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Study Overview This study, conducted by Erin McKnew, a clinical psychology doctoral student attending the Wright Institute in Berkeley, California, explores the experiences of young women with an ICD. Her interest in the subject stemmed from the personal experience of having an ICD. This project offered participants the opportunity to share their ICD story and contribute to a better understanding of the female ICD experience, which helps health care providers better meet the needs of women with ICDs. Below is Erin McKnew's summary of her study. Study Summary
The Implantable Cardioverter Defibrillator (ICD) is a small electronic device inserted under the collarbone designed to detect and abort life-threatening arrhythmias. Unlike other implanted devices, the ICD provides lifesaving therapy through the delivery of powerful shocks. Typically, ICD recipients are older men and as a result, most research reflects this demographic. Few studies have investigated young adult ICD recipients, and to date, the young adult female ICD experience has not been exclusively examined in qualitative or quantitative research. This exploratory study was designed to address the preceding gap in the literature. To investigate the lived experience of female ICD recipients aged 18 to 40, semi-structured interviews were conducted and analyzed according to Interpretative Phenomenological Analysis (IPA), a qualitative methodology. Nine participants reflected on four research topics: getting an ICD, the physical device experience, the individual’s relationship to the ICD, and the device’s impact on lifestyle. The 34 resulting themes were arranged into five domains: getting an ICD, the body experience, post-implant psychological acclimation, the social context, and the ICD’s impact on lifestyle. Further thematic interpretation yielded four factors significant in understanding the multi-layered young adult female ICD experience, including the ICD as a concrete entity, the device’s symbolic meaning, developmental experiences, and gender-specific issues. The latter two factors are of particular importance as they differentiate these individuals from the general ICD population. In sum, the ICD impacted many aspects of these young women’s lives, evoking varying degrees of physical pain and psychological distress, especially early in the device experience; however, the ICD also provided the ultimate security and in some cases actually preserved life. Although considered an at-risk population, these young women found ways to cope with, and adapt to, device-related distress, and lead active and meaningful lives. Ultimately, this study highlights the idiosyncrasies and commonalities across participants’ experiences and provides a preliminary framework for understanding the young adult female ICD experience. Major findings are discussed in the context of surrounding literature, which is followed by an examination of clinical applications, strengths and limitations, and suggestions for future research
Please contact us at the SADS Foundation (sads@sads.org) if you have any questions about this study.