Made available in DSpace on 2015-04-17T15:01:34Z (GMT). No. of bitstreams: 1 arquivototal.pdf: 1939551 bytes, checksum: 009c2388721a911ca7cd83360bbe1cb5 (MD5) Previous issue date: 2010-12-16 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Speaking of the theme religiosity meant to work with a theme that has brought broad, intricate and dense concepts. However, perhaps because it was a large subject, it was interesting to be studied because it presented itself as a subject that did not come to an end. And the approach on the issue of mental health in a new look, from the psychiatric reform, has brought inherent discussions to human beings, who long ago were seen as animals, unthinking beings, with no desire and /or even without the right to life. The new approved federal legislation of number 10,216 on April 6th 2001 tries to come to effect and strives all the time to show that treatment for people who have mental illness can be different. The act gives specifications about the protection and the rights of people with mental disorders and redirects the care model of mental health mentioning the involvement of family and society to treat these patients with mental disorders. The experience and religious practice in this context brought a real breadth of the concept of illness and being in the world with social relations. This developed activity had as the general objective: identify whether the religiosity of relatives/caregivers of patients with mental illness could influence the treatment offered by the substitute service of mental health in the city of João Pessoa / PB, in particular at Centro de Atenção Psicossocial Infanto Juvenil Cirandar (Juvenile Psychosocial Care Center). This was an exploratory study of qualitative and quantitative nature. 36 people were interviewed, with women comprising 86.1% and men 13.9%, aged between 22 and 65 years old. It was found that the majority of respondents belonged to the black population with a percentage of 61.1% and with low educational level. Regarding the religious profile, it was revealed a high incidence of catholics and protestants. For data collection, the used instruments were: a semi-structured social, cultural and religious questionnaire and the Religious Attitude Scale. For further understanding on the issue of the influence of religiosity a focus group was conducted with caregivers of the patients who were diagnosed with mental disorders. The survey results met the proposed objectives of the work, which allowed the understanding, through the data collected, that most of the participants expressed that religion is not only present in their daily lives, but also influenced in their decision-making and behavior towards life. These results showed that 66% of respondents showed that religion influenced their decisions on their behavior. And a percentage of 89%, indicated that relatives/caregivers felt attached to a 'Higher Being'. Therefore, this study aimed to guide and expand the horizons for the importance that religion, and religiosity had on the lives of caregivers of patients with mental disorders, and showed that the religiosity caregivers presented in their speeches, besides giving them comfort, maturing and a knowledge of how to deal better with the storms of life, also gave them the ability to take better care of their sons and daughters. Thus, the disposition or tendency to religion or the sacred things of caregivers demonstrated its influence on the treatment of their relatives who were diagnosed with mental disorder. / Falar do tema religiosidade compreendeu em trabalhar com um tema que trouxe consigo conceitos amplos, intricados e densos. Porém, talvez por ter sido um tema tão numeroso foi interessante ser trabalhado, pois ele se apresentou como um tema que não se findou. E abordar sobre a temática da saúde mental num novo olhar a partir da reforma psiquiátrica trouxe discussões inerentes aos seres humanos que há muito tempo eram vistos como animais, bichos, como seres não pensantes, sem desejo e/ou mesmo sem direito a vida. A nova legislação federal aprovada de número 10.216 de 06 de abril de 2001 tenta ser efetivada e a todo o momento luta para mostrar que o tratamento para pessoas que tem doença mental pode ser diferente. A Lei especifica sobre a proteção e os direitos das pessoas portadoras de transtornos mentais e redireciona o modelo assistencial em saúde mental fazendo menção a participação da família e da sociedade no tratamento destes pacientes com transtornos mentais. A experiência e prática religiosa, neste contexto, trouxeram uma abrangência real do conceito doença e de ser no mundo com suas relações sociais. Tal atividade desenvolvida teve por objetivo geral: identificar se a religiosidade dos familiares/cuidadores/as de pacientes com transtornos mentais poderia influenciar no tratamento ofertado pelo serviço substitutivo de saúde mental da cidade de João Pessoa/PB, em especial o Centro de Atenção Psicossocial Infanto Juvenil Cirandar. Tratou-se de um estudo exploratório descritivo de natureza qualitativa e quantitativa. Foram entrevistadas 36 pessoas, sendo 86,1% composto por mulheres e 13,9% do sexo masculino, com idade variante entre 22 a 65 anos de idade. Foi verificado que a maioria dos entrevistados pertencia à população negra com percentual de 61,1% e com grau de instrução baixo. Quanto ao perfil religioso observou-se uma alta incidência entre católicos e evangélicos. Utilizou-se para a coleta de dados dois instrumentos: um questionário semi estruturado sócio, cultural e religioso e a Escala de Atitude Religiosa. Para aprofundamento da temática sobre a influência da religiosidade foi realizado um grupo focal com os/as cuidadores/as de pacientes que tinham diagnóstico de transtornos mentais. Os resultados da pesquisa atenderam aos objetivos propostos do trabalho, os quais possibilitaram observar através dos dados coletados, que as pessoas, em sua maioria, expressaram que a religiosidade além de estar presente no cotidiano de suas vidas, ela influenciava nas suas tomadas de decisões e emissão de comportamento de enfretamento diante da vida. Desses resultados observou-se que 66% dos sujeitos entrevistados demonstraram que a religião influenciava as decisões sobre o que eles/elas deveriam fazer. E um percentual de 89%, indicou que os familiares/cuidadores/as se sentiam unidos a um Ser Maior . Portanto, este estudo visou nortear e ampliar os horizontes em relação a importância que a religião, religiosidade teve na vida dos/as cuidadores/as de pacientes com transtornos mentais, assim como, mostrou que a religiosidade que os/as cuidadores/as apresentaram em seus discursos, além de propiciar dentro deles um conforto, uma amadurecimento, um saber melhor lidar com as tempestades da vida, deram a eles/elas, a aptidão de melhor cuidar de seus filhos e filhas. Desta forma, a disposição ou tendência para a religião ou as coisas sagradas dos/das cuidadores/as demonstraram que influenciaram no tratamento de seus parentes que apresentaram diagnóstico de transtorno mental.

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.

We evaluate if the social network structure, the percei ved support and the personal satisfaction acts on the caregiver's feeling of burden, coming from the caring of a child oran older parent with chronic invalidating illness. We used Mannheim's Instrument for Social Support (1986) and the Feeling of Burden Questionnaire (Zarit & Zarit, 1999) with 143 caregivers -50,3% mothers and 49,7% daughters. Taking into account the multivariate statistical tests, we can conclude that mothers have a larger relatives network than daughters, even though they don't significantly differ in the perception of social support. In mothers, the size of the relatives network, the everyday instrumental and the psychological crisis support diminishes the feeling of burden, as for the daughters the more intense crisis instrumental perceived support diminishes the same feeling. / Se evalúa si la estructura de la red social, el apoyo percibido y su nivel de satisfacción personal inciden en el sentimiento de sobrecarga del cuidador, derivado de la asistencia de un hijo o de un progenitor anciano con una enfermedad crónica invalidante. Con tal fin, fueron administrados a 143 cuidadoras -50,3% madres y 49,7% hijas- el Cuestionario sobre Apoyo Social de Mannheim (1986) y el Cuestionario sobre Sentimiento de Carga de Zarit y Zarit (1999). A partir de las pruebas multivariadas de significación estadística, se puede concluir que las madres presentan una red de parientes mayor que las hijas, aunque no se diferencian significativamente en la percepción del apoyo social. En ellas, el tamaño de la red de parientes, el apoyo instrumental cotidiano y psicológico en crisis aminora el sentimiento de sobrecarga, mientras que en las hijas lo disminuye la mayor intensidad de apoyo instrumental en crisis percibido por ellas.

Submitted by Erika Demachki (erikademachki@gmail.com) on 2017-05-15T19:31:47Z No. of bitstreams: 2 Tese - Cristiane José Borges - 2017.pdf: 6795387 bytes, checksum: df3f07fbc7383b232fa129143a36710f (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Approved for entry into archive by Luciana Ferreira (lucgeral@gmail.com) on 2017-05-16T12:07:16Z (GMT) No. of bitstreams: 2 Tese - Cristiane José Borges - 2017.pdf: 6795387 bytes, checksum: df3f07fbc7383b232fa129143a36710f (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Made available in DSpace on 2017-05-16T12:07:16Z (GMT). No. of bitstreams: 2 Tese - Cristiane José Borges - 2017.pdf: 6795387 bytes, checksum: df3f07fbc7383b232fa129143a36710f (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) Previous issue date: 2017-03-27 / INTRODUCTION: The process of population aging is a worldwide phenomenon and, simultaneously, a new social role emerges - the informal caregiver-, seen as an essential component to promote elderly’s quality of life in some dependency situation at home. OBJECTIVE: To describe the construction and implementation of care and support strategies for elderlies’ informal caregivers through the Community Based Participatory Research. METHOD: A descriptive study guided by Community Based Participatory Research (CBPR) principles and carried out through the organization of a Community Advisory Committee (CAC), which involved academic and community participants. The study was attended by 384 people, nine community partners, 255 professionals working in family health strategies and 120 elderlies’ informal caregivers. The research was divided into the following phases: 1 - establishment of the community partnership; 2 - identification of problems related to elderly’s informal caregiver; 3 - prioritization of problems related to elderly’s informal caregiver; 4 - capacity survey of community strengths, dynamics and resources; 5 – arrangement of strategies, method, support and care interventions to elderly’s informal caregiver; 6 - implementation of strategies, method, support and care interventions to elderly’s informal caregiver; 7 - data analysis by CAC members; 8- dissemination of results obtained with CAC partnership; 9 - maintenance, CAC sustainability and partnerships evaluation. For the results’ analytical process, the content analysis proposed by Bardin was used for qualitative data and the descriptive statistical analysis was used for quantitative data. The Bioecological Theory of Human Development was adopted as a complementary basis for data analysis. RESULTS: Through the CAC constitution, there were identified, in a collective way, 17 problems faced in the elderly’s informal caregiver daily life. The use of the Severity, Urgency and Trend matrix allowed these problems prioritization for decision making. This process mobilized the construction of an action plan composed by five strategies: 1 - teaching of CAC members about the concepts recommended to define the caregiver role; 2 -raising the knowledge of Family Health Strategy professionals about the importance of including the informal caregiver as a care focus; 3 - performance of the 1st Multiprofessional Care Meeting for Elderly and Informal Caregiver; 4 - recording of the city’s informal caregivers of elderly people; 5 - qualification of the elderlies’ informal caregivers. CONCLUSION: The use of Community Based Participatory Research enabled the community partners’ empowerment, that mobilized themselves in support of elderlies’ informal caregivers, developing actions that included the mapping of the city’s informal caregivers of elderly people, mobilization and qualification of the Family Health Strategy professionals, and the organization of care spaces. In this process, it was verified that this research approach strengthens health democratization by promoting greater involvement and social protagonism of community partners, creating ideas and concrete actions for the establishment of care strategies for the elderlies’ informal caregivers. / INTRODUÇÃO: O processo de envelhecimento populacional é um fenômeno mundial e, concomitante a ele, emergiu um novo papel social – o cuidador informal –, visto como uma peça elementar para promover a qualidade de vida do idoso em alguma situação de dependência no domicílio. OBJETIVO: Descrever a construção e a implementação de estratégias de atenção e suporte aos cuidadores informais de idosos por meio da Pesquisa Participante Baseada na Comunidade. MÉTODO: Estudo descritivo guiado pelos princípios da Pesquisa Participante Baseada na Comunidade e realizado a partir da organização de um Comitê de Assessoria Comunitária (CAC), que envolveu participantes acadêmicos e da comunidade. Participaram do estudo 384 pessoas, sendo nove parceiros da comunidade, 255 profissionais que atuam nas estratégias saúde da família e 120 cuidadores informais de idosos. A investigação foi dividida nas seguintes fases: 1 - formação de parceria com a comunidade; 2 - identificação de problemas relacionados ao cuidador informal de idoso; 3 - priorização de problemas relacionados ao cuidador informal de idoso; 4 - levantamento das capacidades de pontos fortes, dinâmicas e recursos da comunidade; 5 - planejamento de estratégias, método e intervenções de atenção ao cuidador informal de idoso; 6 - implementação de estratégias, método e intervenções em atenção ao cuidador informal de idosos; 7 - análise dos dados pelos membros do CAC; 8 - divulgação dos resultados obtidos com a parceria do CAC; 9 - manutenção, sustentabilidade do CAC e avaliação das parcerias. Para o processo analítico dos resultados, utilizou-se a análise de conteúdo proposta por Bardin, para os dados qualitativos, e a análise estatística descritiva, para os dados quantitativos. Adotou-se como fundamentação complementar para análise dos dados a Teoria Bioecológica do Desenvolvimento Humano. RESULTADOS: A partir da constituição do CAC identificaram-se, de maneira coletiva, 17 problemas enfrentados no cotidiano do cuidador informal de idoso. O uso da matriz de Gravidade, Urgência e Tendência possibilitou a priorização desses problemas para a tomada de decisão. Esse processo mobilizou a construção de um plano de ação composto por cinco estratégias: 1 - capacitação dos membros do CAC sobre os conceitos preconizados para definir o papel do cuidador; 2 - sensibilização dos profissionais da Estratégia Saúde da Família sobre a importância de incluir o cuidador informal como alvo de cuidados; 3 - realização do I Encontro Multiprofissional de Atenção à Pessoa Idosa e ao Cuidador Informal; 4 - cadastramento dos cuidadores informais de idosos do município; 5 - qualificação dos cuidadores informais de idosos. CONCLUSÃO: O uso da Pesquisa Participante Baseada na Comunidade possibilitou o empoderamento dos parceiros comunitários que se mobilizaram em prol dos cuidadores informais de idosos, desenvolvendo ações que incluíram o mapeamento dos cuidadores informais no município, a mobilização e a qualificação de profissionais da Estratégia Saúde da Família, e também a organização de espaços de cuidados. Nesse processo, constatou-se que essa abordagem de pesquisa fortalece a democratização da saúde por promover maior envolvimento e protagonismo social dos parceiros da comunidade, gerando ideias e ações concretas para o estabelecimento de estratégias de atenção aos cuidadores informais de idosos.

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

The purpose of this study was to examine the relationship between life stressors, resources, and psychological symptomatology of 20 family caregivers of Alzheimer's patients. Stressors were categorized as stressors specific to the caregiving role and general life stressors. Resources were also categorized as resources specific to the caregiving role and general life resources. Multiple regression determined which stressors, resources, and demographic variables predicted psychological symptomatology. Specific stressors that were significant predictors included: caregiving events, caregiving event chronicity, and mean burden scores. Significant general stressors included: size of caregivers' household, non-caregiving events and non-caregiving event chronicity. Significant resources included: other caregivers, the duties other caregivers provided, and caregiver's educational level. No Other Demographic Variables were found to be significant predictors.

The purpose of this study was to examine the effect of an intervention program for Alzheimer's patients on coping efficacy of their family caregivers. Using a pre-post repeated measures design, 16 family caregivers were interviewed before and after a medical, nursing, and social service intervention. Self-report measures, adjusted for caregiver satisfaction and caregiver mastery, were used to determine if there was a change in: resources, burden, and coping efficacy with caregiver specific and general life events. Results showed a marginal effect [F = 2.6, df(4,10), p<.10] for the omnibus MANCOVA. Most of this change was due to an increase in resources. Covariates of caregiver satisfaction and mastery were correlated with average burden. Results suggest that interventions such as this will be helpful for family caregivers of Alzheimer's patients.

Bakgrund: När anhöriga vårdar palliativ närstående i hemmet behöver de ett fullgott stöd från hälso- och sjukvården. Detta för att klara av omvårdnadssituationen samt parallellt hantera sorgeprocessen under hela sjukdomsförloppet. Hälso-och sjukvårdspersonal behöver kunna fånga upp och förse anhörigvårdare med rätt insatser för att bibehålla deras hälsa och livskvalitet. Syfte: Syftet är att beskriva anhörigvårdares upplevelser av att vårda palliativ närstående i hemmet. Metod: En kvalitativ litteraturöversikt grundad på tio vetenskapliga artiklar. Resultat: Många anhöriga känner ambivalens inför sin roll som anhörigvårdare. För att hantera denna roll är många anhöriga i behov av en tydlig roll- och ansvarsfördelning, både mellan hälso- och sjukvårdspersonal men även andra inblandade parter. Flera anhöriga belyser en önskan om att få möjlighet till mental och känslomässig förberedelse för att växa in i sin roll som anhörigvårdare. De viktigaste faktorerna för att vårda närstående med framgång är anhörigas känsla av säkerhet, trygghet och tillit till hälso- och sjukvårdspersonal. Anhöriga ställs inför varierande utmaningar vilket leder till behov av olika former av stödinsatser och information från hälso-och sjukvårdspersonal. Konklusion: För att klara av rollen som anhörigvårdare behöver anhöriga känna att de får tillgång till rätt och adekvat stöd från hälso-och sjukvårdspersonal samt inblandade parter. / Background: Relatives’ nursing their next of kin facing end of life at home, needs adequate support from the healthcare to successfully handle the caring situation as well as their grieving process during the illness trajectory. Healthcare professionals need to be interceptive and provide the right interventions to maintain the health and quality of life in family caregivers Aim: To describe family caregivers’ experiences of nursing a relative facing end of life in a home setting. Method: Qualitative literature review based on ten scientific articles. Findings: Experiences of ambivalence towards the role of family caregivers. To manage the family caregiver role distinct distribution of care responsibilities between health care professionals is needed, as well as an expressed desire for mental and emotional preparedness to grow in their role as family caregiver. Important considerations to successful family caregiving are the relatives’ feelings of security and trust towards the healthcare professionals. Varying challenges in family caregiving need to be addressed and supported by healthcare professionals. Conclusion: To master the family caregiver’s role it’s important to get access to right and timely support from healthcare professionals as well as involved parties.

Bakgrund Allt fler personer väljer att leva sin sista tid i livet i hemmet och att även avlida där. För att kunna göra detta är närståendes deltagande avgörande och deras vårdinsatser är väsentliga för att möjliggöra palliativ vård i hemmet. Stöd till närstående är en naturlig del av ramverken för palliativ vård. Syfte Att beskriva närståendes upplevelser av att vårda en familjemedlem vid livets slutskede i hemmet. Metod En strukturerad litteraturöversikt med inslag av systematisk översiktsmetodologi genomfördes för att identifiera relevant forskning publicerad åren 2014 till 2024. Tolv artiklar med kvalitativ ansats valdes ut och analyserades genom en sammanställning av likheter och skillnader. Utifrån detta formades fyra olika teman som därefter delades in i underkategorier. Resultat Närstående försummar sig själva och prioriterar den döende personens behov, vilket leder till ett komplext samspel av känslor och utmaningar som påverkar deras välbefinnande. Att anta rollen som närståendevårdare kan utlösa förändringar i relationer och konflikter i familjen. Resultaten betonar närståendes behov av kunskap och stöd. Slutsats Genom att identifiera utmaningar som närstående står inför och tillgodose deras behov kan sjuksköterskor och beslutsfattare genomföra förändringar för att förbättra närståendestödet och främja meningsfull vård i livets slutskede. / Background More people are choosing to spend their final days at home and pass away there. The involvement of loved ones is crucial to enable home-based palliative care, with their caregiving efforts being essential. Supporting loved ones is inherent in palliative care frameworks. Aim This literature review aims to describe the experiences of family caregivers providing end-of-life care to a family member at home. Method A structured literature review with elements of systematic review methodology was conducted to identify relevant research published from 2014 to 2024. Twelve articles with a qualitative approach were selected and analyzed through a synthesis of similarities and differences. Based on this, four distinct themes were formulated, which were then further divided into subcategories. Results Caregivers often prioritize the needs of the dying over their own, leading to complex emotions and challenges that affect their well-being. Assuming the caregiving role can also impact relationships and lead to conflicts within the family. The findings emphasize the importance of knowledge and support for family caregivers. Conclusions By identifying challenges faced by caregivers and addressing their needs, nurses and policymakers can implement changes to enhance caregiver support and promote meaningful end-of-life care.

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