Study design and setting

This convergent parallel mixed-method study was conducted at the National Kidney Center, a major referral center providing dialysis services in Kathmandu, Nepal from Banasthali and Gaushala where quantitative and qualitative data were collected simultaneously and then analyzed in tandem. A convergent parallel design was chosen because it allowed us to gather both standardized quality of life measures and patients’ personal perspectives at the same time, so the two sets of findings could directly inform each other. This was also the most practical approach within our short study period, helping to reduce the burden on patients during dialysis sessions. By combining numbers with lived experiences, the design gave us a completer and more balanced picture of quality of life than sequential approaches would have. Data collection took place between June 21, 2024, and July 10, 2024. The site was selected due to its high patient turnover and diverse demographics, allowing for a varied sample that represents the hemodialysis patient population coming from Nepal.

Sample size and sampling procedure

The sample size for the quantitative survey was calculated using Cochran’s formula for estimating a proportion (n = z²pq/d²), adjusted for a finite population, using a prevalence of 42.9% based on the study done in two national kidney transplantation reference centers of Nepal [21]. The sampling frame for this study consists of all adult patients undergoing maintenance hemodialysis at the National Kidney Center in Kathmandu during the study period. Considering a five percent allowable error, 95% confidence interval & accounting for a 10% non-response error, the sample size was estimated to be 260. The study included adults on hemodialysis for over six months who gave informed consent, were fluent in the assessment language, and could understand and respond to the quality-of-life tool however those who suffering from mentally unstable illnesses that might impact their capacity to give answers were excluded which were verified through medical records alongside observable cognitive impairments. For the qualitative study, a total of 15 participants were purposively selected and approached for in-depth interview (IDI) based on their willingness to be interviewed. Selection also considered clinical stability during the data collection period, the ability to communicate in Nepali and able to share their experiences. Participants were chosen to capture variation in sex, education, socio-economic background, and duration on dialysis for at least six months so as to reflect diverse perspectives. We conducted IDI on quality of life among hemodialysis to provide detailed personal insights, explore complex issues and contextualize quantitative data for a comprehensive understanding. The number of IDIs were determined using the theory of data saturation where no new information emerged. Probes were used to align responses.

Data collection

Data collection was conducted at the National Kidney Center after receiving approval from the institution’s Research Committee. Face-to-face interviews were carried out during dialysis sessions for both quantitative and qualitative phases of the study. Interviews were collected concurrently to engage and optimize the recruitment process. Validated Nepali versions of the KDQOL – 36 [6,22] and an equity tool were used to evaluate QoL and socio-economic status of hemodialysis patients. For the quantitative information, a semi structured questionnaire (S1 file) consisting three sections were used. First section contained questionnaires on socio demographic characteristics namely sex, marital status, level of education, type of family, household wealth possessions. The second section included questionnaires on behavioral and morbid status namely use of tobacco, use of alcohol, type of diet preferred, time of diagnosis of CKD and felt burden of CKD treatment among respondents. Last section consisted of the Kidney Disease Quality of Life-36 (KDQOL-36) tool, which is a validated, disease-specific questionnaire designed to assess the quality of life in individuals with chronic kidney disease, especially those undergoing dialysis. It includes 36 items that combine general health measures from the SF-12 with kidney-specific domains such as symptom burden, effects of kidney disease, and its impact on daily life. Widely used in clinical and research settings, the KDQOL-36 is valued for its reliability, simplicity, and ability to capture the physical, emotional, and social challenges faced by kidney patients. Each domain of the KDQOL-36 is scored on a 0–100 scale, with higher scores reflecting better perceived quality of life [23]. In this study, we summarized scores using the observed minimum and maximum values, median, and interquartile range (Q3–Q1), given the non-parametric distribution of the data. The KDQOL-36 domains served as the dependent variables, while the variables from the first and second sections were considered independent variables assumed to influence the quality of life among respondents. The average time taken for the interview is about 35 minutes. For qualitative phase, an in-depth interview technique was used to gather detailed and comprehensive information from a small number of participants undergoing hemodialysis. The primary goal was to gain a deeper understanding of the quality of life among these patients by capturing their personal insights, lived experiences, and emotional responses related to kidney disease. The rationale for using in-depth interviews was to provide rich, personal narratives that could help explore complex issues and contextualize quantitative findings, thereby offering a more holistic view of the patients’ quality of life. This qualitative approach allowed for the exploration of subjective dimensions that are often missed in standard surveys or structured questionnaires. A total of fifteen participants were selected for the in-depth interviews. All were patients receiving treatment at the National Kidney Center. Before beginning, the purpose and rules of the interviews were explained to the participants to ensure informed consent and comfort. Each interview session lasted approximately 20 minutes. Semi-structured interviews were guided by five broad questions aligned with KDQOL-36 domains, covering physical health, symptom burden, effects of kidney disease on daily life, mental well-being, and social/family support (e.g., How has your physical health and daily functioning been affected?; What symptoms impact your quality of life the most?; How has kidney disease influenced your ability to perform daily activities, work, or household tasks?; How has kidney disease and dialysis affected your emotional well-being and stress levels?; How do family, friends, or your social environment help you cope, and how has your social life been affected?).We determined the number of interviews based on data saturation, the point when no new themes or insights were emerging, and responses began to repeat what earlier participants had already shared. Saturation was assessed by reviewing transcripts and codes after each set of interviews, and once patterns stabilized, we concluded that additional interviews would not add new information. The interviews were recorded, translated into English, and carefully reviewed to extract key findings. These narratives contributed significantly to understanding the multifaceted experiences of hemodialysis patients.

Data management and analysis

Quantitative data were entered in Epi Data version 3.1 exported to Statistical Package for Social Science (SPSS) version 22 for analysis (S1 Data). Descriptive statistics were used to summarize the respondents’ demographic profiles, behavioral and morbid status, and quality of life scores. Inferential statistics, specifically the Mann-Whitney U test and Kruskal-Wallis test at 5% level of significance, were applied where appropriate to examine associations between the independent variables and quality of life outcomes.

The audio recordings of in-depth interviews (IDIs) were transcribed in Nepali and then translated to English by first and last author. The transcripts were cross checked for accuracy and language translation consistency from Nepali to English. Prolonged and dedicated involvements of the authors were done throughout the process of transcribing and translating the recordings. The responses were deductively coded into the four domains of the KDQOL. The coding was reviewed again by the authors to understand the emotions and experiences of participants to become familiar with the context. We created data interpretation from respondent’s perspectives that included textual and structural explanations. Since the responses related to symptoms and effects were largely similar, we combined them and incorporated the effect-related responses into the symptom’s domain. Special attention was given to preserving the authenticity of participants’ verbatim responses while systematically aligning the content with the established domains of quality of life. Quotes assigned to each domain were coded using phenomenological approach [24]. The transcripts were returned to the participants for the validation of their responses.

Ethical consideration

Ethical clearance was obtained from the Institutional Review Committee of Star Hospital (Registration Number: 306/080/081), with additional approval from the National Kidney Center. All participants provided written informed consent, documented by signed consent forms stored securely by the research team. Each consent form was signed by the participant and, when applicable, witnessed by a family member who accompanied the participant during the consent process. Participation was voluntary, with the option to withdraw at any time without explanation. Privacy and confidentiality were strictly maintained, and all participants were treated equally regardless of gender, race, or caste. No one was forced to participate. For in-depth interviews, separate written consent was also obtained for audio recording, and all recordings were anonymized to protect participant identity.

Qualitative findings on physical health-related quality of life in hemodialysis patients

Patients undergoing hemodialysis frequently reported persistent fatigue, anorexia, and significant weight loss, all of which severely impacted their daily lives. Many struggled with exhaustion, making even simple tasks feel overwhelming. Routine activities such as lifting small objects or walking short distances required frequent rest breaks, and some patients had to rely on family members for assistance. Muscle weakness and reduced stamina further restricted their mobility, often leading to frustration and a sense of dependency.

A common experience among patients was drastic weight fluctuations, contributing to their overall physical decline. One participant shared, “I didn’t eat much, and I couldn’t sleep well at night due to chest congestion. My weight dropped from 76 kg to 39 kg. Eventually, I started eating a little and began to recover. Now, I weigh around 75 kg.” (IDI:9). Another echoed a similar experience, “Initially, I weighed 101 kilos, then dropped to 43 kilos. Now, I weigh 61 kilos.” (IDI:6). Beyond weight loss, patients reported a significant decrease in endurance and strength, affecting their ability to engage in daily activities. One noted, “I don’t have the same enthusiasm as before, and it is difficult to work. My endurance has decreased, and I find it harder to walk or move around for dialysis.” (IDI:12). Another explained, “My strength has gradually decreased. I used to be strong, but now I feel weaker and experience more pain and difficulty.” (IDI:13).

Many patients reported difficulties with mobility, stating that even simple movements had become challenging. Some explained that missing a single dialysis session made breathing difficult, while others experienced a significant decline in their ability to stand or walk for extended periods. One patient shared, “It’s very difficult. For example, I can’t walk now. If I miss a dialysis session, breathing becomes hard. When my blood level decreases, my energy drops, and I can’t perform the activities I used to. Now, I can only do simple tasks like sitting in a shop and handing out small items. The doctor advises not to lift more than two kilos. It’s very tough.” (IDI:7). Another added, “If I stand for a while, my legs get weak.” (IDI:10).

Patients also described a drastic decline in their endurance compared to before starting hemodialysis. One reflected, “There is a big difference between working for 24 hours and working for 4 hours; it impacts blood volume immensely. You can’t eat certain foods, you feel weak, and the entire lifestyle is affected.” (IDI:3). Another noted, “Now, my memory is also decreasing. Endurance is tied to a person’s nature, understanding, and practical behavior. It’s not like it used to be when I was normal. That’s not possible anymore.” (IDI:7).

Pain and discomfort were commonly reported, with many experiencing persistent muscle cramps, joint pain, and general weakness. These symptoms forced patients to modify their daily routines and incorporate frequent rest breaks. One participant described, “Once you get sick, your physical strength naturally decreases. My body has become weaker, and after starting dialysis, my bones have weakened, and my skin itches.” (IDI:1). Another added, “Before starting dialysis, I was able to do more, but now I can hardly stand. My arms and legs feel weak, my bones feel eroded, and many other problems have arisen. There isn’t anything that hasn’t been affected.” (IDI:2).

In addition to these physical challenges, patients reported a decline in social interaction and a reduction in their ability to engage in social or work-related activities. One participant shared, “It has changed a lot. Now, no one is around except my brother, sister, and close relatives. I don’t know where my friends are. Only my husband is there for me.” (IDI:4). Another described how their daily routine was altered: “It’s hard now. I can’t go out and work. If I try to work, I miss my dialysis. If I miss it, I could die. I can’t do household chores as I used to. Earlier, I could do everything, like washing clothes, buying groceries, cooking.” (IDI:6).

Despite these limitations, some patients adopted strategies to maintain independence. While many modified their daily routines to conserve energy, others engaged in light physical activities such as stretching or slow walking to manage stiffness and improve circulation. However, the persistent burden of fatigue, mobility challenges, and physical discomfort continued to hinder their ability to carry out basic daily tasks, with many relying on caregivers or external support.

Qualitative findings on mental health-related quality of life in hemodialysis patients

The unpredictability of hemodialysis treatment and frequent hospital visits contributed to persistent anxiety and depressive symptoms. Many patients expressed feelings of hopelessness, emotional distress, and anxiety about their condition, financial burden, and future uncertainties. The study findings indicate that patients with higher socio-economic status had significantly better mental health scores (p < 0.0001), suggesting that financial stability plays a crucial role in mental well-being. One participant described their persistent anxiety: “I feel worried and in pain. I get anxious about what I need to do.” (IDI:12). Another shared how dialysis initially led to a mental health decline: “It completely affects you; you feel like everything is over, like there’s nothing left. Gradually, as you continue dialysis, you develop hope that you can move forward with a transplant. Initially, it feels devastating with depression and anxiety, and your dreams are shattered.” (IDI:3). A similar sentiment was echoed by another participant: “I used to have a lot of anxiety, thinking the world was ending. It was very difficult, and I still experience it, but now I’ve come to terms with it.” (IDI:13).

The emotional toll of kidney disease was also evident in patients’ responses, with many expressing stress, anxiety, and frustration. One participant explained their initial worry: “I don’t know what I was worried about, but I was worried (laughs). I thought I would always have to do dialysis. At first, I didn’t know much, and it was very hard. I thought I would always have to live like this, and just when I was at the age to study, I became ill, which caused me a lot of worry.” (IDI:4). Another patient voiced concern over financial issues: “I worry about not having enough money for treatment. This illness makes me worry about what to eat and how to manage everything.” (IDI:9). A patient further reflected on the broader impact of illness, saying, “Life changes after getting sick. It’s not like being healthy. One has to go through different stress and problems.” (IDI:11).

Despite these challenges, some patients reported a shift toward emotional stability over time. One individual explained, “Initially, you have to accept it. Once you accept it, you understand how to move forward and how to reduce complications by focusing on diet and other aspects.” (IDI:3). Another added, “Initially, people experience depression and anxiety. After overcoming the initial phase, stability comes. It’s still ongoing like that, and now it’s somewhat stable.” (IDI:3). Some patients even described a sense of relief after dialysis: “Dialysis makes me feel lighter, and my mood doesn’t get as bad as it used to.” (IDI:9).

Despite the mental and emotional burden, many patients demonstrated resilience through adaptive coping strategies, including seeking social support, engaging in religious practices, and maintaining a positive outlook. Some participants reported a shift in mindset that helped them endure the treatment. One individual shared, “I used to worry about my child becoming an orphan, but I realized that I need to stay strong for their sake.” (IDI:2). Another expressed a similar sentiment: “I have to accept that I need to live. Whatever happens, I have to endure it and move forward with energy.” (IDI:7).

Family and social support played a crucial role in helping patients manage their emotional distress. Many participants emphasized how the presence of supportive family members alleviated their fears and stress. One participant reflected, “Mentally, I haven’t experienced much pressure, maybe because my family supports me well. Someone is always there to console me, so I don’t feel much mental stress. I was very scared about what dialysis would be like. My family didn’t give me much time to think about it, except at night when I couldn’t sleep and would cry, thinking about my child being left alone. But after my family decided on a transplant, I felt better. It didn’t work out, but I felt less tense.” (IDI:2). Another patient emphasized the importance of emotional support from loved ones: “The biggest support comes from family and friends. Their support and consolation are what keep us going. Having people who stand by you during difficult times helps a lot.” (IDI:3).

Several participants highlighted the constant presence of their loved ones during difficult moments: “For about 1 to 1.5 months, my husband never left me alone, even when I went to the bathroom or washed my face. I had a sister who did dialysis with me, and she tried to comfort me a lot. The doctors also advised me a lot, saying I shouldn’t take certain medications and should control myself. I received a lot of support from them. My sisters also advised me to control myself, and later I understood. Everyone supported me, and after thinking about it a lot, I felt like crying. But with the support of my family, I managed.” (IDI:4).

In addition to emotional and family support, some patients actively used distraction techniques to manage stress and maintain a sense of normalcy. Engaging in light household tasks, watching entertainment, and keeping occupied with hobbies were commonly reported coping mechanisms. One participant shared, “I try to distract myself by watching comedy on my phone and doing household chores. Sometimes I cook something I crave.” (IDI:10). Another explained, “I distract myself by using my phone, watching educational videos, and other things to keep myself occupied.” (IDI:11). Others focused on light physical activities to shift their attention away from their illness: “I try not to think too much about it and keep myself busy with light household tasks like dusting and organizing clothes to distract myself.” (IDI:12).

Despite the significant psychological and emotional challenges faced by hemodialysis patients, the presence of social support, adaptive coping mechanisms, and financial stability played a crucial role in maintaining psychological resilience. While many patients initially struggled with anxiety and depression, those who actively engaged in positive coping strategies, received strong family support, and maintained a hopeful outlook were better able to manage their emotional distress.

Qualitative findings on the symptoms domain in hemodialysis patients

Patients undergoing hemodialysis experience a range of physical symptoms, including persistent fatigue, pain, discomfort, sleep disturbances, and limitations in daily activities. These symptoms contribute significantly to their overall symptom burden, with some reporting severe impacts on their quality of life. The Symptoms/Problem List domain in this study ranged from 2.08 to 100, with a mean of 65.60 ± 21.21, indicating moderate to severe symptom burden with high variability among patients.

Many participants shared their struggles with chronic pain, muscle weakness, and severe fatigue, which hindered their ability to perform everyday tasks. One patient described the discomfort: “The skin itches, there’s dizziness, and if too much fluid is removed, it can cause low pressure and weakness. All of these happen.” (IDI:1). Another participant expressed similar discomfort, saying, “I feel nauseous, have body aches, itchy skin, dry skin, and loss of appetite.” (IDI:15).

In addition to physical discomfort, some patients also faced complications that exacerbated their symptoms. One patient explained: “I had severe itching due to high phosphorus levels. If not controlled, protein deficiency can cause swelling. Other symptoms include bone pain, itching, and mental distress. I have difficulty sleeping, lack of appetite, restlessness, and leg problems.” (IDI:8). Another patient shared, “Sometimes my blood pressure drops, and I feel dizzy. Occasionally, my hands and feet hurt.” (IDI:9).

Managing these symptoms is crucial for improving patients’ well-being. Many relied on medications or non-medical coping strategies to alleviate discomfort. One patient described using physical remedies: “By rubbing the itchy skin against the wall, stretching and pressing on cramps, and getting massages.” (IDI:7). Another patient said they managed their symptoms through medication: “I take medication for itching and calcium supplements. I also take protein supplements and manage frequent urinary infections.” (IDI:5).

Despite the persistent nature of these symptoms, patients developed coping mechanisms to manage their physical discomfort. Some patients adjusted their daily routines, incorporated rest periods, and sought support from family or fellow dialysis patients. One patient shared, “I used to feel lonely and sad, but now I have friends and support from other dialysis patients. I have built up my morale and realized that life goes on.” (IDI:5). Another emphasized resilience, stating, “I will live as long as my time allows. I’ve accepted it. As long as I live, I will keep going. I don’t let negative thoughts come to my mind.” (IDI:10).

Family support played a key role in helping many patients cope with the symptoms of hemodialysis. One participant described, “Mentally, I haven’t experienced much pressure, maybe because my family supports me well. Someone is always there to console me, so I don’t feel much mental stress. My family didn’t give me much time to think about it, except at night when I couldn’t sleep and would cry, thinking about my child being left alone. But after my family decided on a transplant, I felt better. It didn’t work out, but I felt less tense.” (IDI:2).

Moreover, financial stability also emerged as an important factor in managing symptoms. Participants with better socio-economic status reported significantly lower symptom severity scores, suggesting that financial security may alleviate some of the burden caused by the illness.

In conclusion, the symptoms experienced by patients undergoing hemodialysis are complex and multifaceted, impacting both their physical health and emotional well-being. However, adaptive coping mechanisms, family support, and symptom management strategies are crucial in helping patients cope with their daily challenges. Furthermore, socio-economic factors, including financial stability, play a vital role in reducing symptom severity and improving overall quality of life.

Qualitative findings on the Burden/effect domain in hemodialysis patients

Many patients reported feeling overwhelmed by the relentless demands of treatment, frequent medical visits, and financial constraints, all of which significantly impact their mental, physical, and social well-being.

The emotional and psychological burden was a dominant theme, with patients expressing feelings of helplessness, exhaustion, and stress due to the ongoing nature of their illness. The association between financial burden and higher disease burden scores (p < 0.0001) highlights how economic challenges exacerbate distress. Many patients viewed the future with uncertainty and hopelessness, as reflected in statements like “We have to continue dialysis to live. How can we feel about the future? We sick people have a miserable life. It will always be bad. We have to continue dialysis until we die” (IDI:4). Others expressed anxiety about dialysis-related complications: “I’ve seen people die from dialysis-related complications. Seeing others die like that makes me think it might happen to me too. It’s something I have to face and try to understand.” (IDI:6). The unpredictability of their condition led to a sense of resignation, with another patient stating, “The future seems bleak. We don’t see any aim or hope” (IDI:7).

Dependency on treatment and loss of independence added to the overall burden. The necessity of dialysis dictated patients’ daily schedules, limiting their ability to engage in personal or professional aspirations. One participant shared, “I can’t think about doing things like playing football or singing. My focus is on sustaining life, creating schedules, and thinking about how to survive. I had to return from London, where I was studying HRM. It was a significant loss, but I had to continue my treatment” (IDI:3). Another participant emphasized how dialysis had become an unavoidable part of life: “This is my future—continuous dialysis. I can’t do anything else. It’s necessary to keep doing dialysis, and I feel like this is normal now. There’s no point in worrying about the future; whatever happens, happens” (IDI:12).

A significant financial burden further intensified patients’ struggles, with economic constraints playing a major role in shaping their experience. Higher socioeconomic status was associated with significantly lower disease burden scores (p < 0.0001), suggesting that financial stability eases some of the challenges of long-term dialysis. Those facing financial difficulties expressed constant worry about affording treatment and daily necessities. One participant admitted, “I worry about not having enough money for treatment. This illness makes me worry about what to eat and how to manage everything” (IDI:9).

Despite these difficulties, coping strategies and adaptation mechanisms emerged, with some patients finding solace in family support, positive thinking, and acceptance. Family support was frequently cited as a crucial factor in reducing emotional distress. One participant shared, “Mentally, I haven’t experienced much pressure, maybe because my family supports me well. Someone is always there to console me, so I don’t feel much mental stress” (IDI:2). Another emphasized the role of loved ones in sustaining morale: “The biggest support comes from family and friends. Their support and consolation are what keep us going. Having people who stand by your during difficult times helps a lot” (IDI:3).

Positive thinking was another key coping mechanism, with patients striving to remain hopeful despite the uncertainties of their condition. One participant said, “I used to worry about my child becoming an orphan, but I realized that I need to stay strong for their sake” (IDI:2), while another affirmed, “I have to accept that I need to live. Whatever happens, I have to endure it and move forward with energy” (IDI:7). Some patients attempted to normalize their condition, accepting their circumstances with resilience. One patient reflected, “I used to have a lot of anxiety, thinking the world was ending. It was very difficult, and I still experience it, but now I’ve come to terms with it” (IDI:13). Another acknowledged their situation with pragmatism: “I believe that everyone has to die one day, whether they have a disease or not” (IDI:2).