INTRODUCTION
Goffman’s works that led to the writing of “Stigma: Notes on the Handling of Deteriorated
Identity”1 had important contributions to the social study of stigmatization. The word stigma
has a Greek origin to refer to bodily signs with which it was sought to evidence something
extraordinary or evil about the person’s moral status. These signs showed that the
bearer was an enslaved person, traitor, or criminal, historically incorporated into
the effects of divine grace and physical defects, among others1.
Stigma is a situation of the individual who is unable to accept, with prospects of
being discredited fully or discreditable, originating from physical defects; individual
(mental, alcoholism, homosexuality, addiction, unemployment, etc.) or tribal (race,
nation, religion, etc.) of identity, often being named by the condition, for example,
the person with a burn sequelae as “the burnt,” with discrimination in psychosocial
contexts.
Unconventional interpretations of greater exposure can lead to extremes of victimization,
need for secondary gains, reduction of social exchange by selfisolation, and can become
an uncontrolled, depressed, hostile, anxious, confused, aggressive or shy person.
Many are sometimes discredited in the face of the unreceptive world1.
Burns are injuries that significantly contribute to increased mortality and disability
rates, resulting in at least 265,000 deaths annually. They are among the main causes
of disability-adjusted life years in low- and middle-income countries and the main
causes of morbidity and mortality worldwide2. Globally, young people between 15 and 44 are responsible for nearly 50% of injury-related
deaths worldwide. In fact, 7 of the 15 leading causes of death for people aged 5 to
29 are road traffic injuries, suicide, homicide, war, drowning, poisoning, and burns.
National and international initiatives have been carried out to prevent burns, and
the World Health Organization developed 2008 the plan for the prevention and care
of burns and, in conjunction with the International Society for Burn Injuries (ISBI),
began collecting data from Burn Treatment Centers on burn victims, in the Global Burn
Prevention Program. The program will gather information from several countries and
will be updated monthly3,4.
The coexistence of people with sequelae and physical deformities caused by burns with
those considered “normal” could lead to impaired selfperception, which could generate
feelings of selfdepreciation, self-hatred, and low self-esteem. How would the stigmatized
person deal with this situation? Mainly, plastic surgery is trying to correct the
defect, the object of the stigma. However even after multiple and complex procedures,
there would still be evidence of an attempt to correct the defect, especially in the
treatment of burn sequelae, as it is difficult or impossible for the plastic surgeon
to erase the scars caused by the trauma1-3. The number of publications on subjective and psychosocial aspects involving people
with burn sequelae is scarce. Thus, it is important to identify and study this problem,
stigma, from a bioethical perspective to protect these individuals.
The Declaration of Bioethics and Human Rights5, agreed upon in 2005, is an important tool for promoting better public health policies,
contributing to the reflection of the imperative need for its defense in the fight
against discrimination and individual stigmatization, and for the strengthening of
investments in health systems, as a goal for the millennium development, and psychosocial
support in all stages of burns.
The declaration provides in article 11th nondiscrimination and non-stigmatization, in which “No individual or group shall
be discriminated against or stigmatized for any reason, which constitutes a violation
of human dignity, human rights and fundamental freedoms.”5. Godoi & Garrafa consider that stigmatization results in inequalities, power asymmetries and social injustices.
Whatever the source of the stigma, the consequences are the same: violation of human
dignity, social isolation and exclusion, reduced access to health services, compromised
life chances, a deterioration in the quality of life and increased risk of death6.
OBJECTIVE
To analyze the principle of non-stigmatization of the Universal Declaration of Bioethics
and Human Rights (UDBDH) to improve the quality of life of people with burn sequelae.
METHODS
This is an integrative literature review comprising six steps. In the first stage,
the question was formulated according to the PICO strategy, which in evidence-based
medicine represents the acronym for “P,” “Patient,” I “Intervention,” “Comparison,”
and “Outcomes,” so, Patient: Person suffering from burn sequelae; Intervention: application
of the principle of non-stigmatization proposed by DUBDH; Comparison: Healthy psychosocial
function; and Outcomes: improvement of quality of life, with the formulation of the
question: How can the application of the principle of non-stigmatization, proposed
by DUBDH, help to improve the quality of life of people with burn sequelae?
In the second stage, a search was conducted in the PubMed and VHL databases (Virtual
Health Library; LILACS, SciELO, PePSIC). Inclusion criteria were studies published
in the last 5 years with the descriptors; in any language; complete and abstracts;
evaluating the year, study site, study type, sample/ population, intervention, control
and outcome. Exclusion criteria: repeated articles; published in sources other than
those mentioned in this article; other diseases and procedures. In the third step,
the selection of articles, according to the flowchart in Figure 1. In the fourth step, the critical analysis of the included studies; in the fifth,
the presentation of the results; and in the sixth, the discussion of these in the
light of the Universal Declaration of Bioethics and Human Rights5 in its article 11th, non-discrimination, and non-stigmatization.
Figure 1 - Research data processing flowchart.
Figure 1 - Research data processing flowchart.
RESULTS
With the descriptors stigma and burn, 77 articles were found published in the PubMed
and VHL databases in the last five years, of which 12 were selected because they met
the inclusion criteria shown in the flowchart (Figure 1). Sixty-five studies were excluded according to the exclusion criteria and due to:
other causes of mental and psychiatric illnesses, such as dementia and Alzheimer’s;
post-traumatic stress from other causes, including among police professionals; stigma
in HIV carriers, obesity, transgender, drug users; and also studies of acute and clinical-surgical
care with an exclusive presentation of scar revision and techniques for treating burn
sequelae in children and an epidemiological study of burns.
Eight articles were found with stigma, burn, and quality of life descriptors. Of these, four were within the inclusion criteria, and the authors Ross
et al.7, Gauffin & Öster8, Müller et al.9, and Berg et al.10 have already been listed and presented in Table 1.
Table 1 - Distribution of articles according to inclusion criteria.
| |
Author/Year/Place |
Kind of study |
Sample/population/intervention/ control |
Result |
| 1 |
Jagnoor et al./2018/ Índia2 |
Identify priority policy and health
system research
issues associated with
recovery outcomes for burn survivors in India.
|
Participants recognized the challenges of burn care and
recovery and identified the need for prolonged rehabilitation.
|
Strengthening health systems can enable providers to address issues such as development/
delivery, protocols, capacity
building, effective coordination, key organizations and referral networks.
|
| 2 |
Ross et al./2021/EUA7 |
Analysis of patient and injury characteristics associated with
social stigma by burn survivors from the
NIDILRR Burn Model Systems.
|
Facial burns and amputations are independent risk factors for social stigma, while
the male
gender and greater community integration were protective.
|
Importance of counseling for patients who suffer facial burns and/amputations; and
investing
in outreach programs for burn survivors to improve social support.
|
| 3 |
Freitas et al./2019/
Brasil13 |
To compare the perception of
stigmatization,
symptoms of depression and self-esteem in
adults in the general
population with burn survivors in Brazil
and verify possible
correlations between these populations.
|
The Brazilian versions of the
BR-PSQ-R, BDI and RSES were applied to 120 general population
and 240 burn survivors. Moderate correlations were found between
the perception of stigmatization and depression and the
perception of stigmatization and self-esteem.
|
Participants in the general population and burn survivors
exhibit similar levels of perceived stigmatization; the general
population had fewer symptoms of depression and higher self-
esteem when compared to burn survivors.
|
| 4 |
Gauffin & Öster/2019/Uppsala, Suécia8 |
To explore the perception of former burn patients about the specific health of the
burn and investigate how these experiences correspond to the subscales of the BSHS-B.
|
Between 2000 and 2007 - 20 respondents with TBSA >20% between 10 and 17 years after
the burn. Despite extensive burns, respondents said they led a nearnormal life. Other
topics after the burn were: skin problems, reduced use of morphine, the importance
of work, stress, mentality and the health system.
|
The BSHS-B alone may not be sufficient to assess the long-term self-perception of
health of former burn patients. The investigation of supplementary areas that reflect
the socio-cultural environment of former patients and personal factors can be of great
importance.
|
| 5 |
Macleod et al./2016/
Nottingham,
Inglaterra14 |
Examine how PTSD and the preoccupation with appearance
associated with burns
are experienced when both difficulties occur.
|
Interpretive phenomenological analysis of 8 women with PTSD symptoms, it was observed
the concern with the appearance and the maintenance of the
threat sensation through the
social stigma acts as a trigger to
relive the traumatic incident that caused the burn.
|
The results suggest that psychosocial interventions
need to be adapted to address processes related to concerns
about change in appearance and traumatic reliving.
|
| 6 |
Barnett et al./2017/Malawi15 |
Record findings from a support group in Malawi and provide qualitative analysis of
content discussed by burn survivors and caregivers
|
Caregivers discussed issues of guilt and self-reproach for their children's injuries;
emotional distance between caregiver and survivor, fears about the patient's probable
death, and concerns about the future and stigma associated with burns
|
Establishment of a support group in the burn unit provided space for burn survivors
and their families to discuss subjective experiences and coping techniques.
|
| 7 |
Berg et al./2017/ Alemanha10 |
To analyze whether patients at different
periods since the burn
differed in psychosocial impairment.
|
Between 2006 and 2012, BSHS-B,
HADS-D, PTSD, IES-R, PSQ and
SCQ were asked about the quality
of life.
|
The results suggest persistence of the psychosocial burden over time after a burn.
Psychosocial
interventions may be indicated even many years after burns.
|
| 8 |
Roberson et al./2020/ Multicêntrico16 |
Multicenter study on tissue banks in low- and middle-income countries. |
Three thousand three hundred forty-six records and 33 reports
from 17 countries were analyzed,
and obstacles to bank creation were found: high capital
costs and operating costs per graft; insufficient training
opportunities; deregistration
of donation and socio-cultural stigma around transplant donation.
|
The availability of skin allografts can be improved by strategic
investments in governance and
regulatory frameworks; international cooperation initiatives; training
programs; standardized protocols, and inclusive public awareness
campaigns; Capacity-building efforts that involve key stakeholders can increase donation
and transplant rates.
|
| 9 |
Freitas et al./2018/
Brasil17 |
Validity of the
Portuguese PSP version developed
in the USA for burn patients.
|
240 adult burn patients admitted to rehabilitation in two burn
units in Brazil. PSQ scores were correlated with BDI, RSE, and
two BSHS-R domains: affect and body image and interpersonal
relationships. Confirmatory Item Factor Analysis (CIFA) was used to test the three
factors (absence
of friendly, confused, and hostile
behavior)
|
PSQ-R scores correlated strongly with depression, self-esteem,
body image, and interpersonal relationships. Total PSQ-R
scores were significantly lower for patients with visible scars.
The PSQ-R showed reliability and validity comparable to the
original version
|
| 10 |
Ren et al./2018/China11 |
Explore and conceptualize the
obstacles encountered in providing mental health care to burn patients.
|
Interview 16 burn patients, five nurses, four rehabilitation the-
rapies, five physicians and eight caregivers about their experiences with current
health services and barriers.
|
Need to focus on the underlying social, economic, and cultural determinants of mental
health care.
|
| 11 |
Müller et al./2016/
Alemanha9 |
Validity of the German version of the PSQ/
SCQ in burn victims.
|
All PSQ/SCQ scales showed good internal consistency. Higher PSQ
means/lower SCQ means were related to less social support,
lower quality of life, and more symptoms of anxiety/depression.
|
A four-factor structure and good validity of the PSQ/SCQ were
evidenced. Further studies should
investigate the application of the
PSQ/SCQ in individuals with appearance differences unrelated to burns.
|
| 12 |
Borges et al./2018/
Brasil12 |
Identify the relationship between spirituality and
religiosity in women's
empowerment burned by self-immolation.
|
Method of “narrative of the disease” with support in women's speeches. |
The burn victim woman showed multiple nuances concerning
self-image and self-esteem. Faith
in religion and spirituality helped in overcoming personal and social conflicts.
|
Table 1 - Distribution of articles according to inclusion criteria.
The search was expanded in reference journals in Brazil, including the Revista Brasileira de Cirurgia Plástica (RBCP) and the Revista Brasileira de Queimaduras. In the last five years, 33 articles were published in the first, and 10 on quality
of life and burns in the second, but they did not present the descriptor stigma and
inclusion criteria.
In the VHL database (SciELO, LILACS and PePSIC), five articles were found with the
descriptors “stigma and burn,” four of which were already included, namely Gauffin
& Öster8, Ren et al.11, Berg et al.10, Müller et al.9, and one by Borges et al.12, who studied the relationship of spirituality and religiosity in the empowerment
of women burned by self-immolation. The results are shown in Table 1.
DISCUSSION
The assessment of non-stigmatization can serve as an indicator of the quality of life
for people with burn sequelae, with the definition of the sequel as a permanent anatomical
or functional change caused by the burn; some authors preferred to name as expatients
and survivors. Considering the definition of health indicators as instruments used
to measure reality, as a guiding parameter, an instrument for management, evaluation
and planning of health actions, to allow changes in the processes and results of the
actions proposed in a strategic planning18.
The authors surveyed in this review used a qualitative methodology to assess stigma
in burn victims, using instruments already validated or with the objective of validation
in their countries. For better understanding, the discussion was divided into the
following topics:
Assessment instruments
The Burn Specific Health Scale-Brief (BSHS-B), used by two studies10,17, is a specific and multidimensional instrument that addresses various aspects of
outcomes and rehabilitation in the treatment of burn victims, with 114 items. It has
three modalities, the Burn Specific
Health Scale-Abbreviated (BSHS-A), consisting of 80 items, and the Burn Specific Health
Scale-Revised (BSHS-R), translated into Portuguese and validated by Ferreira (apud Piccolo19), comprising 31 items and six domains: the ability for simple function, work, treatment,
affection and body image, interpersonal relationships, and sensitivity to heat. However,
this instrument modality did not address hand function and sexuality aspects. It is
the specific instrument most used worldwide for this purpose, it was translated into
Portuguese and adapted and validated for Brazil and called BSHS-B-Br19.
The Perceived Stigmatization Questionnaire (BR-PSQ-R) and the Social Comfort Questionnaire
(SCQ) were developed in the USA to measure the perception of stigmatizing behaviors
directed at individuals with changes in appearance and assess the social comfort of
these individuals. It has shown good validity among people who have suffered burns
and was used by four of the authors surveyed. These publications showed validation
studies by Brazilian and German authors9,10,13,17.
The Beck Depression Inventory (BDI) is a selfadministered instrument composed of 21
items whose objective is to measure the intensity of depression from 13 years old
to old age. The application can be individual or collective. Another scale to assess
depression was the Hospital Anxiety and Depression Scale - Deutsche Version; HADS-D10.
The Rosenberg Self-Esteem Scale (RSES) is widely used in general. Originally in English
by Morris Rosenberg in 1965, it was developed as a global selfesteem assessment scale,
applied to 5,024 individuals, including university students and seniors in New York.
Self-esteem affects many behaviors, with evidence showing associations between low
self-esteem and negative mood, perception of disability, delinquency, depression,
social anxiety, eating disorders and suicidal ideation and the association between
high self-esteem and mental health, social skills and well-being17.
The post-traumatic stress and appearance distress (PTSD) scale assesses living with
a traumatic stressor, such as a burn. It was used in two studies10,14 to assess burn
victims. Another instrument used was the Impact of Event Scale. The Impact of Event
Scale (IES) assesses subjective stress related to life events, not focusing on a specific
situation but on the particular characteristics that involve such events. It is composed
of only 15 items, configured as a four-point Likert scale, self-administered, fast
and low-cost with good psychometric parameters, with the possibility of use in clinical
practice and research, and the social support assessment scale. The social support
assessment scale assesses the influence of social interactions on people’s well-being
and health; being important for understanding how the lack or precariousness of social
support could increase vulnerability to diseases and how to support social protection
would protect individuals from damage to physical and mental health resulting from
stressful situations20,21.
Social stigma and psychosocial impairment
In the interview conducted by Ren et al.11 with 16 burn patients, five nurses, four rehabilitation therapists, five physicians
and eight caregivers about their experiences with current health services and barriers,
it was identified that beliefs, knowledge, socioeconomic status, cultural understanding
of people’s mental health and social stigma appear to play important roles in the
public health approach to health promotion and post-burn psychosocial interventions.
Freitas et al.13,17 compared the perception of stigmatization, symptoms of depression and self-esteem
in adults from the general population with burn survivors in Brazil, verified the
possible correlations between these populations, and extended the validation of the
PSQ questionnaire to the Brazilian reality.
Corroborating the authors’ findings mentioned above, the study by Ross et al.7 considered facial burns and amputations as independent risk factors for experiencing
social stigma. Berg et al.10 highlighted that the research results regarding the different periods since the burn
did not differ concerning psychosocial impairment, verifying that they suggest the
persistence of the psychosocial burden related to the sequelae of burns over time.
It is also worth mentioning that there were no significant differences in psychosocial
suffering regarding sociodemographic and burn-specific variables; 18 (12.4%) patients
had a cutoff point >11 for anxiety and 22 (15.2%) for depression; 16 (11.1%) patients
screened positive for post-traumatic stress disorder (PTSD). No difference was found
for current (drug) psychotherapy and desire for psychotherapy.6
As explained by all the authors of this review, psychological disorders were prevalent
and psychosocial interventions can be indicated even after many years in people with
burns; however, psychological services are rarely accessible for post-burn injuries,
as reported by Ren et al.11 and Barnett et al.15, in which burn survivors discussed frustration with long courses of hospitalization,
hope created through interactions with hospital staff, the association between mental
and physical health, about their injuries and how it would affect their future, decreased
self-worth, increased focus on their own mortality and family, and interpersonal difficulties.
Borges et al.12 proposed a narrative study to identify the relationship between spirituality and
religiosity in women’s empowerment burned by self-immolation. They observed that women
with hypertrophic scars presented different reactions and, with their speeches, the
categories of religion emerged as the high point of salvation, stigmatization and
the victim’s response to society’s rejection, non-acceptance of the new body image,
self-rejection, self-prejudice and spirituality in the process of empowerment of burned
women.
The study by Jagnoor et al.2 revealed that participants, healthcare providers, burn survivors, caregivers, neighbors/community,
non-governmental organizations involved in rehabilitation, legal assistance, workplaces
and key health personnel in implementing service recognized the challenges of burn
care and recovery and identified the need for prolonged rehabilitation.
Challenges identified included poor communication between health providers and survivors,
limited rehabilitation services, difficulties with transportation to the health facility,
and high costs associated with treating burns. Both burn survivors and healthcare
professionals identified the stigma associated with burns as the greatest challenge
within the healthcare system and the community. System barriers (e.g., limited infrastructure
and human resources), lack of economic and social support and poor understanding of
recovery and rehabilitation have been identified as the main barriers to recovery2.
Analysis of the principle of non-discrimination and non-stigmatization of the UDBDH
in improving the quality of life of people with burn sequelae
In today’s society, the term stigma expresses something bad, something that should
be avoided, and that expresses a deteriorated identity1, which results from the production and mimesis of unequal power relations; it is
conservative, feeding the unjust social order and disrespecting different identities,
while human dignity concerns the fact that dignity is an intrinsic attribute of the
human person and, consequently, is inalienable, inalienable and unavailable5.
Discrimination is any distinction, exclusion or restriction of preference based, among
other things, on physical disability or other characteristics not relevant to the
matter at hand. In this review, no instruments were applied to assess discrimination,
which was described by the researchers indirectly through the perception of stigmatization.
Other instruments, such as the Experiences of Discrimination (EOD)22, could be applied to this population in future studies.
Whether individual or in groups, the process of identity construction is a social
construction linked to intersubjectivity1; that is, human dignity presupposes respect for the other, human plurality and diversity.
Through the human condition, we are equal, but at the same time, we are singular,
but these differences cannot cause inequalities and discrimination23.
Because of what was exposed by the authors of this integrative review, at this stage,
we sought to analyze, in the light of bioethics, how the DUBDH document in article
11th of the principle of nondiscrimination and non-stigmatization can contribute to improving
the quality of life of people with sequelae of burns.
This document was validated by the United Nations Educational, Scientific and Cultural
Organization (UNESCO) after ratifying the Universal Declaration on Bioethics and Human
Rights in 2005 (UDBDH)5. Its foundation is justice, recognition of the dignity of the human person, respect
for human rights and fundamental freedoms. From article 11th of the declaration, any discriminatory or stigmatizing act that causes inferiority
to the individual and the withdrawal of his dignity becomes unacceptable, thus reiterating
the need to seek tools for coping for people in these conditions.
Following the line of non-stigmatization and measures for coping and changes, this
research listed authors Jagnoor et al.2, Ren et al.11 and Roberson et al.16, among others. Ren et al.11 observed that participants recognized the challenges of burn care and recovery with
the need for prolonged rehabilitation. Challenges identified included poor communication
between health providers and survivors, limited rehabilitation services, difficulties
with transportation to the health facility, and high costs associated with treating
burns.
Both burn survivors and healthcare professionals identified the stigma associated
with burns as the greatest challenge within the healthcare system and the community.
System barriers (e.g., limited infrastructure and human resources), lack of economic
and social support, and poor understanding of recovery and rehabilitation have been
identified as major obstacles to recovery2.
Roberson et al.16, based on the experience that wound excision and temporary coverage with a biological
dressing, such as an allograft, can improve the survival of patients with major burns,
carried out a study evaluating the health systems in low- and middleincome countries
(LMICs), which rarely have access to allografts. This fact may contribute to the limited
survival of patients with major burns at these sites.
A study was carried out on the implementation and maintenance of tissue banks in LMICs
to guide the planning and organization of the system. The survey consisted of 3346
records, with 33 reports from 17 countries. Commonly reported barriers to implementation,
ideal or planned, include high capital costs and operating costs per graft, insufficient
training opportunities, donation schemes, and socio-cultural stigma around donation
and transplantation. It was highlighted that the availability of skin allografts could
be improved through strategic investments in governance and regulatory frameworks,
international cooperation initiatives, training programs, standardized protocols,
capacity building and inclusive public awareness campaigns16.
Furthermore, Ross et al.7 highlighted the importance of counseling for patients who suffer facial burns and/or
amputations; and the need to invest in outreach programs for burn survivors to improve
social support.
CONCLUSION
The results obtained in this integrative review about stigma in patients with burn
sequelae presented instruments for assessing stigma, stress, self-esteem and assessment
of social support. Intrinsic and extrinsic factors related to stigmatization were
identified, and considerations were presented on the principle of nondiscrimination
and non-stigmatization of UDBHR as proposed by the authors, who highlighted actions
that can improve social support and the quality of life of people with sequelae of
burns.
This study brought to reflections the human singularity, that is, how the quality
of being unique, distinct from others, important in the formation of the self, is
established in the social relationship with other beings, through alterity, the look
of the other and for the other, allowing us to see and perceive the other and ourselves.
The reduction of individuality derived from stigmatization can reach the limit of
dehumanizing the stigmatized person and discriminating against him/her to the point
that the individual’s identity is determined by the stigma itself or is confused with
it, increasing the vulnerability of individuals and groups23.
In the specific case of patients with burn sequelae, the Declaration is extremely
valuable because it includes social, psychological, and economic issues involved in
the genesis of the injury in the bioethical agenda. Through DUBDH, we will promote
reflections on empowerment and, consequently, awareness of the need for social participation
of individuals affected by burns, thus ratifying the patient’s autonomy.
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1. Universidade de Brasília, Brasília, DF, Brazil
2. Sociedade Brasileira de Cirurgia Plástica, São Paulo, SP, Brazil
Corresponding author: Katia Torres Batista Asa Norte, Brasília, DF, Brazil, Zip Code: 70910-900, E-mail: katiatb@terra.com.br
Article received: May 13, 2021.
Article accepted: July 14, 2021.
Conflicts of interest: none.
