Submitted by Bruna Rodrigues (bruna92rodrigues@yahoo.com.br) on 2016-09-28T13:31:57Z No. of bitstreams: 1 DissMCB.pdf: 2497670 bytes, checksum: 4b1147172520363a23311ff22cdc5528 (MD5) / Approved for entry into archive by Marina Freitas (marinapf@ufscar.br) on 2016-10-10T18:33:13Z (GMT) No. of bitstreams: 1 DissMCB.pdf: 2497670 bytes, checksum: 4b1147172520363a23311ff22cdc5528 (MD5) / Approved for entry into archive by Marina Freitas (marinapf@ufscar.br) on 2016-10-10T18:33:23Z (GMT) No. of bitstreams: 1 DissMCB.pdf: 2497670 bytes, checksum: 4b1147172520363a23311ff22cdc5528 (MD5) / Made available in DSpace on 2016-10-10T18:33:34Z (GMT). No. of bitstreams: 1 DissMCB.pdf: 2497670 bytes, checksum: 4b1147172520363a23311ff22cdc5528 (MD5) Previous issue date: 2016-02-15 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) / Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP) / Visual impairment classification varies from low visual loss to total absence of vision. There are many alterations in the routine of children and teenagers who suffer with visual impairment, changing their independency, the way they do everyday activities and the relationship with other people, changing their family lives too. Based on this, we found the necessity and motivation to do this research, which aims to study the experiences of visual impaired children and teenagers. This is a qualitative and descriptive research conducted in two cities, with the Symbolic Interactionism as theoretical reference. In the city A, the identification of the families was done using the data supplied by the Secretaria Estadual de Educação do Estado de São Paulo (the official government institution for education in the state of Sao Paulo). In the city B, we obtained the data from an institution for people with visual impairment; eighteen families were interviewed, and the total number of participants was 61. Data were collected using semi-structured interviews, genogram and ecomap. They were recorded and conducted in their homes or in the institution; the research was approved by the University research ethics committee number: 1.034.350. The narrative analysis was used as the methodological reference to make the interpretation of the interviews and understand the trajectory of the families. For a better comprehension, the results were divided in themes, categories and subcategories and organized in three articles for the data analysis. The trajectory starts with the perception of the first signs of visual impairment and the surprise with the diagnosis. After, the families have to adapt their routines in order to facilitate patient’s life. Among the adaptations, there is the use of treatment resources, the necessity to adapt and accept the condition, to protect and to understand the limits to overprotection. The school environment was described as difficult and traumatic in the city A. The social support received by the family may not be characterized as social network, but as a social support. For the families who live in the city B, the support from a specialized organization was essential to deal with visual impairment. We may conclude that it is necessary the qualification of education and health professionals to modify the reality of these families. This research may support improvements in current public health policies and create new ones for the inclusion of visual impaired patients / A classificação da deficiência visual (DV) abrange desde a perda visual leve até a ausência total de visão. Inúmeras modificações ocorrem no cotidiano de crianças e adolescentes com DV, alterando a independência, a maneira como realizam as atividades de vida diária e até as interações estabelecidas com o outro. Essa realidade acarreta modificações na vida familiar. Assim, surgiu a necessidade e motivação para realizar essa pesquisa que objetivou apreender a experiência de famílias de crianças e adolescentes com deficiência visual. Pesquisa qualitativa e descritiva, realizada em dois municípios, que utilizou como referencial teórico o Interacionismo Simbólico. No município A, a identificação das famílias foi realizada a partir do cadastro das matrículas de crianças e adolescentes com DV fornecido pela Secretaria Estadual de Educação do Estado de São Paulo. Já no município B contatamos uma instituição que fornece apoio para as pessoas com DV. Entrevistouse 18 famílias, totalizando 61 participantes. A coleta de dados ocorreu por meio de entrevista semiestruturada e com a confecção do Genograma e Ecomapa; foram gravadas em áudio e realizadas no domicílio ou na instituição de apoio. A pesquisa foi aprovada pelo Comitê de Ética em Pesquisa sob o parecer número: 1.034.350. A análise de narrativa foi adotada como referencial metodológico para a interpretação das entrevistas e assim foi compreendida a trajetória vivenciada pelas famílias. Para a compreensão os resultados foram divididos em temas, categorias e subcategorias. Os resultados foram estruturados em três artigos científicos que representam a análise dos dados. A trajetória é iniciada com a percepção dos primeiro sinais da DV, e com a surpresa da revelação do diagnóstico. Essa notícia faz com que a família busque adaptações nas atividades diárias para que o cotidiano do membro com deficiência visual seja facilitado. Dentre as adaptações realizadas pela família esteve relacionada aos recursos de tratamento, a necessidade de aceitar a condição e respeitar as peculiaridades da pessoa com DV e a necessidade da família em supervisionar e buscar conhecer o limiar entre a proteção e superproteção. A relação e experiência no ambiente escolar também foram destacadas no município A como difíceis e traumáticas. O apoio social que a família acessa para sustentação frente a DV ainda não pode ser caracterizado como rede social, mas sim como apoio social advindo de algumas pessoas. Para as famílias residentes no município B o apoio exercido por uma instituição especializada foi essencial para enfrentarem e se instrumentalizarem frente a DV de seus membros. Assim, o estudo sinaliza que modificações nas práticas dos profissionais da saúde e da educação são necessárias para aprimorar a realidade dessas famílias. A pesquisa pode subsidiar a melhoria de políticas públicas já existentes e criar novas voltada para a melhoria da rede de apoio e da inclusão social das pessoas com DV.

Introdução: O relacionamento estabelecido entre profissionais de saúde, criança e família durante os cuidados de final de vida é complexo e multidimensional. Poucas evidências mostram como os relacionamentos são estabelecidos no contexto de final de vida da criança e influenciam no luto após a morte de um filho. Objetivo: Interpretar a experiência de pais sobre os relacionamentos estabelecidos com os profissionais de saúde durante o final de vida da criança com câncer no hospital. Método: Trata-se de uma pesquisa qualitativa, guiada pela hermenêutica filosófica de Gadamer. A coleta dos dados foi realizada por meio de observações de campo em um hospital oncológico pediátrico com famílias de crianças hospitalizadas em situação de final de vida, entrevista com pais enlutados pelo menos 6 meses após o óbito da criança e análise de prontuários. Para a análise dos dados, o processo de transcrição, leitura e releitura dos dados, revisão das notas de campo e reflexão sobre os dados com outros pesquisadores ajudaram na compreensão do fenômeno para a geração de interpretações. Para tanto, foram identificadas unidades de significados nos dados que, posteriormente, foram agrupadas por similaridade para a formação indutiva de temas. Resultados: Os relacionamentos entre pais e profissionais da saúde no final de vida da criança com câncer hospitalizada desvelam fenômenos do encontro e da interação interpessoal presentes na situação de doença, morte e perda. Esses relacionamentos são permeados pela presença de valores humanos e são estabelecidos de forma dinamica com vínculos diversos. Existem componentes evidentes no relacionamento durante o final de vida da criança no hospital, tal como o amparo, o silêncio, a deterioração, a tolerância, a hierarquia, o compartilhamento e a confiança, bem como, fatores internos e externos que influenciam nas interações. Por meio dos relacionamentos, os pais reavaliam o próprio papel, enquanto vivenciavam a experiência inesperada de perder um filho e significados atribuídos à doença e à perda são associados aos encontros mesmo anos após a morte do filho. Considerações finais: Os relacionamentos servem de base para fortalecer e suportar os pais a exercerem o papel de cuidadores para garantir a excelência no cuidado do filho. A qualidade dos relacionamentos entre pais e profissionais da saúde torna-se uma lembrança marcante no processo de luto e estabelecem uma conexão permanente com o filho falecido. Um olhar para o relacionamento entre familiares e profissionais integrando a ciência do cuidado proporciona a base de paradigmas não positivistas, que são urgentes nas situações de final de vida. Este estudo pode contribuir com as políticas de enfermagem na consolidação de futuras diretrizes sobre a qualidade na prática do cuidado de final de vida da criança, facilitando para as famílias manter vínculos significativos durante o processo de doença, perda e luto. / Introduction: The relationship established between family and healthcare providers during the childs end-of-life care is complex and multidimensional. There are few evidences which explore how these relationships during the childs last hospitalization influence familial adaptation after loss. Objective: To interpret parents experience in their relationship with healthcare providers during the childs end-of-life with cancer in the hospital. Methods: This is a qualitative research, guided by Gadamers philosophical hermeneutics. Data collection was through field observations conducted in a pediatric oncology hospital with hospitalized families in end-of-life situation, interviews with bereaved parents at least 6 month after the childs death and medical records analysis. For the data analysis, the process of transcription, reading and re-reading the data, reviewing field notes and reflection on the data with other researchers helped understand the phenomenon to generate interpretations. Therefore, units of meaning emerged from the data were grouped, and themes were inductively determined and submitted to an interpretation process. Results: Relationships between parents and healthcare providers during a childs end-of-life process unveil the encounters and interpersonal interactions phenomena in illness and loss trajectory. These relationships are permeated with human values and are established in a dynamic way with various bondings. There are evident components in a child´s end-of-life context, such as presence, silence, deteriorations, tolerance, hierarchy, collaboration and trusting, as well as internal and external factors which influence the interactions. Through relationships, parents reevaluate their own role, while they live the unexpected experience of losing a child and attribute meanings to the loss. Final considerations: Relationships serve as a basis for strengthening and supporting parents in providing excellence in the child\'s care. The quality of the relationship between parents and healthcare providers is a remarkable memory of the child\'s life during the bereavement process. Looking into the relationship between parents and providers integrating it with caring science provides a basis for non-positivist paradigms which are urgent in end-of-life situations. This study aims to contribute to end-of-life nursing policies in recognizing the components to improve the quality of the relationships as a starting point for care which will allow families to have a safe base while experiencing the child\'s illness and the bereavement process.

Abstract The purpose of this study was to evaluate characteristics, the cost of the intervention and effects of participation on the first year preterm cost of care. Home-based intervention is a new preventive nursing intervention, which focuses mainly on early interaction between an infant and its mother. Many long-term advantages have been found in developmental issues of preterm infants, on mothers caring skills and the mother-child relationship. Even though those positive effects are well known, there still remains a gap of information concerning effective characteristics of the intervention as well as costs of such an intervention. The study focused on two main questions: 1) What are the characteristics of the intervention perceived by the mothers with preterm infants? 2) What are the costs of the intervention and what kind of effects did the intervention have on the first year cost of care of preterm infants? This was a retrospective evaluation study. The population consisted of preterm infants (≤ 32 gw), who were treated in eastern an northern Finland during 1996?1998. All infants received usual preterm care. In addition to this, the intervention group participated in the intervention. Data was gathered during 1998?1999. Two groups of mothers were interviewed. The first were mothers (N = 17), who described the care for a preterm infant at home. The other group of mothers (N = 7) evaluated the intervention. Content analysis was performed inductively and deductively. The last one was based on concept and characteristics of social support. Cost of the intervention was evaluated as salary, time and travelling cost for the nurse. Costs of preterm care were computed as direct and indirect social and family costs and compared the first year cost of intervention (N = 18) and control (N = 118) group of preterm infants. Data was gathered by a questionnaire and from hospital statistics and patient files. Descriptive statistical methods as well comparing the means were used. The results indicated an exceptional motherhood of the mothers with preterm infants. The exceptionality consisted of challenges of care for the infant, needs for information related to prematurity and care for the infant. Many fears, worries and feelings of guilt burden the mothers. The home-based intervention supported the mothers of the intervention group by equipping them with situation suitable information concerning prematurity and giving them emotional, integrative and active support. The mean cost of the intervention was 970 euroa per an infant to the hospital. Costs of new episodes of care and primary health care were smaller among the intervention group than among the control group. Cost-analysis indicated that the initial phase of care formed the main proportion of infants' first year cost of care. The results suggest that the home-based intervention may have potential to support mothers with preterm infant without significantly increasing the cost of care. / Tiivistelmä Tämän tutkimuksen tarkoituksena oli kuvailla vauvaperhetyön sisältöä, arvioida vauvaperhetyön tuottamisesta aiheutuvia kustannuksia sairaalalle sekä vertailla siihen osallistumisen vaikutuksia keskosten ensimmäisen elinvuoden hoitokustannuksiin. Vauvaperhetyöllä on havaittu olevan vuosia kestäviä suotuisia vaikutuksia keskosten kehitykseen, äidin hoivataitoihin ja vuorovaikutukseen. Kuitenkaan ei ole tietoa siitä, millaisena tuen vastaanottajat sen näkevät. Samoin on niukasti tietoa siitä, paljonko vauvaperhetyön tuottaminen maksaa. Tutkimustehtävinä olivat: Millaisena tukena vauvaperhetyö ilmeni keskosten äideille? Millaiset olivat vauvaperhetyön kustannukset sairaalalle ja miten siihen osallistuminen vaikutti keskosten ensimmäisen elinvuoden hoitokustannuksiin? Tutkimus toteutettiin retrospektiivisena arviointitutkimuksena. Tutkimusjoukko koostui vuosina 1996?1998 Itä- ja Pohjois-Suomen alueilla hoidetuista keskosista (≤ 32 vk). Kaikille keskosille annettiin tavanomainen hoito, jonka lisäksi interventioryhmän keskoset osallistuivat vauvaperhetyöhön. Aineistot koottiin vuosina 1998?1999. Vauvaperhetyön sisällöllisistä piirteistä koottiin tietoa kahden äitiryhmän teemahaastattelulla. Ensimmäisen aineiston äidit (N = 17) kuvailivat keskosten hoitoa kotona. Toisen aineiston äidit (N = 7) kuvailivat vauvaperhetyön sisältöä. Haastatteluaineistot analysoitiin aineisto- ja teorialähtöisellä sisällönanalyysilla. Jälkimmäisen luokittelurunko rakentui sosiaalisen tuen ominaispiirteiden mukaan. Vauvaperhetyön kustannusten arviointi perustui perhetyöntekijän palkkaan sekä kotikäyntien matka- ja aikakustannuksiin. Interventioon osallistumisen vaikutuksia hoitokustannuksiin arvioitiin vertailemalla interventio- (N = 18) ja verrokkiryhmän (N = 118) keskosten hoitokustannuksia. Tietoa koottiin vanhemmille suunnatulla kyselylomakkeella, sairaalan tiedostoista, potilasasiakirjoista ja perhetyöntekijän tiedostoista. Kustannukset laskettiin suorina ja epäsuorina yhteiskunnalle ja perheille aiheutuneina kustannuksina. Tulokset analysoitiin taulukkolaskennalla käyttäen kuvailevan tilastotieteen menetelmiä ja keskiarvotestejä. Aineistolähtöisen sisällönanalyysin mukaan keskosen äitiys oli erilaista äitiyttä, jota määritti keskosten hoidon asettamat vaatimukset ja äitien emootiot. Hoidon vaatimuksissa korostuivat päivittäisen hoidon, tiedon tarpeen ja erilaisen arjen asettamat tiedolliset ja taidolliset haasteet. äitien emootiot sisälsivät keskosten terveydentilaan ja kehitykseen sekä äitiin itseensä liittyviä pelkoja, huolia ja syyllisyyden tunteita. Teorialähtöisen analyysin perusteella vauvaperhetyön keskeinen sisältö muodostui tilannekohtaisen, keskosten hoitoon sovelletun erityistiedon antamisesta sekä perhetyöntekijän saavutettavuudesta. Muita vauvaperhetyön antaman tuen muotoja olivat emotionaalinen, integroiva ja aktiivinen tuki. Vauvaperhetyön tuottaminen maksoi sairaalle keskimäärin 970 euroa lasta kohden. Vauvaperhetyöhön osallistuneiden interventioryhmän keskosten uusien hoitojaksojen ja perusterveydenhuollon kustannukset olivat verrokkien kustannuksia matalammat. Tulokset viittaavat siihen, että vauvaperhetyöllä voidaan vastata keskosten äitien tuen tarpeisiin lisäämättä merkittävästi hoitokustannuksia.

M.Cur. / The aim of the intensive care nurse is to give quality nursing to the critically ill surgical patient within the context of the family, as set out in her scope of practice. Various factors, however, affect the intensive care nurse's actions so that she does not achieve the aim. The persons close to the critically ill patient and the intensive care nurse form part of the patient's social external environment. Both of them are therefore important when facilitating health in the critically ill patient. The aim of this study is to explore and describe the experience of mutual interaction between the person close to the critically ill patient and the intensive care nurse and subsequently to create guidelines with regard to the intensive care nurse's handling of the person close to the critically ill patient during the patient's stay in an intensive care unit. The study is done by means of an exploratory, descriptive and contextual design by using the phenomenological method of interviewing. The participants were selected by purposive sampling according to selection criteria and represent various cultures. Nine persons close to the critically ill patient and six intensive care nurses comprised the participating population.

Text in English / In Swaziland, family nurse practitioners (FNPs) are professional nurses who have undergone preparation as general nurse, midwife and FNP. These nurses play an important role in the delivery of primary health care (PHC). Family nurse practice is an evolving concept introduced in Swaziland in 1979. It is a means of exploring nursing roles and primary health care services for deployment in under-served areas and to enable nurses to serve as the primary providers of health care services in clinics, health centres and in the outpatient departments of hospitals. Changing responsibilities within the health care setting require different skills and more knowledge. The expansion and extension of the nurses' role, including the techniques of diagnosing and treating, was a priority of the Ministry of Health and Social Welfare (MOH&SW) in Swaziland's five-year development plan for 1978-1983. It was regarded as a necessary component for raising the quality and effectiveness of PHC services. Some of the major and urgent challenges that confront FNPs today are the advent of the human immune virus/acquired immuno-deficiency syndrome (HIV/AIDS) scourge and the re-emergence of the tuberculosis epidemic. Both these health problems require proficient diagnosis and case management skills as well as new approaches. If FNPs are to remain relevant and to continue to provide quality services in spite of prevailing challenges, they have to engage in continuing education (CE). The main aim of this study was to investigate the perceptions of the FNP role, CE needs and issues relevant to the current practice of FNPs in Swaziland. A further aim was to establish a structure or framework for a CE programme that would contribute to the strengthening of CE for FNPs and identify enabling factors and barriers in the practice and education ofFNPs. Both quantitative and qualitative research methods were used for data collection. A survey was conducted to collect data from 5 7 FNPs and 11 nurse managers and nurse educators. The transcript from the questionnaires was subjected to quantitative-based content analysis. A total of thirty nurse managers, nurse educators and MOH&SW nurse executives participated in the focus group interviews. The collected data was subjected to qualitativebased content analysis. The findings identified the role of the FNP as manager, clinical practitioner, educator and researcher. The analyses highlighted the CE needs of FNPs, and the question of updating and upgrading the skills of practising FNPs. The identified enabling factors and barriers, although perceived as issues that are peripheral and auxiliary to the curriculum, appeared to have a strong bearing on programme planning. The findings from this study have implications for a structured CE programme for FNPs at the University of Swaziland. / Health Studies / D. Litt et Phil. (Nursing Sciences)

The purpose of this study was to explore the feasibility of using human patient simulation (HPS) to teach Type 1 diabetes (T1DM) management to grandparents of grandchildren with T1DM. Thirty grandparents (11 male, 19 female) of young grandchildren (aged 12 and under) with T1DM were recruited from an urban medical center. Experimental group (n = 14) grandparents received hands-on visual T1DM management education using an HPS intervention, and control group (n = 16) grandparents received similar education using a non-HPS intervention. Post-intervention, researchers interviewed twelve grandparents (50% HPS, 50% non-HPS) who scored highest and lowest on the Hypoglycemia Fear Survey. Using a mixed-method design, researchers integrated study instrument data and post-intervention interview data to describe grandparent’s experience learning T1DM management. Post-intervention, grandparent scores for knowledge, confidence, and fear showed no significant difference by group assignment, however, all grandparent scores showed improvement from Time 1 to Time 2. Grandparents described how taking part in T1DM education heightened their awareness of T1DM risks. GP T1DM knowledge gains aided GPs to make sense of T1DM risks. Newfound T1DM knowledge enhanced GP T1DM management confidence. Improved T1DM knowledge and confidence helped to defuse T1DM management fear. Although study instruments did not measure significant difference between grandparents who received the HPS intervention and those who did not, the consistency of larger HPS-taught grandparent score improvement is suggestive of a benefit for HPS.

Text in English / In Swaziland, family nurse practitioners (FNPs) are professional nurses who have undergone preparation as general nurse, midwife and FNP. These nurses play an important role in the delivery of primary health care (PHC). Family nurse practice is an evolving concept introduced in Swaziland in 1979. It is a means of exploring nursing roles and primary health care services for deployment in under-served areas and to enable nurses to serve as the primary providers of health care services in clinics, health centres and in the outpatient departments of hospitals. Changing responsibilities within the health care setting require different skills and more knowledge. The expansion and extension of the nurses' role, including the techniques of diagnosing and treating, was a priority of the Ministry of Health and Social Welfare (MOH&SW) in Swaziland's five-year development plan for 1978-1983. It was regarded as a necessary component for raising the quality and effectiveness of PHC services. Some of the major and urgent challenges that confront FNPs today are the advent of the human immune virus/acquired immuno-deficiency syndrome (HIV/AIDS) scourge and the re-emergence of the tuberculosis epidemic. Both these health problems require proficient diagnosis and case management skills as well as new approaches. If FNPs are to remain relevant and to continue to provide quality services in spite of prevailing challenges, they have to engage in continuing education (CE). The main aim of this study was to investigate the perceptions of the FNP role, CE needs and issues relevant to the current practice of FNPs in Swaziland. A further aim was to establish a structure or framework for a CE programme that would contribute to the strengthening of CE for FNPs and identify enabling factors and barriers in the practice and education ofFNPs. Both quantitative and qualitative research methods were used for data collection. A survey was conducted to collect data from 5 7 FNPs and 11 nurse managers and nurse educators. The transcript from the questionnaires was subjected to quantitative-based content analysis. A total of thirty nurse managers, nurse educators and MOH&SW nurse executives participated in the focus group interviews. The collected data was subjected to qualitativebased content analysis. The findings identified the role of the FNP as manager, clinical practitioner, educator and researcher. The analyses highlighted the CE needs of FNPs, and the question of updating and upgrading the skills of practising FNPs. The identified enabling factors and barriers, although perceived as issues that are peripheral and auxiliary to the curriculum, appeared to have a strong bearing on programme planning. The findings from this study have implications for a structured CE programme for FNPs at the University of Swaziland. / Health Studies / D. Litt et Phil. (Nursing Sciences)