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.

Sibling relationships and the interaction within these relationships play a central role in children’s general development and will therefore impact on functional outcomes of children with severe speech and language disabilities. Siblings of children with disabilities have often felt excluded from family interactions, possibly causing negative attitudes towards participation with their siblings, in turn impacting negatively on the functional outcomes of their siblings with disabilities. The main aim of this research is to determine the attitudes of typically-developing children towards participation with their younger siblings with severe speech and language disabilities in four everyday life situations, namely: play (major life areas), communication, activities of daily living as part of domestic life and interpersonal relationships (time and responsibility issues). Twenty-seven older, typically-developing siblings of children with severe speech and language disabilities were selected to complete the measuring instrument (SAS). The results indicated that the participants held the most positive attitudes towards participation in play (major life areas) but that they held less positive attitudes towards communication participation and that they were least positive about participation in interpersonal relationships (time and responsibility issues). This study succeeded in documenting attitudes of siblings towards participating in four everyday life situations with their younger sibling. It is envisaged that these results will provide tentative guidelines for how activity-based interventions can best be structured to support both the child with a disability and their sibling. Copyright / Dissertation (Master of Arts)--University of Pretoria, 2012. / Centre for Augmentative and Alternative Communication (CAAC) / unrestricted