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- Petersson, Christina
(författare)
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Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 2. |
- Pettersson, Emelie
(författare)
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Finding a pathway – through a procedure in a high-technology environment for a child with an autism spectrum disorder from the perspectives of parents and healthcare professionals
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis framed in the area of disability research describes the pathway for a child with autism spectrum disorder (ASD) through a procedure in a high-technology environment, anaesthesia or radiographic procedures from the perspectives of parents and healthcare professionals. Visiting healthcare services for such procedures can be challenging for a child with ASD partially because of all the stressors in the environment but also because of the preparation phase and the interruptions in the daily routines. Finding the most suitable pathway puts high demands on parents and healthcare professionals and the organisation.This thesis aims to explore and deepen the understanding of the pathway of a child with ASD through a procedure in a high-technology environment from the perspectives of parents and healthcare professionals.Four studies with different methods were conducted to achieve this overall aim, and the four studies had sub-aims connected to the overall aim. Study I explored the parent’s experience of procedures in the high-technology environment together with their child with ASD. Data were collected by a systematic literature review and were obtained from ten studies describing the parents’ experiences. Studies II and III used critical incident technique (CIT) to identify healthcare professionals’ different experiences of situations and actions when leading a child with ASD through a procedure. Twenty healthcare professionals were interviewed, and the interviews revealed over five hundred situations and actions. The situations and actions were then clustered and analysed separately. In Study IV, the parents described the path through a procedure from their own perspective and also from the child’s perspective. The analysis was conducted using reflexive thematic analysis.The findings revealed the complexity of leading a child with ASD through a procedure, underscoring the interplay between the child's impairment and the demanding environment. Parents expressed a profound sense of responsibility for their child's well-being during procedures, and potential consequences of the procedure for the child. Healthcare professionals described a challenge in those situations in relation to the child, the parents, and organisational structures. Healthcare professionals have a great role in facilitating the child’s progress during a procedure in high-technology environments, and in collaboration with the parents the best outcome can be achieved.Through the lens of the Person Process Context Time model (PPCT model) the findings contribute to a deeper understanding of the complexity of leading a child with the disabilities associated with ASD through an environment full of sensory stimuli. Additionally, the findings can contribute as a tool for healthcare professionals in such situations. The healthcare professionals also need to be aware of the burden and loneliness the parents feel in those situations and the tools they require to navigate through the procedure. Furthermore, this thesis underscores the importance of initiating discussions around the use, impact, and consequences of physical restraint during those procedures.
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