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.

Functional results after carpal tunnel release in mucopolysaccharidosis

Background Mucopolysaccharidosis consists of a group of diseases caused by the deficiency of lysosomal enzymes, which may lead to the compression of the median nerve in the carpal tunnel due to the accumulation of glycosaminoglycan, resulting in the hand disability. The study purpose is to present functional results of carpal tunnel release in mucopolysaccharidosis patients. Patients were selected from an enzyme replacement group in the Department of Pediatric Neurology. The legal guardians of the patients were informed about the likely functional change of the hands induced by compression of the median nerve. Clinical evaluation was performed in those patients who received their legal guardians’ consent to participate and was included inspection, assessment of functional level, wrinkle test and the digital pinch function to manipulate small and large objects. Ultrasound and electromyography were performed to confirm the clinical median nerve compression. Bilateral extended opening technique was performed to access the carpal tunnel and analyze the anatomic findings of the median nerve and the flexed tendons of the fingers. After the surgical release of the carpal tunnel, the clinical evaluation was repeated. Subjective observations of the legal guardians were also considered. Results Seven patients underwent bilateral surgical opening of the carpal tunnel; six boys, mean age of 9.5 (5 to 13), five of them presenting Type II mucopolysaccharidosis, 1 Type I and 1 Type VI. The average follow-up was 12 months (10–13 months). The functional results observed included the improvement in the handling of small and large objects in all children who underwent decompression of the median nerve. The comparison between the pre-operative and post-operative functional levels revealed that 2 patients evolved from Level II to IV, 3 from Level III to IV, 1 from Level IV to V and 1 patient remained in Level III. Tenosynovitis around the flexor tendons and severe compression of the median nerve in the fourteen carpal tunnels were observed during the surgical procedure. In 6 wrists, partial tenosynovitis was performed. Conclusions Despite the improvement in the overall function of the children' hands, we cannot conclude that only surgery was responsible for the benefit. Better designed studies are required

Pilot study of dietary supplement consumption by kindergarten and elementary school children

Summary Introduction: The use of dietary supplements has been increasing globally, especially among children. A lot of parents are influenced by advertising. In addition, in Poland a trend to self-medication has been observed. Parents often do not distinguish dietary supplements, medicinal products and non-prescription drugs. These are the most common reasons for the increase in sales of dietary supplements in Poland. Until a few years ago, many products containing vitamins and minerals intended for children were sold as medicines. Today, a product with the same formulation is sold as a dietary supplement. However, a few studies have been conducted to assess the use of dietary supplements among Polish children. Objective: The aim of the study was to analyse the use of dietary supplements provided by parents and the study of the awareness of the risks associated with supplements intake among preschool and elementary school students. Methods: The study was conducted by questionnaire method among 316 parents/legal guardians of children attending elementary schools and preschools in three provinces. Results: The questionnaire was completed by 88.3% mothers and 11.7% fathers. The age of the respondents was as follows: 64.5% aged 31–40, 18.3% aged 41–45, 9.5% aged 26–30, 7.2% above 46 years and only 0.3% younger than 25. About 80% of parents administered their children with dietary supplements in specific situations. Vitamin and mineral supplements were predominant. A statistical analysis showed the effect of the education level as well as having many children on the administration of dietary supplements. Conclusion: The questionnaire shows that the vast majority of parents/legal guardians administer their children with dietary supplements. There is a need to educate parents/legal guardians about the use of supplements and the risks involved.

Molecular Detection and Genotyping of Enteric Protists in Asymptomatic Schoolchildren and Their Legal Guardians in Madrid, Spain

Asymptomatic carriage of diarrhoea-causing enteric protist parasites in the general population is poorly understood, particularly in medium- to high-income countries. This molecular epidemiological survey investigates the presence, molecular diversity, and household transmission of Giardia duodenalis, Cryptosporidium spp., Blastocystis sp., and Enterocystozoon bieneusi in schoolchildren aged 2–13 years (n = 74) and their legal guardians (n = 6) in Madrid, Spain. Enteroparasite detection and genotyping was conducted in stool samples by molecular (PCR and Sanger sequencing) methods. Potential associations linked to infections were investigated through epidemiological questionnaires. Giardia duodenalis was the most prevalent enteric parasite found (14%, 95% CI: 7.1–23), followed by Blastocystis sp. (10%, 95% CI: 6.2–22) and Cryptosporidium spp. (3.8%, 95% CI: 0.78–11). None of the participants tested positive for E. bieneusi. Sequence analyses revealed the presence of G. duodenalis assemblage B, sub-assemblage BIV in a single child. The three Cryptosporidium isolates obtained were assigned to C. hominis, two of them belonging to the gp60 subtype IbA10G2. Four Blastocystis subtypes were identified including ST2 (38%, 3/8), ST3 (25%, 2/8), ST4 (25%, 2/8), and ST8 (12%, 1/8). All G. duodenalis and Cryptosporidium isolates were detected in children only. Blastocystis ST3 and ST4 were circulating in members of the same household. Blastocystis carriage rates increased with the age of the participants. Presence of diarrhoea-causing enteric protists was common in apparently healthy children.

Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study

IntroductionThis study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5–17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysisBoth effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child’s perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and disseminationEthical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council’s guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registrationClinicalTrials.gov; NCT04433650.

Juridical Study in The Application of the Law About Foster- Child Adoption in Indonesia by Foreign Nationals

The adoption or adopting transfer of rights to child from authority of parents, legal guardians, or other people who responsible for nurturing, educating, and raise the child to his foster parents family based on law or sentence. Adoption might be conducted to Indonesian children by parents of Indonesian or even in some special cases, adoption can be conducted by foreign nationals. The adoption of Indonesian children by foreign nationals is restricted. This is due to the protection of foster-children who adopted by foreign nationals, so that they do not experience unwanted things considering that the child will be taken abroad by the foster parents. Incidents such as children who, after being taken by their foster parents, experience violence or become victims of human trafficking are things that must be considered before deciding to allow the adoption of Indonesian children by foreign nationals.

«Deprender el ofiçio...» el acceso y el aprendizaje en los talleres gallegos durante los siglos XVI-XVII: las ciudades de Santiago y Ourense como destino = Learning Artisan Crafts in Santiago and Ourense… The Access to and Learning Process in the Sixteenth and Seventeenth Century Galician Artisan Workshops

En la Edad Moderna los maestros de oficios avezaban a los muchachos que querían aprender la misma profesión mecánica. Celebraban con los padres o tutores escritura pública y establecían las condiciones de los contratos. Partiendo de esta premisa trataremos de localizar y analizar las escrituras relacionadas con los contratos de aprendizaje en la Galicia de los siglos XVI y XVII. Pondremos la atención en las ciudades de Santiago y Ourense como destino. El objetivo es aportar algunos datos sobre los jóvenes que fueron llevados de sus casas a otros lugares para adquirir formación durante un período de tiempo. Protagonizaron una movilidad que les alejaba de sus familias. A través de los protocolos notariales, estudiaremos diferentes aspectos: condiciones laborales, evolución de los contratos, procedencia geográfica de los muchachos, oficios artesanales o duración de las estancias.AbstractIn the modern era, master craftsmen took on apprentices who wanted to learn their craft. They signed the public deed with the parents or legal guardians and set contract terms. Taking this premise as a starting point, we will try to locate and analyze the writings related to the apprenticeship contracts in Galicia during the 16th and 17th centuries. Attention will be focused on the cities of Santiago and Ourense as destination points. The aim is to provide information about youths who leave their homes to acquire training over a period of time. They carried out a mobility that took them away from their families. By means of notarial protocols, different aspects will be studied: working conditions, evolution of contracts, geographical origin of the boys, artisan crafts or duration of their stays.

Unplanned hospital transfers from nursing homes: who is involved in the transfer decision? Results from the HOMERN study

Background Emergency department visits and hospital admissions are common among nursing home residents (NHRs) and seem to be higher in Germany than in other countries. Yet, research on characteristics of transfers and involved persons in the transfer decision is scarce. Aims The aim of this study was to analyze the characteristics of hospital transfers from nursing homes (NHs) focused on contacts to physicians, family members and legal guardians prior to a transfer. Methods We conducted a multi-center study in 14 NHs in the regions Bremen and Lower Saxony (Northwestern Germany) between March 2018 and July 2019. Hospital transfers were documented for 12 months by nursing staff using a standardized questionnaire. Data were derived from care records and perspectives of nursing staff and were analyzed descriptively. Results Among 802 included NHRs, n = 535 unplanned hospital transfers occurred of which 63.1% resulted in an admission. Main reasons were deterioration of health status (e.g. fever, infections, dyspnea and exsiccosis) (35.1%) and falls/accidents/injuries (33.5%). Within 48 h prior to transfer, contact to at least one general practitioner (GP)/specialist/out-of-hour-care physician was 46.2% and varied between the NHs (range: 32.3–83.3%). GPs were involved in only 34.8% of transfer decisions. Relatives and legal guardians were more often informed about transfer (62.3% and 66.8%) than involved in the decision (21.8% and 15.1%). Discussion Contacts to physicians and involvement of the GP were low prior to unplanned transfers. The ranges between the NHs may be explained by organizational differences. Conclusion Improvements in communication between nursing staff, physicians and others are required to reduce potentially avoidable transfers.

ANAK DI BAWAH UMUR SEBAGAI WALI NIKAH: SUATU KONSEKUENSI HUKUM DAN URGENSITAS URUTAN PERWALIAN

This research examines the position of underage children who act as guardians in marriage, by looking at the legal implications and urgency of guardianship hierarchy in fiqh munakahat. The purpose of this study is to strengthen the normative analysis of the absolute position of a guardian in marriage. The method in this research is literature review, with a normative theological approach and descriptive analysis.The findings of this study show that children who are not old enough are not legal guardians in marriage. The legal implication can affect the validity of the marriage. In the urgency of guardianship, underage children may be in the closest position in the guardianship hierarchy, but children who are underage do not fulfill the absolute requirements of a guardian in marriage, so their guardianship rights are automatically terminated.Keywords: Children; Guardian of marriage; Legal Consequences; Trusteeship order.

Opinions and Knowledge of Parents Regarding Preventive Vaccinations of Children and Causes of Reluctance toward Preventive Vaccinations

Background: Despite the stability of global vaccination coverage, over 19 million children worldwide do not currently receive basic vaccines. Over the past several years, there has been a dramatic drop in the number of vaccinated children worldwide. The implementation of the vaccination program and the scope of protection depend on the parents or legal guardians, who decide whether to vaccinate their child or not. Studies were conducted to assess parents’ knowledge, attitudes, and beliefs about vaccines, as well as the role of healthcare providers in parents’ decisions. Methods: A population survey was conducted in 2018–2019. Parents or legal guardians of the children were invited to participate in the study during their visits to the clinic for healthy or sick children. The method used in the research was a diagnostic survey. Results: According to the conducted research, men and women constituted 45% and 55% of participants, respectively. The average age of men was 44, while, for women, it was 41. Internal research showed that as much as 71% of parents declared the need for vaccination, although 41% of parents vaccinated their children according to the vaccination calendar. The most frequently mentioned concerns included the possibility of adverse vaccination reactions (22%), the occurrence of autism (7%), and child death (6%). General practitioners had, by far, the greatest impact on the use of protective vaccination in children (73% women and 80% men), although there were cases of discouraging the performance of compulsory vaccinations (41%), and mentioning a doctor (38%) or nurse (3%). Conclusions: Modifiable determinants of the negative attitude toward vaccinations are caused mainly by the lack of knowledge. These obstacles in vaccinations can be overcome by improving health education in terms of the vaccination program.