1,332 research outputs found

    Care Planning at the End-of-Life: Potential Use of the interRAI Palliative Care Assessment Instrument Clinical Assessment Protocols (interRAI PC CAPs) to Identify the Needs of Persons Receiving Palliative Home Care Services in Ontario, Canada

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    Relief from pain and distressing symptoms associated with a life limiting illness is an issue relevant to all Canadians. Provision of high quality care for persons nearing the end of life may improve the health and quality of life of the person and affects the health and well-being of members of their informal support network including family, friends, and caregivers. Palliative care, a person-centered approach to care for persons faced with a life limiting illness and their informal support network, focuses on the ‘total person’ or ‘whole self’ addressing the multifaceted complex needs of each person on an individualized basis. Palliative care is recognized by the World Health Organization (WHO) to be “achieved through prevention and relief of suffering by means of early identification, comprehensive assessment, and treatment of pain and physical, psychosocial, or spiritual problems” (World Health Organization [WHO], 2010). The palliative care philosophy prioritizes self-determination of the person and supports their engagement in the care planning and decision making process across the illness trajectory. Approximately one fifth of persons who die annually experience unrelieved suffering (Doyle & Woodruff, 2013). Persons nearing the end-of-life face can face a wide range of challenges that may include: uncontrollable pain and physical symptoms, unresolved and emotionally distressing psycho-social issues, and fear of one’s own mortality and of an unknown future. Nearly two thirds of Canadians who die each year may benefit from palliative care (Canadian Hospice Palliative Care Association [CHPCA], 2010), however only approximately one in eight of those persons are able to access palliative care services (Carstairs & Beaudoin, 2000). Comprehensive clinical assessment supports clinicians to make evidence-informed decisions and promotes a person-centered approach to care planning. The interRAI Palliative Care assessment instrument (interRAI PC) is a comprehensive standardized assessment instrument, designed for use by facility and community based palliative care services, with applications that include care planning, outcome measurement, quality monitoring, and resource allocation (Hirdes et al., 1999; Steel, et al., 2003; Gray, et al., 2009; Hirdes et al., 2008). Using pilot data gathered from the interRAI PC, this thesis examines the potential use of interRAI PC assessment data, and in particular how evidence from the interRAI PC Clinical Assessment Protocols (CAPs) has the potential to inform individualized care plan development for persons with a life limiting illness. This thesis begins with a scoping literature search that describes palliative care in a Canadian context and explores care planning with the interRAI PC. This is followed by three research based chapters (Chapters 6, 7, and 8) that include analysis based on pilot data gathered between 2006 and 2011 using the interRAI PC assessment instrument. Community dwelling persons with a life limiting illness receiving palliative home care services in six geographic locations across Ontario, Canada, were included in these analyses. Persons with a life limiting illness residing in institutional or hospice facilities, or in jurisdictions outside of Ontario, were excluded. Analyses were performed using SAS Version 9.2 with an alpha level of p< 0.05 for all statistical tests unless otherwise stated. The University of Waterloo’s Office of Research Ethics granted ethics clearance for this research (ORE# 19424) November 29th, 2013. The first research chapter (Chapter 6) describes how clinicians may use the interRAI PC Clinical Assessment Protocols (CAPs) to inform care planning. It includes an overview of the suite of eight CAPs and provides a background description of the CAP development process. Discussion addresses the unique distributional characteristics of each CAP and describes a hierarchical triggering structure. Following, chapter six which provides an overview of the interRAI PC CAPs from a broad perspective; chapter seven (the second research chapter) takes a more in-depth focus investigating the Dyspnea CAP. Dyspnea was selected as the symptom of focus because it is the one of the most commonly triggered CAPs affecting nearly half of the sample palliative home care population used in this thesis and is reported to be one of the most distressing symptoms affecting both the person faced with a life limiting illness and their informal caregivers (Ng &von Gunten, 1998; Potter, Hami, Bryan, & Quigley, 2003; Dellon et al., 2010; Kroenke, Johns, Theobald, Wu, & Tu 2013). Chapter seven examines the Dyspnea CAP and describes the prevalence of dyspnea. This chapter demonstrates the relationship between dyspnea and prognosis as well as other clinical factors. Moreover, how the presence of dyspnea changes over time is examined and person-level characteristics, some of which are potentially amenable to change, that affect the risk for dyspnea over time are identified. In addition, risk and protective factors for persons who over time developed new dyspnea symptoms and for those who recovered from dyspnea are examined. Recognizing that a hallmark of the palliative care philosophy is its aim to provide the highest quality of care and support for both the person nearing the end of life and members of their care network including their informal caregivers, the third research chapter (Chapter 8) examines distress experienced by both the caregiver and the care recipient as a unit of care. As quality palliative care may increase satisfaction with care, improve global quality of life for client and their caregiver, reduce physical symptoms like dyspnea, decrease signs of depression or anxiety, and improve access to health care resources (Kane, Bernstein, Wales, Leibowitz, & Kaplan, 1984; Melin-Johansson, Axelsson, Gaston-Johansson, & Danielson, 2010) the association between the presence of dyspnea and distress experienced by members of the caregiver-client unit of care is examined to illustrate how dyspnea relates to distress, a major problem affecting over half of the caregiver-client units of care. Together, findings from this thesis show that if one or more interRAI PC CAPs are triggered then the clinician should take notice. Data from the interRAI PC and more specifically from the interRAI PC CAPs examined in this thesis provide evidence on their potential to inform greater understanding of the complex needs of palliative home care clients. Better understanding of the interRAI PC CAPs and identification of patterns in CAP triggering structure suggest symptoms where clinicians may focus increased attention. To address the accumulative complex needs of persons who are faced with a life-limiting illness and the needs of their caregivers, resource allocation focused on evidence gathered from a comprehensive standardized assessment instrument should be prioritized

    Strengthening patient-family engagement amidst a pandemic: Lessons learned and paths forward

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    The COVID-19 pandemic was highly disruptive to healthcare and negatively affected healthcare worker and patient experience on multiple levels. Patient Family Advisors serve an important role in partnering with health systems to improve patient experience, yet the work of many volunteer programs were interrupted by the onset of the pandemic, at a time when integrating patient voice into care delivery was sorely needed. This case study presents one health system’s experience adapting a system-wide Patient Family Advisory program in the setting of the COVID-19 pandemic, including the transition to a virtual format and increased flexibility in how Patient Family Advisors engage with staff projects. Despite challenges, we were able to maintain meaningful Patient Family Advisory program work throughout the first two years of the pandemic, with at least fifteen Patient Family Advisor project activities each six months. We focused on three primary areas: early patient engagement, increasing visibility of patient engagement, and increasing the effectiveness of our Patient Family Advisors. Adaptation to virtual meetings and adding project-based embedments in addition to traditional council models also allowed the recruitment of new, diverse PFA membership. Commitment to patient engagement and co-design can be challenging but is of particular importance during times of stress for health systems. Flexibility in methods to engage and utilize Patient Family Advisors are needed to maintain success. Increasing agency of Patient Family Advisors will drive meaningful engagement for both volunteers and staff. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

    KEGGgraph: a graph approach to KEGG PATHWAY in R and bioconductor

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    Motivation: KEGG PATHWAY is a service of Kyoto Encyclopedia of Genes and Genomes (KEGG), constructing manually curated pathway maps that represent current knowledge on biological networks in graph models. While valuable graph tools have been implemented in R/Bioconductor, to our knowledge there is currently no software package to parse and analyze KEGG pathways with graph theory

    E-Leisure and Older Adults: Findings from an International Exploratory Study

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    Although benefits of leisure and benefits of technology use overlap, how older adults use and perceive of technology use during their leisure time is not well understood.The purpose of this study was to explore e-leisure among older adults. This international exploratory study included 37 rural and urban-dwelling participants from Canada and the United Kingdom. Focus groups were facilitated to better understand participants’ perceptions of technology in later life. Data were analyzed using open and focused coding. Participants reported accessing leisure through technology, such as keeping in touch, engaging in games and hobbies, and supplementing offline leisure. Participants reported several drawbacks, including difficulty getting assistance from other people, challenges using and updating software, concerns related to privacy and security, and lack of confidence and interest. While technology appears to facilitate engagement in leisure for older adults, educational opportunities may be required to overcome the drawbacks of technology use. Implications for therapeutic recreation are considered

    Extraordinary optical transmission with coaxial apertures

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    Recently it has been predicted that “cylindrical” surface plasmons (CSP’s) on cylindrical interfaces of coaxial ring apertures produce a different form of extraordinary optical transmission that extends to ever increasing wavelengths as the dielectric ring narrows. This letter presents experimental confirmation of this CSP assisted extraordinary transmission. Nanoarrays of submicron coaxial apertures are fabricated in a thin silverfilm on a glass substrate and far-field transmission spectra are measured. The experimental spectrum is in close agreement with predictions from finite-difference time-domain simulations and CSP dispersion theory. The role of cylindrical surface plasmons in producing extraordinary transmission is thus confirmed.This work was partially supported by the Office of Naval Research. Computations were carried out under the Department of Defense High Performance Computation Modernization Project. The support of the Australian Research Council through its Centers of Excellence, Federation Fellow and Discovery programs is gratefully acknowledged

    Chimeric protein and nano-construct for tissue-retained enzyme to locally suppress inflammation

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    There is considerable need for new retention strategies of immunomodulatory biologics for localized suppression of inflammation. We developed a chimeric protein as a well as a self-assembled nano-construct incorporating novel approaches for both retention and suppression to induce potent, confined metabolic programming. Immunosuppressive indoleamine 2,3 dioxygenase (IDO), which depletes tryptophan through the kynurenine pathway, was fused to Galectin 3 (Gal3), which binds extracellular glycans and provides tissue anchoring. Using a luciferase-Gal3 fusion reporter, tissue retention was prolonged to ~6 d whereas native luciferase is not retained and undetectable by 24 h. IDO-Gal3 injected subcutaneously controlled local LPS-challenged tissue inflammation. Furthermore, subgingival injection suppressed periodontal disease (PD) in a polymicrobial challenged mouse model. Multiplex analysis of gingival tissue revealed decreased inflammatory (IL-1ÎČ, IL-12p70, KC, IP10, MCP1, MIP2) and increased anti-inflammatory (IL-10, TGFÎČ3) proteins, indicating a shift toward homeostasis. Animals treated with IDO-Gal3 also showed significant decrease in bone loss commonly associated with PD, as determined by ”CT analysis

    Effect of developmental stage of HSC and recipient on transplant outcomes

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    The first hematopoietic stem cells (HSCs) that engraft irradiated adult mice arise in the aorta-gonad-mesonephros (AGM) on embryonic day 11.5 (E11.5). However, at this stage, there is a discrepancy between the apparent frequency of HSCs depicted with imaging and their rarity when measured with limiting dilution transplant. We have attempted to reconcile this difference using neonatal recipients, which are more permissive for embryonic HSC engraftment. We found that embryonic HSCs from E9.5 and E10.5 preferentially engrafted neonates, whereas developmentally mature, definitive HSCs from E14.5 fetal liver or adult bone marrow (BM) more robustly engrafted adults. Neonatal engraftment was enhanced after treating adult BM-derived HSCs with interferon. Adult BM-derived HSCs preferentially homed to the liver in neonatal mice yet showed balanced homing to the liver and spleen in adults. These findings emphasize the functional differences between nascent and mature definitive HSCs
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