Dataset Information

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

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.

SUBMITTER: Muscat DM

PROVIDER: S-EPMC6258454 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Muscat Danielle Marie DM Kanagaratnam Roshana R Shepherd Heather L HL Sud Kamal K McCaffery Kirsten K Webster Angela A

BMC nephrology 20181127 1

<h4>Background</h4>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 ...[more]

PMID: 30482170

Similar Datasets

Project description:BackgroundOral healthcare is paramount and inextricably linked to well-being. Yet, the evidence indicates that culturally and linguistically diverse (CALD) migrant communities have unequal access to mainstream dental services due to several barriers. The purpose of this study was to investigate the oral healthcare experiences, attitudes and barriers to oral healthcare utilisation in CALD mothers.MethodsA qualitative study with semi-structured interviews was conducted within a social constructivism epistemology. CALD mothers who identified as non-English speaking, foreign country born, with a child under 12, were recruited though purposive snowball sampling. Questions probed oral healthcare experiences, barriers, enablers, and attitudes. Verbatim typed transcripts were thematically analysed using grounded methodology.ResultsThirty-three CALD mothers participated; twenty from India, five from Fiji, four from China, two from Nepal and one each from Israel and Macedonia. Languages included Cantonese, Fiji-Hindi, Gujrati, Hebrew, Hindi, Kannada, Mandarin, Maharashtrian, Macedonian, Nepalese, Punjabi, Sanskrit, Telegu and Urdu. Cost was the foremost barrier to oral healthcare services, followed by Confidence in quality care for the provision of services and treatment. Confusion in navigating a public and private healthcare system was highlighted and Competing priorities took precedence. Complacency referred to 'no need' or lack of urgency in dental care. Subsequently, dental hesitancy (superordinate theme) described the patterning of data as comprising the five 'C' factors and was theorised as the dental hesitancy phenomenon to explain the occurrence of delay or avoidance in utilising dental care.ConclusionFindings highlight the utility of the dental hesitancy phenomenon unearthed within this study. CALD mothers explained five 'C' dimensions: cost, confidence, confusion, competing priorities and complacency as barriers to accessing timely dental care. Multisectoral collaboration between healthcare systems, universal health coverage and primary sector support is required to address dental hesitancy in CALD mothers. Further, this study contributes to the field of behavioural and social sciences in oral health and augments the literature on dental avoidance.

Project description:BackgroundPregnancy apps are a booming global industry, with most pregnant women in high-income countries now using them. From the perspective of health care and health information provision, this is both encouraging and unsettling; the demand indicates a clear direction for the development of future resources, but it also underscores the importance of processes ensuring access, reliability, and quality control.ObjectiveThis review provides an overview of current literature on pregnancy apps and aims at describing (1) the ways in which apps are used by women, in general, and by those of a culturally and linguistically diverse (CALD) background; (2) the utility and quality of information provided; and (3) areas where more research, development, and oversight are needed.MethodsWe chose a narrative review methodology for the study and performed a structured literature search including studies published between 2012 and 2017. Searches were performed using MEDLINE, EMBASE, and CINAHL databases. Studies were identified for inclusion using two separate search criteria and strategies: (1) studies on pregnancy apps and pregnant women's use of these apps and (2) studies on CALD pregnant women and their use of technology for accessing information on and services for pregnancy. Overall, we selected 38 studies.ResultsWe found that pregnancy apps were principally used to access pregnancy health and fetal development information. Data storage capability, Web-based features or personalized tools, and social media features were also popular app features sought by women. Lower rates of the pregnancy app uptake were indicated among lower-income and non-English-speaking women. Preliminary evidence indicates that a combination of technological, health literacy, and language issues may result in lower uptake of pregnancy apps by these groups; however, further investigation is required. A marked limitation of the health app industry is lack of regulation in a commercially dominated field, making it difficult for users to assess the reliability of the information being presented. Health professionals and users alike indicate that given the choice, they would prefer using pregnancy apps that are relevant to their local health care context and come from a trusted source. Evidence indicates a need for greater health professional and institutional engagement in the app development, as well as awareness of and guidance for women's use of these resources.ConclusionsThis is the first review of pregnancy app use, types of information provided, and features preferred by pregnant women in general and by those of a CALD background in particular. It indicates the demand for access to accurate information that is relevant to users, their community, and their associated health services. Given the popularity of pregnancy apps, such apps have enormous potential to be used for the provision of accurate, evidence-based health information.

Project description:BackgroundHealth care systems have become increasingly more reliant on patients' ability to navigate the digital world. However, little research has been conducted on why some communities are less able or less likely to successfully engage with digital health technologies (DHTs), particularly among culturally and linguistically diverse (CaLD) populations.ObjectiveThis systematic review aimed to determine the barriers to and facilitators of interacting with DHTs from the perspectives of CaLD population groups, including racial or ethnic minority groups, immigrants and refugees, and Indigenous or First Nations people.MethodsA systematic review and thematic synthesis of qualitative studies was conducted. Peer-reviewed literature published between January 2011 and June 2022 was searched across 3 electronic databases. Terms for digital health were combined with terms for cultural or linguistic diversity, ethnic minority groups, or Indigenous and First Nations people and terms related to barriers to accessing digital technologies. A qualitative thematic synthesis was conducted to identify descriptive and analytical themes of barriers to and facilitators of interacting with DHTs. Quality appraisal was performed using the Mixed Methods Appraisal Tool.ResultsOf the 1418 studies identified in the electronic search, a total of 34 (2.4%) were included in this review. Half of the included studies (17/34, 50%) were conducted in the United States. There was considerable variation in terms of the CaLD backgrounds of the participants. In total, 26% (9/34) of the studies focused on Indigenous or First Nations communities, 41% (14/34) were conducted among ethnic minority populations, 15% (5/34) of the studies were conducted among immigrants, and 18% (6/34) were conducted in refugee communities. Of the 34 studies, 21 (62%) described the development or evaluation of a digital health intervention, whereas 13 (38%) studies did not include an intervention but instead focused on elucidating participants' views and behaviors in relation to digital health. From the 34 studies analyzed, 18 descriptive themes were identified, each describing barriers to and facilitators of interacting with DHTs, which were grouped into 7 overarching analytical themes: using technology, design components, language, culture, health and medical, trustworthiness, and interaction with others.ConclusionsThis study identified several analytic and descriptive themes influencing access to and uptake of DHTs among CaLD populations, including Indigenous and First Nations groups. We found that cultural factors affected all identified themes to some degree and that cultural and linguistic perspectives should be considered in the design and delivery of DHTs, with this best served through the inclusion of the target communities at all stages of development. This may improve the potential of DHTs to be more acceptable, appropriate, and accessible to population groups currently at risk of not obtaining the full benefits of digital health.

Project description:Purpose: Health care disparities exist for people from culturally and linguistically diverse (CALD) communities. Addressing the cultural competence of health care providers could limit these disparities. The aim of this study was to improve cultural knowledge of and humility regarding pain in a CALD community. Method: This interpretive description qualitative study used focus group discussions (FGDs) to generate ideas about how South Asian culture could influence how health care providers manage pain. A total of 14 people with pain and of South Asian background (6 women and 8 men, aged 28-70 y) participated. Two investigators independently analyzed the data. This process involved repeatedly reading the transcripts, then manually sorting the key messages into categories. The investigators compared their categorizations and resolved differences through discussion. Next, similar categories and concepts were grouped into ideas (potential themes). These ideas, along with supporting categories and verbatim quotes, were presented to the full research team for feedback. After compiling the feedback, the ideas formed the thematic representation of the data. Results: The data from the FGDs revealed how pain management could be culturally adapted. The FGDs generated four themes about South Asian cultural perspectives that could influence the pain management experience for people living with pain: (1) cultural and linguistic impediments to communication, (2) understanding of pain in terms of the extent to which it interferes with function and work, (3) nurturing or personal attention as a marker of good care, and (4) value attributed to traditional ideas of illness and treatment. Conclusion: This study demonstrates how engaging with CALD people living with pain can lead to improved cultural knowledge and humility that can form the basis for adapting pain management. Through this process, it is more likely that a meaningful and client-centred pain management plan can be developed.

Project description:ObjectiveTo explore the psychological, social and financial outcomes of COVID-19-and the sociodemographic predictors of those outcomes-among culturally and linguistically diverse communities in Sydney, Australia.DesignCross-sectional survey informed by the Framework for Culturally Competent Health Research conducted between March and July 2021.SettingParticipants who primarily speak a language other than English at home were recruited from Greater Western Sydney, New South Wales.Participants708 community members (mean age: 45.4 years (range 18-91)). 88% (n=622) were born outside of Australia, 31% (n=220) did not speak English well or at all, and 41% (n=290) had inadequate health literacy.Outcome measuresThirteen items regarding COVID-19-related psychological, social and financial outcomes were adapted from validated scales, previous surveys or co-designed in partnership with Multicultural Health and interpreter service staff. Logistic regression models (using poststratification weighted frequencies) were used to identify sociodemographic predictors of outcomes. Surveys were available in English or translated (11 languages).ResultsIn this analysis, conducted prior to the 2021 COVID-19 outbreak in Sydney, 25% of the sample reported feeling nervous or stressed most/all of the time and 22% felt lonely or alone most/all of the time. A quarter of participants reported negative impacts on their spousal relationships as a result of COVID-19 and most parents reported that their children were less active (64%), had more screen time (63%) and were finding school harder (45%). Mean financial burden was 2.9/5 (95% CI 2.8 to 2.9). Regression analyses consistently showed more negative outcomes for those with comorbidities and differences across language groups.ConclusionCulturally and linguistically diverse communities experience significant psychological, social and financial impacts of COVID-19. A whole-of-government approach is needed to support rapid co-design of culturally safe support packages in response to COVID-19 and other national health emergencies, tailored appropriately to specific language groups and accounting for pre-existing health disparities.

Project description:AimTo describe the cumulative incidence of child protection (CP) system contact, maltreatment type, source of reports to age 7 years, and socio-demographic characteristics for culturally and linguistically diverse (CALD) Australian children.MethodsWe used CP, education, health, and birth registrations data for children followed from birth up to age 7 from the South Australian Better Evidence, Better Outcomes, Linked Data (SA BEBOLD) platform.ParticipantsSA born children enrolled in their first year of school from 2009 to 2015 (n = 76 563). CALD defined as non-Aboriginal or Torres Strait Islander, spoken language other than English, Indigenous or Sign, or had at least one parent born in a non-English speaking country.Outcomes measuresFor CALD and non-CALD children, we estimated the cumulative incidence (risk) of CP contacts up to age 7, relative risk and risk differences for all levels of CP contact from notification to out-of-home care (OOHC), primary maltreatment type, reporter type, and socio-economic characteristics. Sensitivity analyses explored different population selection criteria and CALD definitions.ResultsBy age 7, 11.2% of CALD children had 'screened-in' notifications compared to 18.8% of non-CALD (risk difference [RD] 7.6 percentage points (95% confidence interval: 6.9-8.3)), and 0.6% of CALD children experienced OOHC compared to 2.2% of non-CALD (RD 1.6 percentage points (95% confidence interval: 1.3-1.8)). Emotional abuse was the most common substantiated maltreatment type for CALD and neglect for non-CALD. Among both groups, the most common reporter sources were police and education sector. Socio-economic characteristics were broadly similar. Sensitivity analyses results were consistent with primary analyses.ConclusionBy age 7, CALD children had lower risk of contact with all levels of CP. Estimates based on primary and sensitivity analyses suggested CALD children were 5-9 percentage points less likely to have a report screened-in, and from 1.0 to 1.7 percentage points less likely to have experienced OOHC.

Dataset Information

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

Background

Methods

Results

Conclusion

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets