Ideal in principle, limited in practice: Shared decision-making in Chronic Kidney Disease Care in Urban South India

Ideal in principle, limited in practice: Shared decision-making in Chronic Kidney Disease Care in Urban South India | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Ideal in principle, limited in practice: Shared decision-making in Chronic Kidney Disease Care in Urban South India Maya Annie Elias, Van Damme, Grace Marie V Ku, Edwin Wouters This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6963320/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Objective To examine the illness trajectory and decision-making among people with CKD, and to explore the scope of Shared Decision-Making (SDM) in an urban Indian context. Setting: The study was conducted in Bangalore, the capital city of Karnataka state, in Southern India. Participants: A total of 12 individuals diagnosed with kidney failure, and 6 family members from private and Government run dialysis centres participated in the study. Design and methods: Prospective qualitative research design to follow-up individuals who had been diagnosed with kidney failure. The participants were recruited from August to December 2021 and were followed up until April 2023. The data was collected through in-depth interviews and thematic analysis was conducted. Results We found that clinicians played a dominant role in decision-making, particularly in selecting the treatment modality – offering hemodialysis as the only lifesaving treatment. The key decisions encountered by people with kidney failure were regarding (a) the treatment modality soon after the diagnosis, (b) treatment setting/centres, and (c) other day-to-day decisions, such as diet, employment, living arrangements and long-term care planning. There was a lower level of awareness and uptake of peritoneal dialysis and kidney transplant. Financial implications and peer pressure emerged as the most important factors influencing patients’ decisions regarding the treatment modality and specific dialysis setting and centre. Conclusion Our findings indicate that current CKD care in India predominantly follows a traditional physician-centred approach. Improving patient education and actively involving patients in decisions about available treatment options is essential, considering their unique circumstances related to CKD. It is crucial to adapt the existing shared decision-making frameworks to incorporate key elements such as financial implications and peer support, as these significantly impact decision-making, especially in low- and middle-income (LMIC) settings. Trial registration Not applicable since the study is not a clinical trial Chronic Kidney Disease Hemodialysis shared decision making treatment trajectory Figures Figure 1 Figure 2 Background The burden of chronic kidney disease (CKD) has emerged as a global public health challenge. The Global Burden of Disease (GBD) studies have shown that CKD was one of the leading causes of worldwide mortality, corresponding to 1.2 million deaths in 2017 alone( 1 ). Currently, about 10% of the general population is affected by CKD worldwide, amounting to more than 800 million individuals( 1 , 2 ). It is estimated that CKD will become the fifth leading cause of premature mortality by 2040( 3 ). India – the focus of this study – has a substantial burden of CKD as well: a recent systematic review reported prevalence of CKD among general population as high as 16%( 4 ). Although precise prevalence data are unavailable, it is estimated that over 300 million individuals in the country are currently affected by CKD( 5 ). Chronic kidney disease (CKD) is a progressive condition characterized by the gradual loss of kidney function over time. In its most advanced form—kidney failure—renal replacement therapy becomes necessary, either in the form of dialysis or transplantation. There are two types of dialysis: hemodialysis, in which blood is filtered through an external machine via a central venous catheter or, preferably, a surgically created arteriovenous (AV) fistula; and peritoneal dialysis, which uses the body’s peritoneal membrane as an internal filter. AV fistulas are preferred for hemodialysis access because they last longer and have fewer complications, though they require 6–12 weeks to mature, during which temporary catheters are used. Haemodialysis is usually performed three times a week; each session typically takes three to four hours( 6 ). Peritoneal dialysis offers more flexibility—patients can perform treatment at home—but carries its own challenges, including infection risk and complex self-management( 7 , 8 ). In India, hemodialysis is the predominant form of kidney replacement therapy, accounting for over 95% of patients receiving this treatment( 9 ). Although kidney transplantation offers the best long-term outcomes, it is uncommon in low- and middle-income countries due to limited transplant facilities, high costs, and concerns about post-surgical complications( 10 ). The average waiting time for a kidney transplant in India is 3–5 years ( 11 , 12 ). Decision making among people with CKD People living with CKD face critical treatment decisions, considering the complexities of each option alongside financial implications, lifestyle adjustments, and the overall impact on their well-being. As the illness progresses, decision-making becomes even more challenging, as they have to manage comorbidities, respond to emergencies, and plan for end-of-life care ( 13 , 14 ). Patients must also weigh personal values, family responsibilities, and available resources, all of which significantly shape their health outcomes( 15 ). Understanding patients’ key decisions across their CKD journey—and the factors that shape those choices—can inform more responsive, person-centred care. Numerous models and frameworks have been developed to understand decision-making in the context of chronic conditions. Among these, the Shared Decision-Making (SDM) model is a widely used approach that emphasizes collaboration between patients and healthcare providers to support informed, value-based choices ( 16 ). This decision making process involves sharing information, discussing available treatment options, and weighing the potential benefits and risks associated with each choice( 17 , 18 ). While healthcare practitioners bring clinical expertise, SDM acknowledges that patients are experts in their own lives, ensuring that treatment plans align with their individual circumstances and goals( 19 ). SDM has been shown to significantly improve patient outcomes, satisfaction, and adherence to treatment plans, especially in the context of chronic conditions ( 20 , 21 ). It has also been reported that involving patients in their care decisions can mitigate the psychological burden of chronic conditions, reducing anxiety and enhancing a sense of empowerment ( 22 ). In the context of chronic conditions like CKD, where treatment options may be limited, costly, or associated with significant risks, SDM becomes particularly relevant. By engaging patients in discussions about the benefits, risks, and trade-offs of different treatment options, healthcare providers can help patients make decisions that are consistent with their values and preferences while also considering the practical realities of their circumstances( 23 , 24 ). Figure 1 depicts a shared decision framework for advanced kidney disease( 25 ). The existing literature on decision-making among individuals with CKD has focused primarily on treatment modality choices in high-income settings. Little research has explored the broader decision-making processes and the factors influencing patient choices at different stages of illness, particularly in LMICs. Restricted healthcare access, inadequate health insurance coverage, financial constraints, and lower health literacy levels further complicate decision-making for individuals with CKD in these settings. Understanding how patients navigate these challenges is essential for developing more responsive, patient-centred models of care that address not only clinical needs but also the social, economic, and informational barriers that shape health-related decisions. To address this research gap, we conducted a prospective follow-up study in an urban setting in South India, mapping the illness trajectory and health-seeking behaviour of individuals diagnosed with chronic kidney failure. We interviewed both patients and family members to gain a holistic perspective on the decision-making process. Our objectives were to (a) identify the key decisions faced by patients immediately after diagnosis and (b) understand the factors influencing these decisions across individual, family, community, and health system levels. Drawing on existing models of Shared Decision-Making (SDM) in chronic care, we then explored the scope, feasibility, and relevance of SDM in this context, focusing on the conditions that enable or constrain its meaningful implementation and adoption in routine care. Methods Study setting This study was conducted in Bangalore, the capital city of Karnataka state, in Southern India. The urban district of Bangalore covers an area of 2196 Sq. kms and has more than 9 million population. There are approximately 80–100 dialysis centres in Bangalore, both integrated within large hospitals and operating independently, which offer haemodialysis services for people with kidney failure. Study design and sample selection We employed a prospective qualitative design to follow up individuals diagnosed with kidney failure. A qualitative design deemed appropriate for this study as it enabled us capturing rich, in-depth narratives of treatment experiences and decision-making. Using purposive sampling, we recruited 12 patients—each diagnosed within the previous six months—from both private and government-run dialysis centres. The sample included men and women across a range of ages and care settings to ensure diverse perspectives. Family members were also invited to share their perspectives on treatment trajectories and decision-making; six who were present at the initial interviews consented to participate. Participants were enrolled between August and December 2021 and followed up until April 2023. Data collection and analysis In-depth interviews were conducted with persons with kidney failure and their family members present with them. Using a topic guide, the interviews focused on (a) Illness trajectory and care seeking till date, (b) key decisions since the diagnosis of kidney failure and (c) the factors which have influenced these decisions. Each interview took about 45–60 minutes. The interviews were conducted in the native spoken language Kannada, recorded, and later transcribed and translated into English. Subsequently, each participant was followed up every quarter through in-person visit, or when visits were not possible, by telephone interviews. Each participant was followed up at least four times during the study period. These follow ups were carried out to assess whether there have been any modifications in dialysis modality, facility, or any other personal and lifestyle related aspects and if so, to document such changes. The interview transcripts were imported into NVivo 12 for analysis. We conducted a thematic analysis, which involved systematically coding the data to identify patterns and recurring ideas. Initial coding was carried out by the first author and iteratively refined through discussions with the other three authors. Codes were developed inductively from the participants’ narratives and further refined through repeated readings of the transcripts. These codes were then clustered into broader themes that reflected the key issues surrounding the decision-making experiences shared by participants across the study period. The study was conducted by a trained qualitative researcher with prior experience in similar studies. The relationship with the data was critically examined through regular discussions with senior co-authors, during which emerging themes, interpretations, and analytical directions were collaboratively reviewed. These meetings were crucial in enhancing the reflexivity and analytical rigour of the study. Results A total of 12 individuals diagnosed with kidney failure were included in the study and followed up quarterly. Of these, six were undergoing dialysis in private centres, four in government centres, and two were not on dialysis. During the follow-up period, two participants died—one was on dialysis and had registered for a transplant, while the other was not receiving dialysis. Hypertension and diabetes emerged as the primary risk factors for CKD among the respondents. The participant profiles are provided in Table 1 . Table 1 Participant profiles Participant profile Age group 30–40 years 41–50 years 51–60 years > 60 years 5 4 1 2 Gender Male Female 6 6 Education Primary school High school Graduation 6 4 2 Monthly family income in USD $ 375 (INR 30000) 5 5 2 Risk factors Undetected hypertension Diabetes Hypertension and diabetes 8 2 2 Dialysis setting Private Government 6 4 Other details People not on dialysis Persons enrolled for transplant 2 1 Key decisions faced by individuals with kidney failure We found that the key decisions taken by people diagnosed with kidney failure were regarding (a) the treatment modality soon after the diagnosis, (b) treatment setting/centres, (c) other day-to-day decisions, such as diet, employment, living arrangements and decisions regarding long-term care planning. Diagnosis and decisions regarding treatment modality At the time of initial interviews, all except two participants were started on haemodialysis. Most of them reported that they were caught by surprise at the hospital when they were told that their kidneys had failed, and that they needed to undergo dialysis immediately. Though they have had some symptoms such as headache, vomiting or occasional breathlessness prior to the diagnosis of kidney failure, they either ignored it or sought only symptomatic care at nearby clinics or nursing homes. Most respondents sought specialist care only when symptoms such as oedema or breathlessness were too severe to ignore, or when it affected their functional ability. Most of them were admitted to hospital emergency where they were started on haemodialysis as an emergency procedure. Due to symptom severity, participants were not able to decide for themselves, and the family members often gave their consent for catheterisation surgery and emergency dialysis. The following quotes illustrate how the respondents came to know about their diagnosis and the need for dialysis. I had high blood pressure, but I didn't know it. Then, I developed swelling in my feet. I couldn't sleep, and I wasn't able to walk properly. I coped like that for 4 to 5 months, but I felt something was wrong with me. Then my urinary bladder developed swelling, so I went to get myself checked and found out that my kidneys were not working. They said the only option was dialysis. (P1_41–50 years, male) I didn’t have medical check-ups earlier because I had a healthy and strong body. So, I didn't feel the need for any check-ups. I used to get headaches and a vomiting sensation once in a while, which I thought were related to my eating habits. So, I was shocked when they suddenly told me that my kidneys had stopped working and I needed to start dialysis. (P12_41–50 years, male) Later, when I wasn't feeling well, I went to (name) hospital, where they told me the medicine dosage was inadequate. They said I should have gone for regular check-ups. I didn't know this, and by then, my creatinine levels were very high, and they said I had to be on dialysis. (P4_41–50 years, male) Many of them resorted to alternative therapies and herbal medicines once they were informed about their high creatinine levels in the hospitals. They were often advised by relatives and friends about these therapies, as an alternative to dialysis. Some of them even tried to continue these therapies along with dialysis, as they felt it would help in curing their condition. My mother took (name of herbal drink) for nearly a year. It put a high burden on her kidneys. It is a complete protein supplement, and it didn’t suit her. After about a year of using it, she suddenly developed fever and chills and was diagnosed with a urinary tract infection (UTI). Following the UTI, protein started leaking from her kidneys, which eventually led to kidney failure. (Family member_P6) After starting Ayurveda, I checked my creatinine level, and it had reduced by 1 or 2 points. Then I started feeling very weak and couldn't even walk... Although my creatinine levels initially decreased, I don't know what happened, suddenly it increased to 15 (mg/dL). It was decreasing for a few months, then suddenly it spiked, and I developed breathing difficulties. My condition became serious, I was admitted to the hospital, and they inserted a catheter. (P10_30–40 years, male) They bring this herbal juice door to door and sell it, and once I bought one bottle and started taking it in the morning and evening. They said it would normalize my blood sugar and creatinine levels. I took it for two weeks, and when I went for the next blood test, my creatinine levels had increased even more. My son scolded me for taking the juice, so I stopped using it. (P5_51–60 years, male) Decisions about the place: fistula surgery and routine dialysis Participants reported that once the diagnosis was confirmed, they were informed about the necessity of maintenance dialysis. Grown-up employed children were found to play a key role in choosing the dialysis centre for their ill parent. According to their financial ability, they weighed the options for maintenance dialysis and chose the most appropriate one. People who had insurance cover for their ill parent continued the maintenance dialysis from private centres and the ones who couldn't afford private facilities, transitioned to government-run or NGO-operated facilities that provided subsidies or lower rates. All respondents reported that they had their AV fistula surgery and started their dialysis in private dialysis centres. Other decisions- diet/lifestyle modifications and advance care planning People on dialysis were faced with difficult treatment and lifestyle decisions on a day-to-day basis. Arranging finances for weekly dialysis and household expenses was often a challenge. Medicines and monthly blood tests added to their financial woes. One participant who had registered for transplant (who passed away during follow up) had to sell her house to arrange the necessary funding for transplant. Some participants receiving dialysis at private centres relied on government hospitals for erythropoietin injectables (for anaemia) and monthly blood tests. However, due to frequent stock outs of these injectables, they had to purchase them from private facilities at their own expense when necessary. In (name) hospital, they have become smart; last two times when we went, they said it (erythropoietin) is out of stock and asked us to buy from outside, it costs about 2500 rupees (USD 30) just for the injection. It is very difficult for us. We have decided to sell our house and use that money for the transplant (P2_30–40 years, female) All participants were unemployed at the time of interview. Two of them reported that they lost their jobs during COVID, and they are trying to find another job. Others reported that they found it difficult to manage the dialysis schedules while they were working, and they had to quit their job. All women respondents were housewives and reported that they were unable to do any household work due to their dialysis schedule and physical weakness. I tried to go for work and do dialysis. I had to finish eight-hour duty and then go for dialysis. After getting this illness, some days I won’t feel like eating anything. Then I was not able to do the work, I used to feel very weak. The old director was very nice and if he was there, I could have continued. The new management was very strict, so I quit (P9_30–40 years, male) Most participants were found to be actively exploring different options for the required financial support for dialysis. Some of them reported of meeting with political and religious leaders to explore financial support. From church they give money for two dialysis every month. The remaining money I have to arrange. I have borrowed money from my friends, but they know I can’t give it back, since I stopped working. Sometimes when I don’t have money, I don’t pay. I pay next time for two dialysis, together. (P7_30–40 years, male) Factors influencing the choice of treatment modality: hemodialysis vs. transplant We found that haemodialysis was presented to most participants as the only lifesaving treatment option. Since many were caught unaware by the sudden diagnosis and progression to kidney failure, they had little time to process the information or consider alternative options, resulting in limited opportunities for informed decision-making. Most of the time, due to symptom severity, participants were not able to decide for themselves; rather, the family members had to give consent on their behalf for catheterisation surgery and emergency dialysis. Though most participants had learned about kidney transplantation from their peers, they did not have a favourable attitude towards it. Only one study participant had registered for transplant. Personal beliefs about the transplant and worries about the donor (in case of family members) prevented them from registering for transplant. Financial constraints were another major hurdle for transplant. Some of them reported that they were not willing to spend a lot of money for a procedure which may not succeed and could result in pain and suffering for their family members. No, I haven't registered (for transplant) ...If a blood relative donates the kidney, it works well. But if we receive a kidney from other donors, it won't last long, and all the money we spend gets wasted. I saw someone at (name) hospital who had to undergo dialysis again after two years of transplantation. (P1_41–50 years, male) I haven’t registered for a transplant. They considered my mother, and she was willing, but I declined. I don't want her to struggle without kidneys. Sometimes transplants fail; it's not always successful. Even after the surgery, we'd need to be extremely cautious. If I were to take her kidney and then engage in stupid things like drinking with friends, it wouldn't end well. I've seen many cases where transplants didn't work out, so we decided against it. As long as she's alive, let her live healthily. Why make her suffer too? (P9_30–40 years, male) When I cannot have my original thing (kidney), I don’t want to take it from others to survive. And another thing, I've heard that only 2 or 3 people have survived after transplant. In the dialysis centre where I go, many people died within 40 days of kidney transplantation. My colleague's wife passed away within two months of her kidney transplant. I feel it's better to stick with dialysis if it works. It's a simple process. I only must endure 5 minutes of discomfort from the needle prick. (P7_30–40 years, male) Two participants were not started on dialysis, as their families decided against it. One family member explained that he chose not to enrol his mother for dialysis because she was physically too weak to undergo the various tests and surgical procedures required before initiating haemodialysis. The other participant had undergone multiple surgeries to create a functioning fistula, but each attempt led to complications. After these repeated setbacks, the family decided not to proceed with haemodialysis. Already my mother underwent three surgeries, every time, it (fistula) gets blocked, and they say put another one. She said it is enough. She is controlling her diet and water. We are planning to start her on Ayurveda treatment (Family member_P3) My mother has asthma, high blood pressure and diabetes, already she is too weak. We don’t want to put her through surgeries, and then we don’t know if her body is able to bear it. We told this to the doctor, and he said it is up to us (Family member_P8) Factors influencing the choice of dialysis centres Various factors influenced the participants’ decisions regarding their choice of dialysis centres. The dialysis charges and their purchasing power were the main deciding factors for many respondents for choosing a dialysis centre. Only three respondents had any insurance coverage. Other important considerations were physical proximity to the dialysis centre and the availability of emergency services. There was a clear preference for hospitals over standalone dialysis centres, due to the range of services, including emergency admissions. Peer influence was a major factor influencing decisions related to fistula surgery and choosing the dialysis centres. The attitude of the healthcare providers and the perceived quality of care were other influencing factors in the choice of dialysis centre. First, I was going to (name) hospital, there they were charging 2500 rupees, then (name) hospital was nearer to my house, so I went there. Now I pay 1500 rupees here. The other hospital was costlier, and if my condition worsens during dialysis or later, they can’t admit there, as they did not have ICU. So, this hospital works for me. (P5_40–50 years, male) Many people from Hulimavu and Gottigere prefer coming over to (hospital name) because they find it more comfortable here. They treat us very well here; I feel fortunate that it's nearby. My son drops me off, and once I begin dialysis, I inform him. He calculates the time and picks me up accordingly. It's very convenient. (P6_above 60 years, female) All participants had started dialysis from the private centres. Respondents recruited from government centres reported that they were unable to afford the costs at private facilities and therefore shifted to government-run centres, which offered dialysis at subsidized or lower rates. Factors influencing decisions on lifestyle and long-term care planning Participants shared that when they were faced with decisions regarding long term management of the condition, the key influencing factors were the available financial resources and family support. During the second quarter follow up, one participant shared that he has shifted to his hometown, a tier 2 city, to be able to afford dialysis expenses. With the amount I spend on two dialysis sessions in Bangalore, I can afford three sessions here. Blood tests too are less expensive here. Considering the high cost of living in Bangalore, where even vegetables are pricey, staying here seems more financially viable. Moreover, I have people I can rely on for emergencies . (P5_50–60 years, male) Family support emerged as the key influencing factor in decisions related to treatment and long-term care planning. Family members often extended the necessary material as well as emotional support; many participants were accompanied by their family members for dialysis. Two of them reported their wives taking up jobs to support their family and to be able to afford the dialysis expenses of their spouses. Grown up children too, were found to extend their support to their ill parents. They tried to bring their ill parents to Bangalore for financial as well as logistic reasons. Once I became unwell, my son stopped going for studies, he said he will find a job to support our family. That time I felt bad about that. But he is now working, and his salary is the only income we have. (P12_41–50 years, male) A participant undergoing maintenance dialysis revealed that he had to send his children to stay with his sister in another city due to the financial strain of covering their school fees along with his dialysis expenses. This year, I sent my kids to stay with my sister, where they attend a government school with no fees. The school provides free meals, including eggs, so it is manageable. Here, I couldn’t send them because the school fees are very high. Until last year, I somehow managed despite the difficulty. But now it’s impossible, as a lot of money is needed for my dialysis and medications (P9_30–40 years, male). A few participants reported experiencing stigma from others, which they attributed to their altered appearance and the presence of a fistula in their arm, which was difficult to hide. As a result, they preferred to avoid going out or socializing. Even my relatives look at me differently. I don’t like to go anywhere because you have to explain your problem to everyone. Sometimes they won’t eat from the same plate and give you a separate plate and glass. Because of that, I don’t like to visit them (P10_30–40 years, male). Yes, we should not develop mental problems. We have to be bold. Sometimes people won’t come near us, thinking it might spread to them. When they do come close and ask about my illness, I tell them there is nothing to be scared of, and it doesn’t spread (P12_41–50 years, male). Shared decision making: too idealistic? We found that clinicians played a dominant role in decision-making, particularly in selecting the treatment modality. Haemodialysis was typically presented as the only life-saving treatment option, leaving little room for patients or families to consider alternatives or engage in shared decision-making at that stage. None of the study participants were educated about peritoneal dialysis nor was it offered as an option. Personal characteristics such as age and health status were considered by family members in choosing/rejecting haemodialysis as the appropriate intervention. When it came to decisions regarding the location of fistula surgery or selection of a dialysis centre for long-term haemodialysis, the responsibility largely shifted to the earning family members. Families often spent significant amounts of money on initial consultations and fistula procedures, seeking second opinions from various hospitals within the city and even travelling to larger cities. Considerable time was spent confirming the diagnosis and determining where to undergo the fistula procedure and subsequently access dialysis services. Choices were often shaped by recommendations and experiences shared by others undergoing dialysis, as well as their families. In addition, many relied on internet searches to gather information about kidney disease and available treatment centres. The most important consideration in these decisions was the affordability of dialysis; in the absence of health insurance, the financial burden had to be borne entirely by the family. As a result, they selected facilities that fit within their available financial resources. Patients themselves were rarely involved in these choices and generally complied with the decisions made by healthcare providers or family members. Yes, we got him admitted in (name) hospital, and they asked us to put in a fistula. Then we consulted with many doctors and even took him to a tertiary hospital and consulted with Dr (name) who is from America. We even went up to Punjab for a specialist opinion. Within two months, we had to perform five catheterizations, and his creatinine levels remained at 19 or 20. (family member_P7) We went to Mysore for the fistula surgery, they were ready to do it at (hospital name), then other patients told me not to do it, because many of them who did it from there developed infection, and they had to do it again. This doctor in Mysore was very good, so we took the address from the internet, and we went there for the surgery. (P9_30–40 years, male) My brother brought me to Bangalore for a check-up, and we visited (name) hospital where I underwent the fistula surgery. However, it swelled up, causing significant issues. Upon hearing about this centre from other patients, we researched online and decided to come here for dialysis. It's been good here. (P11_30–40 years, female) The figure below illustrates the key decisions encountered by people with kidney failure, factors influencing these decisions and the actors involved in decision making. Discussion This study throws light on the critical decisions and their influencing factors faced by people with kidney failure in an urban setting within an LMIC context. Our findings indicate that clinicians presented haemodialysis as the sole life-saving treatment option; most participants were too ill and were advised emergency dialysis, and their family members felt pressured to take a decision immediately while the patient was admitted in the ICU. These findings are consistent with other studies conducted on CKD; Sheu et al found that many of their study participants were confronted with an urgent need to initiate haemodialysis when they were extremely ill( 26 ). Similarly, Winterbottom and colleagues found that respondents perceived their key decision as “dialysis versus no dialysis,” rather than choosing one dialysis modality over another ( 27 ). The lack of awareness on peritoneal dialysis and reluctance to undergo among our study respondents suggest that the information they received about these treatment options were limited. Various studies have underscored the informational needs of people with CKD regarding the diagnosis, available therapies, and the respective advantages and disadvantages of these treatments( 28 , 29 ). These studies have highlighted the necessity for timely, comprehensive, and tailored education for individuals with CKD and their family members ( 30 – 33 ). Such individualized education can empower them to adopt effective self-management practices, fostering greater autonomy and improved health outcomes ( 34 , 35 ). Financial resources emerged as the primary determinant influencing the treatment trajectory, decisions regarding treatment and long-term care planning of people diagnosed with kidney failure. The burden of out-of-pocket expenditure is a formidable barrier, impeding access to essential healthcare services in India, especially in the context of chronic conditions such as CKD ( 36 ). Earlier studies too have reported that people with CKD face financial strain from diagnostic tests, medications, dialysis, or transplants, forcing many to skip dialysis sessions or discontinue treatment( 37 , 38 ). Our study found that peer influence is a major factor in shaping decisions taken by individuals with CKD. Participants were greatly moved by the experiences and views of fellow individuals with CKD, and it greatly influenced the way they viewed different treatment options and the quality of available services. A systematic review conducted by Morton and colleagues reported similar findings, indicating that people with CKD frequently identified with their peers' experiences, which prompted them to even opt out of certain kidney replacement therapies( 39 ). Similarly, Elliot and colleagues discussed how the empathy and support received from peers helped people with CKD to navigate through the uncertain course of illness, assert more control over their lives and to create a sense of optimism ( 40 ). The role of family in the context of chronic illnesses are well documented( 41 , 42 ), ( 42 ). We found that the diagnosis of kidney failure and initiation of dialysis resulted in a notable alteration in family dynamics, and families tried to mobilize all available support networks to sustain their relatives’ lives. This finding underscores the importance of incorporating family-centred approaches in the management of CKD. Recognizing and supporting families as integral parts of the care team—and, if they wish, tailoring involvement to their preferred level—can lead to more effective management strategies, improved patient outcomes, and enhanced overall well-being for individuals with CKD.( 43 , 44 ). Our study findings indicate that people with kidney failure were actively looking for a cure and that motivated them to seek alternative therapies before or along with allopathic treatment. Other studies have likewise reported a high usage of alternative therapies among people with chronic illnesses( 45 ). A recent study on complementary and alternative medicine use among the chronically ill reported that respondents resorted to alternative therapies as a desperate attempt at pain relief or as a trial-and-error method to see if these treatments worked, often prompted by family members or significant others. ( 46 ). However, in our study, none of the participants reported of any positive effects from alternative therapies. In fact, a few individuals mentioned experiencing adverse effects. Our study findings demonstrate the limited scope of shared decision-making in current CKD care within the Indian context. Although SDM models emphasize collaborative dialogue between healthcare providers and patients, our study suggests that such interactions are constrained by a range of systemic and contextual factors. Financial considerations significantly influenced the feasibility of treatment options, compelling families to prioritize affordability over medical preference. In this context, the burden of decision-making often shifted away from collaborative discussion toward provider-led recommendations and caregiver-driven financial calculations. Additionally, peer influence emerged as a key determinant in shaping how patients understood and responded to their treatment choices—yet this dynamic is often overlooked in conventional SDM models. To be meaningful in resource-constrained settings, SDM practices must move beyond the provider–patient dynamic and include the broader ecosystem of decision-making—encompassing financial limitations, familial roles, and the influence of peer experiences. Tailoring SDM to reflect these realities can support more informed, context-sensitive choices and promote equity in CKD care in such settings. Strengths and limitations of the study To our knowledge, this is the first study to explore the factors affecting health decision making among individuals with CKD and the appropriateness of existing SDM frameworks in an LMIC context. However, it is not free from limitations. Our study participants were individuals recently diagnosed with kidney failure and undergoing short-term dialysis, which may limit the applicability of our results to this population. We only explored patient and family perspectives related to decision-making in CKD. It is important to also understand provider-level factors and other stakeholder perspectives to gain a comprehensive understanding of decision-making dynamics among people with CKD. Nevertheless, we believe this study may inspire future researchers in further exploration of the decision-making processes of people with CKD in different contexts. Conclusion Our study is a pioneering work on the decision-making dynamics among individuals with CKD in India. Our findings reveal how out-of-pocket costs, peer influence, and family roles shape treatment and long-term care choices. These findings underscore the urgent need to: a) expand financial protection schemes to include CKD care; b) develop peer-support programmes to provide credible lived-experience guidance alongside clinical advice; c) adapt shared decision-making frameworks to incorporate socio-economic trade-offs, peer input, and family involvement; d) strengthen patient and community education on prevention and management of CKD; and e) regulate herbal products aggressively marketed in India that claim to cure diabetes, CKD, and other chronic illnesses. Further research is needed to understand the provider-level factors and other stakeholder perspectives influencing patient decision-making regarding CKD and its management. Abbreviations CKD Chronic Kidney Disease GBD Global burden of Disease AV Arteriovenous LMIC Low-and Middle-Income Countries SDM Shared Decision Making Declarations Ethics This study protocol was approved by the Ethics Committee for the Social Sciences and Humanities of the University of Antwerp, Belgium (ref no: SHW_18_82). We sought permission from the dialysis centre authorities to meet with the study participants. Informed consent was taken, and confidentiality was maintained by removing all identifying details from the interview transcripts, and the transcripts were only handled by the first author. Consent for publication Not applicable Trial registration Not applicable since the study is not a clinical trial Data availability The datasets for the current study are can be made available from the corresponding author on reasonable request. Author contributions M.A. Elias conceptualized the study in consultation with W.V. Damme and E. Wouters. M.A. Elias collected the data, conducted the initial analysis, and prepared the first draft of the manuscript. W.V. Damme and E. Wouters contributed to the study design, data analysis, and manuscript writing. G.M.V. Ku contributed to data analysis and manuscript writing. All authors participated in data analysis discussions, revised the manuscript, and approved the final draft. Conflict of interest None to declare Funding Authors have not received any funding for this study. Acknowledgements We thank Dr. Thriveni S. Beerenahalli, and Mr. Munegowda C.M. for their assistance in coordinating with dialysis centre authorities for data collection. References Bikbov B, Purcell CA, Levey AS, Smith M, Abdoli A, Abebe M, et al. Global, regional, and national burden of chronic kidney disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. The Lancet. 2020;395(10225):709–33. Kovesdy CP. Epidemiology of chronic kidney disease: an update 2022. Kidney Int Suppl. 2022 Apr;12(1):7–11. Foreman KJ, Marquez N, Dolgert A, Fukutaki K, Fullman N, McGaughey M, et al. Forecasting life expectancy, years of life lost, and all-cause and cause-specific mortality for 250 causes of death: reference and alternative scenarios for 2016–40 for 195 countries and territories. The Lancet. 2018 Nov;392(10159):2052–90. Shrestha N, Gautam S, Mishra SR, Virani SS, Dhungana RR. Burden of chronic kidney disease in the general population and high-risk groups in South Asia: A systematic review and meta-analysis. Bikbov B, editor. PLOS ONE. 2021 Oct 14;16:e0258494. Liyanage T, Toyama T, Hockham C, Ninomiya T, Perkovic V, Woodward M, et al. Prevalence of chronic kidney disease in Asia: a systematic review and analysis. BMJ Glob Health. 2022 Jan;7(1):e007525. Jha V, Kohli HS, Agarwal SK, John GT, Kher V, Narula AS, et al. Indian Society of Nephrology Guidelines for Hemodialysis Units. Indian J Nephrol. 2012;22. Okpechi IG, Jha V, Cho Y, Ye F, Ijezie CI, Jindal K, et al. The case for increased peritoneal dialysis utilization in low‐ and lower‐middle‐income countries. Nephrology. 2022 May;27(5):391–403. Biesen WV, Veys N, Lameire N, Vanholder R. Why less success of the peritoneal dialysis programmes in Europe? Nephrol Dial Transplant. 2008 May;23(5):1478–81. Jha V, Ur-Rashid H, Agarwal SK, Akhtar SF, Kafle RK, Sheriff R. The state of nephrology in South Asia. Kidney Int. 2019 Jan;95(1):31–7. Boima V, Amissah-Arthur MB, Yorke E, Dey D, Fiagbe D, Yawson AE, et al. Determinants of willingness to accept kidney transplantation among chronic kidney disease patients in Ghana. BMC Nephrol. 2021 Dec;22(1):129. Shoaib M, Prabhakar U, Mahlawat S, Ramamohan V. A discrete-event simulation model of the kidney transplantation system in Rajasthan, India. Health Syst. 2022 Jan 2;11(1):30–47. Hindustan Times [Internet]. 2023 [cited 2024 Oct 7]. Kidney donation: Prerequisites for a kidney transplant, who can donate and all you need to know. Available from: https://www.hindustantimes.com/lifestyle/health/kidney-donation-prerequisites-for-a-kidney-transplant-who-can-donate-and-all-you-need-to-know-101703335738573.html Murray MA, Bissonnette J, Kryworuchko J, Gifford W, Calverley S. Whose Choice Is It? Shared Decision Making in Nephrology Care. Semin Dial. 2013 Mar;26(2):169–74. Muscat DM, Kanagaratnam R, Shepherd HL, Sud K, McCaffery K, Webster A. Beyond dialysis decisions: a qualitative exploration of decision-making among culturally and linguistically diverse adults with chronic kidney disease on haemodialysis. BMC Nephrol. 2018 Dec;19(1):339. Murray MA, Brunier G, Chung JO, Craig LA, Mills C, Thomas A, et al. A systematic review of factors influencing decision-making in adults living with chronic kidney disease. Patient Educ Couns. 2009 Aug;76(2):149–58. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared Decision Making: A Model for Clinical Practice. J Gen Intern Med. 2012 Oct;27(10):1361–7. Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R. Implementing shared decision making in the NHS. BMJ. 2010 Oct 14;341(oct14 2):c5146–c5146. Bomhof-Roordink H, Gärtner FR, Stiggelbout AM, Pieterse AH. Key components of shared decision making models: a systematic review. BMJ Open. 2019 Dec;9(12):e031763. Hole B, Scanlon M, Tomson C. Shared decision making: a personal view from two kidney doctors and a patient. Clin Kidney J. 2023 Sep 13;16(Supplement_1):i12–9. Hughes TM, Merath K, Chen Q, Sun S, Palmer E, Idrees JJ, et al. Association of shared decision-making on patient-reported health outcomes and healthcare utilization. Am J Surg. 2018 Jul;216(1):7–12. Desroches S. Shared decision making and chronic diseases. Allergy Asthma Clin Immunol. 2010 Dec;6(S4):A8, 1710-1492-6-S4-A8. Chiu HH, Chang SL, Cheng HM, Chao TF, Lin YJ, Lo LW, et al. Shared decision making for anticoagulation reduces anxiety and improves adherence in patients with atrial fibrillation. BMC Med Inform Decis Mak. 2023 Aug 22;23(1):163. Amir N, McCarthy HJ, Tong A. A working partnership: A review of shared decision‐making in nephrology. Nephrology. 2021 Nov;26(11):851–7. Verberne WR, Stiggelbout AM, Bos WJW, Van Delden JJM. Asking the right questions: towards a person-centered conception of shared decision-making regarding treatment of advanced chronic kidney disease in older patients. BMC Med Ethics. 2022 Dec;23(1):47. Kurniawan HI, Sciacca KR, Wachterman MW, Gelfand SL. Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population. Ann Palliat Med. 2024 Jul;13(4):938–47. Sheu J, Ephraim PL, Powe NR, Rabb H, Senga M, Evans KE, et al. African American and Non-African American Patients’ and Families’ Decision Making About Renal Replacement Therapies. Qual Health Res. 2012 Jul;22(7):997–1006. Winterbottom A, Bekker HL, Conner M, Mooney A. Choosing dialysis modality: decision making in a chronic illness context. Health Expect. 2014 Oct;17(5):710–23. Finkelstein FO, Story K, Firanek C, Barre P, Takano T, Soroka S, et al. Perceived knowledge among patients cared for by nephrologists about chronic kidney disease and end-stage renal disease therapies. Kidney Int. 2008 Nov 1;74(9):1178–84. Al Rahbi F, Al Salmi I. Awareness, Knowledge, and Perception of Chronic Kidney Disease Patients at Renal Medicine Outpatients’ Clinic. Saudi J Kidney Dis Transplant. 2020 Dec;31(6):1351. Cassidy BP, Harwood L, Getchell LE, Smith M, Sibbald SL, Moist LM. Educational Support Around Dialysis Modality Decision Making in Patients With Chronic Kidney Disease: Qualitative Study. Can J Kidney Health Dis. 2018 Oct 8;5:2054358118803323. Inkeroinen S, Koskinen J, Karlsson M, Kilpi T, Leino-Kilpi H, Puukka P, et al. Sufficiency of Knowledge Processed in Patient Education in Dialysis Care. Patient Prefer Adherence. 2021 May 27;15:1165–75. Burgess ER, Reddy MC, Davenport A, Laboi P, Blandford A. “Tricky to get your head around”: Information Work of People Managing Chronic Kidney Disease in the UK. In: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems [Internet]. Glasgow Scotland Uk: ACM; 2019 [cited 2024 Apr 3]. p. 1–17. Available from: https://dl.acm.org/doi/10.1145/3290605.3300895 Lewis AL, Stabler KA, Welch JL. Perceived Informational Needs, Problems, or Concerns among Patients With Stage 4 Chronic Kidney Disease. Chronic Kidney Dis. 2010;37(2). Narva AS, Norton JM, Boulware LE. Educating Patients about CKD: The Path to Self-Management and Patient-Centered Care. Clin J Am Soc Nephrol CJASN. 2016 Apr 7;11(4):694–703. Donald M, Beanlands H, Straus S, Ronksley P, Tam-Tham H, Finlay J, et al. Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study. Am J Kidney Dis. 2019 Oct 1;74(4):474–82. Bradshaw C, Gracious N, Narayanan R, Narayanan S, Safeer M, Nair GM, et al. Paying for Hemodialysis in Kerala, India: A Description of Household Financial Hardship in the Context of Medical Subsidy. Kidney Int Rep. 2019;4(3):390–8. Dodd R, Palagyi A, Guild L, Jha V, Jan S. The impact of out-of-pocket costs on treatment commencement and adherence in chronic kidney disease: a systematic review. Health Policy Plan. 2018 Nov 1;33(9):1047–54. Elias MA, Van Damme W, Wouters E. Accessibility and quality of haemodialysis services in an urban setting in South India: a qualitative multiperspective study. BMJ Open. 2022 Feb;12(2). Morton RL, Tong A, Howard K, Snelling P, Webster AC. The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ. 2010 Jan 19;340(jan19 2):c112–c112. Elliott MJ, Love S, Fox DE, Verdin N, Donald M, Manns K, et al. ‘It’s the empathy’—defining a role for peer support among people living with chronic kidney disease: a qualitative study. BMJ Open. 2022 May;12(5):e057518. Whitehead L, Jacob E, Towell A, Abu‐qamar M, Cole‐Heath A. The role of the family in supporting the self‐management of chronic conditions: A qualitative systematic review. J Clin Nurs. 2018 Jan;27(1–2):22–30. Lee AA, Piette JD, Heisler M, Janevic MR, Langa KM, Rosland AM. Family members’ experiences supporting adults with chronic illness: A national survey. Fam Syst Health. 2017 Dec;35(4):463–73. Tavakoli N, Momeni MK, Sarani H, Bouya S, Imani JAR, Askari H. Effectiveness of Family-Centered Care Education in Care Knowledge of Caregivers of Hemodialysis Patients. Med-Surg Nurs J [Internet]. 2022 Aug 13 [cited 2024 Apr 8];11(1). Available from: https://brieflands.com/articles/msnj-130292.html Deek H, Hamilton S, Brown N, Inglis SC, Digiacomo M, Newton PJ, et al. Family-centred approaches to healthcare interventions in chronic diseases in adults: a quantitative systematic review. J Adv Nurs. 2016;72(5):968–79. Clarke TC. The Use of Complementary Health Approaches Among U.S. Adults with a Recent Cancer Diagnosis. J Altern Complement Med. 2018 Feb;24(2):139–45. Chatterjee A. Why do chronic illness patients decide to use complementary and alternative medicine? A qualitative study. Complement Ther Clin Pract. 2021 May 1;43:101363. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6963320","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":485504687,"identity":"3e404cfa-76d4-4195-97db-908d60f3b1ff","order_by":0,"name":"Maya Annie Elias","email":"data:image/png;base64,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","orcid":"","institution":"University of Antwerp","correspondingAuthor":true,"prefix":"","firstName":"Maya","middleName":"Annie","lastName":"Elias","suffix":""},{"id":485504688,"identity":"70428fd2-3813-4a15-81a5-a77b34105c3c","order_by":1,"name":"Van Damme","email":"","orcid":"","institution":"Institute of Tropical Medicine","correspondingAuthor":false,"prefix":"","firstName":"Van","middleName":"","lastName":"Damme","suffix":""},{"id":485504689,"identity":"fa394e92-0bcf-4aa9-bcef-ee1ad423d978","order_by":2,"name":"Grace Marie V Ku","email":"","orcid":"","institution":"Institute of Tropical Medicine","correspondingAuthor":false,"prefix":"","firstName":"Grace","middleName":"Marie V","lastName":"Ku","suffix":""},{"id":485504690,"identity":"55a3a376-9d08-4db7-bcac-aa0aa38d47af","order_by":3,"name":"Edwin Wouters","email":"","orcid":"","institution":"University of Antwerp","correspondingAuthor":false,"prefix":"","firstName":"Edwin","middleName":"","lastName":"Wouters","suffix":""}],"badges":[],"createdAt":"2025-06-24 08:23:24","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6963320/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6963320/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":87047557,"identity":"3428cec8-bd6b-4a50-908c-d4060344ba63","added_by":"auto","created_at":"2025-07-18 14:43:35","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":172233,"visible":true,"origin":"","legend":"\u003cp\u003eShared decision making in patients with advanced kidney disease\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e1\u003c/sup\u003e Diagram reproduced in accordance with \u0026nbsp;\u003ca href=\"https://creativecommons.org/licenses/by-nc-nd/4.0/\"\u003eCreative Commons Attribution-NonCommercial-NoDerivatives 4.0 International\u003c/a\u003e license\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-6963320/v1/25482191596f81453d5d728d.png"},{"id":87046067,"identity":"235772b1-bbb6-4197-b2c2-759bbafc083d","added_by":"auto","created_at":"2025-07-18 14:35:35","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":71611,"visible":true,"origin":"","legend":"\u003cp\u003eDecision making among people with kidney failure in urban India\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-6963320/v1/bc988bbbeb0b04e72e43ef02.png"},{"id":103404067,"identity":"b9f013cb-3f67-405c-8a07-3aee40e1ae1d","added_by":"auto","created_at":"2026-02-25 09:44:56","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1069369,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6963320/v1/78128d63-e990-4d6e-a0f1-bd72ae66d9e3.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Ideal in principle, limited in practice: Shared decision-making in Chronic Kidney Disease Care in Urban South India","fulltext":[{"header":"Background","content":"\u003cp\u003eThe burden of chronic kidney disease (CKD) has emerged as a global public health challenge. The Global Burden of Disease (GBD) studies have shown that CKD was one of the leading causes of worldwide mortality, corresponding to 1.2\u0026nbsp;million deaths in 2017 alone(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Currently, about 10% of the general population is affected by CKD worldwide, amounting to more than 800\u0026nbsp;million individuals(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). It is estimated that CKD will become the fifth leading cause of premature mortality by 2040(\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). India – the focus of this study – has a substantial burden of CKD as well: a recent systematic review reported prevalence of CKD among general population as high as 16%(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Although precise prevalence data are unavailable, it is estimated that over 300\u0026nbsp;million individuals in the country are currently affected by CKD(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eChronic kidney disease (CKD) is a progressive condition characterized by the gradual loss of kidney function over time. In its most advanced form—kidney failure—renal replacement therapy becomes necessary, either in the form of dialysis or transplantation. There are two types of dialysis: hemodialysis, in which blood is filtered through an external machine via a central venous catheter or, preferably, a surgically created arteriovenous (AV) fistula; and peritoneal dialysis, which uses the body’s peritoneal membrane as an internal filter. AV fistulas are preferred for hemodialysis access because they last longer and have fewer complications, though they require 6–12 weeks to mature, during which temporary catheters are used. Haemodialysis is usually performed three times a week; each session typically takes three to four hours(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Peritoneal dialysis offers more flexibility—patients can perform treatment at home—but carries its own challenges, including infection risk and complex self-management(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). In India, hemodialysis is the predominant form of kidney replacement therapy, accounting for over 95% of patients receiving this treatment(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Although kidney transplantation offers the best long-term outcomes, it is uncommon in low- and middle-income countries due to limited transplant facilities, high costs, and concerns about post-surgical complications(\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). The average waiting time for a kidney transplant in India is 3–5 years (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e).\u003c/p\u003e\n\u003ch3\u003eDecision making among people with CKD\u003c/h3\u003e\n\u003cp\u003ePeople living with CKD face critical treatment decisions, considering the complexities of each option alongside financial implications, lifestyle adjustments, and the overall impact on their well-being. As the illness progresses, decision-making becomes even more challenging, as they have to manage comorbidities, respond to emergencies, and plan for end-of-life care (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). Patients must also weigh personal values, family responsibilities, and available resources, all of which significantly shape their health outcomes(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Understanding patients’ key decisions across their CKD journey—and the factors that shape those choices—can inform more responsive, person-centred care.\u003c/p\u003e\u003cp\u003eNumerous models and frameworks have been developed to understand decision-making in the context of chronic conditions. Among these, the Shared Decision-Making (SDM) model is a widely used approach that emphasizes collaboration between patients and healthcare providers to support informed, value-based choices (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). This decision making process involves sharing information, discussing available treatment options, and weighing the potential benefits and risks associated with each choice(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). While healthcare practitioners bring clinical expertise, SDM acknowledges that patients are experts in their own lives, ensuring that treatment plans align with their individual circumstances and goals(\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eSDM has been shown to significantly improve patient outcomes, satisfaction, and adherence to treatment plans, especially in the context of chronic conditions (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). It has also been reported that involving patients in their care decisions can mitigate the psychological burden of chronic conditions, reducing anxiety and enhancing a sense of empowerment (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). In the context of chronic conditions like CKD, where treatment options may be limited, costly, or associated with significant risks, SDM becomes particularly relevant. By engaging patients in discussions about the benefits, risks, and trade-offs of different treatment options, healthcare providers can help patients make decisions that are consistent with their values and preferences while also considering the practical realities of their circumstances(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Figure\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e depicts a shared decision framework for advanced kidney disease(\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eThe existing literature on decision-making among individuals with CKD has focused primarily on treatment modality choices in high-income settings. Little research has explored the broader decision-making processes and the factors influencing patient choices at different stages of illness, particularly in LMICs. Restricted healthcare access, inadequate health insurance coverage, financial constraints, and lower health literacy levels further complicate decision-making for individuals with CKD in these settings. Understanding how patients navigate these challenges is essential for developing more responsive, patient-centred models of care that address not only clinical needs but also the social, economic, and informational barriers that shape health-related decisions. To address this research gap, we conducted a prospective follow-up study in an urban setting in South India, mapping the illness trajectory and health-seeking behaviour of individuals diagnosed with chronic kidney failure. We interviewed both patients and family members to gain a holistic perspective on the decision-making process. Our objectives were to (a) identify the key decisions faced by patients immediately after diagnosis and (b) understand the factors influencing these decisions across individual, family, community, and health system levels. Drawing on existing models of Shared Decision-Making (SDM) in chronic care, we then explored the scope, feasibility, and relevance of SDM in this context, focusing on the conditions that enable or constrain its meaningful implementation and adoption in routine care.\u003c/p\u003e"},{"header":"Methods","content":"\u003ch2\u003eStudy setting\u003c/h2\u003e\u003cp\u003eThis study was conducted in Bangalore, the capital city of Karnataka state, in Southern India. The urban district of Bangalore covers an area of 2196 Sq. kms and has more than 9\u0026nbsp;million population. There are approximately 80–100 dialysis centres in Bangalore, both integrated within large hospitals and operating independently, which offer haemodialysis services for people with kidney failure.\u003c/p\u003e\u003ch3\u003eStudy design and sample selection\u003c/h3\u003e\u003cp\u003eWe employed a prospective qualitative design to follow up individuals diagnosed with kidney failure. A qualitative design deemed appropriate for this study as it enabled us capturing rich, in-depth narratives of treatment experiences and decision-making. Using purposive sampling, we recruited 12 patients—each diagnosed within the previous six months—from both private and government-run dialysis centres. The sample included men and women across a range of ages and care settings to ensure diverse perspectives. Family members were also invited to share their perspectives on treatment trajectories and decision-making; six who were present at the initial interviews consented to participate. Participants were enrolled between August and December 2021 and followed up until April 2023.\u003c/p\u003e\u003ch3\u003eData collection and analysis\u003c/h3\u003e\u003cp\u003eIn-depth interviews were conducted with persons with kidney failure and their family members present with them. Using a topic guide, the interviews focused on (a) Illness trajectory and care seeking till date, (b) key decisions since the diagnosis of kidney failure and (c) the factors which have influenced these decisions. Each interview took about 45–60 minutes. The interviews were conducted in the native spoken language Kannada, recorded, and later transcribed and translated into English. Subsequently, each participant was followed up every quarter through in-person visit, or when visits were not possible, by telephone interviews. Each participant was followed up at least four times during the study period. These follow ups were carried out to assess whether there have been any modifications in dialysis modality, facility, or any other personal and lifestyle related aspects and if so, to document such changes.\u003c/p\u003e\u003cp\u003eThe interview transcripts were imported into NVivo 12 for analysis. We conducted a thematic analysis, which involved systematically coding the data to identify patterns and recurring ideas. Initial coding was carried out by the first author and iteratively refined through discussions with the other three authors. Codes were developed inductively from the participants’ narratives and further refined through repeated readings of the transcripts. These codes were then clustered into broader themes that reflected the key issues surrounding the decision-making experiences shared by participants across the study period.\u003c/p\u003e\u003cp\u003eThe study was conducted by a trained qualitative researcher with prior experience in similar studies. The relationship with the data was critically examined through regular discussions with senior co-authors, during which emerging themes, interpretations, and analytical directions were collaboratively reviewed. These meetings were crucial in enhancing the reflexivity and analytical rigour of the study.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eA total of 12 individuals diagnosed with kidney failure were included in the study and followed up quarterly. Of these, six were undergoing dialysis in private centres, four in government centres, and two were not on dialysis. During the follow-up period, two participants died\u0026mdash;one was on dialysis and had registered for a transplant, while the other was not receiving dialysis. Hypertension and diabetes emerged as the primary risk factors for CKD among the respondents. The participant profiles are provided in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\" width=\"100%\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eParticipant profiles\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eParticipant profile\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAge group\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e30\u0026ndash;40 years\u003c/p\u003e\u003cp\u003e41\u0026ndash;50 years\u003c/p\u003e\u003cp\u003e51\u0026ndash;60 years\u003c/p\u003e\u003cp\u003e\u0026gt;\u0026thinsp;60 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e5\u003c/p\u003e\u003cp\u003e4\u003c/p\u003e\u003cp\u003e1\u003c/p\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e6\u003c/p\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEducation\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePrimary school\u003c/p\u003e\u003cp\u003eHigh school\u003c/p\u003e\u003cp\u003eGraduation\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e6\u003c/p\u003e\u003cp\u003e4\u003c/p\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMonthly family income in USD\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u0026lt;\u003cspan\u003e$\u003c/span\u003e180 (INR 15000)\u003c/p\u003e\u003cp\u003e\u003cspan\u003e$\u003c/span\u003e200\u0026ndash;375 (INR 16000\u0026ndash;30000)\u003c/p\u003e\u003cp\u003e\u0026gt;\u003cspan\u003e$\u003c/span\u003e375 (INR 30000)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e5\u003c/p\u003e\u003cp\u003e5\u003c/p\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRisk factors\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eUndetected hypertension\u003c/p\u003e\u003cp\u003eDiabetes\u003c/p\u003e\u003cp\u003eHypertension and diabetes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e8\u003c/p\u003e\u003cp\u003e2\u003c/p\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDialysis setting\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePrivate\u003c/p\u003e\u003cp\u003eGovernment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e6\u003c/p\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther details\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePeople not on dialysis\u003c/p\u003e\u003cp\u003ePersons enrolled for transplant\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e2\u003c/p\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eKey decisions faced by individuals with kidney failure\u003c/h2\u003e\u003cp\u003eWe found that the key decisions taken by people diagnosed with kidney failure were regarding (a) the treatment modality soon after the diagnosis, (b) treatment setting/centres, (c) other day-to-day decisions, such as diet, employment, living arrangements and decisions regarding long-term care planning.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eDiagnosis and decisions regarding treatment modality\u003c/h3\u003e\n\u003cp\u003eAt the time of initial interviews, all except two participants were started on haemodialysis. Most of them reported that they were caught by surprise at the hospital when they were told that their kidneys had failed, and that they needed to undergo dialysis immediately. Though they have had some symptoms such as headache, vomiting or occasional breathlessness prior to the diagnosis of kidney failure, they either ignored it or sought only symptomatic care at nearby clinics or nursing homes. Most respondents sought specialist care only when symptoms such as oedema or breathlessness were too severe to ignore, or when it affected their functional ability. Most of them were admitted to hospital emergency where they were started on haemodialysis as an emergency procedure. Due to symptom severity, participants were not able to decide for themselves, and the family members often gave their consent for catheterisation surgery and emergency dialysis. The following quotes illustrate how the respondents came to know about their diagnosis and the need for dialysis.\u003c/p\u003e\u003cp\u003e\u003cem\u003eI had high blood pressure, but I didn't know it. Then, I developed swelling in my feet. I couldn't sleep, and I wasn't able to walk properly. I coped like that for 4 to 5 months, but I felt something was wrong with me. Then my urinary bladder developed swelling, so I went to get myself checked and found out that my kidneys were not working. They said the only option was dialysis. (P1_41\u0026ndash;50 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eI didn\u0026rsquo;t have medical check-ups earlier because I had a healthy and strong body. So, I didn't feel the need for any check-ups. I used to get headaches and a vomiting sensation once in a while, which I thought were related to my eating habits. So, I was shocked when they suddenly told me that my kidneys had stopped working and I needed to start dialysis. (P12_41\u0026ndash;50 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eLater, when I wasn't feeling well, I went to (name) hospital, where they told me the medicine dosage was inadequate. They said I should have gone for regular check-ups. I didn't know this, and by then, my creatinine levels were very high, and they said I had to be on dialysis. (P4_41\u0026ndash;50 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eMany of them resorted to alternative therapies and herbal medicines once they were informed about their high creatinine levels in the hospitals. They were often advised by relatives and friends about these therapies, as an alternative to dialysis. Some of them even tried to continue these therapies along with dialysis, as they felt it would help in curing their condition.\u003c/p\u003e\u003cp\u003e\u003cem\u003eMy mother took\u003c/em\u003e (name of herbal drink) \u003cem\u003efor nearly a year. It put a high burden on her kidneys. It is a complete protein supplement, and it didn\u0026rsquo;t suit her. After about a year of using it, she suddenly developed fever and chills and was diagnosed with a urinary tract infection (UTI). Following the UTI, protein started leaking from her kidneys, which eventually led to kidney failure. (Family member_P6)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eAfter starting Ayurveda, I checked my creatinine level, and it had reduced by 1 or 2 points. Then I started feeling very weak and couldn't even walk... Although my creatinine levels initially decreased, I don't know what happened, suddenly it increased to 15 (mg/dL). It was decreasing for a few months, then suddenly it spiked, and I developed breathing difficulties. My condition became serious, I was admitted to the hospital, and they inserted a catheter. (P10_30\u0026ndash;40 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eThey bring this herbal juice door to door and sell it, and once I bought one bottle and started taking it in the morning and evening. They said it would normalize my blood sugar and creatinine levels. I took it for two weeks, and when I went for the next blood test, my creatinine levels had increased even more. My son scolded me for taking the juice, so I stopped using it. (P5_51\u0026ndash;60 years, male)\u003c/em\u003e\u003c/p\u003e\n\u003ch3\u003eDecisions about the place: fistula surgery and routine dialysis\u003c/h3\u003e\n\u003cp\u003eParticipants reported that once the diagnosis was confirmed, they were informed about the necessity of maintenance dialysis. Grown-up employed children were found to play a key role in choosing the dialysis centre for their ill parent. According to their financial ability, they weighed the options for maintenance dialysis and chose the most appropriate one. People who had insurance cover for their ill parent continued the maintenance dialysis from private centres and the ones who couldn't afford private facilities, transitioned to government-run or NGO-operated facilities that provided subsidies or lower rates. All respondents reported that they had their AV fistula surgery and started their dialysis in private dialysis centres.\u003c/p\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eOther decisions- diet/lifestyle modifications and advance care planning\u003c/h2\u003e\u003cp\u003ePeople on dialysis were faced with difficult treatment and lifestyle decisions on a day-to-day basis. Arranging finances for weekly dialysis and household expenses was often a challenge. Medicines and monthly blood tests added to their financial woes. One participant who had registered for transplant (who passed away during follow up) had to sell her house to arrange the necessary funding for transplant. Some participants receiving dialysis at private centres relied on government hospitals for erythropoietin injectables (for anaemia) and monthly blood tests. However, due to frequent stock outs of these injectables, they had to purchase them from private facilities at their own expense when necessary.\u003c/p\u003e\u003cp\u003e\u003cem\u003eIn (name) hospital, they have become smart; last two times when we went, they said it\u003c/em\u003e (erythropoietin) \u003cem\u003eis out of stock and asked us to buy from outside, it costs about 2500 rupees\u003c/em\u003e (USD 30) \u003cem\u003ejust for the injection. It is very difficult for us. We have decided to sell our house and use that money for the transplant (P2_30\u0026ndash;40 years, female)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eAll participants were unemployed at the time of interview. Two of them reported that they lost their jobs during COVID, and they are trying to find another job. Others reported that they found it difficult to manage the dialysis schedules while they were working, and they had to quit their job. All women respondents were housewives and reported that they were unable to do any household work due to their dialysis schedule and physical weakness.\u003c/p\u003e\u003cp\u003e\u003cem\u003eI tried to go for work and do dialysis. I had to finish eight-hour duty and then go for dialysis. After getting this illness, some days I won\u0026rsquo;t feel like eating anything. Then I was not able to do the work, I used to feel very weak. The old director was very nice and if he was there, I could have continued. The new management was very strict, so I quit (P9_30\u0026ndash;40 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e Most participants were found to be actively exploring different options for the required financial support for dialysis. Some of them reported of meeting with political and religious leaders to explore financial support.\u003c/p\u003e\u003cp\u003e\u003cem\u003eFrom church they give money for two dialysis every month. The remaining money I have to arrange. I have borrowed money from my friends, but they know I can\u0026rsquo;t give it back, since I stopped working. Sometimes when I don\u0026rsquo;t have money, I don\u0026rsquo;t pay. I pay next time for two dialysis, together. (P7_30\u0026ndash;40 years, male)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eFactors influencing the choice of treatment modality: hemodialysis vs. transplant\u003c/h2\u003e\u003cp\u003eWe found that haemodialysis was presented to most participants as the only lifesaving treatment option. Since many were caught unaware by the sudden diagnosis and progression to kidney failure, they had little time to process the information or consider alternative options, resulting in limited opportunities for informed decision-making. Most of the time, due to symptom severity, participants were not able to decide for themselves; rather, the family members had to give consent on their behalf for catheterisation surgery and emergency dialysis. Though most participants had learned about kidney transplantation from their peers, they did not have a favourable attitude towards it. Only one study participant had registered for transplant. Personal beliefs about the transplant and worries about the donor (in case of family members) prevented them from registering for transplant. Financial constraints were another major hurdle for transplant. Some of them reported that they were not willing to spend a lot of money for a procedure which may not succeed and could result in pain and suffering for their family members.\u003c/p\u003e\u003cp\u003e\u003cem\u003eNo, I haven't registered (for transplant) ...If a blood relative donates the kidney, it works well. But if we receive a kidney from other donors, it won't last long, and all the money we spend gets wasted. I saw someone at (name) hospital who had to undergo dialysis again after two years of transplantation. (P1_41\u0026ndash;50 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eI haven\u0026rsquo;t registered for a transplant. They considered my mother, and she was willing, but I declined. I don't want her to struggle without kidneys. Sometimes transplants fail; it's not always successful. Even after the surgery, we'd need to be extremely cautious. If I were to take her kidney and then engage in stupid things like drinking with friends, it wouldn't end well. I've seen many cases where transplants didn't work out, so we decided against it. As long as she's alive, let her live healthily. Why make her suffer too? (P9_30\u0026ndash;40 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eWhen I cannot have my original thing\u003c/em\u003e (kidney), \u003cem\u003eI don\u0026rsquo;t want to take it from others to survive. And another thing, I've heard that only 2 or 3 people have survived after transplant. In the dialysis centre where I go, many people died within 40 days of kidney transplantation. My colleague's wife passed away within two months of her kidney transplant. I feel it's better to stick with dialysis if it works. It's a simple process. I only must endure 5 minutes of discomfort from the needle prick. (P7_30\u0026ndash;40 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eTwo participants were not started on dialysis, as their families decided against it. One family member explained that he chose not to enrol his mother for dialysis because she was physically too weak to undergo the various tests and surgical procedures required before initiating haemodialysis. The other participant had undergone multiple surgeries to create a functioning fistula, but each attempt led to complications. After these repeated setbacks, the family decided not to proceed with haemodialysis.\u003c/p\u003e\u003cp\u003e\u003cem\u003eAlready my mother underwent three surgeries, every time, it (fistula) gets blocked, and they say put another one. She said it is enough. She is controlling her diet and water. We are planning to start her on Ayurveda treatment (Family member_P3)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eMy mother has asthma, high blood pressure and diabetes, already she is too weak. We don\u0026rsquo;t want to put her through surgeries, and then we don\u0026rsquo;t know if her body is able to bear it. We told this to the doctor, and he said it is up to us (Family member_P8)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eFactors influencing the choice of dialysis centres\u003c/h2\u003e\u003cp\u003eVarious factors influenced the participants\u0026rsquo; decisions regarding their choice of dialysis centres. The dialysis charges and their purchasing power were the main deciding factors for many respondents for choosing a dialysis centre. Only three respondents had any insurance coverage. Other important considerations were physical proximity to the dialysis centre and the availability of emergency services. There was a clear preference for hospitals over standalone dialysis centres, due to the range of services, including emergency admissions. Peer influence was a major factor influencing decisions related to fistula surgery and choosing the dialysis centres. The attitude of the healthcare providers and the perceived quality of care were other influencing factors in the choice of dialysis centre.\u003c/p\u003e\u003cp\u003e\u003cem\u003eFirst, I was going to (name) hospital, there they were charging 2500 rupees, then (name) hospital was nearer to my house, so I went there. Now I pay 1500 rupees here. The other hospital was costlier, and if my condition worsens during dialysis or later, they can\u0026rsquo;t admit there, as they did not have ICU. So, this hospital works for me. (P5_40\u0026ndash;50 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eMany people from Hulimavu and Gottigere prefer coming over to (hospital name) because they find it more comfortable here. They treat us very well here; I feel fortunate that it's nearby. My son drops me off, and once I begin dialysis, I inform him. He calculates the time and picks me up accordingly. It's very convenient.\u003c/em\u003e (P6_above 60 years, female)\u003c/p\u003e\u003cp\u003eAll participants had started dialysis from the private centres. Respondents recruited from government centres reported that they were unable to afford the costs at private facilities and therefore shifted to government-run centres, which offered dialysis at subsidized or lower rates.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003eFactors influencing decisions on lifestyle and long-term care planning\u003c/h2\u003e\u003cp\u003eParticipants shared that when they were faced with decisions regarding long term management of the condition, the key influencing factors were the available financial resources and family support. During the second quarter follow up, one participant shared that he has shifted to his hometown, a tier 2 city, to be able to afford dialysis expenses.\u003c/p\u003e\u003cp\u003e\u003cem\u003eWith the amount I spend on two dialysis sessions in Bangalore, I can afford three sessions here. Blood tests too are less expensive here. Considering the high cost of living in Bangalore, where even vegetables are pricey, staying here seems more financially viable. Moreover, I have people I can rely on for emergencies\u003c/em\u003e. \u003cem\u003e(P5_50\u0026ndash;60 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eFamily support emerged as the key influencing factor in decisions related to treatment and long-term care planning. Family members often extended the necessary material as well as emotional support; many participants were accompanied by their family members for dialysis. Two of them reported their wives taking up jobs to support their family and to be able to afford the dialysis expenses of their spouses. Grown up children too, were found to extend their support to their ill parents. They tried to bring their ill parents to Bangalore for financial as well as logistic reasons.\u003c/p\u003e\u003cp\u003e\u003cem\u003eOnce I became unwell, my son stopped going for studies, he said he will find a job to support our family. That time I felt bad about that. But he is now working, and his salary is the only income we have. (P12_41\u0026ndash;50 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eA participant undergoing maintenance dialysis revealed that he had to send his children to stay with his sister in another city due to the financial strain of covering their school fees along with his dialysis expenses.\u003c/p\u003e\u003cp\u003e\u003cem\u003eThis year, I sent my kids to stay with my sister, where they attend a government school with no fees. The school provides free meals, including eggs, so it is manageable. Here, I couldn\u0026rsquo;t send them because the school fees are very high. Until last year, I somehow managed despite the difficulty. But now it\u0026rsquo;s impossible, as a lot of money is needed for my dialysis and medications (P9_30\u0026ndash;40 years, male).\u003c/em\u003e\u003c/p\u003e\u003cp\u003eA few participants reported experiencing stigma from others, which they attributed to their altered appearance and the presence of a fistula in their arm, which was difficult to hide. As a result, they preferred to avoid going out or socializing.\u003c/p\u003e\u003cp\u003e\u003cem\u003eEven my relatives look at me differently. I don\u0026rsquo;t like to go anywhere because you have to explain your problem to everyone. Sometimes they won\u0026rsquo;t eat from the same plate and give you a separate plate and glass. Because of that, I don\u0026rsquo;t like to visit them (P10_30\u0026ndash;40 years, male).\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eYes, we should not develop mental problems. We have to be bold. Sometimes people won\u0026rsquo;t come near us, thinking it might spread to them. When they do come close and ask about my illness, I tell them there is nothing to be scared of, and it doesn\u0026rsquo;t spread (P12_41\u0026ndash;50 years, male).\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003eShared decision making: too idealistic?\u003c/h2\u003e\u003cp\u003eWe found that clinicians played a dominant role in decision-making, particularly in selecting the treatment modality. Haemodialysis was typically presented as the only life-saving treatment option, leaving little room for patients or families to consider alternatives or engage in shared decision-making at that stage. None of the study participants were educated about peritoneal dialysis nor was it offered as an option. Personal characteristics such as age and health status were considered by family members in choosing/rejecting haemodialysis as the appropriate intervention.\u003c/p\u003e\u003cp\u003eWhen it came to decisions regarding the location of fistula surgery or selection of a dialysis centre for long-term haemodialysis, the responsibility largely shifted to the earning family members. Families often spent significant amounts of money on initial consultations and fistula procedures, seeking second opinions from various hospitals within the city and even travelling to larger cities. Considerable time was spent confirming the diagnosis and determining where to undergo the fistula procedure and subsequently access dialysis services. Choices were often shaped by recommendations and experiences shared by others undergoing dialysis, as well as their families. In addition, many relied on internet searches to gather information about kidney disease and available treatment centres. The most important consideration in these decisions was the affordability of dialysis; in the absence of health insurance, the financial burden had to be borne entirely by the family. As a result, they selected facilities that fit within their available financial resources. Patients themselves were rarely involved in these choices and generally complied with the decisions made by healthcare providers or family members.\u003c/p\u003e\u003cp\u003e\u003cem\u003eYes, we got him admitted in (name) hospital, and they asked us to put in a fistula. Then we consulted with many doctors and even took him to\u003c/em\u003e a tertiary hospital \u003cem\u003eand consulted with Dr (name) who is from America. We even went up to Punjab for a specialist opinion. Within two months, we had to perform five catheterizations, and his creatinine levels remained at 19 or 20. (family member_P7)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eWe went to Mysore for the fistula surgery, they were ready to do it at\u003c/em\u003e (hospital name), \u003cem\u003ethen other patients told me not to do it, because many of them who did it from there developed infection, and they had to do it again. This doctor in Mysore was very good, so we took the address from the internet, and we went there for the surgery. (P9_30\u0026ndash;40 years, male)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eMy brother brought me to Bangalore for a check-up, and we visited (name) hospital where I underwent the fistula surgery. However, it swelled up, causing significant issues. Upon hearing about this centre from other patients, we researched online and decided to come here for dialysis. It's been good here. (P11_30\u0026ndash;40 years, female)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eThe figure below illustrates the key decisions encountered by people with kidney failure, factors influencing these decisions and the actors involved in decision making.\u003c/p\u003e\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study throws light on the critical decisions and their influencing factors faced by people with kidney failure in an urban setting within an LMIC context. Our findings indicate that clinicians presented haemodialysis as the sole life-saving treatment option; most participants were too ill and were advised emergency dialysis, and their family members felt pressured to take a decision immediately while the patient was admitted in the ICU. These findings are consistent with other studies conducted on CKD; Sheu et al found that many of their study participants were confronted with an urgent need to initiate haemodialysis when they were extremely ill(\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). Similarly, Winterbottom and colleagues found that respondents perceived their key decision as \u0026ldquo;dialysis versus no dialysis,\u0026rdquo; rather than choosing one dialysis modality over another (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe lack of awareness on peritoneal dialysis and reluctance to undergo among our study respondents suggest that the information they received about these treatment options were limited. Various studies have underscored the informational needs of people with CKD regarding the diagnosis, available therapies, and the respective advantages and disadvantages of these treatments(\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). These studies have highlighted the necessity for timely, comprehensive, and tailored education for individuals with CKD and their family members (\u003cspan additionalcitationids=\"CR31 CR32\" citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). Such individualized education can empower them to adopt effective self-management practices, fostering greater autonomy and improved health outcomes (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eFinancial resources emerged as the primary determinant influencing the treatment trajectory, decisions regarding treatment and long-term care planning of people diagnosed with kidney failure. The burden of out-of-pocket expenditure is a formidable barrier, impeding access to essential healthcare services in India, especially in the context of chronic conditions such as CKD (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Earlier studies too have reported that people with CKD face financial strain from diagnostic tests, medications, dialysis, or transplants, forcing many to skip dialysis sessions or discontinue treatment(\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eOur study found that peer influence is a major factor in shaping decisions taken by individuals with CKD. Participants were greatly moved by the experiences and views of fellow individuals with CKD, and it greatly influenced the way they viewed different treatment options and the quality of available services. A systematic review conducted by Morton and colleagues reported similar findings, indicating that people with CKD frequently identified with their peers' experiences, which prompted them to even opt out of certain kidney replacement therapies(\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e). Similarly, Elliot and colleagues discussed how the empathy and support received from peers helped people with CKD to navigate through the uncertain course of illness, assert more control over their lives and to create a sense of optimism (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe role of family in the context of chronic illnesses are well documented(\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e), (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). We found that the diagnosis of kidney failure and initiation of dialysis resulted in a notable alteration in family dynamics, and families tried to mobilize all available support networks to sustain their relatives\u0026rsquo; lives. This finding underscores the importance of incorporating family-centred approaches in the management of CKD. Recognizing and supporting families as integral parts of the care team\u0026mdash;and, if they wish, tailoring involvement to their preferred level\u0026mdash;can lead to more effective management strategies, improved patient outcomes, and enhanced overall well-being for individuals with CKD.(\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eOur study findings indicate that people with kidney failure were actively looking for a cure and that motivated them to seek alternative therapies before or along with allopathic treatment. Other studies have likewise reported a high usage of alternative therapies among people with chronic illnesses(\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e). A recent study on complementary and alternative medicine use among the chronically ill reported that respondents resorted to alternative therapies as a desperate attempt at pain relief or as a trial-and-error method to see if these treatments worked, often prompted by family members or significant others. (\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). However, in our study, none of the participants reported of any positive effects from alternative therapies. In fact, a few individuals mentioned experiencing adverse effects.\u003c/p\u003e\u003cp\u003eOur study findings demonstrate the limited scope of shared decision-making in current CKD care within the Indian context. Although SDM models emphasize collaborative dialogue between healthcare providers and patients, our study suggests that such interactions are constrained by a range of systemic and contextual factors. Financial considerations significantly influenced the feasibility of treatment options, compelling families to prioritize affordability over medical preference. In this context, the burden of decision-making often shifted away from collaborative discussion toward provider-led recommendations and caregiver-driven financial calculations. Additionally, peer influence emerged as a key determinant in shaping how patients understood and responded to their treatment choices\u0026mdash;yet this dynamic is often overlooked in conventional SDM models.\u003c/p\u003e\u003cp\u003eTo be meaningful in resource-constrained settings, SDM practices must move beyond the provider\u0026ndash;patient dynamic and include the broader ecosystem of decision-making\u0026mdash;encompassing financial limitations, familial roles, and the influence of peer experiences. Tailoring SDM to reflect these realities can support more informed, context-sensitive choices and promote equity in CKD care in such settings.\u003c/p\u003e\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\u003ch2\u003eStrengths and limitations of the study\u003c/h2\u003e\u003cp\u003eTo our knowledge, this is the first study to explore the factors affecting health decision making among individuals with CKD and the appropriateness of existing SDM frameworks in an LMIC context. However, it is not free from limitations. Our study participants were individuals recently diagnosed with kidney failure and undergoing short-term dialysis, which may limit the applicability of our results to this population. We only explored patient and family perspectives related to decision-making in CKD. It is important to also understand provider-level factors and other stakeholder perspectives to gain a comprehensive understanding of decision-making dynamics among people with CKD. Nevertheless, we believe this study may inspire future researchers in further exploration of the decision-making processes of people with CKD in different contexts.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eOur study is a pioneering work on the decision-making dynamics among individuals with CKD in India. Our findings reveal how out-of-pocket costs, peer influence, and family roles shape treatment and long-term care choices. These findings underscore the urgent need to: a) expand financial protection schemes to include CKD care; b) develop peer-support programmes to provide credible lived-experience guidance alongside clinical advice; c) adapt shared decision-making frameworks to incorporate socio-economic trade-offs, peer input, and family involvement; d) strengthen patient and community education on prevention and management of CKD; and e) regulate herbal products aggressively marketed in India that claim to cure diabetes, CKD, and other chronic illnesses. Further research is needed to understand the provider-level factors and other stakeholder perspectives influencing patient decision-making regarding CKD and its management.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eCKD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eChronic Kidney Disease\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eGBD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eGlobal burden of Disease\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eAV\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eArteriovenous\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eLMIC\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eLow-and Middle-Income Countries\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eSDM\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eShared Decision Making\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study protocol was approved by the Ethics Committee for the Social Sciences and Humanities of the University of Antwerp, Belgium (ref no: SHW_18_82). We sought permission from the dialysis centre authorities to meet with the study participants. Informed consent was taken, and confidentiality was maintained by removing all identifying details from the interview transcripts, and the transcripts were only handled by the first author.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTrial registration\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable since the study is not a clinical trial\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets for the current study are can be made available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eM.A. Elias conceptualized the study in consultation with W.V. Damme and E. Wouters. \u0026nbsp; \u0026nbsp; \u0026nbsp;M.A. Elias collected the data, conducted the initial analysis, and prepared the first draft of the manuscript. W.V. Damme and E. Wouters contributed to the study design, data analysis, and manuscript writing. G.M.V. Ku contributed to data analysis and manuscript writing. All authors participated in data analysis discussions, revised the manuscript, and approved the final draft.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of interest\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNone to declare\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAuthors have not received any funding for this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe thank Dr. Thriveni S. Beerenahalli, and Mr. Munegowda C.M. for their assistance in coordinating with dialysis centre authorities for data collection.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eBikbov B, Purcell CA, Levey AS, Smith M, Abdoli A, Abebe M, et al. Global, regional, and national burden of chronic kidney disease, 1990\u0026ndash;2017: a systematic analysis for the Global Burden of Disease Study 2017. The Lancet. 2020;395(10225):709\u0026ndash;33. \u003c/li\u003e\n\u003cli\u003eKovesdy CP. Epidemiology of chronic kidney disease: an update 2022. Kidney Int Suppl. 2022 Apr;12(1):7\u0026ndash;11. \u003c/li\u003e\n\u003cli\u003eForeman KJ, Marquez N, Dolgert A, Fukutaki K, Fullman N, McGaughey M, et al. Forecasting life expectancy, years of life lost, and all-cause and cause-specific mortality for 250 causes of death: reference and alternative scenarios for 2016\u0026ndash;40 for 195 countries and territories. 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Accessibility and quality of haemodialysis services in an urban setting in South India: a qualitative multiperspective study. BMJ Open. 2022 Feb;12(2). \u003c/li\u003e\n\u003cli\u003eMorton RL, Tong A, Howard K, Snelling P, Webster AC. The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ. 2010 Jan 19;340(jan19 2):c112\u0026ndash;c112. \u003c/li\u003e\n\u003cli\u003eElliott MJ, Love S, Fox DE, Verdin N, Donald M, Manns K, et al. \u0026lsquo;It\u0026rsquo;s the empathy\u0026rsquo;\u0026mdash;defining a role for peer support among people living with chronic kidney disease: a qualitative study. BMJ Open. 2022 May;12(5):e057518. \u003c/li\u003e\n\u003cli\u003eWhitehead L, Jacob E, Towell A, Abu‐qamar M, Cole‐Heath A. The role of the family in supporting the self‐management of chronic conditions: A qualitative systematic review. J Clin Nurs. 2018 Jan;27(1\u0026ndash;2):22\u0026ndash;30. \u003c/li\u003e\n\u003cli\u003eLee AA, Piette JD, Heisler M, Janevic MR, Langa KM, Rosland AM. Family members\u0026rsquo; experiences supporting adults with chronic illness: A national survey. Fam Syst Health. 2017 Dec;35(4):463\u0026ndash;73. \u003c/li\u003e\n\u003cli\u003eTavakoli N, Momeni MK, Sarani H, Bouya S, Imani JAR, Askari H. Effectiveness of Family-Centered Care Education in Care Knowledge of Caregivers of Hemodialysis Patients. Med-Surg Nurs J [Internet]. 2022 Aug 13 [cited 2024 Apr 8];11(1). Available from: https://brieflands.com/articles/msnj-130292.html\u003c/li\u003e\n\u003cli\u003eDeek H, Hamilton S, Brown N, Inglis SC, Digiacomo M, Newton PJ, et al. Family-centred approaches to healthcare interventions in chronic diseases in adults: a quantitative systematic review. J Adv Nurs. 2016;72(5):968\u0026ndash;79. \u003c/li\u003e\n\u003cli\u003eClarke TC. The Use of Complementary Health Approaches Among U.S. Adults with a Recent Cancer Diagnosis. J Altern Complement Med. 2018 Feb;24(2):139\u0026ndash;45. \u003c/li\u003e\n\u003cli\u003eChatterjee A. Why do chronic illness patients decide to use complementary and alternative medicine? A qualitative study. Complement Ther Clin Pract. 2021 May 1;43:101363. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Chronic Kidney Disease, Hemodialysis, shared decision making, treatment trajectory","lastPublishedDoi":"10.21203/rs.3.rs-6963320/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6963320/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjective\u003c/h2\u003e\u003cp\u003eTo examine the illness trajectory and decision-making among people with CKD, and to explore the scope of Shared Decision-Making (SDM) in an urban Indian context.\u003c/p\u003e\u003ch2\u003eSetting:\u003c/h2\u003e\u003cp\u003eThe study was conducted in Bangalore, the capital city of Karnataka state, in Southern India.\u003c/p\u003e\u003ch2\u003eParticipants:\u003c/h2\u003e\u003cp\u003eA total of 12 individuals diagnosed with kidney failure, and 6 family members from private and Government run dialysis centres participated in the study.\u003c/p\u003e\u003ch2\u003eDesign and methods:\u003c/h2\u003e\u003cp\u003eProspective qualitative research design to follow-up individuals who had been diagnosed with kidney failure. The participants were recruited from August to December 2021 and were followed up until April 2023. The data was collected through in-depth interviews and thematic analysis was conducted.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eWe found that clinicians played a dominant role in decision-making, particularly in selecting the treatment modality \u0026ndash; offering hemodialysis as the only lifesaving treatment. The key decisions encountered by people with kidney failure were regarding (a) the treatment modality soon after the diagnosis, (b) treatment setting/centres, and (c) other day-to-day decisions, such as diet, employment, living arrangements and long-term care planning. There was a lower level of awareness and uptake of peritoneal dialysis and kidney transplant. Financial implications and peer pressure emerged as the most important factors influencing patients\u0026rsquo; decisions regarding the treatment modality and specific dialysis setting and centre.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eOur findings indicate that current CKD care in India predominantly follows a traditional physician-centred approach. Improving patient education and actively involving patients in decisions about available treatment options is essential, considering their unique circumstances related to CKD. It is crucial to adapt the existing shared decision-making frameworks to incorporate key elements such as financial implications and peer support, as these significantly impact decision-making, especially in low- and middle-income (LMIC) settings.\u003c/p\u003e\u003ch2\u003eTrial registration\u003c/h2\u003e\u003cp\u003eNot applicable since the study is not a clinical trial\u003c/p\u003e","manuscriptTitle":"Ideal in principle, limited in practice: Shared decision-making in Chronic Kidney Disease Care in Urban South India","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-07-18 14:35:30","doi":"10.21203/rs.3.rs-6963320/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"751eee19-068c-4cac-8328-5aa0d64e3041","owner":[],"postedDate":"July 18th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-02-25T09:43:43+00:00","versionOfRecord":[],"versionCreatedAt":"2025-07-18 14:35:30","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6963320","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6963320","identity":"rs-6963320","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}