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Section 2: Illness as a social role

 

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Concepts of health, wellbeing and illness, and the aetiology of illness: Section 2. Illness as a social role

 

This section covers:

1. Definitions of sickness, illness and disease

2. The sick role

3. Doctor-patient relationships

 

1.  Definitions of sickness, illness and disease

Although the terms are often used interchangeably, sickness, illness and disease have different meanings that reflect different perspectives. Disease is an objective term referring to diagnosable abnormalities in organs, body systems or physiology. Illness is a subjective term referring to an individual’s experience of mental and physical sensations or states, and may not necessarily indicate the presence of disease. Sickness encompasses both disease and illness.

The difference between illness and disease was summarised by Cassell (1976): “Illness is what the patient feels when he goes to the doctor, disease is what he has on the way home” (p.53). The view of illness as a social role is based on the premise that the behaviour of patients, doctors and carers is related to social perceptions or constructs of sickness.

 

2.  The sick role

Parsons (1951) described the ‘sick role’ as the rights and responsibilities of people who are sick. Rights include exemption from normal responsibilities, e.g. work, household or caring duties, and not being blamed for their illness; responsibilities include a duty to want to recover, and to seek medical assistance in doing so. It is assumed that these rights and responsibilities are temporary and universal, and that they work together for the benefit of the patient and in the interests of wider society.

While the sick role model can be applied well to acute or short-term diseases, e.g. flu or food poisoning, it has considerable limitations when applied to chronic or long-term health conditions. Firstly, it makes assumptions about illness and recovery that do not necessarily apply to chronic conditions: it assumes that there will always be recovery from illness, and also overlooks the fact that exemption from ‘normal’ duties is not always necessary. For example, the model was never able to satisfactorily explain how people with chronic conditions were able (or not) to manage both their social life and their illness. Secondly, it makes assumptions about the relationship between doctors and patients: that patients are essentially passive and doctors always proactive, and that medical assistance is always seen as helpful. Thirdly, it can encourage the blaming of patients for their health conditions, particularly where there is a lifestyle component (e.g. smoking or obesity).

Until relatively recently, this was the dominant model in describing the social aspects of living with a chronic illness. Section 6 describes the development and application of sociological approaches to experiences of chronic illness, which are more consistent with the shift towards patient-centred care.

 

3.  Doctor-patient relationships

Integral to social roles of illness are the interactions between doctors and patients. Research by Byrne & Long (1976) classified these interactions as two main types: doctor-centred and patient-centred. Doctor-centred interactions are doctor-led and paternalistic; the doctor is seen as an active giver of care and the patient as a passive recipient, with the doctor making decisions about the patient and communicating them in a direct, authoritative style. This style is characterised by closed questions and instructions, with information given rather than shared, and represents the traditional doctor-patient relationship (Scambler, 1997).

More recently many countries, including the UK, have seen a shift towards patient-centred care. Here the doctor-patient consultation is based on open communication with the patient, listening, reflecting and using probing questions to explore the patient’s experience and concerns. Patients are encouraged to be actively involved in their own care, and have access to their notes and correspondence. The concept of concordance, which describes a ‘therapeutic alliance’ in which decisions about care and treatment are shared between doctors and patients, is central to patient-centred care.

Within the NHS, the principle of ‘no decision about me without me’ is widely promoted.[1] Patients are equipped with more information and also play a vital role in providing it; the knowledge and expertise of patients is increasingly being recognised, with patients and the public not only consulted about developments in health and social care services, but involved in their creation (co-production).

Patient-centred approaches have benefits for both individual patients and healthcare systems. A recent systematic review (Doyle et al., 2013) found consistent positive associations between patient experience, patient safety and clinical effectiveness across a range of disease areas and settings. It has been demonstrated that involving patients in decisions about their treatment improves compliance with medication, adherence to treatment, and greater participation in self-care and monitoring (Vincent & Coulter, 2011); this in turn has a wider benefit by improving treatment effectiveness and population health. The term ‘patient’ has itself been contested, with terms like ‘service user’, ‘customer’ and ‘client’ increasingly used as alternatives (despite also being contested). These terms are perceived to empower individuals and give them ownership of their care, and to reduce the stigma associated with illness.

 

 

© I Crinson 2007, Lina Martino 2017