Illness representations and

self-management

Helen Pattison
At the end of these teaching sessions and
your further reading you should be able to:

Describe variation in symptom perception

and its impact on illness behaviour
Define illness representations
Explain the self-regulatory (common-sense)
model of illness behaviour
Indicate how illness representations are
measured
Explain the psychological factors involved
in self-management of chronic conditions
Why it is important to understand lay
perceptions of illness

Affects behaviour
Seeking help from professionals
Adherence to medication and
treatment regimes
Self management of chronic
conditions
How do we know we are ill?

Symptoms

Signs
Symptom Perception

Affected by cultural, social and

individual characteristics
Pennebaker’s (1982) attentional model
suggests that whether symptoms are
perceived depends on external and
internal cues and mood
Cioffi’s (1991) cognitive-perceptual
model also stresses the importance of
attribution of symptoms to illness
Key characteristics of symptoms
perceived as serious

Painful or disruptive
Novel
Persistent
Pre-existing chronic conditions
Attributions in illness

Of symptoms to disease

Of causes of disease
Components of illness representations

The initial work of Leventhal and others

used in-depth interview to derive
representations. 5 themes emerged:
Identity
Cause
Timeline
Consequences
Cure-Control
 Self-regulatory model of illness behaviour
(Leventhal et al 1980; Weinman et al 1996)

Cognitive
•Identity
•Cause
•Consequences
•Time line
•Cure/treatment
Stage 1: Stage 2:
Interpretation Coping Stage 3:
•Symptom perception •Approach/Avoidance Coping
•Social messages •Problem-based/Emotional Appraisal

Emotional
•Fear
•Anxiety
•Depression

Illness Representations
Self regulatory model

Treats illness as a stressor

Appraisal of threat and coping
determine behaviour
Beliefs are lay beliefs and not
necessarily determined by scientific or
medical knowledge
Has emotional and cognitive
components
Measurement of Illness
Representations

Commonly measured using a scale

developed by Weinmann and colleagues in
UK and New Zealand: The Illness Perception
Questionnaire (IPQ)
A revised version of the questionnaire (IPQ-
R) incorporates the 5 cognitive components,
emotional representations and ‘illness
coherence’
The IPQ has been validated in a range of
diseases
Illness Representations, self
management and Expert Patients
In UK, at any one time, as many as 17.5
million adults are living with a chronic health
condition
Patient non-compliance is frequently cited
as a central problem in the management of
long-term conditions (Carter et al 2003)
In 2001 the Dept of Health launched the
‘expert patient’ initiative aimed specifically at
encouraging self-care in people with chronic
conditions
Expert patients have education,
confidence and motivation to:

Have only occasional contact with health

professionals
Make the key decisions in their own care –
accessing professional health and social
services effectively
Alter drug doses and adapt their lifestyles in
response to subtle changes in symptoms or
signs
There is evidence that effective self-management
can improve health, reducing the incidence of
hospitalisation (Gibson et al 2004) and accident and
emergency attendances (Newman et al 2004)
Why patient self management?

Increased frequency of testing/monitoring

leads to better control
Improved (more equal) relationships with
health care professionals and better
adherence
Increased patient self efficacy (e.g. Smith
1996)
Convenience
Understanding how patients perceive their
condition is important, but helping them
become more active in their own care is the
real goal (Michie et al 2003)
Why not patient self management?

Obsession with testing (e.g. Creer &

Bender 1993)
Increased anxiety about condition (e.g.
Bradley 1994a)
Breakdown of relationships with health
care professionals
 Beginning self management

People receiving a diagnosis of a chronic, long-term

condition begin to make a series of adjustments over
time
Structured self-management education programmes will
not necessarily result in immediate behaviour change
and adherence to prescribed medical treatment plans
(Kralik et al 2004), because people’s responses are
linked to their social, cultural, emotional and
psychological needs (Pooley et al 2001) not just
knowledge
For some conditions, diagnosis is straightforward and
clear, e.g. diabetes or asthma, while others e.g.
Parkinson’s disease take many years to get a definitive
diagnosis.
 Illness representations in response to
self-management programmes
Participation in active self-management of a
condition is influenced by illness
representations
Identity
Timeline
Consequences
Cure-Control
Emotional representations
Provision of Coping Strategies (Schreurs et al,
2003)
Other factors

An individual’s involvement in self-

management is likely to fluctuate over
time: it may increase but it may also
decrease
Affected by length of time since diagnosis,
age, social support and level of education.
Not all people want to – or can – self-
manage a long-term condition (Sims 1999)
Participators in self-management are more
likely to be younger, female, middle-class
and better educated
 Further Reading

Benyamini Y, Leventhal E & Leventhal H (1997) Attributions and

Health in (Eds) Baum A et al Cambridge Handbook of Psychology
Health and Illness. CUP:Cambridge
Hagger MS and Orbell S (2003) A meta-analytic review of the
common sense model of illness representations. Psychology and
Health 18, 141-184
Leventhal H & Benyamini Y (1997) Lay beliefs about Health and
Illness in (Eds) Baum A et al Cambridge Handbook of Psychology
Health and Illness. CUP:Cambridge
Moss-Morris R, Weinman J, Petrie KJ, Horne R, Cameron LD, and
Buick D, (2002) The Revised Illness Perception Questionnaire (IPQ-
R) Psychology and Health, 17, 1–16
Ogden J (2000) Chapter 3 – Illness Cognitions in Health Psychology.
OUP: Buckingham
Petrie K & Moss-Morris R (1997) Coping with Chronic Illness in (Eds)
Baum A et al Cambridge Handbook of Psychology Health and Illness.
CUP:Cambridge
The Illness Perception Questionnaire website http://
www.uib.no/ipq/index.html (last accessed 16/10/08)
References
(You are not expected to read these)

Bradley C (1994) Contributions of psychology to diabetes

management Br J Clin Psychology 33: 11-21
Carter S, Taylor D, Levenson R (2003). A Question of Choice:
Compliance in medicine-taking. London: The Medicines Partnership.
Available at: http://www.medicines-partnership.org/ research-
evidence/major-reviews/a-question-of-choice
Cioffi D (1991) Beyond attentional strategies: a cognitive-perceptual
model of somatic interpretation Psych Bull 109: 25-41
Corben S and Rosen R (2005) Self-management for Long-term
Conditions: Patients’ perspectives on the way ahead. King’s Fund:
London
Creer TL & Bender BG (1993) Asthma in R. Gatchel & E Blanchard
(Eds.) Psychophysiological Disorders Washington: APA
Gibson PG, Powell H, Coughlan J, Wilson AJ, Abramson M, Haywood
P, Bauman A, Hensley MJ, Walters EH (2004). ‘Self-management
education and regular practitioner review for adults with asthma’ in
The Cochrane Library Issue 2. Chichester: John Wiley & Sons.
 References
(You are not expected to read these)

Kralik D, Koch T, Price K, Howard N (2004). ‘Chronic condition and self-

management: taking action to create order’. Journal of Clinical Nursing, 13, pp
259–67.
Kyngas H (2000). ‘Compliance of adolescents with long-term conditions’.
Journal of Clinical Nursing, 9 (4), pp 549–56.
Michie S, Miles J, Weinmann J (2003). ‘Patient centredness in chronic
conditions: what is it and does it matter?’ Patient Education and Counselling,
51, 197–206.
Newman S, Steed L, Mulligan K (2004). ‘Self-management interventions for
chronic illness.’ Lancet, 364, 1523–37
Pennebaker JW (1992) The psychology of physical symptoms NY: Springer
Verlag
Schreurs KMG, Colland VT, Kuijer RG, et al.(2003)
Development, content, and process evaluation of a short self-management
intervention in patients with chronic diseases requiring self-care
behaviours Patient Education and Counseling 51,133-141
Sims J (1999). ‘What influences a patient’s desire to participate in management
of their hypertension?’ Patient Education and Counselling, 38, pp 185–93.