Bereaved Family Caregiver’s Descriptions of Sleep Changes During and After Caregiving

Patricia Carter, PhD, University of Texas at Austin School of Nursing
Corinne Grimes, PhD, University of Texas at Austin School of Nursing
Martita Lopez, PhD, University of Texas at Austin, College of Liberal Arts, Department of Psychology

Purpose: Thousands of persons with chronic conditions die each day. Many of the fortunate ones have a family member (caregiver) at their side at the time of death. Caregiver studies have shown that family caregivers experience severe levels of stress during the caregiving process and that this stress can negatively impact caregiver emotional and physical well being (Given, Given, & Kozachik, 2001; Carter & Chang, 2000, Carter, 2001, Carter 2002). The studies that have explored caregiver bereavement, typically focused on emotional symptoms (e.g. depression and anxiety) and the impact on the bereavement process (Kelly, et al, 1999; Kissane, McKenzie, & Bloch, 1997; Schulz, et.al, 2001; Wyatt, Friedman, Given, & Given, 1999). A few studies have begun to report the physiological aspects of bereavement (e.g., sleep changes) and have generated the question “how do these variables impact the bereavement process” (Lavie, 1996; Reynolds, et al, 1993; Steeves, 2002). Negative changes in sleep patterns seen during caregiving may persist after the death of the patient, or they may intensify, or they may diminish, this is unknown. What is known, is that poor sleep quality increases levels of depressive symptoms, anxiety, and decreases immune function and glucose metabolism in healthy adults (Kiley, 1999; Riedel & Lichstein, 2000; Scheen, Byrne, Plat, Leproult, & Van Cauter, 1996; Scheen & Van Cauter, 1998; Spiegel, et al, 1999). Further information is needed about how sleep quality changes from caregiving through bereavement and how these changes influence the caregiver’s quality of life, daily functioning, physiologic health, and the process of bereavement. In order to begin to understand this complex process it is necessary to interview caregivers who are having these experiences. It is only through their eyes that we can see how the road of bereavement is traveled and how sleep quality can impact the smoothness of that road.

Research Aims: 1) To explore how bereaved family caregivers describe their sleep during caregiving.
2) To explore how bereaved family caregivers describe their sleep after the death of the patient.
3) To explore how bereaved family caregivers describe the impact of sleep quality on their daily functioning, quality of life, physical health, and bereavement process. Data from this study will be used to develop a grant application to be submitted to the National Institutes of Health to conduct a longitudinal study of bereaved caregiver sleep pattern changes and the impact on quality of life, depressive symptoms, progress through the bereavement process, and physiological health (immune function).

Methods: This descriptive study will explore changes in caregiver sleep quality during caregiving and after the death of a family member. Family caregivers will be asked to describe their caregiving experiences, changes in their sleep during caregiving and how there sleep has changed since the death of their family member. Caregivers will also be asked to describe how their sleep quality has influenced their daily functioning, quality of life, physical health, and bereavement process. The methods are primarily qualitative, however, quantitative measures of sleep quality (Pittsburgh Sleep Quality Index) and depressive symptoms (CES-D) will we assessed with each caregiver.