Vulnerablity and risk across the life course

Abstract

This editorial forms part of a themed issue on vulnerability and risk across the life course. The six articles in this issue explore the issues that arise when key individuals are not considered competent to assess risks and make decisions. The articles by Bailey and her colleagues and by Cott and Tierne focus on older people whose competence is affected by cognitive impairment, Clarke and Edge and Eyles consider issues that affect babies and young children and Spencer and Thing and Ottesen explore the way older children or young people manage risk. All the articles show that risk is contested in terms of who should manage it and how it is defined. The articles indicate that relatives play a key role in assessing risk and making decisions on behalf of older people with cognitive impairment, babies and young children. Drawing on an empirical study of older people with cognitive impairment Cott and Tierne show that relatives are reluctant to intervene and take over decisions, as they do not want to undermine the independence of their elderly relative. They engage in a balancing act tolerating the normal hazards of everyday life but taking action when they identified new and worrying dangers or ‘red flags’. In the case of young children, as Clarke's analysis of articles in one high circulating mass print Canadian magazine, Chatelaine, mothers are expected to identify emerging behavioural and mental health problems and take expert advice to minimise harmful outcomes. However, expert advice on the nature and management of risk is contested. Edge and Eyles indicate that experts in Canada justified their decision to ban the chemical Bisphenol A from the babies bottles on evidence of potential harm, but the decision context was shaped by the ‘pro-health’ lobby campaign that appealed to emotions of the public emphasising the innocence and vulnerability of babies. The articles in this issue indicate the limit of the rational expert approach to risk. As Bailey indicates in a review of the literature on the care of older people with dementia, practitioners have tended to be risk averse, locating the risk in the older person and not in their social setting. Spencer and Thing and Ottesen show that young people see themselves as competent risk takers and have the self-confidence to resist adult and experts’ definition of risk. For these young people, the meaning of risk is embedded in everyday life and to enjoy life and have fun they have to balance time, energy and risks.

Keywords:

• risk
• risk assessment
• risk management
• older people
• babies
• infants
• children
• young people

Introduction

In this editorial, I consider the particular issues that arise when children, young people and older people are exposed to risk and the issues that arise in relationship to risk management. This editorial forms part of a themed issue on vulnerability and risk across the life course. A themed issue is similar to a special issue in that both have a linked series of original articles that focus on a specific aspect of health, risk and society. The articles in a special issue are brought together by guest editors as a response to a call for papers for the issue. In contrast, the articles in this themed issue were submitted independently, but given the number submitted on this theme, this is clearly an important area of research and scholarship and justifies bringing the articles together in a themed issue.

I start the editorial by considering the nature of risk assessment and the issues raised when individuals are not judged to be competent to rationally assess and use information about risks. I then consider the distinctive contribution that the articles in this issue make to our understanding of this distinctive aspect of the relationship between health, risk and society.

Alaszewski Andy

Centre for Health Services Studies, University of Kent, Canterbury, UK Email: [email protected]

Vulnerability and risk

Modern science has created a sophisticated body of knowledge of the causes and most effective ways of dealing with threats to health. Risk is a key part of this knowledge. Through the surveillance of populations (Armstrong 1995), medical experts identify groups who are vulnerable to specific types of illness and through public health measures seek to make vulnerable groups aware of their heightened risk and encourage them to take action to minimise this risk. When such collective protection fails, then doctors can diagnose the cause of health problems and prescribe treatment. In this context, the relationship between doctor and patient is based on informed consent, with the doctor assessing and communicating the risks of treatment and the patient making a decision based on these assessments. While there is evidence that individuals especially in stressful or high consequence situations find it difficult to understand or accept probabilistic reasoning (see for example Burton-Jeangros et al. 2013), such reasoning underpins the relationship between medical experts and citizens. In public health and personal health care, the health expert is expected to communicate risk information to competent individuals who make informed rational decisions about treatment options or collectively respond to advice on reducing risky behaviours and minimising potential harm. The articles in this issue explore what happens when the competence of individuals to rationally assess and use risk information is open to dispute.

While the decisions of competent adults often have implications for significant others, for example relatives and friends, these significant others have no formal rights or responsibilities in the decision-making process. However, in reality, most individuals when they have to make ‘fateful’ decisions about their health (Giddens 1991), decisions that can have serious and irreversible impact on their lives and health, do seek to involve significant others. As Gilbar (2012) has documented, such wider involvement in decision-making can only take place if both the patient and the health professional agree. However, when an individual is not considered to be a competent adult, then the situation changes. Children are legally minors, that is their parents or guardians are formally responsible for making important decisions on their behalves, though as children age so do their claims to be competent and to assess risks and make decisions as articles in this issue show (Spencer 2013, Thing and Ottesen 2013). In contrast, older individuals are treated as competent adults unless there is evidence that illness has affected their mental capacity, and that such incapacity is recognised in legal proceedings which allocate responsibility for assessing risk and making decisions to a relative or third party. Such formal allocation of responsibility is unusual, and it is more common for relatives to monitor their relative and to only interfere where and when they are concerned about issues of safety (see Cott and Tierne 2013, in this issue).

Thus, children as they age move towards becoming competent adults and assessing and managing risk whereas older people experiencing progressive cognitive impairment may lose the capacity to be independent adults who can effectively assess and manage risk. In both contexts, there are issues of who defines risk and potential conflicts over the definition and management of risk. In the case of older people with cognitive impairment, one of the key issues for relatives is when to intervene as such intervention can have harmful consequences. In the case of babies and young children, the responsibility of parents to protect is self-evident and the problem for parents is how to recognise hazards and what actions to take especially when there is conflicting or unclear advice. In the case of older children or young people there is often tension and conflict over risk assessment and management in everyday life, with young people claiming that they are competent to assess and balance the risks of everyday life. These issues are more fully explored in articles in this issue.

Ageing and risk

As I have already noted, ageing by itself does not affect the competence or rights of an individual to assess risk and make decisions about their health and health care. However, when their capacity is impaired, for example by dementia, then there is an issue of whether others should be involved in assessing risk and making decisions, and what form of involvement should there be. Articles in this issue by Bailey and her colleagues (2013) and by Cott and Tierne (2013) address these issues albeit using different data. Bailey and her colleagues use evidence from a review of recent literature while Cott and Tienre use in-depth evidence from 20 individuals who support older people with cognitive impairment who were living independently in the community.

Bailey and her colleagues (2013) note that risk and resilience are important concepts in the literature on the care of older people with dementia, and while they see them as linked in policy and practice they are often treated as unrelated or even conflicting concepts. They suggest that this disconnection between risk and resilience comes from policy-makers, managers and practitioners’ emphasis on a narrow hazard-based, safety-oriented approach to risk. They note that a practitioner and a manager tend to work within:

current social and cultural constructions of what it is to be a competent practitioner or an able manager, wherein mitigating potential future risk, signals the response of a competent practitioner. (Bailey et al. 2013, p. 397)

In contrast, Bailey and her colleagues note that literature indicates that the relatives and friends providing care and support and the older people themselves tend to focus more on the practicalities of everyday life, and to balance the different types of risk that are involved in day-to-day living.

In their review of the literature, they identify evidence that services supporting older people suffering from cognitive impairment are shifting towards a more integrated approach to risk. This shift involves a move from focussing on the intrinsic riskiness of the older people with cognitive impairment, managing vulnerable people, to a consideration of the context of this impairment and the ways in which the competence and independence of older people can be maintained and managing vulnerable situations. Bailey and her colleagues note that such an approach could and should be more widely adopted and they identify:

a broad trend of moving away from assumptions of risk as a negative event to be avoided and controlled by people other than the person with dementia, to one in which the external situation in which people live poses threats to them and in which policy and practices are moving to a greater level of individual responsibility. (Bailey et al. 2013, p. 391)

Bailey and her colleagues suggest that practice is increasingly grounded in greater collaboration between professionals and older people and their families with more emphasis on achieving positive outcomes through ‘risk enablement’, ‘positive risk taking’ or ‘reasonable risk’. However, there remains a disconnect between these more positive approaches to risk management and the legislation frameworks within which services operate, which emphasise the importance of preventing negative outcomes and protecting the vulnerable person.

Cott and Tierne (2013) use empirical evidence to explore how and when relatives take over the management of risk from an elderly relative who has cognitive impairment. They found that even when relatives felt that an older person's mental capacity was undermined by cognitive impairment and they were exposed to hazards as they live alone, they were reluctant to intervene in risk assessment and decision-making, as they felt this would undermine the older person's independence. They note that relatives wanted to maintain:

the older person's sense of autonomy and supporting their ability to continue to live alone. Families were particularly anxious not to upset the older person by shaming them or bringing attention to their problems. (Cott and Tierne 2013, p. 412)

This created a tension between relatives wanting to protect the older person from hazards while at the same time not undermining their independence. Most relatives resolved this tension through a balancing act, tolerating the normal hazards of everyday life, but taking action when they identified new and worrying dangers or ‘red flags’:

They [relatives] constantly balanced the unacceptable risks of physical harm with the unacceptable risks of challenging the older person's independence and self-esteem. (Cott and Tierne 2013, p. 412)

Babies, young children and risk

Babies and young children are seen as particularly vulnerable to risk and their parents or guardians are expected to protect them from hazards and harm. This responsibility underpins the development of intense and potentially anxious or paranoid parenting (Furedi 2001) through which parents seek to deflect potential blame by taking a risk-averse approach to childcare, seeking and following expert advice on the identification and management of risks. Indeed, this responsibility now starts with the initial conception of a baby, with the behaviour and moral responsibility of pregnant women subject to close scrutiny, and with mothers feeling they need to present themselves as responsible and risk averse (Coxon et al. 2012, Hoggart 2012).

Clarke's article (2013) explores the ways in which the expectations of parents and especially mothers have changed over the last 40 years. She analyses the ways in which articles in one high circulating mass print Canadian magazine, Chatelaine, portrayed children's mental health issues over two periods, 1970–1990 and 1991–2010, examining how these articles provided advice to mothers on dealing with ‘the awesome responsibility of raising a happy, healthy child’ (Chatelaine cited in Clarke 2013)

Clarke notes that childhood has become one of the most intensely scrutinised period of the human life cycle, as experts claim that many of the behavioural and psychological problems that affect adults have their origins and can be traced back to childhood and could be identified and dealt with by parents, that is they are the product of poor parenting. Articles in Chatelaine magazine offer mothers advice on how to identify early signs of problems and what sorts of actions they can and should take. There was continuity between the advice and guidance over the 40-year period. The articles presented the cause of development of behavioural problems and mental health issues as difficulties within the child and family that affected the child's emotional development. If these problems were recognised early enough, they could be dealt with by effectively managing and channelling these emotions.

Clarke identified a shift in emphasis between articles in the earlier period (1970–1990) and those in the later period (1991–2010). In the early period, the problems were mainly seen as manageable within the household, although if the problems became serious then the family might need external support and therapy. In the early period, articles tended to place:

unusual or challenging behaviours in a normal context treating it as temporary, understandable, and redeemable through close and empathetic listening to the underlying causes and the feelings behind behaviours. (Clarke 2013, p. 426)

In the later period, the emphasis shifted to the pathological child with the individualisation of responsibility and medicalisation of expertise. Authors of articles in this later period suggested that mothers had to be vigilant to the ever-present possibility that their child might be developing a serious mental health problem and they were responsible for seeking expert advice as soon as possible to prevent the development of such serious problems. Within the articles there was an increasing use of medical terminology including the explicit use of psychiatric labels for problems such as attention deficit hyperactivity disorder (ADHD) and there was a stress on medical or drug therapy. Clarke argues that authors of articles in this second period challenge the competency of mothers to deal with problems. In these articles, mothers:

as individuals, are to forthwith take their child, again as an individual, to the doctor for remediation, possibly involving pharmaceuticals. There is no turn to the rest of the family, to family therapy, to the community, to the organisation of the school, as possible sources of assistance. (Clarke 2013, p. 427)

The vulnerability of young children can also be used as part of broader debates within society, and used by claims makers as a form of moral blackmail in which policy-makers must give priority to and protect innocent and vulnerable babies and children. Edge and Eyles in this issue (2013) examine why the Federal Government in Canada was the first government to adopt a precautionary approach and ban the use of Bisphenol A, one of the world's highest volume chemicals, in babies bottles. In the case of Bisphenol A, there was some evidence that the chemical causes harm to laboratory animals and there were some possible effects on human populations, but no conclusive evidence of harm was found. In 2008, the government agency responsible for assessing the risk of substances decided that:

there was sufficient evidence to indicate that in the early stages of their development humans were sensitive to Bisphenol A, and while exposure levels were below those known to cause effects, the margins of safety for infant exposures were currently too small to ensure infants were not being harmed by Bisphenol A. (Edge and Eyles 2013, p. 437)

While the government advisers making the decision justified their action in terms of the evidence, it is clear that their decision was made in the context of contested claims and that ‘pro-health’ lobbyists used the vulnerability of babies and young infants to justify their call for a precautionary approach. Their claims were based on the moral issues involved and called for a precautionary decision to ensure that the most vulnerable in society were protected from harm. The lobby used emotive images of babies and young infants to seek the support of the public and key decision-makers and engaged in high-profile direct action that attracted media coverage, for example in 2007, storming the lawns of the Ontario Legislature as part of a ‘Ban Toxics Baby!’ rally.

Older children, young people and risk

In the case of older children there is, as we have noted, also a concern about their vulnerability but children and those concerned about their risk assessment and decision-makers often do not agree. Many parents and public health experts would endorse Slovic's (2012) representation of young people as essentially irrational individuals who are lured into many risky behaviours such as smoking and drinking alcohol, without consciously thinking about the risk. However, this view is not one shared by many young people who see their decisions as grounded in a good understanding of the world they live in (Laghi et al. 2012). In this issue, Spencer's and Thing and Ottesen's articles both explore the ways in which young people claim the right to assess risks and make decisions, as they believe adults do not understand the world they live in and the different sorts of risks they have to manage.

Spencer (2013) argues that when public health experts assess the risks that young people face, they tend to use a relatively undifferentiated approach to risk, one which disregards the complexity of the world young people live in and the different meanings they attach to concepts of health. In her study in central England, the public health experts she interviewed tended to problematise and pathologise young people and their health. They tended to categorise certain types of behaviour such as drinking alcohol as self-evidently risky and harmful to young people's health, and saw it as their job to make young people aware of these risks and encourage them to alter their behaviour.

The young people who participated in Spencer's study found this approach patronising and felt that it prevented a constructive dialogue on health which was grounded in the reality of their everyday life. They felt that there was some hypocrisy in adults’ desire to control their behaviour, as they could all give examples of adult's harmful alcohol consumption and cigarette smoking. The young people in the study felt that they were competent to manage and balance the various risks in their every-day life. For example, they felt they could drink sensibly and have ‘just enough to have a good time’. They recognised that ‘other’ young people could get it wrong and drink too much and smoke regularly, but they did not see these other young people as part of their social group.

The young people in Spencer's study had a clear framework of values that underpinned their assessment and balancing of risk. They wanted to be healthy but did not see health as the absence of illness rather they saw ‘being well’, ‘being happy’ and ‘having fun’. They saw themselves as part of a peer group of friends and that:

maintaining the ‘healthy self’ involved a range of activities such as ‘hanging out’, watching films, playing sports and ‘just having a laugh’… [They] highlighted some of the more positive and pleasurable aspects of, for example, drinking alcohol or smoking cannabis with friends, citing increases to their feelings of confidence and freedom to act within a particular social context. (Spencer 2013, p. 454)

The young people in the study were self-confident, they felt they could successfully manage their lives, balancing risks and benefits of behaviours such as drinking alcohol. They did not see the health promotion messages as relevant to their everyday lives, as the health experts who sent these messages appeared to have little understanding of the reality of their lives and of their competence in managing them.

Thing and Ottesen's article (2013) in this issue also explores the ways in which young people manage the risks of their everyday lives but draws on interviews with young people in Denmark, and focusses on the role of physical exercise in the lives of young people. As in Spencer's study, Thing and Ottesen found that young people did not see public health information as relevant:

They did not see information about possible future diseases or the probability of early death as relevant to them. They were interested in the ‘here and now’. (Thing and Ottesen 2013, p. 468)

Furthermore, the young people in the study did not see sport and physical exercise primary in terms of protecting their health, they saw it as a way of achieving their desired ends. In a general sense, they defined these in the same way as the young people in Spencer's study, as enjoying life and having fun but in the context of sport specifically as developing a desirable body and being part of a group of friends. They had an ‘ideal of the civilised body’, one which was not fat and undesirable, and they participated in fitness regimes whether they enjoyed them or not to try and achieve this ideal. They saw sports as an opportunity for:

‘being together’ with others in an environment that was life stimulating and fun… sports and partying (including alcohol consumption) cultures were not in conflict but were part of the same culture of optimism and components of their preferred lifestyle. (Thing and Ottesen 2013, p. 469, 463)

Thing and Ottesen argue that unless public health practitioners understand the realities of everyday life for young people and the values that underpin their actions, their messages will continue to be disregarded. These messages need to focus on the ways in which sport and exercise can help young people achieve their goals and recognise young people's aesthetic interest in life.

Conclusion

While the six articles in this issue consider risk in the context of different parts of the life cycle, there are a number of common themes.

In all the articles, risk is contested in terms of who should manage it and how it is defined. Bailey and her colleagues note that policy-makers, managers and practitioners tend to use a narrow hazard-based, safety-oriented approach to risk, and that a more collaborative stance in which they share power with the older people and their families provides the basis for a more balanced approach to risk with awareness of the potential of ‘risk enablement’. Cott and Tierne note that the relationship between older people with cognitive impairment and their relatives is complex and that relatives are balancing different types of risk, potential accident or injury versus loss of independence. While relatives only intervene when they see signs of danger, ‘red flags’, indicating significantly increased probability of harm, they place themselves in the role of the competent adult who has the duty and power to protect the vulnerable older person and intervene if necessary.

The articles also draw attention to the moral nature of risk and this is perhaps most evident in Clarke's and Edge and Eyles’ articles on babies and young children. Both these articles provide evidence for the high value in contemporary society attached to protecting babies and young children, as they are both innocent and vulnerable and failure to protect them from harm may prevent them from developing into competent adults and affect future generations. Edge and Eyles’ article indicates that while government advisers in Canada justified their decision to ban the chemical Bisphenol A from babies bottles, the decision was made in the context of contested claims about the risks of the chemical, and the ‘pro-health’ lobbyists based their claim that it should be banned on the emotional appeal, asserting that society had a responsibility to protect the most vulnerable from harm. In Clarke's study of how the popular Canadian Chatelaine magazine offers mothers of young children advice on how to identify early signs of behavioural and mental problems and what actions they should take, it is clear that mothers are expected to keep young children under constant vigilance and are responsible for their healthy upbringing. There is within the article evidence of the development of more intensive parenting in which mothers are expected to be at the front-line of medical intervention, by identifying early signs of pathology and summoning medical intervention.

In Spencer's and Thing and Ottesen's articles, it is clear that young people see themselves as competent risk takers and have the self-confidence to resist adult and experts’ definition of risk. For these young people the meaning of risk is embedded in everyday life, and to enjoy life and have fun they have to balance time, energy and risks. They are willing to put time and effort into developing a thin and desirable body but not to prevent illness and disease which are unlikely to affect them in the short-term. Similarly, they are willing to limit their consumption of alcohol but again not to protect their health but to show they could drink sensibly.

In all three areas, there is evidence of the importance of experts who can provide advice and guidance on the nature of risks and how they can be managed. Given these experts aim to enhance collective health and welfare, it is interesting to note that their advice is often considered unhelpful. This is perhaps clearest in the case of young people but is also evident in other areas. The problems seem to develop when risk experts seek to impose their own definition of risk, and disregard the social contexts in which individuals live. As I noted in a Themed Issue on drugs:

The success of the public health approach depends on the effectiveness of the communication, the extent to which potential users trust the source of information and advice and the extent to which those targeting the advice understand the perceptions and motivations of those [to whom the information is directed]. (Alaszewski 2011, p. 395)

As the articles in this issue show, advice will be ignored if it disregards the perceptions, motivations and lives of the individuals at which it is directed. The assumption that individuals will accept that certain actions will harm their health and they will rationally wish to reduce the levels of harms to which they are exposed does not take into account the benefits that users perceive, for example the pleasures of these activities.