Individuals with life-limiting illness experience complex needs from physical care to coping with existential issues of role and meaning. Living in liminality between hope for cure and recognition of mortality, patients with advanced illness balance tasks of survivorship and life completion. The health care system, itself divided along these same axes, offers little guidance to those struggling to integrate these tasks. Patients may be left on their own to deal with such concerns, leading to increased distress and worse outcomes. Self-management is an empowering approach to chronic illness care that has gained popularity for diseases such as diabetes and hypertension. It offers patients partnership with their providers, has improved clinically significant outcomes, and may be cost effective. Yet few studies have explored self-management in advanced illness. This Program Project grant proposes to explore how this concept can improve the lives of patients with life-limiting illness and their caregivers. In three studies, we will test interventions that focus on the medical, emotional and role components of self management. The first study, Enhanced Self-Efficacy Training for Informal Cancer Care," exploits a teachable moment to train caregivers in home symptom management. The second study, "Uncertainty Management Intervention for Patients Waiting for a Liver Transplant" helps these patients cope emotionally with the stress of uncertainty. The final study, "OUTLOOK: An Intervention to Improve Quality of Life in Serious Illness" tests an approach that encourages seriously ill patients to consider role issues of preparation and life completion. We will create synergy among all three studies through a Data Collection, Management and Qualitative Analysis Core that will integrate management of all study data and conduct two qualitative research projects that address cross-cutting questions. The first will interview a cohort of bereaved caregivers from our NINR funded Pathways study to learn more about the challenges of living with life-limiting illness and to identify when in the course of their loved one's illness self-management interventions would have been welcome. The second will interview subjects from each of the studies to learn their response to receiving self-management interventions. Through all of these approaches, we hope to learn when and how to intervene and to further develop the theory of self-management in life-limiting illness.
|Bailey Jr, Donald E; Steinhauser, Karen; Hendrix, Cristina et al. (2011) Pairing Self-Management with Palliative Care: Intervening in Life-Limiting Illness. J Nurs Healthc Chronic Illn 3:1-3|