“Understanding Chronic Kidney Disease Self-Management Barriers and Facilitators: A Consumer-Led Qualitative Study”

Abstract

Background

Although self-management is essential for slowing the progression of chronic kidney disease and improving quality of life, patients continue to face substantial and varied challenges in managing their condition. Existing research has identified barriers to self-management but less is known about the barriers and facilitators experienced by patients with advanced chronic kidney disease not yet receiving kidney replacement therapy (dialysis and transplantation). Furthermore, few studies have been consumer-led or have integrated clinician and patient perspectives in a shared discussion environment.

Aim

To explore the barriers to, and facilitators of, chronic kidney disease self-management from the perspectives of key stakeholders, using a consumer-led qualitative approach.

Methods

Patients with chronic kidney disease and clinicians were purposively sampled from a large renal service in South Australia to participate in a focus group interview, co-facilitated by a person living with chronic kidney disease. Three, 2-h focus group interviews involving 11 renal consumers and six renal clinicians were undertaken following a semi-structured interview guide that was co-developed with renal consumers and transcribed verbatim. Transcripts were coded and analysed using inductive thematic analysis.

Results

Six themes emerged: patient individuality, information and education resources, disease and treatment burden, healthcare team services, patient-clinician relationships, and teaching and learning strategies. Identified barriers included patient passivity, limited chronic kidney disease awareness, fragmented care, impersonal clinical approaches, and physical/emotional distress. Facilitators included positive attitudes, goal setting, trust and satisfaction with clinicians, effective communication, shared decision-making, person-centred care and caregiver support.

Conclusion

This study identified that chronic kidney disease self-management is influenced by interacting personal factors, relational factors and systemic factors. These qualitative insights demonstrate that patients' ability to self-manage is shaped not only by knowledge, but by emotional burden, confidence, and the quality of relationships within the healthcare system. Consumer-led approaches that reflect these lived experiences may enhance the relevance and acceptability of future self-management support.