Caregiver experiences of social isolation and loneliness in chronic kidney disease: systematic review of qualitative studies.

Clinical Snapshot

Key Findings

• P Value: Not applicable — qualitative synthesis methodology

• Effect Size: Not applicable — qualitative synthesis; no quantitative effect size calculated

• Primary Outcome: Four major themes describing caregiver social isolation and loneliness in CKD: (1) confined by the patient's needs; (2) limited care assistance exacerbating isolation; (3) disrupting relationships and social roles; (4) coping with support resources

• Nnt Or Sensitivity: Not applicable; qualitative review — transferability and credibility of themes serve as the qualitative analogue of precision metrics. Themes were derived from 598 caregivers across 19 studies in 28 countries, supporting broad transferability

• Confidence Interval: Not applicable — qualitative synthesis methodology

Clinical Application

The findings are directly actionable within existing healthcare frameworks. Nephrologists, renal nurses, social workers, and general practitioners can integrate routine caregiver social wellbeing screening into CKD care plans. Referral pathways to respite care services, peer support groups, and social work are feasible within current multidisciplinary renal team structures. Dietary counselling that acknowledges caregiver burden is a low-cost, immediately implementable change. Australia has approximately 1.7 million people living with CKD, with a disproportionate burden in Aboriginal and Torres Strait Islander communities, many of whom rely heavily on informal caregivers. The RACGP's Standards for General Practice and Kidney Health Australia's CKD Management in General Practice guidelines both acknowledge the importance of carer support, but specific guidance on social isolation screening for CKD caregivers is lacking. Respite care funding through the NDIS and My Aged Care may be relevant for eligible caregiver-patient dyads, though access barriers persist in rural and remote settings. The Carer Gateway (Australian Government) provides a national support service that could be systematically promoted by renal teams. PBS-listed treatments for CKD (e.g., SGLT2 inhibitors, erythropoiesis-stimulating agents) reduce some disease burden but do not directly address caregiver social isolation, reinforcing the need for complementary psychosocial support pathways. Informal caregivers (family members, partners, friends) of adults and potentially children with CKD across all disease stages, including pre-dialysis CKD, haemodialysis, peritoneal dialysis, and post-transplantation. The findings are particularly relevant for caregivers of patients on dialysis, where treatment burden and time demands are greatest.

Abstract

OBJECTIVES: This qualitative systematic review aimed to describe the experiences and perspectives of loneliness and social isolation among informal caregivers of people with chronic kidney disease (CKD). METHODS: Terms for caregivers, qualitative research, loneliness and social isolation and CKD were entered into MEDLINE, Embase, CINAHL and PsycINFO and searched from inception to May 2025. Qualitative studies that described social isolation and loneliness among caregivers of people with CKD were included in this review. Study characteristics were extracted into Microsoft Excel. Qualitative data from each study were imported into HyperRESEARCH and analysed using thematic synthesis. RESULTS: We included 19 articles involving 598 caregivers of people with CKD from 28 countries. Four major themes with subthemes were identified: confined by the patient's needs (social withdrawal due to unrelenting demands, separated from communities due to treatment, torn between work and caregiving responsibilities, foregoing social outings with family and friends, restricted by patient's diet, feeling protective against infection risk); limited care assistance exacerbating isolation (inadequate familial support, absence of respite care, lacking accessible guidance from health professionals); disrupting relationships and social roles (sacrificing social needs and identity, family conflicts worsening isolation, withdrawing to avoid stigma and ridicule, grappling with hopelessness, reluctance to share struggles); and coping with support resources (connecting with other families, seeking assistance from support services, finding support through faith). CONCLUSIONS: Caregivers of people with CKD experience restricted social participation and loss of social roles and identity, which can exacerbate feelings of loneliness and social isolation. Support services are needed to prevent and address social isolation and loneliness in CKD caregivers. PROSPERO REGISTRATION NUMBER: CRD420250637194.

References

1. 1.Farzana, N., Guha, C., Jasim, N., Sluiter, A., Jaure, A., & Manera, K. (2026). Caregiver experiences of social isolation and loneliness in chronic kidney disease: systematic review of qualitative studies. BMJ Open. https://doi.org/10.1136/bmjopen-2025-112520