SocPop and VLE Flashcards
1
Q
What factors can shape people’s health beliefs?
A
Structural location
Cultural context
Personal biography
Social identify
2
Q
Why are lay beliefs important to you as doctors?
A
Insights into needs of patients: information and support
Influence health seeking behaviour:
How people respond to symptoms, Decisions about consulting, Expectations about treatment, Concordance with treatment plans
3
Q
What is a symptom iceberg?
A
Proportion above water represents those symptoms that are actually presented to a health care proportion 1/3
Portion below water are 2/3 people who do nothing about their symptoms, self medicate, or seek alternative help
4
Q
What are the 3 parts to help seeking behaviour that determines patients decision to consult?
A
Perception of symptoms - severity, frequency, familiarity, duration
Explanation of symptoms - how they make sense of them in context of their lives – linked to beliefs, knowledge and experience
Evaluation of symptoms - costs and benefits of seeking help
5
Q
What are social triggers to seeking medical help?
A
Interference with social and personal relationships
Interference with vocational or physical activity
Sanctioning by others – influence of lay referral system
Temporalising of symptoms - set deadlines when go on for long time
Interpersonal crisis - other things going on simultaneously
6
Q
What are 3 types of health behaviour?
A
Good health behaviours: Sleeping 7-8 hours, regular exercise, healthy eating, eating breakfast every day
Health protective behaviours: Wearing a seatbelt, attending regular check-ups, health screening
Health impairing habits: Smoking, eating a high fat diet, alcohol abuse
7
Q
What is the dual pathway model?
A
Two broad ways in which psychological processes may influence physical health
Direct pathway - eg stress has direct impact on health
Indirect - psychology affects behaviour which in turn can affect health
Eg when stressed, may smoke more or eat more chocolate
8
Q
What is the biopsychosocial model of health?
A
Integrates 3 core areas which interact to influence health
Biology - microbes, genetics
Psychology - Behaviour, Emotions, Beliefs, Coping, Stress
Social - class, employment, ethnicity
9
Q
What are determinants of health behaviour?
A
Background factors: Characteristics that define how people live their lives
Stable factors: Individual differences (personality) in psychological activity that are stable over time and context
Social factors: Social connections in the immediate environment
Situational factors: Appraisal of personal relevance that shape responses in a specific situation
10
Q
How do stable factors affect health behaviour?
A
Individual differences and personality
Sensitivity towards types of event
Understanding and evaluating the event, e.g. as threat or challenge
Suggest, potential responses, i.e. initial response options
11
Q
What are the 3 broad types of individual differences that affect health behaviour?
A
Emotional dispositions: Experience and expression, present
Generalised expectancies: Psychological processes involved in formulating expectations in relation to future outcomes
Explanatory styles: Psychological processes involved in explaining the causes of negative events, past
12
Q
What are the emotional dispositions-five personality traits?
A
OCEAN
Openness to new experiences - Intellect and interest in culture; artistic,
curious, imaginative, wide range of interest
Conscientiousness - The will to achieve; self disciplined, efficient, organised, reliable, thorough
Extroversion - Outgoing; talkative, enthusiastic, seeking excitement, assertive and active
Agreeableness - Loving, friendly and compliant; sympathetic, appreciative, trusting, kind, forgiving, generous
Neuroticism - Experience more negative emotions; anxious, tense, worried, hostile, self-pitying, vulnerable
13
Q
Which personality trait might make a person more likely to engage in positive health behaviours?
A
Conscientiousness
14
Q
Which personality trait might make a person less likely to engage in negative health behaviours?
A
Neuroticism
15
Q
What is a locus of control?
A
Expectations that future outcomes will be determined by factors that are either internal (self) or external (powerful others, and chance)
16
Q
Which locus of control is associated with positive health outcomes?
A
Internal LOC associated with more favourable outcomes and performance of health behaviours, but dependent on situational factors
People with an internal locus of control believe they are responsible for their own health, Illness can be avoided by taking care of themselves, ill health results from not eating correctly or not getting enough exercise
17
Q
What are 2 types of generalised expectancies?
A
Locus of control
Self efficacy
18
Q
What is self efficacy?
A
Belief in one’s own ability to organise and execute a course of action, and the expectation that the action will result in a desired outcome
19
Q
What are 2 types of explanatory styles?
A
Optimism/ Pessimism - Expectation of positive future outcome despite current negative event, Low levels of physiological reactivity in mild and moderate stress, promotes active coping responses
Optimism associated with better physical health, illness recovery, and health behaviour performance
Attributional style - Causal explanations of negative events as internal (self), permanent (time), and global (situation)
Generally better if attributions are specific, rather than internal (guilt),
permanent and global. Causal attributions influence expectations about future outcomes, i.e. the relevance of health behaviours
20
Q
What are the social cognition theories?
A
Health belief model - susceptibility, severity (threat) barriers, benefits (efficacy)
Theory of planned behaviour - Behavioural beliefs, Outcome evaluation, (attitude) Normative beliefs, Motivation to comply (subjective norm) Control beliefs, Self-efficacy (perceived behavioural control)
Stages of change/transtheorectical model - pre contemplation, contemplation, planning, action, maintenance, relapse, stages improve with self efficacy and decrease with temptation
21
Q
What is epidemiology?
A
Study of disease in populations
22
Q
What is a mortality rate?
A
Number of people dying in a defined population in a defined period of time
23
Q
What are 2 concepts of causality?
A
Deterministic Approach - inevitability, Validation of hypothesis by systematic observations to predict with certainty future events. A causes B eg Tubercle bacillus is the cause of tuberculosis. Mechanistic, can take apart to study, Objective, quantifiable, certain, Whole is the sum of the parts, single cause for a single disease
Stochastic Approach - probability, Assessment of hypothesis by systematic observations to give risk of future events. If you have A, probability of getting B is… Eg Tuberculosis is more
common in overcrowded accommodation. Whole greater than sum of
parts, Whole not predictable from knowledge of parts, Probabilities, Systems theory; complexity theory, The observer influences the observed, Emergent phenomena, useful for studying processes of ageing, chronic disease
24
Q
What is a confounding variable?
A
Something that is associated with both the exposure and the outcome
Eg smoking would be a confounding factor in a study of obesity and heart disease
An exposure is independently associated with the outcome after taking confounding factors into account
25
What is a mediating variable?
A mediator is variable through which an exposure wholly or partially exerts its effect
Eg sugar excess leads to obesity which in turn leads to heart disease
Obesity is a mediating variable
26
What is reverse causality?
Unemployment can lead to mental illness
| Mental illness can lead to unemployment
27
Describe Bradford Hill’s Criteria for Inferring Causality
Association factors - Strength of association, Specificity, Consistency
Exposure/outcome - Temporal sequence, Dose response, Reversibility
Other evidence - coherence of theory, biological plausibility, analogy
28
Describe strength of association
A causal link is more likely with strong associations (measured by rate ratio or odds ratio)
e.g. Heavy smokers have 20 times risk of mortality from laryngeal cancer than non-smokers
But weak associations can still be causal, e.g. environmental tobacco smoke and ischaemic heart disease
Strong associations are unlikely to be explained by undetected confounding or bias however, this is not always true, e.g. Popper’s and Kaposis’ sarcoma (OR=8.5) thought causal prior to discovery of HIV
29
Describe specificity of association
A causal link is more likely when a disease is associated with one specific factor and vice-versa
Eg Asbestos causing Mesothelioma
However, lack of specificity does not necessarily weaken the case, e.g. tobacco smoking causing many cancers and diseases
current models of disease causation are multi-factorial
30
Describe consistency of association
A causal link is more likely if the association is observed in different studies and different sub-groups
Consistency of association between studies or groups is unlikely to be due to the same confounding or bias
Lack of consistency can be due to features of study design
Eg: Many different studies demonstrated the association between smoking and ischaemic heart disease
31
Describe temporal sequence in terms of causality
A causal link is more likely if exposure to the putative cause has been shown to precede the outcome
The corollary is that a causal link cannot exist if the outcome preceded exposure to the putative factor
Optimal study designs - RCTs, cohort study
Weak study designs - cross-sectional (prevalence), case-control study
32
Describe dose response in terms of causality
A causal link is more likely if different levels of exposure to the putative factor lead to different risk of acquiring the outcome
Dose response (biological gradient) is unlikely to be due to unknown confounding or bias
lack of a biological gradient does not rule out a causal link, e.g.
threshold effect, J-shaped or U-shaped relationship
33
Describe reversibility in terms of causality
A causal link is very likely if removal or prevention of the putative factor leads to a reduced or non-existent risk of acquiring the outcome
Probably strongest evidence for causal link but difficult to demonstrate
many disease have long time lags, e.g. mesothelioma takes 20-40 years to develop following exposure to asbestos
ethical issues for a RCT of a prevention programme, e.g. smoking cessation. public health programme to remove or prevent an exposure
often requires action by society
34
Describe coherence of theory in terms of causality
A causal link is more likely if the observed association conforms with current knowledge
Coherence with current paradigms/constructs/theories strengthens case for a causal link
however, this leads to inappropriate rejection of ‘unfavoured’
associations, i.e. ‘publication bias’ towards studies that support
favoured theories or demonstrate that drug / interventions work
lack of coherence does not rule out a causal link, e.g. Helicobacter
pylori and peptic ulcers
Example of coherence of theory: The link between socio-economic deprivation and lower life expectancy is now well established
35
Describe biological plausibility in terms of causality
A causal link is more likely if a biologically plausible mechanism is likely or demonstrated
36
Describe analogy in terms of causality
A causal link is more likely if an analogy exists with other diseases, species or settings
An analogy is easier to infer than a biologically plausible mechanism
Eg - The epidemiology of Hepatitis B virus was successfully used to predict how HIV virus would spread
37
What is a cross sectional survey?
Observational study
Investigate distribution of a specific disease in population
Monitoring health over time
Medium cost
Usually max 50% response rate
Information is collected from each subject in the study population at one point in time
To determine the prevalence of something (descriptive)
To investigate possible associations between exposures and a particular outcome (analytic)
38
What is a case control study?
Observation study
Investigate suspected determinants eg Outbreak investigation and determinants of rare conditions
Quick and Cheap
Recall and selection bias an issue
Case control studies involve comparing subjects with a condition (the cases) to subjects without the condition (the controls)
The level of exposure to a factor or factors is determined for both groups and compared. If the prevalence of exposure is higher in cases than in controls then the exposure might be a risk factor
39
What is a cohort study?
May be set up for a specific purpose, more often multipurpose Eg effects of smoking, asbestos
Determinants of common conditions
Relative importance of different factors
(Very) slow and (very) expensive
Issues due to confounding with unknown risk factors
40
What are uncontrolled studies?
Easy to do
Selection bias a problem
Don’t know what happens without intervention
41
What is the hierarchy of evidence?
Systematic reviews
Experimental studies - Randomised Controlled Trials, Controlled trials
Observational studies - Cohort studies, Case control studies
Descriptive studies - Cross sectional
(Qualitative studies)
42
What is bias?
Any trend in the collection, analysis, interpretation, publication of review of data that can lead to conclusions, that are systematically different from the truth
43
What types of bias can be present in epidemiological studies?
Selection - Admission, prevalence/incidence, detection, volunteer, loss to follow up
Information - Interviewer, questionnaire, recall, diagnostic suspicion and exposer
Confounding
44
What are issues with epidemiological studies?
Epidemiological studies provide information on average effects
These averages hide individual level variation
For some patients it will be better not to do what is best on average
If patients have strong preferences for treatments it is likely to be best to support these preferences
45
When are epidemiological studies best?
Single agent causes single disease or single treatment reverses disease
are very good when: Primary factor causes specific disease with
several secondary influences
are more limited when: Many different factors interact with each other in complex pathways to create the conditions in which multiple diseases are likely to arise
46
What are objectives of epidemiological studies?
Investigate disease aetiology - exposure → outcome relationship interested in causal understanding
Identify risk factors or protective effects - quantified in some way, absolute / relative risk (or protective effect)
Evaluate health needs / disease / treatment and prevention strategies
47
What are analytical studies?
Cohort studies
Case control studies
Cross sectional studies
48
Describe the types of epidemiological studies
Descriptive studies - Examine patterns of disease
Analytical studies - Studies of suspected causes of diseases
Experimental studies - Compare treatment modalities
49
What is an ecological study?
Compares an area or population with another
e.g. the amount of alcohol drunk in France and UK and rates of cirrhosis in each country; the amount of saturated fats and rates of CVD across countries (Seven Countries Study)
Easy to do as use available information
Work on whole population data - cannot necessarily apply to
individual person
50
What is ecological fallacy?
Ecological inference - a conclusion about individual behavior drawn from data about aggregate behavior
The "ecological fallacy" consists in thinking that relationships observed for populations hold for individuals: if countries with more Protestants tend to have higher suicide rates, then Protestants must be more likely to commit suicide
51
What are advantages and disadvantages of ecological studies?
Advantages: Relatively cheap and simple to do, May raise hypothesis
Disadvantages: Can’t establish causation - only association, Ecological fallacy, Many of the disadvantages of cross sectional studies – with
less reliable data collection! Confounding
52
What are advantages and disadvantages of cross sectional studies?
Advantages: Relatively cheap and simple to do, Good for examining exposures that do not change over time (e.g. sex), No exposure to harm or denial of beneficial therapy (“ethically safe”), May raise hypothesis
Disadvantages: Can’t establish causation - only association, Cannot measure incidence, Confounding, Recall bias, Response rates
53
Why do we need case-control studies?
Conventional cohort studies take a long time
Cohort studies are expensive – especially if you need detailed information
Cohort studies are not good for studying rare events (disease) because they need to be impossibly large
54
What is the odds ratio?
(Exposed cases / non exposed cases) /
| exposed controls / non exposed controls
55
What is incidence rate ratio?
(Exposed cases / total exposed) /
(Unexposed cases / total unexposed)
Incidence in exposed / incidence in unexposed
56
When is Odds Ratio as a good approximation of theIncidence Rate Ratio in the population?
The disease is not common (“rare disease assumption”)
The cases are representative, with regard to the exposure, of all
people with the disease in the population
The controls are representative, with regard to the exposure, of all people without the disease in the population
57
What is the error factor?
Exp ( 1.96 x root of 1/exposed cases, 1/exposed controls, 1/non exposed cases, 1/non exposed controls)
58
What is the 95% confidence interval for the odds ratio?
(OR / error factor) to (OR x error factor)
59
How do you decide how many controls are required in the study?
Precision of an OR is affected by the number of controls
So, it is worth increasing the number of controls – up to a point, typically up to 4-6 times as many controls as there are cases
60
Describe the difference between Conventional vs. nested case-control studies
Conventional case-control study: retrospective collection of data (from recall)
Nested case-control study: nested within a cohort study, collection of data before disease has developed (from pre-existing records or biological samples)
Advantages over conventional case-control studies: incidence rates can be calculated (sampling fractions known) population for sampling of controls is already defined data obtained before disease has developed, thus recall bias is eliminated
Advantages over conventional cohort studies: can collect more detailed information for a minority of participants, costs dramatically reduced
it is a cost-effective alternative to a full cohort analysis
61
What are advantages and disadvantages of case control studies?
Advantages: relatively quick & cheap, no loss to follow up, Multiple exposures can be examined, Rare diseases and diseases with
long latency can be studied, Suitable when randomisation is unethical (alcohol and pregnancy outcome)
Disadvantages: prone to biases (e.g. recall), problems sorting out sequence of events, not suitable for rare exposures, cannot measure disease incidence, Multiple outcomes cannot be studied
62
What is a cohort study?
A cohort is a group of people who have something in common eg Worked in the same industry, Take the same drug
A cohort study is one in which a group of people are followed up over time
Two groups of people, one group exposed and another unexposed to a potential cause of disease, followed-up over time and the incidence of the disease in one group is compared with the incidence in the other
63
What can cohort studies be used to look at?
Disease Aetiology - What happens to people who have been exposed to an agent or problem? do they die or get ill earlier than other people?
if so, what from? by how much does exposure increase risk, how much exposure is needed
Disease Prognosis: What factors predict survival in people with a disease or health problem? risk and protective factors, benefits of treatment
64
What is relative risk?
Risk in exposed / risk in unexposed
65
Why can IRR not be used in a case control study?
Incidence rate = numerator/denominator
Denominator = number of people in the population
In a case-control study we don’t usually know the denominator
66
What are person years at risk?
Person-years is the sum of the total follow up time of everybody in the study
1,000 people followed up for 1 year = 1,000 person-years (p-y)
1 person followed up for 10 years + 3 people followed up for 2 years +
7 people followed up for 0.5 years = (1 x 10) + (3 x 2) + (7 x 0.5) = 10 + 6 + 3.5 = 19.5 person-years (p-y)
67
What is cumulative incidence?
Number of new incidences/number of disease free people at start of study
68
What are internal and external comparisons?
Internal comparison: Precision of estimate depends on number of
individuals with disease in smallest sub-cohort
External Comparison: Comparing with a reference population, All cohort exposed: so no internal comparison, Data available on external population: usually routinelycollected data, Usually mortality data because data on disease incidence is rarely available
69
What is a standardised mortality ratio?
(Observed number of cases (O) / Expected number of cases (E)) x100
70
How do you calculate expected deaths?
Obtain age-specific rates for each calendar time period from routine data sources, multiply these rates by person-years at risk in that category to estimate the expected number of cases or deaths in
each category
Add together the expected number of cases or deaths over all age groups and for all calendar time periods, to give the total number of expected cases or deaths. Can also add additional classification variables, e.g. age-sex specific rates at each calendar time period,
but you are limited to the variables recorded by routine data sources
71
What are Historical (or retrospective) cohort studies?
Find individuals who have been exposed from historical records, i.e. from the past: recruit disease-free individuals and classify them according to their exposure status using historical records, follow-up, count p-y and events (possibly using historical records)
Study might be in 2010 but recruitment and start of follow-up in 1990
72
Describe differences between Concurrent, historical, retrospective and nested studies?
Concurrent cohort study: prospective data collection (waiting for events to happen)
Historical cohort study: collection of data (from pre-existing records)
Conventional case-control study: retrospective collection of data (from recall)
Nested case-control study: collection of data (from pre-existing records or samples)
73
What are advantages and disadvantages of cohort studies?
Advantages: Can monitor changes over time, May detect (causal) associations and time sequence, Can establish population-based
incidence, Can examine rare exposures (asbestos > lung cancer), Multiple outcomes can be studied, (smoking > lung cancer, COPD,
larynx cancer, CVD)
Disadvantages:Lengthy and expensive, large samples, Not suitable for rare diseases, Not suitable for diseases with long-latency, Non-response, migration and loss-to-follow-up
74
Compare case control and cohort studies
Case-control studies: Compares groups based on disease status, Quicker and relatively cheaper, Not good for rare exposures, Can study a range of exposures for a single outcome or disease, Prone to information (recall) bias, Cannot establish that the exposure precedes the outcome/disease, Cannot measure incidence
Cohort studies: Compares groups based on exposure status, Large and time-consuming and so relatively expensive, Not good for rare diseases, Can study a range of outcomes or diseases for each exposure, Prone to losses to follow-up & selection bias, Can establish that the exposure precedes the outcome/disease, Can directly measure incidence
75
What is attributable risk?
Incidence due to exposure
76
What is population attributable risk?
The incidence of disease in the total population whose disease can be attributed to the exposure
PAR = Ipopulation – Iunexposed = AR x Pexposed
77
What is the number needed to treat?
The cost-effectiveness of an intervention (prevention programme)
NNT = 1 / AR
i.e. number needed to treat in other in order to save one additional person. It is simply and intuitive
Also note number needed to screen
Eg how many people have to take statins for 1 person to avoid heart disease
78
What is chronic illness?
The experience of a long-term condition for which there is currently no
cure, and which is managed with drugs and other treatment
Experienced by people living with a wide range of chronic conditions: diabetes, chronic obstructive pulmonary disease, arthritis, hypertension, some mental health conditions
Often degenerative over time
79
How prevalent is chronic illness?
1/3 people are living with at least 1 chronic condition
80
What are common elements from patients’ illness narratives about chronic illness?
Search for meaning and explanation –why me? Draw on lay beliefs
Uncertainty and unpredictability of the condition e.g. unpredictability of seizures, bowel movements
Dealing with doctors and health care practitioners: different ideas, explanations, treatment plans
Coping, Resilience and adaptation
81
What 4 areas of people's lives may be impacted by chronic illness?
Daily activities
Social relationships
Sense of self
Identity
82
What are the 4 stages of coping?
Denial
Normalisation
Resignation
Accommodation
83
What is an expert patient?
Someone who feels confident and in control of their life
Aims to manage their condition and its treatment in partnership with healthcare professionals
Communicates effectively and is willing to share responsibility for treatment
Realistic about how their condition affects them and their family
Uses their skills and knowledge to lead a full life
84
What is the expert patient programme?
Peer led 6 week self management programme for long term conditions
Aims to improve self-management
Covers topics such as: healthy eating, exercise, pain management, relaxation, action planning and problem solving
Are also some disease specific programmes
85
What are potential problems with the expert patient programme?
Not attractive to everyone - group dynamic etc
Everyone not able to participate
Extra pressure on patient organisations
86
What are benefits of expert patient programmes?
Felt more confident that their symptoms would not interfere with their lives
Felt better prepared for appointments with healthcare professionals
Fewer visits to GP
Fewer visits to Emergency Dept
87
Describe the self regulatory model
Representation of illness - Identity, cause, consequences, timeline, cure/control
Feeds into: interpretation, coping and appraisal
Which feeds into emotional response to illness
88
What are the 5 factors that influence a persons representation of their illness?
Identity, cause, consequences, timeline, cure/control
89
What factors do patients have to do when dealing with a chronic illness?
Adjust to symptoms and disability
Maintain emotional balance
Preserve self-image and sense of competence
Learn about symptoms and treatment and self management
Relationships with friends and family
Form and maintain relationships with health care professionals
Prepare for an uncertain future
90
What are Benefits of a pain management programme?
Helps patients manage their pain rather then the pain managing/controlling them
Learn to change cognitive perceptions of pain, less catastrophising, challenging unhelpful thoughts
Management of stress and anxiety as well as low mood, depression
Not feeling so isolated with the condition when in a group
91
What are challenges of a pain management programme?
Managing group dynamics
Stages of change – are they ready to change their behaviours
Commitment
Managing fears
92
What 3 things are required for a valid consent?
Capacity
Information
Freedom from coercion
93
What does the legal framework say about consent?
Appropriate to the situation
Level of information
Facilitate capacity (pain relief, environment, timing, support)
Proxy consent (if patient lacks capacity)
(MCA 2005)
• Lasting power of attorney (LPA)
• Court appointed deputy
94
What does the legal framework say about treatment without consent?
Doctrine of necessity - Common law. No time to assess capacity/life threatening
Principle of best interests MCA - Patient lacks capacity
Detention under the Mental Health Act - Applies whether or not patient has capacity but very specific conditions
95
What does the legal framework say about restraint?
Restraint must be proportionate and the minimum necessary to achieve the treatment goal
Treatment must be in the patient’s best interests AND to prevent harm
96
What does the legal framework say about best interests checklist (mental capacity act)?
Person making the determination must not make it merely on the basis
of the person's age or appearance, or a condition of his behaviour, which might lead to unjustified assumptions about what is in his best interests
In life sustaining treatment, the decision-maker must not be motivated by a desire to bring about the persons death
The decision maker must consider the person’s past/present wishes, feelings, beliefs and values, take into account the views of those caring for the person and anyone with lasting power of attorney as to what would be in the person’s best interests
97
What is the framework for treating children in the ED?
Doctrine of necessity
Competent child’s consent
Parental consent (best interests)
Shared parental responsibility(for specific/limited situations) e.g teachers
98
What is the framework for parental responsibility for providing consent in the ED for a child?
Mother
Father if married to mother at time of birth
If not married, jointly registered the birth with the mother (1.12.03)
By a parental responsibility agreement with the mother
By a parental responsibility order of the court
99
What is the framework for treating an adult in the ED?
```
Consent from patient - Facilitate capacity, Competent refusal respected, Valid Advance refusal respected, Remember proxy consent (rare)
Doctrine of necessity
Best interests
Remember checklist
Mental Health Act (specific conditions)
```
100
What are other important ethical/legal issues in the ED apart from consent for treatment?
Disclosure of information - To family, police, social services
Organ donation
Donation after cardiac death
Fair allocation of resources
101
What are the 4 factors determining if a person has capacity?
Ability to understand, retain, weigh and communicate the information and their decision
102
What are the 3 factors determining whether someone can give a valid consent?
Information
Capacity
Freedom from coercion
103
What different types of caring exist?
Paid, unpaid
Private, public
Non contractual, contractual
104
What are unpaid carers?
Provide unpaid care by looking after an ill, frail or disabled family member, friend or partner
105
How many people in the UK provide some sort of care?
1:10
106
What ethnical differences exist in care?
Smaller proportion of Black and minority ethnic population provide care compared to White UK population: Younger population
Black and minority ethnic group carers are less likely to be receiving support: Financial and practical support, Culturally appropriate services
107
Which disability/disease states receive the most care?
13% - mental health condition
10% - dementia
58% - physical disability
14% - older age group
108
Who receives care?
```
33% parents
26% spouse
13% child
9% friend or neighbour
7% parent in law
7% other relative
4% grandparent
```
109
What sorts of things do carers do?
```
Practical help
Keep an eye on someone
Provide company
Taking person out
Paperwork and finance
Deal with care services and benefits
Personal care
Physical help
Giving medication
```
110
What are possible advantages of using the term carer?
May identify need and open up the way to providing services
May give recognition to the demands made upon carers and the contribution they make
May offer some carers a sense of identity – more likely to attend support groups etc.
111
What are possible disadvantages of using the term carer?
May lead others to see that person only in terms of that definition and its associated responsibilities
May lock some people into a role they do not want
Some may dislike or reject the ‘carer’ tag, preferring to define themselves as a son, daughter, mother, etc
Person being cared for may feel undermined if someone close is primarily defined as their ‘carer’
112
What 5 areas may be impacted by caring?
```
Financial
Work
Relationships and social exclusion
Health
Education (particularly young carers)
```
113
What impact might caring have on finance and work?
May have lower incomes as reduces ability to work: half of working carers reduced their working hours, 1/3 didn’t take promotions or took less qualified jobs
Often have higher costs: additional laundry, higher heating bills
Carers UK (2014): Half struggling to pay household bills or make ends meet, One third cutting back on essentials
114
What impact may caring have on social exclusion?
Difficulty accesing holidays, leisure pursuits and social activities
¾ carers said it was hard to maintain relationships and social networks
Many carers get few or no breaks from their caring responsibilities - look after individuals who do not receive any regular visits from health or welfare professionals
Individuals cared for by relatives less likely to receive services
Black and minority ethnic carers less likely to receive practical support
115
What impact may caring have on health?
Carers may have poorer mental and physical health than non-carers
Caring for a child with LLTI/disability increases risk of parent developing LLTI/disability
Injuries due to manual handing
Unable to find time for own health check-ups or do things to improve own health
May be reluctant to accept certain treatments if it interferes with caring
May discharge themselves early from hospital
116
What support is available for carers?
Financial support: Carer’s Allowance if caring for at least 35 hours a week for someone on a qualifying disability benefit and not earning
more than £100 per week
Carer’s Assessment: have right to assessment of their needs
Carers’ organisations and support groups
117
What impact can caring have on young carers?
```
Absence from school
Lower educational attainment
Behavioural problems/bullying
Social exclusion/isolation
Stress
Physical health problems
Traumatic life changes
Poverty
Lack support and benefits
```
118
What young carers programs are available?
Provide opportunities for young carers to take a break from caring responsibilities, spend time with other young carers and share
experiences
Support young carers to use local services such as sports clubs,
support groups, and health centres
Provide advice and emotional support through counselling and drop-in sessions
Liaising with schools so that teachers can better support their students
Provide opportunities for young carers to learn more about their
parent’s illness or disability
Help the family to find the support they need, and are entitled to, from local services, so that a child’s caring responsibilities can be reduced
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How can we improve the health and wellbeing of carers?
Given early information about rights and entitlements
Provision of support and equipment quickly and in a timely fashion
Carers need to be consulted about decisions
Flexible employment policies
Signposting carers to services: Carers Assessment, Carers Allowance, Social Services, support groups
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What are the objectives when giving a patient information?
To gauge the correct amount and type of information
To provide explanations that the patient can remember and understand
To use an interactive approach to ensure a shared understanding
To involve the patient and plan collaboratively to the level that the patient wishes
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How can you negotiate a mutual plan of action with a patient?
Discuss options
Provide information on action or treatment offered
Obtain patient’s view of need for action, perceived benefits, barriers, motivation
Accept patients views, advocate alternative viewpoint as necessary
Elicit patient’s reactions and concerns
Take patient’s lifestyle, beliefs, cultural background and abilities into consideration
Encourage patient to be involved in implementing plans, to take responsibility and be self-reliant
Ask about patient support systems, discuss other support available
122
In promotion of behaviour change, what domains need to be considered?
Cognitive level: information
Attitude: beliefs, intentions, readiness for change
Instrumental level: skills
Planning and coping level: Assess coping skills, plan reminders, coping behaviour, coping skills
Social level: Social support
123
What are SMART goals?
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Specific
Measurable
Attainable
Relevant
Time related
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124
What ethical frameworks underpin data protection?
Respect for autonomy: Self determination includes determining how
information about oneself is used
Nature of the patient/doctor relationship: Implied promise, trustworthiness as a virtue, Duty of care
Consequentialist arguments: Balancing harms and benefits, Impact on individual patient, Impact on wider population, Impact on specific others (harm of non disclosure)
125
What legal framework underpins data protection?
Statutory obligation to protect information
Statutory obligation to disclose information in some circumstances
There is a public interest in maintaining patient confidentiality that must be weighed against any public interest argument for breaching it
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What is the GMC Guidance on exceptions to the general duty of confidentiality?
When disclosure is required by law
When patients consent: implicitly for directly providing and supporting their care, e.g. sharing information with other members of the care team, local clinical audit, explicitly for secondary purposes, e.g. research, insurance or benefits claims
When the benefits to an individual or society outweigh both the public and the patient’s interest in keeping the information confidential
127
What steps have to be taken for notifiable diseases?
Hospital infection control: usually via duty microbiologist
Public Health England: Diagnosing clinician’s duty to report the case to the local health protection team, Form, Notify urgent cases by phone
128
Which legislation underpins notifiable diseases?
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Public Health (Infectious Diseases) Act (1988)
Public Health (Control of Diseases) Act (1984)
Public Health England regulations: Health Protection Regulations (2010)
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129
Name some examples of notifiable diseases
encephalitis, hepatitis, meningitis, poliomyelitis, Anthrax, Botulism, Cholera, Diphtheria, Enteric fever, Food poisoning, Infectious bloody
diarrhoea, streptococcal disease, Legionnaires’ Disease, Leprosy, Malaria, Measles, Meningococcal septicaemia, Mumps, Plague, Rabies, Rubella, SARS, Scarlet fever, Smallpox, Tetanus, Tuberculosis, Typhus, Viral haemorrhagic fever, Whooping cough, Yellow fever
130
What is Information Governance?
Framework within which the NHS handles information about patients and employees; in particular personal and sensitive information
131
What counts as Identifiable patient information?
Written, computerised, visually or audio recorded or held in the memory of health professional
Clinical information, e.g. diagnosis or treatment
Picture, photograph, video, audiotape or other images of patient
Patient’s doctor /clinic attendances
Anything else that identifies a patient so that any of the prior information, combined with the patient’s name, address, postcode or date of birth can identify them
Extra care: rare diseases, drug treatments or statistical analyses with small numbers
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What does GMC guidance say about the appropriate process of patient information disclosure?
Anonymised or coded information if practicable
Be satisfied that the patient: has access to info that explains that personal information might be disclosed for the sake of their own care, or for local clinical audit, they can object, and has not objected
Get expressed consent if identifiable information is to be disclosed for purposes other than their care or local clinical audit, unless the disclosure is required by law or can be justified in the public interest
Keep disclosures to the minimum necessary
Keep up to date with relevant legal requirements, including common law and data protection legislation
133
What is the Data Protection Act 1998?
Relates to:
Processing of personal data of a living individual
Processing – holding / obtaining / disclosing information
Data processed ‘fairly and lawfully’
134
What are the DPA: Eight key principles?
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Be fairly and lawfully processed
Be processed for limited purpose
Be adequate, relevant and not excessive
Be accurate and up-to-date
Be kept secure
Not be kept longer than necessary
Be processed in accordance with the rights of the data subject
Not be transferred to other countries outside the European Economic Community
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135
What does the DPA 1998 say about Rights of the data subject?
To challenge accuracy of information held
To refuse permission for information to be processed for other reasons (e.g. for research)
Exceptions apply, e.g. by Court order, under statutory laws making such processing defensible
To have factual errors corrected
To claim compensation if the Act has been breached
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What does the DPA 1998 say about medical information?
Processing of medical information is governed by Schedule 3
Generally requires consent
Exceptions occur where processing is necessary to protect vital interests of the patient or another person, and consent cannot be obtained or has been unreasonably withheld
Use of patient data for research without consent must be approved by the Confidentiality Advisory Group of the Health Research Authority
137
What are Caldicott Guardians?
Senior people in NHS, local authority social care, and partner organisations, who are responsible for protecting the confidentiality of patient information and enabling appropriate information sharing
138
What are the Six Caldicott Principles?
Justify the purposeof every proposed use or transfer
Do not use it unless absolutely necessary
Use the minimum necessary
Access should be on a strict need-to-know basis
Everyone with access to it should be aware of their responsibilities
Understand and comply with the law
139
What Access to Health Records is available?
The Data Protection Act 1998: allows access to health records for all living individuals, NHS Trusts have 40 days to respond to request
Access to Health Records Act 1990: allows access to health records of deceased people
Access to Medical Reports Act 1988: Restricted right of access to any medical report provided by a medical practitioner for employment or insurance purposes
140
Who can access health records?
Patient for their own health records (if over 16 years)
Person with parental responsibility (if patient under 16 years)
Power of Attorney if patient mentally incapacitated
Executor of Will/dependants for deceased patients’ records
Independant Mental Health Advocates
Independant Mental Capacity Advocates
Police - by Court Order
Solicitors - with consent
141
What are Limits to access to health records?
No access: When access likely to cause serious harm to the physical or mental health or condition of the data subject or any other person. When the data would reveal the identity of another person
Does not apply to health professionals involved in the care of the
data subject (unless disclosure would cause them serious harm)
142
What are the rules of Reporting concerns to the DVLA?
DVLA legally responsible for deciding if a person is medically unfit to drive. This means they need to know if a driving licence holder has a condition or is undergoing treatment that may now, or in the future, affect their safety as a driver
The driver is legally responsible for informing the DVLA however, you should explain to the patient that the condition may affect their ability to drive (if the patient is incapable of understanding this advice, for example, because of dementia, you should inform the DVLA)
If a patient refuses to accept the diagnosis, or the effect of the condition on their ability to drive, you can suggest that they seek a second opinion, and help arrange for them to do so. You should advise the patient not to drive in the meantime
If a patient continues to drive when they may not be fit to do so, you should make every reasonable effort to persuade them to stop. As long as the patient agrees, you may discuss your concerns with their relatives, friends or carers
143
What is a clinical trial?
Any form of planned experiment which involves patients and is designed to elucidate the most appropriate method of treatment of future patients with a given medical condition
144
What are observational studies?
Patients receive normal medical care
Patient outcomes are observed, relationships to risk factors are assessed
e.g. cohort study, case-control study
145
What are interventional studies?
Effect of clinical intervention is assessed
Patients receive treatments in a designed experiment
e.g. clinical trial
146
What is the purpose of a clinical trial?
To evaluate a new treatment
Scientifically: unbiased evaluation, controlled comparison
Safely: ethical considerations
147
What are Historical controls?
All patients in trial receive new treatment
Comparison with patients who previously received the standard treatment
Is this a fair comparison?
148
What are problems with historical controls?
The historical control group may be less well defined in selection criteria, differ in prognosis or standard treatment, have poor information on potential confounders
The new treatment group may be subject to selection bias – by patient, clinician, investigator, reporting bias
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What are problems with non randomised trials?
Selection bias – patients may be selected to receive new treatment according to prognosis
Reporting bias – evaluation of patients may differ between groups
Confounding – groups may differ systematically other than in treatment given
150
What advantages do we gain from random allocation in trials?
Gives equal chance of receiving each treatment
In long run leads to groups that are likely to be similar in characteristics by chance
Reduces selection bias if patients enter trial before randomisation
Is used in other experimental settings
151
What is the placebo effect?
Even if the therapy is irrelevant to the patient’s condition, the patient’s attitude to his or her illness, and indeed the illness itself, may be improved by a feeling that something is being done about it
152
What is an issue with Comparing with a no treatment group in a trial?
Placebo effect in group receiving treatment. Results may not actually be due to the drug
153
What is single and double blinding?
Single blind – one of patient, clinician, assessor does not know the treatment allocation - usually patient
Double blind – two or more of patient, clinician, assessor does not know the treatment allocation (usually patient + clinician/assessor)
Aims to remove differential placebo effect that could bias comparison between treatments
154
What process happens during a clinical trial?
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Eligible patient presents
Consents
Randomised
Treatment and control groups
Assessment
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155
What evaluation of outcomes might be looked at in a clinical trial?
Is there a difference between the groups?
Could the difference have arisen by chance, is it statistically significant?
How big is the difference, is it clinically important?
Is the difference attributable to the treatments in the trial?
156
What is Non-Compliance?
Not every participant remains in the trial:
their clinical condition may necessitate their removal from the trial
they may choose to withdraw from the trial
Not every participant complies with their allocated treatment:
they may have misunderstood the instructions
they may not like taking their treatment
they may think their treatment is not working
157
How might you determine if the ‘new treatment’ is better than the ‘standard’ in a clinical trial?
Is the physiological action of the new treatment better than the standard treatment?
Is the new treatment better than the standard treatment in routine clinical practice?
158
What is an Explanatory Trial: As-Treated’ Analysis?
Analyses only those who completed follow-up and complied with treatments
Compares the physiological effects of the treatments
But loses effects of randomisation
Non-compliers are likely to be systematically different from compliers selection bias and confounding
159
What is a Pragmatic trial: Intention-to-treat’ analysis?
‘Intention-to-Treat’ analyses tend to give smaller effect sizes and reflect effect in clinical practice
Definitive clinical trials should normally be analysed on an ‘Intention-to-Treat’ basis
Compares all patients given placebo and treatment, including those who did not complete the trial
160
What is Clinical Equipoise?
reasonable uncertainty about which treatment (including non-treatment) is better
Randomisation does not deny any patient the best treatment
Means that a clinical trial does not go against ethical principles
161
What Informed Consent is required in clinical trials?
It should be explained: that the patient is invited to be in a trial, what the alternative treatments are (including known side effects), that treatment will be allocated at random, that patients may withdraw at any time
Information should be given: verbally and in writing with ‘cooling off’ time by a knowledgeable informant
162
What are lay health beliefs?
Perspectives of ordinary people, distinguishable from theoretical or professional perspectives
How non-expert people understand and experience health
People draw on a range of knowledge and experience
People hold complex and sophisticated beliefs about causation of disease and health maintenance
