Asymptomatic long QT syndrome : a qualitative exploration of adolescent and parent experiences of living with the risk of a sudden arrhythmic death

The sudden death of a' child is a risk that families with Long O'T syndrome face. Preliminary research has shown that young people and their families with both Long O'T syndrome and asymptomatic Long O'T syndrome are at risk of developing psychological difficulties. To date however, the psychological processes that mediate the challenges associated with Long O'I syndrome within the context of adolescent development have not been fully explored. The present study conducted in-depth individual interviews with five young people aged between 12 and 15 years with a diagnosis of asymptomatic Long O'T syndrome and one of their parents/carers. The cross sectional research employed a qualitative approach, using Interpretative Phenomenological Analysis (IPA) to make sense of the lived experiences of young people and their parents/carers . . The analysis of the parent/carer data yielded four main themes: A Horror Story, Loss, Living with Risk and Coping and Getting on with it. Two themes emerged from the young people's data: Multi-faceted Identity and Loss. Both young people and their parents appear to find challenging; negotiating autonomy and independence in the context of the associated risk with Long O'T syndrome. The difficulties young people and their parents faced appeared to persist in the period following diagnosis. Participants expressed that, whilst able to express some hope for the future, the associated risks with Long O'T syndrome remained a mediating factor as ultimately these parents/carers are being confronted with the possible- mortality of their children. The current study facilitated the exploration of how living with the condition and the associated risks affects the lives of young people their parents, mediates their relationship and in turn affects the developmental process. The current study 3 highlighted the distressing impact of the condition for parents and the long term global consequences the condition has upon the entire system. The study states relevant clinical implications and makes suggestions for future research. 4EThOS - Electronic Theses Online ServiceGBUnited Kingdo