Dissertations / Theses on the topic 'Autonomy for self-care'

Youth in foster care who experience disabilities face many challenges as they transition out of foster care and into adulthood. In order to assist these youth, it is crucial to understand factors that may impact their self-determination, which research links to positive transition outcomes for youth with disabilities (Wehmeyer, Palmer, Agran, Mithaug, & Martin, 2000). While much of the existing research on the correlates and outcomes of self-determination focuses on young people with disabilities overall, and little is known about whether factors such as abuse, family stressors and extended length of time in care, and frequent placement changes influence self-determination. Exploring predictors of self-determination in youth with disabilities in foster care can be beneficial to researchers and child welfare practitioners who seek to identify effective approaches for helping youth accomplish successful transitions into adulthood. This dissertation examined the extent to which physical and sexual abuse and family stressors, such as unemployment, domestic violence, and homelessness prior to entering care; as well as foster care placement instability and total length of time in care, impact a youth's self-determination. In addition, the influence of demographic features such as race and gender on these associations was examined. Increased understanding of factors that contribute to self-determination can facilitate targeted interventions and services that enhance the lives of youth as they exit out of the foster care system and into adulthood. Overall, the findings did not reveal significant associations between self-determination and physical and sexual abuse, family stressors, length of time in foster care or number of placement moves. Post hoc exploratory analysis, however, detected other significant relationships. For example, above and beyond the main effect association of length of time in care, youth who experienced physical abuse and stayed in care for long periods of time demonstrated higher levels of autonomy. Likewise, youth with a greater number of family stressors in their family of origin, and who experienced longer stays in foster care, also demonstrated significantly higher levels of autonomy above and beyond the main effects of family stressors. These relationships speak to the resiliency and the varying nature of self-determination.

The number of older persons is growing at a shocking rate. In spite of this reality, the South African health care sector does not prioritise older persons, causing their health to be poorly managed. Not only does poor health management affect the health of the older person, but also economic factors. This causes a high burden on the public health sector of South Africa, with specific reference to the Primary Health Care (PHC) clinics. PHC clinics in this country are not only overcrowded due to staff shortages, but also owing to the rapidly ageing population and the large number of younger persons affected by the high unemployment rate of South Africa. The above-mentioned factors keep the professional nurses in the clinic from spending time on proper physical examinations and provision of health education to older persons. This causes older persons to lack knowledge regarding self-care, potentially leading to unintentional self-neglect, which decreases their quality of life. Studies conducted on older persons concluded that the older person wants to be involved in health promotion, but needs the necessary knowledge to take care of him- or herself. Therefore, the researcher's overarching aim with this study was to develop guidelines to facilitate self-care amongst older persons. Such guidelines aim at constituting an indirect approach to promote the health of the older person. Health education on self-care should be conducted in self-care support groups, since community experience teaches that some older persons in the community do not apply self-care skills learned without some form of support. The aim with these guidelines is to decrease unintentional self-neglect by empowering the older person to make autonomous decisions regarding self-care, in order to increase quality of life. RESEARCH AIM AND OBJECTIVES In order to reach the overarching aim of this study, which comprises the development of guidelines to facilitate self-care amongst the older persons in the Potchefstroom district, the study firstly includes a literature review to understand self-care and related constructs from a theoretical perspective. Secondly, the Appraisal of self-care agency scale-A (ASA-A) and Exercise of self-care agency scale (ESCA) were used as questionnaires to assess the self-care of the selected older persons. Lastly, after determining the self-care of the older persons, the study investigates the relationship between these two questionnaires through correlational analysis. RESEARCH DESIGN A quantitative, descriptive, correlational and contextual design was used in this study to .reach the overarching aim and respective objectives. RESEARCH METHOD The researcher firstly conducted a literature review to understand self-care and related constructs. Thereafter the researcher employed two structured questionnaires, the ASA-A and ESCA, were employed to collect data. The questionnaires were developed to measure self-care (self-care is determined by measuring the self-care agency). These questionnaires were based on Dorothea OrenYs self-care deficit theory of nursing, the same theory that this research study is based on. Minor adaptations were made to both the questionnaires prior to administration to the predominantly Setswana-speaking older population. The study formed part of the larger Multinational Prospective Urban and Rural Epidemiological study (PURE-SA study - ethical approval number 04M10). All the older persons identified in the peri-urban population of the PURE-SA study living in the Potchefstroom district and who were willing to participate were included in the sample. Trained fieldworkers assisted the researcher in data collection. Of the 198 older persons, 192 participated, accumulating to a 98% response rate. Lastly the researcher correlated the ASA-A and ESCA to determine their relationship as an added benefit to this research study. RESULTS The findings indicate that although the studied older population was of a lower socio-economic status with a lower literacy level, their overall self-care was relatively good. Seven self-care deficits were identified namely time management skills affecting self-care, energy deficit affecting self-care, sleep deprivation, lack of knowledge and ability to acquire knowledge with regard to health and self-care, lack of a rest, exercise and self-care programme, self-care deficit caused by physical deterioration and, lastly, the lack of performance of activities to prevent/decrease self-care deficits. These identified self-care deficits supported the development of guidelines to facilitate self-care amongst older persons, together with Menon's psychological health empowerment model, as well as an in-depth literature review on self-care and related constructs to understand self-care from a theoretical perspective. Furthermore, the study compared the ASA-A and ESCA questionnaires to determine the relationship between these questionnaires. The two questionnaires had a very good correlation with each other, conclusion that either of these two questionnaires could be used to measure self-care of a population.
Thesis (M.Cur.)--North-West University, Potchefstroom Campus, 2010.

Estudo observacional quantitativo longitudinal prospectivo em idosos e seus cuidadores, de ambos os sexos, internados na enfermaria de geriatria de um hospital-escola, com coleta de dados no período de agosto de 2013 a março de 2014. Objetivo: Avaliar a condição funcional subjetiva e objetiva de idosos internados em uma enfermaria geriátrica; entre os relatos de desempenho no autocuidado e suas necessidades de ajuda. Método: avaliações subjetivas e objetiva, usando o instrumento Performance test of Activities of Daily Living (PADL), com 16 tarefas associado a três itens da Escala de Atividades Instrumentais de Vida Diária (AIVD). Resultados: o sexo feminino predominou dentre os idosos (32 - 58,2%) e os cuidadores (46 - 83,6%); a idade dos clientes variou entre 64 e 99 (x=80) anos, e dos cuidadores entre 37 e 84 anos (x=58,7a); a escolaridade básica foi mais frequente entre os idosos (36 - 65,4%) e a superior (18 - 32,7%) para os cuidadores; quanto ao parentesco dos cuidadores, 30 (54,4%) eram filhas e 12 (21,5%) esposas. Para comparar as funcionalidades subjetivas e objetiva no desempenho do autocuidado, calculou-se o Índice de Concordância (Ind.Con%), que variou de 62 a 93%, com Kappa oscilando entre 0,20 e 0,59. Tanto os idosos como os cuidadores referiram desempenhar as tarefas sem ou com ajuda, porém, na avaliação objetiva, detectou-se maior necessidade de ajuda ou a incapacidade da realização da tarefa. Saliente-se que os idosos se autoavaliaram um pouco melhor que os seus cuidadores. Discussão: Nas avaliações subjetivas idosos e subjetivas cuidadores, em comparação com a objetiva, as respostas dos idosos para o autocuidado foram confirmadas na avaliação objetiva e com os relatos reportados subjetivamente pelos cuidadores. Verificou que o Nível de funcionalidade nos idosos, na maioria foi o nível 3 (fazer sem ajuda) para as atividades de vida diária PADL e atividades instrumentais AIVD. Os relatos subjetivos idosos em comparação com a avaliação objetiva podem apresentar que alguns idosos fazem as atividades sem ajuda, outros com ajuda e aqueles que não fazem as tarefas sozinhos, e, assim, necessitaram de algum tipo de ajuda. As informações subjetivas reportadas pelos cuidadores foram discordantes em comparações com a avaliação objetiva em alguns itens das escalas. Os idosos tendem a se avaliar melhor que seus cuidadores. Os cuidadores reportam que os idosos conseguem realizar a tarefa, mas, na avaliação objetiva, alguns não fazem. Conclusões: Há importantes diferenças entre as capacidades funcionais relatadas pelo próprio idoso e seus cuidadores quando comparadas com a observação direta destas tarefas pelo enfermeiro, o que indica a necessidade de basear as ações e os cuidados muito mais na avaliação direta do que exclusivamente nos relatos dos clientes e de seus cuidadores
Prospective, longitudinal quantitative study in elderly people and their proxies, of both genders, admitted at a geriatric ward of a school hospital, whose data collection was August 2013 to March 2014. Objective: to evaluate subjective and objective functional condition of elderly people admitted at a geriatric ward; among the reports of self care performance and their needs for help. Method: subjective and objective evaluations using the instrument Performance test of Activities of Daily Living (PADL), with 16 tasks associated to 3 items of Instrumental Activities of Daily Living (IADL). Results: Female gender was predominant among the elderly (32 - 58.2%) and the proxies (46 - 83.6%); clients´ age varied between 64 and 99 (x=80) years old and their proxies between 37 and 84 years old (x=58.7y); basic education was more frequent among the elderly (36 - 65.4%) and higher (18 - 32.7%) for their proxies. Regarding the family connection of proxies, 30 (54.4%) were daughters and 12 (21.5%) wives. In order to compare the subjective and objective functionalities to perform self care, it was calculated the Concordance Index (CI), which varied from 62 to 93%, whose Kappa was between 0.20 and 0.59. Both elderly people and their proxies referred performing tasks with or without help. However, on the objective evaluation it was detected greater need for help or incapability to perform a task. It must be highlighted that elderly people evaluated themselves a little better than their proxies. Discussion: elderly subjective and proxy subjective evaluations in comparison to objective ones, elderly responses for self care were confirmed in objective evaluation and the reports provided subjectively by their proxies. It was verified that the functionality level of elderly people in majority was level 3 (do it without help) for PADL daily life activities and IADL instrumental activities. Elderly subjective reports in comparison to objective evaluation, it can be seen that some elderly people perform their activities without help, others with help and the ones who don´t perform tasks by themselves required some kind of help. Subjective information reported by proxies was discordant in comparison to objective evaluation in some items of the instruments. Elderly people are more prone to evaluate themselves better than their proxies. Proxies reported that elderly people can perform their tasks, but in the objective evaluation it was not observed. Conclusions: there are important differences between the functional capacities reported by elderly themselves and their proxies when compared to the direct observation of these tasks by the nurse, which points to the need of actions and care more focused on the direct evaluation rather than reports by clients and their proxies

Orientador: Edison Bueno
Dissertação (mestrado profissional) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas
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Resumo: Este estudo tem como objetivo analisar o processo de coconstrução da autonomia no cuidado em diabetes mellitus, através das reflexões de pessoas com diabetes e profissionais de saúde de um ambulatório público especializado, localizado em um município de médio porte, no estado de SC, através de uma pesquisa qualitativa. Os referenciais teóricos buscaram ampliar o entendimento sobre temas e contextos de vida como autonomia, doenças crônicas, diabetes, adoecimento, viver com diabetes, clínica do sujeito, autocuidado, cuidado, trabalho em saúde, coconstrução e cogestão. Os dados foram coletados através de entrevistas individuais semiestruturadas com as pessoas com diabetes e os profissionais de saúde deste ambulatório, além da realização de uma Roda de Conversa com os profissionais de saúde sobre as falas dos usuários nas entrevistas. As falas foram transcritas e analisadas através dos referenciais da análise de conteúdo, especificamente pela análise temática (Bardin apud Minayo, 2014), destacando-se a compreensão sobre como as pessoas com diabetes e profissionais de saúde entendem o processo de coconstrução da autonomia das pessoas com diabetes, reforçando o protagonismo dos sujeitos e privilegiando meios que possam levar ao cuidado integral e singular. A escuta, a clínica ampliada e a cogestão se afirmam como importantes estratégias para compreender o processo de vivência com diabetes e possibilita perceber o outro com um sujeito singular, funcionando como disparador da criação de estratégias compartilhadas entre adoecidos e profissionais de saúde, na construção da autonomia do cuidado, onde a doença faz parte da vida e não a vida parte da doença
Abstract: This study aims to analyze the process of co-construction of autonomy in care in diabetes mellitus, through the reflections of people with diabetes and health professionals from a specialized public clinic, located in a medium-sized municipality in the state of SC, through a qualitative research. Theoretical frameworks attempted to increase the understanding of issues and contexts of life as autonomy, chronic diseases, diabetes, illness, living with diabetes, the subject of clinical, self-care, care, health work, co-construction and co-management. Data were collected through individual semi-structured interviews with people with diabetes and healthcare professionals of this clinic, in addition to holding a Chat wheel with health professionals about the speeches of the users in the interviews. The discussions were transcribed and analyzed through content analysis of reference, specifically the thematic analysis (Bardin apud Minayo, 2014), highlighting the understanding of how people with diabetes and healthcare professionals understand the co-construction process of people's autonomy with diabetes, reinforcing the role of the subject and focusing means that can lead to the full and meticulous care. Listening states, the clinic expanded and the co-management if claim as important strategy to understand the process of living with diabetes and allows perceive the other with a singular subject, functioning as trigger the creation of strategies shared between diseased and health professionals in the construction of autonomy of care, where the disease is part of life and not the life of the disease
Mestrado
Política, Planejamento e Gestão em Saúde
Mestra em Saúde Coletiva

Syftet med den här kvalitativa intervjustudien var att undersöka hur personal i ett omsorgsföretag ser på sig själva och sitt arbete i relation till kompetens, samhörighet och autonomi. Dessa tre begrepp är centrala i Self-determination theory. Resultatet visade att samhörigheten främjades av ett nära samarbete med kollegor och genom många gemensamma aktiviteter, både på arbetstid och utanför. Det främsta hindret för att uppleva samhörighet var om arbetsgruppen strävade åt olika håll eller om det uppstod konflikter i samspelet. Kompetens innebar för respondenterna att känna sig trygga i sitt bemötande av brukarna och att de visste vad de skulle göra i olika situationer. Även om de uttryckte en viss saknad av kunskap inför utagerande- och självskadebeteende så upplevdes ändå de lagar och regler som styrde verksamheten vara det som skapade störst osäkerhet och kunde vara hindrade för känslan av att uppleva sig kompetent. Resultatet visade också att respondenterna, trots att verksamheten till stor del styrdes av lagar och regler, upplevde en känsla av autonomi så länge de fick vara delaktiga i att planera och organisera arbetsuppgifternas utformning.
The main objective of this qualitative interview study was to examine how personnel elemployed at a company providing social care services, view themselves and their work in relation to competence, relatedness and autonomy. These three concepts are an essential part of Self-Determination Theory. The result showed that relatedness was promoted by close cooperation between colleagues and by frequent common activities during the workday, but also by activities with colleagues outside work. Main obstacles to relatedness appeared when the staff were striving in different directions and when conflicts emerged. The respondents felt competent in interaction with the clients and when it was clearly stated how they were supposed to act in specific situations. The respondents expressed the need for more of knowledge of self-harming behavior and similar behaviors of acting out. However, the main obstacle to feeling competent was insecurity of what laws and regulations that govern their workplace. Despite the fact that laws and regulations govern a large part of their work, the respondents expressed that they felt reasonable autonomous as long as they participated in the planning and organization of different tasks.

This study compared verbal and nonverbal residents of Intermediate Care Facilities-Developmental Disabilities-Habilitative type (IFC-DD-H) on self-determination. The residents were compared using an adapted version of the Association for Retarded Citizen's (ARC) Self-determination scale.

Objective: Transfer from pediatric care into the adult health care system is known to be a vulnerable phase in the lives of youth with special health care needs (YSHCN). Recommendations from the literature favor assessment of transition readiness rather than simply pass over YSHCN from pediatric to adult-centered care by the age of 18. Nevertheless, no validated and disease neutral assessment instrument in German exists to date. Hence, our aim was to cross-culturally adapt and to pilot-test a German version of the Transition Readiness Assessment Questionnaire (TRAQ 5.0). We wanted to provide a tool that can be applied broadly during the health care transition (HCT) process of YSHCN. Methods: The development included translating and adapting TRAQ 5.0 to German and conducting a pilot-study with 172 YSHCN between the ages of 14 and 23. Results: Cross-cultural adaptation resulted in the TRAQ-GV-15. Exploratory factor analysis led to a 3 factor-structure. Internal consistency for the overall score was good with a Cronbach’s alpha of 0.82. Age, in contrast to sex, had a significant effect on the TRAQ scoring. The administration of the TRAQ-GV-15 was well received and demonstrated good feasibility. Conclusion: The TRAQ-GV-15 is an easily applicable and clinically usable instrument for assessing transition readiness in German speaking YSHCN prior to HCT.

Bakgrund: Att involvera patienterna och de närstående i planeringen av vården i livets slut är en essentiell del av palliativ vård. För att uppfylla detta behöver patienternas självbestämmande stärkas. Syfte: Syftet var att kartlägga begreppet självbestämmande i palliativ vård. Metod: Begreppsanalys enligt vårdforskarna Walker och Avants metod.  Resultat: De definierande attributen för självbestämmande i palliativ vård är; respektera patientens frihet, information, samarbete och kommunikation. Alla attribut behöver inkluderas för att stärka patienternas självbestämmande i palliativ vård. Slutsats: Patienternas självbestämmande i palliativ vård kan stärkas genom att vårdpersonalen arbetar personcentrerat enligt 6S-modellen.
Background: To involve patients and their families in the planning of care in the end of life is an essential part of palliative care. To meet this, patients self-determination needs to be strengthened. Aim: The aim was to clarify the concept of self-determination in palliative care. Method: Concept analysis according to Walker and Avants method. Results: The defining attributes of self-determination in palliative care are; respecting the patients freedom, information, cooperation and communication. All attributes needs to be included to be able to strengthen patients self-determination i palliative care. Conclusion: Patients self-determination in palliative care can be strengthened if healthcare professionals work person-centered according to the 6S-model.

Bakgrund: Demenssjukdom är en växande folksjukdom som ställer höga krav på sjuksköterskekåren att kunna erbjuda adekvat omvårdnad. Däribland ingår personcentrerad omvårdnad som bland annat syftar till att bejaka patientens rätt till autonomi. Detta trots att demenssjukdom är en sjukdom som innebär kognitiv nedsättning vilket försvårar möjligheten att delta i beslutsfattande kring den egna omvårdnaden för personer med demenssjukdom.Syfte: Syftet med denna studie är att sammanställa litteratur om sjuksköterskors erfarenheter av autonomi hos personer med demenssjukdom.Metod: En litteratursökning gjordes på databaser. Materialet bearbetades enligt Danielssons innehållsanalys.Resultat: Resultatet i denna litteraturstudie baseras på tio vetenskapliga kvalitativa studier. Analysen av dessa tio studier visade följande gemensamma ämnen relevanta för frågeställningen; Lära känna personen och Att främja personens delaktighet samt tillhörande underkategorier.Konklusion: Det är av vikt för sjuksköterskor att lära känna personen bakom demenssjukdomen samt behärska kommunikation med och tolkning av personer med demenssjukdom, samt kunna samverka med andra yrkesgrupper och anhöriga i en effektiv organisation för att bevara och främja autonomi hos personer med demenssjukdom.

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CAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível Superior
As abordagens inovadoras, fortalecedoras do autocuidado, pretendem superar o paradigma biomédico de acompanhamento dos doentes crônicos. São atividades diferenciadas como arte e atividade física que, rotineiramente, não ocorrem nos serviços de saúde. Este estudo objetiva compreender como as abordagens inovadoras incidem no autocuidado de diabéticos, de que forma influenciam e modificam a vivência com a condição crônica. A metodologia de cunho qualitativo utilizada foi a cartografia, identificada como pesquisa de intervenção no sentido de revelar o processo de autocuidado do diabético, produzindo sujeitos e conhecimentos simultaneamente, não havendo a separação de pesquisador-pesquisado, como uma produção intersubjetiva. O coletivo de pesquisa foi formado por 10 diabéticos (6 mulheres e 4 homens), diagnosticados há pelo menos 5 anos, que participavam de abordagens inovadoras. O tempo do diagnóstico variou de 6 até 34 anos. Os temas abordados na entrevista foram vivência, abordagens inovadoras, itinerário terapêutico, vínculo e autocuidado. As ESF e as abordagens inovadoras selecionadas foram respectivamente: Vargas (grupo Hiperdia), São José (grupo Hiperdia e grupo de artesanato), Fortuna (grupo de convivência) e Freitas (grupo de caminhada). Ao final do processo as entrevistas gravadas foram transcritas na íntegra, traçou-se o mapa do itinerário terapêutico e investigou-se o processo de construção da subjetividade em relação às abordagens inovadoras. Foram construídos dois mapas para cada participante. No mapa descritivo no centro está o paciente e sua família e no entorno são discriminados cinco aspectos: rede de apoio social, rede de saúde, abordagens inovadoras vínculo e autocuidado. No mapa interligado descreveu-se os quatro aspectos citados, exceto o vínculo que foi evidenciado através de linhas. Estes mapas foram desenvolvidos com o auxílio do software miMind, objetivando descrever e evidenciar as ligações/associações existentes, sendo posteriormente utilizados para evidenciar os resultados e discuti-los. Para o artigo, foram selecionados quatro mapas, nos quais aparecia mais claramente a processualidade do percurso, modos de subjetivação e construção da autonomia no modo de gerenciar as manifestações da diabete. Os mapas selecionados foram Rosa (ESF Vargas – grupo Hiperdia) e Cravo (ESF São José – grupo Hiperdia) com maior tempo de diagnóstico, respectivamente 20 e 34 anos, e Violeta (ESF Fortuna – grupo de convivência) e Iris (ESF Freitas – grupo de caminhada) com menor tempo de 6 e 7 anos. Os resultados evidenciaram que os pacientes vivenciaram uma situação anterior pautada pelo descontrole da patologia, ocorrência de eventos agudos, ida a serviços de emergência, piora da doença, sentimentos de vulnerabilidade, angústia e incapacidade para lidar com a condição. A participação nos grupos de abordagens inovadoras oportunizou orientações, compartilhamento de informação, vínculo com os profissionais, relações construídas e uso de tecnologia para medir a glicemia. A religiosidade e o apoio familiar se aliaram a esses benefícios promovendo juntos a produção de subjetividade, de modo que o sujeito se torna protagonista da situação. Dessa forma as abordagens inovadoras auxiliam na construção do autocuidado, de forma que os pacientes adquirem a capacidade de perceber o seu corpo, auscultar os sintomas, regular a medicação e a dieta, praticar exercícios físicos e aprender a lidar com a condição crônica, promovendo sua autonomia.
The innovative approaches which fortify self-care intend to overcome the biomedical paradigm on ongoing patient assistance. These are distinguished practices such as art and physical activity which do not take place on health services. This study aims to understand the way innovative approaches concern the diabetic self-care; the way they influence and change a chronic condition experience. The qualitative methodology used was the cartography, identified as intervention research to reveal the diabetic self-care process, producing simultaneously knowledge and individuals in a way there will not be a researcher- subject, like an inter subjective production. The collective research was composed by 10 diabetics, (6 women and 4 men) who had been diagnosed for at least 5 years, who participated of innovative approaches. The diagnosis time varied from 6 to 34 years. The approached themes in the interview were innovative approaches, experiences, therapeutic itinerary, connection and self-care. The Family Health Strategy (FHS) and the innovative approaches were respectively selected: Vargas (Hiperdia Group), São José (Hiperdia Group and art craft Group) Fortuna (Peer Groups) and Freitas (Walking Group). At the end of the process the recorded interviews were fully transcribed; the therapeutic itinerary map was drawn and the subjectivity development process in relation to the innovative approaches was investigated. Two maps for each participant were developed. On the descriptive map center is the patient and his or her family. Around it, five aspects are discriminated: Social support network, health network, innovative approaches connection and self-care. On the interconnected map four quoted aspects were described, except the connection which was highlighted through lines. These maps were developed with the miMind software help, aiming to describe and emphasize the existing bonds/ associations, taking into consideration that they were subsequently used to confirm the results and discuss them. Four maps were selected for the article in which appeared: technical procedures routes, subjectivation modes and autonomy development on how to manage the diabetes manifestations. The chosen maps were Rosa (FHS Vargas – Hiperdia group) and Cravo (FHS São José –Hiperdia Group) with longer diagnostic periods, respectively 20 and 34 years old, and Violeta (FHS Fortuna – peer groups) and Iris (FHS Freitas – walking groups) with 6 and 7 years shorter time. The results showed that the patients experienced a previous situation guided by the pathology unmanageability, occurrence of treble events, visit to emergency health centers, disease worsens, vulnerability feelings, misery and inability to deal with this condition. The participation of innovative approaches in workgroups enables orientations, information share, professional connection, built relationships and technology usage to measure blood glucose. Religiosity and family support joined forces to these benefits promoting together the subjectivity production, in a way the subject becomes the situation’s protagonist. This way the innovative approaches help on the self-care development so that the patients acquire the capacity of perceiving their bodies, auscultate the symptoms, regulate the medication and diet, practice physical exercises and learn how to deal with the chronicle condition, promoting their autonomies.

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior
The incidence of people with chronic renal failure has increased significantly, reaching alarming numbers of individuals with kidney failure. This is a disease that affects kidney function and disables the maintenance of internal homeostasis of the organism. Treatment often causes frustration and limitations due to the various dietary restrictions and changes in lifestyle, which requires the patient to participate in their own treatment, determining its autonomy. Thus, this following research aimed to describe how people with chronic renal failure on conservative treatment take care of themselves and identify the possibilities and limits of self-care of people with chronic renal failure undergoing conservative treatment. It is a descriptive qualitative field research, which has taken place in the Uremia Clinic at the University Hospital of Santa Maria. The study included 15 people with chronic renal failure undergoing conservative treatment who attended the clinic. Data collection was performed through narrative interview supplemented by consulting the medical records of patients. The method of analysis of data was through theme analysis, which is a specific form of content analysis proposed by Minayo. All ethical aspects have been respected according to Resolution 196/96 of the National Health Board. The data were organized into two categories, first, the daily life of people with chronic renal failure undergoing conservative treatment as a possibility for self-care, was unveiled on the themes: the experience of self-care of persons with chronic renal failure on conservative treatment, autonomy in self-care of people in the conservative treatment and family support as a possibility of self-care in the conservative treatment. The second category called the limits of self-care of persons with chronic renal failure undergoing conservative treatment, had the following topics: the progress of the disease and care dependency, and the limits and the impact of conservative treatment in chronic renal failure. It is understood that the results of this research might contribute to the care of people with chronic renal failure on conservative treatment and in the manifestation of their autonomy through self-care. It is due to the health team to think and act in promoting the health of those with an eye toward autonomy in health education activities in the pursuit of quality of life.
A incidência de pessoas com insuficiência renal crônica vem aumentando significativamente, atingindo números alarmantes de indivíduos com falência renal. Esta é uma enfermidade que compromete a função renal e incapacita a manutenção da homeostasia interna do organismo. O tratamento geralmente causa frustrações e limitações devido às diversas restrições alimentares e modificações no estilo de vida, o que exige do paciente a participação no seu próprio tratamento, determinando a sua autonomia. Assim, este estudo teve como objetivos descrever como as pessoas com insuficiência renal crônica em tratamento conservador cuidam de si e identificar as possibilidades e os limites do cuidado de si das pessoas com insuficiência renal crônica em tratamento conservador. Trata-se de uma pesquisa de campo, qualitativa, descritiva, cujo cenário do estudo foi o Ambulatório de Uremia do Hospital Universitário de Santa Maria. Participaram do estudo 15 pessoas com insuficiência renal crônica em tratamento conservador que frequentavam o ambulatório. A coleta dos dados foi realizada por meio da entrevista narrativa complementada pela consulta aos prontuários dos pacientes. O método de análise dos dados foi por meio da análise temática, que é uma modalidade específica da análise de conteúdo proposta por Minayo. Foram respeitados todos os aspectos éticos conforme Resolução nº 196/96 do Conselho Nacional de Saúde. Os dados foram organizados em duas categorias, a primeira, o cotidiano de pessoas com insuficiência renal crônica em tratamento conservador como possibilidade para o cuidado de si, foi desvelada nos temas: a experiência do cuidado de si das pessoas com insuficiência renal crônica no tratamento conservador, a autonomia no cuidado de si das pessoas em tratamento conservador e o apoio da família como possibilidade do cuidado de si no tratamento conservador. A segunda categoria denominada os limites do cuidado de si de pessoas com insuficiência renal crônica em tratamento conservador, teve como temas: o avanço da doença e a dependência de cuidados, e os limites e as repercussões do tratamento conservador na insuficiência renal crônica. Entende-se que os resultados dessa pesquisa possam contribuir no cuidado prestado as pessoas com insuficiência renal crônica em tratamento conservador e na manifestação da sua autonomia através do cuidado de si. Cabe a equipe de saúde pensar e atuar na promoção da saúde dessas pessoas com um olhar voltado a autonomia, nas atividades de educação em saúde, na busca da qualidade de vida.

Self determination has been recognised as a basic human right both internationally and, to an extent, locally, but it is yet to be fully realised for Aboriginal Peoples in Australia. The assertion of Aboriginal community control in Aboriginal health has been at the forefront of Aboriginal peoples' advocacy for self determination for more than thirty years. Aboriginal Community Controlled Health Services and their representative organisations have been the site of considerable resistance and contestation in the struggles involved in trying to improve Aboriginal health experiences. Drawing on some of these experiences I explore the apparent inability of policy and decision makers to listen to systematic voices calling for change from the Aboriginal Community Controlled Health sector. It is government inability to act more fully on clear and repeated messages that is a source of much disquiet within representative Aboriginal organisations. Such disquiet is grounded in a belief that colonial notions continue to influence decision making at policy, practice and research levels resulting in a significant impediment to the realisation of self determination and associated human rights in Aboriginal health matters and Aboriginal Affairs more broadly.

Thesis (Ph. D.)--Ohio State University, 2005.
Title from first page of PDF file. Document formatted into pages; contains xii, 134 p.; also includes graphics. Includes bibliographical references (p. 105-115). Available online via OhioLINK's ETD Center

Le discours commun plaide en faveur l'autonomie du malade. Pourtant soigner la maladie chronique révèle aussi des attachements. C'est ce que nous proposons de mettre en évidence, à travers notre thèse qui prend pour exemple le diabète et envisage, à travers le développement de la notion de travail d'équipement, de questionner l'autonomie, qui est loin d'aller de soi. A partir d'entretiens, d'observations de terrain et d'objets, de recherche de traces, nous interrogeons des pratiques telles que l'éducation thérapeutique, l'introduction des médicaments, des équipements (lecteur de glycémie, pompe à insuline). Tous ces éléments sont autant de médiations, pour le malade, son entourage, les professionnels de santé, les associations de malades, qui influencent le cours de la vie avec la maladie. Le travail d'équipement permet de faire le lien entre la sociologie de la santé et de la maladie, l'interactionnisme, la phénoménologie et la sociologie de l'acteur réseau. Il offre une grille de lecture de la maladie chronique et du soin, au regard de tous les équipements qui contribuent à la prise en charge la maladie. Il permet de définir ce qu'est l'autonomie dans le cadre d'une maladie qui tient le malade et va plus loin ouvrant vers la construction identitaire de l'homme-avec-la-maladie
Common speech calls for patient autonomy. Yet chronic illness care also reveals attachments. This is what we propose to highlight, through our thesis that takes for example diabetes and plans through the development of the concept of ‘the equipping work', questioning the autonomy, which is far to go self. From interviews, field observations, objects screening, and search of traces, we interrogate such practices as therapeutic education, the introduction of drugs and equipment (glucometer, insulin pump). These elements are all mediations, for the patient, family members, health professionals, patient organisations, which influence the course of living with the disease. Equipping can make the link between the sociology of health and illness, symbolic interactionism, phenomenology and the actor network theory. It provides a grid of chronic illness and care, with all the equipements that contribute to the management of disease. It allows defining autonomy despite the strength of disease ties and leads to rebuild the identity of the man-with-the-sickness

L’hospitalisation représente une étape de vie à laquelle doit faire face une grande majorité des personnes âgées. Cette expérience trop souvent accompagnée d’un déclin physique et psychologique marque pour beaucoup le début de la fin. Basé sur les fondements théoriques de la théorie de l’autodétermination (TAD), ce travail doctoral a deux objectifs. (1) Définir qualitativement le soutien à l’autodétermination dans les services de soins de suite et réadaptation (SSR). (2) Connaître l’impact des orientations de causalité́ des patients sur la perception de soutien ou de contrôle à l’autodétermination et les conséquences motivationnelles et émotionnelles associées. L’étude 1 a montré que les professionnels de santé mettaient en avant une image idéalisée de leur environnement de soins. Les patients (étude 2) ont indiqué de nombreuses contraintes qui atténuent l’effet de cette vision positive. L’étude 3 a démontré que les orientations de causalité du patient étaient une variable qui en interaction avec la perception de l’environnement, n’aboutissait pas aux mêmes conséquences motivationnelles et émotionnelles. De par le rôle déterminant octroyé par la TAD à la motivation, les professionnels de santé se doivent d’être capables de nourrir, entretenir et soutenir la motivation des patients. Une réflexion sur les recommandations pratiques et des axes de recherches futurs seront proposés
Hospitalization is a life stage that faces a large majority of older people. This experience is often accompanied by both physical and psychological declines and means, for most of older people the beginning of the end. Based on the self-determination theory (SDT), this doctoral dissertation has two objectives. (1) To qualitatively define an autonomy supportive environment in after-care and rehabilitation services (ACRS). (2) To know the impact of causality orientations on patients' perceptions of an autonomy supportive or controlled environment and the associated motivational and emotional consequences. Study 1 showed that healthcare professionals conveyed an idealized image of their work environment and the care they provide. Patients (study 2) indicated many constraints that mitigated the effect of this positive view of an autonomy supportive environment and reduced their ability to experience it. Study 3 demonstrated that patient's causality orientations were a variable which interacted with the perception of ACRS environment, did not induce the same motivational and emotional consequences. Thus, these studies contribute to the self-determination theory in the health setting by showing the determining role of patients’ motivation. It is therefore necessary for healthcare professionals to be able to feed, maintain and support patients’ motivation. In the light of the contribution of the self-determination theory, a reflection about practical recommendations and future lines of research will be proposed

As doenças cerebrovasculares de aparecimento súbito e as doenças osteoarticulares são condições que conduzem à perda funcional, com limitação da mobilidade e consequente dependência nos autocuidados. Este relatório pretende expor a efetivação de um projeto de intervenção profissional baseado num programa de cuidados de enfermagem de reabilitação, a pessoas com alteração da mobilidade causada por AVC ou por artroplastia total da anca, avaliando os efeitos das intervenções que visam a capacitação para a autonomia no autocuidado transferir-se. Após a implementação do programa observou-se uma melhoria significativa na força muscular, na propriocepção e no equilíbrio, contribuindo assim para a melhoria da mobilidade e conduzindo à autonomia no autocuidado transferir-se. Conclui-se que o programa de cuidados de enfermagem de reabilitação implementado, teve resultados positivos melhorando a funcionalidade e o grau de autonomia no autocuidado transferir-se; Abstract: “Capacitation of the person with change of mobility, for autonomy in the self-care of transfer” The cerebrovascular diseases of sudden onset and the osteoarticular diseases are conditions that lead to functional loss, with limited mobility and consequent dependence on self-care. This report intends to expose the implementation of the project of professional intervention of rehabilitation nursing to people with stroke and people undergoing total hip arthroplasty, who find themselves with mobility disorders, evaluating the effects of a rehabilitation nursing program that aims to empower autonomy in the self-care of transfer. After the implementation of the program, a significant improvement in muscle strength and balance was observed, by the Lower Scale, Morse Falls Scale and Tinetti Index, thus contributing to the improvement of the functionality assessed by the Functional Independence Measure and leading to autonomy in self-care of transfer. It is concluded that the rehabilitation nursing care implemented has positive results, improving functionality and functional independence level in people with impaired mobility.

Este trabalho refere-se ao educar/cuidar/pesquisar centrado na orientação de enfermagem para o autocuidado da pessoa idosa, com diabetes, visando seu bem-estar; visto a evidência do crescimento demográfico da população idosa em todo o mundo e, em especial, no Brasil. Tem como objetivo aplicar, no contexto de um curso de autocuidado ministrado em oficina sociopoética, o Diagrama de Nola Pender como instrumento de produção de dados sobre a construção de ações e apresentação de propostas de comportamentos de saúde, visando o bem-estar de pessoas. O marco teórico enfoca a Teoria de promoção da saúde de Nola Pender, que defende o processo de capacitação da comunidade para buscar sua qualidade de vida e saúde, incluindo maior participação e controle deste processo. O marco teórico metodológico é a sociopoética, que fundamenta um estudo qualitativo, descritivo, desenvolvido em 2012, após aprovação do Comitê de Ética da Universidade do Estado do Rio de Janeiro, mediante a instituição do Grupo Pesquisador, dispositivo analítico, deste método, composto por 10 sujeitos, aplicando-se as técnicas de pesquisa de sensibilidade e artísticas. São resultados da técnica Vivência de Lugares Geomíticos a delimitação das categorias temáticas, a saber: Medo do desconhecido; Transcendendo a convivência com a diabetes através da aceitação; O autocuidado como resolução dos problemas a serem enfrentados; Busca da cura da diabetes através de uma vida saudável; e Expectativas para o futuro. Na técnica Corpo como território mínimo emergiram os temas: Insegurança; Fragilidade; Dificuldade no controle da glicemia; Controle; Autocuidado; Otimismo; Perseverança; Dificuldade no controle da alimentação; Tranquilidade; Dependência; Conformação; Revolta; Equilíbrio; Desânimo; Autoestima; Autoimagem e Descuidado. Aplicando o Diagrama de Nola Pender constatou-se entre os membros do Grupo Pesquisador (GP) os fatores pessoais que influenciam a conduta prévia à adoção do autocuidado, os benefícios de ações percebidas durante o ensino do autocuidado, e as demandas de competência para assumi-lo, visando à promoção da saúde. Conclui-se, que a conduta de promoção de saúde é a variável que conduz a um olhar através de ações dirigidas que tenham resultados positivos para o bem-estar e o equilíbrio das dimensões corporais. Entre as condutas de promoção da saúde adotadas pelo GP estão: ter compromisso na realização de atividades físicas; alimentação saudável, uso de medicação diariamente e regularmente, além do autocuidado com o corpo e mente, através de práticas de atividade física e de lazer.
This paper refers to education/care/research focused on nursing orientation for self-care of the elderly with diabetes, seeking their welfare; as there are evidences related to elderly growth in the world population and, in particular, in Brazil. It aims to apply the Nola Pender Diagram in the context of a course about self-care based on social poetics, as a way to produce data based on the actions and proposals for health behaviors, seeking the welfare of people. The theoretical framework focuses on Nola Penders theory of health promotion, saying that the process of enabling people to seek their quality of life and health, including greater participation and control of this process. The theoretical methodology is social poetics, which establishes a qualitative and descriptive study, through the establishment of a research group, analytical device of this method, consisted of 10 individuals, applying artistic and sensitivity research techniques. The technique "experience in geomitic places results on the delimitation of the following themes: Fear of the unknown; Transcending living with diabetes through acceptance; Self-care as resolution of problems to be exceeded; Searching for a cure for diabetes through healthy living, and expectations for the future. In the technique "Body as minimum territory" the following themes emerged: Insecurity; Fragility; Difficulty in controlling blood glucose; Control, Self-Care, Optimism, Perseverance; Difficulty in controlling feeding; Tranquility; Dependence; Conformation; Revolt; Balance; Discouragement; Esteem; Careless and self-image. By applying the Nola Pender Diagram it was possible to find the research group personal factors that influence behavior prior to the adoption of self-care, the benefits of perceived actions during teaching self-care, and the demands of competence to assume so in order to promote health. It was found that the conduction of health promotion is the variable that leads to a look through targeted actions that have positive outcomes for the welfare and balance the body dimensions. The following actions for health promotion adopted by the research group were found: commitment to physical activity; healthy eating, daily and regular medication and self-care with the body and mind through practice of physical activity and leisure.

La réduction des inégalités sociales de santé (ISS) est un axe majeur des politiques de santé publiques qui définissent le système de santé d’un pays. L’European Deprivation Index (EDI) est un indice écologique européen, reflétant au mieux l’expérience individuelle de défavorisation sociale, qui permet de réaliser des comparaisons entre régions et pays européens.Ce travail s’est intéressé à l’étude des ISS, estimées par l’EDI, dans le domaine de la néphrologie. A l’aide de l’EDI, nos études ont montré que 32 % des patients transplantés rénaux résidaient dans les zones les plus défavorisées et que leur risque de décès était plus élevé comparativement aux sujets les moins défavorisés.En France, il existe des disparités d’accès à la greffe rénale avec donneur vivant en fonction des centres de greffe. Le sexe féminin et la défavorisation sociale estimée par l’EDI sont associés à une plus faible probabilité de greffe avec donneur vivant. Le nombre de néphrologues et de coordinateurs de greffe par centre ainsi que la réalisation de greffe ABO incompatibles sont des facteurs qui influencent la proportion de greffes avec donneur vivant.Les ISS sont associées à la dialyse autonome en France. Il existe à nouveau une surreprésentation, comparativement à la population générale, de la défavorisation sociale dans la population incidente en dialyse.Les ISS en néphrologie pourraient être réduites par des interventions précoces dans le parcours du patient insuffisant rénal. Il est nécessaire d’élaborer des interventions novatrices individuelles mais aussi au sein des centres de dialyse et de greffe rénale afin d’améliorer l’autonomie du patient et l’accès à la greffe rénale
Reducing social inequalities in health is an important objective internationally. An European transnational index, European Deprivation Index (EDI), estimates the individual experience of social deprivation and allows comparison between regions and countries.This work focuses on the social deprivation estimated by EDI in nephrology. Using EDI, our studies showed that 32% of transplanted patients lived in the most deprived areas. Social deprivation was associated with the increased risk of death in renal transplanted patients.In France, there was heterogeneity between transplant centers regarding living-donor kidney transplantation. Gender and social deprivation estimated by EDI were associated with lower likelihood of LDKT. Number of senior nephrologists or coordinators and the existence of ABO incompatible program could influence the use of LDKT.In France, social deprivation estimated by the EDI is associated with self-care dialysis in end-stage renal disease (ESRD) patients undergoing replacement therapy. Compared with the general population, ESRD patients treated by dialysis experienced a high level of social deprivation.Social inequalities in nephrology could be reduced by early interventions during healthcare pathway. New approaches targeted ESRD patients should be explored at the dialysis or transplantation centers levels

This study examined the demographics, self-perceived autonomy and isolation of the work, and level of burnout of the family child care provider. This was done by surveying the 249 licensed small group family child care providers of New Hampshire. The analysis is based on 71 participants who represented a 28.5% return. The Family Child Care Provider Work Conditions Survey assessed her self-perceptions of the autonomous and isolating factors of the job. Levels of emotional exhaustion, depersonalization, personal accomplishment and burnout ranking were measured using the Maslach Burnout Inventory-Human Services Survey. Demographic information was gathered. Participants were female, European American and married. Most were 31 to 50 years old, 71.8% had some to four years of college, and 46.4% had children of their own under 10 years old. They worked for an average of 12.78 years with a span of one to forty years. Their workday ranged from 3 to 12.5 hours with an average of 10 hours. The characteristics of this sample were contrasted to Kontos' 1992 review of the family child care provider literature. Results demonstrated that the majority reported low burnout profiles. Correlations were evident between several of the perceptions of autonomy and isolation and the burnout subscales. Those participants reporting moderate to high emotional exhaustion were more likely to feel lonely, wish for more contact with other providers, to share responsibilities with other adults and for more time to themselves during the day. Participants reporting moderate to high depersonalization were also likely to report this. Those with high feelings of personal accomplishment were more likely to report rarely feeling lonely, and scored high on the degree to which they liked being their own boss. Those providers reporting a high sense of accomplishment were also those likely to be experiencing little role conflict and an internal locus of control. Results were also discussed in terms of what factors of their work may be moderating the high demands of this job. Implications included suggesting research into understanding when and how the family child care provider chooses to define her work as a career choice.

O presente trabalho escrito, consiste num relatório descritivo das diferentes actividades desenvolvidas, ao longo do estágio do Mestrado de Natureza Profissional de Enfermagem Comunitária, do ICS da Universidade Católica Portuguesa. A enfermagem comunitária implica uma diversidade nas áreas de intervenção pelo que, o enfermeiro com esta especialidade, deve estar capacitado para intervir em qualquer problema de saúde identificado na comunidade, grupo ou pessoa. O estágio foi desenvolvido em três módulos de 180 horas e consistiu na realização de dois projectos de intervenção, recorrendo à metodologia de planeamento em saúde. O projecto de reorganização da consulta de enfermagem à pessoa diabética, foi desenvolvido no decorrer dos dois primeiros módulos de estágio, e tinha como meta a promoção da autonomia do utente diabético da UCSP de Marvila. Permitiu utilizar diferentes estratégias que vêm de encontra aos objectivos propostos pelo Programa Nacional de Prevenção e Controlo da Diabetes. A capacitação da pessoa diabética para a gestão da sua doença foi o fio condutor de todo o projecto. Foram implementadas estratégias de intervenção individuais e em grupo, sempre com a premissa de que a pessoa é um ser único, e que a sua individualidade deve ser respeitada e utilizada para que o enfermeiro possa realmente ser um elemento facilitador da autonomia do utente na gestão dos seus problemas de saúde. Procurou-se desenvolver competências específicas, nomeadamente as que envolvem a utilização da metodologia do planeamento em saúde, integrando a capacitação de grupos para a manutenção e recuperação da saúde. O segundo projecto, realizado no terceiro módulo de estágio, tinha como objectivo a formação de enfermeiros de referência para a utilização de CIPE/SAPE na UCSP de Marvila Este surgiu da necessidade sentida, depois de, no projecto anterior, se ter utilizado o referido programa informático e se terem obtido bons resultados. A partir de então os enfermeiros da unidade consideraram importante a extensão do SAPE aos restantes programas de enfermagem. Em fase de formação, no mês de Janeiro de 2011, foram executados 228 registos de enfermagem em SAPE, dos quais, 22 referentes à consulta de enfermagem à pessoa diabética, e os restantes distribuídos por todos os programas de enfermagem em desenvolvimento na referida unidade. As competências ligadas à formação foram sem dúvida as mais desenvolvidas ao longo deste projecto. A cultura da prevenção é o que se ambiciona para a futura prática como Enfermeira Especialista de Enfermagem Comunitária
This essay, consists in a report describing all the developed activities during the Community Health Master Degree at Portuguese Catholic University, Health Science Institute (Instituto Ciências da Saúde da Universidade Católica Portuguesa). Community nursing implies a wide range of intervention areas, and for that reason the nurse with this specialty must be able to intervene in any health problems identified in the community, group or individual. The internship was developed in three 180 hours modules, consisting in two intervention projects, using health planning methodology. During the first two modules of the internship, the nurse consult to the diabetic person was reorganized, and had as its goal the promotion of USCP Marvila diabetic user’s autonomy, allowing the use of different strategies that meet the objectives proposed by the Diabetes Prevention and Control National Program. The project leitmotiv was the training of the diabetic person to manage their disease. Individual and group intervention strategies were implemented, always considering that the individual is unique, and their individuality must be respected and used so that the nurse can truly be the user health problems management autonomy facilitator. We sought to develop specific skills, notably those involving the use of health planning methodology, integrating the training of groups to maintain and restore health. The second project carried out in the internship third module, had as an objective the training of reference nurses in the use of CIPE/SAPE software at Marvila UCSP. It emerged naturally after the good results obtained with the use of computer software in the previous project. Since then, the nurses considered it important to extend the use of SAPE software to all other nursing programs. During training phase, January 2011, 228 SAPE nursing record were made, from which 22 refer diabetic persons and the remainder are distributed across all nursing programs in development in the unit. Throughout the project, the competencies related to training were undoubtedly the most developed. A culture of prevention.is all I desire for my future practice as a community health specialist nurse

estudo apresentado inscreve-se no domínio do autocuidado, mais concretamente “na promoção da autonomia da pessoa dependente para o autocuidado”. Emerge de um percurso de investigação-ação (IA), desenvolvido numa Unidade de Convalescença da Rede Nacional de Cuidados Continuados Integrados (RNCCI). Os Cuidados Continuados Integrados estão centrados na recuperação global da pessoa, promovendo a sua autonomia e melhorando a sua funcionalidade, no âmbito da situação de dependência em que se encontra. Os critérios usuais de referenciação para estas unidades contemplam a dependência para o autocuidado em pessoas com necessidades de reabilitação funcional e de treino das atividades básicas de autocuidado (tomar banho, vestir-se e despir-se, arranjar-se, cuidar da higiene pessoal, arranjar-se, alimentar-se, usar o sanitário, transferir-se, virar-se e mover-se em cadeira de rodas), com forte potencial de recuperação. Esta condição conduz para uma transição situacional de saúde/doença que implica um processo, uma direção e aquisição de novos papéis e responsabilidades. Promover a autonomia da pessoa dependente para o autocuidado, estimulando-a para uma mudança significativa do seu modo de vida e para uma aprendizagem com recurso a estratégias adaptativas, é algo que pode ser facilitado pelos enfermeiros. Para isso é necessário encontrar um modelo capaz de levar a pessoa dependente a atingir o seu máximo de potencial de autonomia para o autocuidado. O ciclo de IA empreendido gerou mudanças no modelo de cuidados em uso, tendo apelado ao uso de estratégias promotoras da participação e do comprometimento interno dos enfermeiros, com vista à viabilização da mudança. Os resultados permitiram estruturar um conjunto de pressupostos que estão na génese de um modelo de orientação da conceção de cuidados, centrado na promoção da autonomia para o autocuidado. Foi possível partir do que “o que os enfermeiros fazem e como fazem”, para uma estratégia de reflexão “sobre a ação e na ação”, para gerar evidência. Este modelo permite aos enfermeiros compreenderem o que ocorre na prática e organizar de forma critica essa informação, de modo a fundamentar a tomada de decisão que antecede a ação, no sentido da promoção da autonomia da pessoa dependente para o autocuidado. Os dados iniciais, os diagnósticos de enfermagem, os objetivos e as intervenções de enfermagem constituem os itens de informação característicos para a sistematização da explanação da conceção de cuidados, centrada na promoção da autonomia da pessoa dependente para o autocuidado. Para isso relevam estruturas fundamentais como: a especificação dos dados iniciais sobre a capacidade de autocuidado e integração de dados relativos a focos de atenção de enfermagem centrados nas respostas humanas às transições; a sistematização na explanação da conceção de cuidados, centrada nas respostas humanas às transições; o suporte de dados com integridade referencial entre, diagnósticos, objetivos/resultados e intervenções de enfermagem; a utilização de qualificadores que revelem a identificação de oportunidade de desenvolvimento e mestria que caracteriza o máximo de potencial de autonomia (potencial para adquirir, ou desenvolver, ou melhorar o conhecimento e/ou capacidade para estratégias adaptativas no autocuidado; a integração de intervenções de enfermagem promotoras da autonomia da pessoa, potenciando a utilização de dispositivos de apoio adequados a cada pessoa; a monitorização de padrões de resposta durante o processo de recuperação da autonomia, como uma estratégia para a gestão personalizada dos cuidados. Um recurso importante para o desenvolvimento do modelo de intervenção é um sistema de informação de suporte à tomada de decisão em enfermagem, sistematizado que permita gerir a informação produzida como expressão adequada da prática clinica. Este percurso de investigação permitiu: estruturar a ação profissional dos enfermeiros centrada na promoção da autonomia para o autocuidado, tendo por base o seu potencial de recuperação e desenvolver um conhecimento empírico que pretende conduzir a prática profissional, orientada por modelos conceptuais (Teoria do autocuidado de Orem e Teoria das transições de Meleis), tornando-a progressivamente mais significativa para as pessoas.
The presented study is placed within the domain of self-care, more specifically, “within the promotion of the autonomy of the dependent person for self-care”. It emerges from a course of Action Research (AR), developed in a Convalescence Unit of the National Long Term Care Network (LTC). The Long Term Care is focused on the global recovery of the person, promoting one’s autonomy and improving one’s functionality, within the ambit of his/her dependency situation. The usual referencing criteria for these units contemplate the dependency for self-care in people with needs of functional rehabilitation and of self-care basic activities training (Having a shower, getting dressed and getting undressed, getting ready, taking care of one’s personal hygiene, feeding oneself, using the toilet, turning around and moving in a wheel chair), with a strong potential for recovery. This condition leads to a situational transition of health/ illness that implies a process, a direction and an acquisition of new roles and responsibilities. Promoting a dependent person’s autonomy for self-care, stimulating him/ her for a significant change in his/her way of living and for learning through adaptive strategies are actions that can be facilitated by nurses. To do so, it is important to find a model capable to lead the dependent person to reach his/her maximum autonomy potential for self-care. The undertaken AR cycle has created changes in the care model that was being used, having appealed to the use of promoter strategies of participation and internal commitment by nurses, with the purpose of change. The results have allowed structuring a set of presuppositions that are in the origin of an orientation model of the self-care concept, centered in the promotion of the self-care autonomy. It was possible to start from “what nurses do and how they do it” and reflect “about the action and on the action” to generate evidence. This model allows nurses to understand what occurs in practice and to organize that information in a critical way, in order to justify the decision that precedes an action and to promote the autonomy of the dependent person for self-care. The initial data, the nursing diagnosis, the nursing objectives and interventions constitute the information items that characterize the explanation systematization of the care concept, centered on the promotion of the autonomy of the dependent person for self-care. For that, they reveal fundamental structures like: the initial data specifications about the self-care capability and the integration of data related to the nursing attention focus, centered on human responses to transitions; the explanation systematization of the care concept, centered on human responses to transitions; the data support with referential integrity among diagnosis, objectives/results and nursing interventions; the usage of qualifiers that reveal the identification of development opportunity and skills that characterize the maximum potential of autonomy (potential to acquire, or develop, or improve the knowledge and or capability for adaptive strategies on self-care); the integration of nursing interventions that promote the person’s autonomy, potentiating the usage of support devices suitable for each person; the monitoring of response patterns during the autonomy recovery process, as a strategy for the care personalized management. An important resource for the development of the intervention model is a support information system, in order to help the nurses’ decision, which allows managing generated information as an adequate expression of the clinical practice. This investigation course has allowed: to structure the nurses’ professional action centered on the promotion of autonomy for self-care, having as a basis one’s recovery potential; and to develop an empirical knowledge that intends to lead to a professional practice oriented by conceptual models (Self-care Theory by Orem and Transitions Theory by Meleis), making it progressively more significant for people.

A investigação tomou por objeto de estudo o autocuidado, tendo por finalidade desenvolver uma teoria explicativa sobre a reconstrução da autonomia no autocuidado, após um evento gerador de dependência. A investigação desenvolvida englobou dois estudos: o primeiro teve por objetivo dimensionar o fenómeno da dependência no autocuidado no momento da alta hospitalar e o segundo visou explorar em profundidade o processo de reconstrução da autonomia no autocuidado, após um evento gerador de dependência vivenciado. O percurso da investigação decorreu entre junho de 2008 e setembro de 2010, numa Unidade Local de Saúde da região norte. Colaboram no estudo pessoas que vivenciaram dependência no autocuidado. Dos resultados verificou-se que o autocuidado constitui o foco a que os enfermeiros mais recorrem para descrever necessidades em cuidados dos seus clientes em contexto hospitalar. Para traduzir as necessidades em cuidados de enfermagem no domínio do autocuidado dos doentes é associado mais frequentemente o juízo “dependência”. Enquanto processo, a reconstrução da autonomia no autocuidado tem início e termo e decorre num determinado período de tempo. Os processos patológicos, por si só, não desencadeiam a consciencialização face às mudanças que ocorrem na vida das pessoas, nem o início da reconstrução da autonomia. São as mudanças em si, como as alterações nos processos corporais e as alterações na ação realizada pelo próprio, e a confrontação com o que consegue ou não fazer, que fazem com que a pessoa se vá consciencializando. Sendo esta última descrição o que determina o início do processo de reconstrução da autonomia e a vivência ativa da transição. Dos aspetos que mudam e ficam diferentes destacam-se o deixar de fazer o cuidado doméstico, as compras, a alteração no regime terapêutico, a acessibilidade, o gastar mais tempo na realização das atividades, a mudança nas rotinas/hábitos, o permanecer mais tempo em casa e o ficar dependente para a realização das atividades inerentes aos requisitos universais de autocuidado. O processo de reconstruir a autonomia implica tomar decisões relacionadas com o trabalho de transição, nomeadamente o gerir recursos humanos, recursos institucionais e equipamentos ou produtos de apoio. Simultaneamente, é inevitável o desenvolvimento de competências de autocuidado da pessoa com dependência e a necessidade de, pelo menos, um membro da família assumir o papel de prestador de cuidados. No decorrer do processo há fatores considerados críticos como as condições pessoais, os recursos da comunidade, o suporte e a condição de saúde que determina a forma como a pessoa vivencia a transição Os indicadores de resultado da transição traduzem-se no aumento do nível de mobilidade, a diminuição do nível de dependência, na redução do número de quedas, “numa atividade nova tornar-se um hábito”, no retomar da vida social e numa reformulação positiva face ao pedir ajuda. As terapêuticas de enfermagem que emergiram como promotoras de uma transição saudável foram: promover a consciencialização face às mudanças que estão ou que vão ocorrer, avaliar o nível de dependência e identificar com a pessoa as mudanças e diferenças percecionadas; facilitar a tomada de decisões, proporcionando informação válida para a tomada de decisão; identificar antecipadamente necessidades de mudanças na habitação, avaliar condições habitacionais e avaliar recursos disponíveis; desenvolver competências de autocuidado, instruir e treinar estratégias de autocuidado, advogar, instruir e treinar o uso de produtos de apoio; promover o “tomar conta” – reunir com a família, apoiar na gestão das tarefas, de recursos e produtos de apoio e desenvolver competências para “tomar conta”.
The research developed assumed self-care as object of study. The study aimed to develop a theory on rebuilding of autonomy in self-care, after an event generator of dependence. The investigation included two studies: the first, aimed to characterize the phenomenon of dependence on self-care at discharge moment and the second aimed to explore in depth the process of self-care autonomy reconstruction, after an event generator of dependence. The research was conducted between June 2008 and September 2010, in a Local Health Unit in the northern region. The patients that participated in the study were those who have dealt with self-care dependence. From the results was verified that self-care was the focus of attention most frequently used by nurses to describe care needs of the hospitalized client. The judgment most often used to translate the clients self-care needs was the judgment "dependence”. As a process, the reconstruction of autonomy in self-care occurs during a period of time, having a beginning and an end. The pathological process itself alone does not lead to the awareness of the changes in people's lives, nor the beginning of the reconstruction of autonomy. The awareness occurs by the confrontation with the alterations in life, the body changes, the modifications in the routinely actions and the identification of what cannot do. From all the aspects that change and look different, we highlighted the incapacity to perform homecare and shopping, the modification in the treatment regimen, the accessibility, to spend more time during the activities, the alterations in routines / habits, to stay longer at home and to be dependent on self-care activities. The process of rebuilding the autonomy implies to make decisions related to transition process, particularly to managing the human resources, institutional resources and support equipment and products. Simultaneously, it is inevitable the development of self-care competencies and the role of the caregiver. During the transition there are factors considered critical to the personal conditions, community resources, the support and the health condition that determines the way of experiencing the transition. The outcome indicators are related to the increased in the mobility level, the lowering of dependence level, the reduction of falls, the “adoption of new habits”, the beginning of social activities, and the adoption of a positive attitude related to ask for support. The nursing therapeutics promoters of healthy transition that emerged throughout the study were: to promoting awareness of the changes that are or will occur, to assess the dependence level and to identify the person changes and the perceived differences; to facilitating decision making, proving valid information to decision making process; to identifying in advance the need of alterations of housing conditions, to assess housing conditions and to assess available resources; to promoting the development of self-care competencies, to instructing and to training self-care strategies, to advocating, educating and training the use of support products and equipment; to promoting the caretaking, to get together with the patient family, to support the management of tasks, and support resources products, and to develop caregiver role competencies.

碩士
國立臺灣大學
健康政策與管理研究所
106
Background: The incidence and prevalence rate of end-stage renal patients in Taiwan ranks first in the world, while patients with end-stage renal disease patients take dialysis to maintain renal function. The number of dialysis patients prevails in Taiwan is as high as 75,442, and the total medical cost of dialysis patients accounts for 10.6% of the overall expenditure on National Health Insurance in 2013, which puts a heavy burden on health insurance. End-stage renal disease (ESRD) are required to receive regular dialysis treatment. Complex treatment or care such as dietary restrictions, drinking water restrictions, attention to fistula or catheter care, and lifestyle changes can affect social function, physical and mental function. In the past, dialysis patients have been tested on self-efficacy, self-management and quality of life. If the patient''s self-efficacy and self-management can be increased, the quality of life of patients will be significantly improved. Self-efficacy is dynamic and will change with different environments, ages, and new knowledge. It can be improved through change. In the near future, most studies have also studied the impact of social support and self-efficacy through social partners. Support can help patients feel more confident about the difficulty of changing lifestyles. Therefore, this study hopes to explore the needs of peritoneal dialysis patients from social support, dialysis-related support or perceived autonomy support. Objectives: To explore whether the self-efficacy of peritoneal dialysis patients is related to social support, dialysis-related support, and perceived autonomy support, and thus related to health-related quality of life. In addition, this study wants to establish the model and find the correlation between social support, dialysis-related support, perceived autonomy support, self-efficacy and health-related quality of life. Method: This study is a cross-sectional study, using questionnaires to collect data by one-on-one interviews. The questionnaire was purposive sampling. The subjects were patients who had peritoneal dialysis for more than 3 months including National Taiwan University Hospital, Min-Sheng General Hospital and Ministry of Health and Welfare Taipei Hospital. Measurement tools include the International Social Support Scale (ISEL-16), the Illness support scale, the Health Care Climate Questionnaire (HCCQ), and the Dialysis Self-Energy Questionnaire (Perceived Kidney /Dialysis Self-Management Scale, PKDSMS) and Kidney Disease Quality of Life 36 (KDQOL-36), a total of 319 valid questionnaires. Results: The self-efficacy of peritoneal dialysis patients in this article was significantly correlated with health-related quality of life (P<0.05). Social support was significantly associated with self-efficacy (P < 0.01), and social support was also significantly associated with health-related quality of life (P < 0.001). Social support can directly or indirectly through self-efficacy to be associated with health-related quality of life. Perceived autonomy support was significantly associated with self-efficacy (P < 0.001), but perceived autonomy support was not significantly associated with health-related quality of life (P = 0.849), so perceived autonomy support needs to be related to the health-related quality of life through self-efficacy. There was no significant correlation between dialysis-related support and self-efficacy. Conclusion: Social support can be related to health-related quality of life indirectly, and can be directly related to health-related quality of life. Social support has a positive and significant relationship to the health-related quality of life of peritoneal dialysis patients, and can also improve the patient''s self-management confidence, which in turn leads to better health-related quality of life. Furthermore, perceived autonomy support needs to be positively related to health-related quality of life by increasing self-efficacy. It’s necessary to increase confidence of self-management in peritoneal dialysis patients through perceived autonomy support by medical staff, then be related to the health-related quality of life. In the dialysis-related support section, the research team analyzed that because of the younger age of peritoneal dialysis patients, self-care autonomy and the need to limit the conditions of patients undergoing peritoneal dialysis, there is no significant relationship between dialysis-related support, self-efficacy and health-related quality of life. Key words: Social support、dialysis-related support、perceived autonomy support、self-efficacy、health-related quality of life、Peritoneal Dialysis

Dissertação de mestrado em Enfermagem
O acidente vascular cerebral (AVC) encontra-se nos primeiros lugares da lista de causas de morte a nível mundial, sendo uma causa major de incapacidade funcional no adulto. Nos últimos anos tem-se observado um aumento significativo na incidência desta patologia nas pessoas mais jovens acompanhado pelo o aumento da incapacidade física, com repercussões ao nível na execução do autocuidado. Vivenciar uma transição saúde-doença, acarreta alterações profundas na vida de quem experimenta um processo desta natureza, nomeadamente quando se trata de um adulto jovem. Foi realizado um estudo qualitativo de carácter exploratório e descritivo, tendo como objetivos, explorar, descrever e compreender a perspetiva do adulto jovem sobre o processo de reconstrução da sua autonomia após um AVC gerador de dependência no autocuidado. Optou-se pela entrevista não estruturada, dirigida a seis (N= 6) adultos jovens sobreviventes de AVC. A análise das narrativas das entrevistas foi realizada com recurso à análise de conteúdo. Desta emergiram nove (9) categorias: pontos e eventos críticos; alterações na condição de saúde; consciencialização; envolvimento; condições facilitadoras pessoais e sociais; condições inibidoras pessoais e sociais; indicadores de processo; indicadores de resultado; e cuidados informais. Os resultados sugerem que este percurso se inicia com o evento crítico, o AVC, responsável por mudanças na condição de saúde dos participantes, principalmente ao nível do desempenho do autocuidado. A sua recuperação pressupõe envolvimento, o qual acontece quando existe consciencialização das mudanças. A vivência da transição está rodeada por um conjunto de fatores que podem facilitar ou obstaculizar este percurso. É possível ainda inferir a existência de indicadores de processo relacionados com a ligação dos participantes aos profissionais de saúde e com estratégias de adaptação à nova situação, bem como, a existência de indicadores de resultados, os quais reportam fundamentalmente à mestria e o retorno à vida social. Sendo cada percurso vivenciado individualmente, os enfermeiros devem ajustar as suas práticas recorrendo às terapêuticas de enfermagem revelando-se verdadeiros facilitadores da transição saúde-doença vivida por cada sobrevivente do AVC em geral, e em particular pelo adulto jovem.
The stroke stands in the frontline regarding the list of the world death causes, being itself a major cause of adult functional incapacity. Lately, we have been watching a significant increase in the incidence of this pathology in younger adults followed by a physical incapacity rise, with consequences in terms of the self-care. To undergo a health-disease transition provides profound modifications viewing the life of those who experience such a process of this nature, particularly when it comes to a young adult life. A descriptive, qualitative, and exploratory study has been conducted, which goals pretend to explore, describe and understand the young adult perspective about the autonomy reconstruction process after a self-care dependency triggering stroke. The non structured interview was selected and forwarded to six (6) young adults, who have survived after a stroke. The analysis of the interviews was performed through content analysis. From this last one, nine (9) categories have emerged: points and critical events; health condition alterations; awareness; engagement; personal and social facilitating conditions; personal and social inhibiting conditions; process indicators; outcome indicators and informal care. The results sugest that this pathway begins with a critical event, the stroke, responsible for the modifications in participants` health condition, mostly referring to the self-care performance. Its recovery assumes engagement, which happens when there is awareness of the changes. The living process of the transition is surrounded by a group of factors that might ease up or handicap all this course. Still, it is possible to imply the connection between the participants and the health professionals and with the adaption strategies to the new situation, as well as the existence of result indicators, which basically apply to the social life and mastery. Since each journey is individually experienced, the nurses should adjust their pratice based on the Nursing healing theurapeutics becoming real facilitatiors of the health-disease transition perceived by each stroke survivor, in general, and, in particular, by the young adult.

Thesis: The main contribution of D. Orem's self-care theory is that, using adequate methods, it leads the nurses to respect patients' own conception of self-care. Key words: Patient - nurse relationships, Self-Care Deficit Nursing Theory, D. E. Orem, human actions, respect for autonomy, NANDA taxonomy, non-compliance, responsibility. This dissertation thesis deals with the issues of a relationship between a patient and a healthcare worker, or more precisely a nurse, all from the point of view of patient self-care in the sense of deliberate action that is conducted by the patient for the purpose of sustaining their health and realizing their life plans. Ethical aspects of Orem's Self-Care Deficit Theory consist in the approach to a person that emphasizes the human nature of a human being that develops within the community - among other people, that becomes unique and that cares about their own being. Self-care deficit nursing theory is compared to NANDA taxonomy II with respect to a patient's autonomy. Both approaches to nursing care are studied from the point of view of their assumptions, theoretical basis, the diagnostic process, communication, personal competence of nurses and the aims of health care. Attention is also paid to the situations when a patient is not willing to take part in the...

A saúde encontra-se perante um novo paradigma, impulsionado por uma necessidade sócio-económica de mudança, onde o auto-cuidado é visto como um recurso escondido na sociedade, para suplantar a falência dos sistemas de saúde face ao envelhecimento da população. A enfermagem encaixa-se perfeitamente neste modelo, pois mantém a atitude de estabelecer parcerias com o cliente/família no sentido de os ajudar a atingir e a melhorar o projecto de saúde que traçaram, investindo na investigação para desenvolver conhecimento científico que sirva de base à profissionalização dos cuidados de enfermagem centrados nas respostas dos clientes às transições que vivenciam. Seguindo esse trajecto opta-se por estudar o fenómeno do autocuidado, restringindo-o à satisfação das actividades de vida diária que são comuns a todas as pessoas. A investigação realizada nesse domínio, apesar de muito extensa em algumas áreas específicas, revelou-se escassa relativamente à existência de estudos substantivos que expliquem o fenómeno da perda da autonomia face ao autocuidado, em contexto domiciliar, após um evento gerador de dependência. Perante tal evidência, realizou-se um estudo de natureza qualitativa, exploratório-descritivo, adoptando a metodologia para gerar uma Grounded Theory com o intuito de explorar o fenómeno em contexto domiciliar, esperando que o conhecimento desenvolvido possa ajudar a melhorar os cuidados de enfermagem. A selecção dos participantes foi realizada em contexto hospitalar (no período de internamento após o evento gerador de dependência), sendo que a recolha de dados teve início (recorrendo à técnica de observação participante) após o seu regresso a casa, optando-se por indivíduos com dependência, pela primeira vez, no autocuidado relativo às actividades de vida diária. O estudo revela que perante situações de vulnerabilidade relativamente ao autocuidado, os indivíduos vêem-se obrigados a iniciar processos de transição. Nessas situações, emergem diversos factores intrínsecos (atributos do sujeito; status psicológico; e conhecimento) e extrínsecos (apoio social; status económico; a sociedade; e a tradição) ao sujeito que interferem com essa vivência, originando respostas (indicadores de processo) que são utilizadas pelos enfermeiros para adequarem as terapêuticas de enfermagem. Por fim, os resultados surgem revelando uma vivência salutar da transição, que não são mais que o ponto de partida para uma nova realidade.
Health is facing a new paradigm, driven by a need for socio-economic change, where self-care is seen as a hidden resource in society, to overcome the failure of health systems in an aging population. Nursing fits perfectly into this model because it maintains the attitude of partnering with clients / families to help them reach and improve the health project that outlined by investing in research to develop scientific knowledge as a basis for professionalisation nursing care focused on customer responses. Following this route option is to study the phenomenon of self-care, restricting it to the satisfaction of the activities of daily living that are common to all people. The research in this area, although very large in some specific areas, proved to be low on the existence of substantive studies to explain the phenomenon of loss of autonomy regarding self-care in home care after an event resulting in dependency. Faced with such evidence, there was a qualitative study, exploratory and descriptive, adopting a methodology to generate a Grounded Theory in order to explore the phenomenon in domestic settings, hoping that the knowledge developed may help to improve nursing care. The selection of participants was held in the hospital (the hospital stay after the event resulting in dependency), and the data collection started (using the technique of participant observation) after his return home, opting for individuals with dependence, for the first time in self-care on the activities of daily living. The study shows that in situations of vulnerability in relation to self, individuals are forced to start the transition process. In these situations, several factors emerge from intrinsic attributes (the subject's psychological status, and knowledge) and extrinsic factors (social support, economic status, society, and tradition) to the subject that interfere with this experience, resulting in responses (process indicators) that are used by nurses to adapt the therapeutic nursing. Finally, the results are denouncing a salutary experience of transition, which are no longer the starting point for a new reality.

Résumé Le pourcentage d’enfants et d’adolescents vivant avec une condition chronique qui atteint l’âge adulte a augmenté de façon significative au cours des dernières décennies grâce, notamment, aux avancées en médecine, donnant lieu à la question de transition du milieu hospitalier pédiatrique au milieu hospitalier adulte. Cette transition est décrite par plusieurs chercheurs et cliniciens comme étant un processus complexe pouvant être associé à des difficultés importantes, tel qu’un manque d’adhérence au suivi médical. Malgré les nombreux écrits sur cette problématique, peu d’études longitudinales ancrées dans un contexte théorique ont été réalisées. Le but de cette thèse est d’identifier des facteurs susceptibles de faciliter l’expérience de transition de patients atteints de diabète et de patients greffés rénaux en utilisant une méthodologie longitudinale ainsi qu’en se basant sur un contexte théorique défini et pertinent à la transition de l’adolescence à la vie adulte ainsi qu’à la prise en charge médicale. La thèse est présentée sous forme de trois articles scientifiques. Le premier article examine le développement identitaire, une tâche centrale pendant la période de l’adolescence. Selon la théorie de l’identité d’Erikson (1963) et de Marcia (1966), une identité achevée, caractérisée par un sentiment de soi cohérent établi suite à une exploration, peut aider l’individu à naviguer les obstacles de l’âge adulte. La transition des soins du milieu hospitalier pédiatrique au milieu hospitalier adulte coïncidant avec le passage à l’âge adulte, il est important d’acquérir une bonne compréhension du développement identitaire d’adolescents atteints d’une condition chronique ainsi que du contexte dans lequel leur identité se développe. Dans le cadre de cet article, le développement identitaire et la qualité de vie de 85 adolescents atteints de diabète de type 1 ou ayant reçu une greffe rénale ont été comparé à ceux de 90 adolescents en santé. Au plan identitaire, des analyses de variance ont démontré des différences significatives dans le développement de l’identité idéologique. Précisément, les résultats démontrent un niveau plus élevé de diffusion chez les patients ainsi qu’un niveau plus élevé de forclusion dans le groupe contrôle. En revanche, aucune différence entre les deux groupes n’a été détectée au niveau de l’identité interpersonnelle. De façon similaire, le groupe des patients et le groupe contrôle ont démontré des résultats comparables aux plans de la qualité de vie, de la perception de contrôle sur celle-ci, ainsi qu’au plan de la perception des opportunités à croître et se développer. Les résultats du développement identitaire sont discutés et mis en lien avec la qualité de vie rapportée par le groupe de patients. Le deuxième article consiste en une recension de la littérature ayant pour buts de résumer systématiquement les études en transition basées sur la perspective des patients et d’identifier les facteurs pouvant faciliter l’expérience de transition au milieu hospitalier adulte. À l’aide de la méthodologie du méta-résumé, nous avons procédé à l’extraction, au regroupement et à l’abstraction de résultats provenant de 46 études qualitatives ou de nature descriptive portant sur la transition de patients. Les résultats ont été divisés en quatre catégories, notamment (1) les sentiments et les préoccupations des patients, (2) les recommandations apportées par les patients, (3) les résultats suite au transfert en milieu adulte et (4) l’impact des différents modes de transfert utilisés. Enfin, les résultats de l’article sont discutés dans un cadre théorique de transition qui met l’emphase sur des conditions précises pouvant assurer une transition réussie. Le troisième article a pour objectif d’utiliser une théorie pour étudier l’expérience de transition d’adolescents atteints d’une condition chronique. Étant donné l’importance accordée à l’environnement médical par les patients ainsi que les différences importantes qui existent entre le milieu hospitalier pédiatrique et le milieu hospitalier adulte, la théorie de l’auto-détermination a été sélectionnée. Selon cette théorie, la perception de soutien de l’autonomie de la part du personnel médical est intimement liée à une plus grande motivation et un sentiment de compétence chez les patients à l’égard de leur routine de soins, ainsi qu’à une meilleure adhérence au traitement. Guidés par cette théorie, nous avons suivi l’expérience de transition de patients atteints d’un diabète de type 1 ou de patients ayant reçu une greffe de rein 6 mois avant leur transfert (n= 85) ainsi que 6 mois (n= 49) et un an (n= 36) après leur transfert au milieu adulte. Les résultats révèlent que les patients se sentent généralement prêts à transférer. Suite au transfert, une baisse est enregistrée dans la perception du soutien de l’autonomie des patients. En revanche, un an suite au transfert, les patients rapportent un plus grand sentiment de choix ainsi que la perception d’une plus grande adaptation au milieu adulte. Enfin, les résultats démontrent qu’un plus grand sentiment de soutien de l’autonomie est associé à des niveaux plus élevés de satisfaction, de motivation, de compétence, et de perception d’adhérence au traitement. Les implications pratiques de cette étude sont soulignées.
Abstract The percentage of children and adolescents with a chronic condition who reach adulthood has increased significantly in past decades due to improvements in medicine and has given rise to the question of transition from child-centered care (CCC) to adult-centered care (ACC). Transition of care has been described by researchers and clinicians as a complex process that can be associated with important challenges, such as a lack of adherence to treatment in ACC. Despite the numerous writings on the subject, there is a dearth of longitudinal studies based on a contextual framework. The main goal of the present thesis is to identify factors that can facilitate patients’ transition experience by using a longitudinal methodology and by anchoring the research in a well-defined contextual framework. The thesis is comprised of three scientific articles. The first article examined identity development, a central task of adolescence. Identity achievement, in contrast to identity diffusion, is characterized by a coherent sense of who one is following a period of exploration and can help navigate the challenges of adulthood. This study examined identity within a quality of life (QOL) context in 85 adolescents with a renal transplant or Type 1 diabetes in comparison to 90 healthy controls. Results revealed significant différences in ideological identity, with patients showing higher levels of diffusion and controls showing higher levels of foreclosure. The study revealed no differences with respect to interpersonal identity, QOL, perceived control over the QOL domains, and perceived opportunities for growth and development. The results of identity development are discussed and put in perspective based on patients’ self-reported QOL. The second article is a literature review that aimed to systematically summarize transition studies on patients’ perspective and, based on these results, identify factors that facilitate transition to ACC. Using a metasummary methodology, we extracted, grouped, and abstracted the findings from 46 qualitative and descriptive quantitative studies involving patients before and/or after their transfer to ACC. Empirical results on transition fell into four groups: (1) patients’ feelings and concerns; (2) patients’ recommendations about transition; (3) outcomes after transfer; and (4) mode of transfer. Our results are discussed within a theoretical transition framework that emphasizes the importance of fulfilling conditions that can lead to a successful transition. The main objective of the third article was to gain a better understanding of adolescent patients’ transition experience from CCC to ACC in light of a pre-determined theory. Given the importance awarded by patients to their medical environment, the self-determination theory was chosen. According to the self-determination theory, patients who perceive their health care environment as autonomy supportive will feel motivated and competent to manage their condition and will show increased adherence to their treatment. We followed the transition experience of patients with Type 1 diabetes or a renal transplant 6 months before (n= 85), and 6 months (n= 49) and one year (n= 36) after their transfer to ACC. The results revealed that patients generally felt ready to transfer. Following transfer, there was a decline in patients’ perception of autonomy support. In contrast, one year following transfer, patients reported a significant increase in their sense of choice and their adaptation to ACC. Higher levels of autonomy support were also associated with feelings of satisfaction, motivation, competence and self-reported adherence. The practical relevance of this study is discussed.

O presente estudo, foi desenvolvido com jovens dos 16 aos 21 anos em sistema de acolhimento. A amostra foi recolhida em Lares de Infância e Juventude do distrito de Braga e Viana do Castelo. Considerando as necessidades relativas à falta de instrumentos de competências de vida dos jovens adultos em situação de transição da medida de acolhimento institucional para a autonomia, o estudo incidiu-se na vertente da autonomização e no desenvolvimento de competências de vida do jovem adulto, neste contexto. Os objetivos gerais do estudo prenderam-se com a tradução e adaptação da língua e de constructo do Casey Life Skills (Nolan, Wolf, Ansell, Burns, Barr, Copeland & Paddock, 2000) – Escala de Competências de Vida (Gonçalves, Macedo, Pinto & Azeredo, 2016) através de uma entrevista reflexiva com técnicos da área. Depois da aplicação da Escala de Competências de Vida foi realizada uma primeira caracterização da população em questão, relativamente, às subescalas de competências de vida diária, competências de autocuidado e competências de habitação e gestão do dinheiro. Verificámos que os jovens não apresentam diferenças significativas relativamente ao género, à idade e à duração do acolhimento, nas subescalas em questão.
The present study was developed with young forest adults with ages between 16 and 21 years old. The sample was collected from Lares de Infância e Juventude from the district of Braga and Viana do Castelo. Considering the needs related to the lack of life skills instruments for young adults who are transitioning from institutional host to autonomy, the study focused on the autonomy dimension and the development of life skills of the young adult, in this context. The overall objectives of the study were to translate and adapt the language and construct of Casey Life Skills (Nolan, Wolf, Ansell, Burns, Barr, Copeland & Paddock, 2000)- Life Skills Scale (Gonçalves, Macedo, Pinto & Azeredo, 2016) through a reflective interview with technicians of the area. After the application of the Life Skills Scale, a first characterization of the population in question was carried out, related to the subscales of daily life, self-care and housing and money management skills. We verified that this young adults did not show significant differences relatively to the gender, age and the duration of the hosting, on the subscales in question.

Entre as doenças crónicas, as doenças reumáticas, pela sua prevalência e repercussões na população, emergem como uma prioridade, requerendo, como tal, compreensão e preparação dos profissionais de saúde, em particular dos enfermeiros, de modo a que os cuidados e respostas sejam atempados e adequados. Estas doenças são responsáveis por perdas significativas de autonomia e capacidades de desempenho, em especial nas atividades de autocuidado. Temos como grande questão de investigação, compreender em que medida as perceções da ‘condição de saúde’ – abrangendo as representações em relação à saúde, à doença, à dor, ao corpo, às limitações impostas pela doença e aos sentimentos habituais –, entre pessoas com doença reumática, variam de acordo com a sua autonomia e o perfil de autocuidado. Pretende-se, assim, compreender e analisar as representações da ‘condição de saúde’ entre pessoas com doença reumática, bem como perceber qual o impacto da doença no autocuidado, identificar os perfis de autocuidado e as associações mais relevantes entre as representações encontradas. Para compreendermos o modo como as pessoas se sentem, pensam e se comportam habitualmente, num contexto psicossocial, enquadrámos esta investigação empírica na teoria das representações sociais, desenvolvida por Moscovici, e articulando-a com o modelo de perfis de autocuidado de Backman e Hertinen. A investigação empírica engloba duas fases. A primeira, fase exploratória, é constituída por quatro estudos, em que utilizamos uma metodologia essencialmente qualitativa, e na segunda, fase inferencial, recorremos a uma metodologia quantitativa. Os dados foram recolhidos em instituições de saúde com serviços de reumatologia, entre uma população de adultos e idosos, de ambos os sexos, com idade média de 68 anos. Na fase exploratória, foram realizados três grupos de foco e um extenso estudo exploratório – com várias questões abertas relativas à condição de saúde – sendo o principal objetivo determinar as dimensões significantes que estruturam as representações da ‘condição de saúde’. Os resultados obtidos nesta fase serviram de base à construção de várias das escalas incluídas no questionário desenvolvido, como instrumento de medida, para a recolha de dados, no estudo inferencial. Este permitiu-nos testar a coerência dos resultados antes obtidos, e complementá-los, bem como verificar a influência das pertenças sociais nas representações encontradas, averiguar os perfis de autocuidado no seio da população estudada, e correlacionar estes perfis com as representações relativas à ‘condição de saúde’, encontrando associações relevantes. Os resultados obtidos evidenciam que a doença e a dor que se lhe associa, são sentidas como devastadoras, com fortes implicações na condição de saúde de cada pessoa, assim como os sentimentos negativos que são comuns, interferem na gestão do autocuidado. As mulheres tendem a mostrar maior insatisfação com a sua condição de saúde do que os homens. Os mais velhos e os que estão doentes há mais tempo são, em geral, os mais insatisfeitos. Encontrámos vários tipos de perfil de autocuidado, em especial, perfis do tipo responsável, formalmente guiado e independente. Os homens, tal como os sujeitos mais novos e doentes há menos tempo, têm um perfil que é tipicamente responsável e independente. As mulheres, assim como os mais novos e os doentes há menos de 10 anos, revelam, sobretudo, um perfil formalmente guiado. Torna-se imperioso compreender as representações da condição de saúde entre pessoas com doença reumática, assim como, conhecer o modo como gerem o autocuidado, permitindo assim, aos enfermeiros, conhecer o potencial de autonomia e as necessidades de cada pessoa, permitindo intervir e responder mais adequadamente aos seus problemas, ajudando-as a gerir, com dignidade, a sua condição. Nesse sentido, o perfil de autocuidado é uma área sensível aos cuidados de enfermagem, constituindo um desafio para futuras investigações.
From all the chronic illnesses, rheumatic diseases, due to its prevalence and impact on the population, emerge as a priority, and health professionals, especially nurses, should address it with appropriate and competent responses. These diseases are accountable for significant losses of autonomy and performance capability, particularly in self-care behaviors. Our aim is to understand to what extent the perception of health condition covering the representations concerning health, disease, pain, body awareness, limitations imposed by the disease and feelings, among patients with this condition, varies according to their autonomy and their self-care profile. It is intended, therefore, to analyze the representations of the health status, among people with arthritis and to verify the impact of the illness on their self-care activities as well as to describe the most relevant associations between representations and the typical self-care profiles in this population. In an effort to comprehend how people feel, think and behave on daily basis, Moscovici’s social representations theory was articulated with Backman and Hertinen model of self-care profile. Empirical research comprised two different segments. In the first one, exploratory, four qualitative studies were conducted and in the second inferential, we resorted to a quantitative approach. Data was collected in health institutions with rheumatology services, using a population of older adults, average age of 68 years, both genders. In the exploratory phase, three focus-group and an extensive exploratory study were carried in order to retrieve and explore, through several open-questions, significant and structural dimensions of the representations of the health condition. These results were then used to assemble various scales included in the questionnaire which made possible to measure and gather data for the inferential study. This allowed us not only to test the consistency of our qualitative material, but also to find additional information, investigate the influence of social belongings in this particular population, determine the typical self-care profiles and to correlate these with the representations of the health condition. Results elucidate that the disease, and the pain associated with it, is experienced as devastating, with strong implications for individual health condition and negative feelings like sadness, discouragement and loneliness, are common and interfere with self-care management. Women tend to show greater dissatisfaction with their health condition than men. The older and the long-time rheumatic are, in general, the most dissatisfied. Several types of self-care profiles were found, namely: responsible, formally guided and independent types. Men, as well as younger and short-time patients, exhibit profiles that is predominantly responsible and independent. Women as well as younger and short-time patients express, above all a formally guided profile. Knowing how rheumatic patients perceive their condition, themselves, and their feelings, as well as how they manage their self-care, empowers nurses to potential the autonomy and to address the needs of each patient, enabling action and a more adequate response to these patient problems, helping them to cope with the disease with dignity. In this sense, self-care profiles are a sensitive and important area for nursing care and can be a challenge for future research.

The author of the thesis formulates theoretical starting points, which draws attention to the problems of the health care system. It emphasizes the role of the individual and describes the mechanism by which it is possible to naturally and freely intervene in the health insurance system. A key role in this mechanism is provided by health insurers, which have the potential to moderate the relationship of the insured with the health system. The health insurer can do so by segmenting their insured and product orientation. The construction of the "ideal insured" should contribute to the this segmentation. The construction is based on the active and autonomous approach of the insured, these qualities are highly valued in the theory presented and it is assumed that this approach is desirable in terms of prevention. The author has created a tool to measure this construct. The tool is in the form of a questionnaire that is systematicaly reduced to include as few items as possible so it can be easily used in practice. Practical usability is the primary goal of creating this instrument to measure "ideal insured".

There are thousands of desperate people globally who need a kidney for transplantation. The number of people who require a kidney transplant continues to escalate faster than the number of kidneys available for a transplant. The aim of this dissertation is to examine and analyse the judicial framework pertaining to kidney transplants in South Africa. The examination is conducted within the framework of the South African Constitution and the National Health Act 61 of 2003. The specific focus of this dissertation is to determine whether the payment of kidney donors could be regarded as constitutionally acceptable. A comparative study is undertaken, with Singapore and Iran as a background against which recommendations for the South African regulatory framework are made. The most important finding is that people should at least be granted the choice whether they would prefer to receive payment for their kidney donations or not.
Jurisprudence
LL.M.