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dc.contributor.author
Roberti, Javier Eugenio
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Cummings, Amanda
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Myall, Michelle
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Harvey, Jonathan E.
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Lippiett, Kate
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Hunt, Katherine
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Cicora, Federico
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Alonso, Juan Pedro
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May, Carl R.
dc.date.available
2022-12-02T18:17:05Z
dc.date.issued
2018-09
dc.identifier.citation
Roberti, Javier Eugenio; Cummings, Amanda; Myall, Michelle; Harvey, Jonathan E.; Lippiett, Kate; et al.; Work of being an adult patient with chronic kidney disease: A systematic review of qualitative studies; BMJ Publishing Group; BMJ Open; 8; 9; 9-2018; 1-29
dc.identifier.issn
2044-6055
dc.identifier.uri
http://hdl.handle.net/11336/180044
dc.description.abstract
Introduction Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). Methods Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. Results Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem. Conclusions Being a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers’ lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients’ trajectories and contribute towards a better illness experience for those living with CKD.
dc.format
application/pdf
dc.language.iso
eng
dc.publisher
BMJ Publishing Group
dc.rights
info:eu-repo/semantics/openAccess
dc.rights.uri
https://creativecommons.org/licenses/by-nc/2.5/ar/
dc.subject
CHRONIC KIDNEY DISEASE
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HAEMODIALYSIS
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KIDNEY TRANSPLANT
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SYSTEMATIC REVIEW
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TREATMENT BURDEN
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Otras Sociología
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Sociología
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CIENCIAS SOCIALES
dc.title
Work of being an adult patient with chronic kidney disease: A systematic review of qualitative studies
dc.type
info:eu-repo/semantics/article
dc.type
info:ar-repo/semantics/artículo
dc.type
info:eu-repo/semantics/publishedVersion
dc.date.updated
2022-11-10T15:31:34Z
dc.identifier.eissn
2044-6055
dc.journal.volume
8
dc.journal.number
9
dc.journal.pagination
1-29
dc.journal.pais
Reino Unido
dc.description.fil
Fil: Roberti, Javier Eugenio. Fundación FINAER; Argentina
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Fil: Cummings, Amanda. University of Southampton; Reino Unido
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Fil: Myall, Michelle. University of Southampton; Reino Unido
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Fil: Harvey, Jonathan E.. University of Southampton; Reino Unido
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Fil: Lippiett, Kate. University of Southampton; Reino Unido
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Fil: Hunt, Katherine. University of Southampton; Reino Unido
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Fil: Cicora, Federico. Fundación FINAER; Argentina
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Fil: Alonso, Juan Pedro. Universidad de Buenos Aires. Facultad de Ciencias Sociales. Instituto de Investigaciones "Gino Germani"; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina
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Fil: May, Carl R.. London School of Hygiene and Tropical Medicine; Reino Unido
dc.journal.title
BMJ Open
dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/url/https://bmjopen.bmj.com/content/8/9/e023507
dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/doi/http://dx.doi.org/10.1136/bmjopen-2018-023507
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