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Perceptions and experiences of patients living with implantable cardioverter defibrillators: a systematic review and meta-synthesis

Abstract

Background

Sudden cardiac deaths have become a growing major public health concern that affects the world. Despite the various etiologies, life-threatening cardiac arrhythmias attribute the main cause of sudden cardiac deaths. Therefore in certain groups of high-risk patients, the Implantable Cardioverter Defibrillator (ICD) has been recommended as either a secondary or primary prophylactic method of prevention.

Objective

To summarise the perceptions of ICD recipients and provide an overview of their experiences with regards to the quality of life, coping strategies, and learning needs.

Methods

A systematic search was conducted using CINAHL, MEDLINE, PsycINFO, Scopus, Cochrane Library, and Web of Science. Primary research articles published from January 2005 to January 2016 that met the inclusion criteria were selected and assessed for methodological quality.

Results

Thirty-nine articles consisting of 16 qualitative studies, 22 quantitative studies, and 1 mixed methods study were included for the meta-synthesis. Findings extracted from these studies were grouped into eight subthemes with ‘living the ICD experience: a constant process of redefining oneself’ emerging as an over-arching theme.

Conclusion

This review provides insight into the perspectives and experiences of ICD recipients. Current evidence highlights the need for healthcare professionals to improve future care standards and develop a patient-centric holistic program that meets the specific needs of ICD recipients. Moreover, future studies are required to address the research gaps identified and also explore the perceptions of patients living with ICD in the Asian context.

Background

Sudden cardiac arrest describes as an abrupt state where the heart ceases to pump and causes the vital organs to be deprived of oxygen supply [1]. With a grim survival rate of less than 1% globally [2], most of these cases eventually result in unanticipated sudden cardiac deaths, generally within an hour of acute symptoms onset in people who may or may not have been diagnosed of any underlying pre-existing fatal cardiac conditions [3]. In fact, sudden cardiac deaths have become a growing major public health concern that affects the world [2, 3]. Life-threatening cardiac arrhythmias attribute to the main cause of sudden cardiac deaths [3, 4]. It is estimated that ventricular tachyarrhythmias annually account for approximately 6 million of the sudden cardiac death cases worldwide [2].

The Implantable Cardioverter Defibrillator (ICD) is a device that is surgically-inserted into patients’ chest for: (1) the constant monitoring and pacing of the heart rhythm; (2) anti-tachycardia pacing (ATP) which involves delivering a series of low-energy impulses to revert ventricular arrhythmias; and (3) defibrillation where a strong electrical shock is delivered to restore the heartbeats again [5, 6]. The ICD has been recommended as either a secondary prevention for survivors of prior ventricular tachycardia, ventricular fibrillation, and sudden cardiac arrest episodes or as a prophylactic primary prevention for patients with pre-existing cardiac conditions [1].

Since ICD implantation is effective in lowering the mortality rates of sudden cardiac deaths and prolonging the lifespan of patients with life-threatening cardiac conditions [7], it comes to a situation where ICD recipients will have to live with the device and their underlying chronic cardiac conditions for the rest of their lives. This systematic review aims to summarise the perceptions of ICD recipients and provide an overview of their experiences with regards to the quality of life, coping mechanisms, and learning needs. The review also hopes to identify the gaps in existing literature and healthcare practices. These findings will assist healthcare professionals in improving future care standards as well as developing a patient-centric holistic program that meets the specific needs of ICD recipients, thus improving their quality of life.

Methods

Search strategy

A systematic search was conducted in CINAHL, MEDLINE, PsycINFO, Scopus, Cochrane Library and Web of Science. Search terms including ‘implantable cardioverter defibrillator’, ‘ICD’, ‘automatic implantable cardioverter defibrillator’, ‘AICD’, ‘implantable defibrillator’, ‘perception’, ‘perspective’, ‘meaning’, ‘belief’, ‘attitude’, ‘experience’, ‘quality of life’, ‘psychosocial’, ‘psychological’, ‘physical’, ‘sexual’, ‘spiritual’, ‘patient education’, ‘knowledge’, ‘coping strategies’, and ‘support’ were used in various combinations in the search process according to the Boolean instruction and truncation notation [8]. The inclusion criteria were: (1) primary research journal articles published from January 2005 to January 2016; (2) English language publications; and (3) research that focused on the perceptions and experiences of adults living with ICD. The articles were excluded if they were: (1) editorials, commentaries, conference abstracts, opinion pieces, or review papers; and (2) focused solely on ICD technicalities, healthcare professionals, caregivers, adolescents, or children.

Search outcomes and quality assessment

The initial search across all databases yielded 31,208 articles. After removing the duplicates, the remaining 17,980 articles were screened for relevance based on the titles and abstracts. Subsequently, 535 full-text articles were retrieved, and after exclusion based on the inclusion criteria, the remaining 46 full-text articles were appraised for its quality. The Joanna Briggs Institute critical appraisal checklists [9] were used depending on the research designs to assess the methodological quality of the articles for its final inclusion in this systematic review. For the purpose of conducting a high-quality meta-synthesis, the articles were critically appraised by two independent researchers (SLO and WW). Of the 46 articles, only 39 articles met at least 60% of the appraisal checklists’ criteria on both independent assessments and were included in this review. The included studies are summarised in Table 1, and Fig. 1 depicts the PRISMA flowchart documenting the search process.

Table 1 Summary of included studies
Fig. 1
figure1

PRISMA Flowchart

Data extraction and analysis

A data extraction form was used to extract information pertaining to the research aims, research designs, sampling methods, sample characteristics, outcome measures, data collection instruments, and key findings. For the extracted qualitative data, a meta-synthesis was used to integrate findings and offer a new interpretation across the reviewed articles. Findings from the quantitative studies were synthesised and presented in a narrative manner. A thematic analysis approach [10] was adopted for this systematic review. The studies were firstly read and familiarised before identifying for implicit and explicit codes across the text. Similar occurring codes captured in the study findings were then categorised.

Results

Characteristics of included studies

Among 39 studies included, there were 16 qualitative, 22 quantitative, and 1 mixed-methods. Purposive and convenience sampling were the most common methods, and only two studies used either quota or strategic theoretical sampling [11, 12]. With the exception of two Asian studies i.e. Japan and Hong Kong [13, 14], the majority of studies were conducted in the Western countries, more frequently in the United States [1525], Sweden [11, 12, 2629], Norway [3032], and Netherlands [3336].

All of the quantitative studies (n = 22) were of a descriptive correlational design, and the sample size ranged from 35 to 3067 participants, in which the largest study was conducted in collaboration with the Swedish ICD and Pacemaker Registry [29]. For qualitative studies, two studies adopted a grounded theory approach whereas the other 14 studies used phenomenological and descriptive designs. While most qualitative studies reported only themes relating to the perceptions of ICD recipients, there were two particular studies that also explored and compared the experiences of their partners or caregivers. By comparison, the mixed-method study consisted of both interpretive phenomenological and cross-sectional descriptive designs for a holistic understanding of the phantom shock experiences.

Meta- synthesis of study findings

Findings extracted from the studies were grouped into eight subthemes, with the synthesised finding of ‘living the ICD experience: a constant process of redefining oneself’ emerging as an over-arching theme (Table 2).

Table 2 Synthesised finding

Describing ICD shocks

The shock episodes experienced by participants can be classified into: (1) objective shocks, which refer to the actual shock therapies that were delivered and recorded by the ICD; and (2) phantom shocks, the phenomena where participants reported that sensations of shock were found to be unrecorded during ICD interrogations [37]. Comparing the participants’ accounts across several studies, both objective and phantom shock occurrences were found to be often abrupt and unexpected [23, 30, 37, 38]. This is because phantom shocks were predominantly encountered during sleep or sleep-wake transitions with rarer instances while awake [37]. By comparison, although some participants recalled experiencing physical symptoms of nausea, warmth, dizziness, and altered heart rhythm preceding objective shocks [20, 38], the majority were unable to foresee the impending shocks [38].

Consistent across several qualitative studies, participants used terms of high intensity to describe their physical and sensory experiences with objective shocks. Common terms consisting of ‘explosion’, ‘blow’, ‘bomb’, ‘shot by gun’ [20, 23, 30], or terms with close associations like ‘thunder’ [23], ‘lightning’ [30, 38], and even phrases of similar meanings like ‘electric shock’ [38] and ‘sticking your finger in the light socket’ [23] illustrated the suddenness, striking, and high impact nature of objective shocks. Partners in close body contact with the participants also reported feeling a sudden repulsive force of being ‘kicked’ or ‘thrown’ which corroborated with the participants’ account of experiencing objective shocks [23]. Accompanying these shocks, seeing light flashes [23, 38] were more commonly reported compared to hearing popping noises [23]. Participants with experiences of both objective and phantom shocks had described their intensity and characteristics to be vividly similar and indistinguishable [37]. However, upon closer examination, it was observed that the participants tend to use terms of comparatively lower intensity like ‘punch’ and ‘kick’ in their reference to phantom shocks [37].

Nevertheless, objective and phantom shocks were similar in that both physical sensations were felt mostly in the chest [23, 37, 38] and pain was also recounted in the aftermath [23, 37, 38]. Specifically in objective shocks, pain experiences varied widely. With the majority reporting mild discomfort [20] to those experiencing multiple shocks having greater pain [38] and females describing more intense pain reaction than males [20]. In several studies, it was found that females tend to have greater anxiety than males [35, 39, 40] and anxiety could have potentially exaggerated their pain experience as explained by the nocebo hyperalgesia phenomenon [41]. Post-shock symptoms like nausea and dizziness were also reported in objective shocks [15, 20].

Experiencing uncertainty and psychological distress

In the initial post-ICD implantation period, participants experienced feelings of anxiety, fear, depression, helplessness, anger, insecurity, and uncertainty [14, 17, 18, 20, 23, 30, 38, 4244]. These negative emotions described in the qualitative interviews concurred with quantitative findings on poorer psychological well-being in the early phase [24, 28, 36, 45]. Among them, fear and anxiety were the most prevalent emotions following post-discharge [20].

The majority were anxious over the unpredictability and occurrence of shocks as well as the potential loss of independence with ICD [14, 18, 20, 30, 38, 42]. There were four quantitative studies that explored different anxiety levels between genders. Despite the differences in geographical locations and anxiety instruments, three studies reported higher anxiety levels in females than males [35, 39, 40]. Versteeg et al. [40] first established that somatosensory amplification could have mediated the association between gender and anxiety in ICD recipients. This may explain the findings since females were found to have a significantly higher somatosensory amplification than males [40]. However, Habibovic et al. [33] reported insignificant differences in anxiety levels between females and males due to the mediation effect of Type D personality.

The participants were also fearful of fatal arrhythmic deaths, shock encounters in public due to embarrassment and uncertainty of available support [14, 17, 20, 26, 44], exposure to electromagnetic interference [14, 17, 20, 23, 38], ‘cellular phone phobia’ [38, 44], ICD recalls [20], as well as driving restrictions if arrhythmias or shocks were detected [12]. There was also apprehension over resuming sexual activity as the majority feared of shocks hurting their partners [18, 20, 23, 43]. Few studies reported on the sexual concerns associated with ICD, possibly because the participants were uncomfortable in bringing up such sensitive topics with the researchers. Moreover, some became depressed over the unpredictability of their cardiac arrhythmias [30, 44] while others felt helpless over the loss of control in their lives [20, 30, 38]. Anger with one’s limitations and resentment towards ICD [15, 20, 38] were also observed. Many still harboured insecurities over the device failing or battery depleting [20, 38, 44] as well as the uncertainties that accompany arrhythmias [14] or awaiting ICD discharges [43].

Consistent across both qualitative and quantitative findings, participants with objective shocks reported more psychological distress and ICD concerns than their non-shock counterparts [16, 20, 38, 46]. Besides being reminded of their deteriorating cardiac conditions [43], participants with shock encounters ruminate of recurrences [14]. Nevertheless, they were relieved that the device functioned and had no qualms over its necessity [18, 30]. In contrast, participants without shock encounters ruminate possible future shocks [14, 17, 18, 20, 42] and at times, they continued to doubt the device [14, 18, 26]. Similar to non-shock participants, those with phantom shocks also became less trusting of the ICD as they were alarmed and confused over their reactions to future shocks [37].

Impacting self-identity, self-image and self-perception

ICD implantation influenced one’s body image perception [17, 20, 38]. Starrenburg et al. [35] found that females were associated with poorer device-related acceptance than males due to body image concerns. This is congruent with females’ qualitative accounts of embarrassment associated with wearing clothes that reveal their scarring [20, 26]. This may be due to greater societal expectation and emphasis on beauty in women compared to men. Moreover, according to Vazquez et al. [25], younger women tend to experience more image concerns than middle-aged and older women. Moreover, participants were conscious of the physical protrusion, arm movements, and lying down due to the awareness of the ICD in their chest [17, 42]. Some participants, however, were dissatisfied with having foreign objects inserted as it made them feel being kept alive by machines [14].

Driving restrictions also resulted in poor self-identity and self-perception where participants reported feeling ‘handicapped’, uselessness, loss of dignity, and low self-respect [12]. They viewed losing their driving license has depleted their overall well-being [30] as it is associated with the loss of independence, increasing reliance on others, and being limited in mobility and social life [12]. Nevertheless, the majority who drove before their ICD implantation had resumed driving after the restricted period [38]. Furthermore, if their license were revoked, it could have dire consequences on their employment and financial security [12, 18, 20, 30, 42].

Needing support and maintaining relationships

Participants with adequate support, help, and empathy from their family and social networks had better recovery and adjustments [12, 15, 20, 30, 38, 43, 47]. During the period of driving restrictions, they were transported around [30] and prevented from engaging in certain activities that were deemed risky [38]. However, not everyone was comfortable to receive help [12]. Concerns were raised regarding overprotection [15, 23, 26, 38, 43] as it made them feel dependent or being a burden [15, 18]. While some had attempted to stop their family from constantly checking on them [47], others tolerated this positively [43, 47]. By comparison, most participants felt isolated as they had lost the most important person around the time of their diagnosis and were resistant to establish new connections for fear of loss [18]. Ironically, they also emphasised the importance of independence and self-reliance to preserve self-respect [18].

Participants who feared being alone or were reluctant to go out unaccompanied [30, 38, 44] experienced reduced social activity and became dependent [38]. Being protective could also strengthen couples’ relationships [47]. Most of them became appreciative of their partners who were their pillars of support [43] and listeners in times of need [30]. However, there were also instances where reductions in sexual intimacy caused couples to become more emotionally distant [42, 43].

There was a general lack of professional support from the healthcare team [26, 30]. Nurses were viewed as knowledge experts rather than listeners or patient advocates [18]. The lack of continuity in clinical care during follow-ups reduced patients’ confidence [30] to receive support. Moreover, time constraint during follow-ups contributes to unmet emotional needs [30]. Participants also recalled encountering staff who were indifferent or uncomfortable with discussing sexual concerns [23]. Some participants accepted the uncertainty because they did not wish to bother or were unable to contact their healthcare professionals [26]. Several studies found that non-constructive support provided by healthcare professionals often led to more insecurity, psychological distress, and reduced device acceptance [3032]. Nevertheless, there were also participants who reported receiving positive support from their healthcare team [15, 26, 30]. Such experiences varied between individuals due to potential subjectivity in how participants perceived the support based on their personal encounters.

In some studies, participants favoured joining and learning from support groups comprising of members with similar demographics and ICD experiences [14, 15, 44]. Specifically pertaining to sexual concerns, some had preferred to discuss with a support group member who is knowledgeable and experienced [23]. However, there were also others who, despite wanting to connect with ICD recipients, did not favour joining support groups [18] due to inconvenience, lack of anonymity, and on negative vibes [15, 18]. Online support chat rooms could be an alternative for these participants [15, 20].

Identifying learning needs

Due to the short-term inpatient stay, limited information was obtained from healthcare professionals [15, 38]. Moreover, participants were less receptive to the patient education provided in the stressful pre-ICD implantation period [12]. Although they were given resources for information [15], some still had queries [18] and were dissatisfied with the adequacy of the information provided [15, 26, 30, 38], particularly on driving restrictions and sexual concerns [12, 23]. This could potentially be due to the lack of individualised advice and information reinforcements [15, 23]. Some studies had also highlighted the lack of consistency in the information given by various healthcare professionals [12, 38]. A qualitative study by Svanholm et al. [48] revealed that some of the octogenarians were unsure if they had suffered shocks throughout their lives because of misunderstandings on shocks. Evidently, incomplete patient education could result in participants’ misinterpretations on their conditions.

A review of the articles identified 18 distinct learning needs which could be categorised into 4 main areas. These include: (1) general information on ICD where patient education on the functions, shocks, impacts, battery lifespan, and follow-ups pertaining to ICD should be given [14, 15, 23, 30, 38]; (2) diagnosis consisting of information on cardiac conditions, medications, and side effects of sudden cardiac deaths [14, 15, 18]; (3) living with ICD covers post-discharge advice on concerns like driving restrictions, resuming sexual activities, overcoming inconveniences, using electrical appliances and phones, appropriate physical activities, and swimming [12, 15, 18, 23, 38]; and (4) advanced planning for ICD deactivation [18].

Developing coping strategies

A cross-sectional study conducted in Sweden found that ICD recipients seldom use coping strategies and, among those used, optimism was most frequently used and highly effective [26]. Sometimes participants might have used coping mechanisms unknowingly as it occurred to them as their usual way of managing their everyday life and it had become a norm. Thus, it might not have occurred to them that these were actually also ways of coping with life after ICD implantation. Furthermore, at the moment where this study was conducted, most participants were already into their 6 to 24 months’ post-implantation and might have already adapted to the device. Thus, they would report requiring less coping strategies. A future recommendation would be to explore the coping strategies used by the participants when faced with everyday crisis prior to the implantation and compare against post-implantation findings at several time intervals to find out the changes in coping strategies as well as isolating those that are specifically used for managing ICD issues.

Most qualitative studies did not explicitly state the participants’ coping strategies and thus inference was made from their account. Several coping strategies were implicitly communicated with information belonging to subthemes like psychosocial distress or life adjustments and had to be extracted out. This review identified 12 main coping strategies which include: (1) optimistic interpretation of life situations [20, 26, 44, 47]; (2) talking about it and educating others [20]; (3) developing a strong willpower to live on [26, 44, 47]; (4) understanding own diagnosis to reduce uncertainty [14]; (5) re-evaluating outlook of life and prioritising goals [15, 20, 26, 43, 47]; (6) searching for meanings and rationalising situations [14, 37]; (7) religion and fatalism [15, 38, 43, 47]; (8) acceptance which could refer to either grateful acceptance or resigned acceptance [42]; (9) concealment of fears [42]; (10) distracting oneself with other activities and suppressing thoughts regarding diagnosis [26]; (11) evasiveness and avoidance [4244, 47]; and lastly, (12) resignation [42, 43]. The first nine coping strategies could be considered as either neutral or adaptive while the remaining three tend to be more maladaptive. Nevertheless, such determination is subjective and dependent on one’s perception. Despite the variety of coping strategies identified, there was little information provided on its frequency and efficacy.

Making adjustments and gaining acceptance

Adaptations to limitations in life after ICD involves stages. In the initial period, it was about managing post-operative pain and negative emotions [15]. Most pain was experienced in the post-surgical stage and reduced thereafter [17]. Besides the surgical wound, pain was also experienced in the arm adjacent to the device due to restricted movements [42]. For the majority, such negative emotions usually dissipate after several weeks to months [20] as one learns to cope and eventually accept. Similarly, a longitudinal study by Carroll & Hamilton [45] reported improvement in the mental health score on the Medical Outcomes Study Short Form-36 (SF-36) and reduced psychological distress score on the Profile of Mood States (POMS) by 6 months’ post-implantation. Another longitudinal study by Verkerk et al. [36] also found that the mental health score on SF-36 was reduced at pre-implantation and 2 months but improved over time to be comparable with the population norm at 6 and 12 months. However, those with complications or shocks would require a longer adjustment time to build up their confidence [44].

Three qualitative findings had reported a reduction in physical functioning and activities in the initial period due to body weakness, discomfort, and reduced energy [20, 30]. These findings were consistent with the quantitative study by Verkerk et al. [36] which also reported a reduction in physical functioning score on Short Form-36 (SF-36) health survey at 2 and 6 months but improved over time to be on par with the general population at 12 months. On the contrary, Conelius [17] reported that participants actually experienced more energy and better physical functioning post-implantation. A possible explanation implied from Conelius [17] was that these participants trusted the device to protect them and were therefore more daring to engage in physical activities compared to the pre-implantation stage where they could have been more ill. However, no information was provided regarding the severity of their cardiac diagnosis and baseline physical functioning level for comparison with other studies.

Generally, participants attempted to resume their normal routine [15, 17, 20, 22, 23, 26, 44] and made adjustments to better control their lives. Some did so by placing personal restrictions and engaging in careful planning to balance activities with what was appropriate for their health [26]. Others began changing maladaptive habits to embrace a healthier lifestyle, reducing working hours to optimize life, and also avoiding activities that trigger shocks [14, 20, 26, 38]. Instead of adhering to restrictions, some participants assessed their capabilities and risks as they successively tested their limits to increase physical level [14, 26, 44].

While older adults were concerned with self-care and functioning independently [47], younger adults were more concerned with developmental transitional tasks like family planning and childbearing [20]. Some were concerned about the heredity of the cardiac conditions and decided against childbearing while those with existing children that might require ICD in future had started preparing them for it [20]. Moreover, the participants approached sexual activities more carefully by altering patterns of sexual frequency and duration [23, 43].

Planning for the end

A study conducted by Pedersen et al. [34] on 294 participants found that 68% of them were aware of the option for ICD deactivation or battery replacement refusal during the end-of-life whereas a smaller-scaled study on 54 participants by Raphael et al. [49] yielded only 38%. This difference could had been partially subjected to personal variations in the patient education provided by healthcare professionals. Moreover, the timing of discussing such issues also varied according to the practices of the settings where the studies were conducted as well as the patients’ conditions, ICD implantation stage, and their readiness for enhanced information. Nevertheless, the poor understanding or the lack of knowledge in ICD deactivation in both studies revealed a lack of awareness regarding end-of-life planning. Similarly, qualitative findings also reported that most of the participants interviewed expressed unawareness of the option for ICD deactivation and that some even had the misconception of equating deactivation to euthanasia [11, 48]. Furthermore, another study conducted by Stromberg et al. [29] on 3067 participants reported that only 3% had full scores on the Experiences, Attitudes, and Knowledge of End-of-Life Issues in ICD (EOL-ICD), with 29% in the 25th percentile. Notably, these findings showed that more information regarding advance planning should be given.

Insufficient knowledge on end-of-life issues often cause greater indecisiveness or making decisions that might not attain a high quality of the end-of-life years [11, 29]. Some participants had either requested for more information or expressed the willingness to be involved in such discussions with their physicians [11, 49, 50] and most had preferred to know of the options prior to their implantation [34, 49]. According to the findings in a study, the participants’ favourable attitudes towards ICD deactivation was independently associated with the avoidance of shocks during dying as they wished for a worthy and natural death [34].

Discussion

This systematic review examined recent literature regarding the perceptions and experiences of patients living with ICD. The analysis of both quantitative and qualitative findings provided a deeper and richer insight into their quality of life, coping strategies adopted, as well as learning needs. However, caution should be exercised when interpreting these results due to the methodological limitations identified in most of the reviewed articles.

Firstly, some of the experiences recounted by the participants might inevitably be influenced by their underlying cardiac conditions, co-morbidities, and life stressors which also make up their life situations. As such, it would be difficult for participants to dissociate from other inter-related factors in their lives and share on experiences solely relating to ICD. In particular, the participants’ psychological and emotional states, as well as life adjustments, could have been partly influenced by their newly-diagnosed cardiac conditions or life-threatening encounters that warrant the ICD implantation. Secondly, it was not clearly-stated in most studies whether the participants’ ICD shock history were obtained from the medical records by researchers or participants’ self-reports. Thus, this posed a challenge in determining if the shocks described during the qualitative interviews were phantom or truly objective experiences. Despite the lack of objective measurement, phantom shocks were described with such strong conviction that they possessed a similar physical reality as objective shocks. Just as phantom limb sensations were experienced by amputees, phantom shocks experienced by ICD recipients should not be disregarded. Moreover, researchers conducting future qualitative research on objective or phantom shocks should be blinded on the participants’ shock experience so as to reduce the researchers’ influence on the participants’ account.

Ever since Kowey et al. [51] reported on the first incidence of phantom shock experience in 1992, there are still no studies in the present that has come up with a scientific account for phantom shocks. Bilanovic et al. [37] proposed a possible explanation that the participants might have perceived sub-threshold cardiac arrhythmias which fell short of being detected by the ICD as a shock therapy. This corroborated with the findings presented in another study by Kraaier et al. [52] where phantom shocks in the primary prevention group were related to a history of atrial fibrillation and potentially patients might have misinterpreted the symptoms of arrhythmia for phantom shocks. Likewise, the experiences and needs of ICD recipients with phantom shocks were also underexplored as evident by the fact that only one study published within the last 10 years was located during the systematic search. Although they belonged to a smaller subset of the ICD population, patients with phantom shocks would present different perceptions and needs. In this review, the comparison of experiences with phantom and objective shocks were limited due to the lack of published studies on phantom shocks. As such, future studies could look into exploring the perceptions of ICD recipients with phantom shock encounters. In addition, objective shocks could either be appropriate or inappropriate shock therapies delivered and since the MADIT-RIT study findings in 2012, changes to the ICD programming had reduced occurrences of inappropriate shock therapies [53]. Nevertheless, the differences in experiences among patients with appropriate and inappropriate shocks could be a potential area of future research interest. While the experiences of ICD recipients had been relatively well-explored in both quantitative and qualitative studies, and the majority of them were conducted in Western contexts. Only two of the studies were conducted in Asian settings [13, 14]. This revealed a lack of studies being conducted in Asian settings pertaining to this area where the cultural contexts can influence patients’ experiences, coping, and needs differently despite having the same implantation. It is only by examining such differences that healthcare professionals can provide more relevant and culturally-sensitive care.

In addition, there is a greater number of studies focusing on the physical, psychosocial, and emotional impacts as compared to the other domains like spiritual, socioeconomic, sexual, self-identity, and childbearing concerns. As these domains tend to involve more sensitive and close-to-the-heart issues, most participants would not freely talk about them unless raised by the researchers. Even so, some participants might be uncomfortable sharing such information with someone they had not established any rapport with. This would be a challenge especially for qualitative studies taking on a phenomenological design where a grand tour question is being posed at the beginning and the participants control the direction of the conversation till they have nothing more to say. Furthermore, there were fewer studies examining the experiences related to more specific issues like ICD recalls, end-of-life ICD deactivation, battery replacement refusal, or phantom shocks. ICD recalls refers to cases of device malfunction that would require closer monitoring rather than explanation [54]. Although these instances are rare, such experiences could be distressful and more studies are warranted in this area as well. In the recent years, there are more studies conducted to explore the experiences of patients under telemonitoring or remote home monitoring which would had implications for future practices.

Conclusion

Although a careful systematic literature search was conducted, the search strategy may not have included all the relevant published literature. In addition, the differences in psychological impacts between appropriate and inappropriate ICD shocks may provide an interesting perspective. However, this is not included in this review as most of the articles included for this review did not differentiate between appropriate and inappropriate ICD shocks.

Nevertheless, this review indicates that ICD recipients experienced the transition from stages of uncertainty in the initial phase, to the adjustment phase, where they started to adapt and make life modifications, and finally attaining acceptance of self and trust in the ICD. It is a constant process of self-reflection, reorientation of their life perspectives, making sense of these changes, and moving on with life. Current evidence highlights the need to explore the perceptions and experiences of patients living with ICD in Asian settings.

As evident from the findings of this review, healthcare professionals tend to over-emphasise the scientific and clinical aspects rather than their patients’ actual concerns such that the lack of constructive professional support was found to inflict greater psychological distress among ICD recipients. Unlike trained healthcare professionals, most patients, being laypersons, would not be able to understand the significance of clinical results and are therefore more concerned with their quality of life and normal functioning post-implantation. This misalignment in priorities could have attributed to the dissatisfaction among ICD recipients. In order to provide good targeted care for these patients, it is pertinent for healthcare professionals to acknowledge that patients are partners in care and they have the rights to partake in the management of their own health. By listening to their patients’ concerns and daily lives, healthcare professionals could obtain a better understanding of their coping and establish therapeutic alliance to assist patients in further improving their quality of life.

Abbreviations

ICD:

Implantable cardioverter defibrillator

OS:

Objective shock

PS:

Phantom shock

PTSD:

Post-traumatic stress disorder

QOL:

Quality of life

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Acknowledgements

The authors would like to acknowledge the Ministry of Education, Academic Research Fund - Tier 1 for the support to conduct this study, and would also like to extend their appreciation and acknowledgements to the study team members for their time and effort spend in this study.

Funding

The study was funded by the Ministry of Education, Academic Research Fund - Tier 1, Singapore (Award number: T1-2013 APR -05).

Availability of data and materials

The datasets used for this review are available from the corresponding author.

Authors’ contributions

OSL conducted the literature search, analysed the data analysis, and drafted the manuscript. HGH analysed the data and critically reviewed and revised the manuscript. YD critically reviewed and revised the manuscript. WW designed the study, analysed the data, and drafted the manuscript. All authors read and approved the final manuscript as submitted.

Competing interests

The authors declare that they have no competing interests.

Consent for publication

Not applicable.

Ethics approval and consent to participate

Not applicable.

Author information

Correspondence to Wenru Wang.

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Ooi, S.L., He, H., Dong, Y. et al. Perceptions and experiences of patients living with implantable cardioverter defibrillators: a systematic review and meta-synthesis. Health Qual Life Outcomes 14, 160 (2016). https://doi.org/10.1186/s12955-016-0561-0

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Keywords

  • Implantable cardioverter defibrillator
  • Perceptions
  • Experiences
  • Quality of life
  • Coping strategies
  • Leaning needs
  • Systematic review