Brain tumours are the second most common malignancy in childhood and account for approximately 20% of all childhood cancers. Children diagnosed with a primary brain tumour are at risk of significant morbidity. Measurement of quality of life (QOL) and health status (HS) are important in quantifying morbidity and identifying strategies to provide relevant support for patients. We aimed to: (1) Measure QOL and HS, using the PedsQL and HUI3 in children with brain tumours one, six and twelve months after diagnosis. (2) Compare QOL and HS with “normal” matched controls, and assess the relationship between parent- and self-report QOL and HS. (3) Identify determinants of overall QOL one year after diagnosis. A total of 45 patients and 43 controls were recruited to the study, with 37 patients and 42 controls and 27 patients and 31 controls eligible for comparison of QOL using parent-report and self-report PedsQL respectively. Thirty-five patients were eligible for analysis of determinants of parent-report and 26 for self-report QOL one year after diagnosis. There were 29 patients and 29 controls, and 21 patients and 22 controls eligible for comparison of HS between patients and controls using the parent-report and selfreport HUI3 respectively, one year after diagnosis. In addition, 29 and 21 patients were eligible for analysis of determinants of parent- and self-reported HS one year after diagnosis. Children with a primary brain tumour have significantly lower QOL/ HS in the first year after diagnosis than normal controls. QOL/ HS improved significantly over time, most notably in the six months after diagnosis. For patients, agreement between parent- and self-report was variable, with greater agreement for the more observable (physical), compared with less observable (psychosocial) domains. Agreement between parent- and self-report was better using the HUI3 than the PedsQL. Parents of patients rated their children's HRQL lower than their child did, while for controls this was reversed. Selective attention one month after diagnosis and infratentorial tumour site are most important in predicting both parent- and self-report overall QOL at 1 year after diagnosis. Larger multi-centre, prospective studies are needed to confirm these findings. Cognitive remediation and/ or pharmacological intervention, particularly aimed at children with infratentorial tumours may improve attention and subsequently QOL, and both merit further investigation. THE CLIC SARGENT BRAIN TUMOUR STUDY The study on QOL and its determinants as reported in this thesis was undertaken as part of a prospective longitudinal multidisciplinary study led by Dr Peta Sharples (Consultant Paediatric Neurologist) and Dr Stephen Lowis (Consultant Paediatric Oncologist), with support from Dr Renee McCarter (Consultant Neuropsychologist), Professor Mike Stevens (Professor of Paediatric Oncology), Dr Andrew Curran (Senior Registrar in Paediatric Neurology), Dr Linda Hunt (Senior Lecturer in Medical Statistics) and Mr Robert Shortman (Assistant Psychologist). The overall aim of the study was to investigate, in detail, the effects of childhood brain tumour on the child and family. More specifically, it was intended to investigate the effect of primary brain tumours on cognitive, neurological, behavioural and functional outcome by comparing children presenting with CNS tumours with matched normal controls. In addition, the study sought to assess the effect of the diagnosis and treatment on the primary carer’s emotional status, family functioning and other family variables. Assessments were to be undertaken at an early stage (within 1 month of diagnosis) and at 6 and 12 months thereafter with the intention that the findings would define the early rehabilitation needs and rate of recovery of this patient population. In collaboration with supervisors, particularly Dr. Sharples, the author of this thesis, after reviewing the literature on QOS in children diagnosed and treated for a primary intracranial tumour made the decision to use QOL as the primary outcome measure and dependent variable. During the study, the importance of assessment of the relationship between parent- and child-reported QOL using both the PedsQL and HUI3 became clear, and self- report HUI3, in addition to the PedsQL, was incorporated into the study and became an important theme of two of the papers submitted in support of the author’s thesis and the thesis itself. In addition to the contribution to the direction of the study, as mentioned above, the PhD applicant’s role in the study were (1) to recruit all patients and controls; (2) to collect, score and enter data relating to quality of life, behavioural/emotional functioning, neurological and physical outcome and family structure and function in patients, controls and their families; (3) to undertake preliminary data analysis for presentation at local, national and international meetings, and publication of results in the form of the four papers submitted in support of the PhD, Integrated Format; (4) to collate the data and divide it for publication in its current form; (5) to write and act as corresponding author for the four papers submitted in support of the PhD. Details of collection, handling and statistical analysis of data are covered below. For the purpose of this manuscript, only data used in the papers submitted in support of the author’s PhD are referred to, not other data arising from study.

Thesis (M.S.)--Brigham Young University. Dept. of Recreation Management and Youth Leadership, 2005. / Includes bibliographical references.

Thesis (M. S.)--Oklahoma State University, 2005. / Vita. Includes bibliographical references (p.31-34).

Alkohol är ett vanligt berusningsmedel i Sverige. Tidigare forskning har visat att familj och vänner påverkar ungdomars alkoholkonsumtion. Studiens syfte var att undersöka ungdomars upplevelse av vad som påverkade deras alkoholkonsumtion samt om skillnader fanns mellan landsbygd och stad. Den teoretiska utgångspunkten i undersökningen var Bronfenbrenners ekologiska modell. Metoden som användes var berättelser där ungdomar skrev om en situation där de druckit alkohol eller avstått samt öppna enkätfrågor. Deltagarna kom från två gymnasieskolor och var i åldrarna 15-20 år. Totalt 96 personer medverkade varav 68 tjejer. Resultatet visade att fest, vänner, eget beslut och resor var de faktorer som påverkade mest. På landsbygden påverkades ungdomarna mer av familj och släkt. I staden upplevde många det som jobbigt att vara ensam om att vara nykter. De vanligaste orsakerna att avstå från alkohol var dåliga erfarenheter, inget behov och roligt utan. Överlag hade ungdomar på landsbygden en mer avslappnad syn till alkoholkonsumtionen.

Thesis (Ph. D.)--University of Washington, 1994. / Vita. Includes bibliographical references (leaves [193]-200).

Thesis (Ph. D.)--University of Washington, 1997. / Vita. Includes bibliographical references (leaves [103]-116).

Background: When the patient is critically ill the family is in a vulnerable position. The nurse's role is to support and help the family to find meaning in the difficult situation and to provide realistic hope. Balancing between the patient's and the family's needs is difficult. Knowledge about how nurses experience difficulties in the interaction with family is required in order to grant good care too critically ill patients and their family-members. Aim: To describe nurses' perceived difficulties in the interaction with family-members of critically ill patients. Method: The study is a qualitative literature-based study based on qualitative research. Results: The analysis resulted in four main themes; difficult disunion, environmental constraints, interpersonal difficulties and communicative difficulties. Conflicts, disagreement and expectations in the interaction with family-members are difficult. There are environmental constraints in the form of family's presence, lack of space and time constraints. Nurses find it difficult to manage their emotions, family who get to close and to support the family. Information, comprehension, knowledge, language barriers and cultural differences represents communicative difficulties. Conclusion: There is a lack of knowledge among nurses about how to handle difficult situations where family is involved. Doctors and nurses need to collaborate more. Conflicts, disagreements and expectations can put severe pressure on the nurse. It is difficult for the nurse to strike a balance between being professional and being personal. Environmental constraints are an organizational problem which creates difficulties for the nurse in the interaction with family.

Introdução: A intensa revolução tecnológica, associada ao crescimento demográfico da população idosa tem resultado no processo de exclusão digital destes, que possuem dificuldades em se adaptar ao atual contexto tecnológico. Como estratégia para promoção da saúde do idoso, os princípios da gerontotecnologia podem ser utilizados, e o computador e o telefone celular têm proporcionado maior independência e participação na vida social e familiar. Objetivo: Analisar a influência de TIC nas relações intergeracionais de idosos. Materiais e métodos: Trata-se de uma pesquisa exploratória, descritiva, do tipo transversal, com enfoque quantitativo-qualitativa. A amostra de conveniência foi composta por 160 sujeitos, especificamente 80 idosos participantes de programas de inclusão digital, 40 idosos não participantes de programas de inclusão digital e 40 familiares. Os sujeitos participantes da pesquisa residiam nas cidades de Uberaba (MG) e Ribeirão Preto (SP). Os procedimentos de coleta de dados incluíram Questionário Sócio-Demográfico Auto-Respondido para Aplicação com Idosos, Escala de Avaliação das Atividades Instrumentais da Vida Diária de Lawton e Brody e Questionários estruturados sobre as TIC. Os dados foram analisados através da técnica de análise de conteúdo do tipo temática e estatística descritiva com auxílio do programa EPI-Info. Resultados: Quanto à caracterização da amostra, a média de idade dos idosos foi de 68,8 anos, 70,8% é do sexo feminino, 55% têm acima de 8 anos de estudo, 65% é casado, 57,5% é aposentado e 84, 7% das mulheres e 62,9% dos homens possuem independência funcional. Quanto à utilização dos recursos eletrônicos, constatou-se que 100% e 33,4% dos idosos utilizam o telefone celular e o computador em suas relações, respectivamente. As finalidades de utilização destes equipamentos estão voltadas para possibilitar as relações sociais, a comunicação frequente com familiares e a manutenção das relações de afeto e de amizade. Os idosos relataram a necessidade de habilidades cognitivas e sensoriais para utilização das TIC em suas relações familiares, e 67,5% dos familiares dos idosos acreditam que os recursos tecnológicos podem auxiliar a suprir a presença física, 67,5%, proporcionar maior independência e autonomia para que o idoso se relacione com seus familiares e se ambiente com os assuntos cotidianos e 67,5% para ampliar a comunicação com outras pessoas da família. Discussão: Percebeu-se que os idosos utilizam as TIC nas relações intergeracionais para estabelecer a comunicação com seus familiares, sendo que os recursos tecnológicos utilizados podem promover o relacionamento interpessoal e intergeracional e participação na vida dos familiares. Conclusão: Acredita-se que as TIC exerçam uma influência positiva nas relações intergeracionais dos idosos e que o domínio destes recursos tecnológicos no cotidiano tende a favorecer o sentimento de autoeficácia dos sujeitos e consequentemente a sua auto-estima, ampliando a participação destes nesta sociedade tecnológica e permitindo novos papéis sociais e a experiência de que continua fazendo parte da sociedade. / Introduction: The intense technological revolution associated with the population growth of the elderly population has resulted in the process of digital exclusion of these, which have difficulties in adapting to the current technological context. As a strategy to promote the health of the elderly, the principles of gerontotecnology can be used and the computer and cell phone have provided greater independence and participation in social and family life. Objective: To analyze the influence of ICT in intergenerational relationships of older people. Materials and methods: This was an exploratory, descriptive, cross-sectional study with qualitative-quantitative approach. The convenience sample consisted of 160 subjects, 80 elderly participants specifically for digital inclusion programs, 40 subjects participating in digital inclusion programs and 40 family members. The participants of the survey were living in the cities of Uberaba (MG) and Ribeirão Preto (SP) . The procedures for data collection included Socio-Demographic Questionnaire Application for Auto-Answer with Elderly, Scale Evaluation of Instrumental Activities of Daily Living of Lawton and Brody and Structured questionnaires on ICT. Data were analyzed by analysis technique thematic content and descriptive statistics using the program Epi- Info. Results: Regarding the characterization of the sample, the average age was 68.8 years old, 70.8 % are female, 55 % have over 8 years of schooling, 65 % are married, 57.5 % is retired and 84, 7 % of women and 62.9 % of men have functional independence. Regarding the use of electronic resources, it was found that 100 % and 33.4 % of the elderly use cell phone and computer in their relationships, respectively. The purpose of using these devices are aimed at enabling social relations, frequent communication with families and the maintenance of relationships of affection and friendship. The elderly reported the need for cognitive and sensory skills for use of ICT in their family relationships, of families and 67.5 % of seniors believe that technological resources can help meet the physical presence, 67.5 %, providing greater independence and autonomy for the elderly relates to your family and the environment with everyday issues and 67.5 % to expand communication with other family members. Discussion: It was noticed that the elderly use TIC in intergenerational relationships to establish communication with their families, and the technological resources used can promote interpersonal and intergenerational participation in the life of the family. Conclusion: It is believed that TIC exerts a positive influence on intergenerational relationships of older people and that the domain of these technological resources in daily life tends to foster feelings of self-efficacy of the subjects and consequently their self -esteem, expanding their participation in this technological society and enabling new social roles and experience that remains part of society.

A política de saúde mental preconiza a diminuição da oferta de leitos psiquiátricos e a criação de serviços na comunidade deslocando a responsabilidade pelo seguimento do tratamento da doença mental das equipes hospitalares para as equipes comunitárias, o doente mental e seus familiares. Pacientes com transtornos mentais e seus familiares vivenciam momentos cíclicos de controle e diminuição sobre situações problema, as quais podem ou não resultar em internação psiquiátrica. A família passa a ser a principal provedora de cuidados e apoio aos pacientes psiquiátricos, no meio extra-hospitalar, fator este que pode gerar sobrecarga na família.A sobrecarga familiar é definida como \"um estado psicológico que advém da combinação de trabalho físico, emocional e pressão social\". O período pós a alta hospitalar pode gerar a família grande impacto que ao longo do tempo se modifica. O presente estudo tem como objetivo descrever e comparar a sobrecarga objetiva e subjetiva do familiar cuidador de pacientes no primeiro mês de alta hospitalar e após três meses deste período. Método - Foi aplicada a escala FBIS-BR nos neste primeiros mês e após três meses deste período. Foram entrevistados 26 familiares de pacientes que realizavam seguimento em um serviço de saúde mental ambulatorial na cidade de Ribeirão Preto. Os dados foram analisados através de freqüência e porcentagem e o teste não paramétrico de Wilcoxon-teste t- foi aplicado para identificar os itens da FIBS-BR que se destacaram na sobrecarga familiar. Resultados e discussão:.Os familiares dos 63 pacientes que compareceram as consultas foram convidados a participar do estudos e destes somente 26 aceitaram participar .Os pacientes desta amostra são em sua maioria homens, casados e completaram o ensino fundamental .Com relação aos cuidadores a maioria eram mulheres e mães com média de idade de 51 anos .Os participantes deste estudo são pertencentes a classe social mais baixa. Os diagnósticos mais prevalentes no estudo foram dos seguintes agrupamentos: \"Esquizofrenia, transtornos esquizotípicos,Transtornos delirantes e Transtornos de Humor\" .Os resultados demonstraram que a sobrecarga objetiva destaca-se da subjetiva nos dois momentos analisados. Indicando que os familiares são sobrecarregados com atividades de cuidado do doente, porém não se sentem prejudicados por isso. Possivelmente este resultado indica que os familiares preferem responder que não se incomodam porque entendem que é sua obrigação cuidar do familiar.A sobrecarga do cuidado objetiva e subjetiva diminuiu do primeiro para o terceiro mês e três aspectos podem explicar este resultado : 1- Paciente ainda com sintomas da doença no primeiro mês após a alta hospitalar 2- Readaptação da família após três meses de alta hospitalar; 3- Estratégia de visitas domiciliares pela equipe de saúde. Considerações Finais: Este estudo aponta para a importância e necessidade de acompanhamento dos pacientes egressos e seus familiares. A visita domiciliar é uma estratégia importante pois consegue manter um vinculo mais estreito entre o doentes, sua família e o serviços de saúde mental. A visita domiciliar é parte das atividades do enfermeiro sendo portanto, um dos profissionais da equipe que pode contribuir muito para melhorar as condições de doentes e famílias. / The mental health policy calls for the reduced supply of psychiatric beds and the creation of services in the community by shifting responsibility for monitoring the treatment of mental illness of hospital staff to community teams, the mentally ill and their families. Patients with mental disorders and their families experience moments cyclic control and reduction of problem situations, which may or may not result in psychiatric hospitalization. The family becomes the primary provider of care and support to psychiatric patients in the middle-ofhospital, a factor that can lead to overload in the family. The family burden is defined as \"a psychological state that arises from the combination of physical work, emotional and social pressure\". The post hospital discharge to the family can generate great impact over time changes. The present study aims to describe and compare the objective and subjective burden of family caregivers of patients in the first month of hospital discharge and after three months of this period. Method - was applied FBIS-BR scale in this first month and after three months of this period. Were interviewed 26 relatives of patients who were performing a follow-up outpatient mental health services in Ribeirão Preto. Data were analyzed using frequency and percentage and the nonparametric Wilcoxon t-test was used to identify items of FIBS-BR that stood out in the family burden. Results and discussion: The relatives of 63 patients who attended the consultations were invited to participate in these studies and only 26 agreed to participate. The patients in this sample are mostly male, married and completed their primary education. With respect to most caregivers were women and mothers with an average age of 51 years. The participants in this study are belonging to lower social class. The most prevalent diagnosis in the study were the following groupings: \"Schizophrenia, schizotypal disorder, delusional disorders and mood disorders\". The results showed that the overhead lens stands out in two moments of subjective analysis. Indicating that family members are overwhelmed with patient care activities, but do not feel harmed by it. Possibly this result indicates that family members prefer to answer that do not bother because they understand that it is his duty to take care of the family. The burden of care objectively and subjectively decreased from first to third month and three aspects may explain this result: 1 - The patient has symptoms of the disease in the first month after hospital discharge; 2 Hospital - Rehabilitation of the family after three months of hospital discharge; 3 - Strategy of home visits by health teams. Final Thoughts: This study highlights the importance and necessity of patient follow up graduates and their families. The home visit is an important strategy because it can maintain a closer link between the patient, his family and mental health services. The home visit is part of the activities of nurses and therefore, a team of professionals that can do much to improve conditions for patients and families.

A proposição deste estudo se configura em dois momentos, a princípio, descrever a experiência de familiares de portadores de esquizofrenia no primeiro episódio psicótico e, em um segundo instante, compreender como é o cotidiano destes familiares. Com o intuito de salientar e analisar a realidade social de uma determinada população, sendo esta permeada por uma infinidade de significações, optamos pela utilização dos pressupostos do método qualitativo. Para tanto, nos baseamos no estudo de caso, que fornece de forma aprofundada, o conhecimento de uma instância singular.Os colaboradores do presente estudo foram quatro famílias que possuíam um de seus membros vinculados a um serviço aberto do interior paulista, CAPS-II e, estes últimos, consistiam em portadores de esquizofrenia por um período de no máximo cinco anos. Para a coleta de dados foram realizadas entrevistas semi-estruturadas, sendo estas gravadas e posteriormente, transcritas pelo próprio pesquisador. Após a construção de um conjunto de categorias descritivas, a análise dos dados permitiu a identificação de cinco temáticas relacionadas ao convívio de familiares durante o primeiro episódio psicótico, sendo elas: a família frente ao primeiro episódio psicótico, trajetória percorrida durante o adoecimento; razões e dificuldades em aceitar o “adoecer psíquico"; preocupação com o trabalho e a ociosidade e o cotidiano dos portadores de esquizofrenia e familiares. Foi possível constatar no decorrer deste estudo que familiares nesta situação atravessam momentos difíceis, dolorosos, conflitantes mas mesmo assim, seus depoimentos ainda são permeados por forte esperança na remissão dos sintomas clássicos da esquizofrenia e que suas vidas “retornarão" à normalidade. Entretanto, para amenizar as dificuldades relatadas por estes núcleos familiares faz-se necessário maior investimento na equipe multiprofissional que compõem os serviços de saúde tidos como “portas de entrada", como é o caso do hospital geral, por este constituir no primeiro local de acesso, como também, a criação de novas estratégias no atendimento desta população nos serviços abertos. / The purpose of this study configures at two moments, at first, describe the experience of familiar of carriers of schizophrenia in first psychotic episode and, in a second instant, understand the daily of these families. With intention to point out and to analyze the social reality of one determined population, being this an infinity of significances, we opt to the use of the estimated ones of the qualitative method. For in such a way, on we base them on the case study that it supplies of deepened form, the collaborating singular. The knowledge of an instance of the present study they had been four families whom one of its entailed members to an open service of the São Paulo, Caps II, these last ones, consisted of carriers of schizophrenia for a period of in the maximum five years. For the collection of data recorded and later, transcribing ones for the proper researcher had been carried through half-structuralized interviews, being these. After the construction of a set of descriptive categories, the analysis of the related data allowed the identification of five thematic ones to the conviviality of familiar during the first psychotic episode, being they: the family front to the first psychotic episode, trajectory covered during the disturbance; reasons and difficulties in accepting “the psychic disorder" concern with the work and the idleness and the daily one of the familiar carriers of schizophrenia and. It was possible to evidence in elapsing of this study that the family in this situation crosses difficult moments, painful, conflicting but exactly thus, its depositions still are strong hope in the remission of the classic symptoms of the schizophrenia and that its lives "will return" to normality. However, to brighten up the difficulties told for these familiar nuclei one becomes necessary greaters investments in the professionals of general hospitals, because its to constitute in the first place of access, as also, the creation of new strategies in the attendance of this population in the open services.