ABSTRACT  Background: The prevalence of diabetes is expected to rise all over the world, which puts an increases demand and strain on the current health care systems. Self-care is an important part of caring for patients with diabetes.  Objective: The purpose of this study was to describe nurses’ experiences and knowledge regarding assisted self-care of diabetic inpatients within medical care. Method:  This study used a qualitative approach with individual interviews. Ten nurses were involved in the interview process and an interview guide with open questions was used. Content analysis of the transcribed material was performed. Results: The nurses experienced their knowledge and understanding related to diabetic selfcare of patients to be varied. Newly diagnosed patients, patients with bad compliance and elderly patients were perceived as more difficult by the nurses involved. Participation in selfcare varied depending on patient compliance, patient ability and if the patient was invited to take part. Nurses knowledge related to diabetes and medicines varied, difficulties were due to lack of knowledge related to abnormal blood sugar levels and insulin doses, as well as being unable to communicate the appropriate information to the patient due to patient inability to comprehend the information. Another difficulty was the lack of time to keep up to date with the latest knowledge regarding diabetic medicines. Nurses wanted to give the patient the correct information and considered this crucial, as well as it being appreciated by the patients.  Conclusion: The nurses’ perception of their knowledge and experiences varied. An increased requirement of knowledge within diabetes and self-care was wanted. Nurses should feel confident when caring for patients with assisted self-care and be able to inform, support and encourage the patient to be involved in self-care. Continued training and guidance should therefore be provided to nurses working in the medical ward

Estudo descritivo transversal, cujo objetivo foi analisar a relação entre as atividades de autocuidado com o controle metabólico e os dados clínicos de pessoas com diabetes mellitus tipo 2. Foi desenvolvido em unidade ambulatorial de hospital de nível terciário de atenção à saúde. A amostra ficou constituída por 218 pessoas, e os dados foram coletados no período de junho de 2011 a junho de 2012, por meio do Questionário de Atividades de Autocuidado com o Diabetes. Destaca-se que 117 (53,67%) pessoas eram do sexo feminino, a média de idade foi de 60,72 (DP=8,27) anos, 156 (71,56%) viviam com companheiro, 111 (50,92%) eram aposentados ou pensionistas, média de escolaridade de 5,01 (DP=4,12) anos de estudo e média de renda familiar mensal de 1.806,10 (DP=1228,7) reais. O tempo médio de diagnóstico da doença foi 15,29 (DP= 8,09) anos; 131 (60,09%) pessoas eram obesas e 68 (31,19%) estavam com sobrepeso. Em relação à terapia medicamentosa, 144 (66,06%) pessoas estavam em terapia combinada de insulina e antidiabéticos orais; 194 (90,65%) apresentaram hemoglobina glicada >= 7% (média= 9,43%; DP=2,01). O uso de cigarro foi referido por 24 (11,01%) pessoas. O seguimento de uma dieta saudável apresentou média de 5,00 (DP=2,48) dias por semana; em relação à orientação alimentar que foi de 3,74 (DP=2,83) dias. Nos itens sobre dieta específica, encontrou-se o consumo de cinco ou mais porções de frutas e/ou vegetais, de alimentos ricos em gordura e de doces, e as médias foram, respectivamente, de 4,10 (DP=2,81), 3,95 (DP=2,72), 1,48 (DP=1,20). Para a prática de atividade física, a média foi de 2,44 (DP=2,72) dias, e a prática de exercício físico específico foi de 2,07 (DP=2,59) dias. Os itens referentes à avaliação do açúcar e do número de vezes recomendado foram, respectivamente, de 4, 50 (DP=2,79) dias e 3,32 (DP=3,05) dias. Na dimensão cuidado com os pés, o item com maior média diária foi secar os espaços entre os dedos dos pés, depois de lavá-los, com média de 6,21 (DP=2,16) dias. O uso de insulina apresentou média de 6,70 (DP=1,03) dias e para os comprimidos, a média foi de 6,65 (DP=1,38) dias. Em relação às atividades de autocuidado com a doença, os resultados indicaram que as pessoas apresentaram maiores valores para o tratamento medicamentoso do que para as atividades que necessitam de mudanças nos hábitos de vida. Para um p<0,05, observa-se que a idade correlacionou-se fraca e inversamente com a \"atividade física\" e com \"cuidado com os pés\". Esta última dimensão \"cuidado com os pés\" apresentou correlação fraca e direta com a escolaridade. Destaca-se, também, correlação de fraca magnitude e direta entre a dimensão \"monitorização da glicemia\" e tempo de diagnóstico do diabetes mellitus. Conhecer as atividades de autocuidado permite desenvolver intervenções de enfermagem que favorecem comportamentos fundamentais para o controle da doença e prevenção de suas complicações. Estudos de seguimento são sugeridos para ampliar as análises de relação entre as atividades de autocuidado e as variáveis clínicas e metabólicas / This is a sectional study that aimed to examine the relationship between self care activities, metabolic control and clinical data of people with type 2 diabetes mellitus. It was developed in the outpatient clinic of a tertiary hospital health care. The sample consisted of 218 people and the data was collected from June 2011 to June 2012, through the Self-Care Activities Questionnaire with Diabetes. In this study, 117 (53.67%) subjects were female, the average age was 60.72 (SD = 8.27) years, 156 (71.56%) lived with a partner, 111 (50, 92%) retirees or pensioners, average education was of 5.01 (SD = 4.12) years studied and average monthly family income of R$ 1806.10 (SD = R$ 1228.7). The average time to diagnosis was 15.29 (SD = 8.09) years, 131 (60.09%) subjects were obese and 68 (31.19%) overweight. In relation to drug therapy, 144 (66.06%) people were in combined therapy of insulin and oral antidiabetics; 194 (90.65%) had glycated hemoglobin >= 7% (mean = 9.43%, SD = 2.01). The cigarette use was reported by 24 (11.01%) people. The average of days of following a healthy diet was 5.00 (SD = 2.48) days for week, about guidance for diet, was 3.74 (SD = 2.83) days. In items about specific diet, it was found that the consumption of five or more kinds of fruits and / or vegetables, foods rich in fat and sweets, with averages respectively 4.10 (SD = 2.81), 3.95 (SD = 2.72) and 1.48 (SD = 1,20). For physical activity, the average was 2.44 (SD = 2.72) days and specific physical activity was 2.07 (SD = 2.59) days. The items regarding the evaluation of the sugar and the number of times recommended were respectively 4, 50 (SD = 2.79) and 3.32 days (SD = 3.05) days. Dimension in foot care, the item with the highest daily attendance was dry the spaces between the fingers, after washing its, with a mean of 6.21 (SD = 2.16) days. The use of insulin had a mean of 6.70 (SD = 1.03) days and the tablets, the average was 6.65 (SD = 1.38) days. In relation to self-care activities with the disease, the results indicated that people had higher values for drug treatment than for activities that require changes in lifestyle. For a p <0.05, it is observed that age correlated inversely and weak with \"physical activity\", and \"foot care\". This last dimension \"foot care\", presented weak and direct correlation with education. Also the weak and direct correlation between the dimension \"glucose monitoring\" and time of diagnosis of diabetes mellitus. Knowing the self care activities allows developing nursing interventions to promote behaviors critical to control of the disease and prevent its complications. Follow-up studies are suggested to extend the analysis of the relationship between self care and clinical and metabolic variables

Estudo descritivo transversal, cujo objetivo foi analisar a relação entre as atividades de autocuidado com o controle metabólico e os dados clínicos de pessoas com diabetes mellitus tipo 2. Foi desenvolvido em unidade ambulatorial de hospital de nível terciário de atenção à saúde. A amostra ficou constituída por 218 pessoas, e os dados foram coletados no período de junho de 2011 a junho de 2012, por meio do Questionário de Atividades de Autocuidado com o Diabetes. Destaca-se que 117 (53,67%) pessoas eram do sexo feminino, a média de idade foi de 60,72 (DP=8,27) anos, 156 (71,56%) viviam com companheiro, 111 (50,92%) eram aposentados ou pensionistas, média de escolaridade de 5,01 (DP=4,12) anos de estudo e média de renda familiar mensal de 1.806,10 (DP=1228,7) reais. O tempo médio de diagnóstico da doença foi 15,29 (DP= 8,09) anos; 131 (60,09%) pessoas eram obesas e 68 (31,19%) estavam com sobrepeso. Em relação à terapia medicamentosa, 144 (66,06%) pessoas estavam em terapia combinada de insulina e antidiabéticos orais; 194 (90,65%) apresentaram hemoglobina glicada >= 7% (média= 9,43%; DP=2,01). O uso de cigarro foi referido por 24 (11,01%) pessoas. O seguimento de uma dieta saudável apresentou média de 5,00 (DP=2,48) dias por semana; em relação à orientação alimentar que foi de 3,74 (DP=2,83) dias. Nos itens sobre dieta específica, encontrou-se o consumo de cinco ou mais porções de frutas e/ou vegetais, de alimentos ricos em gordura e de doces, e as médias foram, respectivamente, de 4,10 (DP=2,81), 3,95 (DP=2,72), 1,48 (DP=1,20). Para a prática de atividade física, a média foi de 2,44 (DP=2,72) dias, e a prática de exercício físico específico foi de 2,07 (DP=2,59) dias. Os itens referentes à avaliação do açúcar e do número de vezes recomendado foram, respectivamente, de 4, 50 (DP=2,79) dias e 3,32 (DP=3,05) dias. Na dimensão cuidado com os pés, o item com maior média diária foi secar os espaços entre os dedos dos pés, depois de lavá-los, com média de 6,21 (DP=2,16) dias. O uso de insulina apresentou média de 6,70 (DP=1,03) dias e para os comprimidos, a média foi de 6,65 (DP=1,38) dias. Em relação às atividades de autocuidado com a doença, os resultados indicaram que as pessoas apresentaram maiores valores para o tratamento medicamentoso do que para as atividades que necessitam de mudanças nos hábitos de vida. Para um p<0,05, observa-se que a idade correlacionou-se fraca e inversamente com a \"atividade física\" e com \"cuidado com os pés\". Esta última dimensão \"cuidado com os pés\" apresentou correlação fraca e direta com a escolaridade. Destaca-se, também, correlação de fraca magnitude e direta entre a dimensão \"monitorização da glicemia\" e tempo de diagnóstico do diabetes mellitus. Conhecer as atividades de autocuidado permite desenvolver intervenções de enfermagem que favorecem comportamentos fundamentais para o controle da doença e prevenção de suas complicações. Estudos de seguimento são sugeridos para ampliar as análises de relação entre as atividades de autocuidado e as variáveis clínicas e metabólicas / This is a sectional study that aimed to examine the relationship between self care activities, metabolic control and clinical data of people with type 2 diabetes mellitus. It was developed in the outpatient clinic of a tertiary hospital health care. The sample consisted of 218 people and the data was collected from June 2011 to June 2012, through the Self-Care Activities Questionnaire with Diabetes. In this study, 117 (53.67%) subjects were female, the average age was 60.72 (SD = 8.27) years, 156 (71.56%) lived with a partner, 111 (50, 92%) retirees or pensioners, average education was of 5.01 (SD = 4.12) years studied and average monthly family income of R$ 1806.10 (SD = R$ 1228.7). The average time to diagnosis was 15.29 (SD = 8.09) years, 131 (60.09%) subjects were obese and 68 (31.19%) overweight. In relation to drug therapy, 144 (66.06%) people were in combined therapy of insulin and oral antidiabetics; 194 (90.65%) had glycated hemoglobin >= 7% (mean = 9.43%, SD = 2.01). The cigarette use was reported by 24 (11.01%) people. The average of days of following a healthy diet was 5.00 (SD = 2.48) days for week, about guidance for diet, was 3.74 (SD = 2.83) days. In items about specific diet, it was found that the consumption of five or more kinds of fruits and / or vegetables, foods rich in fat and sweets, with averages respectively 4.10 (SD = 2.81), 3.95 (SD = 2.72) and 1.48 (SD = 1,20). For physical activity, the average was 2.44 (SD = 2.72) days and specific physical activity was 2.07 (SD = 2.59) days. The items regarding the evaluation of the sugar and the number of times recommended were respectively 4, 50 (SD = 2.79) and 3.32 days (SD = 3.05) days. Dimension in foot care, the item with the highest daily attendance was dry the spaces between the fingers, after washing its, with a mean of 6.21 (SD = 2.16) days. The use of insulin had a mean of 6.70 (SD = 1.03) days and the tablets, the average was 6.65 (SD = 1.38) days. In relation to self-care activities with the disease, the results indicated that people had higher values for drug treatment than for activities that require changes in lifestyle. For a p <0.05, it is observed that age correlated inversely and weak with \"physical activity\", and \"foot care\". This last dimension \"foot care\", presented weak and direct correlation with education. Also the weak and direct correlation between the dimension \"glucose monitoring\" and time of diagnosis of diabetes mellitus. Knowing the self care activities allows developing nursing interventions to promote behaviors critical to control of the disease and prevent its complications. Follow-up studies are suggested to extend the analysis of the relationship between self care and clinical and metabolic variables

Conselho Nacional de Desenvolvimento CientÃfico e TecnolÃgico / à importante avaliar a prÃtica do autocuidado de pacientes com insuficiÃncia cardÃaca (IC), visto que o cuidado pessoal à indispensÃvel para diminuiÃÃo das complicaÃÃes e reinternaÃÃes e melhoria da qualidade de vida. Este estudo teve como objetivos elaborar uma escala para avaliaÃÃo do autocuidado de pacientes com insuficiÃncia cardÃaca e realizar a validaÃÃo de conteÃdo da escala de avaliaÃÃo do autocuidado de pacientes com insuficiÃncia cardÃaca. Trata-se de um estudo do tipo metodolÃgico, cujo referencial teÃrico foi o Modelo PsicomÃtrico para construÃÃo de instrumentos de medida composto por trÃs procedimentos (teÃrico, empÃrico e analÃtico), sendo realizado o pÃlo teÃrico e seus seis passos. A primeira etapa da pesquisa envolveu o levantamento dos elementos que englobam as mÃltiplas facetas do construto âautocuidado de pacientes com insuficiÃncia cardÃacaâ por meio de uma revisÃo de literatura. Para tanto, procedeu-se a busca de artigos cientÃficos em periÃdicos cientÃficos nacionais e internacionais em bases de dados e livros acadÃmicos sobre IC e autocuidado nas bibliotecas das universidades nos meses de abril e maio de 2011. Foram selecionados 63 artigos, que atenderam aos critÃrios de inclusÃo, nas bases de dados SCOPUS, PUBMED, CINAHL, COCHRANE e LILACS apÃs o cruzamento dos descritores controlados autocuidado e insuficiÃncia cardÃaca e suas traduÃÃes em inglÃs e espanhol. Em relaÃÃo aos livros, selecionaram-se oito livros que atenderam aos critÃrios de inclusÃo estabelecidos. A leitura e sÃntese dos artigos e livros apontaram 28 prÃticas de autocuidado de pacientes com IC e orientaram a operacionalizaÃÃo da construÃÃo da escala, originando a primeira versÃo da Escala de AvaliaÃÃo do Autocuidado de Pacientes com InsuficiÃncia CardÃaca (EAAPIC). A coleta de dados com os juÃzes aconteceu nos meses de agosto, setembro e outubro de 2011, sendo utilizado um formulÃrio contendo dados referentes aos juÃzes e dados avaliativos da escala. O estudo respeitou os preceitos Ãticos e recebeu aprovaÃÃo do comità de Ãtica em pesquisa da Universidade Federal do Cearà sob protocolo de nÃmero 114/2011. A primeira versÃo do instrumento foi composta por 29 itens distribuÃdos em sete domÃnios, quais sejam: nutriÃÃo, eliminaÃÃo, atividade e repouso, percepÃÃo e cogniÃÃo, promoÃÃo da saÃde, tolerÃncia ao estresse e papÃis e relacionamentos. Cada item possuÃa cinco respostas possÃveis dispostas em escala de Likert, variando de 1 a 5, sendo um considerado pior autocuidado e cinco melhor autocuidado. Procedeu-se a anÃlise teÃrica da escala, submetendo-se à avaliaÃÃo de oito juÃzes considerados experts em insuficiÃncia cardÃaca. ApÃs os testes estatÃsticos (Ãndice de Validade de ConteÃdo â IVC, v de Cramer e coeficiente de correlaÃÃo intraclasses - ICC) e as alteraÃÃes decorrentes das sugestÃes dos juÃzes, obteve-se a segunda versÃo da escala formada por vinte itens distribuÃdos em seis domÃnios. O ICC da EAAPIC foi de 0,827 (p=0,001) indicando boa consistÃncia interna. Conclui-se, portanto, que foi possÃvel construir uma escala de avaliaÃÃo do autocuidado de pacientes com insuficiÃncia cardÃaca e que a mesma envolve e representa o conteÃdo do construto que pretende medir devido seu bom valor do coeficiente de correlaÃÃo intraclasses. / It is important to evaluate the practice of self-care of patients with heart failure (HF), as the personal care is essential to decrease complications and readmissions and improve the quality of life. This study aimed to develop a scale for evaluate self-care of patients with heart failure and perform content validation of self-care scale for evaluation of patients with heart failure. It is a methodological study, whose theoretical reference was the Psychometric model for construction of measuring instruments composed of three procedures (theoretical, empirical and analytical), beeing performed the theoretical pole and its six steps . The first stage of the research involved the investigation of the elements that comprise the multiple facets of the construct "self-care of patients with heart failure" through a literature review. For this, we proceeded to search for scientific articles in national journals and international databases and scholarly books about HF and self-care in the university libraries in the months of April and May 2011. We selected 63 articles that met criteria for inclusion in databases SCOPUS, PubMed, CINAHL, Cochrane Library and LILACS after the crossing of controlled descriptors self-care and heart failure and their translations into English and Spanish. Regarding the books, we selected eight books that met the inclusion criteria established. Reading and summaries of articles and books have been identified 28 practice of self-care of patients with HF guided the operationalization of the construction of the scale, resulting in the first version of the Scale of Evaluation of Self-Care of Patients with Heart Failure (EAAPIC). Data collection with the judges took place in August, September and October 2011, we used a form containing data regardings jugdes and evaluate data on the scale. The study complied with the ethical guidelines and was approved by research ethics committee of the Federal University of Cearà under protocol number 114/2011. The first version of the instrument comprised 29 items divided into seven areas, namely: nutrition, elimination, activity and rest, perception and cognition, health promotion, stress tolerance, and roles and relationships. And each item had five possible answers arranged in Likert scale ranging from 1 to 5, with 1 considered worse self- care and 5 the best self-care. There has been the theoretical analysis of the scale, submitting to the evaluation of eight judges considered experts in heart failure. After statistical tests (Index of Validity of Content - IVC and coefficient of intraclass correlation - ICC) and the changes resulting from the suggestions of the judges, we obtained the second version of the scale consisting of twenty items divided in six areas. ICC of EAAPIC was 0.827 (p= 0,001), indicating good internal consistency. We conclude, therefore, that it was possible to construct a evaluation scale of self-care of patients with heart failure and that it involves and represents the content of the construct to be measured due to its good value for coefficient of intraclass correlation.

African American men are disproportionately affected by type 2 diabetes and have a 3 times higher rate of 3 serious complications of diabetes, including blindness, amputations, and end-stage renal disease, compared to other groups. The purpose of this project was to address the gap-in-practice disparity that exists in care of African American men with diabetes by providing one-on-one self-care management education in an outpatient clinic setting. The behavior change theories that supported the project intervention were Orem's self-care theory and Bandura's self-efficacy theory. Employing a quasi-experimental design, 33 participants between the ages of 40 and 65 were divided into an intervention group (n = 18) and a comparison group (n = 15) by self-selection. Only participants in the intervention group received the diabetes self-care education program. Both groups completed pretest and the posttest questionnaires that collected demographic data and data from the Summary of Diabetes Self-Care Activities, the Diabetes Knowledge Test, and the Self-Efficacy for Diabetes tool. Statistically significant differences between the groups were found in the posttest scores of self-care activities, diabetes knowledge, and self-efficacy. The differences can most likely be attributed to the diabetes education intervention. This project demonstrated that diabetes self-care management education can be provided effectively in the clinic office setting, making diabetes education more available to and accessible for patients who need it most. Integrating diabetes self-care education into primary care providers' offices has the potential to address the gap-in-practice that exists for African American men with type 2 diabetes and contribute to social change by preventing disease progression.

Personer med hjärtsvikt behöver enligt nationella riktlinjer för hjärtsjukvård få individanpassad som är effektiv, jämlik, patientsäker, kunskapsbaserad och tillgänglig. De är i behov av information om behandling, symtom och förebyggande åtgärder. Syftet med studien var att undersöka vilka komponenter som sjuksköterskor vid en sjuksköterskebaserad hjärtsviktsmottagning kan använda för att bedriva evidensbaserad vård. I den systematiska litteraturstudien granskades 21 artiklar där två komponenter framkom, utbildning och e-hälsa, där utbildning var den viktigaste komponenten. Som stöd till komponenterna påvisades ett flertal redskap i artiklarna såsom telefonuppföljning, hembesök, grupputbildning, telemonitorering, dagbok, skriftlig information/bok och video/ dataprogram. När komponenterna och redskapen användes av sjuksköterskor sågs nyttan med hjärtsviktsmottagning med signifikant eller bättre resultat för egenvård, livskvalitet, kostnader, nyttjande av vård samt mortalitet. / People with heart failure should according to Swedish national guidelines for heart care get personalized care that is efficient, equitable, patient safety, knowledgeable and accessible. They should receive information about treatment, symptoms and prevention. The purpose of this study was to explore components that nurses at an office nursing heart failure clinic can use to conduct evidence-based care. This systematic literature study reviewed 21 articles in which two components emerged, education and e-support, where education was the most important component. To maintain the components, several tools were found in the articles, these were; telephone follow-up, home visits, group education, telemonitoring, diary, written information/book and video/computer programs. When the components and tools was used together by nurses at nursing office heart failure clinics, significantly or better results were found for self-care, quality of life, costs, utilization of care and mortality.

Unga vuxna typ 1 diabetiker i åldern 18-29 år har inte optimal diabetes-behandling. Insulin saknas och glukos kan inte transporteras till kroppens celler. Egenvård måste ske i form av insulintillförsel, regelbundna måltiderna och blodsockerkontroller. Behandlingsmålet är ett normalt liv och hindrande av långtidskomplikationer. Syftet med litteraturöversikten var att beskriva hinder och möjligheter av betydelse för egenvård hos unga vuxna med diabetes typ 1. Systematisk litteraturöversikt i tre olika databaser resulterade i elva vetenskapliga artiklar. Två kategorier framkom: Hinder och resurser för egenvård, vilka delades i subkategorierna vårdrelation vid transition, kommunikation vid transition, sociala relationer och patientens autonomi. Livet förändras i många avseenden i åldern 18-29 år. Det egna ansvarstagandet, autonomin och delaktigheten påverkas av bristande rutin, ostrukturerad livsstil, stress, dåliga vanor, felprioriteringar och bristande motivation. Patientens kontroll av sjukdom och egenvård är en viktig inre resurs som kan stärkas genom fortsatt utbildning, vilket resulterar i ökad delaktighet. Överföring mellan vårdgivare och tillgänglighet måste förbättras. Sjuksköterskans kunskap om samband mellan egenvårdsförmåga och motivationshöjande terapimetoder måste fördjupas och vidare forskning för att hitta åtgärder som främjar egenvården måste göras. / Young adult type 1 diabetics aged 18-29 do not have optimal diabetes treatment. Insulin is missing and glucose can not be transported to the body's cells. Self-care such as insulin administration, regular meals and bloodsugar controls must be done. The treatment goal is normal life and prevention of long-term complications. The purpose of the literature review was to describe obstacles and possibilities of self-care in young adults with type 1 diabetes. Systematic literature review in three different databases resulted in eleven scientific articles. Two categories emerged: Obstacles and resources for self-care, which were divided into subcategories care relationship at transition, communication at transition, social relations and patient autonomy. Life is changing in many respects between the ages of 18 and 29. Responsibility, autonomy and participation are affected by lack of routine, unstructured lifestyle, stress, bad habits, bad priorities and lack of motivation. The patient's control over disease and self-care is an important internal resource that can be strengthened through continuing education, resulting in increased participation. Transfers between healthcare providers and accessibility must be improved. Nursing knowledge about self-reliance and motivational therapy methods needs to be deepened and further research to find actions that promote selfesteem must be done.

A síndrome de Rett (SR) é um distúrbio neurológico progressivo de causa genética que afeta quase exclusivamente o sexo feminino. É causada por mutações, geralmente esporádicas, do gene MECP2, localizado no cromossomo X. Apresenta como características principais: estagnação no desenvolvimento neuropsicomotor, perda de comunicação, do contato visual, do interesse por pessoas e objetos e estereotipias manuais. Em conseqüência do grave comprometimento cognitivo e motor, as portadoras de SR têm muita dificuldade em realizar as tarefas do dia-a-dia. O objetivo desse trabalho foi avaliar as habilidades funcionais e averiguar as necessidades de assistência do cuidador, conforme determinadas pelo Inventário de Avaliação Pediátrica de Incapacidade (PEDI). Esse instrumento de avaliação, que possui 197 itens nas áreas de autocuidado, mobilidade e função social, foi aplicado em 64 portadoras de SR que preenchiam os critérios para a forma clássica da doença. Elas tinham idade entre 2 e 26 anos, com média de 10 anos. Entre as 73 atividades da área de autocuidado do PEDI, 52 (71,2%) não foram realizadas por qualquer criança; na área de mobilidade, entre as 59 atividades propostas, 8 (13,5%) não foram feitas pelas portadoras de SR; e finalmente na área de função social, nenhuma das 50 (76,9%) entre 65 atividades foi realizada. O desempenho médio ajustado em escala de 0 a 100 para a área de autocuidado foi de 8,9/100, variando de 0 a 26; para a de mobilidade, foi em média de 30,2/100, variando de 1,7 a 74,5; e a de função social foi de 5,2/100, com variação de 0 a 21,5. A necessidade de assistência foi, de forma complementar, maior nas áreas de autocuidado e função social do que na de mobilidade. Não encontramos, em nossa amostra, uma relação entre a idade e o grau de incapacidade, sugerindo que as portadoras de SR apresentam um nível de comprometimento que é, desde o início, bastante grave. Infelizmente, o menor comprometimento da mobilidade, comparado com as áreas de autocuidado e função social, não traz vantagens adaptativas ou maior independência às portadoras de SR. / Rett syndrome (RS) is a progressive neurological disturbance of genetic cause that affects females almost exclusively. It is caused by mutations, usually sporadic, of the MECP2 gene located in the X chromosome. Presented as main characteristics: stagnation in neuromotor development; losses of communication, visual contact, interest for people and objects; and manual stereotypes. In consequence to the serious cognitive and motor compromise, the RS patients have great difficulty in accomplishing day-to-day tasks. The objective of this work was to evaluate the functional abilities and to discover the needs of assistance by the caregiver, conforming to the established Pediatric Evaluation of Disability Inventory (PEDI). That evaluation instrument, which possesses 197 items in the areas of self-care, mobility and social function, was applied to 64 individuals with RS that matched the criteria for the classic form of the disease. Their ages ranged between 2 years and 26 years, with an average of 10 years. Among the 73 PEDI activities in the area of self-care, 52 (71.2%) were not accomplished by any child; in the area of mobility, among the 59 proposed activities, 8 (13.5%) were not done by any RS patient; and finally in the area of social function, none of the 50 (76.9%) activities among 65 were accomplished. The average performance adjusted in a scale from 0 to 100 for the area of self-care was of 8.9/100, varying from 0 to 26; for mobility, it was an average of 30.2/100, varying from 1.7 to 74.5; and of social function was 5.2/100, with variation from 0 to 21.5. The need of attendance was, in a complementary way, greater in the self-care areas and social function than in mobility. We didn\'t find, in our sample, a relationship between the age and the degree of incapacity, suggesting that RS individual present a compromising level that is from the beginning quite serious. Unfortunately, the smallest compromise of mobility, compared with the areas of self-care and social function, doesn\'t bring adaptive advantages or greater independence to the RS patients.

O presente estudo teve como objetivo identificar como a mãe e/ou pessoa significativa (aqui designada como Agente de Autocuidado – AAC) para a criança, fazem uso das orientações recebidas por ocasião da alta hospitalar, por meio da identificação dos requisitos universais da criança e das habilidades referidas pelo AAC em realizar os cuidados. Baseado na Teoria do Déficit de autocuidado de Dorothea Orem. Visa ainda, contribuir e oferecer subsídios para a melhoria da qualidade da assistência prestada, dentro do programa de orientação desenvolvido pela equipe interdisciplinar. É um estudo exploratório, descritivo com abordagem qualitativa segundo BARDIN (1977). Foram realizadas 30 entrevistas com os AAC da criança portadora de fissura lábio-palatal, em dois momentos distintos; a primeira realizada após a cirurgia antes da alta hospitalar e a segunda no período de 8 a 10 dias após a alta hospitalar realizada por meio de telefonema do AAC para a pesquisadora ou da pesquisadora para o AAC, Após a análise das entrevistas emergiram subcategorias relacionadas aos aspectos emocionais e a habilidade do agente de autocuidado para realizar os cuidados com a criança portadora de fissura lábio-palatal, evidenciando que a grande maioria dos agentes de autocuidado conseguem realizar satisfatóriamente os cuidados e uma pequena parcela vivenciou dificuldades para realizar os mesmos. Frente a estes dados devemos prestar maior atenção às particularidades individuais de cada agente de autocuidado, implementando ações educativas de enfermagem no preparo da alta que venham suprimir tais dificuldades fundamentadas em dados concretos, uma vez que não podemos acompanhar lado a lado o pós-operatório devido a distância que separa a criança do hospital / The present study had as an objective to understand, describe and analyse the way how the mother and/or the significant person (here designated as selfcare agent - AAC) for the child, use the directions received on the occasion of the discharge, by means of the identifications of the universal requirements of the child and of the capabilities mentioned by the AAC in performing care, based on Orem\'s Theory of the Deficit of Selfcare. It also intends to contribute and offer subsidies for the improvement of the quality of care, within the program of orientation developed by the interdisciplinary team. It is an exploratory study, descriptive with a qualitative approach. Sixty interviews were performed with the AAC for the lip-palate clefted child, in two distinct moments: the first was performed in the post-operatory period before the discharge and the second was performed by phone, in a period within 8 to 10 days after the discharge. Subcategories emerged after the analisys of the interviews related to the emotional aspects and the capability of the agent of selfcare, including experience to perform care for the lip and palate clefted child, evidencing that most of the agents of selfcare are able to perform care without difficulties. With relation to the directions offered by the nursing team and mentioned in different dimensions and perspectives by the AAC, stand out: the adequacy of answers of the AAC with relation to hold the child (95.3%); care with earache (94.3%); care with feeding (91.4%) and care when returning for the evaluation and surgery (88.6%). The other items (choking, regurgitation, vomits, deglutition, loss of weight and noisy breathing) are situated bellow the 70.0% of the answers considered as adequate in this study

En av de vanligaste folksjukdomarna i Sverige är astma. Det finns många vårdcentraler som har en astmamottagning med specialiserade sjuksköterskor och läkare. Distriktssköterskan har en stor betydelse genom att erbjuda undervisning och ge god omvårdnad för att patienten själv ska kunna hantera sin sjukdom. Distriktssköterskan arbetar med olika omvårdnadsstrategier för att behandla och hjälpa sina patienter. Vid astma är egenvård av största vikt för att uppnå en god symtomkontroll och för patientens möjlighet att uppleva hälsa. Syftet med studien var att belysa vilka omvårdnadsstrategier distriktssköterskan använder i behandlingen av astma. I denna studie har en kvalitativ ansats använts och tio sjuksköterskor som innehar funktionen astmasjuksköterska har intervjuats. Två av dessa sjuksköterskor saknade specialistutbildning till distriktssköterska. En intervjuguide användes med en inledande fråga där informanten ombads att beskriva ett möte med en astmapatient. Analys av data har skett med hjälp av kvalitativ innehållsanalys.I resultatet framkom att i de omvårdnadsstrategier som distriktssköterskan utför finns en tydlig strävan att inge trygghet och kunskap till patienten. Informanterna betonar vikten av att skapa en god relation till patienten för att kunna förmedla kunskap, ge stöd och rådgivning. Enligt föreliggande studie kan det finnas belägg för vidare forskning inom området bemötande samt stöd och rådgivning riktat till patienter med astma. Studien kan ge distriktssköterskan vidare möjligheter att bli medvetna och reflektera över vikten av att skapa god relation. / Program: Specialistsjuksköterskeutbildning med inriktning mot distriktssköterska