Living with Chronic Disease and Disability

Question 1

What are the pros and cons of the new NHS Long Term Plan (2019) insofar as it relates to managing chronic illness?

Answer 1

Pros

Targets measurable improvements in health outcome

Focus on consequences not just causes

Cons

Failure to include multi-morbidity in their health targets

No priority to join up social and health care (means tested, but still vastly unequal and difficult to access state support)

Question 2

How much can you remember about the 2015 NHS LTC infographic?

Age

Carers

Death

Multimorbidity

Care Plan

Likelihood of accessing health services

Smoking

Employment

Answer 2

Question 3

What are the quality of life scores for those living with different LTCs? (GPPS:2017)

Answer 3

Question 4

What are the three main ways in which socially disadvantaged people are more likely to suffer hardship as a result of their LTC?

Answer 4

• Financial
• Domestic
• Work-related

Financial direct costs incurred (because social care in England is means-tested):

• Home alterations
• Meeting special dietary requirements
• Additional heating costs
• Restricted mobility costs (e.g. taxis)
• Home help etc.

Question 5

Outline the Crisis Approach to the study of chronic illness:

Answer 5

• 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’.

Question 6

What is the difference between Primary and Secondary Deviance? And how does it relate to Labelling theory?

Answer 6

Primary

• Labelling theory recognises illness as a deviation (or primary deviance) from the social ‘norm’ of healthiness.

Secondary

• A characteristic (conforming to the cultural stereotypes of that condition) behaviour-change often follows diagnosis - termed secondary deviance.
• Serves to alter a person’s self-regard and hence degree of social participation.

Question 7

What is the difference between Disease Labels and Stigma?

Answer 7

Disease Labels

Doctors are given the role and responsibility of applying disease labels to categorise an individual’s signs and symptoms.

However, labels are not simply diagnostic categories, but 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.

• e.g. HIV/Aids, Liver Disease, STD, Mental Illness

Secondary deviance of the sufferer often follows. Disease labels thus constitute a self-fulfilling prophecy, having the power to ‘spoil the sufferer’s identity‘ both personal and social.

Stigmatisation

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.

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

Can include:

• Isolation/Gradual withdrawal from everyday social life.
• Gradual loss of confidence in communicating and interaction with others
• Restriction of social roles

Question 8

Draw the model of

Negative feedback between stigmatisation, self-esteem & participation in social activities (Taylor & Field:1993)

Answer 8

Question 9

Name 3 different types of stigma:

Answer 9

Enacted Stigma

• The social stigma that results from the attaching of a disease label - societal reaction which may produce actual discriminatory experiences

Felt Stigma

• An ‘imagined’ social reaction or internalised sense of blame regarding the health condition, which can drastically change a person’s self-identity

Courtesy Stigma/Stigma by Association

• Spreads out from the individual concerned to ‘infect’ others who are close to them i.e families, parents, etc

Question 10

Describe the model of Biographical Disruption (Bury:1997)

Answer 10

Represents experience of living with LTC as representing a potential loss of ‘self’ in a struggle to maintain ‘normality’.

Conceived of as a ‘trajectory’ over time - a temporal conception of the changes wrought in everyday life as a consequence of the LTC’s social/physical effects

Livings with LTC involves testing social structures both at home and at work; pre-existing social and familial relationships do not guarantee positive responses.

The increased support required, can change the meaning of social relationships, 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’).

Question 11

What is the difference between the relativistic and normative sense of ‘coping’?

Answer 11

Relativistic

Each individual’s personal adaptations to living with a chronic condition. (e.g. used in Biographical Disruption model)

Normative

Either a ‘successful’ or ‘unsuccessful’ response to physical impairment (clinical context)

Question 12

How can the biological and social said to be linked in absence of a specific LTC?

Answer 12

1. Body Image: The body is frequently central to an individual’s self-conception (in terms of both positive and negative connotations).
2. Biological facts become social facts because others often continue to respond to individuals in terms of their physicality.
3. Changes in self-conceptions are often directly reciprocal to changes in bodily experiences.