ArticleBMC nephrology2024
"Systems seem to get in the way": a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease.
Article in BMC nephrology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed, 7 citations in OpenAlex.
- Engaging Dialysis Teams in Shared Decision-Making Conversations With Patients to Improve Rates of Kidney Transplantation.Kidney medicine · 2026Article
- Experiences of Formal and Informal Support Among Adult-Daughter Caregivers of People With Dementia in Sweden: A Qualitative Study.Dementia (London, England) · 2026Article
- e-Mental Health Intervention Preferences Among Informal Caregivers of Adults Living with Chronic Kidney Disease: Semistructured Interview Study.JMIR human factors · 2026Article
- Caregiver Perspectives for Pediatric Patients with Acute Kidney Injury on Dialysis: A Narrative Review.Journal of multidisciplinary healthcare · 2026Review
- The role of social networks in supporting self-management in CKD: a narrative synthesis.BMC nephrology · 2025Review
- Machine Learning Algorithms for Predicting the Impact of Care Burden on the Psychological Well-being of Caregivers for Chronic Kidney Disease Patients.Iranian journal of nursing and midwifery researchArticle
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe well-being of informal caregivers of people living with chronic kidney disease is influenced by their experiences with support, however, few studies have focused on exploring these experiences. This study aimed to explore informal caregivers' experiences accessing and receiving support while caring for someone living with chronic kidney disease.
methodsInformal caregivers of people living with chronic kidney disease (n = 13) in the United Kingdom were primarily recruited via community organisations and social media adverts to participate in semi-structured interviews. Interviews explored support needs, experiences of receiving support from different groups (e.g. healthcare professionals, family/friends), and barriers and facilitators to accessing support. Support was understood as including emotional, practical, and informational support. Data were analysed using reflexive thematic analysis.
resultsThree themes were generated: (1) "Systems seem to get in the way" - challenges within support systems, illustrating the challenges informal caregivers encountered when navigating complex support systems; (2) Relying on yourself, describing how informal caregivers leveraged their existing skills and networks to access support independently, while recognising the limitations of having to rely on yourself to find support; and (3) Support systems can "take the pressure off", showing how support systems were able to help informal caregivers cope with the challenges they experienced if certain conditions were met.
conclusionsIn response to the challenges informal caregivers experienced when seeking support, improvements are needed to better consider informal caregiver needs within healthcare systems, and to develop interventions tailored to informal caregiver needs and context. Within the healthcare system, informal caregivers may benefit from system navigation support and better integration within healthcare teams to ensure their informational support needs are met. New interventions developed to support informal caregivers should fit within their existing support systems and incorporate the qualities of support, such as empathy, that were valued. Additionally, use of an equity framework and user-centered design approaches during intervention development could help ensure interventions are accessible and acceptable.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.