A Needs Analysis of Parents Following Sudden Cardiac Death in the Young

Abstract

ABSTRACTThe sudden cardiac death (SCD) of a young person is a devastating event for any parent. Inherited heart disease is often either identified or assumed to be the cause. Few studies have explored the psychosocial impact to the surviving at-risk family members. We sought to investigate the needs of parents who have experienced the SCD of their child (≤45 years). A quantitative needs analysis questionnaire was developed based on semi-structured interviews, including one focus group, and a review of relevant literature. There were 38 parents who completed a cross-sectional quantitative survey. Parents’ perceived needs for information and support spanned medical, psychosocial, spiritual and financial domains. Medical information and support needs were identified as the most important domains, followed by psychosocial, spiritual and financial information and support needs. Importantly, psychosocial information and support needs were reported as the most unmet need, endorsed by 54% of parents. Medical information and support needs were reported as unmet by almost one third of parents. The two most endorsed needs were “To have the option of whether or not you would pursue genetic testing for yourself or family members” and “To understand what happened”. This work demonstrates for the first time, the multifactorial needs of parents after SCD in the young. With the greatest unmet need reported as psychosocial needs, there is clear necessity to find ways of integrating psychological support in to the care of families after SCD in the young.KEY QUESTIONSWhat is already known about this subject?There is currently very little known about the needs of families following a sudden cardiac death due to inherited heart diseases. We know there is significant risk of poor psychological outcomes including posttraumatic stress and prolonged grief, even years after the death, however this is one of the first studies to formally evaluate the needs of parents during this time.What does this study add?We show that medical information and support needs are ranked very highly, but psychosocial support needs are the most unmet. Our findings provide a platform for developing an approach to delivering psychosocial support interventions in this population.How might this impact on clinical practice?Currently clinical and research efforts in this setting focus on clinical and genetic aspects of care. Here we show the critical need to also focus on the psychological care needs in this population. These data will help to guide services in integrating psychological support in to their multidisciplinary clinic models.