25 subjects (14 nurses, 6 family caregivers, and 5 burn patients) were included in the present study. The age ranges of the nurses, family caregivers, and patients were 28-54, 22-41, and 24-48 years old, respectively. The work experience of the nurses ranged from 2 to 28 years, with the average of 13.71± 9.78 years. The demographic characteristics of the participants enrolled are presented in Table 1.
Table 1 The themes and categories of this study
Themes
|
Category
|
Creating an intimate atmosphere
|
Empathy
|
Effective communication
|
Dedicating time to the patients
|
Showing respect
|
Respect for human equality
|
Respect for patient autonomy
|
Respect for beliefs and values
|
Avoidance of pity
|
Comprehensive support
|
Pain relief
|
Psychological support
|
Social support
|
Data analysis yielded three main themes as follows: creating an intimate atmosphere, showing respect, and providing comprehensive support. In this regard, these themes and their categories are shown in Table 2.
Table 2 The demographic characteristics of the participants
No
|
Participant
|
Position
|
Marital Status
|
Education Level
|
P1
|
Nurse
|
Staff nurse
|
Married
|
Bachelor
|
P2
|
Nurse
|
Staff nurse
|
Single
|
Bachelor
|
P3
|
Nurse
|
Matron
|
Single
|
Bachelor
|
P4
|
Nurse
|
Head nurse
|
Married
|
Bachelor
|
P5
|
Nurse
|
Staff nurse
|
Married
|
Bachelor
|
P6
|
Nurse
|
Supervisor
|
Single
|
Master
|
P7
|
Nurse
|
Staff nurse
|
Single
|
Bachelor
|
P8
|
Nurse
|
Supervisor
|
Married
|
Master
|
P9
|
Nurse
|
Staff nurse
|
Single
|
Bachelor
|
P10
|
Nurse
|
Staff nurse
|
Single
|
Bachelor
|
P11
|
Nurse
|
Staff nurse
|
Married
|
Bachelor
|
P12
|
Nurse
|
Staff nurse
|
Married
|
Bachelor
|
P13
|
Nurse
|
Staff nurse
|
Married
|
Bachelor
|
P14
|
Nurse
|
Staff nurse
|
Single
|
Bachelor
|
P15
|
Family Caregivers
|
Housewife
|
Single
|
Diploma
|
P16
|
Family Caregivers
|
Housewife
|
Single
|
Diploma
|
P17
|
Family Caregivers
|
Employee
|
Married
|
Bachelor
|
P18
|
Family Caregivers
|
Self-employed
|
Married
|
Illiterate
|
P19
|
Family Caregivers
|
Self-employed
|
Single
|
Diploma
|
P20
|
Family Caregivers
|
Housewife
|
Married
|
Illiterate
|
P21
|
Patients
|
Employee
|
Married
|
Bachelor
|
P22
|
Patients
|
Housewife
|
Single
|
Diploma
|
P23
|
Patients
|
Self-employed
|
Married
|
Diploma
|
P24
|
Patients
|
Housewife
|
Married
|
Illiterate
|
P25
|
Patients
|
Self-employed
|
Single
|
Diploma
|
Creating an intimate atmosphere
One of the most important findings of the study, which was referred by all the participants, was creating an intimate atmosphere. From the participants' perspective, providing a high-quality care to patients while maintaining their dignity requires a cordial atmosphere for nurses, patients, and patients' families. By kindly behaving patients and dedicating time to them, nurses can build emotional intimacy with patients and also impart a sense of comfort, trust, and respect to them. Moreover, from the participants' perspective, intimacy with patients is the key to be sympathizing with them, which allows patients to discuss their problems with their nurses easily. This theme is comprised of 3 categories as follows: empathy, effective communication, and dedicating time to patients.
Empathy
From the viewpoint of the caregivers, empathy is of great importance in burns departments due to the special nature of burn injuries and the conditions under which the patients are. Since burn patients' health and quality of life are usually affected by their injuries very seriously and they are hospitalized for longer periods, nurses have more time to be empathetic to the patients. Correspondingly, this type of relationship helps nurses understanding patients better and then supporting them more effectively. Every burn patient needs physical and psychosocial cares due to his/her specific needs. Regarding showing empathy for burn patients, one participant stated that:
"A burn patient needs a lot of empathy and emotional closeness; in fact, empathy is complementary to our treatment process. No matter how good the care we provide is, it is not going to work without empathy…"(P1)
From the nurses' point of view, burn patients are less likely to complain from pain when they realize that nurses empathize with them, so nurses can help the patients more effectively.
"When I imagine myself in his [a burn patient's] position, it helps me a lot in understanding his issues and concerns, and then I can help him more ..." (P6)
Effective communication
From the participants' point of view, good communication skills, including clearly speaking, using facial expressions, making eye contact, and attentively listening, play major roles in healing burn patients as well as reducing their suffering and increasing their satisfaction. According to the patients who participated in this study, the dignified care is possible through a proper and effective communication. It was indicated that only when nurses talk to patients and use body language, patients are encouraged to ask their questions and express their concerns and requests. From the participants’ point of view, the dignified care is a function of nurses’ use of verbal and nonverbal communications to identify the best strategy for each patient for the purpose of managing their pain and other issues as well as coping with their current situation. Most of the participants stated that the dignified care is influenced by caregivers’ communication skills and intimacy.
The patients believed that caregivers’ use of kind words during caring, addressing the patients by such terms as “dear,” and appreciation of the patients’ patience at the end of painful procedures are among the communication skills, which help preserving patient dignity during caring them.
“There was a nurse here who had always used kind words like “dear” and “sweetheart to address the patients whenever she wanted to talk to them ... Her kind words showed that she cared about the patients …” (P21)
According to the participants included, nonverbal forms of communication are considered as an indispensable part of dignified care, which reflect the nurses’ feelings and perceptions of patients. Listening well and making eye contact with patients are signs of giving value to patients and making an effort to understand their concerns. With respect to nonverbal communication skills, one patient stated:
“My nurse listened to me well … she made eye contact with me every time she wanted to talk with me … her behavior made me feel valuable …” (P22)
The nurses believed that burn patients can express their concerns more freely when nurses establish an effective non-verbal communication with them.
"I hold my patients' hands, sit next to them, listen to them, and smile at them, all of which will raise their spirits and allow them to talk about their worries ..." (P8)
According to the conducted interviews, burn patients need care combined with kindness and compassion. This kind of care makes the patients feel valued and believe that their dignity is being maintained.
"I start a friendly relationship with my patients and try to make them feel emotionally close with me. This makes them to feel valuable…" (P2)
The participants stated that, due to burn patients' prolonged length of stay, they feel more comfortable with the caregivers who call them by their first names, laugh with them, and treat them just like a friend.
"I am very friendly to them and speak gently with them. I call them by their first names, and they consequently become happy and a friendly atmosphere is created as a result…" (P14)
Dedicating time to the patients
According to the interviews with the studied participants, burn patients feel more intimate and talk more freely when caregivers spend time with them. Accordingly, this also motivates patients to cooperate in their treatment process. On the other hand, nurses' failure to spend quality time with their patients creates feelings of worthlessness and indignity in them.
"Sometimes, I talk to my patients for a long time about their problems as well as my own experiences .... When the patients realize how much time I spend with them, they feel valued…" (P10)
Showing respect
From the caregivers' viewpoints, the traumatic experience of suffering a burn, painful hospital treatments, body dysfunctions, and expressions of pity from others cause burn patients feeling that they are not treated with dignity. Therefore, nurses can preserve the dignity of burn patients during caring them by showing respect for their identity and autonomy and by involving the patients in their treatment plans. The theme of showing respect consists of the categories of respecting human equality, respecting autonomy, respecting beliefs and values, and avoidance of pity.
Respect for human equality
One of the major challenges of preserving the dignity of burn patients while providing care to them, is cultural differences. The population of Iran is comprised of different races and ethnic groups. The majority of the population in Iran are Fars, but caregivers are likely to meet burn patients from Baloch, Azeri, Turk, Kurd, Lur, or Arab minorities. Patients' cultural, ethnical, and social backgrounds can affect the sense of value of the patients as well as their families.
The participants of the present study stated that all patients are equal. Accordingly, caregivers must preserve the dignity of all patients, regardless of their gender, religion, race, ethnicity, economic status, and social class. One of the nurses stated that:
"Most of the patients in this hospital are from the poor classes of the society, but we give them all the services they need, regardless of their ethnicity or social class …" (P9)
A family caregiver said:
"When a nurse fairly provides care to all burn patients, no matter what the cause of their injuries, self-immolation or an accident, this reflects the preservation of human dignity..." (P15)
Respect for patient autonomy
Another gesture that demonstrates respect for the dignity of burn patients is maintaining patient autonomy. From the participants’ points of view, patients should be free to choose their doctors and to reject or accept any recommended medical procedure. It is also important that patients must be given the chance of making their informed decisions. By providing patients with the necessary information on the different types of treatments and their possible side effects, nurses can facilitate patients’ informed interactive participation in the decisions making process around their care. The participants regarded showing respect for patients’ freedom of choice and the right to participate in their care as a sign of respecting patients’ autonomy and, by expansion, their dignity.
"It is the worst kind of disrespect to give no explanation to a burn patient. I involve my patients in their treatment plans, which encourages them to cooperate with me..." (P5)
In the present study, the nurses provided their patients with educational tools, informed them about their role in their own care process, and provided cooperative follow-up to help their patients performing their daily activities and regaining their kinesthetic abilities, which inspired patients with a sense of value. To maintain the dignity of burn patients, the participating caregivers tried to inform their patients on their treatment and showed them pictures of some healed burn injuries to help them in making better decisions.
“Some patients resist skin graft. I usually use educational pamphlets to explain their situation to them and some photos of burn injuries, which have healed after skin graft … I talk to them … In fact, by informing the patients, I help them deciding on how they want to continue their treatment … " (P1)
The patients’ experiences showed that the members of treatment teams try to encourage patients to play an active role in making decisions related to their treatment process.
“My nurses explained the purpose of everything they performed for me, like replacement of the dressing of my wounds, my medication, and its side effects … they informed me of the possible side effects of my surgery and by raising my awareness, they gave me freedom of choice … all of which made me feel valued …” (P23)
Respect for beliefs and values
According to the participants, burn patients more tend to become interested in mystical, spiritual, and religious practices after suffering from burn injuries. By providing prayer services, arranging meetings with a priest for them, and providing access to prayer books, caregivers can show respect for the patients' dignity. In this regard, one participant said:
“Many patients here believe in praying. To respect the dignity of these patients, we've provided them with a bookshelf full of prayer books and this had really helped their recovery process ..." (P5)
Avoidance of pity
The family caregivers were found to experience pitying looks and words directed at their patients, which had undermined the dignity of their patients as they believed.
The caregivers in the present study mentioned that, although burn injuries can cause serious changes in burn patients' physical functions and appearances, the patients should be treated as ordinary people and the treatment team should avoid pitying behaviors. However, the experiences of the interviewed family caregivers showed that they could detect pity in other people’s behaviors and expressions of emotions, which made it harder for their patients to tolerate their special conditions. The patients had not only forced to tolerate the pain and physical problems caused by their injuries, but also had to bear the pitying attitude of the people around them. Correspondingly, this was regarded as disrespect for patients’ dignity.
"Burns patients do not need pities, and yet some nurses pity them. For instance, they say stuffs like "Oh, poor thing!"... This can make the patient feel disrespected ..." (P5)
The family caregivers declared that they expected more professional and systematic behaviors from the treatment teams compared to others. They expected the members of treatment teams, who had received education and training in this regard, to have good communication skills and to be able to express empathy with no expression of undue pity, which could add to patients’ psychological concerns. The family caregivers’ experiences underlined the importance of avoiding pitying behaviors to maintain patient dignity.
“Patients with burn injuries need to be treated with respect … They [nurses] should not give the impression that our patients would never recover … Being pitied by others is a sign of disrespect for these patients …” (P18)
Comprehensive support
The findings of the study indicated that comprehensive support is an important contributory factor in maintaining burn patients’ dignity. It is notable that a comprehensive support consists of the following categories: pain relief, psychological support, and social support.
Pain relief
The majority of the interviewed nurses defined pain as the most important physical cause of complaint amongst burn patients. In this regard, it was shown that any slight movement or even the implementation of various treatment procedures can increase patients' pain. The participants stated that, since burn patients may suffer from multiple injuries and functional disabilities, relieving the intensity of their pain using different methods and regular evaluation of the efficacy of the measures taken into account for managing their pain, demonstrate respect for the dignity of the patients. According to a nurse:
"We have lots of patients with sustained severe injuries to their organs or those suffering from spinal cord injuries due to electrocution, and most of them are constantly complaining of pain. Having their wound dressings replaced is a really painful experience. We use partial anesthesia when we want to replace a patient's dressing. After performing the procedure, if the patient is still in pain, painkillers are administered for them. We may use non-pharmacological interventions, too ..." (P12)
Psychological support
From the perspective of this study participants, burn injuries could not only affect the patients' bodies, but also affect the psychological health of the patients and their families. Burn patients desperately need the support of the people around them, because the treatment procedures are relatively long, so they are implemented at several stages, which can be very painful, and the patients may suffer depression, isolation, anxiety, humiliation, and loss of dignity. One of the most important aspects of nursing burn patients is providing them with the emotional and psychological supports required to preserve their dignity and to facilitate their recovery.
"Once, we had a patient who was seriously ill and her husband did not allow her family to visit her. I did my best to convince her husband to change his mind .... The patient saw her family members, and afterward she just felt very valued and then recovered more quickly…" (P1)
Based on the patients’ experiences, paying attention to the emotional and psychological needs of burn patients signifies respect for their dignity. According to a patient:
“I missed my son so much during my treatment process … my nurse made arrangements with my family … they brought my child to the entrance of the hospital … my nurse put me in a wheelchair and took me to the entrance so I could see my child …" (P24)
Based on the experiences of the caregivers of burn patients, it is important to consider the origin of the patients' mental distress and then make an effort to resolve it toward maintaining their dignity.
“Herein, we have patients who are scared of death. Family visits can help them a lot to cope with this fear. For these patients, we usually assign a round-the-clock companion…" (P4)
Other measures, which can help preserving burn patients’ dignity are the followings: evaluating their mental and emotional well-being, providing them with counseling services, and ensuring collaboration among the members of the burn care team and the patients' families.
"Drug Addiction, family problems, and fear of alienation from the family and society are known as the leading psychological problems in burn patients. So, we should attempt to reduce the patients' psychological distress by raising their awareness, arranging counseling sessions for the patients and their families, removing the gaps between the patients and their family members, and facilitating cooperation between the treatment team and the patients' families ..." (P11)
Another nurse stated:
"After discharging a patient, we introduce him or her to a counseling center where they and their families can receive counseling services ..." (P13)
Social support
According to the participants’ experiences, burn patients encounter various social issues like social stigma, which can cause them to quit their studies or jobs, and divorce. These problems pose a threat to the social dignity of burn patients. In this regard, the theme of social support consists of two categories named as avoidance of stigma and financial support from family and charity.
Avoidance of stigma
This sub-theme concerns people’s wrong beliefs, criticism, and being ostracized. The participants’ experiences showed that most families believe that their patients with burn injuries had lost many of their former capabilities. Moreover, some individuals had misunderstandings on the causes of burn victims’ injuries who considered self-immolation or punishment by the patients’ parents as the cause, which resulted in their spreading false rumors about the patients’ source of injuries. According to one of the family caregivers:
“Many of our relatives thought that my sister had lost her fertility and could never have a baby …” (P20)
The patients have mentioned that they were criticized by their families and friends and also blamed for what had happened to them. In some cases, the patients’ families, especially spouses, were criticized for their manner in dealing with the patients. Some of the victims stated that they were treated as outcasts by their families and other people and consequently received less attention than they did before. According to one of the patients:
“On the subway, for example, the seat next to me is vacant and still no one takes it. It is as if they are avoiding me or do not want to sit next to me …” (P25)
Financial support from family and charity
Based on the participants’ experiences, the treatment of burn patients is often a lengthy process accompanied with anxiety and pain, which causes financial distress in addition to health complications and physical problems. The treatment of and follow-up care for burn injuries is very costly and patients often have to ask their families or relatives for financial help. Thereafter, when such requests are met, patients feel valued and dignified.
“Financially speaking, my family has helped me a great deal. Right now, they have already paid for my surgery and medication … they say they would do anything to see me completely recovered …. Well, it makes me feel valued to know that I am important to my family …” (P22)
According to the participants enrolled in this study, another issue that is a threat to the dignity of burn patients is the social problem, which rises after the event. Divorce, disintegration of the family, and stigmatization, which often cause patients to quit their studies or resign from their jobs, also are among the social harms that adversely affect the social dignity of burn patients. One of the participating nurses pointed out:
“I know many patients who decided to quit their jobs due to the inappropriate behavior of the people around them …” (P12)
From the viewpoints of the caregivers interviewed in the present study, the financial support provided by insurance companies, charity institutes, and social welfare organizations is quite limited, so burn patients view their nurses and family caregivers as their main sources of support. Therefore, nurses and social workers seek to preserve the patients' social dignity by helping them learning job skills and find new jobs and by referring them to charity centers to help them paying their treatments’ costs.
"We had a patient here whose spouse separated from her because of her facial burn marks and then she had no source of income and came to us. Herein, the personnel try to help these people in any way they can such as introducing them to charities, finding jobs for them, and buying their medications" (P10)