Preserving self-concept in the burn survivors: A qualitative study
Background: Burn injury is a devastating experience affecting all aspects of a person's essence, including his/her identity and perception. These patients require complex cognitive efforts to redefine their identity to deal with difficult condition after burn injury and preserve self-concept. The experience of life after burn injury is generally a solitary one, closely related to the patients' cultural and religious context. Therefore, this study was conducted aiming at investigating burn patients' experiences regarding how to preserve self-concept in life after burn injury in Iran.
Keywords: Burn survivors, Iran, Qualitative study, Self-concept
Burn injury is a major global problem  with special importance in the East Mediterranean region, including Iran. ,, In Iran, burn injuries have high incidence and mortality rate, in that at least eight people die from burn every day. It is ranked as the third cause of mortality after traffic accidents and trauma.  Despite the survival of many of such patients, due to the recent advances in medical treatment,  psychological problems and deformities are still among the main consequences of burn injuries.  In that, devastating and traumatic effects of burn injuries on all physical, emotional, psychological, social, and economic ,, dimensions have challenged the Iranian health care system in treating, rehabilitating, and providing palliative care to such patients. 
Heavy burdens of burn injuries such as loss of function, altered appearance, and psychological distress are a threat to the patient's successful return to the life he/she had before burn and to society.  Patients may experience severe feelings of anger, guilt, and disappointment affecting their mental health and readiness for involvement in their treatment programs. ,, In addition, the pain caused by a devastating experience,  functional and aesthetic impairment,  and altered body image and social roles  negatively impact the patient's essence,  particularly his/her self-concept. 
Hopelessness, loss of meaning, and existential distress among such survivors can be differentiated from depression and is recognizable in palliative care settings. It is associated with chronic medical illness, disability, body disfigurement, fear of loss of dignity, social isolation, and a subjective sense of incompetence − feeling of greater dependency on others or the perception of being a burden. Because of the sense of impotence or helplessness, some of the survivors can predictably progress to a desire to die or to commit suicide. So understanding these experiences for nurses to plan of palliative care is essential. 
These patients need complex mental efforts to redefine their identity in struggling against difficult condition after burn injury.  Consequently, investigating how to deal with changes in self-concept in burn patients, who are experiencing complex treatment interventions, has been considered to be very important. 
In a limited number of relevant studies, ,,,, there are reports of different positive/negative experiences of identity, roles, lifestyle, relationships, and physical function as the factors affecting self-concept in burn patients. , In this respect, a number of psychological theories have shown that patients with deformities have lower self-esteem level; however, other experimental research has not supported this claim.  Some researchers have suggested that the observed changes in self-concept, measured by the questionnaire, lack adequate reliability.  On the other hand, despite a number of cross-sectional and qualitative studies on the potential impact of changes in the appearance and functions on self-esteem, a few of them have addressed compatibility with these disorders.  Therefore, researchers have suggested more in-depth investigations on the achievement and preservation of self-concept in this group of people. 
In this regard, conducting qualitative studies seems to be useful, due to their ability in describing slow recovery experience  and giving more in-depth understanding of how to achieve a new self-concept, which makes post-burn life bearable. With respect to the effect of social, cultural, and religious  dimensions of this experience, the limited number of qualitative studies, , and also different cultural and religious contexts in Iran,  investigating burn patients' experiences of how the new self-concept is formed in life after burn injury seems to be essential. Since focusing attention on self-concept in palliative care is vital, this study was conducted to investigate the burn patients' experiences of preserving self-concept in life after burn injury in Iran. Due to lack of a comprehensive plan for palliative care for burn survivors in our country, this study can be used as a conceptual framework for palliative care program in Iran.
The present work is a qualitative study, which seeks to determine, using qualitative content analysis, the true meaning and message of the deep interview conducted with the patients having survived burns. 
A purposeful sampling was used to achieve the purpose of the research. To ensure primary access to the participants, the burn patients above 20, from whose burn tragedy a minimum of six months had elapsed and who had been discharged from burn wards of Sina hospital, Tabriz, Iran were included in the present study conducted in 2010-2013.
In a qualitative research, sampling is often started purposefully aiming to select people who have experienced the phenomenon in question, and are able to offer their experiences; i.e. those rich in information to participate actively and help the researcher to understand their lives and their social interactions in a better way. This process continues by theoretical sampling, in which the selection of each new participant depends on previous samples or participants and the data obtained from them. Selection of the next subjects depends on who were selected first and what information has been obtained from them.  In the course of the study, purposive sampling is gradually replaced with theoretical sampling. At the start of the sampling, the researcher was looking for people who, as the key knower, were rich sources of information about burn experience; thus, could help to have a better understanding about the phenomenon of preserving self-concept. Sampling was performed at first through an objective-based method and after formation of initial concepts and their characteristics and spectrum, the next objectives were selected via theoretical sampling to further complete the concepts and the obtained classes, and further discover the relation between classes.
Individuals selected for the study included people who had been contacted over the phone, and having expressed their willingness to participate in the study; they were assured their information would be kept confidential. Subsequently, considering the factors affecting the burn patients' experience, 17 people were selected for the study trying to ensure maximum variety of the subjects in terms of gender, age, profession, education, the burn type, percent and severity, and of course their willingness to participate in the study. Sample size was determined by data saturation when the researchers found that no new information is emerging. General characteristics of the participants are shown in [Table 1].
The main method used for data collection was in-depth unstructured interviewing with open-ended questions. This type of interview is appropriate for qualitative research because of its flexibility and depth.  Interview with open-ended questions allowed the participants to fully explain their experiences about the phenomenon under study. All interviews were conducted by the third researcher and started off with a general question: "Could you tell us about your emotions and experiences after the burn." The following questions were asked based on the information provided by the participant and were focused on clarifying the main question that was the process of preserving self-concept. The length of personal interviews varied between 45 and 120 minutes and was 82.5 minutes, on average. All interviews were recorded, and were immediately analyzed word-by-word using MAXQD10 software. Given that in a qualitative research the researcher has to be immersed in the information,  he listened to the interviews and reviewed the typed texts several times.
In the first step, all the interviews were recorded and then immediately transcribed verbatim and used as the main data of research. In the second step, after listening carefully to the tape-recorded interviews several times and reading the transcribed material, the text was divided into meaningful units. In the third step, the meaningful units were abstracted and labeled with codes. According to the experiences of the participants, the visible and hidden meanings were identified as sentences or paragraphs, and then they were summarized and labeled with codes. In the fourth step, based on the similarities, differences and proportions, the codes implying the same theme were classified in the same category. Then, the categories and sub-categories were formed. Eventually, the main theme, which is considered aspects of experience structure was written down. ,
Using the group members' comments and suggestions, the vague and obscure points requiring more attention were discovered and revised in the next interview. Concepts were specified based on the inner content of the text, which was reviewed and revised according to all data.
During the study, some methods were used to ensure data accuracy and stability. Long-term relationship with burn survivors increases trust and makes them more willing to share the truth, which in turn increases generation of real and authentic data. Member checking or respondent validation was used to verify data accuracy and to ensure data validity. Sharing with participants some parts of the interview and his interpretations of their words, the researcher discussed his own interpretation and the meaning of participants' words with them to achieve identical ideas and concepts. Member checking, reading the transcribed interviews, revision of initial codes, categories and concepts as well as receiving the participants' feedback were all the techniques used for data validation. Data credibility was confirmed by peer review and the interview transcripts, codes, and categories were extracted. Additionally, the results were examined by three faculty members and there was compatibility between the extracted data. The researcher shared the findings with some burn survivors who were not participating in the study and data compatibility was confirmed by them as well. Interviewing with different participants, using direct quoting, and providing examples and rich data representation made the data transferability and fittingness possible. Data dependability was provided by immediate transcription of interview and re-examination of all data using the external checking. The accuracy of the data collection and analysis process according to the methodology principles was approved by professors and advisors, while it was reviewed as well in the meetings held every nine months, with experts and skilled people within the field of qualitative research; the ambiguities or drawbacks were discussed and analyzed, and consensus was finally achieved.
This study is a part of a PhD dissertation in nursing from Tabriz University of Medical Sciences, which was approved by the Ethics Committee of that university. The written informed consent was obtained from each participant. A letter providing information about the study and the rights of participants was distributed to the participants. Participants were told that they were free to accept or reject to participation in the research.
The text obtained from interviewing 17 participants with burn experience was considered as the analysis unit [Table 1]. The concept of "self-locating" as the essence of participants' experience in transition from different stages (i.e. occurrence of accident, transferring to hospital and hospitalization, discharging from hospital and returning to home, and finally to society) was extracted from following four categories: (A) self-exploration (exploring the changes in one's life), (B) others' exploration (exploring the changes in the life of family members and the relationship between self and others), (C) position evaluation (self-position analysis), and (D) self-concept preservation.
Findings showed that participants were involved with mental processes in transition from the accident phase to returning to society, and in an effort to preserve self-concept against the threat in different physical, emotional-psychological, spiritual, behavioral, and value dimensions. This mental process included self-exploration, others' exploration, and position evaluation, which helped the understanding of the current position and choosing facilitating activities for that transition.
At the first stages after an accident where burn injury posed only physical threat, self-exploration mainly included focusing on severe and unbearable feeling of pain, dealing with wounds, and wandering in oppressive atmosphere of the burn ward.
A participant described the experience of pain as follows:
"When they took us for dressing, when they poured water on the wounds, it was like knocking nails into the body, one by one. The wounds were terrible and the ward had a very bad atmosphere (p. 6)."
Self-exploration continued after discharge, returning to home, and gradual reduction of physical pain by exploring bodily changes.
According to a participant, "I could see unhealed skin grafts, wounds on my face, I needed my family's help in doing even a small thing (p. 1)."
The inevitable continuation of life and the need for interacting with others were the common experience of the majority of participants from the third stage, i.e. return to society. At this stage, the burn continued affecting the life and interpersonal relationships. Over this course, the goal of self-exploration was to investigate the results from such efforts as covering of scars and cosmetic surgeries to correct deformities and physical limitation. A young female participant said:
"It made me sad when I saw people looking at me strangely in the street. I underwent a number of surgeries but my hands were not still in good shape and I had a burn scar on my face. Because of that, I always had gloves and tried to blur the burn site by wearing make-up (p. 7)."
For the participants, the fourth stage was like a period that they had time to think about all dimensions and events. For some participants, burn memories continued to affect how they control and value their lives, even after 10 or 20 years. At this stage, helpful and hindering thoughts ran through the participants' mind on a set of frightening and traumatic memories of the previous stages. That is why self-exploration took place through self-struggling, engaging in inner dialog, fantasizing, and dreaming.
According to a participant, "I always feel pain and agony, they never leave my heart, when I think by myself. I say, why?. Nothing turned out as I wanted, maybe it is not in my hand. This is what destiny is. Your life changes (p. 3)".
Another young participant said, "I was dreaming the past, [when] I was not burnt and went out with my friend. (p. 5)".
Focusing on the burn consequences in family, exploring changes in interactions, and paying attention to social issues by the participants are among the characteristics of this category. In the initial stages, with participants wandering in the gloomy atmosphere of the burn ward and observation of other patients and families in agony, the others' exploration mechanism gets activated in parallel with self-exploration. Another participant talked about her experience:
"There were two rooms at the end of the corridor in the hospital for seriously injured patients. From there, dead bodies were taken out one after another (p. 3)."
The same participant added about the effect of burn on his/her family: "You can imagine what happened to my mother when she heard about it. That night I woke up from my mother's crying. (silence.her eyes filled with tears) (p. 1)."
After being placed in a new position at home, exploration of the others continued by investigating the effect of burn on personal life and relationships. A number of participants called the cost of treatment-induced economic burden on the family and/or the time spent for caring them as "imposing strict conditions on family life."
"Since I was burnt, my sister devoted her life to look after me. She even didn't go to work for three months. My father is retired. I know how much he suffers from the heavy burden of all these costs and agonies (p. 11)."
By joining them, participants began to investigate the changes in the way others interact with them, through the same mechanism. A young man said:
"Some of my friends were ashamed of walking with me on the street. because everybody looked at me with curiosity or pity (p. 8)."
Another participant said, "When you go to a public place, it seems that something is going on, all look carefully. especially common people. with lower educational degree. They sometimes ask kind of questions, which eventually make me sad. (p. 1)."
Making comparisons and arriving at conclusions were among the characteristics of this category. Findings from the participants' experiences showed that they arrive at a new position based on: (A) analyzing and comparing their conditions after burn with before that, and (B) evaluating and judging their individual and social positions, and their distance away from their dreams, goals, and desires in life.
For some participants, this new position was interpreted as an unusual and unnatural position. In this regard, the participants expressed such experiences as "changing to someone else, duality." For example:
"After a while when I recognized that I was not the same person, that I had changed, I felt very desperate. At home I was a person, outside someone else (p. 6)."
While some participants imagined themselves in a position caused by "bodily and capability changes," where they could be the same person again with the same spirits, beauty, and close family ties by healing of their wounds; they, considered burn as something that had only affected their appearance and capabilities:
"Eventually, one comes to terms with it, but you are no longer the same person, I used to work hard! But I can't now. I should behave differently. I am the same person with the same characteristics though, I only have problem with my leg (p. 4)."
Burn patients employed such strategies as putting efforts and struggling, substituting the roles, dealing with deformities, paying attention to health, coping with pain, getting themselves busy, escape, violence, getting along, secrecy, and absorbing energy resource in transition from the accident to society. The result of their efforts was self-concept preservation, ranging from maintaining the previous body image, being aware of the new body image, accepting the new body image, and rewriting the self-concept.
During the first stage, which was mainly filled with the feeling of pain and agony, participants sought to preserve their previous image by denying the severity of injuries and hiding their pain and agony from their families, as well as misrepresenting the conditions. These efforts contributed to intensified pain caused by strict treatments and cares, as well as the agony of being dependent on others. In addition, participants felt that they could prevent imposing more pain and agony to their families by means of such behaviors.
"Change dressing pain was very severe. It was like skin removal. I was crying and shouting.because the pain was really terrible. Despite this, I tried to bear it. After that immense pain, when my parents came, I sat comfortably and upright to prevent them from becoming sadder (p. 1)"
By arriving at home, participants mainly tried to preserve themselves from the understood changes, to improve their awareness, and to obtain new information. Part of this awareness was acquired by the participants themselves. For example, a participant said:
"When I was discharged from the hospital, I still had problem in my leg, but no one instructed me. When I found my leg severely infected, I visited the specialized hospital on my own (p. 4)".
The other part of this awareness was acquired through interactions, examining others' reactions to the wounds, and seeking information from them. A participant said:
"When the family came and saw my conditions, they said these wounds would gradually crumple, you should do something. Then, they suggested that I visit a good doctor in Tehran (p. 7)".
At this stage, the participants' attention was focused on health and efforts to obtain information about and awareness of their new body image.
With participants entering into society and due to the consequent need for more interaction with others, they have to accept their new body image to preserve themselves in these interactions. Indeed, getting used to the new conditions and shifting from disturbing experiences to new ones such as the feeling of gratitude, calmness, feeling of pleasure, and raising spirit on the one hand, and performing such activities as self-care, role substitution, engaging in something, and improving personal relationships on the other hand, contributed to this acceptance. Accepting the new body image paves the way for normalizing the new life by acquiring new skills and behaving and interacting with others more easily. In this way and by getting involved with the normal flow of life, the participants not only followed their normal roles, but also to some of them the injury was like an opportunity for spiritual growth.
The participants said:
"After the burn accident, my attitudes towards plenty of things changed, I grew up, now I know what to do when someone gets sick. how a burn patient suffers, how to behave toward him/her (p. 7)."
"I was jealous and thankless, but now I prostrate a thousand times a day (p. 9)."
Although self-preservation moved toward the acceptance of the new body image with acquiring awareness of it, this study could not distinguish a clear time border between the two stages.
Findings showed that living with burn injuries was a live experience of an internal journey for the participants; a mental journey from awareness to acceptance, where one moves from home to society, and life activities move from falling into the habit to getting normal. However, they were not sure about the duration of this experienced journey, most of them mentioned a period between four and eight years, during which they got used to living with burn injuries.
Regardless of returning to a normal life, memories of the burn accident still remained in the mind of participants who had passed a long time since the accident. Preserving self at this stage, which was occurring in parallel to other life stages, was in a mental context of the past memories, successes and current losses, and dream of future achievements.
"When I look at my pictures, I don't want to see that my condition has changed, my story has completely altered.Sometimes I crack up. Now, I am obsessive, depressed, I cannot stand anything, I am so exhausted (p. 6)."
The participants' activities for preserving self-concept at this stage were in the form of a reciprocal effort to obtain or maintain independence, change life priorities, focus on life's achievements and successes, and/or display such behaviors as threatening others, escaping, and getting along passively.
Finally, depending on the factors, affecting individual and social life, the action/interaction process makes them rewrite themselves appropriately or inappropriately. According to a participant:
"You can never forget those memories, but when time passes and you see yourself ahead of others in several things, these are actually helpful. It is no longer important, looks no longer matter, you have other priorities, you just do your own business, I think financial independence is the most important factor, meaning you are not dependent on others, and then entertainment and other enjoyments (p. 1)."
Findings showed that the participants achieve the "self-locating" issue through such mechanisms as self-exploration, others' exploration, and position evaluation. This concept refers to a new understanding of one's position in the process of surviving and returning to society. Morse (1995) illustrated this process in the form of vigilance, enduring, and suffering.  The "self-locating" concept, which is subjective in nature, manifests as preserving the previous body image, awareness of the new body image, acceptance of the new body image, and finally rewriting the self-concept, at each stage of transition toward returning to society. The "self-locating" concept prepares the subjective context for choosing the strategies that fit one's current position at each transition stage. However, based on the effective external,  internal,  and interpersonal factors,  entering into and transition from this path differ from person to person.
Based on a qualitative meta-analysis of the studies, investigating human responses to threats from diseases, Morse (1997) combined two theories of Illness Constellation Model and Preserving Self, a five-stage model, in which self-comforting strategies were embedded for preserving the self.  However, the described stages in this theory have been properly given as a comprehensive model based on other theories; the presented concepts as well as the border of each stage is not clearly developed.  In addition, in terms of the new concept, a clear description of people's mental processes has not been provided. This study provides further description of the burn patients' mental process by explaining such concepts as self-exploration, others' exploration, and position evaluation. In addition, it presents a number of assumptions about self-concept over the post-burn course.
During the course from occurrence of the accident to physical stability, self-exploration is usually done by focusing on severe and intolerable feeling of pain, facing with the wounds of the selves and of the other patients, and wandering in the oppressive atmosphere of the burn ward. In addition, observing the suffering endured by the family members is the result of the exploration of the others within this period. By means of position evaluation, one searches for the conditions, where he/she is capable of tolerating the current pain and suffering. Consequently, he/she looks for the strategies to be employed for preserving his/her previous integrity by downplaying the damages and preserving his/her previous image.  Rejecting the severity of damage at the time of the accident and during the first days of hospitalization, denying the pain, and pretending to be looked calm and elegant when visiting the family are all proofs of repression of emotions by the participants of this study. Moreover, other experiences such as refusing to see the wounds in some studies are examples of trying to deny the severity of the damage and preserving the previous body image. 
At this stage, pain is considered to be one of the most tormented sensory receptions.  When the pain is severe, its onset puts major stress on the patient, in a way that it attracts all of his/her energy and attention to self-preservation.  The patient feels that he/she is threatened and humiliated. , At this stage, maintaining emotional control to endure all types of fear or phobia of physical threat is essential.  This condition may relieve the patient.  Morse (1997) showed that suppressed emotions, during the enduring to survive, places the person in a state of "shut down." 
The present study showed that at this stage, "self-locating" helps the patient in enduring the suffering from severe pain, aggression toward bodily realm, and dependence on family in doing daily activities. However, other studies show that when there is a severe pain, people employ pain preventing strategies like distraction, shutting it out, focusing on something like staring at the ceiling, and/or disembodying.  In a grounded theory-based study, which has investigated the processes from the rehabilitation aspect, suspecting, reading the body, observing, overwhelming, maintaining emotional control, and accepting help are introduced as the first human responses to the threat against his entirety at the vigilance stage. 
After rescue and survival, the continuation of life is a principle for these patients.  The results from this study indicate that at this stage, the main mental activity of the participants is having awareness of their new selves. This awareness is acquired through focusing on the altered appearance or others' reaction to self.  Based on the present study, this awareness in a group of patients is limited to bodily changes and in the other group is represented in the form of a global change. It sometimes is understood based on the expressed experiences, i.e. "changing to someone else." At this stage, self-locating will help self-image awareness, i.e. understanding one's present position.
When people admit their fears along this path, they will begin controlling and investigating their body. Acknowledging the seriousness of the situation indicates people's awareness of selves, environment, and anything making them involved internally or externally.  In a phenomenological study, Moi et al. (2008) extracted the concept of "a new bodily awareness" as the essence of burn patients' experience of life. A new and difficult awareness of the limitations, acquired by seeing a strange and vulnerable body, sadness, disability, and insecurity.  In this regard, a number of researchers have mentioned the experience of "Inner Dialogue", i.e. communications that patients have in their heads, which help and guide them toward patience. 
Awareness of the altered appearance and the new self-image, as a part of burn injured patients' experience,  is one of the most important psychological variables affecting their life quality  It plays an important role in short-term  and long-term adaptability.  Nonetheless, despite acquiring extensive knowledge , from psychometric evaluations,  further information is still required to understand the differences observed in personal experiences of such patients.  The importance of the present findings, compared to the majority of quantitative studies that have investigated the short-term effects of burn injuries, is their focus on long-term experiences of burn patients.  Based on these findings, mental problems are more problematic than physical ones.  In addition, the social reception level, adaptability and emotions, and such characteristics as introspection are all affecting adaptability with new situations. 
In this respect, findings from the present study showed that after 1-8 years and acquisition of awareness of the new position, the patient gradually enters another stage by observing wound healing and normalization of others' behaviors, listening to the experiences of the preceding burn patients, and specially finding out that the appearance of burn scars is downplayed by close friends and relatives. At this stage, self-locating encourages people to endeavor to seek ways of acquiring further capabilities. Then, by going through this path, acceptance of the new self-image is cultivated.
Despite what was said, the risk of dissatisfaction with the new body image always affects adaptability and life quality of such people.  By accepting the new body image and returning to normal life, exploration of the self and the others focuses on the values, beliefs, and life expectations' achievement level. Burn patients value and judge the quality of life by evaluating the achievements, as well as comparing their life before burn with their post-burn life, and/or with the life of others. Deformities can lead to lack of social skills,  with increased level of shyness, social anxiety, rejection, and behaviors associated with fear and shame.  They can also impair one's satisfaction with life and his/her functions by entering the patient into a faulty social cycle.  In this regard, peoples' internal contexts should not be ignored. Studies show that psychosocial problems, as important causal factors, precede burn injuries in causing post-injury adaptive immune reactions; in that, in some moderate burn-injured patients, returning to a normal life has been challenging even after full recovery.  In addition, those who receive further social support from friends and relatives, during the position evaluation stage, enjoy a more positive body image and self-esteem than others. 
The present study identified the concept of "self-locating" as the essence of patients' experiences at different stages after burn. This phenomenon, described in form of self-exploration, others' exploration, position evaluation, and self-concept preservation subcategories, will help clearing and understanding relevant comprehensive theories. However, further investigations are recommended to understand the consequence of this phenomenon in the palliative care process of burn survivors.
Burn survivors are engaged with a complex mental process at all stages from post-accident, transfer, and hospitalization to returning to home and society. In this way, they achieve self-locating through exploration of the self and the others and position evaluation. Self-locating refers to understanding the present position and choosing such activities that preserve them from changes.
The obtained results can be used as a conceptual framework for understanding the burn survivors' response to self-concept changes in life after burn. In addition, the concepts presented in this study can be employed to design rehabilitation and palliative care models in compliance with the existing cultural context in Iran. They can also contribute to an active and dynamic life.
The authors thank the burn survivors who participated in the study and so generously shared their experiences with us. This study was supported by The Research Council of Tabriz University of Medical Sciences. This article is based on a part of the third author's doctoral dissertation from Tabriz University of Medical sciences.