Multimorbidity: a sociological perspective of systems

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Journal of Evaluation in Clinical Practice ISSN1365-2753

C O M M E N TA R Y

Multimorbidity: a sociological perspective of systems Christine Walker PhD1,3 and Chris L. Peterson PhD2,3 1

CEO, Chronic Illness Alliance Victoria, Australia Honorary Associate, School of Humanities and Social Sciences, College of the Arts, Social Science and Commerce, Plenty Rd, Bundoora, La Trobe University, Bundoora, Australia 3 Researcher, Epilepsy Foundation, Surrey Hills, Victoria Australia 2

Keywords sick role, social system, structure agency Correspondence Chris L Peterson School of Humanities and Social Sciences College of the Arts, Social Science and Commerce, Plenty Rd, Bundoora La Trobe University Bundoora Australia E-mail: [email protected] Accepted for publication: 14 June 2016 doi:10.1111/jep.12599

Abstract There has been a great tradition of looking at health and illness from a systems perspective. For clinicians and people with illnesses a lot can be gained by mapping the interface of different sectors to understand the nature of conditions. This paper aims to use Sturmberg et als. paper as a stepping off point to present a sociological approach to understanding multimorbidities and gain insights into the illness experience of these people in the greater social system of health and illness. Parsons’ sick role provides a useful systems concept through which we can understand the role of doctors and the experience of illness as social, beyond the personal. We also use Bourdieu’s concept of habitas and of structure and agency to make sense of multimorbidities being social, economic and a broader part of experiencing social systems. We posit that one option for people coping with multiple conditions is to change identity. We also examine the doctor and patient encounter for mutlimorbidities as being problematic as it forces attention on competence and responsibility in that continuing encounter

Introduction Sturmberg et al. [1] argue that multiple diseases are better appreciated as the body’s interconnected responses, that is, systemic to all types of challenges and its overall function. They develop a model of this interconnectedness around physiological, cellular and molecular pathways that result in either the experience of health or disease and that health care must apply this systems approach rather than dealing with treatment of symptoms. From a sociological perspective, we welcome this application of systems theory and seek to enlarge it to demonstrate that these concepts of health and illness interact with both the social system and the experiential. Despite Sturmberg et al’s [1] paper being an application of systems theory, in sociological terms, it is a limited application of systems theory and more closely represents the clinical microsystems approach. This may be described as having a team approach to a defined population (in this case people with multimorbidities) and having a system of information collection and support to the patients and their carers [2]. This approach demonstrates strong teamwork, continual improvement processes and consistency in its applications. As a support for people with multimorbidities such a systems approach will be a great benefit in their clinical care. However, it will not solve many of the problems people with multimorbidities face beyond the clinic. For example, Sturmberg et al. maintain that multimorbidity is a result of complex physiological processes, namely stress processes interacting with environmental and social network. They argue that stress plays a crucial role in multimorbidity and in the

complex physiological systems achieving equilibrium. A sociological approach to stress can take a number of pathways, but helpful in understanding the process is a structuralist viewpoint [3]. Selye [4] developed the concept of stress as a medically acceptable condition. The person views certain events in the environment as a threat and their immune system mobilises in order to respond and maintain health. An event may produce an initial biopsychosocial response, and if the event continues the person’s immune system starts to become compromised. If the threat remains over a long period the person may get very ill or even die. Stress produces adrenaline, nor-adrenaline and cortisol as the person interfaces with stressors in their environment. The less control the person has, the higher the cortisol excreted and this may lead to depression. These stressors are markedly affected by the person’s position and role in the socioeconomic structure. How they cope with stressors, either by active or palliative means will also be affected by their socioeconomic position. Consequently, stress is a biopsychosocial process but also strongly a social process as responses to stressors, the resulting coping approaches and any consequent illnesses are affected by social position and the supports provided by that. The social relationship between stress and illness and multimorbidity is largely under-recognised. Much has been written by sociologists on the role of health and illness and its place in societies [5–8]. It was Parsons who most successfully theorised the role of health and sickness in a social system. In his theory of social systems [9], Parsons argued that the concepts of money, power and status constituted a web of exchange in Western societies. The social system might be viewed as a social contract

Journal of Evaluation in Clinical Practice 23 (2017) 209–212 © 2016 John Wiley & Sons, Ltd.

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and a system of reciprocal behaviours. Illness is a threat to the functioning of a social system as an individual fails to meet the social contract and perform any reciprocal roles and thus risks being labelled as deviant. However, Parsons maintained that this deviance was allowable when the individual showed intention to overcome ill-health and return to the former place in the social system. Parsons maintained that medicine was a central institution in a modern social system. It both provided the sick person with a level of legitimacy (diagnosis and medical certificates) and enabled a return to health through care and treatment. In this sense medicine places the sick person under a social obligation to return to health [10]. For Parsons [9], being sick and a patient was a social experience that involved certain social roles. He argued that being sick is a social role. It involves being released from normal social roles such as work and family responsibilities until the person gets better. Usually, a medical practitioner issues a sickness certificate and this legitimates the sick role by abrogating them from their usual role responsibilities. Those who are sick are obliged to seek and take on competent help to get better. If sick people do not get better and assume normal roles, they face the risk of becoming deviant and may as a result suffer some punishment. Young [11] refers to Parsons acknowledging that his Sick Role concept includes chronic illness and the aim of management is to make the person well. Young also draws on Fox [12] who worked closely with Parsons and said that the management of chronic illness creates some strain between the doctor and patient relationships in the person becoming well and raises issues of competence, adequacy of treatment and meanings of illness. However, the aim is to have people resume their normal role functions. Williams argues ‘there is…much to be had from a return to, revisiting or revival of interest in Parsons’ insights in (the sick role) …not least in terms of contemporary debates within the sociology of health and illness and beyond’ [13] (p134). He further argues that themes such as emotions, the body, uncertainty, trust and health are relevant to Parsons’ thoughts and that in turn ‘provides the means for a profitable and productive dialogue or interchange between past and present sociological concerns and insights that in turn flags future potential agendas’ (13 p134). Walker [14] argues that if people have to leave their job due to chronic illness they may become entrenched in a deviant social identity. They may have no sign of disability but not be functioning independently. To move onto welfare may indicate a deviant identity. Assuming a Parsons’ view people should actively seek to return to a normal function by engaging in healthy activities and lifestyles. In many instances, however, people assume new identities by engaging in new occupations which open up to them because of their illnesses. Judgments are made by peers/employers about how responsible the person is in making themselves well [6,15]. With the emphasis on personal responsibility in relation to self-care of chronic diseases as well as placing people with chronic illnesses into employment, this has led to compounding deviant status: because some cannot work or work consistently enough to maintain a productive job. This however, is largely not acknowledged in policy [14].

Developing a social systems theory of multimorbidity What is often forgotten by critics of Parsons ‘sick role’ is that it did not stand alone; it was part of the larger theoretical works

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including the Structure of Social Action where actors are seen as acting in order to achieve some goal. This applies to both the role of the sick person and the role of the healer (in Parsons’ terms medicine). Medical practice carries authority whereas being sick means a loss of both authority and identity. In Parsons’ model of a Western capitalist economy, health and sickness are normative positions and employment and medicine are two important institutions to maintain the equilibrium of the system. Sickness, whether acute, chronic or multiple, represents threats to a social system. Townsend [16] uses Bourdieu’s concepts of structure and agency to make sense of structural and cultural aspects of multimorbidity. She maintains ‘the concepts of the habitus, physical capital and symbolic violence have been applied in research examining the influence of normative ideas about healthy bodies for individuals with disabilities and the link between broader structural and cultural factors on personal experience’ (16 p90). Forty-one people with four or more multimorbidities from a community sample were analysed by Townsend. Analysis was base around the following categories: firstly, ‘Habitus, capitals and the ill body; secondly, “Relational positioning”; thirdly, “Illness and symbolic violence” and fourthly, “The GP as dispenser of capitals” (16 p92). These people resisted negative labelling and attempted to live normal lives and have familiar identities. Townsend refers to ‘cascading hardships’ as a result of having multiple conditions. Under ‘habitus, capitals and the ill body’ she cites one woman who has to get her 82 year old mother to wash her hair and spoke of diminished capital as her illness affected family relationships. This disrupted a sense of being embodied at home. None of the 41 people were in paid employment, and ‘employment was expressed as a source of capitals; economic, social and symbolic’ (16 p94). One 50 year old spoke of the loss of the previous responsibility of being the provider, he once was: this status embodied structural features of class, gender and age. Under ‘relational positioning’, being able to function as a capable body is culturally valued behaviour and brings with it a number of different capitals. One woman in the sample cannot go out alone. She has a friend who comes over and watches TV with her, but the woman finds it difficult to understand that her friend chooses TV over going for a walk outside the house that she herself cannot do. She has lost a valued competency yet calls on behaviours that are culturally valued – this is her gaining symbolic capital. People from the study Epilepsy in the Later Years [17] represented those with one debilitating condition, epilepsy, and several comorbidities. People with epilepsy have been found in a community sample to have poorer socioeconomic status than the general population and poorer psychosocial conditions [18]. In the study of older people with epilepsy out of 100 people aged 65 years and older one had six multimorbidities (epilepsy, TIA, stroke, HBP, sleep apnoea and anxiety). Four had five multimorbidities and eight had four (they may have had more as a limited number of conditions were requested in the study). Being able to function as a capable body was already compromised for many with epilepsy, and the addition of several comorbidities would only magnify that experience. Under ‘illness and symbolic violence’ the people in the sample put on a brave face for their conditions. They tried not to discuss their illnesses in their social milieus in case they were seen as

© 2016 John Wiley & Sons, Ltd.


‘moaning’. One woman said ‘So I tend to over compensate with makeup, with getting probably overdressed, big cheesy grin on the face, laugh a minute and inside you’re crying and then you come home and you take it all off and you cry. . . again that’s me losing part of my independence’ (16 p96).. She does not want to receive a negative label. This is an example following Bourdieu of the blending of structure and agency – that is of cultural rules and choices. All in the sample were reluctant to see their GPs. One woman reported that she feels embarrassed as the medical receptionist may feel ‘not this woman again’. And there was a reluctance for medical help seeking, when many of the people where bound by cultural attitudes of responsibility and stoicism. One woman referred to this apprehension as personal irrationality that led to symbolic violence in relation to guilt in not seeking healthcare. In addition the structures of the healthcare system also create barriers. Under the ‘GP as dispenser of capital’ one of the sample referred to his GP saying he would help because the person with multimorbidities had displayed that he was a genuine patient and not a malingerer. In Bourdieu’s schema he was fit for the GP to enable multiple capitals in the context of his illness. This structuring of the medical domain has concrete consequences particularly in terms of moral behaviour for people with multimorbidities. ‘When people’s capacity diminished opportunities for economic, symbolic and social capital exchange their position in the structure was negatively impacted on. This was often accompanied by a loss of income. Through telling their stories they perceived themselves as morally adequate in relation to people who supported their positive identities. Townsend argues that GPs provide care and support and as such were “dispensers of capital…validating their claims to the sick role” in the context of the wider system” (16 p98)., The people in the study separated themselves from ‘malingerers’ or those who give in and make doubtful claims to sick and welfare roles. They also made what were regarded as valid identity claims for help seeking and self-management. The concept of the habitus helps understand lives of those with disabilities showing how ‘disabled bodies affect ’normative ‘ways of being’ and impairments help to reproduce structured inequalities. The people in Townsend’s study drew attention to bodies which don’t now function in relation to cultural norms. The different perspectives of patients and doctors can create difficulties in consultations, creating tension between doctor and patient as referred to earlier by Fox [12] . Townsend also argues against the principles of self-management : ‘For example, if we follow Bourdieu, it is unsurprising that people with chronic illness with prereflective and enduring dispositions resist behaviour change models of self-management, which neglect the structureagency balance and the “logic of practice” of individuals in relational settings’ (16 p99). Townsend’s work demonstrates that illness is relational to the larger social system. People want their conditions to be seen as ‘legitimate’ as opposed to ‘malingering’. This normative language fits with Parson’s view that people adopt a role in upholding a social contract and maintaining the social equilibrium. Townsend’s work also helps explain Walker’s view that despite their multimorbidites some people retain their identities as productive members of the social system or may adopt new ones as a result of their multimorbidities. Doctors have roles in both


Multimorbidity

validating that the person is ill and in assisting them to resume their roles or adopt new ones in maintaining the social system. Multimorbidity is innately threatening to the social system, as a whole. Not only are they generally chronic and possibly progressive, multimorbidities indicate the failure of medicine as an institution in maintaining the system equilibrium, because it can only legitimate illness and not cure. This in turn threatens other institutions such as the basis of the economy, that is, employment and education (for example, children with epilepsy are unable to complete school). Religious institutions may be perceived as feeble in not being able to offer hope in these situations while the welfare system is pushed to extremes. Political and research institutions must attempt to restore the role of medicine through new polices and initiatives. Consequently, a systems approach (note [19–21]) must take this broader approach where the major institutions of the social system consider their own microsystems and how responsive they are to the needs of people with multimorbidity. This requires a level of institutional agency across the whole social system.

Conclusion When dealing with illness issues such as multimorbidities a sociological approach can employ a systems perspective to make sense of the person’s opportunities to take action in the context of the broader society that places structural constraints on actions. It is important that clinicians recognise that social structural factors such as wealth, age and opportunity affect the individual with both simple and complex needs. On a micro level they would gain a better understanding of why patients act as they do in their medical help-seeking and aid in reducing strain in the management and care of those with multimorbidities. By understanding the legitimating role of medicine in the social system clinicians will be able to more ably assist people return to their previous roles in the social system albeit in a modified form or to adopt new positive identities.

Conflict of interest Neither of the authors have any conflicts of interests with this study reported.

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