Overview of Portfolio:

Inherited cardiac conditions (ICCs) can present significant challenges for individuals and their families, particularly when diagnoses occur unexpectedly in asymptomatic young people, or following a sudden cardiac event. Much of the existing research exploring the psychosocial impact has used quantitative measures, focused on experiences at the time of genetic testing, following sudden cardiac death or sudden cardiac arrest survivorship. Less is known about the longer-term lived experiences of individuals and their family members following an ICC diagnosis, how families collectively experience and respond to the diagnosis, and how this may affect family relationships and dynamics. Understanding these experiences may help inform how healthcare professionals support individuals affected by ICCs and their family members.

The two papers draw on an overlapping sample of participants (the two families participated in both studies through one interview schedule) and a mutual aim to understand the impact of ICC diagnoses on individuals and family members. The papers address related, but distinct research questions to explore this from different perspectives. Part A of this portfolio presents an empirical study exploring how families collectively respond to an ICC diagnosis at the level of family relationships and dynamics. The findings of the study suggested that families experienced shifts in communication, roles, and relationship dynamics following an ICC diagnosis, providing insight into how families experience and navigate its impact as a relational unit.

Part B presents a second empirical paper focusing on exploring the lived experiences, psychological responses, coping processes, adjustment and support needs of individuals diagnosed with an ICC and family members. The findings highlight that both individuals and family members experience a range of psychological experiences following diagnosis, including disruptions to normality, varied coping responses, processes of adjustment over time, and ongoing psychological support needs.

Together, the papers contribute to a deeper understanding of the ways in which ICC diagnoses affect both at an individual and family-level over time, with insights and implications for how healthcare and other professionals involved in their care can best support those affected by ICCs.