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1.
Ann Hepatol ; 29(5): 101518, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38851396

RESUMEN

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.


Asunto(s)
Enfermedad Hepática en Estado Terminal , Cuidados Paliativos , Derivación y Consulta , Humanos , Masculino , Femenino , Persona de Mediana Edad , Enfermedad Hepática en Estado Terminal/terapia , Enfermedad Hepática en Estado Terminal/mortalidad , Enfermedad Hepática en Estado Terminal/diagnóstico , Derivación y Consulta/estadística & datos numéricos , Anciano , Estudios Retrospectivos , Mortalidad Hospitalaria , Neoplasias Hepáticas/terapia , Neoplasias Hepáticas/mortalidad , Neoplasias Hepáticas/epidemiología
2.
Reprod Health ; 20(1): 183, 2023 Dec 08.
Artículo en Inglés | MEDLINE | ID: mdl-38062511

RESUMEN

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.


Asunto(s)
Infertilidad , Humanos , Adolescente , Adulto , Brasil , Proyectos Piloto , Infertilidad/terapia , Infertilidad/epidemiología , Encuestas y Cuestionarios , Escolaridad
3.
BMC Med Ethics ; 24(1): 69, 2023 09 04.
Artículo en Inglés | MEDLINE | ID: mdl-37667304

RESUMEN

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.


Asunto(s)
Infertilidad , Calidad de Vida , Femenino , Embarazo , Humanos , Adulto , Brasil , Estudios Transversales , Infertilidad/terapia , Justicia Social
4.
BMC Palliat Care ; 22(1): 186, 2023 Nov 22.
Artículo en Inglés | MEDLINE | ID: mdl-37990181

RESUMEN

BACKGROUND: Physicians' communication with patients and their families is important during both the disease diagnosis and prognosis stages and through the follow-up process. Effective physician communication improves patients' quality of life and satisfaction with care and helps reduce suffering for those newly diagnosed with advanced progressive illnesses. This study aims to identify the communication strategies physicians use in the transition to palliative care and how these professionals perceive their academic and clinical preparation concerning this task. METHODS: A cross-sectional and quantitative study. Physicians providing palliative care at the Maputo Central Hospital, Mozambique, were invited to complete a 17-question questionnaire. This questionnaire was based on a Brazilian adaptation of the Setting-Perception-Invitation-Knowledge-Emotions-Strategy (SPIKES) tool, the P-A-C-I-E-N-T-E protocol, with additional questions regarding socio-demographic details and the integration of "communication of bad news" into hospital training. RESULTS: Of the 121 participants, 62 (51.2%) were male, and 110 (90.9%) were general practitioners, with a median age of 36 years old. They had worked in clinical practice for a median of 8 years and in their current department for three years. The majority of the participants considered that they have an acceptable or good level of bad news communication skills and believed that they do it in a clear and empathic way, paying attention to the patient's requests and doubts; however, most were not aware of the existing tools to assist them in this task and suggested that delivering bad news ought to be integrated into the undergraduate medical course and included in hospital training. CONCLUSIONS: This study adds to our understanding of physicians' strategies when communicating bad news in the context of palliative care at one Mozambique hospital. As palliative care is not fully implemented in Mozambique, it is important to use protocols suitable to the country's healthcare level to improve how doctors deal with patients and their family members.


Asunto(s)
Médicos Generales , Relaciones Médico-Paciente , Humanos , Masculino , Adulto , Femenino , Revelación de la Verdad , Estudios Transversales , Mozambique , Calidad de Vida , Comunicación , Hospitales
5.
BMC Palliat Care ; 21(1): 165, 2022 Sep 22.
Artículo en Inglés | MEDLINE | ID: mdl-36138380

RESUMEN

BACKGROUND: Advance care planning (ACP) and goals of care discussions are important instruments that enable respect for patient autonomy, especially in patients with a life-threatening disease, such as cancer. Despite their well-established benefits, ACP and goals of care discussions are still not frequently performed in clinical oncology practice. Understanding the barriers to this topic is the first step toward developing future interventions that are more likely to improve professional practice and patient satisfaction with care. AIM: To explore Brazilian oncologists' barriers to discuss goals of care and advance care planning. METHODS: A cross-sectional study was developed to identify Brazilian oncologists' barriers to discussing goals of care and ACP. The Decide-Oncology questionnaire was used to identify the importance of these barriers according to oncologists' perceptions. Participants were asked to rank the importance of various barriers to discussing goals of care, ranging from 1 (extremely unimportant) to 7 (extremely important). A quantitative analysis using descriptive statistics was used, including median and interquartile intervals and a qualitative analysis based on Bardin content analysis of the two open questions. RESULTS: Sixty-six oncologists participated in this study. Most of them perceived the patient and family's related barriers as the most important, such as patients' difficulty in understanding their diagnosis and accepting their prognosis. Physician and external related factors, such as lack of training and lack of time for this conversation, were also described as important barriers. Participants with formal training regarding goals of care communication and with experience in palliative care perceived the lack of patients' advanced directives as a significant barrier and manifested more willingness to participate in decision-making about goals of care. The lack of access and of support for referral to palliative care was also considered a significant barrier for ACP and goals of care discussion. CONCLUSION: The identification of barriers that limit the discussion of ACP and early palliative care referrals can certainly help to prioritise the next steps for future studies aimed at improving ACP and helping clinicians to better support patients through shared decision-making based on the patient's values and experiences.


Asunto(s)
Planificación Anticipada de Atención , Oncólogos , Brasil , Estudios Transversales , Humanos , Cuidados Paliativos
6.
BMC Med Educ ; 22(1): 199, 2022 Mar 22.
Artículo en Inglés | MEDLINE | ID: mdl-35317810

RESUMEN

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.


Asunto(s)
Bioética , Educación de Pregrado en Medicina , Bioética/educación , Estudios Transversales , Curriculum , Humanos , Portugal , Facultades de Medicina
7.
Palliat Support Care ; 19(5): 605-614, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-33818358

RESUMEN

OBJECTIVE: Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients' family members. METHOD: In June 2020, a bibliographic search was performed using the terms "Dignity Therapy" and "Palliative Care" in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date. RESULTS: Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment. SIGNIFICANCE OF RESULTS: There is evidence of the benefits of DT for palliative patients' family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.


Asunto(s)
Aflicción , Cuidados Paliativos , Familia , Humanos , Psicoterapia , Respeto
8.
Health Qual Life Outcomes ; 18(1): 289, 2020 Aug 26.
Artículo en Inglés | MEDLINE | ID: mdl-32843042

RESUMEN

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.


Asunto(s)
Perdón , Encuestas y Cuestionarios/normas , Adulto , Comparación Transcultural , Femenino , Humanos , Masculino , Portugal , Calidad de Vida , Reproducibilidad de los Resultados , Traducciones , Adulto Joven
9.
BMC Palliat Care ; 19(1): 22, 2020 Feb 21.
Artículo en Inglés | MEDLINE | ID: mdl-32085765

RESUMEN

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.


Asunto(s)
Toma de Decisiones , Pacientes Ambulatorios/psicología , Cuidados Paliativos/psicología , Espiritualidad , Adaptación Psicológica , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pacientes Ambulatorios/estadística & datos numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/tendencias , Encuestas y Cuestionarios
10.
Death Stud ; 43(5): 292-300, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-29856272

RESUMEN

This study aimed to understand, through the bias of everyday life, the phenomenon of maternal mourning. It is a qualitative pilot study on three bereaved mothers. Semi-structured interviews were used for data collection and content analysis was performed using typical categories of daily life. It was possible to observe significant changes in the mothers' daily lives after their children's deaths; however, they created strategies that minimized such impacts. Losing a child leads to reconstructing one's own history and identity. It is believed that daily life is an important bias, and thus its study could help us understand this phenomenon.


Asunto(s)
Adaptación Psicológica/fisiología , Aflicción , Pesar , Relaciones Madre-Hijo , Madres/psicología , Femenino , Humanos , Persona de Mediana Edad , Proyectos Piloto , Investigación Cualitativa
11.
Ann Palliat Med ; 13(2): 386-396, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38584475

RESUMEN

BACKGROUND: Multiple sclerosis (MS) often presents a long and uncertain evolution. Treatment decisions in advanced MS are supported by robust evidence, but recent guidelines have suggested a shift to a palliative approach as the disease progresses. This study aims to describe what is known about the integration of palliative care (PC) in patients with severe MS (cost-effectiveness, moment of reference, and perspective of stakeholders). METHODS: A scoping review was developed, and the Scopus, Medline (PubMed), ISI Web of Knowledge, and SAGE databases were consulted, using the key terms: "multiple sclerosis" AND "palliative care". Studies on the perspectives of patients, caregivers, and health professionals regarding the integration of PC in MS were included. No restrictions were applied regarding the subtype of MS, gender, ethnicity, frequency of use of health services, and language. RESULTS: Of 158 articles identified, 19 were included in the review. Key factors were identified, such as the effectiveness of PC intervention in severe MS, the financial impact of providing PC compared to conventional care, the reduction of symptoms and caregiver burden, and the perception of unmet needs by users, health professionals, and caregivers during the PC approach. CONCLUSIONS: Patients with MS should have access to specialized PC when they reach the severe phase of the disease. Providing a multidisciplinary team to provide targeted consultations based on the patient's needs may be most appropriate. These issues have important implications for the future planning and provision of PC services.


Asunto(s)
Esclerosis Múltiple , Cuidados Paliativos , Humanos , Esclerosis Múltiple/terapia , Cuidadores , Pacientes
12.
Healthcare (Basel) ; 12(15)2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39120232

RESUMEN

BACKGROUND: Palliative care (PC) corresponds to an approach that enhances the quality of life for patients facing life-threatening diseases, such as cancer, as well as for their families. There are various models for providing palliative care. Early referral to PC of patients with advanced cancer has a significant positive impact on their quality of life. However, the criteria for early referral still remain controversial. OBJECTIVES: To evaluate patients' symptomatic intensity and perception of quality of life on admission to a PC unit and to analyze these two variables according to different models of approach (outpatient and inpatient care). METHODS: A cross-sectional, descriptive, and correlational study was conducted with a sample of 60 patients sequentially admitted to a PC unit from palliative outpatient consultations or other inpatient services in a tertiary hospital dedicated to oncology care. The evaluation protocol included a sociodemographic and medical questionnaire, the Edmonton Symptom Assessment Scale (ESAS), and the Palliative Care Outcome Scale (POS) completed by patients within the first 24 h after admission. RESULTS: The participants were mostly male (61.7%), with a median age of 72 years. The majority of patients (n = 32; 53.3%) were undergoing outpatient treatment, while the remaining individuals (n = 28; 46.7%) were transferred from other hospital services (inpatient care). In the outpatient care group, higher scores for fatigue and dyspnea were observed. Conversely, in the inpatient care group, higher scores were observed for pain, depression, and anxiety. There were significant differences between the two groups regarding the POS dimensions of meaning of life, self-feelings, and lost time. In the inpatient group, there was a longer time between diagnosis and referral to PC; however, it was also in the inpatient group that there was less time between PC referral and first PC evaluation, between PC referral and PC unit admission, and between PC referral and death. There were no significant correlations between referral times and ESAS/POS scores in the inpatient and outpatient groups. CONCLUSIONS: The patients admitted to the Palliative Care Unit presented a high symptom burden and changes in the perception of quality of life. However, there are no statistically significant differences between one model of approach in relation to the other. It was found that poorer symptom control and quality of life were associated with a shorter referral time for PC, because this was only initiated after curative care was suspended, particularly in our institutional context. Early referrals to the PC team are essential not only to relieve symptom-related distress but also to improve treatment outcomes and quality of life for people with cancer.

13.
Clin Res Hepatol Gastroenterol ; 48(7): 102416, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38986810

RESUMEN

BACKGROUND AND AIMS: The prevalence and mortality of chronic liver disease has risen significantly. In end stage liver disease (ESLD) the survival of patients is approximately 2 years. Despite the poor prognosis and high symptom burden of these patients, integration of palliative care is reduced. We aim to analyze the agreement between palliative care and hepatology physicians of clinical scenarios that could require palliative care intervention. METHODS: A cross-sectional study was conducted. Palliative care and hepatology physicians were surveyed. Using a five-point Likert scale, their perceptions of palliative care in ESLD were rated. Their agreement in clinical scenarios that could require palliative care intervention were evaluated. Analyses were conducted to assess any differences by primary role (hepatology vs. palliative care) and length of practice (<10 years vs. 10 years). RESULTS: A total of 123 responses were obtained: 52% from palliative care and 48% from hepatology. The majority (66.7%) work in the field for up to ten years. There was a great consensus in 4 of the 8 clinical scenarios. In scenarios with less consensus, the area of activity and length of practice influence the reliance of physicians on palliative care. Involvement of palliative care in ESLD was considered "rare" by 30% and 61% consider difficult to predict the prognosis. More than 90% support medical training in both areas of activity. CONCLUSION: The current involvement of palliative care is considered low, but there are clinical conditions that reveal a clear consensus and there's a unanimous view of the relevance of training.


Asunto(s)
Enfermedad Hepática en Estado Terminal , Gastroenterología , Cuidados Paliativos , Humanos , Estudios Transversales , Enfermedad Hepática en Estado Terminal/terapia , Masculino , Femenino , Gastroenterólogos , Actitud del Personal de Salud , Persona de Mediana Edad , Adulto , Encuestas y Cuestionarios , Médicos/psicología
14.
Healthcare (Basel) ; 12(4)2024 Feb 09.
Artículo en Inglés | MEDLINE | ID: mdl-38391820

RESUMEN

In mental health and psychiatric care, the use of involuntary psychiatric treatment for people with mental disorders is still a central and contentious issue. The main objective of this scoping review was to map and systematize the literature on ethical issues in clinical decision-making about involuntary psychiatric treatment. Five databases (Embase, PsycINFO, CINAHL, Medline, and Scopus) were searched for articles on this topic. Out of a total of 342 articles found, 35 studies from 14 countries were included based on the selection criteria. The articles were analyzed using the inductive content analysis approach. The following main categories were identified: (1) ethical foundations that guide clinical decision-making; (2) criteria for involuntary psychiatric treatment; (3) gaps, barriers, and risks associated with involuntary psychiatric treatment; (4) strategies used to reduce, replace, and improve the negative impact of involuntary treatment; and (5) evidence-based recommendations. Most of the selected articles discuss the logic underlying involuntary treatment of the mentally ill, exploring ethical principles such as autonomy, beneficence, non-maleficence, or justice, as well as how these should be properly balanced. During the process of involuntary psychiatric admission, there was a notable absence of effective communication and a significant power imbalance that disenfranchised those seeking services. This disparity was further intensified by professionals who often use coercive measures without a clear decision-making rationale and by family members who strongly depend on hospital admission. Due to the pluralistic and polarized nature of opinions regarding legal capacity and the complexity and nuance of involuntary admission, further studies should be context-specific and based on co-production and participatory research.

15.
Children (Basel) ; 11(6)2024 Jun 18.
Artículo en Inglés | MEDLINE | ID: mdl-38929322

RESUMEN

OBJECTIVE: Understand and explore the childbirth experiences of pregnant women living with HIV (PWLWHIV). With the advent of several measures to decrease the intrapartum HIV infection and a strong emphasis on the humanization of childbirth, there is a growing focus on providing positive childbirth experiences for pregnant women. Indeed, a positive childbirth experience is even more important in the group of pregnant women living with HIV (PWLWHIV) as it plays a pivotal role in enhancing the mother's adherence to her postpartum treatment and the newborn's engagement in Infectious Disease services. METHODOLOGY: A scoping review was conducted. Searches were performed on databases, such as MEDLINE, PUBMED, WEB OF SCIENCE and Cochrane Library, using the following keywords: childbirth, birth, parturition, HIV, humaniz*, perceived safety, experience, maternal satisfaction, healthcare professional and midwi*. Articles meeting pre-established criteria were selected within the timeframe of 2013 to 2023 for inclusion in the review. RESULTS: Out of a total of 2,340,391 articles, 4 were chosen based on our defined criteria. Three primary themes emerged from the selected articles: the assessment of childbirth experience quality, vulnerability and autonomy. CONCLUSIONS: The four studies identified had a small sample size and were not adequately conducted with a specific focus on studying the childbirth experience of pregnant women living with HIV (PWLWHIV). This scoping review revealed a gap in the existing literature, indicating a need for further research and clarification in the identified area.

16.
PLoS One ; 19(7): e0304955, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38990936

RESUMEN

This paper has as its theme the autonomy of pregnant women in relation to choosing the method of birth for their child. The objective was to carry out a scoping review to study the literature and evidence of how autonomy is being offered to parturient women. Study design and location: In October 2023, a search was carried out using the terms "pregnant women" AND "delivery" AND "autonomy" in the following databases: PubMed, Web of Science, Scopus, Scielo and LILACS. The search included articles from 2016 to 2023. Of the 179 articles found, 15 met the criteria and were selected for this review. Results: the pregnant woman's autonomy in choosing the method of childbirth is influenced by several factors, such as the obstetrician's recommendation, the medical team, and negative and positive experiences. Thus, when this autonomy is shared with the obstetrician, the obstetrician recommends cesarean section as the safest route, but does not explain the benefits and harms of both routes (vaginal and cesarean section), causing the woman to accept the cesarean section. Midwives recommend vaginal birth because they believe it to be natural and safe and explain the benefits and harms of both methods, respecting the pregnant woman's choice of the method she prefers. Conclusion: women have the fundamental right to choose their method of birth and must be properly guided throughout prenatal care, whether by an obstetrician or a midwife, about the options, risks and benefits of each method of childbirth, respecting the ethical principle of beneficence.


Asunto(s)
Cesárea , Parto Obstétrico , Parto , Autonomía Personal , Mujeres Embarazadas , Humanos , Femenino , Embarazo , Mujeres Embarazadas/psicología , Parto Obstétrico/métodos , Conducta de Elección
17.
Nurs Rep ; 13(4): 1477-1485, 2023 Oct 23.
Artículo en Inglés | MEDLINE | ID: mdl-37873831

RESUMEN

OBJECTIVES: This article focuses on exploring the evolution of palliative care in Portugal. Ten years after the approval of its Basic Law, the aim was to investigate the quality of the path followed and the guidelines that could promote its development. Thus, this study sought to identify (a) the goals of the current members of parliament concerning palliative care, (b) the major priorities that should guide the development of palliative care in the coming decade, (c) the facilitating or hindering factors to accelerating the process, and (d) to propose consensually agreed measures for the integral development of palliative care within the health system. METHODS: The qualitative data analysis was performed through the reading of the literature and interviews conducted via Zoom with several intentionally chosen participants. The data extracted from the previous studies were analyzed in a focus group. The NVivo® 10 was used for the data processing and categorization. RESULTS: Three key themes emerged concerning the current status of palliative care: the policymakers, the health professionals, and the society. This first line of structuring is explained by a second set of categories, namely, (a) the knowledge about palliative care; and (b) palliative care organization from the policymakers' perspective. In the health professionals' domain: (a) knowledge about palliative care, (b) clinical training, and (c) medical specialty. Finally, in society: (a) knowledge about palliative care. SIGNIFICANCE OF THE RESULTS: Advancing general education, increasing the qualitative training for different health professionals, reformulating the laws supporting them, promoting the flexibility of the implementation methodologies, and establishing a medical specialty are crucial to achieving the proposed goal. This study was not registered.

18.
Healthcare (Basel) ; 11(20)2023 Oct 18.
Artículo en Inglés | MEDLINE | ID: mdl-37893829

RESUMEN

(1) Background: Advance directives are an expression of a person's autonomy regarding end-of-life care. Several studies have shown that the level of completion in countries where advance directives are legalised is low. To better understand this phenomenon, it is important to know the perceptions, attitudes, and knowledge that the population has about this instrument. The aim of this article was to explore a population's perceptions and/or attitudes and/or knowledge toward advance directives. (2) Methods: A search was conducted in March 2023 in the ISI Web of Knowledge, Scopus, and PubMed databases using the following keywords: "advance care directives", "advance care planning", "perceptions", "attitudes", and "knowledge". Two hundred and twenty-four (224) articles were identified, and thirteen (13) were included for analysis. (3) Results: The selected articles point to a low level of knowledge toward advance directives: they recognise a strong positive attitude of the population toward the implementation of advance directives but a low level of achievement. (4) Conclusions: Studies on perceptions/attitudes/knowledge toward advance directives are important to understand the real needs of the population regarding this issue and to implement more adequate and effective promotion and dissemination measures.

19.
Ann Palliat Med ; 12(4): 791-802, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37038064

RESUMEN

BACKGROUND: Recognizing the need for palliative care (PC) and referral to PC teams improves patients' quality of life. However, in patients with moderate/severe clinical complexity, early recognition of the need for PC may not correspond to referral to specialized PC services. The definition for clinical complexity is still underexplored, as well as the instruments available to assess complexity. This scoping review aims to gather relevant information on the definition of clinical complexity in PC, as well as on the instruments used to objectively assess complexity. METHODS: According to the methodology of a Scoping Review, the keywords: "palliative care", "hospitalization criteria", "complexity criteria", "complexity assessment" and "clinical complexity", were searched in PubMed, Scopus, Cochrane, and b-on databases, during April 2022, for relevant information on the definition and/or approach and/or protocols related to clinical complexity in patients followed in PC, or on the instruments used to assess it, regardless of study design, the language, or year of publication. RESULTS: From the 626 references found, 15 studies were included in the review. According to these studies, complexity may be organized/defined into 3, 4, or 6 domains, generally including the patient, the family, the health system, and the socio-cultural context. Of the 13 instruments mentioned for the objective assessment of complexity, the HexCom, IDC-Pal, and the recent ID-PALL seem to offer the broadest determinations of complexity. CONCLUSIONS: Complexity is a dynamic process, which reflects the reality of patients and families, and patients, families, and health professionals' perceptions, and so it must be systematically adjusted to the stage of the disease. The definition of complexity and the development and use of suitable instruments can help to identify, assess, and improve patients' quality of life, while supporting their family across the grieving process. Yet, this may not always be summarized in a quantitative value by easy-to-use instruments, highlighting the role of PC interdisciplinary teams.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Calidad de Vida , Humanos , Cuidados Paliativos , Atención al Paciente , Derivación y Consulta
20.
Artículo en Inglés | MEDLINE | ID: mdl-36833934

RESUMEN

BACKGROUND: Advance care planning (ACP) and goals of care discussion involve the exploration of what is most important to a person to prepare for health-care decision making. Despite their well-established benefits, they are still not frequently performed in clinical oncology practice. This study aims to describe the barriers to discussion goals of care with oncology patients from the perspective of medical residents. METHODS: This cross-sectional and qualitative study applied the "Decide-Oncology" questionnaire, adapted to Portuguese language, to assess barriers to goals of care discussion among medical residents from three university hospitals in Brazil. Residents were asked to rank the importance of various barriers to discuss goals of care (ranging from 1-extremely unimportant to 7-extremely important). RESULTS: Twenty-nine residents answered the questionnaire (30.9%). The most reported barriers were related to patients and their families' difficulty in understanding and accepting the diagnosis and the prognosis as well as patients' desire to receive full active treatment. Furthermore, the physician and external factors such as lack of training and lack of time to have these conversations were also very important barriers. The identification of the key barriers that limit the discussion of ACP and early palliative care referrals can certainly help to prioritize the next steps for future studies aimed at improving ACP and goals of care discussions.


Asunto(s)
Planificación Anticipada de Atención , Internado y Residencia , Neoplasias , Humanos , Estudios Transversales , Comunicación , Cuidados Paliativos
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