Resumo UCHÔA-FIGUEIREDO, L. R. O impacto da doença na vida cotidiana dos cuidadores de crianças com epilepsia de dificil controle. 2009. 260f. Tese (Doutorado) Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto, Universidade de São Paulo, São Paulo, 2009. A notícia de que o filho tem uma doença crônica remete os pais a uma crise em relação às expectativas decorrentes do desejo do filho idealizado. A família sofre pela incerteza da evolução da doença e suas possíveis consequências. A mãe, comumente, torna-se a cuidadora principal, ajudando a suprir necessidades, apresentando uma vida ocupacional deficitária, pois despende tempo, energia física e emocional, sofrendo perdas, sobrecarga de atividades e comprometendo a sua qualidade de vida. O objetivo desta pesquisa foi conhecer as mudanças que ocorrem na vida cotidiana do cuidador primário de pacientes, com diagnóstico de Epilepsia de Difícil Controle Infantil associado à encefalopatia crônica não evolutiva, avaliar a qualidade de vida e a sobrecarga em função da situação de adoecimento e verificar a relação desta sobrecarga emocional com a percepção dos cuidadores, sobre sua qualidade de vida. Avaliaram-se 50 cuidadores de crianças entre 7 e 12 anos, de ambos os sexos, com diagnóstico confirmado há cinco anos, e que estavam nesta função há pelo menos dois anos. A pesquisa foi aprovada pelo Comitê de Ética em Pesquisa Envolvendo Seres Humanos do HCFMRP e foi realizada no Serviço de Epilepsia Infantil do mesmo hospital. Foram utilizados: prontuários médicos das crianças, entrevista semi-estruturada enfocando o adoecimento, o cuidar e a vida cotidiana, os questionários de sobrecarga, Caregiver Burden Scale e de Qualidade de Vida, WHOQOL-bref. Os dados obtidos na entrevista foram analisados segundo o Sistema Quantitativo Interpretativo. Os dados do WHOQOL-bref e da Caregiver Burden Scale foram submetidos à análise estatística, de acordo com as normas do instrumento. Posteriormente, através da técnica dos quadrantes e da análise de coeficiente não paramétrica de Spearman, os dados foram correlacionados, no sentido de verificar possíveis relações entre aspectos da vida cotidiana, sobrecarga e percepção, por parte dos cuidadores, de sua qualidade de vida. Os resultados possibilitaram conhecer que houve mudança, diminuição do convívio social, alteração na vida profissional e estresse na vida do cuidador em decorrência do ato de cuidar. Em relação à qualidade de vida, pôde-se constatar que o domínio meio ambiente apresentou maior satisfação, enquanto que o menor índice ficou com as relações sociais, indicando assim a importância da rede de apoio social para o cuidador. A variável tempo de cuidado indicou que, quanto maior este for, maior a satisfação com relação ao bem-estar psicológico, meio ambiente e relações sociais. Identificaram-se dois tipos de sobrecarga, a velada e a declarada. Conclui-se que o impacto do adoecimento da criança interfere diretamente na vida cotidiana e nas relações dos cuidadores, assim como na qualidade de vida, porém, percebe-se que recursos estruturais e emocionais contribuem para minimizar os efeitos negativos sobre os cuidadores. Neste sentido ressalta-se a importância da equipe multidisciplinar oferecendo amparo informativo, técnico, troca de experiência e suporte aos cuidadores. / UCHÔA-FIGUEIREDO, L. R. Disease impact on the daily lives of caretakers of children with Difficult to Control Epilepsy. 2009. 260p. Thesis (PhD) Faculty of Philosophy, Science and Humanities of Ribeirao Preto, University of Sao Paulo, São Paulo, 2009. Acknowledging that a child has a chronic disease throws parents into a crisis related to expectations of a desired idealized descendant. The family is uncertain about disease evolution and possible consequences. However, it is the mother, who as a rule, becomes the main caretaker, helping to supply all necessities but showing a occupational life full of short-comings caused by spent time and physical and emotional energy. Her quality of life is further compromised by the suffered losses and work burden. This study aimed to investigate changes in the daily life of primary caretakers of patients diagnosed with Difficult to Control Child Epilepsy associated to non-evolutive chronic encephalopathy , and to evaluate effects of the overload as a function of disease onset on the quality of life. Perception by caretakers of disturbances in their own quality of life by the emotional burden was also verified. The fifty caretakers evaluated were taking care, for at least two years, of children 7 to 12 years old, from both sexes and with a confirmed diagnosis of five years. The study was approved by the Ethics Committee on Research with Human Beings of the University Hospital, Faculty of Medicine of Ribeirao Preto, University of Sao Paulo (HCFMRP) and was conducted at the Child Epilepsy Service of the same Hospital. Data were obtained through the children medical records, half-structured interviews addressing onset of the disease and daily care, and completion of the overload questionnaires ,Caregiver Burden Scale and Quality of Life, WHOQOL-bref. Data from interviews were analyzed by the Interpretation Quantitative System and the ones from WHOQOL-bref and Caregiver Burden Scale submitted to statistical analysis according to the rules of the instruments. Using the quadrant technique and analysis of the non-parametric Spearman coefficient, the data were further correlated to verify the existence of a relationship between aspects of burdened daily life and perception of their quality of life by caretakers. Results showed that the act of care did produce changes in the life of the caretaker, characterized by decreased socializing , disturbed professional life and stress . Considering quality of life, environmental factors were more satisfying than the ones of social relations, emphasizing the importance of social support in the life of a caretaker. As to the variable related to care duration, the longer it lasted the higher satisfaction in psychological well being, environment and social interchange were achieved . Two types of burdens were identified, one concealed and one declared. It is concluded that onset of disease in children does directly interfere in the daily life and relationships of caretakers, thus in their quality of life. However, by showing the contribution of structural and emotional resources to minimize the negative effects on caretakers, the importance of supportive information, techniques and exchange of experiences provided by a multi-professional team is also emphasized.

One of the most challenging tasks for many early childhood providers is how to support families who are facing tough, difficult issues like death of a parent, PTSD, abuse, and neglect. Not only do these issues impact the family’s overall functioning and well being and the quality of parents’ interactions with their young children but they also affect the relationship between the family and the early childhood providers (e.g., missed appointments and adversarial interactions). Dr. Carol Trivette will cap her yearlong webinar series sharing resources and discussing evidence-based practices that providers can implement when they are working with military families in particular, who are facing difficult situations. Participants are encouraged to engage and share challenges, resources, and successes they have experienced working with families of young children with disabilities.

Join the Military Families Learning Network Early Intervention team on Wednesday, December 14 from 12:30 pm - 1:30 pm ET for an interactive discussion related to the webinar Strategies to Support Families Experiencing Difficult Circumstances held on December 8. We want to hear your thoughts, opinions, and experiences related to interactions you have had with families of young children with disabilities and how those interactions strengthen the family’s ability to support their child’s learning. You can share with us verbally** or via the chat pod! (***login using a mic-enabled headset ten minutes before the session begins) Not able to attend the related webinar on December 8? No worries! We would still love to hear from you! And if you want, you can go to the archived webinar (posted by December 10) and listen to it before the Lunch & Learn. Come share your expertise and learn from others during this interactive forum. The cover image by StockSnap for this webinar is licensed CC0 Public Domain.

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Bakgrund: Specialistsjuksköterskor ska kunna identifiera och hantera ofri luftväg utifrån kunskap och fastställda riktlinjer inom den prehospitala vården. Att kunna identifiera svårigheter kan vara livräddande för en kritiskt sjuk eller skadad patient. Sverige är en av få länder i världen som bemannar ambulansen med minst en sjuksköterska, och som därtill utbildar sjuksköterskor till specialister. Specialistsjuksköterskor som jobbar prehospitalt skiljer sig i mängd erfarenhet och kunskap om prehospital vård. Syfte: Syftet med studien var att beskriva vilka faktorer som försvårar specialistsjuksköterskors luftvägshantering prehospitalt. Metod: Kvantitativ tvärsnittsstudie med enkäter samt fritextsvar. Deltagarna var specialistsjuksköterskor (n=37) vilka hade haft svårt och/eller misslyckats skapa en fri luftväg under senaste året. Det kvantitativa resultatet analyserades med student–t test, chi-två test samt Fishers Exakta test och det kvalitativa resultatet analyserades med kvalitativ innehållsanalys. Resultat: De faktorer som identifierades var Svårigheter relaterat till hjälpmedel, Svårigheter relaterat till patient samt Utveckling och utbildning. Resultatet visade en signifikant skillnad i hur trygga specialistsjuksköterskor inom olika inriktningar upplever sig vara vid hanteringen av de olika hjälpmedlen och en signifikant variation mellan antal yrkesverksamma år. Anestesisjuksköterskorna skattade sig högst och hade längst erfarenhet. Ambulanssjuksköterskorna och anestesisjuksköterskorna upplevde att deras utbildning hade hjälpt dem i deras hantering av svår luftväg, men ansåg ändå att mer utbildning och årlig repetition rörande luftvägshanteringen är nödvändig. Slutsats: Studiens resultat tyder på att teoretisk kunskap tillsammans med reell kompetens har betydelse för adekvat vård vid luftvägshantering och därmed kan öka patientsäkerheten. Vidare att specialistsjuksköterskorna önskar återkommande repetitionsutbildning i luftvägshantering via arbetsgivaren. Slutligen indikerar denna studies resultat ett behov av att se över de olika akutspecialistutbildningarna verksamma inom ambulanssjukvården för att luftvägsutbildningen skall bli mer jämställd.

I detta projekt behandlas ämnet misslyckande i relation till mitt framförande av stycket Failing: a very difficult piece for double bass, skrivet av Tom Johnson år 1975. Stycket består av musik för solokontrabas som även har en textrad som ska läsas samtidigt som musiken spelas. Detta med syftet att framföraren ska misslyckas med sitt framträdande. Stycket Failing sätter praxis för att spela musik på sin spets, då det blir oklart vad vi egentligen är ute efter i spelandet. I denna uppsats gör jag ett försök att reda ut hur musikaliska misslyckanden fungerar, samt hur min inställning till misslyckanden kan påverka mitt spelande. Detta sker genom reflektion och begreppsliga resonemang, med vissa referenser till litteratur inom psykologin. Slutsatsen är att jag så länge jag gör ett kvalificerat försök att spela Failing, så kan jag inte misslyckas med mitt framträdande. Detta synsätt leder till minskad prestationsångest vilket kan ge en förhöjd publikupplevelse. Det kan finnas värde i att applicera de begrepp jag kommit fram till på framtida framträdanden, eller fortsätta projektet att skapa tydliga begrepp kring musikaliska framträdanden. / <p><strong>Konsertprogram</strong></p><p>J.S. Bach: <em>Allemande</em> ur Cellosvit nr. 3</p><p>A. Desenclos: <em>Aria</em> ur Aria et Rondo</p><p>S. Koussevitzky: Konsert för kontrabas, Op. 3</p><p>T. Johnson: <em>Failing: a very difficult piece for double bass</em><em></em></p><p><strong>Medverkande</strong></p><p>Joel Hedtjärn, solokontrabas</p><p>Katarina Ström-Harg, piano</p>

Determining auditory functioning in difficult-to-test populations such as cerebral palsy (CP) remains a challenge in paediatric audiology. The auditory brainstem response (ABR) is favoured as the procedure to assess auditory functioning in difficult-to-test populations such as CP. The CP population, however, offers unique challenges for the ABR procedure due to the presence of involuntary muscular movements that may compromise the signal-to-noise ratio (SNR) of the ABR. Conventional ABR technology attempts to improve the SNR by the modification of acquisition parameters e.g. adjusting the low cut filter or implementing stricter artifact rejection criteria. However, such modifications may compromise the waveform morphology of the ABR. Furthermore, sedation or general anesthesia can also be used to improve the SNR by reducing excessive muscular movements. The CP population, however, displays a high risk for developing upper airway obstruction when being sedated or anesthetized. Thus, the feasibility and reliability of the conventional ABR may be compromised when being employed in the CP population. In recent years a novel ABR system, the Vivosonic Integrity (VS) ABR has become clinically available. The device incorporates features such as pre-amplification of the ABR signal, Kalman filtering and wireless recording. These features promise to address the limitations of conventional ABR technology to obtain a reliable recording in the midst of excessive myogenic artifact. The aim of this study was therefore to evaluate the clinical utility of the VS system when assessing a sample of children with CP without the use of sedation. The clinical utility of the VS ABR system was determined by comparing its success rates, the threshold correspondence to behavioural pure tone (PT) thresholds and recording time to a conventional ABR system when using click and 0.5 kHz TB stimuli. A cross-sectional within-subject comparison research design was selected in order to compare thresholds obtained with different procedures. The experimental part of this study was represented by the within-subject control condition where the VS ABR system and the conventional ABR system were simultaneously conducted in each subject. This unique setup was important in the research as equivalent test conditions in terms of EEG and environmental conditions had to be ensured for both ABR systems. 15 CP subjects between the ages of 12 and 18 years were included in the project. A diagnostic audiological test battery including immittance, distortion product otoacoustic emissions and behavioural audiometry was conducted on each subject prior the administration of the ABR procedures. The variability of the audiological test battery results – between the subjects and when compared to previous research – emphasized the heterogeneity of the CP population. Furthermore, more than half of the research sample (53%; n=15) responded inconsistently to behavioural pure tone (PT) stimuli. It was suggested that the severity of physical impairments as well as additional impairments such as mental retardation might have influenced the consistency of the subjects’ responses during behavioural PT audiometry. The ABR results indicated that there were no significant differences with regards to threshold correspondence and recording time between the two ABR systems when using click and 0.5 kHz TB stimuli (p>0.05). With regards to the success rates, the VS system was successful in more cases than the conventional ABR system using click and 0.5 kHz TB stimuli. Although results also showed no statistically significant value for click p=.1121) and 0.5 kHz TB stimuli p=.1648), there was a tendency towards the 95% confidence level in both cases suggesting that the VS ABR system may produce a statistically significant success rate for click as well as for 0.5 kHz TB stimuli, provided a larger sample is tested. The research indicated that, since the VS ABR system was more successful across a wider range of subjects during click-evoked and 0.5 kHz TB recordings, it may increase the clinical usefulness of the ABR especially in terms of hearing screening in the CP population. The research suggested that excessive muscular movements during the recordings influenced not only the VS ABR’s, but also the conventional ABR’s threshold correspondences to PT thresholds as well as the recording time of the measurements. Therefore it may still be necessary to use a light sedative in some CP patients to reduce excessive myogenic interference despite the possible advantages of the VS ABR system. / Dissertation (MCommunication Pathology)--University of Pretoria, 2010. / Speech-Language Pathology and Audiology / unrestricted

What values does a state notable building express when it not only represents prosperity values but also carries burdensome memories from people's lives? In what ways does the preservation of a former madhouse/mental hospital affect our understanding of the field of mental illness? This essay intends to research a former mental hospital, located in the city of Vadstena in Sweden, which today operates as a hospital museum. In this study the old mental hospital has been defined as a difficult cultural heritage. Through an architectural analysis of the building together with literature studies from previous work within cultural heritage the study aims to understand how the site today contributes and affects our understanding of mental illness and care. By examining our past from a distinctive perspective the study shows how Vadstena Hospital Museum today plays a significant role in how the psychiatric historical representation is treated and experienced today. Through difficult and complex cultural heritage humans' less desirable actions and events have the opportunity to be seen, heard, felt and discussed from a different perspective.

(in English): Vítová Tereza. Gypsy children and youth in difficult position in Mladá Boleslav. Prague, 20014. 91 pages Extended essay. Charles University in Prague, Department of social work. Head of essay: Jaroslava Šťastná Extended essay deals with gypsy children and youth in difficult life position in Mladá Boleslav. Theoretical part of essay is about history of gypsy nation, their social elemination, racism and discrimination, gypsy education in Czech republic, their adoption and about Gypsies in Mladá Boleslav. Target of empirical part of this essay was found out in which difficult life position gypsy children and youth are and if services of organizations in Mladá Boleslav dealing with this problems are sufficient for them. The essay can be helpful for workers who work with Gypsies and factual arrangement offering services for this target group. Experimental investigation is made by qualitative researching stratégy. There are taking methods of analysis, synthesis, questionaraire and halfstructural dialogies of complementary analysis of documents.

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