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. 2026 Apr 2;13(4):e70517. doi: 10.1002/nop2.70517

Experiential Aspects in Patients With Permanent Urostomy Following Bladder Cancer Surgery: Meta‐Synthesis of Qualitative Studies

Luqiang Zhou 1, Yu Chen 2, Xiaojuan Yuan 2, Fang Guo 2, Huan Feng 3, Yan Li 2, Siyue Li 2, Zhenqiang Fang 2,✉, Jiang Zhao 2,✉
PMCID: PMC13051939  PMID: 41928070

ABSTRACT

Aim

This systematic review and synthesis qualitatively explores the home life experiences of patients with a permanent urostomy following radical cystectomy. It aims to inform the development of tailored health management plans and facilitate effective intervention strategies based on patient needs.

Design

The quality of the included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research, and the findings were synthesised using the meta‐synthesis method.

Methods

We conducted a systematic literature review of qualitative studies published in both Chinese and English from the database's inception to July 2023. The databases searched for qualitative research on the home care experiences of patients with permanent urostomies after bladder cancer surgery included Web of Science, EMBASE, PubMed, PsycINFO, CINAHL, CNKI, Wanfang Database and VIP Database. Two trained researchers independently used qualitative assessment and review tools for quality assessment and thematic synthesis tools for data analysis and integration.

Results

Seven studies were included, and four themes were summarised: physiological change; love and belonging; lack of knowledge and reinventing a new life.

Patient or Public Contribution

This systematic review and meta‐synthesis enables us to better understand and give necessary help and guidance to patients according to their actual situation, to solve the problems they face in daily life, to provide emotional, social and other support, to promote their self‐adaptation, to enhance their self‐management ability and ultimately to improve their quality of life.

Keywords: meta‐synthesis, nursing, permanent urostomy, qualitative research, systematic review

1. Introduction

Bladder cancer is the most common malignant tumour of the urinary tract and one of the most common cancers in the world (Dobruch and Oszczudłowski 2021). It is more prevalent in Europe and the United States than in Asia (He et al. 2024; Richters et al. 2020). In 2023, the American Cancer Society published the most recent statistics on cancer in the U.S. Bladder cancer has the fourth highest incidence rate of 6% of systemic tumours and the eighth highest mortality rate of 4% of systemic tumours (Siegel et al. 2023). According to the National Cancer Centre of China, the incidence of bladder cancer among Chinese male patients is 3.48 per 100,000 people (Zheng et al. 2024).

2. Background

Radical cystectomy is currently the primary surgical treatment for muscle‐invasive bladder cancer, which can effectively improve the survival rate of patients and reduce the risks of local recurrence and distant metastasis (Joensen et al. 2021; Parekh et al. 2018). This procedure greatly improves patient survival, but it changes the normal way of urinating, requiring a urostomy in the patient's abdominal wall and the patient will need to wear a stoma bag for the rest of his or her life, which inevitably leads to a dramatic change in the patient's lifestyle and long‐term reliance on self‐care at home. Inadequate self‐care ability within the family and inappropriate management can increase the incidence of stoma‐related complications and seriously affect patients' quality of life (Ugur et al. 2014; van Loon et al. 2020; Bizzarri et al. 2025). This study summarises qualitative research on the self‐management experience of urostomy patients in both domestic and international settings, interprets and elaborates the inner needs of the patients in a detailed, comprehensive and systematic way, and provides the basis for the development of corresponding intervention strategies in the future, to achieve the purpose of effective management of urostomy and improvement of the quality of life.

3. Methods

3.1. Design

A pooling and integration approach recommended by the Joanna Briggs Institute (JBI) Centre for Evidence‐Based Medicine, Australia, was used to integrate the results of the literature and summarise the themes and implications of each qualitative study to make the results more compelling, relevant and generalisable (Hu 2020; Munn et al. 2014). Under the premise of understanding the philosophical ideas and methodology of each qualitative study, the researcher reads and understands, analyses and interprets the meanings of the results of each of his/her studies repeatedly, integrates the similar results together to form new categories and then summarises the categories into the integrated results, which in turn leads to the formation of new concepts or interpretations (Niu et al. 2021).

This study provides greater insight into the subjective experience of patients with a permanent urostomy by summarising the qualitative literature on the daily life experiences and needs of patients with a permanent urostomy. This review can be used to support the development and implementation of patient‐oriented stoma self‐management and provide some direction for future research.

3.2. Search Strategy

Using an automated search strategy that combined subject terms and free words with Boolean logic operations, the databases Web of Science, EMBASE, PubMed, PsycINFO, CINAHL, CNKI, Wanfang and VIP were searched for real‐world experiences of home care for patients with permanent urostomies from the database's inception to July 2023 qualitative research. The search terms are ‘bladder cancer/ileal conduit/radical cystectomy/urostomy’, ‘need/demand/difficulty/adjustment/experience/feeling’, ‘home care/self‐care/discharge/transition/transitional care’, ‘qualitative research/grounded theory/focus group method/phenomenological research/ethnography/case studies’. Positive citation tracking was performed by checking the reference lists of relevant systematic reviews and including the studies we identified and manually searching for other relevant studies to prevent omissions. The search strategy takes PubMed as an example, as detailed in Table 1. Search strategies for other databases are provided in the Appendix S1.

TABLE 1.

In the case of PubMed, for example.

#1 bladder cancer OR ileal conduit OR radical cystectomy OR urostomy
#2 need OR demand OR difficulty OR adjustment OR experience OR feeling
#3 home care OR self‐care OR discharge OR transition OR transitional care
#4 qualitative research OR grounded theory OR focus group method OR phenomenological research OR ethnography OR case studies
#5 #1 AND #2 AND #3 AND #4
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3.3. Inclusion and Exclusion Criteria

The literature was developed using the PICo model proposed by the JBI Center for Evidence‐Based Health Care (Lockwood et al. 2015). Table 2 lists our inclusion and exclusion criteria.

TABLE 2.

Inclusion and exclusion criteria.

Inclusion criteria Exclusion criteria
Study subjects (population, P) Patients with permanent urostomy after bladder cancer surgery, ≥ 18 years old, regardless of gender, without cognitive or mental disorders Study subjects (population, P) Experience of healthcare workers or caregivers
The phenomena of interest (I) The difficulties encountered by urostomy patients in the process of self‐management, their own feelings, needs, experiences and other real experiences were collected from the self‐reports of the study subjects The phenomena of interest (I) literature inconsistent with the subject of this study
Context (Co) The patient's home self‐management of the ostomy after urostomy surgery Context (Co) Studies with other stomas not separated by type
Study design (S) Grounded theoretical research, phenomenological research, ethnographic research, ethnographic research, action research, case study, etc. Study design (S)
Research type (T) Qualitative research, or the qualitative component of a mixed‐methods study where qualitative data could be extracted and analysed separately Research type (T)

Quantitative study

Studies in mixed‐method research where qualitative data constitutes < 50% of the data or where qualitative results are not reported independently
Non‐Chinese and English literature; repeated publication; reviews, conference papers or literatures whose full text is not available; the quality of literature evaluation is low; translate or interpret translations of foreign documents
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3.4. Search Outcomes

A total of 985 studies were retrieved from the database using search terms, and the literature was independently screened by two systematically trained researchers (X.Y. and F.G.), with double cross‐checking after screening was completed, and a third researcher (H.F.) made a judgement call in the event of disagreement. Chinese and English studies were imported into NoteExpress software and EndNote software for deduplication and management, respectively. After excluding 424 duplicate publications, 576 studies were further excluded following title and abstract screening. During full‐text review, 21 studies were excluded for failing to meet inclusion criteria, resulting in the final inclusion of seven studies, as detailed in the PRISMA flow diagram in Figure 1 (Hutton et al. 2015).

FIGURE 1.

FIGURE 1

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Inclusion and exclusion diagrams for each stage.

3.5. Quality Appraisal

The methodology of the included studies was evaluated using the ‘Australian JBI Centre for Evidence‐Based Health Care Quality Assessment Criteria for Qualitative Research’ (Lockwood et al. 2015). The evaluation was conducted by two researchers (X.Y. and F.G.) who had been trained in evidence‐based related courses and included 10 aspects, each of which was evaluated by ‘yes’, ‘no’, ‘unclear’ and ‘not applicable’. The assessments from the two reviewers were compared, and any disagreements were resolved through discussion or by consultation with a third researcher (HF). Studies rated as quality grade A or B were included, while those rated grade C were excluded. The specific research quality results are shown in Table 3. All studies included in the research quality rating received a grade of B (moderate quality), primarily because some studies did not adequately describe the impact of researchers' cultural backgrounds on outcomes or the influence of researcher‐study interactions. Future research should enhance methodological transparency and provide clearer explanations of cultural contexts.

TABLE 3.

Methodological quality evaluation of collected (n = 7).

Incorporation into literature 1 2 3 4 5 6 7 8 9 10 Quality grade
Jin Changde √ √ √ √ √ X X √ √ √ B
Zhao Yanli √ √ √ √ √ X X √ √ √ B
Lu Xiaofan √ √ √ √ √ X U √ √ √ B
Didem Kandemir √ √ √ √ √ √ X √ √ √ B
Giulia Villaa √ √ √ √ √ X U √ √ √ B
Claire Taylor √ √ X √ √ X U √ √ √ B
Meenal Sharma √ √ √ √ √ X X √ √ √ B
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Note: 1. Whether the basis of philosophy is the same as the theory of formula and law; 2. Whether the methodology is consistent with the research question or research objective; 3. Whether the methodology is consistent with the data collection method; 4. Whether the methodology is consistent with the representativeness of the data and the methods of data analysis; 5. Whether the methodology is consistent with the interpretation of the results; 6. Whether to explain the researcher's own situation from the perspective of cultural background and values; 7. Whether the impact of the researcher on the research is described, or the impact of the research on the researcher; 8. Whether the research object is typical, whether it adequately represents the research object and its views; 9. Research on compliance with current ethical norms; 10. Whether the conclusion is derived from the analysis and interpretation of the data.

Abbreviations: √, yes; U, unclear; X, no.

3.6. Data Extraction and Synthesis

The included literature was subjected to data extraction, which mainly included authors, country or region, year of publication, qualitative research methodology, study population, sample size, the phenomenon of interest and findings.

The results were integrated using the JBI recommended qualitative research systematic evaluation method Meta‐synthesis pooled integration. Through repeated readings to understand, analyse and interpret the connections and meanings of individual findings, similar results are summarised for combination to form new categories and then the categories are summarised integrated to form new interpretations.

3.7. Heterogeneity Processing

The included study employed various qualitative research methods, mainly including phenomenology and thematic analysis. We have noticed that different methodologies have unique philosophical foundations and analytical focuses. To ensure that the comprehensive analysis is rooted in the original data and reduce the potential impact of methodological differences on the interpretation of results, we have adopted the following strategies in the meta‐synthesis process:

  1. Focusing on the original data: Our extraction and synthesis are mainly based on the first‐order construction (direct participant citation) and second‐order construction (author interpretation) in the original research, rather than simply relying on methodological labels.

  2. Continuous comparison: We continuously cross‐validate the research results of different methods. If a topic exhibits significant characteristics in both phenomenology and topic analysis, it is considered more robust and universal.

  3. Sensitivity analysis: We reflect on whether the constructed topic is primarily influenced by specific research methods

4. Results

4.1. Characteristics Included in the Study

All studies were published by July 2023. Of the seven included studies, the sample sizes ranged from 10 to 58. Three of them were conducted in China, and the remaining four were conducted in Turkey, the UK, Italy and India. Participants in the included studies ranged in age from 26 to 83 years, and the majority were male. All studies used qualitative research methods, with six using purposive sampling and semi‐structured interviews and the other using thematic analysis. Table 4 for details.

TABLE 4.

Basic characteristics of the included studies.

Inclusion of literature Country Methodology Sample size (m/f) Age Mean age Phenomenon of interest Main themes and subthemes
Jin Changde 2013 China Phenomenological research; purposive sampling method; semi‐structured interviews 10 (7/3) 39–72 — Real‐life experiences of patients after radical cystectomy Refinement of 3 themes:

  1. Individual level: physiological function; self‐concept; Insufficient self‐care; the transformation of ideas;

  2. family level: separation anxiety; gratitude; guilt;

  3. social level: Social isolation; sociopsychological issues
Zhao Yanli 2014 China Interpretive phenomenological approach; purposive sampling method; semi‐structured interviews 15 (12/3) 48–73 58.8 ± 3.14 Real life experience after urostomy Refinement of 5 themes:

  1. emotional reactions of the patient after surgery: helplessness and pain of stoma; acceptance and adaptation of stoma; reflection and self‐blame on diseases;

  2. life‐changing effects of the stoma: changes in self‐concept; changes in self‐care ability; changes in urination and sleep; changes in diet, exercise and lifestyle habits; the impact on family support and social activities;

  3. stresses from the disease itself: pressure from the disease itself, worrying about the prognosis of the disease;

  4. needs for medical care;

  5. stresses from finances
Lu Xiaofan 2015 China Phenomenological research; convenient sampling method; semi‐structured interviews 12 (9/3) 26–72 59.25 Psychological experience of self‐perceived burden in patients after urostomy surgery Refinement of 5 themes:

  1. worried about the caregiver's physical overdraft;

  2. worried about the heavy financial burden on the family;

  3. orried about insufficient self‐care ability leading to stoma complications;

  4. overburdens of guilt;

  5. inferiority complex fills the heart
Didem Kandemir 2017 Turkey Phenomenological research; criterion sampling method 20 (10/10) — 59.90 ± 10.47 Impact of ostomy on their sexual life and that of their spouse/partner Refinement of 4 themes:

  1. change in body image;

  2. problems experienced during sexual activity;

  3. spouses' response to the problems experienced;

  4. receiving help and support in relation to the problems experienced
Giulia Villaa 2018 Italy Interpretative phenomenological analysis; purposive sampling method; semi‐structured interviews 11 (9/2) 59–83 69 Self‐care experiences of patients with urostomies Refinement of 6 themes:

  1. surgery impact: life expectancy and fear of relapse; physical repercussions of surgery; quality of life impact;

  2. body images;

  3. daily and social life activities: daily activities and hobbies; away from home management; job and stoma management job and stoma management;

  4. stoma and sexuality;

  5. managing stoma education: home stoma management and reference people; nurse's support; problem management strategies; lack of information;

  6. family and friends' support: emotional involvement and encouragement; feeling of pity
Claire Taylor 2019 UK Thematic analysis 58 (n. a.) — — Experiences of wearing support garments Refinement of 4 themes:

  1. physical self‐management;

  2. psychosocial self‐management;

  3. lifestyles;

  4. healthcare advice and support
Meenal Sharma 2020 India A phenomenological qualitative research design; purposive sampling method; semi‐structured interviews 30 (27/3) — 57 ± 11.61 The real view of the urostomy patient Refinement of 10 themes:

  1. knowledge regarding urostomy

  2. physical problems

  3. psychological problems

  4. impact on daily activities

  5. social problems

  6. family problems

  7. occupational problems

  8. financial problems

  9. religious and spiritual problems

  10. health care issues
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4.2. Meta‐Synthesis of Qualitative Date

This study employed thematic analysis for data interpretation, summarising findings through text extraction, classification, categorisation and summarisation to generate multiple statement clusters. Two researchers (Y.L. and S.L.) independently conducted comprehensive analysis through repeated reading, comparison and analysis, categorising and thematising patients' attitudes, experiences, perceptions, suggestions and needs regarding permanent urinary ostomies. The specific process comprised two stages: First, all qualitative data were extracted from the papers and grouped by similar concepts. Second, similar concepts were assigned to preliminary descriptive themes. Disagreements were resolved through discussion to reach consensus. Ultimately, 37 distinct research findings were identified, with similar results further categorised into 11 categories and consolidated into 4 core research conclusions. The lived experiences of patients with postoperative urostomy for bladder cancer were categorised according to the following four themes: (1) Physiological change; (2) Love and belonging; (3) Lack of knowledge; (4) Reinventing a new life. The final outcomes of the synthesis are depicted in Figure 2.

FIGURE 2.

FIGURE 2

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The final synthesised results.

4.2.1. Theme 1: Physiological Change

Urostomy patients are inconvenienced by wearing stoma bags for a long period of time after surgery, which brings changes to their personal image and daily life and restricts their socialisation, activities and dress code. Some patients even doubt their social value.

4.2.1.1. Sub‐Theme 1: Changes in Image

This sub‐theme mainly depicts the image change, self‐identity and self‐esteem aspects of urostomy patients who are affected after surgery due to wearing an ostomy bag for a long period of time. Six studies have contributed to this sub‐theme (Jin 2013; Kandemir and Oskay 2017; Sharma et al. 2020; Taylor et al. 2019; Villa et al. 2018; Zhao 2014).

Without my [support garment] I would not havegone out. (Taylor et al. 2019)

I wear clothes that are covered as much as possible, and I avoid people in public toilets for fear that they will see me. I don't want people to see me. (Jin 2013)

In addition to the changes brought about by personal image and daily life, some patients even begin to doubt their social value.

I know that after I was hospitalized, my colleagues, relatives and friends in the unit wanted to see me, but I didn't let them come. I don't want them to see me like this now. I am also a leading cadre in the unit, and I don't know if I can continue to work in my original position in the future. (Zhao 2014)

4.2.1.2. Sub‐Theme 2: Changes in Living Habits

This sub‐theme focuses on the impact of wearing a fistula bag after surgery on lifestyle and daily activities. Five studies contributed to this sub‐theme (Jin 2013; Sharma et al. 2020; Taylor et al. 2019; Villa et al. 2018; Zhao 2014).

When patients and their families experience the enormous trauma of illness, they cherish life especially. They reflect on their past diet and lifestyle habits while cautiously seeking dietary rationality

I used to work and often stayed up late, drinking tea every day to refresh my mind. The tea water became stronger and stronger, and if it didn't work out, I would drink coffee to refresh myself. After I fell ill, I kept recalling how I got this disease. Is it related to this? I won't dare to drink tea and stay up late anymore. Now my wife studies nutrition every day. (Zhao 2014)

Whether it is daily outdoor activities or travelling, patients are seriously affected and they are concerned about whether the flange is firm and whether the pockets are leaking.

I cannot engage in strenuous exercise. If I do, it will affect the usage time of the flange. I believe that after taking a shower, the flange will become weak and I will never dare to take a shower. (Jin 2013)

I want to stay at home because I have all my comforts. Going to my daughter's, bringing the additional night bags to change, I'm afraid of wetting the bed… of disturbing. (Villa et al. 2018)

Some patients maintain an uncomfortable sleep state due to excessive attention to urine output, intestinal mucus and whether the ostomy bag is broken or leaking, or concerns about changes in sleeping posture that may cause leakage or the ostomy bag falling off and contaminating the bed sheets. Over time, this can easily increase the mental burden and psychological pressure on patients, further exacerbating sleep disorders (Lim et al. 2015).

I always look to see how much pee is in the bag, to see how much mucus is in the bowel, to see if it's clear, to check if the bag is leaking so I don't embarrass myself by getting it on my clothes, and I'm always looking at it all day long, worrying that my clothes and sheets are wet, and once in a while, when I go to bed, the bag leaks…. (Zhao 2014)

Yes, the sleep is stressful, I worry that it may leak and spoil the bed. (Sharma et al. 2020)

4.2.1.3. Sub‐Theme 3: Sexual Disharmony

The harmonious sexual relationship between husband and wife is an important factor for family stability. Patients with stoma may have sexual problems due to their spouse/partner's reaction to the stoma. Many spouses/partners avoid sexual intercourse for fear of damaging the stoma (Petersén and Carlsson 2021; Ross et al. 2007). Three studies have contributed to this sub‐theme (Jin 2013; Kandemir and Oskay 2017; Villa et al. 2018).

I had my prostate removed, and now my sexual energy is gone…. (Jin 2013)

We have been sleeping in separate beds for three years. I have sexual desire, but I cannot have an erection. My wife had already been reluctant about it, so I also began not to care. But at nights I still have nightmares. (Kandemir and Oskay 2017)

4.2.2. Theme 2: Love and Belonging

Patients must bear a series of psychological pressures, and they often feel helpless and at a loss as to what to do in the face of a sudden stoma.

4.2.2.1. Sub‐Theme 1: Negative Emotional Response

Urostomy has changed the patient's original way of urination; patients have more doubts about their self‐image and social function, resulting in a strong sense of inferiority. Some patients are not only worried about the physical exhaustion of their caregivers but also about the huge treatment costs borne by the whole family due to the lifelong use of stoma products at a later stage. Eventually, they may develop guilt and depression. Four studies have contributed to this sub‐theme (Jin 2013; Lu et al. 2015; Sharma et al. 2020; Zhao 2014).

Now I have a bag on my belly, and I don't go out except for work because I don't know when my urine will be full. Even though I am using an ostomy bag, I still have a bad odour. I'm afraid that my wife will smell the odour around my stoma and think I'm a bad person. (Lu et al. 2015)

The main problem is monetary expenses. The supplies are very costly. (Sharma et al. 2020)

4.2.2.2. Sub‐Theme 2: Desire for Support From Family and Society

With the double blow of external image and negative emotions, patients prefer to have the encouragement and support of their family members, as well as society's ability to face up to their image. Five studies have contributed to this sub‐theme (Sharma et al. 2020; Taylor et al. 2019; Villa et al. 2018; Zhao 2014; Jin 2013).

I wanted to act like a heroine, I wanted to pretend it was nothing, I wanted to pretend to be a woman who wasn't afraid of anything, to encourage myself. But I was terribly scared. But, since I knew that up‐stairs there were my children waiting for me, this encouraged me. (Villa et al. 2018)

My sisters came to see me, their eyes were red from crying, and I didn't want to see them like that, I wanted to talk to them, I wanted their support. (Zhao 2014)

My wife has become my personal bodyguard. She can't leave my side‐she has to follow me wherever I go. I can't rest easy when she's gone, always worrying about her coming back. (Jin 2013)

4.2.2.3. Sub‐Theme 3: Religious Beliefs

Some of the patients had problems with their religious beliefs and they could not pray due to the contamination of their bodies with urine. Two studies have contributed to this sub‐theme (Kandemir and Oskay 2017; Sharma et al. 2020). This finding can only be found in Indian and Türkiye studies and may reflect the needs of specific cultural backgrounds.

In our religion, even if a drop of urine touches the body then prayers are not offered. We have to be totally pure to pray. (Eyes well up with tears). (Sharma et al. 2020)

I have become down emotionally. I could not wear my socks and shoes. I could not have a shower by myself… Not being able to go to prayers affected me very negatively, I had to be at home all the time. (Kandemir and Oskay 2017)

4.2.3. Theme 3: Lack of Knowledge

The patient's lack of knowledge about the disease is usually accompanied by a sense of fear. Lack of knowledge about stoma care also reduces the quality of life by bringing a series of complications. They are eager to be guided by professional knowledge to improve self‐care.

4.2.3.1. Sub‐Theme 1: Lack of Knowledge About the Disease

Patients' lack of knowledge about the disease demonstrates concern about healing, their own longevity and disease recurrence. Two studies have contributed to this sub‐theme (Villa et al. 2018; Zhao 2014).

If the cancer can't be cured even after the stoma operation and I've suffered so much, I don't want to live any longer. I don't want to live anymore. (Zhao 2014)

… [this] is the third tumor I have had… I'm afraid that sooner or later I'll get the right one which will fool me. Let's hope I can make it … I mean, to stay alive for the next ten years. (Villa et al. 2018)

4.2.3.2. Sub‐Theme 2: Lack of Knowledge About Self‐Care Skills

Patients are aware of the basics of stoma during hospitalisation, but after discharge from the hospital, they are still concerned about stoma complications due to inadequate self‐care in their daily lives. Four studies have contributed to this sub‐theme (Lu et al. 2015; Sharma et al. 2020; Villa et al. 2018; Zhao 2014).

I'm afraid to take care of this, which part of the wrong point may not be good, I've tried twice, once some bleeding, once urine seepage, now only count on the children. (Lu et al. 2015)

I don't know how to wear or change bag and also how to manage if a leakage occurs. (Sharma et al. 2020)

4.2.3.3. Sub‐Theme 3: Desire for More Specialised Medical Care Knowledge

Some patients would like to receive more specialised information and support from clinical staff, not just in relation to stoma care. Three studies have contributed to this sub‐theme (Sharma et al. 2020; Villa et al. 2018; Zhao 2014).

I want to know about the diet, how to change the urostomy bag and what is the frequency of bag changes and also can I lay in prone position? (Sharma et al. 2020)

I didn't have any difficulty… after the nurse came by the first time toshow me how to do it, she never came back, I did it by myself and I stilldo it now. (Villa et al. 2018)

Patients want to be supported by the entire health care and health insurance system, in addition to the professional knowledge of health care.

Staff is very less here. (Sharma et al. 2020)

4.2.4. Theme 4: Reinventing a New Life

4.2.4.1. Sub‐Theme 1: Adjust Mindset and Accept Reality

After a period of adaptation, the patient was able to accept the existence of the stoma and began to experience positive changes in his subjective awareness. Two studies have contributed to this sub‐theme (Jin 2013; Taylor et al. 2019).

My brother has colon cancer. Here's the bag. Compared to him, I think I am much luckier than him, at least the smell of urine in the bag is not as heavy as the smell of stool, and there is not so much gas in the bag, so it is easy to hide. (Jin 2013)

[It] has changed my life … this is nounderstatement but whether I like it or not, it isone that I will live with for the rest of my life. (Taylor et al. 2019)

4.2.4.2. Sub‐Theme 2: Starting a New Life

Through this surgery, the patient felt that he had gained a new life and appreciated more deeply the concern of his family and expressed his gratitude to them from the bottom of his heart.

The children are filial, and I am happy to be alive. I'm so happy to be alive. I'm just looking at my children. My aunt and son have given so much. I'm so happy to be alive. (Jin 2013)

I used to work overtime and socialize all the time, and I especially like to drink, but now I don't even want to drink anymore, and I live a regular life, and all my bad habits have changed. (Jin 2013)

5. Discussion

This study explores, compares and synthesises seven qualitative studies on the experiences of patients with permanent urostomies after bladder cancer surgery. Most previous research on urostomies has focused on the use of quantitative methods, emphasising functional outcomes or complications and has not provided a comprehensive understanding of the actual postoperative experience of patients with urostomies. After summarising and refining, we have consolidated four themes: Physiological change; Love and belonging; Lack of knowledge; Reinventing a new life. Through self‐adaptation and support from family, friends and healthcare professionals, patients eventually accept the change in body image and start a new life. This integration of experiences provides healthcare professionals with a comprehensive evidence base to better understand patients' actual conditions and develop necessary support strategies.

Some studies have shown self‐image is created by individual coping strategies, the use of social support systems and interaction with the environment (Fan et al. 2022). It suggests that when one aspect is compromised, there is a physical image disorder. Radical cystectomy is an effective treatment for bladder cancer, but the presence of a postoperative stoma changes the abdominal morphology and urination patterns of the patient, leading to a shift in self‐image. This is a complex psychosocial issue that involves multiple dimensions of patients' perceptions of their bodies, emotional responses and social interactions (Hopwood and Hopwood 2018). As a result of always wearing an ostomy bag, patients face challenges related to incomplete physiological functions, such as movement around the stoma and skin care. They are afraid to go out for exercise or travel due to fear of urine leakage after activities (Indrebø et al. 2023). They are reluctant to socialise due to fear of odour, and they require self‐care such as regularly changing stoma bags and protecting the stoma and surrounding skin (Martins et al. 2022; Russell 2017). These new changes not only increase patients' daily burden but may also affect their work and living arrangements. There are even adverse issues that are not conducive to psychosocial adaptation, such as loss of social interest, reduced work activities, deterioration of partner relationships and decreased contact with friends (Ayaz‐Alkaya 2019). Our research findings indicate that effective strategies for addressing physiological challenges and social isolation require a multifaceted approach. Comprehensive analysis reveals that the following key areas are crucial: providing psychological support through psychotherapy or mutual‐aid groups to help patients accept their body image; conducting professional training to master ostomy care skills and prevent complications; and promoting open communication between partners through sexual health counselling. Furthermore, the findings align with existing literature—maintaining a positive outlook and an active lifestyle contributes significantly to better health outcomes (Irwin 2008; Zion et al. 2019).

As a significant event in life, in addition to feeling helpless and stoma pain, patients also experience negative psychological emotions such as low self‐esteem, guilt, anxiety, depression and even suicidal tendencies in cases with severe issues (Bahlburg et al. 2024; Beaubrun En Famille Diant et al. 2018; Yu et al. 2023). The negative emotional reactions, such as helplessness, low self‐esteem, guilt and depression, can affect the patient's mental health and indirectly impact the patient's physiological function and daily life (Adolfo et al. 2022; Beaubrun En Famille Diant et al. 2018; Weiss et al. 2020). According to Albert Ellis' emotional theory, in this case, the emotional and behavioural consequences for the patient are negative. Beaubrun's research shows that impaired body image and self‐esteem can have negative effects (Beaubrun En Famille Diant et al. 2018). Negative emotions, physical limitations and impairment of social functions can lead to a decline in the quality of life of the patient (Wang et al. 2018). Therefore, it is important to help patients develop positive beliefs and offer suitable social and medical support to enhance their quality of life (Burch 2014; Slater 2010). Family support is at the core and most important position in the social support system, and the care of family members can alleviate the anxiety of patients and effectively promote their physical and psychological recovery (Gao 2012). In addition to moral support, families with family caregivers are closer and the cohesion of the family is enhanced through mutual support (Han et al. 2024). The findings of Xiaoyu et al. demonstrate how social support, such as family support and engagement in social activities, can mitigate the adverse effects of stressful life events (Yu and Liu 2021). The study by Klein GT et al. also points out that patients are eager to have a buddy system where patients could contact individuals who have gone through radical cystectomy and urinary diversion (Klein et al. 2021). Peers can offer emotional and practical support to patients. They can also act as reminders, supervisors and motivators in the patient's self‐care process, effectively improving the patient's illness and health (Watson 2019; White et al. 2020). Religious beliefs may also be an important way for patients to seek spiritual solace and spiritual support (Lo et al. 2002). For some patients, religion provides explanations and consolation beyond the material world, helping them cope with the difficulties and challenges of life (Hefti 2011). Several studies have found that patients who participated in religious activities exhibited higher life satisfaction and fewer depressive symptoms after surgery (Huang et al. 2012; Lim and Putnam 2010). Therefore, our research underscores the necessity of strengthening family communication and understanding, such as through organising structured family meetings or conducting educational activities. Furthermore, leveraging community resources and establishing peer support systems (‘buddy systems’) would be highly beneficial, as data indicates patients desire shared experiences. The role of spiritual care aligned with patients' beliefs should also be emphasised. Finally, these findings underscore the urgent need to refine social health insurance policies to alleviate financial burdens, while emphasising that holistic recovery requires the synergistic support of families, society and the healthcare system.

Nicole states that self‐care is the ability to look after oneself through awareness, self‐control and self‐reliance in order to achieve, maintain or promote optimal health and well‐being (Martínez et al. 2021). Orem's self‐care theory states that when an individual's self‐care ability fails to meet their self‐care needs, there is a lack of self‐care (Cox and Taylor 2005). Lack of relevant knowledge and skills often leads to inadequate self‐care and a less positive attitude towards self‐care (Panahi et al. 2018). Lack of knowledge about self‐care happens to be a common problem faced by urostomy patients (Cross and Schempp 2024). This includes a lack of understanding of how to properly change an ostomy bag, how to keep the skin around the stoma clean and dry and how to recognise and manage common complications. This can lead to patients feeling confused and upset after surgery, not knowing how to cope with their health condition. This ultimately leads to a reluctance to take care of themselves and to seek help from others. Stelton and Cross's research shows that many patients know little about stoma care after surgery, leaving them vulnerable to infections and other complications (Cross 2023; Bizzarri et al. 2025). A study by O'Flynn showed that some patients may not know when they should seek medical help or how to perform basic self‐monitoring at home (O'Flynn 2018; Stelton 2019). They aspire to receive professional healthcare and the guidance and support they need to better understand and cope with their condition. The widespread ‘knowledge gap’ observed in our study suggests that current patient education may be inadequate. To address this issue, findings indicate that nursing practice must move beyond the limitations of one‐time instruction. More effective solutions should include: conducting a comprehensive initial assessment of patients' self‐care capabilities; developing personalised, ongoing education plans utilising diverse formats (such as hands‐on practice, digital guides and blended online/offline guidance with feedback); and ensuring continuity of care through regular follow‐ups. Existing literature supports this perspective, with studies demonstrating that sustained professional support enhances patient autonomy and improves treatment outcomes.

Starting a great new life is an important goal of the postoperative experience for patients who have undergone total bladder removal with urostomy. Patients need to make self‐adjustments, accept reality and maintain a positive attitude towards the changes in their lives (Petersén and Carlsson 2021; Ross et al. 2007). This includes learning to accept their new physical state, adjusting their mindset and finding new meaning and purpose in life. For example, one study found that patients who were able to positively adjust their mindset and set new goals showed higher life satisfaction and better mental health after surgery (Mens and Scheier 2016). At the same time, patients should also explore and try out new ways of living, such as participating in social activities, developing hobbies or engaging in voluntary services. For example, some patients have found new friends and social networks through participating in support groups or community activities, thus enhancing their sense of social belonging and well‐being (Howard‐Jones et al. 2022). The theme of reshaping one's life underscores that successful adaptation is a dynamic process. Therefore, support services should facilitate this journey by providing resources such as psychological counselling and career planning workshops. Furthermore, proactively assisting patients in overcoming social barriers through activity recommendations, logistical support and transportation assistance is crucial; our comprehensive research indicates that community engagement is a key factor in enhancing well‐being. Finally, regularly assessing quality of life and psychological well‐being is vital for effectively developing personalised support plans throughout the adaptation process.

A key finding across all overarching themes is that the family serves as the central stage for the adaptation process. In home settings lacking professional support, the theme of ‘knowledge gap’ becomes particularly pronounced: patients must navigate complex self‐care tasks alone. This is not merely a clinical issue but a household‐level challenge: bathrooms effectively become treatment rooms, where patients must manage urine supply, waste disposal and potential leakage issues within what should be a comfortable, private space. Furthermore, the psychosocial themes of ‘physical changes’ and ‘love and belonging’ are deeply rooted in the home environment. Concerns about privacy breaches and odours may lead patients to withdraw within their homes, exacerbating tensions with family members. The home, meant to be a sanctuary, can instead become a battleground of anxiety and vigilance. Conversely, when patients successfully rebuild daily routines, redefine family roles and regain a sense of security and control at home, this ‘rebuilding a new life’ becomes a significant milestone. This underscores the need for medical interventions to extend beyond hospital walls—through structured home care, remote health monitoring and family training—to provide precise support within the patient's real‐life context.

5.1. Limitations

This meta‐synthesis has several limitations that should be considered when interpreting the findings. Firstly, there are many qualitative studies on stoma patients in the database, but few in the case of simple urinary tracts. Although some studies have included urinary tract stoma, there is no distinction between these and other types of stomas. The seven documents included in this study are from different countries and regions, but are clearly insufficient to show a complete picture of the life experience of patients with urinary tract stoma. The limited number of included studies (n = 7) restricts the conceptual saturation and transferability of our thematic framework. The scarcity of qualitative studies focusing exclusively on permanent urostomy patients means that some nuanced experiences, particularly those of specific sub‐groups, may not be fully captured. Furthermore, the general absence of fine‐grained demographic data in the primary studies precluded any meaningful exploration of how variables such as gender, age or socioeconomic status might moderate the central themes. Secondly, the consistent ‘moderate quality’ (JBI Score B) of all studies introduces a layer of uncertainty. Common shortcomings, such as insufficient documentation of the researcher's philosophical orientation or a lack of critical reflexivity, may subtly influence the depth and interpretation of the primary findings and consequently, our synthesis. Thirdly, our exclusion of mixed‐methods studies, intended to preserve methodological homogeneity, may have omitted rich, contextually embedded qualitative data. Furthermore, the limited diversity of qualitative methods incorporated into the studies (e.g., the predominance of phenomenology) may constrain the interpretive scope of the findings. It is recommended that future research introduce high‐quality mixed‐methods studies alongside diverse qualitative approaches. Fourthly, given that studies from China and Turkey constitute a significant proportion, cultural bias may be present. This limits the transferability of these findings to Western cultural contexts, where social structures, healthcare systems and individual beliefs about illness and care may differ substantially. Finally, the restriction to English and Chinese publications introduces a potential language bias, as valuable perspectives published in other languages may have been missed, leading to an incomplete synthesis of the global patient experience.

6. Conclusion

On the long path of the stoma, patients experience significant changes in their lives, including changes in their lifestyle, mental health, social interactions and family relationships. In the face of these changes, patients can only rely on themselves to gain expertise, including knowledge and rehabilitation skills, from a variety of sources. Therefore, patients can only adjust their mindset based on their own life experience and family help, forming their own way to meet the challenges in life and maintain a positive attitude to life.

Author Contributions

Study design: Jiang Zhao, Zhenqiang Fang and Yu Chen; Conceptualisation and co‐first author: Luqiang Zhou and Yu Chen, these authors contributed equally to this work. Xiaojuan Yuan, Fang Guo and Huan Feng retrieved literature for data extraction. Luqiang Zhou, Yan Li and Siyue Li conducted statistical analysis. Supervise: Zhenqiang Fang. All authors participated in the manuscript revision and read and approved the submitted version.

Funding

This research was supported by the Nursing Incubation Program of the Second Affiliated Hospital of Army Medical University (2023HLPY62), the Chongqing Municipal Subsidy for Maternal and Child Health Capacity—Obstetrics and Gynecology, the Discipline Talent Construction Project of the Second Affiliated Hospital of Army Medical University, the Humanities and Social Sciences Fund of Army Medical University (2024XRW12) and the Second Affiliated Hospital of the Army Military Medical University “Qingbo Program” Key Projects (2023YQB018).

Ethics Statement

This study was approved by the ethics committee of Army Medical University.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Appendix S1: Search strategy.

NOP2-13-e70517-s001.docx (13.5KB, docx)

Acknowledgements

This study was supported by a research grant from the Army Medical University.

Contributor Information

Zhenqiang Fang, Email: fangzhenqiang123@126.com.

Jiang Zhao, Email: urologyzhaoj@sohu.com.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Appendix S1: Search strategy.

NOP2-13-e70517-s001.docx (13.5KB, docx)

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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