Experiences, perceptions and expectations of health services amongst marginalized populations in urban Australia: A meta‐ethnographic review of the literature

Abstract Background Poor health outcomes amongst marginalized groups result in part from health inequities related to social and structural determinants of health. Marginalized people report higher incidences of comorbidities, chronic disease and adverse health behaviours than their nondisadvantaged peers. The objective of this review is to examine marginalized Australians' experiences of and access to community‐based primary health services in urban locations. Methods A systematic search incorporating related MeSH terms and synonyms pertaining to marginalized Australian populations and their health‐seeking was conducted across seven databases. We included qualitative studies that reported experiences of health‐seeking within community‐based primary health care in metropolitan Australia. Participant populations experiencing marginalization due to social stigma and isolation, early‐life disadvantage, poor health and/or financial hardship were included. A meta‐ethnographic framework was used to synthesize themes across selected studies and researcher triangulation was employed to develop higher‐order themes. Results Search results revealed 26 studies included for critical appraisal and synthesis. Seven higher‐order themes were developed describing experiences of health service engagement amongst marginalized groups: (1) Understanding the patient within the context of family and community, (2) Health and cultural beliefs influence health‐seeking, (3) Lack of information and poor cultural competence limit utilization of services, (4) Motivation for treatment influences health service engagement, (5) Accessing services, a spectrum of experience—from discrimination to validation, (6) Navigating a complex system in a complex society, (7) Preferences for health care and expectations for systemic change. Conclusion Marginalized Australians experience health disadvantage across micro, meso and macro levels of health system navigation and commonalities in health‐seeking were identified across each of the distinct marginalized groups in our analysis. This review outlines important areas of consideration for health care provision and policy development essential to helping address health inequities for a diversity of marginalized populations. Patient or Public Contribution Whilst patient voices were reported across all studies included within this review, no further patient or public contribution applies to this study.


| INTRODUCTION
Health inequality and subsequent disparities that result from inequitable access to essential health services are recognized as important social and public health challenges. 1 Disadvantaged populations-such as asylum seekers, refugees, indigenous peoples, ethnic or sexual minorities and the homeless-face marginalization in a complex and sometimes punitive health care system, 2-4 contributing to consistently poor health outcomes compared to their nondisadvantaged peers. 2,3 Marginalized people, defined as 'populations outside of mainstream society' 5 are frequently stigmatized in their health-seeking and are reported to commonly receive poor quality or inappropriate health care that fails to adequately meet their needs. 2,3,6 Globally, evidence of a significant increase in the awareness of social determinants and their relationship to health has been reported in medical research over the past 10 years. 4 In Australia, the monitoring of social determinants and the distribution of health across social groups has been prioritized at the policy level. 7 For many Australians, complex health needs, cultural and socioeconomic factors or geographical location may affect their ability to access health services. 7 Furthermore, people living in the lowest socioeconomic or rural/remote areas, those with a disability and those who identify as Aboriginal and Torres Strait Islander, experience higher rates of illness, hospitalization and morbidity than other Australians. 7 Health policies focussed on 'closing the gap' between indigenous and nonindigenous health outcomes have been unable to meet targets while chronic disease burdens and multimorbidities continue to be recorded at disproportionate levels. 2,7 Similarly, growing numbers of homeless and 'at risk' youth signify increasing intergenerational disadvantage and poverty 3,6 while recent census data recorded 58% of Australians experiencing homelessness were below 35 years of age. 7 Population health analysis shows Australians from low socioeconomic backgrounds fare worse concerning health risk factors and chronic health conditions, such as diabetes, cancer, stroke and anxiety. 7 Low health literacy places an unfair burden on racial and ethnic minority, CALD and refugee and asylum seeker populations. Consequently, these groups risk poor health outcomes and adverse health behaviours due to misunderstanding, which results in decreased engagement with services, 7 further contributing to poor health status and subsequent health inequalities. 7 Primary health care (PHC) constitutes the frontline of Australia's health care system, delivering services outside a hospital environment, often in a community setting without the need for referrals. These services, funded through the Medicare Benefits Scheme additional to government, nongovernment, private and philanthropic sources, are often the main or sole contact point between the marginalized and formal health care provision. Access to PHC services has been confirmed as improving population health outcomes and reducing inequality 7 highlighting the important role of PHC professionals in addressing the health care needs of marginalized groups. However, Australia trails behind other high-income nations in training and preparing all health professionals to provide culturally responsive health care. 2 Concepts of cultural competency and culturally responsive communication have been outlined as essential skills for health care providers to reduce health disparities. 2,8 Culturally responsive communication, a cornerstone of person-centred care, is defined as 'communicating with awareness and knowledge of cultural differences and attempting to accommodate those differences' and is inclusive of linguistic, cultural, racial/ethnic, religious and sexual diversity. 8 Understanding the experiences of marginalized groups in their health-seeking is imperative for health workers to be able to provide equitable and best-practice care for those disadvantaged by the existing health system. Encouraging further consideration of the racial, cultural, sexual, linguistic and religious diversity of health care users helps promote quality person-centred care that helps meet the complex needs of the marginalized. 9 Previous international research has outlined the need to address interventions for marginalized and excluded populations as a whole, rather than focussing on subpopulations defined by singular risk factors and needs. 3 Literature reviews detailing extensive research into the health care experiences of various subpopulations of marginalized Australians 10,11 highlight a gap in enquiry with particular reference to health care experiences across marginalized populations as a whole. In response, the following review seeks to fill this study gap and address a 'defined need' by using a wider lens to explore themes of health care experience across these populations.

| Aim and objectives
This meta-ethnography aims to explore the health care experiences of diverse groups of marginalized populations within Australia. Specifically, this study seeks to understand what marginalized groups are reporting about their experiences of and access to urban PHC.
Through the collection, collating and appraisal of reported experience, this review aims to provide a useful interpretation of health service engagement across marginalized Australian populations.

| Methodology
Meta-ethnography, well established in health policy and strategy research, 12 provided the methodological framework for this enquiry to assess and collate consumer experiences of health service provision and, most importantly, give 'voice' to these experiences. 12,13 The philosophical underpinnings and approach to this ethnographical research are drawn from an interpretivist paradigm 13 and reference activist and candidacy frameworks in advocating for the marginalized.
Guidance in the reporting of this review was derived from the eMERGe guidelines, 12 which aim to help inform the improvement of service-user outcomes within the health field. 12 We followed the seven-phase process for conducting a meta-ethnography conceptualized by Noblit and Hare 13 and elucidated upon it in recent literature. 14 Meta-ethnography diverges from other forms of qualitative synthesis by reinterpreting conceptual (primary) themes from individual studies and translating and synthesizing these studies through the development of higher-order themes. 13

| Search strategy
The search strategy for this meta-ethnography incorporated the following four themes: health services, vulnerable or disadvantaged populations, experiences or perceptions and Australian-based studies. Synonyms and MeSH terms relevant to the four themes were applied as shown in Table 2. Databases searched by K. B. included Informit, Medline, Scopus, PsychInfo, Embase, AMED and CINAHL, details can be found in the Supporting Information (Appendix S1).
Searches were limited to peer-reviewed scholarly articles and papers reported in the English language.

| Eligibility criteria
Papers were included if they: (1) reported new empirical data; (2) focused on the experiences and perceptions of marginalized patients/communities regarding their perspectives of community-based urban PHC; (3) were collected in Australian settings; (4) the sample population qualified for at least two of the five listed Domains of Disadvantage identified by previous authors 15 chosen to define marginalization for the purposes of this review (refer to Figure 1). 15 We excluded home-delivered care or health services accessed within prison environments or other institutions, such as detention centres, aged or other care facilities and schools as well as papers reporting on paediatric, palliative, geriatric, emergency, midwifery and antinatal care. Additionally, we excluded health promotion interventions targeted at marginalized groups within the broader community as well as within school environments.

| Screening and selection
An initial pool of 2256 citations was retrieved for systematic refinement and review and uploaded into reference-management software (Endnote X9). Titles were screened against eligibility criteria by K. B. Seventy-five original research articles reporting on marginalized populations met our inclusion criteria. Of these, the 32 quantitative papers were excluded and upon in-depth reading of the remaining studies, K. B., A. S. and J. A. agreed to exclude 14 papers that did not meet the inclusion criteria for this study. The search process for this meta-ethnography concluded with a review and synthesis of 26 qualitative papers.

| Data extraction
All studies included in the synthesis were printed in full and handannotated during the critical reading phase by K. B. These same files were uploaded to NVivo software with Stage 1 descriptive codingsummarizing the topic of textual passage-performed independently by K. B. and shared with A. S. and J. A. We aimed to triangulate the second-stage coding process to ensure the accuracy of coding and consistency of theme development. Each researcher identified and recorded concepts themes and metaphors from each full primary study. Data were extrapolated in the form of the authors' concepts and themes from primary studies as well as quotes (in vivo coding) from study participants. The Stage 2 coding process identified final overarching concepts and themes. Characteristics of included studies are outlined in Table 3. The CASP checklist was used for the assessment of quality amongst included studies. 16,17 It indicated that all papers included for synthesis were of value to the research enquiry despite some discrepancies in strengths and weaknesses pertaining to the quality of reporting or methodological clarity. The critical appraisal was conducted by one reviewer (K. B.) and checked by A. S. and is detailed in Table 4.

| Data analysis
The participant characteristics of the primary studies were compared by K. B. to determine how they related. The ethnography aimed to T A B L E 1 Application of the seven phases for meta-ethnography

| FINDINGS
The 26 original research articles included in this review (search process results are outlined in Figure 2) incorporate a variety of study designs and their findings give insight into the experiences and perceptions of health service use amongst a representative crosssection of marginalized groups within Australia. Seven main themes were revealed in our analysis and echoed across all six of the diverse participant populations included in this synthesis, highlighting consistent reciprocal transition in the translation process-where each study supports in part or whole the findings of the other studies within the pool. 12 Together these seven themes (collated in Table 5) tell a story of the contemporary health-seeking experience of marginalized Australians. This new interpretation or conceptual  Figure 3. To aid clarity, each included study outlined in the below text is referred to by a number (as allocated in Table 3).

| Understanding the patient within the context of family and community
Women who had little or no support from family or friends faced the most difficulties and, often, had worse linkages to health services. 20 The role of the individual within the family and the impacts of support or lack thereof from family and community regarding healthseeking was a pervasive narrative across each of the marginalized subgroups reported on in the reviewed literature (2, 8, 12, 13, 15-17, 19, 20, 22-25).
The literature illustrated that connection to family and community played a key role in motivating participant populations in their engagement with health services (12,13,(23)(24)(25), though perceptions of connectedness to family and community could also perpetuate adverse health behaviours, such as problematic substance use (20,23). Fears of exclusion from family and community or the shame that many participants reported in relation to aspects of health and health-seeking were primary concerns for many participant populations (8,12,17,20,23,25). A concern for 'saving face' was noted as a theme amongst some ethnic minority populations in our analysis (12,17,20). Seeking health care and information for stigmatized diseases, such as hepatitis C virus (HCV) (20,21,24,25), HIV (18,23), mental illness (16,17), sexual and reproductive health problems (8,11,12)  states: 'To maintain health here will depend on our own resilience and resourcefulness because in the Philippines we have many family and friends who will invite us out and push us to be healthier (Julieta)'. 21

| Health and cultural beliefs influence health-seeking
If they are ill, they will go to the fortune teller (thaˆ~y bo´i  Focus groups + in-depth interviews interpretive influenced by a critical paradigm using design of conflict theory Gender-specific expectations signalled reduced opportunities and subsequent disadvantages in health-seeking for women (8, 11-13, 17, 18). Eight of the studies included in our analysis report on women from CALD or refugee backgrounds and their disadvantage in accessing health services (8, 10-13, 15, 18, 19). These participants Was the research design appropriate to address the aims of the research?
Was the recruitment strategy appropriate to the aims of the research?
Was the data collected in a way that addressed Was the data analysis sufficiently rigorous?

| Cultural competence & language barriers
Complicated explanations and excessive jargon created feelings of disengagement and discontent. 28 Consideration of culturally responsive care was identified as lacking in a number of studies included in our analysis (13,15,16,19,22) where participants reported discriminatory attitudes by staff (22) or interpreters communicating in the wrong dialect (9). In their study, Kendall  Outlines the barriers and facilitators to health service access.
Describes impacts of racism and judgement that further compound barriers to access along with experiences of care and support, validating participant populations in their healthseeking experience. Identifies the importance of co-ordinated care models, particularly the alliance of health and social care, in aiding service access gender diverse people, described by two of the study cohorts representing disadvantaged youth populations (5,8 The reviewed literature shows that confused messaging resulted in missed opportunities for timely treatment (21), convoluted referral processes (21), hidden and prohibitive costs (8,21) and forgone care (5) for the marginalized and socioeconomically disadvantaged. Numerous participant groups reported on in the included studies claimed incorrect knowledge about aspects of health prevention, illness and disease leading to confusion and misunderstanding (9,11,14,18,19,21,24). Misinformation concerning treatment for some diseases, such as diabetes, sexual and reproductive health (11,12,24) or blood-borne viruses, such as HCV or HIV was also reported in the literature (11,12,18,21,24). In some instances, the research identified the source of information from health care providers was profoundly lacking (5,14,18,24) or misinformed (18,21) while clear needs for improved communication from physicians-relating diagnoses and disease management to patients-were highlighted by study authors from our analysis (7,14,15,18,24).

| Motivation for treatment influences health service engagement
You don't want to waste your chance and stuff it up.
Because at the moment, to be truthful, I'm not ready to stop using yet. (Noi, 28-year-old Lao-Australian male) 31 Perceived success in health-seeking amongst the populations represented within this review was related to opportunities that arose in particular contexts. Examples include instances when the availability of care was found beyond the scope of 'normal' operating T A B L E 5 (Continued) spiritual and psychological aspects as well as the physical bodyas a preferred model of care for the marginalized. Participants expressed a desire for improved health education and the expectation that changing existing models of care to provide culturally appropriate services incorporating health promotion within communities, can have wide-reaching and significant positive impacts amongst these populations a Corresponding first author ID and study details can be found in the data summary table (Table 3). Motivation for treatment of substance abuse was reported with enthusiasm amongst some participants (21) but was approached with F I G U R E 3 Framework outlining spheres of influence and related conceptual themes of health service engagement amongst marginalized Australians equal measures of wariness and pragmatism by individuals who were concerned about side effects, being ready to quit and getting the timing of subsidized treatment right (20,21,24). Amongst Filipino, Thai and Chinese Australians there was a reluctance to seek help for mental health concerns (15,17,19). Across the studies included in this synthesis, reports of treatment motivation and patient satisfaction were higher for services that were founded/developed for specific populations, such as refugee and asylum seekers (10) and Aboriginal Community-controlled Health Organisations (3, 22 You know yourself. You been there too many times' (Pack, 29-yearold Lao-Australian male). 31 3.4.2 | Self-efficacy and empowerment I always went on the fact that as long as I look after my liver I will be alright, so that was when I went nil alcohol or anything to make sure my liver was strong-I sort of took the treatment on myself. 29 Degrees of self-efficacy and empowerment pertaining to healthseeking were reported across 12 of the included studies (1, 2, 4-6, 8, 12, 14, 16, 19, 23-25). Notable within this theme are narratives of empowerment to disengage from services or processes (5, 6), self-advocacy within the patient/doctor dynamic (14) and consumer rights to give feedback and lodge complaints (4). Study authors reported empowerment of participant populations after positive experiences of support through engagement with health workers or services (1,2,8,14,16).
The reported empowerment of refugee youth (12) and indigenous peoples (23)(24)(25) who asserted locus of control over health behaviours and management of the disease is significant.
3.5 | Accessing services-A spectrum of experience, from discrimination to validation …so whenever they saw that we are wearing the scarf…they judge [us]. (Female, 18 years, refugee) 32 Stories of health service access amongst our study populations were marked by opposing themes of discrimination (1, 2, 3, 5-8, 13, 17, 20) and validation (6,7,10). Study authors reported themes of 'feeling like I mattered' (7) and feeling heard, that validated study participants' rights to access services. Equally, perceived judgement, discrimination, racism and the use of 'labelling' (5,7,17) to dismiss the concerns of health-seeking individuals (as described by participants), reinforced barriers to health care access and contributed to forgone care, perpetuating and entrenching marginalization. In our analysis study, authors identified stigma as a barrier to accessing health services and treatment for marginalized populations with chronic illness, low socioeconomic status, culturally diverse backgrounds, histories of incarceration or problematic substance use (1,2,8,16,24). As a result of the participant reported discrimination faced by the range of subgroups within our marginalized study populations (1-3, 5-8, 13, 20, 21) we identified that attitudes of staff and health care providers towards marginalized persons attempting access to services was significant and influential across this review cohort. Additionally, authors observed that successfully challenging entrenched stigma and forging legitimate claims to care were often seen as turning points in experiences of health care access (1,2,14,20). In our analysis, the use of technology, such as the internet and social media, was recognized as an aid to health service access (5,8,11,19): 'I like when booking and that kind of stuff is online… talking on the phone's very alien to me… I prefer not to. So, I like to be able to manage appointments and all that kind of stuff online' (Female, 23  Negotiating the health care system was described as confusing, intimidating and overwhelming by many of the participant populations included in this review (3,8,13,15,16,21 For the marginalized populations in our analysis, systemic obstacles, such as eligibility criteria (6,18,21); lack of service integration (4, 6); referral processes (2,21); discrimination (3,5,21); negotiating welfare, disability or child support (2,4,21); protracted waiting times (2,20,21,24) and cost (3,13,15,21)-often prohibitive and hidden 32 -were compounded by social and structural determinants such as education and health literacy (8,24); age and gender/ identity (5,6,8,13); cultural background (13,18,20,21,24); transport availability (3,4); housing/accommodation (3,21) and available or accessible services.
Despite the overarching theme of complexity and difficulty in navigating the Australian health system described by authors of many of the studies, three participant populations from CALD backgrounds reported favourably on their experiences of health system navigation compared to their country of origin (10,15,19 Nine of the studies included in this review outlined the importance of community-based outreach, education and health promotion (4,5,8,11,16,17,26). Requests from participants for educating families, spiritual leaders (16,17,19) and whole communities about mental illness and sexual and reproductive health were perceived as instrumental to support marginalized health seekers from refugee and CALD backgrounds (11,16,17) as well as sexual minority youth populations (5). Marginalized youth and indigenous health seekers mentioned the need for improved explanations and education concerning diagnoses, disease processes and prevention from health care providers (8,22,24). system. Consistent and compelling evidence that health is shaped by social determinants 4 means that aiding marginalized people in their health-seeking commonly requires coordinated input from a range of services. In community settings, social services can be a vital element in facilitating access to health care for the marginalized. 6 Social care has been defined as 'services that address health-related social risk factors and social needs'. 4 Multiple factors, such as homelessness, illiteracy, poverty, accessibility and transport issues, additional to needs specific to individuals of diverse sociocultural backgrounds,

| CONCLUSION
Marginalized populations in Australia experience inequalities and barriers to health care across micro, meso and macro levels of system navigation. There is a need to improve health literacy and support the provision of culturally responsive communication, and these changes need to be addressed as interdependent elements within health systems if health inequalities are to be tackled. Furthermore, integrated health and social care may be central to meeting the myriad and complex needs of marginalized and disadvantaged groups. The populations represented by this analysis are diverse, though their collective experiences provide a compelling narrative that unites them in their health-seeking.