Ser cuidador de paciente com acidente vascular cerebral: histórias não contadas

The present study aimed to understand the experience of being a family caregiver of a patient with Cerebrovascular Accident (CVA). The relevance of the study is to prove existence of a large number of caregivers of incapacitated patients, due to the CVA and it is not an academic research object, according to the literature. It is a qualitative research, which the guiding principle is the oral history of life, according to the theoretical foundation and operating of Meihy. Therefore, the following steps were highlighted: the target community, composed of all family caregivers of CVA patients; the colony, composed by family caregivers of CVA patients assisted by Home Care Service (HCS) of the Hospital José Pedro Bezerra (HJPB), in the city of Natal/RN; the network was composed of six caregivers who met the criteria for inclusion, and as zero point the first volunteer group. The population was composed of all family caregivers of patients attended by the HCS, of the HJPB having been addressed through interviews. For the empirical research there was the consent of that institution and approval by the Ethics Committee in Research of the Federal University of Rio Grande do Norte as CAAE 24569413.0.0000.5537 and, above all, with the acquiescence of employees in participating in the investigation, signing an informed consent. Of the empirical material, five categories of analysis were identified: the sense of being a caregiver; what has changed in the life of the caregiver; the feelings emerge in the relationship of care; the distance from family and friends; difficulties faced by the caregiver. The results show that the caregiver's life goes through profound transformations within the family as well as in all spheres of life. For the caregivers, assuming the care of a relative with CVA means renunciation and donation, compromising sometimes the individual projects and the family as a whole. In addition, they point out the confrontation of difficulties within the the assistance and humanization in healthcare, information, physical and emotional overload, as well as financial problems. Despite all the adversities that compromise the caregiver's life, it was possible to identify attitudes of resilience among caregivers, making them their daily life less strenuous and with more lightness. It is expected, therefore, that this research can contribute to a better orientation of professionals with the caregivers

Concepções de mulheres com deficiência física sobre a maternidade

The study aimed to understand the concept of women with physical disabilities about their ability to gestate, give birth or care a child. This is an exploratory, descriptive study with qualitative approach developed in three non-governmental organizations in Natal, Rio Grande do Norte, Brazil. The data collection occurred in the period from April to June, 2014, through semi-structured interviews, using a script composed by sociodemographic questions and a guiding one. It was obtained a priori the permission from the association’s directors, the approval from the Research Ethics Committee, of the Federal University of Rio Grande do Norte, CAAE nº 27442814.7.0000.5537 and the assent n° 618.045, as well as the participant’s formal authorization by signing the Informed Consent Statement. Participated in the study 12 women, selected according to the following inclusion criteria: to have physical disability, to be aged 18 to 49 years old, and to affirm the existence of limiting characteristics from early childhood (0-3 years). The information obtained in the interviews were subjected to the precepts of Content Analysis according to Bardin, under the thematic analysis technique. From this process, three categories emerged: Conceiving motherhood in front of disability; Conceiving the capacity to be mother with disability; and Conceiving the support during pregnancy and puerperium period. As the theoretical framework we adopted the principles of symbolic interactionism proposed by Blumer. The discussion was supported by literature findings on women's health care in the context of reproduction. The interviewees conceive motherhood as an accomplishment and believe in their own ability to gestate, give birth and care a child. However, the desire for the maternal role tends to be influenced by adverse feelings and limitations raised by disability, social barriers and prejudices. They also referred the importance of support from partner, family and health professionals in the care of child. Upon these findings, it is understood that although there are barriers to the realization of their desire, these barriers were not enough to make them give up on becoming a mother. Therefore, it is necessary that health professionals, highlighted the nurse, be trained to care for women with disabilities in the context of reproductive health care in order to offer adequate support to their needs

Trajetória de pessoas com AIDS em situação de vulnerabilidade social: à luz da história oral de vida

The epidemic caused by HIV presents a global, dynamic and unstable phenomenon, which depends on the individual and collective human behavior. Efforts to deconstruct the stigmatized image caused by infection of AIDS are still often associated with adoption of socially unacceptable behavior to be a circumscribed the susceptibilities of vulnerable individuals and communities to infection, illness and death by HIV. This study aimed to: narrate the trajectory of life of people with AIDS more vulnerable enrolled in the Municipal Social Assistance Parnamirim / RN. It is a study of qualitative, exploratory and descriptive approach, taking oral history of life as technical and methodological framework. The colony consisted of 186 people with AIDS. The network was comprised of 13 employees of both sexes, aged between 19 and 62 years old with positive diagnosis and agreed to voluntarily participate. After approval by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), in the opinion No. 719,926 CAAE: 30408114.5.0000.5537 on 6 June 2014 data were collected from August to September 2014. The employees signed the Informed Consent and Informed and letter of assignment. Held transcribing the interviews and later returned to respondents to retest, ie so that they confer what allowed us to carry out transcreation after consecutive readings. The reports were analyzed through Bardin content analysis. Guiding the analysis of the accounts of employees, we find three themes: Prejudice and discrimination in living with AIDS; Reacting to the diagnosis and the accession process to antiretroviral treatment; and religious coping in people with AIDS. It can be concluded in this study, that employees have shown great emotional impact after positive diagnosis for HIV / AIDS, especially with regard to social life, the family ties, work and above all to the prejudice of society. Treatment with antiretroviral drugs was seen as a motivation to regain dreams and plans for a future once uncertain, and even if it is not a cure therapy, provided the employees improved quality of life.

Trajetória de pessoas com AIDS em situação de vulnerabilidade social: à luz da história oral de vida

The epidemic caused by HIV presents a global, dynamic and unstable phenomenon, which depends on the individual and collective human behavior. Efforts to deconstruct the stigmatized image caused by infection of AIDS are still often associated with adoption of socially unacceptable behavior to be a circumscribed the susceptibilities of vulnerable individuals and communities to infection, illness and death by HIV. This study aimed to: narrate the trajectory of life of people with AIDS more vulnerable enrolled in the Municipal Social Assistance Parnamirim / RN. It is a study of qualitative, exploratory and descriptive approach, taking oral history of life as technical and methodological framework. The colony consisted of 186 people with AIDS. The network was comprised of 13 employees of both sexes, aged between 19 and 62 years old with positive diagnosis and agreed to voluntarily participate. After approval by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), in the opinion No. 719,926 CAAE: 30408114.5.0000.5537 on 6 June 2014 data were collected from August to September 2014. The employees signed the Informed Consent and Informed and letter of assignment. Held transcribing the interviews and later returned to respondents to retest, ie so that they confer what allowed us to carry out transcreation after consecutive readings. The reports were analyzed through Bardin content analysis. Guiding the analysis of the accounts of employees, we find three themes: Prejudice and discrimination in living with AIDS; Reacting to the diagnosis and the accession process to antiretroviral treatment; and religious coping in people with AIDS. It can be concluded in this study, that employees have shown great emotional impact after positive diagnosis for HIV / AIDS, especially with regard to social life, the family ties, work and above all to the prejudice of society. Treatment with antiretroviral drugs was seen as a motivation to regain dreams and plans for a future once uncertain, and even if it is not a cure therapy, provided the employees improved quality of life.

Impact on quality of life of removable partial denture wearers after 2 years of use

The use of clinical indicators of satisfaction (OHIP) can be applied to evaluate the impact of denture use on patient quality of life, since dental problems and disorders interfere in the normal life of individuals. Aim: This study aimed at evaluating the satisfaction level of patients rehabilitated with removable partial dentures (RPD) after 2 years of use. Methods: An observational study was carried out on 28 patients with a mean age of 45 years, treated with RPD at the Department of Dentistry of the Federal University of Rio Grande do Norte in 2005. Patients signed informed consent and answered the Oral Health Impact Profile (OHIP) questionnaire on three occasions: prior to rehabilitation and at 3 months and 2 years of denture use. Repeated-measures ANOVA was applied for data analysis. Results: A difference was found between data obtained at the moment of fitting and three months after denture use (p<0.001). However, no variation was observed when comparing data from 3 months and 2 years of use (p>0.05). The variables of gender and age did not interfere in the result (p>0.05). Conclusions: The degree of patient satisfaction after RPD installation was significant at the moment of fitting and 3 months after denture use, but no significant difference was found between 3 months and 2 years of denture use.

Impact on quality of life of removable partial denture wearers after 2 years of use

The use of clinical indicators of satisfaction (OHIP) can be applied to evaluate the impact of denture use on patient quality of life, since dental problems and disorders interfere in the normal life of individuals. Aim: This study aimed at evaluating the satisfaction level of patients rehabilitated with removable partial dentures (RPD) after 2 years of use. Methods: An observational study was carried out on 28 patients with a mean age of 45 years, treated with RPD at the Department of Dentistry of the Federal University of Rio Grande do Norte in 2005. Patients signed informed consent and answered the Oral Health Impact Profile (OHIP) questionnaire on three occasions: prior to rehabilitation and at 3 months and 2 years of denture use. Repeated-measures ANOVA was applied for data analysis. Results: A difference was found between data obtained at the moment of fitting and three months after denture use (p<0.001). However, no variation was observed when comparing data from 3 months and 2 years of use (p>0.05). The variables of gender and age did not interfere in the result (p>0.05). Conclusions: The degree of patient satisfaction after RPD installation was significant at the moment of fitting and 3 months after denture use, but no significant difference was found between 3 months and 2 years of denture use.

Doing Research with Vulnerable Populations: The Case of Intravenous Drug Users

Article

Referring heroin users from compulsory detoxification centers to community methadone maintenance treatment: a comparison of three models.

BACKGROUND: Both compulsory detoxification treatment and community-based methadone maintenance treatment (MMT) exist for heroin addicts in China. We aim to examine the effectiveness of three intervention models for referring heroin addicts released from compulsory detoxification centers to community methadone maintenance treatment (MMT) clinics in Dehong prefecture, Yunnan province, China. METHODS: Using a quasi-experimental study design, three different referral models were assigned to four detoxification centers. Heroin addicts were enrolled based on their fulfillment to eligibility criteria and provision of informed consent. Two months prior to their release, information on demographic characteristics, history of heroin use, and prior participation in intervention programs was collected via a survey, and blood samples were obtained for HIV testing. All subjects were followed for six months after release from detoxification centers. Multi-level logistic regression analysis was used to examine factors predicting successful referrals to MMT clinics. RESULTS: Of the 226 participants who were released and followed, 9.7% were successfully referred to MMT(16.2% of HIV-positive participants and 7.0% of HIV-negative participants). A higher proportion of successful referrals was observed among participants who received both referral cards and MMT treatment while still in detoxification centers (25.8%) as compared to those who received both referral cards and police-assisted MMT enrollment (5.4%) and those who received referral cards only (0%). Furthermore, those who received referral cards and MMT treatment while still in detoxification had increased odds of successful referral to an MMT clinic (adjusted OR = 1.2, CI = 1.1-1.3). Having participated in an MMT program prior to detention (OR = 1.5, CI = 1.3-1.6) was the only baseline covariate associated with increased odds of successful referral. CONCLUSION: Findings suggest that providing MMT within detoxification centers promotes successful referral of heroin addicts to community-based MMT upon their release.

End-of-life care: identifying an appropriate legal framework for specialist palliative care in Ireland

This thesis argues that the legal framework in Ireland for specialist palliative care is inadequate and consequently a more appropriate legal framework must be identified. This research is guided by three central research questions. The first central research question examines the legitimacy of the distinction between specialist palliative care and euthanasia. The second central research question asks what legal framework currently exists in Ireland for specialist palliative care. The third central research question examines an alternative legal framework for specialist palliative. This thesis is composed of seven chapters. The first Chapter is an introduction to the thesis and defines the terminology and the central research questions. Chapter Two explores the development and practice of palliative care in Ireland. Chapter Three examines the distinction in criminal law between specialist palliative care practices and euthanasia. Chapter Four examines the human rights framework for specialist palliative care. Chapter Five critiques the regulatory framework in Ireland for specialist palliative care. Having gained a thorough understanding of palliative care and the related legal framework, this thesis then engages in comparative analysis of the Netherlands which is used as a source of ideas for reform in Ireland. Chapter Seven is the concluding chapter and, in it, the main findings of this thesis are summarised. The main findings being that: the distinction between specialist palliative care and euthanasia is not sufficiently supported by justifications such as a double effect or the acts and omissions distinction, there is no clear decision-making framework in Ireland for specialist palliative care, and the current legal framework lacks clarity and does not promote consistency between providers of specialist palliative care. This Chapter also proposes that detailed professional standards and guidelines are likely to be the most appropriate way to effect individual and institutional change in the provision of specialist palliative care.

Perioperative cerebrospinal fluid and plasma inflammatory markers after orthopedic surgery.

BACKGROUND: Postoperative delirium is prevalent in older patients and associated with worse outcomes. Recent data in animal studies demonstrate increases in inflammatory markers in plasma and cerebrospinal fluid (CSF) even after aseptic surgery, suggesting that inflammation of the central nervous system may be part of the pathogenesis of postoperative cognitive changes. We investigated the hypothesis that neuroinflammation was an important cause for postoperative delirium and cognitive dysfunction after major non-cardiac surgery. METHODS: After Institutional Review Board approval and informed consent, we recruited patients undergoing major knee surgery who received spinal anesthesia and femoral nerve block with intravenous sedation. All patients had an indwelling spinal catheter placed at the time of spinal anesthesia that was left in place for up to 24 h. Plasma and CSF samples were collected preoperatively and at 3, 6, and 18 h postoperatively. Cytokine levels were measured using ELISA and Luminex. Postoperative delirium was determined using the confusion assessment method, and cognitive dysfunction was measured using validated cognitive tests (word list, verbal fluency test, digit symbol test). RESULTS: Ten patients with complete datasets were included. One patient developed postoperative delirium, and six patients developed postoperative cognitive dysfunction. Postoperatively, at different time points, statistically significant changes compared to baseline were present in IL-5, IL-6, I-8, IL-10, monocyte chemotactic protein (MCP)-1, macrophage inflammatory protein (MIP)-1α, IL-6/IL-10, and receptor for advanced glycation end products in plasma and in IFN-γ, IL-6, IL-8, IL-10, MCP-1, MIP-1α, MIP-1β, IL-8/IL-10, and TNF-α in CSF. CONCLUSIONS: Substantial pro- and anti-inflammatory activity in the central neural system after surgery was found. If confirmed by larger studies, persistent changes in cytokine levels may serve as biomarkers for novel clinical trials.

Postoperative analgesic effect, of preoperatively administered dexamethasone, after operative fixation of fractured neck of femur: randomised, double blinded controlled study.

Background: Fractured neck of femur is a common cause of hospital admission in the elderly and usually requires operative fixation. In a variety of clinical settings, preoperative glucocorticoid administration has improved analgesia and decreased opioid consumption. Our objective was to define the postoperative analgesic efficacy of single dose of dexamethasone administered preoperatively in patients undergoing operative fixation of fractured neck of femur. Methods: Institutional ethical approval was granted and written informed consent was obtained from each patient. Patients awaiting for surgery at Cork University Hospital were recruited between July 2009 and August 2012. Participating patients, scheduled for surgery were randomly allocated to one of two groups (Dexamethasone or Placebo). Patients in the dexamethasone group received a single dose of intravenous dexamethasone 0.1 mg kg -1 immediately preoperatively. Patients in the placebo group received the same volume of normal saline. Patients underwent operative fixation of fractured neck of femur using standardised spinal anaesthesia and surgical techniques. The primary outcome was pain scores at rest 6 h after the surgery. Results: Thirty seven patients were recruited and data from thirty patients were analysed. The groups were similar in terms of patient characteristics. Pain scores at rest 6 h after the surgery (the principal outcome) were lesser in the dexamethasone group compared with the placebo group [0.8(1.3) vs. 3.9(2.9), mean(SD) p = 0.0004]. Cumulative morphine consumption 24 h after the surgery was also lesser in the dexamethasone group [7.7(8.3) vs. 15.1(9.4), mean(SD) mg, p = 0.04]. Conclusions: A single dose of intravenous dexamethasone 0.1 mg kg -1 administered before operative fixation of fractured neck of femur improve significantly the early postoperative analgesia. Trial registration: ClinicalTrials.gov identifier: NCT01550146, date of registration: 07/03/2012

Doing Research with Vulnerable Populations: The Case of Intravenous Drug Users

Article

Estudo Preliminar das Propriedades Psicométricas do Inventário de Lateralidade de Edinburgh numa Amostra de Adultos da População Portuguesa

Introdução: A lateralidade é a diferença na capacidade de controlo entre os dois lados do corpo. Os métodos utilizados para avaliar a lateralidade manual incluem a observação efetiva do uso do membro dominante ou a aplicação de inventários respondidos pelo próprio indivíduo avaliado. O Inventário de Lateralidade de Edinburgh (EHI) é o instrumento mais utilizado para avaliar a lateralidade manual. Apesar do seu uso amplo, em Portugal não existem estudos que avaliem a sua validade e fidedignidade. Objetivos: Estudar as propriedades psicométricas do Inventário de Lateralidade de Edinburgh numa amostra da população portuguesa. Métodos: A amostra é constituída por 290 pessoas (135 homens e 155 mulheres), com idades compreendidas entre os 18 e os 65 anos. Todos os participantes preencheram uma declaração de consentimento informado e uma bateria de testes neuropsicológicos Resultados: A média no EHI foi de 62,36 (DP = 38,00). Os resultados demonstraram que das seis variáveis sociodemográficas (idade, sexo, escolaridade, zona de residência, regiões e profissão) três apresentaram ter influência significativa nas pontuações do EHI: idade, zona de residência e regiões. A confiabilidade e a estabilidade temporal do EHI apresentaram resultados adequados. A análise fatorial confirmatória mostrou que o modelo não é melhor explicado por um fator. Para dois fatores o modelo continua a não ser adequado. Conclusão: Apesar de termos obtido uma boa consistência interna não nos é possível considerar este teste como o mais adequado para medir o constructo da lateralidade. / Introduction: The handedness is the difference in the control capacity between the two sides of the body. The methods used to evaluate the manual handedness include the effective observation of the use of dominant member or application of inventories answered by the person assessed. The Edinburgh Handedness Inventory (EHI) is the most used to evaluate manual handedness. Even though being widely used, in Portugal there are no studies that measure its validity and reliability. Objective: To study the psychometric properties of Edinburgh Handedness Inventory in a Portuguese sample. Methods: The sample consists of 290 people (135 men and 155 women), aged between 18 and 65 years. All participants filled an informed consent form and a battery of neuropsychological tests. Results: The average in EHI was 62.36 (SD = 38.00). The results showed that 3 of 6 sociodemographic variables showed significant influence in EHI scores. The reliability and temporal stability of EHI were adequate. Confirmatory factor analysis showed that the model is not better explained by one factor. A two-factor model was not also suitable. Conclusion: Even though we got a good internal consistency we cannot consider this test as the most appropriate for measuring the handedness construct.

Resiliência, Coping e Autocompaixão em Cuidadores Formais da Rede Nacional de Cuidados Continuados Integrados

Introdução: Na literatura internacional e nacional verifica-se a inexistência de estudos sobre os correlatos psicológicos de cuidadores formais, como a resiliência e o coping. Apesar de se reconhecer a importância de uma prestação de cuidados mais compassivos e humanizados, mais uma vez, não existem estudos nesta área. Este facto estende-se aos cuidadores formais que trabalham com pessoas em situação de dependência, na Rede Nacional de Cuidados Continuados Integrados. Assim, foram nossos objetivos: caraterizar os cuidadores formais de algumas Unidades de Cuidados Continuados (UCC) da RNCCI em variáveis sociodemográficas e profissionais; analisar os seus níveis de resiliência, coping e autocompaixão; verificar se existem associações significativas entre estas variáveis e com as variáveis sociodemográficas e profissionais. Metodologia: 78 cuidadores formais (sexo feminino, n = 76; 97,4%), com uma média de idades de 35,45 anos (DP = 9,0) forneceram o seu consentimento informado para preencherem um questionário sociodemográfico e profissional, a Escala de Avaliação Global da Resiliência, o Brief COPE e a Self Compassion Scale (SELFCS). Resultados: Os cuidadores revelaram um nível médio de resiliência (total). A dimensão de coping com média mais elevada foi o Coping ativo e a com média mais baixa foi o Uso de substâncias. Na SELFCS a dimensão com média mais elevada foi o Calor/compreensão e a com média mais baixa foi o Isolamento. No geral, a pontuação total de resiliência correlacionou-se de forma positiva com as dimensões positivas da autocompaixão (SELFCS) e de forma negativa com as dimensões negativas desta escala. As dimensões mais positivas de coping correlacionaram-se de forma positiva com as dimensões positivas de autocompaixão e as mais negativas de coping com as dimensões negativas de autocompaixão. Quanto maior a idade dos cuidadores menor o nível de Suporte Emocional e maior o nível de Religião e Mindfulness. Mais horas de trabalho associaram-se a menor resiliência e a maior nível de Suporte Emocional Discussão: Este estudo revelou, ainda que numa amostra reduzida, que os cuidadores formais das UCC parecem revelar níveis equilibrados em correlatos psicológicos importantes quando se “cuida” de outra pessoa. Porém, as UCC devem preocupar-se em fomentar, junto dos cuidadores, níveis mais elevados de resiliência, estratégias mais positivas de coping e a compaixão auto e hétero dirigida, para assegurar um “cuidar” mais pleno quer para os profissionais, quer para aqueles que são cuidados. / Introduction: In the international and national literature, we verified the inexistence of studies about psychological correlates of formal caregivers, such as resilience and coping. Although the importance of more humanized and compassive care is recognized, again, there are no studies in this area. This is also verified regarding formal caregivers that work with people in a dependence situation, as in the National Network of Continuous Care. Our aims were to characterize the formal caregivers from some units of the National Network of Continuous Care in sociodemographic and professional variables; analyze these professionals levels of resilience, coping and self-compassion; verify if there are significant associations between these variables and with the sociodemographic and professional variables. Methodology: 78 formal caregivers (female, n = 76; 97,4%), with an mean age of 35,45 years (SD = 9,0) provided their informed consent to fill in a professional and sociodemographic questionnaire, the Global Resiliency Evaluation Scale, the Brief COPE and the Self Compassion Scale (SELFCS). Results: The caregivers showed a medium level of resilience. The coping dimension with the highest mean was Active coping and the dimension with the lowest mean was Substance Use. Regarding SELFCS the dimension with the highest mean was Warmth, contrasting with Isolation, the dimension with the lowest mean. Overall, the total score of resilience was positively correlated with self-compassion positive dimensions (SELFCS) and negatively correlated with the negative dimensions of this scale. The most positive dimensions of coping were positively correlated with the positive dimensions of self-compassion and the most negative dimensions of coping were correlated with the negative dimensions of self-compassion. Older caregivers showed lower use of Emotional support and higher level of Religion and Mindfulness use. More daily hours of work were associated with less resilience and higher Emotional Support. Discussion: This study revealed, although in a small sample, that Continuous Care Units (CCU) formal caregivers seem to have balanced levels of psychological correlates that are important while caring for others. However, the CCU should promote, in the caregivers higher levels of resilience, coping and self-compassion, to ensure a better care, simultaneously the professionals and patients.