The consequences of sleep disordered breathing (SDB) in women are fatigue, morning headaches, insomnia, depression, low functional status, daytime sleepiness, mood disturbances, and poor neuro-behavioural performance. Women appear to be more symptomatic at lower disease severity than men. When CPAP is prescribed, women use it less than men, they reduce their usage within the first week of treatment, and they discontinue it more than men. There is a need to understand the factors influencing CPAP therapy uptake and usage in women to meaningfully address their needs. The purpose of this qualitative evidence synthesis was to identify and synthesize the factors influencing the uptake and use of CPAP in women by conducting a qualitative evidence synthesis guided by the Bargaining and Balancing Life with CPAP theory for content, and the Theoretical Domains Framework for data analysis. Twenty-one studies were included. Barrier domains were Skills, Emotions, Social/Professional Role and Identity, and Beliefs about Capabilities, while facilitator domains were Reinforcement, Social Influences, Goals, and Optimism. Seven themes emerged : 1) Expectations about CPAP, 2) Learning to use my CPAP machine, 3) The burden of the technology, 4) Improvement of SDB symptoms, 5) Not feeling (or looking) like myself, 6) Receiving support, and 7) Choosing my attitude. To ensure appropriate and meaningful SDB care for women, practices must be based on knowledge relevant to women with SDB. Findings from this thesis can inform the design and development of interventions to support women with CPAP therapy uptake and usage. Research on this topic is urgently needed because there was no study eligible with a sample comprised of women only.

As time keeps on passing, diagnosing a child with Autism keeps on expanding. The research study focuses on gathering data on the impact of mothers that have a child diagnosed on the Autism Spectrum Disorder (ASD). The members chose were from an online all mothers support group. The study was gathered utilizing the post positive approach. After fulfillment of the research the members will be able to view the results of this study by going to the California State University San Bernardino scholar works website. This research was conducted to share information to clinicians and any reader on the day by day battles and difficulties mothers face by caring for a child diagnosed with Autism.

Esta tese objetiva compreender os modos pelos quais jovens soropositivos/as (des)aprendem a tornar-se pessoas que vivem com HIV/aids. Especificamente, esta tese visa a entender como estes/as jovens organizam e planejam suas vidas a partir do diagnóstico soropositivo e como lidam com os efeitos da soropositividade em seus corpos. Os campos teóricos que fundamentam a pesquisa – estudos de gênero e sexualidade, educação em saúde, estudos foucaultianos e estudos culturais pós-estruturalistas, com ênfase em trabalhos voltados para as discussões sobre juventudes – oferecem ferramentas para refletir sobre as formas pelas quais jovens que vivem com HIV aprendem a lidar com os atravessamentos da soropositividade nas suas vidas. O material empírico analisado na tese foi produzido a partir de entrevistas narrativas on-line, realizadas em programas de comunicação instantânea via internet, com 16 jovens soropositivos/as. O material empírico foi organizado e dividido em três eixos de análise: a soropositividade como processo educativo; corpo; e projetos de vida. Tal movimento analítico possibilita descrever e problematizar alguns dos efeitos da soropositividade na vida desses/as jovens: adesão ao tratamento; mudanças corporais; revelação do diagnóstico para familiares, amigos/as e parceiros/as sexuais e afetivos/as; necessidade de usar preservativo em todas as relações sexuais; prescrições clínicas de diversas ordens; planejamentos e projetos de vida e de futuro. Argumenta-se na tese que os/as jovens que vivem com HIV/aids são interpelados/as por diversas instâncias – entre as quais estão os serviços de saúde, as famílias e as escolas – a cuidarem de si e a se responsabilizarem por si mesmos e por seus parceiros e parceiras; por essa razão, desenvolvem diversas estratégias para aderir e resistir a essas instâncias, aprendendo, assim, a tornar-se pessoas que vivem com HIV/aids. / This thesis aims to understand how young seropositive people (un)learn to become people living with HIV/aids. Specifically, this thesis aims to understand how these young people organize and plan their lives after the HIV/aids diagnosis and how they deal with the effects of seropositivity on their bodies. The theoretical fields on which the thesis is based - gender and sexuality studies, health education, foucaultian studies and post-structuralist cultural studies, with emphasis on research about youths - offer tools to reflect on the way young seropositive people learn to deal with the circumstances of seropositivity in their lives. The empirical material analyzed in the thesis was produced from online narrative interviews conducted through instant messaging programs with 16 seropositive young people. The empirical material was organized and divided into three analytical categories: seropositivity as an educational process; body; and life projects. The analytical categories permit a description and discussion of the effects of seropositivity on the lives of these people including: treatment adherence; body changes; diagnosis disclosure to relatives, friends, affective and sexual partners; the necessity of using condoms in every sexual relation; clinical prescriptions of many kinds; plannings and life and future projects. It is argued that young seropositive people are challenged by several social institutions - such as health services, family and school - to take care of and be responsible for themselves and their partners. It further argues that, within this context, they develop several strategies to adhere and resist these institutions, thereby learning to become people living with HIV/aids.

Made available in DSpace on 2014-06-11T19:29:05Z (GMT). No. of bitstreams: 0 Previous issue date: 2013-04-25Bitstream added on 2014-06-13T18:38:42Z : No. of bitstreams: 1 pellegrino_la_me_botfm.pdf: 2258976 bytes, checksum: 13535dd0280b816f0448e374b34401b8 (MD5) / Paralisia cerebral (PC) descreve um grupo de anormalidades permanentes do desenvolvimento, do movimento e da postura, causando limitação da atividade, que são atribuídas a um distúrbio não progressivo que ocorreu no cérebro em desenvolvimento do feto ou do bebê. As alterações motoras da paralisia cerebral são frequentemente acompanhadas de distúrbios da sensação, percepção, cognição, comunicação, comportamento e por problemas musculoesqueléticos secundários1. A paralisia cerebral está entre as causas mais comuns de incapacidade crônica na infância, com uma incidência entre 2 e 2,5 por 1000 nascidos vivos nos países desenvolvidos 2-4. Embora a lesão cerebral primária seja não-progressiva, a patologia é permanente e muitas das manifestações clínicas, incluindo as consequências musculoesqueléticas, são adquiridas e progressivas com o tempo. Entre 25% e 35% dessas crianças são gravemente comprometidas e apresentam dificuldades com suas atividades da vida diária (AVD), comunicação, mobilidade, e consequentemente com sua saúde, e por isso são dependentes de seus cuidadores para a maioria das suas necessidades. Essas condições têm um impacto significativo durante toda a vida dessas crianças, de seus cuidadores e familiares, e para as instituições responsáveis pelos seus cuidados e bem estar 5-7 / The consideration of quality of life related to health is crucial for planning and maintaining a system of patient-centered care. Until recently there have been no sutiable instruments to assess health related quality of life (HRQoL) of children and adolescents with severe, non-ambulant cerebral palsy (GMFCS functional levels IV and V). The “Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire” (CPCHILD©) was developed in English specifically for this population, and has been validated in Canada. The aim of this study was to translate and adapt the CPCHILD© Questionnaire into Portuguese of Brazil, allowing researchers in Brazil to have this important tool in measuring health related quality of life in this population, besides the possibility of comparison with other studies that used the same questionnaire in other languages. The cross-cultural adaptation included two forward and back translations by independent translators, an assessment of the two versions by an expert committee, and the development of a pre-final version which was tested on 30 caregivers of children (5 -18) with severe CP (GMFCS IV & V). The caregivers’ comments about the pre-final version were assessed by the expert committee and incorporated in the development of the final version. Despite the relative equivalence between the two translations, some items required adaptations for the synthesized version. Certain modifications were necessary in the pre-final version to achieve idiomatic equivalence. The modifications accounted for the socioeconomic and cultural levels of the target population. Following the pre-test, we modified language that was difficult to understand, and certain items were adapted for the final version

Esta tese objetiva compreender os modos pelos quais jovens soropositivos/as (des)aprendem a tornar-se pessoas que vivem com HIV/aids. Especificamente, esta tese visa a entender como estes/as jovens organizam e planejam suas vidas a partir do diagnóstico soropositivo e como lidam com os efeitos da soropositividade em seus corpos. Os campos teóricos que fundamentam a pesquisa – estudos de gênero e sexualidade, educação em saúde, estudos foucaultianos e estudos culturais pós-estruturalistas, com ênfase em trabalhos voltados para as discussões sobre juventudes – oferecem ferramentas para refletir sobre as formas pelas quais jovens que vivem com HIV aprendem a lidar com os atravessamentos da soropositividade nas suas vidas. O material empírico analisado na tese foi produzido a partir de entrevistas narrativas on-line, realizadas em programas de comunicação instantânea via internet, com 16 jovens soropositivos/as. O material empírico foi organizado e dividido em três eixos de análise: a soropositividade como processo educativo; corpo; e projetos de vida. Tal movimento analítico possibilita descrever e problematizar alguns dos efeitos da soropositividade na vida desses/as jovens: adesão ao tratamento; mudanças corporais; revelação do diagnóstico para familiares, amigos/as e parceiros/as sexuais e afetivos/as; necessidade de usar preservativo em todas as relações sexuais; prescrições clínicas de diversas ordens; planejamentos e projetos de vida e de futuro. Argumenta-se na tese que os/as jovens que vivem com HIV/aids são interpelados/as por diversas instâncias – entre as quais estão os serviços de saúde, as famílias e as escolas – a cuidarem de si e a se responsabilizarem por si mesmos e por seus parceiros e parceiras; por essa razão, desenvolvem diversas estratégias para aderir e resistir a essas instâncias, aprendendo, assim, a tornar-se pessoas que vivem com HIV/aids. / This thesis aims to understand how young seropositive people (un)learn to become people living with HIV/aids. Specifically, this thesis aims to understand how these young people organize and plan their lives after the HIV/aids diagnosis and how they deal with the effects of seropositivity on their bodies. The theoretical fields on which the thesis is based - gender and sexuality studies, health education, foucaultian studies and post-structuralist cultural studies, with emphasis on research about youths - offer tools to reflect on the way young seropositive people learn to deal with the circumstances of seropositivity in their lives. The empirical material analyzed in the thesis was produced from online narrative interviews conducted through instant messaging programs with 16 seropositive young people. The empirical material was organized and divided into three analytical categories: seropositivity as an educational process; body; and life projects. The analytical categories permit a description and discussion of the effects of seropositivity on the lives of these people including: treatment adherence; body changes; diagnosis disclosure to relatives, friends, affective and sexual partners; the necessity of using condoms in every sexual relation; clinical prescriptions of many kinds; plannings and life and future projects. It is argued that young seropositive people are challenged by several social institutions - such as health services, family and school - to take care of and be responsible for themselves and their partners. It further argues that, within this context, they develop several strategies to adhere and resist these institutions, thereby learning to become people living with HIV/aids.

Esta tese objetiva compreender os modos pelos quais jovens soropositivos/as (des)aprendem a tornar-se pessoas que vivem com HIV/aids. Especificamente, esta tese visa a entender como estes/as jovens organizam e planejam suas vidas a partir do diagnóstico soropositivo e como lidam com os efeitos da soropositividade em seus corpos. Os campos teóricos que fundamentam a pesquisa – estudos de gênero e sexualidade, educação em saúde, estudos foucaultianos e estudos culturais pós-estruturalistas, com ênfase em trabalhos voltados para as discussões sobre juventudes – oferecem ferramentas para refletir sobre as formas pelas quais jovens que vivem com HIV aprendem a lidar com os atravessamentos da soropositividade nas suas vidas. O material empírico analisado na tese foi produzido a partir de entrevistas narrativas on-line, realizadas em programas de comunicação instantânea via internet, com 16 jovens soropositivos/as. O material empírico foi organizado e dividido em três eixos de análise: a soropositividade como processo educativo; corpo; e projetos de vida. Tal movimento analítico possibilita descrever e problematizar alguns dos efeitos da soropositividade na vida desses/as jovens: adesão ao tratamento; mudanças corporais; revelação do diagnóstico para familiares, amigos/as e parceiros/as sexuais e afetivos/as; necessidade de usar preservativo em todas as relações sexuais; prescrições clínicas de diversas ordens; planejamentos e projetos de vida e de futuro. Argumenta-se na tese que os/as jovens que vivem com HIV/aids são interpelados/as por diversas instâncias – entre as quais estão os serviços de saúde, as famílias e as escolas – a cuidarem de si e a se responsabilizarem por si mesmos e por seus parceiros e parceiras; por essa razão, desenvolvem diversas estratégias para aderir e resistir a essas instâncias, aprendendo, assim, a tornar-se pessoas que vivem com HIV/aids. / This thesis aims to understand how young seropositive people (un)learn to become people living with HIV/aids. Specifically, this thesis aims to understand how these young people organize and plan their lives after the HIV/aids diagnosis and how they deal with the effects of seropositivity on their bodies. The theoretical fields on which the thesis is based - gender and sexuality studies, health education, foucaultian studies and post-structuralist cultural studies, with emphasis on research about youths - offer tools to reflect on the way young seropositive people learn to deal with the circumstances of seropositivity in their lives. The empirical material analyzed in the thesis was produced from online narrative interviews conducted through instant messaging programs with 16 seropositive young people. The empirical material was organized and divided into three analytical categories: seropositivity as an educational process; body; and life projects. The analytical categories permit a description and discussion of the effects of seropositivity on the lives of these people including: treatment adherence; body changes; diagnosis disclosure to relatives, friends, affective and sexual partners; the necessity of using condoms in every sexual relation; clinical prescriptions of many kinds; plannings and life and future projects. It is argued that young seropositive people are challenged by several social institutions - such as health services, family and school - to take care of and be responsible for themselves and their partners. It further argues that, within this context, they develop several strategies to adhere and resist these institutions, thereby learning to become people living with HIV/aids.

Orientador: Erika Veruska Paiva Ortolan / Banca: Mauro Volpi / Banca: Dionisia Aparecida Cusin Lamônica / Resumo: Paralisia cerebral (PC) descreve um grupo de anormalidades permanentes do desenvolvimento, do movimento e da postura, causando limitação da atividade, que são atribuídas a um distúrbio não progressivo que ocorreu no cérebro em desenvolvimento do feto ou do bebê. As alterações motoras da paralisia cerebral são frequentemente acompanhadas de distúrbios da sensação, percepção, cognição, comunicação, comportamento e por problemas musculoesqueléticos secundários1. A paralisia cerebral está entre as causas mais comuns de incapacidade crônica na infância, com uma incidência entre 2 e 2,5 por 1000 nascidos vivos nos países desenvolvidos 2-4. Embora a lesão cerebral primária seja não-progressiva, a patologia é permanente e muitas das manifestações clínicas, incluindo as consequências musculoesqueléticas, são adquiridas e progressivas com o tempo. Entre 25% e 35% dessas crianças são gravemente comprometidas e apresentam dificuldades com suas atividades da vida diária (AVD), comunicação, mobilidade, e consequentemente com sua saúde, e por isso são dependentes de seus cuidadores para a maioria das suas necessidades. Essas condições têm um impacto significativo durante toda a vida dessas crianças, de seus cuidadores e familiares, e para as instituições responsáveis pelos seus cuidados e bem estar 5-7 / Abstract: The consideration of quality of life related to health is crucial for planning and maintaining a system of patient-centered care. Until recently there have been no sutiable instruments to assess health related quality of life (HRQoL) of children and adolescents with severe, non-ambulant cerebral palsy (GMFCS functional levels IV and V). The "Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire" (CPCHILD©) was developed in English specifically for this population, and has been validated in Canada. The aim of this study was to translate and adapt the CPCHILD© Questionnaire into Portuguese of Brazil, allowing researchers in Brazil to have this important tool in measuring health related quality of life in this population, besides the possibility of comparison with other studies that used the same questionnaire in other languages. The cross-cultural adaptation included two forward and back translations by independent translators, an assessment of the two versions by an expert committee, and the development of a pre-final version which was tested on 30 caregivers of children (5 -18) with severe CP (GMFCS IV & V). The caregivers' comments about the pre-final version were assessed by the expert committee and incorporated in the development of the final version. Despite the relative equivalence between the two translations, some items required adaptations for the synthesized version. Certain modifications were necessary in the pre-final version to achieve idiomatic equivalence. The modifications accounted for the socioeconomic and cultural levels of the target population. Following the pre-test, we modified language that was difficult to understand, and certain items were adapted for the final version / Mestre

The aim of this study was to increase the knowledge about if and how the National Value System’s goal of a life with dignity for the elderly pervades the work in home care organisations. The study was based on a qualitative research method and was conducted through interviews with professional care givers in home care organisations, there were five individual interviews and one pair interview. The background for this study was the National Value System for the eldercare that was introduced in 2011. The theory of New Public Management and the concept of Rationality of Caring were used to analyse the result. New Public Management introduces a strategy of competition tendering by signing deals with the company that give the best offer, in order to increase the quality and efficiency of organisations. An important part of New Public Management is that the leaders in organisations have control of what is happening in the organisation in order to further increase the quality and efficiency. The Rationality of Caring is about having the care recipients’ needs and wishes as a primary force of action. The study shows that professional care givers work in a way that promotes a life with dignity for the elderly and that they act with a rationality of caring, but the rationality that rules the organisations in which they work precludes their way of working. The Politicians definition of rationality, which is about the efficiency and quality that can be measured, is the one that is prioritized. It also shows that the organisation priorities small time-consumption and standardized services in order to increase the efficiency. It is found that the professional caregivers perceive that the demand for documentation and other administrative tasks has increased and as a result of this the elderly does not receive the time they have been granted.

No description available.

<p> </p><p>A person with borderline personality disorder, which is a mental illness, can be described as emotionally instable. As a relative of a person with borderline personality disorder one often feels a sense of despair, anxiety and fear. The essay’s purpose was to get an understanding of what it means to be a relative of a person with borderline personality disorder. We wanted to see the relative’s relationship from two perspectives, both from the relative’s perspective and from the professional’s perspective. The essay was a qualitative study with a phenomenological approach. The results were structured into five themes. These were: Growing up, To be diagnosed, Life with borderline, The present, and The future. The results were analyzed against coping. A qualitative analysis was conducted. The results showed that life as a relative of a person with borderline personality disorder in many cases can be stressful. For example, they adapted their own life very much. Blame from the healthcare system and from the surrounding environment seemed to be a prominent feature of the family.</p><p> </p> / <p> </p><p>En person med borderline personlighetsstörning, som är en psykisk sjukdom, kan beskrivas som emotionell instabil. Som anhörig till en person med borderline personlighetsstörning kan man känna oro, rädsla och förtvivlan. Uppsatsens syfte var att få förståelse för hur det är att vara anhörig till en person med borderline personlighetsstörning. Anhörigskapet studeras från två perspektiv: dels från anhörigas och dels från professionellas. Uppsatsen var en kvalitativ studie och hade en fenomenologisk ansats. Resultatet strukturerades i fem teman: Uppväxt, Att få diagnosen, Livet med borderline, Nutid och Framtid. Resultatet analyserades mot copingbegreppet. En kvalitativ analys genomfördes. Resultatet visade att livet som anhörig till en person med borderline personlighetsstörning i många fall kan vara påfrestande då de till exempel fick anpassa sitt eget liv. Skuldbeläggande från sjukvården och från omgivningen verkade vara en återkommande erfarenhet.</p><p> </p>