Made available in DSpace on 2016-04-27T18:47:22Z (GMT). No. of bitstreams: 1 Rosangela Claudia Novembre.pdf: 507256 bytes, checksum: 608e4aa19bda6aaf0bbb3c8b80d78d1e (MD5) Previous issue date: 2006-10-25 / The present research about family caregivers of dependent elderly was based on the overall increase of chronic-degenerative diseases with loss of independence and autonomy. Family caregiving in Brazil has become increasingly important over the years. Although the whole family is generally affected, caregiving is usually carried out by only one family member who undertakes the caregiving activities. As a result, many family caregivers face problems that jeopardize their health due to the overload of work and lack of caregiving skills. The chief objective of this study was to identify the profile of family caregivers of elderly persons admitted to the Mandaqui General Hospital in São Paulo. Research was conducted in two stages. Firstly, we interviewed 107 elderly patients at the hospital, 25 of whom were singled out as needing home care upon discharge. In the second phase, we sought to make contact with those patients family members who would act as caregivers. The research included six female caregivers aged 27-77 years old, with low education, good health conditions, and a restricted social life. The interviews revealed that family caregivers deserve particular attention as they are often unprepared to cope with the illness of an elderly family member for a prolonged period of time. The results of this study provided a social, economic and health profile of family caregivers, which was further presented to the Elderly Care Center of the São Paulo State Health Department / Esta pesquisa sobre o cuidador familiar do idoso dependente, baseou-se no aumento do número de idosos portadores de doenças crônico-degenerativas, com perda da independência e autonomia. Cuidar do doente no domicílio tornou-se cada vez mais freqüente, embora toda família seja afetada, o cuidado recai, especialmente sobre um único membro que passa a desempenhar as atividades do cuidado, em virtude disto o cuidador familiar enfrenta muitos problemas que colocam em risco a sua saúde, devido à sobrecarga de trabalho e pouca habilidade. O objetivo deste estudo foi identificar o perfil socioeconômico e de saúde do cuidador familiar do idoso que internou no Hospital Geral Mandaqui-SP. Esta pesquisa deu-se em dois momentos. Entrevistamos no hospital 107 idosos internados, dos quais selecionamos 25 que precisariam de cuidado após a alta hospitalar. No segundo momento estabelecemos contato com o familiar na busca dos seus cuidadores, fazendo parte desta pesquisa seis cuidadoras com idade entre 27 a 77 anos, do sexo feminino, que apresentam baixa escolaridade, boas condições de saúde, restrição na vida social. Constatou-se que o cuidador familiar merece atenção, por encontrar-se despreparado para enfrentar a condição da doença prolongada. A partir desta pesquisa, foi possível mostrar ao Centro de Referência do Idoso, o perfil do cuidador familiar quanto às condições socioeconômicas e de saúde

Submitted by Fabiana Gonçalves Pinto (benf@ndc.uff.br) on 2017-08-18T16:59:35Z No. of bitstreams: 1 Lucimere Maria dos Santos.pdf: 5529959 bytes, checksum: 9280626a93020241383afc461e72a696 (MD5) / Made available in DSpace on 2017-08-18T16:59:35Z (GMT). No. of bitstreams: 1 Lucimere Maria dos Santos.pdf: 5529959 bytes, checksum: 9280626a93020241383afc461e72a696 (MD5) Previous issue date: 2017 / Mestrado Profissional em Enfermagem Assistencial / O objetivo geral é desvelar a experiência os significados percebidos pelos cuidadores/familiares de pacientes oncológicos no cuidado de lesão por pressão como subsídios para o desenvolvimento de estratégias educativas no ambiente domiciliar. Método: Trata-se de um estudo descritivo com abordagem qualitativa, ancorado no princípio da Fenomenologia de Merleau Ponty, realizado com 17 cuidadores/familiares de pacientes oncológicos, acometidos por lesão por pressão de um ambulatório de oncologia de um hospital público federal. Resultados: Após análise dos depoimentos, surgiram 3 categorias, cada uma com 2 subcategorias: Categoria 01 “Compreendendo o significado da percepção do cuidador/familiar sobre o cuidado de lesão por pressão no paciente oncológico”, subcategorias: “Vivenciando o impacto do desconhecimento e dos afetos no cuidado com a lesão por pressão” e “Renúncia de si para cuidar do familiar”. Categoria 02 “Percepções e sentimentos dos cuidadores/familiares e dos pacientes diante da lesão por pressão”, subcategorias: “Percebendo o sentimento do familiar ao cuidar do paciente acometido pela LPP” e “Percebendo o sentimento do paciente acometido por LPP”. Categoria 03 “Percepção da espiritualidade no cotidiano de cuidar da lesão por pressão”, subcategorias: “Vivenciando a espiritualidade no enfrentamento da doença” e “Percebendo o sofrimento como aprendizado”. foram construídos dois guias de orientação para o cuidado de lesão por pressão em domicilio para o cuidador/familiar e para o enfermeiro e um blog. Conclui-se: Que o significado de cuidar da lesão por pressão para os cuidadores/familiares está arraigado de afetos positivos e negativos, a partir das experiências vivenciadas pelos mesmos e que a equipe de enfermagem necessita se aproximar do cuidador/ familiar buscando compreender as necessidades e as dificuldades para a realização do cuidado com a LPP no domicílio, de modo a promover qualidade de vida ao paciente / The general goal is to reveal the experience and the meanings realized by caregivers/families of oncological patients about the assistance on wounds by pressure as a contribution for the development of educative strategies in home ambience. Method: It is a descriptive study with a qualitative approach based on the principle of phenomenology by Merleau Ponty, that was executed with 17 caregivers/families of oncological patients which ones were affected by the wound by pressure at an oncology ambulatory of a federal public hospital. Results: after the analisis of testimonies, 3 categories showed up, each one with 2 subcategories: Category 01: Understanding the meaning of the percepcion of the caregivers/families about the assistance on wounds by pressure in the oncological patient. Subcategories: "Experiencing the impact of unknowledge and the affection of the assistance on wounds by pressure" and "Resignation of self for take care of the family". Category 02: Perceptions and feelings of the caregivers/family and the patients about the wound by pressure. Subcategories: "Realizing the feeling of the family when taking care of the affected by wound by pressure" and "Realizing the feeling of the patient affected by wound by pressure". Category 03: Perception of the spirituality on the daily assistance of wounds by pressure. Subcategories: "Experiencing the spirituality on the battle against the disease" and "Realizing the suffering as a way for learning". two guid- ance guides were created for the care of pressure injury at home for the caregiver / family and for the nurse and a blog. Conclusion: The meaning of taking care of the wound by pressure for the caregivers/families is deep in positive and negative affections, and from the experiences lived for them the nursing team needs to get closer of the caregiver/family searching for a compreension about the needs and the difficulties of the assistance with the wound by pressure in the home ambience, promoting a quality life for the patient

The paper aims to examine how the wives of men with dementia experience their lives and how they perceive support from the society. The paper also aims to highlight the family care consultants´ work and views on support for families of people with dementia. Three spouses of people with dementia and three family care consultants were interviewed and the results were analyzed using Antonovsky's (1991) three theoretical concepts; comprehensibility, manageability and meaningfulness that comes from his theory Sense of coherence. The results show that the three wives whose men suffered from dementia spend most of their time, effort and energy on their husbands. They do not have time to think about their own needs and what support they feel they could use for themselves. They do not think about themselves as caregivers, they are spouses. Family care consultants are well aware of the importance of meeting and see the relatives in their lives, and denounces the importance of a support designed individually. Family care consultants understand that the most important and the best support society can provide a family care giver is that their close ones are well taken care of and given good care.

L’insuffisance cardiaque (IC) est une maladie chronique dont les symptômes sévères peuvent mener à des hospitalisations répétées. Pour gérer ces symptômes, le plan de traitement implique plusieurs auto-soins, par exemple une diète limitée en sel et en liquide, ce qui est parfois difficile à respecter. Le but de la présente étude pilote randomisée à deux groupes (n = 16 / groupe) était d’évaluer la faisabilité, l’acceptabilité et l’efficacité préliminaire d’une intervention infirmière favorisant la pratique des auto-soins des patients atteints d’IC. L’intervention est basée sur la théorie de l’autodétermination (TAD) qui promeut l’autonomie dans la pratique des auto-soins. L’autodétermination est favorisée par le sentiment de compétence perçue, d’autonomie et d’affiliation. Pour soutenir le besoin d’affiliation, un aidant principal participe à l’intervention qui consiste en cinq entrevues chez le groupe d’intervention (GI) dont deux durant l’hospitalisation et trois par un appel téléphonique suite au congé. Les interventions découlant de cette théorie incluent par exemple de proposer des choix plutôt que d’imposer des restrictions, d’éviter la critique, de favoriser l’empathie et le renforcement positif. Les entrevues ont servi également à guider les aidants principaux pour qu’ils soutiennent à leur tour l’autodétermination de leur parent atteint d’IC. Les résultats soutiennent la faisabilité et l’acceptabilité de l’intervention évaluée dans la présente étude et permettent d’améliorer la pratique des auto-soins avec des résultats favorables pour la majorité des hypothèses évaluées. Ces résultats prometteurs permettront de guider la pratique clinique et offrent des pistes de recherches futures. / Heart failure (HF) is a chronic disease with severe symptoms that may lead to repeated hospitalizations. To manage these symptoms, the treatment plan involves several self-cares, such low-salt diet and fluid restriction, which is sometimes difficult to achieve. The purpose of this randomized pilot study of two groups (n = 16 / group) was to assess the feasibility, acceptability and preliminary effectiveness of a nursing intervention aimed at improving the self-care practice in HF patient’s. The intervention is based on self-determination theory (SDT) which promotes autonomy in self-care practice. Seldetermination is enhanced by individual’s perceived competence, autonomy and relatedness. To sustain affiliation need, a primary caregiver participates in the intervention, which consists of five interviews with the experimental group (EG), two during hospitalization and three by a telephone follow-up after discharge. Interventions based on this theory include offering choice rather than imposing restrictions, avoiding criticism, encouraging empathy and positive reinforcement. The interviews were also used to guide the primary caregivers so they could themselves support their HF relatives’ with self-determination. The results support the feasibility and acceptability of the intervention evaluated in this study and help improve self-care practice with positive results for the majority of the hypotheses tested. These promising results will guide clinical nursing practice and provide avenues for future research.

家庭照顧者的照顧負荷沉重，其多表達有支持性服務的需要，故針對家庭照顧者使用支持性方案之經驗，頗值得研究加以探討。本研究目的為瞭解家庭照顧者使用支持性方案的情形為何，進而探索使用服務期間從事活動的經驗，剖析家庭照顧者在使用支持性服務期間重新回復能量之過程。 本文採質性研究法，以深度訪談法蒐集資料，訪談樣本來自台灣失智症協會，共有4位失智症照顧者接受訪談。主要研究結果如下﹕ 1.家屬使用「各項家庭照顧者支持性方案」的情形，以瑞智學堂、瑞智互助家庭、家屬聯誼會為例，進而比較上述三項服務方案之異同：(1)學堂到互助家庭，家屬「聚在一起」和「舒緩的時間」更多；家屬更懂得「釋放關心」。(2)從學堂到家屬聯誼會：「家屬未經組織的團體聚會」到「成為團體成員後的聚會」。(3)服務對象與受惠對象方面，學堂服務對象以「失智長者為主，長者受惠較多」；互助家庭以「長者和家屬為主，家屬受惠較多」；家屬聯誼會以「家屬為主，家屬受惠較多」；但其實「長者與家屬之間具有相互性」，家屬獲益之後，更能以健康的身心靈來提供長者的照顧，相對的，長者的功能得以維持或減緩退化，亦有益於家屬提供照顧。 2.家屬的需求與動力是推動支持性方案重要的推展，從學堂到互助家庭的歷程，家屬與長者有三個階段的活動經驗，包含麻將班、烹飪班以及樂樂班，其顯示家屬有時間、空間以及活動參與的需求。 3.家屬使用服務期間從事活動獲得「心理喘息」的要素，可就休閒與休息、自我效能感、團體的歸屬感、採取行動的層面進行分析，分別為(1)休閒與休息：「才能展現」、「享受說話」以及提升生活「滿意感」；(2)自我效能感：「學習」、「突破」、「成就感」的過程，增進自我效能感；(3)團體的「歸屬感」，以及(4)社會貢獻的使命和生命的「意義感」，可見家屬由照顧者蛻變成助人者的軌跡。 / The caregivers in families carry a heavy responsibility, and many of them express the need for supportive services. As such, their experience in using supportive programs warrants further study and examination. In this study, we aim to first understand how such programs are being used. Next, we examine the restorative process in which caregivers use such services to gain respite. This study used the qualitative research approach, and collected data from Taiwan Alzheimer's Disease Association and included semi-structured in-depth interviews with four caregivers of the elderly with dementia. The research findings were listed below: 1.We studied the following three supportive programs and analyzed their similarities and differences: the School of Wisdom, the Family of Wisdom, and the Family Club. (1) As the group progresses from the School of Wisdom to the Family of Wisdom, family members have more and more time to spend together and respite time; they also tend to show more care for others. (2) As the group progresses from the School of Wisdom to the Family Club, unorganized group gatherings evolve into organized gatherings for members of the group. (3) The target participants for the School, the Family and the Club are, respectively, senile seniors, seniors and their families, and families; the beneficiaries of the programs are seniors, families, and families. However, there is also an interrelation between seniors and their families: families who benefit from improved mental, physical and spiritual health are better able to care for their seniors. Vice versa, it is easier for families to care for seniors who are able to maintain or mitigate the degeneration of their daily functions. 2.The needs and motivations of families are pivotal drivers for supportive programs. Throughout the evolution from the "School" to the "Family", families and seniors go through three stages of participation in activities, namely, mahjong classes, cooking classes and hobby classes. The progress reveals the families' need for respite time and space and their levels of participation. 3.Families enjoy a restorative mental break by participating in activities. We analyzed the key elements of this mental break: leisure and rest, self-efficacy, belongingness, and level of participation. (1) Leisure and rest: display of talent, enjoyment of talking, and enhanced satisfaction toward life. (2) Self-efficacy: enhanced self-efficacy through the process of learning, breakthrough and sense of achievement. (3) Belongingness: the sense of belonging to a group. (4) Level of participation: the sense of mission to contribute to the society and meaning of life demonstrated by the families show an evolution from being the caregiver to the one who helps others.

Made available in DSpace on 2016-06-02T20:30:06Z (GMT). No. of bitstreams: 1 4641.pdf: 6125227 bytes, checksum: 970bd26736f86edaf687753b76fe7c03 (MD5) Previous issue date: 2012-08-21 / The research literature indicates that the relationship between physiotherapists and family caregivers of children with neurological disorders has a significant impact on the efficacy of the children s treatment. However, the fragmentation of knowledge and the tendency to over-specialize can result in the preparation of professionals who understand organic pathology and treatment techniques, but who lack skills to deal with the interpersonal and educational issues that underlie their relationship with the children s family caregivers. In addition, very few researchers have published studies analyzing the effectiveness of strategies that physiotherapists could be used to increase the involvement of family caregivers. As such, the objectives of the current research program were to: a) identify physiotherapy practicum students conceptions about (Study1) and abilities (Study 2) to involve a child s family member in the treatment process, and b) evaluate an intervention program that was designed to increase the students abilities to involve family caregivers in this process (Study 3). The research program was conducted with physiotherapy practicum students from a high-caliber course, who were working in a university clinic. Study 1 was conducted with 10 students, using semi-structured interviews. The students recognized the importance of including a family member in the treatment of children, but they perceived their preparation to deal with this family member as being insufficient. In Study 2, seven students were filmed when they were in the presence of the caregivers, over the course of four weeks. In 34 of the 73 film segments (46.5%), the students did not interact with the family caregivers. The students spoke with the caregivers in 26 film segments (33%), primarily to initiate and maintain a conversation (n = 18) or to ask questions (n = 9). Thus, the results of Studies 1 and 2 indicated the need for an intervention program for this population. In Study 3, such a training program was evaluated. The eight-hour program aimed to teach basic skills related to behavior analysis, family-centered practices, and social skills. Participants included 5 practicum students. Each training program session included a pre-test on the concepts that were to be learned, a teaching segment to explain these concepts, interactive tasks, practice exercises and a post-test. Based on a comparison of the results on the pre and post-tests, it was apparent that the students acquired new knowledge during the program. A comparison of film segments recorded at the beginning and the end of the training program indicated that the students increased their use of the following strategies to involve the children s family caregivers: provide feedback, ask for assistance with an exercise, offer praise, converse, and ask questions. In addition, the film segments for the group of students who completed the intervention program (IG), were compared with the film segments from Study 2, using these students as a comparison group (CG). The behavior of both groups in the initial film segments was highly similar, but, one month later, the ability of the IG students to involve the caregivers was greater than that of the CG students. Thus, the results indicate that the intervention was effective. As such, it would be important to continue applying this intervention so as to evaluate the effects for a larger number of participants, and to conduct a follow-up study to verify the permanency of the behaviors that are acquired. In conclusion, this research program constitutes an example of an interdisciplinary approach to the training of physiotherapists, aligned with the philosophy of a universal health system, aiming for a holistic approach and excellence in caring for children with neurological disorders and for their families. / A literatura aponta que o vinculo entre o fisioterapeuta e cuidadores familiares de crianças com transtornos neurológicos afeta a eficácia da terapia infantil. No entanto, a fragmentação do conhecimento e a tendência de formar profissionais especializados podem levar ao preparo de profissionais para lidar com os aspectos orgânicos da patologia e as técnicas de tratamento, mas pouco capacitados para abordar as demandas interpessoais e educativas que sustentam sua relação com os cuidadores familiares das crianças. Além disso, poucos pesquisadores publicaram estudos analisando a eficácia de estratégias que fisioterapeutas poderiam usar para aumentar o envolvimento de cuidadores familiares. Portanto, esse programa de pesquisa teve como objetivos: a) identificar concepções (Estudo 1) e repertório (Estudo 2) de estagiários de fisioterapia para envolver o familiar que acompanha a criança no processo terapêutico e b) avaliar um programa de capacitação desenvolvido para ampliar o repertório dos estagiários para envolver cuidadores familiares neste processo (Estudo 3). O programa de pesquisa ocorreu em uma clínica universitária, junto a estagiários de um curso de fisioterapia de alta qualidade. No Estudo 1, participaram 10 alunos, que responderam a entrevistas semi-estruturadas. Observou-se que os alunos reconheceram a importância de incluir um familiar no tratamento de crianças, mas que perceberam seu preparo para lidar com este familiar como sendo insuficiente. No Estudo 2, filmou-se o comportamento de sete alunos quando estavam na presença dos cuidadores, durante quatro semanas, em situação natural de atendimento. Em 34 das 73 cenas filmadas (46,5%), os estagiários não interagiram com os cuidadores. Os estagiários conversaram com os cuidadores em 26 cenas (33%), com predominância de comportamentos envolvendo iniciar e manter conversação (n=18) e fazer perguntas (n=9). Assim, os resultados dos Estudos 1 e 2 indicaram necessidade de capacitação dessa população. No Estudo 3, então, avaliou-se uma capacitação com este propósito. O programa, com oito horas de duração, visou ensinar habilidades básicas ligadas à análise do comportamento, práticas centradas na família e habilidades sociais. Participaram da capacitação 5 estagiários. Cada sessão incluiu um pré-teste sobre os conceitos a serem trabalhados, uma apresentação dos conceitos principais, vivências, exercícios de fixação e um pós-teste. Comparando a pontuação nos pré e pós-testes, observou-se que os alunos adquiriram conhecimentos novos durante a intervenção. A comparação de filmagens gravadas no início e no final da capacitação indicou que os estagiários ampliaram seu uso das seguintes estratégias para aumentar o envolvimento dos cuidadores familiares: emitir feedback, pedir ajuda com um exercício, elogiar, conversar e fazer perguntas. Além disso, comparou-se as cenas filmadas com o grupo de alunos que participaram da intervenção (GI) com as filmagens do Estudo 2, usando este grupo de alunos como um Grupo de Comparação (GC). Encontrou-se similaridade nos comportamentos dos alunos de ambos os grupos nas filmagens iniciais, mas, um mês depois, as habilidades dos estagiários do GI para envolver os cuidadores foi superior em relação aos do GC. Dessa maneira, os resultados apontam para a eficácia da capacitação. Sendo assim, seria importante continuar administrando o programa de capacitação para avaliá-lo junto a um número maior de participantes, além de conduzir estudos de follow-up para averiguar a estabilidade dos comportamentos adquiridos. Conclui-se que este programa de pesquisa oferece um exemplo da abordagem interdisciplinar na formação de fisioterapeutas, alinhada à filosofia do Sistema Único de Saúde, visando a integralidade e excelência do cuidado de crianças com transtornos neurológicos e de suas famílias.

Submitted by Erika Demachki (erikademachki@gmail.com) on 2015-11-13T19:23:03Z No. of bitstreams: 2 Dissertação - Lara Teixeira Karst - 2015.pdf: 5787814 bytes, checksum: 36f689efd5661110272211b3436617fa (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Approved for entry into archive by Erika Demachki (erikademachki@gmail.com) on 2015-11-13T19:29:28Z (GMT) No. of bitstreams: 2 Dissertação - Lara Teixeira Karst - 2015.pdf: 5787814 bytes, checksum: 36f689efd5661110272211b3436617fa (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Made available in DSpace on 2015-11-13T19:29:28Z (GMT). No. of bitstreams: 2 Dissertação - Lara Teixeira Karst - 2015.pdf: 5787814 bytes, checksum: 36f689efd5661110272211b3436617fa (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Previous issue date: 2015-03-27 / Fundação de Amparo à Pesquisa do Estado de Goiás - FAPEG / This study concerns a Master’s research developed in the Post-Graduation Program of Music at the Universidade Federal de Goiás, following the research line of Music, Education, and Health. Considering the need for a multiprofissional action during palliative care, in the present study we seeked broader knowledge of home care music therapy for family caregivers of children under oncology palliative care in the late stages of the disease. The main goal was to know and analyze the sound and musical expressions of caregivers as well as understand the effects of music therapy on these subjects while caring for critically ill children. This is a qualitative research, presented as a study case. Data were collected by the researcher, who is a music therapist, through recordings and transcriptions of the music therapy sessions, which took place in the houses of caregivers of two children undergoing treatment in an oncology hospital in the municipality of Goiânia, GO. In data analysis, the expressions of the subjects were taken into consideration. To accomplish this, the theoretical reference and the analysis of the music therapy were crossed. Based on this study, we observed that music therapy alleviated caregivers’ anguish because it enabled the expression, through musical re-creation, of songs brought by them, and allowed the experience of playful situations together with their children. / Este trabalho refere-se a uma pesquisa de Mestrado desenvolvida no Programa de Pós- Graduação em Música da Universidade Federal de Goiás, na linha de pesquisa Música, Educação e Saúde. Considerando-se a necessidade de uma atuação multiprofissional nos cuidados paliativos, no presente estudo buscou-se ampliar os conhecimentos sobre a musicoterapia na assistência domiciliar aos cuidadores familiares de crianças em cuidados paliativos oncológicos em estágio avançado da doença. Teve-se por objetivo principal conhecer e analisar as expressões sonoro-musicais dos cuidadores e compreender os efeitos da musicoterapia sobre estes sujeitos durante a vivência dos cuidados com crianças gravemente enfermas. Trata-se de uma pesquisa qualitativa, na forma de estudo de caso. A coleta de dados foi realizada pela pesquisadora, que é musicoterapeuta, por meio de gravações e transcrições dos atendimentos musicoterapêuticos ocorridos na casa dos cuidadores de duas crianças em tratamento em um hospital oncológico da cidade de Goiânia, GO. Na análise dos dados, consideraram- se as expressões dos sujeitos. Para tanto, fez-se um cruzamento com o referencial teórico e a análise musicoterapêutica. Com base neste estudo, observou-se que a musicoterapia atuou no alívio das angústias dos cuidadores ao possibilitar a expressão, por meio da recriação musical, de canções trazidas por eles e ao proporcionar a vivência conjunta de situações lúdicas com suas crianças.

L'objectif de cette thèse est d'explorer la stigmatisation perçue liée à la maladie d'Alzheimer (MA) parmi une population d'aidants familiaux (enfants adultes ou conjoints) accompagnant leurs proches (conjoints ou parents) vivant avec une probable MA. Parmi les patients, non seulement, il est examiné les sources de stigmatisation envers les personnes vivant avec une probable MA associées aux réactions émotionnelles et comportementales d'affiliation ou de distance sociale de l'entourage. Mais encore il est observé les facteurs de stigmatisation qui prédisent une variation de leur qualité de vie. Parmi, leurs aidants familiaux, il est étudié les facteurs de stigmatisation qui prédisent une variation de la symptomatologie dépressive et du fardeau de soins. Dans cette relation, il est étudié le rôle modérateur du soutien social. Nos résultats indiquent parmi les patients, que la fréquence des symptômes comportementaux liés à la dépression prédisent les émotions négatives et les comportements de distance sociale de l'entourage. Aussi, nous observons que la qualité de vie du patient varie selon son lieu de résidence. Au domicile, il est observé davantage de comportements de distance sociale venant de l'entourage. Parmi les proches aidants, il est constaté que soutien social modère les effets entre les émotions négatives, les comportements de distance sociale de l'entourage envers le patient, et la symptomatologie, le fardeau de soins des aidants. Mais que le soutien social exacerbe les effets entre les émotions positives de l'entourage et le fardeau de soins. Cette thèse permet d'objectiver la stigmatisation liée à la maladie d'Alzheimer parmi les patients et leurs proches aidants. Les résultats obtenus justifieraient l'élaboration d'actions de communication centrées sur la nécessité du soutien social auprès de l'ensemble des personnes affectées par la maladie d'Alzheimer. / This thesis aims at exploring the perceived stigmatization towards persons possibly leaving with Alzheimer’s disease among the population of the family caregivers – grown-up children and spouses. Not only do we have observed sources of stigmatizations aimed at patients possibly leaving with Alzheimer’s disease, in relation with emotional reactions and either affiliation behavior, or social distancing from the family and social circle, but we have also observed factors of stigmatization leading to variations in patients’ quality of life. Amongst family caregivers, we have studied factors of stigmatization leading to changes in the associated depressive symptoms and the increased caregiver burden. With respect to the relationship induced, we have given attention to the moderating role of social support. Our results show that, among patients, the negative emotions and the social distancing behavior from social circle can be linked to the frequency of behavioral symptoms related to the depression. With respect to this observation, we show an variation in the patients’ quality of life according to the places they live in. At home, we have noted increased social distancing behavior from the social circle. Amongst the relatives caregivers, we have also noticed that social support has a moderating influence on the effects of negative emotions, the social distancing behavior from the social circle towards the patient, the symptoms and the burden of care felt by the caregivers. However, the social support exacerbates the relation between positive emotions among the relatives and the burden of care. This thesis gives us the opportunity to objectify the stigmatization process with respect to Alzheimer’s disease amongst patients and their relatives caregivers. Our results could open the way to specific communications promoting the necessity for social support in favor of the entire population concerned by Alzheimer’s disease.

Antalet anhörigvårdare av personer med demens förväntas öka under de nästkommande tio åren i samband med att antalet personer som drabbas av demenssjukdom ökar, samtidigt som den offentliga omsorgen minskar. Anhörigvårdare av personer med demens har flera stödbehov som inte är uppfyllda på grund av en bristande förståelse av deras livssituation. Syftet med denna litteraturstudie är att skapa förståelse och belysa livssituationen för anhöriga som vårdar en närstående med en demenssjukdom. För att besvara syftet har en litteratursökning gjorts i tre databaser som har resulterat i identifieringen av 15 kvalitativa studier. Tematisk analys har tillämpats på studiernas resultatavsnitt. Tre huvudteman och fem underteman har identifierats. Teman belyser anhörigvårdarna av personer med demens, deras upplevelse samt de strategierna de använder för att klara av vardagen. Livssituationen för anhörigvårdare av personer med demens ser olika ut och stödbehoven är individualiserad och beror på deras livssituation innan insjuknandet samt på sjukdomens symtom. / Family caregiving of people with dementia is expected to increase due to a declining public care and a growing number of people suffering from dementia. There is a need for better understanding of the life situation of family caregivers in order to give them the right support. The aim of this literature study is to emphasize the life situation of relatives caring for persons with dementia disease.  The methodological approach is thematic analysis av 15 qualitative studies that have been identified after a literature search conducted in three databases. The results are presented in three main themes and five sub-themes. The themes highlight the family caregivers, their experience and the strategies they use to cope with everyday life. The study concludes that the life situation of the family caregivers is individualized. Their support needs are varying according to the development of the dementia disease and the circumstances before the illness.

Bakgrund: Palliativ vård i livets slutskede inträder i övergången då patienten närmar sig livets slut och kännetecknas av en helhetssyn på människan. Vården utförs i syfte att lindra lidande och främja livskvaliteten för alla patienter med progressiv, obotlig sjukdom eller skada. Anhöriga ska också erbjudas att delta i den palliativa vården. Forskning visar att ungefär 10 procent av efterlevande riskerar att få sorgerelaterade psykiska besvär. Syfte: Syftet med studien var undersöka anhörigas upplevelser av palliativ vård vid livets slutskede. Metod: Litteraturöversikt med tio artiklar. Nio kvalitativa artiklar och en artikel med mixed-method som analyserades enligt Fribergs metod. Resultat: Huvudtemana som växte fram var kommunikation, information, anhörigstöd och delaktighet i den palliativa vården. Huvudtemana delades var för sig upp i underkategorierna kommunikation som mottogs väl, kommunikation som brast, information som förmedlades bra, undermålig information, emotionellt stöd, avsaknad av emotionellt stöd, andligt stöd, tillfredställande delaktighet, när anhöriga inte blev delaktiga. Slutsats: Anhöriga upplevde brister beträffande både kommunikation, information, delaktighet och emotionellt stöd i den palliativa vården. Detta medförde ett onödigt lidande och försämrad livskvalitet. Bristerna fick dem i värsta fall att känna sig förringade och avvisade. Anhöriga behövde en kommunikation som genomsyrades av empati och engagemang. Informationen behövde vara lättförståelig och upprepas. Anhöriga upplevde att de hade behov avemotionellt stöd i form av att bli förstådda och bekräftade i sin sorg. De upplevde också ett behov av att få delta i vården och upplevde den palliativa vården som mer positiv om de erbjöds att delta. / Background: Palliative care in the final stages of life enters the transition when the patient approaches the end of life and is characterized by a holistic view of man. The care is performed in order to alleviate suffering and promote the quality of life for all patients with progressive, incurable disease or injury. Relatives must also be offered to participate in palliative care. Research shows that about 10 percent of survivors are at risk for grief-related mental illness. Aim: The purpose of the study was to investigate relatives' experiences of palliative care at the end of life. Method: Literature overview with ten articles. Nine qualitative articles and one article with mixed method. Results: Main themes emerged were communication, information, family support and participation in palliative care. Main themes were divided separately into the sub-categories communication well received,communication broken, information conveyed well, substandardinformation, emotional support, lack of emotional support, spiritual support, satisfactory participation, when relatives did not participate. Conclusion: Relatives experienced shortcomings in terms of communication, information, participation and emotional support in palliative care. This led to unnecessary suffering and deteriorating quality of life. In the worst case, the shortcomings made them feel degraded and rejected. Relatives needed a communication that was permeated by empathy and commitment. Information needed to be easy to understand and repeat. Relatives felt they needed emotional support of being understood and confirmed in their grief. They also experienced a need to participate in care and experienced palliative care as more positive if they were offered to participate.