BACKGROUND: Neurodevelopment and growth are primary concerns when neonates are born extremely premature (between 23 and 28 weeks gestation). The focus of the PENUT Trial is to administer erythropoietin (Epo) to extremely preterm infants and to study the potential neuroprotective effects of Epo. The PENUT ethics survey was designed to provide study investigators with parental feedback regarding the consent process for the PENUT Trial and to improve the consent process for future research trials. OBJECTIVES: The objectives of this research thesis are to learn (1) what factors are important to parents who are approached for informed consent to include their infants in a research study and (2) how parents may be influenced by demographic and social factors. The hypothesis is that parents approached prenatally may be more likely to consider enrolling their infants into the PENUT Trial. METHODS: All parents approached to enroll their eligible infants into the PENUT Trial (both consenting and non-consenting parents) were eligible to complete the ethics survey. While completing the survey, parents (1) responded to statements about factors involved in their decision-making process, (2) rated their overall experiences in being asked to join the PENUT Trial, (3) described what ultimately led them to enroll or not to enroll their infants in the PENUT Trial, and (4) responded to demographic questions. RESULTS: Thirty mothers of infants eligible for the PENUT Trial (22 consenting, 8 non-consenting) were approached by a research study coordinator to complete the survey. Of the 22 consenting mothers, 10 were approached prenatally, and 12 were approached postnatally for the PENUT Trial. However, of the 8 non-consenting mothers, only 1 was approached prenatally, whereas 7 were approached postnatally for the PENUT Trial. The ethics survey was completed by 20 of 22 consenting mothers and 6 of 8 non-consenting mothers. The average rating among mothers of their overall experiences with the consenting process for the PENUT Trial was 3.77 (2.75 among non-consenters, 4.00 among consenters) on a scale of 1 (= poor) to 5 (= excellent). Thirteen mothers preferred to be approached for the PENUT Trial by their baby’s neonatologist (6 preferred their OB/GYN, 5 preferred another doctor, 1 preferred a study coordinator, and 10 had no preference). In addition, 14 mothers preferred that the person approaching them was involved in the research trial (5 preferred person not involved, 2 preferred to be approached by those involved and not involved, and 9 had no preference). Lastly, 18 mothers preferred to be approached prenatally (5 postnatally, and 7 had no preference). CONCLUSIONS: Preliminary findings from the PENUT Trial ethics survey support the hypothesis that mothers prefer to be approached prenatally when considering enrollment of their newborn infants into the PENUT Trial. Survey responses also suggest that during the consent process mothers prefer to be approached by either (1) two neonatologists, with one responsible for the baby’s care and the other responsible for the research trial, or (2) one neonatologist who is involved in both the baby’s care and the research trial.

My dissertation is aimed at the following questions: System of children care, organization of health-care policy in the Czech Republic, competencies and abilities to children care, document Health for Everybody in 21st Century, community nursing, nurse interventions in particular age categories, and my own research proceedings. The research section of the work contains both quantitative and qualitative research procedures. The data were collected of a questionnaire and semi-structured interview. The examined set of a qualitative research consisted of 9 respondents {--} 5 nurses and 4 medical practitioners for children and youth. The quantitative data were collected with an interview method. The questionnaires were designed for the unprofessional public {--} parents of children who are up to 18. The examined set of the questionnaire research consisted of 73 respondents (100%). The research proceeded from mid June 2008 to the end of July 2008 and its results have been processed into category tables and graphs in the program of Microsoft Office Excel 2007. I especially try to find the opinion of children nurses and children medical practitioners on introduction of a community children nurse in the Czech Republic and specify the functions that a community children nurse can perform in the Czech Republic when working with children community. I also try to find locations at which the community children nurse could work, and obstacles hampering to establish this new working position within the Czech Republic. Last but not least, I am interested in the public interest in the nurse{\crq}s affect to health protection and care for children. So far, there has not been a community nurse position established as an independent community professional in health protection and care for children within the Czech Republic. However, in other countries, community nurses work in the state interest and they form a part of the public health-care system. They are rewarded for their work, which is highly appreciated, from the public budget. Development of the community health-care is a WHO priority, and it has already established its firm position in the Czech health-care conception. As the main advantage of introduction of a community nurse I consider the fact, that both children and parents would have a better chance to use a wider variety of health-care services at school, in their household or at the doctor{\crq}s consulting room. Community nurse{\crq}s activities could help to inform families and to improve the health-care edification level. They could also assist the families that need highly intensive health and social care. Because of independent work of community nurses, nurse{\crq}s profession would become more attractive and nurse{\crq}s social position would improve.