731 resultados para Living with illness


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Tese (doutorado)—Universidade de Brasília, Instituto de Psicologia, Programa de Pós-Graduação em Processos de Desenvolvimento Humano e Saúde, 2016.

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Background Increasingly many perinatally HIV-infected children are surviving through adolescence and adulthood as a result of improvements in the management of paediatric HIV infection, particularly the increased use of combination therapy. It is usually the parents or guardians of these children who are faced with the task of informing the child living with HIV about his or her positive status. However, many parents—particularly biological parents —find this disclosure process difficult to initiate, and this study explored some of the difficulties that these parents encounter. Objective This study set out to explore potential factors that challenge parents and guardians when informing their perinatally HIV-infected child about the child’s HIV status. Design This was a qualitative narrative study that employed in-depth interviews with parents or guardians of children perinatally infected with HIV. A total of 20 parents and guardians of children who attend the outpatient HIV clinic at the Baylor College of Medicine-Abbott Fund Children’s Clinical Centre of Excellence (COE) in Lilongwe, Malawi were interviewed. Of these, 14 were biological parents and six were guardians. Results Guardians and parents expressed uneasiness and apprehension with the disclosure conversation, whether or not they had already told their child that he or she had HIV. Participants who had not told their children recounted that they had contemplated starting the conversation but could not gather enough courage to follow through with those thoughts. They cited the fear of robbing their child of the happiness of living without the knowledge of being positive, fear of making their own status known to more people, and fear of confrontation or creating enmity with their child as impediments to disclosing their child’s positive HIV status to him or her. Conclusions It is apparent that guardians—more particularly biological parents—of children perinatally infected by HIV find it difficult to inform their children about their children’s HIV status. From this disempowered position, parents dread the disclosure of a positive HIV status to a child as a psychosocial process that has the potential to disturb a family’s previously established equilibrium with threats of stigmatization, marginalization, and parent-child conflict. This calls for strategies that could support parents to make disclosure to the child less challenging.

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Dissertação de Mestrado apresentada ao Instituto Superior de Psicologia Aplicada para obtenção de grau de Mestre na especialidade de Psicologia Clínica.

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Background Aerobic endurance is an important aspect of physical fitness that enables individuals living with HIV to endure in the work place as well as in agricultural operations in order to earn a living and improve their quality of life. However, despite high HIV prevalence rates, the aerobic endurance status of young Malawians living with HIV remains unknown. The objective of this study was to determine the difference in VO2max between HIV-negative and HIV-positive individuals in Blantyre, Malawi. Methods Fifty five participants (17 males and 38 females) who have HIV and were not taking antiretroviral medication and 78 HIV-negative participants (45 males and 33 females) performed the Rockport submaximal treadmill exercise test. Measures of body weight, post-exercise heart rate and time to walk one mile were obtained and used to predict VO2max. Comparisons between groups were adjusted for age differences using analysis of covariance (ANCOVA). Results VO2max was significantly lower in HIV-positive subjects [31.1, 28.7 - 33.5mL.kg-1.min-1(mean, 95% CI)] compared with HIV-negative subjects [56.2, 54.3 - 58.1mL.kg-1.min-1]. Conclusion Aerobic endurance was markedly reduced in HIV-positive participants compared with HIV-negative participants. Findings of the current study implicate factors associated with the HIV infection as contributors to a decreased aerobic endurance in people living with HIV.

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Background The proportions of women of reproductive age living with the human immunodeficiency virus (HIV) vary between different regions of the world, with significantly higher proportions in sub-Saharan Africa. Family planning is one of the major issues that couples and families affected with HIV must confront. We aimed to assess the cultural and social factors associated with childbearing and family planning knowledge, decisionmaking, and practices among HIV-positive pregnant women attending antenatal clinic at a health centre in Balaka, Malawi. Methods This was a qualitative descriptive study carried out at Kalembo Health Centre in Balaka. A purposive sampling technique was used to select pregnant women enroled in the antiretroviral therapy (ART) programme. A sample size of thirty-five women was decided upon after data saturation. Qualitative inquiry was used during data collection. Data were analysed using systematic text condensation, while numbers and percentages were generated using Microsoft Excel. Results Out of 35 participants, 20 were aged between 25 and 34 years, and 18 had been married at least three times. All 35 women wished to have their own biological child. Factors, reported by participants, that promote childbearing included: the desire to please their husbands, fear of losing their husbands to others if they did not bear children, the knowledge that ART would help prevent their children from acquiring the virus, the desire to prove to others that they can also bear children, and a lack of family planning leading to unplanned pregnancies. Conclusions The factors that lead to pregnancies among women on ART in Balaka ranged from assured safety of the child from HIV, lack of contraception, to other factors related to their partners. The authors recognize and support the freedom for women to become pregnant and bear children, and, in the context of HIV infection, fertility and reproductive services should include a comprehensive approach towards addressing issues of HIV and AIDS and childbearing among infected women.

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Adolescence’s changes may become more pronounced when living with a chronic condition (CC). This study aims to examined the differences in satisfaction with family life, perception of school competence and “pressure with homework” of Portuguese adolescents’ 1) living with CC; 2) how living with CC affects school participation; taking into account age, gender and family socioeconomic status (SES). Five thousand fifty Portuguese adolescents (mean age 14 ± 1.85) of the Health Behaviour in School-aged Children (HBSC/WHO) were included. Results showed increased vulnerability in adolescents living with CC, presenting a lower satisfaction with family life and poor school outcomes. Younger boys, having a higher SES and not having CC are significantly associated with satisfaction with family life. Older girls, having a lower SES and living with CC were associated with more stress related to school work. Future interventions should include these features combined with ‘listening’ to adolescents and their needs, allowing their participation in the promotion of personal health.

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A construção social do gênero feminino em Moçambique está baseada na submissão ao homem, influenciando a vulnerabilidade de gênero à infecção pelo HIV. Objetivou-se analisar a percepção de pessoas vivendo com HIV/aids (PVHA) e de profissionais de saúde (PS), da cidade de Maputo, em relação à vulnerabilidade de gênero e infecção pelo HIV. Participaram 33 PVHA e 15 PS, selecionados por conveniência, mediante a realização de grupos focais e de entrevistas semiestruturadas. Dois eixos temáticos nortearam a análise: vulnerabilidade de gênero e práticas culturais tradicionais. A análise de conteúdo dos relatos verbais permitiu concluir que a vulnerabilidade feminina é maior, segundo a quase totalidade dos participantes, delineando categorias como submissão da mulher, dificuldade para negociar o uso do preservativo e influência das práticas culturais. O estudo possibilitou compreender melhor o contexto de vulnerabilidades que afetam cidadãos de Maputo, em especial as mulheres, em um país de prevalência elevada da epidemia. ____________________________________________________________________________________ ABSTRACT

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Living with quality is a growing concern of the old population. There is an increasing institutionalization of the elderly, and it is in this context that active aging programs assume relevance, allowing the elderly the contact with experiences that allow them to age with quality of life, by maintaining their autonomy and promoting their physical, mental and emotional well-being. This study aims to assess the quality of life of institutionalized elderly undergoing to an active aging program. Methods: We have developed a semi-experimental study that considers the quantitative methodology in which the following instruments were used to measure the quality of life: Eurohis-Qol-8 (Pereira, Melo, Gameiro, & Canavarro, 2011) and Whoqol-Old (Vilar et al., 2010), to which sociodemographic and clinical questions were added. Assessments were made in two different moments, before and after the intervention program, in a sample of 37 institutionalized elderly. Results: Concerning the assessment of quality of life related to health (Eurohis-Qol-8), significant higher scores were obtained in the second moment (p = 0.004). Regarding the quality of life related to the elderly significant better scores were also obtained in the second assessment (p = 0.001). Conclusions: The results obtained allow us to conclude that using either of the measuring scales of Eurohis-Qol-8 or Whoqol-old, there is a perceived improvement in quality of life in those using the active aging program. Thus, institutionalized elderly must be the main target in the design and implementation of active aging programs.

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The health of people living with HIV and AIDS (PLWHA) is nutritionally challenged in many nations of the world. The scourge has reduced socio-economic progress globally and more so in sub-Saharan Africa (SSA) where its impact has been compounded by poverty and food insecurity. Good nutrition with proper drug use improves the quality of life for those infected but it is not known how PLWHA exposed to chronic malnutrition and food shortages from developing nations adjust their nutrition with use of Anti-Retro-viral Drugs (ARVs). This study assessed nutritional status, dietary practices, and dietary management of common illnesses that hinder daily food intake by the patients and use of ARVs with food recommendations provided by the health care givers. A descriptive case study design was used to sample 120 HIV-infected patients using systematic sampling procedure. These patients sought health care from an urban slum, Kibera AMREF clinic. Data were collected by anthropometric measurements, bio-chemical analysis, semi-structured questionnaire and secondary data. The Statistical Package for Social Sciences (SPSS) and the Nutri-Survey software packages were used to analyze data. Dietary intakes of micro-nutrients were inadequate for >70% of the patients when compared to the Recommended Daily Requirements. When Body Mass Indices (BMI) were used, only 6.7% of the respondents were underweight (BMI<18.5kg/m2) and 9.2% were overweight (BMI> 25kg/m2), serum albumin test results (mean 3.34±0.06g/dl) showed 60.8% of the respondents were protein deficient and this was confirmed by low dietary protein intakes. The BMI was not related to dietary nutrient intakes, serum albumin and CD4 cell counts (p>0.05). It appeared that there was no significant difference in BMI readings at different categories of CD4 cell count (p>0.05) suggesting that the level of immunity did not affect weight gain with ARV as observed in many studies from developed countries. Malnutrition was, therefore, evident among the 60.8% of the cases as identified by serum albumin tests and food intake was not adequate (68%) for the patients as they ate once a day due to lack of food. National food and nutrition policy should incorporate food security boosting guidelines for the poor people infected with HIV and using ARVs.

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Dissertação (mestrado)—Universidade de Brasília, Faculdade de Ciências da Saúde, Programa de Pós-Graduação em Bioética, 2015.

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Artigo teórico: O presente artigo tem como objetivo permitir uma visão global sobre as circunstâncias que podem influenciar, positiva ou negativamente, a vida das crianças e apresentar programas desenhados para promover o seu correto desenvolvimento, mesmo em casos menos favoráveis. Para isto, são revistos os conceitos mais importantes associados às noções de risco, perigo, proteção e resiliência, sintetizadas as relações que estes estabelecem entre si e abordados quais os principais contextos nos quais o profissional pode intervir. Este trabalho foca-se principalmente nas crianças da cidade de Tijuana, pelo que é realizado um trabalho de comparação de estatísticas oficiais entre Portugal e México (quando aplicável, cingido ao estado da Baja Califórnia) de modo a contextualizar os diferentes perigos e proteções que as respetivas culturas providenciam. Para concluir, são apresentados alguns exemplos de intervenções recentes que visam promover a resiliência através de abordagens distintas e em contextos culturais diversos, de modo a deixar no leitor uma ideia das possibilidades e da importância da intervenção nesta área. Artigo teórico-prático: O presente artigo tem como objetivo avaliar o impacto de uma adaptação do programa “Ultrapassar Dificuldades e Vencer Desafios: Manual de Promoção da Resiliência na Adolescência” numa população de crianças em situação de risco, do 1.º ao 6.º ano de escolaridade, da cidade de Tijuana (Baja California, México). Foram realizadas intervenções com dois grupos de crianças que se encontravam em contexto familiar e com um grupo de crianças em contexto institucional. As sessões realizadas, que adaptaram o programa dando-lhe um enfoque psicomotor, compreenderam a duração total de 20 horas e foram realizadas nas instituições de ensino. A intervenção demonstrou ter alguns efeitos positivos ao nível da auto-perceção de competências relacionadas com a resiliência, bem como um efeito de diminuição de alguns fatores de riscos intra-individuais. Na ótica dos prestadores de cuidados, foram ainda encontrados resultados significativos ao nível da diminuição da hiperatividade, dos problemas de comportamento e do total de dificuldades (avaliados pelo instrumento Strenghts and Difficulties Questionnaire). Este programa apresenta assim resultados encorajadores, num contexto diferente ao que serviu de substrato para o desenho do programa, e reforça a noção de que as competências sociais e emocionais são vitais para o correto desenvolvimento infantil em qualquer cultura.

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Dissertação (mestrado)—Universidade de Brasília, Faculdade de Ciências da Saúde, Programa de Pós-Graduação em Bioética, 2016.

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Among people living with HIV (PLWH), adherence to antiretroviral therapy (ART) can be affected by problems of neurocognitive (NC) impairment, stress, alcohol and other drug (AOD) abuse, and other barriers. The aims of this research were to: (1) examine factors associated with NC impairment, (2) explore relationships between psychosocial variables with ART adherence and viral load (VL), and (3) evaluate the efficacy of an evidence-based intervention in improving ART adherence, increasing service utilization, and decreasing VL. The first study (n=370) was cross sectional and used structural equation modeling to test whether AOD use, years living with HIV, and time from HIV diagnosis to seeking care were associated with poorer NC functioning. The second study (n=246) used similar methods to test the hypothesis that stress, barriers to adherence, NC impairment, poor social support, and AOD use were related to lower VL mediated by ART adherence. The third study (n=243) evaluated an evidence-based, eight-session program to improve ART adherence, reduce VL, and increase service utilization in a randomized controlled trial. Study participants were PLWH living in South Florida, 18 to 60 years old, with a history of alcohol abuse enrolled from January 2009 through November 2012. Secondary analysis of available data showed: (1) scores on interference with executive functioning increased by 0.32 for each day of marijuana use and 1.18 for each year living with HIV, but no association was found between alcohol use and NC functioning; (2) each barrier to adherence was associated with a 10% decrease in adherence to ART and a 0.42 unit increase in VL (log10) and the relationship between barriers and VL was partially mediated by ART adherence; (3) participants in the evidence-based program were more likely than the comparison group to report an undetectable VL (OR=2.25, p Psychosocial factors affect VL, but ART adherence is essential in achieving an undetectable VL in PLWH.

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O diagnóstico de Cancro da Mama (CM) desencadeia uma crise na doente e no seu sistema familiar, levando a mudanças no seu modo de funcionamento. O presente estudo tem como objetivos analisar as mudanças percebidas, a curto e a longo prazo, na relação mãe-filhos e na parentalidade na sequência do diagnóstico de CM materno, bem como analisar de que forma “ser mãe” influenciou o modo como as pacientes lidaram com o CM. Foram entrevistadas 17 mulheres sobreviventes de CM com filhos dependentes no momento do diagnóstico através de uma entrevista semiestruturada. Os dados foram analisados segundo a Grounded Theory. Os resultados demonstraram que esta experiência desencadeia mudanças, temporárias e permanentes, nos padrões de funcionamento familiar. Perante as mudanças nos comportamentos dos filhos, as mães adotam novas estratégias para promover bem-estar nos descendentes. Após a família se conseguir descentrar da doença, as mulheres conseguem refletir sobre os contributos da vivência do CM na relação mãe-filhos. Clinicamente, estes resultados permitem conhecer as necessidades destas mães e apoiar a elaboração de programas de intervenção psicológica, capazes de responder a essas necessidades, salientando a importância de uma intervenção sistémica e que potencie a expressão emocional.

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Background: Adolescents with chronic disease (CD) can be more vulnerable to adverse psychosocial outcomes. This study aims: 1) to identify differences in psychosocial variables (health-related quality of life, psychosomatic complaints, resilience, self-regulation and social support) among adolescents who feel that CD affects or does not affect school/peers connectedness (measured by self-reported participation in school and social activities); and 2) to assess the extent to which psychosocial variables are associated with connectedness in school and peer domains. Methods: A cross-sectional study was conducted in 135 adolescents with CD (51.9% boys), average age of 14 ± 1. 5 years old (SD = 1.5). Socio-demographic, clinical, and psychosocial variables were assessed, using a self-reported questionnaire, which included the Chronic Conditions Short Questionnaire, KIDSCREEN-10 Index, Symptoms Check-List, Healthy Kids Resilience Assessment Module Scale, Adolescent Self-Regulatory Inventory, and Satisfaction with Social Support Scale. Descriptive statistics, GLM-Univariate ANCOVA and Logistic Regression were performed using the IBM Statistical Package for Social Sciences (SPSS), version 22.0. The significance level was set at p < 0.05. Results: Thirteen to eighteen percent of the adolescents felt that CD affected participation at school (PSCH) and participation in leisure time with friends (PLTF). These adolescents presented lower results for all psychosocial study variables, when compared with adolescents who did not feel affected in both areas of participation. From the studied psychosocial variables, the most important ones associated with PSCH (after controlling for age, gender, diagnosis, and education level of father/mother) were self-regulation and psychosomatic health. Concerning the PLTF, social support was the sole variable explaining such association. Conclusions: The present study pointed out the association between psychosocial variables; and living with a CD and school/peers connectedness. The need to focus on the assessment of the effects of a CD on adolescents’ lives and contexts is suggested, as well as on the identification of vulnerable adolescents. Such identification could help to facilitate the maximization of social participation of adolescents with CD, and to plan interventions centered on providing support and opportunities for a healthy youth development. For that purpose, a complex and multifactorial approach that includes clinicians, schools, family, and peers may be proposed.