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The Subjective Quality of Life of People
with MS and their Partners
Kylie King, B.Sc (Melbourne), P.Grad.Dip.Psych (Melbourne)
This thesis is submitted in partial fulfilment of the requirements for the
degree of Doctorate of Psychology (Health)
School of Psychology,
Faculty of Health and Behavioural Sciences,
Deakin University (Burwood)
Victoria, Australia
October 2001
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DEAKIN UNIVERSITY
CANDIDATE DECLARATION
I certify that the thesis entitled:
The Subjective Quality of Life of People with MS and their Partners
submitted for the degree of Doctor of Psychology (Health) is the result of my own
research, except where otherwise acknowledged, and that this thesis in whole or in part
has not been accepted for an award, including a higher degree, to any other university
or institution.
Full Name: KYLIE ELIZABETH KING
Signed
Date
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TABLE OF CONTENTS
Abstract............................................................... .Error: Reference source not found
Acknowledgements............................................. .Error: Reference source not found
List of Contents................................................... .Error: Reference source not found
List of Tables...................................................... .Error: Reference source not found
List of Figures..................................................... .Error: Reference source not found
List of Appendices.............................................. .Error: Reference source not found
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ABSTRACT
This thesis explored the validity of a model, based on previous research, to explain
the way in which psychological factors interact to maintain subjective quality of life
in the adaptive range of 50-100%SM (Scale Maximum) for individuals in normal
life circumstances. Subjective quality of life was proposed to be maintained by
psychological factors including personality, positive cognitive biases of self-esteem,
primary control and optimism and perceived social support. Furthermore, it was
proposed that secondary control mediates between positive cognitive biases and
subjective quality of life. The study explored the subjective quality of life, and
associated psychological factors, of people with Multiple Sclerosis (MS) a chronic
debilitating illness of the central nervous system, partners of people with MS, and a
comparison control group.
The first study utilised a technique called photovoice to explore the factors that
influence the subjective quality of life of people with MS and the ways they cope
with everyday difficulties. Nine people with MS were provided with disposal
cameras and were asked to take photographs of things that either positively or
negatively effected their quality of life. The photographs were then used tostimulate discussion in quantitative interviews. Participants reported varied
influences on their quality of life and ways of coping with everyday difficulties.
Items were added to the questionnaires of the second study based on this
information.
The second study involved 65 people with MS, 37 partners of people with MS, and
93 comparison controls who completed a self-report questionnaire designed to
measure the variables of the model cited above. People with MS reported a lower
subjective quality of life than both partners and controls. The model predicted a
substantial proportion of the variance in the subjective quality of life of the controls
(45%), people with MS (59%) and partners of people with MS (58%). The
findings are discussed in relation to previous research and to potential interventions
aimed at improving subjective quality of life.
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ACKNOWLEDGEMENTS
There are so many people to acknowledge for their contribution not only to this
thesis but also to my personal growth and happiness over the last three years.
I thank the MS Society of Victoria and their members for their commitment to this
project. I thank the people with MS and their partners who took part in this
research, and the others that didnt take part but provided me with support and
encouragement along the way. People who took time out to let me know that they
thought what I was doing was valuable and worthwhile.
I thank my supervisor Prof. Bob Cummins for his dedication to this thesis. His
assistance with conceptual and technical matters was invaluable. His enthusiasm
for research and confidence in my abilities when I needed them most will not be
forgotten. I thank also all the other staff at Deakin University who supported me
with their patience, wisdom, and encouragement. I especially Kate Moore who
looked after us Healthies all the way.
I thank my fellow students especially Maria, Tina, and Olivia for their complete
understanding, support and tolerance even though they were struggling with their
own difficulties. I am sure I have made friends that will last a lifetime.
I thank my other friends, family, and my partner Travis for never once letting me
believe that I could not make it. I thank them also for their financial support that
made this all possible, for cheering me up when I was stressed and sad, for
understanding when I couldnt return their unwavering support, and for reminding
me that there are some things more important than a thesis. I only hope that I can
one-day repay the support you all provided.
iii
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LIST OF CONTENTS
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LIST OF TABLES
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LIST OF FIGURES
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LIST OF APPENDICES
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CHAPTER 1
INTRODUCTION TO THE THESIS
Multiple Sclerosis (MS) is a chronic, degenerative illness of the central nervous
system. The course of the illness is largely unpredictable, and its potential
symptoms are wide ranging (Ko Ko, 1999). People with MS often experience
downward fluctuations in physical and mental ability. There are few effective
treatments for MS, and there is little knowledge regarding its aetiology (MS
International Federation, 2001). The symptoms of the illness, its unpredictable
course, and the limited availability of treatments, often negatively effect
psychosocial functioning and well-being. It is therefore likely that people with MS
will benefit from research that focuses on enabling them to live full and satisfying
lives within the unique constraints of their condition. The following thesis has this
focus.
This thesis is premised on a model, based on previous research, that describes how
people evaluate the quality of their lives. A large body of research has attempted
to identify the factors that enable people to live full and satisfying lives. This thesisreviews this research and integrates common findings in the development of a
model. The resulting model is then tested using people with MS, their partners and
a control comparison group. An outline of the chapters of the thesis now follows.
Outline of the Thesis
In the next chapter, the thesis discusses the symptoms, prevalence, treatment,
psychosocial impact of MS, and the rationale for the focus on this illness. It
provides the context for the research within the unique characteristics of the illness,
which is potentially stressful and challenging to an individuals satisfaction with
life.
In the third chapter, the definition and measurement of subjective quality of life is
1
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discussed. This is necessary as the area is laden with definitions, which are often
used interchangeably, yet are theoretically distinct. This chapter provides a
conceptual framework for the thesis.
Chapter 4 describes the impact of life circumstances and subjective factors on
quality of life. The consistency of life quality evaluations across individuals is
discussed. This provides evidence for the limited influence of objective life
conditions.
Chapter 5 describes the psychological factors that are held to be associated with
subjective quality of life, namely: personality, positive cognitive biases, secondary
control, and social support. The interactions between these factors are examined.
Chapter 6 summarises the research reviewed in earlier chapters. A model is
proposed to explain the process by which identified psychological factors interact
to maintain subjective quality of life. This model is based on previous research.
Chapter 7 presents the first of two linked studies designed to test the model. Thisis a qualitative study, comprising interviews with people with MS. It seeks to
identify the factors contributing to evaluations of life quality. The findings of this
study were used to ensure that the material for the second study, a self-report
questionnaire, was both valid and sensitive to people with MS. The study resulted
in some modifications to the material, including the addition of new items and the
re-wording of other items.
Chapter 8 presents the second study. This study explores the proposed model
using a larger group of people with MS, partners of people with MS and a control
comparison group. Hypotheses based on the model are tested via a self-report
questionnaire. The study reveals differences between the three groups, and
support for the interactions between variables proposed by the model.
Chapter 9 reconciles the findings of the thesis with the research reviewed in the
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first five chapters. This chapter explores the implications of the findings for people
with MS, partners of people with MS, people unaffected by chronic illness, and
interventions aimed at these groups. Limitations of the current research and
avenues for future research are discussed, and conclusions regarding the thesis are
drawn
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CHAPTER 2
MULTIPLE SCLEROSIS
MS is one of the most common diseases of the central nervous system in adults and
affects over two and a half million people worldwide (MS Society Australia, 2000).
The symptoms of the disease are widespread and unpredictable, such that
individuals are often faced with changes in physical and mental ability.
Prevalence
MS affects three women for every two men (MS Society Australia, 2000). Onset
is most common in early adulthood, with a peak between the ages of twenty and
forty-five. Thus, the disease tends to occur at the same time that individuals are
beginning to establish families, occupational careers and financial security.
Consequently, MS can exert powerful influences on psychosocial functioning.
Disease Symptoms and Course
People with MS will usually experience a variety of neurological impairments
including muscle spasticity, with or without muscular weakness. They may also
experience impairments in cognition, vision, balance, bladder and sexual function
(Ko Ko, 1999). However, while MS is a degenerative disease, it does not appear
to appreciably shorten life span (Rao, Huber & Bernstein, 1992). MS may result in
crippling physical disability requiring full time care. However, essential bodily
functions remain intact.
It is not possible to predict the course of the disease at the time of diagnosis on the
basis of clinical presentation or immunological findings (Thompson, Colville,
Ketelaer & Paty, 1994). It is, however, possible to recognise broad categories of
the disease and to roughly classify people according to the differing temporal
course of their illness. Thus, 50 to 60% of people with MS fall into the category of
Relapsing-Remitting MS, characterised by recurrent attacks of neurological
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dysfunction followed by periods of complete or incomplete remission. 10 to 20%
of patients fall into either Primary Progressive MS , marked by relentless decline in
neurological function and disability, or Secondary Progressive MS where a
relapsing-remitting course has converted to a progressive course. In the third
category of Benign MS, there may be a long period between the recognised onset
of the disease and development of significant disability. 20 to 30% of people with
MS have a benign disease course (Rao, Huber & Burnstein., 1992).
Aetiology
The symptoms of MS are caused by scarring of the myelin sheath that insulates
nerve fibres of the central nervous system (MS Society Australia, 2000).
However, very little is known about the aetiology of this scarring. The aetiology
may involve either a genetic predisposition or an immune reaction to a virus (MS
Society Australia, 2000).
Treatment
Currently there is no cure for MS. Facets of the disease have recognised
treatments that are effective for some people. For example, steroids are
administered in acute exacerbations as they reduce the duration and allow a return
to normal function to occur more rapidly (MS International Federation, 2001).
There are also drugs that have some effect on the frequency and severity of
exacerbations; including Interferon Beta and Copolymer 1. These are administered
by subcutaneous self-injection on a daily basis (MS International Federation,
2001).
Psychosocial Impact
The stressors experienced by people with MS are likely to be wide ranging and
diverse due to the unpredictable nature of symptomatology and disease course, and
the limited treatment options. These stressors may comprise dealing with physical
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limitations, the psychological strain of maintaining a positive self-concept,
adjusting to role changes, and confronting ones own mortality (Larsen, 1990).
Partners of People with MS
Partners of people with MS are also likely to experience wide-ranging stressors
related to the illness. For example, they may become the sole income earner for
their family, they may experience sadness and disappointment related to their
partner's difficulties, and may grieve for the future they had planned that is no
longer attainable. Also, many are involved in their partners care (Pakenham,
1998; Schofield, Herrman, Block, Howe & Singh, 1997). Even when other people
are available to provide care, partners almost exclusively carry the burden of care
in the home (Carton, Loos, Pacolet, Versieck & Vlietinck, 2000). This may
require lifestyle adjustments and added pressures. Indeed, while being a partner or
a carer is stressful, people who are both partners and carers to people with MS are
likely to more distressed than people who fill only one of these roles (Aronson,
1997).
Part of the stress experienced by people with MS and their partners may be due toimpact of MS on social functioning. For example, symptoms of MS may restrict
lifestyles resulting in changes to social networks (Bartels DesRosier, Cantanzaro &
Piller, 1992). The social activities of both people with MS and their partners
outside the relationship may be constrained, especially if the person with MS is
dependent on their partner for care due to motor difficulties, cognitive impairment
or other MS symptoms. Partners may be less able to take part in satisfying
activities over a number of life domains due to physical limitations. For example,
partners may need to reduce or cease employment, or they may have to give up a
leisure pursuit due to the demands of caregiving.
Intimate Relationships
Some of the stress experienced by partners may also be explained by the effect of
MS on intimate relationships. MS may impact intimate relationships through its
effect on personality and sexual dysfunction. Personality change is common in MS
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(McIntosh-Michaelis, Roberts, Wilkinson, Diamond, McLelllan, Martin &
Spackman, 1991) and may result in altered interpersonal functioning. This may
cause distress for the partner who is faced with caring for someone who may be
markedly different from the person they once knew. Consistent with this, research
indicates that partners generally experience more distress as a result of the
psychological rather than physical incapacity of their partner with MS (Miller,
Berrios & Politynska, 1996).
Sexual dysfunction is also common (Dupont, 1996). Difficulties may include lack
of orgasm, impotence, disturbances of sensation, and lack of libido that are more
common in males (Burnfield & Burnfield, 1982; Dupont, 1996). These difficulties
have implications for partners' sexual functioning. In evidence of this, partners also
show high levels of sexual dysfunction, especially in the areas of avoidance and
infrequency of sex (Dupont, 1996). This is especially problematic as sexual
functioning is positively associated with the quality of intimate relationships
(McCabe, McDonald, Deeks, Vowels & Cobain, 1996). Thus, people with MS
and their partners are likely to experience relational difficulties.
Given the potential strains placed on the relationships of people with MS, it is not
surprising that relationship dissatisfaction is common. Between a quarter and a
third of people with MS and their partners report some dissatisfaction with their
relationship, and partners are more dissatisfied than people with MS (Dupont,
1996). This dissatisfaction has been linked to symptoms of MS, and marriage
breakdown is positively associated with increased physical disability (Hammond,
McLeod, Macaskill & English, 1996). However, other research indicates that the
strain of having a partner with MS is more related to the subjective experience of
caregiving than objective illness characteristics (OBrien, Wineman, & Nealon,
1995).
While MS negatively effects many relationships, not every intimate relationship is
unsuccessful or unhappy. Indeed, some people report improvement in their
relationships. McCabe et al (1996) found that about one third of people with MS
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reported closer relationships, and about one third indicated no change. Thus, it
may be that while MS can negatively change interpersonal relationships, it can also
result in improvements in other relationships, and can have a negligible impact on
others. Further research is needed to explore the impact of MS on the functioning
of intimate relationships, however this is beyond the scope of this thesis.
Summary
MS is a relatively common disease of the central nervous system with wide-ranging
and unpredictable symptoms and disease course. The disease potentially provides
a complex set of stressors for both the person with MS and their partner. These
can potentially result in relationship dissatisfaction, and reduced subjective quality
of life. The following chapters explore the influence of both objective life
conditions such as illness, and subjective factors such as personality and coping, on
quality of life. It will be demonstrated that the way in which people interpret and
cope with life events influences how people feel about their lives more than
objective life conditions, such as illness. Thus, research based on subjective factors
is likely to be beneficial to people with MS and their partners who are forced tomaintain their quality of life in the face of potentially stressful life circumstances.
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CHAPTER 3
SUBJECTIVE WELL-BEING, LIFE SATISFACTION AND SUBJECTIVEQUALITY OF LIFE
How people feel about themselves and their lives has been the focus of much
research. It is an area laden with definitions. Subjective well-being, life
satisfaction, and subjective quality of life are some of the many terms used by
researchers to describe how people feel about themselves and their lives.
Colloquially, these terms are often used interchangeably. Theoretically they have
distinct meanings yet opinions continue to differ on the use of this terminology.
For the purpose of this thesis the following taxonomy will be adopted.
Subjective Well-Being
Subjective well-being is the most global term used to describe how people feel
about their lives. It includes peoples emotional responses, satisfaction with life
domains, and global judgement of life quality (Diener, Suh, Lucas & Smith, 1999).Thus, subjective well-being comprises measures of cognition (satisfaction) and
affect (positive affect) (Cummins, 2000). The cognitive component of subjective
well-being can be described in two ways: life satisfaction and subjective quality of
life.
Life Satisfaction
Life satisfaction refers to a single judgement concerning satisfaction with ones life
based on the difference between ones circumstances and an internally imposed
standard (Cummins & Nistico, in press). This is measured by asking respondents a
single question: how do you feel about your life as a whole? (Andrews &
Whitey, 1976). This provides a global measure of how people feel about their
lives.
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Subjective Quality of Life
Subjective quality of life is defined as an evaluation of life satisfaction across a
number of life domains. This differs from objective quality of life, which is an
evaluation of a life in relation to externally imposed objective standards such as
where people live, their income or occupation. Evaluations of subjective quality of
life are therefore determined by an interaction of personal values, life conditions,
and life satisfaction (Felce & Perry, 1995). Such an approach considers subjective
quality of life to be composed of discrete life domains.
There is no agreement as to the number of domains that comprise subjective
quality of life. Cummins (1999) defines quality of life as the aggregate of the seven
domains of material well-being, health, productivity, intimacy, safety, community
and emotional well-being. However, additional life domains, such as spiritual well-
being, leisure and usefulness may also be important to people living under
particular circumstances. A life domain of independence may be especially
relevant to people with disabilities. A recent study of the aspirations of over four
hundred and forty-four people with disabilities in Victoria found that independencewas a major aspiration of people with disabilities (Johnson, 2000). The author of
the study defined independence as the ability to pursue their goals and aspirations
(p31) and concluded that for people with disabilities, if quality of life were to be
boiled down to one word, it would be independence (p. 16). However, such
research does not elucidate the importance of independence to people with
disability relative to people without disability, nor does it establish whether this
domain of life is independent of the other life domains.
The measurement of discrete domains of quality of life has the potential to provide
much more information about individual evaluations than the global approach. For
example, the relative importance of each domain varies between individuals, and
some domains have a consistently stronger influence on subjective quality of life
than other domains (e.g. Mellor, Cummins & Loquet, 1999). Thus, some domains
account for a larger proportion of subjective quality of life than others. The
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domain of 'intimacy', regarding relationships with family and friends, is such a
domain. This domain is consistently judged both the most important and the one
from which most satisfaction is derived (Mellor, Cummins & Loquet, 1999).
Information regarding different life domains is most useful for improving
individuals subjective quality of life. Cummins (1999) proposes that deficits in
subjective quality of life incurred by disability or disease may be offset by the
positive experiences within other life domains. For example, improvements in the
domain of intimate relationships can counter dissatisfaction with other life domains
(Mellor, Cummins & Loquet, in press). This has implications for people with MS
and their partners who often report dissatisfaction with intimate relationships and
suggests that interventions aimed at improving these relationships will likely be
more beneficial to subjective quality of life than interventions aimed at other
domains.
Summary
Three terms used to describe how people feel about their lives were discussed:subjective well-being, life satisfaction and subjective quality of life. Each term
describes a different aspect and measurement of the construct. This thesis is
concerned with subjective quality of life as it potentially provides the most
information regarding different facets of satisfaction with life and subsequently
avenues for improving how people feel about their lives. The next two chapters
explore both the objective and subjective influences on subjective quality of life.
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CHAPTER 4
THE INFLUENCE OF OBJECTIVE LIFE CONDITIONS ON
SUBJECTIVE QUALITY OF LIFE
Life circumstances, or objective life conditions, have a limited influence on
subjective quality of life. Objective factors account for only approximately 15% of
the variance in subjective well-being (Argyle, in press). This is evidenced by the
consistency of life satisfaction evaluations between people with very different
objective life conditions. For example, Cummins (1997b) found that college
students, adolescents attending high school and people with intellectual disabilities
reported no differences in life satisfaction despite substantial differences in their
objective life quality. Life satisfaction evaluations are so consistent that a gold
standard has been developed. Cummins (1995) compared sixteen western general
population studies on life satisfaction. Among these studies, fourteen different
measures of life satisfaction were employed. To enable comparison of the studies,
each studys life satisfaction scores were converted to a percentage of the
maximum score obtainable on the scale (SM). There was remarkably little
variation in mean sample life satisfaction scores between the studies despite littlecommonality in their methodologies. Following from this, it was proposed that the
life satisfaction gold standard be considered as 75.0 +/-2.5%SM. A later review by
the same author of two hundred and six articles concerning the topic of life
satisfaction confirmed a world range in life satisfaction of 60 to 80%SM and
approximated that the adaptive range was between 50 and 100%SM (Cummins,
1998b).
The consistency of life evaluations across different life circumstances suggests a
psychological mechanism that attempts to maintain subjective well-being within a
set range. The presence of a such a set point for subjective well-being was first
proposed by Headey and Wearing (1989) and is evidenced by the limited long-term
influence of negative events on subjective quality of life. For most people, negative
events tend to depress subjective quality of life only in the short term, such that
people tend to recover to their set point some time later (Cummins, in press).
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Adaptation level theory (Helson, 1964) partially explains the consistency of
subjective quality of life evaluations across markedly different life circumstances.
This theory proposes that subjective well-being is maintained through processes of
habituation and contrast. People compare current levels of stimulation to the level
of stimulation to which they have been previously accustomed. This results in a
shift of adaptation level. Extreme good fortune results in an upward shift of
adaptation level. Consequently, many of the ordinary life pleasures seem more
neutral. Highly negative events, on the other hand, cause a downward shift in
adaptation level such that previously neutral events now seem pleasurable
(Brickman, Coates & Janoff-Bulman, 1978). However, this mechanism can be
defeated by chronic life conditions that impose a burden that is too strong to allow
for adaptation (Cummins, 2000). As discussed previously, MS can induce a wide
range of stressors. Thus, MS potentially imposes a burden that is too strong to
allow for adaptation and can result in decreased subjective quality of life.
The Influence of Multiple Sclerosis on Subjective Quality of Life
MS is a life condition that can potentially negatively effect subjective quality of life.
People with MS commonly report a lower life satisfaction than both people
without illness (Canadian Burden of Illness Study Group, 1998; Gulick, 1997;
Nortvedt, Riise, Myhr & Nyland, 1999). They also report a lower satisfaction with
life than people with other chronic illnesses such as inflammatory bowel disease
and rheumatoid arthritis (Rudick et al, 1992), and epilepsy and diabetes (Hermann
et al, 1996). It has been suggested that some factors of MS uniquely contribute to
lowered quality of life. These include the unpredictability of attacks, fear of
progression and neuro-behavioural symptoms (Ko Ko, 1999).
There is some debate regarding the influence of the physical symptoms of MS on
subjective quality of life. While, those living a longer time with MS are likely to
have increased levels of disability (Barnwell & Kavanagh, 1997), adjustment to MS
is not necessarily related to a longer disease duration (Barnwell & Kavanagh,
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1997), nor disability severity (Aronson, 1997; Barnwell & Kavanagh, 1997;
Burnfield & Burnfield, 1982). However, quality of life may be influenced by the
course of the illness. For example, decreased quality of life is associated with a
more progressive disease course (Pfennings et al, 1999). The previously discussed
habituation and contrast process that act to maintain subjective well-being may
explain these seemingly inconsistent findings. While, individuals may be able to
adjust to disability from other disease courses through habituation and contrast,
this process may be defeated by a progressive disease course that is characterised
by an unpredictable and unrelenting deterioration in physical ability. Individuals
may be unable to restore normal levels of subjective well-being before further
deterioration is experienced.
It is likely that partners of people with MS also have lowered subjective quality of
life due to the complex nature of the stressors they can experience. Consistent
with this, carers of people with MS experience compromised life satisfaction and
psychological distress which is lower, but positively correlated with their care
receivers psychological distress (Pakenham, Stewart & Rogers, 1997). Caregivers
of people with other illness also experience decreased subjective quality of life.This has been found to be three standard deviations below the base score of the
normative range (Cummins, 2001). It was concluded from this review of research
on the quality of life of carers that caregivers of severely disabled people are at
extreme risk of being highly stressed, clinically depressed and with a subjective
quality of life that is way below normal (Cummins, 2001, p 24). However, as
discussed earlier, partners may be even more likely than carers to be negatively
affected by MS. This may be due to the physical symptoms of MS, the way in
these symptoms constrain ones lifestyle, and the psychological toll of caregiving
and living with the illness.
Assessing Quality of Life in MS
Few studies have explored the process whereby MS exerts its influence on
subjective quality of life. Instead, previous research on subjective quality of life has
generally utilised subjective quality of life assessments as outcome measures, to
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assess treatment effectiveness (Vickery, Hays, Harooni, Myers & Ellison, et al,
1995). Illness specific measures, such as the Multiple Sclerosis Quality of Life
Instrument (Vickery et al, 1995) and the Multiple Sclerosis Quality of Life
Inventory (Fisher et al, 1999), have been developed with this aim in mind. These
are self-report instruments that ask a series of questions to assess the impact of MS
on physical health, emotional well-being, social functioning, cognitive functioning,
sexual functioning, health distress, and overall quality of life.
More general health related quality of life measures have also been developed.
These measures comprise physical, mental and social health measures. Health
related quality of life measures that are regularly used with people with MS include
the Medical Outcome Short Study Form-36 (Ware, Snow, Kosinski & Gandek,
1993), the Disability and Impact Profile (Laman & Lankhorst, 1994).
These two kind of measures assess health status and the impact of illness on
lifestyles and emotional well-being. These instruments specific to people with
illness are not useful when comparing people with MS to other groups of people.
Also, the Disability Impact Profile and the Multiple Sclerosis Quality of LifeInventory combine objective and subjective evaluations of factors thought to
influence quality of life, including measures of MS based on physical symptoms.
This is problematic because, as previously discussed, objective circumstances and
subjective experiences differentially effect quality of life. The current research
utilises a self-report measure of the impact of MS such that only subjective factors
are included in the thesis. The effects of objective and subjective factors are
therefore differentiated. Also, the thesis utilises a generic measure, rather than an
illness specific measure, of subjective quality of life so that different groups of
people with and without illness can be compared.
Summary
Objective life conditions normally have only a limited influence on subjective
quality of life. Evaluations of subjective quality of life are remarkably consistent
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across varying life circumstances. The existence of a mechanism that keeps
subjective quality of life at a set point has been proposed. This mechanism may
involve processes of habituation and contrast. However, this mechanism can be
defeated by chronic life conditions that impose a burden that is too strong to allow
for adaptation. MS potentially imposes such a large burden both for people with
MS and their partners. Research is needed that clearly differentiates between
objective and subjective influences, and delineates the psychological factors and
processes that influence the subjective quality of life of people with MS. Such
research will assist interventions aimed at improving the quality of life of people
with MS by highlighting potential targets for effective intervention.
The following chapter explores the various psychological factors that have been
associated with subjective quality of life. These are then combined into a model
that describes the mechanism by which subjective quality of life is maintained in the
adaptive range of 50 to 100%SM proposed by Cummins (1995).
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CHAPTER 5
THE INFLUENCE OF PSYCHOLOGICAL FACTORS ON SUBJECTIVE
QUALITY OF LIFE
Various psychological factors have been associated with subjective quality of life.
This chapter reviews the current state of research regarding the influence of these
factors. The variables most consistently related to subjective quality of life are
personality, positive cognitive biases in self-esteem, primary control and optimism,
secondary control and perceived social support. These will now be described in
more detail in relation to previous research and Multiple Sclerosis. A model is then
proposed to explain the process whereby these factors interact to maintain
subjective quality of life.
Personality
Personality can be defined as a complex system of internal constructs (Smith &
Vetter, 1998) that have a strong genetic link. Tellegen et al. (1998) found, in their
study of monozygotic and dizygotic twins reared apart and together, that onaverage about 50% of measured personality diversity could be attributed to genetic
diversity. They concluded that environmental influences generally play a very
modest role in the determination of many personality traits.
The personality traits of extraversion and neuroticism have received the most
attention in relation to subjective well-being. While, extraversion traits contribute
to positive enjoyment without reducing the unpleasantness of adverse
circumstances, neuroticism traits predispose one to suffer more acutely from
misfortunes, without diminishing positive experiences (Costa & McCrae, 1980).
These stable traits predispose people to experience moderately stable levels of
favourable and adverse life events and moderately stable levels of subjective well-
being (Headey & Wearing, 1989). Specifically, decreased neuroticism and
increased extraversion are consistently associated with increased subjective quality
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of life for both people with illness (Gurizerath, Connelly, Albert, & Knebel, 2001;
Hyland, Bot, Singh, & Kenyan, 1994; Yamaoka, et al,1998) and people without
illness (Francis & Bolger, 1997; McCrae & Costa, 1991; Pastuovic, Kolesaric, &
Krizmanic, 1995).
Extraversion and neuroticism have been strongly linked to trait positive and trait
negative affect (Fogarty et al, 1999), which also predict subjective well-being.
Indeed, Watson and Clark (1984) argue that measures of negative affect,
neuroticism and other apparently diverse personality scales are in fact measures of
the same stable and pervasive trait. Trait positive and negative affect can be
thought of as pervasive affective states that influence responses to situations (Clark
& Watson, 1991). Trait affect reflects differences in negative mood and self
concept (Watson & Pennebaker, 1989). Individuals high in negative affect are
more likely to experience distress and dissatisfaction at all times and across
situations, even in the absence of overt stress (Watson & Clark, 1984). Trait
positive affect reflects differences in energy levels, excitement and enthusiasm
(Watson & Pennebaker, 1989). Positive affect may buffer the individual from
harmful effects of stress by influencing coping strategies, so that individuals high in positive affect are less affected by stressors (Fogarty et al, 1999).
Personality and Multiple Sclerosis
The association between subjective well-being and personality may be confounded
for people with MS by emotional disturbance and cognitive impairment.
Emotional disorders are more common in MS than in conditions that produce
roughly equivalent degrees of physical disability, such as rheumatoid arthritis,
spinal cord injury and muscular dystrophy (Rao, Huber & Burnstein, 1992).
Common emotional disturbances include euphoria and depression. These
emotional changes seem to have a specific temporal distribution. The earlier stages
of the disease are associated with depression that is likely to reflect the emotional
toll of living with MS (Gilchrist & Creed, 1994). The later stages of the disease
however are associated with euphoria which likely results from increasing cognitive
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disturbance in association with widespread cerebral involvement (Rao, Huber &
Burnstein, 1992).
Many people with MS also experience cognitive impairment. McIntosh-Michaelis
et al (1991) found cognitive impairment in 46% of one hundred and forty-seven
people with MS, memory impairment in 34% and failure on tests of frontal lobe
function in 33%. Cognitive impairment may occur very early in the course of the
disease (Rao, Huber & Burnstein 1992). It is likely that these changes affect the
subjective quality of life of people with MS, and those close to them, in a number
of ways. Changes in personality characteristics may change the way in which
individuals perceive and cope with stressors, and may cause frustration and
depression. This may result in new conflicts in interpersonal relationships.
These changes in emotional and cognitive functioning may then alter the
relationship between personality and subjective quality of life for people with MS
in comparison with other people. Euphoria and cognitive impairment may also be
associated with a loss of personal insight and judgement that may confound reports
of subjective well-being and quality of life for the person with MS.
Summary
The personality traits of extraversion and neuroticism have been consistently
associated with subjective quality of life. These are closely linked to positive and
negative affect. It is likely that personality influences subjective quality of life in
two ways. Personality can influence the perception of stressors and can effect
coping efforts. The influence of personality on subjective quality of life is likely to
be compromised for people with MS who experience emotional disturbance and
cognitive impairment that may result in personality changes.
Positive Cognitive Biases
Positive cognitive biases have been associated with subjective quality of life.
Specifically, research suggests that self-esteem, control, and optimism contribute to
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the maintenance of satisfaction with life. Taylor and Brown (1988) claim that most
individuals possess a very positive view of the self and that these positive views are
associated with a variety of positive effects such as positive mood, social bonding,
higher motivation, greater persistence, and ultimately greater success. It has been
proposed that satisfaction of the need for self-esteem, primary control and
optimism is dependent upon the presence of positive cognitions regarding these
aspects of the self (Cummins & Nistico, in press).
The basis of these self-enhancing positive cognitive biases probably lies in the use
of social comparison. Individuals tend to overestimate their own good qualities
relative to their assessment of others qualities (Brown, 1986). Cummins and
Nistico (2001) claim that encountering failure may maintain the optimal upper
boundary of positive cognitive bias. However, excessive failure may serve to
lower subjective quality of life. This thesis proposes that a coping mechanism
mediates between positive cognitive biases and subjective quality of life. The three
positive cognitive biases are now addressed in turn.
Self EsteemSelf-esteem is defined as liking and respect for oneself (Rosenberg, 1979 p45).
Whilst all people display a pervasive tendency to cast themselves in more positive
and less negative terms than they portray other people, persons with high self-
esteem are most likely to offer a more flattering portrayal of their self (Brown,
1986). Taylor and Brown (1998, 1994) claim that such self-aggrandizing views
are linked to psychological well-being. Cummins and Nistico (in press) reviewed
six studies concerning self-esteem and life satisfaction and found that self-esteem
was strongly correlated with life satisfaction. This may be due to a direct effect on
well-being, or indirectly through coping efforts. In evidence of this, self-esteem
has been linked with primary control strategies in people with MS (OBrien, 1993)
and with the use of effective coping strategies in people without illness (Schutz,
1998).
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Control
Control has been consistently associated with subjective quality of life in two ways:
as a generalised belief in personal competence, or as a positive cognitive bias, and
as a coping mechanism once a stressful encounter has taken place. A definition of
stress is integral to these functions of control. Stress is defined here as a
relationship between the person and the environment that is appraised by the
person as taxing or exceeding his or her resources and as endangering his or her
well-being (Folkman, 1984, p. 840). These two functions of control are now
discussed in more detail
Control as a generalised belief in personal competence can be thought of as a belief
concerning the extent to which he or she can control outcomes of importance. In a
specific stressful encounter, control can also be thought of as a situational appraisal
of the possibilities for control. Existing as a belief, control does not need to be
exercised for it to be effective and control does not need to be real, just perceived,
for it to influence the aversiveness of a stressful encounter (Thompson, 1981).
Thus, generalised beliefs of control affect whether situations are perceived asstressful. Situations will be perceived as less stressful if the individual believes they
are controllable. Those with a stronger sense of personal control, mastery, or self-
efficacy cope better with chronic illness. They are more likely to make desired
behaviour changes and have better psychological well-being (Thompson et al,
1998).
Control as a coping mechanism can be viewed as a cognitive mediator of a stressful
transaction and its adaptational outcome (Folkman, 1984). Thus, once a situation
is assessed as a stressor, coping efforts mediate the effect of this stressor on
subjective quality of life. Coping can be defined as constantly changing cognitive
and behavioural efforts to manage specific external and/or internal demands that
are appraised as taxing or exceeding the resources of the person (Lazarus &
Folkman, 1984, p. 141). Previous research has identified many different ways that
individuals cope with stressful situations. Various typologies have been proposed
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to describe the functioning of control. These include: primary and secondary
control, problem and emotion focused coping, and behavioural, cognitive,
informational and retrospective control. These are now described.
Primary and Secondary Control
The primary and secondary typology of control mirrors the two functions of
control. Primary control can be generally defined as a belief that one can influence
existing realities (Wiesz et al., 1984) and is akin to the aforementioned positive
cognitive bias of control. An example of this is the belief that one will loose weight
by exercising. Secondary control, on the other hand, can be defined as accepting
or adjusting to ones situation, such as when one is having trouble loosing weight.
Secondary control involves cognitive strategies such as goal disengagement and
social comparison. For example, telling oneself that loosing weight is not
important, or by comparing oneself to heavier individuals.
Other researchers (Heckhausen & Schulz, 1995) have defined primary and
secondary control based principally on their targets. They define Primary control
as focussing on the external world, and secondary control as focussing on the self.These two definitions of primary and secondary control are similar. However, this
thesis adopts the first definition of primary and secondary control proposed by
Wiesz et al. (1984). This definition focuses on the function rather than the target
of control. Other typologies of control have been attempted along similar
conceptual lines.
Problem and Emotion Focussed Coping
Folkman and Lazarus (1980) define control as a coping mechanism with two major
functions: management of the problem that is causing the distress (problem-
focused) and regulation of emotion or distress (emotion-focused). Whilst this
typology is similar to that of primary and secondary control, similarly to Wiesz et
al.s (1984) primary and secondary control definition, it is focused on the target
rather than the function of control and arguably neglects generalised beliefs in
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personal competence. This function, as previously outlined, can also act to
mediate potentially stressful transactions.
Behavioural, Cognitive, Informational, and Retrospective Control
Thompson (1981) proposed another typology of control. This is a fourfold
typology of control consisting of: behavioural control, cognitive control,
information, and retrospective control. Behavioural control is defined as a belief
that one has a behavioural response available to affect the aversiveness of an event.
Cognitive control is defined as the belief that one has a cognitive strategy available
that can affect the aversiveness of an event. Informational control refers to a
communication delivered to a person who is the potential recipient of an aversive
event. Retrospective control refers to beliefs about the causes of the event. This
typology is very similar to the primary and secondary typology, with the addition
of information and retrospective control. These additions are arguably
superfluous. Informational control can be viewed as a factor external to the
individuals coping, and as a component of the stressor, which may or may not
translate into beliefs in personal control and coping efforts. Retrospective control
is better conceptualised as a type of primary control. For example, by comparingoneself to heavier individuals after failing to loose weight, one can re-interpret
failure as success in order to gain retrospective control. Thus, retrospective
control can be viewed as beliefs in personal control (primary control) after coping
efforts (secondary control) have been utilised.
In summary, the typology of primary and secondary control is adopted to
conceptualise the function of control. This conceptualisation is the only one of the
three discussed that incorporates the two functions of control. These are a coping
mechanism once a stressful encounter has taken place, and a generalised belief in
personal competence. The primary and secondary control typology is also the only
one to focus exclusively on the action of control rather than the target.
Considerable research has explored the relative influence of primary and secondary
control on subjective quality of life.
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The Adaptive Outcomes of Primary and Secondary Control
The potential for primary and secondary control and the relative influence of each
on subjective quality of life depends on the particular person and the specific type
of encounter. As such, there may be no universally good or bad coping process,
however there may be some that are more often better or worse than others
(Lazarus, 1993). The influence of primary and secondary control on subjective
quality of life in different life circumstances is now discussed. For the purposes of
this discussion, the term adaptive is used to describe a function that has a positive
influence on subjective quality of life.
The Uncontrollability Model (Koller & Kaplan, 1978) claims that perceptions of
uncontrollability and decreased motivation for control can fuel one another in a
downward spiral, such that in some situations people abandon the quest for
control. However, this is unusual. Control is so valued that the quest for it is
rarely abandoned. Individuals are instead likely to shift from one method of
control to another (Rothbaum, Weisz & Snyderl, 1982) and strive to establish a
balance between primary control and secondary control (Lazarus, 1981; Weisz,Rothbaum & Blackburn, 1984). However, sudden and substantial losses in
primary control are likely to be particularly challenging in that they do not allow
individuals time to adapt and compensate through secondary control before
significant loss occurs. Over time, crises such as these can be overcome as control
is re-established and elaborated (Heckhausen & Schulz, 1995).
The influence of primary and secondary control on subjective quality of life is
effected by the potential for utilisation. Throughout the course of life, potential for
primary control and secondary control undergoes major changes. The potential for
primary control may be constrained by health factors, social institutions, and
mental capacity (Heckhausen & Schulz, 1995). Also, an individuals background
and past experience may determine the relative emphasis placed on each type of
control (Rothbaum et al., 1982). For example, Western societies view primary
control as preferable to the use of secondary control strategies. However,
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collectivist cultures, such as Asian cultures, stress close alignment with others and
discourages attempts to make realities fit ones own wishes (Weisz et al., 1984).
Thus, the influence of primary and secondary control on subjective quality of life is
not absolute, and depends on other factors such as the desirability or availability of
control.
Two major models have been proposed to explain the adaptive outcomes of
primary and secondary control, and the process of re-establishing control in
response to a crisis. These are the Discrimination Model (Folkman, 1984;
Thompson et al, 1998) and the Primacy/Back-up Model (Heckhausen & Schulz,
1995). Recent research also suggests a third possibility related to the balance
between primary and secondary control.
The Discrimination Model (Folkman, 1984; Thompson et al, 1998) proposes that
perceptions of primary control are adaptive when the situation is controllable, and
acceptance (or secondary control) is more adaptive when the situation is not.
Thus, secondary control acts to compensate for losses in primary control to protect
emotional well-being. In contrast, the Primacy/Back-Up Model (Heckhausen &Schulz. 1995) claims that primary control is the more adaptive strategy regardless
of the controllability of the situation. The function of secondary control in this
model is to compensate for low primary control and help bolster feelings of overall
control in all types of situations. It is unclear whether the Primacy/Back-Up Model
or Discrimination Model best describes the adaptive outcome of primary and
secondary control.
According to the Primacy/Back-Up Model, Thompson et al (1998) claimed that
primary control is associated with good psychological outcomes even in very low
control circumstances. Consistent with this, reductions in primary control and
increased use of secondary control have been found to have negative
consequences. Ntterland and Ahlstrm (1999) found, in a study of individuals
with Muscular Dystrophy and Post-polio Syndrome, that problem-focused
(primary control) strategies were not used frequently and that this was commonly
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associated with feelings of helplessness and hopelessness. Aikens, Fischer, Namey
et al (1997) also found that a high rate of escape avoidance coping, a type of
secondary control, was possibly predictive of future distress in people with MS
with mild physical disability.
However, in contrast with the Primacy/Back-Up Model, perceptions of primary
control may be maladaptive in situations where primary control is impossible or
very unlikely. Also, recent research found that secondary controls role in positive
adjustment comprises more than just acting to compensate for low primary control
(Heeps, 2000). A number of studies support this assertion. For example, Affleck,
Tennen, Pfeiffer and Fifeld (1987) found an association between disease severity
and the adaptiveness of perceptions of control in Rheumatoid Arthritis patients.
Perceiving control over symptoms was unrelated to mood in patients with mild
symptoms, but was significantly associated with positive mood in patients with
moderate to severe symptoms. In contrast, perceiving primary control over the
course of the disease was marginally associated with positive mood in patients with
mild disease, but significantly associated with negative mood in patients with
severe disease. Thus, as the disease worsened, perceiving control over presumablyuncontrollable factors (disease course) was emotionally maladaptive. Burish et al
(1984) similarly found that an external locus of control, reflecting relinquished
perceptions of primary control, was adaptive for a sample of cancer patients. Eitel,
Hatchett, Friend, Griffin and Wadhwa (1995) also found a negative relationship
between control over treatment options, and emotional well-being with increases in
end-stage renal disease severity. Chipperfield, Perry, and Menec (1999) found that
secondary control strategies became increasingly adaptive with age and declining
health, and presumably decreased opportunities for primary control. These
findings highlight that, in some situations, individuals prefer control in hands of
people able to minimize future danger, such as health professionals. An external
orientation, reflecting acceptance of a loss of primary control, may reduce distress
associated with a lack of control and increase the likelihood that patients will
follow the advice of medical staff regarding treatment. Eitel et al. (1995) proposed
that only when an illness becomes severe or poses a serious threat to the individual
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do perceptions of control over treatment negatively effect psychological
adjustment.
These findings are consistent with Folkmans (1984) assertion that when
individuals prefer not to have control, increased choice or participation may
heighten stress (Folkman, 1984). They are also consistent with the Discrimination
Model that claims that primary control beliefs may become a disadvantage when
they have a low probability of success. Thus, it may be that high beliefs in primary
control are adaptive as long as they remain untested (Thompson et al, 1988).
So far, these models have described the adaptive value of absolute levels of
primary and secondary control. However, recent research suggests that the
availability of strategies, as well as the use of strategies, is related to adaptive
functioning. Optimally adaptive functioning is reported by people unaffected by
chronic illness who have a repertoire of control strategies involving relatively high
levels of both primary and secondary control (Heeps, 2000). People with a control
imbalance, that is average or above average levels of one control process but below
average of the other, report lower levels of positive psychological adjustmentcompared to people with average or above average levels of both (Heeps, 2000).
Taken together with the research supporting the Discrimination Model, this recent
research suggests that the availability of high levels of primary and secondary
control strategies to an individual and the use of these strategies in accordance with
the Discrimination Model are related to optimally adaptive functioning.
The research discussed so far has focused on the adaptive functioning of individual
use of primary and secondary control. However, couples tend to react to disease
as a unit, such that their use of coping strategies (emotion or problem focused) is
matched and their well-being is highly correlated (Pakenham, Dadds, & Terry,
1995). Individual coping efforts may effect both their partners coping efforts and
their subjective quality of life. The limited research on this topic suggests that the
similarity of coping between partners and the couples average levels of coping are
positively associated with well-being (Pakenham, 1998; Revenson, 1994). Thus,
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the relationship between partners use of primary and secondary control may also
be related to well-being.
Summary
Control has been associated with subjective quality of life in two ways: as a
positive cognitive bias of personal competence and as a coping mechanism once a
stressful encounter has taken place. The terms primary and secondary control
are used to describe these two processes. Research suggests that for individuals,
the availability of high levels of primary and secondary control strategies and a
preference for primary control unless the situation is uncontrollable are related to
optimally adaptive functioning. For people with partners, similarity in the use of
primary and secondary control with their partner and a high level of couple primary
and secondary control use may also be related to optimally adaptive functioning.
Optimism
Positive cognitive biases of optimism refer to a set of positive beliefs regarding
oneself in the future. Robinson and Ryff (1999) claim that perceptions of future
well-being, or optimism, are particularly subject to self-enhancement biases. Alsothey claim that self-deception is greatest under conditions of information
uncertainty and high motivation. Thus, relatively concrete information about the
future will serve to minimize such enhancement. An absence of relatively concrete
information about the future provides an ideal opportunity for envisioning the best
possibilities for ones self. The way individuals view their future and present may
also be motivated by their possible selves. These selves are the ideal selves that
we would much like to become. They are also the selves we could become and the
selves we are afraid of becoming (Markus & Nurius, 1986, p. 954). Possible
selves are important because they function as incentives for future behaviour and
provide an evaluative and interpretative context for the current view of self.
Research has documented diverse benefits of optimism. Optimism has been
negatively related to depression in MS (Fournier, de Ridder, & Bensing, 1999). It
has been related to adjustment and well-being in people with coronary heart disease
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(Scheier et al., 1989), and other people unaffected by chronic illness (Aspinwall
&Taylor, 1992). It has been proposed that optimism exerts its influence directly on
well-being (Aspinwall & Taylor, 1992) and through coping efforts. In relation to
this, optimism has most commonly been associated with a higher use of primary
control strategies (Aspinwall & Taylor, 1992; Friedman et al., 1992; Scheier et al,
1989; Strutton & Lumpkin, 1992). However, for people with MS, emotion-
focused coping has been found to mediate the impact of optimism on depression
(Fournier, de Ridder, & Bensing, 1999). Although these findings appear to
conflict, they are consistent with the Discrimination model of control (Folkman,
1984; Thompson et al, 1998), which claims that perceptions of primary control are
adaptive when the situation is controllable and that secondary control is more
adaptive when the situation is not controllable. Thus, optimists adopt adaptive
coping strategies dependent on the controllability of the situation. Consistent with
this, Scheier, Weintraub, and Carver (1986) found that optimists tend to adopt
strategies that are more effective when coping with stress.
The Adaptive Outcomes of Positive Cognitive Biases
While research discussed above has demonstrated the benefits of positive cognitive biases, Colvin and Block (1994) argue that there is insufficient evidence that
unrealistic optimism is positively related to mental health. They claim that
cognitive distortions about oneself and ones social surroundings can not result in
adaptive behaviour over long periods of time in a world that provides feedback or
reacts on the individual.
Baumeister (1989) suggested a compromise between these seemingly
incommensurable views in his Optimal Margin Hypothesis. He proposed that
optimal psychological functioning is associated with a slight to moderate degree of
distortion in ones perception of the self and the world, such that there is an
optimal range for positively biased cognitions. Provided that cognitive biases are
maintained within some homeostatic range which prohibits the emergence of
delusions (defined as being beyond the normal adaptive range and severely
incongruent with reality), they constitute an adaptive mechanism for the
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maintenance of subjective quality of life. It is possible therefore, that such
positively biased cognitions constitute an adaptive mechanism that creates and
maintains mean population life satisfaction in the range of 50-100%SM.
In summary, positive cognitive biases in self-esteem, primary control and optimism
have been proposed to constitute an adaptive mechanism for the maintenance of
subjective quality of life. Furthermore, the current research proposes that
secondary control strategies act to maintain positive cognitive biases in an adaptive
range in the face of failure. When faced with stressful situations, secondary control
strategies act to accommodate the information so that subjective quality of life is
not decreased. These may include social comparison as proposed by Brown
(1986). The influence of positive cognitive biases on subjective quality of life may
be compromised for people with MS in a number of ways.
Cognitive Biases and Multiple Sclerosis
The maintenance of an optimal margin of cognitive distortion may be problematic
for people with MS due to unpredictable changes in physical and mental ability.
The individual may be frequently presented with feedback inconsistent with their positively biased cognitions. As their ability levels fluctuate so too does their
optimal margin of cognitive bias. This necessitates constant restructuring of
cognitive biases. For example, a person with MS may believe themselves to be a
good mother. However, this belief may be challenged by fluctuations in their
physical abilities, which restricts them from carrying out tasks they believe a good
mother should carry out. While failure experiences may maintain the upper
boundary of positive cognitive biases (Cummins & Nistico, in press), frequent
feedback from the external environment that is inconsistent with positively biased
cognitions lowers the optimal upper boundary of cognitive biases more than is
adaptive for people with MS. This may result in a reduction of positively biased
cognitive distortion that has a negative impact on subjective quality of life.
Self-Esteem and MS
Consistent with the hypothesised effect of failure experiences on positive cognitive
biases, people with MS have a self-concept that is more negative than people
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without chronic illness that tends to remain stable after an initial adjustment period
of approximately ten years (Brooks & Matson, 1982). It seems that the secondary
control strategies maintaining positive cognitive biases in the face of failure are
defeated following diagnosis of MS, but that over time positive cognitive biases are
re-established. However, it is also likely that positive cognitive biases are never
fully restored to levels comparable to those without chronic illness (Brooks &
Matson, 1982).
Primary Control and MS
As discussed, positive biases of primary control are not always adaptive. Indeed,
the Discrimination Model of control (Folkman, 1984; Thompson, et al, 1998)
proposes that for people in uncontrollable situations, secondary control may be
more adaptive than primary control. However, there is limited research regarding
the adaptive function of cognitive biases of primary control specifically regarding
people with MS. Pakenham (1999) found that the use of problem-focused coping
(primary control) was associated with better adjustment to multiple sclerosis than
the use of emotion-focused coping (secondary control). Other research that has
looked at control in relation to MS exacerbation found that people with MS tendedto favour emotion-focused coping techniques whilst in periods of illness
exacerbation, and problem-solving or the use of social support in periods of
remission (Warren, Warren & Cockerill, 1991). Thus, the limited research
suggests that people with MS use primary and secondary control in the way
described by the Discrimination Model and that this is adaptive. They use primary
control in times when the situation is controllable and secondary control when the
situation is less controllable.
However, the ability of people with MS to maintain primary control and mediate
their stress through secondary control may be compromised due to the
unpredictable nature of their illness. Individuals may be faced with variations in the
adaptiveness of primary and secondary control due to their fluctuating ability to
control life situations. For example, behavioural efforts to seek control may be
limited by disability and reliance on others that varies between illness remission and
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exacerbation. Generalised beliefs in personal control may also be compromised by
the unpredictable nature of MS, rendering the individual with little information as
to the future course of their illness, to the difficulties that they may face, or to their
ability (physically and emotionally) to deal with these difficulties. Consistent with
this, an association between uncertainty regarding the future and psychosocial
adjustment has been found in people with another chronic condition, diabetes
(Landis, 1996). It therefore seems likely that people with MS may be at risk of
using primary and secondary control in less than optimal ways, which may result in
lowered subjective quality of life.
Optimism and MS
Whilst positive cognitive biases regarding the present are likely to be diminished,
especially in people who have been newly diagnosed, the research previously
outlined suggests that positive cognitive biases regarding the future (optimism) are
likely to be large in people with MS who have little concrete information about the
future. As discussed, self-deception is greatest under conditions of information
uncertainty and high motivation. MS is an extremely unpredictable condition. As
such, MS is likely to provide circumstances of information uncertainty. People withMS are likely to be highly motivated to avoid a future possible self that may be
severely disabled and crippled by MS. Also, the individual may be unsatisfied with
their present self. Thus, MS is also likely to provide circumstance of high
motivation. These factors taken together suggest that positive cognitive biases
regarding the future are likely to be larger in people with MS than other people.
Consistent with this is Fournier, de Ridder & Bensings (1999) finding of
significant unrealistic optimism with regards to negative events in a sample of
people with MS. Unfortunately, these findings were not compared to people
without chronic illness. As individuals without chronic illness also exhibit positive
cognitive biases regarding the future (Brown, 1986), one cannot conclude based on
this information whether people with MS have greater biases of optimism than
other people. This thesis will explore this issue by comparing the magnitude of
optimistic bias between people with MS and people unaffected by chronic illness.
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Summary
Positive cognitive biases in self-esteem, primary control and optimism have been
proposed to maintain subjective quality of life within the range of 50 to 100% SM,
provided they are within the threshold for the optimal range of cognitive bias.
However, positive cognitive biases may affect the subjective quality of life of
people with MS differently than other people without chronic illness. It is likely
that people with MS experience more failure experiences that serve to decrease the
positivity of their cognitive biases and may experience difficulty mediating their
stress through secondary control. In contrast, people with MS are likely to
demonstrate greater bias in optimism than other people due to the unpredictable
nature of MS.
Perceived Social Support
Social support has also been positively associated with subjective quality of life
(Abbey, Abramis & Caplan, 1985; Holahan et al, 1996; Revenson, Schiaffino &
Gibofsky, 1991; Schaefer, Coyne & Lazarus, 1981). Several considerations are
necessary when assessing social support. Firstly, perceptions of availability of social support, rather than the use of social support, are related to well-being.
Thus, a measure of the perceived availability and value of social support is a more
sensitive indicator of its effects than objective measures. For example,
Cunningham McNett (1987) found that perceived availability of social support was
positively related to coping effectiveness in wheel-chair-bound individuals.
Schaefer et al. (1981) similarly found that perceived social support was more
strongly associated with well-being than objective measures of social networks in a
general population sample. They claimed that when objective measures of social
network size are used to indicate the benefits of social support, two questionable
assumptions are made. One is that any benefits are directly proportional to the size
of the network. The second assumption is that having a relationship is equivalent
to getting support.
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The second consideration necessary when assessing social support is that social
support can be characterised as either positive or problematic. Positive support is
characterised by social interactions that provide affect, affirmation, or aid.
Problematic support is defined as instances of social interaction that are perceived
as non-supportive, even though the providers actions may have been well
intended. Both positive and problematic support appeared to make independent
contributions to psychological well-being (Holahan et al, 1996; Revenson et al,
1991). In summary, when assessing the effect of social support on subjective
quality of life, it is necessary to use a subjective measure that is sensitive to both
potential positive and problematic aspects of social support.
There has been considerable debate regarding the association between stress,
perceived social support and subjective quality of life. Two explanations have been
proposed. The buffering hypothesis proposes that support buffers people from
stressful events. The second hypothesis proposes a direct effect: that social
support has a beneficial effect irrespective of whether people are under stress
(Cohen & Wills, 1985). The evidence for the hypotheses is now discussed.
Consistent with the stress-buffering hypothesis, social support has been shown to
have an impact on positive well-being for people under stress. Social support plays
an important role in coping and psychosocial adjustment in individuals and families
with MS (Weinert, 1988). Social support also has a substantial impact on positive
well-being for people with arthritis (Germano, 1996), and coronary heart disease
(Holahan et al, 1996). Social support enhances recovery, increases adherence to
treatment recommendations and promotes psychological adjustment (Revenson et
al, 1991). Abbey et al. (1985) also found support for the stress-buffering role of
social support for normal people experiencing different levels of stress. However,
consistent with the proposed direct effect, social support also has a beneficial effect
for people not under stress. For example, Schaefer et al. (1981) found a direct
positive association between perceived social support and emotional well-being in
their general population sample, but found no support for the proposed stress-
buffering effect of social support.
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Cohen and Wills (1985) claimed that this phenomenon is explained by the presence
of a threshold for social support. This threshold may change in response to
stressful life circumstances, such that the phenomenon of social support as a buffer
against life stressors simply reflects a heightened need, or threshold, for social
support. When people are under stress, people may require more social support or
feel the absence of social support more acutely. It is likely therefore that people
with MS require more social support than others in order to maintain their
subjective quality of life, especially during times of illness exacerbation.
In addition to exerting a direct effect on subjective quality of life, perceived social
support may also influence the perception of stressors. As discussed earlier, stress
is defined as an environment that is appraised as taxing or exceeding resources and
endangering well-being (Folkman, 1984). Social support can influence the
perception of a stressor by providing the individual with resources to deal with life
circumstances. With higher levels of resources, individuals with high levels of
perceived social support are likely to view fewer situations as exceeding their
resources than someone with low levels of perceived social support.
Perceived social support may also exert its effect on subjective quality of life
indirectly by effecting the use of secondary control strategies. Individuals with
high levels of perceived social support may utilise different secondary control
strategies than those low in perceived social support. Consistent with this
supposition, Holahan et al (1996) found that social resources were significantly
related to the use of coping strategies that were also significantly associated with
well-being in people with coronary heart disease.
In summary, perceived social support has been found to have a positive influence
on subjective quality of life. Perceived social support can be classified as two
types: problematic and positive. These differently influence subjective quality of
life. Thus, measures of social support need to be subjective and sensitive to the
potential problematic and positive effects of social support. It is likely that there is
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a minimum threshold for perceived social support. When people are under stress
this threshold rises such that they have a heightened need for social support. As
well as exerting a direct effect on subjective quality of life, it is proposed that
perceived social support may also influence the perception of stressors. A
discussion of the ways in which MS may effect social support follows.
Social Support and Multiple Sclerosis
While it is likely that people with MS have heightened social support needs, social
support may nevertheless be compromised for people with MS. Decreased social
support has been inversely associated with the length of illness (OBrien, 1993),
and increasing disability for people with MS (Stenager, Knudsen, & Jensen, 1991).
A decrease in perceived social support coupled with a heightened need for social
support will likely result in reduced subjective quality of life for people with MS.
Consistent with these propositions, Aronson (1997) found that interference by MS
with social activities is strongly associated with decreased subjective quality of life.
Perceptions of social support and social activity may decrease for people with MS
and their partners for a number of reasons. For example, physical disability may
restrict both the person with MS and their partners ability to maintain socialinteraction, and their potential increased reliance on others can alter relationships.
Many people with MS are unemployed. Between 50% and 80% of people with MS
are unemployed within ten years of disease onset (Ko Ko, 1999). Hammond et al
(1996) examined over two thousand people with MS in Australia, overall 50% of
men and 27% of women reported being unemployed and they found lower rates of
participation in the paid workforce in more disabled patients. People with MS are
also less likely to be employed than people with other chronic conditions such as
inflammatory bowel disease and rheumatoid arthritis (Rudick, Clough, Gragg &
Farmer, 1992). Unemployment can negatively affect social support and, in turn,
subjective quality of life. Consistent with this, unemployment has been significantly
associated with social support (OBrien, 1993) and with the reported quality of life
of people with MS (Aronson, 1997; Gulick, 1997).
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Partners of people with MS may also have compromised social support, as their
activities may also become restricted. Consistent with this, chronic illness research
of married couples shows that they spend more time with each other in the home
and less time in network relationships and activities outside the home (Bartels
DesRosier, Cantanzaro & Piller, 1992). Also, while intimate relationships
positively impact on subjective quality of life for people without illness (Diener et
al, 1999), the link between intimate relationships and subjective quality of life is not
as clear for people with chronic disability. Intimate relationships have been
positively associated with subjective quality of life of people with MS (Gulick,
1997). However, in a study of wheel-chair-bound individuals, Cunningham
McNett (1987) found that non-married subjects coped more effectively than
married subjects.
Summary
Perceived social support has been positively associated with subjective quality of
life. It is likely that there is a minimum threshold for perceived social support,
which increases in time of stress. Thus, this threshold is likely to be raised in
people with MS, such that they feel the absence of perceived social support moreacutely than other people. However, this increased need for social support is likely
coupled with decreased opportunities for social support through unemployment
and physical limitations. This is likely to have a negative impact on their subjective
quality of life.
Chapter Summary
The limited influence of objective life conditions and the consistency of life
satisfaction evaluations suggest that subjective quality of life is held at a set point
by a psychological mechanism. This chapter has so far reviewed and analysed the
current state of literature in regards to the psychological factors associated with
subjective quality of life and their relation to MS. The factors discussed were
personality, positive cognitive biases, social support and secondary control. The
following conclusions regarding these factors were reached.
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The personality traits of extraversion and neuroticism are associated with
subjective quality of life. These traits may influence subjective quality of life in two
ways. Personality can influence the perception of a stressor and can act to mediate
the negative impact of a stressor on subjective quality of life through coping
efforts. This influence of personality on subjective quality of life is likely to be
compromised for people with MS who experience emotional disturbance and
cognitive impairment that may result in changes in personality.
Positive cognitive biases in control, optimism, and self-esteem have been proposed
to maintain subjective quality of life within the range of