14 research outputs found
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Unpacking the Meaning and Impact of the Components of End-of-life Preparation Among Cancer Patients
Cancer is the second leading cause of death in the United States, accounting for nearly a quarter of all deaths annually. Cancer patients and their caregivers do not adequately prepare for the end-of-life, creating the conditions for poorer quality deaths. To address this lack of preparation, this dissertation aimed to unpack the meaning and impact of the components of preparation for the end-of-life among cancer patients. Three independent studies were conducted to achieve this aim: 1) a concept analysis to clarify the meaning of end-of-life decision making in the context of chronic life-limiting disease, distinguishing it from preparation for the end-of-life, 2) a quantitative analysis of data from the Health and Retirement Study, which utilized structural equation modeling to examine the impact of classes of advance care planning (ACP) completion on the quality of death among cancer patients, and 3) a systematic review of ACP interventions to identify ways to enhance ACP engagement among cancer patients. Findings from the concept analysis led to a refined definition and conceptual model of end-of-life decision making in the context of life-limiting disease, where decision making is preceded by distinct preparatory factors and followed by distinct outcomes (i.e., quality of death, quality of caregiver bereavement). While ACP was a possible preparatory factor in the model, the model also demonstrated that there were other unique features of preparation, which cannot be reduced to ACP alone. The model highlights that the main power health care providers have to influence end-of-life decisions and their associated outcomes is during this preparatory phase. The secondary data analysis revealed that when compared to non-engagement in ACP, all classes of ACP completion were found to positively impact the quality of death among cancer patients. Yet, more full engagement in ACP was found to have greater effects on the quality of death than partial engagement. Potential enhanced approaches to ACP that were identified in the systematic review which may address this partial and non-engagement included utilizing an interdisciplinary group of health care providers to implement ACP, formally involving the caregiver in the process of ACP, and addressing ACP over multiple clinical interactions staged over time. This dissertation draws the attention of researchers and health care providers to the larger context of preparation for the end-of-life as a crucial mechanism that can be harnessed to improve end-of-life care. To do so, will require the development of a measure for preparation for the end-of-life that accounts for health care provider as well as caregiver engagement in this process. This will help to achieve a richer understanding of the quantity and dose of preparation needed to optimize outcomes at the end-of-life. Nurses are well positioned to advance the science related to preparation for the end-of-life through research and translation of evidence into practice. Such efforts stand to significantly improve the end-of-life experience for both cancer patients and their caregivers.</p
A Systematic Review of Advance Care Planning Interventions for Clients with Cancer Using the Transtheoretical Model of Behavior Change (S721)
The Impact of Levels of Advance Care Planning Engagement on Bereaved Caregivers’ Perceptions of Cancer Decedents’ End-of-life Experiences (GP759)
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A Systematic Review and Gap Analysis of Advance Care Planning Intervention Components and Outcomes Among Cancer Patients Using the Transtheoretical Model of Health Behavior Change
Despite the benefits of advance care planning (ACP), cancer patients rarely engage in ACP. ACP is a process that parallels health behavior change. This makes the Transtheoretical Model of Health Behavior Change (TTM) an important framework for understanding how to increase ACP among cancer patients.
This study aimed to systematically review ACP interventions for cancer patients by 1) categorizing ACP intervention components according to the stages and processes of behavior change in the TTM, 2) conducting a gap analysis among the categorized components, and 3) identifying patterns between the categorized intervention components and the intervention outcomes.
PubMed, CINAHL Plus, MEDLINE, Cochrane Library, and Web of Science databases were searched for articles related to ACP and cancer. ACP intervention components were abstracted, assessed for theoretical relevance, organized according to the stages and process of change in the TTM, and then synthesized.
The search produced 4604 articles, with 25 meeting criteria for review. Most intervention components targeted the precontemplation and contemplation stages of change, with fewer targeting preparation, action, or maintenance. Multiple processes of change were not addressed. Interventions that resulted in ACP engagement tended to take an interdisciplinary approach to implementation and consisted of multiple consultations staged over time.
ACP likely requires “high touch” interventions to induce behavior change. ACP interventions that are stage-matched, use diverse mechanisms to engage ACP (i.e., processes of change), address ACP as a process, and monitor engagement across the illness trajectory are needed for cancers patients and their caregivers
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The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer
Context: Advance care planning (ACP) is used to prepare patients and caregivers for future “in the moment” decisions at the end-of-life. Patients with cancer generally do not engage in all 3 components of ACP (documented living will, health-care surrogate, end-of-life discussions); however, little is known about the impact of these varying levels of ACP engagement on caregivers postdeath. Objective: To examine the relationship between varying levels of ACP engagement and caregivers’ perceptions of cancer decedents’ end-of-life experiences. Methods: A secondary analysis of the 2002 to 2014 waves of the Health and Retirement Study data using structural equation modeling was conducted. Five levels of ACP engagement were defined: full (discussions/documents), augmented discussions, documents only, discussions only, and no engagement. Results: Among the 2172 cancer death cases, the analyzed sample included 983 cases where end-of-life decisions occurred. Compared to no ACP, all levels of ACP were significantly associated with caregivers’ positive perceptions of cancer decedents’ end-of-life experiences ( P ≤ .001), controlling for sex, race, and Hispanic ethnicity ( R 2 = .21). However, the relative impact of each level of ACP engagement was not equal; full engagement (β = .61) was associated with a greater impact compared to each of the partial levels of engagement (augmented discussions [β = .33], documents only [β = .17], discussions only [β = .17]). Conclusion: Partial ACP engagement, not just nonengagement, serves as an important clinically modifiable target to improve the end-of-life care experience among patients with cancer and the perceptions of those experiences among bereaved caregivers
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Evaluation of a Novel Disaster Nursing Education Method
A common method of disaster training is needed to improve disaster nursing education and facilitate better communication among interprofessional disaster responders. To inform the development of disaster nursing curricula, a novel disaster nursing education method consistent with Homeland Security Exercise and Evaluation Program (HSEEP) and the International Council of Nurses (ICN) framework was developed to improve disaster nursing competencies in a baccalaureate nursing program.
In total, 89 undergraduate nursing students participated. Perceived disaster nursing knowledge, confidence, and training/response were assessed with 14 items before and after the education.
Exploratory factor analysis showed 3 factors, knowledge, confidence, and training/response, explained 71% of variation in items. Nursing students showed large improvements in perceived disaster nursing knowledge (t=11.95, P<0.001, Cohen's d=1.76), moderate increases in perceived confidence (t=4.54, P<0.001, d=0.67), and no change in disaster training and response (t=0.94, P=0.351, d=0.13).
Results show preliminary evidence supporting the effectiveness of disaster nursing education informed by HSEEP. This training has the potential to fill current practice gaps in disaster nursing knowledge and build confidence to use those skills in practice. (Disaster Med Public Health Preparedness. 2018;12:703-710)
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End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model
Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvements in clinical practice and research. Walker and Avant’s method for concept analysis was used to investigate uses of “end-of-life decision making” in the literature in order to identify its components (antecedents, attributes, consequences), describe stakeholder roles (patients, family/caregivers, health care providers), and develop a conceptual model. An iterative search strategy resulted in 143 included sources. These encompassed 1,127,095 patients (primarily older adults), 3,384 family/caregivers, and 588 healthcare providers. Evidence revealed that end-of-life decision making is a process, not a discrete event. This begins with preparation (antecedents), which involves the designation of a decision maker and iterative patient, family/caregiver, and healthcare provider communication across the chronic illness. These preparatory processes inform end-of-life decisions, which possess three attributes: 1) serial choices in the terminal illness phase that are 2) weighed in terms of their potential outcomes 3) through patient and family/caregiver collaboration. The components impact patients’ death experiences, caregivers’ bereavement, and healthcare systems (outcomes). The resulting conceptual model highlights the larger context of preparation (beyond advance care planning) and the prominent role of caregivers in the end-of-life decision making process. Enhanced measurement must account for the dose, content, and quality of the preparation and decision components that collectively contribute to outcomes, which holds implications for practice improvements and research
“I’m Dealing With That”: Illness Concerns of African American and White Cancer Patients While Undergoing Active Cancer Treatments
Background: National oncology guidelines recommend early integration of palliative care for patients with cancer. However, drivers for this integration remain understudied. Understanding illness concerns at the time of cancer treatment may help facilitate integration earlier in the cancer illness trajectory. Objective: To describe cancer patients’ concerns while undergoing cancer treatment, and determine if concerns differ among African Americans and Whites. Methods: A 1-time, semi-structured qualitative interview was conducted with a purposive subsample of cancer patients participating in a larger study of illness concerns. Eligible patients were undergoing cancer treatments and had self-reported moderate-to-severe pain in the last week. Analysis encompassed a qualitative descriptive approach with inductive thematic analysis. Results: Participants (16 African American, 16 White) had a median age of 53 and were predominantly females (72%) with stage III/IV cancer (53%). Illness concerns were largely consistent across participants and converged on 3 themes: symptom experience (pain, options to manage pain), cancer care delivery (communication, care coordination and care transitions), and practical concerns (access to community and health system resources, financial toxicity). Conclusions: The findings extend the scope of factors that could be utilized to integrate palliative care earlier in the cancer illness trajectory, moving beyond the symptoms- and prognosis-based triggers that typify current referrals to also consider diverse logistical concerns. Using this larger set of concerns aids anticipatory risk mitigation and planning (e.g. care transitions, financial toxicity), helps patients receive a larger complement of support services, and builds cancer patients’ capacity toward a more patient-centered treatment and care experience