PPS Sociology of Chronic Illness and Lay Beliefs

Question 1

Epidemiology of chronic illness

Answer 1

The experience of living with a chronic illness is a characteristic feature of older age in the 21st century.

It reflects the long-standing trend in the decline in mortality from infections that began at the end of the 19th Century, with improved public health measures, including sanitation and a reduction in overcrowding in housing.

Combined with a rising standard of living post-Second World War that has led(up until recently) in a steady increase in life expectancy.

People are living longer, but many of these additional years are spent with long term health problems. As a consequence, the incidence of degenerative disorders has progressively increased, a major source of disability.

Question 2

LTC in current population

Answer 2

About 26 million people (approx 40% of the population) in England report having at least one long term condition (LTC). 10 million (15% of pop) report two or more LTCs, while 8 million people live three or more LTC’s. (eg diabetes, heart problems, cancer etc)

In health policy, the focus in more recent years has been much more on addressing the CONSEQUENCES of long-term illness as with establishing their causes.

Nevertheless, in the ‘Long Term Plan’ for the NHS (www.longtermplan.nhs.uk) published by the government in 2019, which was broadly welcomed for targeting measurable improvements in health outcome, there was barely a mention of multi-morbidity, despite the growing number of people living with long-term conditions. Joining-up social and health care is not a priority set out in this Plan.

Question 3

How is quality of life affected for someone with LTC?

Answer 3

Having a long-term condition can reduce quality of life. Using the EQ-5D (a standardised instrument for measuring health status) a survey published by the General Practitioner Patient, perhaps unsurprisingly shows a marked difference in average QL scores for those who are and those who not living with a LTC.

The quality of life score for people with a long-term mental health condition was the lowest QL.

Question 4

chronic illness and social class

Answer 4

Chronic illness and the degree of disability that accompanies it is also strongly related to socio-economic class position.

People from more disadvantaged social classes are more likely to experience financial, domestic and work-related difficulties as a result of their physical condition.

This outcome in part, reflects the direct costs incurred (because social care in England is means-tested) in home alterations, meeting special dietary requirements, additional heating costs, the extra costs arising from restricted mobility, employing a home help etc.

Question 5

Impact of covid-19 on people with LTC

Answer 5

Before the Covid pandemic took hold, around 85% of the burden of disease in the UK was from long-term conditions not passed from person to person.

Since the outbreak, the NHS has diverted resources to hospitals so they could manage high numbers of COVID-19 patients. Accommodating the surge in admissions has led to redeploying staff and facilities and suspending most planned care for patients with pre-existing health care needs.

As a consequence, there have been growing concerns about the policy response to meeting the health care needs of those with longer term health conditions.

Patients may choose not to access care or treatment because of fears they might contract or transmit COVID-19, or concerns about breaking the lockdown measures. Additionally, they may be finding it more difficult to get an appointment with their G.P, or the care they feel they need.

Question 6

Crisis approach (labelling theory)

Answer 6

This sociological approach focuses on the societal reaction to, rather than the physical impact of, living with a chronic illness.

It conceives the diagnosis of chronic as irreversibly changing the status of the individual; hence the use of the term’ crises’.

Labelling theory recognises illness as a deviation (or primary deviance) from the social ‘norm’ of healthiness. In a similar way to anti-social behaviour for example, is seen to breach the norms of civil life.

In modern societies, doctors as trained state-sanctioned professionals are given the role and responsibility of applying disease labels to categorise an individuals signs and symptoms.

Question 7

Crisis approach (labelling theory) issues

Answer 7

However, disease labels are not simply diagnostic categories (the ICD for example), they also carry with them social meanings.

Shared cultural stereotypes become attached to particular conditions, and these can serve to shape the reaction of others to those carrying such a label.

For example, the diagnosis of an STD or Liver Cirrhosis carries one set of (largely negative) symbolic meanings, whilst the diagnosis of multiple sclerosis would carry a very different set of social meanings – these social meanings can also change over time.

As a consequence, we often see a characteristic behaviour-change following diagnosis, often conforming to the cultural stereotypes of that condition – this is what sociologists term secondary deviance.

This process of secondary deviance serves to alter a person’s self-regard and hence degree of social participation.
Disease labels thus constitute a self-fulfilling prophecy, having the power to ‘spoil the sufferer’s identity‘ both personal and social.

This brings us on to the process known Stigmatisation.

Question 8

Stigmatism

Answer 8

Stigma is a concept concerned less with the social process of labelling a particular state of ill-health as a disease, than with the consequences of that process for an individual.

This is the set of social experiences that reference the problems associated with the ‘management of everyday life’ post-diagnosis.

The physical and social experiences that follow the diagnosis of a chronic condition can include isolation and gradual withdrawal from everyday social life. From here the gradual loss of confidence in communicating and interaction with others, and a restriction of social roles

Question 9

Enacted stigma vs felt stigma

Answer 9

The social stigma that results from the attaching of a disease label, derives not only from societal reaction which may produce actual discriminatory experiences (‘enacted stigma’).

It can also result in an ‘imagined’ social reaction or internalised sense of blame regarding the health condition, which can drastically change a person’s self-identity (‘felt stigma’).

Question 10

Courtesy stigma

Answer 10

Stigma can also spread out from the individual concerned to ‘infect’ others who are close to them i.e families, parents, etc – a process termed ‘courtesy stigma’ or ‘stigma by association’.

Question 11

Bottom up initiatives to address cultural stereotypes of ‘personal strategy’ and shame?

Answer 11

1. Educational anti-stigma interventions present factual information about the stigmatized condition with the goal of correcting misinformation or contradicting negative attitudes and beliefs. They counter inaccurate stereotypes or myths by replacing them with factual information. An example would be an education campaign to counter the idea that people with mental illness are violent murderers by presenting statistics showing that homicide rates are similar among people with mental illness and the general public (Corrigan et al., 2012). Most of the evidence on educational interventions has been on stigma related to mental illness rather than substance use disorders.
2. Mental health literacy programs are a common educational strategy. Educators, health professionals, and policy makers have recognized the important role of schools in addressing the mental health needs of young people and have endorsed the implementation of school mental health programs (Wei et al., 2013). There is evidence that some in-school mental health literacy programs improve knowledge, attitudes, and help-seeking behavior, but more research is needed before decisions to scale-up mental health literacy campaigns to the national level.
3. Across a wide range of stigmatizing conditions, people without the stigmatized conditions have little meaningful contact with those who have these conditions. Lack of contact fosters discomfort, distrust, and fear (Cook et al., 2014). Contact interventions aim to overcome this interpersonal divide and facilitate positive interaction and connection between these groups (Shera, 1996).

Question 12

Biographical disruption

Answer 12

The framework known as ‘Biographical disruption’ (Bury:1997), attempts to represent the experience of living with a chronic condition as representing a potential loss of ‘self’ in a struggle to maintain ‘normality’.

This struggle to maintain normality in the face of an illness diagnosis is conceived as a ‘trajectory’ over time.

A temporal conception of the changes wrought in everyday life as a consequence of the social and physical effects of a disease, rather than the much more immediate impact of being given a label/diagnosis.

But this model does share with labelling theory a conceptual understanding of the importance of the social symbolic meanings attached to disease labels.

These aspects of social meaning attached to a disease label are important in understanding the strategies that people employ following diagnosis.

The experience of chronic illness involves testing structures of within the practical constraints of home and work.

Pre-existing social and familial relationships do not guarantee positive responses.

The meanings of social relationships change as they are tested by the increased support required by someone living with a chronic condition, and so they can become altered as they are put at risk.

Question 13

What must individual do to alleviate risk in the biological disruption framework?

Answer 13

The meanings of social relationships change as they are tested by the increased support required by someone living with a chronic condition, and so they can become altered as they are put at risk.

This requires the individual to engage in a process of ‘renegotiating’ their existing relationships.

That is, an active coping response to changing social circumstances (known as ‘comeback’).

Here the term ‘coping’ is utilised in a relativistic sense in terms of each individual’s personal adaptation’s to living with a chronic condition.

That is, coping not in the normative use of the term found in the clinical context i.e as either a ‘successful’ or ‘unsuccessful’ response to physical impairment.

Question 14

3 analytical dimensions in social approach to health

Answer 14

Micro: the social phenomenon of illness as a lived experience

Macro: Explanations for certain patterns of health disease in certain social strata

Health is more than just the absence of illness.

Question 15

What does the sociological approach to health encompass?

Answer 15

The idea that health outcomes are due to an interplay between biological and social aspects.

Looking at the socio-cultural contexts that underpin one’s propensity to disease, and how this may inform patient care.

Using sociological frameworks, such as Dahlgren and Whitehead’s (1991) model of the social determinants of health, to explain the differences in disease progression and effectiveness of treatment between different social groups.

Understanding that health outcomes can present as a product of various social factors – e.g. health inequalities and socioeconomic class.

Looks at how socio-cultural beliefs shape individual concordance and compliance, in relation to patient care – i.e. allowing us to engage in person-centred decision making.

Question 16

Risky behaviour two theories?

Answer 16

Risk society thesis

Social construction of risk

Question 17

Risk society thesis

Answer 17

It is the perspective that the hazardous environmental costs of industrialisation (e.g., carbon emissions) now outweigh the benefits, and that technological ‘advancement’ is leading the world to environmental disaster

Through this theory, risk becomes a category of societal fear, forcing people to confront the possibility of an uncertain future, and a present in which the objects of risk are perceived to penetrate all aspects of modern society.

It is this fear and uncertainty that risk assessment and management strategies are responding to.

A consequence of the risk society theory is that perceptions of risk begin to become highly selective – e.g., peanut allergy (Christakis, 2008).

Secondly, the thesis is used as a diversion away from individual willingness to limit health-risk behaviours; that is, since there are much greater levels of risk embedded within society, changes at the individual level seem pointless.

Question 18

Social construction of risk

Answer 18

The social construction of risk theory acknowledges risk as a social construct, subjective in nature, and influenced by sociocultural environments.

The premise of the social construction: we create this shared value system in which we attribute meaning to familiar phenomena, in the midst of a background of social anxieties and uncertainties.

In this way, we routinely engage in risky behaviours (e.g., drinking, smoking, unprotected sex) without consideration or calculation of the actual risks posed (e.g., liver disease, cancer).

This can be explained by socialolgical research, which has shown that lay people tend to translate epidemiological analyses of risk into all-or-nothing messages.

As a result, preventative healthcare strategies face a challenge, since these all-or-nothing interpretations do not represent culturally-meaning knowledge – hence, the persistence of risky behaviours in the face of such strategies.

Question 19

What is the Crisis Approach to Chronic Illness?

Answer 19

This is the influence of a societal response to diagnostic labelling of chronic illness, on one’s behaviours.

1. A doctor diagnoses the individual with chronic illness, symbolising a deviation from normal healthiness – primary deviance.
2. This illness restricts the individual’s ability to engage in certain social activities and adopt certain roles, leading to an irreversible change of individual status and a negative labelling of the condition.
3. This negative labelling is magnified by shared cultural stereotypes of the illness in the form of media, producing enacted stigma as a response to this chronic illness.
4. The enacted stigma leads to a loss of individual self-identity due to an internalisation of imagined negative external perceptions – felt stigma.
5. This leads to a change in one’s behaviour (e.g., in the form of isolation and withdrawal from socio-cultural aspects of life) that conforms to existing sociocultural stereotypes of that illness – secondary deviance.
6. This withdrawal leads to a deficiency in individual skillset and a subsequent lack of confidence in one’s own abilities, exacerbating the initial social restrictions caused by the illness.

Question 20

What is the theory of biological disruption?

Answer 20

1. Bury’s biographical disruption theory (1997) postulates that chronic illness, over time, causes one to lose their self-identity in a struggle to maintain normality – representing a trajectory over time.
2. With this comes an uncertainty of the nature of pre-existing relationships within familiar environments such as home and work.
3. These relationships are tested due to the support requirements of the illness  the nature of these relationships changes, either positively or negatively
4. In response, an individual is left to renegotiate the meanings they place on these relationships – a process of adaptation and coping.
5. Coping in this context is relative, as the negotiation process will differ between individuals.

Question 21

What does sociological research say about lay beliefs?

Answer 21

Sociological research on lay health perspectives focuses on the socio-cultural meanings that underpin how people comprehend their experience of health and illness.

This research has shown us that individuals do know what affects their health but are restricted by the material means through which they can act on this information.

The two key models of lay beliefs are the health as functional capacity and health as disease candidacy models.

Question 22

What is ‘health as functional capacity’ model?

Answer 22

1. The health as functional capacity model is a conceptualisation of health as an ability to function ‘normally’ within society.
2. This is indicated by: 1) being able to fulfil social and work roles; 2) not taking time off work as a result of disease; and 3) sustaining a positive mindset and being able to cope, despite physical illness.

LECTURE:
This model focuses on the idea of health as the ability to cope with everyday activities.

This is largely a working class conception of health – as reflecting the material realities of life.

Health is defined in the negative, and includes the notion of health as the absence of disease’, as well as the idea of health despite disease’.

But also found in those living with chronic ill health, who were less likely to define health in terms of absence of illness, but rather ‘good enough’ physical and psychological functioning (Wiitavaara et al:2016).

Question 23

What is the ‘health as disease candidacy’ model?

Answer 23

1. The health as disease candidacy model reflects lay explanations of both the relative risk of disease, and the relative efficacy of preventive health behaviours.
2. This model is indicated by: 1) a retrospective assessment of one’s propensity for disease based on characteristics such as physical appearance and behaviours;
3. 2) the idea that the occurrence of disease is attributed to a purpose, beyond conventional logic.

LECTURE:
Utilised by patients as lay explanations of relative risk (candidacy) of disease, and the relative efficacy of compliance with preventive health behaviours.

Beliefs about heart disease risk constructed from appearance of person, or the circumstances surrounding an event i.e the onset of illness.

Can both support and challenge biomedical aetiology

Question 24

Zola’s model of health seeking behaviour

Answer 24

Zola’s model of health seeking behaviour outlines the factors that contribute to one’s decision to seek medical advice:

Perception of symptoms

• > accommodation to symptoms
• > Triggers - Breakdown of accommodation due to:
  1. Inter-personal crisis
  2. Perceived interference with work activities
  3. Perceived interference with social/leisure activities
  4. Sanctioning by others who insist help be sought
  5. Symptoms persist beyond arbitrary time limit set by individual
• > decision to seek help
  1. lay referral system
  2. visit GP
  3. self-medication

Question 25

Indicators of health as functionality

Answer 25

The ability to fulfil social & work roles as main criterion of healthiness.

Never having a days illness’ used as a (positive) moral individual characteristic.

Health as coping, related to this is the idea of health as reserve’, as a cheerful stoicism’, even when physically ill.

Question 26

Indicators of disease candidacy model

Answer 26

Retrospective identification of disease candidates', i.e he was the last person you would expect to have a heart attack!’.

Teleological explanation of illness i.e `there was a purpose or meaning underlying his/her illness.

Question 27

Health beliefs and patient compliance

Answer 27

the research demonstrates the contradictions between the health messages and the health beliefs held by patients based on their own experiences.

It is long established that patient compliance with treatment is built upon an effective relationship of concordance with clinicians. This in large part reflects the willingness of doctors to engage with, and not be dismissive of patient’s own health beliefs about disease risk and causality (Stevenson et al:2000).

Patient concordance being defined as: ‘(t)he consultation process in which doctor and patient agree therapeutic decisions that incorporate their respective views, but now includes patient support in medicine taking as well as prescribing communication’ (NICE:2007).

This is approach can also be described as sensitivity to cultural difference. But on the understanding that here culture can relate as much to social class and generational differences, as to ethnic majority-minority differences.

Question 28

Help-seeking health behaviour

Answer 28

Zola (1973) found that people`s responses to symptoms were contingent upon their cultural values & beliefs concerning health - their perception of what is ‘normal’.

The decision to seek professional medical help was either promoted or delayed by social factors.

The model identifies 5 different types of incident which ‘triggered’ the decision to seek medical care, incidents which threaten people`s notions of normality.

The model emphasises the importance of what is known as the ‘lay referral system’.

Question 29

What study has agreed with Zola’s model?

Answer 29

Zola’s model has been widely cited over many decades now. Subsequent health research studies have reiterated the association between help-seeking and social influence.

To take one more recent example, Sheppard et al (2008) examined help seeking amongst those living with chronic pain due rheumatoid arthritis.

This study reported that participants spoke to friends and family prior to consulting a health professional for chronic pain, noting that it was the encouragement from their family which eventually led them to seeking formal help.

This was particular evident among men where they articulated ‘sanctioning’ as ‘pressure’ from their wives to see the doctor.

While research conducted by Morgan & Thomas (2009) looking at the implications of constructions of time in informing consulting behaviour by parents of children with asthma, provides a trigger additional to Zola’s five.

The parents were found not to share the clinical view about the necessity for attending review appointments. They only sought help when symptoms were manifest.

The lack of attendance at review clinics by the parents and their children was seen as due to the time constraints of work, demands of school, and domestic and caring responsibilities.

Question 30

Help seeking in the information age

Answer 30

Given that Zola first described help-seeking behaviour nearly fifty years ago four decades ago, the question arises as to whether anything has in the so-called ‘information age’? Are such behaviours still recognisable today?

Empirical studies of users experiences of contacting NHS Direct (This was the health advice and information service provided by the NHS from 1998 until replaced in 2014 by the NHS 111 service),and the health advice available via the Internet (e-health) suggest that people still actively seek information from both multiple professional and non-professional sources (Nettleton and Hanlon:2006).

New digital information technologies have extended and enhanced the lay referral system (although not always in ways anticipated).

For example, it has been found that with information sourced from the Internet, people often make a provisional self-diagnosis that could be confirmed by telephone consultation, and so do not ‘have to waste the doctors time’.

This last finding demonstrates that in many ways, certain cultural assumptions and values associated with the sick role continue to prevail.

In research, callers to NHS Direct for example, were found to be concerned to preserve their status as ‘deserving patients’ i.e not to use up resources unnecessarily (Goode et al:2005).