Background: Juvenile idiopathic arthritis (JIA) is a long-term inflammatory arthritis which starts before the age of 16; 60% of those with JIA continue to have symptoms into adulthood. There are wide variations in experiences of adolescents with JIA, including the effects of the condition on social and intellectual development, self-management, psychological and physical functioning. Individual differences may be due to differences in how adolescents conceptualise JIA. Leventhal's Common Sense Self-regulatory Model (CS-SRM) has been used to theorise adults' experiences of illness, however, this has rarely been used with adolescents. The CS-SRM has three components, mental representations (component 1) that drive coping procedures and illness behaviours (component 2) which are then evaluated and appraised (component 3). A review of studies with adolescent cohorts that applied the CS-SRM found no evidence-base with which to justify application of an adult theory with children or adolescents. Thus the applicability of the theory and the use of the associated questionnaire, the Revised Illness Perceptions Questionnaire (IPQ-R), with adolescents are problematic. Aims: The aims of this PhD were first to assess the suitability of the CS-SRM for adolescents with JIA by investigating the three components of the model, and second, to develop a questionnaire for use with this population. Methods: To investigate the first two components of the CS-SRM, twenty-one participants aged between 11-16 years were recruited from a national cohort of JIA patients. Data collection was undertaken using cognitive interviewing. Framework analysis of the data was used to identify domains used by adolescents to conceptualise their JIA and content analysis to further investigate the suitability of the IPQ-R to assess beliefs. Transcripts were analysed identifying problems or inconsistencies with IPQ-R use. Adolescents' ways of coping with JIA were investigated using the somatic experience module of a computer-based interview, 'In My Shoes' (IMS). To evaluate the third component of the CS-SRM, quantitative data were used in a longitudinal mediation analysis to investigate the extent to which emotional representations and pain predicted physical behaviour (n= 50). To address the second aim of this PhD, Version 1 of the Pain Perception Questionnaire for Young People (PPQ-YP) was devised and sent to 18 healthy adolescents (11- 16) to assess linguistic validity and face validity of the items using a recent pain to answer items and provide feedback on language and length. The psychometric properties of a revised version were tested with 76 adolescents with JIA. Results: Adolescents' responses to having JIA were driven by their emotional and cognitive responses to symptoms (in this case pain) rather than illness beliefs per se. Thus, it is important to assess pain beliefs rather than broader illness representations. The need to preserve their social identity as 'normal' was a coping goal shared across the sample, however different strategies were identified, either to focus on maintaining normal activities or to attend to pain directly. Adolescents who focused on their pain held a more negative emotional representation, reported higher pain and lower functionality compared to adolescents who tried to maintain normality. Based on these results, longitudinal mediation models investigated the role of emotional representations and pain in predicting physical behaviour. Pain mediated 44% of the relationship between emotional representations and physical behaviour. Conclusions: Modifications to the model are recommended to take into account the role of social identity in the process of developing illness behaviours as well as the importance of a symptom driven conceptualisation of the condition.
- Illness Perceptions
- Pain Beliefs