Introdução: A dor neonatal merece atenção diferenciada pelos profissionais de saúde, uma vez que os recém-nascidos (RNs) não se expressam verbalmente. A grande dificuldade existente para avaliar e tratar a dor em RNs internados em Unidades de Terapia Intensiva Neonatal (UTIN) continua sendo uma preocupação para profissionais e pesquisadores da área. Nesse sentido, essa pesquisa tem como pergunta: Como se dão as práticas de avaliação e tratamento da dor em RNs internados em UTINs de Curitiba (PR) e Região Metropolitana? Objetivo geral: Descrever o conhecimento e as práticas de manejo da dor do RN, empregadas por enfermeiros que atuam em UTINs. Objetivos específicos: Verificar o conhecimento dos enfermeiros sobre o manejo da dor de RNs internados; caracterizar as estratégias não farmacológicas e farmacológicas adotadas pelos enfermeiros para o controle da dor de RNs internados; verificar a forma de registro da avaliação e do tratamento da dor realizada pelos enfermeiros. Metodologia: Estudo transversal realizado em seis hospitais de Curitiba (PR) e Região Metropolitana que possuem UTIN com atendimento pelo Sistema Único de Saúde (SUS), a amostra do estudo foi constituída por 51 enfermeiros. A coleta de dados se deu por meio de questionários contendo informações a respeito da caracterização das unidades, um questionário referente ao perfil dos enfermeiros, formação, atuação e qualificação profissional e outro sobre conhecimentos e práticas do manejo da dor neonatal. A análise dos dados ocorreu pelo Statistical Package for Social Sciences (SPSS versão 21.0) e o nível de significância adotado foi de 5%. Resultados: A maioria dos enfermeiros era mulheres com idade entre 20 e 30 anos e tempo de formação de 1 a 5 anos. Os profissionais responsáveis pela avaliação da dor do RN eram em sua maioria enfermeiros (84,3%), seguidos por técnicos (62,7%) e auxiliares de enfermagem (11,8%). A maioria dos enfermeiros concordou que os RNs são capazes de sentir dor, porém 34,7% afirmaram nunca utilizar escalas para avaliar a dor do RN. 98% dos enfermeiros concordaram que é importante registrar a dor no prontuário do RN, sendo a evolução e anotação de enfermagem os locais mais mencionados em que ocorre o registro. As medidas não farmacológicas para alívio da dor neonatal assinaladas pelos enfermeiros foram: glicose oral, sucção não nutritiva, posicionamento, ninho, diminuição de estímulos auditivos, método canguru, toque, diminuição de estímulos visuais, contenção, aleitamento materno, massagem e musicoterapia. O Paracetamol e o Fentanil foram as medidas farmacológicas mais assinaladas pelos enfermeiros, seguidos pela Morfina, Codeína, Midazolam, Hidrato de Cloral e Lidocaína. Conclusões: Os enfermeiros conhecem as medidas farmacológicas e não farmacológicas para alivio da dor neonatal, porém a prática difere dos conhecimentos apresentados por não utilizarem estas medidas para alívio da dor em RNs. / Introduction: The neonatal pain needs special attention by health professionals, because newborns dont verbalize. The large difficulty to assess and treat pain in newborns admitted in Neonatal Intensive Care Units (NICU) is a big concern for professionals and researchers. For this reason, this research has the question: What are the evaluation practices and treatment of pain in newborns admitted to NICUs in Curitiba (PR) and metropolitan area? General aim: To describe the knowledge and practices about newborns pain relief employed by nurses that work in NICUs. Specifics aims: To verify the knowledge of nurses on the management of hospitalized newborns pain, to characterize the pharmacological and non-pharmacological strategies used by nurses to control hospitalized newborns pain and identify the ways of registration of the evaluation and treatment of pain held by nurses. Methodology: Cross-sectional study that occurred in six hospitals in Curitiba, Paraná State and metropolitan area that have NICU with care by the Unified Health System. The study sample consisted of 51 nurses. The data collection was through questionnaires containing information about the characterization of the units, a questionnaire relating to the profile of nurses, education, experience and professional qualifications and another questionnaire about knowledge and practices of management of neonatal pain. Analysis of the data was the Statistical Package for Social Sciences (SPSS - version 21.0) and the significance level was 5%. Results: The majority of nurses are women, the ages are between 20 and 30 years and 1-5 years of graduation. The professionals responsible for newborns pain assessment are mostly nurses (84.3%), followed by technicians (62.7%) and nursing assistant (11.8%). Most of the nurses agree that newborns are capable of feeling pain, but 34.7% reported never using scales to assess newborns pain. 98% of the nurses agree that is important to register the pain on newborn s chart record, being the evolution and nursing note the most mentioned places where the registration takes place. The non-pharmacological measures to relieve neonatal pain marked by nurses were: oral glucose, non-nutritive sucking, positioning, nest, decreased auditory stimuli, kangaroo method, touch, decreased visual stimuli, containment, breastfeeding, massage and music therapy. Paracetamol and Fentanyl were the pharmacological measures more marked by nurses, followed by Morphine, Codeine, Midazolam, Chloral Hydrate and Lidocaine. Conclusions: The nurses know the pharmacological and non-pharmacological measures to relief neonatal pain, but the practice differs from the knowledge shown because they do not use these measures to relief pain in newborns.

Introdução: A dor neonatal merece atenção diferenciada pelos profissionais de saúde, uma vez que os recém-nascidos (RNs) não se expressam verbalmente. A grande dificuldade existente para avaliar e tratar a dor em RNs internados em Unidades de Terapia Intensiva Neonatal (UTIN) continua sendo uma preocupação para profissionais e pesquisadores da área. Nesse sentido, essa pesquisa tem como pergunta: Como se dão as práticas de avaliação e tratamento da dor em RNs internados em UTINs de Curitiba (PR) e Região Metropolitana? Objetivo geral: Descrever o conhecimento e as práticas de manejo da dor do RN, empregadas por enfermeiros que atuam em UTINs. Objetivos específicos: Verificar o conhecimento dos enfermeiros sobre o manejo da dor de RNs internados; caracterizar as estratégias não farmacológicas e farmacológicas adotadas pelos enfermeiros para o controle da dor de RNs internados; verificar a forma de registro da avaliação e do tratamento da dor realizada pelos enfermeiros. Metodologia: Estudo transversal realizado em seis hospitais de Curitiba (PR) e Região Metropolitana que possuem UTIN com atendimento pelo Sistema Único de Saúde (SUS), a amostra do estudo foi constituída por 51 enfermeiros. A coleta de dados se deu por meio de questionários contendo informações a respeito da caracterização das unidades, um questionário referente ao perfil dos enfermeiros, formação, atuação e qualificação profissional e outro sobre conhecimentos e práticas do manejo da dor neonatal. A análise dos dados ocorreu pelo Statistical Package for Social Sciences (SPSS versão 21.0) e o nível de significância adotado foi de 5%. Resultados: A maioria dos enfermeiros era mulheres com idade entre 20 e 30 anos e tempo de formação de 1 a 5 anos. Os profissionais responsáveis pela avaliação da dor do RN eram em sua maioria enfermeiros (84,3%), seguidos por técnicos (62,7%) e auxiliares de enfermagem (11,8%). A maioria dos enfermeiros concordou que os RNs são capazes de sentir dor, porém 34,7% afirmaram nunca utilizar escalas para avaliar a dor do RN. 98% dos enfermeiros concordaram que é importante registrar a dor no prontuário do RN, sendo a evolução e anotação de enfermagem os locais mais mencionados em que ocorre o registro. As medidas não farmacológicas para alívio da dor neonatal assinaladas pelos enfermeiros foram: glicose oral, sucção não nutritiva, posicionamento, ninho, diminuição de estímulos auditivos, método canguru, toque, diminuição de estímulos visuais, contenção, aleitamento materno, massagem e musicoterapia. O Paracetamol e o Fentanil foram as medidas farmacológicas mais assinaladas pelos enfermeiros, seguidos pela Morfina, Codeína, Midazolam, Hidrato de Cloral e Lidocaína. Conclusões: Os enfermeiros conhecem as medidas farmacológicas e não farmacológicas para alivio da dor neonatal, porém a prática difere dos conhecimentos apresentados por não utilizarem estas medidas para alívio da dor em RNs. / Introduction: The neonatal pain needs special attention by health professionals, because newborns dont verbalize. The large difficulty to assess and treat pain in newborns admitted in Neonatal Intensive Care Units (NICU) is a big concern for professionals and researchers. For this reason, this research has the question: What are the evaluation practices and treatment of pain in newborns admitted to NICUs in Curitiba (PR) and metropolitan area? General aim: To describe the knowledge and practices about newborns pain relief employed by nurses that work in NICUs. Specifics aims: To verify the knowledge of nurses on the management of hospitalized newborns pain, to characterize the pharmacological and non-pharmacological strategies used by nurses to control hospitalized newborns pain and identify the ways of registration of the evaluation and treatment of pain held by nurses. Methodology: Cross-sectional study that occurred in six hospitals in Curitiba, Paraná State and metropolitan area that have NICU with care by the Unified Health System. The study sample consisted of 51 nurses. The data collection was through questionnaires containing information about the characterization of the units, a questionnaire relating to the profile of nurses, education, experience and professional qualifications and another questionnaire about knowledge and practices of management of neonatal pain. Analysis of the data was the Statistical Package for Social Sciences (SPSS - version 21.0) and the significance level was 5%. Results: The majority of nurses are women, the ages are between 20 and 30 years and 1-5 years of graduation. The professionals responsible for newborns pain assessment are mostly nurses (84.3%), followed by technicians (62.7%) and nursing assistant (11.8%). Most of the nurses agree that newborns are capable of feeling pain, but 34.7% reported never using scales to assess newborns pain. 98% of the nurses agree that is important to register the pain on newborn s chart record, being the evolution and nursing note the most mentioned places where the registration takes place. The non-pharmacological measures to relieve neonatal pain marked by nurses were: oral glucose, non-nutritive sucking, positioning, nest, decreased auditory stimuli, kangaroo method, touch, decreased visual stimuli, containment, breastfeeding, massage and music therapy. Paracetamol and Fentanyl were the pharmacological measures more marked by nurses, followed by Morphine, Codeine, Midazolam, Chloral Hydrate and Lidocaine. Conclusions: The nurses know the pharmacological and non-pharmacological measures to relief neonatal pain, but the practice differs from the knowledge shown because they do not use these measures to relief pain in newborns.

Este estudo foi motivado pelas inquietações surgidas durante a experiência profissional da pesquisadora, no trabalho com recém-nascidos prematuros e seus familiares. Trata-se de pesquisa do tipo descritivo, com obtenção e tratamento de dados qualitativos, que teve como objetivo identificar a vivência da mãe de recém-nascido prematuro, egresso de Unidade Neonatal, e sobre o cuidado do bebê, no domicílio. O projeto foi aprovado pela Comissão de Ensino e Pesquisa do Hospital Estadual de Sumaré, campo de estudo, e pelo Comitê de Ética em Pesquisa da Universidade Estadual de Campinas (UNICAMP). Foram entrevistadas 12 mães, no retorno ambulatorial do bebê prematuro, após aproximadamente 10 dias da alta da Unidade Neonatal. Os dados foram coletados, no período de julho a outubro de 2008, por meio de entrevistas e tratados pela técnica do Discurso do Sujeito Coletivo (DSC) proposto por Fernando Lefèvre. Dos relatos obtidos, emergiram oito DSCs assim distribuídos: 1-Vivenciando o cuidado do prematuro; 2-Reproduzindo o que aprendeu na unidade neonatal; 3-Tentando atender às necessidades do prematuro; 4-Falando de aleitamento; 5-Recebendo ajuda dos familiares; 6-Expressando sentimentos de satisfação; 7-Citando a Cartilha da Unidade Neonatal e 8-Expressando dificuldade para cuidar do prematuro. Os resultados revelam a importância da Unidade Canguru que possibilita à mãe receber orientações contínuas sobre o cuidado do bebê prematuro, em Unidade Neonatal, de modo a habilitá-la para atender com segurança às demandas do filho, no domicílio. Outro dado de relevância é que as mães consultam a Cartilha de orientação oferecida pelo serviço, apenas diante de alguma dúvida sobre o cuidado a ser oferecido ao bebê prematuro, dispensando sua completa leitura. Os relatos revelam que as estratégias para a capacitação materna para o cuidado do prematuro devem ser adotadas pelas unidades neonatais desde a admissão do recém-nascido, de modo a proporcionar maior segurança no desenvolvimento de habilidades no cuidado do filho e para favorecer a criação do vínculo entre ambos / This study is the result of anxieties brought about the authors professional experience working with premature newborns and their families. This is a descriptive research, with gathering and treatment of qualitative data, aimed at identifying the experience of premature newborns mothers released from Neonatal Units with regards to the babys care at home. The project had approved of the Teaching and Research Commission of the Sumaré State Hospital, field of study, and the State University of Campinas Committee of Ethics in Research. Twelve mothers were interviewed in the follow-up visits of premature babies approximately 10 days after release from the Neonatal Unit. Data were collected between July and October of 2008 through interviews and treated with the technique of the Discourse of the Collective Subject (DCS) proposed by Fernando Lefèvre. From the descriptions emerged 8 DCSs, grouped as follows: 1-Experiencing the care for the premature baby; 2-Reproducing what was learned in the Neonatal Unit; 3-Trying to fulfill the premature babys needs; 4 Speaking about breast feedind; 5-Being helped by family members; 6-Expressing feelings of satisfaction; 7-Quoting the Neonatal Units guide book; and 8-Expressing difficulty to care for the premature baby. The results reveal the importance of the Kangaroo Unit, which makes possible for mothers to receive continuous guidance regarding the care for premature babies in Neonatal Units so as to enable them to securely respond to their childs demands at home. Another relevant piece of information is that mothers check the guide book that the service gives them only if theres a doubt regarding the kind of care that should be given to the premature baby, rather than fully reading it. The narratives show that the strategies to build the capacity of mothers to care for premature babies should be adopted by neonatal units since the newborn is taken in, so as to provide more security in the development of abilities in the care for the child and to encourage the creation of ties between them

Purpose: There is evidence that mothers of infants hospitalized in the Neonatal Intensive Care Unit (NICU) experience elevated rates of psychopathology. However, most studies have focused on very preterm infants, with little attention to mothers of moderate- to late-preterm infants. In addition, the majority of previous research has been cross-sectional, which does not allow for the examination of symptoms over time. Method: The current study investigated whether rates of psychopathology are elevated in mothers of moderate- to late-preterm infants during/following infant hospitalization in the NICU, and associated protective and risk factors. Mothers completed self-report questionnaires during the infant’s hospitalization and six months later. Results: Mothers of moderate- to late-preterm infants hospitalized in the NICU showed elevated rates of depression, anxiety, and PTSD compared to mothers of term infants at both baseline and six months post-birth. Importantly, no differences in psychopathology between mothers of moderate-preterm and late-preterm infants were found at either time point. A number of important risk factors were identified, including previous maternal mental illness, more severe infant health problems, and a lack of coping skills. Potential protective factors were also identified, including mother-infant contact, maternal optimism, and expectations about the infants potential for recovery. Limitations: The current study did not include mothers who were unable to visit the NICU or fathers/siblings, and future studies might include these groups to better understand familial adjustment to the NICU hospitalization of an infant. In addition, research in the future should examine a larger sample of NICU mothers in order to conduct more in-depth longitudinal analyses of risk and protective factors. Finally, future studies will need to pilot and test the efficacy of the proposed screening and programmatic components in order to assess feasibility, acceptability, and effectiveness with the target population. Conclusions: These results may inform the development of NICU programming aimed at buffering the development of psychopathology in mothers. Identified risk and protective factors could help in effectively targeting intervention programs to mothers most in need while the infant is in the hospital and over time.

CoordenaÃÃo de AperfeiÃoamento de Pessoal de NÃvel Superior / A pele do bebà quando internado em uma Unidade de Terapia Intensiva Neonatal (UTIN), apresenta predisposiÃÃo a ser lesionada, diante da necessidade de muitos procedimentos especÃficos, acabando por expÃ-lo a manipulaÃÃes necessÃrias, mas um tanto desgastantes para o mesmo. Objetivou-se avaliar as lesÃes de pele que acometem recÃm-nascidos internados em uma UTIN. Estudo prospectivo, quantitativo, exploratÃrio descritivo, realizado no perÃodo de marÃo a maio/2007, numa instituiÃÃo pÃblica em Fortaleza-CE. ConstituÃram o universo e a amostra 137 recÃm-nascidos, que estiveram internados nas UTIN, os quais todos foram autorizados à participaÃÃo nesta pesquisa pelos pais. Destes, 36 apresentaram lesÃes de pele. Na coleta de dados, utilizou-se um instrumento que permitiu o registro das lesÃes atravÃs da observaÃÃo direta dos recÃm-nascidos durante a higiene corporal, trocas: de fralda, de sonda, de venda ocular; retiradas: de membrana semipermeÃvel, bandagem adesiva elÃstica e/ou micropore, eletrodos, hidrocolÃide que estavam fixados diretamente na pele destes, durante as punÃÃes, dentre outros procedimentos. Investigou-se 137 recÃm-nascidos, a maioria prematuro (80%), sexo masculino (63%), nascido de parto abdominal (61%), apgar de 7 a 10 no 1 minuto (40%), diagnosticados com prematuridade moderada (49%), baixo peso ao nascer (39%), adequado para a idade gestacional (74%), medindo entre 41 e 47cm (44%). Destes, 36 recÃm-nascidos (26%) apresentaram lesÃes de pele, totalizando 51 lesÃes. Foram identificadas: hematomas (46%), eritemas (18%), escoriaÃÃes (12%), equimoses (10%), pÃstulas (6%), descamaÃÃes (4%), mielomeningocele (2%) e gastrosquise (2%). Quando ocorreram as lesÃes, os recÃm-nascidos estavam em uso de hidrataÃÃo venosa (84%), antibiÃtico (78%), ventilaÃÃo mecÃnica (53%), fototerapia (33%), nutriÃÃo parenteral (27%), hemotransfusÃo (8%), oxihood (8%), cpap nasal (6%) e O2 circulante (4%); acomodados em incubadora aquecida (86%), incubadora de transporte (10%) e em berÃo de calor radiante (4%). Predominaram lesÃes nos membros (52%), no tronco (24%), na cabeÃa (16%) e em outros (8%). As associaÃÃes realizadas foram: punÃÃo arterial (32%), extravasamento (14%), assadura (14%), punÃÃo venosa (8%), impetigo (4%), indeterminada (4%), mà formaÃÃo congÃnita (4%), retirada da membrana transparente (4%), retirada da bandagem adesiva (4%), ressecamento da pele (4%), infecÃÃo (2%), retirada da fita hipoalergÃnica (2%) e tocotraumatismo (2%). Quanto a Ãrea da lesÃo (40%) eram < 1cm2, no tamanho 68% eram lesÃes entre 1 e 2cm. A maioria tinha a forma geogrÃfica (38%) e distribuiÃÃo localizada (92%). Os recÃm-nascidos que desenvolveram lesÃes tinham diagnÃsticos de âprematuridadeâ (92%), âsÃndrome do desconforto respiratÃrioâ (43%), âasfixiaâ (24%), ârecÃm-nascido a termoâ (8%); ârisco de infecÃÃoâ (6%), ârisco de hipoglicemiaâ (6%), âgastrosquiseâ (2%) e âmielomeningoceleâ (2%). A maioria nasceu com peso entre 550 - 999g, (47%), sendo o peso destes no dia em que ocorreu a lesÃo entre 455 - 999g, (47%). A maioria eram neonatos (84%) e as lesÃes (47%) surgidas antes do 7 dia de vida. Ao associar: tipos de lesÃes, diagnÃsticos, PN e IG dos RNâs, somente o diagnÃstico âprematuridadeâ apresentou associaÃÃo estatÃstica significante: âp de Fisher-Freeman-Halton = 0,496â. Consagra-se na trajetÃria deste estudo o cuidado de enfermagem ao RN que, indiscutivelmente, deve ser holÃstico e diferenciado, considerando suas peculiaridades. / Infants in the Neonatal Intensive Care Unit (NICU) often get skin lesions on account of the many stressful procedures they are exposed to. This prospective, quantitative and descriptive study was carried out at a public health facility in Fortaleza (Northeastern Brazil) from March to May 2007, in order to investigate skin lesion patterns in infants in the NICU setting. The study population consisted of 137 hospitalized infants. Informed written consent was obtained from the infantsâ caretakers. The data collection instrument registered skin lesions through direct observation during bathing, change of diapers, catheters and eye patches and during removal of semi-permeable membranes, elastic adhesive bandages and/or micropores, electrodes and hydrocolloid dressings applied to the skin during punction, among other procedures. Eighty percent of the infants were premature, 63% were male, 61% were caesarean births, 40% presented first-minute apgar scores of 7-10, 49% were diagnosed with moderate prematurity, 74% were full-term, 39% had low birth weight and 44% measured 41â47cm. Thirty-six infants had skin lesions (total 51 lesions) in the form of bruises (46%), erythema (18%), excoriation (12%), ecchymosis (10), pustulas (6%), scaling (4%), myelomeningocele (2%) or gastroschisis (2%). The lesions were inflicted while the infants were being treated with intravenous hydration (84%), antibiotics (78%), mechanical ventilation (53%), phototherapy (33%), parenteral nutrition (27%), blood transfusion (8%), oxygen hood (8%), nasal cpap (6%) or circulating oxygen (4%), or were in a heated incubator (86%), transport incubator (10%) or heated crib (4%). Lesions were observed most often on limbs (52%), torso (24%), head (16%) and other sites (8%). The causes identified were arterial puncture (32%), leaking (14%), contact dermatitis (14%), vein puncture (8%), impetigo (4%), undetermined (4%), congenital malformation (4%), removal of the caul (4%), removal of adhesive bandage (4%), skin dryness (4%), infection (2%), removal of hypoallergenic tape (2%) and birth traumatism (2%). Forty percent of lesions measured < 1cm2 and 68% measured 1-2cm. Most were well defined (38%) and/or localized (92%). Infants with lesions presented prematurity (92%), syndrome of respiratory distress (43%), asphyxia (24%), full-term delivery (8%); risk of infection (6%), risk of hypoglycemia (6%), gastroschisis (2%) or myelomeningocele (2%). Most (47%) weighed 550-999g at birth, with lesions occurring at 455-999g in 47%. Most were newborn (84%) and lesions appeared before the seventh day of life in 47% of cases. Among the parameters lesion type, diagnosis, PN, IG and prematurity, only the latter presented a statistically significant association (p=0.496, by the Fisher-Freeman-Halton test). The study shows the importance of providing the newborn with good-quality holistic nursing care with a view to the special needs of this patient population.

Submitted by Rosivalda Pereira (mrs.pereira@ufma.br) on 2017-05-18T17:50:01Z No. of bitstreams: 1 LucianaPalacioCabeca.pdf: 2342971 bytes, checksum: e2373d00bc8296307898091b1041db60 (MD5) / Made available in DSpace on 2017-05-18T17:50:01Z (GMT). No. of bitstreams: 1 LucianaPalacioCabeca.pdf: 2342971 bytes, checksum: e2373d00bc8296307898091b1041db60 (MD5) Previous issue date: 2014-06-15 / The environment of the Neonatal Intensive Care Unit is characterized by constant expectations of emergency situations, where the newborn will be constantly submitted to invasive procedures and subject to risks of complications and sudden changes in the general state. Thus, it is frequent that family members are approached by health professionals with information that can be translated as difficult news. The starting point of this research is associated with the rationality of the actors as well as the contexts, situations and events that emerge from the process of illness of seriously ill newborn, delimited by the following research problem: What experiences and skills emerge from announcement process of difficult news between professionals and family members in the Neonatal Intensive Care Unit? The research intended to understand skills, experiences and implications in the announcement process of difficult news in the context of the Neonatal Intensive Care Unit (NICU) from the conceptions of health professionals and families. For this it was realized descriptive exploratory study with qualitative approach. To find out information was used open interview with data analysis from the Thematic Analysis. The study was consisted in a corpus defined by 24 interviews in which involving 10 mothers of high-risk newborns hospitalized in the NICU and 14 health professionals specialized in this service and contemplated the inclusion criteria defined in the survey. From the analysis process were extracted 1.359 units of sense that after organized and grouped, built eight themes: Characterizing difficult news in the context of the Neonatal Intensive Care Unit; Dimensions Qualifying for communication of difficult news in Neonatal Intensive Care Unit; Process noise communication of difficult news in the Neonatal Intensive Care Unit; Feelings and maternal reactions and professionals front communication of difficult news in Neonatal Intensive Care Unit; Experiencing the process of communication of difficult news in Neonatal Intensive Care Unit; Maternal strategies to access information about their child in the Neonatal Intensive Care Unit; The Announcement of Difficult News in Neonatal Intensive Care Unit: Who and Where?; The Dynamics of Negotiations in the context of the Neonatal Intensive Care Unit. The theme Dimensions Qualifying for communication of difficult news in Neonatal Intensive Care Unit two sub-themes emerged: Helpers Strategies in/ for communication of difficult news in the Neonatal Intensive Care Unit; Structural Elements for Communication of difficult news in the Neonatal Intensive Care Unit. The themes and subthemes, as a result of this investigation, it is configured as elements that frame the process of communication of difficult news in context studied, sometimes facilitating others, limiting the care to the newborn and family. This dynamic movement that is health communication, the participants showed skills, knowledge, fears, insecurities and needs for the announcement of difficult news in neonatal intensive care. The themes, while groups of concepts, bring some clinical implications for the care in the neonatal intensive care which include: interventions that promote trust; recognize patterns of behavior revealed in the mother-infant relationship; opt for family-centered care; maintain, support and encourage the maternal participation in child care when appropriate; help to promote and strengthen the network of family support; increase the probability of behavior patterns for the development of relationship/attachment; care sensitive to the environment and the special needs of mothers. These are some of the statements that make it necessary to value the theme and, especially, require relational, interpersonal and communication skills among professionals, from an expanded perspective of care and caring that goes beyond the technical and technological dimension so prevalent in intensive care. / O ambiente da Unidade de Terapia Intensiva Neonatal caracteriza-se por constantes expectativas de situações de emergência, onde o recém-nascido será constantemente submetido a procedimentos invasivos e sujeito a riscos de complicações e mudanças súbitas no estado geral. Diante disto, é frequente os familiares serem abordados pelos profissionais com informações que poderão ser traduzidas como notícias difíceis. O ponto de partida desta investigação associa-se à racionalidade dos atores, aos contextos, situações e acontecimentos que emergem do processo de adoecimento do recém-nascido gravemente enfermo, delimitado pelo problema de pesquisa: Que experiências e habilidades emergem do processo de comunicação de notícias difíceis entre profissionais e familiares na Unidade de Terapia Intensiva Neonatal? A pesquisa teve como objetivo compreender habilidades, experiências e implicações no processo de comunicação de notícias difíceis no contexto da UTI Neonatal a partir das concepções de profissionais de saúde e mães de recém-nascidos de alto risco. Foi realizado estudo exploratório descritivo com abordagem qualitativa. Para apreensão dos dados foi utilizada entrevista aberta com análise dos dados por meio da Análise Temática. Participaram da pesquisa 10 mães de recém-nascidos de alto risco internados na UTI Neonatal e 14 profissionais de saúde com exercício nesse serviço e que contemplaram os critérios de inclusão definidos na pesquisa. Do processo de análise emergiram oito temas: Caracterizando notícias difíceis no contexto da Unidade de Terapia Intensiva Neonatal; Dimensões Qualificadoras para a comunicação de notícias difíceis em Unidade de Terapia Intensiva Neonatal; Ruídos do processo da comunicação de notícias difíceis na Unidade de Terapia Intensiva Neonatal; Sentimentos e reações maternas e profissionais frente à comunicação de notícias difíceis em Unidade de Terapia Intensiva Neonatal; Vivenciando o processo de comunicação de notícias difíceis em Unidade de Terapia Intensiva Neonatal; Estratégias maternas para acessar informações sobre o filho na Unidade de Terapia Intensiva Neonatal; A comunicação de Notícias Difíceis em Unidade de Terapia Intensiva Neonatal: Quem e Onde?; A Dinâmica das Negociações no contexto da Unidade de Terapia Intensiva Neonatal. No tema Dimensões Qualificadoras para a Comunicação de Notícias Difíceis em Unidade de Terapia Intensiva Neonatal emergiram dois subtemas: Estratégias Auxiliadoras no/para a Comunicação de Notícias Difíceis na Unidade de Terapia Intensiva Neonatal; Elementos Estruturais para a Comunicação de Notícias Difíceis na Unidade de Terapia Intensiva Neonatal. Os temas e subtemas configuraram-se como elementos que emolduram o processo de comunicação de notícias difíceis no contexto estudado, às vezes facilitando outras, limitando o cuidado ao recémnascido e à família. Os participantes revelaram habilidades, saberes, medos, inseguranças e necessidades para a comunicação de notícias difíceis em terapia intensiva neonatal e trouxeram algumas implicações para o cuidado em terapia intensiva neonatal das quais destaca-se: Intervenções que promovam confiança; reconhecer padrões de comportamento revelados nas relações mãe-bebê; optar pelo cuidado centrado na família; manter, apoiar e incentivar a participação materna no cuidado a criança quando apropriado; ajudar a promover e fortalecer a rede de suporte familiar; aumentar a probabilidade de padrões de comportamento para o desenvolvimento de vínculo/apego; cuidado sensível ao ambiente e às necessidades especiais das mães. Estas são algumas das assertivas que tornam necessário valorizar a temática e, sobretudo, a exigência de competências relacionais, interpessoais e comunicacionais nos profissionais, a partir de uma perspectiva ampliada do cuidado e do cuidar que ultrapassa a dimensão técnica e tecnológica tão prevalentes em terapia intensiva.

Background: Recent focus on quality and patient safety has underlined the need to involve patients in improving healthcare. “Experience-based Co-design” (EBCD) is an approach to capture and understand patient and staff (i. e. users) experiences, identifying so called “touch points” and then working together equally in improvement efforts. Purpose: This article elucidates patient (defined as the mother-newborn couple with next of kin) and staff experiences following improvement work carried out according to EBCD in a maternity ward and neonatal intensive care unit (NICU) in a small, acute hospital in Sweden. Method: An experience questionnaire, derived from the EBCD approach tool set, was used for continuously evaluating each event of the EBCD improvement project. Furthermore, a focus group interview with staff and in-depth interviews with mother-father couples were held in order to collect and understand the experiences of working together according to EBCD. The analysis and interpretation of the interview data was carried through using qualitative, problem-driven content analysis. Themes, categories and sub-categories presented in this study constitute the manifest and latent content of the participants’ experiences of Experience-based Co-design. Results: The analysis of the experience questionnaires, prior to the interviews, revealed mostly positive experiences of the participation. Both staff and patient participants stated generally happy, involved, safe, good and comfortable experiences following each event of the improvement project so far. Two themes emerged during the analysis of the interviews. For staff participants the improvement project was a matter of learning within the microsystem through managing practical issues, moving beyond assumptions of improvement work and gaining a new way of thinking. For patients, taking part of the improvement project was expressed as the experience of involvement in healthcare through their participation and through a sense of improving for the future. Discussion: This study confirms that, despite practical obstacles for participants, the EBCD approach to improvement work provided an opportunity for maternity ward /NICU care being explored respectfully at the experience level, by assuring the sincere sharing of useful information within the microsystem continuously, and by encouraging and supporting the equal involvement of both staff and patients. Staff and patients wanted and were able to contribute to the EBCD process of gathering information about their experiences, analyzing and responding to collected data, and engaging themselves in improving the same. Furthermore, the EBCD approach provided staff and patients the opportunity of learning within the microsystem. Nevertheless, the responsibility of the improvement work remained the responsibility of the healthcare professionals. Keywords: Quality Improvement, Maternity Care, Neonatal Intensive Care, Experience-based Co-design

Background: Recent focus on quality and patient safety has underlined the need to involve patients in improving healthcare. “Experience-based Co-design” (EBCD) is an approach to capture and understand patient and staff (i. e. users) experiences, identifying so called “touch points” and then working together equally in improvement efforts. Purpose:This article elucidates patient (defined as the mother-newborn couple with next of kin) and staff experiences following improvement work carried out according to EBCD in a maternity ward and neonatal intensive care unit (NICU) in a small, acute hospital in Sweden. Method: An experience questionnaire, derived from the EBCD approach tool set, was used for continuously evaluating each event of the EBCD improvement project. Furthermore, a focus group interview with staff and in-depth interviews with mother-father couples were held in order to collect and understand the experiences of working together according to EBCD. The analysis and interpretation of the interview data was carried through using qualitative, problem-driven content analysis. Themes, categories and sub-categories presented in this study constitute the manifest and latent content of the participants’ experiences of Experience-based Co-design. Results:The analysis of the experience questionnaires, prior to the interviews, revealed mostly positive experiences of the participation. Both staff and patient participants stated generally happy, involved, safe, good and comfortable experiences following each event of the improvement project so far. Two themes emerged during the analysis of the interviews. For staff participants the improvement project was a matter of learning within the microsystem through managing practical issues, moving beyond assumptions of improvement work and gaining a new way of thinking. For patients, taking part of the improvement project was expressed as the experience of involvement in healthcare through their participation and through a sense of improving for the future. Discussion: This study confirms that, despite practical obstacles for participants, the EBCD approach to improvement work provided an opportunity for maternity ward /NICU care being explored respectfully at the experience level, by assuring the sincere sharing of useful information within the microsystem continuously, and by encouraging and supporting the equal involvement of both staff and patients. Staff and patients wanted and were able to contribute to the EBCD process of gathering information about their experiences, analyzing and responding to collected data, and engaging themselves in improving the same. Furthermore, the EBCD approach provided staff and patients the opportunity of learning within the microsystem. Nevertheless, the responsibility of the improvement work remained the responsibility of the healthcare professionals.

Bakgrund: Att bli mamma till ett för tidigt fött barn (&lt;37 gestationsveckor) innebär en oväntad stress vilket påverkar hela familjen. Under de senaste årtionden har stora förbättringar skett inom perinatal vård och numera är chansen till överlevnad stor. Att barnet efter födseln vårdas på neonatal intensivvårdsavdelning (NICU) får konsekvenser för mamman både känslomässigt och i omvårdnaden av barnet. Syfte: Att undersöka föräldrastress och beskriva faktorer som påverkar tidig föräldrastress hos mammor till för tidigt födda barn när barnet är två månader i korrigerad ålder. Metod: Studien utfördes på fyra NICU i Sverige. Inklusionskriterierna för studien var att barnet var för tidigt fött samt vårdades på neonatalavdelning i minst 72 timmar. För att mäta upplevd föräldrastress fick mammorna (n=276) svara på enkäten Swedish Parental Stress Questionnaire (SPSQ) när barnet var två månader i korrigerad ålder. Resultat: Mammor vars barn inte vårdades på en samvårdsavdelning, som hade barn i kuvös, mammor till barn med äldre syskon, var äldre, rökte och/eller ammade helt upplevde mer föräldrastress än övriga mammor. Slutsats: Studien visar att faktorer i framför allt i miljön samt hos mamman har betydelse för upplevd föräldrastress. Våra resultat innebär att omhändertagandet bör bli bättre, både under tiden på neonatalavdelning men även efter utskrivning. Då studien också påvisar vikten av samvårdsavdelning bör förbättringar ske i den fysiska vårdmiljön för att minimera upplevelsen av föräldrastress. / Background: When an infant is born preterm (&lt;37 gestational weeks) unexpected stresses affect the whole family. Significant improvements in the perinatal care has been made in the recent decades and now the chance of survival is high. To become a mother in a Neonatal Intensive Care Unit (NICU) entail consequences for the mother emotionally and in her care for her infant. Aim: To investigate parental stress and describe factors associated to early parenting stress in mothers of preterm infants at two months of corrected age. Method: The study was conducted in four NICUs in Sweden. The inclusion criteria were that the infant was born prematurely and had a hospital stay for at least 72 hours. To measure perceived parental stress, the mothers (n=276) answered the Swedish Parental Stress Questionnaire (SPSQ) at two months of corrected age. Results: Mothers whose infants were not cared for in a NICU with co-care, whose infants were cared for in an incubator, who were multiparous, older, who smoked and/or who were breastfeeding exclusively, experienced more stress than their counterparts in various dimensions explored. Conclusion: The study shows that factors relating to the environment and the mother are associated to parental stress among mothers’ of preterm infants. These findings show the need for improved support, both during the NICU stay and after discharge. These findings also highlight the need for improvements in the physical environment of the NICUs to reduce the risk for parental stress.

Thesis (Ph.D.)--University of Western Sydney, 2009. / A thesis presented to the University of Western Sydney, College of Health and Science, School of Computing and Mathematics, in fulfilment of the requirements for the degree of Doctor of Philosophy. Includes bibliographies.