Carolyn L. Lindgren’s research while affiliated with Wayne State University and other places

Multiple sclerosis, one of the most common chronic disabilities among young adults, may potentiate the occurrence of chronic sorrow. Chronic sorrow differs from acute grief because it is permanent, periodic, and progressive in nature; it may be a normal component of chronic illness and disability. This study describes one woman's experience with multiple sclerosis, her chronic sorrow about the trajectory of her disability, her progressive loss of bodily function, and the stigma of chronic illness. It also reports some of the feelings experienced by her husband, the primary caregiver.

Multiple sclerosis, one of the most common chronic disabilities among young adults, may potentiate the occurrence of chronic sorrow. Chronic sorrow differs from acute grief because it is permanent, periodic, and progressive in nature; it may be a normal component of chronic illness and disability. This study describes one woman's experience with multiple sclerosis, her chronic sorrow about the trajectory of her disability, her progressive loss of bodily function, and the stigma of chronic illness. It also reports some of the feelings experienced by her husband, the primary caregiver.

Research on the phenomenon of chronic sorrow has been limited to samples of parents of children with disabilities. The Nursing Consortium for Research on Chronic Sorrow was formed to study this concept in individuals with chronic illness and their family caregivers across the life span. Although no research on this concept has focused on a life-span approach, the level and quantity of related research indicate that a qualitative method is most appropriate. A study of parents of children with spina bifida provided a usable instrument, the Chronic Sorrow Questionnaire. The purpose of additional study is to determine when chronic sorrow occurs and what characteristics it displays in a variety of populations across the life span, how groups suffering from chronic sorrow compare with parents of children with disabilities, whether chronic sorrow is an inherent phenomenon in chronic illness situations, and how the major subconcepts of chronic sorrow theory are linked.

Losses are an integral part of chronic illness and disability. The term chronic sorrow, has been used to describe the long-term periodic sadness the chronically ill and their caregivers experience in reaction to continual losses. In this conceptual analysis of chronic sorrow, identified critical attributes are: cyclic sadness over time in a situation with no predictable end; external and internal stimuli triggering the feelings of loss, disappointment, and fear; and, progression and intensification of the sadness or sorrow years after the initial disappointment or loss. Model, borderline, related, contrary, and illegitimate cases illustrate what the concept is and what it is not. The meaning of chronic sorrow is compared to the meaning of unresolvable grief and depression. Chronic sorrow in various stages of life is illustrated in descriptions of: the situation and feelings of parents of handicapped children; multiple sclerosis patients in the middle, productive years; and elderly caregivers of spouses with dementia. Implications for research include the need to study the concept in various populations to determine its prevalence and operation. Through research, the meaning of the concept can be further clarified. This is a beginning step toward developing nursing theory that will give direction for providing care to persons encountering sadness over long periods of time.

With the increased emphasis on the generation of nursing knowledge through research, collaboration has been identified as an effective way of maximizing both personal and financial resources. There are few articles that specifically describe the process for initiating such a collaborative effort, especially when interested persons are far removed, geographically, from one another. This paper outlines the steps involved in establishing a research consortium and chronicles the development of the Nursing Consortium for Research on Chronic Sorrow. Lancaster's (1985) criteria for effective research collaboration are used to evaluate this developmental process.