Orientador: Regina Yu Shon Chun / Dissertação (mestrado profissional) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-19T05:44:05Z (GMT). No. of bitstreams: 1 Ostroschi_DanieleTheodoro_M.pdf: 3160737 bytes, checksum: b30411e7977a6954e8e3a105701e2652 (MD5) Previous issue date: 2011 / Resumo: Introdução: Diversos fatores como a desnutrição materna, a prematuridade extrema e síndromes diversas, dentre outros, podem acarretar alterações no desenvolvimento infantil. Mediante as alterações, a intervenção oportuna pode favorecer o progresso global dessas crianças com risco, considerando-se que essa atuação envolve a participação de familiares/cuidadores e de uma equipe interdisciplinar, dentre os quais o fonoaudiólogo. No Brasil, são poucos os protocolos padronizados para avaliação de linguagem. Nas áreas de terapia ocupacional e fisioterapia, um dos instrumentos utilizados para avaliação pediátrica de incapacidade é o PEDI - Pediatric Evaluation of Disability Inventory que se mostrou viável para investigação dos aspectos de comunicação e interação social das crianças de risco que compõem este estudo. Objetivos: Analisar a interação social e comunicação de crianças com alterações neuromotoras sob a ótica de familiares/cuidadores e do fonoaudiólogo e caracterizar o perfil das crianças e dos familiares/cuidadores. Sujeitos e Método: A pesquisa foi aprovada pelo CEP-FCM/UNICAMP e submetida à anuência da Instituição e dos sujeitos do estudo. Participaram 35 familiares/cuidadores de 38 crianças de 12 a 36 meses, com alteração neuromotora e fatores de risco para o desenvolvimento, atendidas no Programa de Estimulação Precoce da APAE de uma cidade de médio porte do interior de São Paulo e uma fonoaudióloga (terapeuta e pesquisadora). A coleta de dados foi feita por meio de três fontes: (i) estudo dos prontuários para caracterização dos perfis das crianças quanto à idade, sexo, diagnóstico e tempo de atendimento na Instituição; (ii) levantamento de informações com familiares/cuidadores para caracterização dos seus perfis quanto à idade, escolaridade e profissão e (iii) aplicação do PEDI, tendo sido utilizada a primeira parte desse instrumento, voltada as habilidades de função social, em que se incluem os aspectos de comunicação e de interação social. Os procedimentos de coleta de dados envolveram, com os familiares/cuidadores, o método de entrevista e com a profissional, o método de julgamento clínico. Foi realizada análise estatística descritiva, inferencial e fatorial dos dados em comparação aos valores de referência do PEDI. Resultados: Em relação à distribuição por diagnóstico das crianças, a paralisia cerebral apresentou maior freqüência. A maioria dosfamiliares/cuidadores são mães (88%) e uma parcela pequena, avós (6%) e pais (3%), com idade variando entre 19 e 45 anos, com predominância de ensino médio completo e de profissão relatada como sendo profissional do lar (67%). As respostas dos familiares/cuidadores demonstraram maior concordância na habilidade de comunicação (68%), seguida das habilidades de casa/comunidade (56%) e de interação social (53%). As respostas do PEDI evidenciam atraso no desenvolvimento nas habilidades de comunicação e interação social das crianças estudadas em relação aos valores desse instrumento tanto na ótica dos familiares/cuidadores quanto na do profissional/pesquisador. Conclusões: De modo geral, a maioria das crianças do estudo apresenta valores abaixo daqueles de referencia do PEDI, evidenciando atraso em habilidades de interação social e comunicação. Os resultados demonstram o PEDI como um instrumento útil e complementar à avaliação clínica, no caso fonoaudiológica. Oferece subsídios ao conhecimento das habilidades funcionais referentes à função social (comunicação e interação), que podem auxiliar a nortear o profissional, assim como a equipe, no delineamento de estratégias de intervenção, obtendo-se dados junto à família e aos profissionais envolvidos tendo em vista o favorecimento da linguagem e interação, e conseqüente, autonomia e qualidade de vida do da criança com risco para o desenvolvimento. Tal perspectiva evidencia as possibilidades do instrumento em uma abordagem multi ou interdisciplinar tendo em vista a atenção integral à saúde do grupo populacional estudado / Abstract: Introduction: Several factors such as maternal malnutrition, extreme prematurity, and various syndromes, among others, could cause changes in child development. In this case, timely intervention can promote the overall progress of these children at risk, considering that this action involves the participation of family / carers and a multidisciplinary team, of which the audiologist. In Brazil, there are few standardized protocols for assessment of language. In the areas of occupational and physical therapy, one of the instruments used for pediatric evaluation of disability is the PEDI - Pediatric Evaluation of Disability Inventory that proved viable for investigation of aspects of communication and social interaction of children at risk making up this study. Objectives: To analyze the social interaction and communication of children with neuromotor from the perspective of family / caregivers and the Speech and Language Pathologist and to characterize the profile of children and families / caregivers. Subjects and Methods: The study was approved by CEP-FCM/UNICAMP and submitted for approval at the institution of the study. Participated in 35 family members / caregivers of 38 children aged 12 to 36 months, with neuromotor and risk factors for the development, attended the Early Stimulation Programme of APAE of a midsize city in the interior of São Paulo and a Speech and Language Pathologist (therapist and researcher). Data collection was done through three sources: (i) study of medical records to characterize the profiles of children in age, sex, diagnosis and time of attendance at the institution, (ii) information gathering with family / caregivers to characterize their profiles as to age, education and occupation, and (iii) implementation of the PEDI, has been used the first part of this instrument, focused social function skills, which include aspects of communication and social interaction. The data collection procedures involved with the family / caregivers, the interview method and with the professional, clinical trial method. We performed descriptive statistics, inferential and factorial data compared to the reference values of the PEDI. Results: Regarding the distribution of diagnosis, children with cerebral palsy was more frequent. Most family members / caregivers were mothers (88%) and a small portion, grandparents (6%) and parents (3%), aged between 19 and 45 years, withpredominance of high school education and occupation as reported work from home (67%). The responses of family members / caregivers showed greater agreement on communication skills (68%), followed by the skills of home / community (56%) and social interaction (53%). The responses of the PEDI showed developmental delays in communication skills and social interaction of children studied in relation to the values of the instrument both in the perspective of family / caregivers and the professional / researcher. Conclusions: In general, the majority of children in the study presents reference values below those of the PEDI, showing delay in skills of social interaction and communication. The results demonstrate the PEDI as a useful and complementary to clinical evaluation, speech therapy in the case. Provides grants to the knowledge of functional skills related to social function (communication and interaction), which can help to guide the professional as well as the team, the design of intervention strategies, obtaining data from family and professionals involved, in light of language's and interaction's view and consequently, autonomy and quality of life of the child at risk for development. This perspective highlights the possibilities of the instrument in a multi-or interdisciplinary approach with a view to comprehensive health care for the population group studied / Mestrado / Mestre em Saúde, Interdisciplinaridade e Reabilitação

Communication with healthcare providers (HCP’s) at the end-of-life (EOL) is a crucial process that can make a difference in the quality of the EOL experience for patients and their families. Targeting EOL communication interventions between patients, their families, and HCP’s is better informed from an understanding of what family members perceive as good and bad communication. The purpose of this study was to explore experiences related to communication with HCP’s in central Massachusetts during EOL care. Data from the parent study (n = 373) included responses from an open ended question at the end of the survey. The larger, qualitative descriptive study, from the parent study, (n = 218 ) that examined the open ended question revealed communication as the overarching theme. A secondary analysis of this open ended survey data using qualitative content analysis was used to describe next of kin’s perspectives of communication with HCP’s during the decedents’ end-of-life experience (n = 171). Family members (children = 38.4% and spouse = 22.0%) comprised the majority of the sample. Decedents were mostly 80 or older (47.6%), died in an acute care setting of mostly cancer (33.0 %) and cardiovascular disease (32.3%). Accessing information, emerged as the overarching theme. Continuum of information, healthcare provider sensitivity, having the answers and raising awarenesswere revealed as subthemes. The majority of respondents reported good aspects versus bad aspects of communication at the EOL. The framework for a good death (Emanuel & Emanuel (1998) under-girded the study but was not supported as it relates to these findings. The framework was useful in capturing the multidimensional process that each patient and their family could experience during the EOL process. The findings from this study provide insight for HCP’s about which aspects of communication are helpful at the EOL. Continuing education of the health care team on these identified helpful communication aspects will provide better access for patients and families for a quality EOL experience.

Made available in DSpace on 2016-04-27T18:12:02Z (GMT). No. of bitstreams: 1 Raquel Regina Rodrigues Monteiro.pdf: 5431649 bytes, checksum: b17fc531591bad1b39855d05f6483254 (MD5) Previous issue date: 2013-08-29 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / caretakers of children with hearing loss that would foster their adherence to the use of HA and their understanding of the initial orientation regarding auditory and language abilities. The applicability of the use of such material with Public Hearing Health Care Service users was investigated. Method: The material development was based on the underlying principles observed in clinical appointments at Centro Audição na Criança, which subsidized the structure and content to be addressed. A version was made using the following steps: organization of a prototype, partnership with a graphic designer and virtual group discussion with the professionals involved. The applicability of the material was assessed by means of its use with parents and caretakers during the routine process of HA selection/adaptation, the early stages of therapy and follow up appointments with children with hearing loss. The subjects were: parents/ caretakers accompanying the patients, children whose HA would allow daily measures of use, and audiologists responsible for the therapy sessions with these subject children. For the analysis of the preliminary version of the material, the following steps were used: a script for registering applicability, measurements of average daily use of HA and interview guides for parents/ caretakers and audiologists. A brainstorming session with qualified professionals in the area of hearing loss was conducted to refine and collect ideas to inform the production of the final version of the illustrated material. Results: The preliminary version of the illustrated material was presented in A5 size booklet format with spiral binding. The booklet content addressed the following matters: HA handling and care, and orientation on hearing and oral language development. Participants of this study were: eight audiologists and 16 families, whose children s chronological age ranged between 6 (six) and 53 (fifty-three) months. The communication strategy of the contents was an interactive and pictographic one. As for adherence, many factors interfered in daily average use of HA. As for the general evaluation of the material, all parents/ caretakers considered it good and fifteen of them (93,75%) used it at home. All audiologists reported that the material addressed important issues of the early stages of HA adaptation and supported families and audiologists during the development process. The most frequently treated subjects were: adherence to use of HA (45%) and HA care (32%). The final version was prepared taking into account comments from parents, audiologists/ speech therapists who applied the preliminary version of the illustrated material and brainstorming results. Conclusion: The material was used at home by families and seemed to contribute to family involvement, since it expanded its influence to beyond the person accompanying the child to therapy sessions. The audiologists of the Public Hearing Health Care Service demonstrated good acceptance to the material because it has guided the rehabilitation process and was regarded as support both for the family and therapist. Adherence to HA use was heterogeneous among subjects and suffered interference from several factors during the HA process of adaptation. The use of the material can be considered as a facilitator in the communication process between families and therapist / Objetivo: desenvolver e avaliar um material ilustrado para pais e responsáveis de crianças com deficiência auditiva que facilitasse a adesão ao uso do AASI e a compreensão das orientações iniciais quanto as habilidades auditivas e de linguagem. Investigou-se sua aplicabilidade em usuários do SUS. Método: Para o desenvolvimento do material realizou-se um levantamento das premissas observadas nos atendimentos feitos no CeAC que subsidiaram a estrutura e conteúdo a serem abordados. Foi confeccionada uma versão por meio das seguintes etapas: organização de um protótipo, parceria com designer gráfico e discussão em grupo virtual com os profissionais envolvidos. A aplicabilidade do material foi avaliada a partir do uso com pais/responsáveis na rotina do processo de seleção/adaptação de AASI, etapas iniciais de terapia (ADAPTI) e dos retornos para acompanhamento de crianças com deficiência auditiva. Foram sujeitos: os pais/responsáveis que acompanhavam as crianças no fluxo do serviço, crianças cujos os AASI possibilitassem a medida diária de uso e fonoaudiólogos que realizassem as terapias das crianças que entraram como sujeito. Para análise da versão preliminar do material foram utilizados: roteiro de registro de aplicabilidade, medidas de uso médio diário dos AASI e roteiros de entrevista para responsáveis e fonoaudiólogos. Foi realizado um brainstorming com profissionais habilitados na área da deficiência auditiva para aperfeiçoar e coletar ideias para subsidiar a confecção da versão final do material ilustrado. Resultados: A versão preliminar do material ilustrado se apresentou em formato de livreto no tamanho A5, com encadernação espiral. O conteúdo abordou questões referentes: ao manejo, cuidados com o AASI e orientações quanto ao desenvolvimento da audição e linguagem oral. Participaram desta pesquisa oito fonoaudiólogos e 16 famílias, cuja idade cronológica das crianças variou entre seis e 53 meses. Seu conteúdo teve como estratégia de comunicação um modelo interativo e pictográfico. Quanto à adesão, muitos fatores interferiram na média diária do uso dos AASI. Quanto a avaliação geral do material, todos os pais/responsáveis analisaram como bom e quinze deles (93,75%) o utilizaram em casa. Todos os fonoaudiólogos justificaram que o material abordou assuntos importantes da fase inicial de adaptação dos AASI e sobre o desenvolvimento, apoiou a família e o profissional durante esse processo. Os assuntos mais tratados estiveram centrados na adesão ao uso (45%) e cuidados com os AASI (32%). A versão final foi confeccionada considerando as observações dos pais, fonoaudiólogos que aplicaram a versão preliminar do material ilustrado e os resultados do brainstorming. Conclusões: O material foi utilizado em casa pelas famílias e pareceu colaborar para o envolvimento familiar, já que ampliou sua influência para além da pessoa que acompanhava a criança as sessões de terapia. Os fonoaudiólogos de um serviço do SUS demonstraram boa aceitação ao material pois norteou o processo de reabilitação e foi considerado como apoio à família e ao terapeuta. A adesão ao uso do AASI foi muito heterogênea entre os sujeitos e sofreu interferência de diversos fatores durante o processo de adaptação dos AASI. A utilização do material pode ser considerado como um facilitador no processo de comunicação entre famílias e terapeuta

I Sverige insjuknar 250-300 barn varje år av cancer. De cancertyper som drabbar barn är vanligtvis inte de samma som vuxna utvecklar. Olika cancerformer kräver olika typer av behandling, dessa är cytostatika, operation samt strålbehandling. Sjuksköterskan skall kunna möta föräldrar och barn samt uppfatta deras lidande för att kunna tillfredställa behovet av en god omvårdnad. För föräldrarna upplevs barnets cancerdiagnos ofta som ett svårt lidande, som kan kännas helt outhärdligt. När ett barn är svårt sjukt i cancer innebär detta en långvarig kontakt med sjukvården för hela familjen. Det är en svår och stressfull situation för familjen och deras välbefinnande påverkas av vårdarens agerande.Syftet med studien är att beskriva föräldrarnas uppfattning av vad som är god vård i samband med behandling av det cancersjuka barnet på sjukhus. Metoden är en litteraturstudie där åtta kvalitativa artiklar analyseras enligt Evans (2003) metod.Resultatet presenteras utifrån fem teman som är: Anpassad information, Kontinuerlig vårdrelation, Emotionellt stöd, Familjens delaktighet i vården samt Lugn vårdmiljö.Det mest framträdande i resultatet är att information är grunden till att föräldrarna skall uppleva att deras barn får en god vård. En adekvat given information med lyhördhet inför den enskilde förälderns behov och önskemål resulterar i en mer tillfredställd förälder. / Program: Fristående kurs

<p>Studiens syfte var att undersöka sjuksköterskors upplevelser av att ge stöd till anhöriga till patienter inom palliativ hemsjukvård.</p><p>Designen var deskriptiv med en kvalitativ ansats. Informanterna var strategiskt utvalda och bestod av fem sjuksköterskor som arbetade i ett palliativt hemsjukvårdsteam i Upplands län. Bandinspelade personliga intervjuer analyserades med en kvalitativ innehållsanalys.</p><p>Sjuksköterskorna upplevde att deras arbete kändes meningsfullt och utvecklande. Att arbeta i team var en mycket positiv aspekt. De svårigheter som framkom handlade om att anpassa sig efter olika situationer. Sjuksköterskorna gav stöd till anhöriga främst genom att kommunicera och samtala, samt förmedla trygghet. Det var viktigt att även både verbalt och praktiskt visa anhöriga att det fanns tid även för detta.</p><p>Eftersom det blir allt vanligare med palliativ vård i hemmet och den inte kan ske utan de anhörigas insats är det mycket viktigt att utveckla och optimera sjuksköterskans stöd till dem. Denna studie kan ge en insikt i de problem som finns i anhörigstödet, men även ge en insikt om de organisatoriska och personella insatser som fungerar.</p> / <p>The aim of this study was to investigate nurses' experiences in supporting next of kin to patients in palliative home care.</p><p>The design was descriptive with a qualitative approach. The informants were strategically selected and consisted of five nurses, working in a palliative home care team in Uppland, in Sweden. Tape-recorded personal interviews were analysed with a qualitative content analysis.</p><p>The nurses experienced that their work felt meaningful and developing. To work in a team was a very positive aspect. Difficulties that appeard involved adjusting to different situations. The nurses supported next of kin mainly by communicating and conversing, and mediating safety. It was important to as well both verbally and practically show next of kin that there was also time for this.</p><p>Since palliative care in the home is getting more common, and since it cannot happen without the effort of next of kin, it is very important to develop and optimize the nurses' support to them. This studie can give insight in the problems that exist in this support, but also give insight about the organizational and personal achievements that work.</p>

Studiens syfte var att undersöka sjuksköterskors upplevelser av att ge stöd till anhöriga till patienter inom palliativ hemsjukvård. Designen var deskriptiv med en kvalitativ ansats. Informanterna var strategiskt utvalda och bestod av fem sjuksköterskor som arbetade i ett palliativt hemsjukvårdsteam i Upplands län. Bandinspelade personliga intervjuer analyserades med en kvalitativ innehållsanalys. Sjuksköterskorna upplevde att deras arbete kändes meningsfullt och utvecklande. Att arbeta i team var en mycket positiv aspekt. De svårigheter som framkom handlade om att anpassa sig efter olika situationer. Sjuksköterskorna gav stöd till anhöriga främst genom att kommunicera och samtala, samt förmedla trygghet. Det var viktigt att även både verbalt och praktiskt visa anhöriga att det fanns tid även för detta. Eftersom det blir allt vanligare med palliativ vård i hemmet och den inte kan ske utan de anhörigas insats är det mycket viktigt att utveckla och optimera sjuksköterskans stöd till dem. Denna studie kan ge en insikt i de problem som finns i anhörigstödet, men även ge en insikt om de organisatoriska och personella insatser som fungerar. / The aim of this study was to investigate nurses' experiences in supporting next of kin to patients in palliative home care. The design was descriptive with a qualitative approach. The informants were strategically selected and consisted of five nurses, working in a palliative home care team in Uppland, in Sweden. Tape-recorded personal interviews were analysed with a qualitative content analysis. The nurses experienced that their work felt meaningful and developing. To work in a team was a very positive aspect. Difficulties that appeard involved adjusting to different situations. The nurses supported next of kin mainly by communicating and conversing, and mediating safety. It was important to as well both verbally and practically show next of kin that there was also time for this. Since palliative care in the home is getting more common, and since it cannot happen without the effort of next of kin, it is very important to develop and optimize the nurses' support to them. This studie can give insight in the problems that exist in this support, but also give insight about the organizational and personal achievements that work.

Diss. (sammanfattning) Umeå : Univ., 2005. / Härtill 4 uppsatser.

Diss. (sammanfattning) Stockholm : Karol. inst., 2002. / Härtill 5 uppsatser.

Diss. (sammanfattning) Linköping : Linköpings universitet, 2006. / Härtill 4 uppsatser.

Bakgrund: Anhöriga till en patient i livets slutskede befinner sig ofta i en mycket påfrestande situation. Situationen kan upplevas av anhöriga som främmande och oroande. Patienten och dess och anhöriga har rätt att bli bemötta av vårdpersonalen på ett professionellt sätt. Anhöriga är även en viktig del av patientens livsvärld som i samband med patientens sjukdom också lider. Anhörigas behov förbises ofta av vårdpersonalen eftersom fokuset ligger på patienten. Syfte: Syftet med denna litteraturöversikt var att skapa en sammanfattning om vad är anhörigas upplevelse av vårdpersonalens bemötande inom palliativ vården. Metod: Metoden är litteraturöversikt där tio vetenskapliga artiklar har granskats och analyserats. Artiklarna söktes i Cinahl Complete, Medline med full text samt PubMed. Resultat: Tre huvudteman identifierades. Den första Behov och förväntningarsom lyfter kommunikations betydelse samt anhörigas delaktighet i omvårdnaden. Den andra Erfarenheter inkluderar anhörigas positiva och negativa känslor samt förändringar i anhörigas liv. Den sista huvudtema Vårdpersonalens ansvar har i fokus det emotionella stödet samt bemötandet av anhöriga.  Sammanfattning: Resultatet visade att en tydlig kommunikation och stöd från vårdpersonalen hade en god effekt på hur anhöriga upplever bemötandet. Delaktigheten i omvårdnaden hade stor betydelse för anhöriga som oftast ville vara engagerade i alla åtgärder som görs. Stöd under den pågående palliativa vården såsom efter dödsfallet var det anhöriga upplevde som bristfällig. / Background: Relatives of a patient in the final stages of life are often in a very stressful situation. The situation can be perceived by relatives as foreign and disturbing. The patient and his or her relatives have the right to be treated by the care staff in a professional manner. Relatives are also an important part of the patient's lifeworld and in connection with the patients' disease they also suffer. Relatives' needs are often overlooked by healthcare professionals because the focus is on the patient. Aim: The purpose of this literature review was to create a summary of what relatives' experience of the care staff's treatment in palliative care. Method: The method is a literature review where ten scientific articles have been reviewed and analyzed. The articles were searched in Cinahl Complete, Medline with full text and PubMed. Results: Three main themes were identified. The first Needs and Expectations highlight the importance of communication and the relatives´ participation in nursing. The other Experiences include the positive and negative feelings of relatives and changes in the lives of relatives. The last main theme The Responsibility of the care staff focuses on the emotional support and the treatment of relatives. Conclusion: The results showed that a clear communication and support from the care staff had a good effect on how relatives experience the treatment. Participation in nursing was of great importance to relatives who most often wanted to be involved in all measures taken. Support during ongoing palliative care, such as after the death, was perceived by the relatives as deficient.