Palliative care integration in advanced chronic kidney disease: a qualitative systematic review and thematic synthesis of patient and caregiver lived experiences, challenges, and perceived supportive strategies

¹Department of General Nursing, Jomo Kenyatta University of Agriculture and Technology, Nairobi, Kenya, ²Health Systems Research Group, Kemri-Wellcome Trust, Nairobi, Kenya, ³Living Goods, Nairobi, Kenya

^&Corresponding author
Jostine Ndunge Mutinda, Department of General Nursing, Jomo Kenyatta University of Agriculture and Technology, Nairobi, Kenya

Introduction    

Chronic kidney disease (CKD) affects more than 850 million individuals worldwide and is among the fastest-growing causes of mortality globally [1]. As populations age and risk factors like diabetes and hypertension proliferate, the prevalence of advanced CKD (stages 4-5) continues to rise, particularly in low- and middle-income countries where access to renal replacement therapy is limited [2]. Patients with advanced CKD endure a symptom burden comparable to that seen in advanced cancer, including fatigue, pain, pruritus, dyspnoea, nausea, and sleep disturbances, alongside reduced life expectancy and high rates of psychological distress such as depression and anxiety [3,4]. Renal replacement therapies like haemodialysis, peritoneal dialysis, and transplantation extend survival but do not always restore quality of life, especially among older adults or those with multiple comorbidities [5]. Dialysis, in particular, imposes significant lifestyle restrictions, including rigid schedules, vascular access complications, and financial strain, leading to high rates of treatment discontinuation [6,7]. Conservative (non-dialytic) management offers an alternative focused on symptom control and quality of life but is underutilised due to clinician bias and patient misconceptions [8].

The World Health Organization and international nephrology societies have endorsed integrating palliative (or "kidney supportive") care alongside disease-modifying treatments from the time advanced CKD is diagnosed, irrespective of age or prognosis [9,10]. Palliative care emphasizes holistic relief of physical, psychological, social, and spiritual suffering through early identification, impeccable assessment, and multidisciplinary intervention [11] yet, implementation lags with referrals often occurring only in the final weeks of life, missing opportunities to mitigate suffering earlier in the trajectory [12,13]. This gap is exacerbated in resource-limited settings, where palliative care infrastructure is nascent. Qualitative research provides irreplaceable insight into the subjective realities of illness such as the emotional turmoil, relational dynamics, and contextual nuances that quantitative metrics overlook. Over the past decade, numerous primary qualitative studies have documented the experiences of patients with advanced CKD and their caregivers, yet no systematic review has synthesized this evidence with a specific lens on palliative-care needs, challenges, and strategies. Such a synthesis is timely and essential to inform service redesign and policy.

Review questions: this review addressed three questions: i) What are the lived experiences and challenges of adults living with advanced chronic kidney disease? ii) What are the lived experiences and challenges of informal caregivers of people with advanced Chronic Kidney Disease? iii) Which palliative-care approaches and strategies do patients and caregivers perceive as helpful or desirable?

Methods     

Design and reporting standards: this qualitative systematic review and thematic synthesis were conducted and reported in accordance with the Preferred yeporting items for systematic reviews and meta-analyses [14,15] statement and the Enhancing transparency in reporting the synthesis of qualitative research [ENTREQ] framework.

Eligibility criteria: studies done using qualitative methods (or mixed-methods designs with a substantive, extractable qualitative component) to explore the lived experiences, challenges, or perceptions of palliative or supportive care among adults aged 18 years and above, with advanced chronic kidney disease (stage 4-5) including those receiving haemodialysis, peritoneal dialysis, conservative management, or deemed ineligible for renal transplant and/or their informal (unpaid) caregivers. The Spider tool guided criteria formulation as shown in Table 1. Exclusions comprised quantitative-only studies, paediatric or acute kidney injury populations, editorials, conference abstracts, theses, and studies focused exclusively on advance care planning without broader palliative-care elements.

Information sources and search strategy: four electronic databases were searched from inception to 05 November 2025: MEDLINE (Ovid), PubMed, CINAHL Complete [Elton B. Stephens Company -EBSCO], and Google Scholar (first 200 results per query). The search strategy combined controlled vocabulary (MeSH/CINAHL headings) and free-text terms for; i) chronic kidney disease; ii) palliative/supportive care; iii) qualitative methodology, and iv) patients/caregivers. No language limits were applied during searching; non-English full texts were excluded at the full-text stage. Forward and backward citation searching of included studies and key reviews was performed using Google Scholar. The complete, reproducible search strategies, including all terms and Boolean operators, are provided under 3.1. The initial search was conducted on 30 June 2023 and updated on 05 November 2025; no new eligible studies were identified in the update.

Study selection: all records were imported into DistillerSR systematic review software. Duplicates were removed automatically and verified manually (n=104 duplicates). Three reviewers: Jostine Ndunge Mutinda (JNM) and Jackson Chakaya (JC) and Eric Yegon (EY) independently screened titles and abstracts against the pre-defined criteria. Full-text articles of potentially relevant records (n=87) were retrieved and assessed independently by the same reviewers. Disagreements at either stage were resolved through discussion until 100% consensus was achieved. Reasons for exclusion at full-text stage were documented and are displayed in the PRISMA 2020 flow diagram (Figure 1). Inter-rater agreement was excellent [Cohen's κ=0.89].

Data extraction and management: a standardised, piloted extraction form captured: i) Bibliographic and methodological details; ii) setting and participant characteristics (age, gender, CKD stage, treatment modality, caregiver relationship); iii) all first-order data (direct participant quotations) and second-order constructs (author interpretations) relevant to the review questions. The reviewers independently extracted data from the first five studies; subsequent extraction was performed by EY and checked by JNM and JC. All text labelled as “results” or “findings” in the primary studies was imported verbatim into NVivo 14 to ensure comprehensive capture and facilitate line-by-line coding.

Quality appraisal: methodological quality was assessed the reviewer Eric Yegon using the 10-item critical appraisal skills programme (CASP) Qualitative Checklist - 2018 [16]. Each item was scored “Yes” (1 point), “Partly/Can´t tell” (0.5 points), or “No” (0 points); total scores ranged 0-10. Studies scoring 8-10 were classified high quality, 6-7 moderate, and ≤5 low. Discrepancies were resolved through discussion. No studies were excluded on quality grounds, but sensitivity analysis examined the influence of lower-scoring studies.

Synthesis methods:thematic synthesis was undertaken in three stages following Thomas and Harden 2008 [17].

Line-by-line coding: all extracted findings and participant quotations were coded inductively and freely by JNM. Codes remained close to the original data (e.g., “dialysis controls my life,” “caregiver feels invisible”).

Development of descriptive themes: similar codes were organized into a hierarchical structure that closely reflected the content of the primary studies.

Generation of analytic themes: the reviewers went beyond the primary studies to generate new interpretive constructs that directly addressed the review questions and offered implications for policy and practice. Throughout, regular team meetings, memo-writing, and peer debriefing enhanced credibility and confirmability. The synthesis was performed in NVivo 14.

Reflexivity and rigour: Jostine Ndunge Mutinda is a specialist in critical care (which encompasses renal nursing) while JC is an expert in renal nursing with over a decade of clinical experience in Kenyan dialysis units and has witnessed marked inequities in access to supportive care for CKD patients in sub-Saharan Africa. Jackson Chakaya is also a non communicable disease researcher with extensive experience in chronic illness trajectories, health systems management, quality management systems and extensive qualitative research experience. Eric Yegon is a senior research and evaluation advisor (Research, monitoring andevaluation). The three authors entered the review with a prior belief that palliative-care integration is both feasible and necessary in advanced CKD. These assumptions were explicitly acknowledged, documented in reflexive memos, and actively bracketed during analysis through constant comparison and team challenge. A clear audit trail from raw data extracts to final themes was maintained in NVivo.

Patient and public involvement: patients or the public were not directly involved in the design or conduct of this secondary synthesis. Dissemination plans include sharing plain-language summaries with Kenya Hospice and Palliative care association, and East Africa Kidney Institute.

Results     

Study selection and full electronic search strategies (last run 05 November 2025): from 1,238 records identified across four databases [MEDLINE, PubMed, Complete CINAHL Complete, Google Scholar] on 05 November 2025, 1,134 remained after duplicate removal. Title/abstract screening excluded 1,047 records, primarily for being quantitative (n=612), wrong population (n=298), or lacking a palliative/supportive care focus (n=137). Of the 87 full-text articles assessed, 70 were excluded: quantitative only (n=42), paediatric or acute kidney injury (n=11), no substantive palliative element (n=9), duplicate data (n=5), and non-English full text unavailable (n=3). Seventeen studies met all inclusion criteria and were included as shown in PRISMA figure. Results of the full electronic selection are shown in Annex 1.

Characteristics of included studies: the 17 studies were published between 2013 and 2023 and originated from ten countries: United Kingdom (n=3), Ireland (n=2), Australia (n=2), Malaysia (n=1), Canada (n=1), Portugal (n=1), Switzerland (n=1), USA (n=2), Ghana (n=1), Ethiopia (n=1), India (n=1), Iran (n=1), Saudi Arabia (n=1). Data collection methods varied to include use of: individual semi-structured interviews (n=14), focused group discussions (n=3), online forum posts (n=1). Analysis adopted different methods to include: thematic analysis (n=10), interpretative phenomenological analysis (n=4), grounded theory (n=2), framework analysis (n=1), conventional content analysis (n=1). Total participants: 378 (256 patients, 122 caregivers). Patient mean age ranged 48-68 years across studies (overall age ~52 years); 58 % of the were male. Caregivers were predominantly spouses (52 %) or adult children (38 %), mean age being 48 years. Participants were in stage 4- 5 of CKD. Treatment interventions included: those on haemodialysis (12 studies), conservative/kidney supportive care (4 studies), transplant-ineligible (2 studies), mixed interventions (3 studies). Full characteristics of the selected studies are presented in Table 2.

Quality appraisal: using the 10-item CASP qualitative checklist, all 17 studies were rated high quality (mean 9.56/10, range 8.5-10). Fifteen studies scored 9.5-10; two scored 8.5 owing to limited reporting of researcher reflexivity and ethical considerations for caregiver participants. No study scored below 8. Sensitivity analysis excluding the two lower-scoring studies produced no change in analytic themes. Detailed appraisal in Table 3.

Thematic synthesis: three analytic themes with twelve sub-themes were derived inductively from 1,247 initial codes, 742 descriptive findings, and 42 high-impact participant quotations.

Theme 1: (contributed to by 16/17 studies, 94 % of the evidence base): participants described advanced CKD as an existential assault that progressively dismantled identity, autonomy, and hope. Dialysis, while life-sustaining, was frequently experienced as life-diminishing.

Sub- themes

Hopelessness about transplantation or prolonged survival: (12/17 studies): prolonged waiting lists, repeated medical disqualifications, and awareness of poor prognosis generated profound despair. A heamodialysis patient said “I get depressed… I think there´s no hope for me getting a kidney transplant because there are so many people on the waiting list… Is my day ever going to come?” [18]. Similarly, a transplant-ineligible patient from Ireland said “I´ve been to the transplant unit twice… the medical team say I´m overweight… it´s impossible to get the weight down.” [18]. Another patient from Ethiopia lamented that “I feel hopeless… I know I will die soon.” [19].

Life ruled by dialysis schedules: (14/17 studies): the rigid thrice-weekly regimen became the organizing principle of existence. Patient from a study in Ghana commented that “Your life is ruled by the three appointments per week… Even if I´ve got another appointment anywhere, it can´t be done on a Monday, Wednesday, or Friday.” [18]. Similarly, a patient in the same article and another one from Saudi Arabia said “I spent an hour and 20 minutes sitting on a chair in the corridor… I was getting fed up [18, 20].

Unrelenting physical and emotional symptom burden (16/18 studies): symptoms were relentless, cumulative, and often refractory. “Pain can go away… but this (laying hand to chest)… this pain does not disappear.” said a patient on conservative management [21]. Another patient from Portugal on conservative management said “I just hope I can recover, but I know I can recover for a short period only. Another one from Malaysia said “I will still suffer… pain, shortness of breath, easily tired, body ache, and itchiness.” [22]. Similar, sentiments are reported by the patient from Ireland who said “The fatigue is killing me… I sleep all day and still feel exhausted ” [4].

Social isolation and perceived burden on others (11/17 studies): patients withdrew to spare loved ones as reported by a patient from Ghana who said. “They are fed up with me… they are tired of following me here and there.” [23]. Another one from Malaysia said “But the trouble is my wife has to be the sole breadwinner… If I ask her to do a lot of work, I´m afraid she might collapse.” [21]. Similar sentiments were expressed by a patient in the UK who said “When you come home you´re very much left to your own devices… I feel as though I´m being provided with a limited service ” [24].

Theme 2: the invisible burden of caregiving (15/17 studies, 88%): caregivers endured a parallel, largely unacknowledged trajectory of sacrifice.

Physical and emotional exhaustion (13/17 studies): a caregiver from India said “I get so tired of the care of my brother that I feel like I am ill myself” [25]. Disturbed sleep pattern due to patient care was making them physically tired, and they were getting ill themselves as the caregiver from the Ghana report “She has never been well… It is very frustrating” [23].

Financial toxicity and neglected family responsibilities (10/17 studies): “I am not having enough time to take care of my family responsibilities as I am always busy providing care to my husband” said a caregiver in the India study [25]. Another patient in the same article [25], said “I am finding difficulty in getting an alliance for marriage as I am burdened with father´s care.”

Social isolation and loss of personal identity (9/17 studies): a caregiver is quoted saying “Since she has had the permacath, she doesn´t like to join social gatherings…” [2].

Spiritual and existential distress (8/17 studies): some caregivers reported “I can´t believe in God anymore after what has happened to my father, as he was a virtuous and hardworking person with no harmful habits.” [25]. Similar sentiments are reported by a caregiver in the Ghanaian study who said “If we know the person will die eventually… palliative care should be an option ” [23].

Theme 3: elements of desired palliative and supportive care (14/17 studies, 82 %): participants articulated a strikingly consistent vision for humane, integrated care.

Early, honest, compassionate communication (14/17 studies): “All I could ask is that somebody would listen… a two-way street.” lamented a patient in UK article [24]; similar sentiments by another patient in the same article said “Sometimes I don´t ask, because it makes you worry, but then you still worry if you don´t know.” [24]. And another patient in Portugal expressed fear of disconnected communication by saying “Their faces say another… I realize that there is something wrong” [21].

Flexible, preferably home-based care delivery (11/17 studies): “Home is cozy… no rules… I feel free… I can be with my loved ones [21]. In the same article, expectedly, a patient expressed growing concern of hospital environments by saying “Sometimes I want to rest but I can´t. There is always someone who comes to the bell… a machine alarm.” [21]. Interestingly, a patient from the Ghana article showed optimism on palliative care by stating that “I will opt for palliative care… so that I will not suffer but die peacefully” [23].

Psychosocial and spiritual support for patient and caregiver (12/17 studies): the need for psychological and spiritual support cannot be downplayed. Many patients acknowledge the role of these support in palliative care. A patient in a US article was quoted saying “Nurses used to sit with me… listen to problems, about my health and what was going on ” [26]. And another one reported in the same article said “We can each maximize our own situations… a community of wonderful, compassionate people” [26].

Coordinated, continuous, multidisciplinary care (10/17 studies): the role of coordinated multidisciplinary care is regarded highly by a number of patients and caregivers as reported by patients in the UK article who said “You feel more relaxed, knowing there´s always somebody there.” [24] and another who said “Gentle, and a kind of personal approach.”

Discussion     

Principal findings: this is the first qualitative systematic review to focus explicitly on palliative-care needs, challenges, and preferred models of care in advanced chronic kidney disease (CKD). Synthesizing the lived experiences of 256 patients and 122 informal caregivers across ten countries, we identified three overarching analytic themes: i) living with pervasive uncertainty and erosion of self, ii) the invisible burden of caregiving, and iii) clear, strongly articulated elements of desired palliative and supportive care. Patients described a trajectory of cumulative loss to include loss of bodily integrity, autonomy, future plans, social roles, and hope, often exacerbated rather than alleviated by renal replacement therapy. Dialysis, intended as life-sustaining, was frequently experienced as life-constraining, with its inflexible schedule “ruling” existence and unrelenting symptoms eroding daily function. Caregivers endured a parallel, largely unacknowledged burden characterised by physical exhaustion, financial toxicity, social withdrawal, and, for some, spiritual crisis. Yet, amid profound suffering, participants consistently articulated a coherent vision for better care: early and honest communication, flexible (preferably home-based) care delivery models, psychosocial and spiritual support for both patient and caregiver, and coordinated multidisciplinary input that transcends the biomedical focus of current renal services.

Strengths and limitations: this review has several methodological strengths. Duplicate independent screening, data extraction, and quality appraisal by three reviewers, combined with a comprehensive search across four databases and forward/backward citation tracking, minimised selection bias. Use of the CASP qualitative checklist and achievement of high mean quality scores (9.56/10) enhances confidence in the robustness of primary data. The inclusion of studies from low-, middle-, and high-income settings (Malaysia, Ghana, Ethiopia, India, Pakistan, Saudi Arabia, Australia, Canada, UK, Switzerland, Portugal, USA) increases transferability beyond Western contexts-a notable advance on previous CKD qualitative syntheses that were predominantly Euro-American. Thematic synthesis, conducted rigorously in NVivo 14 and regular team debriefing, allowed the generation of analytic themes that go beyond simple aggregation to offer new interpretive insights directly relevant to service redesign. Limitations must also be acknowledged. Restriction to English-language publications may have excluded relevant non-English studies from francophone Africa, Latin America, or East Asia. Although we included several LMIC studies, representation remains skewed toward urban hospital-based haemodialysis populations; experiences of rural patients or those receiving peritoneal dialysis or conservative management in resource-poor settings are likely to be under-represented. Heterogeneity in CKD stage, treatment modality, and cultural context precluded formal subgroup analysis, though thematic saturation was achieved across these dimensions. Finally, as with all qualitative syntheses, our findings reflect the interpretations of primary study authors as well as participants; direct patient involvement in the review process could have added further depth.

Comparison with existing literature: our findings align with, but substantially extend, quantitative evidence demonstrating high symptom burden (70-90 % prevalence of pain, fatigue, pruritus, and restlessness), depression (20-50 %), and caregiver strain in advanced CKD [27]. Where surveys capture prevalence, qualitative data illuminate the lived meaning: fatigue not merely as “tiredness” but as an existential weight that extinguishes social participation; pain not only physical but an enduring “pain in the soul” that analgesics cannot touch. The metaphor of dialysis as “ruler of life” echoes European studies of treatment dissatisfaction [28], yet contrasts sharply with reports from Pakistan, where self-care education appears to foster greater acceptance [29]. Such contradictions highlight the critical role of cultural and health-system context in shaping experience. Caregiver burden has been quantified elsewhere [30], but our synthesis reveals its multidimensional and often invisible nature: caregivers feel “ill themselves,” lose employment and marital prospects, and experience spiritual distress that renal teams rarely acknowledge. This mirrors findings in cancer caregiving yet appears amplified in CKD by the indefinite trajectory and perceived futility of ongoing dialysis among some families. Perhaps the most striking finding is the consistency with which participants - across continents and economic settings-desired early, integrated, flexible, and ideally home-delivered palliative care. This strongly corroborates emerging pilot data from kidney supportive care programmes in Australia, Canada, and the UK, where home-based multidisciplinary intervention reduced hospitalizations and improved quality of life [31]. The repeated preference for the term “supportive care” over “palliative care” [32] reinforces calls to rebrand services in order to avoid the widespread misperception that palliative care equals end-of-life care only.

Implications for clinical practice: the following recommendations would be of great improvement to palliative care and generally lead to improved quality of life: i) Targeted palliative-care assessment at CKD stage 4 (eGFR 30 mL/min/1.73m²) or earlier in the presence of refractory symptoms or frailty, rather than waiting for dialysis withdrawal or terminal phase as highlighted in the article by Romano [7]. ii) Renal multidisciplinary teams require primary-level palliative-care training (symptom assessment, opioid prescribing in renal impairment, advanced care planning conversations) with rapid referral pathways to specialist palliative care when needs exceed renal expertise [32]. iii) Home-based or community-delivered models should be prioritized. Emerging evidence from Low- and Middle-Income Countries (LMICs) suggests task-sharing with trained community health workers is feasible and acceptable [33]. iv) Caregiver assessment must become routine, ideally using validated tools, while respite services or peer-support programmes should be offered proactively. v) Honest, compassionate communication about prognosis, treatment burden, and conservative care options should be normalized early, using decision aids co-designed with patients and families. vi) There is a need to create a better understanding of the importance placed on perceived control and anticipated dependency (due to symptom burden) on the part of the patient [34].

Implications for health policy and service commissioning: current reimbursement models that incentivize dialysis over comprehensive conservative or supportive care perpetuate inequity. The Government should fund integrated “kidney supportive care” pathways that include home visits, telehealth review, telephone support, and bereavement follow-up. In low-resource settings, integrating palliative care into existing HIV or non-communicable disease programmes may offer a pragmatic starting point.

Implications for future research: i) Effectiveness trials of integrated kidney palliative-care models (cluster-randomized or stepped-wedge designs) with patient-centred outcomes (quality of life, symptom burden, caregiver strain, health-care utilization). ii) Economic evaluations, particularly in low- and middle-income countries, to establish the cost-effectiveness and affordability of early palliative-care integration alongside renal replacement therapy or conservative management. iii) Qualitative exploration of cultural and religious influences on the acceptability of conservative management, advance care planning, and preferred place of care/death in under-represented regions (sub-Saharan Africa, South Asia, Latin America, Middle East). iv) Development and validation of a CKD-specific caregiver burden instrument that captures the unique financial, spiritual, and existential dimensions identified in this review. v) Application of Grade-CERQual to assess confidence in each review finding, plus longitudinal qualitative studies that track how patient and caregiver needs and preferences evolve across the illness trajectory (pre-dialysis→ dialysis initiation→ withdrawal → end-of-life).

Conclusion     

From the findings of this research it is known that: i) Adults with advanced CKD and their caregivers endure profound multidimensional suffering that current renal services which are oriented toward dialysis and transplantation frequently fail to address; ii) Early integration of flexible, ideally home-delivered, palliative care emerges not as an optional extra but as a patient- and caregiver-centred imperative.

Competing interests     

The authors declare no competing interests.

Authors' contributions     

Jostine Ndunge Mutinda: principal project leader, corresponding author, conceived study, participated in design and development of the research article, read and approved the final manuscript, submitted the manuscript to the journal. Jackson Chakaya: participated in design and development of the research article, helped to draft manuscript, read and approved the final manuscript. Eric Kiprotich Yegon: participated in design and development of the research article, helped to draft manuscript, read and approved the final manuscript. All the authors have read and agreed to the final manuscript.

Tables and figure     

Table 1: spider eligibility criteria used to guide the inclusion and exclusion of studies for a qualitative systematic review and thematic synthesis on palliative care integration in advanced chronic kidney disease (CKD), based on peer-reviewed, English-language qualitative and mixed-methods studies published 01 January 2013 -05 November 2025, involving adults aged ≤18 years with CKD stage 4-5 and/or their informal caregivers

Table 2: characteristics of the 17 studies included in a qualitative systematic review and thematic synthesis on palliative care integration in advanced chronic kidney disease (CKD), published between 2013 and 2025 and originating from ten countries across Africa, Asia, Europe, North America, and Oceania, involving a total of 378 participants (256 patients, 122 informal caregivers) with CKD stage 4-5

Table 3: methodological quality appraisal of the 17 studies included in a qualitative systematic review on palliative care integration in advanced chronic kidney disease (CKD), assessed using the 10-item critical appraisal skills programme (CASP) qualitative checklist (2018)

Figure 1: prisma 2020 flow diagram illustrating the study selection process for a qualitative systematic review and thematic synthesis on palliative care integration in advanced chronic kidney disease (CKD), conducted across four electronic databases (PubMed/Medline, Cinahl complete, Medline [Ovid], and Google Scholar), searched from inception to 05 November 2025

Annex     

Annex 1: supplementary materials (PDF 314KB)

References