IRANIAN-AMERICAN OLDER ADULTS' ATTITUDES and PROACTIVE ACTIONS TOWARD PLANNING AHEAD for END-OF-LIFE CARE by Zahra Rahemi a Di

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IRANIAN-AMERICAN OLDER ADULTS’ ATTITUDES AND PROACTIVE

ACTIONS TOWARD PLANNING AHEAD FOR END-OF-LIFE CARE

Zahra Rahemi

A Dissertation Submitted to the Faculty of

The Christine E. Lynn College of Nursing

In Partial Fulfillment of the Requirements for the Degree of

Doctor of Philosophy

Florida Atlantic University

Boca Raton, FL

August 2017

ACKNOWLEDGEMENTS

I wish to acknowledge the dissertation committee chairperson, Dr. Lynne M.

Dunphy, and dissertation committee members, Dr. Patricia Liehr and Dr. Pierre

Alexandre, for their expertise, guidance, and commitment to education. I also acknowledge Dr. Christine L. Williams for her expertise and directions, as well as support and sensitivity to my needs throughout my Ph.D. study. The kindness and generosity of the Iranian Americans who participated in this study is immensely appreciated. This dissertation would not have been possible without their support during the most challenging times of this process.

iv ABSTRACT

Author: Zahra Rahemi

Title: Iranian American Older Adults’ Attitudes and Proactive Actions Toward Planning Ahead for End-of-Life Care

Institution: Florida Atlantic University

Dissertation Advisor: Dr. Lynne M. Dunphy

Degree: Doctor of Philosophy

Year: 2017

Ethnically diverse older adults are the fastest growing population in the U.S. This population may experience transitional processes associated with immigration, acculturation, aging, and end of life (EOL). Advances in technology lead to increases in care options, which can cause uncertainty to make decisions for EOL. Unmade decisions about care prior to becoming unable to communicate are associated with burdens of last- minute decisions at EOL, unwanted intensive EOL treatments for people who may die naturally of old age, financial and emotional costs, and decreased quality of life. In the

U.S., a multicultural country with a variety of care options, advance directive (AD) completion and advance care planning (ACP) may improve culturally competent and person-centered care at EOL. However, the rate of AD completion and ACP is low among Americans, especially immigrant communities. These communities, including

Iranian-American older adults, have been frequently understudied, and there is a gap in studies of EOL desires, attitudes, and actions/behaviors. This inquiry focused on planning

v ahead for EOL care across transitional processes that older immigrants may face. The aim was to enhance culturally competent care for older adults through distinguishing significant factors, which may influence planning for EOL care. Specific purposes were:

To identify relationships between attitudes toward planning for EOL care and social supports, spirituality, healthcare system distrust, and acculturation; to identify a relationship between attitudes and proactive actions toward planning ahead in Iranian-

American older adults. Conceptual frameworks for this descriptive, cross-sectional study included Culture Care Diversity and Universality and Transitions theories. Findings from

135 participants revealed that they were new immigrants to the U.S. (mean year of 23 in the U.S., 97% born in Iran) and highly educated and insured with high health statuses.

About 55% preferred non-intensive treatments and/or homecare at EOL, and 52.6% had not communicated their EOL wishes. Attitudes toward planning ahead for EOL were positively associated with acculturation and healthcare system distrust, and negatively associated with spirituality. No significant association was found between attitudes and social support. Furthermore, favorable attitudes predicted higher proactive actions to communicate wishes. Implications for practice, policy, education, and recommendations for further studies were discussed.

vi DEDICATION

This manuscript is dedicated to a mosaic of significant individuals in my journey:

My beloved parents for their love, prayers, caring, and sacrifices and for educating and preparing me for my future. My loving husband, Morteza, who has been a constant source of patience, support, and inspiration during this process. My son, Parsa, who has never known me as anything but a student, and has been a great source of love and relief from my scholarly endeavors. My sister and brothers, who have always loved me unconditionally and provided me with the best support throughout my life. My friends at

Florida Atlantic University, who inspired me to better understand the joys and challenges of crossing cultures and borders and pursuing education in a new environment. This dissertation would not have been possible without each of these individuals.

IRANIAN-AMERICAN OLDER ADULTS’ ATTITUDES AND PROACTIVE

ACTIONS TOWARD PLANNING AHEAD FOR END-OF-LIFE CARE

LIST OF TABLES ...... xii LIST OF FIGURES ...... xiii CHAPTER ONE. INTRODUCTION ...... 1 Problem Statement ...... 3 End of Life ...... 3 Advance Decisions ...... 4 Factors Related to Attitudes and Decisions Toward End-of-Life ...... 7 Theoretical Framework ...... 11 Grand Theory ...... 11 Mid-Range Theory ...... 13 Application of the Theories in the Study ...... 16 Purpose Statement ...... 17 Significance ...... 18 Significance of Research on Older Adults ...... 18 Significance of Research on Advance Decisions ...... 19 Significance of Research on Ethnically Diverse Communities ...... 21 Significance of Addressing Disparities in Ethnic Communities ...... 23 Significance of Acknowledging Iranian Americans ...... 25 Connection of the Study to Nursing and Caring Science ...... 26 Research Questions and Hypotheses ...... 27 Research Question 1 and Hypothesis 1 ...... 27 Research Question 2 and Hypothesis 2 ...... 28 Definition of Terms ...... 28 Attitude ...... 28 Proactive Actions ...... 28

viii Ethnicity, Culture, and Acculturation ...... 29 Spirituality ...... 29 Healthcare System Distrust ...... 30 Social Support...... 30 Summary ...... 30 CHAPTER TWO. LITERATURE REVIEW ...... 32 Review of Relevant Research ...... 33 Differences in Attitudes, Preferences, and Actions ...... 33 End-of-Life, Attitudes, and Actions ...... 37 Ethnicity/Culture, Attitudes, and Actions...... 42 The Importance of Research on Older Iranian Americans ...... 55 Summary of the Review of the Literature ...... 61 Gaps in Research ...... 62 Theoretical Framework ...... 62 Scope of Sample ...... 63 Instrumentation ...... 63 Summary ...... 64 CHAPTER THREE: METHODS AND PROCEDURES ...... 66 Research Design ...... 66 Ethical Considerations...... 67 Sample, Sampling Strategy, and Setting ...... 68 Sample Size ...... 69 Sampling Strategies ...... 70 Internal Validity ...... 72 Type I and II Errors ...... 73 Measurement Instruments ...... 73 Demographic-Health Questionnaire ...... 74 Attitude Toward Advance Decision Making ...... 75 Spiritual Perspective Scale ...... 76 Acculturation Scale ...... 77 Lubben Support Network Scale-6 ...... 78

ix HealthCare System Distrust Scale ...... 79 Research Questions, Variables, and Planned Measurements ...... 79 Plan for Data Collection and Consent Procedures ...... 80 Consent Procedures ...... 82 Informed Consent Document...... 83 Benefits and Risks ...... 84 Research Materials, Records, and Privacy ...... 85 Plan for Data Analysis...... 85 Analyses of Sociodemographic-Health Data ...... 85 Analyses for Research Questions ...... 86 Summary ...... 87 CHAPTER FOUR: RESULTS ...... 88 Data Preparation ...... 88 Description of Sample ...... 90 Comparing Participants Based on Survey Type ...... 97 Comparing Participants Based on Survey Language ...... 98 Preliminary Analysis of Research Instruments ...... 100 Reliability of the Measures ...... 100 Mean Scores of Measures and Assumptions of Parametric Statistics ...... 101 Analysis of Research Questions ...... 102 Summary ...... 105 CHAPTER FIVE: DISCUSSION ...... 106 Overview of the Study...... 106 Brief Overview of the Significance of This Study ...... 109 Discussion of Findings ...... 110 Overall Findings Related to the Review of the Literature ...... 110 Sociodemographic and Health Characteristics of the Sample ...... 112 Findings Related to Research Questions ...... 114 Findings Related to Theoretical Framework and Caring Science ...... 123 Limitations ...... 125 Implications for Nursing ...... 126

x Implications for Nursing Education and Practice ...... 126 Implications for Nursing Research ...... 129 Implications for Public Policy ...... 132 Conclusion ...... 136 APPENDICES ...... 138 Appendix A. IRB Approval ...... 139 Appendix B. Recruitment Flyer ...... 140 Appendix C. Inform Consent Form ...... 141 Appendix D. Inform Consent Form (Persian Version) ...... 142 Appendix E. Recruitment Flyer (Persian Version) ...... 143 Appendix F. Body of Email ...... 144 Appendix G. Body of Email (Persian Version)...... 145 Appendix H. Measurement Instruments...... 146 Appendix I. Measurement Instrument (Persian Version)...... 156 REFERENCES ...... 165

xi TABLES

Table 1. Sociodemographic and Health Information of Participants (N = 135) ...... 93

Table 2. Internal Consistency of Persian Version of the Measures Using Cronbach’s

Alpha ...... 100

Table 3. Mean and Standard Deviation of Measures’ Total Scores ...... 101

Table 4. Correlation Between Measures ...... 103

Table 5. Logistic Regression of ATADM Scale Predicting Proactive Actions to

Communicate EOL Wishes ...... 104

xii FIGURES

Figure 1. Distribution of Scores of the Attitude Scale ...... 102

Figure 2. Study as It Relates to Theoritical Framework and Caring Science ...... 124

xiii

CHAPTER ONE. INTRODUCTION

Mirza Mohammad Ali, better known as Hajj Sayyah, The Traveler, was the first known Iranian immigrant to the United States (U.S.) in 1867 (Alba & Nee, 1997). Since then, thousands of Iranians have followed him, and currently a growing number of

Iranian Americans reside here. However, due to reasons such as political conflicts between the U.S. and Iran and related discrimination and backlash against Iranian people

(ISG, 2004), Iranian Americans hesitate to identify their origin. Thus, their number is not well-identified, and reports vary from 289,465 to 2,000,000. The U.S. Census Bureau

(2011) estimated this number to be 470,341±21,201 individuals. However, according to the Public Affairs Alliance of Iranian Americans (Public Affairs Alliance of Iranian

Americans [PAAIA], 2014), this number seems to be an underestimate of the community, which may be due to a lack of Iranian Americans’ participation in the census surveys, or limitations of methods used by the Census Bureau to obtain such information. PAAIA

(2014) estimated the size of this community to be 500,000 to 1,000,000.

In general, the people in this population are underrepresented in both the U.S. census data and research (Hosseini, 2012). These persons are among the growing population of older adults with multiple chronic diseases and age-related challenges, most often exacerbated at the end-of-life (EOL) (Frilund, Eriksson, & Fagerström, 2014;

Garrido & Prigerson, 2014). Conflicts and tensions related to social and cultural transitions in a new homeland, such as facing discrimination and healthcare access

disparities, may add to the existing challenges in later life (Jeong, Ohr, Pich, Saul, & Ho,

2015; Resnick, Hickman, & Foster, 2011).

Evidence has been well-documented about healthcare disparities among ethnic groups (Johnson, 2013; Rahemi & Williams, 2016). However, Iranian Americans are largely unacknowledged in this growing body of literature, and as this population ages, issues about EOL care are critical to gaining an increased understanding of EOL choices in this understudied group. Additionally, specifically studying this population allows us to gain knowledge about some general factors that impact attitudes and proactive actions toward planning ahead for EOL care, yielding relevant knowledge regarding ethnic minorities in general. Proactive means acting before a problem occurs (Merriam-Webster,

2017). In this study, proactive actions and proactive behaviors are used interchangeably.

Based on reviews of the literature of EOL attitudes and decisions in other ethnic minority populations, four key variables have been selected as the most potentially significant fit with EOL attitudes in an older population of Iranian Americans: (a) acculturation; (b) social support; (c) spirituality; and (d) issues of trust and distrust of the healthcare system. For purposes of this study, attitude was chosen as a defining link to direct action, i.e., completing an advanced directive, because the review of literature showed an interconnectedness among attitudes, desires, and actions/behaviors. This study will describe the ways the identified factors influence EOL attitudes in this population, and illuminate the relationship between EOL attitudes and taking proactive actions toward planning ahead for EOL care. Since the U.S. is increasingly a multicultural and aging society, it is critical to emphasize the need for further research about all culturally diverse older adults. Therefore, researching older Iranian Americans’ attitudes about EOL

care, as well as their proactive planning and behaviors, adds essential new knowledge about EOL attitudes in ethnically diverse populations and EOL care in general.

Knowledge regarding Iranian Americans is extremely sparse; thus, this research will also specifically add new knowledge about this population.

Problem Statement

An increasingly growing number of older adults, including Iranian Americans, will be experiencing the transitional processes associated with aging. Perhaps the biggest transition of all is the transition from life to death. Therefore, investigating factors related to attitudes and proactive actions toward planning ahead for EOL in Iranian-American older adults is warranted. There is little knowledge about this population regarding their struggles of living in a new culture in general, and especially in facing EOL concerns.

Literature suggests that several factors can influence older adults’ EOL attitudes and behaviors.

End of Life

National Institutes of Health (NIH) Senior Health (2014) questioned existing definitions of end-of-life (EOL) as the terminal phase of serious conditions, and extended the EOL definition to all conditions in which health declines, even if death is not apparently imminent. Further, Lunney, Foley, Smith, and Gelband (2003) identified a range of conditions in which health declines, including chronic diseases, terminal illnesses, and any type of frailties due to advanced age, such as age-related co- morbidities. Cameron (1999) argued that only considering the last months, weeks, or days of life as EOL wherein individuals rush for clarifying decisions and organizing plans may lead to an “[in]complete life” (p. 27). Thus, many people die before making

proactive decisions regarding EOL care and putting things in order. According to

Cameron (2002), this issue is due to healthcare professionals’ and families’—and people in general—denial of death until the very end of life. Cameron (1999) posits that for individuals to experience a “good death,” there is a need to think about EOL earlier so that individuals can have the time to “reframe and reshape the past” in order to

“complet[e] the life and d[ie] triumphantly” with “dignity, peace, and even joy” (p. 30).

Active involvement in this process, including early conversations about EOL and documenting or communicating an advance directive (AD), lead older adults and families to potentially benefit from maintaining dignity, reducing tension and suffering, and improving well-being, as much as possible (Amella, 2003; Pizzi, 2014). Quill (1996) stated that a good death requires health professionals to perform as midwives to help dying persons experience a peaceful transitional process in a meaningful way.

Advance Decisions

Each individual is the best person to make a decision regarding his or her own life, healthcare, and death (Jeong, Higgins, & McMillan, 2011). Older adults deserve to maintain their autonomy and make proactive decisions for possibly disabling, life- threatening conditions. Those who have not identified their preferences in advance might ultimately experience aggressive and costly interventions, while losing their truly desired outcomes, such as more time with family and loved ones, and a sense of dignity

(Gawande, 2014; Nicholas, Langa, Iwashyna, & Weir, 2011). The major goals of making decisions in advance is to foster individuals’ autonomy and control over their lives as long as possible—in other words, to be proactive and experience mastery in the transitional process of life to death (Carr, 2012; Garrido, Balboni, Maciejewski, Bao, &

Prigerson, 2015). Transitions at its core is a domain of nursing-based knowledge and practice (Meleis, Sawyer, Im, Messias, & Schumacher, 2000). In acknowledgement of the importance of advance decisions, the National Institute of Nursing Research (NINR,

2011) recently set out an aggressive research agenda regarding decision-making for EOL to support all individuals, especially those from culturally diverse groups.

Advance decisions can be made and communicated in different ways, including signing a specific, written advance directive (AD). ADs are legal written or audio-taped and video-taped documents that help individuals to spell out EOL preferences or decisions for family, friends, and healthcare professionals prior to becoming unable to communicate (Campbell, Edwards, Ward, & Weatherby, 2007; Piers et al., 2013). ADs include one or more statements from the following: a legal living will (LW) to identify

EOL treatment preferences; a durable power of attorney (DPA) to authorize a legal proxy for decision making; and medical orders, such as Do Not Resuscitate order (DNR), Do

Not Intubate (DNI), and Medical Orders for Life Sustaining Treatment (MOLST) (Alano et al., 2010; Kossman, 2014). Some limitations of ADs include their lack of details, such as lack of information about medication (Goodlin, 2009); failure to capture the most recent and often rapidly changing wishes (Kossman, 2014); and persistence of AD- associated misperceptions or misunderstandings. For example, some people assume that signing an AD may lead to the loss of the ability to make future decisions and receive necessary treatments (Lloyd, White, & Sutton, 2011). Thus, people, especially those from ethnically diverse groups, often do not complete a formal AD because of these perceived losses of liberties and distrust of healthcare. These barriers and misunderstandings, complicated by language difficulties and cultural biases, often contribute to a low rate of

AD completion. More comprehensive strategies, such as advanced care planning (ACP), are called for to support meaningful transitions at EOL.

Another approach to EOL is ACP, defined as an ongoing process in which persons, families, and healthcare professionals are all involved. The goal of ACP is to collaboratively discuss EOL preferences and attitudes and how to proactively plan current and future care, potentially making preliminary decisions for the future (Detering,

Hancock, Reade, & Silvester, 2010; McMahan, Knight, Fried, & Sudore, 2013). ACP may or may not be recorded in the form of an AD. The timing, nature, and revision of

ACP varies depending upon whether the person is healthy or has chronic or life- threatening illnesses (McMahan et al., 2013; Messinger-Rapport, Baum, & Smith, 2009).

ACPs, with inclusion of ADs and other formal and informal statements, such as preference for palliative and/or hospice care, may mitigate limitations of ADs (Fagerlin

& Schneider, 2004).

Hospice and/or palliative care offers support and comfort for patients and families throughout patients’ chronic conditions (National Institute of Aging [NIA], 2012).

Hospice is a program of care with a focus on comfort, instead of seeking curative treatment, for seriously ill persons when death is imminent (NIA, 2012). Its purposes include appreciating the dying person’s desires, improving the quality of care, and reducing healthcare costs (Taylor, Ostermann, Van Houtven, Tulsky, & Steinhauseret,

2007; Stevenson & Bramson, 2009). Palliative care is a comprehensive approach by which persons are not required to give up treatments. It is available to anyone who is living with discomforts and chronic conditions, long before a need for EOL or hospice

care. Its mission is to enhance patients’ and families’ quality of life through provision of medical, social, and emotional supports (NIA, 2012; NIH Senior Health, 2014).

Factors Related to Attitudes and Decisions Toward End-of-Life

A person’s background includes cultural, biological, genetic, and sociodemographic factors as well as physical and psychological health conditions (Kumar et al., 2012; Waters, 2001). EOL attitudes and behaviors are closely related to age, gender, ethnicity, religiosity, spirituality, education, acculturation, economic resources, insurance status, and experience of chronic diseases (Johnson, 2013; Kumar et al., 2012;

Kreps, 2006; Rahemi & Williams, 2016; Rahemi, Williams, Tappen, & Engstrom, 2016).

Some conceptually important variables for EOL attitudes and behaviors in ethnically diverse older adults identified in the literature are as follows: (a) acculturation; (b) spirituality; (c) healthcare system distrust; and (d) social support (Cristancho, Peters, &

Garces, 2014; Duffy, Jackson, Schim, Ronis, & Fowler, 2006; Kossman, 2014).

In this study, two research questions have been addressed. The first research question entails four independent variables, acculturation, spirituality, healthcare system distrust, and social support, and a dependent variable, attitudes toward planning ahead for

EOL. In the second research question, attitudes are the independent variable; proactive actions are defined as the dependent variable. Proactive actions/behaviors are defined as communications of EOL wishes/preferences through verbal discussions and/or written texts, as well as a formal written advanced directive. Attitudes are defined as individuals’ specific feelings, emotions, or ways of thinking about a fact or state that are closely related to their behavior (Merriam-Webster, 2016). However, Imamoğlu and Imamoğlu

(2006) argued that attitudes may not always have a strong relationship with behaviors.

For example, individuals may have favorable attitudes toward assisted living and its importance in general, but when a situation arises, they may prefer to live in their own private homes instead of in assisted living. On the other hand, Ajzen (1991) in the theory of planned behavior indicated that attitudes are related to preferences, and preferences are closely associated with behaviors.

In general, while attitudes and preferences can be individual, they are also influenced by cultural and ethnic norms. Lloyd et al. (2011) defined culture as a set of shared values and practices that can be passed along to the next generation. Attitudes and preferences of individuals may differ within and across cultures. Diversities within a single culture can highlight the significance of acculturation (Cristancho et al., 2014).

These statements verify that cultural and ethnic norms may predict differences in attitudes and preferences within and between ethnicities.

For the purposes of this research, acculturation was deemed an essential factor to examine. It is expected that participants will exhibit varying degrees of acculturation.

Acculturation has two aspects: (a) facing and adopting a new culture, and (b) maintaining ties to the original culture. These two aspects are referred to as biculturalism, meaning individuals value the traditions and attitudes of both the host and original cultures

(Schwartz, Zamboanga, Rodriguez, & Wang, 2007; Tadmor & Tetlock, 2006).

Acculturation is recently considered as a main social determinant of health, and encapsulated a “multidirectional change in knowledge, behavior, attitude, and values of individuals or groups when two or more different cultural groups have either geographic physical or media-driven contact with each other” (Baker, 2011, pp. 89-90). Whereas biculturalism attempts to value both, it may nonetheless generate tension as a result of a

mismatch between the expectations of one or both cultures (Schwartz, Montgomery, &

Briones, 2006). This acculturative tension is amplified during periods of critical life transitions, such as EOL.

Spirituality is another factor selected for analysis in this study. Spirituality and religiosity are among the most frequently noted contextual factors that influence EOL planning (Churchill, 2015; Phelps et al., 2009). Spirituality is often a major dimension of life for persons who are chronically ill and dying (Ko, Kwak, & Nelson-Becker, 2015), and is interconnected to a sense of meaning and purpose in life, which may contribute to decreased anxiety about death, depression, and avoidance, which may lead to greater well-being at EOL (Ai & McCormick, 2010). Spirituality does not inevitably relate to religion, but is related to a specific purpose and meaning of life (Hermann, 2001).

Social support refers to different types of help that individuals may receive in times of crises and difficulties in order to cope with challenges and improve functioning and quality of life (Kavitha & Jayan, 2014; Suwankhong & Liamputtong, 2016).

Identified as an important component to evaluate in this study, social support may refer to individuals’ perception of belonging to a social network in which they are loved, cared for, and valued (Taylor, 2007). In the case of a group that experiences social stigma and discrimination, as is the case of some ethnic groups in the U.S., social support may help individuals to reduce distress and facilitate coping with these social barriers (Lauby et al.,

2012; Rhodes et al., 2015). Therefore, it can be concluded that the distress from dying far from a distant home may be mitigated by social support.

Distrust in healthcare systems can be a predictor of patients’ attitudes and may affect a person’s behaviors (Goold, 2002; Hall, Dugan, Zheng, & Mishra, 2001),

especially for ethnically diverse individuals. Trust on the part of care-receivers has been identified as a fundamental factor in establishing caring relationships, which are paramount to people’s willingness to accept or reject medical services (Hall et al., 2001).

Trust in the healthcare system will be enhanced if those receiving care believe that a healthcare professional has sufficient competence and acts in accordance with understanding and knowledge of their preferences, rather than personal or professional interests of the care provider (Goold, 2002). This trust may be a profound factor for individuals seeking services, depending on their level of stigmatization and/or acceptance that an ethnically diverse person/population may feel or perceive. This trust/distrust was thought to be an especially important factor to consider in the Iranian-American population given the varying underlying political differences between the two nations, which have gone through periods of exacerbation and easing.

While a number of significant factors for providing culturally competent care have been documented, many studies indicate disparities in healthcare practice across racial and ethnic groups. The Institute of Medicine (IOM) defined racial/ethnic health disparities as differences in quality of healthcare among racial/ethnic groups that may lead to interventions and healthcare strategies that are incongruent with clients’ access, clinical needs, and preferences (IOM, 2003). Most studies related to ethnic disparities focus on African and Hispanic Americans (Johnson, 2013); however, large and growing numbers of ethnically diverse communities, including the Iranian-American community, are understudied (Rahemi & Williams, 2016). This lack of research may contribute to a lack of knowledge about many diverse individuals new to this country. While researchers seek to identify and reduce disparities, underrepresentation of some population subgroups

in research may lead to even greater disparities in practice. This issue highlights the need for inclusion of more culturally diverse subgroups of individuals in studies (Johnson,

2013).

Americans have a limited knowledge about the Iranian-American community.

Americans often mistake Iranians as a part of the Arab community, revealing a lack of knowledge about this growing population in the U.S. Furthermore, due to the political problems between the home and the host countries, older Iranian Americans have been the subject of frequent stigmatizations and stereotypes resulting in potential vulnerability.

Vulnerability is defined as a change in quality of daily life during transition periods that may have consequences for health, including psychological damage, prolonged recovery, or delayed coping (Meleis et al., 2000). Overall, there is a wide gap in knowledge about the growing population of Iranian Americans who live in the U.S. Knowledge of different communities, individuals, and their values are central in helping caregivers take appropriate action in disconcerting situations of EOL.

Theoretical Framework

Grand Theory

The overarching theoretical framework underpinning this research is Leininger’s

(2006) Theory of Culture Care Diversity and Universality. This theory provides a framework for understanding ethnically diverse older adults’ variability in attitudes and subsequent proactive behaviors toward planning ahead for EOL care. Appreciating similarities and dissimilarities among cultures, the theory provides insight to support culturally competent care for ethnically diverse individuals, families, and communities in order to advance healthy outcomes in general, and for those at EOL. The theory has

established a substantive knowledge base to guide nurses in the discovery and use of transcultural nursing practices. Transcultural nursing is defined as an area of study and practice focused on cultural care (caring) values, beliefs, and practices of particular cultures. The goal of developing this theory was to provide culturally competent care to people and communities of different cultures (Leininger, 1978).

In order to provide culturally competent care, three modes of action are required: culture care maintenance/preservation, culture care negotiation/accommodation, and culture care restructuring/re-patterning. First, paramount to culture care maintenance/preservation is the sustenance of people’s cultural beliefs, values, and traditions, especially for culturally diverse individuals who face health challenges, including transition to death. Second, culture care accommodation/negotiation refers to alternative approaches to combine new and traditional values and beliefs to enhance healthy outcomes. This mode is pivotal to caring for individuals nearing EOL. Third, culture care re-patterning/restructuring requires healthcare professionals to design further alternative approaches sensitive to cultural values and beliefs in order to help communities and individuals.

This theory acknowledges both cultural care diversities/differences and universalities/commonalties. In addition to cultural beliefs, values, and lifeways, the theory addresses kinship and social, economic, legal and political, religious and philosophical, educational, and technological factors as pivotal indicators of culturally competent care (Leininger, 2006). Thus, the theory can guide nurses into culturally based care, meanings, and practices. Based on the Theory of Culture Care Diversity and

Universality, caring is the greatest component of nursing and refers to activities for

assisting, supporting, or enabling persons or groups with anticipated needs in order to improve their experiences during critical transitions, such as the critical transition from life to death.

Mid-Range Theory

Transitions Theory (Meleis et al., 2000) provides a mid-range theoretical perspective for understanding complex situations involving vulnerable persons—such as older adults, especially those from another culture—in their life transition processes.

Based on this theory, any significant change in individuals’ lives can trigger vulnerability, psychological uncertainty, and fear, and thus generate an increased risk of health problems (Meleis et al., 2000). Nursing phenomena are frequently intertwined with different types of transitions; therefore, Transitions Theory has been used frequently in nursing (Im, 2014).

The aim of Transitions Theory is to describe, explain, and predict processes of different types of life changes, including developmental, health and illness, situational, and organizational transitions (Im, 2014). The examples of transitions provided by Meleis et al. (2000) include health problem experiences, such as diagnosis, surgical procedures, rehabilitation and recovery; developmental and lifespan transitions, such as aging and death; as well as social and cultural transitions, such as migration and retirement.

The interrelated properties of the complex process of transition include awareness, engagement, change and difference, time span, and critical points and events.

Awareness is defined as a perception of a transition and its related factors. Without awareness, individuals cannot initiate interaction and engagement in transition processes

(Meleis et al., 2000). Second, engagement is the level of individuals’ interaction and

activities, such as seeking information and proactively preparing during transition processes. Third, all transitions involve change and difference as well as flow and movement over a time span. The time span is the fourth interrelated property of the complex process of transition (Meleis & Trangenstein, 1994). Fifth, most transition experiences involve critical turning points or events, such as increasing awareness of change. Critical points call for nurses to gain disciplinary knowledge that will help individuals in their transitional processes. Facing death and EOL are critical points in caring for chronically ill persons and older adults.

Some indicators of healthy transitions include feeling connected, interacting, being situated, and developing confidence and coping that can predict mastery and proactivity in the transition process. Developing confidence is made possible by understanding different processes of diseases and living with limitations, utilizing resources, and developing strategies for managing transitional conditions. The main goal of a healthy transition is achieving a sense of mastery and balance in the transition process.

Personal and contextual factors as well as community and/or societal conditions, which may facilitate or hinder progress toward a healthy transition, also play a key role in

Transition Theory. Personal conditions include the meanings attributed to events, cultural transitions, cultural preferences and attitudes, socioeconomic status, and anticipatory preparation and knowledge (Meleis et al., 2000). Anticipatory preparation or proactivity is a facilitator, and unpreparedness is a barrier for the transition process. Preparation or proactivity relies on knowledge about what happens during a transition process and what

may be helpful to handle it in a healthy way. Acculturation is another personal factor which can be defined as cultural transitions between home and host cultures (Im, 2014).

Community and societal conditions may also facilitate or inhibit transition processes. If the transitional process is perceived as stigmatizing, stereotypical meanings may hinder the process of mastering a successful transition. Marginalization is another societal inhibitor for a successful transition. Im (1997) identified that people who are in the margins of society may neglect their transitional issues, resulting in losing a healthy transitional process and activities.

A need to feel connected is an important factor for healthy transitions (Messias,

1997). Examples of feeling connected can be feeling connected to healthcare professionals—such as overall trust in the healthcare system or conversely distrust—and feeling connected to friends and family through social and kinship networks—social support—to help and support people in transition processes (Hondagneu-Sotel, 1994;

Messias, 1997).

Healthy outcomes of a transition process include mastery and having a new sense of identity. In the case of EOL, this may mean dying “triumphantly” (Cameron, 1999, p.

30). A healthy completion of a transition leads to a mastery of the required skills for managing new situations. In the case of EOL, this may mean proactively planning. For immigrants, identity changes related to migration are due to gaining bicultural, instead of mono-cultural, perspectives (Messias, 1997). Immigrants are invited to adjust to a technologically advanced society, where prolonging life may become suddenly an option that needs to be planned for. In this study, both immigrants and children of immigrants

are the focus population, specifically older Iranian Americans over age 50 who hold unique attitudes toward EOL that affect actions they have taken to prepare for EOL.

Application of the Theories in the Study

As a culturally diverse population, Iranian-American older adults need to receive culturally competent care at EOL. This population experiences several types of transitions, including aging; occupational changes (developmental transition); physical and psychological disorders (health and illness transition); immigration and acculturation challenges (situational transition); and changes in life, work, and a technologically advanced healthcare system (organizational transition) (Im, 2014). For example, for some women, immigration may signify a transition from being an Iranian professional person and/or upper middle class housewife—with an adequate access to quality institutional and medical services—to a lower middle class housewife without formal social activities—and thus inadequate access to quality institutional and medical services. This migratory occupational transition is a type of social transition, which may be perceived as

“downward social mobility” (Meleis et al., 2000, p. 15). However, for some people, this process may be the reverse, “an upward social and economic transition,” if they encounter better social and economic opportunities in the U.S., as compared to their home country.

Meleis et al. (2000) stated that transitions may occur with different patterns: single, multiple, sequential, simultaneous, related, and unrelated. Iranian-American older adults may experience transitions in all of these patterns. Multiplicity and complexity are inherent in transitioning to old age and a new culture due to the occurrence of multiple transitions at the same time. Experiencing multiple transitions at the same time can

increase the vulnerability in transitional processes for this population. This vulnerability may be increased or reduced by people’s levels of engagement, mastery, and proactivity related to transitional processes. The investigator used the terms proactive actions and proactive behaviors to describe a sense of mastery when people take an action. These actions refer to controlling a situation ahead of time when something happens instead of actions after something has occurred. Furthermore, investigation of these topics in

Iranian-American older adults necessitates considering Transitions Theory and other factors related to their transitions, including social support, acculturation, healthcare system distrust, and spirituality. Leininger’s (2006) theory addresses all of these factors for improving culturally competent care. Using Transitions theory to guide the more explicit aspects of this study within the broader lens of Lininger’s Culture Care grand theory, the dynamic processes of life during the extremely challenging transition of EOL will be explicated.

Purpose Statement

The purpose of this cross-sectional descriptive correlational study is to identify and describe relationships between attitudes toward planning ahead for EOL care and conceptually important variables, including social support, spirituality, healthcare system distrust, and acculturation in Iranian-American adults over age 50. Additionally, this study will identify the relationship between attitudes and proactive actions toward planning ahead for EOL care. These proactive actions/behaviors are defined as completing an advanced directive (AD), any written documentation, and/or any verbal conveyance of preferences for EOL care prior to becoming terminally ill or unable to decide and communicate. It is theorized that this most critical life transition, life to death,

challenges older adults to gain mastery through making proactive advance decisions in order to prepare for EOL. AD is not a culturally defined norm for an Iranian-American population, which is currently in a process of gaining knowledge of technological possibilities and concerns as well as healthcare options at EOL, such as specific medications and choices between palliative care and hospice care. However, it has been a norm for the Iranian-American community to think about what would happen when one died or is dying and to identify their desires in the form of written or verbal communication to family/community. Although the written communications are mostly about distribution of their properties and similar arrangements, some other issues, such as home care or institutionalization at EOL, are considered in these communications, especially in verbal communications. Therefore, for purposes of this study and to fully capture a variety of ways that older Iranian Americans communicate EOL care wishes, we chose to include verbal communications as well as written documentations of EOL wishes.

Significance

Significance of Research on Older Adults

The number of older adults aged 65 and older is increasing. The U.S. Census

Bureau (2010) identified that this number in the U.S. was 40.3 million (13% of the total population) and increased in 2013 to 44.7 million (14.1 percent of the total population)

(U.S. Census Bureau, 2013). It is estimated that this number will increase to more than 72 million (20% of the total population) by 2030 (U.S. Census Bureau, 2010), to 88 million by 2050 (Federal Interagency Forum on Aging- Related Statistics, 2012), and to 98.2 million (25% of the total population) by 2060 (U.S. Census Bureau, 2013). Ethnically

diverse older adults are one of the fastest growing populations in the U.S. Between the year 1990 and 2010, their numbers increased from 2.7 to 4.5 million (Population

Reference Bureau, 2013). Because of these dramatically growing numbers, the NIA

(2012) emphasized the importance of studies in ethnically diverse populations.

About 92% of older adults live with one chronic disease, and 77% live with at least two (National Council on Aging, 2014). By 2050, it is estimated that the prevalence of cognitive impairments, such as dementia, will increase by 3.4 times among ethnically diverse older adults (Access Economics, 2009). As a result of losing the ability to make decisions, particularly for EOL, two-thirds of older adults with cognitive impairments do not receive their desired treatments (Carr, 2011; National Council on Aging, 2014).

These issues, in addition to the costs of care, urge an investigation of factors that encourage or hinder older adults and their loved ones to think about EOL care and the reality of unpredictable conditions (Rose & Palan Lopez, 2012). This reflection can ensure adequate planning for the best care for themselves and their families and may help prevent unnecessary future burdens for themselves, their families, and society overall.

Significance of Research on Advance Decisions

As a result of technological advances in healthcare as well as increases in lifespan, almost all individuals face situations in which they need to make decisions for themselves or loved ones that relate to the manner and nature of how they may face death

(NINR, 2011). These decisions may influence EOL interventions, quality of life, and dignity at the time of death. However, many individuals and families fail to weigh EOL options and prepare to make these crucial choices prior to becoming terminally ill (NINR,

2011). Financial and emotional costs of deferred or unmade decisions and discussions

have caught policymakers’ attention. Consequently, they are urging individuals to identify their health preferences and desires prior to cognitive impairment or terminal condition (Carr, 2012; Gawande, 2014).

Some policies, including the Patient Self-Determination Act (PSDA), require healthcare professionals to help individuals become familiar with, and complete, ACP and/or ADs. Although the law has required all states and healthcare settings to support

ADs, less than 26.5% of Americans have completed an AD (Rao, Anderson, Lin, &

Laux, 2014), and most Americans die in healthcare settings (Pocock, Ives, Pring, Verne,

& Purdy, 2016). Moreover, although there is an overall better understanding among the population in general on the positive aspects of palliative care and the downside of often futile aggressive treatments, still few persons receive palliative care. A large number of older adults die with burdensome interventions, such as hospital transfers, aggressive treatments, or tube feeding, accompanied by distressing symptoms such as pain and agitation (Pocock et al., 2016). Therefore, these numbers suggest that significant barriers appear to hinder documentation of ADs or identification of wishes ahead of EOL situations. To explore these barriers, EOL and ACP are important areas for research among geriatric scholars and nurses (Campbell et al., 2007).

The Director of NIH has designated the NINR as the main institute for EOL research. According to the NINR, research needs to aim to improve patients’ and caregivers’ quality of life across care settings and cultural contexts. This institute supports research on understanding complex issues and choices underlying EOL care; reducing burdens for caregivers near EOL; promoting EOL for diverse populations; and enhancing communication among healthcare providers, patients, families, and

communities to promote making decisions and planning ahead before the complex conditions of EOL (NINR, 2012).

Significance of Research on Ethnically Diverse Communities

In light of increasing international evidence of low rates of advance care planning and use of EOL services by ethnically diverse groups (Jeong et al., 2015; Kaida, Moyser,

& Park, 2009; Venkatasalu, Seymour, & Arthur, 2014), it is essential to recognize the significance of ethnicity and culture in the context of EOL in order to modify current strategies to address inequalities. Knowledge about attitudes and proactive behaviors of ethnically diverse populations helps health providers design culturally competent care to promote informed decisions and quality of EOL care (Dillon, Roscoe, & Jenkins, 2012).

Immigration to the U.S., a society with ongoing changes in options for treatment and care related to advanced technology, from a radically different society with less technological advantages and healthcare options is overwhelming and leads to burdens on older adults, families, and healthcare providers when making decisions.

Johnson (2013) suggested that studies on older adults’ EOL decisions need to involve their socio-demographic characteristics, preferences, spiritual beliefs, illness severity, knowledge, and levels of acculturation. These studies may help reduce healthcare disparities through understanding and manipulating modifiable factors to successfully inform practice. Cultural backgrounds and living in a new culture and society with different norms and technologies influence patterns of illness experiences, care-seeking behaviors, and the use of services (Dillon et al., 2012; Thomas, Quinn,

Butler, Fryer, & Garza, 2011).

The dynamic nature of culture, as expressed through the acculturation process, leads ethnically diverse populations to demonstrate diverse cultural stances, such as collectivist and individualist, even in a single community (Cristancho et al., 2014). As opposed to individualistic approaches, which are more embedded in American ideology and are rooted in principles like autonomy, collectivist refers to an in-group approach wherein individuals tend to take actions or seek information as a member belonging to a group of people (Cristancho et al., 2014). Many ethnic groups, such as Hispanics, desire to receive health information, for example, based on a collectivist approach that refers to interdependent, face-to-face, and group activities (Schwartz et al., 2007). Also, among ethnically diverse populations, the collectivist approach in regard to seeking EOL care may predict a reluctance to plan ahead for care and have ADs, including power of attorney (Carr, 2011; Cristancho et al., 2014). This more familiar and comforting collectivist approach often declines as people adapt to American culture, which is typically more individualistic with a high premium on concepts like individual autonomy.

Changing individuals’ perspectives from collectivist to individualistic illustrates the role of acculturation as it influences ethnically diverse groups’ EOL attitudes and behaviors

(Lara, Gamboa, Kahramanian, Morales, & Hayes Bautista, 2005).

Migratory transition, along with aging transition, is paramount in the life of ethnically diverse older adults. Migratory transition is not just a movement across national borders, but also a movement between different life structures and technologies that influence an individual’s life and often EOL attitudes and preferences (Messias,

1997). Identifying factors related to a healthy transition process may help older adults move in a direction toward culturally satisfying EOL experiences and away from

vulnerability (Meleis et al., 2000). Improving EOL care and reducing ethnic disparities are among the most important missions of NINR (2011).

Significance of Addressing Disparities in Ethnic Communities

Outcomes of communication between health professionals and patients vary depending on ethnicity and race (Johnson, 2013). These outcomes are further complicated by the sensitivities of talking about EOL preferences in general. Compared to other older adults, ethnically diverse groups have lower rates of desired treatments

(Mack, Paulk, Viswanath, & Prigerson, 2010), such as higher rates of spending their last days of life in hospital settings, higher levels of receiving intensive treatments (Hanchate,

Kronman, Young-Xu, Ash, & Emanuel, 2009), lower information about EOL and palliative care, lower intentions to complete ADs (Fishman, Ten Have, & Casarett, 2012;

Jang, Chiriboga, Allen, Kwak, & Haley, 2010), and lower rates of hospice use (Lepore,

Miller, & Gozalo, 2011).

To reduce healthcare disparities, researchers have increasingly considered modifying services based on individuals’ needs and preferences (Dilworth-Anderson,

Pierre, & Hilliard, 2012) to achieve consistency with patient-centered care. Based on the principles of justice, Le Couteur, Ford, and McLachlan (2010) argued that individuals should not be treated differently due to stigmatization or stereotyping, including economic, socio-cultural, political, and civil status. Stigmatization or stereotyping occurs when people or groups with more power identify human rights based on a perception of some people’s inferiority (Levy & Sidel, 2005). Current healthcare systems research affirms the efficacy of patient-centered care as critical to quality healthcare. Patient- centered care also lends itself to the Triple Aim framework regarding patient safety,

healthcare cost-effectiveness, and patient engagement and satisfaction (Institute for

Healthcare Improvement, 2007).

However, disparities by race, income, and gender exist in the U.S. healthcare system (Dilworth-Anderson et al., 2012). For example, African Americans endure higher morbidity and mortality rates and lower quality health services (Kreps, 2006; Thomas et al., 2011). Despite the popularity of hospice care in the U.S., disparities in using hospice have led ethnically diverse people to die in hospitals and endure useless treatments, inadequate pain control, poor communication with providers, and increased costs (Dillon et al., 2012; Johnson et al., 2011; Pan et al., 2015; Taylor et al., 2007). Compared to

Whites, ethnic minorities have less comfort discussing a poor diagnosis and death, less favorable views of hospice, more distrust of healthcare professionals, greater preference for aggressive and life-sustaining treatments, and higher family-centered decisions without regard for patients’ individual preferences (Johnson et al., 2008; Ko & Berkman,

2012).

Healthcare disparities lead ethnically diverse groups to more often obtain health information and care in hospitals, compared to their usual living environments; however, even hospitalized ethnic individuals fail to be informed of EOL options until the later stages of diseases (Johnson et al., 2011). Often they arrive in healthcare systems with more advanced diseases due to fear and lack of access and health literacy. Some families believe that due to a late referral to a non-acute healthcare system, their loved ones were deprived of sufficient emotional support and quality care at EOL (Teno, Shu, Casarett, et al., 2007). Some groups prefer discussion with medical professionals rather than religious leaders and vice-versa (Duffy et al., 2006). Such preference may be associated with trust

or distrust of the healthcare system among some ethnically diverse groups and the significant place of spirituality and religiosity in their everyday lives (Bullock, McGraw,

Blank, & Bradley, 2005; Duffy et al., 2006; Johnson et al., 2008).

In the U.S., the magnitude of this issue has led healthcare disparities to be considered a priority among researchers, health professionals, and policymakers (Dillon et al., 2012). Reducing health disparities and improving quality of life are essential elements of the Healthy People 2020 initiative. Likewise, the embrace of the Triple Aim framework strongly supports Patient-centered Care (Institute for Healthcare

Improvement, 2007). The main goal of these priorities is to help vulnerable minority older adults access quality, culturally competent, and equitable care (Dilworth-Anderson et al., 2012).

Significance of Acknowledging Iranian Americans

Iranian Americans currently represent a growing segment of the American population (Homeland Security, 2016). The study of this population is significant because of the unique historical and social context within which Iranian-American older adults have experienced and faced stigmatizations and discrimination (PAAIA, 2014).

Even with Iranian Americans’ contributions to U.S. society, this community has remained the subject of violence and stereotyping. As Davaran (2005) stated, this population has been subjected to misunderstanding, misrepresentation, and mistreatment in both Western and Islamic cultures. The Western discriminatory behaviors toward this growing population are likely the result of political conflicts and distrust between countries, complicated by a lack of knowledge about Iranian culture.

The history of Iranian-American settlement in the U.S. is different from what most other immigrants have experienced; instead of escaping from economic problems, they often come to the U.S. for higher education with the ultimate intent to return to their home country (PAAIA, 2014). Despite their initial intention to return to their country, some have chosen to have Western identities, such as westernizing their names, and merge into the U.S. population (PAAIA, 2014). As a community that has overall been ignored in studies in any context, research on this community is essential to address all subgroups of American society. Ignoring Iranian Americans in EOL studies may result in their isolation and vulnerability during decision-making and therefore lead to disparities of service usage at EOL. Additionally, research on this population can add to the mosaic of understanding of EOL care for minorities.

Connection of the Study to Nursing and Caring Science

Caring and culture are intertwined and also connected with older adults’ well- being, health, and death. Nursing is a discipline and profession of transcultural caring. Its major goal is to help individuals or groups enhance or maintain their well-being as well as face EOL care and death in culturally meaningful ways (Leininger & McFarland,

2005), or as stated by Cameron (1999) to die “triumphantly” (p. 30). A caring relationship can mitigate suffering and increase health and wellness (Baillie, Ford,

Gallagher, & Wainwright, 2009). In caring for older adults and their loved ones, it is essential to reflect on the changes and demands of transitions in their daily lives and facilitate learning the skills to manage new life conditions, such as advanced technologies and associated choices, which are part of any transition (Meleis et al., 2000). Chinn

(2012) acknowledged the importance of transitional processes in caring sciences and

stated that caring and transition are two central components of nursing practice and research.

Ethnically diverse older adults are particularly vulnerable in the contexts of culture, health, and age-related care in which their rights and attitudes are often ignored

(Johnstone, 2015). To cope with these challenges, older adults need compassionate and culturally competent care through which they obtain support to make the best decisions congruent with their values (Cameron, 2002). To provide knowledgeable EOL care, several questions need to be answered: 1) What are individuals’ EOL-related attitudes? 2)

What factors influence these attitudes? and 3) What is ethnically congruent care at EOL?

Such questions are important for researchers, healthcare providers, and policymakers to address health disparities and develop culturally competent care at EOL (Dilworth-

Anderson et al., 2012). Culturally competent care lies at the heart of nursing and caring science and its aim is to successfully improve health and reduce suffering at EOL for ethnically diverse populations, including Iranian-American older adults (Leininger,

2006).

Research Questions and Hypotheses

Research Question 1 and Hypothesis 1

Research question 1 (RQ 1): How are spirituality, acculturation, healthcare system distrust, and social support related to attitudes toward planning ahead for EOL care?

Hypothesis 1 (H 1): Higher levels of acculturation to the mainstream culture and social support with lower levels of distrust of the healthcare system and spirituality are related to more favorable attitudes toward planning ahead for EOL care.

Research Question 2 and Hypothesis 2

Research question 2 (RQ 2): How are attitudes toward planning ahead for EOL care related to proactive actions to communicate EOL preferences?

Hypothesis 2 (H 2): More favorable attitudes toward planning ahead for EOL care will be associated with proactive actions to communicate EOL preferences.

Definition of Terms

This section addresses the conceptual and operational definitions of the terms and the most important variables used in this research.

Attitude

Imamoğlu and Imamoğlu (2006) identified two components, including affective and cognitive components, for attitudes. They referred to “favorability of attitudes” as positive “affective-cognitive representations” toward a subject matter (Imamoğlu &

Imamoğlu, 2006, p. 237). Ajzen (1991) described attitudes as the degree to which individuals have favorable or unfavorable appraisal of a subject matter. In this study, attitudes toward planning ahead for EOL care will be measured by scores obtained from the Attitude Toward Advance Decision Making scale (Murphy, Palmer, Azen, Frank,

Michel, & Blackhall, 1996).

Proactive Actions

Proactive actions/behaviors toward planning ahead for EOL care are intertwined with mastery, which together can predict an individual’s preparation for EOL. Proactive behaviors are related to older adults’ engagement, interactions, and activities for preparing and obtaining mastery to take action in the transition processes of acculturation, aging, and EOL (Meleis et al., 2000). These concepts are explicitly defined

as completing an advanced directive, any written documentation, and/or any verbal conveyance of preferences for EOL care prior to becoming terminally ill or unable to decide and communicate. Proactive actions/behaviors are measured by a question regarding whether participants have communicated EOL wishes/preferences through verbal discussions and/or written texts as well as a formal written advanced directive.

Ethnicity, Culture, and Acculturation

There are several definitions of ethnicity and culture. For the purpose of this study, culture is defined as the transferred, learned, and shared views, values, beliefs, practices, and norms of a group of individuals that direct thinking, decisions, and behaviors (Leininger & McFarland, 2005). Ethnicity is defined as a sense of commonality in origin and ancestry as well as shared tradition and culture (Wimmer, 2008). From an operational perspective, the idea of acculturation will capture the essence of ethnicity and culture. Acculturation is defined as a twofold and complex process of facing and adopting a new culture while maintaining the original culture’s values, thus taking into account the values, traditions, and attitudes of both cultures (Schwartz et al., 2007; Tadmor &

Tetlock, 2006). It includes learning the host culture’s artifacts, behaviors, and beliefs and values (Rudmin, 2009). Acculturation will be observed as the total score obtained from the Acculturation Scale (Jang, Kim, & Chiriboga, 2005).

Spirituality

Spirituality is a process of evolving toward wholeness and integration, and includes seeking and expressing meaning and purpose, connectedness, and transcendence

(Chiu, 2000; Puchalski et al., 2009). Spirituality also refers to an innate directive that leads to appreciation of essence, values, and meanings in individuals’ lives (Barnett &

Fortin, 2006). Walton and Sullivan (2004) defined spirituality “as a connectedness to self, others, the Divine, nature, and community” (p. 144). Operationally, spirituality will be measured as the total score obtained from the Spiritual Perspective Scale (Reed, 1987).

Healthcare System Distrust

Trust and distrust in healthcare systems are associated with reliance on healthcare professionals’ technical competence along with an obligation to value care-receivers’ interests beyond the healthcare professionals’ self-interests (Gray, 1997). Rose, Peters,

Shea, and Armstrong (2004) identified four constructs for the instrument: honesty, confidentiality, competence, and fidelity. In this study, distrust in healthcare systems will be measured using the total score obtained from the Health Care System Distrust Scale

(Rose et al., 2004).

Social Support

Social support relies on all kinds of help for assisting people when facing troubles and crises to cope with the situation while improving function and quality of life (Kavitha

& Jayan, 2014; Suwankhong & Liamputtong, 2016). In this study, social support is measured as a total score obtained by the Lubben Support Network Scale-6 (LSNS-6)

(Lubben, 1988).

Summary

In this chapter, the gaps in knowledge in the largely unexamined population of

Iranian Americans were addressed. The author has shown that there is a need for research on end-of-life (EOL) attitudes and proactive actions to document preferences in an older

Iranian-American population. The problem statement, theoretical framework grounding

the research, purpose of the study, significance of the focus of inquiry, including connection to caring science, were included.

In this chapter, an introduction to the main variables of the study—including attitudes and proactive actions toward planning ahead for EOL care, acculturation, social support, spirituality, and healthcare system distrust—were presented, and the important relationships among these variables were addressed and rooted in their conceptual frameworks. Gaps in knowledge were identified and disparities in research and practice were documented. While different research teams have addressed these variables in their studies, investigation of how these factors correlate with attitudes and behaviors toward planning ahead for EOL care in an Iranian-American older adult population is missing.

To further document existing knowledge in these areas, identify gaps, and propose the critical need for more investigation, a broader review of relevant literature was undertaken. The review of this literature follows in the next chapter.

CHAPTER TWO. LITERATURE REVIEW

This chapter presents a literature review that serves as a foundation for this investigation. A review of relevant literature, gaps in studies, and a chapter summary are presented. The purpose of this literature review is to justify the need for an investigation about a subject that has not been studied extensively. Specifically, its focus is on factors that influence end-of-life (EOL) attitudes and behaviors of ethnic groups, including acculturation, social supports, spirituality, and issues of trust and distrust in the healthcare system. These factors have been identified based on prior investigations related to EOL in different ethnic populations. Since Iranian Americans are largely unacknowledged in the growing body of literature, these factors will be further considered to provide a basis for designing the study in the Iranian-American older adult population.

In this chapter, the author investigates various pivotal questions in relevant literature: In general, what are the attitudes and actions of older adults and what are the contributing factors in health-related issues? What are the attitudes and actions of older adults regarding EOL care and what are their contributing factors? What are the EOL attitudes and actions of older adults from different ethnic groups and what are their contributing factors? In Chapter 1, the close relationship between preferences and behaviors or actions was discussed. Therefore, the studies reviewed in this chapter include preferences in conjunction with attitudes and actions in their results. In order to fill the gap in the literature, these overarching points of view guide the syntheses and

interpretations of the literature and subsequently the investigation of the subject in a different population.

A comprehensive literature search was conducted using keywords and subject headings of older adults, aged, elderly, end-of-life, decision-making, ethnic groups, minority groups, culture, acculturation, spirituality, Iranian Americans, healthcare distrust, attitudes, social support, social network, priorities, preferences, advance directives, and palliative care. In each search, a combination of subject headings and keywords were used as well as the modification of search strategies depending on the database and the controlled vocabularies available. CINAHL, Web of Science, PubMed, and PsychInfo were used to retrieve articles published in both nursing and non-nursing journals.

Review of Relevant Research

This section contains research on differences in attitudes, preferences, and actions/behaviors about healthcare decisions in general with a focus on older adults; research on attitudes and actions regarding EOL; and research on attitudes and actions regarding EOL and ethnicity/culture. In this study, attitudes were the primary focus of the investigator; however, literature on attitudes was sparse. Attitudes and preferences were often intertwined in the literature. The focus of most relevant studies presented in this chapter was on older adult populations. There was no related research regarding Iranian-

American older adults.

Differences in Attitudes, Preferences, and Actions

Regardless of ethnic background, in older ages, there is often a need to reflect on and reframe one’s values, needs, and desires. To highlight the importance of this issue, a

growing number of studies have been designed to investigate values, attitudes, preferences, and choices that older adults may have in their aging transition. The studies reviewed in this section reflect general differences in older adults’ attitudes, preferences, and actions/behaviors.

Tinetti et al. (2008) stated that multiple and competing conditions require self- prioritization of outcomes among older adults. For older adults, examples of common conditions that require trade-offs include hypertension, fall risk, and medication side effects. For example, antihypertensive medications decrease the rate of cardiovascular diseases, but increase the risk of side effects including fall injuries. The authors conducted a cross-sectional descriptive study to examine what priorities community- dwelling older adults exhibited using a discrete choice task. Using the choice task, they were asked to choose an item, which was their priority to prevent, among three common competing health conditions: hypertension, fall risk, and medication-related symptoms.

The authors recruited 123 cognitively healthy older adults aged 70 and older with hypertension and fall risk. The authors found that 62 participants (50.4%) considered the risk reduction of cardiovascular events more important than the combination of fall injuries and medication symptoms. A lower percentage of participants who had low levels of education (p = .09) and income (p = .08) and were affected by diseases, including chronic obstructive pulmonary disease (p = .02), unsteadiness (p = .02), functional dependency (p = .04), lower cognition (p = .02), and depressive symptoms (p

= .03), categorized reducing the risk of cardiovascular events as more important than reducing the risk of the combination of fall injuries and medication symptoms. These priorities were not related to prior experience of outcomes. For example, patients with a

history of MI or stroke did not identify cardiovascular diseases as a higher treatment priority than other patients. Older adults with different health statuses showed different health outcome priorities in competing conditions. In general, the variability of priorities in the face of competing outcomes reflected the significance of person-centered decision- making in healthcare settings.

In a descriptive study, Cristancho, Peters, and Garces (2014) examined relationships between the length of U.S. residence, socio-demographic factors, and preferences of rural Latino immigrants about receiving common health information. To conduct this cross-sectional study, 894 Hispanic adults were recruited in Illinois. Among first-generation Latino immigrants, workshops in Spanish at community centers were the most preferred, and home visits were the least preferred ways for achieving health information. Preference for workshops significantly decreased among second-generation

Latinos compared to the first generation (X2 [3, n = 802] = 28.51, p = 0.00). The second generation preferred receiving health information through mailed materials more than the first generation (X2 [3, n = 802] = 10.04, p = 0.01). First generation and less educated

Hispanic immigrants preferred in-person approaches, such as workshops and home visits, rather than independent strategies, such as television, magazines, and mail. Because of acculturation in American culture, Hispanic Americans increasingly adhered to independent learning strategies. Newly arrived immigrants’ views, which were typically collectivist, and subsequent changes in their perspectives while living in a new culture highlighted the importance of research about preferences of ethnic groups across different stages of acculturation in healthcare system transformation.

While previous research teams (Cristancho et al., 2014; Tinetti et al., 2008) lacked a conceptual framework to guide their studies, they showed that a variety of personal characteristics, health status, and acculturation level predicted health preferences. To assess the stability of these preferences, Martin and Roberto (2006) conducted a mixed methods study with 21 participants aged 83–101. Data were collected during two steps: baseline with face-to-face interviews and seven years later with telephone interviews. The authors gave the participants a list of important indicators of healthcare decisions and asked the participants to identify the five most preferred indicators of their decisions. The authors also provided five treatment scenarios and five life-prolonging intervention scenarios and asked the participants to make healthcare decisions across two different levels of health and three prognoses. The results showed no significant difference in preferences about life-prolonging treatments over a seven-year period. There were only two significant changes after seven years: disagreement about hip replacement surgery and refusing cataract surgery with moderate prognosis. The patients’ five identified values remained important over seven years. The two most frequent values selected by the participants at the two phases were quality of life and independence. The orders of the next common values at the baseline were dignity, religious beliefs, and burden to self or relatives, and after seven years, they were religious beliefs, dignity, and burden to self or relatives. The findings showed stability of older adults’ values over time, which is important for policymakers and healthcare professionals for providing services and care based on individuals’ preferences. Since the participants were 83-years-old and older, the authors argued that periodically revising advance directives (ADs) made by younger adults, who may consider poor health as a distant phenomenon, might be valuable to

ensure accuracy of documents over time. Since the study’s limitation was a small sample size, the authors stressed a need for further research on healthcare preferences and values, particularly in culturally and socioeconomically diverse communities.

End-of-Life, Attitudes, and Actions

The previous studies indicated differences in older adult’s general desires based on their individual and health attributes. However, study of EOL can include additional indicators that may need consideration to provide a rigorous synthesis and interpretation of literature. In this section, various factors related to older adults’ EOL attitudes and behaviors are addressed.

Lindskog, Tavelin, and Lundström (2015) highlighted the significance of research on EOL issues among older adults in their cross-sectional descriptive study. Using secondary analysis of registry data for reported adult cancer deaths, they assessed the existence and degree of age-related inequalities in EOL care during the last week of adult oncology patients’ lives in Sweden (N = 26,976). The authors found that there were age- dependent differences in EOL care quality indicators. Younger patients were more likely than older patients to be informed of an imminent death (OR = 3.9, 95% CI = 2.5–5.9, p <

0.001), to be assessed for pain (OR = 1.6, 95% CI = 1.2–2.1, p < 0.001) or other symptoms (OR = 1.4, 95% CI = 1.0–1.9, p = 0.04), to receive consultation for palliative care (OR = 4.3, 95% CI = 3.3–5.7, p < 0.001), and to receive injection for pain (OR = 3.4,

95% CI = 1.3–9.4, p = 0.016), anxiety (OR = 3.8, 95% CI = 2.0–7.1, p < 0.001), and nausea (OR = 3.6, 95% CI = 2.3–5.7, p < 0.001). The families of young patients were more informed about their loved ones’ imminent death one to two months before patients’ deaths (OR = 2.6, 95% CI = 1.5–4.3, p = 0.001) and were more likely to benefit

from bereavement support (OR = 4.6, 95% CI = 2.7–7.8, p < 0.001). Compared to the youngest patients, the oldest patients were four times more likely to die alone without presence of family members. The authors concluded that older age is a predictor of poor quality of EOL care. Generalizability of the results of this study is limited because of the constraint of recruiting patients only during the last week of life.

While evidence showed inequalities in EOL care for older adults, there is a need for investigations to improve EOL concerns in older age. Campbell et al. (2007) conducted a cross-sectional descriptive study to build a model for helping nurses promote patients’ self-determination by AD completion. A convenience sample of 118 community-dwelling older adults completed a questionnaire, including five distinct sections: (1) a demographic section; (2) the Advance Directive Attitudes Survey (ADAS) and 16 four-point Likert scale questions for examining the understanding of ADs; (3) the

Short Test of Functional Health Literacy in Adults (STOFHLA); (4) the Generalized

Self-Efficacy Scale (GSES) for identifying the relationship between personal beliefs and their subsequent behaviors as well as successful behavioral outcomes; and (5) the

Multidimensional Health Locus of Control (MHLC), Part A. For conducting logistic regression, a power analysis of 80% and an alpha level of .05 were reported. Using multinomial logistic regression, the researchers assessed the effects of 15 different factors and covariates on the rate of AD completion. According to the findings, three significant factors out of a total of 15 were identified. Receiving AD information (p = .013) and having favorable attitudes toward ADs (p=.008) enhanced the rate of AD completion.

Also, a lower level of health literacy predicted a higher rate of AD completion (β = –0.20,

OR = 0.82, p =.002). The study’s limitation was a lack of description about validation procedures for the instruments.

Using secondary analysis of data from the National Home and Hospice Care

Survey (NHHCS), Resnick et al. (2011) conducted a descriptive survey in which they presented data about completion of ADs among two groups of home health (HH, n =

4561) and hospice patients (n = 4686). They reported 29% completion rates for HH patients and 90% for hospice discharges. For HH participants, some characteristics were directly associated with the higher likelihood of having an AD, including higher age, using assistive devices, having a higher number of ADL limitations, receiving Medicaid funds, being White, and being a widow. However, being Hispanic or non-White and being enrolled in Medicaid decreased the odds of having an AD. For hospice participants, higher odds of ADs were associated with an older age, a higher number of ADL limitations, being enrolled in Medicare, the place of residence at the end of treatment (of which nursing homes equated to 36% and non-institution care was 27%), and being

White. However, depression, use of emergency services, and being non-White were associated with lower odds of AD completion. After an adjustment of confounding factors, racial differences in ADs were significant in both groups. AD completion had a negative relationship with the duration of using HH services. Among HH patients, individuals who had spouses (35%) or children (34%) as their informal caregivers had more AD completion compared to patients without caregivers (25%). Among hospice patients, those who had a child as the primary caregivers (90%) were more likely to document an AD compared to those who had parents as their primary caregivers (73%).

However, because HH addresses the transition of patients back to a community in life-

challenging conditions with a dual focus on treatment and independence, HH patients had less AD completion than hospice patients. The strengths of this study included its detailed report of methodological and statistical designs, a large sample, and a rich set of nationwide data to identify the characteristics related to AD completion. However, sophisticated inferential statistics are needed for assessing statistically significant associations between the variables and identifying predictors of having ADs.

In the studies reviewed in this section, several factors were highlighted as essential for favorable attitudes and behaviors related to EOL. These factors were mostly personal factors, including level of information, level of health literacy, age, ADL limitations, health status, and marital status. Having favorable attitudes was also a predictor of planning for EOL care. However, the literature review conducted by

Kossman (2014) added to the investigator’s knowledge about factors influencing older adults’ EOL attitudes and behaviors.

Kossman (2014) reviewed literature on the rate of AD completion, the effect of

ADs on care, and the importance of interventions for increasing AD completion among

U.S. older adults. Based on the literature, the rate of AD completion was influenced by people’s demographic characteristics and their attitudes toward EOL care. Whites had higher rates, whereas Korean Americans, African Americans, and Latinos had lower rates of AD completion. Older women were more likely to complete ADs than older men.

Other predictors of a higher AD completion included higher education, higher income, older age, being a resident of a nursing home, having discussions about EOL, involving nurse practitioners in healthcare, and incidence of several health conditions, including cognitive disorders and dementia, surgeries, declining health status, and experiencing a

death of a friend or family member. Older adults believed that spirituality was a value that had an imperative role in making decisions about later life. Older adults with ADs were less likely to experience intensive care, need fewer transitions between nursing homes and hospitals, and die less often in an acute care setting. Also, having ADs reduced patients’ and families’ emotional and physical suffering, as well as relieved families of the burdens of decision-making. Influences of AD completion on nursing home residents included longer intervals between referrals to hospitals, lower rates of burdensome transitions to hospital, lower intensive care, such as feeding tube insertion, and higher rates of death in home and community centers than institutions. Some barriers for AD completion consisted of a lack of education, including the ability to read and understand the forms; insufficient communication among professionals, patients, and families; and the complexity of forms and other requirements, such as the difficulty in identifying a surrogate.

While Kossman’s (2014) findings confirmed the results of other studies reviewed in this section, she introduced some factors that may be overarching in research regarding older adults’ EOL attitudes and behaviors, including ethnicity, culture, and spirituality.

Since gender is an important factor that may moderate or mediate the results regarding ethnic attitudes and behaviors (Duffy et al., 2006; Park, et al., 2012), she stressed the role of gender in ethnically diverse older adult planning. The role of ethnicity, culture, and spirituality in EOL attitudes and behaviors may be key points in authentic interpretation of results related to EOL studies.

Ethnicity/Culture, Attitudes, and Actions

Culture and ethnicity are among the major factors that predict or justify people’s

EOL attitudes and behaviors (Lloyd et al., 2011). In this section, relevant studies conducted on a variety of ethnic groups are reviewed to identify ethnic/culture-specific factors related to EOL desires and behaviors.

Using a systematic approach, Rahemi and Williams (2016) conducted an integrative review to examine the evidence for understanding diversity in EOL preferences among older adults of ethnically diverse communities. From a total of 920 studies published from 2005 to 2015, 21 studies met the criteria to be included in that study. Findings from studies were extracted, critically examined, grouped into key themes, and compared across studies, populations, and settings. Overall differences in

EOL preferences among ethnically diverse older adults were categorized into five themes: advance directives; hospice and palliative care; EOL communication with providers; knowledge and information about EOL; and home and family at EOL. Despite multidisciplinary attention to the topic as discussed in this integrative literature review, content and methodological limitations in the reviewed articles narrowed the understanding of what matters most to older adults of ethnically diverse communities when making decisions about their health and EOL care. The findings suggested that rigorous longitudinal studies with more ethnically diverse samples of older adults are needed to detect modifiable factors for enhancing quality of care at EOL.

Duffy et al. (2006) investigated older adults’ EOL preferences based on gender and ethnicity. A mixed methods study, including 10 focus groups with 73 participants, and a follow-up survey with 62 participants was conducted to obtain data on EOL

preferences across five racial/ethnic groups: Arab Muslims, Arab Christians, Hispanics, non-Whites, and Whites, which all were stratified by gender. A take-home questionnaire asked about demographic information and EOL issues. Arab Americans were against assisted suicide, extending life artificially, nursing homes, and telling bad news to patients. Hispanic and non-White women were against assisted suicide and preferred extending life because “God might not be ready for them yet … doctors might have made a mistake . . . anything might turn around” (Duffy et al., 2006, pp. 155-156). However, non-White men were in favor of pain medications, antibiotics, and dialysis but would refuse life-support interventions. Many non-White men reported distrust of their doctors and lawyers and considered them the “worst bandits in the world” whose careers are about “money, money, money” (Duffy et al., 2006, p. 155). Hispanic women did not want a feeding tube and preferred alternative medicine. Hispanic men were the only group that did not want dialysis and pain medications. Hispanic men also preferred assisted suicide more than other groups. Compared to others, non-Whites were the least opposed to nursing homes. When asked about EOL care discrimination, Muslim women reported cultural barriers, non-Whites reported inequities in the past, and Whites reported age discrimination and abandonment when dying. Religiosity was associated with feeling that it was important to meet with clergy (p < .001), talking about the meaning of life (p <

.10), discussing spirituality with the doctor (p < .004), being at peace with God (p <

.001), and praying (p < .001). Those who were very religious were less likely than others to prefer ending life (p < .01). Important concepts for all participants were comfort, physician communication, having responsibilities taken care of, hope and optimism, and honoring spiritual beliefs. Strengths of this study include its mixed method approach and

consideration of the participants’ gender and religion; however, this study lacks both a description about validation procedures for the questionnaire and a report of a conceptual framework and is further limited by a small sample size. Nevertheless, this article sheds light on EOL desires and behaviors in different genders and ethnic groups.

Givens, Houston, Van Voorhees, Ford, and Cooper (2007), in a cross-sectional descriptive internet survey, examined the ethnic differences in preferences and attitudes toward depression and its treatment, including counseling or medication. Using the

Center for Epidemiological Studies-Depression (CES-D) instrument, participants’ depressive symptoms were evaluated. In total, 78,753 participants with significant depressive symptoms in different ethnic groups, including 68,319 Whites, 3596 African

Americans, 2794 Asians/Pacific Islanders, 3203 Hispanic Americans, and 841 Native

Americans, completed the study. Compared to Whites, ethnic minorities, including

African Americans, Asian Americans, and Hispanic Americans, had a higher preference for counseling rather than medications (OR = 2.6, 95% CI = 2.4–2.8; OR = 2.5, 95% CI =

2.2–2.7; and OR = 1.8, 95% CI= 1.7–2.0, respectively). Whites and Native Americans preferred medications rather than counseling, while African Americans, Asian

Americans, and Hispanic Americans had more of a tendency to choosing counseling rather than medications. The authors discussed that this result might be explained with a belief that medications for depression are addictive; therefore, other approaches including prayer and counseling are more favored among minorities. The results indicated that attitudes and preferences toward caring and treatment are influenced by ethnic standards and values.

To evaluate relationships among completing an AD and quality of life in the last week of life, Garrido et al. (2015) conducted a prospective longitudinal study using data from interviews with 336 advanced oncology patients and their caregivers. Data was collected in two phases: at the baseline with patients and their providers, and at the second time with providers after patients’ death. The results showed that most patients

(76%) did not prefer heroic measures, “everything possible to remain alive” (Garrido et al., 2015, p. 829). Preference of heroic EOL measures was positively related to being younger and non-White and negatively related to having health insurance, do-not- resuscitate (DNR) order, living will (LW), or durable power of attorney (DPA). Patients with DNR orders had higher quality of life (b = .75, p < .001) compared to other participants.

A descriptive cross-sectional study was conducted by Jeong et al. (2015) in

Australia to evaluate advance planning for EOL care among culturally and linguistically diverse older adults, including Asian Pacific (n = 15), Anglo Celtic (n = 56),

Mediterranean (n = 71), and Eastern European (n = 29) subcultures. A sample of 229 older adults aged over 65 years residing in 17 daycare centers participated in the study.

The study questions addressed the levels of awareness about having an enduring guardian, ADs, and advance care planning (ACP); the preference for proxy decision- makers; and the challenges experienced by older adults with ACP. Using descriptive statistics, the findings showed that the participants were mostly Christians, including

Catholics (38.5%), Orthodox (26.9%), and other Christians (25.7%). Awareness of ACP and completion of ADs were low. About 37.5% of the Anglo Celtic group had an enduring guardian compared with 13.3% of the Asian Pacific group. For the Asian

Pacific group, children were the most preferred proxy decision-makers. The barriers of planning for EOL were related to misperceptions about available resources, including difficulty understanding the process, and related confusions and misunderstanding of the terms, concepts, and forms. To communicate older adults’ desires prior to terminal conditions, nurses need to involve both older adults and family members in discussing

EOL decisions (Jeong et al., 2015). The limitations of the study were a low response rate

(50.5%), no report of a conceptual framework, and a small number of participants in some subgroups.

In their descriptive cross-sectional study, Pan et al. (2015) addressed the underutilization of hospice services by minority ethnic groups. Using a convenience sample of

Asian American adults, including Chinese Americans (N = 99), Korean Americans (N =

349), and Hispanic Americans (N = 156), they assessed participants’ self-reported awareness and attitudes toward hospice. The participants completed questionnaires in their first language. Participants were mostly female (72%) with an average age of 53 years. The results showed that there was a significant difference between the groups’ awareness of hospice (p < 0.001). Awareness of hospice was lower in Hispanic

Americans (16%) and higher in Asian Americans, including Chinese Americans (45%) and Korean Americans (56%). In both ethnic groups, personal experiences with hospice were low. The participants mostly preferred to share knowledge of hospice with their families. However, compared to other groups, Hispanic Americans were significantly less likely to share this knowledge with their families. Among Hispanic Americans, 25% did not prefer to give hospice information to their relatives. Most of the participants preferred to receive future information about hospice. Willingness to receive future information

was significantly lower among Korean Americans. Findings showed that different ethnic groups had different desires towards EOL. Furthermore, within a single ethnic community, there were also differences in values of EOL. For instance, among Chinese

Americans from Taiwan and Hong Kong, there was more familiarity with hospice compared to participants from the People’s Republic of China. The same trend can be seen with Spanish-speaking participants from Puerto Rico who were different from participants from Ecuador in their attitudes and knowledge toward hospice. The limitations of this study included large differences among three ethnic groups’ sample sizes, lack of reports of validity and reliability of the instrument, lack of a conceptual framework, a disproportionate number of males and females, and the relatively young ages of the participants in the study of hospice.

Carr (2012) conducted a cross-sectional descriptive comparison study to examine racial and ethnic differences in ACP outcome measures, including having an LW, DPA, or EOL discussion, within and between four groups: Whites, non-Whites, Latinos, and

Asians. Data was obtained from an internet survey conducted by Knowledge Networks

(KN) in the U.S. The sample included 2,111 married and cohabiting adults ages 18 to 64.

According to the results of descriptive statistics from all participants, 24% had an LW and 27% had a DPA. When compared to Whites, Latinos (OR = 0.45, p < .001) and non-

Whites (OR = 0.55, p < .05) were less likely to talk about their preferences and to have an

LW. Latinos’ completion of an LW was related to their levels of education (p < .05).

Latinos were also less likely to have an LW (13% vs. 25%) and a DPA (17% vs. 28%) compared to Whites. Asians (32%) had more LWs compared to Hispanics (13%) and non-Whites (16%). Whites (60%) had more discussions on EOL than non-Whites (44%),

Latinos (37%), and Asians (45%). Compared to Whites, Asians were more likely to possess an LW (OR = 1.39, p < .10). The author found differences in marital, parental, and socioeconomic status between the ethnic groups. Non-Whites and Latinos had lower levels of marriage, education, income, and home ownership. When asked why the participants had not discussed their preferences, the most frequent responses included:

“haven’t thought about preferences” (38%), “health is good” (32%), and “don’t want to think about death and dying” (35%) (Carr, 2012, p. 937). A lower number of participants explained that discussion is ineffective (3%–4%) and they are unfamiliar with ACP (3%–

4%). The ACP barriers identified by each ethnic group were different. Latinos had the lowest rate of the four types of planning. Generally, the rate of informal discussions about

EOL preferences was high (57%). Asians had a higher rate of formal planning and a lower rate of informal discussions than Whites. This result can be related to Asians’ belief that discussing dying can cause an early death (Lee, 2009). Non-Whites and Asians were most likely to say that they did not want to think about dying. Compared to the other groups, Asians were more likely to state that they do not want to be a burden to their family.

In a cross-sectional descriptive comparison study, Johnson et al. (2008) argued that there were racial differences in both AD completion and attitudes toward hospice care. A stratified random sampling of African Americans and Whites was conducted. The participants included 205 cognitively healthy older adults who were African American or

White, aged over 65, and receiving primary care at the Duke University Health System.

Exclusion criteria included living in a nursing home, receiving hospice care, and enduring an active phase of cancer treatment. In this study, five instruments were used: Hospice

Beliefs and Attitudes, Preferences for Care, Spirituality, Healthcare System Distrust, and

Beliefs about Dying and Advance Care Planning. According to the results, African

Americans completed an AD significantly less than Whites (35.5% vs. 67.4%, p < .001).

African Americans also had fewer positive beliefs about hospice (p < .001), felt more discomfort about discussing death, and desired to have aggressive interventions at EOL.

African Americans’ spiritual beliefs conflicted with palliative care. They believed that planning for EOL contradicted their belief in God’s power. Using the Health Care System

Distrust Scale, it was indicated that African Americans also felt distrust toward healthcare settings. The authors concluded that ethnicity is an important factor for developing cultural beliefs, norms, and values. The study’s setting was limited to two clinics affiliated with an academic medical center. Only one-third of those contacted agreed to participate. Significantly, African Americans made up two-thirds of those who declined participation.

Kumar et al. (2012) performed a cross-sectional correlational study to assess rates of supportive and palliative care service (SPCS) use in three outpatient oncology clinics and facilitators and barriers associated with the SPCS use. Patients with breast, lung, or gastrointestinal cancer diagnoses and a Karnofsky Performance Status score of 60 or greater were included. Karnofsky Performance Status is a standard measure of the ability of cancer patients to perform daily activities with a range from zero to 100. Results from

313 participants showed that 50.5% of the participants did not use SPCS after their diagnosis. The common services used by the participants were nutrition counseling

(26.5%), psychiatric/psychological counseling (29.7%), and physical therapy (15.1%).

The use of other services, including pain/palliative care (8.5%) and cancer rehabilitation

counseling (4.1%), were not common among patients. Results of multivariable logistic regression showed that patients with a graduate education had greater SPCS use (adjusted odds ratio [AOR] = 2.14, 95%, CI = 1.08–4.26). Compared to men, women (54.2% versus

40.9%, p = 0.025) used more SPCS. Patients with lung cancer used SPCS less than patients with breast cancer (AOR = 0.48, 95% CI = 0.24–0.96). The important barriers to

SPCS utilization were a lack of knowledge (22.4%) and a lack of physician referral to

SPCS (23%). Non-Whites reported a lack of physician referral more than Whites (20.4% versus 32.9% respectively, p = 0.03). The other barriers were lack of time (9.1%), lack of transportation (6.9%), and cost (8.2%). The authors concluded that attitudes and values toward SPCS can be influenced by sociodemographic factors, including age, gender, and race/ethnicity. Limitations of the study included collecting data in a single academic cancer center and the lack of a conceptual framework.

Using a mixed methods study, True et al. (2005) investigated the differences in spiritual coping between African American and White patients (N = 68) with advanced cancer. They also assessed relationships between these differences and preferences and actions/behaviors near EOL. Data was collected from medical records and in-person interviews using the Daily Spiritual Experience Scale and questions about EOL planning and preferences. Both groups reported having moderate to favorable spiritual and religious attitudes. Compared to Whites, African Americans were more likely to believe that life was in the control of a higher power (rs = .25, p = .04), spirituality was essential for coping with cancer outcomes (rs = .37, p = .002), and relying on God’s power was their best support (rs = .36, p = .002). African Americans believed that God’s will had a higher power over their healing. A belief in divine power was adversely related to

possessing an LW (p = .007). At the EOL, African Americans had higher preferences toward life-support interventions, including hospitalization, cardiopulmonary resuscitation (CPR), and mechanical ventilation (p ≤ .001). A preference for CPR in terminal conditions was related to their beliefs in God’s power for support (rs = .34, p =

.004) and intervention (rs = .36, p = .003), and adhering to spirituality for coping with diseases (rs = .34, p = .005). In total, 24% of the participants had a signed LW, and 19% had a DPA. Compared to African Americans, Whites were more likely to have an LW

(43% vs. 8%, p = .001) and a DPA (37% vs. 5%, p = .002). The participants who had more belief in divine power and used spirituality to cope with cancer were less likely to have an LW. The quantitative results supported the qualitative theme that ethnicity and spirituality had significant effects on patients’ preferences. In response to an open-ended question related to sources of support for coping with cancer, the most common answer was religion/spirituality, and the next most common answer was spouse/family. Those who indicated that religiosity/spirituality was a significant source of support asserted that a divine power would arrange a more favorable plan for them to have a proper time of death and a better afterlife. The strength of the study was its mixed method design and its limitation was a small sample size.

In a cross-sectional descriptive study, Ko and Lee (2014) assessed the completion rate of ADs and the effects of ethnicity and demographic factors on AD completion in

California. A total of 256 cognitively competent, low-income older adults aged 60 and older who self-identified as White, Hispanic, or Black completed the study. The participants were recruited from two supportive housing facilities and a senior center in the urban area. The rate of AD completion differed among ethnic groups (x2(2) = 8.91, p

< .05). Whites (27.8%) were more likely to complete ADs compared to non-Whites

(21.4%) and Hispanics (9.8%). Two hundred and five participants had not completed

ADs. Group differences in knowledge (x2(2) = 24.75, p < .01) and attitudes (F(2, 253) =

11.38, p < .01) toward ADs were significant. Whites had more favorable attitudes and information about completing ADs. The other indicators of a higher rate of AD completion were previous ICU admission (4.3 times greater), higher knowledge of ADs

(15 times greater), and higher income (2.4 times greater). Some individuals who did not complete ADs mentioned that they did not have any relative to appoint as their proxy.

The study was limited to a small number of study settings and there was no report of a conceptual framework for the study.

In a qualitative study, Bullock et al. (2005) investigated the priorities of African

American older adults who were experiencing dying and EOL care. Focus groups and then 90-minute interviews with a purposeful sample of 22 participants with a median age of 64 were transcribed and analyzed using the constant comparative method. From this analysis, five major themes emerged: spirituality, burden on family, trust, health insurance coverage, and cultural concerns. Based on these themes, none of the participants favored hospice or palliative care compared to hospital care. The authors concluded that there is a need for improving ACP education to help culturally diverse older adults understand how ADs can improve the quality of their EOL care.

To explore racial differences in EOL planning regarding LW, DPA, and EOL discussions, Carr (2011), in a cross-sectional descriptive comparison study, assessed 293 older adults from different ethnic groups, including Hispanics, non-Hispanic Whites, and non-Hispanic non-Whites. Findings showed that non-Hispanic non-Whites and Hispanics

had less LW, DPA, and discussions about EOL treatment preferences than Whites. The gap between Whites and non-Whites in the level of ACP was explained by the non-

Whites’ belief that God controls the timing and nature of death. The gap between

Hispanics and Whites in the level of ACP was associated with Hispanics’ belief that discussions about illness and EOL may negatively affect family members. A belief in

God’s control over death’s timing was related to lower rates of having LW and DPA.

Recent death of a significant other was a predictor of having any type of planning.

Participants who had a greater acceptance of death had a higher likelihood of identifying a DPA. Those who did not want to burden others had more discussions with their loved ones. The strength of this study was its divided focus on race and ethnicity. The limitations of the study included no report of a conceptual framework and a disproportionate participation of females (which comprised two thirds of the sample) to males.

The studies in this section addressed the significance of culture-specific EOL desires, attitudes, and behaviors in older adult populations. These studies indicated that ethnic groups had different desires, attitudes, and practices related to EOL. The reported barriers for EOL attitudes and behaviors were more common in ethnically diverse older adults. These barriers included lower levels of education, less knowledge and familiarity of ACP, ADs, hospice, and palliative care, less interest in sharing or discussing EOL information, lower levels of communication with healthcare providers, and greater economic problems. Interestingly, in literature on ethnically diverse older adults, some factors were shown to be specific indicators of EOL attitudes, desires, and actions. These factors included acculturation, trust/distrust in healthcare settings, spirituality, religiosity,

and social/familial networks. They argued that spirituality, talking about the meaning of life, being at peace with God, praying, and religiosity were significant factors regarding how individuals think and plan for their EOL. They mostly declared that spirituality, religiosity, distrust in healthcare settings, cultural and familial concerns predicted lower levels of favorable attitudes and planning regarding ACP, ADs, and EOL discussions.

The findings of this literature review are confirmed by a meta-analysis of previous qualitative studies about the contributing factors of decision-making for hospice care among African Americans (Dillon et al., 2012). Dillon et al. (2012) reported that knowledge, religiosity and spirituality, trust of healthcare settings, and home and family are paramount factors for African Americans’ EOL decision-making; therefore, hospice information needs to address these factors. African Americans stressed that families need to be informed and involved in hospice care. Since this issue is important for African

Americans, some information, including those about the home-based nature of services and the emotional, psychological, and physical support provided for both patients and their families, need to be included in patient education about hospice.

Whereas these studies provided the knowledge of EOL values and actions, they have limitations that led to a significant gap in knowledge of the subject. The gaps identified in this literature review are compatible with Johnson (2013). In her study,

Johnson (2013) declared that the growing population of ethnic minority older adults experience different health conditions and need quality EOL care appropriate to their specific values and cultures. Studies related to healthcare disparities and EOL care have frequently focused on African Americans and Hispanic Americans since they are the two largest minority groups. However, other ethnic minority groups have been ignored in

these studies. Considering the plethora of cultures and health disparities in the U.S., studies on smaller ethnically diverse populations of older adults are valuable in regard to designing healthcare without disparities. This requires studies addressing older adults’ socio-demographic characteristics, desires and attitudes, spirituality, and acculturation, as well as studies on healthcare settings, such as race/ethnicity, goals, and cultural diversity of healthcare professionals (Johnson, 2013). Since all the reviewed literature in this section lacked a theoretical framework, there is a need for further studies using proper frameworks to guide the design and execution of rigorous research.

The Importance of Research on Older Iranian Americans

Due to a small number of studies on the Iranian-American community, most available information is related to approximations and conclusions from these studies.

The information in this section is mainly from data published by the Public Affairs

Alliance of Iranian Americans (PAAIA, 2014) and the Iranian Studies Group (ISG,

2004). The PAAIA is a nonprofit, nonpartisan, and nonreligious association that serves the interests of Iranian Americans, and represents the community to U.S. policymakers.

Also, the PAAIA addresses greater understanding between the people of Iran and the

United States and facilitates active participation of Iranian Americans at different levels of the U.S. government and in public debates, and provides opportunities for advancement for the next generation of Iranian Americans (PAAIA, 2016). The ISG is an independent academic organization at the Massachusetts Institute of Technology (MIT).

Iranians. Iranians have an Indo-European origin and include people of diverse ethnicities, such as Persians, Azaris, Kurds, Lors, Gilakis, Arabs, Balochs, Armenians,

Assyrians, and Turkmens. This community also has diverse religions, including Muslim,

Christian, Jewish, Zoroastrian, and Baha’i faiths. Despite their religious affiliation, most

Iranian Americans do not practice any type of religion (PAAIA, 2014).

History of older Iranian Americans’ settlement in the U.S. The history of

Iranian Americans is the history of people who immigrated to gain educational and professional advancement or freedom during two centuries. The immigration of the first

Iranian to the U.S. dates to the year 1867 (Alba & Nee, 1997). Although the process of

Iranian immigrants’ settlement and assimilation has similarities to other immigrant groups, this process is distinguished from other groups’ immigration experiences due to several factors. These factors include their distinct rationales for immigration and the conflicts between the governments of their home and host countries. There have been three significant waves of Iranian immigration to the U.S., including the waves of 1950–

1979, 1979–2001, and 2001–present.

Most Iranian-American older adults have experienced considerable status changes in the U.S. that correspond to the three waves. Before 1925, there was a small number of

Iranian immigrants living in the U.S. (Bakalian & Bozorgmehr, 2005). The first major wave of Iranian immigration to the U.S. started in 1950. In this period, a rapid economic growth in Iran led to a significant improvement of middle class Iranians’ ability to attain higher education to comply with the demands of a new stance in the country. For example, young people began to seek education abroad with governmental supports

(Bozorgmehr, 2012). In this period, some of the best American university programs planned to attract international students. Iranians were among the most desirable students for these programs due to a stable relationship between the two countries and the considerable support students received from the Iranian government. In 1975, the

Institute of International Education identified that the Iranian students (7,795 students) were the largest group of international students (9%) and they approximately doubled to

13,928 by 1976, to 25,086 by 1977, and to 51,310 by 1979 when the 1979 Iranian

Revolution occurred (Bozorgmehr, 1998). These students and their visitors became the basis for the Iranian-American population (Bozorgmehr, 1997). It is noted that most of the students and their visitors intended to permanently return to Iran after their graduation or visit. However, the events before, during, and after the Iranian Revolution of 1979, including the establishment of an Islamic government and the eight-year war between

Iran and Iraq, hindered their return. Meanwhile, the second wave of immigration (1979–

2001) had emerged.

The events around the revolution led to a mass migration of many Iranians as immigrants, exiles, or political refugees. Therefore, after the revolution, the second

Iranian immigration wave, recently known as the first brain drain from Iran, occurred.

The largest part of this wave occurred over the post-revolutionary period from 1979 to

1982 (Bozorgmehr & Douglas, 2011).

Pre- and post-revolutionary immigrants were different in their characteristics, such as their religion, political affiliation, and their reasons for immigration. Unlike their professional and university student predecessors, the post-revolutionary immigrants were mostly middle- or upper-class families, exiles, or refugees associated with the previous government officials, military personnel, and owners of large businesses. In addition, writers, journalists, artists, and musicians with high socioeconomic backgrounds also immigrated (Bozorgmehr, 2016). These Iranians, like pre-revolutionary immigrants, wanted to return home in future. However, they ultimately began to live as permanent

immigrants in the U.S. Soon afterwards, multiple crises began to affect Iranian immigrants in the U.S. The 1980 U.S./Iran hostage event by the new Iranian government caused extreme political tension between the governments of Iran and the U.S.

The initial backlash against Iranian Americans began after the 1979 Revolution, before which the U.S. and Iran had vast mutual relationships. Students and families who had studied, worked, and lived comfortably in the U.S. suddenly faced discrimination and overzealous investigations by the U.S. government. All Iranian immigrants were required to undergo extensive interviews by the local Immigration and Naturalization Services

(INS). The U.S. government revoked visas issued to many Iranians and deported a number of Iranians, including students (Hanassab & Romeria, 1998). Iranian Americans also encountered a backlash of prejudice and sometimes violence, including verbal and physical attacks on students on college campuses, boycotts of Iranian businesses, and incidents of arson. Media also negatively portrayed Iranians, and lumped all Iranians together, subjecting them to stigmatization and stereotyping. As a result, in order to conceal their heritage, many began to introduce themselves by their ancient origin,

Persian, rather than Iranian; many of them Americanized themselves by changing their last names, and so forth. Many banded together for mutual support and began avoiding the general public to decrease incidents of violence.

Nevertheless, after the outbreak of the Iran-Iraq war in 1980, another exodus of

Iranian young men eligible for military services and middle class professionals was initiated. These people became the beneficiaries of U.S. political asylum laws and were mostly granted asylum; however, some of them lived in the U.S. illegally, working odd jobs and living with relatives, endeavoring to avoid detection by INS agents.

The third wave of Iranian immigration emerged after the tragic disaster of

September 11, 2001 (9/11) which significantly impacted Iranian Americans, even though

Iranians had no association with the 9/11 attacks (PAAIA, 2014, p. 7). Many Iranians were again required to be fingerprinted and questioned by their local INS office. Through the following events, over 1000 Iranians were arrested, detained, and harshly treated and many others were deported because of visa infractions.

Nonetheless, as a result of extreme discrimination and violence against Iranians after 9/11, several Iranian-American organizations, such as The Iranian American

Political Action Committee (IAPAC), were founded to address Iranian Americans’ domestic interests, protect their rights, and protest against acts of discrimination and negative images portrayed by the media.

Iranian Americans’ Assimilation into American Culture. Assimilation is a phase of acculturation wherein individuals seek to interact with people of a new culture and place a value on adopting the new culture (Berry, 2008). There are significant diversities among Iranian Americans and other immigrant groups, and even individual Iranian

Americans in their assimilation into the general population of the U.S. It is notable that the discrimination and difficulties experienced by Iranians forced many of them to blend into the culture of the U.S. Some of them fully adopted American culture through westernizing their names and speaking only English. Others have refused to accept U.S. culture. However, most Iranian Americans have adjusted themselves between the two extremes and have combined the two cultures (PAAIA, 2014).

Challenges. Several factors have influenced Iranian Americans’ self- identification and assimilation into American culture, including consequences of the

U.S.-Iran contentious governmental relationship. Americans have known Iranians and

Iranian Americans mostly through the media that focused on political conditions and governmental relations. However, some Americans believe that Iranian Americans share many values with the general U.S. population. Nonetheless, the controversial U.S.-Iran relationship has adversely impacted Americans’ perceptions of this community (PAAIA,

2014).

Contributions of Iranian Americans to the U.S. The number of Iranian

Americans has been under-represented in census data; therefore, according to different sources, this number is not well-reported and varies from 289,465 to 2,000,000 (Hosseini,

2012; U.S. Census Bureau, 2010). The ISG estimated that 691,000 Iranian Americans reside in the U.S. This number is more than twice the number of 338,000 based on the

2000 U.S. census. Iranian Americans have made important contributions to the U.S. economy because they are among the most highly educated people with high-status positions in the U.S. Their median family income is higher (20%) than the general U.S. population. More than one in four Iranian Americans, especially women, have a master’s or doctoral degree, placing them in the highest educational rank among 67 ethnic groups

(ISG, 2004). Based on surveys of 500 companies and corporations, such as General

Electric, AT&T, and Verizon, more than 50 Iranian Americans were in the companies’ senior leadership positions. Furthermore, there are more than 500 Iranian American professors teaching and conducting research at top-ranked U.S. universities, including

MIT, Harvard, Yale, Princeton, Stanford, Georgia Tech, and the University of Wisconsin, even though Iranian Americans are among the newest immigrant groups in the U.S. (ISG,

2004). An accurate census of this population is unavailable because of their reluctance to

identify their country of origin due to the past discriminations and backlashes (ISG,

2004).

Summary of the Review of the Literature

This survey of literature is comprised of 22 queries published in peer-reviewed journals from 2005 to 2016 which were conducted in several disciplines, including sociology, social work, medicine, education, and psychology. The authors were affiliated with seven disciplines, including medicine, sociology, health sciences, gerontology, nursing, epidemiology, and psychology. The designs of the studies included mixed methods (n = 3), qualitative (n = 1), quantitative (n = 14), and integrative review (n = 4).

Cross-sectional descriptive and correlational methods were most often employed for the quantitative studies (n = 13). Only one quantitative study was a prospective longitudinal

(Garrido et al., 2015), and none of the studies was experimental. The qualitative study was descriptive (Bullock et al., 2005). Three of these studies were integrative reviews

(Johnson, 2013; Kossman, 2014; Rahemi & Williams, 2016), and one study was a meta- analysis of qualitative studies (Dillon et al., 2012).

Settings, sampling strategies, and data collection methods varied among the investigations surveyed. Most of the studies were conducted in the U.S. Other investigations were conducted in Australia and Sweden. However, a low number of international studies on this topic, which was found in this chapter, may be due to the review of studies written in English. The studies were conducted in a variety of settings: natural living environments including community settings and senior centers, nursing homes, daycare centers, and a combination of these settings. Particularly in the U.S., the pattern of ethnic groups represented in the studies was consistent, most included Whites,

African Americans, Hispanic Americans, and Asian Americans, including Chinese

Americans and Korean Americans. In one study, Arab Americans were recruited (Duffy et al., 2006). Since Iranian Americans are categorized as Whites, most studies have not clearly distinguished between race and ethnicity, especially among Whites. There was no report of research on Iranian-American older adult populations.

The participants in the reviewed studies were mostly older adults, and others were oncology patients and providers. Sample sizes of quantitative studies ranged from 105 to

78,753, qualitative studies ranged from 12 to 66, and mixed methods studies ranged from

21 to 75. Data collection strategies included use of the Internet, in-person interviews, focus groups, questionnaires, and secondary data sets. Questionnaires used in the quantitative studies included multiple-choice, ranked-type, Likert-type, and open-ended questions.

Gaps in Research

The research surveyed contributed to knowledge of health and EOL attitudes and actions both within and outside of the U.S. The gaps uncovered in this review were classified into three categories: lack of theoretical framework, limited scope of samples, and lack of inquiries using validated measures.

Theoretical Framework

Most studies did not report a theoretical framework. Those investigative teams who used a framework for their studies provided a brief and limited description and application of the framework in their works. Lack of a theoretical framework may bias the investigation and the interpretation of the findings (Paley, 1996). Therefore, to fill this gap, the present study was guided both by the culture care diversity and universality

theory (Leininger, 2006) as well as the transition theory (Meleis et al., 2000). As a grand theory, the culture care diversity and universality theory provides a framework to appreciate ethnic older adults’ cultural backgrounds, as well as their culture negotiation and re-patterning as they live in a new culture and face EOL issues. The mid-range theory of transition highlights social and contextual factors essential for ethnically diverse older adults’ attitudes and actions. These theories inform this research, from identifying the research questions to the discussion and conclusion.

Scope of Sample

A significant number of the previous studies lacked research beyond Western culture. Even in studies on ethnically diverse populations, a majority of ethnic groups have been ignored. Based on the author’s knowledge, there has been no research regarding older Iranian Americans and their values. From the studies reviewed in this chapter, most were conducted in the U.S., and acquired samples that were limited to settings and places of residence rather than expanding on a nationwide sample. In this study, unlike any of the research reviewed, a variety of older Iranian Americans residing in different U.S. states were recruited. This helped acquire a representative sample of

Iranian-American older adults. Other related limitations of the reviewed literature included disproportionate gender ratios and low response rates, both of which may have biased the interpretation of the results.

Instrumentation

Among the studies reviewed, some were lacking in reports of validity and reliability of the used instruments. However, in this study, rigorous instruments were employed to accurately quantify EOL attitudes and actions among older adults.

Summary

This chapter presented investigations that addressed older adults’ desires and attitudes toward healthcare, treatment, information, services, and EOL options, including hospice and palliative care, as well as addressing their planning for EOL and stability of values over time. The studies were conducted in a variety of settings, including natural settings, nursing homes, daycare centers, and healthcare settings. Studies in this review conveyed common findings across settings, including disparities in EOL desires, attitudes, and service utilization among ethnically diverse older adults. These disparities have been shown to contribute to older adults’ and their significant others’ dissatisfaction at EOL.

This literature review also indicated disparities among different ethnic groups regarding their attitudes and EOL care. However, the studies have addressed some larger groups in U.S. society and other smaller communities, which are still socially and economically significant, have been understudied. In general, research on Iranian

Americans is rare. To the investigator’s knowledge, there was no research identified regarding Iranian-American older adults, even though reports have indicated the significant contributions of Iranian Americans to the U.S. economy as they are among the most highly educated people with high positions in the U.S.

A variety of research designs was employed with varying rigor; some reviewed studies used measures with no established reliability and validity. Some studies focused on oncology patients and near death conditions. Literature showed that older age can be a predictor of poorer quality of EOL, which highlights a need for more interventions in older adult populations. Culture- and age-sensitive EOL investigations are required to

reduce age- and ethnicity- related inequities and increase quality of EOL for older adults and their families. The gaps identified in research justify the need for an inquiry to explore EOL attitudes and behaviors of culturally diverse communities, especially those, such as Iranian Americans, who have been omitted in previous studies.

In this chapter, the author discussed literature on the subject under three topic headings. The first topic heading addressed attitudes, preferences, and actions/behaviors of older adults in general. The next topic heading added the concept of end-of-life (EOL) to the previous topic heading, and the last topic heading introduced the concept of ethnicity/culture to previous topic headings. Comparing results of these three topic headings opened a new avenue related to understanding specific predictors of older adults’ EOL attitudes, desires, and actions that are associated with culture/ethnicity. At the beginning of this chapter, the purpose of the review was to investigate older adults’ attitudes, preferences, and actions in general. The reviewed studies at this stage have shown a specific focus on the significance of demographic and health characteristics. In the next stage, with the introduction of EOL in the previous review category, spirituality has been shown to be a major focus of the studies. Lastly, a study of culture/ethnicity uncovered more significant variables related to EOL attitudes and actions, including social and familial networks, distrust in healthcare settings, and acculturation, in addition to spirituality and religiosity. These variables may predict EOL attitudes and behaviors in

Iranian American older adults.

CHAPTER THREE: METHODS AND PROCEDURES

Chapter 3 addresses the design, ethical considerations, sample, sampling strategy, the setting of this investigation, internal validity, and risk of type I and II errors. A description of the measurement instruments employed—their psychometric properties and translation and back-translation processes—and plans for addressing the research questions and data collection are also explained. Procedures for consent, the benefits and risks, record keeping and privacy, plans for data analysis, and a chapter summary are presented as well.

Research Design

A descriptive, correlational, cross-sectional survey design was used to investigate factors related to Iranian-American older adults’ attitudes and proactive actions toward planning ahead for EOL care. The quantitative method was suitable for this study because the investigator wished to access a relatively large sample and describe factors related to individuals’ attitudes and proactive actions toward planning ahead for EOL care.

Quantitative research examines variables that can be measured, analyzed, and interpreted using numerical data as compared to qualitative methods, in which data is generally verbatim text (Creswell, 2014). This study was descriptive because the aim was to describe factors and examine relationships without trying to make causal inferences. The cross-sectional nature of this work involved analysis of the sample at one specific point in time (Creswell, 2014).

Ethical Considerations

This investigation was reviewed and approved by the Institutional Review Board

(IRB) at Florida Atlantic University, Boca Raton, Florida, following standards of confidentiality and security of research documents (See Appendix A). The investigator explained the voluntary nature of the study using flyers (Appendix B) and consent forms

(Appendix C). To avoid coercing the participants to be part of the study, the flyers were distributed by other individuals present in the gatherings. To participate in the study, potential participants contacted the investigator. Therefore, there was no insistence to participate. Participant anonymity was maintained at all times. For this purpose, the surveys did not include any identifying information. Data were collected and saved without any identifying information or clues as to the participants’ identities.

Using a consent form, the investigator ensured that participants were aware that they could withdraw from the study at any time. The risk of emotional stress in potential participants, due to some survey questions related to end-of-life, was acknowledged and respected. As a remedy for this concern, the researcher advised participants to skip any question or discontinue participation in the survey at any time. No benefit was promised to participants other than the satisfaction of knowing that the study would contribute to the knowledge about the values of the study’s population. Through the consent forms, flyers, and introductory letters, the investigator provided her contact number and email address for the participants, and offered sharing the study’s findings with them upon their request. All electronic research documents were secured via a password-protected computer. All paper documents were held in the researcher’s home in a locked room and locked safe cabinet, and will be destroyed by shredding after a maximum of five years.

All collected information will be kept for a maximum of five years or after subsequent publications.

Sample, Sampling Strategy, and Setting

The population of interest included persons aged 50 and over who resided in the

U.S. and identified themselves as Iranian Americans, either as first or second generation.

A sample of older adults who were cognitively able to provide informed consent and could independently complete a written or online survey in English or Persian were recruited through convenience and snowball sampling. Although the U.S. Census Bureau

(2013) and Federal Interagency Forum on Aging (2012) defined older adults as persons aged 65 and over, this study included participants who were 50 and older to reach an adequate number of Iranian-American older adults, which is a small population in the

U.S. This is also in agreement with other studies on ethnically diverse older adults

(Ayalon, 2013; Dupree, Watson, & Schneider, 2005; Friedman et al., 2011). Based on the investigator’s knowledge, there has not been a significant number of Iranian-American older adults who live in an institution, such as nursing homes. Therefore, institutions were not considered as the study’s setting. Participants were recruited from their natural living environments outside of facilities. Therefore, those who were living in a nursing home, receiving hospice care, or hospitalized were excluded. To ensure awareness of the participants about the inclusion and exclusion criteria, the surveys included these criteria as well as a question regarding whether the participants met the inclusion and exclusion criteria to participate. If the participants answered No to this question, their responses were excluded from the study.

Sample Size

For this study, the power analysis was used for estimating the required sample size (G-power, 3.1.9.2). The power or sensitivity of a binary hypothesis test is the probability that the test correctly rejects the null hypothesis (H0) when the alternative hypothesis (H1) is true, which is the probability of accepting the H1 when it is actually true. In other words, the power of a test is the ability of the test to detect an effect (a significant difference), if the effect actually exists (Cohen, 1992). The assumptions for the power analysis are described in this section.

A Type I error (α) occurs when a study sample yields a significant result when this result does not actually exist in the total population (Jacobsen, 2012; Munro, 2004).

It represents a false positive result. The smaller the alpha is, the larger the sample size will be. A type II error (β) occurs when a study sample yields no significant result when one exists in the total population (Jacobsen, 2012; Munro, 2004). It is referred to as a false negative result. The power of a study is estimated by β. The higher the power is, the larger the sample size should be (Munro, 2004). It is fair to use a power of at least 0.80

(Cohen, 1992).

First, to avoid over- or under-powering in the study, α was set at .05. Second, a power of at least 0.80 was set (Cohen, 1992). Last, based on a mean Odd Ratio (OR) obtained based on relevant studies (Johnson et al., 2008; Ko & Lee, 2014; Murphy et al.,

1996), the effect size was calculated at 0.1297 (Ko & Lee, 2014). Taking these assumptions into account (Cohen, 1992), the sample size was estimated to be 112.

Eighteen participants (15% of the estimated sample size) were added to this number for

handling possible missing or incomplete data. Therefore, data were collected from 130 participants.

Sampling Strategies

To successfully access a sample of 130 participants, two methods of convenience and snowball sampling were employed. Written (paper-based) and online (web-based) surveys were provided in English and Persian to the participants. The web-based surveys were distributed by a link created using the Qualtrics software. Qualtrics has the capacity to provide a web-based link for the survey, data collection, data input into Microsoft

Excel and Statistical Package for Social Sciences (SPSS), and data analysis. To reduce instrumentation threats to internal validity—related to a low response rate and incomplete surveys—the investigator offered online surveys to all participants. However, for the purposes of participants’ comfort and preferences, as well as a higher response rate, paper-based surveys were also offered through social gatherings or by mail. In this case, stamped self-addressed return envelopes were provided to the participants.

All the materials for collecting data, including consent forms (Appendix C and D), flyers (Appendix B and E), email texts/introductory letters (Appendix F and G), and surveys (Appendix H and I), were provided both in English and Persian, because English was the population’s second language. For recruiting participants, flyers in English and

Persian (see Appendix B and E) were distributed through Iranian Americans’ informal social gatherings and events, including cultural, traditional, and social events. These events were held in private homes, club houses, and public and recreational sites, such as parks. As a member of the Iranian community, the investigator has contributed to a considerable number of Iranian-American events. Flyers included (1) identification of the

research team; (2) study purpose; (3) benefits and risks of the study for the participants;

(4) inclusion and exclusion criteria; (5) time commitment required; (6) availability of web- and paper-based surveys via contact to the investigator; (7) related information about the paper-based surveys, including (a) no need to provide any identifying information, such as name and address, (b) return of completed paper-based surveys only via post to fulfill anonymity, and (c) provision of prepaid self-addressed postage envelopes by the investigator; and (8) the investigator’s (contact person’s) name, number, and email address. In the flyers, the investigator explained that the potential participants could contact the investigator for any pertinent information or any help. Additionally, the participants were encouraged to contact the investigator to request a report of the study’s final findings. Also, people who received the flyers were asked to distribute the flyers to persons who met the inclusion criteria for this study and who were living in any of the

U.S. states. The deadline for participants to return the completed surveys was identified as October 31, 2016. Since there has been strong social networking among this population, it was assumed, and then confirmed, that the investigator could access a significant number of participants through distribution of the flyers using convenience and snowball sampling methods.

Convenience sampling is a non-probability method, which provides a convenience sample by recruiting participants who are easy to reach (Tappen, 2011).

After distributing the flyers during social gatherings of Iranian Americans, a convenience sample of Iranian-American older adults were recruited. Those who agreed to participate contacted the investigator to request the paper-based survey or email containing the survey link.

Snowball sampling can be employed by collaboration of those participants who were recruited through the convenience sampling. Snowball sampling is a non- probability sampling technique in which existing participants help recruit or introduce additional participants who are among their personal contacts and acquaintances (Tappen,

2011). Using the flyers, the potential participants in the social gatherings were asked to help locate more potential participants.

Internal Validity

Internal validity relies on minimizing the effects of extraneous variables and systematic errors that may interfere with the interpretation of the results (Tappen, 2011).

There are generally eight threats to internal validity: History, instrumentation, selection bias, maturation, testing, statistical regression, mortality, and selection-maturation interaction (Campbell & Stanley, 1963). Due to the descriptive and cross-sectional nature of the study, this investigator was not concerned with the following threats: Maturation

(relates to the participants’ experience with the passage of time over the course of a study), testing (addresses the influence of pretest on posttest responses), statistical regression (refers to participants’ tendency to score closer to the mean in posttests after very high or low scores in pretests, even without intervention), mortality (refers to attrition of participants over time), and selection-maturation interaction (addresses changes in results after interventions, which are mainly related to the interactive effects of selection bias rather than the interventions themselves.)

However, history, instrumentation, and selection bias might threaten the internal validity of this study. First, history may refer to the concurrent social and political conditions at the time of conducting the study, which can impact participants’ responses.

Second, instrumentation relates to threats to psychometric properties of instruments due to improper completion of the surveys, such as incomplete responses or inaccurate interpretation of questions by participants. Last, selection bias is due to a non-random sampling. The investigator adhered to processes that helped ensure the minimization of these threats, such as using reliable and valid instruments, recruiting participants from different places and gatherings with different characteristics, and developing online surveys for ensuring full completion of questionnaires by participants. However, in the case of threats that were not resolvable, the investigator reported them as limitations of the study.

Type I and II Errors

To minimize the risks of error in this study, the investigator addressed factors that could lead to Type I and II errors. By an α level of 0.05, type I error (alpha too high) and type II error (alpha too low) were avoided. To minimize the type II error, the β level and sample size were considered large enough to detect a practical difference when one truly exists. The risk of type I error was also minimized by using established, reliable, and valid instruments and systematic sampling methods to include participants with different characteristics. The researcher attempted to avoid bias by recruiting a diverse sample based on place of residence and gender. Furthermore, before analyzing data, extreme responses and outliers were evaluated through a data cleaning process.

Measurement Instruments

The measures included a demographic-health questionnaire, the Attitude Toward

Advance Decision Making (ATADM) scale, Spiritual Perspective Scale (SPS),

Acculturation Scale (AS), Health Care System Distrust Scale (HCSDS), and Lubben

Support Network Scale-6 (LSNS-6) in both English and Persian versions (Appendix H and I). Actions/behaviors were measured using a dichotomous yes/no question regarding whether participants have had communicated EOL healthcare wishes. The measures were initially developed in English. For the purpose of this study, they were translated into

Persian. To maintain the validity and reliability of the measures, the procedure of translation to Persian and back-translation to English was performed by two bilingual bicultural persons. Face validity of the survey was obtained by an expert bilingual and bicultural, Iranian-American professor. Moreover, content validity of the yes/no question, which was used to assess communication of EOL wishes, was established in consultation with the Iranian-American expert. The maximum time commitment for completion of the survey was expected to be 20 minutes.

Demographic-Health Questionnaire

Based on the review of literature, a demographic-health information questionnaire was developed by the investigator to gather descriptive information (see Appendix H).

This questionnaire elicited information, such as age, gender, place of birth, education, marital status, insurance status, religious affiliation, residential status, years living in the

U.S., number of children, number of persons in household, place of residence, and any experience of a loved one’s death (a yes/no question). There were two additional questions about health information, including a question related to self-reported chronic health problems, and another related to self-reported health status. Additionally, at the beginning of the survey, two questions were added regarding the participants’ agreement to the terms in the informed consent notice, and awareness of the participants about the

inclusion and exclusion criteria. If the participants answered No to these questions, their responses were excluded from the study (see Appendix H).

Attitude Toward Advance Decision Making

The Attitude Toward Advance Decision Making (ATADM) scale was developed by Murphy et al. (1996) and measures participants’ beliefs about communicating EOL wishes and advance decision making (Appendix H). This scale consists of four items with a four-point Likert-type scale. A sample item is “It is the best to wait until the situation arises to make decisions about treating very serious illness, rather than writing them down in advance.” The responses and their scores include 1 = “agree strongly,” 2 =

“agree somewhat,” 3 = “disagree somewhat,” and 4 = “disagree strongly.” Murphy et al.

(1996) recoded the items as 1 = “agree” (inclusive of 1 and 2) or 0 = “disagree”

(inclusive of 3 and 4.) The scores were summed and averaged to calculate a summary attitude score ranging from 0 (more favorable attitudes) to 1 (less favorable attitudes), in which higher scores indicated less favorable attitudes toward planning ahead for EOL care. In the current study, scores were simply summed and ranged from 4 to 16, and higher scores indicated more favorable attitudes. The construct validity of the scale was verified by Murphy et al. (1996) using factor analysis. Factor analysis yielded one dominant factor, indicating that the items represent a single domain, which is attitudes about advance decision making. Ko and Lee (2014) reported Cronbach’s alpha for the modified version of the scale at .78. In this study, Cronbach’s alpha for the instrument in

English and Persian was .72 and .71, respectively.

Spiritual Perspective Scale

Spirituality was assessed by Spiritual Perspective Scale (SPS) (Appendix H) that measures the degree of spirituality that influences individuals’ lives and spiritual practices (Reed, 1986). This Likert-type 10-item scale yields a single score and does not consist of subscales; however, Reed (1986) categorized the items into two subscales based on their association with behaviors (four items) or spiritual beliefs (six items). An example for spiritual behavior includes “How often do you engage in private prayer or meditation?”, and an example for spiritual belief includes “My spirituality is a significant part of my life.” For the behavior subscale, responses include: 1 = “not at all,” 2 = “less than once a year,” 3 = “about once a year,” 4 = “about once a month,” 5 = “about once a week,” and 6 = “about once a day.” For the belief subscale, the responses include: 1 =

“strongly disagree,” 2 = “disagree,” 3 = “disagree more than agree,” 4 = “agree more than disagree,” 5 = agree,” and 6 = “strongly agree.” The total score for the behavior subscale ranges from 4 to 24, and the belief subscale ranges from 6 to 36. In the current study, the total scores considered ranged from 10 to 60. A higher score indicates a greater level of spirituality.

The psychometric properties of the SPS have been frequently assessed and verified. It was initially tested on adults of all ages with different health statuses, including healthy, hospitalized (non-terminally ill), and seriously ill groups. Cronbach’s alpha coefficients for the three groups were reported as ranging from .93 to .95. Inter- item correlations ranged from .54 to .60 across the groups. All item-scale correlations were above .60. The SPS has demonstrated criterion-related validity and discriminate validity (Reed, 1986; Reed, 1987). Dailey and Stewart (2007) reported the SPS reliability

in a population of pregnant African American women equal to .91. Humphreys (2000) also tested the construct validity of the SPS and found that a higher score on the SPS scale was correlated with participants’ older age, higher number of spiritual practices, and lower number of psychological distress syndromes. To test construct validity, Dailey and

Stewart (2007) assessed the hypothesized relationships between the SPS and self-reported religiosity and spirituality, church attendance, and self-reported health variables, such as depression (using the Center for Epidemiologic Studies Depression Scale [CES-D]), anxiety (using the Profile of Mood States’ [POMS] anxiety/tension subscale), stress (the

Perceived Stress Scale), and general health measures. Factor analysis was used to verify the general structure of the scale. In the current study, Cronbach’s alpha for the instrument in both English and Persian was .92.

Acculturation Scale

The level of acculturation was assessed with six items including self-reported

English proficiency, languages used in conversations with family, preferred languages for audiovisual media, preferred languages for written media, food consumption, and ethnicity of close friends and relatives (Appendix H). Jang et al. (2005) derived these items from Hazuda, Stern, and Haffner’s (1988) study on Hispanic populations, and modified the items to be used in research on Korean American populations, and tested psychometric properties of the scale. A sample question includes “What language do you usually use with your family?” For this question, responses include: 1 = “Only Korean,”

2 = “Mostly Korean,” 3 = “Korean and English equally,” 4 = “Mostly English,” and 5 =

“Only English.” For the current study, the investigator has modified the responses to address the Iranian-American population and Persian language. For example, the

responses to the sample question were modified to 1 = “Only Persian,” 2 = “Mostly

Persian,” 3 = “Persian and English equally,” 4 = “Mostly English,” and 5 = “Only

English.” A moderately high internal consistency (α = .86) for the scale was reported.

Factor analysis verified that the scale measures a single specific factor or construct (Jang et al., 2005). Responses are coded from 1 to 5. The total score ranges from 5 to 25.

Higher scores indicate greater levels of acculturation to the mainstream American culture.

In the current study, Cronbach’s alpha for the Acculturation scale in English and Persian was .84 and .88, respectively.

Lubben Support Network Scale-6

Social support was measured by the Lubben Support Network Scale-6 (LSNS-6)

(Lubben, 1988) (Appendix H). The LSNS-6 is a self-reported, Likert-type scale for measuring older adults’ perceived social support through contact and closeness with family and friends. Its first three items indicate family ties, and its second three items measure friendship ties. The response categories include 0 = “None,” 1 = “One,” 2 =

“Two,” 3 = “Three or four,” 4 = “Five through eight,” and 5 = “Nine or more.” A sample item is “How many relatives do you see or hear from at least once a month?’’ The LSNS-

6 total score is calculated by the sum of all items’ scores, which range from 0 to 30.

Higher scores indicate higher levels of social support. The reliability of the total scale, family ties subscale, and friendship ties subscale were .83, .84–.89, and .80–.82, respectively (Lubben, 1988; Lubben et al., 2006). Based on Ko and Lee’s (2014) study,

Cronbach’s Alpha of the LSNS-6 was reported as .79. In the current study, Cronbach’s alpha for the LSNS-6 in English and Persian was .80 and .77, respectively.

HealthCare System Distrust Scale

Distrust or trust of the healthcare system was measured by the Health Care

System Distrust Scale (HCSDS) developed by Rose et al. (2004) (Appendix H). This scale consists of 10 five-point Likert-type items. A sample item includes “Medical experiments can be done on me without my knowing about it.” Response categories are 1

= “strongly disagree,” 2 = “disagree,” 3 = “not sure,” 4 = “agree,” and 5 = “strongly agree.” Before analyzing the data, three questions were reverse-scored. Total scores range from 10 to 50. Higher scores indicate greater distrust of the healthcare system.

Using content validity, Rose et al. (2004) identified four constructs for the instrument: Honesty (items 1, 4, 5, and 10), confidentiality (items 2 and 6), competence

(items 3 and 8), and fidelity (items 7 and 9.) They also measured the internal consistency, construct validity (factor analysis), and concurrent validity of the scale. Cronbach’s alpha coefficient for the scale has been reported at .75 (Rose et al., 2004) and 0.82 (Ko & lee,

2014). Factor analysis (rotated loadings) for the total scale ranged from 0.38 to 0.73.

Concurrent validity of the scale was established by assessing the correlation between the scores of the HCSDS and the Trust Subscale from the Primary Care Assessment Survey

(r = -.34, p < .0005). In this study, Cronbach’s alpha for the instrument in English and

Persian was .60 and .73, respectively.

Research Questions, Variables, and Planned Measurements

Two questions were posed in this study. This section addresses the research questions as well as the study’s variables and measures. The RQ1 was “How are spirituality, acculturation, healthcare system distrust, and social support related to attitudes toward planning ahead for EOL care?” To answer this question, attitudes toward

planning ahead for EOL care was considered a continuous dependent variable. This variable was measured by the ATADM. The previously established SPS, AS, HCSDS, and LSNS-6 were used to measure independent variables. The scores obtained from the

SPS, AS, LSNS-6, and HCSDS were continuous.

The RQ2 was “How are attitudes toward planning ahead for EOL care related to proactive actions to communicate EOL wishes?” In this research question, the attitudes toward planning ahead for EOL care was considered a continuous independent variable, and proactive action was a categorical dependent variable. Proactive actions/behaviors were measured using a dichotomous yes/no question regarding whether participants had communicated EOL wishes in writing and/or verbally. Related to this variable is the advance directive (AD) in American culture. However, AD is not a culturally defined norm for Iranian Americans. Yet, it is a norm to think about what would happen when one died or is dying, and to identify and communicate desires to family/community in advance. Although the communications in a written form are mostly about distribution of their properties and similar arrangements, some other issues, such as home care or institutionalization at EOL, are considered in these communications, especially in verbal communications. Therefore, compared to possession of ADs, the investigator relied on any form of communication of wishes about EOL care as culturally acceptable.

Plan for Data Collection and Consent Procedures

Using only a single type of survey, web-based or paper-based, may lead to a lower response rate compared to mixed-mode, web- and paper-based, surveys. Low response rates may threaten the validity of the data analysis. Therefore, a mixed-mode survey strategy may increase the response rate and thus the validity of the study

(Greenlaw & Brown-Welty, 2009). The mixed-mode survey is particularly proper for recruiting older adults because some individuals in this population may feel more comfortable with paper-based surveys. Additionally, some older adults may have limitations that prevent them from accessing online surveys. For this study, paper- and web-based surveys in English and Persian were provided (Appendix H and I). Over the course of the recruitment, participants’ preferences for language, English or Persian, and type of survey, paper- or web-based, were considered to provide a preferred type of survey to each participant.

Additionally, multiple sampling methods, convenience and snowball sampling, were employed for increasing the validity via enhancing response rate and sample size.

Through attendance in Iranian-Americans’ events and social gatherings, the investigator planned to distribute the flyers. If individuals agreed to participate, they contacted the investigator to request the paper-based surveys or an email containing the link to the survey. The paper-based surveys were distributed during the gatherings or mailed to the participants’ mailing addresses according to their preferences. Over the course of distributing the surveys, the surveys and consent forms were provided to the participants based on their preferred language, English or Persian, and survey type, paper- or web- based. The potential participants received the study information via the flyers and/or contact with the investigator. Once potential participants contacted the investigator to participate, after reviewing the inclusion and exclusion criteria, the investigator asked about their preferences for surveys’ language and type. For those participants who preferred paper-based surveys, the flyers contained this information (The investigator also notified the participants with this information if they contacted the investigator to

participate): The participants can return the completed surveys only via post to fulfill anonymity; prepaid self-addressed postage envelopes were provided by the investigator; and the participants did not need to include any type of identifying information, such as their mailing addresses or names, in the surveys or envelopes. Therefore, there was no required identifying information and no cost to individuals to participate. Informed consents were provided in the format of a consent paragraph (see Appendix C) and were included in introductory letters or in the body of emails in paper-based and web-based surveys, respectively (see Appendix F). The consent paragraphs were emailed along with the survey links, or were mailed along with paper-based surveys to the participants.

Consent Procedures

The process began by handing out recruitment flyers to as many individuals as possible at Iranian-American cultural events. The investigator did not use personal relationships to influence potential participants, or approach individuals to convince them to participate. The flyers were distributed at regular gatherings. To avoid undue influence on potential participants to complete the study, the investigator assigned another/other individual(s) to pass out the flyers in these events. In this case, potential participants did not have any feeling of coercion in being part of the study. After the distribution of the flyers, potential participants contacted the investigator if interested in taking part in this study. Therefore, there was no coercion or persistence to participate. Potential interested participants contacted the investigator via email or phone and requested the English or

Persian version and paper or online version of the survey. Both the mailed paper and emailed reply, which contained the survey, included the introductory letter containing the consent paragraph. The consent paragraph was also included at the beginning of the

survey, and the participants were asked if they agreed with the terms in the consent notice.

According to the inclusion criteria, individuals who were cognitively able to provide informed consent and could independently complete a written or online survey in

English or Persian were recruited. Therefore, the participants had the ability to consent; no other individuals than the potential participants were permitted to provide informed consent. Participants were asked to keep a copy of the form for their records and for future contact. Toward this purpose, for those potential participants who preferred web- based surveys, the consent paragraphs were provided via the body of the email containing the survey link. The participants who chose the paper-based survey were asked to keep the page related to the consent paragraph. There was no need to return the consent form to the investigator. No paper surveys or emailed survey links were sent without an informed consent form. There was no documentation of the informed consents. However, to ensure agreement of the participants, the surveys included a question about agreement to the terms in the informed consent notice. If the participants answered No to this question, their responses were excluded from the study.

Informed Consent Document

The Paragraph Low Risk Anonymous Research consent form (Appendix C) was used because: (a) The surveys did not include any identifying information, and data were anonymous and did not directly or indirectly identify the research participants; therefore, no breach of confidentiality occurred; (b) there could be face-to-face contacts between the investigator and potential participants at social events, but there was no face-to-face meeting between the investigator and the participants during the completion of the

surveys, unless initiated by participants; (c) the investigator did not contact the participants before the participants’ initial contact for participating in the study, and thus, there was no risk of coercion to participate. The investigator assigned other individuals to pass out the flyers at the events to avoid undue coercion on potential participants to be part of the study; and (d) in a case of using a signed consent form attached to the filled surveys, anonymity of data would be threatened. Therefore, without the Paragraph Low

Risk Anonymous Research consent form, this research could not practically be carried out due to a risk to the anonymity of the data. They were asked to keep a copy of the form for their records and future contact.

Benefits and Risks

The only benefit that was promised to participants was the knowledge that they could contribute to the limited information about Iranian Americans in the U.S., an understudied population, which might ultimately inform and educate scholars, policymakers, social workers, and healthcare providers about the needs of this community. Since this study involved low risk to participants, the anticipated benefit was reasonable. The investigator provided her contact number and email address for potential participants, and offered to share the study’s findings with them at their request.

Additionally, the results of this study were presented at some of the community centers.

Via the consent form, the participants were informed of the risk of emotional stress related to a few questions about serious illnesses, death, and dying. As a remedy for this concern, they were informed that their participation was voluntary, and they could skip any question or discontinue involvement in the study at any time without

consequences of any kind. The risk of participants being identified was minimal because the data had been collected and stored anonymously.

Research Materials, Records, and Privacy

Data were entered into SPSS Version 24.0 by the investigator or directly through online surveys and by the use of Qualtrics software. Electronic data were stored in a password-protected computer. Data in paper format have been stored in the investigator’s home in a locked room and locked safe cabinet. Only the primary investigator and faculty members on the dissertation committee had access to research information. Data will be kept for a maximum of five years or after subsequent publications; then, paper data will be shredded, and electronic data will be deleted. Since the study had a quantitative research design, individual data was not the focus of the study, and results were reported using grouped aggregated data, which lends itself to confidentiality.

Plan for Data Analysis

Analyses of Sociodemographic-Health Data

Descriptive statistics were used to quantitatively summarize and describe the sample characteristics and to analyze the distribution of values (Tappen, 2011). The sociodemographic-health factors included continuous variables—such as age, years living in the U.S., number of children, number of persons in household—and categorical variables—such as gender, place of birth, education, marital status, insurance status, religious affiliation, residential status, place of residence, experience of a loved one’s death, self-reported chronic health problems, and self-reported health status. For the continuous demographic variables, mean and standard deviation were reported, and for the categorical variables, frequencies and percentages were used.

For responses to all the instruments, including the ATADM, SPS, BM, HCSDS,

LSNS-6, health-sociodemographic questionnaire, and the question about proactive actions, the normality of distribution, skewness, and measures of central tendency (mean, mode, median) and dispersion (range, variance, and standard deviation) were calculated.

Analyses for Research Questions

The plan for data analyses related to each research question (RQ) follows.

RQ1. How are spirituality, acculturation, healthcare system distrust, and social support related to attitudes toward planning ahead for EOL care? In this research question, the dependent variable is the attitude toward planning ahead for EOL care, a continuous variable measured by the ATADM scale. The independent or predictor variables were spirituality, acculturation, healthcare system distrust, and social support, which were measured by the SPS, AS, HCSDS, and LSNS-6 instruments, respectively.

These variables were continuous.

First, to answer this question, correlations between scores of dependent and independent variables were measured using the Pearson Correlation Coefficient.

RQ2. How are attitudes toward planning ahead for EOL care related to proactive actions to communicate EOL wishes? In this research question, the dependent variable was actions to communicate EOL wishes, and the independent or predictor variable of interest was attitudes toward planning ahead for EOL care. Action was considered a categorical variable and was measured by a dichotomous yes/no question. To answer this question, a logistic regression model was used.

To evaluate the fit of the regression models, the results of the Goodness-of-fit

(GOF) tests were considered to help decide whether the models were correctly specified:

For the linear regression model, the R squared measure, and for the logistic regression models, the Hosmer-Lemeshow (HL) (pseudo R squared) tests were used.

Summary

Chapter 3 presented the proposed methodology for this investigation. The method selected for this quantitative study design was explained. The design, ethical considerations, sample, sampling strategy, setting, internal validity, and risk of type I and

II errors were described. A description of the measurement scales, including their psychometric properties and translation and back-translation, and plans to collect and analyze data related to each research question were presented. Procedures for consent and information about benefits, risks, and privacy were conveyed.

CHAPTER FOUR: RESULTS

The Iranian American Older Adults’ Attitudes and Proactive Actions Toward

Planning Ahead for End-of-Life Care study showed that among the four variables of acculturation, spirituality, healthcare system distrust, and social support, acculturation was the most significant predictor of the participants’ attitudes toward planning ahead for end-of-life (EOL) care. Additionally, it was shown that attitudes toward planning ahead for EOL care are significant predictors for whether the participants had proactively taken actions to communicate their EOL wishes. This chapter is organized in terms of data preparation procedures, sociodemographic descriptions of the sample, reliability testing of the Persian version of the measures, and statistical analyses related to the research questions. The research questions include “How are spirituality, acculturation, healthcare system distrust, and social support related to attitudes toward planning ahead for EOL care?” and “How are attitudes toward planning ahead for EOL care related to proactive actions to communicate EOL wishes?”

Data Preparation

Analysis of the data was completed using the IBM Statistical Package for Social

Sciences Version 24.0 (SPSS 24). Data were collected using written (paper-based) or online (web-based) surveys and were provided in English and Persian for the participants.

Initially, the online data was downloaded from the Qualtrics software into Microsoft

Excel. Then, the paper-based data were manually added to the Excel spreadsheet and merged with the online data. As an additional measure of accuracy, data cleaning via

manual detection and correction was implemented. Data cleaning began by deleting columns automatically generated by the Qualtrics software, such as the Internet provider address. By data cleaning, the errors, such as inaccurate data and missing data that may affect the outcomes of analysis are reduced (Tappen, 2011). Data then were imported into the SPSS 24. Prior to beginning any statistical analysis, the numbers obtained and recorded during the data collection phase were visually inspected, and columns containing item totals were reviewed for unusual results that would indicate the presence of outliers. In addition to examining outliers and numbers outside of the expected range, the response to the question about agreement to the terms in the informed consent notice were inspected. For example, one participant survey was eliminated as it indicated an age less than 50 years, and another participant survey was excluded because it indicated a

“No” response to the informed consent notice. The researcher considered an “Other” option for identifying sociodemographic and health information. This option facilitated clarity in the reporting of related data regarding place of birth, religion, place of residency, and preference for EOL care by the participants. Space was provided for the participants to specify their responses in the case of choosing the “Other” option. These responses were used for describing the “Other” in analyzing and reporting the data.

The total number of persons who accessed the electronic survey online was 138, from which 19 were deleted because although they answered the questions about consent notice and eligibility to participate, they did not respond to any of the survey questions.

Ten were excluded because they only answered some of the sociodemographic questions.

A total of 26 participants who completed the paper version of the survey was added to the online participants, resulting in a final sample size of 135. Missing data may be due to

participant refusal, participant fatigue, or poor directions (Tappen, 2011). In 135 participant responses, there was no missing data, which may be partially explained by the fact that the online surveys were set to “Force Response,” which required participants to complete previous questions before proceeding to the next question. Sociodemographic and health data were analyzed using descriptive statistics. To test relationships between attitudes toward planning ahead for EOL and acculturation, spirituality, social support, and healthcare system distrust, the Pearson Correlation Coefficient was used. To determine the relationship between attitudes toward planning ahead for EOL and proactive behaviors to communicate EOL wishes, logistic regression was used. The significant alpha level was set at 0.05.

Description of Sample

The sample included persons aged 50 and over who resided in the U.S. and identified themselves as Iranian Americans, either as first or second generation. The sample was recruited based on convenience and snowball sampling methods through distributing the flyers during multiple Iranian-American events and gatherings. All potential participants were provided with the investigators’ contact information as well as the link to the survey in English and Persian. The link to online surveys or paper surveys were sent to the participants through email or mail, respectively, based on their preference. In order to increase the number of participants, an additional sampling strategy, snowball sampling, was employed. Using flyers, potential participants were asked to send the link or investigators’ information to friends and acquaintances so that they could participate in the survey if they felt so inclined. The following paragraphs delineate the analysis for each of the sociodemographic variables.

The sociodemographic-health data included the continuous variables of age, years living in the U.S., number of children, and number of persons in household, and the categorical variables of gender, place of birth, education, marital status, insurance status, religious affiliation, residential status, place of residence, experience of a loved one’s death, self-reported chronic health problems, self-reported health status, and preferences for EOL care. The sociodemographic-health data were analyzed using means and standard deviations for the continuous variables and frequencies and percentages for the categorical variables (see Table 1). A total of 64 (47.4%) participants completed the

English version and 71 (52.6%) completed the Persian version of the survey. Moreover,

109 (80.7%) participants completed the online survey and 26 (19.3%) completed the paper survey.

Age

Participants were asked to write their age in years as a whole number. Ages of the participants ranged from 50 to 86 years old (M = 60.96, SD = 8.72).

Gender

The sex of the participants was self-reported with two choices, male and female.

The sample consisted of 57 (42.2%) males and 78 (57.8%) females.

Place of Birth

Data about place of birth were elicited by choosing one of the two options, Iran or

U.S. A majority of the participants, 131 (97.0%), were born in Iran and only 4 (3.0%) were born in the U.S.

Education Level

Data for education level were elicited by choosing one option from a list of options. Eight (5.9%) participants had less than a High-School diploma; 22 (16.3%) a

High-School diploma; 63 (46.7%) some college or a bachelor degree; and 42 (31.1%) a graduate degree.

Marital Status

Data for marital status were elicited by participants choosing one category from a list of options. The marital status of the participants consisted of 102 (75.6%) married, 3

(2.2%) single and never married, 18 (13.3%) divorced/separated, and 12 (8.9%) widowed.

Number of Children

Participants were asked to write the number of children as a whole number. Total number of children ranged from 0 to 6 (M = 2.24, SD = 1.30).

Religion

Participants were able to indicate their religion by choosing one option from a list that included six categories. An “Other” option was available wherein participants could indicate a religion not listed. The sample consisted of 112 (86.1%) Muslim, 6 (4.6%)

Jewish, 3 (2.3%) Christian, and 4 (3.1%) Baha’i. None of the participants chose the

Zoroastrian category. The total number of participants who chose “Other” was 5 (3.9%); these data were placed into the six categories. The participants who chose “Other” specified their responses as “None,” “Only Spiritual,” or “Agnostic.”

Residential Status

The residential status of the participants was self-reported with two choices, U.S. citizen or permanent resident. A total of 107 (79.3%) participants were citizens and 28

(20.7%) permanent residents.

Place of Residency

From four options for choosing a place of residency in the U.S., 121 (89.6%) participants chose “Private Home,” 11 (8.2%) participants “Children’s Home,” and 3

(2.2%) participants “Other Relatives’ Home.” None of the participants chose “Other.”

State of Residence

Data about state of residence were elicited by choosing a state from a drop-down list. A majority of the participants, 99 (73.3%), resided in Florida. Other participants’ states of residence were: Alabama 1 (0.7%), Arizona 2 (1.5%), California 12 (8.9%),

Connecticut 1 (0.7%), Georgia 3 (2.2%), Illinois 1 (0.7%), Kansas 2 (1.5%), Maryland 3

(2.2%), Massachusetts 1 (0.7%), New York 1 (0.7%), Ohio 1 (0.7%), Tennessee 1

(0.7%), Texas 1 (0.7%), Virginia 5 (3.7%), and Washington state 1 (0.7%).

Table 1

Sociodemographic and Health Information of Participants (N = 135) Sociodemographic and Health Variables M SD f % Survey Language

English 64 47.4

Persian 71 52.6 Survey Type Online 109 80.7 Paper 26 19.3 Age 60.96 8.72 Gender Male 57 42.2 Female 78 57.8

Table 1

Sociodemographic and Health Information of Participants (N = 135) Sociodemographic and Health Variables M SD f % Place of Birth Iran 131 97.0 U.S. 4 3.0 Education Level Less than High-School Diploma 8 5.9

A High-School Diploma 22 16.3

Some College or a Bachelor Degree 63 46.7 A Graduate Degree 42 31.1 Marital Status Married 102 75.6 Never Married 3 2.2 Divorced/Separated 18 13.3 Widowed 12 8.9 Number of Children 2.24 1.30 Religion Muslim 112 86.1 Jewish 6 4.6 Christian 3 2.3 Zoroastrian 0 0.0 Baha’i 4 3.1 Other (None, Spiritual, or Agnostic) 5 3.9 State of Residence Alabama 1 0.7 Arizona 2 1.5 California 12 8.9 Connecticut 1 0.7 Florida 99 73.3 Georgia 3 2.2 Illinois 1 0.7 Kansas 2 1.5

Maryland 3 2.2 Massachusetts 1 0.7 New York 1 0.7 Ohio 1 0.7 Tennessee 1 0.7 Texas 1 0.7 Virginia 5 3.7 Washington 1 0.7

Table 1

Sociodemographic and Health Information of Participants (N = 135) Sociodemographic and Health Variables M SD f % Residential Status Citizen 107 79.3 Permanent Resident 28 20.7 Place of Residency Private Home 121 89.6

Children’s Home 11 8.2 Other Relatives’ Home 3 2.2 Years Living in the U.S. 23.19 14.65 Number of Persons Living with 2.08 1.41 Insurance Yes 113 83.7 No 22 16.3 Experience of a Loved One’s Death Yes 102 75.6 No 33 24.4 Chronic Disease Yes 50 37 No 85 63.0 Overall Health Status Excellent 28 20.7 Good 84 62.2 Fair 19 14.1 Poor 4 3.0 Preference for EOL Care Hospitalization and Intensive Interventions* 52 38.52 Comfort, Palliative, and/or Home Care 61 45.18 No Intensive Intervention (in Hospital and/or Home) 13 9.63 Not Sure 9 6.67 Communication of EOL Healthcare Wishes Yes 64 47.4 No 71 52.6 Note. M = mean, SD = standard deviation, * = intensive interventions may include one or a combination of surgery, cardiopulmonary resuscitation (CPR), mechanical ventilation, artificial nutrition (such as feeding tube).

Years Living in the U.S.

Participants were asked to indicate the number of years they were living in the

U.S. as a whole number. Years living in the U.S. ranged from 1 to 75 years (M = 23.19,

SD = 14.65).

Number of Persons Living with

Participants were asked to indicate the number of persons they were currently living with. This number ranged from 0 to 6 (M = 2.08, SD = 1.41).

Insurance

A total of 113 (83.7%) participants chose an option indicating possession of at least one type of insurance (private and/or governmental). Other participants, 22 (16.3%), reported they did not have any type of insurance.

Experience of a Loved One’s Death

Data about experience of a loved one’s death were elicited by choosing a “Yes” or

“No” response to the question: Have you experienced a loved one’s death? A total of 102

(75.6%) participants chose “Yes,” and 33 (24.4%) chose “No” as a response.

Chronic Disease and Overall Health Status

Using a yes-no question, it was indicated that 63% of the participants did not have any type of chronic disease. Data about overall health status were elicited by choosing one option from a list that included six categories as a response to the question: How do you rate your overall health status at the present time? Twenty-eight (20.7%) participants chose “Excellent,” 84 (62.2%) “Good,” 19 (14.1%) “Fair,” and 4 (3.0%) “Poor.”

Preference for EOL Care

Data about preference for end-of-life (EOL) care was elicited by choosing one or more categories from a list of options, including “Hospitalization,” “Intensive treatments such as surgery,” “Cardiopulmonary resuscitation (CPR),” “Mechanical ventilation,”

“Artificial nutrition (such as a feeding tube),” “Comfort and palliative care,” “Home care,” and “Other.” A total of 52 (38.52%) participants chose hospitalization and one or more type(s) of intensive interventions, including surgery, cardiopulmonary resuscitation

(CPR), mechanical ventilation, and artificial nutrition (such as a feeding tube). In addition, 61 (45.18%) chose comfort, palliative, and/or home care; 13 (9.63%) chose hospital and/or home care without intensive interventions; 9 (6.67%) chose “Other” specifying that they were not sure.

Communication of EOL Healthcare Wishes

The communication of EOL wishes by participants was indicated by choosing a

“Yes” or “No” response to the question: Have you communicated your end-of-life healthcare wishes in writing and/or verbally? Of the total number of participants, 64

(47.4%) responded “Yes” and 71 (52.6%) responded “No.”

Comparing Participants Based on Survey Type

Using t-tests and chi-squares, the participants were compared based on type of surveys completed, online or paper. Accordingly, the participants in the two groups were significantly different only in terms of their ages and number of cohabitant persons.

There was a significant difference between age of the participants who completed the online (M = 60.02, SD = 7.93) and paper (M = 64.88, SD = 10.77) surveys (t [133] =

2.611, p = .01). This result suggested that age influenced choosing the type of survey.

Younger individuals frequently chose online surveys.

There was also a significant difference between number of persons living with the participants in the two groups, online (M = 2.28, SD = 1.40) and paper (M = 1.27, SD =

1.15) surveys (t [133] = -3.39, p = .001). These results suggested that participants with more cohabitants completed online surveys more than those who were living alone. The participants in the two groups were not significantly different in terms of other demographic characteristics.

Comparing Participants Based on Survey Language

Using t-tests and chi-squares, the participants were compared based on their completed survey languages, English or Persian. T-test results indicated that there was a significant difference between the number of children of participants who completed

English (M = 1.95, SD = 1.33) and Persian (M = 2.49, SD = 1.23) surveys (t [133] = 2.45, p = .01). These results suggest that number of children is associated with choosing the language of survey. Individuals with lower number of children chose English surveys.

There was also a significant difference between years of living in the U.S. and completion of the surveys in English (M = 28, SD = 12.76) and Persian (M = 18.85, SD =

14.97) (t [133] = -3.80, p < .001). The participants who lived longer in the U.S. completed the English survey greater than others. There was a significant association between the number of cohabitants and completion of the surveys in English (M = 1.80,

SD = 1.35) and Persian (M = 2.34, SD = 1.42), t (133) = 2.26, p = .02. Having more cohabitants was associated with completion of Persian surveys. The association between acculturation level and completion of the surveys in English (M = 19.38, SD = 4.58) and

Persian (M = 14.79, SD = 5.19) (t [132] = -5.40, p < .001) was significant. Participants who completed surveys in English had greater levels of acculturation to the U.S. culture.

There was a significant association between attitudes and completion of the surveys in

English (M = 10.77, SD = 3.26) and Persian (M = 8.62, SD = 2.96) (t [131] = -3.10, p <

.001). Participants who completed surveys in English had higher favorable attitudes toward planning ahead for EOL care.

The results of chi-square test showed that the relationship between education level and survey language was significant (X2 [3, N = 135] = 22.64, p < .001). The participants with greater levels of education completed the English survey more than others. The chi- square test also showed a relationship between marital status and the survey language (X2

[3, N = 135] = 8.39, p = .03). Only those participants who reported that they were divorced or separated were more likely to speak in English (p = .036). The relationship between religion and the survey language was significant (X2 [4, N = 135] = 11.64, p =

.02). However, differences in the survey language across the five religions listed on the survey (Muslim, Jewish, Christian, Zoroastrian and Baha’i) were not statistically significant. Only those that selected “Other” for religion significantly differed on survey language wherein they were more likely to speak in English (p = .029). There was a statistically significant relationship between residential status and the survey language (X2

[1, N = 135] = 7.11, p = .008). U.S. citizens completed the English version more than permanent residents. The relationship between overall health status and the survey language (X2 [3, N = 135] = 11.58, p = .009) was also significant. Only those that selected

“Excellent” for their overall health status significantly differed on survey language wherein participants with excellent health status were more likely to speak English (p =

.023).

Preliminary Analysis of Research Instruments

Chapter 3 included a discussion about the reliability and validity estimates of the established measures of the Attitude Toward Advance Decision Making (ATADM) scale,

Spiritual Perspective Scale (SPS), Acculturation Scale (AS), Health Care System Distrust

Scale (HCSDS), and Lubben Support Network Scale-6 (LSNS-6) in their original version. This work established the estimates of reliability of the newly translated version of these measures.

Reliability of the Measures

The reported reliability of the measures in Chapter 3 are also presented in Table 2.

In the present study, the translated/Persian version of the measures showed moderate to high estimates of reliability (N = 153, α = .71–.92), as presented in Table 2. The values for the measures are comparable with the values of Cronbach’s Alpha that was reported in other studies. The only exception is the reliability of the English version of the

HCSDS, which is moderately lower in this study compared to others.

Table 2

Internal Consistency of Persian Version of the Measures Using Cronbach’s Alpha Variable Name N α (Persian) α (English) Items

ATADM 135 .71 .72 4 SPS 135 .92 .92 10 AS 135 .88 .84 6 HCSDS 135 .73 .60 10 LSNS-6 135 .77 .80 6 Note. ATADM = Attitude Toward Advance Decision Making; SPS = Spiritual Perspective Scale; AS = Acculturation Scale; HCSDS = Health Care System Distrust Scale; LSNS-6 = Lubben Support Network Scale-6.

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Mean Scores of Measures and Assumptions of Parametric Statistics

Mean scores and standard deviations of the total scores of the measures were calculated using descriptive statistics (Table 3). The assumptions of parametric statistics are normal distribution, skewness, and kurtosis (Curran, West, & Finch, 1996).

Differences from the normal curve distribution of data may affect analysis and results

(Tappen, 2011). The Attitude results were analyzed to examine distribution of scores in the sample. The histogram charts visually indicated that the data were normally distributed and met assumptions of parametric statistics (Figure 1). The data were also examined for skewness and kurtosis. If skewness and kurtosis are less than 2, then assumptions of normality are met (Curran et al., 1996). The kurtosis for the sample was

1.099. The skewness was .30, and the standard error of skewness was .18.

Table 3

Mean and Standard Deviation of Measures’ Total Scores Range M SD N ATADM 4–16 9.63 3.30 135 SPS 10–60 42.30 12.97 135 AS 5–25 16.93 5.45 135

HCSDS 10–50 33.00 4.85 135 LSNS-6 0–30 15.60 5.33 135 Note. M = mean, SD = standard deviation.

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Figure 1. Distribution of Scores of the Attitude Scale

Analysis of Research Questions

In this section, the statistical results and findings are presented for the two research hypotheses proposed in this study.

Research Question 1 (RQ1): How are spirituality, acculturation, healthcare system distrust, and social support related to attitudes toward planning ahead for EOL care?

Hypothesis 1 (H1): Higher levels of acculturation to the mainstream culture and social support with lower levels of distrust of the healthcare system and spirituality are related to more favorable attitudes toward planning ahead for EOL care. To test this hypothesis, Pearson Correlations was used.

Pearson Correlations is a measure of the strength and direction of association between two variables measured on at least an interval scale (Field, 2009). Using Pearson

Correlations, the strength and direction of association between the total mean scores of the Attitude Toward Advance Decision Making (ATADM) scale and individual measures

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of the Spiritual Perspective Scale (SPS), Acculturation Scale (AS), Health Care System

Distrust Scale (HCSDS), and Lubben Support Network Scale-6 (LSNS-6) were assessed

(see Table 4). The results showed that the ATADM was negatively correlated with SPS (r

= - .22, p = .007). The ATADM was positively associated with AS (r = .42, p <.001). The

ATADM was also positively correlated with HCSDS (r = .15, p <.05). The correlation between ATADM and LSNS-6 was not significant (r = .03, p >.05). Based on these results, the H1 was supported in terms of acculturation and spirituality. The H1 was not supported in terms of healthcare system distrust and social support.

Table 4

Correlation Between Measures HC System Social Measures Attitudes Acculturation Spirituality Distrust Support 1. Attitudes - (ATADM) 2. Acculturation 0.42** - (AS) 3. HC System Distrust 0.15* 0.24* - (HCSDS) 4. Social Support 0.03 0.05 -0.13 - (LSNS-6) 5. Spirituality -0.22* -.22* -.20* 0 - (SPS) Note. * p < .05, ** p < .001

Research Question 2 (RQ2): How are attitudes toward planning ahead for EOL care related to proactive actions to communicate EOL wishes?

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Hypothesis 2 (H2): The second research hypothesis states that more favorable attitudes toward planning ahead for EOL care is associated with proactive actions to communicate EOL wishes. Logistic regression was used to test Hypothesis 2 (H2).

The logistic regression analysis was conducted to predict proactive actions to communicate EOL wishes—a binary outcome variable—using attitudes toward planning ahead for EOL care as the predictor. The model showed that the attitudes significantly predicted the proactive actions to communicate EOL wishes (X2 = 1.12, df = 1, p = .04)

(Table 5). Exp (B) value indicates that when attitudes are raised by one unit the odds ratio is 1.12 times as large, and therefore the participants are 1.12 more likely to communicate

EOL wishes. To evaluate the fit of the logistic regression model, the result of a

Goodness-of-Fit (GOF) test for the logistic regression—Hosmer and Lemeshow (H-L) test—was considered to decide whether the model is correctly specified. If the H-L goodness-of-fit test statistic is non-significant (p ≥ .05), we fail to reject the null hypothesis that there is no difference between observed and model-predicted values, implying that the model’s estimates fit the data at an acceptable level. The H-L test was not significant (p = .34); this significance level indicated that the logistic regression model is a good fit for data.

Table 5

Logistic Regression of ATADM Scale Predicting Proactive Actions to Communicate EOL Wishes Predictor B S.E. Wald df p Exp (B) 95% CI

Attitude (ATADM) 0.114 0.05 4.28 1 0.04 1.12 [1.01, 1.25]

Constant -1.24 0.57 4.84 1 0.03 0.29 Note. CI = confidence interval for Exp (B)

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Based on the results of logistic regression, the H2 was supported, as a significant relationship was found between the attitudes (ATADM) and the proactive actions toward planning ahead for EOL care.

Summary

This chapter described the findings of this investigation regarding the relationships of the four variables—spirituality, social support, healthcare system distrust, and acculturation—and attitudes toward planning ahead for EOL care. Additionally, the chapter described whether the attitudes toward planning ahead for EOL care can predict the sample of Iranian Americans’ proactive behaviors to communicate EOL wishes. A description of the sociodemographic and health information of the sample and the reliability estimates of the translated/Persian version of the study measures were presented. Statistical analyses related to the research questions were explained. Chapter 5 entails discussions of the findings of this study.

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CHAPTER FIVE: DISCUSSION

Chapter 5 is a discussion of findings of a study about Iranian-American older adults’ attitudes and proactive actions toward planning ahead for end-of-life (EOL) care.

This chapter begins with an overview of the study, followed by a discussion of findings related to research questions, the literature review, and the theoretical framework.

Limitations of this inquiry and implications for education, practice, research, and policy are considered.

Overview of the Study

Several problems of concern for the population of ethnically diverse older adults prompted this effort: (a) lower rates of planning ahead for EOL care compared to others that may jeopardize quality of care among this population, (b) different attitudes toward planning ahead for EOL care that may be closely associated with how people decide for and approach EOL, and (c) physical, emotional, and financial burdens due to unmade decisions that may impact people, families, and societies of diverse ethnicities and cultures. These concerns may arise, especially when people of different cultures decline to plan for their future or EOL care. Leininger and McFarland (2015) stated that to provide culturally safe and appropriate care for people of diverse cultures, appropriate actions, decisions, or plan of care need to be discovered based on individual values. She believed that etic views and biases of healthcare providers need to be withheld and emic views of people or receivers of care need to be valued.

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To construct holistic knowledge-based care, the grand theory of Culture Care seeks comprehensive care data on the basis of multiple factors, such as individuals’ worldview and spirituality, political and economic considerations, family ties, technology, language, and cultural history. Additionally, to study these factors in a population that concurrently experiences transitional processes of acculturation and aging toward EOL, the midrange theory of Transitions helps to guide the discovery of factors to promote transcultural nursing practices.

For this study, several research directions were identified. First, this study aimed to describe relationships between attitudes toward planning ahead for EOL care and conceptually important variables, including social support, spirituality, healthcare system distrust, and acculturation in Iranian-American older adults. This research study also intended to describe the relationship between attitudes and proactive actions/behaviors toward planning ahead for EOL care in the participants. In general, this study intended to quantitatively elicit attitudes and behaviors for planning ahead for EOL care in an

Iranian-American community; this would help to recognize ways in which nurses and other healthcare professionals can provide culturally competent care at EOL.

There are increasing numbers of global migrations indicating a critical need for sensitive care for ethnically and culturally diverse people. Leininger and McFarland

(2015) indicated that there are diversities of decisions, plans, and practices among different communities, even when considering diverse emic views and values; diversities of plans and practices may also indicate individuals’ fears and resistance to health professionals, as these professionals may use new technologies and treatment modes that do not fit their values and lifeways. She also declared that people of different cultures

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may be frustrated and misunderstood by the ignorance of health professionals about people’s cultural beliefs, values, and expectations.

This study was performed quantitatively, which may be described as a descriptive, cross-sectional survey design. The study was approved by the Florida

Atlantic University IRB. The major variables addressed in this inquiry were EOL attitudes toward planning ahead and proactive behaviors to communicate EOL wishes.

The population of interest included Iranian-American adults over age 50, both first and second generations, who resided in the U.S. A sample of Iranian-American older adults willing to complete a survey related to EOL attitudes and actions was employed. The setting was the U.S. in which flyers and links to the survey were distributed through convenience and snowball sampling.

A Qualtrics web-based link was created, which included original English and translated Persian versions of the instruments, the Attitude Toward Advance Decision

Making (ATADM) scale, Spiritual Perspective Scale (SPS), Acculturation Scale (AS),

Health Care System Distrust Scale (HCSDS), and Lubben Support Network Scale-6

(LSNS-6). A letter to participants, which provided details about the purpose of the research and the investigators’ information, including contact telephone number and email address, also was employed. The participants could choose between online and paper surveys, as well as English and Persian versions of the survey. SPSS Version 24.0 was employed for data analysis, including analyses of sociodemographic data and data related to the research questions that encompassed testing the reliability of the translated

Persian version of the instruments.

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Brief Overview of the Significance of This Study

As the world’s population is becoming older, a universal concern that has caught scholars’ and researchers’ attention is that individuals who are dying naturally of old age or of terminal irreversible chronic conditions are often subjected to invasive procedures and tests at EOL, which do not fit individuals’ values and expectations (Cardona-Morrell et al., 2016; Leininger & McFarland, 2015). Cardona-Morrell et al. (2016) believed that

“a culture of ‘doing everything possible’” for patients in terminal health conditions may contribute to a significant number of patients who are subjected to excessive treatments and tests in advanced stages of chronic diseases and near EOL, as well as deaths in intensive care units and acute care settings. These outcomes also may lead to ﬁnancial and emotional burdens and suffering to patients, families, and societies (Gawande, 2014;

Rahemi & Williams, 2016). To reduce these burdens, it is imperative to discover ways to use creatively meaningful theories in order to conduct research to enable competent care congruent with specific cultural values and needs of people who experience multiple transitional processes, especially acculturation and aging toward EOL (Leininger &

McFarland, 2015; Meleis et al., 2000; NINR, 2011).

Relevant literature indicated that there were multiple factors which have been shown to be paramount to the issue of inappropriate EOL care and excessive, undesired treatments in terminal stages. These factors included lack of EOL discussions and communication failures between patients and providers; disagreements, different cultural beliefs, and diverse spiritual principles among providers; lack of discussion with patients about treatment limitations; and lack of knowledge about advance care planning

(Cardona-Morrell et al., 2016; Lopez, Amella, Strumpf, Teno, & Mitchell, 2010).

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Downar et al. (2015) stated that advance care planning and communication of EOL wishes are among the most important factors that contribute to higher rates of excessive interventions and physical and emotional burdens at EOL. Cardona-Morrell et al. (2016) in their systematic review, reported that although evidence has indicated the negative consequences of excessive interventions for patients, families, and healthcare systems and professionals, this problem has remained a challenging issue in healthcare systems and societies for at least the past two decades.

Since there was no study on the Iranian-American older adult community, a gap in the scope of sample and setting was highlighted in the literature review. Therefore, the present inquiry addressed this gap and surpassed the scope of all samples in the literature review, as it comprised a national sample of Iranian-American older adults in the U.S.

This sample was optimal to determine factors related to attitudes and behaviors toward planning ahead for EOL care using the theories.

Discussion of Findings

Results of this investigation included details about sociodemographic characteristics of the sample and findings related to the research questions, the literature review, and the theoretical framework.

Overall Findings Related to the Review of the Literature

The present study attempted to address the gaps acknowledged in the literature review regarding an ethnically diverse older adult community’s attitudes and behaviors to communicate EOL wishes. This gap was addressed regarding the use of Culture Care and

Transitions theories. These theories were applicable to guide the study of older adults

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from culturally different communities in the U.S. who are in the dynamic processes of life.

The review of literature confirmed the assumption of Culture Care Theory regarding this issue that values and behaviors are likely to be different among different ethnic communities and people. In fact, cultural diversities and commonalities are the main focuses of this theory. Several factors were distinguished in the reviewed studies on a set of culturally diverse communities. The review of literature also indicated a need for using nursing and caring theories as conceptual frameworks to provide contexts for culturally competent care. Studies in this area were mostly conducted in the largest U.S. ethnic and racial groups, including African Americans, Hispanic Americans, and Asian

Americans. Therefore, in this section, the results of the current study will be discussed in the context of studies of other populations, which used different theoretical frameworks.

In the U.S., completion of advance directives (ADs) is the popular form of planning ahead for EOL care. In contrast, as it was discussed in chapter 1, a formal AD is not a culturally defined norm for an Iranian-American community, which may be associated with less technologies and choices for EOL care in their home country. Still, it has been a norm for this community to think about what would happen when one died or is dying and to identify their desires in the form of written or verbal communication to significant others. Although the written communications are mostly about the distribution of their properties and similar arrangements, some healthcare issues, such as home care or institutionalization at EOL, are considered in these communications, especially in verbal communications. Therefore, for this study, and to fully capture a variety of ways that older Iranian Americans communicate EOL care wishes, the investigator chose to

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include verbal communications as well as written documentations of EOL wishes.

Inclusion of verbal and written communication of EOL wishes for investigating EOL planning was a strategy selected to obtain meaningful data in this exploratory study to improve EOL care in this understudied subgroup of the U.S. society.

Sociodemographic and Health Characteristics of the Sample

Analysis of the sample revealed pertinent sociodemographic findings about age, gender, place of birth, education, marital status, insurance status, years living in the U.S., number of children, number of persons in a household, religious affiliation, residential status, place of residence, experience of a loved one’s death, self-reported chronic health problems, and self-reported health status. Of the sample, over half were female, over three-fourths were married, and ages spanned from 50 to 86 years. The high proportion of marriage among the participants may reflect the value of marriage among Iranians in general.

A majority of the sample were insured, and most of them lived in their private homes. Participants were primarily college educated, and about one-third had a graduate degree. These findings are consistent with general descriptions of Iranian Americans as a highly educated community with a high social status in the U.S. (Iranian Studies Group

[ISG], 2004). According to the United States Census Bureau (2011), 58% of Iranian

Americans aged 25 or over had at least a bachelor’s degree, and 27% had a graduate degree. The U.S. Bureau’s statistics are consistent with the findings of this study. ISG

(2004) also reported that the educational level of Iranian Americans is above the U.S. national average, including averages for native-born and foreign-born Americans.

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The number of years living in the U.S. spanned from 1 to 75 years. The number of their children ranged from 0 to 6, and the number of persons living with the participants also ranged from 0 to 6. Their religion was mostly Islam. However, about one-fifth of them were non-Muslim. The results indicated that most of the participants were born in

Iran and were the first generation immigrants, which is in line with PAAIA (2014) that

Iranian Americans are among the newest immigrant communities in the U.S. About four- fifths were U.S. citizens, and nearly three-fourths resided in Florida. This finding is related to the fact that most of the convenience sampling was performed in South Florida.

Based on PAAIA (2014), about 37% of Iranian Americans reside in California, especially

Los Angeles. The next states with a high proportion of Iranian Americans include New

York, Texas, Maryland, Virginia, Georgia, Florida, and Washington, D.C. (PAAIA,

2014). Although Iranians prefer to live in areas with pre-existing family and business ties, they are not concentrated in any specific region or metropolitan area in the U.S. In general, many immigrants with higher levels of socioeconomic status have no co-ethnic bonds compared to immigrants with lower levels of socioeconomic status (Portes &

Rumbaut, 2006).

The results also showed that over three-fourths had experienced a loved one’s death. Most of them rated their overall health as good and excellent. Most participants preferred comfort and palliative care and would decline intensive care at EOL. A small portion of the participants were not certain about their desires for EOL care.

Approximately, half of the participants had communicated their EOL care wishes through verbal discussions and/or written documentations, and the other half had not

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communicated these wishes. Findings related to the research questions may elicit some factors related to the communication of EOL wishes in this sample.

Findings Related to Research Questions

Findings were presented in Chapter 4 with respect to the two research questions posed. These questions guided the study:

1. How are spirituality, acculturation, healthcare system distrust, and social support related to attitudes toward planning ahead for EOL care?

2. How are attitudes toward planning ahead for EOL care related to proactive actions to communicate EOL wishes?

Relationships between attitudes toward planning ahead for EOL care and spirituality, acculturation, healthcare system distrust, and social support. Results of the data analysis conveyed the directions and strengths of relationships between attitudes toward planning ahead for EOL care and other factors among this sample of Iranian

Americans. Comparisons were made between attitudes toward planning ahead for EOL and spirituality, acculturation, healthcare system distrust, and social support. The H1 was rejected in terms of the two results: As the level of healthcare system distrust increased, the favorable attitudes to plan ahead increased, which is against the H1. Additionally, the level of social support and attitudes were not significantly associated, which was not consistent with the H1.

Findings as they relate to review of literature. Although death is a universal concept, individuals and families show different attitudes, behaviors, and actions when they prepare for or face the transitional period of EOL (Chen, Haley, Robinson, &

Schonwetter, 2003; Rahemi & Williams, 2016). People of different cultural norms show

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different values, actions, and behaviors when experiencing universal transitional periods, such as EOL. Members of ethnically diverse communities have specific attitudes and cultural responses toward health conditions (Givens et al., 2007). Therefore, research teams have addressed the importance of examining individuals’ attitudes in terms of EOL care (Ko & Berkman, 2012; Shimada et al., 2015). To explain the importance of attitudes and values, researchers have stated that ethnically diverse communities, even those in which people have previously completed ADs, acknowledged the importance of family- centered decisions and God’s authority over their documented choices in ADs (Seymour,

Payne, Chapman, & Holloway, 2007). Therefore, culture-specific findings stress the value of care-recipients’ norms and attitudes in developing models of care, especially at

EOL (Johnson et al., 2008; Leininger & McFarland, 2015). Findings of several studies have shown different factors that may influence attitudes toward planning for EOL among a variety of communities. Although relevant studies have been conducted in different populations using different theories, their findings in general are in line with the results of the current study in the Iranian-American community.

Cultural values are central to attitudes about how people plan or behave in the context of critical health transitions (Johnson et al., 2008). Kreps and Sparks (2008) also stated that cultural beliefs and values are central to individuals’ attitudes and reactions in terms of choosing health care and services. The value of culture in explaining ethnically diverse populations’ attitudes and practices opens up the discussion of acculturation, which is a complex transitional process of facing and adopting new values, traditions, and attitudes that individuals and communities undergo as a result of long-term contacts with a new culture (Schwartz et al., 2007). The concepts of culture, acculturation, and EOL are

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intertwined and closely related to the theories of Culture Care and Transitions. Therefore, in the transitional processes of life, such as acculturation and EOL, culturally competent care is the main goal of the caring discipline of nursing.

Cristancho et al. (2014) believed that individual attitudes and desires differ not only among different cultures, but also within a single culture due to different levels of acculturation. In the current study, the most significant factor associated with attitudes toward planning ahead for EOL care was acculturation. This finding showed that among

Iranian-American older adults, greater levels of acculturation to American culture, or greater adoption of American cultural patterns, were associated with greater favorable attitudes to plan for EOL care. In the current study, the importance of acculturation, which is representative of cultural transition, illustrates the significance of culture in designing care for people at EOL, which is consistent with the theory of Culture Care. It has been a cultural norm in Iranian society to plan for EOL in general, often with special attention to disposition of property and caring for the family after death; however, the greater level of acculturation to American culture may also be indicative of higher levels of planning ahead for EOL care. Lara et al. (2005) also acknowledged the importance of acculturation to explain some variations in health perceptions and behavioral patterns among ethnically diverse populations. Considering the importance of acculturation,

Cristancho et al. (2014) suggested that acculturation-sensitive methods, in addition to culturally competent approaches, are essential for healthcare providers to address ethnically diverse populations’ specific health conditions and needs. The participants of this study were highly educated, insured, and acculturated to the U.S., although they were often relatively new immigrants to the U.S. This information indicates that this

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community may have necessary resources and knowledge to become familiar with the

U.S. healthcare system and available options, as well as their rights, for care and EOL.

Therefore, with increasing the level of acculturation, they are more likely to communicate their EOL care wishes.

In the studies on EOL, the concepts of culture, ethnicity, and spirituality were among the most important factors that were increasingly viewed as essential parts of EOL care for reducing suffering (Dose, Leonard, McAlpine, & Kreitzer, 2014; Rahemi &

Williams, 2016; Rahemi et al., 2016). Researchers believed that successful care, including EOL care, requires an appreciation of ethnicity, religiosity, and spirituality

(Kossman, 2014; True et al., 2005). In this study, Iranian-American older adults who represented lower levels of spiritual perspectives and practices had more favorable attitudes to gain mastery and plan ahead for EOL care compared to others. This result is consistent with the studies on other ethnically diverse communities in terms of the negative relationships between spirituality and planning for EOL care (Carr, 2011;

Kossman, 2014). In terms of AD completion, Carr (2011), Duffy et al. (2006), and

Winter and Parker (2007) reported that spirituality, religious affiliation, and belonging to ethnic minority communities may decrease AD completion. Johnson et al. (2008) stated that African Americans’ less-favorable attitudes, beliefs, and behaviors in the use of ADs and hospice care have been shown to be associated with their higher religious and spiritual beliefs and behaviors. According to True et al., (2005), people with a greater level of spirituality and religiosity believed that life is in the control of a higher power.

This belief is also popular among Iranians. Therefore, with higher levels of spirituality, the participants were less likely to plan ahead of time.

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In general, issues of trust are paramount in terms of determining attitudes toward

EOL care (Bullock et al., 2005; Johnson et al., 2008; Ko & Lee, 2014). Johnson et al.

(2008) indicated that higher distrust of healthcare systems among African Americans has negative effects on possession of an advance directive (AD) or attitudes toward hospice.

However, the results of the current study showed that higher healthcare system distrust is associated with more-favorable attitudes toward planning ahead for EOL care and proactively preparing for this transition process. This counter-intuitive and idiosyncratic result displays that among the sample of Iranian-Americans—an educated, affluent community in the U.S.—as healthcare system distrust increases, older adults’ desire to plan for, and control, their EOL care increases. In other words, with lower levels of trust of the healthcare system, participants preferred to not let healthcare providers plan for their care at EOL, but rather seek control and mastery over their own care. With regard to factors related to diversities of decisions and plans among diverse people, Leininger and

McFarland (2015) noted that culturally diverse people’s resistance to health professionals may be related to the use of new technologies and treatment modes that do not fit individuals’ values and expectations. People of different cultures may be frustrated due to health professionals’ ignorance of individuals’ cultural beliefs and values (Leininger &

McFarland, 2015); therefore, in a community of Iranian-American older adults, these people may seek control over their own care instead of letting healthcare providers decide for their care. This counter-intuitive result also may be associated with different scales used for measuring EOL care planning. Researchers in the U.S. often have used AD completion as a measure of planning for EOL care; AD is a document mostly among healthcare paperwork. However, in this study, the investigator addressed all types of

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communication of EOL care wishes—which are mostly independent from healthcare system paperwork—as the measure of planning for EOL care. Therefore, one could infer that when the participants felt more distrust of the healthcare system, they were more likely to plan for care independently, as well as more likely to include formal AD completion within healthcare system documents. However, the Cronbach’s alphas of the

English version of healthcare system distrust scale in this study was moderately low, which may bias the interpretation of the result. Further studies, especially qualitative studies, are recommended to accurately interpret the results in this understudied population.

The findings showed that social support was not associated with attitudes toward planning ahead for EOL care that did not support the H1. This result was consistent with the study conducted by Ko and Lee (2014). Ko and Lee (2014) did not report any significant result regarding an association among social support, attitudes toward completion of ADs, and AD completion. The distinction between the current study and

Ko and Lee’s (2014) was that the majority of the participants in Ko and Lee’s (2014) study demonstrated limited levels of social support, while the participants in the current study had relatively high levels of social support. People with high levels of social support may have lower levels of documentation or legal conveyance of EOL care wishes, due to availability of people’s support when they need it. However, they have higher levels of discussion or communication of the wishes with their significant others for conditions that might occur. These two-directional effects of social support may have neutral outcomes when assessing the association of social support and planning.

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Results of this study on Iranian-American older adults were consistent with assumptions of Leiniger’s (1995) theory: People’s and communities’ values and practices are influenced by multiple factors related to worldview and social structure, including spirituality, political and economic considerations, family ties, education, technology, language expressions, environmental contexts, and cultural history, which all may influence healthcare outcomes. This broad and multifaceted view can provide a holistic perspective for understanding people’s beliefs, attitudes, and practices related to EOL care. The social structure factors elicited in this study may influence care of people from different cultures in general, and help provide new insights to construct culturally congruent care.

Relationship between attitudes toward planning ahead for EOL care and proactive actions to communicate EOL wishes. The results related to this research question indicated that the attitudes toward planning ahead for EOL care significantly predicted the proactive actions to communicate EOL wishes. Based on the findings, the research Hypothesis 2 (H2) was supported, indicating that more-favorable attitudes toward planning ahead for EOL care is associated with proactive actions to communicate

EOL wishes. The participants with a more-favorable attitude to plan for EOL care were more likely to communicate their EOL wishes through verbal discussions and/or written documentation.

Finding as it relates to review of literature. Meleis et al. (2000) believed that the main goal of a healthy transition is achieving a sense of mastery and balance in the transition process. They indicated that personal and contextual factors, such as meanings attributed to events, cultural transitions, cultural preferences and attitudes, and

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socioeconomic status, may facilitate or hinder progress toward a healthy transition.

Consistent with the theory and previous studies, more-favorable attitudes toward planning ahead for EOL care were associated with higher communication of EOL wishes through verbal discussions or written documentations. In this study, communication of wishes is representative of gaining mastery and proactivity during transition processes of acculturation and EOL. As previously explained, in studies on other groups of older adults in the U.S., the comparable variable to planning ahead for EOL was completion of

ADs. Therefore, this result supports Ko and Lee’s (2014) result, which indicated that in a sample of older adults, more-favorable attitudes toward completion of ADs are associated with greater AD completion. Other studies regarding AD completion also supported this finding (Campbell et al., 2007; Johnson et al., 2008). Kossman (2014) also reported that

AD completion varies by individuals’ attitudes toward ADs and EOL care.

Evidence showed that ethnically diverse older adults frequently refuse to plan for

EOL care or communicate their wishes. The lack of EOL planning, together with the need for culturally competent EOL care for older adults, urges researchers to study factors related to communication of EOL care wishes among this population (Duffy et al.,

2006; Johnson et al., 2008; Rich et al., 2009). Garrido et al. (2015) specified that rationales for valuing AD completion may include improvement of individuals’ EOL outcomes, such as costs and quality of life. Kossman (2014) stated that individuals who plan for their EOL care or complete ADs are less likely to receive unwanted treatments— including invasive interventions and feeding tubes, to experience burdensome transitions between place of residence and hospitals, and to die in acute care settings. None of these treatments are likely to be congruent with individuals’ cultural values and expectations

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(Kossman, 2014). However, as Culture Care and Transitions theories indicate, cultural unique needs, values, and practices are important factors for healthy transition and preparing high-quality EOL care for people.

The main goal of the Culture Care Theory was to discover the cultural and care factors influencing humans in health, illness, and dying in order to improve nursing practices. Leininger and McFarland (2015) discussed that to provide culturally competent care, diversities and similarities of behaviors and decisions among culturally diverse communities need to be frequently studied and distinguished. According to transcultural caring, nurses can discover appropriate behaviors, decisions, or plan of care on the basis of individuals’ emic views and expectations while avoiding nurses’ etic biases. The focus needs to be on care meanings, values, and practices related to care receivers’ cultures

(Leininger & McFarland, 2015). In regard to the importance of exploring care receivers’ cultural interests and needs, Leininger and McFarland (2015) declared that the real concern is that the ideas of healthcare professionals may surpass people’s real expectations and views. Therefore, knowledge of emic views, beliefs, and practices is central to the theory (Leininger, 1995). For example, if predetermined medical guidelines

(etic views) are established for people with terminal health problems, intensive treatments may surpass individuals’ cultural norms and decisions about care (emic views).

Throughout this study, the expressions and patterns of culturally based attitudes and behaviors were considered in order to construct a holistic knowledge base for culturally competent care.

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Findings Related to Theoretical Framework and Caring Science

It is essential to integrate nursing theories and research to promote nursing practice (Figure 1). Since culture-related factors have been shown to be important for people at end-of-life (EOL), culturally competent care is crucial to be considered in studies of EOL care on ethnically diverse older adults (Johnson et al., 2008; Ko & Lee,

2014). Culture Care Theory emphasizes caring and culture to improve well-being. Older adults of different cultural backgrounds may also experience multiple transitional processes, including acculturation and aging that may encompass transition from life to death. Meleis et al. (2000) stated that unexpected and unknown changes during transitional processes may affect how people seek healthcare and plan for their care. At

EOL, individuals and family caregivers may face many challenges resulting in emotional stress during the last years of life. Outcomes of unexpected changes may indicate the importance of planning ahead for EOL care as soon as people realize that they may be in the transitional process of life to death. The nurses’ role is imperative to help older adults and family members to “successfully navigate these transitions” (Rose et al., 2012, p. 1).

Therefore, the concepts of caring, culture, and transition are central components of nursing practice and research (Chinn, 2012; Leininger, 2006).

In the present study, the focus was on the community of Iranian-American older adults’ attitudes and values regarding EOL care in order to provide the context for culturally competent EOL care. The central focus of this study was on the concept of caring. Leininger (2006) emphasized that the greatest component of nursing is caring.

Caring refers to assisting persons or groups with anticipated needs in order to improve their experiences during critical transitions.

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Caring is an essential need for human growth, development, and survival as well as death and dying (Leininger & McFarland, 2015). Although caring for culturally different people is an essential need, it is a global challenge and concern because care needs to be specific and appropriate to various transition processes and cultures of the world; thus, expressions, patterns, and processes of caring need to vary based on those diverse cultures and transitions (Leininger & McFarland, 2015). Culture Care Theory specifies that care can be therapeutic when cultural values and practices are recognized and integrated into human care. In this study, cultural values and practices of the population of Iranian-American older adults were addressed to help provide the knowledge base for caring for people during transitional processes of acculturation and aging to EOL.

Figure 2. Study as It Relates to Theoritical Framework and Caring Science 124

Limitations

Although this inquiry provided answers to the questions posed, this section concerns three limitations associated with this study. First, this work was limited to a convenience and snowball sample of older adults living in the U.S. who identified themselves as Iranian-Americans. The lack of random selection of the participants lends itself to potential bias as the sample may not be representative of the population, and the findings cannot be generalized to the entire population of Iranian-American older adults.

To avoid bias, a national sample was targeted to reach across the U.S. using the online surveys; however, the non-random sample of the participants did not include a national sample with diverse geographic and demographic characteristics. For example, although a higher proportion of Iranian Americans live in California, the most participants of this study reported that they were living in Florida, where the study was performed. A more diverse sample should be included in a future study. In general, the findings from this study may inform and assist future studies on this understudied population.

Second, although the instruments had been used previously in other populations in the U.S., they had not been tested previously on the population of Iranian Americans. For this study, the Cronbach’s alphas for the English and Persian instruments were calculated.

The values were mostly between .71 and .92, which was satisfactory. However, the

Cronbach’s alpha for English version of the healthcare system scale I this study was relatively low. The psychometric properties of the instruments need further study.

Third, for this study, the age of older adults was considered at least 50 years. In general populations, however, old age is considered to be at least 60 or 65. Nevertheless,

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studies of immigrant older adults included participants at the age of 50 and older due to the limited number of target populations under the study. Additionally, in Iran, people in their 50s are approaching some life changes, such as retirement, which are associated with old age in the U.S. However, it would have been helpful to include older ages for the purposes of our study. To mitigate this limitation and to assess the effects of age on the results, comparing the results between younger and older participants in this study would have been valuable.

Implications for Nursing

This research study sought to determine the relationships between attitudes toward planning ahead for end-of-life (EOL) care and conceptually important factors of acculturation, social support, healthcare system distrust, and spirituality in a population of

Iranian-American older adults. In designing the study, developing research questions, and conducting the analysis of the data, it was necessary to assess the contribution of this study to nursing. As such, discussions on the implications for nursing education, practice, research, and public policy follow.

Implications for Nursing Education and Practice

Implications for education and practice require academic nursing education and nursing staff development. The findings from this study support the need for education regarding culturally competent strategies for providing care while acknowledging major transitions, such as acculturation and EOL. Nurses need preparation regarding culturally competent and person-centered care at initial levels of education to become knowledgeable in ways that they incorporate specific factors, such as acculturation, into ethnically diverse older adults’ assessments and EOL care. Based on the theory of

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Culture Care, nurses cannot rely only on fragments of medical and psychological knowledge in education and practice, and a holistic knowledge of culture care is imperative, especially at EOL. Nursing faculties and clinical nurse educators can use the findings of studies on culturally diverse populations to advance the body of knowledge about transcultural nursing in order to prepare nurses for practice in culturally diverse settings and ensure culturally competent care at EOL for a diverse population.

Appreciation of diversity in cultural backgrounds and norms helps nurses to create a caring environment in which nurses and older adults collaboratively address older adults’ needs and values (Rahemi & Williams, 2015). Nurses are on the frontline to improve culturally competent dialogues and interventions about health strategies with older adults to promote communication of EOL care wishes and mastery to take action in the transition processes of acculturation, aging, and EOL. The U.S. population is becoming increasingly diverse and older; thus, governmental or private funding can be valuable to support culturally competent educational and innovative approaches to encourage communication of EOL wishes at the community, local, regional, state, and national levels.

Nurses often face several difficulties, such as workloads and understaffing, when trying to maintain the balance between knowledge, skills, and caring in practice settings

(Buerhaus et al., 2012). As a result of these difficulties, nursing interventions and procedures are prioritized in practice over the patients’ desires and needs (Rahemi &

Williams, 2015). In addition to other responsibilities, nurses often are the main providers responsible for patient care and education. Therefore, healthcare leaders need to support nurses to enhance their involvement for promoting culturally competent care for older

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adults, especially in terms of EOL care. Education for nurses needs to include guidelines for nurse educators and leaders that delineate strategies to support nurses and address how older adults and nurses can work collaboratively to embrace older adults’ cultural needs and values (Rahemi & Williams, 2015).

This study discovered that acculturation was the most significant predictor of attitudes to plan for EOL care, and attitudes significantly predicted communication of

EOL care wishes. Sociodemographic descriptions about this group as educated, affluent, and largely non-U.S. born provide an opportunity to understand the commonalities and diversities among these immigrant and non-immigrant groups. The evidence that shows the breaches between ethnically diverse communities in the U.S. in terms of planning ahead for EOL care should alert nurse educators to the problems that ethnically diverse older adults may face. Nurses need to be educated about specific care accommodations that were quantified in this research and related studies in order to advance understanding of the needs of diverse groups of older adults. They can embrace the purpose of transcultural nursing in their practice as to how to use research-based knowledge to discover cultural care values and practices to care for people of different cultures, especially at EOL. The Transitions Theory also guided this study to elicit the factors related to mastery and proactivity in order to enhance healthy transitions toward EOL. In this multicultural world, it is essential for nurses to discover cultural similarities and diversities, and use this knowledge for provision of cultural care and therapeutic outcomes at EOL. The theories of Culture Care and Transitions are useful for nursing faculties and clinicians to provide the context for appropriate and culture-specific care at

EOL in ethnically diverse older adults’ communities. Using the theories and findings of

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related studies, nursing faculties can promote and teach ways to provide culturally competent care that is effective for people of different cultures (Leininger, 1995).

Implications for Nursing Research

Nurses are on the frontline of care (Lin, Tsai, & Chen, 2011), which provides opportunities to engage nurses in research to better understand culturally competent care at EOL. As professionals on the frontline of care, nurses also need to understand what facilitates and hinders planning for EOL care so that they can help promote EOL care among culturally diverse populations. Recommendations for further studies require strategies by which research methods employed in this work may be enhanced. In considering recommendations for future research, the limitations of this study should also be addressed, as these limitations may have influenced the findings and interpretation of the results. The first limitation in this study was selection bias due to a non-random sampling because participants volunteered to participate, which potentially biased the sample to only those interested in the subject. Future research needs to include a more representative sample of Iranian-American older adults using a different methodology.

The second limitation was related to the study instruments, which were for the first time used in this population, and had not been tested previously on the population of Iranian-

American older adults. Replication of this work is valuable with a similar population to gauge the reliability of the results. The third limitation addressed the age of the participants. The age of older adults in this study was 50 or older, which was lower than the age of older adult participants in studies among the general population in the U.S.

Although this range of age was consistent with several studies on immigrant populations, in future studies, older age can be considered for participants. Additionally, even

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recruiting participants with a same range of age as this study’s participants, researchers can compare the data based on the participants’ ages as young-old and as old-old. The other important factor is gender. The findings from such studies can also add to our findings that attitudes and behaviors to communicate EOL wishes change with age and gender.

As paper- and web-based surveys in English and Persian languages were used for data collection, in order to diversify samples in future studies, it is also recommended that the use of both formats may help in the recruitment of participants who do not have access or skill to use computers, or who lack language proficiency. In this study, as more than 80% of the participants chose to complete the web-based survey, this researcher found a preference for web-based survey completion among this community. As discussed in Chapter 1 and 2, because of political issues between countries, Iranian

Americans hesitate to identify their origin; therefore, the use of computer-based research might be beneficial to support anonymity and privacy for participants, and helpful to reach target sample sizes. Additionally, in this research it was noted that data about the number of Iranian Americans varied widely. Therefore, it is necessary for researchers to find credible sources of information to support studies specifically about such communities that are mostly understudied. This effort would be specifically valuable as the diversity of the U.S. continues to increase.

A review of relevant research elucidated a repertoire of disciplines in which research on EOL planning was conducted, including sociology, social work, medicine, education, and psychology. This study, conducted by a nurse, added to the interdisciplinary knowledge of the subject of EOL care. The prospect of interdisciplinary

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research leads to collaborative discovery among professionals of all disciplines within and outside of healthcare. Leininger and McFarland (2015) also stated that systematic and interdisciplinary studies rather than fragmented and superficial knowledge of care is beneficial in order to provide culturally competent care.

According to the literature review, there has been much research regarding EOL care planning on the basis of AD completion, which has addressed the general U.S. population and some large ethnic minority communities. However, to improve the quality of EOL care in this diverse society, study of other ethnically diverse populations is paramount, particularly using different measures of EOL care planning other than AD, which is not culturally defined in some communities. This investigator addressed planning ahead for EOL care through verbal communications and/or written documentation about EOL care wishes. More research is needed in ethnically diverse populations to determine factors related to planning ahead for EOL care for the purpose of improving EOL care. Future research needs to include an assessment of health status and preferences for EOL care and their association with how older adults plan for their

EOL care. Future research may focus on whether health status, preferences for EOL care, and sociodemographic factors make a difference in planning ahead for EOL care wishes.

In future studies, researchers can compare data from paper and online surveys, as well as

English and translated versions of instruments, to provide more details about significant variables in the field of EOL care studies. Furthermore, future qualitative studies may be valuable for better understanding of EOL meaning and factors related to the improvement of well-being at EOL as well as better interpretation of the results.

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Implications for Public Policy

There is a large body of literature indicating that people at EOL do not receive their desired treatments, such as adequate pain medication or palliative/comfort care, and have to receive intensive treatments through machines and tubes in a way that challenges their dignity and autonomy at EOL (Hanchate et al., 2009; Hoffmann & Tarzian, 2005;

Pan et al., 2015; Rahemi & Williams, 2016). These interventions, however, do not help dying patients and families to deal with the emotional and psychological pressures during the transitional process of EOL (Hoffmann & Tarzian, 2005). The problem continues while the knowledge, expertise, and resources are provided to support people’s dignity and autonomy at EOL. The resources include governmental and financial supports, such as Medicare hospice benefit (MHB) (Hoffmann & Tarzian, 2005). Several factors are in evidence regarding the reasons for underutilization of comfort care and overutilization of intensive care, which include cultural and attitudinal factors and lack of awareness about benefits of resources. However, some reasons are associated with government and policies. These policies, particularly at the federal level, may lead to inappropriate care at

EOL for diverse communities in the society. Policies are needed to specifically address a balance in the dyad of overutilization and underutilization of services at EOL, especially for older adults.

Planning ahead for EOL care, which is compatible with completion of ADs in

American culture, is a factor that may enhance the quality of care, satisfaction, dignity at

EOL, and mastery over EOL care. However, completion of ADs may not be congruent with the cultural beliefs of some older adults (Lorenz, Rosenfeld, & Wenger, 2007).

Therefore, the results of studies with different designs, measures, and populations can

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have implications for the development of culturally competent and innovative policies and programs that may improve EOL care. With the use of “one-size-fits-all healthcare delivery models, programs, and policies,” a large number of individuals, especially those from ethnically diverse and aging societies, will be misunderstood and mistreated when designing care for EOL (Johnson et al., 2008, p. 1957). Therefore, it is valuable if healthcare providers, researchers, and policymakers design, test, and implement culturally competent programs that accommodate the wide range of cultural beliefs, values, and preferences in the multicultural U.S. society. Furthermore, comparing the rate of AD completion by White Americans (26%) (Rao, Anderson, Lin, & Laux, 2014) and the rate of communication of EOL wishes by Iranian American older adults (47.4%) highlights a need for an introduction of innovative strategies, instead of just relying on

AD completion, for increasing the likelihood of EOL care planning in the U.S.

To design, test, and implement innovative programs for EOL care, several collaborative federal initiatives have been launched to develop and encourage a scientific basis for EOL care. The National Institute of Nursing Research (NINR), as part of the

National Institutes of Health (NIH), was elected the principal NIH Institute on research in

EOL care (NINR, 2013). In 1997, NINR began a series of studies on EOL with collaboration of other institutions, such as the NIH Office of Alternative Medicine, the

National Cancer Institute (NCI), and the National Institute of Dental and Craniofacial

Research. This work was an effort to encourage collaboration of researchers to evaluate the current literature and plan for future studies on EOL care. Another purpose of this effort was to support research throughout the NIH as well as across federal agencies.

These efforts became the basis for funding to support EOL research (NINR, 2013).

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Another collaborative federal initiative was the 2001 workshop on EOL Issues in

Genetic Illnesses in collaboration with various NIH Offices and Institutes and another

2001 trans-U.S. Department of Health and Human Services (DHSS) agency and private foundation supported Integrative Workshop on End-of-Life Research. There are also a repertoire of other offices and institutes, including the National Institute on Aging (NIA),

National Cancer Institute, National Center for Complementary and Alternative Medicine, or NCCAM, and National Institute of Mental Health (NIMH), that systematically develop initiatives to study and test innovative programs for EOL care.

Despite the importance of research on EOL care for NIH and other federal agencies, the literature showed that ethnically diverse communities have been understudied, and the study of EOL wishes has been focused only on a limited number of ethnic minority groups, including African Americans, Hispanic Americans, and Asian

Americans (Rahemi & Williams, 2016; Rahemi et al., 2016). However, an inquiry of other ethnic groups reveals the significant contribution of other ethnically diverse groups in the U.S. society that indicates the importance of further studies to improve culturally competent EOL care for all in the U.S.

Results from this study provide valuable insight into how acculturation, spirituality, social support, and healthcare system distrust can predict Iranian-American older adults’ attitudes toward planning ahead for EOL care, and how these attitudes can predict communication of EOL wishes. These results may be used to guide public policies in terms of designing programs to enhance people’s proactivity and communication of EOL wishes, and ultimately improve culturally competent EOL care for the diverse population of the U.S. The policy process, from proposal to program

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implementation, is influenced by multiple authorities and conflicting interests (Longest,

2006). However, as an earlier section discussed, NINR was elected as the principal NIH

Institute on research in EOL care. Additionally, nurses are a commanding workforce in healthcare settings. In the U.S., the number of nurses was more than 2.71 million in 2012 and is projected to be 3.24 million by 2022 (American Association of Colleges of

Nursing, 2014). The significance of NINR in EOL research as well as the number of nurses who are mostly on the frontline of care illustrate a distinctive opportunity for nurses to influence EOL care in the legislative arena. Nurses must endeavor to inform local, national, and global policy development to respond to the needs of people with diverse cultural backgrounds. Among healthcare professionals, nurses have more opportunities to cultivate relationships with older adults and families to initiate and facilitate conversations about available options as well as desires for EOL (Martin &

Roberto, 2006). Facilitating discussions about advance care planning aims beyond providing a document, and requires illustrating different possible options of treatment for older adults and their families to make their greatest choices (Martin & Roberto, 2006).

Policy development can help attain public health goals through campaigns for solutions. Nurses need to be active in policy development and to be knowledgeable about laws (The Library of Congress, 2015) that may influence EOL care. To prepare nurses as active members of policy development, policy courses must be included in the educational programs for undergraduate and graduate students. Nurses must be prepared to be actively involved in nursing associations and organizations at the state and local levels in order to achieve governmental grants and scholarships to support nursing research and education (Milstead, 2013). To improve EOL care, nurses need to consider

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that the domain of nursing care is beyond acute healthcare settings so that they need to be active in public policies about social determinants of EOL care and legislative processes.

Furthermore, general knowledge obtained from research on understudied populations may inform high-ranking policy-makers and the public, in general, about different sub-groups of the U.S. society. In general, Americans’ knowledge about Iranian

Americans is limited, and they often confuse Iranian Americans with Arab-Americans,

Indian-Americans, and other ethnic groups. It is valuable for policy-makers to know that

Iranian Americans are among the most educated and socioeconomically active members of the U.S., and acknowledge Iranian Americans’ significant contributions to the U.S.

This information may help reduce discrimination and stigmatization against Iranian

Americans as a result of political and governmental conflicts.

Conclusion

Interest for this study stemmed from a lack of knowledge about EOL care in the ethnically diverse population of Iranian-American older adults. Using Culture Care and transitions theories, factors that may be helpful for culturally and ethnically diverse people throughout the transitional processes of acculturation and EOL have been discovered. Although ongoing research and initiatives aim to uncover the ways in which older adults experience EOL based on their values and desires, many ethnically diverse populations have been understudied, which leads people to spend the last days or months of their lives in a way different from what they have desired. The concept of AD, which is significantly accepted in American culture, is not recognized in some groups within the diverse society of the U.S., calling for further research to introduce new measures of EOL planning. Advance care planning provides an opportunity for older adults and families to

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plan ahead for their EOL care when they are still living a healthy life. Thus, older adults’ preferences and desires will be regarded when they are no longer able to make decisions.

This investigator addressed verbal and written types of communication of EOL wishes—as indicators of mastery and proactivity—to examine the variables that may facilitate or hinder conveyance of EOL wishes among the understudied population of

Iranian-American older adults. Regarding ethnically diverse communities in the U.S., researchers need to go beyond the documentation of ADs and offer innovative strategies by which individuals can achieve more authority and control over their EOL care.

Innovative strategies may guarantee a reception of care compatible with individuals’ preferences, values, and cultures as well as their lives’ transitional processes. In this study, the most significant factor related to favorable attitudes toward planning ahead was acculturation. Additionally, attitudes predicted whether older adults communicate their

EOL wishes. These results highlight the importance of culture through the process of acculturation in planning for EOL.

Through research, healthcare professionals can propose innovative strategies and urge older adults with different cultural backgrounds to think about EOL conditions.

Thus, they can provide the context for culturally competent care by which older adults’ desires are met and family members’ burdens of last-minute decisions are prevented.

Nurses are in a good position to actively engage in such initiatives. Use of Culture Care and Transitions theories has helped uncover significant variables that may be associated with EOL care in the population of Iranian Americans.

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APPENDICES

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Appendix A. IRB Approval

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Appendix B. Recruitment Flyer

Florida Atlantic University

Study Title: Attitudes and actions toward planning ahead for end of life care

➢ Investigators: Dr. Lynn Dunphy, Ph.D., Zahra Rahemi, Ph.D. student, Florida Atlantic University, Christine E. Lynn College of Nursing ➢ Purpose: To identify factors related to decision making for healthcare before serious illnesses occur. ➢ You are eligible to participate if you: a) are aged 50 and older b) are an Iranian American, either first or second generation c) reside in the U.S. d) are able to provide informed consent and independently complete a written/online survey in English/Persian. ✓ People living in institutions, such as nursing homes, are not eligible to participate.

➢ Benefit: In general, Iranian Americans are an understudied population in the U.S. With completion of this study, you can help improve knowledge about the specific needs of this community in the U.S. This knowledge may ultimately inform scholars, policymakers, and healthcare providers to acknowledge Iranian Americans in their practice and decisions. ➢ Risk: A possibility of emotional stress related to a few questions about serious illnesses and death. • Time required to complete the survey: About 20 minutes • How to participate? You can select one option for accessing the survey from the following options: o Contact the investigator to share the link to you via an email; o Contact the investigator to mail you a paper-based survey. ✓ If you prefer the paper-based survey, please note: (a) You can return the surveys only via mail; (b) Prepaid self-addressed postage envelopes will be provided by the investigator; and (c) Please do not include any type of identifying information, such as mailing address or name, in the survey.

To participate in this study, you will complete a 54-item, multiple-choice or fill-in-the-blank survey.

Please return the completed web- or paper-based survey by 10/31/2016.

If you have any pertinent questions, need any help, want to request the paper-based survey, and/or are interested in being informed of the final findings related to the study, please contact:

Zahra Rahemi at (561) 927-5508, email address: [email protected]

PLEASE DISTRIBUTE THE FLYERS TO PERSONS WHO MAY BE ELIGIBILE TO PARTICIPATE AND ARE LIVING IN ANY OF THE U.S. STATES.

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Appendix C. Inform Consent Form

Title: ATTITUDES AND ACTIONS TOWARD PLANNING AHEAD FOR END OF LIFE CARE

Investigator: Dr. Lynne Dunphy Add credentials

Student investigator: Zahra Rahemi Add credentials

Thank you for your interest in participating in our research study. You should have found the survey, in English or Persian, in paper format or via an online link. The purpose of the study is to identify factors related to decision making for healthcare before serious illnesses occur. To participate in this study, you will complete a 54-item, multiple-choice or fill-in-the-blank survey. You will be asked to answer questions about your cultural behaviors and beliefs, beliefs about advance decision making, trust/distrust in healthcare systems, social support, spirituality, and your general information (such as age, gender, overall health status, etc.). It should take you no more than 20 minutes to complete this survey. Your participation in this study is your choice. You may skip any questions that make you feel uncomfortable, and you are free to withdraw from the study at any time without penalty. Your responses to the questions will be anonymous, and we have no way to link a response to a particular participant. The only risk involved with participating in this study is a possibility of emotional stress related to a few questions about serious illnesses and death. As a remedy for this concern, you can skip any question or discontinue participation at any time. The potential benefit related to your participation is improving knowledge about the Iranian-American community in the U.S. In general, Iranian Americans are an understudied population in the U.S. American people and scholars do not have adequate knowledge regarding this population. Improving knowledge about this community may ultimately inform scholars, policymakers, and healthcare providers to acknowledge Iranian Americans in their practice and decisions. At the beginning of the questionnaire, there is a question about your agreement to the terms in the informed consent. If you agree to the statements in this form, please check “Yes” and continue to answer the questions on the following pages. If you experience problems or have questions regarding your rights as a research subject, contact the Florida Atlantic University Division of Research at (561) 297-1383. For other questions about the study, you may call the principal investigator: Dr. Lynne Dunphy at (561) 297-4646 and Zahra Rahemi at (561) 927-5508. Please keep a copy of this statement for your records: In the case of paper surveys, you can keep the page related to the consent form; In the case of online surveys, you can save the email containing the consent form to your computer.

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Appendix D. Inform Consent Form (Persian Version)

عنوان مطالعه: نگرشها و عملكردهاي مربوط به برنامه ريزي براي مراقبتهاي آخر حيات

پژوهشگر: دكتر لين دانفي

دانشجو: زهرا راحمي

از همکاری شما جهت شركت در مطالعه سپاسگزاریم. شما بایستي پرسشنامه حاضر را با زبان انگليسي یا فارسي، و به صورت پرینت شده یا از طریق یك لينك اینترنتي دریافت كرده باشيد. هدف این مطالعه این است كه عوامل مرتبط با تصميم گيری برای مراقبتهای سالمتي قبل از ایجاد بيماریهای خطرناك بررسي شود. برای شركت در این مطالعه، شما یك پرسشنامه ٥٤ سؤالي بصورت چند گزینه ای یا جای خالي را تکميل خواهيد نمود. از شما خواسته مي شود كه به سؤالهای مربوط به مسایل فرهنگي، تصميم گيری قبل از ایجاد بيماریهای جدی، اعتماد یا عدم اعتماد به سيستم مراقبهای سالمتي، حمایت اجتماعي، معنویت، و اطالعات عمومي )مانند سن، جنس، سطح كلي سالمتي، و غيره( پاسخ دهيد. تکميل پرسشنامه حدود ٢٠ دقيقه زمان نياز دارد. شركت در این مطالعه بستگي به انتخاب شما دارد. چنانچه سؤاالت باعث ناراحتي شما مي شود، شما مي توانيد سؤال موبوطه را پاسخ نداده و یا تکميل پرسشنامه را در هر زماني بدون هيچ گونه عواقبي متوقف كنيد. این پژوهش به صورت بي نام بوده و هيچ راهي جهت شناسایي پاسخ دهنده وجود ندارد. تنها خطری كه ممکن است برای شما به عنوان یك شركت كننده وجود داشته باشد احتمال استرس عاطفي مربوط به چند سؤال در رابطه با بيماریهای خطرناك و مرگ مي باشد. در این صورت مي توانيد از مطالعه خارج شوید. مزیت شركت در مطالعه افزایش دانش و آگاهي در مورد ارزشها و نگرشهای افراد ایراني مقيم امریکا مي باشد. بصورت كلي، جمعيت ایراني-امریکایي یك جمعيت مطالعه نشده در امریکاست. لذا، امریکایيها و محققان دانش كافي در زمينه این جمعيت ندارند. با تکميل این پرسشنامه شما مي توانيد به پيشرفت دانش مربوط به ارزشها و نيازهای خاص این جمعيت كمك كنيد. این دانش در نهایت مي تواند به آگاه سازی محققان، سياست گذاران، و ارائه دهندگان خدمات بهداشتي و لذا اهميت دادن به نيازهای جمعيت ایراني-امریکایي، هم در عملکرد و هم در تصميم گيری، بيانجامد.

در صورت داشتن سوال، جهت سؤاالت مربوط به حقوق خود بعنوان یك شركت كننده به دانشگاه فلوریدا اتالنتيك، بخش تحقيقات با شماره ٥٦١٢٩٧١٣٨٣ تماس بگيرید. جهت سایر سؤاالت مربوط به مطالعه با محققان اصلي شامل دكتر لين دانفي با شماره ٥٦١٢٩٧٤٦٤٦ و یا زهرا راحمي با شماره ٥٦١٩٢٧٥٥٠٨ تماس حاصل فرمایيد. لطفا یك كپي از این رضایتنامه جهت ذخيره و استفاده خود تهيه فرمایيد: در صورت دریافت پرسشنامه به صورت پرینت شده، شما مي توانيد صفحه مربوط به رضایتنامه را برای خود نگه دارید؛ در صورت دریافت پرسشنامه از طریق ایميل، شما مي توانيد متن ایميل كه حاوی فرم رضایتنامه مي باشد را در كامپيوتر خود ذخيره نمایيد.

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Appendix E. Recruitment Flyer (Persian Version)

عنوان پژوهش: نگرشها و عملكردهاي مرتبط با برنامه ريزي براي مراقبتهاي آخر حيات

پژوهشگران: دكتر لين دانفي، زهرا راحمي، دانشگاه فلوريدا اتلنتيك، دانشكده پرستاري كريستين اي. لين

هدف پژوهش: بررسي فاكتورهاي مربوط به تصميم گيري براي مراقبتهاي سالمتي قبل از وقوع بيماريهاي جدي

شما واجد شرايط شركت در اين مطالعه هستيد، اگر:

)الف( بيش از ٥٠ سال سن داريد؛ )ب( يك ايراني امريكايي )نسل اول يا نسل دوم( هستيد؛ )ج( در امريكا زندگي مي كنيد؛ و )د( توانايي الزم جهت رضايت دادن براي ورود در مطالعه و تكميل مستقالنه پرسشنامه بصورت اينترنتي يا روي كاغذ و به زبان انگليسي يا فارسي داريد.

افرادي كه در مؤسسات، مانند خانه سالمندان، زندگي مي كنند واجد شرايط برای ورود به اين مطالعه نمي باشند.

مزيت شركت در مطالعه: بطور كلی، ايراني امريكاييها يك جمعيت مطالعه نشده در امريكا مي باشند. با كمك به تكميل اين مطالعه، شما مي توانيد در پيشرفت دانش در مورد نيازهاي خاص اين گروه در امريكا كمك كنيد. نهايت ًا اين دانش مي تواند باعث آگاه سازي پژوهشگران، سياستگذاران، و ارائه دهندگان مراقبتهاي سالمتي و توجه آنها به اين گروه طي عملكردها و تصميم گيري هايشان شود.

ضرر شركت در مطالعه: تنها خطر ممكن براي شما به عنوان يك شركت كننده احتمال استرس عاطفي مربوط به چند سؤال در رابطه با بيماريهاي خطرناك و مرگ مي باشد.

زمان الزم براي تكميل اين پرسشنامه: حدود ٢٠ دقيقه

چگونگي شركت: شما مي توانيد يكي از روشهاي زير را جهت دسترسي به پرسشنامه انتخاب نماييد:

١. جهت دريافت آدرس لينك مربوط به مطالعه با پژوهشگر تماس حاصل فرماييد؛

٢. جهت تهيه فرم پرينت شده )كاغذي( پرسشنامه با پژوهشگر تماس بگيريد.

در صورتی که فرم پرینت شده )کاغذی( را ترجیح می دهید، لطف ًا به اين موارد توجه فرماييد: )الف( به دليل محرمانه بودن اطالعات شما در پرسشنامه، شما بایستی پرسشنامه تكميل شده را فقط از طريق پست ارسال فرمایید؛ )ب( پاكتهاي نامه، حاوي آدرس پژوهشگر و تمبر، توسط پژوهشگر براي شما تهيه مي شود؛ )ج( لطف ًا هيچگونه اطالعات شناسايي، مثل نام و آدرس، در داخل پرسشنامه یا روی پاکت نامه وارد نفرماييد.

جهت شرکت در این مطالعه، شما ٥4 سوال چند گزینه ای یا جای خالی پاسخ خواهید داد. پرسشنامه های تکمیل شده را بایستی تا تاریخ 3١/١٠/٢٠١6 به اینجانب ارسال فرمایید.

در صورتي كه شما هر گونه سؤالي مربوط به پژوهش داريد، قصد درخواست پرسشنامه پرينت شده داريد، و يا عالقه به نتايج نهايي اين مطالعه داريد، با شماره تلفن يا آدرس ايميل زير تماس بگيريد:

زهرا راحمي،

شماره تلفن: ٥6١٩٢٧٥٥٠٨

آدرس ايميل:

[email protected]

لطف ًا اطالعات اين بروشور را براي کسانی كه احتما ًال واجد شرايط ورود به مطالعه هستند و در هر يك از ايالتهاي امريكا زندگي مي كنند ارسال فرماييد.

143

Appendix F. Body of Email

Thank you for your interest in participating in this study. The current survey is designed for the Ph.D. dissertation entitled “Attitudes and Actions Toward Planning Ahead for End of Life Care,” under supervision of Dr. Lynne Dunphy at Florida Atlantic University. The purpose of the study is to identify factors related to decision making for healthcare before serious illnesses occur.

To participate in this study, you will complete a 54-item, multiple-choice or fill-in-the-blank survey. It should take you no more than 20 minutes to complete. You may complete this survey using your computer or smart phone. Your participation in this study is your choice. Your responses to the questions will be anonymous, and we have no way to link a response to a particular person.

The only risk involved with participating may be emotional stress related to a few questions about serious illnesses. The potential benefit is improving knowledge about the Iranian-American community that is understudied in the U.S. Improving knowledge about this community may ultimately inform healthcare professionals to acknowledge Iranian Americans in their practice and decisions.

If you have any question regarding the study, you may call Zahra Rahemi at (561) 927-5508 or [email protected]

Please select ONLY ONE link (English or Farsi) to complete:

Survey link (in English): Survey Link (English) - Zahra Rahemi

لینک پرسشنامه )به فارسی(: Survey Link (Farsi) - Zahra Rahemi

144

Appendix G. Body of Email (Persian Version)

از همکاری شما جهت شرکت در مطالعه مربوط به پایان نامه اینجانب سپاسگزارم. هدف این مطالعه بررسی عوامل مرتبط با تصميم گيری برای مراقبت های سالمتی، قبل از ایجاد بيماری های جدی، می باشد. شما یك پرسشنامه ٥٤ سوالی بصورت چند گزینه ای یا جای خالی را تکميل خواهيد نمود. تکميل پرسشنامه حدود ٢٠ دقيقه زمان نياز داشته و شرکت در این مطالعه بستگی به انتخاب شما دارد. این پژوهش به صورت بی نام بوده و هيچ راهی جهت شناسایی شخص پاسخ دهنده وجود ندارد.

مزیت شرکت در مطالعه افزایش دانش مربوط به ارزش ها و نيازهای خاص افراد ایرانی مقيم امریکا می باشد. این دانش در نهایت می تواند به آگاه سازی ارائه دهندگان خدمات بهداشتی و پيشرفت عملکرد و تصميم گيری آنها بيانجامد. الزم به ذکر است که فقط احتمال استرس عاطفی مربوط به چند سوال در رابطه با بيماری های جدی برای شما وجود دارد. مطالعه با عنوان "بررسی نگرش ها و عملکرد های مربوط به برنامه ریزی برای مراقبت های آخر حيات" تحت نظارت دکتر لين دانفی، دانشگاه فلوریدا اتالنتيك، می باشد. در صورت وجود هر گونه سوال با شماره تلفن و یا آدرس ایميل زیر تماس حاصل فرمایيد.

زهرا راحمی ٥6١٩٢٧٥٥٠٨ [email protected]

جهت تکميل پرسشنامه، لطفا فقط یك لينك )انگليسی یا فارسی( انتخاب کنيد:

لينك پرسشنامه)به فارسی(: Survey Link (Farsi) - Zahra Rahemi

Survey link (in English): Survey Link (English) - Zahra Rahemi

145

Appendix H. Measurement Instruments

Before We Begin

(a) You are eligible to participate in this study if you: (a) are aged 50 and older; (b) are an Iranian American, either first or second generation; (c) reside in the U.S.; and (d) are able to provide informed consent and independently complete a written or online survey in English or Persian. Iranian Americans who live in nursing homes or other institutions cannot participate. Do you meet the above criteria to participate?  1. Yes  2. No

(b) Informed Consent Notice: To participate in this study, you will complete a 54-item, multiple- choice or fill-in-the-blank survey. It should take you no more than 20 minutes to complete this survey. Your participation in this study is your choice. You may skip any questions that make you feel uncomfortable, and you are free to withdraw from the study at any time without penalty. Your responses to the questions will be anonymous, and we have no way to link a response to a particular participant. The only risk involved with participating in this study is a possibility of emotional stress related to a few questions about serious illnesses and death. As a remedy for this concern, you can skip any question or discontinue participation at any time. The potential benefit related to your participation is improving knowledge about the Iranian-American community in the U.S. In general, Iranian Americans are an understudied population in the U.S. American people and scholars do not have adequate knowledge regarding this population. Improving knowledge about this community may ultimately inform scholars, policymakers, and healthcare providers to acknowledge Iranian Americans in their practice and decisions. Do you agree with the terms in the informed consent notice?  1. Yes  2. No

146

Sociodemographic and Health Questionnaire

In this survey, there are no right or wrong answers. Answer each question to the best of your ability by checking only one box (use check mark √) or writing a number in the specified space. The first questions are needed for statistical purposes only.

1. Age: ______

2. Gender:  Male  Female

3. Place of birth:  Iran  U.S.  Other (please specify: ______)

4. Education level:  Less than high-school diploma  A high-school diploma  Some college degree or a bachelor degree  More than a bachelor degree

5. Marital status:  Never married  Married  Divorced/Separated  Widowed

6. Number of children: ______

7. What is your religion?  Muslim  Jewish  Christian  Zoroastrian  Baha’i  Other (please specify) ______

8. Residential status in the United States:  Citizen  Permanent resident

9. Place of residency?  Private home  Children’s home Another relative’s home  Other (please specify) ______

10. What state do you reside in? ______

11. Years you are living in the US: ______

12. Number of persons living with you? ______

147

13. Do you have any type of health insurance status in the United States?  Yes  No

14. Have you experienced a loved one’s death?  Yes  No

15. Do you have any type of chronic health problems (including hypertension, diabetes, heart or lung problem, stroke, and/or cancer)?  Yes  No

16. How do you rate your overall health status at the present time?  Excellent  Good  Fair  Poor  17. If you experienxce terminal health conditions, which of the following items do you prefer (You may choose more than one item):  Hospitalization  Intensive treatments such as surgery  Cardiopulmonary resuscitation (CPR)  Mechanical ventilation  Artificial nutrition (such as feeding tube)  Comfort and palliative care  Home care  Others. Please identify______

18. Have you communicated your end-of-life healthcare wishes in writing and/or verbally?  Yes  No

148

Acculturation Scale

19. How well do you speak English?  Not at all  Not very well  Fairly well  Well  Very well

20. What language do you usually use with your family?  Only Persian  Mostly Persian  Persian and English equally  Mostly English Only English

21. In what language are the TV programs or Videos you watch?  Only Persian  Mostly Persian  Persian and English equally  Mostly English  Only English

22. In what language are the books, magazines, or newspaper you read?  Only Persian  Mostly Persian  Persian and English equally  Mostly English  Only English

23. What kind of food do you eat?  Only Persian food  Mostly Persian food  Persian food and other food equally  Mostly non- Persian food  Only non- Persian food

24. Whom are you spending most of your time with?  Only Iranians  Mostly Iranians  Iranians and non-Iranians equally  Mostly non-Iranians  Only non-Iranians

149

Attitude Toward Advance Decision Making (ATADM) scale

People may experience serious illnesses that are not curable and may lead to terminally ill situations and loss of an ability to communicate. Some people prefer to identify their care preferences before such situations. Considering these situations, for the following items, please check only one box.

25. It is the best to wait until the situation arises to make decisions about treating very serious illness, rather than writing them down in advance.  Agree strongly  Agree somewhat  Disagree somewhat  Disagree strongly

26. Doctors should not discuss death and dying with their patients because doing so could be harmful to the patients.  Agree strongly  Agree somewhat  Disagree somewhat  Disagree strongly

27. It is not necessary for people to write down their wishes about medical care because their family will know what to do when the time comes.  Agree strongly  Agree somewhat  Disagree somewhat  Disagree strongly

28. It is best to avoid talking about serious illnesses or death before they occur.  Agree strongly  Agree somewhat  Disagree somewhat  Disagree strongly

150

Health Care System Distrust Scale (HCSDS)

The next questions are about your opinion of the health care system in general. When we refer to the health care system, we mean hospitals, medical centers, health insurance companies, and medical research in the United States. For each statement below, please check how strongly you agree or disagree.

29. Medical experiments can be done on me without my knowing about it.  Agree strongly  Agree  Not Sure  Disagree  Disagree Strongly

30. My medical records are kept private.  Agree Strongly  Agree  Not Sure  Disagree  Disagree Strongly

31. People die every day because of mistakes by the health care system.  Agree Strongly  Agree  Not Sure  Disagree  Disagree Strongly

32. When they take my blood, they do tests they don’t tell me about.  Agree Strongly  Agree  Not Sure  Disagree  Disagree Strongly

33. If a mistake were made in my health care, the health care system would try to hide it from me.  Agree Strongly  Agree  Not Sure  Disagree  Disagree Strongly

34. People can get access to my medical records without my approval.  Agree Strongly  Agree  Not Sure  Disagree  Disagree Strongly

35. The health care system cares more about holding costs down than it does about doing what is needed for my health.  Agree Strongly 151

 Agree  Not Sure  Disagree  Disagree Strongly

36. I receive high-quality medical care from the health care system.  Strongly Agree  Agree  Not Sure  Disagree  Disagree Strongly

37. The health care system puts my medical needs above all other considerations when treating my medical problems.  Strongly Agree  Agree  Not Sure  Disagree  Disagree Strongly

38. Some medicines have things in them that they do not tell you about.  Agree Strongly  Agree  Not Sure  Disagree  Disagree Strongly

152

Lubben Support Network Scale-6 (LSNS-6)

The following questions are about your social supports. Items 39–41 address your family members and relatives, and items 42–44 address your friends.

FAMILY: For the first set of items, please consider the people to whom you are related, either by birth or marriage.

39. How many relatives do you see or hear from at least once a month?  None  One  Two  Three or four  Five through eight  Nine or more

40. How many relatives do you feel at ease with that you can talk about private matters?  None  One  Two  Three or four  Five through eight  Nine or more 41. How many relatives do you feel close to such that you could call on them for help?  None  One  Two  Three or four  Five through eight  Nine or more

FRIENDSHIPS: For the second set of items, please consider all of your friends, including those who live in your neighborhood.

42. How many of your friends do you see or hear from at least once a month?  None  One  Two  Three or four  Five through eight  Nine or more

43. How many friends do you feel at ease with that you can talk about private matters?  None  One  Two  Three or four  Five through eight  Nine or more

44. How many friends do you feel close to such that you could call on them for help?  None  One 153

 Two  Three or four  Five through eight  Nine or more

154

Spiritual Perspective Scale (SPS)

Answer each question to the best of your ability by marking an "√" in the space above that group of words that best describes you.

Not Less About About About About at than once once once once Question/Answers all once a year a a a a month week day year 45. In talking with your family or friends, how often 1 2 3 4 5 6 do you mention spiritual matters?

46. How often do you share with others the problems 1 2 3 4 5 6 and joys of living according to your spiritual beliefs?

47. How often do you read spiritually related 1 2 3 4 5 6 material?

48. How often do you engage in private prayer or 1 2 3 4 5 6 meditation?

Strongly Disagree Disagree Agree Agree Strongly Disagree more more Agree Question/Answers than than agree disagree 49. Forgiveness is an important part 1 2 3 4 5 6 of my spirituality.

50. I seek spiritual guidance in 1 2 3 4 5 6 making decisions in my everyday life.

51. My spirituality is a significant part 1 2 3 4 5 6 of my life.

52. I frequently feel very close to God 1 2 3 4 5 6 or a “higher power” in prayer, during public worship, or at important moments in my daily life.

53. My spiritual views have had an 1 2 3 4 5 6 influence upon my life.

54. My spirituality is especially 1 2 3 4 5 6 important to me because it answers many questions about the meaning of life.

155

Appendix I. Measurement Instrument (Persian Version)

قبل از شروع:

الف- شما واجد شرايط شركت در اين مطالعه هستيد، اگر: )الف( بيش از ٥٠ سال سن داريد؛ )ب( يك ايراني امريكايي )نسل اول يا نسل دوم( هستيد؛ )ج( در امريكا زندگي مي كنيد؛ و )د( توانايي الزم جهت رضايت دادن براي ورود در مطالعه و تكميل مستقالنه پرسشنامه بصورت اينترنتي يا روي كاغذ، به زبان انگليسي يا فارسي داريد. افرادي كه در مؤسساتی مانند خانه سالمندان زندگي مي كنند واجد شرايط برای ورود به اين مطالعه نمي باشند. آیا شما شرایط فوق را جهت ورود به مطالعه دارید؟  بله  خیر

ب( موارد فرم رضایتنامه: تكميل پرسشنامه حدود ٢٠ دقيقه زمان نياز دارد. شرکت در این مطالعه بستگی به انتخاب شما دارد. چنانچه سؤاالت باعث ناراحتی شما مي شود، شما مي توانيد سؤال موبوطه را پاسخ نداده و يا تكميل پرسشنامه را در هر زماني بدون هيچ گونه عواقبي متوقف كنيد. این پژوهش به صورت بی نام بوده و هیچ راهی جهت شناسایی پاسخ دهنده وجود ندارد. تنها خطر احتمالی استرس عاطفي مربوط به چند سؤال در رابطه با بيماريهاي خطرناك و مرگ مي باشد. مزیت شرکت در مطالعه افزایش دانش و آگاهی در مورد ارزشها و نگرشهای افراد ایرانی مقیم امریکا می باشد. بصورت كلي، جمعيت ايراني-امريكايي يك جمعيت مطالعه نشده در امريكاست. لذا، امريكاييها و محققان دانش كافي در زمينه اين جمعيت ندارند. با تكميل اين پرسشنامه شما مي توانيد به پيشرفت دانش مربوط به ارزشها و نيازهاي خاص اين جمعيت كمك كنيد. اين دانش در نهايت مي تواند به آگاه سازي محققان، سياست گذاران، و ارائه دهندگان خدمات بهداشتي و لذا اهميت دادن به نیازهای این جمعيت بيانجامد. آیا شما با موارد فرم رضایتنامه موافق هستید؟  بله  خیر

156

Sociodemographic and Health Questionnaire

در این پرسشنامه هیچ گونه جواب صحیح یا غلط وجود ندارد. هر سوال را طبق نظر شخصی خود با عالمت زدن روی تنها یک جواب )با چک مارک √( یا نوشتن یک عدد در جای خالی پاسخ دهید. سوالهای اول تنها برای اهداف آماری می باشد.

١. سن: -----

٢. جنس:  مرد  زن

٣. محل تولد:  ايران  امريكا  ديگر كشورها. لطف ًا مشخص كنيد: ------

٤. سطح تحصيالت:  كمتر از ديپلم دبيرستان  ديپلم  ليسانس یا فوق دیپلم  باالتر از ليسانس

٥. وضعيت تأهل:  مجرد  متأهل  جدا شده )طالق گرفته(  بيوه

٦. تعداد فرزندان: ------

٧. دین )مذهب(:  اسالم  يهودي  مسيحي  زرتشتي  ساير. لطف ًا مشخص كنيد ------

٨. وضعيت اقامت در امریکا:  تبعيت امريكا  اقامت دائم ) گرين كارت(

٩. محل اقامت:  منزل شخصی خودم  منزل فرزندان  منزل سایر افراد فاميل )بغیر از فرزندان(  ساير. لطف ًا مشخص كنيد ------

١٠. در چه ایالتی زندگی می کنید؟ ------

١١. تعداد سالهایی که در امريكا زندگي كرده ايد: ------

١٢. تعداد افرادی که با شما در يك منزل زندگي مي كنند:---

١٣. آیا در حال حاضر دارنده بيمه درمانی در امريكا می باشید؟  بله  خير

١٤. آیا شما تجربه از دست دادن يكي از عزيزانتان را داشته ايد؟  بله 157

 خير

١٥. آيا شما به هیچيك از بيماريهاي مزمن )شامل فشار خون باال، ديابت، بيماريهاي قلبي يا ريوي، سكته، و/يا سرطان( مبتال مي باشيد؟  بله  خير

١٦. در حال حاضر، وضعيت سالمتي خود را چگونه رده بندي مي كنيد؟  عالي  خوب  نه زياد بد  بد

١٧. چنانچه دچاربیماری جدي و العالجی شوید، كدام از موارد زير را ترجيح مي دهيد؟ )براي اين سؤال، شما مي توانيد بيش از يك مورد انتخاب كنيد.(  بستري شدن در بيمارستان  درمانهاي تهاجمي، مانند جراحي  احياي قلبي ريوي  تهويه مكانيكي )از طریق دستگاه تنفس مصنوعي(  تغذيه مصنوعي )تغذيه از طریق لوله معده(  مراقبتهاي تسكيني و مبتني بر آسايش  مراقبت در منزل  ساير. لطف ًا مشخص كنيد ----

١٨. آيا شما خواسته ها و نظریات درمانی مربوط به آخر حيات خود را به صورت نوشتاري یا گفتاری براي ديگران/اطرافیان مشخص كرده ايد؟  بله  خير

158

Acculturation Scale

١٩. مکالمه انگلیسی شمادرچه سطحی است؟  اص ًال  نه زياد خوب  تقریبا خوب  خوب  خيلي خوب

٢٠. معمو ًال با كدام زبان با خانواده خود صحبت مي كنيد؟  فقط فارسي  بيشتر فارسي  انگليسي و فارسي به يك اندازه  بيشتر انگليسي  فقط انگليسي

٢١. برنامه هاي تلويزيوني و فيلمهايي كه شما مشاهده مي كنيد به چه زباني هستند؟  فقط فارسي  بيشتر فارسي  انگليسي و فارسي به يك اندازه  بيشتر انگليسي  فقط انگليسي

٢٢. كتابها، مجله ها، و روزنامه هایی که مطالعه مي كنيد به چه زباني هستند؟  فقط فارسي  بيشتر فارسي  انگليسي و فارسي به يك اندازه  بيشتر انگليسي  فقط انگليسي

٢٣. چه نوع غذايي شما ميل مي كنيد؟  فقط غذاي ايراني  بيشتر غذاي ايراني  غذاي ايراني و ساير غذاها به يك اندازه  بيشتر غذاي غيرايراني  فقط غذاي غيرايراني

٢٤. با چه كساني بيشتر وقت خود را مي گذرانيد؟  فقط ايراني ها  بيشتر ايراني ها  ايراني ها و غيرايراني ها به يك اندازه  بيشتر غيرايراني ها  فقط غيرايراني ها

159

Attitude Toward Advance Decision Making (ATADM) scale

هر فردي ممكن است به شرايطي مثل يك بيماري خطرناك مواجه شود. در بعضي از موارد، اين بيماریها از نظر سيستم درماني قابل درمان نمي باشند و حتي ممكن است توانايي حرف زدن و يا بيان خواسته ها توسط شخص، به دليل پیشرفت بیماری، كاهش يابد. لذا، بعضي افراد ممكن است تمايل داشته باشند )يا بر عكس، تمايل نداشته باشند( كه پيش از آنكه اين بيماريها ايجاد شود يا سبب ناتواني آنها شود، نظرات و خواسته هایشان را درخصوص نحوه درمان خود شفاها یا بصورت کتبی با نزدیکانشان در میان بگذارند. میزان موافقت خود را در هر یک از موارد زیر، که مربوط به شرایط فرضی فوق می باشد، مشخص کنید. برای هر یک از سواالت زیر، لطفا تنها یک جواب عالمت بزنید.

٢٥. جهت تصميم گيري در مورد درمان بيماريهاي خیلی خطرناك، به جاي نوشتن تصميمها قبل از وقوع بيماري، بهتر است كه صبر كرده و وقتی شرايط ایجاد شد تصميم گرفته شود.  كام ًال موافقم  تقريب ًا موافقم  تقريب ًا مخالفم  كام ًال مخالفم

٢٦. پزشكان نبايستي در مورد مرگ با بيمارانشان بحث و گفتگو كنند زيرا چنین كاری مي تواند براي بيماران مضر باشد.  كام ًال موافقم  تقريب ًا موافقم  تقريب ًا مخالفم  كام ًال مخالفم

٢٧. براي مردم ضرورتي وجود ندارد كه خواسته هايشان را از قبل در زمینه مراقبتهاي پزشكي بنويسند زيرا وقتي كه زمانش برسد خانواده هايشان می دانند چه كاري بايستي انجام شود.  كام ًال موافقم  تقريب ًا موافقم  تقريب ًا مخالفم  كام ًال مخالفم

٢٨. بهترین کار آن است كه از صحبت در مورد بيماريهاي خطرناك یا مرگ قبل از وقوع آنها اجتناب شود.  كام ًال موافقم  تقريب ًا موافقم  تقريب ًا مخالفم  كام ًال مخالفم

160

Health Care System Distrust Scale (HCSDS)

سواالت ٣٨-٢٩ در مورد نظریات شما در زمینه سیستم بهداشتی و درمانی به صورت کلی می باشد. منظور ما از سیستم بهداشتی و درمانی، بیمارستانها و مراکز وابسته، ادارات بیمه، و تحقیقات پزشکی )در امریکا( می باشد. لطفا برای هر یک از سواالت زیر، تنها یک جواب عالمت بزنید.

٢٩. تستهای آزمایشگاهی ممکن است بدون اطالع اینجانب برروی من انجام گیرد.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

٣٠. اطالعات پزشكي من محرمانه حفظ مي شود.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

٣١. هر روز مردم بخاطر خطاهاي سيستم درماني از بين مي روند.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم  ٣٢. بهنگام نمونه گیری از خون، آزمايشاتي انجام ميدهند که با من در مورد آنها صحبت نمي شود.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

٣٣. اگر اشتباهي در مراقبتهاي درماني من اتفاق بيفتد، سيستم درماني تالش مي كند كه از من مخفي كند.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

٣٤. ديگران ميتوانند بدون اجازه من به اطالعات پزشكي من دسترسي پيدا كنند.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

٣٥. سيستم درماني به كاهش هزينه ها بیش از انجام اقداماتی درجهت تامین سالمت من اهمیت می دهد.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

٣٦. من مراقبتهاي پزشکی با كيفيت باال از سيستم درماني دريافت مي كنم.  كام ًال موافقم  موافقم  نميدانم  مخالفم

161

 كام ًال مخالفم

٣٧. حين درمان مشكالت پزشکی من، سيستم درماني نيازهاي درماني من را در رده باالتر از تمامي موارد ديگر در نظر مي گيرد.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

٣٨. بعضي داروها موادي در خود دارند كه سيستم درماني در مورد آنها به كسي چیزی نمی گویند.  كام ًال موافقم  موافقم  نميدانم  مخالفم  كام ًال مخالفم

162

Lubben Support Network Scale-6 (LSNS-6)

سواالت زیر در زمینه میزان حمایتهای اجتماعی شما می باشد. سواالت ٤١-٣٩ به خانواده و وابستگان و سواالت ٤٤-٤٢ به دوستان و همسایگان شما اختصاص دارد. لطفا برای هر یک از سواالت زیر، تنها یک جواب عالمت بزنید.

افراد فاميل: براي سؤال ٤1-٣٩، لطفا افرادي را در نظر بگيرید كه به شما وابستگي فاميلي )از طریق تولد یا ازدواج( دارند.

٣٩. چه تعداد از وابستگان خود را حداقل براي يك بار در ماه مي بينيد يا از آنها مي شنويد.  هيچكس  يك  دو  سه يا چهار  پنج تا هشت  نه يا بيشتر

٤٠. با چه تعداد از وابستگان احساس راحتي مي كنيد كه در مورد مسايل خصوصي صحبت كنيد؟  هيچكس  يك  دو  سه يا چهار  پنج تا هشت  نه يا بيشتر

٤١. با چه تعداد وابستگان احساس نزديكي مي كنيد تا جايي كه می توانيد با آنها جهت دريافت كمك تماس بگيريد؟  هيچكس  يك  دو  سه يا چهار  پنج تا هشت  نه يا بيشتر

دوستان: براي سؤاالت ٤٤-٤٢ ، لطفا تمامي دوستان خود )بعالوه همسایه ها( را در نظر بگيرید.

٤٢. چه تعداد از دوستان خود را حداقل براي يك بار در ماه مي بينيد يا از آنها مي شنويد.  هيچكس  يك  دو  سه يا چهار  پنج تا هشت  نه يا بيشتر

٤٣. با چه تعداد دوستان احساس راحتي مي كنيد كه در مورد مسايل خصوصي صحبت كنيد؟  هيچكس  يك  دو  سه يا چهار  پنج تا هشت  نه يا بيشتر

٤٤. با چه تعداد دوستان احساس نزديكي مي كنيد تا جايي كه بتوانيد با آنها جهت دريافت كمك تماس بگيريد؟  هيچكس  يك  دو  سه يا چهار  پنج تا هشت  نه يا بيشتر

163

Spiritual Perspective Scale (SPS)

سؤاالت ٤٥ تا ٥٤ مربوط به معنويت در زندگي شما مي باشد. لطف ًا براي هر سؤال تنها يك جواب عالمت بزنيد.

سوال/جواب هرگز کمتر از یک حدود یک حدود یک حدود یک حدود یک بار بار در سال بار در سال بار در ماه بار در هفته در روز

٤٥. در گفتگو با خانواده و دوستان، هر چند وقت یک بار در مورد 1 2 3 4 5 6 مسايل معنوي صحبت مي كنيد؟

٤٦. در خصوص مشکالت و یا خوبیهای زندگی کردن براساس 1 2 3 4 5 6 اعتقادات معنوی، هر چند وقت یکبار با دیگران صحبت می کنید؟

٤٧. شما هر چند وقت یک بار مطالب و کتابهای مربوط به معنويات را 1 2 3 4 5 6 مطالعه مي كنيد؟

٤٨. شما هر چند وقت یک بار به نماز, عبادات, یا مراقبه به صورت 1 2 3 4 5 6 خصوصي مي پردازيد؟

سوال/جواب كام ًال مخالف مخالف موافق موافق كام ًال مخالف بیشتر از بیشتر از موافق موافق مخالف

٤٩. بخشندگي بخش مهمي از معنويت من است. 1 2 3 4 5 6

٥٠. من خواهان هدايت معنوي در تصميم گيريهاي زندگی روزانه ام هستم. 1 2 3 4 5 6

٥١. امور معنوی بخش بزرگی از زندگی من را تشکیل می دهد. 1 2 3 4 5 6

٥٢. من هميشه احساس نزديكي به خدا يا يك "نيروي برتر" در عبادات، عبادات 1 2 3 4 5 6 گروهي و يا در لحظات خاص زندگي روزانه، ميكنم.

٥٣. ديدگاههاي معنوي من در زندگیم موثر بوده است. 1 2 3 4 5 6

٥٤. اهمیت امورمعنوی درزندگی من بخصوص به این دلیل است که به بسیاری 1 2 3 4 5 6 ازسواالت من درخصوص مفهوم زندگی پاسخ می دهد.

164

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