Lived experiences and decision making among patients and caregivers choosing conservative kidney management: A qualitative study.

Abstract

Background: The rising prevalence of kidney failure is a global concern. Individuals with kidney failure experience increased symptom burden, reduced quality of life, and increased healthcare utilisation. Kidney supportive care (KSC), a palliative-aligned approach that emphasises comfort, dignity, and holistic support for patients and families is offered as an alternative to dialysis treatments. Little research has explored how patients and caregivers experience and decide on conservative kidney management and KSC.

Objectives: To explore the lived experiences of patients with kidney failure and their caregivers in treatment decision-making for conservative kidney management.

Design: A qualitative inquiry using an interpretative phenomenological approach was conducted.

Methods: Semi-structured interviews were conducted with patient-caregiver dyads to understand patient and caregiver lived experiences in choosing conservative kidney management. Patients who were aged 21 or older with Chronic Kidney Disease Stage G5 (eGFR ⩽15 ml/min) and had chosen KSC, were recruited along with their caregivers. Semi-structured, in-person interviews were conducted with nine patients and eight caregivers. Interviews were transcribed verbatim. Two researchers performed independent coding and identified meanings and themes which alluded to the lived experiences of individuals under KSC and their caregivers.

Results: Four themes captured the lived experience and decision-making journey: (1) lived reality of kidney failure, (2) navigating treatment decision making, (3) the role of family and healthcare providers, and (4) facing the future and perceived needs in supportive care. Decisions were influenced by personal values, comorbidities, age, clinician recommendations, fear of suffering, and witnessing others on dialysis. Most decisions involved collaborative discussions between patients, families, and clinicians. Participants expressed the need for enhanced continuity of KSC and community-based early palliative care access.

Conclusion: Decisions to pursue conservative kidney management are multidimensional, shaped by patients' values, social contexts, and healthcare interactions. Understanding these factors ensures informed choices and better support during the decision-making and care transition process to KSC. Findings highlight need to improve patient-provider communication and community support within an early palliative care-integrated approach.