Abstract
Sudden cardiac death is the second biggest cause of death in the UK and at least 12 young people aged 14 to 35 die each week from undetected cardiac conditions. Cardiac screening, 12-led ECG test, has been speculated to have 90% effectiveness for illness detection. The UK National Screening Committee does not mandate population screening because there is not enough evidence for the cost-effectiveness and psychological costs to the individual. Yet, measuring the effectiveness of a screening relies on its participants. Literature to date offers some explanations for participation and non-participation; however, there is no literature for parents’ decision-making processes for cardiac screening for adolescents aged 14-17. Therefore, this research has emerged from the need to understand the cognitive and affective processes that explain the decisions whether or not to take part in cardiac screening. In particular, Weinstein’s (1988) Precaution Adoption Process Model (PAPM) is used to identify of the stages of engagement for a non-apparent, a relatively unknown health risk, and investigated role of affect in decision-making. Initially, we explored retrospective accounts of non-participant families with a qualitative study and found that parents are primary decision-makers and organisations providing screening have a fundamental role for communicating credibility, task importance and salience under uncertainty. Furthermore, we have explored decision-making with a concurrent think aloud study and found that “feelings-of-risk” provide a first step in engagement with health risk. Collectively, we assessed these findings with a prospective mixed methods study in which parents of adolescents were staged according to PAPM. The results indicate that the respondents’ trust and confidence in the organisation and the screening procedure provides the first steps from being unaware, unengaged and needing more information whilst "feelings-of-risk" is integral for deciding whether or not to have screening. The reasons for non-participation is characterised as being unfamiliar (unaware), having low trust in the processes of the organisation (unengaged), low decisional certainty (need info), low concern (not intend) and having practical barriers (non-participant intenders). The implications of the results are considered for theory, research and practice.