Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments. Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system. Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings. Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations. Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

Teaching and learning sexuality in nursing education

Sexuality is recognized as part of holistic nursing care, but its inclusion in clinical practice and nursing training is inconsistent. Based on the question "How students and teachers acknowledge sexuality in teaching and learning?", we developed a study in order to characterize the process of teaching and learning sexuality in a micro perspective of curriculum development. We used a mixed methods design with a sequential strategy: QUAN-qual of descriptive and explanatory type. 646 students and teachers participated. The quantitative component used questionnaire surveys. Document analysis was used in the additional component. A curricular dimension of sexuality emerges guided by a behaviourist line and based on a biological vision. The issues considered sage are highlighted and framed in steps of adolescence and adulthood and more attacghed to female sexuality and procreative aspect. There is in emeergence a hidden curriculum by reference to content from other dimensions of sexuality but less often expressed. Theoretical learning follows a communicational model of reality through abstraction strategies, which infers a deductive method of learning, with a behaviourist approach to assessment. Clinical teaching adresses sexuality in combination with reproductive lealth nursing. The influencing factors of teaching and learning of sexuality were also explored. We conclude that the vision of female sexuality taught and learned in relation to women has a projection of care in clinical practice based on the same principles

El relativismo cultural y su tutela jurídica en el sistema internacional de protección de los derechos humanos

ResumenEste trabajo pretende abordar desde un enfoque deductivo, el fenómeno del relativismo cultural. Es así como se parten de las premisas teóricas y conceptuales de lo que se entiende por este tipo de relativismo, su contraste con los derechos humanos de alcance universal, hasta llegar a su implementación a través de diferentes normas internacionales. Se analizarán las principales fuentes, consistentes en tratados, conferencias y declaraciones, en las que se visualiza la tutela y defensa del relativismo cultural. Finalmente, se reflexionará en torno a la efectividad de la salvaguarda de esta modalidad de relativismo y las particularidades propias de cada una de las fuentes jurídicas y políticas invocadas. Palabras clave: relativismo cultural, cultura, civilización occidental, libertad cultural, derechos humanos, universalismo, tratados internacionales, pacto internacional de derechos económicos, sociales y culturales, convención internacional de la eliminación de todas las formas de discriminación racial, Conferencia Mundial de Derechos Humanos, Declaración de Durban, Organización internacional del Trabajo, UNESCO.AbstractThis paper attempts to deal with, from a deductive approach, the phenomenon of cultural relativism. This is how it starts from the theoretical and conceptual foundations of what is understood by this kind of relativism, its contrast with the universal human rights reaching, to its implementation through various international standards. It analyzed the major sources,consisting of treaties, conferences and declarations, which displays the protection and defenseof cultural relativism. Finally, it reflects on the effectiveness of safeguarding this kind of relativism and the particularities of each of the legal and political sources cited.Keywords: Cultural relativism, Culture, Western Civilization, Cultural Freedom, Human Rights, Universal, International treaties, The International Covenant on Economic, Social and Cultural, International Convention on the Elimination of All Forms of Racial Discrimination, World Conference on Human Rights, International Labour Organization, UNESCO.