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.

Attitudes of legal guardians and legally supervised persons with and without previous research experience towards participation in research projects: A quantitative cross-sectional study.

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.

Egyptian patients'/guardians' experiences and perception about clinical informed consent and its purpose: Cross sectional study.

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.

Risk perception of the pre-distribution of stable iodine to guardians of children living around the Genkai Nuclear Power Plant, Saga Prefecture, Japan.

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.

Parents' and guardians' views and experiences of accessing routine childhood vaccinations during the coronavirus (COVID-19) pandemic: A mixed methods study in England.

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.

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.

Concerns of surrogate decision makers for patients with acute brain injury: A US population survey.

OBJECTIVE: To determine whether groups of surrogates for patients with severe acute brain injury (SABI) with poor prognosis can be identified based on their prioritization of goals-of-care (GOC) decisional concerns, an online survey of 1,588 adults recruited via a probability-based panel representative of the US population was conducted. METHODS: Participants acted as a surrogate for a GOC decision for a hypothetical patient with SABI and were randomized to 1 of 2 prognostic scenarios: the patient likely being left with a range of severe functional disability (SD) or remaining in a vegetative state (VS). Participants prioritized a list of 12 decisional concerns via best-worst scaling. Latent class analysis (LCA) was used to discover decisional groups. RESULTS: The completion rate was 44.6%; data weighting was conducted to mitigate nonresponse bias. For 792 SD respondents, LCA revealed 4 groups. All groups shared concerns regarding respecting patient wishes and minimizing suffering. The 4 groups were otherwise distinguished by unique concerns that their members highlighted: an older adult remaining severely disabled (34.4%), family consensus (26.4%), doubt regarding prognostic accuracy (20.7%), and cost of long-term care (18.6%). For the 796 VS respondents, LCA revealed 5 groups. Four of the 5 groups had similar concern profiles to the 4 SD groups. The largest (29.0%) expressed the most prognostic doubt. An additional group (15.8%) prioritized religious concerns. CONCLUSIONS: Although surrogate decision makers for patients with SABI are concerned with respecting patient wishes and minimizing suffering, certain groups highly prioritize other specific decisional factors. These data can help inform future interventions for supporting decision makers.

'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.

Parental anxiety in pediatric surgery consultations: the role of health literacy and need for information.

INTRODUCTION: Although important, parental anxiety, health literacy and need-for-information in pediatric surgery outpatient clinics have not been extensively studied. Lower educational attainments, minorities and lower socioeconomic status have been associated with limited health literacy. Parental anxiety has been related to health literacy, sex, education and information needs. The aim of this study is to investigate health literacy and need-for-information and their association to parental anxiety in consultations of pediatric surgery. MATERIALS & METHODS: We conducted an observational, cross-sectional study in the outpatient pediatric surgery clinic from December 2016 to October 2017. Health literacy, anxiety and need-for-information of parents/guardians of children waiting for pediatric surgical consultation were evaluated. Multivariate regression analysis was used to examine the impact of health literacy and need-for-information on parental/guardian anxiety considering sociodemographic and clinical characteristics of the participants. RESULTS: Almost half (46.1%) of the 664 parents/guardians recruited had limited or problematic health literacy and 79.8% of the sample was classified as being anxious. Parental/guardian anxiety was associated at the multiple regression analysis with parental health literacy level (ß = -0.282, p < 0.001), need-for-information preoperatively (ß = 0.907, p < 0.001), educational level (ß = -0.716, p = 0.001), sex (ß = 1.563, p < 0.001), and severity of the condition of the child (ß = 0.379, p < 0.001). CONCLUSION: Parents/guardians experience high levels of anxiety, which is associated to health literacy and need-for-information. These factors should be considered in pediatric surgical consultations, aiming to reduce parental anxiety. TYPE OF STUDY: Retrospective Study. LEVEL OF EVIDENCE: Level II.

Dealing With the Caretaker Whose Judgment Is Impaired by Alcohol or Drugs: Legal and Ethical Considerations.

An estimated 8.7 million children live in a household with a substance-using parent or guardian. Substance-using caretakers may have impaired judgment that can negatively affect their child's well-being, including his or her ability to receive appropriate medical care. Although the physician-patient relationship exists between the pediatrician and the child, obligations related to safety and confidentiality should be considered as well. In managing encounters with impaired caretakers who may become disruptive or dangerous, pediatricians should be aware of their responsibilities before acting. In addition to fulfilling the duty involved with an established physician-patient relationship, the pediatrician should take reasonable care to safeguard patient confidentiality; protect the safety of their patient, other patients in the facility, visitors, and employees; and comply with reporting mandates. This clinical report identifies and discusses the legal and ethical concepts related to these circumstances. The report offers implementation suggestions when establishing anticipatory procedures and training programs for staff in such situations to maximize the patient's well-being and safety and minimize the liability of the pediatrician.

[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.

Parental knowledge gaps and barriers for children receiving human papillomavirus vaccine in the Rio Grande Valley of Texas.

Purpose: Despite its availability for more than a decade, the human papillomavirus (HPV) vaccine has low uptake in Texas (49%). The objective of this study was to understand parental knowledge and attitudes about HPV and the HPV vaccine as well as child experience with the HPV vaccine among a medically underserved, economically disadvantaged population. Methods: As part of a Cancer Prevention Research Institute of Texas-funded project to improve HPV vaccination rates, we surveyed parents / guardians of 4th-12th graders (ages 9-17) in the Rio Grande City Consolidated Independent School District (RGCCISD). Descriptive statistics were used to describe parents' knowledge and attitude and children's vaccine experience. Results: Of the 7,055 surveys distributed, 622 (8.8%) were returned. About 84% of the respondents were female. About 57.1% of the parents /guardians had female RGCCISD students with a mean age of 11.7 ± 1.8 years. Overall, 43.9% reported receiving a healthcare provider recommendation and 32.5% had their child vaccinated. Higher percentages were reported if the respondent was female and had a female child aged ≥15 years old. Among survey respondents, 28.2% reported their child initiated the HPV vaccine and 18.8% completed the series. Barriers of uptake included work / school schedule conflicts and no healthcare provider recommendation. Conclusions: There are still prominent gaps in parents' and students' complete understanding of HPV vaccination, gender preferences for vaccination, and provider recommendations. Future interventions must target men and minority populations in order to increase knowledge and awareness about HPV, the HPV vaccine, and HPV-associated cancers.

Physician and Surrogate Agreement with Assisted Dying and Continuous Deep Sedation in Advanced Dementia in Switzerland.

BACKGROUND: Assisted dying and continuous deep sedation (CDS) are controversial practices. Little is known about the perceptions of physicians and surrogates about these practices for patients with advanced dementia. OBJECTIVES: To describe and compare physician and surrogate agreement with the use of assisted dying and CDS in advanced dementia. DESIGN, SETTING, SUBJECTS: Physicians (n = 64) and surrogates (n = 168) of persons with advanced dementia were recruited as part of a randomized controlled trial in Switzerland that tested decision support tools in this population. METHODS: At baseline, the participants were asked about their agreement with assisted dying and CDS in advanced dementia using the following response options: "completely agree," "somewhat agree," "somewhat disagree," "completely disagree," and "do not know." Multivariable logistic regressions compared the likelihood that surrogates versus physicians would completely or somewhat agree (vs. completely or somewhat disagree) with these practices. RESULTS: The physicians and surrogates, respectively, had a mean age (SD) of 50.6 years (9.9) and 57.4 years (14.6); 46.9% (n = 30/64) and 68.9% (n = 115/167) were women. A total of 20.3% (n = 13/64) of the physicians and 47.0% (n = 79/168) of the surrogates agreed with assisted dying in advanced dementia. Surrogates were significantly more likely to agree with this practice than physicians (adjusted odds ratio, 3.87; 95% CI: 1.94, 7.69). With regard to CDS, 51.6% (n = 33/64) of the physicians and 41.9% (n = 70/169) of the surrogates agreed with this practice, which did not differ significantly between the groups. CONCLUSIONS: The surrogates were more agreeable to considering assisted dying in the setting of advanced dementia than the physicians, and about half of the participants in both groups reported CDS to be an appropriate option for this population.

Caregivers' perception of and experience with variants of uncertain significance from whole exome sequencing for children with undiagnosed conditions.

Despite its promising diagnostic yield, whole exome sequencing (WES) frequently introduces variant(s) of uncertain significance (VUS), which have been speculated to cause parental stress and anxiety. This study aimed to explore the psychosocial impact of receiving a VUS from pediatric WES on caregivers and to identify implications for clinical practice. Fourteen telephone interviews were conducted with parents or legal guardians who received VUS results from their child's WES to assess their understanding of the result, affective responses, perceived impact, and adaptation. Our content analysis showed that most participants had a good understanding of the purpose of the test and the majority of them recalled the result category. Most participants deemed the result had no impact thus far on their perception of their child's condition. However, one participant reported feelings of fear related to the VUS. Most participants experienced a range of emotions from receiving the result. The majority of participants reported that this result did not significantly alter their child's care or their ability to take care of their child, and three participants reported empowerment. Additionally, several participants expressed an interest in research studies and peer support groups dedicated to families with a VUS identified on WES. Our study elicited new information about the psychosocial impact of receiving a VUS from WES. This insight may help to guide pre- and post-WES counseling in the future.

Deviant Peer Behavior and Adolescent Delinquency: Protective Effects of Inhibitory Control, Planning, or Decision Making?

We examined relations between adolescent perceptions of deviant peer behavior and delinquency as moderated by inhibitory control, planning, and decision making in the National Institute of Child Health and Human Development (NICHD) Study of Early Child Care and Youth Development at age 15 (N = 991). Adolescents reported perceptions of deviant peer behavior. Inhibitory control, planning, and decision making were assessed behaviorally. Delinquency was evaluated with a latent variable comprised of parent-guardian perceptions of adolescent delinquency and adolescent self-reports. Only inhibitory control moderated the relationship between deviant peer behavior and delinquency, showing that better inhibition protected against delinquency in contexts of high levels of adolescent perceptions of deviant peer behavior. Findings are discussed in the context of theories of adolescent delinquency and risk taking.

Exploitation, Offense, or Private Issue? Guardians' Perceptions and Self-Efficacy in Handling Girl Compensated Dating in Hong Kong.

Compensated dating (CD) has emerged as a global concern since the 1990s. Although considerable empirical research has been conducted to assess the patterns of and factors influencing CD, limited information is currently available on the attitudes of guardians (e.g., social workers, police officers, parents of students, and community representatives) in a Chinese community toward this issue. Using survey data collected from 962 guardians, the current study analyzes the guardians' perceptions of CD and their self-efficacy in handling this issue. Results show that these guardians perceive CD to be exploitative or harmful and that their self-efficacy in handling this issue was low. In particular, social workers appeared to be considerably tolerant for this phenomenon. Perceptions of CD were partly predictable by age, gender, and educational attainment, whereas self-efficacy was partly predictable by experience working with cases involving CD. This study represents the first attempt to analyze the guardians' views on a new form of child abuse. Moreover, this research has implications for social intervention, policy, and future research.

Dilemmas for guardians of advanced dementia patients regarding tube feeding.

Background: advanced dementia is an incurable illness, its last stage marked by inability to eat. Tube feeding was deemed a helpful solution at this stage, but in recent years its inefficiency has been proved, and it is no longer practiced in many countries around the world. In Israel, however, the procedure is still accepted. In the gastroenterology department at the Bnai Zion Medical Center, a serious interaction is ongoing with patients' legal guardians, where detailed information is given about the inefficiency of the tube procedure. Nevertheless, the great majority of guardians choose to have it performed. Purpose: to probe the considerations underlying the decision for gastrostomy, despite the data and the recommendations. Method: qualitative research, including participant observation at the clinic and in-depth interviews with guardians. Findings: the families of most patients did not discuss end-of-life issues with them. The overwhelming preference for using the technology was interpreted as life-saving, in contrast to comfort feeding, which was deemed euthanasia. The reasons given for the decision to tube feed were drawn from a range of outlooks: religion, the patient's earlier survival capacity, and pragmatic considerations involving relations with nursing home staff. Conclusion: study of the decision-making process of advanced dementia patients' guardians sheds light on the layers of meaning of the Israeli discourse regarding end-of-life issues.

Checklist to improve informed consent process in pediatric surgery: A pilot study.

PURPOSE: The purpose of this study was to develop and validate a checklist to standardize surgical informed consent process. METHODS: A checklist was created following a literature search. Consent processes were observed from general surgery (GS) and urology (US) in the pre- and post-intervention phases. Competent patients/guardians were asked to complete a satisfaction questionnaire. All trainees and staff surgeons were interviewed on the checklist's utility. RESULTS: 73 observations (GS=39, US=34) and 66 observations (GS=30, US=36) were made in the pre- and post-intervention phase, respectively. Our checklist increased the frequency with which surgeons explained alternative treatments (pre-intervention 23.3% vs. post-intervention 81.8%), the role of trainees (15.1% vs. 72.7%), and the potential outcomes of not pursuing surgery (60.3% vs. 87.9%). The patient/guardian average satisfaction score increased between phases within GS (mean[standard deviation] 3.55[0.58] vs. 3.85[0.24]); p=0.002), but not within US (3.53[0.61] vs. 3.52[0.54]); p=0.705) or the overall sample (3.54[0.59] vs. 3.67[0.46]); p=0.329). Interestingly, there was no significant improvement in patient/guardian average anxiety levels in GS (X2=0.069, p=0.793), US (X2=0, p=1) or the overall sample (X2=0.143, p=0.706) following the intervention. CONCLUSION: Our checklist aids in standardizing the informed consent process. However, it did not significantly change satisfaction or anxiety levels of patients and guardians. TYPE OF STUDY: Prognosis study. LEVEL OF EVIDENCE: Level III.