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Chronic kidney disease is associated with an increased risk of mortality, comorbidities and life-threatening complications. Invasive treatments including dialysis or transplantation, complex pharmacological therapies, dietary restrictions and the ongoing need to attend follow-up appointments can place a substantial treatment burden on patients and carers and impair quality of life. This highlights the need for care that is responsive to the needs of patients and involves them in decision-making to achieve the most appropriate healthcare outcomes. Shared decision-making and collaborative approaches to care require a deep awareness of the lived experiences and goals of patients. Qualitative research methods can provide insights into patients' experiences, values and priorities and inform practice and policy by uncovering their preferences for care. Qualitative methods are increasingly being used in standalone projects or in mixed methods studies (complementing quantitative studies) to make valuable contributions to patient-centred research. Patient-centred care, collaborations between patient and care provider, and shared decision-making that integrates with the patient's goals are central to quality healthcare. The efficacy of qualitative research lies in its ability to elicit patients' perspectives, values, priorities and goals that underpin shared decision making and care. This article discusses examples of how qualitative research has informed practice and policy in nephrology, provides a summary of qualitative research methods and outlines a guide on how to appraise, interpret and apply qualitative data., (© 2021 Asian Pacific Society of Nephrology.)

While patient-centered care is widely advocated in the management of rheumatic diseases, it can be challenging to implement, particularly for patients with complex systemic conditions. Patient-centered care involves identifying and integrating the patient's experiences, attitudes, and preferences in decision-making. Qualitative research is used to describe patient perspectives and priorities that may not always be expressed in clinical settings. Systematic reviews of qualitative studies can provide new and more comprehensive evidence of patients' beliefs and priorities across different populations and healthcare settings and are increasingly being reported across medical specialties, including rheumatology. In rheumatology, they have been used to examine topics including medication-taking and adherence, coping with systemic sclerosis and conservative management and exercise in osteoarthritis. By referencing recent examples of systematic qualitative reviews in the rheumatology literature, this article will outline the methodology and methods used, and provide an approach to guide the appraisal of reviews. We aim to give the reader a practical understanding of systematic reviews of qualitative literature and elucidate how knowledge gained from such reviews can be applied to improve the care of patients with rheumatic conditions., (© 2020 Asia Pacific League of Associations for Rheumatology and John Wiley & Sons Australia, Ltd.)

Summary: Many countries have suspended kidney transplantation programmes during the COVID‐19 pandemic because of concerns for patient safety and the shortage of healthcare resources. This study aimed to describe patient, family member and potential donor perspectives on the suspension and resumption of kidney transplant programmes due to COVID‐19. We conducted seven online focus groups involving 31 adult kidney transplant candidates (n = 22), caregivers (n = 4) and potential donors (n = 5). Transcripts were analysed thematically. We identified five themes: cascading disappointments and devastation (with subthemes of shattering hope, succumbing to defeat, regret and guilt); helplessness and vulnerability (fear of declining health, confronted by the threat of and change in dialysis, disconnected from health care, susceptibility to infective complications); stress from uncertainty (confusion from conflicting information, unable to forward plan), exacerbating burdens (incurring extra financial costs, intensifying caregiver responsibilities), and sustaining health through the delay (protecting eligibility, relying on social support, adapting to emerging modalities of care). During the suspension of kidney transplantation programmes, patients felt medically vulnerable because of declining health, susceptibility to infection and reduced access to care. There is a need to address health vulnerabilities, disappointment, uncertainty and additional burdens arising from the suspension of kidney transplantation programmes. [ABSTRACT FROM AUTHOR]

Rationale and Objective: Sleep problems affect more than half of patients receiving dialysis and are associated with increased risk of mortality, cardiovascular events, depression and impaired functioning and quality of life. Symptoms such as fatigue and exhaustion may be attributed to sleep problems or sleep disorders, as well as the burden of kidney disease and treatment. This study aims to describe the patient perspectives on the reasons, impact and management of sleep problems in dialysis.Study Design: Systematic review and thematic synthesis of qualitative studies that report patient experience and perspectives on sleep in dialysis.Setting and Population: Patients receiving dialysis.Search Strategy and Sources: MEDLINE, Embase, PsycINFO, CINAHL, reference lists and PhD dissertations were searched from inception to August 2019.Data Extraction: All text from the results/conclusion of the primary studies.Analytical Approach: Thematic synthesis.Results: We included 48 studies involving 1156 participants from 16 countries. We identified six themes: dominating demands of treatment (with subthemes of: demanding and relentless schedule, regret for wasted time); scheduling and control (managing sleep routines, napping and nocturnal sleep disruption, meditative aids); disruptions due to dialysis (unsettled sleep, hypervigilance and worry); symptoms depriving sleep (difficulty falling asleep, constant waking); overwhelmed and without choice (futility of sleep, uncontrollable exhaustion, restlessness is irrepressible); and as a coping mechanism (avoiding anxiety, alleviating symptoms, combating boredom).Limitations: Most studies were conducted in high-income, English-speaking countries.Conclusion: The treatment and symptom burden of dialysis disrupts and deprives patients of sleep, which leads to overwhelming and uncontrollable exhaustion. Better management of symptoms and effective strategies to manage sleep routines may improve sleep quality for better overall health in patients receiving dialysis. [ABSTRACT FROM AUTHOR]

Abstract: Pain is a severe and common symptom in patients receiving dialysis but remains inadequately managed in clinical practice. Understanding patient experiences of pain can inform strategies to address this patient-important symptom. We aimed to describe patients' perspectives on causes, experiences, and impacts of dialysis-associated pain. MEDLINE, Embase, PsycINFO, and CINAHL were searched to August 2019 for all qualitative studies that described the perspectives of pain in adults aged 18 years or older receiving dialysis. Findings from the primary studies were analyzed using thematic synthesis. We included 60 studies across 14 countries involving 1343 participants (1215 receiving hemodialysis and 128 receiving peritoneal dialysis), and identified 6 themes: gripped by an all-consuming agony (draining cognitive capacity, exacerbating other symptoms); suffering in silence (surrendering to the inevitable, ignored or dismissed, hiding symptoms to protect others); provoking fear of treatment (resistance to cannulation, avoiding dialysis, anxious from witnessing other patients in pain); preventing life participation (preventing fulfilment of valued roles, depleting the will to live); coping aided by connection with others (shared understanding among patients, comforted and supported by others); and developing awareness, assertiveness, and self-reliance (procedural vigilance, finding strategies to minimize pain, bodily understanding and knowing thresholds, positive thinking). Struggling with pain in dialysis involved a progression of agony, fear, avoidance, and despair. However, support from others and self-management strategies were used to cope with pain. Strategies to empower patients to report and minimize pain and its consequences in dialysis are needed. [ABSTRACT FROM AUTHOR]