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CHAPTER 7
Study One
Introduction
The first study was designed to inform the second, larger quantitative study that tests the validity of the proposed model for the maintenance of subjective quality of life. A series of scales will be used in the second study to assess the variables of the model, which are: subjective quality of life, personality, perceived social support, self-esteem, optimism, primary control and secondary control. The scales include: the Comprehensive Quality of Life Scale (Cummins, 1997a), the Perceived Social Support Scale (Schaeffer et al., 1981), the Primary and Secondary Control Scale 3rd Edition (Maher, Misajon, Heeps & Cummins, 2001), the neuroticism and extraversion subscales of the NEO Five-Factor Inventory (Costa & McCrae, 1992), the Rosenberg Self-Esteem Scale and the Life Orientation Test (Scheier & Carver, 1985). These scales are widely used, and some are standardized. However, their utility for people with MS has not been established. Thus, the purpose of this first study was to ensure that the materials for use in the second study were valid for people with MS.
This first study utilised a qualitative method known as ‘photovoice’, which is similar to one used previously by Wang and Buris (1991). Participants took photographs of things that either positively or negatively effected their quality of life. These photographs were then used as a focus for an interview regarding quality of life.
Method
Participants
All participants were people with MS who were members of the MS Society of Victoria. MS Society staff selected individuals from their member database on the basis of social and illness characteristics (e.g. Employment status, disability level) to ensure a range of characteristics in the sample. All participants had partners and were without other major medical conditions. Equal numbers of males and females were recruited for the study to ensure that the questionnaires for the second study are valid for both genders. This varied from the actual proportion of males and females with MS in the general population. MS affects three women for every two men (MS Society Australia, 2000).
Fifteen people agreed to take part in the research. Of the fifteen, three later withdrew from the study due to aggravated illness. Two withdrew after they reported another major medical condition, which excluded them from the research. One participant withdrew from the study for health reasons. The final sample consisted of four males and five females. Details of the sample are summarised in Table 7.1
Table 7.1
Sample Characteristics
Gender / Age(years) / Years in current relationship / Diagnosed
(years ago) / Symptom Onset (years ago) / Self–rated disability
(0 totally dependent
on others -
10 independent)
M / 56 / 34 / 3 / 14 / 5
M / 45 / 22 / 7 / 18 / 7
M / 44 / 17 / 9 / 12 / 9
M / 57 / 33 / 8 / 18 / 3
F / 55 / 33 / 4 / 10 / 9
F / 53 / 26 / 14 / 30 / 7
F / 44 / 13 / 3 / 19 / 9
F / 57 / 31 / 13 / 23 / 9
F / 37 / 14 / 8 / 15 / 9
N= 9 / X 49.78 / X 24.78 / X 7.67 / X 17.67 / X 7.44
SD 7.36 / SD 8.49 / SD 4.00 / SD 6.06 / SD 2.19
The mean age of the sample was approximately 50 years. The average diagnosis of MS was approximately seven and a half years ago, with an onset of symptoms ten years previously. Most people were in long-term relationships averaging 25 years and reported little reliance on others. Thus, all of the participants were in their current relationship when they were first diagnosed with MS.
Materials
Participants completed a set of demographic and illness-related questions. These are shown in Appendix D. These comprised of questions regarding the participant’s age, gender, years in current relationship, years since diagnosis and disablement by MS. Years since onset of MS was also asked as symptoms can precede diagnosis by a number of years due to the vague nature of some symptoms (MS Sclerosis Australia, 2000).
Procedure
Participants were provided with a disposable camera and asked to take photographs of things that either positively or negatively effected their quality of life. Participants were asked to take as many photographs as they liked. These photographs were then used as a focus in qualitative interviews. Approval for the study was obtained from the Deakin University Ethics Committee (Appendix A)
Recruitment of participants
Participants were first contacted by telephone by MS Society staff. They described the project and asked permission for further contact from the researcher. Those who agreed to be contacted were sent a plain language statement describing the research (see Appendix B) by the MS Society. Forty participants were contacted in this manner. They were requested to provide their contact details in a reply-paid envelope addressed to the researcher if they wished to take part.
People who supplied their contact details were then contacted by telephone by the researcher. The methodology of the study was described, and their suitability for involvement was assessed. A series of options were offered to ensure that the methodology was appropriate to their level of physical ability and lifestyle. For example, participants were advised that they could enlist the help of friends, family, or the researcher to help them with their involvement if required.
Meetings were arranged for exchange of a disposal camera. At this meeting, a consent form (see Appendix C) and the survey of demographic and illness details (see Appendix D) were completed. Each participant was asked to take photographs of things that negatively or positively effected their quality of life over the following two weeks.
Once the photographs had been taken, the cameras were returned via reply-paid post. The photographs were processed, and telephone contact was made again to arrange a suitable time for an interview. Most of the interviews took place in the participant’s home. Two of the participants were interviewed at their workplace. Interviews took approximately one hour to complete. The interviews were recorded by dictaphone and later transcribed.
Interview Procedure
The interviews began with a brief summary of the purposes and procedures of the research. Participants were then asked to describe how each photograph either positively or negatively affected their quality of life. Some of the questions were designed specifically to relate to the life domains of the Comprehensive Quality of Life Scale (ComQol). This scale will be described in more detail in the introduction to the second study. In brief, the scale comprises of satisfaction and importance ratings of seven domains of life - material well-being, health, productivity, relationships with family and friends, safety, inclusion in community and emotional well-being. It was hoped that such questions would reveal which life domains were important to people with MS and also obtain information regarding sources of social support relevant to the Perceived Social Support Scale. Two questions were also asked to determine the importance of religion or spirituality, as MS Society staff suggested that this area might be especially important to people with MS.
Participants were also asked questions relating to how they cope with everyday difficulties. If they described something that negatively affected their quality of life, questions were asked in order to determine the way they coped with that negative aspect. Also, following discussion about the photographs, participants were asked a series of questions to assess the ways they coped with life difficulties. These questions were designed to elicit information relevant to the Primary and Secondary Control Scale. The interview protocol is shown in Appendix E.
An explanatory statement was sent after involvement in the research was complete. This statement informed participants that the research was specifically interested in comparisons between the quality of life of people with MS, their partners and a control comparison group. This was not revealed during involvement in the research because previous research shows that people evaluate and maintain their quality of life in part, through comparing themselves to other people (Brown, 1986). Therefore, participants may have compared themselves to these people when thinking about their quality of life if they had known that the research was interested in such comparisons. This could have changed the way they answered some of the questions. The explanatory statement is shown in Appendix F.
Data Analysis
Recordings of interviews were transcribed and analysed in relation to the proposed scales for use in Study Two in the following ways:
Demographic Questions. Demographic information reported in the interviews was compared with that recorded on the questionnaire for accuracy. Comments regarding the suitability and comprehension of the questions were collated.
The ComQol. Transcripts were analysed for references to the seven domains of quality of life. A record was made each time a participant reported that one of these domains contributed, either positively or negatively, to their quality of life. Additionally, transcripts were screened for reference to any other domain of life.
The Perceived Social Support Scale. Transcripts were analysed for references to various forms of social support. Each time a source of support was cited, this was recorded.
The Primary and Secondary Control Scale. This scale was analysed in a similar way as the ComQol. Transcripts were screened for reference to the various items of the scale. A record was made each time participants mentioned strategies for dealing with difficult situations that were similar to the scale items. Additionally, transcripts were screened for mentions of any other ways that individuals coped with difficult situations.
The NEO Five-Factor Inventory, the Rosenberg Self-Esteem Scale, and the Life Orientation Test. Information obtained from the interviews regarding illness symptoms and course was used in the screening of these scales for items that might be biased towards people with MS due to confusion with symptoms of MS. For example, some of the items of the NEO Five-Factor Inventory refer to energy levels, which are likely to be compromised by MS.
Data analysis was undertaken by two independent raters in addition to the researcher in order to ensure reliability of the results. Raters were advised of the methodology and aims of the study, and were trained in the content and purpose of the scales. They were not informed of the demographic characteristics of the participants. Raters then meet to discuss their findings. Discussion continued until consensus regarding the findings was obtained.
Results
The content of the photographs was not explicitly analysed. The photographs were used only as a focus point for discussion. People took photographs of a variety of everyday things that they later identified as having positive or negative influences on their subjective quality of life. Positive influences included sources of support such as family and pets, things from which they gained a sense of achievement such as home renovations, relaxation activities such as the beach where they took their evening walk and the newspaper they read every morning. Negative influences included medications that were unpleasant to take, home repairs and chores left unfinished due to illness, and things that restricted their movement at home such as wheel-chairs, cramped hallways and unsuitable bathroom fixtures. The findings of the study based on the interviews regarding these photographs are now presented in relation to each scale.
Demographic Questions
Some of the demographic questions were identified as offensive or difficult to understand. Specifically, the item word ‘normal’ in two items was identified as potentially offensive to people with MS. Also, the item that asked participants to rate their current illness state compared to their normal state was identified as confusing to people with progressive MS who found it difficult to identify their normal state. Comparison between information obtained during interviews and that recorded on the demographic questionnaire, confirmed that three of the participants had incorrectly answered this item.
Comprehensive Quality of Life Scale (ComQol)
A record was made each time a participant identified a factor that influenced their quality of life. For example, walking with friends, academic or occupational achievements and friendships. These were then grouped into different life domains. For example, relationships with friends and family were grouped under the existing ComQol life domain ‘intimacy’. Comments relating to frustration with lack of independence, and forced reliance on others for practical support were grouped under a new life domain ‘independence’. Table 7.2 shows a summary of this analysis.
Table 7.2.
Analysis of ComQol life domains
Domain / Description / Frequency mentionedExisting domains
Intimacy / Relationships with family and friends / 9
Productivity / Achievements / 8
Health / Ill-health / 7
Place in community / Doing things with people outside the home / 7
Material well-being / Possessions / 5
Emotional well-being / Happiness / 1
Safety / Safety / 0
Newly Identified domains
Independence / Relying on others / 5
Recreation (without others) / Walking, physical activity / 3
Comfort at home / Wheelchair access, use of appliances, ease of movement around house. / 2
Was religion important? / Question asked directly / 2Y 7N
No. of participants = 9
All the domains of the ComQol were mentioned, with the exception of ‘safety’. However comfort at home such as wheelchair access to rooms and disability friendly appliances was mentioned and was incorporated into this domain Also, the emotional well-being domain was only mentioned once. People spoke about the simple things in their lives that contributed to their quality of life - a garden outlook, a clean house, morning walks, reading the paper, or a sun-drenched room. They also frequently spoke about the people in their lives. Partners, children and pets were often cited as important sources of support.
In regards to potential additional life domains, religion or spirituality was not identified as especially important to the majority of these people. The most frequently mentioned additional life domain was ‘independence’. This included frustration with a lack of independence such as having to rely on others for transport, or for assistance with chores around the house. This domain was viewed as separate to the ‘productivity’ domain, as many of the participants were taking part in productive activities, such as full-time employment or childcare, but with assistance from others (e.g. transport to work, help at home) that compromised their feelings of independence. For example, the following quote illustrates the frustration experience by one man due to his forced reliance on other people for transport at times of illness exacerbation:
‘… some of the negative parts of life, going back four or five years ago, I couldn’t catch trams I had to be driven to one place and another’
In summary, the seven domains of the ComQol were confirmed to be important to people with MS. However, ‘Independence’ was identified as a potential additional important life domain for people with MS due to the frequency it was mentioned by participants.
The Primary and Secondary Control Scale
Participants used most of the strategies identified by the Primary and Secondary Control Scale. They also reported using many strategies to cope with difficulties other than the ones described by the scale. Table 7.3 is a summary of the initial analysis of the interviews in relation to the existing items of the Primary and Secondary Control Scale.
Table 7.3.
Analysis of the Primary and Secondary Control Scale
When I have difficulty doing something: / Frequency mentionedPrimary Control
I look for different ways to achieve it / 5
I work as hard as I need to achieve it / 3
I try to overcome it / 2
I don’t give up until I reach my goal / 1
Secondary Control
I remember that I am much better off than many other people / 7
I tell someone about it to make me feel better / 5
I think about my success in other areas / 4
I work as hard as I need to achieve it / 3
I look for something positive in my situation / 3
I feel okay, because I always knew I might fail / 2
I remember that you can’t always get what you want / 2
I ignore it / 1
I think of the success of my family and friends / 1
I do something to take my mind off things / 1
I can see it is not my fault / 1
I tell myself that it doesn’t really matter / 0
I know that things will work out okay in the end / 0
Potential Additional Items
I ventilate (yell, scream, or cry) / 4
Give up / 4
I accept it / 3
I get more information about MS / 3
I remind myself that it’s because I have MS / 2
I have a rest / 2
I get help from someone / 2
I find pleasure in other things / 1
I remind myself I can’t change it / 1
I remind myself that I’ve done my best / 1
I find other interests / 1
I see other people with MS / 1
I get frustrated / 1
I don’t call for help unless necessary / 1
n = 9
In the next step of analysis, items judged to be similar in content were combined, and items were judged as either primary or secondary control based on Wiesz et al.’s (1984) typology of primary and secondary control. As discussed previously, primary control is defined as a belief that one can influence existing realities. Secondary control, on the other hand, is defined as accepting or adjusting to one’s situation, such as when one is having trouble loosing weight. Table 7.4 shows this step of the analysis.
Table 7.4.
Analysis of Potential Additional Primary and Secondary Control Scale Items
Potential Additional Items / Frequency mentionedPrimary Control
Give up /stop doing it / 4
I get more information about MS / 3
I get help from someone/Don’t call for help (inverse) / 3
Secondary Control
I ventilate /get frustrated / 5
I accept it / 3
I remind myself that it’s because I have MS / 2
I have a rest (distraction) / 2
I find pleasure in other things/Find other interests / 2
I remind myself that I can’t change it / 1
I remind myself that I’ve done my best / 1
I see other people with MS / 1
n = 9
More potential secondary control than potential primary control items were identified. This could be an artefact of the interview questions or reflective of actual usage of control strategies. This will be further explored in the second study.
The most frequently cited novel strategy used in response to difficult situations were ‘ventilation’ and ‘give up’. The majority of participants mentioned these. Ventilation was judged to be a secondary control strategy as it can be viewed as part of accepting or adjusting to one’s situation, and is not directed at changing the situation. The use of ventilation is illustrated by the following quote from a female in her late forties: