731 resultados para Living with illness


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Within many communities in East Africa, people living with HIV are increasingly involved in delivering home-based care and healthcare for family members and peers. Such interdependent caring relations blur conventional boundaries between ‘care-givers’ and ‘care-recipients’, and constructions of 'service users' as dependent, passive recipients of healthcare. The participation of people living with HIV in healthcare provision, home-based care and peer support groups can enhance ‘relational autonomy’ for both care-givers and care-recipients, although such initiatives often play out in highly gendered ways. The care and support of people living with HIV, particularly the emotion work of caring, however, continues to be associated with women's and girls' assumed 'natural' nurturing roles and has been largely devalued and overlooked in HIV policy and practice to date.

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This paper what 'relaxed performances' are and how a growing number of theatres are beginning to offer them to families living with autism and other disabilities opportunities to attend without fear of alienation or rejection by other audience members. Using one small theatre as a case study, the chapter illustrates the sort of adaptations that are made to the performance and front of house arrangements and reports on the positive effects one particular relaxed performance had on some of those who attended.

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This paper examines how ‘relaxed performances’ are being offered by an increasing number of mainstream theatres so children with complex individual needs and their families can enjoy the social and cultural experience of live theatre. The paper explains the origins of the relaxed performance initiative, what such performances entail and how they can contribute to both children’s learning and the cause of social justice. A case study is made of how one medium sized provincial theatre offered a relaxed performance of its annual pantomime in the 2013-14 season and the impact its subsequent 2014-15 production has had on families living with autistic spectrum disorder.

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Recent research and policy have recognised the central role of unpaid care-givers (often women and girls) in the global South. Disability rights perspectives, however, challenge the language of ‘care’ and ‘dependence’. Drawing on qualitative research with women living with HIV and children caring for them in Tanzania, and on learning from the National Community of Women Living with HIV and AIDS in Uganda (NACWOLA), this paper explores the divergences and interconnections between the concepts and practices of care, disability and HIV in the context of East Africa. Despite the development of interdependent caring relations, both care-givers and people living with HIV in Tanzania experience ‘diminished autonomy’. The participation of people living with HIV, including disabled people, in home-based care and in peer support groups, however, can enhance ‘relational autonomy’ for both care-givers and care-recipients. We reflect on opportunities and challenges for mutual learning and cross-movement advocacy by disabled people, people living with HIV and care-givers.

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Introduction Human immunodeficiency virus (HIV) is a serious disease which can be associated with various activity limitations and participation restrictions. The aim of this paper was to describe how HIV affects the functioning and health of people within different environmental contexts, particularly with regard to access to medication. Method Four cross-sectional studies, three in South Africa and one in Brazil, had applied the International Classification of Functioning, Disability and Health (ICF) as a classification instrument to participants living with HIV. Each group was at a different stage of the disease. Only two groups had had continuing access to antiretroviral therapy. The existence of these descriptive sets enabled comparison of the disability experienced by people living with HIV at different stages of the disease and with differing access to antiretroviral therapy. Results Common problems experienced in all groups related to weight maintenance, with two-thirds of the sample reporting problems in this area. Mental functions presented the most problems in all groups, with sleep (50%, 92/185), energy and drive (45%, 83/185), and emotional functions (49%, 90/185) being the most affected. In those on long-term therapy, body image affected 93% (39/42) and was a major problem. The other groups reported pain as a problem, and those with limited access to treatment also reported mobility problems. Cardiopulmonary functions were affected in all groups. Conclusion Functional problems occurred in the areas of impairment and activity limitation in people at advanced stages of HIV, and more limitations occurred in the area of participation for those on antiretroviral treatment. The ICF provided a useful framework within which to describe the functioning of those with HIV and the impact of the environment. Given the wide spectrum of problems found, consideration could be given to a number of ICF core sets that are relevant to the different stages of HIV disease. (C) 2010 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.

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The advent of highly active antiretroviral therapy (HAART) improved HIV infection prognosis. However, adverse metabolic and morphologic effects emerged, highlighting a lack of investigation into the role of nutritional interventions among this population. The present study evaluated the impact of a nutritional counseling program on prevention of morphologic and metabolic changes in patients living with HIV/AIDS receiving HAART. A 12-month randomized clinical trial was conducted with 53 adults of both genders in use of HAART. Subjects were allocated to either an intervention group (IG) or a control group (CG). Nutritional counseling was based on the promotion of a healthy diet pattern. Anthropometrical, biochemical, blood pressure, and food intake variables were assessed on four separate occasions. Sub scapular skin-fold results showed a significant tendency for increase between time 1 (Mean IG = 14.9 mm; CG = 13.6 mm), time 3 (Mean IG = 16.7 mm; CG = 18.2 mm), and time 4 (Mean IG = 16.4 mm; CG = 17.7 mm). Lipid percentage intake presented a greater increase among controls (time 1 mean = 26.3%, time 4 mean = 29.6%) than among IG subjects (time 1 mean = 29.1%, time 4 mean = 28.9%). Moreover, participants allocated to the IG presented an increase in dietetic fiber intake of almost 10 grams. The proposed nutritional counseling program proved to be effective in improving diet by reducing fat consumption and increasing fiber intake.

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In this thesis it is investigated how Spanish-speakers in Sweden experience living with two languages ​​and how common it is for them to use code-switching in their everyday speech. The study has focused on not only the experiences but also the use of code-switching among Hispanics who have become bilinguals in Sweden. The study has also examined the attitudes the informants show towards code – switching.The aim of this study is to provide a picture of the experiences Spanish-speakers have of becoming bilinguals in Sweden and of learning and using Swedish as a second language. It is of interest to see how the bilinguals converse inside and outside the home and how frequent and accepted it is among the Hispanics in Sweden with the use of code-switching in different social contexts. In summary, we can see that the Hispanics in Sweden are satisfied with the linguistic development they have experienced by learning a new language and that they consider it beneficial being bilingual. The study shows that code-switching is very much used, but not fully accepted even by those who use it on a daily basis. Code-switching is in many cases not considered appropriate and it is sometimes performed unconsciously.

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Bakgrund: Diabetes typ 1 ökar bland barn och ungdomar, Sverige har den näst högsta insjuknandefrekvensen i hela världen. Diabetes typ 1 är en kronisk autoimmun sjukdom vilket innebär att kroppens immunförsvar angriper de egna insulinproducerande cellerna i pankreas. Patienter med diabetes typ 1 löper stor risk att drabbas av komplikationer och följdsjukdomar. Syfte: Syftet med denna studie är att beskriva barn och ungdomar samt deras föräldrars upplevelser av att leva med diabetes typ 1. Metod: En litteraturstudie genomfördes med totalt 15 artiklar utifrån studiens syfte, sökningarna har skett i databaserna Cinahl och PubMed. Artiklarna poängsattes med hjälp av Högskolan Dalarnas modifierade version av granskningsmallar för kvantitativa och kvalitativa artiklar. Resultat: Analysen av artiklarna resulterade i fyra kategorier som beskriver barn och ungdomars upplevelser: begränsningar i vardagen, stöd från föräldrar och sjukvården var centralt, rädsla för komplikationer samt att vara annorlunda. Två kategorier beskriver föräldrarnas upplevelser: oro rädsla och frustration samt att våga släppa kontrollen. Slutsats: Barn och ungdomar med diabetes typ 1 upplevde sitt liv som begränsat. Sjukdomen påverkar dem i skolan, under fysisk aktivitet, tillsammans med vänner, och i sociala sammanhang. Föräldrar till barn och ungdomar med diabetes typ 1 upplevde rädsla och oro över sitt barns sjukdom.

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Syfte: Att undersöka patienters upplevelser av livskvalitet vid nydiagnostiserad typ 2 Diabetes Mellitus. Metod: En empirisk studie med en kvalitativ ansats som innefattade tio deltagare med nydiagnostiserad typ 2 Diabetes Mellitus. Semistrukturerade intervjuer genomfördes utifrån en intervjuguide där insamlad data analyserades med kvalitativ manifest innehållsanalys. Resultat: Studien resulterade i fyra huvudkategorier och tio subkategorier. Upplevelsen av att få ett diagnosbesked varierade mellan deltagarna, för vissa deltagarna var beskedet inte förvånande medan andra upplevde känslor av chock och förnekelse. Deltagarna upplevde positiva förändringar, exempelvis viktnedgång och förbättrad hälsa men även negativa förändringar, exempelvis att vara beroende av läkemedel. Vissa upplevde ingen förändring alls. Typ 2 Diabetes Mellitus påverkade inte deltagarnas fysiska eller psykiska hälsa i de flesta fall. Deltagarna ansåg det som viktig att få stöd från både omgivningen och hälso- och sjukvården. Konklusion: Känslorna över ett diagnosbesked kunde variera men upplevelsen av livskvalitet påverkades inte av Typ 2 Diabetes Mellitus i de flesta fall i studien. Patientens inställning till att leva med Typ 2 Diabetes Mellitus inverkade på förmågan till att utföra egenvård, och distriktsköterskans stöd och engagemang ansågs vara betydelsefullt i sjukdomsprocessen.

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Bakgrund: Beröringen är ett av människans grundläggande behov. Närhet och beröring har betydelse för välbefinnandet. Beröring är en central del i vårdandet, där den är förväntad och accepterad. Att leva med cancer innebär ett stort lidande. Både fysiskt, psykiskt, socialt och existentiellt. Många genomgår tuffa behandlingar med biverkningar, vilket skapar ett lidande för både patient och närstående. Syfte: Syftet med denna litteraturöversikt var att beskriva beröringens betydelse i vårdandet av cancerpatienter. Metod: En litteraturöversikt, där femton vårdvetenskapliga artiklar har använts, nio med kvantitativ metod och sex med kvalitativ metod. Resultat: Studiens resultat visade att beröring har betydelse i omvårdnaden av cancerpatienter, både i livets slut och hos de som genomgår tuffa behandlingar. Beröring dämpade svåra biverkningar såsom illamående, oro/ångest, smärta samt att lindra lidandet. Patienterna upplevde ökad livskvalitet. Beröringen hade även en positiv betydelse för patienternas relation med både sjuksköterskan och anhöriga. Slutsats: Att drabbas av cancer innebär ett stort lidande, både fysiskt, psykiskt, socialt och existentiellt. Litteraturöversikten visar att beröring som omvårdnadsåtgärd hjälper patienterna att öka sitt välbefinnande på alla dessa fyra plan. Genom att använda beröring inom vårdandet av cancerpatienter kan man öka deras livskvalité och välbefinnande.

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Syfte: Syftet med litteraturöversikten var att sammanställa aktuell forskning som beskriver hur det är att leva med Amyotrofisk Lateral Skleros (ALS). Metod: Vetenskapliga artiklar söktes i databaserna CINAHL och PubMed. Tolv artiklar med kvalitativ ansats valdes ut och kvalitetsgranskades enligt granskningsmall för kvalitativa studier. Huvudresultat: Resultatet visade att de som drabbades av ALS, en obotlig sjukdom, och deras närstående utsattes för stora psykologiska påfrestningar. Det fanns en rädsla och oro över att förlora kroppsfunktioner utan förvarning och detta medförde att patienter med ALS kände sig som fångar i den egna kroppen. Självförtroende och självkänsla rubbades negativt och bidrog till stunder av isolering, uppgivenhet och frustration. För att hantera sin livssituation använde sig patienter med ALS av olika strategier och livsstilsförändringar för att underlätta och möjliggöra ett oberoende i vardagen. Känslor av skuld och skam över familjens lidande i samband med sjukdomen ALS kunde bli en börda att bära för patienter med ALS och dessa känslor kunde generera till ett ökat kontrollbehov av omgivningen. Patienter med ALS hade kvar en känsla av hopp inför framtiden. Slutsats: Litteraturöversikten kan öka förståelsen hos sjuksköterskan och de närstående hur det är att leva med sjukdomen ALS och därmed skapa bättre individuella förutsättningar för god omvårdnad och god omsorg för patienter med ALS.

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Bakgrund: Diabetes typ 2 är en endokrin sjukdom och är en av de största folksjukdomarna i världen. Förhöjda blodsockervärden gör att både små och stora blodkärl tar skada och detta leder till olika komplikationer såsom hjärtinfarkt, stroke och njurskador. Med hjälp av viktnedgång, kostreglering, regelbundet fysisk aktivitet och övervakning av blodglukosnivåerna kan risken för komplikationer förebyggas. Genom att förebygga komplikationer kan livskvaliteten främja patientens dagliga liv. En del av diabetesvården består av egenvårdsprogram där patienten får stöd och rådgivning att hantera sin diabetes. Syfte: Denna litteraturstudie syftar till att studera vilka faktorer i egenvårdsprogram som främjar livskvaliteten hos patienter med diabetes typ 2. Metod: Litteraturstudie, artiklarna söktes i databaserna CINAHL, PubMed och Web of Science. 14 kvantitativa artiklar inkluderades. Resultat: Resultatet visade att information, individuell målsättning och uppföljning var viktiga faktorer i egenvårdsprogrammen för att främja livskvaliteten hos patienter med diabetes typ 2. Slutsats: Att leva med diabetes typ 2 kräver noggrannhet och planering i det dagliga livet. Egenvårdsprogram kan minska risken för komplikationer där följsamhet till egenvården främjas och livskvaliteten gynnas.

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The development of non-governmental organizations (NGOs) in China has been unprecedented in the past fifteen years. The 1995 Fourth World Conference on Women (FWCW) and parallel NGO Forum in Beijing, China, opened the door for the first time for the establishment of women’s NGOs in China. This paper examines the development of Chinese women’s NGOs with a particular focus on two organizations in Beijing for marginalized female populations: one focusing on lesbians and the other helping women with HIV/AIDS. I examine the structure and growth of each NGO; however, on a more personal level and perhaps more importantly, I use the interviews I conducted with volunteers and clients of both organizations to analyze the importance of such organizations for lesbians and women living with HIV/AIDS. How have the lives of these women changed as a result of these particular organizations? What is their view regarding the support for lesbians and female HIV patients in China? These two case studies will shed light onto lesbians and women with HIV/AIDS in Beijing and the significance of such NGOs which function as the only support channels available for these two socially taboo communities.

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This study proposes and uses a multipolar qualitative methodology for the investigation of the meanings of corporate work under the impact of the technical-scientific knowledge. Based on the constructionist epistemology and on a heideggerian approach, this methodology made possible the description of such phenomenon under the Management perspective, but also under the Psychology, Sociology and Philosophy views. Study starts with empirical data, collected by interviews and in publications, and analyzes them based on conceptual contributions from the four referred poles. As a result, this investigation proposes reflexivity, impermanence and entanglement as meanings of the corporate work that culminate in the paradoxical work. It also demonstrates that the impact of knowledge occurs in a reflexive spiral of complexification, continuously affecting individuals and work processes; describes the impermanent character of the work ruled by time, by neophilia and by uncertainties that make precarious the very subjective experience of worker; and proposes that this work becomes entangled due to the way it is managed, and is an entangling work, for embarrassing the individual in its techniques, logics and dissonances. The paradoxical essence that emerges from this appreciation of corporate work is described on the following scopes: its reflexivity does not prevent its rationality to be fragile; its dynamism coexists with the difficulty to achieve substantive organizational changes; its entanglement compromises the possibilities of an apparently reachable well-being; its focus on present ends up to be emptied; and its purpose of individual sustenance becomes unsustainable due to hyperconsumption. But the conclusions of the study do no describe a definitive phenomenon. At the ending, it points out possibilities of living with the paradoxical work as well as possibilities of its transformation.

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This study aims to identify the social representations built on senior care health workers of Primary Care. This is an exploratory research within the subsidized social representations held in 100 Basic Health Units in the city of João Pessoa-PB, with a sample of n= 204 workers of both sexes, who agreed to participate. To collect the data used to set an interview in two parts: the first looked at the Test of Free Association of Words using the inductive stimulus "senior care". The interviews were analyzed with the help of a software for quantitative analysis of textual data ALCESTE (version 2010). The results were interpreted from the theoretical framework of social representations. The study included 178 women (87.25%) and 26 men (12.75%), working in Family Health Units in the city of João Pessoa, the majority are aged between 40-49 years of age ( 28.92%), and have higher education with 81.86%. The results of Alceste link to the term inducer six (6) where the hierarchical classes representing senior care workers as synonymous with care and attention, showing situations neglect of the elderly, for that patience is required to promote the increase of disease prevention and living with the elderly to generate humanization in health services. It is considered that the social representations of health workers on assistance to the elderly may support modeling of strategic actions in health services with health promotion programs for large groups, able to modify practices and behavior in elder care and strengthening the policy was directed at the elderly