Os familiares são importantes cuidadores de pessoas com transtorno bipolar, podendo estar vulneráveis à sobrecarga, alterações na qualidade de vida e à utilização de psicofármacos. Os objetivos neste estudo foram verificar a prevalência do consumo de psicofármacos e fatores associados em familiares cuidadores de pessoas com transtorno bipolar e compreender o significado que eles atribuem para o próprio consumo do psicofármaco. Trata-se de estudo misto, realizado em duas etapas e em três serviços de um município paulista. A etapa quantitativa foi transversal analítica, para avaliar fatores associados ao consumo de psicofármacos entre familiares cuidadores. Participaram dessa etapa 100 familiares cuidadores, mediante aplicação da Escala de Avaliação da Sobrecarga Familiar; Escala de Avaliação da Qualidade de Vida e questionários para verificar o consumo de psicofármacos e dados demográficos e socioeconômicos. Para análise da associação entre variáveis demográficas e socioeconômicas e o consumo de psicofármacos foram utilizados os testes qui-quadrado e teste exato de Fisher. Para comparação dos escores médios das escalas de qualidade de vida e de sobrecarga familiar foram utilizados o teste U de Mann-Whitney, para as subescalas e domínios sem distribuição normal, e t de Student, para aqueles com distribuição normal. Foi realizado modelo de regressão logística para identificar os preditores de uso de psicofármacos. O consumo de psicofármacos foi de 32%, com predomínio de prescrições feitas por psiquiatras (41%), de antidepressivos (65,6%) e ansiolíticos (59,4%), e diferença estatisticamente significante em relação ao consumo quando comparado às variáveis sexo (p=0,031) e ocupação (p=0,006). A sobrecarga não apresentou associações estatisticamente significantes, enquanto a qualidade de vida foi melhor entre familiares cuidadores que não consumiam psicofármacos. As variáveis domínio social (OR=0,9530; IC 95% 0,9270-0,9760) da escala de qualidade de vida e unidade HC (OR=0,2674; IC 95% 0,0764-0,8141) contribuíram para o modelo de regressão. Na etapa qualitativa do estudo enfocou-se o significado que o familiar cuidador atribui ao próprio consumo de psicofármaco, utilizando-se o Interacionismo Simbólico como referencial teórico e a Teoria Fundamentada nos Dados como referencial metodológico. Os dados qualitativos foram obtidos por meio de entrevistas abertas gravadas com 32 familiares cuidadores e foram analisados em três etapas: codificação aberta, axial e seletiva. Os familiares cuidadores aprendem a conviver com a pessoa com transtorno bipolar e buscam o psicofármaco como forma de autocuidado para assumir a tarefa de ser cuidador. As crenças, medos e percepções relacionadas ao consumo, somadas à falta de informações e à presença de efeitos colaterais levam o familiar cuidador a repensar a importância do consumo. Contudo, a utilização do psicofármaco não é interrompida para a maioria em razão dos benefícios percebidos e da possibilidade de seguir a vida com mais equilíbrio e qualidade de vida. Os resultados desta pesquisa oferecem maior compreensão do fenômeno estudado e subsídios para a melhoria da assistência para essa clientela / Family members are important caregivers of people with Bipolar Disorder (BD) and may be vulnerable to overload, changes in quality of life and use of psychotropic drugs. This study aimed to verify the prevalence of consumption of psychotropic drugs and associated factors in family caregivers of people with BD and to understand the meaning they attribute to the consumption of psychotropic drugs. This mixed study was carried out in two stages and in three services of a city of São Paulo state. The quantitative stage used the analytical cross sectional method to evaluate factors associated to the consumption of psychotropic drugs by family caregivers. The total of 100 family caregivers participated in this stage and the Family Overload Evaluation Scale (FBIS-BR); the quality of life evaluation scale - WHOQOL-Bref; and questionnaires to verify the consumption of psychotropic drugs and demographic and socioeconomic data were used to collect data. The Chi-square test and Fisher\'s exact test were used to analyze the association between demographic and socioeconomic variables and consumption of psychotropic drugs. The Mann-Whitney U test for the subscales and domains with non-normal distribution and Student\'s t test for those with normal distribution were used to compare the mean scores of the quality of life and family overload scales. A logistic regression model was developed to identify the predictors of use of psychotropic drugs. Consumption of psychotropic drugs was of 32%, with predominance of prescriptions provided by psychiatrists (41%), antidepressants (65.6%) and anxiolytics (59.4%), and a statistically significant difference when consumption was compared with the sex variables (p=0.031) and occupation (p=0.006). The overload did not present statistically significant associations, whereas the quality of life was better among family caregivers who did not consume psychotropic drugs. The social domain variables (OR=0.9530; IC 95% 0.9270-0.9760) of the quality of life scale and HC unit (OR=0.2674, IC 95% 0.0764-0.8141) contributed for the regression model. The qualitative stage of the study focused on the meaning that the familiar caregiver attributes to the own consumption of psychotropic drug and used Symbolic Interactionism as theoretical reference and the Grounded Theory as a methodological reference. Qualitative data were obtained through recorded open interviews with 32 family caregivers and were analyzed in three steps: open, axial and selective coding. Family caregivers learn to live with the person with BD and take psychotropic drugs as a form of self-care related to the task of being a caregiver. Beliefs, fears and perceptions regarding the consumption coupled with lack of information and the presence of side effects, lead the family caregiver to rethink the importance of consumption. However, the use of psychotropic drugs is not interrupted for the majority due to perceived benefits and the possibility to continue life with balance and quality of life. The results showed a better understanding of the studied phenomenon and subsidies for the improvement of care for this clientele

Made available in DSpace on 2016-07-27T13:46:30Z (GMT). No. of bitstreams: 1 ERIKA PEREIRA MACHADO.pdf: 990501 bytes, checksum: 550397d7499ea75eca571f0a03ff27a2 (MD5) Previous issue date: 2014-02-06 / As pessoas buscam em sua essência a espiritualidade e/ou sagrado como forma para entender o significado da vida e da morte, de sua presença no mundo, melhorar sua saúde, e também pode ser uma ferramenta para lidar com as adversidades e os estados traumáticos, agressores e estressores que a vida propõe. Numa doença crônica e incapacitante surge na vida do doente a figura da pessoa cuidadora, na sua maioria é um familiar, cuja entrega à prestação de cuidados ao outro é diária, ininterrupta e em algumas situações pode ser cansativa e dolorosa ao cuidador. A rotina de quem cuida é uma tarefa estressante e angustiante, pois ao cuidador estão expostos eventos que o podem conduzir ao estresse, ansiedade e depressão, ou seja, essas são algumas das respostas de um organismo fragilizado por fatores agressores diários e que requer uma atenção e disposição imediata. Nesta situação a pessoa cuidadora precisa ser assistida e receber um cuidado integral com intuito de prevenir ou minimizar um adoecimento. Nesta pesquisa se propôs discutir a espiritualidade na vida cotidiana de cuidadores de doentes, com enfoque em três textos bíblicos referenciando a práxis terapêutica do taumaturgo, Jesus, cuidador e curador da integridade e totalidade das pessoas doentes e cuidadoras. O estudo fenomenológico-hermenêutico foi dividido em três capítulos. No primeiro é apresentada uma fundamentação teórica da doença crônica e a realidade que envolve o cuidador familiar. No segundo é abordado o discurso de três narrativas bíblicas de cura, apresentadas nos textos de Marcos 10,46-52, Mateus 9,1-8 e Lucas 13,10-17, num olhar para a pessoa cuidadora como um ser que necessita de cuidados e atenção. No terceiro elucida elementos e reflexões para uma prática de cuidado integral e especial para com a pessoa cuidadora frente à tarefa de cuidado. Na conclusão é apresentada a espiritualidade no modo de construir e vivenciar o sofrimento que se instaura na vida de quem adoece. Mediante as perdas, renúncias e decepções, o cuidador é uma pessoa que adoece em silêncio e a espiritualidade é uma das formas de promover qualidade de vida e ressignificação ao que adoece, agindo positivamente sobre a saúde mental, produzindo esperança, acolhimento, amparo e sentido a vida.

Introdução. Cuidar de uma pessoa com doença crônica pode afetar significativamente o bem-estar de quem cuida, assim como perturbar ou deteriorar sua saúde física e emocional, sua dinâmica familiar e social e seus recursos econômicos. Infelizmente na América Latina, o sistema de saúde não responde às demandas e necessidades dos cuidadores familiares. Dispor de evidências oriundas de pesquisas rigorosamente delineadas e conduzidas com cuidadores com o diagnóstico de Tensão do Papel Cuidador contribui para o desenvolvimento de intervenções para melhorar o bem estar e qualidade de vida dessa população. Objetivos. Desenvolver um programa de intervenção de enfermagem que promova a adaptação dos cuidadores familiares com tensão do papel de cuidador; determinar a efetividade de um programa de intervenção aplicado por telefone para promover a adaptação de cuidadores familiares colombianos e brasileiros com Tensão do Papel de Cuidador. Método. Para o primeiro objetivo proposto foi seguida a proposta do UK Medical Research Council para o desenvolvimento e avaliação de intervenções complexas. O programa de intervenção foi desenvolvido em três passos. No primeiro foi estabelecida a evidência existente sobre intervenções para cuidadores familiares. No segundo passo foi desenvolvida a concepção teórica do cuidador familiar visto como individuo adaptável e do programa de intervenção como estímulo contextual sob a perspectiva do modelo de Adaptação de Roy. No terceiro passo, foi modelada a primeira versão do programa de intervenção e refinada em um estudo piloto. Para atingir o segundo objetivo, foi realizado um ensaio clínico randomizado em que 208 cuidadores familiares (104 colombianos e 104 brasileiros) foram randomizados para cinco sessões de intervenção psicoeducativa aplicadas com uso de telefone (Grupo intervenção) ou o cuidado usual (Grupo controle). Na coleta de dados foram aplicados os instrumentos de caracterização do cuidador, do receptor de cuidados e do cuidado oferecido pelo cuidador, a escala de apoio social (MOS), a Escala de Tensão do Papel de Cuidador, a Escala de Bem-estar do Cuidador Familiar e a escala de avaliação da qualidade de vida WHOQol-Bref. Os participantes foram avaliados na linha de base e na 6ª e 9ª semanas de seguimento. As variáveis de desfecho foram analisadas por equações de estimação generalizada (EEG) considerando interação entre tempo e grupo. Resultados. Os dois grupos estudados apresentaram diminuição estatisticamente significante da tensão do papel ao longo do tempo (Fator tempo, p <0.01). Não houve diferenças significativas nos dois grupos ao nível das variáveis bem estar do cuidador familiar e qualidade de vida. Conclusão. O programa de intervenção aplicado com uso de telefone não foi efetivo para promover a adaptação de cuidadores familiares com tensão do papel de cuidador. Apesar dos achados deste estudo, a teoria da adaptação do cuidador familiar derivada do modelo conceptual proposto por Roy foi consistente para compreender o impacto do cuidado no cuidador familiar, além de proporcionar uma estrutura para testar a efetividade do programa. / Introduction. Caring for a person with chronic disease can significantly affect the well-being of carers, as well as disrupt or deteriorate their physical and emotional health, their family, social dynamics, and their economic resources. In Latin America, the health system does not respond to the demands and needs of familiar caregivers. Having evidence from research rigorously delineated and conducted to inform the care of caregivers with the diagnosis of caregiver role strain will contribute to the development of programs capable of meeting the needs and demands of this population. Objectives. To develop a nursing intervention program that promotes the adaptation of family caregivers with caregiver role strain; to determine the effectiveness of nursing interventions applied by telephone to promote adaptation of Colombian and Brazilian family caregivers with caregiver role strain. Method. For the first objective, the UK Medical Research Council guidelines for the development and evaluation of complex interventions were applied. The intervention program was developed in three main steps. In the first one we identified previously published data regarding interventions for family caregivers; in the second step we developed a theoretical understanding of caregiver seen an adaptive individual, and the intervention program was conceived as a contextual stimulus from the perspective of the Roy Adaptation Model. In the third step, a preliminary intervention program was modeled based on literature findings, and then it was refined in a pilot study. To achieve the second objective, a clinical trial with 208 family caregivers (104 Colombians and 104 Brazilians) randomized to five psychoeducational intervention sessions applied using telephone (intervention group) or usual care (control group) was conducted. During data collection, an instrument for caregiver, care receiver and care characteristics, the Social Support scale (MOS), the Caregiver Role Strain scale, the Caregiver Wellbeing scale, and the The World Health Organization Quality of Life (WHOQOL) scale were applied. The participants were assessed at baseline and at the 6th and 9th week of follow-up. The outcome variables were analyzed by generalized estimating equations (GEE) considering interaction between time and group. Results. The two groups had statistically significant decrease of the caregiver role strain over time (Time factor, p <0.01). There were no significant differences between groups for wellbeing of caregivers, neither for quality of life. Conclusion. The intervention program applied using telephone was not effective to promote adaptation of family caregivers with caregiver role strain. Despite the findings, the theory of adaptation of caregivers derived from the conceptual model proposed by Roy was consistent to understand the impact of care on family caregivers, as well as provided a framework to test the effectiveness of the program.

This study is sponsored by Minor Field Study (MFS) scholarships from the University of Borås, funded by the Swedish International Development Cooperation Agency (SIDA). Thailand is a densely populated developing country situated in Asia. The relatives are the most important social network in Thailand. People all over the world, including Thai people are in need of aftercare when they have left the hospital. In Thailand this care mostly executed by relatives.There is not much research done that shows the patient‟s perspective of home care in Thailand so it is important to do this study. The aim of the study is to illuminate the Thai patients‟ perspective of being cared in their own home. The qualitative interviews were made with six patients at a hospital in Bangkok. The authors had one in beforehand-prepared question, but had to put in some stimulating questions in all of the interviews. To describe and analyze the result the authors did qualitative content analysis. The criteria to take part in this study were that the interviewees were Thai, over 25 years old and had experiences of being cared in their own home, by relatives or by professionals.The result is presented with meanings units, codes, sub-categories, categories and content areas. The content areas are; the patient does not experience any problems with home care and the patient experience problems with home care. The categories are good experiences and naturally and hard experiences. The authors then made sub-categories and named them; safety, family as caregiver is expected, solidarity, grateful, sense of guilt, insecure and hard to be dependent.The authors found out that all the interviewees experienced home care as something naturally, when it is a part of life to be cared by your relatives in Thailand. This expression fits in under the first content area, but some of the interviewees also expressed feelings that fit in under the opposite content area. In the end of the study the authors discusses different choices that they have done, and the consequences that followed with them, in a discussion of the method. Even the use of an interpreter is discussed in this part. In the discussion of the result the authors discusses the most interesting parts of the result and verify this with references from scientific articles. One thing that the authors found out was that home care in Thailand can be expressed with both positive and negative experiences from the same person. / Program: Sjuksköterskeutbildning

A sample of 22 persons who care for relatives exhibiting initial symptoms of senile dementia were administered paper-and- pencil questionnaires to determine their level of subjective burden and psychological symptomatology. Each participant's attributional style was measured on an internal-external dimension, and their causal attributions regarding their relative's symptomatic behaviors were assessed. Results indicated that attributional style did not predict specific attributions about illness-related behaviors, but the tendency to not blame an afflicted relative for their behavior was predictive of subjective burden and symptoms of depression and anxiety. Subjective burden was found to predict feelings of hostility in caregivers.

Background: Dementia is often called the illness of relatives because the whole family is affected and they are forced to take on new roles and adapt to a new life situation. More than half of people with dementia live in ordinary living, many with a relative.  Objective: The purpose of this study is to elucidate relatives' experiences of caring for a relative with dementia in the home. Method: The study was conducted with a qualitative approach with semi-structured interviews. Eight relatives attended, of which one man and seven women who cared for a relative with dementia in the home participated. The material was analyzed based on a qualitative content analysis. Outcome: Relatives saw it as a matter of course to take care of their relatives after being affected by dementia. The interviewees described feelings of loyalty, duty, and love and that their relationship was still characterized by closeness and concern for each other. At the same time, the lives of the relatives who were now facing new difficulties and challenges changed. The study's results eventuated in two main categories: relating to a new life situation and support and strategies, with five subcategories: changing roles, loss of one's life partner, deteriorating health and quality of life, support from the surroundings and own resources. Conclusion: The experience of caring for a close relative with dementia had both positive and negative aspects. They were cared for in love and loyalty. At the same time, many relatives experienced a loss and a feeling of being alone even though the loved one remained alive. In order to cope with their everyday lives, different support and strategies were important. / Bakgrund: Demenssjukdomen kallas ofta för de anhörigas sjukdom. Hela familjen drabbas och tvingas ofta inta nya roller och anpassa sig till en ny livssituation. Mer än en halv miljon personer med demens lever i ordinärt boende, många gånger med en närstående. Syfte: Syftet med studien är att belysa anhörigas upplevelser av att vårda en närstående med demenssjukdom i hemmet. Metod: Studien genomfördes med en kvalitativ ansats med semistrukturerade intervjuer. Åtta anhöriga deltog i studien, varav en man och sju kvinnor som alla vårdade en anhörig med demenssjukdom i hemmet. Materialet analyserades med hjälp av kvalitativ innehållsanalys. Resultat: De anhöriga såg det som en självklarhet att ta hand om sina närstående efter att de drabbats av demenssjukdom. Informanterna beskrev känslor av lojalitet, plikt och kärlek och deras relation präglades fortfarande av närhet och omtanke till varandra. Samtidigt förändrades livet och man stod inför nya svårigheter och utmaningar. Resultatet mynnade ut i två huvudkategorier; Att förhålla sig till en ny livssituation och Stöd och strategier samt fem underkategorier vilka var; Förändrade roller, Förlust av sin livskamrat, Försämrad hälsa och livskvalitet, Stöd från omgivningen och Egna resurser. Slutsats: Upplevelsen av att vårda en närstående med demens hade både positiva och negativa aspekter. Man vårdade av kärlek och lojalitet. Samtidigt upplevde många anhöriga en förlust och en känsla av att vara ensam trots att den närstående fanns kvar i livet. För att klara vardagen framkom olika stöd och strategier som var viktiga.

Bakgrund: Antalet personer som vårdas palliativt i hemmet har ökat det senaste decennierna. Den palliativa vården innebär en helhetsvård av den sjuke i livets slutskede. Den skall samtidigt vara ett stöd för de närstående som har en betydelsefull roll för den sjuke. Syfte: Syftet med denna studie är att belysa upplevelser av att vårda en närstående med cancer sjukdom. Metod: En innehållsanalys genomfördes i denna litteraturstudie enligt Friberg (2006). Artikelsökningarna gjordes via Cinahl och PubMed. I resultatet användes sammanlagt elva kvalitativa vetenskapliga studier som granskats. Sex utav studierna var från Sverige och övriga var från Australien, Italien, Kanada, Hong Kong och Nederländerna. Resultat: Resultatet utmynnade i tre huvudkategorier, närståendes upplevelser av en ny roll, närståendes upplevelser i samband med vårdandet och närståendes upplevelser av vårdteamet. Varje kategori består av underkategorier. Närståendes upplevelser av en ny roll som beskriver om förändringar och utmanade situationer där närstående genomgick en rollförändring från att vara närstående till att  vara vårdare. De ställde höga krav på sig själva när det gällde omvårdnadsansvaret av den sjuke. Likaså trodde de att människorna i deras omgivning hade samma krav på dem. Upplevelser av att vårda en närstående i hemmiljö visade att det var både den sjukes och närståendes önskan om att den sjuke skulle vårdas hemma. Närstående begränsade sina aktiviteter för att vårda den sjuke vilket hade inverkan på deras liv. Detta kunde leda till att närstående drabbades av fysiska och psykiska belastningar på grund av de påfrestningarna de upplevde när den sjuke blev sämre eller de påfrestningarna som förekom i relation till de professionella vårdarna. Närståendes upplevelser av vården tar upp att närstående upplevde att de ville vara mer delaktiga i omvårdnaden av den sjuke och behöver information samt bättre kommunikation från de professionella vårdarna. Diskussion: Övergångsprocessen som närstående går igenom när de vårdar den sjuke i livets slutskede kunde ses som en utmaning för de. Trots att det kunde påverka deras liv negativt eftersom närstående ville ge den sjuke en god omvårdnad men upplevde att de inte alltid lyckades med detta. För att underlätta närståendes övergångsprocess är det viktigt att sjuksköterskan får dem att känna sig delaktiga i omvårdnaden genom att etablera en bra relation med närstående och ge dem kontinuerlig individuell anpassad information.

本研究試圖探究走過家庭照顧歷程決定成為照顧服務員這群女性勞動者，從這群女性勞動者的生命圖象中，分析這兩種角色之差異性，並進一步探討研究對象對於這兩種角色轉換之轉換歷程與因應策略。 本研究使用質性取向的研究方法，以半結構式的深度訪談進行資料蒐集，有效受訪對象共訪談8位曾有家庭照顧經驗之照顧服務員，年齡介於44歲～63歲之間，教育程度則以高中職為主。婚姻狀況單身3名、單親2名、已婚育有子女3名。照顧關係中女兒照顧者與媳婦照顧者各半。家庭照顧期間從1年到16年皆有，照顧服務員工作年資則從2年到13年不等。 本研究首先歸納整理女性成為主要照顧者的原因，並整理當照顧情境改變時家庭照顧者重返勞動市場之考量因素。研究發現，家庭照顧者在成為照顧服務員的過程當中，受服務經驗扮演相當重要的中介角色，受服務經驗是這群中年婦女在求職過程的一個重要催化劑，轉而投入照顧服務工作。接著耙梳照顧服務員在職場的工作困境，研究發現照顧服務員所面臨到的工作困境相當多元，本研究分從個人面、互動面、實務面及制度面四個層面加以說明。 研究最後統整了兩種照顧經驗之比較，研究發現家庭照顧者成為照顧服務員之後，因照顧對象的不同，隸屬於不同的關係中，佔據不同的位置，扮演不同的角色，並依循此角色之責任義務規範行事。兩種照顧經驗的差異展現在照顧角色轉換的經驗感受、照顧基礎的差異以及照顧過程中照顧者的自主性三個面向上。同樣的照顧工作，一是無酬一是有酬，一是親屬關係一是專業服務關係，一是基於責任一是基於契約提供照顧，一是在家庭成員共識認可下照顧，一是依循科層組織規章在契約的規範下照顧，兩者在不同的面向上呈現相當不同的景象。然而，具有家庭照顧經驗的照顧服務員，對日後的照顧工作是有影響的，其關連性主要包括在下列三個部分：照顧的知識技巧、同理以及情感轉移上。其照顧與互動的技巧是可以透過反覆的實作而熟能生巧，照顧技巧的經驗累積可以視為是一種延續。 私領域的家庭照顧者與公領域的照顧服務員間之兩種照顧經驗，在照顧的任務（care for）上其實大致相同，但在照顧者對他人個感受（care about）上卻大相逕庭。因為照顧關係與照顧基礎的不同，親屬關係的家庭照顧承載著較多的感受狀態，家庭照顧者需時時刻刻、盡己所能地回應失能者所有需求，關注受照顧者的福祉，也因此照顧者會感受到較大的照顧壓力。反觀照顧服務員的照顧本質，對於情感的指涉相對較低，關係建立僅是互動的基礎，互動的時間也多在服務的時數範圍內，對受照顧者而言，更多的關注是在照顧任務是否精確完善的被執行。因此，一樣照顧兩樣情，相似的照顧工作，在不同的照顧場域中，照顧技巧的經驗會延續，但照顧歷程的差異感受卻是呈現相當多元的樣貌。 / This research aims to investigate female laborers who decide to become care workers owing to the experience of being family caregivers. It analyzes the difference between the two roles as well as the transformation and strategies that are taken. With the qualitative approach, the data were collected by semi-structural in-depth interviews.There are 8 valid once-family-caregiver interviewees who are now care workers aged 44 to 66, with the educational background of senior or vocational high schools. Among these interviewees, three are single, 2 are single mothers and 3 are married and have children. Four of whose family roles are daughters, four daughters- in- law. They have 1-16 years of experience of being family caregivers respectively and 2-13 years of being care workers. The study starts with a generalization of reasons that makes females as main caregivers and factors of their returning to the labor market when care-taking conditions change. It discovers that the experience of having been taken care of plays a crucial role in the transformation—from family caregivers to domestic ones. The experience serves as an important catalyst for these middle-aged women to become care workers. The study, then, scrutinizes the predicament these care workers encounter, followed by an analysis of their mutiple predicament derived from four respectives: personal conditions, interactive relationship with their patients, care-taking practice and public system. The study wraps up with a comparison-- after becoming care workers, these once-family-caregivers make adjustments according to different relationship and roles. The diversity between the two experience presents upon three dimensions: relationship with patients, different care-taking basis and autonomy of patients. Although both family caregivers and domestic ones are responsible for taking care of patients, the formers are unpaid; doing the job out of familial affection and obligations with the consensus of other family members, while the latters are paid workers, looking after their patients on the basis of profession and contracts under relevant regulations. Each unfolds quite disparate views in front of us. As divergent as they are, the experience of family care-taking has impact on the domestic caregiving work in terms of relevant knowledge and skills, compassion and communication abilities. The accumulation of similar experience can be extended and easily applied. The mission of 'caring for' patients is generally identical for both private-domain family cargivers and public-domain care workers, nevertheless, the extent of “caring about” patients varies. Family caregivers carry more affection and emotions; they have to do their best all all times to respond every need and well-being of the disables, which generates much stress. Care workers, however, are less affection-expected; their relationship with the patients is contract-based and they serve their patients in work hours. Instead of emotionally dependent, patients focus more on whether and how the tasks are being done. Two different perspectives are revealed which give us more lights on the care-taking work.

Sleep disturbance is common in patients with heart failure (HF) and the family caregivers. Sleep disturbance is known as a predictor of poor quality of life (QoL) in individual level. The manner in which patients’ and caregivers’ sleep disturbances influence each other’s QoL has not been determined. The purpose of this dissertation was to investigate the associations of sleep disturbance and outcomes in patients with HF and their primary family caregivers. The specific aims were to: 1) examine whether sleep disturbance of patients and their family caregivers predict their own and their partners’ QoL; 2) examine the mediator effects of depressive symptoms on the association between sleep disturbance and QoL in patients and family caregivers; and 3) provide evidence of the psychometric priorities of the Zarit Burden Interview (ZBI) as a measure of caregiving burden in caregivers of patients with HF. The three specific aims were addressed using secondary analyses of cross-sectional data available from 143 patients with HF and their primary family caregivers. To accomplish Specific Aim One, multilevel dyadic analysis, actor-partner interdependence model was used for 78 patient- caregiver dyads. Individuals’ sleep disturbance predicted their own poor QoL. Caregivers’ sleep disturbance predicted patients’ mental aspect of QoL. For Specific Aim Two, a series of multiple regressions was used to examine the mediation effect in patients and caregivers separately. Depressive symptoms significantly mediated the relationship between sleep disturbance and mental aspect of QoL in patients. The mediation effect was similar in caregivers. For Specific Aim Three, the internal consistency and convergent and construct validity of the ZBI in 124 family caregivers of patients with HF were examined. The results showed that the ZBI is a reliable and valid measure of caregiving burden in this population. This dissertation has fulfilled important gaps in the evidence base for the QoL outcome in patients with HF and caregivers. The findings from this dissertation provided evidence of the importance of monitoring sleep disturbance for better QoL in both patients and caregivers and the importance of assessing caregivers’ sleep disturbance for improving patients’ QoL. It also provided evidence of the importance of managing depressive symptoms when targeting sleep disturbance to improve QoL in both patients and caregivers.

Despite work-life balance being an area of interest to many researchers, there is little reference to any effects related specifically to elder care. Current demographics indicate that the proportion of elderly in the community is increasing, and with greater workforce participation (particularly among women workers) the availability of family caregivers is less guaranteed. Women are more likely to be responsible for elder care, and as they seek to manage their work and life, are also more likely to seek workplace flexibility, sometimes through self-employment. The effect that elder care may be having on the work-life balance of self-employed women is the focus of this research project. Using work-family border theory as a lens, this research documented the effect that elder care had on the lives of a group of self-employed women who also had elder care responsibilities. Eight women from the Wellington region participated in this research, which was carried out from a broadly phenomenological perspective. Each participant shared information, using a case study approach, about their business and elder care responsibilities. The results of this research indicate the profound effect of emotions in the elder care situation, and also the effect of expectations from others whose influences affected the ability of the participants to achieve work-life balance.