Experience of chronic disease

Question 1

Explain the social aspect of chronic illness

Answer 1

there is not just a biological aspect but a social one

it is not only embodied but fits its a social lens (sick role)

there are differences in chronic illness regardless of biology:

• the actions someone decides to make
• some cultures put an emphasis on different aspects/ diseases
• their serach for and use of resources to get help- do they have a formalised healthcare system?

Question 2

2 differences between acute and chornic illness

Answer 2

people have to live their everyday lives DESPITE illness

strategies used in adaptation (avoid public embarassment, who to tell about it, making sense of your illness)

Question 3

examples of chronic illnesses

Answer 3

diabetes

IBD

HIV

depression

cancer

Question 4

illness narrative

Answer 4

story that patients tell to give coherence to the distinct events and long course of suffering

Question 5

key problems of long tem conditions

Answer 5

• chronic
• lack of cure- has to be controlled by medication and other treatments
• multi-morbidity
• uncertainty- obtaining a diagnosis: when and how illness will progress
• brings about changes in daily life
• managing and demanding regimen (treatment)
• stigma

Question 6

importance of having a diagnosis

Answer 6

adds legitimacy to a condition:

• increases access to treatment and care
• how others react towards you
• your own identity and self perception

Question 7

what is diagnostic limbo and problems attached

Answer 7

not knowing what conidtion uou have

pathway to diagnosis may take a long time

Question 8

What is a contested condition

Answer 8

medically suspect because symptoms are not associated with any known physical abnormality

Question 9

Adaptation and management after diagnosis

Answer 9

• still short and long term uncertainties, demands and implications
• find a way to manage the unpredictable nature of symptoms (e.g., cant plan day)
• unpredictable nature of disease progression
• stigmatising and embarrassing symptoms e.g., colostomy, epilepsy
• demanding, complex and stigmatising treatment

Question 10

Discontinuities and change in lifetyle, physical appearance, social roles and relationships

Answer 10

• changed physical appearance
• loss or change in important roles
• social isolation
• family impact
• personal goal and developemnt (reduced career prospects, unemployment)

Question 11

chronic illness as a biographical disruption

Answer 11

• disruption, destabilisation, questioning and reorganissation of identity after the onset of chronic illness
• • need to negotiate the present while the past starts to geel like a strange place
• • future looks doubtful

Question 12

Chronic illness impact on identity and self

Answer 12

leads to changes in the way an individual understands and thinks of themselves and their position in society

Question 13

narrative reconstruction

Answer 13

Faced with a chronic illness, people undergo a process of narrative reconstruction (the routine in which we make sense of events in our life).

Can be a means of coping with the disruption that chronic illness may bring.

Question 14

Is chronic illness always disruptive?

Answer 14

no

This view is less useful when people are born with or developed a condition at a young age.

Age, experiences and life context shape illness meaning and experience.

People expect to develop chronic conditions in old age

Presence and history of other LTCs

Knowledge of the specific disease

Question 15

Link between stigma and chronic illness

Answer 15

stigma is extremely discrediting

certqin conditions have special cultural and social meanings which they acquire through social interactions

stigma does not reflect somethiung instrinsic to the stigmatised individual but refelcts the values of those who stigamtise them

Question 16

types of stigma

Answer 16

1. discrediting
2. master status
3. discreditable

Question 17

discrediting stigma

Answer 17

visible or known stigma e.g., facial disfigurement, being oni a wheel chair

Question 18

Master status

Answer 18

any status (i.e. position, role or attribute) that overshadows all othert persons in social situations.

can have a positive (being a doctor) or negative effect (chronically ill)

when a person’s worth is tied to a characteristic (e.g., chornic illness)

schizophrenic person rather than someone with schizophrenia)

Question 19

discreditable stigma

Answer 19

Differentness is not immediately apparent  e.g., being HIV positive

Can be managed or hidden to avoid discrediting the person’s identity

Can become discrediting stigma if people find out

Living under the constant threat of exposure can be very stressful

Question 20

felt vs enacted stigma

Answer 20

enacted- external or actual stigma, first-hand experience of unfair treatment by others

felt- Internal or self-stigmatisation; fear an individual may have that they and their condition would be negatively viewed  someone with an STI visiting a GUM clinic. May cause more harm that enacted.

Question 21

strategies to manage stigma

Answer 21

1. Passing a person may attempt to pass as ‘normal’ (applies to discrediting stigma)
2. Covering  with discrediting stigmas a person may attempt to cover or play down the condition
3. Withdrawal  may withdraw into stigmatized group, cutting yourself from previous external life

Question 22

wHY ARE some conditions stigmatised (3)

Answer 22

• If the condition is perceived to be the bearer’s responsibility (e.g., obesity, lung cancer, alcoholism)
• Condition perceived as contagious (HIV/AIDS) or to place others in danger (e.g., schizophrenia)
• Condition is readily apparent to others and is perceived as repellent, ugly or upsetting (e.g., epilepsy, Parkinson’s)

Question 23

practical implications of stigma

Answer 23

• Seek advice and treatment dear to be ridiculed, mistreated, stigmatised or blamed
• Access to treatment patients refused treatment and symptoms not acknowledged if not found to be linked to a biomedical disease (contested illnesses)
• Over-use of contested illness diagnosis  to appease patients who need diagnosis but whose symptoms don’t link to disease
• Funding for stigmatised or contested conditions
• Access to disability benefits
• Understanding of illness behaviours
• Shaping policy and practice for LTC management to better reflect the social nature of illness e.g., favouring social-psychological solutions over biomedical

Question 24

summary of salient points

Answer 24

• the body is not simply a biological entity only understood by the natural sciences
• people who are chronically ill only spend a small proportion of their time as a patient
• perceptions of the body, what we do w our bodies and how the body is regulated are all influenced by society
• chronic illness leads to ‘beiographical disruption’ where the ‘taken-for-granted’ aspects of life and identity are thrown into question
• common themes in chornic illness experience: uncertainty, stigma, biographical reqorking, managing regimens, communication and support, family relationships

Question 25

revision questions

Answer 25

discuss 2 key problems associated with living with a chronic illness

describe two types of stigma and discuss what impact these may have on experince of chronic illness

explain why certain conditions are stigmatised

discuss how chronic illness can impact on a persons sense of self identity