Comparing the reliability and predictive power of child, teacher, and guardian reports of noncognitive skills.

Children's noncognitive or socioemotional skills (e.g., persistence and self-control) are typically measured using surveys in which either children rate their own skills or adults rate the skills of children. For many purposes-including program evaluation and monitoring school systems-ratings are often collected from multiple perspectives about a single child (e.g., from both the child and an adult). Collecting data from multiple perspectives is costly, and there is limited evidence on the benefits of this approach. Using a longitudinal survey, this study compares children's noncognitive skills as reported by themselves, their guardians, and their teachers. Although reports from all three types of respondents are correlated with each other, teacher reports have the highest internal consistency and are the most predictive of children's later cognitive outcomes and behavior in school. The teacher reports add predictive power beyond baseline measures of Intelligence Quotient (IQ) for most outcomes in schools. Measures collected from children and guardians add minimal predictive power beyond the teacher reports.

Diverging medical and legal perceptions of the need for legal guardianship in people with dementia: A qualitative study.

BACKGROUND: Dementia is assumed to alter mental capacity, which may necessitate legal guardianship. However, only limited research exists on how dementia affects mental capacity, and most studies have focused solely on a medical perspective and concentrate on memory functions. The aim of this qualitative study was to investigate physicians' and legal experts' perceptions on a broad range of cognitive and neuropsychiatric domains potentially affecting mental capacity and the need for guardianship in people with dementia. METHODS: Physicians (N = 30) and legal experts (N = 20) participated in semi-structured individual interviews. The data were analyzed by using content analysis and further semi-quantified according to the cognitive and neuropsychiatric domains. RESULTS: Physicians considered neuropsychiatric symptoms and executive dysfunction to be the most important deficits in the legal context, while legal experts highlighted episodic memory impairment and dyscalculia. Perceptions regarding the importance of several cognitive and neuropsychiatric symptoms varied between and within the professional groups. CONCLUSIONS: Physicians and legal experts diverged in their perceptions of cognitive and neuropsychiatric domains affecting mental capacity and the need for guardianship. The evaluation and influence of medical evidence among legal experts heavily rely on subjective opinions. Given the substantial potential impact on patients' equal access to their rights, developing standardized guidelines is essential.

Involuntary psychiatric hospitalisation - differences and similarities between patients detained under the mental health act and according to the legal guardianship legislation.

BACKGROUND: Involuntary psychiatric hospitalisation occurs under different legal premises. According to German law, detention under the Mental Health Act (MHA) is possible in cases of imminent danger of self-harm or harm to others, while detention according to the legal guardianship legislation (LGL) serves to prevent self-harm if there is considerable but not necessarily imminent danger. This study aims to compare clinical, sociodemographic and environmental socioeconomic differences and similarities between patients hospitalised under either the MHA or LGL. METHODS: We conducted a retrospective health records analysis of all involuntarily hospitalised cases in the four psychiatric hospitals of the city of Cologne, Germany, in 2011. Of the 1,773 cases, 87.3% were detained under the MHA of the federal state of North Rhine-Westphalia and 6.4% were hospitalised according to the federal LGL. Another 6.3% of the cases were originally admitted under the MHA, but the legal basis of detention was converted to LGL during the inpatient psychiatric stay (MHA→LGL cases). We compared sociodemographic, clinical, systemic and environmental socioeconomic (ESED) variables of the three groups by means of descriptive statistics. We also trained and tested a machine learning-based algorithm to predict class membership of the involuntary modes of psychiatric inpatient care. RESULTS: Cases with an admission under the premises of LGL lived less often on their own, and they were more often retired compared to MHA cases. They more often had received previous outpatient or inpatient treatment than MHA cases, they were more often diagnosed with a psychotic disorder and they lived in neighbourhoods that were on average more socially advantaged. MHA→LGL cases were on average older and more often retired than MHA cases. More often, they had a main diagnosis of an organic mental disorder compared to both MHA and LGL cases. Also, they less often received previous psychiatric inpatient treatment compared to LGL cases. The reason for detention (self-harm or harm to others) did not differ between the three groups. The proportion of LGL and MHA cases differed between the four hospitals. Effect sizes were mostly small and the balanced accuracy of the Random Forest was low. CONCLUSION: We found some plausible differences in patient characteristics depending on the legal foundation of the involuntary psychiatric hospitalisation. The differences relate to clinical, sociodemographic and socioeconomical issues. However, the low effect sizes and the limited accuracy of the machine learning models indicate that the investigated variables do not sufficiently explain the respective choice of the legal framework. In addition, we found some indication for possibly different interpretation and handling of the premises of the law in practice. Our findings pose the need for further research in this field.

On legal guardianship: An exploratory assessment of knowledge, attitudes and practices of resident physicians.

BACKGROUND: Clinicians encounter patients under legal guardianship. We aimed to assess the knowledge, attitudes and practices (KAP) on legal guardianship in residents. METHODS: A KAP pilot survey about legal guardianship was developed by an interdisciplinary medicine-law-public health team and was distributed via institutional email to internal medicine, psychiatry, and neurology residents in a single academic institution. RESULTS: Of the 172 invited residents, 105 (61%) responded and 102 surveys were included in the final analysis. Most respondents (58% women; internal medicine 73%, neurology 15%, psychiatry 12%) had attended 42 medical schools from 16 countries and had heard about guardianship (88%), but only 23% reported having received training on guardianship during medical school or residency. The vast majority (97%) understood the intended benefit of guardianship, but only 22.5% reported knowing that guardianship removed an individual's decision-making rights. Nearly half (47%) of respondents reported never having asked for documentation to prove that an individual was a patient's guardian, and only 15% expected to see a court order as proof of guardianship status. CONCLUSIONS: Although most residents intuitively understood the intended benefit of guardianship, they did not understand its full implications for clinical practice. Training interventions are warranted.

Adolescent patient portals and concerns about confidentiality.

PURPOSE OF REVIEW: To better understand confidentiality issues that arise from adolescent access to patient portals. RECENT FINDINGS: Studies have evaluated the views of teens, parents, providers, and institutional leadership on adolescent patient portals and the risks they pose to adolescent privacy. Additional investigations have shown that teen portal accounts are often inappropriately accessed by parents. Guidelines are needed to better inform the creation of secure teen patient portals. Adolescent providers and other medical staff should be aware of the information available on portals, how to ensure portals are being accessed appropriately, and the potential for confidentiality breaches that come with portal use. Medical organizations that offer portal access need to provide resources to adolescents and their families to improve understanding around the importance of confidential care and how to maintain confidentiality while still engaging meaningfully with the healthcare system through patient portals. SUMMARY: Adolescents realize the benefits portals may offer regarding improved understanding of their health conditions, communication with their providers, and autonomy in their healthcare decisions. However, confidentiality of patient portals is a major concern and a potential barrier to adolescent portal utilization. Adolescent providers should be aware of the limitations of portal systems and advocate for improved confidentiality functionality to ensure teens can access the benefits of patient portals without any harm.

Waiting for guardianship in a public hospital geriatric inpatient unit: a mixed methods observational case series.

BACKGROUND: Patients in acute hospital settings waiting for guardianship and financial management (FM) hearings experience extended length of stay (LOS), with known consequences for frail elderly. This, together with universal agreement that substitute decision-making is a last resort measure, an imperative exists to examine guardianship and FM applications made from within hospital for geriatric inpatients. AIMS: This study aims to examine processes around Guardianship applications in a public hospital Geriatric inpatient setting including times to, reasons for and outcomes of referral; and to explore the content of the medical records in relation to criteria for application. METHOD: This was a mixed methods observational case series using descriptive data supplemented by qualitative case-note analysis of inpatients referred for guardianship (with/without FM) from 2018 to 2020 in a New South Wales Geriatric Medicine inpatient unit. Medical records were examined for evidence of operationalised criteria for guardianship, aligned with disability, capacity and need/risk common to most Australian jurisdictions. RESULTS: Of 45 patients with guardianship applications, 98% were granted guardians and 33 of 37 (89%) FM applications. Multiple risks underpinned applications, most commonly frequent falls (49%) and medication mismanagement (49%). Although only 29% were in receipt of services preadmission, 98% were discharged to residential care. Average hospital LOS was 70 days (interquartile range, 35), contributed to by delays between admission and decision to apply for guardianship/FM (median, 28 inpatient days) and uncertainties around or lack of documented capacity assessments. CONCLUSION: This study identifies potential points along pathways towards guardianship in hospital settings, which might be targeted to streamline if not divert some of these applications. Points of intervention include at initiation of applications, with consideration of alternatives to substitute decision-making by addressing patient needs and using supported decision-making, while improving clinician understanding of capacity assessment and guardianship.

From Guardianship to Supported Decision-Making: Still Searching for True North?

This article argues that asking whether guardianship has changed is the wrong question. It is the wrong question because guardianship does not exist in isolation from other institutions and legal instruments, such as enduring powers and nominee powers, or informal community arrangements of support or substituted decision-making. It is the wrong question because archetypical purity of guardianship as substitution and support as autonomy does not reflect real world experience of it as it is always a mixture of both, changing over time and decision type; and because change is very hard to pin down. In place of arid debates about whether guardianship should be modified or abolished, the better question to ask is where guardianship and its associated institutions fit within an ideally configured holistic package of formal and informal measures, and whether there are any indications of progress towards its realisation, or how that might be achieved.

Guardianship Before and Following Hospitalization.

When ethics committees are consulted about patients who have or need court-appointed guardians, they lack empirical evidence about several common issues, including the relationship between guardianship and prolonged, potentially medically unnecessary hospitalizations for patients. To provide information about this issue, we conducted quantitative and qualitative analyses using a retrospective cohort from Veterans Healthcare Administration. To examine the relationship between guardianship appointment and hospital length of stay, we first compared 116 persons hospitalized prior to guardianship appointment to a comparison group (n = 348) 3:1 matched for age, diagnosis, date of admission, and comorbidity. We then compared 91 persons hospitalized in the year following guardianship appointment to a second matched comparison group (n = 273). Mean length of stay was 30.75 days (SD = 46.70) amongst those admitted prior to guardianship, which was higher than the comparison group (M = 7.74, SD = 9.71, F = 20.75, p < .001). Length of stay was lower following guardianship appointment (11.65, SD = 12.02, t = 15.16, p < .001); while higher than the comparison group (M = 7.60, SD = 8.46), differences were not associated with guardianship status. In a separate analysis involving 35 individuals who were hospitalized both prior to and following guardianship, length of stay was longer in the year prior (M = 23.00, SD = 37.55) versus after guardianship (M = 10.37, SD = 10.89, F = 4.35, p = .045). In qualitative analyses, four themes associated with lengths of stay exceeding 45 days prior to guardianship appointment were: administrative issues, family conflict, neuropsychiatric comorbidity, and medical complications. Our results suggest that persons who are admitted to hospitals, and subsequently require a guardian, experience extended lengths of stay for multiple complex reasons. Once a guardian has been appointed, however, differences in hospital lengths of stay between patients with and without guardians are reduced.

Non-static framework for understanding adaptive designs: an ethical justification in paediatric trials.

Many drugs used in paediatric medicine are off-label. There is a rising call for the use of adaptive clinical trial designs (ADs) in responding to the need for safe and effective drugs given their potential to offer efficiency and cost-effective benefits compared with traditional clinical trials. ADs have a strong appeal in paediatric clinical trials given the small number of available participants, limited understanding of age-related variability and the desire to limit exposure to futile or unsafe interventions. Although the ethical value of adaptive trials has increasingly come under scrutiny, there is a paucity of literature on the ethical dilemmas that may be associated with paediatric adaptive designs (PADs). This paper highlights some of these ethical concerns around safety, scientific/social value and caregiver/guardian comprehension of the trial design. Against this background, the paper develops a non-static conceptual lens for understanding PADs. It shows that ADs are epistemically open and reduce some of the knowledge-associated uncertainties inherent in clinical trials as well as fast-track the time to draw conclusions about the value of evaluated drugs/treatments. On this note, the authors argue that PADs are ethically justifiable given they (1) have multiple layers of safety, exposing enrolled children to lesser potential risks, (2) create social/scientific value generally and for paediatric populations in particular, (3) specifically foster the flourishing of paediatric populations and (4) can significantly improve paediatric trial efficiency when properly designed and implemented. However, because PADs are relatively new and their regulatory, ethical and logistical characteristics are yet to be clarified in some jurisdictions, the cooperation of various public and private stakeholders is required to ensure that the interests of children, their caregivers and parents/guardians are best served while exposing paediatric research subjects to the most minimal of risks when they are enrolled in paediatric trials that use ADs.

Parental waivers to enable adolescent participation in certain forms of health research: lessons from a South African case study.

BACKGROUND: The South African legal framework requires mandatory parental/legal guardian consent for all research with children. Ethics guidelines provide some reprieve by allowing RECs to grant waivers of parental or guardianship consent in certain defined circumstances. In the first instance, consent may be provided by a proxy when parents or guardians are unavailable, for example with orphaned children. In the second instance, guidelines permit adolescent self-consent when the nature of the study justifies this approach, for example, research on sensitive issues like sexual behaviour or substance use. DISCUSSION: South African guidelines set several conditions that must be met for waivers to be granted. These norms overlap with those in international guidelines. However, the ethical norms, especially related to self-consent are sometimes vague. This article critically evaluates the consent norms in the national ethics guidelines and makes recommendations for reform to ethics guidelines in a way that recognises the value of child participation in research, their evolving decision-making capacity and their best interests. CONCLUSION: Recommendations are made to harmonise ethics guidelines and law in a way that promotes child participation in research, to ensure additional protections for adolescents when self-consent is allowed, and to withdraw procedural requirements for the community endorsement of self-consent strategies.

Older Adults under Guardianship: Challenges and Recommendations for Improving Practice.

The probate court may appoint legal guardians to make decisions on behalf of older adults regarding medical needs, living arrangements, or finances. This study aims to highlight the challenges of guardianship for older adults and ways to improve practice at the county level. Focus group discussions were comprised of probate court judges and other court staff, and guardians (including family members, volunteers, attorneys, and professionals) in five counties within the state of Ohio. Themes identified illuminate challenges regarding responsibility to care, elder mistreatment, and administrative bottlenecks. These counties have developed some promising practices including commitment to excellence, resource stability, and community collaboration, to address these challenges.

Unrepresented Adults Face Adverse Healthcare Consequences: The Role of Guardians, Public Guardianship Reform, and Alternative Policy Solutions.

Persons without family or friends to serve as healthcare agents may become "unrepresented" in healthcare, with no one to serve as healthcare agents when decisional support is needed. Surveys of clinicians (N = 81) and attorneys/guardians (N = 23) in Massachusetts reveal that unrepresented adults experience prolonged hospital stays (66%), delays in receiving palliative care (52%), delays in treatment (49%), and other negative consequences. Clinicians say guardianship is most helpful in resolving issues related to care transitions, medical treatment, quality of life, housing, finances, and safety. However, experiences with guardianship are varied, with delays often/always in court appointments (43%) and actions after appointments (24%). Policy solutions include legal reform, education, and alternate models.

Utility of MyHEARTSMAP in Youth Presenting to the Emergency Department with Mental Health Concerns.

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.

Guardianship patient characteristics and outcomes in geriatric social work practice: Australian context.

This study explored the patient characteristics and outcomes in relation to guardianship in a large-scale sub-acute Australian hospital. Fifteen patients who appointed a guardian at The Kingston Center, Monash Health, participated through exploratory data collection and analysis utilizing a de-identifiable template. The findings revealed both diverse and complex patient characteristics, and ethical dilemmas in patient outcomes for social workers. Patient outcomes post-guardianship appointment and discharge highlighted a negative impact from long length of stay and the iatrogenic impact on patient wellbeing in hospital. The study reflected a disparity between patients' discharge goals and their outcomes indicating significant ethical dilemmas and complexities for social workers in ensuring rights to autonomy and responsibility for safety are balanced.

Factors affecting knowledge about the adult guardianship and civil trust systems: evidence from Japan.

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.

[DIAGNOSIS OF MAJOR NEUROCOGNITIVE DISORDER (DEMENTIA) DUE TO ALZHEIMER`S DISEASE FOR THE NOMINATION OF A GUARDIAN].

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.

Framework to Support the Process of Decision-Making on Life-Sustaining Treatments in the ICU: Results of a Delphi Study.

OBJECTIVES: To develop a consensus framework that can guide the process of decision-making on continuing or limiting life-sustaining treatments in ICU patients, using evidence-based items, supported by caregivers, patients, and surrogate decision makers from multiple countries. DESIGN: A three-round web-based international Delphi consensus study with a priori consensus definition was conducted with experts from 13 countries. Participants reviewed items of the decision-making process on a seven-point Likert scale or with open-ended questions. Questions concerned terminology, content, and timing of decision-making steps. The summarized results (including mean scores) and expert suggestions were presented in the subsequent round for review. SETTING: Web-based surveys of international participants representing ICU physicians, nurses, former ICU patients, and surrogate decision makers. PATIENTS: Not applicable. INTERVENTIONS: Not applicable. MEASUREMENTS AND MAIN RESULTS: In three rounds, respectively, 28, 28, and 27 (of 33 invited) physicians together with 12, 10, and seven (of 19 invited) nurses participated. Patients and surrogates were involved in round one and 12 of 27 responded. Caregivers were mostly working in university affiliated hospitals in Northern Europe. During the Delphi process, most items were modified in order to reach consensus. Seven items lacked consensus after three rounds. The final consensus framework comprises the content and timing of four elements; three elements focused on caregiver-surrogate communication (admission meeting, follow-up meeting, goals-of-care meeting); and one element (weekly time-out meeting) focused on assessing preferences, prognosis, and proportionality of ICU treatment among professionals. CONCLUSIONS: Physicians, nurses, patients, and surrogates generated a consensus-based framework to guide the process of decision-making on continuing or limiting life-sustaining treatments in the ICU. Early, frequent, and scheduled family meetings combined with a repeated multidisciplinary time-out meeting may support decisions in relation to patient preferences, prognosis, and proportionality.

Anxiety and Type 1 Diabetes Management: Guardian and Child Report in a Pediatric Endocrinology Clinic.

BACKGROUND: Childhood anxiety prevents optimal diabetes management yet may be underrecognized by guardians. OBJECTIVE: We aimed to investigate associations among anxiety, diabetes treatment adherence, and diabetes symptom control through child and guardian report. METHODS: Cross-sectional pilot study surveying a convenience sample of children (ages 2-21) in a pediatric endocrinology clinic. Behavior Assessment System for Children, Second Edition 2, Self-Care Inventory Report, and Pediatric Quality of Life measured anxiety, diabetes treatment adherence, and diabetes symptom control. Analyses were performed with Spearman correlations. RESULTS: Prevalence of anxiety and related behaviors was higher when reported by children (13% and 24%) vs. guardians (5% and 13%). Child-reported anxiety was associated with worse symptom control in all ages (Pediatric Quality of Life [rs = -0.55, P < 0.01]) and worse treatment adherence in children aged ≤12 (Self-Care Inventory Report [rho = -0.601, P = 0.023]). Guardian-reported anxiety was associated with worse symptom control (Peds QL [rs = -0.38, P = 0.02]). Child- and guardian-reported anxiety were positively correlated (rho = 0.426, P = 0.017)-particularly for children aged >12 (rho = 0.686, P = 0.003)-although not significantly for children ≤ 12 (rho = 0.201, P = 0.473). CONCLUSION: Anxiety in children with type 1 diabetes varies with the domain of diabetes management (treatment adherence vs. symptom control) and reporting source (child vs. guardian). Children aged ≤12 exhibited a stronger relationship between higher anxiety and worse diabetes management with worse treatment adherence and symptom control in the presence of higher anxiety. Guardians of younger children were less effective at recognizing symptoms. Challenges identifying anxiety and its detrimental effects on diabetes management suggest routine screening of anxiety in pediatric endocrinology clinics is especially salient.

'We need to share our stories': the lives of Pakistanis with intellectual disability and their guardians.

INTRODUCTION: The experiences of Pakistanis with intellectual disabilities (IDs) and their family members have been underexplored empirically. METHOD: The present study sought to address this gap by understanding the lives of five Special Olympics Pakistan athletes and their guardians through PhotoVoice. FINDINGS: Through thematic analysis, we present the primary theme concerning Pakistan's cultural context that provides an empirical exploration of cultural beliefs about intellectual disability, cultural expectations and support received by people with intellectual disabilities and their guardians. DISCUSSION: We discuss implications for research and practice.