Indigenous Peoples’ perspectives of living with chronic kidney disease: systematic review of qualitative studies

Indigenous Peoples are defined as those who first lived in a region and have distinct cultural traditions, knowledge, and language that provide a basis for positive self-image and healthy identity.1United Nations Declaration on the Rights of Indigenous Peoples.https://www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdfDate accessed: February 23, 2022Google Scholar Indigenous Peoples have retained much of their cultural identity and displayed remarkable resilience in managing health using holistic approaches,2King M. Smith A. Gracey M. Indigenous health part 2: the underlying causes of the health gap.Lancet. 2009; 374: 76-85Abstract Full Text Full Text PDF PubMed Scopus (893) Google Scholar despite being dispossessed of their lands through ongoing colonization that threatens their livelihoods and cultures.3Stephens C. Nettleton C. Porter J. et al.Indigenous peoples’ health—why are they behind everyone, everywhere?.Lancet. 2005; 366: 10-13Abstract Full Text Full Text PDF PubMed Scopus (150) Google Scholar Indigenous Peoples are challenged by low health literacy, poor access to health care, lack of cultural safety in mainstream health services, and systemic racism and cultural misunderstanding.2King M. Smith A. Gracey M. Indigenous health part 2: the underlying causes of the health gap.Lancet. 2009; 374: 76-85Abstract Full Text Full Text PDF PubMed Scopus (893) Google Scholar Consequently, Indigenous Peoples health is adversely affected, with the prevalence of noncommunicable diseases increasing.4Gracey M. King M. Indigenous health part 1: determinants and disease patterns.Lancet. 2009; 374: 65-75Abstract Full Text Full Text PDF PubMed Scopus (840) Google Scholar, 5Australian Institute of Health and WelfareAustralian Burden of Disease Study: Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2011. Australian Institute of Health and Welfare, 2016Google Scholar, 6World Health OrganizationWorld Health Statistics 2019: Monitoring Health for the SDGs: Sustainable Development Goals. World Health Organisation, 2019Google Scholar The high burden of chronic disease among Indigenous Peoples is widely recognized, in particular, the high incidence of hypertension and diabetes which increases the risk of developing kidney disease.7Thomas D.A. Huang A. McCarron M.C.E. et al.A retrospective study of chronic kidney disease burden in Saskatchewan’s First Nations People.Can J Kidney Health Dis. 2018; 5: 1-13Crossref Scopus (12) Google Scholar, 8Yeates K.E. Tonelli M. Chronic kidney disease among Aboriginal people living in Canada.Clin Nephrol. 2011; 74: S57-S60Google Scholar, 9Dyck R.F. Naqshbandi Hayward M. Harris S.B. Prevalence, determinants and co-morbidities of chronic kidney disease among First Nations adults with diabetes: results from the CIRCLE study.BMC Nephrol. 2012; 13: 57Crossref PubMed Scopus (25) Google Scholar, 10Jha V. Garcia Garcia G. Iseki K. et al.Chronic kidney disease: global dimension and perspectives.Lancet. 2013; 382: 260-272Abstract Full Text Full Text PDF PubMed Scopus (2748) Google Scholar For Australian Indigenous Peoples, chronic kidney disease (CKD; defined as glomerular filtration rate <60 ml/min per 1.73 m2), occurs younger, progresses more quickly to kidney failure requiring kidney replacement therapy, and has a mortality rate at least 7 times higher than in the non-Indigenous population.11Cass A. Snelling P. Brown A. Preventing chronic disease to close the gap in life expectancy for Indigenous Australians. Sydney University Press, 2012https://ses.library.usyd.edu.au/handle/2123/12571Date accessed: July 29, 2021Google Scholar,12Zhao Y. Dempsey K. Causes of inequality in life expectancy between Indigenous and non-Indigenous people in the Northern Territory, 1981–2000: a decomposition analysis.Med J Aust. 2006; 184: 490-494Crossref PubMed Scopus (72) Google Scholar For many Indigenous Peoples, access to quality health care is difficult and treatment options such as transplantation are limited.8Yeates K.E. Tonelli M. Chronic kidney disease among Aboriginal people living in Canada.Clin Nephrol. 2011; 74: S57-S60Google Scholar Fear of engaging inappropriate Western health services drives this along with concerns about leaving their homeland, cultural roots, and community for treatment in centralized locations.2King M. Smith A. Gracey M. Indigenous health part 2: the underlying causes of the health gap.Lancet. 2009; 374: 76-85Abstract Full Text Full Text PDF PubMed Scopus (893) Google Scholar Many Indigenous Peoples with CKD experience similar challenges to the general population; however, uniquely they may encounter inequitable access to responsive, culturally safe health information and services.13Hughes J. Dembski L. Kerrigan V. et al.Gathering perspectives – finding solutions for chronic and end stage kidney disease: Indigenous patient voices – 2017 Symposium Report.Nephrology. 2018; 23: 5-13Crossref PubMed Scopus (16) Google Scholar A thematic synthesis of available qualitative research on the experience, impact, and challenges of CKD among Indigenous Peoples, globally, can broaden our understanding across different First Nations groups and settings. The aim of this study was to describe global perspectives of Indigenous Peoples experience of living with CKD. We followed the Enhancing Transparency of Reporting the Synthesis of Qualitative Research framework.14Tong A. Flemming K. McInnes E. et al.Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ.BMC Med Res Methodol. 2012; 12: 181Crossref PubMed Scopus (1627) Google Scholar Ethical approval was not required because the study results are available in the public domain. Qualitative studies that described the experiences and perspectives of Indigenous Peoples, aged ≥18 years, with CKD were eligible. Participants with any stage of kidney disease (including those receiving kidney replacement therapy) were eligible as they may have reflected on their experience of CKD before requiring kidney replacement therapy. Studies were excluded if they did not focus on the target population, used structured surveys, or were epidemiologic studies, editorials, or reviews. Non-English studies were excluded because of a lack of resources for translation and limited feasibility in understanding and synthesizing cultural and linguistic nuances, potentially leading to misinterpretation of the study results. The search strategy is provided in Supplementary Figure S1. Searches were conducted in MEDLINE, Embase, PsycINFO, and CINAHL from database inception to October 7, 2021. We also searched Google Scholar, PubMed, and reference lists of articles and reviews. Search results were collated in EndNote X9 and Covidence systematic review software (Veritas Health Innovation; www.covidence.org), where titles and abstracts were screened by MK and NE. Articles not meeting the inclusion criteria were excluded. Full texts of potential articles were assessed for eligibility by MK, NE, and VS, a researcher of Australian Aboriginal descent, to identify those for inclusion. Details of the included studies were extracted into Excel by VS, to enable multiple authors to record their evaluation of study quality. The comprehensiveness of reporting of each study was assessed independently by 5 authors (NE, VS, MK, TV, and NS-R) using the Consolidated Criteria for Reporting Qualitative Health Research framework,15Tong A. Sainsbury P. Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.Int J Qual Health Care. 2007; 19: 349-357Crossref PubMed Scopus (15459) Google Scholar which includes criteria specific to research team, study methods, study context, and method of analysis and interpretation. We also used the CONSolIDated critERia, the CONSIDER statement,16Huria T. Palmer S.C. Pitama S. et al.Consolidated criteria for strengthening reporting of health research involving indigenous peoples: the CONSIDER statement.BMC Med Res Methodol. 2019; 19: 173Crossref PubMed Scopus (144) Google Scholar for strengthening the reporting of health research involving Indigenous Peoples to assess how well Indigenous preferences and priorities were addressed when the research was conducted. The CONSIDER checklist, comprising 17 criteria within 8 research domains, was used by the same authors for independent review. Any differences were discussed until consensus was reached. Thematic synthesis17Thomas J. Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews.BMC Med Res Methodol. 2008; 8: 45Crossref PubMed Scopus (3881) Google Scholar was used to analyze the data through an iterative process involving familiarization with the data, coding, generating themes, and defining the scope and focus on each theme and subtheme. All participant quotations and text under the Results or Discussion/Conclusion sections were entered into HyperRESEARCH, version 4.0.3 (ResearchWare Inc), for data management. Author NE conducted line-by-line coding and inductively identified experiences and perspectives of Indigenous Peoples with CKD, grouping concepts into themes and subthemes. These were reviewed and discussed at length by NE, VS, MK, and NS-R, to challenge personal assumptions, ensure the analytical framework reflected the full range and depth of the data, and identify conceptual links to generate a thematic schema. From 1895 articles retrieved, 12 studies met the inclusion criteria (Figure 1), with a cohort of 201 Indigenous participants from 4 high-income countries: United States, Canada, Australia, and New this participants CKD not requiring kidney replacement therapy. included studies were conducted with Indigenous groups living in and with studies people living in are in E. 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