Post on 29-Mar-2023
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
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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
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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, &
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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,
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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.
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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).
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“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,
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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
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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
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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.
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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.
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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
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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).
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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
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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);
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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
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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;
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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
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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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