Most of the participants were female and were the wives, mothers, sisters, or children of patients. Most of the interviews were conducted after surgery. Most of the respondents were in the middle age group. The average age of the patients’ family members was 45 years.
Table 3 shows the characteristics of the study participants.
| Number | Gender | Age (y) | Relationship with the Patient | Type of Surgery | Interview Time: Before, After, and During Surgery |
|---|
| 1 | Male | 70 | Brother | Femur fracture | After |
| 2 | Male | 39 | Spouse | Breast cancer | After |
| 3 | Female | 45 | Child | Spinal canal stenosis | During |
| 4 | Female | 40 | Sister | Cesarean section | After |
| 5 | Male | 60 | Father | Cleft palate repair | After |
| 6 | Female | 50 | Sister | Hysterectomy | After |
| 7 | Female | 45 | Sister | Leg fracture | After |
| 8 | Female | 37 | Sister | Leg fracture | After |
| 9 | Female | 56 | Child | Hemorrhoids | After |
| 10 | Female | 25 | Child | Pelvic fracture | After |
| 11 | Female | 41 | Child | Laminectomy | During |
| 12 | Male | 77 | Spouse | Laminectomy | During |
| 13 | Male | 48 | Spouse | Cervical herniated disc | After |
| 14 | Female | 36 | Sister | Cesarean section | After |
| 15 | Male | 35 | Spouse | Cesarean section | After |
| 16 | Female | 55 | Child | Pelvic fracture | After |
| 17 | Female | 33 | Child | Leg fracture | Before |
| 18 | Female | 51 | Sister | Hysterectomy | After |
| 19 | Male | 30 | Child | Hysterectomy | After |
| 20 | Female | 47 | Mother | Cesarean section | After |
| 21 | Female | 40 | Sister | Cesarean section | After |
| 22 | Female | 62 | Sister | Bowel surgery due to cancer | After |
| 23 | Female | 60 | Mother | Ovarian cysts | Before |
| 24 | Female | 33 | Child | Bone structure repair | After |
| 25 | Male | 26 | Child | Bone structure repair | After |
| 26 | Female | 33 | Nurse | | |
| 27 | Male | 24 | Nurse | | |
| 28 | Female | 28 | Nurse | | |
| 29 | Female | 42 | Physician | | |
After conducting 29 interviews, 811 primary codes without overlap, 446 primary codes with overlap, 36 subcategories, 11 generic categories, and 4 main categories were extracted (
Table 4).
| Main and Generic Category | Subcategory |
|---|
| 1- Endless confusion | |
| (a) Struggle to be optimistic | Fantasy expectations; magnified hope |
| (b) Trapped in a cage of tension | Bitter acceptance of surgery; being swallowed by ambiguous circumstances; self-blame |
| (c) Struggle to calm down | Choosing spirituality; ignoring worry; aimless and scattered look for information; looking forward to the end; looking for help; involuntary recalling of past memories |
| (d) Struggle to be seen | Fearing; always being ignored |
| (e) Lasting disappointment | Intentional ignorance of the family; meaninglessness expectations |
| 2- Giving the family a share in the care | |
| (a) Family control over the care | Notifying the family of all the care details; obtaining information from the family; access to the healthcare team |
| (b) Valuing the comments of family | Pain control as the basis of care; doing things well |
| 3- Exaggerated focus on obvious behaviors | |
| (a) Fear of not seeing cooperation | Absence of care coordination; teamwork skills failure |
| (b) Seeking sympathy | Being wishful for the nurse’s friendliness; trying to empathize with the nurse; desire to play the advocate role by the nurse; trying to trust the nurse; hope for the physician’s compassion; considering the patient as a human being |
| 4- Accepting the existence of the family | |
| (a) Permanent connection with the patient | Always be informed of the patient’s condition; a constant presence at the patient’s bedside |
| (b) Pleasant environment | Tolerable atmosphere; comfort; financial concerns; privacy; controlling obvious mistakes |
4.1. Main Category 1: Endless Confusion
This main category is about the difficult conditions that the family experiences. They face high stress and, at the same time, try to be seen; however, the effort is usually unsuccessful. Generic categories include the struggle to be optimistic, trapped in a cage of tension, struggle to calm down, struggle to be seen, and lasting disappointment.
(a) Struggle to be optimistic: Subcategories include fantasy expectations and magnified hope. Sometimes, the families consider the surgery a miracle. They have bizarre expectations of surgery, some of which might not be met after surgery.
“I expect that surgery makes my patient as he was before.” (P. 19, a family member)
If the surgery does not meet the expectation, the family will not accept such a result.
(b) Trapped in a cage of tension: Subcategories include bitter acceptance of surgery, being swallowed by ambiguous circumstances, and self-blame. Sometimes, families are hesitant to accept the surgery. This, along with the inherent unpleasantness of the surgery, makes most of them unhappy with their decision. Sometimes, the family’s sense of being forced to accept surgery ends with unreasonable decisions.
“Sometimes the families are forced to accept the surgery, it can make their condition worse.” (P. 26, a nurse)
Family experiences emotions, such as “prolonged moments during surgery” (P. 18), “being overwhelmed by stress” (P. 9), and “a sense of helplessness” (P. 13). Sometimes, families blame themselves for an incident that has harmed the patient or necessitated surgery.
“Sometimes, I feel guilty. My mother fell ill due to her children.” (P. 24, a family member)
(c) Struggle to calm down: Subcategories include choosing spirituality, ignoring worry, aimless and scattered looking for information, looking forward to the end, looking for help, and involuntary recalling of memories. One of the most common ways to reduce stress is to choose spirituality. Sometimes, the family tries to deny, ignore or forget the surgical event, and therefore relieves the stress. Education received from a physician and nurse or sometimes searching the Internet can reduce or even increase stress. Additionally, when the surgery is finished and the patient leaves the operating room, family stress is greatly reduced.
“I am happy to see the patient when she comes out of the operating room, and I see her healthy, now I am happy.” (P. 19, a family member)
The family considers healthcare team behavior as one of the ways to reduce stress and expects the nurse/physician to somehow contribute to reducing stress.
“Nurses gave us good feeling and hope.” (P. 24, a family member)
Almost all participants in the hospital recall their experiences with the hospital settings, especially bad ones.
“We were in hospital A. They had heart surgery. Nursing was awful.” (P. 1, a family member)
(d) Struggle to be seen: Subcategories include fearing and always being ignored. Nurses and physicians do not give families the opportunity to express reasonable demands. Sometimes, the family is afraid of expressing a protest. They do not find a supporter and are concerned about losing the services they receive.
“I always have to thank because the nurse does not care about me. Maybe, the nurse stubbornly does not do my job.” (P. 7, a family member)
Many participants pointed out that the nurse or physicians explicitly ignored family needs.
“We have to beg the nurses to take care of our patients.” (P. 22, a family member)
(e) Lasting disappointment: Subcategories include intentional ignorance of the family and meaningless expectations. The nurse’s failure to meet the family’s needs, the belief that the family should not expect, and ignoring the family cause the family to feel hopeless. Some participants compare Iranian nurses to those in other countries.
“I myself have never been in medical centers abroad, but I have heard many times that in overseas hospitals, staff and nurses are very kind.” (P. 9, a family member)
In addition, there is a myth that the family must not have expectations.
“What do I need here? I am just looking after my patient.” (P. 1, a family member)
4.2. Main Category 2: Giving the Family a Share in Care
The family expects to be involved in the care, to be asked for their opinion, and to be informed of all details. Generic categories include family control over the care and valuing the comments of the family.
(a) Family control over care: Subcategories include notifying the family of all the care details, obtaining information from the family, and having access to the healthcare team. Many families were unhappy with the treatment plan; they believed the family was not involved in the decisions.
“They must let us know about our patient’s condition.” (P. 21, a family member)
The family would like to receive any care information about their patient and the necessary instructions.
“We were not told that there was a pain control pump.” (P. 14, a family member)
Moreover, the family expects the nurse to be always available in the ward.
“At the night shift, all nurses slept.” (P. 1, a family member)
(b) Valuing the comments of the family: Subcategories include pain control as the basis of care and doing things well. The matter that greatly increases family stress is the uncontrolled pain after surgery or even before and the lack of pain relief.
“I want the patient not to have pain. This is the biggest problem after the surgery.” (P. 2, a family member)
However, the family’s unfamiliarity with the pain relief and the nurse’s authority to administer painkillers disrupts the nurse-family interaction.
“The family thinks that the patient should sleep all the first night after surgery comfortably.” (P. 26, a nurse)
In addition, the nurse’s proficiency is fully monitored by the family, and even the family states that postoperative care is more important than the surgery itself. Primary care is also important.
“Cleanliness care, using the bedpan, cleaning the blood coming from the surgery cut, and bed linen... These are important.” (P. 2, a family member)
Moreover, families have some expectations from physicians, including postoperative visits, anesthesiologist and consultant physician visits, considering the pain, and educating.
4.3. Main Category 3: Exaggerated Focus on Obvious Behaviors
This main category shows that the family judges and makes decisions based on what they see, such as the obvious and visible behaviors of health service providers. A lack of effective interactions within the healthcare team gives a sense of insecurity in the family and the patient. Additionally, the family tries to gain sympathy in a usually unsuccessful attempt. Generic categories include fear of not seeing cooperation and seeking sympathy.
(a) Fear of not seeing cooperation: Subcategories include the absence of care coordination and teamwork skills failure. Nurses’ lack of effective interaction with physicians is very evident, and families can easily realize it. Nurses also emphasized this issue.
“The doctor shouts, instead of thank us. He thinks we did not do the orders correctly.” (P. 26, a nurse)
In addition, unprofessional behaviors of the nursing staff, such as incomplete care transfer, were reported by the families.
(b) Seeking for sympathy: Subcategories include feeling wishful for the nurse’s friendliness, attempt to empathize with the nurse, desire to play the advocate role by the nurse, attempt to trust the nurse, hope for the physician’s compassion, and considering the patient as a human being. The codes suggest that nurses need to change their behavior to establish new relationships with the family and depart from the previous stereotyped patterns. Perceiving carelessness, violence, and disrespect are major barriers to effective nurse-family interaction and deprive families of their confidence. Nevertheless, nurses find themselves unable to meet much of the family’s expectations.
“There are so many expectations of families that the nurse cannot meet.” (P. 27, a nurse)
Families try to understand the nurse.
“Nurses are overworked individuals, with low pay and many duties.” (P. 8, a family member)
On the other hand, nurses have multiple roles, including advocacy and counselor roles.
“I think you should calm the patient down. Nurse should tell the family that we care for the patient.” (P. 26, a nurse)
The nurse’s proficiency, job experience, the way he/she communicates with the family, and the nurse’s decisiveness are the factors that play a crucial role in establishing a good relationship.
“You have to introduce yourself. You should tell the families that if you have a problem, inform me. Interaction is essential.” (P. 26, a nurse)
The family needs to trust the physician to receive the attention and affection of the physician and to be well-mannered behaved.
“When you support the patient and the family psychologically, the patient recovers sooner.” (P. 29, a surgeon)
The last subcategory is expecting a humanistic attitude from healthcare providers.
“I expect the hospital staff to not see the patient as a tool or a repetitive thing.” (P. 7, a family member)
4.4. Main Category 4: Accepting the Existence of the Family
This main category implies that the hospital setting must be designed in a way that at least one family member can constantly stay beside the patient, and the comfort of the family is also important. Generic categories include a permanent connection with the patient and a pleasant environment.
(a) Constant connection with the patient: Subcategories include always being informed of the patient’s condition and constant presence at the patient’s bedside. Physical contact between the family and the patient reduces their stress.
“I expect the hospital to understand. The nurses understand that the patient needs me to be there.” (P. 2, a family member)
One of the reasons for the family is the lack of trust in the nurse.
“I came here to look after my patient. I feel if I sleep, you do not care for my patient.” (P. 1, a family member)
In addition, the family tends to be involved in care in some way.
“I massage her when she has pain. When she has a fever, I always keep a cool napkin. I have a feeling that I can alleviate the pain.” (P. 18, a family member)
(b) Pleasant environment: These codes are about the physical setting and managerial matters, including tolerable atmosphere, comfort, financial concerns, privacy, and controlling apparent mistakes. Many hospitals have old, unreconstructed, gray, and dark buildings. Non-clean sheets and clothes, an unclean environment, and messed up beddings are the things that upset the family. Many hospitals are overcrowded. There is also constant noise pollution throughout the day and night.
“The space must be much happier. Everything is dark here. It has no sense of life.” (P. 14, a family member)
Many hospitals do not have assigned space for families. There are no chairs or beds available for relaxation, or they are not comfortable if they are available.
“We sat down in the lobby since the morning we arrived. There is no waiting room to sit there.” (P. 14, a family member)
Family facilities, such as access to tea, warm food, and a place to pray, are not anticipated or, if available, have minimal quality. All the above-mentioned items make the hospital environment frustrating, boring, and tedious.
“If I want to stay the night, I do not know where to rest.” (P. 3, a family member)
Hospital expenses are also a preoccupation for families.
“I just expected it to be less expensive.” (P. 9, a family member)
Many families would like their patient’s nurse to be the same gender or the male staff to inform them before entering the room.
“It is very different the nurse is a woman or a man. Sometime, we had a sick woman. I wanted to care for her. I felt like her family member who was a man would not like me to do it.” (P. 27, a nurse)
Some families have previous experiences with medical mistakes and are worried about their repetition. On the other hand, nurses find themselves defenseless against a doctor or hospital management.
“When I work in two or three shifts continuously, the risk of mistakes increases. When I make a mistake, they should not blame me because I am exhausted.” (P. 27, a nurse)