Abstract
Objectives. Young people with inflammatory arthritis can have severe disease warranting biologic therapy. They face complex treatment decisions, with profound consequences. This study aimed to explore the influence of individuals outside the care team (trusted others) on the treatment decisions made by young people, in particular their decisions about biologic therapies.Methods. Young people (16–25 years of age) with inflammatory arthritis and experience of treatment decision making were recruited from three NHS Hospital Trusts. Twenty-five were interviewed, plus 11 trusted others identified by young people as being involved in their decision making, as well as 6 health professionals. The data were analysed using coding, memoing and mapping techniques and the findings were tested through a series of focus groups.Results. Young people initially emphasized their decisional autonomy, typically describing people other than health professionals as limited in influence. However, discussions revealed the involvement—in deliberation and enactment—of a range of other people. This cast of trusted others was small and largely consistent; mothers played a particularly prominent role, providing cognitive, practical and emotional support. Members of the wider cast of trusted others were involved in more limited but still significant ways.Conclusion. Young people claim autonomy but other people enable this. The network of relationships in which they are embedded is distinctive and evolving. Mothers play a supporting role well into early adulthood; in contrast, partners are involved in far more limited ways. As such, the applicability of adult models of decision making is unclear. This must be taken into account if the support provided by professionals is to be optimally tailored to young people’s needs.
Highlights
Recent years have seen important changes in the clinical management of inflammatory arthritis, in particular the widespread use of biologic therapies in both paediatric and adult services
The applicability of adult models of decision making is unclear. This must be taken into account if the support provided by professionals is to be optimally tailored to young people’s needs
Young people offered biologics are confronted with a decision that may have profound consequences, at a point when their disease is at its worst and their wider lives are characterized by change and uncertainty
Summary
Recent years have seen important changes in the clinical management of inflammatory arthritis, in particular the widespread use of biologic therapies in both paediatric and adult services. There are short-term risks (e.g. increased vulnerability to infection), and the long-term consequences of these treatments (e.g. impact on fertility, risk of malignancy) remain uncertain [2]. This is of particular concern for those who begin taking them early in life. Young people offered biologics are confronted with a decision that may have profound consequences, at a point when their disease is at its worst and their wider lives are characterized by change and uncertainty
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
