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.

Factors influencing the use of evidence based practice among physiotherapists and occupational therapists in their clinical work

Background: Evidence-based practice (EBP) is a process through which research is applied in daily clinical practice. Occupational therapists (OTs) and physiotherapists (PTs) are expected to work in line with EBP in order to optimise health care resources. This expectation is too seldom fulfilled. Consequently, research findings may not be implemented in clinical practice in a timely manner, or at all. To remedy this situation, additional knowledge is needed regarding what factors influence the process of EBP among practitioners. The purpose of the present study was to identify factors that influence the use of EBP and the experienced effects of the use of EBP among PTs and OTs in their clinical work. Method: This was a qualitative interview study that consisted of six group interviews involving either OTs or PTs employed by the Jönköping County Council in the South of Sweden. Resulting data were analysed using content analysis. Results: The analysis resulted in the following categories: “definition of evidence and EBP”, “sources of evidence”, “barriers to acquiring evidence and to using evidence in clinical work”, “factors that facilitate the acquisition of evidence and the use of evidence in clinical work”, and “personal experiences of using EBP”. Basing clinical practice on scientific evidence evoked positive experiences, although an ambivalent view towards acting on clinical experience was evident. Participants reported that time for and increased knowledge about searching for, evaluating, and implementing EBP were needed. Conclusion: Because OTs are more oriented towards professional theories and models, and PTs are more focused on randomised controlled trials of interventions, different strategies appear to be needed to increase EBP in these two professions. Management support was considered vital to the implementation of EBP. However, the personal obligation to work in line with EBP must also be emphasised; the participants apparently underestimate its importance.