Book reviews

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Sociology of Health & IllnessVolume 26, Issue 4 p. 489-500 Free Access Book reviews First published: 21 July 2004 https://doi.org/10.1111/j.0141-9889.2004.00402.xAboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Smedley, B.D., Stith, A.Y. and Nelson, A.R. ( 2003 ) Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. Washington DC: Institute of Medicine of the National Academies. Joseph Rowntree Foundation Social Care: Race and Ethnicity Series A. Rai-Atkins and A. Ali Jama, Norman Wright, Velma Scott, Chris Perring, Gary Craig, and Savita Katbamna ( 2002 ) Best Practice in Mental Health: Advocacy for African, Caribbean and South Asian communities . Bristol : The Policy Press , ISBN 1 86134 394 9 T. Bignall, J. Butt and D. Pagarani ( 2002 ) Something to Do: the Development of Peer Support Groups for Young Black and Minority Ethnic Disabled People . Bristol : The Policy Press , ISBN 1 86134 319 1 Y. Hussain, K. Atkin and W. Ahmad ( 2002 ) South Asian Disabled Young People and their Families . Bristol : The Policy Press , ISBN 1 86134 326 4 A. Vernon ( 2002 ) User-defined Outcomes of Community Care for Asian Disabled People. Bristol : The Policy Press , ISBN 1 86134 446 5 These books could be read as a tale of two cultures – or a tale of two disciplines. Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare is a major scientific review of the state of play that was requested by the US Congress and produced by the American Institute of Medicine, using a very traditional medical model/public health framework. On the other hand, the social Care: Race and Ethnicity Series, funded by the Joseph Rowntree Foundation in Britain, comprises four small local studies strongly influenced by the discipline of disability studies. The Unequal Treatment study was designed to assess the extent and sources of racial and ethic differences in healthcare and to provide recommendations for interventions which would eliminate such disparities. It is the most comprehensive study of this topic I have ever seen. The 15-member committee comprised experts from clinical medicine, economics, healthcare services research, psychology, health policy and other relevant fields. It examined a very wide range of scientific literature, commissioned seven papers on specific aspects (such as legal aspects of healthcare discrimination), hosted four public workshops, arranged four specialist technical liaison panels, conducted six focus groups of consumer members from various racial and ethnic backgrounds, and held telephone consultations with African-American and Hispanic healthcare providers. The study focused solely on racial and ethnic discrimination: enormous efforts were made to separate cultural bias from other factors such as access to care, ability to pay or insurance coverage. The findings of this report are not particularly surprising, but they are an indictment of the healthcare system. Unequal Treatment states unambiguously: members of racial and ethnic minorities receive lower quality of healthcare than non-minorities. Stereotypes, prejudices and biases were recognised as particularly important in clinical encounters, but members of minority communities also faced other barriers relating to language, geography and cultural familiarity. The report concludes that throughout the entire health system, there is systematic bias. African-Americans, and in some case Hispanics, are less likely to receive appropriate cardiac medicine, to undergo coronary artery bypass surgery, to receive peritoneal dialysis and kidney transplantation, or even to receive the most routine medical procedures. The end result of receiving lower-quality basic clinical services, such as intensive care, is a higher rate of mortality among patients from these communities. The area where there is strongest evidence for healthcare disparities is cardiovascular care. Evidence from scientific tests such as coronary angiography, a key diagnostic procedure, clearly suggests that differences in treatment are not attributable to severity of coronary disease, or overuse of services by whites. Further, the racial disparities in coronary, revascularisation procedures are connected to higher mortality rates among African-Americans. A similar pattern of discrimination is found in other areas. Concerning cancer care, Unequal Treatment notes that significant racial differences occur with regard to diagnostic tests, treatments and analgesics. Again, these treatment disparities are associated with increased mortality rates. Similarly, with regard to HIV treatment, African-Americans receive less antiretroviral therapy, prophylaxis for pneumocystic pneumonia, and protease inhibitors. These differences are found regardless of age, gender, education, CD4 cell count and insurance coverage. The characteristic outcome of such racial disparities is a higher mortality rate among minorities. In certain areas, members of minority groups are more likely to receive certain procedures. However, these are described by the report as ‘generally less desirable procedures’. For instance, African-Americans are 3.6 times more likely to receive amputations than whites, and are 2.4 times more likely to receive bilateral orchietomy (the removal of both testicles due to cancer or the fear of cancer). There are some healthcare disparities which result from what the report calls ‘patient-level attributes’. For instance, members of minority communities are more likely to decline recommended services, comply poorly with treatment regimes, and delay seeking treatment. The report concludes, however, that while these differences may exist, they are unlikely to be a major source of healthcare disparities. More significant problems can be found at the systems level – such as the ways in which healthcare systems are organised and financed. Members of racial and ethnic minorities are also more likely to be enrolled in lower-end healthcare plans that are characterised by higher per capita resource constraints and stricter limits on covered services. Language barriers are also important – the literature suggests that as many as one in five Latinos may avoid seeking medical care because of language barriers. Such problems may be compounded by time pressures on physicians, which can hamper their ability accurately to assess minority patients. Physician bias and stereotypes about minority patients can exacerbate these problems. Unequal Treatment contains a range of recommendations designed to eliminate racial and ethnic disparities in healthcare, including legal, regulatory and policy changes, health systems interventions, patient education and empowerment, and increased cross-cultural education in the health professions. It is a must-read book for anyone interested in researching health and ethnicity – I have never seen such a comprehensive literature review on this topic, nor such broad recommendations for redressing many of the discriminatory barriers which exist in the healthcare system. There is, however, one reservation I feel compelled to make about Unequal Treatment. The study was limited – by Congress – to study only those ‘racial and ethnic differences in healthcare that are not otherwise attributable to known factors such as access to care (e.g. ability to pay or insurance coverage)’. This means that options for recommending broader social change (particularly economic changes around ability to pay and insurance coverage) were limited at the outset. This limitation, I would suggest, reflects both a political dynamic that influenced the commissioning of this particular study, but also reflects broader parameters within which public-health reforms typically operate. Such reforms are typically targeted at specific communities or outcomes – wholesale social and economic reform is rarely on the agenda. To gain a more critical examination of such broader social and economic issues, and their relationship to health, one might instead turn to the field of disability studies. It should not be surprising then that the books in the Joseph Rowntree Foundation Social Care: Race and Ethnicity Series generally adopt a more critical (and often polemic) stance towards racial discrimination and healthcare. This is exemplified in Best Practice in Mental Health, which identifies the situation as one of ‘systematic oppression’ that results in ‘degrading and involuntary mistreatment of mental health service users’ (p. 1). This report reflected the findings from a study undertaken by Shaan, a collective of black and ethnic minority people in Yorkshire and East Midlands. Best Practice in Mental Health outlines five recommendations which are said to ‘facilitate a radical shift from provider-led to black user-led and carer-led initiatives seeking to promote inclusion and active participation in mental health advocacy’ (pp. 41–42). These recommendations involve minimum standards in: funding; black and minority ethnic service users’ and carers’ involvement; language and communication; culturally appropriate services; and culturally appropriate advocacy services. Just as important as these findings, however, was the empowering approach used to develop the recommendations. Best Practice in Mental Health, as well as the other books in the Social Care: Race and Ethnicity Series, uses a completely different lexicon from that adopted by the authors of the Unequal Treatment report. It refuses to position members of ethnic minorities as simply ‘patients’. It is not directed by medical professionals who discursively distance themselves from the population they study. Instead, its central concept is ‘empowerment’. Best Practice asks mental health consumers what reforms they would require to feel empowered, and records their answers. Such answers (including a culturally specific advocate you can talk to in your own language) brilliantly capture some of the systemic changes which are urgently needed for effective service delivery to members of these communities. Interestingly, this report adopts a different terminology from Unequal Treatment with regard to race and ethnicity. Whereas the American study looked at governmental definitions of ethnicity and broke its data down into specific populations (such as African-Americans, Hispanics, Asian Americans, American–Indians, and so on), this British study adopted a much broader and more sweeping definition: ‘Black refers to people living in Britain who experience disadvantage and unequal treatment from various institutions and societal structures because of their skin colour, language, religion, gender and/or cultural beliefs. We use the term ethnic minority alongside ‘black’ to encompass the similar experiences of newer settled communities’ (p. vi). Such differences in definitions of race and ethnicity underscore the fact that constructing ‘race’ and ethnicity is a thoroughly political, contextual and social process. The broader definition of ‘Black’ populations used in Best Practice in Mental Health may serve the political purpose of uniting diverse communities who feel aggrieved about their treatment in the healthcare system. However, as these communities would acknowledge, they are not homogeneous. This political alliance may be fruitful and strategic now, but the term ‘Black’ used in this way will eventually have to be deconstructed to target more specific interventions. This definition of Black is not unique to Best Practice in Mental Health. In Something to Do: the Development of Peer Support Groups for Young Black and Minority Ethnic Disabled People, a similar definition is used. Using lower case, it refers to ‘black’ as ‘people who suffer racism because of their skin colour’. This is a definition which clearly resonates in Britain far more than it does in some other contexts. The unique position of Latinos with regard to such a label would make it difficult to apply such a definition in America. Something to Do basically provides a ‘how to’ manual for establishing a black peer support group for disabled people. Its recommendations are based on the experiences of five support groups, namely: African Caribbean Leisure Group, Association of Bradford Deaf Asians Women's Group; Asian Deaf Young Women's Group, Coventry; Black People First Group; and Tower Hamlets Self-Advocacy Group. They provide suggestions for groups in terms of establishing rules for making decisions, generating changes, maintaining confidentiality, finding a place to meet, working with supporters and dealing with finance. Something to Do also discusses the reasons why people join such a group, including: meeting other people, something to do, talking to other young black disabled people and feeling comfortable. The peer support groups help members learn about ethnicity, understand what it is like to be a black deaf or disabled person, and they offer personal rewards such as increased confidence, reduced loneliness and emotional support. South Asian Disabled Young People and their Families by Hussain, Atkin and Ahmad adopts a more cautious and scholarly tone than the two preceding books in this series. This book is based on a small qualitative study of 29 young disabled people (16 males, 13 females) and 14 parents (eight of whom identified themselves as Muslim, and six as Sikh). It notes the young people's views on various topics, including the relationships between disability and other experiences such as: religion, culture and ethnicity; marriage and family; educational and health services; and disabling barriers and racism at work and at home. Finally, a number of policy and practice recommendations are identified. One of the most interesting findings of this study was its questioning of the relevance of the social model of disability by people from South Asian backgrounds on the grounds that it reflected a Eurocentric view of independence and autonomy which was not culturally appropriate. One of the merits of disability studies as an intellectual discipline is its ability to highlight disabling barriers without pathologising the individuals who experience them. User-defined Outcomes of Community Care for Asian Disabled People by Ayesha Vernon performs this role very well. It reflects a small study of 28 disabled Asian people between the ages of 18 and 40, with a range of impairments. The participants expressed a desire to be able to move freely at home, to have independence and choice, to have equal access to public places and printed materials and to be socially included in their communities in a range of ways. However, they were prevented from achieving these goals by barriers to services, to society, and sometimes to their own families and communities. The sorts of reforms this report recommends include: consultation with Asian disabled people; services that meet Asian disabled people's priority outcomes; flexibility, choice and control (both within the lives of individuals and in the services they receive); services which are competent, culturally sensitive, timely, easy to access and transparent in their decision-making processes; and the provision of suitable aids, adaptations and equipment. All of these are perfectly reasonable and eminently sensible. My only criticism of Vernon's report would be that she buys into the concept of ‘quality of life’– itself a very controversial topic – in order to justify these reforms. That is, Vernon argues that these reforms will improve the ‘quality of life’ of Asian disabled people. This appropriation of a concept which has been criticised for being particularly fuzzy and difficult to operationalise was not necessary, in my view. Racism and health, the subject matter of both the Social Care: Race and Ethnicity Series and the Unequal Treatment report, is incredibly important. These books offer different approaches, influenced by their geographical location in Britain or the US, as well as their different disciplinary backgrounds (principally, public health and disability studies). It may seem unfair to compare the Unequal Treatment report – which was commissioned by Congress and provided with huge amounts of funding – with a series that was produced with a fraction of the budget. Yet such a comparison can highlight both the strengths and weaknesses of each approach. The public health approach rarely identifies the need for broad social change, and typically narrows its focus to small, targeted interventions. Disability studies, on the other hand, have far less institutional and financial support, produce reports which are less influential and are often polemical, advocate systemic changes, and use an empowering approach at the grass-roots level. Mark Sherry Department of Disability and Human Development, University of Illinois at Chicago, MC626, 1640 West Roosevelt Road, Chicago, IL 60608, USA e-mail: markdsherry@yahoo.com Culley, L. and Dyson, S. Ethnicity and Nursing Practice. Basingstoke : Palgrave , 2001 £15.95 (pbk) xv + 291pp . ISBN 0-333-75331-3 . This book is different from the more traditional texts on ethnicity and nursing and is a very stimulating and refreshing text. Some nurse authors tend to discuss this issue in terms of ‘transcultural nursing’, denoting ethnicity as a fixed stable set of cultural traits or attributes which people possess, and define them. This is not only misleading, but also tends to reinforce the stereotypical view that those from other cultures are ‘outsiders’. The broad aim of the book is to provide an outline of sociological concepts relating to race and ethnicity by demonstrating their relevance to nursing practice. It consists of 11 chapters with contributions from 18 authors and is divided into three parts based mainly on empirical evidence drawn from a wide research base. Part One deals with ethnicity and health and addresses specific theoretical and practical issues relating to the health status of ethnic groups such as ethnic inequalities in mental health, and has an interesting chapter on ethnic monitoring and nursing. Part Two focuses on ethnicity and nursing practice, and includes an extremely well argued chapter by Culley on nursing, culture and competence, discussing the role of culture in relation to the health disadvantages experienced by some ethnic communities. I was impressed with the way in which the chapters argued for a broader definition of culture, calling for a shift away from the rigid and static terms often used to denote British or ‘alien culture’. Emphasis is placed on the enormous diversity between groups referred to as ethnic minorities. Part Two also examines a range of important issues for nursing such as communication, interpretation and translation, ethnicity and palliative care, and working with families from ethnic minorities. Chapter 7 examines the role of midwives screening for blood disorders such as Sickle Cell Disease and Thalassaemia, and critically considers social encounters whereby healthcare workers socially construct their own ethnic categorisation. I found the chapter on ethnicity and palliative care particularly useful in helping to establish the view that despite implementation of a range of multicultural initiatives, many service users still experience forms of exclusion, both from and within services. Part Three focuses on the experiences of nurses from minority ethnic groups. In particular it contains a very welcome chapter reviewing the major contributions made to sociological analyses of the professions. There is a particularly interesting review and critique of professionalism in nursing, linking this debate with the career trajectories of Caribbean nurses. The authors also highlight the extent to which racism plays an active part in the lives of NHS workers which I felt was an important and timely issue to raise. As a whole, the book is critical of ‘the essentialist concept of culture’ which treats ethnicity as a fixed set of cultural attributes that can be described and prescribed to various social groups. The argument is made for not seeing ethnic communities as a homogenous group. Various authors use evidence to broaden our understanding of the wider role of ethnicity, discussing key issues such as stereotyping and victimisation. Culley argues that many of the disadvantages people experience as a result of being labelled ‘ethnic minority’ stem from the failure of health professionals to acknowledge and celebrate the richness of cultural diversity. I was pleased that this was the central theme of the book, which began with a chapter providing an excellent discussion of scientific racism that combines racial theory and ethnicity. There is a real need for nurses to engage in this type of debate, which is long overdue. Chapter 2 identifies the many problems of definition and social identity as well as some of the methodological problems in measuring health status. The chapter critically reviews how patterns of ethnicity arise and makes the link between racism and its effect on health. A more detailed discussion on how nurses tackle issues such as racism and victimisation in the workplace would have been particularly useful. There was also scope for further discussion of the structural barriers that prevent nurses from becoming more culturally sensitive. With the current political emphasis being placed on management of asylum seekers in the UK, it was refreshing to read a book arguing that ethnic identity is concerned with the way in which people define themselves and their relations with others. I was particularly impressed by the way many chapters demonstrated that ethnicity and identity were products of social forces including social exclusion, stigma and the political resistance made to them. The book challenges nurses to consider culture as generating and sustaining a variety of behaviours and attitudes. It would have been useful to have expanded on, and clarified how, many of the interesting ideas and topics raised could be communicated through education and training in order to improve current attitudes. This is a readable and comprehensive text, which deals with the topics using a rigorous academic style. There is much that will appeal to a wide range of healthcare practitioners in reviewing and challenging current ethnocentric practices in nursing. John Costello University of Manchester School of Nursing, Midwifery and Health Visiting Cockerham, W.C. (ed) The Blackwell Companion to Medical Sociology. Oxford : Blackwell Publishers , 2001 £80.00 (hbk) viii + 518 pp . ISBN 0631217037 This book provides a wide-ranging introduction to some of the theoretical and practical applications of medical sociology. It is an edited volume with contributors from all of the continents being represented. It is divided into two distinct sections: first, substantive topics, which in nine chapters introduces some of the main areas of research within medical sociology. The second part is concerned with regional perspectives. The chapters are grouped according to their continental locations and examine issues which are of particular concern to these. As a relative newcomer to many of the concepts involved in medical sociology, I found the first chapter of this book especially welcome. In this, William Cockerham, also the editor, provides a broad overview of medical sociology. Cockerham begins with a brief history of the sub-discipline, starting with its development after world War Two as a practically-oriented area of study, funded mainly by governments. Building on this he discusses the growth of some of the main theoretical ideas, including Talcott Parsons and structural functionalism, symbolic interactionism and conflict theory. The debate is then shifted to the more contemporary work of Pierre Bourdieu and the emergence of new areas of study. The remaining chapters in the section dealing with substantive topics introduce in more depth many of the concepts raised by Cockerham. These include contributions on culture and health, the sociology of the body, social stratification, gender, work and migration. Each of these chapters provides an introduction to the topic, how it was developed, the use of theory and its practical usage. Stella Quah's chapter on the influence of culture on health behaviour is representative. In this she outlines the relevance of the classic works of Durkheim, Weber and Parsons to the development of a concept of culture. By providing illustrative examples of the way in which culture affects health this allows those unfamiliar with these ideas readily to understand them. Sarah Nettleton's chapter on the sociology of the body also employs recognisable examples to introduce an area of sociology which may be new to many. In this she outlines some of the main theoretical standpoints, including issues regarding the regulation of the body. Central to this is a discussion of the way in which changes in late modern society, such as the shift in regulation from the church to medicine, and developments within medicine, can change the way in which we define the body. In Part Two the global nature of medical sociology is explored with sections on the Americas, Western Europe, Russia and Eastern Europe, Africa, the Middle East and Asia, and the Pacific Region. Many of the concepts which were introduced in the section on substantive topics are developed within the context of these regional settings. Areas which are covered include: the American and Canadian healthcare system, social science and health in Brazil, medical sociology in Britain, Mexico and Germany, health in Poland within the context of communism, as well as contributions on healthcare in Sweden, the Czech Republic, South Africa, the Arab world, Israel, Australia, Japan and China. By covering such a wide geographical area this book illustrates the many practical applications of medical sociology. A good example of this is Kristina Orfali's chapter on the French paradox, in which she attempts to explain why a country which apparently has many high-risk activities (such as alcohol consumption and smoking) maintains a relatively high life expectancy. Another chapter which I found particularly interesting was Elena Dmitrieva's contribution on healthcare systems. In this she looks for sociological answers to the crisis in Russian mortality which has seen life expectancy drop from 65.1 years in 1987 to 60.7 in 1997. In addition she considers the role and history of medical sociology in Russia, through its stagnation in the time of Stalin and the constraints of Marxist – Leninist theory. This volume declares itself to be aimed at ‘those studying sociology at the advanced undergraduate level or graduate level, as well as scholars in the social sciences’. My overall impression is that it has achieved this aim. I found it to provide an easily accessible route into many of the theoretical aspects of medical sociology. The development of concepts which were introduced in the early chapters through the remainder of the book allowed the reader to view the way in which many concepts, which may at first appear complex, can be applied in a practical manner. Catriona MacDonald Research Unit in Health Behaviour and Change University of Edinburgh Hockley, J. and Clark, D. (eds) Palliative Care for Older People in Care Homes. Buckingham , Open University Press . 2002 £19.99 (pbk) ISBN 0335210600 This is an important book, which develops the case for an integrated approach to palliative care for older people in care homes. The book offers an overview of the historical development of care homes and hospice/palliative care and the policy context of such developments. It is argued that those entering care homes are increasingly the very elderly, particularly women, suffering from life-limiting conditions that could benefit from the palliative care approach. The book explores the limits of care at the end of life within care homes. These limits are attributed to the current orientation within care of older people towards ‘normalisation’ and ‘rehabilitation’, with the expectation that the resident will remain independent and will sometimes improve quality of life. It is argued that the emphasis on ‘normalisation’ and ‘rehabilitation’ informs the assessment process and this may result in a failure to recognise or acknowledge palliative care needs. In contrast to the emphasis on ‘normalisation’ and ‘rehabilitation’, the culture of spe