What is Chronic Illness?
- Encompasses wide range of conditions - long term, has profound influence on lives of sufferers, often co-morbid conditions
- Manifestations may vary greatly day-to-day
- Controlled but not cured
- LTCs will increase with ageing population but it is not only older people who live with LTCs
- People with long term conditions account for 50% of all GP appointments, 64% of outpatient appointments, 70% of all inpatient bed days. Around 70% of the total health and care spend in England is attributed to caring for people with LTCs.
- Medical treatment is limited - many conditions can only be managed, not cured. Inevitably, social and psychological factors are brought to the fore.
Why study Chronic Illness? How is a sociological approach distinct from what you already know?
If you're going to care effectively, you need to understand their experiences.
What you already know:
- Coping styles, and how patients can be helped to cope with illness
- Emotional responses to chronic illness e.g. anxiety, depression
- Possible effect of distress on health outcomes (symbiotic relationship)
How a sociological approach is distinct
- Focuses on how chronic illness impacts on social interaction and role performance
- Modern theory derived mostly from studies in the interactionist tradition
- Concerned with experiences and meanings of chronic illness - a 'negotiated reality'
- Interested in how people manage and negotiate chronic illness in everyday life, not only in treatment.
What is meant by Illness Narratives?
- Illness narratives refer to the story-telling and accounting practices that occur in the face of illness.
- Much sociological research on chronic illness is based on people's narratives of their illness (but not always)
- These narratives offer a way of making sense and they perform certain functions.
- Qualitative research
What are types of work of Chronic Illness?
Everyday Life Work
Explain about Illness Work
- Managing the Symptoms and the input they have on you on a day to day level
- Central to the coping task is dealing with the physical manifestations of illness including treatment, lifestyle modifications
- This has to be done before coping with social relationships e.g. eating, bathing or going to the toilet are most important.
- Interaction between the body and identity
- Bodily changes (e.g. weight gain) => self-conception changes
Explain about Everyday Life Work
- Coping and strategic management
- Coping - the cognitive processes involved in dealing with illness
- Strategy - actions and processes invovled in managing the condition and its impact. This includes decisions about mobilisation of resources and how to balance demands on others and remain independent. What help are you going to draw on? If you decide to have carers, how will they be funded?
- Normalisation: you can either try to keep your pre-illness lifestyle and identity intact (e.g. by disguising or minimising symptoms) or redesignate your new life as "normal life" (around your new limitations) - this may involve people signalling changes in identity rather than preserving old ones.
Explain about Emotional Work
- Work that people do to protect the emotional well-being of others.
- Maintaining normal activities becomes deliberately conscious
- People find friendships disrupted and may strategically withdraw or restrict their social terrain
- May involve downplaying pain or other symptoms (trying to deal with it themselves).
- Presenting "cheery self" - they might present this way to healthcare professionals as well as family and friends so you need to be aware of this.
- Think about Impact on role (breadwinner, mwide, mother, etc) may be devastating e.g. if you can't work anymore or look after your children.
- Dependency - feeling of uselessness to self and others
- May be especially devastating for young people, if they are at the age they would expect to become more independent e.g. not being able to move out etc
Explain about Biographical Work
- Loss of self
- Former self-image (e.g. having children) crumbles away without simultaneous development of equally valued new ones. Constant struggle to lead valued lives and maintain positive definitions of self. Argued that focus on physical discomfort minimised broader significance of suffering for people with chronic illness.
- Interaction between body and identity
- Biographical Disruption: chronic illness as a major disruptive experience - threatens sense of taken-for-granted world. New consciousness of the body and fragility of life, grief for a former life. Biographical shift from a perceived normal tracjectory to an abnormal.
Explain about Identity Work
- Different conditions carry different connotations
- Affects how people see themselves and how others (society) see them
- Consequence of actual and imagined reaction of others
- Illness can become the defining aspect of identity.
- 'Loss of self' gives rise to 4 dilemmas
- Scrutinise reactions of others for signs of discreditation
- Foster dependence on others (but this strains relationships)
- Relationships harder to maintain as illness progresses but increasing needs require more intimate contact
- Inability to 'do' leads to loss of social life
What is meant by Stigma?
- Control of the body means we present ourselves in socially valued ways.
- Stigma is a negatively defined condition, attribute, trait or behaviour conferring "deviant" status
- Discreditable and Discrediting Stigma
- Felt vs enacted stigma
Explain about Discreditable, Discredited, Enacted and Felt Stigma
- Discreditable: nothing seen but if found out....e.g Mental Illness/HIVe +ve
- Discredited: physically visible characteristic or well-known stigma which sets them apart. E.g. physical disability, known suicide attempt.
Some conditions are both e.g. epiplepsy
- Enacted stigma: the real experience of prejudice, discrimination and disadvantage (as the consequence of a condition)
- Felt stigma: fear of enacted stigma, also encompasses a feeling of shame (associated with having a condition) - selective concealment.
What is meant by Narrative Reconstruction?
- Process by which the shattered self is reconstructed in ways that explain the appearance of illness "an attempt to reconstitute and repair ruptures between body, self and world by linking up and interpreting different aspects of biography in order to realign present and past and self with society"
- Desire to create sense of coherence, stability and order in the aftermath of biographical destruction
Describe self-management interventions
- Optimum self-management is difficult to achieve - poor rates of adherence to treatment, reduced quality of life, poor psychological wellbeing
- Brief interventions to improve self-management - delivered online/in-person/via telephone, vary in quality/effectiveness
- DESMOND (Diabetes Education and Self Manageemnt for Ongoing and Newly Diagnosed)
- The expert patient programme is peer-led
- Self-management at a distance: telehealth or telemedicine - mixed evidence of effectiveness.
Describe chronic illness and disability. What is meant by the medical and social models?
Evidence shows that most chronic disorders are disabling in their effects. Relationship between chronic illness and disability is a complex and disputed issue.
- Disability as a deviation from medical norms
- Disadvantages are direct consequence of impairment and disabilities
- Needs medical intervention to cure or help
- Problems are product of environment and failure of environment to adjust
- Disability is a form of social oppression (society as a whole is being unfair to them)
- Political action and social change needed
- Environment is disabling people - people are not inherently disabled
Explain more about disabling environments
Disability is a function of society which fails to take account of people with impairments
- 'Special needs' only special in a particular context e.g. dyslexia no disadvantage except when society places emphasis on literary skills.
Describe the critique of the Medical and Social Models
- Lack of recognition of social and psychological factors
- Stereotyping and stigmatizing language
- Body is left out
- Overly drawn view of society
- Failure to recognise bodily realities and the extent to which these are solvable socially.
Describe the ICIDH
International Classification of Impairements, Disabilities or Handicaps - attempted to classify consequences of disease
Offered 3 concepts
- Impairment: concerned with abnormalities in the structure or functioning of body
- Disability: concerned with performance of activities
- Handicap: concerned with broader social and psychological consequences of living with impairment and disability
Problems with ICIDH: has been widely used but has been subject to criticism
- Problematic use of the term 'handicap' - has been used pejoratively and is now generally avoided.
- Implies problems are intrinsic or inevitable
- Embodied many features of the medical model?
Describe the ICF
International Classification of Functions, Disability and Health is WHO's framework for measuring health and disability at both individual and population levels.
- Endorsed on 22 May 2001 for use as the international standard to describe and measure health and disability.
- Attempts to integrate medical and social models, and recognise significance of wider environment
Key components are:
- Body structures and functions, and impairments of/to
- Activities undertaken by individual, and difficulties/limitations experienced in doing them
- Participation or invovlement in life situations, which may become restricted
All components, and relationships between them, affected by personal and environmental contextual factors (ICF recognises its very complex)
Why measure health? What are commonly used measures of health?
- To have an indication of the need for healthcare
- To target resources where they are most needed
- To assess the effectiveness of health interventions
- To evaluate the quality of health services
- To use evaluations of effectiveness to get better value for money
- To monitor patients' progress
Commonly used measures of health
- Patient-based outcomes
Describe measuring Mortality and Morbidity
- Easily defined but not always recorded accurately
- Not a very good way of assessing outcomes and quality of care
- Routinely collected e.g. disease registers, hospital episode statistics
- Collection not always reliable/accurate
- Tells us nothing about patients' experiences
- Not always easy to use in evaluation
What is meant by Patient-based Outcomes and why use them?
- Attempt to assess well-being from the patient's point of view
- E.g. health-related quality of life (HRQoL), health status, functional abilities
- Patient-reported outcome measures (PROMs) are measures of health that come directly from patients
- They work by comparing scores before and after treatment or over longer-periods
Why use patient-based outcomes
- Increase in conditions, where aim is managing rather than curing
- Biomedical tests just one part of picture
- Need to focus on patient's concerns (patient-centred care)
- Need to pay attention to iatrogenic effects of care
How can Patient-based Outomes be used?
- Used to assess benefits in relation to cost (is treatment worth the cost?)
- In clinical audit
- To measure health status of populations
- To compare interventions in a clinical trial
- As a measure of service quality
Describe the NHS Outcomes Framework 2013/2014 and NHS Contract for Acute Services
NHS Outcomes Framework 2013/2014
- Identifies PROMS as a key source of information about the outcomes of planned procedures.
- Domain 3: Helping people to recover from episodes of ill health or following injury.
- The indicator 3.1 Patient Reported Outcome Measures (PROMs) for elective procedures renamed and extended: 'Total health gain as assessed by patients'.
NHS Contract for Acute Services
- Standard NHS contract for Acute Services introduced in April 2008 included a requirement for all providers to report PROMs from April 2009 for 4 areas: unilateral hip replacements, unilateral knee replacements, groin hernia surgery and varicose vein surgery
- Patients undergoing these procedures invited to complete pre and post operative questionnaire.
Why introduce PROMs and what happens to the data?
- Improve clinical management of patients - informed shared decision-making, principal motivation in Sweden and USA
- Comparison of providers (hospitals) - => increase productivity through demand management, improve quality through patient choice, purchasing, P4P, etc (National PROMs Programme since 2009 in England)
- The data is published by Health and Social Care Information Centre. It can be broken down by provider, so comparisons can be made between Trusts. Commissioners are interested because the data indicates the quality of care provided. Patients are interested because the data can be used to inform their decision making.
- Routinely available, publicly accessible + focus on high quality providers
What are the challenges of PROMs?
- Minimising the time and cost of collection, analysis and presentation of data
- Achieving high rates of patient participation
- Providing appropriate output to different audiences
- Avoiding misuse of PROMs especially if there is political momentum (=> overuse)
- Expanding to other areas besides elective surgery: long term conditions, emergency conditions, mental health
Describe what is meant by Quality of Life and Health-related Quality of Life?
Best current definition of Health-related quality of life: 'quality of life in clinical medicine represents the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient'.
Explain about how HRQoL is a multidimensional concept
- Physical Function: mobility, dexterity, range of movement, physical activity, activities of daily living (e.g. ability to eat, wash, dress).
- Symptoms: pain, nausea, appetite, energy, vitality, fatigue, sleep, rest
- Global Judgements of health: recognizes differences in how people may expect their QoL to be and that infuences their satisfaction with healthcare etc (allows for subjectivity and relativity)
- Psychological well-being: psychological illness: anxiety, depression, coping, positive well-being and adjustment, sense of control, self-esteem
- Social well-being: family and intimate relations, social contact, integration, social opportunities, leisure activities, sexual activity and satisfaction
- Cognitive functioning: cognition, alertness, concentration, memory, confusion, ability to communicate
- Personal constructs: satisfaction with bodily appearance, stigma, life satisfaction, spirituality
- Satisfaction with care
How do we measure HRQoL?
2 main choices
- Qualitative methods
- Quantitative methods (specific vs generic instruments)
Describe Qualitative Methods (relatively uncommon)
- Very appropriate in some cases e.g. for some very rare conditions
- Gives you access to parts other methods don't reach
- Good for initial look at dimensions of HRQoL - informing development of quantitative instruments
- Very resource-hungry (need expert training, time)
- Not easy to use in evaluation, especially RCTs
Describe Quantitative Methods (more common)
- Quantitative approach relies on use of questionnaires known as 'instruments' or 'scales'
Should fulfil certain criteria - 2 veyr important properties of PROMs
- Reliability: is the instrument accurate over time and internally consistent? (if the patient has no change in health, she should get the same score each time on the measure)
- Validity: does the instrument actually measure what it is intended to measure? (a measure might be accessing only pain, and neglectig social aspects of illness)
Published instruments: developied in a rigorous and academic way, subject to peer review, published in a journal etc
- Reliability and validity already established
- Can be used to compare across different groups of patients using standardised measures
- But can be used indiscriminately and inappropriate