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1.
AANA J ; 89(6): 501-508, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34809755

RESUMO

This descriptive exploratory study sought to gain insight about where caregivers of children with Down syndrome find information regarding anesthesia and the experiences of these caregivers when their child had to receive an anesthetic. We hypothesized that the Internet and social media were major sources of information. We recruited parents/caregivers via Down syndrome organizational websites and social media. A total of 515 participants completed a 24-question survey. Descriptive analysis and content analysis were used to analyze the data. Nearly all participants (96%) indicated their child had received an anesthetic. Reportedly, 41.2% had never searched the Internet about anesthesia. Responses indicated that caregivers obtained information mostly from Facebook groups and local websites and groups. Respondents believed the information was helpful (88.2%) but considered it to be only somewhat trustworthy (73.3%). Most (82%) indicated they would prefer a face-to-face conversation with the anesthesia provider. Among participants, 45% reported having a positive experience with anesthesia, 25% reported a negative experience, and 30% responded neither. Negative experiences involved children who had symptoms of emergence delirium and regression or when the caregiver perceived there were unexpected complications. These results are intended to be used to develop a checklist for caregivers when speaking to anesthesia providers.


Assuntos
Anestesia , Síndrome de Down , Cuidadores , Criança , Humanos , Tutores Legais , Pais
2.
Pediatrics ; 148(5)2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34711677

RESUMO

Adolescents and young adults living with intellectual disability (ID) have made significant advancements integrating into multiple aspects of western society, but there has been less progress with regards to sexual health. While advocating for individuals with ID to live life to the fullest, pediatricians have practical concerns regarding the ability to consent to sex as well as avoid coercion and manipulation in sexual encounters. This has led to tension between supporting the autonomy of a patient with ID while protecting them from harm. We present a case of a young adult with moderate ID who is engaging in a sexual relationship with her boyfriend without parental knowledge. The pediatrician must decide the most appropriate course of action to support the patient's autonomy but also ensure that the patient is a willing participant and understands the risks of engaging in sexual activity. This case highlights 4 main themes: (1) practical concerns when approaching sexual health in the adolescent with ID, (2) advocating for the rights of those with ID to live life to the fullest, (3) the critical inclusion of individuals with ID in decisions directly affecting them and their peer group, and (4) decision-making capacity and respect for autonomy in individuals with ID. This case highlights the delicate balance providers face when providing care to adolescents and young adults with ID: supporting autonomy to make decisions while reducing harm to a vulnerable population.


Assuntos
Deficiência Intelectual , Pediatras , Autonomia Pessoal , Comportamento Sexual , Adolescente , Abuso Sexual na Infância , Anticoncepção , Tomada de Decisões , Feminino , Humanos , Relações Interpessoais , Tutores Legais/legislação & jurisprudência , Participação do Paciente , Direitos do Paciente , Comunicação Persuasiva , Risco , Saúde Sexual , Sexualidade
3.
J Acad Consult Liaison Psychiatry ; 62(5): 538-545, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34489063

RESUMO

BACKGROUND: The "unbefriended" patient does not demonstrate capacity to make their own medical decisions, does not have an advance directive, and lacks a surrogate decision maker. For these patients without a designated health care proxy, hospitals may need to petition for public guardianship, a notoriously arduous process with undefined impact on hospital resources. OBJECTIVE: The objective of this study was to describe the characteristics, system needs, and financial impact of unrepresented inpatients in an academic, tertiary care, urban medical center. METHODS: The Northwestern Memorial Hospital Quality and Patient Safety Committee approved a systematic needs assessment. Retrospective chart review was conducted for patients admitted from September 1, 2013 to August 31, 2019 for whom the hospital petitioned for a public guardian. RESULTS: From fiscal years 2014 to 2019, 156 patients were petitioned for public guardianship. The number of cases rose sequentially from 8 in 2014 to 44 in 2019. The 2 most common conditions that impaired capacity were neurocognitive disorders (56.4%) and psychotic disorders (17.9%). The psychiatry consultation service consulted 71.2% of cases vs 71.1%. There were 2347 medically unnecessary hospital days related to the pursuit of guardianship, and the associated costs to the health system were estimated to be more than $5.8 million. CONCLUSIONS: The number of unbefriended patients who lacked decisional capacity necessitating public guardianship dramatically escalated over 5 years. These patients had high rates of homelessness and psychiatric illness, consistent with previous research. Further investigation is needed to understand and address the needs of this vulnerable population.


Assuntos
Tomada de Decisões , Tutores Legais , Hospitais , Humanos , Determinação de Necessidades de Cuidados de Saúde , Estudos Retrospectivos
4.
PLoS One ; 16(9): e0256689, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34525101

RESUMO

BACKGROUND: Vulnerable groups, e.g. persons with mental illness, neurological deficits or dementia, are often excluded as participants from research projects because obtaining informed consent can be difficult and tedious. This may have the consequence that vulnerable groups benefit less from medical progress. Vulnerable persons are often supported by a legal guardian in one or more demands of their daily life. We examined the attitudes of legal guardians and legally supervised persons towards medical research and the conditions and motivations to participate in studies. METHODS: We conducted a cross-sectional study with standardized surveys of legal guardians and legally supervised persons. Two separate questionnaires were developed for the legal guardians and the supervised persons to asses previous experiences with research projects and the reasons for participation or non-participation. The legal guardians were recruited through various guardianship organizations. The supervised persons were recruited through their legal guardian and from a previous study among psychiatric patients. The data were analysed descriptively. RESULTS: Alltogether, 82 legal guardians and 20 legally supervised persons could be recruited. Thereof 13 legal guardians (15.6%) and 13 legally supervised persons (65.0%) had previous experience with research projects. The majority of the guardians with experience in research projects had consented the participation of their supervised persons (n = 12 guardians, 60.0%; in total n = 16 approvals). The possible burden on the participating person was given as the most frequent reason not to participate both by the guardians (n = 44, 54.4%) and by the supervised persons (n = 3, 30.0%). The most frequent motivation to provide consent to participate in a research study was the desire to help other patients by gaining new scientific knowledge (guardians: n = 125, 78.1%; supervised persons: n = 10, 66.6%). CONCLUSIONS: Overall, an open attitude towards medical research can be observed both among legal guardians and supervised persons. Perceived risks and no sense recognized in the study are reasons for not participating in medical research projects.


Assuntos
Atitude , Pesquisa Biomédica/métodos , Demência/psicologia , Tutores Legais/psicologia , Transtornos Mentais/psicologia , Adulto , Estudos Transversais , Feminino , Humanos , Consentimento Livre e Esclarecido/ética , Masculino , Pessoa de Meia-Idade , Risco , Inquéritos e Questionários , Populações Vulneráveis/psicologia
5.
J Cardiothorac Surg ; 16(1): 229, 2021 Aug 11.
Artigo em Inglês | MEDLINE | ID: mdl-34380540

RESUMO

BACKGROUND: The 3D printing technology in congenital cardiac surgery has been widely utilized to improve patients' understanding of their disease. However, there has been no randomized controlled study on its usefulness in surgical consent for congenital heart disease repair. METHODS: A randomized controlled study was performed during consent process in which guardians of candidates for ventricular septal defect repair were given detailed explanation of the anatomy, indication for surgery and potential complication and risks using 3D print ventricular septal defect model (n = 20) versus a conventional 2D diagram (n = 20). A questionnaire was finished by each guardian of the patients. Data collected from questionnaires as well as medical records were statistically analyzed. RESULTS: Statistically significant improvements in ratings of understanding of ventricular septal defect anatomy (p = 0.02), and of the surgical procedure and potential complications (p = 0.02) were noted in the group that used the 3D model, though there was no difference in overall ratings of the consent process (p = 0.09). There was no difference in questionnaire score between subjects with different education levels. The clinical outcomes, as represented by the duration of intensive care unit stay, intubation duration was comparable between the two groups. CONCLUSIONS: The results indicated that it was an effective tool which may be used to consent for congenital heart surgery. Different education levels do not affect guardians' understanding in consent. The impact of 3D printing used in this scenario on long term outcomes remains to be defined.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Termos de Consentimento , Comunicação Interventricular , Consentimento Livre e Esclarecido , Impressão Tridimensional , Adulto , Recursos Audiovisuais , Pré-Escolar , Comunicação , Feminino , Comunicação Interventricular/cirurgia , Humanos , Lactente , Tutores Legais , Masculino , Modelos Anatômicos , Modelagem Computacional Específica para o Paciente , Período Pré-Operatório , Inquéritos e Questionários
6.
Psychiatr Pol ; 55(3): 585-598, 2021 Jun 30.
Artigo em Inglês, Polonês | MEDLINE | ID: mdl-34460883

RESUMO

Within the scope of mental health protection, numerous practical problems arise concerning the issue of providing health services to a minor. Admission of a minor to a psychiatric hospital is associated in practice with numerous doubts. This part of the article describes the conditions of admission to hospital with the consent of the patient. It distinguishes and accurately describes situations where a minor is under or over 16 years of age. In addition, it explains situations where there is a contradiction of declarations of will by legal guardians in relation to admission, their inability to perform legal acts, or a contradiction of the statements of the minor and guardian. It also addresses the aspect of receiving written consent during the COVID-19 epidemic.


Assuntos
Internação Compulsória de Doente Mental/legislação & jurisprudência , Consentimento Livre e Esclarecido/legislação & jurisprudência , Tutores Legais/legislação & jurisprudência , Menores de Idade/legislação & jurisprudência , Admissão do Paciente/legislação & jurisprudência , Adolescente , COVID-19/epidemiologia , Hospitais Psiquiátricos/legislação & jurisprudência , Humanos , Transtornos Mentais/terapia , Polônia
7.
PLoS One ; 16(6): e0252996, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34125842

RESUMO

BACKGROUND: Informed consent (IC) is a healthcare standard emphasizing the meaning of human dignity as clarified in the Universal Declaration of Human Rights. Data about IC practices in Egypt is insufficient. This study aimed to assess the Egyptian patients'/guardians' experiences about IC and their expectations about its practices' purposes in general and according to the type of the healthcare facility. METHODS: Self-administered questionnaire was carried out for 1092 participants who had undergone or were scheduled to a procedure requiring an IC at three studied types for Egyptian health care facilities. Ten statements were ranked twice by the participants to reflect their perception of IC purpose as per what is currently practiced and what they believe should be practiced. RESULTS: IC implementation varies significantly (p<0.05) across the health care facilities in Egypt. The percentage of its implementation at the non-governmental facilities, governmental facilities, and university hospital was 85.9%, 77.8%, and 63.8 respectively. The first three ranked purposes of the current IC practices were: "Helping patient/guardian decide (64.9%)", "Documenting patient's/guardian's decision (59.3%)", and "Having shared decision (57.3%)". The perceived purposes of IC to be practiced were: "Informing the patient/guardian (68.4%)", "Making sure patient/guardian understand (65.3%)" and "Documenting patients/guardians decisions (65.1%)". "Being a meaningless routine" was reported by the majority to be ranked as a low purpose for IC current and preferred practices. CONCLUSION: The practice of IC is common within the Egyptian medical community. Participants believe that information disclosure "Making sure patients understand" has to help in IC decision making and its main purpose. However, unfortunately, this is not perceived as a current purpose of IC. There was consensus agreement that documenting the patient's/guardian's decision and informing the patient/guardian are perceived as both important current and preferred purposes for IC practices.


Assuntos
Tomada de Decisões , Revelação/normas , Consentimento Livre e Esclarecido/ética , Tutores Legais/psicologia , Percepção , Adulto , Estudos Transversais , Egito , Feminino , Humanos , Consentimento Livre e Esclarecido/psicologia , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
8.
PLoS One ; 16(5): e0250570, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33983948

RESUMO

Iodine thyroid blocking (ITB) is effective for preventing childhood thyroid cancer when radioactive iodine is released into the environment during a nuclear power plant accident. Japan employs the pre-distribution of stable iodine (PDSI) to residents living near nuclear power plants; however, the number of residents who have actually received stable iodine to date remains limited. The aim of this study was to evaluate the profile of guardians of children living around the Genkai Nuclear Power Plant (GNPP) in Japan. We distributed self-administered questionnaires regarding perception of risks associated with administration of stable iodide to approximated 400 guardians of children aged 0-6 in 10 kindergartens located in four municipalities. We obtained responses from 286 guardians, and after excluding invalid responses, 247 were included in the analysis. Logistic regression analysis revealed that living within 5 km of the GNPP (odds ratio [OR] = 4.48, 95% confidence interval [CI]: 2.43-8.24), awareness of preferential implementation of ITB to children (OR = 3.33, 95%CI: 1.78-6.22), and awareness of the prophylaxis booklet published by the local government (OR = 2.53, 95%CI: 1.37-4.68) were independently associated with PDSI for children. The main reasons for not receiving PDSI were "anxiety about the side effects of stable iodine" (40.2%), "distrust of the effectiveness of SI" (23.5%), "complicated procedures for receiving stable iodine" (15.7%) and "missed the date for receiving stable iodine" (8.8%). In the case of ITB implementation during a nuclear emergency, it is necessary to clarify the risk perceptions of guardians and adapt risk communication accordingly.


Assuntos
Radioisótopos do Iodo/efeitos adversos , Iodo/uso terapêutico , Tutores Legais/psicologia , Neoplasias Induzidas por Radiação/prevenção & controle , Centrais Nucleares/normas , Percepção/fisiologia , Neoplasias da Glândula Tireoide/prevenção & controle , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Japão , Masculino , Pessoa de Meia-Idade , Neoplasias Induzidas por Radiação/etiologia , Inquéritos e Questionários/estatística & dados numéricos , Neoplasias da Glândula Tireoide/etiologia , Oligoelementos/uso terapêutico
9.
J Pediatr ; 235: 124-129, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33819465

RESUMO

OBJECTIVES: To evaluate the utility of a digital psychological self-assessment tool, MyHEARTSMAP (scores on 10 sections: home, education and activities, alcohol and drugs, relationships and bullying, thoughts and anxiety, safety, sexual health, mood, abuse, and professional resources), in youth presenting to the pediatric emergency department (ED) with a mental health concern. STUDY DESIGN: We conducted a prospective cohort study in 2 tertiary care pediatric EDs from December 2017 to October 2019. Youth 10-17 years old triaged for a mental health concern were screened and enrolled to complete MyHEARTSMAP on a mobile device. A clinician blinded to the MyHEARTSMAP assessment conducted their own assessment which was used as the reference standard. Utility was quantified as the sensitivity and specificity of MyHEARTSMAP in detecting psychiatric, social, youth health, and functional concerns. RESULTS: Among 379 eligible youth, 351 were approached and 233 (66.4%) families were enrolled. Sensitivity for youth MyHEARTSMAP self-assessments ranged from 87.4% in the youth health domain to 99.5% in the psychiatric domain for identifying any concern, and 33.3% in the social domain to 74.6% in the psychiatric domain for severe concerns. Specificity ranged from 66.7% in the psychiatric domain to 98.2% in the youth health domain for no or only mild concerns. CONCLUSIONS: Youth and guardian MyHEARTSMAP assessments are sensitive for detecting psychosocial concerns requiring follow-up beyond pediatric ED evaluation. Specificity for no or only mild concerns was high in the nonpsychiatric domains.


Assuntos
Diagnóstico por Computador , Serviço Hospitalar de Emergência , Transtornos Mentais/diagnóstico , Autoavaliação (Psicologia) , Adolescente , Criança , Estudos de Coortes , Feminino , Humanos , Tutores Legais , Masculino , Sensibilidade e Especificidade , Triagem
10.
Endocrinol Diabetes Metab ; 4(2): e00200, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33855206

RESUMO

Objective: To determine the factors associated with poor glycemic control in children (1-10 years), adolescents (11-18 years) and young adults (19-40 years) with Type 1 Diabetes Mellitus (T1DM) in Kilimanjaro Christian Medical Center (KCMC) in Moshi, Mount Meru Regional Referral Hospital (MMRRH) and Meru District Hospital (MDH) in Arusha, Tanzania. Methods: Cross sectional study of 150 participants conducted from January to June 2019, data was collected by structured questionnaire and analyzed using SPSS version 23. Results: The mean HbA1c was 12.3 ± 2.2%, 146 had poor glycemic control (HbA1c > 7.5%). BMI, insulin regime and caretaker education were associated with poor glycemic control. There were 16 participants diagnosed in DKA and the most frequently reported complications in the prior 3 months were hyperglycemia (n = 25), DKA (n = 18) and hypoglycemia (n = 4). Conclusions: Glycemic control is still very poor particularly in adolescents. Significant associations with glycemic control were higher BMI, insulin regime and guardian education. The study revealed lower prevalence of DKA at diagnosis compared to previous studies.


Assuntos
Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/tratamento farmacológico , Cetoacidose Diabética/etiologia , Controle Glicêmico/estatística & dados numéricos , Hiperglicemia/etiologia , Falha de Tratamento , Adolescente , Adulto , Fatores Etários , Biomarcadores/sangue , Índice de Massa Corporal , Criança , Pré-Escolar , Estudos Transversais , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiologia , Cetoacidose Diabética/epidemiologia , Feminino , Hemoglobina A Glicada , Educação em Saúde , Humanos , Hiperglicemia/epidemiologia , Lactente , Insulina/administração & dosagem , Tutores Legais , Masculino , Fatores de Risco , Inquéritos e Questionários , Tanzânia/epidemiologia , Adulto Jovem
11.
Rev Esp Salud Publica ; 952021 Feb 22.
Artigo em Espanhol | MEDLINE | ID: mdl-33616087

RESUMO

OBJECTIVE: Despite the unquestionable progress in the treatment and legal and social recognition of persons with disabilities with modified capacity,the role and social position of the collective still hinders the development of a full life. The objective was to know the possible effect of the guardianship exercise on the quality of life of persons with disabilities who reside permanently in residential centres and whose ordinary guardianship falls to the public FASAD Foundation. METHODS: Correlational quantitative study. The GENCAT quality of life scale adapted so that the population under study itself was in charge of assessing the areas and dimensions related to their bio-psycho-social well-being. The starting hypothesis is was that exists a better perception of the levels of quality of life with a longer time of guardianship protection. In addition, the research questions were, What effects does the tutelary protection exercised by the FASAD Foundation have on the perception of the quality of life of the interviewed subjects? How do the variables (sex, place of residence and time of guardianship) affect the perception of quality of life? What dimensions present in the quality of life analysis are most affected by the variable time of guardianship? For the analysis of the statistical data, was used the SPSS® Statistics 22.0, a descriptive and bivariate exploration was carried out that showed the level of association and correlation between the variables studied. RESULTS: People under guardianship for a period of more than 3 years present better results in all the dimensions studied -except for rights- regardless of their sex or place of residence. Women under guardianship for a period less than 3 years obtained a general percentile of quality of life of 13.6, while those who were under guardianship for a period greater than 3 years obtained 18.9, in the same way it happened with men (14.1 vs 20.7) The ANOVA statistic and the Pearson correlation table confirm the association and relationship between the variable time of care and the general percentiles of quality of life. CONCLUSIONS: The exercise of guardianship has a positive effect on all the dimensions that integrate the quality of life construct. In addition, knowing the self-perception of the quality of life of the people under guardianship favors knowing the true impact of a support and promotion mechanism such as guardianship.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Tutores Legais/estatística & dados numéricos , Qualidade de Vida , Feminino , Humanos , Masculino , Fatores Socioeconômicos , Espanha
12.
Harefuah ; 160(1): 30-37, 2021 01.
Artigo em Hebraico | MEDLINE | ID: mdl-33474876

RESUMO

INTRODUCTION: Brief medical certificates are central in legal proceedings for guardianship appointments. They have been increasingly criticized, especially for relying upon medical diagnoses, ignoring functioning, decision-making capacity, needs, and preferences of the individual. Changes in social and legal conceptions led in 2016 to the approval of the 18th amendment to the Legal Capacity and Guardianship Law, with less restrictive alternatives to guardianship, and the necessity to hear the person and his preferences. In parallel there have been changes in the understanding and definition of mental disorders. The American Psychiatric Association's DSM-5 of 2013 suggests in its diagnostic criteria and text, explicitly or implicitly, a diagnostic approach for Neurocognitive Disorders that includes: a. an auxiliary table containing six defined cognitive domains and twenty two subdomains, examples of symptoms or observations and assessments, b. a three-step evaluation process: step one, determining a neurocognitive disorder (major or mild) through careful questioning of one to three sources and person and situation appropriate cognitive tests chosen from three groups with various complexities and thresholds or a documented clinical evaluation, and in addition, assessment of independence in everyday activities is required. Step two examines etiology and step three, behavioral symptomatology, and current severity based on instrumental and basic activities of daily living. The approach offers a reliable and precise diagnosis and a multi-level evaluation. We report a case ruled at a Family Court, concerning an elderly person for whom a guardian was sought for an Alzheimer`s dementia diagnosis based on one brief cognitive score. The court, denying the request, preferred several descriptions of instrumental (mostly financial) and basic activities of daily living and hearing the person directly, his arguments and preferences over the mere diagnosis and test score. Implementation of the above approach would have prevented the unnecessary legal proceeding. The approach might serve as a solid, not complicated, platform for clinical assessment of a person on several levels - diagnosis, cognition, mental state and functioning. Coupled with needs and expressed preferences, this platform would help the court in legal proceedings for guardianship in a person with cognitive deterioration.


Assuntos
Doença de Alzheimer , Transtornos Cognitivos , Atividades Cotidianas , Idoso , Doença de Alzheimer/diagnóstico , Humanos , Tutores Legais , Testes Neuropsicológicos
13.
Bioessays ; 43(2): e2000328, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33410176

Assuntos
Tutores Legais , Humanos
14.
J Am Geriatr Soc ; 69(2): 342-348, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33170957

RESUMO

BACKGROUND/OBJECTIVES: Experts have suggested that patients represented by professional guardians receive higher intensity end-of-life treatment than other patients, but there is little corresponding empirical data. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Among veterans aged 65 and older who died from 2011 to 2013, we used Minimum Data Set assessments to identify those who were nursing home residents and had moderately severe or severe dementia. We applied methods developed in prior work to determine which of these veterans had professional guardians. Decedent veterans with professional guardians were matched to decedent veterans without guardians in a 1:4 ratio, according to age, sex, race, dementia severity, and nursing facility type (VA based vs non-VA). MEASUREMENTS: Our primary outcome was intensive care unit (ICU) admission in the last 30 days of life. Secondary outcomes included mechanical ventilation and cardiopulmonary resuscitation in the last 30 days of life, feeding tube placement in the last 90 days of life, three or more nursing home-to-hospital transfers in the last 90 days of life, and in-hospital death. RESULTS: ICU admission was more common among patients with professional guardians than matched controls (17.5% vs 13.7%), but the difference was not statistically significant (adjusted odds ratio = 1.33; 95% confidence interval = .89-1.99). There were no significant differences in receipt of any other treatment; nor was there a consistent pattern. Mechanical ventilation and cardiopulmonary resuscitation were more common among patients with professional guardians, and feeding tube placement, three or more end-of-life hospitalizations, and in-hospital death were more common among matched controls. CONCLUSION: Rates of high-intensity treatment were similar whether or not a nursing home resident with dementia was represented by a professional guardian. This is in part because high-intensity treatment occurred more frequently than expected among patients without guardians.


Assuntos
Cuidados Críticos , Demência , Tutores Legais/estatística & dados numéricos , Casas de Saúde , Assistência Terminal , Serviços de Saúde para Veteranos Militares/estatística & dados numéricos , Idoso , Cuidados Críticos/legislação & jurisprudência , Cuidados Críticos/métodos , Cuidados Críticos/estatística & dados numéricos , Demência/mortalidade , Demência/terapia , Feminino , Mortalidade Hospitalar , Humanos , Unidades de Terapia Intensiva/estatística & dados numéricos , Masculino , Casas de Saúde/organização & administração , Casas de Saúde/estatística & dados numéricos , Transferência de Pacientes/legislação & jurisprudência , Transferência de Pacientes/estatística & dados numéricos , Estudos Retrospectivos , Índice de Gravidade de Doença , Assistência Terminal/métodos , Assistência Terminal/organização & administração , Assistência Terminal/estatística & dados numéricos , Consentimento do Representante Legal , Estados Unidos/epidemiologia
15.
J Women Aging ; 33(5): 541-555, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32045341

RESUMO

This study examines the socio-economic factors influencing public awareness of the adult guardianship and civil trust systems in Japan. The results of this study show that financial literacy is the most influential factor affecting knowledge of the adult guardianship and civil trust systems. Gender, age, living alone, income, and assets are also found to be related to knowledge about these systems, but they are not consistent. We argue that policy makers should emphasize financial literacy and conduct targeted promotion campaigns to help those living with dementia to continue to participate in and benefit from economic activities.


Assuntos
Renda , Tutores Legais , Confiança , Humanos , Japão , Fatores Socioeconômicos
16.
J Pain Symptom Manage ; 62(1): 81-90.e2, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33212143

RESUMO

CONTEXT: Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior studies suggest that persons under guardianship may experience delays in transitions of care. OBJECTIVES: To compare quality of end-of-life care for persons under guardianship to a matched group on objective indicators and to identify narrative themes characterizing potential obstacles to quality end-of-life care. METHODS: One hundred sixty-seven persons under guardianship who died between 2003 and 2019 within the Veterans Healthcare Administration in Massachusetts and Connecticut matched on a 1:1 basis to persons without guardians. The groups were compared on treatment specialty at death, days of hospice and intensive care unit care, and receipt of palliative care consultation. Additionally, patient narratives for those under guardianship with extended lengths in intensive care unit were subjected to qualitative analysis. RESULTS: Overall, <1% were under guardianship. Within this sample of persons who died within the Veterans Health Administration, persons under guardianship were as likely as patients in the comparison group to receive palliative care consultation (odds ratio [CI] = 0.93 [.590-1.46], P = .359), but were more likely to have ethics consultation (odds ratio [CI] = 0.25 [0.66-0.92], P = .036) and have longer lengths of ICU admission (ß = -.34, t = -2.70, P = .009). Qualitative findings suggest that issues related to family conflict, fluctuating medical course, and limitations in guardian authority may underlie extended lengths of stay. CONCLUSION: Guardianship appears to be rare, and as a rule, those under guardianship have equal access to hospice and palliative care within Veterans Health Administration. Guardianship may be associated with health-care challenges in a small number of cases, and this may drive perceptions of adverse outcomes.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Unidades de Terapia Intensiva , Tutores Legais , Massachusetts , Cuidados Paliativos
17.
PLoS One ; 15(12): e0244049, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33370323

RESUMO

OBJECTIVE: To explore parents' and guardians' views and experiences of accessing National Health Service (NHS) general practices for routine childhood vaccinations during the coronavirus (COVID-19) pandemic in England. DESIGN: Mixed methods approach involving an online cross-sectional survey (conducted between 19th April and 11th May 2020) and semi-structured telephone interviews (conducted between 27th April and 27th May 2020). PARTICIPANTS: 1252 parents and guardians (aged 16+ years) who reported living in England with a child aged 18 months or under completed the survey. Nineteen survey respondents took part in follow-up interviews. RESULTS: The majority of survey respondents (85.7%) considered it important for their children to receive routine vaccinations on schedule during the COVID-19 pandemic; however, several barriers to vaccination were identified. These included a lack of clarity around whether vaccination services were operating as usual, particularly amongst respondents from lower income households and those self-reporting as Black, Asian, Chinese, Mixed or Other ethnicity; difficulties in organising vaccination appointments; and fears around contracting COVID-19 while attending general practice. Concerns about catching COVID-19 while accessing general practice were weighed against concerns about children acquiring a vaccine-preventable disease if they did not receive scheduled routine childhood vaccinations. Many parents and guardians felt their child's risk of acquiring a vaccine-preventable disease was low as the implementation of stringent physical distancing measures (from March 23rd 2020) meant they were not mixing with others. CONCLUSION: To promote routine childhood vaccination uptake during the current COVID-19 outbreak, further waves of COVID-19 infection, and future pandemics, prompt and sustained national and general practice level communication is needed to raise awareness of vaccination service continuation and the importance of timely vaccination, and invitation-reminder systems for vaccination need to be maintained. To allay concerns about the safety of accessing general practice, practices should communicate the measures being implemented to prevent COVID-19 transmission.


Assuntos
COVID-19/imunologia , Tutores Legais/psicologia , Pandemias/prevenção & controle , Pais/psicologia , Vacinação/psicologia , Adolescente , Adulto , Criança , Estudos Transversais , Inglaterra , Feminino , Humanos , Imunização/psicologia , Masculino , Pessoa de Meia-Idade , Adulto Jovem
18.
J Am Med Inform Assoc ; 27(12): 1860-1870, 2020 12 09.
Artigo em Inglês | MEDLINE | ID: mdl-33043368

RESUMO

OBJECTIVE: To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings. MATERIALS AND METHODS: We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype. We applied inductive content analysis of session materials to elicit content priorities and design preferences between sessions. Analysis informed iterative prototype revisions. RESULTS: We conducted 30 design sessions (10 with caregivers, 20 with providers). Caregivers expressed high within-group variability in their content priorities compared to provider groups. Emergency providers had the most unique content priorities among clinicians. We identified 6 key design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology. DISCUSSION: Findings from this study will inform enhancements of electronic health record-embedded LCPs and the development of new LCP tools and applications. The design preferences we identified provide a framework for optimizing integration of family and provider content priorities while maintaining a user-tailored experience. CONCLUSION: Health information platforms that incorporate these design preferences into electronic LCPs will help meet the information needs of caregivers and providers caring for CMC in acute care settings.


Assuntos
Cuidadores , Doença Crônica/terapia , Registros Eletrônicos de Saúde , Planejamento de Assistência ao Paciente , Design Centrado no Usuário , Interface Usuário-Computador , Criança , Pessoal de Saúde , Humanos , Tutores Legais , Pais , Pediatria
19.
J Gerontol B Psychol Sci Soc Sci ; 75(9): 2050-2061, 2020 10 16.
Artigo em Inglês | MEDLINE | ID: mdl-32530034

RESUMO

OBJECTIVES: This study examined challenges experienced by long-term care staff in caring for unbefriended residents who are incapacitated and alone. These residents often are estranged from or have no living family or live geographically distant from them and require a public guardian as their surrogate decision-maker. To date, research on unbefriended older adults has focused on those living in acute care and community settings. Little is known about those living in long-term care homes. METHOD: We conducted semi-structured interviews with 39 long-term care staff (e.g., registered nurses, care aides, social workers) and 3 public guardians. Staff were sampled from seven long-term care homes in Alberta, Canada. We analyzed interview transcripts using content analysis and then using the theoretical framework of complex adaptive systems. RESULTS: Long-term care staff experience challenges unique to unbefriended residents. Guardians' responsibilities did not fulfill unbefriended residents' needs, such as shopping for personal items or accompanying residents to appointments. Consequently, the guardians rely on long-term care staff, particularly care aides, to provide increased levels of care and support. These additional responsibilities, and organizational messages dissuading staff from providing preferential care, diminish quality of work life for staff. DISCUSSION: Long-term care homes are complex adaptive systems. Within these systems, we found organizational barriers for long-term care staff providing care to unbefriended residents. These barriers may be modifiable and could improve the quality of care for unbefriended residents and quality of life of staff. Implications for practice include adjusting public guardian scope of work, improving team communication, and compensating staff for additional care.


Assuntos
Instituição de Longa Permanência para Idosos/organização & administração , Tutores Legais , Assistência de Longa Duração , Casas de Saúde/organização & administração , Estresse Ocupacional , Carga de Trabalho , Idoso , Atitude do Pessoal de Saúde , Canadá , Barreiras de Comunicação , Feminino , Humanos , Assistência de Longa Duração/métodos , Assistência de Longa Duração/organização & administração , Assistência de Longa Duração/psicologia , Masculino , Determinação de Necessidades de Cuidados de Saúde , Estresse Ocupacional/prevenção & controle , Estresse Ocupacional/psicologia , Melhoria de Qualidade , Isolamento Social/psicologia , Responsabilidade Social , Carga de Trabalho/psicologia , Carga de Trabalho/normas
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