Managing the silent burden: a grounded theory study on urinary incontinence in older women

Abstract

Introduction

Urinary incontinence (UI) is a significant and common health problem among older women. Exploring their experiences in managing their condition can be an effective way to improve the care process for these patients. Therefore, this study was conducted with the aim of explaining the process of managing urinary incontinence in older women.

Materials and methods

This qualitative study, employing a grounded theory approach, was conducted from 2019 to 2022 among older women with urinary incontinence. Purposive and theoretical sampling were used, and the participants were selected from older women who referred to comprehensive health centers in Ahvaz. Data were collected using in-depth, unstructured interviews, field notes, and memo writing. A total of 40 interviews were conducted with 37 participants, with each interview lasting approximately 20 to 70 min. The interviews continued until category saturation was reached. Data analysis was performed using the Corbin and Strauss (2008) method, and MAXQDA version 10 software was used to facilitate data management.

Findings

Through data analysis, 35 initial categories, 10 subcategories, and three main categories were extracted, including: " Inadequacy in the provision of healthcare services,” " Psycho-social burnout,” and " Adaptive Interaction with the Condition.” The main concern of the participants in this study was “A deficit in organizing life threatened by the disease.” Ultimately, the core category that emerged from the combination of the categories was " Striving for adaptation and regaining control over the condition,” which was the connecting factor for all categories and concepts derived from the research.

Conclusion

This study provided valuable findings about the process of managing UI in older women with this condition within our Iranian-Islamic culture, which is significant in the field of providing specialized care to older people in our society. The discovery of concepts that were previously hidden in the lives of these older women due to the nature of the disease seems necessary to provide them with proper and safe care, as well as to help them manage their disease more effectively before it disrupts their natural life process.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12877-026-07970-1.

Introduction

Aging raises the likelihood of developing one or more chronic diseases, such that approximately 80% of individuals over the age of 60 have at least one chronic condition [1]. Due to multiple past pregnancies and following the process of menopause and long-term estrogen deprivation, most older women experience numerous endocrine, physical, and psychological changes that lead to significant anxiety and disability [2, 3]. One of the most important systems involved in older women that leads to multiple problems is the genitourinary system, and one of the complaints of elderly women is urinary incontinence [4, 5]. Urinary incontinence is described as the involuntary leakage of urine at an inappropriate time and place and is one of the most common problems in older women. The types of urinary incontinence—stress, urgency, and a combination of both—are more prevalent in older women [6, 7].

Evaluating the true prevalence of urinary incontinence in older adults is challenging due to cultural and social factors. The prevalence of this condition reported by healthcare providers is much lower than its actual prevalence in the community. It is estimated that about 50% to 75% of those affected remain undiagnosed or unreported [8]. Urinary incontinence is an increasing risk factor in older adults, and its prevalence in older women is approximately twice as high as in older men [9]. Reports indicate that the prevalence of urinary incontinence increases with age, and it is estimated that 25% to 45% of older women worldwide are affected [10–12]. In studies conducted in various regions of Asia, the prevalence of urinary incontinence among older adults is estimated to be 13%. Another study conducted in Middle Eastern countries reported a prevalence of 52% [11, 13, 14]. A different study in Iran showed the prevalence of urinary incontinence in women over 60 to be 62.2% [15].

Despite the high prevalence of urinary incontinence in older women and its complications, older adults are hesitant to discuss their problem with nurses and doctors [16]. They seem to believe that urinary incontinence is an inevitable issue that comes with aging and must be endured, or they feel embarrassed to discuss it. The unfortunate misconception among older adults due to a lack of awareness is that the condition is untreatable. In contrast, multiple treatment methods exist to alleviate or resolve this condition, and these treatments have been successful in many affected individuals [17, 18].

Considering that urinary incontinence affects various aspects of older adults’ lives, including economic, social, health, cultural, and religious dimensions [19–21], some studies have also shown that this condition can lead to social isolation, secrecy, and feelings of shame, especially in societies where there is social or cultural incompatibility with the issue [22, 23]. Therefore, understanding the experiences of these patients and how they manage their daily lives with this condition emphasizes the need to identify illness management strategies from the perspective of those affected.

A review of studies on urinary incontinence in older adults [24–28] suggests that discussing such problems differs greatly, both qualitatively and quantitatively, depending on the society and culture in which a person lives. In each society, based on its cultural and social context, older adults may manage it differently [29]. Managing urinary incontinence, particularly in older women, is a complex and multifaceted process influenced by various factors, including individual characteristics, beliefs and attitudes, previous experiences, social and cultural support, and access to healthcare services [15]. It appears that older adults often seek self-management strategies to cope with this condition. These strategies are largely dependent on the individual’s cultural and social background [6] because people in any society are subject to their own social, cultural, and religious norms and have their own specific cultural justifications for discussing their problems and how to deal with and manage them. Therefore, given the importance of this topic among older women, it is necessary to study it within each society, taking into account its cultural, social, and religious context [29–31]. Within the cultural context of Iran, social sensitivities and cultural norms related to excretory issues can significantly influence women’s experience and response to this problem. Despite the importance of this phenomenon, most research in Iran and many other countries has focused on the quantitative and epidemiological aspects of urinary incontinence, with less attention paid to a deep examination of the mental and social processes of managing it. Therefore, a study that can explain this process within the real context of life and in interaction with cultural and social conditions is essential.

One way to gain in-depth knowledge is to employ a qualitative approach to explore patients’ experiences in managing their illness [32]. Among the qualitative research approaches, Grounded Theory is a systematic and flexible approach for discovering theory from data, which enables the researcher to identify relationships between categories, conditions, strategies, and consequences, and present them in the form of a process model [33, 34]. This approach can lead to the production of a local model that can be used in planning educational, supportive, and therapeutic interventions [35].

Given the relatively high prevalence of urinary incontinence among older women, its significant impact on quality of life, and the limited availability of process-oriented qualitative studies in Iran addressing how older women manage this condition, the present grounded theory study was conducted to explain the dynamic process of urinary incontinence management among older women within their socio-cultural context. Unlike previous descriptive qualitative studies, this study aimed to develop a process-oriented explanatory framework by identifying the relationships among contextual challenges, psycho-social responses, adaptive strategies, and efforts to regain control over the condition. Although the findings emerged from the Iranian cultural context, the conceptual processes identified in this study may also contribute to a broader understanding of chronic illness adaptation and management among older women in culturally sensitive and family-oriented societies. Therefore, this study sought to provide a conceptual framework that may inform geriatric nursing and midwifery care, as well as future qualitative research on urinary incontinence management in later life.

Materials and methods

Aim

This research aimed to explain the process of managing urinary incontinence in older women.

Study design

This research employed a qualitative approach using grounded theory with an exploratory orientation. Grounded theory was selected as it views reality as socially constructed and dynamic, and provides a framework for uncovering how participants interpret and manage their experiences. Such a design is particularly suitable in contexts where prior theoretical explanations are scarce, existing models fail to capture the complexity of the phenomenon, fully or the available evidence is limited. By applying grounded theory, the study aimed to generate new conceptual understanding and develop insights into the experiences of older women dealing with urinary incontinence [34, 36].

Research question

“What is the main concern of older women in the area of urinary incontinence management, and how do they process and resolve this concern?”

Participants

The study population consisted of Persian-speaking women aged 60 and above, with an average age of 66.76 years. who had received a clinical diagnosis of one form of urinary incontinence. Regarding educational level, the highest frequency was among illiterate women (40.0%), followed by those with a middle school education (32.0%) and high school diplomas (12.0%). Additionally, 8.0% of the participants had a primary education, and 8.0% held a bachelor’s degree. In terms of employment status, the majority of participants were housewives (80%), while 20% were retired employees. Regarding marital status, 60% of the participants were married, while 40% were widowed (Table 1).

Table 1.

Demographic characteristics of older women participants (n = 25)

Variable	Category	n (%)
Age	Mean age (years)	66.76
Educational level	Illiterate	10 (40.0)
	Primary education	2 (8.0)
	Middle school	8 (32.0)
	High school diploma	3 (12.0)
	Bachelor’s degree	2 (8.0)
Occupational status	Housewife	20 (80.0)
	Retired employee	5 (20.0)
Marital status	Married	15 (60.0)
	Widowed	10 (40.0)

Eligibility criteria required that participants had been living with the condition for at least six months, had no record of mental health disorders, were fully oriented and able to communicate, and expressed willingness to participate and share their personal management experiences. Sampling initially relied on purposive sampling among older women attending comprehensive health centers in Ahvaz. As the research progressed, theoretical sampling was applied to ensure the refinement of emerging categories until data saturation was achieved.

To achieve maximum variation among the participants, elderly women with diverse educational levels, marital statuses, and financial statuses were enrolled in the research.

A total of 40 interviews were conducted with 37 participants. The primary participants included 25 older women aged 60 years and above with a clinical diagnosis of urinary incontinence who had been living with the condition for at least six months. To enhance theoretical development and achieve deeper understanding of the process of urinary incontinence management, additional interviews were conducted with 12 secondary participants, including family members (n = 5) and healthcare professionals (n = 7), who were directly involved in the care or management of older women with urinary incontinence.

Detailed demographic characteristics of the older women participants and secondary participants are presented in Tables 1 and 2.

Table 2.

Demographic Characteristics of Family Members and Healthcare Professionals (n = 12)

Participant Role	Age (years)	Educational Level	Work Experience (years)
healthcare caregiver	46	Bachelor’s degree	24
healthcare caregiver	50	Bachelor’s degree	27
healthcare caregiver	41	Bachelor’s degree	17
healthcare caregiver	45	Bachelor’s degree	21
physicians	48	Medical degree	23
physicians	55	Medical degree	28
Specialist physician	46	Specialist degree	18
Participant’s children	30	Bachelor’s degree	—
Participant’s children	37	Master’s degree	—
Participant’s children	37	High school diploma	—
Participant’s spouse	67	High school diploma	—
Participant’s spouse	68	Primary education	—

Family members and healthcare professionals participated to provide complementary perspectives and enhance theoretical development during grounded theory analysis

Data collection procedure

Data were collected via face-to-face, unstructured, in-depth interviews conducted by the first author in a calm environment from November 2019 until May 2022. The time and place of the interviews were arranged with the participants.

During the interviews, participants were asked to explain their illness, related problems, and the actions they had taken to manage it, as well as their perceptions, thoughts, and feelings on the subject. Based on the participants’ statements and through the use of probing and clarifying questions, the interview process was guided to cover the research objectives. The participants’ answers to the researcher’s questions served as a guide for subsequent questions. For example, initial questions included: “Describe your life story with urinary incontinence,” “What problem/problems has urinary incontinence created for you?“, and “What do you do to solve/cope with these problem/problems?“. In this process, since individuals’ insights and personal experiences were being explored, they would usually focus on the most critical issue on their mind and, in their statements, refer to examples of how they managed their illness. The interviewer, using active listening, guided the interview with probing questions to clarify the topic and in line with the participants’ explanations. These questions included: “Please elaborate on this?“, “Could you give an example of this issue?“, “Could you share an experience about this?“, “How did you feel in this situation?“, “What did you do when you faced this problem?“, and so on.

The interviews lasted between 40 and 70 min, and were recorded using a digital voice recorder. The interviews continued until the new information received from participants no longer led to changes in the categories that had been formed or the characteristics and features of the existing categories.

Initial category saturation was observed after approximately 24 interviews, when no substantially new concepts or properties emerged from the data. However, theoretical sampling and additional interviews were continued to further refine the relationships between categories, validate emerging interpretations, and ensure conceptual depth and variation. Saturation was considered fully achieved when the categories were well developed in terms of their properties and dimensions, and when additional interviews no longer contributed meaningful changes to the emerging grounded theory model.

Once each category was sufficiently developed in terms of characteristics and dimensions, with maximum diversity and data saturation achieved, the interviews were concluded. Overall, 40 interviews were conducted with 37 participants (three participants were interviewed twice). After each interview, its content was transcribed verbatim in the shortest time possible.

The interviews with three of the participants were repeated because ambiguities arose in the researcher’s mind after analyzing these three interviews. Based on the participants’ statements, new questions were generated for the researcher. Therefore, to resolve these ambiguities and obtain the correct answers to these questions, it was necessary to re-interview these three participants to gather more profound and more comprehensive data.

Another method used in data collection was field notes. Field notes were made during and immediately after each interview. The researchers used this method as a supplementary and confirmatory tool for the interviews. While in the field, the researchers encountered events and scenes that had not been planned for in advance. Since they identified these events as helpful to the research process, they observed and documented them, using these notes during the analysis. According to Corbin (2008), researchers can use field notes as a supplementary method to collect data and bridge the theoretical gaps between categories [37].

Data analysis

This study was conducted using the Straussian grounded theory approach developed by Strauss and Corbin (2008). The study adopted a systematic and interpretive approach to data analysis aimed at explaining social processes through open, axial, and selective coding. Although constructivist grounded theory literature was consulted to enrich qualitative sensitivity, the methodological framework, coding procedures, and paradigm model used in this study were fully based on Strauss and Corbin’s approach.

First, the recorded interviews were transcribed verbatim. After repeatedly reading the transcripts to gain an overall understanding of the content, a word-by-word and line-by-line review and coding process was performed. Using the method of constant comparative analysis, the extracted data were examined for similarities and differences, and common concepts were categorized, which ultimately led to the creation of Initial categories, subcategories, and Main categories. During the data analysis process, memo writing was employed as a significant technique for analysis, in conjunction with continuous data comparison [38].

Given the interpretive nature of grounded theory research, reflexivity was continuously considered throughout the study process. The researchers were aware that their professional backgrounds and prior experiences in the field of older adults’ health could influence data interpretation. To minimize potential bias, the research team engaged in ongoing reflective discussions during data collection and analysis, carefully reviewed emerging categories through constant comparative analysis, and ensured that concepts were grounded in participants’ experiences rather than researchers’ assumptions. In addition, peer debriefing and regular analytic discussions among the research team contributed to enhancing reflexivity and analytic rigor throughout the study.

During axial coding, categories were linked using Strauss and Corbin’s coding paradigm, including contextual conditions, intervening conditions, action/interaction strategies, and consequences. This analytical process facilitated the integration of categories and contributed to the emergence of the core category, “Striving for adaptation and regaining control over the condition.” The relationships among categories and the resulting conceptual framework are presented in Fig. 1.

Fig. 1.

Grounded theory model illustrating the process of striving for adaptation and regaining control over urinary incontinence among older women

During selective coding, hypothetical statements were collected to comprehensively explain the process of managing urinary incontinence among older women. Finally, the researchers formulated a theory regarding this process by extracting an integrated and highly abstract core category that merged the relationships between all the extracted categories.

It is worth noting that MAXQDA version 10 was used solely as a data management and organizational tool to facilitate coding, data retrieval, and comparison during the analytic process. The conceptual analysis and theory development were conducted by the researchers in accordance with Strauss and Corbin’s grounded theory approach.

Rigor

According to Lincoln and Guba (1985), four criteria for ensuring the trustworthiness of qualitative research findings are credibility, dependability, transferability, and confirmability [39].

To enhance the trustworthiness of the findings, several strategies were applied. Credibility was supported through long-term engagement with participants over 15 months, as well as through iterative review of codes, categories, and themes by the research team. Participants were also asked to check and confirm the preliminary codes (member checking). Dependability was addressed by involving the research team throughout all stages of the study and by inviting independent reviewers to examine the analytic process. Confirmability was strengthened by documenting the entire research procedure, particularly data collection, coding, and theme development, and submitting these records for external audit. To improve transferability, participants were recruited with maximum variation in demographic and experiential characteristics.

Ethical considerations

Data collection commenced following approval from the Ethics Committee of Ahvaz Jundishapur University of Medical Sciences (Approval ID: IR.AJUMS.REC.1398.604, Proposal No. NCRCCD-9825) and the acquisition of all required permissions. Prior to participation, each woman provided both oral and written informed consent. Interviews were conducted in a manner that safeguarded participants’ comfort and privacy. To maintain anonymity and protect confidentiality, pseudonyms were used in place of real names. Participants were also informed of their right to withdraw from the study at any stage without any consequences for their healthcare. All interviews were transcribed verbatim, and coding was performed directly from participants’ own accounts to ensure fidelity to their narratives.

Results

In this study, micro-analysis yielded 3460 open codes. After merging duplicate codes, approximately 1800 codes remained. These codes were organized into 35 initial categories, 10 subcategories, and three main categories. The main categories were “Inadequacy in the provision of healthcare services,” " Psycho-social burnout,” and " Adaptive Interaction with the Condition”, which narrate the story of how older women manage urinary incontinence. The results of the data analysis are presented in Table 3. The conceptual relationships among the main concern, main categories, adaptive strategies, and the core process are illustrated in Fig. 1. (An example of the analytical process from open coding to category development is provided in Supplementary file 1.)

Table 3.

The core category, main categories, subcategories and initial categories of the study

core category	Main Categories	Subcategories	Initial Categories
Striving for adaptation and regaining control over the condition	Inadequacy in the provision of healthcare services	Ineffectiveness of Education	• Insufficient knowledge of the disease • Lack of awareness of self-care behaviors • Inadequate training provided to patients • Deficiencies in training the healthcare team
		Ineffectiveness in Providing Comprehensive Health Services	• Deficiency in screening • Inefficiency in the referral system • Ineffective therapeutic and care services • Ineffective therapeutic communication • Lack of individualized (personalized) care
	Psycho-social burnout	Deficiency in Adjusting to the Disease	• Helplessness against the disease • Hesitation in dealing with the illness • Disturbance in daily life • Dissatisfaction with life combined with the illness
		Psychological Distress	• Feeling offended • Despair and discouragement from treatment • Feeling shame and embarrassment • Constant preoccupation with the disease • Self-blame • Ever-present fear
		Social Isolation	• Facing social limitations • Social avoidance • Concealing the disease
		Lack of Support	• Financial incapacity • Need for family support
	Adaptive Interaction with the Condition	Positive motivation in the path of coping	• Submitting to God’s will and power • Hopefulness and positive thinking
		Efforts to develop awareness	• Seeking care and treatment information • Identifying the cause of the problem • Consulting with others
		Adapting Lifestyle	• Adopting strategies to control urinary incontinence • Controlling aggravating factors of the disease • Controlling intake of food, medication, and fluids • Adjusting religious practices to the condition
		Understanding and Adapting to the Situation	• Acceptance of the disease • Giving importance to the disease

Through constant comparative analysis and the use of Strauss and Corbin’s coding paradigm, the initial categories were progressively abstracted, integrated, and refined into higher-level subcategories and three main categories that explained the process of managing urinary incontinence among older women

Inadequacy in the provision of healthcare services

Older women with urinary incontinence complained about the inefficiency of comprehensive health services in various aspects, including screening, referral, receiving effective care, and a lack of respectful communication. They expressed dissatisfaction with the services provided, especially regarding the management and control of their condition. Participants’ experiences suggested that weaknesses in the healthcare system not only delayed diagnosis and treatment, but also reinforced feelings of neglect, helplessness, and loss of control over the condition. These deficiencies often contributed to delayed help-seeking, treatment discontinuation, and ineffective adaptation strategies. In this regard, participants stated:

“Since this problem is not a priority for screening, it isn’t diagnosed early, and it might turn into a more severe condition. At that point, the older person comes and raises the issue…” (p.21).

The lack of specialized service centers and professional staff for providing specialized care to older adults, as well as crowded health and medical centers and long waits for older adults when they visit, was distressing to them. Participants perceived these structural barriers as indicators that urinary incontinence in older women was not sufficiently recognized as an important health concern within the healthcare system. Such experiences reduced their motivation to seek continued care and intensified their sense of marginalization. One participant explained:

“When we go to a doctor, especially at government centers with so many visitors, they don’t give us enough time. They just want the patient to leave the room…” (P.2).

The insufficient time allocated by doctors for patient care, their greater focus on pharmacotherapy and surgery, and a lack of attention to providing supportive treatments for better management and control of the condition in older women caused the older adults to abandon treatment due to the side effects of the medications and the high cost of surgery. These findings indicate that participants were seeking holistic and supportive approaches to care rather than merely symptom-focused medical interventions. The lack of individualized and supportive management contributed to dissatisfaction with treatment and weakened participants’ trust in healthcare services. Another woman shared:

“When I tell a doctor I have this problem, they just want to prescribe a bag of medicine or say ‘go get surgery.’ That’s all they know; they don’t offer any other treatment options for this illness…” (P.4).

The unnecessary referral of older adults to higher levels of care for problems like urinary incontinence, which can be prevented and treated at the first level of care, along with the long distance to government referral centers from their homes and the tiring referral process, was burdensome for the older adults. Participants described the referral process as physically exhausting, financially burdensome, and emotionally discouraging, which frequently resulted in delayed follow-up or discontinuation of treatment. These experiences reflected gaps in continuity and accessibility of care for older women with urinary incontinence. One participant explained:

“Older adults with urinary incontinence are often unnecessarily referred to specialists instead of receiving basic care at the primary level, leading to high costs, long travel, and treatment abandonment.” (P.18).

Older adults felt that their dignity was not maintained as it should be when receiving care from healthcare providers and doctors. Some spoke of a lack of confidentiality on the part of health caregivers, while others said that caregivers and doctors were ill-tempered and disrespectful. They were very upset about being taunted, blamed, and unfairly judged after discussing their problem with the healthcare team. Participants interpreted disrespectful communication and judgmental attitudes as barriers to emotional safety and therapeutic trust. Such experiences often intensified feelings of shame and discouraged open disclosure of urinary incontinence-related concerns. As a participant described:

“It’s very difficult to communicate with some health caregivers and doctors at government centers; they don’t pay attention to you. They dismiss the issues I raise with indifference. They don’t have a friendly demeanor that would make it easy to be comfortable and share your problems with them. We need them to spend time with us, support us, pay attention to our problems, and guide us…” (P.12).

Older adults stated that a safe environment was not provided for them to easily discuss their problems, especially those accompanied by shame and embarrassment. They said their privacy was not respected in the care setting, and they were forced to talk about their problems in a crowded room with caregivers and other clients, who were sometimes their acquaintances or neighbors. In these situations, due to a lack of a sense of security, they refused to talk about many of their problems, especially urinary incontinence. The absence of privacy and psychological safety in healthcare settings contributed to concealment behaviors and reduced opportunities for early identification and effective management of urinary incontinence. In this regard, participants stated:

“ Because the health center is crowded and lacks privacy, I don’t feel comfortable talking about my urinary incontinence. Since others around me can hear, I usually deny having the problem.” (P.8).

“There are several service desks in each room, and the older person can’t comfortably talk about their issues, especially those that come with shame and embarrassment…” (P.17).

Insufficient knowledge among older adults about the disease, the treatment process, and its consequences led participants to adopt incorrect and ineffective self-care behaviors. One of the reasons for this lack of knowledge and awareness about the disease and its proper management was the inadequacy of the education provided to these patients by the healthcare team. This educational deficiency stemmed from the healthcare team’s lack of knowledge about the disease and their failure to pay attention to the educational needs of older adults in this area, and their failure to provide accurate information through proper instruction. As a result, many participants relied on incomplete information, misconceptions, or ineffective self-management strategies, which further complicated adaptation to the condition and hindered informed decision-making regarding care and treatment.

“Whenever I talked to the health caregivers about my problem, they passed it by with indifference. They just say it’s because of your old age; everyone is like this. They don’t give me any training or information to understand what I should do…” (P.7).

“I told the doctor my problem. She said it’s nothing serious, just don’t drink liquids in the evening. That’s it. She didn’t give me any medication or proper instruction…” (P.3).

Psycho-social burnout

In the present study, “psycho-social burnout” refers to a progressive state of emotional exhaustion, psychological distress, hopelessness, social withdrawal, and reduced coping capacity that emerged as older women struggled to manage the ongoing challenges and social consequences of urinary incontinence. This condition developed gradually through repeated experiences of loss of control, shame, fear of judgment, and ineffective management efforts.

Older women with urinary incontinence experienced a form of maladjustment to the disease, which caused them to be hesitant in their efforts to cope with it. This was due to facing situations where they were unable to control their urine and the disruption this disease caused in their daily lives, which led to a feeling of dissatisfaction with living with the disease. They felt a sense of helplessness against the disease because they couldn’t control their urination in sensitive situations and felt that their strategies for managing urinary incontinence were ineffective, and their efforts were fruitless. Therefore, they were hesitant to confront the disease. They felt dissatisfied with life with the disease because it had disrupted their normal life and created numerous problems for them. These experiences reflected a progressive erosion of self-efficacy and confidence in managing the condition. Repeated failures in controlling symptoms and unsuccessful treatment experiences contributed to emotional exhaustion and reduced motivation for active coping and help-seeking. As a participants described:

“I’ve given up on treatment of disease; I’ve done everything you can imagine, but I haven’t been able to manage it. I feel like there’s nothing more I can do…” (P.12).

“This disease messes up a person’s normal life; you can’t live comfortably…” (P.4).

On the other hand, due to being afflicted with the disease and facing the suffering it caused, older women experienced significant psychological pressure, and various aspects of psychological distress were evident in them. They endured a lot of suffering while living with this disease. Additionally, the ineffectiveness of their management efforts in coping with the disease led to feelings of discouragement and hopelessness about treatment. They felt ashamed of having this disease and blamed themselves for it. They were tired of constantly having to think about and control the disease. They also experienced a constant fear of being judged, rejected, etc., while living with this disease. This multifaceted pressure made them feel psychological distress. Participants’ narratives demonstrated that urinary incontinence affected not only physical functioning but also personal identity, emotional security, and social confidence. Persistent fear of humiliation, self-blame, and perceived stigma intensified psychological vulnerability and contributed to chronic emotional strain. In this regard, participants stated:

“It’s very hard to bear this problem; it’s very distressing for a person…” (P.11).

“I’ve done everything you can imagine for my treatment, but I didn’t get any results. I’ve become hopeless about the treatment.” (P.13).

“When you suddenly wet yourself in front of friends, relatives, or even your children, you feel ashamed, embarrassed…” (P.1).

“When I wet myself, I constantly blame myself for not thinking about solving this problem sooner, so it could be treated earlier…” (P.5).

“I’m afraid to go out or go to a party. I’m afraid I won’t be able to control myself and I’ll be humiliated…” (P.7).

In society, they also faced numerous limitations that led to their withdrawal and isolation. Despite the problems the disease caused, they refused to discuss it with others and preferred to conceal it, which led to feelings of isolation and social avoidance. Concealment of the condition gradually became a protective but maladaptive strategy that restricted social participation and reinforced emotional isolation. Fear of negative judgment and social stigma led many women to avoid social interactions and limit their daily activities in an attempt to prevent embarrassment and maintain personal dignity. One participant explained:

“I don’t like to talk about it with anyone or have anyone know about my problem. I hide it from everyone, even from health caregivers, doctors, and family…” (P.3).

Another woman shared:

“I hid my problem from my family and friends. I limited my recreational activities with friends or family. I only go if I have to…” (P.7).

Adaptive interaction with the condition

Older women with urinary incontinence used various strategies to manage their disease in different situations. To do this, they needed a driving force to help them persevere, and that force was hope and faith in God’s infinite power, as well as optimism and positive thinking. This gave them the motivation to take steps toward managing their condition with greater hope. They had faith that God would help them in this challenging situation and that they would succeed in managing their disease with his help. Participants’ narratives suggested that spiritual beliefs and positive thinking functioned as important psychological resources that strengthened resilience and encouraged persistence in coping with the chronic nature of urinary incontinence. Hope and faith appeared to provide emotional stability and helped participants maintain motivation for self-care and treatment follow-up despite repeated difficulties. In this regard, participants stated:

“By trusting in God, I have overcome all my problems. This is just another one. I trust in God’s support, and God will inspire me with the right way, and I will succeed…” (P.2).

“I am hopeful for my treatment, and I’m putting in all my effort and following up on my treatment, so with God’s help, this problem will also be solved…” (P.9).

Developing awareness helped older women better manage their disease. Therefore, older women with urinary incontinence sought useful information about their condition and effective methods of care and treatment from various sources. They consulted with friends, acquaintances, health caregivers, and doctors. Seeking information and consulting others represented an active attempt to regain control over the condition and reduce uncertainty surrounding disease management. Participants who developed greater awareness about urinary incontinence appeared more capable of engaging in adaptive decision-making and implementing self-management strategies. As a participants described:

“Sometimes I search on my phone to see what could be the reason for the disease and what its treatment is…” (P.3).

“I get information from my daughter-in-law and my son because they have a high level of education and knowledge in medicine, and they can give me correct information and help me…” (P.9).

“There’s a traditional medicine center near our house. I went there, and there was a female doctor. I told her about my problem, and she had good information. She helped me to some extent…” (P.13).

Given the negative impact of the disease on the quality of life of older adults, many participants came to believe that by modifying their lifestyle and adapting it to the disease, they could better control and manage it, thereby improving their quality of life. To this end, they sought to adopt strategies to curb involuntary urine leakage and tried to manage their disease by controlling and avoiding conditions that worsened it as much as possible. They were also cautious about consuming certain foods, liquids, and medications that might make it harder to control the disease. These behavioral modifications reflected a gradual process of adaptation in which participants attempted to reorganize their daily lives around the limitations imposed by urinary incontinence. Through continuous monitoring of triggers and symptom-control strategies, older women sought to preserve independence, maintain social functioning, and reduce the disruptive effects of the condition on everyday life. In this regard, participants stated:

“When I want to go out, I use a pad or a clean, multi-layered cloth so that if I leak urine, it doesn’t spill…” (P.12).

“When I lift heavy things, I leak urine. That’s why I try not to lift heavy items…” (6p.).

“ Whenever I’m away from home, I use public WC, even if I don’t feel the need to urinate. I tell myself it’s better to have an empty bladder…” (P.7).

“If I’m nervous, my problem gets worse. I try to reduce my life stresses so I can control it better…” (P.9).

“My illness is related to the amount of fluids and the type of food I eat. I generally drink less fluid and control my diet…” (P.12).

After living with the disease for several years, older women came to believe that they could better manage it by accepting it. Acceptance helped the older person understand their situation and seek an appropriate solution. They began to place more importance on themselves, their treatment, and the management of their disease, achieving the best possible adaptation to the situation caused by the illness. Acceptance emerged as a turning point in the adaptation process, enabling participants to move from emotional resistance and frustration toward more realistic and constructive management of the condition. By accepting the chronic nature of urinary incontinence, older women appeared more willing to engage in self-care behaviors and maintain efforts to preserve their quality of life and personal dignity. One participant explained:

“I told myself I have to accept it. I shouldn’t be the same as I was at 30. I have to accept it and help myself to control it…” (P.2).

Another woman shared:

“I pay a lot of attention to this problem because I don’t want it to get worse, and I hope it doesn’t get worse, God forbid, and force me to wear diapers…” (P.9).

Integration of categories and reaching the core concept

Upon reviewing the data and memos, what consistently came to the researcher’s mind, and what seemed to be the main concern of the participants, was the " Disrupted life organization due to illness.” This influenced the behaviours and strategies adopted by the older women to manage their condition.

Due to the disease, older women faced many challenges related to both their personal characteristics and their socio-cultural background. They strived to adapt to these challenges to control their lives and improve their quality of life despite the disease. Therefore, they sought to find ways to cope with these challenges.

Ultimately, what emerged from the participants’ behaviour, following the coding and categorization of themes, was the core category that connected all the extracted categories and concepts from the research: " Striving for adaptation and regaining control over the condition.”

Discussion

The present study was designed and conducted to explore the process of managing urinary incontinence in older women. The main research question was: What is the process of managing urinary incontinence in older women? To answer and explain this question, it was necessary for the researcher to choose and implement a qualitative research method, specifically Grounded Theory, from among the main qualitative research approaches.

Following the data analysis, the main categories—” Inadequacy in the provision of healthcare services,” " Psycho-social burnout,” and " Adaptive Interaction with the Condition”—were extracted from the data. These findings showed that older women faced numerous challenges due to their condition. Their primary concern was to overcome the disruption to their lives caused by the illness and to regain control of their lives and, consequently, improve their quality of life. Therefore, they sought to discover strategies to cope with these challenges and threats. Ultimately, what emerged from the integration and abstraction of the categories as the core category was " Striving for adaptation and regaining control over the condition.”

In essence, these older women, by gaining a proper understanding of the illness and using adaptive strategies to manage it, tried to control their lives despite having the disease. The findings also demonstrated that this adaptive process was strongly influenced by the socio-cultural context in which older women lived. Cultural values related to modesty, dignity, family roles, and perceptions of ageing shaped how participants interpreted urinary incontinence, disclosed their condition, and engaged in help-seeking and disease management behaviours.

In this regard, Helvik et al. also examined the strategies and actions of older adults in facing physical problems and how they manage these issues to optimize their well-being. They stated that a significant concern for older adults is the effort to maintain control and balance in life despite age-related physical problems [40, 41]. Pashaki et al. also explained the management strategies employed by older women in facing special conditions, stating that the identified strategies in their study’s older adults included preventing threats, internal self-control against threats, coping with threats, and optimizing conditions based on opportunities [42]. Similarly, the older women in our study also tried to control their lives with the disease as much as possible by adapting to the situation it created.

Based on the research findings, it was determined that various contextual factors can influence the management of urinary incontinence in older women. One of these factors is " Inadequacy in the provision of healthcare services,” which is one of the main categories of this study. This category, as an intervening factor, created obstacles for older adults with urinary incontinence in properly managing their disease and had an undesirable effect on the management process in these individuals. Comprehensive health and medical services play a crucial role in ensuring community health and in controlling and managing diseases, particularly chronic ones [43]. The inefficiency in providing services, especially at the primary level of care, can negatively impact the disease management process in older women [44].

In the present study, inadequate privacy in healthcare settings and insensitive communication by healthcare providers appeared to intensify participants’ reluctance to disclose urinary incontinence. In Iranian-Islamic culture, conditions related to bodily functions and urinary control are often associated with modesty norms and feelings of shame, particularly among older women. Consequently, many participants preferred concealment and silence rather than openly discussing their condition, which contributed to delayed diagnosis and treatment.

Numerous studies in this field have also emphasized the necessity of providing comprehensive health services, such as proper education and increasing the knowledge of older adults about their health problems by a trained and knowledgeable healthcare team. This is aimed at helping them adopt correct health behaviours and choose the right path for disease management [45, 46]. Other studies in this field have also pointed to the importance of screening for this problem in older women and its effect on better disease management and treatment [47, 48]; appropriate and needs-based referral [49, 50]; establishing respectful and appropriate communication by healthcare staff with older adults [51–53]; creating care and treatment environments where older adults feel safe and the effort of the healthcare team to create this feeling in them [54–57].

Collectively, these findings highlight the importance of person-centered and culturally sensitive healthcare services in supporting effective disease management among older women with urinary incontinence.

Given the findings of the present study regarding delayed identification and underreporting of urinary incontinence among older women, midwives and community-based nurses may play an important role in active screening and early detection within primary healthcare settings. Because many older women may hesitate to disclose urinary incontinence due to embarrassment, cultural sensitivities, or the belief that it is a normal part of aging, proactive inquiry by trained healthcare professionals may facilitate earlier recognition, timely referral, and more effective supportive interventions. Integrating urinary incontinence screening into routine geriatric and women’s health assessments may also improve continuity of care and reduce the psycho-social burden associated with delayed management of the condition.

Another main category of this study is " Psycho-social burnout.” The findings showed that older women with urinary incontinence experience significant psychological pressures and social limitations while living with the disease, which can affect their psycho-social health and, consequently, their disease management. These older adults had trouble adapting to the disease due to a lack of proper social support, both emotionally and financially. This caused them to endure a lot of psychological stress and feel trapped, which pushed them towards social isolation and withdrawal.

These findings may also reflect the influence of gendered expectations surrounding ageing women in Iranian society. Older women are often expected to maintain dignity, self-control, and caregiving responsibilities within the family, even in the presence of chronic illness. Therefore, loss of bladder control may threaten their sense of competence, independence, and social identity, leading to feelings of shame, inadequacy, and emotional exhaustion.

In this period, older adults are very emotionally vulnerable and need more attention and support. Emotional support in this period creates a sense of self-worth in them [58]. Older adults want their problems to be understood by those around them without judgment, and they need empathetic and supportive people to help them cope with their health issues and manage them more effectively through the emotional support they receive [59, 60]. The results of several other studies have also shown that individuals facing chronic illness experience high levels of negative emotions and psychological stress due to repeated setbacks in coping with the disease, which affects their adaptation to it [61–64].

Furthermore, a good social connection for patients with chronic illnesses has a very positive effect on their proper adaptation, coping, and management of the disease. This social connection requires the availability of necessary facilities for these patients in society and the ability to establish a two-way social connection between the patients and existing social networks within society [65–67].

If these conditions are not met, these patients will be unable to manage their illness as expected when in public, resort to social withdrawal and try to isolate themselves and keep their problem secret, thereby depriving themselves of society [68, 69]. Hosseini et al. also stated in their study that the lack of social support for older adults in society and the unavailability of the facilities they need lead to a decrease in their social presence and a tendency towards isolation [70].

Therefore, the emphasis by older women with urinary incontinence on social avoidance, secrecy, and depriving themselves of available social support resources—such as family, friends, and even the healthcare team—due to their illness, somehow leads to their psycho-social exhaustion, which will negatively affect proper disease management.

Although these findings emerged within the Iranian socio-cultural context, similar patterns of stigma, concealment, fear of dependency, and social withdrawal have also been reported in global gerontological literature on chronic illness and urinary incontinence among older adults. This suggests that the process of preserving dignity and maintaining social identity while managing chronic conditions may represent a broader challenge among older women in culturally sensitive and family-oriented societies.

Another emergent main category is " Adaptive Interaction with the Condition.” In fact, one of the most fundamental axes observed in the participants’ statements was concepts and meanings related to adaptive self-reflection in adjusting their actions as an older person with urinary incontinence to manage it.

Here, too, the participating older adults attempted to adaptively adjust and implement their actions for disease management by interpreting the conditions and prevailing forces in their culture and society, while utilizing available resources and navigating various issues and obstacles in the disease management process. Participants gradually developed adaptive self-management strategies through experience, awareness-seeking, lifestyle modification, and reliance on available personal and social resources.

Religious coping and spiritual beliefs also appeared to function as important cultural resources in the adaptation process. Faith in God and reliance on spiritual meaning helped many participants maintain hope, emotional endurance, and motivation for self-care despite the chronic and stigmatizing nature of urinary incontinence.

Multiple studies have also stated that hope and positive thinking are positive motivational forces that enable patients with chronic illnesses to better cope with the difficult conditions resulting from these diseases and facilitate their path to confronting and managing the disease [71–73]. Ebrahimi Bali et al. also stated that patients with chronic illness, in the light of hope and positive thinking, show resilience in living with their chronic illness, which in turn leads to adaptation to the disease and efforts to manage and treat it [74].

Furthermore, developing awareness is one of the effective strategies for disease management by older women with urinary incontinence. Increased awareness gives patients a sense of power and better control over their disease, empowering them to manage it effectively [75].

Since lifestyle is derived from beliefs, values, norms, and a combination of behavioural patterns and individual habits in life [76], patients with chronic illnesses, based on adaptive strategies and the life conditions created by the disease, choose a specific way of life to manage it better. They make changes in their way of life to better adapt to the disease and manage the problems it has created in their lives [77]. This, in turn, leads to better coping with the disease and an improved quality of life [76].

Hung et al. stated in their study that adopting a lifestyle change to manage the disease is one of the most important and initial management and treatment strategies for older adults with chronic illnesses [78]. In a study by Hayder et al., individuals with urinary incontinence also considered lifestyle changes to be effective in improving disease management and quality of life [79].

Understanding the disease and adapting to the situation is a turning point in disease management for older women with urinary incontinence. Understanding the illness is a multidimensional concept that includes understanding the cause, duration, nature, controllability, and consequences of the illness, which creates a perspective of the disease in the individual [80].

It also includes the cognitive experiences or beliefs that individuals have about their illness, such that individual, social, and environmental factors can play an effective role in shaping an individual’s understanding of their illness [81, 82], leading to outcomes such as actions for disease management by patients and an improvement in their functioning [83, 84].

Bassi et al. stated in their study that when facing chronic illnesses, individuals seek to understand their illness and health problem [85]. Obiwuru et al. state that a lack of knowledge and understanding of the disease in patients with chronic illnesses significantly affects their control and management of the disease and leads to a reduced likelihood of improved social and psychological functioning in these patients [86].

Therefore, developing an understanding of the illness may facilitate more adaptive health-related behaviours and improve patients’ ability to actively participate in disease management.

Limitations

This study has several limitations that should be acknowledged. First, as a qualitative study grounded in Strauss and Corbin’s (2008) approach, the findings are not intended to be statistically generalizable. Instead, they aim to provide a theoretical understanding of how older women experience and manage urinary incontinence. Second, the study was conducted in Ahvaz, Khuzestan Province, Iran, and thus reflects the cultural, social, and healthcare context of this region. Therefore, transferability of the findings to other settings or cultural backgrounds, particularly non-Iranian or non-Muslim populations, should be considered with caution. Third, as the data were collected through self-reported interviews about a sensitive topic, participants may have experienced some discomfort or reluctance to share certain aspects of their experience. In addition, because participants were asked to describe past experiences related to living with urinary incontinence, the findings may have been affected by recall bias. Furthermore, part of the data collection period overlapped with the COVID-19 pandemic, which may have influenced older women’s access to healthcare services, social interactions, and experiences related to disease management. The pandemic conditions may also have affected participants’ willingness and comfort in discussing sensitive health-related experiences. In addition, the present study focused on the overall process of managing urinary incontinence rather than comparing experiences across specific clinical types of urinary incontinence (e.g., stress, urge, or mixed urinary incontinence). Therefore, potential differences in management strategies according to urinary incontinence subtype were not specifically explored. Additionally, obstetric history variables such as parity and mode of delivery were not collected during the demographic assessment. Inclusion of these variables could have provided additional clinical context for understanding urinary incontinence among older women. Despite these limitations, efforts were made to enhance the study’s trustworthiness through prolonged engagement, member checking, peer debriefing, and maintaining a detailed audit trail throughout the analytical process.

Conclusion

In response to the main research question, “What is the fundamental concern and issue for older women with urinary incontinence in the process of disease management, and how do they process and resolve this concern?“, the findings showed that their basic concern was the " Disrupted life organization due to illness.”

In their journey to manage the disease, they encountered obstacles and challenges rooted in their cultural, social, and individual context. The deficiency in providing comprehensive health services was one of the obstacles for the older women in this study, acting as an intervening factor that disrupted the disease management process. Furthermore, facing numerous challenges and the ups and downs that these older adults experienced in managing the disease led to psycho-social exhaustion. The findings also indicated that cultural values related to modesty, dignity, ageing, and social expectations shaped participants’ experiences of disclosure, help-seeking, and adaptation to urinary incontinence.

However, in these challenging conditions, the older adults did not give up. With an adaptive interaction with the situation created by the illness, and despite the obstacles and pressures they faced, they tried to discover solutions with positive thinking and faith in God that would help them manage the disease. Ultimately, these older women achieved an understanding of and adaptation to the situation resulting from the illness and were able to overcome the challenges and control the condition as much as possible through effort and perseverance. This adaptive process reflected an ongoing effort to preserve personal dignity, maintain social functioning, and regain a sense of control over everyday life despite the chronic nature of the condition.

The concepts discovered in this study can, to some extent, help fill a small part of the existing knowledge gap in providing specialized care to these older adults. What is clear is that the phenomenon of caring for older adults is a highly abstract, complex, and multidimensional phenomenon that deserves more attention and deeper contemplation of its various aspects. In this study, we focused on a single aspect of the health issues faced by these older adults and examined it in depth. The conceptual framework developed in this study should be interpreted within the Iranian-Islamic cultural and social context in which it emerged. Therefore, rather than being generalized to all older women, the findings may serve as a context-sensitive framework for enhancing geriatric nursing and midwifery care for older women with urinary incontinence in similar cultural settings. At the same time, several dimensions of the adaptation process identified in this study—including stigma management, concealment, fear of dependency, and efforts to preserve dignity—may also contribute to a broader understanding of chronic illness adaptation among older women in other culturally sensitive and family-oriented societies. It is hoped that research will be conducted on other aspects as well to generate deep knowledge.

Authors’ contributions

SJ, MG, FS, KZ, and FG were involved in the study conception/design, contributed to the data collection/analysis, provided critical revisions for the important intellectual content, administrative/technical support, and supervised the work. SJ, MG, FS, and KZ drafted the manuscript. All authors contributed to the article and approved the submitted version.

Funding

This study was funded by the Nursing Care Research Center in Chronic Diseases of Ahvaz Jundishapur University of Medical Sciences (Grant No. NCRCCD-9825).

Data availability

The datasets used and analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The studies involving human participants were conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. This study was reviewed and approved by the Ethics Committee of Ahvaz Jundishapur University of Medical Sciences (IR.AJUMS.REC.1398.604, Proposal No. NCRCCD-9825), and written informed consent was obtained from all participants before data collection.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.