Help seeking and delay literature – Key insights
Purpose of the document
The purpose of this document is to give a brief overview of existing literature related to help seeking
behaviour and delay. It is not intended to be exhaustive; rather it seeks to present key points to
consider. These insights can be taken into account in designing and implementing your social
marketing intervention.
Key insights
Seeking medical advice for bodily changes is the exception, rather than the norm
The way in which bodily changes are interpreted is hugely significant and
influenced by personal, social and cultural factors, as well as the nature of the
change itself
Individuals diagnosed with cancer often do not realise the seriousness or
significance of their bodily changes prior to consultation/diagnosis
Fear, in terms of fear of embarrassment and fear of cancer, can influence helpseeking behaviour
Presentation with cancer is not a straightforward or linear process – there are
many factors across a number of levels which can influence help seeking
Knowledge of symptoms and risk are not sufficient to determine help seeking for
cancer
Medical help seeking is influenced by people’s attitudes, beliefs and social
context
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Background / Detail
The health service and the study of ‘illness behaviour’
When the National Health Service was first established in 1948, it was based on the assumption that
people would know when they were ill and in need of medical attention, and would seek help/use
the service accordingly (Calnan, 1987; Hardey, 1998). However, it soon became clear, when people
who didn't need medical advice sought it, and when people who did need medical advice didn't, that
it's a very complex picture and people don't necessarily behave how you would want or expect them
to.
Recognition of this helped to pave the way for study into what is broadly known as 'illness
behaviour' - essentially, how people recognise, interpret and respond to bodily changes (Mechanic,
1979). Of key interest in the study of illness behaviour are evaluation or interpretation of bodily
changes and decisions about the most appropriate course of action (Morgan, 2003). Researchers
have been investigating these areas for decades and much valuable insight has been gained.
Interpreting ‘bodily changes’
The process of recognising a bodily change is not straightforward. People aren’t automatically
alerted when something has changed – whether and when they notice that something is different
depends on attentional and interpretive processes (Cioffi, 1991; Gijsbers van Wijk and Kolk, 1997).
So if a person has competing priorities, it may take them longer to realise that something has
changed because they are not focused on, or thinking about, their body.
In much the same way, when individuals have recognised a change, they don’t automatically know
what it means or understand its significance – they have to bring meaning to it through a process of
interpretation. Through this process an individual may link their bodily change to disease, in which
case it becomes a symptom, or associate it with something entirely normal or benign.
Lots of different factors can impact on how a bodily change is interpreted; it depends on the nature
of the change itself, as well as personal, social and cultural factors. As Alan Radley writes, ‘there are
cultural expectations about which bodily disturbances require medical attention and which ones are
‘normal’’ (1994, p83). An interpretation is not fixed, so if the bodily change worsens or another one
develops, the interpretation can be revised.
People often look to other people to help them work out what their bodily changes might mean and
how they could/should respond – this has been referred to as the ‘lay referral network’ (Radley,
1994). Different people will use their friends and relatives in different ways and to different extents
– it’s been shown to vary with age, gender and social class (Radley, 1994).
The way in which an individual interprets their bodily change is important for how they act on it.
Even if an individual interprets their bodily change as a symptom, there are many things they might
do other than consult the doctor, for example, do nothing, decide to ‘wait and see’ or self-medicate.
Indeed, research has found that people experience bodily changes on a very regular basis, but only a
small proportion of these will ever be brought to the attention of health services. This is commonly
referred to as the illness or clinical iceberg (Wadsworth et al, 1971; Scambler and Scambler, 1984;
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Rogers et al, 1999). So, not seeking advice for a bodily change is the norm, rather than the
exception.
Help seeking
Coming from the position that not seeking advice is the norm, rather than the exception, the
question is not ‘Why did the person delay?’ but ‘Why go now?’. Working from this thesis, Zola 1973)
has suggested that people don’t seek help at their sickest point, but when they can no longer
accommodate the changes they are experiencing, and has suggested five ‘triggers’ for help-seeking:
1) Occurrence of an interpersonal crisis, such as death of a relative, which may call attention
to a person’s bodily changes and prompt them to do something about them
2) Perceived interference with social or personal relations – a bodily change interferes with
friendships, relationships and everyday living, prompting action
3) Sanctioning – family, friends or significant others agree that help-seeking is
needed/justified
4) Perceived interference with vocational or physical activity – changes stop someone
carrying out their job or other physically demanding activity
5) A kind of temporalizing of symptomatology – people place a time limit on their changes,
and consult if they haven’t resolved by that time, for example “I’ll go to the doctor if this
cough is still here in a couple of weeks” (Zola 1973; Earle, 2007).
David Mechanic’s insights on illness behaviour feature widely in the literature, as do Zola’s triggers.
The insights are useful, not least because they highlight the range of different factors which can
influence both interpretation and help-seeking:
1) Visibility, recognizability, or perceptual salience of deviant signs and symptoms
2) The extent to which the symptoms are perceived as serious
3) The extent to which symptoms disrupt family, work, and other social activities
4) The frequency of the appearance of the deviant signs or symptoms, their persistence, or
their frequency of recurrence
5) The tolerance threshold of those who are exposed to and evaluate the deviant signs and
symptoms
6) Available information, knowledge, and cultural assumptions and understandings of the
evaluator – knowledge about, and understanding of, what bodily changes may mean
7) Basic needs which lead to autistic psychological processes – anxiety about the perceived
seriousness
8) Needs competing with illness responses – competing needs and priorities
9) Competing possible interpretations that can be assigned to the symptoms once they are
recognized
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10) Availability of treatment resources, physical proximity, and psychological and monetary
costs of taking action (Mechanic, 1968; Earle, 2007).
‘Delay’ and cancer
‘Delay’ has been investigated in relation to many disease types, but arguably the largest amount of
enquiry is in the field of cancer. As early as 1938, a paper was published titled ‘The culpability for
delay in the treatment of cancer’ (Pack and Gallo, 1938).
Since this time, there has been a great deal of interest in ‘patient delay’ and cancer (see Andersen et
al, 2009 for an interesting discussion). Some of the studies have been descriptive observational
studies, often relying on examination of medical records or questionnaires, to assess the extent of
‘delay’ for particular cancer types. Others have sought to establish factors associated with delay and
have highlighted the importance of individuals not realising the seriousness or significance of
(Ramirez et al, 1999; Macdonald et al, 2004; Macleod et al, 2009).
Studies have also drawn upon qualitative methods to explore help-seeking and delay with
individuals diagnosed with cancer. Smith and colleagues (Smith et al, 2005) have brought together
many of these studies in a qualitative synthesis. The analysis of 32 papers across more than 20
different cancer types, highlighted key similarities irrespective of cancer site and country. The main
themes associated with delay in presentation were
Recognition and interpretation of symptoms
Fear of consultation (with respect to embarrassment and to the idea of cancer
itself).
The patient’s gender and the sanctioning of help-seeking also affected help-seeking (Smith et al,
2005).
It’s helpful to realise that there are many factors across a number of different levels which can
influence help-seeking behaviour, just as there are many which influence interpretation. As Una
Macleod and colleagues write,
‘Overall, research into the risk factors for patient delay indicates that presentation with
cancer is not a straightforward or linear process. Knowledge of symptoms and risk may be
necessary, but not sufficient to determine help seeking for cancer. People’s attitudes, beliefs
and social context clearly influence the process of medical help seeking’ (Macleod et al,
2009, pS98).
References
Andersen, RS., Vedsted, P., Olesen, F., Bro, F., Sondergaard, J (2009) Patient delay in cancer studies:
a discussion of methods and measures. BMC Health Services Research 9:189 doi:10.1186/1472-69639-189
Armstrong, A (2003) Outline of Sociology as Applied to Medicine (5th Edition). London: Arnold
Calnan, M (1987) Health and Illness The Lay Perspective. London: Tavistock Publications
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Cioffi, D. (1991) Beyond attentional strategies: A cognitive-perceptual model of somatic
interpretation. Psychological Bulletin 109 (1) 25-41
Earle, S (2007) Exploring health, In Earle, S., Lloyd, CE., Sidell, M., Spurr, S (Editors) Theory and
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Hardey, M (1998) The Social Context of Health. Buckingham: Open University Press
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Radley, A (1994) Making Sense of Illness The Social Psychology of Health and Disease. London: Sage
Publications
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Rogers, A., Hassell, K., Nicolaas, G (1999) Demanding Patients? Analysing the Use of Primary Care.
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