Assuntos
Papel do Médico , Relações Profissional-Paciente/ética , Suicídio Assistido , Doente Terminal , Comportamento de Escolha , Tomada de Decisões , Humanos , Serviços Jurídicos , Psicologia , Psicologia Social , Suicídio Assistido/ética , Suicídio Assistido/legislação & jurisprudência , Suicídio Assistido/psicologia , Doente Terminal/legislação & jurisprudência , Doente Terminal/psicologiaAssuntos
Relações Profissional-Paciente/ética , Suicídio Assistido , Doente Terminal , Regulamentação Governamental , Humanos , Psicologia , Psicologia Social , Percepção Social , Suicídio Assistido/ética , Suicídio Assistido/legislação & jurisprudência , Suicídio Assistido/psicologia , Doente Terminal/legislação & jurisprudência , Doente Terminal/psicologiaRESUMO
Small animal veterinarians frequently have to manage conflicting interests. Beside the key consideration of the patient's interests, small animal veterinarians are often challenged to consider not only client's emotional needs, but also their own personal aspirations to provide quality patient care and to make a good living as a professional. Further, veterinarians have an interest in continuous professional development and the use of the newest treatments, which may influence their decision-making process. Based on published work, we hypothesize the existence of four decision ethics orientations that veterinarians can use to manage potentially conflicting concerns. These are: the patient-focused, the client-empathetic, the client-devolved and the development-oriented decision ethics orientations. We surveyed small animal veterinarians in Austria, Denmark, and the UK using a questionnaire (N = 648), and successfully identified the four decision ethics orientations in all three countries. The patient-focused and client-empathetic decision ethics orientations are salient in all countries, whereas Danish and UK veterinarians are slightly more client-empathetic and client-devolved compared to their Austrian colleagues. Across countries our findings show that experienced and older veterinarians tend to be more client-empathetic. Younger and less experienced professionals are more development-oriented compared to their older and more experienced colleagues. In contrast to other studies investigating ethical issues in small animal practice, we found no evidence that gender plays a decisive role in the tendency towards any decision ethics orientation. We also show that veterinarians with a higher client-empathetic orientation and development-orientation more often discuss the possibility of health insurance with clients who do not have it. The present study provides a first empirical insight into how veterinarians manage challenging expectations and ethical concerns as part of decision making in modern small animal practice.
Assuntos
Tomada de Decisões/ética , Relações Profissional-Paciente/ética , Médicos Veterinários , Medicina Veterinária/ética , Animais , Áustria , Dinamarca , Humanos , Inquéritos e Questionários , Reino UnidoRESUMO
BACKGROUND: There has been a steady increase in the use of electronic media and instant messaging among healthcare professionals, where it has been almost universally adopted in the workplace. The use of WhatsApp and its perceived benefits in healthcare have been extensively studied; however, there are concerns regarding the potential for ethical breaches in confidentiality through shared electronic patient information. OBJECTIVES: To identify the usage characteristics and incidence of shared patient information with WhatsApp use in a team of medical doctors in an unobserved and unregulated setting. METHODS: We conducted a retrospective cross-sectional content analysis of WhatsApp messages (n=3 340) among a team of 20 doctors in a South African district hospital over 6 months. All messages found within this time period were allocated unique identifiers. The text and image messages were thematically grouped into four categories, i.e. clinical care, resource allocation, social and administrative. Messages that contained patient-identifying information were included in the analysis. RESULTS: Of a total of 3 340 messages sent, 220 (6.6%) contained patient-identifying information. Of these, 109 (3.3%) contained non-anonymised patient information, while in 111 (3.3%) messages, the information was anonymised. The likelihood of sharing patient identifiers was proportionally much higher in shared images (odds ratio (OR) 5.1; 95% confidence interval (CI) 3.2 - 8.2; p<0.0001) compared with text messages, and in messages that related to clinical care (OR 9.3; 95% CI 2.2 - 38.8; p=0.0023) compared with those sent for resource allocation, and social or administrative purposes. CONCLUSIONS: Non-anonymised patient identifiers were found in 3.3% of messages, constituting the potential for breaching patient confidentiality. While WhatsApp groups have significant utility in co-ordinating aspects of clinical care, resource allocation, as well as social and administrative functions, the safe use of WhatsApp should be promoted to ensure that patient confidentiality is maintained.
Assuntos
Confidencialidade , Relações Interprofissionais/ética , Equipe de Assistência ao Paciente/organização & administração , Relações Profissional-Paciente/ética , Envio de Mensagens de Texto/estatística & dados numéricos , Estudos Transversais , Ética Médica , Hospitais de Distrito , Humanos , Estudos Retrospectivos , África do SulRESUMO
BACKGROUND: Factors influencing the quality of end-of-life communication are relevant to improving end-of-life care. We assessed the quality of end-of-life communication and influencing factors in 2 intensive care unit (ICU) cohorts at high risk of death: patients living in nursing homes and those on extracorporeal membrane oxygenation (ECMO). METHODS: This retrospective cohort study included admissions to 4 ICUs in Winnipeg, Manitoba, from 2000 to 2017. We identified cohorts and influencing factors from the Winnipeg ICU database and by manual chart review. We assessed quality of end-of-life communication using 18 validated, binary quality indicators to calculate a weighted, scaled, composite score (range 0-100). We used median regression to identify factors associated with the composite score. RESULTS: The ECMO cohort (n = 109) was younger than the nursing home cohort (n = 230), with longer hospital stays and higher disease severity. Mean composite scores of end-of-life communication were extremely low in both cohorts (mean 48.5 [standard error of the mean (SEM) 1.7] for the nursing home cohort, 49.1 [SEM 2.5] for the ECMO cohort). Patient characteristics associated with higher median composite scores were older age (5.0 per decade, 95% confidence interval [CI] 2.1-7.8) and lower (worse) Glasgow Coma Scale (GCS) scores (1.8 per GCS point, 95% CI 0.5-3.2). The median composite score rose significantly over time (1.7 per year, 95% CI 0.5-2.8). INTERPRETATION: The quality of end-of-life communication in ICUs is poor, and factors associated with better prognosis are also associated with worse communication. Direct and early communication should occur with all patients in the ICU and their surrogates, not just those who are believed most likely to die.
Assuntos
Barreiras de Comunicação , Estado Terminal , Morte , Relações Profissional-Paciente/ética , Qualidade de Vida , Assistência Terminal , Revelação da Verdade/ética , Planejamento Antecipado de Cuidados/ética , Idoso , Canadá/epidemiologia , Estado Terminal/mortalidade , Estado Terminal/psicologia , Oxigenação por Membrana Extracorpórea/métodos , Oxigenação por Membrana Extracorpórea/mortalidade , Oxigenação por Membrana Extracorpórea/psicologia , Feminino , Humanos , Unidades de Terapia Intensiva/ética , Unidades de Terapia Intensiva/normas , Unidades de Terapia Intensiva/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Casas de Saúde/ética , Casas de Saúde/estatística & dados numéricos , Prognóstico , Qualidade da Assistência à Saúde/organização & administração , Qualidade da Assistência à Saúde/normas , Medição de Risco , Índice de Gravidade de Doença , Assistência Terminal/métodos , Assistência Terminal/psicologiaAssuntos
Pesquisa Biomédica , COVID-19 , Confiabilidade dos Dados , Publicações/ética , Publicações/normas , Acesso à Informação , Pesquisa Biomédica/história , Pesquisa Biomédica/normas , Pesquisa Biomédica/estatística & dados numéricos , Pesquisa Biomédica/tendências , COVID-19/epidemiologia , COVID-19/terapia , COVID-19/virologia , Promoção da Saúde/história , Promoção da Saúde/métodos , Promoção da Saúde/normas , Promoção da Saúde/tendências , História do Século XXI , Humanos , Pandemias , Educação de Pacientes como Assunto/história , Educação de Pacientes como Assunto/normas , Educação de Pacientes como Assunto/tendências , Revisão da Pesquisa por Pares/ética , Revisão da Pesquisa por Pares/métodos , Revisão da Pesquisa por Pares/normas , Revisão da Pesquisa por Pares/tendências , Prática Profissional/ética , Prática Profissional/normas , Prática Profissional/tendências , Relações Profissional-Paciente/ética , Publicações/história , Publicações/tendências , SARS-CoV-2/patogenicidade , SARS-CoV-2/fisiologia , Má Conduta Científica/ética , Má Conduta Científica/estatística & dados numéricos , Má Conduta Científica/tendências , Viés de SeleçãoRESUMO
ABSTRACT: Fundamental quandaries of clinical and biomedical ethics for health care professionals, committees, and systems have been raised into stark relief by the COVID-19 pandemic. The nature and extent of critical issues raised by this ongoing crisis, including challenging ethical dilemmas for the health care profession, is likely to have an indelible impact on the professional identity formation (PIF) of learners and practitioners across the trajectory of the professional lifecycle. The lifelong process of PIF for health care practitioners, from learner through independent practice, is supported in medical education by intentional reflection, relationships within community of practice include guidance from mentoring, as well as resilience, both emotional and moral. We consider how grappling with ethical dilemmas related to the COVID-19 pandemic can challenge, inform, and even potentially transform the PIF process, thereby supporting development of a morally resilient, humanistic professional identity in health care trainees and health care professionals.
Assuntos
Atitude do Pessoal de Saúde , COVID-19/epidemiologia , Pessoal de Saúde/ética , Relações Profissional-Paciente/ética , Autoimagem , Ética Médica , Pessoal de Saúde/psicologia , Humanos , Princípios Morais , Competência Profissional , Identificação SocialRESUMO
Thalassemias are among the most frequent genetic disorders worldwide. They are an important social and economic strain in high-risk populations. The benefit of ß-thalassemia screening programs is growing evident but the capacity to diagnose fetal ß-thalassemia exceeds the treatment possibilities and even when treatment before birth becomes feasible, difficult decisions about the relative risks will remain. This paper can be of practical and ethically justified aid when counseling women about screening, diagnosis, and treatment of ß-thalassemia. It takes in consideration various social challenges, medical issues such as antenatal screening, preimplantation genetic diagnosis, prenatal diagnosis, non-invasive prenatal testing and prenatal therapy. We also describe the Sardinian experience in applying and promoting high-risk population screening and diagnosis programs and future trends in the management of ß-thalassemia.
Assuntos
Aceitação pelo Paciente de Cuidados de Saúde , Diagnóstico Pré-Natal/ética , Relações Profissional-Paciente/ética , Determinantes Sociais da Saúde , Talassemia beta/diagnóstico , Aconselhamento Diretivo/ética , Feminino , Terapias Fetais/ética , Terapias Fetais/métodos , Testes Genéticos/ética , Humanos , Itália , Participação do Paciente , Gravidez , Diagnóstico Pré-Natal/métodos , Risco , Fatores Socioeconômicos , Talassemia beta/genética , Talassemia beta/terapiaRESUMO
BACKGROUND: Respectful maternal and newborn care (RMNC) is an important component of high-quality care but progress is impeded by critical measurement gaps for women and newborns. The Every Newborn Birth Indicators Research Tracking in Hospitals (EN-BIRTH) study was an observational study with mixed methods assessing measurement validity for coverage and quality of maternal and newborn indicators. This paper reports results regarding the measurement of respectful care for women and newborns. METHODS: At one EN-BIRTH study site in Pokhara, Nepal, we included additional questions during exit-survey interviews with women about their experiences (July 2017-July 2018). The questionnaire was based on seven mistreatment typologies: Physical; Sexual; or Verbal abuse; Stigma/discrimination; Failure to meet professional standards of care; Poor rapport between women and providers; and Health care denied due to inability to pay. We calculated associations between these typologies and potential determinants of health - ethnicity, age, sex, mode of birth - as possible predictors for reporting poor care. RESULTS: Among 4296 women interviewed, none reported physical, sexual, or verbal abuse. 15.7% of women were dissatisfied with privacy, and 13.0% of women reported their birth experience did not meet their religious and cultural needs. In descriptive analysis, adjusted odds ratios and multivariate analysis showed primiparous women were less likely to report respectful care (ß = 0.23, p-value < 0.0001). Women from Madeshi (a disadvantaged ethnic group) were more likely to report poor care (ß = - 0.34; p-value 0.037) than women identifying as Chettri/Brahmin. Women who had caesarean section were less likely to report poor care during childbirth (ß = - 0.42; p-value < 0.0001) than women with a vaginal birth. However, babies born by caesarean had a 98% decrease in the odds (aOR = 0.02, 95% CI, 0.01-0.05) of receiving skin-to-skin contact than those with vaginal births. CONCLUSIONS: Measurement of respectful care at exit interview after hospital birth is challenging, and women generally reported 100% respectful care for themselves and their baby. Specific questions, with stratification by mode of birth, women's age and ethnicity, are important to identify those mistreated during care and to prioritise action. More research is needed to develop evidence-based measures to track experience of care, including zero separation for the mother-newborn pair, and to improve monitoring.
Assuntos
Parto Obstétrico/estatística & dados numéricos , Hospitais/estatística & dados numéricos , Assistência Perinatal/estatística & dados numéricos , Indicadores de Qualidade em Assistência à Saúde/estatística & dados numéricos , Determinantes Sociais da Saúde/estatística & dados numéricos , Adulto , Atitude do Pessoal de Saúde , Parto Obstétrico/ética , Feminino , Hospitais/ética , Humanos , Recém-Nascido , Nepal , Assistência Perinatal/ética , Assistência Perinatal/organização & administração , Gravidez , Relações Profissional-Paciente/ética , Pesquisa Qualitativa , Respeito , Estigma Social , Inquéritos e Questionários/estatística & dados numéricos , Adulto JovemAssuntos
COVID-19 , Pessoal de Saúde/psicologia , Transtornos Mentais , Saúde Mental , Estresse Ocupacional/prevenção & controle , Relações Profissional-Paciente/ética , Estigma Social , Atitude do Pessoal de Saúde , COVID-19/epidemiologia , COVID-19/psicologia , COVID-19/virologia , Humanos , Transtornos Mentais/epidemiologia , Transtornos Mentais/psicologia , Saúde Mental/ética , Saúde Mental/tendências , Serviços de Saúde Mental/ética , Serviços de Saúde Mental/normas , Aceitação pelo Paciente de Cuidados de Saúde/psicologiaRESUMO
BACKGROUND: In British Columbia (BC), Canada, clinicians are responsible for giving involuntary psychiatric patients rights information upon admission. Yet an investigation by the BC Office of the Ombudsperson found that clinicians are not always fulfilling this responsibility. The Ombudsperson recommended that the provincial government fund an independent body to give rights advice to patients. METHODS: To understand how clinicians feel about this recommendation, focus groups of clinicians who may give psychiatric patients rights information (n = 81) were conducted in Vancouver, BC, to probe their attitudes toward independent rights advisors. The focus group transcripts were thematically analyzed. RESULTS: Most clinicians believe that giving rights information is within their scope of practice, although some acknowledge that it poses a conflict of interest when the patient wishes to challenge the treatment team's decisions. Participants' chief concerns about an independent rights-advice service were that (a) patients may experience a delay in receiving their rights information, (b) integrating rights advisors into the workflow would complicate an already chaotic admission process, and (c) more patients would be counselled to challenge their hospitalization, leading to an increased administrative workload for clinical staff. However, many participants believed that independent rights advisors would be a positive addition to the admission process, both allowing clinicians to focus on treatment and serving as a source of rights-related information. CONCLUSIONS: Participants were generally amenable to an independent rights-advice service, suggesting that the introduction of rights advisors need not result in an adversarial relationship between treatment team and patient, as opponents of the proposal fear. Clearly distinguishing between basic rights information and in-depth rights advice could address several of the clinicians' concerns about the role that independent rights advisors would play in the involuntary admission process. Clinicians' and other stakeholders' concerns should be considered as the province develops its rights-advice service.
Assuntos
Pessoal de Saúde/psicologia , Pessoas Mentalmente Doentes/legislação & jurisprudência , Relações Profissional-Paciente/ética , Adulto , Atitude do Pessoal de Saúde , Colúmbia Britânica , Feminino , Grupos Focais , Pessoal de Saúde/ética , Pessoal de Saúde/legislação & jurisprudência , Humanos , Internação Involuntária/ética , Internação Involuntária/legislação & jurisprudência , Masculino , Pessoas Mentalmente Doentes/psicologia , Pessoa de Meia-Idade , Direitos do Paciente/ética , Direitos do Paciente/legislação & jurisprudência , Pacientes , Pesquisa QualitativaRESUMO
A pediatric case study showed that genetic testing to obtain a diagnosis becomes increasingly complex. Expectant parents found out prenatally, with an ultrasound that their child has skeletal abnormalities. The search for a diagnosis that followed after this test result shows how complex this can be. This case study furthermore shows that professionals might have aims for testing which differ from parents' wishes. While professionals in this case wanted to have a diagnosis in an efficient way, the parents involved in this case did not want further testing, supported by their religious believes. As they explained, they will accept their child unconditionally. But when the health problems of their daughter become more severe they accepted testing. This difference in opinions about genetic testing pleas for pre-test counselling which focusses on exploring parental values. Discussing values contributes to a satisfactory diagnostic trajectory and follow-up.
Assuntos
Aconselhamento Genético/psicologia , Testes Genéticos/ética , Pais/psicologia , Relações Profissional-Paciente/ética , Valores Sociais , Atitude , Criança , Feminino , Humanos , MasculinoAssuntos
Teste para COVID-19/estatística & dados numéricos , COVID-19/psicologia , Relações Profissional-Paciente/ética , Isolamento Social/psicologia , Estudantes de Medicina/psicologia , Atitude do Pessoal de Saúde , COVID-19/epidemiologia , Coragem/ética , Feminino , Trabalhadores Voluntários de Hospital/ética , Trabalhadores Voluntários de Hospital/organização & administração , Humanos , Masculino , Michigan/epidemiologia , Apoio SocialRESUMO
BACKGROUND: Psoriasis is a long-term skin condition associated with considerable life impairment. Extensive literature regarding the needs of patients with psoriasis is not translated into clinical practice. AIM: To explore and communicate the experience of living with psoriasis and interacting with healthcare professionals (HCPs). METHODS: In total, 21 patients attending a tertiary adult psoriasis service were interviewed individually. Interviews were recorded and transcribed, then the transcripts were examined and thematic analyses and qualitative content analysis performed. The results were communicated via a short film. RESULTS: Three key themes were identified: comparison with cancer, misalignment of response with need and fear of social exclusion. Cancer comparison subthemes included poorer services, lack of awareness and trivialization of psoriasis compared with cancer. Misalignment subthemes related to lack of knowledge and inappropriate response of HCPs and society towards psoriasis. Fear of social exclusion subthemes included erroneous belief of psoriasis being contagious and the expectation of rejection. Consequent emotions of fear, shame and anxiety resulted in avoidant behaviours, which perpetuated social exclusion. Participants valued active listening, shared decision-making and communication of hope regarding treatment by HCPs. CONCLUSION: Despite extensive research into psoriasis and the availability of effective treatment for many patients, people with psoriasis live unnecessarily impaired lives and have unsatisfactory healthcare experiences. Storytelling techniques provide a method to communicate scientific information in a way that may drive change in delivery of healthcare and improve the lives of patients.
Assuntos
Terapia Comportamental/métodos , Neoplasias/psicologia , Psoríase/psicologia , Psoríase/terapia , Pele/patologia , Adulto , Ansiedade/psicologia , Atitude do Pessoal de Saúde , Aprendizagem da Esquiva , Comunicação , Tomada de Decisão Compartilhada , Estudos de Avaliação como Assunto , Feminino , Pessoal de Saúde/psicologia , Humanos , Entrevistas como Assunto , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Relações Profissional-Paciente/ética , Qualidade de Vida/psicologia , Isolamento Social/psicologia , Teste de Apercepção Temática/estatística & dados numéricosRESUMO
While the American Physical Therapy Association has upheld a code of ethics since 1935, the philosophical underpinnings of physical therapist practice have yet to be robustly explicated. Theoretical work in the field of philosophy of medicine can be engaged to study physical therapist practice. Modifying the phenomenological and teleological framework of Edmund Pellegrino, a physician and prominent bioethicist, the purpose of this theoretical paper is to particularize Pellegrino's philosophy of medicine to construct an internal morality of physical therapy. Acknowledging that the internal morality of health care professions is founded in the relationship between a patient and a health care professional, this paper analyzes the nature and telos, or end, of physical therapy through 3 phenomena of physical therapy-the fact of disability, the act of profession, and the act of physical therapy. This paper claims that, rather than medicine's clinical truth of a good treatment decision, physical therapy's clinical truth is a good process that capacitates patients. This relational approach to an internal morality robustly underpins a philosophy and ethics of physical therapy.
Assuntos
Princípios Morais , Modalidades de Fisioterapia/ética , Relações Profissional-Paciente/ética , HumanosRESUMO
As endocrinologists we have focused on biological contributors to disparities in diabetes, obesity and other endocrine disorders. Given that diabetes is an exemplar health disparity condition, we, as a specialty, are also positioned to view the contributing factors and solutions more broadly. This will give us agency in contributing to health system, public health, and policy-level interventions to address the structural and institutional racism embedded in our medical and social systems. A history of unconsented medical and research experimentation on vulnerable groups and perpetuation of eugenics theory in the early 20th century have resulted in residual health care provider biases toward minority patients and patient distrust of medical systems, leading to poor quality of care. Historical discriminatory housing and lending policies resulted in racial residential segregation and neighborhoods with inadequate housing, healthy food access, and educational resources, setting the foundation for the social determinants of health (SDOH) contributing to present-day disparities. To reduce these disparities we need to ensure our health systems are implementing the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care to promote health equity. Because of racial biases inherent in our medical systems due to historical unethical practices in minority communities, health care provider training should incorporate awareness of unconscious bias, antiracism, and the value of diversity. Finally, we must also address poverty-related SDOH (eg, food and housing insecurity) by integrating social needs into medical care and using our voices to advocate for social policies that redress SDOH and restore environmental justice.
Assuntos
Diabetes Mellitus/terapia , Endocrinologia , Equidade em Saúde , Racismo , Diabetes Mellitus/epidemiologia , Endocrinologia/ética , Endocrinologia/organização & administração , Endocrinologia/estatística & dados numéricos , Pessoal de Saúde/ética , Disparidades nos Níveis de Saúde , Disparidades em Assistência à Saúde/estatística & dados numéricos , Humanos , Acesso à Internet/estatística & dados numéricos , Relações Profissional-Paciente/ética , Racismo/estatística & dados numéricos , Determinantes Sociais da Saúde , Telemedicina/ética , Telemedicina/organização & administração , Telemedicina/estatística & dados numéricos , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: To avoid harming or exploiting a client, sexual and non-sexual dual relationship is generally considered as unacceptable in the psychotherapeutic relationship. However, little is known about what therapists themselves constitute as (un)acceptable intimate and informal behaviour (IIB). METHODS: A survey among psychotherapists in Flanders (Belgium) was conducted. Opinions about the acceptability of IIB were asked. Based on these opinions attitude groups could be determined. RESULTS: In total, 786 therapists completed and returned the questionnaire (response rate: 39.8%). Therapists could be divided into three attitude groups. Almost half of the therapists belonged to the 'rather restrictive group', a third to the 'rather socially permissive group' and a fifth to the 'rather sexually permissive group'. Being categorised as 'rather sexually permissive' is predominantly related to being male and non-heterosexual, whereas being 'rather restrictive' or 'rather socially permissive' is mainly due to the type of psychotherapy training. The 'rather sexually permissive' therapists more often found a client sexually attractive during the last year and fantasised more often about a romantic relationship with a client, but they did not more often started a sexual relationship. CONCLUSIONS: Most therapists in Flanders are rather restrictive in their attitude to IIB, pointing to a high sense of morality. Having a rather sexually permissive attitude is predominantly related to more personal characteristics of the therapists, but these therapists did not start a sexual relationship more often.
Assuntos
Atitude do Pessoal de Saúde , Princípios Morais , Relações Profissional-Paciente/ética , Psicoterapeutas/psicologia , Comportamento Sexual , Adulto , Bélgica , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Autorrelato , Fatores Sexuais , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To explore fetal medicine specialists' experiences of caring for parents following a diagnosis of fatal fetal anomaly (FFA) during the implementation of termination of pregnancy (TOP) for FFA for the first time. DESIGN: Qualitative study. SETTING: Fetal medicine units in the Republic of Ireland. POPULATION: Ten fetal medicine specialists from five of the six fetal medicine units. METHODS: nvivo 12 assisted in the thematic analysis of semi-structured in-depth face-to-face interviews. MAIN OUTCOME MEASURES: Fetal medicine specialists' experiences of prenatal diagnosis and holistic management of pregnancies complicated by FFA. RESULTS: Four themes were identified: 'not fatal enough', 'interactions with colleagues', 'supporting pregnant women' and 'internal conflict and emotional challenges'. Fetal medicine specialists feared getting an FFA diagnosis incorrect because of media scrutiny and criminal liability associated with the TOP for FFA legislation. Challenges with the ambiguous and 'restrictive' legislation were identified that 'ostracised' severe anomalies. Teamwork was essential to facilitate opportunities for learning and peer support; however, conflict with colleagues was experienced regarding the diagnosis of FFA, the provision of feticide and palliative care to infants born alive following TOP for FFA. Participants reported challenges implementing TOP for FFA, including the absence of institutional support and 'stretched' resources. Fetal medicine specialists experienced internal conflict and a psychological burden providing TOP for FFA, but did so to 'provide full care for women'. CONCLUSIONS: Our study identified challenges regarding the suitability of the Irish legislation for TOP for FFA and its rapid introduction into clinical practice. It illustrates the importance of institutional and peer support, as well as the need for supportive management, in the provision of a new service. TWEETABLE ABSTRACT: The implementation of termination services for fatal fetal anomaly is complex and requires institutional support.
Assuntos
Aborto Eugênico , Atitude do Pessoal de Saúde , Anormalidades Congênitas , Perinatologia , Cuidado Pré-Natal , Relações Profissional-Paciente , Aborto Eugênico/ética , Aborto Eugênico/psicologia , Feminino , Humanos , Relações Interprofissionais , Entrevistas como Assunto , Irlanda , Perinatologia/ética , Gravidez , Cuidado Pré-Natal/ética , Cuidado Pré-Natal/organização & administração , Cuidado Pré-Natal/psicologia , Relações Profissional-Paciente/ética , Pesquisa QualitativaAssuntos
Doença de Hodgkin/história , Consentimento Informado por Menores/história , Consentimento dos Pais/história , Participação do Paciente/história , Recusa do Paciente ao Tratamento/história , Adolescente , Connecticut , Dissidências e Disputas/história , Dissidências e Disputas/legislação & jurisprudência , Feminino , História do Século XXI , Doença de Hodgkin/terapia , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/legislação & jurisprudência , Consentimento dos Pais/ética , Consentimento dos Pais/legislação & jurisprudência , Participação do Paciente/legislação & jurisprudência , Relações Profissional-Família/ética , Relações Profissional-Paciente/ética , Recusa do Paciente ao Tratamento/ética , Recusa do Paciente ao Tratamento/legislação & jurisprudência , Adulto JovemRESUMO
The question of the sexuality of people with a disability in an institution touches on two sensitive aspects: sexuality, between taboo and unknown, and disability-related particularities. Within the microsociety of an institution, the protocols, daily living rules and therapeutic framework guide institutional life, and caregivers are sometimes helpless. An ethical perspective can help professionals support people with a mental disability with regard to their emotional and sexual life.