CHAPTER ONE

Problem to be Investigated

Quality of life (QOL) “has become a notion bandied

around by politicians, human service providers,

policymakers, journalists, and especially academicians”

(Dijkers, 1996, p18). The field of rehabilitation has widely

adopted use of the phrase QOL, where it is suggested as a

primary outcome measure (Fabian, 1991; Roessler, 1996;

Rubin, Chan, & Thomas, 2003). Rubin, Fong, and Thomas (2003)

have studied the addition of pre-post measures of life

skills and QOL to existing employment data in order to

better assess dynamic vocational rehabilitation services

(VR). Bishop and Feist – Price have published work relating

QOL to rehabilitation counseling in a way that “makes the

philosophical practical” (Bishop & Feist – Price, 2002,

p202), in the planning, delivery and outcome evaluation of

vocational rehabilitation services.

With medical stabilization and function issues better

resolved, the QOL of the increasing population of persons

1

with spinal cord injury (SCI) is now considered the primary

emphasis of SCI rehabilitation (Charlifue & Gerhart, 2004;

Kemp & Ettleson, 2001; Putzke, Barrett, & Devivo, 2003).

With QOL as a primary emphasis, QOL must be included as a

primary measure of SCI rehabilitation (Dennis, Williams,

Giangreco, Cloninger, 1993; Dijkers, 1996, 2001; Fuher,

1996, 2001; Kemp & Ettleson, 2001; McAweeney, Forchheimer,

Tate, 1996).

At the same time the demand to use QOL in

rehabilitation grows, current literature reviewing research

on the use of QOL in rehabilitation , and especially SCI

rehabilitation, repeatedly points out the lack of a common,

consensual definition and conceptualization of just what QOL

is and how it is measured ( Bishop & Feist-Price, 2001,

2002; Boswell, Dawson, & Heininger, 1998; Dijkers, 1997,

1999, 2001. Fabian, 1990; Gladis, Gosch, Dishuk, & Crits-

Christoph, 1999; Kemp & Ettleson, 2001; May & Warren, 2002;

Pain, Dunn, & Anderson, 1998; Tate, Kalpakjian, &

Forchheimer, 2002). There are numerous studies on use of

rehabilitation QOL, however most studies are based on the

2

researchers’ own conceptualization and method of

measurement, driven by their interest and intended use (Gill

& Feinstein, 1994). Additionally, conceptual models of QOL

developed in rehabilitation research often utilize unique

taxonomies, furthering confusion. The current state of

confusion, in the development of the field of rehabilitation

QOL research is to be expected given the relatively short

period it has been a topic of research (Diener, 2000;

Dijkers, 1997; Schalock, 1990).

The subjective, idiosyncratic elements of QOL, symbolic

of the values of empowerment, choice, and self-direction,

currently identified in rehabilitation, make it useful as a

rehabilitation evaluation and planning tool, and outcome

measurement (Curtiss, 1998). The subjective, idiosyncratic

elements of QOL have also contributed to the lack of a

common understanding of QOL, its meaningful measurement, and

its utility in rehabilitation (Bishop & Feist-Price, 2001,

2002; Boswell, Dawson, & Heininger, 1998; Dijkers, 1997,

1999, 2001; Fabian, 1990; Gladis, Gosch, Dishuk, & Crits-

Christoph, 1999; Kemp & Ettleson, 2001; Pain, Dunn, &

3

Anderson, 1998). For rehabilitation professionals to

understand and apply QOL principles in the planning,

delivery, and evaluation of their services and

interventions, it is imperative to: clarify the term QOL as

it is relevant to non-medical rehabilitation; identify major

facets of QOL relevant to rehabilitation and determine the

relationships of the various facets, and; develop

appropriate rehabilitation QOL measures.

HISTORY and DEVELOPMENT of QUALITY of LIFE

For thousands of years humans have pondered the

philosophical question of what makes a “good life”. One of

the early Greek philosophers, Aristotle, sought to answer

this philosophical question. (Bowling & Windsor, 2001;

Cummings, 1999. Veenhoven, 1991). To better understand the

“good life”, Aristotle developed a conceptual model

explaining happiness, a construct today seen as synonymous

with “life-satisfaction” by many QOL researchers (Veenhoven,

1997). Aristotle chose objective indicators of happiness,

those external, observable aspects of life, often viewed as

4

having common value for all people. He observed that a

person in poverty would be labeled as having low QOL, while

a wealthy person would be seen as experiencing high QOL.

Thus, in Aristotle’s QOL model, wealth serves as an

indicator of happiness. Today Aristotle’s QOL model would be

referred to as an objective model, using, an observable,

objective indicator, level of wealth as an indicator of

happiness, or life satisfaction.

Thousands of years after Aristotle, in a 1967 study of

the correlates of happiness, Wilson summarized existing

research on the subject (Wilson, 1967). In that summary

Wilson (1967) developed a model of happiness, and reported

that in this model the happy person was well paid, young,

and healthy. Again, objective, observable, indicators

continued to be used as indicators of happiness.

Only in the past several decades has research shown

that measurements of happiness, subjective life

satisfaction, or QOL, utilizing objective indicators, such

as wealth, are able to account for a very small amount of

5

the variance found in QOL measurement (Campbell, Converse, &

Rodgers,1976; Diener, Sandvik, Pavot, & Gallager 1993) .

The first major step in the development of QOL, as it

has come to be used in the behavioral and social sciences of

the 21st century, was post WWII. America was experiencing

unprecedented economic and material growth during the 1950s.

Along with this surge in economic growth political concern

for social well-being developed. Major social blights,

ignorance, illness, and poverty, were under “social

control”. The national adoption of the goal that all

Americans have the right to not just a materially plentiful

life, but a quality life, led to the widespread use of the

phrase QOL (Day & Jankey, 1996. Veenhoven, 1997. ).

Social scientists utilizing survey research methods to

study the state of society in the 1960s-1970s began to study

the phenomenon associated with QOL measurement. Early

social scientist QOL researchers first popularized use of

the phrase “Quality of Life”, to indicate, as their studies

6

were showing, that there is much more to the state of modern

society, or the individual, than material welfare.

Social Indicators QOL

Objective indicators of the QOL of large groups of

people, such as per capita income, average educational

level, and un-employment rates, have been widely used in the

social sciences since the 1950s. These indicators have come

to be referred to as social indicators; used to measure

social indicators QOL. An early reported study that sought to

measure social indicators QOL came from President

Eisenhower’s Commission on National Goals. The phrase QOL

was not yet in popular use, however, Eisenhower’s Commission

on National Goals, in its 1960 report, reported on

education, public health, economic development, and

national defense. The Johnson Administration continued the

development and use of social indicators QOL as it sought to

enact the Great Society (Cummins, 1999; Flannigan, 1982).

The “Toward a Social Report” publication commissioned by the

Johnson administration, was highly influential as it

7

reported the state of the U.S. regarding major social

concerns such as: income, education, employment, health, and

safety. The public was being introduced to the idea that the

state of U.S. society could be systematically measured and

reported (Cummins, 1999). The National Goals Research Staff,

established by President Richard Nixon was charged with

“developing and monitoring social indicators that can

reflect the present and future quality of American life, and

the direction and rate of its change” (quoted in Campbell,

1981, p441). Shortly thereafter groundbreaking research by

major research institutions such as the Russell Sage

Foundation, the Institute of Social Research at the

University of Michigan, and the National Opinions Research

Center of Chicago began to study QOL and further spread the

use of the social indicators QOL concept (Flanagan, 1978,

1982).

Social indicators continue to be used as indicators of

QOL for large groups of people. QOL researchers focusing on

objective indicators for large groups of people are

sometimes referred to as the “social indicators research

8

tradition”, today composed primarily of economist and

geographers studying the environmental factors affecting QOL

(Dijkers, 1997). In the social indicators research

tradition, there is an assumption that indicators of

interest, such as un-employment or crime rates, are of equal

value to all people, hence objective. For example, studies

based on social indicators often report the QOL rankings of

various cities, retirement communities, and countries. Such

studies most often base their reports on external,

observable, objective indicators such as: per capita

income, prevalence of crime, number of theatres, and

employment rates.

Objective QOL

A more recent use of objective QOL, sometimes referred

to as the “second tradition school” of QOL study (Dijkers,

1996), focuses on the comparison of an individual’s

external, observable, objective QOL indicators with assumed

socially desirable QOL status The difference between social

indicators QOL and individual objective QOL is the unit of

measure. In social indicators QOL large groups of people or

9

political subdivisions such as countries, states, or

cities, are measured on various external, observable,

normative QOL indicators. Individual objective QOL measures

the individual’s status on various external, observable,

normative QOL indicators. .

The objective QOL school of researchers conceptualize

determinants of what makes life good as universal and of

equal importance to all persons. Objective QOL indicators

are chosen, often by professionals, according to their

assumed desirability of society as a whole (Dijkers, 1997).

Such indicators used in rehabilitation QOL have been: income

level, employment, location and desirability of residence or

living arrangements, level of education, level of function

as measured by professional observation. Such indicators

easily lend themselves to “best” and “worst” extremes,

reflecting the instrument designer’s definition and

determination of what affects QOL (Dijkers, 1997).

The individual’s objective QOL status, as measured by

external, observable indicators, is compared to the assumed

socially desirable normative indicators of QOL status. For

10

example higher income, or increased level of social

interaction, measured by observation, is assumed to indicate

a higher QOL; while lower income or less social interaction

is assumed to indicate a lower QOL.

Researchers in the field of rehabilitation QOL sometimes

include objective, observable indicators in their conceptual

model of QOL (Lawton, 1997; Roessler, 1990). Rubin, Chan,

and Thomas (2003) have recently suggested an outcome measure

for rehabilitation assessing QOL along with a measure of

life skills that includes objective measures of areas such

as “self care skills, mobility skills, communication

skills, interpersonal skills, health management skills, job

seeking skills, and vocational adjustment skills” (Rubin,

Chan, & Thomas 2003, p ). Using objective as well as

subjective indicators as part of a QOL profile provides

rehabilitation counselors a tool for checking congruence

between self-reports and actual circumstances.

SCI QOL researchers Kemp & Ettelson (1999; 2001),

conceptualize objective measures as being best used for QOL

11

measurement of large groups of people (social indicators),

and subjective measures being most useful for individuals.

However, in their SCI QOL studies of individuals they

continue to gather objective measures, in order to continue

studying the relationships between objective and subjective

indicators.

Objective, observable, QOL indicators are extensively

used in medical rehabilitation research, where there has

been a long held assumption that increases in health status

and function are strongly, positively correlated with

increases in QOL (Bergner,1989; Fuher, 1996). To better

specify their area of focus, and their objective methods of

measurement of QOL, the phrase, Health Related Quality of

Life (HRQOL) has been widely adopted by the medical

rehabilitation field, and the larger field of QOL research

as a whole (Gill & Feinstein, 1994). The medical approach to

QOL research has its focus on professionally directed cure

and survival (Anderson, 1982; Frisch, Day & Janekey, 1996).

Interest in HRQOL research is attributed, by some, to the

realization within the medical profession that extending

12

life with continually improving medical procedures does not

always result in improved QOL (Frisch, 1998). Medical QOL

research has primarily focused on objective measures and

professional ratings. There has been relatively little

research done within the medical field regarding

conceptualizing and defining QOL. Most medical QOL interest

has been on levels of pain and symptoms, with an assumption

that QOL has been enhanced if a decrease in symptoms or

increase in function can be demonstrated. There has

therefore, been a noticeable absence of interest in

subjective indicators in medical QOL. This is often

justified by the argument that objective indicators are

“harder” data, and more reliable than subjective, “soft”

data (Day & Janekey, 1996). While medical QOL research, with

its narrow focus , has a place in the medical field, it has

contributed very little to the development of an overall

conceptual model of QOL.

Medical QOL research has been prolific in turning out

QOL measurement instruments based on observable, objective

indicators; often designed for use with specific diseases or

13

medical procedures (Frisch, 1999; Lox & Freehill, 1999). For

example, the Chronic Respiratory Disease Questionnaire

(CRQ), used as a QOL measure in numerous physical medicine

studies, as well as an outcome measure useful for charting

client progress, has four subscales: dyspnea, fatigue,

mastery, and emotional function (Lox & Freehill, 1999).

There is an assumption that dyspnea and fatigue, symptoms of

the chronic disease, are major determinants of QOL. Indeed,

such severe, chronic, symptoms have been hypothesized as

acting as a “threshold” to any meaningful measure of QOL

(Cummins, 1999). Severe chronic pain has been shown to have

a significant inverse relationship to QOL scores, and is

likewise a disease symptom that is so invasive it prevents

most all life activities, thus, a threshold which must be

“crossed” before other QOL enhancing life activities can

take place (Lundqvist, Siosteen, Bloomstrand, Lind, &

Sullivan, 1991).

Subjective QOL

14

In 1960, Gurin, Verhoff, and Feld attempted one of the

first social indicators studies based on a true nation wide

survey (Flanagan, 1982). Their study, with the purpose of

exploring the mental health of Americans, reported on

“sources of happiness, things causing worries, and estimates

of probable happiness in the future” (Flanagan, 1982, p56).

Findings from this study sparked development of the “third

tradition” of QOL researchers; the “subjective tradition”

(Flanagan, 1982; Dijkers, 1997b).

By the 1970s research interest in the subjective nature

of QOL developed (Flanagan, 1978). In an early,

groundbreaking QOL research study, Campbell and Rodgers

(1972), reported that objective indicators could account for

less than 20% of the variance they found in an individual’s

QOL measure (Campbell & Rodgers, 1972; Day & Jankey, 1996).

It was apparent that there was more to QOL than economic

development. At the 1971 meeting of the Board of Directors

of the American Institutes for Research, a decision was made

to “direct a major research effort toward improving the

quality of life of Americans” (Flanagan, 1978, p138). Under

15

the direction of Flanagan, “the first step taken was to

define the critical requirements of a person’s quality of

life in an empirical manner” (p138). The focus of this

research shifted from those aspects of life thought common

to all people, the objective approach, to the development of

an understanding of the diverse perspectives and experiences

individuals attach to QOL, the subjective evaluation

approach.

The subjective approach emphasizes each individual’s

idiosyncratic, perspectives and evaluations of their QOL.

The subjective or subjective evalution approach is also

referred to as the psychological indicators approach, as the

QOL indicators of interest, subjective perceptions or

evaluations are internal, unobservable, psychological

processes (Day & Jankey). QOL researchers view these

internal evaluations, based upon the individual’s own scale

of comparison, “as the congruence [or disparity] between

aspirations and accomplishments [of the individual]”,

(Dijkers, 1997, p155). This level of congruence is self-

reported, and depending on the nature of instrument items,

16

may seek to tap cognitive or emotional evaluations.

Subjective tradition researchers may be divided as those

interested in the cognitive reactions to level of congruence

/ disparity evaluation, and those interested in emotional

reactions to disparity / congruence evaluation. Researchers

interested in cognitive evaluation reaction are referred to

as the subjective life satisfaction school. Emotional

reaction researchers are those interested in happiness or

positive and negative affect. Measures used in mental

health, such as measures of self-esteem or depression are

often from the subjective emotional reaction school. A

criticism of the subjective emotional reaction

conceptualization is that it lacks the reflective component,

seen as critical by some rehabilitation QOL researchers, to

most current subjective QOL conceptualizations (Dijkers,

1997; Frisch, 1998; Schaalock). The cognitive evaluation

school may be broken down into those conceptualizing

subjective QOL as being global, using one measure inclusive

of all life domains, and those who break subjective QOL down

into various domains or facets.

17

There are three major criticisms with use of

psychological, or subjective evaluation indicators. First,

the social desirability response bias. Social desirability

has been shown to influence self-report responses. Second,

reports of feeling states, using methods such as Likert-like

scales, are in themselves idiosyncratic. For example, people

attach different meanings to the likert-like scale response

“somewhat satisfied”. And third, psychological, or social

indicators may not reflect the realities of the individual’s

environmental conditions. This leads to the need to

incorporate both psychological and objective indicators in

order to assess the individual’s complete QOL, thus

producing a QOL profile (Cummins, McCabe, & Romeo, 1997; Day

& Janekey, 1996).

Defining the Phrase QOL

Quality: [<Latin. quails, of what kind ] adj. The degree

of excellence of a thing (Webster’s New World Dictoinary,

1982, p 370).

Life: [Old English. Lif] n. One’s manner of living

(Webster’s New World Dictionary, 1982, p. 264).

18

“Quality (adj) of Life (n)”: The degree of excellence of

…One’s manner of living.

“Quality [<Latin>] of Life (n)”; Of what kind (is)…One’s

manner of living.

From the above definitions one can begin to develop an

understanding of the crux of QOL research. In some varied

form, all QOL research seeks to describe the degree of

excellence of some part of, or all of, someone’s, or some

group of people’s, manner of living. Some QOL measurement

may be better understood using the Latin translation of

quality, of what kind. QOL studies, especially those interested

in subjective phenomena, may be concerned with a less

precise measurement that seeks to describe what kind of

manner of living is being experienced.

Fields as diverse as civil engineering and

rehabilitation counseling use the phrase QOL. QOL

operational definitions and measures are usually narrowed,

or restricted, measuring the quality of only that part of

the individual’s life the researcher deems of importance,

19

according to their specific use. Early conceptualizations

of QOL and its measurement “were formulated by people who

perceived the concept from a restricted spectrum and defined

it such that it lacked totality” (Day & Jankey, 1996 p45).

Studies have used the phrase QOL, regardless of the actual

life areas measured or method of measurement utilized;

creating confusion.

The researcher’s perspective and specific interest in

QOL determine the unit of measure, indicators of interest,

and method of data collection for their studies.

Three factors that broadly classify QOL Research:

1. Level of measurement (group or individual )

2. Indicators of interest (objective, subjectively

perceived, both)

3. Method of measurement (professional observation, self-

report).

There are sufficient labels to discriminate between the

various areas of QOL under investigation. For example, the

geographer has an interest in social indicators QOL, measuring

20

group QOL, using objective indicators compiled by

observation; the medical researcher studies professionally

rated objective indicators of the individual. For this

study, the level of measure will be individual, the

subscales consist of both objective and subjective

indicators, and the method of measurement is self-report.

QOL Research in Rehabilitation

Pinpointing when QOL became an important consideration

in rehabilitation is difficult. Early rehabilitation efforts

aimed at returning individuals with disabilities to work.

The logical primary outcome measure was employment. By the

1970s use of the uni-dimensional measure employment ,as an

outcome measure for multi-dimensional rehabilitation

services, was being questioned (Bolton, 1978). By the 1980s

QOL research studies began to establish an understanding of

critical requirements of QOL specific to persons with

disabilities, and a number of articles on QOL as a viable

21

outcome in rehabilitation appeared in the rehabilitation

literature (Anderson, 1982;; Dijkers, 1996, 2001; Fabian,

1990). More recently it has been suggested that QOL be used

as a primary measure of rehabilitation planning and outcome,

especially for people with SCI (Dennis, Williams,

Giangreco, Cloninger, 1993; Dijkers, 1996, 2001; Fuher,

1996, 2001; Kemp & Ettleson, 2001; McAweeney, Forchheimer,

Tate, 1996; Roessler, 1990).

Early rehabilitation QOL research studies focused on

differences in QOL between people with and without

disabilities, often reporting conflicting results (Dijkers,

1996; Fabian, 1990; Krause, 1992). Next, rehabilitation QOL

research began to focus on QOL differences within

populations of people with disabilities. More recently

within the field of rehabilitation, interest in QOL research

has focused on developing an understanding of the

relationships between rehabilitation and QOL in order to

better use QOL in planning, delivery, and evaluation.

22

Conceptual Rehabilitation QOL Model

Evolving values within rehabilitation, manifested in

such words as empowerment, choice, independence, self-

determination, mainstreaming, normalization, least

restrictive environment, and community have been a

motivating force behind the use of QOL in rehabilitation

(Curtis, 1998). In keeping with these values, QOL as it

relates to rehabilitation (rehabilitation QOL) is self-

reported, reflecting the idiosyncratic, subjective

perceptions and evaluations of the individual. In

rehabilitation QOL there is an assumption that basic

determinants of QOL are the same for both disabled and non-

disabled persons. Therefore all domains or facets of

rehabilitation QOL have the potential to be as equally

important to a person with a disability as to a non-disabled

person. The primary emphasis in rehabilitation QOL

measurement is on the self-reported, subjective perspective.

23

Objective indicators of QOL may also play a role in

developing a global rehabilitation QOL profile. Observed,

objective rehabilitation QOL indicators are useful as a

check against internal, self-reported subjective

rehabilitation QOL indicators. Incongruence between the

objective and subjective indicators may be addressed

through rehabilitation services or interventions, however,

thus far studies have not firmly established the

relationships of self-reported QOL, severity of disability,

and the various facets of life under consideration

(Veenhoven, 2003).

RATIONALE

Interest in the construct QOL has permeated the

rehabilitation literature in recent years. Goode (1990),

referring to the popularity of rehabilitation QOL wrote that

the phrase “has achieved national and international

notoriety” (pg. 41). QOL has become a pervasive phrase in

most rehabilitation professional jargon. In addition to

traditional rehabilitation objectives, such as medical

stabilization, functional independence, and employment, QOL

24

is now considered a desired outcome of rehabilitation.

Unfortunately, the popularity of QOL has not been paralleled

by efforts to create a consensus understanding of what QOL

means and how it is measured (Boswell, Dawson, & Heininger,

1998. Campbell, Converse, & Rodgers, 1976; Fabian, 1991.

Pain, Dunn, Anderson, Darrah, & Kratochvil, 1998).

Investigating QOL for persons with spinal cord injuries

(SCI) has become especially important ( Dijkers, 1996, 2001;

Fuher, 1996, 2001; Kemp & Ettleson, 2001; Kemp, Krause, &

Stuart, 1999; Krause 1992, 1997a, 1997b, 1998; Marini,

Rogers, Slate, & Vines 1995). Earliest SCI rehabilitation

concerns focused on medical stabilization. After medical

advances made medical stabilization and survival more common

for persons with SCI, rehabilitation emphasis shifted to

psychosocial adjustment and functional independence. With

health and independence issues better resolved, life

expectancy of persons with SCI has risen dramatically (Kemp

& Ettelson, 2001). As a result, currently the three primary

goals of SCI rehabilitation are health, function, and QOL

(Kemp & Ettleson, 2001; Sasma, Patrck, & Feussner, 1993).

25

Studying people with long-term SCI is also important as

there will be an increasing number of seniors living with

SCI for the foreseeable future. Life expectancy for a person

with a SCI has increased from 1 – 10 years post injury in

the 1950s, to 85% – 90% of the non-disabled population by

the mid 1990s (Kemp & Ettleson, 2001). There are 10,000 new

people with SCI each year; and a “cure” remains somewhere in

the future (Kiser, 2000). Research on aging with SCI has

only recently begun, and there have been but a few studies

on the QOL of elderly persons with SCI (Putzke, Barrett, &

Devivo, 2003). Defining, understanding, and measuring QOL

for persons with SCI is therefore of the utmost importance (

Dijkers, 1996, 1997a; Fuher, 1996, 2001; Kemp & Ettleson,

2001; Kemp & Krause, 1999; Krause 1992, 1997a, 1997b, 1998a

1998b; Marini et. al, 1995; Sasma et. al, 1993).

Purpose of the Study

The purpose of this study was to conceptualize and

measure key facets of Quality of Life (QOL) as reported by

Arkansas Spinal Cord Commission (ASCC) clients with spinal

cord injuries (SCI), twenty-five years after clients’ first

26

contact with Arkansas Rehabilitation Services (ARS), and

consequent participation in earlier Arkansas Rehabilitation

Research and Training Center (ARRTC) studies (Cook, 1978).

This was accomplished by: developing an instrument, the

Rehabilitation QOL Inventory (RQOLI), measuring six facets

of QOL relevant to rehabilitation (rehabilitation QOL);

cross referencing files from the original ARRTC study with

Arkansas Spinal Cord Commission (ASCC) (branch of ARS

specifically serving clients with SCI) data bases to

determine surviving ARS clients with SCI, and obtaining

current addresses for those clients; mailing the RQOLI

instrument to those clients using mail survey methods;

compiling the data obtained from the mail survey for

analysis.

The RQOLI instrument consists of six subscales, each

measuring a facet of rehabilitation QOL. These subscales

are: independent activities of daily living (IADL)

(Dijkers, 1999; Harrison, Garnett, & Watson, 1981);

activities of daily living (ADL) (Cella, 1995; Cook, 1978;

Cook, Bolton, & Taperek, 1980; Cook & Roessler, 1977);

27

emotional well being (Cella, 1995; Cook, 1978; Faschingbauer

& Newmark,1978); motivation (Cook, 1978; Gallagher-Lepak,

1996); personal sense of empowerment (Bolton & Brookings,

1999; Bolton & Brookings, 2000), and self reported life

satisfaction (Dijkers, 1999; Flanagan, 1978, 1982).

The six facets of rehabilitation QOL, currently

identified in the SCI rehabilitation research literature,

represented in the subscales are: activities of daily living

(ADL), a self-report of perceived help needed to perform

routine activities of everyday life, tapping perceived

function; independent activities of daily living (IADL), a

self-report of perceived time spent in social and

avocational activities, tapping perceived social interaction

and level of productive activity; emotional well-being, a

self-report tapping psychopathology; psychological well-

being, a self-report tapping level of psychological need

fulfillment, or level of psychological well-being ; sense of

empowerment, a self-report tapping level of personal sense

of empowerment and self-direction; self-reported life

importance / satisfaction, a self-report of the perceived

28

importance and level of satisfaction regarding six major

life areas known to affect QOL. There is also a final Likert

–like scale rating of overall QOL .

While each facet measured produces its own subscale

score, with the life satisfaction scale producing importance

and satisfaction scales, these subscale scores produce a QOL

profile, as opposed to a QOL global score. This is a causal

model, inferring perceived effects upon QOL, as opposed to

additive models, where there is an assumption that subscales

added produce a global QOL score.

Research Questions and Objectives

Completing the following objectives addressed the

following research questions and achieved the purpose of the

study:

1. drawing on the rehabilitation literature, develop an

instrument measuring key facets of QOL for persons with

SCI;

2. utilize the instrument via mail survey, compile and

prepare data for statistical analysis;

29

3. determine the reliability of the six subscales

measuring the six facets;

4. determine the relationships between the six facets;

5. describe the ARS SCI clients’ rehabilitation QOL 25

years after SCI;

6. determine whether QOL varies by age, gender, level of

injury, marital status, or living arrangements.

The study addressed the following research questions:

1. Are the scales measuring the six facets of QOL

reliable (internally consistent)?

2. What are the relationships between the six facets of

QOL under study?

3. How do former vocational rehabilitation spinal cord

injured clients describe their QOL twenty-five

years after first service?

4. Does QOL vary by age, gender, level of injury,

marital status, or living arrangements?

Why This Study Is Important

30

Results from this study described the QOL of a group of

persons with SCI, at least 25 years post-injury. QOL and

aging with SCI is of current importance and interest within

the field of rehabilitation, due in part to the growing

number of people with SCI living into old age; and, in part

due to continually evolving values within the field. There

have been few studies examining QOL of aging persons with

long-term SCI (Charlifue & Gerhart, 2004; Putzke, Barrett, &

Devivo, 2003).

There are few studies providing data on multiple

facets of QOL that allow for the study of the facet

relationships (Dijkers, 2002). The correlation matrix on

the six facets of rehabilitation QOL under study helps build

the small, conflicting, but developing body of empirical

data on the relationships between facets of rehabilitation

QOL. The developing knowledge base on rehabilitation QOL and

SCI enables rehabilitation professionals to better

understand what affects rehabilitation QOL for a person with

a severe, physical disability such as SCI. Examining the

measurement characteristics of the RQOLI and its subscales

31

furthers the knowledge base on how to best measure

rehabilitation QOL.

Relevance to Public Policy

The field of civilian non-medical rehabilitation in the

U.S. has largely been shaped by federal legislation, which

is in turn influenced by societal values. The 1973

Rehabilitation Act (P.L. 93-112), 1986 Rehabilitation Act

Amendments (P.L. 99-506), Individuals with Disabilities

Education Act (IDEA) (P.L. 101-476), and the Americans with

Disabilities Act (ADA) (P.L. 101-336), are recent examples

of the reciprocal relationship between societal values and

federal legislation affecting rehabilitation. The underlying

values acting as a catalyst for change are: equality,

individualism, self-determination, and freedom of choice

(Goode, 1992). Rehabilitation QOL encompasses all of these

values. Using QOL measurement in rehabilitation emphasizes

the importance of including the clients’ perspective and

providing for individualism, self-determination, and freedom

32

of choice in the rehabilitation process, as recent

legislative changes have required.

Aside from satisfying specific legislative mandates,

the field of rehabilitation must continue to incorporate

evolving social values, such as those represented by QOL, in

the planning, delivery, and evaluation of its services in

order to continue to have social value and support

(Buchannon, Woodruff, Gates, McKinley, Ellis, & Levesque,

1998). Rehabilitation QOL provides a measurement for people

with SCI, useful for evaluation and planning that emphasizes

the social values of equality, individualism, self-

determination, and freedom of choice. Continuing research

into rehabilitation QOL will clarify the term and further

develop its utility for the planning and evaluation of

rehabilitation services.

Chapter 2

Review Of Literature

Use of the phrase Quality of Life (QOL) is widespread

throughout rehabilitation, yet its meaning remains so

33

ambiguous that Wolfensberger (1996),, one of the fathers of

the normalization movement in the 1960s , and a student of

disability language and word usage, refers to QOL as a “code

word” (Wolfensberger, 1996pg. 285)). Code word, as

Wolfensberger uses employs the term code word to describe ,

refers to a word or phrase many people use but define in

their own subjective way; often projecting unintended

meaning or symbolism into the term. Wolfensberger had

anecdotal experience with normalization, a symbolic term he

helped coin and popularize in the 1960s. When normalization,

in Wolfensberger’s perspective, became a code word, it lost

its intended meaning and symbolism, and he therefore

abandoned the term, replacing it with the more narrowly

defined, and much less used term, social role valorization.

Code words like QOL sound meaningful and important, as

Powell (1997) has observed, QOL “is ideally suited to give

its users a warm, comfy feeling that they are onto something

important and that at last this meaningful entity is one

that all cognoscenti can share” (p.45). Code words also

have a great deal of attraction as outcomes or goals, as

34

code words can mean something different to everyone

involved. Code words are of little use when

communicationclarity is of importance, however,, however,

such as in a rehabilitation relationship.

Why then the ongoing call for use of QOL in

rehabilitation when it continues to be reported as an

ambiguous term; especially for its use as a measure.

Use of QOL as an Additional Measure in Rehabilitation

There has been a longstanding call for additional

outcome measures, such as QOL, in rehabilitation (Bolton,

1974, 1986, 1986a, 1987, 2000; Fabian, 1990; Gibbs, 1990;

Livneh, 1988; Walls & Tseng, 1987; Walls, 2001). From its

earliest beginnings the primary, stated, goal of the federal

vocational rehabilitation (VR) program has been to return

people with disabilities to gainful work. As Bolton (1986)

explained, the underlying assumption to the VR philosophy

(of return to gainful work) is that in the U.S. “successful

vocational adjustment is fundamental to satisfactory

adjustment in other areas of life” (1986a, pg. 59).

35

Therefore economically based, return to work indicators,

have to date, been the standard for VR outcome measures

(Bolton, 1974, 1979, 1986, 1987, 2000. Fabian, 1990. Gibbs,

1990. Livneh, 1988. Walls & Tseng, 1987. Walls, 2001).

VR clients in the early years of the program were

typically workers who had experienced injuries, either on or

off the job (Gibbs, 1990). Such individuals typically had

work and earnings histories. To establish the effectiveness

of VR services it was, therefore, plausible to simply look

at the injured worker’s post VR services income as opposed

to their pre-injury income. Eventually, for ease of

measurement, an assumption was developed that the

attainment and maintenance of a job for 90 days after

receiving services indicated a “return to work”, or a “case

closed, rehabilitated”. The VR system developed a 2-digit

status code system in order to track cases through the

system from referral to closure (attach appendix showing

status codes). “Closed rehabilitated” was assigned status

“26”. Thus, the 26 Closure – closed rehabilitated - became

the standard for a successful VR outcome, and likewise the

36

26 closure became the standard metric for VR outcome

measure.

Over the many years since its inception, however, the

clients and services of VR have become much more diverse

(Cella, 2001). VR was directed to deliver services through

“order of selection” mandates, seeking to insure that the

most severe clients would be served. Clients no longer have

to prove that there is a reasonable assumption that they can

even obtain employment after receipt of services. It has

become expected that VR should serve clients with an array

of disabilities including mental retardation,

developmental disabilities, or persons with severe mental

illness; whose service outcome expectations are vastly

different from those VR initially served (Chubon, Clayton, &

Vandergriff, 1995). Many of the clients that began coming to

VR had no previous work history; and work supports that

required lifelong, ongoing support of the client were

introduced (Wehman & Kregel 1995; Wehman, & Parent, 1992).

Changes in the expectations placed on VR are primarily

due to changes in public values, which are manifested in

37

Rehabilitation Services Administration (RSA) mandates as a

result of changes in federal legislation. Primary examples

of such legislated changes are the Rehabilitation Act of

1973, the Americans with Disabilities Act of 1992 (ADA), and

most recently the Workforce Investment Act of 1998 (Rubin

and Roessler, 1995. Walls, 2001). As previously mentioned

the order of selection mandates and disability rights

legislation began to bring into practice what had, to some

degree, been a philosophical perspective for many years. RS

had been conscious of the much broader needs of its clients

than simply returning them to work since at least the 1950s

(Bolton, 1974). It took the legislating of new perspectives

such as those beginning with the Rehabilitation Act of 1973

to begin to actually implement the changes that have pushed

a paradigm shift.

Further, the order of selection mandates along with the

influence of civil rights changes, are the result of a new

paradigm in the field of rehabilitation, rendering the old

38

outcome status of “closed rehabilitated” lacking or even

useless in many cases. Thus, the use of economically based

OMs, such as rehabilitated – gainfully employed (or even

working in workshops), has become increasingly problematic

(Bolton, 1974, 1979, 1986, 1987, 2000. Gibbs, 1990. Krause,

1992. Livneh, 1988. Walls & Tseng, 1987. Walls, 2001) .

These changes in public values and the resulting

federal legislation and RSA mandates, have brought about a

paradigm shift in VR (Curtis, 1998; Zimmerman, 1998). This

paradigm shift has created far broader expectations of VR

than those expectations held with the early “return to work”

perspective. However, the standard OM has not changed to

consider these broader expectations. Therefore VR counselors

must deal with a system and clients that expect a broader

range of services, but at the same time face job evaluations

that are narrowly focused on the standard status 26

closures. With little credit for services provided that seek

to enhance the life satisfaction of clients outside of the

return to work focus, and expectations that VR efforts will

39

see a continuos volume of 26 closures, the net effect is to

constrict VR efforts.

Due to these changes in outcome expectations of VR,

the standard outcome measure for VR outcome evaluation needs

to change. The values which are now highly valued in VR and

which are not necessarily measured by economic, return to

work measurements, can be measured utilizing a LS outcome

measurement.

This study determined key facets of QOL put forth in

the rehabilitation, SCI, and QOL literature. An instrument,

the RQOLI, was developed to measure key facets of QOL

relevant to persons with SCI. The instrument developed for

measuring these facets of QOL was administered to a group of

persons with SCI in Arkansas who had previously participated

in an ARRTC study 25 years ago. The reliability of the

scales and the relationships between the facets of QOL under

investigation was then the primary focus of study.

40

Fabian, through a review of literature on rehabilitation

QOL research, identified the three most common approaches to

measuring rehabilitation QOL:

QOL measuring individual life satisfaction

across multiple life domains;

QOL measuring individual’s adaptive functioning

and environmental mastery;

QOL measuring changes among groups of people

used as a rehabilitation services outcome

measure (Fabian, 1991).

Life satisfaction measures and adaptive functioning

measures are used together as a conceptual and operational

model of rehabilitation QOL (Fabian, 1990; Rubin, Chan, &

Thomas, 2003). The life satisfaction conceptual model views

QOL as a composite of individual characteristics, objective

conditions and the subjective evaluation of these

conditions. The adaptive functioning conceptual model is

based on the notion that QOL is enhanced when individuals

increase their ability to master their environment (Fabian,

1990; Rubin et. al, 2003; Stineman, 2000).

41

Life satisfaction measures generally measure global

life satisfaction and specific facet satisfaction.

Measurement instruments developed for this purpose are

multidimensional and use individual assessment of their

various life domains. Assessments use scales that generally

move from best to worst and reflect the individual’s

evaluation of life satisfaction on the various life domains.

There are two major assumptions associated with the use of

such scales in rehabilitation (Fabian, 19991; Rubin, Chan, &

Thomas 2003). The first, that individuals are able to

recognize and report satisfaction across the various life

domains. This assumption often holds true for some people

with disabilities, such as SCI. However, for people with

some disabilities such as mental retardation, such self-

reports may be impossible or contraindicated due to social

desirability or response acquiescence problems. The second

assumption is that such instruments are reliable, such

reliability being dependent upon the individual having

sufficient previous life experiences so current life

conditions can be compared with some internally or

42

externally derived standard. A possible problem with this

assumption is that individuals may report high satisfaction

due to a lack of an external basis for comparison (Fabian,

1991; Schaalock, 1991).

The primary underlying assumption for the adaptive

functioning conceptual model is that QOL is a concept of the

individual interacting with their environment (Fabian,

1990). This conceptual approach has been largely developed

and used by those providing rehabilitation intervention

services, particularly medical interventions. The underlying

assumption is that the higher individuals are functioning

and the more individuals are integrated into their

environment, the higher their QOL. The adaptive functioning

model uses objective indicators observed by a third party

for measurement. Observers, often professionals such as

physicians, physical therapist or counselors, rate level of

functioning compared to a normative level. Adaptive

functioning areas of interest include social functioning as

well as various types of physical functioning. (Fabian,

1991).

43

Fabian (1990, 1991) proposes a comprehensive approach

comprised of both objective and subjective indicators for

rehabilitation QOL assessment. Fabian’s conceptual model of

QOL for use in rehabilitation combines subjective reports

of life satisfaction with measures of adaptive functioning

Rehabilitation QOL researchers, in keeping with the

values of choice and empowerment evolving within

rehabilitation, have used several methods to study how

persons with disabilities define their own QOL (Boswell,

Dawson, & Heininger, 1998; Dijkers, Edgerton, 1991;).

Dijkers (2001) used a nonprobability, quota sample, n=40, in

a qualitative study of how persons with SCI understand and

assess QOL. Qualitative analysis was used to analyze

structured interviews of 45 minutes to two and one half

hours. Interviews were structured to elicit participant’s

understanding and assessment of QOL. Individual self-ratings

of QOL were obtained using the participant’s own reporting

method. Self reporting methods included the volunteering of

a numerical scale rating, such as on a scale from one to

ten, to the use of descriptive terms conveying emotions or

44

judgments. Participant’s qualitative QOL ratings were

transposed to a seven point Likert – like scale. While

participants had difficulty defining QOL, some stating that

the concept was vague, several perceptions of QOL were

numerous. Common found perceptions are that QOL is

“subjective, unique, dynamic (changing from day to day), and

elastic (expanding and contracting as expectations and

circumstances changed) (Dugan & Dijkers, 2001 p11). Most

participants identified indicators or domains (facets) that

were important when assessing an individual’s QOL. Dijkers

classified these indicators or domains into two broad

dimensions: objective indicators (finances, socially

productive roles, health, physical independence, social

independence, social networks, social support), and

subjective indicators (happiness, peace of mind, self-

esteem, resilience, spiritual beliefs and values).

There is still a great deal of research needed to

develop a comprehensive conceptualization of QOL that would

allow for feasible measurement, yet remain sensitive to

45

slight changes, especially for persons with disabilities

such as SCI (Dijkers, 1997; 1999; 2001).

Components and Facets of Rehabilitation QOL

Flanagan, in a national study collected critical

incident information related to subjective QOL (Flanagan,

1978). From the 3000 people responding “about 6,500 critical

incidents were collected, each reporting a time when

something was actually observed to have a significant effect

either positively or negatively on the overall QOL” of a

person (Flanagan, 1982, p138). Utilizing an inductive

process, grouping by similar statements, the 6,500 critical

incidents were sorted into 15 components, or those areas of

life where “something was actually observed to have a

significant effect either positively or negatively on the

overall QOL” of a person (Flanagan, 1982, p138). Flanagan

found that these QOL components, “based on the experiences

of this varied group of people” (Flanagan, 1978, p139) made

up 5 main facets of QOL. These components and facets are

shown in Table 3.1.

46

Flanagan never developed an instrument based upon his

findings, nor did he attach his name to the instruments that

researchers later developed based upon Flanagan’s approach

to measuring QOL. There are several versions of Flanagan

QOL measurement instruments in use, as well as various

methods for scoring the importance and satisfaction scales

often used in Flanagan QOL scales (Dijkers, 2001; Stineman,

M., 2001).

These facets and categories of QOL identified by

Flanagan (1978, 1982) were the basis of the early subjective

QOL research, and are therefore inherent in most

rehabilitation QOL models developed to date (Dijkers, 1996;

McDaniel & Bach, 1994; Padilla, Grant, & Ferrell, 1992).

Table 3.1

Flanagan Facets and Categories of QOL

Physical Health and material well-being

47

A. Material comforts

B. Health and personal safety

Relations with other people

C. Relationships with relatives

D. Having and rearing children

E. Close relationship with spouse or member of

opposite sex

F. Close friends – sharing views, interest,

activities

Social, community, and civic activities

G. Helping and encouraging others

H. Participating in governmental and local affairs

Personal development and fulfillment

I. Learning, attending school, improving

understanding

J. Understanding yourself and knowing your assets

and limitations

K. Work that is interesting, rewarding, worthwhile

L. Expressing yourself in a creative manner

Recreation

48

M. Socializing with others

N. Reading, listening to music, or watching

sports, other entertainment

O. Participation in active recreation

Flanagan provided specific instructions for

determining those facets of QOL that might be more important

to a person with a disability than to the non-disabled

public. Flanagan suggested use of the critical incident

method, where a sample of persons with disabilities would be

interviewed to obtain their observations on incidents where

“something was actually observed to have a significant

effect either positively or negatively on the overall QOL”

of a person with a disability (Flanagan, 1982, p138).

Numerous studies have recently used primarily qualitative

methods to obtain information as to what adds or detracts

from the life quality of persons with disabilities. These

studies have yielded no new facets of QOL useful for

measurement, however they have emphasized how various

disabilities may have specific perspectives that are common

to many people with that disability.

49

Problem

There is agreement regarding the basic components of

rehabilitation QOL, especially for people with SCI (Bishop

& Feist-Price, 2000; Boswell et. al, 1998; Dijkers, 2000;

Fabian, 1991; Pain et. al, 1998. Renwick, Brown, & Nagler,

1996). Unfortunately proposed models have become almost as

numerous as investigators of the subject, creating

widespread ambiguity and inconsistency in QOL measurement

(Pain et. al, 1998). For example, Hughes, Hwang, Kim,

Eisenman & Killian (1995) identified 1,243 different

measures of QOL over 14 years of published literature. The

vast number of these QOL measures have sought to develop

operational definitions and measurement approaches specific

to a unique setting or situation (Bergner, 1989). Only a

relative fraction of these studies have focused on people

with severe disabilities such as SCI. None have addressed

comprehensive measurement of QOL of people with long term

SCI (Krause, 1990; Krause, 1992). Consequently no best

practice model linking QOL measurement and SCI has

evolved. The purpose of this study, therefore, is, to

50

conceptualize and measure key facets of QOL as reported by

ASCC clients with SCI, 25 years after first participation in

an ARRTC study.

CHAPTER 3III

Methodology

This chapter describes the methods and procedures used

in addressing the objectives of the study. Those objectives

include: operationally defining non-medical rehabilitation

quality of life (RQOL) and its major facets; developing an

instrument, the Rehabilitation QOL Inventory (RQOLI),

composed of sub-scales measuring facets of RQOL; cross

referencing files from the original Arkansas Rehabilitation

Research and Training Center (ARRTC) study with Arkansas

Spinal Cord Commission (ASCC) data bases to determine

surviving clients with SCI and obtaining current addresses

for those clients; administering the RQOLI instrument via

mail survey and compiling and analyzing data obtained from

the survey.

51

SAMPLEParticipants

Participants in this study were persons who are

SCIspinal cord injured (SCI), are, are clients of the

Arkansas Spinal Cord Commission (ASCC) (Vines, 1999) or are

listed with its database, and were previously served by

Arkansas Rehabilitation Services (ARS) between 1975 and

1978. The Arkansas Division of Rehabilitation Services

initiated a Rehabilitation Services Innovation and Expansion

Project in 1975 to provide vocational rehabilitation

services to people with SCI in Arkansas (Cook & Roessler,

19780). A primary objective of that study, in conjunction

with the Arkansas Rehabilitation Research and Training

Center (ARRTC), iwas that all persons with SCI served, 1975

- 1978 would be monitored and studied as to project process

and outcome. The initial research population consisted of

the 297 clients with SCI ARS served July 1, 1975 – June 30,

1978. ARRTC, created and maintained a file in order to

monitor Eeach of these 297 subjects ARS served between 1975

and 1978 people under study. Files contain various levels of

information on each participant, determined by level of

52

study participation. Data gathering instruments used in the

files include the Initial Questionnaire, a structured

interview form completed by rehabilitation counselors on all

participants upon entry into the program. The Initial

Questionnaire provided demographic information as well as

questions on “various social, community and medical factors

specific to SCI” (Cook & Bolton, 1980, p16); also included

were the: Follow-up Questionnaire, used in an earlier ARRTC

follow-up study completed by some participants; Human

Service Scale (HSS), self-reported psychological needs

fulfillment instrument completed by some participants (Cook

& Roessler, 1977); Mini-Mult, a measure of psychopathology,

(Cook & Roessler, 1977); and the Life Ladder, “an eleven

point self-anchoring scale thought to measure a person’s

optimism for the future” (Cook & Roessler, 1977, p9). All

files contained Initial Questionnaires. completed a survey

questionnaire as part of the earlier ARRTC project. These

Initial Questionnaires ARRTC questionnaires contain

identifyingvarious identifying information such as: name,

age, social security number, and address (see appendix 3.1

53

3.1– include sanitized face sheet). Information from these

Initial Questionnaires records was cross-referenced with the

current ASCC database to obtain a list of all surviving

eligible ARRTC study participants and their current

addresses. This provided a list of 139 subjects people

meeting study requirementswith SCI that had first

participated in the ARRTC study 25 years ago.. Of these 139

people, ten had requested no further contact by ASCC and

were therefore deleted from the list. for contact. This left

129 people with SCI that had first participated subjects

meeting the criteria to be in an ARRTC study 25 years ago,

andpossible study participants defined the sample for this

study.

Instrumentation AND DATA SOURCES

For purposes of this study rehabilitation quality of

life (RQOL) will beas measured using the Rehabilitation

54

Quality of Life Inventory ( RQOLI)Self Report Life

Satisfaction instrument (SRLS) which consist of 90 self-

report items (see appendix 1). The RQOLI SRLS consist of six

subscales ranging from seven to twenty-six items, designed

to measure the six facets of RQOL under investigation;, and

two demographic items of interest. in rehabilitation. Stable

Ddemographic information such as date of birth, level of

injury, and gender, is available from the earlier ARRTC

files and the Arkansas Spinal Cord Commission (ASCC)

database. Current marital status and living arrangements

were demographics otherwise unavailable and were therefore

included in the instrument.

Rehabilitation Quality of Life Definition

Evolving vValues within rehabilitation counseling,

manifested in such words such as empowerment, choice,

independence, and self-determination, are a motivating force

behind the use of QOL in rehabilitation counseling. In

keeping with these values, QOL as it relates to

rehabilitation counseling (RQOL), and as it is therefore

used in this study, is self-reported, reflecting the

55

idiosyncratic, subjective perceptions and evaluations of

each individual’s life. life.

Therelife. There are multiple, measurable facets of

RQOL, including two that may or may not be closely related,

but require further clarification; emotional well-being

(EWB) and psychological well-being (PWB). EWB refers to lack

of psychopathology, while PWB refers to level of

psychological needs met. Personal sense of empowerment;

activities of daily living, subjective life satisfaction,

and independent activities of daily living are the other

major facets of RQOL. The measurement of these facets should

provide a holistic view of the individual. While each facet

measured produces its own subscale score, these subscale

scores produce a QOL profile, as opposed to a QOL global score.

This is a causal model, inferring perceived facet effects

upon RQOL, as opposed to additive models, where there is an

assumption that subscales added produce a meaningful, global

QOL score.

Item Development and Selection

56

The item pool for development of an instrument that

would measure six facets multiple facets of RQOL was

comprised of items from previously used ARRTC instruments

(Cook & Bolton, 1980; Cook & Roessler, 1977), the Personal

Opinions Questionnaire (Bolton & Brookings, 1998), and

Flanagan’s Life Satisfaction Scale (Flanagan, 1978, 1982).

Items from the item pool were selected by consensus of a

three judgethree-judge panel of rehabilitation

professionals,. iIn keeping with the operational definition

of RQOL developed from the literature for use in this study,

items were selected to reflect facets of RQOL under study;

psychological well-being, emotional well-being, social

participation ,participation, personal sense of empowerment,

life satisfaction, and activities of daily living. Items

were deleted from the item pool that were judged out-dated

or if the item contained offensive language; therefore,

items selected were non-offensive and contain disability

appropriate language.

Facet Subscales

57

The six sub-subscales measuring the six facets of RQOL

consisted of: independent activities of daily living

(living (IADL) (Dijkers, 1999; Harrison, Garnett, & Watson,

1981; Encyclopedia of Disability and Rehabilitation,

1995) ,), activities of daily living (ADL) (Cella, 1995;

Cook, 1978.; Cook, Bolton, & Taperek,1980, 1980; Cook &

Roessler, 1977; Fuhrer, 1994; Muldoon, Barger, Flory, &

Manuck, 1998 )1998), emotional well being (Cella, 1995;

Cook, 1978; Faschingbauer & Newmark, 1978),

motivationpsychological well-being (PWB) (Cook, 1978;

Gallagher-Lepak, 1996), personal sense of empowerment

(Bolton & Brookings, 1999), and Flanagan life

satisfactionquality of life (Dijkers, 1999; Flanagan, 1978,

1982).

ADL and IADL sub-scale items were selected and

reproduced verbatim from the Initial Questionnaire

instrument completed by all survey participants as part of

the earlier ARRTC study (see Appendix 1). Items contained in

the original questionnaire “were adapted or modified from

several sources including various activities of daily living

58

scales” (Cook, Bolton, & Taperek, 1980, p16). ADL items

concern restrictions due to SCI the individual encounters in

routine daily activities such as cooking and eating, washing

and bathing, transferring from bed or wheelchair, or

cleaning and doing laundry (see Appendix 1, items 3 – 13).

ADL items are scored as to help needed to perform these

activities; with the greater the amount of help needed, the

lower the score. IADL items refer to participation in

broader activities such as social and avocational pursuits,

like visiting friends, reading, watching T.V., or attending

club or social meetings (see Appendix 1, items 48 – 55).

Items are scored as to approximate hours per week spent in

the various activities; the greater the amounts of active

time the higher the score. ADL and IADL scales are widely

used and accepted in rehabilitation, providing what some

have referred to as “traditional” rehabilitation

measurements (Cook, 1978. Cook, Bolton, & Taperek, 1980;

Cook & Roessler, 1977; Encyclopedia of Disability and

Rehabilitation, 1995). Typical reliability (test – retest)

59

of such instruments is reported to average above .80

(Bolton, 2001; Harrison, Garnett, & Watson, 1981).

Twelve items comprising the emotional well being sub-

scale were selected from the Mini-Mult, a short of the MMPI,

completed by some participants in the previous ARRTC study,

1975 - 1978. The Mini-Mult, developed by Kincannon in the

late 1960s as a measure of psychopathology (Kincannon,

1968), consists of 71 items representing all clinical and

validity scales of the MMPI except the Mf and Si scales

(Faschingbauer & Newmark, 1978). In the Mini-Mult Items are

reworded so that responses are yes or no. Reliability (test

- retest) is reported to be from .63 to .88, with a median

of .76 (Faschingbauer & Newmark, 1978).

Twenty-two items that make up the psychological well-

being (PWB) sub-scale are drawn from the Human Services

Scale (HSS). Developed for use in rehabilitation, the HSS

was a self-report questionnaire consisting of 80 items

measuring level of psychological need fulfillment (Cook,

1981; Reagles & Butler, 1976). Items are scored using five

Likert-like responses that range from worst to best, for

60

example: very dissatisfied, dissatisfied, satisfied but not

too satisfied, satisfied, or very satisfied. The HSS

purports to cover seven psychological needs: physiological,

emotional security, economic security, family, social,

economic self-esteem, vocational actualization. Reported

internal consistency reliability range from .69 to .97

(Reagles & Butler, 1976). Higher scale scores reflect higher

need fulfillment.

Twenty sixTwenty-six items came from the Personal

Opinions Questionnaire (POQ), a self-report instrument

designed by rehabilitation researchers to measure

intrapsychic processes related to a personal sense of

empowerment (Bolton & Brookings, 1999). The POQ consist of

64 items scored on four subscales: Personal Competence (PC),

Group Orientation (GO), Self-Determination (SD), and

Positive Identity (PI). In order to create an abbreviated

measure tapping personal sense of empowerment, the positive

identity (PI) and self-determination (SD) scales were used

in their entirety, and reproduced as they appear in the POQ.

Items are marked true or false. Median internal consistency

61

reliability is reported to be .85 (Bolton, 2001; Brookings &

Bolton, 1999).

Seven items were developed from Flanagan’s Life

Satisfaction scale (Flanagan, 1978, 1982). Flanagan’s Life

Satisfaction

Independent activities of daily living (IADL) and

activities of daily living (ADL) items were drawn verbatim

from questionnaire items completed by all study participants

1973 – 1975. Items contained in the original questionnaire

“were adapted or modified from several sources including

various activities of daily living scales” (Cook, Bolton, &

Taperek, 1980, p16). ADL items concern restrictions due to

SCI the individual encounters in routine daily activities

such as cooking and eating, washing and bathing,

transferring from bed or wheelchair, or cleaning and doing

laundry (see Appendix 1, items 3 – 13). The IADL items refer

to participation in broader activities such as social and

avocational pursuits, like visiting friends, reading,

watching T.V., or attending club or social meetings (see

Appendix 1, items 48 – 55). ADL and IADL scales are widely

62

used and accepted in rehabilitation (Cook, 1978. Cook,

Bolton, & Taperek,1980; Cook & Roessler, 1977; Encyclopedia

of Disability and Rehabilitation, 1995). Typical reliability

(test – retest) of such instruments is reported to average

in the high 80’s (Bolton, 2001; Harrison, Garnett, & Watson,

1981).

Emotional well being items were selected from the Mini-

Mult, a short form of the MMPI, completed by some of the

participants upon entry into the previous University of

Arkansas Department of Rehabilitation study, 1973 - 1975.

The Mini-Mult, developed by Kincannon in the late 1960s

(Kincannon, 1968), consistconsists of 71 items representing

all clinical and validity scales of the MMPI except the Mf

and Si scales (Faschingbauer & Newmark, 1978). In the Mini-

Mult Items are reworded so that responses are yes or no.

Reliability (test - retest) is reported to be from .63

to .88, with a median of .76 (Faschingbauer & Newmark,

1978).

Motivation scale items are drawn from the Human Services

Scale (HSS). Developed for use in rehabilitation, the HSS is

63

a self-report questionnaire consisting of 80 items (Cook,

1981.; Reagles & Butler, 1976 ). Items are scored on seven

psychological needs: physiological, emotional security,

economic security, family, social, economic self-esteem,

vocational actualization. Reported internal consistency

reliability range from .69 to .97. Higher scale scores

reflect higher need fulfillment.

Personal sense of empowerment items come from the Personal

Opinions Questionnaire (POQ) (Bolton & Brookings, 1999). The

POQ is a self-report instrument designed to measure

intrapsychic processes. Specifically the POQ consist of 64

items scored on four subscales: Personal Competence, Group

Orientation, Self-Determination, and Positive Identity.

Median internal consistency reliability is reported to

be .85 (Bolton, 2001; Brookings & Bolton, 1999).

Quality of lLife satisfaction (QOL) items are derived from

Flanagan’s components of Quality of life the findings of his

landmark quality of life study (Flanagan, 1978, 1982).

Flanagan’s QOL study collected more than 6,500 critical

incidents eaffecting QOL, from “nearly 3000 people of

64

various ages, races, and backgrounds, representing all

regions of the country (United States)” (Flanagan, 1978, p

138). Flanagan (1978) found that the major determinants of

QOL could be divided into five six categories: physical and

material well being; health and personal safety relations;

relations with other people; social, community, and civic

activities; personal development and fulfillment; and

recreation (Flanagan, 1982). He did not report reliability

data. There are mixed reports on whether Flanagan ever

constructed an actual instrument for measuring his QOL

scale, based upon findings from his critical incident

research. Respondents are asked to rate the importance and

leveland level of satisfaction for each category on a fivea

five point Likert-like scale, thus weighting responses of

life satisfaction according to the level of importance to

the respondent. Flanagan did not report reliability data,

as by best accounts Flanagan never utilized an actual

instrument based upon findings from his critical incident

research, for measuring life satisfaction.

65

Demographic information regarding current marital

status and living arrangements was collected using two

items. Finally, two open ended questions were added: all

things considered how are you getting along; and what can

you tell us about how we might improve services, or better

address the needs of persons with spinal cord disabilities.

In summary, the 90 item RQOLI consists of two

demographic questions, two open-ended questions and six sub-

scales: ADL, 11 items; IADL, 10 items, psychological well-

being, 22 items; emotional well-being, 12 items; personal

sense of empowerment, 26 items; and life satisfaction, 7

items. The draft instrument was administered to a small

number of subjects to insure instructions and items were

clearly understood. It was estimated that completion of the

instrument would take 30 minutes to under one hour.

Twenty one of the 90 items on the SRLS, two demographic and nineteen

ADL and IADL, were selected from the initial survey instrument completed by all

survey participants 20 – 25 years ago as part of an earlier Arkansas

Rehabilitation Research and Training Center (ARRTC) study. Twelve items came

66

from the Mini-Mult and 22 items came from the HSS. Both the Mini-Mult and HSS

had been used in the earlier study and were completed by a number of the study

participants. Twenty six items came from the POQ, positive identity and self-

determination scales. Seven items came from Flanagan’s five components of

quality of life. There are two open ended questions (i.e. all things considered

how are you getting along).

Items were selected, by consensus of a three judge panel of rehabilitation

professionals, to reflect the general themes of: physical well being, emotional

well being, financial security, social participation, personal sense of

empowerment and activities of daily living. Items selected are non-offensive and

contain disability appropriate language.

SAMPLE

Participants in this study arewere persons who are SCI, are clients

of the Arkansas Spinal Cord Commission (ASCC) or areor are listed with its

database, and were previously served by Arkansas Rehabilitation Services (ARS)

between 19735 and 19758. The Arkansas Division of Rehabilitation Services

initiated a Rehabilitation Services Innovation and Expansion Project in 1975 to

provide vocational rehabilitation services to people with SCI in Arkansas (Cook &

Roessler, 1980). A primary objective of that study is that all persons with SCI

served, 1975 - 1978 would be monitored and studied as to project process and

67

outcome. The initial research population consisted of the 297 clients served July

1, 1975 – June 30, 1978. Each of these subjects ARS served between 19735 and

19758 had completed acompleted a survey questionnaire as part of the earlier

ARRTC project. These questionnaires contain identifying information such as:

name, age, social security number, and address (see appendix 2 – include

sanitized face sheet). Information from these records werewas cross-referenced

with the current ASCC database to obtain a list of all eligible participants. This

provided a list of 139 subjects meeting study requirements. Of these 139 people,

ten had requested no further contact by ASCC and were therefore deleted from

the list for contact. This left 129 subjects meeting the criteria to be possible study

participants.

Moved to Results Sections…

(This provided a population of 139 subjects meeting study requirements. Of these 139 people, ten had requested no further contact by ASCC and were deleted from the sample. This left a population of 129 possible study participants.) FOLLOW – UP SURVEYProcedure

The survey will attempted to contact all 129 former ARS

SCI clients currently residing in Arkansas eligible for the

study. A modified Tailored Design Method (Dillman, 1978,

2000.; Reagles, 1979) will beas used. Specifically,

68

administration of the survey will consisted of four steps

steps:

1) 1) cCarefully constructing a personalized cover letter

from the Director of the ASCC requesting respondent

participation and outlining implied consent procedures

required by the University of Arkansas Institutional

Review Board, along with a letter from the researcher

explaining the voluntary nature of participation, an

explanation of the measures taken to protect

confidentiality, and a point of contact for questions,

comments, or problems;

2) 2) mMailing packets to all 129 possible participants

containing the ASCC cover letter, introduction letter,

the SRLS RQOLI instrument and a stamped self-addressed

return envelope;. rReturned mail and instruments,

identified by project number, were logged in daily.

3) 3) aAt the end of two weeks all non-respondents

willere be mailed a carefully constructed reminder

letter;

69

4) 4) aAfter four weeks all non-respondents willere be

mailed a new packet.

Survey packets were mailed to all possible participants. The packets contained a

cover letter from the Director of the ASCC, written on ASCC letterhead, requesting

participation in the project and explaining the importance of doing so. There was

an additional letter from the researchers explaining the voluntary nature of

participation along with an explanation of the measures taken to protect

confidentiality of individual’s responses. ,Return Rate

Forty-three instruments were received in the first two

weeks; 25 instruments were received prior to mailing a

second reminder notice; 22 instruments were received prior

to mailing replacement packets, and 19 instruments were

received after mailing replacement packets and prior to the

cutoff date. This was a total of 109 instruments, for a

return rate of 84.5% (see Table 3.2).

Table 3.2

Survey Return rates

____________________________________________________________

____________

70

Time Frame Instruments Returned

Prior to notice 1 43

Prior to notice 2 25

Prior to mailing packets 22

After mailing replacement

Packets to Cutoff date 19

Total 109

Return Rate as Percentage of 129 Instruments Mailed:

84.5 %

_______________________________________________________

_________________

The packets contained a copy of the LS 2000, the instrument used for gathering

data. Finally, the packets contained a stamped return envelope. Reminder notices

were mailed to non-respondents at two-week intervals. Two weeks after the

second reminder notice, a “replacement packet” was mailed to all remaining

non-respondents.

Data Analysis

The RQOLI instrumentRQOLI instrument used for data

collection consist ofhad 90 self-report items. All items

71

are self-reports. There arewere two demographic items,

marital and living status. Other demographic data such as

gender, medical status ,status, and age wereas obtained from

the files of the earlier ARRTCearlier ARRTC study or by

cross-referencing ASCC data bases. Two items are open ended

questions: All things considered, how are you getting along;

and, Whatwhat can you tell us about how we might improve

services, or better address the needs of persons with spinal

cord disabilities, were included?. Two items provide a

self-report of general physical and mental health on a four

pointfour-point scale, from excellent to poor.

Four research questions were posed:

1. Are each of the scales measuring the six facets of

QOL reliable (internally consistent)?

3. What are the relationships between the six facets of

QOL under study?

72

3. How do former vocational rehabilitation spinal cord

injured clients describe their QOL twenty-five

years after first service?

4. Does QOL vary by age, gender, level of injury,

marital status, or living arrangements?

The RQOLI is made up of six subscales, each measuring a

facet of QOL. These subscales,subscales measuring or

facets are: Limits in activities of daileydaily living

(ADL); emotional well being (being (Mini-mult items);

Motivationpsychological well-being (HSS items); personal

sense of empowerment (POQ items); independent

activitiesindependent activities of daily living (IADL); and

Flanagan life satisfactionQuality of Life (Flanigan’s QOL).

Subscales were checked for internal consistency using

Cronbach’s Alpha, a measure of internal consistency

reliability (Crocker & Algina, 1986). Pearson product

moment correlations were calculated between all scales with

suitable internal consistency reliability. This provided a

correlation table showing the relationships between the

73

various facets. As Diener (1994) has observed, in QOL

studies that use multiple measures of QOL, both convergence

and divergence of measures help us understand QOL.

Basic dDescriptive statistics were performedobtained

and reported, describing the RQOL of the sample. A

multivariate

Subscale scores will be obtained independently to

create a scale score profile. An Overall QOL score will be

obtained from the scale score profile. This will produce six

subscale scores, a QOL profile, and global rehabilitation

QOL score for each participant.

Basic descriptive statistics will then be performed and

reported. Intercorrelations of subscales will be obtained to

produce an intercorrelation table. This intercorrelation

table will show the Pearson product moment correlations

between each of the six subscales as well as the Overall OL

scores.

Aanalysis of variance (MANOVA) of the mean scale scores

resulted in a multivariate F statistic, derived from Wilk’s

lamba, and Overall QOL scores will be performedto determine

74

whether RQOL facet sub-scale scores varied by: gender,

medical class level of injury (paraplegic / tetraplegic),

age group, marital status, and living arrangements.

Variables within a significant MANOVA were further analyzed

with univariate ANOVAs, utilizing Tukey’s Honestly

Significant Difference multiple comparison test, useful with

un-equal numbers of participants in the various groups, to

determine significantly different groups (Hatcher &

Stepanski, 1996).

A multiple regression model will be developed using the

scale scores, representing the six facets as independent

variables with Flanagan’s subjective self-report of

importance / satisfaction scores as the dependent variable.

The hypothesized model will be stated prior to performing

this analysis. The purpose of this analysis, rather than

prediction, is to provide an explanatory model .

Subscale scores will be obtained independently to

create a scale score profile. An Overall QOL score will be

obtained from the scale score profile. This will produce six

subscale scores and Overall QOL scores.

75

Basic descriptive statistics will then be performed and

reported. Intercorrelations of subscales will be obtained to

produce an intercorrelation table. This intercorrelation

table will show the Pearson product moment correlations

between each of the six subscales as well as the Overall QOL

scores.

It was decided by the research team that to adequately

tap all facets of QOL, additional items are needed that

measure personal empowerment and self-reported subjective

QOL. For the purpose of measuring personal empowerment it

was decided that two scales from the POQ, Self Determination

and Positive Identity, would be used (Bolton & Brookings,

1999). These scales were used in the SRLS in their entirety,

and placed in the scale as they appear in the POQ (appendix

1). The self-reported QOL items are taken from Flanagan’s

QOL study (Flanagan, 1978, 1982). These self-reported QOL

items are weighted according to importance and satisfaction.

The QOL items measure: material well-being and financial

security, health and personal safety, relations with people,

social community and civic activities, personal and

76

spiritual development and fulfillment, overall quality of

life (appendix 1).

Minimult, HSS, ADL, and IADL items were chosen from a pool

of items consisting of all of those items used in earlier

studies on this population by Cook, et. al. For the current

study researchers first reviewed the pool of all items used

in previous studies and removed all of those items which

might now be offensive due to language or substance. From

the remaining pool of items, items which obtained

information pertaining to the sought after facets of QOL

were retained. The retained items were then placed into the

new instrument in the same format in which they had

previously been used (appendix 1).

Instrument used for data gathering is referred to as the

LS 2000. The LS 2000 consist of 90 items. There are six

subscales within the LS 2000, consisting of between eight

and twenty-six items. These subscales represent the six

facets of QOL under investigation. Items were drawn from

scales used in the earlier study as well as items added from

Flanagan’s Quality of Life Scale, a weighted self report of

77

life quality, and the Personal Opinions Questionnaire, a

measure of intrapersonal empowerment. Items drawn from the

previously used scales included: the Minimult, a measure of

emotional well being; the Human Services Scale, a measure of

motivation; Selected activities of daily living and

demographic items were also obtained from previously

collected data as well as from items contained in the

LS2000. Modern test theory methods will be utilized to

determine the reliability and validity of the administration

of the LS 2000.

78

CHAPTER FIVE

Discussion

This chapter contains discussion of study methods and

results. This study conceptualized and measured key facets

of Quality of Life (QOL) as reported by Arkansas Spinal Cord

Commission (ASCC) clients with spinal cord injuries (SCI),

at least twenty-five years after these clients participated

in earlier Arkansas Rehabilitation Research and Training

Center (ARRTC) studies (Cook, 1978). This was accomplished

by: conceptualizing QOL as it relates to rehabilitation

counseling and developing an instrument, the Rehabilitation

QOL Inventory (RQOLI), measuring six facets of QOL relevant

to rehabilitation counseling; cross referencing files from

the original ARRTC study with Arkansas Spinal Cord

Commission (ASCC) data bases to determine surviving ARS

clients with SCI, and obtaining current addresses for those

79

clients; mailing the RQOLI instrument to those clients using

mail survey methods; and then compiling the data obtained

from the mail survey for statistical analysis.

Through these procedures, the study addressed the

following questions:

1. Are each of the scales measuring the six facets of

QOL reliable (internally consistent)?

4. What are the relationships between the six facets of

QOL under study?

3. How do former vocational rehabilitation spinal cord

injured clients describe their QOL twenty-five

years after first service?

4. Does QOL vary by age, gender, level of injury,

marital status, or living arrangements?

Conceptualizing Rehabilitation Quality of Life

Quality of life (QOL) is a symbolic term and a

construct of interest in non-medical rehabilitation

counseling (RQOL), representing important principles of the

80

new paradigm of rehabilitation counseling services such as

choice, independence, and self-determination. RQOL has the

potential to serve as a bridge of rapport between consumers

of rehabilitation counseling services who have criticized

the long-standing traditional medical model of

rehabilitation counseling services, who have their own

perspectives, preferences, and priorities that have been

known to be different from rehabilitation counselors and

researchers (Chubon, 1995; Hatton, 1998); and providers of

the new paradigm of rehabilitation counseling services,

where client direction is an expectation (Estores, 2003).

RQOL is appropriate for the new paradigm of rehabilitation

counseling services, where the expectation and

responsibility of developing, and implementing a plan of

rehabilitation has shifted from the counselor to the client.

There is an expectation that client directed plans of

service will be individualized, and therefore subjective,

and thus a subjective, idiosyncratic so is RQOL. Assessing

QOL information is something nearly every human does on a

constant basis. Judgment of good or bad has meant survival

81

since the earliest humans. The individuals’ higher order

assessment of QOL, includes judgments about those areas of

life important to them, and how well those areas of life are

being fulfilled.

QOL is a broad and inclusive term, as it can include

judgments, from all perspectives, regarding all aspects of

life. This inclusiveness has often led to confusion, and a

conclusion that QOL is too broad to be useful

(Wolfensberger, 1999). It is, therefore, necessary to

operationally define QOL, as it relates to rehabilitation

counseling (RQOL), or non-medical rehabilitation, in order

to measure and analyze it.

There is a great deal of difference in those facets of

life medical rehabilitation researchers, as opposed to

rehabilitation counseling researchers, find of relevance.

None-the-less, medical rehabilitation researchers are more

advanced in their study and clinical use of QOL. Therefore

reviewing medical rehabilitation research provides valuable

information, useful in RQOL development. Medical

rehabilitation research has developed the term health related

82

quality of life (HRQOL), representing the operational definition

of QOL generally used in this primary area of

rehabilitation, with its focus on medical stabilization and

symptom amelioration, thus specifying that area of QOL

relevant to their studies. Rehabilitation professionals

involved in the medically focused phase of rehabilitation,

respond to client’s immediate needs, medical stabilization,

symptom amelioration, and / or physical therapy. There are

numerous medical conditions, such as multiple sclerosis

(MS), cancer, and chronic obstructive pulmonary disease

(COPD), that may affect clients’ medical condition so that

they never achieve a state of medical stability. However, the

rehabilitation counseling model typically views the

rehabilitation process in phases, where clients achieve

medical stability in the phase prior to seeking

rehabilitation counseling services. HRQOL operationally

defines QOL for that area of rehabilitation involved with

medical interventions or therapies, such as oncology, thus,

“HRQOL refers to the extent to which one’s usual or expected

physical , emotional, and social well-being are affected by

83

a medical condition or its treatment” (Cella, 2001, p 58).

In keeping with the medical paradigm of services, HRQOL is

often objectively measured, at times using physiological

measures and other times professional ratings of

performance. The assumption that increased physical

functioning and fewer symptoms are strongly and positively

correlated with QOL provides for HRQOL indicators of QOL

that have little relationship to the principles of

empowerment, choice, independence or self-determination that

QOL symbolizes in rehabilitation counseling. It is

interesting to note, however, the rationale presented in

HRQOL research for preventing early-stage, complete cervical

SCI persons from deciding to end life-support measures is

based upon indicators of subjective, psychological

adjustment; low suicide rate of tetraplegic SCI people, and

findings showing the majority of persons with tetraplegic

SCI, post rehabilitation, are glad to be alive; not

observable measures of increased function or decreases in

symptoms.

84

Rehabilitation counseling, responding to those client

needs post medical-stabilization, requires an operational

definition of QOL that reflects its focus on social function

and psychosocial adjustment. There is a difference in

purpose when asking, how far can you walk in six minutes

(HRQOL); or asking if one’s health interferes with their QOL

(RQOL). It is the latter question that RQOL is concerned

with. A testable model of QOL for rehabilitation counseling

(RQOL) was conceptualized that incorporated two major agreed

upon properties of QOL as it relates to rehabilitation

counseling, QOL is subjective and multifaceted (Cella,

2001). A RQOL operational definition was determined that

included six measurable facets, that reflect aspects of life

rehabilitation counseling efforts seek to affect: activities

of daily living (ADL); independent activities of daily

living (IADL); emotional well-being (EWB); psychological

well-being (PWB); empowerment (EMP); and , life satisfaction

(FLS). ADL, IADL, EWB, and PWB instruments have a long

history of use in rehabilitation, where increased social

function and psychosocial adjustment have been topics of

85

rehabilitation research for many years. The ADL, IADL, EWB,

and PWB scales used in this study have been used in

rehabilitation research at least 25 years. The more recently

developed Personal Opinions Questionnaire, from which the

EMP scale, used in the RQOLI, was developed by Bolton and

Brookings (1998) specifically for use in rehabilitation

counseling, in response to the growing emphasis on client

empowerment.

Flanagan, after providing results on his national

critical incident study of what makes or takes away from the

good life, further suggested that QOL could be determined

for people with disabilities (PWD) (Flangan, 1982). Flanagan

proposed utilizing his critical incident method on a large

sample of PWD, in order to determine whether there were

major life areas / events identified by PWD not identified

by the Flanagan study of non-disabled people (Flanagan,

1978, 1982). Thus far there has been no such major study,

however, the FLS, in slightly varying forms, has been

satisfactorily used with PWD (Stineman, 2001). The FLS

facet sub-scale items of the RQOLI simply ask the respondent

86

the importance of life areas, determined by the Flanagan

study, and then how satisfied they are with those areas.

There is one final item in the sub-scale that ask the

respondent how they rate their own QOL. Numerous

rehabilitation researchers have used FLS, measured in

various ways, in medical and non-medical rehabilitation QOL

measurement.

RQOL, measured by the facet sub-scales, in keeping with

the rehabilitation counseling values it represents, was

self-reported, and designed to provide a causative profile of

RQOL facet measures; as opposed to an additive model, where

facet sub-scale scores summed would provide some meaningful

overall RQOL score. At this exploratory stage of developing

an understanding of RQOL and its measurement, it is

important to explore a battery of measures, as Diener (2000)

has observed; “different methods of measuring [QOL] can

produce different scores, a battery of diverse measures will

produce the most informative composite The Rehabilitation

Quality of Life Inventory (RQOLI) instrument designed to

measure RQOL in six facet sub-scales, was set up in such a

87

way as to allow for the study of the relationships between

the various facets of RQOL, thus providing important

information regarding long-held beliefs or assumptions

associated with rehabilitation counseling. Bishop and Feist-

Price (2002), suggest QOL measures that use the most

relevant dimensions for rehabilitation counseling, but there

has thus far been no instrument or measurement covering

those facets or dimensions specifically derived from

rehabilitation counseling. As Cella (2001), an oncology

HRQOL researcher has emphasized, “if QOL researchers are

successful, the end user of a QOL measurement will not be a

psychometrician or social scientist, it will be a health

care provider (rehabilitation counselor)”.

Dijkers (1997, 2000), a long-time SCI QOL researcher,

through a meta analysis of QOL after SCI research, found

associations between factors such as (level of) handicap and

QOL, reported from various studies often conflicting; and

concluded that the small number of studies currently

available made further analysis impossible. Dijkers (2000)

has utilized various methods of QOL measurement, including

88

the SF-36, Flanagan- like QOLS, and Gottschalk / Lolas Life

3 (based on content analysis of verbal behavior); and has

published or presented reviews of at least 15 QOL measures

used with persons with SCI. Dugan and Dijkers (2001)

currently use a method of measuring QOL utilizing

qualitative gathering of respondent QOL data through

structured interviews, lasting 45 minutes to two hours. In

many cases rehabilitation counselors spend similar amounts

of time doing intake interviews and developing an

understanding of the new client. Developing an

understanding of RQOL and how it can be applied in the

rehabilitation counseling relationship was of utmost

importance in this study.

Participant Demographics

The excellent response rate for this study was seen in

large part due to the long-standing relationship between the

sample population of Arkansans who had SCI for over 25

years, the Arkansas Rehabilitation Research and Training

Center (ARRTC) and the Arkansas Spinal Cord Commission. Of

the 129 possible study participants, 109, or 84% chose to

89

participate. Doubtless, these people with SCI have seen

tremendous advances in SCI care and needed service delivery

over the past 25 years with the development of Model SCI

Centers advancing best practices models of SCI medical

care, Independent Living Centers promoting self-reliance and

independence, and other specialized life-long SCI services,

that have direct ties with SCI research.

Another point regarding the population sampled and the

study participants; there is a strong likelihood that as

survivors of the original 297 ARRTC study participants 25

years ago, they share not only many environmental but also

some likely physiological and psychological traits. This

likely homogeneity was not so statistically significant as

to impact the study’s MANOVA analysis, but certainly should

be recognized. Boschen (1996) has reported that SCI studies

conducted over the last 30 years have identified good

health, economic security, social interaction, and control

over their living environment, among other factors, to be

positively correlated with life satisfaction. It is tenable

that these same factors would have a meaningful relationship

90

with “survival”, or aging. Charlifue and Gerhart (2004) have

recently reported a noteworthy relationship between earlier

QOL and later perceived stress, depression, and well-being.

Guyatt, Feeny, and Patrick (1993) report that self-rated

client perceived health was a significant predictor of death.

Participant gender was reported as 73% male, and

remained relatively unchanged when compared with 76% male

reported for the original ARRTC study and 73% male for the

first follow-up (Cook & Bolton, 1980). Similar ratios of

male to female samples have been recently reported by

Franceshini, Clemente, Rampello, & Spizzichino, (2003),

who reported 71.2%males; and Lee & McCormick (2004), who

reported their sample as 72.7% male. Krause (1997,1998a,

1998b), a long-time and prolific SCI researcher reported SCI

samples as high as 84% male, and achieved a male sample of

60% in a study that, in an attempt to achieve a balanced

male / female sample, purposively used oversampling

techniques to account for the large ratio of SCI males to

females. That samples are heavily male is not surprising,

91

when reported incidence of SCI is four males to one female

(Gambill & Scott, 1997).

The sample reported level of SCI as 79% paraplegic, 21%

tetraplegic, a ratio of 3.8 paraplegic to tetraplegic; while

the original ARRTC study reported 65% paraplegic, and 35%

tetraplegic, a ratio of only 1.8. This suggest that level of

SCI was having an affect on longevity, with more paraplegics

having a higher survival rate. Other recent SCI studies

have reported samples as evenly distributed as 47%

paraplegic / 53% tetraplegic (Lee & McCormick, 2004),

however, such distributions are likely dependent upon the

population being sampled and / or level of study

participation. Due to the high response rate of this study,

it is highly tenable that the distribution of level of SCI

may be generalized to the population sampled.

Marital status was reported as 40% single and 40%

married, with 15% separated or divorced, and was little

different from the original study. Living arrangements had

changed from earlier studies of the participants, reported

as 25% living alone, 40%livng with spouse and/or children,

92

22% living with parents. There was an increase over time in

the number living alone, reported in the original study as

only 12% (now 25%), and a decrease in living with parents

from the original study report of 36% (now 22%). These

changes are likely due to the results of aging on others,

such as parents, who may after 25+ years, be deceased or

experiencing declining strength, stamina, and / or health;

and thus be unable to perform the duties of a caregiver.

The mean age was reported as 48.3 years, while Cook

(1977) found a mean of 30.2 years for participants in the

earlier ARRTC study. Adding 25 years that have passed to

the earlier mean age of 30.2 years, gave an expected mean of

55.2 years, if survival was equally distributed among all

ages. However, the actual mean age reported of 48.3 years

would indicate, as would be normally expected, that older

persons die from natural causes associated with aging more

often than younger persons.

Overall, demographics were not spectacular. The

response rate indicates that obtained demographics are

representative of the population sampled. The large increase

93

in the number of participants living alone, as they age with

SCI, points to the need for understanding the QOL of this

aging group. Aging will continue to affect family care-

givers (as well as hired attendants),indeed aging has been

shown to affect ones entire social network and place in

community; continuing the trend of living alone. Meanwhile,

people with SCI will continue to experience the same effects

of aging experienced by all people, including: declining

general health, increased disability and handicap, and

decreased mobility (Charlifue & Gerhart, 2004; Krause, 1998;

Krause & Crewe, 1987).

Facet Sub-scale Reliability

Facet sub-scale reliability was analyzed by calculating

Cronbach’s Alpha (α), a measurement of internal consistency

reliability. The reliability coefficient, Cronbach’s α,

indicates the percent of the participant’s observed or

obtained score, that is really measuring the underlying

facet of RQOL the sub-scale is theoretically said to be

measuring. It has been suggested that a scale for formal or

predictive use in the social sciences should have a

94

reliability coefficient of .70 or above. Reliability

estimates were satisfactory, .74, .77, .84, .87, and .89 for

the Empowerment (Emp), emotional well-being (EWB); Flanagan

Life Importance / Satisfaction (FLS); and psychological

well-being (PWB) sub-scales respectively. One of the six

sub-scales, the Independent Activities of Daily Living

(IADL) sub-scale, had coefficient α lower than .70,

coefficient α, .56. As this is an exploratory study, gaining

all of the information available including performance of

the sub-scales themselves, cautiously retaining the IADL

sub-scale outweighs any attenuation of statistical

procedures that might ensue from including the borderline

IADL scale in further analysis. It was therefore decided

that for the purposes of this study, all sub-scales would be

included for further analysis.

Sub-scale Distributions

Examination of sub-scale univariate statistics

indicated that none of the sub-scales had normal

distributions. This is to say that the sample sub-scale

score distribution obtained, indicates that the construct

95

being measured by the facet sub-scale is probably not

normally distributed in the population. For example, scores

on the EWB sub-scale,

where higher scores indicated lower level of

psychopathology or increased emotional well-being, are

negatively skewed , -.52, indicating scores “piled up” on

higher scores (see Table 5.1). There were some lower EWB

scores, reflecting increased psychopathology, however there

were fewer low scores than would be found in a sample

representative of a population where EWB was normally

distributed. The EWB kurtosis coefficient is negative, -.33,

indicating the shape of the EWB distribution is

platykurtic (flat), indicating scores “clumping up” or

falling within a restricted range. The ADL sub-scale had the

same, slightly less extreme, distribution pattern (see Table

5.1). The PWB sub-scale distribution was negatively skewed

(“piled up” on the high end), yet leptokurtic (peaked),

while the EMP sub-scale distribution was positively, though

minimally skewed and was platykurtic. The IADL sub-scale

distribution was the only sub-scale positively skewed enough

96

to indicate abnormality, where there were more low scores

than normal, and only slightly platykurtic.

The Shapiro-Wilk statistic test the null hypothesis

that obtained sample data were drawn from a normally

distributed population (Hatcher & Stepansky, 1994). Review

of Shapiro Wilk statistics (see Table 5.1), further

confirmed that sample sub-scale score distributions were not

normal.

Table 5.1

Rehabilitation Quality of Life Inventory Facet Sub-scale Sample Size, Mean, Standard

Deviation, Skewness Coefficients, Kurtosis Coefficients, andShapiro-Wilk P Value

N Mean SD Skewness

Kurtosis Shapiro-Wilk p valueSub-sale Pr < W

97

EWB 99 20.05 2.83 -.52 -.65 .0001

PWB 96 71.33 13.13 -.38 .40 .0114

EMP 85 39.68 4.14 .19 -.50 .0467

ADL 101 23.41 5.54 -.49 -.33 .0022

IADL 107 14.27 3.94 .57 .14 .0017Note. Shapiro-Wilk p value greater than .05 indicates sampleprobably represents a population where construct is normallydistributed.

If one or two sub-scales demonstrated abnormal

distributions, it would follow that there was a specific,

technical sub-scale cause. However, that all sub-scales had

distributions indicating they were not drawn from a normally

distributed population, makes it tenable that the abnormal

distributions are, at least in large part due to the

construct not being normally distributed in the unique

population the sample represents. Remember that the sample

frame of participants for the study were persons with SCI

that had participated in ARRTC studies, 25 years pervious.

98

SCI is not a static health state, people with SCI experience

aging. Just as there are likely physiological, sociological,

and psychological traits shared by normal survivors of a

cohort group into old age (Frohm, VictorMans Search for

Meaning), there are also likely numerous traits shared by 25

year survivors of a cohort group of persons with SCI. The

facet sub-scale data do not approximate a normal

distribution, however, the scales all displayed adequate

internal consistency reliability, with the exception of the

IADL sub-scale that may well have technical measurement

problems.

The RQOLI facet sub-scales have abnormal distributions,

therefore dictating, to some degree, the following data and

statistical analysis used to answer the questions of the

study. The correlational part of this study can be

accomplished utilizing Spearman rank-order correlation

coefficient calculations, that are distribution free. While

the non-normal distributions of the sub-scales are a

violation of the normality assumption in ANOVA, and the

multivariate normality assumption of MANOVA, even severe

99

violations of normality have been shown to have a small

effect on Type I error (falsely rejecting a true null

hypotheis). Stevens (1996) cites studies regularly reporting

actual α level within .02 of level of significance, or

stated α level, even when severe infractions of abnormality,

both univariate and multivariate, and group size exist. Of

greater concern is that platykurtic distributions attenuate

power (correctly rejecting a false null hypothesis)

(Stevens, 1996).

Facet Sub-scale Relationships

In order to determine how the various facet sub-scales

of the RQOLI were related, Spearman rank-order correlation

coefficients between the facet sub-scales scores of

participants were calculated.

Section on Facet Relationships

The high degree of correlation amongst the RQOLI facet sub-

scales gives further reasoning for use of the term facets, as

compared to the sometimes used term dimensions. Facets are

100

aspects, or views of QOL, as opposed to dimensions, that

would indicate an area or capacity that lends itself to

measurement.

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