Systematic Review of Ethnicity and Health Service Access for London

Systematic review of ethnicity and health service access for London

FINAL REPORT

Centre for Health Services Studies (CHESS)

University of Warwick

and

Mary Seacole Research Centre (MSRC)

De Montfort University

and

Centre for Research in Ethnic Relations (CRER)

University of Warwick

Systematic review of

ethnicity and health

service access

for London

Project Team:

Dr Mark Atkinson1

Michael Clark4

Diane Clay4

Dr Mark Johnson2

Dr David Owen3

Professor Ala Szczepura4

February 2001

Commissioned by the London Regional

Office of the NHS Executive

All communication to:

Professor Ala Szczepura

Centre for Health Services Studies

University of Warwick

Coventry CV4 7AL

Tel: 02476 – 522958 Fax: 02476 - 524963

ISBN 0 9535430 0 6

1. Department of Health and Continuing Professional Studies, De Montfort University

2. Mary Seacole Research Centre (MSRC), De Montfort University

3. Centre for Research in Ethnic Relations (CRER), University of Warwick

4. Centre for Health Services Studies (CHESS), University of Warwick

CONTENTS

Contents...... / I - II
Acknowledgements…...... / III
Executive Summary…...... / IV
Section One:
1 Introduction...... / 1
1.1 Background...... / 1
1.2 Access…………………...... / 2
1.3 Defining ethnicity and ethnic group...... / 3
Section Two:
2 Study Outline...... / 6
Aims and Objectives / 6
2.1 Literature search strategy (published articles)………...... / 6
2.2 Search of other databases….…………………...... …... / 9
2.3 Identification of 'grey' literature……..……………………...... / 10
2.4 Inclusion criteria for review...... / 10
2.5 Data extraction and quality assessment of papers included in review...... / 12
2.6 Identification of current research and development...... / 13
Section Three:
3 Results...... / 15
3.1 Overview of literature reviewed………...... / 15
3.2 Clinical Areas: Literature relevant to access……………...... / 19
3.2.1 Sexually transmitted disease…………..……...... / 19
3.2.2 Cancer and palliative care…………..…………...... / 21
3.2.3 Diabetes/ renal……..…………...…...... / 24
3.2.4 Ethnic specific conditions………..……...... / 27
3.2.5 Mental health……………..………...... / 31
3.2.6 Circulatory and cardiovascular disease…………...... / 36
3.2.7 Respiratory disease…... / 39
3.2.8 Miscellaneous………………………...... / 41
3.3 Services and General Issues: Literature relevant to access…. / 45
3.3.1 Mother and child (Women's health)……...... / 45
3.3.2 Elderly…….…………...... / 49
3.3.3 Interpretation, language and translation…………...... / 51
3.3.4 Primary care………………………………………… / 56
3.3.5 Health improvement/ promotion…………………...... / 61
3.3.6 Non-permanent population.………………………… / 69
3.3.7 General access issues……..…………………… / 76
3.4 Overview of research and development in progress…...……...... / 86
3.4.1 Databases………………...... / 86
3.4.2 Current R&D……………...... / 87
3.4.3 Forthcoming R&D….……..……………………...... / 90
Section Four:
4 Demographic context...…………...... / 92
4.1 Introduction…………….……………...... ……...... / 92
4.2 Ethnic population projections………………………………..... / 92
4.3 Refugees/ asylum seekers…………………….…. / 96
4.4 Estimate of language needs by health authority………...…...... … / 98
Section Five:
5 Discussion and conclusions.…………...... / 100
5.1 Introduction………………………………………...... / 100
5.2 Overview of research evidence base.………………………………...... / 100
5.2.1 Demographic context………… / 101
5.2.2 General access issues…………...... / 102
5.2.3 Interpretation, language and translation…...... / 104
5.2.4 Health improvement/ health promotion…...... / 105
5.2.5 Primary care………….…...... / 106
5.2.6 Mother and child (Women's health)……..…...... / 108
5.2.7 Elderly………...... / 110
5.2.8 Non permanent populations………..………………...... / 111
5.2.9 Sexually transmitted disease…….…………… / 113
5.2.10 Cancer…………...... / 115
5.2.11 Diabetes/ renal…………..………………… / 117
5.2.12 Ethnic specific conditions………..…...... / 118
5.2.13 Mental health………...... / 120
5.2.14 Circulatory and cardiovascular disease…...... / 122
5.2.15 Respiratory disease…………..…...... / 124
5.2.16 Miscellaneous………...... / 126
5.3 Overview of demonstration projects……………..……...... / 128
5.3.1 Summary and main findings/ outcomes…….…….……...... / 130
5.4 Final conclusions and recommendations……………...... / 132
5.4.1 Important dimensions associated with access……...... / 132
5.4.2 Final key messages…….………...... / 133
Annexes:
1. Key issues and priorities identified by London-based ‘ethnic health’ reports. / i
2. Trial literature search strategies……...……...... / ii
3. Data extraction sheet…………...... / viii
Bibliographies:
List of all 'A' grade published and grey literature, arranged by chapter heading. / ix
Master reference list……………….... / xi

Acknowledgements.

The project team would like to express their sincere thanks for the help provided by Professor Michael Chan, who acted as external advisor to the project. We would also like to thank staff employed at the health authorities, trusts, and service provider organisations who provided us with copies of reports and papers included in the review. Without the help and co-operation of a large number of such individuals this report would not have been possible.

1

Systematic review of ethnicity and health service access for London

Executive Summary

1. Aims and objectives

The main aims and objectives of the study were :

• to conduct a systematic review of available literature (academic papers and ‘grey’ literature) in order to produce an overview of current findings in relation to ethnicity and health service access;

• to provide relevant information on the demographic profile of London, and a brief commentary on how this is predicted to change over the coming decade to inform interpretation of the review;

• to identify gaps in the available research evidence and make recommendations for further research.

The review was commissioned by the London Regional Office of the NHS Executive to inform the development of a research and development plan for ethnic minority health in London. The study was carried out over a 6 month period (March to September 2000).

2. The study outline

2.1 Literature review

The systematic review of relevant literatures which was carried out consisted of three stages: a literature search and selection of articles; quality assessment of papers identified; and data extraction and synthesis. Literature searches were conducted by a trained information scientist using a systematic search strategy.

2.1aMedline searches:

Articles were limited to English language publications. Initial search strategies were tested, looking at 'access' and 'ethnicity' using the MeSH terms available and a combination of other key words. These were refined and a final systematic literature search undertaken. This was supplemented by ‘hand-searching’ of recent issues of selected journals. These searches produced in excess of 2,000 potential papers for review, once repeat hits had been excluded.

2.1bSearch of other databases

Searches were also performed on other databases, including the Department of Health, King’s Fund and Nuffield Institute for Health in Leeds (HMIC); the Cochrane database; the Warwick Centre for Research in Ethnic Relations (CRER) database ( the CINAHL (Nursing and related studies) bibliographic database; the National Institute for Clinical Excellence (NICE) database; and others. Those articles or projects which had not already been located in other databases were added to the review process.

2.1cIdentification of grey literature

Previous studies have demonstrated the significance of grey literature to studies of minority ethnic groups. In order to gather relevant grey literature, letters were sent to all health authorities, trusts and local authority social service departments in the London region requesting copies of any relevant reports or grey literature. Similar letters were sent to agencies identified from previous work or in a 'web search' as being actively developing ethnic health research. In total over thirty responses were received, including lists of current research submitted by several London health trusts.

2.2Inclusion criteria for review

A pragmatic two stage process was then adopted for selection of papers for inclusion in the review.

2.2aFirst stage of process for selecting papers for entry into review:

An article was considered for inclusion in the review if it:

• provided an abstract (so that a decision could be made on content);

• the abstract contained a substantial reference to ethnicity and;
• the abstract contained a substantial reference to access and;
• the abstract indicated that the paper might be generalisable / applicable to a London/UK setting.

Because of the large number of papers identified (2,000 plus), a publication date of January 1st 1995 was used as the date filter for the final review. Earlier papers were only included if more than one member of the research team identified a particular article as 'seminal' i.e. a well cited article which contributed substantively to the review. All abstracts of articles which passed this initial test were then scrutinised once again by the review team.

2.2bSecond stage of process for selecting papers for entry into review:

A two step approach was adopted for filtering the papers identified above. First, all articles were read and selected exclusion criteria were applied by two independent readers; a paper was excluded if:

• ethnic minorities or ethnicity ‘mentioned in passing’ and not a significant focus

• no mention of access and/or (differential) uptake of services

• not generalisable/appropriate to London/UK (settings or groups examined)

In addition, a decision was taken to include all reviews which were identified. Secondly, a final filter stage was used to grade papers in terms of their quality and content into 'A' type (enter full review) and 'B' type (record details but do not include in review).

The same selection process was undertaken for all the ‘grey' literature retrieved.

At the end of this procedure, a total of 386 articles and papers were finally categorised as 'A' or 'B' grade literature. Of these, 179 were graded as 'A'; 129 published articles and 50 grey literature items. A further 207 were categorised as 'B' grade literature; 177 published articles and 30 grey items. A ‘master bibliography’ of the papers identified during the review process as of relevance to aspects of the review was also developed. By the end of the study, this contained 449 published articles and grey literature papers.

2.3Identification of current research and development

Databases were also searched for evidence of relevant ‘current and recent’ research. These included the NHS National Research Register (NRR), CHAIN database (London Region health research network), the Department of Health Research Findings Electronic Register (ReFeR), as well as linkages with other researchers known to the review team.

In addition to identifying research in progress through these various registers, the project team also gathered information directly from the Improving Health Among Ethnic Minority Populations Initiative which was funded by the NHSE to build on the work of the NHS Ethnic Health Unit. Letters were sent to all nine demonstration projects funded as part of this initiative in order to gather detailed information on progress, including any documentary evidence of findings.

3. Demographic context

A short contextual (demographic) analysis was also carried out to examine the changing structure of the population in London. This was based on the London Research Centre’s 1998 projections of the population forward to the year 2011 by age, sex and ethnic group. Two variants of projections were produced. The results presented in this report are based on a projection of migration trends forward, which is not constrained by the dwelling stock. This was chosen because it is likely that migration will be an increasingly important component of population change, and hence a higher projection level of migration was viewed as being more realistic. In addition, mortality and morbidity data available via the Health of Londoners Project were also examined where appropriate.

4. Results

4.1 Overview of Demographic Context

During the 1990s, population patterns by ethnic group have shown a fairly rapid shift in the balance of the population away from white and towards the minority ethnic groups, with an increase from just over a fifth in 1991 to nearly a quarter in 2001. It is predicted that this large increase will be followed by a much slower growth of the minority population during the next decade, to just over a quarter by 2011. Different ethnic groups have experienced varying rates of increase in the 1990s; in the next ten years, the Black-African and Other-Asian populations are both projected to grow by a further quarter (26% and 25% respectively). There have also been increases in the population of refugee origin, but no reliable data exist to comment on their composition; nor is the impact of recent policy changes predictable. Current estimates suggest that around 250,000 refugees and asylum seekers live in London, mostly in the inner areas, particularly in the Health Authority areas of East London & City, Ealing Hammersmith & Hounslow, Kensington Chelsea & Westminster, and Camden & Islington. Sources of these migrants vary, but presently most are predominantly of Turkish/Kurdish/Iraqi, and North-East African origin.

There is a 'maturing' of the minority ethnic population, with an increasing number of increasingly old people. In particular, over the next decade, the difference between proportions of the population aged over 60-65 will equalise.

At the level of individual districts, total population growth has been, and is projected to be, fastest in western and Central London and slowest in east London. For people from minority ethnic groups, however, the pattern is somewhat different. A process of suburbanisation is evident, with the highest rates of population increase projected in outer areas of London. Most rapid increases in the next decade are predicted in the South-West (KingstonRichmond), the West (Hillingdon) and the East (Barking & Havering) with increases of over one fifth.

Ethnic diversity is inevitably associated with language need. London is reputed to have ‘over 300 languages spoken’ in its schools. Basing estimates on birthplace (1991 Census) provides a 1996 projection of about 170,000 people with ‘language difficulties’ likely to require interpreter support. One in five of these are found in East London & City, and relatively large groups are also located in seven other districts. In all of these areas, the proportion of the population likely to need language support services exceeds 2 per cent. Future need will depend on refugee and asylum seeker settlement flows, and on loss of acquired language skills in ethnic elders.

4.2 Overview of the literature reviewed

Following examination of the articles and reports selected for full review, a number of clear topic areas emerged. This enabled the literature to be ordered into 15 groupings or 'chapters'. These included seven 'clinical' areas which were ordered in a similar sequence to that used in the international disease classification (ICD-10). In addition, there were seven groupings or 'chapters' which were best described as 'service' areas. These included primary care; interpretation, language and translation services; and health improvement/ promotion. A final group consisted of papers which related to general access issues rather than a specific disease or service area.

The highest overall level of activity (published and grey) was to be found in two 'chapters': 'General Access Issues' and 'Miscellaneous - disease relevant'. The majority of these papers were designated 'B' grade, and therefore not included in the final review. After this, the major overall research activity was located in 4 main areas: Mental Health; Mother and Child; Primary Care; and Health Improvement/ Promotion.

The total number of 'A' grade papers (published and grey literature) was highest in four slightly different areas: Health Improvement/ Promotion (26 papers); General Access Issues (25 papers); Primary Care (20 papers); and Non-permanent Populations (17 papers). If only published papers are considered, then Mental Health (15 papers) would replace Non-permanent populations. Apart from the areas above, the number of 'A' category publications identified by the literature search proved to be fewer than 10 in each area.

4.2.1 General Access Issues

The review identified a total of 64 papers on general access issues. Although the majority were not suitable, 17 peer-reviewed and 8 grey literature papers were included in the review as illustrating important general access issues. The main findings in this area were a need for: better quality information from ethnic monitoring activity; more research on processes, since the majority of studies have concentrated on demonstrating inequality without seeking alternative explanations for the observed outcomes; investigation of ‘supply side' questions, including attention to the ‘incidental’ or ‘accidental’ impacts of continuing health service re-organisation; exploration of the extent to which effects might be explained by social factors other than ‘race’ or ethnicity.

Implications for policy makers and practitioners: The main underlying issue, if access to services is to be adequately assessed, is the need for improved ethnic record keeping and monitoring.

4.2.2 Interpretation, Language and Translation (ILT)

The review identified a total of 16 papers in this topic area. The majority (11) were in the peer-reviewed literature, but only 3 met the review entry criteria, compared to 3 out of 5 grey literature papers. The main findings were a need for: research into changing patterns of language need to inform models of planning and service provision; better evidence of positive improvements in clinical or health-related outcomes following provision of ILT services; research into staff usage of interpreters and their effect on the consultation; investigation of the value and impact of telephone based (‘language line’) interpretation and information giving.

Implications for policy makers and practitioners: The new NHS Plan refers to the development of interpreting services available to all Trusts and service users through NHS Direct. It will be important to ensure that as provision is rolled out, a careful auditing of use by language and preferred language choice is maintained. Particularly important in London will be monitoring following the arrival of new groups. Collaborative development across London of standards and models of ILT provision is required.

4.2.3 Health Improvement/Health Promotion

A total of 33 papers were identified, predominantly peer reviewed (26) and mostly of high quality. The review considered 20 peer-reviewed articles and 6 out of 7 grey literature reports. Papers related to lifestyle issues such as use of drugs, alcohol and tobacco (3 papers) and exercise (2 papers), as well as screening (7 papers) and immunisation and vaccination (2 papers). The main findings in this area were: repeated, very similar recommendations about sensitivity and modes of presentation from different studies; evidence of impact of user perceptions and poor administrative effectiveness on uptake of screening or other preventive services; a need to assess what health promotion materials are actually available in various languages and media, and to monitor their impact; a need for research on the impact of lifestyle modification on health. Research also tends to conclude that there is a need to intervene around the training and capacity of staff to meet needs.

Implications for policy makers and practitioners: The implementation of minority health improvement programmes is frequently a national, rather than a local issue. The reformed Health Development Agency should ensure that questions of minority health are not omitted. In addition, the creation of a network for identification, update and exchange of local knowledge, and the continued maintenance of some central repository of materials and evidence of their effectiveness, should be a priority for future investment and planning in London.

4.2.4 Primary Care

The review identified a large amount (31 papers) of generally high quality literature in this topic area. Most (27) were in the peer-reviewed literature and 17 of these were reviewed. Four were grey literature reports and 3 were reviewed. The literature demonstrated a good basis of initial, exploratory and descriptive research which could guide future intervention-linked research. There appear to be no general barriers to the use of GPs (apart from for non-permanent populations), and indeed certain ethnic populations are high users. However, diagnosis, communication and referral/ treatment patterns remain important issues requiring further study. There were very few evaluations of interventions to improve access in primary care. A major evidence gap was in access to ‘other attached’ staff and services such as pharmacy and opticians, except for dental services. Information is also required on the knowledge, attitudes and behaviour of staff, including receptionists. There is a case for mounting robust studies of the behaviour of specific gatekeepers, or to test the impact of one of the many recommended developments to improve access.