Experiences of people hospitalized with burns: in the light of oral history

Carlos Jordão de Assis Silva1, Mônica Gisele Costa Pinheiro1, Deyla Moura Ramos Isoldi1, Francisca Patrícia Barreto de Carvalho1, Gisele Santana Pereira Carreiro1, Clélia Albino Simpson1.

1 Federal University of Rio Grande do Norte

ABSTRACT

Objective: To describe the experiences of people hospitalized with burns. Method: A descriptive exploratory study, with a qualitative approach, carried out with 14 employees, in a reference hospital for the treatment of burns in the state of Rio Grande do Norte, between March and May 2016, using the Oral History as the collection method and methodological framework. Bardin's thematic content analysis was used, which resulted in the emergence of four thematic axes that guided the discussions: memories of the past; the moment of the burn; behavior in relation to burned skin and the treatment and outlook for the future. Results: During hospitalization there is a feeling of appreciation for life, longing, pain, anxiety, idleness, desire to work and hope. Conclusion: It is inferred that the hospitalization of the burned person is complex which involves physical, emotional and social factors, directly reflecting on their behavior, desires, actions, reactions and response to treatment.

Descriptors: Burns; Life-changing events; Hospitalization; Nursing.

INTRODUCTION

 Burns are a serious public health problem in Brazil, not only in terms of the severity of injuries and the large number of complications, but also in terms of the sequelae that effect the burned person. Each year, 2 million people suffer burns and the Unified Health System (SUS) invests around 55 million in the treatment of these users (1-3).

Burn victims need specialized care both for their physical and emotional fragility, as well as for the severity of the injuries that cause the loss of fluid volume, which can cause a hypovolemic shock, metabolic changes, body deformities and risk of infection, in addition to complications from the actual burn (2).

In the burn treatment process, the individual's hospitalization exposes them to physical and emotional stressors, such as separation from family, absence from work, body changes and depersonalization. Regarding injuries, depending on their extent,  scars may remain that can cause physical, emotional and social damage resulting from the distortion of self-image and physical suffering, morphofunctional limitations; lifestyle changes and social role due to the negative perception of self-image due to scars and bodily changes leading to a long period of treatment and rehabilitation of the individual in society (4-6).

The experiences of burn treatment are influenced by biological, psychological and social factors. In this period after the burn, the patient goes through a painful process in which the body is vulnerable and weakened, and their mind is negatively affected by the change in the appearance of their own body. Thus, they develop emotional responses to their clinical condition, including fear, worry, sadness, longing, anxiety and pain. These components refer to the perception and coping with the burn even during hospitalization, influencing how the person adjusts to this situation and what care the individual needs. (7-10).

Nursing care for the burned person, specifically during hospitalization, occurs by promoting the physical and psychological stabilization of the burned person, intervening in the family's psychological needs, clarifying doubts and making necessary referrals after hospital discharge.  In addition to the work of conscientious professionals in a Burn Treatment Center (CTQ) human affection is important to minimize the feeling of suffering, improve the quality of life of the burned person during hospitalization, contributing decisively to efficiency and recovery speed (1,11,12).

In this context, it was noticed that burns causes significant physical and emotional toll on the affected person, who describe their hospitalization and recovery as long, complex and difficult, therefore it is necessary to understand the difficulties experienced during this time in order to guide nursing care to these patients and to provide a more comfortable hospitalization and to minimize sequela.

The motivation for this research came from the academic experience during undergraduate classes on Nursing Care for patients with integumentary disorders, which fostered reflection on the importance of the skin for the individual as it promotes organic homeostasis, functionality, is an object of human significance, well-being and self-identity.

The present study is justified by the need for the nursing team to know and recognize how the person  with burns experiences hospitalization and thus stimulate reflections regarding care strategies consistent with the situations faced during this period, as well as thinking about referrals that can support the monitoring of treatment and the successful rehabilitation of the subject.

When considering that the burn and the treatment of the burned person involve complex and subjective issues, in addition to the pathophysiology, the question is: "How does the burned person experience hospitalization?", In order to answer this question, the present study aims to describe the experiences of people hospitalized due to burns.

METHOD

 This is a descriptive exploratory study, with a qualitative approach using Oral History (OH) as a methodological framework. OH is a method that aims to develop studies related to the social experience of people or groups (13).

There are four characteristic universes in the OH technique: the destination community, the colonies, the networks and the zero point (13). In this study, the destination community corresponds to burn victims in the State of Rio Grande do Norte (RN); the colony, people hospitalized with burns in a public reference hospital in the city of Natal / RN; the networks were formed from the indication of employees in the inaugural interviews; the zero point was the person with a burn hospitalized for prolonged clinical treatment at the Burn Treatment Center (BTC).

The study was carried out at the BTC in the Monsenhor Walfredo Gurgel Hospital, located in Natal, the capital of RN. A form was used to collect sociodemographic and clinical data, and a semi-structured script with open questions was used to guide the interview in order to collect qualitative data referring to the hospitalization experience. The audios of the interviews were recorded on an mp3 device.

 In total, 14 participants who were burn victims and who were hospitalized in the BTC from March to May 2016 were interviewed.  The following inclusion criteria were followed for participant selection: be 18 years of age or older, be aware, and be physically and emotionally capable of answering the interview questions. Those who were in isolation were excluded. The interviews were performed at the bedsides of the bedridden collaborators, or in a reserved room for those who were mobile. The companions were absent during the interviews in order to provide more privacy to the collaborator.

The names of fruits native to the northeastern countryside were used in the place of patient names in order to guarantee anonymity. During the dry season, the hinterland appears to be dead, apparently nothing else will grow or sprout, however, when winter comes and the rain hydrates the land,  the greenery quickly takes over the landscape, the trees are reborn and in a few weeks, they , who before appeared to be dead, begin to bear fruit, these fruits provide nourishment to the struggling people who live there, called the sertanejo. These fruits are the most intense and true symbol of life and hope. In this way they are also burned people, who during hospitalization experience many moments of suffering and hopelessness, however they are able to overcome these situations, rebuild themselves and give everyone around them the strength, courage and resilience.

All procedures for performing the oral life history method were performed in chronological order as shown in Chart 1.

Chart 1. Description of the steps taken in the Oral History methodology, 2020, Natal / RN.

Source: own authorship

The full text was shared with the research participants and the collected information was validated by signing the assignment letter. Finally, the analysis of the interviews, and the stories of narrated lives was carried out, composing of the textual corpus, which was analyzed using the thematic content analysis technique of Bardin (14), with the following steps: pre-analysis, coding, treatment of results, inference and interpretation. Four thematic axes emerged: 1) Memories of the past; 2) Moment of the burn; 3) Experiences and behavior in relation to treatment and the burned skin and 4) Outlook for the future. These axes were compared with published studies, corroborating and substantiating the analytical considerations of this research.

The study followed the ethical principles of Resolution 466 of 2013 of the National Health Council, which provides for research with human beings. All participants in this study voluntarily accepted to participate in the study by signing the Free and Informed Consent Term, as well as the voice recording authorization term. The research protocol was approved by the Research Ethics Committee of the Federal University of Rio Grande do Norte, under opinion 1,249,870.

RESULTS

Among the 14 participants in the network, 93% (n=13) are male. The predominant age group among employees is 36 to 59 years old, which represents 43% (n=6) of the total sample. It was also observed that 79% (n=11) of the patients have a low level of education and 57% (n=8) have an income of up to one minimum wage. Among the total number of patients, 93% (n=13) live in RN, 65% (n=9) in the interior of the state.

Regarding the length of stay, about 71% (n=10) of the employees had been hospitalized for more than 15 days and 50% (n=7) for more than 30 days. Concerning the severity of the injuries, 64% (n=9) had 2nd degree burns, 71% (n=10) 3rd degree burns and 35% (n=5) 4th degree burns.

The following four thematic axes were categorized, through the aggregation and definition of common elements:

Memories of the past

 In this thematic axis, the narratives are focused on a retrospective of their lives prior to being burned. In the reports, descriptions of everyday life can be observed and thus draw a parallel with the current condition of life after suffering the burn.

When asked about their lives before the burns, employees claim to have normal lives, fulfilling their obligations, independently carrying out activities of daily living and living with the family, as noted below:

My life was working, I took care of the house, my old man, went to buy milk, made his porridge, washed clothes, planted and harvested, raised chickens, turkeys, pigs and goats. (Mrs. Guava)

 Before the burn my life was good, really good! I worked, I didn't have any disease, I did my activities, everything was normal. (Mr. Acerola)

 I had a normal life, I worked on everything, I did everything ... I had a good relationship with my family. (Mr. Mangaba)

 Date of collection: March to May 2016.

The moment of the burn

 In this thematic axis, the moment of the burn is described, the moment when the person is helpless, desperate and without certainty of the future, they feel the heat passing through the skin, destroying it, gradually taking its vitality. The fear of death at the time of the burn is strongly reported by the participants:

I was crazy, I thought I was going to die, the fire was growing higher and higher, I was desperate. (Mr. Passion Fruit)

 At the time I was afraid, afraid of the fire catching all over me. (Mr.Guava)

 I really thought that I was going to die, I really did! At the time of the accident, I could only ask God to get out (the car was on fire). (Mr. Mangaba)

 Date of collection: March to May 2016.

Experiences and behavior towards treatment and burned skin

 In this regard, the treatment and experience of the burn are the focus of the narratives. During the analysis, four subcategories emerged: Pain resulting from the burn, Valuing the family and affective bonds, Anxiety as a stressor during hospitalization and Absence from work during hospitalization.

Pain resulting from the burn

During the interviews, all employees mentioned pain as the main burn symptom during hospitalization, and is an important factor when thinking about the burn experience, as we can see in the excerpts below:

This pain is unbearable for me! (Mr. Pitomba)

 I feel a very intense pain, I can't compare to anything I've ever lived. (Mr. Umbu)

 I think I endured a pain beyond what a human being can endure. (Mr. Cajá)

 Date of collection: March to May 2016.

Regarding pain, the narratives also revealed information about the agents that trigger and intensify pain such as dressings, baths and physiotherapy:

The pain is unbearable during dressings and baths. (Senhor Guava)

Bathing is very difficult, it hurts ... when I go to bathe the pain worsens, the bath itself is painful. (Mr. Cajá-manga)

I've already had a dressing done without anesthesia and very painful, an unbearable pain, the worst part is removing the bandages because they are stuck to the skin, it hurts a lot. (Mister Acerola)

Physiotherapy hurts a lot, because it is healing, there it is shrinking (the skin), but you have to do it (physiotherapy). (Mr. Passion Fruit)

 Date of collection: March to May 2016.

Based on the reports it is evident that pain is real and intense, by experiencing this intense pain, the burned person develops negative repercussions regarding sleep and rest routines, as well as changes in food intake as a result of a poor appetite, as can be seen in the statements presented below:

When I had this pain, I didn't eat, I immediately lost my appetite and couldn't sleep. (Mr. Passion Fruit)

Pain makes it difficult for me to sleep, I even ate less because of the pain. It hurt and a lot, I woke up tired, I wasn´t in the mood for anything. (Mr. Pitomba)

Date of collection: March to May 2016

Valuing the family and affective bonds

 Even during hospitalization, employees mentioned appreciating the family and inter-family relationships, manifested by the desire to be close to the family and expressed dissatisfaction and sadness for being away from their family and friends.

It is very difficult to stay away from my family. (Mr. Jambo)

 Staying here is not good, because I am far from my family ... if I was close to the family it would be better! (Mr. Passion Fruit)

 The worst thing is the desire to return to my home (crying), I really want to go home, to be close to my family. (Mr. Mangaba)

 Collection date: March to May 2016

Anxiety as a stressor during hospitalization

Anxiety and idleness are strongly present in the statements, the participants report that during hospitalization there are no activities for the development of personal and interpersonal relationships with the use of time in a productive, playful and positive way, as we can see below:

It is boring here, there is nothing to do, what helps me not to feel sad anymore is reading the bible and going outside (communal space) to clear my mind, this helps to avoid getting upset, or becoming afraid that your burn will hurt, because there are times when so many others say that their burn is hurting and then yours starts to hurt too. (Mr. Cajú)

It is very complicated, there is nothing to do here. (Mr. Jambo)

Date of collection: March to May 2016.

Absence from work during hospitalization

 In relation to the hospitalization period, during the interviews, the participants explained that the desire to return to work and provide for the family remains, as shown below:

I miss my job a lot. (Mr. Mangaba)

I miss the money, because first we have to be healthy and then money, if we don’t have it then we are worth nothing! (Mr. Mandacaru)

I feel suffocated here because I can´t work. (Mr. Jambo)

 Date of collection: March to May 2016.

Outlook for the future

 In relation to this thematic axis, the data analysis revealed the existence of the feeling of uncertainty in regarding their body image, during the interviews the concern about the scars, mutilations and functional changes after the burn are constantly present, however, the feeling of valuing life in relation to loss is also observed, as expressed in the statements below:

I don't know if the scar will remain, but it is very likely that it will. (Mr. Passion Fruit)

 I can have a scar, a “little abnormality”, I think everyone will ask. (Mr. Cashew)

You will be sad because you lost two fingers, but it's nothing, you can take it, better to lose two fingers than your life. (Mr. Pitomba)

 Date of collection: March to May 2016.

The concern with returning to work is also an object of the feelings of uncertainty of burned people, as is evident in the following excerpts:

Now my life will change because I will not be able to work. (Mister Acerola)

 Maybe I will need to stop working, due to the burn, because I can't work in these conditions. (Mr. Cajá-Manga)

 The biggest problem will be my job, because it is a physical job, I will have to look for a less physical job, it will take me longer to do my work. (Mr. Jambo)

 Date of collection: March to May 2016.

Finally, expectations for the future after treatment are related to the possibility of sequelae and physical-functional limitations caused by the burn, which causes feelings of concern, sadness, feeling of invalidity and anguish, as noted below:

My life will change, before I used to live alone, but now I won't be able to do it anymore, I'll need help from other people. If I lose my finger, how will it look? I've always been a fighter. (Mrs. Guava)

Maybe I will have to stop working due to burns (crying), because I can't work in these conditions. (Mr. Manga)

Now my life will change because I will not be able to work. (Mister Acerola)

Date of collection: March to May 2016.

DISCUSSION

 In this study, the male gender was the most affected, this is explained due to the behavior of this population, which is characterized by the marked ability to explore the environment, excessive motor activity and less caution, representing a greater risk of accidents with burns (15,16).

The age group of employees consists of economically active individuals, in line with other studies (16, 17). The high number of injuries in adults of working age causes an important social and economic impact. The fact that the patients are mostly from the countryside of the state is due to the location of the sample being a specialized center for the treatment of burns (17,18).

A burn is an accident that occurs in an abrupt way, the person is injured, in an urgency/emergency service, and their routine is changed abruptly, the pain, deformities and dressings make it impossible to perform their chores,  adding to the uncertainty of returning to their occupational and social activities(19).

It appears that the study participants perceive themselves as being active before suffering the burn, and consider having had a normal life, giving importance to work/occupations, ADLs, care for the home and family life. Occupations define the person, being a means of expressing and being recognized through doing. They also build a personal identity, through which health and well-being is promoted. However, the burn keeps people away from these occupations, making it impossible to perform them independently (20).

Although human beings are able to recognize death as a certain and natural element, the desire to live forever makes the way of seeing and dealing with terminality a challenge, in people with burns the vision about the process of death and dying causes feelings considered bad. In this perspective, when health professionals take care of these patients, interactions can also prove to be difficult and, as they commonly feel responsible for maintaining the lives of these individuals, they see death as a professional defeat (21).

During the burn experience where the person feels exposed, vulnerable and close to death and the common feeling is fear. The difficulty of dealing with the end causes death to arouse fear in human beings, perhaps, in these cases, the fear of a painful death and the search for religious contexts shows that faith contributes to the establishment of a sense of coherence and control over life, which positively affects people's health status (22).

Care for people with burns is one of the most complex types of care, often requiring a multidisciplinary team specialized in the burn pathophysiology, the treatment has the ultimate goal of saving lives, conserving function and returning the patient to social life, however it is marked by pain, because these injuries are among the most painful that the human being can bear (23,24).

Burn pain is generally related to specific activities, such as wound cleaning, debridement, bathing, dressing changes and physical therapy (24).

Therefore, dressings appear as one of the main causes of pain, since the dressing materials can stick to the wound bed and when removed cause trauma to that region, as well as the countless daily dressing changes due to the high amount of wound exudate, therefore nurses must be careful when performing the dressings and when choosing the products to be used on the wounds (25).

The discomfort caused by the pain reflects in the appetite, preventing the intake of calories and nutrients essential for this clinical condition that manifests a greater degree of hypermetabolism. The nutritional deficit can lead to sepsis, increases the risk of complications, contributing to increased mortality (26).

The sleep/rest pattern is also impaired by pain, it is noted that the participants stated that they could not sleep, feel tired, unwell and apathetic, which directly reflects on their recovery/rehabilitation.

It should be noted that burn pain makes the experience more traumatic for those who experience it, so identifying pain as the 5th vital sign suggests that the evaluation must be automatic, and should be evaluated in all patients, who have the right to appropriate treatment for their pain. There is evidence that the prognosis of pain in burn patients depends on the way their pain is perceived by professionals, which indicates that understanding pain is essential (27).

Hospitalized patients experience feelings of sadness, anxiety and idleness which is related to adapting to a strange place where emotional ties are broken, and where they are exposed to illness and death. It is observed that patients with little or no expectation of doing recreational activities suffer with distress, fear, low self-esteem and little socialization, due to remaining in a lying position, in addition to silence (28, 29).

The use of art therapy in the hospital environment promotes healthy aspects, such as: remembering past memories in a more harmonious way, giving positive meaning to the disease, joy, vision of the future, desire to change, self-knowledge, self-esteem and a sense of well-being. Thus, complementary therapies such as relaxation, aromatherapy and music therapy can be used as a way to provide well-being during hospitalization (29,30).

 In addition to these activities, music therapy, aromatherapy, chromotherapy, i.e., integrative and complementary therapies, which show positive results against stress, pain and anxiety, can be included as a nursing care plan strategy, which helps patients to cope with their clinical condition and the dialogue between them and their caregiver (30).

The post-burn social interaction is increased in the inter-family sphere, which is a type of support and refuge, whereas non-family relationships are reduced. The patient's desire to work remains unchanged, which also adds feelings of longing and appreciation of work/occupation as a form of social ascension, identity and subsistence (31).

The human being does not adapt to the conditions that the natural environment provides, but needs, through work, to transform the environment in order to produce the means of its existence. So, to survive he needs his relationship with nature and work. By transforming nature, man is transforming himself, becoming a highlight in the lives of employees.

The return to work is positively associated with the quality of life of the burned person after rehabilitation, however studies show that most patients are unable to return to work after the injury due to the sequelae, feelings of concern, anguish, feeling of invalidity culminating in the absence of social participation and rupture in the roles previously assumed, these changes cause feelings of frustration, dependence and incapacity (20).

Over time, the burned person assimilates what happened and also expresses doubts about how their body will look. Concerns may arise about the possibility of trauma causing scarring, aesthetic sequelae and/or deformities (20).

Given the above, the complexity of the treatment and the experiences of the burned person during hospitalization is perceived, in this context, during nursing care, the nurse makes the Theory of Basic Human Needs, available which can contemplate the needs of that person.

It is important to highlight that due to the loss of tissue and the risk of infection, the burned patient tends to have impaired basic needs, such as, for example, oxygenation, hydration, comfort, safety and nutrition, among others. In addition to these aspects, the reports show the negative impacts in addition to the psychobiological aspects, but also psychosocial and psychospiritual ones, which interfere in the lifestyle of the person and his family (33).

CONCLUSION

The study focused on investigating the experience of people hospitalized with burns. The significant changes experienced during hospitalization are related to physical-functional limitations, reformulation of inter-family/interpersonal relationships, presence of pain, feelings of idleness and homesickness.

The study participants report feeling useful and an active before the burn, and the presence of a feeling of appreciation and longing during hospitalization. The moment of the burn is linked to intense pain and thoughts of death, the treatment in turn is painful, lonely and transformative, the burned person is concerned with their body image,  aspirations for the future, where work/occupation are the foundations for a “normal” life and the hope of healing and recovery are present.

It is inferred that the hospitalization of the person with a burn is complex, involving physical, emotional and social factors, directly reflecting on behavior, desires, actions, reactions to treatment.

The research findings can serve as a starting point for more adequate care with interventions aimed at the needs of burned patients. This assistance needs to include, in addition to technical aspects, relational and creative aspects, where care goes beyond the person with a burn, but includes the family, socioeconomic, cultural and religious realities.

Thus, the nursing team must offer qualified listening, humanism and scientificity when taking care of this audience, while paying attention to their fears, anxieties, concerns and biological needs.

Examples of nursing interventions for people with burns are: encouraging interaction between the person and their family through visits;  orientations about treatment and the importance of patient engagement in their recovery, social and occupational reinsertion; assessment and effective pain management; the development of recreational activities, such as games, reading, music therapy, aromatherapy, conversation circles and film screenings. These interventions can provide a less unpleasant and painful hospitalization, corroborating to improve the quality of life of these individuals.

Finally, this study contributes to the improvement of knowledge regarding the problem of the repercussions of burns, which will enable excellent nursing care for people with burns, based on an expanded and comprehensive perspective of health

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Received: 05/26/2017

Revised:  10/31/2019

Approved: 10/31/2019