Thesis King k Introduction

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The Subjective Quality of Life of People

with MS and their Partners

Kylie King, B.Sc (Melbourne), P.Grad.Dip.Psych (Melbourne)

This thesis is submitted in partial fulfilment of the requirements for the

degree of Doctorate of Psychology (Health)

School of Psychology,

Faculty of Health and Behavioural Sciences,

Deakin University (Burwood)

Victoria, Australia

October 2001


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DEAKIN UNIVERSITY

CANDIDATE DECLARATION

I certify that the thesis entitled:

The Subjective Quality of Life of People with MS and their Partners

submitted for the degree of Doctor of Psychology (Health) is the result of my own

research, except where otherwise acknowledged, and that this thesis in whole or in part

has not been accepted for an award, including a higher degree, to any other university

or institution.

Full Name: KYLIE ELIZABETH KING

Signed

Date


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TABLE OF CONTENTS

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ABSTRACT

This thesis explored the validity of a model, based on previous research, to explain

the way in which psychological factors interact to maintain subjective quality of life

in the adaptive range of 50-100%SM (Scale Maximum) for individuals in normal

life circumstances. Subjective quality of life was proposed to be maintained by

psychological factors including personality, positive cognitive biases of self-esteem,

primary control and optimism and perceived social support. Furthermore, it was

proposed that secondary control mediates between positive cognitive biases and

subjective quality of life. The study explored the subjective quality of life, and

associated psychological factors, of people with Multiple Sclerosis (MS) a chronic

debilitating illness of the central nervous system, partners of people with MS, and a

comparison control group.

The first study utilised a technique called photovoice to explore the factors that

influence the subjective quality of life of people with MS and the ways they cope

with everyday difficulties. Nine people with MS were provided with disposal

cameras and were asked to take photographs of things that either positively or

negatively effected their quality of life. The photographs were then used tostimulate discussion in quantitative interviews. Participants reported varied

influences on their quality of life and ways of coping with everyday difficulties.

Items were added to the questionnaires of the second study based on this

information.

The second study involved 65 people with MS, 37 partners of people with MS, and

93 comparison controls who completed a self-report questionnaire designed to

measure the variables of the model cited above. People with MS reported a lower

subjective quality of life than both partners and controls. The model predicted a

substantial proportion of the variance in the subjective quality of life of the controls

(45%), people with MS (59%) and partners of people with MS (58%). The

findings are discussed in relation to previous research and to potential interventions

aimed at improving subjective quality of life.


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ACKNOWLEDGEMENTS

There are so many people to acknowledge for their contribution not only to this

thesis but also to my personal growth and happiness over the last three years.

I thank the MS Society of Victoria and their members for their commitment to this

project. I thank the people with MS and their partners who took part in this

research, and the others that didnt take part but provided me with support and

encouragement along the way. People who took time out to let me know that they

thought what I was doing was valuable and worthwhile.

I thank my supervisor Prof. Bob Cummins for his dedication to this thesis. His

assistance with conceptual and technical matters was invaluable. His enthusiasm

for research and confidence in my abilities when I needed them most will not be

forgotten. I thank also all the other staff at Deakin University who supported me

with their patience, wisdom, and encouragement. I especially Kate Moore who

looked after us Healthies all the way.

I thank my fellow students especially Maria, Tina, and Olivia for their complete

understanding, support and tolerance even though they were struggling with their

own difficulties. I am sure I have made friends that will last a lifetime.

I thank my other friends, family, and my partner Travis for never once letting me

believe that I could not make it. I thank them also for their financial support that

made this all possible, for cheering me up when I was stressed and sad, for

understanding when I couldnt return their unwavering support, and for reminding

me that there are some things more important than a thesis. I only hope that I can

one-day repay the support you all provided.

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LIST OF CONTENTS


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LIST OF TABLES


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LIST OF FIGURES


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LIST OF APPENDICES


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CHAPTER 1

INTRODUCTION TO THE THESIS

Multiple Sclerosis (MS) is a chronic, degenerative illness of the central nervous

system. The course of the illness is largely unpredictable, and its potential

symptoms are wide ranging (Ko Ko, 1999). People with MS often experience

downward fluctuations in physical and mental ability. There are few effective

treatments for MS, and there is little knowledge regarding its aetiology (MS

International Federation, 2001). The symptoms of the illness, its unpredictable

course, and the limited availability of treatments, often negatively effect

psychosocial functioning and well-being. It is therefore likely that people with MS

will benefit from research that focuses on enabling them to live full and satisfying

lives within the unique constraints of their condition. The following thesis has this

focus.

This thesis is premised on a model, based on previous research, that describes how

people evaluate the quality of their lives. A large body of research has attempted

to identify the factors that enable people to live full and satisfying lives. This thesisreviews this research and integrates common findings in the development of a

model. The resulting model is then tested using people with MS, their partners and

a control comparison group. An outline of the chapters of the thesis now follows.

Outline of the Thesis

In the next chapter, the thesis discusses the symptoms, prevalence, treatment,

psychosocial impact of MS, and the rationale for the focus on this illness. It

provides the context for the research within the unique characteristics of the illness,

which is potentially stressful and challenging to an individuals satisfaction with

life.

In the third chapter, the definition and measurement of subjective quality of life is

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discussed. This is necessary as the area is laden with definitions, which are often

used interchangeably, yet are theoretically distinct. This chapter provides a

conceptual framework for the thesis.

Chapter 4 describes the impact of life circumstances and subjective factors on

quality of life. The consistency of life quality evaluations across individuals is

discussed. This provides evidence for the limited influence of objective life

conditions.

Chapter 5 describes the psychological factors that are held to be associated with

subjective quality of life, namely: personality, positive cognitive biases, secondary

control, and social support. The interactions between these factors are examined.

Chapter 6 summarises the research reviewed in earlier chapters. A model is

proposed to explain the process by which identified psychological factors interact

to maintain subjective quality of life. This model is based on previous research.

Chapter 7 presents the first of two linked studies designed to test the model. Thisis a qualitative study, comprising interviews with people with MS. It seeks to

identify the factors contributing to evaluations of life quality. The findings of this

study were used to ensure that the material for the second study, a self-report

questionnaire, was both valid and sensitive to people with MS. The study resulted

in some modifications to the material, including the addition of new items and the

re-wording of other items.

Chapter 8 presents the second study. This study explores the proposed model

using a larger group of people with MS, partners of people with MS and a control

comparison group. Hypotheses based on the model are tested via a self-report

questionnaire. The study reveals differences between the three groups, and

support for the interactions between variables proposed by the model.

Chapter 9 reconciles the findings of the thesis with the research reviewed in the


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first five chapters. This chapter explores the implications of the findings for people

with MS, partners of people with MS, people unaffected by chronic illness, and

interventions aimed at these groups. Limitations of the current research and

avenues for future research are discussed, and conclusions regarding the thesis are

drawn


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CHAPTER 2

MULTIPLE SCLEROSIS

MS is one of the most common diseases of the central nervous system in adults and

affects over two and a half million people worldwide (MS Society Australia, 2000).

The symptoms of the disease are widespread and unpredictable, such that

individuals are often faced with changes in physical and mental ability.

Prevalence

MS affects three women for every two men (MS Society Australia, 2000). Onset

is most common in early adulthood, with a peak between the ages of twenty and

forty-five. Thus, the disease tends to occur at the same time that individuals are

beginning to establish families, occupational careers and financial security.

Consequently, MS can exert powerful influences on psychosocial functioning.

Disease Symptoms and Course

People with MS will usually experience a variety of neurological impairments

including muscle spasticity, with or without muscular weakness. They may also

experience impairments in cognition, vision, balance, bladder and sexual function

(Ko Ko, 1999). However, while MS is a degenerative disease, it does not appear

to appreciably shorten life span (Rao, Huber & Bernstein, 1992). MS may result in

crippling physical disability requiring full time care. However, essential bodily

functions remain intact.

It is not possible to predict the course of the disease at the time of diagnosis on the

basis of clinical presentation or immunological findings (Thompson, Colville,

Ketelaer & Paty, 1994). It is, however, possible to recognise broad categories of

the disease and to roughly classify people according to the differing temporal

course of their illness. Thus, 50 to 60% of people with MS fall into the category of

Relapsing-Remitting MS, characterised by recurrent attacks of neurological


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dysfunction followed by periods of complete or incomplete remission. 10 to 20%

of patients fall into either Primary Progressive MS , marked by relentless decline in

neurological function and disability, or Secondary Progressive MS where a

relapsing-remitting course has converted to a progressive course. In the third

category of Benign MS, there may be a long period between the recognised onset

of the disease and development of significant disability. 20 to 30% of people with

MS have a benign disease course (Rao, Huber & Burnstein., 1992).

Aetiology

The symptoms of MS are caused by scarring of the myelin sheath that insulates

nerve fibres of the central nervous system (MS Society Australia, 2000).

However, very little is known about the aetiology of this scarring. The aetiology

may involve either a genetic predisposition or an immune reaction to a virus (MS

Society Australia, 2000).

Treatment

Currently there is no cure for MS. Facets of the disease have recognised

treatments that are effective for some people. For example, steroids are

administered in acute exacerbations as they reduce the duration and allow a return

to normal function to occur more rapidly (MS International Federation, 2001).

There are also drugs that have some effect on the frequency and severity of

exacerbations; including Interferon Beta and Copolymer 1. These are administered

by subcutaneous self-injection on a daily basis (MS International Federation,

2001).

Psychosocial Impact

The stressors experienced by people with MS are likely to be wide ranging and

diverse due to the unpredictable nature of symptomatology and disease course, and

the limited treatment options. These stressors may comprise dealing with physical


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limitations, the psychological strain of maintaining a positive self-concept,

adjusting to role changes, and confronting ones own mortality (Larsen, 1990).

Partners of People with MS

Partners of people with MS are also likely to experience wide-ranging stressors

related to the illness. For example, they may become the sole income earner for

their family, they may experience sadness and disappointment related to their

partner's difficulties, and may grieve for the future they had planned that is no

longer attainable. Also, many are involved in their partners care (Pakenham,

1998; Schofield, Herrman, Block, Howe & Singh, 1997). Even when other people

are available to provide care, partners almost exclusively carry the burden of care

in the home (Carton, Loos, Pacolet, Versieck & Vlietinck, 2000). This may

require lifestyle adjustments and added pressures. Indeed, while being a partner or

a carer is stressful, people who are both partners and carers to people with MS are

likely to more distressed than people who fill only one of these roles (Aronson,

1997).

Part of the stress experienced by people with MS and their partners may be due toimpact of MS on social functioning. For example, symptoms of MS may restrict

lifestyles resulting in changes to social networks (Bartels DesRosier, Cantanzaro &

Piller, 1992). The social activities of both people with MS and their partners

outside the relationship may be constrained, especially if the person with MS is

dependent on their partner for care due to motor difficulties, cognitive impairment

or other MS symptoms. Partners may be less able to take part in satisfying

activities over a number of life domains due to physical limitations. For example,

partners may need to reduce or cease employment, or they may have to give up a

leisure pursuit due to the demands of caregiving.

Intimate Relationships

Some of the stress experienced by partners may also be explained by the effect of

MS on intimate relationships. MS may impact intimate relationships through its

effect on personality and sexual dysfunction. Personality change is common in MS


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(McIntosh-Michaelis, Roberts, Wilkinson, Diamond, McLelllan, Martin &

Spackman, 1991) and may result in altered interpersonal functioning. This may

cause distress for the partner who is faced with caring for someone who may be

markedly different from the person they once knew. Consistent with this, research

indicates that partners generally experience more distress as a result of the

psychological rather than physical incapacity of their partner with MS (Miller,

Berrios & Politynska, 1996).

Sexual dysfunction is also common (Dupont, 1996). Difficulties may include lack

of orgasm, impotence, disturbances of sensation, and lack of libido that are more

common in males (Burnfield & Burnfield, 1982; Dupont, 1996). These difficulties

have implications for partners' sexual functioning. In evidence of this, partners also

show high levels of sexual dysfunction, especially in the areas of avoidance and

infrequency of sex (Dupont, 1996). This is especially problematic as sexual

functioning is positively associated with the quality of intimate relationships

(McCabe, McDonald, Deeks, Vowels & Cobain, 1996). Thus, people with MS

and their partners are likely to experience relational difficulties.

Given the potential strains placed on the relationships of people with MS, it is not

surprising that relationship dissatisfaction is common. Between a quarter and a

third of people with MS and their partners report some dissatisfaction with their

relationship, and partners are more dissatisfied than people with MS (Dupont,

1996). This dissatisfaction has been linked to symptoms of MS, and marriage

breakdown is positively associated with increased physical disability (Hammond,

McLeod, Macaskill & English, 1996). However, other research indicates that the

strain of having a partner with MS is more related to the subjective experience of

caregiving than objective illness characteristics (OBrien, Wineman, & Nealon,

1995).

While MS negatively effects many relationships, not every intimate relationship is

unsuccessful or unhappy. Indeed, some people report improvement in their

relationships. McCabe et al (1996) found that about one third of people with MS


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reported closer relationships, and about one third indicated no change. Thus, it

may be that while MS can negatively change interpersonal relationships, it can also

result in improvements in other relationships, and can have a negligible impact on

others. Further research is needed to explore the impact of MS on the functioning

of intimate relationships, however this is beyond the scope of this thesis.

Summary

MS is a relatively common disease of the central nervous system with wide-ranging

and unpredictable symptoms and disease course. The disease potentially provides

a complex set of stressors for both the person with MS and their partner. These

can potentially result in relationship dissatisfaction, and reduced subjective quality

of life. The following chapters explore the influence of both objective life

conditions such as illness, and subjective factors such as personality and coping, on

quality of life. It will be demonstrated that the way in which people interpret and

cope with life events influences how people feel about their lives more than

objective life conditions, such as illness. Thus, research based on subjective factors

is likely to be beneficial to people with MS and their partners who are forced tomaintain their quality of life in the face of potentially stressful life circumstances.


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CHAPTER 3

SUBJECTIVE WELL-BEING, LIFE SATISFACTION AND SUBJECTIVEQUALITY OF LIFE

How people feel about themselves and their lives has been the focus of much

research. It is an area laden with definitions. Subjective well-being, life

satisfaction, and subjective quality of life are some of the many terms used by

researchers to describe how people feel about themselves and their lives.

Colloquially, these terms are often used interchangeably. Theoretically they have

distinct meanings yet opinions continue to differ on the use of this terminology.

For the purpose of this thesis the following taxonomy will be adopted.

Subjective Well-Being

Subjective well-being is the most global term used to describe how people feel

about their lives. It includes peoples emotional responses, satisfaction with life

domains, and global judgement of life quality (Diener, Suh, Lucas & Smith, 1999).Thus, subjective well-being comprises measures of cognition (satisfaction) and

affect (positive affect) (Cummins, 2000). The cognitive component of subjective

well-being can be described in two ways: life satisfaction and subjective quality of

life.

Life Satisfaction

Life satisfaction refers to a single judgement concerning satisfaction with ones life

based on the difference between ones circumstances and an internally imposed

standard (Cummins & Nistico, in press). This is measured by asking respondents a

single question: how do you feel about your life as a whole? (Andrews &

Whitey, 1976). This provides a global measure of how people feel about their

lives.


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Subjective Quality of Life

Subjective quality of life is defined as an evaluation of life satisfaction across a

number of life domains. This differs from objective quality of life, which is an

evaluation of a life in relation to externally imposed objective standards such as

where people live, their income or occupation. Evaluations of subjective quality of

life are therefore determined by an interaction of personal values, life conditions,

and life satisfaction (Felce & Perry, 1995). Such an approach considers subjective

quality of life to be composed of discrete life domains.

There is no agreement as to the number of domains that comprise subjective

quality of life. Cummins (1999) defines quality of life as the aggregate of the seven

domains of material well-being, health, productivity, intimacy, safety, community

and emotional well-being. However, additional life domains, such as spiritual well-

being, leisure and usefulness may also be important to people living under

particular circumstances. A life domain of independence may be especially

relevant to people with disabilities. A recent study of the aspirations of over four

hundred and forty-four people with disabilities in Victoria found that independencewas a major aspiration of people with disabilities (Johnson, 2000). The author of

the study defined independence as the ability to pursue their goals and aspirations

(p31) and concluded that for people with disabilities, if quality of life were to be

boiled down to one word, it would be independence (p. 16). However, such

research does not elucidate the importance of independence to people with

disability relative to people without disability, nor does it establish whether this

domain of life is independent of the other life domains.

The measurement of discrete domains of quality of life has the potential to provide

much more information about individual evaluations than the global approach. For

example, the relative importance of each domain varies between individuals, and

some domains have a consistently stronger influence on subjective quality of life

than other domains (e.g. Mellor, Cummins & Loquet, 1999). Thus, some domains

account for a larger proportion of subjective quality of life than others. The


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domain of 'intimacy', regarding relationships with family and friends, is such a

domain. This domain is consistently judged both the most important and the one

from which most satisfaction is derived (Mellor, Cummins & Loquet, 1999).

Information regarding different life domains is most useful for improving

individuals subjective quality of life. Cummins (1999) proposes that deficits in

subjective quality of life incurred by disability or disease may be offset by the

positive experiences within other life domains. For example, improvements in the

domain of intimate relationships can counter dissatisfaction with other life domains

(Mellor, Cummins & Loquet, in press). This has implications for people with MS

and their partners who often report dissatisfaction with intimate relationships and

suggests that interventions aimed at improving these relationships will likely be

more beneficial to subjective quality of life than interventions aimed at other

domains.

Summary

Three terms used to describe how people feel about their lives were discussed:subjective well-being, life satisfaction and subjective quality of life. Each term

describes a different aspect and measurement of the construct. This thesis is

concerned with subjective quality of life as it potentially provides the most

information regarding different facets of satisfaction with life and subsequently

avenues for improving how people feel about their lives. The next two chapters

explore both the objective and subjective influences on subjective quality of life.


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CHAPTER 4

THE INFLUENCE OF OBJECTIVE LIFE CONDITIONS ON

SUBJECTIVE QUALITY OF LIFE

Life circumstances, or objective life conditions, have a limited influence on

subjective quality of life. Objective factors account for only approximately 15% of

the variance in subjective well-being (Argyle, in press). This is evidenced by the

consistency of life satisfaction evaluations between people with very different

objective life conditions. For example, Cummins (1997b) found that college

students, adolescents attending high school and people with intellectual disabilities

reported no differences in life satisfaction despite substantial differences in their

objective life quality. Life satisfaction evaluations are so consistent that a gold

standard has been developed. Cummins (1995) compared sixteen western general

population studies on life satisfaction. Among these studies, fourteen different

measures of life satisfaction were employed. To enable comparison of the studies,

each studys life satisfaction scores were converted to a percentage of the

maximum score obtainable on the scale (SM). There was remarkably little

variation in mean sample life satisfaction scores between the studies despite littlecommonality in their methodologies. Following from this, it was proposed that the

life satisfaction gold standard be considered as 75.0 +/-2.5%SM. A later review by

the same author of two hundred and six articles concerning the topic of life

satisfaction confirmed a world range in life satisfaction of 60 to 80%SM and

approximated that the adaptive range was between 50 and 100%SM (Cummins,

1998b).

The consistency of life evaluations across different life circumstances suggests a

psychological mechanism that attempts to maintain subjective well-being within a

set range. The presence of a such a set point for subjective well-being was first

proposed by Headey and Wearing (1989) and is evidenced by the limited long-term

influence of negative events on subjective quality of life. For most people, negative

events tend to depress subjective quality of life only in the short term, such that

people tend to recover to their set point some time later (Cummins, in press).


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Adaptation level theory (Helson, 1964) partially explains the consistency of

subjective quality of life evaluations across markedly different life circumstances.

This theory proposes that subjective well-being is maintained through processes of

habituation and contrast. People compare current levels of stimulation to the level

of stimulation to which they have been previously accustomed. This results in a

shift of adaptation level. Extreme good fortune results in an upward shift of

adaptation level. Consequently, many of the ordinary life pleasures seem more

neutral. Highly negative events, on the other hand, cause a downward shift in

adaptation level such that previously neutral events now seem pleasurable

(Brickman, Coates & Janoff-Bulman, 1978). However, this mechanism can be

defeated by chronic life conditions that impose a burden that is too strong to allow

for adaptation (Cummins, 2000). As discussed previously, MS can induce a wide

range of stressors. Thus, MS potentially imposes a burden that is too strong to

allow for adaptation and can result in decreased subjective quality of life.

The Influence of Multiple Sclerosis on Subjective Quality of Life

MS is a life condition that can potentially negatively effect subjective quality of life.

People with MS commonly report a lower life satisfaction than both people

without illness (Canadian Burden of Illness Study Group, 1998; Gulick, 1997;

Nortvedt, Riise, Myhr & Nyland, 1999). They also report a lower satisfaction with

life than people with other chronic illnesses such as inflammatory bowel disease

and rheumatoid arthritis (Rudick et al, 1992), and epilepsy and diabetes (Hermann

et al, 1996). It has been suggested that some factors of MS uniquely contribute to

lowered quality of life. These include the unpredictability of attacks, fear of

progression and neuro-behavioural symptoms (Ko Ko, 1999).

There is some debate regarding the influence of the physical symptoms of MS on

subjective quality of life. While, those living a longer time with MS are likely to

have increased levels of disability (Barnwell & Kavanagh, 1997), adjustment to MS

is not necessarily related to a longer disease duration (Barnwell & Kavanagh,


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1997), nor disability severity (Aronson, 1997; Barnwell & Kavanagh, 1997;

Burnfield & Burnfield, 1982). However, quality of life may be influenced by the

course of the illness. For example, decreased quality of life is associated with a

more progressive disease course (Pfennings et al, 1999). The previously discussed

habituation and contrast process that act to maintain subjective well-being may

explain these seemingly inconsistent findings. While, individuals may be able to

adjust to disability from other disease courses through habituation and contrast,

this process may be defeated by a progressive disease course that is characterised

by an unpredictable and unrelenting deterioration in physical ability. Individuals

may be unable to restore normal levels of subjective well-being before further

deterioration is experienced.

It is likely that partners of people with MS also have lowered subjective quality of

life due to the complex nature of the stressors they can experience. Consistent

with this, carers of people with MS experience compromised life satisfaction and

psychological distress which is lower, but positively correlated with their care

receivers psychological distress (Pakenham, Stewart & Rogers, 1997). Caregivers

of people with other illness also experience decreased subjective quality of life.This has been found to be three standard deviations below the base score of the

normative range (Cummins, 2001). It was concluded from this review of research

on the quality of life of carers that caregivers of severely disabled people are at

extreme risk of being highly stressed, clinically depressed and with a subjective

quality of life that is way below normal (Cummins, 2001, p 24). However, as

discussed earlier, partners may be even more likely than carers to be negatively

affected by MS. This may be due to the physical symptoms of MS, the way in

these symptoms constrain ones lifestyle, and the psychological toll of caregiving

and living with the illness.

Assessing Quality of Life in MS

Few studies have explored the process whereby MS exerts its influence on

subjective quality of life. Instead, previous research on subjective quality of life has

generally utilised subjective quality of life assessments as outcome measures, to


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assess treatment effectiveness (Vickery, Hays, Harooni, Myers & Ellison, et al,

1995). Illness specific measures, such as the Multiple Sclerosis Quality of Life

Instrument (Vickery et al, 1995) and the Multiple Sclerosis Quality of Life

Inventory (Fisher et al, 1999), have been developed with this aim in mind. These

are self-report instruments that ask a series of questions to assess the impact of MS

on physical health, emotional well-being, social functioning, cognitive functioning,

sexual functioning, health distress, and overall quality of life.

More general health related quality of life measures have also been developed.

These measures comprise physical, mental and social health measures. Health

related quality of life measures that are regularly used with people with MS include

the Medical Outcome Short Study Form-36 (Ware, Snow, Kosinski & Gandek,

1993), the Disability and Impact Profile (Laman & Lankhorst, 1994).

These two kind of measures assess health status and the impact of illness on

lifestyles and emotional well-being. These instruments specific to people with

illness are not useful when comparing people with MS to other groups of people.

Also, the Disability Impact Profile and the Multiple Sclerosis Quality of LifeInventory combine objective and subjective evaluations of factors thought to

influence quality of life, including measures of MS based on physical symptoms.

This is problematic because, as previously discussed, objective circumstances and

subjective experiences differentially effect quality of life. The current research

utilises a self-report measure of the impact of MS such that only subjective factors

are included in the thesis. The effects of objective and subjective factors are

therefore differentiated. Also, the thesis utilises a generic measure, rather than an

illness specific measure, of subjective quality of life so that different groups of

people with and without illness can be compared.

Summary

Objective life conditions normally have only a limited influence on subjective

quality of life. Evaluations of subjective quality of life are remarkably consistent


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across varying life circumstances. The existence of a mechanism that keeps

subjective quality of life at a set point has been proposed. This mechanism may

involve processes of habituation and contrast. However, this mechanism can be

defeated by chronic life conditions that impose a burden that is too strong to allow

for adaptation. MS potentially imposes such a large burden both for people with

MS and their partners. Research is needed that clearly differentiates between

objective and subjective influences, and delineates the psychological factors and

processes that influence the subjective quality of life of people with MS. Such

research will assist interventions aimed at improving the quality of life of people

with MS by highlighting potential targets for effective intervention.

The following chapter explores the various psychological factors that have been

associated with subjective quality of life. These are then combined into a model

that describes the mechanism by which subjective quality of life is maintained in the

adaptive range of 50 to 100%SM proposed by Cummins (1995).


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CHAPTER 5

THE INFLUENCE OF PSYCHOLOGICAL FACTORS ON SUBJECTIVE

QUALITY OF LIFE

Various psychological factors have been associated with subjective quality of life.

This chapter reviews the current state of research regarding the influence of these

factors. The variables most consistently related to subjective quality of life are

personality, positive cognitive biases in self-esteem, primary control and optimism,

secondary control and perceived social support. These will now be described in

more detail in relation to previous research and Multiple Sclerosis. A model is then

proposed to explain the process whereby these factors interact to maintain

subjective quality of life.

Personality

Personality can be defined as a complex system of internal constructs (Smith &

Vetter, 1998) that have a strong genetic link. Tellegen et al. (1998) found, in their

study of monozygotic and dizygotic twins reared apart and together, that onaverage about 50% of measured personality diversity could be attributed to genetic

diversity. They concluded that environmental influences generally play a very

modest role in the determination of many personality traits.

The personality traits of extraversion and neuroticism have received the most

attention in relation to subjective well-being. While, extraversion traits contribute

to positive enjoyment without reducing the unpleasantness of adverse

circumstances, neuroticism traits predispose one to suffer more acutely from

misfortunes, without diminishing positive experiences (Costa & McCrae, 1980).

These stable traits predispose people to experience moderately stable levels of

favourable and adverse life events and moderately stable levels of subjective well-

being (Headey & Wearing, 1989). Specifically, decreased neuroticism and

increased extraversion are consistently associated with increased subjective quality


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of life for both people with illness (Gurizerath, Connelly, Albert, & Knebel, 2001;

Hyland, Bot, Singh, & Kenyan, 1994; Yamaoka, et al,1998) and people without

illness (Francis & Bolger, 1997; McCrae & Costa, 1991; Pastuovic, Kolesaric, &

Krizmanic, 1995).

Extraversion and neuroticism have been strongly linked to trait positive and trait

negative affect (Fogarty et al, 1999), which also predict subjective well-being.

Indeed, Watson and Clark (1984) argue that measures of negative affect,

neuroticism and other apparently diverse personality scales are in fact measures of

the same stable and pervasive trait. Trait positive and negative affect can be

thought of as pervasive affective states that influence responses to situations (Clark

& Watson, 1991). Trait affect reflects differences in negative mood and self

concept (Watson & Pennebaker, 1989). Individuals high in negative affect are

more likely to experience distress and dissatisfaction at all times and across

situations, even in the absence of overt stress (Watson & Clark, 1984). Trait

positive affect reflects differences in energy levels, excitement and enthusiasm

(Watson & Pennebaker, 1989). Positive affect may buffer the individual from

harmful effects of stress by influencing coping strategies, so that individuals high in positive affect are less affected by stressors (Fogarty et al, 1999).

Personality and Multiple Sclerosis

The association between subjective well-being and personality may be confounded

for people with MS by emotional disturbance and cognitive impairment.

Emotional disorders are more common in MS than in conditions that produce

roughly equivalent degrees of physical disability, such as rheumatoid arthritis,

spinal cord injury and muscular dystrophy (Rao, Huber & Burnstein, 1992).

Common emotional disturbances include euphoria and depression. These

emotional changes seem to have a specific temporal distribution. The earlier stages

of the disease are associated with depression that is likely to reflect the emotional

toll of living with MS (Gilchrist & Creed, 1994). The later stages of the disease

however are associated with euphoria which likely results from increasing cognitive


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disturbance in association with widespread cerebral involvement (Rao, Huber &

Burnstein, 1992).

Many people with MS also experience cognitive impairment. McIntosh-Michaelis

et al (1991) found cognitive impairment in 46% of one hundred and forty-seven

people with MS, memory impairment in 34% and failure on tests of frontal lobe

function in 33%. Cognitive impairment may occur very early in the course of the

disease (Rao, Huber & Burnstein 1992). It is likely that these changes affect the

subjective quality of life of people with MS, and those close to them, in a number

of ways. Changes in personality characteristics may change the way in which

individuals perceive and cope with stressors, and may cause frustration and

depression. This may result in new conflicts in interpersonal relationships.

These changes in emotional and cognitive functioning may then alter the

relationship between personality and subjective quality of life for people with MS

in comparison with other people. Euphoria and cognitive impairment may also be

associated with a loss of personal insight and judgement that may confound reports

of subjective well-being and quality of life for the person with MS.

Summary

The personality traits of extraversion and neuroticism have been consistently

associated with subjective quality of life. These are closely linked to positive and

negative affect. It is likely that personality influences subjective quality of life in

two ways. Personality can influence the perception of stressors and can effect

coping efforts. The influence of personality on subjective quality of life is likely to

be compromised for people with MS who experience emotional disturbance and

cognitive impairment that may result in personality changes.

Positive Cognitive Biases

Positive cognitive biases have been associated with subjective quality of life.

Specifically, research suggests that self-esteem, control, and optimism contribute to


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the maintenance of satisfaction with life. Taylor and Brown (1988) claim that most

individuals possess a very positive view of the self and that these positive views are

associated with a variety of positive effects such as positive mood, social bonding,

higher motivation, greater persistence, and ultimately greater success. It has been

proposed that satisfaction of the need for self-esteem, primary control and

optimism is dependent upon the presence of positive cognitions regarding these

aspects of the self (Cummins & Nistico, in press).

The basis of these self-enhancing positive cognitive biases probably lies in the use

of social comparison. Individuals tend to overestimate their own good qualities

relative to their assessment of others qualities (Brown, 1986). Cummins and

Nistico (2001) claim that encountering failure may maintain the optimal upper

boundary of positive cognitive bias. However, excessive failure may serve to

lower subjective quality of life. This thesis proposes that a coping mechanism

mediates between positive cognitive biases and subjective quality of life. The three

positive cognitive biases are now addressed in turn.

Self EsteemSelf-esteem is defined as liking and respect for oneself (Rosenberg, 1979 p45).

Whilst all people display a pervasive tendency to cast themselves in more positive

and less negative terms than they portray other people, persons with high self-

esteem are most likely to offer a more flattering portrayal of their self (Brown,

1986). Taylor and Brown (1998, 1994) claim that such self-aggrandizing views

are linked to psychological well-being. Cummins and Nistico (in press) reviewed

six studies concerning self-esteem and life satisfaction and found that self-esteem

was strongly correlated with life satisfaction. This may be due to a direct effect on

well-being, or indirectly through coping efforts. In evidence of this, self-esteem

has been linked with primary control strategies in people with MS (OBrien, 1993)

and with the use of effective coping strategies in people without illness (Schutz,

1998).


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Control

Control has been consistently associated with subjective quality of life in two ways:

as a generalised belief in personal competence, or as a positive cognitive bias, and

as a coping mechanism once a stressful encounter has taken place. A definition of

stress is integral to these functions of control. Stress is defined here as a

relationship between the person and the environment that is appraised by the

person as taxing or exceeding his or her resources and as endangering his or her

well-being (Folkman, 1984, p. 840). These two functions of control are now

discussed in more detail

Control as a generalised belief in personal competence can be thought of as a belief

concerning the extent to which he or she can control outcomes of importance. In a

specific stressful encounter, control can also be thought of as a situational appraisal

of the possibilities for control. Existing as a belief, control does not need to be

exercised for it to be effective and control does not need to be real, just perceived,

for it to influence the aversiveness of a stressful encounter (Thompson, 1981).

Thus, generalised beliefs of control affect whether situations are perceived asstressful. Situations will be perceived as less stressful if the individual believes they

are controllable. Those with a stronger sense of personal control, mastery, or self-

efficacy cope better with chronic illness. They are more likely to make desired

behaviour changes and have better psychological well-being (Thompson et al,

1998).

Control as a coping mechanism can be viewed as a cognitive mediator of a stressful

transaction and its adaptational outcome (Folkman, 1984). Thus, once a situation

is assessed as a stressor, coping efforts mediate the effect of this stressor on

subjective quality of life. Coping can be defined as constantly changing cognitive

and behavioural efforts to manage specific external and/or internal demands that

are appraised as taxing or exceeding the resources of the person (Lazarus &

Folkman, 1984, p. 141). Previous research has identified many different ways that

individuals cope with stressful situations. Various typologies have been proposed


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to describe the functioning of control. These include: primary and secondary

control, problem and emotion focused coping, and behavioural, cognitive,

informational and retrospective control. These are now described.

Primary and Secondary Control

The primary and secondary typology of control mirrors the two functions of

control. Primary control can be generally defined as a belief that one can influence

existing realities (Wiesz et al., 1984) and is akin to the aforementioned positive

cognitive bias of control. An example of this is the belief that one will loose weight

by exercising. Secondary control, on the other hand, can be defined as accepting

or adjusting to ones situation, such as when one is having trouble loosing weight.

Secondary control involves cognitive strategies such as goal disengagement and

social comparison. For example, telling oneself that loosing weight is not

important, or by comparing oneself to heavier individuals.

Other researchers (Heckhausen & Schulz, 1995) have defined primary and

secondary control based principally on their targets. They define Primary control

as focussing on the external world, and secondary control as focussing on the self.These two definitions of primary and secondary control are similar. However, this

thesis adopts the first definition of primary and secondary control proposed by

Wiesz et al. (1984). This definition focuses on the function rather than the target

of control. Other typologies of control have been attempted along similar

conceptual lines.

Problem and Emotion Focussed Coping

Folkman and Lazarus (1980) define control as a coping mechanism with two major

functions: management of the problem that is causing the distress (problem-

focused) and regulation of emotion or distress (emotion-focused). Whilst this

typology is similar to that of primary and secondary control, similarly to Wiesz et

al.s (1984) primary and secondary control definition, it is focused on the target

rather than the function of control and arguably neglects generalised beliefs in


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personal competence. This function, as previously outlined, can also act to

mediate potentially stressful transactions.

Behavioural, Cognitive, Informational, and Retrospective Control

Thompson (1981) proposed another typology of control. This is a fourfold

typology of control consisting of: behavioural control, cognitive control,

information, and retrospective control. Behavioural control is defined as a belief

that one has a behavioural response available to affect the aversiveness of an event.

Cognitive control is defined as the belief that one has a cognitive strategy available

that can affect the aversiveness of an event. Informational control refers to a

communication delivered to a person who is the potential recipient of an aversive

event. Retrospective control refers to beliefs about the causes of the event. This

typology is very similar to the primary and secondary typology, with the addition

of information and retrospective control. These additions are arguably

superfluous. Informational control can be viewed as a factor external to the

individuals coping, and as a component of the stressor, which may or may not

translate into beliefs in personal control and coping efforts. Retrospective control

is better conceptualised as a type of primary control. For example, by comparingoneself to heavier individuals after failing to loose weight, one can re-interpret

failure as success in order to gain retrospective control. Thus, retrospective

control can be viewed as beliefs in personal control (primary control) after coping

efforts (secondary control) have been utilised.

In summary, the typology of primary and secondary control is adopted to

conceptualise the function of control. This conceptualisation is the only one of the

three discussed that incorporates the two functions of control. These are a coping

mechanism once a stressful encounter has taken place, and a generalised belief in

personal competence. The primary and secondary control typology is also the only

one to focus exclusively on the action of control rather than the target.

Considerable research has explored the relative influence of primary and secondary

control on subjective quality of life.


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The Adaptive Outcomes of Primary and Secondary Control

The potential for primary and secondary control and the relative influence of each

on subjective quality of life depends on the particular person and the specific type

of encounter. As such, there may be no universally good or bad coping process,

however there may be some that are more often better or worse than others

(Lazarus, 1993). The influence of primary and secondary control on subjective

quality of life in different life circumstances is now discussed. For the purposes of

this discussion, the term adaptive is used to describe a function that has a positive

influence on subjective quality of life.

The Uncontrollability Model (Koller & Kaplan, 1978) claims that perceptions of

uncontrollability and decreased motivation for control can fuel one another in a

downward spiral, such that in some situations people abandon the quest for

control. However, this is unusual. Control is so valued that the quest for it is

rarely abandoned. Individuals are instead likely to shift from one method of

control to another (Rothbaum, Weisz & Snyderl, 1982) and strive to establish a

balance between primary control and secondary control (Lazarus, 1981; Weisz,Rothbaum & Blackburn, 1984). However, sudden and substantial losses in

primary control are likely to be particularly challenging in that they do not allow

individuals time to adapt and compensate through secondary control before

significant loss occurs. Over time, crises such as these can be overcome as control

is re-established and elaborated (Heckhausen & Schulz, 1995).

The influence of primary and secondary control on subjective quality of life is

effected by the potential for utilisation. Throughout the course of life, potential for

primary control and secondary control undergoes major changes. The potential for

primary control may be constrained by health factors, social institutions, and

mental capacity (Heckhausen & Schulz, 1995). Also, an individuals background

and past experience may determine the relative emphasis placed on each type of

control (Rothbaum et al., 1982). For example, Western societies view primary

control as preferable to the use of secondary control strategies. However,


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collectivist cultures, such as Asian cultures, stress close alignment with others and

discourages attempts to make realities fit ones own wishes (Weisz et al., 1984).

Thus, the influence of primary and secondary control on subjective quality of life is

not absolute, and depends on other factors such as the desirability or availability of

control.

Two major models have been proposed to explain the adaptive outcomes of

primary and secondary control, and the process of re-establishing control in

response to a crisis. These are the Discrimination Model (Folkman, 1984;

Thompson et al, 1998) and the Primacy/Back-up Model (Heckhausen & Schulz,

1995). Recent research also suggests a third possibility related to the balance

between primary and secondary control.

The Discrimination Model (Folkman, 1984; Thompson et al, 1998) proposes that

perceptions of primary control are adaptive when the situation is controllable, and

acceptance (or secondary control) is more adaptive when the situation is not.

Thus, secondary control acts to compensate for losses in primary control to protect

emotional well-being. In contrast, the Primacy/Back-Up Model (Heckhausen &Schulz. 1995) claims that primary control is the more adaptive strategy regardless

of the controllability of the situation. The function of secondary control in this

model is to compensate for low primary control and help bolster feelings of overall

control in all types of situations. It is unclear whether the Primacy/Back-Up Model

or Discrimination Model best describes the adaptive outcome of primary and

secondary control.

According to the Primacy/Back-Up Model, Thompson et al (1998) claimed that

primary control is associated with good psychological outcomes even in very low

control circumstances. Consistent with this, reductions in primary control and

increased use of secondary control have been found to have negative

consequences. Ntterland and Ahlstrm (1999) found, in a study of individuals

with Muscular Dystrophy and Post-polio Syndrome, that problem-focused

(primary control) strategies were not used frequently and that this was commonly


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associated with feelings of helplessness and hopelessness. Aikens, Fischer, Namey

et al (1997) also found that a high rate of escape avoidance coping, a type of

secondary control, was possibly predictive of future distress in people with MS

with mild physical disability.

However, in contrast with the Primacy/Back-Up Model, perceptions of primary

control may be maladaptive in situations where primary control is impossible or

very unlikely. Also, recent research found that secondary controls role in positive

adjustment comprises more than just acting to compensate for low primary control

(Heeps, 2000). A number of studies support this assertion. For example, Affleck,

Tennen, Pfeiffer and Fifeld (1987) found an association between disease severity

and the adaptiveness of perceptions of control in Rheumatoid Arthritis patients.

Perceiving control over symptoms was unrelated to mood in patients with mild

symptoms, but was significantly associated with positive mood in patients with

moderate to severe symptoms. In contrast, perceiving primary control over the

course of the disease was marginally associated with positive mood in patients with

mild disease, but significantly associated with negative mood in patients with

severe disease. Thus, as the disease worsened, perceiving control over presumablyuncontrollable factors (disease course) was emotionally maladaptive. Burish et al

(1984) similarly found that an external locus of control, reflecting relinquished

perceptions of primary control, was adaptive for a sample of cancer patients. Eitel,

Hatchett, Friend, Griffin and Wadhwa (1995) also found a negative relationship

between control over treatment options, and emotional well-being with increases in

end-stage renal disease severity. Chipperfield, Perry, and Menec (1999) found that

secondary control strategies became increasingly adaptive with age and declining

health, and presumably decreased opportunities for primary control. These

findings highlight that, in some situations, individuals prefer control in hands of

people able to minimize future danger, such as health professionals. An external

orientation, reflecting acceptance of a loss of primary control, may reduce distress

associated with a lack of control and increase the likelihood that patients will

follow the advice of medical staff regarding treatment. Eitel et al. (1995) proposed

that only when an illness becomes severe or poses a serious threat to the individual


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do perceptions of control over treatment negatively effect psychological

adjustment.

These findings are consistent with Folkmans (1984) assertion that when

individuals prefer not to have control, increased choice or participation may

heighten stress (Folkman, 1984). They are also consistent with the Discrimination

Model that claims that primary control beliefs may become a disadvantage when

they have a low probability of success. Thus, it may be that high beliefs in primary

control are adaptive as long as they remain untested (Thompson et al, 1988).

So far, these models have described the adaptive value of absolute levels of

primary and secondary control. However, recent research suggests that the

availability of strategies, as well as the use of strategies, is related to adaptive

functioning. Optimally adaptive functioning is reported by people unaffected by

chronic illness who have a repertoire of control strategies involving relatively high

levels of both primary and secondary control (Heeps, 2000). People with a control

imbalance, that is average or above average levels of one control process but below

average of the other, report lower levels of positive psychological adjustmentcompared to people with average or above average levels of both (Heeps, 2000).

Taken together with the research supporting the Discrimination Model, this recent

research suggests that the availability of high levels of primary and secondary

control strategies to an individual and the use of these strategies in accordance with

the Discrimination Model are related to optimally adaptive functioning.

The research discussed so far has focused on the adaptive functioning of individual

use of primary and secondary control. However, couples tend to react to disease

as a unit, such that their use of coping strategies (emotion or problem focused) is

matched and their well-being is highly correlated (Pakenham, Dadds, & Terry,

1995). Individual coping efforts may effect both their partners coping efforts and

their subjective quality of life. The limited research on this topic suggests that the

similarity of coping between partners and the couples average levels of coping are

positively associated with well-being (Pakenham, 1998; Revenson, 1994). Thus,


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the relationship between partners use of primary and secondary control may also

be related to well-being.

Summary

Control has been associated with subjective quality of life in two ways: as a

positive cognitive bias of personal competence and as a coping mechanism once a

stressful encounter has taken place. The terms primary and secondary control

are used to describe these two processes. Research suggests that for individuals,

the availability of high levels of primary and secondary control strategies and a

preference for primary control unless the situation is uncontrollable are related to

optimally adaptive functioning. For people with partners, similarity in the use of

primary and secondary control with their partner and a high level of couple primary

and secondary control use may also be related to optimally adaptive functioning.

Optimism

Positive cognitive biases of optimism refer to a set of positive beliefs regarding

oneself in the future. Robinson and Ryff (1999) claim that perceptions of future

well-being, or optimism, are particularly subject to self-enhancement biases. Alsothey claim that self-deception is greatest under conditions of information

uncertainty and high motivation. Thus, relatively concrete information about the

future will serve to minimize such enhancement. An absence of relatively concrete

information about the future provides an ideal opportunity for envisioning the best

possibilities for ones self. The way individuals view their future and present may

also be motivated by their possible selves. These selves are the ideal selves that

we would much like to become. They are also the selves we could become and the

selves we are afraid of becoming (Markus & Nurius, 1986, p. 954). Possible

selves are important because they function as incentives for future behaviour and

provide an evaluative and interpretative context for the current view of self.

Research has documented diverse benefits of optimism. Optimism has been

negatively related to depression in MS (Fournier, de Ridder, & Bensing, 1999). It

has been related to adjustment and well-being in people with coronary heart disease


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(Scheier et al., 1989), and other people unaffected by chronic illness (Aspinwall

&Taylor, 1992). It has been proposed that optimism exerts its influence directly on

well-being (Aspinwall & Taylor, 1992) and through coping efforts. In relation to

this, optimism has most commonly been associated with a higher use of primary

control strategies (Aspinwall & Taylor, 1992; Friedman et al., 1992; Scheier et al,

1989; Strutton & Lumpkin, 1992). However, for people with MS, emotion-

focused coping has been found to mediate the impact of optimism on depression

(Fournier, de Ridder, & Bensing, 1999). Although these findings appear to

conflict, they are consistent with the Discrimination model of control (Folkman,

1984; Thompson et al, 1998), which claims that perceptions of primary control are

adaptive when the situation is controllable and that secondary control is more

adaptive when the situation is not controllable. Thus, optimists adopt adaptive

coping strategies dependent on the controllability of the situation. Consistent with

this, Scheier, Weintraub, and Carver (1986) found that optimists tend to adopt

strategies that are more effective when coping with stress.

The Adaptive Outcomes of Positive Cognitive Biases

While research discussed above has demonstrated the benefits of positive cognitive biases, Colvin and Block (1994) argue that there is insufficient evidence that

unrealistic optimism is positively related to mental health. They claim that

cognitive distortions about oneself and ones social surroundings can not result in

adaptive behaviour over long periods of time in a world that provides feedback or

reacts on the individual.

Baumeister (1989) suggested a compromise between these seemingly

incommensurable views in his Optimal Margin Hypothesis. He proposed that

optimal psychological functioning is associated with a slight to moderate degree of

distortion in ones perception of the self and the world, such that there is an

optimal range for positively biased cognitions. Provided that cognitive biases are

maintained within some homeostatic range which prohibits the emergence of

delusions (defined as being beyond the normal adaptive range and severely

incongruent with reality), they constitute an adaptive mechanism for the


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maintenance of subjective quality of life. It is possible therefore, that such

positively biased cognitions constitute an adaptive mechanism that creates and

maintains mean population life satisfaction in the range of 50-100%SM.

In summary, positive cognitive biases in self-esteem, primary control and optimism

have been proposed to constitute an adaptive mechanism for the maintenance of

subjective quality of life. Furthermore, the current research proposes that

secondary control strategies act to maintain positive cognitive biases in an adaptive

range in the face of failure. When faced with stressful situations, secondary control

strategies act to accommodate the information so that subjective quality of life is

not decreased. These may include social comparison as proposed by Brown

(1986). The influence of positive cognitive biases on subjective quality of life may

be compromised for people with MS in a number of ways.

Cognitive Biases and Multiple Sclerosis

The maintenance of an optimal margin of cognitive distortion may be problematic

for people with MS due to unpredictable changes in physical and mental ability.

The individual may be frequently presented with feedback inconsistent with their positively biased cognitions. As their ability levels fluctuate so too does their

optimal margin of cognitive bias. This necessitates constant restructuring of

cognitive biases. For example, a person with MS may believe themselves to be a

good mother. However, this belief may be challenged by fluctuations in their

physical abilities, which restricts them from carrying out tasks they believe a good

mother should carry out. While failure experiences may maintain the upper

boundary of positive cognitive biases (Cummins & Nistico, in press), frequent

feedback from the external environment that is inconsistent with positively biased

cognitions lowers the optimal upper boundary of cognitive biases more than is

adaptive for people with MS. This may result in a reduction of positively biased

cognitive distortion that has a negative impact on subjective quality of life.

Self-Esteem and MS

Consistent with the hypothesised effect of failure experiences on positive cognitive

biases, people with MS have a self-concept that is more negative than people


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without chronic illness that tends to remain stable after an initial adjustment period

of approximately ten years (Brooks & Matson, 1982). It seems that the secondary

control strategies maintaining positive cognitive biases in the face of failure are

defeated following diagnosis of MS, but that over time positive cognitive biases are

re-established. However, it is also likely that positive cognitive biases are never

fully restored to levels comparable to those without chronic illness (Brooks &

Matson, 1982).

Primary Control and MS

As discussed, positive biases of primary control are not always adaptive. Indeed,

the Discrimination Model of control (Folkman, 1984; Thompson, et al, 1998)

proposes that for people in uncontrollable situations, secondary control may be

more adaptive than primary control. However, there is limited research regarding

the adaptive function of cognitive biases of primary control specifically regarding

people with MS. Pakenham (1999) found that the use of problem-focused coping

(primary control) was associated with better adjustment to multiple sclerosis than

the use of emotion-focused coping (secondary control). Other research that has

looked at control in relation to MS exacerbation found that people with MS tendedto favour emotion-focused coping techniques whilst in periods of illness

exacerbation, and problem-solving or the use of social support in periods of

remission (Warren, Warren & Cockerill, 1991). Thus, the limited research

suggests that people with MS use primary and secondary control in the way

described by the Discrimination Model and that this is adaptive. They use primary

control in times when the situation is controllable and secondary control when the

situation is less controllable.

However, the ability of people with MS to maintain primary control and mediate

their stress through secondary control may be compromised due to the

unpredictable nature of their illness. Individuals may be faced with variations in the

adaptiveness of primary and secondary control due to their fluctuating ability to

control life situations. For example, behavioural efforts to seek control may be

limited by disability and reliance on others that varies between illness remission and


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exacerbation. Generalised beliefs in personal control may also be compromised by

the unpredictable nature of MS, rendering the individual with little information as

to the future course of their illness, to the difficulties that they may face, or to their

ability (physically and emotionally) to deal with these difficulties. Consistent with

this, an association between uncertainty regarding the future and psychosocial

adjustment has been found in people with another chronic condition, diabetes

(Landis, 1996). It therefore seems likely that people with MS may be at risk of

using primary and secondary control in less than optimal ways, which may result in

lowered subjective quality of life.

Optimism and MS

Whilst positive cognitive biases regarding the present are likely to be diminished,

especially in people who have been newly diagnosed, the research previously

outlined suggests that positive cognitive biases regarding the future (optimism) are

likely to be large in people with MS who have little concrete information about the

future. As discussed, self-deception is greatest under conditions of information

uncertainty and high motivation. MS is an extremely unpredictable condition. As

such, MS is likely to provide circumstances of information uncertainty. People withMS are likely to be highly motivated to avoid a future possible self that may be

severely disabled and crippled by MS. Also, the individual may be unsatisfied with

their present self. Thus, MS is also likely to provide circumstance of high

motivation. These factors taken together suggest that positive cognitive biases

regarding the future are likely to be larger in people with MS than other people.

Consistent with this is Fournier, de Ridder & Bensings (1999) finding of

significant unrealistic optimism with regards to negative events in a sample of

people with MS. Unfortunately, these findings were not compared to people

without chronic illness. As individuals without chronic illness also exhibit positive

cognitive biases regarding the future (Brown, 1986), one cannot conclude based on

this information whether people with MS have greater biases of optimism than

other people. This thesis will explore this issue by comparing the magnitude of

optimistic bias between people with MS and people unaffected by chronic illness.


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Summary

Positive cognitive biases in self-esteem, primary control and optimism have been

proposed to maintain subjective quality of life within the range of 50 to 100% SM,

provided they are within the threshold for the optimal range of cognitive bias.

However, positive cognitive biases may affect the subjective quality of life of

people with MS differently than other people without chronic illness. It is likely

that people with MS experience more failure experiences that serve to decrease the

positivity of their cognitive biases and may experience difficulty mediating their

stress through secondary control. In contrast, people with MS are likely to

demonstrate greater bias in optimism than other people due to the unpredictable

nature of MS.

Perceived Social Support

Social support has also been positively associated with subjective quality of life

(Abbey, Abramis & Caplan, 1985; Holahan et al, 1996; Revenson, Schiaffino &

Gibofsky, 1991; Schaefer, Coyne & Lazarus, 1981). Several considerations are

necessary when assessing social support. Firstly, perceptions of availability of social support, rather than the use of social support, are related to well-being.

Thus, a measure of the perceived availability and value of social support is a more

sensitive indicator of its effects than objective measures. For example,

Cunningham McNett (1987) found that perceived availability of social support was

positively related to coping effectiveness in wheel-chair-bound individuals.

Schaefer et al. (1981) similarly found that perceived social support was more

strongly associated with well-being than objective measures of social networks in a

general population sample. They claimed that when objective measures of social

network size are used to indicate the benefits of social support, two questionable

assumptions are made. One is that any benefits are directly proportional to the size

of the network. The second assumption is that having a relationship is equivalent

to getting support.


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The second consideration necessary when assessing social support is that social

support can be characterised as either positive or problematic. Positive support is

characterised by social interactions that provide affect, affirmation, or aid.

Problematic support is defined as instances of social interaction that are perceived

as non-supportive, even though the providers actions may have been well

intended. Both positive and problematic support appeared to make independent

contributions to psychological well-being (Holahan et al, 1996; Revenson et al,

1991). In summary, when assessing the effect of social support on subjective

quality of life, it is necessary to use a subjective measure that is sensitive to both

potential positive and problematic aspects of social support.

There has been considerable debate regarding the association between stress,

perceived social support and subjective quality of life. Two explanations have been

proposed. The buffering hypothesis proposes that support buffers people from

stressful events. The second hypothesis proposes a direct effect: that social

support has a beneficial effect irrespective of whether people are under stress

(Cohen & Wills, 1985). The evidence for the hypotheses is now discussed.

Consistent with the stress-buffering hypothesis, social support has been shown to

have an impact on positive well-being for people under stress. Social support plays

an important role in coping and psychosocial adjustment in individuals and families

with MS (Weinert, 1988). Social support also has a substantial impact on positive

well-being for people with arthritis (Germano, 1996), and coronary heart disease

(Holahan et al, 1996). Social support enhances recovery, increases adherence to

treatment recommendations and promotes psychological adjustment (Revenson et

al, 1991). Abbey et al. (1985) also found support for the stress-buffering role of

social support for normal people experiencing different levels of stress. However,

consistent with the proposed direct effect, social support also has a beneficial effect

for people not under stress. For example, Schaefer et al. (1981) found a direct

positive association between perceived social support and emotional well-being in

their general population sample, but found no support for the proposed stress-

buffering effect of social support.


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Cohen and Wills (1985) claimed that this phenomenon is explained by the presence

of a threshold for social support. This threshold may change in response to

stressful life circumstances, such that the phenomenon of social support as a buffer

against life stressors simply reflects a heightened need, or threshold, for social

support. When people are under stress, people may require more social support or

feel the absence of social support more acutely. It is likely therefore that people

with MS require more social support than others in order to maintain their

subjective quality of life, especially during times of illness exacerbation.

In addition to exerting a direct effect on subjective quality of life, perceived social

support may also influence the perception of stressors. As discussed earlier, stress

is defined as an environment that is appraised as taxing or exceeding resources and

endangering well-being (Folkman, 1984). Social support can influence the

perception of a stressor by providing the individual with resources to deal with life

circumstances. With higher levels of resources, individuals with high levels of

perceived social support are likely to view fewer situations as exceeding their

resources than someone with low levels of perceived social support.

Perceived social support may also exert its effect on subjective quality of life

indirectly by effecting the use of secondary control strategies. Individuals with

high levels of perceived social support may utilise different secondary control

strategies than those low in perceived social support. Consistent with this

supposition, Holahan et al (1996) found that social resources were significantly

related to the use of coping strategies that were also significantly associated with

well-being in people with coronary heart disease.

In summary, perceived social support has been found to have a positive influence

on subjective quality of life. Perceived social support can be classified as two

types: problematic and positive. These differently influence subjective quality of

life. Thus, measures of social support need to be subjective and sensitive to the

potential problematic and positive effects of social support. It is likely that there is


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a minimum threshold for perceived social support. When people are under stress

this threshold rises such that they have a heightened need for social support. As

well as exerting a direct effect on subjective quality of life, it is proposed that

perceived social support may also influence the perception of stressors. A

discussion of the ways in which MS may effect social support follows.

Social Support and Multiple Sclerosis

While it is likely that people with MS have heightened social support needs, social

support may nevertheless be compromised for people with MS. Decreased social

support has been inversely associated with the length of illness (OBrien, 1993),

and increasing disability for people with MS (Stenager, Knudsen, & Jensen, 1991).

A decrease in perceived social support coupled with a heightened need for social

support will likely result in reduced subjective quality of life for people with MS.

Consistent with these propositions, Aronson (1997) found that interference by MS

with social activities is strongly associated with decreased subjective quality of life.

Perceptions of social support and social activity may decrease for people with MS

and their partners for a number of reasons. For example, physical disability may

restrict both the person with MS and their partners ability to maintain socialinteraction, and their potential increased reliance on others can alter relationships.

Many people with MS are unemployed. Between 50% and 80% of people with MS

are unemployed within ten years of disease onset (Ko Ko, 1999). Hammond et al

(1996) examined over two thousand people with MS in Australia, overall 50% of

men and 27% of women reported being unemployed and they found lower rates of

participation in the paid workforce in more disabled patients. People with MS are

also less likely to be employed than people with other chronic conditions such as

inflammatory bowel disease and rheumatoid arthritis (Rudick, Clough, Gragg &

Farmer, 1992). Unemployment can negatively affect social support and, in turn,

subjective quality of life. Consistent with this, unemployment has been significantly

associated with social support (OBrien, 1993) and with the reported quality of life

of people with MS (Aronson, 1997; Gulick, 1997).


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Partners of people with MS may also have compromised social support, as their

activities may also become restricted. Consistent with this, chronic illness research

of married couples shows that they spend more time with each other in the home

and less time in network relationships and activities outside the home (Bartels

DesRosier, Cantanzaro & Piller, 1992). Also, while intimate relationships

positively impact on subjective quality of life for people without illness (Diener et

al, 1999), the link between intimate relationships and subjective quality of life is not

as clear for people with chronic disability. Intimate relationships have been

positively associated with subjective quality of life of people with MS (Gulick,

1997). However, in a study of wheel-chair-bound individuals, Cunningham

McNett (1987) found that non-married subjects coped more effectively than

married subjects.

Summary

Perceived social support has been positively associated with subjective quality of

life. It is likely that there is a minimum threshold for perceived social support,

which increases in time of stress. Thus, this threshold is likely to be raised in

people with MS, such that they feel the absence of perceived social support moreacutely than other people. However, this increased need for social support is likely

coupled with decreased opportunities for social support through unemployment

and physical limitations. This is likely to have a negative impact on their subjective

quality of life.

Chapter Summary

The limited influence of objective life conditions and the consistency of life

satisfaction evaluations suggest that subjective quality of life is held at a set point

by a psychological mechanism. This chapter has so far reviewed and analysed the

current state of literature in regards to the psychological factors associated with

subjective quality of life and their relation to MS. The factors discussed were

personality, positive cognitive biases, social support and secondary control. The

following conclusions regarding these factors were reached.


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The personality traits of extraversion and neuroticism are associated with

subjective quality of life. These traits may influence subjective quality of life in two

ways. Personality can influence the perception of a stressor and can act to mediate

the negative impact of a stressor on subjective quality of life through coping

efforts. This influence of personality on subjective quality of life is likely to be

compromised for people with MS who experience emotional disturbance and

cognitive impairment that may result in changes in personality.

Positive cognitive biases in control, optimism, and self-esteem have been proposed

to maintain subjective quality of life within the range of

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