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Multicenter Study
. 2018 Nov 27;19(1):339.
doi: 10.1186/s12882-018-1131-y.

Beyond dialysis decisions: a qualitative exploration of decision-making among culturally and linguistically diverse adults with chronic kidney disease on haemodialysis

Danielle Marie Muscat  1 , Roshana Kanagaratnam  2 , Heather L Shepherd  3 , Kamal Sud  4   5   6 , Kirsten McCaffery  7   3   8 , Angela Webster  2   6
Affiliations
Multicenter Study

Beyond dialysis decisions: a qualitative exploration of decision-making among culturally and linguistically diverse adults with chronic kidney disease on haemodialysis

Danielle Marie Muscat et al. BMC Nephrol. .

Abstract

Background: To 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.

Methods: Semi-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.

Results: Interviews 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.

Conclusion: Without 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.

Keywords: Chronic kidney disease (CKD), culturally and linguistically diverse (CALD) patients, haemodialysis; Decision making; Health literacy; Shared decision-making.

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Conflict of interest statement

Ethics approval and consent to participate

Ethical approval for this study was granted by Nepean Blue Mountains Local Health District Human Research Ethics Committee. Written informed consent was obtained from each participant prior to commencing the interview.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Steps of Framework Analysis
Fig. 2
Fig. 2
Preference for making the dialysis modality decision
See this image and copyright information in PMC

References

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