A total of 18 patients with TTCP hospitalized in the hospitals of Urmia, Iran, who had the greatest information about the research phenomenon, took part in this study. They comprised 10 females and 8 males, with 15 married and 3 single, and their mean age was 61.55 years (mean ± SD = 61.55 ± 9.2). The analysis of the data obtained from the interviews with the patients produced 13 subthemes and three themes, as shown in
Table 2.
4.1. Theme 1: Disregard for Patient’s Dignity
Respecting the patients’ dignity is one of the crucial ethical concepts in nursing and a basic patient right. In the present study, the patients had experienced disregarding of their rights, privacy, and values in various ways. This theme included three subthemes: Disregard for patients' rights, lack of privacy, and disregard for patients' values.
4.1.1. Disregard for Patient’s Rights
Occasionally, some measures intended to help the patients would threaten their personal independence. The patients had experienced this threat in different ways, such as not having the right to choose and not having permission to go to the bathroom without other individuals’ help. One of the patients said:
“I was taken to the operating room as soon as I went into the hospital. I had no idea what they were going to do at all. No one explained things fully to me as if I had no right to make comments or choice treatments.” (P2, female, 58 y)
4.1.2. Lack of Privacy
Most patients considered physical contact without permission, not receiving care by same-sex personnel, and disregard for their preferred clothing as a violation of their personal identity. One of the male patients explained:
“A female physician came to my bedside, pushed my clothes aside, and placed her stethoscope on my thigh at the site of the lead insertion without asking for my permission. It was very disturbing because I was not ready to be touched at all.” (P3, male, 64 y)
Additionally, most patients stated that their privacy had not been respected in the hospital, their anxiety had elevated, and their security needs had not been met. They considered the disrespect for their personal space and their exposure to other individuals as a violation of their personal security. One of the patients described:
“My room was not like a private room. There were curtains, but the nurses would not allow them to be closed either. I could be seen by everyone, and it was disturbing since I did not have proper clothing, so I felt insecure.” (P10, female, 48 y)
4.1.3. Disregard for Patient’s Values
While undergoing treatment with a temporary cardiac pacemaker, the patients were faced with conflicts that were not within the framework of their previous values and experiences, which annoyed them. Religious matters were among the patients’ foremost priorities, and performing religious duties, such as saying prayers, was one of its components. One of the patients explained:
“My body was in blood, and it was not right to say prayers like that. Moreover, they would not allow me to sit down, saying it would disconnect the lead. I had to say my prayers, but no one cared or helped. They kept telling me to be careful with the lead.” (P6, male, 51 y)
Additionally, cultural diversity among the patients was another issue. The patients cared a lot about their own culture; however, the values ruling the ward were sometimes in conflict with the patients' cultural priorities. A patient explained:
“I am a Kurd, and in our culture, the entire family comes to visit when someone falls ill. But they do not allow my family to come visit me here. When I protested, they said they could not allow so many visitors for each patient.” (P7, male, 78 y)
Another patient said:
“I have to wash up each time after going to the bathroom, but they do not let me do it here; they say that I must get used to it, which is very difficult for me.” (P15, female, 58 y)
4.2. Theme 2: Dependent Life
One of the experiences discussed by the patients was the sense of dependence, which was not pleasant for them; in brief, they felt they were not themselves. This theme consisted of two subthemes, including depending on others and depending on the pacemaker.
4.2.1. Depending on Others
After treatment with the pacemaker, the patients felt the burden of dependence on others and disclosed their experiences. Dependence on the wife, children, and nurses was not pleasant for them. One of the patients said:
“After this illness, I can no longer get my medications myself, and my children and wife have to help me. My wife has grown old, and the children have to help, but poor things, they are busy themselves” (P1, male, 70 y)
Another patient said:
"From now on, I became dependent on my children, and I could not do my work without their help. This bothers me. I do not want to be a burden on them."(P9, female, 72 y)
4.2.2. Depending on the Pacemaker
The patients regarded the pacemaker as a donated heart that had saved their lives for now, and therefore, their lives depended on the pacemaker’s functioning. They had, therefore, become very sensitive about its proper functioning. A patient told us:
“I kept watching the nursing station to see if the nurses were paying any attention to my pacemaker or not because I would die if it did not function well. My life is now dependent on the proper functioning of this device.” (P4, female, 48 y)
4.3. Theme 3: Physical and Psychological Problems
Despite saving their life, the patients also experienced many problems with TTCP. With regard to physical and psychological problems, they pointed out issues that made up the following subthemes: Back pain, problems related to the legs, constipation caused by immobility, fear, anxiety, life in prison, wishing to return to normal life, and a disturbed outlook.
Back pain: This subtheme describes how the patients experienced pain in the course of the treatment. Most patients complained about their backache. One of them described his experience of pain as follows:
“My back ached all the time for lying on my back, and the pain was very severe. If there was a kind nurse in the shift, she would give me a painkiller to relieve the pain a bit; otherwise, the back pain would kill me.” (P13, male, 69 y)
Problems related to the legs: Other physical complications experienced by the patients were problems related to the legs. A patient described his experience:
“They bandaged my legs every morning as I woke up; as if they were bandaging a corpse. It made me feel bad, but they said they had to bandage my legs.” (P8, female, 80 y)
In addition, the immobility of the lower extremities due to restrictions caused numbness in the patient's legs. A patient described:
"Both my legs had become numb since I was told not to move them. I thought I had no limbs waist down, but they ached when I moved them.” (P11, female, 68 y)
Constipation due to immobility: The majority of the patients complained about constipation and recalled it as a bad and annoying experience. One patient explained:
“The thing that annoyed me most was constipation. I had not been to the bathroom for three days, and my stomach ached, and the medicine they gave did not work.” (P7, male, 78 y)
Fear: Patients, especially those with no previous experience of heart disease, had a sense of fear following their experience with the temporary pacemaker and gave various reasons for their fear, including fear of dying, fear of returning to the operating room, and fear of lead dislodgement. One of the participants said:
“When I went to the operating room and came back, I thought I would die. They had inserted a lead through my leg into my heart; how could I live after that? I was so afraid. I did not sleep that night until the morning.” (P5, female, 66 y)
Anxiety: Most participants had experienced pre-operative anxiety, which had been caused by their unfamiliarity with the procedure and delayed treatment. One of the participants said:
“When their work was finished in the emergency ward, they took me to the operating room, where I lied down on the bed for half an hour, and they said that the doctor had not arrived yet. The doctor’s late arrival had gotten me very anxious.” (P11, female, 68 y)
Another patient described:
“It was my first time seeing these, and I was very anxious. I had no idea what they were going to do.” (P10, female, 48 y)
Living in prison: The physical limitations caused by the temporary pacemaker lead inserted into their groin and the loss of freedom in personal affairs resembled life in prison for most patients. One patient explained:
“I was on my back the whole time, and they would not even let me sit up. I felt I was imprisoned. As soon as I wanted to turn to one side, they told me to lie on my back. It was very unpleasant.” (P4, female, 48 y)
Wishing to return to life quickly: The participants had accepted the insertion of the temporary cardiac pacemaker as a way of being saved from death and wished to recover as soon as possible to be able to return to their normal life. One participant said:
“I had no choice. I wished to be released from this situation, so I could get out of the bed, eat like I always did, and do my things as usual.” (P12, male, 55 y)
Disturbed outlook: A wide range of ambiguities and concerns about the future had mentally preoccupied the patients. A farmer patient explained:
“I kept thinking what would happen to my plots, and who would attend to them; the children would not. It is highly unlikely for me to be able to work again; that is, if I survive at all.” (P3, male, 64 y)
Another participant described:
"I am deeply worried. I do not know what the future will be like. I do not know if I will get well or if I will be involved in this disease. I have no hope for a good future."(P12, male, 55 y)
| Themes | Subthemes | Codes | Frequency |
|---|
| Disregard for the patient's dignity | Disregard for patient’s rights | Not being allowed to use the bathroom alone | 16 |
| Having no right to choose | 12 |
| Lack of privacy | Physical touch without permission | 25 |
| Disregard for the patient’s preferred clothing | 21 |
| Not receiving patient care by same-sex personnel | 14 |
| Being in other individuals’ sight during the procedures | 16 |
| No respect for their private space | 14 |
| Disregard for patient’s values | Not being able to perform their religious duties | 31 |
| Previous personal habits | 17 |
| Personal hygiene culture | 18 |
| Cultural diversity | 10 |
| Dependent life | Depending on others | Feeling dependent on the nurses | 19 |
| Dependent on the children | 18 |
| Dependent on the spouse | 18 |
| Depending on the pacemaker | Pacemaker as the pulse of life | 16 |
| Sensitivity to the pacemaker’s functioning | 22 |
| Understanding the need for a pacemaker through Simulation | 9 |
| Physical and psychological problems | Back pain | Constant backache | 35 |
| Great back pain | 31 |
| Constantly being in the supine position and back pain | 35 |
| Severe back pain and receiving no treatment for it by nurses | 18 |
| Problems related to the legs | Feeling tightness in the groin at the site of lead insertion | 12 |
| Pain in the operated leg after removing the lead | 14 |
| Pain in the groin during lead insertion | 18 |
| Numbness in the legs | 15 |
| Inflammation and having no sense in the legs | 13 |
| Numbness in the legs, especially in the operated leg | 11 |
| Having no sense in the lower limbs | 10 |
| Unpleasant feeling in the legs during the day caused by bandages | 23 |
| Assimilating their bandages to the way a corpse is wrapped | 17 |
| Leg bandaging as an imitation of death | 14 |
| The leg bandages are painful | 11 |
| Constipation caused by immobility | Having a tight stomach due to lack of bowel movement | 32 |
| No bowel movement for 3 days | 27 |
| Stomachache due to lack of bowel movement | 25 |
| Stomachache caused by the inability to defecate on the bed | 22 |
| Fear | Fear of dying | 29 |
| Fear of going back to the operating room | 18 |
| Fear of lead dislodgement | 22 |
| Anxiety | Anxiety caused by unfamiliarity with the procedure | 26 |
| Anxiety due to delayed treatment | 13 |
| Living in prison | Imprisonment | 24 |
| Annoying physical limitations | 26 |
| Wishing for a quick return to life | Wishing for recovery | 19 |
| Hoping to recover with a pacemaker | 16 |
| Treatment acceptance | 15 |
| Disturbed outlook | Concern about the future | 17 |
| Ambiguities about the future | 14 |