Browsing by Author "Bailey, Donald E"
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Item Open Access Family Perspectives of Nursing Strategies to Facilitate Transition from Curative to Palliative Care in the Intensive Care Unit(2013) Adams, Judith AnnProblem: Family members of patients dying in the ICU are faced with agonizing dilemmas, the consequences of which might haunt them for a lifetime. Providing these family members with meaningful support and information is imperative. Nurses, by virtue of the time spent at the bedside and knowledge of patient and family needs, are in a unique position to support family members. The literature provides ample studies of how nurses perceive they are involved in EOL decision-making and several studies describing what family members perceive that they need from health care professionals in general. What is lacking is literature that describes the family members' perceptions of the specific strategies that nurses use to support their decision-making and how family members respond to these strategies. Because nurses might act on instinct, the strategies they use might or might not be helpful to family members. This study builds on prior work by exploring in greater depth the involvement of nurses in EOL decision-making, the specific strategies that family members perceive nurses using, and how family members respond to these strategies. This study aims to explore how family members respond to nursing strategies to support EOL decision-making, including family members perceptions of the strategies nurses use, how these strategies change over the trajectory of decision-making, and how these strategies affect their ability to make decisions consistent with the goals of the patient and their ability to cope with the stress of making EOL decisions.
Methods: Chapter two describes a systematic review of the literature that was conducted to define areas where research is needed. Chapter three describes a pilot case study that was conducted to determine the feasibility of conducting a prospective longitudinal study of family members making EOL decisions for their loved one in an ICU. Chapter four describes a prospective, longitudinal, qualitative descriptive study. In this study, the PI identified ICU patients who were likely to need complex decision-making and used narrative style interviewing techniques to explore the family members' perceptions of the strategies nurses use and the effectiveness of these strategies. Participants were recruited from a 16 bed adult medical ICU and a 16 bed surgical ICU at Duke Hospital, a tertiary care university hospital system.
Results: These studies identified three roles enacted by nurses: information broker, supporter, and advocate. While enacting these roles, nurses used a myriad of strategies categorized into five approaches: Demonstrate concern, build rapport, demonstrate professionalism, provide information, and support decision-making. This study provides empirical evidence that when interacting with family members of patients who were transitioning from curative to palliative care in the ICU, nurses used strategies that helped family members cope, to have realistic hope, to have confidence and trust, to prepare for the impending loss, to accept that their loved one was dying, and to make decisions. These findings also suggest that nurses were able to demonstrate flexibility in the use of the strategies, responding to the needs of the family members.
Although nurses used many helpful strategies to support family members, some nurses used strategies that negatively affected the family members' trust and confidence in the nurses, increased their difficulty coping, and, in some cases, might have delayed decision-making. Few of these strategies have been previously described in the nursing literature.
Summary: Knowledge from this study will pave the way for developing expert nursing practices for intervention studies targeting the areas identified as important by family members, most likely to improve their ability to make decisions on behalf of their loved one and to improve their well-being, and feasible in ICU environment.
Item Open Access Investigating Cognitive/Affective/Sleep disturbance symptoms in Patients Receiving High-Dose Interleukin-2 Therapy(2018) Mann, TaraPatients undergoing intensive treatments for life-limiting chronic illnesses such as cancer often experience severe cognitive, affective, and sleep disturbance symptoms. Immunotherapies such as high-dose Interleukin-2 (IL-2) can result in severe alterations in cognition, affect, and sleep. These alterations not only prevent patients from receiving their full course of treatment but also severely impact the quality of life of patients and their care partners. A mixed-method case study approach was used to investigate the trajectory of these symptoms from three key informants (the patient receiving IL-2, the care partner, and the primary nurse) in ten IL-2 cases over up to four treatment hospitalizations. Quantitative measurement scores and qualitative reports of symptom change were compiled to understand the symptom trajectory within and across treatment hospitalizations.
This dissertation includes a systematic literature review in Chapter 2 that highlights the lack of trajectory analysis surrounding cognitive, affective, and sleep disturbance symptoms in patients undergoing IL-2, as well as the gravity and impact that these symptoms have on patients and their families. Chapter 3 features the study team’s evaluation of methods using a case study approach to collect quantitative and qualitative data from one patient, care partner, and primary nurse as a case triad to examine cognitive, affective, and sleep disturbance symptoms one patient diagnosed with MRCC experienced during one hospitalization for IL-2 treatment and served as the foundation for the larger study. Chapters 4 and 5 synthesized data from case informants in the larger study and described the trajectory of cognitive symptoms and affective and sleep disturbance symptoms, respectively, that patients receiving IL-2 therapy for renal cell carcinoma experienced within and across hospitalizations.
Cognitive, affective, and sleep disturbance symptoms are often synergistic and interdependent. Of these symptoms, fatigue and anxiety were the most frequently reported, worsening with each subsequent dose of IL-2, suggesting a cumulative dosing effect. Interventions should be uniquely designed to target patients receiving IL-2, care partners, nurses, and the healthcare team with the aim of reducing commonly reported yet severely incapacitating symptoms. A reduction in these symptoms can reduce other cognitive, affective, and sleep disturbance symptoms, improving the patient’s overall symptom trajectory experience.
Item Open Access Multiple Co-occurring Symptoms in Patients with Gastrointestinal Cancers(2021) Lin, YufenBackground: Patients with gastrointestinal (GI) cancers experience 10 to 15 co-occurring symptoms during chemotherapy that decrease their functional status, quality of life (QOL), and overall survival. The purposes of this dissertation were to describe symptom experiences and self-management strategies for multiple co-occurring symptoms in patients with gastric cancer; identify the subgroups of patients with GI cancers based on their distinct symptom experience profiles; and determine differences among these subgroups in demographic and clinical characteristics, as well as co-occurring symptoms and QOL outcomes.
Methods: An integrative review, a qualitative study, and three quantitative studies (i.e., one was cross-sectional, two were longitudinal) were used in this dissertation. Twenty-five studies were included and systematically evaluated in the review. Ten participants were interviewed for their symptom experiences and self-management strategies. Patients (n=405) completed questionnaires (e.g., the Memorial Symptom Assessment Scale, the Lee fatigue Scale, the General Sleep Disturbance Scale) six times over two cycles of chemotherapy. Content analysis was used to analyze the qualitative data. Latent class/profile analysis was used to identify the subgroups of patients with distinct symptom profiles. Differences in demographic and clinical characteristics as well as co-occurring symptoms and QOL outcomes among the subgroups were evaluated using parametric and non-parametric analyses.
Results: The most common symptoms were categorized into physical and affective/cognitive domains. Patients reported a large amount of inter-individual variability and dynamic nature in their experiences of multiple co-occurring symptoms. Four symptom self-management strategies were identified: medications for symptoms, information-seeking from the clinician team, lifestyle modifications, and psychosocial and spiritual support. The risk factors for a higher symptom burden included younger age, not being married/partnered, being unemployed, having childcare responsibilities, lack of regular exercise, having a lower functional status, having a higher comorbidity burden, and self-reported diagnosis of depression. Patients with a more severe symptom profile reported higher levels of morning and evening fatigue, sleep disturbance, anxiety, depressive symptoms, and pain, as well as lower levels of attentional function and QOL scores at enrollment.
Conclusions and Implications: This dissertation is the first to identify the subgroups of patients with GI cancers with distinct symptom experience profiles and examine a number of risk factors associated with more severe symptom profiles, as well as describe symptom experiences and self-management strategies for multiple co-occurring symptoms in patients with gastric cancer. Additional research is warranted to explore underlying mechanisms that contribute to the development of multiple co-occurring symptoms during chemotherapy. Clinicians need to assess for common risk factors and associated co-occurring symptoms, as well as initiate personalized symptom management interventions and referrals.
Item Open Access Symptom Trajectories and Self-Management in Systemic Sclerosis(2021) Wojeck, RobynSystemic sclerosis is a rare, chronic, and progressive autoimmune disease associated with significant symptom burden. There is no cure for systemic sclerosis and patients are challenged with self-managing debilitating symptoms, such as anxiety, depression, fatigue, sleep disturbance, and pain. Symptom research has predominately focused on the prevalence and severity of individual symptoms and their relationship with patient outcomes. However, little is known about the synergistic effects of these symptoms and how those with systemic sclerosis self-manage their symptoms. As such, the purpose of this dissertation was to advance the science of symptom self-management by gaining a deeper understanding of the complex symptom experiences and their link to self-management outcomes in adults with systemic sclerosis.
First, we assessed the state of the science of self-management interventions in systemic sclerosis to gain a deeper understanding of the essential intervention components and their impact on key self-management outcomes. We found significant variability in the types of interventions, their components, and their impact on self-management outcomes. Second, we explored the relationship between pain and self-efficacy for managing pain, as well as changes in pain over time. Our findings underscored the presence of chronic pain and provided important insights into the longitudinal pain experiences of patients with systemic sclerosis. Building upon these findings, we explored the synergistic effects of anxiety, depression, fatigue, sleep disturbance, and pain to identify five distinct subgroups of patients who shared similar symptom experiences. We explored the individual characteristics of each subgroup and their relationship to physical function, which provided a more comprehensive understanding of those at greatest risk for more severe symptom burden and poorer physical function.
Findings from this dissertation provide a new lens for symptom self-management research in systemic sclerosis. In our studies, we captured the unique and complex symptom experiences of those living with systemic sclerosis and their association with psychosocial characteristics and self-management outcomes. Our findings underscore the importance of increased awareness and evaluation of these symptoms as well as the need for the development and testing of symptom self-management interventions in this population. Findings from this dissertation provide a foundation for future studies aimed at better understanding the dynamic nature of symptoms experienced by those with systemic sclerosis and will inform the development of symptom self-management interventions in this population.