Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians.

Importance: Patient portals can be configured to allow confidential communication for adolescents' sensitive health care information. Guardian access of adolescent patient portal accounts could compromise adolescents' confidentiality. Objective: To estimate the prevalence of guardian access to adolescent patient portals at 3 academic children's hospitals. Design, Setting, and Participants: A cross-sectional study to estimate the prevalence of guardian access to adolescent patient portal accounts was conducted at 3 academic children's hospitals. Adolescent patients (aged 13-18 years) with access to their patient portal account with at least 1 outbound message from their portal during the study period were included. A rule-based natural language processing algorithm was used to analyze all portal messages from June 1, 2014, to February 28, 2020, and identify any message sent by guardians. The sensitivity and specificity of the algorithm at each institution was estimated through manual review of a stratified subsample of patient accounts. The overall proportion of accounts with guardian access was estimated after correcting for the sensitivity and specificity of the natural language processing algorithm. Exposures: Use of patient portal. Main Outcome and Measures: Percentage of adolescent portal accounts indicating guardian access. Results: A total of 3429 eligible adolescent accounts containing 25 642 messages across 3 institutions were analyzed. A total of 1797 adolescents (52%) were female and mean (SD) age was 15.6 (1.6) years. The percentage of adolescent portal accounts with apparent guardian access ranged from 52% to 57% across the 3 institutions. After correcting for the sensitivity and specificity of the algorithm based on manual review of 200 accounts per institution, an estimated 64% (95% CI, 59%-69%) to 76% (95% CI, 73%-88%) of accounts with outbound messages were accessed by guardians across the 3 institutions. Conclusions and Relevance: In this study, more than half of adolescent accounts with outbound messages were estimated to have been accessed by guardians at least once. These findings have implications for health systems intending to rely on separate adolescent accounts to protect adolescent confidentiality.

[Effect of guardianship on the quality of life of people with disabilities in Spain.] / Efecto de la tutela en la calidad de vida de personas con discapacidad en España.

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.

OBJETIVO: Pese al incuestionable avance en el tratamiento y reconocimiento jurídico y social de las personas con discapacidad con la capacidad modificada, el rol y la posición social que ocupa el colectivo aún sigue dificultando el desarrollo de una vida plena. El objetivo fue conocer el posible efecto del ejercicio tutelar sobre la calidad de vida en personas con discapacidad que residen de forma permanente en centros residenciales y cuya tutela ordinaria recae sobre la Fundación de carácter público FASAD. METODOS: Estudio de carácter cuantitativo de tipo correlacional. Se adaptó la escala de calidad de vida GENCAT para que fuese la propia población objeto de estudio la encargada de valorar las áreas y dimensiones relacionadas con su bienestar bio-psico-social. La hipótesis de partida fue que existe una mejor percepción sobre los niveles de calidad de vida a mayor tiempo de protección tutelar. Además, las preguntas de investigación fueron, ¿Qué efectos tiene la protección tutelar ejercida por la Fundación FASAD en la percepción de la calidad de vida de los sujetos entrevistados? ¿Cómo afectan las variables (sexo, lugar de residencia y tiempo de tutela) en la percepción de la calidad de vida? ¿Qué dimensiones presentes en el análisis de la calidad de vida se ven más afectadas por la variable tiempo de tutela? Para el análisis de los datos estadísticos se utilizó el SPSS® Stadistics 22.0, se efectuó una exploración descriptiva y bivariada que mostró el nivel de asociación y correlación entre las variables estudiadas. RESULTADOS: Las personas tuteladas por un período superior a 3 años presentan mejores resultados en todas las dimensiones estudiadas -excepto en derechos- independientemente de su sexo o lugar de residencia. Las mujeres tuteladas por un periodo inferior a 3 años obtuvieron un percentil general de calidad de vida de 13,6, mientras que las que se encontraban tuteladas por un periodo superior a 3 años obtuvieron un 18,9, de la misma forma ocurrió con los hombres (14,1 frente al 20,7). El estadístico ANOVA y la tabla de correlaciones de Pearson refrendan la asociación y relación existente entre la variable tiempo de tutela y los percentiles generales de calidad de vida. CONCLUSIONES: El ejercicio de la tutela tiene un efecto positivo en todas las dimensiones que integran el constructo calidad de vida. Además, conocer la autopercepción sobre la calidad de vida de las propias personas tuteladas favorece conocer el verdadero impacto de un mecanismo de apoyo y promoción cómo es la tutela.

Guardianship and End-of-Life Care for Veterans with Dementia in Nursing Homes.

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.

[Factors Related to Salt-Reduction Cognizance and Salt Intake in Women Aged 40-59 Years: Characteristics of Guardians of Medical University Students].

OBJECTIVES: In our previous study in which we aimed to clarify the factors related to salt intake in women aged 40-59 years, salt intake was found to be not related to salt-reduction cognizance. The aim of this research was to clarify factors related to salt intake in those who were cognizant of the importance of reducing their salt intake. METHODS: Two hundred and forty-seven female guardians (effective rate, 32.2%) in a medical university, aged 40-59 years old, participated in this study. The participants were divided into three groups according to their salt-reduction cognizance. RESULTS: There was no significant difference in salt intake between the three groups who were salt-reduction cognizant. Intakes of potassium (mg/1,000 kcal), vegetables, and fruits were higher in those who were cognizant of the importance of reducing their salt intake. The frequencies of consuming stewed foods, miso soup, and vinegared and marinated dishes were also higher. Those who were salt-reduction cognizant were knowledgeable about salt consumption, had experienced making low-salt dishes, used low-sodium seasoning, and made light-tasting dishes by regulating ingredients when cooking. However, when it came to eating, there was no difference in the percentage of those who left most of the broth when eating noodle soups and the frequency with which they added seasoning in terms of salt-reduction cognizance. CONCLUSION: Salt-reduction cognizant women aged 40-59 years made conscious efforts to use less salt at the time of cooking, but made no efforts when eating, even though they were cognizant of the importance of reducing their salt intake.

Conhecimento de responsáveis sobre traumatismo dentário em crianças / Knowledge of parents regarding dental trauma in children

Objetivo: identificar o conhecimento de pais/responsáveis sobre como proceder em caso de traumatismo dentário. Método: pesquisa com desenho observacional descritivo realizada por meio de questionários impressos entregues a 80 pais/responsáveis por crianças atendidas nas disciplinas de Clínica Infantil e Ortodontia I e II da Faculdade Avantis. A análise dos dados foi realizada de forma descritiva e com os testes Qui-Quadrado e Exato de Fisher. Resultados: a prevalência de pais que nunca receberam orientações sobre como porceder perante um traumatismo dentário foi de 75%, associando-se às respostas das perguntas: se saberiam como acondicionar o dente (p=0,001) e se já presenciaram alguma situação de trauma dental (p=0,047). As variáveis socioeconômicas escolaridade e renda e a autopercepção sobre o que fazer em uma situação de traumatismo dentário não se associaram a ter recebido informação sobre como proceder perante um traumatismo dentário, segundo o autorrelato dos responsáveis. A maioria dos pais das crianças nunca receberam informações e não sabem como proceder em caso de um possível traumatismo dentário. Conclusão: ter recebido informação sobre como proceder diante de um traumatismo dentário está associado a já ter presenciado situação de traumatismo dentário e a saber como acondicionar o dente para levar no dentista. (AU)

Objective: to identify the knowledge of parents/ guardians on how to proceed in the event of dental trauma. Method: observational descriptive study performed using printed questionnaires applied to 80 parents/guardians of children assisted in the classes of Children's Clinic and Orthodontics I and II at Faculdade Avantis. The data were analyzed descriptively and with chi-square and Fisher's exact tests. Results: the prevalence of parents who had never received instructions on how to deal with dental trauma was 75%, which was associated with the answers to the questions: "Would you know how to prepare the tooth?" (p = 0.001) and "Have you ever experienced any dental trauma situation?" (p = 0.047). Socioeconomic variables including education and income, and the self-perception on the procedures in case of dental trauma were not associated with having received information about how to proceed in a dental trauma situation according to the self-report of parents/guardians. Most parents had never received information and did not know how to deal with a potential dental trauma. Conclusion:having received information on how to deal with dental trauma is associated with having experienced a dental trauma situation and with how to prepare the tooth to take it to the dentist. (AU)

Age and other risk factors related to reentry to care from kin guardian homes.

Although kinship guardianship is an increasingly important foster care exit pathway for children in the United States, research on the factors leading to kinship guardianship breakdown is lacking. This study examines the factors associated with guardianship breakdown for children who exited foster care to kinship guardianship in California between 2003 and 2010 (N = 18,831). Specifying time-dependent Cox relative risk models, children's age trajectories are directly accounted for in the analysis. This allows differentiation between duration dependence (i.e., time spent in guardianship) and children's development (expressed as age). Overall, 17.3% of children reentered care by 2017. Early adolescents, age 13-15 years (HR = 1.63, p < .001), and late adolescents, age 16-17 years (HR = 1.93, p < .001), had an increased hazard of reentry compared with children under the age of six. Children with a history of mental health concerns had more than twice the hazard of reentering than children without such a history (HR = 2.18, p < .001). Our findings indicate that transition to adolescence was associated with increased risk of reentry into care, highlighting the need for guardianship support services leading up to, and during, this child developmental stage.

Medical Decision-Making for Adults Who Lack Decision-Making Capacity and a Surrogate: State of the Science.

BACKGROUND: Adults who lack decision-making capacity and a surrogate ("unbefriended" adults) are a vulnerable, voiceless population in health care. But little is known about this population, including how medical decisions are made for these individuals. OBJECTIVE: This integrative review was to examine what is known about unbefriended adults and identify gaps in the literature. METHODS: Six electronic databases were searched using 4 keywords: "unbefriended," "unrepresented patients," "adult orphans," and "incapacitated patients without surrogates." After screening, the final sample included 10 data-based articles for synthesis. RESULTS: Main findings include the following: (1) various terms were used to refer to adults who lack decision-making capacity and a surrogate; (2) the number of unbefriended adults was sizable and likely to grow; (3) approaches to medical decision-making for this population in health-care settings varied; and (4) professional guidelines and laws to address the issues related to this population were inconsistent. There have been no studies regarding the quality of medical decision-making and its outcomes for this population or societal impact. CONCLUSION: Extremely limited empirical data exist on unbefriended adults to develop strategies to improve how medical decisions are made for this population. There is an urgent need for research to examine the quality of medical decision-making and its outcomes for this vulnerable population.

Going it Alone: A Scoping Review of Unbefriended Older Adults.

Older adults who have reduced decision-making capacity and no family or friends to compensate for these deficiencies are known as unbefriended and require a public guardian. The purpose of this study was to review the peer-reviewed and grey literature to determine the scope of available research on unbefriended older adults in Canada and the United States. We found limited research examining unbefriended older adults. No Canadian studies or reports were located. Unbefriended older adults were childless or had fewer children, were more cognitively impaired, and were older than older adults who were not unbefriended. These findings demonstrate a stark scarcity of studies on unbefriended older adults. Research is urgently needed using standardized data collection of guardianship status in order to enable studies of the prevalence of public guardianship in Canada.

Sexual Behavior Among Orphaned Adolescents in Western Kenya: A Comparison of Institutional- and Family-Based Care Settings.

PURPOSE: This study sought to assess whether risky sexual behaviors and sexual exploitation of orphaned adolescents differed between family-based and institutional care environments in Uasin Gishu County, Kenya. METHODS: We analyzed baseline data from a cohort of orphaned adolescents aged 10-18 years living in 300 randomly selected households and 19 charitable children's institutions. The primary outcomes were having ever had consensual sex, number of sex partners, transactional sex, and forced sex. Multivariate logistic regression compared these between participants in institutional care and family-based care while adjusting for age, sex, orphan status, importance of religion, caregiver support and supervision, school attendance, and alcohol and drug use. RESULTS: This analysis included 1,365 participants aged ≥10 years: 712 (52%) living in institutional environments and 653 (48%) in family-based care. Participants in institutional care were significantly less likely to report engaging in transactional sex (adjusted odds ratio, .46; 95% confidence interval, .3-.72) or to have experienced forced sex (adjusted odds ratio, .57; 95% confidence interval, .38-.88) when controlling for age, sex, and orphan status. These associations remained when adjusting for additional variables. CONCLUSIONS: Orphaned adolescents living in family-based care in Uasin Gishu, Kenya, may be at increased risk of transactional sex and sexual violence compared to those in institutional care. Institutional care may reduce vulnerabilities through the provision of basic material needs and adequate standards of living that influence adolescents' sexual risk-taking behaviors. The use of single items to assess outcomes and nonexplicit definition of sex suggest the findings should be interpreted with caution.

Asthma treatment in children and adolescents in an urban area in southern Brazil: popular myths and features.

OBJECTIVE: To describe the frequency of popular myths about and features of asthma treatment in children and adolescents in an urban area in southern Brazil. METHODS: The parents or legal guardians of public school students (8-16 years of age) completed a specific questionnaire regarding their understanding of asthma, asthma control, and treatment characteristics. The sample included parents or legal guardians of students with asthma (n = 127) and healthy controls (n = 124). RESULTS: The study involved 251 parents or legal guardians, of whom 127 (68.5%) were the mothers and 130 (51.8%) were White. The mean age of these participants was 38.47 ± 12.07 years. Of the participants in the asthma and control groups, 37 (29.1%) and 26 (21.0%), respectively, reported being afraid of using asthma medications, whereas 61 (48%) and 56 (45.2%), respectively, believed that using a metered dose inhaler can lead to drug dependence. However, only 17 (13.4%) and 17 (13.7%) of the participants in the asthma and control groups, respectively, reported being afraid of using oral corticosteroids. In the asthma group, 55 students (43.3%) were diagnosed with uncontrolled asthma, only 41 (32.3%) had a prescription or written treatment plan, and 38 (29.9%) used asthma medications regularly. CONCLUSIONS: Popular myths about asthma treatment were common in our sample, as were uncontrolled asthma and inappropriate asthma management. Further studies in this field should be conducted in other developing countries, as should evaluations of pediatric asthma treatment programs in public health systems.

Asthma treatment in children and adolescents in an urban area in southern Brazil: popular myths and features / Mitos populares e características do tratamento da asma em crianças e adolescentes de zona urbana do sul do Brasil

Objective: To describe the frequency of popular myths about and features of asthma treatment in children and adolescents in an urban area in southern Brazil. Methods: The parents or legal guardians of public school students (8-16 years of age) completed a specific questionnaire regarding their understanding of asthma, asthma control, and treatment characteristics. The sample included parents or legal guardians of students with asthma (n = 127) and healthy controls (n = 124). Results: The study involved 251 parents or legal guardians, of whom 127 (68.5%) were the mothers and 130 (51.8%) were White. The mean age of these participants was 38.47 ± 12.07 years. Of the participants in the asthma and control groups, 37 (29.1%) and 26 (21.0%), respectively, reported being afraid of using asthma medications, whereas 61 (48%) and 56 (45.2%), respectively, believed that using a metered dose inhaler can lead to drug dependence. However, only 17 (13.4%) and 17 (13.7%) of the participants in the asthma and control groups, respectively, reported being afraid of using oral corticosteroids. In the asthma group, 55 students (43.3%) were diagnosed with uncontrolled asthma, only 41 (32.3%) had a prescription or written treatment plan, and 38 (29.9%) used asthma medications regularly. Conclusions: Popular myths about asthma treatment were common in our sample, as were uncontrolled asthma and inappropriate asthma management. Further studies in this field should be conducted in other developing countries, as should evaluations of pediatric asthma treatment programs in public health systems.

Objetivo: Descrever a frequência de mitos populares e as características do tratamento em asma em crianças e adolescentes em uma amostra urbana no sul do Brasil. Métodos: Foi aplicado um questionário específico, contendo perguntas sobre entendimento da doença, controle da asma e características do tratamento a pais/responsáveis de escolares da rede pública (8-16 anos de idade) com diagnóstico de asma (n = 127) e de controles saudáveis (n = 124). Resultados: Participaram do estudo 251 pais/responsáveis, com predomínio de mães como acompanhantes dos escolares (n = 127; 68,5%) e de etnia caucasiana (n = 130; 51,8%), com média de idade de 38,47 ± 12,07 anos. Sobre os mitos, 37 (29,1%) dos participantes do grupo asma e 26 (21,0%) dos do grupo controle relataram possuir receio de utilizar medicamentos para asma, e 61 (48%) e 56 (45,2%), respectivamente, acreditam que os inaladores pressurizados podem levar a dependência ao fármaco. No entanto, apenas 17 (13,4%) dos participantes do grupo asma e 17 (13,7%) dos do grupo controle relataram ter receio de utilizar corticoide oral. A ausência de controle da asma foi detectada em 55 (43,3%) dos escolares no grupo asma, apenas 41 (32,3%) possuíam uma receita ou um plano por escrito de como tratar da asma e 38 (29,9%) fazia uso contínuo de medicamentos para a doença. Conclusões: A presença de mitos populares sobre o tratamento da asma, a falta de controle da doença e seu manejo inadequado mostraram ser elevados nesta amostra. Nossos achados apontam para a necessidade de novos estudos nesse campo em países em desenvolvimento e de uma avaliação dos programas de manejo da asma pediátrica na saúde pública.

[Living will, durable power of attorney and legal guardianship in the trauma surgery routine : Data from a geriatric trauma center]. / Patientenverfügung, Vorsorgevollmacht und gesetzliche Betreuung im unfallchirurgischen Alltag : Zahlen aus einem alterstraumatologischen Zentrum.

BACKGROUND: Due to the increasing number of elderly patients, trauma surgeons are often confronted with end-of-life treatment decisions. Advance directives can help reduce the lack of clarity in those situations. OBJECTIVES: The aim of this study was to identify the presence of living wills, durable power of attorney, legal guardianship and appointment of guardianship in the geriatric trauma center of a university hospital. MATERIALS AND METHODS: The data of all patients treated in our geriatric trauma center from 01/01/2013 to 03/31/2014 were analyzed regarding the presence of a living will, durable power of attorney, legal guardianship and appointment of guardianship as well as the procedure of documenting those items. RESULTS: Out of 181 patients, 63 % (n = 114) had one or more of these documents. Most frequently used was the durable power of attorney in 33 % (n = 59), followed by a living will in 27 % (n = 48), legal guardianship in 20 % (n = 37) and appointment of guardianship in 7 % (n = 12). The existence of those documents was recorded in 88 % (n = 100) of patients within 24 h after admission; documentation in the medical records was found in 58 % (n = 66). CONCLUSION: A large proportion of patients had one or more of the documents named above. In this respect, standardized documentation of advance directives in the medical record is an important issue for all persons involved.

Prevention nearby: the influence of the presence of a potential guardian on the severity of child sexual abuse.

The main aim of this study was to examine the effect of a potential guardian on the severity of child sexual abuse. Using data obtained on crime events from adult child sexual offenders incarcerated in Queensland (Australia), mixed-effects logistic regression analyses were conducted to examine the effect of potential guardianship on the severity of abuse. Controlling for victim and situational characteristics, the analyses showed that the presence of a potential guardian reduced the duration of sexual contact and the occurrence of penetration. Presence of a potential guardian decreased the risk of sexual penetration by 86%. The study highlights the importance of the presence of a potential guardian for reducing the severity of child sexual abuse, and suggests more broadly that guardianship may be an important protective factor in sexual offending.

Protecting victims of elder financial exploitation: the role of an Elder Abuse Forensic Center in referring victims for conservatorship.

OBJECTIVES: The aim of this study was to examine the extent to which an Elder Abuse Forensic Center protects financial exploitation (FE) victims through referral to the Office of the Public Guardian (PG) for investigation and possible conservatorship (called 'guardianship' in many states). METHOD: Los Angeles County Elder Abuse Forensic Center cases involving adults aged 65 and older (April 2007-December 2009) were matched using one-to-one propensity-score matching to 33,650 usual care Adult Protective Services (APS) cases. The final analysis sample consisted of 472 FE cases. RESULTS: Compared to usual care, Forensic Center cases were more likely to be referred to the PG for investigation (30.6%, n = 72 vs. 5.9%, n = 14, p < .001). The strongest predictors of PG referral were suspected cognitive impairment, as identified by APS (odds ratio [OR] = 11.69, confidence intervals [CI]: 3.50-39.03), and Forensic Center review (OR = 7.85, CI: 3.86-15.95). Among referred cases, the court approved conservatorship at higher rates - though not statistically significant - for Forensic Center cases than usual care (52.9%, n = 36/68 vs. 41.7%, n = 5/12). CONCLUSION: Conservatorship may be a necessary last resort to improve safety for some FE victims, and the Forensic Center appears to provide a pathway to this service. These findings suggest modification to the Elder Abuse Forensic Center conceptual model and contribute to an emerging body of evidence on the role of the Forensic Center in addressing elder abuse.

The role of capacity assessments in elder abuse investigations and guardianships.

Capacity evaluations of older adults assist in determining whether a situation should be considered elder/dependent adult abuse and which type of intervention is warranted. Capacity evaluations must integrate multiple sources of data and focus on functional abilities. Understanding the legal standard underlying the capacity needed for a specific decision is key in making a clinical opinion relevant in legal settings. Capacity evaluations for guardianships help to identify preserved abilities and make recommendations to enhance decisional and functional capacities that promote the dignity and independence of older adults.

[The living will. An analysis of state of knowledge of patients in the HELIOS hospital Leisnig]. / Die Patientenverfügung. Eine Wissensstandanalyse von Patienten im HELIOS Krankenhaus Leisnig.

On September 1, 2009, the Guardianship Law (Betreuungsgesetz) changed for the third time. Thus, the rights of the people living in Germany have been improved with reference to the preventive instruments. The aim of the work was to find about the subject to what extent patients understand the subject and how many of them have such a preventive document. The area of research has been examined on the basis of a standardized questionnaire drawn up by means of anonymous data collection in the quantitative research design. After the pretest, the survey was done in form of a documented Face-to-face-questioning in the HELIOS hospital Leisnig. The sample size comprised 139 patients from which 84 patients (37 female, 47 male) agreed with the survey. 25 percent of the questioned patients knew the law of living will (Patientenverfügungsgesetz) and 27 percent knew about the content of preventive instruments. 46.4 percent of the surveyed patients, aged between 70 and 75, had at least one preventive instrument. 63.1 percent of the patients believed that a living will has to be in a written form. 21.4 percent said that, in addition, the document has to be authenticated by a notary public. A study by van Oorschot claims that between ten and 15 percent of the people living in Germany have a living will (van Oorschot 2008, p. 443, Sahm & Schroeder 2009, p. 98). The results of this study show a much higher proportion of existing living wills. For the majority of respondents a preventive instrument plays still a minor role, but 46 percent of the population already use a preventive instrument to make provisions for themselves. 27 percent did express their will in theform of a living will. Nevertheless, the survey shows a lack of knowledge of the correct handling of the living will.

A study of consent for participation in a non-therapeutic study in the pediatric intensive care population.

OBJECTIVE: To document the legal guardian-related barriers to consent procurement, and their stated reasons for non-participation in a paediatric critical care research study. STUDY DESIGN: A multicentre, prospective, cohort study. PARTICIPANTS: Legal guardians of children who participated in a multicentre study on adrenal insufficiency in paediatric critical illness. Data were collected on all consent encounters in the main study. METHODS: Screening data, reasons for consent not being obtained, paediatric risk of mortality (illness severity) scores and age were collected on all 1707 patients eligible for participation in the Adrenal Insufficiency Study. RESULTS: The main barriers to approaching legal guardians for consent were lack of availability of the legal guardians (321/1707) and language barriers (84/1707). Legal guardians of 917 patients were approached with an overall consent rate of 42% (range 14-56% across the seven sites). 81% of the 528 legal guardians who declined consent provided an unsolicited reason for refusal. The three most commonly stated reasons were: being overwhelmed (117/429), not wanting anything else done to their child (63/429) and not wanting an additional medication (53/429). In addition, 14.2% cited research-related concerns as the reason for their non-participation. CONCLUSIONS: Barriers to consent procurement in a non-therapeutic paediatric critical care study appear to occur at many levels with lack of availability of legal guardians, and legal guardians feeling overwhelmed, being the most commonly recorded reasons. Further research into the impact of these findings on the validity and generalisability of the results of such studies is necessary prior to the development and study of future consent models.

Costs of inaction on maternal mortality: qualitative evidence of the impacts of maternal deaths on living children in Tanzania.

BACKGROUND: Little is known about the interconnectedness of maternal deaths and impacts on children, beyond infants, or the mechanisms through which this interconnectedness is established. A study was conducted in rural Tanzania to provide qualitative insight regarding how maternal mortality affects index as well as other living children and to identify shared structural and social factors that foster high levels of maternal mortality and child vulnerabilities. METHODS AND FINDINGS: Adult family members of women who died due to maternal causes (N = 45) and key stakeholders (N = 35) participated in in-depth interviews. Twelve focus group discussions were also conducted (N = 83) among community leaders in three rural regions of Tanzania. Findings highlight the widespread impact of a woman's death on her children's health, education, and economic status, and, by inference, the roles that women play within their families in rural Tanzanian communities. CONCLUSIONS: The full costs of failing to address preventable maternal mortality include intergenerational impacts on the nutritional status, health, and education of children, as well as the economic capacity of families. When setting priorities in a resource-poor, high maternal mortality country, such as Tanzania, the far-reaching effects that reducing maternal deaths can have on families and communities, as well as women's own lives, should be considered.

Implication of changes in Mental Health Laws in 2009-2010, a local Welsh experience.

AIMS & METHOD: This study seeks to explore the nature and extent of any increase, along with the impact of the increase on the workload of the MHA/DoLs practitioners. Retrospective collection of data from MHA department and Guardianship/Deprivation of Liberty coordinators was followed by statistically evaluating the data. RESULTS: Over all, there was 56% increase in the use of the MHA over the previous year; the number of Guardianship orders increased by 85% while CTO increased by 825% and the number of tribunal appeals increased by 260%. Guardianship orders were 100% for S7 with an average length of 24 months. 36% of Guardianship orders lasted less than a year. In 2009/10 there were 98 DoLs authorisations. 70% of DoLs authorisations were supervised by the Local Authorities compared to 30% by the Local Health Board. Rate of DoLs authorisations per 100,000 populations was 42.3 for Local Authorities and 6.6 for Local Health Board. The average time consumed for the all new assessments amounted to 234.4 extra days per year. CLINICAL IMPLICATIONS: The study shows increase in the volume of MHA, Guardianships and DoLs assessments. The amendments of the Act 2007 also attract an increase in the appeal process. The use of both the Act and the Deprivation of Liberty has increased workload for all involved practitioners.

Family factors affect clinician attitudes in pediatric end-of-life decision making: a randomized vignette study.

CONTEXT: Conflicts between families and clinicians in pediatric end-of-life (EOL) care cause distress for providers, dissatisfaction for patients' families, and potential suffering for terminally ill children. OBJECTIVES: We hypothesized that family factors might influence clinician decision making in these circumstances. METHODS: We presented vignettes concerning difficult EOL decision making, randomized for religious objection to therapy withdrawal and perceived level of family involvement, to clinicians working in three Children's Hospital intensive care units. Additionally, attitudes about EOL care were assessed. RESULTS: Three hundred sixty-four respondents completed the questionnaire, for an overall response rate of 54%. Respondents receiving the "involved family" vignette were more likely to agree to continue medical care indefinitely (P<0.0005). Respondents were marginally more likely to pursue a court-appointed guardian for those patients whose families had nonreligious objections to withdrawal (P=0.05). Respondents who thought that a fear of being sued affected decisions were less likely to pursue unilateral withdrawal (odds ratio 0.8, 95% CI=0.6-0.9). Those who felt personal distress as a result of difficult EOL decision making, thought they often provided "futile" care, or those who felt EOL care was effectively addressed at the institution were less likely to want to defer to the parents' wishes (range of odds ratios 0.7-1). CONCLUSION: In this randomized vignette study, we have shown that family factors, particularly how involved a family seems to be in a child's life, affect what clinicians think is ethically appropriate in challenging EOL cases. Knowledge of how a family's degree of involvement may affect clinicians should be helpful to the clinical ethics consultants and offer some degree of insight to the clinicians themselves.