ORIGINAL RESEARCH

Body image in paraplegics: coping with changes from the perspective of people with spinal cord injury

Wiliam César Alves Machado^I; Adriana Bispo Alvarez ^II; Maria Luiza de Oliveira Teixeira^III; Elen Martins da Silva Castelo Branco^IV; Nébia Maria Almeida de Figueiredo^V; Raquel Silva de Paiva ^VI

^I Nurse. Professor at the Graduate Program on Health and Technology in the Hospital Space. University of the State of Rio de Janeiro. Brazil. Email: wilmachado@uol.com.br
^II Nurse. Assistant Professor at the Nursing and Obstetrics Course. Federal University of Rio de Janeiro. Macaé. Rio de Janeiro. Brazil. Email: bispo.alvarez@gmail.com
^III Nurse. Professor at the Graduate Nursing Program. Federal University of Rio de Janeiro. Brazil. Email: mlot@uol.com.br
^IV Nurse. Adjunct Professor at the Anna Nery School of Nursing/UFRJ. Federal University of Rio de Janeiro. Brazil. Email: elencastelobranco@yahoo.com.br
^V Nurse. Professor at the Graduate Nursing and Biosciences Program. University of the State of Rio de Janeiro. Brazil. Email: nebia@unirio.br
^VI Nurse. Assistant Professor at the Nursing and Obstetrics Course of the Federal University of Rio de Janeiro. Macaé, Rio de Janeiro. Brazil. Email: paiva.raquels@gmail.com
^VII Article drawn from the dissertation << Knowledge and practices of paraplegic customers and their caregivers about pressure ulcer: Implications for educational nursing care >> presented to the Graduate Nursing Program. Ana Nery Nursing School. Federal University of Rio de Janeiro. Brazil. 2012.

DOI: http://dx.doi.org/10.12957/reuerj.2016.16125

ABSTRACT

Objective: to identify how people with disabilities acquired after spinal cord injury react to perceived changes in their body image. Method: this exploratory, descriptive, qualitative, convergent-care study was conducted in the second half of 2011, with seven paraplegics with spinal cord injury, at the San Francisco de Assis Teaching Hospital and at the Paraplegic Home, in Rio de Janeiro City, Brazil. A semi-structured script was applied with thematic analysis. The research ethics committee approved the project (opinion 047/2011). Results: paraplegics' reactions vary with on their emotional maturity, level of understanding and acceptance of the new condition, functional dependency and autonomy, and attachment to prior body image. Conclusion: it was concluded that they tend initially to display negative reactions typical of coping with the new condition of functional dependence, such as difficulties in overcoming limitations in performing self-care and in detaching from their former body image, and progress through their own experiences with long-term care.

Keywords: Disabled persons; spinal cord injuries; body image; nursing care.

INTRODUCTION

Accepting a new human condition is a challenge for people in general and this is even more challenging when a substantial change in the image ^VII passed to others is implied^1,2. The confrontation is significant when changes redound in impaired body image, loss of sensation, mobility, and especially when they generate functional dependence for the basic needs of everyday life.

The appearance of spinal cord injury is usually abrupt, resulting from fractures, dislocations or injuries in the spinal cord. This organ is responsible for the regulation of respiratory, circulatory, excretory, sexual and thermal functions. It is also the conductive via of afferent and efferent motor and sensory stimuli between the periphery and the brain ³. For these reasons, it is assumed that people suffering from this type of injury require more assistance and nursing care in the long term.

The main causes of spinal cord injury are wounds by firearms, falls and automobile and diving accidents^3,4. This aggression results in section or partial or complete disruption of the nerve bundles of the spinal cord, resulting in losses of sensory, motor and sexual functions, lack of bladder and bowel sphincter control, and potential complications in the respiratory, thermal and circulatory functions, spasticity and pain ⁵. Based on these, we sought to identify the reactions of people with physical disabilities acquired after spinal cord injury to coping with changes in body image that result from the new condition and/or physical performance.

LITERATURE REVIEW

In this study, coping with paraplegia is considered a process that occurs in the interaction of people with their environment, family and community. In this sense, an individual can adopt different strategies in new situations and under unique needs that depend on individual resources, family support, environmental support and the available network of services.

Research on body image began in the early twentieth century, focusing on the discovery of what a given injury entailed to the perception of the own body or of the space that surrounded the individual. Over time, the concept of body image has undergone some modifications and new methods to investigate it appeared, creating a broad evaluation and conceptual repertoire used in the XXI century⁶.

Conceptually, body image is the figure of our own body that we form in our mind, that is, the way in which we see our own body⁷. In the context of this study, the body is much more involved in the emotions it produces. Emotions are a initial communication system and they translate breaks and links with the human and physical contexts. Sensitivities, sensorialities, motor skills and sensuality mingle constantly. Emotions, with their psychophysical and body processions, represent privileged body languages, perhaps even primitive, but always present in each one of us ⁸.

The relationship that one has with the own body is a constituent and essential element of individuality. The rupture of this element by a disease has a special meaning in the case of functional limitations resulting from neurological sequelae⁹, taking into account the social and individual symbolisms of the standard image of females in society. The biological body can only be perceived through its representatives that constitute it, which is called psychological body.

In this line, the substrate formed by the anatomical body is what builds up the body image, which is commonly referred to when a person talks about the own body. As the organic body is the foundation of the body image, when there are relevant biological changes such as in the case of a mutilating surgery, this change will cause effects on the body image¹⁰.

A survey in Capes database of theses with the exact expression body image reveals an output of 256 theses between the years 1992 and 2007, among which 126 were produced between 2004 and 2007.

Among the 256 theses/dissertations, only three studies had set out to investigate the perception of body image: one work carried out in the year 2000 that used the drawing of the human figure as tool, and two works in 2006 that used silhouettes scales. None of these instruments is appropriate for assessing the perceptual dimension of body image. This shows the scientific fragility of perceptual research, both in its importance and in its assumptions in Brazil⁶.

METHODOLOGY

Descriptive and exploratory study with qualitative approach carried out with paraplegic customers in the city of Rio de Janeiro. The setting of the study was composed of two institutions that provide care for paraplegic patients with spinal cord injury, namely: the Rehabilitation Unit of the Teaching Hospital São Francisco de Assis (HESFA) as teaching-care academic unit, which includes the Hospital Complex UFRJ (CHUFRJ); and the Support Center for Physically Disabled People (CAIF) of the Paraplegic Club of Rio de Janeiro, which is the home to twenty-six people with various types of disabilities, including, paraplegic patients.

The subjects of the study are seven paraplegic patients with historical consequences of spinal cord injury distributed into six men and one woman.

The inclusion criteria were paraplegics clients with spinal cord injury and older than 18 years, enrolled in the Rehabilitation care of the HESFA or residents of the Paraplegic Club, who signed the Informed Consent.

Data collection occurred in the second half of 2011 through semi-structured interviews, which were recorded, transcribed and analyzed according to the assumptions of the content analysis¹¹.

The procedure analysis of findings included the transcription of data followed by categorization based on thematic content analysis, which was divided into three phases: pre-analysis, material exploration, treatment of results and interpretation.

The study complied with the Resolution nº 466/2012 of the National Health Council/MH¹² that regulates the Norms for Research involving Human Beings. The project was submitted to the Ethics Committee of the Anna Nery Nursing School - UFRJ and was approved under Protocol nº 047/2011. The subjects were identified by I corresponding to the interview, and subsequent numbers referring to the order of the interviews which were carried out randomly.

RESULTS AND DISCUSSION

Reports of participants showed two categories that reveal how paraplegic people react to their new physical body condition imposed by the spinal cord injury, showing symmetries and asymmetries, proper of the human uniqueness. Such categories, described below, are:Changes in body dynamics and Living with the new body image.

Changes in body dynamics

Participants react in similar ways soon after the injury, mostly tending to the perception of failure, disappointment and frustration. Some feel the fact of becoming dependent on others for basic care on a daily basis.

My life has changed a lot [...] periods of sadness, not knowing what really happened. (I1) My life has changed completely. In all senses [...]. It is very difficult; you only know when you are in this state, to see the differences. God has given me a lot of strength. (I2) In the first days, it was tough. When I sat in a chair and saw everyone walking, I felt much sadness. (I5) At first it was difficult. This was very complicated [...] God gave me strength, despite the stroke I had. (I7)

The reports of coping with the changes has similar characteristics to the discoursed in literature^13-15, revealing conflicting emotional experiences that often culminate in the belief in God, as reported by I1, I2 and I5, and resignation, as reported by I7.

For years, the concern with issues related to impairment of body image has directed research towards the female audience, given that, until a few years ago, there was a consensus that the body image disorder was a phenomenon associated almost exclusively to this specific audience ¹⁶. Although discreet regarding manifestations of impacts caused by the changes in body image, male participants also expressed dissatisfaction with their current conditions.

Life has been terrible. Bad in every way. [...] I'm not a woman anymore, I'm not a housewife anymore. [...] I cannot sweep, cannot flush the toilet, [...] I always liked cleaning. (I3)

As can be seen in the speech of I3, body image is a single and indivisible structure. It allows the individual to recognize the self at all times, and also to express rejection of the condition imposed by the disability. It is the mental image of the body identity with regard to experiences, which bring to the subject at all times, new and different sensations and perceptions¹⁷. Social, emotional and physiological aspects are interrelated and define if the paraplegic person will reject or accept the reality.

In physical rehabilitation, nursing care has as main objectives to assist the customer in functional and intellectual independence, respecting his limitations, promoting self-care through guidance and training for everyday situations, preparing the physically disabled person to social and family life in the best way possible, with quality and dignity^3,18,19.

The reports of respondents confirm that our body is our first and greatest mystery. To be truly present in the world, we must recognize that we are one body in a multitude of complex processes that make us rich in its consciousness and unconsciousness, confusing and pragmatic, and in its attitudes, which are always bodily²⁰.

The body image involves three components: the perceptual, which relates to accuracy of perception of the own physical appearance, involving an estimation of body size and weight; the subjective, involving aspects such as satisfaction with the appearance, the level of concern and anxiety associated with it; and behavioral, which focuses on situations avoided by the individual due to the experience of discomfort associated with body appearance⁷.

Coping with functional dependence for basic care needs, mobility and routines of daily activities is very difficult for adults who have suffered spinal cord injury, as can be seen in the following reports.

Sitting for hours and hours is hard, especially in the initial phase. It's a brainwashing. Everyday, all the time. (I1) My whole problem is the crap of these legs that do not work. [...] To be able to pass from one chair to another without depending on others will be the greatest joy. [...] I developed kidney disease, the worst is that you cannot walk. In hemodialysis, I'm the only one who does not walk. (I3) What hurts the most is to move, to work, I have children too, so. (I4)

The finding that the segments of their body no longer respond to stimuli generates an overwhelming sense of failure, depression, comparisons, among other frustrating reactions due to the loss of sensitivity, control of sphincters and the progressive loss of muscle mass¹⁵. Static posture imposed by the seated position in the wheelchair also frightens those who previously could get up and walk freely.

It is observed in the speech of I3 that, for women, a compromised body image is negatively faced, and even with more difficulty. This is because gender has been recognized as a decisive factor in the development and enhancement of body image^21,22. In this respect, it is generally predictable and even understandable that women with acquired disabilities, more than men, tend to show restless, concern and dissatisfaction with the body and the image that it passes to others.

Coping with a new body image, often antagonistic to the desired, is something that causes people with spinal cord injury, particularly the subjects of the present study, find great difficulties to accept their condition, to live in mental, emotional and existential balance. This can be observed in the following speeches:

I did not take long to accept it, no. Now, when I need, I pick up the car, I go to the mall. I love shopping. (I5) What happened was that I stopped walking, and I have been through thirty-two operations, and now, as if it were not enough, I had to amputate both legs. (I6)

Such reports confirm that the definition of the new image by the individual will depend on his experience. In this sense, the manner how the individual will react to the altered body image will depend on coping strategies ²³, on the nature of the change, on the importance of the new image for the future and the types and possibilities of support that the paraplegic person receives until the person adapts to the new image ²⁴.

The person cannot get depressed, otherwise will neglect the own body. It's like a slow suicide. One thinks that life is over, the reason for living was to walk, and then starts to neglect the body. (I1) I seek always to face the problem with my head up [...] I need to face it. If I want to run away, I'm only gonna get more troubles to myself because I'll fall into depression. (I2) Then I put my hands on my face and ask Him, God why? What did I do, my God, to deserve this punishment? Why, my God, I took good care of my family. (I3)

Considering another understanding that alternates courage and pessimism, the reports of I1, I2 and I3 confirm that difficulties of coping with changes in body image affect both men and women, although studies focusing on the female gender predominate in the literature.

The experiences lived by the individual will determine his new image, depending on the way that this individual will react to the new body image. This aspect depends on coping strategies, the nature of the change, the importance of the new condition for his future and the support the person receives to fit the new image, as already mentioned²⁴.

Living with the new body image

Living with relatives, who are often the caregivers of paraplegic people in their homes, is presented herein in harmonious, collaborative, participative and fraternal way, but sometimes confrontational, exhausting and aggressive depending on the willingness of relatives to provide care and support to these people. In the present study, it is clear that interactions with family members are no exception to this rule and are characterized by the described below.

Well, with time, I saw it was an irreversible injury [...] I had great support from friends and family. (I1) My family helps me a lot, so it hurts this part of moving around, working, I have children too, so [...]. What affects the most is this. (I4) I could not walk in the walker anymore, because I've tried a few times, my mother helped me, but I cannot stand by myself [...] after the stroke I cannot do the same. (I7)

As spinal cord injury results in significant functional dependency when it comes to self-care, very often family members, friends and caregivers play an important role in the life of the paraplegic person. It is important that the coexistence be as harmonious as possible, as observed in the reports of I1 , I4 and I7 .

These reports support this line of thought and it is the responsibility of nursing professionals working in the area of rehabilitation to provide care for this need, in the sense of showing these people that the idea of "unattractive" is the product of their minds and that they are able to develop skills for self-care and independence.

My marriage ended long ago, two years ago he left. He has no patience with me. Yesterday we had a bad argument. Because I called to his cell phone, he was already on the street, I said: I want to evacuate. I want you one hour here. (I3)

In contrast, the report of I3 presents another way to react to vulnerable situations, when the person no longer feels attractive to the partner, does not put the self in the other's place and starts to make conflicting demands that jeopardize the relationship/bonding that is essential to long-term care.

Regarding the care of the own body and specific needs of people with spinal cord injury, the reports revealed emphasis on daily baths, others spoke about how they perform maneuvers to stimulate evacuation, how they proceed with bladder catheterizations, due to loss of sphincter function. The most embarrassing element is the possible need to use diapers as a way to prepare for unforeseen situations of elimination of feces or urine while in public environment, as illustrated by the following speeches.

I shower once a day [...] I make my needs in the morning, I massage the belly to fill the rectum, then with glove, I myself make the touch and I empty the rectum, and urine, I empty the bladder five times during the day, 4 in 4 hours, brush the teeth, wash my face, comb my hair, normal. (I2)

The report of I2 reiterates that, in addition to sensory and motor damage, spinal cord injury also leads to changes in urinary and fecal eliminations due to loss of bladder and anal sphincter control with consequent change in the pattern of these eliminations²⁵. The inability to control the bladder sphincter brings various problems for the patient. These include social denial, limitation to the rehabilitation program and clinical complications such as urinary tract infections, bladder lithiasis and hydronephrosis^14,26.

Dependence on help for basic and essential care was observed in some participants of the present study, while others were more able to run basic care autonomously, and in this last case, this was a reason for expressive satisfaction. In this sense, autonomy represents a form of personal freedom based on the right to take care of oneself, especially by avoiding interference of others in situations involving the violation/invasion of privacy and physical intimacy, the risk of exposing internal odors, secretions, and the need to share the most fragile part of the human condition^13-25.

Who takes care of me is my husband and my son. They put the diaper on me, pass me from the chair, when I am in the hygienic chair, I am all dried up, coiffed, I put my makeup, go out dressed up, they put me here in the room and pass me to the wheelchair [...] I do not take care of myself anymore. Because of pain, sometimes when I'm better, I still color my hair, I'm not taking care of my teeth because I get upset because I brush my teeth once a day, because I have no one to help me to do it, he has to go out, I can not cut my nails, I can't reach my foot [...]. The only thing I do, and I never let to do, it is to take my shower. (I3)

In the current Brazilian society, not being beautiful can be a serious failure, leading to loss of self-esteem and insecurity, as evidenced in the speech of I3. The dependence of self-esteem on appearance in the case of women makes them vulnerable to negative body image and its negative effects ²⁷.

The psychological distress experienced by women who experiences mutilation, as reported by I3, may vary over time with the individual experience and capacity to perceive herself embodied in a new body. New insights replace the old ones, but this renewal concerns only the content of our experience and not its structure^10,28.

In the case of I3, the denial of the body image and strong attachment to past memories prevent emotions to be renewed and replaced by others more consistent with the current performance.

I learned to take care of myself with my sister, my brother [...], because at first I did not care much [...], my siblings always take care. [...] I ended up learning from them. They wouldn't leave me alone! (I4) I take care of myself very well, very well. [...] I wake up early every day four in the morning, especially in summer, my legs are swollen, I put the legs up, to lie, to rest a little. (I5)

It is important to note that rehabilitation is part of nursing care as a assistance model, and also as a specialty. Rehabilitation efforts should start at the initial contact with the patient. Rehabilitation principles are basic to care, even in the absence of physical disabilities and their consequent incapacitation. The care model of rehabilitation, essentially preventive, educational and addressing the binomial patient/family caregiver must be considered¹⁹.

CONCLUSION

It is concluded that people with spinal cord injury tend initially to present typical negative reactions of facing the new condition of functional dependence. These include difficulties to overcome the limitations to perform self-care and to detach from the previous body image, progressing through their own experiences with the long-term care.

As potential users of health and rehabilitation services in the community, these people require long term care, whether in institutional settings or in communities and households. Long term care include care with the body, skin, mucous membranes, as well as guidance on eliminations, maneuvers and techniques compatible with the vesico-intestinal reeducation process, which is a knowledge absolutely covered by fundamental nursing and nursing and rehabilitation. Valuing potential to overcome the body's functional losses greatly assists in the success of care and nursing assistance. It is the responsibility of the rehabilitation team, including the rehabilitation nurses, to invest in the inclusion of people in society, showing the possibilities of living with fullness, in work, health, leisure, despite the functional limitations arising from the acquired neurological injury.

The limitations of the study are related to the access to health services, as some institutions do not allow the realization of studies.

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