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Research Paper
A qualitative meta-synthesis of the essence of patient experiences of dialysis
Soyoung Jang1orcid, Eunyoung E. Suh2orcid, Yoonhee Seok1orcid
Journal of Korean Academy of Nursing 2025;55(1):119-136.
DOI: https://doi.org/10.4040/jkan.24102
Published online: February 19, 2025

1College of Nursing, Kyungil University, Gyeongsan, Korea

2Center for World-Leading Human-Care Nurse Leaders for the Future by Brain Korea 21 (BK21) Four Project, College of Nursing, Research Institute of Nursing Science, Seoul National University, Seoul, Korea

Corresponding author: Eunyoung E. Suh Center for World-Leading Human-Care Nurse Leaders for the Future by Brain Korea 21 (BK21) Four Project, College of Nursing, Research Institute of Nursing Science, Seoul National University, 103 Daehak-ro, Jongno-gu, Seoul 03080, Korea E-mail: esuh@snu.ac.kr
• Received: August 20, 2024   • Revised: October 24, 2024   • Accepted: January 3, 2025

© 2025 Korean Society of Nursing Science

This is an Open Access article distributed under the terms of the Creative Commons Attribution NoDerivs License (http://creativecommons.org/licenses/by-nd/4.0) If the original work is properly cited and retained without any modification or reproduction, it can be used and re-distributed in any format and medium.

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  • Purpose
    This study aimed to understand the experiences of dialysis and their meaning among patients with chronic kidney disease through a meta-synthesis of the existing literature. Since 2010, the prevalence of end-stage renal disease has doubled in South Korea, which has the sixth-highest incidence worldwide. Although most kidney disease patients undergo dialysis to attenuate disease-related symptoms and prolong their lives, the implications of dialysis on their lives, together with the role played by patients’ significant others, remain underexplored. Similarly, existing research has not considered both patients with hemodialysis and peritoneal dialysis.
  • Methods
    In this meta-synthesis, seven electronic databases (PubMed, CINAHL, EMBASE, PsycINFO, DBpia, KISS, and RISS) were searched for the terms “dialysis” and “qualitative.” Thirty qualitative studies were selected for examination.
  • Results
    The overriding theme observed in the studies was “I do not have much time left.”–navigating the dual realities of one’s limited existence, while other key themes were: (1) the inevitable experience of the troubles of dialysis, (2) life is extended, but deteriorating in every aspect, (3) accepting dialysis with a positive outlook for life, and (4) essential support experienced in an exhausting life.
  • Conclusion
    These findings are important for the design and delivery of practical and tailored nursing interventions to help patients overcome the various challenges related to dialysis treatment, and improve their quality of life.
  • Key words: Dialysis; Life change events; Nurses; Qualitative research; Review
The prevalence of chronic kidney disease is steadily increasing in the United States of America owing to its aging population and an increase in chronic diseases such as diabetes, hypertension, and heart disease [1]. End-stage renal disease refers to the final stage of chronic kidney disease, a stage at which patients require renal replacement therapy to survive—that is, they must undergo either dialysis or a kidney transplantation. Worldwide, the number of people receiving renal replacement therapy is expected to double by 2030 (5.439 million), in comparison to 2010 figures (2.618 million) [2]. Based on data published in 2020 from the United States Renal Data System [3], nearly 786,000 Americans had end-stage renal disease, of whom 71% were undergoing dialysis and 29% were undergoing kidney transplantation. Meanwhile, in South Korea, the prevalence of end-stage renal disease has doubled since 2010, and the country was described in a recent study as having the sixth-highest incidence worldwide [4]. Furthermore, the Korean Society of Nephrology [5] reported that among end-stage renal disease patients in South Korea, 81.0% were undergoing hemodialysis, 15.1% were undergoing kidney transplantation, and 3.9% were undergoing peritoneal dialysis.
These figures make clear that most patients with end-stage renal disease in the United States of America and South Korea undergo dialysis, which serves to reduce disease-related symptoms and prolong their lives. In other words, dialysis has become a tool for preventing complications, managing the disease, and is an essential part of patients’ lives. Research has shown that the selection process for the pre-dialysis modality has a significant impact on the values of patients and their families, as well as on the context of their lives [6]. While dialysis has such an important and sometimes positive impact on patients’ lives, dialysis patients also have a much higher mortality rate and lower quality of life than transplant patients [7,8]. Research has also reported that patients on dialysis are constrained by time distribution, financial burdens, medication administration, fluid and dietary restrictions, and prolonged dialysis implementation [9]. They also experience psychological effects such as uncertainty about the future, loss of role, fear of death, depression, a dependent life, social isolation, and social changes in family roles [10,11]. Since these factors affect patients on dialysis in various ways, there is growing social concern about supporting these patients in maintaining life balance and improving their quality of life [12].
Considering that patients undergoing chronic dialysis face complicated and diverse situations, nurses must pay attention to patients’ physical symptoms and daily experiences, including their and social environments. Furthermore, to deliver proper care and gain a clear understanding of patients, nurses must explore patients’ sociocultural contexts, beliefs, values, and relationships with others [13]. These actions enable nurses to provide person-centered care and design systematic nursing interventions.
Previous studies have evidenced the changes surrounding the daily life of dialysis patients, suggesting appropriate interventions. More specifically, various qualitative studies have focused on patients’ experiences of dialysis and related processes, such as perceived social support; stressors and coping strategies; self-growth; efforts to survive; the effect of family, physical and psychological changes [14-17]. For example, one study classified dialysis patients’ suffering into four categories, namely physical, psychological, social, and spiritual [18]. Elliott et al. [19] showed changes in quality of life as patients underwent the dialysis process. Another study showed various “senses of self” of individuals living with hemodialysis [20].
While qualitative research is an effective approach for exploring people’s lived experiences and situational contexts in depth [21], there remains an absence of an inclusive and general interpretation regarding the experiences of dialysis patients, one that integrates the different qualitative research findings. Paterson et al. [22] developed a method for synthesizing qualitative studies, aiming to connect the results of individual qualitative studies and provide a basis for knowledge. This method was named meta-synthesis, and rather than simply providing a sum of the individual parts analyzed, it delivers novel, integrated findings on the phenomena of interest [23], synthesizing the existing and fragmentary research findings to build a new body of knowledge [24].
Although the many individual qualitative studies allow us to profoundly understand the experiences of dialysis patients, a comprehensive interpretation of the available evidence may only be achieved by analyzing the different phenomena consistently featured across these singular studies. There have been a few meta-synthesis studies on the experiences of dialysis patients [25,26], and a meta-synthesis has been conducted focusing on hemodialysis patients [25]. Nonetheless, these studies have not identified the life experiences of dialysis patients while considering both hemodialysis and peritoneal dialysis, nor have the extant meta-synthesis studies thoroughly analyzed the implications of dialysis on patients’ lives and the role of significant others.
Accordingly, this study aimed to understand the meaning and experience of dialysis in the lives of patients with chronic kidney disease through a comprehensive interpretation of the existing evidence using a meta-synthesis. The study question was “What are the experiences of patients undergoing dialysis?” The findings of this study are expected to contribute to improving the quality of life of patients undergoing dialysis by enabling the design of consistent and tailored nursing interventions, and the appropriate training of nurses to deliver such procedures with efficacy and efficiency.
This meta-synthesis study was conducted using an interpretive integration method based on the work of Sandelowski and Barroso [27], aiming to understand the various experiences of patients with dialysis and chronic kidney disease. Meta-synthesis is a method that delivers novel, integrated findings on the phenomena of interest rather than simply providing a sum of the individual parts analyzed. Following the guidance of Sandelowski and Barroso [27], the synthesis process unfolded as described below.
First, a meta-synthesis must identify qualitative studies investigating the same research topic, and select those that can be synthesized. Second, a quality appraisal is performed on the selected studies according to specific criteria. Third, themes are extracted by interpreting and classifying the results of each study. The outcome of this process is a novel interpretation of the extant and available findings [28], as the explanations derived through a comprehensive meta-synthesis of the literature cannot be extracted from any single research [29].
1. Eligibility criteria
The inclusion criteria for studies in this review were as follows: (1) published between 2005 and 2020 to reflect emerging trends since the last meta-synthesis; (2) participants aged over 18 years; (3) participants undergoing dialysis regardless of the dialysis modality; (4) published in English and Korean (no country restriction); and (5) using any qualitative study methodology methodologies. The exclusion criteria were (1) use of a quantitative methodology, (2) unsuitability for the aim of this study, (3) featuring participants who did not start dialysis, and (4) use of secondary analysis.
2. Information sources and search
The researcher searched four databases (PubMed, CINAHL, EMBASE, and PsycINFO) for foreign studies and three databases (Database Periodical Information Academic, also known as DBpia, Koreanstudies Information Service System, also known as KISS, and Research Information Sharing Service, also known as RISS) for domestic studies. The database search terms were as follows: (“dialys*” OR “hemodialys*” OR “peritoneal dialys*”) AND (“qualitative stud*” OR “qualitative research*”). The search strategy was presented in Appendix 1. As mentioned above, only studies published in the English or Korean language and during the 2005–2020 period were included.
3. Study selection
A total of 1,599 studies were identified in the search. After excluding 512 duplicates, the titles and abstracts of the remaining studies (n=1,087) were assessed according to the inclusion criteria, resulting in the exclusion of 889 more studies. Full-text reviews were conducted for 198 studies, of which 168 studies were excluded for the following reasons: population criteria not met (n=45), design incompatibility (n=6), and research phenomena misalignment (n=117). Finally, 30 studies were selected for the meta-synthesis (Figure 1).
4. Quality appraisal
The Critical Appraisal Skills Programme (CASP) checklist [30], widely used to assess the quality of studies according to the research design, was used to evaluate the quality of the 30 selected studies. The CASP checklist consists of 10 items answered on a three-point scale of “yes” (Y), “can’t tell” (C), and “no” (N). The quality appraisal process was conducted transparently, with researchers independently reviewing the studies and resolving discrepancies through discussion until consensus was achieved. This iterative approach ensured rigor in the evaluation process. No study was excluded based on the quality assessment (Table 1).
5. Data extraction and synthesis
At the beginning of data extraction, the researchers repeatedly read the 30 selected studies. Basic information (e.g., purpose, participant characteristics, modality of dialysis, methodology, and findings) was extracted from each study and is presented in Table 2. Each researcher then analyzed the individual studies by contrasting, comparing, and combining them in an organized table. Relevant quotes and contexts were reviewed, with similar meanings grouped into clusters. These clusters were further synthesized into representative themes through iterative discussions to ensure accuracy and consistency. Any discrepancies in theme generation were collaboratively resolved. Finally, the concepts were aggregated into new categories. Based on these newly generated concepts, the meta-synthesized themes are presented. The list of articles used in the meta-synthesis is provided as an Appendix 1, and the articles are cited in the results below as A1, A2, and so forth.
1. Study characteristics
The quality assessment using CASP yielded 19 studies with a 100%, 10 studies with a 95%, and one with a 90% rate. The reviewed studies included 418 participants, consisting of 396 patients, 17 nurses, and five family caregivers. Among the 30 studies, 27 reported on participant gender (women, 43%; men, 50%; these percentages do not consider care provider gender). The patient age range was 20–90 years, and mean age (reported in 13 studies) ranged from 37 to 82.5 years. Analytical methods included Colaizzi’s method [A4, A6, A15, A17, A21, A24] (six studies), thematic analysis [A3, A5, A7, A12, A14, A26] (six studies), and others such as phenomenology, Giorgi’s method, and grounded theory.
2. Synthesis of findings
The findings showed one overriding theme: “I do not have much time left.”–navigating the dual realities of one’s limited existence. The meta-synthesized core essence of the patients’ dialysis experience is that they showed an ontological awareness of their own ephemeral existence. It is assumed that the repeated and ongoing agony of receiving dialysis deepened the patients’ awareness of such ephemerality. At the same time, even amid such difficulties, patients found positive meaning, accepted their situation, and lived each day with a grateful heart. Four main themes were identified under the overriding theme, as follows: (1) the inevitable experience of the troubles of dialysis; (2) life is extended, but deteriorating in every aspect; (3) accepting dialysis with a positive outlook for life; and (4) essential support experienced in an exhausting life (Table 3). Each main theme is explored below.

1) The inevitable experience of the troubles of dialysis

Patients chose dialysis mostly because they had no choice, and most wanted to live for as long as possible. However, the dialysis-related tasks were challenging; not only were the troubles continuous, but patients also felt that their body function was weakening overall. In addition, most patients were unable to maintain their relationships as they were before dialysis onset.

(1) Facing lifelong hindrances out of nowhere

Many patients lamented their dependence on a dialysis machine and its tubes. A few patients had to go to the hospital to receive hemodialysis, and spent almost 4 hours in bed [A15, A24, A29]. One participant said, “My life is not under control; we are dependent on the hemodialysis machine. Three days per week, [for] 4 hours, we are under the control of these two tubes, which can be disconnected with any little move. It is really tiring.” [A15].
While patients were undergoing dialysis, they were stuck and could not go anywhere [A15, A28], with some participants expressing the following, “…If you want to go out a little, it is very hard. Trouble is, you get stuck in the house like a prison.” Hence, patients did not have holidays, generally could not travel, and did not have much freedom. Once they became aware of their health problems, they realized that their lives would depend on the dialysis treatment, which would be an endless journey [A19, A30].

(2) Spend endless time and energy on dialysis

After starting dialysis, patients spent a significant amount of time on the treatment [A12]. One participant said, “It is impossible to do anything else that day…it is totally killed. I always have afternoon dialysis except for Sundays, when I go there at 6:45, and then that day is ruined.” Moreover, in treatment days, patients had no energy to do anything else, as a participant remarked: “I have a wish to go out for a walk or to run a little bit. Before, I walked a lot in the forest, but I cannot now because I do not have the energy and no balance at all.”

(3) Living in a shrinking world of isolation

After beginning the dialysis treatment, patients reported that they could no longer maintain their relationships with family, friends, and social groups as usual. Specifically, they felt that they could no longer perform their roles, and depended on others for many aspects of their everyday lives. On treatment days, they felt exhausted and like they could not do anything with their family and friends [A1], with one participant stating that she had never been out with her children on vacation [A7]. Another participant never attended a school orientation for her daughter [A6], and there was a general avoidance of social gatherings because of people’s tendency to ask questions about their appearance [A2]. This made patients distance themselves from others, as in the following example: “For my world, it has become smaller. My world is like me, nurses, hospital, doctors, antibiotic, operation room, like this, now extra... the dialysis. My world… I got no more.” [A9].

2) Life is extended, but deteriorating in every aspect

The reviewed studies showed that patients tried to live their daily lives while depending on dialysis, although this entailed various limitations. Patients felt that they did not have enough time to live because their physical condition had worsened, and this took a toll on their time availability.

(1) The time and energy left are limited

Patients described that the dialysis treatment would last for a long time, feeling like their bodies were being invaded by the treatment and that they were getting weaker [A3, A13]. “It doesn’t end, this, because it will go on and on and on, and I will never get well, I will never escape the dialysis...” One patient said that although he can live more, he does not want to continue to suffer as his life extends [A4]. Others felt their bodies getting weak, and their lives changing because of dialysis [A17, A27]. They also constantly confronted their fear of death because the treatment does not give them any life security [A2, A17].

(2) Back and forth of frustration with dialysis

Various pieces of evidence in the studies demonstrated numerous dialysis-related challenging moments, which kept many patients disappointed and frustrated. Some participants said that controlling their diet was the most difficult aspect of treatment [A2, A6, A30], and that they were constantly cautious about eating, including drinking water. Furthermore, some participants felt as if they were unable to eat regular human food [A2, A6]. Other participants reported that, as the treatment went on, they became more easily tired after dialysis procedures [A22, A23], such as in the following quotation: “Before, I used to feel normal after undergoing dialysis. Now, however, I just feel tired and weak. I now need more time to recover. I no longer have the energy to do anything, talk, walk, or communicate. I have lost interest in everything. My life now just consists of dialysis and other medical treatments. I am in hospital almost all the time…” [A22].

3) Accepting dialysis with a positive outlook for life

Despite the difficulty in becoming accustomed to undergoing dialysis, many patients were aware that they could not escape this fate [A9]. Most patients tried not to complain about their situation, even as they continued to experience daily suffering, and some tried to uphold a mindset of gratitude for their current lives.

(1) Taking dialysis as a part of life through adapting and balancing

After patients had been on dialysis for several years, they started to get accustomed to the treatment [A11], with one person saying that, “It feels like a regular work from 7 to 5; there is no option, I just have to do it, even if it is Christmas Eve, New Year’s Eve, it doesn’t matter…it is just something that I have to do.” A few patients placed dialysis as an essential part of their everyday lives [A7, A14, A16, A19, A24]; after all, they changed their lifestyles to focus on the treatment. Many patients stated that it was helpful for them to have a positive and healthy attitude toward the treatment and life. Additionally, while it was difficult to accept, patients recognized that dialysis was the best choice for their body [A16]. Many patients also accepted their fate, considered the situation as a blessing, and tried to enjoy their lives [A3, A13, A14, A18, A22, A24, A25, A26, A30].

(2) Being thankful for living day by day right now

Some patients stated that, although they were undergoing the challenging dialysis process, they developed a mindset of gratitude for their current lives [A2, A24, A27]. Specifically, patients continued to feel a significant burden about the prospect of undergoing dialysis for the rest of their lives, but also found happiness in having realized the value of everyday life, which they had previously overlooked, and in the simple fact that they could live each day as it was [A15, A25]. “I do not think of my distant future, about how long I will live. What is important to me is living the present better. Death tells me how to live today. It shows the meaning of my life.” [A6].

4) Essential support experienced in an exhausting life

When patients faced challenging situations, they reported that they could not overcome them alone. Nevertheless, specific people supported these patients and remained by their side during such times. Most studies in this review included patients who received support and help from people in their lives, which was meaningful and invaluable.

(1) Having practical assistance for sustaining health by family and nurses

Family members were often beside the patients, supporting them [A21, A28], with one patient even stating that family members took the initiative to educate themselves and solve problems for him [A21]. This support enabled patients to consistently maintain the dialysis treatment. Above all, prior to undergoing dialysis and during treatment, patients were often unaware of dialysis treatment plans, food restrictions, social lifestyle changes, and other aspects of the condition. Accordingly, patients expressed their gratitude to the nurses for their kind responses to their questions, recognizing the helpfulness and significance of their work [A23, A24].

(2) Living with support, encouragement, and shared emotion by others

Most patients were touched by the sacrifice and love of their family members [A4, A7, A30], with one in particular saying that he was alive because of his wife, as she cared for him without showing any unpleasantness whenever they got into trouble [A7]. In addition, patients reported that healthcare providers consistently treated them well and were ready to help [A2, A9, A16, A28]. Although the dialysis treatment was difficult, patients felt that the place where they were treated was like their second home [A2, A6, A28]. One participant said, “The nurses are very supportive. There is a young nurse who cracks jokes and makes me laugh. The nurses can help a lot in making the patients less anxious about their condition by creating a high-spirited environment…” [A1].
As they met regularly, a few patients felt that the staff members were like their family or friends [A27, A28]. Dialysis patients also tended to need a lot of support and encouragement, which they fortunately and sincerely received from meaningful people in their lives [A27].
This meta-synthesis was conducted to identify the core essence of patients’ experiences of dialysis. The elicited overriding theme, namely “I do not have much time left”–navigating the dual realities of one’s limited existence, revealed that the continued predicaments related to dialysis treatment made patients reflect on their own life and existence. This reflection and the gradual, daily, and often deteriorating changes they experienced, reminded them of their finiteness. The findings highlight that patients faced inevitable challenges, experienced deterioration in every aspect of their lives, accepted dialysis with a positive outlook for life, and received essential and practical assistance from significant others.
The theme “the inevitable experience of the troubles of dialysis” showed that most patients in the reviewed studies were undergoing dialysis for the first time, meaning that they suddenly had to face the fact that dialysis was a lifelong hindrance—one on which they would have to continuously spend time and energy. The findings of this review are consistent with those of previous studies [25,31]. A few participants felt sorry for their families because of a perception of themselves as now being inadequate parents or partners [32,33].
Patients reportedly had limited relationships with their families and friends. The findings related to this topic in the current study are similar to those of previous studies [25,31,34]. Especially in light of today’s “small world,” wherein we can quickly and seamlessly travel across the globe, the inability to travel freely is a discouraging situation for patients [10,35]. Furthermore, appearance changes made patients feel a little distant from others [35].
While dialysis patients experience a variety of challenges during treatment, healthcare professionals often focus solely on their physical condition in clinical practice. Nurses should consider the diverse contexts and circumstances of each patient and implement strategies for integrative nursing interventions that address both internal and external difficulties. Furthermore, nurses must provide information and education that reflect the patient’s individual situations. This approach can aid in developing a personalized treatment plan and help patients overcome dialysis-related challenges.
The “life is extended, but deteriorating in every aspect” theme focuses on the limitations and deteriorations that patients with dialysis experience, and on how they lived their lives on a day-to-day basis because of a lack of knowledge about own future. They could live longer than those who did not accept dialysis treatment, but also knew of the absence of guarantees and that the treatment was a temporary extension [18,36,37]. In other words, they lived with the fear of unpredictability. Moreover, patients with dialysis faced challenging moments as they experienced physical and psychological stressors (e.g., diet restriction, hopelessness, and depression). Research showed that people perceive that they need to modify their usual social activities before starting dialysis [16,18]. Thus, while dialysis extends one’s life, the person’s physicality, emotionality, and sociality are hindered, making it key for healthcare professionals to give attention to patients’ physical changes and emotional and social deficits. Nurses can teach patients positive coping strategies during this period to help reduce stress and alleviate fears about an uncertain future. Additionally, it is important to encourage patients to engage with social support systems to maintain social activities and offer practical assistance to participating in support groups, whether in hospital or the community. Such emotional and social support can aid patients in adapting to life with dialysis.
This study also unveiled the theme of “accepting dialysis with a positive outlook for life” Humans are conscious of the limitations of life before death, and are also the only beings that can continue to live even when experiencing limited lives [38]. Knowing that they could not escape dialysis, patients in the reviewed studies tried to acknowledge and adapt to their fates [39-41]. Over time, they accepted the need for dialysis in their lives, and that it came with challenging procedures and physical and psychological stressors. These processes are similar to those reported in the studies by Axelsson et al. [36] and Cho and Shin [32]. Patients also appreciated the reality that dialysis allowed them to live another day, and it is meaningful that patients began to feel newfound gratitude for their current, normal lives as they began to have a clearer perception of their finite existence. During this period, nurses can educate patients on self-care techniques related to dialysis, helping them manage their health in daily life. This plays a crucial role in enabling patients to maintain independence and enhance their quality of life. Additionally, nurses can assist patients in setting and achieving long-term life goals, even while undergoing dialysis, which can help them regain a sense of meaning and purpose in life.
The last theme found in this study was “essential support experienced in an exhausting life,” which focuses on how patients received practical and sustainable help from their families and nurses, in line with findings from past research [39,42,43]. Still, one study showed that nurses tended to focus on patients’ physical aspects, and did not provide enough support [14]. As such, being an invasive and complicated procedure that influences patients’ physical and psychological aspects, dialysis treatment requires support, encouragement, and consistent concern from meaningful others (e.g., family, nurses, and caregivers). In particular, information sharing, explanations of the treatment process, emotional support, and constant care from nurses were reported by patients as effective measures in overcoming challenges accompanying the treatment. This also explains why patients thought that the dialysis facility became their second home [44]. Several qualitative studies have provided similar results, showcasing that the relationship with healthcare professionals was one of the most prominent factors in overcoming negative emotions related to dialysis [45,46]. This evidence highlights the need for nurses to consider their patients’ behaviors and situations when devising appropriate interventions. To achieve this, first, managerial stakeholders must invest in dialysis facilities and improve the treatment spaces to make them more comfortable and patient-centered. Additionally, they should develop programs to train nurses in integrating knowledge, nursing skills, and communication competencies more effectively; second, nurses should be equipped with the capacity of tailoring nursing interventions to their care recipients, so that they can be empowered to deliver practical and sustainable assistance.
This study has several limitations. First, it relied on two keywords to identify relevant studies. These keywords were selected based on previous literature to ensure comprehensiveness and relevance to the study’s purpose, minimizing the risk of excluding potentially relevant studies. However, this approach may have limited the scope of the search. Future research should expand the keyword list and employ advanced search strategies to ensure broader inclusivity. Second, the study included only qualitative research published in English and Korean with a specific time frame. Finally, we did not divide the investigation according to specific patient characteristics such as age, gender, and dialysis modality. This can be addressed in future meta-syntheses, together with an examination of studies published in other languages and years, aimed at identifying the peculiarities of different populations.
This meta-synthesis focused on the influence of dialysis on patients’ lives and their relationships with their significant others, identifying that these patients perceive their lives to be changeable and delicate. The main themes extracted were (1) the inevitable experience of the troubles of dialysis; (2) life is extended, but deteriorating in every aspect; (3) accepting dialysis with a positive outlook for life; and (4) essential support experienced in an exhausting life. Meanwhile, the overriding theme was “I do not have much time left.”–navigating the dual realities of one’s limited existence. As patients struggled with the series of internal processes and external procedures they had to endure, they were also aware of the limitedness of their existence across various life dimensions. Nevertheless, patients also found positive meaning in these challenges, embraced the situation, and strived to live each day with gratitude. It is thus important for nurses to provide more practical and tailored interventions to deliver appropriate support for patients, such that the latter can overcome the various challenging situations accompanying dialysis. Achieving this and improving patient quality of life may require nurses to comprehensively understand patients’ experiences with dialysis, and competently deliver tailored care.

Conflicts of Interest

No potential conflict of interest relevant to this article was reported.

Acknowledgements

None.

Data Sharing Statement

Please contact the corresponding author for data availability.

Author Contributions

Conceptualization or/and Methodology: SJ, EES. Data curation or/and Analysis: SJ, EES, YS. Funding acquisition: none. Investigation: SJ, EES. Project administration or/and Supervision: SJ, EES. Resources or/and Software: SJ, YS. Validation: SJ, EES. Visualization: SJ, EES. Writing: original draft or/and Review & Editing: SJ, EES, YS. Final approval of the manuscript: SJ, EES, YS.

Fig. 1.
Flow chart showing study selection process.
jkan-24102f1.jpg
Table 1.
Critical appraisal skills program evaluation of the studies (N=30)
Article no. Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 %
A1 Y Y Y Y Y Y Y Y Y Y 100
A2 Y Y Y Y Y C Y Y Y Y 95
A3 Y Y Y Y Y C Y Y Y Y 95
A4 Y Y Y Y Y Y Y Y Y Y 100
A5 Y Y Y Y Y C Y Y Y Y 95
A6 Y Y Y Y Y Y Y Y Y Y 100
A7 Y Y Y Y Y C Y Y Y Y 95
A8 Y Y Y Y Y C Y Y Y Y 95
A9 Y Y Y Y Y C C Y Y Y 90
A10 Y Y Y Y Y Y Y Y Y Y 100
A11 Y Y Y Y Y Y Y Y Y Y 100
A12 Y Y Y Y Y Y Y Y Y Y 100
A13 Y Y Y Y Y C Y Y Y Y 95
A14 Y Y Y Y Y Y Y Y Y Y 100
A15 Y Y Y Y Y Y Y Y Y Y 100
A16 Y Y Y Y Y Y Y Y Y Y 100
A17 Y Y Y Y Y C Y Y Y Y 95
A18 Y Y Y Y Y Y Y Y Y Y 100
A19 Y Y Y Y Y C Y Y Y Y 95
A20 Y Y Y Y Y Y Y Y Y Y 100
A21 Y Y Y Y Y C Y Y Y Y 95
A22 Y Y Y Y Y Y Y Y Y Y 100
A23 Y Y Y Y Y Y Y Y Y Y 100
A24 Y Y Y Y Y Y Y Y Y Y 100
A25 Y Y Y Y Y Y Y Y Y Y 100
A26 Y Y Y Y Y Y Y Y Y Y 100
A27 Y Y Y Y Y Y Y Y Y Y 100
A28 Y Y Y Y Y C Y Y Y Y 95
A29 Y Y Y Y Y Y Y Y Y Y 100
A30 Y Y Y Y Y Y Y Y Y Y 100

Q1. Was there a clear statement of the aims of the research? Q2. Is a qualitative methodology appropriate? Q3. Was the research design appropriate to address the aims of the research? Q4. Was the recruitment strategy appropriate to the aims of the research? Q5. Was the data collected in a way that addressed the research issue? Q6. Has the relationship between researcher and participants been adequately considered? Q7. Have ethical issues been taken into consideration? Q8. Was the data analysis sufficiently rigorous? Q9. Is there a clear statement of findings? Q10. How valuable is the research?

C, can’t tell; N, no; Y, yes.

Table 2.
Summary of studies in the systematic review
No. Author (year) Purpose Research design Participants Age (yr) Data analysis/data collection Results
A1 Achempim-Ansong et al. (2012) To explore the psychosocial and physical experiences of hemodialysis patients Explorative descriptive qualitative research 10 Patients 20–65 Content analysis/ • Psychological experiences (anxiety, depression, anger, worrying, fear of death)
Semi-structured interviews • Social experiences (intentional isolation, inability to attend social functions, effect of dialysis on marriage)
• Economic encounters (difficulty in financing the treatment, loss of income, lowered productivity)
• Physical experiences (problems with sleeping, with fluid and diet restrictions, with accessing the treatment site)
A2 Axelsson et al. (2012) To describe and to elucidate the meanings of being severely ill and living with hemodialysis when nearing end of life Phenomenology 8 Patients: M (5), F (3) 66–87 (mean: 78) Structural analysis/ • Being subordinate to the deteriorating body
Serial qualitative interviews • Changing outlook on life
• Striving for upheld dignity
A3 Beng et al. (2019) To explore the experiences of suffering in end-stage renal failure patients who are on maintenance dialysis Qualitative study 19 Patients: M (15), F (4) 30–60 Thematic analysis/ • Physical suffering: physical symptoms, functional limitations
Semi-structured interviews • Psychological suffering: the emotions of suffering, thoughts of suffering
• Social suffering: healthcare-related suffering, burdening of others
• Spiritual suffering: the queries of suffering
A4 Calvey et al. (2011) To step into the lives of seven patients once they were outside the dialysis unit Phenomenology 7 Patients 29–60 Colaizzi’s method/ Major theme: sense of self
In-depth semi-structured interviews • The future self: an uncertain future, lost dreams, future hopes
• The living self: bodily self, mental self, functional self, social self
• The mortal/fragile self
• The growing/learning self
A5 Chiaranai (2016) To better understand the daily life experiences of Thai patients with end-stage renal disease who are on HD Descriptive phenomenology 26 Patients: M (8), F (18) 48–77 Thematic analysis/ • Facing life’s limitations: a decrease in physical activity, a narrowed social life, dealing with emotional change such as anger, guilt, depression, unhappiness, spend hidden cost related to HD treatment
Semi-structured interviews • Living with uncertainty: fear of death, do not know future, being scared, feeling insecure that HD treatment will not last for long
• Dependence on medical technology: HD treatment is too important to ignore, feeling save while undergoing HD treatment, HD unit is the familiar place, strictly adhere to HD treatment, cannot live without HD machine
A6 Cho et al. (2016) To understand and develop helpful realistic nursing interventions, we interviewed hemodialysis patients of different genders, who have survived more than 20 years, regarding what their survival experiences meant for them. Phenomenology 5 Patients: M (3), F (2) 37–67 (mean: 53) Colaizzi’s method/ • Lifelong nasty disease beginning with ‘surely not’
In-depth interviews • Searching for myself on boundary of life and death
• Fixed ideas regarding gender differences corrected by the power of the family
• Living from survival to hope
A7 Clarkson et al (2010) To explore the lived experience of patients with end-stage renal disease Qualitative study 10 Patients: M (5), F (5) 26–85 Thematic analysis/ • Lifestyle changes: restricted life, limitations, body/mind/sprit challenges
Interview • Coping: support, family, friends, support group, God, prayer, church
• Areas lacking: health management, education, preparing the next generation
A8 da Silva Junior et al. (2015) To recognize the meaning of hemodialysis for patients with chronic renal failure Descriptive qualitative research 12 Patients: M (5), F (7) 24–68 Symbolic interactionism/ Semi-structured interviews Central category: dialysis for chronic renal disease carrier
• Meaning of hemodialysis
• Experience with the treatment hemodialysis
• The social interactions of patients in
A9 Hagren et al. (2004) To examine how patients suffering from chronic kidney disease on maintenance hemodialysis experience their life situation Qualitative study 41 Patients: M (26), F (15) 29–86 (mean: 67.5) Content analysis/ • Not finding space for living: struggling with time-consuming care, feeling that life is restricted
Semi-structured interviews • Feeling evoked in the care-situation: sense of emotional distance, feeling vulnerable
• Attempting to maintain manageability of restricted life
A10 Herlin et al. (2010) To describe how HD patients, between 30 and 45 years of age, experience their dependence on HD treatment Phenomenology 9 Patients: M (5), F (4) 30–44 (mean: 37) Giorgi’s method/ Major theme: the total lack of freedom
Semi-structured interviews • A sense of fear, dependency on caregivers, time lost in dialysis, feelings of loneliness, being on a waiting list for a kidney transplantation
A11 Jonasson et al. (2017) To describe changes in life for patients with renal failure undergoing hemodialysis Qualitative descriptive study 9 Patients: M (5), F (4) 41–90 Content analysis/ • From liberty to captivity: limitations, dependency
Semi-structured interviews • Adjusting to the new life: to exist during hemodialysis, hope
• The new life moving towards reconciliation: gratitude, acceptance
A12 Jones et al. (2017) To obtain UK National Health Service patients’ perspectives on the challenges arising from hemodialysis with the intention of identifying potential improvements Qualitative study 20 Patients: M (8), F (12) 55–88 (mean: 74) Thematic analysis/ • Fluctuations in cognitive/physical well-being across the HD cycle
Semi-structured interviews • Restrictions arising from the HD treatment schedule
• Emotional impact of HD on the self and others
A13 Karamanidou et al. (2014) To explore the experience of renal patients undergoing dialysis treatment focusing on beliefs about their illness, prescribed treatment, and the challenge of adherence Phenomenology 7 Patients: M (3), F (4) 32–68 Interpretative phenomenological analysis/ • Patients have a range of beliefs
Semi-structured interviews about their illness and their treatment consistent with the self-regulatory model of illness, that is, identity, cause, consequences, timeline, and cure.
A14 Kazemi et al. (2011) To explore the experiences of social interactions in the daily life of Iranian persons who were receiving hemodialysis Descriptive, exploratory study 21 Patients: M (12), F (9) 24–74 (mean: 45.2) Thematic analysis/ • Living with fatigue, changes in self-image, patients’ dependency on the device, place and time of hemodialysis, hiding the disease
Semi-structured interviews
A15 Kim et al. (2017) To understand the experience of reconstructing life through hemodialysis in chronic renal failure patients and to clarify the meaning of their vivid experience Phenomenology 8 Patients: M (4), F (4) 30–60 Colaizzi’s method/ • The beginning of unexpected difficulties
Individual in-depth interviews • Burden of survival brought on by hemodialysis
• The driving force of recovery
• Choices and concentration of today in order
• Everyday life which must be woven sincerely
A16 Krueger (2009) To explore Hmong experiences with hemodialysis as well as the experiences of nurses working with these Hmong patients Qualitative study 4 Patients: M (4) and 17 nurses: F (17) NM Correlation analysis/ • Overwhelming sadness was the most consistent theme. Sadness resulted physical symptoms of weakness and fatigue, an inability to participate in activities and perform roles and responsibilities; psychosocial symptoms of uncertainty, worthlessness, hopelessness, fear; and the dialysis treatments themselves, as well as the dietary restrictions.
Interview
A17 Lee et al. (2018) To explain the experiences of patients with renal disease who have just begun hemodialysis in the end-stage Phenomenology 8 Patients: M (3), F (5) 30–60 (mean: 56.8) Colaizzi’s method/ • I go into darkness
Individual in-depth interviews • Being disappearing in others
• Baby bird living with love
• Dawn in darkness
• A life longing for the absolute
A18 Lin et al. (2015) To examine how people with end-stage renal disease interpret and act upon hemodialysis in their lives Grounded theory 15 Patients: M (10), F (5) 30–78 Constant comparative analysis/ Major theme: adopting HD life
Individual in-depth interviews • Slipping into, restricted to a renal word, losing self-control, stuck in an endless process
A19 Lindsay et al. (2014) To examine the life experiences of living with chronic illness for the hemodialysis patient Phenomenology 7 Patients: M (5), F (2) 45–81 Interpretative phenomenological analysis/ • The challenges of living with chronic renal failure
Semi-structured interviews • Body changes and embodiments
• Illness experience and social relationships
A20 Monaro et al. (2014) To describe the essence of the lived experience of patients and families in the early phase of long-term hemodialysis therapy Phenomenology 11 Patients: M (5), F (6); 5 family carers 30–84 (mean: 40.5) Phenomenological analysis/ • Lost life: shock and grief, loss of sense of self, loss of spontaneity and personal freedom, changed body feelings, reframing family roles, loss of social connectedness
Semi-structured interviews
A21 Al Nazly et al. (2013) To examine the lived experiences of Jordanian patients with chronic kidney disease who received hemodialysis Descriptive phenomenological research 9 Patients: M (4), F (5) 20–69 (mean: 47) Colaizzi’s method/ • Lifestyle change, time wasted, symptom-related suffering, marital and family role disruption, religious commitment disruption, motivators to alleviate stressors, experience of healthcare providers’ support
Semi-structured interviews
A22 Niu et al. (2017) To gain insight into the psychological trajectory and life experiences of hemodialysis patients to provide complementary guidance for nurses Descriptive phenomenological research 23 Patients: M (15), F (8) 29–67 Content analysis/ • Afraid stage: shock and denying the disease, fear of dialysis, worry about the future, 6-month duration of the afraid stage
In-depth interviews • Adapted stage: compliance, self-pity
• Depression stage: losing interest in life, facing death
A23 Park et al. (2015) To explore and understand the adaptation experiences of hemodialysis among women with end-stage renal disease Grounded theory 15 Patients: F (15) 20–70 Grounded theory method/ • Four adaptation stages: negative, despair, receptive, and maintenance
Individual in-depth interviews • The causal condition: vague expectations of recovery, refusal to undergo hemodialysis
• The core phenomenon: confinement to the dialysis machine
• The contextual condition: loss of femininity
• The action/interaction strategies: transition with a focus on hemodialysis, pursuit of information on dialysis, learning how to take care of one’s body
• Intervening conditions: support system, controlling one’s mind
• The consequence: having a strong will to live, sustaining one’s life
A24 Park et al. (2018) To evaluate the meaning and nature of the experience of dialysis of eight long-term hemodialysis patients with chronic renal failure Phenomenology 8 Patients: M (7), F (1) Mean: 53 Colaizzi’s method/ • Beginning of entirely different life: difficult life in receiving hemodialysis, tied to the yoke of dialysis therapy, saying hello to the previous life that ended
In-depth interviews • The life of getting back up again: accepting dialysis, support system, going back to social life
• Life of being present: sharing the experience of dialysis, unavoidable physical limitations, will to live
A25 Petersson et al. (2017) To explore adults’ experiences of living with a PD Qualitative study 10 Patients: M (6), F (4) 36–90 (mean: 82.5) Phenomenological hermeneutical method/ • Facing new demands: needing dialysis in order to survive, experiencing comorbidities, experiencing limitations
In-depth interviews • Managing daily life: uncertainty about the future, gaining necessary knowledge, autonomy, strategies reducing limitations, recapturing security
• Partnership in care: trust, continuity, person-centeredness
• Experiencing a meaningful life: hopefulness, focusing on life, thankfulness, quality of life
A26 Raj et al. (2020) To explore patient perspectives regarding their experience and outcomes with dialysis Phenomenology 17 Patients: M (11), F (6) 70–83 (mean: 76.2) Thematic analysis/ • Four domains: the self, the body, effects on daily life and the influences of others
Semi-structured interviews • Four themes: responses to loss (of time, autonomy, previous life), responses to uncertainty (variable symptoms; unpredictable future; dependence on others), acceptance/adaptation (to life on dialysis; to ageing), the role of relationships/support (family, friends, and clinicians)
A27 Rix et al. (2014) To describe the experiences of aboriginal people receiving hemodialysis in rural Australia, to inform strategies for improving renal services Qualitative study 18 Patients: M (9), F (9) 30–79 Strauss’ grounded theory method/ • The biggest shock of my life
In-depth interviews • Beats the alternative but it messes up your life
• Family is everything
• If I had one of the nurses to help me at home
• Don’t use them big jaw breakers
• Stop them from following us onto the machine
A28 Sadala et al. (2012) To highlight the meaning of PD as experienced by patients with chronic renal failure Qualitative study 19 Patients: M (8), F (11) 20–77 (mean: 46) Phenomenological hermeneutic method/ • Facing the world of renal failure and dialysis treatment
Narrative interviews • Living changes in one’s own body
• Sources of support
A29 Sahaf et al. (2017) To report uncertainty as part of the elderly experiences of living with hemodialysis Interpretive phenomenology 9 Patients: M (6), F (3) 64–88 Interpretative phenomenological analysis/ Main theme: uncertainty
In-depth unstructured interviews • Obscure future
• Fear of unknown
• Regularity induced irregularity
A30 Yang (2017) To provide guidelines for developing effective nursing interventions by exploring the nursing needs of these patients Phenomenology 11 Patients: M (6), F (5) 30–70 (mean: 51.1) Giorgi’s method/ • Emotional engagement: shock, despair, fear, depression, anger, negative assumptions
In-depth interviews • Struggle for survival: changes in their bodies, changes in their time and space, changes in their relationship
• Facing up to the reality: changing their perspectives, increased sense of reality
• Maintaining a hemodialysis-life balance: enduring by regaining a sense of control, suffering from the difficulties of their reality

F, female; HD, hemodialysis; M, male; NM, not mentioned; PD, peritoneal dialysis.

Table 3.
Themes and sub-themes of the study
Themes/sub-themes Studies
The inevitable experience of the troubles of dialysis
 • Facing lifelong hindrances out of nowhere A3, A4, A5, A6, A8, A9, A11, A12, A13, A15, A19, A20, A21, A22, A23, A24, A26, A28, A29, A30
 • Spend endless time and energy on dialysis A2, A3, A4, A5, A9, A10, A11, A12, A14, A15, A16, A19, A21
 • Living in a shrinking world of isolation A1, A2, A4, A6, A7, A8, A9, A10, A15, A16, A20, A21, A22, A24, A26, A27, A29
Life is extended, but deteriorating in every aspect
 • The time and energy left are limited A2, A3, A4, A7, A9, A12, A13, A17, A21, A27
 • Back and forth of frustration with dialysis A1, A2, A3, A4, A6, A7, A8, A9, A17, A19, A21, A22, A23, A24, A27, A30
Accepting dialysis with a positive outlook for life
 • Taking dialysis as a part of life through adapting and balancing A3, A7, A9, A11, A12, A13, A14, A15, A16, A17, A18, A19, A20, A22, A23, A24, A25, A26, A28, A30
 • Being thankful for living day by day right now A2, A6, A7, A11, A13, A15, A22, A24, A25, A27, A30
Essential support experienced in an exhausting life
 • Having practical assistance for sustaining health by family and nurses A4, A6, A7, A8, A17, A19, A21, A23, A24, A28, A30
 • Living with support, encouragement, and shared emotion by others. A1, A2, A3, A4, A5, A6, A7, A8, A9, A12, A15, A16, A17, A18, A21, A26, A27, A28, A30

Overriding theme: “I do not have much time left.”–navigating the dual realities of one’s limited existence.

Appendix 1.
Search strategy
Databases Search terms
PubMed ("Renal Dialysis"[MeSH Terms] OR "Dialysis"[MeSH Terms] OR "renal dialys*"[Title/Abstract] OR "hemodialys*"[Title/Abstract] OR "peritoneal dialys*"[Title/Abstract]) AND ("Qualitative Research"[MeSH Terms] OR "qualitative stud*"[Title/Abstract] OR "qualitative research*"[Title/Abstract])
CINAHL ((TI(dialys* OR hemodialys* OR peritoneal dialys*) OR MH "Dialysis"
OR AB(dialys* OR hemodialys* OR peritoneal dialys*)) AND (TI(qualitative stud* OR qualitative research*) OR AB(qualitative stud* OR qualitative research*) OR MH "Qualitative Studies"))
EMBASE ('dialys*':ti,ab OR 'hemodialys*':ti,ab OR 'peritoneal dialys*':ti,ab) AND
('qualitative stud*':ti,ab OR 'qualitative research*':ti,ab)
PsycINFO (TI(dialys* OR hemodialys* OR peritoneal dialys*) OR AB(dialys* OR
hemodialys* OR peritoneal dialys*)) AND (TI(qualitative stud* OR qualitative research*) OR AB(qualitative stud* OR qualitative research*))
KISS All:Dialysis OR hemodialysis OR peritoneal dialysis AND qualitative study
RISS Title:Dialysis OR hemodialysis OR peritoneal dialysis <AND> qualitative study
DBpia All:Dialysis OR hemodialysis OR peritoneal dialysis AND qualitative study

CINAHL, Cumulative Index to Nursing and Allied Health Literature; DBpia, Database Periodical Information Academic; EMBASE, Excerpta Medica Database; KISS, Korean Studies Information Service System; RISS, Research Information Sharing Service.

Articles reviewed in meta-synthesis
A1. Achempim-Ansong G, Donkor ES. Psychosocial and physical experiences of haemodialysis patients in Ghana. Afr J Nurs Midwifery. 2012;14(1):38-48. https://doi.org/10.25159/2520-5293/9182
A2. Axelsson L, Randers I, Jacobson SH, Klang B. Living with haemodialysis when nearing end of life. Scand J Caring Sci. 2012;26(1):45-52. https://doi.org/10.1111/j.1471-6712.2011.00902.x
A3. Beng TS, Yun LA, Yi LX, Yan LH, Peng NK, Kun LS, et al. The experiences of suffering of end-stage renal failure patients in Malaysia: a thematic analysis. Ann Palliat Med. 2019;8(4):401-410. https://doi.org/10.21037/apm.2019.03.04
A4. Calvey D, Mee L. The lived experience of the person dependent on haemodialysis. J Ren Care. 2011;37(4):201-207. https://doi.org/10.1111/j.1755-6686.2011.00235.x
A5. Chiaranai C. The lived experience of patients receiving hemodialysis treatment for end-stage renal disease: a qualitative study. J Nurs Res. 2016;24(2):101-108. https://doi.org/10.1097/jnr.0000000000000100
A6. Cho MK, Shin G. Gender-based experiences on the survival of chronic renal failure patients under hemodialysis for more than 20 years. Appl Nurs Res. 2016;32:262-268. https://doi.org/10.1016/j.apnr.2016.08.008
A7. Clarkson KA, Robinson K. Life on dialysis: a lived experience. Nephrol Nurs J. 2010;37(1):29-35.
A8. da Silva Junior RF, Freitas LO, Viera BQ, Santos SP, Barbosa HA, Teles MA. “We live on the edge": meanings of hemodialysis for the chronic kidney disease patient. J Nurs UFPE Online [Internet]. 2015 [cited 2024 Dec 15];9(4):7338-7346. Available from: https://www.semanticscholar.org/paper/%22We-live-on-the-edge%22%3A-meanings-of-hemodialysis-for-Junior-Freitas/bc00e7d122107f4fdcd7e74596170b75f4cab433
A9. Hagren B, Pettersen IM, Severinsson E, Lützén K, Clyne N. Maintenance haemodialysis: patients' experiences of their life situation. J Clin Nurs. 2005;14(3):294-300. https://doi.org/10.1111/j.1365-2702.2004.01036.x
A10. Herlin C, Wann-Hansson C. The experience of being 30-45 years of age and depending on haemodialysis treatment: a phenomenological study. Scand J Caring Sci. 2010;24(4):693-699. https://doi.org/10.1111/j.1471-6712.2009.00764.x
A11. Jonasson K, Gustafsson LK. You live as much as you have time to: the experience of patients living with hemodialysis. Nephrol Nurs J. 2017;44(1):35-41.
A12. Jones DJ, Harvey K, Harris JP, Butler LT, Vaux EC. Understanding the impact of haemodialysis on UK National Health Service patients’ well-being: a qualitative investigation. J Clin Nurs. 2018;27(1-2):193-204. https://doi.org/10.1111/jocn.13871
A13. Karamanidou C, Weinman J, Horne R. A qualitative study of treatment burden among haemodialysis recipients. J Health Psychol. 2014;19(4):556-569. https://doi.org/10.1177/1359105313475898A
A14. Kazemi M, Nasrabadi AN, Hasanpour M, Hassankhani H, Mills J. Experience of Iranian persons receiving hemodialysis: a descriptive, exploratory study. Nurs Health Sci. 2011;13(1):88-93. https://doi.org/10.1111/j.1442-2018.2011.00586.x
A15. Kim YJ, Kwon SH. The experience of life reconstruction in hemodialysis patients with chronic renal failure. J Digit Converg. 2017;15(9):321-333. https://doi.org/10.14400/JDC.2017.15.9.321
A16. Krueger L. Experiences of Hmong patients on hemodialysis and the nurses working with them. Nephrol Nurs J. 2009;36(4):379-387.
A17. Lee EJ, Jo HS, Kim SS. Phenomenology on the hemodialysis experience of patients with end-stage renal disease. Korean J Rehabil Nurs. 2018;21(1):22-32. https://doi.org/10.7587/kjrehn.2018.22
A18. Lin CC, Han CY, Pan IJ. A qualitative approach of psychosocial adaptation process in patients undergoing long-term hemodialysis. Asian Nurs Res (Korean Soc Nurs Sci). 2015;9(1):35-41. https://doi.org/10.1016/j.anr.2014.10.007
A19. Lindsay H, MacGregor C, Fry M. The experience of living with chronic illness for the haemodialysis patient: an interpretative phenomenological analysis. Health Sociol Rev. 2014;23(3):232-241. https://doi.org/10.1080/14461242.2014.11081976
A20. Monaro S, Stewart G, Gullick J. A ‘lost life’: coming to terms with haemodialysis. J Clin Nurs. 2014;23(21-22):3262-3273. https://doi.org/10.1111/jocn.12577
A21. Al Nazly E, Ahmad M, Musil C, Nabolsi M. Hemodialysis stressors and coping strategies among Jordanian patients on hemodialysis: a qualitative study. Nephrol Nurs J. 2013;40(4):321-327.
A22. Niu HY, Liu JF. The psychological trajectory from diagnosis to approaching end of life in patients undergoing hemodialysis in China: a qualitative study. Int J Nurs Sci. 2016;4(1):29-33. https://doi.org/10.1016/j.ijnss.2016.10.006
A23. Park EJ, Kim YH, Son HM. Adaptation experience among hemodialysis of women with end-stage renal disease. Korean J Adult Nurs. 2015;27(5):493-504. https://doi.org/10.7475/kjan.2015.27.5.493
A24. Park GY, Yoo EK. Experience of dialysis in long-term hemodialysis patients. J Korea Acad Ind Coop Soc. 2018;19(4):265-275. https://doi.org/10.5762/KAIS.2018.19.4.265
A25. Petersson I, Lennerling A. Experiences of living with assisted peritoneal dialysis: a qualitative study. Perit Dial Int. 2017;37(6):605-612. https://doi.org/10.3747/pdi.2017.00045
A26. Raj R, Brown B, Ahuja K, Frandsen M, Jose M. Enabling good outcomes in older adults on dialysis: a qualitative study. BMC Nephrol. 2020;21(1):28. https://doi.org/10.1186/s12882-020-1695-1
A27. Rix EF, Barclay L, Stirling J, Tong A, Wilson S. ‘Beats the alternative but it messes up your life’: aboriginal people’s experience of haemodialysis in rural Australia. BMJ Open. 2014;4(9):e005945. https://doi.org/10.1136/bmjopen-2014-005945
A28. Sadala ML, Bruzos GA, Pereira ER, Bucuvic EM. Patients’ experiences of peritoneal dialysis at home: a phenomenological approach. Rev Lat Am Enfermagem. 2012;20(1):68-75. https://doi.org/10.1590/s0104-11692012000100010
A29. Sahaf R, Sadat Ilali E, Peyrovi H, Akbari Kamrani AA, Spahbodi F. Uncertainty, the overbearing lived experience of the elderly people undergoing hemodialysis: a qualitative study. Int J Community Based Nurs Midwifery. 2017;5(1):13-21.
A30. Yang J. An alternative view of living well: survival trajectory of Korean patients with kidney failure on hemodialysis. Nephrol Nurs J. 2017;44(3):219-249.

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        A qualitative meta-synthesis of the essence of patient experiences of dialysis
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      No. Author (year) Purpose Research design Participants Age (yr) Data analysis/data collection Results
      A1 Achempim-Ansong et al. (2012) To explore the psychosocial and physical experiences of hemodialysis patients Explorative descriptive qualitative research 10 Patients 20–65 Content analysis/ • Psychological experiences (anxiety, depression, anger, worrying, fear of death)
      Semi-structured interviews • Social experiences (intentional isolation, inability to attend social functions, effect of dialysis on marriage)
      • Economic encounters (difficulty in financing the treatment, loss of income, lowered productivity)
      • Physical experiences (problems with sleeping, with fluid and diet restrictions, with accessing the treatment site)
      A2 Axelsson et al. (2012) To describe and to elucidate the meanings of being severely ill and living with hemodialysis when nearing end of life Phenomenology 8 Patients: M (5), F (3) 66–87 (mean: 78) Structural analysis/ • Being subordinate to the deteriorating body
      Serial qualitative interviews • Changing outlook on life
      • Striving for upheld dignity
      A3 Beng et al. (2019) To explore the experiences of suffering in end-stage renal failure patients who are on maintenance dialysis Qualitative study 19 Patients: M (15), F (4) 30–60 Thematic analysis/ • Physical suffering: physical symptoms, functional limitations
      Semi-structured interviews • Psychological suffering: the emotions of suffering, thoughts of suffering
      • Social suffering: healthcare-related suffering, burdening of others
      • Spiritual suffering: the queries of suffering
      A4 Calvey et al. (2011) To step into the lives of seven patients once they were outside the dialysis unit Phenomenology 7 Patients 29–60 Colaizzi’s method/ Major theme: sense of self
      In-depth semi-structured interviews • The future self: an uncertain future, lost dreams, future hopes
      • The living self: bodily self, mental self, functional self, social self
      • The mortal/fragile self
      • The growing/learning self
      A5 Chiaranai (2016) To better understand the daily life experiences of Thai patients with end-stage renal disease who are on HD Descriptive phenomenology 26 Patients: M (8), F (18) 48–77 Thematic analysis/ • Facing life’s limitations: a decrease in physical activity, a narrowed social life, dealing with emotional change such as anger, guilt, depression, unhappiness, spend hidden cost related to HD treatment
      Semi-structured interviews • Living with uncertainty: fear of death, do not know future, being scared, feeling insecure that HD treatment will not last for long
      • Dependence on medical technology: HD treatment is too important to ignore, feeling save while undergoing HD treatment, HD unit is the familiar place, strictly adhere to HD treatment, cannot live without HD machine
      A6 Cho et al. (2016) To understand and develop helpful realistic nursing interventions, we interviewed hemodialysis patients of different genders, who have survived more than 20 years, regarding what their survival experiences meant for them. Phenomenology 5 Patients: M (3), F (2) 37–67 (mean: 53) Colaizzi’s method/ • Lifelong nasty disease beginning with ‘surely not’
      In-depth interviews • Searching for myself on boundary of life and death
      • Fixed ideas regarding gender differences corrected by the power of the family
      • Living from survival to hope
      A7 Clarkson et al (2010) To explore the lived experience of patients with end-stage renal disease Qualitative study 10 Patients: M (5), F (5) 26–85 Thematic analysis/ • Lifestyle changes: restricted life, limitations, body/mind/sprit challenges
      Interview • Coping: support, family, friends, support group, God, prayer, church
      • Areas lacking: health management, education, preparing the next generation
      A8 da Silva Junior et al. (2015) To recognize the meaning of hemodialysis for patients with chronic renal failure Descriptive qualitative research 12 Patients: M (5), F (7) 24–68 Symbolic interactionism/ Semi-structured interviews Central category: dialysis for chronic renal disease carrier
      • Meaning of hemodialysis
      • Experience with the treatment hemodialysis
      • The social interactions of patients in
      A9 Hagren et al. (2004) To examine how patients suffering from chronic kidney disease on maintenance hemodialysis experience their life situation Qualitative study 41 Patients: M (26), F (15) 29–86 (mean: 67.5) Content analysis/ • Not finding space for living: struggling with time-consuming care, feeling that life is restricted
      Semi-structured interviews • Feeling evoked in the care-situation: sense of emotional distance, feeling vulnerable
      • Attempting to maintain manageability of restricted life
      A10 Herlin et al. (2010) To describe how HD patients, between 30 and 45 years of age, experience their dependence on HD treatment Phenomenology 9 Patients: M (5), F (4) 30–44 (mean: 37) Giorgi’s method/ Major theme: the total lack of freedom
      Semi-structured interviews • A sense of fear, dependency on caregivers, time lost in dialysis, feelings of loneliness, being on a waiting list for a kidney transplantation
      A11 Jonasson et al. (2017) To describe changes in life for patients with renal failure undergoing hemodialysis Qualitative descriptive study 9 Patients: M (5), F (4) 41–90 Content analysis/ • From liberty to captivity: limitations, dependency
      Semi-structured interviews • Adjusting to the new life: to exist during hemodialysis, hope
      • The new life moving towards reconciliation: gratitude, acceptance
      A12 Jones et al. (2017) To obtain UK National Health Service patients’ perspectives on the challenges arising from hemodialysis with the intention of identifying potential improvements Qualitative study 20 Patients: M (8), F (12) 55–88 (mean: 74) Thematic analysis/ • Fluctuations in cognitive/physical well-being across the HD cycle
      Semi-structured interviews • Restrictions arising from the HD treatment schedule
      • Emotional impact of HD on the self and others
      A13 Karamanidou et al. (2014) To explore the experience of renal patients undergoing dialysis treatment focusing on beliefs about their illness, prescribed treatment, and the challenge of adherence Phenomenology 7 Patients: M (3), F (4) 32–68 Interpretative phenomenological analysis/ • Patients have a range of beliefs
      Semi-structured interviews about their illness and their treatment consistent with the self-regulatory model of illness, that is, identity, cause, consequences, timeline, and cure.
      A14 Kazemi et al. (2011) To explore the experiences of social interactions in the daily life of Iranian persons who were receiving hemodialysis Descriptive, exploratory study 21 Patients: M (12), F (9) 24–74 (mean: 45.2) Thematic analysis/ • Living with fatigue, changes in self-image, patients’ dependency on the device, place and time of hemodialysis, hiding the disease
      Semi-structured interviews
      A15 Kim et al. (2017) To understand the experience of reconstructing life through hemodialysis in chronic renal failure patients and to clarify the meaning of their vivid experience Phenomenology 8 Patients: M (4), F (4) 30–60 Colaizzi’s method/ • The beginning of unexpected difficulties
      Individual in-depth interviews • Burden of survival brought on by hemodialysis
      • The driving force of recovery
      • Choices and concentration of today in order
      • Everyday life which must be woven sincerely
      A16 Krueger (2009) To explore Hmong experiences with hemodialysis as well as the experiences of nurses working with these Hmong patients Qualitative study 4 Patients: M (4) and 17 nurses: F (17) NM Correlation analysis/ • Overwhelming sadness was the most consistent theme. Sadness resulted physical symptoms of weakness and fatigue, an inability to participate in activities and perform roles and responsibilities; psychosocial symptoms of uncertainty, worthlessness, hopelessness, fear; and the dialysis treatments themselves, as well as the dietary restrictions.
      Interview
      A17 Lee et al. (2018) To explain the experiences of patients with renal disease who have just begun hemodialysis in the end-stage Phenomenology 8 Patients: M (3), F (5) 30–60 (mean: 56.8) Colaizzi’s method/ • I go into darkness
      Individual in-depth interviews • Being disappearing in others
      • Baby bird living with love
      • Dawn in darkness
      • A life longing for the absolute
      A18 Lin et al. (2015) To examine how people with end-stage renal disease interpret and act upon hemodialysis in their lives Grounded theory 15 Patients: M (10), F (5) 30–78 Constant comparative analysis/ Major theme: adopting HD life
      Individual in-depth interviews • Slipping into, restricted to a renal word, losing self-control, stuck in an endless process
      A19 Lindsay et al. (2014) To examine the life experiences of living with chronic illness for the hemodialysis patient Phenomenology 7 Patients: M (5), F (2) 45–81 Interpretative phenomenological analysis/ • The challenges of living with chronic renal failure
      Semi-structured interviews • Body changes and embodiments
      • Illness experience and social relationships
      A20 Monaro et al. (2014) To describe the essence of the lived experience of patients and families in the early phase of long-term hemodialysis therapy Phenomenology 11 Patients: M (5), F (6); 5 family carers 30–84 (mean: 40.5) Phenomenological analysis/ • Lost life: shock and grief, loss of sense of self, loss of spontaneity and personal freedom, changed body feelings, reframing family roles, loss of social connectedness
      Semi-structured interviews
      A21 Al Nazly et al. (2013) To examine the lived experiences of Jordanian patients with chronic kidney disease who received hemodialysis Descriptive phenomenological research 9 Patients: M (4), F (5) 20–69 (mean: 47) Colaizzi’s method/ • Lifestyle change, time wasted, symptom-related suffering, marital and family role disruption, religious commitment disruption, motivators to alleviate stressors, experience of healthcare providers’ support
      Semi-structured interviews
      A22 Niu et al. (2017) To gain insight into the psychological trajectory and life experiences of hemodialysis patients to provide complementary guidance for nurses Descriptive phenomenological research 23 Patients: M (15), F (8) 29–67 Content analysis/ • Afraid stage: shock and denying the disease, fear of dialysis, worry about the future, 6-month duration of the afraid stage
      In-depth interviews • Adapted stage: compliance, self-pity
      • Depression stage: losing interest in life, facing death
      A23 Park et al. (2015) To explore and understand the adaptation experiences of hemodialysis among women with end-stage renal disease Grounded theory 15 Patients: F (15) 20–70 Grounded theory method/ • Four adaptation stages: negative, despair, receptive, and maintenance
      Individual in-depth interviews • The causal condition: vague expectations of recovery, refusal to undergo hemodialysis
      • The core phenomenon: confinement to the dialysis machine
      • The contextual condition: loss of femininity
      • The action/interaction strategies: transition with a focus on hemodialysis, pursuit of information on dialysis, learning how to take care of one’s body
      • Intervening conditions: support system, controlling one’s mind
      • The consequence: having a strong will to live, sustaining one’s life
      A24 Park et al. (2018) To evaluate the meaning and nature of the experience of dialysis of eight long-term hemodialysis patients with chronic renal failure Phenomenology 8 Patients: M (7), F (1) Mean: 53 Colaizzi’s method/ • Beginning of entirely different life: difficult life in receiving hemodialysis, tied to the yoke of dialysis therapy, saying hello to the previous life that ended
      In-depth interviews • The life of getting back up again: accepting dialysis, support system, going back to social life
      • Life of being present: sharing the experience of dialysis, unavoidable physical limitations, will to live
      A25 Petersson et al. (2017) To explore adults’ experiences of living with a PD Qualitative study 10 Patients: M (6), F (4) 36–90 (mean: 82.5) Phenomenological hermeneutical method/ • Facing new demands: needing dialysis in order to survive, experiencing comorbidities, experiencing limitations
      In-depth interviews • Managing daily life: uncertainty about the future, gaining necessary knowledge, autonomy, strategies reducing limitations, recapturing security
      • Partnership in care: trust, continuity, person-centeredness
      • Experiencing a meaningful life: hopefulness, focusing on life, thankfulness, quality of life
      A26 Raj et al. (2020) To explore patient perspectives regarding their experience and outcomes with dialysis Phenomenology 17 Patients: M (11), F (6) 70–83 (mean: 76.2) Thematic analysis/ • Four domains: the self, the body, effects on daily life and the influences of others
      Semi-structured interviews • Four themes: responses to loss (of time, autonomy, previous life), responses to uncertainty (variable symptoms; unpredictable future; dependence on others), acceptance/adaptation (to life on dialysis; to ageing), the role of relationships/support (family, friends, and clinicians)
      A27 Rix et al. (2014) To describe the experiences of aboriginal people receiving hemodialysis in rural Australia, to inform strategies for improving renal services Qualitative study 18 Patients: M (9), F (9) 30–79 Strauss’ grounded theory method/ • The biggest shock of my life
      In-depth interviews • Beats the alternative but it messes up your life
      • Family is everything
      • If I had one of the nurses to help me at home
      • Don’t use them big jaw breakers
      • Stop them from following us onto the machine
      A28 Sadala et al. (2012) To highlight the meaning of PD as experienced by patients with chronic renal failure Qualitative study 19 Patients: M (8), F (11) 20–77 (mean: 46) Phenomenological hermeneutic method/ • Facing the world of renal failure and dialysis treatment
      Narrative interviews • Living changes in one’s own body
      • Sources of support
      A29 Sahaf et al. (2017) To report uncertainty as part of the elderly experiences of living with hemodialysis Interpretive phenomenology 9 Patients: M (6), F (3) 64–88 Interpretative phenomenological analysis/ Main theme: uncertainty
      In-depth unstructured interviews • Obscure future
      • Fear of unknown
      • Regularity induced irregularity
      A30 Yang (2017) To provide guidelines for developing effective nursing interventions by exploring the nursing needs of these patients Phenomenology 11 Patients: M (6), F (5) 30–70 (mean: 51.1) Giorgi’s method/ • Emotional engagement: shock, despair, fear, depression, anger, negative assumptions
      In-depth interviews • Struggle for survival: changes in their bodies, changes in their time and space, changes in their relationship
      • Facing up to the reality: changing their perspectives, increased sense of reality
      • Maintaining a hemodialysis-life balance: enduring by regaining a sense of control, suffering from the difficulties of their reality
      Themes/sub-themes Studies
      The inevitable experience of the troubles of dialysis
       • Facing lifelong hindrances out of nowhere A3, A4, A5, A6, A8, A9, A11, A12, A13, A15, A19, A20, A21, A22, A23, A24, A26, A28, A29, A30
       • Spend endless time and energy on dialysis A2, A3, A4, A5, A9, A10, A11, A12, A14, A15, A16, A19, A21
       • Living in a shrinking world of isolation A1, A2, A4, A6, A7, A8, A9, A10, A15, A16, A20, A21, A22, A24, A26, A27, A29
      Life is extended, but deteriorating in every aspect
       • The time and energy left are limited A2, A3, A4, A7, A9, A12, A13, A17, A21, A27
       • Back and forth of frustration with dialysis A1, A2, A3, A4, A6, A7, A8, A9, A17, A19, A21, A22, A23, A24, A27, A30
      Accepting dialysis with a positive outlook for life
       • Taking dialysis as a part of life through adapting and balancing A3, A7, A9, A11, A12, A13, A14, A15, A16, A17, A18, A19, A20, A22, A23, A24, A25, A26, A28, A30
       • Being thankful for living day by day right now A2, A6, A7, A11, A13, A15, A22, A24, A25, A27, A30
      Essential support experienced in an exhausting life
       • Having practical assistance for sustaining health by family and nurses A4, A6, A7, A8, A17, A19, A21, A23, A24, A28, A30
       • Living with support, encouragement, and shared emotion by others. A1, A2, A3, A4, A5, A6, A7, A8, A9, A12, A15, A16, A17, A18, A21, A26, A27, A28, A30
      Databases Search terms
      PubMed ("Renal Dialysis"[MeSH Terms] OR "Dialysis"[MeSH Terms] OR "renal dialys*"[Title/Abstract] OR "hemodialys*"[Title/Abstract] OR "peritoneal dialys*"[Title/Abstract]) AND ("Qualitative Research"[MeSH Terms] OR "qualitative stud*"[Title/Abstract] OR "qualitative research*"[Title/Abstract])
      CINAHL ((TI(dialys* OR hemodialys* OR peritoneal dialys*) OR MH "Dialysis"
      OR AB(dialys* OR hemodialys* OR peritoneal dialys*)) AND (TI(qualitative stud* OR qualitative research*) OR AB(qualitative stud* OR qualitative research*) OR MH "Qualitative Studies"))
      EMBASE ('dialys*':ti,ab OR 'hemodialys*':ti,ab OR 'peritoneal dialys*':ti,ab) AND
      ('qualitative stud*':ti,ab OR 'qualitative research*':ti,ab)
      PsycINFO (TI(dialys* OR hemodialys* OR peritoneal dialys*) OR AB(dialys* OR
      hemodialys* OR peritoneal dialys*)) AND (TI(qualitative stud* OR qualitative research*) OR AB(qualitative stud* OR qualitative research*))
      KISS All:Dialysis OR hemodialysis OR peritoneal dialysis AND qualitative study
      RISS Title:Dialysis OR hemodialysis OR peritoneal dialysis <AND> qualitative study
      DBpia All:Dialysis OR hemodialysis OR peritoneal dialysis AND qualitative study
      Table 1. Critical appraisal skills program evaluation of the studies (N=30)

      Q1. Was there a clear statement of the aims of the research? Q2. Is a qualitative methodology appropriate? Q3. Was the research design appropriate to address the aims of the research? Q4. Was the recruitment strategy appropriate to the aims of the research? Q5. Was the data collected in a way that addressed the research issue? Q6. Has the relationship between researcher and participants been adequately considered? Q7. Have ethical issues been taken into consideration? Q8. Was the data analysis sufficiently rigorous? Q9. Is there a clear statement of findings? Q10. How valuable is the research?

      C, can’t tell; N, no; Y, yes.

      Table 2. Summary of studies in the systematic review

      F, female; HD, hemodialysis; M, male; NM, not mentioned; PD, peritoneal dialysis.

      Table 3. Themes and sub-themes of the study

      Overriding theme: “I do not have much time left.”–navigating the dual realities of one’s limited existence.

      CINAHL, Cumulative Index to Nursing and Allied Health Literature; DBpia, Database Periodical Information Academic; EMBASE, Excerpta Medica Database; KISS, Korean Studies Information Service System; RISS, Research Information Sharing Service.

      Table 1.

      Table 2.

      Table 3.

      J Korean Acad Nurs : Journal of Korean Academy of Nursing
      © Korean Society of Nursing Science.
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