Theory of chronic sorrow

Georgene gaskill eakes

Georgene Gaskill Eakes was born in New Bern, North Carolina. She received a Diploma in Nursing from Watts Hospital School of Nursing in Durham, North Carolina, in 1966, and in 1977 she graduated Summa Cum Laude from North Carolina Agricultural and Technical State University with a baccalaureate in nursing. Eakes completed a master’s in nursing at the University of North Carolina at Greensboro in 1980, and a doctor of education degree from North Carolina State University in 1988. Eakes was awarded a federal traineeship for her graduate study at the master’s level and a graduate fellowship from the North Carolina League for Nursing to support her doctoral studies. She was inducted into Sigma Theta Tau International Honor Society of Nurses in 1979 and Phi Kappa Phi Honor Society in 1988.

Early in her professional career, Eakes worked in both acute and community-based psychiatric and mental health settings. In 1980 she joined the faculty at East Carolina University School of Nursing, Greenville, North Carolina.

Eakes’ interest in issues related to death, dying, grief, and loss began in the 1970s, when she sustained life-threatening injuries in an automobile crash. Her near-death experience heightened her awareness of how ill prepared health care professionals and laypeople are to deal with individuals facing their mortality and the general lack of understanding of grief reactions experienced in response to loss situations. Motivated by this insight, she directed her early research efforts to the investigation of death anxiety among nursing personnel in long-term care settings and to the exploration of grief resolution among hospice nurses.

In 1983 Eakes established a twice-monthly community service support group for individuals diagnosed with cancer and their significant others, which she continues to cofacilitate. Her involvement with this group alerted her to the ongoing nature of grief reactions associated with diagnosis of potentially life-threatening chronic illnesses. While presenting her dissertation research at a Sigma Theta Tau International research conference in Taipei, Taiwan, in 1989, she attended a presentation on chronic sorrow by Mary Lermann Burke and immediately made the connection between Burke’s description of chronic sorrow in mothers of children with a myelomeningocele disability and grief reactions she had observed among cancer support group members.

After the conference, Eakes contacted Burke to explore the possibility of collaborative research endeavors. Subsequent to their discussions, they scheduled a meeting that included Burke and her colleague, Margaret A. Hainsworth, and Carolyn Lindgren, a colleague of Hainsworth. The Nursing Consortium for Research on Chronic Sorrow (NCRCS) was an outcome of this first meeting in the summer of 1989.

Subsequent to NCRCS’s establishment, members conducted numerous collaborative qualitative research studies on populations of individuals affected with chronic or life-threatening conditions, on family caregivers, and on bereaved individuals. Eakes focused her individual studies on those diagnosed with cancer, family caregivers of adult mentally ill children, and individuals who have experienced the death of a significant other. From 1992 to 1997, Eakes received three research grant awards from East Carolina University School of Nursing and two research grants from Beta Nu Chapter of Sigma Theta Tau International to support her research endeavors.

In addition to her professional publications, Eakes has conducted numerous presentations on issues related to grief-loss and death and dying to professionals and lay groups at local, state, national, and international levels. She has been heavily involved with the training of sudden infant death syndrome counselors for North Carolina and local and regional hospice volunteers. Eakes is active in efforts to improve the quality of care at the end of life and, toward that end, serves as a member of the Board of Directors of the End of Life Care Coalition of Eastern North Carolina.

In 2002 Eakes received the East Carolina University Scholar Teacher Award in recognition of excellence in the integration of research into teaching practices. In 1999 Eakes received the Best of Image award for theory publication presented by Sigma Theta Tau International Honor Society of Nursing for the publication, “Middle-Range Theory of Chronic Sorrow.” She was a finalist for the Oncology Nursing Forum Excellence in Writing Award in 1994. Other honors and awards include selection as North Carolina Nurse Educator of the Year by the North Carolina Nurses Association in 1991 and as Outstanding Researcher by Beta Nu Chapter of Sigma Theta Tau International Honor Society for Nurses in 1994 and 1998. Eakes has served as a reviewer for Qualitative Health Research, an international, interdisciplinary journal.

Eakes is Professor Emeritus, East Carolina University College of Nursing. Before her retirement she taught undergraduate courses in psychiatric and mental health nursing and nursing research, a master’s level course in nursing education, and an interdisciplinary graduate course titled “Perspectives on Death/Dying.” Currently, she is the Director of Clinical Education, Vidant Medical Center, in Greenville, North Carolina (G. Eakes, personal communication, 2012).

Mary lermann burke

Mary Lermann Burke was born in Sandusky, Ohio, where she grew up. She received a diploma in nursing from Good Samaritan Hospital School of Nursing in Cincinnati in 1962 and a postgraduate certification later that year from Children’s Medical Center in District of Columbia. After several years of work experience in pediatric nursing, Burke graduated Summa Cum Laude from Rhode Island College, Providence, with a bachelor’s degree in nursing. In 1982 she received her master’s degree in parent-child nursing from Boston University. During this program, she received a certificate in Parent-Child Nursing and Interdisciplinary Training in Developmental Disabilities from the Child Development Center of Rhode Island Hospital and the Section on Reproductive and Developmental Medicine, Brown University, in Providence. She received her doctorate of nursing science from Boston University in 1989.

Burke was inducted into Theta Chapter, Sigma Theta Tau, during her master’s program at Boston University in 1981 and Delta Upsilon Chapter of Sigma Theta Tau at Rhode Island College in 1988. She received a Doctoral Student Scholarship Award from the Theta Chapter in 1988. She received the 1996 Delta Upsilon Chapter Louisa A. White Award for Research Excellence.

In her early career, Burke practiced in the pediatric nursing specialty in both acute and primary settings. She joined the faculty of Rhode Island College Department of Nursing as a clinical instructor in 1980 and became a full-time instructor in 1982, assistant professor in 1987, associate professor in 1991, and professor in 1996. During this period, she taught pediatric nursing in both didactic and clinical courses. She also developed and taught a foundation nursing curriculum course encompassing nutrition, pharmacology, and pathophysiology. She retired from her Rhode Island College faculty position in December 2002.

Burke became interested in the concept of chronic sorrow during her master’s degree program while engaged in a clinical practicum at the Child Development Center of Rhode Island Hospital. Working with children with spina bifida and their parents, she developed the clinical hunch that the emotions displayed by the parents were consistent with chronic sorrow as first described by Olshansky (1962). Her master’s thesis, The Concerns of Mothers of Preschool Children With Myelomeningocele, identified emotions similar to chronic sorrow. She then developed the Burke Chronic Sorrow Questionnaire for her doctoral dissertation research, Chronic Sorrow in Mothers of School-Age Children With Myelomeningocele.

In June 1989, Burke presented her dissertation research at the Sigma Theta Tau International Research Congress in Taipei, Taiwan, where she interacted with Dr. Eakes of East Carolina University and Dr. Hainsworth of Rhode Island College. Subsequently, this group became the NCRCS, joined briefly by Dr. Carolyn Lindgren of Wayne State University. Together they developed a modified Burke/NCRCS Chronic Sorrow Questionnaire and conducted individually a series of studies that were analyzed collaboratively. Burke’s individual studies in this series focused on chronic sorrow in infertile couples, adult children of parents with chronic conditions, and bereaved parents. The collaboratively analyzed studies resulted in the development of a middle-range theory of chronic sorrow, published in 1998. Members of the Consortium, both individually and collaboratively, presented numerous papers on chronic sorrow at local, state, national, and international conferences and wrote 10 articles published in refereed journals, receiving the Best of Image Award in the Theory Category from Sigma Theta Tau International for their article, “Middle-Range Theory of Chronic Sorrow.” More recently, Burke collaborated with Dr. Eakes in the development of the Burke/Eakes Chronic Sorrow Assessment Tool.

Burke is active in numerous professional and community organizations. She is a member of the St. Joseph’s Health Services of Rhode Island Board of Trustees. She was awarded the Outstanding Alumna Award for Contributions in Nursing Education by Rhode Island College Department of Nursing and the Rhode Island College Alumni Honor Roll Award (L. Burke, personal communication, 2005).

Margaret A. Hainsworth

Margaret A. Hainsworth was born in Brockville, Ontario, Canada, and grew up in Prescott, Ontario. She entered the diploma school of nursing at the Brockville General Hospital, Brockville, Ontario, graduating in 1953. In 1959 she immigrated to the United States to attend George Peabody College for Teachers in Nashville, Tennessee, receiving a diploma in public health nursing. In 1974 she continued her education at Salve Regina College, Newport, Rhode Island, and received a baccalaureate degree in nursing in 1973 and a master’s degree in psychiatric and mental health nursing from Boston College in 1974. She received a doctoral degree in education administration from the University of Connecticut in 1986. In 1988 she was board certified as a clinical specialist in psychiatric and mental health nursing.

She was inducted into Sigma Theta Tau, Alpha Chi Chapter in 1978 and Delta Upsilon Chapter in 1989. In 1976 she was awarded an outstanding faculty award at Rhode Island College. In 1992 she was selected to attend the Technical Assistance Workshop and Mentorship for Nurses in Implementation of the National Plan for Research in Child and Adolescent Mental Disorders that was sponsored by the National Institutes of Health. In 1991 she was selected to review manuscripts for the Qualitative Health Research journal. In 1999 Hainsworth was accepted at the Royal Melbourne Institute of Technology in Melbourne, Australia, as a visiting fellow on a faculty exchange program.

Her practice in nursing was in the specialties of public health and psychiatric and mental health nursing. In 1974 she was accepted as a lecturer in the Department of Nursing at Rhode Island College and was promoted to full professor in 1992. Her major area of teaching was psychiatric care that consisted of both classroom lectures and clinical practice. She taught a course titled “Death and Dying” that became an elective in the college’s general studies program. Hainsworth always maintained her practice and was employed for 13 years as a consultant at the Visiting Nursing Association. She entered into a private practice at Bay Counseling Association in 1993 and maintained this practice for 5 years.

Building on the work of Burke and Eakes, the NCRCS was established in 1989 to expand the understanding of chronic sorrow. Hainsworth was one of the four cofounders and remained an active member until 1996. The research began with four studies that focused on chronic sorrow in individuals in chronic life situations, and the members of the consortium analyzed data collaboratively. During the 7 years that she was a member, the consortium published 13 manuscripts and presented the findings from their studies at international, state, and regional conferences. In 1999 they were awarded the Best of Image Award in Theory from Sigma Theta Tau International (M. Hainsworth, personal communication, 2005).

Chronic sorrow

The empirical evidence supporting NCRCS’s initial conceptual definition of chronic sorrow was derived from interviews with mothers of children with spina bifida, which Burke (1989) conducted as part of her dissertation research. Through this work, Burke was able to define chronic sorrow as a pervasive sadness and found that the experience was permanent, periodic, and potentially progressive (Eakes et al., 1993). Burke’s initial work provided the foundation for subsequent series of studies, including the basis for interview guides used in these studies.

These NCRCS studies involved the following:

Based on these studies, the theorists postulated that chronic sorrow occurs in any situation in which the loss is unresolved. These studies did not demonstrate consistently that the associated emotions worsened over time. However, the theorists concluded that the studies did support the “potential for progressivity and intensification of chronic sorrow over time” (Eakes et al., 1998, p. 180).

The NCRCS theorists extended their studies to individuals experiencing a single loss (bereaved). They found that this population experienced these same feelings of chronic sorrow (Eakes, Burke, & Hainsworth, 1999).

Based on this extensive empirical evidence, the NCRCS theorists refined the definition of chronic sorrow as the “periodic recurrence of permanent, pervasive sadness or other grief-related feelings associated with ongoing disparity resulting from a loss experience” (Eakes et al., 1998, p. 180).

Triggers

Using the empirical data from the series of studies, the NCRCS theorists identified primary events or situations that precipitated the reexperience of initial grief feelings. These events were labeled chronic sorrow triggers (Eakes et al., 1993). The NCRCS compared and contrasted the triggers of chronic sorrow in individuals with chronic conditions, family caregivers, and bereaved persons (Burke, Eakes, & Hainsworth, 1999). For all populations, comparisons with norms and anniversaries were found to trigger chronic sorrow. Both family caregivers and persons with chronic conditions experienced triggering with management crises. One trigger unique for family caregivers was the requirement of unending caregiving. The bereaved population reported that memories and role change were unique triggers.

Management strategies

The NCRCS posited that chronic sorrow is not debilitating when individuals effectively manage feelings. The management strategies were categorized as internal or external. Self-care management strategies were designated as internal coping strategies. The NCRCS further designated internal coping strategies as action, cognitive, interpersonal, and emotional.

Action coping mechanisms were used across all subjects—individuals with chronic conditions and their caregivers (Eakes, 1993, 1995; Eakes et al., 1993, 1999; Hainsworth, 1994, 1995; Hainsworth et al., 1995; Lindgren, 1996). The examples provided are similar to distraction methods commonly used to cope with pain. For instance, “keeping busy” and “doing something fun” are given as examples of action-oriented coping (Eakes, 1995; Lindgren et al., 1992). The NCRCS theorists found that cognitive coping was common, and examples included “thinking positively,” “making the most of it,” and “not trying to fight it” (Eakes, 1995; Hainsworth, 1994; Lindgren, 1996). Interpersonal coping examples included “going to a psychiatrist,” “joined a support group,” and “talking to others” (Eakes et al., 1993; Hainsworth, 1994, 1995). Emotional strategy examples included “having a good cry” and expressing emotions (Eakes et al., 1998; Hainsworth et al., 1995). A management strategy was labeled effective when a subject described it as helpful in decreasing feelings of regrief.

External management was described initially by Burke as interventions provided by health professionals (Eakes et al., 1998). Health care professionals assist affected populations to increase their comfort through roles of empathetic presence, teacher-expert, and caring and competent professional (Eakes, 1993, 1995; Eakes et al., 1993, 1999; Hainsworth, 1994, 1995; Hainsworth et al., 1995; Lindgren, 1996).

Nursing

Diagnosing chronic sorrow and providing interventions are within the scope of nursing practice. Nurses can provide anticipatory guidance to individuals at risk. The primary roles of nurses include empathetic presence, teacher-expert, and caring and competent caregiver (Eakes et al., 1998).

Person

Humans have an idealized perception of life processes and health. People compare their experiences both with the ideal and with others around them. Although each person’s experience with loss is unique, there are common and predictable features of the loss experience (Eakes et al., 1998).

Health

There is a normality of functioning. A person’s health is dependent on adaptation to disparities associated with loss. Effective coping results in a normal response to life losses (Eakes et al., 1998).

Environment

Interactions occur within a social context, which includes family, social, work, and health care environments. Individuals respond to their assessment of themselves in relation to social norms (Eakes et al., 1998).

Practice

Education

The use of the NCRCS’s work in undergraduate, graduate research, and continuing education lends support for its acceptance by the educational community.

Research

A review of published research that has used the NCRCS’s work revealed that researchers have extended the work through studies conducted with representatives of populations studied previously and with new populations from international researchers.

Although most of the authors were from the United States, the literature reflects an international influence, with publications by nurses from Australia (Maltby et al., 2003; Whittingham et al., 2013), New Zealand (Mercer, 2015), Iran (Nikfarid et al., 2015), Sweden (Ahlström, 2007; Isaksson & Ahlström, 2008; Pejlert, 2001), Uganda (Olwit et al., 2015), and the United Kingdom (Bowes et al., 2009; Lowes & Lyne, 2000). Several studies were written by occupational therapists, two by psychologists and one by sociologists, supporting the assertion that the NCRCS work is the basis for international and interdisciplinary research. Application of this middle-range theory to research is seen in current nursing literature (Eakes, 2013).

Clarity

This theory clearly describes a phenomenon that is observed in the clinical area when loss occurs, and it is certainly evident that it is accepted in nursing practice. As indicated previously, a nursing diagnosis of chronic sorrow is included in the standardized languages of NANDA-I and is defined as cyclical, recurrent, and potentially progressive and, as such, is consistent with the definition of the NCRSC theorists. In each of the published works of these theorists, key concepts are defined, and this middle-range theory describes the proposed relationship between these concepts. The relationship between concepts makes intuitive sense. For example, it is clear that effective management, whether internal or external, will lead to increased comfort, and, conversely, ineffective management will lead to increased discomfort and intensity of chronic sorrow. As a middle-range theory, the scope is limited to explanation of a single phenomenon, that of response to loss, and is congruent with clinical practice experience. As Eakes has stated, the beauty of this middle-range theory is that it rings true with practitioners, students, and educators, as is evident from the continued communication nationally and internationally (G. Eakes, personal communication, May 2012).

One unclear aspect of the theory is an explanation for why not all individuals with unresolved losses experience chronic sorrow. Some, albeit few, of the NCRCS’s interviewees did not experience the symptoms labeled as chronic sorrow. No further data have been provided about these individuals. Do individuals who do not experience chronic sorrow have different personality characteristics, such as resiliency, or receive different health care interventions at the time of the loss? What would the data from these individuals suggest about coping with ongoing loss?

Another concept that needs clarification is the progression of chronic sorrow. Although chronic sorrow is described as potentially progressive, what is the progression, and is this progression pathological in nature?

Clarification of the categories of internal management strategies is warranted. It is unclear to these reviewers how problem-oriented and cognitive strategies are different. Likewise, the emotive-cognitive, emotional, and interpersonal strategies are not clearly described. There is some obvious overlap between external versus internal management when the word interpersonal is used to describe seeking professional help.

Simplicity

Generality

The concept of chronic sorrow began with the study of parents of children with a physical or cognitive defect. The NCRCS theorists, through their generated empirical evidence, expanded the theory to include a variety of loss experiences. The theory clearly applies to a wide range of losses and is applicable to the affected individual as well as to the caregivers and the bereaved. In addition, the theory is useful to a variety of health care practitioners. With these concepts, the unique nature of the experience is captured with the broadness of the concepts such as triggers. The triggers and the management strategies are unique to the individual situation and thus allow the application to a wide variety of situations.