CHAPTER 8STUDY TWO

Introduction

The current state of the literature regarding subjective quality of life and related

variables was discussed in the first five chapters of the thesis. It was suggested

that subjective quality of life can be affected by subjective circumstances, but is

largely maintained through a combination of psychological processes. A model

was presented for the maintenance of subjective quality of life. This model is

based on previous research and includes personality traits, positive cognitive

biases of self-esteem, optimism and primary control, secondary control and

perceived social support.

Study One was designed to inform the suitability of materials to be used in the

second study. This was achieved through qualitative interviews with people with

MS. This second study aimed to establish whether the proposed model for the

maintenance of subjective quality of life is valid for people with MS, their

partners and a comparison control group. A set of self-report questionnaires

designed to measure the variables of the model was administered to these three

groups. It is hypothesised that the variables of the model interact differently

between these groups of people. For example, that these groups would differ in

their relative emphasis on primary and secondary control and the degree to which

the various variables influenced their subjective quality of life.

The interactions between the variables of the model will now be discussed. The

specific aims and hypotheses of the second study are then presented. These

hypotheses are based on the proposed model and the adaptive outcome of primary

and secondary control. The methodology of the study is then described, followed

by a section on the data analysis and findings of the study. The chapter concludes

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with a discussion of the findings of the study in relation to the hypotheses and

previous research.

Research Supporting the Proposed Model for the

Maintenance of Subjective Quality of Life

Research supporting the proposed interactions between psychological variables in

the maintenance of subjective quality of life is now discussed. The psychological

variables are personality, positive cognitive biases of self-esteem, primary control

and optimism, perceived social support and secondary control.

The Role of Personality

The personality traits of extraversion and neuroticism have received the most

attention in relation to subjective well-being and are assessed in this research.

Specifically, individuals who are high in neuroticism (or negative affect) are more

likely to experience distress and dissatisfaction (Clark and Watson, 1991),

whereas individuals high in extraversion (or positive affect) are less effected by

stressors (Fogarty et al, 1999). Thus, personality effects the perception of

stressors. Specifically, people high in neuroticism or low in extraversion are

likely to perceive more stressful situations and are subsequently likely to be more

negatively effected by these situations than other people.

Personality also indirectly affects subjective quality of life by influencing

individual’s coping efforts. For example, people high in neuroticism affect may

select maladaptive coping strategies (Fogarty et al, 1999). The effect of

personality of subjective quality of life is assessed in this thesis.

The Role of Positive Cognitive Biases

Positive cognitive biases are a positive set of attributes about the self. These were

discussed in more detail in the introductory chapters. Cummins and Nistico (in

press) claim that positive cognitive biases in self-esteem, primary control and

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optimism contribute to the maintenance of satisfaction with life. Stressors can

challenge these positive attributes about the self. For example, becoming ill

challenges the belief that health is controllable. However, stressful life

circumstances can result in an increase in the positivity of cognitive biases of

optimism. 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. These conditions may occur in stressful situations where future

outcomes are unknown, and positive outcomes are highly desired.

The second study of the thesis assesses the magnitude of positive cognitive biases,

and resulting effect on subjective quality of life in people with MS, their partners

and those unaffected by chronic illness. The effect of positive cognitive biases on

subjective quality of life is hypothesised by this thesis to be mediated by

secondary control.

The Mediating Role of Secondary Control

Secondary control is proposed to mediate between positive cognitive biases and

subjective quality of life. This is based on the definition of secondary control, as

accepting or adjusting to one’s situation and involves cognitive strategies such as

goal disengagement and social comparison. Thus, consistent with Baron and

Kenny’s (1986) definition of a mediator, secondary control accounts for the

relation between positive cognitive bias (predictor) and subjective quality of life

(criterion), and explains how external physical events take on internal

psychological significance. Some support for a mediating role of coping has been

found in study of spousal caregivers of Alzheimer’s patients (Pruchno & Resch,

1989). The mediating role of secondary control is explored in this study.

Secondary control is contrasted with primary control that is defined as a belief that

one can influence existing realities (Wiesz et al, 1984). In the proposed model,

primary control is conceptualised as a positive cognitive bias. Primary and

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secondary control, and their adaptive outcome, were discussed in more detail in

the first introductory chapter.

The Adaptive Outcomes of Primary and Secondary Control

Integral to the process described by the model is the adaptive functioning of

primary and secondary control. There has been considerable debate regarding the

adaptive outcome of the two constructs. This thesis has concluded based on

previous research that optimally adaptive functioning is associated with a balance

in the availability of both types of control, such that individuals have a repertoire

of control strategies involving relatively high levels of both primary and

secondary control strategies. An imbalance between primary and secondary

control results in lowered levels of positive psychological adjustment (Heeps,

2000). Further to this, the use of high primary control is adaptive provided that

the situation is controllable, and the use of secondary control is more adaptive

when the situation is uncontrollable (Folkman, 1984; Thompson et al, 1998). The

adaptive outcomes of primary and secondary control are further assessed in this

study.

The Role of Perceived Social Support

Perceived social support is hypothesised to directly effect subjective quality of

life. This is based on previous research that consistently demonstrates a positive

association between social support and subjective quality of life (Holahan et al.,

1996; Revenson et al, 1991; Schaefer, Coyne, & Lazarus, 1981). This association

has been demonstrated for both people under stress and people not under stress

(Cohen & Wills, 1985; Weinert, 1988). Further to this, the effect of perceived

social support on subjective quality of life is subject to a threshold effect that is

influenced by stress, such that when people are under stress they require more

social support or feel the absence of social support more acutely (Cohen & Wills,

1985). This threshold effect will be explored by examining the influence of

perceived social support of the subjective quality of life of people with MS,

potentially subject to stress, compared to people unaffected by chronic illness.

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Perceived social support is also hypothesised to influence the adaptive use of

primary and secondary control. Consistent with this supposition, social resources

have been significantly related to the use and effectiveness of coping strategies for

both people with coronary heart disease (Holahan et al, 1996) and in wheel-chair-

bound individuals (Cunningham-McNett, 1987).

Perceived social support may influence subjective quality of life through its

influence on the perception of stressors. This supposition is based on Folkman’s

(1984) definition of stress that is an environment that is appraised as taxing or

exceeding resources. This thesis hypothesises that people high in perceived social

support, with higher levels of resources, are likely to view fewer situations as

exceeding or taxing their resources than someone with low levels of perceived

social support.

The Influence of Life Circumstances

Life circumstances exert only a small influence on subjective quality of life

(Argyle, in press). This is evidenced by the consistency of life satisfaction

evaluations between people with very different objective life conditions and has

resulted in the proposal of a life satisfaction gold standard of 75+/-2.5%SM

(Cummins, 1995).

The research discussed has demonstrated some ways that life circumstances can

negatively influence psychological variables. For example, positive cognitive

biases can be reduced by failure experiences (Cummins & Nistico, in press). In

this way chronically stressful life circumstances can defeat psychological

processes and result in lowered subjective quality of life. In evidence of this,

people with MS often report a lowered subjective quality of life (Canadian

Burden of Illness Study Group, 1998; Gulick, 1997; Nortvedt et al.,1999). The

influence of MS on the variables of the model and subjective quality of life is

assessed in this study.

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The research discussed so far has also demonstrated that some of the variables of

the model can also influence perception of life circumstances as stressful.

Specifically, low extraversion, high neuroticism and low perceived social support

are likely positively associated with perception of stressors. The influence of

these variables on the perceptions of stressors will also be explored in this study.

In summary, this thesis has developed a model, based on previous research that

explains the psychological process that maintain subjective quality of life at a set-

point. This model was presented in Chapter 5 and is now briefly discussed.

Summary: A Model for the Maintenance of Subjective Quality of Life

The proposed model describes the psychological process by which subjective

quality of life is maintained in the adaptive range. Subjective quality of life is

largely influenced by personality. Furthermore, positive cognitive biases of

primary control, self-esteem and optimism, and perceived social support effect

subjective quality of life. Positive cognitive biases can be influenced by life

circumstances and provided they are within an ‘adaptive range’, subjective quality

of life is maintained within the adaptive range of 50-100%SM. The effect of

perceived social support on subjective quality of life varies depending on life

circumstances, such that people require more perceived social support when under

stress.

Integral to the model is the adaptive functioning of primary and secondary control.

Secondary control is hypothesised to mediate between positive cognitive biases

and subjective quality of life. The adaptive outcome of the use of secondary

control strategies in response to stressors, relative to increased beliefs of personal

competence to deal with stressors (primary control) varies depending on the

controllability of the situation. Optimal functioning is associated with a relatively

high availability of both primary and secondary control responses to stressors, and

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the increased use of secondary control in uncontrollable situations. The model is

illustrated in Figure 8.1.

It is hypothesised that this model represents a dynamic homeostatic process. The

variables of the model are continually changing in response to the stressor in an

attempt to maintain subjective quality of life in the adaptive range of 50-100%SM.

The influence of personality, positive cognitive bias, perceived social support, and

secondary control on subjective quality of life is supported by previous research.

Cummins and Cahill (in press) proposed a way that personality and positive

cognitive bias influence subjective quality of life. In addition to this, it is

proposed in this thesis that perceived social support also exerts a direct effect on

subjective quality of life, and that secondary control mediates between positive

cognitive bias and subjective quality of life. This new model is tested in the

second study.

Figure 8.1

Model for the Maintenance of Subjective Quality of Life

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SecondaryControl

Subjective Qualityof Life

Perceived Social Support

ExtraversionNeuroticism

FIRST ORDERDETERMINANTS:Personality

SECOND ORDERDETERMINANTS:Internal Buffers

THIRD ORDERMEDIATING DETERMINANT

Positive Cognitive Biases

Self-EsteemOptimism

Primary Control

Environmental Factors

The implications of the findings of Study One are now discussed.

Implications of the Findings of the First Study

The first study explored the factors that people with MS perceived to be important

to their subjective quality of life, and the way in which they coped with everyday

difficulties. This was achieved through semi-structured interviews. The purpose of

the first study was to ensure that the materials for the second study were both

appropriate and valid for people with MS.

The study resulted in some changes to the materials for the second study.

Specifically two items were added to the Primary and Secondary Control Scale. A

life domain was added to the Comprehensive Quality of Life Scale. The

Perceived Social Support Scale was modified to remove the social network

prescribed by the scale. A subscale pertaining to support received from pets was

added. Items potentially sensitive to people with MS were identified in the NEO

Five Factor Inventory and in the Rosenberg Self-Esteem Scale. These new items

and potentially sensitive items are analysed for their validity and reliability in the

second study.

The findings also provided some support for the proposed associations between

the variables of the proposed model. For example, participants reported a strong

association between social support and subjective quality of life. Also, consistent

with the hypothesised mediating effect of secondary control, participants

frequently reported using secondary control strategies to help themselves feel

better about difficult experiences. For example, when participants when faced an

insurmountable difficulty, they reported that they often felt better about this when

they reminded themselves that they are not as bad off as some others. This

anecdotal evidence is further tested through quantitative means in Study Two.

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The participants in the Study One reported more secondary control than primary

control. Thus, it appears that people with MS use more secondary control than

primary in response to potentially uncontrollable situations. However, as the first

study did not measure the subjective quality of life of the participants it was not

possible to determine the adaptive outcome of primary and secondary control. The

second study explores this further.

In summary, the findings of the first study resulted in modifications of the

materials for the second study. The findings also provided some anecdotal

evidence for some of the proposed associations of the proposed model namely the

influence of perceived social support, and the use of secondary control in response

to challenges to positive cognitive biases. The hypotheses of the study are now

presented.

Hypotheses

This study’s hypotheses are based on the proposed model for the maintenance of

subjective quality of life and the adaptive outcome of primary and secondary

control.

The Model for the Maintenance of Subjective Quality of Life

It is hypothesised that the model for the maintenance of subjective quality of life

is valid for people with MS, partners of people with MS, and controls. However, it

is expected that these groups maintain their subjective quality of life in different

ways, such that the variables of the model interact in different ways in the

different groups. It is specifically hypothesised that:

Hypothesis 1: The subjective quality of life of the three comparison

groups differs, such that people with MS have the lowest subjective

quality of life. Partners have a higher, and controls have the highest

subjective quality of life.

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Previous research has found that life circumstances usually exert only a small

influence on subjective quality of life (Argyle, in press). However, people have

reported a lowered subjective quality of life than people without illness (Canadian

Burden of Illness Study Group, 1998; Gulick, 1997; Nortvedt et al., 1999).

Hypothesis three is based on the proposition that MS provides stressful life

circumstances sufficient to defeat the model for subjective quality of life for

people with MS, and, to a lesser degree, their partners.

Hypothesis 2: Perceived social support and positive cognitive biases

predict subjective quality of life after the variance contributed by

personality has been controlled.

This hypothesis is based on Cummins and Cahill’s (in press) homeostatic model

for subjective quality of life and the direct effect of perceived social support on

subjective quality of life found by previous research (Holahan et al., 1996;

Revenson et al, 1991; Schaefer, Coyne, & Lazarus, 1981).

Hypothesis 3: Secondary control mediates between positive cognitive

biases and subjective quality of life.

This hypothesis is based on the theoretical definition of secondary control, which

is defined as accepting or adjusting to one’s situation, and involves cognitive

strategies such as goal disengagement and social comparison (Wiesz et al, 1984).

It is proposed that secondary control accommodates failure experiences so that

subjective quality of life is maintained in an adaptive range.

The Magnitude of Positive Cognitive Biases

As discussed, positive cognitive biases of self-esteem, optimism, and control are

proposed to exert a direct effect on subjective quality of life. The fourth and fifth

hypotheses postulate the magnitude of these biases.

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Hypothesis 4: Positive cognitive biases of primary control and self-

esteem are smaller for people with MS than partners and controls.

This hypothesis follows from the assumption that people with MS likely

experience failure frequently that will serve to decrease the positivity of their

cognitive biases.

Hypothesis 5: Optimism is higher for people with MS than partners

and controls.

In contrast to the previous hypothesis that claims that positive cognitive biases

will be less in people with MS due to increased failure experiences, it is expected

that cognitive biases of optimism will be larger in people with MS. This

hypothesis is based on Robinson and Ryff’s (1999) assertion that perceptions of

future well-being, or optimism, are particularly subject to self-enhancement

biases, and that self-deception is greatest under conditions of information

uncertainty and high motivation. MS may provide such conditions.

Perception of Life Circumstances

As discussed, some of the variables of the model may effect the perception of life

circumstances. It is hypothesised that:

Hypothesis 6: High neuroticism, low extraversion and low perceived

social support positively predict perceptions of MS as stressful.

This is based on research that has found that individuals who are high in

neuroticism (or negative affect) are more likely to experience distress and

dissatisfaction (Clark and Watson, 1991), whereas individuals high in extraversion

(or positive affect) are less affected by stressors (Fogarty et al, 1999). However,

the effect of social support on the perception of life circumstances is newly

hypothesised in this thesis and is based on Folkman’s (1984) definition of stress.

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This thesis hypothesises that people high in perceived social support, with higher

levels of resources, are likely to view fewer situations as exceeding or taxing their

resources than someone with low levels of perceived social support.

The Threshold Effect of Perceived Social Support

Further to the hypothesised direct effect of perceived social support, it is

hypothesised that perceived social support is subject to a threshold effect. This is

based on previous research that demonstrates that social support is beneficial to

well being (Cohen & Wills, 1985; Weinert, 1988), and that people under stress

may require more social support or feel the absence of social support more acutely

(Cohen & Wills, 1985).

Hypothesis 7: Perceived social support is more strongly correlated

with subjective quality of life for people with MS, than partners of

people with MS and controls.

The Adaptive Outcome of Primary and Secondary Control

The following two hypotheses are based on the adaptive outcome of primary and

secondary control.

Hypothesis 8: The use of secondary control is positively associated

with the subjective quality of life of people with MS and partners, but

not controls. The use of primary control is negatively associated with

the subjective quality of life of people with MS and partners, but not

controls.

This is based on the Discrimination Model of control (Folkman, 1984; Thompson

et al, 1998), that 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 controllable. MS potentially provides

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uncontrollable situations. This hypothesis is consistent with the first study that

found more use of secondary control than primary control in people with MS.

Hypothesis 9: Individuals with high levels of both primary and

secondary control have a higher subjective quality of life than those

who exhibit a preference for either primary or secondary control.

This is based on recent research that suggests that optimally adaptive functioning

is associated with a balance between primary and secondary control. An

imbalance between primary and secondary control results in lowered levels of

positive psychological adjustment (Heeps, 2000).

The hypotheses of the study were tested through administration of self-report

questionnaires to people with MS, partners of people with MS, and a control

comparison group. The methodology of the study is now presented.

Method

Participants

70 people with MS, 43 partners of people with MS, and 99 comparison controls

took part in the second study. People with MS and their partners were recruited in

a number of ways. In the first instance they were randomly selected from the MS

Society’s database and received an invitation for themselves and their partner to

take part. 198 people with MS were sent invitations. Of these 35 people with

MS, and 19 partners agreed to take part, representing a response rate of 17.7%.

Secondly, the findings of the first study were published in an article in ‘MS Life’,

the national magazine of the MS Society of Australia. People with MS and their

partners were invited to contact the researcher either by phone, email, or mail if

they would like to take part in the research. In the third instance, a brief article

was published in the ‘Herald Sun’, a large daily statewide newspaper. This article

briefly described the research and again asked people with MS and their partners

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to contact the researcher if they wanted to take part in the research. Fourthly, in

the last instance, ‘People with MS, Victoria’ and ‘People with MS, Queensland,’

two statewide networks of self-help support groups for people with MS, were

contacted. An email was sent from the president of the groups to the members,

asking for participants for the research. Again people were asked to contact the

researcher if they wanted to take part. Two questionnaires, one for someone with

MS and one for a partner of a person with MS, were also sent to each group leader

in the two states. Group leaders were asked to distribute the questionnaires to

interested people. 36 people with MS and 20 partners responded to these three

forms of recruitment, yielding a total of 71 people with MS, and 41 partners. The

total response rate cannot be calculated as it unknown how many people received

the invitation.

Participants without chronic illness and with partners, to act as a control

comparison group, were recruited in two ways. First they were recruited from a

database held at Deakin University. These are people who have taken part in

previous Deakin University research, and had indicated that they were willing to

take part in future research. 96 questionnaires were sent to people from this

database, 64 completed questionnaires were returned, yielding a response rate of

66.7%. In the second instance, questionnaires were randomly sent to people in the

local telephone directory. 200 questionnaires were sent in this way, 35 completed

questionnaires were returned, yielding a response rate of 17.5%. Thus, the total

response rate for controls was 33.4%.

Of the completed questionnaires, 15 were excluded due to the presence of other

medical conditions, resulting in a final sample of 66 people with MS, 37 partners

of people with MS, and 93 controls. The study design did not require both

partners to participate. As a result only ten matched couples took part.

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Materials

This study utilised a self-report questionnaire (shown in Appendix H) that

contained the following questions and scales:

Demographic questions.

Demographic questions were slightly different for the three interest groups.

People with MS, their partners, and controls were all asked their gender, age,

years in current relationship, and presence of major medical conditions applicable

to either themselves or their partner. People with MS were also asked illness status

questions including; time since diagnosis of MS, time since symptom onset, type

of MS, presence and severity of pain, presence of other major medical conditions,

and degree of disablement from MS. Partners were also asked the illness status

questions about their partner and to what extent their partner’s MS effected their

ability to live the life that they would like.

The Comprehensive Quality of Life Scale (ComQol) (Cummins, 1997a)

The ComQol was used to measure subjective quality of life through assessing

importance and satisfaction of the seven domains of quality of life, specifically;

material well-being, health, productivity, intimacy, safety, community and

emotional well-being. This scale has been used with various groups of people, for

example, adolescents, elderly people and Greek migrants, and has demonstrated

good validity and reliability (Cummins, 1999).

An additional life domain of ‘independence’ was added based on findings of the

first study. The wording of items for this new domain was the same as for other

domains.

The Perceived Social Support Scale (Shaeffer et al, 1981)

The Perceived Social Support Scale measured perceived social support across

three domains of emotional, tangible, and informational support with five items in

total. The scale asks participants to list their spouse, close friends, relatives, co-

15

workers, neighbours, and supervisors and then rate each person on a 1-5 scale for

each of five separate questions pertaining to the availability and utility of the three

domains of support.

This scale was modified for this study. In Study One people with MS did not

mention all the people prescribed by the scale and they mentioned other sources of

support, including health professionals and pets. Thus, the wording of the scale

was changed to ask participants to consider all possible support sources when

answering the questions, suggestions were provided including partners, family,

friends, and health workers. Questions regarding pets were also added. Three

items of the original scale, suitable for analysing support received from pets, were

duplicated with the word ‘someone’ substituted with ‘your pet’. For example, ‘in

the last month, how much did someone boost your spirits when you felt low?’

became ‘in the last month, how much did your pet boost your spirits when you felt

low?’

The NEO Five-Factor Inventory (Costa & McCrae, 1992)

The NEO Five-Factor Inventory was used to measure neuroticism and

extraversion. Twelve items were used to assess each factor. This scale was

examined in the first study for items that might be biased towards people with

MS. Two items were identified, these were ‘I often feel as if I’m bursting with

energy’, ‘my life is fast-paced’, and ‘I am a very active person’. Responses to

these potentially biased items were closely monitored.

The Primary and Secondary Control Scale, 3rd Edition (Maher et al, 2001)

The Primary and Secondary Control Scale was used to evaluate primary and

secondary control strategies. This scale asks the respondents to rate the frequency

with which they use a list of primary and secondary control strategies when they

have difficulty doing something. The scale measures primary control and four

types of secondary control. Self-protective secondary control strategies are those

that reduce the negative impact of the situation, and includes items such as ‘I can

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see it is not my fault’, and ‘I always knew it might happen’. Self-affirmative

secondary control strategies increase positive feelings about the self and include

downward social comparison, and thinking about the success of family and

friends. Avoidant secondary control items include ‘I do something different, like

go for a walk’ and ‘I ignore it’. Situation Bias secondary control includes

strategies related to seeing the situation in a more positive light including ‘I look

for something positive’.

Additional items were included in the scale based on the findings of the first

study. These were ‘give up’, and ‘ventilation’. These were categorised as

primary and secondary control based on Wiesz et al.’s (1984) definitions. ‘Give

up’ was classified as primary control, as it is the inverse of beliefs in personal

competence. ‘Ventilation’ was classified as secondary control as it is likely

related to accepting or adjusting to situations. These new items were assessed for

contribution to the reliability and factor structure of the scale.

The Rosenberg Self-Esteem Scale (Rosenberg, 1965)

Self-esteem was measure using the Rosenberg Self-Esteem Scale. This is a ten-

item test comprising of five negatively worded items and five positively worded

items. Participants were asked to rate their agreement with items such as ‘I feel I

have a number of good qualities’ and ‘At times I think I am no good at all’. This

scale is widely used to assess self-esteem and has demonstrated good reliability

and validity (Crandall, 1973; Rosenberg, 1965). Examination of this questionnaire

in the first study identified one item that may be confounded by the symptoms of

MS, this is ‘I am unable to do things as well as other people’. Responses to this

potentially biased item were closely monitored.

The Life Orientation Test (LOT) (Scheier & Carver, 1985)

The LOT measures optimism and pessimism. This scale asks participants to

endorse three positively worded items and three negatively worded items.

Previous research indicates that optimism and pessimism are empirically

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differentiable (Marshall, Wortman, Kusualas, Hervig & Vickers, 1992) and that

the positive subscale of the LOT test is sufficient to measure optimism validly

(Lai, 1994). As this research is interested in evaluating optimism only, the three

positively worded items evaluating optimism were included. These items included

‘In uncertain times, I usually expect the best’.

Some researchers argue that optimism measured by the LOT is indistinguishable

from the personality trait neuroticism. However, a recent large-scale investigation

by Scheier, Carver & Bridges (1994) demonstrated that optimism is a separate

construct and that the scale possesses adequate predictive and discriminate

validity. Thus the LOT is measuring a factor that is distinguishable from the

neuroticism factor measured by the NEO Five-Factor Inventory.

Questions were asked in the same order for all participants namely; demographic

questions, ComQol, the Primary and Secondary Control Scale, the NEO Five-

Factor Inventory, the Rosenberg Self-Esteem Scale, the Life Orientation Test, and

finally the Perceived Social Support Scale.

Procedure

Participants completed the questionnaire in one of three ways: manually,

electronically, or verbally by telephone. In the manual mode of completion,

participants were sent a plain language statement describing the research (shown

in Appendix G), the questionnaire (shown in Appendix H), a consent form (shown

in Appendix C), one small envelope and a reply-paid envelope. Participants were

asked to read the plain language statement then, if they wished to take part, sign

the consent form and seal it in the small envelope, then complete the questionnaire

and return in the reply-paid envelope with the small sealed envelope inside. 170

participants completed the questionnaire in this way, including all the controls.

In the electronic mode of completion, participants requested that the questionnaire

be emailed to them. A file comprising the plain language statement and

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questionnaire was sent to the participant. Again, participants were asked to read

the plain language and then complete the questionnaire if they wished to take part.

Participants either return-emailed the completed questionnaire, or they printed out

the questionnaire, manually completed the questionnaire, and posted it to the

researcher. 26 participants returned an electronic questionnaire.

One participant with MS completed the questionnaire by telephone. This option

was provided to enable the participation of people with motor or vision

impairments. The participant contacted the researcher by telephone requesting this

modality. The researcher read both the plain language statement and the consent

form to the participant. Once verbal consent to take part in the research had been

given, the researcher proceeded to read out the items of the questionnaire. The

researcher recorded the participant’s answers on a questionnaire.

People with MS, their partners, and controls were not informed of the comparison

between the three groups. This was because previous research indicates that

people may compare themselves to others when evaluating their self-worth

(Brown, 1986). Thus, knowing that the research was concerned with comparisons

between people with MS and controls may have confounded the results. Similarly

to the first study, an explanatory statement was sent to participants after their

involvement in the research. This statement is shown in Appendix F for people

with MS and partners, and in Appendix I for controls. This statement informed

participants of this omission and explained the underlying rationale. Approval for

the study was obtained from the Deakin University Ethics Committee (Appendix

A). The findings of the study are now presented.

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