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.
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.
| Original language | English |
|---|---|
| Number of pages | 40 |
| Journal | BMC Nephrology |
| Volume | (In-Press) |
| Early online date | 9 Dec 2025 |
| DOIs | |
| Publication status | E-pub ahead of print - 9 Dec 2025 |
Bibliographical note
© The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing,adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source,
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Keywords
- Chronic Kidney Disease
- Social networks
- Self-management
- Peer support