Encouraging greater empowerment for adolescents in consent procedures in social science research and policy projects

The CO-CREATE project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No. 774210.The United Nations Convention on the Rights of the Child emphasizes the importance of allowing children and adolescents to influence decisions that are important to them following their age and maturity. This paper explores the principles, practices, and implications around using parental versus child/adolescent consent when participating in social science research and policy development. Experiences from two studies are presented: The Confronting Obesity: Co-creating policy with youth (CO-CREATE) and the Health Behaviour in School-aged Children (HBSC) study, a World Health Organization (WHO) Collaborative Cross-National study. Although parental consent may be an important gatekeeper for protecting children and adolescents from potentially harmful research participation, it may also be considered an obstacle to the empowerment of children and adolescents in case they want to share their views and experiences directly. This paper argues that evaluation of possible harm should be left to ethics committees and that, if no harm related to the research participation processes is identified and the project has a clear perspective on collaborating with the target group, adolescents from the age of 12 years should be granted the legal capacity to give consent to participate in the research project. Collaboration with adolescents in the development of the research project is encouraged.Publisher PDFPeer reviewe

Current research and funding in the EU25 countries in the area of asthma in children. Fast-track study initiated by the Joint Research Centre of the European Commission.

There has been a dramatic increase in paediatric asthma rates over the last few decades. Despite the development of effective treatment options and innovations in patient education and trigger avoidance, the chronicity of the disease in a considerable proportion of patients poses an important socio-economic problem. There is increasing evidence that an interplay of genetic predisposition and environmental exposure to a number of agents, including air pollutants, allergens and infectious agents, are operative in the inception and persistence of the clinical asthma phenotype. Therefore, future research has to be performed with large cohorts that are appropriately genotyped, and their environment will then need to be monitored in relation to all possible environmental risk factors. Given the current limited research funding possibilities in a number of European countries, it may be necessary to direct and organise such research activities on a European level

Geschlechterunterschiede

Kolip P, Hoffarth K. Geschlechterunterschiede. In: Dür W, Felder-Puig R, eds. Lehrbuch schulische Gesundheitsförderung. Bern: Hans Huber; 2011: 116-120

Bewegungsverhalten, Kosten mangelnder körperlicher Aktivität und Bewegungsförderung in Österreich

Gesundhei

Psychometric properties of the Activities Scale for Kids-performance after allogeneic hematopoietic stem cell transplantation in adolescents and children

Background The psychometric properties of an instrument, the Activity Scale for Kids-performance (ASKp), were assessed which was proposed to capture physical functioning after allogeneic hematopoietic stem cell transplantation (HSCT). Additionally, this multicenter observational prospective study investigated the influence of clinical correlates focusing on chronic graft-versus-host disease (cGVHD). Methods Patient-reported ASKp, clinician-reported Karnofsky/Lansky status (KPS/PSS), patient characteristics and cGVHD details were assessed of 55 patients with a median age of 12 years at baseline after day +100 post-HSCT and every 3 months during the next 18 months. The psychometric properties were evaluated and ASKp and KPS/PSS status was compared using ANOVAS and multiple regression models. Results The German version of the ASKp showed good psychometric properties except for ceiling effects. Discrimination ability of the ASKp was good regarding the need for devices but failed to predict cGVHD patients. Both the ASKp and the KPS/PSS were associated with patients after adoptive cell therapy being in need for devices, suffering from overlap cGVHD and from steroid side effects but not with patients' age and gender. In contrast to the KPS/PSS the ASKp only showed significant differences after merging moderate and severe cGHVD patients when comparing them to No-cGVHD (F & x202f;= 4.050; p & x202f;= 0.049), being outperformed by the KPS/PSS (F & x202f;= 20.082; p < 0.001). Conclusion The ASKp showed no clear advantages compared to KPS/PSS even though economical and patients' effort was higher. Further application range may be limited through ceiling effects. Both should be taken into consideration. Therefore, the results may not support the usage of ASKp after HSCT and rather suggest KPS/PSS, both patient and clinician reported

Glucocorticoids in the treatment of children with acute lymphoblastic leukemia and Hodgkin's disease:A pilot study on the adverse psychological reactions and possible associations with neurobiological, endocrine, and genetic markers

Purpose: We did a controlled study to assess adverse psychological reactions (APR) associated with high-dose glucocorticoid therapy and tried to detect somatic correlates for the observed reactions. Patients and Methods: Our study included 37 patients with acute lymphoblastic leukemia (ALL.) and 11 patients with Morbus Hodgkin (MH) disease, who were treated with high-dose glucocorticoid therapy, and 26 control patients with other types of malignancies. APRs were assessed with a standardized measure via parent-report. Patients with ALL and MH were further analyzed for signs of neuronal cell death in the cerebrospinal fluid, polymorphisms of the glucocorticoid receptor gene, as well as cortisol, adrenocorticorticotropic hormone, and dehydroepiandrosterone sulfate blood levels. Results: Fifty-four percent of ALL, 36% of MH, and 23% of control patients developed APR in the first few weeks of therapy. Approximately 3.5 months later, the majority of patients with ALL showed no APR, similar to control patients. Patients demonstrating a higher, nonsuppressible secretion of cortisol and/or adrenocorticorticotropic hormone during glucocorticoid therapy were found to be more likely to develop APR. No sign of neuronal cell destruction and no correlation of APR with specific glucocorticoid receptor polymorphisms were found. Conclusion: Our results suggest that the development of APR due to glucocorticoid therapy is measurable and correlates with hormonal reaction patterns