Health Psychology in the Context of Biology, Society and Methodology
’To love life is to risk it,
to live it fully
means being ready always
to lose it
giving it over entirely to solidarity.’
Miguel D’Escoto Brockmann (1933—2017)
There is substantial evidence linking poor social conditions with ill health. The explanations for this include material, behavioural and psychosocial factors. In this chapter we consider health inequalities in the context of social justice, the competing explanations and the role of health psychologists in creating a healthier society. The explanation of health inequalities creates many important challenges for theory and research in health psychology.
Social Inequalities and Health
As shown in Chapter 4, substantial evidence from dozens of countries has linked social inequalities with health. Consistently, these studies show that people of lower socio-economic status (SES) have more illness and lower longevity than those in higher socio-economic groups. There is a gradient such that those one step down the ladder are unhealthier than those above. This persistent gradient is often referred to as a ’health gradient’. When mortality is the measure, a more apposite term would be ’mortality’ or ’death gradient’. ’Death gradients’ have been observed in all human societies in both rich/developed countries and poor/developing countries (Marks, 2004). Such gradients are normally continuous throughout the range of economic variation. If the gradient were stepped or flat at one end of the range and steep at the other, it could be inferred that the causative mechanism(s) had a threshold value before any of the ’ill-effects’ could appear. However, there is no evidence of such thresholds; the gradient is a continuous one.
One of the earliest reports on the health gradient was by the French physician Louis-René Villermé (1782—1863) who, in the 1820s, examined the health of residents in different neighbourhoods of Paris. From a careful review of the data, Villermé concluded that there was a relationship between the wealth of the neighbourhood and the health of its residents. Those living in the poorer neighbourhoods had a higher death rate, and military conscripts from those neighbourhoods were smaller and had more illnesses and disabilities (Krieger and Davey Smith, 2004). Shortly afterwards, Friedrich Engels published his classic work on The Condition of the Working Class in England in 1844 (Engels, 1845). This book provided a detailed description of the appalling conditions and the limited health care of working-class residents of Manchester (Figure 5.1). He wrote:
All of these adverse factors combine to undermine the health of the workers. Very few strong, well-built, healthy people are to be found among them. Their weakened bodies are in no condition to withstand illness and whenever infection is abroad they fall victims to it. This is proved by the available statistics of death rates. (Engels, 1845/1958: 118—19)
When Engels compared death rates within the city he found that they were much higher in the poorer districts. Further, he realized the importance of early development and noted: ’common observation shows how the sufferings of childhood are indelibly stamped on the adults’ (1845/1958: 115). Although these early researchers realized the importance of the impact of adverse social conditions, interest in the social aspects of health was marginalized with the rise of germ theory and the growth of Social Darwinism and eugenics (e.g. Krieger and Davey-Smith, 2004). The former theory focused on controlling specific pathogens rather than social reform, whereas the second argued that innate inferiority, not social injustice, was the cause of ill health (see also Chapter 3). However, the growth of social movements in the 1960s rekindled interest in social justice.
The foundation of the National Health Service (NHS) in the UK in 1947 was an attempt to remove inequalities that existed in health care provision. Health services were provided for all free at the point of delivery. Titmuss (1968: 196) observed, after 15 years’ experience of the NHS, that the higher income groups:
know how to make better use of the service; they tend to receive more specialist attention; occupy more of the beds in better equipped and staffed hospitals; receive more elective surgery, have better maternal care, and are more likely to get psychiatric help and psychotherapy than low-income groups — particularly the unskilled.
These continued disparities led Tudor Hart (1971) to describe the ’inverse care law’: the availability of good medical care tends to vary inversely with the need for the population served.
Figure 5.1 Engraving of Manchester in the 1870s
In 1977 the UK government established a working group to further investigate social inequalities in health. The subsequent Black Report (Townsend and Davidson, 1982), named after Sir Douglas Black, the working group’s chair, summarized the evidence on the relationship between occupation and health. It showed that those classified as unskilled manual workers (Social class V) consistently had poorer health status compared with those classified as professionals (Social class I). Further, the report graphically portrayed an inverse relationship between mortality and occupational rank for both sexes and at all ages. A class ’gradient’ was also observed for most causes of death, particularly respiratory, infective and parasitic diseases. Inequalities in terms of utilization of health care, especially among preventive services, were also apparent. It concluded:
Present social inequalities in health in a country with substantial resources like Britain are unacceptable and deserve to be so declared by every section of public opinion … we have no doubt that greater equality of health must remain one of our foremost national objectives and that in the last two decades of the twentieth century a new attack upon the forces of inequality has regrettably become necessary. (Townsend and Davidson, 1982: 79)
In a follow-up study, similar trends persisted in the 1980s as social inequalities in health continued to widen (Townsend et al., 1992). As discussed in Chapter 4, the Whitehall studies provided supporting evidence on the relationship between SES and health. As Marmot and Allen (2014: S517) explained:
To reduce health inequalities requires action to reduce socioeconomic and other inequalities. There are other factors that influence health, but these are outweighed by the overwhelming impact of social and economic factors—the material, social, political, and cultural conditions that shape our lives and our behaviours […] In fact, so close is the link between social conditions and health, that the magnitude of health inequalities is an indicator of the impact of social and economic inequalities on people’s lives. Health then becomes an important further cause for concern about the rapid increase in inequalities of wealth and income in our societies. Increasingly, we are using the language of health inequity to describe those health inequalities that, though avoidable, are not avoided and hence are unfair.
Tackling health inequalities is not about eliminating the hierarchy; rather, it is more about understanding the pathways of inequalities and how these can be addressed. Marmot and Allen (2014: S517) continued:
Two particular issues stand in the way before we can act on knowledge of social determinants of health to address health equities: lifestyle drift and overconcentration on health care. Lifestyle drift describes the tendency in public health to focus on individual behaviors, such as smoking, diet, alcohol, and drugs, that are undoubted causes of health inequities, but to ignore the drivers of these behaviors—the causes of the causes. Too often health is equated only with health care. Lack of access to health care has dominated the debate in the United States because of egregious inequities in access, despite spending far more on health care than any other country.
In understanding and dealing with health inequalities, it is important to recognize all determinants of health — from micro to macro levels — and to consider how many of these are within the control of individuals in society. The idea of capabilities is related to the actual freedom and rights enjoyed by people (Sen, 1999). In this respect, freedom does not only entail one’s freedom to choose; rather, it also involves freedom from the barriers that restrain people from reaching their fullest human potential. Only when individuals have the ’capability’ to exert control over the factors that influence their health can they truly exercise their ’right to health’. The vast levels of social inequalities pose serious questions regarding the capacity of individuals to exercise their human rights. The emergence of new centres of power extends the issue to the international scale where the capacity of nation states to protect and promote their citizens’ right to health is also being threatened.
The Acheson Report (1998) outlined recommendations to address health and social inequalities in the UK. In 2008, the WHO Global Commission on the Social Determinants of Health published a report to address health equity by taking action into the social determinants health. In the same year, the Scottish government (2008) published the Equally Well report, which provided substantial evidence on the relationship between health and socio-economic deprivation in Scotland. The UK government commissioned Sir Michael Marmot to review current trends and to propose the most effective evidence-based strategies to reduce health inequalities in England. In 2010, Marmot’s report entitled Fair Society, Healthy Lives recognized the reduction of health inequalities as a matter of fairness and social justice (Marmot, 2010). The report underlined that solely focusing action on the most disadvantaged will be inadequate. Fair distribution of health, well-being and sustainability are more important measures of success than economic growth. As expressed in the final report of the Commission on Social Determinants of Health, inequities in power, money and resources were to blame for much of the inequities in health within and between countries. To address inequities in health effectively, cross-government commitment to action is needed across all of the social determinants of health (for more details see http://www.instituteofhealthequity.org).
Explanations for Social Inequalities in Health
Health inequalities can be considered from an ecological approach or systems theory approach. Bronfenbrenner’s (1979) ecological approach conceptualized developmental influences in terms of four nested systems:
· microsystems: families, schools, neighbourhoods;
· mesosystems: peer groups;
· exosystems: parental support systems, parental workplaces;
· macrosystems: political philosophy, social policy.
These systems form a nested set, like a set of Russian dolls: microsystems within mesosystems, mesosystems within exosystems and exosystems within macrosystems.
Ecological theory assumes that human development can only be understood in reference to the structural ecosystems. The ’Health Onion’, a general systems framework for understanding the determinants of health and illness, was presented in Chapter 1 (Figure 1.5). Of key importance is the perceived environment, not the so-called ’objective’ environment. In Box 5.1 we list some of the characteristics of low SES using Bronfenbrenner’s (1979) systems approach. The box shows the many different disadvantages across all four systems of the social, physical and economic environment. In addition, we can add the high levels of perceived injustice that many people with low SES may feel.
Any explanation of the SES—health gradient needs to consider psychosocial systems that structure inequalities across a broad range of life opportunities and outcomes — health, social and educational. As illustrated in Box 5.1, in comparison to someone at the high end of the SES scale, the profile of a low SES person is one of multiple disadvantage. The disadvantages of low SES accumulate across all four ecosystems. It is this kind of accumulation and clustering of adverse physical, material, social and psychological effects that could explain the health gradient. While each factor alone can be expected to produce a relatively modest impact on mortality, the combination and interaction of many kinds of ecosystem disadvantage are likely to be sufficiently large to generate the observed gradient. The socio-economic conditions that contribute to the health gradient can also be experienced by individuals across the life course (Pavalko and Caputo, 2013).
While the Black Report (Townsend and Davidson, 1982) clearly documented the link between social position and health, it also detailed four possible explanations for health inequalities:
An artefact: the relationships between social position are an artefact of the method of measurement.
Natural and social selection: the social gradient in health is due to those who are already unhealthy falling downwards while those who are healthy rising upwards.
Box 5.1 Behaviours and Experiences Associated with Low SES
Microsystems: families, schools, neighbourhoods
· Low birthweight
· Family instability
· Poor diet/nutrition
· Parental smoking and drinking
· Poor schools and educational outcomes
· Poor neighbourhoods
Mesosystems: peer groups
· Bullying, gangs and violence
· Unprotected sex
Exosystems: parental support systems, parental workplaces
· Low personal control
· Less social support
· Unemployment or unstable employment
· High stress levels
· Low self-esteem
· Poorer physical and mental health
Macrosystems: political philosophy, social policy
· Poor housing
· Environmental pollution
· Unemployment or unstable employment
· Occupational hazards
· Poorer access to health services
· Inadequate social services
Materialist and structuralist explanations: emphasize the role of economic and socio-structural factors.
Cultural and/or behavioural differences: ’often focus on the individual as the unit of analysis emphasizing unthinking, reckless or irresponsible behaviour or incautious lifestyle as the moving determinant’ (Townsend and Davidson, 1982: 23).
While accepting that each explanation may contribute something, the report emphasized the importance of the materialist explanations and developed a range of policy options that could address the inequalities. Contemporary research into explanations for social inequalities in health has been reviewed by Macinko et al. (2003). Their classification extends the four-fold explanation developed in the Black Report.
Psychosocial explanations are considered at the individual (micro) and social (macro) levels. At the micro level, it is argued that ’cognitive processes of comparison’, in particular perceived relative deprivation, contribute to heightened levels of stress and subsequent ill health. Additionally, the Whitehall studies suggested that it was the lack of perceived control over working conditions that increases stress at the lower end of the social scale. At the macro level, psychosocial explanations focus on the impairment of social bonds and limited civic participation, so-called social capital (see below), that flows from income inequality.
The neo-material explanations have drawn increased support in critiques of the psychosocial approaches (see Macleod and Davey Smith, 2003; Marks, 2004; Stephens, 2014). They focus on the importance of income and living conditions. At the micro level, it is argued that in more unequal societies those worse off have fewer economic resources, leading to increased vulnerability to various health threats. At the macro level, high income inequality contributes to less investment in the social and physical environment. In addition, it has been argued that sustained exposure to stress from various sources, including financial hardships and poor living conditions, can have adverse biological effects and subsequently various health problems (Taylor et al., 1997). Those who favour the neo-material explanations argue that the psychosocial explanations ignore the broad political context within which social and health inequalities are nested.
There are also the artefact and selection explanations of the social inequalities in health. Although these initially attracted attention, there is less support for these arguments today.
Contemporary research has focused on the relationship between the extent of social inequality in a particular society and the extent of ill health. Wilkinson (1996) argued that health was poorer in more unequal societies. In their book The Spirit Level, Wilkinson and Pickett (2010) provided a comprehensive analysis of the empirical association that exists between health/social problems and inequality among rich countries. For example, higher infant mortality rates were shown in countries where income inequality is high. The same index of health/social problems was found to be only very weakly related to national income but strongly related to inequality. Wilkinson and Pickett (2010) hypothesized that the structural inequality in society causes people to become more anxious, stressed, ashamed, untrusting and unhappy. In the same year that The Spirit Level was published, the Equality Trust was founded by the authors and Bill Kerry. This charity aims to develop and promote policies to reduce social inequalities. The group is currently working on a documentary to widely disseminate key messages from the book (for a trailer, see www.equalitytrust.org.uk).
Torre and Myrskylä (2014) examined the relationship between income inequality and health using data from 21 developed countries over a 30-year period. Findings suggested that income inequality was positively related to the mortality of males and females at ages 1—14 and 15—49. The positive correlation between income inequality and mortality of females was also found at ages 65—89, although this relationship was weaker than for the younger age groups. These findings suggest that narrowing the income inequality gap may be an effective way to promote health, especially among children and young to middle-aged groups. However, we need to remember, once again, that correlation does not mean causation. As previously argued, the relationship between income inequality and health is not as straightforward as was initially conjectured (Lynch et al., 2004). However, as Lynch and Davey Smith (2002) also warned, we should be careful not to throw the ’social inequality baby’ out with the ’income inequality bathwater’. There is much more to social inequality than inequality of income.
What do lay people have to say about social inequalities in health? This literature connects with the broader literature on popular health beliefs (Chapter 6). In an early qualitative study with working-class women in England, Calnan (1987) found that women were reluctant to accept that they were less healthy than middle-class people. As one working-class woman said: ’I think as long as they eat the right foods and do have a proper balanced diet, I mean, even the poorest of people can be just as healthy as the others’ (Calnan, 1987: 76). Those who did accept that wealthy people had better health attributed it to differential access to health care. Conversely, professional women were more likely to accept the existence of a health gradient and attributed the poorer health of working-class people to low job satisfaction, low wages, poor diet and the hazards of the working environment.
The reluctance of working-class people to attribute the cause of social variation in ill health to structural factors was explored by Blaxter (1997). Her secondary analysis of a large survey of British health and lifestyle found limited evidence of popular discussion about health inequalities. This was especially the case among people from poorer backgrounds.
Lofters et al. (2014) explored how residents from Ontario attributed income-related health inequalities. They conducted a telephone survey (n = 2,006) and found that the majority of respondents were most willing to attribute income-related health inequalities to differences in employment, social status, income and food security, and least willing to attribute inequalities to differences in early childhood development, social exclusion, the social gradient, and personal health practices and coping skills. Findings also suggested that participants were more willing to accept messages that framed inequalities around privilege of the rich or the plight of the poor and were less likely to agree with messages that implied blaming the poor.
Critics of research into social inequalities in health often charge that social inequalities are an inevitable part of life and are also necessary for social progress. An alternative perspective is to consider not simply inequalities per se but inequities in health. According to Dahlgren and Whitehead (1991), health inequalities can be considered as inequities when they are avoidable, unnecessary and unfair. The issue of fairness leads us to consider the issue of social justice.
A useful starting point is the theory of ’justice as fairness’ developed by the moral philosopher John Rawls (1999). He identified certain underlying principles of a just society, as follows:
Assure people equal basic liberties, including guaranteeing the right of political participation.
Provide a robust form of equal opportunity.
Limit inequalities to those that benefit the least advantaged.
Daniels et al. (2000) argued that adhering to these principles would address the basic social inequalities in health. They detailed a series of implications for social organization that flow from the acceptance of these principles. First, assuring people equal basic liberties implies that everyone has an equal right to fully participate in politics. In turn, this will contribute to improvements in health since, according to social capital theory, political participation is an important determinant of health.
Second, providing measures actively to promote equal opportunities implies the introduction of measures to reduce socio-economic inequalities and other social obstacles to equal opportunities. Such measures would include comprehensive childcare and childhood interventions to combat any disadvantages of family background (Daniels et al., 2000). They would also include comprehensive health care for all, including support services for those with disabilities.
Finally, a just society would allow only those inequalities in income and wealth that would benefit the least advantaged. This requires direct challenge to the contemporary neoliberal philosophy that promotes the maximization of profit and increasing the extent of social inequality. A Framework Convention on Global Health (FCGH) grounded in the human right to health could help to reconstruct global governance for health and offer a new vision post-Millennium Development Goals (Gostin and Friedman, 2013).
To an increasing extent, psychological organizations have been recognizing the links between poor social conditions and physical and mental health. Somewhat belatedly, they are catching up with Villermé’s and Engels’ findings from the 1840s. But why is awareness of social justice issues among the psychology profession so slow in the making? The American Psychological Association was founded in 1892, but it took more than 100 years for the Association to pass a resolution on ’Poverty and Socio-economic Status’ in the year 2000. The resolution called for a programme of research on the causes and impact of poverty, negative attitudes towards people living in poverty, strategies to reduce poverty, and the evaluation of anti-poverty programmes. The resolution has been followed by a few new initiatives, including interventions facilitated by critical and community health psychologists (see Chapter 17). A special issue on poverty reduction was published in the Journal of Health Psychology in October 2010.
Much more could be achieved if psychologists were more willing to engage with social justice issues ’in their own backyards’. Shamefully, in our opinion, societies like the British Psychological Society have maintained a stance of neutrality on the grounds that the society is a charity and that it is prohibited from engaging in political issues. But times are changing. At the 2017 Annual Conference, the outgoing President Peter Kinderman delivered an address entitled ’Psychology is action, not thinking about oneself’ (Kinderman, 2017). In this he called on psychologists ’to speak out about those social, economic and political circumstances that impact on our clients and the general public, and to bring such evidence to politicians and policy makers’. Social justice isn’t simply a political issue; it is a life and death issue, affecting the mental and physical well-being of billions of people. It is a problem that is too important to leave to politicians. It affects everybody; everybody can do something towards creating a more just society.
A focus on individual change to the neglect of the broader social determinants of health and illness accepts the status quo instead of challenging it and only leads to victim blaming. There is a need for what Horrocks and Johnson (2014) have described as a ’socially-situated’ approach to promoting health and preventing illness. The continued focus on individual behaviour change strategies reflects powerful ideological interests (Braun and Fisher, 2013). Health psychologists can challenge the current dominant neoliberal ideology through, for example, aligning with popular health movements for change (e.g., People’s Health Movement, 2000).
The Universal Right to Health
Justice is about rights and freedoms. People talk about rights and freedoms of different kinds, e.g., the freedom of expression, the right to vote, having equal rights, and so on. ’Human rights’ refer to the fundamental moral and legal social norms necessary for people to live a minimally good life. Every individual is entitled to human rights simply because that person is human. International declarations and legal conventions have been issued by governments and international organizations to ensure that such rights are respected and protected. The Universal Declaration of Human Rights (UDHR) is an example of an international standard that outlines our most basic human rights (United Nations General Assembly, 1948). It affirms that all human beings are ’born free and equal in dignity and rights’ (Article 1). These rights are universal and indiscriminate of ’race, color, sex, language, religion, political or other opinion, national or social origin, property, birth or other status’ (Article 2).
Can we talk about rights to health in a similar way? In 1946, the World Health Organization first expressed the right to health as a fundamental human right. Although not legally binding, the UDHR two years later provided the foundation for succeeding laws and policies adopted by governing bodies and states around the world. It is formed of 30 articles consisting of the most comprehensive statements concerning human rights and includes security, liberty, political, equality, economic and social rights. In particular, Article 25 affirmed the human right to a standard of living for adequate health and well-being through the provision of food, clothing, housing and medical and social services. The promotion and protection of these rights are prerequisites to a dignified, free and secure way of living.
The right to health is intricately linked with other civil liberties and freedoms. To illustrate this link, it is worth considering the effects of human rights violations on the health and well-being of its victims. Just think of the consequences of ethnic cleansing, slavery, war, genocide and other forms of social aggression and cruelty. The histories of countries such as the USA and the UK and other European powers show many well-known examples of these kinds of abuses. These crimes against humanity reflect how violations of human rights can lead to debilitating consequences for the physical, psychological and social well-being of others. As shown in Box 5.2, the development of effective interventions in the context of violence and conflict need to take into account historical and psychosocial factors that influence health and well-being.
Box 5.2 International Case Study: Using a Psychosocial and Participatory Approach to Health in the Context of Violence and Conflict
While several studies have been conducted to explore the relationship between health and physical activity, most of these have been conducted in Western contexts. In communities where violence and conflict are prevalent, it is important to also consider the impact of historical and socio-cultural factors and the prevailing incidence of racism, violence, sexual abuse and discrimination experienced by community members.
The project described by Ley and Rato Barrio (2013) was called Acción Psicosocial a través del Movimiento, Juego y Deporte (Psychosocial Action through Movement, Play and Sport). This project was based in a rural area of Guatemala with two groups of women who had suffered from violence. It used a psychosocial and participatory approach to develop the use of sports and games as educational and therapeutic tools. The methods of movement, games and sports used in the project included physical (e.g., progressively increased physical activity of middle-low intensity, stretching and relaxation exercises) and psychosocial and educative activities (e.g., cooperative games, modified sports, role-play, verbalization of experiences and perceptions). A mixed method approach was used combining questionnaires, participatory observation and interviews to examine the effectiveness of the programme in promoting health.
Quantitative findings reflected improvements in a sense of coherence and self-esteem among participants. Results suggest that the programme provided opportunities for women who suffered from violence to socialize and offer mutual support. Modified sport, games and participatory group activities that were conducted in an active and enjoyable way also facilitated group interaction. By enabling participants to share their experiences of violence and domestic conflicts in a safe and protective space, they were able to express their feelings and to explore potential solutions with others. This process contributed to mutual learning and enabled participants to reconstruct their perceptions of the world and to reflect on how their circumstances could be improved.
Using a psychosocial and culturally grounded use of games and sports as participatory tools may be useful in promoting health in the context of violence and conflict.
Source: Ley and Rato Barrio (2013)
People with poor health may also suffer from an increased vulnerability to human rights violations due to their fragile state. The stigma associated with their condition may increase their vulnerability to discrimination and maltreatment, as discussed below.
Stigma refers to unfavourable reactions towards people when they are perceived to possess attributes that are denigrated. Stigmatization is universal; it is found in all cultures throughout history. The majority of people will experience it at some time, as both the young and the elderly are stigmatized groups. In addition, people can be multiply stigmatized, as in the case of HIV infection and AIDS, which is associated with certain highly stigmatized groups (e.g., homosexuals, sex workers, intravenous drug users) and adds a further source of stigma as well as intensifying existing stigma(s) (see Chapter 23). Stigma involves a pattern of discrediting, discounting, degradation and discrimination, directed at stigmatized people and extending to their significant others, close associates and social groups. Link and Phelan (2014) used the term ’stigma power’ to refer to instances whereby exploitation, control and exclusion of others enable people to obtain what they want. They argued that stigmatization is most effective in achieving its prejudiced aims when it is hidden or ’misrecognized’.
Stigmatization devalues the whole person, ascribing them a negative identity that persists (Miles, 1981) even when the basis of the stigma disappears (e.g., when someone recovers from mental illness they remain characterized forever as a person who had mental health problems). It is a form of social oppression and operates to disqualify and marginalize stigmatized individuals from full social acceptance and participation. Health care professionals are as likely to stigmatize as any other group, influencing their behaviour and decision-making in the provision of health care. The consequences of stigma include physical and psychological abuse, denial of economic and employment opportunities, non-seeking or restricted access to services, and social ostracism. It is not surprising, then, that individuals frequently expend considerable effort to combat stigmatization and manage their identities, including passing (acting as if they do not have the stigmatized attribute), covering (de-emphasizing difference), resistance (e.g., speaking out against discrimination) and withdrawal. They may also internalize the stigmatization, feeling considerable guilt and shame and devaluing themselves. Kadianaki (2014) argued that coping with stigma could be seen as a meaning-making effort to enable those who are being stigmatized to transform the way they see themselves and to orient themselves in society.
The pervasive Western idealization of physical perfection, independence and beauty may play an important role in the constant devaluation of disabled people and people who are ill. Particular characteristics of illness or disablement increase stigmatization, including perceptions that the condition is the person’s own fault (e.g., obesity), is incurable and/or degenerative (e.g., Alzheimer’s disease), is intrusive, compromises mobility, is contagious (e.g., HIV infection and AIDS) and is highly visible. Goffman (1963) distinguished between ’discredited’ and ’discreditable’ categories of stigma. ’Discredited’ refers to conditions that are self-evident, in which the stigma is visible. ’Discreditable’ conditions relate to conditions where the stigma is not visible but may be discovered, at which point they will become stigmatized. Stigma is also increased when it is perceived to be threatening or disruptive (Neuberg et al., 2000), which may account for the high level of stigma associated with mental illness, intellectual disabilities, and HIV infection and AIDS.
The lower value placed on the lives of disabled people can be seen in the way disabled people are segregated from the general population, including in education, housing, employment and transportation. It is also apparent in the way crimes against disabled people are minimized (e.g., discourses of abuse rather than theft/fraud/rape, acquittals and light sentences in cases of ’acceptable’ euthanasia). For both disabled people and those with severe or terminal illness, stigma may be central to debates around suicide/euthanasia and abortion (see below). Stigma is a powerful determinant of social control and exclusion. By devaluing certain individuals and groups, society can excuse itself for making decisions about the rationing of resources (e.g., HIV antiretroviral drugs), services (e.g., health insurance exclusions), research funding/efforts and care (e.g., denying operations to individuals who are obese) to these groups. In terms of the social model of disablement, stigmatization may be the main issue concerning disablement.
Multidisciplinary research is needed to further explore how stigma is related to health, disablement and social justice. Why is recognition of the similarities between stigmatized and non-stigmatized individuals overridden and obscured by perceived differences that are devalued? How do different stigmas, particularly health-related stigmas, interact? How is stigma manifested by health care professionals and what interventions might mitigate the negative effects of stigma?
Lives Worth Living versus the Right to Die
The pervasive devaluation of people with disabilities, and the negative assumptions about their lower quality of life, are central to the current debates about the abortion of impaired foetuses and the legalization of assisted suicide/euthanasia or the right to die. Disablement rights organizations champion the argument that abortion decisions should not be made on the basis of foetal impairment indicators, whereas they challenge the ’right-to-die’ rhetoric on the basis of disablement.
The disablement movement argues against abortion on the grounds of potential impairment due to the eugenic implications of such a practice (Sharpe and Earle, 2002). The reason for their concern is encapsulated in Singer’s quote: ’the killing of a defective infant is not morally equivalent to the killing of a person; very often it is not morally wrong at all’ (Singer, 1993: 184). The new genetic testing and selection technologies allow the identification of suspected foetal impairment during pregnancy and subsequent foetal termination. Shakespeare (1998: 669) argues that such technologies operate as a weak form of eugenics ’via non-coercive individual choices’ based on the assumed unacceptable quality of life of disabled people. The rationales for screening and termination include assumptions that people with disabilities are more costly to society, that the lives of children with disabilities are harmful to their families, and that some impairments involve a level of suffering and misery that makes life not worth living.
The way professionals describe test results and the influence of the advice they give is also a concern. There is substantial evidence that the advice given, while often subtle, most frequently encourages termination in response to potential impairment results, and most testing takes place within a plan-to-abort context. There is a tension between this argument and the feminist position that women have a categorical right to make decisions about their own bodies, including the decision to terminate an unwanted pregnancy. However, the disablement movement position is not against abortion itself; rather, it revolves around the bases upon which the decision is made. Aborting a specific foetus on the basis of a devalued attribute is different from aborting any foetus on the basis of not wanting to have a child at that time (Fine and Asch, 1982). It is unlikely that a woman would be encouraged to terminate a pregnancy because a test indicated the child is likely to have ginger hair; however, the same is not true when a test suggests a possibility of impairment. It is this difference that makes it an issue of discrimination. The disablement movement also asserts the rights of disabled women to have children. This fundamental human right is denied to many women, particularly those with cognitive and emotional impairments, as the additional support and resources that they need to allow them to raise a child are often not available. In some countries forced sterilization still occurs, including Australia, Spain and Japan.
The right-to-die debate revolves around the argument that people with severe or terminal illness and people with disabilities have the right to end their lives when they feel they have become unbearable, and that assisting them to do so should not be illegal. In May 2013, the Assisted Dying Bill was tabled at the UK House of Lords and received its second reading in July 2014. Modelled on a law in the US state of Oregon, the Bill proposed enabling adults who are expected to live six months or less to request and be provided with assistance to end their own life. It requires two doctors to confirm that the person (1) is terminally ill; (2) is capable of making this decision; and (3) has formed a settled intention to die. This decision must have been reached as an informed choice, made voluntarily and without force. Both doctors must also confirm that the person has been fully informed of available care options. Once the doctors have signed the declaration, the life-ending drug will be prescribed and dispensed after 14 days. This period can be shortened to six days if the prognosis is less than a month. The person who made the request to end his/her life will administer the drug. We discuss this issue in more detail in Chapter 25.
The argument against the right-to-die lobby, although implicitly anti-suicide, is not necessarily about whether suicide is right or wrong per se. It should be viewed as being about the differential treatment of the issue for people with disabilities and severe illnesses as opposed to ’healthy’ people. Morally sanctioning assisting people with incurable terminal or non-terminal conditions to end their lives or withholding life-sustaining treatment/support, while morally opposing the right of suicidal ’healthy’ individuals to end their lives (and offering them suicide prevention interventions), equates to a severe form of discrimination based on the stigmatization of these individuals.
If inequalities can be reduced at all, the evidence suggests that this will only happen by adopting a thoroughly multi-layered approach. Dahlgren and Whitehead (1991) identified four different levels for tackling health inequalities:
· Strengthening individuals.
· Strengthening communities.
· Improving access to essential facilities and services.
· Encouraging macroeconomic and cultural change.
These four levels correspond to the four layers of influence in Whitehead’s ’Onion Model’ of the determinants of health outlined in Chapter 1 (see Figure 1.5). Extra microsystem and mesosystem levels, as in Bronfenbrenner’s model, could perhaps be added to Whitehead’s list. Psychologists do not usually talk quite so simplistically about ’strengthening’ individuals; they analyse the personal characteristics and skills associated with positive health (e.g., self-efficacy, hardiness, sense of coherence, social skills). Developing interventions aimed at individual health beliefs and behaviours is a core feature of psychological theory, research and practice.
Interventions aimed at tackling inequalities at an individual level have shown mixed results. There are four possible reasons. First, people living and working in disadvantaged circumstances have fewer resources (time, space, money) with which to manage the process of change. Second, health-threatening behaviours, such as smoking, tend to increase in difficult or stressful circumstances as they provide a means of coping. Third, there may have been a lack of sensitivity to the difficult circumstances in which people work and live that constrain the competence to change. Fourth, there has been a tendency to blame the victim. For example, cancer sufferers may be blamed for the disease if they are smokers on the grounds that they are responsible for the habit that caused it.
Overall, efforts directed at the individual level have been inconclusive and small-scale. Because most health determinants are beyond the control of the individual, psychological interventions aimed at individuals have limited impact on public health problems when considered on a wider scale. There is a need for psychologists to work beyond the individual level, with families, communities, work sites and community groups. We are not alone in thinking that structural changes at a societal level are ultimately required if the prevalent inequities are ever going to be reduced. Anything else is simply tinkering, a case of ’fiddling while Rome burns’.
There is increasing interest in social capital as an aid to explaining social variations in health. The concept was especially promoted by Robert Putnam, who used it to characterize civic life in Italy (Putnam et al., 1993). He argued that certain communities had higher degrees of civic engagement, levels of interpersonal trust and norms of reciprocity. Together, these characteristics contributed to a region’s degree of social capital. Putnam (2000) subsequently explored the extent of social capital in the USA, and argued that over the past generation there has been a steady decline in participation in social organizations and thus a steady decline in social capital. An important distinction that Putnam (2000) makes is that between ’bridging’ and ’bonding’ social capital. ’Bridging’ social capital refers to links with diverse groups and provides an opportunity for community members to access power and resources outside their community, whereas ’bonding’ social capital refers to inward-looking social ties that bond the community together. Campbell (2004) stresses that both forms of social capital are essential in building healthy communities.
There has been a series of studies investigating variations in social capital and its connection with health. For example, in a national cohort of Open University adults in Thailand (n = 82,482), self-assessed health was shown to be significantly associated with social trust and social support (Yiengprugsawan et al., 2011). Gilbert et al. (2013) conducted a meta-analysis of social capital, self-reported health and mortality. A total of 39 studies were included in the analysis. Findings suggested that high social capital can increase the odds of good health by 27%. Furthermore, social capital variables, such as reciprocity and trust, increased the odds of good health by 39% and 32%, respectively.
Recent studies have explored the pathways linking social capital with health. In a study with church-going Latinas in California, Martinez et al. (2013) explored the relationship between leisure/physical activity and social cohesion. Leisure/physical activity and neighbourhood cohesion were assessed at baseline, three months and six months after the implementation of a promotora-delivered pilot intervention. Promotoras are community health leaders who help with the dissemination of health information to community members. They are locally based and have very similar characteristics to the target population. They were given training on how to lead walking groups, general information on the health benefits of physical activity, and information on the barriers to and facilitators of physical activity, especially among the Latino community. Evaluation of this intervention showed that social cohesion was an important predictor of physical activity (i.e., social cohesion at three months can predict levels of physical activity at six months). The authors suggested that it is possible that the promotoras enhanced social cohesion by providing participants with a sense of belonging and friendship while facilitating these activities. Considering the effectiveness of this approach in promoting leisure-time physical activity, it was argued that intervention coordinators can learn to maximize the benefits of working with community-based facilitators to promote health and well-being.
Participatory and community-based approaches can help to address issues related to poverty and health by empowering individuals and communities more widely (Ng, 2010). For example, Lawson et al. (2014) explored the benefits of participating in a community arts project among people living with mental health problems. The community members selected artwork and curated a public exhibition. Interviews suggested that participants had improved self-worth and lost some of the stigma associated with mental health issues. The project also offered a sense of belonging and helped participants to develop new knowledge and skills.
Scheib and Lykes (2013) facilitated a participatory action and photo elicitation research project in post-Katrina New Orleans from 2007 to 2010. Eleven African-American and Latina women took part in the project. Findings suggested that in developing ties and new ways to respond to the consequences of an ’unnatural disaster’, the participants developed intra- and inter-group empathy and the capacity to critically examine the social and structural determinants of health inequities.
Other studies have explored the relationship between economic deprivation and social capital. For example, Cramm et al. (2010) examined the effects of income, health, social capital and other socio-economic factors on the subjective well-being (SWB) of poor communities in the Eastern Cape of South Africa. Findings showed that income was positively associated with SWB and that social capital can predict SWB in all income groups. Similarly, Ahnquist et al. (2012) examined the interactions between economic hardships and social capital on health outcomes. Data were derived from the 2009 Swedish National Survey of Public Health. Findings showed that economic capital and low social capital were significantly associated with poor health outcomes. There were also significant interactions between economic hardships and all types of social capital.
Social capital, or its lack, has been linked with health inequalities. Uphoff et al. (2013) systematically reviewed evidence on the associations and interactions between social capital and socio-economic inequalities in health. Of the 60 studies that met the inclusion criteria, 56 showed significant correlations between social capital and socio-economic inequalities in health. Twelve studies showed how social capital can act as a buffer against the negative effects of low SES on health, while five concluded that social capital has a stronger positive effect for people with a lower SES.
Exploring the wider impact of social capital on health, Campbell et al. (2013) examined the role of social capital in managing HIV infection and AIDS in rural Zimbabwe. They reviewed six qualitative studies and found that community membership is often, although not always, associated with decreased HIV incidence and reduced stigma. It is also associated with better access to services, especially among women. Findings suggest too that participation in community groups, whether these are formal or informal, provides opportunities for critical dialogue that enable community members to reflect upon social norms and personal experiences and to discuss potential action to address community issues. However, despite critical engagement, plans for community improvement are usually constrained by social and economic factors. Although raising critical awareness and capacity-building are important in reducing health inequalities, it is crucial that unbalanced power relations and unfair structures are also considered since participatory and community-based action research projects are prone to problems of resistance from dominant social groups (Estacio, 2013; Stephens, 2014; see also Chapter 14).
There has been a wide range of criticisms of social capital as an explanatory concept (e.g., Lynch et al., 2000). These include confusion over what exactly the term implies, debates over ways of measuring it, and ignorance of the broader political context. Bjørnskov and Sønderskov (2013) argued that social capital is not a good concept since contemporary research either conceptualizes it as several distinct phenomena or constructs it using other terms. Baum (2000: 410) also emphasizes caution in the use of the concept in that ’there are dangers that the promotion of social capital may be seen as a substitute for economic investment in poor communities particularly by those governments who wish to reduce government spending’.
Community Mobilization and Power
Considering that current global economic processes restrain the capacity of grassroots organizations to respond to structural challenges in health, it is important for future interventions to develop new methods to leverage power for such organizations (Speer et al., 2014). It is important to recognize the need to transform power relationships, not just at individual and community levels, but also at macro levels (Ansell, 2014). As shown in the case presented in Box 5.3, developing strategic alliances can help grassroots organizations to strengthen their political power to affect policy change. Developing partnerships for health and community development ’must be understood not as a tool for intervention, but as part of the interventions and definition of success’ (Aveling and Jovchelovitch, 2014: 34). The process of building partnerships involves critical reflection and is influenced by institutional and socio-cultural contexts.
Box 5.3 International Case Study: Creating Social Alliances to Influence Positive Policy Change
Speer et al. (2014) presented the case of ISAIAH, a faith-based community organizing group based in the Minneapolis—St Paul metropolitan area. It was formed in 2000 when three faith-based groups merged after recognizing that small groups do not have sufficient political power to influence change. It is now composed of 90 different organizations and uses a social action approach to affect positive policy change to address social inequity. The group had been instrumental in preventing the elimination of three stops for a light rail line being built in Minneapolis—St Paul. The communities that would potentially benefit from these transit stops were predominantly ethnic minority groups. The group influenced planning decisions and funding legislations by collaborating with neighbourhood groups and highlighting the link between transportation and health. As the authors noted:
Pursuing a deeper appreciation of the connection between health and transportation led ISAIAH leaders to policy professionals who emphasized the role of transportation for community vitality — through access to grocery stores, employment, schools, and affordable neighborhoods. Simultaneous to this discernment, ISAIAH responded to the Governor’s vetoes by revisiting state legislators and pushing back against the Governor’s neoliberal articulation of scarcity and limited resources. (Speer et al., 2014: 165)
To maintain the momentum of the group’s efforts, ISAIAH and its allies are currently working on a health impact assessment to explore land use policies to prevent the negative consequences of the rail line on marginalized neighbourhoods.
Source: Speer et al. (2014)
Campbell et al. (2010) showed that it is possible for people from disadvantaged communities to mobilize themselves to demand better social and economic conditions to improve health. They presented three successful pro-poor social movements in Brazil, India and South Africa wherein social groups demanded access to land, health services and life-saving medical treatment. A similar case is presented in Box 5.4, wherein pobladores successfully mobilized themselves to demand better living and working conditions in Chile (Hadjez-Berrios, 2014). In these case studies, although enabling disadvantaged groups to make their concerns heard were important aspects of the movement, the willingness of those in power to take these demands seriously proved crucial to the success of these campaigns. As Stephens (2010) argued, health promotion research and practice need to recognize how those in more advantaged social positions maintain and perpetuate unequal power relations in society. She noted:
Using social theories will enable us to develop research questions with a focus on making visible the practices of those with privilege that work to simultaneously preserve and increase power and access to resources while denying access to other groups. (Stephens, 2010: 997)
Box 5.4 International Case Study: Community Participation in Health During the Unidad Popular Government — Santiago de Chile (1970—1973)
The organization and mobilization of popular classes had a significant impact on the improvement of living and working conditions in overcrowded cities in Chile. In addition to the creation of the National Health System in 1952 and its later institutional development until 1973, the active participation of disadvantaged and marginalized communities, also known as pobladores, had mobilized social action to address local health problems in poor urban settlements. Community participation in health in Chile saw its peak with the arrival of the Unidad Popular Government in 1970. This ended abruptly in September 1973 due to a military coup that lasted for 17 years.
This qualitative study aimed to explore the experiences of community participation in health during the Unidad Popular Government in Santiago de Chile from 1970 to 1973. Participants included three former health government officials, three primary health care workers and six pobladores, who were directly involved with the movement.
Participants constructed community participation in health programmes from 1970 to 1973 as a multiple and dynamic response to the health and political challenges faced by communities. Three different moments in community participation in health were highlighted in the analysis. The first moment aimed to expand health care coverage, prevent diseases, educate pregnant women and prevent alcoholism through the development of ’Health Brigades’ inside settlements. ’Health Brigades’ were relatively autonomous organizations (mostly composed of young women) that were trained by health workers. The second moment was characterized by improvements in autonomy and widening of the scope of participation through grassroots participation in health decisions. In this context, health issues were no longer conceptualized in biomedical terms. Finally, the third moment in community participation in health was characterized by a growing understanding of the wider determinants of health and the development of comprehensive definitions of health related to the democratization of health services.
Community participation in health in Chile during the Unidad Popular Government contributes to a critical understanding of community participation, conceived as a dialectic and transformative action. In this context, the pobladores constituted themselves as social subjects who actively transformed Chilean health institutions by challenging the dominant and oppressive hierarchies in society.
Source: Hadjez-Berrios (2014)
It is the development of such ’receptive social environments’ that pro-poor advocates need to pay more attention to in future interventions (Campbell et al., 2010). Working with Papua New Guinean young people, Vaughan (2014: 184) argued that while facilitating critical thinking is useful, this process does not inevitably lead to action, thus highlighting the ’need to shift the focus of participatory research from supporting “safe social spaces” to supporting “transformative action in context”’. Campbell (2014) argued that lessons from the ’new left’ and the burgeoning global protest movements can provide useful insights into community mobilization in the current globalized environment.
In a review of what it would take to eradicate health inequalities, a report for NHS Scotland (Scott et al., 2013: 6) concluded that this can only be achieved ’if the underlying differences in income, wealth and power across society are reduced’. In a similar report, McCartney et al. (2012) reviewed the evidence for the higher rate of mortality in Scotland. They concluded that the continued high rates of mortality, despite improvements in health care, can be accounted for by a ’synthesis that begins from the changed political context of the 1980s, and the consequent hopelessness and community disruption experienced’ (2012: 459). Their summary of this synthesis of the evidence is presented in Figure 5.2.
It is a challenge for health psychologists to position themselves within this movement for change, but it is something that we need to reflect on as scholars and activists (Murray, 2012b). The life of Miguel D’Escoto Brockmann (1933—2017), whose frequently quoted exhortation opened this chapter, reminds us of this challenge. D’Escoto was a priest, a member of Nicaragua’s Sandinista government in the 1980s and ex-president of the UN General Assembly, whose commitment to social justice leaves a legacy and an inspiration. There is a need for a more social and political health psychology that is informed by contemporary debates about social change, but is also committed to the ideals of social justice (Murray, 2012a; Tileaga, 2013).
Figure 5.2 Representation of the synthesis of evidence of the cause of the higher rate of mortality in Scotland
Source: Reproduced with permission from Eslevier, Journal Public Health ’Why the Scots die younger: Synthesizing the evidence, June, 2012, Vol/Iss: 126 (6) pp.459—70
1. There is a need to clarify the character of the psychosocial explanations for the social inequalities in health.
2. Research on social inequalities needs to be combined with further research on ethnic and gender inequalities in health. Qualitative studies of the health experiences of people from different socio-economic backgrounds are of particular importance to our understanding of the psychological mechanisms underlying health variations. Further qualitative studies are also needed to explore the relationship between social positioning and health experience.
3. Forms of research on social inequalities in health need to explicitly consider how they can contribute to reducing them.
4. An essential aspect of future research is to consider the social and psychological obstacles to movements to alleviate social inequalities in health.
1. Health and illness are determined by social conditions.
2. There is a clear relationship between income and health, leading to the development of a social gradient.
3. Psychosocial explanations of these social variations include perceived inequality, stress, lack of control and less social connection.
4. Material explanations of the social gradient in health include reduced income and reduced access to services.
5. Political factors connect both psychosocial and material explanations in a broader causal chain.
6. Lay explanations of social inequalities in health include people’s immediate social and physical environment.
7. Social environment includes the character of people’s social relationships and their connection with the community.
8. Social justice is concerned with providing equal opportunities for all citizens. Socio-economic status (SES) and wealth are strongly related to health, illness and mortality. These gradients may be a consequence of differences in social cohesion, stress and personal control.
9. A health psychology committed to social justice needs to orient itself towards addressing the needs of the most disadvantaged in society.