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No. of bitstreams: 1 alcimarmarcelodocouto.pdf: 1174393 bytes, checksum: d10bc4b8caf97865502692d0c89dcede (MD5) Previous issue date: 2016-08-16 / Com o processo de envelhecimento populacional e aumento da incidência das doenças crônico degenerativas, de déficit cognitivo e prejuízo da capacidade funcional, a dependência de cuidados no domicilio torna-se um importante problema de saúde pública. O objeto de investigação deste estudo constituiu-se nas vivências e experiências de cuidar de idosos dependentes no contexto domiciliar por cuidadores, enfocando-se as práticas do cuidador familiar que apresentou maiores níveis de sobrecarga e desconforto emocional no desempenho deste papel. Objetivou-se analisar as experiências de cuidar de idosos dependentes no domicilio por um cuidador familiar que apresente sobrecarga e desconforto emocional no papel desempenhado. Trata-se de um trabalho de pesquisa com abordagem metodológica mista, na qual foram adotados critérios metodológicos da pesquisa quantitativa bem como da pesquisa qualitativa. Numa primeira etapa, foi desenvolvido um estudo de caso descritivo e exploratório, para a caracterização do grupo de cuidadores familiares de idosos dependentes vinculados ao Ambulatório de Geriatria e Gerontologia do HU/UFJF, assim como para a avaliação do nível de sobrecarga e desconforto emocional apresentado por esses familiares. A segunda etapa consistiu em uma investigação qualitativa, onde adotou-se a Teoria Fundamentada nos Dados (TFD), para a compreensão do processo de cuidar desempenhado por familiares com diferentes padrões sócio culturais. A pesquisa teve dois cenários, o ambulatório de geriatria e gerontologia e o ambiente domiciliar. Foram incluídos na primeira etapa 27 cuidadores familiares de idosos com dependência parcial ou importante e na segunda etapa nove destes cuidadores. Os resultados do estudo de caso indicaram que, os cuidadores de idosos são em sua maioria mulheres, filhas, na faixa etária de 40 a 49 anos, casadas ou em união estável, pertencentes à classe C, com outra ocupação além de cuidar e que abandonaram atividades de lazer. Em relação à taxa de sobrecarga, os sujeitos da pesquisa apresentaram predomínio de sobrecarga moderada a severa e 44,5% apresentaram desconforto emocional. Na fase qualitativa chegou-se a quatro categorias principais: “Tornando-se cuidador”, “As vivências de ser cuidador de idoso dependente”, que se constituiu na categoria central do estudo, “Demandas resultantes do processo de cuidar de idosos dependentes por um familiar” e “Busca por apoio e capacitação”. A categoria central permitiu compreender que as vivências do familiar como cuidador apresentam aspectos positivos e aspectos negativos. Em relação aos aspectos positivos destacaram-se os sentimentos positivos na relação com o familiar dependente, como afetividade, solidariedade e gratificação, os momentos de interação entre cuidador e idoso dependente e a manutenção da autoestima diante de situações de dificuldades e de comprometimento das suas próprias condições de saúde. Quanto aos aspectos negativos vivenciados pelo cuidador, foi identificado o abandono do trabalho para cuidar, a vida afetiva ocupando um segundo plano, o comprometimento das atividades sociais, principalmente de lazer, alterações no processo saúde - doença, dificuldades em relação ao sono e repouso e presença constante de sentimentos negativos em seus cotidianos. Com o desenvolvimento deste estudo, espera-se contribuir com as atividades de acompanhamento e suporte dos familiares cuidadores, principalmente através de atividades educacionais da Enfermagem e equipe interdisciplinar, que atendam as necessidades individuais de cada cuidador, contribuindo para diminuir a sobrecarga sobre ele. Além de contribuir para que o idoso dependente usuário do SUS receba um tratamento resolutivo e humanizado através de um ambiente familiar estruturado para apoiá-lo. / With the aging population and increased incidence of chronic degenerative diseases, cognitive impairment and impaired functional capacity, dependence on care in the home becomes an important public health problem. The object of this research study was based on experiences and experiences of caring for dependent elderly by caregivers in the home context, focusing on practices are family caregivers who had higher levels of burden and emotional distress in this role. This study aimed to analyze the experiences of caring for elderly dependents in the household for a family caregiver to present overload and emotional distress in the role. This is a research paper with mixed methodological approach, which adopted methodological criteria of quantitative research and qualitative research. In a first step, we developed a case study descriptive and exploratory, to characterize the group of family caregivers of dependent elderly linked to the Clinic of Geriatrics and Gerontology HU / UFJF, as well as to assess the level of burden and emotional distress presented for these families. The second stage consisted of a qualitative research, which adopted the Grounded Theory (GT) to understand the process of care performed by family with different socio-cultural patterns. The research had two scenarios, the outpatient geriatrics and gerontology and home environment. Were included in the first stage 27 family caregivers of older adults with partial dependency or important and in the second stage nine of these caregivers. The results of the case study indicated that the caregivers of the elderly are mostly women, daughters, aged 40-49 years married or in a stable, in Class C, with other business than to take care of abandoned and leisure activities. Regarding the overhead rate, the subjects showed a predominance of moderate to severe overhead and 44.5% had emotional discomfort. In the qualitative phase was reached four main categories: "Becoming a Caregiver", "The experience of being caregiver of dependent elderly", which constituted the core category of the study, "resulting demands of caring for a dependent elderly family "and" Search for support and training.” The central category that allows us to understand the experiences of the family as a caregiver have positives and negatives. Regarding the positive aspects stood out positive feelings in relation to the dependent relative, as affection, solidarity and gratification, the moments of interaction between caregiver and dependent elderly and maintaining self-esteem in situations of difficulty and commitment of their own conditions health. Regarding the negative aspects experienced by the caregiver was identified the abandonment of work to care, to love life taking a second plane, the impairment of social activities, especially leisure, changes in the health - illness, difficulties in relation to sleep and rest and constant presence of negative feelings in their daily lives. With the development of this study, is expected to contribute to the activities of monitoring and support of family caregivers, especially through educational activities of nursing and interdisciplinary team to meet the individual needs of each caregiver, helping to reduce the burden on him. Besides contributing to the dependent elderly SUS user receives a resolute and humane treatment through a structured family environment to support it.

Master of Public Health - MPH / Background: The repercussions of being HIV positive coupled by the complications of antiretroviral therapy are likely to cause distress, emotional and psychological problems particularly among children infected by the virus. The limited support services for children experiencing distress intensify the urgency to address this challenge. Despite the availability of social workers and nurses' interventions currently in place, the number of children in need of psychological care continues to increase. This is particularly true at Deborah Retief Memorial (DRM) hospital, one of the main antiretroviral therapy facilities in Kgatleng district, Botswana. Method: The purpose of this study was to explore and describe the perceptions of social workers, nurses and caregivers on key factors contributing to psychological distress of HIV positive children. A descriptive, exploratory qualitative study design that employed the use of in-depth interviews was used to conduct this study. Participants included four caregivers of HIV positive children who seek antiretroviral therapy at DRM hospital Infectious Diseases Control Clinic, together with five nurses and two social workers who worked in the same clinic. Conventional content analysis was used to analyse the in-depth interview transcripts. Results: Perceived psychological stressors for HIV positive children included disclosure of HIV status, orphanhood, social problems, lifelong treatment, stigma, poor caregiver-child relationship and lack of caregiver‟s love, care and support. However the caregivers did not fully understand the psychological distress the HIV positive children were experiencing, hence were unable to recognize it in these children. The study highlighted that major challenges faced by the health-workers included lack of qualified personnel, lack of adequate knowledge and skills, and a non-conducive working environment required to effectively assist children with psychological distress. The findings also indicated the need for education and support of caregivers and HIV positive children by the educators, family and health-worker systems. Conclusion: The profile of key stressors of psychological distress, the challenges and support needs suggested by the participants in this study can provide a framework for improving the existing services for HIV positive children with psychosocial problems. This information is important for use in training nurses and social workers involved with children with psychological behaviours.

No description available.

Bakgrund: Sveriges befolkning är beräknad att växa och studier visar på att många skulle föredra att dö i hemmet över instutitonell vårdplats. God palliativ sjukvård kräver tillgänglighet och kompetens samt följsamhet till de fyra hörnstenarna. Patienter känner en stress över att involvera anhöriga i deras situation därför är det viktigt att ta reda på hur de anhöriga ser på situationen.  Syfte: Syftet med litteraturstudien är att beskriva anhörigas upplevelser av palliativ vård i hemmet. Metod: Litteraturstudie baserad på nio kvalitativa studier. Data insamlades från Databaserna Cinahl och Psycinfo. Sökord för att forma korrekt söksträng innehöll: palliative care, family, family perspective mm. Med avgränsningar så som english text och år:2000-2020. Analys utfördes enligt en femstegsanalys. Resultat: Två tema hittades med tre respektive sub-tema. Delaktighet och Relationer var huvudtemana. Sub-temana bestod av: Förändring i vardagen; Ansvar; Tillräcklig eller bristfällig information; Relationen med formella vårdgivare; Relationen med övrig släkt och vänner; Relationen med patienten. Konklusion: Vården hemma hos patienter bör alltid tänka på att de närstående som bor, eller tillfälligt bor, tillsammans med patienten också är en del av vården som behöver stöd, hjälp och information. / Background: Sweden's population is expected to grow, studies show that many would prefer to die at home over institutional place of care. Good palliative care requires accessibility and competence and is designed from the four cornerstones. Patients feel a stress over involving relatives in their situation, therefore it is important to find out how the relatives view the situation. Aim: The purpose of this study is describing relatives' experiences of palliative care at home. Methods: Literature study based on nine qualitative studies. Data were collected from the Cinahl and Psycinfo databases. Keywords forming the correct search string contained: palliative care, family, family perspective etc. With boundaries such as english text and year: 2000-2020. Analysis was performed according to a five-step analysis. Result: Two main themes were identified with three sub-themes respectively. Participation and Relationships were the main themes. Sub-themes consisted of: Change in everyday life; Responsibility; Sufficient or incomplete information; The relationship with formal caregivers; The relationship with other relatives and friends; The relationship with the patient. Conclusion: At home caretakers should always keep in mind that the relatives who live, or temporarily live, together with the patient are also part of the care that needs support, help and information.

Bakgrund: I Sverige lider cirka 130 000 –150 000 personer av en demenssjukdom och i världen är siffran cirka 47 miljoner. Med en demenssjukdom följer kognitiva nedsättningar såsom bortfall av närminne, orientering, förståelse och språk men även beteendemässiga symtom, exempelvis ångest, hallucinationer och vanföreställningar. Den globalt ökande åldern resulterar i fler åldersrelaterade sjukdomar som exempelvis demenssjukdomar. Allt fler personer vårdas en längre tid i hemmet, ofta av äldre släktingar. Formella vårdare förklarar vikten av att förstå patientens upplevelser och behov och av att fokusera på patientens resurser och kapacitet. Att vårda en person med demenssjukdom är tungt både psykiskt och fysiskt för utbildad vårdpersonal och kan således vara en tung börda för närstående som blir vårdare till en anhörig med en demenssjukdom. Syfte: Syftet var att beskriva närståendes upplevelser av att vårda en anhörig med demenssjukdom. Metod: Litteraturöversikten har genomförts av resultatet från tolv kvalitativa vetenskapliga artiklar som hämtats från databaserna Cinahl Complete och PubMed. Sökning kombinerades av ämnesord och fritextsökning som svarade till valt syfte. Valda artiklars resultat bearbetades och analyserades. Resultat: I resultatet redovisas två huvudteman som vardera har underteman. Det första huvudtemat (1); Rollen som vårdare, med fem underteman; Att anpassa livet, Relationen till den anhöriga, Ensamhet, Ansvar och Oro inför framtiden. Det andra huvudtemat (2); Behov av stöd, med fyra underteman; Information, Stödgrupper, Avlastning och Familj och vänner. Slutsats: Resultatet visar att närstående som vårdar anhöriga med demenssjukdom har ett stort behov av information, stöd och avlastning, både psykisk och fysisk. De närstående måste få bättre förståelse, information och stöd från samhället och den formella vården för att få verktygen att försöka bibehålla sin egen och den anhörigas hälsa och livskvalitet. / Background: In Sweden, approximately 130,000 –150,000 people suffer from dementia and the figure is approximately 47 million globally. With dementia comes cognitive impairments such as loss of short-term memory, orientation, comprehension and language, there are also behavioral symptoms, such as anxiety, hallucinations and delusions. The increasing age of the world population results in more age-related diseases such as dementia. More people are being cared for at home for a longer period of time, often by older relatives. Formal caregivers explain the importance of understanding the patient's experiences and needs and of focusing on the patient's resources and capacity. Caring for a person with dementia is a heavy burden both mentally and physically for trained care staff and can thus be a heavy burden for relatives who become caregivers for a family member with dementia. Aim: The aim of this study was to describe relatives' experiences of caring for a family member with dementia. Method: The literature review has been carried out on the results of twelve scientific articles with a qualitative approach, retrieved from the Cinahl Complete and PubMed databases. Searches were combined with subject words and free text searches that corresponded to the aim of the study. The results of selected articles were processed and analyzed. Results: The result reports two main themes, each with sub-themes. The first main theme (1); The role of caretaker, with five sub-themes; Adapting life, the relationship with the relative, loneliness, responsibility and anxiety for the future. The second main theme (2); Need for support, with four sub-themes; Information, Support Groups, Relief and Family and Friends. Conclusion: The results show that family caregivers who care for relatives with dementia have a great need for information, support and respit, both mentally and physically. The relatives must receive better understanding, information and support from society and formal care to get the tools to try to maintain their own and the relative's health and quality of life.

Bakgrund: När en familjemedlem får en palliativ cancerdiagnos sker vården ofta i hemmet av anhörigvårdare. Ett palliativt team och sjuksköterska från hemsjukvården kan också hjälpa till i familjemedlemmens omvårdnad. De stödformer som finns till anhörigvårdare är få. Syfte:  Att beskriva anhörigvårdares upplevelser av att vårda sin familjemedlem med palliativ cancerdiagnos i hemmet. Metod: Litteraturöversikt, artiklar.  Resultat: Anhörigvårdare som vårdar sin familjemedlem med palliativ cancerdiagnos i hemmet har flera olika upplevelser gällande utmaningar, med- och motgångar och stöd. De påverkas av sömnbrist, ekonomisk påverkan och känslor av oro och otillräcklighet. Hur mycket ansvar de tar över att vårda sin familjemedlem beror på land och vilken kultur de lever i. Slutsats: Anhörigvårdare har behov av mer stöd från sjuksköterskan i hemsjukvården och det palliativa teamet. Anhörigvårdare behöver kunskap om palliativ omvårdnad och prioritera sin egen hälsa i form av egenvård.

Bakgrund: Närstående i palliativ hemjukvård ökar förutsättningarna och möjliggör för patienten att vårdas och avlida i hemmet. Detta medför ett stort ansvar för närstående och kan påverka närståendes psykiska hälsa negativt. Interventioner syftar till att underlätta och stödja närstående. Sjuksköterskan har en ansvarsfull roll att fokusera på närståendes behov av stöd och förmågan varierar mellan sjuksköterskor. Att utföra strukturerade interventioner är ett sätt att systematisera. Syfte: Att beskriva interventioner och dess effekter med fokus på behov av stöd hos närstående som vårdar inom palliativ hemsjukvård. Metod: En allmän litteraturöversikt utfördes genom systematiskt tillvägagångssätt med induktiv ansats. Artiklarna analyserades och sammanställdes med tematisk analys avsedd för vetenskapliga artiklar med kvantitativ metod. Resultat: Resultatet presenteras i två teman med sex underteman, utifrån interventionernas utvärderade effekter. Samtliga interventioner fokuserar på behov av stöd hos närstående som vårdar inom palliativ hemsjukvård. Interventionseffekter som framkom gav närstående ökad kompetens, strategier och ökade förberedelser för att vårda. Effekter av interventionerna visade även minskad psykisk stress, ångest och depression, samt ökad livskvalitet. Slutsats: Resultatet indikerar att fokus på närståendes behov underlättar och ger stöd, vilket främjar närståendes psykiska hälsa. För att möta närståendes behov behövs strukturerade interventioner utföras systematiskt. Att implementera strukturerade interventioner är en roll för specialistsjuksköterska, som ska leda och utveckla den palliativa vården. / Background: In palliative home care, family caregivers enable and increase the chances of the patient being cared for and dying at home. This places a great responsibility on family caregivers and can have a negative impact on their mental health. The purpose of the interventions is to promote support needs of the family caregivers and facilate nursing care. The nurse has a responsible role in addressing the support needs of family members. The ability to address the needs varies between nurses and structured interventions are a way of systematizing. Aim: To describe interventions and their effects that focus on the need for support in family caregivers in palliative home care. Method: A general literature review was conducted systematically with an inductive approach. The articles were analyzed and synthesized using thematic analysis designed for a quantitative method. Result: The results are presented in two themes with six sub-themes, based on the evaluated effects of the interventions. All interventions focus on the support needs of family caregivers in palliative home care. Intervention effects shown provide family caregivers with increased skills, strategies, and preparation for caregiving. Intervention effects show reduced psychological stress, anxiety and depression, and increased quality of life. Conclusion: The results indicate that that support needs of family caregivers should be addressed in order to facilitate and provide support, which promotes family caregivers mental health. To meet the needs of family caregivers, structured interventions need to be carried out systematically. Implementing structured interventions is a role for the specialist nurse, who should lead and develop palliative care.

In recent years, healthcare has been shifting toward a people-centred vision. Within the intersection connecting service design and healthcare innovation, co-design communication tools are increasingly being used to bring the voice of patients and their families into healthcare co-creation activities. Existing documented use of such tools primarily focuses on empathy and how designers derive inspiration from participants’ materials, while little draws on the actual design process and how design attributes can effectively support patients and their families in generating and expressing their dreams. From this perspective, this thesis first analyses existing tools that aim to elicit participants’ self-expression and evoke their future-oriented thinking, which strategies for designing a tool that supports individuals in expressing their dreams are identified with a particular focus on materiality and visuality. Taking a research through design approach, this thesis enters into the extremely challenging rare disease context to design a toolkit to help family caregivers of people with ALS identify and convey their dreams for life after diagnosis. Through observations of participants’ interaction during the prototyping process, this study further demonstrates that considering both the vulnerability and intelligence of patients (families) in the design of tangible toolkits effectively breaks participants’ habitual perceptions and brings them to an imaginative space towards the future. In doing so, co-design tools commonly used in service design can be better adapted to the healthcare context. Additionally, the thesis provides family caregivers’ questions, insights, and ideas about ALS healthcare services, thereby informing the future ALS healthcare innovation.

No description available.

Purpose: Despite the wide usage of World Health Organization Disability Assessment Schedule II (WHODAS 2.0) in psychiatry research and clinical practice, there was limited knowledge on its proxy reliability among people with mental disorders. This paper aimed to compare the 12-item WHODAS 2.0 responses of adult patients with mental disorders to their family caregivers. Methods: In this study, 205 pairs of patients with mental disorders and primary family caregivers were consecutively recruited from one inpatient mental health department in a large hospital in China. All participants completed the 12-item version WHODAS 2.0 to assess patients’ functioning in the 30 days prior to the hospitalization. Measurement invariance, including configural, metric and scalar invariance, was tested across patient and proxy groups, using multi-group confirmatory factor analysis. Agreement between patients and proxies was examined by paired Wilcoxon tests and intraclass correlation coefficients (ICC). Subgroup analyses for proxy reliability were conducted within strata of proxy kinship and patient psychiatric diagnosis. Results: The 12-item WHODAS 2.0 achieved configural, metric and partial scalar invariance across patient and proxy groups. Unsatisfactory consistency was found for most items (ICC < 0.75, P < 0.05), especially for items on Cognition, Getting along, Life activities, and Participation in society (ICC < 0.4, P < 0.05). Spouses agreed with patients more often than parents (ICC ≥ 0.4, P < 0.05). The paired Wilcoxon tests found that impairment of patients with psychotic disorders tended to be overestimated by proxies while proxies tended to underestimate impairment of patients with mood disorders. Conclusion: Our study reveals inconsistency between self and proxy reports in the 12-item WHODAS 2.0 among adult patients with mental disorders. When proxy reports is needed, spouses are preferred than parents. We should be aware of proxies’ impairment overestimation among patients with psychotic disorders and underestimation among patients with mood disorders.