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An evidence-based approach for supporting parents experiencing chronic sorrow.

Article Excerpt
Nearly 9.4 million children in the United States under 18 years of age are estimated to have a physical, developmental, behavioral, or emotional chronic condition requiring special health care services (U.S. Department of Health and Human Services [DHHS], Health Resources and Services Administration, Maternal and Child Health Bureau, 2004). Due to the complex nature of some chronic conditions, parents may be vulnerable to numerous stressors. These can be related to the amplified amount of time necessary for providing care, the need to coordinate or make arrangements for their child's care on a day-to-day basis, and the financial responsibility related to increased medical expenses, equipment, medications, home care, and outpatient therapies required for the ongoing health care needs of their child. Families can spend more than 11 hours per week providing, coordinating, or arranging care for children whose abilities are limited by their conditions (DHHS, Health Resources and Services Administration, Maternal and Child Health Bureau, 2004). Such commitments may require parents to take time off from work or even resign completely to free up enough time to meet their child's needs, thus increasing the financial burden.

Parental stressors may vary over time, but they have the potential to significantly impact family functioning. This is most true during times of diagnosis, illness exacerbations, and developmental transitions (Melnyk, Feinstein, Moldenhouer, & Small, 2001). Under these circumstances, it is common for parents to be reminded of the loss associated with the "perfect child" they once dreamed of or to experience an increased fear that their child may not be able to live the quality of life they once anticipated. For these reasons, some parents may feel periodic episodes of sadness while coping with child-rearing tasks associated with caring for a child with special health care needs. These episodes of periodic sadness are usually signs of parents grieving a living loss, an experience otherwise known as chronic sorrow.

This article will assist nursing professionals in (1) recognizing that chronic sorrow is a normal grief response associated with a living loss, (2) appropriately assessing chronic sorrow in parents of chronically ill children, and (3) being able to support parents experiencing chronic sorrow by applying evidence-based strategies to facilitate effective coping.

What Is Chronic Sorrow?

Olshansky (1962), a counselor to parents of handicapped children, first introduced the term "chronic sorrow" in the early 1960s when he described the normal pervasive psychological response in the suffering of parents dealing with mentally disabled children. He observed that parents of children with mental retardation may suffer from chronic sorrow throughout their lives as a reaction to both the loss of the expectations they had for the perfect child and the day-by-day reminders of dependency. He also encouraged professionals to recognize chronic sorrow as a natural response to a tragic situation in order to assist parents in achieving greater comfort living with and managing a child with a mental disability.

In the late 1980s and early 1990s, the nursing profession first introduced Olshansky's theory through Teel's concept analysis of chronic sorrow (Teel, 1991). In her analysis, Teel examined theories of time-bound grief and of chronic grief or mourning, and used these in adapting Olshansky's definition of chronic sorrow for nurses. Time-bound grief theories are linear in nature with a final goal of acceptance and adaptation. Prolonged chronic grief or mourning results when adaptation is not made; it is considered an abnormal response. These models of grief contrasted with Olshansky's theory, which described chronic sorrow as ongoing yet periodic, as well as normal. Teel (1991) then defined chronic sorrow as "a pervasive psychic pain and sadness, stimulated by certain trigger events, which follows loss of a relationship of attachment" (p. 1316). Teel (1991) also described chronic sorrow as being precipitated by a permanent loss of a personal attachment that may be ongoing with a sadness of varied intensity that recurs for the lifetime of the disabled person.

Research Identifying Chronic Sorrow

The majority of the research on chronic sorrow focuses on parents coping with children who live with mental retardation or a physical disability. However, chronic sorrow may also be experienced by parents of children with...

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