Hydrocephalus is a disease frequently mentioned in literature, but, the caregivers‟ knowledge about the disease is not well assessed. To characterize the caregivers of hydrocephalus patients; identify the fonts of formation to assume activities how to care; to verify caregivers‟ knowledge about hydrocephalus; to relate the caregiver‟ knowledge and level of child complications. Descriptive, exploratory and quantitative study, using a standardized interview technique. The survey was performed with caregivers at Aracaju University Hospital between November 2007 and August 2008. Fifty-four caregivers answered the interview. The mean age was 27.3 ± 7 years, with absolute predominance of females. There was a positive correlation on the number that they had left to work to be caregivers. Twenty-five caregivers (46.3%) received information about how to care and 53.7% learned to take care by themselves. The education level of the caregiver had a significant effect on the knowledge about definition, causes, complications, surgery and the shunt objectives. The knowledge about complications and surgery was significantly bigger in caregivers of children with sequels (P=0.003). The caregivers received little professional information. The education level of the caregiver had a positive correlation to on increased knowledge. Caregivers of children with sequels were related to on increased knowledge about important aspects on hydrocephalus. / A hidrocefalia é uma situação muito relatada na literatura, no entanto, pouco se tem discutido sobre os saberes dos cuidadores de crianças com hidrocefalia. Caracterizar cuidadores de crianças com hidrocefalia; identificar as fontes de formação de preparo para assumir os cuidados; verificar o conhecimento dos cuidadores sobre aspectos importantes da hidrocefalia; verificar a relação entre o conhecimento do cuidador e a presença de sequelas na criança. Estudo descritivo, exploratório, sob abordagem quantitativa, utilizando a técnica da entrevista padronizada, com cuidadores atendidos no ambulatório de um hospital universitário da cidade de Aracaju no período de novembro de 2007 a agosto de 2008. A amostra foi composta por 54 crianças e seus cuidadores. A média da idade do cuidador foi 27,3 ± 7 anos, com predomínio absoluto do gênero feminino. Observou-se um efeito significativo sobre o número das que deixaram de trabalhar para ser cuidadora. Vinte e cinco cuidadoras (46,3%) receberam orientações e 53,7% aprenderam a cuidar sozinhas. Houve relação significativa entre a escolaridade do cuidador e maior conhecimento de definição e causas da hidrocefalia, complicações, objetivo da cirurgia e finalidade da derivação ventricular. O conhecimento sobre o objetivo da cirurgia e complicações cirúrgicas foi significativamente maior em cuidadores de crianças com seqüelas (P=0,003). As cuidadoras receberam pouca orientação profissional. A escolaridade do cuidador foi significativa para maior conhecimento. Cuidadoras de crianças com seqüelas apresentam maior conhecimento sobre aspectos importantes da hidrocefalia.

Submitted by Luciana Ferreira (lucgeral@gmail.com) on 2015-01-13T10:43:49Z No. of bitstreams: 2 license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Dissertação - Isabela Cristine Ferreira Fernandes - 2014.pdf: 1136345 bytes, checksum: 8d8ea7ac3affa062a804ad3590110a4b (MD5) / Approved for entry into archive by Luciana Ferreira (lucgeral@gmail.com) on 2015-01-13T10:45:46Z (GMT) No. of bitstreams: 2 license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Dissertação - Isabela Cristine Ferreira Fernandes - 2014.pdf: 1136345 bytes, checksum: 8d8ea7ac3affa062a804ad3590110a4b (MD5) / Made available in DSpace on 2015-01-13T10:45:46Z (GMT). No. of bitstreams: 2 license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Dissertação - Isabela Cristine Ferreira Fernandes - 2014.pdf: 1136345 bytes, checksum: 8d8ea7ac3affa062a804ad3590110a4b (MD5) Previous issue date: 2014-03-12 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / INTRODUCTION: chronic diseases, especially asthma, are of complex treatment, requiring adaptation and modification of lifestyle habits of own asthmatic and their caregivers. Thus, it becomes essential to prioritize not only information and clinical care, but also aspects related to the subjectivity involved in the disease process and also its influence on quality of life of this people. OBJECTIVE: to evaluate the quality of life of caregivers of asthmatic children and adolescents accompanied in a specialized outpatient care. METHODS: cross-sectional, descriptive study with a quantitative approach, performed in outpatient clinic for asthmatic childhood in a public teaching hospital in the city of Goiania, Goias, Brasil. Data collection was conducted through a questionnaire containing questions related to social , economic and demographic aspects and the generic quality of life instrument for World Health Organization Quality of Life - Bref (WHOQOL-Bref). Cronbach's alpha ranged from 0,63 to 0,85, implying good instrument reliability. RESULTS: the study population consisted of 89 caregivers, with the youngest aged 23 and the oldest 60 years. Predominantly, mothers (85,4%) who had other children besides the asthmatic (72,9%), with a steady partner (65,2%) residing outside the metropolitan area of Goiania (53,9%), with secondary or higher education (62,9%), monthly personal income up to the minimum wage (57,3%), monthly family income between two and three minimum wages (65,2%) and belonging to Catholicism (47,2%). The majority of caregivers (64,0%) considered to have a good perception of quality of life and expressed satisfaction with their health. The median scores of the WHOQOL-Bref were higher in Psychological (70,83) and Social Relations (66,67) domains and the lower scores were obtained from the Environment (56,25) and Physical domains (60,71). Regarding potential factors associated with quality of life scores, it was concluded that there was a relationship with the following variables: bond caregiver, caregiver's age, number of children and schooling. CONCLUSION: this study allowed identifying the dimensions of life of caregivers that are affected, emphasizing the need to establish new strategies for quality care for these patients. In this context, we highlight the role of health professionals, who need to be able to provide humanized care and collaborate in awareness and autonomy of the care process. / INTRODUÇÃO: as doenças crônicas, em especial a asma, são de tratamento complexo, exigindo adaptação e modificação dos hábitos de vida do próprio asmático e de seus cuidadores. Sendo assim, torna-se fundamental não priorizar somente informações e cuidados clínicos, mas também aspectos relacionados à subjetividade que envolve o processo de adoecimento e também sua influência na qualidade de vida das pessoas. OBJETIVO: avaliar a qualidade de vida dos cuidadores de crianças e adolescentes asmáticos em atendimento ambulatorial especializado. METODOLOGIA: estudo transversal, descritivo, com caráter quantitativo, realizado no ambulatório especializado de asma infantil de um hospital público de ensino do município de Goiânia, Goiás, Brasil. A coleta de dados foi realizada por meio da aplicação de um questionário contendo questões relacionadas a aspectos sociais, econômicos e demográficos e do instrumento genérico de qualidade de vida World Health Organization Quality of Life - Bref (WHOQOL-Bref). O alfa de Cronbach variou entre 0,63 e 0,85, inferindo uma boa confiabilidade do instrumento. RESULTADOS: a população do estudo foi composta por 89 cuidadores, sendo o mais jovem com 23 anos e o mais velho com 60 anos. Predominantemente, mães (85,4%), que possuíam outros filhos além do asmático (72,9%), com companheiro fixo (65,2%), residentes fora da região metropolitana de Goiânia (53,9%), com ensino médio ou superior (62,9%), renda pessoal mensal de até um salário mínimo (57,3%), renda familiar mensal entre dois e três salários mínimos (65,2%) e, pertencentes ao catolicismo (47,2%). A maioria dos cuidadores (64,0%) considerou ter uma boa percepção de qualidade de vida e expressou satisfação com a própria saúde. As medianas dos escores do WHOQOL-Bref foram maiores nos domínios Psicológico (70,83) e Relações Sociais (66,67) e, os menores escores foram obtidos dos domínios Meio Ambiente (56,25) e Físico (60,71). Em relação aos potenciais fatores associados aos escores de qualidade de vida, concluiu-se que houve relação com as seguintes variáveis: vínculo do cuidador, faixa etária do cuidador, número de filhos e escolaridade. CONCLUSÃO: esse estudo permitiu identificar as dimensões da qualidade de vida dos cuidadores que estão afetadas, ressaltando a necessidade de se estabelecer novas estratégias de assistência qualificada a essa clientela. Nesse contexto, destaca-se o papel dos profissionais de saúde, que precisam estar aptos a prestar uma assistência humanizada e colaborar no processo de conscientização e autonomia do cuidado.

Ser cuidador informal de pacientes com doenças crônicas pode implicar em sobrecarga e sofrimento psicológico significativo, potencialmente prejudiciais para a própria saúde física e mental e para a recuperação do paciente. Pouco se sabe sobre as experiências e características psicossociais dos cuidadores de pacientes portadores de Cardioversor Desfibrilador Implantável (CDI), principalmente na população brasileira, de forma que o presente estudo (quantitativo descritivo transversal) teve por objetivos caracterizar demográfica e psicossocialmente uma amostra não probabilística de cuidadores informais de pacientes portadores de CDI que se encontravam em tratamento médico em um hospital-escola do interior do Estado de São Paulo. As variáveis estudadas incluíram: características sóciodemográficas, qualidade de vida, ansiedade, depressão e percepção de sobrecarga. Participaram da pesquisa 60 cuidadores, entrevistados entre setembro de 2010 a maio de 2011. Para a coleta dos dados foram usados: Roteiro de Entrevista Semiestruturada, elaborado para esta pesquisa, Questionário de Avaliação de Saúde SF-36, Escala Hospitalar de Ansiedade e Depressão e a Zarit Burden Interview. Os dados foram analisados quantitativamente de forma descritiva. Posteriormente verificou-se associação estatisticamente significativa (p<=0,05) entre algumas variáveis de interesse, por meio do Teste Exato de Fisher. Os resultados mostraram que a média de idade dos cuidadores foi de 52,5 anos (DP=14,76), eram em sua maior parte do sexo feminino (n=45, 75%), o cônjuge do(a) paciente (n=39, 65%), com escolaridade predominante de até quatro anos (n=28, 46,67%), sendo a maioria (45, 75%) portadora de problemas de saúde. Vinte e cinco cuidadores (41,67%) apresentaram sintomas indicativos de ansiedade e 13 (21,67%) de depressão. Na avaliação da qualidade de vida, a média de escore mais elevado foi no domínio Aspectos Sociais (Média=78,12, DP=27,48) e o mais baixo em Vitalidade (Média=60,25, DP=26,03). O escore médio relacionado à percepção de sobrecarga foi de 19,93 (DP=12,51, Mediana= 18,5). Os participantes relataram alterações significativas em suas vidas após o implante do CDI, preocupações com a saúde do paciente e funcionamento do dispositivo, dificuldades relacionadas ao papel de cuidador, além de dúvidas sobre o desfibrilador implantável. Os resultados confirmaram que o implante do CDI no paciente impactou significativamente na vida de seus cuidadores informais, sendo necessário o oferecimento de apoio emocional e orientações específicas por parte dos profissionais da saúde para auxiliá-los na adaptação e enfrentamento adequado dessas situações. Dada a escassez de estudos brasileiros nesta população e alguns fatores metodológicos limitantes, é necessário que mais investigações sejam realizadas para comparar estes resultados. / Being an informal caregiver of patients with chronic diseases may imply significant psychological burden and suffering, potentially harmful to caregiver\'s own physical and mental health and patient\'s recovery. Little is known about the psychosocial experiences and characteristics of caregivers of patients with Implantable Cardioverter Defibrillator (ICD), mainly in the Brazilian population, so that the purpose of the present study (transversal descriptive quantitative) was to characterize, both demographically and psychosocially, a nonprobabilistic sample of informal caregivers of patients with ICD undergoing treatment in a university hospital in the interior of the State of São Paulo. The studied variables comprised: sociodemographic characteristics, life quality, anxiety, depression and perception of burden. Sixty caregivers took part in the survey, and they were interviewed between September, 2010 and May, 2011. Data collection used the following instruments: Semi-structured Interview Script prepared for this survey, SF-36 Health Evaluation Questionnaire, Hospital Anxiety and Depression Scale and the Zarit Burden Interview. Data was analyzed quantitatively in a descriptive way. Subsequently, statistically significant association (p<=0,05) was verified between some variables of interest through Fisher\'s Exact Test. Results describe that the average age of caregivers was 52.5 years (DP=14.76), they were mostly female (n=45, 75%), and patient\'s spouses (n=39, 65%), predominantly with up to four years of education (n=28, 46.67%), and most (45, 75%) with health problems. Twenty-five caregivers (41.67%) presented symptoms related to anxiety and 13 (21.67%) to depression. In life quality evaluation, the highest average score was in the Social Aspects dominion (Average=78.12, DP=27.48) and the lowest in Vitality (Average=60.25, DP=26.03). The average score regarding burden perception was of 19.93 (DP=12.51, Median= 18.5). Participants reported significant changes in their lives after ICD implant, concerns about patient\'s health and device operation, difficulties concerning their role as caregivers, in addition to doubts about the implantable defibrillator. Results confirm that the ICD implant had a significant impact in the life of their informal caregivers, requiring provision of emotional support by healthcare professionals in order to help them adapt and properly cope with these situations. Due to the scarcity of Brazilian studies in this population and some limiting methodological factors, further investigation is required to compare these results.

Submitted by isabela.moljf@hotmail.com (isabela.moljf@hotmail.com) on 2016-08-16T13:27:51Z No. of bitstreams: 1 beatrizdossantospereira.pdf: 3704904 bytes, checksum: 30a0537d5394d6cb609a69894efa6376 (MD5) / Approved for entry into archive by Adriana Oliveira (adriana.oliveira@ufjf.edu.br) on 2016-08-17T12:49:14Z (GMT) No. of bitstreams: 1 beatrizdossantospereira.pdf: 3704904 bytes, checksum: 30a0537d5394d6cb609a69894efa6376 (MD5) / Made available in DSpace on 2016-08-17T12:49:14Z (GMT). No. of bitstreams: 1 beatrizdossantospereira.pdf: 3704904 bytes, checksum: 30a0537d5394d6cb609a69894efa6376 (MD5) Previous issue date: 2016-06-29 / Introdução: No Brasil há um aumento da prevalência de doenças crônicas, constituindo atualmente um problema de Saúde Pública com grande demanda por parte dos serviços de saúde. Dentre estas, encontra-se a Doença Renal Crônica (DRC), com um acréscimo constante do número de pessoas em diálise, presença de altos índices de mortalidade e incapacidades crônicas. Estar em uma condição de doença crônica traz ao paciente sentimentos que, para sua elaboração, será fundamental o papel da equipe de saúde e do cuidador familiar principal. Percebe-se portanto, que assim como o paciente, a família é significativamente afetada pela DRC e por seu tratamento, pois terá que se adaptar à persistência de um quadro clínico que apresenta instabilidade e incertezas, com necessidades de cuidados permanentes, a custo de grande sobrecarga nos mais diversos aspectos de suas vidas. Nesse contexto, em que a família constitui um grupo de risco para o desenvolvimento de sintomas psicológicos (como estresse, depressão etc.), bem como de diversas enfermidades crônicas, muitas vezes provenientes da negligência com o autocuidado, se faz fundamental avaliar como ocorre a elaboração do processo de adoecimento nesse grupo, em seus mais variados aspectos, para que se possa traçar melhores estratégias de intervenção. Objetivo: avaliar a saúde mental de pacientes renais crônicos e seus cuidadores e sua associação com os sintomas de ansiedade, depressão, estresse, fadiga, suporte social e qualidade de vida, bem como com as características clínicas dos pacientes. Método: estudo transversal em 21 pacientes e seus cuidadores, no período de Janeiro a Setembro de 2015. Amostra por conveniência onde foram incluídos participantes com idade >18 anos, há no mínimo 6 meses de tratamento e cuidadores familiares. Foram avaliadas variáveis sociodemográficas, clínicas, laboratoriais e psicológicas. Realizada análise descritiva e a associação entre pacientes e cuidadores. Resultados: Dentre os pacientes foi observado 38,1% com sintomas indicativos de ansiedade e depressão. As médias de Suporte Social Prático foram de 3,15±0,77 e para Suporte Social Emocional 3,16±0,79. Com relação à Fadiga, 14,3% se declaram extremamente cansados e 14,3% declaram fazer todas as atividades que habitualmente faziam. Dos 57,1% que apresentavam estresse, 66,7% estavam na Fase de Resistência com predominância de sintomas psicológicos em 60,0% dos mesmos. O domínio Capacidade Funcional (CF) da Qualidade de Vida mostrou correlação com Hemoglobina (r=0,581, p=0,006) e pacientes não anêmicos apresentaram melhor CF (p=0,075). Nos cuidadores observou-se 33,3% com sintomas indicativos de ansiedade e depressão. No Suporte Social Prático obtiveram média de 2,88 ±0,77 e Suporte Social Emocional com 3,0±0,72. 14,3% relataram estar extremamente cansados e 28,8% afirmaram fazer quase todas as atividades que habitualmente faziam. Na comparação de ambos os grupos observa-se que apresentam resultados semelhantes quanto à presença de ansiedade e depressão e fadiga. Cuidadores recebem menos suporte social que pacientes. Ambos os grupos apresentam predominância semelhante de níveis de estresse, porém, pacientes apresentam maior predominância de sintomas psicológicos. Com relação à Qualidade de vida, nos Aspectos Sociais, Vitalidade, Saúde Mental e o grande Domínio Mental, pacientes e cuidadores apresentam resultados semelhantes. Conclui-se que a Saúde Mental de pacientes e cuidadores apresenta níveis semelhantes e ambos, no contexto da doença renal dialítica, devem obter intervenções específicas. / Introduction: To treat Chronic Kidney Disease (CKD) at the final stage, performance of Renal Replacement Therapies (RRT) is required, these require important changes in living habits and patients frequently need caregivers. These are risk groups for development of physical and psychological symptoms. Objective: evaluate predominance of anxiety, depression, stress, fatigue, social support and quality of life in patients with CKD and their caregivers. Method; cross study of 21 patients and their caregivers, during the period from January to September 2015. Sample according to convenience where patients over 18 years old were included, with at least 6 months of treatment and family member caregivers. Social, demographic, clinical, laboratory and psychological variables were evaluated. Descriptive analysis and association between patients and caregivers were performed. Results: Among patients we observed that 38.1% had symptoms that indicated anxiety and depression. Averages for Practical Social Support were 3.15±0,769 and for Emotional Social Support were 3.16±0,79. As for Fatigue, 14.3% of patients declare themselves extremely tired and 14.3% declared doing all activities they usually performed before. 57.1% presented stress, of these, 66.7% were at the Resistance Stage with predominance of psychological symptoms in 60.0%. The Quality of life domain of Functional Capacity (FC) presented a correlation with Hemoglobin (r=0.581, p=0.006) and non-anemic patients presented better FC. We observed symptoms that indicated anxiety and depression in 33.3% of caregivers. Caregivers obtained average of 2.88 ±0.77 for Practical Social Support and 3.0±0.72 for Emotional Social Support. 14.3% reported being extremely tired and 28.8% declared doing all activities they usually performed before. When comparing both groups we observed they present similar results for presence of anxiety, depression and fatigue. Caregivers receive less social support than patients. Both groups present similar predominance of stress levels, however, patients presented more predominance of psychological symptoms. For Quality of life, patients and caregivers presented similar results for Social Aspects, Vitality, Mental Health and the great Mental Domain. We concluded that Mental Health of patients and caregivers presents similar levels and both, within the context of dialysis renal disease must undergo specific interventions.

Orientador: Claudinei José Gomes Campos / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-18T19:37:16Z (GMT). No. of bitstreams: 1 Bueno_GiselliCristinaVillela_M.pdf: 1248064 bytes, checksum: 41025ac97f6190db0bc41ed7c8b46c9d (MD5) Previous issue date: 2011 / Resumo: Com o aumento da longevidade das crianças com cardiopatias congênitas, esta patologia torna-se crônica, e como tal, necessita de um cuidador, que na grande maioria das vezes, é a própria mãe para garantir cuidados específicos em relação à alimentação, atividade física e administração de medicamentos em domicílio. As crenças relacionadas à causa da doença e à manutenção do tratamento constituem parte da herança cultural da família; elas influenciam o modo pelo qual os cuidadores lidam com o problema de saúde e a maneira pela qual respondem aos profissionais de saúde. Alguns modelos teóricos apresentados na literatura dos últimos anos tentam explicar a adoção de determinados comportamentos, dentre eles, destaca-se o Modelo de Crenças em Saúde (MCS). Este trabalho estudou os significados e as crenças atribuídas pelos cuidadores ao tratamento de crianças com cardiopatias congênitas, utilizando o referencial teórico do MCS, desenvolvido por Rosenstock em 1966. Trata-se de um estudo de caso, realizado na unidade de internação de um Hospital Universitário do interior de São Paulo. Participou do estudo oito cuidadoras que acompanhavam crianças portadoras de qualquer tipo de cardiopatia congênita, com até 12 anos de idade incompletos. Foram realizadas entrevistas semidirigidas, gravadas e transcritas para análise dos dados. A escolha das cuidadoras seguiu a técnica de amostragem proposital e a delimitação da amostra se deu através da técnica de saturação teórica. A partir do estudo de cada categoria criada, utilizando a técnica de análise de conteúdo, surgiram outros temas pertinentes que foram divididos em subcategorias não apriorísticas. Os resultados mostraram que os cuidadores só conseguem perceber a doença quando ela se manifesta de alguma maneira; crianças que não apresentam sintomas e que conseguem realizar as atividades do cotidiano pertinentes a sua idade não são consideradas doentes. Os sentimentos de medo, desamparo e impotência emergiram nas falas, porém o medo da morte esteve mais presente nas entrevistas. O facilitador que se destacou durante o tratamento foi a importância que os cuidadores dão ao entendimento e cumprimento das orientações médicas e ao comparecimento às consultas. A fé permeou todas as entrevistas, ela dá força e sustentação para o cuidador acompanhar a criança, superando todas as barreiras para cumprir o tratamento adequadamente. Dentre as barreiras citadas, mas que não influenciaram no seguimento do tratamento destaca-se a ausência da participação do pai no tratamento do filho e as dificuldades de entendimento dos cuidados necessários à criança em domicílio. A falta de citação do enfermeiro nas falas das cuidadoras é um resultado preocupante e emerge discussões necessárias sobre o papel que o enfermeiro está exercendo nas instituições de saúde / Abstract: With increased longevity of children with congenital heart disease, this disease becomes chronic, and as such requires a caregiver, which in most cases, it is the mother to ensure special care in relation to food, activity physical and drug administration at home.The beliefs related to the cause of illness and maintenance treatment are part of the cultural heritage of the family, they influence the way caregivers deal with the health problem and the way they respond to health professionals. Some theoretical models presented in the literature of recent years have tried to explain the adoption of certain behaviors, among which stands out the Health Belief Model (HBM). This study examined the meanings and beliefs attributed by caregivers to treat children with congenital heart disease, using the theoretical framework of the HBM, developed by Rosenstock in 1966. This is a case study, conducted at the inpatient unit of a university hospital in Sao Paulo State. Participated in the study eight caregivers who accompanied children with any type of congenital heart disease, with up to 12 years old incomplete. Semi structured interviews were conducted, recorded and transcribed for data analysis. The choice of caregivers followed the purposive sampling technique and the delimitation of the sample was made through the technique of theoretical saturation. From the study of each category were using the technique of content analysis, there were other relevant issues that were not a priori divided into subcategories. Results showed that caregivers can only perceive the disease as it manifests itself in some way, children who have no symptoms and are able to perform everyday activities relevant to their age are not considered diseased. The feelings of fear, helplessness and powerlessness emerged in the interviews, but the fear of death was present in the interviews. The facilitator pointed out that during treatment was the importance that carers make to the understanding and compliance with medical advice and attend to queries. The faith permeated all the interviews, it gives strength and support for the caregiver accompany the child, overcoming all barriers to follow the treatment properly. Among the barriers identified, but no effect following the treatment there is the lack of father participation in child treatment and difficulties in understanding the necessary care to children in the household. The lack of citation in the speech of the nurse caring is a worrying outcome emerges and necessary discussions on the role that nurses are exercising at health institutions / Mestrado / Enfermagem e Trabalho / Mestre em Enfermagem

Caregivers while, the biggest providers of palliative care for terminally sick patients, are often neglected in the process of providing care, which inadvertently affects their overall health and well-being. This study aims to explore the experiences of the unmet needs of the caregivers in palliative care. The literature review is based on seven quantitative, four qualitative and one mixed methodology approach studies. Results show a shortage of information given to caregivers regarding disease progression, symptomatology, support services and financial services. Furthermore the themes of unmet needs that emerged are physical, psychological, emotional, social and spiritual needs. Caregivers also reported the shortage of standard services provided by healthcare sector.  A healthy relationship scenario, where caregivers are supported to look after themselves as well as their loved ones, would boost the support they render to the patients.  The provision of needed services to caregivers, nurses, and healthcare personnel is required to fulfill a healthy relationship and further develop it by learning from the caregivers’ experiences. In conclusion, effective communication between caregivers and care providers is found to be a prerequisite for building trust and could contribute to satisfy the informational, medical, social and spiritual needs while helping to decrease health strains of caregivers.

Bakgrund: Antalet personer med demenssjukdom ökar i världen. Demenssjukdom försämras progressivt och ger en dödlig utgång. God omvårdnad är den viktigaste åtgärden idag. Sjuksköterskan har det yttersta ansvaret för omvårdnaden och implementering av nya metoder. Tidigare studier påvisar att alternativa omvårdnadsåtgärder kan vara ett gott komplement till sedvanlig vård för patientgruppen. Det är tidigare känt att musik främjar hälsa hos människan.  Syfte: Att beskriva musikens betydelse i omvårdnaden av personer med demenssjukdom samt att granska hur musiken har använts i inkluderade artiklar.  Metod: En beskrivande litteraturstudie, baserad på 14 artiklar, totalt sju kvantitativa, fem kvalitativa samt två av mixad ansats.  Huvudresultat: Musik minskade beteendemässiga och psykiska symtom vid demens, var en källa till glädje och sinnesro. Mänsklig kontakt, interaktion och relation sågs stärkas. Musik hade en distraherande funktion och användes vid observation och bedömning av patientgruppen. Musik förmedlades individuellt eller i grupp av musikterapeuter, musiker och vårdare. Musiken förmedlades via CD-spelare, MP3-spelare, sång, konserter och musikterapi. Musiken var i form av bekanta sånger, professionellt utformad- eller individanpassad efter patientgruppen.  Slutsats: Musik i omvårdnaden av personer med demens sågs ha övervägande positiv betydelse. Kunskap kring musikens betydelse i omvårdnaden kan underlätta och förbättra demenssjukvården. Litteraturstudien kan tyda på att musik kan verka som ett gott komplement till sedvanlig vård. Musik tycktes ha positiv betydelse oberoende av hur musiken hade använts. Fortsatt forskning kring musikens betydelse i omvårdnad samt hur musiken har använts kan ses betydande för att utveckla demensvården. / The number of people with dementia increases in the world, is a progressive disease and gives a fatal outcome. The most important measure is to provide good care. The nurse's role includes the overall responsibility for the care and the implementation of new methods. Studies have shown that alternative care can be a good complement to ordinary care for this group of patients. In previous studies music has shown positive results in promoting health in humans.

Background: Today, approximately 160,000 people live with dementia in Sweden and globally, the number of affected people is approximately 50 million. Dementia is a collective name for a variety of brain diseases that occur from brain damage. As dementia often materializes gradually overtime, it tends to lead to a family member becoming the caregiver of the person who is sick. Aim: The aim of this literature study was to illustrate the experience of those caring for a relative with dementia as well as to describe the study groups in the included studies. Method: This study is a literature review with descriptive design consisting of twelve scientific articles with a qualitative approach. Main results: Becoming a caregiver to a relative with dementia was rarely a choice but it was a role in which the family member grows into. Many people experienced the role as a caregiver as complex and it was common to experience feelings of insecurity, isolation, fatigue and frustration. The approach and method for managing the disease differed significantly for each caregiver analyzed during this study, however humor, acceptance and religion were often employed as coping mechanisms. The result was compiled with seven subheadings: From family to family caregiver, Support in care, Insecurity, ignorance and difficult situations, More than a full time job, Loss and fear of the future, Coping strategies, and Methodological aspect – study groups. Conclusion: Being a family caregiver was a challenge to most people. Many have expressed the gravity of receiving both societal support and help from other family members to obtain relief within their role, but in spite of this, the caregiver often took the greater responsibility. Therefore, a critical change in the support is necessary to enable them to want, and be able, to continue to fulfill the important work they do. / Bakgrund: Idag lever omkring 160 000 personer med demenssjukdom i Sverige och globalt sett är antalet drabbade människor cirka 50 miljoner. Demenssjukdom är ett samlingsnamn för en rad olika typer av hjärnsjukdomar som uppkommer vid skador i hjärnan. Sjukdomen kommer ofta i ett smygande förlopp vilket leder till att det många gånger är den närstående som börjar ta hand om personen som drabbats.

Cette thèse interroge l’usage de la contention forte lors des soins en pédiatrie. Cette problématique soulève des questions philosophiques et éthiques qui s’inscrivent dans des pratiques quotidiennes de soins. Pourtant cette pratique, à laquelle se confronte fréquemment les soignants est relativement peu interrogée, voire banalisée.En effet, l’enfant effrayé ou douloureux peut se débattre et s’agiter au décours du soin et il arrive que plusieurs adultes le maintiennent pour poursuivre le geste. Un rapport de force s’installe alors entre soignants et enfant. Dans certains cas, la contrainte physique de l’enfant lors du soin s’apparente littéralement à de la violence. Le passage de l’usage légitime de la force à la violence illégitime n’est pas systématiquement identifié.Par ailleurs le fait de contraindre l’enfant de force confronte l’infirmier à un paradoxe : celui de faire mal à l’enfant pour son bien. Cela complique la perception de l’illégitimité de certaines contentions.Difficile voire impossible de renoncer à faire le soin et pourtant regrettable d’user de la contention forte à l’encontre d’un enfant malade. Une étude qualitative ancillaire à la réflexion philosophique été menée auprès de soignants de pédiatrie. L’objectif était d’interroger cette question du point de vue des soignants pour comprendre comment l’usage de la contention lors d’un soin en pédiatrie pouvait se transformer en un usage illégitime de la force. Les résultats de cette étude ont montré que la contention était une pratique laborieuse, source de malaise mais le plus souvent vécue comme inévitable et influencée par les habitudes de l’équipe d’appartenance. (Ces résultats sont en annexe de la thèse) Le « bien de l’enfant » justifiait le recours à la force. On assistait à une hiérarchisation déontologique où la réalisation du geste technique subordonne le respect du rythme de l’enfant. L’analyse de la parole des soignants a mis en évidence : empathie et attention des soignants à l’égard de l’enfant mais à l’évocation de la contention l’enfant disparaissait du discours. Un peu comme si l’enfant disparaissait du « radar émotionnel » du soignant, le temps de la contention. Le concept de « cécité empathique transitoire » a été proposé pour caractériser le phénomène qui se produit lors d’une contention forte.La thèse explore les raisons qui conduisent les adultes qui soignent à disqualifier le refus de l’enfant en proposant une forme de réhabilitation de la parole de celui-ci. Le travail s’organise autour de développement des regards et des points de vue qui tantôt masquent tantôt rendent visibles une partie de la réalité : celle de l’enfant et celle du soignant. Les soignants sont tels les prisonniers de la caverne, otages de leurs illusions. L’espoir de maitriser l’inconstance de l’existence par la grâce de la biotechnologie semble les contraindre à sacrifier leur propre subjectivité. L’arraisonnement de l’enfant mais aussi du soignant à la technique est au cœur du débat qui émerge de la réflexion. Au fil du travail, émerge l’idée d’un entre-deux des différences, qui pourrait être un nouvel espace conceptuel où les différences entre l’enfant et les soignants se rassemblent dans l’espace de la contingence. Cet entre-deux ouvre sur de nouveaux possibles, invite à devenir prudent. La prudence aristotélicienne comme disposition pratique apporte de nouvelles perspectives à cette problématique. L’invitation à la délibération dans les soins ouvre sur une proposition concrète de déploiement de la notion de care appliquée plus spécifiquement au champ de la pédiatrie. / From transitional empathic blindness to caution during care. About physical restraint during nursing care in pediatric wardsThis thesis questions the use of strong physical restraint during pediatric care. The issue raises philosophical and ethical questions falling within daily practices of nursing acts. However, this custom to which nurses are frequently exposed is rather seldom questioned or is routinized.A child who is scared or in pain can struggle or jitter during the care and it happens that serval adults retrain the child in order to finish the treatment. It is a real power struggle between the nurses and the child. Sometimes, the child’s physical restraint is similar to violence. The step from using reasonable strength to using unfounded violence is not automatically identified.Moreover, the nurse restraining a child strongly faces a paradox: hurting a child for his wellbeing. This complicates the perception of the illegitimacy of some restraints.It is difficult if not impossible to forgo the treatment, but it is nevertheless unfortunate to use physical restraint on a sick child. A qualitative research backed by a philosophical reflection has been conducted among pediatric nurses. The aim was to probe the issue from the nurses’ point of view in order to understand how the use of physical restraint during a treatment in pediatric wards could lead to the use of unfounded strength. The result of the research highlighted that restraint was an unpleasant, cumbersome practice, but that it was often experienced as unavoidable and governed by the team’s habits. (The results of the research can be found in appendix) The “child’s wellbeing” justified the use of strength, like a kind of ethical prioritization, where achieving the technical act subordinated the respect of the child’s rhythm. Analyzing the nurses’ comments highlighted their empathy and attention to the child, but when talking about restraint, the child was no longer mentioned. It seemed the child disappeared from the nurse’s “emotional radar” during a physical restraint. The idea of “transitional empathy blindness” was suggested to characterize the phenomenon occurring during a strong physical restraint.The thesis also explores the reasons leading the adults in charge of the care to disqualify the child’s refusal by offering a means to resume the dialog with the child. The work is structured around the evolution of the attitudes and opinions that sometimes conceal the child’s and the nurse’s reality and sometimes make it visible. Nurses are like prisoners in a cave, hostages of their own illusions. The hope of mastering the fickleness of life thanks to biotechnology seems to force them to sacrifice their own subjectivity. Trying to subjugate the child but also the nurse to the technical act is food for thought. Throughout the work, the idea of an in-between differences stands out. It could lead to a new concept where the differences between the child and the nurses could meet in case of contingency. This in-between opens new possibilities and encourages caution. As practical measure, Aristotle’s principle of caution develops a new insight regarding this issue. The possibility of discussing nursing practices leads to a concrete proposal to spread the notion of care more specifically in the field of pediatrics.

Magister Scientiae (Physiotherapy) - MSc(Physio) / Neural tube defects (NTDs) are the world‘s second most common birth defects after cardiovascular defects. In developing countries, poor access to health care services among children with NTDs contributes to early infant deaths, while those who survive live with severe disabilities. In Zambia, all children with NTDs in need of surgery are referred to Lusaka and physiotherapy services are not available in health facilities below the first level hospitals. The aim of the current study was to determine the profile of children with NTDs and to explore the experiences of mothers with accessing health care services for these children. The study which was conducted at the University Teaching Hospital (UTH) in Lusaka consisted of both quantitative and qualitative methods. The quantitative phase consisted of a retrospective record review of children with NTDs, who were admitted to UTH from January to December, 2010. A sample of 50 medical records was used based on available records, and data collection was done using a data extraction sheet which was specifically designed for the study. Analysis of quantitative data was done using Statistical Package for Social Science (SPSS) version 20.0. The qualitative phase had two parts, with the first part involving in-depth interviews with a purposefully selected sample of 20 mothers of children who were admitted to UTH. The second part used a sample of convenience of four mothers who had brought their children for follow up visits. All interviews were audiotaped, transcribed verbatim and translated, and recurring ideas were coded and collapsed into categories and themes. Permission to conduct the study was obtained from the UWC Research Grant and Study Leave Committee, University of Zambia Research Ethics Committee, and University Teaching Hospital management. Informed written consent was obtained from the mothers who accepted to take part in the study. Results from the record review revealed that the majority of children were from Lusaka province, with ages ranging from one day to 48 months and a male predominance of 58%. Myelomeningocele was the most common type of NTD (44%) with the lumbar region being the common site (52%). Hydrocephalus was present in 74% of children, 30% of children had both paraplegia and incontinence and 22% (n=11) of the files had no information on the neurological impairments. Wound infection was present in 40% (n=20) of the children. The majority (66%) of children were lost to follow up. Mothers of children who were admitted in UTH cited transport to UTH and back home as the main challenge. Other challenges included the lack of a prenatal diagnosis, the need for information, uncertainty about future of their children, and concerns about their family. Interviews with mothers on experiences with accessing physiotherapy services found that the lack of knowledge among mothers was the main reason children were not accessing physiotherapy services. Findings on access to health care were related to the ―Four A‘s‖ access theory which consists of four dimensions of access namely geographical accessibility, availability, affordability and acceptability. It is recommended that health care providers and policy makers ensure that all children with NTDs are provided with free transport to and from referral hospitals. Policy makers need to consider involving physiotherapists in out-reach programmes and mobile clinics to ensure access to physiotherapy services for all children in need of the service. Health care providers must also ensure that they give adequate information to mothers of children born with birth defects as this enhances their access to appropriate health care services.