© Springer-Verlag Italia 2015
Edward Callus and Emilia Quadri (eds.)Clinical Psychology and Congenital Heart Disease10.1007/978-88-470-5699-2_44. Adjusting to Congenital Heart Disease in Adolescence: The Role of Patients’ Personality and Self
(1)
School Psychology and Child and Adolescent Development, Department of Psychology, KU Leuven, Tiensestraat 102, 3000 Leuven, Belgium
(2)
Centre for Health Services and Nursing Research, Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35 blok d, 3000 Leuven, Belgium
During the last couple of decades, major advances in medicine have resulted in an increasing number of adolescents and emerging adults living with congenital heart disease (ConHD) [1]. The emergence of this growing population poses new challenges to healthcare because many of these youngsters suffer from the medical and psychosocial consequences of their illness. Indeed, adolescents with ConHD are generally seen as a high-risk group in terms of psychosocial functioning [2]. In addition to several physical and neurocognitive changes, role expectations change substantially during this period in life. Adolescents are expected to form intimate friendships, to grow independent from parents and establish a social network of their own, and to develop into mature individuals adopting various social and societal roles [3]. These multiple changes in biological and psychosocial domains are generally found to be reflected by changes in personality and self–concept, as adolescents tend to move toward a more mature sense of self [4]. However, adolescents with ConHD not only have to deal with these developmental demands; they are confronted with several illness-specific challenges as well. For instance, many patients struggle to cope with the uncertainty regarding illness course and prognosis, difficulties with fitting into the peer group, symptom burden (e.g., cyanosis, lack of energy, and shortness of breath), and physical activity restrictions [5]. Hence, studies are increasingly focusing on patients’ quality of life and self–rated health. Self-rated health has been shown to be a powerful predictor of health outcomes – including mortality – in both community and patient samples, even after accounting for objective health status, health behaviors, and sociodemographic factors [6].
To understand why some patients show poor quality of life and self-rated health whereas others display signs of resilience, research on potential determinants of quality of life and self-rated health is urgently needed. A potentially important determinant that has not received much attention to date is patients’ personality and self-concept. Extensive research has linked Type A (characterized by hostility, time urgency, and competitiveness) and Type D personality (characterized by negative affect and social inhibition) to mortality and adverse health outcomes in patient groups with acquired cardiovascular pathologies [7–9]. In contrast, the personality and self-concept of individuals with ConHD has received little to no attention in the literature. This chapter therefore aims to summarize the current research literature on personality and self-concept in adolescents with ConHD.
4.1 A Brief Introduction into Personality and Identity
One of the most important developmental tasks during adolescence is establishing a strong and mature sense of self [3]. According to a recent model of personality development, an individual’s sense of self has to be assessed at different levels of analysis to obtain a thorough view on his or her personality configuration [10]. Personality traits are typically seen as constituting the basic level of analysis. These traits describe the most fundamental personality differences between individuals that account for consistencies in how they act across situations and over time. However, people do more than merely act in more-or-less consistent ways as determined by these relatively enduring or stable personality traits. As agents of their own development, people make motivated identity choices, plan their lives, and strive for certain goals [10]. For instance, although an individual may be characterized by a lack of self-discipline in various areas in life (and, hence, might score relatively low on conscientiousness), he or she might be motivated to achieve certain goals in a specific area in life which he or she deems especially important for his or her personal identity. Hence, it is critical that studies focus on both personality traits and other self-related variables such as identity, representing important core (or relatively stable) and surface (or more malleable) characteristics of an individual’s sense of self.
4.1.1 Personality Traits as Core Characteristics of the Self
Nowadays, most researchers agree that the basic level of personality can be subsumed under five broad traits: extraversion (energy, sociability, and experiencing frequent positive moods), agreeableness (kindness, empathy, and cooperativeness), conscientiousness (self-discipline, organization, and responsibility), emotional stability (the ability to deal with negative emotions), and openness to experience (the way an individual seeks and deals with new information) [11]. These Big Five personality traits have been proven valuable predictors of physical and psychological health in both community and patient samples [12–15]. In adolescents with asthma, for instance, several of the Big Five personality traits were found to predict patients’ quality of life above and beyond the effects of sex, age, ethnicity, and education level [14]. In youngsters with type 1 diabetes, similar findings were obtained. That is, the Big Five personality traits were found to predict several problem areas in diabetes above and beyond the effects of sex, age, and illness duration [15].
Personality traits are believed to predict these health outcomes in both a direct and indirect manner. According to the psychophysiological model, for instance, the tendency to experience stress and negative affectivity may directly affect an individual’s metabolism, immunity, and cardiovascular system [16]. However, personality traits may also predict these health outcomes indirectly through their relation with coping, illness perceptions, health-threatening behaviors (such as substance abuse), and treatment adherence (in case of chronic illness) [16]. Adolescents low in emotional stability and conscientiousness, for instance, have been found to report higher rates of noncompliance with treatment guidelines, putting them at risk for future health complications [17]. Such knowledge allows healthcare professionals to intervene before patients become nonadherent and engage in health-threatening behaviors. Furthermore, individuals low in emotional stability and conscientiousness have been found to use more avoidant and passive ways of coping in dealing with daily stressors, including illness-specific challenges [15]. These passive and avoidant ways of coping, in turn, have been linked to illness-related problems [15].
4.1.2 Identity Dimensions and Statuses as Surface Characteristics of the Self
Besides the Big Five personality traits constituting a first or basic layer of the self, processes of personal identity formation constitute an additional layer of the self, especially in adolescence [10]. Adolescents have to address the self-defining question: “Who am I and where do I want to go with my life?” Identity formation is typically measured using the key dimensions of exploration and commitment [18]. Whereas exploration entails a search into different life alternatives (e.g., “Do I want to become a psychologist or a lawyer?”), commitment signifies the adherence to a specific choice and the implementation of this choice in daily life.
Using these different dimensions, recent studies have identified five to six identity statuses (reflecting different ways an individual can address identity-related questions at a certain point in time) in both community and patient samples [19, 20]. Individuals in the achievement status typically showed firm identity commitments preceded by a thorough exploration of identity alternatives. For instance, they want to become lawyers because they thoroughly reflected about it and fully identified with this choice. As such, they achieved an identity through a period of experimentation and exploration. Similar to individuals in the achievement status, individuals in the foreclosure status showed strong identity commitments. However, these commitments were made without much prior exploration. For instance, they want to become lawyers simply because their mother or father is a lawyer. Although individuals in the achievement and foreclosure statuses seem to function quite similarly on variables such as self-esteem, achieved individuals who explored various possibilities and chose the one option that suited them best typically score higher on variables such as life satisfaction and intrinsic motivation [21]. Hence, although having strong identity commitments benefits individuals in their daily lives, having commitments that are self-endorsed (as is the case especially in the achievement status) leads to even better functioning in certain life areas.
The remaining statuses consisted of individuals characterized by relatively weak identity commitments. In contrast to the achieved and foreclosed statuses, these individuals lacked strong guiding commitments in daily life. Individuals in the moratorium status were currently uncommitted but they launched themselves in the exploration process to seek out various identity alternatives. This exploration, however, was often accompanied by high distress and worries over the future. Finally, individuals in the diffusion statuses also scored low on commitment but, as opposed to the moratorium individuals, they did not engage themselves in a purposeful exploration process. Individuals in the carefree diffusion cluster rather seem to enjoy this uncommitted state, live from day to day, and do not feel the urge to engage in a lot of identity work. Individuals in the troubled diffusion cluster, on the other hand, continuously worry where their lives would lead them, but, due to a lack of both internal and external resources, they do not succeed in proactively tackling the identity questions they are facing. They seem to be stuck momentarily in a state of worry and rumination.
Previous research in community samples has demonstrated that the ways in which adolescents tackle identity issues can have important implications for their daily functioning [19]. More specifically, adolescents who kept on postponing identity-related decisions or kept on worrying about where their lives should lead them were found to experience various psychosocial difficulties, such as increased levels of depressive symptoms and lowered self-esteem. In contrast, adolescents who purposefully explored various future possibilities and succeeded in committing to certain life decisions were found to be the most resilient individuals. Yet, few studies to date have looked at associations between identity processes and illness functioning in adolescents with chronic illness. In one of our studies in emerging adults with type 1 diabetes, identity processes were differentially related to the ways in which patients coped with and adjusted to their illness [20]. More specifically, the identity statuses representing a strong sense of identity were accompanied by fewer diabetes-related problems and depressive symptoms and more adequate coping strategies.
Taken together, the findings obtained from previous research in community and patient samples indicate that the establishment of a strong personalized identity and the development toward a mature personality profile are closely related to adolescents’ physical and psychological health. Hence, we believe that research looking at the physical and psychological health of adolescents with ConHD should pay more attention to these key developmental tasks.
4.2 What About Individuals with Congenital Heart Disease?
Despite the fact that extensive research has linked Type D personality (which is basically a combination of low extraversion and low emotional stability) to mortality and adverse health outcomes in patient groups with acquired cardiovascular pathologies [8, 9], the personality and self-concept of adolescents with ConHD has received little to no attention in the literature. For instance, few studies to date have examined in depth whether there are systematic differences between patients and controls in terms of their personality. However, it is crucial for future research to examine whether these patients have an increased risk for developing certain self-related vulnerabilities, given that a strong sense of self has been repeatedly associated with patients’ physical and psychological health [22, 23].
According to a recently forwarded model of person–environment transactions, changes in an individual’s personality and self-concept can be triggered by changing roles, life events, and/or daily challenges [24, 25]. For instance, making the transition from high school to college can lead to increases in independent functioning. Along these lines, having a chronic illness such as ConHD can be expected to shape youngsters’ sense of self, given that chronic illness is typically conceptualized as a biographical disruption requiring a fundamental rethinking of an individual’s self-concept [26]. For instance, adolescents with ConHD (and especially those with a more complex defect) might report lower levels of emotional stability, due to the fact that they have to deal with the additional challenges imposed by their illness. In the next sections, we review the limited research focusing on comparisons between individuals with and without ConHD in terms of personality and identity.
4.2.1 Differences in Personality and Identity Between Patients and Controls
Personality. A recent study by Schoormans and colleagues [27] was the first to date to investigate in depth the personality of individuals with ConHD. More specifically, this study examined the point prevalence of Type D personality (defined as a cutoff score of 10 or more on the social inhibition and negative affectivity subscale of the DS14 and, thus, operationalized as a dichotomous variable) in a large sample of adults with ConHD. Approximately 20 % of patients were found to score above the cutoff of having a Type D personality, which is quite similar to the prevalence of Type D personality in the general adult Dutch population (18–21 %) [28]. Interestingly, this point prevalence is slightly lower than the one found in other cardiac populations, such as adults with myocardial infarction (24 %) or congestive heart failure (25 %) [29, 30]. The slightly higher prevalence of Type D personality in cardiovascular patients might stem from the fact that Type D personality has been linked to the pathogenesis of acquired heart diseases [8, 9]. Furthermore, Schoormans and colleagues [27] did not observe any differences between Type D and non-Type D patients in terms of illness complexity, as conceptualized by Task Force 1 of the 32nd Bethesda conference [31]. Hence, patients with a more complex defect were not more likely to display a Type D personality profile as compared to patients with a defect of simple or moderate complexity. Although this recent study has provided us with important insights, personality research in cardiac disorders should be expanded beyond assessing Type D personality.
As mentioned earlier, an alternative framework that can be valuable for research aimed at understanding linkages between personality and illness functioning is the Big Five of personality. In a recent study at our center [22], we explored similarities and differences in Big Five scores between a large sample of adolescents with ConHD and a sample of healthy adolescents matched (1:1) on sex and age. This study was part of a larger project called i–DETACH (information technology Devices and Education program for Transitioning Adolescents with Congenital Heart disease), a project in which adolescents between the age of 14 and 18 are followed over a period of 4 years. Each year, these adolescents are asked to fill out questionnaires concerning their physical and psychosocial health, personality characteristics, and identity processes. The findings of this study suggested normalcy rather than deviance in patients’ personality profiles, as few differences were found in Big Five scores between adolescents with and without ConHD. Nonetheless, adolescents with ConHD were found to score significantly lower on extraversion as compared to healthy controls. As activity level constitutes a central feature of extraversion [32], patients’ lower levels of extraversion might be partially explained by their lower activity level, resulting from the physical complaints accompanying their illness (e.g., dyspnea). Similarly, positive affectivity is generally considered one of the central features of extraversion [32]. Possibly, adolescents with ConHD experience fewer positive emotions, having to deal with the worries and challenges of their illness, further lowering their extraversion scores. However, little systematic knowledge is available on the extent to which adolescents with chronic illness (and with ConHD in specific) experience positive affect, so this latter explanation needs to be addressed in future research efforts. A final alternative explanation for patients’ lower extraversion scores could be found in the process of normalization, which is commonly observed in adolescents with ConHD. Normalization refers to patients’ struggle with themselves and their environment to be accepted as “normal” [33]. From this point of view, an extraverted personality might be less warranted for adolescents with ConHD who do not want to stand out and just want to be like everybody else. Indeed, Rigby and Huebner [34] already pointed out that the desire not to stand out might reduce the advantages of high extraversion among certain adolescents.
Finally, although one might expect adolescents with a heart defect of greater complexity to face additional stressors that may impact upon their personality development, no mean differences in Big Five scores were observed between adolescents with a simple, moderate, and complex heart defect. Hence, no evidence was found for delayed personality maturation in adolescents with a more complex heart defect.
Identity. In two of our recent studies [23, 35] based on the i-DETACH project, similarities and differences in identity formation were examined between adolescents with ConHD and a sample of healthy adolescents matched (1:1) on sex and age. Patients were found to show lower levels of both identity exploration and worry as compared to their healthy peers. More specifically, adolescents with ConHD were slightly underrepresented in the moratorium and troubled diffusion statuses and slightly overrepresented in the carefree diffusion status. Possibly, some of these patients perceived fewer opportunities to explore identity-related issues when dealing with the challenges of their illness. Furthermore, patients might be less inclined to reflect on future options because of perceived restrictions on future possibilities due to their illness [36]. However, despite these minor differences, adolescents with ConHD were found to tackle identity issues in a way similar to what their peers did, testifying to the resilience these patients display. Furthermore, similar to the findings presented above on the Big Five personality traits, the different identity statuses were unrelated to the complexity of patients’ heart defect. Hence, more complex diagnoses do not seem to be associated with a more problematic identity formation process.
Taken together, these findings show that, although growing up with ConHD constitutes a big challenge for some adolescents, patients are generally as competent as their peers in addressing the developmental task of identity formation and in developing a mature sense of self. Nonetheless, some patients were found to struggle with establishing a strong sense of self, which then might negatively impact on their physical and psychological health. Indeed, although personality and identity are not implicated in the pathogenesis of ConHD, they could potentially affect patients’ prognosis, health outcomes, and illness functioning. That is, mature personality characteristics (e.g., being conscientious and emotionally stable) could help patients in dealing with illness-related challenges, thereby playing favorably into their illness functioning [14]. Conversely, certain personality characteristics (e.g., the tendency to experience negative affect) may put patients at risk for illness-related problems such as the inability to deal adequately with certain life restraints due to their condition. In the next sections, we review the limited research focusing on the role of personality and identity for patients’ physical and psychological health.
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