BackgroundTo date, limited research has been dedicated to exploring the experience of decision-making for chronic kidney disease (CKD) patients who have initiated dialysis and have to make decisions in the context of managing multiple illnesses. Evidence about the experience of decision-making for minority or disadvantaged groups living with CKD (e.g. culturally and linguistically diverse adults; those with lower health literacy or cognitive impairment) is also lacking. This study aimed to explore the experience of healthcare decision-making among culturally and linguistically diverse adults receiving in-centre haemodialysis for advanced CKD.MethodsSemi-structured interviews with English or Arabic-speaking adults recruited from four large haemodialysis units in Greater Western Sydney, Australia using stratified, purposive sampling. Interviews were audio-recorded, transcribed verbatim, and analysed using the Framework method.ResultsInterviews were conducted with 35 participants from a range of cultural backgrounds (26 English-language; 9 Arabic-language). One quarter had limited health literacy as assessed by the Single Item Literacy Screener. Four major themes were identified from the data, highlighting that participants had limited awareness of decision-points throughout the CKD trajectory (other than the decision to initiate dialysis), expressed passivity regarding their involvement in healthcare decisions, and reported inconsistent information provision within and across dialysis units. There was diversity within cultural and linguistic groups in terms of preferences and beliefs regarding religiosity, decision-making and internalised prototypical cultural values.ConclusionWithout sustained effort, adults living with CKD may be uninformed about decision points throughout the CKD trajectory and/or unengaged in the process of making decisions. While culture may be an important component of people’s lives, cultural assumptions may oversimplify the diverse individual differences that exist within cultural groups.Electronic supplementary materialThe online version of this article (10.1186/s12882-018-1131-y) contains supplementary material, which is available to authorized users.
Kidney biopsy is part of the diagnostic workup of many children with renal disease. Traditionally, a perpendicular approach to the biopsy has been used, but more recently, some proceduralists have favoured a tangential approach. It is not clear if one technique is superior with regards to tissue adequacy or complication rates. In our centre, interventional radiologists (IR) use general anaesthetic and a tangential approach, whereas paediatric nephrologists (PN) use sedation and a perpendicular approach. We examined consecutive native kidney biopsies performed between January 2008 and December 2017 for adequacy (sufficient tissue for light and electron microscopy and immunofluorescence) and examined the electronic medical records for data regarding technique and complications. IR performed 72 (29%) of the 245 native kidney biopsies, obtaining more total glomeruli (median 39 vs 16, p < 0.001) and more glomeruli per tissue core (median 13 vs 8, p < 0.001) than PN. No differences in specimen adequacy were observed between the two groups (79% IR vs 81% PN, p = 0.75) and a diagnosis could be made in 99% and 94% respectively (p = 0.1). A statistically lower rate of peri-nephric haematoma (28% vs 42%, p = 0.04) was detected in the IR group, but there were no significant differences in other complications. One patient required a blood transfusion (PN) and another required surgical intervention for a perinephric haematoma (IR).Conclusion: IR obtained larger samples and number of glomeruli, but the overall adequacy for native kidney biopsies was good using both perpendicular and tangential techniques, with low rates of significant complications. What is Known:• Kidney biopsy is integral to the diagnostic work-up of many children with kidney disease.• Kidney biopsy is a safe procedure with well-established complications in a minority of children. What is New:• Interventional radiologists had higher biopsy yield than paediatric nephrologists, possibly due to the tangential approach.• Biopsy adequacy rates are high using both techniques and provided a diagnosis in over 95% of cases.
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.
Background Kidney biopsy is part of the diagnostic workup of many children with renal disease. Traditionally a perpendicular approach to the biopsy has been used but more recently some proceduralists have favoured a tangential approach. It is not clear if one technique is superior with regards to tissue adequacy or complication rates. In our centre interventional radiologists (IR) use general anaesthetic and a tangential approach whereas paediatric nephrologists (PN) use sedation and a perpendicular approach. Methods We examined consecutive kidney biopsies performed between January 2008 and December 2017 for adequacy (sufficient tissue for light and electron microscopy and immunofluorescence) and examined the electronic medical records for data regarding technique and complications. Results IR performed 72 (29.4%) of the 245 native kidney biopsies, obtaining more total glomeruli (median 39 vs 16, p<0.001) and more glomeruli per tissue core (median 13.2 vs 8.0, p<0.001) than PN. No differences in specimen adequacy were observed between the two groups (79.2% IR vs 80.9% PN, p=0.75) and a diagnosis could be made in 98.6% and 93.6% respectively (p=0.1). A statistically lower rate of peri-nephric haematoma (27.8% vs 41.6%, p=0.04) was detected in the IR group, but there were no significant differences in other complications. One patient required a blood transfusion (PN) and another required surgical intervention for a perinephric haematoma (IR). Conclusion IR obtained larger samples and number of glomeruli, but the overall adequacy for native kidney biopsies was good using both perpendicular and tangential techniques, with similar low rates of significant complications.
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