|
Article Excerpt
Paul, who is accompanied by his parents and three healthy adolescent siblings, is a frequent visitor to the Cardiac Care Unit at the local hospital. It is evident that Paul is different from other teenagers because of his hirsutism, slightly awkward gait, pale appearance, and short stature when compared with his parents and siblings. He walks noticeably slower than his brothers and sister, and appears to be much too reserved for a 15-year-old. These characteristics are common in children with congenital heart disease.
Paul was diagnosed at birth with a congenital cardiac defect, and he has required risky and extensive staged surgical interventions and multiple hospitalizations to maintain and optimize his health. He is now at the social and emotional developmental stage described by Erik Erikson (Berk, 2003) known as Identity versus Role Confusion demonstrated by his preoccupation with his delayed pubertal appearance and body image. There are occasions when Paul dissolves into tears from his seeming inability to stay out of the hospital. What can nurses as clinicians do to support him through this difficult period of transition?
Thirty years ago, children with simple cardiac conditions resulting in cyanosis were referred to as "blue babies," and those with complex cyanotic conditions (such as Tetralogy of Fallot, Hypoplastic Left Heart Syndrome) were not expected to (nor did they) survive. However, since Dr. Christian Barnard performed the first human open heart allotransplant in Cape Town, South Africa, in 1967 (Milanesi et al., 2007), there have been multiple, varied advances in the specialty of pediatric cardiac surgery. Conditions once considered fatal have become chronic health conditions as a result of new technologies and surgical methods. For example, children with congenital heart defects may now survive into early adulthood and require transitional care by health care providers.
Consequently, there is a sizeable population of patients who have overcome insurmountable odds due to their congenital heart anomalies and have reached adolescence. Current estimates indicate that there are more than 800,000 adults living with chronic heart disease due to congenital defects (Cook & Higgins, 2004). These individuals chronically deal with complexity and uncertainty regarding their medical future and the many associated psychosocial issues (Cook & Higgins, 2004; Huang, Wang, & Chert, 1996). Depression is common in this child sub-population during the teenage years (Lip, Lane, & Millane, 2003). These adolescents, who may struggle to cope with normal developmental tasks, have the added uncertainty associated with a life-threatening condition and face complex daily medical routines, frequent hospitalizations, and invasive surgical interventions associated with their chronic illness.
Nurses are privy to some of the most stressful moments in the life of a teenager with a chronic cardiac condition, and at times, are contributors to that stress by administering unpleasant treatments and participating in painful and invasive procedures. Issues begin to surface surrounding confidentiality, responsibility for care and treatment decisions, and shifting responsibilities for self care when dealing with adolescents transitioning into adulthood. Therefore, it is important to learn how to help these teens positively cope with their chronic health condition, which is likely to impact optimal medical management of the chronic condition. Expert groups suggest that a structured plan be developed to transition the care of a chronically ill adolescent (Landzberg et al., 2001). These plans often involve steps to transition the medical care of complex cases to specialized adult health care providers; however, the psychosocial care of the developing teen, who may be developmentally and emotionally delayed, and role of parents and families is less clear in the expert recommendations for transition plans. One way to facilitate this process may be to encourage a supportive family network for the teen.
Search for the Evidence
To understand the effect of the family's supportive role on the outcomes (for example, coping) of teens with congenital heart disease, the following clinical PICO (Patient, Intervention, Comparison group, Outcome) question was posed: Does family involvement and psychosocial support (Intervention) influence the coping (Outcome) of teenage patients who have congenital heart disease (Patient) compared with the coping outcomes of those similarly afflicted teens with limited social or family support (Comparison group).
Literature Search
Multiple combinations of the keywords "adolescent or teen, congenital heart disease, outcomes or coping, and family support" were used to search the Cochrane, CINAHL, Medline, and Psychlnfo databases; however, very limited evidence was found. The search of the Cochrane Library resulted in one review report that revealed that there were no individual studies (level II evidence) meeting the rigorous systematic review criteria that would result in level I evidence (see Figure 1) (Lip et al., 2003). The authors indicated that reports of three studies included children less than 15 years of age (Pereira, Perini, Daudt, & Rossi, 1995; Wang & Huang, 1996; Weiss, 1992) were identified in their exhaustive search. Two of those studies were controlled trials of psychological intervention studies for young patients with congenital heart disease (Wang & Huang, 1996; Weiss, 1992); however, one was conducted and published in Chinese greater than 10 years ago (Wang & Huang, 1996), and the other was conducted with infants (Weiss, 1992), and therefore, neither was helpful in this review. Due to the limited published research specific to the coping outcomes of teens with congenital heart disease, this searching strategy was expanded to include studies with a sample population of adolescents with a chronic health condition and explored the impact of family involvement on child/teen outcomes. A search of the literature for individual studies using the aforementioned databases produced nine articles (see Table 1).
Figure 1. Glossary of Significant Terms Adolescence--The process of transitioning from childhood into adulthood (Berk, 2003). Alotransplant--To transfer an organ or body tissue between two genetically different individuals belonging to the same species (Allen & Vessey, 2004). Bias--Divergence of results from the true values or the process that leads to such divergence (Melnyk & FineoutOverholt, 2005). Congenital Heart Disease--A cardiovascular malformation is present from birth (Burns, Dunn, Brady, Starr, & Blosser, 2009). Generalizability--The extent to which the findings from a study can be generalized or applied to the larger population (for example, external validity) (Melnyk & Fineout-Overholt, 2005). Hirsutism--Having abundant hair on the face or body. Identity vs. Role Confusion--Adolescents build on all earlier experiences to develop a sense of self-identity. Failure to reach this goal may cause confusion in sexual...
|
