Background: Several patients wish to die at home and relatives often become thecaregivers. This task can be a burden and the opportunity for the patient to die at homecan be overshadowed by obligations and responsibilities. Participation of relatives isoften the prerequisite to offer palliative care in the home environment. The purpose: The purpose of the study was to illuminate relatives’ need of support during palliativecare in the home based care. Methods: A secondary qualitative data analysis wasconducted. Fourteen qualitative and quantitative studies were selected for secondarydata analysis. Results: This study has shown that relatives to palliative patients needemotional and instrumental support, information about the medical care giving and evenfinancial and legal counseling. There was also a need of support after the event of death;a need to be seen and to talk. Conclusion: It is important to listen and involve relativesin care giving. By basing the work on family focused care, the nurse can look at thewhole family, where relatives are important before and after the patient dying. Thisprovides nurses with opportunities to improve well being, quality of life for caregiversby ensuring care and support. / Bakgrund: Allt fler patienter önskar att dö hemma och anhöriga får oftast rollen somvårdare. Uppgiften kan kännas övermäktig och möjligheten för patienten att dö hemmakan överskuggas av krav och förpliktelser. Anhörigas delaktighet kan vara avgörandeför att den palliativa vården ska kunna bedrivas i hemmet. Syfte: Syftet med studien varatt belysa anhörigas behov av stöd inom palliativ vård i hemsjukvården. Metod: Allmänlitteraturstudie som bygger på fjorton kvalitativa och kvantitativa studier där anhörigaserfarenheter, upplevelser och behov granskades. Resultat: Studien visade att anhörigabehövde både emotionellt, instrumentellt stöd, information om den medicinska vårdensamt behov av finansiell- och juridisk rådgivning. Det fanns även ett behov av stöd efterdödsfallet; ett behov av att bli sedd och få prata. Slutsats: För att kunna skapa en braoch trygg vård för patienten och anhöriga är det viktigt att lyssna och delaktiggöraanhöriga i vården. Genom att arbeta utifrån familjefokuserad omvårdnad kandistriktssköterskan se till helheten, där anhöriga är lika viktiga både före och efterpatienten har avlidit. Detta kan ge distriktssköterskan möjlighet till att förbättraanhörigas livskvalitet samt ge vård och stöd.

Le but de cette étude est de cerner, à partir de leur propre point de vue, la trajectoire d’adaptation de conjoints dont l’épouse est atteinte d’un cancer de l’ovaire. Une approche qualitative, la théorisation ancrée, a été utilisée dans le cadre de cette recherche. Les données ont été recueillies à l’aide d'entretiens semi-structurés effectués auprès de neuf conjoints qui accompagnaient leur épouse lors de leurs traitements dans une unité montréalaise ultra-spécialisée de soins pour les cancers gynécologiques. Nos résultats font ressortir qu’une fois passé le choc de l’annonce du diagnostic, nos répondants se ressaisissent et élaborent toute une série de stratégies de protection pour leur épouse et eux-mêmes, puis d’attaque de la maladie. Au bilan, pour eux, le cancer se révèle une expérience « transformante» aux plans personnel, conjugal et social. Les contrastes observés entre nos résultats et ceux des études antérieures, qui insistent sur le désarroi de conjoints, peuvent être expliqués par la prise en charge efficace de la femme par le réseau de la santé, qui valorise le rôle du conjoint et qui l’outille pour accompagner son épouse. S’ajoutent à cela la force du lien conjugal, trempé par les épreuves passées, certains traits de personnalité des conjoints et l'action du réseau de soutien personnel. En regard de la pratique infirmière, notre recherche met en évidence le bien-fondé des politiques soutenant l’intégration des familles dans les plans de soins et les retombées positives d’une approche concertée entre tous les intervenants de la santé. Répéter une telle étude dans d'autres institutions du réseau de la santé permettrait de cerner encore plus finement son impact sur l’adaptation de conjoints à la maladie. / This research focuses on how nine men recall their adaptation trajectory to their spouses’ ovarian cancer. The qualitative analysis made use of the grounded theory approach; semistructured interviews were conducted with husbands accompanying their spouses during their treatments in an ultra-specialized unit for gynaecological cancers in a Montreal hospital. Our results show that after the initial shock initiated by the announcement, the respondents develop a set of strategies, first to protect their wives and themselves, and then to attack the illness. Accompanying their wives through the experience of cancer proves to be, for the husbands, a transformative experience at all levels: personal,conjugal, and social. The perceived efficacy of the health network and its preoccupation with the husband’s caretaker role may explain the sharp contrast we observe between results from the literature, insisting on the husbands’ helplessness in such a context, and our data, which underline their fighting spirit. Other factors identified are the strength of the conjugal link, forged in common ordeals, personality traits of both husbands and wives, and support from their personal network. Concerning nursing practice, this research suggests that the importance and the support given by the health professionals to the family caregivers is of utmost importance for the couple’s quality of life throughout this experience. Besides, the coordination of the health professionals, throughout the women’s illness, is crucial in diminishing the anxiety linked to the cancer diagnosis. The duplication of such a study in other cancer care units would allow a finer analysis of the impact the health network can have on the adaptation of both spouses to illness.

Backgrund: Cancer är en av Sveriges och världens vanligaste folksjukdomar. När sjukdomen inte längre går att bota övergår vården från kurativ till palliativ vård. En del av patienterna i livet slutskede väljer att vårdas i hemmet och detta utgör en känslig period för både patienten och närstående. Närstående och familjemedlemmar vårdar och utför omvårdnadsuppgifter som annars skulle utföras av vårdpersonal. För att kunna utföra vården har närstående och anhörigvårdare stor behov av stöd. Syfte: Att belysa närståendes behov av stöd, vid palliativ vård i livets slutskede i hemmet. Metod: En kvalitativ litteraturstudie med induktiv ansats. Resultat: Närstående och anhörigvårdare uttrycker behov av emotionellt stöd och brist på egen tid för återhämtning på grund av vårdarrollen. Att få information och undervisning om sjukdomen och sjukdomens symptom visade sig vara en viktig faktor som påverkade närståendes trygghetskänsla för att ge god palliativvård i hemmet. Slutsats: Studien visar att vårdarrollen kan vara en mycket påfrestande upplevelse med konsekvenser i form av ohälsa. Genom att ge stöd och utveckla en familjecentrerad palliativ vård kan sjukvårdspersonal minska närståendes sårbarhet och förebygga hälsa. Klinisk betydelse: Det är angeläget att främja sjuksköterskors medvetande om närståendes utsatthet och behov av stöd, för att vårdpersonalen lättare vägleda och stötta närstående. / Background: Cancer is one of Sweden's and the world's most common diseases. The ability to cure the disease has increased in recent years, but to cure the disease is not always possible. Caring force then changes to the palliative care with the aim of preventing and relieving suffering. Big part of cancer patients choose to receive palliative care in the home at the end of live and this is sensitive period for both patient and relatives. In order to provide the care have relatives and carers great need of support. Aim: Highlighting relatives need support, in palliative terminal care in the home. Method: A qualitative literature review with an inductive approach. Results: Family care givers experiences and express the need for emotional support and lack of time for recovery due to caring role. Gaining access to information and education about the disease and the symptoms of the disease appeared to be an important factor affecting closely related to confidence to provide good palliative care in the home. Conclusion: The study shows that caring role can be a very stressful experience with the consequences in the form of ill-health. By providing support and develop a family-centered palliative care can reduce health care professionals affiliated vulnerability and prevent health. Clinical significance: It is state to promote nurses awareness about relatives vulnerability and need for support. By mapping the various aspects of closely related experiences and needs can caregivers help guide and support related individually through the strenuous life situation.

The overall objective of the thesis was to investigate how older family caregivers in rural areas experienced participation in an e-health based caregiver support system. Participants were 95 caregivers allocated to intervention group (n=63) and control group (n=32). The thesis had a mixed method design and is based on four original articles (I-IV). Data was collected through web-camera interviews (I-III), telephone interviews (II,IV) and questionnaires (II,IV) after 1.5 years of using e-health support. Quantitative data was analyzed using comparative statistics, multiple linear regression and logistic regression. Qualitative data was analyzed with content analysis. Article I showed that the caregivers, despite lacking experience from using computers, were able to adopt the new technology, with help from support nurses and family. Caregivers felt e-health helped them to regain social inclusion. Article II had a comparative design, comparing e-health support with conventional caregiver support. Caregivers using e-health were more satisfied with their support and found it to be available, flexible and helping them enhance caregiver competence. Control group caregivers were less satisfied with support and experienced unmet needs. Article III showed that e-health can reduce caregivers’ feelings of isolation. Two themes were created, Expanding the concept of place and Developing networks. Article IV revealed that caregivers used e-health frequently, experienced benefits from using it and had become more independent. Support nurses were disappointed about the decrease in contact with caregivers, and also acknowledged a need for developing the professional nursing role while working with e-health. Conclusions drawn from the findings were that participants experienced benefits from e-health support and it helped them become more independent. Swedish municipalities are obliged to provide caregiver support, the findings from the study are valid to conclude that e-health support are as good as, or even more effective, than conventional support for older family caregivers in rural areas. / Det övergripande syftet vara att undersöka hur äldre anhörigvårdare på landsbygden upplevde att få anhörigstöd via en e-hälsa-tjänst. Avhandlingen hade en mixed method design och bestod av fyra originalarbeten (I-IV). Deltagare i studien var 95 personer, boendes i gles- och landsbygdsområden, som i det egna hemmet vårdade en make eller maka med kronisk sjukdom. Deltagarna var fördelade på interventionsgrupp (n=63) och kontrollgrupp (n=32). Datainsamling skedde efter 1.5 års användning av e-anhhörigstödet, genom web-kamera intervjuer (I-III), telefonintervjuer (II,IV) och frågeformulär (II,IV). Kvantitativa data analyserades genom komparativ statistik, multipel linjär regression och logistisk regression. Kvalitativa data analyserades med innehållsanalys. Artikel I visade att anhörigvårdarna, även om de inte hade någon vana av datorer sedan tidigare, kunde lära sig och bli användare av den teknik och utrustning som ingick i e-anhörigstödet, när de fick hjälp och stöd av anhörigstödjare eller andra. Anhörigvårdarna upplevde att e-anhörigstödet hjälpte dem att återfå social delaktighet. Artikel II hade en komparativ design och jämförde e-anhörigstöd med traditionellt anhörigstöd. De som använde e-anhörigstödet var nöjda med stödet i högre utsträckning än de som fick traditionellt stöd. E-anhörigstödet upplevdes som tillgänglig, flexibelt samt bidrog till att de utvecklade sin kompetens i vårdandet. Kontrollgruppen var mindre nöjd med sitt stöd samt upplevde att de hade behov som inte tillgodoseddes av stödet. Artikel III visade att e-anhörigstöd kan minska anhörigvårdares upplevelse av isolering, dels genom att de upplevde en känsla av att vara på andra platser fast de rent fysiskt befann sig i hemmet, dels genom att de utvecklade sociala nätverk. Artikel IV visade att anhörigvårdarna ofta använde e-anhörigstödet och att de upplevde nytta av att använda det. De blev också mer självständiga vilket ledde till färre kontakter med anhörigstödspersonalen. Personalen kände viss besvikelse över att kontakterna iv med anhöriga minskade och uttryckte att den professionella omvårdnads-rollen behöver utvecklas när e-hälsa införs och tillämpas i vård- och omsorgsarbete. Slutsatser som drogs från fynden i avhandlingen var att anhörigvårdarna hade stor nytta av att använda e-anhörigstöd samt att det hjälpte dem att bli mer självständiga, vilket reducerade deras behov av kontakt med kommunernas anhörigstöd. Sveriges kommuner har en skyldighet enligt lag att tillhandahålla anhörigstöd, med stöd av fynden från den här studien kan man dra slutsatsen att e-anhörigstöd kan fungera lika bra som, ibland till och med effektivare än, traditionellt anhörigstöd.

Substance abuse is a relapsing chronic illness. In 2014, an estimated 27 million persons reported using illicit drugs in the United States (SAMHSA, 2014). Substance abuse negatively impacts societies, productivity, healthcare costs and families. Families play an important role in relapse prevention and sobriety. With adequate family support, substance abuse positively responds to treatment. Many individuals (about 66 million Americans) play the role as an informal caregiver for a relative with chronic illnesses such as substance abuse but few studies exist on the caregiving experiences. What we know about the family caregiving experience is restricted to data from quantitative studies which do not explain the complexities and competing challenges that exist. Different approaches are thereby needed to deepen our understanding of the family caregiver burden of living with a relative with substance abuse problems. Such studies will enable us to understand the original experience and moment of learning of a relative’s substance abuse problems, decision making and support that follows thereafter. This moment calls for major decision making and encounter with treatment services. The purpose of this study was to explore the lived experience of caregivers of relatives with alcohol and opiate dependence. This study utilized Max van Manen’s (2014) Phenomenology of Practice. Ten participants (N=10) were recruited for this study. Van Manen’s guided existential inquiry was used in the analysis of experiential material collected through interviews. Four main themes emerged from the data: (1) Being in the moment: the extension of the self; (2) The dawn of reality: the being of acceptance; (3) Deciding in the moment: the healthcare experience; (4) Uncertainties and struggle: a lifelong process. These themes described how the participants: experienced, accepted and processed a relative’s substance abuse problem, encountered treatment services and experienced the uncertainties and struggles involved in caring for a relative with substance abuse problems. Two main findings emerged from these themes; the impact of guilt and stigma on seeking care and the need to see addiction as a disease instead of as a moral character failure. This calls for coalitions with stakeholders to decrease stigma, enhance acceptance process and increase access to treatment.

Atualmente no Brasil, crescem em importância os estudos sobre cuidados domiciliários à saúde de pessoas com perdas funcionais e dependência e seus cuidadores, em razão das transições demográfica e epidemiológica do país. Na Atenção Básica, com a implementação do Programa Saúde da Família (PSF), o cadastramento das famílias feito pelos agentes comunitários de saúde tornou visíveis as necessidades de saúde desses pacientes, antes confinados a seus lares, e de seus cuidadores. Este estudo teve como objetivo avaliar a qualidade de vida de cuidadores familiares de pacientes com perdas funcionais e dependência, atendidos por equipes de saúde da família, relacionando-a a características sociodemográficas, condições de saúde, grau de sobrecarga percebida e o grau de independência funcional do paciente. Foram entrevistados 66 cuidadores familiares atendidos por equipes de PSF na região sul do município de São Paulo. Os instrumentos utilizados foram: 1) caracterização do cuidador familiar e do paciente; 2) WHOQOL-bref, para avaliação de qualidade de vida subjetiva; 3) Zarit Burden Interview (ZBI), para avaliação da sobrecarga do cuidador, e 4) Escala de Medida de Independência Funcional (MIF), para avaliação da capacidade funcional dos pacientes. Os cuidadores eram, em sua maioria, mulheres (83,3%), casadas (62,2%) com média de idade de 50,5 anos. Na condição de filhas ou filhos (37,9%) e esposas ou esposos (24,2%), cuidavam de pacientes com até 50% de dependência para atividades básicas da vida diária (MIF total = 57,82) e estavam moderadamente sobrecarregados (Zarit total = 32,12). Apresentaram melhor escore de qualidade de vida no domínio físico (66,72) e pior no domínio meio ambiente (52,51). A escala de sobrecarga, a presença de companheiro e a presença de doença no cuidador mostraram-se estatisticamente relacionadas à ´qualidade e vida geral´, no modelo de regressão múltipla final. Os resultados permitiram concluir que a qualidade de vida do cuidador correlacionou-se estatisticamente à sobrecarga percebida, indicando que quanto menores os escores em todos os domínios do WHOQOL-bref, maior a sobrecarga. Não houve associação estatística significativa entre o grau de independência funcional e a qualidade de vida do cuidador. Políticas públicas efetivas, destinadas a oferecer uma rede de serviços de suporte às famílias de pessoas com perdas funcionais e dependência, são primordiais para a diminuição da sobrecarga do cuidador e conseqüente melhora da sua qualidade de vida e de seus familiares / In Brazil, the study of home health care of people with disabilities and dependency and their caregivers is growing in importance due to demographic and epidemiological changes in the country. With the introduction of the Family Health Program, the registration of families in Primary Care by community health agents brought to light the health needs of these patients, who were previously confined to their homes and to their caregivers. The objective of this study was to evaluate the quality of life of family caregivers of patients with disabilities and dependency, served by family healthcare teams, in terms of socio-demographic characteristics, health conditions, level of perceived burden and degree of functional independence of the patient. Family Health Care Program teams interviewed 66 family caregivers in the southern region of the city of São Paulo. The tools employed were: 1) characterization of the family caregiver and patient; 2) WHOQOL-bref, for the subjective evaluation of quality of life; 3) Zarit Burden Interview (ZBI), to evaluate caregiver burden, and 4) Functional Independence Measure Scale (FIM), to evaluate the functional capacity of patients. The caregivers were mostly women (83.3%), married (62.2%) with an average age of 50.5 years. Caregivers were daughters (37.9%) and spouses (24.2%), who cared for patients with up to 50% dependence for instrumental activities of daily living (MIF total = 57.82) and were moderately burdened (Zarit total = 32.12). The physical domain received the best quality of life score (66.72) and the worst score went to the environment domain (52.51). The amount of burden, presence of companion and presence of caregiver illness were statistically associated with general quality of life in the final multiple regression model. The results showed that caregiver quality of life is statistically correlated with perceived burden, indicating that the lower the score in all WHOQOL-bref domains, the higher the burden. No significant statistical association between degree of functional independence and caregiver quality of life was found. Effective public policies designed to offer a network of support services for families of people with dependence and functional loss are essential to reduce the burden placed on caregivers and consequently improve quality of life for them and their families

Submitted by Morgana Andrade (morgana.andrade@ufes.br) on 2017-09-22T21:30:38Z No. of bitstreams: 2 license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) OTIMISMO, COPING E GANHO PERCEBIDO EM CUIDADORES DE CRIANÇAS COM CÂNCER (1).pdf: 1457980 bytes, checksum: 235bda3f561aa8f252320cc12ea2df50 (MD5) / Approved for entry into archive by Morgana Andrade (morgana.andrade@ufes.br) on 2017-10-03T16:05:32Z (GMT) No. of bitstreams: 2 license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) OTIMISMO, COPING E GANHO PERCEBIDO EM CUIDADORES DE CRIANÇAS COM CÂNCER (1).pdf: 1457980 bytes, checksum: 235bda3f561aa8f252320cc12ea2df50 (MD5) / Made available in DSpace on 2017-10-03T16:05:32Z (GMT). No. of bitstreams: 2 license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) OTIMISMO, COPING E GANHO PERCEBIDO EM CUIDADORES DE CRIANÇAS COM CÂNCER (1).pdf: 1457980 bytes, checksum: 235bda3f561aa8f252320cc12ea2df50 (MD5) / FAPES / O câncer infantil é considerado um estressor potencial não apenas para a criança, mas também para seus familiares. Para lidar com a doença do filho, pais e/ou cuidadores precisam empregar estratégias de coping que protejam o ajustamento familiar. Nesse contexto, atributos pessoais positivos, como o otimismo, podem contribuir para um coping mais adaptativo, de modo que seja possível perceber ganho na adversidade. Com o objetivo de analisar as relações entre otimismo, coping e ganho percebido em cuidadores de crianças com câncer, participaram 60 cuidadores principais que estavam acompanhando seus filhos em tratamento, em um hospital de referência da Grande Vitória, ES. Após o consentimento para participação na pesquisa, os participantes responderam os instrumentos sobre: otimismo (Teste de Orientação da Vida - TOV-R); coping (Escala de Coping); e ganho percebido (Inventário de Desenvolvimento Pós-Traumático). Variáveis sociodemográficas e clínicas, medidas por meio do Questionário sociodemográfico e do Protocolo de registro das características clínicas da criança, também foram obtidas. Os dados referentes aos instrumentos padronizados obedeceram aos critérios normativos estabelecidos e foram submetidos à análise estatística descritiva e à análise estatística inferencial para verificar a relação entre variáveis. Em relação ao otimismo, verificou-se que a maior parte dos cuidadores referiu uma percepção otimista da vida. A análise do coping mostrou que categorias de coping de alta ordem adaptativas obtiveram a maior média quando comparadas com categorias mal adaptativas, com destaque para resolução de problemas. Verificou-se que na adversidade de ter um filho com câncer, os cuidadores referiram ganho percebido, especialmente, no domínio do desenvolvimento espiritual. Foram encontradas relações entre: otimismo e coping (cuidadores mais otimistas 11 referiram menos submissão e menos estratégias das categorias de coping de alta ordem mal adaptativas); otimismo e ganho percebido (cuidadores com uma orientação otimista de vida perceberam mais recursos e competências pessoais); coping e ganho percebido (cuidadores que referiram mais busca de suporte e menos autoconfiança, desamparo e estratégias não adaptativas, perceberam maior fortalecimento das relações interpessoais; e cuidadores que se perceberam mais competentes, referiram menos autoconfiança, mas maior desenvolvimento espiritual). Variáveis clínicas da criança e estado civil dos cuidadores também se relacionaram com otimismo, coping e ganho percebido: cuidadores casados perceberam maior ganho, especialmente, no fortalecimento das relações interpessoais; cuidadores de crianças com tumores sólidos referiram mais resolução de problemas e negociação; cuidadores de crianças com diagnóstico de linfoma referiram mais delegação e oposição; cuidadores de crianças fora de quimioterapia referiram mais competência, delegação, e maior ganho percebido; e cuidadores cujos filhos tinham mais tempo de tratamento, se mostraram mais otimistas e referiram menos tristeza, mais competência para lidar com o estressor, mais vontade de estar longe do mesmo e maior ganho percebido. Intervenções com cuidadores de crianças com câncer devem ser pensadas de forma a favorecer um coping adaptativo, valorizando características individuais que possam auxiliar este processo, de modo a permitir uma ressignificação da experiência de ter um filho com câncer e o crescimento em meio à adversidade. / Child cancer is considered a potential stressor not only for children, but also for their family members. To cope with the disease of the child, parents and / or caregivers need to use coping strategies that will protect family adjustment. In this context, positive personal attributes, like optimism, can contribute to a more adaptive coping, so that it is possible to notice some benefits in adversity. In order to analyze the relationship between optimism, coping and benefit finding in caregivers of children with cancer, 60 main caregivers who were accompanying their children in treatment, at a referral hospital in Grande Vitória, ES attended. After the permission to participate in the study, participants answered the instruments on: optimism (Life Orientation Test - LOT-R); coping (Coping Scale); and benefit finding (Posttraumatic Growth Inventory). Socio-demographic and clinical variables, as determined by the Socio-demographic Questionnaire and Registration Protocol of the clinical characteristics of the child, were also obtained. The data relating to standardized instruments met the established normative criteria and were submitted to the analysis of the descriptive and inferential statistics to verify the relationship between variables. Regarding optimism, it was found that most caregivers reported an optimistic view of life. The coping analysis showed that coping categories of higher adaptive order obtained the highest average when compared to maladaptive categories, with emphasis on problem solving. It was found that the adversity of having a child with cancer, caregivers reported perceived benefits, especially in the field of spiritual development. There were relationships between: optimism and coping (more optimistic caregivers reported less submission and less strategies of coping categories of high maladaptive order); optimism and benefit finding (caregivers with an 13 optimistic life orientation realized more resources and personal skills); coping and benefit finding (caregivers who reported more search for support and less self-reliance, helplessness and maladaptive strategies, noticed greater strengthening of interpersonal relationships); and caregivers who found themselves more competent, reported less self-reliance, but higher spiritual development. The child’s clinical variables and marital status of caregivers also related with optimism, coping and benefit finding: married caregivers noticed greater gain, especially in the strengthening of interpersonal relationships; caregivers of children with solid tumors reported more problem solving and negotiation; caregivers of children diagnosed with lymphoma reported more delegation and opposition; caregivers of children out of chemotherapy reported more competence, delegation, and greater benefit finding; and caregivers whose children had a longer time treatment, were more optimistic and reported less anxiety, more power to deal with the stressor, more willing to be away from it and greater benefit finding. Interventions with caregivers of children with cancer should be thought to favor an adaptive coping, valuing individual characteristics that can assist this process, in order to allow for a reinterpretation of the experience of having a child with cancer and growth through adversity.

Submitted by Cássia Santos (cassia.bcufg@gmail.com) on 2016-09-05T13:19:55Z No. of bitstreams: 2 Dissertação - Juliana Caldas de Souza - 2013.pdf: 2562448 bytes, checksum: e92ca76b4dd1d37016a63f0786f538e7 (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Approved for entry into archive by Luciana Ferreira (lucgeral@gmail.com) on 2016-09-05T13:21:06Z (GMT) No. of bitstreams: 2 Dissertação - Juliana Caldas de Souza - 2013.pdf: 2562448 bytes, checksum: e92ca76b4dd1d37016a63f0786f538e7 (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) / Made available in DSpace on 2016-09-05T13:21:07Z (GMT). No. of bitstreams: 2 Dissertação - Juliana Caldas de Souza - 2013.pdf: 2562448 bytes, checksum: e92ca76b4dd1d37016a63f0786f538e7 (MD5) license_rdf: 0 bytes, checksum: d41d8cd98f00b204e9800998ecf8427e (MD5) Previous issue date: 2013-05-10 / Traumatic brain injury (TBI) has been considered the most important cause of disability among young people and the most common cause of neurological morbidity. It is therefore necessary that health professionals, including nurses, develop specific knowledge about the assistance not only to the victims but also to the caregivers in order to help them cope with the adverse consequences arising from this type of trauma. In the rehabilitation context, there is little research on the clinical management of people with TBI in rehabilitation process and even the use of Models or Nursing Theories to approach to this group. This study aimed to examine the effectiveness of a program in nursing interventions for "Knowledge deficit of family caregivers" of people with TBI rehabilitation sequel. It followed the methodology of convergent care research (PCA), a quantitative approach. The study was developed in the hospital sector of the Rehabilitation Center and Readaptation Dr. Henry Santillo (CRER) in the city of Goiânia/GO through August 2012 to January 2013. The study included eight people with TBI, V ranch or superior, who were hospitalized in the period of the study and their caregivers. During data collection a set of instruments and procedures were used. In the evaluation of people with TBI, a protocol interview and physical examination based on the Theory of Orem were used. In the assessment of family caregivers it was applied a structured interview based on the Calgary Assessment Model and Families Intervention, a cognitic assessment using the Mini-Mental State Examination and anxiety assessment by the State-Trait Anxiety Inventory. Based on this initial assessment of patients and their family caregivers, it was developed knowledge evaluation protocols necessary to caregivers with specific focus such as: facilitation of communication, memory training, cognitive stimulation and disease process. The rating scales were inspired by NOC. Then, a program of individual and group intervention was applied to the family caregivers based on NIC (individual and group learning, learning: the health illness process) and in the Learning Theory significant. At the end of the specific intervention program, 72 hours were waited and knowledge post-intervention tests were applied. Sociodemographic data analysis was done by simple descriptive statistics. The diagnoses were identified by consensus of two professionals and checked by a third researcher. To evaluate the results it was used the scores of the NOC indicators (Nursing Outcomes Classifications) and made a comparison of the data obtained before and after 72 hours of interventions through the use of Descartes signals test. The interventions protocol for poor knowledge was effective for training Memory (p = 0.008) and instruction: disease process (p = 0.008). Despite positive clinically results, the program effectiveness of interventions for cognitive stimulation (p = 0.07) and communication improvement (p = 0.12) they could not be statistically proven. Based on these results, it was possible to: highlight the success of intervention program for the diagnosis of insufficient knowledge of the family caregiver training on memory and on the disease process. / O trauma cranioencefálico (TCE) tem sido considerado a causa mais importante de incapacidade entre jovens e a mais frequente causa neurológica de morbidade. Assim, é necessário que profissionais da saúde, incluindo a enfermagem, desenvolvam conhecimento específico sobre a assistência não só das vítimas, como também dos cuidadores, a fim de ajudá-los a enfrentar as consequências oriundas desse tipo de trauma. No contexto da reabilitação, são escassas as pesquisas sobre a abordagem clínica de pessoas com TCE em processo de reabilitação e a utilização de Modelos ou Teorias de Enfermagem para abordagem desse grupo. Este estudo teve por objetivo analisar a efetividade de um programa de intervenções de enfermagem para “Déficit de conhecimento do familiar cuidador” de pessoas com sequela de TCE em reabilitação. Seguiu-se a metodologia de pesquisa convergente assistencial (PCA), de abordagem quantitativa. O estudo foi desenvolvido no setor de internação do Centro de Reabilitação e Readaptação Dr. Henrique Santillo (CRER), na cidade de Goiânia/GO, no período de agosto de 2012 a janeiro de 2013. Foram incluídas oito pessoas com TCE, rancho V ou superior, que estiveram internadas no período de realização do estudo e seus respectivos cuidadores. Na coleta de dados utilizaram-se um conjunto de instrumentos e procedimentos: na avaliação das pessoas com TCE foi utilizado um protocolo de entrevista e exame físico baseado na Teoria de Orem. Na avaliação dos cuidadores familiares foi aplicado um roteiro de entrevista fundamentado no Modelo Calgary de Avaliação e Intervenção de Famílias, avaliação cognitiva por meio do Mini-Exame do Estado Mental e avaliação da ansiedade mediante o Inventario da Ansiedade Traço-Estado. Com base nessa avaliação inicial dos pacientes e seus familiares cuidadores, elaboramos protocolos de avaliação de conhecimento necessários aos cuidadores com foco específico como: facilitação da comunicação, treino da memória, estimulação cognitiva e o processo de doença. As escalas de avaliação foram inspiradas na NOC. Foi aplicado um programa de intervenção individual e grupal, aos familiares cuidadores, baseado na NIC (ensino individual e ensino grupal, ensino: processo saúde doença) utilizando a Teoria de Aprendizagem significativa. Ao término do programa de intervenção específico, foram aguardados 72h e aplicados os testes de conhecimento pós-intervenção. A análise dos dados sociodemográficos foi realizada mediante estatística descritiva simples. Os diagnósticos foram identificados por consenso de dois profissionais e checagem por um terceiro pesquisador. Para avaliação dos resultados foram utilizados os escores dos indicadores da NOC (Nursing Outcomes Classifications) e realizada a comparação dos dados obtidos antes e após 72 horas das intervenções mediante o uso do teste de Sinais de Descartes. O protocolo de intervenções para o conhecimento deficiente mostrou-se efetivo para treino de Memória (p=0,008) e ensino: processo de Doença (p=0,008). Apesar de resultados positivos clinicamente, a efetividade do programa de intervenções para estimulação cognitiva (p=0,07) e melhora da comunicação (p=0,12) não puderam ser comprovados estatisticamente. Com base nos resultados encontrados, foi possível: evidenciar o êxito do programa de intervenção para os diagnósticos de conhecimento deficiente do familiar cuidador sobre treino de memória e sobre processo de doença.

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The aging Canadian population is becoming increasingly ethno-culturally diverse primarily due to immigration. This, together with research indicating increased likelihood of long-term residential care (LTRC) use at older ages and challenges in providing these services, prompt important questions about whether LTRC services are prepared to provide culturally responsive and competent care to immigrant and ethno-cultural minority older adults (EMOA). This ethnographic study, informed by a critical theoretical perspective, explored these questions from the perspectives of South Asian older adults (SAOAs) and their family caregivers (FCGs). In-depth interviews with 18 SAOAs in LTRC, assisted living and those at home, their FCGs, and seven key informants from LTRC and the South Asian (SA) community (n=43) were undertaken. These interviews, in addition to 220 hours of participant observation in two LTRC facilities, provided information regarding the needs, preferences, experiences and situation of SAOAs in LTRC as well as how SA families make decisions regarding the use of such services. A select review of provincial policy, residential care regulation, health authority and facility documents, exposed taken-for-granted assumptions in how care and services are provided and the sociopolitical context of LTRC provision. Study findings suggest that LTRC services are challenged to meet the needs of immigrant and EMOA and reflect unequal and inequitable care, illuminated by the differential impact of macro-policies and resource-constrained LTRC environments on SAOAs and their families and on the ability of existing LTRC services to provide person-centred care. This inequity in service provision has implications for immigrant and EMOA and their family members in light of findings that the decision to move to LTRC is essentially a (non) decision influenced by a range of social structural factors that interact to necessitate the move to LTRC. Study findings revealed the salience of socio-economic status and economic resources in particular, in the (non) decision for LTRC placement. The findings from this study along with demographic shifts in the aging Canadian population call for LTRC service providers and policy makers to actively prepare for increasing ethno-culturally diverse resident populations and point to the need for equity informed approaches to the care of older adults. / Graduate / 2022-03-31