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

Nicole Jane Scholes-Robertson; Martin Howell; Talia Gutman; Amanda Baumgart; Victoria SInka; David J. Tunnicliffe; Stephen May; Rachel Chalmers; Jonathan Craig; Allison Tong

doi:10.1136/bmjopen-2020-037529

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

Nicole Jane Scholes-Robertson, Martin Howell, Talia Gutman, Amanda Baumgart, Victoria SInka, David J. Tunnicliffe, Stephen May, Rachel Chalmers, Jonathan Craig, Allison Tong

College of Medicine and Public Health

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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.

Original language	English
Article number	e037529
Number of pages	11
Journal	BMJ Open
Volume	10
Issue number	9
DOIs	https://doi.org/10.1136/bmjopen-2020-037529
Publication status	Published - 23 Sept 2020

Bibliographical note

© 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.
http://creativecommons.org/licenses/by-nc/4.0/

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/.

Keywords

dialysis
qualitative research
renal transplantation
chronic kidney disease (CKD)
kidney replacement therapy (KRT)
rural communities

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@article{938703e420474ebf9cf6a1d41c05ea0b,

title = "Patients' and caregivers' perspectives on access to kidney replacement therapy in rural communities: systematic review of qualitative studies",

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.",

keywords = "dialysis, qualitative research, renal transplantation, chronic kidney disease (CKD), kidney replacement therapy (KRT), rural communities",

author = "Scholes-Robertson, {Nicole Jane} and Martin Howell and Talia Gutman and Amanda Baumgart and Victoria SInka and Tunnicliffe, {David J.} and Stephen May and Rachel Chalmers and Jonathan Craig and Allison Tong",

note = "{\textcopyright} 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. http://creativecommons.org/licenses/by-nc/4.0/ 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/. ",

year = "2020",

month = sep,

day = "23",

doi = "10.1136/bmjopen-2020-037529",

language = "English",

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TY - JOUR

T1 - Patients' and caregivers' perspectives on access to kidney replacement therapy in rural communities

T2 - systematic review of qualitative studies

AU - Scholes-Robertson, Nicole Jane

AU - Howell, Martin

AU - Gutman, Talia

AU - Baumgart, Amanda

AU - SInka, Victoria

AU - Tunnicliffe, David J.

AU - May, Stephen

AU - Chalmers, Rachel

AU - Craig, Jonathan

AU - Tong, Allison

N1 - © 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. http://creativecommons.org/licenses/by-nc/4.0/ 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/.

PY - 2020/9/23

Y1 - 2020/9/23

N2 - 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.

AB - 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.

KW - dialysis

KW - qualitative research

KW - renal transplantation

KW - chronic kidney disease (CKD)

KW - kidney replacement therapy (KRT)

KW - rural communities

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UR - http://purl.org/au-research/grants/NHMRC/1092957

UR - http://purl.org/au-research/grants/NHMRC/1037162

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JO - BMJ Open

JF - BMJ Open

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ER -

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

Abstract

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