Challenges encountered by patients with end‐stage kidney disease in accessing symptom management services: A narrative inquiry

Abstract

Aim To understand the storied experiences of accessing symptom management services of patients with end‐stage kidney disease (ESKD) who are receiving maintenance dialysis. Design Narrative inquiry. Methods Ten patients with ESKD who were receiving dialysis were recruited at two regional hospitals in Hong Kong and interviewed three times each between July 2017–July 2018 to capture their narratives. The data were analysed using the narrative inquiry approach from the perspective of Levesque's framework of access to care. Results Five themes emerged from the participants’ narratives. The first theme illustrated access to care as a process by which symptom management needs were met. However, clinicians occasionally identified patients based on their diseases instead of their needs and this process was affected differently by interpersonal and system factors. The themes ‘building trust’ and ‘facilitating communication’ described interpersonal factors that were essential to maintaining a constructive patient–clinician partnership. The themes ‘balancing efficiency’ and ‘navigating fragmented system’ described system‐related factors. Conclusions This study identified the factors that influenced the delivery and/or reception of symptom management services for patients with ESKD who were receiving dialysis. The results suggest that healthcare services should be streamlined based on patients’ needs and that this process should address the important elements of trust and communication. Impact The study's results suggest potential improvements to symptom management services that would enable patients’ needs to be addressed in a timely and humanistic manner.

Toward the complexities of the development and validation process of digital health interventions for the symptom management for patients with Chronic Kidney Disease: A scoping review based on the UK Medical Research Council Framework

“…Although symptom management is crucial for reducing the symptom burden of patients, there are currently barriers to clinical symptom assessment and management at both the healthcare and patient levels. On the healthcare level: Firstly, healthcare providers lack su cient awareness of the importance of symptom management [21], leading to frequent underestimation of the range and severity of symptoms in hemodialysis patients [7,[22][23][24]. Additionally, because symptom management requires multidisciplinary collaboration, the provision of medical services is often fragmented among nephrologists, nephrology nurses, primary healthcare personnel, social workers, etc., resulting in a lack of continuity in care and di culty for patients in accessing services [25,26].…”

The Role of Nephrology Nurses in Symptom Management – Reflections on the Kidney Disease: Improving Global Outcomes Controversies Conference on Symptom-Based Complications in Dialysis Care

“…Despite these tremendous impacts, symptom assessment and management can be challenging in clinical settings. 1 In May 2022, Kidney Disease: Improving Global Outcomes (KDIGO) held a Controversies Conference entitled Symptom-Based Complications in Dialysis to address the need for developing and testing solutions for assessing and managing symptoms associated with maintenance dialysis. The more than 60 participants included patients, physicians, behavioral therapists, nurses, pharmacists, and clinical researchers.…”