TitlePerceived illness burden, a key to understanding advance care planning in adults nearing the end of life
NameBodnar-Deren, Susan (author), Carr, Deborah S. (chair), Idler, Ellen (internal member), Horwitz, Allan (internal member), Leventhal, Howard (outside member), Saraiya, Biren (outside member), Rutgers University, Graduate School - New Brunswick,
Advance directives (Medical care),
DescriptionDespite nationwide legislation encouraging advance care planning (ACP), rates of completion are low. A substantial body of work has examined ACP and the use of advance directives; studies have identified the benefits of ACP, the efficacy of ACP, the low rates of and barriers to ACP, the types of treatments patients are willing to accept, and characteristics of those who engage in planning. However, ACP is still underutilized and not fully understood. Questions remain about how to increase rates of ACP and what factors influence those who have (or have not) engaged in the ACP process. To answer these questions, recent analyses of ACP have called for researchers, policymakers, and practitioners to examine ACP as a health behavior, using a biopsychosocial approach based on patient perspectives that motivate such behavior. The Common Sense Model of Self-Regulation (CSM) is a widely used health behavior model asserting that an individual’s health preferences and behaviors are not only affected by their actual condition, but also by their perceptions about their health condition. The likelihood that an individual prepares for end of life through ACP may reflect their illness representations or beliefs about the duration, severity, consequence and controllability of their health condition. Health representations may trigger a health behavior which, in this case, is ACP. Therefore, the CSM may be useful in helping to explain why individuals engage in ACP. Using data from the New Jersey End-of-Life (NJEOL) study (N=293) (2006-2008), an ethnically diverse sample of non-institutionalized older adults (≥ age 55), I explore the extent to which patient perspectives or illness representations motivated them to plan for the end of life. I focus on the consequences of illnesses and compromised health at the end of life, specifically perceived illness burden. I examine if, how, and for whom perceived burden motivates patients to engage in the process of advance care planning. The findings have significant implications for health care practice and policy. These findings suggest that functional impairments and perceptions of burden are important factors in ACP; eliciting patient perceptions about the consequences of their illness may facilitate increased levels of ACP.
NoteIncludes bibliographical references
Noteby Susan Bodnar Deren
CollectionGraduate School - New Brunswick Electronic Theses and Dissertations
Organization NameRutgers, The State University of New Jersey
RightsThe author owns the copyright to this work.