Immigrant and ethnic minority patients` experiences in psychiatric care and substance abuse treatment – a scoping review

doi:10.21203/rs.3.rs-3310698/v1

Background

There is little evidence on experiences in psychiatric care and substance abuse treatment among patients with immigrant or ethnic minority background. Knowledge about their experiences is crucial in the development of equal and high-quality services and is needed to validate instruments applied in national patient experience surveys in Norway. The aim of this scoping review is to assess and summarize current evidence on immigrant and ethnic minorities` experiences in psychiatric care and substance abuse treatment in Europe.

Methods

We followed guidelines from the Joanna Briggs Institute and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. Search was carried out in Medline, Cinahl, Web of Science, Cochrane database of systematic reviews, Embase, and APA PsychInfo, up to Dec 2022. All articles were screened and extracted by two researchers and evidence summarized in tables and text.

Results

We included eight studies in the scoping review, all focusing on mental health care and one in addition on substance abuse treatment. Immigrant and ethnic minority background patients did differ from the general population in quantitative satisfaction questionnaires. However, qualitative studies showed that they experience a lack of understanding and respect of own culture and related needs, and difficulties in communication, which do not seem to be captured in questionnaire-based studies.

Conclusion

Raising awareness about the importance of respect and understanding for patients` cultural background and communication needs for treatment satisfaction should be addressed in future quality improvement work.

Psychiatric care

substance abuse treatment

immigrants

patient experiences

ethnic minority

Mental health issues represent a substantial share of contacts with health care services in high income countries and is a major public health issue (1). It`s prevalence is not evenly distributed across the population, and both self-reported levels and risk of diagnoses are higher in some groups of immigrants than in the general population (2-4). Substance abuse is another public health challenge, with a large proportion of untreated cases. Although rates of substance use disorders are lower among immigrants than in the general population, the prevalence converges towards that of the host population with time spent in the host country (5). Despite the elevated prevalence of mental health disorders among immigrants, the use of psychiatric care services is lower than in the majority population (6, 7). Engagement in substance abuse treatment is lower among immigrants than others (8). Reasons for differences in use of services by those with immigrant background may include practical barriers such as language, cultural barriers and stigma and low health literacy and knowledge of services, but also differences in quality of services and perceived benefit of treatment.

Patient experiences are an important aspect of quality of care and could inform service providers and policy makers of strengths, weaknesses and areas for improvement in the services (9). Good patient experiences are related to improved communication, correct diagnoses and adherence to therapy and can promote service user participation in own care (9). Studies assessing patient experiences with mental health care and substance abuse treatment have measured experiences related to interpersonal relationships, respect and dignity, access and care coordination, drug therapy, information, psychological care and care environment (10, 11). Most studies on experiences in mental health care and substance abuse treatment are carried out among patients from a majority background (12). However, needs and expectations and thus the experiences and satisfaction of patients are influenced by a range of factors, including knowledge about care, values and culture and sociodemographic factors (12). Some studies indicate that patients with an immigrant background have lower satisfaction with these services than others (12). Migrant populations may have expectations of care and explanatory models of mental health which differ from those of majority populations, traumatic life-events, migration-related stress, experiences of discrimination, cultural preferences and limited proficiency in host language influencing their experiences in health care. The knowledge on immigrant patients` experiences in mental health care and substance abuse treatment is fragmented and scarce. Knowledge about which elements immigrants regard as most important for the treatment to be useful and good for them is therefore needed to develop services which are equal and of high quality for all.

In Norway, continuous, electronical measurements of patient perceived quality in mental health services and substance abuse treatment have been carried out since 2020, as part of the national quality monitoring and improvement of health services (13). In developing these measurements further, one important aspect is to focus on experiences among immigrants. Specifically, this means to assess and include areas of special importance for immigrant patients in measurement tools, and to implement means to increase the response rate among immigrant patients (e.g. reduce the length of the questionnaire, offer translated versions). In a preliminary literature search we found no existing review on immigrant patients` experiences in mental health care or in substance abuse treatment. Thus, our objective was to synthesize evidence on experiences immigrant patients have in psychiatric care and substance abuse treatment in Europe and provide an overview of areas of particular importance to validate instruments applied in national patient experience surveys in Norway. Our research questions are: Which experiences do patients with immigrant and ethnic minority background have in psychiatric care and substance abuse treatment? Do their experiences differ from those of other patients? A scoping review is an evidence synthesis that identify and map the breadth of available evidence on a particular field and identifying key factors related to a concept (14). This makes scoping review a suitable approach to our research questions, which best can be answered by synthesizing evidence from a range of studies, including both quantitative and qualitative.

We have followed the Joanna Briggs Institute`s methodology for scoping reviews (15) and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (16) (Appendix 1). The protocol for the scoping review was published in Open Science Framework (http://osf.io/pce52/).

Search strategy

A previous literature search carried out for patient experiences in substance abuse treatment was used as a starting point for developing our search strategy (17), and search words and terms related to immigrant status or being an ethnic minority were included. The search strategy was developed by the authors in close collaboration with an experienced librarian at the Norwegian Institute of Public Health. The search strategy, including all identified keywords and index terms, was adapted for each included database (Full search strategy included in Appendix 2). The search was carried out in Medline, Cinahl, Web of Science, Cochrane database of systematic reviews, Embase, APA PsychInfo, up to Dec 2022. The final search was carried out 15.12.2022. We did not apply a starting date for our search. We limited out search to articles in English or a Scandinavian language, based on language competencies of the research team. Reference lists of included articles, as well as related reviews identified in the search, were screened for additional relevant studies.

All identified references were collated, uploaded into EndNote 20 and deduplicated. Titles and abstracts were screened by two of the authors (MKK, LED) for assessment against the inclusion criteria for the review. Potentially relevant articles were read in full text by the same two authors. Any disagreements between the reviewers at each stage of the selection process were resolved through discussion. The two authors agreed upon >98% of the articles based on title/abstract screening and all the articles in the full text screening. The results of the search and the study inclusion process, including reasons for exclusion after full-text screening is reported in Figure 1 and in Appendix 3, Supplementary table 1.

The scoping review includes peer-reviewed articles reporting from quantitative and qualitative studies on patient experiences and satisfaction in psychiatric and/or substance abuse treatment in Europe, and with a focus on patients with immigrant or ethnic minority background. We included studies both from inpatient and outpatient care and both former and current patients. In the protocol, we focused on experiences of immigrants in inpatient care. But as the number of articles reporting on this was low (N=3), we decided to widen our scope to include outpatient settings, and to also include ethnic minority patients with background from a country other than their country of residence (not indigenous people). Ethnic minorities may have lived in their country of residence for generations and do thus often not experience challenges related to being new in a country, such as language and lack of knowledge of the health systems. They may, however, face cultural differences in views of mental illness and treatment and discrimination based on their physical appearance or cultural traditions. A few references were focusing on differences by race in the US. As the sociocultural and historical context in Europe and the US is rather different, we have chosen to include only articles from Europe, and excluding those not from Europe. We included articles on patients 16 years or older, but not articles reporting experiences in children and adolescent mental health services. We excluded studies carried out in the general population and not focusing on specified service user groups.

All included articles were subjected to a data extraction procedure. We used an a priori extraction form, based on the JBI guidelines for scoping reviews (15) (Appendix 4), to systematically extract information from the studies. To ensure that all relevant information was extracted, two authors (MKK, LED) independently extracted information following the pre-defined categories; author, publication year, title, aim, country, context, participants, questionnaire applied (if relevant), domains of experiences assessed, results (main points). Any disagreement between the reviewers regarding extracted information details were resolved through authors discussing and agreeing upon what was of relevance for the scoping review. The extracted information was summarized in tables and a narrative synthesis.

A total of 1253 unique articles were identified through the database searches (Figure 1). After screening of titles and abstracts, 23 articles were read in full-text and of those 4 were included in the scoping review. In addition, 4 eligible articles were identified through references screening and included, giving a total of 8 included studies. The included articles are presented with some selected descriptive details in Appendix 3, supplementary table 2.

Description of included studies

Characteristics of the eight included articles in our scoping review are presented in table 1. Of the eight studies, five were quantitative (18-22) and three qualitative (23-25). Only one study reported patient experiences from substance abuse treatment and mental health care (25), the others from mental health care only. Three studies reported from an in-patient setting (18, 19, 21), four from both in-patient and out-patient settings (22-25) and one from out-patient setting only (20). Four studies were from the UK (18, 19, 23, 24), one from Denmark (20), one from Germany (22), one from Norway (25) and one reported from several countries (21). The studies were published in the period 1999-2022, with more than half (5 articles) published from 2019 onwards. The studies from the UK reported on experiences among ethnic minorities, and the other studies among migrants. The quantitative studies included between 216 and 7302 participants, and four studies included patients both with and without a migrant/ethnic minority background (18, 19, 21, 22), whereas one study included only immigrants (20). Two of the qualitative studies conducted individual interviews only (24, 25) and one did focus group sessions in addition to individual interviews (23). The number of participants in the qualitative studies varied between 8 and 26, and all three studies included immigrants or ethnic minorities only (23-25). The studies from UK focused on ethnic minorities (18, 19, 23), except one which focused on immigrants (24). The other studies focused on immigrants ( (20-22, 25), and the term immigrant most often included both immigrants and their descendants (first and second generation immigrants)

Table 1. Characteristics of included studies
Study characteristics	Number of studies	References
Study design
Quantitative	5	(18-22)
Qualitative	3	(23-25)

Context
Mental health care	8	(18-25)
Substance Abuse treatment	1	(25)

In-patient	3	(18, 19, 21)
Out-patient	1	(20)
Both in- and out-patient	4	(22-25)

Country
UK	4	(18, 19, 23, 24)
Germany	1	(22)
Norway	1	(25)
Denmark	1	(20)
Several (Germany, Belgium, UK, Poland and Italy)	1	(21)

Among the quantitative studies, 4 used an existing questionnaire for measuring patient experiences and satisfaction (18, 19, 21, 22) and one study used a new questionnaire that was developed based on the literature, other questionnaires, and clinical experience (20). Two studies included a question about satisfaction with mental health treatment in general (18, 20), and four made a score of overall satisfaction based on questions on experiences and satisfaction in multiple domains of the treatment (18, 19, 21, 22) (Table 2). Three studies specified satisfaction with medication and with other aspects of treatment (19, 21, 22). All studies included questions on experiences with staff and their professional and interpersonal skills. Three studies included questions regarding helpfulness of treatment and feeling better after treatment (19-21). Two studies included questions related to the ward and its social and physical qualities (18, 19), and two included satisfaction with information given (20, 22). Only one study (22) included questions on relatives involvement, and two on cultural aspects related to treatment (19, 20).

Among the qualitative studies, two assessed experiences with mental health services among patients with South Asian background in UK (23, 24), and one assessed experiences with Norwegian mental health or addiction services among persons living with co-occurring substance use disorder and mental health disorder and an immigrant background (first and second generation) (25).

Table 2. Use of questionnaires and domains assessed in quantitative studies
	Number of studies	References
Used existing questionnaire for patient experiences	4	(18, 19, 21, 22)
Developed own questionnaire for patient experiences	1	(20)

Single question about general satisfaction	2	(18, 20)
Composite measure of general satisfaction	4	(18, 19, 21, 22)

Included domains
Satisfaction with treatment	5	(18-22)
Staff (professional and interpersonal skills)	5	(18-22)
Medication	3	(19, 21, 22)
Treatment outcome/helpfulness of treatment	3	(19-21)
Ward (social and physical qualities)	2	(18, 19)
Satisfaction with information given	2	(20, 22)
Relatives involvement	1	(22)
Cultural aspects of treatment	2	(19, 20)

Synthesis of evidence

Comparison of satisfaction with services between patients with immigrant or ethnic minority background and majority background.

Two studies compared satisfaction with in-patient mental health treatment among White British patients and ethnic minority patients in UK (18, 19). One study found no ethnic differences in satisfaction with treatment, but that White patients reported more adverse events than others (18). The other found no ethnic differences in most domains (16 of 21) of treatment, but that Black patients were less likely than White to perceive that they receive the right treatment or get the right medication (19). Anderson et al (21) and Gaigl et al (22) compared experiences among mental health patients with and without a migration background, with diverging results. In a multisite study in both in- and out-patient settings across Germany, Italy, Poland, Belgium and UK, Anderson et al found that migrants were less satisfied with their treatment than non-migrants. In an in-patient setting in Germany, patients with a migrant background had higher overall satisfaction with treatment and with involvement of relatives (22), and first-generation immigrants had higher satisfaction overall and with the professionals, efficacy and involvement of relatives compared to the second-generation immigrants and non-immigrants. There are no studies to assess differences in patient experiences in mental health care between various immigrant groups.

Domains of care highlighted as important by immigrants and ethnic minorities

Cultural understanding and communication

In all the three qualitative studies, the importance of professionals understanding and respecting their cultural background was highlighted (23-25). Participants expressed that this was not in place when they had received treatment, and that this led to a lack of connection to the professionals and lower satisfaction with services. Some said that having a professional of same, or at least a minority, background, could have helped. Participants in the Norwegian study made a point that their needs were different from those of patients with the same diagnoses from the host population, and that the services were not tailored to meet their needs (25). In one quantitative study assessing experiences among patients of a non-Western refugee background in a competence centre for transcultural psychiatry (20), the satisfaction with the treatment was overall high, including the cultural understanding. The special setting could have helped to a high score on experiences with the professionals cultural understanding. Nevertheless, a perception of being met with respect for own culture was related to higher overall satisfaction, highlighting its importance for patients with an immigrant background. This dimension of care was not assessed in the other quantitative studies.

Patients of ethnic minority background in two qualitative studies expressed frustration related to communication, gaining a deep understanding of what was said, challenges in expressing themselves in the host language and the lack of interpreters (23, 24). Participants in one study also expressed a lack of information about diagnoses and treatment (24). In the quantitative studies, three of them described that participants had to be able to communicate in the host language to participate (19, 21, 22), and one offered interpreters and translated questionnaires (20). However, no questions on language and communication were included in questionnaires.

Relatives’ involvement and aftercare

In two of the qualitative studies, participants expressed that having relatives with them and supporting them was, or would have been helpful (24, 25). Participants also mentioned stigma related to mental illness in their communities and that raising awareness of these disorders and reducing stigma would help them seek treatment and benefit from it (23, 25).

Practical issues and service development

Some participants in qualitative studies mentioned that they experienced practical barriers to practice religion when being in treatment, e.g., having a place to pray (23). A concern was also raised that their voices were not heard in service development, which contributed to services less useful for them (23).

The limited number of quantitative studies comparing satisfaction scores between immigrant or ethnic minority patients and majority patients exhibit diverging methods and results, and do not provide evidence that immigrant or ethnic minority patients overall report poorer satisfaction with mental health treatment than the majority. However, evidence from qualitative studies suggests that immigrant patients experience a lack of understanding and respect of own culture and related needs, as well as difficulties in communication due to both cultural differences and language barriers. These issues were closely related to experiences of poorer satisfaction with mental health services. Importantly, these aspects were not captured in quantitative studies, except for one study from a competence centre for transcultural psychiatry (20).

Several of the aspects highlighted in the included studies, such as communication difficulties related to language and lack of insight, interest, and respect for the patient`s migration background by practitioners, have also been highlighted in studies conducted in general health care services (26). Issues of discrimination and an expressed wish to be treated as a person have also been raised (26). Thus, it seems that some of the areas of importance to immigrants in mental health care, also apply to other and more general parts of the health service system. Nevertheless, these are issues important to address in developing mental health and substance abuse care quality and in measuring perceived quality of this care. Overall satisfaction with primary health care services among immigrants vary across studies, like we have reported for mental health services in this scoping review. Some studies report lower satisfaction with primary health care services among immigrants than among others (27), whereas other studies report high satisfaction, including the perception of being met with respect for cultural background and own wishes (28, 29). Due to the heterogeneity and the relatively low number of included studies in this scoping review, it is not possible to draw any conclusions on differences in satisfaction with mental health services between immigrants and ethnic minorities. Potential differences could be due to differences in language proficiency, knowledge of the health care system and to expectations to the mental health care services.

Satisfaction is related to expectation. For example have Vietnamese immigrants in the UK been shown to report better satisfaction, but also lower expectations, to health care than others (30). Some studies have suggested the presence of a “happy migrant effect”, describing immigrants rating the quality of services as good because they compare it to bad experiences in their country of origin or during the migration process, or because of a feeling that they should have been thankful or have a poor self-esteem arising from language challenges (20). This could also be a current issue in mental health care, as immigrants come from very different health systems in their country of origin, sometimes non-existent in terms of mental health services. Our results did not show a consistently higher satisfaction among patients with an immigrant background. Therefore, it is not possible to draw any conclusions regarding how expectations may be influencing perceptions of the quality of mental health care.

It is generally expected that good patient experiences are associated with improved outcomes, as they contribute to a higher involvement of patients in own care through better communication, correct diagnoses, and adherence to therapy. However, the included studies do not provide a clear confirmation of this relationship. One of the studies included objective measures of treatment outcomes (21), while another study relied on self-report data (20). Anderson et al (21) found that despite immigrants reporting a slightly lower satisfaction with mental health services, there were no differences between immigrants and others in objective outcomes including length of stay, rehospitalizations or number of untoward events. In fact, immigrants even had a lower rate of suicide than non-immigrants. In a competence center for transcultural psychology, patients who experienced a subjective improvement also reported better satisfaction scores (20).

Strengths and limitations

The strengths of this study were a thorough search in six databases covering medicine and mental health literature. The authors have followed guidelines from the Joanna Briggs Institute and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review. We chose to include studies from Europe only, to limit the variation in political and social context, facilitating better generalization to the results to both the Norwegian and broader European context.

The studies from UK were rather old (1999, 2022, 2007, 2012) (18, 19, 23, 24), whereas the other were of more recent (2019–2022) (20–22, 25). Knowledge and practice in the field may have developed over the last 20 years, but there was nothing that stood out as a difference between the results of the older and newer studies. Only one study was found which focused on substance abuse treatment, where the participants had a co-occurring mental health and substance abuse disorder. Due to the lack of specific findings or conclusive evidence it was therefore difficult to make definitive statements about satisfaction with substance abuse treatment. Moreover, studies were carried out in both in-and out-patient settings, and each study had its own methodology and included questions. This further complicates drawing firm conclusion. Such variety, however, is part of the nature of scoping reviews. We included only scientific papers, and only papers published in English. By this, we may have lost relevant studies, but we assume that most relevant literature is published and available in English language. We did not perform a quality assessment of each paper, due to the broad nature of a scoping review and the varied nature of included studies.

Implications

Our rationale for carrying out this scoping review was to identify areas of special importance to patient satisfaction among immigrant patients in mental health care and substance abuse treatment, to ensure that our measurement tools are relevant and covers important aspects of care, also for immigrants. Our review reveal that aspects related to cultural appropriateness of services, language barriers and perceived respect for patients` background are important for satisfaction with services among immigrants, and that these aspects should be included also in quantitative measurements of patient experience and satisfaction in the future. Furthermore, these areas will be of importance in quality development of mental health services in an increasingly heterogenous Europe.

Our scoping review highlights a need to raise awareness about the importance of respect and understanding for patients` cultural background and communication needs in improving mental health and substance abuse treatment given to patients with an immigrant or ethnic minority background. For immigrants` needs to be included in service quality improvement, these aspects should also be taken into quantitative and routine measures of patient experiences.

Ethics approval and consent to participate

Not applicable

Consent for publication

Not applicable

Availability of data and materials

The scoping review is based on articles available in the databases searched.

Competing interests

We declare no competing of interest.

Funding

This scoping review is part of the project `A new generation of Patient-Reported Quality Measurements in Mental health and Addiction Services (PRQMs-MAS)`, funded by the Norwegian Research Council (project number 331891).

Authors' contributions

HHI and LHED conceived the idea for the article, MKK and LHED did reference screening and data extraction, MKK drafted the article and all authors (MKK, LHED, HHI, KES) contributed in revising the manuscript and interpreting the results.

Acknowledgements

We want to thank Ragnhild Agathe Tornes, librarian at the Norwegian Institute of Public Health, for valuable help with our search strategy.

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No competing interests reported.

Immigrant and ethnic minority patients` experiences in psychiatric care and substance abuse treatment – a scoping review

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Background

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