Thesis (MA)-- Stellenbosch University, 2014. / ENGLISH ABSTRACT: Family caregivers play a large role in the lives of traumatic brain injury (TBI) survivors. This study explored the experiences of family members who care for TBI survivors in the Western Cape. Emphasis was placed on the challenges and resources that were associated with the caregiving role. A qualitative exploratory research design was implemented, whereby thematic analysis was utilised to examine the semi-structured interviews that were conducted with 12 female family caregivers of TBI survivors. Several challenges emerged, namely trauma, consequences of a TBI, responsibilities, lack of support, unawareness, financial burden, emotional challenges and coping. Several resources were also identified, namely the road to recovery, social support, financial resource and coping. These findings suggest that although caregivers who care for a family member who sustained a TBI face several challenges through the caregiving task, these individuals have a number of resources that help them to cope. Interventions that focus on psycho-education have been identified as an important need amongst the participants of this study. In addition, the need for support groups were highlighted as an important way in which many of the challenges that these caregivers experience could be addressed. Caregivers also expressed a need for more active involvement of health care professionals with regard to the provision of guidance, empathy and information. It seems as if the caregivers view the relationship between themselves and the health care professionals involved in the treatment of their family member who sustained a TBI as very important. It was however evident from the findings of this study that the caregivers are generally not satisfied with the quality of the interaction between the health care professionals and themselves. This study’s findings serve as a basis for future research studies on the experiences of family caregivers of TBI survivors in the Western Cape. / AFRIKAANSE OPSOMMING: Gesinsversorgers speel ’n groot rol in die lewens van oorlewendes van traumatiese breinbeserings (TBB). Hierdie studie het die ervaringe van gesinsversorgers van TBB-oorlewendes in die Wes-Kaap verken. Die fokus is op die uitdagings en hulpbronne wat geassosieer word met die versorgingsrol. ’n Kwalitatiewe ontwerp is geïmplementeer, waarby tematiese analise gebruik is om die semigestruktureerde onderhoude van 12 vroulike gesinsversorgers van TBB-oorlewendes te bestudeer. Verskeie uitdagings het na vore gekom, naamlik trauma, gevolge van TBB, verantwoordelikhede, gebrek aan ondersteuning, onbewustheid, finansiële las, emosionele uitdagings en hantering. Die hulpbronne wat geïdentifiseer is, het die pad na herstel, sosiale ondersteuning, finansiële hulpbron en hantering ingesluit. Intervensies wat fokus op psigo-opvoeding is geïndentifiseer as ’n belangrike behoefte onder die deelnemers aan die studie. Hierbenewens is ook ’n behoefte aan ondersteuningsgroepe uitgelig as ’n belangrike wyse om die vele uitdagings wat hierdie versorgers ervaar aan te pak. Die versorgers het ook ’n behoefte ervaar aan meer aktiewe betrokkenheid van gesondheidskundiges ten opsigte van die voorsiening van leiding, empatie en inligting. Dit blyk dat versorgers die verhouding tussen hulself en die gesondheidskundiges betrokke by hul gesinslid met die TBB as belangrik beskou. Desnietemin blyk dit duidelik uit die bevindinge van hierdie studie dat versorgers oor die algemeen nie tevrede is met die kwaliteit van die interaksie tussen die gesondheidskundiges en hulself nie. Die bevindinge van hierdie studie dien as basis vir toekomstige navorsing oor die ervaringe van gesinsversorgers van TBB-oorlewendes in the Wes-Kaap.

Le but de cette étude est de cerner, à partir de leur propre point de vue, la trajectoire d’adaptation de conjoints dont l’épouse est atteinte d’un cancer de l’ovaire. Une approche qualitative, la théorisation ancrée, a été utilisée dans le cadre de cette recherche. Les données ont été recueillies à l’aide d'entretiens semi-structurés effectués auprès de neuf conjoints qui accompagnaient leur épouse lors de leurs traitements dans une unité montréalaise ultra-spécialisée de soins pour les cancers gynécologiques. Nos résultats font ressortir qu’une fois passé le choc de l’annonce du diagnostic, nos répondants se ressaisissent et élaborent toute une série de stratégies de protection pour leur épouse et eux-mêmes, puis d’attaque de la maladie. Au bilan, pour eux, le cancer se révèle une expérience « transformante» aux plans personnel, conjugal et social. Les contrastes observés entre nos résultats et ceux des études antérieures, qui insistent sur le désarroi de conjoints, peuvent être expliqués par la prise en charge efficace de la femme par le réseau de la santé, qui valorise le rôle du conjoint et qui l’outille pour accompagner son épouse. S’ajoutent à cela la force du lien conjugal, trempé par les épreuves passées, certains traits de personnalité des conjoints et l'action du réseau de soutien personnel. En regard de la pratique infirmière, notre recherche met en évidence le bien-fondé des politiques soutenant l’intégration des familles dans les plans de soins et les retombées positives d’une approche concertée entre tous les intervenants de la santé. Répéter une telle étude dans d'autres institutions du réseau de la santé permettrait de cerner encore plus finement son impact sur l’adaptation de conjoints à la maladie. / This research focuses on how nine men recall their adaptation trajectory to their spouses’ ovarian cancer. The qualitative analysis made use of the grounded theory approach; semistructured interviews were conducted with husbands accompanying their spouses during their treatments in an ultra-specialized unit for gynaecological cancers in a Montreal hospital. Our results show that after the initial shock initiated by the announcement, the respondents develop a set of strategies, first to protect their wives and themselves, and then to attack the illness. Accompanying their wives through the experience of cancer proves to be, for the husbands, a transformative experience at all levels: personal,conjugal, and social. The perceived efficacy of the health network and its preoccupation with the husband’s caretaker role may explain the sharp contrast we observe between results from the literature, insisting on the husbands’ helplessness in such a context, and our data, which underline their fighting spirit. Other factors identified are the strength of the conjugal link, forged in common ordeals, personality traits of both husbands and wives, and support from their personal network. Concerning nursing practice, this research suggests that the importance and the support given by the health professionals to the family caregivers is of utmost importance for the couple’s quality of life throughout this experience. Besides, the coordination of the health professionals, throughout the women’s illness, is crucial in diminishing the anxiety linked to the cancer diagnosis. The duplication of such a study in other cancer care units would allow a finer analysis of the impact the health network can have on the adaptation of both spouses to illness.

In this thesis, I shall discuss the importance of supporting caregivers. I will focus primarily on the introduction and description of problematic phenomena related to caring, to the caregiver's role, then of delivering care and its species. In subsequent chapters I will focus on the pitfalls of care and the implications for caring. Next, I will dedicate the positive aspects of care. At work I will also support informal care from the state. I provide overview of options that can help them in caring for a related. At thesis I try to highlight the care provided by amateurish carers about the importance of their support and also to outline the positive aspects of care. Family carers deserve admiration. Their strength and conviction in many cases is unimaginable. Caregivers must overcome many obstacles and still manage most of the care.

Made available in DSpace on 2016-07-27T14:20:53Z (GMT). No. of bitstreams: 1 Mariana Costa Brasil.pdf: 1110930 bytes, checksum: e7725a875e7e23db24cc62784943d3dc (MD5) Previous issue date: 2016-02-05 / This dissertation aims to understand how the process of resilience happens in family caregivers of leukemia patients, whether it s acute or chronic, lymphatic or myeloid. It s presented in two articles: the first article is a systematic review of literature and the second one is empirical research. The aim of this revision was to present a global view of the national and international study about resilience in family caregivers of chronic diseases, from articles published and filed between 2005 and 2015. It was reached 34 studies to make this article. It concludes that researches about family caregivers has grown around the world, with the increase of anual publications. However, the fact that the concept is not unanimous to the researchers makes it dificult to have just one way of thinking about the theme. It was also perceived that latin publishment, specially in Brazil is still very much underdeveloped. When talking about empirical research, it s wise to recall that it s related to a quality study about series cases, with variations of quantities, descriptive and exploratory. It took part in the research 14 family caregivers followed by their leukemia patients, ten women and four men, with ages between 20 and 69 years old. Futhermore, as considered resilience as a process, it was possible to realize the way each family caregivers live the experience. Although, some factors were detected as regular to them when talking about promoters or inhibitors inside the process, the most relevant were the social support and life quality. It was detailed as the major difficulties faced by the families caregivers when they assumed the function. Therefore, to study the phenomenon which shows the human s potential, as in the resilience, has been more necessary. This happens because to understand how people can face extremely stressful situations, get over them and grow up in front them, makes the health professionals pay close attention to these phenomenon, making it possible to create programs and favorables projects in this field of overcoming and human development. / Esta dissertação buscou compreender como se dá o processo de resiliência de cuidadores familiares de pacientes com leucemia, seja ela aguda ou crônica, linfoide ou mieloide. Ela está organizada em dois artigos, sendo o primeiro uma revisão sistemática da literatura e o segundo uma pesquisa empírica. O objetivo da revisão foi apresentar um panorama da produção nacional e internacional acerca do estudo sobre resiliência em cuidadores familiares de doenças crônicas, a partir de artigos publicados e indexados entre os anos de 2005 e 2015. Chegou-se a 34 estudos para a construção deste artigo. Concluiuse que as pesquisas sobre resiliência em cuidadores familiares têm se expandido no mundo, com crescimento nas publicações anualmente. No entanto, o fato do conceito não ser unânime aos pesquisadores, torna difícil levantar uma única linha de pesquisa sobre o tema. Notou-se também que a publicação latina, sobretudo no Brasil ainda é muito incipiente. Em relação à pesquisa empírica vale ressaltar que trata-se de um estudo qualitativo série-de-casos, com variáveis quantitativas, descritivo e exploratório. Participaram 14 cuidadores familiares acompanhantes de pacientes portadores de leucemia, sendo dez mulheres e quatro homens, com idades entre 20 e 69 anos. Ao se considerar a resiliência como processo, foi possível perceber que ela é vivenciada de forma singular por cada cuidador familiar participante. Porém, alguns fatores foram levantados como comuns a eles quando se tratou de promotores ou inibidores deste processo, sendo os mais aparentes a rede de suporte social e a qualidade de vida. Foram descritas as principais dificuldades pelas quais os cuidadores familiares passam ao assumirem este papel. Assim estudar fenômenos que mostrem a potencialidade humana, como é o caso da resiliência tem sido cada vez mais necessário. Isto porque, ao compreender como as pessoas conseguem enfrentar, superar e crescer diante de situações extremamente estressoras, faz com que os profissionais de saúde possam se atentar para estes fenômenos, possibilitando a criação de programas e projetos favoráveis a esse universo de superação e de desenvolvimento humano.

Made available in DSpace on 2016-08-10T10:57:44Z (GMT). No. of bitstreams: 1 JAMILE CARVALHO RODRIGUES.pdf: 1659739 bytes, checksum: 6a9382adf9be1a71eeb09da77519cef8 (MD5) Previous issue date: 2015-08-11 / The transition from hospital to home care after a cerebrovascular accident (CVA) is recognized as a complex period that has been neglected and for which health interventions should be planned to promote continuity of care, adaptation and preparation to face the demands of care, especially for family caregivers of people with complete dependence. The objective of this qualitative case study research was to understand the lived experience of family caregivers of people who survived a CVA, in the process of transition from hospital discharge to home care. Twelve family caregivers participated, residents in a municipality in western Bahia, Brazil. Data were collected using semi-structured interviews conducted in their homes, and the interpretative thematic analysis was conducted using the process of step reduction, data organization, identification of units of meaning, construction of thematic nuclei, and interpretation of results. The thematic nuclei identified were, the discharge process: feelings and preparation of caregivers; and, home care: changes in family life, the annulment of the life of the caregiver and coping through love, social support and faith. The participants perceived the hospital discharge process as a decisive moment, with contradictory feelings regarding the need for home care, such as fear, worry and insecurity of not being able to provide care and happiness, and overcoming the opportunity to return home with the family after hospitalization. Weaknesses in support for preparation of hospital discharge related to communication deficits of health professionals and lack of welcoming in the hospital discharge process were mentioned. The changes in family life, overload and caring with love were reported; social support and faith as tools for dealing with the difficult process, aloneness and suffering of home care. This experience represented for these people, the need to assume the care of someone who was totally dependent for activities of daily living, beyond the physical, psychological and social limitations in life and in social roles and family relationships. The need for care models that have people as their central focus, the continuity of care, the shared decision-making about the necessary and possible therapies was evident, considering the socioeconomic context of each family nucleus, so that the care transition process is experienced in a safe and effective manner, promoting rehabilitation, and the social and community reintegration of these people. / A transição do cuidado hospitalar para o domiciliar após o acidente vascular cerebral (AVC) é reconhecida como um período complexo que tem sido negligenciado e para o qual deverão ser planejadas intervenções em saúde que favoreçam a continuidade dos cuidados, a adaptação e o preparo para o enfrentamento frente às demandas, em especial para os cuidadores familiares de pessoas com dependência completa. O objetivo desta pesquisa qualitativa, do tipo estudo de caso, foi compreender a experiência vivenciada por cuidadores familiares de pessoas que sobreviveram ao AVC no processo de transição da alta hospitalar para o cuidado domiciliar. Participaram doze cuidadores residentes em um município do oeste do Estado da Bahia, Brasil. Os dados foram coletados por meio de entrevista semiestruturada nos domicílios e a análise temática interpretativa foi conduzida por meio das etapas de redução, organização dos dados, identificação das unidades de significado, construção dos núcleos temáticos e interpretação dos resultados. Identificaram-se os seguintes núcleos temáticos: o processo de alta hospitalar, em que se destacam os sentimentos e o preparo dos cuidadores, e o cuidado domiciliar, marcado por mudanças na vida da família e do cuidador. Os participantes perceberam o processo de alta como um momento decisivo e com sentimentos como medo, preocupação e insegurança, mas também de felicidade e superação, pela oportunidade de retornarem ao domicílio com o familiar. Eles apontaram fragilidades assistenciais para o preparo da alta hospitalar relacionadas aos deficits de comunicação dos profissionais de saúde e à falta de acolhimento. Mencionaram as mudanças na vida e nas relações da família, a sobrecarga física e psicológica, o amor em cuidar e também a importância do apoio social e da fé como instrumentos para o enfrentamento desse processo difícil e solitário, que é a experiência-necessidade de assumir o cuidado de alguém que ficou totalmente dependente para as atividades da vida diária. Ficou evidente a necessidade de modelos de cuidado que tenham como foco central as pessoas, a continuidade dos cuidados e a tomada de decisão compartilhada sobre as terapêuticas necessárias e possíveis, considerando o contexto socioeconômico de cada núcleo familiar para que o processo de transição do cuidado seja vivenciado de modo seguro e eficaz e promova a reabilitação e a reinserção social e comunitária.

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Made available in DSpace on 2014-07-29T15:25:22Z (GMT). No. of bitstreams: 1 tese doutorado - Prudente COM.pdf: 1326905 bytes, checksum: 6e4291c24908e39406b7e44110628295 (MD5) Previous issue date: 2009-06-17 / This thesis follows the scientific article model. The first article, Quality of life of primary caregivers of children with Cerebral Palsy: integrative review of the literature was submitted to the Revista Eletrônica de Enfermagem . In this article, which used the descriptors Quality of Life , Mothers , Parents , Caregivers and Cerebral Palsy , a integrative review of the literature was undertaken which included scientific articles published between 1997 and 2008. Of the 28 articles found, 5 formed part of this sample, which despite their considerable methodological limitations, made it clear that certain aspects of the quality of life of caregivers of children with Cerebral Palsy are lower than those of caregivers of healthy children. In some of these studies, the possibility of a correlation between the level of the children s motor disability and the quality of life of the caregivers was investigated. However, the authors did not agree on this correlation, which showed the need for further investigation. So to answer this need, a second article, entitled The quality of life of mothers of children with Cerebral Palsy: the impact of motor disability , was forwarded to the periodical Disability & Rehabilitation . This was a crosssectional study, which set out to correlate the quality of life of 146 mothers of children with Cerebral Palsy with that of 30 mothers of children with normal development, all evaluated by the Medical Outcome Study 36-item Short-Form Health Survey (SF-36). In addition, the Gross Motor Function Classification System (GMFCS) was used to characterize the motor disability of the children with Cerebral Palsy. This study proved that the quality of life of mothers of children with Cerebral Palsy is lower than that of mothers with children with normal development in terms of Functioning Capacity and Vitality domains, but the children s motor disability did not influence it. A third article, entitled Relationship between the quality of life of mothers of children with Cerebral Palsy and the children s motor functioning, after ten months of rehabilitation was submitted to the periodical Revista Latino-Americana de Enfermagem . In this article, 100 mothers of children with Cerebral Palsy were studied, in an effort to assess the quality of life of these mothers after their children s rehabilitation, over a period of ten months. The abovementioned tools were also used and the Gross Motor Function Measure (GMFM). However, this was a longitudinal study which sought to correlate the quality of life of the mothers with the development of their children s gross motor function. The results show that after ten months of rehabilitation, the gross motor function of the children with Cerebral Palsy had improved significantly, while the mothers of these children showed an improvement in life quality in the pain domain; in addition, the improvement in the children s motor function did not influence the changes which occurred in the mothers quality of life, including the pain domain. On considering the complexity of quality of life and the clinical condition which Cerebral Palsy represents, one is led to believe that other factors could have a greater influence than motor functioning disability, since this factor alone does not interfere with the quality of life of the mothers. / Tese construída no modelo de artigos científicos. No primeiro, submetido à Revista Eletrônica de Enfermagem , intitulado Qualidade de vida de cuidadores primários de crianças com Paralisia Cerebral: revisão integrativa da literatura , utilizando os descritores Qualidade de Vida , Mães , Pais , Cuidadores e Paralisia Cerebral , foi realizada uma revisão integrativa da literatura, incluindo artigos científicos publicados no período de 1997 a 2008. Dos 28 artigos encontrados, 5 fizeram parte da amostra, sendo que muitos deles tiveram fortes limitações metodológicas, ficando evidente, contudo, que alguns aspectos da qualidade de vida dos cuidadores de crianças com Paralisia Cerebral são menores do que o dos cuidadores de crianças saudáveis. Em alguns destes trabalhos foi investigada uma possível correlação entre o nível de comprometimento motor das crianças e a qualidade de vida dos cuidadores, porém, não houve concordância entre os autores, evidenciando a necessidade de novas investigações. Neste sentido, em um segundo artigo, encaminhado ao periódico Disability & Rehabilitation , com o título Quality of life of mothers of children with Cerebral Palsy: impact of motor disability , um estudo do tipo transversal, procurou-se correlacionar a qualidade de vida de 146 mães de crianças com Paralisia Cerebral, comparando-as com 30 mães de crianças com desenvolvimento normal, ambas avaliadas pelo Medical Outcome Study 36-item Short-Form Health Survey (SF-36); além disso, para caracterizar o comprometimento motor das crianças com Paralisia Cerebral utilizou-se o Sistema de Classificação da Função Motora Grossa (GMFCS). Neste estudo ficou comprovado que a qualidade de vida das mães de crianças com Paralisia Cerebral é menor do que a das mães de crianças com desenvolvimento normal quanto aos domínios Capacidade Funcional e Vitalidade, mas o comprometimento motor das crianças não teve influência. No terceiro artigo, submetido ao periódico Revista Latino-Americana de Enfermagem , com o título Relação entre a qualidade de vida de mães de crianças com Paralisia Cerebral e a função motora dos filhos após dez meses de reabilitação , foram estudadas 100 mães de crianças com Paralisia Cerebral, procurando-se avaliar a qualidade de vida destas mães após dez meses de reabilitação de seus filhos, utilizando-se os mesmos instrumentos já referidos e a Medição da Função Motora Grossa (GMFM). Trata-se, portanto, de um estudo longitudinal, no qual se procurou correlacionar a qualidade de vida das mães com a evolução da função motora grossa das crianças. Os resultados demostraram que ao final de dez meses de reabilitação, as crianças com Paralisia Cerebral tiveram significativa melhora da função motora grossa, enquanto as mães destas crianças tiveram uma melhora na qualidade de vida no domínio dor; ademais, a melhora da função motora das crianças não influenciou nas mudanças ocorridas na qualidade de vida das mães, inclusive no domínio dor. Considerando a complexidade de qualidade de vida e da condição clínica representada pela Paralisia Cerebral, tudo leva a crer que outros fatores poderão ter maior influência do que o comprometimento da função motora, pois este fator, por si só, não interfere na qualidade de vida das mães.

Atualmente no Brasil, crescem em importância os estudos sobre cuidados domiciliários à saúde de pessoas com perdas funcionais e dependência e seus cuidadores, em razão das transições demográfica e epidemiológica do país. Na Atenção Básica, com a implementação do Programa Saúde da Família (PSF), o cadastramento das famílias feito pelos agentes comunitários de saúde tornou visíveis as necessidades de saúde desses pacientes, antes confinados a seus lares, e de seus cuidadores. Este estudo teve como objetivo avaliar a qualidade de vida de cuidadores familiares de pacientes com perdas funcionais e dependência, atendidos por equipes de saúde da família, relacionando-a a características sociodemográficas, condições de saúde, grau de sobrecarga percebida e o grau de independência funcional do paciente. Foram entrevistados 66 cuidadores familiares atendidos por equipes de PSF na região sul do município de São Paulo. Os instrumentos utilizados foram: 1) caracterização do cuidador familiar e do paciente; 2) WHOQOL-bref, para avaliação de qualidade de vida subjetiva; 3) Zarit Burden Interview (ZBI), para avaliação da sobrecarga do cuidador, e 4) Escala de Medida de Independência Funcional (MIF), para avaliação da capacidade funcional dos pacientes. Os cuidadores eram, em sua maioria, mulheres (83,3%), casadas (62,2%) com média de idade de 50,5 anos. Na condição de filhas ou filhos (37,9%) e esposas ou esposos (24,2%), cuidavam de pacientes com até 50% de dependência para atividades básicas da vida diária (MIF total = 57,82) e estavam moderadamente sobrecarregados (Zarit total = 32,12). Apresentaram melhor escore de qualidade de vida no domínio físico (66,72) e pior no domínio meio ambiente (52,51). A escala de sobrecarga, a presença de companheiro e a presença de doença no cuidador mostraram-se estatisticamente relacionadas à ´qualidade e vida geral´, no modelo de regressão múltipla final. Os resultados permitiram concluir que a qualidade de vida do cuidador correlacionou-se estatisticamente à sobrecarga percebida, indicando que quanto menores os escores em todos os domínios do WHOQOL-bref, maior a sobrecarga. Não houve associação estatística significativa entre o grau de independência funcional e a qualidade de vida do cuidador. Políticas públicas efetivas, destinadas a oferecer uma rede de serviços de suporte às famílias de pessoas com perdas funcionais e dependência, são primordiais para a diminuição da sobrecarga do cuidador e conseqüente melhora da sua qualidade de vida e de seus familiares / In Brazil, the study of home health care of people with disabilities and dependency and their caregivers is growing in importance due to demographic and epidemiological changes in the country. With the introduction of the Family Health Program, the registration of families in Primary Care by community health agents brought to light the health needs of these patients, who were previously confined to their homes and to their caregivers. The objective of this study was to evaluate the quality of life of family caregivers of patients with disabilities and dependency, served by family healthcare teams, in terms of socio-demographic characteristics, health conditions, level of perceived burden and degree of functional independence of the patient. Family Health Care Program teams interviewed 66 family caregivers in the southern region of the city of São Paulo. The tools employed were: 1) characterization of the family caregiver and patient; 2) WHOQOL-bref, for the subjective evaluation of quality of life; 3) Zarit Burden Interview (ZBI), to evaluate caregiver burden, and 4) Functional Independence Measure Scale (FIM), to evaluate the functional capacity of patients. The caregivers were mostly women (83.3%), married (62.2%) with an average age of 50.5 years. Caregivers were daughters (37.9%) and spouses (24.2%), who cared for patients with up to 50% dependence for instrumental activities of daily living (MIF total = 57.82) and were moderately burdened (Zarit total = 32.12). The physical domain received the best quality of life score (66.72) and the worst score went to the environment domain (52.51). The amount of burden, presence of companion and presence of caregiver illness were statistically associated with general quality of life in the final multiple regression model. The results showed that caregiver quality of life is statistically correlated with perceived burden, indicating that the lower the score in all WHOQOL-bref domains, the higher the burden. No significant statistical association between degree of functional independence and caregiver quality of life was found. Effective public policies designed to offer a network of support services for families of people with dependence and functional loss are essential to reduce the burden placed on caregivers and consequently improve quality of life for them and their families

隨著老年人口的增加，首要面對的議題即為慢性病罹病率的劇增，而其中又以近年來大家所最為關注的失智症為最。由於失智症患者的記憶力、語言與自我照顧能力會隨著病程而逐漸退化，使得照顧者在照顧上的負荷更勝一般失能老人的照顧者。因此，本研究欲從失智老人家庭照顧者的觀點，瞭解其選擇使用居家服務之經驗。 據此，本論文之研究目的在於：一、瞭解失智老人家庭使用居家服務之原因。二、探索失智老人家庭照顧者使用居家服務前後的照顧項目變化，並進而探究居家服務對照顧者及老人之功能。三、從失智老人家庭照顧者的觀點出發，探索何謂好的居家服務，以及其他失智症相關的福利需求。四、依據研究結果，作為服務單位改進措施及政策規劃之參考。 本研究使用質性取向的研究方法，由台北市兩間居家服務協助提供適合本研究之研究對象，採用半結構式的深度訪談法進行資料蒐集，共計訪談十位照顧者。主要的研究結果如下： 一、失智老人家庭照顧者普遍都有生理、心理及社會層面的負荷，這些負荷包括照顧壓力太大、自己的時間受到限制及照顧與工作無法兼顧；而當照顧者面臨到老人因素、照顧者因素及照顧人力因素等三個因素的困難時，就會傾向選擇其他的替代方式來照顧老人。 二、對失智老人家庭照顧者而言，居家服務除可分擔自己的照顧責任、增進社會接觸、補充照顧人力不足之問題以及增加可彈性運用之時間外，更能讓自己對老人狀況有所掌握，並能減緩自己與老人間的緊張關係；而居家服務對失智老人亦有所幫助，尤其是在「增加老人社會接觸」與「增進老人生活自理能力」兩方面。但僅對於輕、中度的失智老人有幫助，對於失智重度以上甚至生活自理能力缺損嚴重的老人而言，幫助則有限。 三、對於失智老人家庭照顧者來說，好的服務員應具備：要有服務熱忱、有愛心、能注重細節，並能感受老人的需求；要有好的服務態度；要有專業素養；及要能讓老人信任等特質；而照顧者眼中好的居家服務單位，則應具備：為求服務員穩定提供服務，對於服務員的休假或請假應有相關規定；應要求服務員要定期回報服務狀況；及應定期安排服務員受訓等條件。 / With the increase of elderly population, the rapid growth of the morbidity of chronic diseases has become the most important issue. In recent years, most people pay attention to the elderly with dementia because their memory, language and self-care capacity will be gradually degraded during the course of the disease. The burden of caregivers taking care of the elderly with dementia is much heavier than the general caregivers of the disabled elderly. Therefore, this study aimed to understand the viewpoints of caregivers taking care of the elderly with dementia about their experiences in choosing to use the home-care services. Accordingly, the purposes of this study are the following: first, understanding the reasons of using home-care services of the family with the elderly with dementia; second, exploring the changes of the caregivers taking care of the elderly with dementia before and after using the home-care services; third, exploring what are good home-care services and other dementia-related welfare needs from the viewpoints of caregivers taking care of the elderly with dementia; forth, providing suggestions for policy making and the improvement of the home-care services providers based on the research findings. This study used the qualitative research approach, and collected data from two home-care services providers and included semi-structured in-depth interviews with ten caregivers of the elderly with dementia. The research findings were listed below: First, the caregivers of the elderly with dementia generally had physical, psychological and social dimensions of burden including pressure, limited time and being not able to take charge of caregiving and work simultaneously. When caregivers faced the difficulties of the above three factors such as the elderly with dementia, caregivers and caregiving manpower, they tended to choose other alternatives to provide caregiving for the elderly. Second, for the caregivers of the elderly with dementia, they could understand the situation of the elderly and reduce their tensions between themselves and the elderly in addition to sharing their duty of caregiving, improving social contact, supplying manpower, and enhancing the time flexibility by providing home-care services. Home-care services also could help the elderly with dementia particularly in the dimensions of “social contact “and “promotion of daily living”. However, it was only for the elderly with mild to moderate degree of dementia; for the elderly with severe dementia and more severe impairment of daily living, the benefit was limited. Third, from the viewpoints of family caregivers of the elderly with dementia, a good home-care worker should have the enthusiasm for providing services, be compassionate and attentive to details, be able to understand the needs of the elderly, have a good attitude, be professional, and be able to be trusted by the elderly. In addition, a good home-care services provider should provide the stable quality of services, have the relevant regulations, require caregivers to report services status regularly and train the home-care workers periodically.

<p>Background: Several patients wish to die at home and relatives often become thecaregivers. This task can be a burden and the opportunity for the patient to die at homecan be overshadowed by obligations and responsibilities. Participation of relatives isoften the prerequisite to offer palliative care in the home environment. The purpose: The purpose of the study was to illuminate relatives’ need of support during palliativecare in the home based care. Methods: A secondary qualitative data analysis wasconducted. Fourteen qualitative and quantitative studies were selected for secondarydata analysis. Results: This study has shown that relatives to palliative patients needemotional and instrumental support, information about the medical care giving and evenfinancial and legal counseling. There was also a need of support after the event of death;a need to be seen and to talk. Conclusion: It is important to listen and involve relativesin care giving. By basing the work on family focused care, the nurse can look at thewhole family, where relatives are important before and after the patient dying. Thisprovides nurses with opportunities to improve well being, quality of life for caregiversby ensuring care and support.</p> / <p>Bakgrund: Allt fler patienter önskar att dö hemma och anhöriga får oftast rollen somvårdare. Uppgiften kan kännas övermäktig och möjligheten för patienten att dö hemmakan överskuggas av krav och förpliktelser. Anhörigas delaktighet kan vara avgörandeför att den palliativa vården ska kunna bedrivas i hemmet. Syfte: Syftet med studien varatt belysa anhörigas behov av stöd inom palliativ vård i hemsjukvården. Metod: Allmänlitteraturstudie som bygger på fjorton kvalitativa och kvantitativa studier där anhörigaserfarenheter, upplevelser och behov granskades. Resultat: Studien visade att anhörigabehövde både emotionellt, instrumentellt stöd, information om den medicinska vårdensamt behov av finansiell- och juridisk rådgivning. Det fanns även ett behov av stöd efterdödsfallet; ett behov av att bli sedd och få prata. Slutsats: För att kunna skapa en braoch trygg vård för patienten och anhöriga är det viktigt att lyssna och delaktiggöraanhöriga i vården. Genom att arbeta utifrån familjefokuserad omvårdnad kandistriktssköterskan se till helheten, där anhöriga är lika viktiga både före och efterpatienten har avlidit. Detta kan ge distriktssköterskan möjlighet till att förbättraanhörigas livskvalitet samt ge vård och stöd.</p>