The purpose of this study was to explore the relationship of family spiritual interdependence to the well-being of elders and their family caregivers within Korean family caregiving situations. The correlation of spirituality and well-being between elders and caregivers and the actor and partner effect of spirituality on well-being were examined in terms of how family members' spirituality influences their own and partners' well-being.One hundred fifty-seven Korean elder-family caregiver dyads in Seoul, Korea participated and completed independently three spirituality instruments and four well-being instruments independently: Spiritual Perspective Scale (Reed, 1987), Self-Transcendence Scale (Reed, 1986) and Purpose in Life (Crumbaugh, 1968), Center for Epidemiological Studies-Depression Scale (Radloff, 1977), Satisfaction With Life Scale (Diener, et al., 1985) and Positive And Negative Affect Schedules (Watson et al., 1988).The correlations were performed to identify whether demographic variables significantly related to study variables. Several variables regarding family and social interactions related significantly to spirituality and well-being in both elder and caregiver group.The correlations of spirituality and well-being between elders and caregivers reported that elders' spirituality significantly related to caregivers' spirituality and caregivers' well-being significantly related to elders' well-being.The actor and partner effects of spirituality on well-being between elders and caregivers were tested using the Actor-Partner-Interdependence Model (Kashy & Kenny, 2000; Kenny, 1996). The results found that there were significant actor effects. First, spiritual perspective negatively influenced their own positive affect. Self-transcendence positively predicted their own depression and negative affect. Also, Self-transcendence positively predicted their satisfaction with life and positive affect. In addition, purpose in life negatively influenced their own depression and negative affect. Purpose in life positively influenced their own satisfaction with life and positive affect.There was a significant partner affect. Self-transcendence positively predicted their partner's depression. Also, self-transcendence positively influenced their partner's positive and negative affect. There were no significant partner effects from spiritual perspective and purpose in life to well-being. These findings indicate that the health and well-being of family members may be best understood within the context that includes the spiritual dimension of caregiving, particularly the concept of self-transcendence as it relates to several well-being factors.

This study explored the experiences of bereaved family caregivers (FCGs) with uncomplicated grief in hospice palliative care and what they found helpful and challenging in their adjustment to the loss of the person for whom they were caring. The cumulative effects of both caregiving and bereavement can be detrimental to FCGs’ physical, social, and mental well-being. Many FCGs with uncomplicated or normal grief ask for assistance in bereavement. Yet, in the bereavement care literature, there is uncertainty about what may be beneficial to them and how best to support them. An interpretive descriptive design was used for this study of eleven bereaved FCGs with uncomplicated grief. The FCGs included five daughters, 5 spouses (2 wives, 2 husbands, 1 same-sex partner), and one sibling who had cared for a dying family member and who ranged in age from 23 to 76 years. All participants resided in the Vancouver Island Health Authority – South Island region. Data were collected through eleven in-depth interviews and one focus group. Data were analyzed using inductive analysis. The FCGs reported that the impact of loss was experienced as a magnitude of changes in their everyday lives, the loss of the connection with the cared-for person, and changes within themselves. They also reported a need for a safe community in which to grieve where they had quality relationships and/or shared common experiences of loss with others. Finally, the FCGs reported active engagement in their adjustment in bereavement that included such strategies as remembering the person who died, striving for balance, and awareness of personal growth. The findings from this study have the potential to assist health care and other professionals to understand the bereavement experiences of FCGs in hospice palliative care and to inform bereavement care for FCGs with uncomplicated grief.

Tyrimo tikslas – atskleisti artimųjų, slaugiusių sunkiai sergantį šeimos narį iki jo/jos mirties namuose, patirtį. Tiriamas reiškinys – slaugymas iki mirties namuose. Tyrimo klausimai. 1) Kokia yra artimųjų slaugymo namuose sunkiai sergantį šeimos narį patirtis? 2) Kokia yra artimųjų budėjimo namuose šalia mirštančio šeimos nario patirtis? Tyrimo metodai. Kokybinis tyrimas, taikant aprašomosios fenomenologijos strategiją, pagal P. Colaizzi metodą. Duomenys rinkti taikant individualųjį giluminį interviu. Tyrimo dalyviai. 5 artimieji (1 vyras, 4 moterys). Atranka – tikslinė. Atrankos kriterijai: a) artimieji, slaugę sunkiai sergantį suaugusį šeimos narį ir budėję jo/jos mirties momentu namuose; b) artimieji, slaugę šeimos narį ir budėję jo/jos mirties momentu namuose, ne anksčiau nei praėjus vieneriems metams po mirties. Tyrimo rezultatai. Tyrime išryškėjusios temos, kurios atskleidė patirčių esmę – tiriamą reiškinį: 1) Šeimos narys: nesvarbu koks, svarbu, kad tik būtų kartu?; 2) Slaugos namuose motyvai: „namai lieka namais“; 3) Artimųjų palaikymas ir pagalba – „pats svarbiausias dalykas“; 4) Pokyčiai gyvenime: nuo momentinės pagalbos iki priežiūros 24 valandas per parą; 5) Susitaikymas ir „paleidimas“; 6) Mirties akimirka: nuo „visiška ramybė“ iki „blogiausias momentas“; 7) Sveikatos priežiūros specialistai – padedantys arba apsunkinantys esamą situaciją; 8) Sugrįžimas į gyvenimą „be artimųjų slaugymo“. Išvados. Artimieji nusprendę slaugyti sunkiai sergantį šeimos narį... [toliau žr. visą tekstą] / Reseach purpose – to reveal the family caregivers’ experience of caring a seriously ill family member till his/her death at home. Studied phenomenon – caring a seriously ill family member till his/her death at home. Research questions. 1) What kind of experience have the family caregivers got of caring a seriously ill family member till his/her death at home? 2) What kind of experience have family caregivers got while caring a dying family member? Research methods. Qualitative research, with applied descriptive phenomenology strategy, on the base of P. Colaizzi method. Data has been collected by in-depth interviewing, asking two research questions. Research participants. 5 family caregivers (1 male, 4 female). Selection – target, selection criteria: a) family caregivers who took care of a seriously ill adult family member till his/her death at home; b) family caregivers who took care of a seriously ill adult family member at home, no earlier than a year after he/she had passed. Research results. The following themes have emerged: 1) Family Member: no matter how he or she is, it is important to have one beside; 2) Home care motivation: “home is home”; 3) Family members’ assistance and support – “the most important thing”; 4) Changes in care needs: from instant help to care 24 hours a day; 5) Reconciliation and acknowledging the full reality of the loss; 6) The moment of death: from “total peace” to the “worst moment”; 7) Health care professionals – whether they help or hinder... [to full text]

Kvarboendeprincipen innebär att den äldre sjuka individen ska ha möjlighet att kunna bo kvar i sitt ordinära boende med hjälp av hemtjänst eller anhöriga. Ofta fyller anhöriga funktionen som vårdare och är en förutsättning för kvarboende i hemmet för personer med demens.Rapporter visar på svårigheter och ökad belastning för anhöriga. Syftet var att undersöka vilka konsekvenser kvarboende i hemmet kan ha för anhöriga till personen med demens. Metod var en integrerad litteraturstudie. Efter urval och kvalitetsgranskning återstod tolv artiklar som användes i resultatet. Elva artiklar var kvantitativa och en artikel var mixad metod. I resultatet framkom fyra kategorier: Anhörigvårdarna kände börda, Vårdandet övergick i psykisk ohälsa, BPSD inverkade på anhörigas livskvalité, Behov av hjälp utifrån. Konklusion: Varaktigheten i vårdandet samt om personen med demens hade BPSD var av betydelse för om anhörigvårdarna utvecklade känslan av börda, psykisk ohälsa samt om de var i behov av hjälp utifrån. Stöd och utbildning till anhörigvårdarna i tidigt skede kan bidra till att anhörigvårdarna orkar vårda längre i det ordinära boendet. / In Sweden remaining living at home principle means that the older sick individual should have the opportunity to stay in their ordinary home with the    help of home care services or relatives. The family members often act as a caregiver and is a prerequisite for remaining living at home for people with dementia. Reports show the difficulties and increased burden for the relatives.The aim of the study was to investigate the consequences remaining living at home can have for relatives of the person with dementia. Method: An integrated literature study was used as a method. After selection and quality assessment remained twelve articles used in the result. Eleven articles were quantitative and one article were a mixed approach.The results revealed four categories: Family caregivers felt burden, Caring were turned into mental illness, BPSD impact on family members' quality of life, Taking  care from outside health providers.Conclusion: The duration of the treatment process as well as the person with dementia had BPSD was relevant to whether carers developed sense of burden, mental illness and were in need of outside help. Education and support for carers in the early stage of the illness, may help family caregivers to give informal caregiving longer in regularhousing.

O envelhecimento populacional é um processo universal, que não afeta apenas o indivíduo, mas também a família e a sociedade. No Brasil, o número de idosos está crescendo, o que torna necessário discutir sobre o exercício do cuidado destinado ao sujeito idoso, sobretudo o hospitalizado, bem como as perspectivas que este possui a respeito de si mesmo, dos familiares e dos profissionais cuidadores. O objetivo geral desta pesquisa qualitativa consistiu, assim, em conhecer e compreender a percepção do sujeito idoso hospitalizado a respeito de si mesmo e dos cuidadores familiares e profissionais. Foram sujeitos da pesquisa 19 idosos hospitalizados, com 60 anos ou mais, capazes de responder às questões aplicadas oralmente, a partir de um roteiro prévio, após várias observações, no período de 2007 e 2008, numa instituição hospitalar privada do RS. Tais respostas foram analisadas com base nas seguintes noções: conceitos e preconceitos relativos ao sujeito idoso; o autocuidado e o cuidado prestado por familiares e profissionais; perda de autonomia e institucionalização: a relação do idoso com o profissional cuidador; profissionais cuidadores da área da saúde; o profissional cuidador e a profissional cuidadora: a desigualdade entre os gêneros; qualidade de vida e saúde dos profissionais "cuida(dores)"; o surgimento dos hospitais; a ética, o SUS e as políticas públicas de saúde do idoso. Por meio da análise dos conteúdos, chegou-se a quatro categorias, definidas pelas respostas e não pelas questões: 1) "o idoso fala sobre si e sua doença"; 2) "a percepção do idoso com relação ao cuidador: os âmbitos familiar e profissional"; 3) "percepção do idoso em relação à instituição hospitalar"; 4) "percepção do idoso com relação aos seus direitos e deveres". A partir das respostas analisadas, concluiu-se que muitos sujeitos idosos não tinham clareza sobre a "sua" patologia; verificou-se a esperança em relação à vida e à cura de sua doença geralmente associada à religiosidade e à fé; esteve presente, ainda, a preocupação de se constituir um paciente permanente, com dependência irreversível dos medicamentos ou dos "cuida(dores)", perdendo, assim, a sua autonomia como sujeito. Em relação à instituição, embora tenha se constatado um atendimento ético e parcimonioso, nem sempre isso foi evidenciado pelos sujeitos idosos. O idoso com patologias graves referiu sentir-se mais seguro no hospital por ter ali o apoio técnico indispensável, preferindo, nessa ocasião, o cuidador profissional. Apesar da intenção explícita nas políticas públicas em considerar o idoso como sujeito em uma nova fase de vida, com necessidades e cuidados específicos, verificou-se que os direitos dos idosos ainda são desconhecidos pela sociedade e por eles próprios. A geriatria, a gerontologia e os novos conceitos delas decorrentes não alcançaram, ainda, todos os profissionais cuidadores de idosos, e menos ainda os seus familiares. Daí a urgência de um processo educativo e educador em torno do novo paradigma que busca, entre outras coisas, "pagar uma dívida" para com os idosos e resgatar o sujeito que a modernidade relegou a um lugar periférico e de invisibilidade. / The population ageing is a universal process that does not affect only the individual, but also the family and the community. In Brazil, the number of senior citizens is increasing and because of that it is necessary to discuss about the care of the elderly, especially the hospitalized one, as well as to reflect about their perspectives concerning themselves, the family and the professional caregivers. The goal of this qualitative research was to identify and to comprehend the perception of the hospitalized senior citizen concerning themselves, their family and the professional caregiver. The research subjects were 19 hospitalized senior citizens - 60 years old or more - who were able to answer the oral interviews, which were performed, based on a previous script and after several observations, in the period of 2007 and 2008, in a private hospital in the state of Rio Grande do Sul. The criteria used to subdivide the analysis in four categories were defined by the answers and not by the questions. Here they are: Talking about the senior citizens: some concepts and prejudices; The auto-care and the care rendered by family and professionals; Loss of autonomy and institutionalization: the relationship between the elder and the caregiver; Professional caregiver in the health area; From the female caregiver to the male one: the inequality between the genders; Life quality and the caregiver’s health; The hospitals beginning; Ethics and public health policies for the elderly. By the analysis of the contents, four categories were identified: first - "the elder speaks about himself and his disease"; second - "the perception of the elder regarding the caregiver: the familiar and professional scope"; third - "the perception of the elder regarding the hospital institution"; fourth - "the perception of the elder regarding their rights and duties." Based on the analysis realized, it was possible to conclude that many senior citizens did not have clearness about their pathology; the hope regarding life and the cure of the disease was almost associated to the religiosity and faith; the preoccupation of being a permanent patient, with irreversible dependence of medicines or caregivers, losing, thus, their autonomy. Considering the institution, although it was verified an ethical and parsimonious assistance, it was not always evidenced by the senior citizens. The ones with serious pathologies affirm to feel safer in hospital because of its indispensable technical support, desiring, so, the professional caregiver. Besides the explicit intention in the public policies of considering the senior citizen someone in a new phase of life, with specific needs and cares, it was not always verified, making it possible to believe that the rights of the elderly are still unknown by society and also themselves. The geriatrics and gerontology specialties and their new concepts have not reached, yet, all the senior caregivers or families. From that situation, there is the urgency of an educational process around the new paradigm that aims, among other things, to "pay a debt" to the senior citizen, rescuing the individual that modernity has relegated to a peripheral and invisible place.

O envelhecimento populacional é um processo universal, que não afeta apenas o indivíduo, mas também a família e a sociedade. No Brasil, o número de idosos está crescendo, o que torna necessário discutir sobre o exercício do cuidado destinado ao sujeito idoso, sobretudo o hospitalizado, bem como as perspectivas que este possui a respeito de si mesmo, dos familiares e dos profissionais cuidadores. O objetivo geral desta pesquisa qualitativa consistiu, assim, em conhecer e compreender a percepção do sujeito idoso hospitalizado a respeito de si mesmo e dos cuidadores familiares e profissionais. Foram sujeitos da pesquisa 19 idosos hospitalizados, com 60 anos ou mais, capazes de responder às questões aplicadas oralmente, a partir de um roteiro prévio, após várias observações, no período de 2007 e 2008, numa instituição hospitalar privada do RS. Tais respostas foram analisadas com base nas seguintes noções: conceitos e preconceitos relativos ao sujeito idoso; o autocuidado e o cuidado prestado por familiares e profissionais; perda de autonomia e institucionalização: a relação do idoso com o profissional cuidador; profissionais cuidadores da área da saúde; o profissional cuidador e a profissional cuidadora: a desigualdade entre os gêneros; qualidade de vida e saúde dos profissionais "cuida(dores)"; o surgimento dos hospitais; a ética, o SUS e as políticas públicas de saúde do idoso. Por meio da análise dos conteúdos, chegou-se a quatro categorias, definidas pelas respostas e não pelas questões: 1) "o idoso fala sobre si e sua doença"; 2) "a percepção do idoso com relação ao cuidador: os âmbitos familiar e profissional"; 3) "percepção do idoso em relação à instituição hospitalar"; 4) "percepção do idoso com relação aos seus direitos e deveres". A partir das respostas analisadas, concluiu-se que muitos sujeitos idosos não tinham clareza sobre a "sua" patologia; verificou-se a esperança em relação à vida e à cura de sua doença geralmente associada à religiosidade e à fé; esteve presente, ainda, a preocupação de se constituir um paciente permanente, com dependência irreversível dos medicamentos ou dos "cuida(dores)", perdendo, assim, a sua autonomia como sujeito. Em relação à instituição, embora tenha se constatado um atendimento ético e parcimonioso, nem sempre isso foi evidenciado pelos sujeitos idosos. O idoso com patologias graves referiu sentir-se mais seguro no hospital por ter ali o apoio técnico indispensável, preferindo, nessa ocasião, o cuidador profissional. Apesar da intenção explícita nas políticas públicas em considerar o idoso como sujeito em uma nova fase de vida, com necessidades e cuidados específicos, verificou-se que os direitos dos idosos ainda são desconhecidos pela sociedade e por eles próprios. A geriatria, a gerontologia e os novos conceitos delas decorrentes não alcançaram, ainda, todos os profissionais cuidadores de idosos, e menos ainda os seus familiares. Daí a urgência de um processo educativo e educador em torno do novo paradigma que busca, entre outras coisas, "pagar uma dívida" para com os idosos e resgatar o sujeito que a modernidade relegou a um lugar periférico e de invisibilidade. / The population ageing is a universal process that does not affect only the individual, but also the family and the community. In Brazil, the number of senior citizens is increasing and because of that it is necessary to discuss about the care of the elderly, especially the hospitalized one, as well as to reflect about their perspectives concerning themselves, the family and the professional caregivers. The goal of this qualitative research was to identify and to comprehend the perception of the hospitalized senior citizen concerning themselves, their family and the professional caregiver. The research subjects were 19 hospitalized senior citizens - 60 years old or more - who were able to answer the oral interviews, which were performed, based on a previous script and after several observations, in the period of 2007 and 2008, in a private hospital in the state of Rio Grande do Sul. The criteria used to subdivide the analysis in four categories were defined by the answers and not by the questions. Here they are: Talking about the senior citizens: some concepts and prejudices; The auto-care and the care rendered by family and professionals; Loss of autonomy and institutionalization: the relationship between the elder and the caregiver; Professional caregiver in the health area; From the female caregiver to the male one: the inequality between the genders; Life quality and the caregiver’s health; The hospitals beginning; Ethics and public health policies for the elderly. By the analysis of the contents, four categories were identified: first - "the elder speaks about himself and his disease"; second - "the perception of the elder regarding the caregiver: the familiar and professional scope"; third - "the perception of the elder regarding the hospital institution"; fourth - "the perception of the elder regarding their rights and duties." Based on the analysis realized, it was possible to conclude that many senior citizens did not have clearness about their pathology; the hope regarding life and the cure of the disease was almost associated to the religiosity and faith; the preoccupation of being a permanent patient, with irreversible dependence of medicines or caregivers, losing, thus, their autonomy. Considering the institution, although it was verified an ethical and parsimonious assistance, it was not always evidenced by the senior citizens. The ones with serious pathologies affirm to feel safer in hospital because of its indispensable technical support, desiring, so, the professional caregiver. Besides the explicit intention in the public policies of considering the senior citizen someone in a new phase of life, with specific needs and cares, it was not always verified, making it possible to believe that the rights of the elderly are still unknown by society and also themselves. The geriatrics and gerontology specialties and their new concepts have not reached, yet, all the senior caregivers or families. From that situation, there is the urgency of an educational process around the new paradigm that aims, among other things, to "pay a debt" to the senior citizen, rescuing the individual that modernity has relegated to a peripheral and invisible place.

Submitted by Daniele Amaral (daniee_ni@hotmail.com) on 2016-09-30T20:35:29Z No. of bitstreams: 1 DissESR.pdf: 5088138 bytes, checksum: 964f1f2418b63eb857caf1f0b778f8c7 (MD5) / Approved for entry into archive by Marina Freitas (marinapf@ufscar.br) on 2016-10-10T17:38:42Z (GMT) No. of bitstreams: 1 DissESR.pdf: 5088138 bytes, checksum: 964f1f2418b63eb857caf1f0b778f8c7 (MD5) / Approved for entry into archive by Marina Freitas (marinapf@ufscar.br) on 2016-10-10T17:38:50Z (GMT) No. of bitstreams: 1 DissESR.pdf: 5088138 bytes, checksum: 964f1f2418b63eb857caf1f0b778f8c7 (MD5) / Made available in DSpace on 2016-10-10T17:38:58Z (GMT). No. of bitstreams: 1 DissESR.pdf: 5088138 bytes, checksum: 964f1f2418b63eb857caf1f0b778f8c7 (MD5) Previous issue date: 2016-02-17 / Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) / Population aging is a global phenomenon related to changes in family structures and functions that bring consequences to the elderly, such as: change in living conditions, challenges in the care and social support, among others. This study aims to analyze the relationship between care system, social support and the fragility of senior caregivers in the context of high social vulnerability. It is an exploratory and analytical study, using the quantitative method of investigation. The population analyzed consisted of people aged 60 or over, who takes care of the seniors and were registered in the ”Unidades de Saúde da Família” (Public Family Health Units) in a city in the state of São Paulo and who are under the care of “ Núcleo de Apoio a Saúde da Família (NASF)” (Center for Support for Family Health), in the region of ARES “Cidade Aracy” (Aracy City). Interviews were conducted in the homes of elderly caregivers and used the following instruments for data collection: Semi-Structured Interviews, The Addenbrooke's Cognitive Examination Revised (ACE R), Geriatric Depression Scale (GDS), Fragility Assessment according to phenotype Fried, family APGAR, Genogram and ecomap. Most of the caregivers are spouses (83.6%), carefully time 1-4 years (46.5%) and spending one to four hours taking care (52%) of the elderly. The most mentioned institution that assists these seniors was a health institution. The main care provided to the elderly was feeding (82.2%), followed by lead to medical appointments (63.6%). There was a statistically significant association of low-income seniors with worse cognitive performance and the negative influence of the largest number of people living at home with worse results in cognition test. It is necessary to investigate the profile of these caregivers, as most are pre-fragile, and takes care of another pre-fragile elderly. It is noteworthy that the vast majority of the elderly in this study lives in houses with a large number of people, which is common in the context of high social vulnerability and low education; it was found that this factor interferes in the cognitive performance. More studies are necessary in order to investigate the conditions offered by the society and what these seniors, families and their social network can do in favor of a healthy aging. / O envelhecimento populacional é um fenômeno mundial relacionado às mudanças nas estruturas e funções familiares que geram consequências para as pessoas idosas, tais como: mudança nas condições de vida, desafios no cuidado e apoio social, entre outros. Este estudo tem como objetivo analisar a relação entre sistema de cuidado, suporte social e fragilidade de idosos cuidadores em contexto de alta vulnerabilidade social. Trata-se de um estudo exploratório, correlacional, analítico, com a utilização do método quantitativo de investigação. A população foi composta por pessoas com 60 anos ou mais, que cuidavam de idosos e estavam cadastradas nas Unidades de Saúde da Família de um município no interior do estado de São Paulo e que estão na cobertura do Núcleo de Apoio a Saúde da Família (NASF), da região da ARES “Cidade Aracy”. As entrevistas foram realizadas no domicílio dos idosos cuidadores e utilizados como instrumentos para a coleta de dados : Entrevista Semi-Estruturada, The Addenbrooke’s Cognitive Examination Revised (ACE- R), Escala de Depressão Geriátrica (GDS), Avaliação da Fragilidade segundo o fenótipo de Fried , APGAR de família, Genograma e Ecomapa. A maioria dos cuidadores era cônjuge (83,6%), com tempo de cuidado de 1 a 4 anos (46,5%) e despendendo de uma a quatro horas diárias de cuidado com o idoso (52%). A entidade mais citada que auxiliava na prestação do cuidado foi a instituição de saúde. O principal cuidado fornecido ao idoso foi a alimentação (82,2%), seguido por levar a consultas médicas (63,6%). Observou-se associação estatisticamente significante dos idosos de baixa renda com o pior desempenho cognitivo e, também, a influência negativa do maior número de pessoas que residem no domicílio com piores resultados nos teste de cognição. É necessário investigar o perfil destes cuidadores, pois a maioria é pré-frágil, que exerce o cuidado de outro idoso, também, pré-frágil. Chama atenção que a maioria dos idosos deste estudo vive em casas com um grande número de pessoas, o que é comum em contexto de alta vulnerabilidade social e baixa escolaridade, porém, foi encontrado que este fator interfere no desempenho cognitivo. Mais estudos devem ser desenvolvidos buscando aprofundar as condições oferecidas pela sociedade e as que estes idosos, famílias e suas redes sociais podem planejar em favor do envelhecimento saudável.

Well-being is a concept that has aroused multidisciplinary interest. Particularly in studies about family caregivers of older adults there has been the need to analyze this attribute facing the imminent increase of family caregivers. The goal of this paper is to describe the design process, the exploratory and confirmatory validation, as well as the usefulness of the current Scale of Subjective Well-Being of Family Caregivers for Older Adults - EBEMS/ CFAM. Results are shown in a sequence, from qualitative analysis, to factor analysis, Rasch modeling and structural equations in four samples of study that, taken together, confirm the validity and reliability of the scale. / El bienestar es un concepto que ha despertado un interés multidisciplinar y particularmente en la línea de estudios sobre cuidadores familiares de adultos mayores se ha registrado la necesidad de analizar dicho atributo ante el inminente aumento de familias cuidadoras. El objetivo de este trabajo es describir el proceso de diseño, validación exploratoria y confirmatoria, así como la utilidad actual de la Escala de Bienestar Subjetivo para Cuidadores Familiares de Adultos Mayores – EBEMS/CFAM. Se presenta una secuencia de resultados de análisis cualitativos, análisis factoriales, de modelamiento Rasch y ecuaciones estructurales en cuatro muestras de estudio que, en conjunto, confirman la validez y confiabilidad de la escala.

Submitted by Liliane Ferreira (ljuvencia30@gmail.com) on 2018-08-13T13:17:01Z No. of bitstreams: 2 Dissertação - Elvira Alves dos Santos - 2018.pdf: 5113814 bytes, checksum: 4b91947249ad3c3219193fc2d3dbaf66 (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Approved for entry into archive by Luciana Ferreira (lucgeral@gmail.com) on 2018-08-14T11:31:34Z (GMT) No. of bitstreams: 2 Dissertação - Elvira Alves dos Santos - 2018.pdf: 5113814 bytes, checksum: 4b91947249ad3c3219193fc2d3dbaf66 (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Made available in DSpace on 2018-08-14T11:31:35Z (GMT). No. of bitstreams: 2 Dissertação - Elvira Alves dos Santos - 2018.pdf: 5113814 bytes, checksum: 4b91947249ad3c3219193fc2d3dbaf66 (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) Previous issue date: 2018-05-28 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Population aging has been growing around the world in the last decades, with new demands and challenges emerging for society due to the incidence and prevalence of chronic degenerative diseases, while simultaneously being more of a chronic condition, increasing the risk of complications. As a result of these complications that lead the elderly to a process of dependency, it becomes necessary to have someone who assumes the integral care, a role that is usually attributed to a family member, thus constituting the family caregiver. Due to daily tasks, the life of the family caregiver undergoes a series of changes that directly influence their quality of life, which can trigger an increase in levels of anxiety, stress and depression. Music Therapy can act as a non-medicament and complementary treatment modality, taking a bio-psycho-socio-spiritual approach. The present research deals with a case study, of mixed method, with a phenomenological look for the process and an evaluation before-after for the quantitative data. The aim of this study was to evaluate the effects of Music Therapy on the quality of life and levels of anxiety and depression of family caregivers of patients with Alzheimer's disease (AD), as well as their contribution to the development of resilience and coping strategies. A field study was conducted with a closed group composed of two caregivers, with ages of 50 and 60 years old. Twelve sessions of Music Therapy were conducted, which took place every week, lasting sixty minutes each, initially at a Rehabilitation Center in Goiânia, followed by home visits. Before and after the music therapy process, the WHOQOL-BREF (The World Health Organization Instrument for Quality of Life Bref), BDI (Beck Inventory of Depression) and BAI (Beck Anxiety Inventory) evaluation instruments were applied. The results showed an improvement in the levels of depression and anxiety, considering the absolute values of the scores. Regarding the WHOQOL-BREF, there was no improvement, although the participants affirm that they are in the process of improving the quality of life. Qualitative data revealed meanings and meanings of caring and being cared for, as well as the emergence of existing conflicts that, during the music therapy process, were worked on. It is concluded that music therapy, through the musical experiences experienced during the process, mainly music composition, promoted self-expression, improved self-image and greater access to self-knowledge, contributing to the development of resilience and coping strategies, in addition to the other aspects mentioned. / O envelhecimento populacional vem crescendo em todo o mundo nas últimas décadas, surgindo novas demandas e desafios para a sociedade devido a incidência e a prevalência de doenças crônicas degenerativas podendo ser observada, simultaneamente, mais de uma condição crônica, elevando o risco de complicações. Em decorrência dessas complicações que levam o idoso a um processo de dependência, torna-se necessário ter alguém que assuma o cuidado integral, papel que é, geralmente, atribuído a um membro da família, constituindo assim o cuidador familiar. Devido as tarefas cotidianas, a vida do cuidador familiar sofre uma série de alterações que influenciam diretamente sua qualidade de vida, podendo desencadear aumento nos níveis de ansiedade, estresse e depressão. A Musicoterapia pode atuar como uma modalidade de tratamento não medicamentoso e complementar, tendo uma abordagem bio-psico-socio-espiritual. A presente pesquisa trata-se de um estudo de caso, de método misto, com um olhar fenomenológico para o processo e uma avaliação antes-depois para os dados quantitativos. Visa-se avaliar os efeitos da Musicoterapia na qualidade de vida e nos níveis de ansiedade e depressão de cuidadores familiares de pacientes com Doença de Alzheimer (DA), bem como sua contribuição para o desenvolvimento da resiliência e de estratégias de enfrentamento ao estresse. Realizou-se a pesquisa de campo com um grupo fechado composto por dois cuidadores, com idades de 50 e 60 anos. Foram conduzidas doze sessões de Musicoterapia, que aconteceram semanalmente, com duração de sessenta minutos cada, inicialmente em um Centro de Reabilitação de Goiânia, seguidas de atendimentos domiciliares. Antes e após o processo musicoterapêutico foram aplicados os instrumentos de avaliação WHOQOL-BREF (The World Health Organization Instrument to Evaluate Quality of Life Bref), BDI (Inventário Beck de Depressão) e BAI (Inventário Beck de Ansiedade). Os resultados evidenciaram melhora nos níveis de depressão e ansiedade, considerando os valores absolutos dos scores. Quanto ao WHOQOL-BREF, não houve melhora, apesar de os participantes afirmarem que ao final do processo perceberam melhoria na qualidade de vida. Os dados qualitativos desvelaram sentidos e significados do cuidar e do ser cuidado, bem como o emergir de conflitos existentes que, no decorrer do processo musicoterapêutico, foram trabalhados. Conclui-se que a Musicoterapia, por meio das experiências musicais vivenciadas no decorrer do processo, principalmente a composição musical, promoveu a autoexpressão, a melhora da autoimagem e maior acesso ao autoconhecimento, contribuindo para o desenvolvimento da resiliência e de estratégias de enfrentamento ao estresse, além dos demais aspectos mencionados.

O envelhecimento populacional é um processo universal, que não afeta apenas o indivíduo, mas também a família e a sociedade. No Brasil, o número de idosos está crescendo, o que torna necessário discutir sobre o exercício do cuidado destinado ao sujeito idoso, sobretudo o hospitalizado, bem como as perspectivas que este possui a respeito de si mesmo, dos familiares e dos profissionais cuidadores. O objetivo geral desta pesquisa qualitativa consistiu, assim, em conhecer e compreender a percepção do sujeito idoso hospitalizado a respeito de si mesmo e dos cuidadores familiares e profissionais. Foram sujeitos da pesquisa 19 idosos hospitalizados, com 60 anos ou mais, capazes de responder às questões aplicadas oralmente, a partir de um roteiro prévio, após várias observações, no período de 2007 e 2008, numa instituição hospitalar privada do RS. Tais respostas foram analisadas com base nas seguintes noções: conceitos e preconceitos relativos ao sujeito idoso; o autocuidado e o cuidado prestado por familiares e profissionais; perda de autonomia e institucionalização: a relação do idoso com o profissional cuidador; profissionais cuidadores da área da saúde; o profissional cuidador e a profissional cuidadora: a desigualdade entre os gêneros; qualidade de vida e saúde dos profissionais "cuida(dores)"; o surgimento dos hospitais; a ética, o SUS e as políticas públicas de saúde do idoso. Por meio da análise dos conteúdos, chegou-se a quatro categorias, definidas pelas respostas e não pelas questões: 1) "o idoso fala sobre si e sua doença"; 2) "a percepção do idoso com relação ao cuidador: os âmbitos familiar e profissional"; 3) "percepção do idoso em relação à instituição hospitalar"; 4) "percepção do idoso com relação aos seus direitos e deveres". A partir das respostas analisadas, concluiu-se que muitos sujeitos idosos não tinham clareza sobre a "sua" patologia; verificou-se a esperança em relação à vida e à cura de sua doença geralmente associada à religiosidade e à fé; esteve presente, ainda, a preocupação de se constituir um paciente permanente, com dependência irreversível dos medicamentos ou dos "cuida(dores)", perdendo, assim, a sua autonomia como sujeito. Em relação à instituição, embora tenha se constatado um atendimento ético e parcimonioso, nem sempre isso foi evidenciado pelos sujeitos idosos. O idoso com patologias graves referiu sentir-se mais seguro no hospital por ter ali o apoio técnico indispensável, preferindo, nessa ocasião, o cuidador profissional. Apesar da intenção explícita nas políticas públicas em considerar o idoso como sujeito em uma nova fase de vida, com necessidades e cuidados específicos, verificou-se que os direitos dos idosos ainda são desconhecidos pela sociedade e por eles próprios. A geriatria, a gerontologia e os novos conceitos delas decorrentes não alcançaram, ainda, todos os profissionais cuidadores de idosos, e menos ainda os seus familiares. Daí a urgência de um processo educativo e educador em torno do novo paradigma que busca, entre outras coisas, "pagar uma dívida" para com os idosos e resgatar o sujeito que a modernidade relegou a um lugar periférico e de invisibilidade. / The population ageing is a universal process that does not affect only the individual, but also the family and the community. In Brazil, the number of senior citizens is increasing and because of that it is necessary to discuss about the care of the elderly, especially the hospitalized one, as well as to reflect about their perspectives concerning themselves, the family and the professional caregivers. The goal of this qualitative research was to identify and to comprehend the perception of the hospitalized senior citizen concerning themselves, their family and the professional caregiver. The research subjects were 19 hospitalized senior citizens - 60 years old or more - who were able to answer the oral interviews, which were performed, based on a previous script and after several observations, in the period of 2007 and 2008, in a private hospital in the state of Rio Grande do Sul. The criteria used to subdivide the analysis in four categories were defined by the answers and not by the questions. Here they are: Talking about the senior citizens: some concepts and prejudices; The auto-care and the care rendered by family and professionals; Loss of autonomy and institutionalization: the relationship between the elder and the caregiver; Professional caregiver in the health area; From the female caregiver to the male one: the inequality between the genders; Life quality and the caregiver’s health; The hospitals beginning; Ethics and public health policies for the elderly. By the analysis of the contents, four categories were identified: first - "the elder speaks about himself and his disease"; second - "the perception of the elder regarding the caregiver: the familiar and professional scope"; third - "the perception of the elder regarding the hospital institution"; fourth - "the perception of the elder regarding their rights and duties." Based on the analysis realized, it was possible to conclude that many senior citizens did not have clearness about their pathology; the hope regarding life and the cure of the disease was almost associated to the religiosity and faith; the preoccupation of being a permanent patient, with irreversible dependence of medicines or caregivers, losing, thus, their autonomy. Considering the institution, although it was verified an ethical and parsimonious assistance, it was not always evidenced by the senior citizens. The ones with serious pathologies affirm to feel safer in hospital because of its indispensable technical support, desiring, so, the professional caregiver. Besides the explicit intention in the public policies of considering the senior citizen someone in a new phase of life, with specific needs and cares, it was not always verified, making it possible to believe that the rights of the elderly are still unknown by society and also themselves. The geriatrics and gerontology specialties and their new concepts have not reached, yet, all the senior caregivers or families. From that situation, there is the urgency of an educational process around the new paradigm that aims, among other things, to "pay a debt" to the senior citizen, rescuing the individual that modernity has relegated to a peripheral and invisible place.