor muscle that help to reduce the severity and frequency of UI, in addition to surgical and Pharmacological options [6]. Furthermore, individuals experiencing UI utilize self-management strategies, including decreasing fluid intake, implementing frequent voiding techniques, and utilizing absorbent products to address the challenges associated with the condition. Most individuals develop behavioral changes, such as decreasing physical and social activities due to concerns and fears of urinary leaks [7]. UI has significant impact on daily life and overall well-being. Research has shown that individuals with incontinence may experience heightened feelings of loneliness, sadness, and depression compared to those without incontinence [8]. To evaluate urinary incontinence, several questionnaires have been developed. These tools are valuable not only for research purposes but also for clinical practice, as they assist in assessing the severity and impact of symptoms and monitoring patient response to therapy [9]. Although cultural and religious factors significantly impact women’s experiences with urinary incontinence, existing assessment tools primarily developed in Western contexts often do not adequately incorporate these dimensions. This represents a notable gap in accurately assessing quality of life among women from diverse cultural and religious backgrounds as discussed in different studies [10].

The concept of “quality of life” is a subjective notion influenced by personal values, cultural beliefs, individual goals, age, and life expectancy [11]. Qualitative research utilizes various methods to interpret and understand texts and narrative descriptions. This type of research can provide valuable insights into perceptions and beliefs related to health conditions [12].Women’s perceptions, management behaviors, and conformity strategies vary depending on the social, economic, and cultural contexts of their respective societies. Therefore, these issues should be examined in relation to the unique cultural, social, and religious characteristics of each society [13]. In this regard, it is important to conduct qualitative studies that consider the society’s cultural and social contexts [14]. Pakistan, a diverse developing nation with a predominantly Muslim population adhering to traditional values. This country has considerably different cultural, social, and economic environment compared with people from the Western or developed nations. In developing countries, access to health care particularly for pelvic floor conditions is limited, burden of disease is poorly understood, and women usually have to live with the consequences for the rest of their lives [15]. Cultural differences can indeed influence how people perceive and experience health condition like urinary incontinence and their impact on quality of life [16].

This study aims to address this gap by exploring the complex effects of UI on women’s lives within their cultural and religious contexts, highlighting the importance of developing culturally sensitive assessment tools that incorporate religious factors. 

METHODS

Study Design

We adopted a qualitative research approach to explore the experiences of women with UI in Pakistan. To access their personal narratives, we conducted in-depth individual interviews and analyzed the data using qualitative content analysis with an inductive framework. This method is particularly suited for exploring sensitive issues, such as the experience of UI.

Sample and study setting

Participants were enrolled from the Urogynecology Clinics at Aga Khan University Hospital. The inclusion criteria included female patients aged 18 years or older diagnosed with UI and possessing proficiency in speaking and understanding Urdu, thereby enabling effective communication of their experiences. Participants were excluded if they presented with severe neurological or psychiatric conditions or if they were terminally ill. 

Eligible patients who expressed interest were invited to participate in the study. They were then given detailed verbal information about the study’s purpose, and informed consent was obtained before conducting in-depth interviews. The study comprised fifteen participants, whose ages ranged from twenty to fifty years.

Data collection

The research team has formulated an interview guide that addresses four essential areas: daily routine activities, social interactions, psychological effects, and coping strategies associated with urinary incontinence. Each interview began with an open-ended question to encourage free expression. Interviews were conducted in the counseling rooms of the Urogynecology Clinics, with each session lasting approximately 20 minutes. All interviews were digitally recorded and transcribed verbatim. To ensure confidentiality, any identifying information, including names and locations, was anonymized.

Data Analysis

Various methods are available for conducting content analysis [17,18]. A qualitative content analysis was conducted using an inductive approach to structure and interpret the data [19]. The initial step involved repeatedly reading the interview transcripts and performing open coding. From these codes, a set of primary categories was inductively developed. In the second step, the categories were organized under broader, higher-order themes by clustering similar or related categories. This process aimed to reduce the overall number of categories through thematic consolidation.

Finally, a comprehensive description of the research topic was developed by synthesizing and interpreting the main categories derived from the analysis. The first author performed the main coding and discussed the category system with the co-authors several times during the analysis process. The software ATLAS.ti facilitated the organization of the data and the coding system.

RESULTS

Six main themes were revealed in the content analysis including: 1. Impact on Daily Life Activities 2. Impairment in Religious Activities 3. Impact On Social & Interpersonal Relationships 4. Psychological Impact 5. Coping Mechanism 6.Barriers to Effective Healthcare Engagement (Figure 1).

Figure 1: Six main themes

Impact on Daily Life Activities

The first main theme, Impact on Daily Life, captures participants’ reflections on how bladder control issues altered their everyday lives. UI significantly affected their daily routine and overall functioning. The women described disruptions in physical activities, work responsibilities, and family roles, highlighting the practical difficulties they encountered as a result of the condition.

The following three sub-themes Health-Related Limitations, Work Life Balance Challenges, and Caregiving and Family Responsibilities highlight participants’ perceptions and experiences of the various life adjustments associated with UI (Figure 2).

Figure 2: Sub themes on the Impact on daily life activities

Sub-Theme I: Health Related Limitations: The initial sub-theme, Health-Related Limitations, highlights the potential impact of UI on participants’ physical health and overall well-being. Almost all of the participants reported restricting their physical activities out of fear of urine leakage. Activities such as swimming, exercising, and engaging in paddle sports were often avoided. Several women reported experiencing increased fatigue and physical discomfort due to frequent urination, the need to change clothing because of leakage, and disrupted sleep.

Sub-Theme II: Work-Life Balance Challenges: The second subtheme explores the impact of UI on maintaining work-life balance. Most participants reported that the condition notably impacted their ability to manage everyday responsibilities.

Sub-theme III: Care giving and Family Responsibilities: The third subtheme emphasizes the changes in caregiving roles and family responsibilities associated with UI. Participants indicated that tasks they previously handled independently are now being delegated to other family members. Table 1 displays participants’ narratives from theme 1.

Table 1: Participants’ narratives from the theme: Impact on Daily Life Activities

Impairment in Religious Activities

UI has been noted to present challenges for individuals in adhering to their religious practices, thereby resulting in a range of behavioral and emotional consequences. Two sub-themes emerged with in this category including: Decline in Spiritual Engagement and Inner Religious Conflict (Figure 3).

Figure 3: Sub themes on Impairment in Religious activities

Sub-theme I: Decline in Spiritual Engagement: Several participants reported a significant decrease in their engagement with religious rituals and practices. Owing to the frequent and unpredictable occurrence of urinary leakage, individuals often experienced reluctance or inability to engage in routine spiritual activities, including prayer, participation in religious gatherings, or visitation of places of worship. The physical discomfort related to the condition, along with concerns about maintaining ritual purity, posed considerable challenges to consistent spiritual practice.

Sub-theme II: Inner Religious Conflict: In addition to behavioral adjustments, participants reported experiencing emotional distress and internal conflicts related to their decreased involvement in religious activities. The failure to fulfill religious obligations resulted in feelings of guilt, frustration, and spiritual dissatisfaction. Table 2 displays participants’ narratives from theme 2.

Table 2: Participants’ narratives from the theme: Impairment in Religious Activities

Impact on Social & Interpersonal Relationships

Urinary incontinence was reported to significantly affect participants’ social interactions and personal relationships. Three interconnected sub-themes emerged from the data, including: Social Withdrawal and Isolation, Avoidance and Protective Behavior, and Relational Strain (Figure 4).

Figure 4: Subtheme Impact on Social & Interpersonal Relationships

Sub-theme I: Social Withdrawal and Isolation: Participants frequently reported avoiding social gatherings, family events, and informal outings with friends out of fear of potential incidents occurring in public places. The concern about potential embarrassment led many individuals to reduce their social interactions. This withdrawal resulted in feelings of loneliness and emotional disconnection.

Sub-theme II: Avoidance and Protective Behavior: Many women employed specific protective strategies to manage their symptoms, such as limiting outdoor activities, wearing dark clothing, or using appropriate sanitary products. These protective strategies, although aimed at managing the condition, frequently lead to reinforced social isolation and subsequently contribute to a decrease in participation in social activities.

Sub-theme 3: Relational Strain: Several participants reported experiencing challenges in their marital relationships, including emotional distance, reduced intimacy, and a lack of communication. The condition affected not only their physical well-being but also their self-respect and confidence within the relationship. At times, hesitancy to address the issue openly contributed to increased emotional strain, resulting in greater distance and misunderstandings between partners. Table 3 presents participants’ narratives associated with Theme 3.

Table 3: Table presents participants’ narratives from theme: Impact on Social & Interpersonal Relationship

Psychological Impact

UI was identified as imposing a significant psychological burden on participants, affecting not only their emotional well-being but also their self-perception and social confidence. Three principal sub-themes developed within this category are Emotional and Psychological Distress, Internalized Stigma, and Social Anxiety. Together, these sub-themes illustrate how the condition negatively impacts mental health, personal identity, and interpersonal relationships (Figure 5). 

Figure 5: Sub themes on psychological impact

Sub-theme I: Emotional and Psychological Distress: Participants often reported experiencing strong emotional responses, such as sadness, anxiety, frustration and feelings of helplessness, due to their inability to control the symptoms. Many individuals reported experiencing emotional exhaustion from managing this condition silently for years, often due to feelings of embarrassment.

Sub-theme II: Internalized Stigma: Participants frequently experienced feelings of shame and embarrassment, perceiving themselves as different from or less capable than others due to their condition. This internalized stigma resulted in self-blame, diminished self-esteem, and hesitation to seek support or discuss the matter, even with close family members.

Sub-theme III: Social Anxiety: The concern about public embarrassment or potential exposure resulting from leakage symptoms contributed significantly to the development of social anxiety. Many Participants gradually withdrew from work interactions, social events, and public settings due to concerns about potential accidents. Table 4 displays participants’ narratives from theme 4 

Table 4: Table displays participants’ narratives from theme: Psychological Impact

Coping Mechanism

Participants reported implementing a variety of coping strategies in response to the challenges associated with urinary incontinence. Although these behaviors are intended to alleviate discomfort, they often adversely affect overall well-being and quality of life. Three main sub themes identified are: Social Disengagement, Decreased Fluid Intake, and Limited Religious Activities. Collectively, these demonstrate how participants modified their routines, sometimes in maladaptive ways, to cope with the physical and emotional consequences of their condition (Figure 6).

Figure 6: Sub themes on psychological impact

Subtheme I: Social Disengagement: Many participants opted to withdraw from social activities due to concerns about unpredictability and the potential for embarrassment related to leakage episodes. This involved refraining from attending public events, family gatherings, and casual interactions with friends and neighbors. This disengagement functioned as a self-protective measure, resulting in increased isolation and emotional distancing from the external environment.

Sub-theme II: Decreased Fluid Intake: A widely observed maladaptive coping strategy involved deliberately reducing fluid intake in an effort to decrease urinary leakage. Although participants acknowledged the potential health risks, concerns about incontinence in public or work settings frequently took precedence.

Subtheme III: Limited Religious Activities: Several participants reported modifying or discontinuing their religious practices out of concern regarding perceived impurity during worship activities. This situation created additional challenges for individuals who previously maintained regular religious practices. Another frequently reported coping strategy among participants involved the use of absorbent pads and the selection of dark-colored clothing when going out, to help conceal any signs of leakage and prevent potential discomfort. Table 5 shows participants’ narrative 

Table 5: Table displays participants’ narratives from theme: Coping Mechanism

Barriers to Effective Healthcare Engagement:

Participants identified several factors that impede their ability to access or obtain suitable medical treatment for urinary incontinence. Two key sub-themes emerged are Reluctance or Fear of Seeking Care and Underdiagnosis or Diagnostic Oversight. These findings highlight the influence of cultural, emotional and institutional factors contribute to delays in diagnosis and treatment (Figure 7).

Figure 7: Subthemes on Barriers to Effective Healthcare Engagement

Sub-theme I: Reluctance or Fear of Seeking Care: A considerable number of participants expressed reluctance to seek advice from healthcare professionals due to feelings of embarrassment, concerns about potential judgment, or the perception that UI is a normal aspect of aging or motherhood. This internalized stigma sometimes made it challenging to engage in open communication with medical providers. The hesitation was also influenced by limited awareness of available treatment options, which contributed to a cycle of silence and self management.

Sub-theme II: Under diagnosis or Diagnostic Oversight: Even among participants who sought medical assistance, several indicated that their symptoms were overlooked or not adequately addressed by healthcare professionals. This diagnostic oversight resulted in delays in appropriate treatment and contributed to heightened frustration and feelings of helplessness. This sub-theme emphasizes the importance of enhancing clinical awareness and responsiveness when patients exhibit symptoms of UI. There may have been situations where participants felt insufficiently supported or misunderstood within the healthcare system due to limited inquiry or appropriate referral processes. The participants’ narratives related to this theme are summarized in Table 6.

Table 6: Participants’ narratives related to theme: Barriers to Effective Healthcare Engagement

DISCUSSION

By using a qualitative approach, the findings of this study provide insights into the multifaceted impact of urinary incontinence (UI) on the quality of life of women in Pakistan. The study underscores the significant physical, social, psychological, and spiritual challenges experienced by affected women. Additionally, it examines their coping mechanisms and the obstacles they encounter in accessing healthcare services. UI significantly restricted women’s capacity to carry out daily activities, household responsibilities, and professional obligations [20]. Participants reported experiencing physical discomfort, sleep disturbances, and persistent concerns about leakage, which have limited their physical activities and work productivity. Similar findings have been reported across different cultural settings, suggesting that UI considerably impacts women’s daily routines, participation in sports, and various aspects of their personal and social lives [21,22]. These challenges are particularly pronounced in Pakistan, where women often assume multiple caregiving and household responsibilities, thereby amplifying the overall burden and implications of the condition. Religious restrictions emerged as a unique and culturally significant theme. Islamic practices such as daily prayers and fasting require ritual purity, which was challenging for participants to maintain. The resulting decline in spiritual engagement and inner religious conflict parallels findings from studies in other Muslim-majority countries [23,24]. The inability to fulfill religious obligations exacerbated feelings of guilt and spiritual distress, highlighting the cultural and spiritual aspects of UI that are frequently neglected in Western research. The religious dimension of UI has been insufficiently explored in previous research. Therefore, this study will be unique in addressing this gap, as it emphasizes and explores each aspect relevant to the experiences of Muslim women. UI was strongly linked to emotional distress, social anxiety, and internalized stigma, leading to low self-esteem and feelings of shame. These findings align with previous studies showing that UI negatively affects mental well-being and contributes to depression and anxiety [25-27]. The cultural stigma surrounding UI in Pakistan likely intensifies these psychological effects, as women may perceive the condition as a personal weakness or moral failing, thereby avoiding disclosure and support-seeking.

Our study findings demonstrate that Urinary Incontinence (UI) significantly disrupts women’s ability to participate in social and community activities, resulting in pronounced social withdrawal and isolation. The fear of public embarrassment due to leakage acts as a strong deterrent, prompting many women to limit or altogether avoid social interactions, family gatherings, and community events. This aligns with previous studies showing that UI is strongly associated with social avoidance behaviors, reduced participation in leisure activities, and decreased quality of life [28]. Such avoidance behaviors can gradually lead to emotional consequences, including loneliness, low self-esteem, and feelings of social exclusion. The participant’s narrative reflects a transition from active social involvement to deliberate withdrawal, emphasizing the psychological strain of continually coping with and anticipating leakage in public settings. This social withdrawal not only undermines interpersonal support networks but also amplifies feelings of shame and isolation. Providing accessible education, emotional support, and effective management strategies can facilitate women’s confidence rebuilding and enhance their engagement in social activities. Participants utilized a range of coping strategies, many of which were maladaptive, including reducing fluid intake and avoiding social and religious activities. These practices may provide short-term relief but can negatively impact health, as dehydration may increase the risk of urinary tract infections and other complications. The preference for self-management over seeking professional assistance indicates both a lack of awareness and cultural obstacles to accessing care [29].This study emphasizes the significant impact of embarrassment, cultural stigma, and limited awareness on women’s health-seeking behaviors related to UI. Many participants viewed UI as a natural aspect of aging, childbirth, or womanhood, which contributed to their hesitation to seek professional care. These beliefs are aligned with prior research suggesting that cultural norms and limited awareness of available treatment options frequently hinder women from discussing UI with healthcare providers. [30]. The participants’ narratives suggest that internalized stigma and concerns about judgment may pose important challenges to accessing care. Hesitancy in discussing sensitive symptoms with healthcare providers contributes to communication barriers and self-management, potentially leading to delays in accurate diagnosis and appropriate treatment. Even when seeking medical attention, participants reported instances where healthcare providers inadequately diagnosed symptoms, highlighting systemic gaps in the recognition and management of condition

STRENGTHS

This study specifically examined the experiences of Pakistani women, emphasizing cultural and contextual factors that may impact their quality of life, healthcare-seeking behaviors, and coping strategies. The qualitative approach facilitated a comprehensive understanding of women’s perspectives, offering in-depth insights into the impact of urinary incontinence that extend beyond the scope of quantitative research.

LIMITATIONS

The study findings are based on a limited sample of participants from an urban area in Pakistan. The qualitative responses presented may not comprehensively capture the experiences, perceptions, and behaviors of individuals residing in rural areas, where access to both formal and informal support systems may differ substantially from those in urban environments.

CONCLUSION

This study provides an in-depth analysis of the impact of urinary incontinence on the quality of life among women in Pakistan, highlighting the physical, psychological, social, and spiritual challenges associated with the condition. The findings indicate that UI substantially impacts women’s daily functioning, affecting household responsibilities, professional roles, caregiving duties, as well as their ability to engage in religious activities and social interactions. The condition can lead to emotional distress, internalized stigma, and social withdrawal, which may negatively impact self-esteem and overall well-being. The study also identified maladaptive coping strategies, such as fluid restriction and social disengagement, which may further compromise health outcomes. Barriers to seeking care, such as embarrassment, cultural stigma, limited awareness, and inadequate healthcare responses, have been found to delay diagnosis and the effective management of UI.

The religious dimension was identified as a distinct and culturally significant theme. Islamic practices, such as daily prayers and fasting, necessitate maintaining ritual purity, which participants found challenging to uphold. This difficulty contributed to decreased spiritual engagement and internal religious conflicts. By exploring these dimensions in the Pakistani cultural context, this study highlights the importance of developing a questionnaire that integrates religious considerations, particularly for application in Muslim-majority countries. Future interventions might consider integrating medical, psychological, and spiritual support, with careful attention to respecting cultural and religious values, and encouraging open dialogue and prompt treatment-seeking behaviors. This study represents an important initial step toward addressing a largely overlooked women’s health concern in Pakistan and underscores the significance of developing comprehensive, culturally appropriate strategies to enhance health outcomes for women experiencing UI.

ACKNOWLEDGEMENTS

The authors would like to express their gratitude to Miss Maheen Fazal, Miss Nazish Mustafa, Miss Zahra Ali, and Mr. Zahid Khuwaja for their valuable assistance. Additionally, we extend our sincere appreciation to Aga Khan University Hospital for their support.

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