Children with juvenile idiopathic arthritis : health-related quality of life and participation in healthcare encounters

Background: Growing up with Juvenile Idiopathic Arthritis (JIA) can be associated with functional limitations, feelings of being different, and an impaired health-related quality of life (HRQOL). Children’s and parents’ reports of child HRQOL may differ. Children report difficulties in communicating their problems to healthcare professionals and in participating at healthcare encounters. The overall aim of the thesis was to explore similarities and differences in how girls and boys with JIA and their parents reported child HRQOL, and to explore how children can be enabled to communicate their health concerns and participate at healthcare encounters. Methods: Fifty-three children diagnosed with JIA (38 girls and 15 boys), with a median age of 14 years, and their parents, responded to three HRQOL questionnaires and a screening instrument for mental health. Twenty-three healthcare professionals from different professions in JIA teams participated in focus groups. Four children and two young adults diagnosed with JIA and four parents of children with JIA participated in 10 separate workshops. The focus groups and workshops were analysed using qualitative content analysis. Results: No gender differences were found between girls’ and boys’ self-reported HRQOL and mental health, measured with the questionnaires. Girls reported their HRQOL and mental health better than their parents reported their child’s health in several sub-domains. Boys tended to report their HRQOL worse than their parents reported their child’s health. Children and parents reported the same child HRQOL with the disease specific HRQOL questionnaire. The theme “Creating an enabling arena” illustrates how healthcare professionals face possibilities and challenges when enabling children to communicate and participate in healthcare encounters. Healthcare professionals, parents, and the healthcare system must adjust to the child. Children and their parents cooperated and complemented each other during healthcare encounters. Healthcare professionals addressed the child’s self-identified needs and made the child feel comfortable during encounters. Healthcare professionals’ working methods aided child participation at healthcare encounters, but the healthcare organisation could be a hinder. The theme “Feeling alienated or familiar with healthcare encounters” illustrates how the children needed extra support from healthcare professionals and their parents to be able to participate. Children felt reluctant to engage in healthcare encounters and experienced difficulty expressing how they really felt. Therefore, children must feel safe, understood, and respected by healthcare professionals and receive the help they need. Over time, children felt more comfortable at healthcare encounters once they knew what would happen and once they were assured that healthcare professionals would give them the support they needed to participate. Conclusions: Child and parent differences in the assessment of HRQOL may depend on the questionnaire used. Differences between child and parent reports of child HRQOL must be taken into account at healthcare encounters. Healthcare professionals adjust their interaction and communication with the child depending on the child’s maturity, and talk about the child’s experiences and challenges in everyday life. Collaboration between children and parents before a healthcare encounter and between children, parents, and healthcare professionals during an encounter help children express their wishes and experiences. Healthcare professionals enable child participation by creating a good relationship with the child and their parents, and by strengthening the confidence and autonomy of the child. Children’s active participation in healthcare encounters varies depending on if they feel alienated or familiar with the encounter. Children distance themselves and resist healthcare encounters if they find them emotionally distressing and feel disregarded and labelled. Over time, children can become more familiar and at ease with healthcare situations once they feel safe and experience personal and positive encounters. When children are prepared for the encounter, provided with the space and support they want, and receive tailored help, they are more enabled and empowered to participate