Creating safer cancer care with ethnic minority patients: A qualitative analysis of experiences of cancer service staff

doi:10.21203/rs.3.rs-3285670/v1

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Research Article

Creating safer cancer care with ethnic minority patients: A qualitative analysis of experiences of cancer service staff

https://doi.org/10.21203/rs.3.rs-3285670/v1

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published 30 Jan, 2024

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Introduction

Effective consumer engagement practices can enhance patient safety. This is important for consumers from ethnic minority backgrounds who are exposed to increased risk of patient safety events. Using the Systems Engineering Initiative for Patient Safety (SEIPS) model, this study explored staff experiences of creating opportunities for engagement with consumers from ethnic minority backgrounds to contribute to their cancer care safety.

Method

A qualitative study was conducted using semi-structured interviews with cancer service staff from four cancer services across two states in Australia. Purposive sampling was used to recruit healthcare staff from diverse range of professions. Data was analysed using the Framework Analysis method.

Results

Fifty-four interviews were conducted with healthcare staff. Analysis of the qualitative interview data identified enablers and associated challenges that contributed to creating shared understanding between consumers and staff of the information, processes, expectations and problems arising in care. Enablers and challenges are reported in relation to four themes: (1) consumer- service provider dyad; (2) resources to support consumer engagement for safety; (3) organisational and policy levers; and (4) formal tasks incorporate consumer engagement more readily than informal interactions.

Conclusion

The availability of infrastructure and resources to support communication with consumers from ethnic minority backgrounds was limited to specific tasks across the cancer care continuum. Strategies implemented by health services to foster effective communication during formal interactions now need expansion to support and create conditions for effective consumer engagement during informal and everyday care tasks. Use of innovative language support tools and cultural considerations are required at service and system level to support consumer engagement in all type of care interactions.

Public and patient involvement

This study was embedded within a larger project that included a consumer investigator and was guided by a consumer advisory group (CAG). These consumer team members have lived experience of cancer and are from diverse ethnic backgrounds. The CAG members provided feedback on the draft interview guide and participant information for this study.

Traditionally, patient safety has been thought of as an absence of preventable harm during the process of care(1); but can also be conceptualised as achieving the safest possible care in the available circumstances(2). Consumers from ethnic minority backgrounds accessing healthcare are often exposed to higher risk of patient safety events such as medication related harm and healthcare acquired infections compared to those of non-ethnic minority backgrounds(3). Many factors contribute to their increased vulnerability to safety events including lack of meaningful engagement in their care(3). Patient safety for ethnic minority patients is of particular importance in cancer services where possibility of preventable harm remains high(4, 5). A retrospective review of 300 medical records of patients from ethnic minority backgrounds accessing two Australian cancer services identified that almost one third of the medical records (104/300, 34.6%) had at least one safety event documented(6).

Healthcare is a complex socio-technical system that involves constant interactions between humans, machines, environments, work activities and organisational structures and processes(7). Consumers, defined as patients and their family or support person/s(8), are an integral part of this socio-technical system(9). By creating conditions that facilitate consumer engagement in care, consumers can co-create safer care practices(10, 11). Consumer engagement, defined as meaningful involvement of consumers in healthcare decision making(12), has potential to reduce errors, increased shared decision-making and consumer understanding of care, improve health outcomes and lower healthcare costs(13). Consumer engagement can act as a feedback loop informing practice and care improvement to enhance patient safety(9, 14, 15). The World Health Organization (WHO) Global Patient Safety Action Plan (2021–2030) recognises consumers engagement in their care as one of the key strategies to reduce harm to the patient and provide safe and respectful care(16). Healthcare staff can facilitate consumer engagement by sharing information with consumers about their care and encouraging them to ask questions(17–19). However, some of these strategies such as encouraging to ask questions may not be suitable for consumers from ethnic minority backgrounds(20).

In a cancer care system, effective consumer engagement practices can enhance patient safety as consumers can identify and report issues relating to unsafe care (19, 21–24). To date, research with consumers from ethnic minority backgrounds has identified various factors influencing consumer engagement across different levels of healthcare decision-making. At the direct care level, education, experience, language proficiency and diversity of cultural background shapes how consumers from ethnic minority backgrounds are engaged in their care(25). At the service level, building staff and consumer capacity and providing culturally sensitive care have been highlighted, but there is limited knowledge and understanding of specific mechanisms through which consumer engagement can be realised for consumers from ethnic minority backgrounds (12). System level policies on use of professional interpreters may address some of the communication barriers but may not address the nuanced inter and intra-ethnic variations that exist within ethnic minority groups to facilitate consumer engagement(25).

Health systems models enable us to consider the factors that impact consumer engagement and safety in cancer services(9, 26). Delivery of safe care could be enhanced when working with consumers from ethnic minority backgrounds by establishing the various system and service components that influence engagement. The Systems Engineering Initiative for Patient Safety (SEIPS) model is widely used to explore how health systems and services create safety in care and has been applied in diverse care settings(26). Application of the SEIPS model could enhance our understanding of how safety is created and maintained by increasing consumer engagement in care(9, 14, 15). Applying the SEIPS model to understand experiences of cancer service staff can help identify the conditions that foster consumer engagement for safety. This study was designed and conducted to explore staff experiences of creating opportunities for consumer engagement with consumers from ethnic minority backgrounds to contribute to their cancer care safety.

This study is reported in accordance with the Consolidated Criteria for Reporting Qualitative Studies guidelines(Supplementary File A)(27).

Ethics Approval

Ethics approval was granted by a National Health and Medical Research Council accredited Human Research Ethics Committee (Reference - 2020/ETH00965)

Design

A cross-sectional qualitative descriptive study was conducted using semi-structured interviews with cancer service staff.

Setting

Four cancer services, two in the state of New South Wales (NSW) and two in the state of Victoria (VIC) in Australia were selected. VIC and NSW are two of the top three states that have highest proportion of overseas-born population(28). The four cancer services served substantial population from diverse ethnic minority backgrounds(29). All four cancer services provided chemotherapy, radiotherapy, immunotherapy, haematology and palliative care services across inpatient, day therapy and outpatient cancer care settings in metropolitan areas within large cities.

Recruitment

Purposive sampling was used to recruit a range of eligible cancer service staff (clinicians, managers and administrative staff) across the four services. Eligible participants had worked at the participating cancer service as a permanent employee (full-time or part-time) for more than six months. Healthcare staff in casual roles were excluded as the nature of casual employment may decrease awareness of service specific policies and procedures. Diversity in professional roles was sought to enable collection of experiences from staff contributing to different aspects of care. The participating site-specific collaborators distributed study advertisements to staff via their internal networks. Interested staff contacted the research team directly. Eligibility was confirmed by phone or email, and informed consent obtained prior to conducting the interviews.

Data Collection

Semi-structured interviews were conducted by three researchers (AC; BN; KJ) either face-to-face, online or via telephone. Researchers (AC; BN; KJ) did not have any professional relationship with staff interviewed. Interviews took place from March 2021 to September 2022 and lasted between 30 and 50 minutes. Semi- structured interviews were selected as a suitable and flexible approach to data collection to obtain in- depth data and pursue other interesting lines of enquiry as they arose(30). An interview guide was developed and used to conduct the semi-structured interviews. The interview guide was developed using the experienced-based co-design toolkits(31, 32) incorporating experiences of the research team in conducting qualitative research and feedback from the members of the consumer advisory group associated with the research project that this study was part of. This guide covered three main topics: (i) safety issues that impact consumers from ethnic minorities in cancer care; (ii) staff perceptions and experiences of their ability to effectively engage with consumers from ethnic minorities; and (iii) strategies used and support available to staff to enable the engagement of ethnic minority consumers in their care to enhance their safety. After verifying eligibility criteria, a mutually agreeable time was established by the researcher with the potential participant along with confirmation of the mode of the interview (face to face, via telephone or online). Written consent to participate was obtained prior to the interview with verbal consent also confirmed at interview commencement. Interviews were recorded using an audio recorder and the recording stored in a password protected secure Cloud based location accessed only by the research team.

Data Analysis

Interview audio recordings were transcribed verbatim by a professional transcriber. Data were both deductively and inductively analysed using a Framework Analysis method grounded in the SEIPS 3.0 Model (14, 33). The five domains of the SEIPS model; person, task, tools and technology, environment, and organisation constituted the elements of the framework for analysis. The data was first deductively analysed and coded under these five categories. Following this, an inductive approach was used and the resulting themes were formed. After transcription, two Research Fellows with clinical backgrounds - one physiotherapist (AC) and one social worker (BN), familiarised themselves with the data by re-reading the transcripts several times. Following this, ten transcripts were independently coded by the same two researchers. The two researchers met to compare their findings and develop a working analytical framework. The remaining transcripts were then coded by the two same researchers using the categories and codes in the working analytical framework. This was an iterative process whereby the two researchers met weekly to discuss findings and update the working analytical framework as required. Findings were also discussed with the principal researcher (RH) throughout this process in separate weekly meetings and the analytical framework was refined. A Framework Matrix charting the final categories and codes (SUPPLEMENTARY FILE B) was developed using Microsoft Excel Spreadsheet. Subset of transcripts were reviewed by other team members (EM, KJ, R, HS, DL and ABS) and the findings discussed as a group. Following this, themes were identified, with preliminary themes defined and refined between the research team. Final themes were checked by all research team members. This process addressed rigour during data analysis. Participant codes were generated with ‘Site#’ representing the respective cancer service and ‘P#’ representing the participant and their unique number followed by the profession category.

Fifty-four interviews were completed with a range of healthcare staff across the four cancer services (15 interviews each at the two cancer services in NSW; 10 and 14 at cancer services in VIC respectively). Occupations were categorised into administrative, allied health, nursing and medical staff to maintain participants' anonymity. Seventeen nurses (nursing unit managers, care coordinators, nurse leads and clinical nurses), 16 medical staff (oncologists, radiologists and surgeons), 11 administrative staff (reception staff, health managers and operations managers) and 9 allied health staff (social workers, speech pathologists, wellness staff and genetic counsellors) participated.

Analysis of the qualitative interview data revealed that the enablers and challenges to co-create safety with consumers from ethnic minority backgrounds transcended through various components of the SEIPS model. Enablers and challenges are reported in relation to four themes that were developed with reference to the five components of the SEIPS model: (1) consumer- service provider dyad; (2) resources to support consumer engagement for safety; (3) organisational and policy levers; and (4) formal tasks incorporate consumer engagement more readily than informal interactions. Enablers collectively supported the co-creation of safer care by creating shared understanding between consumers and staff of the information, processes, expectations and problems arising in care. However, various challenges were also identified whereby these enablers did not fully created the conditions that supported shared understanding. ‘Shared understanding’ was therefore identified as an underpinning theme.

Consumer- service provider dyad

Consumer-service provider dyad as a component of SEIPS model comprised three main categories; person (such as interpreters, bilingual staff and support person(s)) that supported this dyad by providing language support, consumers beliefs of cancer and their attitude to engagement, and trust and relationship between consumers and respondents. The consumer-service provider dyad enabled certain tasks that contributed towards enhancing shared understanding of instructions/care processes but also identified challenges, particularly associated with perception of cancer, associated treatment and trust between respondents and consumers.

1.1 Person (interpreters, bilingual staff and family/support person)

Interpreters, bilingual staff and family/support person enabled consumer engagement for co-creating safety by promoting cross-cultural communication in various capacities, but challenges were also identified with their use. Interpreters were more readily available and used for tasks that were deemed high risk and planned (consent for treatment, first education session and regular appointments with oncologists/haematologists) as compared to unplanned tasks (everyday care interactions while admitted in day care or inpatient, ad-hoc appointments). The cumbersome booking system, not being able to source an interpreter in a particular dialect and unplanned and shorter duration of the interactions impacted interpreter booking and usage.

Just today I’ve had to (use family) … , because we just couldn’t (book the interpreter). SiteA_P2_Nurse

There’s a lot of different dialects, and sometimes I’ve had issues where patients have not been of the same dialect in terms of the language. SiteB_P4_Medical

For some interactions where interpreters were used, concerns were raised about interpreters providing incomplete information to consumers and interpreters’ comfort with translating some information due to cultural factors.

I had said to her, you really can't afford to lose any more weight. And he interpreted, you must not gain weight. SiteD_P5_AlliedHealth

Unfortunately, the interpreter (Arabic speaking) that I got was a female, and she was very uncomfortable talking about it (erectile dysfunction). Site B_P2_Nurse

When interpreters were unavailable, respondents sometimes relied on bilingual staff or support person for interpretation as an informal arrangement. Bilingual staff were other health professionals in diverse roles working at the cancer services that also spoke a language other than English and providing language support was not their primary role. Respondents felt that bilingual staff were more impartial than support person/s when interpreting information and had better medical understanding, these were considered advantageous. However, managerial staff raised concerns in the context of patient safety as the language proficiency of bilingual staff in languages other than English was not assessed.

We do use staff occasionally, which I know we’re not supposed to but to - just to translate very general things. SiteA_P12_Nurse

it can pose risks as well, because there’s only the two people involved... we’ve not tested the language of the health professional or anything. SiteA_P8_Administrative

Engagement with family or support person/s was often encouraged for their role as a communicator to raise concerns on behalf of the patient and to relay information to the patient outside of the immediate care appointments/sessions. This role was contingent on support person/s also able to speak and understand English fluently. But concerns were raised regarding completeness and accuracy of information translation when family or support person were used for interpretation.

there is someone who is a close relative or friend of theirs that does speak English and … and they know who to call if the patient is unwell or has any concerns at home. SiteA_P5_Nurse

they might express something to their family members later on when they’ve gone home and then we might get a call from one of the family members. SiteB_P6_Nurse

1.2 Consumers beliefs of cancer and attitude to engagement

Beliefs and attitudes towards cancer as an illness and related treatment influenced use of resources to support consumer engagement. Perception of cancer as a shameful disease was identified as a barrier as it impacted use of interpreters, as often consumers did not want the wider community to know they had cancer. This was particularly identified for smaller ethnic minority communities. Perception of cancer as a terminal illness also impacted ability of respondents, especially nursing and allied health staff, to engage with patients given the requests made by family or support person/s to not reveal the diagnosis to the patient.

A patient didn't want an interpreter, because they said their community is very small and they don't want people they know to know that they're sick SiteA_P6_AlliedHealth

Culturally the family didn’t want to tell the patient. SiteC_P3_Medical

Consumers’ attitudes to engagement were also important as respondents noted that some consumers would want cancer service staff to make decisions for them as staff were considered experts in the field.

Culturally some people may not want to have that same level of decision-making in their care. They might want someone to say, no, this is the decision… SiteA_P8_Administrative

1.3 Building trust and knowing more about consumers

Relationships built on trust and knowing more about consumers were highlighted by respondents as enablers for supporting consumer engagement with consumers from ethnic minority backgrounds. Building trust and rapport allowed consumers to feel comfortable to be able to ask questions or raise concerns with more time identified as an essential factor to develop trust.

I think with rapport and trust means that they'll often ask me random questions that aren't related to my role because they trust me and know that I'll find out for them. SiteD_P5_AlliedHealth

Staff expressed interest in learning more about the beliefs and perspectives of their patients as individuals to achieve effective engagement. Respondents verbalised the importance of avoiding monoculturalism and viewing patients as individuals to develop personalised strategies.

it’s really important not to believe that there’s a monocultural approach. SiteA_P7_Medical

Most language diverse patients also have cultural diversity as the added complexity and they tend to have different health views … and that requires a separate discussion on top of the language barrier. SiteC_P5_Medical

2. Resources (tools and technologies) and techniques to support consumer engagement for safety.

Respondents identified two key categories of resources used to bridge the language discordance and to create common understanding of the care processes and instructions. Resources included media (translated printed/video/audio resources) and technologies (translator applications).

2.1 Media (print, video or audio)

Approved translated printed resources were readily available for formal tasks such as the education session (providing general information about cancer treatment) and for high-risk conditions (e.g., information on management of febrile neutropenia). These resources were often developed by and available through either cancer specific health agencies/departments at service/state/federal level. However, there was an overall lack of service level resources to support cancer specific tasks and care processes. Respondents relied on self-created cheat sheets or diagrams (such as describing the care task or asking question) but acknowledged that these were not checked for accuracy. Respondents also pointed towards general lack of evaluation of resources in the context of patient safety.

We would find that .. and print off all the pictures that related so that we would know what they’re pointing at and they would see it in their language. SiteC_P6_Nurse

Yeah, I can't say we've fully evaluated that (translated information) in that particular setting. SiteA_P11_AlliedHealth

2.2 Technological Applications

Respondents, especially nursing and allied health staff, commented on the use and availability of formal (Culturally and Linguistically Diverse (CALD) Assist) and informal applications (Google Translator) to support communication. The key findings regarding CALD Assist application were that it was not evenly implemented across services, some staff were aware of and that its focus was on general tasks.

we’re just slowly pushing that (CALD Assist) through the hospital.., in some places it was working really well, and others, it’s taking a bit of time to get it implemented. SiteA_P8_Administrative

We do have an app on the ward (CALD Assist)...I don’t think it’s widely used... There’s only so - a certain amount of languages and a certain amount of phrases in there. SiteD_P12_Nurse

While the service level policies did not support use of Google Translator (or similar translator applications), respondents noted frequent use of these applications by consumers and staff.

More staff are using Google Translate. SiteD_P12_Nurse

3. Organisational and policy levers

The ability of service level policies and procedures to enable engagement with ethnic minority consumers was directly related to the external system level requirements and priorities. Senior managers provided examples of how system level requirements shaped local practice, such as the requirement for use of interpreters for new consultations and during consent processes but not for a range of other tasks and interactions across the Australian health system. Policy directives of staff training in cultural competency had resulted in cancer services implementing various cultural training programs but respondents noted the limitation of such programs to cover the range of cultural practices to enable staff to know more about each culture.

There is a policy on interpreters must be involved in all new patient consults… that are relating to their treatments, consent forms, so when they're consenting to treatment. SiteB_P1_Administrative

Emerging priority for consumer engagement in healthcare decision-making was also noted by managers driving efforts at local level to enhance engagement with consumers generally. However, frontline clinician respondents verbalised that absence or lack of necessary adaptation of current processes for consumer engagement may limit involvement of consumers from ethnic minority backgrounds in safer care delivery – for example, lack of adaption of the current appointment reminder system at a cancer service to meet the needs of low-English proficient consumers can result in appointment cancellations or inappropriate discharge from care.

I can see there’s a lot more of discussion around patient-centred care, engaging patients in their care, partnership in care. SiteA_P8_Administrative

COVID-19 also shaped system level practice requirements that in turn influenced opportunities for consumer engagement. Implementation of Covid-19 related restrictions meant that interpreters were available through telephone bookings and support person/s was not able to accompany patient during their scheduled appointment and day care treatment sessions.

Respondents noted that doctors got interpreters more often over the phone than nursing or allied health staff. The wait time for phone interpreters was identified as a consistent issue across the services with respondents noting it being of lower quality than face-to-face interpreters. Some allied health and nursing staff verbalised that often phone interpreters were not suitable for their tasks – for example, asking for a particular question that required pointing or describing the physical task. Restrictions for family/support person/s often meant that respondents could not rely on them to confirm the symptoms or relay important patient safety related information.

The doctors get the interpreters more so than we do, only because with COVID, it’s been really hard with interpreters. SiteD_P14_Nurse

A lot of it because of COVID is done not face-to-face, so that brings up some barriers… because you don’t know what you’re saying is being translated effectively. SiteB_P10_Nurse

4. Formal tasks incorporate consumer engagement more readily than informal interactions.

Ultimately the type and the degree of formality associated with a clinical or non-clinical task was identified as influencing opportunities for consumer engagement to improve patient safety. Formal tasks enabled opportunities for engagement with consumers from ethnic minority backgrounds because they were more often supported by structures and resources available in the cancer service. Examples of formal tasks include the initial appointment, follow-up scheduled appointments, initial patient education sessions prior to chemotherapy or radiotherapy, and obtaining consent for treatment and/or clinical trials.

Formal tasks required healthcare staff to engage with their patients (and sometimes support person/s) in a structured manner to provide necessary information and ensure patient’s understanding of the instructions provided. Respondents described using interpreters and other resources such as translated printed information sheets to support communication.

Definitely we run an education session...and if they spoke a language other than English as their first language then we would arrange for an interpreter. SiteA_P5_Nurse

When we identify someone that’s CALD, we actually book interpreters for their first day talks, their first setup on the treatment machine if they speak zero English. SiteC_P6_Nurse

Respondents also verbalised using techniques such as speaking slowly, asking follow-up questions, teach-back and repeating the information during these formal tasks to engage with patients and ensure their understanding of care. A key factor that supported engagement in these types of tasks was the ability to have planned communication.

I think it's important just to take it a bit slower, make sure that what we're saying to them, they are understanding,…Then we usually have a question time. SiteA_P2_Nurse

Would you mind telling me if – repeating back what I’ve said so I know that you’ve heard me. SiteB_P10_Nurse

Whilst formal tasks in service provision enabled engagement to create safer care, engaging ethnic minority patients during Informal or spontaneous tasks completed in day-to-day care was described as more challenging. Informal tasks described included responding to spontaneous requests during patient hospital admission (such as asking about pain or other symptoms), follow-up treatments sessions in radiotherapy and chemotherapy day care (such as checking for side effects before the start of the treatment session), unscheduled visits and transitions of care (such as booking appointments). In such tasks, cultural and communication support were less readily available to staff and patients, with effective engagement harder to achieve as a result.

After the first session or so, you may not be able to get hold of interpreters and there’s a limited supply and resource of them. SiteB_P3_Nurse

It’s hard to do ward rounds when patients are in-patients with interpreters. SiteC_P4_Medical

Something as simple as the doctor giving them a form to go and have a follow up mammogram. If they don’t understand it .... it could impact right down to their morbidity outcome as well. SiteB_P1_Administrative

By applying the SEIPS model, this study identified factors that together influence opportunities for engagement with consumers from ethnic minority backgrounds to enhance their safety in the context of cancer services. Service and system level features were identified that influenced staff ability to engage effectively, which predominantly focused on supporting language needs. The degree of formality relative to a healthcare task (e.g., informed consent vs. spontaneous conversation) was associated with provision of resources to support engagement. Wider service and system-level policies were key environmental and contextual factors that influenced engagement. Person level characteristics such as cultural beliefs, attitudes towards engagement and trust influenced whether someone could engage, desired engagement or required support to engage. Ultimately, where opportunities for consumer engagement were enabled (such as through use of interpreters or translated resources) an environment that promoted shared understanding of care processes and goals between clinicians and consumers through strong engagement could be achieved. This study suggests that currently, staff and consumers also face several challenges that inhibit engagement opportunities.

Evidence to date has demonstrated the importance of understanding how safe healthcare is created from a systems perspective. International policy organisations have highlighted the importance of availability of resources at system and service levels that consistently support consumer engagement for patient safety(16, 34–36). For consumers from ethnic minority backgrounds, inequalities exist in terms of support structures (interpreter availability, time allocated for consultation) that inhibit their ability to access opportunities for engagement that are being steadily created for the general population(3, 12, 25). There is still a long way to go for consumers to gain strong engagement generally, but for CALD communities this challenge is pronounced. The analysis did not clearly identify physical environment as a factor for consumer engagement despite past earlier research suggesting otherwise(37).

For consumers from ethnic minority backgrounds, availability of language support (in the form of interpreters) is imperative for effective consumer-provider communication(38, 39). This study identified that often nursing and allied health staff reported communicating with consumers from ethnic minority backgrounds during everyday care interactions were not adequately resourced as interpreters were not considered feasible to use or were not available. This finding is important as often during such informal everyday care communications, consumers report safety event they might have experienced, raise concerns or ask questions. While respondents verbalised using bilingual staff occasionally to fill this gap, there is a lack of evidence regarding the use of bilingual/bicultural staff in the context of patient safety.

Much of the discussion generated through the study focused on language, and cultural factors that influenced engagement were less well understood. The issue of focus on language to assist with consumer-provider communication, whilst welcomed, does not explicitly address the cultural needs of the ethnic minority population. Links between culture, language and patient safety have been explored previously(3, 25, 40). An Australian focus group study with participants from four different ethnic minority population groups identified that cultural factors along with health literacy, English-language ability and health condition impact on consumer engagement(25). Cultural beliefs about illness and treatment and incongruence of these beliefs between consumers from ethnic minority backgrounds and healthcare providers can also impact consumer engagement for safety(3). Overlooking this link between culture, language and safety may also limit the efficacy of system level efforts in place to enhance patient safety for ethnic minority populations(3, 40)

IMPLICATIONS

Under the right conditions, there are tools available to engage with people from ethnic minority backgrounds to enhance their safety. The current gaps are around systematising these conditions and resources to consistently support safer care in informal and disease specific care interactions. This study has two main implications; firstly, cultural considerations during development of resources/strategies to support cross-cultural communication and secondly, to support everyday care communication with use of technology and patient navigators.

Ethnic minority populations are diverse, with considerable intra- and inter-ethnic variations(25). It has been identified that specific socio-cultural beliefs of cancer (such as cancer as a shameful or terminal illness) and related treatment require cultural adaptations for strategies developed to support engagement with consumers from diverse ethnic minority groups(41). Particular attention to cultural meaning of words or phrases used in developing and using language specific resources is required(40). Cultural considerations during the development of such resources remains important and can be achieved through meaningful involvement of consumers in resource co-design (3, 40). One such example is the Making it Meaningful instrument co-developed with Mandarin speaking consumers to enhance their medication safety(42). This approach could be used as a guide to develop similar resources with consumers from specific ethnic minority groups in specific settings.

Due to increasing availability of internet and technological innovations, translation applications, such as Google Translate, are being used by staff and consumers from ethnic minority backgrounds(25, 43). However, their lack of accuracy in translation has safety implications(43, 44). A range of health specific translator applications (such as MediBabble, xprompt, CALD Assist and Talk to Me ) that include preset phrases for different health related tasks are now available(44). These applications are considered superior to Google Translate in terms of their accuracy(43). The translation tools used in general care setting may be insufficient given the importance of the specificity of information that needs to be conveyed in cancer care. In Australian context, the CALD Assist application has been tested for its usability and acceptability by nursing and allied health staff in Australian healthcare setting with the studies indicating good acceptability to staff(38, 39). Future cancer specific iteration of the CALD Assist application could be developed but will require caution until further testing is undertaken with consumers from diverse ethnic minority backgrounds.

Studies have established that patient navigation programs are effective in reducing disparity in cancer care outcomes for ethnic minority communities by improving timeliness and access to care(45–47). Patient navigators (culturally trained healthcare staff, lay people or peers) provide a wide range of support such as scheduling and arranging appointments, providing care co-ordination, providing communication coaching and assisting with translation to consumers of cancer services(48) and can assist in enhancing consumer engagement for consumers from ethnic minority backgrounds in their care(49). There is potential for targeted implementation and evaluation of program whereby patient navigators could be trained and used to enable everyday care communications (e.g., day care treatment procedures or inpatient care interactions).

LIMITATIONS

The inclusion of varied healthcare staff from four cancer services across two Australian states provided a comprehensive understanding of a broad range of experiences in a variety of contexts. However, there are certain limitations for transferability of the study findings. As this study was conducted in cancer services, application of findings to settings other than cancer may be limited. Further, as this study only explored staff perspectives, there is a need to explore perspectives of consumers from ethnic minority backgrounds accessing cancer services. This is currently being explore through additional work being conducted. Despite the SEIPS model providing a comprehensive understanding of the range of factors that influence patient safety, some factors that are not linked to patient safety could have been overlooked. Using semi-structured interviews may introduce recall bias as participants rely on retelling their experiences but also provide an opportunity to be reflective.

Facilitating an environment that promotes shared understanding of care processes and goals between clinicians and consumers is vital for strong consumer engagement to enhance safety in cancer care for people from ethnic minority backgrounds. This research identified that the infrastructure and resources to support communication with consumers from ethnic minority backgrounds was limited to specific tasks across the cancer care continuum. Strategies implemented by health services to foster effective communication during formal interactions now need expansion to support and create conditions for effective consumer engagement during informal and everyday tasks. Use of innovative language support tools and cultural considerations are required at service and system level to support consumer engagement in all type of care interactions.

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Acknowledgement

The research team would like to thank the members of the consumer advisory group (Nyan Thit Tieu, Sandie Foreman, Koert Musters, Nadine ElKabbout and Doanh Tang) associated with the CanEngage project for their contribution to this research study and the overall project. The research team would also like to thank the healthcare staff for taking their time to participate in this research.

Funding

This research is funded through NHMRC IDEAs (1180925) and Cancer Australia’s Supporting people with cancer Grant initiative (CA-ITA1819/01) grants.

The content is solely the responsibility of the grant recipient and does not necessarily represent the official views of Cancer Australia.

Ethical Approval

Ethics approval was granted by a National Health and Medical Research Council accredited Human Research Ethics Committee (Reference - 2020/ETH00965).

Data Availability

Access to the research data from this project may be discussed with the lead author or project lead and is subject to appropriate ethical approvals.

Author Contributions

Ashfaq Chauhan and Reema Harrison conceptualised the study. Ashfaq Chauhan, Kathryn Joseph and Bronwyn Newman completed data collection. Data analysis was iterative and involved contribution from all members of the research team. Ashfaq Chauhan drafted the first and subsequent versions of the manuscript incorporating feedback from all authors. All authors approved the final manuscript.

Conflict of Interest

Authors declare no conflict of interest.

Participant Consent

Written consent was obtained from healthcare staff prior to data collection.

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Creating safer cancer care with ethnic minority patients: A qualitative analysis of experiences of cancer service staff

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Abstract

Introduction

Method

Results

Conclusion

Public and patient involvement

Introduction

Methods

Ethics Approval

Design

Setting

Recruitment

Data Collection

Data Analysis

Results

Consumer- service provider dyad

1.1 Person (interpreters, bilingual staff and family/support person)

1.2 Consumers beliefs of cancer and attitude to engagement

1.3 Building trust and knowing more about consumers

2. Resources (tools and technologies) and techniques to support consumer engagement for safety.

2.1 Media (print, video or audio)

2.2 Technological Applications

3. Organisational and policy levers

4. Formal tasks incorporate consumer engagement more readily than informal interactions.

Discussion

IMPLICATIONS

LIMITATIONS

Conclusion

References

Declarations

Supplementary Files

Status:

Journal Publication

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