Listening to parents: The role of symptom perception in pediatric palliative home care.

OBJECTIVE: This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. METHODS: In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase). RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

Medical students' knowledge about end-of-life decision-making

The influence of medical students' knowledge concerning end-of-life care, considering ethical theories and clinical practice, remains controversial. We aimed to investigate medical students' knowledge of bioethical concepts related to moral kinds of death (euthanasia, disthanasia, and orthothanasia) and to analyze the influence of their clinical experience on practicing such approaches in a tertiary hospital in the state of São Paulo, Brazil. We interviewed 180 medical students [distributed in Group 1 (G1) - first to third- year students, and Group 2 (G2) - fourth to sixth-year students] to evaluate the influence of the course on "medical ethics" on ethical theories and clinical practice, using a closed questionnaire. The course on "medical ethics" did not distinguish the groups (P=0.704) in relation to bioethical concepts. Neologisms such as "cacothanasia" and "idiothanasia" were incorrectly viewed as bioethical concepts by 28% of the interviewees. Moreover, 45.3% of the sample considered health care professionals incapable of managing terminally ill patients, especially G2 (29%) as compared to G1 (16.5%, P=0.031). The concept of euthanasia was accepted by 41% of sample, as compared to 98.2% for orthothanasia. Among medical students that accepted ways to abbreviate life (22.9%), 30.1% belonged to G1, and only 16.1% to G2 (P=0.049). These medical students were unfamiliar with common bioethical concepts. Moreover, they considered healthcare professionals incapable of managing terminally ill patients. The ethical ideal of the "good death" reflects better acceptance of orthothanasia by medical students, suggesting a tendency to apply it in their future clinical practice.

Independent Chronicle Vol. XLVI No. 3470- July 14, 1814

A semi-weekly paper that was published from 1801 to 1817. It was previously called the Independent chronicle and the universal advertiser, and was later the Independent chronicle and Boston patriot (Semiweekly). Publishers were Abijah Adams and Ebenezer Rhoades. Topics of interest in this issue include: Page 1: report of Independence Day celebration including multiple toasts to the military; Page 2: report of South Carolina militia marching home; report of U.S. schooner Alligator being lost to a tornado in Port Royal; report of 10,000 militia and 2,000 regular Army troops to be used in defense of the District of Columbia and vicinity; report U.S. is to try to raise 100,000 militia for defense; news of British deserters providing information to the U.S.; report of skirmishes along the U.S. coast; statement from U.S. Navy Capt. David Porter stating he had taken possession of Sir Henry Martin's Island; report of British troops burning a militia barracks in Lewiston, N.Y.; 4 accounts of the battle of Chippewa and the taking of Fort Erie; statement from Maj. Gen. Brown in praise of his troops in the battle of Chippewa; copy of General Brown's orders to attack at Fort Erie; essay arguing against U.S. citizens boarding enemy ships; report of peace treaty rumours; Page 3: account of Capt. Porter's capture and subsequent escape from the British; list of American prisoners held on the British ship Nymph; report of British cargo ship captured by U.S. war ship; Proclamation from James Madison pardoning military deserters if they return to military service; announcement to officers and soldiers in the military offering reward for the return of military deserters; Page 4: 2 reward advertisements for return of military deserters;

Being a bereaved parent : early bereavement experiences and perspectives on paediatric palliative care and bereavement services

La mort d'un enfant est considérée comme l'une des expériences les plus difficiles à laquelle une personne puisse faire face. Les cliniciens, les hôpitaux et plusieurs organismes ont pour objectif d’aider les parents endeuillés, mais leurs efforts sont compliqués par un manque de recherche dans le domaine du deuil parental. Cette thèse est composée de trois articles, soit deux revues de littérature et une étude empirique, qui tentent de combler cette lacune et d’informer les services en soins palliatifs pédiatriques et les services de soutien au deuil en particulier. Le premier article porte sur les besoins des patients recevant des soins palliatifs pédiatriques et de leurs familles. Par le biais d’un méta-résumé de la recherche descriptive et qualitative récente, 10 domaines de besoins ont été identifiés qui correspondent aux lignes directrices actuelles en soins palliatifs pédiatriques et de fin de vie. Ces besoins sont présentés de manière à être facilement applicables à la pratique. Cependant, les résultats mettent aussi en évidence plusieurs aspects des soins identifiés comme déficitaires ou problématiques qui mériteraient une attention particulière dans le cadre de politiques futures. Dans le deuxième article, l'objectif était de résumer une vaste littérature d'une manière utile aux cliniciens. À cette fin, une synthèse narrative a permis d’intégrer la recherche quantitative et qualitative dans le domaine du deuil parental. Les résultats mettent en évidence les éléments susceptibles de favoriser l’adaptation des parents au deuil, éléments qui suggèrent par le fait même des avenues possibles de soutien et d'intervention. Cette synthèse a cependant cerné dans la littérature certaines failles méthodologiques qui rendent l'applicabilité clinique des résultats difficile. L'objectif du troisième article était d'informer les services de suivi et de soutien au deuil auprès des parents en se renseignant directement auprès de parents endeuillés. À cette fin, 21 parents (dont 8 couples) et 7 membres du personnel impliqués dans des activités de suivi de deuil de 2 hôpitaux pédiatriques ont été interrogés dans le cadre d’une description interprétative, et l'application clinique des résultats a été vérifiée par le biais de réunions avec des collaborateurs de recherche et les décideurs des centres hospitaliers. Les résultats décrivent comment les parents ont fait face à leur détresse dans la phase précoce de leur deuil, ainsi que leurs points de vue sur la façon dont les divers services de suivi de deuil ont été aidants. Les résultats suggèrent que les parents gèrent leurs sentiments intenses de douleur par une alternance de stratégies axées soit sur leur deuil ou sur leur quotidien et que dans plusieurs cas leurs relations avec autrui les ont aidé. Cette étude a également permis d'élucider la façon dont divers services de soutien aide les parents à aborder leur deuil. Les implications cliniques de ces résultats sont discutées ainsi que des recommandations à l’intention de ceux qui sont impliqués dans la provision des services en deuil.

Pliocene seasonality across the North Atlantic inferred from cheilostome bryozoans

Previous studies have shown an inverse correlation between zooid size in cheilostome bryozoans and ambient water temperature. This relationship underlies the MART technique which uses intracolonial variation in zooid size to predict mean annual range in temperature experienced by bryozoan colonies during their life. Here we apply the MART technique to study Early and Mid Pliocene bryozoans from Central America (Panama, Costa Rica), the USA (Florida, South Carolina, North Carolina, Virginia) and the UK (Suffolk) to reconstruct palaeoseasonality across a range of latitudes for the North Atlantic during the Pliocene Epoch. Compared to the present-day, our analyses suggest greater seasonality (ca 4.5 degrees C) in the southern Caribbean at the time of Cayo Agua Formation deposition (ca 4.25 Ma), in keeping with inferred upwelling prior to the closure of the isthmian barrier at 2.7 Ma. Bryozoans also indicate seasonal upwelling on the Gulf Coast of Florida in a similar manner to the present-day. Because upwelling can be highly localised and prone to spatial and temporal variation in the Gulf of Mexico today, it contributes little to a broad understanding of Pliocene North Atlantic waters. However, MART estimates for the coastal plain region indicate a general reduction in the annual range in temperature relative to the present, suggesting that the colder surface waters that today reach south to Cape Hatteras had less influence in Early to Mid Pliocene times. These results, along with evidence from other proxies, strongly support reduced seasonality and warmer conditions along the eastern seaboard of the USA in the Early to Mid Pliocene. Finally, the MART estimates amongst Coralline Crag localities provide evidence for an increased annual range in temperature in the southern North Sea than at present. Our study shows that bryozoan MART estimates provide a powerful, independent proxy for palaeoseasonality and is the first to demonstrate that the MART technique can be applied to infer palaeoclimates across a wide range of latitudes focusing on a variety of geological formations and geographical regions. Crown Copyright (C) 2009 Published by Elsevier B.V. All rights reserved.

Why cancer patients choose in-patient complementary therapy in palliative care: a qualitative study at Arokhayasala Hospice in Thailand

Cancer patients often choose complementary and alternative medicine (CAM) in palliative care, often in addition to conventional treatment and without medical advice or approval. Herbal medicines (HM) are the most commonly used type of CAM, but rarely available on an in-patient basis for palliative care. The motivations which lead very ill patients to travel far to receive such therapies are not clear. A qualitative study was therefore carried out to investigate influences on choosing to attend a CAM herbal hospice, to identify cancer patients’ main concerns about end-of-life care. Semi-structured interviews with 32 patients were conducted and analysed using thematic analysis. Patients were recruited from Arokhayasala, a Buddhist cancer hospice in Thailand which provides CAM, in the form of HM, a restricted diet, Thai yoga, deep-breathing exercises, meditation, chanting, Dhamma, laughter and music therapy, free-of-charge. The main factors influencing decision-making were a positive attitude towards HMs and previous use of them, dissatisfaction with conventional treatment, the home environment and their relationships with hospital doctors. Patients’ own perceptions and experiences were more important in making the decision to use CAM, and especially HM, in palliative cancer care than referral by healthcare professionals or scientific evidence of efficacy. Patients were prepared to travel far and live away from home to receive such care, especially as it was cost-free. In view of patients’ previously stated satisfaction with the regime at the Arokhayasala, these findings may be relevant to the provision of in-patient cancer palliative care to other patients.

Sjuksköterskors erfarenhet av att vårda patienter i livets slutskede enligt Liverpool Care Pathway (LCP) : En litteraturöversikt

Syfte: Att redogöra för sjuksköterskors erfarenhet av att vårda patienter i livets slutskede enligt Liverpool Care Pathway (LCP). Metod: Litteraturstudien baseras på tio vetenskapliga artiklar med kvalitativ ansats. De vetenskapliga artiklarna söktes i databaserna CINAHL, PubMed och World of Science. Inklusionskriterier var att artiklarna skulle vara primärkällor, vara skrivna på svenska eller engelska samt publicerade mellan år 2003-2013. Ytterligare inklusionskriterier var att sjuksköterskorna skulle ha erfarenhet av LCP, samt att de vetenskapliga artiklarna erhöll medel eller hög poäng vid granskningen och var godkänd av en etisk kommitté. Studier från hela världen inkluderades. Huvudresultat: Ett flertal studier visade att LCP bidrog till ett ökat självförtroende och tydligare riktlinjer för den palliativa vården. Sjuksköterskorna upplevde en förbättrad symtomkontroll och förbättrad vård efter införandet av LCP. Sjuksköterskorna var positiva till dokumentationen i LCP och det framgick också att LCP hade förbättrat och underlättat kommunikationen med närstående. LCP erbjöd stöd och vägledning i vården men det framgick också att det fanns oklarheter vad beträffar diagnostiserande av en patient som döende. Slutsats: Syftet med litteraturstudien var att undersöka sjuksköterskors erfarenhet av att vårda patienter i livets slutskede enligt Liverpool Care Pathway. Det framgick att det fanns bristande kunskaper om palliativ vård, men att införandet av LCP gett sjuksköterskor stöd och vägledning samt förbättrat kunskapen om palliativ vård. En vårdplan som LCP kan vara ett stöd för sjuksköterskan i omvårdnaden av patienter inom palliativ vård, men en sådan vårdplan kan aldrig ersätta sjuksköterskans kliniska kompetens. Det är därför viktigt att sjuksköterskor erbjuds fortlöpande utbildning inom palliativ vård, samt att en vårdplan som LCP används utifrån ett kritiskt förhållningssätt.  

Spring 2013

Inside this Issue: Library Endowment Fund EstablishedActive/Life Member List for FriendsA Note From the ChairMembership Form

Fluidez nos mundos virtuais: a participação nas comunidades virtuais do Second Life como forma de potencializar a experiência de consumo

Incrementar o conhecimento sobre o que contribui efetivamente para que ocorram interações bem sucedidas entre websites e os consumidores online, mais especificamente no mercado crescente dos mundos virtuais, é um assunto relevante para os pesquisadores e profissionais de administração de empresas. Vivemos em uma nova etapa da cultura do consumo, onde a experiência de consumo ganha relevância. Os jogos online, ambientados em mundos virtuais, são ilustrações muito apropriadas para representar a emergência do Marketing de Experiência, característico desta etapa. Os mundos virtuais, como o Second Life, podem ser classificados como “mundos de experiência”, e uma das suas principais características é a existência de comunidades virtuais. A interação entre usuários e o relacionamento social é fundamental para o enriquecimento da experiência de consumo nos mundos virtuais. A teoria da fluidez é um dos constructos mais utilizados para entender o comportamento do consumidor na internet e uma das formas de definir a natureza de experiências de consumo na internet. A utilização deste modelo (que vem sendo utilizado e aprimorado nos últimos 14 anos) é aconselhada para definir e medir a experiência de consumo na internet. A participação em comunidades virtuais pode ser um dos fatores que enriquecem a experiência de consumo nos mundos virtuais, percebida pela fluidez. O objetivo desta dissertação é entender se a participação em comunidades virtuais potencializa a experiência de consumo em mundos virtuais sociais, em especial no Second Life, tomando como base o conceito da fluidez. O objeto de estudo foram as comunidades virtuais do Second Life, durante o período da pesquisa que ocorreu entre o final de julho e o início de novembro de 2010. Para fazer a pesquisa de campo, empírica e exploratória, foi utilizada a metodologia da netnografia (etnografia virtual), descritiva por definição, como forma de atingir o objetivo proposto. Netnografia é a rigorosa e sistemática adaptação da etnografia especificamente alterada para as contingências do comportamento e interação online, isto é, ao estudo das comunidades virtuais. As atividades de pesquisa foram realizadas com observação participativa, isto é, com a participação, pelo pesquisador, no cotidiano do mundo virtual Second Life, que vivenciou, como um novato, a experiência de consumo em si. A dissertação aqui apresentada é o resultado do engajamento do pesquisador em uma imersão nas comunidades virtuais do Second Life. Foi concluído que experiência de consumo nos mundos virtuais é enriquecida pela participação em comunidades virtuais. A fluidez – percebida pela telepresença (imersão), perda de noção de tempo, envolvimento, prazer e diversão – é uma sensação que pode ser considerada típica e freqüente dos mundos virtuais e potencializada pela participação em comunidades virtuais. A participação em comunidades virtuais permite que os usuários vivenciem uma experiência rica, que seja ativa, responsiva, interativa e participativa, o que potencializa a experiência de consumo nos mundos virtuais.

Tourism for whom?: Different paths to development and alternative experiments in Brazil

The tourism policies pursued by the Brazilian government since the 1990s have not produced the benefits that were expected from mass tourism. The example of two very successful cases of community-based tourism, stressing paths rooted in a development model that is fair and environmentally responsible, shows that tourism development can improve the quality of life in communities that receive an influx of tourists provided that the local community is taken into account and the planning and implementation of such development focus on creating opportunities and benefits for its members. © 2008 Latin American Perpectives.

Mary Eva Hite Papers - Accession 187

The Mary Eva Hite Papers consists of correspondence, speeches, newspaper clippings, family history data, photographs, awards, scrapbooks, and other records relating to Mary Eva Hite’s career as an educator and prominent South Carolina public servant. The photograph file provides a visual record of South Carolina elementary school life in the first half of the twentieth century. Correspondence relates to Dr. Hite’s many career activities, including her 1970 correspondence highlighting her work promoting the welfare of senior citizens. The speeches focus on her work with the aged, her travels abroad, and acceptances for awards presented to her by educational and civic organizations. Newspaper clippings provide information concerning awards presented to Dr. Hite and chronicle the advances in education made by the state of South Carolina. Scrapbooks relate to college friends and Dr. Hite’s work with Delta Kappa Gamma. There are also records relating to teacher retirement in South Carolina.

James Pinckney Kinard Papers - Accession 8

The James Pinckney Kinard Papers consist of family history charts of the Kinard family and related Kuhn and Summer families, and a Kinard family history, personal correspondence including letters to and from his wife Lee Wicker Kinard (1873-1963), their daughter Nelle Kinard, and other family members, business correspondence, financial papers, literary manuscripts, scrapbooks, and photographs pertaining to Kinard’s student days at the Citadel, his personal and family affairs, his teaching career, his presidency of Winthrop, and his efforts to get his literary manuscripts published. This collection consists primarily of correspondence and offers an informative insight into the personal lives and family affairs of Dr. Kinard and his wife, Mrs. Lee Wicker Kinard. The correspondence generally deals with Dr. Kinard’s struggle against the South Carolina legislature’s cuts in educational appropriations for Winthrop during the Depression; and his varied activities on behalf of Winthrop as President Emeritus. The collection also includes several unpublished manuscripts ranging from his student days at the Citadel to his later life. Areas of research would perhaps include, among others, biographical information on Dr. Kinard and social history during the Depression.

Thomas Belue Collection - Accession 35 - M11 (21)

The Thomas Belue Collection consists of the diary of Thomas Belue of Union County, South Carolina. He enrolled as a private in the Confederate Army in Co. F, Captain C.W. Boyd’s , 15th SCV. The diary covers August, 1861 to September, 1863, and May 1864. Belue describes battles fought in South Carolina, Georgia,Tennessee, and Virginia, mileage covered, camp life and events that occurred during his time in the army. The collection also includes biographical information, genealogical information, a partial transcript of the diary, and copies of Belue’s military records. In addition there is a tintype in a case of Belue in his uniform, two copies of the tintype, and photographs of his gravestone at Gilead Baptist Church Cemetery in Union County, South Carolina.

Hutchison Family Papers - Accession 19

The Hutchison Family Papers consist of diaries, journals, speeches, correspondence, genealogical material and financial papers, concerning the personal and business affairs of a Rock Hill family. Subjects include post-colonial life in the Carolinas, the antebellum plantation system in South Carolina, post-Civil War cotton farming, especially the Rock Hill Cotton Mill, and Rock Hill during World War I. There is also material concerning relations and negotiations with the Catawba Indians by David Hutchison who was one of several commissioners designated by the South Carolina legislature to investigate Catawba land claims and leasing practices; and historical sketches of Glencairn Garden, the White House and the Oakland Avenue Presbyterian Church, all located in Rock Hill, South Carolina. There are also included in the “General Correspondence and Related Papers” series such records as: last will and testament, inventory lists, certificates of indentured servants, legislative acts, (eg. 1840 Treaty with the Catawba Indians) and other similar documents. Correspondents include Jude Grimke, A.E. Hutchison, David Hutchison, Hiram Hutchison, James Moore, John N. Morehead and Thomas Spratt.

Bessie Harper Radio Talk Records - Accession 26 - M8 (18)

The Bessie Harper Radio Talk records consist of a draft of a radio talk on "Family Finance" that was broadcast over WIS, Columbia, South Carolina on Monday, January 25th, 1932. Bessie Harper served as chairman of the American Home Department of the South Carolina Federation of Women's Club (SCFWC). The aim of the talk is to educate families how to budget their finances and to plan their expenses which was particularly important when this talk was given in 1932 during the Great Depression. This talk offers a glimpse into families' attempts to cope with the new economic reality of life during the Great Depression.