Interviewee

Dr Vicki Zeigler, Assistant Professor, College of Nursing, Texas Woman's University, Texas, USA

Article

Zeigler, VL & Nelms, T. (2009) Almost Normal: Experiences of Adolescents With Implantable Cardioverter Defibrillators, Journal for Specialists in Pediatric Nursing-JSPN, 14(2):142-51

Summary

Implantable cardioverter defibrillators (ICDs) prevent heart attacks by giving jolts of electricity to the heart. Their use in children and adolescents has increased steadily over the past twenty-five years, but there has been little research into the psycho-social factors affecting children and adolescents with ICDs. This week, Hamish Holewa, talks to Dr Vicki Zeigler, who has found that while the devices help adolescents feel secure because they protect them from death, many experience depression and anxiety after devices have been implanted, due to restrictions to activities, fear of future procedures and a feeling of being constantly watched. Vicki says on the positive side, many adolescents with ICDs feel like 'unique gems', because so few other children and adolescents have ICDs. They have an extreme appreciation for life and want to help others because they believe they are 'here for a reason'. They also report that having an ICD gives them an excuse to avoid unappealing activities. Vicki recommends introducing adolescents to others the same age with ICDs, looking out for depression early, so that psycho-social support can be offered, and seeing them first as adolescents, then as adolescents with ICDs.

Transcript

Hamish Holewa: Hi and welcome to IPP-SHR podcasts, I’m Hamish Holewa and for today’s podcast, I’m talking to Dr Vicki Zeigler, Assistant Professor, Texas Women’s University, College of Nursing, Texas, USA. We’re speaking with Vicki today about her article and study titled: Almost Normal: Experiences of Adolescents With Implantable Cardioverter Defibrillators. Published in the Journal for Specialists in Pediatric Nursing, and co-authored with others listed on our website. Hi Vicki and welcome to IPP-SHR podcasts. Vicki Zeigler: Thank you—I’m happy to speak with you today. Hamish Holewa: Do you want to begin this podcast by talking about the psycho-social aspects of the role of the implantable cardioverter defibrillator, or ICD, in paediatrics and young populations? Vicki Zeigler: Well, implantable defibrillators were not implanted in children right away, because they were very big. I guess, in the nineteen-eighties, ICDs were first implanted in adults, and they were mostly for adults who had suffered a cardiac arrest and there was no other treatment for them; medications didn’t work, and there was no other way to help with their survival. Hamish Holewa: Sure. Vicki Zeigler: So, in the late eighties and early nineties the devices were becoming smaller and expanded a bit to include, children, adolescents and young adults. At that time, the devices were implanted with an open-heart surgical procedure, in patients who had had cardiac arrest, and were recently expanded to include indications with children who have genetic disorders. We now are able to identify genetic components of diseases that cause life-threatening arrhythmias in children and adolescents, and those include such diseases as, hypertrophic cardiomyopathy, the Long QT syndrome, and such things that children may have anatomically normal hearts and suddenly have life-threatening arrhythmia. Very, very, little has been done on the psycho-social aspects of having an ICD in children, in particular, adolescents who are experiencing physical changes, social changes and psychological changes that are associated with being a teenager. Hamish Holewa: Sure. And your findings refer to the themes of ‘life interrupted’ and ‘still the same, except’. Do you want to talk about those findings, those insights? Vicki Zeigler: Yes—this was a qualitative study, and the fourteen adolescents that participated in the study were interviewed about their life experiences associated with having an ICD during that time-frame. The ‘life interrupted’ theme, was consistent with when they were first told they had to have the device, and how they were stunned, so to speak. One day they were playing football, or softball, or some kind of competitive sports, and the next day, they were not allowed to do that. So, their lives were kind of interrupted in a way, because they were told that: “You have to have this device,” yet, because they were not of legal age to consent, they felt like they really didn’t have a choice. They experienced an interruption of what would have been a normal life for them. The ‘still the same, except’ theme, had to do with differences that they perceived in themselves after the device was implanted. They described feelings of being the same-old-me, except for the fact that they received shocks from the ICD—if they had received a shock, only four of the fourteen, in the study, had received a shock. They described being anxious and fearful of procedures that were coming. They talked about the scar and the bump, which was their device protruding, and the scar that it caused from the surgery. They described limitations, particularly sporting activities. They also described being watched—some of them felt like their parents were watching them twenty-four-seven. And that even though they were different than before, they still considered themselves the same. Hamish Holewa: Sure—which leads us onto our next question, which your findings point to themes labelled as, ‘sometimes it’s tough’ and ‘it cuts both ways’. What do the adolescents actually mean by those? Vicki Zeigler: Those particular themes had to do with the advantages and disadvantages of having the ICD. ‘Sometimes it’s tough’, concerned the fact that, it’s scary when you get a shock; it hurts when you get a shock; the surgery is painful, because an incision is made. There were descriptions of feeling down, low, or depressed. Several of the adolescents felt they went through a period of depression right after the device was implanted, due to probably physical limitations, and also the other limitations that were placed on them, with respect to activity restrictions, and the subtheme there was feeling left out, which indicated some social isolation, they weren’t able to participate in activities that the other kids at their schools were participating in. And some of them experienced harassment, which was bullying—they were chastised because they had a device that others didn’t really understand, and they experienced a form of bullying. ‘It cuts both ways’, was the opposite, it actually provided some benefits, it provided a sympathy card that got them out of doing things that they really didn’t want to do. It’s very hot here in Texas, and, they have to practice to be in the band, so having the ICD was a convenient excuse for them to not have to do that. The other thing, it made it easier for them to say no to peer pressure, because they had the device, they could say: No, I have this heart problem, I can’t smoke cigarettes, I can’t drink alcohol, I can’t, you know, do other illicit, illegal drugs. They also felt that they were secure, that they had it and it would protect them from dying. They also felt supported by their friends and their families. And, because the device couldn’t be overtly seen, such as devices that children have, such as a prosthetic leg, it felt like, that, because you couldn’t see, that it was kind of an advantage because it was covered up by clothing. Hamish Holewa: And the last category of your findings refer to the ‘unique joule’ and ‘living life regular’. Do you want to just provide an overview of those findings? Vicki Zeigler: The ‘unique joule’—it’s a play on words, actually, it’s a measurement used to deliver the energy. They were kind of like a unique gem, or jewel, because very few children and adolescents have ICDs: less than one per cent of the total ICD population are children. So, they felt like they were the only one and most of them didn’t know anyone, their age, who had an ICD. They was also a spiritual aspect to that, in that they felt like they were here for a reason, that they were here to help other people who were having difficulties in their life, not just a device or surgery, but any kind of other difficulties. They felt like that they were here to be able to help those people. They also had an extreme appreciation for life, not seen in other kids who have chronic health problems; particularly in those who’d had a sudden cardiac death episode, and those who had had a loss of consciousness, they really were appreciative of being alive. Hamish Holewa: Right. Vicki Zeigler: The ‘living life regular’, had to do with how they were managing their lives and what they were doing to, kind of, move on and maintain some sense of normalcy in their lives. They knew that they were supposed to do what the doctor said. They also try and look at positive aspects of their lives, to try and deal with the things that they’re dealing with. They also understand that they have boundaries and when they get to the point where they feel like they’re going to have an episode that they cause them to get shocked, they will stop. And lastly, they pretty much figured that they were going to have to have these things for the rest of their lives, and that it was just something that was necessary, and something that they had to do, forever and ever—every four to six years they have to have the device replaced. Hamish Holewa: Sure—and what are the practical implications of your study? Vicki Zeigler: Well—I think the practical implications are that nurses can have a significant impact on the lives of these adolescents. We should look at them as seeing an adolescent first, and then look at them with having an ICD. Some of the other things that we need to do, practically, is to try and introduce them to other kids their age that have ICDs, and to look for depression early on, in the course of treatment, in order to determine those who need other venues of psycho-social support, and help them to identify their strength and find alternatives to things that they can do, as a result of the restrictions from the device. Hamish Holewa: Yes, and a very good message there, it’s spreads across multiple disciplines and diagnostic groups. Well Vicki, thank you very much today for speaking with us on IPP-SHR podcasts. Vicki Zeigler: Thank you very much.