UNDERSTANDING FAMILIES’/SURROGATE DECISION MAKERS’ … · 2019-02-17 · Goal Attainment Theory...
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UNDERSTANDING FAMILIES’/SURROGATE DECISION MAKERS’ EXPERIENCE OF DECISION MAKING FOR CRITICALLY ILL PATIENTS IN SAUDI ARABIA BY OMAIMAH ALI OMAR QADHI BSN, King Saud University, Nursing Collage, 2003 MSN, University of California San Francisco, School of Nursing, 2010 DISSERTATION Submitted in partial fulfillment of the requirements for The degree of Doctor of Philosophy in Nursing In the Graduate School of Binghamton University State University of New York 2018
Transcript of UNDERSTANDING FAMILIES’/SURROGATE DECISION MAKERS’ … · 2019-02-17 · Goal Attainment Theory...
UNDERSTANDING FAMILIES’/SURROGATE DECISION MAKERS’ EXPERIENCE OF DECISION MAKING FOR CRITICALLY ILL PATIENTS IN SAUDI ARABIA
BY
OMAIMAH ALI OMAR QADHI
BSN, King Saud University, Nursing Collage, 2003 MSN, University of California San Francisco, School of Nursing, 2010
DISSERTATION
Submitted in partial fulfillment of the requirements for The degree of Doctor of Philosophy in Nursing
In the Graduate School of Binghamton University
State University of New York 2018
© Copyright by Omaimah Ali Omar Qadhi 2018
All Rights Reserved
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Accepted in partial fulfillment of the requirements for The degree of Doctor of Philosophy in Nursing
In the Graduate School of Binghamton University
State University of New York 2018
November 29th, 2018
Carolyn Pierce, Chair Department of Nursing, Binghamton University
May Ann Swain, Faculty Advisor Department of Nursing, Binghamton University
Ann Fronczek, Faculty Advisor
Department of Nursing, Binghamton University
Gary James, Outside Examiner Department of Biomedical Anthropology, Binghamton University
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Abstract
Critical illness not only affects patients, but also may negatively impact the families and
people who are responsible to make decisions for those patients. Making decision can be
challenging for people when it is for someone else who is critically ill. This study explores the
decision-making experience for family or a surrogate decision maker for critically ill patients in
Saudi Arabia. This project also tested the presence or absence of regret after making serious
decisions about a medical treatment for another individual. Goal Attainment Theory was used to
guide this study. The concepts of the Interpersonal Interacting Systems were used to represent
the interaction between the decision makers and the care providers for setting goals and making
decisions. A descriptive convergent mixed methods study design was employed, including
qualitative and quantitative data from four different hospitals in Saudi Arabia representing three
different cities. Qualitative and quantitative data were collected simultaneously. First the semi-
structured interviews were administered followed by the administration of the Decision Regret
Scale. For the purpose of this study, an appropriate permission was obtained, and the scale was
translated into Arabic following specific guidelines provided by the scale developer. The
interviews were audiotaped, transcribed then translated into English. Common and related
expressions were coded and categorized resulted several themes that emerged. The researcher
coded the entire transcripts then two different persons coded the transcripts independently and
reviewed them with the researcher to ensure the inter-relater reliability. Another Arabic
researcher reviewed the transcripts and performed back translation of several random interviews.
Themes were thoroughly explained, and several examples were provided. Results revealed that
only two males verbalized and demonstrated regret on the scale. The remaining of the participant
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who demonstrated no or mild regret on the scale, had various level of education and monthly
income and varied in their relationship with the patients including parents, spouses, siblings and
others. Further studies needed for understanding the key factors in regret after decision that are
made for critically ill individuals. Further studies needed for understanding the key factors in
regret after decision that are made for critically ill individuals in Saudi Arabia
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This dissertation work is dedicated to my mother Fatemah Al Hussah who has been constantly
supportive and encouraging during the challenges of my long study abroad graduate education
and life. I am truly thankful for all your prayers and for having you in my life. This work is also
dedicated to my two sisters, Aeshah Alnagwi and Hasnah Kadi who have always loved me
unconditionally and whose good examples have taught me to work hard for the things that I
aspire to achieve.
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Acknowledgments
I would like to express my sincere appreciation to my committee chair Professor Carolyn
Pierce, who introduced me to research with her knowledge and the attitude of a genius: she
constantly supported me during the research journey. Without her guidance and persistent help
this dissertation would not have been possible. I would also thank my committee members who
gave me from their time in helping me to complete this work. In addition, I would like to thank
Professor Pamela Fahs for who enthusiasm and continuous support during my graduate education
had lasting effect.
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Table of Contents
List of Tables .................................................................................................................................. xi
List of Figures ................................................................................................................................ xii
List of Abbreviations .................................................................................................................... xiii
Chapter I .......................................................................................................................................... 1
Introduction .................................................................................................................................. 1
Problem Statement ........................................................................................................................... 6
Significance of The Study ................................................................................................................ 6
Nature of The Study ......................................................................................................................... 7
Research Questions .......................................................................................................................... 9
Conceptual Definitions .............................................................................................................. 13
Summary ........................................................................................................................................ 14
Chapter II ....................................................................................................................................... 16
Literature Review........................................................................................................................... 16
Introduction ................................................................................................................................ 16
Goal Attainment Theory ................................................................................................................ 19
Summary ........................................................................................................................................ 43
Chapter III ...................................................................................................................................... 45
Methodology .................................................................................................................................. 45
Introduction ................................................................................................................................ 45
Research Design ............................................................................................................................ 46
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Rationale for Research ............................................................................................................... 46
Subjects ...................................................................................................................................... 46
Data Collection Methods ............................................................................................................... 47
Summary ........................................................................................................................................ 66
Chapter IV ...................................................................................................................................... 67
Data Analysis ................................................................................................................................. 67
Introduction ................................................................................................................................ 67
Sample ........................................................................................................................................... 67
Demographic Data Analysis ...................................................................................................... 68
Qualitative Data Analysis .......................................................................................................... 76
Quantitative Data Analysis ........................................................................................................ 93
Triangulation .................................................................................................................................. 95
Summary ........................................................................................................................................ 95
Chapter V ....................................................................................................................................... 97
Discussions and Recommendations ............................................................................................... 97
Introduction ................................................................................................................................ 97
Emergent Themes .......................................................................................................................... 98
Reflection of Theory ................................................................................................................ 109
Goodness of The Study ................................................................................................................ 112
Recommendations .................................................................................................................... 113
Research ............................................................................................................................... 113
Practice ................................................................................................................................. 114
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Policy ................................................................................................................................... 116
Limitations ............................................................................................................................... 117
Conclusion ................................................................................................................................... 118
Appendix A: Letter from SMoH To Health Affairs in Medina Region ....................................... 121
Appendix B: Letter from SMoH To Health Affairs in Jeddah Region ........................................ 122
Appendix C: Letter from SMoH To King Fahad Medical City IRB ........................................... 123
Appendix D: Letter from SMoH To King Saud Medical City IRB ............................................. 124
Appendix E: IRB Letter from King Fahad Medical City for all sites .......................................... 125
Appendix F: IRB Letter from King Fahad Hospital Medina ....................................................... 126
Appendix G: IRB Letter from King Fahad Hospital Jeddah ........................................................ 127
Appendix H: IRB Letter from King Saud Medical City .............................................................. 128
Appendix I: IRB From Binghamton University .......................................................................... 129
Appendix J: Decision Regret Scale English ................................................................................ 130
Appendix K: Permission for Decision Regret Scale Use & Translation ..................................... 133
Appendix L: Decision Regret Scale Arabic ................................................................................. 134
Appendix M: Translator's Credentials ......................................................................................... 137
Appendix N: Amendment 1 ......................................................................................................... 138
Appendix O: Amendment 2 ......................................................................................................... 139
Appendix P: Amendment 3 .......................................................................................................... 140
Appendix Q: Amendment 4 ......................................................................................................... 141
Appendix R: Amendment 5 ......................................................................................................... 142
Appendix S:Amendment 6 ........................................................................................................... 143
Appendix T: Permission from Imogene King .............................................................................. 144
References .................................................................................................................................... 145
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List of Tables
Table 1. Demographic characteristics of the sample ..................................................................... 69
Table 2. Time Elapsed from Making the Decisions ....................................................................... 71
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List of Figures
Figure 1. Conceptual Framework of Human Interacting Systems ................................................. 10
Figure 2. Income & ADRS ............................................................................................................ 70
Figure 3. Age & ADRS .................................................................................................................. 71
Figure 4. Gender & ADRS ............................................................................................................. 73
Figure 5. Education & ADRS ........................................................................................................ 73
Figure 6. Average decision regret score......................................................................................... 92
Figure 7. Average decision regret score......................................................................................... 93
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List of Abbreviations
ADRS. Average decision regret score ......................... xiii, xiv, 57, 65, 73, 74, 76, 78, 98, 105, 111
DRS. Decision Regret Scale ...... xiv, 56, 62, 65, 68, 69, 77, 95, 118, 120, 122, 132, 133, 134, 135, 136, 137, 138, 139
GAT. Gaol Attainment Theory ............................................... xiv, 11, 14, 23, 24, 25, 26, 27, 28, 45
ICU. Intensive Care Unit xiv, 3, 4, 5, 7, 9, 10, 14, 16, 18, 29, 32, 33, 35, 36, 37, 40, 47, 48, 50, 56, 59, 60, 61, 62, 70, 84, 86, 87, 88, 91, 94, 102, 104, 108, 109, 110, 113, 114, 148, 149, 150, 151, 156
IRB. Inistitutional Research Board .................................. x, xi, xiv, 49, 56, 127, 128, 129, 130, 131
KFHJ. King Fahad Hospital Jeddah .................................................................... xiv, 49, 62, 74, 129
KFHM. King Fahad Hospital Medina................................................................. xiv, 49, 61, 74, 128
KFMC. King Fahad Medical City .................................................................... xiv, 59, 97, 125, 127
KSMC. King Saud Medical City ....................................................................... xv, 60, 97, 126, 130
MBS. Mohammed bin Sallamn .............................................................................................. xv, 119
MDM. Medical decision making ............................................................................................. xv, 16
PBUH. Peace be upon him ..................................................................................... xv, 102, 103, 111
PTSD. Post Traumatic Stress Disorder ........................................................................ xv, 4, 5, 7, 37
SCHS. Saudi Commission for Health Specialities ................................................................. xv, 119
SMoH. Saudi Ministry of Helath ......................................................... x, xv, 49, 123, 124, 125, 126
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Chapter I
Introduction
Critical illness (CI) is a devastating condition and usually results in serious consequences,
including physical and cognitive impairments (Brummel et al., 2012; Granja, Amaro, Dias, &
Costa-Pereira, 2012; Jackson et al., 2012). With the advancement of the medical services
worldwide, the number of survivors of CI is consistently increasing (Brummel et al., 2012;
Jackson et al., 2012; Salisbury, Merriweather, & Walsh, 2010). The survival rate of chronically
critically ill people is approximating 89% upon hospital discharge after a CI (Brummel et al.,
2012; Elliott et al., 2011; Jackson et al., 2012; Trees, Smith, & Hockert, 2013; Williams & Leslie,
2011). Critical illness often leads to physical and/or cognitive impairments. These physical
complications are characterized by weakness and loss of muscle strength. Critical illness can
cause weakness of the respiratory muscles and can prolong the stay in the Intensive Care Unit
(ICU) (Burtin et al., 2009; Trees et al., 2013). Extended stays in the ICU might relate to serious
disabling complications, which may persist from months to years after discharge (Burtin et al.,
2009; Nordon-Craft, Moss, Quan, & Schenkman, 2012; Trees et al., 2013). A prolonged stay in
the ICU may contribute to the development of severe physical complications, referred to as
Intensive Care Unit Acquired Weakness (ICU-AW) that can affect cognitive, metabolic,
cardiopulmonary, genitourinary, and other body systems (Brummel et al., 2012; Elliott et al.,
2011; Nordon-Craft et al., 2012). The recovery from the neuromuscular dysfunction after critical
illness may be incomplete and take longer than the recovery of other body systems (Brummel et
al., 2012; Nordon-Craft et al., 2012; Williams & Leslie, 2011). In addition, the use of sedative
agents may disguise or delay the diagnosis of ICUAW (Nordon-Craft et al., 2012).
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The psychological impairments resulting from critical illness can be manifested as
anxiety, depression, post traumatic syndrome disorders (PTSD) and cognitive dysfunction.
Cognitive improvement tends not to recover over time and may become persistent (Rattray,
2014). Delirious patients manifest altered mental status, irrational thinking and short attention
span. Long–term cognitive impairment (LTCI) is a condition described by serious and persistent
cognitive changes. This may range from memory loss to a complete and incapacitating condition
(Brummel et al., 2012). Incapacitated people in the ICU will often need representatives to make
their treatment-related decisions while they are in the ICU. The representation of those critically
ill individuals can be through family members or legally delegated surrogate decision makers
(Carlson, Spain, Muhtadie, McDade-Montez, & Macia, 2015; Frivold, Slettebø, Heyland, & Dale,
2018).
The main purpose of a decision is to achieve a desired outcome, and if an anticipated or
preferred result is not experienced, then regret after decision may occur (Connolly & Reb, 2005).
Adding to the stress experienced by the family or the surrogate decision maker, in many
situations, there is lack of appropriate support from the critical care personnel to decision makers
during these stressful situations (Azoulay et al., 2005). This perceived lack of support may alter
that person’s decision-making process and eventually lead to regret after decision.
Because critical care has expanded exponentially in Saudi Arabia over the last few years,
there remains concern that people who are responsible for making decisions about treatment for
critically individuals are given inadequate information and support. Overlooking decision
makers’ concerns may result in psychological and other problems, ultimately leading to regret
after decision.
While there are no data from the Saudi critical care settings, it is known that about 80%
of adult Americans aged 40 years and older had been faced with the situation of the necessity to
make critical health-related decisions in the last two years (Becerra Perez et al., 2016).
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Family-centered care focuses on the emotional and information needs of the patient’s
family to lower the risk of emotional complications (Azoulay et al., 2005). Insufficient or a total
lack of emotional support may negatively impact the decision-making experience (Azoulay et al.,
2005; Becerra Pérez et al., 2016). One American study noted that PTSD was found in 50% of
families who were involved in daily patient care and 80% among those who were participating in
end-of-life decisions. Moreover, anxiety and depression were prevalent among 30% of these
families (Azoulay et al., 2005; Miller, Morris, Files, Gower, & Young, 2016). Needs-based
education for ICU patients’ relatives demonstrated higher satisfaction and lower emotional
distress (Bailey, Sabbagh, Loiselle, Boileau, & McVey, 2010). This study will allow the
family/surrogate decision makers to express their feelings, describe the process of making
decisions, and evaluate and verbalize any regret following this experience.
The family bonds in Arabic communities are unusually strong when compared to those of
western societies; Muslims are encouraged to visit sick people and to ask about their health status
(Halligan, 2006; Mobeireek, Al-Kassimi, Al-Majid, & Al-Shimemry, 1996). The Muslim family
is believed to be the basic source of caring in general (Al-Hassan & Hweidi, 2004; Halligan,
2006). This family linkage enables the close family to help decide appropriate healthcare
decisions for the patient (Mobeireek et al., 1996). Surrogate decision makers are legally
authorized people who make medical decisions on the behalf of the patient. Family visiting and
the various forms of support including physical, emotional and social are vital cardinal signs of
being together in the close-knit family (Halligan, 2006; Vaismoradi et al., 2015). However,
healthcare providers often fail to pay attention to the family’s needs and concerns because of the
focus on the patient’s conditions and needs (Al-Mutair, Plummer, Clerehan, & O’Brien, 2014).
Caring for the family and surrogate decision makers of the critically ill patients is crucial
for the care of the patient and provides an important resource in the care plan. Ignoring the
family’s concerns may jeopardize the patient’s response to treatment (Al-Mutair et al., 2014).
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Effective communication between physicians, patients and their families is crucial for better
outcomes for the patient, the care providers and the overall healthcare system (Mobeireek et al.,
1996).
Meeting a family’s needs has been shown to improve satisfaction and lower the incidence
of anxiety and legal liability for the providers and the healthcare system overall (Al-Hassan &
Hweidi, 2004; Al-Mutair et al., 2014; Fassier, Lautrette, Ciroldi, & Azoulay, 2005; Miller,
Morris, Files, Gower, & Young, 2016; Mobeireek et al., 1996). Ignoring the family’s concerns
can cause many psychological problems for the family such as anxiety, uncertainty and fear of
losing a critically ill relative (Al‐Mutair, Plummer, O’Brien, & Clerehan, 2013; Azoulay et al.,
2005; Miller et al., 2016). Allah is the only one knows the time, the condition and the place of
death for everyone; and b) there is another life after death (Halligan, 2006). In Islam, death is
part of a covenant and the end of life is merely controlled and timed by the creator, Allah
(Halligan, 2006). In Islam, attempts to rush a patient’s death or hold back supportive care, such
as hydration and nutrition, are forbidden (Halligan, 2006).
In spite of the perceived need to facilitate holistic care and to increase quality of
communications, considerable barriers remain for family involvement in the care of the patient
because of such issues as hospital policies and procedures (Al-Mutair et al., 2014). However,
many providers support the need for progress in this area because families report that involving
them in the care of their sick relative makes them feel that they are helpful and positively
involved in their loved one’s care (Al-Mutair et al., 2014; Al-Mutair, Plummer, Paul O’Brien, &
Clerehan, 2014; AlHaqwi et al., 2015; Mobeireek et al., 2008; Mobeireek et al., 1996).
Family and Surrogate Decision Making
Critically ill individuals and, more specifically, those who are cognitively impaired are
usually unable to make decisions regarding their own health (Becerra Pérez et al., 2016; Booth,
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Doherty, Fairgrieve, & Kinsella, 2004; Redelmeier & Shafir, 1995). The use of imposing
technology and the need for rapid interventions in the ICU, requires multiple decision making.
Patients’ inability to make decisions, means that family members or a proxy must provide consent
for necessary interventions during the ICU stay (Azoulay, Kentish-Barnes, & Nelson, 2016; Bell,
1982; Booth et al., 2004).
Critical illness not only affects the patients physically and psychologically, but also may
negatively impact the families and people who are responsible to make decisions for those
patients. Family members and significant others may experience several psychological problems,
including fear of patient’s death, depression, anxiety, and post-traumatic stress disorder (PTSD)
(Adhikari, Fowler, Bhagwanjee, & Rubenfeld, 2010; Al-Hassan & Hweidi, 2004; Al-Mutair et
al., 2014; Azoulay et al., 2016; Carlson et al., 2015; Fassier et al., 2005). Furthermore, when
patients’ families felt comfortable with providing care to their members, they reported lower
levels of stress (Blom, Gustavsson, & Sundler, 2013). Psychological distress may lead to mental
distraction, which may then lead to failure to comprehend the information an individual receives
from healthcare providers (Hickman, Daly, Douglas et al., 2010; Hickman, Daly & Lee., 2012).
The inability to cognitively process the information regarding the patient’s diagnosis and
prognosis may influence how the family makes medical decisions for the patient (Hickman et al.,
2010). As a result of the psychological disturbance experienced by the decision makers, they
might demonstrate great demand for various types of support specially from the critical care
professionals.
Health care providers may overlook or not be aware of the needs of the critically ill
patients’ families and their surrogate decision makers (Al-Hassan & Hweidi, 2004; Al-Mutair et
al., 2013). Those decision makers may require psychological, social, informational or other types
of support. The need of social support may include the support from the family members or
friends so the patient’s representative who is responsible for making the treatment decisions will
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not blame themselves as being the primarily responsible. The psychological support may be
received from physicians, family, friends or others. Informational support is the demand for more
details regarding the situation and the treatment regime for their patients. Family’s needs may
include honest answers to their questions, access to visiting their patients and maintaining hope
regarding the patient’s recovery (Al-Mutair et al., 2013). Some decision makers may require
other types of support such as financial support. The lack of the appropriate support may lead to
the failure of making the most suitable decisions for the patient. This failure can result is blame
and regret after decisions.
Regret after decision is a state of feeling disappointed and thus blaming oneself regarding
the failure to make the appropriate decisions to achieve a desired outcome for the patient
(Hickman, Pinto, Lee et al., 2012; Steer et al., 2013). Regret after decision is always possible
when there is more than one option and only one can be selected. Most of the reported regret
after making medical decisions was related to poor and unsupportive communication, uncertainty,
and/ or feeling that better options may have been selected for better outcomes (Hickman, Daly,
Douglas, Clochesy, 2010; Hickman Daly, Douglas, Burant, 2012). The main purpose of a
decision is to achieve a desired outcome, and if an anticipated or preferred result is not
experienced, then regret may occur (Connolly & Reb, 2005).
Problem Statement
There is a lack of understanding about the phenomenon of being responsible for making
decisions for critically ill persons in the ICU in Saudi Arabia. There is also a need to further
understand how family or surrogate decision makers describe their experiences of making
decisions for their critically ill loved ones. As mentioned before, regret may occur if desired or
unexpected outcomes happened.
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Significance of The Study
While there are studies that focused on understanding the experience of a critically ill
individual in western countries, little is known about how these issues are experienced by ICU
patients and their families in Saudi Arabia. It is important that critical care providers understand
the phenomenon of critical illness and the decision-making process among the Saudi population.
Special consideration of the cultural differences for this population must be taken when making
comparisons with a western population. The ways that families of the Saudi critically ill patients
react to the situation may be impacted by various factors and may or may not differ from the
response of western people.
To the author’s knowledge, no studies exist that examine the experience of being
responsible for making the medical decisions on behalf of critically ill individuals in Saudi
Arabia. The current study will help in filling this gap by contributing to understand the decision-
making phenomenon in critical care settings in Saudi Arabia. Thus, we as healthcare providers
will provide more efficient care to these individuals. Understanding the decisions making process
experience in the critical care setting, may result in making more appropriate decisions that will
lead to better patient’s outcomes.
Nature of The Study
Design
A descriptive convergent parallel mixed method approach was employed, with the
qualitative and quantitative components conducted on the same day (Creswell, 2012; Driessnack,
Sousa, & Isabel Amélia, 2007; Polit, 2008). Family or surrogate decision makers of critically ill
persons in ICUs of the participating hospitals in Saudi Arabia were approached to participate.
The primary investigator used a semi-structured interview, each participant was asked to describe
his or her experience of being responsible for making serious decisions for critically ill
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individuals hospitalized in the ICU. Next, participants were provided the Arabic version of the
Decision Regret Scale (Brehaut et al., 2003) to assess the incidence of regret following decisions
they had made. Findings from both arms of the research were analyzed to discover vital
information to inform caregivers in the future.
Design Rationale
A convergent mixed methods descriptive study provided fundamental data about family
and surrogate decision makers’ attitudes towards their decision-making experiences. Mixed
methods here assisted in exploring and better understanding the phenomenon of decision making
by families or surrogate decision makers in Saudi Arabia in the critical care settings. Data
gathered for the qualitative component were augmented by an assessment of regret after decision,
utilizing a tool that has been widely used in various western settings.
Subjects
The target population was families and surrogate decision makers for critically ill patients
who were responsible to make medical decisions on behalf of these patients. A purposive,
convenience sample was drawn from families and surrogates of critically ill individuals in Saudi
Arabia at the four participating hospitals which were King Fahad Medical City in Riyadh, King
Saud Medical City in Riyadh, King Fahad Hospital in Jeddah and King Fahd Hospital in
Madinah. Participants from both genders, aged between 18 and 40 years, were potential subjects
for the study if they met the inclusion criteria as described below.
Data Collection
The data from the qualitative section were collected through the semi-structured
interview in Arabic that were directly translated and transcribed into English texts. Data from the
quantitative portion of the research were collected by the participants’ responses to the Arabic
version of the Decision Regret Scale.
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Research Questions
This study sought to investigate the following questions:
1. What is the experience of being responsible for making health-related decisions for
critically ill individuals in Saudi Arabia?
2. Do the family or surrogate decision makers for critically ill individuals verbalize regret of
their decisions after making them?
3. Do the family or the surrogate decision makers demonstrate regret on the Decision Regret
Scale?
Conceptual Framework
The conceptual model used to drive this study was Goal Attainment Theory (GAT)
developed by Imogene King. This conceptual model provides an inclusive view of three main
systems: a) personal or individual system; b) interpersonal or group system; and c) societal or
organizational system (Kazer & Fitzpatrick, 2012). The primary focus of King’s theory is the
general health status of an individual, group of individuals or their whole community (King,
1996). It emphasizes the idea that the nursing discipline focuses on individual’s health condition,
groups well-being in the community, and lastly the health of the whole society (King, 1992,
1997b; Sieloff & Frey, 2015). There are several objectives from this framework, such that it
identifies the vital principles for the nursing profession; it also functions as a base for structuring
new theories within the nursing realm and facilitates the testing of them. The Goal Attainment
Theory is useful in practice settings to guide the practitioners in providing the optimal care for
individuals, communities, and organizations (King, 1997a,1997b). It provides a basic conceptual
framework for conducting various nursing research for improving nursing practice.
The model may be used for improving nursing practice regardless of possible cultural
differences (King, 1996). Literature shows many uses and applications for this framework in
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various areas, including education, management, and practice. Hence, the Goal Attainment
Theory is suitable to be used for the current research project. The results may help in improving
the understanding of decision-making process for critically ill people in Saudi Arabia.
The three basic components of the conceptual framework interact with each other and
with the environment that surrounds them (King, 1981,1992, 1996). There are intrinsic and
extrinsic factors affecting the interaction process of the three systems. Intrinsic factors are inside
the individuals whereas, extrinsic factors are from the surroundings, and both factors are essential
for achieving the desired goals (King, 1997a). Decision-making is a crucial process within any
system, especially when the necessity for choosing the most appropriate pathway for achieving
desired outcomes exists (King, 1981). There are several concepts in the framework and from
these concepts propositions can be derived (King, 1997b): 1) perception; 2) communication; 3)
transaction; 4) self; 5) role; 6) growth and development; 7) stress and stressors; 8) coping; and 9)
time and space (Laben, Dodd, & Sneed, 1991; Temple & Fawdry, 1992).
Figure 1. Conceptual Framework of Human Interacting Systems
(King, 1981, used with permission)
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Based on King’s theoretical framework, the dynamic interacting systems was applied by
considering the patient as the primary contact, followed by the patient’s family or surrogate
decision makers as the next level of contact who play the patient’s role of making decisions.
Those decision makers interacted with the caregivers from the next level and initiated the
relationship between the family decision makers and the intensive care providers.
The Human Personal Interacting System, as described by King, represents the individual as an
open system who interacts with their surrounded environment and two or more persons to form
relationships (King, 1999). This system is composed of several concepts: a) perception; b) self;
c) growth and development; d) body image; e) time; f) personal space; and g) learning (King,
1992,1996,1997a,1999). Those concepts are believed to influence the decisions making process
for any person who has to make decisions to achieve desired goals. In the healthcare and
specifically critical care settings, serious decisions are often required to be made for the patients.
Those patients often require proxies to be responsible for making such decisions.
Serious health-related decisions may often need to be made in a limited timeframe. This
necessity may add more of a burden on decision makers which may prevent them from evaluating
the patient’s outcomes efficiently. Inability to assess the available options may result in decisions
regret or dissatisfaction with the resulted patient’s outcomes.
The Human Interpersonal Interacting Systems include: a) interaction; b) communication; c)
transaction; d) role and e) stress. The interaction will occur between persons to form small and
large groups and interact with one another (King, 1997a, 1997b). The Interpersonal System in the
current study will be described as the decision makers who interact with the ICU environment
which may impact them negatively or positively. In this study, the following concepts a)
interaction, b) transaction, c) communication, d) stress, e) decision making, f) growth and
development, g) perception, h) status, i) space and j) authority were considered to help explore
the families’ and surrogate decision makers’ experience with decision making. Interaction
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happens between nurses and their clients during applying the nursing process. A successful
interaction between the patient and the nurse results in building trust such that both set goals and
agree to the means of these objectives; this is what is called transaction (King, 1981, 1990, 2007).
This can be also applied in the relationship between the care provider and the decision makers.
The Human Social Interacting Systems are composed from several concepts, including:
organization, power, authority, status, control, decision making, and goal attainment (Carter &
Dufour, 1994; King, 1997, 2007; Laben et al., 1991). The following are examples for social
systems where there is interaction between the nurses and their clients: (1) belief or religious
systems, (2), family systems (3), work systems and (4) educational system. In the current study,
the social system will represent the ICU within the healthcare system.
Propositions of the GAT
The following propositions are adapted from those developed by King (1992, 1997a,
1999) and were used to guide this research.
1. If perceptional interaction accuracy is missing in intensive care providers-patient’s
family, transaction will not take place.
2. When interaction fails to occur between the intensive care providers by providing
inadequate information to the patient’s family, the goals for both will not be attained.
3. If the desired outcome was not achieved, a patient’s family may report dissatisfaction and
report regret after decision.
4. If interaction was not successful between patient’s family and the care providers, mistrust
can occur and negatively impact the provision of the optimal care to the patient.
5. If the expected outcomes by the healthcare provider were not consistent with the
expectation of the patient’s family, transaction did not exist.
6. If an interruption in the relationship between the healthcare providers and the patient’s
13
family occurs, this conflict will result in a stressful experience for both.
7. If unsupportive communication exists between experienced healthcare providers and the
patient’s family, both will be unable to set objectives or meet them.
Conceptual Definitions
There are several terms and expression that will be repeatedly used throughout this study
and need to be clearly defined to prevent confusion or misunderstanding. The concept of
decision-making and regret after decision is widely used in various fields. However, in the
medical and nursing field those concepts might represent a different meaning than the one
commonly used.
Family or Surrogate Decision Makers are described by (Hickman, Daly & Lee, 2012)
as people who consciously interact with the critical healthcare providers in order to make decision
on behalf of the incapacitated patients. In this study, family or surrogate decision makers are
going to be defined as a family member of the critically patients or legally authorized people who
were responsible of making medical decisions on the behalf of the critically ill patient to achieve
desired patient’s goals.
Goal Attainment: is a concept is driven from the King’s conceptual framework and it
denotes outcomes that measure the quality of the care provision (King, 1999). The main goals
here that need to be met are patient’s goals which are related to the patient’s health status and
outcomes. Briefly, the goal attainment is when patients’ health-related goals and outcomes are
met, and satisfaction occurs.
Medical Decision Making (MDM). Represents the action of choosing one option
related to medical treatments from a group of options after weighing each and assessing the
potential outcomes. The decision usually is taken for the sake of the patient’s health.
14
Regret after Decision. Regret is a state in which a person feels a sense of self-blame,
dissatisfaction, or sadness regarding the outcomes of a decision he or she made (Hickman, Pinto,
Lee et al., 2012; Hickman & Pinto, 2014).
Scope
This study sought to understand the phenomenon of being responsible of making health-
related decisions on behalf of critically ill individuals admitted in ICUs in Saudi Arabia. It also
tested how these Saudi family/surrogate decision makers describe their experience of the decision
process and whether they regret a health-related decision they have made for their loved ones in
the ICU.
Assumptions
The following assumptions were used to guide this research study:
1. The main goal in critical care service is providing optimal care for the patient to achieve
desired health outcomes;
2. Ignoring the needs of the family of a critically ill patient may impact the care for the
patient;
3. Admission to ICU typically happens with no warning or preparation and may negatively
impact psychological health of the patient’s family; and
4. The difficulties and hardship could prevent the family from logical thinking and
comprehension.
Summary
The main aim for this project is to contribute to the practical knowledge regarding critical
illness and the decision-making process of family members or surrogates in ICUs Saudi Arabia.
Understanding these phenomena will contribute to providing best care for the patients of the
15
intensive care unit and their families in Saudi Arabia. A thorough literature review will be
provided in Chapter II. The findings from this study will provide strong evidence for future
research in this area.
16
Chapter II: Literature Review
Introduction
This descriptive convergent mixed-methods study describes the experiences and
potentials for regret after decision experienced by the family decision makers (FDMs) resulting
from a health-related decision they have made during their loved ones’ stay in the ICU.
Approximately 297,000 individuals suffer from chronic critical illness (CCI) each year, and it is
anticipated to affect around 600,000 patients annually by 2020 (Hickman et al., 2012; Hickman &
Pinto., 2014). With improvement in mortality rates, these survivors will continue to suffer from
complications and may develop chronic critical illnesses. It is a condition characterized by
prolonged dependency on assistive ventilation, infections, electrolytes imbalance and/or urinary
complications (Brummel et al., 2012; Hickman et al., 2012). Common critical conditions that
may contribute to a prolonged stay in the ICU include sepsis, acute respiratory distress syndrome
(ARDS), and multiple organ failure (Brummel et al., 2012).
Critical Care in Saudi Arabia
Life in Saudi Arabia has changed in the last few decades from nomadic to a more
urbanized lifestyle (Mobeireek et al., 1996). Saudi Arabia is a transitioned Asian and religious
country (Mobeireek et al., 1996). This transition is reflected in a remarkable advancement in the
healthcare system and service quality (Sebai et al., 2001). Even though Muslims reside in many
countries, Saudi Arabia is known as the home country of Islam (Vaismoradi et al., 2015). Islam
is expressed by the Saudi people on an almost daily basis, and these practices are usually aligned
with instructions from two main sources of Islam, including the Holy Qur’an and the Sunnah,
17
which reports the sayings of prophet Mohammed peace be upon him (Al‐Hassan & Hweidi,
2004; Vaismoradi et al., 2015). In 1949, there were approximately 1,100 doctors working in less
than one hundred hospital (Sebai et al., 2001). Furthermore, the Saudi ARAMCO collaborated
with World Health Organization (WHO), which led to rapid growth in the clinical and medical
research centers in quality and quantity (Sebai et al., 2001).
By 1998, the number of doctors and nurses increased from 1,172 to 30,281 and from
3,261 to 6,470 respectively (Sebai et al., 2001). The oil wealth resulted in a remarkably rapid
transition from simple nomadic life with little organized medical care services into a modernized
life style with advanced medical technology (Mobeireek et al., 1996; Sebai et al., 2001). The
number of hospitals increased to 300, and 1700 primary healthcare centers were established
around the Kingdom (Sebai et al., 2001). In 2010, there were approximately 415 hospitals in
Saudi Arabia, but that number reached over 460 hospitals by 2015 (Sebai et al., 2001). Primary
health care was initially introduced in 1978 in Saudi Arabia. By 1983, primary care became the
basis for healthcare delivery and succeeded in immunizing more than 90% of the children in the
country to prevent infectious diseases (Sebai et al., 2001).
Concurrently, the critical care medicine is advancing due to the rapid evolving of the
medical technology (Almalki et al., 2011). Thus, the cost and the demand for well-trained and
specialized manpower to deliver this healthcare are also increasing (Arabi & Al Shimemeri, 2006;
Sebai et al., 2001). In Saudi Arabia, intensive care services are nearly comparable with the
intensive care services in western countries (Arabi & Shimemeri, 2006). In 2005, the Saudi
Arabian gross domestic product was US $13,019 per capita, and 5.3% of that amount is spent on
the healthcare system (Almalki, Fitzgerald, & Clark, 2011; Arabi & Shimemeri, 2006). Then, it
was US $22,935 per capita in 2007 and US $24,726 per capita in 2008 (Almalki et al., 2011).
Around 79% of the Saudi healthcare system expenses are the government’s responsibility and
people receive full free healthcare services (Arabi & Al Shimemeri, 2006; Sebai et al., 2001).
18
The remaining 21% of the expenditure is paid by private sector and other governmental agencies,
such as military services and the National Guard (Sebai et al., 2001). In 1998, the budget of the
Ministry of Health (MOH) was 12044 million SR equaling/equating to/converting to 3.2 billion
US Dollar, which is 6.2% of the national budget (Sebai et al., 2001). The average spending is
400 SR, which equals US $108 per capita annually in 1998 (Sebai et al., 2001). The structure,
function, and accommodation ability of ICUs vary between hospitals (Arabi & Al Shimemeri,
2006). Despite the multiplicity of the healthcare system delivery, there is no effective
communication and organization between those delivery systems (Almalki et al., 2011). Thus,
there is a noteworthy waste of the resources and duplication of efforts for care provision (Almalki
et al., 2011). As a result, in 2002, a royal decree was announced to create the Council Health
Services to overcome the miscommunication (Almalki et al., 2011). The main purpose of the
Council was to create policies for delivering an integrated and coordinated care for the population
of Saudi Arabia (Almalki et al., 2011). Yet, this council has not brought about noticeable
progress (Almalki et al., 2011).
The Saudi Ministry of Health (MoH) is the largest provider for the public healthcare in
Saudi, which provides free access to all citizens; however, the private sector provides a
considerable support to the Saudi healthcare system as well (Arabi & Al Shimemeri, 2006; Sebai
et al., 2001). The World Health Organization (WHO) ranked the Saudi healthcare system as 26th
among the 190 universal healthcare systems (Almalki et al., 2011). Despite the fact that the
healthcare system is accessible and free to people in Saudi Arabia, there is a long waiting list for
treatment (Almalki et al., 2011). This may result in people seeking care via the private healthcare
sector and their socioeconomic status can affect their access to the private sectors. Due to the
population increase and the demand for health care in all the three different care levels including
primary, secondary and tertiary, the MOH expenditure increased (Almalki et al., 2011).
19
In 1999, the Council of Cooperative Health Insurance was developed to meet the growing
demand for healthcare services and to ensure a good quality of care to the population (Almalki et
al., 2011). The Council’s primary function was to legalize healthcare insurance policies in Saudi
(Almalki et al., 2011). The implementation of the cooperative health insurance scheme was
planned over three steps: a) the insurance was applied to Saudis and non-Saudis who work in the
private sector, which is paid by their employers; b) the service is applied to Saudis and non-
Saudis who work in the government sector in which the government pays for the health cost for
those employees; and c) the service will be implemented for other groups, such as pilgrims
(Almalki et al., 2011). Policy makers and experts suggested that public hospitals should be
privatized for successful healthcare system reformation in Saudi Arabia (Almalki et al., 2011). In
2018, the Ministry of Health had officially announced its plan to privatize the health care system
in Saudi Arabia, as one of its plans for fulfilling and meeting the objectives of vision 2030.
The official spoken and written language in Saudi Arabia in the Intensive Care Unit
(ICU) and other departments in the hospitals is English. However, healthcare providers usually
use medical terminology that may not be easily understood, even for native English speakers
(Al‐Mutair et al., 2013; Almutairi, McCarthy, & Gardner, 2015; Azoulay et al., 2005). The
families’ comprehension of the information received by the care providers can be compromised
due to various factors such as the lack of medical background, speaking different language,
education level and the complexity of the information (Carlson et al., 2015). The communication
between the healthcare providers and patients and their families who only speak Arabic might be
negatively impacted due to this language barrier.
Goal Attainment Theory
Imogene King was born on January 30, 1923 in West Point, Iowa (Parker & Smith, 2015)
and earned a diploma in nursing from St. John’s Hospital School of Nursing in St Louis in 1945
20
(Parker & Smith, 2015; Pearson & Meleis, 1985; Sieloff & Frey, 2015). She completed her
Bachelor of science in nursing education in 1948 while she was working as a staff nurse playing
different roles (Kazer & Fitzpatrick, 2006; Parker & Smith, 2015; Pearson & Meleis, 1985).
Eleven years later in 1957, she earned her master’s degree in nursing science from St. Louis
University (Parker & Smith, 2015; Pearson & Meleis, 1985). From 1947 to 1958, King served as
an instructor in medical-surgical nursing and worked as an assistant director at the School of
Nursing at St. John’s Hospital (Parker & Smith, 2015). King then pursued a doctoral degree in
education from the Teachers College at Columbia University in 1961 (Fitzpatrick & Kazer, 2006;
Parker & Smith, 2015; Pearson & Meleis, 1985). From 1961 to 1966, she served as an associate
and assistant professor in nursing at Loyola University (Parker & Smith, 2015). During her work
at Loyola University, she developed a master’s degree program in nursing. During the following
two years from 1966 and 1968, King was the Assistant Chief of Research at the Nursing Division
of the United States Department of Health. She worked as the director of the nursing school at
Ohio State University in Columbus 1968 to 1972 (Kazer & Fitzpatrick, 2006; Parker & Smith,
2015). She also received several honors and awards from different organizations and agencies
(Fitzpatrick & Wallace, 2006).
King’s Conceptual Human Interacting Systems Framework
This framework composes of Personal Human Interacting Systems, Interpersonal Human
Interacting Systems and Social Human Interacting Systems (figure-1). Also, each system
includes the essential concepts for understanding the interactions in each system and between the
three systems. The basic assumptions from this theory are based on interaction and relationships
between individuals that take place through three dynamic interrelated systems: personal,
interpersonal, and social systems. There is an inconsistency in the concepts provided by King,
such that in some articles there are ten concepts mentioned and others report even more. The ten
concepts include 1) perception; 2) communication; 3) interaction; 4) transaction; 5) self; 6) role;
21
7) growth and development; 8) coping stress; 9) time; and 10) space. Some authors considered
stress and coping as separate concepts and others combined them. Most of the concepts were
conceptually defined, but some concepts, such as satisfaction and effective nursing care, were
not. The term “concepts” refers to an individual’s abstraction of the surrounding environment,
and this knowledge helps the person to understand other people’s reactions and interactions.
The GAT (King, 1999) was derived from the dynamic systems conceptual framework.
King was interested in finding how to better understand the phenomenon of nursing and what
differentiates this discipline from others (Fitzpatrick & Kazer, 2006, 2012; Parker & Smith,
2015). She was also interested in exploring the decisions-making process that nurses experience
while providing daily nursing care to their patients (Parker & Smith, 2015; Pearson & Meleis,
1985). King focused on human acts and tried to describe the essence of the goals and
interactional patterns that master the relationship between the nurses and their patients (Pearson
& Meleis, 1985).
King’s theory considers nursing practice as an interactional process between two
individuals who are engaged in human acts (King, 1996, 1997a). The model developed gradually
through a series of King’s work starting from her beliefs that nursing care may be provided by
applying a framework that constitutes of a mixture of ideas which became the book Toward a
Theory for Nursing published in 1971 (Parker & Smith, 2015; Pearson & Meleis, 1985). In that
book, she argued that there was a need for a systematic representation of nursing in order to
develop a science of everyday nursing art (Parker & Smith, 2015). Later, she continued in her
work for developing nursing theory and changed the previous title to A Theory for Nursing in
1981 (Parker & Smith, 2015; Pearson & Meleis, 1985). During the early 1990s, King used her
conceptual dynamic interacting systems to develop the Goal Attainment Theory (Parker & Smith,
2015; Pearson & Meleis, 1985).
22
King’s Human Interaction Systems illustrates process between individuals to reset their
desired goals and all the means for meeting those goals (King, 1994; Parker & Smith, 2015;
Sieloff & Frey, 2015). This interaction could happen between two or more people in various
situations. For nurses, this interaction happens between them and their patients or their families
to set the desired patient’s outcomes.
The literature demonstrates a wide utility of King’s model in nursing research also, and
there is increasing interest in further applying it in nursing practice today (Parker & Smith, 2015).
King’s Theory was developed in the early 1960s, is still a strong guide for many aspects in the
nursing practice (Williams, 2001). In 1997, Books and colleagues used the framework to
originate a perceptual awareness theory (Parker & Smith, 2015). Their focus was on developing
the concepts of action and judgment as basic components in the personal system (Parker & Smith,
2015). Several middle-range theories focusing on families were derived focusing on
interpersonal systems. Regarding the interpersonal systems of the dynamic systems, the theorist
Doornbos, applied the GAT in her Family Health Theory. Wicks and colleagues (2007) tested
their middle range theory about a wider understanding of family health in the context of chronic
obstructive pulmonary disorders. They discussed the health of families who have adults with
determined mental health issues (Parker & Smith, 2015). In the context of the social systems of
the dynamic systems, Sieloff & Frey, 2015 developed the Theory of Group Power in
organizations to assist in explaining the power of groups within an organization. Husband (1988)
applied King’s theory for providing nursing care of diabetic adults. The paper discussed that
King’s theory was an appropriate and useful framework for the nursing care of the adults with
diabetes mellitus using the nursing process. It was also argued that nurses often use the nursing
process when providing care to their patients (Husband, 1988). Williams (2001) applied King’s
theory in emergency department and rural nursing care. She stated that King’s theory was not
applicable as whole, but several concepts were applicable to rural and emergency nursing. Some
23
of those applicable concepts included communication; growth and development; and time and
interaction. The study revealed that good communication between the rural nurse and her clients
results in positive interaction. In 1990, Byme-Coker and colleagues described how they involved
nurses in a categorization system to connect King’s concepts with nursing diagnosis.
Furthermore, Rooke conducted a study in Sweden to describe the concept of space in King’s
theory and proved the appropriateness of applying theory in the care of geriatric patient in
hospital settings (King, 1996, 1997a, 1997b).
There are many examples of the utilization and application of King’s theoretical
framework in the literature. It has been used in clinical practice, management, education and
research (King, 1992, 1997a, 1999). The goal attainment theory is a parsimonious but
teleological one because it defined interaction and transaction. Goal attainment reflects the
interaction and transaction process between the three main systems to provide the effective
nursing care and to achieve desired objectives (King, 1992). The nursing process includes
assessment, planning, intervention, diagnosis and evaluation. King suggested that when applying
this process, the nurse uses perception, communication, and interaction concepts to perform
proper judgments about the patient’s health (King, 1997a).
The GAT is useful for educational purposes, as well as in clinical practice. It is also
useful in evaluating active, autonomous, collaborative, and individual relationships with nurses
(King, 1992). It is good for long-term nurse-patient relationships to evaluate satisfaction, goal
attainment and effective care (King, 1997b). In the education field, the model could be used to
create curricula for various nursing programs. The model is fundamental in undergraduate
nursing programs (King, 1992). It is also useful for continuing education and considered as
guidelines for implementing it in education settings. It is compatible with the value and beliefs
about nursing humanity, autonomy, patient advocacy, self-reliance and planning. The focus of
the theory is mutual goal setting and attainment as the interaction between individuals and
24
helping them to become sufficiently healthy to function in order meet their predetermined
objectives. The GAT is also valuable for nursing administration when modifying the nursing
practice to improve the patient’s outcomes (Caceres, 2015).
The GAT reflects individuals as open systems who interact with the environment and
with each other to form small and large groups and this is the interpersonal system (Caceres,
2015; King, 1992). The concepts in the interpersonal system include: a) role; b) human
interaction; c) coping; d) transaction; e) stress; and f) coping (Caceres, 2015). The small and
large groups interact with the surrounding environment and society to form the institutional or
social system and form organizations, such as religious or healthcare systems (Caceres, 2015).
The social system includes several concepts, which are organization, power, authority and status,
goal attainment, decision-making, and control. The result of the interaction between those three
systems provoked King to develop the Goal Attainment Theory. This model plays various
functions as a basis for developing other nursing theoretical and conceptual frameworks to
contribute to the understanding of the nursing phenomenon. It also has served as a guideline for
educational programs. The GAT was developed by Imogene King in the 1960s, may be useful to
better understand regret after decision.
Decision-making is a vital concept to any system when there is a need to weigh the
available options to achieve desired outcomes. Decision-making process is one of the concepts in
critical care field and the care providers always face a challenge of the difficulty in
communicating with incapacitated patients. The providers are often required to communicate
with the patient families to make decisions on behalf of the patients. The theory mainly focuses
on the interaction between the nurses and their patients and the process of making mutual
decisions to achieve mutual desired goals.
King (1992, 1996, 1997a, 1999) emphasized the importance of empowering the patient
by involving him or her in the process of setting goals. The Goal Attainment Theory can be used
25
in the interaction and relationship between the intensive care providers and the families of the
patients. They collaborate to set goals and set the implementation strategies to meet these
planned goals. For the current research study families and surrogate decision makers are the
representatives for the incapacitated critically ill patients, and the following concepts represent
the basic concepts of the study.
Assumptions of the GAT. The theory provides clear assumptions focusing on the perceptions
of the patients and the nurses. The perception impacts the interaction process between the nurse
and the patient. The following are the assumptions suggested by King:
1. The key focus of nursing care is the interaction between human beings and their
environment (Champion, 2003; Frey, Sieloff, & Norris, 2002; Temple & Fawdry, 1992;
Tritsch, 1998);
2. People by nature are societal, emotional, cogent, responsive, perceiving, controlling
purposeful, action-oriented and time-oriented creatures (King, 2007);
3. Patients have the full right to be involved in their care plan and actively participate in
making decisions regarding their health and that could influence their lives, they also
have the right to accept or reject the provided care (King, 1992, 1997b, 1999);
4. The interactional process between the nurse and the patient is a dynamic process that is
affected by the perceptions of both the patients and the care provider (King, 2007);
5. People are spiritual, social, sentient, rational, reacting, controlling and perceiving (Kazer
& Fitzpatrick, 2012; King, 1997a, 1999);
6. Care providers are expected to take the responsibility of informing the patient about all
the information regarding their health and treatment options (King, 1999);
7. The transaction between people is believed as dynamic concept that is influenced by
internal and external factors (Frey et al., 2002; King, 1997a, 1999).
26
Application of GAT in this study. According to King, humans are open systems in a constant
interaction with their environment and with each other (Parker & Smith, 2015; Pearson & Meleis,
1985). In the nursing discipline, the primary focus is on humans’ interaction with their
environment and its goal is to assist people in maintaining stable health status. The theorist
considered the interaction to occur in three different levels personal, interpersonal and the social
in her conceptual dynamic system.
The Personal Interacting Systems represents the interaction between an individual and his
surrounding environment. This interaction will result in the response that the individual
expresses in the daily life. King considered several concepts as essential for this level, including
perception, self-growth, development, body-image, space and time. In this research the focus is
on the critically ill person who has a need for a surrogate to make decisions for him/her rather
than upon the personal systems of patient.
The interaction is supposed to take place between the critical care nurse and the family or
surrogate decision makers which represent the interpersonal interacting systems. The main
components of King’s middle range Goal Attainment Theory are found within the interpersonal
systems. The Interpersonal Systems explain that two or more strangers meet in a health
organization to help and be helped to maintain health status. In this research, the focus is on this
system, wherein the decision maker, either a family member or surrogate decision makers or
both, is interacting with the doctors, setting goals and working together to meet them. The core
concepts for this system are: communication, interaction, stress, transaction and role.
King identified the social systems as established conceptualized limits of peoples’ social
roles, practices and behaviors to maintain the interaction process between them. The systems also
result in developing people’s values that regulate their actions (Frey et al., 2002; King, 1990,
1997a; Parker & Smith, 2015). People in this system often have comparable objectives and
desires and values (King, 1996, 1997a; Meleis, 2011; Williams, 2001). In this study, the Social
27
Systems apply in the interaction and transaction that occur between the critical care personnel and
the decision makers that happen with the healthcare organization.
Concepts
Several concepts from King’s Theory of Goal Attainment are important to understanding
her theory and are discussed below.
Perception. King (2007) considered perception as the main component in her framework
and wrote that the nurse’s perception and the perception of his or her client will affect the way
they interact with each other (Frey et al., 2002; King, 1990, 1997a; Meleis, 2011). The study will
explore if perception of the decision maker about the care provided and the healthcare providers
may influence their ability of make serious decisions and readiness to interact and set desired
patient’s outcomes. Also, the purpose of this study is to identify if the insight of healthcare
providers, including the nurse, may impact how they involve the family in the patient care plan.
The family and the patient have the right to have the full knowledge about the health condition
(King, 2007). The knowledge is crucial for the perception of family decision makers, surrogate
decision makers and care providers about the patient’s condition and the available and
appropriate health-related options (Blom et al., 2013; Carlson et al., 2015; Frivold et al., 2018).
The current study assessed how perception influences the way they may interact with one
another. In the decision making for the critically ill patient, the perception of the patient’s family
and the perception of the intensive care personnel about the patient’s condition should be
consistent to effectively provide the best care for the patient during their stay in the ICU. The
perception of the family and surrogate decision makers and of the care providers must relatively
match to each other (King, 1999). This study helps us to understand if discrepancies between
these two perceptions may impact the patient’s, the family’s and the care provider’s evaluation
whether goals were attained. It also sheds light on how dissatisfaction with the goals attained or
the failure to attain the goals might result in regretting the decisions that made.
28
Transactions. These activities are unique due to the fact that each part of the process has
its own worldview based on the perception, time, and the space (Parker & Smith, 2015; Pearson
& Meleis, 1985). Transaction is a series of mutual interactions between people and the
environment that manifest in apparent behaviors in effort to meet goals or worthiness of the
participants of the process (Frey et al., 2002; King, 2007; Meleis, 2011). King mentioned that
transaction takes place when both patient and nurse collaborate in setting goals and agree to the
methods for achieving these objectives (Kazer & Fitzpatrick, 2012; Frey, Sieloff, & King, 1995;
King, 2007; Tritsch, 1998). They both should agree on the means on how to achieve those goals
by creating a suitable care plan (Frey et al., 1995; Frey et al., 2002; King, 1990, 1992; Sieloff &
Frey, 2015). The theory not only focuses on the relationship between the patient and the nurse
but also identified obstacles that disturb the goal attainment in the interdisciplinary collaborations
in healthcare organizations (King, 1997a, 2007).
Communication. Communication can be verbal or nonverbal; it is the main part in the
interaction process between two or more persons (King, 1990, 1992; Mobeireek et al., 1996;
Sieloff & Frey, 2015; Williams, 2001). The communication between the incapacitated patient’s
family and the critical care personnel is crucial for exchanging information and to better
understand the patient’s condition and his or her preferences (Adhikari et al., 2010; Darmon et al.,
2007; Hickman et al., 2012). Care providers are supposed to encourage the patient’s family to
ask questions and express their feelings and worriers regarding the patient’s health status.
Discussing options thoroughly may enable the family to weigh the expected outcomes of each of
the available choices (Al‐Mutair et al., 2013; Azoulay et al., 2016; Hickman et al., 2010).
Interruption in this communication process results in the failure of setting objectives properly and
may lead to goal achievement (Azoulay et al., 2016; Mobeireek et al., 1996). Communication
process is dynamic and does not stop after making the decision, communication continues in
order to evaluate the outcomes and discuss whether the patient’s goals were attained or not and
29
what were the main factors for that (Azoulay et al., 2016; Hickman et al., 2010). People
communicate between them in either verbal or nonverbal communication modes (Husband, 1988;
King, 1990; Mobeireek et al., 1996). Verbal and nonverbal communication forms can be
situational, perceptual, transactional, and irreversible as moving forward in time, personal and
dynamic (King, 1997a, 1997b; Pearson & Meleis, 1985; Sieloff & Frey, 2015; Williams, 2001).
The verbal communication takes place through verbal symbolic language that include written and
spoken to convey messages and ideas between one another (Azoulay et al., 2016; Mobeireek et
al., 1996). Nonverbal communication occurs in various forms as body language, gesture and eye
contact (Azoulay et al., 2016; Mobeireek et al., 1996).
In this research, both verbal and nonverbal communication happens between the decision
makers and the critical care doctors in the hospitals. This communication is a process of setting
various goals for the critically ill patients. These goals include preventing complications, treating
health issues or stabilizing the patients’ situation. Hypothetically, physicians and the decision
makers will agree on those goals and then agree on the implementation of interventions and
actions to the preset patients’ outcomes. However, this is not always expected, and in some
situations physicians and decision makers do not have mutual goals.
Human interaction. Individuals’ behavior can be defined as human acts and those acts
are considered as actions. Interaction is a reciprocal concept based on establishing a relationship
between people depending on their values and social beliefs. It is influenced by the peoples’
perceptions (King, 1999; Laben et al., 1991; Tritsch, 1998).
The interaction of the decision makers with the critical care physicians and nurses result
from the desire to meet patients’ goals as preventing complication, stabilizing critical situation or
curing health problems. The interaction between the doctors and the decision makers is guided
by their perceptions about each other and the values they gained from their environment and
society. As a result, the decision makers accept or reject the doctors’ suggestions and the doctors
30
approve or disapprove the decision maker’s response. Ethically, doctors should not influence the
decision makers and give them the right to accept or reject the options and suggestions they give
them regarding their critically ill patients.
Stress. It can be experienced by all human beings; however, its level unceasingly
changes according to various factors (King, 1981). Stress was defined by King as a response
from a person to stressors that could be another person, group of people, objects or events (Frey,
Sieloff, & Norris, 2002; Frey, Sieloff, & King, 1995; King, 1997a; Pearson & Meleis, 1985). It is
a dynamic condition in which people interact with their environment in order to maintain the
balance for their growth and development process (Frey et al., 1995; King, 1997a; Williams,
2001). It is an individual and subjective condition that can affect the person negatively or
positively. Some of King’s propositions stated that stress might happen in the interaction
between the nurse and the patient (Husband, 1988; King, 1992; Meleis, 2011; Sieloff & Frey,
2015). Some of the ICU patients are incapacitated, and their care providers frequently need
somebody to speak for them and make health-related decisions for them (Hickman et al., 2012).
In the ICU, all the interaction and transactions occur between the patients’ representatives or
decision makers and the healthcare providers. Carrying the responsibility of making health-
related decisions for a critically ill patient can be a devastating experience for the family and
surrogate decision makers (Hickman, Daly, Douglas et al., 2012a; Hickman, Daly & Lee, 2012;
Hickman et al., 2012). Stress can negatively impact the decision maker and may influence his or
her ability to comprehend the information he or she receives from the providers (Azoulay et al.,
2005). The decision maker experiences psychological stress due to the situation of having a
critically ill patient and being responsible for making serious health-related decisions for that
patient. The doctor may also experience stress of having to treat the patient and save his or her
life. As a result, of this stress, the decision makers and the physicians will interact to set patient’s
31
outcomes goals and work together to achieve those goals. This stress could be negative or
positive which may influence the interactions between them.
Role. Role is described as a group of expected behaviors learned from functioning in a
particular social system in a society (Frey et al., 1995; King, 1981, 1997a). The concept of role
includes a reciprocity relationship in which one person will be a giver in a given situation and the
other will be the receiver in that situation. A relationship develops between two or more people
who are functioning in two or more roles that one learned or gained from social elements. The
concept of role is composed from three components: a) set of expected behaviors, b) set of
procedures and rules and c) relationship of two or more individuals who interact with each other
for specified reasons in particular conditions. In the current study, the relationship as stated
before will occur between the care providers and the decision makers. Transaction will take place
when the expected role and performed role are compatible (Meleis, 2011). If critical care
physicians and nurses played the expected role by providing the ultimate care and adequate
information as perceived by the patient’s representatives, transaction will occur, and mutual goals
will be identified. Any conflict in the role may result in interrupting the relationship and failure
in transaction and stress may happen (King, 1990; Laben et al., 1991; Meleis, 2011; Pearson &
Meleis, 1985; Sieloff & Frey, 2015; Temple & Fawdry, 1992).
Time. Time is a universal concept that exists in all cultures and depends on individual’s
perception about it; it changes continuously from past to future (King, 1981; Laben et al., 1991).
Due to the severity of the illness, a patient must have received time sensitive care in the ICU.
The time pressure may impact the health-related decision-making process in which the patient’s
condition may be critical which necessitates a faster response for making health-related decisions.
Care providers also may not have sufficient time to explain the situation and may fail to provide
the family enough time to think and decide.
32
Health-Related Decision Making
The process of deciding on something is an explorative action guided by the importance
of the desired goals (Diecidue & Somasundaram, 2017; Somasundaram & Diecidue, 2017).
Decision making generally results from using a hypothetical viewpoint (Hickman, Daly & Lee.,
2012). The concept of decision making is always affected by the time of the decision, the
available information, and the participating people in the process (King, 1981). AlHaqwi and
colleagues (2015) mentioned that there are three different approaches in making medical
decisions. First, a paternalistic style is one in which physicians make the decision with minimal
input from the patient or their family. Second, a consumerist approach is characterized by when a
patient and/or his or her family take the complete responsibility in making decisions with no
physician involvement (AlHaqwi et al., 2015). Third, is an approach that is in the middle
between the two other approaches (AlHaqwi et al., 2015). It is called shared-decision, and in this
style, the physicians, patients and/or their families communicate and interact and exchange
information to make a final decision. Generally, in Saudi Arabia shared-decision making style is
the most preferred approach, followed by paternalistic and then consumerist (AlHaqwi et al.,
2015). In contrast, a consumerist approach is the most preferred in western countries (AlHaqwi
et al., 2015). Generally, health-related decisions are prone to mistakes due to the circumstance
around them, such as the complexity of the situation, the urgency and the uncertainty of the
situation (Redelmeier & Shafir, 1995). Failure to select the correct medical decision can be more
serious due to its direct effect on the patient’s health or life (Redelmeier & Shafir, 1995).
The presence of multiple alternatives intensifies the difficulty for making the correct
decisions (Redelmeier & Shafir, 1995) which may lead to regret regarding the chosen decision.
Regret after decision is an important patient-centered outcome reflecting cure, toxicity, and
quality of life (Steer et al., 2013).
33
Counterfactual reasoning is an intellectual processing thought to weigh the consequences
of the possible alternatives (Hickman, Daly & Lee, 2012). In general, during the thinking
process, the decision maker compares what took place or what would happen if a different
opinion was selected (Connolly & Reb, 2005). Basically, the decision makers may fail to
evaluate the advice and their opinion equally especially with a discrepancy between their
perspectives and the advice they receive (Yaniv & Kleinberger, 2000). In the critical care
settings, care providers are expected to provide the appropriate and adequate information for the
patient’s representative allowing them to evaluate the available options to enable them
successfully to make the most appropriate decisions (Carlson et al., 2015; Frivold et al., 2018).
Yet, in some cases this balance does not occur, and regret might be experienced (Bell, 1982;
Miller et al., 2016; Scott, Arslanian-Engoren, & Engoren, 2014).
Incapacitated individuals in the ICU usually need surrogate decision makers to make
health-related decisions on their behalf (AlHaqwi et al., 2015; Bell, 1982; Booth et al., 2004).
Effective and supportive communication is regarded as a key factor in delivering safe healthcare
to the patient (Almutairi et al., 2015). Due to the stressful nature of the critical care environment,
the communication between the critical care personnel and the patients’ families may not be as
effective as it is supposed to be (Carlson et al., 2015). The burden from the responsibility of
making decisions may impose stress and fear on the decision makers who may feel that they did
not make the appropriate decision. The feeling of failure of accomplishing the desired goal may
lead them to regret their actions.
In the medical environment, the patient’s cognitive capacity is crucial in making medical
decisions, yet most of critically patients are incapacitated and will require a family member to
decision maker to collaborate with the care providers to make the appropriate decisions for them.
Making decisions usually results from using a hypothetical viewpoint (Hickman et al., 2012).
Medical decisions compose of several options that are always associated with various levels of
34
harm and benefits (Scott et al., 2014). The current evidence supports the idea that, when people
must choose from group of options, they assess these available alternatives differently than when
dealing with a unique option (Redelmeier & Shafir, 1995). When some people are exposed to
multiple choices, they might tend to delay or avoid making the decision which may result in
failure to achieve the desired outcome (Redelmeier & Shafir, 1995). Insufficiency or the lack of
emotional support provoke and augment the decision-making experience (Scott et al., 2014).
Decision-making usually is associated with constant exposure to life threatening conditions and
elevated level of stress (Hickman et al., 2010; Hickman & Pinto, 2014). Culture can make the
decision-making process sensitive and almost individual for each patient (AlHaqwi et al., 2015).
Young people, females and individuals with high levels of education prefer an active role the
decision-making process (AlHaqwi et al., 2015). Saudi older adults and Saudi females preferred
less involvement in making decisions for a hospitalized relative (AlHaqwi et al., 2015) this
attitude may be due to social and cultural factors.
The onset of critical illness and the admission to the ICU often happens suddenly without
any warnings, thus leaving the patient’s representatives with considerable burden and emotional
distress (Al‐Mutair et al., 2013; Carlson et al., 2015; Frivold et al., 2018; Obeidat, Homish, &
Lally, 2013). Critical illness not only influences the patient’s health, but also affects the family
and the surrogates’ physical and mental health status. Emotional reassurance for the family is
believed to positively impact the patient and empowers the family (Al-Mutair et al., 2014;
Carlson et al., 2015; Hickman et al., 2010).
During chronic critical illness, patients are prone to multiple complications and the
complexity of this care makes the family in high demand for informational and emotional support
(Carlson et al., 2015; Frivold et al., 2018; Hickman et al., 2010). Adequate and truthful
information about the patient’s condition should support them in making the most proper
decisions for the sake of the patient (Al‐Hassan & Hweidi, 2004). In 2015, Carlson and
35
colleagues advocated that, even though families reported an overall high satisfaction, they also
reported a relatively lower satisfaction with communication as well as the informational and
emotional support provided to them from the ICU staff including nurses and physicians.
However, families reported a high satisfaction about the quality of care provided by the ICU
nurses and physicians (Frivold et al., 2018). Carlson and colleagues argued that reported lower
satisfaction about the emotional support may result from several factors. First, some families of
critically ill individuals may need higher level emotional support that other due to the situation
they experience (Carlson et al., 2015). Second, the experience of having a critically ill loved one
with and the necessity to make serious decisions along with other problems like medical
insurance issues may require more emotional support. Third, financial issues could lead to
significant stress of the patient’s family which make them in a need of more emotional support.
All those stressors may influence the intellectual processing of the information they receive
(Carlson et al., 2015).
Critical illness not only exposes the patients to physical and mental complications, it also
affects the families of the patients (Douglas, Daly, Kelley, O’Toole, & Montenegro, 2005).
Family-centered care is a concept that was developed to focus on the emotional and information
needs of the patient’s family to lower the risk of emotional complications (Al‐Hassan, Hweidi,
Al-Hassan, & Hweidi, 2004; Al‐Mutair et al., 2013; Al-Mutair et al., 2014). The condition of
post traumatic syndrome disorder (PTSD) is a common condition among families of ICU patients
three months after ICU experience (Azoulay et al., 2005). Due to the nature of critical illness,
there is a lot of vagueness, uncertainty and high demand for more detailed information that
exposes the family to a high level of stress (Al‐Mutair et al., 2013; Azoulay et al., 2016; Blom et
al., 2013). The uncertainty also contributes to a stressful environment for the patients’ families.
However, stress and other psychological burdens can distract the person from thinking in a
reasonable and appropriate manner. Failure to think appropriately may result in failure to make
36
the appropriate decision to get the most desired patient’s outcomes. People often face the
necessity for making decision for themselves or for someone else. Around 80% of American
adults at age of forty and older were exposed to making health-related decisions for themselves or
for someone else during the last two years (Becerra Perez, Menear, Brehaut, & Legare, 2016).
One of four of patients’ family members from neurology and medical critical care units
reported their dissatisfaction with the discordant and inadequate information provided to them
during the hospitalization (Hwang et al., 2014). The inability to comprehend the information and
the seriousness of the situation may aggravate to the emotional distress the family experience
(Carlson et al., 2015). Families demonstrated lowered anxiety and the became aware of the
situation when they received clear and adequate information about their patients (Wong,
Liamputtong, Koch, & Rawson, 2015). Satisfaction with of the care provided was positively
correlated with the provision of informational support (Bailey et al., 2010). Poor ineffective
communication was described as critical care staff speak rudely, provide discordant information
or speaking shortly (Wong et al., 2015). Communication was unsupportive if there was a
discrepancy in the information provided from the critical care providers (Wong et al., 2015).
The demand for adequate information and emotional reassurance are the highest priorities
for the families of critically ill patients (Al‐Mutair et al., 2013). If the care providers, especially
nurses, demonstrate a positive attitude towards family involvement in the care, it has been shown
to encourage the family to actively participate in the care (Al-Mutair et al., 2014). Treatment and
care of critical illness conditions might be controversial and ranges from conservative to more
advanced aggressive treatment (Mobeireek et al., 1996). Even though families always require
adequate and clear information about their patient’s condition, it was considerably important for
them to consider their emotional status when receive bad news from the care providers (Wong et
al., 2015).
37
Surrogate Decision Makers in Saudi Arabian
The family is considered as the fundamental component of the Saudi society and it often
extends beyond the immediate relatives and includes all the members of the individual’s tribe
(Al‐Hassan et al., 2004; Halligan, 2006). In western counties, the nuclear family is the more
common family style, whereas extended family style is the dominant form is Saudi Arabia even
with the transition and modernization of the life style there (Al‐Hassan & Hweidi, 2004). In
such cases, patient’s and family’s preferences function as primary guidance for achieving the
optimal desired outcomes (Mobeireek et al., 1996). In Jordan, visiting sick people is a favorable
behavior and is highly enforced by the culture and Saudi Arabia is a Muslim culture like Jordan.
The culture in such societies, is usually influenced by many factors particularly Islam and family
structure (Al‐Hassan & Hweidi, 2004).
The attitude of Saudi healthcare providers towards involving families in the patient’s care
was significantly different than the attitude of non-Saudis professionals (Al-Mutair et al., 2014).
Saudi supported the family contribution in the patient daily care more than non-Saudi, but there
was also difference in the attitudes among the providers, while physicians showed more
opposition to family involvement than nurses and respiratory therapists did (Al-Mutair et al.,
2014). Religion was found to impact the physician’s attitude in a way that many disregard the
patient’s autonomy such as the right to perform doctor-assisted suicide as euthanasia (Mobeireek
et al., 1996).
The healthcare provider’s attitude may vary due to many factors (Al-Mutair et al., 2014).
In a study asking physicians about their attitude in providing information to their patients and
their families, less than half of the participants in the survey were physicians from Riyadh, Jeddah
and Buraidah in Saudi Arabia; they reported that they always provided adequate information
about serious conditions to the patients and/or their families (Mobeireek et al., 1996).
38
Nursing staff, due to the lack of experience with such situations, may avoid talking with
the patients or the families about their illness and leave that to the consultants (Mobeireek et al.,
1996). Third-fourths of the general participating physicians in Saudi Arabia favor
communicating with the patients’ families rather than the patients themselves (Mobeireek et al.,
1996). More than half of the doctors and around half of Saudi patients demonstrated their
positive attitude of allowing the patients to know about their critical health condition rather than
informing their families about that (Mobeireek et al., 1996). Furthermore, more than half of the
participant in both study groups reported their opposition towards the families’ behavior of hiding
the illness information from the patient.
Perceptions Towards Critical Care Nurses in Saudi Arabia
The perception of critical care nurses’ role towards patients’ families has been considered
an important issue in western countries (Malliarou, Gerogianni, Babatsikou, Kotrotsiou, & Zyga,
2014); yet data are still sparse about how families perceive the role of critical care nurse in Saudi
Arabia. The importance of patients’ family’s needs in the ICU were perceived differently by the
nurses than the patients families (Kosco & Warren, 2000; Malliarou et al., 2014). Nurses comfort
was positively correlated with the explaining the patient’s prognosis, the possibility of patient’s
death and the explaining about the equipment connected to the patient (El-Masri & Fox-
Wasylyshyn, 2007). Better understanding of traumatic stress on families of critically ill
individuals may contribute to helping critical care staff communication with the families and
improve satisfaction of highly distress family members (Carlson et al., 2015). Some data in the
literature showed that ICU nurses had a considerably good knowledge about the needs of their
patients’ families’ needs and effectively met those needs (Blom et al., 2013). Even when nurses
were supportive and knowledgeable about the patient’s needs, they did not necessarily translate
that in their actions (Blom et al., 2013). Some patients’ families reported their dissatisfaction
with their inability to communicate with the same nurse everyday (Bailey et al., 2010). Some of
39
the patients’ families considered nurses as reluctant or unable to provide them with the
information they needed regarding care after discharge because they were more focused on their
daily nursing demands (Wong et al., 2015). Families believed that nurse are friendlier and easier
to approach when seeking immediate information (Wong et al., 2015). Nurse often played the
connecting channel between the ICU physicians and the patients’ families (Wong et al., 2015).
Perception of Critical Care Physicians in Saudi Arabia
Data about the perception of critically ill patients’ families towards physicians in Saudi
Arabia is currently not available. Critical care units are known for their stressful and busy nature
(Carlson et al., 2015).
Regret after Decision Making
Decisions regarding medical procedures, pharmaceutical therapies, and other medical
treatment can be harmful if were not chosen appropriately (Redelmeier & Shafir, 1995). Regret
after decision making is defined as a feeling of loss or distress over an action or inaction made
under condition of uncertainty (Steer et al., 2013). Decision regret reflects the feeling of distress
trigged by consideration of a previous treatment choice, after involving a comparison of the status
quo with a hypothetically better situation (Lavery et al., 2012). The process of deciding on
something is an explorative action guided by the importance of the desired outcomes (Diecidue &
Somasundaram, 2015). The ambiguity regarding the consequences of the choices leads to
possible regret because there is a relationship between regret and decision (Diecidue &
Somasundaram, 2015; Galadari, 2016). Whereas, Sunwolf (2006) argued that regret is always
associated with the decision-making process and is an inevitable consequence of it.
There are various definitions for the word “regret” ranging from very broad, “a more or
less painful cognitive and emotional state of feeling sorry for misfortunes, limitations, losses,
transgression, shortcomings, or mistakes” to quite narrow, “a psychological reaction to making
40
the wrong decision” (Connolly & Reb, 2005, p. 4). Decision regret is a condition that can be
prevented or reduced by applying the shared-decision making strategy in which the health care
professionals collaborate with the patient’s families to take the appropriate decision in the benefit
of the patient (Becerra Pérez et al., 2016). Bad and undesired outcomes result from actions are
regretted more than comparable outcomes that results from inactions (Connolly & Reb, 2005).
Regret after decision making results from the linkage between cognitive processing, the behavior
of taking a decision, and the emotional response to the outcomes (Hickman et al., 2012).
Often, healthcare professionals provide their clients and/or their families with multiple
choices which may cause potential conflict between the advice and one’s own opinion (Yaniv &
Kleinberger, 2000). Basically, decision makers in critical care settings may fail to evaluate the
advice and their own opinions equally, especially with a discrepancy between their perspectives
and the advice they receive (Yaniv & Kleinberger, 2000). Advice for decision makers will
expose them to potential conflicts between their own opinions and the provided advice (Yaniv &
Kleinberger, 2000). Even though involving patient’s family is a valuable concept, it is also
important for the care providers to avoid confusion between the decision maker’s preferences and
the patient’s needs (Mobeireek et al., 1996). The decision makers’ perspectives and his or her
psychological influences usually affect the way he or she may evaluate recommended options
against the self-opinion (Yaniv & Kleinberger, 2000). Decision makers may regret their decision
if they selected an option that had adverse outcomes (Hickman et al., 2012). Decision makers
normally tend to be skeptical regarding the advisor’s opinion when combining both and trying to
weight the respective values (Yaniv & Kleinberger, 2000). The information that patient’s family
receive is the key factor for their assumptions when making health-related decisions (Azoulay et
al., 2005, 2016; Carlson et al., 2015; Hwang et al., 2014; Sunwolf, 2006). If their assumptions
were not appropriate, they will show dissatisfaction with resulted outcome (Diecidue &
Somasundaram, 2015). The advice provided to the decision makers must be equally evaluated
41
with the available suggested opinions for meeting the desired patient’s outcomes (Yaniv &
Kleinberger, 2000).
Regret after decision making was found to be highly associated with younger age (Ben-
Ezra & Bibi, 2016). This confirms that growth and development may influence the decision-
making experience. Age often indicates an individual’s growth and development status (King,
1981). Growth and development are influenced by three factors: (a) environmental factors; (b)
experience and (c) genetic factors (Temple & Fawdry, 1992). Furthermore, it was significantly
predicted by demographics and anxiety level and significantly influenced by personal
characteristics and post-treatment symptoms/side effects (Berry, Wang, Halpenny, & Hong,
2012). Understanding the concept of growth and development is important for critical care
nurses and for other healthcare providers because it will assist them in helping their clients during
hard times (Frey et al., 1995; King, 1981). Regret after decision making can be resulted due to
the nature of the choice itself, the following consequences of the choice, or due to the process
related to the choice (Connolly & Reb, 2005).
The decision maker’s perspectives and his/her psychological influences usually affect the
way he/she evaluates the recommended opinions against their own (Yaniv & Kleinberger, 2000).
Decision makers may regret their decision if they selected the most adverse choice (Hickman,
Daly, Douglas et al., 2012; Hickman, Daly, Lee et al., 2012b). They normally tend to misjudge
the advisor’s opinion against evaluating the available options (Yaniv & Kleinberger, 2000). If
their assumptions were not appropriate, they will demonstrate disappointment about the outcomes
(Diecidue & Somasundaram, 2015). The advice and the opinion of the decision maker must be
equally evaluated (Yaniv & Kleinberger, 2000).
The uncertainty of the consequences of the decisions other than the chosen one, leads to
vagueness which may lead to regret about the decision-making experience (Scott et al., 2014).
Regret is also a transitive verb meaning that one typically regrets something (Connolly & Reb,
42
2005). In the decision context, we consider three possible types of regret, distinguished by their
targets: 1) Outcome regret, in which the target of regret is the outcome of a decision: “I regret
that my cancer has recurred, or that I am experiencing residual pain from the surgery”
(Connolly & Reb, 2005, p. 7). 2) Option regret, in which the target of regret is the decision
alternative chosen: “I have wished that I could change my mind about the kind of treatment I
chose for prostate cancer”(Hu, Kwan, Saigal, & Litwin, 2003, p. 2281). 3) Process regret, in
which the target of regret is the decision process preceding the choice: “I regret having made a
hasty, ill-informed decision with regard to my treatment options” (Connolly & Reb, 2005, p. 7).
Intuitive opinions are commonly susceptible to mistakes and often lead people who depend on
their intuitive thoughts in making-decisions to make harmful decisions (Redelmeier & Shafir,
1995). The uncertainty of the consequences of the decisions other than the chosen one, leads to
vagueness which may lead to regret about the decision-making experience (Scott et al., 2014).
Health-related regret after decision making may occur when patients believes their outcome
would have been better if they had decided differently about their management (Steer et al.,
2013). Brehaut, the Decision Regret Scale developer, and other researchers had reported that
mild levels of regret following a health-related decision with poor or undesired patient’s
outcomes were related to the lack of knowledge about the expected outcomes and the
consequences. Brehaut and other researchers, hypothesized that the cognitive process after the
chosen treatment can contribute to lower level of regret (Becerra Pérez et al., 2016).
Regret after decision making was found to be highly associated with younger age (Ben-
Ezra & Bibi, 2016). Furthermore, it was significantly predicted by demographics and anxiety
level and significantly influenced by personal characteristics and post-treatment symptoms/side
effects (Berry et al., 2012). The literature reported several risk factors for regret after decision
making: a) the decision-making process; b) sociodemographic characteristics; c) treatment
43
related; d) psychological conditions; e) cancer concerns, such as fertility; g) length of stay in the
hospital, quality of life; and h) other issues (Becerra Pérez et al., 2016).
Regret is always possible when there is more than one option and only one can be
selected. Most of the reported regret after making medical decisions was related to poor and
unsupportive communication, uncertainty, and/ or feeling that better options may have been
selected for better outcomes (Hickman, Daly, Douglas & Clochesy et al., 2010; Hickman, Daly,
Douglas & Burant et al., 2012; Hickman, Daly & Lee, 2012; Hickman & Pinto, 2014). In
keeping with longstanding cultural values, patients in Saudi Arabia usually expect to receive
healthcare by the same gender provider (Halligan, 2006). Saudi males often stay with their
spouses, sisters, or mothers during the performance of physical examination by a healthcare
provider (Halligan, 2006). Thus, management must recruit healthcare providers from both
genders. However, sometimes it is difficult to maintain the matched-gender approach (Halligan,
2006). While many healthcare providers consider the family as sitter and visitor for the critically
ill patients, often the needs and concerns of the family are overlooked (Al‐Mutair et al., 2013).
However, this approach is changing as more healthcare providers are attempting to move to a
more holistic style of involving the patients and their families in the care (Al‐Mutair et al.,
2013).
Summary
King’s Goal Attainment Theory GAT was used to drive this research into understanding
decisional regret in Saudi Arabians who made critical decisions for their loved ones. Particularly
in the current study, the concepts for the interpersonal system were thoroughly described which
included interaction; perception; time; decision making; transaction; growth and development;
stress; communication and role. The GAT was applied to the decision-making experience in the
critical care sittings in Saudi Arabia. The family decision makers, surrogate decision makers and
the critical care healthcare providers must demonstrate effective communication, mutual
44
perception, lowered negative stress and successful transaction to effectively accomplish the
desired patient’s outcomes and fulfill the goal attainment (King, 1997, 2007; Temple & Fawdry,
1992). Admission to the ICU happens unexpectedly and may impose stress on the patient’s
family and negatively impact them with triggering psychological and emotional responses (Al-
Mutair et al., 2014; Al-Mutair et al., 2013; El-Masri & Fox-Wasylyshyn, 2007; Wong et al.,
2015). The literature suggests that a patient’s family may be prone to develop psychological
complications such as post-traumatic stress disorder anxiety and depression (Al‐Mutair et al.,
2013; Al-Mutair et al., 2014; Azoulay et al., 2005; Frivold et al., 2018). The intensive care
personnel often require a representative for their critically ill patients themselves to make
important decisions when patients themselves are unable to do so (AlHaqwi et al., 2015; Bell,
1982; Booth et al., 2004). Untoward outcomes may lead to regret after decision making, which is
a complex emotional experience that can be prevented by better understanding the phenomenon
(Becerra Perez et al., 2016).
There is a demand to further explore the regret after decision making experience among
Saudi families of critically ill individuals. The current study contributes to the understanding of
the regret after decision making experience among Saudi families of critically ill patients. The
results will help healthcare providers, including nursing, to provide better care for the family of
the patient, which will positively improve his or her experience. Consideration of goal attainment
may prevent the condition of regret after decision making. There is a gap in the literature
regarding the experience of Saudi families in making medical decisions and the possible
experience of regret after decision.
45
Chapter III: Methodology
Introduction
The current research project focused on the experience and the possible regret after
decision making experienced by the family or the surrogate decision makers of critically
individuals in the Intensive Care Unit (ICU) in Saudi Arabia. The aim of the research study was
to further the knowledge about critical illness and decision-making experience among Saudi
Arabian individuals. Chapter III outlines the research study design, the target population, the
sampling, and measures for protecting the population and the data collection and analysis
procedure.
Research Questions
The following research questions were answered at the end of this project:
1. What is the lived experience of being responsible for making health-related decisions for
critically ill individuals in Saudi Arabia?
2. Do the family or surrogate decision makers for critically ill individuals verbalize regret of
their decisions after making them?
3. Do the family or the surrogate decision makers demonstrate regret on the Decision Regret
Scale?
Study Design.
The purpose of this descriptive convergent mixed methods study (Costanza et al., 2008;
Creswell, 2012) was to explore and better understand the experience of regret after decision
making in critical care settings in Saudi Arabia. The researcher in this type of design collects the
46
quantitative and the qualitative data in a parallel fashion, analyzes them separately, and
then merges them to build a meaningful interpretation (Costanza et al., 2008; Creswell, 2012).
Rationale for the Design. Bryman (2006) suggested that there are several reasons for
conducting mixed methods research. Some of these include: a) context; b) sampling; c)
explanation; and d) instrument development. The main reason for using mixed methods design in
the current research is to integrate the findings from both research design for a better
understanding the decision-making process in ICUs in Saudi Arabia.
The reason for collecting both qualitative and quantitative data in the current research was to
better understand the experience of Saudi families of critically ill individuals who made decisions
for loved ones and the possible occurrence of regret after decisions (Creswell, 2013; Dickson,
2007). To minimize bias and the possible influence by the Decision Regret Scale, the participants
participated in the interview first then answered the decision regret survey.
Subjects
Inclusion Criteria. Inclusion criteria for subjects of the study were the following: 1)
must understand Arabic; 2) must be 18 years of age or older; 3) must be family member of
critically ill patients who are hospitalized in the ICU for at least five consecutive days; and 4)
must have had made at least one health-related decision for the patient.
Exclusion Criteria. Exclusion criteria for subjects of the study were as the following: 1)
people who appeared stressed or were crying; 2) people who did not understand Arabic; 3) people
who were not actively involved in making decisions; and 4) people who were not interested in the
study or people who were skeptical about the study, especially about the voice recording.
47
Subject Recruitment.
Data Collection.
The approval from the Binghamton University IRB (Appendix-H) and the Saudi Ministry
of Health Institutional Review Board (Appendixes E-H) was obtained prior to data collection.
The interviews took place in a quiet room in the ICUs that was assigned for the purpose of the
research and interruptions were very rare. Some participants asked for clarification of one or
more of the survey items. One participant was illiterate, and the researcher read the survey
questions aloud and explained each question clearly. Furthermore, two separate amendments
were obtained from The Saudi Ministry of Health (SMoH) IRB through the King Fahad Medical
City, one for another researcher to read the transcript and double check the coding and the other
one for another researcher to perform the back translation of the interviews (Appendixes 10,11).
Process. The primary investigator (PI) communicated with SMoH and submitted a
research proposal to obtain an approval. A convenience sample of four hospitals in three cities in
Saudi Arabia was made by the PI. An approval was obtained from the SMoH with four directed
individual letters in Arabic to the health affairs department in Medina (Appendix-A) and Jeddah
regions (Appendix-B) and two letters directed to the IRB of King Fahad Medical City (Appendix-
C) and King Saud Medical City (Appendix-D). The SMoH provided the PI with a bilingual
Arabic English informed consent to be used during the data collection process. The PI then
contacted the research department and/ or training department in each hospital and provided the
letters from SMoH. King Saud Medical City in Riyadh (KSMCR), King Fahad Hospital in
Jeddah (KFHJ) and King Fahad Hospital in Madinah (KFHM). KFHM demanded an IRB review
again in addition to the thorough IRB review of the Ministry of Health.
KSMCR provided its own bilingual informed consent and performed an expedited review
with several comments and suggestions. The PI responded to all the comments. After an
48
expedited review, the PI was provided with an approval letter with the condition that there would
be an in-house co-investigator. The PI had also contacted the head of the critical care
departments and spoke with one ICU consultant who expressed his willingness to collaborate
with the PI. The heads of the critical care departments provided the PI with a letter stating
support for conducting the research in their respective departments.
Procedure. After obtaining the permission from the ICU department head from each of
the participating hospitals, the PI was present during the visiting hours in each of the hospitals’
ICU waiting rooms. During the ICU visiting hours, the researcher approached the potential
participants who were identified by the unit head nurse or the intensivist. The researcher
introduced herself and briefly asked if they were interested in joining a research study. When a
person expressed their willingness to participate, the study’s title and the purpose of the study
were briefly described. A bilingual Arabic and English informed consent were provided to the
participants, and it was read aloud by the researcher, allowing the participants to ask question or
concerns. The investigator clearly explained to the participants their full freedom of deciding not
to participate at any time during the study. Those who agreed to participate were interviewed
then were asked to answer the Decision Regret Scale.
The PI introduced herself to every potential participant then explained the purpose of the
study, the participating sites, and the qualitative and the quantitative strands of the study. Also,
the PI gave an estimate time required to finish the interview and answer the survey. The PI also
mentioned the desired number of participants in the study and the current number reached. The
participants who agreed to be interviewed were taken to a quiet place and the study was described
in detail. Informed consent forms were signed, and the demographic information sheet was
administered. The majority of the interviews took about twenty-five minutes. Some interviews,
while thorough, were considerably shorter, lasting about fifteen minutes. The participants were
thanked for their participation and a gift of appreciation was given. This gift was a grocery gift
49
card for the Panda Supermarket with the value of 33.75 SR that is roughly equivalent to $9 US.
Interestingly several participants refused to take the grocery shop gift card and took only the
thank you card.
Instruments
Demographic questions. All participants were asked to provide information about their:
1. Age. 18-25, 26-30, 31-40 and older than 40 years.
2. Education. High school or less, College and Higher education
3. Income. 5,000 SR or less, 5001-10,000 SR, 10,001-20,000 SR and more than 20,000SR.
4. Experience of making decision. One decision, two decisions or more than two
decisions.
5. Relationship with the patient. Spouse, parent, son/daughter, friend or other.
6. How do you describe your relationship with the patient? Strong, neutral or not strong.
7. Gender. Female or male.
Semi-structured interviews. Interviews are believed to be rich sources of detailed
qualitative data that contribute to understanding the participant’s experience with the
phenomenon of interest and how they describe it (DiCicco-Bloom & Crabtree, 2006; Kavanaugh
& Ayres, 1998; Turner, 2010; Valenzuela & Shrivastava, 2002). The interview protocol
refinement framework (IPF) provides the qualitative researchers with rigorous guidelines for
developing interviews. This framework is suitable for conducting semi-structured interviews.
The guidelines are composed of four steps including that the researcher:
1. must ensure that the interview’s questions are aligned with the research questions;
2. must construct an inquiry-based conversation with the participants;
3. may seek for feedback regarding the interview protocol.
4. may consider piloting the interview protocol to ensure the efficiency of the interview.
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The interview questions were constructed by the PI with the collaboration of the academic
advisor. The questions were repetitively reviewed and reworded to align them with the research
questions and the purposes of the study project. The questions were also structured in a way to be
appropriate and acceptable by the Muslim and Arabic culture. The interview questions were
structured to augment the aim exploring more about the decision-making experience for critically
ill individuals in Saudi Arabia.
Kavanaugh and Ayres (1998) suggested the following strategies to consider while
constructing research interviews:
1. assessing the participant’s entire behavior all the time during the interview and not only
the spoken words.
2. encouraging the participants’-initiated coping mechanisms.
3. providing researcher-initiated mechanisms to reduce harm.
4. evaluating the participant’s characteristics that impact his or her way of response.
When approaching a potential participant, the primary investigator took care to evaluate the
general appearance of the person and especially assessed signs of being anxious or upset. The
body language as well as the voice tone were evaluated and correlated with the responses to the
questions. Those persons who looked anxious or were crying were not approached. The
researcher clearly explained the purpose of the study and offered further clarification if needed.
When necessary, interview questions were read aloud to familiarize the participant with the
questions before the beginning of the actual interview.
The researcher emphasized the full freedom of the participants to withdraw from the study
anytime with no obligation or harmful consequences. The researcher also assured that the
interview information was to be kept secure and only used for this research study. They were
51
also assured that following analysis the data would be appropriately destroyed. Also, there was an
emphasis that no personal information would be shared with others.
Interview questions. The interviews ranged between five and forty-five minutes in length
with questions that were asked with a consideration of the Saudi cultural beliefs.
1. How is the patient doing today?
2. Can you describe how you felt when you made an important health-related decision for
your loved one?
3. How much were you able to involve your loved one in the decision you made for them?
4. How long ago was this decision made?
5. Was time a concern for you or did it influence your decision?
6. Did you ask for help?
7. Whom did you ask for help while making that decision?
8. How supportive were the doctor and nurses while you were making the decision?
9. Can you describe your feelings while you were making that decision?
10. What happened after you had made that decision?
11. To what degree do you know the patient’s preferences?
12. Were there any conflicts between your goals and the providers’ advice?
13. Would you like to have someone to talk to now?
14. Is there anything I could help you with?
Strategies to minimize harm in the interview process. When involving sensitive topics, such
as critical illness and decision making for a family member in an interview, we must direct
special concern to lower the participant’s distress. Researchers must avoid harm during all
phases of their study by knowing how to identify distress and minimize risk to each participant.
The examiner was:
52
1. vigilant in anticipating problems in the responses of the participants.
2. provided the appropriate support when indicated such as calming the participant or pause
the interview until the participant calmed down.
3. arranged for proper support when needed through the source of communication of each
of the participating departments.
4. debriefed after the interview by talking with the participants for better understanding of
their responses and taking notes for personal thoughts.
During this study, when a participant looked anxious or seemed uncomfortable, the
researcher offered to stop and reiterated their right to withdraw at any time. Some participants
who started to cry when answering the questions were willing to continue with the interview.
The recording was put on hold and participants were given time to become calm before resuming
the recording. Debriefing was offered for the participants at the end of the interview by asking
them if there is anything the researcher may help them with or if they had a need to talk with
anybody.
Interview translation
Strategies for translation of the interviews. Translation is mainly a process of adapting
field texts of data into research texts through forming judgments about equivalent meaning
(Regmi, Naidoo, & Pilkington, 2010). Qualitative researchers may face the challenge of trying to
maintain the accuracy of the participant’s perspectives, especially when the study was conducted
in one language and the data analysis was performed in another language (Regmi et al., 2010).
The analysis of qualitative data always centers on concepts of the culture being studied (Regmi et
al., 2010). Yet, understanding the meaning is crucial in the interpretation process (Regmi et al.,
2010). The best practice to maintain accuracy in the interpreting process is by using different
researchers to evaluate the recordings and transcripts. The literature suggests two distinct
53
methods of translating research interviews. One approach is to translate the interview verbatim;
however, this approach is considered tedious and time consuming (Regmi et al., 2010). The other
method is to interpret key themes or few quotes to add in the context of the report (Regmi et al.,
2010). In the current research, the first method was employed. The researcher translated the
interview verbatim while listening to the recordings. Regmi et al., (2010), suggested the
translation methods that used to translate the transcripts of the current research study.
Determination of the relevance. The researcher listened carefully to the audiotapes
several times and determined all the relevant parts in each of the responses then highlighted them
to help in creating the codebook and constructing the themes on the following chapter. In this
study, the whole of each of the interviews was translated into Arabic.
Forward translation. The interviewees’ answers were repeatedly revised to assure the
accuracy and the relevance to the origin content and that all the important parts were translated
properly.
The translated interviews were reversely translated back into Arabic to assure the
accuracy of the translation into English.
Testing the meaningfulness in the original and the target language. The primary
investigator reread and evaluated all the transcripts to make sure they matched the content of the
original response of the participants by checking the presence or absence of certain expressions
that the participants had mentioned. All the expressions about regret or sorrow were highlighted.
Also, feelings and emotions that were described as associated with the decision process were
pointed out in all the responses.
Revisiting the whole process. After completion, the primary investigator reviewed the
translation and the transcribing process where the transcripts were reviewed for word choice and
accuracy for several times to assure the precision and the meaningfulness of the translation. The
54
investigator kept jotting down her own perspectives while reading the transcripts for bracketing
strategy. This was done to minimize the confusion between the researcher’s feelings and
impression and the actual reported experience by the participants. Also, the researcher
deliberately diverted her own attention from the transcript and did some reading on qualitative
data analysis for two days then went back and started reading the translation and continued with
the coding.
Back translation. This is a crucial step to assure the accuracy of the findings (Chen & Boore,
2010). It is highly recommended that the person who perform the back translation be bilingual
and has a background in nursing (Chen & Boore, 2010). In this research, a colleague holding a
PhD in nursing was asked to perform the back translation. Several interviews were randomly
selected and provided for back translation. This person was bilingual in English and Arabic and
has had modest experience in qualitative research in nursing. An amendment was submitted to
the Institutional Research Board (IRB) department of MoH represented by the IRB department at
King Fahad Medical City in Riyadh (Appendix-K). The request was submitted to allow this
person to listen to the audio recordings of the participants and back translate them into English for
back translation assurance purposes. The amendment was approved, and a copy was provided to
the IRB of Binghamton University.
Decision Regret Scale (DRS). After successfully completing the interview, the
participants were asked to complete the Decision Regret Scale. The estimated average time for
filling out the survey scale is less than one minute (Brehaut et al., 2003). The survey is
comprised of five items rated on a Likert scale assessing the incidence of regret after deciding for
loved one who is critically ill admitted to the ICU (Brehaut et al., 2003; Hickman, Pinto, Lee et
al., 2012; Hickman & Pinto, 2014; Lorenzo et al., 2014). Its internal consistency reliability
coefficient is (α = .87). This reflected that the five items of the DRS were reliable for measuring
55
the same underlying concept, regret level for the decision makers of critically ill individuals in
Saudi Arabia.
As indicated by the scale developer, the scores for each of the items were converted to
reflect a score ranging from 0 to 100 by subtracting 1 from each item then multiplying by 25 for
easy evaluation and interpretation (Hickman, Daly, Douglas et al., 2010; Hickman, Daly & Lee.,
2012; Hickman & Pinto, 2014;). The average decision regret score (ADRS) was calculated by
reverse scoring the second and fourth items and then dividing the sum by the total number of the
items five (Brehaut et al., 2003). Higher scores denoted high level of regret and lower score
represented a low level of regret.
Translation of the decision regret scale. At this point in time, the scale is available only
in English and French versions. Because the participants of the current study were Arabic-
speaking there was a need to translate the scale before administering it to the participants. The
primary investigator contacted the scale developer to obtain permission to use the survey after
translating it into Arabic. Permission for using the measuring tool was obtained through personal
communication (Appendix-K) (Oct/26/2016) from the survey developer with the stipulation that
the researcher provided copyright acknowledgment whenever publishing the work. He also
suggested following the process and guidelines developed by Beaton and colleagues (Beaton,
Bombardier, Guillemin, & Ferraz, 2000) who suggested the following processes when translating
a survey to another language:
Phase-I. Initial translation: two bilingual translators whose first language was Arabic
translated the questionnaire and provided two independent translations. One translator was
informed about the concepts that were tested by the survey and developed translation #1 (T1).
The second translator was neither informed or aware regarding the measured concepts in the
questionnaire nor had a medical background and developed translation #2 (T2).
56
Phase II. Synthesis of the translation: the two translators and a recording observer spoke
on the telephone and synthesized the results and developed a written report about both
translations from phase one, labeled as report of transulation1.2 (T1.2).
Phase III. Back translation: the main purpose of this stage is to check the validity and to
make sure that the translated version reflected the same meaning as the original version. In this
phase, two translators whose mother language was English and thus should be naïve to the
measured outcomes, used the report of translation T1.2 and individually developed a back
translation. This resulted in two back translation reports, labeled as back transulation-1 (BT1)
and back transulation-2 (BT2).
Phase IV. Expert committee: according to Beaton et al. (2000), the expert committee
composed of a methodologist, language professional, health professional and translator should be
convened evaluate all versions (T1, T2, T1.2, BT1 and BT2) to develop the pre-final version of
the survey. Due to the difficulty of having a methodologist in this study, the committee
composed of the primary researcher as the health professional and the four translators and a
certified bilingual translation specialist had a telephone call meeting and discussed all the reports
and developed the pre-final version of the survey (Appendix-M).
Phase V. Pretesting: in this phase, the pre-final form of the questionnaire is tested with 30
to 40 subjects from the target setting. The researcher was in the USA and due to the geographic
factors, she tested the translated version of the scale here in the USA with Saudi students who are
bilingual and attend universities in the USA. There were no major comments or suggestions from
the persons who participated.
Phase VI. In the final stage, all the developed reports and translations were submitted it
to the instrument developer to review the submitted documents to assure that the suggested stages
57
were correctly followed, and the reports reflected that process. In the current research, the final
version was submitted to the tool developer.
Sites
King Fahad Medical City (KFMC). The ICU in KFMC was located in Riyadh city, the
capital of Saudi Arabia. The ICU department consisted of thirty-two beds that included medical
and surgical patients that were under the management of one intensivist. The visiting times for
the ICU including 1:30 pm to 4:30 pm from 7:00 to 9:00 pm daily. The interviews were
administered in a family meeting room that was closed and locked when interviews were in
progress. The main sources of contact for the PI in this hospital was the secretary, the head nurse
and the unit coordinators during the second visiting hours.
There was a separate isolation ICU section that was within the ICU composed of six
negative and positive pressure isolation rooms. Each room was double doored with a touch
sensor. The other twenty-six beds were distributed in single rooms and each room was equipped
with high technology equipment. The doors were double glassed with blinds in-between. There
were large windows in most of the rooms. Families were able to go inside the patients’ rooms
and there were chairs inside for them. The department’s gate was equipped with a sensor and
there was a desk and a chair for the security personnel to control the entrance of the visitors.
There was a large ICU waiting area outside of the department. The department had a family
meeting room to provide privacy for consultations with the intensivist, however, there was not an
assigned family hour for them to discuss the condition of the patients.
Communication. The interacting and communication in relation to this research were
done on three different levels. One level was communicating with the secretary of the
department. Second level was with the head nurse of the department and third level was the
communication with the floor’s coordinators. The floor’s coordinators usually worked night
58
shifts and expected the PI to come and collect the keys for the interview room if a person agreed
to participate in the study during the evening visiting hours. The head nurse had sometimes
helped by informing the PI if a patient family was in the unit.
Interview location. Because the visiting hours were often after the head nurse of this unit
was present, she provided the investigator with the key for the family meeting room. The room
was equipped with two couches, two desks, and a table that was used to put the recorder during
the interview. The room was quiet, which maintained the interviewees’ privacy and the door was
closed and locked when an interview was in progress.
King Saud Medical City (KSMC). The ICU in KSMC located in Riyadh and was the
largest ICU department among all the ICU departments of the participating hospitals with one
hundred twenty-eight beds designated as medical, surgical, burn, trauma, neuro, maternity and
isolation intensive care units Interestingly, all those departments and sections were under the
management of one intensivist. The visiting hours in all the departments were from 4:00 pm to
6:30 pm. There were security personnel at the entrance of each of the sections with a list of the
patients who were staying in that section and only two persons could see the patient at a time.
There was a family meeting room and one-hour family meeting time daily from Sundays through
Thursdays from 12:00 pm to 1:00 pm. The family meeting room composed of a large office that
contained of three offices with doors to maintain the privacy of the conversation between the
families and the physicians.
Communication. The main communication process took place between the PI and the
resource doctor who was designated as a co-investigator by the research center of that hospital,
the head of the critical care department, the head nurses, and charge nurses. However, the
communication between the PI and staff nurses was very limited.
59
Interview location. The interviews were carried out in different areas due to the large
size of the critical care area. In the burn ICU, the interviews were administered in the
intensivist’s room where it was quiet, and the door was closed when interviewing the participants.
The participants from the right and left wings, were interviewed in the unit head nurse’s office. It
was equipped with couch and two office desks and chairs. The PI used one of the desks while
interviewing and the participants sat on the chair while interviewing and desk when answering the
survey. There were two doors that were closed and locked during the interview to maintain
privacy and to assure a good-quality recording. The interviews for the trauma section took place
in the staff meeting room. This room was accessible to all doctors and nurses and sometimes the
patient’s family who are looking for the doctor. If doctors or nurses were inside the room, the PI
had to explain the situation and ask then nicely to leave and there was no problem encountered
regarding that. There were no participants from either the isolation or the maternity ICUs.
King Fahad Hospital Medina (KFHM).
The ICU in KFHM was in Medina which is the second Holy city for all Muslims of the
world. The ICU department was divided into surgical and medical wings with each wing being
composed of fifteen beds. There were two large doctors’ rooms one at each wing where families
could meet and speak with the doctors. Visiting hour was from 5:00 to 6:00 pm daily. However,
there was no specific family hour and whoever wanted to speak with the doctor had to come
before 4:00 pm to do so.
Communication. The communication in this unit was between the PI and the head of the
department. After he left for his vacation, the interacting was mainly between the PI and the head
nurses of both sections. Modest communication occurred between the floor’s staff nurses and the
PI.
60
Interview location. The interviews were administered at the office of the head of the
department. He was away for vacation and his secretary gave the investigator the key after being
approved by the head nurse of the unit. Privacy and quietness were maintained by keeping the
door closed during the interviews.
King Fahad Hospital Jeddah (KFHJ). The ICU at KFHJ is located in Jeddah, which is
on the Red Sea at the Western province of Saudi Arabia. The ICU department composed of
thirty-six beds that were divided into medical and surgical wings, both of which were managed by
one intensivist. Families of the patients had one hour from 12:00 to 1:00 pm from Sunday
through Thursday of each week to meet with the intensivists and discuss any matter related to the
patients. There was no family meeting room and usually they met the families in the doctors’
room. There was no waiting room outside the department, but there was a large waiting room in
the hospital’s main lobby downstairs. The visiting hour was from 4:30 until 7:00 pm from
Sundays through Thursday and from 12:00 to 7:00 pm on Fridays and Saturdays.
Communication. The communication in this unit in all matters regarding this research
was between the PI and the intensivist who was also the head of the department, either by phone
or a WhatsApp application. Very limited interaction took place between the PI and the staff
nurses of the unit.
Interview location. The head of the department gave the permission to the PI to use the
staff meeting room to carry out the interviews. There were several chairs, podium, blackboard
and a computer in the room. The PI assured the privacy and quietness during the interviews by
closing the unlocked door; there was little interruption during the interviews.
Data Analysis
Qualitative strand. The qualitative data component of the current study was comprised
of the transcribed responses to the fourteen questions listed above. Since the interviews and the
61
responses to the DRS were in Arabic, they were translated into English by the primary
investigator according to the translation protocol above. The recordings were listened to carefully
several times by the primary investigator and then translated and immediately transcribed into
English. Each interview was translated and transcribed entirely. The transcripts were reread six
times for rewording trying to reflect the most relevant words to give the closest meaning to the
original responses.
After reading the transcripts several times, the researcher created the codes depending on
the commonality or the importance of a word or an expression in the responses. A table of two
columns was created, one column for the codes and the second columns for both short and long
definition of each of the codes. All codes were numbered and colored to avoid mistakes. After
that, the codebook was used to code the transcripts. The coding process was performed in three
cycles. During the first cycle, each transcript was codded by colors and numbers according to the
definitions in the codebook. In this cycle, the codebook was composed of fourteen codes. The
codebook was submitted to two different persons with a clean version of the transcripts to code
them interpedently using the definitions. Both codes reviewers provided valuable suggestions.
The researcher spoke with each of the reviewers separately over the telephone to hear their points
of views and to discusses all different interpretations.
In the second cycle, depending on the discussion with the reviewers, the researcher
revised the codebook. Codes that had overlapping meaning were collapsed or deleted and some
new ones were created. This resulted in twenty-three codes for the second cycle. The updated
version of the codebook was again submitted to two reviewers of the first cycle. The researcher
and the reviewer had discussed the similarities and difference between their coding and finalized
the list of codes. Depending on the discussion, nineteen codes were finalized in the third and
final coding cycle.
62
Steps of themes development. The researcher adopted the thematic analytic procedure
as outlined by both Vaismoradi et al. (2016) and Vaismoradi, Turunen, and Bondas (2013).
There were several steps that the researcher followed to specify the emergent themes.
Initialization stage. In 2016, Vaismoradi with colleagues, described this stage as being
composed of several sub-stages including: 1) the researcher read the transcripts several times,
underlining and highlighting the important units of meaning, 2) The researcher looked for codes
and abstracts in the participants’ responses to focus more on the important parts from the
transcribed data, 3) the researcher also wrote reflective notes and bracket her own ideas about the
phenomenon and the participants. This step augmented the trustworthiness of the findings. The
investigator organized the codes in a table and compared them with each other to fined
similarities and differences.
Construction stage This phase composed of several steps including: 1) classifying, in
which the researcher grouped a large range of codes; 2) comparing, where the researcher
reviewed the codes and categorized them as a preparation from creating themes. Similar codes
were collapsed when indicated and if set of codes were repeated in a certain pattern they led to an
emergent theme; 3) labelling, in this this step, the researcher labeled the clustered similar codes
from the previous step; 4) translating and transliterating of the data, is very important to consider
the complexity of the influence of grammatical style in one language when the equivalent phrases
may does not exist in the other language. The language proficiencies helped in reflecting the
accurate expressions and feelings from the participants, some of those expressions and feelings
may were lost when translating from Arabic into English; and 5) defining and describing step,
where the researcher described the method used for identifying and abstracting the emergent
themes. In this stage, the themes are developed but need to be further defined.
Rectification stage. This stage composes of several steps including: 1) immersion and
distancing meaning that the researcher had to immerse herself in the collected data and inversely
63
distance from their data, so she can see and understand more, 2) relating themes to established
knowledge, when the researcher stayed connected with the literature to relate the emergent
themes with what was available in the literature, and 3) stabilizing step was when the researcher
created a list of themes and related subthemes without providing any connection between them to
assure transparency and trustfulness.
Finalization. This stage was the last stage of theme development in the thematic
qualitative descriptive data analysis in which the researcher developed a narration by writing a
story that described various themes and contents in following chapter.
Quantitative strand. The quantitative data component that was obtained from the Decision
Regret Scale (DRS) (Appendix-J) was analyzed using SPSS software. Even though DRS is a
five-item scale, regret is measured on a ratio scale that ranges from 0 to 100. The answers for the
measuring scale were analyzed using SPSS statistical software. Descriptive statistical analyses
were performed, and some histogram and box plots also were created for some of the
demographic data such as education, age and income to display the difference between the
participants. Also, the ADRS was displayed on histogram and plot box to show the variation in
the ADRS among the participants.
Even though DRS is a five-item scale, the average decision regret was measured on a ratio
scale that ranged from 0 to 100, as zero reflecting no regret and 100 reflects the highest level of
regret after a decision making. The scores were divided in four segments: a) no apparent regret,
b) mild regret, c) moderate regret and d) severe regret.
Integration methods. Mixing and integrating the methods in this study occurred during
several phases and are described in the following paragraphs. In the first phase, the interview
questions we constructed and informed by the items of the quantitative Decision Regret Scale. In
the second phase, we integrated the information by collecting the qualitative and the quantitative
64
data concurrently in the same interview with each of the participants. In the third phase, the
qualitative research section was analyzed first and reflected to the quantitative section. In this
phase, we analyzed the responses from the interviews and reflected them to the answers of the
Decision Regret Scale. Furthermore, the fourth stage, the integration process took place as
triangulating and validating the findings to answer the research questions. Triangulation was
made by using the findings from both research branches were used to describe the experience of
families and surrogate decision makers of making decisions on behalf of critically ill individuals
in Saudi Arabia.
Phase-I: integration during developing and instrumentation plan. During this phase,
we constructed the interviews questions to help in better understanding the decision making for
critically ill individuals in Saudi Arabia. The questions were worded to help assessing the
experience of regret and the possible factors that may influence that experience. The time for
making the decision, time after making the decision were hypothesized as factors that may affect
the experience of regret for the decision makers. Seeking help and support were believed to may
influence the decision-making process. The previous awareness of the patient’s preferences in
some studies was considered to affect the decision-making process.
Phase-2.: integration during data collection. The qualitative research was initiated first,
and the participants were involved in semi-structured interviews. The interviews duration widely
varied and ranged between five and forty-five minutes. Some participants were in hurry and
answered the questions with short answers where others gave their answers as a story. After
finishing the interviews, the participates were asked to fill the Decision Regret Scale survey right
away which took around a minute to finish it.
Phase-3 integration during data analysis. The interviews were transcribed and
translated into Arabic. Each of the responses from the interviews were analyzed and compared
with each of the answers of the survey.
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Phase-4. Triangulation, the results from both strands were synthesized and a combined
reported was created. The report explains how the families and the surrogate decision makers
perceived their responsibility of making serious decisions for their critically ill patients and
assessed the possibility of regret following those decisions.
Bracketing
Bracketing was the strategy the researcher used to assure awareness of personal
preconceptions of the phenomenon (Tufford & Newman, 2012). In the current research, the
researcher wrote notes during the interviews. Notes included the impression of the participants
and their characteristics to prevent confusion between participants’ responses and the researcher’s
impression about them. During the translation of the interviews, the researcher took a short break
between each of the interviews or whenever needed to distract the mind from the data and to clear
the mind from any influence of own interpretation and from any emotional reaction that may
occur from the responses of the participants.
The primary investigator was aware that she had never been responsible to make a critical
decision for someone else. However, while she was an emergency department and critical care
unit nurse, there were several occasions when the investigator witnessed some families trying to
make critical decisions for their loved ones in the critical care units and emergency department.
They often required more information and had concerns with the communication process between
them and the critical care physicians and non-Arabic speaking critical care nurses. Thus, the PI
felt that she had a working understanding of some of the issues confronting decision makers for
critically ill persons.
Summary
A descriptive convergent mixed methods research design is the selected approach for the
current research project. In this method, both qualitative and quantitative data were collected in
66
the same interview. To minimize the possible impact from the decision regret scale, the
participants first participated in the semi-structured interview and then were provided with the
Decision Regret Scale. The interview was assumed to take between thirty minutes to one hour.
Most of the interviews took half an hour or less. On the other hand, the Decision Regret Scale
took around one minute for the participants to answer it.
The study was conducted in Saudi Arabia where the main language is Arabic. The
interviews and the measuring scale were both administered to the participants in Arabic. The
DRS was translated following some specific guidelines, whereas, the interviews were transcribed,
coded and themes emerged from the created codes.
All of the interviews were translated into English and organized in transcripts. Those
transcripts were read thoroughly, and all the important codes were highlighted and numbered. A
codebook was created with all the extracted codes and their definitions. Common and related
codes where categorized in categories. Themes emerged from the all the developed codes and the
categories. Each theme is going to be thoroughly discussed with direct quotes from the
participants in the following chapter.
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Chapter IV
Data Analysis
Data of the current research were collected from four participating critical care units of
hospitals in Saudi Arabia. The participants from all of the sites engaged in semi-structured
interviews followed by answering the Decision Regret Scale (DRS). The qualitative data from
the interviews were coded then emergent themes were finalized. The responses to the DRS were
calculated and averaged which ranged from 0-100. The lower the score of the average, the lower
incident of regret following decisions. The analysis for all the data will be displayed in this
chapter.
Sample
The thirty-four participants who participated in this study were mostly males (N=23),
while nine were females. It must be noted that when potential females were approached to enter
the study, they often referred the researcher to their male relatives (father, spouse, brother or son).
It is not clear if that happened because women did not want to take the responsibility for making
serious decisions, or because the traditional role that males take as the figure of authority in the
family structure due to the cultural beliefs. On the other hand, there were some females who
were very confident and were the primary decision makers for their relatives. Female participants
appeared to be more open to describing their emotions and more descriptive and expressive when
talking about their experience of making decisions. One female who was originally willing to
participate then declined when she found out that she would be recorded. On the other hand, it
appeared that male participants were more conservative about talking or describing their emotions
and feelings.
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Demographic Data Analysis.
The ages of the participants were categorized into ranges to insure anonymity. One
participant was aged between eighteen and twenty-five years old, six (17.6%) of them aged
between twenty-six and thirty years old, fourteen. (41%) of the participants aged between thirty-
one and forty years of age, and thirteen (38%) older than forty years of age (See Table-1). The
education level of the participants varied between being self-described as illiterate and graduate
education. The majority had high school education or less and sixteen people had undergraduate
education, while only three had graduate education (See Table-1).
Five of the participants either unintentionally missed answering or intentionally did not
want to answer the question about their income status. Twelve reported that their economic status
was less than five thousand Saudi Riyals, which equals to $1333 US. Five responded for monthly
income between five and ten thousand Saudi Riyals that ranges between $1333 US and $2666
US. Three persons had more than twenty thousand Saudi Riyals monthly and that is equivalent to
$5333 US. (See Table-1).
The participants were asked about their relationship with their patient in the ICU. The
sample of relationships was composed of two spouses, six parents, fourteen sons or daughters,
five siblings and six described their relationship with the patient as either a surrogate decision
maker, second degree relative or in-laws. Two participants, who were close family members,
also held legal surrogate decision-maker status. One was a legal surrogate decision-maker but not
a relative. All the participants described their relationships with their patients as a strong
relationship.
The frequency of being exposed to making critical decisions for someone else other than
selves was also assessed. Approximately, fourteen participants (41.2%) made at least one
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decision, five (14.7%) made two decisions, and fifteen of them (44.1%) had been exposed to
making health-related decisions more than twice.
All the participants were Muslims and spoke Arabic. The majority, about twenty-seven
were Saudi, while other nationalities included Egyptian, Syrian, Sudanese and Yemeni. A few
participants asked the PI more in-depth questions about the purpose of the study, but most were
satisfied with the information the researcher provided about herself and the project. Some
participants expressed their sense of feeling rushed to answer at the beginning, but then felt more
relaxed as the interviews went forward. A few participants expressed skepticism about the
questions of the interview and wanted to hear or read the questions before they agreed to
participate in the study. Two or three stated that they agreed to participate out of curiosity.
The following table depicts the demographic data that was collected in four hospitals intensive
care units (see Table-1)
Table 1
Demographic Characteristics of the Sample (N=34)
Variable No % Age
18-25 25-30 31-40 Older than 40
Gender Female Male
Education Lower than high school Collage education High education
Experience of making decisions One decision Two decisions More than two decisions
1 6 14 13 11 23 14 17 3 14 5 15
2.9 17.6 41.2 38.2 32.4 67.6 41.2 50 8.8 41.2 14.7 44.1
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Strength of the relationship with the patient Strong Neutral Not strong
Relationship with the patients Spouse Parent Son/Daughter Friend Other Brother/sister
Income (monthly) Less than 5,000 SR 5,001 – 10,000 SR 10,001 – 20,000 SR More than 20,000 SR
34 0 0 2 6 15 0 6 5 12 5 11 1
100 0 0 5.9 17.6 44.1 0 17.6 14.7 41.4 17.2 37.9 3.4
Income. Five persons of the participants in the study either refused to provide an answer
regarding their income or they just skipped or missed that question. 41.4% of the remaining
reported their income as less than five-thousands Saudi Riyals and 37.9% reported their monthly
income to be more than then-thousands and less than twenty thousand. The monthly income for
17.2% of the participants was more than five-thousand but less than ten-thousand and only 3.4%
of them earned more than twenty-thousand Saudi Riyals a month. Furthermore, statistics showed
a relationship between the monthly income and the ADRS. The people who reported no, low or
mild regret, had a monthly income of less than five-thousand Saudi Riyals. Participants with the
monthly income between 5,001 SR and 10,000 SR reported the least experience with regret after
decision. The highest level of regret was in the group with income of 10,001 SR and 20,000 SR.
The least report of regret incident was in the group who had more than 20,000 Saudi Riyals a
month (Figure-2).
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Figure 2. Income & ADRS
Time Elapsed from Making Decisions. The participants varied in the time passed from
making the decision to the time of the interview. The data for four participants were missing
about the time from the decision was made to the interview time. The person who showed high
level of regret, reported the longest time from the decision which was 960 days (see Table-2).
Table 2
Time Elapsed from Making the Decisions
KFHJ KFHM KSMCR KFMCR
3 days 7 days 60 days 1 day 14 days 90 days 4 days - -
7 days 4 days 4 days 4 days 5 days 7 days 75 days 10 days 4 days
- 8 days 60 days 30 days 960 days 4 days 6 days 20 days 30 days
3 days 20 days 35 days - 30 days 14 days 210 days - -
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Age. As shown in figure 3, there was no specific relationship between the participants
age and their report of regret after decision. The highest level of regret was reported among the
group aged between twenty-six and thirty years old (Figure-3). This was not significant due to
the small sample size.
Figure 3. Age & ADRS
Relationship to Patient. Two participants (5.9%) were spouses of the patients, six
individuals (17.6%) were parents of their patients. However, fourteen participants (44.1%) were
either daughters or sons of the patients. Six people (17.6%) were either a legal decision-maker or
somebody who knows that patient but was not directly related to the patient. Five participants
who represented 14.7% of the total were siblings to the patients. None of the decision makers
were friends of the patients. Finally, the relationship with the patient was not significantly related
with the average decision regret score of the participants using a nonparametric median test due
to the sample size.
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Gender. The majority of the participants were males (67.6%) and 32.4% were female
decision makers. The total score of decision regret scale in relation to gender was not significant
using nonparametric correlations, because the number of the male participants was almost double
the number of the female participants as displayed in Figure-4. However, females tended to
report average regret more than males, but this is not significant due to the ratio of male numbers
to the females.
Figure 4. Gender & ADRS
Education. Eighteen participants (41.2%) had an education level lower than high school
and sixteen (50%) had at least college education. Only three persons (8.8%) had a high education
level (Figure-5). By doing nonparametric median test revealed that, the highest level of regret
was reported by a participant who had an education less than collage. Whereas, the moderate
regret from decision making was reported from a male participant who holds a college degree.
The lower level of regret was among people with higher education. Education level was not
significantly related to the average decision regret Score due to the small sample size in this
study.
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Figure 5. Education & ADRS
Experience with Making Decisions. Fourteen participants (44.1%) had made more than
two decisions and fifteen (41.2%) had made only one decision. Only 14.7% from the participants
reported two times of making decision for their patients.
Strength of the Relationship. All participants described their relationship with their
patients as strong relationship. This was not significant relationship with the reported regret after
decision.
Discussion
The findings of the study revealed that there was a relationship between the reported or
expressed regret during the interview and the score of regret in the DRS. The only one person
who clearly mentioned his regret and pain resulting from the decision he made for his mother,
scored the highest on the scale among all the participants. A brother of a patient who scored
moderate regret in the DRS, reported his hesitation of making any further decisions due to the
deterioration of his brother after the first decision he had made. The person who reported high
level of regret had the longest time from making the decision. The other person who
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demonstrated moderate level of regret, made the decision thirty-five days ago from the time of the
interview. The remainder of the participants scored between no regret and low regret score they
varied in the time from making their decisions. However, this was not significant due to the
sample size. Education level was not significantly related to reported regret, but the highest
regret reported from a person who had an education at the high school level or lower. The
moderate regret level was reported from a participant who held a college degree. Gender was
also none significant in relation to ADRS. Age was also not significant in relation to the score of
ADRS. Almost all participants reported their confidence regarding their patients’ preferences
specially who scored lower level of regret. However, the person who reported high level of regret
was aware of his mother preferences at the time of the decision and she agreed to that, but after
2.5 years they both regret the decision.
Qualitative Data Analysis
Several themes had emerged from the translated transcripts of the participants’ response
during the interview. The emergent themes will be discussed more in the next chapter.
Emergent Themes
Theme # 1: alhammdullilah…the role of the religion. There are many religious and
cultural obligations that may differentiate the decision-making process that occurs in Saudi
Arabia from other places in the world. All the participants were Muslims who professed a strong
faith in Allah by stating that he is the source of power in the whole universe. One son of a patient
said, “whatever he says will happen, it will happen, he’s above everything and everybody”. They
believed that everything that happens comes from the creator Allah and must be accepted saying
that “we’re doing what we can and the rest on him” and “we trust Allah and whatever comes
from him, we’ll accept it”. Due to this submissive posture, people stated that they trusted Allah
but also believed that they must try and work hard to get what they wanted. One participant said,
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“we have a strong faith and trust in Allah”. But there was also the sense that if they did not get
what they wanted in life, that it was not good for them and they must accept it. One participant
stated that “my father believes in Allah and accepts his fate” and further stated that “Allah knows
the best for him”. When asked about their loved ones’ condition, almost of the participants
replied with the word “Alhammdullilah”, which can be translated to mean praising and thanking
Allah for everything and stating acceptance for everything that happens in one’s life. This attitude
is highly esteemed in the Saudi culture and believed to be related to high rewards from Allah.
While they often reported crying, being angry or anxious, they all agreed on the point that
“do what we have to do and whatever happens, it happens because of Allah and we should accept
it”. The participants also described a belief that there was nothing impossible to Allah and that
he can recreate a human being from decomposed bones. So, if their loved one was almost dying,
they believed that, if Allah wanted to bring that person back to life, he would definitely do that.
Seventeen had expressed their submission to Allah and acceptance of the situation at least one
during the interviews. Most of the participants mentioned their faith in Allah on multiple
occasions. Most participants mentioned the impossibility to preventing something from
happening if Allah wills it to happen stating that “if he or she dies, then that’s something we can’t
prevent or avoid”.
Theme # 2: Istikharah. A theme that was less frequent but compelling was Istikharah,
which is a very important concept and practice for Muslims. This can be translated as a prayer
practice that was recommended by Prophet Mohammed (peace be upon him) to all Muslims to
perform whenever they must choose between two or more options. It is a prayer where the
person prays two rak’as and then reads a special supplication asking Allah’s guidance and help in
choosing the appropriate decision. Some people say the answer may come in a dream and some
say it is only a feeling a person gets towards one of the options or it may just be as all
circumstances will go easier in one direction than the other options. Six participants explicitly
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mentioned this practice as the first step of their decision-making process. Many used it as a
crucial part of any decision-making process especially with major decisions by stating that
“…and I always ask Allah to guide me and protect her”. When the decision makers were asked
to sign a consent form, they related to the PI that they signed it but felt a strong faith that it all
depended on Allah’s will saying “if Allah wills”. No matter what the result would be, the person
should accept it and know it was for his own benefit and he would be rewarded for that
acceptance with the knowledge that “Allah knows the best for him”. A daughter of a patient said
the first thing they wanted to do when they were asked for their approval related that “Yes, that
made us perform Istikharah with all of us at the same time”. She further stated that “we asked
them when they needed our decision because we also asked them if we could pray Istikharah”.
An only child of a patient who agreed to a tracheostomy for her loved one described her
experience as being not easy and she felt that she had to pray Istikharah. She said, “It was not
easy and after that everybody was convinced with me that I prayed Istikharah and after all,
Allah’s will, is above everything”. A participant considered the necessity to pray Istikharah
whenever they were asked to make decisions and stated that “we must perform Istikharah every
time”. Another stated that “ before I made that decision, I did Istikharah more than once and
then I made the decision”.
Theme # 3: comprehension of information and attitude towards received information.
The participants varied in their level of information regarding their loved one’s condition,
diagnosis and treatment regime while in the ICU. Some reported previous experience with
making serious decisions for the same patient or another loved one. They varied in their
eagerness to seek more information regarding the patient’s diagnosis or the suggested procedure.
Some used informal methods for gaining more information such as Google and other online
medical sources. One said that “I used my phone, you know now everybody can get anything
through their phones”. “I made the decision with a collaboration from my dad, I went and did
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some online search”. Some asked the critical care doctors and nurses for more information. A
participant said that “I had to consult other doctors and I even spoke with on call doctors too. It
was not easy and after that everybody was convinced with that, I prayed Istikharah after that”.
The remaining were satisfied with the information they received. One said, “about information, I
am satisfied”. It is not clear why this group of people did not ask for more information, but the
data suggested that there might be many different reasons for this. For example, some suggested
that they lacked knowledge about what to ask while others felt that they already had enough
information about the situation due to a previous experience or by educating themselves. One
man said that “it is a very safe procedure there is no side effects from…”. Some of the decision
makers searched for information by asking other patients’ families, relatives or friends. A
participant said that “when we started to ask people around, somebody warned us not to sign the
consent because the contrast will impact the kidneys”. The information received from these
various sources were either positive and supportive or negative and disheartening. One said that
“I have even asked one of my close friends and one of them said something really affected me, He
said: his dad did this surgery four times. My other friend told me not to worry and that the open-
heart surgeries nowadays are like tonsillectomies”. One woman mentioned that after she signed
the consent form, she talked with her relatives and they told her about their bad experiences that
made her skeptical and hesitant about the decision she had made. She said, “the doctor when
spoke with me told me that his condition is not very serious, but people made me worried”.
The eleven participants who received information from physicians expressed their
satisfaction with the amount of information they received. A participant related that “they gave
me all the major and tiny details” while another said that, “the picture is clear, and they told me
about 80% of the details”. The remaining related concern about the level of information they
received and felt the need to seek more help and support. Friends and acquaintances, including
the families and relatives of other patients in the unit, were also reported as sources of
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information for some the participants. The information received from friends and others was
reported either as their own personal experience or just a story that they heard from somebody
else.
Theme # 4: gender and decision making. The participants of the study were from both
genders; however, the number of the male participants was almost double the number of the
female participants. The participants described their feelings regarding the responsibility they
had been asked to make but varied in their perception regarding the responsibility of making
decisions for their patients. The attitude towards the responsibility may have been affected by the
social obligations for the majority of the Saudi population. That is, many women refused or
stayed aside from making those serious decisions. They automatically delegated that to their
male relatives who could be spouse, son, uncle, father or a brother of these women who refused to
step up and make the decisions for their patients. On the other hand, there were a few women
who were very confident and independent. Interestingly, they reported their intention to avoid
any influence when they made the decision. They felt it was their full responsibility and they
were capable of doing it. Some males expected that they were responsible for making decisions
for their loved ones. One decision maker who was the spouse of the patient said, “but normally
for a wife, she will tell me whatever you see proper, do it…Even if she were conscious and I
asked her, she will ask me “what do you think?’ This also in our daily lives too”. Another
decision maker was the eldest son of the patient said, “yes I signed the consent I’m his eldest
child”.
The researcher approached several females who seemed potential participants. Most of
those females spontaneously replied that their male relative as brothers, fathers, sons or other
relatives were the ones responsible for making the decisions. This occurred even when those
females were the first level relatives such as mothers, wives or daughters. One potential female
participant was willing to participate but refused after she was informed about the voice recording
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of the answers. However, the eleven female decision makers who actually participated in the
study were self-confident and strong on their position of making serious decisions for their
patients. One participant said, “I rejected right away I was avoiding any influence because there
was no need for that”. Another participant who was the wife of the patient said that she was
responsible to make the decisions because she was his wife and said, “I am his wife and I am the
one should make all the decisions related to his health”.
Theme # 5: the burden of responsibility. Several decision makers expressed the burden
of the responsibility for making serious decisions for someone else by saying that “this was hard
very hard”. Many of them expressed their feelings with deep sighs and one subject even cried.
One participant described her burden further by stating that “I don’t wish anybody to go through
what I have been through”. A female expressed the pain of the responsibility for making
decision, “…however, being responsible to put him under this risk, it hurts me a lot”. She also
mentioned the difficulty of making decisions by relating that “his family think that it was only a
simple procedure, they have no idea about the burden on my shoulders and the heaviness on me”.
Some decision makers mentioned that they had to play the decision maker role because
there was no one else who would take on that role. As a result, they only made the decision not
because they wanted to, but because they felt that they had to. One woman said, “we were all
standing talking with the doctor, suddenly, everybody disappeared and left me alone, I was left in
front of the canon”. Another man said that “all my eight male siblings refused to make the
decisions or to sign the consent and left all of the accountability to me”.
The majority of the participants felt the burden of the responsibility of making serious
decisions for someone else and especially for a family member. One considered making the
decision without the patient’s approval was a deception. She said that people from the medical
field do not feel the burden on family decision makers. Another said that “I felt like we deceived
our mother, we didn’t give her time to think and decide herself”. A son who made the decision
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considered it a difficult responsibility when he said that “the decision I made was serious and
could have affected my mother’s health”. Another participant wished to share the decision with
his mom and not do it alone. He stated that “I wished she was awake, so we would ask her
opinion”.
Making the decision was considered as an exposure to high risk. One participant said
that “the doctor told me: you don’t have another option, but you’ll be responsible for the risk”.
Another said that “I’m taking a risk” and then further wondered if “I will put him under another
risk again I still can’t believe that he survived the other risk and don’t want to expose his body to
another risk”. A son of a cancer patient said that “it was very hard, very hard for me to make
that decision…”. A legal surrogate decision maker said that “there was no hesitation, it was
humanity and a health-related issue”. Many participants expressed their perception of the
responsibility they felt with deep sighs. Interestingly, only one participant mentioned that she
was happy doing something for her father and said that “it was nice, it’s my dad that I’m
helping”. She went on to say, “It feels good to make decisions for my dad”. This was somewhat
surprising as she looked anxious during the interview which was the same time her father was
getting a dialysis catheter inserted.
Theme # 6: perception of care providers and communications. The perceptions about
the ICU nurses and ICU physicians were described differently.
6.1. Perceptions of critical care nurses’ role and communication. The participants were
asked to describe their perception of the role of the ICU nurses during the decision-making
process and they had diverse responses. As described previously, the majority of the critical care
nurses in the participating hospitals were non-Saudi and non-Arabic speakers. Thus, language
and/ or cultural barriers could be the reasons behind the repeated responses from the participants
about the negative or absence of involvement of nurses in the decision-making process.
Furthermore, nurses were reportedly avoided answering any questions regarding the patients and
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referred the questions to the doctors. Some nurses reportedly confirmed their knowledge about
the patient’s condition but denied their authority to give out that information. One participant
mentioned that he tried to approach only Saudi nurses regarding any questions he had about the
patient. One other participant reported that a couple of nurses told her that “if she were my
mother, I would not approve the tracheostomy procedure”. Other participants said that the nurses
were the reason for the decision they made. Some participants reported sensing that the long-
hour shifts led the nurses to be exhausted and not willing to participate or communicate with the
families of their patients. They also some reported that nurses asked them to sign the consents
but offered no information or explanations.
The majority of the participants believed that nurses are only executors who carry out
doctors’ orders and do not participate in decision making for their patients. A few participants
reported an active role of the nurse in the decisions they had to make for their patients. Most of
the participants reported that nurses did not participate in making the decision and that they more
focused of providing the ultimate care for their patients. Some believed nurses do not have to
participate in the decision-making process. Only few reported an active role the unit nurses
played during their process of making health-related decisions. One man said “no, nurses you
know they only can take care of the patient”. One believed that nurses are only to follow
physicians’ instructions “No nurses are only “executers” they only provide care and carry on
doctors’ orders but are not involved in decisions”. He further stated that nurses have “no
involvement at all, you know nurses’ job is caring for their patients. They didn’t know all the
details; their main focus is to make sure that the consent is signed to fulfill their job”. A
participant who was also a nurse thought that her being a nurse may have caused the passive role
of the nurses in her decision-making experience. She said that “…if I wasn’t there, since I’m a
nurse and knew everything, they might have backed-off and avoided interfering and let me take
over, so I took over”.
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Some participants believed that nurses are responsible for giving care including
medications to their patients. One said that “nurses never interfered or participated”, while
another said that “nurses didn’t assist in the decision at all”. Some participants reported that the
ICU nurses told them that they did not have the authority to participate in the decision-making
process. One said that “they left everything to the physician and they only told me about her
general condition, if there was anything, they always referred it to the physician” Generally,
most of the participants reported little or no participation by the nurses.
However, one surrogate decision maker reported an active role for the nurses by stating
that “nurses in the other hospital told me it is better if you transferred her to a specialized
hospital because we don’t have all the supplies and services she would require”. Another
participant reported an active nurse role when she related that “yes, the nurse helped me, she told
me it was a necessity and there shouldn’t be any delay”.
Another participant thought that nurses did not have the authority and they only seek the
signature on consent forms. She said that “No, you know nurses don’t have the authority to do
that, it is physicians and consultants’ duty. Nurses will only give the consent form to the family
and ask them to sign it that’s it”. Another said that “it was only the nurses before who just asked
us to sign the consent”. In some cases, the families reported that nurses believed that they should
not provide any information or clarification “…They say we don’t have the authority to answer
your questions you should go back to the doctors”. Another said that “you know nurses are
allowed only to deal with treatments & medications, they don’t even have the authority to talk
about the patients’ condition. They can’t do anything without the physician’s order”. One man
said “No, nurses didn’t actively help me, everything was from the doctor”. A participant
expected the nurse to give him the information he needed and was surprised that “I asked the
nurse and she didn’t give me any clear information”.
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6.2. Perceptions of physicians’ role and communication. Participants had a very different
perception of the ICU physicians from that they had of the nurses. The physicians were generally
trusted providers. However, the decision makers responded in various ways to the doctors’
suggestions. Some of them agreed and just trusted the doctors’ knowledge where others simply
rejected the physicians’ input. A third group of decision makers were hesitant to trust and needed
more information about the patient condition and used several information sources and methods
to gain the information they needed to make the final decision. Medical doctors in Saudi Arabia
have the most prestigious image among other medical care providers according to the majority of
these participants. Most of participants from this research study reported feeling that doctors are
very knowledgeable. They often mentioned that what the physicians told them was the best for
the patient. Interestingly, one person stated that “physicians never make mistakes and if they ever
made a mistake, they always take responsibility for it”.
Regardless of the image of being knowledgeable, physicians were often accused by
participants of having limited amount of time and thus not spending enough time with their
patient or their patients’ families. Also, given the discrepancy between the general spoken
language by the patients and their families and the spoken language by the health care providers
in Saudi Arabia, there was concern that the limited time for interaction resulted in inadequacy of
information the doctors could provide to their patient or to their families. Also, doctors were
perceived to be busy and thus overlooked the informational needs of the families of their patients.
Some participants reported their inability to meet the intensivists and ask them questions because
the visiting hours are after the working hours for the physicians. The family members usually
came after the physicians had already left, and nurses were only there to ask them to sign the
consent and offered limited explanations.
Some of the participants relied on the knowledge and trustworthiness of the physicians.
More than one participant said, “the doctor always knew better than us”, while another replied,
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“I don’t have any medical background, so I had no choice but agreeing with the doctors”.
Another participant mentioned that “yes the ER nurse helped and told me it is better to send the
patient to the ICU”. One participant said, “I trust the physicians and the knowledge they have,
they understand the condition better than me”. Another said “…and I trusted the physicians, and
I made my decisions depending on their opinion”. A third person said, “I do trust the doctor and
he’s knowledgeable” and valued for their role in the decisions making and in general “they
always explained everything clearly to us. The ICU doctors had explained everything in detail”.
Another said that “the doctor explained the procedure to me and said it was simple”.
Less frequent responses were negative perceptions regarding the doctors’ role during the
process. One said that “there was no doctors during the visiting hours”. One participant was not
happy with the way the physician provided them with the information by stating that “the doctor
shouldn’t talk in front of him, he was supposed to take me aside and talk with me and tell me the
story” and as “they explained the seriousness of the condition”. A participant thought doctors
are not always clear in what they say “...because you know sometimes physicians keep secrets,
and I’m fine with it”. Most of them expressed their satisfaction with information they relieved
from the care providers. Whereas, some had acquired more information by online searching
Google, YouTube or other sources. One very interesting statement was made by one of the
participants who said that “you know, I had to go around the unit and talk with families of a
patient with a tracheostomy”.
Theme # 7: influence of perceived pressure. The participants in this study had reported
different sources of perceived pressure that influenced their decision-making process. For this
study, the pressure was categorized in three subcategories including: situational, time, and social.
Situational. Some of the participants reported how the ICU physicians created pressure
on them to make the decisions. One said that “the cardiologist said that he needs a stat open-
heart surgery”. Similar pressure was experienced by another participant who said that “they told
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me I had to sign, and the procedure was already scheduled for the next day”. One decision
maker did not see the physician or receive any explanation and had to sign the consent afterhours
for the physicians. He stated that “the surgery was scheduled already on Tuesday and they came
to us at the beginning of the visiting hours on Monday and asked us to sign the consent form”. A
male decision maker mentioned his surprise at the necessity to sign the consent with no
clarification by stating that “they only came and mentioned that they needed to do CT scan with
contrast”. Another said that “they told us he needs a catheter to be inserted ASAP. They told me
as his brother, will you approve that?” One participant said that “the physician said, it must be
inserted becasue there isn’t other option”. A son of a patient said that physician seemed to
pressure his mother to agree to the procedure and that pressure forced him to sign the consent.
He explained that “my mother was swayed by the physician, otherwise she was against the
procedure”. A husband of a patient found himself under the pressure of the possibility of
missing a serious problem if the procedure was not done. He further stated that “he told me if you
refused, then if there was a chance for internal bleeding and then we won’t be able to manage it”.
One participant said that the physician said that “we need you to sign the consent to allow us to
remove anything that might need to be removed on our way”. Some physicians gave some of the
decision makers an indirect message about the situation of their patients. One person said that “I
sensed as if she was saying, that is the only option you’ve got, the tube of the mechanical
ventilation must be removed”. One decision maker found himself obliged to agree knowing that
the patient’s situation was critical with or without the procedure. One participant knew that
“even though he was a high risk, they were going ahead with the surgery”. A female participant
said that “they said, you need to decide now, so you either say yes and we take him now or you
say no and that’s it”. Another situation that was reported as a decision maker of a patient who
was from another country found himself responsible for the decisions of the patient because “he
has no relatives here, he’s from Sudan so I have to represent him”.
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The patient’s condition was the reason for some of the participants to make serious
decisions for those patients whereas, the seriousness of the patient’s condition led some of the
participants to refuse the doctor’s suggestions and refused to sign the consent.
Time. Time was reported as another source of pressure for sixteen of the participants
whereas seventeen people did not feel the need to decide under any time pressure. Several
participants to the study reported that there was a time pressure that influenced the decision-
making process. One participant said, “I had to make the decision at that moment”. One
participant said that “they gave me about three to four days to decide, there wasn’t any medical
urgency”. A daughter of a patient said about her decision for a tracheostomy for her mother,
“they told me about it and asked me to think about it over the weekend”. However, another
participant felt that “time was very critical, they even called me while I was at work and I made a
permission and came to the hospital”. Another one said, “time was very important, but they also
gave me my time to think and decide”. Several decision makers mentioned that their patients
were alert and had already orally approved the procedure and left the decision maker with only
the obligation to sign the consents. A participant said that his brother (the patient) had already
agreed when he was still alert and oriented and noted that “he had already agreed to them, he left
me with no options”.
Social. Some of the participants reported experiencing various forms of what can be
described as social expectation pressure. Some decision makers wanted to be involved in the
decision process whereas, some found them themselves obliged and expected to do so due to
social factors. One participant who was a head nurse of cardiac unit, found herself responsible
for making the serious decisions for her brother in-law and said “...his family were looking at me
and their eyes as if they were asking me, what do you say?” She went on to say that she
tried to get support from her husband, but he mainly relied on her knowledge. She said that
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“whenever I asked him, he says it is all on you, you’re the one who understands the
situation and has medical experience…Our people forget that we’re human and have
feelings…they need to understand that their patient isn’t the only one who needs help,
they should be patient and never expect everything to happen rapidly”.
Normally, sitters are not allowed to stay with their critically ill patients in the ICU, but a
mother of the patient found herself facing the responsibility of making the decisions for her son
because she was allowed to stay with him in the room as a sitter for the patient. She stated that
“since I’m the sitter with him, there were times when they asked me to decide on that moment”.
A brother of a patient who lives with him in Jeddah said, “I’m the only one who lives in Jeddah
with him, all our family are in Riyadh, his two sons are studying in the US”.
Another example of social obligations was reported by a participant who mentioned that
“my other brother who was supposed to sign the consent but told he couldn’t because if he signed
it and something went wrong, it’ll seriously affect him, so I got worried about him and took the
responsibility to sign it”. One participant considered it his responsibility to sign the consent for
because of his order in the family saying that “I signed the consent form being the eldest son in
my family”.
Theme # 8: psychological responses of decision makers. The emotions and feelings
expressed by the participants in this research were widely varied in their description, intensity and
onset before, during and after making decisions Some of the participants were strong and
confident in their reaction to what the doctors said to them about their loved ones, whereas some
were fragile and were emotionally impacted.
Before decisions were made. One subject was the oldest son of the patient had a fear of
losing his father. He said that “to be honest, in short, I’m worried about losing him”. A mother
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said that she had to refuse permission to the doctor while upset. She stated that “I was shaking
from inside, but I said No he doesn’t need it”.
The diagnosis and prognosis of the patients were surprising and shocking to some of the
participants. For example, a female decision maker said that “I was shocked yesterday when the
doctor told me they needed to do an urgent amputation”.
After decisions were made. After making the decisions, participants varied in their
attitude and feelings regarding the patients’ outcomes. Twelve of the participants reported their
satisfaction with the outcome. Whereas, some others even with their acceptance of the situation,
expressed their anger or sadness about the patients’ situation at the time of the interview. These
feelings were related to the fact that the patient deteriorated, and the expected outcomes were not
achieved. He said that he became hesitant and skeptical of making other decisions for his brother
and said that “I became afraid about making decisions”. Some were relieved just after they
signed the consent, while others had to rethink the whole situation and stayed worried until after
the procedure was successfully performed. Some took the full responsibility about the patients’
outcomes while others thought that the doctor should take the full responsibility regarding the
outcomes. Some participants they only felt relieved after the procedure was performed and the
patient became better or at least was in a stable condition. One said that “by then I felt relieved
and took a nap at my office”, while another said that “I only was relieved a little when he got the
procedure done”.
Anxiety and worry were reported from the majority of the participants as a result of the
burden from the responsibility of making serious decisions. One said, “that worried me a lot”,
while another female participant said, “I was scared anxious and worried”. Sleep was
compromised for several participants. One said that “although I had to work the next day, I
stayed up the whole night with my phone by me and whenever it rang, I jumped.”. They reported
their inability to sleep. One person said that “I couldn’t sleep all the night” whereas others
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complained of sleeping disturbance after signing the consent. One decision maker described her
emotions after the signing the consent as “I was crying under my veil”.
The experience of anxiety and worry continued with some of the participants when the
procedure they signed for was delayed for one or more times. “The procedure was postponed
several times and I was worried all that time”. Some of the participants were relieved after
making the decisions and some continued to be worried. A female decision maker who was
responsible of making decisions for her brother in-law said, “the ischemia occurred on the same
affected side, which relieved me a bit and alleviated my pain”. One participant felt better after
signing the consent and said that “after signing the consent, I was relieved there was no more
stress”. Another person expressed his anger after the decision was made longtime ago because of
the decision he made for tracheostomy insertion resulted in a lot of harm to his mother. One
person said that “…there was no weaning and her diaphragm muscles became weak and now
she’s dependent on the ventilator. This is what makes us angry”.
Mixed feelings were also reported by some of the participants and some mentioned their
inability to describe their feelings at all. A mother described her feelings after refusing a
procedure for her daughter by saying that “I had mixed feelings, I said no she won’t make it”.
Another participant admitted his feelings because it was his mother. He said that after “all of that,
I have mixed feelings because at first, she’s a mother so for sure (sigh) and many thoughts I had
mixed and multiple feelings”. Another one said that “I can’t describe my feelings, she’s my
mother and a cancer patient”. The nature and the strength of the relationship between the patient
and the participants, made it very hard for some of the participants to accept the patient’s
condition or the decision.
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Some of the decision makers reported that they had to hide their emotions from their
patients to prevent from worrying them and said that “I was trying to hide my fear and anxiety”.
Other participants had to simplify the procedure when explaining it, so the patient would not be
scared. A few participants had to keep the decision secret and not tell their families thinking that,
if something went wrong, the patient or their families would blame them.
Theme # 9: experience of making decisions for the same patient or another patient.
The experience of the decision makers varied among the participants. Four of the decision makers
had positive experience of making serious decisions to self, the same patient or another relative.
One participant who had to decide and sign the consent for tracheostomy insertion for his sister,
mentioned that he did not make the decision without personal experience. His nephew had the
same procedure before when “he was in coma and we had it done for him”. Some were exposed
to this experience several times. One said that “yes I had to make several decisions one of them
was the insertion of a tracheostomy”, while and another said, “we went through several
experiences and I was involved in serious decisions”. People who were exposed to making
decisions had either done that several times or only one time at the past. The previous experience
was reported to either being related to the same patient or somebody related to the decision
maker. Even with the previous exposure, the participants reported that their experiences were
different depending on the nature of their relationship with the patients. For example, one
participant reported that she had to make health-related decisions for her critically ill aunt. She
said that “I had to make decisions for my aunt when she was hospitalized in the ICU before, but
when it is my father, it is different”. As mentioned above, the exposure experience was different
from one participant to the other one and their response and attitude were according to this
exposure and their relationship with the patient. Several other decision makers had never been
exposed to the responsibility of making health-treated decisions for somebody else.
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Theme # 10: regret after decision. The experience of regret was indirectly assessed
through the qualitative data collection, however, the primary investigator avoided using the regret
word to minimize any influence on the participants. Only two participants verbalized their regret
of the decisions they had made for their patients. The son of the patient who demonstrated severe
regret said, “I wish they didn’t do the opening…I regret that”. The brother of the patient who
scored moderate regret on the scale said, “maybe I took longer time than it should be before
taking him to the hospital”. The remaining participants did not explicitly express regret, but
around six of them demonstrated some expressions that might be related to regret such as deep
sighs, change in the voice tone when talking about the decision, sad face expressions, and body
language during the interview.
Quantitative Data Analysis
The quantitative data was analyzed using the SPSS software. The Decision Regret Scale
(DRS) is a five-item paper self-report survey (Brehaut et al., 2003; Hickman et al., 2012a;
Hickman et al., 2012b). Participants were asked to relate to an actual decision that they have
made for a patient and then respond to each item on a Likert scale rages from 1 (strongly agree), 2
(agree), 3 (neither agree nor disagree), 4 (disagree) and 5 (strongly disagree) (Brehaut et al.,
2003).
The analysis demonstrated that twenty-three of the participants (8.8%) scored in the no
apparent regret segment. Nine participants (26.5%) reported a mild level of regret and one person
who represented 3% of the total participants showed a moderate level of regret. Lastly, only one
person (3%) reported severe regret. Of those people who reported severe regret, one reported that
the decision was made two years and a half ago. Another one who scored moderate regret,
reported that he made the decision five weeks ago from the time of the interview. Most of the
responses reflected low regret score. The majority (70%) scored in the no apparent regret (0-25),
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a mild regret was the most common among the participants, moderate regret was less, and high
regret was rare and occurred with only one participant (2.9%) (Figure 6, 7).
Non-direct relatives to the patients and the legal surrogate decisions makers were least
likely to report regret after the decisions they had made. Siblings were the next least likely to
report regret about decisions they had mad for their patients. Parents who were decision makers
demonstrated the lowest level of regret, and highest regret was seen among the sisters and
brothers of the patients. Male participants demonstrated more regret after decisions they had
made for their critically ill patients, while females in this sample fell in the no apparent and mild
regret segments.
Figure 6. Average decision regret score.
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Figure 7. Average decision regret score.
Triangulation
The integration of the results was performed by connecting the results from both the
qualitative and the quantitative data provides the decisions experience and the decision after
regret for the families and the surrogate decision makers of critically-ill patients in Saudi Arabia.
The male decision maker aged between twenty-six and thirty years old who held a college degree
with a monthly income between ten thousand and twenty thousand and had to make two decisions
for his critically-ill strong bonded brother reported a moderate level of regret for his decisions.
He blamed himself and reported his hesitation for making any decisions for the patient or self in
the future. He reported his demand for longer time when making decisions. A son with a strong
relationship with his mother older than forty years old had a high school education and his
monthly income ranged between ten and twenty thousand Saudi Riyals made more than two
serious decision which were severely regretted. The patient’s outcomes did not meet his goals
and he felt physicians misled him and never gave him the whole information about the
consequences. These two regretting decision makers were from two different sites one from
KFMC and the other one from KSMC respectively. The remaining thirty-two participants in this
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study from both genders with various level of education and earned a wide range of monthly
income all described strong relationships with their patients. They reported that they were
exposed to making serious decisions for critically ill individuals who were mainly family
members. They also reported different levels of regret after decisions from no to mild regret on
the Decision Regret Scale. Furthermore, they reported relatively shorter periods of time after
making their decisions than the two persons who regretted their decisions after thirty-five days
and nine-hundred sixty days respectively
Summary
The results from both strands were analyzed using SPSS for the quantitative research
section and thematic analysis for the qualitative research strand. The average decision regret
score for each of the participants was calculated and compared with the relation to the
demographic characteristics and the responses in the interviews from the quantitative research
section. Ten themes had emerged from the analysis of the transcripts from the interviews. Also,
several figures were created to demonstrate the relationship between ADRS and the various
demographic characteristics of the participants.
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Chapter V
Discussion and Recommendations
Introduction
This chapter will present a discussion of the findings and make recommendations for
research, practice, and policy.
Research Question-1: What is the lived experience of being responsible for making
health-related decisions for critically ill individuals in Saudi Arabia?
Research Question-2: Do the family or surrogate decision makers for critically ill
individuals will verbalize regret of their decisions after making them?
Research Question-3: Do the family or the surrogate decision makers demonstrate regret
on the Decision Regret Scale?
The current research study was conducted in an attempt to answer the above research
questions. All the questions were examined through the quantitative and qualitative research
components of the mixed methods approach used by the researcher.
Theory
In the current study, the researcher used Goal Attainment Theory which was developed
by Imogene King in the 1960s. The patients’ outcomes were considered to be the goal that the
decision makers and the care providers had either agreed on achieving or at least had understood
each other’s opinion The Goal Attainment Theory considers three levels of interaction for human
beings personal, interpersonal and social levels. The Personal Human Interacting Systems
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considers an individual as an open system who interacts with the surrounding environment. The
Interpersonal Human Interacting Systems represented the interaction between two individuals or
more and their communication results in them building perceptions about one another. The
interaction is affected by several other concepts such as role, transaction and stress. In the current
study, the interaction between the decision makers and the care providers is used to achieve
desired patient goals. The Social Human Interacting System reflect the interactions between large
groups of people in a certain society and form large organizations such as hospitals.
The Goal Attainment Theory was used to provide guidance for the research. It
considered the decision-making process as the process for setting patients’ goals who are not able
to make decision related to their health by themselves.
Emergent Themes
Theme #1 alhammdullilah… role of the religion. This theme was the most frequently
expressed by almost all participants at least once during the interview. Alhammdullilah, is an
expression that is very common among Muslims which means praising and thanking Allah for
everything and stating acceptance and submission for everything that happens in one’s life. It is
also a common response for anybody who asks about one’s life and health. Thanking Allah and
accepting the fate is a form of worship to Allah. Islam undoubtedly plays the strongest influence
on the peoples’ lives in Saudi Arabia. Faith is obviously expressed in their daily lives (AlHaqwi
et al., 2015; Obeidat, Shannak, Masa’deh, & Al-Jarrah, 2012; Obeidat et al., 2013). Islam means
entire submitting to Allah entirely (The Almighty God) by confirming externally and internally to
Allah’s law (Al-Shahri, 2002; Bloomer & Al-Mutair, 2013). The data from the current study
supported literature about Saudi Arabian families that is the basic component of social life (Al-
Shahri, 2002; Halligan, 2006; Obeidat et al., 2013).
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From the data collected in this study, almost all the participants referred all the situations
to Allah’s will; they all believed that whatever happens comes from Allah. They also were sure
that they must do everything they have to do in their daily lives but then they will also accept any
outcome happens after making the decisions.
There are several religious and cultural commitments that may distinguish the lifestyle in
Saudi Arabia compared to other places worldwide. Muslims strongly believe in Allah and that he
is the source of supremacy over everything (Alsairafi, Taylor, Smith, & Alattar, 2016). All
participating individuals mentioned that they entrusted Allah with guiding their decisions and
other aspects of their lives; they also believed that they must try their best to get what they wanted
in life. However, they also believed that even with the maximum amount of effort, only what
Allah permits will take place. The current study supported the literature that describes how Islam
influences people’s daily lives. They believed in the submission to Allah and accepted what
happened to their loved ones. They believed that the patients were in Allah’s hands, and that He
has the control over everything in this universe.
Many of the participants mentioned fatalism and how the course of life was inevitable.
Muslims believe in fatalism which refers to the belief that Allah controls and predetermines all
what happens to human beings and people have no control on that (Alsairafi et al., 2016).
Numerous participants mentioned that they prayed Istikharah before making their final decision.
Some had asked the physician to give them time for that, where others just did it without
specifically informing the physician. This theme is an important element of the Personal Human
Interacting Systems of Imogene King. It reflects how the Muslim individuals interact with their
surrounding environment under the influence of their own perceptions and beliefs. It affects the
way they interact and respond during stressful situations such as having a critically ill loved one
who is in the ICU. The interaction on the Personal Human Interacting Systems will also affects
the Interpersonal and the Social Human Interacting Systems. Religion may affect how Muslims
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interact with others when setting goals for their loved one. The Social Systems will also be
influenced under the values and rules of Islam. As the data shows that terminating a critically ill
person’s life is prohibited in Islam.
Theme # 2 Istikharah. Istikharah has been mentioned in more than one place in the
literature. Because of their submission to Allah, Muslims were encouraged by their Prophet
Muhammed (PBUH) to perform Istikharah prayer whenever they have to make a decision and
choose between two or more options (Hafiz, Ullah, Wajeeh-Ud-Din, & Niaz, 2014). The
Istikharah prayer was a fundamental step for the majority of the participants, and they strongly
believed in its purpose.
O, Allah, without any suspicion, I want good by your knowledge, I want hold by your
hold and I request you for your blessings, why because you are all mighty and I am
helpless, and you know each and everything while I don’t know anything. As far as
hidden knowledge is concerned you know the hidden knowledge too. O, Allah, if this is
favorable for me, give it to me, and make it easy for me with your blessing. If this very
work is not in favor of me then don’t give it to me and revert me from it, and if it is good
for me, give it (khair) to me and make me agree with it (Hafiz et al., 2014, p. 113).
Hardship was believed to be a sign for Allah’s acceptance and considered a test from him
to test their patience and the harder the situation, the greater the rewards they get. The participants
of this study believed that whatever comes from Allah is good. Muslims strongly believe on the
narration from Prophet Muhammad (PBUH) when he said “no fatigue, no disease, nor sorrow,
no sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a
thorn” (Al-Shahri & Al-Khenaizan, 2005, p. 432). It is also said that when people get sick, they
receive rewards as much as the suffering they experience. Many of the participants either recited
Quran over the patient or brought somebody else to do recite it. This supports what is in the
literature about the belief in spiritual healing that is common among Saudis and Muslims. Al-
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Shahri (2002) argued that the fundamental modality of treatment is reciting certain verses from
the Quran and certain narrated sayings of Prophet Muhammed (PBUH).
Regret was not reported frequently, and this could be because of the acceptance and the
submission to Allah’s fate. The two participants who reported severe and moderate regret, were
among the participants who did not mention praying Istikharah. Usually Muslims may consider
regret as rejecting fate and being not faithful to Allah.
Theme # 3 comprehension of information and attitude towards received
information. Several numbers of the participants expressed their need for better communication
with the physicians and clearer information about the situation. This supports what was reported
by Mobeireek and colleague (2008) who states that communication was a common cause for
several complaints against physicians. In the current study, several participants reported their
dissatisfaction with the communication between the critical care staff and themselves. Data
reported that even though many families were highly satisfied with the overall care provided, they
were dissatisfied with the informational support they received because the staff gave short
answers, were inconsistent in their answers or were rude to them (Wong et al., 2015). Williams
(2001) advocated that communication was a key concept that requires considerable consideration
in emergency departments. Emergency departments are busy places with fast turnover; nurses are
often accused of being busy by their patients (Williams, 2001). In critical care units, nurses and
physicians are also busy and may do not have enough time for communicating with patients’
representatives. Studies had shown that patients families’ level of satisfaction regarding the
communication and emotional support was considerably low (Carlson et al., 2015). People are
more aware of available resources for information when physicians were not available. They
used Google and asked relatives, friends or strangers for medical information. This can be
harmful, especially if proxies asked unprofessional people, those who depended on their personal
experience, or from a story they have heard which may be a real or a fake story. The findings
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supported previous literature that the clearer and more adequate information provided to the
patient’s family, the higher the satisfaction they receive, which assists them in making
appropriate decisions for their loved ones (Al‐Hassan & Hweidi, 2004). Ambiguity creates
stressful experiences for the patients’ families (Carlson et al., 2015; Frivold et al., 2018; King,
1981; Williams, 2001).
The data in this research study showed that the majority of the participants did not
demonstrate regret of their decisions, even though some of them reported their unhappiness with
the communication between the nurses and physicians in the ICU. The only two people who
reported high and moderate levels of regret, did not mention communication with the staff as a
contributing issue to their experience of regret. They both mentioned their understanding of the
information they received before making their decisions.
Theme # 4 gender issues in decision making in Saudi. The decision-making process in
Saudi Arabia was clearly influenced by cultural and social factors (Al-Shahri, 2002; AlHaqwi et
al., 2015). Women were less inclined to take the responsibility for making decisions, which can
be supported the findings of (AlHaqwi et al., 2015). However, women were more able to express
their feelings openly and describe the situation better than males during the interviews. Males
expressed higher level of regret than females did when answering the questionnaire. Females
expressed more feelings during the interview than males, while males had higher ADRS than
females. This might be due to the fact that the researcher was a female and males might have
found it difficult to vocalize their feelings when being interviewed compared to answering the
questionnaire independently. When some females were approached during the recruitment, they
believed than their male close relative should be the one to participate in the study. They said
that their male relatives are the ones responsible for making any decisions for their patients.
Some of the females, who were asked about their experience of making decisions, believed that
males are supposed to make all decisions.
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The literature supports the fact that males normally lead and represent their families in
Saudi Arabia which explains why most of the participants were males (Al-Shahri, 2002; AlHaqwi
et al., 2015). However, Al-Shahri (2002) argued that female family members can influence the
final decision made. Males may delegate themselves and consider themselves the surrogate
decision makers by default with no delegation from the patient. Thus, fathers, brothers,
husbands, or sons were the decision makers for the patients in this study. Most of them did not
have a legal authorization for making the medical decisions on behalf of the patient. Also,
respect for people who are older in age is culturally and religiously valued, so most of the
decision makers were the eldest child or brother if the patient if they were not fathers or
husbands. Due to cultural influences on male dominance, one male participant from an Arabic
country other than Saudi, was sure that he would be the decision maker, even if the patient was
alert and able to make his/her own health-related decisions.
In the current research study, none of the female participants reported regret of their
decisions, and the two participants who did regret their decisions were male participants. Due to
the sample size, findings cannot be generalized about the relationship between the gender of the
decision maker and their experience of regret after health-related decisions. The researcher of the
current study did not ask the female participants who were confident in their role about their
background of if there were any social or other factors that resulted in their attitude toward regret.
Furthermore, the data from this research did not test if there is a relationship between the
gender of the decision makers and the gender of their patients and if that may influence their
perception of regret.
Theme # 5 the burden of the responsibility. Almost all the participants described their
experience as being difficult and challenging except one female decision maker who said it was
good to do something for her father. Some reported their lack of medical background knowledge,
which aggravated the issue. When multiple options were given to these individuals with the goal
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of selecting appropriate decision, decision making was quite difficult. The availability of many
alternatives can aggravate the situation and makes it harder for the person to decide (Redelmeier
& Shafir, 1995). The decision maker may become unable to successfully compare between their
own opinion and the advice provided to them (Yaniv & Kleinberger, 2000). A participant
mentioned that he tended to delay his decisions and sometimes avoided it when his brother had
become sicker. In the literature, some people, when provided more than one option, may
intentionally delay or avoid making the decisions (Redelmeier & Shafir, 1995).
Because it was related to the life of someone else, decision makers in this study reported
their need for emotional and informational support. However, the literature showed that patients’
families reported a lack of support, which may have worsened their experience of decision-
making. Participants also wished that they had a longer time to think and decide properly (Scott
et al., 2014).Participants who were completely satisfied with the outcomes did not all agreed on
the difficulty and the burden of the responsibility of making health-related decisions for another
individuals.
Theme # 6 perception of care provider and communication. King (1981) stated that
interaction is a core concept for setting goals and all means that are needed for meeting those
goals. The interruption in this may lead to failure to meet patient’s goals and regret may occur as
a result.
In the current study, nurses of the participating critical care units were reported as having
less active involvement in the decision-making process than critical care physicians. They were
not considered to be part of the decision-making process, as reported by most of the participants.
No available literature was found which shows active involvement of the nurses in the decision-
making process and transaction in Saudi Arabia. The participants thought that nurses were either
unqualified to participate in decision making or that they are too busy to assist them in choosing a
treatment option for their loved ones. This supports the literature findings that several patients’
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families considered nurses unable or reluctant to provide them with the information they needed
(Wong et al., 2015). Some nurses perceived their lack of power and authority for participation in
that process for their patients. The felt that they lacked the professional rank or status to
participate in that process. They believed that they were not authorized to give any information
about the patients or participate in helping the family or the surrogate decision makers while they
were making serious decisions for their patients. There was a remarkable misunderstanding and
underestimation of the nursing role in of nurses the critical care settings in Saudi Arabia.
One participant reported that he only approached Saudi nurses when had a question due
to the language barriers. Language barrier can play a role in the failure of communication
between nurses and families or surrogate decision makers. That is because, as stated in the
literature, 73.1% of the nurses in Saudi Arabia are expatriates from various countries who mainly
speak and communicate in English (Almalki, Fitzgerald, et al., 2011a; Almalki, Fitzgerald, &
Clark, 2011b; Lamadah & Sayed, 2014). Those nurses use their work in Saudi Arabia as a
temporary stage for more financial, personal and professional justification to move to counties
with strong economies like Canada, United States of America, and United Kingdom (Almalki,
Fitzgerald, et al., 2011; Lamadah & Sayed, 2014). Studies have shown that there is a positive
impact from speaking Arabic in the communications between the Saudi nurses and their patients
compared to when nurses speak languages other than Arabic with their patients (Almalki,
Fitzgerald, et al., 2011; Lamadah & Sayed, 2014). They confirmed that families demonstrated
higher satisfaction when they were able to communicate with the care providers in
understandable manners. The perception of the decision makers about the care providers and the
perception of the care providers regarding the decision makers will influence the way they
interact with each other and can affect the transaction between them and the setting of the patient
goals.
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In the current study people who regretted their decision did not necessarily relate their
experience of regret to their inability to communicate with the ICU physicians or nurses. The
participant who showed moderate regret, mentioned the ICU nurse’s active role in his decision
for inserting central line catheter for his brother. The other participant who severely regretted his
decision of approving the insertion of a tracheostomy for his mother reported his active
communication with the staff as well.
The general attitude perceived from this study was the spontaneous trust of the doctors
and their opinions. Those people were very satisfied and trusted what the physician had told
them about the patient’s condition. Some participants were confident that physicians would not
make mistakes that harm their patients because that would negatively impact the doctor and his
profession. However, there were a few participants who did not trust the physician and either
refused to approve a procedure or tried to search for more information through various sources,
such as Google, friends, and other patients’ families in the unit. In the literature, there was no
particular study that looked at the attitude and perception of decision makers regarding critical
care physicians in Saudi Arabia.
Theme # 7 influence of perceived pressure. Making critical decisions can be a stressful
situation and when making those decisions for another individual, decision making is even more
challenging. In the current study, the source of pressure varied in the participants’ responses.
This supports what is in the literature about the pressure and anxiety that are experienced by the
families and the decision makers of ICU patients. They reported several reasons for their
perceived stress including time, situational circumstances and social stressors.
Theme # 8 psychological response. Due to the difficulty of the experience of making
decisions, the participants varied in their psychological response to the situation. Fear, anxiety,
hesitation, feeling lost, worried, shaking, and experiencing sleep deprivation were all response
that were reported in this study. The intensity and the duration of those responses also varied.
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Some were relieved after signing the consent form for the procedure, and some continued to
experience emotional distress until after the procedure was done. Some continued to have
concern about the decisions they have made until the time of the interview. The people who
reported regret were emotionally impacted. They reported severe and deep agony from their
decisions due to the deterioration in their patient’s condition.
The balance of the psychological status for the decision makers is an important
component in setting goals, agreeing on how to attain these goals, and finally, the ability in
evaluating the patients’ outcomes. Psychological stability may affect the decision makers’
perception and understanding of regret.
Theme # 9 experience of making decisions for the same patient or another patient.
Being responsible for making decisions several times was a positive experience for some of the
participants, as it helped them when making other decisions. However, some participants argued
that being exposed to the experience varied according to their relationship with the patient.
Theme # 10 regret after decision. Regret was not commonly reported in this study, and
this may be due to two possible reasons: 1) All the participants were Muslims and a part of the
religion is the belief that all afflictions come from Allah and nothing will stop things from
happening including death if Allah willed it; and, if they regret the decision, that reaction might
be interpreted as not accepting Allah’s will. 2) All of the participants had to make a serious
decision for someone else, whereas some of those decisions were too soon to be evaluated or to
report possible regret.
People who demonstrated regret had a considerable period of time after making the
decisions. They did not claim information inadequacy but reported self-blame due to the
complications their patients developed. Gender was not a significant indicator for regret after
decisions for critically-ill individuals. However, regret was more commonly reported among
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male participants than females. So, to effectively assess regret after decisions for critically-ill
individuals, the time from making the decision should be considered as an important factor.
Many of the participants who showed low or no regret reported their dissatisfaction regarding
their communication with ICU nurses and some physicians. Considering the Interpersonal
Human Interacting Systems, this represent a noneffective interaction and as a result, an
unsuccessful transaction occurring between the participants and the ICU physicians.
Muslim Culture
The data showed that the concept of visiting sick persons is highly recommended in
Islam. However, this was clearly true during the data collection, where patients had many visitors
and sometimes it was a challenge to find the primary decision maker for that patient. More than
one visitor might consider himself or herself as the closest individual one to the patient and offer
their willingness to enroll in the study, but what made them suitable to participate in the study
was their exposure to making serious decisions. Some of the visitors had actually travelled many
kilometers just to visit the patients.
The decision-making experience might be different for Muslims than for non-Muslims
because of their belief in fatalism. Because of this submission, Muslims were encouraged by
their prophet Muhammed (PBUH) to perform Istikharah prayer whenever they have to make a
decision and choose between two or more options. The Istikharah prayer was a fundamental step
for the majority of the participants, and they strongly believed in this prayer. Culture and religion
had an important role in the experience of making decisions for the participants. Nurses and
physicians must consider those important aspects when interacting with a Muslim person and
how those values may affect their responses to stressful situations. For example, Istikharah is
considered a fundamental practice whenever making decisions. Understanding that concept
among the critical care personnel may result in better interactions, which then lead to a successful
transaction between the patients’ representatives and the care providers.
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People who reported regret and reported self-blame did not necessarily mention the
Istikharah prayer. This may be because they either did not perform it or thought it was
unimportant to mention it during the interview.
Prediction of Patient’s Response
A strong relationship with the patient which was described by the participants, almost all
but one participant, predicted how the patient might react if they were alert and able to make their
own health-related decisions. Studies show that families who were previously aware of the
patient’s preferences, reported no or less regret of the decisions they made on their behalf
(Hickman & Pinto, 2014). Ability to predict the patients’ preferences regarding the treatment, did
not show a relationship with the occurrence of regret. The only male decision maker who
reported severe ADRS suffered from his decision, mentioned that his mother was alert and aware
when the decision was made. The other participant who scored moderate ADRS, mentioned that
his brother already agreed on the procedure before he became sicker, so he had no other options
to take but to sign the consent form.
Reflection on the Theory
King argued that goal attainment is a process that is composed of many concepts and
affected by many processes. Depending on the findings of this research, several concepts from
the Goal Attainment Theory can be employed and further explained in the critical care settings in
Saudi Arabia.
Perception. The perception of the decision makers towards the critical care physicians
and nurses influenced their action and reactions in their decision-making process. Many of the
participants thought that nurses did not know more than giving daily patients care including
medication administration. This perception may hinder decisions makers from approaching the
nurses with questions and concerns that could help them in meeting their ultimate goals for their
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patients. Many of them claimed their lack of understanding of the situation and difficulty
securing time to interface with the doctor caused them distress. Approaching and asking the
critical care nurses could be a way to reduce this problem.
The perception of the physicians towards the decision makers and critical care nurses
may affected their contribution in the decision-making process of their critically-ill patients.
Improving the perceptions about the nurses and about the decision makers may improve the
experience of decision-making.
Communication. Verbal and non-verbal communication was a core factor in all the
steps and processes in decision making. Effective and supportive communication had positively
impacted the understanding of the situation by the family and surrogate decision makers.
Communication with nurses was not effective or supportive in many cases, which could be
improved by emphasizing the important role of the critical care nurses in the decision-making
process. Communication with nurses was clearly affected by the language barrier since the
majority of the nursing population in the participating intensive care departments were non-Saudi
and non-Arabic speaking staff. This may had contributed to the decision makers’ avoidances of
the nurses.
Status. The position of the physicians, nurses and the decision makers all affected the
process and may have influenced the decision-making process positively or negatively. The
physician’s status in the ICU affected their action and interaction with the decision makers when
those patients’ representatives were unrealistic about their goals.
Organization. “An organization ensures the arrangement of positions and actions”
(King, 1981, p. 15). In this study it was the hospitals, the ICUs and all the facilities where the
interaction between the decision makers, ICU nurses and ICU physicians took place as part of
making decisions on behalf of the critically-ill individuals.
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Stress. Stress was the catalyst of the communication, interaction, and transaction to
finally make decisions. Due to this stress, the decisions makers were prompted to interact with
the care providers and set their desired patients’ goals. This aim made the physicians provide the
possible and available options to the decision makers. Stress should make the decision makers
seek more information from the critical care physicians and nurses or other resource. However,
communication with nurses was not effective in the majority of the cases of this study due to the
language barrier factor. Also, the perception of the ICU nurses influenced the communication,
interaction and transaction between the critical nurses and the decision makers in the participating
ICUs.
Role. The physicians, nurses and the decision makers each of them had set of
expectations behaviors during the decision-making process. Critical care physicians and nurses
were supposed to provide all of the required information and the support that decision makers
may need. The family and surrogate decision makers played the role of making serious decisions
for their critically-ill loved ones. This role was effective in some cases and was not in others,
which have resulted in regret after decision. This have been caused by many factors such as the
miscomprehension of the information or the experiences of mental distress.
Space. The environment of the hospital and the ICUs was where the interaction and
transaction took place between the ICU staff and the decision makers. Due to the stressful nature
of the ICU environment, the transaction between the critical care personnel and the decision
makers was affected and may have impacted the process of setting mutual patients’ goals. Some
of the participating ICU departments had a designated time and space where all the
communication took place. However, some other ICUs did not have a convenient space where
those decisions makers could communicate with the nurses other than in the physician’s office or
at nursing stations, which may have caused more stress for the patients’ representatives.
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Growth and development. The maturity of the decision makers may have contributed
to the comprehension of the delivered information and the reaction and interaction following that.
Age is one of the components from the concept of growth and development concept. Therefore,
younger individuals may not be capable of being responsible for making serious decision for
someone else. This area needs to be further explored for better understanding of the issue.
Time. Time was an important concept in which the decision-making process was
described. Time available for making serious decisions and time after making decisions were
important in assessing the possible regret after decisions. People with longer time after decision
may be more able to describe their experience of making decisions and their possible regret more
than people who had recently made decisions. People who tend to have more information about
the patient’s outcomes may become more capable of describing their experience and evaluating
the possible regret they felt.
Interaction The interaction between the families and surrogate decisions makers with
the critical care healthcare professions was crucial for setting desired patients goals and all the
actions steps required for achieving those goals. The interaction needed to be effective and
purposeful in order to attain the desired goals. Interrupted interaction between the decision
makers and the care providers may have affected the decision-making process.
Transaction. The successful and effective interaction between the decision makers and
the critical care professionals demonstrated the transaction process. Any interruptions in this
process may result in not meeting goals or in decision regret.
Goodness of The Study
Credibility. The credibility of the current study was assured through triangulation
because there was not a chance to do member check due to the nature of the settings. The
limitation of time spent with the participant was either because the participants lacked adequate
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time for another interview or due to the limited visiting hours of the critical care departments in
the participating hospitals.
Dependability. The dependability was obtained through different strategies. First,
another researcher reviewed the coding book that was created by the primary investigator. The
researcher reread the coding book and the short and ling definition of each of the codes. The
second step required the academic advisor of the primary investigator to recheck the coding book
and the interpretation. They approved the interpretation and made some suggestions.
Recommendations
Research
This research project will provide a base for conducting other research about decision
making in critical care and other hospital departments in Saudi Arabia. It will also benefit the
Arabic nursing database. The findings from this study can aid the design of future studies with
more focus on decision making in critical care settings in Saudi Arabia.
Future research focusing on regret after decisions in critical care settings might need to
measure or assess the level of regret during at least three different points in time following
decision-making onset. By testing initially at the time of decision, six-months after the decision
and one year after the decision, better evaluation of the outcomes resulting from the decisions
might be made. This is because the two persons who demonstrated regret as high and mild, had
made their decisions at 35 and 960 days respectively.
In spite of the fact that most of the critical care providers focus on their patients’
conditions and needs, not enough studies exist which explore the needs for families and decision
makers who represent the critically-ill individuals. There is a great demand for research studies
that help in understanding how the family and the surrogate decision makers feel. Understanding
the needs of this population will help in improving the quality of care provided to the patients
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themselves. The Saudi Nursing Database has minimal resources and needs great attention from
Saudi nurses. As a Saudi nurse, there will be other research studies that will utilize the findings
from this study to better understand the experience of decision-making for the family and
surrogate decision makers in critical care settings in Saudi Arabia. Findings from this study
revealed a possible relationship between the length of time after making the decisions and the
possible regret. A collaborative multidisciplinary approach may need to be employed when
assessing regret after decisions, that is, to include critical care nurses and social workers more in
the decisions. The demand of support from the participants in this study, suggests better protocol
should be created the decision makers’ concerns. Meeting their concerns will ease their decision-
making trajectory, which may result in better achieving of patients goals.
Future research studies need to consider having female and male interviewers. This may
help the participants, especially males, to be more openly willing to express their feelings and
emotions regarding their experience with making serious decisions for someone else. The results
of this study, it showed that women were more willing to express their emotions and thoroughly
describe their experiences as compared to male participants who seemed may uncomfortable
talking about their experiences and regret after decision making for a female interviewer. Also,
future researchers should consider recruiting a relatively equal number of decision makers from
both genders to have better comparable findings between the two groups and within the social
system.
Practice
Critical care nurses were not actively involved in many of the decisions made for
critically-ill patients in the participating hospitals. Nurses need first to be prepared for
participating in helping the decision makers to make the right decisions without influence.
Nurses’ participation can be very valuable for the decision makers and for the patients’ outcomes.
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Decision makers’ satisfaction with the support they might receive from the nurses and other care
providers will assist them in deciding properly to meet the desired patient outcomes.
Meeting the needs of the family and surrogate decision makers will hopefully create a
less stressful environment within the critical care settings. Lowering the stress and providing
more comfortable environment will assist the decision makers to better understand the situation
of their patients and comprehend the information they receive from the physicians and other
critical care personnel. The nursing profession composes the largest portion of the healthcare
providing professions in Saudi Arabia, yet, only 29.1% are Saudi and local nurses while the
majority are expatriate nurses from more than fifty-two countries worldwide (Almalki, Fitzgerald,
et al., 2011b, 2011a; AlYami & Watson, 2014; Lamadah & Sayed, 2014). These nurses usually
communicate in English and are not proficient in Arabic. This can affect the communication
process between their patients, families or surrogate decision makers and prevent them from
approaching nurses with questions they may have (Almalki, Fitzgerald, et al., 2011b; AlYami &
Watson, 2014). This may also drive them to depend only on the information they receive from
the physicians and or to reach out to non-professional people to consult them rather than asking
the nurses in the unit. There must be Saudi and Arabic-speaking nurses in the critical care
settings to close the current gap in the communication and interaction between the nurses and the
decision makers
Nurses are the care providers who spend the most time with their patients and may better
understand their patients’ needs. Physicians should be more trusting of the nurses’ skills and
involve them more with the decision-making process for the critically-ill patients. However, even
though the critical care bedside nurses have a large workload caring for their patients and may not
have adequate time to participate in helping the decision makers decide what is best for their
patients. They need to perceive this involvement as a core duty and as a part of advocating for
their patients. The hospitals’ administrators need to be willing to include that in the critical care
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nurses’ job description. Improving the role of the nurses and especially the critical care nurses
will empower their status with in the hospital, which is represented in the Social Human
Interacting Systems by Imogene King. Yet, advanced practice nurses, such as clinical nurse
specialists, can successfully participate in the decision-making process and help the decision
makers understand and comprehend all the information they receive from the providers. In Saudi
Arabia, the role of advanced practice nurse is still evolving and is not well-defined.
The Decision Regret Scale has been mainly used for patients with cancer, menopause and
hormonal therapy (Becerra Pérez et al., 2016; Hickman & Pinto, 2014). It was basically used for
patient populations, but not with families of patients or surrogate decision makers who make
decisions on behalf of other individuals. It will be useful to help understanding how decision-
makers responsible for making serious health-related decisions fill out the scale when actually
making those decisions for people other than themselves in a clinical setting.
The researcher of this study obtained the appropriate permission and systematically
translated the DRS into Arabic Language for the first time. The Arabic version of the DRS will
help encourage other Arabic nursing and non-nursing researchers to use it to with various
population in Saudi Arabia and other Arabic countries.
Policy
The findings of this research suggest that the Saudi Ministry of Health (MoH) should
acknowledge the importance of advanced nursing practice in health care settings. That is,
involving advanced practice nurses in the decision-making process may help in lowering the
workload of critical care nurses as well as physicians. There is a strong demand for advanced
practice nurses in all hospitals. Nurse practitioners as well as clinical nurse specialists will
participate in the remarkable transformation that is currently going on as part of the Saudi 2030
Vision that is guided by the Crown Prince Mohammed bin Sallman (MBS). There is a significant
116
dependence on non-Saudi and non-Arabic speaking nurses in the participating critical care units.
Yet, there is a great demand for Saudi nurses to cover the massive shortage in the hospitals in
Saudi Arabia to mitigate the language barrier between the expatriate nurses and their Arabic-
speaking patients and their families. Nurses may also be willing to participate with the decision-
making process more openly when they speak the same language.
The Ministry of Health will need support from the Saudi Commission for Health
Specialties (SCHS). The SCHS is supposed to approve and accredit the advanced nursing
practice. The commission must provide all of the qualifying strategies to provide skillful,
professional advanced practices nurses. Nevertheless, Saudi nursing schools, the Ministry of
Health, and research funding agencies must collaborate in providing opportunities to nursing
researchers to conduct studies that will provide a strong basis for the Saudi Nursing Database and
participate actively in meeting the objectives of Vision 2030 objectives. Policies must be
generated for all MoH hospitals and private sector hospitals to employee a large number of
qualified Saudi nurses and proportionally exceed the number of the non-Saudi, non-Arabic
speaking nurses in all departments, especially in critical care settings.
Limitations
There are several limitations to the current study that need to be pointed out for
evaluation and future research studies in the same field. The number of participating subjects was
considerably small for considering reliability and generalizability of the results. The number of
male participants was almost double the number of female participants which may not correctly
reflect the attitude towards reporting regret after decision making based on gender. There could
be a bias due to the fact that the researcher was a female who interviewed males who might find it
difficult to vocalize their feelings, whereas it was easier for them when answering the
questionnaire. The literature shows that regret may change over time depending on many factors.
The research here mainly involved people who had recently made decisions and may not yet be
117
able to accurately evaluate the results of those decisions. The participants’ evaluation about their
regret following decisions they have made might be affected by many factors such as previous
medical knowledge and understanding which was not particularly tested in this study. The study
was conducted in large cities which may or may not be generalized to people who dwell in small
cities and villages of Saudi Arabia.
Family and surrogate decision makers may experience devastated feelings and be unable
or unwilling to share their experiences or express their feelings. Studies showed that the
expression of regret after decision may vary over time or from situation to situation. Some
studies suggested that regret should be measured over a period of time and not as a singular
occurrence. The DRS also might be useful to assess it after at least six months of the decision to
get a more accurate evaluation of the individual’s thoughts on their experiences.
A potential bias exists because the word regret in the name of the Decision Regret Scale
may prime or indirectly affect participants. Another perceived limitation of this study is that
there was no Arabic version of the Decision Regret Scale. While the DRS was translated into
Arabic using accepted methods, there are cultural differences between the Western and Eastern
people and these differences may affect the generalizations of the findings from the study.
The study was conducted in four different hospitals, and even though they are all
managed under the Saudi Ministry of Health (MoH), there might be some variations in the
policies between the participating ICUs.
Conclusion
The Saudi Nursing Research Database seems to be underutilized, and there is a need for
strong considerations and attention from Saudi nurses. Critical care, as well as other fields in
medicine in Saudi Arabia, is almost comparable to critical care units in Western countries,
however nursing in critical care needs to be further analyzed. Decision making is an important
118
topic when it is combined with the medically related issues. Decision making is a daily
experience that everyone could experience. However, people may not necessarily agree with the
outcomes of all of the decisions they have made. Regret may result from making decisions and
the failure to meet desired goal.
The decision-making process in the health field can be devastating and overwhelming.
Furthermore, making serious or health-related decisions for others is stressful and imposes a large
burden on the people making the decisions. The decisions in critical care settings are a
significant experience. Because these decisions can be life-sensitive, they may result in saving a
patient’s life, lead to their suffering, or even end in their death. The decision makers in these
circumstances can be ignored, and their needs can be overlooked by the care providers. The care
providers usually focus more on their patients rather than of the needs of their families or
representatives. Shedding light on the needs and concerns of the decision makers will help in
setting realistic patients’ outcomes and critical care staff be able to work collaboratively to meet
them. Setting realistic goals for the critically-ill individuals will help in improving their health
status and improve their response to the provided treatment. Regret after decision may be
experienced and never noticed by healthcare providers which may negatively impact the
treatment care plan.
This was the inaugural study used of the Decision Regret Scale with families and
surrogate decision makers of critically-ill patients in Saudi Arabia. The need for future studies in
in such fields is fundamental and will enrich the Arabic and Saudi nursing and medical databases.
However, the DRS may has not reached and tested all the dimensions of regret after medical
decisions for a critically ill person.
The nature of the busy environment of the critical care units can be a challenge for
regular registered nurses to participate in the decision-making process (Blom et al., 2013). Thus,
the findings from this study suggest and insists on the necessity for advanced practice nurses such
119
as clinical nurse specialists in critical care settings, who will positively impact the decision-
making process in critical care settings in Saudi Arabia.
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Appendix A: SMoH to Health Affairs Department in Medina
121
Appendix -B: SMoH letter to Health Affairs Department in Jeddah
122
Appendix-C: SMoH letter to KFMC
123
Appendix-D: SMoH to KSMC
124
Appendix E: KFMC IRB for all
125
Appendix F: KFHM IRB
126
Appendix G: KFHJ IRB
127
Appendix H: KSMC IRB
128
Appendix I: BU IRB
129
Appendix J: DRS (English)
130
Appendix J: DRS (English)
131
Appendix J: DRS (English)
132
Appendix K: Permission for DRS use & translation
133
Appendix L: DRS (Arabic)
134
Appendix L: DRS (Arabic)
135
Appendix L: DRS (Arabic)
136
Appendix L: DRS (Arabic)
137
Appendix M: Translator credentials
138
Appendix N: Amendment 1
139
Appendix O: Amendment 2
140
Appendix P: Amendment 3
141
Appendix Q: Amendment 4
142
Appendix R: Amendment 5
143
Appendix S: Amendment 6
144
Appendix T: Permission from Imogene King
145
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