living with chronic illness Flashcards
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.
E.g Diabetes, COPD, arthritis, HTN
Chronic illness is often –> preventable, degenerative and costly (70% primary and acute care budget).
What is the prevalence of chronic illness/ long term conditions?
1/3 people living with at least 1 health condition
Of these: 24% have 2 LTC’s, 20% have 3 or more LTC’s.
This forms 50% of GP appointments
64% outpatient appointments
70% inpatient bed days
Why look at chronic illness experience?
Although aetiology and prognoses are very diverse, the psychological and social sequelae ( result or consequence of something) are very similar. There is an association between social and emotional experiences and coping and managing.
What are the common elements in patient’s “illness narratives” (experience of chronic illness).
1) Searching for meaning and explanation
2) uncertainty and unpredictability
3) Coping and resilience
What are the 4 main impacts of chronic illness on the individuals?
1) Activities of daily living –> work, hobbies, self care, caring
2) Social relationships
3) Social identity (how others see you)
4) Sense of self (biographical disruption)
What are 4 common coping strategies for chronic illness?
1) Denial in the early stages –> making space and time to accept the diagnosis, helps person take stock, presents difficulty if it persists
2) Normalisation –> the suffer comes to see their illness as part of normal life, e.g. smokers cough is normal for them, insulin injection normal for the diabetic. Others do not see the behaviour as normal and still construct an identity in which the person is sick.
3) Resignation –> total absorption into the “Sick role”, sense of self taken over by disease. Loss of adult responsibilities and drive to get better
4) Accommodation –> person acknowledges their illness, and to some degree may normalise it but critical difference is that the person regards their problem as but one component part of their self and focuses for most of the time on other aspects of their life. (like being a parent/ gardener/ artist..).
What is self management?
What is an expert patient?
- Self management is where patients actively seek to manage their condition. They known what works for them and are able to share knowledge/ expertise
- Expert patients are patients that take the lead in managing their condition --> shown there are better outcomes.
- An expert patient is someone who:
- Feels confident and in control of their life
- Aims to manage their condition and its treatment in partnership with HCP’s
- Communicates effectively with HCP’s, willing the share responsibility for treatment
- Is realistic about how their condition affects them and their family
- Uses skills and knowledge to lead a full life
What is the expert patient programme?
- Peer led self management programme
- Aims to improve self management
- 6 week programme suitable to any long term health condition
- Covers topics such as healthy eating, exercise, pain management, relaxation, action planning and problem solving
- Are some disease specific programmes
What are the benefits of the EPP?
What are some potential problems?
- Evidence bases benefits:
- more confidence that symptoms would not interfere with their lives
- felt better prepared for appointments with HCP’s
- Fewer visits to GP and ED.
- Potential problems:
- not attractive to everyone
- not everyone able to participate
- extra pressure on patient organisations
What is the Self regulatory model? (leventhal 1980).
- The self regulatory model provides a framework for understanding the impact that illness beliefs and emotions have on how an individual copes, adapts, and responds to illness.
- The model can be represented as a 3-stage process in which a patient’s perception of their illness (stage 1) guides a coping or an action-planning response (stage 2) followed by the appraisal stage (stage 3), whereby the individual monitors the success or failure of the coping process
- Representation of their illness is built on 1) identity 2) cause 3) consequences 4) timeline 5) cure/control
- This feeds into their interpretation as do social messages.
- Representation of their illness and interpretation of illness feed into the emotional response. Both representation and emotional response feed into coping strategy
- Coping either active approach or avoidance
- Feeds into appraisal of coping strategy –> effective coping or not?
What are illness beliefs?
What are illness representations formed from?
What does illness representation direct?
- Illness beliefs refer to a patients own implicit common sense understanding of their illness
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Illness representations are formed from 5 dimensions:
- Identity of illness - what is it?
- Cause - what caused it
- Time- how long will it last?
- Consequence- how will it impact my life?
- Control/ cure - can it be treated/ controlled/ managed?
- Illness representations direct illness behaviours
What is the clinical application of the self regulatory model? (SRM?)
- Self regulatory model has been applied to a range of chronic illnesses to help understand adaptation and coping
- Used to develop management plans, work with patient
What are the main changes in someones life when they are diagnosed with a chronic illness?
What do patients need to do?
- Main change it reduced QOL and shock.
- Patients need to:
- Adjust to their symptoms and disability
- maintain a reasonable emotional balance
- preserve self satisfactory self image and sense of competence
- learn about symptoms, treatment and self management
- relationships with friends and family
- form and maintain relationships with HCP’s
- Prepare for an uncertain future
What is crisis theory?
- Crisis theory proposes that coping begins with appraisal of the significance of the health problem in their life. Outcome of this appraisal leads to individual formulating adaptive coping strategies.
- Patient needs to find social and psychological equilibrium
- Challenges, setbacks and social influences are important and can influence coping responses.
What might a chronic pain management programme want a patient to develop?
- Acceptance
- self efficacy
- understanding of how thoughts, emotions, suffering and pain behaviours are related
- Needs MDT approach
