Session 5 - Chronic Illness Flashcards
What are ‘illness narratives’?
“Illness narratives refer to the story-telling and accounting practices that occur in the face of illness”
What are the general factors of the work of chronic illness?
Illness Work Everyday Life Work Emotional Work Biographical Work Identity Work
What is Illness work?
Managing symptoms
E.g. dealing with physical aspects such as eating, bathing or going to the toilet.
There is an interaction between the body and identity.
Bodily changes lead to self conception changes.
What is Everyday work?
Coping and strategic management.
Coping - the cognitive process involved with dealing with illness.
Strategy - actions and processes involved in managing the condition and its impact.
Have to make decisions about the mobilisation of resources and how to balance demands on others and remain independent.
What affect does chronic illness have on ‘the norm’?
Some people try to keep their pre-illness lifestyle intact by disguising or minimising symptoms.
Or you can re-designate new life as normal life - this may involve signalling changes in identity rather than preserving old ones.
What is Emotional Work?
Impact on role - breadwinner, wife, mother may be devastating.
Dependency - feeling of uselessness to self and others
May be especially devastating for young people.
What is Biographical work?
May feel a loss of self. Former self image crumbles away without the development of a new one. Therefore it can be seen as a struggle to live a ‘valued’ life.
Chronic illness threatens the taken-for-granted world e.g. a person imagines going to uni, getting a job e.t.c.
Grief for former life. Biographical shift from a perceived normal trajectory to an abnormal.
What is Identity Work?
Illness can become defining aspect of identity. Different conditions carry different connotations. Affects how people see themselves and how others see them.
What dilemmas can loss of self give rise to?
People scrutinise the reactions of others for signs of discreditation.
Foster dependance on others - however this puts strains on relationships.
Relationship harder to maintain as illness progresses but increasing needs require more intimate contact. (e.g. toilleting)
Inability to ‘do’ leads to loss of social life
What is the difference between discreditable and discrediting stigma?
Discreditable stigma is based on a factor that cannot be seen but if it was found out may be a cause for prejudice. e.g. HIV or mental illness.
Discrediting stigma is a factor that is physically visible or is something well known about a person that sets them apart e.g. physical disability or known suicide attempt.
What is the difference between felt and enacted stigma?
Felt stigma is the fear of enacted stigma, also encompasses a feeling of shame associated with having a condition - selective concealment
Enacted stigma is the real experience of prejudice, discrimination and disadvantage as a consequence of a condition.
What is narrative reconstruction?
The desire to create a sense of coherence, stability and order in the aftermath of biographical disruption E.g. a way of explaining their illness.
What ar some of the positives for self-mamagement?
Coping and condition management skills are developed.
Reduced hospital admissions
Patient centred.
What are some of the negatives for self-management?
Responsibility fro care is placed on very ill patients
Is there real agency and understanding?
There is little evidence of efficiency savings.
What is the medial definition of disability?
Disability is deviation from medical norms
Disadvantages are direct consequence of impairment and disabilities.
Needs medical intervention to cure or help.
What is the social definition of disability?
Problems are product of environment and the failure of the environment to adjust.
Disability is a form of social oppression.
Political action and social change are needed.
What are some of the critiques of the medical model?
There is a lack of recognition of social and psychological factors.
Stereotyping and stigmatising language.
What are some of the critiques of the social model?
Body is left out
Overly draw view of society
Failure to recognise bodily realities and the extent to which these are solvable socially.
Why measure health?
To have an indication of the need for health care
To target resources where they are most needed
To assess the effectiveness of healthcare interventions
To evaluate the quality of health services
To use evaluation of effectiveness to get better value for money.
To monitor patient’s progress.
Name some common measures of health
Mortality
Morbidity
Patient-based outcomes
What are some of the advantages/problems with measuring mortality?
Easily defined
It is not always correctly measured.
Not a very good way of assessing outcomes and quality of care.
What are some of the advantages/problems with measuring morbidity?
Routinely collected e.g. disease registers, hospital episode statistics
Collection not always reelable/accurate
Tells us nothing about patient experiences
Not always easy to use in evaluation.
What are Patient-based outcomes?
Attempt to assess well-being from patients point of view Health related quality of life (HRQoL), health status, functional abilities.
What are some examples of Patient-based outcomes?
Health related quality of life (HRQoL)
Health status
Functional abilities.
Patient Reported Outcome Measures (PROMS)
How can Patient based outcomes be used?
Be used clinically
Be used to assess benefits in relation to cost
Be used in clinical audit
Be used to measure health status of populations
Be used to compare interventions in a clinical trial
Be used as a measure or service quality.
Be used to compare providers
What are some of the challenges in using patient-based outcomes specifically PROMS?
Minimising the time and cost of collection, analysis, and presentation of the data
Achieving high rates of patient participation
Providing appropriate output to different audiences
Avoiding misuse of PROMs
Expanding to other areas - long term conditions, emergency conditions, mental health
What is Health-Related Quality of Life?
Quality of life in clinical medicine represent the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient.
What are the dimensions of HRQoL?
Physical function - mobility, dexterity, physical activity, activities of daily living
Symptoms
Global judgements of health
Psychological well being - Psychological well being - anxiety, depression, coping, positive well-being and adjustment
Social wellbeing - family and intimate relations, social contact, leisure activities, sexual activity
Cognitive functioning - cognition, alertness, memory, confusion, ability to communicate
Personal constructs - stigma, satisfaction with bodily appearance, life satisfaction
Satisfaction with care.
What is a Generic instrument that measures quality of life? And give examples:
Can be used in any population - including healthy people
Generally cover perceptions of overall health
Also questions on social, emotional, physical functioning, pain and self-care
Short Form 36 Item questionnaire - SF-36
EuroQol EQ-5D
What is a Specific instrument that measures quality of life?
Evaluates a series of health dimension specific to a disease, site or dimension.
What are the advantages of using generic instruments to measure quality of life?
Can be used for a broad range of health problems
Can be used if no disease-specific instrument exists
Enable comparisons across treatment groups
Can be used to detect unexpected positive/negative effects of an intervention
Can be used to assess health of populations
What are the disadvantages of using generic instruments to measure quality of life?
Generic nature means they are inherently less detailed
Loss of relevance if too general?
Can be less sensitive to change that occur as a result of an intervention
May be less acceptable to patients.
What are some of the suggested uses for the SF-36?
Measure of general health Population surveys Patient management Resource allocation Audit tool Clinical tool
What is the SF-36?
36 item questionnaire that contains questions on: Physical functioning Social functioning Role functioning both physical and emotional Bodily Pain Vitality General Health Mental Health
What type of data does SF-36 give you?
Get a score for each dimension. However dimensions cannot be added together to form a single score.
What is the EuroQol EQ-5D?
Has 5 Dimensions each with 3 levels for each dimension - No problems, some/moderate problems, extreme problems. The 5 Dimensions are: Mobility Self Care Usual activities Pain/Discomfort Anxiety/Depression
What type of data does the EuroQol EQ-5D give you?
Single measure based 0 to 1 of ‘health rating’
What are the advantages of using specific instruments to measure quality of life?
The content is very relevant
Sensitive to changes
Acceptable to patient
What are the disadvantages of using specific instruments to measure quality of life?
Can’t use them with people who don’t have the disease
Comparison is limited
May not detect unexpected effects.
What are some examples of specific instruments?
Disease: Asthma QoL questionnaire
Site: Oxford Hip Score, Shoulder Disability Questionnaire
Dimension specific: Beck Depression Inventory, McGill Pain Questionnaire.
