Preserving Self-Concept in the Burn Survivors: A Qualitative Study

INTRODUCTION

Burn injury is a major global problem[1] with special importance in the East Mediterranean region, including Iran.[234] 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.[2] Despite the survival of many of such patients, due to the recent advances in medical treatment,[5] psychological problems and deformities are still among the main consequences of burn injuries.[6] In that, devastating and traumatic effects of burn injuries on all physical, emotional, psychological, social, and economic[789] dimensions have challenged the Iranian health care system in treating, rehabilitating, and providing palliative care to such patients.[10]

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.[11] Patients may experience severe feelings of anger, guilt, and disappointment affecting their mental health and readiness for involvement in their treatment programs.[121314] In addition, the pain caused by a devastating experience,[15] functional and aesthetic impairment,[5] and altered body image and social roles[16] negatively impact the patient's essence,[17] particularly his/her self-concept.[16]

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.[18]

These patients need complex mental efforts to redefine their identity in struggling against difficult condition after burn injury.[19] 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.[13]

In a limited number of relevant studies,[2021222324] 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.[2123] 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.[25] Some researchers have suggested that the observed changes in self-concept, measured by the questionnaire, lack adequate reliability.[26] 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.[12] Therefore, researchers have suggested more in-depth investigations on the achievement and preservation of self-concept in this group of people.[25]

In this regard, conducting qualitative studies seems to be useful, due to their ability in describing slow recovery experience[12] 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[27] dimensions of this experience, the limited number of qualitative studies,[2829] and also different cultural and religious contexts in Iran,[28] 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.

MATERIALS AND METHODS

Sampling procedure

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 selectedfirst and what information has been obtained from them.[31] 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 atfirst 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.

Table 1 General characteristics of the participants (p 17)

RESULTS

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.

DISCUSSION

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.[33] 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,[34] internal,[35] and interpersonal factors,[36] 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.[37] 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.[20] 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.[22] 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.[22]

At this stage, pain is considered to be one of the most tormented sensory receptions.[38] 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.[37] The patient feels that he/she is threatened and humiliated.[3940] At this stage, maintaining emotional control to endure all types of fear or phobia of physical threat is essential.[37] This condition may relieve the patient.[37] Morse (1997) showed that suppressed emotions, during the enduring to survive, places the person in a state of “shut down.”[37]

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.[21] 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.[33]

After rescue and survival, the continuation of life is a principle for these patients.[33] 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.[41] 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.[42] 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.[11] 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.[43]

Awareness of the altered appearance and the new self-image, as a part of burn injured patients’ experience,[44] is one of the most important psychological variables affecting their life quality[45] It plays an important role in short-term[46] and long-term adaptability.[47] Nonetheless, despite acquiring extensive knowledge[4849] from psychometric evaluations,[50] further information is still required to understand the differences observed in personal experiences of such patients.[44] 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.[44] Based on these findings, mental problems are more problematic than physical ones.[15] In addition, the social reception level, adaptability and emotions, and such characteristics as introspection are all affecting adaptability with new situations.[51]

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.[46] 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,[52] with increased level of shyness, social anxiety, rejection, and behaviors associated with fear and shame.[19] They can also impair one's satisfaction with life and his/her functions by entering the patient into a faulty social cycle.[44] 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.[35] 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.[36]

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.

CONCLUSION

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.