PAIN, COPING STRATEGIES, AND QUALITY OF LIFE

IN ARAB AMERICAN CANCER PATIENTS

by

NIJMEH MOHAMMED HUSSEIN AL-ATIYYAT

DISSERTATION

Submitted to the Graduate School

of Wayne State University,

Detroit, Michigan

in partial fulfillment of the requirements

for the degree of

DOCTOR OF PHILOSOPHY

2009

MAJOR: NURSING (Cancer Pain Management) Approved by: Advisor Date

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UMI Number: 3352199

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DEDICATION

I dedicate this dissertation to the loving memory of my father Mr. Mohammed Hussein Al-

Atiyyat. I was fortunate to have him as my father; his exemplary devotion, unrelenting love,

support, and sacrifice carried me through my life's journey and certainly remains my steadfast

inspiration though this project. I am indebted to my father for his belief in me and his

unconditional support of my dreams and the life choices I have made. I will forever remember

the ways in which he nurtured my sense of curiosity about the world and how he allowed me to

explore life even in ways that often made him uncomfortable. He is my role model in life and all

that it entails. I will always cherish his deep and rare sense of wisdom, as well as his innate

kindness and capacity to love.

I am also indebted to my mother for her indescribable ability to love, care, and stand up

for her family. I know no other person who has her sense of motherhood, honor, and fighting

spirit. She has always maintained the rare mix of courage and simplicity that has kept our family

together. The time I have spent and will spend in her graceful presence will continue to sustain

me in the years to come.

Last but not least, I am forever indebted and grateful to Allah, the One and the Glorious,

who always filled my life with uncountable blessings. Above all, he gave me a strong faith that

allowed me to face with joy the life with which he honored me. No words can describe my deep

sense of gratitude for his positive influences in my life.

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ACKNOWLEDGEMENTS

"Thank You, God, for being with me on my journey through life.

You have cared for me from the beginning, and I

Know that your love holds me close and keeps me on

The right path with each new step I take."

It is with pride, love, honor, and humility that I acknowledge first and foremost, God, for

providing me the wisdom and courage to accomplish the tasks that he has set out for me to do.

And so it is a "Celebration of Gratitude" that I complete the Wayne State, College of Nursing

doctoral program with this dissertation on cancer pain management. In part, with this research, I

also honor and thank my cancer patients for whom I have had the most pleasure in loving and

caring. Your courage and endless will to live life to its fullest has brightened my journey through

life. I am more aware of God's Light. Thank you for illuminating my soul.

I would like to express my profound appreciation to the individuals who helped me

complete this dissertation. First of all, I would like to thank Dr. April Vallerand, my committee

chair, advisor, mentor, and best friend, for her guidance and continuous support throughout the

whole dissertation process. Her diligence and commitment to my success, her careful reading,

comments, and feedback throughout the whole process - all put me one step closer each time to

completing this endeavor. Her genuine interest and practical approach kept me focused, while at

the same time not losing sight of the bigger picture. Her perspectives were enriching as were her

questions and brainstorming sessions where she helped clarify my concepts and consequently my

writing. I appreciate her prompt responses and willingness to meet and support me despite her

busy schedule, often on a short notice. I value her qualities as a mentor who always taught me

how to be a true scholar. I will always cherish my experience with her. No words can describe

my deep sense of gratitude for her positive influences in my life.

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I want to express my deepest gratitude to Dr. Stephanie Schim, who was graciously

accepted the position of co-chairing my dissertation, so that I could work with Dr. Vallerand. It

meant the world to me. In addition, there is not enough admiration and appreciation in words to

express my gratitude to Dr. Schim, for her mentorship, guidance, and meticulous teachings of the

nursing theory. Her discussions and openness, as well as her natural tendency to nurture and

support, helped me through difficult conceptual times! Each time we talked she instilled in me

the courage and enthusiasm to go on. I will always value the experience I gained through

working with her.

I would like to acknowledge Dr. Hossein Yarandi, who was personally committed to

supporting me during the analysis stage, and then throughout the whole process. His insightful

feedback, rich comments, and patience helped me to gain much depth and understanding about

how statistics translate into theory and vice versa. I enjoyed learning from our discussions of the

analyses he guided me through and from each comment he graciously wrote on the pages he so

patiently read. I especially enjoyed his sense of humor and his ability to make me laugh at

myself, an event that usually signified I had learned something new.

I would also like to acknowledge Dr. Kimberly Campbell-Voytal, who agreed to serve on

my committee and did so with enthusiasm and commitment. I appreciate her feedback and

especially her encouraging smiles each time we officially met. Her insightful feedback, rich

comments, and patience helped me to gain much depth and understanding about acculturation

process.

I would also like to acknowledge the College of Nursing staff and faculty specially, Dr.

Rosalind Peters, Dr. Helen Krouse, Dr. Feleta Wilson, Dr. Jean Davis, Dr. Stephen Cavanagh,

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Dr Nancy Artinian, Dr. Judith Fry-McComish, Dr. Marilyn Oermann, Dr. Karen Aroian,

and Dr. Linda weglicki. I would also like to acknowledge Dr Bulent Ozkan, Dr. Mark Luborsky,

and Dr. Sherylyn Briller.

I wish to acknowledge the Graduate School and the College of Nursing for the Thomas C.

Rumble University Graduate Fellowship financial scholarship that supported my entire doctoral

study. I wish to acknowledge the Midwest Nursing Research Society, and WSU chapter

(Lambda) of Sigma Theta Tau International for funding this project with a dissertation grant.

I would like to express my deepest gratitude to my brothers and sisters for being available

whenever I need them! Sometimes they were challenging, but always they were supportive “on

their own way” I am grateful for their patient sacrifices and for being proud of me just the way I

am.

No project of this magnitude is possible without a group of very special people. Nothing

can replace the sincere friends who brought richness into my life during this study. I am

fortunate to have been surrounded by the generosity, energy, and creativity of Yousif Al Horani,

whose understanding, help, and support never stopped throughout the challenging years of my

graduate studies. I will always cherish his friendship. I can't imagine being able to accomplish

this endeavor without him. I owe him much. Nadera Turjman, and Jenine Muller are also very

special friends. It is a privilege and an honor to have friends with their rare traits. The support

they extended to me emotionally and logistically sustained me I have certainly enjoyed the gift

of their presence in my life. I would like to acknowledge my very dear friend Dr Prem

Ramakrishnan, who is a role model of strength and perseverance. I am grateful to him for

keeping my company over the phone during the initial stages of my study. He selflessly shared

his experiences with me, which often meant that he spared me from having to figure out

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technicalities that he had already encountered. I am grateful for his encouraging spirit every time

we talked. I am also fortunate to have Salah Alzaiti, Ala’a Geath, Abir Kattan, Hamad Al

Zakwani, Mohmmed Nofal, Amal Darweesh, Dr Faten Salti, and Moawiya Ali as friends. They

helped me during difficult times, and during the translation and back translation process of my

tools, as well as during the data collection. I am also fortunate to have met and come to know Dr

Majd Mrayyan, Khaleel Hassanat, and Marwan Ali. They all made a lot of things so much easier

with their kindness, cheerfulness, and caring attitudes.

I would also like to acknowledge my College of Nursing colleagues in particular Ahmad

Aboshaiqah, Sukaina Al-Zyoud, Hayan Al Haj, Deborah Slago, Janean Monahan, Julia Paul, and

Jamie Crawley.

Last but not least, I would like to acknowledge those who helped me often for no reason

other than their kind and giving nature. The men and women I met in the hospital and mosques

and the individuals of the Arab American community who enriched my experience and taught

me so much, especially during my data collection; they never lost their generous nature and their

ability to make a person feel right at home. To all I express my deepest appreciation.

"The events of the future will be for my soul's unfoldment,

just as the events of the past have brought me

where I am today."

Unity

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TABLE OF COTETS

Page

DEDICATION ………………………………………………………………...……….…………ii

ACKNOWLEDGMENTS ………….………………………………...………………………….iii

LIST OF TABLES ……………………………………………………………………….……....ix

LIST OF FIGURES ……………………………………………………………………………....x

CHAPTERS

CHAPTER 1 – Introduction……………………………………………………………………....1

Introduction ………………………………………………………………………….....…1

Problem and Background …………………………………………………………………2

Significance for Nursing …...…………………………………………………………..…9

Conceptual Framework …………………………………………………………………...9

CHAPTER 2 – Review of the Literature…………………………………………………...……27

Acculturation ………………………………………………………………………….....28

Beliefs ……………………………………………………………………..………….…48

Cancer Pain and Coping Strategies …………………………….………………………..61

Cancer Pain and Quality of Life………………………………...………..……...…........77

CHAPTER 3 – Methods …………………………………………………………………….…102

Sample ………………………………………………………………………….………106

Procedure ………………………………………..……………………………….…….108

Human Subjects …………………………………………………………………..……109

Data Management ……………………………………………………………………...110

Data Analysis …………………………...……………………………………………...111

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Measures …………………………………………………………………………….…114

CHAPTER 4 – Results……………………………………………………………………...….123

Sample Characteristics……………………………………………………………….... 124

Descriptive Statistics …………………………………………………………………...126

Correlation …………………………………………………………………………..…131

Model Testing –SEM- …………………………………………………………….……135

CHAPTER 5 – Discussion ……………………………………………………………………..139

Research Findings ………………………………………………………………...……139

Testing Model Fit…………………………………………………………………...…..153

Conclusions………………………………………………………………..……………156

Limitations……………………………………………………………………….……..157

Implications and Recommendation………………………………………..…….……..159

APPENDICES…………………………………………………………………...……………. 167

APPENDIX A- Figures …………………….………………………………….…….…168

APPENDIX B- Tables………………………………………………………….………174

APPENDIX C- Letters of Agreement ………………………...………..………...……189

APPENDIX D- HIC Approvals ……………………………………………….…….…190

APPENDIX E- Questionnaires…………………………………………………………192

APPENDIX F- Description of QLI Scoring...……………………………………….…193

APPENDIX G- Information Sheet………………………………………….……….…194

REFERENCES ………………………………………………………………………..…….…197

ABSTRACT …………………………………………………………………………………...235

AUTOBIOGRAPHICAL STATEMENT ……………...……………………………..…..……237

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LIST OF TABLES

TABLE PAGE

Table 1: Quality of Life Domains ……………………………………………………...………174

Table 2: Settings ……………………………………………………………………….………175

Table 3: Study Variables and Measurements ……………………………….………...………..176

.

Table 4.0: Sample Demographic Characteristics ………………………………….….………..177

Table 4.1: Sample Demographic Characteristics (Employment)…………………….…..…….178

Table 4.2: Sample Demographic Characteristics (Length of Stay)………………..…………...178

Table 4.3: Sample Demographic Characteristics (Health Insurance)…………………..………178

Table 4.4: Sample Demographic Characteristics (Response Language)……………………….179

Table 4.5: Sample Oncological Characteristics …………………………………………….….180

Table 5.0: Instruments’ Psychometrics (Arabic Version)………………………...…………….181

Table 5.1: Acculturation Levels ………………………………………………………………..181

Table 5.2: RPMI-Groups ………………………………………………………………………181

Table 5.3: Integrities Means (SD) ……………………………………………………………..182

Table 5.4: Correlations between Pain and Cognitive Coping .....................................................183

Table 5.5: Correlations between Pain and Quality of Life …………………………………….184

Table 5.6: Correlations between Pain and Coping among the 4 Groups of Analgesic Use……185

Table 5.7: Gender * RPMI (Analgesic Use) Cross tabulation…………………………….……186

Table 5.8: Mediate the Relationship between Cancer Pain and Integrities………….…………187

.

Table 5.9: Relationship between Behavioral and Cognitive Coping……………………….…..188

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LIST OF FIGURES

FIGURE PAGE

Figure 1: Representation of the Substruction of Adaptation to Cancer Pain (ACP) from Roy

Adaptation Model (RAM) ……………………………………………………………………..169

Figure 2: Adaptation to Cancer Pain (ACP) Model (Theoretical Level)……………………….170

Figure 3: Diagram of the Adaptation to Cancer Pain model (ACP) without Standardized

Regression Weights…………………………………………………………………………….171

Figure 4: Testing Model Fit of the Adaptation to Cancer Pain Model with Standardized

Regression Weights…………………………………………………………………………….172

Figure 5: Diagram of the Alternative Model with Standardized Regression Weights ……...…173

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CHAPTER ONE

INTRODUCTION

Cancer pain is a serious health problem, and is one of the most expensive public health

issues in the United States costing in excess of 70 billion dollars annually (AHRQ, 2008). The

prevalence of cancer-related pain has been estimated to be 30 to 50% in patients under chronic

treatment and more than 70% in patients with advanced disease; however, as the cancer

progresses this percentage increases to between 65% and 85% (Payne, 2007). Pain is the most

common symptom experienced by cancer patients, and it affects all dimensions of their quality

of life. Consequently, unrelieved cancer pain is a critical issue resulting in physiological,

psychosocial, economic consequences and over all diminished quality of life (Vallerand,

Templin, Hasenau, & Riley-Doucet, 2007). At the same time, approximately 95% of cancer

patients could be free of significant pain if their pain were managed effectively (Cleeland, 2006).

Cancer treatments have increased longevity (Cleeland, 1991) and thus increased the

length of time that patients must cope with pain. Cancer pain has negative effects on mood and

physical and social functioning and decreases quality of life (Strang, 1998). Therefore, studies to

address pain, coping strategies, and quality of life among cancer patients are a priority (Green et

al., 2003). There is limited research about this topic in other cultures. Arab-Americans are the

least-studied ethnic group in the United States (Nassar-McMillan & Hakim-larson, 2003; Salari,

2002), despite their numbers, and the many indications that their culture predisposes them for

high acculturative stress (Hattar & Meleis, 1995; Nassar-McMillan & Hakim-larson, 2003). Very

little has been published about their health status, behaviors, practices, and beliefs. Even less is

known about Arab American cancer incidence and mortality (Shah, Ayash, Pharaon, & Gany,

2007). Data about pain or cancer pain of Arab Americans is remarkably absent. However, based

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on the findings of an integrative literature review of patient-related barriers to effective cancer

pain management (Al-Atiyyat, 2008) no studies have documented cancer pain management in

Arab American patients. Therefore, the purposes of this study were to examine the relationships

among cancer pain, coping strategies, and quality of life among Arab American adults with

cancer, and to test the Adaptation to Cancer Pain (ACP) model (Figure 3).

STATEMENT OF PROBLEM

What is the influence of cancer pain and the use of behavioral and cognitive coping on

the quality of life among Arab American cancer patients in United States?

BACKGROUND AND SIGNIFICANCE

Prevalence of Cancer Pain

In cancer patients, pain is one of the most feared and burdensome symptoms. Reports on

the prevalence of pain in cancer patients draw attention to high figures that ranged from 52% to

77% (Reid & Forbes, 2007), which illustrates that this problem has not been solved. These high

prevalence figures contrast sharply with the rapidly increasing interest in pain and pain relief in

the past decade. Apparently, greater insight into the pathophysiological mechanisms of pain and

the wider availability of antinociceptive therapies, such as opioids, and adjuvant analgesics, has

not influenced the prevalence of pain in cancer patients. Moreover, the World Health

Organization (WHO) introduced a pain ladder in 1986 that has been accepted worldwide (WHO,

1998). Combined with appropriate dosage guidelines, tools to provide adequate pain relief in

70%–90% of the patients are available (Caraceni et al., 2004). Despite the clear WHO

recommendations, cancer pain still is a major problem. The increasing number of cancer

survivors who live to an advanced age means that it is of paramount importance to reduce the

prevalence of pain at all stages of the disease process.

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Data from around the world support the conclusion that many patients with cancer still

receive inadequate analgesics and live with unacceptable levels of pain (Beck & Falkson, 2001;

Ivanova et al., 2005; Lai et al., 2002; Vallerand, Templin, Hasenau, & Riley-Doucet, 2007;

Wang et al., 2006). Moreover, particular subgroups of patients have been found to be at

increased risk for underestimation and undertreatment of pain, including the elderly, patients of

minority ethnic origins, and women (Im et al., 2008; Vallerand, Hasenau, Templin, & Collins-

Bohler, 2005). It can be concluded that there are many factors contributing to how patients’

cancer pain is managed which requires further investigation.

Prevalence of Cancer among Arab-American in United States

Arabs are those who speak Arabic as their native tongue and who identify themselves as

Arabs. In 2000, the U.S. Census Bureau counted nearly 1.2 million Arabs, compared with

860,000 in 1990 and 610,000 in 1980 (U.S. Census Bureau, 2003). According to the Arab

American Institute, the Census Information Center (CIC) designee to analyze Arab American

community data, census figures account for only a third of a total Arab American population of

3.5 million (Arab American Institute, 2004; Schwartz et al., 2004). While Arab Americans live

in all 50 states, the majority reside in California (715,000), Michigan (490,000), New York

(405,000), Florida (255,000), and New Jersey (240,000). Approximately 94% of Arab American

immigrants live in metropolitan areas (Arab American Institute, 2004).

Arab-Americans are one of the least studied ethnic groups in the United States, despite the

fact that Arabs have been immigrating to the United States for over a century and today have

significant numbers of members living in metropolitan areas. The Detroit metropolitan region,

especially Dearborn, attracted a steady stream of Arab immigrant after 1965 and may have the

largest number of recent Arab immigrants. Arab-Americans - like many minority groups - are

geographically concentrated. They are also more likely than other Americans to live in

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metropolitan areas. Thirty-six percent of Arab-Americans are found in ten cities, primarily

Detroit, New York, or Los Angeles (El-Badry, 1994).

The majority of the published data has emerged from Michigan, home to the second

largest Arab American community. Of the 1,553 cancer mortalities from 1985 to 2001 for people

of Arab ancestry in Michigan, the leading cause of death for Arab American men was lung

cancer and the leading cause of death for Arab American women was breast cancer, contrasted

with lung cancer for both men and women in the general U.S. population (Darwish-Yassine, &

Wing, 2005; American Cancer Society, 2005). The other top sites of cancer mortality among

Michigan Arabs, in descending order of number of deaths, include colorectal, pancreas,

gastrointestinal, Non Hodgkin’s lymphoma, leukemia, prostate, and brain/central nervous system

(Darwish-Yassine, & Wing, 2005). The few studies published concerning health care access

barriers experienced by Arab American immigrants indicate that lack of acculturation, language

barriers, societal stigma against Arabs, concerns about confidentiality, and lack of public health

related knowledge impede health care access and services utilization (Arab American Institute,

2004; Management Sciences for Health; 2004; Al-Omran, 2005). The aftermath of September

11th damaged previously established trust between Arab American immigrants and government

agencies, causing Arab American immigrants to stay away from any public service, including

health care that appears to be connected to the U.S. government (The New York Immigration

Coalition, 2003).

Patient Barriers to Cancer Pain Management

Attitudinal barriers to pain management are important as they are often based on

misconceptions about pain and pain management. Patients who experience pain might choose

not to make use of resources available to manage pain because of erroneous beliefs, which

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include mainly eight attitudinal barriers (concerns about addiction, fatalism, tolerance,

monitoring which means that persons are concerned that analgesics can mask or block new

symptoms, thus preventing them from monitoring what is going on in their body, complaining,

distracting, immune function and side effects) to cancer pain management have been identified

and shown to have a negative impact on analgesic use, pain severity, and quality of life

(Gunnarsdottir, Serlin, & Ward, 2005). These barriers have been elicited by patients’ self-report

on the Barriers Questionnaire-II (BQ-II) (Gunnarsdottir, Donovan, Serlin, Voge, & Ward, 2002).

These barriers were found to contribute to patients’ reluctance to report pain, as well as their use

of prescribed analgesics, which, in turn, contributed to inadequate pain control. This review

documents the need for an evaluation of the barriers to cancer pain management in Arab

American patients, as well as the relationships between these barriers and demographic

characteristics, and pain characteristics. In addition, since no studies were identified that

examined the relationships between barriers and acculturation levels, this study will examine this

relationship. Given the fact that over 3.5 million Arab Americans of various acculturation levels

are living in the U.S. today (Arab American Institute, 2004; Schwartz et al., 2004), the findings

from this study should provide useful information for clinicians to use in caring for these patients

with cancer pain.

Coping with Cancer Pain in Arab American Population

Cancer pain is a complex, multidimensional phenomenon that originates from sensory

stimuli and is altered by an individual’s memory, expectations, and emotions (Roy, 2005).

Cancer pain impacts various dimensions of a person’s physical, psychological, social, spiritual

health and well-being (Vallerand, Templin, Hasenau, & Riley-Doucet, 2007). Challenges to daily

activities due to cancer pain may produce significant effects on quality of life, leading to

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maladaptation. Helping cancer patients to cope with pain is a major goal of professional nursing.

Enhancing behavioral and cognitive coping may be an important strategy in providing holistic

care for optimum health and pain management that leads to better quality of life. However,

nursing research examining Arab American cancer patients’ pain coping experience is

overwhelmingly sparse. Many studies have examined associations between use of coping

strategies and adaptation in chronic nonmalignant pain (Cannella, Lobel, Glass, Lokshina, &

Graham, 2007; Dysvik, Natvig, Eikeland, & Lindstrom, 2005; Ersek, Turner, & Kemp, 2006;

Jensen, Keefe, Lefebvre, Romano, & Turner, 2003; Keefe, Rumble, Scipio, Giordano, & Perri,

2004; Turk, 2004). Only few studies investigated this relationship in cancer patients with pain

(Barbour, McGuire, & Kirchoff, 1986; Bishop & Warr, 2003; Donovan & Dillon, 1987; Lin,

1998; Kwekkeboom, 2001; Wilkie, Lovejoy, Dodd, & Tesler, 1988). These studies were

conducted in Western countries, mainly the United States. Findings from non cancer pain studies

may not be generalized to patients with cancer particularly to patients with different cultural

backgrounds. It is noteworthy that the meaning of pain in chronic nonmalignant conditions and

pain associated with cancer is different. For chronic nonmalignant pain such as chronic arthritis,

the meaning ascribed to pain by Western patients is relatively nonthreatening and the cause of

recurring pain can be easily understood. In contrast, Western patients interpret cancer pain as a

sign of progression of disease, mortal danger, or impending death. As pain recurs during the

course of the illness, patients’ interpretations are characterized by increased uncertainty (Gill, &

Babrow, 2007). There are no doubt that culture influences patients’ cognitions and responses to

pain even within the same culture. Thus, these findings may not hold true for patients in Eastern

cultures. In other words our brains and minds are shaped by our experiences, which mainly occur

in the context of the culture in which we develop and live. Psychologists have provided abundant

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evidence for diversity of human cognition and behavior across cultures and demonstrated that

one's cultural background can influence cognitive functions. It is sometimes assumed that

perceptual and attentional mechanisms that have been uncovered in individuals from one cultural

group can be applied to people from other cultural groups. However, cross-cultural research has

presented evidence for differences in perceptual and attentional processing between European

Americans (who are Westerners) and East Asians (Nisbett & Masuda, 2003; Nisbett &

Miyamoto, 2005).

Taken all together, it is important to explore the cancer pain experience in various

cultural groups such as Arab American cancer patients for many reasons. First, they may receive

inadequate medical treatment due to inability to access care or lack of knowledge and negative

attitudes of health personnel compared to patients from Western cultures. Second, they are

mainly taken care of by caregivers at home- due to lack of health insurance- and this type of care

differs from the high-tech home care seen in the West. Therefore, they must rely more on their

own abilities to cope with the pain than patients who are cared for in hospitals. Finally, they are

from a different cultural background which is believed to influence their cognitive perception of

control, and coping strategies used to deal with pain.

Quality of Life of Cancer Patients with Pain

Quality of life (QOL) research originated more than 40 years ago in the social sciences.

Documenting positive outcomes of nursing and medical interventions is a primary concern of

health care researchers and clinicians. A United States federal mandate (Kummar, et al., 2007),

expensive new medical technologies, competing demands for limited economic resources, and

funding source emphasis on documenting treatment effectiveness are driving forces in the

movement to develop outcome measures for health care. Outcomes of particular interest for

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nursing and other health sciences include symptoms, mood, functional status, general health

status, and quality of life.

Pain influences the quality of life (QOL) of the majority of people with cancer. The way

that pain is perceived and the way it is dealt with is largely influenced by the ethnocultural

background of the individuals experiencing the pain. The limited literature available supports the

suggestions that ethnic and cultural differences may be important in understanding QOL in

cancer patients (Pagano & Gotay, 2005). No studies focusing on ethnic differences in QOL for

cancer pain patients could be identified. Although research suggests that reliable data for QOL

exists, potential differences between ethnic groups have not been fully examined. These can

affect people's responses and thus estimates of reliability and validity (Gotay, 2004; Pagano &

Gotay, 2005). Assessment of QOL is primarily reflective of Western concepts of illness, and it is

not known whether these concepts are consistent in other communities (e.g., African, Asian, or

Arab). In the Western view, illness is perceived primarily as an external disturbance that prevents

an otherwise self-determined life course. However, many cultures do not share this perspective.

Fatalism, fate, and cultural predeterminism play vital roles in their belief systems and illness is

considered to be an integral part of one's life journey (Na´poles-Springer, Ortı´z, O’Brien &

Dı´az-Me´ndez, 2008). These contrasting views of illness are likely to create different

perceptions of QOL in relation to illness. Therefore, cross-cultural studies are needed to provide

a more complete picture of the multifaceted QOL construct (Pagano & Gotay, 2005).

SIGNIFICANCE FOR NURSING

Research is needed to address cancer pain and its relationships to functioning and quality

of life, because although cure may not be available, relief of suffering may be possible. Pain and

quality of life were both among the first ten priorities for nursing research recommended by the

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Oncology Nursing Society (Ropka, et al., 2002). This study served as a basis for further research

on pain in cancer patients and will add to the body of nursing knowledge. The findings expected

to help nurses recognize the importance of assessing coping as a psychological factor that plays a

role in pain management. The results provided nurses with knowledge for encouraging coping

strategies that will improve quality of life, for example maximizing behavioral coping strategies.

Based on studies in patients with chronic non-cancer pain, these types of coping (behavioral and

cognitive) were recommended as topics of health education programs (Glasgow, Hiss, Anderson,

et al. 2001; Rimmer, Riley, Wang, Rauworth, & Jurowski, 2004). However, behavioral and

cognitive coping have not been examined in Arab American cancer patients.

CONCEPTUAL FRAMEWORK

Middle-Range Theoretical Model of Adaptation to Cancer Pain

Pain is the most common symptom experienced by cancer patients, and it affects all

dimensions of their quality of life. Cancer pain can be acute—a result of medical procedures—or

chronic—secondary to metastatic disease. Consequently, unrelieved cancer pain is a critical issue

resulting in physiological, psychosocial, economic consequences and decreased over all quality

of life (Vallerand, Templin, Hasenau, & Riley-Doucet, 2007). Monitoring the effectiveness of

pain management requires the availability of appropriate pain assessments. Currently, pain

assessment in cancer lacks a coherent framework across research and clinical venues (Lai, et al.,

2005).

Pain theories to date generally have attempted to describe or explain the mechanisms of

pain and the sensory, affective, and experiential components of pain (Keefe, Rumble, Scipio,

Giordano, & Perri, 2004). Much work remains to create a precise pain theory that is appropriate

for individual assessment that would capture the multifaceted nature of pain and to produce a

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precise estimate adapted to the individual patient, provide real time results for clinical utility, and

be easy to be applied and integrated into busy oncology practices. A precise pain theory could

provide healthcare providers with a better understanding of patient-experience of pain and

facilitate an adapted pain management plan. If clinicians are to reduce pain in patients with

cancer, they need a theory of adaptation to pain, not just descriptions and explanations of

physiological processes, and perceptual phenomena. Adaptation to cancer pain theory can

provide guidance for research on cancer patient’s pain and findings that have clinical application.

Therefore, the purpose of the following section is to present the strategies that were used to

develop a middle-range theory of adaptation to cancer pain (ACP) that is developed from the

Roy Adaptation Model based on Merton’s description of theory development.

Adaptation to Cancer Pain

Cancer pain is a complex, multidimensional phenomenon that originates from sensory

stimuli and is altered by an individual’s memory, expectations, and emotions. Cancer pain may

impact various dimensions of a person’s physical, psychological, social, spiritual health and

well-being. Challenges to daily activities due to cancer pain may produce significant effects on

quality of life (QOL), leading to maladaptation. According to Roy (2005), a person is an adaptive

system, responding to internal and external stimuli (input) through behavior. The goal of nursing

is to promote adaptation for individual(s) in four adaptive modes, thus contributing to health,

quality of life, and dying with dignity (Roy, 2005; Roy & Roberts, 1981). Promoting adaptation

is done by assessing behavior and factors that influence adaptive abilities, by intervening to

expand those abilities, and to enhance environmental interactions (Roy, 2005).

Helping patients with cancer to cope with pain is a major goal of professional nursing.

Enhancing behavioral and cognitive coping may be an important strategy in providing holistic

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care for optimum health and pain management that leads to better quality of life. Development of

a middle-range nursing theory of adaptation to cancer pain (ACP) through the use of behavioral

and cognitive coping in patients with cancer may enhance clinical practice by elucidating an

understanding of how these coping strategies may promote adaptive or ineffective physiological,

psychological, social, and spiritual responses in cancer patients experiencing pain. According to

Merton (1968), a middle-range theory: (a) derives hypotheses, (b) has specified assumptions,

concepts, relational statements, and propositions, (c) is delimited in scope, (d) is empirically

based, (e) is somewhat abstract, (f) fits with many grand theories, and (g) is logical.

Strategies used to develop a middle-range nursing theory of adaptation to cancer pain based on

Merton’s description are explained in the next sections.

Strategies for Theory Development

The strategies used to develop this middle-range nursing theory of adaptation to cancer

pain based on Merton’s description of theory development. Analysis and synthesis of the

theoretical and research literature provided the foundational, theory-building strategies used to

develop the adaptation to cancer pain model. Theoretical substruction then is used to deduce

(derive) the adaptation to cancer pain model from Roy’s adaptation model. A middle-range

theory has to be empirically based and fit with many grand theories (Merton, 1968). Therefore,

the first step in theory development was to become knowledgeable of the literature on the topic

of interest (Walker & Avant, 2005). Thus, theory development began with a review and

synthesis of the theoretical knowledge and research on these topics of interest: cancer pain,

coping with pain, and behavioral and cognitive coping. From this review, two theoretical models

frequently cited as explanations of the phenomenon of interest were identified. These theoretical

models were (a) Melzak and Wall’s (1992) gate control theory of pain, and (b) Lazarus and

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Folkman’s (1984) stress and coping theory. Analysis of the theories resulted in the determination

that these models provided valuable information, but were lacking in one or more of the nursing

metaparadigm concepts (person, environment, nursing, and health) (Fawcett, 2005), and

therefore would not philosophically build nursing knowledge. Hence, the author was prompted to

review extant theories and conceptual models in the discipline of nursing.

The Roy adaptation model (RAM) (Roy & Andrews, 1999) was selected to guide the

development of the ACP theory because the assumptions, concepts, relational statements, and

propositions are logically congruent with the phenomenon of interest and the metaparadigm

concepts in nursing are well represented. Fawcett and Downs (1992), illustrated that “a

conceptual model is a set of abstract and general concepts and propositions that provides a

distinctive frame of reference or perspective for phenomena within the domain of inquiry of a

particular discipline” (p. 101). To deduce a middle-range theory from an extant theory, Fawcett

and Downs enumerated that it is appropriate to connect a nursing extant theory with a conceptual

model when the concepts, relational statements, and propositions of the new theoretical model

are logically congruent with the existing theory. Therefore, major concepts, relational statements,

and propositions from the RAM were used to guide the development of ACP theory. An

overview of the RAM is presented in the next sections.

Overview of the Roy Adaptation Model

The RAM, developed by Callista Roy, has continued to evolve (Andrews & Roy, 1991;

Roy, 1984; Roy & Andrews, 1999). Two philosophical principles form the basis of the model.

The principle of veritivity asserts the existence of absolute truth, while humanism proposes that

the subjective experiences of human beings are the most important bases for knowing and

valuing (Roy, 1988). Roy (Roy & Andrews, 1999) stated that the scientific assumptions of the

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