Browsing by Subject "palliative care"
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Item Open Access Better Together: The Making and Maturation of the Palliative Care Research Cooperative Group.(J Palliat Med, 2017-06) Ritchie, Christine L; Pollak, Kathryn I; Kehl, Karen A; Miller, Jeri L; Kutner, Jean SOBJECTIVE: To describe the growth and outcomes of the Palliative Care Research Cooperative Group (PCRC). BACKGROUND: Despite advances, significant gaps remain in the evidence base to inform care for people with serious illness. To generate this needed evidence and bolster research capacity, the Palliative Care Research Cooperative (PCRC) group was formed. METHODS: The PCRC supports investigators in the conduct of multisite clinical studies. After developing a governance structure and completing a proof of concept demonstration study, the PCRC expanded its infrastructure to include additional resource cores (Clinical Studies; Measurement; Data Informatics and Statistics; and Caregiver Studies). The PCRC also supports an Investigator Development Center as many palliative care investigators valued opportunities to advance their skills. Additional key aspects of PCRC resources include a Scientific Review Committee, a Publications Committee, and initiatives to purposefully engage investigators in a community of palliative care science. RESULTS: The PCRC has grown to over 300 members representing more than 130 distinct sites. To date, the PCRC has supported the submission of 51 research applications and has engaged in 27 studies. The PCRC supports investigator research development needs through webinars and clinical trials "intensives." To foster a sense of community, the PCRC has convened biannual meetings, developed special interest groups, and regularly communicates via a newsletter and its website. CONCLUSION: With a particular focus on facilitating conduct of rigorous multisite clinical studies, the PCRC fosters an engaged multidisciplinary research community, filling an important void in generating and disseminating evidence that informs the provision of high-quality care to people with serious illness.Item Open Access Determining the Perceived Relative Importance of Physician Roles in Palliative Care through Best-Worst Scaling(2014) Jiang, WeixiIntroduction: A wide of range of physician roles in palliative care have been recognized by doctors in many countries. However, while the demand for palliative care keeps increasing in Singapore, there is a lack of understanding of Singaporean physicians' perceptions on their roles in palliative care. Assessment on the perceived relative importance of these physician roles is also needed for a thorough understanding of physicians' views on palliative care.
Method: Nine physician roles were evaluated through twelve best-worst tasks. The worst counts were subtracted from best counts to develop a B-W score for each physician role. Paired model and marginal model were adopted to obtain an estimation of the coefficient of each role through conditional logit regression. Covariate-adjusted latent class cluster analysis was performed to investigate the heterogeneity among physicians and explore what physician characteristics are associated differences in perception patterns.
Results: "Treating pain and physical symptoms" (1), "discussing end-of-life care preferences with patients" (2) rank top two, while "extending the patient's life as long as possible (8) and "withholding diagnosis if asked by family members" (9) are at the bottom regarding their perceived relative importance by respondents. The largest discrepancies regarding physicians' perceptions lie in "addressing patients' psychological needs", "addressing patients' spiritual needs" and "extending life as long as possible." Clinical grade and palliative care training status are found to have statistically significant association (P<0.05) with different patterns of perceptions among physicians.
Conclusion: Singaporean physicians attach high importance to treating pains and symptoms, and value communicating with patients about treatment preferences based on effective information exchange. Respondents generally tend to focus more on patients' overall quality of life than just extending patients' life. Experience (reflected by clinical grade) and palliative care training may influence physicians' perceptions on their roles in palliative care.
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 Parental Bereavement: Looking Beyond Grief - Challenges and Health(2016) Dias, NancyFor most parents there is no imaginable event more devastating than the death of their child. Nevertheless, while bereaved parents grieve they are also expected to carry on with their life. The day-to-day activities that were once routine for these parents may now be challenging due to the emotional turmoil they are experiencing. To date parental bereavement has been described as complex, intense, individualized, and life-long and their grief responses are interwoven with their daily activities, but the nature of their daily life challenges are not known.
This dissertation highlights the significance of how parents respond to their bereavement challenges because bereaved parents have higher morbidity and mortality rates than non-bereaved parents or adults who have lost their spouse or parents. Many bereaved parents in their daily routines include activities that allow them to maintain a relationship with their deceased child. These behaviors have been described as “continuing bonds”, but with this dissertation the continuing bonds concept is analyzed to provide a clear conceptual definition, which can be used for future research.
Using the Adaptive Leadership Framework as the theoretical lens and a mixed method, multiple case study design, the primary study in this dissertation aims to provides knowledge about the challenges parents face in the first six months following the death of their child, the work they use to meet these challenges, and the co-occurrence of the challenges, and work with their health status. Bereaved parents challenges are unique to their individual circumstances, complex, interrelated and adaptive, as they have no easy fix. Their challenges were pertaining to their everyday life without their child and classified as challenges related to: a) grief, b) continuing bonds, c) life demands, d) health concerns, f) interactions, and g) gaps in the health care system. Parents intuitively responded to the challenges and attempted to care for themselves. However, the role of the healthcare system to assist bereaved parents during this stressful time so that their health is not negatively impacted was also recognized. This study provides a foundation about parental bereavement challenges and related work that can lead to the development and testing of interventions that are tailored to address the challenges with a goal of improving bereaved parents health outcomes.