Introduction:
Implanting pacemakers can create some challenges for the patients. Some studies report the possibility of change in the body image, problems in psychosocial adaptability and life quality, as well as mood disorders.[1,2] Therefore, information on the disease experience and possible factors helping the patient realize health and disease will enhance the patients’ self-care and boost the specialist’s training.[3,4]
Leventhal’s self-regulatory model regards illness perception analysis.[5,6] The theory states that any component of illness perception (cognitive and emotional representation) can influence the patients’ behavior in response to disease symptoms.[7] One study suggested that the way patients realize their heart attack affects the route to recovery.[8] Yet, another study showed that one of the important forecasting factors for psychosocial reactions versus the disease is the illness perception of the patients with pacemaker, irrespective of their disease severity.[4]
Since patients’ experience recognition is important for nurses [9], scientific reports investigation and criticism reveal scientific gaps on supporting the patients with pacemaker mainly caused by less attention to their experiences and their description.
In this regard, some researchers believe that understanding of disease experience which is an individual phenomenon is only possible through qualitative studies.[10,11] Some other researchers also believe that the patient’s perception of disease is effective through Leventhal’s model.[9,12] But nursing pays a special attention to health care and the corresponding activities are formed based on a holistic system.[13] Therefore, the present study was carried out using mixed method design approach through which the experience of patients with pacemaker can be realized qualitatively and quantitatively beyond simple numbers and words.[14]
Consequently, the present study was conducted to explain “illness perception and experience of patients with permanent pacemaker considering qualitative and quantitative aspects into account.
The research questions:
- How is the illness perception of Iranian's pacemaker patients?
- What is the nature (meaning) of the illness perception of pacemaker patients?
- To what extent do extracted themes support survey results?
Methods
The present study was carried out based on mixed methodology and convergence model through triangulation method.[14] Therefore, primarily in the quantitative section, illness perception (cognitive and emotional representation) of the patients with pacemaker was assessed. To reach this purpose, descriptive research method was used. Along with a descriptive and cross-sectional study and in order to collect qualitative data [15] aiming at studying and describing patients with pacemaker experience, descriptive phenomenology was conducted, focusing on Colaizzi’s viewpoint (1978) and method.[15,16]
Participants
In order to select quantitative section samples using convenience sampling method, the patients with single/double chamber pacemaker who referred to the hospitals affiliated to Shiraz University of Medical Sciences were selected. Accordingly, the sample of quantitative section composed of a total of 150 qualified patients with pacemaker (58 females and 92 males with a mean age and age range of 58.12 ± 10.4 and 24-64 respectively) during 5 months. The sample size was calculated based on an alpha level of 0.05 and the power of 80%.
Sample selection in qualitative section was based on purposive sampling and until data saturation reached.[15,16] Totally, 10 subjects (6 males and 4 females with mean average 47.6) were selected; hence, they had the required criteria and could provide the researcher with rich and complete information.
The inclusion criteria included: patients with single/double chamber pacemaker with at least 6 months of pacemaker implantation, age of 18-69 years old, able to be interviewed for at least 20 minutes, aware of time and location, able to talk and understand Persian and able to provide the researcher with their experiences. The exclusion criteria included: severe mental disease and insertion of either AICD or CRT device.
Instruments
Quantitative data collection was carried out, using demographic inventory and Brief Illness Perception Questionnaire (B-IPQ).[18] The 9-item questionnaire was designed for quick investigation on perception (i.e. identity, cause, consequences, timeline, control/cure and illness coherence).[18,19] The items 1-8 were presented in a Likert scale with 10 sections. item 9 investigated causative demonstration by an open-response question which requires the patient to list 3 of the most important causative factors in his/her illness. In spite of using this tool in different studies and societies [20], BIPQ psychometrics specifications were also assessed at a sample of Iranian patients with pacemaker; the content validity (CVI>90%), face validity (qualitative and suitable) and in order to determine the reliability, stability of the questionnaire was assessed (0.88) by test-retest method.[21]
In qualitative section, using semi-structured interviews as well as field note and observation, we collected the patient’s data (the subjects also participated in qualitative section).[14] Totally, 13 interviews were done with 10 participants during 35 and 45 minutes in each round, respectively.
Data analysis
In quantitative section, considering research goals, statistical analyses were conducted using. In this regard SPSS for Windows (Version 19 SPSS Statistics; IBM Corporation, Chicago, Illinois, USA) was used.
Descriptive and Non-parametric statistics procedures were used to characterize the sample and regarding categorical variables, respectively. Spearman correlation was used in order to find possible relationships. Also analyzing the open-ended question related to the cause of the illness perceived by the samples was performed qualitative and then descriptive. Statistical significance was set at the 5% (P < 0.05) level.
Data analysis in qualitative section was completed first by gathering data based on the third to ninth phases of Colaizzi (1978) methodology of phenomenology. Therefore, in this phase and proceeding description and gathering of intended phenomenon, the participant’s statements were read. Then main phrase was extracted, themes were organized, and a comprehensive description was written.
To ensure the rigor of this section, member checks were evaluated by the participants and investigators in order to determine the representativeness of the qualitative data and the fit between the data and codes. Detailed memos were kept to describe the coding and categorization of the codes obtained in data analysis and to document changing views of data. An external auditor reviewed the codes and categories to ensure trustworthiness of the analysis as well.
Research ethics
All ethical issues including describing and expressing the research aims and obtaining the informed consent for observing and interviewing, making necessary coordination for attending the research environment, paying attention to anonymity of participants and being able to discard were taken into account in all research phases.
Results
Participant’s specifications
Total of 150 individual participated in quantitative and 10 in qualitative sections; their demographic specifications are displayed in Table 1.
Table 1: Sample demographics and clinical characteristics. |
Variable |
Quantitative section |
Qualitative section |
Frequency |
percent |
Frequency |
percent |
Age (Mean ± SD) |
58.12 ± 10.4 |
47.6 |
Sex |
|
|
|
|
Female |
58 |
38.7% |
4 |
40% |
Male |
92 |
61.3% |
6 |
60% |
Marital Status |
|
|
|
|
Single (divorce & widow) |
47 |
31.3% |
3 |
30% |
Married |
103 |
68.7% |
7 |
70% |
Living Status |
|
|
|
|
Alone |
12 |
8% |
2 |
20% |
Together |
138 |
92% |
8 |
80% |
Education |
|
|
|
|
Under Diploma/Diploma |
138 |
92% |
7 |
70% |
Higher Education |
12 |
8% |
3 |
30% |
Occupy Status |
|
|
|
|
Occupying |
122 |
81.3% |
7 |
70% |
Retired |
12 |
8% |
2 |
20% |
Unemployed |
16 |
10.7% |
1 |
10% |
Pacemaker Mode |
|
|
|
|
Single Chamber |
31 |
20.7% |
1 |
10% |
Dual Chamber |
119 |
79.3% |
2 |
20% |
Cognitive and emotional representations (illness perception) of pacemaker patients
As shown in Table 2, the surveyed units in quantitative section considered disease affecting their lives (consequences) (6.51). Their disease coherence was in a very low level (2.08). They reported the disease as rather chronic (time line) (6.30), controllable (3.88) curable (6.15). Also, they reported the signs and symptoms of the disease (identity) in a medium level (4.00); the emotional representation or disease effect on their spirit has been medium too (4.43). Concerns reflecting cognitive and emotional representation were considered to be medium (5.05).
Table 2. Illness perception (Cognitive and emotional representations) of pacemaker patients |
Mean (SD) |
Component |
6.51 (2.04) |
Consequence |
6.30 (3.12) |
Timeline |
3.88 (2.51) |
Personal Control |
6.15 (2.33) |
Treatment Control |
4.00 (2.22) |
Identity |
5.05 (3.47) |
Concern |
2.08 (2.14) |
Coherence |
4.43 (3.10) |
Emotional representation |
Stress (32%) and lifestyle (29.2%) were reported to be the most important factors leading to disease (cause).
In order to determine the relationship between the patient’s different cognitive and emotional representations, Spearman correlation test was used. Results are shown in Table 3, indicating that patients experiencing the disease with more severe signs and symptoms considered it as a less chronic disease (r=-0.350, p<0.001), were much concerned about the disease (r= 0.319, p=0.02), and described it as significantly affecting their spirit (r=0.232, p=0.04). Less illness coherence was correlated with less controllability (r= 0.34, p=0.01) and less curability (r=0.320, p=0.02).
Table 3. Correlation of cognitive and emotional representations of pacemaker patients |
|
Consequence |
Timeline |
Personal Control |
Treatment Control |
Identity |
Concern |
Coherence |
Emotional representation |
Consequence |
1.000 |
|
|
|
|
|
|
|
Timeline |
.150 |
1.000 |
|
|
|
|
|
|
Personal Control |
-.028 |
-.075 |
1.000 |
|
|
|
|
|
Treatment Control |
.129 |
-.023 |
.090 |
1.000 |
|
|
|
|
Identity |
.031 |
-.350** |
-.184 |
-.120 |
1.000 |
|
|
|
Concern |
.340* |
-.060 |
-.130 |
.011 |
.319* |
1.000 |
|
|
Coherence |
.150 |
-.212 |
.332* |
.320* |
.185 |
.015 |
1.000 |
|
Emotional representation |
.320* |
.055 |
-.181 |
.014 |
.280* |
.645** |
.016 |
1.000 |
*. Correlation is significant at the 0.05 level (2-tailed). |
|
**. Correlation is significant at the 0.01 level (2-tailed). |
|
The nature (meaning) of the disease experiences of pacemaker patients
The obtained results in the qualitative section included 5 themes and 19 subthemes, as represented in Table 4.
Table 4. The findings of the qualitative section |
Basic theme |
Subsidiary theme |
Life with pacemaker |
-
Life getting normal with pacemaker
-
Imagination of living with pacemaker
-
Accepting life with pacemaker
-
Resisting acceptance of life with pacemaker
-
Being suspicious in accepting life with pacemaker
|
Nature of pacemaker |
-
Pacemaker meaning,
-
Urgency
-
pacemaker companion
|
Perceived consequences |
-
Anxiety
-
Lack of consolation
-
Isolation
|
Relief |
-
Recovery
-
Consolation
-
Awareness
-
Hope
-
Trust in God
|
Balance in control |
-
Preserving control
-
Lack of control
-
Support
|
Life with a pacemaker
Pacemaker implantation resulted in life with it combined with acceptance, being suspicious and resistance against the new situation, positive and negative imaginations about it and a life get in to norm with pacemaker.
A 32 year old male patient said:
“I thought following this pacemaker implantation, my life and work would be limited, and I thought it might prevent me from working and living properly.
Nature of the Pacemaker
Patients living with pacemaker have recognized its nature combined with its meaning, how it attached to them and urgency, which is integral component of its quiddity. Some participants declared that the device meant life and survival to them.
A 40 year old woman expressed:
“Pacemaker is compensating for my heart problem; it is protecting my heart and is a real encouragement to me and my heart.”
Some others thought of pacemaker as a companion which stays with them as long as they are alive. They pointed to the chronic aspect of the disease in different manners.
Perceived sequel
In addition to disease recognition, treatment decision and even after implantation, the participants experienced anxiety and concern regarding their situation at present and in the future.
Relief
Relief is a theme which, in contrast with the perceived consequence theme, points to subjects who found peace, despite their disease and pacemaker implantation. Previous problems reduction, awareness of the disease, and patient-device care were among other reported factors in relieving. Trust in God played a role as well.
Balance in control
A range of lack of non-controlling to preserve-controlling combined with support, was obtained. Amid occasional excluded authority of life matters, family and relative supports helped to have a better control on the condition.
A 64 retired male patient said:
“I had to put batteries into my heart. But as much as my heart needs the battery, the battery needs checking as well. So, I refer to the clinic from time to time for setting up the device.”
Discussion
In the present research, using "B-IPQ" based on Leventhal’s theory together with phenomenology studies, illness perception and experience of patients with pacemaker were put into consideration in order to reach findings beyond digits, statistics and generally results different from objectives. In fact, the researchers had no materialistic attitude toward the issue under the study, but they have tracked the issue with the patient's life and living.
Quantitative section
At first, patient's perceptions were reviewed together with cross-sectional studies. Results with regard to demographic information revealed that the majority of research cases were male aged 61 to 70 years. A similar study showed that the target individuals with a mean age of 58.12 and men made up the largest percentage of them.[22]
In the quantitative section, research cases were informed of diseases effectiveness on their life dramatically; however, their illness coherence and recognition were on a low level. They considered the disease as nearly chronic with the ability to be controlled and cured at a medium level. A relatively similar study findings indicated that patient's perception after heart attack and surviving the critical stage changed into chronic level and controlling and curing beliefs are being improved accordingly.[23]
Moreover, patients with pacemaker in the current study regarded stress, lifestyle, heart disease, heredity and aging process as the most important reasons of suffering from the disease. These findings are relatively similar to a study in which patients with coronary artery mentioned eating habits, heritage and stress as the causes of their illness.[24] In addition, patients, in another study, suffering heart attack, considered high cholesterol, less movement and activity as the cause of the disease.[8]
Quantitative section:
Concerning phenomenology study, disease experiences of pacemaker patients means life with pacemaker, which presents a real meaning with the nature of pacemaker, consequences, relief and control in balance. In the current study, relevant experience not only approves the previous findings in the field of pacemaker but also it includes particular and exclusive subjects that have not been reported so far.
In similar studies, experience of patients with rate management device is introduced in the theme frame "diagnosis search and therapy schedule process" 1 and also in subtheme defined as "a woman, self-care and caring of others" under theme of "device acquaintance and anonymity".[25] It is clear that in previous studies, the beginning of diagnosis, treatment and living with pacemaker are not apparently mentioned. However, with the theme called “life with pacemaker" obtained from the present study, life with pacemaker is not different from the patient's image of his or her situation, acceptance or rejection of situation or efforts in regulating or getting used to it.
“Nature of Pacemaker" is illustrated in the patient interpretation on quiddity and reality based on his/her experience and outlooks. In a study, it has been mentioned to the subtheme called “pacemaker meaning" and has expressed patient's perception on pacemakers.[25] In another study, participants have stated the pacemaker as the guarantee for living without previous nasty symptoms. Besides they have noticed “perception on implanted cardiac defibrillator device" in it.[26]
In the current study, participants stated two subthemes, “pacemaker companion" and " urgency", but in the previous study it had not been mentioned. Likewise, previous studies have pointed to a theme called getting relieved or something similar. But some terms like “awareness" [13] and “recovery" [1] were reviewed indirectly in other themes. Hence, it is possible to state that the theme “relief" and other five subthemes clearly include patients’ experience identity in getting relaxed and relieved.
Another aspect of the patient's experience with the disease is "perceived sequel". In previous studies "perceived sequel" were not stated as a core aspect of patient's experience with pacemaker and it has specifically been mentioned under the subtheme "concern" [13,26] while in the present study, getting a theme under this title and concern with the relevant subthemes can help the patients better perceive their experience with pacemaker.
The theme called "Balance in control" which is presented in the current study shows that patients with pacemaker are floated through non-controlling to preserve-controlling over situation. Previous studies had stated the theme "social partnership" and "re-domination of life" that shows that the patients were active in social roles after pacemaker implantation.[26]
Qualitative and Quantitative discussion
Integration and merging of qualitative and quantitative data in this section is intended to provide a deeper understanding of the concept.
Considering the obtained results, “time line" which is one of the six cognitive representations in Leventhal’s theory dealing with patients’ beliefs on disease treatment period and its process [24] is apparent in qualitative section contents.
In fact accompanying pacemaker, which reflects the patient's belief on the duration of having pacemaker is hidden inside the theme of "nature of pacemaker". Urgency and pacemaker’s meaning are two subthemes which with pacemaker companion, give meaning to the nature of pacemaker. Previous studies did not point to urgency and pacemaker companion. But in the present study, the companion theme, confirms the “timeline”; therefore, the subtheme “urgency” can indicate an unknown aspect of patients with pacemaker disease experience.
“Disease identity” is another area of cognitive representation aspect, [24] that although it looks similar to the “nature of pacemaker”, their meanings differ. Disease identity reflects the patients’ beliefs about symptoms and disease severity; nevertheless, the nature of pacemaker identifies pacemaker quiddity and reality based on patient’s experiences and mentality.
Leventhal’s theory also focuses on “sequel consequences” and introduces it as the person’s belief and perception about possible effects of the disease on life quality. Qualitative results of the present study also point to the perceived sequel, which along with lack of comfort theme includes the two subthemes of “isolation” and “anxiety”. Like “concern”, isolation and anxiety support emotional representation of Leventhal’s theory.
“Control” area is another aspect of cognitive representation of Leventhal’s theory and has two dimensions: “treatment control and personal control”. [24] The findings of quantitative section also point to the content "balance in control" which can support “control” area. Results of the qualitative section indicates that support is a subtheme that although doesn’t directly support cognitive and emotional representation in the present study, it exists implicitly and in the controllability and curability context.
Illness coherence or recognition is yet another area of cognitive representation, which expresses the patient’s belief about disease related matters.[18,19] In this regard, qualitative results of the present study also led to a subtheme of awareness which confirms “illness coherence”.
Relief is a theme which includes subthemes of recovery, hope, trust in God and consolation in addition to awareness. This theme didn’t have any evidence in quantitative section of the present study and regarding emotional and cognitive representation of Leventhal’s theory.
Another obtained content of qualitative section was life with pacemaker which means to accept, be suspicious and resist the new situation, positive or negative imaginations about the device and related conditions and get the life into norm with the device. But this is not mentioned in the quantitative section and the context of Leventhal’s theory. The same is true with this content in previous similar studies.
Perceived “cause” is the other cognitive representation in Leventhal’s theory.[19] Meanwhile, there is no direct evidence to the cause of disease in qualitative results. But this question being open, we assume that this area of emotional representation confirms itself.
Generally, obtained results show that the quantitative findings are more materialistic and give meaning to disease perception in the least interaction with patients’ life. Therefore, some of the obtained themes of the qualitative section don’t have vivid evidence regarding quantitative section results. In this regard, themes such as relief and life with pacemaker and subthemes like urgency were obtained as complementary aspects in perception and experience of patients with pacemaker based on Leventhal’s theory. Having the above-mentioned materials in mind, it can be said that qualitative data supports qualitative measure because qualitative results confirm the cognitive and emotional representation areas of Leventhal’s theory. So, qualitative and quantitative data are significantly convergent because in most cases it wasn’t possible to distinguish cognitive representation and themes.
Although qualitative results are convergent with the six representations of Leventhal’s theory, definite and accurate idea origination about the obtained themes, in addition to theoretical concepts of Leventhal’s model, calls for multiple and follow up studies in Iranian society, which once done, our data’s adaptation degree and style can be determined.
Conclusion
Disease perception and experience of pacemaker patients based on Leventhal’s theory mean life with a pacemaker, a device that gave them a second life and provided them with relief. Although the illness period is prolonged and chronic, it is not merely a travel in time and makes sense with pacemaker quiddity, reality and existing condition. Illness severity is defined based on the perceived sequel combined with emotional representation. Illness coherence happens while reliving.
Acknowledgment
This manuscript was approved by ethics committee of Shaheed Beheshti University of Medical Sciences (No 90-1-86-8061-1). Hereby, we thank the Deputy for Research of Shaheed Beheshti University of Medical Sciences for the financial support.
Conflict of Interest:
The authors have no conflicts of interest.
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