Almost Normal: A Practice-Oriented Conceptual Model of Adolescents Living with Implantable Cardioverter Defibrillators
Zeigler, Vicki L., Tilley, Donna Scott, Journal of Theory Construction and Testing
Being an adolescent with an implantable cardioverter defibrillator (ICD) is unique experience that requires astute observation and informed nursing practice. The Almost Normal Model for Adolescents Living with ICDs, a conceptual model, was derived from the findings of a qualitative study with adolescents living with ICDs. The constructs of the model include: Life Interrupted, Sometimes it's Tough, It Cuts Both Ways, Still the Same Except, Transcendental Acceptance, and Living a Regular Life. Presented here in its first iteration, this model provides a window into the experience of adolescents with an ICD from the time of initial implant to their eventual adjustment - driven by a desire for normalcy. Although refinement and model testing are needed, this model may guide interventions and provide insight for those who care for adolescents with ICDs.
Key Words: Adolescent, conceptual model, implantable cardioverter defibrillator, nursing practice, psychosocial issues
J.S. was hospitalized for the first time at the age of 15 years. He was diagnosed with the congenital form of Long QT Syndrome after an episode of syncope during basketball practice, was an outstanding basketball player, but his aspirations for a future in basketball disappeared with his new diagnosis: a primary electrical abnormality which predisposed him to lethal cardiac arrhythmias and sudden cardiac death (SCD). Not long after his diagnosis, medication was started and plans to insert an implantable cardioverter defibrillator (ICD) were made. The device was successfully implanted, and J. S. was discharged from the hospital.
A few months after his discharge from the hospital, J. S. was readmitted for recurrent syncope and medication adjustment. During this hospitalization, he expressed concern regarding his family situation, having an ICD, and not being able to play basketball anymore. A psychokgical consult was recommended, but he refused. Two months hter, J.S. committed suicide.
J.S.'s story depicts a hard reality for adolescents with lifethreatening cardiac arrhythmias (LTCA). Pediatric patients who experience LTCA or familial diseases that put them at risk for SCD must undergo treatment rapidly with little time to assimilate the complex, chronic nature of the condition. Treatment for LTCA often entails surgical implantation of an ICD. Though the treatment of using an ICD for a child or adolescent is the same as that for adults, the experience of the adolescent is influenced by developmental issues. The presence of LTCA alone during adolescence typically creates much anxiety, which can be exacerbated by implantation of a device designed to prevent SCD.
Nurses caring for adolescents do not fully understand how to support their vulnerable patients during this traumatic but important journey (DeMaso, Neto, & Hirshberg, 2009). Understanding their experience is essential to facilitating a successful transition from living life as a normal, healthy teen to living life with an ICD. The model presented here, Almost Normal: A Model for Adolescents Living with Imphntable Cardioverter Defibrillators (see Figure 1), explains the journey for adolescents with ICDs, and offers nursing interventions for facilitating a positive experience. Fawcett's criteria for theory evaluation (Fawcett, 2000) were used to outline the following discussion, which includes the origins of the model, the philosophical framework, strategies for model formulation, constructs of the model, focus of the model, and implications for nursing practice.
Origins of the Model
Life-threatening cardiac arrhythmias are relatively uncommon in children and adolescents. Pediatric patients experiencing LTCA and the subsequent placement of ICUs, however, have specific physical and developmental needs. It is important that nurses and othet health care providers understand these special needs and be ready to address those needs with informed responses. …