Purpose: The overall purpose of this scoping review is to address a gap in the literature specific to risk-taking behaviors among adolescents (age 13 to 18) and EYA (age 19 to 25) with chronic cardiac conditions. The first aim is to describe the risk-taking behaviors among adolescents and EYA with chronic cardiac conditions. The second aim is to map concepts specific to risk-taking behaviors among adolescents and EYA with a chronic cardiac conditions and compare results with the six health-risk behaviors examined in the Youth Risk Behavior Surveillance Survey (YRBSS).
Methods: Authors conducted a scoping review, a comprehensive literature review methodology, based on the framework by Arskey and O’Malley (2005), the recommendations put forward by Levac, Colquhoun, and O’Brien (2010), and guidelines from the Joanna Briggs Institute (Peters et al., 2015). Six databases (CINAHL Plus Full Text, PubMed, Web of Knowledge, Scopus, ProQuest Dissertations & Theses A& I and Grey Literature Report) were searched to verify the empirical literature between 1975 and 2018. The sources were limited to (1) human subjects, (2) English language or translatable to English, (3) participants 13 to 25 years old, (4) all research designs, (5) unpublished manuscripts, and (6) dissertations. Eligible studies addressed risk-taking behaviors among adolescent and/or EYA populations with a chronic illness or health condition. All abstracts were screened for eligibility. Abstracts were excluded from the scoping review if the primary population focused on (1) adults over 25 years old, (2) mental illness, (3) pain as the primary chronic condition, (4) chronic conditions secondary to risk-taking behaviors, and (5) healthy populations. Reference lists of relevant works were scanned to capture additional sources.
Source Selection: A total of 931 potential sources published between 1979 and 2018 were returned, and 99 (11%) underwent screening for inclusion. Seventeen sources (17%) that addressed risk-taking behaviors among adolescents and EYAs with chronic cardiac conditions underwent data abstraction.
Synthesis: The synthesis included a quantitative analysis (e.g., frequency analysis) of the types of chronic conditions, risk-taking behaviors, study designs, common data collection instruments, and outcomes that were identified across sources and a qualitative analysis (i.e., content analysis) of the similarities, differences, and conceptual definition of risk-taking behaviors. For the conceptual definition analysis, the identified types of risk-taking behaviors in each source were compared with the six health-risk behaviors examined in the YRBSS. The behaviors were analyzed and compared to determine how many types matched across each source.
Results: Among the sources that met the inclusion criteria, there were 10 quantitative (59%), two qualitative (12%), one mixed methods (6%) and four (23%) non-research sources. The nature of chronic cardiac conditions was unspecified in two (12%) sources. Three sources (18%) examined risk-taking behaviors among adolescents who had received a cardiac transplant. Nine sources (53%) examined risk-taking behaviors among adolescents with congenital heart disease (CHD), and two sources (12%) examined adolescents with rheumatic heart disease.
Eleven sources (65%) cited behaviors consistent with the six categories established for the YRBSS. A non-categorical approach to risk-taking was cited in three sources (18%). Additional risk categories that emerged through secondary review were specific to poor oral hygiene, antisocial behavior, medication or treatment non-compliance, missed appointments, tattoos, and piercings. Findings from this scoping review continue to support the premise that general risk-taking behaviors among adolescents and EYA with chronic cardiac condition fits into the six priority categories of the YRBSS.
Discussion: The emerging categories highlighted through abstraction and synthesis have been observed in adolescents and EYA with chronic cardiac conditions, but are not unique findings. Medication and treatment non-compliance is common among adolescents with diabetes and other non-cardiac chronic conditions (Wasserman, Anderson, and Schwartz, 2017). Piercing and tattoos pose a risk for healthy adolescents as well as those with chronic conditions, given risks of infection, trauma, and scarring (Hoover, Rademayer, and Farley, 2017). Poor oral hygiene can predispose a person with chronic cardiac disease to endocarditis, similar to people whose chronic condition carries higher risk for immunocompromise.
Rather, risk-taking behaviors in the presence of a chronic cardiac condition may increase the likelihood of clinical complications resulting from risk-taking behaviors, and the clinical complications are not well understood (Lesch, Specht, Lux, Frey, and Utens, 2014). Evolving therapies and treatments have extended the life expectancy, even for the most complex cardiac condition. Management that was once palliative in nature must broaden scope to incorporate strategies to support the biological and social transitions associated with normal adolescent development in the setting of a chronic cardiac disease; very little evidence-based data exists to support complex etiologies and guide patient management across the lifespan (Engelman et al., 2017; Rossano and Jang, 2016; Triedman and Newberger, 2016; Wilmot et al., 2016).
Limitations: A non-categorical approach may capture a broader range of chronic conditions by which to generalize findings, however, sources meeting inclusion criteria may have been unintentionally excluded from this review. Substance abuse may be a gateway to other risky behaviors in adolescents with a chronic cardiac condition, and this scoping review was not designed to directly address this concern. Additionally, the categorization system that was applied to this review stratified tobacco use and alcohol and other drug use into their own categories as opposed to a general category of substance abuse. Thus, gateway behaviors remain an area that requires further clarification.
Conclusion: Research exploring the impact that evolving therapies and emerging technology have on adolescents with chronic cardiac conditions is limited, and the topic of risk-taking behaviors in this population must be approached very thoughtfully. Differences in risk-taking behaviors among adolescents with chronic cardiac conditions appear to be minimal, especially when compared against other types of chronic conditions. Yet, there is still a concern that adolescents with chronic cardiac conditions are at greater risk for complications that result from risk-taking behaviors. Findings from this scoping review describe the types of risk-taking behaviors that adolescents and EYA with chronic cardiac conditions are engaging in, highlight similarities when compared to other types of chronic conditions, and serve as a foundation for future research among this population.