Culture, Ethnicity and Chronic Conditions

A Global Synthesis

Charles Agyemang, Ama de-Graft Aikins, Charles Agyemang, Ama de-Graft Aikins

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781134913800
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

The global burden of chronic non-communicable diseases (NCDs), such as hypertension, diabetes and cancers, and of common mental disorders such as depression and anxiety, has a disproportionate impact on the low- and middle-income countries (LMICs) of Africa, Asia and Latin America. The pattern persists in African and Asian migrant populations in European and North American countries, despite the higher standards of living and improved health infrastructure. The consensus of experts is that pragmatic, cost-effective and sustainable interventions are required, and that these must prioritise the social determinants of NCDs as well as the social participation of affected communities. Despite the growing emphasis on the role of social processes in health system responses to chronic disease in LMICs, there has been no definitive volume that brings together LMIC perspectives on these issues.

This book aims to address this major gap by presenting new conceptual and empirical perspectives on the interconnections between culture, ethnicity and chronic conditions in LMICs and their implications for research, intervention and policy. The chapters focus on lay and institutional meanings, experiences and responses to chronic conditions in selected countries in Africa, Europe and the Caribbean.

This book was originally published as a special issue of Ethnicity and Health.

INTRODUCTION

Culture, ethnicity and chronic conditions: refraining concepts and methods for research, interventions and policy in low- and middle-income countries

Chronic physical and mental conditions constitute a significant proportion of the global burden of disease. Low- and middle-income countries (LMICs) of Africa, Asia, Latin America and the Caribbean are disproportionately affected. According to the World Health Organization (WHO) (2008), four major chronic non-communicable diseases (NCDs) — cardiovascular diseases (CVD), cancers, chronic respiratory diseases and diabetes — cause an estimated 60% of all global deaths, with an estimated 80% of these deaths occurring in LMICs. Similarly, an estimated 14% of the global disease burden is attributable to common mental disorders like depression and anxiety disorders; almost 75% of these disorders occur in LMICs (WHO 2010). In high-income countries of Europe and North America, the pattern of high chronic disease risk, disability and death persists among migrant populations from Africa, Asia and the Caribbean, despite higher standards of living and improved health infrastructure (Agyemang et al. 2009; Davies et al. 2011; Dressler et al. 2005).

The burden of chronic diseases in LMICs has been attributed to an interaction of factors including rapid urbanisation, ageing populations, globalisation, poor lifestyle practices and poverty (Beaglehole et al. 2011). While these factors are recognised, the development of solutions presents complex challenges because LMIC health systems struggle to address a cumulative burden of infectious and chronic diseases, and chronic disease research, intervention and policies are limited. For migrant populations in Europe and North America, the complexities arise from the diverse structures of immigration policies and the politics of minority ethnic inclusion in social, political and health systems (Agyemang et al. 2009; Dressler et al. 2005; Oppenheimer 2001; Phinney et al. 2001). The consensus of experts, endorsed by the UN High level meeting on NCDs in September 2011, is that given the health systems deficiencies in chronic disease care in LMICs, pragmatic, cost-effective and sustainable interventions are required and these must prioritise the social determinants of NCDs as well as the social participation of affected communities (Beaglehole et al. 2011; de-Graft Aikins et al. 2010a; United Nations 2011; Marmot 2005).

Despite the growing emphasis on the role of social processes in health systems responses to chronic disease in LMICs there has been no definitive volume that brings together LMIC perspectives on these issues. Influential international journals — for example, Lancet, WHO Bulletin, International Journal of Epidemiology, International Health, International Journal for Equity in Health, Plos Medicine, Globalization and Health, Tropical Medicine & International Health — have published review papers on NCDs in LMICs. These reviews have focused on the epidemiological and health systems aspects of the burden. Existing books that tackle the burden of NCDs with reference to LMICs have either focused on a structural aspect of the NCD burden, for example, economic (Suhrcke et al. 2006) and public policy (Adeyi, Smith, and Robles 2007), or on single conditions, for example, CVD (Labarthe 2010) and child obesity (Waters et al. 2010). No definitive text or volume exists that synthesises the complex multi-level dimensions of chronic physical and mental conditions in LMICs from the perspective of sociocultural processes and responses.

This Ethnicity and Health special issue, titled Culture, Ethnicity and Chronic Condition: a Global Synthesis, aims to address this key gap by presenting new conceptual and empirical perspectives on the interconnections between culture, ethnicity and chronic conditions in LMICs and their implications for research, intervention and policy. The articles focus on lay and institutional meanings, experiences and responses to chronic conditions in selected countries in Africa, Europe and the Caribbean. The idea for the issue developed from an international symposium, Prioritising Chronicity: an agenda for public health research on chronic disease for sub-Saharan Africa and Asia, held in Kuala Lumpur, Malaysia in 2010. Convened by Monash University, Malaysia and the British Academy funded UK-Africa Academic Partnership on Chronic Disease, the aim of the symposium was to examine the impact of chronic conditions on health systems in LMICs and to explore the potential for cross-fertilization of African and Asian research, intervention and policy. Some articles in this issue were either initially presented at the symposium or developed by symposium participants specifically for this call.

The chronic conditions and communities in focus

The chronic conditions in focus fall under two categories: (1) chronic physical conditions and their risk factors (Agyemang et al. forthcoming; Cooper et al. 2012; Samuels et al. 2012; Taylor et al. forthcoming; van de Vijver et al. 2013); and (2) chronic mental health and psychosocial conditions and their social determinants (Ronda et al. forthcoming; Vloeberghs et al. forthcoming). The research communities described in the empirical papers include Nigerians of mixed ethnicities (Yoruba, Ibo, other) living with hypertension in Lagos, Nigeria (Taylor et al. forthcoming), African migrants of mixed nationalities (Burundi, Democratic Republic of Congo, Republic of Congo, Rwanda, Somalia, Tanzania, Uganda) living in Glasgow making sense of chronic diseases and their risk factors (Cooper et al. 2012), migrant African women of mixed nationalities (Eritrea, Ethiopia, Sierra Leone, Somalia, Sudan) living in the Netherlands recounting their home country experiences of female genital mutilation or cutting (FGM/C; Vloeberghs et al. forthcoming), and migrants of various nationalities self-reporting their health disabling working conditions through the European Working Conditions Survey conducted in all 31 European countries (Ronda et al. forthcoming). The conceptual articles examine structural responses to NCDs in the Caribbean region (Samuels et al. 2012) and to CVD in LMICs (van de Vijver et al. 2013) and among African, African-Caribbean and Asian migrant communities in Europe and North America (Agyemang et al. forthcoming). All three articles place emphasis on the interacting, and mutually reinforcing, roles of national policies, health systems processes and research cultures in structural responses to NCDs in these diverse contexts.

The articles demonstrate the importance of culture, ethnicity and broader social conditions in multi-level responses to chronic conditions. They also point to the need for reframing these concepts in order to develop more robust research, interventions and policies in LMICs and for LMIC migrants living in high-income European countries. We focus on these emerging conceptual themes in the sections that follow.

Culture and chronic conditions: a multi-level, polyphasic and dynamic approach

Samuels et al. (2012) provide a useful set of definitions of culture which operates at different levels of social organisation. Citing Eckersley (2007, 194), Samuels et al. (2012) define culture as ‘the language and accumulated knowledge, beliefs, practices, assumptions and values that are passed between individuals, groups and generations’. This common definition of culture fixes attention to the culture of lay societies. Samuels et al. (2012) also define culture as a ‘complex and multifaceted’ concept that is variably distributed between generations and populations and is influenced by local, political and economic factors. This definition underscores culture in its ‘widest possible remit’ by taking on the macro-structure elements of society, including the culture of formal institutions, nations and geopolitical systems. This multi-level concept of culture is evident in a number of articles in this special issue.

At a fundamental level, the culture(s) of lay societies informs individual health and illness beliefs, knowledge, experiences and actions. Taylor et al. (forthcoming) report that explanatory models of hypertension among Nigerians with hypertension draw on traditional health beliefs of physical disorder, common sense observations of the relationship between life stressors and ill health, biomedical models of hypertension provided by health professionals and religious models of coping and spiritually mediated cures. Cooper et al. (2012) report that Eastern and Central African migrants in Glasgow make sense of chronic diseases through the lens of dominant representations of diseases in their home countries, individual and family health status, biomedical knowledge gained from doctors and their everyday perceptions of existing diseases in Glasgow. Migrant African women in the Netherlands who have experienced FGM/C make sense of their experiences through the lens of their cultural traditions, religion, family support systems, social and advocacy networks and the Dutch health system (Vloeberghs et al. forthcoming).

In the Nigerian and Scottish research settings the lay knowledge of chronic diseases presented is not completely aligned with ideal biomedical models; the misalignment has health implications. In the Nigerian setting misconceptions about the causes and prognosis for hypertension are likely to undermine appropriate self-management of hypertension. In the Glasgow setting low awareness of chronic disease risk, based on false dichotomies constructed between a higher risk of infectious diseases among Africans and higher risk of chronic diseases among Europeans, is likely to undermine the adoption of healthy lifestyles by African migrants. In the Netherlands, a combination of the psychosocial and stigmatising impact of FGM/C and barriers to culturally appropriate care in the Dutch health system place some women in positions of isolation and silent suffering. In all three studies, these problems do not rise solely from the use of traditional cultural knowledge and beliefs. Study participants draw, consciously and eclectically, from different systems of knowledge, including their indigenous traditions, to make sense of the chronic conditions under study. This cognitive process is theoretically significant.

‘Cognitive polyphasia’ is a social psychological concept of social knowledge production that suggests that in everyday life, across a variety of cultures, individuals and communities draw on diverse, and even opposing, models of knowledge (Moscovici 2008; Provencher 2011). Syntheses of qualitative research on everyday responses to diabetes and hypertension experiences suggest that cognitive polyphasia may be a universal response to the complex — biological, psychological, sociocultural and material — impact of living with a long-term chronic condition (Campbell et al. 2003; Marshall, Wolfe, and McKevitt 2012). Depending on the context and personal goals, this process of knowledge production may be psychologically difficult or easy for the individual. Taylor et al. (forthcoming), for example, interpret the psychological impact of contradictory hypertension knowledge among their Nigerian participants in terms of ‘cognitive dissonance’ (Festinger 1957), the psychological tension, or discomfort that arises from holding inconsistent beliefs or expressing inconsistent behaviours. Psychological ease or comfort with inconsistent thinking and behaviour — the opposite of cognitive dissonance — is also possible and more common than reported and theorised (Markova 2003; de-Graft Aikins 2012). A systematic review of qualitative research on lay perspectives on hypertension and drug adherence in 16 countries across six regions (Africa, Asia, Australia, Europe, North America and South America) conducted by Marshall, Wolfe, and McKevitt (2012) suggested remarkable similarities in lay knowledge of the causes and consequences of hypertension. The sources of knowledge were eclectic and ‘individual participants often held mutually contradictory explanations, and the inconsistencies did not trouble them’. There is a tendency within global public health to view health and illness beliefs in the western context (usually denoting high-income countries of Europe and North America) as rational and health and illness beliefs in non-western cultures (most LMICs) as faulty and irrational, particularly among the uneducated rural poor. This perception influences the development ofeducation and related interventions. The review of community-based interventions for the prevention of CVDs in LMICs, conducted by Van der Vijver et al. (2013) underscores the limitations of adopting such dichotomies. The review suggests that public health education provided via the mass media, in workplaces, schools and in communities is more successful in changing some health behaviours when combined with improving primary healthcare, including access to affordable medicines. However, positive behaviour change appears to be influenced by personal proximity to or experience of CVD and may fluctuate over time, especially in the absence of follow-up care and intervention monitoring. This evidence is similar to evidence gathered in high-income countries on the limitations of KAB (knowledge-attitude-behaviour) approaches to health behaviour change and of cross-sectional interventions for chronic illness management (Crossley 2000; Campbell et al. 2003; Joffe 2002). KAB critics argue, and have demonstrated, that the relationship between knowledge, attitudes and behaviour is not linear or predictable, because this relationship is mediated by the complex dynamics of social life, relationships, resources and goals. Similarly, the healthcare and self-care strategies of the chronically ill are not linear or predictable because the experience of chronic disease is lifelong and unfolds within the complex dynamics of biological, psychological, social and material changes. These emerging perspectives on the complex use of knowledge for rational purposes across cultural contexts suggest there is a need for a change in conceptual approaches to public health education and healthcare. First, interventions should recognise, legitimise and incorporate lay perspectives or explanatory models (Taylor et al. forthcoming; Cooper et al. 2012). Second, the success of interventions will depend on the extent to which the psychological functions — positive, negative, benign — of eclectic knowledge production are understood. Finally, longitudinal approaches are required to understand and address the impact of time and chronicity on healthcare and self-care strategies. Methods that capture depth and complexity of knowledge, experiences and social practices, such as the qualitative approaches described in this issue, will be most appropriate to these research issues.

The role of culture at the level of macro-structures is evident in the structural context and structural responses to the rising prevalence of NCDs in the Caribbean (Samuels et al. 2012). It is also salient in the diversity of working conditions of migrant populations across Europe (Ronda et al. forthcoming) and the ideological framework of research on ethnic minority health in Europe and North America (Agyemang et al. forthcoming). Samuels et al. (2012) present a nuanced account of the way the social determinants of NCD risk and morbidity in the Caribbean are shaped by current poverty and social inequalities in countries like Haiti, as well as by a shared history of slavery and the effects of slavery on family systems, gender relations and gendered and class-based health practices across much of the region. They demonstrate the way these historical and economic forces have also shaped the culture of governance and policy-making particularly in the areas of socia...