O4. How Do Carers of Newly Diagnosed Patients Learn About Rheumatoid Arthritis? Findings of a Serial Qualitative Study

Abstract

have been interviewed, some on more than one occasion, plus 10 trusted others (typically mothers). In addition a small number of recordings of consultations (n1⁄44) have been made. Data has been analysed using coding, memoing and mapping techniques. Results: We found young people initially keen to stress their independence of thought and action, typically intimating that people (other than health professionals) had limited influence. However, subsequent discussion revealed that a number of other people are involved in the reaching and enacting of major treatment decisions. The cast of trusted others is both consistent and relatively small. It is dominated by close family members and, irrespective of age, mothers play a prominent role in the accounts of most young people. Mothers’ involvement is distinctive for spanning practical, cognitive and emotional issues. Young people appear circumspect about involving partners in treatment decisions and in this respect our findings bring into question the applicability of generic—adult—models of decisionmaking. Compared with mothers, members of the wider cast of trusted others are involved in more limited but still potentially significant ways. For example, there is evidence that contact with other young people with health issues can directly and indirectly influence deliberation. Involvement of healthy peers, in contrast, seems limited and highly selective, with young people fearing the consequences of disclosure, or doubting the capacity of this group to understand. Conclusion: Young people claim autonomy but other people enable this: mothers in particular remain involved in treatment decisionmaking into young adulthood. However, other people may have an important influence on deliberation too. The distinctive and evolving network of relationships in which young people are embedded must be taken into account if the support provided to them by professionals is to be optimally tailored to their needs. Disclosure statement: The authors have declared no conflicts of interest.