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BACKGROUND: Burns are a global public health problem, accounting for around 300,000 deaths annually. Burns have significant consequences for patients, families, healthcare teams and systems. Evidence suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making processes and family care. Research is needed on how to optimise palliative care referrals. AIM: To identify triggers for palliative care referral in critically burned patients based on professionals' views, experiences and practices. DESIGN: Qualitative study using in-depth interviews. SETTING/PARTICIPANTS: All five Burn Intensive Care Units reference centres across Portugal were invited; three participated. Inclusion criteria: Professionals with experience/working in these settings. A total of 15 professionals (12 nurses and 3 physicians) participated. Reflexive thematic analysis was performed. RESULTS: Three main triggers for palliative care referral were identified: (i) Burn severity and extension, (ii) Co-morbidities and (iii) Multiorgan failure. Other triggers were also generated: (i) Rehabilitative palliative care related to patients' suffering and changes in body image, (ii) Family suffering and/or dysfunctional and complex family processes, (iii) Long stay in the burn intensive care unit and (iv) Uncontrolled pain. CONCLUSIONS: This study identifies triggers for palliative care in burn intensive care units based on professionals' views, clinical experiences and practices. The systematisation and use of triggers could help streamline referral pathways and strengthen the integration of palliative care in burn intensive care units. Research is needed on the use of these triggers in clinical practice to enhance decision-making processes, early and high-quality integrated palliative care and proportionate patient and family centred care.
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Unidades de Terapia Intensiva , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Pesquisa Qualitativa , Encaminhamento e Consulta , Atenção à SaúdeRESUMO
INTRODUCTION AND OBJECTIVES: Prevalence and mortality of chronic liver disease have risen significantly. In end stage liver disease, the survival of patients is approximately two years. Despite the poor prognosis and high symptom burden of these patients, integration of palliative care is limited. We aim to assess associated factors and trends in palliative care use in recent years. MATERIALS AND METHODS: A Multicenter retrospective cohort of patients with end stage liver disease who suffered in-hospital mortality between 2017 and 2019. Information regarding patient demographics, hospital characteristics, comorbidities, etiology, decompensations, and interventions was collected. Two-sided tests and logistic regression analysis were used to identify factors associated with palliative care use. RESULTS: A total of 201 patients were analyzed, with a yearly increase in palliative care consultation: 26.7 % in 2017 to 38.3 % in 2019. Patients in palliative care were older (65.72 ± 11.70 vs. 62.10 ± 11.44; p = 0.003), had a lower Karnofsky functionality scale (χ=18.104; p = 0.000) and had higher rates of hepatic encephalopathy (32.1 % vs. 17.4 %, p = 0.007) and hepatocarcinoma (61.7 % vs. 26.2 %; p = 0.000). No differences were found for Model for End-stage Liver Disease (19.28 ± 6.60 vs. 19,90 ± 5.78; p = 0.507) or Child-Pugh scores (p = 0.739). None of the patients who die in the intensive care unit receive palliative care (0 % vs 31.6 %; p = 0.000). Half of the palliative care consultations occurred 6,5 days before death. CONCLUSIONS: Palliative care use differs based on demographics, disease complications, and severity. Despite its increasing implementation, palliative care intervention occurs late. Future investigations should identify approaches to achieve an earlier and concurrent care model.
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BACKGROUND: Advance directives (ADs) were implemented in Portugal in 2012. Although more than a decade has passed since Law 25/2012 came into force, Portuguese people have very low levels of adherence. In this context, this study aimed to identify and analyse the attitudes of people aged 18 or older living in Portugal towards ADs and to determine the relationships between sociodemographic variables (gender/marital status/religion/level of education/residence/whether they were a health professional/whether they had already drawn up a living will) and people's attitudes towards ADs. METHODS: An online cross-sectional analytical study was conducted using a convenience sample. For this purpose, a request (email) that publicized the link to a -form-which included sociodemographic data and the General Public Attitudes Toward Advance Care Directives (GPATACD) scale-was sent to 28 higher education institutions and 30 senior universities, covering all of mainland Portugal and the islands (Azores and Madeira). The data were collected between January and February 2023. RESULTS: A total of 950 adults from completed the online form. The lower scores (mean 1 and 2) obtained in most responses by applying the GPATACD scale show that the sample of the Portuguese population has a very positive attitude towards ADs. The data showed that women, agnostics/atheists, health professionals and those who had already made a living will had more positive attitudes (p < 0.001) towards ADs. There were no statistically significant differences in the attitudes of the Portuguese population sample towards ADs in relation to marital status, education level, and residence. CONCLUSION: The results obtained enable us to confirm that this sample of the Portuguese population has a positive attitude towards ADs. We verify that there are certain fringes of this sample with certain sociodemographic characteristics (women, agnostics/atheists, health professionals and those who had already made a living will) that have a more positive attitude towards ADs. This data could facilitate the implementation and adjustment of relevant measures, particularly in the field of health education and aimed at groups with less favourable attitudes, to increase the effectiveness of voluntary exercise of citizens' autonomy in end-of-life care planning.
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Diretivas Antecipadas , Atitude , População Europeia , Adulto , Humanos , Feminino , Portugal , Estudos Transversais , Conhecimentos, Atitudes e Prática em SaúdeRESUMO
BACKGROUND: In March 2020, the outbreak caused by the SARS-CoV-2 virus was declared a pandemic, resulting in numerous fatalities worldwide. To effectively combat the virus, it would be beneficial to involve professionals who specialize in symptom control for advanced illnesses, working closely with other specialties throughout the illness process. This approach can help manage a range of symptoms, from mild to severe and potentially life-threatening. No studies have been conducted in Portugal to analyse the intervention of Palliative Medicine at the end of life of Covid-19 patients and how it differs from other specialties. This knowledge could help determine the importance of including it in the care of people with advanced Covid-19. OBJECTIVES: The objective of this study is to examine potential differences in the care provided to patients with Covid-19 during their Last Hours and Days of Life (LHDOL) between those who received care from Palliative Medicine doctors and those who did not. METHODS: This is a retrospective cohort study spanning three months (Dec 2020 to Feb 2021), the duration of the Support Unit especially created to deal with Covid-19 patients. The database included clinical files from 181 patients admitted to the Support Unit, 27 of which died from Covid-19. RESULTS: Statistically significant differences were identified in the care provided. Specifically, fewer drugs were administered at the time of death, including drugs for dyspnoea, pain and agitation, suspension of futile devices and use of palliative sedation to control refractory symptoms. CONCLUSIONS: End-of-life care and symptomatic control differ when there's regular follow-up by Palliative Medicine, which may translate less symptomatic suffering and promote a dignified and humane end of life.
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COVID-19 , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Estudos Retrospectivos , SARS-CoV-2 , Assistência Terminal/métodos , MorteRESUMO
BACKGROUND: The field of bioethics examines the moral and ethical dilemmas that arise in the biological sciences, healthcare, and medical practices. There has been a rise in medical negligence cases, complaints against healthcare workers, and public dissatisfaction with healthcare professionals, according to reports from the Indian Medical Council and other healthcare associations. We intend to assess the level of knowledge, attitude, and practice of bioethics among the registered healthcare professionals (HCPs) of Maharashtra, India. METHODS: A State-level online survey was conducted among the registered HCPs (n = 2143) casing all five regions of the Maharashtra state using a pre-tested self-administered questionnaire. The responses were expressed as mean, and proportions with their standard deviation and 95% CI respectively. Binary logistic regression and a multivariate logistic model were used to determine factors associated with knowledge, attitude, and practice of bioethics. RESULTS: Of the 2143 registered HCPs in Maharashtra included in this study, most of them (65.2%) had adequate knowledge of bioethics. Adequate knowledge was associated with lower age, profession (nurses and dentists), employment in the private sector, HCPS at Marathwada and Pune, and higher educational attainment. About 3 in 5 HCPs (59.4%) had a favorable attitude towards the ethical practice of bioethics, and was associated with profession, place of work, region of practice, and work experience. The distribution of unethical bioethics practices among 10 items was proportionally high, and only 34.4% reported good/fair practice. The common unethical practices in the state were allowing patients to be examined by interns, and not informing them about professional misconduct to the regulatory bodies. CONCLUSION: Most HCPs had adequate knowledge of bioethics, which is encouraging and would favor the laying foundation for forming a good bioethics framework. Only 3/5 HCPs demonstrated a favorable attitude, and the observed unethical practice is alarmingly common. A serious consideration to evaluate the compliance level of bioethics practice periodically and measures to educate, sensitize, and train bioethics among HCPs in Maharashtra is warranted.
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Bioética , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Estudos Transversais , Índia , Pessoal de SaúdeRESUMO
BACKGROUND: Motor performances of youth are related to growth and maturity status, among other factors. AIM: To estimate the contribution of skeletal maturity status per se to the motor performances of female athletes aged 10-15 years and the mediation effects of growth status on the relationships. SUBJECTS AND METHODS: Skeletal age (TW3 RUS SA), body size, proportions, estimated fat-free mass (FFM), motor performances, training history and participation motivation were assessed in 80 non-skeletally mature female participants in several sports. Hierarchical and regression-based statistical mediation analyses were used. RESULTS: SA per se explained a maximum of 1.8% and 5.8% of the variance in motor performances of athletes aged 10-12 and 13-15 years, respectively, over and above that explained by covariates. Body size, proportions, and hours per week of training and participation motivation explained, respectively, a maximum of 40.7%, 18.8%, and 22.6% of the variance in performances. Mediation analysis indicated specific indirect effects of SA through stature and body mass, alone or in conjunction with FFM on performances. CONCLUSION: SA per se accounted for small and non-significant amounts of variance in several motor performances of female youth athletes; rather, SA influenced performances indirectly through effects on stature, body mass and estimated FFM.
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Determinação da Idade pelo Esqueleto , Esportes , Adolescente , Feminino , Humanos , Criança , Tamanho Corporal , Atletas , EstaturaRESUMO
BACKGROUND: The World Health Organization characterizes infertility as a disease since 2009; however, in many countries, reproductive health is not prioritized. Characterizing a target population and knowing the barriers to accessing reproductive care may allow for a broadening of the discussion on how to provide equal opportunities. The objective of this study was to develop and validate a questionnaire that seeks to identify socioeconomic and cultural characteristics of Brazilian infertile couples to open the discussion on the principle of fair access to health. METHODS: (1) literature review in the main databases, (2) questionnaire elaboration by researchers within the areas of human reproduction and bioethics, concerned with content adequacy and comprehension, using the Google Forms online platform, (3) pilot study - the questionnaire was applied to 54 couples, over 18 years of age, that were seeking treatment for infertility and accepted to participate in the study and (4) statistical analysis - for continuous numerical variables, mean, standard deviation and 95% CI of the means were presented. For discrete numerical variables, median, interquartile range, minimum and maximum were presented. RESULTS: Forty-four questionnaires were fully completed and with adequate answers. The questionnaire proved to be objective and easy to understand. It was possible to obtain information on education, race of the couple, the impact of infertility on the couple's life, socioeconomic conditions, and the main difficulties in accessing medical care for treatment of infertility. CONCLUSION: The questionnaire proved to be feasible in collecting appropriate information to characterize a target population and the only limitation was that there was no academic expert evaluation prior to the pilot test.
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Infertilidade , Humanos , Adolescente , Adulto , Brasil , Projetos Piloto , Infertilidade/terapia , Infertilidade/epidemiologia , Inquéritos e Questionários , EscolaridadeRESUMO
BACKGROUND: The influence of demographic factors on the completion and knowledge of the Portuguese Advance Directives (PAD) and the Health Care Proxy's (HCP) role is still not clear. OBJECTIVES: To identify sociodemographic features associated with knowledge and adherence to PAD and HCP in palliative care. DESIGN: Cross-Sectional analysis of the sociodemographic data, PAD and HCP role knowledge, and PAD Register from a group of Portuguese palliative patients and their caregivers enrolled on the DAVPAL trial to test the PAD efficacy in promoting better concordance between patients and caregivers. PARTICIPANTS: One hundred twenty participants (60 palliative patients and 60 caregivers). METHODS: After enrollment, the participants' sociodemographic data was acquired, their knowledge of PAD and the role of an HCP was questioned, and their prior register of the PAD was asked. RESULTS: 60 patients and 60 caregivers were included (n=120), with differences among them regarding age (p<.001), gender (p=.003), education (p<.001), job (p<.001), marital status (p=.043), and access to the internet (p=.003), but not regarding religion (p=.21). Only 13.3% of the participants were aware of PAD, 15.0% were aware of the HCP role, and 5.0% had previously filled a PAD. Religious beliefs (Non-Catholic) were the only sociodemographic factor significantly related to these three topics. CONCLUSIONS: There is low awareness of PAD and the HCP's role in palliative care, and there is higher knowledge on these topics among non-Catholic individuals. End-of-life decisions seem to be influenced by similarities in religious beliefs between patients and HCP. Improving education is necessary, namely in palliative care. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT05090072 . Retrospectively registered on 22/10/2021.
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Cuidadores , Fatores Sociodemográficos , Humanos , Estudos Transversais , Portugal , Diretivas AntecipadasRESUMO
BACKGROUND: Infertility is an increasingly prevalent disease in society and is considered by the World Health Organization to be a public health problem. An important ethical issue arises from the clarification of reproductive rights in a fair and equal way. The objective of this study was to deepen and update the knowledge and discussion about the difficulty of accessing infertility treatments in Brazil. METHODS: A cross-sectional observational study was carried out through the application of an online questionnaire that collected the socioeconomic characteristics of couples and identify how barriers to infertility care affect the most vulnerable populations. We included couples who sought medical assistance to achieve pregnancy at two clinics in the states of São Paulo and Minas Gerais. RESULTS: A total of 201 questionnaires were analyzed. Most couples self-declared as white and the average age of wives was 36 years and husbands 38 years. 65% (65%) of couples would proceed with the treatment in a different city to which they lived, 37% evaluated as having easy access to a medical specialist only after indication, and more than half of the participating have thought about giving up the treatment due to some difficulty in accessing it. 39% of participants sought more than one medical service to find better reception, 42% of couples sought more than one medical service to define where it would be better financially, and 67.2% referred to the high cost of treatments, that is, financial issues, as a great difficulty in accessing medical services and/or treatment. Although 72.6% of couples considered having a good quality of life, 54.2% admitted that infertility and the search for treatment generated anxiety/stress in the couple's life. CONCLUSION: There is a need for public education on reproductive health and for policymakers to raise awareness of the importance of the difficulty that many couples face in seeking treatment to become pregnant, especially in countries with less financial resources. Indeed, it is commonly accepted that there is a universal human right to access healthcare of appropriate quality as a matter of justice. Discussion of access to reproductive technologies should be considered taking into account the longstanding ethical debate regarding fertility, fecundity, and infertility, as well as reproductive care.
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Infertilidade , Qualidade de Vida , Feminino , Gravidez , Humanos , Adulto , Brasil , Estudos Transversais , Infertilidade/terapia , Justiça SocialRESUMO
OBJECTIVES: The aim of this article is to review and synthesize the evidence on end-of-life in burn intensive care units. METHODS: Systematic scoping review: Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews was used as a reporting guideline. Searches were performed in 3 databases, with no time restriction and up to September 2021. RESULTS: A total of 16,287 documents were identified; 18 were selected for analysis and synthesis. Three key themes emerged: (i) characteristics of the end-of-life in burn intensive care units, including end-of-life decisions, decision-making processes, causes, and trajectories of death; (ii) symptom control at the end-of-life in burn intensive care units focusing on patients' comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and palliative care. SIGNIFICANCE OF RESULTS: End-of-life care is a major step in the care provided to critically ill burned patients. Dying and death in burn intensive care units are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different dying trajectories were described, suggesting the possibility to develop further studies to identify triggers for palliative care referral. Symptom control was not described in detail. Palliative care was rarely involved in end-of-life care for these patients. This review highlights the need for early and high-quality palliative and end-of-life care in the trajectories of critically ill burned patients, leading to an improved perception of end-of-life in burn intensive care units. Further research is needed to study the best way to provide optimal end-of-life care and foster integrated palliative care in burn intensive care units.
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Estado Terminal , Assistência Terminal , Humanos , Cuidados Paliativos , Unidades de Terapia Intensiva , MorteRESUMO
BACKGROUND: Hospital environment is generally propitious to smoking cessation for several reasons, such as a legal ban on smoking in hospital facilities, greater vulnerability facing acute illness and the continuous contact with healthcare professionals. AIMS: To evaluate the effectiveness of intensive smoking cessation intervention during hospital admission due to acute respiratory disease and a 6-month follow up after hospital discharge. METHODS: This prospective study included patients admitted at our Pulmonology Department due to acute respiratory disease - active smokers who consented to participate in smoking cessation counselling programme - between January and December 2019. After hospital discharge, the patients completed a 6-month follow up. Statistical analysis was performed with spss system version 24.0, using univariate analysis with Chi-squared and t-test. RESULTS: We included 30 patients, 86.7% male, with a mean age of 58.6 ± 13.6 years. The mean length of stay was 10 ± 11 days. The mean smoking time was 40.3 ± 14.4 years and the mean smoking load 40 ± 26 pack-year units. The mean level of nicotine dependence, measured by the Fagerström test, was 4.3 ± 2.8. None of the patients accepted smoking cessation pharmacological therapy. After hospital discharge, 19 patients were seen in consultation, 11 of whom maintained smoking cessation at 6 months, determining an overall smoking cessation rate of 36.7%. There was a statistically significant difference in the smoking cessation successful group regarding the motivation to quit smoking and the Richmond test compared to the unsuccessful group. CONCLUSION: Smoking cessation counselling behaviour programmes during hospitalisation, with regular follow up after hospital discharge, contribute to an increase in smoking cessation rate.
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Transtornos Respiratórios , Abandono do Hábito de Fumar , Humanos , Masculino , Pessoa de Meia-Idade , Idoso , Feminino , Estudos Prospectivos , Hospitalização , Aconselhamento , Atenção à SaúdeRESUMO
BACKGROUND: It is fundamental to optimize and retain health-related quality of life (HRQoL) in the long term in patients with home mechanical ventilation (HMV). Therefore, this study aimed to evaluate the evolution of the HRQoL in patients already established on HMV across a period of 5 years and whether the HRQoL is associated with mortality. METHODS: This was a 5-year longitudinal cohort study conducted in an Outpatient Ventilation Clinic. Consecutive patients on HMV for at least 30 days responded to the Severe Respiratory Insufficiency (SRI) questionnaire at inclusion and again at 5 years. RESULTS: A total of 104 patients were included (male 56.7%, median age 69 [P25;P75] [61;77] years). Almost half of the patients had COPD (49.0%). Patients were on HMV for a median of 43.5 [22;85.5] months, with overall good adherence (median 8 [6;9] daily hours). Fifty-seven (54.8%) patients were alive at 5 years. In surviving patients, the only difference with statistical significance was in the attendant symptoms and sleep subscale, with patients scoring 7.1 [-4.5;25] points higher in the final questionnaire (p = 0.002). Survivors had significantly better scores in the SRI at inclusion than deceased patients (median 59.6 [49.2;71.7] vs 48.7 [38.4;63.2]; p = 0.004). CONCLUSIONS: These results shows that HRQoL remains stable in surviving patients with HMV at five years. It also suggests that SRI can be of important prognostic value and help predict the terminal phase of the disease course in patients with long-term HMV.
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Respiração Artificial , Insuficiência Respiratória , Humanos , Masculino , Idoso , Respiração Artificial/métodos , Qualidade de Vida , Insuficiência Respiratória/terapia , Estudos Longitudinais , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Caregivers frequently assume the role of surrogate decision-makers but often are unable to accurately predict patients' preferences. This trial aims to find if the use of the Advance Directives documents as a communication tool, improves the agreement between patients and caregivers. METHODS: This trial occurred in a palliative care service of a Portuguese hospital center. A prospective, single-blinded, controlled, randomized trial, enrolling patients and caregivers as a dyad was conducted. Participants individually fulfilled an Advance Directive document, in which patients reported their end-of-life preferences and caregivers reported their decisions as patients' health surrogates. Dyads were randomly assigned to the Intervention or the Control group, in which the physician respectively promoted an open discussion about patients' Advance Directives or evaluated patients' clinical condition. Caregivers' Advance Directives as surrogates were collected one month later. Proportions of agreement and Cohen's κ were used to access agreement and reliability, respectively, between the dyads. RESULTS: Results from 58 dyads were analyzed. We observed an improvement in agreement between the caregivers' answers and the patients' wishes on two-thirds (8/12) of the answers, in the Intervention group, contrasting to one-quarter (3/12) of the answers, in the Control group, despite statistical significance in differences wasn´t obtained. CONCLUSIONS: Although not reaching statistical significance, the results suggest that discussions of advance directives with physicians may lead to better prepared surrogates. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT05090072 . Retrospectively registered on 22/10/2021.
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Preferência do Paciente , Médicos , Diretivas Antecipadas , Humanos , Estudos Prospectivos , Reprodutibilidade dos TestesRESUMO
BACKGROUND: A curriculum is a fundamental tool for educators, and teaching bioethics is fundamental to good medical practice. Studies report a lack of consensus on the teaching of bioethics in undergraduate medicine, and a critical issue is that there remain no minimum curricular parameters. This study performed an analysis between the bioethics curricula of the medical schools of Brazil and Portugal and UNESCO's Core Curriculum, in addition to proposing key criteria for designing a core bioethics curriculum. METHODS: This is a cross-sectional, descriptive study that analyzes the bioethics curricula of the medical schools in Brazil and in Portugal. The design of the study includes a qualitative summative content analysis-based approach and a quantitative analysis by means of descriptive statistics. RESULTS: Bioethics is taught in both Brazil and Portugal in a diversified way. The results showed that 65.5% of the medical schools analyzed provided at least the 30-h minimum workload recommended by the UNESCO Core Curriculum. Furthermore, bioethics sporadically offered at the end of the medical program in the vast majority of schools studied. CONCLUSIONS: The most important points to take away from this study are the diversity of the curricular structure of bioethics courses and the lack of formalization of bioethics in the curricula of medical schools in Brazil and Portugal. Given the value of bioethics in clinical practice, we propose that medical schools in Portugal and Brazil update their curricula to encompass minimum criteria, which should be similar to one another and based on common sources, but which should also be tailored to each culture.
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Bioética , Educação de Graduação em Medicina , Bioética/educação , Estudos Transversais , Currículo , Humanos , Portugal , Faculdades de MedicinaRESUMO
BACKGROUND: The patient's experience of treatment is a cornerstone of high-quality healthcare, along with clinical safety and effectiveness. We aimed to evaluate the patients' perspectives regarding home mechanical ventilation (HMV) follow up in an outpatient setting and ascertain differences between patients that started HMV in the outpatient setting compared to other settings. METHODS: This cross-sectional study was conducted with patients with chronic respiratory failure under HMV in the Outpatient Ventilation Clinic. Patients filled in a patient experience questionnaire and the S3-NIV questionnaire. RESULTS: The study included 235 patients (127, 54% male), median 70 [25-75 percentiles 64-76] years) and about half were adapted to HMV in the outpatient setting (117, 49.8%). Patients had a daily ventilator usage of 8.0 [6.0-10.0] hours and have been on ventilator for a median of 35.0 [12.0-66.0] months. Patients reported an overall good experience regarding education at initiation (209 [88.9%] considered the information given was enough), short time to adaptation [104 (44.3%) felt adapted after some hours], with perceived benefits (171 [72.8%] reported less shortness of breath, 158 (67.2%) improved quality of life and 150 (63.8%) less tiredness). Benefits overcame the treatment side-effects (158 [67.2%] reported mucosal dryness, 109 (46.4%) mask sores and 96 (40.9%) leaks). There was no difference in terms of reported health gains, side effects or time to adaptation between adaptation settings, but patients starting HMV in the outpatient setting reported better communication and education at adaptation. CONCLUSIONS: Outpatient setting was perceived as a positive experience, both in HMV initiation and follow up, with good patient-physician communication leading to significant health reported gains, improvement of health status and well-being and good treatment adherence.
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Serviços de Assistência Domiciliar , Respiração Artificial , Humanos , Masculino , Feminino , Pacientes Ambulatoriais , Qualidade de Vida , Estudos TransversaisRESUMO
The European Union (EU) faced high risks from personal data proliferation to individuals' privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual's control over their data is the so-called "right to be forgotten", the right to obtain from the controller the erasure of records. In gender transition, this right represents a powerful form of control over personal data, especially health data that may reveal a gender with which they do not identify and reject. Therefore, it is pertinent to discern whether the right to have personal data deleted-in particular, health data-is ethically acceptable in gender transition. Towards addressing the ethical dimensions of the right to be forgotten in this case, this study presents relevant concepts, briefly outlines history, ethics and law of records considering the evolution from paper to electronic format, the main aspects of identity construction and gender identity, and explores the relationship between privacy, data protection/information control and identity projection. Also, it discusses in gender transition the relation between "the right to self-determination", "the right to delete", and "the right to identity and individuality". Conclusions on the ethical admissibility of the 'right to be forgotten' to control gender-affirming information are presented.
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Identidade de Gênero , Privacidade , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: Forgiveness is linked with well-being, and social and health research has focused on the role and aspects of forgiveness that has been recently suggested as a phenomenon of public health importance. The Heartland Forgiveness Scale (HFS) was developed gathering three subscales to assess the forgiveness of others, forgiveness of self, and forgiveness of situation. The present study aimed to adapt the HFS into European Portuguese, and investigate its reliability and validity. METHODS: Translation and cross-cultural adaptation were conducted using a multistep forward-back translation process. Internal consistency was assessed by Cronbach's alpha. Confirmatory factor analysis was conducted to verify that the factor structure is the same as in the original HFS. The short version of the Ruminative Response Scale (RRS) and the Satisfaction with Life Scale (SWLS) were used to examine convergent validity. RESULTS: A sample of 222 university students, selected through convenience sampling, was used to access the validity of the European Portuguese version of the HFS (EPHFS). Cronbach's alpha for the European Portuguese HFS subscales were 0.777, 0.814 and 0.816 for Self, Others and Situation, respectively, indicating acceptable reliability. The 3-factor model of the original HFS was replicated in confirmatory factor analysis. As expected by evidence in the literature, positive and statistically significant correlations were found between SWLS and HFS and subscales. RRS showed negative and statistically significant correlations with HFS and subscales. CONCLUSIONS: The European Portuguese version of the HFS presented acceptable internal consistency, construct validity and confirmed the three-factor structure of the original HFS.
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Perdão , Inquéritos e Questionários/normas , Adulto , Comparação Transcultural , Feminino , Humanos , Masculino , Portugal , Qualidade de Vida , Reprodutibilidade dos Testes , Traduções , Adulto JovemRESUMO
BACKGROUND: During COVID-19 pandemic, healthcare workers (HCWs) have had high workload and have been exposed to multiple psychosocial stressors. The aim of this study was to evaluate HCWs in terms of the relative contributions of socio-demographic and mental health variables on three burnout dimensions: personal, work-related, and client-related burnout. METHODS: A cross-sectional study was performed using an online questionnaire spread via social networks. A snowball technique supported by health care institutions and professional organizations was applied. RESULTS: A total of 2008 subjects completed the survey. Gender, parental status, marriage status, and salary reduction were found to be significant factors for personal burnout. Health problems and direct contact with infected people were significantly associated with more susceptibility to high personal and work-related burnout. Frontline working positions were associated with all three dimensions. Higher levels of stress and depression in HCWs were significantly associated with increased levels of all burnout dimensions. Higher levels of satisfaction with life and resilience were significantly associated with lower levels of all burnout dimensions. CONCLUSIONS: All three burnout dimensions were associated with a specific set of covariates. Consideration of these three dimensions is important when designing future burnout prevention programs for HCWs.
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Esgotamento Profissional/epidemiologia , COVID-19/terapia , Pessoal de Saúde/psicologia , Pandemias , Adulto , COVID-19/epidemiologia , Estudos Transversais , Feminino , Pessoal de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Portugal/epidemiologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Decision-making in palliative care can be complex due to the uncertain prognosis and general fear surrounding decisions. Decision-making in palliative care may be influenced by spiritual and cultural beliefs or values. Determinants of the decision-making process are not completely understood, and spirituality is essential for coping with illness. Thus, this study aims to explore the influence of spirituality on the perception of healthcare decision-making in palliative care outpatients. METHODS: A cross-sectional study was developed. A battery of tests was administered to 95 palliative outpatients, namely: sociodemographic questionnaire (SQ), Decisional Conflict Scale (DCS), Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp), and a semi-structured interview (SSI) to study one's perception of spirituality and autonomy in decision-making. Statistical analyses involved descriptive statistics for SQ and SSI. The Mann-Whitney test was used to compare scale scores between groups and correlations were used for all scales and subscales. The analysis of patients' definitions of spirituality was based on the interpretative phenomenological process. RESULTS: Spiritual wellbeing significantly correlated with greater levels of physical, emotional and functional wellbeing and a better quality of life. Greater spiritual wellbeing was associated with less decisional conflict, decreased uncertainty, a feeling of being more informed and supported and greater satisfaction with one's decision. Most patients successfully implemented their decision and identified themselves as capable of early decision-making. Patients who were able to implement their decision presented lower decisional conflict and higher levels of spiritual wellbeing and quality of life. Within the 16 themes identified, spirituality was mostly described through family. Patients who had received spiritual care displayed better scores of spiritual wellbeing, quality of life and exhibited less decisional conflict. Patients considered spirituality during illness important and believed that the need to receive spiritual support and specialised care could enable decision-making when taking into consideration ones' values and beliefs. CONCLUSION: The impact of spiritual wellbeing on decision-making is evident. Spirituality is a key component of overall wellbeing and it assumes multidimensional and unique functions. Individualised care that promotes engagement in decision-making and considers patients' spiritual needs is essential for promoting patient empowerment, autonomy and dignity.
Assuntos
Tomada de Decisões , Pacientes Ambulatoriais/psicologia , Cuidados Paliativos/psicologia , Espiritualidade , Adaptação Psicológica , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais/estatística & dados numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Burn units are intensive care facilities specialized in the treatment of patients with severe burns. As burn injuries have a major impact in physical, psychosocial, and spiritual health, palliative care can be a strengthening component of integrated care. AIM: To review and appraise the existing evidence about the integration of palliative care in burn intensive care units with respect to (1) the concept, model and design and (2) the benefits and outcomes of this integration. DESIGN: A systematic review was conducted following PRISMA guidelines. Protocol registered with PROSPERO (CRD42018111676). DATA SOURCES: Five electronic databases were searched (PubMed/NLM, Web of Science, MEDLINE/TR, Ovid, and CINAHL/EBSCO) until May 2019. A narrative synthesis of the findings was constructed. Hawker et al.'s tool was used for quality appraisal. RESULTS: A total of 299 articles were identified, of which five were included for analysis involving a total of 7353 individuals. Findings suggest that there may be benefits from integrating palliative care in burn units, specifically in terms of patients' comfort, decision-making processes, and family care. Multidisciplinary teams may experience lower levels of burden as result of integrating palliative care in burn units. CONCLUSION: This review reflects the challenging setting of burn intensive care units. Evidence from these articles suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making process, and family care. Further research is needed to better understand how the integration of palliative care in burn intensive care units may be fostered and to identify the outcomes of this integration.