{
  "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.",
  "authors": [
    {
      "affiliations": [
        "Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia",
        "Non Communicable Diseases, Nutrition Research Division, International Centre for Diarrhoeal Disease Research Bangladesh, Dhaka, Dhaka Division, Bangladesh"
      ],
      "name": "Noshin Farzana"
    },
    {
      "affiliations": [
        "Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia",
        "Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia"
      ],
      "name": "Chandana Guha"
    },
    {
      "affiliations": [
        "Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia"
      ],
      "name": "Nibras Jasim"
    },
    {
      "affiliations": [
        "Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia",
        "Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia"
      ],
      "name": "Amanda Sluiter"
    },
    {
      "affiliations": [
        "Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia",
        "Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia"
      ],
      "name": "Allison Jaure"
    },
    {
      "affiliations": [
        "Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia",
        "Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia"
      ],
      "name": "Karine Manera"
    }
  ],
  "title": "Caregiver experiences of social isolation and loneliness in chronic kidney disease: systematic review of qualitative studies",
  "uid": "7d449349-07f7-5100-b249-ea95afd91511"
}