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ILLNESS REPRESENTATIONS, COPING AND LOCUS OF CONTROL IN
BREAST CANCER: A COMPARATIVE STUDY AMONGST SOUTH ASIAN
INDIAN WOMEN AND WHITE INDIGENOUS WOMEN
Thesis submitted to the Faculty of Medicine of the University of Leicester for thedegree of Doctor of Clinical Psychology
By
Rebecca Martyn
Department of Clinical Psychology Centre of Applied Psychology
University of Leicester
June 2002
UMI Number: U16B240
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Acknowledgements
Thank you to Ed Miller for his guidance and to every one who took the time to take
part in this study. A big thank you to friends and family in London and Leicester for
their support, proof reading and supplies of wine gums.
ABSTRACT
This study investigated illness representations for breast cancer amongst a lay population of South Asian and White indigenous women. A comparative correlational design was used to examine illness representations, coping styles and health locus of control in relation to breast cancer. In addition subjects provided information on the levels of breast cancer awareness, levels of early detection behaviour and knowledge of risk factors and treatment. Relationships between the different components of illness representations and their associations with coping, locus of control and level of breast-self examination were explored. The sample comprised 17 South Asian women and 18 White indigenous women. No significant differences were found between groups on level of breast awareness or early detection behaviours. Illness representations for both groups were found to be high on identity, and moderately high on consequence, time-line, cure/ control and on risk/ treatment. Significant associations were identified for higher scores on cure/ control and risk/ treatment scales with lower scores on denial, acceptance and venting of emotion coping for the South Asian group. There was a significant correlation between cure/ control and level of breast self-examination for the White group. Moderately high scores on cure/ control and risk/ treatment are encouraging and are tentatively linked to less passive coping styles and higher levels of breast self-examination. Overall, there was a high level of similarity on the measures, and in early detection behaviours for the groups. These similarities may reflect the particular nature of this group of South Asian women. Implications of these findings are that health interventions should focus on raising knowledge for risk factors and treatment, and increasing beliefs in cure and control. Further investigation of illness representations for breast cancer amongst South Asian groups is needed. Age, socio-economic status and degree of acculturation are factors that may be particularly relevant in relation to early detection behaviour and coping styles.
CONTENTS PAGE
1.0 INTRODUCTION 1u Terminology 21.2 Description of Breast Cancer 41.3 Methods of Early Detection 51.4 Risk Factors for Breast Cancer 81.5 Social Cognition Models applied to Health
and Illness Related Behaviour10
1.6 Illness Representations and the Self-Regulation Model 121.7 The Structure of Illness Representations 151.8 The Development of Illness Representations 241.9 Relationship between Illness Representations, Coping and
Health Locus of Control26
1.10 Illness Representations and Breast Cancer 283.11 South Asian Cultures and Illness Beliefs 321.12 South Asian Women and Early Detection Behaviours 341.13 Summary 361.14 Description of Study and Research Questions 37
2.0 METHODOLOGY 412.1 Design 4122 Participants 4223 Measures 432.4 Procedure 52
3.0 RESULTS 543.1 Methods of Analysis 543.2 Research Findings 55
4.0 DISCUSSION 774.1 Comparing awareness of Breast Cancer and Early Detection
Behaviour between Groups77
4.2 Patterns of Inter-relationships between the IPQ Components within Groups
78
43 Illness Representations, Coping Responses and Locus of Control used by the Groups in relation to Breast Cancer
81
4.4 Inter-relationships between Illness Representations with Coping and Locus of Control for Both Groups
85
4.5 How Illness Representations, Coping Responses and Locus of Control relate to levels of Breast Self-examination
88
4.6 Clinical Implications 894.7 Methodological Issues 914.8 Suggestions for Future Research 984.9 Conclusions 100
u
CONTENTS PAGE
5.0 REFERENCES 103
6.0 APPENDICES 114Appendix A: Background Questionnaire 115Appendix B: Illness Perception Questionnaire 117Appendix C: COPE Inventory 121Appendix D: Multidimensional Health Locus of Control
Scale-MHLC125
Appendix E: Letter of Invitation to Participants 126Appendix F: Participant Information Leaflet 127Appendix G: Participant Consent Form 128Appendix H: Inter-correlations between the IPQ components
and the COPE subscales for the White Group129
Appendix I: Inter-correlations between the IPQ components and the COPE subscales for the South Asian Group
130
Appendix J: Inter-correlations between the IPQ components and the MHLC Scale Both Groups
131
Appendix K: Correlations between IPQ components and BSE for Both Groups
132
Appendix L: Correlations between COPE Scale and BSE for Both Groups
133
Appendix M: Correlations between MHLC Scale and BSE for Both Groups
134
iii
LIST OF
Table 1:
Table 2:
Table 3:
Table 4:
Table 5:
Table 6:
Table 7:
Table 8:
Table 9:
Table 10:
Table 11:
TABLES
Recruitment Sources
Internal Consistency scores for IPQ Scales (Cronbach’s Alpha)
Summary of Information relating to Sample Characteristics - Both Groups
Summary of Information relating to Sample Characteristics for Sub Groups within South Asian Group
Summaiy of Information relating to Breast Cancer Awareness
Summary of Information relating to Early Detection Behaviour
Median Scores and Inter Quartile Ranges for IPQ Components by Ethnic Group
Inter-correlations among the IPQ components For the White Group
Inter-correlations among the IPQ components For the South Asian Group
Median Scores and Inter Quartile Ranges on the COPE Scale by Ethnic Group
Median Scores and Inter Quartile Ranges on MHLC By Ethnic Group
PAGE
42
48
56
57
58
59
60
69
70
72
73
iv
LIST OF FIGURES PAGE
Figure 1: Symptoms of Breast Cancer as described by the 63White Group
Figure 2: Symptoms of Breast Cancer as described by the 64South Asian Group
Figure 3: Causal Beliefs of Breast Cancer as described by the 66White Group
Figure 4: Causal Beliefs of Breast Cancer as described by the 67South Asian Group
v
1.0 INTRODUCTION
Over the last two decades, psychologists have become increasingly involved in
investigating the cognitive processes that people use to make sense of the illnesses
that they experience. Theoretical frameworks have been developed that seek to
identify the individual’s own understanding, interpretations or beliefs regarding his or
her health or illness-related behaviour. Various terms are used for these cognitive
models including ‘illness representations’, ‘common-sense beliefs’ or ‘lay beliefs’.
These terms all describe the fact that individuals have models or beliefs about the
illnesses that they experience. A central tenet of these models is that an individual’s
representations about an illness will shape and guide their subsequent behaviour in
response to an illness threat. Illness representations may influence the type of coping
styles that an individual adopts, their utilisation and uptake of services, and their
interaction with health care professionals (Hampson, Glasgow and Zeiss, 1994).
Recently, a number of psychological factors have been highlighted as determinants of
adaptive outcome in chronic illness, and individuals’ cognitive representations of their
illness, their coping behaviours and their health locus of control have been found to be
important. In the present study, the relations between illness representations, coping
behaviours, locus of control and breast self-examination were investigated in a sample
of healthy South Asian and White indigenous women.
There have been various studies looking at people’s lay beliefs and illness
representations of cancer in general. Few studies have looked at breast cancer in
particular using an illness representation approach, or have looked specifically at
South Asian women’s views of breast cancer. Consequently, little is known about the
illness representations of this group of women with regard to breast cancer, and how
l
these beliefs affect their response to breast cancer threats. There is evidence that
suggests lower than expected participation rates in breast screening practices, as well
as clinical observations that many South Asian women are being diagnosed at a later
stage of their breast cancer (e.g. Johnson, Bottorff, Balneaves, Grewal, Bhagat, Hilton
and Clarke, 1999). An appreciation of some of these lay theories and beliefs about
breast cancer has important implications for providing useful information to help
promote the utilisation of screening services and help-seeking behaviour for breast
cancer threats. This suggests that investigation of representations of breast cancer held
by South Asian women and how these beliefs influence their health practices would
be valuable.
The following review will initially outline a description of breast cancer, highlighting
issues connected to risk factors and the early detection of breast cancer. The review
will then briefly discuss social cognition models that have been used to study health
and illness behaviours, and then continue with a description of the “Self-Regulation
Model” (Leventhal, Meyer and Nerenz, 1980; Leventhal, Nerenz and Steele, 1984;
Leventhal and Nerenz, 1985). This theoretical framework has been widely used to
explore cognitive explanations for illness-related behaviours, and this approach to
looking at breast cancer was utilised in the present study. There will be a particular
emphasis on illness representation research connected to cancer, specifically breast
cancer, and on research into health related behaviour with South Asian ethnic groups.
1.1 Terminology
Understandings of the concepts of race, culture and ethnicity are diverse and often
2
used interchangeably in the literature. Definitions of these terms as used throughout
this study will now be provided, in order to provide clarity of meaning. Fernando
(1995) provides useful definitions, and these definitions were adopted for the
purposes of this study. The word ‘culture’ is used to denote a way of life, including
patterns of behaviour, beliefs, values and language. Culture is dynamic in nature and
responsive to other cultures. The term ‘race’ is a social entity, which implies that a
skin colour and ancestry determines the way in which people are treated. The term
‘ethnicity’ indicates a sense of belonging which encompasses aspects of both race and
culture.
In Britain, the term Asian is usually used to describe people who may have ancestors
from the Indian subcontinent, including India, Pakistan and Bangladesh. It can also
include people from East Africa, most commonly people from Kenya and Uganda,
whose ancestors emigrated from South Asia. The term ‘South Asian’ was adopted for
this study to avoid confusion with other ‘Asian’ groups who may originate from a
different region of the Asian subcontinent.
The term ‘South Asian’ relates to a heterogeneous group with a number of different
languages and religions, including Hindu, Sikh and Muslim. However, because South
Asians originate from the Indian subcontinent, there are some commonalities in
cultural practices concerning food, dress, ceremonies and cultural norms. Hence,
although the term ‘South Asian’ is defined geographically, it also denotes a cultural
heritage and sense of identity that comprises more than a country of origin.
In the cross-cultural literature the terms ‘Western’ and ‘Eastern’ are often used to
3
describe different cultural values. ‘Western’ refers to the dominant culture of the
industrialised or developed countries of Europe, USA, Canada, Australia and New
Zealand. The term ‘Eastern’ relates to ‘Asian’ cultural values and practices, and it
may also be used to refer to undeveloped countries. It is assumed that aspects of life
and culture within ‘Western’ countries will have more similarity with each other and
will be more different from the rest of the world. The same is assumed for ‘Eastern’
ways of life and culture.
1.2 Description of Breast Cancer
Cancer is an ‘old’ disease that we have known about for a long time, but it still defies
ready description (Baum and Schipper, 1998). Cancer is actually a set of related
diseases in which altered cells of the body, cancer cells, multiply in unrestrained and
rapid fashion, generating tumours or clusters of cells whose growth is uncontrollable.
However, not all tumours are malignant. Benign tumours do not grow uncontrollably
and do not spread to other parts of the body. The spreading of cancerous cells is called
metastasis and is characteristic of malignant tumours. As this metastasis occurs there
is damage to the DNA inside cells. The rapid increases in the number of abnormal
cells causes a diversion of nourishment from functional cells and eventual invasion of
bodily tissue by the cancerous growth. This proliferation of cancer cells can cause
damage or death of organ systems and the organism (Baum and Schipper, 1998).
Cancer of the breast occurs in women of all races, and appears to have occurred
throughout history (Fallowfield and Clarke, 1991). It is slowly increasing in
frequency all over the western world, and it is consistently reported to be the most
4
common malignancy in women of developed countries (Baum and Schipper, 1998).
As women from eastern cultural backgrounds are influenced by a more western
lifestyle, research indicates that their originally lower incidence of breast cancer
begins to rise (Stanford, Herrinton, Schwartz, and Weiss, 1995). Breast cancer is a
feared disease, not only because it is life threatening, but also because it can affect a
woman’s ‘sense of self with particular regard to her sexuality and femininity (Bailey,
2000).
Breast cancer kills more women in the UK than any other cancer, approximately
14,000 women a year and it remains the leading cause of death among women aged
35 to 55 years (Cancer Research Campaign, 1996). In 1995 33,000 new cases of
breast cancer were diagnosed in the UK (Cancer Research Campaign, 1996). It is
currently estimated that 1 in 12 women will develop this disease at some time during
their lifetime (Cancer Research Campaign, 1996). Mortality from breast cancer has
fallen dramatically over the last five years in the UK, probably due to earlier detection
and improved treatment.
13 Methods of Early Detection
Currently, the only method of primaiy prevention for a tiny minority of women is
prophylactic mastectomy where a woman’s breast tissue is surgically removed prior to
any clinical evidence of disease onset. This is obviously an extreme option and is not
yet fully evaluated. Consequently it is likely to be used only if there are strong reasons
for doing so. Thus, based on current knowledge there is little that can be done to
decrease the incidence of breast cancer. However, the stage at which breast cancer is
diagnosed greatly influences survival chances (Austoker and Evans, 1992). Therefore
5
the main impetus towards reducing deaths from breast cancer is based on achieving
diagnosis at the earliest possible stage. Prevention techniques recommended to reduce
breast cancer mortality and morbidity include mammography, clinical breast
examination and breast self-examination.
13.1 Mammography
Mammography involves taking a breast x-ray that is designed to highlight breast
lumps that are likely to be cancerous. Using this method, radiologists can detect
lumps before they can be felt by external examination (Baum and Schipper, 1998). A
study of the data from a number of countries concluded that only in the case of
mammography in women over 50 was there unequivocal evidence of a reduction in
mortality (Baum and Schipper, 1998). On the basis of these findings, in 1988,
following publication of the Forest report (Patrick, 1995), the Department of Health
launched a nationwide mammographic screening programme to detect breast cancer
in women aged 50 to 65. Women are sent an appointment to attend for screening
every three years. It is not compulsory to attend.
Evidence suggests that the lack of efficacy of mammography in younger age groups
may be due to poor quality imaging, and that as quality improves, mammography will
become equally effective over all age groups (Baum and Schipper, 1998). However,
as of yet, there is no evidence to support regular screening in women younger than 50
years of age, and this is a matter of ongoing controversy (Baum and Schipper, 1998;
Bailey, 2000).
6
1.3.2 Clinical Breast Examination (CBE)
Physical examination of the breast by nurses or doctors trained in the technique is
thought to be a useful component in screening for breast cancer. Austoker and Evans
(1992) comment that clinical breast examination is not widely offered on a regular
basis and is likely to be conducted at the discretion of the individual general
practitioner.
1.3.3 Breast Self-Examination (BSE) and Breast Awareness
Although mass screening programmes for breast cancer have been welcomed for
health promotion purposes, they are not always attended by those women most likely
to benefit (Faithfull, 1994). The advantage of breast self-examination (BSE) is that it
is a simple, cost-free, non-invasive technique that has a good chance of discovering
changes in breast tissue (Stemberger, 1994). Since over 90% of breast cancers are first
detected by the woman herself, the rationale for regular self-examination is to increase
the likelihood of detecting a tumour at the smallest possible size (Baum and Schipper,
1998). The recommended BSE techniques involve inspection and palpation of the
breasts in a variety of postures, at a regular time each month (Bailey, 2000). BSE
programmes have been established with the aim of teaching women self-examination
techniques and encouraging them to self-examine every month.
There is considerable controversy surrounding BSE. In October 1991 some confusion
was caused when Sir Donald Acheson (the retiring Chief Medical Officer of the
Department of Health) implied that breast self-examination was not effective (cited in
Bailey, 2000). Hill, White, Jolley and Mapperson’s (1988) meta-analysis of BSE
outcome studies showed that there were equal numbers of studies showing significant
7
and no significant benefit from BSE practice. Consequently, the UK Department of
Health Breast Screening Advisory Committee now recommends a breast awareness
approach rather than ritualistic breast self-examination. The intended message of this
approach is that women should be aware of any changes in their breasts as part of
increasing their knowledge of their own health. By performing regular monthly breast
self-examination, women become acquainted with what is normal for them, and any
changes noticed serve as an effective warning (Stemberger, 1994).
1.4 Risk Factors for Breast Cancer
It is becoming increasingly recognised that there are several factors that can increase a
woman’s risk of breast cancer. Baum and Schipper (1998) and Kelsey (1993) have
summarised risk factors as follows.
Age is the single biggest risk factor in breast cancer (Kelsey, 1993; Baum and
Schipper, 1998). Incidence rates for breast cancer increase steadily with age, past the
age of 35 years. Approximately 50% of breast cancers occur in women aged between
50 and 69 years of age. A further 30% of breast cancers occur in women of 70 years
and above. This is thought to be partly related to menses-related factors. There is
increased risk associated with women who start menstruating early or who pass the
menopause late. There also seems to be a protective effect of early first pregnancy
(before the age of 30). It has been suggested that it is the number of menstrual cycles
before first pregnancy that ultimately determines the risk of breast cancer. A higher
risk for breast cancer has been connected with having the first child after the age of
30, or remaining childless (Baum and Schipper, 1998).
8
There are marked geographical variations in the incidence of breast cancer (Baum and
Schipper, 1998; Kelsey, 1993). The highest incidence rates are seen in western
countries, and the lowest rates are found in Asian and African countries. This
emphasizes the importance of environmental risk factors as women from low-risk
countries who emigrate to higher risk countries ultimately develop the higher risk
associated with their new country (Baum and Schipper, 1998; Kelsey, 1993).
Demographic factors including higher socio-economic class and living in urban areas
have also been linked with higher risk of breast cancer. However, socio-economic
class is also linked to higher survival rates (Kelsey, 1993).
Within populations, genetics plays a small role in determining the risk of breast
cancer. For individuals with a strong family history, or who carry one of the
associated genes, heredity plays an important part. The risk of breast cancer increases
2 to 3 fold for women with a first degree relative with breast cancer. Overall, about
10-15% of breast cancers are attributable to family history, and half of these can be
attributed to specific genetic endowment. These genes are implicated in
approximately 4% of all breast cancers, and in up to 25% of cases diagnosed before
the age of 40 (Baum and Schipper, 1998).
Some studies have demonstrated higher risk associated with oral contraception and
hormone replacement therapy. However, evidence remains controversial and should
be weighed up in the context of women’s health in general (Baum and Schipper,
1998).
9
1.5 Social Cognition Models applied to Health and Dlness Related Behaviour
Over the last two decades psychologists have become increasingly involved in
developing models to try to understand people’s cognitions in relation to health and
illness behaviour. These social cognition models relate to how people make sense of
social situations, both with regard to others and themselves. These models have been
applied to studying health behaviours in two broad areas: models which focus on
predicting future health behaviours; and those which are related to how people explain
or make sense of illnesses.
There are a number of different social cognition models. It is beyond the scope of this
review to discuss all of these. A brief summary of two of the more widely used
models follows. These will be discussed in relation to the present study.
Many social cognition models of health behaviour have their origins in more general
‘expectancy-value’ models of motivation which developed from social learning theory
(Rotter, 1966). This approach proposes that individuals are motivated to maximise
gains and minimise losses. Behavioural choice and persistence are a function of the
expected success of the behaviour in attaining a goal and the value of the goal.
Models such as th t “Health Belief Model” (Becker, 1974) and the “Theory of Planned
Behaviour” (Ajzen, 1985) have their roots in the4 expectancy-value’ approach.
The Health Belief Model (Becker, 1974) was the first systematic approach to include
psychological variables to explain health behaviour (Diefenbach and Leventhal,
1996). The model postulates that the likelihood of an individual undertaking a
10
particular action is seen as a function of the individual's perceptions of their
susceptibility to the illness, the seriousness or threat of the illness, and the potential
benefits and costs involved in undertaking the particular action. Cues to action will
trigger whether the behaviour is performed. These cues can be internal (e.g. the
perception of symptoms), or external (such as health education messages).
The Health Belief Model was developed in an attempt to explain the various factors
influencing health behaviours, particularly preventive behaviours. Consequently it is
more suited to the investigation of preventive behaviours or sick-role behaviours
rather than the investigation of people’s beliefs or perceptions about a particular
illness. Unlike the Self-Regulation Model the Health Belief Model is static i.e. there is
no distinction between the motivational stage and the actions stage. In addition it has
been suggested that the Health Belief Model is more a loose association of variables
rather than a model (Conner and Norman, 1994), and that the key components of the
model are now so large that their inclusion in any one study would not be feasible.
Thus an overall test of the entire model would not be possible (Diefenbach and
Leventhal, 1996).
The Theory of Planned Behaviour (Ajzen, 1985) is another theory that has been
widely applied to understanding a range of health behaviours. This theory is based on
the assumption that most human behaviour is under voluntary control and hence is
largely guided by intention. Intention is determined both by the individual’s personal
attitude towards performing the behaviour and by social norms. The model is strong
in relation to causal links between the variables, however assessment of subjective or
normative beliefs is difficult The model does not encompass any assessment of health
threats and omits factors such as barriers to action. As with the Health Belief Model,
the Theory of Planned Behaviour was developed to investigate health-related
behaviours and was not designed to reflect the ways that individuals think about their
own health or illness concerns.
There are a number of other social cognition models that have been applied to health
and illness behaviour. Some of these include: health locus of control (discussed in a
later section); protection motivation theory and self-efficacy models. However, these
models are more applicable to actual health threats rather than the understanding of
illness representations required in the present study. Thus, for the reasons outlined
above, the Self-Regulation Model was chosen as the theoretical framework for this
study.
1.6 Illness Representations and the Self-Regulation Model
In the literature the term illness representations has been referred to in a variety of
different ways. Other terms used interchangeably have included common sense, or lay
beliefs, illness perceptions, schemata or cognitions, and personal models or implicit
beliefs of illness. Despite the different terminologies these approaches all share a
central emphasis on the importance of the models or beliefs that are used by an
individual to try and make sense of their illness experiences.
The “self-regulating processing system” or common-sense model of illness
representation (Leventhal, Nerenz and Steele, 1984) has provided the basis for the
majority of research conducted within the field of illness representation. The model
developed from the early work of Leventhal and his colleagues (Leventhal, Meyer and
Nerenz, 1980; Leventhal et al, 1984) and has its origins in cognitive psychology and
12
work on problem solving. The model emerged from a series of studies conducted in
the sixties. These examined the role of fear communications in facilitating change in
peoples’ attitudes and behaviours around recommended health actions (Leventhal et
al, 1980; Leventhal et al, 1984). Leventhal and colleagues describe it as a general
systems model in which health beliefs, i.e. the representation of health threats, along
with coping procedures and rules for appraising outcomes, are conceptualised as
major components in the system, generating an individual’s efforts at self and
environmental regulation (Leventhal et al, 1980).
As a central tenet the model assumes that individuals are active problem solvers, who
construct internal representations that serve to guide their illness behaviour. The way
in which an individual responds to a particular illness is directed by their perceptions,
common sense beliefs, or illness representations about their illness (Leventhal et al,
1980). Individuals are not seen as passive recipients of medical advice, rather they
continually take in and interpret information and use it to try and make sense of their
illness.
The model proposes that when faced with a health threat, people use an active
information processing system, or in Leventhal’s terminology a ‘parallel-processing
system’ which co-ordinates the mental and emotional activity involved in the
construction of illness representations. The system is parallel because it conceives of
the individual as a problem solver dealing with two phenomena: the perceived reality
of the health threat, and emotional reactions to this threat. The individual develops not
only an ‘objective’ representation and plan for coping with a health threat, but also
experiences an ‘emotional’ response to that threat and a plan for managing the
13
emotions. The two pathways are labelled parallel because although there is a
considerable degree of independence between them, they interact throughout the
course of the illness experience.
A further assumption of the model is that this parallel processing system operates via
three recursive stages. These processing stages are defined as: (i) the cognitive
representation stage; (ii) the action planning or coping stage; and (iii) the appraisal or
coping response stage (Leventhal et el, 1984; Scharloo and Kaptein, 1997). The
cognitive representation stage entails the individual forming an illness representation
of the illness threat, along with an accompanying emotional component. In the action
planning or coping stage the individual contemplates and undertakes plans and actions
for coping with the problem. In the third stage, the appraisal stage, plans and actions
are evaluated. During this stage, these evaluations can feed back into the prior stages
and this may lead to subsequent changes in the illness representation or in the coping
response.
The final assumption underpinning the model is that it is hierarchically organised. It is
seen as operating at both concrete (e.g. somatic sensations) and abstract levels (e.g.
memories about past illness experiences), at each of the above three processing stages.
This creates the possibility of conflict between these two overarching levels. These
discrepancies between the abstract and concrete (or objective and emotional) levels
can produce intense emotional reactions or confusion, or difficulties with coping.
Leventhal et al (1984) described an example of this. They reported the example of
patients who were receiving chemotherapy treatment for a tumour. Following
treatment, they found that often the patient felt worse (e.g. nauseous and tired),
14
although they may have experienced a significant improvement in their condition (e.g.
a reduction in the size of the tumour). This discrepancy often exacerbated feelings of
ambivalence and distress whilst undergoing treatment.
1.7 The Structure of Illness Representations
According to the self-regulation model, when faced with a health threat, external and
internal stimuli evoke illness representations. These illness representations are
decoded by schematic structures of prior health and illness experiences (Diefenbach
and Leventhal, 1996). A matching process then occurs, whereby the meaning or
representation of the health threat will be shaped by its similarity to one or another
schematic structure of a prior illness episode, or a schemata of an imagined disease,
e.g. cancer.
Much of the initial research into illness representations was concerned with
identifying the common components, themes or structures that people use during this
matching process. Leventhal and colleagues (Leventhal et al, 1980; Leventhal et al,
1984; Meyer, Leventhal and Gutmann, 1985) identified four original components.
Lau and Hartman (1983) went on to identify an additional fifth component. These five
components are now commonly accepted as constituting the structure of illness
cognitions.
The five components or attributes are identity, time-line, consequences, cause, and
cure/ controllability. The identity component includes the disease label and the
symptoms associated with it. The time-line component relates to the expected course
15
and duration of the illness, and answers questions about whether the stimulus is acute,
chronic or cyclic. The consequences component relates to the short and long-term
effects of the illness, and its physical, social, economic and emotional effects. The
cause component denotes the factors considered to have led to the development and
onset of the illness. The cure/controllability component indicates the beliefs about
control and cure that the individual has regarding their condition, for example the
control aspect might relate to whether the person feels the illness will be responsive to
self and/ or professional intervention (Lau and Hartman, 1983).
Within the literature there has been debate as to the veracity of these five components
and this will now be reviewed. The four component structure first developed
following research by Leventhal and colleagues (Leventhal et al, 1980; Leventhal and
Nerenz, 1982). They conducted structured open-ended interviews with several distinct
groups of patients including hypertensive patients, cancer patients undergoing
chemotherapy, and cardiac by-pass surgery patients. Four common themes were
identified. These were identity, time line, consequences and cause.
Lau and Hartman (1983) investigated the illness representations for common every
day illnesses with college students. They asked participants to think back to the last
occasion they were sick and then using a series of open-ended questions, asked them
to describe why they believed they had become sick, and why they believed they got
better. Most people involved thought back to relatively common or everyday illnesses
such as colds or flu, rather than the chronic or more serious illnesses investigated by
Leventhal5s research group. The descriptions given by their sample provided further
support for Leventhal5 s four components and their research provided evidence for
16
commonalities of structure across different illness types. They also found evidence for
a fifth component, that of cure/ control.
Lau and Hartman (1983) argued that Leventhal’s research overlooked the existence of
this fifth component primarily because he studied people with chronic or life-long
diseases, and these patients would have been unlikely to focus on how they might
recover from their illness. However, in their studies Lau and colleagues set out to
specifically address this ‘oversight’, and therefore explicitly asked their participants
about how they recovered from their illnesses. Consequently, the design of their
studies means that the cure/ control component may only have become apparent
because it was specifically investigated.
However, further support for this five component model of illness cognition was
found by Bishop, Briede, Cavazos, Grotzinger and McMahon (1987). Their
participants (undergraduates) were shown sets of symptoms that were described as
experienced by a friend. The symptoms varied in terms of both familiarity and
seriousness. After reading each set of symptoms, participants were asked to describe
other details that might be associated with the friend’s symptom experience. These
open-ended responses were then coded into seven categories with 76 percent being
coded into the five illness representation categories. Bishop et al (1987) deemed their
categories broadly consistent with Leventhal et al’s (1980; 1984) original four and
Lau and Hartman’s (1983) additional fifth component.
Working from a different methodological perspective, Turk, Rudy and Salovey
(1986), like Leventhal, undertook research to determine if a generic illness
17
representation structure could be empirically demonstrated. Their factor analytic
study proposed a four dimensional structure of illnesses composed of seriousness,
personal responsibility, controllability and changeability. Although Turk et al’s
(1986) identified dimensions were different, Lau, Bernard and Hartman (1989)
propose that the different methodological approaches used may account for the
resulting differences in structure. The factor analytic approach adopted by Turk et al
(1986) tends to emphasise differences in disease conceptualisation, whereas the
components approach adopted by Leventhal and colleagues tends to emphasise the
shared features of disease representations (Lau et al, 1989). In addition, Bishop (1991)
suggests that Turk et al’s (1986) seriousness factor could be deemed conceptually
equivalent to Leventhal et al’s (1980; 1984) consequences factor, the personal
responsibility factor could incorporate cause and cure, and the changeability factor
could refer to time-line. Thus, the two sets of dimensions still have considerable
commonality in structure.
In conclusion, the research to date despite using different methodologies supports a
generic five-factor structure of illness representations. This holds across different
disease types and populations. Hence it is now widely recognised that illness
representations are organised along the five main components of identity, time-line,
consequences, cause and cure/ controllability. These five components will now be
described in more detail.
1.7.1 Identity
The identity component consists of the label and symptoms that define the health
threat Label and symptoms are the abstract and concrete facets of the identity and are
18
tightly linked to each other.
It is argued that a symmetrical relationship exists between the two, so that if a person
has symptoms she or he will seek a diagnostic label, and if labelled (diagnosed), she
or he will seek symptoms. In order to construct an identity for their illness the two
elements need to be integrated.
Research carried out by Savage and Clarke (1998) indicated that symptoms play an
important role in the decision to seek screening for breast cancer. In a study of
screeners and under-screeners, they found that under-screeners indicated that a person
would have symptoms if they had cancer. Conversely, the screeners recognised that
screening might detect signs or indicators of breast cancer before symptoms became
apparent. This example demonstrates that the use of symptoms to monitor illness is
not always appropriate, and this may be particularly relevant to early cancer detecting
behaviour.
1.7.2 Time-line
The time-line component relates to the duration and development of an illness. Time
line tends to be conceptualised according to one of three main models. These are:
acute, where the illness is symptomatic but curable; chronic, where the illness is long
lasting or permanent regardless of symptoms; and cyclical where the symptoms of the
illness are recurrent (Leventhal et al, 1984); Meyer et al, 1985).
The perceived duration of an illness or health threat has been shown in some instances
to affect adherence to treatment. Meyer et al (1985) found that amongst individuals
19
commencing treatment for hypertension for the first time, 58% of those individuals
who perceived their illness as acute dropped out of treatment within 6 to 9 months, in
comparison to the 17% of those who perceived their illness as chronic.
The picture for cancer patients is different Leventhal et al (1984) found that although
40% of women in chemotherapy treatment for metastatic breast disease likened their
illness to an acute, curable condition, virtually none of these women stopped
treatment Six months later, the proportion believing that the disease was acute had
declined to 20%. In this study, time-line had no effect on adherence as the
consequences of stopping treatment were serious, and included the prospect of a
rapid, painful death and social pressure to remain in treatment. This suggests that for
diseases like cancer, with potentially serious consequences, these consequences may
override other components.
1.73 Consequences
The consequences component refers to the perceived somatic, social, emotional and
economic impact that the disease has on the person’s life (Leventhal and Benyamini,
1997). Prohaska, Keller, Leventhal and Leventhal (1987) reported that representations
about the consequences of an illness tend to influence coping more than the identity
and time-line components. This seems to be particularly true of cancer.
The treatment of breast cancer can include radiation and chemotherapy. Both these
treatments can have severe side effects (Buick, 1997). Buick (1997) points out that the
treatment of breast cancer can appear to be more inimical than the symptoms of the
disease. However, research indicates that patients persist with therapy even in the face
20
of adverse side effects. Taylor, Lichtman and Wood (1984) reported that few women
with breast cancer refused chemotherapy and most complied with the treatment
regimen. Buick (1997) suggests that this is because the perceived consequences of
breast cancer are seen as very severe.
1.7.4 Cause
The causal beliefs that individuals hold about their illness have been classified into
three categories (Moss-Morris and Petrie, 1994). These are internal, external and
‘chance’ categories. Individuals may hold internal beliefs about the causes of their
illness. They may believe that they are personally responsible for their illness, and
believe that factors such as poor diet and their state of mind may have been major
causes. In contrast, individuals may believe that their illness is the result of external
factors over which they have limited control. This would implicate factors such as
germs, or pollution of the environment. In turn, ‘chance’ factors might include
considering genetic or hereditary factors as the most relevant.
Taylor et al (1984) posit that when individual’s encounter a sudden threat or change,
such as the onset of a severe illness, individual’s will initiate a causal search in an
effort to understand that threat. This search is undertaken with the proviso that
understanding the threat will help to predict and control it. Thus, Taylor et al (1984)
argue that causal beliefs have important ramifications for illness management
strategies.
It is important that efforts are made to understand the attitudes and beliefs that women
21
have about breast cancer and its causal factors as these have implications for all stages
of the management of the disease. In their review of lay attitudes, beliefs, screening
and breast self-examination Fallowfield and Clarke (1991) found that studies suggest
that for a woman to engage in BSE or mammographic screening she must believe
herself to be susceptible. It is therefore important to try and identify the precise
reasons why a woman might consider herself susceptible. This entails investigating
what women consider are risk factors, and which of these risk factors they consider
most relevant to them.
Kroode, Oosterwijk and Steverink (1989) found that cancer patients’ search for
possible explanations for their cancer, and that they often develop explanations that
are not in accordance with the physician's view. As Kroode et al (1989) point out
there is a lack of clear scientific knowledge about the cause and course of most types
of cancer. Breast cancer is no exception, and when cancer patients cannot be provided
with what they consider satisfactory explanations for their illness, then patients’ own
common sense or informal models of cause may become particularly important.
1.7.5 Cure/Controllability
The cure/ controllability component relates to beliefs that the illness can be prevented,
controlled, and/ or cured (Lau and Hartman, 1983). For acute and common illnesses,
recovery is usually just a matter of time, and so beliefs regarding cure and treatment
are usually straightforward and appropriate. For chronic, life-long and more serious
diseases, there may be no direct cure as such, and so the relationship between the
cure/ control component and health behaviour is more complex.
22
This picture is true of breast cancer, where relatively little is known of the disease
aetiology, and where existing treatment options, such as surgery, radiation and
chemotherapy, have severe side effects, and no sure guarantee of success.
Buick (1997) assessed patients’ knowledge of radiation treatment amongst a group of
women undergoing adjuvant radiation treatment for breast cancer. Findings were that
23 % of women did not know the name of the treatment and 46% stated that they were
having the treatment because their doctor told them to, without any clear
understanding of why. Buick’s (1997) findings were in line with earlier research that
has found that patients were unprepared for treatment side effects and that many
patients held misconceptions about the specific nature of treatment (Isler, 1971; Peck
and Boland, 1977).
In their study of the illness representations of screeners and under-screeners, Savage
and Clarke (1998) found differences in beliefs regarding the treatment and cure of
cancer. Screeners expressed less concern about cancer and gave more positive
examples of the successful treatment of cancer. Under-screeners were more likely to
express greater cynicism about the medical profession, and recounted more negative
impressions of the treatment of cancer. This suggests that illness representations
around cure and control have implications for women’s early cancer detection
behaviour.
Despite the confusion about treatment, Buick (1997) notes that there is a high rate of
compliance for treatment, possibly because of the perceived serious consequences of
breast cancer. This compliance is coupled with vast individual differences in
23
psychological adjustment to treatment This suggests an important role for
psychological factors. Differences in psychological response to treatment can be
interpreted by understanding the patient’s perceptions of the disease, and their
understanding of their treatment.
1.8 The Development of Illness Representations
Illness representations do not develop in a social vacuum. Cultural, institutional,
social and personal factors influence the development of illness representations
(Leventhal, Benyamini, Brownlee, Diefenbach, Leventhal, Patrick-Miller and
Robitaille, 1998). Leventhal et al (1984) identified three main sources of information
used by the individual to construct a representation of the illness they are
experiencing.
The first of these sources relates to general information that is available and accepted
within an individual's culture. Leventhal and Benyamini (1997) write that cultural
beliefs and language have an influence on virtually every aspect of illness
representations. For example religious and spiritual beliefs can have a direct influence
on causal representations. This is evidenced by beliefs that attribute disease to
immoral behaviours. Also, the language used to describe an illness may suggest
specific beliefs about that illness, for example, the label for high blood pressure,
hypertension, suggests that physical and mental hyper-activity and tension are both
signs and causes of elevated blood pressure (Leventhal and Benyamini, 1997). On a
wider scale cultural beliefs have helped to shape the medical care system, in what
Leventhal and Benyamini (1997) term a reciprocal relationship. Both the biology of,
24
and beliefs about disease, have shaped and maintained the medical care system.
Western models of health care were created over decades and centuries according to
an acute model of disease, where the experience of bodily symptoms sets up an
expectation of diagnosis, treatment and cure. In turn, this service framework
encourages chronic illnesses to be interpreted and managed according to the same
principles.
The second source of information relates to social communication and information
obtained from direct contact with others. An individual’s illness representations can
be shaped through the sharing of information with people within the individual’s
social network. The family provides the earliest context for the acquisition of
memories and skills for the exploration, labelling and management of symptoms.
Information is also obtained via the media and through contact with healthcare
providers.
The final source relates to the individual’s personal experiences of illness, both at the
present time and in the past. Most people experience numerous minor diseases before
they encounter a major one. These experiences influence the formation of illness
representations. Lau and Hartman (1983) studied these minor or everyday illness
experiences and termed them ‘common sense representations of common illnesses’.
By the time a person encounters a serious illness threat, their illness representations
are well established. As a result when people become sick they try to ‘plug’ their
illness schema into a pre-existing illness schema. However, there may be a lack of fit
with common illness schemas, and this inconsistency may tell the person that they
have a new and more serious disease. This then initiates a search for a new illness
25
schema. This is similar to the process described by Bishop et al (1987) who proposed
the use of illness prototypes through which individual’s seek to match their symptom
experiences. A ‘matching’ process occurs whereby the closer the symptoms an
individual experiences correspond with the symptoms making up that person’s
prototype for a particular disease, the more likely they are to interpret their symptoms
as being indicative of that disease. People are likely to have models from the media,
or from acquaintances who have experienced a serious disease, on which to base then-
new schema or prototype. This illustrates how individuals’ past experience of illness
can negotiate illness representation for future illnesses via the use of illness schemata
or prototypes.
1.9 Relationship between Illness Representations, Coping and Health Locus of
Control
Lazarus and Folkman (1984) defined coping as a person’s constantly changing
cognitive and behavioural efforts to manage specific external and/or internal demands
that are appraised as taxing or exceeding personal resources. Coping theory describes
the process as involving two levels of appraisal. At the primary level, is the process of
perceiving a threat to oneself. Secondary appraisal is the process of bringing to mind a
potential response to the threat. Coping is the process of executing that response.
Embedded in Lazarus and Folkman‘s (1984) conceptualisation is a distinction
between two types of coping. The first is termed problem-focused coping and is
aimed at problem solving or doing something to alter the source of the stress. The
26
second is termed emotion focused coping and is aimed at reducing or managing the
emotional distress that is associated with (or cued by) the situation. Another
conceptualisation is that of approach and avoidance coping - the former involves
active efforts to resolve or master a stressor by seeking guidance or engaging in
problem solving activities. Avoidance coping on the other hand, is a retreat from the
threat, manifesting in terms of avoiding thinking about the stressor or it’s
implications, becoming resigned to the difficult situation or seeking out alternative
rewards (Ebata and Moos, 1991).
It is simplistic to think in strict terms of ‘good’ and ‘bad’ coping styles, as, depending
on circumstances and the changing nature of stressors, different approaches to coping
may be more or less adaptive at certain times. However, the field of coping research
has produced numerous studies showing an association between certain coping styles
and psychological adjustment (Bombardier, D’Amico and Jordan, 1990). The self
regulation model also posits that the representations or beliefs that an individual holds
about an illness will influence the use of coping behaviours. It was felt that it would
be useful to investigate how illness representation components were associated with
coping strategies, and to investigate whether problem-focused coping strategies were
associated with higher levels of breast self-examination.
Locus of control relates to the perceived source of control over ones behaviour. It is
measured along a dimension running from high internal to high external. An internal
person is someone who tends to take responsibility for his own actions and who views
himself as having control over his or her own “destiny”, and an external is someone
who tends to see control as residing elsewhere and attributes success or failure to
27
outside forces.
According to this model, a person is most likely to engage in a health behaviour if he
or she has a strong internal locus of control. Thus, it was anticipated that an internal
locus of control would be associated with a higher level of breast self-examination,
more problem-focused coping strategies and higher cure/ control scores.
1.10 Illness Representations and Breast Cancer
Leventhal and colleagues (1980; 1984) suggest that there can sometimes be a
‘mismatch’ between the different parties involved in an illness experience. Parties
involved in the cancer experience can include doctors, nurses and patients. They may
hold different illness perceptions of cancer. Doctors tend to hold illness
representations based on biomedical conceptualisations of pathology. In contrast, lay
representations of illness are likely to be more diverse and less firmly held
(Fallowfield and Clarke, 1991). They tend to incorporate folk knowledge as well as
medical knowledge derived from personal experience and media sources. Differences
in beliefs shared by the various parties can lead to problems in communication. These
misunderstandings can have detrimental consequences in various areas such as
decision making about treatment, adherence to treatment, acting on medical advice,
and of most relevance to this study, presenting for screening and carrying out BSE.
Often the behaviour of patients may seem at odds with the recommended medical
consensus and may seem irrational, but the patient’s behaviour may be consonant
with their representation of the problem and may therefore be psychologically valid
given their particular illness perceptions. It is therefore important to undertake
28
research, which aims to elucidate illness perceptions in order to work towards
developing appropriately targeted health interventions. This is particularly relevant to
the study of illness beliefs of different ethnic groups, where there may be greater
incongruity between orthodox ‘western’ medical explanations of illness, and those of
the ethnic minority culture.
Various studies have used differing methodologies to investigate the lay beliefs
surrounding breast cancer and to investigate how these influence health behaviours.
There have not been many studies which have utilised the self-regulation model to
look at breast cancer, and as of yet there is very little work which has examined the
specific content of women’s illness representations for breast cancer (Buick, 1997).
Neither has this approach been used to investigate the beliefs of ethnic minority
women, or more specifically South Asian women, regarding breast cancer.
One study, which utilised the self-regulation model approach to look at breast cancer,
was carried out in 1997 by Buick (1997). Buick (1997) utilised the self-regulation
model to investigate the cognitive representations of cancer and it’s treatment for
patients undergoing either adjuvant radiation or chemotherapy treatment for breast
cancer. Although this study looked at women with breast cancer rather than those
contemplating early detection procedures, it nevertheless provides a useful profile of
illness representations for breast cancer. Buick identified two distinct clusters or sets
of beliefs for both radiation and chemotherapy patients. Similar patterns of scores on
particular illness representation components were obtained for both groups of patients.
This profile of scores was termed a ‘negative’ illness cluster. Patients in this cluster
obtained higher mean scores on identity, internal/ self-blame and consequence, and
29
lower scores on cure/ control. Patients in this type of cluster also exhibited more
psychological distress prior and post treatment They were also more likely to report
coping with treatment by venting of emotion, disengagement and restraint coping
responses. Consequently, patients with more negative illness beliefs were deemed to
exhibit less coping flexibility. Buick concluded that negative illness beliefs appeared
to be associated with maladaptive psychological responses.
Leventhal and colleagues’ (1980; 1984) model of illness representation has been used
as a framework to inform two further studies into lay representations of breast cancer,
with implications for BSE. These studies are described here as they provide a further
picture of some of the general aspects of illness representation associated with breast
cancer.
Payne (1990) assessed the lay representations of breast cancer in 268 healthy women.
Interviews were carried out using open-ended questions and rating scales to obtain lay
explanations connected to four categories. These were knowledge, causes, treatment
and breast self-examination. Although these categories do not correspond directly
with the five component self-regulation model there is considerable overlap between
these categories and some of the illness dimensions. Interviewees were classified into
categories of BSE users and non-BSE users according to the frequency of BSE. Payne
found that the pattern of representations was an important factor in mediating the
decision to practise BSE. Regular BSE users were differentiated from others by their
beliefs in the relative success of surgical and psychological treatments. Non BSE
users were generally older, regarded stress as important in breast cancer causation and
had more negative impressions of breast cancer recovery. These variables can be
30
conceptualised as similar to variables on Leventhal’s cure/ control and cause
components.
Savage and Clarke (1998) utilised the illness representation framework to investigate
common sense beliefs and their role in screening decisions for breast and cervical
cancer screening. Relatively unstructured face to face interviews were used to
investigate the identity, cause and cure/ control components of the model. Time-line
and consequences were not investigated. These latter components relate to the
physical, social and economic consequences of a condition and thus the researchers
felt they were more relevant to individuals with an illness, rather than to healthy
individuals contemplating screening. Interviewees were categorised as users and non
users of BSE or in this case screeners and non-screeners. Savage and Clarke (1998)
concluded that the two groups were differentiated on the identity and cure/ control
components, but not on cause. The screeners reported more positive stories of people
who had recovered from breast cancer, and expressed lower fears about treatment.
They also recognised that screening could potentially detect breast cancer before
symptoms became noticeable. The non-screeners had higher levels of anxiety and
fears re the experience of treatment for breast cancer, and reported fewer stories of its
success in treating breast cancer. More of the non-screeners also reported the
necessity of waiting for symptoms to appear before they would consider the risk of
breast cancer. Both groups strongly emphasised familial cause as a causative factor in
breast cancer.
The relationships between illness representation categories reported in the above
studies imply that people use illness schemata as a framework for selecting consonant
31
psychological and behavioural responses to treatment. Consequently, it was
considered useful to investigate patterns of responses on the IPQ with performance of
BSE, and to investigate whether certain profiles of IPQ component relationships
corresponded to hypothetical coping style and locus of control.
1.11 South Asian Culture and Illness Beliefs
PfefFer and Moynihan (1996) state that the investigation of the health beliefs of
minority ethnic groups with respect to cancer has been neglected. It is widely
recognised that health beliefs differ across cultural groups. Beliefs may vary across
subcultures or individuals, but developing prototypes can help inform practitioners
about how culture influences health behaviours. A small body of research has looked
at the illness beliefs of South Asian ethnic groups.
In recent years attempts have been made to outline the central tenets of beliefs relating
to health and illness within South Asian culture. The concepts of bodily balance and
the supernatural in illness have been found to play a role. Uba (1992) investigated the
illness beliefs of South East Asian refugees who were living in Canada, and found
that illness beliefs are inextricably linked with beliefs about life, harmony and energy.
A holistic view of health and illness is taken with the individual seen as responsible
for his or her health (Markland and Turnbull, 1993). Hence, Uba (1992) argues that
western medicine, with its focus on organic causes of illness is often deemed
inappropriate.
Markland and Turnbull (1993) note that much of the multicultural literature on cancer
32
has pointed to a pattern of distrust of western white dominated health care, and
fatalistic beliefs about cancer. This has contributed to frequent late stage presentation
of disease. Hoare (1996) states that the concept of screening may be difficult for
minority ethnic populations to comprehend. Illness may be perceived as a situation in
which symptoms exist, and then treatment is sought. Illness without symptoms may
not be understood.
Johnson et al (1999) undertook research with a group of 50 South Asian women in
Canada, looking specifically at their views on the causes of breast cancer. Johnson et
al (1999) point out that accommodating traditional cultural beliefs becomes more
complex when individuals immigrate to countries where another set of beliefs may
predominate. Consequently, a variety of opinions and confusions were expressed
across the group.
Embedded in the women’s stories of breast cancer were vivid and fear-provoking
images of abnormal growth, often coupled with a fatalistic view of cancer. One set of
beliefs regarding the causes of breast cancer centred around the ways women could
‘bring it upon yourself. This linked a negative lifestyle, often described as a ‘western’
lifestyle, including factors associated with diet, exercise, stress and the environment,
with the development of breast cancer. Many women attributed cancer to being ‘in the
hands of others’, explaining that cancer was caused by careless words, curses or
divine power.
The concept that cancer was caused by careless words related to the idea that women
could intentionally or unintentionally cause cancer in themselves or others by talking
33
about it Just thinking or talking about the word ‘cancer’ could bring the evil spirit in
the form of cancer into your home. Alternatively, being cursed meant that intentional
harm was intended for someone. Deliberate harm could be inflicted through the use of
suraph (words that indicated harm was wished) or through the practice of jadhu
(black magic). Thus other people might cause cancer in someone else by wishing him
or her deliberate harm.
Divine power was viewed to be the most potent cause of disease and source of cure.
The women’s explanations about divine power were reflected in beliefs about the role
of kismet (fate) and karma (deeds in past and present lives). Generally, kismet was
viewed as ‘fate’ and was described as what was divinely written for a person. Breast
cancer was viewed as a ‘disease of fate’, the outcome of which was primarily up to
divine powers. Some women adopted a fatalistic approach to this, stating that the
illness had to be ‘suffered’. Others believed that this fate could be altered through
prayer and recognised that medical care had a role to play. Karma was generally
viewed as a reflection of one’s deeds in past and present lives. One’s life is viewed as
determined by the ‘fruit’ of one’s deeds. People are either paid back or reap benefits.
Breast cancer was linked to mardha karma (bad karma) and was viewed as
recompense for bad deeds.
1.12 South Asian Women and Early Cancer Detection Behaviour
As yet there are no overall statistics on the uptake of screening amongst different
ethnic groups in the UK, but the anecdotal views of many health professionals
working in this area, are that the uptake of breast and cervical screening amongst
34
minority ethnic women is significantly lower than in the ‘white4 population
(Kemohan, 1996; Rajaram and Rashidi, 1999).
Although these low knowledge and uptake rates are tempered by the lower mortality
rates for breast cancer amongst South Asian women, it is predicted that incidence is
likely to rise as these women and subsequent generations become more westernised
(Kemohan, 1996). Research conducted in the USA has found that for immigrant
groups increased length of residence is associated with an increased risk of breast
cancer (Stanford et al, 1995). A sizeable proportion of these deaths is likely to have a
significant preventable component, and so services should be offered on an equitable
basis.
In response to this issue the Department of Health selected the former Yorkshire
Regional Health Authority to co-ordinate a health promotion project to address this
issue (Kemohan, 1996). Kemohan (1996) carried out a comparative study of rates of
screening for breast and cervical cancer amongst three groups of ethnic minority
women in Bradford. The three groups were African-Caribbean, East European and
South Asian in origin. Of the three groups the South Asian group had the lowest level
of awareness about breast cancer and presented with the lowest rates for screening
tests. Other local studies have also identified low rates of knowledge of breast cancer,
practice of breast self-examination and attendance for mammography (Bhakta, 1991;
Hoare et al, 1991). This body of research suggests that there is an association between
low levels of knowledge about breast cancer and low levels of screening and self-
examination.
35
The project of Hiatt, Pasick, Perez-Stable, McPhee, Engelstad, Lee, Sabogal,
D’Onofrio and Stewart (1996) into trends in population growth and cultural diversity
highlights the importance of advancing our knowledge of cultures due to changing
demographics. There are persistent disparities in stage at diagnosis and survival for
breast cancer and cervical cancer among different population subgroups. There has
been a focus on barriers to screening associated with race/ ethnicity, culture and
socio-economic status (Hiatt et al, 1996). The goal is to identify similarities and
differences in knowledge, attitudes, intentions and practices among these groups and
to design, implement and evaluate interventions to increase the use of early cancer
detection practices as it is suggested that differences in survival from breast cancer
and cervical cancer between race/ethnic groups may be largely the result of
differences in screening adherence.
1.13 Summary
The self-regulation model for studying lay beliefs is thought to consist of five
components: identity, time-line, consequences, cause and cure/ controllability. These
components guide an individual’s response to an illness, in particular their coping
efforts. Evidence suggests that illness representations also guide adherence to
treatment and use of services. One of the most powerful factors that influence illness
representations is culture. It is recognised that illness representations differ across
cultural groups. Research indicates that health care interventions stand a better chance
of being effective if they are culturally sensitive and if there is a sense of mutual
understanding regarding illness representations between patient and health care
professional. Little is known about South Asian women’s illness representations about
36
breast cancer. There is evidence that suggests lower than expected participation rates
in screening practices. The rationale for regular screening is to increase the likelihood
of detecting a tumour at the smallest possible size and thereby help to improve
prognosis. This suggests that investigation of how illness representations of breast
cancer held by South Asian women influence their health practices would be useful.
1.14 Description of Study and Research Questions
The present study was a cross-cultural study to investigate illness representations for
breast cancer, locus of control and coping amongst a lay population of South Asian
women settled in England, and any differences on these dimensions when compared
with a White indigenous group. Illness representations were investigated using the
generic five-factor structure self-regulation model. Coping strategies and locus of
control were also examined.
Awareness of breast cancer and early detection behaviour were also compared for the
groups. Relationships were explored between the different components of
illness representations, and their associations with coping, locus of control, and level
of breast self-examination.
The goals of the study can be described as follows:
1. To examine the level of breast cancer awareness and level of early detection
behaviours among the two groups.
2. To describe the illness representations, coping strategies and locus of control used
by the two groups in relation to breast cancer.
37
3. To examine the inter-relationships amongst the illness representation components
within the groups.
4. To examine the relationships between illness representations, coping and locus of
control for the two groups.
5. To examine how illness representations, coping responses and locus of control
relate to levels of BSE for the two groups.
The following research questions were formulated for this purpose:
Research question 1.
Does ethnic group membership influence the level of breast cancer awareness?
Hypothesis 1: It is expected that the SA group will have lower awareness of breast
cancer.
Research question 2.
Does ethnic group membership influence the level of early breast cancer detection
behaviour?
Hypothesis 2: It is expected that the SA group will undertake less screening
behaviour.
Research question 3.
What illness representations of breast cancer exist amongst the two groups?
38
Research question 4.
In what ways are the different illness representation components for breast cancer
inter-related for the two groups?
Research question 5.
What coping strategies and locus of control exist for the two groups?
Research question 6.
Are the breast cancer illness representations held by participants related to any of the
COPE subscales or MHLC subscales?
Hypothesis 3 : It is anticipated that higher scores on consequences and lower scores on
cure/ control will be associated with more emotion-focused coping and
disengagement.
Research question 7.
What are the relationships between illness representation, coping responses and locus
of control with level of breast self-examination?
Hypothesis 4: It is anticipated that higher scores on cure/ control and risk/ treatment
39
components will be associated with higher levels of BSE.
Hypothesis 5: It is anticipated that higher levels of problem focused coping will be
associated with higher levels of BSE.
Hypothesis 6: It is anticipated that higher scores on internal locus of control will be
associated with higher levels of BSE.
40
2.0 METHOD
2.1 Design
The present study adopted a cross-cultural two-group comparison design: a White
indigenous group (W group) consisting of 18 women; and a South Asian group (SA
group) consisting of 17 women. The total sample consisted of 35 women. Group was
the independent variable. Dependent variables included: questions relating to early
cancer detection behaviour; the Illness Perception Questionnaire (IPQ) (Weinman,
Petrie, Moss-Morris and Home, 1996); the COPE scale (Carver, Scheier and
Weintraub, 1989); and the Multidimensional Health Locus of Control Scale (MHLC,
Wallston, Wallston and De Vellis, 1978). Between-group comparisons were made on
these dependent variables. Both groups were administered the same battery of
questionnaires, in the same order.
It is recognised that illness representations may differ for the same disease according
to whether individuals are diagnosed or illness free. Illness representations may also
change over time according to length of diagnosis (Fallowfield and Clarke, 1991;
Savage and Clarke, 1998). A non-clinical sample of women was used as this study
aimed to identify illness representations for breast cancer for women who were
diagnosis free. Identifying the illness representations for breast cancer at this stage
was most pertinent to the design, as the rationale for this study was to contribute to
knowledge for clinicians involved in giving information and advice to women
considering screening, or to those women newly diagnosed with breast cancer, when
it would be the beliefs and attitudes that the women bring with them from the past that
would need to be taken into account.
41
2.2 Participants
The 35 women were drawn from a non-clinical sample. The sample size was based
upon the number of women recruited within the available time frame. Matching the
two groups for age and education was not specifically controlled for as there were
difficulties recruiting for the South Asian group. The women were between the ages
of 22 to 59 years.
Respondents were recruited from local women’s groups and evening classes within
Leicester, attended predominantly by women. Details of local women’s groups and
evening classes were obtained from Leicester City Central Library Database. A
breakdown of recruitment sources is presented in Table 1.
Table 1. Recruitment Sources
Recruitment Source W Group n = 18 SA Group n = 17
Turning Point Women’s Centre 10Saffron Lane Women’s Centre 5Yoga Group at Fullhurst Community College 3
Personal/ work Contacts (including 3 returned by post) 14
Sharma Women’s Centre (including 3 returned by post) 3
Participants were allocated to a White indigenous group (W) and a South Asian group
(SA) according to their answers to questions relating to their ethnicity. Respondents
were asked to describe their ethnic background in response to a six-item multiple
choice question. Categories included. White European, Affo-Caribbean, Pakistani,
Indian, Bangladeshi and ‘other’. An open-ended question asked respondents to
42
indicate their country of birth. The White indigenous group consisted of 18
respondents, all of whom described themselves as White European and gave England
as their country of birth. Within the South Asian group: 7 respondents described India
as their country of birth; 9 were bom in England; and 1 respondent was bom in
Kenya. All respondents in the South Asian group described their ethnic background as
Indian.
Further details of the sample are discussed in the results section.
2.3 Measures
2.3.1 Background Questionnaire (Appendix A)
The researcher developed a background questionnaire. This contained questions
concerning the socio demographic background of respondents, questions relating to
early breast cancer detection behaviour, and level of awareness of breast cancer. Socio
demographic questions related to general categories such as age, employment status,
country of birth, religious affiliation and self-rated ethnicity.
Details regarding self-rated ethnicity, influence of ethnicity and country of birth were
used to place participants in appropriate groups for analysis. Respondents were asked
to indicate the main language spoken at home and their level of education. A good
level of written English was required to complete the questionnaires and some of the
concepts contained within them were quite academic in nature. Some respondents
may have found them complicated to complete, and first language may have had some
influence on their responses.
43
Questions 15 to 16b inclusive aimed to explore respondents’ experiences of and
exposure to, possible breast disease and breast cancer, either in personal terms or
through relatives or friends. These questions were asked to explore issues relating to
how participants had gained their awareness of breast cancer.
Questions 17 to 19 inclusive asked questions pertaining to early breast cancer
detection practices. Questions were a mixture of open ended and multiple choice
formats. Breast screening behaviour was measured by questions relating to breast self-
examination, mammogram and clinical breast examination.
2.3.2 The Illness Perception Questionnaire - IPQ (Weinman et al, 1996).
(Appendix B).
The Illness Perception Questionnaire was used to assess participants’ illness
representations for breast cancer. This questionnaire was titled ‘your views about
breast cancer’. The questionnaire is based upon Leventhal et al’s (1980; 1984)
cognitive model of illness representations. It comprises five scales consisting of
theoretically derived test items, designed to assess each of the five components of
illness perceptions.
The IPQ was specifically designed for use with individuals experiencing a chronic
illness. The questionnaire was developed using seven different illness groups. These
were: diabetes; rheumatoid arthritis; renal and asthma patients; chronic fatigue
syndrome patients; myocardial infarction and chronic pain patients. Data from these
seven illness groups provide data for evaluating the psychometric properties of the
44
scale. Acceptable test-retest reliability and concurrent and discriminant validity were
obtained across a range of these illness groups (Weinman et al, 1996). The IPQ
consists of a number of theoretically derived core items but Weinman et al (1996)
advocate that researchers can tailor the scale to specific illnesses. Accordingly, for the
purposes of this study, the scale was modified to fit with breast cancer. The adapted
version of the IPQ is given in Appendix B.
The IPQ was selected as the method for evaluating illness representations in this study
for the following reasons. The IPQ was designed for chronic diseases, thus making it
applicable to a disease like breast cancer, which has serious and sometimes fatal
implications. The IPQ has also demonstrated reasonable reliability and validity. Other
measures for assessing illness representations have been developed such as the
Implicit Model of Illness Questionnaire (IMIQ) developed by Turk and Salovey
(1986). However this measure and others have not been as widely evaluated. There is
also debate as to the extent the IMIQ is consistent with the self-regulation model.
Past research studies of breast cancer have used interviews to investigate illness
representations of breast cancer. Buick (1997) investigated the illness representations
of patients with breast cancer, and Payne (1990) investigated the illness
representations of breast cancer amongst a group of healthy women. Aspects of these
studies were based on the IPQ format. This study looked at illness representations of
cancer from a different perspective (healthy women in a cross-cultural comparative
design), but adopting a similar format meant that findings could be further built on.
The first section of the IPQ is the identity scale. This consists of a list of 12 core
45
symptom items that the respondent is asked to rate along a four point scale ranging
from “all of the time” to “never”, according to how often respondents believe the
symptom is experienced as part of the illness. The researcher modified the identity
scale to include a range of symptoms typical of breast cancer. These ‘typical’
symptoms of breast cancer were generated after a review of the literature, including
leaflets about breast screening provided by the Cancer Research Campaign (Cancer
Research Campaign, 2000).
The symptoms were defined as follows: breast lumps, pain in the breast area, changes
in the nipple, discharge from the nipple, inflammation of the breast, puckering or
dimpling of the breast skin and changes in sensation in the breast. Five symptoms
from the original core list were included, these being pain, nausea, fatigue, sleep
difficulties, and loss of strength. This made a total of twelve items.
The identity scale is scored by summing the number of items endorsed at
“occasionally” or greater, so that in this study, total scores ranged from 0 to 12. This
provides a measure of the number of symptoms perceived to be associated with breast
cancer. The internal consistency of the adapted breast cancer scale was assessed using
Cronbach’s alpha, which yielded a coefficient of 0.86, indicating a high level of
internal consistency.
The second section of the IPQ relates to the 4 other illness components. These are
cause (10 item scale; items 1 to 10), time-line (3 items; items 11 to 13), consequences
(7 items; items 14-20), and cure/controllability (6 items; items 21to 26).
46
One aim of the study was to identify illness representations about breast cancer in
order to contribute to information geared to improve uptake rates of breast cancer
screening, and treatment uptake following diagnosis of breast cancer. It was
considered important to ask questions relating to women’s knowledge or
misconception about risk factors and treatment factors associated with breast cancer,
as these are important factors associated with uptake and non uptake of screening
(Savage and Clarke, 1998; Buick, 1997). Therefore in addition to the five illness
perception components the researcher included a risk/ treatment scale in the same
format. This risk/ treatment scale comprised 14 items (items 27 to 40). These items
aimed to assess the respondent’s knowledge of risk factors and treatment options
associated with breast cancer. The researcher generated items for this scale after
reviewing the literature connected to breast cancer information provided by the
Cancer Research Campaign (e.g. Baum and Schipper, 1998; Cancer Research
Campaign, 2000). Following this, and taking into account the format of the IPQ
questionnaire, the most frequently discussed risk factors and treatments were
described to provide items for the risk/ treatment scale.
Risk factor items related to: age; age at onset of periods; age at conception of first
child; long term use of contraception pill; long term use of hormone replacement
therapy; type of employment; living area; and ethnic origin. Treatment items related
to: surgery; radiotherapy and chemotherapy.
Respondents were asked to rate items on these scales along a five-point scale ranging
from "strongly disagree” to "strongly agree” (scored 1 to 5). Items 11,16, 17, 23, and
25 aie reverse scored. Total scores for the time-line, consequences, cure/ control
scales, and the additional risk/ treatment scales, are obtained by summing all the scale
items and dividing the sum by the number of items per scale, resulting in a range from
1 to 5.
Higher scores on time-line indicate that individuals believe that their illness will last
for a long time. Higher scores on consequences suggest that they believe the illness
has a profound impact on their lives, and high scores on the cure/ control scale
suggest that they perceive that individuals have greater control over their illness or
that there is a likely cure. A higher score on the risk/ treatment scale was believed to
indicate a higher level of knowledge about risk factors and treatment options.
Internal reliability for the time-line, consequences, cure/ control and risk/ treatment
scales for the present study were calculated using Cronbach’s alpha and are presented
in Table 2 below. The alpha coefficients reported by Weinman et al (1996) are also
included for comparison. A modest level of internal consistency was obtained for the
consequences component and a high level was obtained for the risk/ treatment scale.
Rates for cure/ control and time-line were lower suggesting that there was not much
consistency in scores on these two scales.
48
Table 2. Internal Consistency Scores (Cronbach’s Alpha) for IPQ Scales. Present
Study and Weinman et al Study (1996).
Scale Present study Weinman et al
Time-line .22 .73
Consequences .62 .82
Cure/ Controllability .42 .73
Risk/ Treatment .88 n/a
An overall total score is not calculated for the cause scale of the IPQ, because each
item represents a specific causal belief and thus, a single score would be meaningless.
However, Weinman et al (1996) suggest that for specific research purposes, items can
be combined into sub categories such as internal, external and chance categories. In
the present study it was decided to divide the cause scale into three categories:
external (items 1,2 and 3); internal (items 6,7,8, and 10); and chance (items 4, 5 and
9). Total scores for these factors were calculated by summing the items and dividing
the sum by the number of items per category. Scores ranged from 1 to 5.
23 3 COPE Inventory (Appendix C)
The COPE scale is a multidimensional coping inventory developed by Carver et al
(1989). It consists of 15 conceptually distinct scales (4 items each) which were
developed on theoretical grounds to assess the different ways in which people respond
to ‘stress’. The measure has been widely used to measure the coping strategies of
people with illness. It has demonstrated satisfactory internal consistency, test-retest
reliability and concurrent validity in three separate studies (Carver et al, 1989). This
49
scale was also adapted for use in this study. A copy of the adapted questionnaire
entitled “Questionnaire 3” can be found in Appendix C.
Thirteen scales considered to be most appropriate for chronic illness were used in this
study: five assess aspects of problem-focused coping (active coping, planning,
suppression of competing activities, restraint coping, seeking of instrumental social
support); five assess emotion-focused coping (seeking of emotional support, positive
reinterpretation and growth, acceptance, denial, turning to religion); and three assess
other coping strategies (focus on and venting of emotion, mental disengagement and
behavioural disengagement). The two subscales excluded were ‘alcohol-drug
disengagement4 and ‘humour*. As treatment of breast cancer often includes a drug
regimen the alcohol-drug subscale was considered inappropriate, and the humour
subscale has low reliability.
In the original version of the questionnaire respondents are asked to rate items along a
range 1 to 4 where: “1 = I usually don’t do this at all”; and “4 = I usually do this a
lot”. For the purposes of this study, participants were asked to respond to the scale
items hypothetically, as if they had breast cancer or thought that they might have
breast cancer. Therefore the statements pertaining to the rating scales were changed to
a range where: 1 = “I would not do this at all”; to 4 = “I would do this most of all”.
Scores for each scale are computed by adding the scores on the 4 items that
correspond to each scale. The mean scores for each scale indicate the extent to which
each type of coping strategy is used.
The explanatory statement at the beginning of the scale was also modified. It was
50
shortened and adapted to fit a breast cancer scenario. The amended statement read as
follows:
“ If you were experiencing breast cancer, or thought that you might have breast cancer
what would you do? There may be many things people do to help them deal with an
illness such as breast cancer, but I am interested in what YOU would do. Make your
responses as true for you as you can - not what you think ‘most people’ would say or
do. Treat each item separately from every other item, and answer every item. There
are no right or wrong answers”.
2.3.4 Multidimensional Health Locus of Control Scale (MHLC) (Appendix D)
A copy of the questionnaire, entitled “Questionnaire 4” can be found in Appendix D.
The Multidimensional Health Locus of Control Scale was designed by Wallston et al
(1978). It provides measures of three dimensions of health locus of control. These are:
intemality (IHLC) (items 1,6, 8,12,13 and 17); chance (CHIC) (items 2 ,4,9 ,11, 15
and 16); and powerful others (PHLC) (items 3, 5, 7, 10, 14 and 18). The scale was
developed along theoretical grounds, to measure perceived control with regard to
health-related cognitions.
The scales are widely used, and have demonstrated good internal consistency, and
good correlations between the MHLC scales and the appropriate scales of Levenson’s
Multidimensional Locus of Control Scale (Levenson, 1973). This is another
theoretically based measure of beliefs regarding perceived control, related to more
general cognitions.
51
In all there are 18 items and respondents are asked to respond to items along a six-
point Likert-type scale ranging from “1 = strongly disagree” to “6 = strongly agree”.
Wallston et al (1978) developed two equivalent versions of the scale in order to
provide repeated measures of these beliefs, however as the measures were only
administered once in this study, version A was used Separate scores are obtained for
each of the three subscales by adding the respondent's score on the six items that
comprise the subscale. The scoring range on each subscale ranges from 6 to 36. The
score on each subscale indicates how strongly the individual believes in each
dimension of control, with the higher the score the stronger the belief.
2.4 Procedure)
The investigator contacted a named person for each group by telephone. Following an
initial telephone conversation outlining the nature of the study, a standard letter
outlining the study in detail (see appendix E), and a sample of the questionnaire were
sent to the contact name. The contact name then approached potential respondents
who, if willing to take part, were then requested to sign consent forms (Appendix F).
In the case of the South Asian group, locating individuals who felt sufficiently
proficient in English to answer an English language questionnaire proved difficult.
This led to personal and work contacts being asked to help recruit participants from
their own circles. This technique is known as snowballing (Fife-Schaw, 1995).
In the case of the W sample, arrangements were made for the researcher to attend a
meeting at the various locations, where the respondents completed the questionnaires.
For the SA sample, meetings were set up for the interviewer to go to private homes
52
with the named contact person also present, except for six cases where questionnaires
were returned by post The questionnaires were designed to be self-report
questionnaires but, with the exception of the postal questionnaires, the researcher
remained on hand to help answer any questions and to check for missing or
incomplete information. For the SA sample the contact name person was also present
in order to help answer any questions relating to language problems. The battery of
tests took approximately 30 to 45 minutes to complete.
Respondents were asked to provide a telephone number and address in the event of
responses being unclear or incomplete. Names were then changed to numbers to
ensure anonymity. Three respondents were followed up by telephone, in order to
obtain missing information. Three questionnaires were omitted from the study
altogether due to a high amount of missing data which could not be followed up.
53
3.0 RESULTS
3.1 Methods of Analysis
In order to determine whether parametric or non-parametric statistics were appropriate
for the statistical analysis, the data was first examined to see if it met the necessary
criteria. The criteria for parametric analysis are that the data must be interval
(continual), should be drawn from a population that is normally distributed, and that
the variances of variables are homogenous (Bryman and Kramer, 1997).
Preliminary analysis of measures and subscales using stem and leaf displays and box
plots showed a number of skewed distributions both in the negative and positive
directions. In order to investigate whether the data obtained met the requirements for
parametric tests, Kolgorov-smimoff tests for normal distribution, and Levene tests of
homogeneity of variance, were carried out on the dependent variables. These tests
revealed that the data did not meet the necessary conditions required for parametric
analysis. Therefore non-parametric statistics were used for this study.
Chi-square analysis of frequency distribution and Fisher's exact test were performed
on the categorical data from variables relating to demographic information, level of
early detection behaviour and awareness of breast cancer. This was done to ascertain
whether the frequency distribution on these categorical variables differed for the two
groups. The differences between the two groups on non-categorical data obtained on
the subscales of the IPQ, COPE and MHLC were analyzed with Mann-Whitney U
tests. Spearman’s rho correlations were carried out to explore the relationships
between the components of the IPQ. Spearman’s rho correlations were also performed
54
on the IPQ components, and the subscales of the COPE and MHLC to examine their
associations with level of breast self-examination.
3.2 Research findings
3.2.1 Sample Characteristics
The White group consisted of 18 women and the South Asian group consisted of 17
women. The two groups were broadly comparable in age. The ages of the W group
ranged from 25 to 51 years with a mean of 33 years and 9 months (SD = 6.87). The
ages of the SA group ranged from 21 to 59 years with a mean of 34 years and eight
months (SD = 11.02). Differences between the two groups on age were analyzed with
a Mann-Whitney U for two unrelated samples. The Mann-Whitney U indicated that
the two groups did not differ significantly in age (U = 137.50, non-significant).
With regard to religion 61.1% of participants in the White group described their
religious background as Christian and 38.9% described themselves as ‘not religious’.
In the South Asian group, 70.6% described themselves as Hindu, and 29.4% described
themselves as Sikh. Within the W group, all respondents indicated English as the
main language. Within the SA group, 6 respondents indicated English, 3 indicated
Punjabi, 1 indicated Hindi, 4 indicated Gujurati and 3 indicated the ‘other’ category,
which was described as English and Gujurati.
Chi-squares were performed on the sample characteristic variables. Findings are
presented in Table 3 below.
55
Table 3, Summary of Information relating to Sample Characteristics - Both Groups
(from Background Questionnaire)
w SAVariable Group Group Test df Significance
ft = 18 n = 17Number employed 11 13 x2=.96 l nsNumber with Englishas main language Number with further education (coliege education and above)Number who rate strong influence of ethnic background {quite a bit/ a lot)
18 7 *2 = 6.38 i ns
11 12 *2 = .35 1 ns
15 *2 = 9.12 1 p < .01
Chi-squares indicated that the groups were significantly different on influence of
ethnic background. There were no significant differences in terms of employment and
educational status.
The South Asian group proved to be a relatively heterogeneous sample in terms of:
Rngiich as a first language; self-described religious background; and immigrant status
to the UK. The sample also differed according to whether questionnaires were
completed in person or by post In order to judge the effects of this heterogeneity the
South Asian group was further broken down into sub groups relating to: main
language spoken at home; religious category; immigrant status to UK; and postal
versus non-postal data. Frequency data for the sub groups within the South Asian
sample are presented in Table 4 for comparison purposes.
56
Table 4. Summary of Information relating to Sample Characteristics for Sub Groups
within South Asian Group
Sub group Category% employed
in some way
% with higher
education or more
% rate ethnic background
to influence them a lot/ quite a bit
English as main language
(n -7 )85.7% 85.7% 71.4%
English as 2nd language
(n = 10)70.0% 60.0% 100.0%
Hindu (n = 12) 83.3% 58.3% 91.7%
Sikh (n = 5) 60.0% 100.0% 80.0%
UK Bom (n =9) 77.8% 88.9% 77.8%
Immigrant to UK ( n = 8) 75.0% 50.0% 100.0%
Postal (n = 6) 83.3% 66.6% 83.3%
Non Postal (n = 11) 81.8% 72.7% 90.9%
Although the SA group was relatively heterogeneous, the sample characteristics of the
various sub groups were deemed broadly comparable. Consequently for further
statistical analysis purposes it was felt that the SA group could be treated as one
overall group.
57
3.2.2 Ethnic Group and Level of Breast Cancer Awareness
Research Question 1. Does ethnic group membership influence the level of breast
cancer awareness?
Hypothesis 1: It is expected that the SA group will have lower awareness of
breast cancer.
This was measured by questions 15 to 17b inclusive of the background questionnaire.
Four members of the W group and six members of the SA group indicated that they
were aware of a friend or family member who had developed breast cancer. One
woman in the W group had had personal experience of breast cancer versus two
women in the SA group. In response to the question regarding whether any of the
women had thought that they might have breast cancer, two women in the W group
indicated yes and three women in the SA group indicated yes. The two groups thus
had broadly comparable levels of awareness of breast cancer and hypothesis 1 was not
supported.
3.13 Ethnic Group and Level of Early Cancer Detection Behaviour
Research Question 2. Does ethnic group membership influence the level of early
detection behaviour?
Hypothesis 2: It is expected that the SA group will undertake less early detection
behaviour.
This was measured by questions 18 to 21 of the background questionnaire. Findings
are presented in Table 6 below. Chi-square tests of association were carried out on the
58
variables.
Table 6. Summary of Information relating to Early Detection Behaviour
VariableWGroup n = 18
SAGroup n * 17
Test df Significance(1-taiied)
Number who report BSE once a year or more
9 8 %2 = .030 1 ns
Number who have had a mammogram 1 3 Fisher 1 ns
Number who have had a clinical breast examination
7 5 %2 = .349 1 ns
Number who accept mammogram if offered
1 3 Fisher 1 ns
No significant differences between groups were found on any of the variables.
Between group differences were not significant, hence, hypotheses 2 was not
supported.
3.2.4. Ethnic Group and Illness Representations
Research question 3. What illness representations of breast cancer exist amongst
the two groups?
Illness representations were measured by the IPQ. Mean and median scores for each
of the IPQ components are presented in Table 7. For the cause dimension, scores were
calculated on the three subcategories: external cause, internal cause and chance.
59
Table 7. Median Scores and Inter Quartile Ranges for each of the IPQ Components
by Ethnic Group.
Component
WGfcoupnmedian
(mean)
= 18 inter quartile range (SD)
SA group n = 17 median
(mean)
interquartilerange(SD)
Iden&y (range 0 to 12) 11.50 8.75 -12.00 11.00 10.00-11.50
(9.94) (3.08) (10.18) (2.09)
Time-fine 3.67 3.00-4.00 3.33 3.00 - 4.00(range 1 to 5) (3.59) (0.55) (3.55) (0.63)Consequences 3.86 3.57-4.21 3.71 3.21 - 4.00(range 1 to 5) (3.82) (0.63) (3.67) (0.43)
External Cause 2.67 2.00-3.67 3.00 2.17-3.33(range 1 to 5) (2.80) (.93) (2.80) (.60)
Internal Cause 2.25 1.5-3.00 2.50 2.25 - 2.62(range 1 to 5) (2.30) (86) (2.47) (.55)
Chance 3.00 2.67-3.33 3.00 2.67 - 3.50(range 1 to 5) (3.02) (.46) (3.12) (.39)
Cure/control 3.33 2.83-3.67 3.33 3.00 - 3.67(range 1 to 5) (3.32) (0.54) (3.30) (0-43)
Risk/ treatment 3.18 2.79-3.38 3.21 3.07 - 3.36(range 1 to 5) (3.13) (0-42) (3.17) (0-31)
The differences between the two groups on time-line, consequence, cure/ control, risk/
treatment and the three cause factors were analyzed with Mann-Whitney U tests.
Mann-Whitney U tests indicated no significant differences between the two groups on
die IPQ components tested (time-line U = 147.00, ns; consequences U = 116.50, ns;
care/ control U = 143.50, ns; external cause U = 144.00, ns; internal cause U =
134.00, ns; chance U = 138.00, ns; risk/ treatment U = 138.00, ns). Identity was not
tested in this way because it was treated as a nominal measure. The SA group did not
score significantly higher or lower than the W group on any of these components.
60
As the identity component was treated as nominal (endorsed/ not endorsed), and as
there were low observed frequencies in many of the cells, Fisher’s exact test was used
to analyze difference for each category of data. This revealed that there were no
significant differences between any of the identity subscale variables for the two
groups.
The identity score for both groups shows that participants had a strong illness identity
for breast cancer. Scores for time-line, consequences, cure/ controllability and risk/
treatment were all moderately high. This shows that participants in both groups held a
chronic view of breast cancer and considered it to have serious consequences for their
lives. The score on cure/ control suggests that participants believed that individuals
have a limited amount of control over breast cancer and that cure for breast cancer
exists to a limited extent. The risk/ treatment score suggests that participants had a
moderate knowledge of risk factors and treatment. Scores on the external, internal and
chance categories suggested that overall the participants did not consider these
categories to be important in the development of breast cancer.
Although there was no significant between group differences on the Identity
component, visual inspection of the data was carried out. The IPQ identity scale was
further analyzed to determine the percentage of participants who identified certain
symptoms as forming part of the breast cancer experience. Percentages are presented
in Figures 1 and 2 below.
Visual inspection shows that all of the symptoms were identified by a substantial
proportion of the participants as being associated with breast cancer. The most
61
commonly identified symptoms for the white group were pain, breast pain, puckering
and change in sensation (all 94.4%). The most commonly identified symptoms for the
South Asian group were breast lumps, breast pain, breast inflammation and puckering
(all 100%). The least commonly identified symptom for both groups were sleep (W
group = 66.7%; SA group = 64.7%), followed by strength and nipple discharge for the
W group (both 72.2%), and strength for the SA group (70.6%).
62
Perc
enta
ge
of Pa
rtic
ipan
ts
I
Symptoms
Figure 1. Symptoms of Breast Cancer as described by White Group63
Symptoms
Figure 2. Symptoms of Breast Cancer as described by South Asian Group64
Figures 3 and 4 overleaf illustrate the percentages of participants that reported each of
the IPQ causes as contributing to the onset of breast cancer.
Hereditary factors were seen as the most common cause in both groups by a relatively
large margin (77.8% W group; 88.2% SA group). For the W group this was followed
by pollution 44.4%, diet 38.9%, chance 33.3%. For the SA group hereditary was
followed by chance 47.1%, stress and diet, both 29.4%, and pollution 23.5%. The
lowest reported causes for the W group were own behaviour, other people and past
medical care (all 5.6%). The lowest reported causes for the SA group were past
medical care (5.9%), own behaviour and other people (both 0%) which were not
considered causal by any of the respondents. Although the differences were not
significant the White group emphasized causes associated with the external cause
category slightly more (germ and diet), and the South Asian group emphasized causes
associated with the chance category more (chance and stress).
65
Perc
enta
ge
of Pa
rtic
ipan
ts100
90 -
80
Diet Pollution Hereditary Chance Stress Own Other people Past Medical State ofBehaviour Care Mind
Causes
Figure 3. Causal Beliefs of Breast Cancer as described by the White Group66
Perc
enta
ge
of Pa
rtici
pant
s100
80 -
70 -
60 -
50 -
40 -
30 -
20
Germ
i. a - ' I*f ' !
Vi '11 , {'\ ' J' I1
1, ’sir * ^
h \ '?
I '1i ̂?% KjI «,,!
i i i i rn i ............................................. i— — — — .................... r
Diet Pollution Hereditary Chance Stress Own Other People Past Medical State of MindBehaviour Care
Causes
Figure 4. Causal Beliefs of Breast Cancer as described by the South Asian Group67
3.2.5 inter-relationships Between the Different Breast Cancer Illness
Representation Components for the Ethnic Groups.
Research Question 4. In what ways are the different illness representation
components for breast cancer inter-related for the two groups?
The inter-correlations among the illness representation components were calculated
using Spearman’s iho correlations and are shown in Table 8 for the White group and
in Table 9 for the South Asian group.
Only one significant inter-correlation was obtained for the W group. This was
between identity and chance. A stronger identity score for the W group was associated
with a stronger emphasis on chance causes. A significant positive correlation was
found between identity and external cause for the SA group. There were significant
negative correlations between identity and cure/ control, and between time-line and
internal cause. Thus a stronger identity score was associated with a greater emphasis
on the causality of external factors, and with a lower belief in cure and control for the
SA group. Inter-correlations amongst the remaining illness representation components
failed to reach significance whether at the p < 0.01 or the p < 0.05 level.
68
Table 8. Inter-correlations among the IPQ Components for the White group (n = 18)
Identity Time-line Consequences Externalcause
Internalcause Chance
Cure/
ControllabilityIdentity
Time-line .145 p = .565
Consequences .143p = .572
.220 p = .380
External cause .157 p = .535
.166 p = .510
-.309p = .212
Internalcause
.329p=.182
-.268 p = .283
-.141 p = .576
.388p = .112
Chance .473* p = .047
.345p = .161
.280 p = .260
.059 p = .815
-.017 p = .947
Cure/Controllability .299
p = .228.079 p = .757
.194 p= 441
-.167 p = .507
-.105 p = .678
.246 p = .326
Risk/treatment .408
p = .092 I' £
© 00
-.146 p = .562
.390 p = .109
.273 p = .273
.064p = .800
.356 p = .147
* p <0.05, **p<0.01
69
Table 9. Inter-correlations among the IPQ Components for the South Asian group (n = 17)
Identity Time-line ConsequencesExternalcause
Internalcause Chance
Cure/
ControllabilityIdentity
Time-line .060 p = .820
Consequences -.108 p = .681
-.094 p = .720
External cause .587* p = .013
-.006 p = .981
-.231 p - .373
Internalcause
-.107 p = .683
-.573*p = .016
.425 p = .089
.034 p = .898
Chance .143p = .585
.021p = .935
.286 p = .265
-.086 p = .742
.060 p = .819
Cure/controllability -.533*
p = .027.117p=.656
.337p=. 186
-.338 p = .185
.141p = .590
-.414 p = .098
Risk/treatment -.056
p = .830.073 p = .781
.004 p = .987
.322p = .208
.218 p = .400
-.121 p = .644
.281p = .275
* p <0.05, **p<0.01
70
3.2.6 Coping Strategies and Locus of Control for the Ethnic Groups
Research Question 5. What coping strategies and locus of control exist for the
two groups?
Respondents were asked to consider which coping strategies they would use if they
were experiencing breast cancer or thought that they might have breast cancer.
Differences in coping behaviour were measured using the COPE. Data for this is
presented in Table 10. Differences between the two groups were analyzed using the
Mann-Whitney U test.
71
Table 10. Median Scores and Inter Quartile Ranges on the COPE Scale by Ethnic Group__________________ ____________________ ______
White group Median
(mean)
n = 18inter quartile
Range (SD)
South group Median
(mean)
n = 17 inter quartile
Range (SD)
COPE ScaleProblem-focusedcoping
Active coping 10.50(10.33)
8.00-13.00(2.47)
10.00(9.88)
9.00-11.00(1.41)
Pfanrwjg 11.00(10.61)
9.00-13.00(2.79)
10.00(10.41)
9.00-11.00(2.29)
Suppression ofcompetingactivities
9.50(9.72)
8.75-11.00(1.71)
9.00(9.00)
8.00-10.00(1.80)
Restraint coping 8,00(9.22)
8.00-11.00(2.21)
8.00(8.76)
7.00-10.00(2.39)
Soda! support 12.00(10.83)
7.00-14.00(3.42)
12.00(11.53)
10.00-14.00(3.00)
Emotion-focusedcoping
Emotional support* 12.00(11.06)
7.75-13.25(3.44)
14.00(13.29)
12.50-15.00(2.73)
Reinterpretation and growth
12.00(10.94)
8.75-14.00(3.51)
10.00(10.53)
10.00-11.50(1.37)
Acceptance* 11.00(10.78)
9.00-12.00(2.44)
10.00(9.53)
8.50-10.00(1.18)
Denial* 8.50(8.17)
5.00-11.00(2.90)
5.00(6.18)
4.00-7.50(2.24)
Reigion** 4.00(5.94)
4.00-8.50(3.10)
12.00(11.18)
6.50-16.00(4.77)
Other coping
Venting emotion10.50(10.83)
9.00-13.50(2.73) 11.00
(11.59)9.00-15.00(3.12)
Mentaldsengagement
9.50(8.89)
7.75-10.00(1.84)
8.00(8.24)
7.00-9.00(1.20)
Behaviouraldsengagement
8.00(7.61)
5.75-10.00(2.43)
6.00(6.71)
5.50-7.50(1.69)
72
Mann-Whitney U tests indicated significant differences on 4 of the COPE subscales.
These subscales were: seeking of emotional support (U = 81.50, p = .017); turning to
religion (U = 52.00, p = .001); acceptance (U = 93.00, p = .044) and denial (U =
90.50, p = .037). Scores were significantly higher for the white group on acceptance,
and denial. The scores for the SA group were significantly higher for emotional
support asd turning to religion. All of these subscales assess aspects of emotion-
focused coping.
Both groups relied heavily on emotional support, and social support. The SA group
used turning to religion heavily, whereas this was the least used mechanism for the W
group.
(Median and inter quartile ranges for the MHLC scale by ethnic group are presented in
Table 11 below.
Table 11. Median and Inter Quartile Ranges for MHLC Scale by Ethnic Group
MHLC Scale
White group Median
(Mean)
n = 18 Inter quartSe range (SD)
South Asian group n = 17 Median inter
quartilerange
(mean) (SD)
li&emaity 23.00(2Z61)
19.75-26.00(4.27)
24.00(23.53)
23.00-25.00(2.48)
Chance 20.00(19.44)
15.00-23.00(5.29)
20.00(21.65)
19.50-23.00(3.72)
Powerful other 18.50(1733)
13.25-20.25(5.02)
19.00(18.82)
15.00-22.00(4.20)
73
Mama-Whitney U tests did not reveal any significant differences between groups on
the MHLC subscales. Both groups obtained highest scores for internal locus of
control, followed by chance and powerful other.
3.2.7. Inter-correlation between IPQ Components and COPE Subscales and IPQ
Components and MHLC Subscales for Ethnic Group.
Research question 6. Are the breast cancer illness representations held by
participants related to any of the COPE subscales or MHLC subscales?
Hypothesis 3: It is anticipated that higher scores on cure/ control and risk/
treatment would be associated with more active problem-focused coping, such as
active coping, planning and seeking support, and a higher score on internal locus
of control.
Tables for the inter-correlations between the IPQ components and the COPE
subscales are presented in Appendix H for the W group, and Appendix I for the SA
group. Inter-correlations between the IPQ components and the MHLC subscales for
both groups are presented in Appendix J.
For the White group a positive significant correlation was found for consequences
with acceptance (r2 =.587, p<05). A negative correlation was found for internal cause
and restraint coping (r2 =-.646, p<.01). No significant associations were found
between any of the other IPQ components with the COPE subscales for the W group.
74
The analysis for the South Asian group revealed positive significant correlations on
chance and restraint coping (r2 = .624, p<.01). Negative correlations were found on
internal cause and planning (r2 =-.600, p< 05); cure/ control with acceptance (r2 = -
.649, p<.01); cure-control and venting emotion (f = -.563, p<.05); and risk/ treatment
with denial (r2 =-.627, p<.01).
There were no significant correlations between any of the IPQ variables and any of
the MHLC subscales for the W group. A significant negative correlation was found
in the SA group for time-line and chance ( r2 = -.619, p< .01). Positive correlations
were found between internal cause and internal locus of control (p = .662, p <. 01),
and internal cause and chance ( r2 = .573, p<05).
3.2.8 Relationships Between Illness Representations, Coping Strategies and
Locus of Control, with Level of Breast Self-Examination.
Research Question 7. What are the relationships between illness representation,
coping strategies and locus of control with level of breast self-examination?
Hypothesis 4: It is anticipated that higher scores on cure/ control and risk/
treatment components will be associated with higher levels of BSE.
Correlations are presented in Appendix K. Only one significant association was
found. This was between BSE and the cure/ control component for the W group ( r2 =
.494, p < .05). This suggests partial support for hypothesis 4 for the W group only.
There were no other significant correlations between any of the other IPQ components
and BSE either at the p < 0.01 or p < 0.05 level.
75
Hypothesis 5: It is anticipated that higher levels of problem-focused coping will
be associated with higher levels of BSE.
Correlations are presented in Appendix L. There were no significant correlations
found for any of the COPE subscales with level of BSE either at the p < 0.01 or p
<0.05 levels Therefore, hypothesis 5 is not supported.
Hypothesis 6: It is anticipated that higher scores on internal locus of control will
be associated with higher levels of BSE.
Correlations are presented in Appendix M. There were no significant correlations for
any of the MHLC subscales with level of BSE either at the p < 0.01 or p <0.05 levels
Therefore hypothesis 6 is not supported.
76
4.0 DISCUSSION
The present study was a comparative study investigating illness representations,
coping and locus of control for breast cancer in healthy South Asian and White
indigenous women. Illness representations were investigated using the widely
recognized five component structure (i.e. identity, time-line, consequences, cause,
cure/ control). This structure has been consistently identified in past research
(Leventhal et al, 1980; Leventhal et al, 1984; Lau and Hartman, 1983; Lau et al,
1989). Knowledge of risk factors and treatments were also assessed, as were level of
awareness of breast cancer, and level of breast self-examination. Coping strategies
and locus of control were investigated using the COPE inventory and the
Multidimensional Health Locus of Control Scale. Similarities and differences between
the two groups and relationships amongst the variables were noted.
The findings of this study will be discussed in relation to findings in five main areas.
Theoretical and clinical implications will be considered. This will be followed by a
discussion of some of the limitations and strengths of this study. Recommendations
for future research will be delineated.
4.1 Comparing Awareness of Breast Cancer and Early Detection Behaviour
between the Groups.
Hypotheses 1 and 2, relating to the influence of ethnic group membership on
awareness of breast cancer and practice of early detection behaviour, were not
supported. Both groups undertook similar levels of early detection behaviour, and
both groups had comparable levels of breast cancer awareness. Both groups obtained
77
comparable moderate to good scores on the additional risk/ treatment questions of the
EPQ included in the IPQ format.
The South Asian women in this study did not report significantly lower scores on
breast awareness, early detection behaviour or knowledge of risk/ treatment factors.
These findings are contrary to studies undertaken by Kemohan (1996), Bhakta (1991),
and Rajaram and Rashidi (1999). These studies all found low rates of screening and
low rates of knowledge about breast cancer amongst South Asian women. These
authors suggested that low screening and low breast self-examination amongst South
Asian women might be associated with their low levels of knowledge about breast
cancer, and low knowledge of the risk factors for breast cancer.
The results obtained may have been a reflection of this particular sample of South
Asian women. Approximately half the South Asian sample was bom in the UK. This
suggests that second generation South Asian women with good levels of literacy in
English have similar levels of awareness and early detection behaviour to their White
indigenous counterparts. This is encouraging. Previous studies that have shown lower
levels of awareness and lower levels of early detection behaviour may reflect socio
economic and literacy effects rather than ethnic group membership effects per se.
4.2 Pattern of Inter-relationships between the IPQ Components within the
Groups
Some studies that have investigated inter-relationships for the IPQ components have
begun to identify patterns of inter-relationships that seem to be associated with
78
adaptive outcome in chronic illness (Meyer, Leventhal and Gutmann, 1995; Petrie and
Weinman, 1997). Psychological adaptation may be derived from the overall meaning
established by the interplay amongst all five components. Murray (1990) has
si^ggestsd that certain dimensions (e.g., causal, controllability, and consequences) are
used to a greater or lesser extent in cognitive representations of illness. It is therefore
useful to conceptualize illness representations as schemata, comprising groups or
overall pictures of knowledge, and to investigate their subsequent effects on
behaviour and psychological adaptation.
Examples of differing groups of beliefs were found in two recent studies of chronic
fatigue syndrome (Heijmans, 1998; Moss-Morris, Petrie and Weinman, 1996).
Patients who considered their illness to be a serious condition, thought that their
illness was out of their control, and believed it to have serious consequences. Patients
who had a more positive outlook of their illness, experienced greater control. Buick
(1997) in his research with breast cancer patients, identified a ‘negative’ illness cluster
comprising high scores on identity, high scores on internal self-blame, high scores on
consequences and low scores on cure/ control. This negative cluster was associated
with poorer psychological adjustment and less flexible coping styles.
This study aimed to investigate the pattern of inter-relationships for the IPQ
components for the two groups. Few significant relationships between IPQ
components were identified for this study. Significant relationships that were
identified were ail for identity with causal components, with one exception.
Correlations that were found were identity with chance for the White group, between
identity and external cause for the South Asian group, and a negative correlation
79
between identity and cure/ control for the South Asian group. This suggests that breast
cancer was seen as a disease with a strong identity in terms of symptoms, and that this
strong picture was linked to fate (hereditary, chance and past medical care) for the
White group, and with physical causes (germ, diet, and pollution) for the South Asian
group. By default, neither group linked symptoms with internal or the more
psychological causes (stress, own behaviour, other people and state of mind),
suggesting that breast cancer is seen as a disease with a more biological origin.
For the South Asian group it is interesting to note that as identity goes up belief in
cure/ control goes down, suggesting that for the South Asian group the stronger the
picture of symptoms becomes the more their beliefs in cure/ control decrease. Another
significant negative correlation was found for time-line with internal cause,
suggesting that as time-line goes up (increase in length of illness) beliefs about
internal causality decrease.
There were no significant correlations for any of the other components. Thus it is
difficult to draw any conclusions regarding possible inter-relationships for the IPQ
components and judge how these might compare with the research discussed
previously. The multiple correlational design of the study increases the likelihood of
finding chance significance results. Consequently, findings need to be treated with
caution unless strong associations were found which was not the case. In addition the
time-line and cure/ control components of the IPQ obtained low internal consistency
scores, as measured by Cronbach’s alpha, and this meant that these components were
unlikely to provide reliable measures.
80
43 Illness Representations, Coping Strategies and Locus of Control used by the
Groups in relation to Breast Cancer.
43.1 Illness Representations
There were no significant differences between groups on any of the IPQ components.
The pattern of scores for both groups was as follows: both groups had very high
scores on the identity component; consequences, time-line, cure/ control and risk/
treatment all obtained moderately high scores (in descending order). The three causal
categories all scored on or below the median.
These lower scores on cause may reflect the lack of certainty surrounding causal
factors for cancer (Fallowfield and Clarke, 1991). Figures 3 and 4 illustrate the
percentages for the endorsed causal factors. It can be seen that most causal factors
exhibit relatively low percentages. Hereditary cause is a striking exception as both
groups rated it highly. This does not indicate whether the women perceived
themselves as at risk from hereditary factors, but it does suggest that they may
downplay the relative importance of the other causal factors in connection with
themselves.
The nature of the pattern of IPQ scores reported above, is broadly in keeping with IPQ
profiles that might be expected for chronic diseases, as evidenced by the moderately
high scores on consequences and time-line. Cure/ control obtained a moderately high
rating which is encouraging, as it suggests that the women perceived breast cancer as
having some treatment options.
81
It is interesting to note that on the cause sub scale both groups rated ‘own behaviour9
and ‘other people’ very low. In feet no members of the South Asian group endorsed
these causal factors. Johnson et al’s (1999) research discussed in the introduction
identified causal beliefs for cancer in South Asian women centering around speaking
‘careless words’, which could result in either bringing cancer into your own home or
causing it intentionally or unintentionally in others. The women in this sample did not
seem to endorse causal factors related to the behaviour either of themselves or others,
and this would seem to contradict Johnson et al’s (1999) identification of super
natural causal mechanisms for breast cancer within South Asian groups.
43.2 Coping Strategies
The most popular coping strategy for the White group was emotional support,
followed by reinterpretation and growth and social support (all with median scores of
12), and then planning and acceptance. The most used coping strategy for the South
Asian group was emotional support, followed by social support, turning to religion,
and venting of emotion. Emotional support relates to getting moral support, sympathy
or understanding. Social support relates to seeking social support for instrumental
reasons such as seeking advice, assistance or information. Behavioural and mental
disengagement were low for both groups. This is encouraging as these coping
strategies are believed to be dysfunctional, as they are connected to reducing one’s
efforts to deal with the stressor, and are associated with helplessness (Carver et al,
1989). With the exception of social support and planning, the most identified coping
categories fell on the emotion-focused dimension.
82
There are arguments within the literature that emotion-focused coping is less adaptive
than problem-focused coping (Carver, Scheier, and Weintraub, 1989). Emotional-
focused coping is aimed at reducing or managing emotional distress, and tends to
predominate when people feel a stressor must be endured. In contrast, problem-
focused coping is aimed at doing something about the stressor, and tends to
predominate when the individual feels that something constructive can be done.
When completing the COPE Scale, respondents in the study were asked to imagine
that they had breast cancer, or imagine that they were worried that they might have
breast cancer. Phrasing the instructions in this way was likely to bring up a scenario
where the individual imagined first receiving the news that they might have breast
cancer, rather than how they might cope with breast cancer at a specific point in time,
for example after having been officially diagnosed for a considerable period of time.
Cancer is a feared disease and it is likely that it would provoke strong initial fear
reactions, and a great deal of emotional processing would be required before the
individual could begin to focus on problem solving. This meant that when using the
COPE Inventory in this way, in this study, then it might be expected that
predominantly emotion-focused coping styles would predominate.
Significant differences between the two groups occurred on acceptance, denial,
emotional support, and religion. There was a particularly striking difference between
the two groups on religion. This is in line with research conducted into the role of
religious coping in South Asian ethnic groups. A common theme in religions of South
Asia is that past, present and future is in the hands of God (Krausse, 1989). Prayer and
83
turning to God, is often viewed as the best coping strategy in times of difficulty.
Jambunathan (1992) found that depressed Indian women used religion as a means of
coping with their difficulties, by praying and putting their trust in God as a coping
mechanism for dealing with distress. It would appear that the South Asian group in
this study also used religious coping. However, it was not the most frequently
reported coping strategy.
4 3 3 Multidimensional Health Locus of Control
There were no significant differences between the groups on any of the subscales. The
groups also reported the same order for the different dimensions of locus of control.
This order was intemality, followed by chance, followed by powerful other.
Intemality relates to the extent that one accepts one has agency over one’s actions and
control over their outcome. This higher rating was encouraging given that intemality
has been identified as associated with the performing of health behaviours in other
studies (Murray and Mc-Millan, 1993). It is interesting that the South Asian group
rated the dimensions in an equivalent way to the White group. Given the higher
incidence of religious coping found in this study, and beliefs around karma and kismet
that are a feature of South Asian religions (Johnson et al, 1999), it might have been
expected that the South Asian group would score higher on powerful other and
external.
84
4.4 Inter-relationships between Illness Representations with Coping and Locus of
Control for Both Groups
4.4.1 Illness Representations and Coping
According to the self-regulation model, individuals create cognitive representations of
their illness which then guide their coping behaviours (Leventhal et al, 1984). Via
coping, these can influence outcomes such as psychosocial functioning and
adjustment to chronic illnesses (Moss-Morris, Petrie and Weinman, 1996; Prohaska et
al, 1987). Thus it was considered useful to investigate the connections between illness
representation components and coping to see if certain illness representations were
associated with particular styles of coping. Investigating the possible connections
between illness representations and coping would allow researchers to identify the
types of thoughts or beliefs about specific illnesses that are associated with poorer
coping styles, which may in turn be associated with poorer psychological adjustment
Various studies have looked at the relationships between illness representations and
coping (e.g. Meyer, Leventhal and Gutmann, 1985). More recently Heijmans (1998)
investigated illness representations and coping behaviour for patients with Addison's
disease. Heijmans (1998) found that patients differed highly in the subjective
experience of their disease. Patients who viewed their illness as a serious condition
with serious symptoms and consequences and who viewed it as uncontrollable, were
found to engage more in passive coping strategies and to report higher levels of
disability with regard to selected measures of adaptive functioning. In contrast
patients who viewed their illness as less serious, and who expressed greater control
were found to engage in more active problem-focused coping strategies such as
85
planning and information seeking. In view of this research it was hoped that similar
patterns of association might be identified in the present study, or that there might be
observable differences in pattern between the groups.
The findings of this study provided inconclusive support for hypothesis 3. Significant
correlations were not identified on the predicted IPQ components with cure/control or
consequences for either group. Significant correlations where they did occur tended to
be between EPQ components and aspects of coping other than problem focused.
For the White group significant associations were identified between identity and
religion, and between consequences and acceptance. Acceptance relates to accepting
the reality of a stressful situation, and although it is an emotion-focused strategy it can
have positive aspects to it especially if the stressor is something that must be
accommodated to rather than changed. Identity is not an IPQ component that has been
strongly associated with coping styles in previous research and therefore it is hard to
draw meaningful conclusions.
It is noted that for the South Asian group significant negative relationships were
found for cure/ control and acceptance, risk/ treatment with denial, and cure/ control
with venting emotion. A higher score on risk/ treatment would suggest that the
woman is more aware of the risks and that this might lead to a conception that she is
likely to be at higher risk for breast cancer. It would be hoped that this higher
knowledge of risk would be associated with higher levels of early detection
behaviour. This does seem to be somewhat true for the South Asian group. As their
score on risk/ treatment goes up, their score on denial went down. As their beliefs in
86
PAGECONTAINS
PEN/PENCILMARKS
cure/ control went up their scores on acceptance and venting of emotion went down.
Although, neither acceptance, denial nor venting of emotion are active coping
strategies, they do indicate that a more positive and accurate view of breast cancer
(relating to higher cure/ control and higher knowledge of risk factors) reduces the
level of passive coping. Thus it could be concluded that there is some partial support
for hypothesis 3. It was found that although the group did not demonstrate more
active coping styles in association with a more ‘positive’ view, the associations do
suggest that the group become less passive. This held for the SA group only.
4.4.2 Illness Representations and Locus of Control
Internal locus of control is described as an attitude of taking responsibility for oneself,
and believing in the influence of one’s actions. Internal locus of control has been
linked with the performance of screening behaviours for breast cancer (Murray and
McMillan, 1995). It was anticipated that there might be some significant associations
between the illness representation components and one of the locus of control
dimensions. Identifying the underlying beliefs connected to the locus of control would
provide useful understandings of the beliefs that underlie different types of locus of
control. No significant correlations were found for any of the illness representation
dimensions with any of the locus of control dimensions for the W group. There was a
significant correlation between internal cause and internal locus of control for the
South Asian group. This would seem to make intuitive sense. It suggests that as
internal or more psychological causes of breast cancer are increasingly emphasized,
an increasing emphasis is placed on internal locus of control mechanisms.
87
4.5 How Illness Representations, Coping Responses and Locus of Control relate
to levels of Breast-Self Examination
As previously delineated various patterns of illness representation, types of coping
response and internal locus of control have all been associated with adjustment to
illness. This final set of correlations was designed to assess whether any of these
findings would apply to the performance of breast self-examination.
It was hypothesized that higher scores on the cure/ control component and the risk/
treatment component would be associated with higher levels of BSE. A significant
relationship was found between cure/ control and level of BSE for the White group.
This lends partial support to hypothesis four. This makes intuitive sense as it means
that as beliefs in cure/ control went up women were more likely to undertake BSE.
No significant correlations were found for the SA group.
No significant associations were found between the different coping strategies and
BSE. This meant that the hypothesis regarding the problem-focused types of
behaviour was not supported.
No significant associations were found for any of the locus of control dimensions and
level of BSE, thus hypothesis 6 was not supported.
88
4JS Clinical Implications
Research has shown that individual women vary in their likelihood to perform breast
self-examination, and suggests that illness representations of breast cancer are an
important factor in mediating the decision to practice breast self-examination (Savage
and Clarke, 1998; Payne, 1990). It is now becoming widely recognized that illness
representations are important for understanding individual’s responses to an illness,
and have implications for the performance of health behaviours (Moss-Morris et al,
1996). Differences in propensity to undertake adaptive behaviours are considered to
be due, in part, to variations in individual’s illness representations (Moss-Morris and
Petrie, 1994). Therefore Clinical Psychologists have a part to play in identifying the
illness representations that are associated with different types of health behaviour.
4 4 1 Interventions to Promote Early Detection Behaviour
Understanding how an individual’s illness perceptions contribute to and predict the
performance of early detection behaviour is of direct relevance to clinical
psychologists. Psychologists would have a role in assisting individuals to develop
beliefs about breast cancer, its treatment and early detection behaviour that would
encourage individuals to adopt adaptive responses and minimize the extent of
psychological difficulties that they may experience in relation to breast cancer.
The reported for this stu<fy with regard to the relations of illness
representations with performance of breast self-examination were inconclusive. This
was partly an affect of the small sample size. However, the cure/ control component
was found to be associated with higher levels of breast self-examination for the white
group, and there were no findings that appeared to contradict the relationships
89
proposed here and demonstrated in other studies. The groups had moderately high
scores for cure/ control and risk/ treatment and this indicates that breast cancer is seen
as a disease with some treatment options. Psychologists have a role to play in
assessment of beliefs about risk factors, treatment and general knowledge of breast
cancer and how these beliefs interact with the performance of adaptive health
behaviours. Psychologists can also be involved in the design, implementation and
assessment of health education packages designed to raise accurate awareness of the
risks and treatment options for breast cancer. In addition Clinical Psychologists can
evaluate the efficacy of these education packages on changes in illness
representations, levels of early detection behaviour and psychological adjustment to
breast cancer or the threat of breast cancer.
4.6.2 Interventions with Health Care Professionals
Clinical Psychologists can be involved in providing education and training to health
care professionals who come into contact with women contemplating early detection
behaviour or women with breast cancer. Education about the role of illness
representations and their implications for subsequent behaviour and psychological
adjustment would lead to better understanding of the decisions and worries that
women may encounter. Health care professionals would then be in a better position to
understand some of these beliefs, and would have an understanding of the impact that
these beliefs might have on psychological adjustment. This would help to ensure that
they were in a better position to identify individuals who had psychological
difficulties or ‘misunderstandings’ about breast cancer, and they could then pass on or
discuss information designed to provide more accurate beliefs about breast cancer that
would in turn help to promote more adaptive health behaviour and adjustment. It
90
would also help them to identify women who had psychological difficulties and who
might require input from a clinical psychologist.
It is recognized that discrepancies between the lay views of women and medical
consensus views can occur. These discrepancies can result in a number of difficulties
such as misunderstandings, communication problems, reduced adherence to treatment
and medical advice, greater client dissatisfaction, poorer health outcomes and
withdrawal from services (Hampson et al, 1994). Healthcare professionals should be
sensitive to possible discrepancies in illness beliefs that arise, and be sensitive to them
even if they do not share these beliefs. Moss-Morris and Petrie (1994) proposed that
individuaFs representations of illness may be private. Individuals may be reluctant to
discuss these private beliefs because of fear of ridicule or confrontation. This may be
particularly relevant for ethnic groups whose illness beliefs may encompass greater
discrepancies from those of western medical cultures. Moss-Morris and Petrie (1994)
stress the importance of adopting a sensitive open-minded approach with patients.
This may encourage individuals to raise issues that they are not clear about, or
communicate their own beliefs. Developing a trusting collaborative relationship
between practitioner and client may promote circumstances where differences in
health beliefs may be sensitively discussed, and it may then be possible to help clients
to consider changing those beliefs which may be inaccurate and which may promote
future health difficulties.
91
A number of methodological weaknesses could have had an effect on the results
found. These will now be discussed along with some suggestions for improvements or
alternative approaches.
4.7.1 Sample
Selection for the South Asian group was narrowed by the requirement that the
participants be able to answer a questionnaire in the English language. A high
proportion of the women approached in this category did not feel confident enough to
answer the questionnaire, as English was not their first language. This meant that the
respondents who did take part tended to be younger second-generation women. This
may have affected the representative nature of the sample, with implications for the
generalisability of the findings. It seems likely that only a select group of South Asian
women were likely to have taken part in the study, and they may have been
demographically distinct to non-participants in terms other than language, such as
educational status, degree of acculturation, and length of residence in the UK.
Additionally the belief that you should not talk about cancer, relating to the ‘careless
words’ described by Johnson et al (1999) may have meant that the actual nature of the
research topic, may have seemed daunting, or even dangerous and this may have also
put respondents off taking part. Comments that cancer is not talked about were made
by potential respondents to this effect.
The number of participants for this study was small and this meant that any
potentially significant effects would have had to be very strong in order to be
detected. The study was limited by the time available to the researcher to recruit
participants, and the high initial refusal rate. The researcher could have anticipated the
92
participants, and the high initial refusal rate. The researcher could have anticipated the
problems of recruiting the South Asian sample and could have used another approach
to recruiting women, perhaps by approaching places of work where employees were
more likely to have more fluent English. Additionally places of worship could have
been approached. A larger number of participants would have provided the
opportunity to look at how generalisable the results were, and would have affected the
power of die statistical tests used.
4*7.2 Design
The correlational nature of the data has implications for the inferences that can be
drawn from the study’s findings. Correlations only identify relationships between
variables, no assumptions can be made concerning causality. The relationships
between two variables may be the result of, or influenced by another variable that is
related to both variables in question. Hence although some associations were
demonstrated between the different illness representation components themselves and
between the components and the other scales, they should not be taken as implying
causal relationships.
Multiple correlations were involved, and this may have increased the chances of
finding chance significant results. In addition the Bonneferroni procedure was not
used. This is a statistical procedure designed to adjust the significance level to take
account for this increased chance when performing multiple correlations. This means
that significant correlations that were identified need to be treated with caution.
93
The small numbers in the group meant that statistical tests of difference were also
affected. In some cases where Mann-Whitney U’s indicated significant differences
between participants, this may have amounted to different responses for a very small
number of participants. Using a larger sample may have meant that some of the
correlations approaching significance may have obtained it.
The design of some sections of the study (e.g. the COPE section) meant that women
were asked to respond to questions about a hypothetical or imagined scenario rather
than actuality. The women did not actually have breast cancer, they were only
anticipating how they thought they might behave re coping, and not actually reporting
how they were behaving. The reality may be different and this may have affected the
nature of their answers.
The design of the study may also have been too broad in nature. It attempted to
address issues in various areas: breast cancer awareness, performance of breast self-
examination, illness representations, coping and locus of control, and differences at
each level between a South Asian group and a White indigenous group. Each of these
research areas could form the basis of a study within itself. Consequently the study
may have been too long, or the various areas may have seemed unconnected and too
complicated. This may have put people off taking part.
Conducting the study as a self-completion questionnaire that incorporated a set of
specific measures meant that information was collected in a very rigid and impersonal
way. An advantage of this was that data was the same for the various participants and
was collected in a fairly consistent manner. There are disadvantages however. The
94
was collected in a fairly consistent manner. There are disadvantages however. The
researcher was not able to interpret or probe for answers, and answers were given in a
dosed, narrow format. This may have been particularly relevant to this sample group,
as the closed responses may not have tapped the less ‘western’ or conventional
responses. The use of a more open ended interview approach would have allowed the
researcher and respondent to go into more depth, address issues that were not catered
for in the original questionnaire and allow participants greater flexibility in their
responses.
4.73 Cross-Cultural Issues
Specific difficulties arise with regard to cross-cultural research. Recruitment of
participants may be difficult, as was the case in this study. Pffefer and Moynihan
(1996) summarised some of the reasons this might be. Kinship systems where
paternalism is the norm, one person usually male, may act as a spokesperson for the
family and may obstruct access to other relatives, especially if they are female. Even
when women are approached independently as in this research, via women’s groups,
women may still be waiy of or lack the confidence to take part independently. Close
communities may mean that when approaching community groups participants may
be reluctant to take part in research on private or sensitive matters because of factors
related to embarrassment and confidentiality when respondents may know each other.
Amongst certain groups, such as political or economic refugees, or where individuals
have been the victims of racism, assurances that research is ethical and confidential
may not assuage the concerns of people who may be aware of unethical or even
harmful investigations in their country of origin, or for people whose residential status
is uncertain.
95
With regard to language problems, researchers may need to be bi-lingual, and letters
and questionnaires may need to be translated and back translated. Interpreters can be
used but reliance on interpreters presents its own problems, as unbeknown to the
investigator they may fail to translate, mistranslate or edit questions and replies.
All these differences mean that it is very often groups who are most difficult to access
who will have views that differ most from the conventional ‘western’ view of the host
country. It is these groups who may often make the least use of Public Services. It is
often the nature of these differences that makes research more difficult to undertake,
but also more necessary.
4.7.4 Measures
An overarching issue connected to the measures used in this study was their
applicability to ethnic groups. Norms for the questionnaires were not developed with
Asian groups in mind. Issues connected to the complexity of the language, and some
of the psychological concepts contained within the questionnaires have already been
discussed. This may have been a real factor in people choosing not to, or feeling
unable to take part.
Ways around this could have included translating the questionnaires or making use of
an inteipreter. However, translating questionnaires is complicated and this could have
formed the basis for an entire study in itself, and using an interpreter is perhaps
beyond the scope of a research study of this kind.
96
4.7.4.1 Illness Perception Questionnaire
The IPQ is a relatively new measure of illness representations and therefore its
psychometric properties are still under evaluation. It has demonstrated promising
reliability and validity in prior studies. However, in the case of this study the
Cronbach's alpha internal consistency ratings for the various IPQ components
obtained questionable consistency scores, and this doubtless had an influence on the
reliability of respondents answers. Ideally, tests for test-retest reliability could have
been incorporated but this was not practical given the format and time constraints of
this study.
The fixed format of the IPQ may have limited responses in particular in the cause
section, where alternative options of causality were not allowed for e.g. the possibility
of supernatural, karma, or cause connected to God were not covered.
4.7.4.2 The COPE Inventory
The COPE has been widely and reliably used in studies relating to health and illness
issues, and has been validated for use with physical illness. However, its’ many
subscales may have obscured broader trends in data. In addition many of the concepts
it explores may seem quite psychological in nature, and its reliability with Asian
populations has not been assessed. The scale is also quite long, and as it was one of
four sections it may have been more appropriate to have used the shortened version of
the scale. In addition further attempts could have been made to modify the scale,
perhaps in terms of further simplifying the language, so that it was more suitable for
an ethnic population.
97
4.7.43 Multidimensional Health Locus of Control
Although widely used with illness populations, normative data for use with a South
Asian group does not exist Again, issues connected to the complexity of language
and concepts may have been a factor, and one that could have been addressed through
modifications. The MHLC is a relatively short measure, which is a factor in its
favour, as it is quick to complete.
4.8 Suggestions for Future Research
4.8.1 Epidemiological Studies
This study identified similar levels of breast awareness, early detection behaviour and
a similar pattern of scores for illness representation between the two groups. This was
in contrast to research that has indicated that South Asian women may have low levels
of knowledge and under present for screening behaviours (Kemohan, 1996; Bhakta,
1991).
Many of the women in the South Asian sample in this study were bom in England,
were young, and well educated. It is important to stress that in reality there is likely to
be great diversity amongst the British Asian population. Reasons for this include,
different migration patterns, different length of residency in the UK, different cultural
beliefs and customs and different levels of assimilation with the host community. It is
important to undertake research to investigate how these different socio-demographic
and cultural factors interact to impact upon utilisation of public services, and with
98
regard to this area of research, impact upon level of early detection behaviour and
knowledge of breast cancer.
It will be necessary to target and carry out research with specific types or cohorts of
South Asian communities in order to identify groups that may be at most risk of
under-utilisation of services, and investigate the different epidemiological rates for
breast cancer and practice of early detection behaviour associated with these different
groups.
4.8.2 Qualitative Research
Future research could undertake to further investigate prevalence of early detection
behaviour with relevance to its relations with illness representation by adopting a
more qualitative approach. As research with these groups is at an early stage, and
existing research into illness representations has tended to be based on white
populations, it may be useful to adopt a less prescriptive, more open-ended approach
to asking questions than the EPQ approach offers. A qualitative approach might be
necessary to investigate beliefs that lie outside the consensus ‘western’ view of
disease that underlies the IPQ.
Qualitative research could still adopt the basic five dimensional self -regulation model
as its basis, and questions could still be structured around its five dimensions, but a
more open approach may allow more in depth investigation of different
conceptualizations of illness in the ethnic minority group. Exploratory studies could
provide a strong basis for more deductive quantitative approaches, which could be
used at a later stage to test findings with wider respondent groups.
99
4.83 Modifications with regard to the present research
Ideally similar research into illness representations and breast cancer should be done
with a larger, more focused sample to allow for greater generalisability and detection
of significant results. Another suggestion might be to undertake research among a
group of South Asian participants who are entirely British bom, and replicate the
research with a group who are entirely of immigrant status. This would allow for the
effects of acculturalisation to the host community to be assessed. Less educated, less
integrated minority groups are an important focus for further research into illness
beliefs, as they are perhaps the group most removed from ‘western’
conceptualisations of illness and with least access to services.
4.9 Conclusions
No significant differences between the groups were found on breast awareness, early
detection behaviours or risk/ treatment factors. This is in contrast to previous studies
(e.g. Rajaram and Rashidi, 1999; Bhakta, 1991) which have identified lower levels of
early detection behaviour and knowledge for breast cancer amongst South Asian
women.
No striking inter-relationships between IPQ components were identified. This may be
a reflection of the small sample size. Illness representations for breast cancer were
found to be high on identity, moderately high on consequence, time-line, cure/ control
and the additional risk/ treatment scale. The moderately high scores on cure/ control
and risk/ treatment are encouraging, and suggest that both groups of women hold
100
beliefs about the possibility for treatment success for breast cancer. Scores for
causality were low, perhaps reflecting uncertainty around causality for breast cancer,
although both groups strongly endorsed the importance of hereditary causality.
Both groups used predominantly emotion-focused coping styles, but the strategies
selected were arguably adaptive given the hypothetical nature of the breast cancer
scenario. There were no differences in locus of control between groups, with both
groups adopting an intemality stance.
Relationships between illness representation and coping, and illness representations
and locus of control and breast self-examination were investigated, to see if certain
illness representations were associated with more adaptive or non-adaptive coping
styles, and locus of control. The only significant associations were for higher scores
on cure/ control and risk/ treatment components with lower scores on denial,
acceptance and venting of emotion for the South Asian group, suggesting that more
knowledge and a more positive outlook are associated with a decrease in more passive
or maladaptive coping styles. This held for the South Asian group only. With regard
to locus of control, the South Asian group correlated internal cause with internal locus
of control, which suggests a perception that individuals’ own internal or psychological
states are seen as important in relation to breast cancer. Again this held for the South
Asian group only. A positive significant correlation was obtained between cure/
control and level of breast self-examination for the White group.
Overall the most striking conclusion was the high level of similarity in findings for
the two groups. This similarity may reflect the particular nature of the South Asian
101
group in this study. Small sample size and multiple correlations meant that significant
associations even when identified should be interpreted with caution. It may be useful
to replicate the study with a larger sample size, and a narrower focus. Further
investigation of illness representations with regard to specific age cohorts, socio
economic background, and level of acculturisation amongst South Asian women is
required.
102
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a p p e n d ic e s
Appendix A: Background Questionnaire
The following questions ask for details about you and about issues connected to breast cancer. For each question, place a tick in the box opposite the response that best applies to you, or write your answer in the space provided.
1. What is your name and contact number (or address if not on the phone).Name ............................................................................................Contact Number/ Address................. ...............................................
This information is not essential, but would be helpful if any responses are not dear and need to be checked out. Responses will then be made anonymous.
2. What is your date o f birth?................................. ...................................................
3. Do you have any children? Yes/ No
4. What is your employment status at the moment? Unemployed □Self employed □ Full time employment □ Part time employment 0 Student □ Retired □ Housewife □
5. How long has this been your employment status? ..............................................
6. If you are in work, what do you do? ............................................................
7. Have you lived in the UK all your life? Yes/ No
If no, where else have you lived .............................................................
8. How long have you lived in the UK? .............................................................
9. What is your country of birth? ..............................................................
10. What is the main language spoken at home? English □ Punjabi □ Hindi □ Urdu □ Gujurati □Other (please state) .................................................
11. What is the highest level of education you have achieved, and where?No formal education □ School education □Further education at college □ University □Country in which achieved:................................... ..........................
12. How would you describe your religious background?Christian D Muslim D Hindu D Buddhist D Sikh D Buddhist □ Other □ Please state.................. ...................
115
13. How would you describe your ethnic background?White European □ Afro-Caribbean □ Pakistani □Indian □ Bangladeshi □Other (please state):............. ................
14. How strongly would you say your ethnic background influences your life?A lot □ Quite a bit □ Not much □ Not at all □
15. Has a dose friend or family member o f yours ever developed breast -cancer?Please circle: Yes/ No
16. Have you had any experience o f breast disease? Yes/ No(Please note you do not need to answer or give details to this question, if this is the case please proceed to question 1 8).If yes, please describe:.........................................................................................
17a Have you ever thought that you might have breast cancer?
Please circle: Yes/ No
17b. if yes, please describe why you thought that you might have breast cancer?
18. Do you examine your own breasts to check for lumps?i. Once a month □ ii. every couple of months □iii. at least once every six months □ iv. at least once a year □v. less often □ vi. Never □
19. Have you ever had a mammogram? Yes/ No
20. Have you ever had a clinical breast examination? (manual examination of your breasts by a Doctor or Nurse). Yes/ No
2 1. When offered a mammogram do you:
always accept sometimes accept never accept never been offered
1234
116
Appendix B: Your views about Breast Cancer
Please circle the number that best describes how often you think someone with breast cancer would experience the following symptoms as part of their illness.
SYMPTOM All the time Frequently Occasionally NeverPain 1 2 3 4Nausea 1 2 3 4Breast lumps 1 2 3 4Pain in the breast area
1 2 3 4
Fatigue 1 2 3 4Changes in the nipple
1 2 3 4
Discharge from the nipple
1 2 3 4
Inflammation of the breast
1 2 3 4
Sleepdifficulties
1 2 3 4
Puckering or dimpling of breast skin
1 2 3 4
Changes in sensation in breast
1 2 3 4
Loss o f strength 1 2 3 4
We are interested in your own personal views of how you see breast cancer. Please indicate how much you agree or disagree with the following statements about breast cancer, by circling the appropriate number.
StronglyDisagree
Disagree Neither agree nor disagree
Agree Stronglyagree
A germ or virus causes breast cancerDiet plays a major role in causing breast cancerPollution of the environment causes breast cancer
117
StronglyDisagree
Disagree Neither agree nor disagree
Agree Stronglyagree
Breast cancer is hereditary - it runs in families
1 2 3 4 5
Breast cancer is caused by cancer
1 2 3 4 5
Stress is a major factor in causing breast cancer
1 2 3 4 5
Breast cancer is largely caused by a person’s own behaviour
1 2 3 4 5
Other people play a large role in causing breast cancer
1 2 3 4 5
Breast cancer is caused by poor medical care in the past
1 2 3 4 5
A person’s state of mind plays a major part in causing breast cancer
1 2 3 4 5
Breast cancer lasts for a short time
1 2 3 4 5
Breast cancer is likely to be permanent rather than temporary
1 2 3 4 5
Breast cancer lasts a long time
1 2 3 4 5
Breast cancer is a serious condition
1 2 3 4 5
Breast cancer has major consequences for a person’s life
1 2 3 4 5
Breast cancer has become easier to live with
1 2 3 4 5
Having breast cancer would not have much effect on my life
1 2 3 4 5
Having breast cancer would strongly affect the way others see me
1 2 3 4 5
Breast cancer has serious economic and financial consequences
1 2 3 4 5
Breast cancer would strongly affect the way I saw myself as a person
1 2 3 4 5
118
StronglyDisagree
Disagree Neither agree nor disagree
Agree StronglyAgree
Breast cancer improves in timeThere is a lot you can do to control the symptoms of breast cancerThere is very little that can be done to improve breast cancerTreatment is effective in curing breast cancerRecovery from breast cancer is largely dependent on chance or fateWhat a person does can determine whether their breast cancer gets better or worseBreast cancer can be treated with surgeryBreast cancer can be treated with radiotherapyBreast cancer can be treated with chemotherapyThe chances of getting breast cancer increase past the age of 35Starting your periods before the age of 12 is associated with higher chances of developing breast cancerHaving your first child after the age of 30 is associated with higher chances of developing breast cancerLong term use o f the contraceptive ill is associated with a higher risk of developing breast cancer
119
StronglyDisagree
Disagree Neither agree nor disagree
Agree Stronglyagree
Long term use of hormone replacement therapy is associated with a higher risk of developing breast cancerWorking in certain jobs is associated with a higher risk o f developing breast cancerLiving in an urban area is associated with a higher risk of developing breast cancerLiving in a rural area is associated with a higher risk o f developing breast cancerWhite Western European women have higher rates of breast cancer than other ethnic groupsAfro-Caribbean women have higher rates of breast cancer than other ethnic groupsAsian women have higher rates ofbreast cancer than other ethnic groups
120
Appendix G COPE Inventory
Questionnaire Three
If you were experiencing breast cancer or thought that yon might have breast cancer what would yon do? There may be many things people do to help them deal with an illness such as breast cancer, but lam interested in what YOU would do. Make your responses as true for you as yon can - not what you think ‘most people’ would do. Treat each item separately from every other item, and answer every item. There are no right or wrong answers. Please place a tick in the appropriate column.
If I had breast cancer or thought that I might have breast cancer I would........... ..
I would not do this at all
I might do this a bit
I might do this a medium amount
I would do this most of aD
1. Try to grow as a person as a result o f the experience2. Turn to work or other substitute activities to take my mind off things3. Get upset and let my emotions out4. Try to get advice from someone about what to do5. Concentrate my efforts on doing something about it6. Say to m yself‘‘this isn’t real”7. Put my trust in God8. Admit to myself that 1 can’t deal with it, and give up trying9. Restrain myself from doing anything too quickly10. Discuss my feelings with someone11. Get used to the idea that it happened12. Talk to someone to find out more about the situation13. Keep myself from getting distracted by other thoughts or activities14. Daydream about other things other than this15. Get upset, and feel really ware of it16. Seek God’s help
121
If I had breast cancer or thought that I might have breast cancer I would.............. .
I would not do this at all
I might do this a bit
Imigbt do this a medium amount
I would do this most of all
17. Make a plan of action18. Accept that this has happened and that it can’t be changed19. Hold off doing anything about it until the situation permits20. Tiy to get emotional support from friends and relatives21. Just give up trying to reach my goal22. Take additional action to try to get rid of the problem23. Refuse to believe that it has happened24. Let my feelings out25. Try to see it in a different light to make it seem more positive26. Talk to someone who could do something concrete about the problem27. Sleep more than usual28. Try to come up with a strategy about what to do29. Focus on delaying with this problem and if necessary, let other things slide a little30. Get sympathy and understanding from someone31. Give up the attempt to get what I want32. Look for something good in what is happening33. Think about how I best might handle the problem34. Pretend that it hasn’t really happened35. Make sure not to make matters worse bv acting too soon36. Try hard to prevent other things from interfering with my efforts at dealing with this
122
I f l had breast cancer or thought that I might have breast cancer I would........... ..
I would not do this at all
Imigjbt do this a bit
I mightdo this a medium amount
I would do this most of all
37. Go to the cinema or watch television, to think about it less38. Accept the reality o f the fact that it happened39. Ask people who have had similar experiences what they did40. Feel a lot of emotional distress and find myself expressing those feelings a lot41. Take direct action to get around the problem42. Try to find comfort in my religion43. Force myself to wait for the right time to do something44. Reduce the amount of effort I’m putting into solving the problem45. Talk to someone about how I feel46. Learn to live with it .47. Put aside other activities in order to concentrate on this48. Think hard about what steps to take49. Act as though it hadn’t even happened50. Do what has to be done, one step at a time51. Learn something from the experience52. Pray more than usual
123
Appendix D: Multidimensional Health Locus of Control Scale
Questionnaire Four
This questionnaire is designed to determine the way in which different people view certain important health-related issues. Each item is a belief statement with which yon may agree or disagree. Beside each statement is a scale which ranges from strongly disagree (1) to strongly agree (6). For each item we would like you to circle the number that represents the extent with which you disagree or agree with the statement The more strongly you agree with a statement, then the higher will be the number you circle. The more strongly you disagree with a statement then the lower will be the number you circle. Please make sure that you answer every item and that you circle only one number per item. This is a measure of your personal beliefs: obviously there are no right or wrong answers.
Please answer these items carefully, but do not spend too much time on any on item. As much as you can, try to respond to each item independently. When making you choice, do not be influenced by your previous choices. It is important that you respond according to your actual beliefs and not according to how you feel you should behave or how you think we want you to behave.
Stronglydisagree
Moderatelydisagree
Slightlydisagree
Slightlyagree
Moderatelydisagree
Stronglyagree
1. If I get side it is my own behaviour which determines bow soon I get well again2. No matter what I do, if I am going to get sick, I will get side3. Having regular contact with my doctor is the best way for me to avoid breast cancer4. Most things that affect health happen by accidentS. Whenever I don’t feel well, I should consult a medically trained professional6 .1 am in control of my health7. My family have a lot do with my becoming side or staying healthy8. When I get side I am to blame9. Luck {days a big part in determining how soon I will recover from an illness10. Health professionals control my health
124
Stronglydisagree
Moderatelydisagree
Slightlydisagree
Sfighdyagree
Moderatelydisagree
Stronglyagree
11. My good health is largely a m atte- o f good fortune12. The main thing which affects my health is what I myself do13. I f I take care o f myself I can avoid illness14. When I recover from an illness, it’s usually because other people (for example doctors, nurses, family, friends) have been taking good care o f me15. No matter what I do I am likely to get sick16. If it’s meant to be, I w ill stay healthy17. If I take the right actions, I can stay healthy18. Regarding my health, I can only do that my doctor tells me to do
125
Appendix E: LETTER OF INVITATION TO PARTICIPATE
Dear
I am a clinical psychologist in training at Leicester University. As part of my work, I
am involved in research looking at women’s knowledge of breast cancer.
Enclosed is an information leaflet detailing a research project I am about to cany out
Please take some time to read the information leaflet 1 would be grateful if you could
spare the time to complete the questionnaires. I believe that the information gathered
could help to improve knowledge and care for people who experience breast cancer,
In addition it may also help to improve information about screening and preventative
measures that women can take.
I will be in contact to discuss whether you would be willing to spare about half an
hour of your time participating in the study. You will be able to ask any questions that
you might have. If you decide that you will be willing to participate, you will be asked
to sign a written consent form at that time.
Thanking you in advance for your cooperation.
Yours sincerely
Rebecca Martyn
Trainee Clinical Psychologist
126
Appendix F: PARTICIPANT INFORMATION LEAFLET
PARTICIPANT INFORMATION LEAFLET
I am a Psychologist in Clinical Training at Leicester University. As part of my work I am conducting a research project to look at the general populations9 level of knowledge about breast cancer. I am hoping to speak to a number of women from different ethnic backgrounds, and with different experiences and knowledge of breast cancer.
Participation in this study will involve one meeting with myself, either alone or with a group of women. It is anticipated that it will take around 30 minutes to complete. You will be asked to complete 4 brief questionnaires, which relate to your knowledge, behaviour and some personal details. A researcher will be present to help you complete these questionnaires and answer any questions.
Many women experience breast cancer and require help and treatment for this. Even if you never experience breast cancer yourself, it is likely that you will know someone else who does. There are treatments/ screening procedures available to help cope with breast cancer. This project will be useful to health professionals in helping to develop better ways of helping women cope with breast cancer.
The information that you give will remain confidential and your anonymity is assured. You are under no obligation to complete the questionnaires and may stop at any point
Thanking you for your time and attention.
Rebecca Martyn (Trainee Clinical Psychologist, Leicester University)Professor Ed Miller (Head of Applied Psychology, Department of Applied Psychology, Leicester University).
127
Appendix G: PARTICIPANT CONSENT FORM
This form should be read in conjunction with the Patient Information Leaflet.
I have read the information leaflet and had the opportunity to discuss the details of the
study with the researcher and ask questions. The nature of the study has been
explained to me and 1 understand what will be required if I take part in the study.
I understand that any information I give will be anonymised and will not be traced to
me as an individual. I understand that the questionnaire responses will remain
confidential and be. used for this investigation only.
I understand that if 1 give my consent to participate at this point into time, I can
change my mind and withdraw my consent at any point in the future. My decision to
participate or not will not affect either my current or future treatment
I give my consent to participate in the.study, involving completing a set of questionnaires.
Name (print): * ------------------------------------------------
Signed: Date: ------------------------
If you have any further questions I can be contacted at the following address and messages can be left on the telephone number below.
Rebecca MartynTrainee Clinical PsychologistUniversity of LeicesterCentre for Applied Psychology (Clinical Section)University Road Leicester LEI 7RH Tel: 0116 252 2466
128
SPECIAL NOTE
ITEM SCANNED AS SUPPLIED PAGINATION IS AS SEEN
Appendix H: Inter-correlations between the IPQ Components and the COPE Subscales for the White Group
C O P E S C A L E I d e n t i ty T i m e - l i n e C o n s e q u e n c e s External Internal C h a n c eC u r e /
c o n t r o lR i s k / t r e a tm e n t
P r o b le m - f o c u s e d c o p in g
A c t i v e c o p in g.376 p = .124
.083 p - .743
-.131 p = .605
-.066 p = .794
.231p = .356
-.087 p = .731
.175 p = .488
.239 p = .340
P l a n n i n g .402 p = 0.98
.151p = .551
-.129p = .610
.142 p = .575
.300 p = .227
.041p = .871
.108 p = .670
.466 p = .051
S u p p r e s s i o n o f c o m p e t i n g a c t i v i t i e s .464 p = .053
.145 p = .566
.184 p = .466
-.052 p = .838
.199 p - .429
.135 p = .593
.143 p = .571
.403p = .097
R e s t r a i n t c o p in g -.071 p = .781
.206 p = .412
.297 p = .231
-.217 p = .387
- .646** p = .004
.011p = .965
.006 p = .980
-.193 p = .444
S o c i a l s u p p o r t.439p = .068
-.091 p = .719
-.068 p .790
-.248 p .322
.163 p = .517
-.047 p = .853
.324 p = .190
.203p = .420
E m o t i o n - f o c u s e d c o p i n g
E m o t i o n a l s u p p o r t.431 p =.074
.027 p = .915
-.212 p = .398
.114 p = .652
.038p = .881
-.186 p = .459
.375 p = .125
.428 p = .077
R e i n t e r p r e t a t i o n a n d g r o w t h.321p = .194
.114 p = .653
.041p = .870
-.005 p = .985
.046 p = .857
-.068 p = .789
-.077 p = .762
.104p = .680
A c c e p ta n c e.164 p = .514
.180 p .476
.587*p = .010
-.457 p = .057
-.307 p = .215
.319 p = .197
.138 p = .586
-.127p = .616
D e n i a l-.335 p = .174
.033p = .898
.182 p = .471
-.070 p = .784
-.111 p = .661
.198 p = .430
-.273 p = .274
-.290 p = .243
R e l ig i o n.411p = .090
.398p =.102
.365 p = .136
.034 p = .892
.307 p = .215
.138 p = .585
.033p = .898
.200 p = .426
O t h e r c o p in g
V e n t in g e m o t i o n .072 p = .775
-.083 p = .742
-.274 p = .270
-.136 p = .589
-.101 p = .691
-.217 p = .387
.191p = .449
.164 p = .516
M e n ta l d i s e n g a g e m e n t -.066 p = .796
-.074 p .772
-.084 p = .740
.373p = .128
.281p = .259
-.273 p = .274
-.030 p = .905
.321p = .194
B e h a v i o u r a l d i s e n g a g e m e n t-.270 p = .279
-.064 p = .801
-.002 p = .905
-.265p = .288
-.237 p = .343
.459 p = .055
-.121 p = .632
-.366 p = .136
**p<o.o$, *p<o.oi131
Appendix I: Inter-correlations between the IPQ Components and the COPE Scale for the South Asian Group
COPE Scale Identity Time-line Consequences External cause Internal cause Chance Cure/ control Risk/ treatment
Problem-focused coping
Aotive coping .352p * .166
-.060 p = .819
.50p = .848
.001p = .998
-.069 p = .794
.382 p * .130
-.045 p = .864
-.141 P “ -590
Planning .119 p “ .650
.462p “ .062
-.043 p 88.870
-.447 p =* .072
-.600* p = .011
.248 p = .338
.060 p ** .820
-.185 p «.478
Suppression of oompeting activities .183p * .482
.257 p = .320
-.322 p = .207
.251p * .331
-.108 p = .679
.312 p * .223
-.060 p = .818
.366 p = .149
Restraint coping .317 p® .215
.124 p = .636
.239 p = 356
-.135 p = .605
-.009 p = .974
.624** p = .007
-.051 p “ .845
-.142 p = .586
Social support .138 p * .599
-.246 p = .341
.165 p ■* .527
-.249 p «.334
.119 p = .649
-.186 p ■* .475
.239 p = .356
.249 p * .334
Emotion-focused coping
Emotional support .031p = .907
-.328 p = .198
.418 p = .095
-.271 p = .292
.181p = .487
-.089 p =* .733
.170 p 88 .515
.176 p * .500
Reinterpretation and growth -.081 p = .757
-.078 p = .765
-.014 p = .957
-.369.145
-.469 p = .057
.248 p = .338
-.227 p = .382
-.307 p = .231
Acceptance .309 p = .227
.174 p = .505
-.105 p = .687
.017 p = .949
-.219 p = .399
.158 p = .546
-.649** p = .005
-.181 p = .486
Denial -.072 p = .784
-.173 p = .507
.199 p = .444
-.227 p = .381
.243 p = .348
.475p = .054
-.184 p = .480
-.627** p = .007
Religion -.103 p = .694
-.224.388
.041p = .877
.325p = .204
.440 p = .077
-.134 p = .607
-.106 p = .685
.016 p = .952
Other coping
Venting emotion .191p = .464
-.427 p - .087
-.244 p = .345
-.025 p = .925
-.077 p = .770
.102 p = .698
-.563* p = .019
-.186 p = .475
Mental disengagement -.135 p = .607
.227 p = .381
-.271 p = .292
.017 p = .948
-.255 p = .323
.210 p - .419
.126 p = .629
-.141 p = .590
Behavioural disengagement .000 p= 1.00
-.113p = .666
-.311 p = .224
-.229 p = .376
.201p = .438
.007 p = .980
-.114 p = .663
-.463p = .061
*p<0.05, **p<0.01130
Appendix J: Inter-correlations between the IPQ Components and MHLC Scale for Both Groups
MHLC Scale
Identity Time-line Consequences Externalcause Internal cause Chance Cure/
controlRisk/ treatment
White Group
Intemality .126 .304 -.185 .306 .015 .250 .260 .372p = .618 p = .219 .462 p ■» .216 p - .952 p = .317 p = .298 p = .129
Chance -.098 ' .374 .273 -.215 -.149 .010 -.187 .129p = .699 p = .126 p = .272 p 88 .393 p 88.555 * .970 p 88 .458 p = .611
Powerful Other -.083 .157 -.112 .115 .323 -.151 -.291 .094p «.743 p = .534 p = .657 p = .650 p 88.192 p = .551 .242 p “ .709
South Asian Group
Intemality .252 -.311 .024 .105 .662** .436 -.324 .060p = .329 p = .225 p = .971 p =-.688 p = .004 p 88.080 p = .204 p ».820
Chance .015 -619** .060 .426 .573* -.115 -.092 -.048p = .953 p = .008 p “ .819 p = .089 p 88 .016 p = .660 p = .724 p “ .855
Powerful Other -.326 .174 .160 -.051 .404 -.238 .454 .185p = .201 p = .504 p * .540 p = .846 p = .108 p 88 .358 p = .067 p = .478
* p <0.05, **p<0.01
131
Appendix Ks Correlations between 1PQ Components and Breast Self- Examination both groups
IPQ ComponentsWhite Group BSE
South Asian Group BSE
Identity .136 p = .590 -.064 p = .806Time-line -.220 p = .381 .367 p = . 147Consequences .076 p * .765 .215 p = .408External -.205 p = .413 .096 p= .715Internal .204 p = .417 -.089 p = .736Chance -.115 p -.648 .435 p = .081Cure/ control .494 p = .037* -.204 p = .432Risk/ treatment -.007 p = .978 -.105 p = .688
* p<0.05; ** p <0.01
132
Appendix L: Correlations between COPE Scale and Breast Self-Examination both groups_____________________________________________________
COPE ScaleWhite Group BSE
South Asian Group BSE
Problem-focused coping Active coping Planning
.118-.142
p = .640 p = .575
-.107.068
p = .682p = .796
suppression of competing activities -.060 p * .812 .105 p = .688
Restraint coping -.310 p = .211 .096 p = .714Social support .017 p= .947 -.377 p = . 136Emotion-focused coping
Emotional support -.076 p ».765 -.193 p = .459Reinteipretation and growth -.258 p * .302 .129 p = .623Acceptance .107 p =.673 .189 p = .468
Denial -.130 p = .607 .344 II •—*
3
Religion -.096 p = .706 .281 p = .274Other copingVenting emotion -.116 p = .645 .001 p = .996
Mental disengagement .122 p = .631 -.112 p = .668
Behavioural disengagement -.309 p = .213 .053 p = .839
133
Appendix M: Correlations between MHLC Scale and Breast Self-Examination both groups
MHLC Scale White Group South Asian GroupBSE BSE
Intemality -.089 p = .724 .081 p = .757
Chance -.453 p = .059 -.039 p = .880
Powerful Other -.192 p = .445_____ .099________p = .707
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