205 research outputs found
Medication and symptom management in persons living with HIV. perceptions and collaboration of persons living with HIV, their close support persons and healthcare providers
No full textOver the past two decades, developments in the treatment and monitoring of HIV Infection have
radically reduced morbidity and mortality rates among those affected by it [1]. Between 1996 and
2005, the estimated life expectancy for persons living with HIV (PLWH) placed on combined
antiretroviral therapy (cART) at age 20 rose from 36.1 to 49.4 years [2].
Focusing on the improvement of health outcomes for the estimated 33 million PLWH worldwide, the
situation differs considerably between low- and high-resource settings. Broader access to cART
should substantially improve health outcomes for PLWH in low-resource settings, where supplies
currently meet only 31% of the estimated global need [3]. However, such steep improvements are no
longer a realistic option for high-resource settings. In western and central Europe, for example, longterm
treatment is already provided to 90 -100% of PLWH and initial drops in mortality and morbidity
have been sustained [4].
In high resource settings, though, long-term treatment experiences have shown that non-adherence to
medication regimens is a serious issue. Since ART demands a constant level of medication to suppress
viral replication, once started it has to continue without interruption. Compelling evidence has linked
treatment interruptions, including medically guided ones, with poorer clinical outcomes compared to
continuous treatment, i.e., near-perfect adherence [5].
However, long term adherence is complicated by a range of barriers, including the medications’
adverse effects: estimates of prescribed cART doses actually taken in Europe and Northern America
range from 60%-70% [5-8]. As a result, medications’ adverse effects, opportunistic infections and comorbidities
keep the prevalence of symptoms consistently high, averaging 8-14 symptoms per person
[9-12]; and a high number of distressing symptoms has been shown to further complicate adherence to
cART [9].
Regarding the stabilization of health outcomes for this treatment-experienced population of PLWH,
major advances are no longer possible based solely on treatment access. It is clearly necessary to
formulate new management strategies that consider multiple aspects of this chronic condition,
focusing in particular on the skills needed by PLWH and their close support persons (CSPs) to manage
their condition at home on a daily basis.
In order to improve health outcomes for patients with chronic conditions, various studies have shown a
need for profound changes across diverse levels of the health care system [9, 13, 14]. The WHO
publication ‘Innovative Care for Chronic Conditions’ structures chronic care management areas
requiring change into micro, meso, and macro levels, with each level interacting with and dynamically
influencing the others. The macro level consists of policy makers who influence standards and
incentives for quality care; the meso level includes healthcare organizations and communities; and the
micro level is the level of patient interaction, where patients’ self management and collaboration between health care providers and patients are key issues [15]. By providing a fuller understanding of
PLWH’s self-management and collaboration with CSPs and health care providers (HCPs) within the
care process, the research represented here should help answer questions of how and where to improve
care for PLWH on the micro (patient) level.
In the context of chronic disease management, “self-management” has become a widely used
term, encompassing the day-to-day activities a chronic illness patient performs to minimize the
consequences of his or her condition. Such actions vary based on the person’s perceptions, experiences
and expertise, but share the focus of optimizing health outcomes, whether by retarding deterioration,
maintaining a given level of health, or improving overall wellness [16-18]. Additionally selfmanagement
is increasingly recognized as a dynamic process that includes active collaboration with
others, especially close support persons (e.g., partners, friends, family) and healthcare providers [18,
19]. Yet the skills that enable healthcare providers and close support persons to work with PLWH’s
self-management have only been vaguely described.
Although patient self-management shows similarities across a range of chronic conditions,
every condition has unique challenges that require specialized self-management tasks. HIV specific
self-management tasks have been summarized into eight categories: medication management,
symptom management, substance use management, lifestyle management, emotional management,
role management, transmission management, and social management. From a medical perspective
with a focus on improving health outcomes, medication and symptom management may be regarded
as the core tasks of HIV self-management. After all, a person’s experience of symptoms is closely
related to adherence to cART (i.e., adherence decisions are often based upon symptoms), and
adherence is closely related to treatment success [9, 20, 21].
In the current literature, medication management and symptom management – the two selfmanagement
tasks upon which this thesis focuses – have mainly been described in a fragmented way,
with close attention paid only to one or the other, despite considerable evidence linking the two
closely [9, 21-23].
Medication management encompasses decisions related to initiating or changing cART regimens [24-
26]. Once started, the new or changed regimens have to be integrated into daily life and adherence
maintained over time. Eventually, this also entails the management of adherence related obstacles [6,
27]. Opportunistic diseases and/or co-morbidities often require further medication management.
Symptom management encompasses the assessment, evaluation and monitoring of symptoms [21].
Decisions are necessary on how to deal with symptoms, such as when to contact healthcare providers,
whether or not to alter exercise or diet, and when to take — or not take — certain medications [28].
For PLWH, the formulation and adoption of many medication and symptom management strategies
involves collaboration with their HCPs and CSPs; yet, despite the seemingly obvious benefits of such
collaboration, the related processes are only vaguely understood. Since self-management activities regarding both medications and symptoms are closely associated with health outcomes, a fuller
understanding of such activities is necessary to improve related services.
The overall aim of this exploratory mixed method research program was to describe PLWH’s
symptom and medication management activities, focusing on collaboration between PLWH, CSPs and
HCPs, from the perspectives of all three groups. Four articles presented the results.
The first, a clinical case report, describes the complexity of self-management support in clinical care
and illustrates how interventions that were individualized, culturally sensitive, and provided by a team
of health care providers enabled the patient to optimize his adherence, which led to significant
improvement in his clinical surrogate markers and subjective quality of life.
Second, a literature review summarized the evidence resulting from randomised controlled trials of
interventions designed to enhance medication adherence to antiretroviral therapy. The review showed
that effective programs combine several methods, and highlighted a continuing need for long term
programs tailored to patient needs.
The third article dealt with PLWH’s experiences with the management of medications and symptoms, along with their collaborations with close support persons and health care providers within
this process. The narratives of 13 PLWH revealed that even small changes in health and treatment
could change participants’ impressions of maintaining or “losing their grip” on HIV. To keep their
grip, participants constantly monitored their condition, developed expertise in care and symptom
management, and included input from healthcare providers and close support persons in their
management processes. Despite the clear need for partnerships with HCP, PLWH described this area
of collaboration as sometimes supportive, sometimes a hindrance.
The final article reported on the use of an exploratory mixed methods approach to examine the
collaboration of PLWH and their CSP within the process of symptom management, including a
comparison of the two players symptom reports. Qualitative results revealed that collaboration
typically depended on distinct but integrative positions of PLWH and CSP, with the PLWH in a clear
leadership role.
These roles were reflected in diverse themes of daily symptom management, and later confirmed in
the quantitatively assessed symptom experience reports, where PLWH reported significantly more
symptoms over the previous week – an average of 16 (Q1=9; Q3=24), compared to CSPs’ 12 (Q1=5;
Q3=17). This disproved two of our initial hypotheses – first, that certain symptoms would be reported
more often by CSPs (this was never the case), and second, that where the PLWH reported symptoms as very distressing, symptom reports by PLWH and CSP would not differ.
The results of this research program contributed to the existing knowledge by using the
conceptualization of Loring and Holman to describe HIV specific self-management tasks and skills [17]. This comprehensive description can be used as a guiding framework to plan both clinical selfmanagement
support interventions and HIV self-management oriented research projects.
Another important contribution was the replication of the observation by Thorne et al. that chronically
ill patients at some point made an active decision to control the effects of their condition [18]. The
constitutive pattern “I have a grip on HIV - HIV has a grip on me” revealed a similar phenomenon.
However, in contrast to earlier investigations, examining this phenomenon provided insights into a
dynamic process. Throughout the course of the condition, health and/or treatment changes could
influence the perception of “having a grip on HIV” or losing it. These alternating conditions could
constitute a phenomenon more pregnant in HIV than in chronic conditions with more predictable
illness trajectories. Additionally, since the “HIV has a grip on me” perception was associated with
feelings of uncertainty, fear and loss of morale, and since depressive symptoms clearly hinder
effective self-management, this phenomenon certainly warrants clinical examination [28-30].
A particularly important outcome of this research program is the deepening of our understanding of
collaboration between PLWH and CSP. Concordant with earlier reports, the narratives of PLWH and
CSP presented in Chapter Six revealed that PLWH collaborated closely with their CSPs to manage
their condition [31-33]. Yet, in contrast to earlier investigations, this collaboration was characterized
by distinct roles: as ‘managers’, the PLWH took a clear lead on the overall management of the
condition, whereas, as ‘companions’, their CSPs tried to find and support aspects of self-management.
The PLWH’s leadership role was, in fact, much clearer here than in previous studies, which
emphasized the partnership aspects of the PLWH/CSP relationship. This insight into the collaboration
of PLWH and CSP may provide a foundation upon which to integrate CSP into research based clinical interventions.
To our knowledge, concordance between the symptom reports of patients and their CSPs has never
before been described for the PLWH population. We therefore provide the first recorded insights into
the issue. Compared to earlier investigations in cancer populations, where CSPs reported more
symptoms than patients [34, 35], PLWH in this study consistently reported significantly more.
Additionally, we described an inter-method inconsistency that indicates a need to better understand
management of neurocognitive symptoms from PLWH’s and CSP’s perspectives. Our qualitative
analysis revealed a cluster of neurocognitive symptoms that CSPs recognized but did not wish to
discuss with their partners; and the quantitative assessment of concordance between symptom reports
revealed that all symptoms were reported more often by the PLWH.
Regarding collaborations with HCPs, in accord with previous research, our results illustrated that this
group can both hinder and enable PLWH’s self-management [36-38]. PLWH’s narratives provided
insights into the respective negative and positive aspects of their relationships with HCPs. On one
hand, the need for providers to use a patient centered approach, including recognizing each person as a
unique human being, is highlighted and has already proved important in a broad range of studies [36,38-40]. On the other hand, our findings also highlight the importance of HIV-specific competence on
the part of healthcare providers. Second in importance to overall medical competence, this includes the
ability to assess a patient’s symptom experience in a non-judgmental manner, to collaboratively
develop medication and symptom management strategies, to provide ongoing education on those
topics, and finally to assist patients in decision making and in the coordination of their various health
problems.
Also significantly, this research program determined that CSP were only very slightly integrated into
clinical care, meaning their collaboration with health care providers was marginal. Since PLWH need
their CSPs to act as active partners to manage the disease, not integrating them into self-management
support is a missed opportunity to strengthen PLWH’s self-management.
In summary, this study program provided new insights and raised further questions. Subsequent
research should focus on a qualitative meta-synthesis and development of the phenomenon of “having
a grip” or “being in control” of a chronic condition, descriptions of HCPs’ perspectives of
collaboration, a better understanding of the concordance between PLWH’s symptom reports and those
of CSP – particularly in relation to neurocognitive symptoms and regarding strategies for integrating
CSP’s into intervention programs and clinical processes
The story
No full textKratka, topla, često bolna, od srca ispričana ljudska priča iz pera Dunje Frankental (rođene Kovačević). Njena životna sudbina, vjerovatno i nenadano, nekim sudbonosnim nitima i vezama, dovodi je u Izrael. U toj priči jednostavnoj i po naslovu, a naizgled i realno nevelikog i obima, ispričana je životna sudbina njene porodice, tako lako prepoznatljiva i u mogućim životnim okolnostima mnogih od nas! Da li se porodični ’životni krug’ opisanih sudbina i događaja ’zatvorio’ ... ili ne ... neka o tome sude oni koje je pročitaju, a vjerujem da ni sama autorka ne može i neće na ovo dati ’konačni odgovor’.A short, warm, often painful, heartfelt human story from the pen of Dunja Frankental (née Kovačević). Her fate in life, probably unexpectedly, by some fateful threads and connections, brings her to Israel. In that story, which is simple in its title, and seemingly realistically small in scope, the life fate of her family is told, so easily recognizable even in the possible life circumstances of many of us! Whether the family 'circle of life' of the described destinies and events has 'closed' ... or not ... let those who read it judge that, and I believe that even the author herself cannot and will not give a 'final answer' to this
April fool
No full textCatalogue essay by Dunja Rmandic.
"Presenting photography, mixed media, video and installation."
Published to accompany the exhibition held at C3 Contemporary Art Space, Abbotsford, Vic., in 2009
Self-Assessment Tool to Promote Organizational Health Literacy in Primary Care Settings in Switzerland
No full textDe Gani SM, Nowak-Fluck D, Nicca D, Vogt D. Self-Assessment Tool to Promote Organizational Health Literacy in Primary Care Settings in Switzerland. International Journal of Environmental Research and Public Health. 2020;17(24): 9497.Dealing with health information and taking care of one's own health are key aspects of health literacy and a difficulty for nearly half of the population in Europe. Limited health literacy often results in poorer health outcomes. Health literacy is a fundamental health determinant, and its improvement provides great potential for addressing public health challenges. Health care organizations play an important role in improving population's health literacy. Health literate health care organizations facilitate access, understanding and use of health information and decrease the demands and complexities of the health care system. Few efforts have been taken so far to promote organizational health literacy, especially in German-speaking countries. This project aimed at developing a self-assessment tool, which enables primary care organizations to assess and improve their level of health literacy. The self-assessment tool was developed and evaluated with general practitioners and community care organizations in Switzerland. Here the participative development process, outcomes and the three modules of the self-assessment tool are presented: (1) manual with detailed introduction and instruction, (2) checklist for self-assessment of organizational health literacy and (3) handbook with measures for improvement. The aim of this tool is that organizations are able to identify the need for action, plan and implement improvement measures
Rituals of the enchanted world: Noh theater and religion in medieval Japan
No full textThis study explores of the religious underpinnings of medieval Noh theater and its operating as a form of ritual. As a multifaceted performance art and genre of literature, Noh is understood as having rich and diverse religious influences, but is often studied as a predominantly artistic and literary form that moved away from its religious/ritual origin. This study aims to recapture some of the Noh’s religious aura and reclaim its religious efficacy, by exploring the ways in which the art and performance of Noh contributed to broader religious contexts of medieval Japan.
Chapter One, the Introduction, provides the background necessary to establish the context for analyzing a selection of Noh plays which serve as case studies of Noh’s religious and ritual functioning. Historical and cultural context of Noh for this study is set up as a medieval Japanese world view, which is an enchanted world with blurred boundaries between the visible and invisible world, human and non-human, sentient and non-sentient, enlightened and conditioned. The introduction traces the religious and ritual origins of Noh theater, and establishes the characteristics of the genre that make it possible for Noh to be offered up as an alternative to the mainstream ritual, and proposes an analysis of this ritual through dynamic and evolving schemes of ritualization and mythmaking, rather than ritual as a superimposed structure.
Chapters Two through Five are analyses of four Noh plays, Kanawa, Dōjōji, Yamamba, and Hyakuman. This selection reflects my argument that a particularly efficacious form of Noh ritual is one that best responds to the liminal quality of the medieval worldview, and this is expressed through a specific way in which the main protagonist of each play is constructed as a ritualist and an object of ritual, and symbolically embodied in various incarnations of the character of demon - oni.Submission published under a 24 month embargo labeled 'Closed Access', the embargo will last until 2018-12-01The student, Dunja Jelesijevic, accepted the attached license on 2016-08-11 at 12:00.The student, Dunja Jelesijevic, submitted this Dissertation for approval on 2016-08-11 at 12:13.This Dissertation was approved for publication on 2016-08-11 at 16:02.DSpace SAF Submission Ingestion Package generated from Vireo submission #10109 on 2017-02-28 at 14:40:43Made available in DSpace on 2017-03-01T17:00:49Z (GMT). No. of bitstreams: 2
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Traduire en transparence : génétique d’une version du poème Dunja de Giuseppe Ungaretti
No full textEn 1969, Philippe Jaccottet traduit pour la revue Aquila le poème Dunja de Giuseppe Ungaretti. L’étude tente de relever la singularité de cette traduction, en jetant de la lumière sur la génétique de sa rédaction : autrement dit, de pénétrer le côté invisible du processus traductif auquel collaborent l’auteur et le traducteur. À partir de la clarification terminologique de la notion de transparence, elle s’applique à élucider les stratégies du traducteur, en mettant en relief la dialectique de l’hermétique et de l’herméneutique. La juxtaposition des versions jaccottiennes du poème, élaborées au cours du « work in progress », renseigne sur les étapes de la traduction transparente, à commencer par le travail sur le lexique qui concerne la recherche d’équivalence. Elle révèle en outre les hésitations et les doutes d’un traducteur averti, conscient de l’impossibilité de comprendre l’énoncé poétique, en négligeant ses aspects affectif, imaginal et prosodique. Pour aboutir à la conclusion qu’il s’agit bien d’une traduction « relevante », résultat d’un travail minutieux sur les potentialités de la langue cible, qui n’hésite pas à transgresser les normes grammaticales de celle-ci afin de préserver l’étrangeté du texte source.In 1969 Philippe Jaccottet translated for the magazine Aquila the poem Dunja by Giuseppe Ungaretti. The study aims to highlight the singularity of this translation, shedding light on the genetics of its writing: that is to say to penetrate the invisible side of translating in which both the author and the translator participate. Starting from the terminological clarification of the notion of transparency, it applies itself to elucidate the translator’s strategies by highlighting the dialectic of hermetics and hermeneutics. The juxtaposition of the poem’s versions, elaborated by Jaccottet during the work in progress, provides information on the stages of transparent translation starting with the lexical work which concerns the search for equivalence. It reveals furthermore the hesitations and doubts of a wise translator, aware of the impossibility of understanding the poetic statement by neglecting its emotional, imaginal and prosodic aspects. In order to reach the conclusion that this is indeed a “relevant” translation, resulting from a meticulous work on the potentialities of the target language, which does not hesitate to transgress its grammatical norms with the purpose of preserving the foreignness of the source text.En 1969, Philippe Jaccottet tradujo para la revista Aquila el poema Dunja de Giuseppe Ungaretti. El estudio tiene como objetivo destacar la singularidad de esta traducción, arrojar luz sobre la genética de su escritura: es decir, penetrar el lado invisible del proceso de traducción en el que participan el autor y el traductor. A partir de la aclaración terminológica de la noción de transparencia, se aplica para dilucidar las estrategias del traductor, destacando la dialéctica de la hermética y de la hermenéutica. La yuxtaposición de las versiones del poema, elaboradas por Jaccottet durante el trabajo en curso, proporciona información sobre los pasos de la traducción transparente, comenzando por el trabajo sobre el léxico que se refiere a la búsqueda de la equivalencia. Revela, además, las indecisiones y las dudas de un traductor advertido, consciente de la imposibilidad de comprender el enunciado poético, descuidando sus aspectos emocional, imaginal y prosódico. Para llegar a la conclusión de que se trata de una traducción “relevante”, resultado de un trabajo meticuloso sobre las potencialidades de la lengua meta, que no duda en transgredir sus normas gramaticales para preservar la extrañeza del texto fuente
Perceived HIV symptom manageability: synthesis of a new use for a known concept
No full textTo report the synthesis of the concept of perceived symptom manageability.; Common symptom assessment parameters fail to address concerns about the impact of symptoms on everyday life, overall functioning, or threats to individuals living with the human immunodeficiency virus. We claim that the concept of 'perceived symptom manageability' integrates these important dimensions of the patients' experience of their symptoms.; Online databases, thesauri, and dictionaries were accessed in January 2012. A free search was performed scanning the PubMed, CINAHL, and PsycINFO databases for entries from 2001-2011 using 'manageability' in the title or abstract as a search term.; Text-based analysis.; We followed the steps delineated by Walker and Avant for concept synthesis. Uses of the concept 'manageability' were identified and listed, meaningful usage clusters were generated, and a preliminary working definition was created.; Social resources and individual interpretation were relevant in view of managing a difficult situation, thus positioning 'manageability' in a social and interpretational context that exceeded objective control. We preliminarily defined perceived symptom manageability as 'the extent of the perceived ability to bring social and personal resources into play to successfully deal with or control symptoms, despite difficulties'.; We believe that our working definition represents a promising start to understand and address the manageability problems that individual patients face regarding particular symptoms and may serve as a basis to identify not only symptoms but also areas of intervention that are of most concern to individual patients
Erfahrungen von Advanced Practice Nurses mit einem klinischen Weiterbildungsstudiengang im Kontext ihrer beruflichen Entwicklung
No full textDas an der Universität Basel seit 2012 angebotene Diploma of Advanced Studies in Advanced Nursing Practice (DAS ANP-plus) ist ein klinischer Weiterbildungsstudiengang für die noch wenig etablierte Berufsgruppe der Advanced Practice Nurse (APN). In der Berufsbiografie und für die Tätigkeit der APN in der Patientenversorgung spielt der Erwerb klinischer Kompetenzen eine zentrale Rolle. Ziel: Mit der qualitativen Studie wurde exploriert, welche Erfahrungen APNs während und nach einer klinisch ausgerichteten postgradualen Weiterbildung in der Schweiz machten und welche bedeutenden Veränderungen sie dadurch in ihrer Berufsausübung erlebten. Methode: Reflexive thematische Analyse mit konstruktivistischer Orientierung. 14 Absolvent_innen wurden leitfadengestützt unter Einbezug der Berufsbiografie interviewt. Ergebnisse: „Die Vision verfolgen besser pflegen zu wollen“ ist das konstituierende Thema. Die Absolvent_innen scheinen von einer starken Vision getragen zu werden: vom Streben mehr wissen zu wollen, hin zur Umsetzung der Vorstellung ihrer Rolle bis zu innovativen Veränderungen in der Gesundheitsversorgung. Die Vision zu verfolgen ist durch drei Themen geprägt: „Die Herausforderungen als APN Fuß zu fassen“, vor dem Studiengang, „Sicherheit erlangen durch die Stärkung klinischer Kompetenzen“ während dem Studiengang und längerfristig „mit Verbündeten neue Wege in Versorgungssystemen gehen“. Schlussfolgerungen: Durch das DAS ANP-plus werden die klinischen Kompetenzen von APNs gestärkt, dabei nimmt die Supervision in klinischen Alltag eine bedeutende Stellung ein
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