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Experiences of Young Adults With Pacemakers and/or Implantable Cardioverter Defibrillators

Larimer, Karen PhD, ACNP-BC, FAHA; Durmus, Julie MSN, RN; Florez, Elizabeth PhD, RN

The Journal of Cardiovascular Nursing: November/December 2016 - Volume 31 - Issue 6 - p 517–522
doi: 10.1097/JCN.0000000000000280
ARTICLES: Acute Care
Free

Background: The number of implanted devices (pacemakers [PMs] and implantable cardioverter defibrillators [ICDs]) is increasing. Because of technological advances, these devices are used in greater numbers in children and adolescents. Challenges of having these devices have been well studied in adults, but little is known about the lived experiences from the perspective of young adults.

Objective: This study explored the lived experiences, coping behaviors, and challenges of young adults who had cardiac devices implanted during childhood.

Methods: A descriptive qualitative study design was used. Purposive sampling was used to identify young adults aged 18 to 29 years, living with a PM and/or ICD. Participants were interviewed about their experiences and challenges related to living with a PM or ICD, with common themes identified and analyzed.

Results: A total of 6 participants were interviewed for this study. The challenges of living with a PM and/or ICD included insecurity about physical appearance, device compliance, physical sensations of the device, future uncertainty, and limited support. The identified coping behaviors utilized by the participants were confrontation, acceptance, educating others, spreading awareness, avoidance, and humor. The overall lived experiences described were appreciation for device benefits, fear of device malfunction, and attracting attention.

Conclusions: The lived experiences of young recipients often mirror that of older adults; however, it is clear that there are challenges and coping behaviors unique to young adults living with a PM and/or ICD. It is important to educate healthcare providers about the unique challenges that young adults may face so they can provide the appropriate support to this population.

Karen Larimer, PhD, ACNP-BC, FAHA Assistant Professor, School of Nursing, DePaul University, Chicago, Illinois.

Julie Durmus, MSN, RN Graduate Student, School of Nursing, DePaul University, Chicago, Illinois.

Elizabeth Florez, PhD, RN Assistant Professor, School of Nursing, DePaul University, Chicago, Illinois.

K.L. receives consulting compensation from Endotronix. The other authors have no conflicts of interest to disclose.

Correspondence Karen Larimer, PhD, ACNP-BC, School of Nursing, DePaul University, 990 W Fullerton Ave, Ste 3000, Chicago, IL 60614 (klarimer@depaul.edu).

Biotechnological advances supported by a better understanding of cardiac electrophysiology have extended and improved quality of life in patients with potential and/or diagnosed electrophysiologic aberrancies. While the vast majority of devices such as pacemakers (PMs) or implantable cardioverter defibrillators (ICDs) are implanted in a population older than 60 years, young adults and children also receive these devices (0.13%).1–4 These devices have become smaller, with longer battery lives and improved programming, and treat more conditions.5 Although PM and/or ICD (PM/ICD) implantation provides lifesaving benefits, young device recipients (YDRs) face distinct circumstances related to the early age at implantation, and this study aimed to better understand both challenges and coping strategies in this population.

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Background

While the impact on quality of life and challenges encountered in the adult population with PM/ICDs are relatively well understood, much less is known about how YDRs cope with the psychological and physical challenges of having a device. Mostly, quantitative approaches have been used to explore the YDR’s “quality of life” and “psychological impact” and all included subjects with ICDs. Two studies included subjects with PMs. The unit of analysis was often the parent and YDR as a dyad. At least 10 different instruments were used to measure quality of life in YDRs,6–11 and findings consistently reflected decreased quality of life and increased anxiety, yet no significant increase of depression occurred, compared with those without a device.6,11

Few qualitative studies have been conducted. Zeigler and Nelms12 and McDonough13 explored YDRs’ perspectives and found similar themes reflecting psychological and physical challenges. In McDonough’s study,13 YDRs described financial and developmental challenges (ie, having children), presumably because the study’s cohort was an older population than Zeigler and Nelms’s12 adolescent population. Zeigler and Nelms12 and McDonough13 both concluded that coping strategies such as normalization, resilience, and acceptance are used. Data for young adults aged 18 to 40 years also support coping strategies such as avoidance and preparation.13 While early work demonstrates clear challenges for YDRs with some data on coping strategies, research is lacking on the lived experience of YDRs with PM/ICDs, specifically exploring how they cope.

We believe that YDRs face unique challenges and emotional responses in addition to everyday stresses and demands of childhood, adolescence, and/or young adulthood without chronic illness. Unlike the challenges, coping behaviors utilized and overall lived experience of having a PM/ICD are poorly understood. To better meet the needs of the whole person, we explored the lived experiences of young adults, aged 18 to 29 years, with a PM/ICD (YA-PM/ICD), unique challenges they face, and coping strategies they use. This study expands on existing research from the retrospective view of young adults, using the Stress-Coping Model (SCM)14 as a framework to explore the lived experience, challenges, and coping strategies of YA-PM/ICD. Demographics, disease characteristics, and life events affect coping of an individual with a chronic disease15; in our context, “disease” stood for “living with a PM/ICD.” Assessment of disease demands and personal goals enables development of an emotional cognitive response. Subsequently, the individual can utilize external and internal resources to develop a coping behavior, which leads to psychological, social, and physical consequences (Maes et al, 1996).

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Methods

Design

A descriptive qualitative research design was used, with 1 point of data collection. Purposive sampling was used to identify YA-PM/ICD.

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Setting and Participants

We recruited participants via (1) convenience sampling at a Midwestern cardiology practice and (2) snowball sampling from recruited participants. Inclusion criteria were participants aged 18 to 29 years, having a PM/ICD for at least 1 year, and able to speak and read English. All participants lived in the United States. The final sample size was 6 participants.

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Procedure

The institutional review board at DePaul University approved this study. The primary investigator recruited participants by using a verbal script, and verified by self-report, that they met the study criteria. The primary investigator interviewed participants in person or by phone at their convenience. Those interviewed in person received consent forms immediately prior to the interview, were given time to review/ask questions, and signed consent forms. Those interviewed by phone were e-mailed consent forms prior to the interview, given time to review/ask questions, and consented verbally.

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Data Collection

In-person interviews were audio recorded; phone interviews were transcribed while interviewing. Two data gathering instruments were deployed: (1) a demographic questionnaire on age, sex, length of time he/she has had a PM/ICD, and other socioeconomic variables; and (2) a semistructured interview, with 6 SCM-based guide questions, which fell into 3 domains:

  • a Lived experience: Participants were asked about a time when they felt embarrassed about having a PM/ICD, when they felt conscious of having the device, and when they felt that the device drew attention from friends or peers.
  • b Challenges: Participants were asked about a time when the PM/ICD limited or improved their ability to do an activity in addition to any other challenges or concerns about their PM/ICD.
  • c Coping behavior: Follow-up probes invited participants to describe any coping behaviors they used.

Two experts in cardiology and electrophysiology established face and content validity of the questions, which were also used during a pilot interview to ensure clarity.

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Data Analysis

A data-driven approach with open coding was used to describe the common experiences of YA-PM/ICD. Each transcript was read in its entirety to gain an understanding of the participant’s experiences and examined line-by-line to categorize the thematic content via coding. A codebook was developed for codes and definitions. Researchers then coded the transcripts separately and then compared and discussed any discrepancies in coding until 100% intercoder reliability agreement was achieved and compared the coded transcripts for similarities/differences to identify thematic results.

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Trustworthiness

Several strategies ensured data trustworthiness. Having a second coder and calculating intercoder reliability supported data coding decisions. Researchers collaborated to identify the common themes. Direct quotations from transcripts were identified to support generated themes.

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Results

Three women and 3 men, all non-Hispanic white, participated in this study and were aged from 18 to 28 years old (mean, 23.7 years). Reasons for implantation were primary prevention: prolonged QT syndrome, congenital heart defect, Brugada syndrome, third-degree heart block, and postural orthostatic tachycardia syndrome. The length of time having the device ranged from 1 year, 3 months to 24 years. Three participants had battery and/or device changes or lead replacements. All participants had PMs, and 3 had PM/ICDs. The age at device implantation ranged from 3 to 23 years of age. Four participants were married; 2 were single.

Common themes were identified through data analyses. Five themes for the challenges faced were insecurity about physical appearance, device compliance, physical sensations of the device, future uncertainty, and limited support. Five themes for coping behaviors were confrontation, acceptance, enlightening others, avoidance, and humor. Themes for global lived experience with PM/ICD were appreciation for device benefits, fear of malfunction, and attracting attention.

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Challenges

Insecurity about physical appearance. Participants felt embarrassed by the attention that implantation scars and device visibility cause among their family, friends, and peers. Being in a swimsuit, shirtless, or in a strapless dress caused feelings of insecurity and awkwardness due to the physical nature of the device and scarring:

At 16 years, I was much more self-conscious, especially while at the beach… I wondered if they’d think it was hideous or wonder about the bulge on my chest… I was very insecure about that.

Participants also discussed insecurity in personal relationships. Dating can be difficult as self-consciousness about scarring and body image can interfere with intimacy and closeness:

If someone leans against me and puts their head on my chest, it’s uncomfortable because my pacemaker presses against me, and it hurts… So I just become aware with physical interaction with people.

Device compliance. Participants described device compliance in terms of (a) activity restrictions and (b) avoidance due to the nature of the device itself. Being restricted from certain activities (competitive contact sports, skydiving, vigorous exercising, and movements that may cause lead displacement) was a challenge. Participants discussed the avoidance of magnets, security metal detectors, and other devices that may cause electromagnetic interference. They often found device compliance inconvenient, and it also reminded them of having the device:

I can’t walk through metal detectors… if I enter a different door with a different officer, I must remind them. At times they give me a hard time… but I find it somewhat harassing, because I didn’t choose to have a pacemaker.

Physical sensations. Physical sensations—burning, pain, and discomfort—are another common challenge encountered, as devices can cause discomfort to the surrounding muscles during activities and even at rest. These sensations keep participants mindful and aware of having a device:

I do have some pain, off and on, because of where it’s located… and it’s more uncomfortable than anything. Sometimes it shocks me, and it’s painful. Sometimes the scar itches, and you touch it and feel the hard pacemaker under your skin.

Future uncertainty. Many participants described uncertainty as a major challenge of living with PM/ICDs. Having the device implanted at a younger age entails many future surgeries and procedures necessary for device maintenance, causing fear, anxiety, and stress. Participants covered under their parents’ insurance wonder how the financial burden will affect them once they are on their own. They often fear device malfunction: misfiring or not firing when needed. Having children and the overall impact of the condition later in life were a concern:

I wonder how long my pacemaker will last before I have to get it changed out again. I wonder what will happen to me if something goes wrong and my pacemaker doesn’t work properly… I wonder a lot about what my future will be like.

I really stress about the future… about the money I’ll need to support myself and future surgeries… I worry about the financial burden.

Limited support. While many support groups seem available for children and older adults with PM/ICDs, participants expressed a lack of support specific to YA-PM/ICDs:

If I go to pediatric doctors… their waiting rooms have blocks and pink elephants. But in cardiopulmonary rehab, I’m the youngest by 60 years. It feels like I’m in a no man’s land, stuck in the middle.

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Coping Behaviors

Confrontation. Participants often used confrontation as a coping behavior, feeling that it was best to be forthcoming about their condition with their friends and families. They most often addressed the issue when others noticed scarring or device visibility. One participant disclosed her condition on social media before anyone asked:

I just straight up told everyone right away, identified myself with it and let it be known. That made it easier.

Acceptance. Many participants struggled when their cardiac devices were initially implanted, but eventually accepted their condition and the devices.

I embraced it, and so now everyone is as used to it as me.

I used to get frustrated and upset, but I realized it wasn’t helping me; it was only hindering me.

Educating others and spreading awareness. Participants encountered people who were ignorant or very intrigued and confused about this condition, and many, even some healthcare providers, were unaware of using devices in young people. One way participants learned to cope was by educating others and spreading awareness:

All the kids in the class wanted to know why I have something that only old men have and started asking me a ton of questions. I had to educate all the kids in my gym class. I told them about my condition and how it’s different from what my teacher’s father has.

I had to educate him (pediatrician) about my disease because he didn’t know… There is so much ignorance about young people with ICDs… I’m very aware now that not all doctors know about these kinds of issues, and what young people face when we choose to get these installed.

Avoidance. Participants used avoidance to cope with having a cardiac device and sometimes felt it was best to ignore the situation:

I became much more conscious about whom I would hang out with, which, in turn, made me much less social.

Now I don’t bring it up unless I absolutely have to.

Humor. Another coping behavior was humor, as demonstrated in these examples:

I was a lifeguard when I was 15, and I made up a story about being bit by a shark, which led to my scars. Everyone would laugh… but it was my way of coping by making a joke out of it.

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The Lived Experience

Device appreciation. Overall, participants greatly appreciated their cardiac devices and understood their lifesaving and symptom-reducing benefits. Participants felt reassured that if anything were to happen to their heart (ie, life-threatening dysrhythmias or cardiac arrest), the device could immediately treat it.

…it does give me reassurance that I’ll be fine if something happens. It’s nice having this knowledge in the back of my mind… I’m lucky enough to know I have it and get the ICD before anything happens.

Fear of malfunction. While valuing PM/ICD, participants also mentioned fear that was on their minds on a daily basis—mainly the fear of device malfunction.

I always have a lingering fear that it will go off erroneously… That moment is completely debilitating, and I fear it will happen while I’m driving or in a situation that it can harm others. It’s always in the back of my mind… the ICD misfiring still bothers me all the time.

Attracting attention. Living with a PM/ICD can impact more than just the person receiving it. Showing their scars for the first time brought increased attention from others, followed by questions about their condition and devices. Such questions required explanations that sometimes were difficult for participants to give. Participants noted that the increased attention and worry from their friends, family, and peers present a challenge, and participants often felt the need to reassure their loved ones.

My family and everyone worry, and I have to reassure them that it’s fine; it’s not a big deal. But everyone makes it a big deal because they care about me.

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Discussion

We identified challenges and coping strategies used by YA-PM/ICD that were consistent with existing literature, but also uncovered additional themes. Similarly to McDonough,13 challenges identified included body image concerns. In our study, many reported embarrassment and psychological discomfort from the increased attention due to device visibility and scarring. These concerns had a lasting impact: participants were apprehensive about situations where the device would be visible or felt. This focus on the aesthetic and its influence on relationships are consistent with Erikson’s stages of human development, as individuals deal with the conflict of intimacy versus isolation in early adulthood.16 Older participants in our study mentioned that these insecurities get better over time, but still recalled how difficult and embarrassing their teenage years were due to the physical characteristics of the implant.

Additional challenges, similar to McDonough’s,13 were expectations and limitations of physical activity, financial security, future uncertainty, and childbearing concerns. Unique to our study were fear of the device misfiring and concerns about device replacements, surgeries, and cost. Older adults receiving a device may need 1 or 2 replacements or battery changes, but YDRs will likely need many replacements requiring surgeries. Not only the procedures themselves but also the associated medical costs generated worry. Longevity of PMs and ICDs ranges from 7 to 10 years and from 4 to 13 years respectively. According to Martin Burke, DO, FACC, FACOI, FRCP, an expert in cardiac electrophysiology, typically PM leads have a mean longevity of 20 years, and ICD leads have 8-year longevity (personal e-mail communication, October 19, 2014).

The coping strategies used by participants to manage challenges included acceptance, which is similar to normalization in the studies of McDonough13 and Zeigler and Nelms.12 Acceptance, or normalization, is a coping strategy recognized by other researchers and was also reported by our participants. We believe that this strategy (acceptance) may precipitate other coping strategy behaviors we identified such as educating others, using humor, and confrontation.

Many participants said that they had difficulty coping with the life changes that followed device implantation, and all participants reported lack of support. Some participants also reported avoidance as a strategy; although there is no evidence of avoidance in other studies reviewed herein, it is likely that avoidance may be underrecognized. According to SCM, it is important to have external support resources to optimize coping behavior leading to positive psychosocial responses. This study identified a broad range of coping strategies; it was clear that not one technique was appropriate to address all challenges. However, educating others and spreading awareness and/or confronting the situation surfaced in most interviews. This finding was similar to the responses of McDonough’s13 young adult population, which is consistent with this developmental stage.

Overall, this study identified the challenges and coping behaviors shared by YA-PM/ICD. Participants feared device malfunction and disliked attracting attention, but also appreciated the device for lifesaving abilities and reduction of the symptoms: the device was well worth it. Increased attention and concern from others were a salient theme, reported by every participant, which is consistent with the social concerns that older adults experience.17

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Limitations

The findings are limited by the small sample, demographics, and retrospective recall of experiences. All participants were non-Hispanic white, spent their childhoods in the Midwest, and had a variety of etiologies for implantation. Because participants were recalling their experiences, faulty or inaccurate memories may affect data. Participants also did not review the transcribed interviews. We also did not explore deliberately, but left it open to participants to describe, experiences with device discharge.

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Conclusion

We have expanded earlier research with new findings specific to YDRs. Knowledge of their challenges, paired with a repertoire of effective coping mechanisms, can help YDRs transition through adolescence, not least by knowing that their experiences are shared by other young people. We hope that this knowledge will equip health professionals to better care for this group.

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Implications

  • Physical appearance and body image are important during adolescence, and it is clear that having a device alters self-image. It is important to explore the alteration in self-image for YDRs in order to provide adequate support for developing coping behaviors.
  • The effect of having a device implanted early in life and its effect on subsequent relationships across the life span has not been adequately explored. Studies should be conducted to learn more about interpersonal relationships and how they are affected by having an implanted device.
  • Healthcare providers may not recognize the unique challenges and lived experience of YDRs and should be trained on providing appropriate support for YDRs.
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What’s New and Important?

  • Physical appearance and body image are important during adolescent development, and it is clear that having a device alters self-image. It is important to explore the alteration in self-image for device recipients at this stage of development to provide adequate support to develop appropriate coping behavior throughout the entire life span.
  • When cardiac devices are implanted in children, there are unique challenges, coping behaviors, and life experiences that should be recognized and addressed by healthcare providers and the recipient’s support circle.
  • The effect of having a device implanted early in life and its effect on subsequent relationships across the life span has not been adequately explored. Studies should be conducted to learn more about interpersonal relationships and how they are affected by having an implanted device.
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REFERENCES

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17. Kamphuis HC, Verhoeven NW, Leeuw R, Derksen R, Hauer RN, Winnubst JA. ICD: a qualitative study of patient experience the first year after implantation. J Clin Nurs. 2004;13:1008–1016.
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    Keywords:

    adolescent; children; coping; implantable cardioverter defibrillator; pacemaker

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