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

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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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 to stimulate 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.

LIST OF CONTENTS

LIST OF TABLES

LIST OF FIGURES

LIST OF APPENDICES

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 thesis reviews 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

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. This is 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

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

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

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

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 to impact 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

(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

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 to maintain their quality of life in the face of potentially stressful life circumstances.

CHAPTER 3
SUBJECTIVE WELL-BEING, LIFE SATISFACTION AND SUBJECTIVE QUALITY 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.

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 wellbeing, 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 independence was 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

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.

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 little commonality 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).

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,

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

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 Life Inventory 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

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).

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 on average 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 wellbeing (Headey & Wearing, 1989). Specifically, decreased neuroticism and increased extraversion are consistently associated with increased subjective quality

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

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

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 Esteem Self-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 selfesteem 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).

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 as stressful. Situations will be perceived as less stressful if the individual believes they are controllable. Those with a stronger sense of personal control, mastery, or selfefficacy 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

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 (problemfocused) 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

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 comparing oneself 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.

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,

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

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 presumably uncontrollable 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

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 adjustment compared 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,

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. Also they 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

(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, emotionfocused 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

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

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 tended to 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

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 with MS 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.

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.

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 stressbuffering effect of social support.

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

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 social interaction, 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).

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 more acutely 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.

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 50 to 100%SM, provided they are within the threshold for the optimal range of cognitive bias. The biases are maintained in this range by failure experiences and secondary control. The size of these positive biases may be different for people with MS than for people without chronic illness. This is based on the assumption that people with MS likely experience more failure experiences that serve to decrease the positivity of cognitive biases of self-esteem and primary control, and previous research that suggests the unpredictable nature of MS may result in increased biases of optimism. Secondary control is proposed to mediate between positive cognitive biases and subjective quality of life. Secondary control acts as a coping mechanism once a stressful encounter has taken place and maintains the positivity of cognitive biases. However, the adaptive outcome of primary control and secondary control varies according to the controllability of life situations. The availability of high levels of primary and secondary control strategies to an individual, and a preference for primary control unless the situation is uncontrollable, are related to optimally adaptive functioning. The use of primary and secondary control in this optimally adaptive way may be difficult for people with MS who face unpredictable changes in the adaptive outcome of primary and secondary control due to their fluctuating disease course. Perceived social support has been found to have a positive influence on subjective

quality of life. Perceived social support can be conceived as two types: problematic and positive. These differently influence subjective quality of life. It is likely that there is 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. Thus, the minimum threshold for perceived social support is likely to be raised in people with MS, such that they feel the absence of perceived social support more acutely than other people. This is likely to have a negative impact on their subjective quality of life. While much previous research has explained the various associations between psychological factors and subjective quality of life, less research has attempted to delineate the process whereby these factors influence subjective quality of life. This chapter has so far identified some of the factors that may be involved and suggested how MS may effect these. The next section of this chapter combines the identified psychological factors into a model proposed to explain the process whereby the factors interact to maintain subjective quality of life in an adaptive range across various life circumstances. A Model for the Maintenance of Subjective Quality of Life The literature review has identified some psychological factors involved in the maintenance of subjective quality of life. It has been proposed that Helsons (1964) Adaptation Level theory may partially explain this consistency in subjective quality of life evaluations. This theory proposes that subjective well-being is maintained through a process of habituation and contrast. The literature review revealed some other ways that psychological variables may be involved in this process. Cummins and Cahill (in press) proposed a model to explain the influence of personality and positive cognitive biases on subjective quality of life. This model is presented in Figure 5. 1

FIRST ORDER DETERMINANTS: Personality

SECOND ORDER DETERMINANTS: Internal Buffers

Extraversion Neuroticism

Positive Cognitive Biases Self-Esteem Optimism Primary Control

Subjective Quality of Life

Environmental Factors Figure 5.1 Cummin and Cahills (in press) homeostatic model for subjective quality of life. This model describes a system that combines a primary genetic capacity (personality) with a secondary buffering system (positive cognitive biases). Neuroticism and extraversion together provide an affective balance that produces the mid point of the set-range for subjective quality of life, which on average is 75% SM. Positive cognitive biases constitute a regulatory system that integrates affect, from personality, with cognitions regarding the external world (Cummins & Cahill, in press). Based on the research thus far discussed, this thesis adds two factors to this model: perceived social support and secondary control. While Cummins & Cahill (in press) acknowledge the role of these factors in maintaining positive cognitive biases and subsequently subjective quality of life, they have not explicitly included them in their model. This thesis asserts that these two factors play a vital, and predictable role, in the maintenance of subjective quality of life. Thus, this thesis proposes an expanded model for the maintenance of subjective quality based on Cummins and Cahills model and other previous research. This model is shown in Figure 5.2.

FIRST ORDER DETERMINANTS: Personality

SECOND ORDER DETERMINANTS: Internal Buffers

THIRD ORDER MEDIATING DETERMINANT

Perceived Social Support Extraversion Neuroticism Positive Cognitive Biases Self-Esteem Optimism Primary Control Secondary Control

Subjective Quality of Life

Environmental Factors

Figure 5.2 Proposed model for subjective quality of life In addition to Cummins and Cahills (in press) postulated links between personality, positive cognitive biases and subjective quality of life, this thesis proposes that secondary control mediates between positive cognitive biases and subjective quality of life. Once a situation is viewed as stressful or otherwise unfavourable it challenges positive cognitive biases. Secondary control acts to accommodate stressful experiences through the process of habituation and contrast proposed by Helson (1964), thus, maintaining subjective quality of life. Thus, a positive evaluation of the self and subjective quality of life is maintained. The adaptive functioning of primary and secondary control is integral to the model. The availability of high levels of primary and secondary control strategies to an individual and the use of primary control when the situation is controllable and secondary control when the situation is not controllable are related to optimally adaptive functioning (Folkman, 1984; Heeps, 2000; Thompson et al, 1998).

This thesis additionally proposes that perceived social support exerts a strong and predictable influence on subjective quality of life. This is based on research that has consistently demonstrated a positive association between social support and subjective quality of life (Holahan et al, 1996; Revenson et al, 1991; Schaefer et al., 1981). Furthermore, it is proposed, based also on previous research, that perceived social support is subject to a threshold effect. This threshold changes in response to stressful life circumstances, such that there is a heightened need for social support. When people are under stress, they may require more social support or feel the absence of social support more acutely (Cohen & Wills, 1985). These two additions to Cummins and Cahills (2001) model will be tested in this thesis in relation to people with MS, their partners and a group of comparison controls. The potential ways that variables of the proposed model may be compromised for people with MS have been discussed and are now summarised. Positive cognitive biases are likely to be different for people with MS compared to other people. Positive cognitive biases of self-esteem and primary control are likely to be smaller for people with MS than other people as these people are more likely to experience failures that maintain the upper boundary of positive cognitive biases. However, positive cognitive biases of optimism are likely to be larger for people with MS as MS provides the context of information uncertainty, and high motivation that combine to produce greater biases in optimism. Personality may be compromised in people with MS as they are likely to experience personality change due to cognitive impairment and emotional disturbance. Social support is also likely to be compromised in people with MS as they are restricted in social interactions by the physical symptoms of MS. Despite the potential differences between groups of people regarding the variables of the model, this thesis hypothesises that the model is valid for all people across different life circumstances, including people with MS. However, the variables of the model may differently contribute to subjective quality of life depending on life circumstances.

The generalisation of the model across different types of people in different life circumstances differs from previous research that has focussed on specific groups of people. For example, OBrien et al (1995), and Stuifbergen, Seraphine, and Roberts (2000) both proposed models to explain the process whereby psychological variables influence subjective quality of life for people affected by MS. While these models provide information that is relevant to people with MS, research based on these models is not comparable to people without illness. This limits the utility of the model. This thesis postulates that the processes involved in maintaining subjective quality of life are the same for all people. Therefore, models designed for use with all people are both valid and necessary to enable comparisons between different types of people.

CHAPTER 6
THE CURRENT THESIS This thesis is concerned with the psychological factors and processes that influence how people with MS and their partners evaluate their lives. Subjective quality of life is adopted to define and measure this construct. Subjective quality of life is defined as an evaluation of life satisfaction across a number of life domains. Measurement of discrete domains of quality of life has the potential to provide greater information about individual evaluations than the global approach to quality of life evaluations. A number of psychological variables were discussed in the previous chapters in regard to their influence on subjective quality of life. Previous research has hypothesised links between some of these variables and subjective quality of life. This thesis hypothesises some new links. These links are combined into a model proposed to explain the psychological maintenance of subjective quality of life for people across different life circumstances. The relationships between the variables are discussed in more detail in the introduction to the second study in the eighth chapter. It is likely that the variables of the model interact differently to maintain subjective quality of life for people with MS and their partners as the variables of the model are likely to be compromised in a number of ways for these people. This thesis will investigate how the psychological variables of the model interact and influence subjective quality of life, and whether this differs between people with MS, their partners, and people without chronic illness. These questions are explored through two linked studies. The second study investigates the variables of the model in people with MS, partners of people with MS, and controls through a self-administered questionnaire. This study is presented in chapter eight. While the utility of the subscales of the questionnaire has been established for other populations, they have not been used previously with a population with MS. A preliminary study was therefore required to ensure that these questionnaires were relevant to this population. Study One, presented in the

next chapter, seeks to gain information to ensure that the proposed questionnaires for the larger study are valid and useful. The general aims and hypotheses of the thesis are now discussed. Aims The general aim of the thesis is to provide a greater understanding of the psychological factors that influence the subjective quality of life of people with MS and their partners, and to compare this to those unaffected by MS or other major medical conditions. This will serve to enhance interventions aimed at improving the subjective quality of life of these people. The thesis also aims to promote further research into the quality of life of people with MS and their partners, through the provision of a level of understanding from which other research can build. General Hypotheses The general hypotheses for the thesis based on the proposed model for the maintenance of subjective quality of life are as follows: 1. The variables of the model predict the subjective quality of life

of people with MS, their partners, and control. Specifically, subjective quality of life is predicted by personality, positive cognitive biases, and perceived social support. Secondary control mediates between positive cognitive biases and subjective quality of life. 2. The variables of the model interact differently between the

three groups. 3. People with MS are subject to substantial stress from MS, thus

their subjective quality of life is lower than that of their partner, which is in turn lower than controls who experience no systematic stressor.

Additional, specific hypotheses regarding interactions between the variables of the model and differences between the three groups are discussed prior to the second study in the eighth chapter.