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Approaches for enhancing patient-reported experience measurement with ethnically diverse communities: a rapid evidence synthesis

International Journal for Equity in Health volume 23, Article number: 26 (2024) Cite this article

Abstract

Background

Patient-reported experience measures (PREMs) are used to drive and evaluate unit and organisational-level healthcare improvement, but also at a population level, these measures can be key indicators of healthcare quality. Current evidence indicates that ethnically diverse communities frequently experience poorer care quality and outcomes, with PREMs data required from this population to direct service improvement efforts. This review synthesises evidence of the methods and approaches used to promote participation in PREMs among ethnically diverse populations.

Methods

A rapid evidence appraisal (REA) methodology was utilised to identify the disparate literature on this topic. A search strategy was developed and applied to three major electronic databases in July 2022 (Medline; PsycINFO and CINAHL), in addition to websites of health agencies in Organisation for Economic Co-operation and Development countries via grey literature searches. A narrative evidence synthesis was undertaken to address the review question.

Results

The review resulted in 97 included studies, comprised 86 articles from electronic database searches and 11 articles from the grey literature. Data extraction and synthesis identified five strategies used in PREM instruments and processes to enhance participation among ethnically diverse communities. Strategies applied sought to better inform communities about PREMs, to create accessible PREMs instruments, to support PREMs completion and to include culturally relevant topics. Several methods were used, predominantly drawing upon bicultural workers, translation, and community outreach to access and support communities at one or more stages of design or administration of PREMs. Limited evidence was available of the effectiveness of the identified methods and strategies. PREMs topics of trust, cultural responsiveness, care navigation and coordination were identified as pertinent to and frequently explored with this population.

Conclusions

The findings provide a basis for a maturity model that may guide change to increase participation of ethnically diverse communities in PREMs. In the short-medium term, health systems and services must be able to recognise and respond to cultural and linguistic diversity in the population when applying existing PREMs. In the longer-term, by working in collaboration with ethnically diverse communities, systems and services may co-create adapted or novel PREMs that tackle the factors that currently inhibit uptake and completion among ethnically diverse communities.

Background

Patient Reported Experience Measures (PREMs) are now among the key indicators of performance used to determine healthcare value [1]. PREMs produce local, service and system-level performance data that are essential to direct quality improvement and service development [1]. Inclusive PREMs that capture data from communities who have high healthcare utilisation and poor healthcare outcomes are therefore important to determine their experiences, and target for improvements [2]. Continued underrepresentation of people from ethnically diverse communities in PREMs data means that quality of care concerns from these communities are not identified and addressed.

People from ethnically diverse backgrounds, who speak a language other than a national language at home, have one or both parents born overseas, and/or have low proficiency in the national language/s, experience higher rates of healthcare-associated harm and preventable hospitalisations than the general population [3]. Understanding the experiences of people from ethnically diverse communities via PREMs provides an avenue to drive person-centric improvements to redress this inequity in service delivery and care outcomes. Yet limited accessibility of PREMs in terms of their structure, content and approaches to administration can prohibit their completion to improve care for people from ethnically diverse backgrounds, along with several other priority populations.

People from ethnically diverse backgrounds face specific barriers in accessing and completing PREMs that are subject to intra- and inter-group variation. Factors such as language proficiency, digital and health literacy [4], trust in government, culturally inappropriate content and limited resources to support participation create barriers for people from ethinically diverse backgrounds to participate in PREMs [5]. Widely used PREMs instruments are closed-item surveys, include technical and complex language and phrasing, and contain between 50–80 items [6, 7].

Targeted strategies and methods to increase uptake and completion of PREMs among ethnically diverse communities may contribute to reducing barriers to participation [8]. Synthesising evidence from existing studies that have captured patient-reported experiential data provides insight into the strategies and methods that have been used and may be effective in increasing participation of ethnically diverse communities in PREMs. This knowledge may inform population-based PREMs instruments and data collection approaches. Therefore, the aim of this review was to identify evidence in the peer-reviewed and grey literature of the strategies and methods employed in patient-reported experience measurement with people from ethnically diverse backgrounds to inform policy and practice.

Methods

A rapid evidence appraisal (REA) methodology was utilised to address the review objective because this project was undertaken to inform policy and practice for NSW Ministry of Health, Australia. REA is widely applied to answer policy-related questions that require expansive literature to be explored to answer a focused question within a limited timeframe [9]. REA rigorously follows established systematic review methodology to search and appraise existing evidence, limiting selected aspects of the review process to shorten the review timespan while still enabling the depth of current knowledge to be appraised [10]. In this REA, the search was limited to three electronic databases to enable a breadth of literature to be explored including grey material. The Centre for Evidence-Based Medicine (CEBM) guideline for REAs was followed [10].

To ensure a search strategy that was both sensitive and specific, comprehensive search strategies were developed by a medical information specialist for the electronic databases of published literature and for use with grey literature. The search strategy was applied to the following electronic databases in June 2022 by the medical information specialist: Medline; PsycINFO and CINAHL. A research team member (MPI) applied the same search terms to the websites of health agencies in Organisation for Economic Co-operation and Development (OECD) countries in which understanding and improving patient experience has been identified as a key outcome in relation to value-based care. In addition, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses—PRISMA statement—was used to guide the reporting of this REA [11].

Inclusion criteria

Articles were included if they met the following inclusion criteria:

  • Types of publication: Publications available in English, reporting original primary empirical or theoretical work, and published from the year 2000 onwards, which is contemporaneous with exploration of patient experience in health settings.

  • Types of settings: Any healthcare setting, including but not limited to public or private hospitals, day procedure centres, general practice or other primary/community care in OECD countries.

  • Types of study design: Conceptual, theoretical, quantitative, or qualitative studies of any research design.

  • Types of population: Health care consumers from ethnically diverse backgrounds who access health services were included; defined as born overseas or who have one or more parents born overseas in a country where English is not a national language, and/or who speak a language other than English at home; and/or who have low English language proficiency.

  • Interventions: Strategies or methods to increase uptake and/or completion of PREMs.

  • Outcomes: PREMs included any form of data “from patients on what happened to them in the course of care or treatment” were eligible for inclusion [12]. In this review, the focus was on experiences of a healthcare encounter or a service rather than general attitudes or perceptions of healthcare.

Exclusion criteria

Articles were excluded if they reported general beliefs or attitudes about healthcare rather than experiences of a care episode, along with those that did not meet the above criteria, or reported reviews, protocols, opinion, or editorial pieces.

Study identification and selection

Covidence systematic review software (Veritas Health Innovation, Melbourne, Australia) was used for study screening and management. Two reviewers (MPI, UC) screened the titles and abstracts in Covidence against the eligibility criteria. Full-text documents were obtained for all potentially relevant articles. The eligibility criteria were then applied to the articles by three reviewers (AC, MPI, UC). Four team members then met to finalise the eligible articles for inclusion across the published and grey literature (MPI, RH, RM, EM).

Data extraction and synthesis

A narrative evidence synthesis was undertaken to address the project aim of collating established experience measurement approaches and the impact of these methods on participation of ethnically diverse individuals [13]. Separate data extraction tools were developed for full-text articles and the grey literature and each tool was used to extract relevant information using a data extraction form created in MS Excel. Evidence synthesis occurred in stages and was conducted using a team-based approach involving seven members of the research team (RH, MPI, AC, CA, UC, RM and EM). Following the tabulation of initial descriptions of the included studies, their approaches and techniques, and the resulting impact on participation (where reported), team members individually reviewed the included articles. The group met to discuss key findings, to explore commonalities in current approaches and techniques that have been successfully applied, and to identify any challenges and mitigation strategies adopted. Through this group discussion, initial themes were generated and used to describe the evidence available. Two research team members developed the results content and shared this content with the wider group to further refine the identified themes.

Results

Search results

The systematic database search retrieved 1992 articles. After removal of 80 duplicates, 1912 articles remained. A total of 1461 articles were excluded after title and abstract screening. The remaining 443 articles underwent full-text review, of which 357 were excluded. A total of 97 documents were included, composed of 86 peer-reviewed journals and 11 documents from grey literature. Figure 1 demonstrates the search and selection process. Descriptions of eligible studies and results were tabulated. Tables 1, 2 and 3 show summaries of the included quantitative, mixed methods and qualitative articles from the electronic data search respectively. Table 4 shows the summary of grey literature articles.

Fig. 1
figure 1

Prisma flow diagram CALD report

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Table 1 Summary of included studies: quantitative N = 27
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Table 2 Summary of included studies- Mixed methods N = 9
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Table 3 Summary of included studies- Qualitative (N = 50)
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Table 4 Summary of included grey articles (n = 11)
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Characteristics of included studies

Database search

Studies in the peer-reviewed literature (n = 86) originated from: the United States of America (US; n = 29), Australia (n = 16), the United Kingdom (UK; n = 13), Sweden (n = 6), Norway (n  = 5), The Netherlands (n = 4), Canada (n = 4), Germany (n = 3), Switzerland (n = 2), New Zealand (n = 1), Denmark (n = 1), Greece (n = 1), multiple European Union (EU) countries (n = 1). Studies were conducted in: hospitals (n = 38), community settings (n = 29), primary care (n = 14) and dental services (n = 2), or in more than one setting (n = 3). Patients’ experiences were explored in relation to: maternity (n = 21), integrated care and/or care coordination (n = 12), mental health (n = 7), general practice (GP) (n = 3), emergency care (n = 2), gynaecology (n = 2),, pharmacy services (n = 2), convalescence care (n = 1), end of life care (n = 2), dental care (n = 2), student directed clinic care (n = 1), paediatric care (n = 1), radiation therapy (n = 1) and hospital care for COVID-19 (n = 1).

Of the total 86 studies identified from the electronic database searches, 27 studies used quantitative methods via survey, 50 employed qualitative methods and nine employed mixed methods combining surveys and interviews. Of the 50 qualitative studies, 37 (74%) used a single method of qualitative data-collection: individual interviews (n = 26) [14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39], focus-group discussions (FGD) (n = 10) [40,41,42,43,44,45,46,47,48,49] or group interview (n = 1) [50]. Thirteen of the 50 qualitative studies used two or more methods for data collection [51,52,53,54,55,56,57,58,59,60,61,62,63] combining individual interviews with FGDs (n = 9) [52, 53, 55,56,57,58,59, 63], with participant observation (n = 3) [54, 60, 62], with group interviews (n = 1) [61] or with FGDs and a site visit (n = 1) [40]. Almost all studies were with adults aged 18 and older, except for two studies that included samples aged 12–20 years old. Experiences were reported directly from patients (n = 85), or including both patients and carers/support persons (n = 8) aside from one study collecting end of life care experiences from the next of kin [64]. Of the studies that employed survey methods, 12 were cross sectional [65,66,67,68,69,70,71,72,73,74,75,76] and eight were experimental; four pre- and post-intervention studies [77,78,79,80], three randomised control trials (RCTs) [80,81,82], and one longitudinal study (1 and 3-months post intervention) [81]. Sample size ranged from 24 to 138,878 in the quantitative studies and 9 to 219 in the qualitative studies. Seven population-based studies had samples of > 1000 participants and included a subset of people from ethnically diverse backgrounds, identified via demographic survey items.

Grey literature

The grey literature search yielded 11 documents that originated from Australia (n = 4), New Zealand (n = 3), the UK (n = 3) and the US (n = 1). Of the four documents originating from Australia, one was aimed at a national level, developed by the Australian Commission on Safety and Quality in Health Care [83] and three were aimed at state level, developed by the NSW Agency for Clinical Innovation and Clinical Excellence Queensland [84,85,86]. The two documents from New Zealand were aimed at the national level, both developed by the Health Quality and Safety Commission New Zealand [87, 88]. In the UK, the identified documents were from the National Health Service (NHS; which includes NHS England, Scotland and Wales) [89, 90] and The Kings Fund [91]. The document from US was developed by The Beryl Institute [92]. Five of the grey literature documents were reports on patient experience surveys, of which three explored services and care in mental health settings [84, 89, 91] and two explored health care experiences system-wide [89, 93]. Three documents explored patient experience and satisfaction items, indicators, and survey instruments used for patient experience measurement [83, 87, 88]. Two resources were fact sheets about the importance of collecting patient experiences and instructions about how to complete them [85], and one was a video discussing the importance of the collecting diverse patient experiences [92]. One report described a survey instrument which was used to collect real-time data via a tracker device with specific discussion of responding to diversity via the support of carers, although ethnically diverse populations were not explicitly identified [86].

Review findings

Evidence from the 97 included papers was explored in relation to the review aim to identify the approaches and techniques employed in PREMs to improve participation amongst people from ethnically diverse backgrounds. Findings led to the development of four key themes: i) strategies for identifying and recruiting ethnically diverse communities to participate in PREMs, ii) approaches to creating data collection instruments and processes to support PREMs completion by people from ethnically diverse backgrounds, iii) the patient experience topics of relevance to ethnically diverse communities, and iv) the application of patient experience data from ethnically diverse communities in healthcare. Findings are presented in relation to each of these four areas.

  • i. Strategies for identifying and recruiting ethnically diverse communities

Gathering patient-reported experiences of people from ethnically diverse backgrounds is contingent upon identifying ethnically diverse communities and engaging these communities in PREMs. Evidence from the peer-reviewed literature indicated that patient experience data were often captured from individuals or families whilst in a clinical setting. In 49 studies, PREMs were captured while individuals were visiting, being admitted to, or discharged from, hospitals [14,15,16,17, 21, 23, 25, 29, 31, 33, 36, 37, 44, 49, 51, 52, 54, 60, 62, 63, 65, 68, 73, 76, 81, 82, 94,95,96] or while individuals were visiting primary care clinics [18,19,20, 26, 30, 38, 42, 43, 54, 58, 59, 69, 70, 75, 78, 97,98,99,100,101,102]. Thirty-one further studies reported PREMs being gathered via community and/or online environments. For example, ethnically diverse respondents were often identified through community organizations or via attending social events using flyers and social media [72, 80, 98, 99, 102, 103]. Other methods for identifying ethnically diverse communities included using administrative data. Given the limited sociocultural data available regarding ethnically diverse communities, these methods were based on identifying ethnically diverse communities from lower socio-economic groups such as via the Index of Multiple Deprivation (IMD) in England to identify eligible people based on their postcode and derived diversity [104], or via birth registration records from the Office of National Statistics. Identified individuals were then mailed leaflets in multiple languages to seek ethnically diverse respondents [22]. One study sought experiences of refugees aged 18–25 years using mental health services, which used multiple modalities for recruitment (e.g., project flyers on noticeboards, mail-outs, and presentations to professionals and youth from refugee backgrounds).a multi-faceted approach [35].

Qualitative studies often used additional sampling techniques to try to access relevant ethnically diverse participants, which were often directed to a particular community or group of communities who had access to a specific service or were experiencing a specific health condition. Twelve studies used purposive sampling to reach their target population [14, 19, 25, 28, 29, 31, 32, 35, 45, 47, 53, 57], including stratified, purposive sampling to represent the dominant cultural and language groups in their community. Snowball sampling was reported in five studies [24, 27, 32, 47, 57] and convenience sampling was reported in two studies [27, 28]. Community leaders were used to identify potential respondents in two studies via referrals [24, 47].

Bicultural workers were often engaged in the process of identifying and recruiting ethnically diverse communities. Twenty-nine studies reported the involvement of multicultural and/or multilingual team members or community leaders. Bicultural workers included researchers, multicultural health workers, community networks, formal and informal interpreters. Bicultural workers contributed to projects at a range of stages. In the establishment of projects to aid identification and recruitment of ethnically diverse participants. Seven studies discussed the involvement of multicultural and bi/multilingual staff members in facilitating recruitment [19, 33, 44, 48, 58, 61, 63]. The strategies identified involved contacting eligible ethnically diverse participants via telephone or speaking to potential participants in person to explain the study purpose and to obtain informed consent. Materials were frequently created in ethnically diverse community languages required to aid recruitment of communities, with bicultural workers also supporting the recruitment process. Seventeen studies developed documents in community languages and/or engaged bilingual personnel in the consent and recruitment process to support language translation of study information [14, 15, 19, 20, 33, 36, 42, 44, 48, 51, 53, 55, 57,58,59, 61, 63]. Ten studies provided patient-information sheets and consent documents in relevant community languages [14, 15, 20, 36, 42, 51, 55, 57, 59, 63]. Bicultural staff also aided in developing interview and focus group discussion guides [19, 33, 44, 48, 58, 61, 63]. In three studies, bicultural staff were trained in preparation to contribute to study processes; and three studies discussed provision of training to bilingual research personnel [42, 46, 63]. The training was in relation to support the personnel’s involvement in data-collection [42, 46] and one study trained staff for recruitment and data collection [63]. Six studies reported providing cash incentives to patients [69, 70, 77, 80, 98, 103]. The grey literature provided little detail about how patients from ethnically diverse backgrounds might be identified or recruited to complete PREMs.

  • ii. Creating data collection instruments and processes to support completion

Several strategies were used to support the process of data collection of patient experience. Twenty-five of the 36 studies included surveys that had been translated into multiple languages to aid completion [65, 67,68,69,70,71,72,73,74,75,76,77,78,79, 81, 94, 97,98,99,100, 102, 103, 105,106,107]. Whilst using translated surveys was considered to enable a wider population to complete the surveys, no direct evidence of the impact of using translated surveys on the quality and quantity of data collected was reported.

Just over half of the surveys used (20/36; 56%) were previously validated, English-language instrument(s) [64, 65, 67, 71, 72, 74,75,76,77, 79, 94, 98, 101, 103,104,105,106, 108, 109]. Of which, seven were adapted based on pilot testing with a subset of the target population [65, 67, 72, 76, 94, 106, 109]. Changes that resulted from pilot testing of existing instruments were: modifications to the response options to respond to diversity [72, 109], increasing the appropriateness of the tool content for ethnically diverse communities [76, 106], and reducing the complexity and reading level [75]. Three studies reported using shorter versions of a survey to increase completion rates [75, 94, 97], with response rates ranging from 38 to 60% in these studies.

A further 10 studies created purpose-built PREMs for ethnically diverse populations [66, 68,69,70, 73, 78, 80, 81, 96, 100]. Of these, five PREMs were developed drawing items together from a range of existing validated surveys [66, 69, 70, 80, 100], and the remainder were developed as new surveys [69, 70, 96]. Six of the studies that developed new surveys reported pilot testing the surveys with the target population to ensure appropriateness and comprehension [68,69,70, 73, 78, 96]. Three studies reported conducting reliability or validity analyses [68, 75, 76].

Five documents from the grey literature discussed adaptations to PREMs data collection instruments to aid completion by diverse respondents. Two documents provided insight about PREMs administration with a variety of existing mainstream PREMs in Australia i.e. Victoria Patient Satisfaction Monitor, Picker survey, National Healthcare Agreement, Queensland patient survey, Press Ganey and Hospital Consumer Assessment Healthcare Providers and Systems (HCAPS). These documents proposed the use of a range of data collection methods via health services, mail, online, and telephone interviewing to respond to diverse population needs [83, 84]. Similar approaches to diverse data collection modes were identified by the Health Quality & Safety Commission New Zealand [87]. The Health Quality & Safety Commission New Zealand created additional questions toconsider the assessment of culturally safe care through patient experience measurement [88]. A comprehensive approach was undertaken to develop culturally safe and appropriate questions, which involved exploring available frameworks, designing questions and cognitive pre-testing of questions to check for relevance, importance, and clarity with a diverse group of patients. The resulting additional patient survey questions captured experiences of the following aspects of care: listening, engaging in shared decision making, kindness and comfort, respect, and recognition of personal needs (cultural, spiritual and individual). Other grey literature documents identified additional modalities for PREMs, including a patient experience tracker; a computer-based tool to collect real-time patient experience data [86], the use of computer-assisted personal interviews (CAPI) [93], and offering PREMs in multiple languages [84, 87, 89].

In addition to creating or adapting survey instruments, flexibility in the process of data collection was a feature of studies aiming to capture PREMs from ethnically diverse communities. In survey studies, PREMs were administered via face-to-face, verbal surveys (N = 10) [67, 69,70,71, 74, 78,79,80, 94, 101, 105], via telephone verbal surveys (N = 2) [96, 109], paper-based surveys (N = 9) [64,65,66, 74, 82, 100, 105, 107, 109], and online (N = 2) [70, 74]. The mode of data collection and location appeared to be associated with the completion rates in these studies. Response rates were reported in 16 survey studies, which ranged from 20 to 95%. Generally, surveys with higher response rates (> 70%) were completed on-site in hospitals/clinic waiting areas and/or completed as verbal surveys conducted face-to-face. The survey with the highest response rate of 95% included only three items [99]. The lowest response rates (< 30%) were for paper-based, postal surveys. [66, 109, 110]. Interview studies adapted data collection methods to increase uptake among ethnically diverse communities by conducting interviews in an individual’s preferred language (n = 7) [65, 80, 81, 95, 96, 98, 103] and in a location convenient for them, often going into communities (n = 4) [65, 95, 96, 103]. Studies also offered participants the choice of completing [15, 16, 26, 63] individual interviews or focus groups [63], or of interviews being completed face-to-face or via telephone [15]. Participants were also offered the option to conduct individual interviews or interviews in pairs [26].

Bicultural workers were often used to support the data collection process in addition to identifying and recruiting ethnically diverse populations. Bicultural workers supported data collection (n = 24) [14, 15, 20, 21, 24, 25, 31, 33, 34, 37, 42,43,44, 46,47,48, 50,51,52,53, 56, 58, 61, 63] and data analysis (n = 12) [14, 15, 24, 31, 33, 43, 44, 47, 52, 53, 55, 56]. Most (86%; 43/50) of the qualitative studies conducted data collection in the respondents’ preferred community language via bicultural workers or interpreters [14, 15, 17,18,19,20,21,22, 24,25,26,27,28,29,30,31,32,33,34,35, 37,38,39, 41,42,43,44,45,46,47,48,49,50, 53,54,55,56, 58,59,60,61,62,63]. In addition to supporting language and cultural needs, the need for flexible and supportive data collection processes to enable ethnically diverse communities to engage in PREMs was reported in several studies. Strategies included scheduling focus groups at a range of times, including evenings or weekends [43, 45], providing transport for participants to and from the data collection site [48], and providing childcare facilities [42]. The opportunity to include a support person/s was also identified as helpful in the data collection process and comprehension of materials. Seven studies reported enabling a suppport person, such as a family member, to be present during interviews or focus groups [16, 20, 23, 53, 55, 59, 63], and four survey studies invited the involvement of a support person to assist respondents to complete PREMs [66, 67, 102, 109].

Support for the process of collecting PREMs among participants from diverse communities, in the grey literature, was outlined in four resources. One organisation provided fact sheets translated into multiple language for patients about how to share their experiences [85]. While another resource was a video with easy-to-follow animations that encouraged patients from ethnically diverse backgrounds to participate in PREMs [89]. The collection of patient experiences through an underpinning lens of equity and bias was identified in two resources, which included a brief video for staff members to address and promote an understanding patient experience through the lens of equity and bias [88, 92].

  • iii. Patient experience topics of relevance for ethnically diverse communities

The included studies showed that most PREMs captured standard healthcare experiences commonly featured in mainstream population surveys, however aspects specific to ethnically diverse populations were notable. These were: healthcare navigation and access [64, 67,68,69,70, 72, 75, 78, 96, 97, 99,100,101,102,103, 105, 106, 109], care experiences of models and processes of care designed to be culturally relevant [65, 73, 74, 77, 79, 80, 94, 95, 98, 107, 110], cultural competence of healthcare teams and services [74, 78, 96, 97], experiences of patient-provider communication [64, 69, 70, 72,73,74,75,76, 82, 94, 100, 104, 106, 107, 109, 110], and of respect in the context of patient and clinician interactions [73, 74, 80, 101, 109, 110].

Health system navigation and access are topics of central focus in studies exploring migrant experiences of healthcare, but evidence of the impact of health system navigation and access problems experienced by migrants were apparent within studies of a range of services. Key examples are shown in relation to reliance on emergency departments for the treatment and management of chronic conditions and cancer due to lack of knowledge and understanding about how to access the health services via primary and outpatient care [68, 70]. Poorer experiences of models and processes of care that have been established for the mainstream population were also notable among migrant populations, with evidence of a lack of shared understanding of patient education materials, processes to coordinate care, and the actions expected of patients in their own care in service areas such as maternity and cancer care [63, 65, 67]. Poorer experiences of care were often reflected in low scores on patient satisfaction measures [67, 68].

Topics of importance further differed based on key features of ethnically diverse communities, such as ethnicity, country of origin and English language proficiency. For example, communities in which English language proficiency was low identified challenges in health system navigation and communication with healthcare teams more so than for groups with good English language proficiency [82]. In communities with low English proficiency, a language concordant health professional was identified as increasing satisfaction with care experiences [41, 97]. Communities that were well established within the host country also indicated fewer problems in understanding and accessing the healthcare system [82]. Cultural competence in relation to specific healthcare issues, such as the experience of cancer and of maternity care, in which expectations may vary based on cultural and religious background, emerged as important to consider in evaluating experiences of care [16, 23, 41, 51, 82]. Low healthcare engagement of migrant communities and opportunities to develop skills that enable self-management were also identified as factors contributing to poor healthcare experiences in these areas of care [23, 41].

Care coordination emerged as a critical topic for ethnically diverse communities, but was connected with the quality and availability of interpreter services and access to suitable health service information [63, 69]. Topics of importance to ethnically diverse communities may therefore include experiences of care coordination, particularly in relation to chronic conditions, maternity care and cancer, but require consideration of the features of additional support that are needed to create a positive experience. For example, experiences may be impacted by whether interpreters available for all aspects of care in which they were required, easy to access by the patient and of a good quality such that the patient and professional generated a shared understanding of the situation and next steps.

Communication and respect in the patient-professional dyad was a notable topic for ethnically diverse communities in their experience of care. Evidence from studies of chronic disease management demonstrated that the quality and clarity of communication with healthcare professionals (or lack of) was a key contributor to their healthcare experiences [53]. Studies that evaluated culturally tailored interventions, such as a family-based obesity intervention, further demonstrated that when people had culturally appropriate communication they had more positive experiences of care [18]. A series of language-specific focus groups revealed key indicators of a positive patient experience for ethnically diverse communities were compassionate, kind and respectful treatment, and the negotiated involvement of their family in health care decision making [44]. Lack of culturally competent behaviour among health professionals was perceived as leaving patients feeling powerless in their own care [44].

  • iv. Applications of PREMs from ethnically diverse communities in healthcare

Patients’ experiences were gathered and reported predominantly to understand experiences of services of new programs and interventions targeted to ethnically diverse communities (69%; 59/86 studies). Five of these studies gathered PREMs seeking to improve capability in intercultural communication among healthcare staff [65, 73, 105], in person-centred care and shared decision making that is responsive to patient diversity [73, 104] and for managing patient distress [66]. In these studies, PREMs data was used to create educational materials and programs for staff training and development. Beyond these five studies, the evidence generated from the reviewed literature was not described in terms of its application. While not being directly applied to create change, 33 studies did provide recommendations for future health system planning to improve experiences among the ethnically diverse community based on their PREMs results [14, 16, 17, 19, 24, 25, 28, 30, 34,35,36,37,38,39, 41, 42, 44, 46, 47, 49, 51,52,53, 57, 58, 61, 65, 67, 72, 80, 82, 104, 105]. Areas for action included improving patient-professional communication, understanding of culturally respectful behaviours [16, 23, 51,52,53], access to interpreters [16] and personalised and culturally relevant patient education [20, 23, 37, 40, 44, 46, 51, 53, 63]. The grey literature predominantly provided PREMs to be used for evaluating service delivery rather than reporting applications of PREMs with ethnically diverse communities to change care [83, 84, 89, 93].

Based on the review findings, a preliminary maturity model (Fig. 2) was produced to guide short- medium- and long-term action, which may have application to other diverse population groups.

Fig. 2
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Maturity model for diversity in PREMs

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Discussion

A substantial literature demonstrated the methods and approaches used to collect patient-reported experiences among ethnically diverse communities, with 97 papers included in the review. Data extraction and synthesis revealed five broad strategies employed throughout the process of PREMs development and collection that sought to increase uptake and completion of PREMs with a range of communities in community and healthcare settings. These five strategies were: 1) ensuring the project design was responsive to culturally and linguistically diverse needs when establishing the project team and processes, 2) targeting resources and communication about the purpose, process and application of PREMs, 3) embedding flexibility into processes of collecting PREMs, 4) creating inclusive data collection processes relative to the community needs and preferences, and 5) recognising the direct and indirect costs with reimbursement and remuneration.

Central to most identified strategies, was collaboration with bicultural/multicultural staff and community members who provided critical support in one or more stages of PREM design and collection. Bi/multi-cultural staff and/or community members contributed to creating and communicating information about the purpose of PREMs, supporting translation to ensure high quality, advising on suitability of the content and its complexity with reference to community needs and pilot testing materials. Engaging bi/multicultural team and community members to elicit patient-reported experiences offers a number of benefits, but requires consideration and planning at the outset of PREMs work to ensure mutual learning, empowerment, and adequate resourcing [111, 112]. Cross-cultural research highlights a range of considerations when working over cross-cultural boundaries [112].

As health systems move towards value-based care, PREMs are increasingly important as one of the key indicators to demonstrate that health services are improving what matters to patients [113]. Almost half of the Australian population have ethnically diverse backgrounds with one or more parents born overseas, making PREMs participation from these communities essential to provide representative data [114]. Recent evidence indicates that ethnicity is one factor that may be assocaited with different patient experiences [115]. This review demonstrates that there are methods that are commonly and successfully used to increase responses from ethnic minority groups. When considering the strategies that have been used to greatest effect, it is apparent that additional resource is required at all stages of PREMs collection to increase community engagement and responses. Requirements for public health services to achieve a representative sample of respondents are lacking along with the tools and resources to enable this. Despite strong traction towards value-based care, without these implementation supports, communities will continue to lack appropriate PREMs tools and the support needed to engage in their completion.

Implications

In the context of existing PREM instruments and processes, the maturity model resulting from this review has several implications for progressing PREMs engagement among ethnically diverse populations. Firstly, the model highlights the need to be able to recognise diversity in population groups. Limited and incomplete socio-cultural data is a barrier to this in many health systems worldwide [2]. The Australian context provides an example of how the need to capture information on diversity has advanced at a system level. In 2022, in addition their minimum core set of data variables (country of birth; main language other than English spoken at home; proficiency in spoken English, and Indigenous status), the Australian Bureau of Statistics (ABS) recommended collection of: country of birth of father and mother, religious affiliation, and year of arrival in Australia to increase the ease of identification of key features of diverse communities and factors that may impact on health and social well-being. Ensuring comprehensive routine capture of socio-cultural data via standardised data variables is a central system requirement to support better understanding of and provision for societal needs [107]. Access to these data may help to identify and facilitate comparison of PREMs results between services, cohorts and over time to track improvement where comparable measures are used.

With the target population identified, the second stage of the model identifies the need to respond to diversity via flexible and supported data collection methods. A wide literature exists on inclusive and cross-cultural survey content and methods, which demonstrates key aspects of survey behaviour that may be targeted to increase access and minimise bias in uptake, completion and outcomes from PREMs with ethnically diverse communities [108, 109]. Finally, the model depicts the need for a shift in the conceptualisation and design of PREMs that ensures measurement tools and processes are created to include diversity, with collaborative and community-partnership approaches championed. Aligning with the premise of person-centric healthcare, it is proposed that by developing PREMs topics, instruments and methods with community members, resulting tools and processes are likely to better suit community needs and preferences, leading to greater participation.

Limitations

As an REA, the search scope was limited to three electronic databases and relevant material may have been omitted from the review. Although a wide range of search terms were developed in consultation with a medical librarian who is experienced in constituting and executing literature searches, the concept of experience is broad and relevant material, which may have also constrained the sensitivity of the search process. The inclusion of grey literature enabled this review to identify current approaches used in health systems for PREM collection and the extent to which these have sought to respond to diversity.

Conclusions

A large literature has reported experiences of healthcare among ethnically diverse populations that demonstrate approaches that can be used to increase participation in PREMs collection among diverse communities. Five strategies have been predominantly used to increase PREMs participation, most often reported in research studies. Strategies include being responsive to community needs, targeting recruitment resources and communication, embedding flexibility in data collection processes, creating inclusive data collection processes, recognising the costs of participation and providing remuneration. Whilst strategies are available that appear to be effective in encouraging minority ethnic groups to participate in PREMs, there was limited evidence of their application in surveying conducted by public health system organisations. Public health systems must dedicate resource to enable the engagement of bi/multicultural health staff and community leaders to design and support the administration of PREMs if they are to ensure representative participation in PREMs across communities. In the longer-term, by working in collaboration with their communities, systems and services may co-create targeted PREMs that enable uptake and completion among communities.

Availability of data and materials

Data sharing is not applicable to this article.

Abbreviations

ABS:

Australian bureau of statistics

CALD:

Culturally and linguistically diverse

FGD:

Focus group discussion

OECD:

Organisation for economic co-operation and development

PREM:

Patient reported experience measure

USA:

United States of America

UK:

United Kingdom

References

  1. Wolff AC, Dresselhuis A, Hejazi S, Dixon D, Gibson D, Howard AF, et al. Healthcare provider characteristics that influence the implementation of individual-level patient-centered outcome measure (PROM) and patient-reported experience measure (PREM) data across practice settings: a protocol for a mixed methods systematic review with a narrative synthesis. Syst Rev. 2021;10(1):169.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Calvert MJ, Cruz Rivera S, Retzer A, Hughes SE, Campbell L, Molony-Oates B, et al. Patient reported outcome assessment must be inclusive and equitable. Nat Med. 2022;28(6):1120–4.

    Article  PubMed  CAS  Google Scholar 

  3. Chauhan A, Walton M, Manias E, Walpola RL, Seale H, Latanik M, et al. The safety of health care for ethnic minority patients: a systematic review. Int J Equity Health. 2020;19(1):118.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Zrubka Z, Brito Fernandes Ó, Baji P, Hajdu O, Kovacs L, Kringos D, et al. Exploring eHealth Literacy and patient-reported experiences with outpatient care in the Hungarian general adult population: Cross-sectional study. J Med Internet Res. 2020;22(8): e19013.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Gleeson H, Calderon A, Swami V, Deighton J, Wolpert M, Edbrooke-Childs J. Systematic review of approaches to using patient experience data for quality improvement in healthcare settings. BMJ Open. 2016;6(8): e011907.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Coulter A, Locock L, Ziebland S, Calabrese J. Collecting data on patient experience is not enough: they must be used to improve care. Bmj. 2014;348.

  7. Robert G, Cornwell J. Rethinking policy approaches to measuring and improving patient experience. SAGE Publications Sage UK: London, England; 2013:67–9.

  8. Willis A, Isaacs T, Khunti K. Improving diversity in research and trial participation: the challenges of language. The Lancet Public Health. 2021;6(7):e445–6.

    Article  PubMed  Google Scholar 

  9. Varker T, Forbes D, Dell L, Weston A, Merlin T, Hodson S, et al. Rapid evidence assessment: increasing the transparency of an emerging methodology. J Eval Clin Pract. 2015;21(6):1199–204.

    Article  PubMed  Google Scholar 

  10. Barends E, Rousseau, D.M. & Briner, R.B. (Eds). CEBMa Guideline for Rapid Evidence Assessments in Management and Organizations, Version 1.0. Amsterdam; 2017.

  11. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Int J Surg. 2010;8(5):336–41.

    Article  PubMed  Google Scholar 

  12. Ahmed F, Burt J, Roland M. Measuring Patient Experience: Concepts and Methods. Patient Patient Centered Outcomes Res. 2014;7(3):235–41.

    Article  Google Scholar 

  13. Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews. A Prod ESRC Methods Prog Vers. 2006;1: b92.

    Google Scholar 

  14. Alkhaled T, Rohde G, Lie B, Johannessen B. Navigating the care between two distinct cultures: a qualitative study of the experiences of Arabic-speaking immigrants in Norwegian hospitals. BMC Health Serv Res. 2022;22(1):400.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Bitar D, Oscarsson M. Arabic-speaking women’s experiences of communication at antenatal care in Sweden using a tablet application-Part of development and feasibility study. Midwifery. 2020;84: 102660.

    Article  PubMed  Google Scholar 

  16. Carlsson T, Marttala UM, Mattsson E, Ringner A. Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study. BMC Pregnancy Childbirth. 2016;16(1):130.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Cervantes L, Martin M, Frank MG, Farfan JF, Kearns M, Rubio LA, et al. Experiences of Latinx Individuals Hospitalized for COVID-19: A Qualitative Study. JAMA Netw Open. 2021;4(3): e210684.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Falbe J, Friedman LE, Sokal-Gutierrez K, Thompson HR, Tantoco NK, Madsen KA. “She gave me the confidence to open up”: bridging communication by promotoras in a childhood obesity intervention for latino families. Health Educ Behav. 2017;44(5):728–37.

    Article  PubMed  Google Scholar 

  19. Hogg R, de Kok B, Netto G, Hanley J, Haycock-Stuart E. Supporting Pakistani and Chinese families with young children: perspectives of mothers and health visitors. Child: Care, Health & Development. 2015;41(3):416–23.

  20. Jager MJ, van der Sande R, Essink-Bot M-L, van den Muijsenbergh METC. Views and experiences of ethnic minority diabetes patients on dietetic care in the Netherlands - a qualitative study. Eur J Pub Health. 2019;29(2):208–13.

    Article  Google Scholar 

  21. Janevic T, Piverger N, Afzal O, Howell EA. “Just because you have ears doesn’t mean you can hear”-perception of racial-ethnic discrimination during childbirth. Ethn Dis. 2020;30(4):533–42.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Jomeen J, Redshaw M. Ethnic minority women’s experience of maternity services in England. Ethn Health. 2013;18(3):280–96.

    Article  PubMed  Google Scholar 

  23. Jonkers M, Richters A, Zwart J, Ory F, van Roosmalen J. Severe maternal morbidity among immigrant women in the Netherlands: patients’ perspectives. Reprod Health Matters. 2011;19(37):144–53.

    Article  PubMed  Google Scholar 

  24. Jun M, Thongpriwan V, Choi J, Sook Choi K, Anderson G. Decision-making about prenatal genetic testing among pregnant Korean-American women. Midwifery. 2018;56:128–34.

    Article  PubMed  Google Scholar 

  25. Kumar K, Raizada SR, Mallen CD, Stack RJ. UK-South Asian patients’ experiences of and satisfaction toward receiving information about biologics in rheumatoid arthritis. Patient Prefer Adherence. 2018;12:489–97.

    Article  PubMed  PubMed Central  Google Scholar 

  26. LaMancuso K, Goldman RE, Nothnagle M. “Can I Ask That?”: perspectives on perinatal care after resettlement among karen refugee women, medical providers, and community-based doulas. J Immigr Minor Health. 2016;18(2):428–35.

    Article  PubMed  Google Scholar 

  27. McLeish J. Maternity experiences of asylum seekers in England. Br J Midwifery. 2005;13(12):782–5.

    Article  Google Scholar 

  28. Moxey JM, Jones LL. A qualitative study exploring how Somali women exposed to female genital mutilation experience and perceive antenatal and intrapartum care in England. BMJ Open. 2016;6(1): e009846.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Muscat DM, Kanagaratnam R, Shepherd HL, Sud K, McCaffery K, Webster A. Beyond dialysis decisions: a qualitative exploration of decision-making among culturally and linguistically diverse adults with chronic kidney disease on haemodialysis. BMC Nephrol. 2018;19(1):339.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Nadeau L, Jaimes A, Johnson-Lafleur J, Rousseau C. Perspectives of migrant youth, parents and clinicians on community-based mental health services: negotiating safe pathways. J Child Fam Stud. 2017;26(7):1936–48.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Nguyen M-LT, Garcia F, Juarez J, Zeng B, Khoong EC, Nijagal MA, et al. Satisfaction can co-exist with hesitation: qualitative analysis of acceptability of telemedicine among multi-lingual patients in a safety-net healthcare system during the COVID-19 pandemic. BMC Health Serv Res. 2022;22(1):195.

  32. Peters IA, Posthumus AG, Steegers EAP, Denktas S. Satisfaction with obstetric care in a population of low-educated native Dutch and non-western minority women. Focus group research. PLoS ONE [Electronic Resource]. 2019;14(1):e0210506.

  33. Ranji A, Dykes A-K, Ny P. Routine ultrasound investigations in the second trimester of pregnancy: the experiences of immigrant parents in Sweden. J Reprod Infant Psychol. 2012;30(3):312–25.

    Article  Google Scholar 

  34. Singh P, King-Shier K, Sinclair S. South Asian patients’ perceptions and experiences of compassion in healthcare. Ethn Health. 2020;25(4):606–24.

    Article  PubMed  Google Scholar 

  35. Valibhoy MC, Kaplan I, Szwarc J. “It comes down to just how human someone can be”: A qualitative study with young people from refugee backgrounds about their experiences of Australian mental health services. Transcult Psychiatry. 2017;54(1):23–45.

    Article  PubMed  Google Scholar 

  36. White J, Plompen T, Tao L, Micallef E, Haines T. What is needed in culturally competent healthcare systems? A qualitative exploration of culturally diverse patients and professional interpreters in an Australian healthcare setting. BMC Public Health. 2019;19(1):1096.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Wilkinson E, Randhawa G, Brown E, Da Silva GM, Stoves J, Warwick G, et al. Time, timing, talking and training: Findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients. Clin Kidney J. 2017;10(3):419–24.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Zehetmair C, Zeyher V, Cranz A, Ditzen B, Herpertz SC, Kohl RM, et al. A Walk-In Clinic for Newly Arrived Mentally Burdened Refugees: The Patient Perspective. Int J Environ Res Public Health [Electronic Resource]. 2021;18(5):25.

    Google Scholar 

  39. Speed S, Sun Z, Liu Z. A focus group study of older Chinese people with CVD patients in the North West of the UK. Prim Health Care Res Dev. 2021;22: e24.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Abuelmagd W, Osman BB, Hakonsen H, Jenum AK, Toverud E-L. Experiences of Kurdish immigrants with the management of type 2 diabetes: a qualitative study from Norway. Scand J Prim Health Care. 2019;37(3):345–52.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Ahrne M, Schytt E, Andersson E, Small R, Adan A, Essen B, et al. Antenatal care for Somali-born women in Sweden: Perspectives from mothers, fathers and midwives. Midwifery. 2019;74:107–15.

    Article  PubMed  Google Scholar 

  42. England R, Doughty K, Genc S, Putkeli Z. Working with refugees: health education and communication issues in a child health clinic. Health Educ J. 2003;62(4):359–68.

    Article  Google Scholar 

  43. Garcia-Jimenez M, Calvo-Friedman A, Singer K, Tanner M. Patient Experiences with the Use of Telephone Interpreter Services: An Exploratory, Qualitative Study of Spanish-Speaking Patients at an Urban Community Health Center. Narrative Inquiry Bioethics. 2019;9(2):149–62.

    Article  Google Scholar 

  44. Garrett PW, Dickson HG, Young L, Whelan AK, Forero R. What do non-English-speaking patients value in acute care? Cultural competency from the patient’s perspective: a qualitative study. Ethn Health. 2008;13(5):479–96.

    Article  PubMed  Google Scholar 

  45. Gilbert AS, Antoniades J, Brijnath B. The symbolic mediation of patient trust: Transnational health-seeking among Indian-Australians. Soc Sci Med. 2019;235:112359.

    Article  PubMed  Google Scholar 

  46. Kwok C, Koo FK. Participation in treatment decision-making among Chinese-Australian women with breast cancer. Support Care Cancer. 2017;25(3):957–63.

    Article  PubMed  Google Scholar 

  47. Maneze D, Everett B, Kirby S, DiGiacomo M, Davidson PM, Salamonson Y. “I have only little English”: language anxiety of Filipino migrants with chronic disease. Ethn Health. 2016;21(6):596–608.

    Article  PubMed  Google Scholar 

  48. Northridge ME, Schenkel AB, Birenz S, Estrada I, Metcalf SS, Wolff MS. “You Get Beautiful Teeth Down There”: racial/ethnic minority older adults’ perspectives on care at dental school clinics. J Dent Educ. 2017;81(11):1273–82.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Wieslander CK, Alas A, Dunivan GC, Sevilla C, Cichowski S, Maliski S, et al. Misconceptions and miscommunication among Spanish-speaking and English-speaking women with pelvic organ prolapse. Int Urogynecol J. 2015;26(4):597–604.

    Article  PubMed  Google Scholar 

  50. Rose VK, Harris MF. Experiences of self-management support from GPs among Australian ethnically diverse diabetes patients: a qualitative study. Psychol Health Med. 2015;20(1):114–20.

    Article  PubMed  Google Scholar 

  51. Chu CMY. Postnatal experience and health needs of Chinese migrant women in Brisbane. Aust Ethnicity Health. 2005;10(1):33–56.

    Article  Google Scholar 

  52. Decker MJ, Pineda N, Gutmann-Gonzalez A, Brindis CD. Youth-centered maternity care: a binational qualitative comparison of the experiences and perspectives of Latina adolescents and healthcare providers. BMC Pregnancy Childbirth. 2021;21(1):349.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Frahsa A, Farquet R, Bayram T, De Araujo L, Meyer S, Sakarya S, et al. Experiences with health care services in switzerland among immigrant women with chronic illnesses. Front Public Health. 2020;8:553438.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Grønseth AS. Experiences of tensions in re-orienting selves: Tamil refugees in northern Norway seeking medical advice. Anthropol Med. 2006;13(1):77–98.

    Article  PubMed  Google Scholar 

  55. Hadwiger S. Acculturation and diabetes in a new Hispanic community. Hispanic Health Care Int (Springer Publishing Company, Inc). 2005;3(3):133–42.

    Google Scholar 

  56. Herrero-Arias R, Diaz E. A qualitative study on the experiences of southern European immigrant parents navigating the Norwegian healthcare system. Int J Equity Health. 2021;20(1):42.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Madden H, Harris J, Blickem C, Harrison R, Timpson H. “Always paracetamol, they give them paracetamol for everything”: a qualitative study examining Eastern European migrants’ experiences of the UK health service. BMC Health Serv Res. 2017;17(1):604.

    Article  PubMed  PubMed Central  Google Scholar 

  58. McKinlay E, Graham S, Horrill P. Culturally and linguistically diverse patients’ views of multimorbidity and general practice care. J Prim Health Care. 2015;7(3):228–35.

    Article  PubMed  Google Scholar 

  59. Semedo B, Stalnacke BM, Stenberg G. A qualitative study among women immigrants from Somalia-experiences from primary health care multimodal pain rehabilitation in Sweden. Eur J Physiother. 2020;22(4):197–205.

    Article  Google Scholar 

  60. Markovic M, Manderson L, Wray N, Quinn M. “He’s telling us something”: women’s experiences of cancer disclosure and treatment decision-making in Australia. Anthropol Med. 2004;11(3):327–41.

    Article  PubMed  Google Scholar 

  61. Wojnar DM. Perinatal experiences of Somali couples in the United States. J Obstet Gynecol Neonatal Nurs. 2015;44(3):358–69.

    Article  PubMed  Google Scholar 

  62. Wurth K, Langewitz W, Reiter-Theil S, Schuster S. Their view: difficulties and challenges of patients and physicians in cross-cultural encounters and a medical ethics perspective. BMC Med Ethics. 2018;19(1):70.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Shaw JM, Shepherd HL, Durcinoska I, Butow PN, Liauw W, Goldstein D, et al. It’s all good on the surface: care coordination experiences of migrant cancer patients in Australia. Support Care Cancer. 2016;24(6):2403–10.

    Article  PubMed  Google Scholar 

  64. Nayfeh A, Yarnell CJ, Dale C, Conn LG, Hales B, Gupta TD, et al. Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds. BMC Palliat Care. 2021;20(1):145.

    Article  PubMed  PubMed Central  Google Scholar 

  65. Bains S, Sundby J, Lindskog BV, Vangen S, Diep LM, Owe KM, et al. Satisfaction with maternity care among recent migrants: an interview questionnaire-based study. BMJ Open. 2021;11(7):e048077.

    Article  PubMed  PubMed Central  Google Scholar 

  66. Damery S, Sein K, Nicholas J, Baharani J, Combes G. The challenge of managing mild to moderate distress in patients with end stage renal disease: results from a multi-centre, mixed methods research study and the implications for renal service organisation. BMC Health Serv Res. 2019;19(1):989.

    Article  PubMed  PubMed Central  Google Scholar 

  67. Bockey AJ, Janda A, Braun C, Muller A-M, Stete K, Kern WV, et al. Patient satisfaction & use of health care: a cross-sectional study of asylum seekers in the Freiburg initial reception centre. BMC Health Serv Res. 2020;20(1):709.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Boutziona I, Papanikolaou D, Sokolakis I, Mytilekas KV, Apostolidis A. Healthcare access, quality, and satisfaction among Albanian immigrants using the emergency department in Northern Greece. J Immigr Minor Health. 2020;22(3):512–25.

    Article  PubMed  Google Scholar 

  69. Cook N, Hollar L, Isaac E, Paul L, Amofah A, Shi L. Patient Experience in Health Center Medical Homes. J Community Health. 2015;40(6):1155–64.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Cook N, Hollar TL, Zunker C, Peterson M, Phillips T, De Lucca M. Supporting medical home transformation through evaluation of patient experience in a large culturally diverse primary care safety net. J Public Health Manag Pract. 2016;22(3):265–74.

    Article  PubMed  Google Scholar 

  71. Henderson J, Carson C, Jayaweera H, Alderdice F, Redshaw M. Recency of migration, region of origin and women’s experience of maternity care in England: Evidence from a large cross-sectional survey. Midwifery. 2018;67:87–94.

    Article  PubMed  PubMed Central  Google Scholar 

  72. Lim BT, Huang Y-J, Shepherd HL, Shaw J, Costa D, Durcinoska I, et al. Health literacy and cancer care coordination in Chinese migrant patients and their carers: A cross-sectional survey. Psychooncology. 2019;28(5):1048–55.

    Article  PubMed  Google Scholar 

  73. Lindberg LG, Mundy SS, Kristiansen M, Johansen KS, Carlsson J. Satisfaction with mental health treatment among patients with a non-Western migrant background: a survey in a Danish specialized outpatient mental health clinic. Eur J Pub Health. 2019;29(4):700–5.

    Article  Google Scholar 

  74. Mander S, Miller YD. Perceived safety, quality and cultural competency of maternity care for culturally and linguistically diverse women in Queensland. J Racial Ethn Health Disparities. 2016;3(1):83–98.

    Article  PubMed  Google Scholar 

  75. Platonova EA, Saunders WB, Warren-Findlow J, Hutchison JA. Patient perceptions of patient-centered medical home characteristics and satisfaction with free clinic services. Popul Health Manag. 2016;19(5):324–31.

    Article  PubMed  Google Scholar 

  76. Shin J, Moczygemba LR, Barner JC, Garza A, Linedecker-Smith S, Srinivasa M. Patient experience with clinical pharmacist services in travis county federally qualified health centers. Pharm Pract. 2020;18(2):1–6.

    Google Scholar 

  77. Ryan D, Maurer S, Lengua L, Duran B, Ornelas IJ. Amigas Latinas Motivando el Alma (ALMA): an Evaluation of a Mindfulness Intervention to Promote Mental Health among Latina Immigrant Mothers. J Behav Heal Serv Res. 2018;45(2):280–91.

    Google Scholar 

  78. Schinkel S, Schouten BC, Street RL Jr, van den Putte B, van Weert JCM. Enhancing health communication outcomes among ethnic minority patients: The effects of the match between participation preferences and perceptions and doctor-patient concordance. J Health Commun. 2016;21(12):1251–9.

    Article  PubMed  Google Scholar 

  79. Schutt RK, Woodford ML. Increasing health service access by expanding disease coverage and adding patient navigation: challenges for patient satisfaction. BMC Health Serv Res. 2020;20(1):175.

    Article  PubMed  PubMed Central  Google Scholar 

  80. Torres VN, Williams EC, Ceballos RM, Donovan DM, Ornelas IJ. Participant satisfaction and acceptability of a culturally adapted brief intervention to reduce unhealthy alcohol use among latino immigrant men. American Journal of Mens Health. 2020;14(3):1557988320925652.

    Article  Google Scholar 

  81. Dang S, Karanam C, Gomez-Orozco C, Gomez-Marin O. Mobile phone intervention for heart failure in a minority Urban county hospital population: usability and patient perspectives. Telemed J E Health. 2017;23(7):544–54.

    Article  PubMed  Google Scholar 

  82. Hyatt A, Lipson-Smith R, Gough K, Butow P, Jefford M, Hack TF, et al. Culturally and linguistically diverse oncology patients’ perspectives of consultation audio-recordings and question prompt lists. Psychooncology. 2018;27(9):2180–8.

    Article  PubMed  Google Scholar 

  83. Board N, Matete-Owiti S. REVIEW OF PATIENT EXPERIENCE AND SATISFACTION SURVEYS CONDUCTED WITHIN PUBLIC AND PRIVATE HOSPITALS IN AUSTRALIA Australian Commission for Safety and Quality in Health Care; 2012.

  84. Australia CEQ-. Statewide Report 2019 Queensland Health-What consumers say about Queensland public mental health services? ; 2020.

  85. Australia NSWHAfCI-. Patient reported measures- resources for clinicians and patients. 2017.

  86. Australia NSWHAfCI-. PATIENT AND STAFF EXPERIENCE - PATIENT EXPERIENCE TRACKERS. un specified.

  87. Zealand HQSC-N. New Zealand health Quality & safety Commission- development of Patient experience indicators. 2013.

  88. Zealand HQSC-N. Measuring culturally safe care through the patient experience surveys. 2021.

  89. Kingdom NHS-U. Friends and Family Test (FFT) 2020.

  90. Kingdom NHS-U. National Patient and Staff Surveys-Overall Patient Experience Scores un-specified.

  91. Keating F, Robertson D, Kotecha N. The Kings Fund- Ethnic Diversity and Mental Health in London Recent developments. 2003.

  92. USA TBI-. PX Learning Bite: Equity, Bias and Human Experience un-specified.

  93. Zealand MoH-N. Patient Experience: Key findings of the New Zealand Health Survey. 2011/12.

  94. Gurbuz B, Groskreutz C, Vortel M, Borde T, Rancourt RC, Stepan H, et al. The influence of migration on women’s satisfaction during pregnancy and birth: results of a comparative prospective study with the Migrant Friendly Maternity Care Questionnaire (MFMCQ). Arch Gynecol Obstet. 2019;300(3):555–67.

    Article  PubMed  CAS  Google Scholar 

  95. Liu R, Chao MT, Jostad-Laswell A, Duncan LG. Does centeringpregnancy group prenatal care affect the birth experience of underserved women? A mixed methods analysis. J Immigr Minor Health. 2017;19(2):415–22.

    Article  PubMed  PubMed Central  Google Scholar 

  96. McBride J, Block A, Russo A. An integrated healthcare service for asylum seekers and refugees in the South-Eastern Region of Melbourne: Monash Health Refugee Health and Wellbeing. Aust J Prim Health. 2017;23(4):323–8.

    Article  PubMed  Google Scholar 

  97. Eskes C, Salisbury H, Johannsson M, Chene Y. Patient satisfaction with language- concordant care. J Phys Assist Educ (Physician Assistant Education Association). 2013;24(3):14–22.

    Article  Google Scholar 

  98. Kaltman S, Hurtado de Mendoza A, Serrano A, Gonzales FA. A mental health intervention strategy for low-income, trauma-exposed Latina immigrants in primary care: A preliminary study. Am J Orthopsychiatry. 2016;86(3):345–54.

  99. LaGrandeur J, Moros M, Dobrick J, Rahimian R, Siyahian A, Tomlinson E, et al. TotShots: An innovative pediatric free clinic providing high patient satisfaction to the underserved. Fam Med. 2018;50(10):779–81.

    Article  PubMed  Google Scholar 

  100. Olausson M, Esfahani N, Ostlin J, Hagglin C. Native-born versus foreign-born patients’ perception of communication and care in Swedish dental service. Swed Dent J. 2016;40(1):91–100.

    PubMed  Google Scholar 

  101. Sharif MZ, Biegler K, Mollica R, Sim SE, Nicholas E, Chandler M, et al. A health profile and overview of healthcare experiences of Cambodian American refugees and immigrants residing in southern California. J Immigr Minor Health. 2019;21(2):346–55.

    Article  PubMed  PubMed Central  Google Scholar 

  102. Moroz A, Schoeb V, Fan G, Lee M. Convalescence care for seniors in Lower Manhattan: an interdisciplinary approach to community rehabilitation. Top Geriatric Rehabil. 2003;19(4):291–7.

    Article  Google Scholar 

  103. Mendoza S, Armbrister AN, Abraido-Lanza AF. Are you better off? Perceptions of social mobility and satisfaction with care among Latina immigrants in the U.S. Soc Sci Med. 2018;219:54–60.

  104. Pinder RJ, Ferguson J, Moller H. Minority ethnicity patient satisfaction and experience: results of the National cancer patient experience survey in England. BMJ Open. 2016;6(6): e011938.

    Article  PubMed  PubMed Central  Google Scholar 

  105. Martino SC, Elliott MN, Hambarsoomian K, Weech-Maldonado R, Tamayo L, Gaillot S, et al. Disparities in care experienced by older hispanic medicare beneficiaries in urban and rural areas. Med Care. 2022;60(1):37–43.

    Article  PubMed  Google Scholar 

  106. Soo J, Chu C, French J. Evaluation of patient satisfaction: radiation therapy services for Chinese patients at the British Columbia cancer agency – Vancouver Centre. J Radiother Pract. 2013;12(2):124–38.

    Article  Google Scholar 

  107. Yelland J, Riggs E, Small R, Brown S. Maternity services are not meeting the needs of immigrant women of non-English speaking background: Results of two consecutive Australian population based studies. Midwifery. 2015;31(7):664–70.

    Article  PubMed  Google Scholar 

  108. Detollenaere J, Hanssens L, Schafer W, Willems S. Can you recommend me a good GP? Describing social differences in patient satisfaction within 31 countries. Int J Qual Health Care. 2018;30(1):9–15.

    Article  PubMed  Google Scholar 

  109. Parast L, Mathews M, Martino S, Lehrman WG, Stark D, Elliott MN. Racial/ethnic differences in emergency department utilization and experience. J Gen Intern Med. 2022;37(1):49–56.

    Article  PubMed  Google Scholar 

  110. Redshaw M, Henderson J. Care associated with stillbirth for the most disadvantaged women: A multi-method study of care in England. Birth. 2018;45(3):275–85.

    Article  PubMed  PubMed Central  Google Scholar 

  111. Cha E-S, Kim KH, Erlen JA. Translation of scales in cross-cultural research: issues and techniques. J Adv Nurs. 2007;58(4):386–95.

    Article  PubMed  Google Scholar 

  112. Broesch T, Crittenden AN, Beheim BA, Blackwell AD, Bunce JA, Colleran H, et al. Navigating cross-cultural research: methodological and ethical considerations. Proc Royal Soc B Biol Sci. 1935;2020(287):20201245.

    Google Scholar 

  113. Koff E, Lyons N. Implementing value‐based health care at scale: the NSW experience. Med J Aust. 2020;212(3):104–6. e1.

  114. Australian Bureau of Statistics. Cultural diversity: Census 2021 [Available from: https://www.abs.gov.au/statistics/people/people-and-communities/cultural-diversity-census/latest-release.

  115. Adams C, Schembri A, Chauhan A, Walpola R, Harrison R. Differences in patient experiences among people from ethnic minority backgrounds: A comparative analysis of HCAHPS Results. J Patient Exp. 2023;10:23743735231218868.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

This study was commissioned by and co-designed with the New South Wales, Ministry of Health.

Funding

This project was funded by New South Wales Ministry of Health.

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Authors and Affiliations

  1. Centre for Health Systems and Safety Research, Australian Institute of Health Innovation, Faculty of Medicine, Health and Human Sciences- Macquarie University, Level 6, 75 Talavera Road, Sydney, NSW, 2109, Australia

    Reema Harrison, Maha Pervaz Iqbal, Upma Chitkara, Corey Adams & Ashfaq Chauhan

  2. Centre for Healthcare Resilience and Implementation Science, Australian Institute of Health Innovation, Faculty of Medicine, Health and Human Sciences Macquarie University, Level 6, 75 Talavera Road, Sydney, NSW, 2109, Australia

    Rebecca Mitchell

  3. School of Nursing and Midwifery, Monash University, Melbourne, VIC, 3800, Australia

    Elizabeth Manias

  4. Elevating the Human Experience Program, NSW Ministry of Health, Sydney, NSW, 2065, Australia

    Megan Alston & Anne Marie Hadley

Authors
  1. Reema Harrison
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  2. Maha Pervaz Iqbal
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  6. Rebecca Mitchell
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  8. Megan Alston
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  9. Anne Marie Hadley
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Contributions

RH, AM and MA conceptualised the study and designed the methodology. RH, AC, MPI and UC screened the articles for incusion. MPI, UC and CA extracted the data. RH, RM, EM MPI UC and CA created the first manuscript draft. All authors contributed to drafting and refining further versions and agreed on the final manuscript.

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Correspondence to Reema Harrison.

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Harrison, R., Iqbal, M.P., Chitkara, U. et al. Approaches for enhancing patient-reported experience measurement with ethnically diverse communities: a rapid evidence synthesis. Int J Equity Health 23, 26 (2024). https://doi.org/10.1186/s12939-024-02107-5

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  • DOI: https://doi.org/10.1186/s12939-024-02107-5

Keywords

International Journal for Equity in Health

ISSN: 1475-9276

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