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      Patients’ and caregivers’ perspectives on access to kidney replacement therapy in rural communities: systematic review of qualitative studies

      systematic-review

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          Abstract

          Objective

          Patients with chronic kidney disease (CKD) requiring kidney replacement therapy (KRT) in rural communities encounter many barriers in accessing equitable care and have worse outcomes compared with patients in urban areas. This study aims to describe the perspectives of patients and caregivers on access to KRT in rural communities to inform strategies to maximise access to quality care, and thereby reduce disadvantage, inequity and improve health outcomes.

          Setting

          18 studies (n=593 participants) conducted across eight countries (Australia, Canada, the UK, New Zealand, Ghana, the USA, Tanzania and India).

          Results

          We identified five themes: uncertainty in navigating healthcare services (with subthemes of struggling to absorb information, without familiarity and exposure to options, grieving former roles and yearning for cultural safety); fearing separation from family and home (anguish of homesickness, unable to fulfil family roles and preserving sense of belonging in community); intense burden of travel and cost (poverty of time, exposure to risks and hazards, and taking a financial toll); making life-changing sacrifices; guilt and worry in receiving care (shame in taking resources from others, harbouring concerns for living donor, and coping and managing in isolation).

          Conclusion

          Patients with CKD in rural areas face profound and inequitable challenges of displacement, financial burden and separation from family in accessing KRT, which can have severe consequences on their well-being and outcomes. Strategies are needed to improve access and reduce the burden of obtaining appropriate KRT in rural communities.

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          Most cited references54

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          Rural health disparities, population health, and rural culture.

          In this commentary, I place the maturing field of rural health research and policy in the context of the rural health disparities documented in Health United States, 2001, Urban and Rural Health Chartbook. Because of recent advances in our understanding of the determinants of health, the field must branch out from its traditional focus on access to health care services toward initiatives that are based on models of population health. In addition to presenting distinct regional differences, the chartbook shows a pattern of risky health behaviors among rural populations that suggest a "rural culture" health determinant. This pattern suggests that there may be environmental and cultural factors unique to towns, regions, or United States Department of Agriculture (USDA) economic types that affect health behavior and health.
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            Universal health coverage and universal access.

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              Patient navigators for people with chronic disease: A systematic review

              Background People with chronic diseases experience barriers to managing their diseases and accessing available health services. Patient navigator programs are increasingly being used to help people with chronic diseases navigate and access health services. Objective The objective of this review was to summarize the evidence for patient navigator programs in people with a broad range of chronic diseases, compared to usual care. Methods We searched MEDLINE, EMBASE, CENTRAL, CINAHL, PsycINFO, and Social Work Abstracts from inception to August 23, 2017. We also searched the reference lists of included articles. We included original reports of randomized controlled trials of patient navigator programs compared to usual care for adult and pediatric patients with any one of a defined set of chronic diseases. Results From a total of 14,672 abstracts, 67 unique studies fit our inclusion criteria. Of these, 44 were in cancer, 8 in diabetes, 7 in HIV/AIDS, 4 in cardiovascular disease, 2 in chronic kidney disease, 1 in dementia and 1 in patients with more than one condition. Program characteristics varied considerably. Primary outcomes were most commonly process measures, and 45 of 67 studies reported a statistically significant improvement in the primary outcome. Conclusion Our findings indicate that patient navigator programs improve processes of care, although few studies assessed patient experience, clinical outcomes or costs. The inability to definitively outline successful components remains a key uncertainty in the use of patient navigator programs across chronic diseases. Given the increasing popularity of patient navigators, future studies should use a consistent definition for patient navigation and determine which elements of this intervention are most likely to lead to improved outcomes. Trial registration PROSPERO #CRD42013005857
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2020
                23 September 2020
                : 10
                : 9
                : e037529
                Affiliations
                [1 ]departmentSydney School of Public Health , The University of Sydney , Sydney, New South Wales, Australia
                [2 ]departmentCentre for Kidney Research , The Children's Hospital at Westmead , Westmead, New South Wales, Australia
                [3 ]departmentSchool of Rural Medicine , University of New England , Armidale, New South Wales, Australia
                [4 ]departmentCollege of Medicine and Public Health , Flinders University Faculty of Medicine Nursing and Health Sciences , Adelaide, South Australia, Australia
                Author notes
                [Correspondence to ] Ms Nicole Jane Scholes-Robertson; nicole.scholes-robertson@ 123456sydney.edu.au
                Author information
                http://orcid.org/0000-0001-8260-0453
                http://orcid.org/0000-0001-9740-712X
                Article
                bmjopen-2020-037529
                10.1136/bmjopen-2020-037529
                7513603
                32967878
                40ffe5bc-657a-43b5-93fe-28b6cd158e07
                © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/.

                History
                : 06 February 2020
                : 18 August 2020
                : 20 August 2020
                Categories
                Qualitative Research
                1506
                1725
                Original research
                Custom metadata
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                Medicine
                qualitative research,dialysis,renal transplantation
                Medicine
                qualitative research, dialysis, renal transplantation

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