Nursing Theory alligood 8th edition

582 UNIT V  Middle Range Nursing Theories end of life represent some of the most vulnerable indi-
beyond the concerns generated by physical and cogni- viduals to whom nurses may provide care. Although
tive decline. Other scholars broadened the theory to an abundance of lay literature exists about the devel-
include younger adults with life-limiting conditions opmental and transcendent experiences of end of
that may make them vulnerable to spiritual disequilib- life and dying, there is a dearth of systematic research
rium and depression. Recent studies by Reed and others into this human experience. The Self-Transcendence
have extended the scope of the theory to include addi- Theory guides the initial questions and may undergo
tional populations of adolescent and adult age groups, further refinement as this inquiry progresses.
patients and nonpatients, who may have increased
awareness of personal mortality. Examples are Japanese Other forms of inquiry may occur in reference to the
hospitalized older adults (Hoshi & Reed, 2011), Korean theory, in view of Reed’s reconceptualization of nursing.
older adults and their family caregivers (Kim, Reed, Reed (1997a) has clarified a more foundational defini-
Hayward, et al., 2011), Amish adults in rural Ohio tion of nursing that shifts the source of nursing activity
(Sharpnack, Quinn-Griffin, Benders, et al., 2010, 2011), from that of external agent (i.e., the “nurse”) to a view of
caregivers of older adults with dementia (Kidd, nursing as an inner human process. Specifically, Reed
Zauszniewski, Morris, et al., 2011), low-income older defines nursing as a process of well-being that exists
adults (McCarthy, 2011), older adults patients in within and among human systems, characterized by
Norwegian nursing homes (Haugan, Rannestad, Garåsen, changing complexity and integration. From this, she
Hammervold, et al., 2011), Taiwanese nursing students proposed self-transcendence as a nursing process.
(Chen & Walsh, 2009), bullied middle-school boys Further explorations into mechanisms of changing
(Willis & Grace, 2011; Willis & Griffith, 2010), and complexity and integration should help achieve new
patients with progressive diseases such as multiple theoretical explanations about how self-transcendence
sclerosis and systemic lupus erythematosus (Iwamoto, emerges and functions in human lives.
Yamawaki, & Sato, 2011).
Critique
Diverse personal and contextual variables impact Clarity
the relationship between self-transcendence and well-
being. Although a number of studies have associated Clarity and consistency are key criteria in the descrip-
older age with increased self-transcendence, younger tion of and critical reflection on a theory (Chinn &
research participants have also report self-transcen- Kramer, 2011). Theory clarity is evaluated by seman-
dence views and behaviors and score high on self- tic clarity and structural clarity. Semantic consistency
transcendence measures. During a long or short period evaluates how consistent concepts are used with their
in one’s life, a variety of human experiences (e.g., child- definitions and the basic assumptions of the theory.
birth and parenting, illness and disability, caregiving, Structural consistency involves assessing congruency
creating a work of art or literature, spiritual perspec- among the assumptions, theory purpose, concept
tives) all may evoke the pandimensional views and definitions, and connections among the concepts.
behaviors indicative of self-transcendence. Continued
research into these and other personal and contextual Theoretical sources for development of the theory
factors will increase understanding of the role they are described clearly in several publications (Reed,
play in the theoretical propositions (Reed, 2008). 1991b, 1996, 1997b, 2003). The definitions and as-
Continued development of the theory by Reed and sumptions about the concepts derived from Life Span
others includes further examination of points of inter- Developmental Theory and Rogers’ Science of Uni-
vention to facilitate self-transcendence perspectives tary Human Beings have sometimes been difficult for
and behaviors in persons who express a need for nurses to grasp. Attempting to clarify concepts such
increased sense of wholeness and well-being. As the as health and self-transcendence, Reed presented
Self-Transcendence Theory evolves, nurses learn more slightly varying definitions and numerous examples
about potentials for well-being over the life span. that, although theoretically consistent, may confuse
some readers. In terms of structural clarity, the rela-
Reed received funding to study self-transcendence tionships in the schematic model of the theory (see
as it relates to end-of-life decisions and well-being in Figure 29–1) are more fully defined and described in
patients and their family caregivers. People facing the

Reed’s past and forthcoming writings (Reed, 2013). CHAPTER 29  Pamela G. Reed 583
Structural consistency is good in that the identified
relationships are logical and consistent. generality, resulting in a theory that is applicable in
many situations of health and healing.
It is not unusual to find these issues about clarity Accessibility
in definitions when a theory incorporates concepts How well the concepts of the theory are linked to
that are somewhat abstract. Overall, however, Reed’s observable, empirical reality and to nursing practice
theoretical thinking has remained congruent with the refers to the criterion of accessibility (Chinn and
original Rogerian and life span conceptual views and Kramer, 2011). Although the theory is abstract with
assumptions underlying her knowledge development, concepts of vulnerability, self-transcendence, and
and she conceptualized a theory that can be under- well-being, numerous researchers have identified and
stood by both nurse clinicians and nurse researchers. studied empirical indicators. In particular, measure-
ment of self-transcendence has been honed through
Simplicity the development and refinement of Reed’s Self-
Reed’s middle-range theory is strong on simplicity, Transcendence Scale. Well-being has been measured
with three major concepts (vulnerability, self-tran- by a variety of empirical indicators.
scendence, and well-being). The theory may increase
in complexity somewhat as specific personal and en- Researchers may use different approaches and
vironmental factors and their relationships to the empirical indicators to measure self-transcendence
major concepts are identified in clinical applications. because the concept lends itself to a variety of ap-
The major concepts and the number of relationships proaches and measures that fit the clinical nursing
generated by these concepts are minimal while still context of interest. Research findings that support a
being meaningful and fairly comprehensive. strong relationship among self-transcendence and
well-being, as hypothesized by the theory, attest to the
Generality theory’s empirical precision.
The scope and purpose of Reed’s theory are such that Importance
the theory can be applied to a wide variety of human Self-Transcendence Theory is a middle-range theory
health situations. The purpose of the theory is to en- that leads to valued goals in nursing education, practice,
hance nurses’ understanding about well-being (Reed, and research. The theory, which is grounded in nursing
2008). Initially, Reed’s work focused on developmental philosophy, research, and practice and is tested in re-
resources in persons confronted by challenges of later search, has produced new nursing knowledge that is
adulthood related to indicators of mental health symp- useful in practice. The theory provides insight into the
tomatology, specifically, clinical depression (Reed, developmental nature of humans related to health situ-
1983, 1986b, 1991a). In linking self-transcendence to ations relevant to nursing care. Nurses and patients face
mental health as an indicator of well-being, the scope events that challenge personal mortality. Knowledge of
of the theory expanded to include persons other than developmental resources (i.e., self-transcendence) can
older adults who were facing end-of-own-life issues be engaged for persons to expand nurses’ repertoire
(Reed, 1991b). Continued development and testing of for facilitating well-being in times of vulnerability.
the theory led to the specification of self-transcendence The abstract yet definable nature of self-transcendence
as a mediator between vulnerability and well-being, facilitates development of many interventions that may
and it supported the direct relationship between self- be tested as strategies to promote well-being in a variety
transcendence and well-being (Reed, 2003, 2008). The of nurse-patient encounters.
theory is now broader in scope and more congruent
with a life span perspective, because the major con- Summary
cepts can be applied to anyone confronted with life
events ranging from childbirth and caregiving to Self-Transcendence Theory was developed initially
long-term care contexts, life-threatening illness, and using deductive reformulation from life span devel-
dying. Broadening the scope and purpose of the opmental theories, Rogers’ conceptual system of
theory from mental health to well-being increased unitary human beings, empirical research, and clinical

584 UNIT V  Middle Range Nursing Theories asked him if he thought his wife would have had
and personal experiences of the theorist. The theoreti- a similar experience if he had been the first to die.
cal concepts are abstract, but concrete subconcepts His response was that his wife would have had an
have been developed and studied extensively in a even more difficult time adjusting. The nurse and
number of populations. Research findings support the Mr. Jones then spent some time reflecting on and
hypothesized relationships among self-transcendence talking about his response. The nurse’s initial ques-
views, behaviors, and well-being. These studies in- tion and Mr. Jones’s resulting insight that his grief
crease nurses’ understanding that, no matter how was not as bad as his wife’s would have helped him
desperate a health situation, people retain a capacity transcend his immediate experience of loss and find
for personal development that is associated with feel- some meaning in his grief.
ings of well-being.
This illustration is an example of an inward
Research findings have suggested ways in which expansion of self-conceptual boundaries indicative
nurses promote self-transcendence views and behav- of self-transcendence. Other expressions of self-
iors in themselves and in their clients. Further re- transcendence might help Mr. Jones facilitate his
search is planned to examine interventions promoting own healing and regain a measure of well-being.
self-transcendence and studies of personal and con-
textual factors that modify relationships among the In terms of outward expansion, Mr. Jones, with
theory concepts. In addition, qualitative research ap- some encouragement, might reach out to his son’s
proaches assist in gaining a deeper understanding of family to begin to reconnect to the world outside
the concept of self-transcendence as a nursing process himself. Walking to and from his home to theirs
and as it expresses the depth and changing complexity could expand his sensory world and provide op-
of human beings. portunities to interact with other people and with
nature along the way. Spending time with his
CASE STUDY grandchildren could be enlivening through the joy
Mr. Jones is a 65-year-old man whose wife died young children can bring to an older person, as
6 months ago after a long illness. The couple was mar- could a sense of satisfaction derived from being
ried 45 years, and they were devoted to each other. helpful to his son and daughter-in-law.
They had three children who are now in their 30s.
Two of the children live several hundred miles away, Offering at a future time to use the skills he
but one son lives with his wife and two preschool learned while caring for his wife through volun-
children less than 1 mile from Mr. Jones’s home. teering with hospice would be an example of tran-
scending temporally. Integrating his memories of
Mr. Jones provided much of the care for his Mrs. Jones into his current life would be another
wife during her illness. Although her care was example of temporal self-transcendence.
time-consuming and fatiguing and kept him at
home much of the time, he was grateful that he Transpersonal self-transcendence is another
could care for her. He now is alone in their home, important experience for Mr. Jones. Although he
is very lonely, is uninterested in preparing meals was unable to attend church services for several
or eating, and lacks energy to return to his former years, he had in the past found worshiping with
community and social activities or even to interact others a source of comfort. His spiritual life might
with his son and family. even be expanded to consider new spiritual dimen-
sions such as that found in the possibility of “being
The hospice nurse contacted Mr. Jones for fol- with” his wife again someday or in some way expe-
low-up bereavement counseling. She told him that riencing her presence in the present. Returning to
although he had “passed” a routine physical exami- church or to addressing spiritual dimensions out-
nation the week before, she was concerned about side of organized worship that relates Mr. Jones’s
his continuing sadness and lack of energy. The understanding of death to some greater or divine
nurse reassured him that it was not uncommon to design is another example of transpersonal self-
grieve for many months after a major loss. She transcendence.

CHAPTER 29  Pamela G. Reed 585

CRITICAL THINKING ACTIVITIES how might you have facilitated self-transcendence
and a more positive outcome?
1 . Consider the pandimensional aspect of self- 3 . What nursing intervention could you do to facili-
transcendence, and list examples of when you tate self-transcendence in a woman with acquired
experienced expanded boundaries in your own immunodeficiency syndrome who is dying? Why
life. Identify how this expanded awareness influ- would you select this nursing action?
enced your health or sense of well-being in each 4. How might you apply the Self-Transcendence
example. Theory to help a frail 95-year-old person living in a
nursing home maintain or gain a sense of well-being?
2 . What are some factors in the life of patients you
cared for recently that negatively or positively in-
fluenced their self-transcendence? If negative,

POINTS FOR FURTHER STUDY n Reed, P. G. & Shearer, N. B. C. (2011). Nursing
knowledge and theory innovation: Advancing the
n Reed, P. G. (2008). Reed Self-Transcendence Theory. science of nursing practice. New York: Springer.
Nurse Theorists: Portraits of Excellence Vol. II.
Athens, (OH): Fitne Productions. n Reed, P. G. (2013). The theory of self-transcendence.
In M. J. Smith & P. R. Liehr (Eds.), Middle range
n Reed, P. G. (2010). Self-transcendence theory and theory for nursing (3rd ed.). New York: Springer.
nursing in illness and suffering. (DVD) For Escola
Superior da Saúde Instituto Politécnico de Leiria
Research Conference, Lisbon, Portugal.

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Reed, P. G. (2006). The practice turn in nursing epistemol- transcendence. Journal of Perinatal Education, 10(2).
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Science Quarterly, 19(2), 116. Research, 22, 29–53.
Chiu, L., Emblen, J., van Hofwegen, L., Sawatzky, R., &
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boundaries. Nursing Science Quarterly, 21(1), 37–39. concept of spirituality in the health sciences. Western
Journal of Nursing Research, 26(4), 405–428.
Reed, P. G. (2009). Demystifying self-transcendence for Magill, L. (2009). The spiritual meaning of pre-loss music
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Psychiatric Nursing, 23, 397–400. tients. Palliative and Supportive Care, 7, 97–108.
Phillips-Salimi, C. R., Haase, J. E., Kintner, E. K., Monahan,
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M. Tomey & M. Alligood. Nursing Science Quarterly, Reese, C. G., & Murray, R. B. (1996). Transcendence: The
12(3), 266–268. meaning of great-grandmothering. Archives of Psychiatric
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Leadership Forum, 4(2), 2–3.
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30C H A P T E R

Carolyn L. Wiener Marylin J. Dodd

1930 to present 1946 to present

Theory of Illness Trajectory

Janice Penrod, Lisa Kitko, and Gwen McGhan

“The uncertainty surrounding a chronic illness like cancer is the uncertainty
of life writ large. By listening to those who are tolerating this exaggerated
uncertainty, we can learn much about the trajectory of living”

(Wiener & Dodd, 1993, p. 29).

Credentials and Background Wiener is currently emeritus professor in the
of the Theorists Department of Social and Behavioral Sciences at
the School of Nursing at UCSF. Her research has
Carolyn L. Wiener focused on organization in health care institutions,
Carolyn L. Wiener was born in 1930 in San Francisco. chronic illness, and health policy. She has taught
She earned her bachelor’s degree in interdisciplinary qualitative research methods, mentored nursing
social science from San Francisco State University in and sociology students and visiting scholars at
1972. Wiener received her master’s degree in sociol- UCSF, and conducted numerous seminars and
ogy from the University of California, San Francisco workshops, nationally and internationally, on the
(UCSF) in 1975. She remained at UCSF to pursue her grounded theory method.
doctorate in sociology, and she completed her Ph.D.
in 1978. After receiving her Ph.D., Wiener accepted Throughout her career, Wiener’s excellence earned
the position of assistant research sociologist at UCSF, her several meritorious awards and honors. In 2001, she
where she remained for her entire professional career, gave the opening lecture in an international series enti-
attaining the rank of full professor in 1999. tled “Critiquing Health Improvement” at Nottingham
University School of Nursing in England. Also in 2001,

Photo credit: Robert Foothorap. From (2001). The UCSF School of Nursing Annual Publication, The Science of Caring, 13(1), 7.
Photo credit: Craig Carlson.

593

594 UNIT V  Middle Range Nursing Theories respectively. Dodd worked as an instructor in nursing
at the University of Washington following graduation
she was an honoree at the UCSF assemblage “Celebrat- with her master’s degree. By 1977, Dodd returned
ing Women Faculty,” an inaugural event honoring to academe and completed a Ph.D. in nursing from
women faculty for their accomplishments. Wiener’s col- Wayne State University. She then accepted the posi-
laborative relationship with the late Anselm Strauss tion of Assistant Professor at UCSF. During her
(co-originator with Barney Glaser of grounded theory) tenure there, Dodd advanced to the rank of full pro-
and her prolific experience in grounded theory meth- fessor, serving as Director for the Center for Symp-
ods are evidenced by her invited presentations at the tom Management at UCSF. In 2003, she was awarded
Celebration of the Life and Work of Anselm Strauss at the Sharon A. Lamb Endowed Chair in Symptom
UCSF in 1996, at a conference entitled Anselm Strauss, Management at the UCSF School of Nursing.
a Theoretician: The Impact of His Thinking on German
and European Social Sciences in Magdeburg, Germany Dodd’s exemplary program of research is focused
in 1999, and at the First Anselm Strauss Research in oncology nursing, specifically, self-care and symp-
Colloquium at UCSF in 2005. Wiener is highly sought tom management. Her outstanding record of funded
as a methodological consultant to researchers and stu- research provides evidence of the superiority and
dents from a variety of specialties. significance of her work. She has skillfully woven
modest internal and external funding with 23 years of
Dissemination of research findings and method- continuous National Institutes of Health funding
ological papers is a hallmark of Wiener’s work. She to advance her research. Her research trajectory has
produced a steady stream of research and theory ar- advanced impeccably as she progressively utilized
ticles from the mid-1970s. In addition, she authored both descriptive studies and intervention studies
or coauthored several books (Strauss, Fagerhaugh, employing randomized clinical trial methodologies to
Suczek, et al., 1997; Wiener, 1981, 2000; Wiener & extend an understanding of complex phenomena in
Strauss, 1997; Wiener & Wysmans, 1990). Her early cancer care.
works focused on illness trajectories, biographies, and
the evolving medical technology scene. From the late Dodd’s research was designed to test self-care in-
1980s to 1990s, Wiener focused on coping, uncer- terventions (PRO-SELF Program) to manage the side
tainty, and accountability in hospitals. Her study ex- effects of cancer treatment (mucositis) and symptoms
amining quality management and redesign efforts in of cancer (fatigue, pain). This research, entitled The
hospitals and the interplay of agencies and hospitals PRO-SELF: Pain Control Program—An Effective Ap-
around accountability led to a book, The Elusive Quest proach for Cancer Pain Management, was published
(Wiener, 2000). In this book, Wiener describes the in Oncology Nursing Forum (West, Dodd, Paul,
poor fit of quality improvement techniques borrowed et al., 2003). Dodd teaches in the Oncology Nursing
from corporate industry in a hospital setting where Specialty. In 2002, she instituted two new courses
professionals from diverse disciplines provide highly (“Biomarkers I and II”) that were developed by the
sophisticated care to patients whose individual biog- Center for Symptom Management Faculty Group.
raphies defy categorization and whose course of ill-
ness is idiosyncratic. Wiener challenged the concept Dodd’s illustrious career has merited several
that hospital performance can be, or should be, quan- prestigious awards. Among these honors, she was
titatively measured. All of Wiener’s work is grounded recognized as a fellow of the American Academy of
in her methodological expertise and sociological Nursing (1986). Her excellence and significant con-
perspective. tributions to oncology nursing are evidenced by her
Marylin J. Dodd having received the Oncology Nursing Society/
Marylin J. Dodd was born in 1946 in Vancouver, Schering Excellence in Research Award (1993,
Canada. She qualified as a registered nurse after 1996), the Best Original Research Paper in Cancer
studying at Vancouver General Hospital in British Nursing (1994, 1996), the Oncology Nursing Soci-
Columbia, Canada. She continued her education, ety Bristol-Myers Distinguished Researcher Career
earning a bachelor’s and a master’s degree in nursing Award (1997), and the Oncology Nursing Society/
from the University of Washington in 1971 and 1973, Chiron Excellence of Scholarship and Consistency
of Contribution to the Oncology Nursing Literature

CHAPTER 30  Carolyn L. Wiener; Marylin J. Dodd 595

Career Award (2000). In 2005, Dodd received the Such disruption affects all aspects of life, including
prestigious Episteme Laureate (the Nobel Prize in physiological functioning, social interactions, and
Nursing) Award from Sigma Theta Tau Interna- conceptions of self. Coping is the response to such
tional. This impressive partial listing of awards disruption. Because the processes surrounding the
demonstrates the magnitude of professional respect disruption of illness are played out in the context of
and admiration that Dodd has garnered throughout living, coping responses are inherently situated in
her career. sociological interactions with others and biographi-
cal processes of self. Coping is often described as a
Dodd’s record in research dissemination is equally compendium of strategies used to manage the dis-
illustrious. Her volume of original publications be- ruption, attempts to isolate specific responses to one
gan in 1975. By the early 1980s, she was publishing event that is lived within the complexity of life con-
multiple, focused articles each year, and this pace has text, or assigned value labels to the responsive behav-
only accelerated. She has authored or coauthored 130 iors (e.g., good or bad) that are described collectively
data-based peer-reviewed journal articles, seven as coping. Yet, the complex interplay of physiological
books and many book chapters, and numerous edito- disruption, interactions with others, and the con-
rials, conference proceedings, and review papers struction of biographical conceptions of the self war-
(1978, 1987, 1988, 1991, 1997, 2001, 2004). Her many rants a more sophisticated perspective of coping.
presentations at scientific gatherings around the
world accentuate this work. Dodd has been an in- The Theory of Illness Trajectory* addresses these
vited speaker throughout North America, Australia, theoretical pitfalls by framing this phenomenon
Asia, and Europe. within a sociological perspective that emphasizes the
experience of disruption related to illness within the
Dodd’s active service to the university, School of changing contexts of interactional and sociological
Nursing, Department of Physiological Nursing, and processes that ultimately influence the person’s re-
to numerous professional and public organizations sponse to such disruption. This theoretical approach
and journal review boards augments her outstand- defines this theory’s contribution to nursing: coping is
ing record of service to the profession of nursing. not a simple stimulus-response phenomenon that can
Despite the breadth and volume of these activities, be isolated from the complex context of life. Life is
she is an active teacher and mentor. Dodd is the centered in the living body, therefore physiological
faculty member of record for several graduate disruptions of illness permeate other life contexts to
courses and carries a significant advising load in the create a new way of being, a new sense of self. Re-
master’s, doctoral, and postdoctoral programs at sponses to the disruptions caused by illness are inter-
UCSF. From this brief overview of her amazing ca- woven into the various contexts encountered in one’s
reer, it is clear that Dodd is an exemplar of excel- life and the interactions with other players in those
lence in nursing scholarship. life situations.

Theoretical Sources Within this sociological framework, Wiener and
Dodd address serious concerns regarding concep-
Although coping with illness has been of interest to tual overattribution of the role of uncertainty for
social scientists and nursing scholars for decades, understanding responses to living with the disrup-
Wiener and Dodd clearly explicate that formerly tions of illness (Wiener & Dodd, 1993). An old ad-
implicit theoretical assumptions have limited the age tells us that nothing in life is certain, except
utility of this body of work (Wiener & Dodd, 1993, death and taxes. Living is fraught with uncertainty,
2000). Being ill creates a disruption in normal life. yet illness (especially chronic illness) compounds

*The Theory of Illness Trajectory refers to theoretical formulations regarding coping with uncertainty through the cancer illness
trajectory. From this perspective, coping is best viewed as change over time that is highly variable in relation to biographical and
sociological influences. The trajectory is this course of change, of variability, that cannot be confined to or modeled in linear phases
or stages. Rather, the illness trajectory organizes insights to better understand the dynamic interplay of the disruption of illness
within the changing contexts of life.

596 UNIT V  Middle Range Nursing Theories In other words, the illness trajectory is driven by
uncertainty in profound ways. Being chronically ill the illness experience lived within contexts that are
exaggerates the uncertainties of living for those who inherently uncertain and involve both the self and
are compromised (i.e., by illness) in their capability others. The dynamic flow of life contexts (both bio-
to respond to these uncertainties. Thus, although the graphical and sociological) creates a dynamic flow of
concept of uncertainty provides a useful theoretical uncertainties that take on different forms, meanings,
lens for understanding the illness trajectory, it can- and combinations when living with chronic illness.
not be theoretically positioned so as to overshadow Thus, tolerating uncertainty is a critical theoretical
conceptually the dynamic context of living with strand in the Theory of Illness Trajectory.
chronic illness.

MAJOR CONCEPTS & DEFINITIONS flow of the life. The domains of illness-related uncer-
tainty vary in dominance across the illness trajectory
Life is situated in a biographical context. Concep- (Table 30–1) through a dynamic flow of perceptions
tions of self are rooted in the physical body and are of self and interactions with others.
formulated based on the perceived capability to per-
form usual or expected activities to accomplish the The activities of life and of living with an illness
objectives of varied roles. Interactions with others are forms of work. The sphere of work includes the
are a major influence on the establishment of the person and all others with whom he or she interacts,
conception of self. As varied role behaviors are en- including family and health care providers. This
acted, the person monitors reactions of others and a network of players is called the total organization.
sense of self in an integrated process of establishing The ill person (or patient) is the central worker;
meaning. Identity, temporality, and body are key however, all work takes place within and is influ-
elements in the biographical context, as follows: enced by the total organization. Types of work are
n Identity: the conception of self at a given time that organized around the following four lines of trajec-
tory work performed by patients and families:
unifies multiple aspects of self and is situated in 1. Illness-related work: diagnostics, symptom man-
the body
n Temporality: biographical time reflected in the con- agement, care regimen, and crisis prevention
tinuous flow of the life course events; perceptions of 2. Everyday-life work: activities of daily living,
the past, present, and possible future interwoven
into the conception of self keeping a household, maintaining an occupa-
n Body: activities of life and derived perceptions tion, sustaining relationships, and recreation
based in the body 3. Biographical work: the exchange of information,
Illness, particularly cancer, disrupts the usual or ev- emotional expressions, and the division of tasks
eryday conception of self and is compounded by the through interactions within the total organization
perceived actions and reactions of others in the so- 4. Uncertainty abatement work: activities enacted
ciological context of life. This disruption permeates to lessen the impact of temporal, body, and
the interdependent elements of biography: identity, identity uncertainty
temporality, and body. This disruption or sense of The balance of these types of work is dynamically
disequilibrium is marked by a sense of a loss of con- responsive, fluctuating across time, situations, per-
trol, resulting in states of uncertainty. ceptions, and varied players in the total organization
As life contexts continually unfold, dimensions of in order to gain some sense of equilibrium (i.e., con-
uncertainty are manifest, not in a linear sequence of trol). This interplay among the types of work creates
stages or phases, but in an unsettling intermingling a tension that is marked by shifts in the dominance
of perceptions of the uncertain body, uncertain tem- of types of work across the trajectory. Recall, how-
porality, and uncertain identity. The experience of ever, that the biographical context is rooted in the
illness always is placed within the biographical con- body. As the body changes through the course of ill-
text, that is, illness is experienced in the continual ness and treatment, the capacity to perform certain

CHAPTER 30  Carolyn L. Wiener; Marylin J. Dodd 597

MAJOR CONCEPTS & DEFINITIONS—cont’d

types of work and, ultimately, one’s identity are were highly dynamic and responsive and occurred in
transformed. varied combinations and configurations across the
illness trajectory for different players in the organiza-
A major contribution of this work was the delin- tion. Those enacting these strategies affected the
eation of types of uncertainty abatement work (Table conception of self when they monitored others’ re-
30–2). These activities were enacted to lessen the sponses to the strategy as they attempted to manage
impact of the varied states of uncertainty induced by living with illness.
undergoing cancer chemotherapy. These strategies

TABLE 30-1  Illness Trajectory: States of Uncertainty

Domain Sources of Uncertainty Dimensions of Uncertainty
Loss of temporal predictability prompts
UNCERTAIN TEMPORALITY Life is perceived to be in a
constant state of flux related concerns surrounding:
Taken-for-granted expectations to illness and treatment.
regarding the flow of life events • Duration: how long
are disrupted. The self of the past is viewed • Pace: how fast
differently (e.g., the way it used • Frequency: how often the experience
A temporal disjunction in the to be).
biography of time is distorted (i.e., stretched out,
Expectations of the present constrained, or limitless)
UNCERTAIN BODY self are distorted by illness
and treatment. Ambiguity in reading body signs.
Changes related to illness and Concerns surrounding:
treatment are centered in Anticipation of the future self
one’s ability to perform usual is altered. • What is being done to the body
activities involving appearance, • Jeopardized body resistance
physiological functions, and Faith in the body is shaken • Efficacy and risks of treatment
response to treatment. (body failure). • Disease recurrence

UNCERTAIN IDENTITY The conception of the former Expected life course is shattered.
Interpretation of self is distorted body (the way it used to be) Evidence gleaned from reading the body
comingles with the altered state
as the body fails to perform in of the body at present and the is not interpretable within the usual
usual ways, and expectations changed expectations for how frame of understanding.
related to the flow of events the body may perform in the Hope is sustained despite changing
(temporality) are altered by future. circumstances.
disease and treatment.
Body failure and difficulty reading
the new body upset the former
conception of self.

Skewed temporality impairs the
expected life course.

Use of Empirical Evidence chemotherapy treatment. The sample for the larger
study included 100 patients and their families. Each
The Theory of Illness Trajectory was expanded through patient had been diagnosed with cancer (including
a secondary analysis of qualitative data collected dur- breast, lung, colorectal, gynecological, or lymphoma)
ing a prospective longitudinal study that examined and was in the process of receiving chemotherapy for
family coping and self-care during 6 months of

598 UNIT V  Middle Range Nursing Theories

TABLE 30-2  Uncertainty Abatement Work

Type of Activity Behavioral Manifestations

Pacing Resting or changing usual activities
Becoming “professional” patients
Using terminology related to illness and treatment
Seeking reinforcing comparisons
Engaging in reviews Directing care
Setting goals
Covering up Balancing expertise with super-medicalization

Finding a safe place to let down Comparing self with persons who are in worse condition to reassure self that it is
Choosing a supportive network not as bad as it could be
Taking charge
Looking back to reinterpret emergent symptoms and interactions with others in the
organization

Looking toward the future to achieve desired activities

Masking signs of illness or related emotions

Bucking up to avoid stigma or to protect others

Establishing a place where, or people with whom, true emotions and feelings could
be expressed in a supportive atmosphere

Selective sharing with individuals deemed to be positive supporters

Asserting the right to determine the course of treatment

initial disease treatment or for recurrence. Subjects in obtained at varied points in the course of chemo-
the study designated at least one family member who therapeutic treatment for cancer.
was willing to participate in the study.
As the data for the larger study were analyzed, it
Although both quantitative and qualitative mea- became apparent to Dodd (principal investigator)
sures were used in data collection for the larger study, that the qualitative interview data held significant
this theory was derived through analysis of the quali- insights that could further inform the study. Wiener,
tative data. Interviews were structured around family a grounded theorist who collaborated with Strauss,
coping and were conducted at three points during one of the method’s founders, was subsequently re-
chemotherapeutic treatment. The patients and the cruited to conduct secondary analysis of interview
family members were asked to recall the previous data. It should be noted that grounded theory meth-
month and then discuss the most important problem ods typically involve a concurrent, reiterative pro-
or challenge with which they had to deal, the degree cess of data collection and analysis (Glaser, 1978;
of distress created by that problem within the family, Glaser & Strauss, 1965). As theoretical insights are
and their satisfaction with the management of that identified, sampling and subsequent data collection
concern. are theoretically driven to flesh out emergent con-
cepts, dimensions, variations, and negative cases.
Meticulous attention was paid to consistency in However, in this project, the data had been col-
data collection: family members were consistent and lected previously using a structured interview guide;
present for each interview, the interview guide was thus, this was a secondary analysis of an established
structured, and the same nurse-interviewer con- data set.
ducted each data collection point for a given family.
Audiotaping the interview proceedings, verbatim Wiener’s expertise in grounded theory methods
transcription, and having a nurse-recorder present at permitted the adaptation of grounded theory methods
each interview to note key phrases as the interview for application to secondary data that proved success-
progressed further enhanced methodological rigor. ful. In essence, the principles undergirding analyses
The resultant data set consisted of 300 interviews (i.e., the coding paradigm) were applied to the preex-
(three interviews for each of 100 patient-family units) isting data set. The analytical inquiry proceeded

CHAPTER 30  Carolyn L. Wiener; Marylin J. Dodd 599

inductively to reveal the core social-psychological Major Assumptions
process around which the theory is explicated: tolerat-
ing the uncertainty of living with cancer. Dimensions Personis the focus of this middle-range theory. Middle
of the uncertainty, management processes, and conse- range theories address one or more of the paradigm
quences were further explicated revealing the internal concepts (nursing, person, health, and environment),
consistency of the theoretical perspective of illness therefore some are not explicitly addressed; however,
trajectory. the following discussion of theoretical assumptions
sheds some light on a theoretical interpretation of
When considering the use of adapted grounded these concepts. Wiener and Dodd’s Theory of Illness
theory methods to analyze preexisting empirical Trajectory explicates major assumptions that reflect its
evidence, several insights support the integrity of derivation within a sociological perspective (Wiener &
this work. First, Wiener was well prepared to ad- Dodd, 1993). Closer examination of each assumption
vance new applications of the method from training reveals several related basic premises undergirding the
and experience as a grounded theorist. The method- theory.
ological credibility of this researcher supports her
extension of a traditional research method into a The Theory of Illness Trajectory encompasses not
new application within her disciplinary perspective only the physical components of the disease, but the
(sociology). Further support is from the size of the “total organization of work done over the course of
data set: 100 patients and families were interviewed the disease” (Wiener & Dodd, 1993, p. 20). An illness
3 times each, for a total of 300 interviews, a very trajectory is theoretically distinct from the course of
large data set for a qualitative inquiry. Oberst pointed an illness. In this theory, the illness trajectory is not
out that given this volume of data, some semblance limited to the person who suffers the illness. Rather,
of theoretical sampling (within the full data set) the total organization involves the person with the
would likely be permitted by the researchers (Oberst, illness, the family, and health care professionals who
1993). But the sheer size of the data set does not tell render care.
the whole story.
Also, notice the use of the term work. “The varied
Sampling patients who had a relatively wide range players in the organization have different types of
of types of cancers (ranging from gynecological can- work; however, the patient is the ‘central worker’ in
cers to lung cancer) and both patients undergoing the illness trajectory” (Wiener & Dodd, 1993, p. 20).
initial chemotherapeutic treatment and those receiv- This statement reaffirms an earlier assertion in illness
ing treatment for recurrence contributed significantly trajectory literature (Fagerhaugh, Strauss, Suczek,
to variation in the data set. These sampling strategies et al., 1987; Strauss, Corbin, Fagerhaugh, Glaser, et al.,
ultimately contributed to establishing an appropriate 1984). The work of living with an illness produces
sample, especially for revealing a trajectory perspec- certain consequences that permeate the lives of the
tive of change over time. Finally, despite the struc- people involved. In turn, consequences and reciprocal
tured format of the interview, it is important to note consequences ripple throughout the organization,
that the patients and families dialogued about the enmeshing the total organization with the central
previous month’s events in a form of “brainstorming” worker (i.e., the patient) through the trajectory of
(Wiener & Dodd, 1993, p. 18). This technique allowed living with the illness. The relationship among the
the subjects to introduce almost any topic that was of workers in the trajectory is an attribute that “affects
concern to them (regardless of the subsequent struc- both the management of that course of illness, as well
ture of the interview). The audiotaping and verbatim as the fate of the person who is ill” (Wiener & Dodd,
transcription of these dialogues contributed to the 1993, p. 20).
variation and appropriateness of the resultant data
set. Therefore, it may be concluded that empirical Theoretical Assertions
evidence culled through the interviews conducted in
the larger study provide adequate and appropriate The context for the work and the social relationships
data for a secondary analysis using expertly adapted affecting the work of living with illness in the Theory
grounded theory methods. of Illness Trajectory is based in the seminal work of

600 UNIT V  Middle Range Nursing Theories theory was grounded in the reported experiences of
Corbin and Strauss (1988). As the central worker, the participants and integrated with illness knowledge
actions are undertaken by the person to manage the trajectories to advance the science.
impact of living with illness within a range of con-
texts, including the biographical (conception of self) Acceptance by the Nursing Community
and the sociological (interactions with others). From Practice
this perspective, managing disruptions (or coping
with uncertainty) involves patient interactions with The Theory of Illness Trajectory provides a framework
various players in the organization as well as external for nurses to understanding how cancer patients toler-
sociological conditions. Given the complexity of such ate uncertainty manifested as a loss of control. Identi-
interactions across multiple contexts and with the fication of the types of uncertainty is especially useful
numerous players throughout the illness trajectory, because it reveals strategies commonly employed by
coping is a highly variable and dynamic process. oncology patients in their attempt to manage their
lives as normally as possible in the wake of the uncer-
Originally, it was anticipated that the trajectory of tainty created by a cancer diagnosis. Awareness of the
living with cancer had discernible phases or stages that themes of uncertainty and related management strate-
could be identified by major shifts in reported prob- gies faced by patients undergoing chemotherapy and
lems, challenges, and activities. This was the rationale survivorship and their family members has a signifi-
for collecting qualitative data at three points during cant impact on how nurses subsequently intervene
the chemotherapy treatment. In fact, this notion did with these compromised patient systems who are
not hold true: the physical status of the patient with managing the work of their illness to “facilitate a less
cancer and the social-psychological consequences of troubled trajectory course for some patients and their
illness and treatment were the central themes at all families” (Wiener & Dodd, 1993, p. 29). An example is
points of measurement across the trajectory. Schlairet and colleagues (2010), who examined the
needs of cancer survivors receiving care in a cancer
The authors conceptually equate uncertainty with community center using the Theory of Illness Trajec-
loss of control, described as “the most problematic tory as a framework. They concluded that nurses need
facet of living with cancer” (Wiener & Dodd, 1993, to be aware of the specific needs of cancer survivors so
p. 18). This theoretical assertion is reflected further in that interventions can be developed to meet their
the identification of the core social-psychological needs (Schlairet, Heddon, & Griffis, 2010).
process of living with cancer, “tolerating the uncer-
tainty that permeates the disease” (p. 19). Factors that Education
influenced the degree of uncertainty expressed by the Wiener and Dodd are highly respected educators who
patient and family were based in the theoretical share their ongoing work through international confer-
framework of the total organization and external so- ences, seminars, consultations, graduate thesis advis-
ciological conditions, including the nature of family ing, and course offerings. Incorporation of this work
support, financial resources, and quality of assistance into these presentations not only advances knowledge
from health care providers. related to the utility of illness trajectory models but
also, perhaps more importantly, demonstrates how
Logical Form data-based theoretical advancement contributes to an
evolving program of research in cancer care (Dodd,
The primary logical form was grounded theory and 1997, 2001). Including the theory in nursing texts on
inductive reasoning. Analytical reading of the inter- research and theory exposes researchers to the work
views provided insights that led to the identification of and those in nursing practice (Wiener & Dodd, 2000).
the core process that unifies the theoretical assertions:
tolerating uncertainty. Systematic coding processes Research
were applied to define the dimensions of uncertainty The theory has been referenced in a limited number
and management processes used to deal with disease. of concept analyses or state-of-the-science papers
The findings were then examined for fit within extant
theoretical writings to extend understanding of the
illness trajectory. The resultant qualitatively derived

CHAPTER 30  Carolyn L. Wiener; Marylin J. Dodd 601

addressing uncertainty (McCormick, 2002; Mishel, advanced the concept of uncertainty and identified
1997; Parry, 2003). Mishel (1997) has praised the different types of uncertainty. The experience of living
broad theoretical focus maintained through the with uncertainty was dynamic in nature with changes
qualitative approach to theory derivation. Much of in the types and modes of uncertainty, and various
the work in coping with illness is constrained by the types of uncertainty were guided by the primary
application of Lazarus and Folkman’s framework of tenets of confidence and a sense of control.
problem-based or emotion-based coping; however,
in this study, inductive reasoning produced data- These insights demonstrate an evolving body of
based theory that identifies a broad range of strate- research related to uncertainty, control, and the ill-
gies related to tolerating and abating uncertainty ness trajectory. Rather than assume that uncertainty
(Lazarus & Folkman, 1984; Mishel, 1997). The varia- is a negative aspect of life, researchers must remain
tion and range of abatement strategies identified in open to positive transformational outcomes of living
this theory are a unique and significant contribution through uncertainty. Wiener and Dodd’s original rec-
to the body of research in coping with the uncer- ommendation remains salient, to expand the scope of
tainty of illness. the illness trajectory framework (Wiener & Dodd,
1993). The illness trajectory theoretical framework is
Further Development especially useful for understanding the variations in
uncertainty and control and for gaining a fuller per-
In an earlier response article to the original publica- spective of the human experience with cancer and
tion, Oberst (1993) took issue with the delimitation of other conditions where the significance of uncer-
the concept of uncertainty to loss of control. This criti- tainty and control may vary.
cism was echoed by McCormick (2002), who theoreti-
cally positioned loss of control in the uncertainty cycle Critique
rather than as a manifestation of a state of uncertainty. Clarity
In their work on end-of-life caregiving, Penrod and
colleagues (2012, 2011) posit that minimizing uncer- One concern in the clarity in Wiener and Dodd’s
tainty by increasing confidence and control is desirable Theory of Illness Trajectory is the delimitation of the
for patients and their family caregivers transitioning concept of uncertainty to a loss of control. This lim-
through the end-of-life trajectory. Further research ited conceptual perspective of uncertainty is clearly
into the concept of control is warranted to untangle the set forth in the work; therefore, this issue does not
conceptual boundaries and linkages between control create a significant or fatal flaw in the work. The the-
and uncertainty throughout the illness trajectory. ory is delineated clearly and well supported by previ-
ous work in illness trajectories. Propositional clarity is
Other researchers have criticized the implicit as- achieved in the logical presentation of relationships
sertion that uncertainty (or loss of control) is always a and linkages between concepts. The conceptual deri-
negative event that requires some form of abatement vation of managing illness as work is well developed
(Oberst, 1993; Parry, 2003). Oberst (1993) suggested and provides unique insight into the meaning of liv-
the need for further investigation to differentiate ing through chemotherapy during cancer treatment.
work related to tolerating uncertainty from abate- The application of the trajectory model is used consis-
ment work in order to reveal how effective strategies tently to demonstrate the dynamic fluctuations in
in each type of work affect the sense of uncertainty coping, not in clearly demarcated stages or phases,
throughout the trajectory. Parry (2003) studied survi- but in situation-specific contexts of the work of man-
vors of childhood cancer and revealed that although aging illness.
uncertain states may be a problematic stressor for
some, a more universal theme of embracing uncer- Simplicity
tainty toward transformational growth was evident in This complex theory is interpreted in a highly accessible
these survivors. manner. The Theory of Illness Trajectory adopts a so-
ciological framework that is applied to a phenomenon
Penrod (2007) helped to clarify the concept of un- of concern to nursing: chemotherapeutic treatment of
certainty with a phenomenological investigation that

602 UNIT V  Middle Range Nursing Theories remains problematic. Applicability of this theory to
phenomena of concern to nursing has been estab-
cancer patients and their families. The sense of under- lished by the focus on cancer chemotherapy. There-
standing imparted by the theory is highly relevant to fore, potential utility for guiding nursing practice
oncology nursing practice. The theory presents an elo- is demonstrated by the integration of the theory
quent and parsimonious interpretation of the complex- into Dodd’s exemplary program of research in cancer
ity of cancer work using key concepts with adequate care (Dodd & Miaskowski, 2000; Dodd, 2001; 2004;
definition; however, in order to comprehend the theo- Miaskowski, Dodd, & Lee, 2004; Jansen, Miaskowski,
retical assertions fully, review of previous published Dodd, et al., 2007).
studies would be very helpful.
Summary
Generality
The authors have limited the scope of this theory to Wiener and Dodd’s Theory of Illness Trajectory is at
patients and families progressing through chemo- once complex, yet eloquently simple. The sociological
therapy for initial treatment or recurrence of cancer. perspective of defining the work of managing illness
The Theory of Illness Trajectory is well defined within is especially relevant to the context of cancer care. The
this context. The integration of this middle-range theory provides a new understanding of how patients
theory with other work in illness trajectories and un- and families tolerate uncertainty and work strategi-
certainty theory indicates an emergent fit with other cally to abate uncertainty through a dynamic flow of
models of illness trajectories and uncertainty. Further illness events, treatment situations, and varied players
theory-building work may produce a broader scope involved in the organization of care. The theory is
that permits application of the theoretical proposi- pragmatic and relevant to nursing. The merits of this
tions in other contexts of illness trajectories. work warrant attention and use of the theory for prac-
tice applications that inform nurses as they interpret
Accessibility and facilitate the management of care during illness.
Grounded theory methods rely on the dominance of
inductive reasoning, that is, drawing abstractions or CASE STUDY
generalities from specific situations. Thus, the derived Mr. Miller is a 67-year-old man who has metastatic
theory is rooted in the experiences expressed in the cancer. His primary caregiver is his wife, Mrs. Miller.
hundreds of interviews with cancer patients and their Early in the course of treatment in your outpatient
families. The integration of data-based evidence (e.g., cancer care center, the couple focused their ques-
quotes) in the formal description of the theory sup- tions on the course of the disease, treatment options,
ports the linkages between the theoretical abstrac- and potential side effects of varied treatment op-
tions and empirical observations. Empirical evidence tions. They were proud of their ability to maintain
is presented in a logical, consistent manner that rings “normal life” as Mr. Miller continued to work
true to clinical experiences. Thus, the theory is useful throughout aggressive treatment, taking time off
to clinicians and holds promise for further research only when the discomforts of treatment were so de-
application. bilitating that he was physically unable to get to his
office. Mr. and Mrs. Miller expressed little emotion
Importance throughout the course of treatment; they frequently
The importance of the theoretical contributions made praised each other’s strength and fortitude. During
by this work, especially types of work and uncertainty recent visits, Mrs. Miller has become extremely fo-
abatement strategies during chemotherapy, has been cused on laboratory values and test results, using
established. The utility of the theory is apparent in highly technical language. She has also become ada-
cancer treatment, and further theoretical develop- mant that certain staff members must perform cer-
ment holds promise of being generalizable to other tain tasks because “she does it better than anyone.”
contexts within cancer care and other illness trajecto-
ries. Yet, the limited evidence of directly derived
consequences related to application of the Theory of
Illness Trajectory in practice-based studies in nursing

CHAPTER 30  Carolyn L. Wiener; Marylin J. Dodd 603

The Theory of Illness Trajectory helps the clini- families are to manage care effectively, they must
cian to interpret these behaviors and to intervene be educated proactively to do so (Dodd, 1997,
to help ease transitions across this trajectory. For 2001).
example, clinicians can identify easily with pa-
tients and families who have become “professional In proactively educating the patient-family sys-
patients” as they learn to use complex technical tem, consider the varied domains of uncertainty
jargon about their treatment, laboratory values, or and the varied forms of uncertainty abatement
illness (Wiener & Dodd, 1993). These “junior doc- work. To understand the patient-family trajectory,
tors” attempt to earn a modicum of control as they assessment data are critical. For example, although
manage treatment by requesting particular staff well-developed protocols for symptom manage-
members to perform specific tasks (Dodd, 1997, ment or palliation are available, such protocols are
p. 988). Care providers have a tendency to view this useless if patients or caregivers fail to describe the
behavior as a positive hallmark of assuming self- extent of symptoms because they perceive these
care and, therefore, often reinforce such behaviors. “hassles” or “bothers” as trivial in the face of life-
threatening disease. Compounding this issue,
Deeper consideration of the theoretical asser- nurses may fall into a pattern of focusing on illness-
tions of the Theory of Illness Trajectory reveals related work, thereby diverting important attention
that these behavioral strategies are efforts to toler- from the other forms of work faced by these pa-
ate the uncertainty of the illness experience. The tients and their families. Understanding of the var-
confidence built through these socially reinforced ied domains of uncertainty and forms of uncer-
behaviors can be converted to guilt very quickly tainty abatement work facilitates a more open
when situations beyond the expertise of the pa- dialogue regarding these key areas of concern, al-
tient or family go awry. Given this perspective, the lowing the nurse to encourage the patient and care-
limitation of this management strategy becomes giver to share more about their experiences in an
clear, and intervention is indicated: if patients and effort to help them through this difficult time.

CRITICAL THINKING ACTIVITIES 3 . As an advanced clinician, you are intimately in-
volved in the work of managing an illness. Based
1 . How does an illness trajectory differ from a on your understanding of the work of illness
course of illness? Consider how the application of management espoused in the Theory of Illness
each perspective yields different foci for interven- Trajectory, what nursing behaviors have you
tion in a health condition. Which perspective is observed that exacerbate feelings of loss of
most congruent with your views of nursing? control or uncertainty in patients?

2. Considering your clinical experiences, identify 4 . What factors (personal, environmental, or organi-
examples of how patients and their families have zational) contributed to the nursing behaviors
experienced health-related uncertainty. Was un- observed in question 3? What nursing interven-
certainty related to a loss of control? What are the tions would create a less troubling trajectory for
conditions under which health-related uncertainty patients and families in the situations observed?
is perceived as a negative life event versus those
when it is perceived as a growth-enhancing event?

POINTS FOR FURTHER STUDY n Dodd, M. J., Miaskowski, C. (2000). The PRO-
SELF program: A self-care intervention program
n Dodd, M. J. (2001). Managing the side effects of for patients receiving cancer treatment. Seminars
chemotherapy and radiation therapy: A guide for in Oncology, 16(4), 300–308.
patients and their families (4th ed.). San Francisco:
UCSF School of Nursing.

604 UNIT V  Middle Range Nursing Theories n West, C. M., Dodd, M. J., Paul, S. M., Schumacher,
n Jansen, C. E., Miaskowski, C. A., Dodd, M. J., & K., Tripathy, D., Koo, P., et al. (2003). The PRO-
SELF: Pain control program—An effective approach
Dowling, G. A. (2007). A meta-analysis of the for cancer pain management. Oncology Nursing
sensitivity of various neuropsychological tests Forum, 30, 65–73.
used to detect chemotherapy-induced cognitive
impairment in patients with breast cancer. Oncol-
ogy Nursing Forum, 34(5), 997–1005.
n Penrod, J. (2007). Living with uncertainty: Con-
cept advancement. Journal of Advanced Nursing,
57(6), 658–667.

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tegration of nursing research into a pediatric oncology

CHAPTER 30  Carolyn L. Wiener; Marylin J. Dodd 607

Mandrell, B. N., Ruccione, K., Dodd, M. J., Moore, J., Nelson, management regimens into practice at home. Journal of
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and their application to biomarkers for ovarian cancer. phies and reluctance to use opioids for cancer pain man-
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Shih, A., Miaskowski, C., Dodd, M. J., Stotts, N. A., &
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1304–1313.

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31C H A P T E R

Georgene Gaskill Eakes Mary Lermann Burke Margaret A. Hainsworth

1945 to present 1941 to present 1931 to present

Theory of Chronic Sorrow

Ann M. Schreier and Nellie S. Droes

“Chronic sorrow is the presence of pervasive grief-related feelings that have
been found to occur periodically throughout the lives of individuals with
chronic health conditions, their family caregivers and the bereaved”

(Burke, Eakes, & Hainsworth, 1999, p. 374).

Credentials and Background master’s level and a graduate fellowship from the North
of the Theorists Carolina League for Nursing for her doctoral studies.
She was inducted into Sigma Theta Tau International
Georgene Gaskill Eakes in 1979 and Phi Kappa Phi in 1988.
Georgene Gaskill Eakes was born in New Bern, North
Carolina. She received a Diploma in Nursing from Early in her professional career Eakes worked in
Watts Hospital School of Nursing in Durham, North acute and community-based psychiatric and mental
Carolina, in 1966, and she graduated Summa Cum health settings. In 1980, she joined the faculty at
Laude from North Carolina Agricultural and Technical the East Carolina University School of Nursing in
State University with a baccalaureate in nursing Greenville, North Carolina.
in 1977. Eakes completed her M.S.N. in 1980 at the
University of North Carolina at Greensboro and her Eakes’s interest in issues related to death, dying,
Ed.D. in 1988 at North Carolina State University. Eakes grief, and loss relates to the 1970s, when she sustained
received a federal traineeship for graduate study at the life-threatening injuries in an automobile crash. This
near-death experience heightened her awareness of
how ill-prepared health care professionals and lay

Photo credit: Center for Health Sciences Communication, Brody School of Medicine, East Carolina University, Greenville, NC.
Photo credit: Olan Mills Portrait Studio, Centerdale, RI.
Photo credit: Shawn Hainsworth, New York, NY.

609

610 UNIT V  Middle Range Nursing Theories counselors for North Carolina and local and regional
people are to deal with individuals facing their hospice volunteers. Eakes is active in efforts to
mortality and the general lack of understanding improve the quality of care at the end of life and is a
of grief reactions experienced in response to loss member of the Board of Directors of the End of
situations. Motivated by this insight, her research Life Care Coalition of Eastern North Carolina.
investigated death anxiety among nursing personnel
in long-term care settings and the exploration of grief In 2002, Eakes received the East Carolina University
resolution among hospice nurses. Scholar Teacher Award, which recognizes excellence in
integration of research into teaching practices. In 1999,
In 1983, Eakes established a community-service Eakes received the Best of Image award for theory
support group for individuals diagnosed with cancer publication presented by the Sigma Theta Tau
and their significant others that she continues to International Honor Society of Nursing for her article,
co-facilitate. Leadership of this group alerted her to “Middle-Range Theory of Chronic Sorrow.” She was
the ongoing nature of grief reactions associated a finalist in the Oncology Nursing Forum Excellence
with potentially life-threatening and chronic illness. in Writing Award in 1994. Other honors and awards
While presenting her research at a Sigma Theta Tau include the North Carolina Nurse Educator of the Year
International conference in Taipei, Taiwan, in 1989, by North Carolina Nurses Association in 1991 and
she attended a presentation on chronic sorrow by Outstanding Researcher by the Beta Nu Chapter
Mary Lermann Burke. She immediately made the of Sigma Theta Tau International Honor Society for
connection between Burke’s description of chronic Nurses in 1994 and 1998. Eakes has served as a re-
sorrow in mothers of children with a myelomeningo- viewer for Qualitative Health Research, an international
cele disability and her observations of grief reactions interdisciplinary journal.
among the cancer support group members.
Eakes is Professor Emeritus at East Carolina
After the conference, Eakes contacted Burke to University College of Nursing. Prior to her retirement,
explore the possibility of collaborative research she taught undergraduate courses in psychiatric
endeavors. They scheduled a meeting that included and mental health nursing and nursing research, a
Burke and her colleague, Margaret A. Hainsworth, master’s-level course in nursing education, and an
and Carolyn Lindgren, a colleague of Hainsworth. interdisciplinary graduate course titled “Perspectives
The Nursing Consortium for Research on Chronic on Death/Dying.” Currently, she is Director of Clinical
Sorrow (NCRCS) was an outcome of the first meeting Education at Vidant Medical Center in Greenville, NC
in the summer of 1989. (G. Eakes, personal communication, 2012).

Subsequent to the NCRCS’s establishment, mem- Mary Lermann Burke
bers conducted numerous collaborative qualitative Mary Lermann Burke was born in Sandusky, Ohio.
research studies on populations of individuals She was awarded her initial nursing diploma from the
affected with chronic or life-threatening conditions, Good Samaritan Hospital School of Nursing in
on family caregivers, and on bereaved individuals. Cincinnati in 1962, and a postgraduate certification
Eakes focused her studies on those diagnosed with from Children’s Medical Center in the District of
cancer, family caregivers of adult mentally ill children, Columbia. After several years of experience in pedi-
and individuals who have experienced the death of atric nursing, Burke graduated Summa Cum Laude
a significant other. From 1992 to 1997, Eakes received with a bachelor’s degree in nursing from Rhode Island
three research grant awards from the East Carolina College in Providence. In 1982, she received her
University School of Nursing and two research master’s degree in parent-child nursing from Boston
grants from the Beta Nu Chapter of Sigma Theta Tau University, where she was also awarded a Certificate
International to support her research projects. in Parent-Child Nursing and Interdisciplinary Train-
ing in Developmental Disabilities from the Child
In addition to her professional publications, Development Center of Rhode Island Hospital and
Eakes has conducted numerous presentations on the Section on Reproductive and Developmental
issues related to grief-loss and death and dying to pro- Medicine at Brown University in Providence. In 1989,
fessionals and lay groups at the local, state, national,
and international levels. She was heavily involved
with the training of sudden infant death syndrome

CHAPTER 31  Georgene Gaskill Eakes; Mary Lermann Burke; Margaret A. Hainsworth 611

she received her nursing science doctorate in Family dissertation research, Chronic Sorrow in Mothers of
Studies from Boston University. School-Age Children with Myelomeningocele.

Burke was inducted into Theta Chapter, Sigma In June 1989, Burke presented her dissertation re-
Theta Tau, during her master’s program at Boston search at the Sigma Theta Tau International Research
University in 1981 and became a charter member of Congress in Taipei, Taiwan, where she interacted
Delta Upsilon Chapter-at-Large of Sigma Theta Tau at with Dr. Eakes of East Carolina University and
Rhode Island College in 1988. She received a Doctoral Dr. Hainsworth of Rhode Island College. Subsequently,
Student Scholarship Award from Theta Chapter in this group became the NCRCS, joined briefly by
1988 and the Delta Upsilon Chapter-at-Large Louisa Dr. Carolyn Lindgren of Wayne State University. To-
A. White Award for Research Excellence in 1996. gether they developed a modified Burke/NCRCS
Chronic Sorrow Questionnaire and conducted a series
During the period from 1991 to 1996, Burke re- of individual studies that were then analyzed collabora-
ceived four Rhode Island College Faculty Research tively. Burke’s studies in this series focused on chronic
Grants for studies of chronic sorrow. In 1998, she was sorrow in infertile couples, adult children of parents
awarded a grant from the Delta Upsilon Chapter-at- with chronic conditions, and bereaved parents. The
Large for initial quantitative instrument development collaboratively analyzed studies led to the development
for the study of chronic sorrow. From 1992 to 1995, of a middle-range Theory of Chronic Sorrow, which
Burke was principal investigator on the Transition to was published in 1998. Members of the Consortium,
Adult Living Project, funded by the Department of both individually and collaboratively, presented
Health and Human Services, Maternal and Child numerous papers on chronic sorrow at local, state,
Health Bureau, Genetics Services Branch. In 1995, national, and international conferences and published
she was co-principal investigator on a New England 10 articles in refereed journals. Their article, “Middle-
Regional Genetics Group Special Projects Grant, The Range Theory of Chronic Sorrow” received the Best of
Transition to Adult Living Project—System Dissemi- Image Award in 1999 in the Theory Category from
nation of Information. Sigma Theta Tau International. Burke has collaborated
with Dr. Eakes in the development of the Burke/Eakes
Burke’s early practice was in pediatric nursing Chronic Sorrow Assessment Tool.
specialty in both acute and primary settings. She
joined the faculty of the Rhode Island College Burke is active in numerous professional and com-
Department of Nursing as clinical instructor in 1980, munity organizations. She serves on the St. Joseph’s
and she became full-time in 1982, assistant professor Health Services of Rhode Island Board of Trustees.
in 1987, associate professor in 1991, and professor She received the Outstanding Alumna Award for
in 1996. During this period, she taught pediatric Contributions in Nursing Education from the Rhode
nursing in didactic and clinical courses. She also Island College Department of Nursing and the
developed and taught a nursing course encompass- Alumni Honor Roll Award from Rhode Island Col-
ing nutrition, pharmacology, and pathophysiology. lege (L. Burke, personal communication, 2005).
Burke retired from Rhode Island College faculty in
December 2002. Margaret A. Hainsworth
Margaret A. Hainsworth was born in Brockville,
Burke had become interested in the concept of Ontario, Canada. She received her diploma in nursing
chronic sorrow during her master’s program while in in 1953 at Brockville General Hospital in Brockville,
a clinical practicum at the Child Development Center Ontario. In 1959, she immigrated to the United States
of Rhode Island Hospital. While working there with to attend the George Peabody College for Teachers
children with spina bifida and their parents, she de- in Nashville, Tennessee, where she received a diploma
veloped a clinical notion that the emotions she ob- in public health nursing. Hainsworth continued her
served in the parents were consistent with chronic education at Salve Regina College in Newport, Rhode
sorrow as first described by Olshansky (1962). Her Island, and received a baccalaureate degree in nursing
master’s thesis, The Concerns of Mothers of Preschool in 1973. She then received a master’s degree in psychi-
Children with Myelomeningocele, identified emotions atric and mental health nursing from Boston College
similar to chronic sorrow. She then developed the
Burke Chronic Sorrow Questionnaire for her doctoral

612 UNIT V  Middle Range Nursing Theories at international, state, and regional conferences
and published 13 manuscripts. In 1999, they were
in 1974 and a doctoral degree in education adminis- awarded the Best of Image Award in Theory from
tration from the University of Connecticut in 1986. Sigma Theta Tau International (M. Hainsworth,
In 1988, she became board certified as a clinical personal communication, 2005).
specialist in psychiatric and mental health nursing.
Theoretical Sources
Hainsworth was inducted into Sigma Theta Tau,
Alpha Chi Chapter in 1978 and Delta Upsilon Chapter- The concept of chronic sorrow originated with
at-Large in 1989. In 1976, she received the outstanding the work of Olshansky in 1962 (Lindgren, Burke,
faculty award at Rhode Island College. In 1992, she was Hainsworth, et al., 1992). The NCRCS (Eakes, Burke,
selected and attended the Technical Assistance Work- & Hainsworth,1998) based their middle-range Theory
shop and Mentorship for Nurses in Implementation of the of Chronic Sorrow on the work of Olshansky (1962).
National Plan for Research in Child and Adolescent Lazarus and Folkman’s (1984) model of stress and
Mental Disorders,sponsored by the National Institutes adaptation formed the foundation for their conceptu-
of Health. Hainsworth reviewed manuscripts for alization of how persons cope with chronic sorrow.
Qualitative Health Research, an Inter-disciplinary Journal,
a Sage publication. In 1999, she was a visiting fellow on The NCRCS theorists cite Olshansky’s observations
a faculty exchange program at the Royal Melbourne of parents with mentally retarded children that indi-
Institute of Technology in Melbourne, Australia. cated these parents experienced recurrent sadness and
his coining the term chronic sorrow. This original
Hainsworth’s nursing practice was in public health concept was described as “a broad, simple description
and psychiatric and mental health nursing. She became of psychological reaction to a tragic situation”
a lecturer in the Department of Nursing at Rhode (Lindgren, Burke, Hainsworth, et al., 1992, p. 30)
Island College in 1974 and full professor in 1992.
Her major area of teaching was psychiatric care in the During the 1980s, other researchers began to
classroom and clinical. A course entitled “Death and examine the experience of parents of children
Dying” that she taught became an elective in the who were either physically or mentally disabled.
college’s general studies program. Hainsworth always This work validated a recurrent sadness and never-
maintained her practice and was employed for 13 years ending grief the parents experienced. Grief was
as a consultant at the Visiting Nurse Association. She previously conceptualized as a process that resolved
entered private practice at Bay Counseling Association over time, and if unresolved, was abnormal accord-
in 1993 and maintained that practice for 5 years. ing to Bowlby and Lindemann’s work (Lindgren,
Burke, Hainsworth, et al., 1992). In contrast to
Her interest in chronic illness and its relationship this time-bound conceptualization, chronic sorrow
to sorrow began in her practice as a facilitator for a researchers later described recurrent sadness as a
support group for women with multiple sclerosis. This normal experience (Lindgren, Burke, Hainsworth,
interest led to her dissertation work, An Ethnographic et al., 1992). Burke, in her study of children with
Study of Women with Multiple Sclerosis Using a Symbolic spina bifida, had defined chronic sorrow as “perva-
Interaction Approach. This research was accepted for a sive sadness that is permanent, periodic and progres-
presentation at the Sigma Theta Tau Research Congress sive in nature” (as cited in Hainsworth, Eakes, &
in Taipei, Taiwan, in 1989, where she learned about Burke, 1994, p. 60).
Burke’s research on chronic sorrow after attending her
presentation. The NCRCS group focused on the response to
grief and incorporated Lazarus and Folkman’s 1984
Building on Burke’s work, the NCRCS was estab- work on stress and adaptation as a basis for manage-
lished in 1989 to expand the understanding of ment methods described in their work (Eakes, Burke,
chronic sorrow. Hainsworth was one of the four & Hainsworth, 1998). Internal coping strategies
cofounders and remained an active member until include action-oriented, cognitive reappraisal and
1996. The NCRCS research began with four studies interpersonal behaviors (Eakes, Burke, & Hainsworth,
focused on chronic sorrow in individuals in chronic 1998). Thus, the middle-range Theory of Chronic
life situations, and members of the consortium ana-
lyzed data collaboratively. During the 7 years she was
a member, the consortium presented their findings

CHAPTER 31  Georgene Gaskill Eakes; Mary Lermann Burke; Margaret A. Hainsworth 613

MAJOR CONCEPTS & DEFINITIONS with spina bifida, which were conducted in Burke’s
Chronic Sorrow (1989) dissertation work. Through this research,
Chronic sorrow is the ongoing disparity resulting Burke defined chronic sorrow as a pervasive sadness
from a loss characterized by pervasiveness and and found that the experience was permanent,
permanence. Symptoms of grief recur periodically, periodic, and potentially progressive (Eakes, Burke,
and these symptoms are potentially progressive. Hainsworth, et al., 1993). This was the foundation
Loss for the subsequent series of studies, including the
Loss occurs as a result of disparity between the interview guides used in these studies.
“ideal” and real situations or experiences. For
example, there is a “perfect child” and a child with The NCRCS studies addressed the following:
a chronic condition who differs from that ideal. • Individuals with the following:
Trigger Events
Trigger events are situations, circumstances, and • Cancer (Eakes, 1993)
conditions that highlight the disparity or the recur- • Infertility (Hainsworth, Eakes, & Burke, 1994)
rent loss and initiate or exacerbate feelings of grief. • Multiple sclerosis (Hainsworth, Burke, Lindgren,
Management Methods
Management methods are means by which et al., 1993; Hainsworth, 1994)
individuals deal with chronic sorrow. These may • Parkinson’s disease (Lindgren, 1996)
be internal (personal coping strategies) or external • Spousal caregivers of persons with the following:
(health care practitioner or other persons’ inter- • Chronic mental illness (Hainsworth, Busch,
ventions).
Ineffective Management Eakes, et al., 1995)
Ineffective management results from strategies • Multiple sclerosis (Hainsworth, 1995)
that increase the individual’s discomfort or • Parkinson’s disease (Lindgren, 1996)
heighten the feelings of chronic sorrow. • Parental caregivers of the following:
Effective Management • Adult children with chronic mental illness
Effective management results from strategies
that lead to increased comfort of the affected (Eakes, 1995)
individual. Based on these studies, the theorists postulated that
chronic sorrow occurs in any situation in which the
Sorrow extended the theoretical base of chronic loss is unresolved. These studies did not demonstrate
sorrow to not only the experience of chronic sorrow consistently that the associated emotions worsened
in certain situations but also the coping responses to over time. However, the theorists concluded that
the phenomenon. the studies did support the “potential for progressivity
and intensification of chronic sorrow over time”
Use of Empirical Evidence (Eakes, Burke, & Hainsworth, 1998, p. 180).
Chronic Sorrow The NCRCS theorists extended their studies to
individuals experiencing a single loss (bereaved).
The empirical evidence supporting the NCRCS’s They found that this population experienced these
initial conceptual definition of chronic sorrow was same feelings of chronic sorrow (Eakes, Burke, &
derived from interviews with mothers of children Hainsworth, 1999).
Based on this extensive empirical evidence, the
NCRCS theorists refined the definition of chronic
sorrow as the “periodic recurrence of permanent,
pervasive sadness or other grief-related feelings
associated with ongoing disparity resulting from
a loss experience” (Eakes, Burke, & Hainsworth,
1998, p. 180)

Triggers
Using the empirical data from the series of studies,
the NCRCS theorists identified primary events or
situations that precipitated the re-experience of initial

614 UNIT V  Middle Range Nursing Theories External management was described initially by
Burke as interventions provided by health professionals
grief feelings. These events were labeled chronic (Eakes, Burke, & Hainsworth, 1998). Health care
sorrow triggers (Eakes, Burke, Hainsworth, et al., professionals assist affected populations to increase
1993). The NCRCS compared and contrasted the their comfort through roles of empathetic presence,
triggers of chronic sorrow in individuals with chronic teacher-expert, and caring and competent professional
conditions, family caregivers, and bereaved persons (Eakes, 1993; Eakes, 1995; Eakes, Burke, Hainsworth,
(Burke, Eakes, & Hainsworth, 1999). For all popula- et al., 1993; Eakes, Burke, & Hainsworth, 1999;
tions, comparisons with norms and anniversaries Hainsworth, 1994; Hainsworth, 1995; Hainsworth,
were found to trigger chronic sorrow. Both family Busch, Eakes, et al., 1995; Lindgren, 1996).
caregivers and persons with chronic conditions
experienced triggering with management crises. In summary, an impressive total of 196 interviews
One trigger unique for family caregivers was the resulted in the middle-range Theory of Chronic
requirement of unending caregiving. The bereaved Sorrow. The theorists summarized a decade of
population reported that memories and role change research with individuals with chronic sorrow and
were unique triggers. found that this phenomenon frequently occurs in
Management Strategies persons with chronic conditions, in family caregivers,
The NCRCS posited that chronic sorrow is not and in the bereaved (Burke, Eakes, & Hainsworth,
debilitating when individuals effectively manage 1999; Eakes, Burke, & Hainsworth, 1998).
feelings. The management strategies were catego-
rized as internal or external. Self-care management Major Assumptions
strategies were designated as internal coping strate- Nursing
gies. The NCRCS designated internal coping strate-
gies as action, cognitive, interpersonal,and emotional. Diagnosing chronic sorrow and providing interven-
tions are within the scope of nursing practice. Nurses
Action coping mechanisms were used across all can provide anticipatory guidance to individuals at
subjects—individuals with chronic conditions and risk. The primary roles of nurses include empathetic
their caregivers (Eakes, 1993; Eakes, 1995; Eakes, presence, teacher-expert, and caring and competent
Burke, & Hainsworth, 1999; Eakes Burke, Hainsworth, caregiver (Eakes, Burke, & Hainsworth, 1998).
et al., 1993; Hainsworth, 1994; Hainsworth, 1995;
Hainsworth, Busch, Eakes, et al., 1995; Lindgren, Person
1996). The examples provided are similar to distrac- Humans have an idealized perception of life processes
tion methods commonly used to cope with pain. For and health. People compare their experiences both
instance, “keeping busy” and “doing something fun” with the ideal and with others around them. Although
are examples of action-oriented coping (Eakes, 1995; each person’s experience with loss is unique, there are
Lindgren, Burke, Hainsworth, et al., 1992). The common and predictable features of the human loss
NCRCS theorists found that cognitive coping was experience (Eakes, Burke, & Hainsworth, 1998).
used frequently, and examples included “thinking
positively,” “making the most of it,” and “not trying to Health
fight it” (Eakes, 1995; Hainsworth, 1994; Lindgren, There is a normality of functioning. A person’s health
1996). Interpersonal coping examples included “going depends upon adaptation to disparities associated
to a psychiatrist,” “joined a support group,” and “talk- with loss. Effective coping results in a normal response
ing to others” (Eakes et al., 1993; Hainsworth, 1994; to life losses (Eakes, Burke, & Hainsworth, 1998).
1995). Emotional strategy examples included “having
a good cry” and expressing emotions (Eakes, Burke, & Environment
Hainsworth, 1998; Hainsworth, Busch, Eakes, et al., Interactions occur within a social context, which
1995). A management strategy was labeled effective includes family, social, work, and health care environ-
when a subject described it as helpful in decreasing ments. Individuals respond to their assessment of
feelings of re-grief.

CHAPTER 31  Georgene Gaskill Eakes; Mary Lermann Burke; Margaret A. Hainsworth 615

themselves in relation to social norms (Eakes, Burke, Hainsworth, Burke, Lindgren, et al., 1993; Hainsworth,
& Hainsworth, 1998). Busch, Eakes, et al., 1995; Hainsworth, Eakes, Burke,
1994; Lindgren, 1996; Lindgren, Burke, Hainsworth,
Theoretical Assertions et al., 1992). Suggestions are provided on how nurses
may assist individuals and family caregivers to effec-
1 . Chronic sorrow is a normal human response tively manage the milestones or triggering events.
related to ongoing disparity created by a loss More specifically, the work identifies nursing roles as
situation. empathetic presence, teacher-expert, and caring and
competent professional (Eakes, Burke, Hainsworth,
2 . Chronic sorrow is cyclical in nature. et al., 1993).
3. Predictable internal and external triggers of height-
NCRCS-Derived Literature
ened grief can be categorized and anticipated. The original NCRCS work is referenced in publica-
4. Humans have inherent and learned coping strate- tions in practice-focused journals. Several non-
NCRCS nurse authors published articles that cite
gies that may or may not be effective in regaining NCRCS studies directed to practicing clinicians
normal equilibrium when experiencing chronic (Gedaly-Duff, Stoger, & Shelton, 2000; Gordon, 2009;
sorrow. Kerr, 2010; Krafft & Krafft, 1998; Scornaienchi, 2003).
5. Health care professionals’ interventions may or Interdisciplinary practice-focused literature provided
may not be effective in assisting the individual to guidance useful to nurses (Doka, 2004; Harris &
regain normal equilibrium. Gorman, 2011; Miller, 1996).
6 . A human who experiences a single or an ongoing
loss will perceive a disparity between the ideal and The work listed above in the practice section is
reality. also educationally related. The next section presents
7. The disparity between the real and the ideal leads evidence of undergraduate, graduate, and continuing
to feelings of pervasive sadness and grief (Eakes, education support of the NCRCS’s work on chronic
Burke, & Hainsworth, 1998). sorrow’s relevance in the educational community.

Logical Form Education
Undergraduate Education
This theory is based on a series of qualitative studies. Standardized Nursing Languages. Literature on stan-
Through the analysis of 196 interviews, the middle- dardized nursing languages reveals that chronic
range Theory of Chronic Sorrow evolved. With the sorrow is a diagnostic category (NANDA, 2011) with
empirical evidence, the NCRCS theorists described related expected outcomes and suggested interven-
the phenomenon of chronic sorrow, identified com- tions (Johnson, Moorhead, Bulechek, et al., 2012).
mon triggers of re-grief, and described internal coping Comparison of the definitions of chronic sorrow used
mechanisms and the role of nurses in the external by the North American Nursing Diagnosis Associa-
management of chronic sorrow. Evidence of the tion International (NANDA-I) and the NCRCS (Eakes,
theoretical assumptions is clear in empirical data. Burke, & Hainsworth, 1998) reveal essentially similar
dimensions. Several widely used nursing diagnosis
Acceptance By the Nursing Community textbooks (Ackley & Ladwig, 2011; Carpenito-Moyet,
Practice 2010; Doenges, Moorhouse, & Murr, 2010) cite the
work of the NCRCS and/or authors who used the
NCRCS-Original Work NCRCS’s work to explicate linkages among chronic
The series of NCRCS studies, which form the founda- sorrow as a diagnostic category, intervention, and
tion of the middle-range Theory of Chronic Sorrow outcome. Linkages among diagnostic categories in the
(Eakes, Burke, & Hainsworth, 1998), are replete with North American Diagnostic Association International
practice applications. Each article relates the findings to (NANDA-I), the Nursing Outcomes Classification
clinical nursing practice (Burke, Eakes, & Hainsworth,
1999; Eakes, 1993; Eakes, 1995; Hainsworth, 1994;

616 UNIT V  Middle Range Nursing Theories Adult children with the following:
• Cerebral palsy (Masterson, 2010; Wee, 2010)
(NOC), and the Nursing Interventions Classification Continuing Education
(NIC) (Johnson, Moorhead, Bulechek, et al., 2012) Several authors used the consortium’s work on
provide educational applications for undergraduate chronic sorrow in articles, offered for continuing
nursing students and educators—for nursing students education credit at the time of publishing for clini-
learning clinical decision processes and for nurse cians who work with families with chronically ill
educators designing curricula and teaching clinical members (Doornbos, 1997; Hobdell, Grant, Valencia,
decision processes. Moreover, the linkages focus care et al., 2007; Mallow & Bechtel, 1999; Meleski, 2002;
planning on outcomes, an essential step in teaching Melnyk, Feinstein, Moldenhouer, et al., 2001).
evidence-based practice (Pesut & Herman, 1998). Drench’s (2003) course for physical therapists and
physical therapy assistants presented content on loss
Graduate Research Education: Nursing and grief that included the NCRCS’s work.
The use of the NCRCS’s theoretical work in unpub-
lished master’s theses and doctoral dissertations and in Research
dissertation-related articles is evidence of graduate
nursing education use. Studies are listed as follows and A review of published research that used the
are categorized according to graduate level and topic. NCRCS’s work reveals that researchers have
• Master’s theses extended the work through studies conducted with
representative populations studied previously and
• Chronic sorrow in mothers of chronically ill with new populations.
children (Golden, 1994; Shumaker, 1995) Extensions of NCRCS populations are listed as follows:
• Multiple sclerosis—individuals and caregivers
• Doctoral dissertations
• Parental caregivers of children with special (Isaksson, Gunnarsson, & Ahlstrom, 2007; Isaks-
health care needs (Kelly, 2010) son & Ahlström, 2008; Liedstrom, Isaksson, &
• Women who are treated for cancer and experi- Ahlstrom, 2008)
enced fertility problems and/or premature • Neural tube defects—parental caregivers (Hobdell,
menopause (Hunter, 2010) 2004)
• Development of the Kendall Chronic Sorrow • Bereavement—parents following stillbirth (Erland-
Instrument to screen for and measure the expe- sson, Saflund, Wredling, et al., 2011)
rience of chronic sorrow (Kendall, 2005) Extensions of NCRCS work to new populations are
listed as follows:
Graduate Research Education: Other Individuals:
Disciplines • Who have human immunodeficiency virus (HIV)
Graduate students in other professional disciplines, (Lichtenstein, Laska, & Clair, 2002; Ingram &
including education, social work, psychology, educa- Hutchinson, 1999)
tion, and family life have conducted dissertational • Who are female victims of child abuse (Smith,
studies using the NCRCS’s work. These unpublished 2007; 2009)
studies, listed as follows according to topic, hold Family caregivers of children with the following:
interdisciplinary relevance for nursing practice. • Asthma (Maltby, Kristjanson, & Coleman, 2003)
• Individuals with the following: • Diabetes (Bowes, Lowes, Warner, et al., 2009;
Lowes & Lyne, 2000)
• Chronic back pain (Blair, 2010) • Disabilities (Mallow & Bechtel, 1999; Patrick-Ott
• Infertility (Casale, 2009) & Ladd, 2010)
• Bipolar disorder (Freedberg, 2011) • Epilepsy (Hobdell, Grant, Valencia, et al., 2007)
• Family caregivers of the following: • HIV (Mawn, 2012)
Young and adolescent children with: • Sickle cell disease (Northington, 2000)
• Multiple disabilities (Parrish, 2010); a signifi-

cant disability (Patrick-Ott & Ladd, 2010);
special health care needs (Kelly, 2010)
• Chronic mental illness (Davis, 2006)
• Autism (Collins, 2008; Monsson, 2010)

CHAPTER 31  Georgene Gaskill Eakes; Mary Lermann Burke; Margaret A. Hainsworth 617

Although most of the authors were from the are defined, and the middle-range theory describes
United States, the literature reflects an international the proposed relationship among the concepts that
interest with publications by nurses from Australia make intuitive sense. For example, it is clear that
(Maltby, Kristjanson, & Coleman, 2003), Sweden effective management, whether internal or external,
(Ahlstrom, 2007; Isaksson & Ahlström, 2008; Pejlert, will lead to increased comfort, and, conversely, inef-
2001), and the United Kingdom (Bowes, Lowes, fective management will lead to increased discomfort
Warner, et al., 2009; Lowes & Lyne, 2000). Several and intensity of chronic sorrow. As a middle-range
studies were written by occupational therapists, and theory, the scope is limited to explanation of a single
one was written by sociologists, supporting the asser- phenomenon, that of response to loss, and is congru-
tion that NCRCS work is the basis for international ent with clinical practice experience. As Eakes has
and interdisciplinary research. Application of this stated, “the beauty of this middle range theory is that
middle-range theory to research is seen in current it rings true with practitioners, students, and educa-
nursing literature (Eakes, 2013). tors, as is evident from the continued communication
nationally and internationally” (G. Eakes, personal
Further Development communication, May 2012).

To date, most of the research efforts related to Some, albeit few, of the NCRCS’s interviewees
the middle-range Theory of Chronic Sorrow used did not experience the symptoms labeled as Chronic
qualitative methods and focused on identifying the Sorrow. This one unclear aspect of the theory
concept’s occurrence in new populations. Instrument remains—that is, why not all individuals with unre-
development studies designed to measure the intensity solved losses experience chronic sorrow. No further
of chronic sorrow at the interval or ratio level will data have been reported about these individuals.
enhance further development of the theory. Current Although chronic sorrow is unique to each person
instruments—the Burke/Eakes Chronic Sorrow and their situation, do individuals who do not experi-
Assessment (Eakes, 2013) and the Kendall Chronic ence chronic sorrow have different personality
Sorrow Instrument (Kendall, 2005)—yield data at characteristics? Are they more resilient, or did they
the nominal or ordinal levels. Ratio or interval chronic receive effective health care interventions at the time
sorrow–intensity understanding would enhance of their loss? What would these individuals suggest
studies designed to measure evidence of the effective- about ongoing coping with loss?
ness of nursing roles and interventions to achieve
outcomes identified in the NOC system, for example, This and a clarification of the categories of internal
“Acceptance: Health Status . . . Depression Level . . .  management strategies point to future work on this
Hope . . . Mood Equilibrium” (Johnson, Moorhead, theory. How problem-oriented and cognitive strate-
Bulechek, et al., 2012, p. 220–221). This type of gies differ and the emotive-cognitive, emotional, and
research would contribute empirical support for interpersonal strategies are not clearly described. The
evidence-based or theory-based nursing practice. overlap between external versus internal management
raises a question when the word interpersonal is used
Critique to describe seeking professional help.
Clarity
Finally a concept that needs clarification is pro-
This theory clearly describes a phenomenon observed gression of chronic sorrow. Although chronic sorrow
in the clinical area when loss occurs, and it is evident is described as potentially progressive, the nature of
that it is highly accepted in nursing practice. The the progression and the pathology associated with it
nursing diagnosis of Chronic Sorrow is included in is not clear.
the standardized languages of NANDA-I. It is defined
as cyclical, recurrent, and potentially progressive, and Simplicity
it is consistent with the NCRSC definition. In each of The Theoretical Model of Chronic Sorrow (Figure 31–1)
the published works of these theorists, key concepts enhances the understanding of the relationship among
the variables. With this model, it is clear that chronic
sorrow is cyclical in nature, pervasive, and potentially
progressive. Further, with the subconcepts of internal

618 UNIT V  Middle Range Nursing Theories

Loss experience LIFE-SPAN Chronic sorrow
Ongoing Disparity Pervasive
Single event Permanent
Trigger Periodic
events Potentially progressive

Management
methods

Internal External
Ineffective Effective
Discomfort Increased
comfort

FIGURE 31-1  ​Theoretical Model of Chronic Sorrow. (From Eakes, G. G., Burke, M. L., & Hainsworth, M. A.
[1998]. Middle-range theory of chronic sorrow. Image: The Journal of Nursing Scholarship, 30[2], 180.)

versus external management and ineffective versus Accessibility
effective management, it is clear what type of assess- As is characteristic of middle-range theory, the limited
ment and at what point appropriate intervention scope readily allows researchers to study clinical phe-
by nurses and other health care providers would be best nomenon. With a limited number of variables and
to prevent chronic sorrow from becoming progressive. defined relationships among the variables, researchers
With a limited number of defined variables, the theory are able to generate hypotheses to study nursing inter-
is succinct and readily understood. As a middle-range ventions that promote effective management strategies
theory, it is useful for research design and practice for chronic sorrow. These outcome studies provide
guidance. and add to the foundation of evidence-based practice.

Generality Because the theory was derived from empirical
The concept of chronic sorrow began with the study evidence, it has clear utility for further research. The
of parents of children with a physical or cognitive clear definition of chronic sorrow allows the study of
defect. The NCRCS theorists, through empirical individuals with a variety of losses and loss situations
evidence, expanded the theory to include a variety of that commonly result in chronic sorrow. In their
loss experiences. The theory clearly applies to a study of bereaved individuals, Eakes and colleagues
wide range of losses and is applicable to the affected (1999) identified symptoms of chronic sorrow in
individual as well as to the caregivers and the be- most subjects.
reaved. In addition, the theory is useful to a variety of
health care practitioners. With these concepts, the Importance
unique nature of the experience is captured with As a consequence of the rich body of research
the broadness of the concepts such as triggers. The surrounding this theory, chronic sorrow is a widely
triggers and the management strategies are unique accepted phenomenon. This is evident by its inclusion
to the individual situation and thus allow application in NANDA-I diagnoses. Nurses and other health care
to a wide variety of situations. professionals found validity for their experiences with
loss in the clinical arena. Subsequently, health care

CHAPTER 31  Georgene Gaskill Eakes; Mary Lermann Burke; Margaret A. Hainsworth 619

practitioners are able to normalize the experience. As her primary caregiver. Mrs. Jones complains of
Eakes stated, “chronic sorrow is like the pregnancy difficulty sleeping and has frequent headaches.
experience, it is a normal process in which clients can As the nurse, you suspect that Mrs. Jones may be
benefit from guidance and support of health care profes- experiencing chronic sorrow.
sionals” (G. Eakes, personal communication, May 2012).
Using the Burke/NCRCS Chronic Sorrow
Summary Questionnaire (caregiver version) as an interview
guide, you find evidence of chronic sorrow (Eakes,
Loss is an experience common to all individuals. This 1995). Mrs. Jones describes frequent feelings of
middle-range theory describes the phenomenon of being overwhelmed. She expresses that she feels
chronic sorrow as a normal response to the ongoing both angry at times and heartbroken that her
disparity created by the loss. The major concepts are daughter will never have a normal life. She indi-
described and include disparity, triggers, and manage- cates that she has had these feelings off and on
ment strategies (internal and external). The theoretical since her daughter’s accident. Further, she tells you
sources and empirical evidence are described. There is that she sees no end to her caregiving responsi-
abundant evidence that the theory is accepted and used bilities. These feelings are strongest when her
in practice, education, and research. It is referenced friend’s children get married and get jobs away
internationally by nurses and those in other disciplines. from home. She copes with these feelings by trying
Suggestions for further development and research are to focus on the positive (her daughter is alive and
presented. A thorough critique describes the clarity of her sons are doing well) and talking with a few
the concepts and the simplicity and the usefulness of close friends.
the theory for evidence-based research.
You reassure Mrs. Jones that she is not alone in
CASE STUDY her situation, and that it is normal to have these
Susan Jones is a 21-year-old woman who sustained feelings. In the course of the interview, you find
a spinal cord injury at 14 years of age as a result that Mrs. Jones has not sought professional coun-
of a diving accident. She is quadriplegic and seling. Mrs. Jones tells you that she feels better
attends a local college. Her mother, Mary Jones, is because this is the first time a health professional
has asked her about her feelings. With Mrs. Jones,
you begin to strategize on finding respite care and
a regular mental health counselor to assist her in
coping with chronic sorrow.

CRITICAL THINKING ACTIVITIES 3 . Compare and contrast the middle-range Theory
of Chronic Sorrow with Kubler-Ross’s stages of
1. Using the middle-range Theory of Chronic Sorrow grief and Bowlby’s theory of loss. What is alike
as a framework, devise one or more hypotheses and different among them?
about parents of children with diabetes who do
or do not attend a support group. 4. Based on the theoretical assertions of the middle-
range theory, consider a clinical situation in which
2 . What outcome measures or objective evalua- the Theory of Chronic Sorrow was or could be
tion could be used to validate the effectiveness applied in your practice. State your rationale.
of interventions in a chronic sorrow support
group?

620 UNIT V  Middle Range Nursing Theories sorrow assessment tool. Unpublished raw data
([email protected]).
POINTS FOR FURTHER STUDY n Kendall, L. C. (2005). The experience of living with
ongoing loss: Testing the Kendall Chronic Sorrow
n Eakes, G. G. (2013). Chronic sorrow. In S. J. Instrument. (Doctoral Dissertation).
Peterson & T. S. Bredow (Eds.), Middle range
theories: Application to nursing research (3rd ed.,
pp. 96–107). Philadelphia: Lippincott.

n Eakes, G. G., & Burke, M. L. (2002). Development
and validation of the Burke/Eakes chronic

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Carpenito-Moyet, L. J. (2010). Nursing diagnosis: Application
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Meridean, M., & Swanson, E. (2012). NOC and NIC

624 UNIT V  Middle Range Nursing Theories Melnyk , B. M., Feinstein, N. F., Moldenhouer, Z., & Small, L.
Palliative Care, 7(2), 139–152. doi:10.1080/15524256.20 (2001). Coping in parents of children who are chronically
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32C H A P T E R

Phil Barker

The Tidal Model of Mental Health Recovery

Nancy Brookes

“Mental illnesses or psychiatric disorders are ‘problems of human living’: people find
it difficult to live with themselves or to live with others in the social world. A simple

idea that becomes complicated when we try to engage with it. Nurses try to help
people address these problems of living, in an effort to live through them. Another

simple idea, that becomes complicated at the level of practice. All is paradox”
(Personal communication, February 23, 2008).

Background and Credentials for Young Painters in 1974. By this time, he had
of the Theorist already become a psychiatric nurse. He continues
to paint word pictures in metaphor. Barker credits
Phil Barker was born in Scotland by the sea, and art school with introducing him to “learning from
thus began the influence of and interest in water, the Reality,” the reality of experience, which became the
ultimate metaphor of life (Barker, 1996a). He credits focus of his philosophical inquiries. His fascination
his father and grandfather with “the warmth of nur- with Eastern philosophies, which began at art school,
ture and the discipline of boundaries,” who helped flows through the Tidal Model with echoes of chaos,
him appreciate that “life was an answer waiting for uncertainty, change, and the Chinese idea of crisis
the right question,” and he, like them, became a phi- as opportunity. This early involvement in the arts
losopher (Barker, 1999b, p. xii). Life in this context also helps to explain Barker’s view of nursing as “the
contributed to his enduring curiosity and interest in craft of caring” (Barker, 2000c, 2000e; Barker &
the philosophy of the everyday, which resonate Whitehill, 1997).
throughout the Tidal Model.
Following art school, Barker worked as a commer-
Barker trained as a painter and sculptor in the cial artist and mural painter, supplementing his income
mid-1960s, and he won the prestigious Pernod Award with laboring work on the railroads and in factories.

626

After a gap of more than 30 years, Barker returned to CHAPTER 32  Phil Barker 627
painting in 2006 and has become a successful, award- (Barker dislikes the use of the term narrative, which
wining artist (see: www.mcloughlinart.com). he prefers to call story). Barker has published in the
area of psychiatric and mental health nursing since
Barker’s “ocean of experience” surged in a new 1978. A prolific writer, he has published 19 books,
direction in 1970, when he took a position as an over 50 book chapters, and more than 150 academic
“attendant at the local asylum.” His fascination with papers. He was Assistant Editor for the Journal of
the human dimension, the lived experience, and the Psychiatric and Mental Health Nursing for a decade.
stories of people challenged by mental distress Barker became a Fellow of the Royal College of Nurs-
prompted him to relocate his interest in the arts and ing (UK) in 1995, only the fourth psychiatric nurse to
humanities to nursing. be so honored. He received the Red Gate Award for
Distinguished Professors at the University of Tokyo in
Barker’s early progress through nursing, although 2000. In 2001, he received an Honorary Doctorate
unusual, was typical of the times and the context. from Oxford Brookes University in England, and a
Soon after qualifying in 1974, Barker began to study room was named in his honor at the Health Care
and practice various psychotherapies such as cogni- Studies Faculty at Homerton College in Cambridge.
tive behavioral therapy, and family and group ther- Barker has held visiting professorships at interna-
apy. His doctoral research, begun in 1980, featured tional universities in Australia (Sydney), Europe
cognitive behavioral work with a group of women (Barcelona), and Japan (Tokyo). From 2002 to 2007,
living with depression (Barker, 1987). However, he was Visiting Professor at Trinity College in Dublin.
around this time, Barker became uncomfortable with In 2006, he received the inaugural “Lifetime Achieve-
the application of therapies to people experiencing ment Award” from Blackwell journals, publishers of
problems in living, and the “uncertainty principle” the Journal of Psychiatric and Mental Health Nursing.
resurfaced for him. His curiosity about life and per- In 2008, he shared with his wife Poppy Buchanan-
sons provoked questions about the resilience and Barker the Thomas Szasz Award for Contributions to
integrity of the people with whom he was working. Civil Liberties at New York University.
Instead of “caring for” or “treating,” them, he was
learning what it meant to experience distress from With his wife and professional partner, Poppy
the people themselves. He wondered what recovery Buchanan-Barker, Barker has conducted recovery-
meant to people. Questions re-emerged around the focused workshops and seminars in Australia, Canada,
following: New Zealand, Japan, Finland, Denmark, Turkey,
• What it is to be a person Germany, Ireland, and the United Kingdom. A popu-
• What is the proper focus of nursing, and lar commentator on the human condition, Barker
• What are nurses needed for? brings to radio, television, and the popular press his
passion for and curiosity about the recovery process
During his tenure as Professor of Psychiatric Nurs- and personhood.
ing Practice at the University of Newcastle begun in
1993, these questions framed his research agenda and Barker is currently an Honorary Professor at the
culminated in the development of the Tidal Model. University of Dundee in Scotland and a psychotherapist
in private practice. He and Poppy Buchanan-Barker
As the UK’s first Professor of Psychiatric Nursing have further developed the recovery paradigm at Clan
Practice, Barker broke the conventional “academic” Unity, their international mental health recovery and
mold by maintaining his involvement in practice. reclamation consultancy in Scotland.
This involvement led directly to the development of
the Tidal Model. Throughout his nursing career, Theoretical Sources
Barker has wondered about the proper focus of psy-
chiatric nursing and the role of care, compassion, The Tidal Model is focused on the fundamental care
understanding, and courage in helping people who processes of nursing, is universally applicable, and is
are experiencing extreme distress, loss of self, or a practical guide for psychiatric and mental health
spiritual crisis (Barker, 1999b). The Tidal Model was nursing (Barker, 2001b). The theory is radical in its
developed within this context and history. The “story reconceptualization of mental health problems as
knowledge” base lies at the heart of the Tidal Model.

628 UNIT V  Middle Range Nursing Theories A feature of Barker’s nursing practice has been his
unequivocally human, rather than psychological, so- exploration of the possibilities of genuine collabora-
cial, or physical (Barker, 2002b). The Tidal Model tive relationships with users of mental health services.
“emphasizes the central importance of developing In the 1980s, he developed the concept of “caring
understanding of the person’s needs through collab- with” people, learning that the professional-person
orative working, developing a therapeutic relationship relationship could be more “mutual” than the original
through discrete methods of active empowerment, nurse-patient relationship defined by Peplau (1969).
establishing nursing as an educative element at the Barker further developed this concept during the
heart of interdisciplinary intervention” (Barker, 2000e, 1990s in a working relationship with Dr. Irene White-
p. 4) and seeks to resolve problems and promote men- hill and others who used mental health services
tal health through narrative approaches (Stevenson, (Barker & Whitehill, 1997). This led to the “need
Barker, & Fletcher, 2002). for nursing” and “empowerment” studies as well as a
commitment to publish the stories of people’s experi-
The Tidal Model is a philosophical approach to ence of madness, and their voyage of recovery, com-
recovery of mental health. It is not a model of care plete with personal and spiritual meanings (Barker,
or treatment of mental illness, although people Campbell and Davidson, 1999; Barker, Jackson, &
described as mentally ill do need and receive care. Stevenson, 1999a; Barker & Buchanan-Barker, 2004b).
The Tidal Model represents a worldview, helping the Barker enlisted the support of Dr. Whitehill and
nurse begin to understand what mental health might other “user/consumer consultants,” to evaluate “user
mean for the person in care, and how that person friendly” qualities of the original processes of the
might be helped to begin the complex voyage of Tidal Model. This involvement of “user/consumer
recovery. Therefore, the Tidal Model is not prescrip- consultants” is seen in several ongoing projects and
tive. Rather, a set of principles, the Ten Tidal Com- represents a distinctive feature of continued develop-
mitments, serve as a metaphorical compass for ment of the Tidal Model.
the practitioner (Buchanan-Barker & Barker, 2005,
2008). They guide the nurse in developing responses Barker’s long-standing appreciation of Eastern phi-
to meet the individual and contextual needs of losophies pervades his work. The work of Shoma
the person who has become the patient. The experi- Morita is a specific example of how the philosophical
ence of mental distress is invariably described in assumptions of Zen Buddhism were integrated with
metaphorical terms. The Tidal Model employs the psychotherapy (Morita, Kondo, Levine, & Morita,
universal and culturally significant metaphors asso- 1998). Morita’s dictum—”Do what needs to be done”—
ciated with the power of water and the sea, to repre- resonates in many of the practical activities of the
sent the known aspects of human distress. Water is Tidal Model. In contrast to the zealous “problem-
“the core metaphor for both the lived experience of solving” attitude embraced by much of Western psy-
the person . . . and the care system that attempts to chiatry and psychology, Morita believed that it was
mold itself around a person’s need for nursing” futile to try to “change” oneself or one’s “problems,”
(Barker, 2000e, p. 10). which come and go like the weather. Instead, the focus
should be on answering the questions:
Barker describes an “early interest in the human • What is my purpose in living?
content of mental distress . . . and an interest in the • What needs to be done now?
human (phenomenological) experience of distress,”
which is viewed in contexts and wholes rather than People have the capacity to live and grow through
isolated parts (Barker, 1999b, p. 13). The “whole” nature distress, by doing what needs to be done. For people
of being human is “re-presented on physical, emotional, who are in acute distress, especially when they are at
intellectual, social and spiritual planes” (Barker, 2002b, risk to self or others, it is vital that nurses relate
p. 233). This phenomenological interest pervades the directly to the person’s ongoing experience. Origi-
Tidal Model with an emphasis on the lived experience nally Barker called this process engagement, but he
of persons, their stories (replete with metaphors), and has since redefined the specific interpersonal process
narrative interventions. Nurses carefully and sensitively as bridging, a supportive human process necessary to
meet and interact with people in a “sacred space” reach out to people in distress. This emphasizes the
(Barker, 2003a, p. 613).

need to build, creatively, a means of reaching the per- CHAPTER 32  Phil Barker 629
son; crossing in the process, the murky waters of living, merely pragmatic strategies for living with
mental distress (Barker & Buchanan-Barker, 2004b). such problems. The influence of Denny Webster and
her colleagues in Denver in the early 1990s, introduc-
The Tidal Model may be viewed through the lens of ing de Shazer’s ideas into nursing practice, signifi-
social constructivism, recognizing that there are mul- cantly shaped the development of the Tidal Model
tiple ways of understanding the world. Meaning (Webster, Vaughn, & Martinez, 1994).The Tidal
emerges through the complex webs of interaction, Model draws its core philosophical metaphor from
relationships, and social processes. Knowledge does chaos theory, where the unpredictable yet bounded
not exist independently of the knower, and all knowl- nature of human behavior and experience can be
edge is situated (Stevenson, 1996). Change is the only compared to the flow and power of water (Barker,
constant, as meaning and social realities are constantly 2000b, p. 54). In constant flux, the tides ebb and flow;
renegotiated or constructed through language and they exhibit nonrepeating patterns yet stay within
interaction. Barker believes “all I am is story; all I bounded parameters (Vicenzi, 1994). Barker (2000b)
can ever be is story.” As people try to explain to others acknowledges the “complexity [of] both the internal
“who” they are, they tell stories about themselves universe of human experience and the external uni-
and their world of experience, revising, editing, and verse, which is, paradoxically, within and beyond the
rewriting these stories through dialogue. Barker first individual, at one and the same time” (p. 52). Within
discussed this idea with his mentor, Hilda (Hildegard) this complex, nonlinear perspective, small changes
Peplau in 1994, who agreed that “people make them- create later unpredictable changes; a hopeful message
selves up as they talk” (Barker, 2003a; Barker & that directs nurses and persons to identify small
Buchanan-Barker, 2007b). changes and variations. Chaos theory suggests that
there are limits to what we can know, and Barker
Barker credits many thinkers with influencing his invites nurses to cease the search for certainty, em-
work, beginning with Annie Altschul and Thomas bracing instead the reality of uncertainty. Know that
Szasz. His view of mental health problems as problems “change is constant,” one of the Ten Tidal Commit-
of living popularized by Szasz (1961, 2000) and later ments, identifies and celebrates change in people,
Podvoll (1990) is a perspective he prefers to diagnos- circumstances, relationships, and organizations
tic labeling and the biomedical construction of people (Barker, 2003b; Buchanan-Barker & Barker, 2008).
and illness (Barker, 2001c, p. 215). He agrees with This perspective also presents challenges in trying to
Szasz that it is futile to try to “solve problems in understand people, relationships, and situations. It
living.” Life is not a problem to be solved. Life is directs inquiry in qualitative, nonlinear ways, such as
something to be lived, as intelligently, as competently, action research, grounded theory, phenomenology,
as well as we can, day in and day out (Miller, 1983, and critical theory (Barker, 1999a).
p. 290). The challenge for nursing is to help persons
live “intelligently” and “competently.” Annie Altschul, the Grande Dame of British psychi-
atric nursing (Barker, 2003a, p. 12), along with Hilda
Travelbee’s (1969) concept of the Therapeutic Use (Hildegard) Peplau, was one of Barker’s mentors.
of Self flows through the Tidal Model and provides an Altschul’s influence, especially her early appreciation of
anchor for the “proper focus of nursing.” The follow- system theory, is evident in the Tidal Model, as is her
ing three main theoretical frameworks underpin the interest in understanding rather than explaining mental
Tidal Model: distress and her belief that people need more straight-
1. Peplau’s (1952; 1969) Interpersonal Relations Theory forward help than many psychiatric theories suggest.
2. Theory of Psychiatric and Mental Health Nursing
Barker credits Peplau, the mother of psychiatric
derived from the Need for Nursing studies nursing, with his becoming “an advocate for nursing
3 . Empowerment within interpersonal relationships as a therapeutic activity in its own right” (Barker,
2000a, p. 617). Peplau introduced her interpersonal
The pragmatic emphasis on strength-based, solu- paradigm for the study and practice of nursing in the
tion-focused approaches acknowledges the important early 1950s and defined nursing as “a significant,
influence of Steve de Shazer’s solution-focused ther- therapeutic, interpersonal process” (Peplau, 1952,
apy, although, as noted above, Barker does not believe
that there can be any “solutions” for problems in

630 UNIT V  Middle Range Nursing Theories resources. The theory integrates the need for nursing
p. 16). A defining characteristic of the Tidal Model studies, collaboration, empowerment, interpersonal re-
is emphasis on story in the person’s own voice. lationships, story, strengths-base, and solution-seeking
approaches, and is systemic. In the holistic assessment,
The empirically derived empowering interactions nurses explore the person’s present ‘problems’ or ‘needs’,
framework suggests that improvement in the person’s the scale of these problems/needs, what is currently
situation and lifestyle is possible, building on strengths in a person’s life that might help to resolve problems
is better than focusing on problems, collaboration is or meet needs, and what needs to happen to bring
key, participation is the way, and self-determination is about change (Barker, 2000e; Barker & Buchanan-
the ultimate goal (Barker & Buchanan-Barker, 2004a; Barker, 2007a). Nurses help identify and mobilize per-
Barker, Stevenson & Leamy, 2000). Eight respectful, sons’ strengths and resources, and the person’s goals
empowering interactions bring generally invisible nurs- direct the work of the health care team (Barker, 2000e;
ing interactions into the practice arena (Michael, 1994). Stevenson, Jackson, & Barker, 2003). The Ten Tidal
De Shazer’s (1994) influence is evident as he asserts that Commitments support this perspective and direction
change and intervention “boils down to stories about (Box 32–1).
the telling of stories, the shaping and reshaping of sto-
ries so that troubled people change their story” (p. xvii). This is a significant reframing of the view of the
person-in-care and the proper focus of nursing.
The strength base of the Tidal Model emphasizes
searching for and revealing solutions, and identifying

BOX 32-1  The Ten Tidal Commitments: Essential Values of the Tidal Model

The Tidal Model draws on our values about relating voice of the person—rather than reinforce the
to people. These frame our efforts to help others in voice of authority.
their moment of distress. Traditionally, the person’s story is “translated”
into a third-person professional account by differ-
The values of the Tidal Model reflect a philoso- ent health care or social care practitioners. This
phy of how we would hope to be treated should we becomes not so much the person’s story (my
experience distress or difficulty in our lives. story) but the professional team’s view of the story
(history).The Tidal Model seeks to help people
As more people around the world have become develop their own unique narrative accounts into
involved in exploring the Tidal Model for their a formalized version of “my story” by ensuring
work in different settings, the need to reaffirm that all assessments and records of care are writ-
the core values of the Tidal Model has become ten in the person’s own “voice.” If the person is
more apparent. We have come to appreciate how unable or unwilling to write in his or her own
both the “helper” (whether professional, friend, or hand, then the nurse acts as secretary, recording
fellow traveler) and the person need to make a what has been agreed conjointly is important—
commitment to change. This commitment binds writing this in the “voice” of the person.
them together. 2. Respect the language: People develop unique
ways of expressing their life stories, representing
The Ten Tidal Commitments distil the essence of to others that which the person alone can know.
the value base of the Tidal Model. These commit- The language of the story—complete with its
ments need to be firmly in place for any team or unusual grammar and personal metaphors—is
individual practitioner who wishes to develop the the ideal medium for illuminating the way to
practice of the Tidal Model. recovery. We encourage people to speak their
1. Value the voice: The person’s story is the be- own words in their distinctive voice.
Stories written about patients by professionals
ginning and end point of the whole helping are traditionally framed by arcane technical
encounter, embracing not only the account of
the person’s distress, but also the hope for its
resolution. The story is spoken by the voice
of experience. We seek to encourage the true

CHAPTER 32  Phil Barker 631

BOX 32-1  The Ten Tidal Commitments: Essential Values of the Tidal Model—cont’d

language of psychiatric medicine or psychology. such as “evidence-based practice”—describes
Regrettably, many service users and consumers what has “worked” for other people. Although
often come to describe themselves in the colo- potentially useful, this should be used only if the
nial language of the professionals who have person’s available toolkit is found wanting.
diagnosed them. By valuing—and using—the 6. Craft the step beyond: The professional helper
person’s natural language, the Tidal practitio- and the person work together to construct an
ner conveys the simplest yet most powerful appreciation of what needs to be done “now.”
respect for the person. Any “first step” is a crucial step, revealing the
3. Develop genuine curiosity: The person is writ- power of change and potentially pointing to-
ing a life story but is in no sense an “open book.” ward the ultimate goal of recovery. Lao Tzu said
No one can know another person’s experience. that the journey of a thousand miles begins with
Consequently, professionals need to express a single step. We would go further: Any journey
genuine interest in the story so that they can begins in our imagination. It is important to
better understand the storyteller and the story. imagine—or envision—moving forward. Craft-
Often professionals are interested only in “what ing the step beyond reminds us of the impor-
is wrong” with the person or in pursuing particu- tance of working with the person in the “me
lar lines of professional inquiry—for example, now”: addressing what needs to be done now, to
seeking “signs and symptoms.” Genuine curiosity help advance to the next step.
reflects an interest in the person and the person’s 7. Give the gift of time: Although time is largely
unique experience, as opposed to merely classify- illusionary, nothing is more valuable. Often,
ing and categorizing features, which might be professionals complain about not having
common to many other “patients.” enough time to work constructively with the
4. Become the apprentice: The person is the world person. Although they may not actually “make”
expert on the life story. Professionals may learn time, through creative attention to their work,
something of the power of that story, but only if professionals often find the time to do “what
they apply themselves diligently and respectfully needs to be done.” Here, it is the professional’s
to the task by becoming apprentice-minded. We relationship with the concept of time that is
need to learn from the person what needs to be at issue, rather than time itself (Jonsson, 2005).
done, rather than leading. Ultimately, any time spent in constructive inter-
No one can ever know a person’s experience. personal communication, is a gift—for both par-
Professionals often talk “as if ” they might even ties). There is nothing more valuable than the
know the person better than they know them- time the helper and the person spend together.
selves. As Szasz noted: “How can you know more 8. Reveal personal wisdom: Only the person can
about a person after seeing him for a few hours, know himself or herself. The person develops a
a few days, or even a few months, than he knows powerful storehouse of wisdom through living
about himself? He has known himself a lot the writing of the life story. Often, people cannot
longer!” The idea that the person remains en- find the words to express fully the multitude,
tirely in charge of himself is a fundamental complexity, or ineffability of their experience,
premise” (Szasz, 2000). invoking powerful personal metaphors to convey
5. Use the available toolkit: The story contains something of their experience (Barker, 2002b).
examples of “what has worked” for the person A key task for the professional is to help the
in the past, or beliefs about “what might work” person reveal and come to value that wisdom,
for this person in the future. These represent so that it might be used to sustain the person
the main tools that need to be used to unlock throughout the voyage of recovery.
or build the story of recovery. The professional 9. Know that change is constant: Change is in-
toolkit—commonly expressed through ideas evitable because change is constant. This is the

Continued