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

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 needs of ethnic minorities who experience inequities in 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 (3 studies, n = 160), ii) patient education materials (2 studies, n = unspecified), iii) cultural health liaison officer (6 studies, n = 106) or iv) increasing access to healthcare (3 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 Healthcare Workers 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 favorable outcomes (e.g. reduction in blood pressure) compared to routine care but were limited by methodological issues.