在老人人口數增加、失能老人人口數俱增、及婦女勞動參與率上昇的人口趨勢下，女性花費在照顧老人的時間將逐漸超過照顧子女的時間；在此同時，就業也將占據婦女生命中的絕大部份，未來將有許多中年婦女必須同時擔負就業與老人照顧的責任。為深入瞭解這群婦女的獨特感受，本研究的目的包括：(1)瞭解職業婦女照顧家中老年親屬的情形及其經驗。(2)探討婦女兼顧「就業與老人照顧」之經驗感受。(3)探索職業婦女為兼顧「就業」和「老人照顧」所採取之因應策略。(4)分析職業婦女歷經不同處境及採取相異因應策略之原因。(5)根據研究結果提出政策上的建議。 本研究採用質化研究的深入訪談法，計訪問12位從事全職工作的女性老人照顧者。研究發現：(1)職業婦女為老年親屬所提供的社會支持包括：日常生活活動的協助、提醒和監督老人執行日常生活活動、生病時的照顧、照顧管理、陪伴及情緒支持等項目。(2)老人照顧對職業婦女之意義：以文化規範及情感因素佔關鍵性的地位。(3)就業對職業婦女的意義：包括物質報酬、心理報酬、及生活寄託。(4)婦女兼顧「老人照顧」與「就業」責任時面臨錯綜複雜的感受。(5)職業婦女處理「老人照顧」與「就業」衝突之因應策略：可分為「調整照顧責任」、及「調整就業行為」兩類。(6)職業婦女的角色衝突及所採取之五種因應策略。 根據上述結論，本研究針對政策意識型態、企業界及政府提出建議。 目　錄 第一章 研究動機與目的 1 第二章 文獻探討 5 第一節 就業者照顧老年親屬的情形 5 第二節 婦女兼顧「老人照顧」和「就業」之經驗感受 10 第三節 職業婦女兼顧「老人照顧」和「就業」所採取的工作調整行為 13 第四節 從角色理論來看職業婦女兼顧「老人照顧」和「就業」的處境 15 第五節 從交換理論分析職業婦女採取不同工作調整行為之因素 19 第三章 研究設計 22 第一節 研究方法 22 第二節 資料蒐集與分析 23 第三節 研究對象與研究者的角色 24 第四節 樣本的相關資料 26 第四章 分析結果 32 第一節 職業婦女所提供的社會支持 32 第二節 老人照顧對職業婦女的意義 38 第三節 就業對職業婦女的意義 47 第四節 婦女兼顧「老人照顧」與「就業」責任之經驗感受 54 第五節 職業婦女處理「老人照顧」與「就業」衝突之因應策略 75 第六節 職業婦女的角色衝突及所採取之因應策略 94 第五章 結論與建議 107 第一節 結論 107 第二節 相關議題的探討 110 第三節 建議 115 第四節 研究限制及對未來研究之建議 119 參考書目 121 附錄一 訪談導引 129 附錄二 受訪者資料 132 附錄三 受照顧老人資料 133 表 目 錄 表3-1 樣本基本資料 28 表3-2 老人日常生活活動（ADLs）能力失能情形 29 表3-3 老人工具性日常生活活動（IADLs）能力失能情形 30 表3-4 照顧者提供老人照顧工作的協助項目 31 表3-5 老人的失能情形和照顧者提供的協助項目數 31 表4-1 受訪者的「老人照顧」及「就業」角色 97 圖 目 錄 表4-1 Kopelman et al.的工作--家庭衝突模型 94 表4-2 Higgins et al.的工作--家庭衝突模型 94 / The results of a qualitative study on the lives of 12 women who work full-time and care for the elderly are presented. Respondents provide assistance for the elderly, and they have to remind the elderly to carry out the activities of daily living. Also, women play as a carer, care manager, and emotion supporter. The meaning for women to wok is the material reward, the psychological reward, and life goals. When women care for the elderly and work in the meantime, complex feeling will come to their mind. They have to adjust their work or care responsibility when they feel conflict between work and elder care. Policy and practice implications are also discussed.

Antalet personer med demenssjukdomar ökar i takt med att befolkningen blir allt äldre och en stor del av vården av personer med demenssjukdom utförs av anhöriga. För att kunna stödja anhörigvårdare är det viktigt att sjuksköterskor har kunskap om hur anhöriga upplever sin situation. Syftet med studien var att beskriva anhörigas upplevelse av att vårda personer med demenssjukdom. För att besvara syftet har en litteraturstudie genomförts där 12 kvalitativa artiklar analyserats. Ur analysen framkom sju teman: Upplevelse av stress, svårigheter och otillräcklighet, Upplevelse av sorg och förlust, Upplevelse av förändrade relationer och roller, Upplevelse av förpliktelse, Upplevelse av välbefinnande, Upplevelse av stöd, samt Upplevelse av att bemästra och skapa mening i sin situation. Resultatet i denna studie kan bidra till en ökad förståelse för hur anhörigvårdare upplever sin situation, något som erfordras för att sjukvården skall kunna erbjuda anhöriga som vårdar personer med demenssjukdom ett adekvat stöd. / The number of people with dementia is increasing whilst the population gets older.  A great part of the care is provided by relatives. In order to support family caregivers’ nurses are required to obtain knowledge about how relatives perceive their situation. The purpose of this study was to describe the experience of relatives providing care for persons with dementia. To answer the purpose a literature study was made where 12 qualitative articles were analyzed.  Findings illustrates seven themes: The experience of stress, difficulties and inadequacy, The experience of grief and loss, The experience of changing relationships and roles, The experience of obligation, The experience of wellbeing, The experience of support, and finally The experience of coping and making sense of the situation. The result of this study could contribute to an increased understanding of how family caregiver’s experience their situation. This is required in order to offer relatives who provide care for a person with dementia an adequate support.

Alzheimers sjukdom påverkar både patienten och den som vårdar honom eller henne. En anhörig vårdar ofta patienten och det har visat sig att de är utsatta för olika svårigheter.  Syftet med denna studie var att beskriva anhörigas upplevelser av att vårda en familjemed­lem med Alzheimers sjukdom. Metoden som användes för att besvara syftet var att göra en litteraturstudie enligt Polit och Becks (2004) beskrivning av genomförandet av en litteratur­studie. Dataanalysen skedde med kvalitativ ansats genom att artiklarna lästes igenom nog­grant och gemensamheter och mönster bland anhörigvårdares upplevelser söktes. Studiens resultat baserades på åtta veten­skapliga artiklar från vilka fem teman framkom. Resultatet visade att många anhörigvår­dare upplevde en förlust av relationer. De saknade relationen både med patienten och med vänner. De tyckte även att det var viktigt att ha fritid och tid för sig själva, vilket ofta var svårt att åstadkomma. Viljan till att söka ny kunskap blev stor när de tog på sig rollen som anhörigvårdare, och många upplevde olika lidanden och besvär såsom skuld och de­pression. Upplevelserna i resultatet åskådliggjorde att en stor del av de anhöriga inte kände välbefinnande. Detta resultat pekar på vikten av att sjuksköterskor är medvetna om de upplevelser och känslor anhörigvårdare har. / Alzheimer’s disease afflicts both the patient and the person caring for him or her. A relative often provides care for the patient and it appears as though they are exposed to different adversities. The aim of this study was to describe the experiences of relatives which care for a family member suffering from Alzheimer’s disease. The method used to answer the aim was to do a literature review by using Polit and Becks (2004) description of how to make a literature review. The data analysis was made with a qualitative approach by reading the articles accurately and patterns among the experiences family caregivers have been sought. The results of the study are based on eight scientific articles. Five themes emerged from these articles. The results show that many family caregivers experienced a loss of relationships. They missed the relationship with the patient as well as the relationship with friends. They also thought that it was important to have leisure, which often is hard to accomplish. The desire to seek for new knowledge became large when they became family caregivers, and many of them experienced different sufferings and troubles such as guilt and depression. The results show that many of the relatives did not experience well-being. On account of this it is important that nurses know about the experiences and feelings family caregivers have.

No description available.

Background: Multivariate analyses of quality of life (QoL) in dementia are relatively rare. This study was the first aiming to measure QoL of persons with dementia and their informal caregivers in New Zealand. To date, it is also the only study examining what interventions from primary and secondary care in New Zealand are helpful for enhancing QoL and what these interventions cost. Methods: In this prospective cohort study, questionnaires (including the Quality of Life-Alzheimer’s Disease Scale and the Neuropsychiatric Inventory) investigating various QoL-domains were administered to 53 outpatients of a memory clinic recently diagnosed with dementia, and their caregivers at baseline and 12-month follow-up. Time and resource utilisation were assessed in order to identify direct and indirect costs using questionnaires and diaries (over 12 months). Results: Cognition scores of persons with dementia (PWDs) ranged from 49 to 91 on the Modified-Mini-Mental State Examination (3MS); scores on the Clinical Dementia Rating Scale (CDR) ranged from 0.5 to 3, with 83% of PWDs being in the early stages of the illness at baseline (CDR ≤ 1). Most PWD measurements confirmed the predicted correlations including a strong link between PWDs’ and caregivers’ QoL. Many correlations remained stable over 12 months. Combined information and support interventions achieved significantly better PWD and caregiver QoL than single interventions. Direct costs (including costs of informal caregiving time) increased with an increase in dementia severity, neuropsychiatric and behavioural symptoms and functional limitations. There was a clear trend that caregivers were more distressed if patients received less in-home support. Direct non-medical costs of PWDs living at home did not increase with the severity of PWDs’ cognitive impairment. In 2008/09, there were an estimated 1,896 persons in Canterbury providing a total of 5.47 million hours of care for PWDs. This unpaid care had a value of NZ $135.8 million. Caregivers were much more likely to be depressed if they had a low income. More than one-third of family-caregivers (39.5%) thought that financial compensation for their time spent caring would enable them to look after the PWD at home for longer. Conclusions: A mix of different clinical and non-clinical (including economic) factors can predict QoL in dementia. The strong link between PWDs’ and caregivers’ QoL calls for a systemic approach in dementia care. QoL can be sustained over 1 year in a cohort of mainly early dementia patients and their informal caregivers. Developing psychosocial and financial incentives could be a key factor to support PWDs and their informal caregivers in New Zealand, consequently enabling them to live in the community for longer. These outcomes also have implications for health professionals and social policy makers which must be addressed as health practitioners and the wider community strive both for best practice and for cost-effective care of our increasingly ageing population.

No description available.

<p>Antalet personer med demenssjukdomar ökar i takt med att befolkningen blir allt äldre och en stor del av vården av personer med demenssjukdom utförs av anhöriga. För att kunna stödja anhörigvårdare är det viktigt att sjuksköterskor har kunskap om hur anhöriga upplever sin situation. Syftet med studien var att beskriva anhörigas upplevelse av att vårda personer med demenssjukdom. För att besvara syftet har en litteraturstudie genomförts där 12 kvalitativa artiklar analyserats. Ur analysen framkom sju teman: Upplevelse av stress, svårigheter och otillräcklighet, Upplevelse av sorg och förlust, Upplevelse av förändrade relationer och roller, Upplevelse av förpliktelse, Upplevelse av välbefinnande, Upplevelse av stöd, samt Upplevelse av att bemästra och skapa mening i sin situation. Resultatet i denna studie kan bidra till en ökad förståelse för hur anhörigvårdare upplever sin situation, något som erfordras för att sjukvården skall kunna erbjuda anhöriga som vårdar personer med demenssjukdom ett adekvat stöd.</p> / <p>The number of people with dementia is increasing whilst the population gets older.  A great part of the care is provided by relatives. In order to support family caregivers’ nurses are required to obtain knowledge about how relatives perceive their situation. The purpose of this study was to describe the experience of relatives providing care for persons with dementia. To answer the purpose a literature study was made where 12 qualitative articles were analyzed.  Findings illustrates seven themes: The experience of stress, difficulties and inadequacy, The experience of grief and loss, The experience of changing relationships and roles, The experience of obligation, The experience of wellbeing, The experience of support, and finally The experience of coping and making sense of the situation. The result of this study could contribute to an increased understanding of how family caregiver’s experience their situation. This is required in order to offer relatives who provide care for a person with dementia an adequate support.</p>

<p>Alzheimers sjukdom påverkar både patienten och den som vårdar honom eller henne. En anhörig vårdar ofta patienten och det har visat sig att de är utsatta för olika svårigheter.  Syftet med denna studie var att beskriva anhörigas upplevelser av att vårda en familjemed­lem med Alzheimers sjukdom. Metoden som användes för att besvara syftet var att göra en litteraturstudie enligt Polit och Becks (2004) beskrivning av genomförandet av en litteratur­studie. Dataanalysen skedde med kvalitativ ansats genom att artiklarna lästes igenom nog­grant och gemensamheter och mönster bland anhörigvårdares upplevelser söktes. Studiens resultat baserades på åtta veten­skapliga artiklar från vilka fem teman framkom. Resultatet visade att många anhörigvår­dare upplevde en förlust av relationer. De saknade relationen både med patienten och med vänner. De tyckte även att det var viktigt att ha fritid och tid för sig själva, vilket ofta var svårt att åstadkomma. Viljan till att söka ny kunskap blev stor när de tog på sig rollen som anhörigvårdare, och många upplevde olika lidanden och besvär såsom skuld och de­pression. Upplevelserna i resultatet åskådliggjorde att en stor del av de anhöriga inte kände välbefinnande. Detta resultat pekar på vikten av att sjuksköterskor är medvetna om de upplevelser och känslor anhörigvårdare har.</p> / <p>Alzheimer’s disease afflicts both the patient and the person caring for him or her. A relative often provides care for the patient and it appears as though they are exposed to different adversities. The aim of this study was to describe the experiences of relatives which care for a family member suffering from Alzheimer’s disease. The method used to answer the aim was to do a literature review by using Polit and Becks (2004) description of how to make a literature review. The data analysis was made with a qualitative approach by reading the articles accurately and patterns among the experiences family caregivers have been sought. The results of the study are based on eight scientific articles. Five themes emerged from these articles. The results show that many family caregivers experienced a loss of relationships. They missed the relationship with the patient as well as the relationship with friends. They also thought that it was important to have leisure, which often is hard to accomplish. The desire to seek for new knowledge became large when they became family caregivers, and many of them experienced different sufferings and troubles such as guilt and depression. The results show that many of the relatives did not experience well-being. On account of this it is important that nurses know about the experiences and feelings family caregivers have.</p>

O envelhecimento populacional e o aumento das doenças crônicas não transmissíveis geram uma demanda crescente por Programas de Cuidados Domiciliares em Atenção Primaria à Saúde, de capacitação de familiares cuidadores e de profissionais da saúde para lidar com a doença avançada e a terminalidade. Esta pesquisa subscreve essa realidade e objetiva compreender a visão de quem cuida de um familiar com doença avançada e os possíveis aprendizados dos cuidadores durante esse processo de cuidar de quem está morrendo. Trata-se de uma pesquisa qualitativa, de caráter etnográfico, realizada na vila Fátima-Bom Jesus, comunidade de baixa renda e baixo nível educacional. Comunidade que enfrenta cotidianamente dificuldades socioeconômicas e culturais, convivendo constantemente com o narcotráfico e a intensa violência urbana. Este estudo entrevistou 11 cuidadores familiares com mais de 18 anos, que cuidam/cuidaram de pacientes com doença avançada nos últimos 12 meses; coletou dados dos prontuários dos pacientes do Programa de Cuidados Domiciliares do Centro de Extensão Universitária Vila Fátima, da Pontifícia Universidade Católica do Rio Grande do Sul – CEUVF-PUCRS, e do diário de campo do trabalho com o Grupo de Cuidadores. A análise comportou três alicerces: o cuidador familiar, o paciente com doença avançada e a morte. A convivência diária dos cuidadores com seus familiares em fase final de vida aproximou-os de sua própria consciência em relação à morte; essa consciência pessoal da maioria não facilitou um diálogo com o paciente sobre a morte; os cuidadores, em sua maioria mulheres, idade avançada, baixa renda e nível educacional, evidenciam alto risco para o desenvolvimento de estresse. Manifestam com intensidade a sensação de dever cumprido pelo ato de cuidar; cuidar como atitude de preocupação, de responsabilização, de envolvimento emocional e afetivo. Cuidado que possibilitou a muitos pacientes viverem mais tempo com qualidade de vida no domicílio. A opção da maioria dos cuidadores foi cuidar do familiar até a morte no domicílio, devido à solidão do paciente no hospital. A opção por morrer no hospital acontece devido à solidão do cuidador na assistência domiciliar. Os cuidadores apresentam uma trajetória de cuidados ao longo de seu ciclo de vida: na infância cuidaram de crianças, seguiram cuidando de familiares, amigos e vizinhos. Os laços afetivos existentes foram essenciais para o estabelecimento de uma relação afetuosa de cuidado. Alguns cuidadores apresentaram dificuldades em assumir seu papel, cumprir tarefas, evidenciando traços de negligência e a necessidade de intervenção da equipe. Os cuidadores demonstram aprendizados ligados aos cuidados do corpo, administração de medicações; aprendizados vinculados aos cuidados psicossociais e espirituais, empatia, compreensão, silêncio, limites, carinho. O universo do cuidar mostra-se como um mundo construído com o outro, onde não existe realidade como verdade e sim versões da realidade, uma construção de reflexão e aprendizado na interface das biografias pessoais e do meio sociocultural onde a vida ocorre. / The population's aging and the increase in non-transmissible chronic diseases have created a growing demand for Basic Home Healthcare Programs and training for family caregivers and health professionals to deal with advanced-stage diseases and terminality. This paper is aimed at understanding how people caring for a family member suffering from an advanced-stage disease see the situation and what caregivers could potentially learn during this process of taking care of someone who is dying. It is a qualitative, ethnographic study carried out in Vila Fátima-Bom Jesus, a low-income, lowschooling community. The community grapples with socioeconomic and cultural hardships on a daily basis as they are constantly surrounded by drug trafficking and intense urban violence. This study interviewed 11 family caregivers over the age of 18 who are taking/have taken care of patients suffering from advanced-stage diseases in the past 12 months. We gathered data from medical records of patients overseen by the Home Care Program run by the Vila Fátima University Extension Center of Pontifícia Universidade Católica do Rio Grande do Sul (CEUVF-PUCRS) and the field log of the work with the Caregivers' Group. Our analysis was grounded on three pillars: family caregivers, advanced-disease patients, and death. The caregivers' daily interactions with their family members nearing the end of their lives have made the former more aware of their own mortality. Such personal awareness by the majority of them has not made it easier for them to talk about death with their patients. The caregivers, most of them senior, low-income, low-schooling females, show high risk towards developing stress. They speak pointedly about their sense of accomplishment for having provided the care. Care-giving as an attitude of concern, accountability, emotional and affective involvement. Care-giving which has allowed many patients to live a longer, higher quality life at home. Most caregivers have chosen to take care of their family members until their demise at home, because of how lonely patients are in hospitals. Patients have chosen to die in the hospital because of how lonesome home caregivers become. Caregivers have had a history of caregiving throughout their lives. As children, they used to take care of other kids. Later on, they proceeded to take care of family members, friends, and neighbors. The existing emotional bonds were essential to set up a loving care-giving relationship. Some caregivers have had trouble taking on their roles and doing chores. Additionally, some betrayed signs of being neglectful and the team was required to step in. Caregivers show to have learned about taking care of the body and administering medication. They have learned about psycho-social and spiritual care, empathy, understanding, silence, limits, affection. The universe of care has proved to be a world built along with another person, where reality does not exist as truth but as versions of reality. A construction of reflection and learning in the interface of personal biographies and the socio-cultural environment where life takes place.

Introdução: Frente à dependência funcional de idosos após um acidente vascular cerebral (AVC), os cuidadores familiares enfrentam a falta de conhecimento e de habilidades para realizarem os cuidados necessários no domicílio, o que tende a influenciar sua sobrecarga. Objetivos: Comparar o efeito de intervenção educativa no domicílio na sobrecarga de cuidadores familiares de idosos após AVC, com orientações usuais de cuidado no período de um mês. Métodos: Ensaio clínico randomizado (ECR), denominado Nursing Home Care Intervention Post Stroke (SHARE). O grupo intervenção (GI) recebeu o acompanhamento sistemático de enfermeiras por meio de três visitas domiciliares (VDs) no período de um mês, para preparo dos cuidadores na realização das atividades de vida diária (AVD) do idoso, suporte emocional e orientações para utilização dos serviços de saúde. O grupo controle (GC) contou com as orientações usuais de cuidado dos serviços de saúde. O desfecho primário foi a sobrecarga do cuidador, e os desfechos secundários foram a capacidade funcional e as reinternações hospitalares dos idosos, avaliados em sete dias e 60 dias após a alta. As análises foram realizadas por intenção de tratar e foi utilizado o programa SPSS 21.0. Para análise do efeito da intervenção nos desfechos foram utilizados os testes t-student pareado, com intervalo de confiança de 95% e t independente. Para verificação do efeito de interação foi realizada análise de variância (ANOVA) para medidas repetidas. / Introduction: Faced with the functional dependence of the elderly after a stroke, family caregivers face the lack of knowledge and skills to perform the necessary health care at home, which tends to negatively influence their overload. Objectives: Compare the effect of home educational intervention (SHARE), on the overload of family caregivers of the elderly with stroke when compared to usual care in one month. Methods: Randomized clinical trial denominated Nursing Home Care Intervention Post Stroke (SHARE). The intervention group (GI) receive a systematic follow-up of nurses through three home visits (VDs) during one month, to prepare the family caregivers in performing daily life activities of the elderly, emotional support and orientations for the use of health services. The control group (CG) did not receive the VDs and had the usual care of the health services. The primary outcome was a caregiver burden, and the secondary outcomes were functional capacity and hospital readmissions of the elderly, evaluete at 7 days and 60 days after discharge. The analyzes were performed by intention to treat and the SPSS 21.0 program was used. For the analysis of the effect of the intervention on the results we used the t-student paired tests, with 95% confidence interval and independent t. For analysis of the interaction effect, analysis of variance (ANOVA) was performed for repeated measures. A significant value was considered p <0.05. For the control of confounding factors, multivariate analyzes were used. The study was approved by the Research Committee of the Hospital de Clínicas of Porto Alegre (nº 160181). Results: From May 2016 to September 2017, 48 elderly and their family caregivers were randomized, 24 for the intervention group (GI) and 24 for the CG. Among the elderly, 54.1% were female, and 95.8% had ischemic stroke. Of the caregivers, 87.5% were women, mean of 53.3 ± 12.9 years. There was no statistically significant difference between the groups regarding burden (0.43 GI vs 0.78 GC, p = 0.717), functional capacity (16 GI vs 18.7 GC, p = 0.999) and hospital readmissions (17% GI vs. 8.3% GC, p = 0.854). Conclusion: The SHARE intervention seems to have not influenced in the outcomes. Other intervention compositions are suggested and evaluation of other outcomes. Clinical Trial Registration: NCT02807012.