Codesigning consumer engagement strategies with ethnic minority consumers in Australian cancer services: the CanEngage Project protocol.

INTRODUCTION: Consumer engagement is central to high-quality cancer service delivery and is a recognised strategy to minimise healthcare-associated harm. Strategies developed to enhance consumer engagement specifically in relation to preventing healthcare harm include questioning health professionals, raising concerns about possible mistakes or risks in care and encouraging patients and caregivers to report suspected errors. Patients from ethnic minority backgrounds are particularly vulnerable to unsafe care, but current engagement strategies have not been developed specifically for (and with) this population. Using an adapted approach to experience-based codesign (EBCD) to support the target population, the aim of the project is to codesign consumer engagement interventions to increase consumer engagement and safety in New South Wales and Victorian cancer inpatient, outpatient and day procedure services. METHODS AND ANALYSIS: A mixed-method project will be undertaken at six study sites. Our EBCD approach includes a preparatory phase in which we will provide training and support to the codesign participants, in addition to recruiting and training consumer cofacilitators for the codesign workshops. The project will follow the EBCD process of gathering and synthesising observational data from each cancer service, with interview data from consumers and staff. With the resulting in-depth understanding of the safety threats commonly experienced by ethnic minority consumers in each site, we will work through feedback events and codesign groups with consumers and staff to determine how they can be more involved with their care to minimise the potential for patient harm. Consumer engagement interventions will be coproduced in each of the six participating services that are tailored to the ethnic minority populations served. ETHICS AND DISSEMINATION: Ethics approval has been obtained from the Western Sydney Local Health District Human Research Ethics Committee. The project will provide strategies for ethnic minority consumers to engage with cancer services to minimise healthcare-associated harm that may be applied to diverse healthcare settings.

The safety of health care for ethnic minority patients: a systematic review.

INTRODUCTION: Evidence to date indicates that patients from ethnic minority backgrounds may experience disparity in the quality and safety of health care they receive due to a range of socio-cultural factors. Although heightened risk of patient safety events is of key concern, there is a dearth of evidence regarding the nature and rate of patient safety events occurring amongst ethnic minority consumers, which is critical for the development of relevant intervention approaches to enhance the safety of their care. OBJECTIVES: To establish how ethnic minority populations are conceptualised in the international literature, and the implications of this in shaping of our findings; the evidence of patient safety events arising among ethnic minority healthcare consumers internationally; and the individual, service and system factors that contribute to unsafe care. METHOD: A systematic review of five databases (MEDLINE, PUBMED, PsycINFO, EMBASE and CINAHL) were undertaken using subject headings (MeSH) and keywords to identify studies relevant to our objectives. Inclusion criteria were applied independently by two researchers. A narrative synthesis was undertaken due to heterogeneity of the study designs of included studies followed by a study appraisal process. RESULTS: Forty-five studies were included in this review. Findings indicate that: (1) those from ethnic minority backgrounds were conceptualised variably; (2) people from ethnic minority backgrounds had higher rates of hospital acquired infections, complications, adverse drug events and dosing errors when compared to the wider population; and (3) factors including language proficiency, beliefs about illness and treatment, formal and informal interpreter use, consumer engagement, and interactions with health professionals contributed to increased risk of safety events amongst these populations. CONCLUSION: Ethnic minority consumers may experience inequity in the safety of care and be at higher risk of patient safety events. Health services and systems must consider the individual, inter- and intra-ethnic variations in the nature of safety events to understand the where and how to invest resource to enhance equity in the safety of care. REVIEW REGISTRATION: This systematic review is registered with Research Registry: reviewregistry761.

Beyond translation: Engaging with culturally and linguistically diverse consumers.

BACKGROUND: In the context of an effective consumer engagement framework, there is potential for health-care delivery to be safer. Consumers from culturally and linguistically diverse (CALD) backgrounds may experience several barriers when trying to engage about their health care, and they are not acknowledged sufficiently in contemporary strategies to facilitate patient engagement. METHODS: Four focus group discussions were facilitated by bilingual fieldworkers in Arabic, Mandarin, Turkish and Dari in a district of Sydney, Australia that has a high proportion of CALD consumers. Each group included 5-7 health-care consumers who, using a topic guide, discussed their experiences of barriers and facilitators when engaging with health-care services in Australia. Thematic analysis was undertaken to identify, analyse and report patterns in the data. RESULTS: In all, 24 consumers participated. Six inter-related themes emerged: navigating the health system; seeking meaningful interpretation; understanding and managing expectations; respectful professional care; accessing services; and feeling unsafe. CONCLUSIONS: The incorporation of strategies such as professional interpreters and migrant health workers may go some way to addressing the needs of culturally or linguistically diverse consumers and facilitate communication, but do not sufficiently address the range of barriers to consumer engagement identified in this work. Understanding consumer experience in the context of the complex factors that may be associated with poor engagement and poor outcomes such as health literacy, cultural, educational and linguistic background, and health-care setting or condition, may contribute to better understanding about how to deliver quality health care to these patients.

What is the role of cultural competence in ethnic minority consumer engagement? An analysis in community healthcare.

BACKGROUND: Effective patient engagement has been associated with high quality health care. There is a dearth of evidence around effective engagement with consumers from ethnic minority backgrounds; specifically in relation to the role of cultural competence amongst healthcare professionals in effective engagement with consumers from ethnic minority backgrounds. To address this knowledge gap, we analysed the role of cultural competence in the consumer engagement approaches taken by community healthcare professionals working with consumers from ethnic minority backgrounds. METHODS: Semi-structured individual interviews were conducted with 21 healthcare professionals employed across four community healthcare and affiliated services in four local government areas in Australia. RESULTS: Adopting patient-centric approaches (that seek to understand and be responsive to the patient as an individual) featured as an underpinning theme that transcended other emerging themes. Recognition of diversity within communities and individuals in those communities, all with their own story, was described as pivotal to effective engagement. This was encapsulated in the theme of Cultural standpoints and personal context that contained four further themes of: (1) Build foundations of trust and respect; (2) Diversify communication channels; (3) Generate system, service and community partnerships; (4) Take the time. CONCLUSION: Our findings indicate that cultural competence and effective consumer engagement are closely linked in ethnic minority populations. Embedding cultural competence as a health system, service and professional capability is therefore critical to ensure equitable healthcare quality for consumers from all ethnic backgrounds.

A pilot of an intervention delivered to Chinese- and Spanish-speaking carers of people with dementia in Australia.

There are limited language- and culture-specific support programs for carers of people with dementia living in Australia. A group intervention for use with Chinese and Spanish speakers in the United States was adapted to the Australian context, and a pilot study was undertaken with these 2 communities. The intervention is based on a cognitive behavioral therapy approach and was delivered by bilingual health professionals. The adapted material comprised 7 sessions, spanning 2 hours in duration. All 22 participants completed the Depression Anxiety and Stress Scale-Short form (DASS-21) pre- and postintervention. A significant decrease in depression, anxiety, and stress was observed among Spanish speakers; a significant decrease in depression and anxiety was present among the Chinese speakers. The implications are considered in the context of Australia's changing aged care service system.

Qualitative research on dementia in ethnically diverse communities: fieldwork challenges and opportunities.

Australia, like other ethnically diverse societies, needs to provide culturally appropriate health care to all its citizens. One way of facilitating this is to ensure that health services research adequately reflects the circumstances and needs of culturally and linguistically diverse (CALD) communities within the population. This article discusses the fieldwork phase of a qualitative research project on dementia caregiving in 4 CALD communities in south west Sydney, Australia. Rather than focusing on the study results-which have been published elsewhere-this article presents and discusses crucial fieldwork issues that arose in the conduct of the project, particularly regarding participant recruitment and facilitation of focus groups. In being transparent about some of the difficulties encountered and how these were managed, we offer suggestions for other researchers wanting to include CALD communities in a meaningful way in their research projects.