Quality of life as defined by adults with spinal cord injuries.

Quality of life measures have assumed increasing importance in the field of rehabilitation (Fabian, 1990) and in the medical literature (Gill & Feinstein, 1994) in the last decade. In the field of rehabilitation, quality of life measures have been widely used for evaluating program outcomes (Fabian, 1991). Various aspects of medical outcomes (Borgel et al., 1992; Fletcher et al., 1992), have also been assessed using quality of life measures, especially in respect to patients with chronic illnesses (O'Boyle, 1992). Reasons for increased attention on quality of life measures include a growing awareness that improving quality of life is an inherent goal for rehabilitation programs (Fabian, 1991) and that examination of quality of life is an important attribute of patient care evaluation in medicine (Gill & Feinstein, 1994).

Although emerging as an important research focus in both rehabilitation and medicine, problems related to the use of quality of life assessment have been noted. In a discussion of the application of quality of life theory, Fabian (1990) stressed the lack of clarity in the meaning of quality of life. Fabian described quality of life as a useful term for measuring subjective well-being, but stated that definitions remain ambiguous. Fabian (1991) also reviewed assessment approaches to measuring quality of life in rehabilitation program evaluation. She emphasized that one of the underlying constraints with using quality of life measures in rehabilitation evaluation was that most of the methodology was based on unidimensional discrepancy models. These models examine the discrepancy between the current situation and the desired situation. "Although multidimensional evaluation paradigms have been proposed, few evaluators incorporate subjective measures of client outcomes..." (p. 345) in the evaluation of rehabilitation programs. Fabian concluded that although the examination of quality of life is recognized as an essential aspect in the field of rehabilitation research, lack of a clear definition of quality of life and measurement issues remain problematic.

In a discussion by Whiteneck (1994) on measuring key rehabilitation outcomes, three themes appeared as central to her conceptualization of disablement and the rehabilitation process. One of these themes concerned increased emphasis on commitment to quality of life measurement and greater recognition of the importance of subjective perceptions in assessing outcomes in rehabilitation. She emphasized that subjective perceptions afforded information not obtained by traditional objective measures and were needed to gain understanding concerning the meaning of quality of life.

Whiteneck's view was in concert with Gill and Feinstein (1994) who stated that one of the most promising avenues for clarifying the meaning of quality of life is to obtain direct responses from participants concerning their perceptions. As highlighted by Gill and Feinstein (1994), problems surrounding the measurement of quality of life in the medical literature include definitional ambiguity and lack of a unified approach for the development of quality of life assessment instruments. They used two data sources, the Spilker Quality of Life Bibliography (Spilker et al., 1990) and the National Library of Medicine Bibliographic Retrieval Services, Inc. (MEDLINE). Their review was limited to articles meeting the following criteria: (a) written in English, (b) included the term "quality of life" in their titles and (c) described or used a minimum of one questionnaire or instrument to measure quality of life. The Spilker Quality of Life Bibliography included 579 articles published through 1989. From this pool, 170 articles met the above criteria. Two MEDLINE searches were completed. The first search, conducted to identify articles published after the Spilker Bibliography, yielded 434 articles, of which only 200 met the eligibility criteria. The second MEDLINE search was restricted to 13 prominent medical journals and resulted in 96 eligible articles. From each of the three pools of eligible articles, 25 articles were randomly selected. Therefore, a total of 75 articles were selected for review. Each article was reviewed in two areas: (a) examination of the definition of quality of life (i.e., how quality of life and its components were defined) and (b) evaluation of instruments employed for measuring quality of life. Results regarding the definition of quality of life indicated that quality of life was conceptually defined in only 11 (15%) of the 75 articles. In respect to instruments used, a total of 159 different assessment tools were used, of which 136 were used only once. Four of the 75 articles used only a global rating for quality of life. In the 71 remaining articles, only 9 (13%) included opportunities for subjects to supplement stipulated items with personal responses. Overall, Gill and Feinstein noted both a lack of clarity of meaning in the medical literature and a lack of consistency in the methods used to measure quality of life. These authors stressed that quality of life can be measured appropriately only by allowing patients the opportunity to express their individual opinions and preferences. Gill and Feinstein (1994) concluded that the first step in improving quality of life measurement should be to develop creative strategies to obtain and weigh individual responses. They emphasized that quality of life is not measured by rating only health status, but is a personal perception, encompassing both medical and nonmedical aspects of life.

There is a need to go beyond rating scales and discrepancy model analyses to understand the meaning of quality of life from the viewpoint of people with disabilities. Virtually absent from the literature is an understanding of quality of life through direct responses of adults with physical disabilities. Therefore, this qualitative study was designed to obtain perceptions of adults with spinal cord injuries concerning the meaning of quality of life. Small group discussions were conducted to explore two aspects of quality of life: a) the meaning of quality of life, and b) the domains that contribute significantly to quality of life.

Method

Research Participants

Eligible participants were adults whose use of a wheelchair for mobility had extended for at least one year prior to the beginning of the current study and were classified as either paraplegic or quadriplegic. Participants were recruited using purposive convenience sampling. An announcement was sent to members of a regional spinal cord injury association who met participant eligibility. The announcement explained the purpose of the study and asked for participation. Members of the association were asked to communicate interest in participating by contacting either the principal investigator or the president of the spinal cord injury association. Twenty-one members from the association expressed interest in the study. Two of the investigators contacted each interested participant by phone to obtain confirmation of intent to participate, schedule each participant for a specific date to participate, and answer questions regarding the study. All 21 interested respondents scheduled participation on one of three dates for group discussions. Although each of the 21 respondents scheduled a date to participate and received a written reminder of their scheduled participation prior to the date, only 12 adults, eight men and four women, aged 26 to 62 years actually participated. Reasons for participant attrition included changes in availability of transportation and illness.

Occupations of the participants included university instructor, priest, substance abuse counselor, a rehabilitation counselor, state casework assistant, consultant for assistive technology center, retired engineer, and self-employed environmental consultant. Only four participants were not gainfully employed. Of these, one attended graduate school, one was a volunteer leader of a health team serving people with disabilities, and two were unemployed. In respect to educational levels, four participants had completed master of arts degrees, six had completed undergraduate degrees, and two had completed one to two years of college study.

Procedures

Human subjects approval was obtained from the university research review board. Three group discussion sessions were conducted at the site of the regional spinal cord injury association meetings. The discussion groups were conducted over a 3-month period. In each group, the number of participants ranged from three to five. Although originally planned as focus group sessions, small group sizes did not allow the discussions to be classified as focus group sessions as defined by Krueger (1988) and Packer, Race, and Hotch (1994). Individual follow-up telephone interviews were conducted during the month following each group session to verify results and gather additional data participants wished to add to the original responses.

Data Collection

Each participant was asked to complete a demographic data form and audiotape consent form before each discussion. The group discussion sessions lasted from 1 hour 15 minutes to 1 hour 30 minutes and were audiotaped. Each group was led by two of the investigators; one served as principal moderator and the second served as a recorder throughout each session. To facilitate discussions and to provide a standard protocol, the following questions were used to guide the principal moderator in each session:

1. What is quality of life? Describe what this means.

2. What are the most important contributors to your quality

of life?

3. When someone asks you to rate your overall quality of

life, what things do you think about?

4. What aspects of your life were important factors that influenced your quality of life this past week?

Responses to question one were compiled to gain a better understanding concerning the meaning of quality of life. Responses to the remaining questions were compiled to examine what domains were considered the most important contributors to quality of life.

Data Analysis

Verbal responses recorded on cassette tapes were transcribed verbatim. The data were segmented by responses to the guide questions as explained above. Two investigators independently summarized each response and coded these responses by pattern coding as described by Miles and Huberman (1994). Coding enabled the investigators to group the data into large categories. Categories consisted of related individual responses and allowed the investigators to develop domains. After independently coding the data, the investigators compared their coding of the responses. Inter-rater reliability between these two researchers using percent of agreement was 96%. Disagreements were discussed and coding definitions related to these disagreements were modified so that agreement was reached. The third investigator independently coded the responses and obtained 98% agreement with the coding of the other two investigators.

Results

Participants offered responses concerning two aspects of quality of life: a) the definition of quality of life, and b) identification of the most important life domains or categories to their quality of life. Data relating to these two aspects are presented with subheadings under each aspect.

Defining Quality of Life

Participants provided two types of responses in reference to the meaning of quality of life: 1) responses that characterized the nature of the term quality of life and 2) responses that provided a definition. In respect to the nature of quality of life, participants described the construct as subjective and developmental. Data relating to the subjective nature of quality of life included, "We are talking about real subjective things, I've heard men who have had major traumas say that if I can't go fishing, it is not worth living. ...you have to respect that,... I'm more holistic." Other responses included, "It has to be an individual thing...you can't live by someone else's definition." The subjective nature of quality of life was also expressed in the comment, "You can be a writer, poet, or whatever, and get tremendous satisfaction and get quality of life in your own mind greater than anybody that you'll ever know. It's probably a quality of life that's different than any other person's in the world." Therefore, quality of life was characterized as subjective in that it means different things to different people.

Quality of life was characterized as developmental in the sense that it changes throughout life as priorities change. This characteristic was indicated in statements as "If you asked a year later, you would get different answers, once you grow, you get away from small things,... people change, people grow". Other comments included, "Year after year, I have adjusted to changes, and my quality of life changes" and "I think it's an ever changing thing". Overall, quality of life was characterized as a subjective construct that changes as people progress through the lifespan.

In addition to the subjective and developmental character of quality of life experienced by all people as a result of maturation, participants described how their perspective of quality of life changed as a result of the experience of disability. The experience of disability was described as a catalyst for changing their perceptions of quality of life. Participant responses included,

I was an adult when I went into a chair. I actually

started growing. I think my quality of life opened up

or, actually, increased because of what happened to me...

I went back to school and became involved in sports.

It opened a lot of avenues.

Participants in each group agreed that before their physical traumas their priorities were different and that cognitive abilities assumed greater importance in respect to quality of life. Comments representing this shift in importance of priorities included, "Before my accident, I didn't even know I had a mind, now ... ability to use my mind spills over into every aspect of life" and, "Before my accident, I wouldn't have taken time to sit and talk about quality of life, I was so busy doing what I thought was living. It was just existing". Other comments included, "The one thing that I know... out of all the tragedy that my disability has encompassed, the one thing, one redeeming quality that I have left, that I have been able to expand, is my mind."

In respect to defining quality of life, these participants emphasized most strongly that quality of life meant degree of satisfaction with life. Satisfaction was explained as how closely one comes to meeting life goals. Participants described satisfaction with life as "How closely dreams match reality". This central definition of quality of life was repeated as "What satisfies me and makes me happy" and, "What I want to get out of life and what satisfies that". Personal or self satisfaction was described as the primary component of satisfaction, more important than satisfaction based on external standards such as monetary status. Responses by participants as, "Self satisfaction ... I would say seems more gratifying than money", were repeated in each session.

Comments concerning the meaning of quality of life emphasized that quality of life is characterized by contrasting elements. Quality of life was described as the "Things that are positive or negative that give your life specialness". Participants identified both negative as well as positive aspects of life as essential ingredients of life. Comments included, "There is always the good and the bad" and, "You've got to have one against the other to know whether it's good or bad."

Quality of Life Domains

Participants in the study identified several life domains that strongly influenced their quality of life. These life categories emerged from the responses as concepts in personal stories relating to the participants' lives and in specific statements relating to the questions presented in each group session. Responses concerning three of the most important domains are presented under subheadings of attitude toward life, work opportunities, and level of resources. Also, responses that described the interaction of these life domains and the experience of disability are presented herein.

Attitude Toward Life

The participants stressed that attitude toward life was one of the most significant influences on quality of life. This psychological variable was described as involving a state of mind that colors one's perception about themselves and life. Attitude toward life was described as both the factor in life that allows an individual to move forward despite obstacles and as the factor in life that can cause stagnation, hence interfering with growth. One woman described attitude as the most important aspect and continued, "If you have a poor attitude, it doesn't matter what else you have, your quality of life is poor. I think you make your own quality of life with your attitude." Other comments included, "It has a lot to do with your personal attitude. There may be somebody wealthy, tons of family, physically healthy, intelligent, but they're still negative, bitter, depressed. They feel their quality of life is poor".

Attitude changes resulting from the experience of disability emerged as significant influences to quality of life. Participants spoke of changes related to the experience of disability that influenced their quality of life in positive ways as, "I look at it like this, I was a 25 year-old hellion with a shaved head before my accident. I think I'm a better person than what I was then. I took life for granted, and then boom, I got a big awakening." Another man explained, "I feel I have more feeling and empathy now. And care more. Because you realize in a moment how fragile you are." Other participants agreed and one expressed, It's kind of like a gift... over the years, I've evolved into thinking about the greater scheme and believing that, yeah, we all exist in our little pigeon holes for a reason. And believing that, you can take this (disability) and be a burden with it. You can live with it as a burden or you can live with it as a gift.

One participant stated that as a result of his experience of disability, he developed a "Tao" attitude. He described this attitude as a perception that fosters acceptance and appreciation of the flow of events of one's life. His comments included, "The way I look at it, my attitude has changed to what I call the `Tao of Disability', of going with the flow." He described times when he was "down" with pressure sores as not creative times, but times for introspection. "I hate being down, but those times turn into little retreats. They can be like little gifts in certain ways because I am able to read and visit. This relates to what I call my theory of the Tao of Disability". His acceptance was described not in the sense of giving up, but described as an opening up which allows one to see other interpretations and, therefore, other options.

Opportunities to Work

Participants stressed that opportunities to contribute and create through their occupations and/or related activities were fundamental contributors to quality of life. Responses concerning these work opportunities were intertwined with self satisfaction in two areas: l)work involving service to others, and 2) work focusing on creative endeavors. It was evident from the data that both these areas contributed vital meaning to their lives.

Satisfaction from providing service to others emerged as the most strongly expressed aspect of work. In expressing the importance of service to others, one woman, a leader of a health team serving people with disabilities, expressed,

I have found that I can achieve almost as much

now as before my disability. . . that increases my

quality of life a great deal. When I don't have

anything to give, when I'm not able to contribute,

that's going to be the end (of quality of life).

Other responses emphasizing this aspect of work and elucidating the power of involvement in work to modify self perception included,

When I'm doing what I do best, I'm not disabled

for that moment. And I think that's more true

when I'm working than at any other time. When

I'm working, because I do group therapy and I'm

sitting in a group with other people and everybody

else is sitting, ...I am out of my chair. I am able to

help people vent. It's almost musical; theatrical, ...

I don't feel like my body parts aren't moving.

In addition to work providing service to others, creative work was an essential aspect in quality of life. Comments included, "With me, quality of life is always connected with creativity" and, "Well, for me personally, but this might be whether I was disabled or not, it (quality of life) is time to do my work, my creative work and my job work." Also representative of the importance of creative activity for quality of life was the following comment, "Is it (quality of life) creativity, is it my ability as a writer, is it getting more things published? ... I would say all of these things."

Responses relating the unique elements associated with disability that influenced occupational opportunities concerned energy expenditure. According to these participants, the amount of time consumed by the disability for maintaining professional obligations is enormous. One individual explained that quality of life was significantly influenced by the amount of energy it takes to get ready for the day. "It takes an inordinate amount of time just to get ready.... just where are the resources, physically and emotionally, after we spend so much time just getting the basics done to get out of the house?" In other words, the immense energy expenditure for daily living activities represents "time consumed by the disability" that becomes a "distracter" from one's occupational efforts, thus negatively influencing quality of life.

Level of Resources

Resources encompassed a wide range of needs, including basic needs such as housing and food to other needs, such as attendant care, transportation, and financial income. Participants addressed resources as a foundation for quality of life and emphasized that level of resources corresponded to degree of ability to direct energy into other areas such as work. As one woman stated,

It's not easy to have an excellent quality of life if

your basic needs are not met. As you get housing,

clothing, family needs taken care of, then you are

able to have a better quality of life. And I think

for a lot of people with disabilities that meeting

basic needs just to get going in the morning,

many times are not being met.

These participants stressed that although the ability to create and contribute were significant factors influencing their quality of life, the opportunities to achieve in these areas was strongly influenced by level of resources. Described eloquently by one of the participants, "You can't go out and look at the stars without taking care of the wheelchair or without attendant care."

Attendant care was a basic need frequently cited as a concern related to quality of life. The importance of this issue on the quality of life of individuals with disabilities is further emphasized by the response, "....without having a quality attendant care giver, my ability to do much of anything else is severely restricted." Also, "It's a full time job for me to be sure the attendants are scheduled and the money paid....so then I have the ability to look outside and to see what it is that I can do otherwise".

Discussion

"Satisfaction with life" emerged as the main theme in the participants' definition of quality of life. Defined as a measure of life satisfaction based on comparing what one has achieved (contributed and/or created) and what one expected he or she would have achieved. Therefore, these participants' primary definition of quality of life was in concert with previous research (Gauthier, 1987) and similar to one of the theoretical models presented by O'Boyle (1992). In this model (O'Boyle, 1992) quality of life is "reflected by the differences between a person's expectations and that individual's present experience" (p. 395). Quality of life is dependent on an individual's subjective vision of expectations for the present and future based on past experience. Since this comparison, described by one participant as, "how closely dreams match reality", underpins the perception of quality of life, the discrepancy between dreams and reality should be addressed in attempts to comprehensively assess quality of life.

The emphasis on quality of life as developmental or changing throughout the lifespan as well as the descriptions of the changes in perception of quality of life as a result of the experience of disability also warrant attention. This finding indicates that quality of life measures need to consider both age or maturity level of clients and amount of time since onset of disability. Quality of life means different things to different people at different times in life. The developmental nature of quality of life was explored by Jones, Dagnan, Trower, and Ruddick (1996). These authors examined the relationship of quality of life with age and disability in respect to people with learning disabilities. These authors found that these subjects prioritize quality of life domains differently as they age.

Life domains identified as significant contributors to quality of life included: attitude toward life, opportunities to work, and level of resources. Although these three domains or variations of these three have been identified as important contributors in other studies (Gill & Feinstein, 1994) the degree of importance of these factors are not consistent with research of Kinney and Coyle (1992) who found that leisure satisfaction was the most significant predictor of life satisfaction. In our group discussions, only one participant stated that leisure activities played a major role in her quality of life. Perhaps since our participants were so strongly involved in work opportunities, their work itself played a role similar to leisure activities as described by Kinney and Coyle (1992).

In respect to national employment levels of people with disabilities, Richardson (1994) reported that, "half to two thirds of Americans with disabilities between the ages of 16 and 64 are not working at all" (p. 92). In Richardson's discussion of the impact of the Americans with Disabilities Act on employment for people with disabilities, she stated that only 13% of women with disabilities are employed full time. She includes a statement from the 1993 Rehabilitation Act Amendments that emphasized that although work is recognized as an activity that fulfills a need of individuals to be productive and fosters self-esteem, people with disabilities demonstrate staggering levels of unemployment. In contrast to Richardson's description, of the 12 participants in this study, eight were employed full-time. Therefore, two-thirds of the participants were fully employed and, in addition, two other participants reported meaningful work as a volunteer worker or a graduate student. Only two participants described themselves as unemployed. Compared to Richardson's description of people with disabilities concerning national employment levels, the participants in the current study demonstrated a high percentage of employment. It is important to note that this particular subject characteristic is greatly influenced by transportation. From the total number of 21 people expressing interest in participation in this study, only 12 participated. The remaining individuals offered lack of transportation and/or poor health as reasons for not participating. These nonparticipating individuals may have demonstrated an employment pattern more closely matching the national employment levels as reported by Richardson (1994) if lack of transportation and poor health are recurring situations in their lives.

Considering the responses concerning both the definition and the important contributing domains, the agreement that the meaning of quality of life is subjective needs qualification. The meaning of quality of life was subjective in that these persons weighed the importance of certain domains differently, but there was agreement that these life domains are important to all people. Therefore, for these participants, the uniqueness of the definition appeared to stem from the degree of importance of specific life domains.

Significant interactions between the contributing life domains must be noted. Attitude was described as one of the most important, but resources, especially in reference to basic needs, serve as a necessary foundation for positive attitude. In addition, these participants also emphasized that attitude toward life was influenced by opportunity to work. Certainly, participation in work endeavors was highly influenced by these participants' ability to access adequate levels of resources to maintain quality attendant care. Therefore, these three contributing factors emerged as extremely interdependent and interactive. The interaction of life domains should be considered an important aspect in assessing quality of life.

Finally, it must be emphasized that these findings are derived from a convenience sampling process, and therefore the applicability is limited. In examining participant characteristics, one notable characteristic is the high percentage of professional occupations held by these participants. The level of articulation and ability to analyze the meaning of quality of life and contributing domains was perhaps greatly influenced by this participant characteristic. Although not representative of the total population of adults with paraplegia or quadriplegia, the findings derived from these participants' responses underscore the importance of understanding both the individual's identification and weighting of specific life domains and how these domains interact to influence quality of life.

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Boni B. Boswell, Ph.D., Exercise & Sports Science, 153 Minges, East Carolina University, Greenville, NC 27858