alligood 8th edition_Neat

582 UNIT V Middle Range Nursing Theories

beyond the concerns generated by physical and cogni- end of life represent some of the most vulnerable indi-
tive decline. Other scholars broadened the theory to viduals to whom nurses may provide care. Although
include younger adults with life-limiting conditions an abundance of lay literature exists about the devel-
that may make them vulnerable to spiritual disequilib- opmental and transcendent experiences of end of
rium and depression. Recent studies by Reed and others life and dying, there is a dearth of systematic research
have extended the scope of the theory to include addi- into this human experience. The Self-Transcendence
tional populations of adolescent and adult age groups, Theory guides the initial questions and may undergo
patients and nonpatients, who may have increased further refinement as this inquiry progresses.
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).
Diverse personal and contextual variables impact Critique
the relationship between self-transcendence and well-
being. Although a number of studies have associated Clarity
older age with increased self-transcendence, younger Clarity and consistency are key criteria in the descrip-
research participants have also report self-transcen- tion of and critical reflection on a theory (Chinn &
dence views and behaviors and score high on self- Kramer, 2011). Theory clarity is evaluated by seman-
transcendence measures. During a long or short period tic clarity and structural clarity. Semantic consistency
in one’s life, a variety of human experiences (e.g., child- evaluates how consistent concepts are used with their
birth and parenting, illness and disability, caregiving, definitions and the basic assumptions of the theory.
creating a work of art or literature, spiritual perspec- Structural consistency involves assessing congruency
tives) all may evoke the pandimensional views and among the assumptions, theory purpose, concept
behaviors indicative of self-transcendence. Continued definitions, and connections among the concepts.
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
Reed received funding to study self-transcendence some readers. In terms of structural clarity, the rela-
as it relates to end-of-life decisions and well-being in tionships in the schematic model of the theory (see
patients and their family caregivers. People facing the Figure 29–1) are more fully defined and described in

CHAPTER 29 Pamela G. Reed 583

Reed’s past and forthcoming writings (Reed, 2013). generality, resulting in a theory that is applicable in
Structural consistency is good in that the identified many situations of health and healing.
relationships are logical and consistent.
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 Researchers may use different approaches and
in complexity somewhat as specific personal and en- empirical indicators to measure self-transcendence
vironmental factors and their relationships to the because the concept lends itself to a variety of ap-
major concepts are identified in clinical applications. proaches and measures that fit the clinical nursing
The major concepts and the number of relationships context of interest. Research findings that support a
generated by these concepts are minimal while still strong relationship among self-transcendence and
being meaningful and fairly comprehensive. well-being, as hypothesized by the theory, attest to the
theory’s empirical precision.
Generality
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-
cepts can be applied to anyone confronted with life Summary
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

and personal experiences of the theorist. The theoreti-
cal concepts are abstract, but concrete subconcepts asked him if he thought his wife would have had
have been developed and studied extensively in a a similar experience if he had been the first to die.
number of populations. Research findings support the His response was that his wife would have had an
hypothesized relationships among self-transcendence even more difficult time adjusting. The nurse and
views, behaviors, and well-being. These studies in- Mr. Jones then spent some time reflecting on and
crease nurses’ understanding that, no matter how talking about his response. The nurse’s initial ques-
desperate a health situation, people retain a capacity tion and Mr. Jones’s resulting insight that his grief
for personal development that is associated with feel- was not as bad as his wife’s would have helped him
ings of well-being. transcend his immediate experience of loss and find
Research findings have suggested ways in which some meaning in his grief.
nurses promote self-transcendence views and behav- This illustration is an example of an inward
iors in themselves and in their clients. Further re- expansion of self-conceptual boundaries indicative
search is planned to examine interventions promoting of self-transcendence. Other expressions of self-
self-transcendence and studies of personal and con- transcendence might help Mr. Jones facilitate his
textual factors that modify relationships among the own healing and regain a measure of well-being.
theory concepts. In addition, qualitative research ap- In terms of outward expansion, Mr. Jones, with
proaches assist in gaining a deeper understanding of some encouragement, might reach out to his son’s
the concept of self-transcendence as a nursing process family to begin to reconnect to the world outside
and as it expresses the depth and changing complexity himself. Walking to and from his home to theirs
of human beings. could expand his sensory world and provide op-
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. Offering at a future time to use the skills he
Two of the children live several hundred miles away, learned while caring for his wife through volun-
but one son lives with his wife and two preschool teering with hospice would be an example of tran-
children less than 1 mile from Mr. Jones’s home. 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 Transpersonal self-transcendence is another
home much of the time, he was grateful that he important experience for Mr. Jones. Although he
could care for her. He now is alone in their home, was unable to attend church services for several
is very lonely, is uninterested in preparing meals years, he had in the past found worshiping with
or eating, and lacks energy to return to his former others a source of comfort. His spiritual life might
community and social activities or even to interact even be expanded to consider new spiritual dimen-
with his son and family. 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
1. Consider the pandimensional aspect of self- how might you have facilitated self-transcendence
transcendence, and list examples of when you and a more positive outcome?
experienced expanded boundaries in your own 3. What nursing intervention could you do to facili-
life. Identify how this expanded awareness influ- tate self-transcendence in a woman with acquired
enced your health or sense of well-being in each immunodeficiency syndrome who is dying? Why
example. would you select this nursing action?
2. What are some factors in the life of patients you 4. How might you apply the Self-Transcendence
cared for recently that negatively or positively in- Theory to help a frail 95-year-old person living in a
fluenced their self-transcendence? If negative, nursing home maintain or gain a sense of well-being?


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



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BIBLIOGRAPHY
Primary Sources Reed, P. G. (2011). Reflections on the ontology and episte-
Books mology of complexity science and nursing science. In
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N. B. C. Shearer (Eds.), Nursing knowledge and theory Fitzpatrick, J. J., & Reed, P. G. (1980). Stress in the crisis
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nursing praxis as a catalyst for generating knowledge. psychosocial well-being on health risk behaviors among
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science of nursing practice (pp. 123–132). New York: Reed, P. G. (1986). Death perspectives and temporal vari-
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Reed, P. G. (1985). Early and middle adulthood. In D. L. 10, 443–454.
Critchley & J. T. Maurin (Eds.), The clinical specialist in Reed, P. G. (1986). Religiousness among terminally ill
psychiatric-mental health nursing: Theory, research, and and healthy adults. Research in Nursing and Health, 9,
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Reed, P. G. (1986). The developmental conceptual frame- Reed, P. G. (1987). Spirituality and well-being in terminally
work: Nursing reformulations and applications for family ill hospitalized adults. Research in Nursing and Health,
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ing: Four approaches (pp. 69–92). New York: Appleton- Reed, P. G. (1989). Mental health of older adults [includes
Century-Crofts. commentaries and author’s response]. Western Journal
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Edinburgh, Scotland: Churchill Livingstone. ill hospitalized adults and well adults. Applied Nursing
Reed, P. G. (2010). Pamela Reed’s theory of self-transcendence. Research, 4(3), 122–128.
In M. Parker and M. Smith, (Eds.), Nursing theories and Reed, P. G. (1991). Spirituality and mental health of older
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nursing practice (3 ed.) (pp. 417–427). Philadelphia: adults: Extant knowledge for nursing. Family and Com-
F.A. Davis. munity Health, 14(2), 14–25.

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Reed, P. G. (1992). An emerging paradigm for the investiga- in nursing practice, research, and education by Carol
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Reed, P. G. (1994). The spirituality factor: Response to “The Dissertation
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port, and depression in care giving and non-care giving Reed, P. G. (1982). Well-being and perspectives on life and
wives.” Scholarly Inquiry for Nursing Practice: An Inter- death among death-involved and non-death-involved in-
national Journal, 8(4), 391–396. dividuals. Unpublished doctoral dissertation, Wayne
Reed, P. G. (1995). A treatise on nursing knowledge devel- State University, Detroit.
opment for the 21st century: Beyond postmodernism. Secondary Sources
Advances in Nursing Science, 17(3), 70–84. Selected Book Chapters
Reed, P. G. (1998). A holistic view of nursing concepts and Coward, D. D. (2000). Making meaning within the experience
theories in practice. Journal of Holistic Nursing, 16(4), of life-threatening illness. In G. Reker & K. Chamberlain
4415–4419. (Eds.), Existential meaning: Optimizing human develop-
Reed, P. G. (1998). Response to commentary on “The ontol- ment across the life span (pp. 157–170). Thousand Oaks,
ogy of the discipline of nursing”: Breaking through a (CA): Sage.
breakdown in logic. Nursing Science Quarterly, 11(4), Haase, J., Britt, T., Coward, D., Kline Leidy, N., & Penn, P.
146–148. (2000). Simultaneous concept analysis: A strategy for
Reed, P. G. (2006). Neomodernism and evidence based developing multiple interrelated concepts. In B. Rodgers
nursing: The production of nursing knowledge. Nursing & K. Knafl (Eds.), Concept development in nursing:
Outlook, 54(1), 36–38. Foundations, techniques, and applications (2nd ed.,
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Reed, P. G. (2006). Theory and nursing practice. Nursing Selected Journal Articles
Science Quarterly, 19(2), 116. Budin, W. C. (2001). Birth and death: Opportunities for self-
Reed. P. G. (2008). The practice of nursing science: Crossing transcendence. Journal of Perinatal Education, 10(2).
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Reed, P. G. (2009). Demystifying self-transcendence for Chiu, L. (2000). Lived experience of spirituality in Taiwanese
mental health nursing practice and research. Archives of women with breast cancer. Western Journal of Nursing
Psychiatric Nursing, 23, 397–400. Research, 22, 29–53.
Reed, P. G., & Rolfe, G. (2006). Nursing knowledge and Chiu, L., Emblen, J., van Hofwegen, L., Sawatzky, R., &
nurses’ knowledge: A reply to Mitchell and Bournes. Meyerhoff, H. (2004). An integrative review of the
Nursing Science Quarterly, 19(2), 120–122. concept of spirituality in the health sciences. Western
Reed, P. G., & Runquist, J. (2007). Reformulation of a meth- Journal of Nursing Research, 26(4), 405–428.
odological concept in grounded theory. Nursing Science Magill, L. (2009). The spiritual meaning of pre-loss music
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Book Reviews Phillips-Salimi, C. R., Haase, J. E., Kintner, E. K., Monahan,
Reed, P. G. (1999). Nursing theorists and their work by P. O., & Azzouz, F. (2007). Psychometric properties of
M. Tomey & M. Alligood. Nursing Science Quarterly, the Herth Hope Index in adolescents and young adults
12(3), 266–268. with cancer. Journal of Nursing Measurement, 15(1),
Reed, P. G. (1999). Theory and nursing: Integrated knowl- 3–23.
edge development by P. Chinn & M. Kramer. Nursing Ramer, L., Johnson, D., Chan, L., & Barrett, M. T. (2006).
Leadership Forum, 4(2), 2–3. The effect of HIV/AIDS disease progression on spiritual-
Reed, P. G. (2001). Nursing as a spiritual practice: A con- ity and self-transcendence in a multicultural population.
temporary application of Florence Nightingale’s views Journal of Transcultural Nursing, 17(3), 280–289.
by J. Macrae. Nursing Leadership Forum, 6(2), 90. Rawnsley, M. (2000). Response to Reed’s nursing reformu-
Reed, P. G. (2003). Nursing theories and nursing practice lation: Historical and philosophic foundations. Nursing
by Marilyn Parker. Nursing Science Quarterly, 16(2), Science Quarterly, 13(2), 134–136.
175–176. Reese, C. G., & Murray, R. B. (1996). Transcendence: The
Reed, P. G. (2005). Giving voice to what we know: Margaret meaning of great-grandmothering. Archives of Psychiatric
Newman’s theory of health as expanding consciousness Nursing, 10(4), 245–251.

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Runquist, J. J. (2006). Persevering through postpartum fatigue. Decker, I. (1998). Moral reasoning, self-transcendence,
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36(1), 28–37. dwelling elders. (Doctoral dissertation). Available from
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shadow of death: Adjusting to a recurrent breast cancer Diener, J. E. S. (2003). Personal narrative as an intervention
illness. Qualitative Health Research, 19(8), 1116–1130. to enhance self-transcendence in women with chronic ill-
Shearer, N. B. (2007). Toward a nursing theory of Health ness. (Unpublished doctoral dissertation). University of
Empowerment in Homebound Older Women. Journal Missouri, St. Louis.
of Gerontological Nursing, 33(12), 38–45. Egan, S. R. (1996). The relationship of meaning of death field
Teixeira, M. E. (2008). Self-Transcendence: a concept for patterns to well-being, spiritual perspective and perception
nursing practice. Holistic Nursing Practice, 22(1), 25–31. of health in healthy older adults. (Unpublished master’s
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Bouwkamp, C. I. (1996). The relationships among depression, the lives of seven exemplary aged women. (Unpublished doc-
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Coward, D. (1990). Correlates of self-transcendence in women Kannan, L. M. (2008). Spirituality and symptom manage-
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3368209).

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Kidd. L. (2009). The effect of a poetry writing intervention Runquist, J. J. (2006). Persevering through postpartum fatigue.
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30

CHAP TER



















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. Throughout her career, Wiener’s excellence earned
in 1978. After receiving her Ph.D., Wiener accepted her several meritorious awards and honors. In 2001, she
the position of assistant research sociologist at UCSF, gave the opening lecture in an international series enti-
where she remained for her entire professional career, tled “Critiquing Health Improvement” at Nottingham
attaining the rank of full professor in 1999. 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

she was an honoree at the UCSF assemblage “Celebrat- respectively. Dodd worked as an instructor in nursing
ing Women Faculty,” an inaugural event honoring at the University of Washington following graduation
women faculty for their accomplishments. Wiener’s col- with her master’s degree. By 1977, Dodd returned
laborative relationship with the late Anselm Strauss to academe and completed a Ph.D. in nursing from
(co-originator with Barney Glaser of grounded theory) Wayne State University. She then accepted the posi-
and her prolific experience in grounded theory meth- tion of Assistant Professor at UCSF. During her
ods are evidenced by her invited presentations at the tenure there, Dodd advanced to the rank of full pro-
Celebration of the Life and Work of Anselm Strauss at fessor, serving as Director for the Center for Symp-
UCSF in 1996, at a conference entitled Anselm Strauss, tom Management at UCSF. In 2003, she was awarded
a Theoretician: The Impact of His Thinking on German the Sharon A. Lamb Endowed Chair in Symptom
and European Social Sciences in Magdeburg, Germany Management at the UCSF School of Nursing.
in 1999, and at the First Anselm Strauss Research Dodd’s exemplary program of research is focused
Colloquium at UCSF in 2005. Wiener is highly sought in oncology nursing, specifically, self-care and symp-
as a methodological consultant to researchers and stu- tom management. Her outstanding record of funded
dents from a variety of specialties. research provides evidence of the superiority and
Dissemination of research findings and method- significance of her work. She has skillfully woven
ological papers is a hallmark of Wiener’s work. She modest internal and external funding with 23 years of
produced a steady stream of research and theory ar- continuous National Institutes of Health funding
ticles from the mid-1970s. In addition, she authored to advance her research. Her research trajectory has
or coauthored several books (Strauss, Fagerhaugh, advanced impeccably as she progressively utilized
Suczek, et al., 1997; Wiener, 1981, 2000; Wiener & both descriptive studies and intervention studies
Strauss, 1997; Wiener & Wysmans, 1990). Her early employing randomized clinical trial methodologies to
works focused on illness trajectories, biographies, and extend an understanding of complex phenomena in
the evolving medical technology scene. From the late cancer care.
1980s to 1990s, Wiener focused on coping, uncer- Dodd’s research was designed to test self-care in-
tainty, and accountability in hospitals. Her study ex- terventions (PRO-SELF Program) to manage the side
amining quality management and redesign efforts in effects of cancer treatment (mucositis) and symptoms
hospitals and the interplay of agencies and hospitals of cancer (fatigue, pain). This research, entitled The
around accountability led to a book, The Elusive Quest PRO-SELF: Pain Control Program—An Effective Ap-
(Wiener, 2000). In this book, Wiener describes the proach for Cancer Pain Management, was published
poor fit of quality improvement techniques borrowed in Oncology Nursing Forum (West, Dodd, Paul,
from corporate industry in a hospital setting where et al., 2003). Dodd teaches in the Oncology Nursing
professionals from diverse disciplines provide highly Specialty. In 2002, she instituted two new courses
sophisticated care to patients whose individual biog- (“Biomarkers I and II”) that were developed by the
raphies defy categorization and whose course of ill- Center for Symptom Management Faculty Group.
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
having received the Oncology Nursing Society/
Marylin J. Dodd Schering Excellence in Research Award (1993,
Marylin J. Dodd was born in 1946 in Vancouver, 1996), the Best Original Research Paper in Cancer
Canada. She qualified as a registered nurse after Nursing (1994, 1996), the Oncology Nursing Soci-
studying at Vancouver General Hospital in British ety Bristol-Myers Distinguished Researcher Career
Columbia, Canada. She continued her education, Award (1997), and the Oncology Nursing Society/
earning a bachelor’s and a master’s degree in nursing Chiron Excellence of Scholarship and Consistency
from the University of Washington in 1971 and 1973, 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-
Dodd’s record in research dissemination is equally cal processes of self. Coping is often described as a
illustrious. Her volume of original publications be- compendium of strategies used to manage the dis-
gan in 1975. By the early 1980s, she was publishing ruption, attempts to isolate specific responses to one
multiple, focused articles each year, and this pace has event that is lived within the complexity of life con-
only accelerated. She has authored or coauthored 130 text, or assigned value labels to the responsive behav-
data-based peer-reviewed journal articles, seven iors (e.g., good or bad) that are described collectively
books and many book chapters, and numerous edito- as coping. Yet, the complex interplay of physiological
rials, conference proceedings, and review papers disruption, interactions with others, and the con-
(1978, 1987, 1988, 1991, 1997, 2001, 2004). Her many struction of biographical conceptions of the self war-
presentations at scientific gatherings around the rants a more sophisticated perspective of coping.
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
Dodd’s active service to the university, School of experience of disruption related to illness within the
Nursing, Department of Physiological Nursing, and changing contexts of interactional and sociological
to numerous professional and public organizations processes that ultimately influence the person’s re-
and journal review boards augments her outstand- sponse to such disruption. This theoretical approach
ing record of service to the profession of nursing. defines this theory’s contribution to nursing: coping is
Despite the breadth and volume of these activities, not a simple stimulus-response phenomenon that can
she is an active teacher and mentor. Dodd is the be isolated from the complex context of life. Life is
faculty member of record for several graduate centered in the living body, therefore physiological
courses and carries a significant advising load in the disruptions of illness permeate other life contexts to
master’s, doctoral, and postdoctoral programs at create a new way of being, a new sense of self. Re-
UCSF. From this brief overview of her amazing ca- sponses to the disruptions caused by illness are inter-
reer, it is clear that Dodd is an exemplar of excel- woven into the various contexts encountered in one’s
lence in nursing scholarship. life and the interactions with other players in those
life situations.
Within this sociological framework, Wiener and
Theoretical Sources 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

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




MAJOR CONCEPTS & DEFINITIONS
Life is situated in a biographical context. Concep- flow of the life. The domains of illness-related uncer-
tions of self are rooted in the physical body and are tainty vary in dominance across the illness trajectory
formulated based on the perceived capability to per- (Table 30–1) through a dynamic flow of perceptions
form usual or expected activities to accomplish the of self and interactions with others.
objectives of varied roles. Interactions with others The activities of life and of living with an illness
are a major influence on the establishment of the are forms of work. The sphere of work includes the
conception of self. As varied role behaviors are en- person and all others with whom he or she interacts,
acted, the person monitors reactions of others and a including family and health care providers. This
sense of self in an integrated process of establishing network of players is called the total organization.
meaning. Identity, temporality, and body are key The ill person (or patient) is the central worker;
elements in the biographical context, as follows: however, all work takes place within and is influ-
n Identity: the conception of self at a given time that enced by the total organization. Types of work are
unifies multiple aspects of self and is situated in organized around the following four lines of trajec-
the body tory work performed by patients and families:
n Temporality: biographical time reflected in the con- 1. Illness-related work: diagnostics, symptom man-
tinuous flow of the life course events; perceptions of agement, care regimen, and crisis prevention
the past, present, and possible future interwoven 2. Everyday-life work: activities of daily living,
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
A major contribution of this work was the delin- illness trajectory for different players in the organiza-
eation of types of uncertainty abatement work (Table tion. Those enacting these strategies affected the
30–2). These activities were enacted to lessen the conception of self when they monitored others’ re-
impact of the varied states of uncertainty induced by sponses to the strategy as they attempted to manage
undergoing cancer chemotherapy. These strategies living with illness.




TABLE 30-1 Illness Trajectory: States of Uncertainty
Domain Sources of Uncertainty Dimensions of Uncertainty

UNCERTAIN TEMPORALITY Life is perceived to be in a Loss of temporal predictability prompts
constant state of flux related concerns surrounding:
to illness and treatment.
Taken-for-granted expectations The self of the past is viewed • Duration: how long
regarding the flow of life events differently (e.g., the way it used • Pace: how fast
are disrupted. to be). • Frequency: how often the experience
A temporal disjunction in the Expectations of the present of time is distorted (i.e., stretched out,
biography self are distorted by illness constrained, or limitless)
and treatment.
Anticipation of the future self
is altered.
UNCERTAIN BODY Faith in the body is shaken Ambiguity in reading body signs.
(body failure). Concerns surrounding:
Changes related to illness and The conception of the former • What is being done to the body
treatment are centered in body (the way it used to be) • Jeopardized body resistance
one’s ability to perform usual comingles with the altered state • Efficacy and risks of treatment
activities involving appearance, of the body at present and the • Disease recurrence
physiological functions, and changed expectations for how
response to treatment. the body may perform in the
future.
UNCERTAIN IDENTITY Body failure and difficulty reading Expected life course is shattered.
Interpretation of self is distorted the new body upset the former Evidence gleaned from reading the body
as the body fails to perform in conception of self. is not interpretable within the usual
usual ways, and expectations Skewed temporality impairs the frame of understanding.
related to the flow of events expected life course. Hope is sustained despite changing
(temporality) are altered by circumstances.
disease and treatment.



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

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
Directing care
Balancing expertise with super-medicalization
Seeking reinforcing comparisons Comparing self with persons who are in worse condition to reassure self that it is
not as bad as it could be
Engaging in reviews Looking back to reinterpret emergent symptoms and interactions with others in the
organization
Setting goals Looking toward the future to achieve desired activities
Covering up Masking signs of illness or related emotions
Bucking up to avoid stigma or to protect others
Finding a safe place to let down Establishing a place where, or people with whom, true emotions and feelings could
be expressed in a supportive atmosphere
Choosing a supportive network Selective sharing with individuals deemed to be positive supporters
Taking charge 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-
Meticulous attention was paid to consistency in cepts, dimensions, variations, and negative cases.
data collection: family members were consistent and However, in this project, the data had been col-
present for each interview, the interview guide was lected previously using a structured interview guide;
structured, and the same nurse-interviewer con- thus, this was a secondary analysis of an established
ducted each data collection point for a given family. data set.
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
process around which the theory is explicated: tolerat- Major Assumptions
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
When considering the use of adapted grounded sheds some light on a theoretical interpretation of
theory methods to analyze preexisting empirical these concepts. Wiener and Dodd’s Theory of Illness
evidence, several insights support the integrity of Trajectory explicates major assumptions that reflect its
this work. First, Wiener was well prepared to ad- derivation within a sociological perspective (Wiener &
vance new applications of the method from training Dodd, 1993). Closer examination of each assumption
and experience as a grounded theorist. The method- reveals several related basic premises undergirding the
ological credibility of this researcher supports her theory.
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
evidence culled through the interviews conducted in Theoretical Assertions
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

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

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, These insights demonstrate an evolving body of
in this study, inductive reasoning produced data- research related to uncertainty, control, and the ill-
based theory that identifies a broad range of strate- ness trajectory. Rather than assume that uncertainty
gies related to tolerating and abating uncertainty is a negative aspect of life, researchers must remain
(Lazarus & Folkman, 1984; Mishel, 1997). The varia- open to positive transformational outcomes of living
tion and range of abatement strategies identified in through uncertainty. Wiener and Dodd’s original rec-
this theory are a unique and significant contribution ommendation remains salient, to expand the scope of
to the body of research in coping with the uncer- the illness trajectory framework (Wiener & Dodd,
tainty of illness. 1993). The illness trajectory theoretical framework is
especially useful for understanding the variations in
uncertainty and control and for gaining a fuller per-
Further Development spective of the human experience with cancer and
In an earlier response article to the original publica- other conditions where the significance of uncer-
tion, Oberst (1993) took issue with the delimitation of tainty and control may vary.
the concept of uncertainty to loss of control. This criti-
cism was echoed by McCormick (2002), who theoreti- Critique
cally positioned loss of control in the uncertainty cycle
rather than as a manifestation of a state of uncertainty. Clarity
In their work on end-of-life caregiving, Penrod and One concern in the clarity in Wiener and Dodd’s
colleagues (2012, 2011) posit that minimizing uncer- Theory of Illness Trajectory is the delimitation of the
tainty by increasing confidence and control is desirable concept of uncertainty to a loss of control. This lim-
for patients and their family caregivers transitioning ited conceptual perspective of uncertainty is clearly
through the end-of-life trajectory. Further research set forth in the work; therefore, this issue does not
into the concept of control is warranted to untangle the create a significant or fatal flaw in the work. The the-
conceptual boundaries and linkages between control ory is delineated clearly and well supported by previ-
and uncertainty throughout the illness trajectory. 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-
Penrod (2007) helped to clarify the concept of un- ciological framework that is applied to a phenomenon
certainty with a phenomenological investigation that of concern to nursing: chemotherapeutic treatment of

602 UNIT V Middle Range Nursing Theories

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

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- In proactively educating the patient-family sys-
tients and families who have become “professional tem, consider the varied domains of uncertainty
patients” as they learn to use complex technical and the varied forms of uncertainty abatement
jargon about their treatment, laboratory values, or work. To understand the patient-family trajectory,
illness (Wiener & Dodd, 1993). These “junior doc- assessment data are critical. For example, although
tors” attempt to earn a modicum of control as they well-developed protocols for symptom manage-
manage treatment by requesting particular staff ment or palliation are available, such protocols are
members to perform specific tasks (Dodd, 1997, useless if patients or caregivers fail to describe the
p. 988). Care providers have a tendency to view this extent of symptoms because they perceive these
behavior as a positive hallmark of assuming self- “hassles” or “bothers” as trivial in the face of life-
care and, therefore, often reinforce such behaviors. 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
1. How does an illness trajectory differ from a 3. As an advanced clinician, you are intimately in-
course of illness? Consider how the application of volved in the work of managing an illness. Based
each perspective yields different foci for interven- on your understanding of the work of illness
tion in a health condition. Which perspective is management espoused in the Theory of Illness
most congruent with your views of nursing? Trajectory, what nursing behaviors have you
2. Considering your clinical experiences, identify observed that exacerbate feelings of loss of
examples of how patients and their families have control or uncertainty in patients?
experienced health-related uncertainty. Was un- 4. What factors (personal, environmental, or organi-
certainty related to a loss of control? What are the zational) contributed to the nursing behaviors
conditions under which health-related uncertainty observed in question 3? What nursing interven-
is perceived as a negative life event versus those tions would create a less troubling trajectory for
when it is perceived as a growth-enhancing event? patients and families in the situations observed?

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

604 UNIT V Middle Range Nursing Theories

n Jansen, C. E., Miaskowski, C. A., Dodd, M. J., & n West, C. M., Dodd, M. J., Paul, S. M., Schumacher,
Dowling, G. A. (2007). A meta-analysis of the K., Tripathy, D., Koo, P., et al. (2003). The PRO-
sensitivity of various neuropsychological tests SELF: Pain control program—An effective approach
used to detect chemotherapy-induced cognitive for cancer pain management. Oncology Nursing
impairment in patients with breast cancer. Oncol- Forum, 30, 65–73.
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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Greenspan, D., MacPhil, L., et al. (1999). Risk factors Katapodi, M. C., Facione, N. C., Humphreys, J. C., & Dodd,
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Edrington, J., Miaskowski, C., Dodd, M., Wong, C., & Katapodi, M. C., Facione, N. C., Miaskowski, C., Dodd, M. J.,
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Pain and Symptom Management, 28(3), 225–232. A meta-analytic review. Preventative Medicine, 38(4),
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(2002). The self-reported likelihood of patient delay in Kim, J. E., Dodd, M., West, C., Paul, S., Facione, N.,
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Fletcher, B. S., Dodd, M. J., Schumacher, K. L., & Miaskowski, cer pain management. Oncology Nursing Forum, 31(6),
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Fletcher, B. S., Paul, S. M., Dodd, M. J., Schumacher, K., of health-related quality of life over 24 months post-liver
West, C., Cooper, B., et al. (2008). Prevalence, severity, transplantation. Clinical Transplantation 19(1), 1–9.
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tate cancer. Journal of Clinical Oncology, 26(4), 599–605. trial of exercise and dietary counseling after liver trans-
Hilton, J. F., MacPhil, L. A., Pascasio, L., Sroussi, H. Y., plantation. American Journal of Transplantation, 6,
Cheikh, B., LaBao, M. E., et al. (2004). Self-care inter- 1896–1905.
vention to reduce oral candidiasis recurrence in HIV- Kris, A. E., & Dodd, M. J. (2004). Symptom experience of
seropositive persons: A pilot-study. Community Dentistry adult hospitalized medical-surgical patients. Journal of
and Oral Epidemiology, 32(3), 190–200. Symptom Management, 28(5), 451–459.
Hinds, P. S., Baggott, C., DeSwarte-Wallace, J., Dodd, M., Lee, K., Cho, M., Miaskowski, C., & Dodd, M. (2004).
Haase, J., Hockenberry, M., et al. (2003). Functional in- Impaired sleep and rhythms in persons with cancer.
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Mandrell, B. N., Ruccione, K., Dodd, M. J., Moore, J., Nelson, management regimens into practice at home. Journal of
A. E., Pollock, B., et al. (2000). Consensus statements. Pain and Symptom Management, 23(5), 369–382.
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patients. Seminars in Oncology Nursing, 16(4), 315–316. Dibble, S. (2000). Family caregiving skill: Development of
McLemore, M. R., Miaskowski, C., Aouizerat, B. E., Chen, the concept. Research in Nursing & Health, 23, 191–203.
L. E., & Dodd, M. (2008). Rules of cell development Schumacher, K. L., West, C., Dodd, M., Paul, S. M., Tripathy,
and their application to biomarkers for ovarian cancer. D., Koo, P., et al. (2002). Pain management autobiogra-
Oncology Nursing Forum, 35(3), 403–409. phies and reluctance to use opioids for cancer pain man-
Miaskowski, C., Cooper, B. A., Paul, S. M., Dodd, M., Lee, agement. Cancer Nursing, 25(2), 125–133.
K., Aouizerat, B. E., et al. (2006). Subgroups of patients Shih, A., Miaskowski, C., Dodd, M. J., Stotts, N. A., &
with cancer with different symptoms experiences and MacPhil, L. (2002). A research review of the current
quality-of-life outcomes: A cluster analysis. Oncology treatments for radiation-induced oral mucositis in
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Miaskowski, C., Dodd, M., & Lee, K. (2004). Symptom Forum, 29(7), 1063–1080.
clusters: The new frontier in symptom management Shih, A., Miaskowski, C., Dodd, M. J., Stotts, N. A., &
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Oncology, 22(90), 1713–1720. Voss, J. G., Dodd, M., Portillo, C., & Holzemar, W. (2006).
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media interactive patient education on knowledge,

31

CHAP TER



















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 Early in her professional career Eakes worked in
Carolina. She received a Diploma in Nursing from acute and community-based psychiatric and mental
Watts Hospital School of Nursing in Durham, North health settings. In 1980, she joined the faculty at
Carolina, in 1966, and she graduated Summa Cum the East Carolina University School of Nursing in
Laude from North Carolina Agricultural and Technical Greenville, North Carolina.
State University with a baccalaureate in nursing Eakes’s interest in issues related to death, dying,
in 1977. Eakes completed her M.S.N. in 1980 at the grief, and loss relates to the 1970s, when she sustained
University of North Carolina at Greensboro and her life-threatening injuries in an automobile crash. This
Ed.D. in 1988 at North Carolina State University. Eakes near-death experience heightened her awareness of
received a federal traineeship for graduate study at the 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

people are to deal with individuals facing their counselors for North Carolina and local and regional
mortality and the general lack of understanding hospice volunteers. Eakes is active in efforts to
of grief reactions experienced in response to loss improve the quality of care at the end of life and is a
situations. Motivated by this insight, her research member of the Board of Directors of the End of
investigated death anxiety among nursing personnel Life Care Coalition of Eastern North Carolina.
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
In 1983, Eakes established a community-service integration of research into teaching practices. In 1999,
support group for individuals diagnosed with cancer Eakes received the Best of Image award for theory
and their significant others that she continues to publication presented by the Sigma Theta Tau
co-facilitate. Leadership of this group alerted her to International Honor Society of Nursing for her article,
the ongoing nature of grief reactions associated “Middle-Range Theory of Chronic Sorrow.” She was
with potentially life-threatening and chronic illness. a finalist in the Oncology Nursing Forum Excellence
While presenting her research at a Sigma Theta Tau in Writing Award in 1994. Other honors and awards
International conference in Taipei, Taiwan, in 1989, include the North Carolina Nurse Educator of the Year
she attended a presentation on chronic sorrow by by North Carolina Nurses Association in 1991 and
Mary Lermann Burke. She immediately made the Outstanding Researcher by the Beta Nu Chapter
connection between Burke’s description of chronic of Sigma Theta Tau International Honor Society for
sorrow in mothers of children with a myelomeningo- Nurses in 1994 and 1998. Eakes has served as a re-
cele disability and her observations of grief reactions viewer for Qualitative Health Research, an international
among the cancer support group members. interdisciplinary journal.
After the conference, Eakes contacted Burke to Eakes is Professor Emeritus at East Carolina
explore the possibility of collaborative research University College of Nursing. Prior to her retirement,
endeavors. They scheduled a meeting that included she taught undergraduate courses in psychiatric
Burke and her colleague, Margaret A. Hainsworth, and mental health nursing and nursing research, a
and Carolyn Lindgren, a colleague of Hainsworth. master’s-level course in nursing education, and an
The Nursing Consortium for Research on Chronic interdisciplinary graduate course titled “Perspectives
Sorrow (NCRCS) was an outcome of the first meeting on Death/Dying.” Currently, she is Director of Clinical
in the summer of 1989. Education at Vidant Medical Center in Greenville, NC
Subsequent to the NCRCS’s establishment, mem- (G. Eakes, personal communication, 2012).
bers conducted numerous collaborative qualitative
research studies on populations of individuals Mary Lermann Burke
affected with chronic or life-threatening conditions, Mary Lermann Burke was born in Sandusky, Ohio.
on family caregivers, and on bereaved individuals. She was awarded her initial nursing diploma from the
Eakes focused her studies on those diagnosed with Good Samaritan Hospital School of Nursing in
cancer, family caregivers of adult mentally ill children, Cincinnati in 1962, and a postgraduate certification
and individuals who have experienced the death of from Children’s Medical Center in the District of
a significant other. From 1992 to 1997, Eakes received Columbia. After several years of experience in pedi-
three research grant awards from the East Carolina atric nursing, Burke graduated Summa Cum Laude
University School of Nursing and two research with a bachelor’s degree in nursing from Rhode Island
grants from the Beta Nu Chapter of Sigma Theta Tau College in Providence. In 1982, she received her
International to support her research projects. master’s degree in parent-child nursing from Boston
In addition to her professional publications, University, where she was also awarded a Certificate
Eakes has conducted numerous presentations on in Parent-Child Nursing and Interdisciplinary Train-
issues related to grief-loss and death and dying to pro- ing in Developmental Disabilities from the Child
fessionals and lay groups at the local, state, national, Development Center of Rhode Island Hospital and
and international levels. She was heavily involved the Section on Reproductive and Developmental
with the training of sudden infant death syndrome Medicine at Brown University in Providence. In 1989,

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

612 UNIT V Middle Range Nursing Theories

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

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

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

614 UNIT V Middle Range Nursing Theories

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

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,
et al., 1992). Suggestions are provided on how nurses
Theoretical Assertions 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
2. Chronic sorrow is cyclical in nature. competent professional (Eakes, Burke, Hainsworth,
3. Predictable internal and external triggers of height- et al., 1993).
ened grief can be categorized and anticipated.
4. Humans have inherent and learned coping strate- NCRCS-Derived Literature
gies that may or may not be effective in regaining The original NCRCS work is referenced in publica-
normal equilibrium when experiencing chronic tions in practice-focused journals. Several non-
sorrow. NCRCS nurse authors published articles that cite
5. Health care professionals’ interventions may or NCRCS studies directed to practicing clinicians
may not be effective in assisting the individual to (Gedaly-Duff, Stoger, & Shelton, 2000; Gordon, 2009;
regain normal equilibrium. Kerr, 2010; Krafft & Krafft, 1998; Scornaienchi, 2003).
6. A human who experiences a single or an ongoing Interdisciplinary practice-focused literature provided
loss will perceive a disparity between the ideal and guidance useful to nurses (Doka, 2004; Harris &
reality. Gorman, 2011; Miller, 1996).
7. The disparity between the real and the ideal leads The work listed above in the practice section is
to feelings of pervasive sadness and grief (Eakes, also educationally related. The next section presents
Burke, & Hainsworth, 1998). evidence of undergraduate, graduate, and continuing
education support of the NCRCS’s work on chronic
sorrow’s relevance in the educational community.
Logical Form
This theory is based on a series of qualitative studies. Education
Through the analysis of 196 interviews, the middle- Undergraduate Education
range Theory of Chronic Sorrow evolved. With the Standardized Nursing Languages. Literature on stan-
empirical evidence, the NCRCS theorists described dardized nursing languages reveals that chronic
the phenomenon of chronic sorrow, identified com- sorrow is a diagnostic category (NANDA, 2011) with
mon triggers of re-grief, and described internal coping related expected outcomes and suggested interven-
mechanisms and the role of nurses in the external tions (Johnson, Moorhead, Bulechek, et al., 2012).
management of chronic sorrow. Evidence of the Comparison of the definitions of chronic sorrow used
theoretical assumptions is clear in empirical data. by the North American Nursing Diagnosis Associa-
tion International (NANDA-I) and the NCRCS (Eakes,
Acceptance By the Nursing Community Burke, & Hainsworth, 1998) reveal essentially similar
dimensions. Several widely used nursing diagnosis
Practice textbooks (Ackley & Ladwig, 2011; Carpenito-Moyet,
NCRCS-Original Work 2010; Doenges, Moorhouse, & Murr, 2010) cite the
The series of NCRCS studies, which form the founda- work of the NCRCS and/or authors who used the
tion of the middle-range Theory of Chronic Sorrow NCRCS’s work to explicate linkages among chronic
(Eakes, Burke, & Hainsworth, 1998), are replete with sorrow as a diagnostic category, intervention, and
practice applications. Each article relates the findings to outcome. Linkages among diagnostic categories in the
clinical nursing practice (Burke, Eakes, & Hainsworth, North American Diagnostic Association International
1999; Eakes, 1993; Eakes, 1995; Hainsworth, 1994; (NANDA-I), the Nursing Outcomes Classification

616 UNIT V Middle Range Nursing Theories

(NOC), and the Nursing Interventions Classification Adult children with the following:
(NIC) (Johnson, Moorhead, Bulechek, et al., 2012) • Cerebral palsy (Masterson, 2010; Wee, 2010)
provide educational applications for undergraduate
nursing students and educators—for nursing students Continuing Education
learning clinical decision processes and for nurse Several authors used the consortium’s work on
educators designing curricula and teaching clinical chronic sorrow in articles, offered for continuing
decision processes. Moreover, the linkages focus care education credit at the time of publishing for clini-
planning on outcomes, an essential step in teaching cians who work with families with chronically ill
evidence-based practice (Pesut & Herman, 1998). members (Doornbos, 1997; Hobdell, Grant, Valencia,
et al., 2007; Mallow & Bechtel, 1999; Meleski, 2002;
Graduate Research Education: Nursing Melnyk, Feinstein, Moldenhouer, et al., 2001).
The use of the NCRCS’s theoretical work in unpub- Drench’s (2003) course for physical therapists and
lished master’s theses and doctoral dissertations and in physical therapy assistants presented content on loss
dissertation-related articles is evidence of graduate and grief that included the NCRCS’s work.
nursing education use. Studies are listed as follows and
are categorized according to graduate level and topic.
• Master’s theses Research
• Chronic sorrow in mothers of chronically ill A review of published research that used the
children (Golden, 1994; Shumaker, 1995) NCRCS’s work reveals that researchers have
• Doctoral dissertations extended the work through studies conducted with
• Parental caregivers of children with special representative populations studied previously and
health care needs (Kelly, 2010) with new populations.
• Women who are treated for cancer and experi- Extensions of NCRCS populations are listed as follows:
enced fertility problems and/or premature • Multiple sclerosis—individuals and caregivers
menopause (Hunter, 2010) (Isaksson, Gunnarsson, & Ahlstrom, 2007; Isaks-
• Development of the Kendall Chronic Sorrow son & Ahlström, 2008; Liedstrom, Isaksson, &
Instrument to screen for and measure the expe- Ahlstrom, 2008)
rience of chronic sorrow (Kendall, 2005) • Neural tube defects—parental caregivers (Hobdell,
2004)
Graduate Research Education: Other • Bereavement—parents following stillbirth (Erland-
Disciplines sson, Saflund, Wredling, et al., 2011)
Graduate students in other professional disciplines, Extensions of NCRCS work to new populations are
including education, social work, psychology, educa- listed as follows:
tion, and family life have conducted dissertational Individuals:
studies using the NCRCS’s work. These unpublished • Who have human immunodeficiency virus (HIV)
studies, listed as follows according to topic, hold (Lichtenstein, Laska, & Clair, 2002; Ingram &
interdisciplinary relevance for nursing practice. Hutchinson, 1999)
• Individuals with the following: • Who are female victims of child abuse (Smith,
• Chronic back pain (Blair, 2010) 2007; 2009)
• Infertility (Casale, 2009) Family caregivers of children with the following:
• Bipolar disorder (Freedberg, 2011) • Asthma (Maltby, Kristjanson, & Coleman, 2003)
• Family caregivers of the following: • Diabetes (Bowes, Lowes, Warner, et al., 2009;
Young and adolescent children with: Lowes & Lyne, 2000)
• Multiple disabilities (Parrish, 2010); a signifi- • Disabilities (Mallow & Bechtel, 1999; Patrick-Ott
cant disability (Patrick-Ott & Ladd, 2010); & Ladd, 2010)
special health care needs (Kelly, 2010) • Epilepsy (Hobdell, Grant, Valencia, et al., 2007)
• Chronic mental illness (Davis, 2006) • HIV (Mawn, 2012)
• Autism (Collins, 2008; Monsson, 2010) • Sickle cell disease (Northington, 2000)

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

618 UNIT V Middle Range Nursing Theories


LIFE-SPAN
Chronic sorrow
Loss experience Pervasive
Ongoing Disparity Permanent
Single event Periodic
Potentially progressive
Trigger
events
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.
Because the theory was derived from empirical
Generality evidence, it has clear utility for further research. The
The concept of chronic sorrow began with the study clear definition of chronic sorrow allows the study of
of parents of children with a physical or cognitive individuals with a variety of losses and loss situations
defect. The NCRCS theorists, through empirical that commonly result in chronic sorrow. In their
evidence, expanded the theory to include a variety of study of bereaved individuals, Eakes and colleagues
loss experiences. The theory clearly applies to a (1999) identified symptoms of chronic sorrow in
wide range of losses and is applicable to the affected most subjects.
individual as well as to the caregivers and the be-
reaved. In addition, the theory is useful to a variety of Importance
health care practitioners. With these concepts, the As a consequence of the rich body of research
unique nature of the experience is captured with surrounding this theory, chronic sorrow is a widely
the broadness of the concepts such as triggers. The accepted phenomenon. This is evident by its inclusion
triggers and the management strategies are unique in NANDA-I diagnoses. Nurses and other health care
to the individual situation and thus allow application professionals found validity for their experiences with
to a wide variety of situations. 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
Eakes stated, “chronic sorrow is like the pregnancy her primary caregiver. Mrs. Jones complains of
experience, it is a normal process in which clients can difficulty sleeping and has frequent headaches.
benefit from guidance and support of health care profes- As the nurse, you suspect that Mrs. Jones may be
sionals” (G. Eakes, personal communication, May 2012). experiencing chronic sorrow.
Using the Burke/NCRCS Chronic Sorrow
Questionnaire (caregiver version) as an interview
Summary 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
her situation, and that it is normal to have these
feelings. In the course of the interview, you find
that Mrs. Jones has not sought professional coun-
CASE STUDY seling. Mrs. Jones tells you that she feels better
because this is the first time a health professional
Susan Jones is a 21-year-old woman who sustained has asked her about her feelings. With Mrs. Jones,
a spinal cord injury at 14 years of age as a result you begin to strategize on finding respite care and
of a diving accident. She is quadriplegic and a regular mental health counselor to assist her in
attends a local college. Her mother, Mary Jones, is
coping with chronic sorrow.




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

620 UNIT V Middle Range Nursing Theories

POINTS FOR FURTHER STUDY
n Eakes, G. G. (2013). Chronic sorrow. In S. J. sorrow assessment tool. Unpublished raw data
Peterson & T. S. Bredow (Eds.), Middle range ([email protected]).
theories: Application to nursing research (3rd ed., n Kendall, L. C. (2005). The experience of living with
pp. 96–107). Philadelphia: Lippincott. ongoing loss: Testing the Kendall Chronic Sorrow
n Eakes, G. G., & Burke, M. L. (2002). Development Instrument. (Doctoral Dissertation).
and validation of the Burke/Eakes chronic


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32

CHAP TER



















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).




for Young Painters in 1974. By this time, he had
Background and Credentials already become a psychiatric nurse. He continues
of the Theorist 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

CHAPTER 32 Phil Barker 627

After a gap of more than 30 years, Barker returned to (Barker dislikes the use of the term narrative, which
painting in 2006 and has become a successful, award- he prefers to call story). Barker has published in the
wining artist (see: www.mcloughlinart.com). 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
Barker’s early progress through nursing, although Distinguished Professors at the University of Tokyo in
unusual, was typical of the times and the context. 2000. In 2001, he received an Honorary Doctorate
Soon after qualifying in 1974, Barker began to study from Oxford Brookes University in England, and a
and practice various psychotherapies such as cogni- room was named in his honor at the Health Care
tive behavioral therapy, and family and group ther- Studies Faculty at Homerton College in Cambridge.
apy. His doctoral research, begun in 1980, featured Barker has held visiting professorships at interna-
cognitive behavioral work with a group of women tional universities in Australia (Sydney), Europe
living with depression (Barker, 1987). However, (Barcelona), and Japan (Tokyo). From 2002 to 2007,
around this time, Barker became uncomfortable with he was Visiting Professor at Trinity College in Dublin.
the application of therapies to people experiencing In 2006, he received the inaugural “Lifetime Achieve-
problems in living, and the “uncertainty principle” ment Award” from Blackwell journals, publishers of
resurfaced for him. His curiosity about life and per- the Journal of Psychiatric and Mental Health Nursing.
sons provoked questions about the resilience and In 2008, he shared with his wife Poppy Buchanan-
integrity of the people with whom he was working. Barker the Thomas Szasz Award for Contributions to
Instead of “caring for” or “treating,” them, he was Civil Liberties at New York University.
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
During his tenure as Professor of Psychiatric Nurs- passion for and curiosity about the recovery process
ing Practice at the University of Newcastle begun in and personhood.
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
As the UK’s first Professor of Psychiatric Nursing in private practice. He and Poppy Buchanan-Barker
Practice, Barker broke the conventional “academic” have further developed the recovery paradigm at Clan
mold by maintaining his involvement in practice. Unity, their international mental health recovery and
This involvement led directly to the development of reclamation consultancy in Scotland.
the Tidal Model. Throughout his nursing career,
Barker has wondered about the proper focus of psy-
chiatric nursing and the role of care, compassion, Theoretical Sources
understanding, and courage in helping people who The Tidal Model is focused on the fundamental care
are experiencing extreme distress, loss of self, or processes of nursing, is universally applicable, and is
spiritual crisis (Barker, 1999b). The Tidal Model was a practical guide for psychiatric and mental health
developed within this context and history. The “story nursing (Barker, 2001b). The theory is radical in its
knowledge” base lies at the heart of the Tidal Model. reconceptualization of mental health problems as

628 UNIT V Middle Range Nursing Theories

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

CHAPTER 32 Phil Barker 629

need to build, creatively, a means of reaching the per- living, merely pragmatic strategies for living with
son; crossing in the process, the murky waters of such problems. The influence of Denny Webster and
mental distress (Barker & Buchanan-Barker, 2004b). 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
Barker credits many thinkers with influencing his there are limits to what we can know, and Barker
work, beginning with Annie Altschul and Thomas invites nurses to cease the search for certainty, em-
Szasz. His view of mental health problems as problems bracing instead the reality of uncertainty. Know that
of living popularized by Szasz (1961, 2000) and later “change is constant,” one of the Ten Tidal Commit-
Podvoll (1990) is a perspective he prefers to diagnos- ments, identifies and celebrates change in people,
tic labeling and the biomedical construction of people circumstances, relationships, and organizations
and illness (Barker, 2001c, p. 215). He agrees with (Barker, 2003b; Buchanan-Barker & Barker, 2008).
Szasz that it is futile to try to “solve problems in This perspective also presents challenges in trying to
living.” Life is not a problem to be solved. Life is understand people, relationships, and situations. It
something to be lived, as intelligently, as competently, directs inquiry in qualitative, nonlinear ways, such as
as well as we can, day in and day out (Miller, 1983, action research, grounded theory, phenomenology,
p. 290). The challenge for nursing is to help persons and critical theory (Barker, 1999a).
live “intelligently” and “competently.” Annie Altschul, the Grande Dame of British psychi-
Travelbee’s (1969) concept of the Therapeutic Use atric nursing (Barker, 2003a, p. 12), along with Hilda
of Self flows through the Tidal Model and provides an (Hildegard) Peplau, was one of Barker’s mentors.
anchor for the “proper focus of nursing.” The follow- Altschul’s influence, especially her early appreciation of
ing three main theoretical frameworks underpin the system theory, is evident in the Tidal Model, as is her
Tidal Model: interest in understanding rather than explaining mental
1. Peplau’s (1952; 1969) Interpersonal Relations Theory distress and her belief that people need more straight-
2. Theory of Psychiatric and Mental Health Nursing forward help than many psychiatric theories suggest.
derived from the Need for Nursing studies Barker credits Peplau, the mother of psychiatric
3. Empowerment within interpersonal relationships nursing, with his becoming “an advocate for nursing
The pragmatic emphasis on strength-based, solu- as a therapeutic activity in its own right” (Barker,
tion-focused approaches acknowledges the important 2000a, p. 617). Peplau introduced her interpersonal
influence of Steve de Shazer’s solution-focused ther- paradigm for the study and practice of nursing in the
apy, although, as noted above, Barker does not believe early 1950s and defined nursing as “a significant,
that there can be any “solutions” for problems in therapeutic, interpersonal process” (Peplau, 1952,

630 UNIT V Middle Range Nursing Theories

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




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

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