THE DEVELOPMENT OF THE NO RMALIZATION ASSESSMENT MEASURE [608114]

THE DEVELOPMENT OF THE NO RMALIZATION ASSESSMENT MEASURE

By

Cynthia Ann Schnetter O’Neal

Dissertation
Submitted to the Faculty of the
Graduate School of Vander bilt University
in partial fulfillment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY
in
Nursing Science
May, 2007
Nashville, Tennessee
Approved:
Professor Kenneth A. Wallston
Professor Nancy Wells
Professor Mary Dietrich
Professor Craig Ann Heflinger

ii

I dedicate this dissertation:

To my mother and father for encouraging me to dream, for fostering a strong
foundation to pursue the dream, and for lo ving and supporting me to reach the
dream

To my husband, Dan, for his unquestioning devotion and support while I
dreamed

To my son, Christopher, who I will love to infinity and beyond

To my sis, Pamela, for her unwaveringly support

iiiACKNOWLEDGMENTS

I would like to thank the Vanderbilt University Graduate School for the
Dissertation Enhancement Award, the Asso ciation of Rehabilitation Nurses and
Sigma Theta Tau for funding this disse rtation and the South Plains Nursing
Education Coalition for an education scholarship. I would also like to
acknowledge Dr. William Ratnoff for his enthusiasm about this research and for
assisting me to gain access to his patients. He additionally in troduced me to Dr.
Bushan who allowed me to recruit potential participants in his office.
I especially extend heartfelt gratit ude to the members of my committee
who have patiently supported and believed in me and this research: Dr. Kenneth
Wallston, Dr. Nancy Wells, and former committee members Dr. Carole Ann
Bach, Dr. Joseph Hepworth, and Dr. P eggy Thoits. The committee has been
encouraging and supportive throughout the process. Dr. Kenneth Wallston, as
my committee chair, has been invaluable in sharing his expertise and guidance
throughout my doctoral education. I would also like to thank two newer members
of my committee, Dr. Mary Dietrich and Dr . Craig Ann Heflinger , for their support
and willingness to assist me during this la st year. Additionally, I would like to
acknowledge Dr. Kathleen Knafl, an expert in the field of family coping and
normalization, who has graciously di alogued with me on several occasions.
Above all, I thank my family. My husband, Dan and my son, Christopher,
whose commitment to my education made this possible, are the joys of my life. I

ivwould like to also thank my mother and fath er for inspiring the best in me. Thank
you all!

vTABLE OF CONTENTS

Page
DEDICAT ION …………………………………………………………………………………………..ii
ACKNOWLEDG EMENTS ………………………………………………………………………….iii
LIST OF T ABLES ……………………………………………………………………………………vii
LIST OF FI GURES ………………………………………………………………………………… viii
Chapter I. INTROD UCTION …………………………………………………………………………… 1
Chronic illness ………………………………………………………………………….. 1
Normaliz ation …………………………………………………………………………… 2
Problem statem ent ……………………………………………………………………. 2
Purpose…………………………………………………………………………………… 3 Signif icance ……………………………………………………………………………… 3
II. REVIEW OF LITERAT URE …………………………………………………………….. 6

Defi nitions………………………………………………………………………………… 8
History ……………………………………………………………………………… 8 Recent co nceptualizat ion ………………………………………………….. 11
Study definitio n………………………………………………………………… 14
Attri butes ……………………………………………………………………………….. 15
Univ ersality……………………………………………………………………… 15
Cognitive and behavioral strategies of nor malizatio n …………….. 17
Adaptive vs maladapt ive……………………………………………………. 20
Antec edents …………………………………………………………………………… 21
Change in health st atus…………………………………………………….. 21
Desire for normalc y ………………………………………………………….. 22
Infl uences ………………………………………………………………………………. 22
Social support………………………………………………………………….. 22
Percei ved contro l……………………………………………………………… 24
Disease intrusivenes s……………………………………………………….. 27
Outcomes………………………………………………………………………………. 28 Qualit y of lif e……………………………………………………………………. 28
Mastery…………………………………………………………………………… 29 Nonc omplianc e………………………………………………………………… 30
Resource utilizatio n ………………………………………………………….. 30

vi Maintenance of social ties …………………………………………………. 31
Explanation for out comes of norma lization …………………………… 31
Proposed conceptual framework ……………………………………………….. 33
The shifting perspective s model …………………………………………. 35
Sick ro le adoptio n…………………………………………………………….. 37
Assump tions…………………………………………………………………………… 38
Research questi ons: Phas e one……………………………………………….. 38
Definition of terms……………………………………………………………………. 39
Norma lization ………………………………………………………………….. 39
Research questi ons: Phase two ……………………………………………….. 39
III. METHODOLOGY: PHASE ON E……………………………………………………. 42
Research design …………………………………………………………………….. 42
Research setting ……………………………………………………………………… 42
Samp le ………………………………………………………………………………….. 43
Criteria for sample sele ction………………………………………………. 43
Criteria for inclus ion………………………………………………………….. 44
Nature and si ze of the sample ……………………………………………. 45
Human su bjects’ ri ghts ……………………………………………………… 45
Methods for sample recr uitment …………………………………………. 47
Data Collec tion Met hods ………………………………………………………….. 48
Pr ocedures ……………………………………………………………………… 48
RESULTS: PH ASE ONE ………………………………………………………………. 50

METHODOLOGY: PHASE TWO …………………………………………………… 51
Sample and recr uitment proc edures…………………………………………… 51
Methods for sample recr uitment …………………………………………. 51
Nature and si ze of the sample ……………………………………………. 52
Data collect ion met hods …………………………………………………………… 53
Pr ocedures ……………………………………………………………………… 53
Demograp hic questio nnaire……………………………………………….. 55
Normalizat ion measur e……………………………………………………… 55
Perceived control meas ures………………………………………………. 55
Illness intr usiveness meas ure ……………………………………………. 57
Quality of life meas ures…………………………………………………….. 58
Social ties meas ure ………………………………………………………….. 60
Copi ng measur es …………………………………………………………….. 61
Sick role nona cceptance m easure ……………………………………… 62
Social des irability meas ure………………………………………………… 63
DATA ANAL YSIS…………………………………………………………………………. 63
IV. PHASE TWO STUDY RESULTS……………………………………………………. 65

vii Unidimensional vs multidimens ional……………………………………. 65
Descripti ve statis tics…………………………………………………………. 68
Re liability ………………………………………………………………………… 68
Va lidity……………………………………………………………………………. 71
H1: Normalizat ion and problem focu sed copi ng ……………….. 71
H2: Normalizat ion and emotion focu sed copi ng ……………….. 72
H3: Normaliz ation and sick role nonacceptance……………….. 73
H4: Normaliz ation and social desirabilit y…………………………. 73
H5: Normalization and the diagnosis of Fibromyalgia………… 74
H6: Normalization and length of time si nce diagnosis ……….. 74
H7: Norma lization and perceiv ed contro l…………………………. 75
H8: Normalizat ion and illness intr usiveness …………………….. 75
H9: Normalizati on and QOL ………………………………………….. 75
H9a: QOL as a functi on of normalization, perceived control
illness intr usiveness ……………………………………………….. 76
H9b: Normalization uni quely explains variance in QOL……….. 77
H10: Norma lization and soci al ties …………………………………… 77
H10a: Normalization and social ties, perceived control, Illne ss intrusiv eness……………………………………………….. 78
H10b: Normalization uniquely explains variance in social ties .. 78 H11: Illness in trusiveness as a moderator …………………………. 78
H11a: High il lness intrus iveness ……………………………………….. 79
H11b: Low illness intrus iveness ………………………………………… 79
H12: Perceived control as a mo derator…………………………….. 79
V. DISCU SSION ……………………………………………………………………………… 81

Construct validity …………………………………………………………………….. 86
Discriminan t validit y…………………………………………………………………. 95
Threats to stat istical valid ity………………………………………………………. 96
Limitati ons ………………………………………………………………………….. 96
Future research ………………………………………………………………………. 99
Conclusi on ………………………………………………………………………….. 99
APPENDIX A ……………………………………………………………………………………. 101
APPENDIX B ……………………………………………………………………………………. 114
REFERENC ES……………………………………………………………………………………. 144

viii
LIST OF TABLES

Table Page
1. Historical development of normalization definiti ons …………………………….. 7
2. Normalization on three levels of two dimensions of action………………….. 11
3. Item stat istics ………………………………………………………………………………. 70
4. Descriptive statistics for mean Item scores………………………………………. 71
5. Correlations between normaliz ation and coping measures…………………. 73

ix
LIST OF FIGURES

Figure Page
1. Proposed concept ual framew ork ……………………………………………………. 21
2. Scr ee plot ……………………………………………………………………………………. 66
3. Histogram of the normalization asse ssment meas ure ……………………….. 69

1CHAPTER I

INTRODUCTION

Chronic Illness
Currently, scientific advances in the di agnosis and treatment of chronic illnesses
have resulted in a society where indi viduals live longer and manage complex
diseases on a daily basis. Diseases ar e considered to be chronic when there is
an incurable, altered health state t hat requires long term management and
treatment in order to prev ent pathological progression and to preserve function
(Lubkin, 1998; Sidell, 1997). The impact of chronic illness is significant for
individuals, families, and communities. In fact, more than 25 million people must
cope with chronic conditions. Financially , chronic diseases account for 75% of
the nation’s total health care costs (National Center for Chronic Disease
Prevention and Health Promotion, 2002).
In addition to high financial costs, ch ronic illness results in unpredictable
and potentially stigmatizing physical and psychological consequences. These consequences are often disruptive to t he pursuit of daily activities. In
stigmatization, individuals who appear or behave outside the expected range of
normal are attributed to have less val ue by others (Goffman, 1963). Due to
illness or treatment effects, individuals with chronic illness may appear to others
to be outside the expected norms either ph ysically or behaviorally. Individuals
and families often cope with this potential stigmatization by minimizing the

2illness’s impact upon life activities and living as normally as possible. This
coping process is termed normalization (Knafl & Deatrick, 1986; Miles, 1979;
Robinson, 1993; Strauss et al., 1984).

Normalization
Normalization is defined as one way of adapting to chronic illness, and is
comprised of several coping strategies that enable individuals and families to
maintain typical life patte rns (as defined by the individual or family) while
acknowledging the presence and signific ance of the illness (Hilton, 1996; Knafl &
Deatrick, 1986; Miles, 1979; Robinson, 1993; Strauss et al., 1984). Coping
strategies are cognitive and behavioral tactics used by individuals when
demands are appraised as stressing the re sources of the person (Lazarus &
Folkman, 1984). Through these coping e fforts, individuals can change the
stressful situation, alter t he meaning of the stressful si tuation, or control their
reaction to the stressful situation (Jones, 1991).

Problem Statement
To date, research findings have asso ciated normalization with the following
outcomes: (1) both a positive and negativ e quality of life (Anderson & Chung,
1982; Robinson, 1993; Wiener, 1975); (2 ) both compliance and noncompliance
with treatment regimens (Anderson, 1986; Deatrick, Knafl & Murphy-Moore,
1999; Gerhardt & Brieskorn-Zinke, 1986; Jerrett & Costello, 1996, Miles 1979; Rehm & Franck, 2000); (3) increased and decreased resource utilization (Hilton,

31996; Miles, 1979; Robinson, 1993, Royer, 1995); and (4) maintenance of social
ties (Dewis, 1989; Rehm & Franck, 2000).
Normalization research has been predomin antly qualitative. Currently, there
is no measurement instrument for norma lization. The contradictory outcomes
associated with normalization necessitate further investigation, particularly
quantitatively. The concept of normalizati on requires further refinement with both
qualitative and quantitative res earch, but the lack of a no rmalization measure is a
problem if one is to pursue this phenomenon quantitatively.

Purpose
The purpose of this study was to re fine the concept of normalization by
developing a normalization measure and to ascertain the psychometric
properties of the instrument using a sample of individuals diagnosed with
rheumatogical conditions.

Significance
The prevalence of chronic illness and its associated cost in terms of
financial loss, loss of produc tivity, and emotional tolls supports the premise that
understanding how patients cope with ch ronic illness should be a research
priority (O’Brien, 1993). Nursing profe ssionals have a unique role in facilitating
the transitions associated wit h chronic illness (Deatrick et al., 1999; Meleis, 1997;
Robinson, 1993). In numerous settings, nurses have direct contact with individuals and families experiencing chr onic illness. This gives nurses the

4opportunity to assess individual and family coping. In fact, normalization has
been used as a way for health professional s to evaluate an individual’s or
family’s effectiveness in managing chronic illness.
In families experiencing difficulty copi ng with chronic illness, the promotion
of normalization has been recommended (Knafl, Deatrick & Kirby, in press). The
Nursing Intervention Classification syst em (NIC) identifies the promotion of
normalization as a nursing interventi on, which supports the notion that
normalization is both “positive” and signi ficant to nursing (McCloskey & Bulchek,
2000). Nurses’ promotion of normaliz ation can be integrated as a nursing
function in the context of Orem’s (1995) theory of self-care agency. Chronically
ill individuals experience the need for normalc y and seek a lifestyle that promotes
continued personal development. Nursing’s role, in Orem’s view, is to meet
these self-care requisites t hat the individual cannot meet alone and to foster self-
care agency.
The continued development and refinement of the normalization construct is
warranted because the circumstances of normalization with positive outcomes
and for whom normalization is beneficial re mains to be identified. Quantifying
this concept will provide a foundation for exploring the specific relationships
between influencing variables and normaliz ation, thus building more nursing
knowledge on this topic. With grea ter knowledge, nurses will intervene more
appropriately with chronically ill indivi duals and families. Expected outcomes
include better management of the chronic condition, incr eased health status, and
minimal detrimental effects on typical life patterns (Knafl et al., in press).

5Normalization research is significant to nursing because nurses need to
know when to promote normalization, how best to promote normalization, and
how to recognize the consequences of normalization. Quantitative research provides a way to describe specific rela tionships among variables and to predict
outcomes. The answers to the fo llowing questions would enhance our
understanding of normalization. What personal characteristics lead to successful
normalization? What specific circumstances (such as family life stage, disease
severity) lead to successful normalization? What individual characteristics and
specific circumstances in the midst of normalization lead to positive outcomes?
These questions are best answered by quantitative research; thus a
normalization measure is necessary.

6CHAPTER II

LITERATURE REVIEW AND THEORETICAL FRAMEWORK

In order to develop a measure of norma lization, there must be clarity about
the construct to be measured (DeVellis, 199 1). For the term normalization, there
are several different definitions reflect ed in the literature (s ee Table 1 on the next
page for a comparison of definitions). Wh ile several conceptualizations exist, two
conceptual analyses have resulted in a primar y definition. This primary definition
was used to guide this study. The followi ng discussion will describ e the historical
background of the definitions and then will pr esent the most rece nt definition that
is used in this study.
Theory can be utilized to guide scale devel opment. In addition to clarity
about the construct, theory can be a source of information for the design of items
to be included in the scale (DeVellis, 1991) . Previous research has resulted in
agreement about the cognitive and behavioral strategies used in normalization.
This area of agreement helps to est ablish clarity about the construct.
Additionally, the literature supports several consistent elements of the
normalization definition. In addition to exploring the def initions of normalization,
the following discussion will also pres ent information about the cognitive and
behavioral strategies, antecedents, influenc es and outcomes of normalization, as
well as the proposed conceptual framework.

7
Table 1: Historical Development of Normalization Definitions
Author/
Year Concept Definition Defining Characteristics

Schwartz
(1957)
Normalcy
Framework Deviant behaviors are
converted into a
reasonable perception 1. Acknowledge deviance
2. Rationalizing behaviors as normal
3. Family perspective of normal
4. Identity focus

Davis
(1961)
Deviance
Disavowal A 3-stage process
where the individual
rejects deviance and
is embraced as
normal by others 1. Process approach
2. Cognitive emphasis
3. Identity focus
4. Normal defined by social interaction
5. Fictional acceptance
6. Facilitation of reciprocal normalized role
taking
7. Institutionalizat ion of the normalized
relationship
Goffman
(1963)
Normalization Refers to normal
individuals treating a
stigmatized person as
normal 1. Emphasis on others'
perceptions
2. Emphasis on the
behavior of others

Wolfens-
berger
(1972)
Normalization Providing an
environment which is
as culturally normal as
possible in order to
establish or maintain
personal behaviors
and characteristics
viewed by the culture
as normal 1. Multi-level
2. Viewed as a meta theory
3. Normal is culturally defined
4. Environmental emphasis
5. Process and goal oriented
6. Human management applications

Knafl &
Deatrick
(1986)
Normalization A cognitive and
behavioral adaptation
process involving the
use of coping
techniques which
minimize the impact of
disease, enable the
individual to engage in
normal activities and
result in the
manifestation of a
normal appearance to
others 1. Acknowledge the impairment presence
2. Define life as basically normal
3. Illness social consequences minimized
4. Engage in behavior that demonstrate
normalcy to others
5. Individual and family perspective
6. Identity focus
7. Process & goal oriented
8. Cognitive & behavioral

Deatrick et
al.
(1999)
Normalization
Same as (1986) 1. Acknowledge impairment & seriousness
2. Define family from a normalcy lens
3. Engage in parenting and family routines
consistent with the normalcy lens 4. Incorporation of treatment regimens using
normalcy lens
5. View child and family as normal in
interactions with others

Morse et al.
(2000)
Normalization Identification with or
adoption of norms of a
targeted reference
group 1. Self-identity focus
2. Group may not be normal others
3. Comparison focus

8Definitions

History. The normalization construct has evol ved significantly over time.
The term normalization first appeared in the sociological lit erature with the
seminal works of Schwartz (1957) and Davi s (1961). Initially, normalization was
conceptualized as a cognitive strategy to explain others’ deviant behavior as
normal (Schwartz, 1957). Schwartz (1957) had observed that wives of psychotic
husbands often found ways to explain thei r husbands’ behavior in a way that was
consistent with the social ly acceptable or normal range of behavior. Schwartz
identified that these wives were operat ing from a “normalcy framework”.
This “normalcy framework” was s ubsequently applied to the cognitive
appraisal of the deviant individuals them selves. Davis (1961) used the term
“deviance disavowal” to describe this phenomenon. The concept was viewed as
a redefinition of self-attributes wher e visibly handicapped individuals rejected
their deviance and projected themselves in such a way as to be viewed as normal by others, hence “normalizing” the otherwise deviant individual. The
visibly handicapped perceived themselves as normal and similar to non-handicapped individuals. In 1963, Da vis expanded the use of this cognitive
construct when he described behavioral as well as cognitive strategies used by a sample of polio patients. In addition to identifying behavioral aspects of this
concept, this research brought the concept into the chronic illness realm.
Alternatively, Goffman (1963) used the term normalization to refer to the
treatment of deviant individuals by norma l individuals. Goffman differentiates

9“normification” from “no rmalization.” An individua l who presents himself as
normally as possible exemplifies normi fication, according to Goffman.
Normalization refers to normal individu als treating a stigmatized person as
normal. Except for recent research by Scherman, Dahlgren, & Lowhagen (2002),
the chronic illness literature consistently uses the term “normalization” for both
connotations. Scherman et al. (2002) identify normalization consistent with
Schwartz’s (1957) normalcy framework. Normalization is the interpretation of
illness symptoms as normal. The conceptualization of normification in this work
is consistent with Goffman (1963). Using t he historical definition of normalization
reflects a failure to acknowledge the evol ution of the concept. For the purposes
of this study, the term no rmalization was utilized instead of normification. This is
consistent with the predomi nant use of the term in the overall literature.
In the human management area, the concept of normalization became a
popular focus for care of the mentally retarded. The concept of allowing the
mentally retarded to live as normally as possible was written into Danish law in 1959. In 1969, the Swedish government adopted the Danish philosophy, and the
concept of normalization began to appear in Scandinavian literature. The
reformulation of the concept occurred with the writings of Wolfensberger (1972)
who defined normalization as the “utilizat ion of means which are as culturally
normative as possible, in order to est ablish and/or maintain personal behaviors
and characteristics which are as culturally normative as possibl e” (p. 28). He
described the term “normative” as sy nonymous with “typical” and explored
normalization both as a process and as a goal. In this literatur e, normalization is

10considered a human management approac h and is often an administrative
strategy. Because of this, normalization is referred to as a principle.
Wolfensberger (1972) formula ted the implications of normalization as two-
dimensional with three levels of acti on. See Table 2 on the next page for a
summary of these levels. In contrast to the identity and se lf-defining approaches
of Schwartz (1957) and Davis (1961, 1963) , Wolfensberger’s conceptualization
focuses on the perceptions of others and t he manipulation of the environment to
elicit or maintain behavior viewed by the culture as normal. In this
conceptualization, normalization is not a coping strategy but a management
approach. Wolfensberger’s conceptualiz ation of normalization currently is
viewed as the use of “cultural m eans that establis h, enable and support
behaviors, appearance, experiences and interp retations which are as culturally
normative as possible” for those indi viduals who may be devalued in society
(Wolfensberger, 1977). Cultural means hav e resulted in deinstitutionalization
and mainstreaming tactics.
Other definitions include those by Wiener (1975) and Gerhardt & Brieskorn-
Zinke (1986). Wiener ( 1975) defined normalization as any behavioral attempt
used in order to maintain a normal lif e and categorized normaliz ation by the use
of three strategies: covering-up; keeping -up; and pacing. She emphasized that
activities are engaged in as if normal des pite physiologic pr iorities. This
definition is strictly behavioral and, thus, lacks the cognitive element of
normalization. On the other hand, Ger hardt & Brieskorn-Zinke (1986) surmise
that normalization is a process of atte mpted mastery of tr eatment regimens

11through routinization. This definiti on consists of both cognitive and behavioral
aspects.

Table 2: Normalization on Three Level s of Two Dimensions of Action
(Wolfensberger, 1972, p.32)

Levels of Action Dimensions of Action

Interaction
Interpretation
Person Eliciting, shaping, and maintaining
normative skills and habits in
persons by means of direct
physical and social interaction with them Presenting, managing,
addressing, labeling, and
interpreting individual
persons in a manner emphasizing their similarities
to rather than differences
from others

Primary and
intermediate social
systems Eliciting, shaping and maintaining
normative skills and habits in
persons by working indirectly
through their primary and intermediate social systems, such
as family, classroom, school, work
setting, service agency and neighborhood Shaping, presenting and
interpreting intermediate
social systems surrounding a
person or consisting of target persons so that these
systems as well as the
persons in them are perceived as culturally
normative as possible

Societal systems Eliciting, shaping, and maintaining
normative behavior in persons by appropriate shaping of large
societal social systems, and
structures such as entire school systems, laws, and government Shaping cultural values,
attitudes, and stereotypes so as to elicit maximal feasible
cultural acceptance of
differences

Recent Conceptualization . Consistent with the early work of Davis,
successful normalization currently is view ed by nursing and in the health related
literature as both a cognitive and behaviora l process. Researchers subsequent
to Davis have continued to examine no rmalization of individuals and families
experiencing chronic illness, and to build on the dimensions of the process
(Knafl, et al., in press). Knafl and Deat rick (1986), in a conceptual analysis of

12normalization, identified four key elements exhibited by individuals using this
process.
The elements identified by Knafl and D eatrick included: (a) acknowledging
that the impairment is present; (b) defining life as basically normal; (c) minimizing
the social consequences of the illness; and (d) engaging in behavior that demonstrates normalcy to others. In other words, an individual or family who
normalizes accepts that there is a deviati on from health, but strives to live as
usually as possible in spite of these limitations. To t he extent that parents want
to demonstrate the normalcy of their ch ild, they may seek out experiences and
situations to emphasize that normalcy. Parents may manipula te the environment
and place their children in normal sit uations, similar to Wolfensberger’s
conceptualization of normalization. S ubsequently, Deatrick et al. (1999) revised
the key elements to include a fifth elemen t: (e) the incorporation of treatment
regimens consistent with normalcy. T hese may or may not be in compliance with
the recommended treatment regimen.
Recently, consistent with the self-ident ity focus of normalization, Morse,
Wilson, & Penrod (2000) suggested, “norma lization is the ident ification with or
adoption of the norms of a re ference group.” The emphasis in this definition is
the comparison and identificati on of the self wit h others. Rather than assuming
that the group of reference is “normal” others, Morse et al. (2000) proposed that
individuals identify the targeted refer ence group and then seek to enhance their
similarities and de-emphasize their differenc es to the targeted reference group.

13There may be a fit between Morse et al.’s (2000) and Knafl & Deatrick’s
(1986) conceptualizations of normalization. One element from Knafl & Deatrick’s
(1986) definition is that the individual defines life as basically normal while
another element is that individual s engage in behavior that demonstrates
normalcy to others. One’ s definition of normal and t he group to whom normalcy
is demonstrated may depend on the targeted reference group as described by
Morse et al. (2000).
There are authors who use the term “normalization” to indicate
approximation of a behavior to the norm rat her than using either of the identified
conceptualizations of Deatrick et al. (1999) or Wolfensberger (1977). For
instance, Haase & Rostad ( 1994) used the term “normalizing” in the context of
children normalizing family relationships afte r completion of cancer therapy. This
use of the term, while representing a retu rn to normal or as normal as possible,
doesn’t fit (as described in their articl e) with all of the elements described by
Knafl & Deatrick (1986) or Wolfensberger (1972). It may be that, with more
information, the given example fits the nor malization criteria delineated by Knafl
& Deatrick (1986). However, Haase and Rostad did not reference a framework
for normalization. As another example, Witte & de Ridder (1999) refer to
normalization of feelings. This use of the te rm refers to more of a “validation” of
feelings. This differs from the constr uct of normalization as discussed in this
paper. Application of the term “normaliz ation,” as in these examples, does not
contribute to the development of the construct.

14Study Definition. The definitions proposed by Knafl & Deatrick (1986) and
Deatrick et al. (1999) served as the primary conceptualizations for this research
and for the developed normalizat ion measure. This defin ition is consistent with
recent works about normalization. C onsonant with Knafl & Deatrick’s work,
normalization was conceptualized as an adapt ation process consisting of the use
of cognitive and behavioral coping strategies employed to minimize the impact of
illness and maintain typical life activities . Adaptation has been conceptualized in
a variety of ways, and, similar to no rmalization, has been viewed as both a
process and outcome (Kim & Kollak, 1999). For this proposal, adaptation is
defined as the outcome of an individual’s adjustment to the env ironment through
complex cognitive, emotional, physiolog ical, and behavioral interactions over
time (Pitel, 1963; Scott, O berst & Dropkin, 1980).
Normalization is an adaptation process resulting in the preservation of
normalcy, social interaction, and self-ident ification with others. Normalization is
one mode of adaptation. Individuals may choose other modes of adaptation not
involving the desire for normalcy. For instance, an individual may adapt to illness by surrendering to the sick body as described by Charmaz (1995). Through surrendering, the individual no longer struggles against the illness, doesn’t
redefine the illness, and acc epts the progressing disease. This is supported by
Gagliardi (1991) who described the reso lution process experienced by families
who have a child with Duchenne’s muscula r dystrophy. The families experienced
disillusionment with the world when faced with the impossibility of a normal life.
The families worked through the dis ease, accepted physical changes, and

15reached resolution through accepting the di sability. This is a process of
adaptation, different from normalization. Thus, adaptation and normalization are
not one and the same. Normalizati on is one mode of adaptation.
Normalization is a dynamic process occurring over time in which there is a
continuous interaction between what is perceived to be normal by the identified
unit (individual, couple, or family) and w hat characteristics of normal can be
attained or maintained, thereby shaping t he perceptions of others. Of particular
importance is the premise that the individual, couple, or family defines
normalization. The definition of norma l held by others (specifically health
professionals) may not match with t he individual’s self- perception or own
definition. For example, Robinson (1993) described a woman who wanted a
wheelchair so she could go shopping. Her sense of going shopping as a usual
activity was more import ant to her than appearing physi cally normal to others.
There are temporal aspects to normalizati on, perceptual (or cognitive) aspects to
normalization, and behavioral aspects to no rmalization, thus creating a dynamic,
cognitive-behavioral process.

Attributes
Universality.
Research about normalization has illustrated the universality
of the concept. Normalization is evi dent among persons coping with a chronic
illness regardless of the disease type. Research has identified normalization as
a dominant mode of adaptation among indi viduals and/or families experiencing

16the following conditions: AI DS; amputation; arthritis; asthma; cancer; cerebral
palsy; coronary artery bypass graft; cystic fibrosis; diabetes; Duchene’s muscular
dystrophy; dwarfism; end-stage renal failu re; gastrostomy; heart transplantation;
HIV positive; inflammatory bowel disease; leukemia; low birth weight infants in an
ICU setting; lung transplantation; mult iple sclerosis; myelomeningocele;
osteogenesis imperfecta; physical disabili ty; post-polio syndrome; precocious
puberty; Retts syndrome; spina bifida; spin al cord injury; and Turner’s syndrome
(see Appendix A for a summary of the research).
While normalization has been identified across chronic illnesses, it is
unclear whether normalization is a universal concept culturally. The research to
date on normalization has focused primarily on American and European
Caucasian individuals. Anderson (1986) proposed that normalization might be a
western ideal. In a study of Chinese families living in Canada, Anderson (1986)
identified that, in these families, concern for the future of the chronically ill child is
the focus of concern, not the maintenance of normal. These families viewed their
children as not normal and did not treat t he children as if they were normal but
emphasized the child’s happiness. Later Anderson (1989) acknowledged that
the material circumstances for Chinese immigrants in Canada rather than simply
their cultural background might complicate and influence the ways that they cope
with a chronically ill child. In any case , it appears that normalization may not be
universal within all sociocultural contexts.

17Cognitive and Behavioral Stra tegies of Normalization. Cognitive and
behavioral strategies are attributes of nor malization. Behavioral strategies of
normalization consist of ways in which ch ronically ill persons carry on life as
usual or engage in activities similar to their pre-diagnosis life. Additionally,
extraordinary efforts are m ade to maintain a normal app earance. For example,
chronically ill individuals may hide their physical pain (Wiener, 1975). Chronically
ill individuals may pace themselves and may choose to skip ‘trivial’ activities in
order to maintain participation in more valued activities (Royer, 1995; Wiener,
1975). Avoiding potentially embarrassing si tuations related to physical aspects
of their illness is another behavioral stra tegy. For example, one woman doesn't
shop when her hands are swollen because she feels people will look at her
(Royer, 1995). Limiting contact to persons who are in similar circumstances is a
behavioral tactic. People who socialize with others similar to themselves may
find understanding and respect for their situat ion. Another behavioral strategy is
covering up. In this strategy, indi viduals attempt to maintain a normal
appearance to others. For example, an indi vidual using this strategy would be
loath to use assistive devices such as canes or might not take medication in
public (Dewis, 1989; Guthrie & Castelnu ovo, 2001; Hilton, 1996; Wiener, 1975;
Robinson, 1993; Royer, 1995).
Cognitive strategies are also a part of the normalization process. Cognitive
strategies include minimizing the struggl es and adjustment that affect an ill
individual's life. This might be accomplis hed by viewing the illness as common or
inconsequential within their life (Knaf l & Deatrick 1986; Robinson, 1993; Hilton,

181996, Royer, 1995) or by mini mizing the role of treatment regimens in their daily
routine (Deatrick et al., 1999; Royer, 1995) . A way to minimize the role of
treatment regimens is to view treatment as a part of staying healthy, similar to
brushing one’s teeth every day (Rehm & Franck, 2000). Other cognitive
strategies include being flexible (Hilton, 1996) and being able to balance demands (Wiener, 1975). Normalizing individual s frequently frame their situation
in an optimistic manner. Statements such as “it could be worse” or “the glass is
half full rather than half empty” are examples of this optimistic view (Hilton, 1996;
Royer, 1995). The strategy of redefining normal to be consist ent with the present
level of functioning also results in indi viduals being able to maintain normalcy
(Wiener, 1975, Royer, 1995). This often re quires a reordering of priorities and
values based upon the level of functioning.
Often cognitive and behavioral strategies are intertwined. Individuals may
seek out information that validates thei r personal experience from support groups
or other avenues of gaining information (M iles, 1979; Royer, 1995). However,
some individuals may view their handling of the illness as superior to other
individuals with the same illness. Once the individuals obtain the needed
information, they no longer attend meeti ngs. On the other hand, they may
actually seek out individuals who have similar diagnoses to them but are worse
off in their ability to manage the illness (Royer, 1995). This is called making a
downward social comparison (Festinger, 1954).
These are some of the behavioral and cognitive normalization strategies
utilized by chronically ill individuals. Individuals may use a variety of these

19strategies but do not need to employ al l of these tactics in order to be
normalizing. These strategies yield information about the types of items to
include on the proposed scale of normalization.
Some chronic illnesses may result in stigma-related stressors. Coping
strategies used to cope with stigma-rela ted stressors may be distinguished as
voluntary coping or involuntary respons es (Miller, 2001). Involuntary
responses, whether conscious or unconsci ous, are not considered to be coping
strategies. Coping strategies are conscious , voluntary efforts to control stressful
situations or events. Coping effort s may be targeted at gaining primary or
secondary control over the situation or event. Primary control is a sense of
personal control over the env ironment and one’s reactions. Coping efforts that
result in primary control include probl em solving and emotion regulation.
Secondary control is aimed at adapting to t he situation. Coping efforts resulting
in secondary control include strategi es to change the way one feels about the
stressful situation such as positive thin king and cognitive restructuring (Compas
et al, 2001).
Voluntary coping responses to stigma include disengagement tactics and
engagement strategies (Miller, 2001). T he coping strategies of normalization
include some disengagement tactics such as minimization and selective
association with chronically ill others. T he coping strategies of normalization also
include some engagement strategies su ch as problem solving and emotion
regulation (primary control efforts), c ognitive restructuring, distraction, and
acceptance (secondary control efforts).

20Adaptive vs. Maladaptive . Normalization is often viewed as positive and
desirable (Dewis, 1989; Knafl, et al., in press; Wolfen sberger, 1972). Some
researchers conceptualize normalization as a coping strategy that should be
supported and encouraged particularly when nur ses identify that a family is
experiencing difficulty coping with chr onic illness (Knafl et al., in press).
Evidence for this premise comes from Knafl, Breitmayer, Gallo, & Zoeller’s (1995) work on the identific ation of family management styles used by parents
with a chronically ill child. The thrivi ng management style in cluded normalization
as a coping strategy and was found to be the most positive, beneficial style.
However, while normalization is positiv e and desirable fo r many, there are
conditions under which normalization ceases to be an effective and beneficial strategy for adapting to chronic illness. The following discussion addresses the
foundation for the proposed framework (see Figure 1 on the next page for the
proposed conceptual framework). First, the antecedents to normalization will be
presented. Next, factors influenci ng normalization will be discussed.
Subsequently, the adaptive and maladapt ive outcomes of normalization will be
identified. The proposed framework for normalizati on and its place within a
chronic illness model will be described.

21

Figure 1: Proposed Conceptual Framework

Antecedents

The proposed conceptual framewor k was based upon the normalization
research to date. Antecedents to normalization include a change in the
individual’s health status and a desire normalcy.
Change in Health Status.
Normalization is an adaptive response to
potential stigmatization. Chronic illness is a source of potential stigmatization.
Thus, it is reasonable that an antecedent to normalization is the existence of
deviance through change in health stat us (Deatrick et al, 1999; Hilton, 1996;
Knafl & Deatrick, 1986; Miles, 1979; Rehm & Franck, 2000; Robinson, 1993;
Royer, 1995; Wiener, 1975). The change in health status is the impetus for
coping and adaptation. Often a change in heal th status requires the individual to Antecedents

Change in Health & Desire for Normalcy Normalization Outcomes
↑↓ Quality of Life
↑↓ Adherence to Treatment Regimen
↑↓ Resource Utilization
Maintenance of Social Ties
Influences
Social Support: Family and Friends
Health Professionals
Perceived Control: Routine
Mastery of Disease Management
Disease Intrusiveness: Illness Trajectory Treatment Regimen

22re-evaluate their abilities and perhaps lower their expectations based upon a new
level of functioning (Wiener, 1975).
Desire for Normalcy.
Another antecedent is the perception by the individual
or family that normalcy is to be valued. For normalization, the individual or family
must buy into the desire to be normal and to strive for normalcy versus acquiring
a sick role or the role of an invalid. No rmalization is often considered a Western,
middle class Caucasian ideal, not necessari ly embraced by all cultures or all
social contexts (Anderson, 1986). For ex ample, not all families view ill children
from a normalcy framework (Anderson, 1986; Gravelle, 1997). The desire for
normalcy is not a focus for all indivi duals and families experiencing chronic
illness.

Influences
According to the proposed concept ual framework, the factors that
influence normalization include social su pport from family , friends, and health
professionals; perceived c ontrol personally, socially and environmentally; and the
intrusiveness of the disease in terms of the illness trajectory and treatment
regimen. The following is a discussion of these influences.
Social Support.
The literature supports t he idea that families who
normalize with ease describe having social s upport. Social support affects health
status and quality of life th rough its buffering effects on physical an d emotional

23stress (Seeman, 1996; St ewart & Tilden, 1995). Normalization is influenced by
the congruency of families’ views (Miles, 1979; Hilton, 1996). Family members
who share the same view, agree how to handle illness situations, and agree how
to cope with the illness, normalize with less diffi culty. Also, fam ilies that are well
established in their neighborhoods have been found more likely to normalize than those families who have recently mo ved to a new neighborhood and/or live
distant from relatives (Miles, 1979). Fa milies who have social support and share
similar views may find that relationships strengthen in working toward a common
goal due to their shared views, shared goals, and the existence of previous
bonds.
Obtaining social support is not alwa ys easy for individuals who normalize.
Some health professionals do not share the philosophy that normalization is
positive and desirable. Pa rents of hospitalized children have stated they felt
criticized when they attempted to maintain the child’s normal daily routine (such
as bedtime) and set limits as they woul d at home (Robinson, 1993). Health
professionals may impede normalization attempts in this way.
According to Robinson (1993), some health professionals equate
normalization with denial, which many health professions believe to be
maladaptive. It follows that some health professionals, in coming in contact with
normalizing individuals who are not follo wing recommended treatment regimens,
would conclude that the individual was exhibiting denial. However, individuals
and families who are normalizing generally acknowledge the illness’s existence
and seriousness (Hilton, 1996; Knafl & D eatrick, 1986). This disputes the

24existence of denial, per se, but underscores the importance of health care
professionals being knowl edgeable about normalization.
Chronically ill individuals and families require support and resources in order
to cope successfully with chronic illness. An individual’s ability to receive support
from others may also be impeded by t he normalization process. Some
individuals may choose not to belong to organizations designed to support them
in coping with their disease processes (Hilton, 1996). They disassociate from
similar others in order to identify and interact with norma l others. In doing this,
these individuals may not receive informa tion and support that would be valuable
to coping with their condition.
Normalization may impede an individual from receiving support in another
way. Individuals who are successfully normalizing may appear to health professionals as so normal that certai n services and resources are not offered
(Robinson, 1993). These individuals fail to emit cues that they need help from
health professionals or others with whom t hey come in contact. In these ways,
persons who normalize may find difficulty accessing social support resources.
Health professionals need to be aware t hat while an individual or family appears
successful in their efforts to normalize, there may be information or services that
could meet less visible needs.

Perceived Control.
Control is not identified as part of the definition of
normalization but is a definite thread thr oughout the normalization literature. In
the normalization literature, individuals and families identify the maintenance of a

25routine as paramount in attempting to live as normally as possible. Families and
individuals often view the maintenance of a “normal” family routine as pivotal to
successful normalization (Cohen, 1995; Deatrick, 1988; Hilton, 1996; Hilton,
Crawford & Tarko, 2000; Jerret & Cost ello, 1996; Robinson, 1993; Seppanen,
Kyngas, & Nikkonen, 1999). This may fall under two of the elements identified by
Knafl & Deatrick (1986): defining life as basically normal and engaging in
behavior that demonstrates normalcy to others. Inherent in the ability to maintain
a normal routine is the issue of controllabilit y. In fact, in the extreme – e.g. those
with obsessive-compulsive disorders – es tablishing a routine is done for the
purpose of feeling in control and, thus, for reducing anxiety.
Jerret & Costello (1996) equated “being in control” to normalization for
parents managing their child’s asthma. Gerhardt & Brieskorn-Zinke (1986)
emphasized mastery, which can be argued as the same as a sense of control
(Wallston, 1991). Robinson (1993), Cla rke-Steffen (1997) and Bossert, Holaday,
Harkins, & Turner-Henson (1990) refer to individuals controlling the flow of
information. Dewis (1989) also emphasized control in maintaining
independence. Because control is a str ong theme in this lit erature, perceived
control is a probable influence of normalization.
Perceived control is “the belief that one can determine one’s own internal
states and behavior, influence one’s env ironment and/or bring about desired
outcomes” (Wallston, 1991, p. 5). This belief may or may not be rooted in reality.
A person’s sense of control over any one aspect of their life may change over
time. In the health arena, positive and negative effects of control have been

26associated with health outcomes in chr onically ill adults (Thompson & Collins,
1995). In general, those who maintain a s ense of control will c ope with situations
better, experiencing less depression and an xiety than those individuals who do
not feel a sense of control (Affleck, Tennen, & Gershman, 1985). However,
some evidence suggests that individuals who initially beli eve they can exert
control but are then unsuccessful may exhibit poorer health outcomes
(Thompson & Collins, 1995). Reich & Zaut ra (1990) conducted an intervention
study designed to increase older adults’ per ceptions of control. Those adults
who scored high in internal locus of control demonstrated benefits from the
intervention while those adults whose inte rnal locus of control was low did not
benefit from the intervention. Perceptions of perceived control may interact with
the belief about the locus of influence t hus affecting the outcomes of having a
sense of control. In other words, if perceived contro l is attributed to external
influences, the impact of having mo re control will be minimized.
Within normalization, control of social interactions involves manipulation of
the individual’s environment, behavio r, and appearance, resulting in the
maintenance of normalcy. Charmaz (1995) proposes that when control over the
illness ceases there is surrender to the sick body and the individual relinquishes
control over his or her own body. There is acceptance of the r eality of the illness,
not defeat. This relinquishing of control resu lts in a view of the ill body as part of
the self. Hence, such an individu al would no longer be normalizing.

27Disease Intrusiveness. Disease intrusiveness refers to the amount of
lifestyle disruption experienced by indivi duals as a result of illness effects,
treatment effects, and treat ment requirements (Devins et al., 2001). Disease
intrusiveness affects subjecti ve well-being and health related quality of life.
Physical aspects of the disease proce ss and the treatment regimen may present
barriers or threats to normaliz ation. There is support in the literat ure that the
trajectory of the illness may lead to a point where normalization ceases to be
beneficial and results in a lowered quality of life. The length of time since
diagnosis may impact normalization in te rms of illness trajectory and because
normalization sustained long-term can depl ete energy. The more intrusive the
illness, or the treatment, the more di fficult normalization becomes (Deatrick,
1988; Gagliardi, 1991; Hilton, 1996). As an ill child grows, the ability to manage
the child and the illness becomes more diffi cult due to the increased weight of the
child and the development of further physical cons equences related to the
trajectory of the disease (Deatrick, 1988; Sawyer, 1992; Gravelle, 1997). The
reverse is true as well. The intrusiv eness of the treatment regimen upon normal
life activities may be more pronounc ed during infancy or toddlerhood as
supported by Hatton et al.’s (1995) research of parents caring for an infant or
toddler with diabetes. From the adult perspective, an ill parent may find that
having young children taxes the energy re sources of the individual and their
ability to normalize (Hilton, 1996). Normaliz ing in the face of such disease or
regimen intrusiveness results in deplet ed energy that ma y be a precious
commodity for someone who is chronica lly ill (Wiener, 1975; Royer, 1995). In

28these cases, normalization promotion may not lead to an optimum quality of life
or be perceived as beneficial.

Outcomes
The adaptive outcomes of normalization are a positive quality of life,
mastery of treatment regi mens, increased resource utilization and maintenance
of social ties. Maladaptive outco mes include a negative quality of life,
noncompliance with treatment regimens, and lack of resource utilization.
Quality of Life
. There is support from the literat ure that normalization can be
positive and beneficial. Persons who normalize often reframe situations
positively and are hopeful about their life (Rob inson, 1993). Theoretically, this
hope or sense of optimism results in a pos itive quality of life and allows them to
cope with adversity and to focus on wellnes s and abilities, thus avoiding grief and
depression. Robinson (1993) contended, af ter examining the benefits and costs
of normalization in adults and children wit h chronic illness, that the benefits of
hope outweighed the costs.
Quality of life is a subjective concept that is based on the value an individual
attaches to life meaning. Essentially, qualit y of life is one’s sense of well-being or
satisfaction with life (Gulick, 1997). Well- being includes one’s evaluation of life
domains such as marriage and family, work , health, education, standard of living,
and other domains. In other words, it addresses physical, psychological, and
social components (Campbell, 1981). The quality of life goal for individuals with

29chronic illness often involves reaching an optimal level of functioning at the
highest level of independence (Lubkin, 1986). Over time, individuals with chronic
conditions continue to navigate the health care system with the goal of obtaining
care essential for an a dequate quality of life.
The costs of normalization may lead to a lowered quality of life for some
individuals and families. To the ext ent that normalization can cause energy
depletion, lack of support, and weakening of family bonds, individuals and
families using normalization may experienc e a decreased quality of life (Deatrick,
Knafl, & Walsh, 1988; Hilton, 1996; Robins on, 1993, Royer, 1995; Wiener, 1975).
Mastery
. Normalization may also result in mastery of treatment regimens
(Gerhardt & Brieskorn-Zinke, 1986; Jerret & Co stello, 1996). This is the flip side
of noncompliance. Normalization ma y result in increased compliance and
confidence with treatment regimens and managing their illness (Gerhardt &
Brieskorn-Zinke, 1986; Hilton, 1996; Jerre t & Costello, 1996; Rehm & Franck,
2000). No conclusions can be drawn to pr edict for whom normalization results in
compliance and for whom normalization resu lts in noncompliance. There is a
possible relationship between the concept of perceived control and compliance
(Jerret & Costello, 1996). Compliance may be more likely and more easily attained in individuals who have a greater sense of control. Control has been
discussed as an influence on normaliz ation in a previous section.

30Noncompliance. Some individuals and families that normalize present to
health professionals as being noncomplia nt with treatment regimens (Anderson,
1986; Deatrick et al, 1999; Miles, 1979). This occurs because, when individuals
and families normalize, they incorporate tr eatment regimens into their life by
minimizing the disruption of normal life pa tterns (Deatrick et al., 1999). In order
to merge the treatment regi mens with normal life pattern s, some individuals and
families alter the regimen. It may be argued that health professionals who are
knowledgeable about the prom otion of normalization w ould be able to assist
individuals and families to integrate a treatm ent regimen into normal life patterns.
However, some treatment regimens are so intrusive that the gap between the
individual’s or families’ acceptance of a “revised normal” and the requirements of
the treatment regimen is t oo broad. The individual or family may choose simply
to be noncompliant with the recommended tr eatment regimen or may reject the
dream of normalcy and take on another role such as the sick role or the role of
an invalid. In this case, normalization ceases to be an effective strategy, thus
leading to a hastening of the illness traj ectory as a result of non-compliance with
the treatment regimen.
Resource Utilization.
As discussed earlier, some chronically ill individuals
seek out information from health profe ssionals and support groups (Miles, 1979;
Royer, 1995). This seeking of informa tion results in increased resource
utilization. Alternat ively, some individuals engage in avoidance strategies where
they limit contact with similar others (Royer, 1995). They do not attend support

31groups or seek information about their illness, resulting in decreased resource
utilization.
Maintenance of Social Ties.
Some families living with chronic illness
experience a strengthening of family bonds (Dashiff, 1993; Haase & Rostad, 1994; Hilton, 1996). The experience of coping and managing chronic illness successfully as a family brought family members closer toget her. This may have
been enhanced by the presence of working toward a common goal.
In addition to receiving social s upport, individuals and families that
normalize are likely to maintain social ti es, a positive outcome in and of itself.
This maintenance of social ties is often a priority for individuals and families who
normalize (Dewis, 1989; Rehm & Franck, 2000). This includes a child’s
participation in school, including academic and extracurricular activities (Rehm &
Franck, 2000).
Explanation for the Outc omes of Normalization.
Goffman (1963)
emphasized the role of illness visibili ty in his work about stigma. He
differentiated the responses of individuals who were discredited by visible stigma
versus responses of individuals who were discreditable by a stigma that may be
concealed and covered. The visibility of chronic illness may influence the choice
to normalize or the ability to normalize successfully. Response to stigma-related stressors depends upon the individual’s appraisal of the significance of the
stressor and whether the individual has the resources to cope with the stressor

32(Miller 2001). Thus, for some, the vi sibility of the illness may not impact
normalization. In research conducted by Deatrick (1988) and Miles (1979), the
illness visibility and duration did not impact normalization. In fact, Miles (1979)
found that some of the most visibly di sabled subjects used normalization as a
coping strategy. The previous exampl e of the woman who wanted a wheelchair
so she could shop also disputes the infl uence of visibility on normalization. This
illustrates the importance of the self-definiti on of normal. This example also
demonstrates that individuals may normaliz e on different dimensions (physical,
social, personal identity). The woman s hopper was apparently more interested in
normalizing her social activities than in normalizing her physical appearance to
others.
Examination of the liter ature for trends related to illness visibility yielded
no relationship between the choice to normalize and the success of normalization
except in two instances. Among individual s with less visible illnesses, it was
more difficult to determine how much information to disclose and to whom
(Bossert et al., 1990). Rehm & Franck’ s (2000) research on children with
HIV/AIDs supports the difficulty parents ex perienced in knowing what to disclose,
when to disclose, and to whom. Consist ent with Goffman’s (1963) framework,
these individuals are discreditable but can pass as normal, and thus avoid
stigma, until they disclose. Alternatively, visibility of treatment effects impacted
the normal husband-wife relationship in women diagnosed with breast cancer
(Hilton, 1996). In this case , the visibility of the trea tment effects discredits the
individual thus creating stigma. A wom an may be able to “pass” to outsiders,

33with the use of creative clothi ng or prostheses. However, she cannot “pass” with
her husband due to the intimacy of the relati onship. “Passing” is a way to deal
with stigma by hiding the stigmatizing characteristic and presenting a normal
appearance to others.
The analysis of the normalization litera ture based upon illness visibility was
complicated by the lack of detail in certai n research descriptions. For instance, a
study examining coping in adults with mu ltiple sclerosis did not describe the
sample well enough to determine the degree of illness visibility. Individuals with
multiple sclerosis may exhibit no outside si gns of illness or the signs may be very
subtle. On the other hand, these i ndividuals may be very disabled. Thus,
knowing the diagnosis is not enough informati on to determine the visibility of the
illness. As one can see, bringing norma lization into the quantitative arena may
help answer some of these questions. The proposed conceptual framework
identifies some of the fact ors that may moderate th e outcomes of normalization
and is described next.

Proposed Conceptual Framework
While the current literature base has developed the concept of normalization
in terms of behavioral strategies used fo r normalization as well as the influences
and benefits and costs that may accompany normalization, the interaction of
normalization influences and their predictabl e relationship to one another and the
outcomes has yet to be established. A proposed conceptual framework based
on the current literature base follows. (See Figure 1 on page 21 for a diagram of

34the proposed conceptual framew ork.) Further research is needed to clarify these
relationships.
Normalization is conceptualized as an adaptive, long-term process in which
cognitive and behavioral responses change based on transitional situations that
arise such as those associated with an alteration in condition or a change in
social network. This conceptualizati on is consistent with Wiener’s (1975)
description of re-normalizing. Wiener asse rts that, over time, individuals alter
their view of what is normal based on t he constraints imposed by the chronic
condition. According to Wi ener, this re-normalization ma y result in disruption of
previously used strategies to maintain a specific level of “normal.” Thus,
normalization may be viewed as an ov erall adaptation mode comprised of
several cognitive and behavioral coping strategies: acknowledgment of the
seriousness of the disease condition; deni al of disease impact; minimization of
abnormal appearances, interactions, and routines; and incorporation of a
treatment regimen into normal daily li fe. Normalization may occur at the
individual, familial, or group level and ma y involve physical, social, or personal
domains.
As supported by the literat ure, social support may affect the normalization
process (Dashiff, 1993; Haase & Rostad, 1994; Hilton, 1996; Miles, 1979). This
influence may result in positive or negative e ffects. It is theorized that social
support, the quality of social interacti ons, the degree of perce ived control over
social interactions, and disease or tr eatment intrusivene ss all affect the
normalization process and the outcomes of that process. A possible outcome of

35normalization is altered quality of life. The degree of perceived control over
social interactions, physical functi oning and the environm ent may affect
normalization and, subsequently, quality of lif e. Individuals with less perceived
control in a general sense may have more difficulty maintaining social interactions, mastering treatment regimens and normalizing, resulting in poorer
quality of life. Indivi duals with more perceived control in general might have
more success normalizing, more success wit h integration of tr eatment regimens,
and more success maintaining social ties, thus contributing to an increased quality of life. However, over time, t hese positive effects of normalization may
diminish as the energy costs rais e and affect individuals physically,
psychologically, and socially.
A metastudy of the chronic illnes s literature has gener ated a model to
explain the conflicting behaviors and out comes observed in persons who are
chronically ill. The concept of normalizati on fits within this model. The model is
discussed next.
The Shifting Perspectives Model.
The Shifting Perspectives Model,
developed from a metasynthes is of 292 qualitative studies pertaining to chronic
illness, is a model of chronic illness w here the illness experi ence is described as
a continually shifting process between two perspectives of the individual
(Paterson, 2001). One perspective is ”illness in the foreground” and the other
perspective is “wellness in the foregr ound”. These perspectives determine how
individuals cope with chronic illness. The individual’s perceptio n of reality and its

36context change, so too may the perspective of the individual, particularly if there
is a threat to control. Disease pr ogression, stigma-related stressors, and
interactions with others focusing on depende nce can threaten control (Paterson,
2001).
In the illness in the foreground perspective, the emphasis is on sickness,
loss, suffering and the burden of the illness. Individuals using this perspective
identify with the sick role. The positive aspect of this perspective is that
individuals can conserve energy and resources. The individual can focus on learning about their illness and can obtain needed attention and care from others.
On the negative side, individuals of this perspective can feel overwhelmed, can
have difficulty fulfilling their pre-diagnosis roles and find it hard to attend to the
needs of others (Paterson, 2001).
In the wellness in the foreground pers pective, chronically ill individuals
distance themselves from illness, describe their health as good despite
decreased physical functioning, and attemp t to find harmony between their self-
identify and the identity as a result of the disease. The focus is on what is
possible and normal. In this perspective , the individual accepts the illness while
minimizing its significance and impact (Pat erson, 2001). The identified cognitive
and behavioral tactics in this perspective are consistent with normalization.
Persons who normalize fit into this well ness in the foreground perspective. It can
be proposed that adoption of the sick role is the polar opposite of normalization,
similar to this model where illness in t he foreground is the opposite of wellness in
the foreground.

37Sick Role Adoption. Normalizing is a process w here individuals identify with
normal others and seek to engage in typical activities. However, some individuals choose, instead, to identify with sick persons. This is referred to as adopting the sick role. In essence, adopti on of the sick role is the polar opposite
of normalization. In 1951, Talcott Parsons coined the term “sick role” and
developed a model describing the phenomen on. In this model, individuals
identify with being ill and take on that social role. Four main features comprise
the sick role: (1) the sick person is ex empted from the no rmal responsibilities
consistent with their usual role; (2 ) the sick person is exempted from
responsibility for the illness and has a right to be cared for – the responsibility is
viewed as the physician’s responsibility; (3) the ill individuals is in need of the
expertise of a physician and is helpless; and (4) the individual has an obligation
to become well. Acknowledging this definition, Brown & Rawlinson (1975)
developed a sick role measure based on t he determination that acceptance of
the sick role is consistent with how simila r individuals perceive themselves to be
with sick persons in the domains of worthiness, power, activity and independence.
Blackwell (1992) identified seven f eatures of sick role behavior and
management strategies for the behaviors. In addition to helplessness and the
emphasis on physician responsibility, Bl ackwell notes that individuals may
receive environmental rewards (care, att ention) for the sick role and may exhibit
interpersonal behaviors that sustain the sick role. Often the disability
demonstrated by individuals is dispropor tionate to the disease process.

38Interestingly, the management strategies that Blackwell ident ified for countering
the sick role behaviors include: (1) redef ining symptoms; (2) emphasis on self-
management of symptoms; (3) enhancem ent of the healthy role; and (4)
minimization of the sick role by the physician. These interventions sound very
close to normalization that supports the i dea that assuming the sick role is on the
opposite end of the conti nuum from normalization.

Assumptions
This research study was guided by the following assumptions about
normalization: normalization is viewed as predominantly a positive and desirable
adaptation process; normalizat ion is a process of interaction between cognitive
and behavioral coping strategies to mainta in the state of normalcy; normalization
is a universal phenomenon in terms of chronic disease, not illness specific; and
normalization can be measured cross-secti onally with a self report scale. These
four assumptions formed the foundat ion for the conceptualization of
normalization throughout the study.

Research Questions: Phase One
Although normalization is a universal phenomenon, not illness specific, the
purpose of this study was to develop a measure of normalization utilizing
participants diagnosed with a variety of r heumatological conditions. For phase
one of this study, the research questi on was: (1) Can relevant items be
constructed to constitute a summative measure of normalization?

39Definition of Terms

Normalization . Normalization is an adaptation mode where individuals
acknowledge the presence of illness, identif y their life as normal based upon their
view of what is typical for them , and engage in cognitive and behavioral
strategies minimizing illness impact on pr ior patterns of social interaction and/or
maintaining a usual appearance to others. It was operationalized by a self-report
rating scale constructed during this phase of the study and, later, utilized in
phase two of the study.

Research Questions: Phase Two
For phase two of this study, the research questions were the following: (1) Is
the developed normalization measure be tter described as a unidimensional
measure or a multidimensional measur e? (2) What are the psychometric
properties of the developed normalization m easure? (3) What is the relationship
between scores on the normalization meas ure and measures of the following
constructs: perceived control, disease intrusiveness, quality of life, and social
ties? (4) Are these relationships c onsistent with the proposed conceptual
framework? (5) Are there differenc es in normalization due to type of
rheumatological condition? and (6) W hat is the relationship between
normalization and the length of time since diagnosis?
Specifically, the following hypotheses were tested:

401) There is positive relationshi p between normalization and problem
focused coping.
2) There is a negative relationshi p between normalization and emotion
focused coping.
3) There is a positive relationshi p between normalization and sick role
nonacceptance.
4) There is no correlation between normalization and social desirability.
5) People with fibromyalgia score lower on normalization than people
without fibromyalgia. 6) There is a negative relationship betw een length of time since diagnosis
and normalization. 7) There is a positive relationship between perceived control and normalization.
8) There is a negative relationship between normalization and illness
intrusiveness.. 9) There is a positive relationshi p between normalization and quality of
life.
a. The variance in quality of life is explained by the linear combination
of perceived control, illness in trusiveness, and normalization.
b. When controlling for illness in trusiveness and perceived control,
normalization uniquely explains th e variance in quality of life.
10) There is a positive relationship between normalization and social ties.

41 a. The variance in social ties is explained by the linear combination of
perceived control, illness intr usiveness, and normalization.
b. When controlling for illness in trusiveness and perceived control,
normalization uniquely explains the variance in social ties.
11) Illness intrusiveness moderates t he relationship between normalization
and quality of life. a. Among people with high illness intrusiveness, the relationship
between normalization and quality of life is negative.
b. Among people with low illness intrusiveness, the relationship
between normalization and qualit y of life is positive.
12) Perceived control moderates the relationship between normalization
and quality of life.
a. Among people with high perceived control, t he relationship between
normalization and quality of life is positive.
b. Among people with low perceived control, the relationship between
normalization and quality of life is negative.

42CHAPTER III

METHODOLOGY: PHASE ONE

Research Design
The study consisted of two phases. Phase one focused on developing and
refining a normalization assessment m easure. The initial measure was
administered to 15 individuals in focu s groups of 3-4 as a pilot study.
Refinements were made based upon revelations from the pilot study.

Research Setting
The research setting was a rheumatology pr actice in the south plains region
of Texas. A local rheumatologist office a llowed access to clients. The practice is
located in a city with an approximate populat ion of 200,000. Based upon census
statistics from 2000, the population of t he city is 49% male and 51% female.
Adults 21 years and over comprise 67% of the population. Si xty-one percent of
the city’s population is white. Persons of Hispanic or Latino descent comprise
27% of the city’s population. The re maining population is African American,
American Indian, or Asian (Areaconnect, 2002).

43Sample

Criteria for Sample Selection. The sample selected for both phases
consisted of adult individuals diagnos ed with rheumatoid arthritis, lupus,
osteoarthritis, or fibromyalgia. These conditions were selected because: (1) individuals experiencing arthritis have been studied previously in the
normalization literature; (2) these particular chronic illn esses have variability in
the range of symptoms; and (3 ) individuals with these conditions were readily
accessible. While there are many chroni c illnesses meeting the above criteria,
these rheumatology conditions offered vari ability of disability, yet all of the
identified conditions exhibit musculo skeletal involvement and pain.
Fibromyalgia is a rheumatological c ondition of unknown etiology where the
individual experiences chr onic widespread pain. In particular, the individual
complains of musculoskeletal aching and sti ffness in multiple tender points.
Approximately 2% of the U.S. populatio n is diagnosed with fibromyalgia, with
diagnosis occurring seven times more frequently in women than men (American
College of Rheumatology, 2002). No current cure exists. Among individuals with
fibromyalgia, the disability rate may be as high as 44% (Arthritis Foundation,
2002). Rheumatoid arthritis (RA) is an in flammatory condition also of unknown
etiology that results in ch ronic pain, stiffness, swelli ng and loss of function in the
joints. More than 2 million Americans hav e rheumatoid arthritis, with 75% being
women. Treatment is aim ed at preservation of functi on and prevention of joint

44deformity through the use of pharmacologi c intervention (American College of
Rheumatology, 2002). Osteoarthritis (OA) is a degenerativ e joint disease that has symptoms
similar to rheumatoid arthritis. Osteoar thritis affects 21 million Americans and is
the most common type of arthritis. P harmacologic intervention can help relieve
pain and improve joint function (Ame rican College of Rheumatology, 2002).
Systemic Lupus Erythematosus (SLE) is a chronic infla mmatory condition
that results from an abnormality of t he immune system. While lupus affects
many bodily systems, arthriti s in one or more joints is commonly observed. Anti-
inflammatory and immunosuppressive m edications may be helpful during the
course of this condition (Ameri can College of Rheumatology, 2002).

Criteria for Inclusion.
The criteria for inclusion in the study were: English
speaking adult 18 years or older, and diagnosed with on e of the four
rheumatological illnesses greater than three months. This 3-month window
allowed time for pharmacologic interventi on. Criteria for exclusion included
individuals with dementia and indivi duals with terminal illnesses.
Due to the variability of incidence rates for the four identif ied conditions, it
was not expected that the sample di stribution among the diagnoses would be
equal or even approximately equal. The sample was expected to have more
women than men given that several of the conditions are more common in
women than men.

45Nature and Size of the Sample. Adult English speaking men and women
were recruited for participation in this st udy. Because the emphas is of this study
was to develop and validate a measure, conv ersion of the instrument into other
languages was not prudent at this time. Furthermore, there may be cultural
differences in the conceptualization of “normal” (Anderson, 1986). Once a valid
and reliable instrument has been developed in English, future research may
address the development of a normalization measure in other languages, if
appropriate. Thus, non-Englis h speaking individuals were excluded from the
study. Fifteen individuals participated in five focus groups for phase one aimed
at obtaining feedback about the clarity of the initial ve rsion of the normalization
measure.
Participants met in groups of 3-4 peopl e and gave feedback about the initial
set of items developed for the normalizati on instrument. The individuals ranged
in age from 33 years to 65 years. A ll participants were Caucasian females
except for one participant who was a C aucasian male. Three participants
identified fibromyaligia has their primary rheumatologi cal condition, one indicated
a diagnosis of lupus while the remain ing participants were diagnosed with
rheumatoid arthritis.
Human Subjects’ Rights
. Human subjects’ rights were assured through
informed consent procedures. These pr ocedures were in compliance with
Federal government regulations establis hed in the Health Insurance Portability
and Accountability Act (HIPAA). Additio nally, the Instituti onal Review Board

46(IRB) policies and procedures of both V anderbilt University and Texas Tech
Health Science Center were followed.
The HIPAA Act of 1996 was enacted to provide two types of protection to
individuals. Title 1 of the HIPAA Act provides for health insurance reform
particularly for individuals who change or lose their jobs. Title II includes
Administrative Simplification provisions for the Department of Health and Human
Services. These provisions address t he establishment of national standards for
electronic health information systems. In addition to standards for electronic
health transactions (including claims , enrollment, eligibility, payment and
coordination of benefits), t he national standards are re quired to address privacy
and security issues (Centers for Medicare & Medicaid Services; U.S. Department
of Health and Human Services Office for Civil Rights).
For investigators conducting research , HIPAA regulations relate to the
confidentiality of medical records and information about clients. IRB policies for
both Vanderbilt University and Texas Tech Health Science Center also provide
protections for subject c onfidentiality, informed c onsent, and minimizing the
potential risks for subjects participating in the study. An IRB application was
submitted first to Vanderbilt Universi ty and then Texas Tech University for
approval of the dissertation research. Th is researcher was accountable to both
IRBs. This researcher completed the required human subject rights online
courses, tutorials and tests mandated by Vanderbilt University and Texas Tech
Health Science Center for researcher co mpliance. Additionally, the Texas Tech
Health Science Center required a HI PAA training workshop for researchers

47which was completed. The specific strategi es employed in this study to meet the
HIPAA regulations and IRB policies are described under the headings “Methods for Subject Recruitment” and “Data Collection Methods”.
Methods for Sample Recruitment.
For this study, the recruitment of subjects
complied with HIPAA protections. Afte r a waiver was obtained (Principal
Investigator’s Request to Use and Disclose Protected Health Information) from
the IRB, the cooperating r heumatologist compiled a lis t of clients from his
practice who had been diagnosed with one of the following conditions (RA, SLE,
fibromyalgia, and OA). With funds prov ided from the researcher, the physician
sent a letter to 470 clients on the list who met the inclusion criteria. The letter
explained the opportunity to participate in research being conducted by this
investigator. A preaddressed and stamped postcard accompanied the letter.
Individuals indicated whether they consented to having this researcher contact
them about participating in the study by returning t he preaddressed postcard to
the researcher. They also were a sked to give their name, address and phone
number if they indicated assent. Indivi duals who did not wish to assent did not
return the postcard. This was consistent with HIPAA and IRB guidelines. One hundred thirteen individuals returned postcards.
The researcher then contacted indi viduals by phone. The study was
described to the potential par ticipants. Interested individuals were given the
option of participating in phase one or phase two. Fo r phase one, 15 individuals
from those returning postcards were re cruited to participate in a focus group

48session. Because of scheduling difficultie s, more than one focus group session
was scheduled with smaller numbers (3-4 participants) in each group than is
typical for focus groups. This kept the group size manag eable and allowed for
changes to be made in the instrument before administration to the next group.
It was conceivable that persons in the sample would know other persons
who may meet inclusion criteria. T hus, individuals identified through this
“snowball” procedure also were asked to par ticipate in the study. In cases where
individuals advised the researcher of other individuals who may be interested in
participating, the researc her provided the informant with a letter from the
researcher and a postcard. The informant delivered the letter and postcard to
the identified possible participant, thus main taining confidentiality. As above, the
postcard provided a venue whereby the indi vidual could indicate assent for the
researcher to contact them about parti cipation in the study. An additional 14
participants were identified in this manner.
Data Collection Methods
Procedures.
Phase one of this study involved the initial development of the
normalization measure. The previous 51 studies that focused on normalization
contributed to my understanding of normaliz ation and provided the basis for the
initial set of proposed items of the normalization scale.
Experts familiar with the normalizati on literature and scale development
reviewed the items I developed for clarit y, conciseness, and relevancy. The

49experts included the members of my di ssertation committee at the time and
Kathy Knafl, Ph.D., a professor of nursi ng at Yale University. Dr. Knafl, a
medical sociologist, has published ex tensively on normalization and had agreed
to be a co-sponsor of my NRSA application back in 1998.
The dissertation committee provided exper tise in scale development and the
proposed correlates. Dr. Ken Wallston has extensive expertise in scale
development and perceived control. Dr. Nancy Wells has expertise in
quantitative research and qualit y of life. Dr. Carole A nn Bach also has expertise
with the concepts quality of life and perceived control. Her clinical area of
expertise is rehabilitation nursing where normalization is an important concept.
Dr. Peggy Thoits has expertise in dev iance, stigma, social support and had a
sociology background (the discipl inary origin of normalizat ion). Dr. Joe Hepworth
is expert in quantitative research and on stress and coping. After review by my
expert panel, the preliminary version of the normalization assessment measure
consisted of 67 items. It was this vers ion of the measure t hat was administered
to participants during focus group sessions.
Each focus group session was audiotaped and later transcribed to ensure
that all comments were accurately c aptured. At the begi nning of the group,
consent letters were handed out and read, giving ample time to answer participants’ questions. Once the cons ent forms had been signed and turned in,
the individuals were given a packet in cluding the initial version of the
normalization measure, a feedback fo rm, and a demographic form. The
feedback form allowed participants to respond to the clarity of the instrument and

50wording of the items and anything else that came to mind about the experience
of filling out the normalization measure. Individuals completed the packets
identified by a unique code number for each participant, thus maintaining
confidentiality. After all individuals had completed the packet, the researcher
asked for verbal responses to the dev eloped measure. While the written
feedback provided important information about the tool, some individuals
preferred verbal outlets. It was also t he case that something verbalized by one
individual triggered additi onal thoughts and comments in another individual, thus
yielding more feedback. The same vers ion of the normalization measure was
used with all participants; however, it was evident after the first focus group that
instructions were required on the form. Instructions were added for the later
focus groups.

RESULTS: PHASE ONE
As a result of the f eedback from the focus group par ticipants, the initial 67
item measure was trimmed down to 36 items (see Appendix B). Some initial
items were worded negativel y—e.g., “Even when I have pain, I don’t behave as if
I’m in pain”–which caused participants to have difficulty responding. The
awkwardly worded items were reworded or deleted. Some items were identified
by the focus group participants as vague wh ile other items were worded without
extremes thus encouraging participants to answer “some of the time.” Those
items were either re-wor ded or deleted from the inst rument. Additionally, the
responses initially were on a 1-4 scale r anging from “Most like me/All of the time”

51to “Most unlike me/Never.” After consul tation with my advisor, an expert on
instrument development, it was decided to change the response scale to seven
options ranging from “Not at all true for me” to “Very true for me.”

METHODOLOGY: PHASE TWO

Sample and Recruitment Procedures
Methods for Sample Recruitment.
The researcher phoned or emailed all
potential participants who had not att ended a focus group in phase one. The
study was described and individuals were asked if they wished to participate in
phase two of the study by completing a set of mailed questionnaires. Ninety-
eight individuals from thos e initially recruited for this study agreed over the
telephone to complete mailed questionnaires.
Because the desired sample size was 150, a second round of recruitment
letters were sent to 259 of Dr. Ratnoff’ s patients. The patients include in this
mailing were new patients who had not received a letter in the earlier mailing. Additionally, a second rheum atologogy practice was utilized to augment the
sample recruitment for phase two. A lar ge rheumatology office in the same town
allowed the researcher to display a si gn advertising the study in each of six
examination rooms. St amped postcards were placed below each sign.
Interested persons completed the postcar d and placed the postcard in the mail,

52or if they gave the postcar d to the nurse, the nurse put it in the outgoing mail box
at the front desk.
In order to maximize recruitment effort s, a table was also procured at a local
arthritis walk advertising the study. T he researcher passed out postcards to
individuals who were acquainted wit h someone diagnosed with one of the
identified rheumatoid condition s. Some of the individu als with one of the targeted
diagnoses, who were at the walk, opted to take packet rather than have it mailed
to their home. Fifty packets were distributed at the arthritis walk.
Of the 318 individuals contacted by these various methods, 300 agreed to
participate. The remaining 18 individuals either declined or the phone number on
the postcard was no longer valid.

Nature and Size of the Sample. A sample size of at least 150
respondents was deemed by my committee as minimally appropriate for
determining the psychometric properties of the normalization instrument. With
this sample size, an effect size (i.e., co rrelation) of 0.20 could be detected with a
.70 power and an effect size of 0.30 could be detected with a power of .95 (Polit,
1999, p. 495). Desired power was se t at .80 with alpha set at .05.
One hundred fifty two participants re turned the questionnaires to the
researcher, a 50% response rate. The phase two sample included predominantly female participants (n=116; 76.3%) while males (n=35) made up
23% of the sample. One participant di d not indicate gender. Eight percent
identified themselves as single, while 35.3% reported being married or partnered.

53Divorced and widowed participants comp rised 55.3% of the sample. The
majority of participants had only complet ed high school (47.7 %), while 4% of
participants failed to graduate from high school. A college degree had been
obtained by 17.9% of the sample and 24. 5% of subjects had attended college
without obtaining a degree. The ethnicity of participants included 89.3%
Caucasian individuals with 12. 6% of those individuals re porting a Hispanic origin;
9.3% of the sample identified themse lves as African American, and 1.4%
indicated an American Indian or other ethnic background.
Of the 152 participants, 79 individuals indicated they had been diagnosed
with rheumatoid arthritis (43% diagnosed fo r 15 years or less; range = 1 to 44
years) while 37 individuals reported a diagnosis of os teoarthritis (50% diagnosed
for 10 years or less; range = 1 to 37 year s). There were f ourteen persons who
did not specify the type of arthritis (40% diagnosed for 10 years or less; range = 0
to 46 years). Eighteen participant s were diagnosed with lupus and 21
respondents indicated fibromylagia (67% diagnosed for 10 years or less; range =
1 to 15 years) as a diagnosis (81% diagnos ed for 10 years or less; range = 1 to
29 years). Some individua ls reported more than one diagnosis, thus the sum of
diagnosed individuals by condition is great er than the number of participants.

Data Collection Methods
Procedures.
The second phase of this study used the 36-item normalization
measure developed in phase one. This measure, along with several other

54measures described subsequently, were used to examine the psychometric
properties of the normalizat ion instrument and to ex plore the relationship of
normalization to its influences and the outcomes based upon the conceptual
framework.
After contact by phone as described above, participants who indicated
assent were mailed a packet. The packet included a letter from the researcher,
the questionnaires, a demographic form, two informed consent letters and a
stamped, addressed return envelope (see Appendix B for the questionnaire).
The questionnaires and demographic forms were numbered with a unique code
in order to maintain confidentiality. For individuals who may have limited ability
to write, the researcher’s letter offe red the alternative of completing the
questionnaires with the researcher by telephone. One participant contacted the
researcher about completing the questi onnaires over the telephone. Upon
further discussion, the participant re vealed that she had a granddaughter who
she preferred to read her t he questions but she wasn’t sure this was allowed.
The researcher assured the participant t hat this would be all right. After
completion of the questionnaires, parti cipants mailed back the packet in the
addressed, stamped envelope provided. Participants kept one copy of the
consent form for their records. Four w eeks after the initial mailing to those who
assented to receiving packets, a reminder postcard was mailed (following the
recommendation of Bourque & Fielder, 1995).

55Demographic Questionnaire . A questionnaire was developed to determine
demographic and background information c oncerning the participants. The
following variables were assessed: sex; age; racial and ethnic background; type
of rheumatic condition; years since di agnosis; other diagnoses; education level;
marital status; work status; family mem bers living in the home; and age of family
members.
Normalization Measure.
Normalization was measured using the instrument
constructed in phase one of this study . See Appendix B for the items of
developed normalization measure.
Perceived Control Measures.
Perceived control was measured using two
instruments, one of which was a portion of the Rheumatoid Attitudes Index (RAI;
DeVellis & Callahan (1993) and the other was an adaptation of the Perceived
Health Competence Scale (Smith, Wallston, & Smith, 1995),
Helplessness is a lack of perceived control (Wallston, 1991). In
helplessness, individuals anticipate that their efforts will be unsuccessful. This
expectation is thought to be based upon previous life exper ience where the
individual’s efforts resulted in undesirable consequences that were uncontrollable
and unpredictable (DeVellis & Callahan, 199 3). Thus, there is a significant
negative relationship between control and helplessness.
DeVellis & Callahan (1993) developed a 5-item measure of helplessness
from the Rheumatology Attitudes Index (RAI) that can be used to assess

56perceived control in persons with a variety of rheumatological conditions. The full
RAI contains a 5-item subscale that m easures helplessness in the face of a
rheumatological condition. The origin al 15-item RAI and the RAI helplessness
subscale are correlated at .79 (DeVel lis & Callahan, 1993). The RAI is a
modification of the Arthritis Helpless ness Index both of which have demonstrated
good predictive validity in relationship to a ra nge of arthritis activity indicators that
do not rely on self report. The aut hors do acknowledge, however, that
concurrent validity of the RAI is difficult to demons trate due to t he nonexistence
of a broader general measure of helplessnes s. For this study, Cronbach’s alpha
for the helplessness subscale was .78.
A positive indicator of perceived c ontrol was also assessed using the
Perceived Medical Condition Self-Managem ent Scale (PMCSMS) developed by
my advisor, Ken Wallston. This 8-it em measure is based upon the Perceived
Health Competence Scale (Smith, Walls ton, & Smith, 1995) and is as yet
unpublished. However, Ken Wallston (per sonal communication, January, 2003)
assured me that this new condition-specific version of the PHCS should be at
least as reliable and valid as the more general health-related measure upon which it is based. The PMCSMS was c hosen for its specificity to management of
medical conditions. The PMCSMS is addresses perceived competence for management of the condition while the Pe rceived Health Competence Scale is
an intermediate level of specificity for be liefs related to one's health. For this
study, Cronbach’s alpha for the PMCSMS was .84, and the PMCSMS correlated
-.63 (p <.001) with the helplessn ess subscale of the RAI.

57The RAI and the PMCSMS were combined into an index of perceived
control by first converting the RAI and PMCSMS scores into z-scores; then the
standard score for helplessness was mu ltiplied by -1 and the two standard
scores were summed. This perceived c ontrol index was us ed for all of the
statistical analyses related to perceived control.

Illness Intrusiveness Measure. Devins et al. (2001) developed a 13-item
disease intrusiveness measure that indica tes the extent of illness and treatment
interference with life domains. Disease intrusiveness was assessed using the
Illness Intrusiveness Rating Scale (IIRS) dev eloped by Devins et al. (2001). The
IIRS consists of three subscales: relationships and personal development;
intimacy; and instrumental. Despite the s ubscale structure, the IIRS is often
computed as a total score. In a study using eight different illness conditions
(including RA, OA and SLE), reliability (alpha) coeffi cients ranged from .82 – .94
for total scale scores. Test -retest reliabilities of the total IIRS scores ranged from
.79 – .85. The instrument is stable across disease groups (Devins et al., 2001).
For this study, Cronbach’s alpha for the total IIRS was .96. Validity of the
measure has been demonstrated across pat ient populations with a wide variety
of disease characteristics, treatment factors and diagnoses. The measure has
performed as expected when examining the association of illness intrusiveness
with disease characteristics and treatment variables as well as its relationship
with subjective well-being and emotional distress, thus contributing to the
construct validity of the measure. A dditionally, discriminant validity has been

58shown by the finding that illness intrus iveness is not correlated with defensive
response styles (Devins et al., 2001).

Quality of Life Measures. Quality of life may be determined by assessing
health related quality of life and subjective well-being. Health related quality of
life encompasses, among other things, the daily limitations experienced by an
individual due to physical symptoms of di sease. Quality of life was assessed
using several instruments. Health-rela ted quality of life was measured a section
of the Multidimensional Health As sessment Questionnair e (MDHAQ) developed
by Pincus, Swearingen & Wolfe (1999) . The MDHAQ includes the Modified
Health Assessment Questionnaire, advanc ed activities of daily living, and
psychological items in the format of t he Health Assessment Questionnaire (Fries,
Spitz, Kraines & Holman, 1980), visual analog scales for pain and fatigue, and
the Rheumatology Attitudes Index (DeV ellis & Callahan, 1993). Although the
HAQ is considered a standard for health st atus assessment of individuals with
rheumatoid illness, the MDHAQ limits t he floor effects observed with the HAQ
and the modified HAQ. Test-retest reli ability using kappa scores have ranged
from 0.65 to 0.81 (p<0.001). Convergent va lidity is significant at p < 0.001 using
several other instruments (Spearman’s rho coefficients have ranged from .32 –
.75). Although the RAI is embedded within the MDHAQ, it was used as a
measure of helplessness, as discussed previously, and was not scored for use
as part of the quality of life index. Eighteen items directed toward assessing

59difficulty in carrying out activities of daily living were scored for use in the quality
of life index. Cronbach’s alpha of t hese 18 items for this study was .92.
Subjective well-being was measured usi ng the 5-item Satisfaction With Life
Scale (SWLS) developed by Diener et al . (1985). Researchers using the SWLS
have reported coefficient alphas ranging fr om .79 – .89. Test-retest reliability
appears more stable when the time interv al is less than 10 weeks (.64 – .82)
(Pavot & Diener, 1993). Correlations betwe en the SWLS and other measures of
subjective well-being ranged between -.32 and .62 in a sample of college students (Diener et al., 1985). When compared with emotional well-being
measures, the scale demonstr ates discriminant validity. Construct validity has
been shown with other self-report and extern al criteria measures (such as
interviewer ratings and reports of info rmants) for subjecti ve well-being and life
satisfaction. In this study, Cronbac h’s alpha for the SWLS was .89.
Positive and negative affect were meas ured using the 20-item Positive and
Negative Affect Schedule (PANAS) devel oped by Watson, Telegen, & Clark.
(1988). Ten items on the PANAS assess posit ive affect, while the other 10 items
assess negative affect. The PANAS demons trates test-retest stability across
various time periods ranging from .39 -.71. Cronbach’s coefficient alpha
reliabilities range from .86 – .90 for the positive affect subscale and .84 – .87 for
the negative affect subscale (Watson et al., 1988). Various time frames can be
used with this instrument: e.g., at this moment; today; the past few days or week;
the past few weeks, month or year; or in general. For this study, participants
were asked to respond to the items with how they felt in the past few weeks .

60Construct validity has been examined and demonstrated with other mood scales
such as the State Trait Anxiety Scale and the Beck Depression inventory. For
this study, Cronbach’s alpha was .90 for the positive affect subscale and .93 for
the negative affect subscale.
A quality of life index wa s created using the functional items of the MDHAQ,
the Satisfaction with Life Scale, and the PANAS. First, the four separate scores
were standardized into z-scores. Because life satisfaction was viewed by this investigator as the primary determinant of quality of life, the SWLS z-score was
weighted three times the z-score s for the MDHAQ and the two PANAS
subscales. The formula used to calcul ate the quality of life index was:
QOL=3*z(SWLS) + z(PANAS positive a ffect) – z(PANAS negative affect) – z
(MDHAQ).
Social Ties Measure.
Social ties are the people with which an individual
has a personal relationship. Often used synonymously with social network, social ties allow in individual to gi ve and receive support. Social ties were
determined using a 3-item measure ta ken from the Social Health Scale
developed by Donald et al. (1978). In research by Smith & Wallston (1992),
alpha reliability of this brief scale was .69 and test-retest reliability averaged .76
at one year. In unpublished data, this measure of social ties correlated positively with measures of psychological adjustm ent, quality of emoti onal social support,
and availability of instrumental social s upport in Wallston’s longitudinal panel
studies of persons with rheumatoid arthritis (Ken Wallston, personal

61communication, 2003). Cronbach’s alpha for the social ties measure in this study
was .80.
Coping Measures.
Convergent validity of th e new normalization measure
was examined using selected subscales of the Coping Orientations to Problems
Experienced (COPE) Questi onnaire. This instrument , developed by Carver,
Scheier, & Weintraub (1989), is a self-repor t measure of coping responses that
people use when they confront difficult or st ressful events in their lives (Carver et
al., 1989). Both adaptive and maladaptive coping styles are included in the
instrument. Respondents indicate the frequency with which they use each
coping strategy to deal with stress. Res ponses range from 1 indicating, “I usually
don’t do this at all” to 4 “I usually do this a lot”.
The full COPE consists of fifteen subsca les with four items each. Eight of
the 15 subscales were chosen for this study: Active Coping, Planning,
Suppression of Competing Activities, Po sitive Reinterpretation, Acceptance,
Denial, Behavioral Disengagement and Mental Disengagement. In the study by
Carver, Scheier, & Weintraub (1989), t he selected subscales demonstrated the
following reliabilities: Active Coping (alpha = .62), Planning (alpha = .80),
Suppression of Competing Activities (a lpha = .68), Positive Reinterpretation
(alpha = .68), Acceptance (alpha = .65) , Denial (alpha = .71), Behavioral
Disengagement (alpha = .63), and M ental Disengagement (alpha = .45).
Convergent and discriminant validity hav e been demonstrated (Carver, Scheier &
Weintraub, 1989).

62The selected subscales of the COPE were grouped into two summary
indices: a problem focused copi ng index (Cronbach’s alpha = .88) and an
emotion focused coping i ndex (Cronbach’s alpha = .81) . The problem focused
coping measure contained the following subscales: Positive Reinterpretation,
Acceptance, Suppression of Competing Acti vities, Active Coping, and Planning.
Behavioral Disengagement, Denial, and M ental disengagement comprised the
emotion focused coping measure.
Sick Role NonAcceptance Measure.
Additionally, convergent validity was
established by using an adaptation of t he Sick Role Acceptance Scale that was
originally developed by Brown & Raw lison (1975). Adopting the sick role is
considered the polar opposite of normalizat ion so, for the purpose of this study,
the Sick Role Acceptance Rating Scale it em values were scored in such as
manner as to reflect sick role nonacceptance. The Sick Role Acceptance Rating
Scale consists of a number of bi-polar se ts of adjectives (e.g., good-bad; clean-
dirty) which the respondent completes twice: once as “myself,” and a second
time for “most persons who are sick.” Fo r each bi-polar rating scale, a difference
score was calculated by subtracting the “most persons who are sick” rating from
the “myself” rating. The difference scores were squared and then averaged to
produce a sick role nonacceptance score total. The higher the resultant score,
the more the participant sa w themselves as distant from most other sick persons;
thus, high scores signify the nonacceptance of the sick role. For the squared difference items on this measure, the Cronbach’s alpha was .69.

63Social Desirability Measure. Discriminant validity was established using a
measure of social desirability bias. Normalization and social desirability are
considered distinctly different concepts and, therefore, ther e should not be any
correlation between normalization and social desirability bias. The measure of
social desirability bias used in this study was the Strahan and Gerbasi (1972) 10-
item shortened version of t he Marlowe-Crowne Social De sirability Scale. Kuder-
Richardson reliabilities of this shor tened scale ranged from .62 – .75 among
samples of university students (Strahan & Gerbasi, 1972). For this study,
however, Cronbach’s alpha for the s hortened measure was only .45.

DATA ANALYSIS
Data were entered into an SPSS-PC comp uter file by the investigator.
Reliability of data entry was verified by a second coder who randomly re-entered
15 (10%) of the returned questionnaires. Out of 3405 fields, only 6 errors were
discovered yielding an error ra te of .0018. Thus, it wa s decided that the initial
data entry was accurate and the data we re ready for analysis. The mean of
other subjects on a given item was us ed for missing or incomplete data.
Analyses were conducted using t he SPSS-PC statistical program
package, Version 13. Descriptive anal ysis of the normalization scale was
conducted. Measures of central tenden cy and dispersion were evaluated for
each item and the total scale score. Also , a histogram and boxplot of the total
score was examined to assess the shape of the distribution. An exploratory
principal components fact or analysis was conducted to determine how many

64factors underlie the item se t and to confirm the grouping of items created during
scale development. Item (scale) analyses were conducted to compute the alpha
reliabilities of all of the summated scales.
Correlational analyses between two variables were conducted using both
Pearson product-moment correlations and, in case some of the variables were
not normally distributed, Spearman’s rank -order correlation. Additionally, a
simple correlation was computed within each diagnostic category to examine the
relationship between normalization and length of time since diagnosis. Because of the number of correlations computed, inflation of type 1 error was a concern.
For this reason, the significance level for the correlational statistics in this study
was set at p < .01.
Multiple hierarchical regressions were conducted to determine the
contribution of normalization, illness intrusiveness, and perceived control in
explaining the variance in quality of life and maintenance of social ties.
Hierarchical regression analyses were also used to test the moderational
hypotheses. In those analyses, interaction terms were constructed by multiplying
the mean centered normalization sco re by the mean centered illness
intrusiveness score or the mean cent ered perceived control score.

65
CHAPTER IV

PHASE TWO STUDY RESULTS

Unidimensional versus Multidimensional . The first research question for
Phase Two asked whether the devel oped normalization measure is better
described as a unidimensional measure or a multidimensional measure. An
exploratory factor analysis was conduct ed to determine whether the 36 item
scale administered to the Phase Tw o sample was unidimensional or
multidimensional. Utili zing SPSS-PC version 13, a principal components
analysis with an orthogonal (Varimax) ro tation for components with eigenvalues
greater than 1.00 revealed the potential for 10 underly ing factors explaining 71%
of the variance. The Scree plot (see Figure 2 on the next page) was examined to
help determine exactly how many factors were present.

66363534333231302928272625242322212019181716151413121110987654321
Component Number10
8
6
4
2
0EigenvalueScree Plot

Figure 2: Scree plot
Conceptually, the organization of the 10 potential factors did not seem to
be reasonable in the development of this instrument. Furt hermore, 10 factors
were many more than I had envisioned wh en I constructed the instrument, and
observation of the Scree plot was not a ll that helpful in deciding how many
factors were present in t he data. Additional principa l components analysis forcing
four, and then five, factors and using bot h a Varimax (orthogonal) and an Oblimin
(oblique) rotation did not yield any furt her clarity with respect to the possible
multidimensionality of the in strument. Due to lack of clear delineation of the
underlying factors and the fact that the first principa l component explained twice
the variance as the second and subsequent components, it was decided to treat
the instrument as a unidimensional m easure for the rest of the analyses.

67Using SPSS’s scale analysis proc edure, it was determined that the
original 36 item normalization scale had a Cronbach’s alpha of . 82. Although this
demonstrated adequate internal consisten cy, because the measure was to be
treated as a unidimensional in strument it was thought that a 36 item tool was too
long to be useful to other researchers. Thus, the measure was further trimmed to
the current 20 items by exam ining corrected item-total correlations to determine
which items were most reflective of t he main construct being measured. Twelve
items that correlated poorly with the other items or fa iled to add to the overall
internal consistency of the scale were e liminated. Additionally, the four reverse-
worded items were eliminated from the measure due to questionable
performance and the desire to produce a us er-friendly instrument. Two items on
the scale unexpectedly correlated slightly n egatively with some of the other scale
items. One of those items referred to hiding the fact that the individual has the
condition, while the other item stated t hat excuses were given for accidents.
Conceptually these two items were deem ed integral to the construct of
normalization so, notwithstanding their poor correlation with the other 18 items,
those two items were left in the instrument to boost its content validity. Despite
the inclusion of those two items, the Cronbach’s alph a of the 20-item
normalization measure utilized in the re mainder of this dissertation is a
respectable .86. (See A ppendix B for the original 36 item measure, and see
Table 3 on page 70 for the final version of the normalization scale.)

68The second research question asked: What are the psychometric
properties of the final no rmalization measure? Before addressing this question,
descriptive statistics regarding the final normalization measure are presented.
Descriptive Statistics.
The mean normalization scale score for the full 20
items is 109.29 with a standard deviation of 17.78. The mean item score is 5.46
with a standard deviation of . 89. (See the mean item statistics in Table 4 on
page 71 and Figure 3 on the next page for th e histogram of the normalization
mean item scores). The dist ribution of the normalizat ion measure is negatively
skewed (with most scores at the higher end) and positively kurtotic (i.e., peaked).
Because of the skewed distributio n, both parametric and nonparametric
correlational statistics are report ed in the test of the hypotheses.

Reliability. As already reported, Cr onbach’s alpha for the 20 item
normalization measure is .86, demons trating high internal consistency.

69

Figure 3: Histogram of the Normalizati on Assessment Measure

70
Table 3: Item Statistics

Mean Std.
Deviation Corrected
Item Total
Correlation Cronbach's
Alpha if Item
Deleted
I am normal except for my condition. 6.19 1.54 .58 .84
I pace myself during the day in order
to conserve energy. 5.49 1.81 .33 .85
I always maintain a normal
appearance to others in the way I
physically look. 6.18 1.40 .55 .85
I am better off than most people with
my condition. 5.87 1.69 .57 .84
I have maintained social interactions
with others despite my condition. 6.00 1.62 .74 .84
I live a normal life. 5.55 1.97 .65 .84
Everybody treats me normally. 6.01 1.51 .61 .84
There are worse things than being
diagnosed with this illness. 6.65 1.09 .56 .85
I structure my activities to maintain
normalcy. 6.07 1.52 .69 .84
I accept my condition. 6.25 1.42 .52 .85
I engage in activities such as exercise
to feel normal. 4.92 2.02 .56 .84
I choose to skip more trivial activities
so that I have the energy to
participate in activities that I really value. 5.04 2.07 .44 .86
I’m like everyone else, everyone has
to contend with something in life. 6.44 1.19 .36 .85
I maintain a normal appearance in the
way I behave. 6.37 1.16 .66 .84
Keeping a routine is important to me. 5.90 1.70 .42 .85
I haven’t changed the things I do
since being diagnosed with this
condition. 4.54 2.32 .63 .84
I try to hide any outward indications of
my condition. 3.81 2.09 -.10 .87
I’m able to incorporate the treatment
for my condition into my normal life
activities. 5.09 1.85 .35 .85
I give excuses for any accidents in
order to hide my condition. 2.96 1.80 .20 .86
I only tell those closest to me about
my condition. 4.19 1.94 .04 .87

71

Table 4: Descriptive Statistics for Mean Item Scores
StatisticStd.
Error
Normalization
Assessment
Measure Total Mean
5.46 .07
95%
Confidence
Interval for
Mean Lower Bound
5.31
Upper Bound 5.60
5% Trimmed Mean 5.50
Median 5.65
Variance .80
Std. Deviation .89
Minimum 1.35
Maximum 6.70
Range 5.35
Interquartile Range 1.30
Skewness -1.23 .20
Kurtosis 2.38 .40

Validity
. The validity of the 20 item uni dimensional normalization measure
was tested by the following 12 hypotheses.

H1. Normalization and Problem Focused Coping. The first hypothesis
stated that there w ould be a positive relationship between normalization and
problem focused coping. The normalizat ion measure correlated positively and
significantly with the problem focused c oping total score (r = .56, p < .001; ρ =
.53, p < .001) as well as each of the subscales comprising problem focused

72coping except for the acceptance subsca le where the low positive correlation
was not significant (see Table 5 on t he next page). Thus, hypothesis 1 is
supported.
H2. Normalization and Em otion Focused Coping.
The second hypothesis
indicated that there woul d be a negative relationship between normalization and
emotion focused coping. Normalization correlated negatively with the emotion
focused coping total score (r = -.32, p < .001; ρ = -.33, p < .001). Behavioral
disengagement was significantly correla ted with normalization in the negative
direction. However, the correlations for denial were not significant. The negative
correlation of mental disengagement with normalization was not significant with
parametric analysis but was significant with nonparametric analysis (see Table 5
on the next page). Therefore, there is support for t he overall hypothesis.

73Table 5: Correlations Between Normalization and Coping Measures

COPING INDICES AND SUBSCALES CORRELATIONS WITH
NORMALIZATION MEASURE
Problem Focused Coping Total Score r = .56, p < .001
ρ = .53, p <.001
Acceptance subsca le r = .13, p > .05, ns
ρ = -.01, p > .05, ns
Active Coping subscale r = .49, p. < .001
ρ = .50, p < .001
Planning subscale r = .60, p < .001
ρ = .59, p < .001
Positive Reinterpretation s ubscale r = .26, p < .01
ρ = .25, p < .01
Suppression subscale r = .47, p < .001
ρ = .56, p < .001
Emotion Focused Coping Total Scor e r = -.32, p <.01
ρ = -.33, p <.001
Behavioral Disengagement
subscale r = -.41, p < .001
ρ = – .41, p < .001
Denial subscale r = -.20, p < .05*
ρ = -.13, p > .05, ns
Mental Disen gagement subscale r = -.15, p > .05, ns
ρ = -.21, p = .01
* This is not significant at p < .01
H3. Normalization and Sick Role Nonacceptance.
For hypothesis number
three it was expected that the relati onship between normalization and sick role
nonacceptance would be positive. T he normalization measure correlated
positively and significantly (r = .26, p < .01; ρ = .38; p <.001) with the sick role
nonacceptance score. Thus, hypothesis 3 is supported.
H4. Normalization and Social Desirability.
For the fourth hypothesis, no
correlation was expected between normalization and social desirability. The

74correlation of social desirability with normalization was slightly positive but
nonsignificant (r =.12; p >.15, ns; ρ =.13; p >.10). The hy pothesis is supported.

H5. Normalization and the di agnosis of Fibromyalgia. Individuals with
fibromyalgia were anticipated to score lower on the normalization measure than
people without fibromyalgia, according to hypothesis number five. An
independent samples t-test indicated that although the 20 individuals with
fibromyalgia (M = 5.18) scored lowe r on the normalization measure than
individuals with other diagnoses (M = 5.50) , this difference was not statistically
significant (t = 1.42; df = 145; p > .15, ns; Mann-Whitney U = 978.5, p > .10, ns).
The hypothesis is not supported by these results.
H6. Normalization and Length of Time Since Diagnosis.
Due to the
trajectory of illness, it was theorized in hypothesis number six that a negative
relationship would exist between lengt h of time since diagnosis and
normalization. For the sample as a whole, this relationship was nonsignificant (r
= -.02, p > .75; ρ = .01, p > .85). This relationsh ip was also examined separately
within the four diagnostic categories. Normalization co rrelated negatively using
the product moment correlation, but not significantly, with the number of years
since diagnosis of rheumatoid arthri tis (r = – .016, df = 77, p > .80; ρ = .07, p >
.05), osteoarthritis (r = -.22, df = 35, p > .20; ρ = -.281, p > .05), and fibromyalgia
(r = -.011, df = 19, p > .90; ρ = .03, p > .80). Normaliz ation correlated positively,
although again not significant ly, with the number of years since the diagnosis of

75lupus (r = .29, df=16, p > .20; ρ = .29, p > .20). Additional ana lyses included the
generation of scatterplots by diagnosis to examine possible curvilinear
relationships. No relationships were identified. Thus, hypothesis 6 is not
supported.
H7. Normalization and Perceived Control.
Consistent with the
conceptual framework, hypothesis seven pr edicts that perceived control will have
a positive correlation with normalization. The perceived control index correlated
positively with the normalization measure (r = . 50, p <.001; ρ = .52, p < .001). In
this study, helplessness correlated negativ ely with normalization (r = -.40, p <
.001; ρ = – .36, p < .001). Perceived com petence, as measured by the Perceived
Medical Condition Self-Management Scale, co rrelated in a positive direction with
normalization (r = .50, p < .001; ρ = .57, p < .001). Ther efore, hypothesis 7 is
supported.
H8. Normalization and Illness Intrusiveness.
In hypothesis eight, a
negative relationship was expected between normalization and illness
intrusiveness. The normalizat ion measure correlated significantly in the negative
direction with the illness intrusivene ss rating scale (r = -.59, p < .001; ρ = -.67,
p < .001). Thus, hypot hesis 8 is supported.

H9. Normalization and QOL. According to hypothesis number nine, there
is a positive relationship between normalization and QOL. The QOL index

76correlated positively with the normaliz ation measure (r = .64, p < .001; ρ = .70, p
< .001). Looking at the separate co mponents of QOL, normalization correlated
positively with the life satisfac tion scale (r = .67, p < .001; ρ = .75, p< .001) and
with the positive affect PANAS subscale (r = .18, p < .05; ρ = .16, p = .05).
Normalization correlated negatively with t he MDHAQ subscale for difficulty in
performing activities of daily living (r = – .50, p < .001; ρ = – .52, p < .001) and the
negative affect PANAS subscale (r = – .50, p < .001; ρ = – .63, p < .001). Thus,
these results support hypothesis 9.
H9a. QOL as a function of Normalizat ion, Perceived Control, and Illness
Intrusiveness. Hypothesis 9a posits that the variance in QOL is explained by the
linear combination of perceived control, illness intrusiveness, and normalization.
QOL correlated significantly with normalization (r = .64, p < .001; ρ = .70, p <
.001), illness intrusiveness (r = -.83, p < .001; ρ = -.82, p < .001), and perceived
control (r = .78, p < .001; ρ = .77, p < .001). A multiple linear regression analysis
was performed using the perceived cont rol index, normalization score, and
illness intrusiveness as predict ors of QOL. Seventy-eight percent of the variance
in QOL was explained by normalization, perceived control, and illness intrusiveness (F = 159.33, df = 3, 134, p < .001). However, the tolerance scores
for perceived control and illness intrusivene ss in this three predictor regression
model indicated a problem with multicolinear ity. For this r eason, the QOL index
was regressed separately on normalizati on and perceived control omitting illness
intrusiveness, and then again on normalizat ion and illness intrusiveness omitting

77perceived control. When perceived c ontrol is removed from the model,
normalization and illness intrusiveness acco unt for 73% of the variance in QOL
(F = 184.90, df = 2,137, p < .001). W hen illness intrusiveness is removed from
the model, normalization and perceived contro l predict 69% of the variance in
QOL (F = 154.12, df = 2, 139, p < .001). Hypot hesis 9a is supported.
H9b. Normalization Uniquely Explains Variance in QOL.
Additionally,
hypothesis 9b stated that, when contro lling for illness intrusiveness and
perceived control, normalization uniqu ely explains the variance in QOL.
Normalization contributes 4% of unique vari ance in QOL in the model with illness
intrusiveness as the other predictor and 9% of the unique variance in QOL in the
model with perceived control as the other predictor. In both of these models, the
amount of unique variance cont ributed by normalization is statistically significant
at p < .001. Thus, hypothesis 9b is supported.

H10. Normalization and Social Ties. According to hypothesis number ten,
there is a positive relationship between normalization and the presence of social
ties. The presence of social ties correla ted positively with normalization (r = .26,
p < .01; ρ = .37, p < .001) alt hough the magnitude of this correlation was much
less than with other constructs examined in this study. Therefor e, hypothesis 10
is supported.

78 H10a. Normalization and Social Ti es, Perceived Control, Illness
Intrusiveness. Hypothesis 10a stated that the vari ance in social ties is explained
by the linear combination of perceiv ed control, illness intrusiveness, and
normalization. As stat ed earlier, a multicolinearit y problem existed when all
three predictors are included in the sa me model. Therefore, as with QOL,
separate regression analyses we re performed. First, the measure of social ties
was regressed on illness intrusiveness and normalization. Those two predictors
together accounted for 10% of t he variance in social ties (F = 7.65, df = 2, 139, p
< .001). A second multiple linear regression analysis indicated that perceived
control and normalization predict ed 8% of the variance in social ties (F = 5.88, df
= 2, 139, p < .01). Thus, hypothesis 10a is supported.
H10b. Normalization Uniquely Expl ains Variance in Social Ties.

Hypothesis 10b states that, when cont rolling for illness intrusiveness and
perceived control, normalization uniquely ex plains the variance in social ties.
Normalization contributed 1% of unique vari ance in explaining social ties in the
model with illness intrusiveness as the other predictor and 4% of the unique
variance explaining social ties in the m odel with perceived control as the other
predictor. In neither of these analyses, however, is th is significant amount of
unique variance (at p < .01) . Therefore, hypothesis 10b is not supported.
H11. Illness Intrusiveness as a Moderator.
In hypothesis number 11,
illness intrusiveness is predicted to moderate the relationship between

79normalization and QOL. In the first step of the hierarchical analysis, the main
effects of normalization and illness intrus iveness explained 73% of the variance
in QOL (F = 184.90, df = 2, 137; p < .001). In the second step of the analysis,
the interaction of illness intrusiv eness and normalization accounted for an
additional 1% of the variance in QOL (F = 6.15, df = 1, 136, p < .01). Because
the interaction term was si gnificant, I was able to go on and examine the next two
hypotheses, looking separately at those high and low in illness intrusiveness by a
median split on that variable. Theref ore, hypothesis 11 is supported.
H11a. High Illness Intrusiveness.
I hypothesized t hat, among people with
high illness intrusiveness, the relationship between normalization and QOL would
be negative. However, the correla tion between normalization and QOL in
persons experiencing high illness intrusivene ss was significantly positive (r = .60,
p < .001). Theref ore, hypothesis 11a is not supported.
H11b. Low Illness Intrusiveness.
Among people with low illness
intrusiveness, I hypothesized that the re lationship between normalization and
QOL would be positive. The correlati on between normalization and QOL among
individuals with low illness intrusivene ss, was, indeed, positive but it was
nonsignificant (r = .20, p < .05). Therefor e, hypothesis 11b is not supported.

H12. Perceived Control as a Moderator. In hypothesis twelve, I expected
that perceived control would moderate the relationship between normalization

80and quality of life. The main effects of normalization and perceived control
explained 69% of the variance in QOL (F = 154.12, df = 2, 139, p < .001) in the
first step of the hierarchical analysis . In the second step of the analysis, the
interaction of perceived control with normalization explained 1% additional
variance in QOL, but this was not a significant change in R2 (F = 3.50, df = 1,
138, p > .05). Because the interaction term was not significant, this indicated that
no moderation was present and, thus, I was not able to go on to examine the
variance in quality of life as a function of high versus low perceived control.
Therefore, hypothesis 12 is not supported.

81 CHAPTER V

DISCUSSION

The purpose of this study was to re fine the normalization concept through
the development of a m easure suitable for use by researchers conducting
quantitative research on how chronically ill individuals cope with their medical
condition. Additionally, the intent of this study was to ascertain the psychometric
properties of the normalization meas ure I developed using a sample of
individuals diagnosed with rheumatogical conditions and, in doing so, advance
our understanding of the role that normalizat ion plays in these individuals’ lives.
The two research questions for this project addressed the dimensionality
and psychometric properties of the normaliz ation measure that I developed. The
instrument was initially envisioned as a 20-30 item unidimensional or
multidimensional scale with a desirable alpha reliability (in the range of .80 to .90)
as well as possessing content, discriminan t, and construct validity. Consistent
with this vision, the scale developed during the course of this study is a 20 item
measure with an alpha reliabi lity of .86 and is best descri bed as unidimensional.
A desirable alpha reliability between .80 and .90 can increase the statistical
power of a scale, thus allowing fewer subj ects to be sampled in order to detect
significant differences (DeVellis, 1991). DeVellis recommends that scales with
alpha reliabilities above .90 should be shortened, as scale length augments

82alpha reliability and scales with very high alphas most likely contain redundant
items. The final (20-item) version of the normalization meas ure is an appropriate
length resulting in decreased respondent burden with optimized internal
consistency when compared to the original 36 item scale that had an alpha of
.82.
Unidimensional scales assume that a single dimension exists influencing
all of the respondents’ answers on t he same level. On the other hand,
multidimensional scales allo w for discrete differences between individuals to be
assessed in terms of the various stimu li shaping an individual’s response to an
item (DeVellis, 1991; Nunnally & Bernst ein, 1994). Earlier in this paper,
normalization was conceptualized as hav ing multiple dimensions. There are
temporal aspects to normalization, perceptual (or cognitive) aspects to normalization, and behavioral aspects to no rmalization, thus creating a dynamic,
cognitive-behavioral process. These aspects may be different dimensions of
normalization. However, the items of the developed scale did not group together
in identifiable subscales and, thus, I c hose to treat the scale as a simple
unidimensional summative scale. Pe rhaps with continued research, the
multidimensionality of normalization may be tapped with items that group
conceptually and mathematically together. In the meantime, treat ing the scale as
unidimensional has led to a number of important findings that will be discussed
below.

83 In this sample, the normalization scale scores were skewed negatively (to
the high end) with a mean item score of 5.45 out of a possible 7.00, indicating
that the majority of individuals normalized to a great extent. There are at least
three reasons that the scores may be skewed negatively. First, it may be that the
sample was heavily biased toward individua ls diagnosed with conditions, such as
osteoarthritis or rheumatoid arthritis, where individuals commonly normalize.
Previous qualitative research has identified that indivi duals with arthritis employ
normalization as a dominant mode of adapt ation (Wiener, 1975; Robinson, 1993;
Jerret, 1994). Individuals with lupus and fibromyalgia have not been studied
previously in relationship to normalizat ion. However, I hypothesized that
individuals with fibromyalgia would be less likely to normalize because these
individuals are often engaged in sick role behavior in order to convince others
they are not well. The m ean normalization score for individuals with fibromyalgia
was lower than for the other diagnoses st udied, although the difference was not
significant. There were, however, only 21 individuals (13 % of the total sample)
diagnosed with fibromyalgia. It may be that due to the sm all percentage of
individuals with fibromyalgia in my sa mple, there was not enough power to detect
significant differences in normalizat ion between those who were diagnosed with
fibromyalgia and those who were not. Clearly, though, even individuals with
fibromyalgia scored higher on the no rmalization scale than I had expected.
Second, it may be that individual s who were normalizing to a greater
extent were predisposed to participate in t he study as a result of their increased

84satisfaction with life. Individuals who were less positive about their life may
have been less positive about the opportunity to participate in survey research,
particularly research delving into c oping with chronic illness. Dillman (2000)
identifies that a positive impression is cr eated when a survey is highly salient, is
easy to do or has little perceived cost, and looks interesting and important or is
rewarding to complete . Individuals who are depressed may not view a survey
about coping as rewarding to fill out. In fact, one potential participant contacted
this researcher after receiving the ques tionnaires and refused to complete the
survey. She stated, “I am having great difficulty coping with this disease and I’m
afraid I would throw off your re sults because I’m so depressed.”
Third, the normalizatio n measure may have inherent biases. The items
may be worded in such a way as to creat e a bias toward the high end of the
response scale or the measure may not be sensitive enough to discriminate and
detect individual differences all along the continuum of normaliz ation. Mean item
scores on the normalization measure r anged from 1.35 to 6.70 on a 7 point
scale. We would expect that if the scale did not discriminate individual
differences that such a r ange of scores would not exist. Additionally, we would
not expect the strong correlations obt ained between the normalization measure
and the various other scales I administer ed if the normalization scale failed to
detect differences. Therefore, even with a bias toward agreeing with the
normalization items, there is sufficient variation in item responses to see
moderate to strong correlations with ot her theoretically related measures.

85 Despite the fact that the 20 item unidimensional normalization measure I
have developed is internally consistent with an alpha of .86, I have only so far
established one type of reliability for this new tool. Another type of reliability is
test-retest reliability which assumes tem poral stability of the measure as well as
the underlying construct (DeVellis, 1991). For normalization, the question of
temporal and construct stability has yet to be answered and leads to the question
of whether normalization is best viewed as a state or trait. An antecedent to
normalization, as discussed in Chapter Tw o, is the desire for normalcy. This
desire could be conceptualized as a trait predisposing individuals to normalize.
On the contrary, one might argue that just because an individual is diagnosed
with a chronic manageable condition and may choose to normalize in that
specific circumstance, if the same individual is diagnosed with a different
condition, cognitive and perceptual differenc es may result in the individual opting
to adapt in a different manner. Certainly, the idea that individuals “choose” their
adaptation mode may be more closely a ssociated with a state versus trait
premise. Nonetheless, the establishment of test-retest stability would contribute
additional evidence for the reliability of t he measure. One would expect that in
the absence of situational changes, a high correlation between normalization scores would exist when the measur e was administered on two separate
occasions within a short period of time.
The normalization measure has some c ontent validity. Content validity
was established using the existing literat ure about normalization and input from

86experts in the fields of normalizati on, coping, and instrument development
during Phase One. In light of the uni dimensionality of th e measure and the lack
of correlation with acceptance and denial subscales, further work might be
necessary to expand the content validity of the scale.

Construct Validity
Construct validity (including conver gent and discriminant validity) was
established by examining twelve specific hypotheses most of which were supported by the data gathered during P hase Two. Convergent validity was
demonstrated by comparing selected sub scales of the COPE and a measure of
sick role nonacceptance with the normalizatio n scale. As expected, there was a
positive correlation between the problem fo cused coping index I constructed and
the normalization scores. Also, there were significant positive correlations
between normalization and the following subscales of the COPE: planning;
suppression of competing activities, posit ive reinterpretation, and active coping.
This is consistent with the premise that normalization in volves voluntary
responses comprised of engagement coping strategies as discussed earlier in Chapter Two.
Normalization did not correlate signifi cantly with acceptance, one of the
COPE subscales I included in my index of problem focused coping. This may be
due to a lack of items in the normalizat ion measure eliciting the concept of
acceptance. The normalization measure has one item related to acceptance on

87which individuals averaged a score of 6.25. On the other hand, the acceptance
subscale for the COPE mainly assesses finality and perceived inability to “change what has happened.” A clear foundat ion of normalization is that
individuals acknowledge the presence as well as the seriousness of the condition
(Hilton, 1996; Knafl & Deatrick, 1986). This researcher equated
acknowledgement with acceptance. Although individuals may acknowledge
having the condition, it may be that i ndividuals do not equate acknowledgement
with acceptance. Acceptance may be view ed more from the aspect of “giving
into” the illness which, in fact, is contrary to incorporating the condition into one’s
life as is true with normalization.
Normalization correlated negatively, as anticipated, with the emotion
focused coping index. For the subscale s of the emotion focused coping index,
normalization correlated negatively and sign ificantly with mental disengagement
and behavioral disengagement. The signi ficant correlation with mental
disengagement is clearly bor derline, given that the ra nk-order correlation was
significant at p = .01 but the product-mo ment correlation was not. The significant
negative correlation with behavioral disen gagement was expected. The coping
strategies of normalization include so me behavioral disengagement tactics such
as selective association with chronically ill others. The negat ive relationship with
denial was also expected, but was not si gnificant. Denial, a subscale of the
COPE that was included in my emotion focused coping index, is thought of as
the polar opposite of acceptance. T he findings that bot h the acceptance

88subscale and the denial subscale of the COPE were uncorrelated with the
normalization measure give some credence to the notion that additional content
validity might be needed for the normalization measure. Or, it may indicate that
more work needs to be done with the conceptual framework undergirding
normalization. An alternative explanati on is that the acceptance and denial
subscales of the COPE may not va lidly measure acceptance and denial.
The sick role nonacceptance score was also utilized to establish the
convergent validity of the normalization measure. The sick role nonacceptance
score correlated positively with normalizatio n, as anticipated, but the magnitude
of this correlation indicated that the two scores share only around 10% common
variance. The size of the correlation could possibly have been affected by the method I used to derive the sick role nonacceptance scores. Although squaring
the differences between self ratings and ratings of “the average person who is
sick” is a defendable way of creating a di stance score, I acknowledge that other
ways of calculating the sick role nonacc eptance score might have resulted in
somewhat different findings. Clearly, however, in spite of the unexpected null
results between normalization and the a cceptance and denial subscales of the
COPE, the results discussed thus far s upport the convergent va lidity of the new
normalization measure by showing its re lationship to validated measures of
similar constructs.
Hypotheses seven through twelve ident ify expected relationships between
normalization and other constructs based on the conceptual framework

89described earlier in Chapter Two. In hy pothesis seven, eight, and nine, it was
posited that normalization would correla te with perceived control, illness
intrusiveness, social ties and quality of life. Indeed, the no rmalization measure
correlated substantially with the perceived control index, the illness intrusiveness
rating scale, and the quality of life index. Higher normalization scores correlated
with higher perceived control scores, gr eater quality of life scores, and lower
illness intrusiveness scores. These re lationships are consistent with the
conceptual framework linki ng the concepts. The relationship of high
normalization scores with high quality of lif e scores supports the contention that
normalization is a positive, des irable mode of adaptation.
Additionally, a subproposition of hypot hesis nine stated that quality of life
could be predicted by a linear combination of perceived control, normalization,
and illness intrusiveness. Although this s ubproposition did not directly speak to
the validity of the normalizat ion measure, it was incl uded because it speaks to
the significance of normalization and gives support for the further investigation of
the contradictory outcomes of normalization. Testing this proposition was difficult
in light of the multicolin earity issues among the predict ors, particularly including
both perceived control and illness intrus iveness in the same equation. Thus,
normalization was coupled separatel y with perceived control and illness
intrusiveness, with each model significantly accounting for vari ance in QOL. QOL
is influenced by a combination of norma lization and illness intrusiveness as well
as the combination of no rmalization and perceived control. The significant R-

90squares in each of these models, how ever, merely demonstrate that the
normalization measure works in conjuncti on with either perceived control or
illness intrusiveness to predict QOL; in and of itself, the fact that hypothesis 9a
was supported is a weak argument for the validity of the normalization measure.
However, another subproposition of hypothesis nine predicted that
normalization would uniquely contribute to the variance in QOL when controlling
for perceived control and illness intrusiv eness. Normalization did significantly
contribute uniquely to the variance of QO L as expected. Normalization uniquely
accounted for 4% of the variance in QOL when paired with illness intrusiveness
and 9% of the variance in QOL when pai red with perceived control. The
performance of the normalizat ion measure in explaining QOL when controlling for
other relevant concepts fr om the conceptual framewor k is strong support for the
construct validity of the normaliz ation measure I developed.
The QOL index was constructed by we ighting life satisfaction score three
times the other measures for QOL. The measurement of QOL is widely debated
in the literature. Ea rly conceptualizations placed emphasis on subjective
measures of satisfaction or happiness. However, QOL is multifaceted and mere
measures of satisfaction or happiness do not accurately reflect the broad scope
of QOL. For this reason, the QOL index for this study included physical, affective
and life satisfaction components. Life satisfaction is considered to be the
cognitive or appraisal component of QOL and does tend to be a relatively stable variable (Nes et al). Individuals tend to base their evaluation of life satisfaction

91on standards they set for themselves . This standard often depends upon health
and energy as well as other factors. T he weights associated with these factors
will differ across individuals (Tate & Forc hheimer). Thus, it seems that while
physical functioning impacts QOL, the in fluence of overall life satisfaction may
override some of the impact of physical fu nctioning. Therefore, life satisfaction
was weighted more than physical functioning . This weighting of life satisfaction
may have contributed to the findings suppor ting the hypothesis. However, the
correlation is highly significant and it may be argued that even without the
weighting of life satisfaction, signifi cant results would have been obtained.
Hypothesis ten examined the rela tionship between normalization and
social ties. The maintenance of social ties is often a priority for individuals and
families who normalize (Dewis, 1989; Rehm & Franck, 2000). Additionally, the
literature supports the idea that families who normalize with ease describe having
social support. For this reason, a pos itive correlation was anticipated between
normalization and social ties. Indeed a signi ficant positive relationship, albeit a
modest one, was demonstrated between normaliz ation and social ties. Thus, the
presence of a social network correlated pos itively with more normalization. While
a positive relationship exists, it rema ins to be determined whether individuals
normalize more easily in the presence of an extensive social network or whether
the process of normalization assists the i ndividual in maintaining social ties or
both. The conceptual framew ork identifies social suppor t as an influencing factor
for normalization and the maintenance of social ties as an outcome of

92normalization. The measure utilized wa s a 3-item measure assessing social
network in terms of the number of close friends, the number of close family and
the number of known people w ho understand the individual’s condition. This
measure does not reflect the maintenance of social ties and, thus, does not yield
enough information about the social support giv en to or felt by the ill individual.
In order to truly assess the maintenance of social ties, a longitudinal study would
have to be conducted or at the very least, retrospective self report information
about the individual’s social network pre-diagnosis as well as post diagnosis would need to be obtained.
Hypotheses eleven and twelve pos ed expectations about potential
moderators of normalization as an explanat ion for some of the contradictory
outcomes in quality of life and social ties that had been reported in the literature.
In hypothesis eleven, illness intrusiv eness was hypothesized to moderate the
relationship between normalization and qua lity of life. Based upon previous
research findings, I surmised that the more intrusive a condition or its treatments,
the more energy an individual would ex pend in normalization efforts which, in
turn, may actually lead to a decreased qualit y of life. In ess ence, I felt that
positive quality of life occurs when indivi duals can easily incorporate an illness or
condition into their everyday life with mi nimal intrusion. The results, however,
indicate that the relationship betw een normalization and quality of life was
positive for both individuals with high illness intrusiveness and those with low
illness intrusiveness. In fact, the posit ive relationship was significant for high

93illness intrusiveness, where I expec ted a negative relationship, and
nonsignificant for low illness intrusiveness. Thus, individuals in my sample who
successfully normalize in spite of the effort expended to overcome the
intrusiveness of the illness, report a positive quality of life. Perhaps this is a
reflection of personal satisfaction for a goal obtained, particularly given the
weight attributed to life satisfaction in the quality of life index. Another possibility
is that the scale chosen as a measur e illness intrusiveness may not measure
disease intrusiveness. This possibility is unlikely because the measure utilized has demonstrated high reliability and validity in other studies. More research will
need to be conducted to determine the va riables affecting decreased quality of
life amongst individuals who normalize. A possible answer may be that illness trajectory would affect normalization efforts and quality of life. As the trajectory of
an illness leads to more intrusive symptom s or effects, norma lization efforts may
be ineffective despite the energy expended and thus result in a lowered quality of
life.
In hypothesis twelve, it was posited that perceived control would moderate
the relationship between normalizati on and quality of life. However, a
moderational relationship was not supported by the results in this study. There is
a positive correlational relationship betw een perceived control and normalization.
It may be that perceived control is ess ential for normalization to occur.
Individuals may not be abl e to employ the cognitive and behavioral strategies
necessary for normalization unless they perceive control over their behavior,

94situation and appearance. Thus, it ma y be that normalization mediates the
relationship between perceived control and quality of life. This could be a
possible future area of research.
Hypothesis number six ad dressed the length of time since diagnosis and
normalization as a way to examine illness trajectory. Theoretically, for most
chronic illnesses, a longer time since diagnosis corresponds to the development
of more severe symptoms or complicati ons as a result of the illness or the
treatment or both. The expectation was that there would be a negative
relationship between normalization and length of time since diagnosis. All of the
relationships between length of time sinc e diagnosis and the various conditions
(OA, RA, Lupus and Fibromyalgia) were nons ignificant. The relationships varied
in terms of positive and negative dire ctions, even within a diagnosis based on
whether the product moment correlation or the rank order correlation was
calculated. The results are unclear, mo st probably as a result of the way in
which the data were obtained and coded. Participants self-reported their
diagnoses and, in some cases, partici pants reported more than one diagnosis of
interest (i.e., arthri tis and fibromyalgia, or arthriti s and lupus). For this sample,
the majority of individuals had been diagno sed for less than 10-15 years. It may
be that modern advances have reduced the trajectory of r heumatoid illnesses
where differences related to trajecto ry would be detected in individuals
diagnosed for longer periods of time. Mo re research is needed to better isolate

95differences amongst conditions in relati onship to normalization as well as
differences related to length of time since diagnosis.

Discriminant Validity
In this study, discriminant validit y of the new normalization scale was
established using the shortened measure of social desirability bias advocated by
Strahan & Gerbasi (1972). No relati onship was expected between social
desirability and normalization, and none wa s found. The normalization measure
is distinctly different from social desir ability as evidenced by the lack of any
correlation between the two measures. The low alpha reliability for the 10-item
social desirability measure in this study is a concern. While the alpha reliability is low in my study for this so cial desirability measure, the normalization score does
not correlate with the underlying concept that constitutes the Strahan and
Gerbasi (1978) social desirabi lity measure. Thus, in that sense, I am confident
that discriminant validity of my nor malization scale has been demonstrated.
In summary, validity of the norma lization assessment measure was
established in the following ways. C ontent and face validity of the new
normalization measure was established fr om feedback obtained from participants
in phase one of the study and from feedback of the expert panel during
development of the normalization instru ment. Convergent validity was examined
in Phase Two through the use of one or more coping measures and the Sick-
Role Acceptance Scale. Additionally , construct validity was supported through

96the examination of normalization in re lationship to the identified influences
(perceived control, illness intrusivene ss) and outcomes (quality of life,
maintenance of social ties) of normaliz ation as set fourth in my conceptual
framework (see Figure 1 on page 21) . Discriminant validity is another
subcomponent of construct validity. In this study, discriminant validity was
established using a shortened measure of social desirability bias. While this
study has been a good start, it is acknow ledged that much more work could be
done to establish the construct valid ity of this new instrument.

Threats to Statistical Validity
Threats to statistical va lidity have been minimized in this study through the
following strategies. Sample size was adequate enough to detect an effect. The other measures utilized in Phase Two we re reliable and presumed valid. Subject
burden for completing measures was consid ered. The number of measures and
the number of items used was limited when appropriate to minimize subject
burden with completion of forms. Mult iple measures of perceived control and
quality of life and multiple subscales of problem and emotion focused coping
were used to increase the va lidity of these constructs.

Limitations
All of the data collected for this study was through self-reports using
mailed questionnaires. Mailed questionna ires offered several advantages and

97disadvantages. The advantages of a mailed survey were: (1) a more
representative sample of individuals wit h varied levels of disability (the mailing
included individuals who we re not frequently seen in t he physician’s office); (2)
the attainment of a greater number of su bjects within a sma ller amount of time;
(3) individuals had privacy for comple ting questionnaires; and (4) individuals
were under no time constraints to comple te the questionnaires within one sitting.
In terms of disadvantages, maile d questionnaires had the following
drawbacks: (1) the questionnaires had to stand alone without needing
clarification by the researcher; (2) the researcher had no control of environmental
influences; (3) the researcher had no cont rol over who chose to respond versus
who chose not to respond; and (4) re sponse rates were lower than desired
(Bourque & Fielder, 1995).
Several strategies were employed to counter the disadvantages of mailed
questionnaires. The number of questionna ires within the packet was limited to
minimize participants feeling overwhel med. The questionnaires were organized
in a user-friendly manner with a generous amount of white space so as not to
seem too complex and cumbersome. The instructions were clear and concise.
An addressed, stamped return envel ope was included to minimize subject
burden for returning the questionnaires. A reminder postcard and thank you
card was mailed several weeks after the questionnaire.
Even with the tactics employed to ens ure an optimum response rate, the
data collection portion of the study took much longer t han anticipated. Potential

98participants for the focus groups were diffi cult to recruit as many individuals
lived in households with no car or onl y one car and, perhaps, clustered their
errands with physician appointments. A dditionally, participants preferred the
option of participating in Phase Two in stead of Phase One. The delay in
completing Phase One created a time lag bet ween the initial contact for recruiting
participants for Phase Two and the actual mailing of the questionnaires.
Reminder calls were placed just prior to the mailing of the questionnaires to
confirm address information. However, some of the participants who had initially
agreed to be involved in Phase Two no longer were accessible at the phone
number or address on record. In retrospect, it may have been expedient to have
recruited for Phase One directly in the physician’s office and hold an impromptu
focus group with patients awaiting their physician appointment.
Another limitation of this study wa s the design method utilized. A cross-
sectional design allows for the examinati on of variables at one point in time and
can be a convenient method of gathering data. However, in order to really be
able to determine causal relationships, a longitudinal study is more appropriate.
Additionally, the individuals sa mpled included only those with
rheumatological conditions. Normalizati on is universal across disease entities;
however, for the ease of data collection, f our conditions within one specialty area
were chosen. Although all of t he individuals were diagnosed with a
rheumatological disease, I tried to str engthen the generalizability of my results by

99including four separate conditions to ens ure variability of re sponses and levels
of disability.

Future Research Further development of the normaliz ation measure may be necessary.
Future development should focus on enhancing content validity with particular attention to be paid to the possible multid imensionality of normalization. Also, as
mentioned under Limitations, this study only examined normaliz ation in persons
diagnosed with a rheumatologi cal condition. The measure I developed will need
further refining and testing with other populations, such as patients with multiple
sclerosis or diabetes, to increase exter nal validity and generalizability.
Conclusion
This study has refined the c oncept of normalization through the
development of an assessment measure, thus giving researchers the alternative
of using quantitative methods to investigat e and clarify some of the contradictory
outcomes associated with normalization. This measure will enable researchers
to determine under what conditions does no rmalization result in: (1) increased
quality of life rather than a decrease; (2) increased resource utilization rather
than a decrease in accessing resource s; and (3) increased adherence to
treatment regimens rather than noncom pliance with the recommendations of
healthcare professionals. Once more information is known about the conditions

100under which normalization leads to optim um outcomes, nurses will be able to
promote and foster an indivi dual's need for normalcy, consistent with the role of
nursing in Orem’s (1995) t heory of self-care agency. Th is measure, while early
in its infancy and, perhaps, in need of further development, is internally
consistent, apparently valid, and reasonable efficient.
Additionally, this study was able to report some important findings about
normalization and quality of life, thus st rengthening the conceptual framework.
Clearly, normalization does contribute to a positive quality of life. This
contribution occurs in conjunction with either illness intrusiveness or perceived
control. Findings from this study indi cate that moderational effects were not
present for illness intrusiveness or per ceived control so the nature of the
relationship between normalization, perceiv ed control, illness intrusiveness and
quality of life will need further investigation. However, the confirmation of a
relationship between normalization and these va riables is an important first step.

101APPENDIX A: Studies of Normalization fr om the Chronic Illness Perspective

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

1. Schwartz (1957) Not addressed/
Interviews/ Not addressed 20 wives with
psychotic husbands Wives characterized their
husbands' behavior from a normalcy framework No measures
addressed Limited
characteristics of the sample No measures
addressed Findings linked
to examples from the data
2. Davis
(1961) Not addressed/
Interviews/
Not addressed 16 visibly
handicapped
individuals Individuals redefine self
attributes to identify
themselves as normal or
similar to others No measures
addressed Limited
characteristics
of the sample No measures
addressed Findings linked
to examples
from the data
3. Wiener
(1975) Grounded Theory/
Observation and
interviews/ Constant
comparative
analysis 21 individuals
with arthritis Strategies arthritics
develop in order to
tolerate uncertainty Interviews
and
observation Findings
linked to other
research No measures
addressed Findings linked
to examples
from the data
4. Miles (1979) Exploratory/
Semi-structured
interviews/
Not addressed 22 individuals with
multiple sclerosis
and their spouses Characteristics of couples
who normalize versus
couples who dissociate Data
presented is
linked to
coding categories No measures
addressed No measures
addressed Findings linked
to examples
from the data
5. Krulik (1980) Not addressed/
Structured
interview/Not addressed 20 chronically ill
children and their
mothers; 20 healthy children and their
mothers Normalizing tactics Data
presented is
linked to coding
categories Limited
characteristics
of the sample described No measures
addressed Findings are
linked to
examples from the data
6. Anderson (1981) Ethnographic/
Participant-
Observation (3
visits)/ Not addressed 4 families with
chronically ill
children (leukemia
and diabetes) & 12 families with well
children Double bind
communication results
from inconsistencies
between the way parents view their child and the
illness and the way the
child is treated
Interviews
and
observation No measures
addressed No measures
addressed Findings linked
to examples
from the data

102Appendix A continued

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

7. Anderson & Chung
(1982) Ethnographic/
Participant-
Observation (3
visits)/ Not addressed 7 families with a
child experiencing a
long term medical
problem Construction of the illness
experience Interviews
and
observation Findings
linked to other
research No measures
addressed Findings linked
to examples
from the data
8. Anderson
(1986) Comparative;
Phenomenology/ 3-4 In-depth taped
interviews;
Observation/ Not addressed

6 Chinese and 7
Anglo-Canadian families of a
chronically ill child Normalization is
consistent with Western approach to health and
may not match the
priorities of other cultural groups Member
checking; Peer
debriefing;
Interviews and
observation
Findings
linked to other research Peer review Member
checking; Findings linked
to examples
from the data
9. Gerhardt
&
Brieskorn- Zinke
(1986) Not addressed/
2 taped intensive
interviews 1 year apart/
Not addressed 68 individuals with
end-stage renal
failure and their spouses Normalization is a
process of mastery Interviews 1
year apart No measures
addressed No measures
addressed Findings linked
to examples
from the data
10. Mishel & Murdaugh
(1987) Grounded Theory/
Audiotaped data
entered by
researchers after support group
meetings/
Constant comparative
analysis 20 family members
of individuals
undergoing heart
transplantation Family adjustment to
heart transplantation
included redesigning the
dream to meet the challenge of
unpredictability through
immersion, passage and negotiation Data
gathered
over 2 1/2
years; Observation;
Peer
debriefing; Triangulation
Member
checking Descriptions
provided;
Observation;
Limitations addressed;
Peer
debriefing Audit trail; Peer
review Member
checking; Peer
review

103
Appendix A continued
Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

11. Deatrick (1988) Not addressed/
Open-ended taped
semi-structured
interviews/ Classified as
normalizers and
nonnormalizers 15 parents of
children with
osteogenesis
imperfecta Behavioral strategies
used by parents to
achieve normalization Peer
debriefing Description of
sample No measures
addressed Findings linked
to examples
from the data
12. Anderson
Elfert &
Lai
(1989) Phenomenology/
3 Semi-structured
audiotaped
interviews/ Constant
comparative
analysis 15 Chinese and 15
Anglo-Canadian
families with
chronically ill children The goal of normalization
is a western ideal
Material circumstance
may influence the ability to normalize 3 interviews;
Multiple
researchers;
Peer debriefing No measures
addressed Data protocols
used by all
researchers;
Peer review Findings linked
to examples
from the data
13. Dewis
(1989) Descriptive/
One in-depth
audiotaped semi-
structured interview/
Content analysis 15 young people
with spinal cord
injury Efforts to normalize
include: physical
appearance and function,
physical and emotional independence, and social
skills and interpersonal
relationships Peer
debriefing Findings
linked to other
research Peer review;
Coding checks
for consistency Findings linked
to examples
from the data
14. Bossert, Holaday,
Harkins & Turner-
Henson
(1990) Not addressed/
Parental and child
Interviews/ Theoretical coding 365 chronically ill
children age 10-12
years Normalization strategies
pertaining to child and
family life No measures
addressed
Findings
linked to other
research Consensus of
coding Findings linked
to examples
from the data

104Appendix A continued

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

15. Elfert, Anderson & Lai
(1991) Phenomenology/
Unstructured taped in-depth interviews/
Constant comparison
analysis 16 Chinese
families and 15 Euro-Canandian
families with a
chronically ill child Parental perceptions of a
child's illness Member
checking Findings
linked to other research Consensus of
coding Member
checking; Findings linked
to examples
from the data
16. Gagliardi
(1991) Ethnography;
naturalistic case
study/ In-depth taped
interviews and
participant-observation over a 10
week period/
Constant comparative analysis 3 families with a
child experiencing
Duchenne muscular
dystrophy Six themes of families
living with an ill child Bias log kept;
Triangulation
Member checking;
Peer
debriefing No measures
addressed External coding
auditors; Peer
review Member
checking
17. Gagliardi (1991) Ethnography;
naturalistic case
study/ In depth taped
interviews and
participant-observation over a 10
week period/
Constant comparative analysis 3 families with a
child experiencing
Duchenne muscular
dystrophy Six themes of families
living with an ill child Triangulation
Member
checking; Peer
debriefing Description of
sample External coding
auditors; Peer
review Member
checking
18. Keller
(1991) Grounded Theory/
10 unstructured audiotaped
interactive interviews/
Constant comparative analysis 8 men and 1
woman who underwent
Coronary Artery
Bypass Graft Surgery 3 stages of seeking
normalcy after surgery: surviving, restoring and
being fixed Member
checking; Peer
debriefing Findings
linked to one other study Audit trail; Peer
review Member
checking; Findings linked
to examples
from the data

105Appendix A continued
Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

19. Sawyer (1992) Pre-Experimental,
static grouup comparison design/
Feetham Family
Functioning Survey; Family
Profile Inventory 64 mother-child
dyads where the child was diagnosed
with cystic fibrosis Perceptions of family
functioning did not differ between group with ill
child vs group without ill
child

20. Whyte (1992) Ethnography;
Exploratory; Case
study; Life History/
Multiple interviews; Activities of Living
Model; In-depth
taped interview/ Constant
comparative
analysis 4 families caring for
a child with cystic
fibrosis The experience of caring
for a child with cystic
fibrosis and its effect on
family interaction Data
collected
over multiple
points in time Findings
linked to other
research No measures
addressed Findings linked
to examples
from the data
21. Dashiff
(1993) Descriptive/
One time structured
audiotaped
interviews of each parent/
Concept book
analysis 12 parental couples
& adolescent
daughters with
diabetes Parental perceptions:
drawing the family closer;
minimizing the negative
impact on daughters; sacrificing the spousal
relationship and
heightening parental roles; suffering emotional
distress in the parental
role; managing emotional distress through
overseeing distancing,
communicating and
receiving and accessing
support Member
checking with
7
respondents Findings
linked to
previous
research No measures
addressed

Member
checking;
Findings linked
to examples from the data

106Appendix A continued

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

22. Ray & Ritchie (1993) Audiotaped semi-
structured interview; CHIP;
COBI/
Content analysis
29 parents of an ill
child Influences of parental
coping Method
triangulation Findings
linked to previous
research Interrater
reliability assessed for
consistency of
coding Findings linked
to examples from the data
23. Robinson (1993) Grounded Theory/
Repeated in-depth interviews/
Open coding,
Axial coding, Selective coping,
and
Constant comparative
analysis 40 men and women
experiencing spina bifida, muscular
dystrophy, asthma,
allergies, multiple sclerosis, arthritic,
back problems,
heart disease and inflammatory bowel
disease Managing chronic illness
while constructing life as normal: the process and
benefits and costs Data
collected over multiple
points in time Findings
linked to other research No measures
addressed Findings linked
to examples from the data
24. Ferrell, Rhiner, Shapiro &
Dierkes
(1994) Phenomenology/
Structured tape recorded
interviews; FPS/
Content analysis 31 parents of a child
with cancer pain Impact of pain on the
family Peer
debriefing Description of
sample Peer review Findings are
linked to examples from
the data
25. Haase
(1994) Phenomenology/
Audiotaped open-
ended structured
interview/
Step by step
described by Colaizzi 7 Children with
cancer Six theme categories
were identified among
children who had
completed cancer therapyMember
checking;
Peer
debriefing Description of
sample Coding checks Member
checking;
Findings linked
to examples
from the data

107
Appendix A continued
Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

26. Jerret (1994) Phenomenology/
Interviews/
Interpretive
analysis 19 parents from 10
families of a child
with juvenile arthritis Experience of learning to
care for a chronically ill
child Member
checking Findings
linked to other
research Peer review Member
checking;
Findings linked
to examples from the data
28. Edwards-
Beckett &
Cedargren (1995) Qualitative/
Audiotaped
semistructured interviews/
Content analysis 27 fathers and 30
mothers of a child
with myelomeningo-cele Sociocultural context of
different types of family
management styles More than
one coder;
Peer debriefing Description of
sample;
Findings linked to other
research Coding checks Findings linked
to examples
from the data
29. Knafl et al. (1995) Grounded Theory/
Audiotaped semi-structured
interviews/
Narrative analysis; Constant
comparative
analysis 63 families with a
chronically ill child Themes in events
preceding diagnosis Peer
debriefing No measures
addressed Peer review Findings linked
to examples from the data
30. Royer (1995) Grounded Theory/
Open-ended in-
depth interview/
Inductive analysis 35 men and women
diagnosed with a
chronic illness Six behavioral and seven
cognitive normalization
strategies used to
counteract the difficulties
caused by chronic illness No measures
addressed No measures
addressed No measures
addressed Findings linked
to examples
from the data

108Appendix A continued

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

31. Williams (1995) Exploratory/
One time semi-structured
audiotaped
interviews/
Constant
comparative analysis 12 mothers of
daughters with precocious puberty
or Turner syndrome Maternal management of
problems encountered during school, with peers
and at home Peer
debriefing Linked to one
other research study Peer review No measures
addressed
32. Hilton
(1996) Grounded Theory/
5 semi-structured
audiotaped interviews/
Constant
comparative analysis 55 women with early
stage breast cancer
and members of their family
Strategies for getting
back to normal included:
seeing their families as normal, minimizing
disruptions,
deemphasizing sick role demands, reframing
negatives and putting the
cancer behind; Influences on the process 5 interviews
over 1year;
More than 1 researcher;
Member
checking Linked to
other research Audit trail Member
checking;
Findings linked to examples
from the data
33. Jerret & Costello
(1996) Grounded Theory/
Semi-structured
audiotaped interviews over 2
years/
Open coding, axial coding, selective
coding and
constant
comparative
analysis 30 mother and 9
fathers from 30
families where a child was diagnosed
with asthma 3 phases for
accommodating to child's
illness: being out of control, being involved,
and being in control Interviews
conducted
over 2 year period; Peer
debriefing;
Data linked to coding
categories Description of
sample;
Linked to other research Peer review Findings linked
to examples
from the data

109Appendix A continued

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

34. Knafl et al. (1996) Naturalistic/
2 Audiotaped open ended semi-structured
interviews with parents,
ill children and siblings
conducted 12 months
apart/ Inductive content
analysis 63 families where a
child was chronically ill Description of family
management styles Interviews
conducted 12 months apart;
More than
one
investigator Description of
sample No measures
addressed Findings linked
to examples from the data
35. Thorne et al. (1997) Interpretist,
Naturalistic approach/ Interviews/
Constant comparative
analysis 16 nurses
7 parents of children with long
term gastrostomy The meanings of
gastrostomy to parents and health
care professionals Multiple
people interviewed
about same
topic; More than one
researcher No measures
addressed No measures
addressed Findings linked
to examples from the data
36. Clarke- Steffen (1997) Grounded Theory/
3 semi-structured audiotaped interviews/
Constant comparative
analysis 7 mothers,
7 fathers, 6 ill children, 12 siblings
from 7 families with
a child experiencing
cancer Families used 6
strategies to create a new normal routine as
they adapted to the
diagnosis of childhood cancer Member
checking with 2 families Description of
sample; Findings
linked to other
research No measures
addressed Member
checking

110
Appendix A continued
Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

37. Gravelle
(1997) Phenomenology/
Audiotaped
interviews (1st
interview
unstructured and
2nd interview semi-structured/
Giorgi's steps for
data analysis 11 parents of an ill
child (Duchenne
muscular dystrophy,
spinal muscual
atrophy type II;
metachromatic leukodystrophy,
Retts syndrome,
cerebral palsy with microcephay and
respiratory distress Process of facing
adversity Member
checking;
Data
collected on
2 occasions Findings
linked to other
research No measures
addressed Member
checking;
Findings linked
to examples
from the data
39.Murdaugh
(1998) Grounded
theory/Open-ended audiotaped
interviews/Constant
comparative analysis 14 adults diagnosed
with HIV Adjustment to HIV
through achieving a balance (4 stages) Multiple
interviews; Peer
debriefing;
Member checking Description of
sample Peer review Findings linked
to examples from the data
40. Stubble-
field &
Murray (1998) Phenomenology/
Unstructured
audiotaped interviews/Colaizzi
method 15 parents of 12
children who have
undergone lung transplantation Parental perceptions of
living with children who
have undergone lung transplantation Multiple
interviews;
Peer debriefing,
Member
checking Description of
sample Audit trail Findings linked
to examples
from the data; Member
checking
41.Tishel- man &
Sachs (1998) Exploratory/
Semi-structured
interviews/ Constant
comparative
analysis 46 persons with
cancer Persons first become
"nonnormal" before they
become "normally diseased"; redesigning
the concept of normality Member
checking;
Peer debriefing Findings
linked to other
research Peer review Member
checking;
Findings linked to examples
from the data

111Appendix A continued

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

42.Seppanen (1999) Case study/
Interviews and observation over 4
separate periods/
Time series and
content analysis 2 sets of parents of 2
girls (age 3 and 4) diagnosed with
diabetes Six phases of the
parental coping process: disbelief, lack
of information and
guilt, learning of care,
normalization,
uncertainty and reorganization Interviews
and observation/
Data
gathered at
multiple
points in time/ Member
checking Findings
linked to other research Not addressed Findings linked
to examples from the data/
Member
checking
43. Witte & de Ridder (1999) Not addressed/
Support group sessions/
Not addressed 5 children aged 9-13
with HIV infected mothers Coping strategies Not
addressed Not addressed Not addressed Not addressed
44. Hilton,
Crawford & Tarko
(2000) Qualitative
Participatory Action/ Audiotaped semi-
structured interviews/
Open coding; Constant
comparative analysis 10 spouses with
wives diagnosed with breast cancer Men's ways of coping:
focusing on wife's illness and care and
focusing on family to
keep life going. Peer
debriefing Description of
sample Audit trail; Peer
review Findings linked
to examples from the data
45. Johnson (2000) Grounded Theory/
Audiotaped structured telephone
interviews/
Constant
comparative analysis

Mothers of preschool
and elementary school-age children
with mild to moderate
physical disability Parental straddling on
3 levels: past vs present, child as
normal vs disabled,
child vs parent
feelings and issues Not
addressed Findings
linked to other research Not addressed Findings linked
to examples from the data

112Appendix A continued

Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

46. Morse, Wilson & Penrod
(2000) Not addressed/
Participant observation;
Audiotaped
interviews/Content
analysis 17 children with
chronic, severe, life-threatening physical
disabilities at a 6 day
camp The disabled child’s
process of normalizing when away from familyObservation
and interviews Description of
sample Not addressed Findings linked
to examples from the data
47. Rehm & Franck (2000) Interpretive,
ethnography/ Tape recorded
separate semi-
structured open-ended interviews/
Constant
comparative analysis 21 adults and
children from 8 families where an
individual is
diagnosed with AIDS/HIV Long term family goals
and normalization strategies Member
checking Findings
linked to other research Peer review Member
checking; Findings linked
to examples
from the data
48. Antle et al
(2001) Not addressed/
Interview/Content
analysis 105 parents from 86
families where the
mother is HIV
positive Demands of parenting
in families living with
HIV/AIDS Data linked to
coding
categories Description of
sample Not addressed Findings linked
to examples
from the data
49. Guthrie &
Castelnuovo
(2001) Phenomenology/
Audiotaped open-
ended structured
interviews/ Inducted content
analysis 34 adult females with
disability (spinal cord
injury, congenital limb
deficiency, amputation, acquired
brain injury, post-
polio syndrome,
multiple sclerosis,
amyotrophic lateral sclerosis, spina
bifida, dwarfism Disability management
themes Peer
debriefing;
Transcripts
confirmed by interviewees Findings
linked to other
research Coding checks Findings linked
to examples
from the data

113
Appendix A continued
Author/
Date Approach/
Method/
Analysis Number in Study Major Findings Credibilit y Transferability Depend ability Confirmability

50. Jirapaet (2001) Phenomenology/
Maternal Behavioral
Questionnaire, 2
Audiotaped
unstructured in-
depth interviews/ Content analysis 39 low-income, Thai,
HIV-positive mothers exhibiting
successful
adaptation 6 factors identified for use
of internal and external resources to attain their
maternal roles Bias
bracketing Findings
linked to other research Coding checks Findings linked
to examples from the data
51.Scherman
Dahlgred,
& Lowhagen
(2002) Phenomenology/
2 open-ended
interviews over 8 years/
Content analysis 30 adults with
suspected asthma 14 themes describing the
illness experience
including identity Peer
debriefing/
Data collected long
term Description of
sample;
Findings linked to other
research Coding checks
for consensus Findings linked
to examples
from the data

114APPENDIX B: QUESTIONNA IRE (see key on page 143)

INSTRUCTIONS: Please fill in t he answers to the questions below.

1. Age: ______________ 2. Sex: _____
3. Race: _________ __________________ _________
(Caucasian, African American, Am erican Indian, Asian, Other)

4. Are you of His panic origin? _______
5. Education Level (please check the highest level of education completed):
Less than high school _____
High school/ GED _____ Technical school _____
Some college _____ College degree _____ Graduate degree _____ 6. Marital Status (please check the response that describes you): Single _____ Married/Partnered _____ Separated _____ Divorced _____ Widowed _____
7. Medical Diagnoses (please list a ll current illnesses and the approximate
date diagnosed):
Diagnosis Year

8. Family Members Living With You Now (please list family members by
their relationship to you and their ages – for example: son, 20 years):

115Family Member Relationship Age

INSTRUCTIONS: Listed below are a number of statements concerning personal
attitudes and traits. Read each item and dec ide whether the statement is true or
false as it pertains to you personally. Place an “x” in the space under “True”
if you feel it is true or mostly tr ue about you. Place an “x” in the space
under “False” if you feel it is fa lse or mostly false about you.

True False 9. I’m willing to admit it when I make a mi stake. _____ _____
10. I like to gossip at times. _____ _____

11. There have been occasions when I took _____ _____
advantage of someone. 12. I always try to practi ce what I preach. _____ _____
13. I sometimes try to get even rather than
forgive and forget. _____ _____ 14. I never resent being asked to return a favor. _____ _____
15. I have never been irked when people _____ _____
expressed ideas very different from my own.

11616. At times I have really insisted on having _____ _____
things my own way. 17. There have been occasions when I felt like _____ _____ smashing things. 18. I have never deliberatel y said something _____ _____
that hurt someone’s feelings.

INSTRUCTIONS:
For this portion of the questi onnaire, consider your rheumatoid
condition and circle the number that corre sponds to how much your illness or its
treatment interfere with aspects of your life. Under each st atement is a scale
which ranges from Not Very Much (1) to Very Much (7). Circle the choice that
is true FOR YOU.

19. How much does your illness and/or its treatment interfere with your
health?
Not Very Much 1 2 3 4 5 6 7 Very Much
20. How much does your illness and/or it s treatment interfere with your diet
(the things you eat and drink)?

Not Very Much 1 2 3 4 5 6 7 Very Much

21. How much does your illness and/or it s treatment interfere with your work?

Not Very Much 1 2 3 4 5 6 7 Very Much

11722. How much does your illness and/or it s treatment interfere with your active
recreation (e.g., sports)?

Not Very Much 1 2 3 4 5 6 7 Very Much

23. How much does your illness and/or its treatment interfere with your
passive recreation (e.g., r eading, listening to music)?

Not Very Much 1 2 3 4 5 6 7 Very Much

24. How much does your illness and/or its treatment interfere with your
financial situation?
Not Very Much 1 2 3 4 5 6 7 Very Much
25. How much does your illness and/or its treatment interfere with your
relationship with your spouse?

Not Very Much 1 2 3 4 5 6 7 Very Much

26. How much does your illness and/or its treatment interf ere with your sex
life?

Not Very Much 1 2 3 4 5 6 7 Very Much

27. How much does your illness and/or it s treatment interfere with your family
relationships?

Not Very Much 1 2 3 4 5 6 7 Very Much

28. How much does your illness and/or it s treatment interfere with your other
social relationships?

Not Very Much 1 2 3 4 5 6 7 Very Much

118
29. How much does your illness and/or it s treatment interfere with your self-
expression/self-improvement?

Not Very Much 1 2 3 4 5 6 7 Very Much

30. How much does your illness and/or its treatment interfere with your
religious expression?

Not Very Much 1 2 3 4 5 6 7 Very Much

31. How much does your illness and/or its treatment interfere with your
community and civic involvement?

Not Very Much 1 2 3 4 5 6 7 Very Much

32. I frequently attend support group acti vities offered for people with my
condition.
Not at all true 1 2 3 4 5 6 7 Very true
for me for me

33. I treat problems related to my c ondition as part of everyday life.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

34. I am normal except for my condition.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

11935. I pace myself during the day in order to conserve energy.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

36. I always maintain a normal appearance to others in the way I physically
look.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

37. I avoid taking medications in public.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

38. In most ways my life is close to my ideal.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

39. Treatment for my conditi on is part of staying healthy.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

40. I am better off than most people with my condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

41. I have maintained social interactions with others despite my condition.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

12042. I live a normal life.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

43. I like to talk about my condition with others.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

44. I seek as much information as I c an about the progression of my condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

45. The conditions of my life are excellent.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

46. Everybody treats me normally.
Not at all true 1 2 3 4 5 6 7 Very true
for me for me

47. There are worse things than being diagnosed with this illness.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

48. I structure my activiti es to maintain normalcy.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

49. I accept my condition
Not at all true 1 2 3 4 5 6 7 Very true for me for me

121

50. I engage in activities such as exercise to feel normal.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

51. I choose to skip more trivial activi ties so that I have the energy to
participate in activities that I really value.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

52 . I am satisfied with my life.

Not at all true 1 2 3 4 5 6 7 Very true
for me for me

53. Treatment for my condition interferes with my normal life.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

54. I’m like everyone else – everyone has to contend with something in life.
Not at all true 1 2 3 4 5 6 7Very true for me for me

55. I maintain a normal appearance in the way I behave.
Not at all true 1 2 3 4 5 6 7Very true for me for me

56. Keeping a routine is important to me.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

12257. Treatment is part of my normal life.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

58. Dealing with my condition is part of the daily routine.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

59. I haven’t changed the things I do since being diagnosed with this
condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

60. I hide the fact that I have this condition from most other people.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

61. I tell others when I have pain.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

62. I try to hide any outward i ndications of my condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

63. I’m able to incorporate the treatment for my condition into my normal life
activities.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

12364. I freely tell other people about my condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

65. I avoid situations with similar othe rs that remind me of my condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

66. So far I have gotten the impor tant things I want in life.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

67. I give excuses for any accident s in order to hide my condition.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

68. I behave as if I’m in pain when I have pain.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

69. I avoid using any helpful aids t hat call attention to my condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

70. I avoid situations that may resu lt in feelings of embarrassment.
Not at all true 1 2 3 4 5 6 7 Very true for me for me

12471. I only tell those closest to me about my condition.

Not at all true 1 2 3 4 5 6 7 Very true for me for me

72. If I could live my life over , I would change almost nothing.

Not at all true 1 2 3 4 5 6 7 Very true
for me for me

INSTRUCTIONS: Below are statements with whic h you may agree or disagree.
Using the scale below the question rangi ng from (1) strongly disagree to (5)
strongly agree, circle the c hoice that is true for you.

73. It is difficult for me to find effective solutions for problems that occur with
managing my medical condition.

Strongly 1 2 3 4 5 Strongly Disagree Agree

74. I find efforts to change things I don’ t like about my medical condition are
ineffective.

Strongly 1 2 3 4 5 Strongly Disagree Agree

75. I handle myself well with res pect to my medical condition.

Strongly 1 2 3 4 5 Strongly Disagree Agree

76. I am able to manage things related to my medical condition as well as
most other people.

Strongly 1 2 3 4 5 Strongly Disagree Agree

125

77. I succeed in the projects I undertake to manage my condition.
Strongly 1 2 3 4 5 Strongly Disagree Agree

78. Typically, my plans for managing my condition don’t work out well.
Strongly 1 2 3 4 5 Strongly Disagree Agree

79, No matter how hard I try, managing my condition doesn’t turn out the way
I would like.

Strongly 1 2 3 4 5 Strongly Disagree Agree

80. I’m generally able to accomplish my goals with respect to managing my
condition.

Strongly 1 2 3 4 5 Strongly
Disagree Agree

81. My condition is controlling my life.
Strongly 1 2 3 4 5 Strongly Disagree Agree

82. I would feel helpless if I couldn’t rely on other people for help with my
condition.

Strongly 1 2 3 4 5 Strongly Disagree Agree

83. I am concerned that medicines cannot help me.
Strongly 1 2 3 4 5 Strongly Disagree Agree

126

84. The side effects of medicines are often worse than the disease.

Strongly 1 2 3 4 5 Strongly Disagree Agree

85. I often do not take my medicines as directed.

Strongly 1 2 3 4 5 Strongly Disagree Agree

86. No matter what I do, or how hard I try, I just can’t seem to get relief from
my symptoms.

Strongly 1 2 3 4 5 Strongly Disagree Agree

87. I am not
coping effectively with my condition.
Strongly 1 2 3 4 5 Strongly Disagree Agree

88. It seems as though fate and other fa ctors beyond my control affect my
condition.

Strongly 1 2 3 4 5 Strongly Disagree Agree

127
INSTRUCTIONS: For this portion of the questi onnaire, circle the number that
corresponds to what extent you’ve fe lt the feeling or emotion during the PAST
FEW WEEKS . Under each feeling or emotion is a scale which ranges from Very
slightly or not at all (1) to Extremel y (5). For the question s below, circle the
choice that is true FOR YOU .

89. To what extent have you felt interested during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

90. To what extent have you felt distressed during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

91. To what extent have you felt excited during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

92. To what extent have you felt upset during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

93. To what extent have you felt strong during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

12894. To what extent have you felt guilty during the past few weeks?

1 2 3 4 5
Very slightly A little Moderately Quite a bit Extremely
Or not at all

95. To what extent have you felt scared during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

96. To what extent have you felt hostile during the past few weeks?

1 2 3 4 5
Very slightly A little Moderately Quite a bit Extremely
Or not at all

97. To what extent have you felt ent husiastic during the past few weeks?
1 2 3 4 5
Very slightly A little Moderately Quite a bit Extremely
Or not at all

98. To what extent have you felt proud during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

99. To what extent have you felt irritable during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

129100. To what extent have you felt alert during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

101. To what extent have you felt ashamed during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

102. To what extent have you felt inspired during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

103. To what extent have you felt nervous during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

104. To what extent have you felt determined during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

105. To what extent have you felt attentive during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

130106. To what extent have you felt jittery during the past few weeks?

1 2 3 4 5
Very slightly A little Moderately Quite a bit Extremely
Or not at all

107. To what extent have you felt active during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

108. To what extent have you felt afraid during the past few weeks?
1 2 3 4 5 Very slightly A little Moderately Quite a bit Extremely
Or not at all

INSTRUCTIONS:
On the scales below, mark an X on the lines to depict how
much fatigue and pain you experienced in the past week.
109. How much of a problem has unus ual fatigue or tiredness been for you
OVER THE PAST WEEK? Place a mark (X) on the line below:
Fatigue is Fatigue is a Not a Problem_____________________ _____________________ Major
Problem 110. How much pain have you had because of your condition IN THE PAST
WEEK? Place a mark (X) on the line below:

No Pain_________________ _____________________ ____Pain as Bad
As it Could Be

131
INSTRUCTIONS: Listed below are words considered to be opposites. Place an
“X” on the blank that most closely repr esents your perception of yourself in
relationship to the words.

Myself

111. hard ____:____:____:____:____:____:____ soft

112. good ____:____:____:____:____:____:____ bad

113. dependent ____:____:____:____:____: ____:____ independent

114. unfair ____:____:____:____:____:____:____ fair

115. fast ____:____:____:____:____:____:____ slow

116. cold ____:____:____:____:____:____:____ hot

117. large ____:____:____:____:____:____:____ small

118. heavy ____:____:____:____:____:____:____ light

119. dull ____:____:____:____:____:____:____ sharp

120. dirty ____:____:____:____:____:____:____ clean

132
INSTRUCTIONS: Listed below are words considered to be opposites. Place an
“X” on the blank that most closely repr esents your perception of most people who
are sick in relationship to the words.

Most Persons Who Are Sick

121. s harp ____:____:____:____:____:____:____ dull

122. fair ____:____:____:____:____:____:____ unfair

123. light ____:____:____:____:____:____:____ heavy

124. clean ____:____:____:____:____:____:____ dirty

125. slow ____:____:____:____:____:____:____ fast

126. hard ____:____:____:____:____:____:____ soft

127. cold ____:____:____:____: ____:____:____ hot

128. small ____:____:____:____:____:____:____ large

129. independent ____:____: ____:____:____:____:____ dependent

130. good ____:____:____:____:____:____:____ bad

133
INSTRUCTIONS: Circle the answers to the questions below.

131. How many close friends would yo u say you have? That is, people that
you feel at ease with, can talk to about private matters, and can call on for
help?

None 1 or 2 3-5 6-9 10 or more

132. How many relatives do you have that you feel close to?
None 1 or 2 3-5 6-9 10 or more
133. How many people do you know who you feel understand your condition?
None 1 or 2 3-5 6-9 10 or more

INSTRUCTIONS:
For this portion of the questi onnaire, circle the number that
corresponds to the amount of difficult y you experience in doing these tasks.
Under each statement is a scale which r anges from without ANY difficulty (1) to
UNABLE to do (4). On the questions below , circle the choice that is true FOR
YOU.
134. AT THIS MOMENT, are you able to dress yourself, including tying
shoelaces and doing buttons?
1 2 3 4 Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

134135. AT THIS MOMENT, are you able to get in bed and out of bed?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

136. AT THIS MOMENT, are you able to lif e a full cup or glass to your mouth?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

137. AT THIS MOMENT, are you able to walk outdoors on flat ground?
1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

138. AT THIS MOMENT, are you able to wash and dry your entire body?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

139. AT THIS MOMENT, are you able to bend down to pick up clothing from
the floor?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

135140. AT THIS MOMENT, are you able to turn regular faucets on and off?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

141. AT THIS MOMENT, are you able to get in and out of a car, bus, train or
airplane?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

142. AT THIS MOMENT, are you able to walk two miles? 1 2 3 4 Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

143. AT THIS MOMENT, are you able to participate in sports and games as
you would like?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

144. AT THIS MOMENT, are you abl e to get a good night’s sleep?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

136145. AT THIS MOMENT, are you able to deal with feelings of anxiety or being
nervous?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do
146. AT THIS MOMENT, are you able to deal with feelings of depression or
feeling blue?

1 2 3 4
Without ANY With SOME With MUCH UNABLE Difficulty Difficulty Difficulty to do

INSTRUCTIONS: Listed below are statements that describe how people may
choose to deal with chronic illness. Under each statement is a scale which
ranges from (1) –“I usually don’t do this at all” to (4)– “I usually do this a lot”. For
the questions below, circle the answer t hat indicates how frequently you use the
tactic to cope with yo ur chronic condition.

IN DEALING WITH MY MEDICAL CONDITION:
147. I try to grow as a person as a result of the experience.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

148. I turn to work or other substitute activities to take my mind off things.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

137149. I concentrate my effort s on doing something about it.

1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

150. I say to myself “this isn’t real”.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

151. I admit to myself that I can’t deal with it, and quit trying.

1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

152. I accept that this has happened and that it can’t be changed.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

153. I focus on dealing with this problem, and if necessary let other things slide
a little.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

154. I try to come up with a st rategy about what to do.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

138155. I do what has to be done, one step at a time.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

156. I look for something good in what is happening.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

157. I refuse to believe that it has happened.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medi um amount this a lot

158. I go to movies or watc h TV, to think about it less.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

159. I daydream about things other than this.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

160. I just give up trying to reach my goal.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

139161. I take additional action to tr y to get rid of the problem.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

162. I think about how I might best handle the problem.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot
163. I get used to the idea that it happened.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

164. I put aside other activities in order to concentrate on this.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

165. I accept the reality of the fact that it happened.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

166. I reduce the amount of effort I’ m putting into solving the problem.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

140167. I learn something from the experience.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

168. I give up the attemp t to get what I want.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot
169. I act as though it hasn’t even happened.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

170. I keep myself from getting distra cted by other thoughts or activities.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

171. I sleep more than usual.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

172. I try hard to prevent other things from interfering with my efforts at dealing
with this.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

141173. I pretend that it hasn’t really happened.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

174. I make a plan of action.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot
175. I take direct action to get around the problem.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

176. I try to see it in a different li ght, to make it se em more positive.

1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit m edium amount this a lot

177. I learn to live with it.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot
178. I think hard about what steps to take.
1 2 3 4
I usually don’t do I usually do this I usually do this a I usually do this at all a little bit medium amount this a lot

142I WOULD LIKE INFORMATION ABOUT TH E RESULTS OF TH IS RESEARCH
STUDY:
Y E S N O

THANK YOU FOR YOUR PARTICIPATION!
ADDITIONAL COMMENTS:

________________________ __________________ ______________________
________________________ _____________________ ___________________
________________________ __________________ ______________________
________________________ __________________ ______________________
________________________ __________________ ______________________
________________________ _____________________ ___________________
________________________ __________________ ______________________
________________________ __________________ ______________________
________________ PLEASE MAIL TO:
CYNTHIA O’NEAL, 3601 4TH STREET, STOP 6221, LUBBOCK, TX 79430-6221

143Key For Questionnaire
Measure Item Numbers in Questionnaire
Demographic Information 1-8

Social Desirability 9-18

Illness Intrusiveness Rating Scale 19-31

Normalization 32-37; 39-44; 46-51; 53-65; 67-71

Life Satisfaction Scale 38, 45, 62, 66, 72

Perceived Medical Condition Self Management Scale 73-80

RAI 81-88

PANAS 89-108

MDHAQ 109-110, 134-146

Sick Role Acceptance Measure 111-130

Social Ties 131-133

COPE: Positive Reinterpretation 147, 156, 167, 176

COPE: Mental Disengagement 148, 158, 159, 171

COPE: Active Coping 149, 155, 161, 175

COPE: Denial 150, 157, 159, 169

COPE: Behavioral Disengagement 151, 160, 166, 168

COPE: Acceptance 152, 163, 165, 177

COPE: Suppression of Competing Activities 153, 164, 170, 172
COPE: Planning 154, 162, 174, 178

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