The role of social networks in supporting self-management in CKD: a narrative synthesis

Abstract

Background: Chronic kidney disease (CKD) is a growing global health concern requiring effective self-management to mitigate progression and improve quality of life. While self-management is increasingly recognised as a socially embedded practice, the specific contributions of social network members to this process in CKD are not well understood. Objective: To synthesise and interpret existing literature on how social networks support individuals living with early-stage CKD and identify gaps in understanding. Methods: We conducted a narrative review. Fourteen studies involving 560 participants—including individuals living with CKD, their social network members, healthcare professionals, peer mentors, and religious leaders—were analysed to explore the role of social networks in CKD self-management. Results: Four key themes emerged: (1) The burden of kidney disease uncertainty (2), Everyday challenges of managing CKD (3), The loneliest disease, and (4) The role of peer support. Participants frequently reported emotional distress linked to diagnostic uncertainty and inconsistent information, especially from non-specialist providers. CKD management posed significant practical and psychological burdens, particularly for caregivers, who often felt unsupported and invisible within healthcare systems. Peer support—both informal and formal—played a crucial role in reducing isolation and providing context-specific guidance, especially when tailored to individual preferences and illness trajectories. Conclusions: This is the first review to explore the role of social networks in supporting the self-management of people living with CKD. The studies highlighted that early-stage CKD is shaped by diagnostic uncertainty, limited formal support, and social invisibility. People with CKD rely on diverse social networks for self-management, yet unclear care pathways and inconsistent communication hinder this support. Integrated models that combine early specialist input, peer support, and trained generalists are needed. Recognising and supporting these networks is essential to reduce isolation, improve understanding, and enable meaningful engagement with self-management across the CKD trajectory.