Interventions to support decision-making, health literacy and self-management in ethnic-minority adults living with chronic kidney disease: a systematic review

Roshana Kanagaratnam; Stephanie Zwi; Angela C Webster; Jennifer Isautier; Kelly Lambert; Heather L Shepherd; Kirsten McCaffery; Kamal Sud; Danielle Marie Muscat

doi:10.1093/ckj/sfac276

Interventions to support decision-making, health literacy and self-management in ethnic-minority adults living with chronic kidney disease: a systematic review

Clin Kidney J. 2023 Mar 10;16(6):914-927. doi: 10.1093/ckj/sfac276. eCollection 2023 Jun.

Authors

Roshana Kanagaratnam¹, Stephanie Zwi^{1

2}, Angela C Webster^{1

3

4}, Jennifer Isautier¹, Kelly Lambert^{5

6}, Heather L Shepherd^{7

8}, Kirsten McCaffery^{1

2}, Kamal Sud^{9

10}, Danielle Marie Muscat^{1

2}

Affiliations

¹ The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney, NSW, Australia.
² The University of Sydney, Faculty of Medicine and Health, School of Public Health, Sydney Health Literacy Lab, Sydney, NSW, Australia.
³ Centre for Transplant and Renal Research, Westmead Hospital, Sydney, NSW, Australia.
⁴ NHMRC Clinical Trials Centre, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.
⁵ Discipline of Nutrition and Dietetics, Faculty of Science, Medicine and Health, School of Medicine, University of Wollongong, Wollongong, Australia.
⁶ Illawarra Health and Medical Research Institute, Wollongong.
⁷ The University of Sydney, Faculty of Science, School of Psychology, Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), Sydney, NSW, Australia.
⁸ The University of Sydney, Faculty of Medicine and Health, Susan Wakil School of Nursing, Sydney, NSW, Australia.
⁹ The University of Sydney, Faculty of Medicine and Health, Nepean Clinical School, NSW, Australia.
¹⁰ Department of Renal Medicine, Nepean Hospital, NSW, Australia.

Abstract

Optimal patient care is directed by clinical practice guidelines, with emphasis on shared decision-making. However, guidelines-and interventions to support their implementation-often do not reflect the needs of ethnic minorities, who experience inequities in chronic kidney disease (CKD) prevalence and outcomes. This review aims to describe what interventions exist to promote decision-making, self-management and/or health literacy for ethnic-minority people living with CKD, describe intervention development and/or adaptation processes, and explore the impact on patient outcomes. Six databases were searched (MEDLINE, PsychINFO, Scopus, EMBASE, CINAHL, InformitOnline) and two reviewers independently extracted study data and assessed risk of bias. Twelve studies (n = 291 participants), conducted in six countries and targeting nine distinct ethnic-minority groups, were included. Intervention strategies consisted of: (i) face-to-face education/skills training (three studies, n = 160), (ii) patient education materials (two studies, n = unspecified), (iii) Cultural Health Liaison Officer (six studies, n = 106) or (iv) increasing access to healthcare (three studies, n = 25). There was limited description of cultural targeting/tailoring. Where written information was translated into languages other than English, the approach was exact translation without other cultural adaptation. Few studies reported on community-based research approaches, intervention adaptations requiring limited or no literacy (e.g. infographics; photographs and interviews with local community members) and the inclusion of Cultural Health Liaison Officer as part of intervention design. No community-based interventions were evaluated for their impact on clinical or psychosocial outcomes. All interventions conducted in the hospital settings reported favourable outcomes (e.g. reduction in blood pressure) compared with routine care but were limited by methodological issues.

Keywords: CKD; chronic kidney disease; decision-making; ethnic minority; self-management.

Publication types

Review