Perceptions of an Implantable Cardioverter-Defibrillator: A Qualitative Study of Families with a History of Sudden, Life-Threatening Cardiac Events, and Recommendations to Improve Care

Linder, Jarrett; Hidayatallah, Nadia; Stolerman, Marina; McDonald, Thomas V.; Marion, Robert W.; Walsh, Christine A.; Dolan, Siobhan M.

doi:10.23861/ejbm20132929

Cited by 5 publications

(3 citation statements)

References 31 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Erskine et al (2013) described the advantages of an interdisciplinary approach for personalized medicine. Linder et al (2013) identified major concerns associated with ICD implantation. The entire data set is available from the corresponding author.…”

Section: A General Populationmentioning

confidence: 99%

Translating Advances in Cardiogenetics Into Effective Clinical Practice

et al. 2014

Self Cite

View full text Add to dashboard Cite

In this article we describe a qualitative research study in which we explored individuals’ subjective experiences of both genetic testing and cardiogenetic disorders. Using a grounded theory approach, we coded and analyzed interview and focus group transcripts from 50 participants. We found that just under half of the participants who received their diagnosis during the study reported difficulty understanding information about both the purpose of genetic testing and their cardiac disease. A high level of anxiety about genetic testing and cardiac symptoms exacerbated individuals’ cognitive confusion. Participants reported both positive and negative interactions with the medical community, depending on health care professionals’ knowledge of cardiogenetic disorders. Overall, participants expressed a range of attitudes—positive, negative, and ambivalent—toward genetic testing. We conclude with a discussion of the barriers to achieving effective clinical care for genetic conditions and offer suggestions for improving collaborative decision making between physicians and patients.

show abstract

Section: A General Populationmentioning

confidence: 99%

Translating Advances in Cardiogenetics Into Effective Clinical Practice

et al. 2014

Self Cite

View full text Add to dashboard Cite

show abstract

“…[ 6 ] Therefore, patients living with ICD experience a high rate of insomnia,[ 7 ] depression and anxiety,[ 8 ] and stress. [ 9 ] Furthermore, patients after ICD placement may show fear,[ 10 ] feelings of loneliness and lack of support,[ 11 ] self-restrictions on physical activity,[ 12 ]feeling of an involuntary job move,[ 13 ] worries about their future,[ 14 ] communication restrictions,[ 15 ] and the unpleasant feeling when the shock is discharged. [ 16 ] However, the occurrence of mood disorders is a risk factor for CVD, recurrence of cardiac events,[ 9 ] and non-adherence to treatment.…”

Section: Introductionmentioning

confidence: 99%

Adaptation status and related factors in patients living with implantable cardioverter defibrillators

Oshvandi

Razavi

Khatiban

et al. 2022

Journal of Family Medicine and Primary Care

View full text Add to dashboard Cite

Introduction: An implantable cardioverter-defibrillator (ICD) is the only approach to treat patients with life-threatening ventricular arrhythmias. Adaptation and acceptance of ICD play an important role in the optimal treatment of the patients. The aim of this study was to determine adaptation status and related factors in patients living with ICDs. Methods and Materials: In this descriptive–analytical study, 148 patients referred to Kowsar Hospital in Shiraz and Farshchian Hospital in Hamedan city between July 2020 and September 2021 were included in the study. Patients’ adjustment status was measured based on the mode of the Roy nursing model and using the Baecke physical activity questionnaire, Pittsburgh sleep quality, mini nutritional assessment (MNA) nutrition questionnaire, constipation scoring questionnaire, self-concept scale, and multidimensional scale of perceived social support (MSPSS). Results: Patients had low physical activity and poor sleep quality. Negative self-concept in relation to the disease and adherence to physicians’ recommendations was observed among patients. In addition, patients did not have optimal interpersonal communication. Multivariate regression findings showed that the number of years of device implantation and the number of shock discharges are effective factors in the incidence of insomnia and the negative self-concept of patients. Conclusion: Patients living with ICD did not adjust to the new conditions after placement of the device. Low level of physical activity and sleep disturbance and also negative self-concept about the disease and adherence to treatment was observed among the patients. Shock discharges and duration of the device implantation were associated with impaired self-concept and insomnia in the patients.

show abstract

“… Published reports that have analyzed different themes from this research team include: Barlevy et al , who addressed reproductive decision-making in the context of genetic predispositions to sudden cardiac death [18]; Cohen et al , who discussed special considerations for genetic testing with adolescents [19]; Erskine et al , who described the advantages of an interdisciplinary approach to personalized medicine [20]; Linder et al , who identified major concerns associated with an implantable cardioverter-defibrillator (ICD) [21]; and Erskine et al , who analyzed motivations to pursue genetic testing in individuals with a personal or family history of cardiac events or sudden cardiac death [22]. The entire data set is available from the corresponding author.…”

mentioning

confidence: 99%

Psychological Stress Associated with Cardiogenetic Conditions

et al. 2014

Self Cite

View full text Add to dashboard Cite

Aim Genetic testing now makes it possible to identify specific mutations that may lead to life-threatening cardiac arrhythmias. This article presents data from a qualitative research study that explored the subjective experiences of individuals and families with cardiogenetic conditions. We focus on describing patients’ experiences of psychological stresses associated with having a cardiogenetic condition, illustrating the importance of integrating psychological and medical care. This integration of care is particularly important as personalized genomic medicine continues to evolve and the implications of genetic testing have a profound effect on individuals and families. Methods The researchers interviewed 50 participants from 32 families. The research team used a systematic, grounded theory procedure to code and analyze interview and focus group transcripts, incorporating multiple coders at several stages of the data analysis process. Results Three major themes emerged: a bereavement trajectory associated with sudden death in the absence of prior symptoms; high anxiety about transmitting a genetic mutation; and resilience reflected in positive lifestyle changes and participation in support groups. Conclusion This article identifies patient perspectives on personalized genomic medicine in cardiogenetics that can improve clinical care, including: specialized bereavement counseling; improving education about cardiogenetic conditions for medical professionals; parent guidelines for discussing cardiogenetic conditions with their children; information about support groups; and the routine inclusion of clinical psychologists in interdisciplinary treatment teams. Given recent advances in technology and decreasing costs, whole-genome sequencing is likely to become common practice in the near future. Therefore, these recommendations are likely to be relevant for other genetic conditions, as well as the entire field of personalized genomic medicine.

show abstract

Perceptions of an Implantable Cardioverter-Defibrillator: A Qualitative Study of Families with a History of Sudden, Life-Threatening Cardiac Events, and Recommendations to Improve Care

Cited by 5 publications

References 31 publications

Translating Advances in Cardiogenetics Into Effective Clinical Practice

Translating Advances in Cardiogenetics Into Effective Clinical Practice

Adaptation status and related factors in patients living with implantable cardioverter defibrillators

Psychological Stress Associated with Cardiogenetic Conditions

Contact Info

Product

Resources

About