Introduction

A spinal cord injury (SCI) is damage to the spinal cord that affects movement, sensation, or autonomic function below the level of the injury [1]. According to the World Health Organization (WHO), between 250,000 and 500,000 people worldwide suffer spinal cord injuries each year. The annual global incidence is estimated to be between 40 and 80 cases per million people [2], although this varies among different countries. In the United States (US) the prevalence is 30–40 cases per one million people, with an incidence of 10,000 new cases per year [3]. In other countries it varies from 10.4 per million people per year in the Netherlands, to 30 per million people in Australia and 50 per million in Japan [3]. In Spain, the annual incidence of SCI is around 23.5 per million people, with ≈1200 new cases reported each year [4].

People with a SCI are two to five times more likely to die prematurely. In addition, suffering from a SCI is associated with lower rates of schooling and economic participation, associated with significant costs faced by both the person suffering the injury and society [2]. A SCI causes significant permanent and disabling consequences at the physical, family, social, ethical, emotional, and economic levels [5,6,7,8,9]. On a physical level, people experience a lack of sphincter control, alterations in genital function, a greater risk of infection, changes in the ability to move around in the environment (due to the use of a wheelchair), or difficulties carrying out daily activities (ADL) [1, 5, 6, 8, 10]. This may increase the risk of dependency and alter the pre-injury lifestyle [5, 6, 8, 9, 11]. These changes are the consequences that are most difficult to face because of their negative impact on personal image, self-esteem, and daily life [12,13,14]. Bladder and bowel incontinence are also the most difficult physical consequences to deal with after a SCI [5, 8, 9].

Body image is a complex concept that includes cognitive, perceptive, affective, and behavioral aspects, furthermore, changes in body image can be perceived positively or negatively according to the body ideals that each person has internalized in their culture [12]. In addition, the body ideal is associated with perceptions of greater social desirability, happiness, or social status [12]. Therefore, the bodily changes associated with spinal cord injury can produce feelings of inferiority in those affected by not being able to achieve the culturally established body ideal [13].

There is a positive association between time since the acquired SCI, coping with physical changes [5, 8, 9], and acceptance of the new body image [5, 8, 9]. Furthermore, the incorporation of the wheelchair into the body schema is considered essential for this reconstruction of the body image [15].

A number of studies have researched the influence of the bodily changes after SCI on self-concept. Thus, having a physical disability is known to negatively affect self-esteem and satisfaction with one’s own body due to its possible psychological repercussions and the negative internalization of social attitudes towards physical differences [5, 8, 9, 16].

Conversely, few studies have examined the perceptions of people with SCI regarding their body changes. Moreover, although several studies qualitatively analyze perceptions of body changes after acquired SCI [5, 8, 9, 12,13,14, 17,18,19,20], little is known about the influence of possible factors such as age, gender, personality, or the health system on the perceptions of people with different spinal cord injury levels on body changes in Spain.

Aim

To explore perceived bodily changes in people with acquired spinal cord injury of both genders and with different levels of injury.

Methods

A qualitative study designed and analyzed from the perspective of Grounded Theory [21]. This inductive method was chosen to provide a theoretical explanation to help us to understand the perceived bodily changes of people with acquired SCI.

Data were collected via semi-structured interviews among people with acquired SCI. Semi-structured interviews are a widely used data collection strategy in qualitative research and are commonly used in practice-close research for providing us with a very rich description of the participants’ perspectives on a phenomenon [22]. This technique was selected to explore perceived bodily changes in people with acquired spinal cord injury for allowing to know the unique perspective of people with SCI on this phenomenon [23]. Participants were selected using triangulated sampling, which combined theoretical and snowball sampling, until data saturation was achieved (32 participants). To ensure maximal variability in the discourses, the sample included people with SCI of different gender, age, sociodemographic characteristics, level of injury, and years of evolution since the injury. All participants had been admitted to the National Paraplegic Hospital in Toledo, Spain, a national reference center for spinal cord injury. Table 1 describes the main characteristics of the participants.

Table 1 Main characteristics of the participants in the interviews.
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The semi-structured interviews were conducted at the National Paraplegic Hospital by the principal investigator (MVF), in a quiet, comfortable, and private location, with a script of topics that could be openly discussed during the interviews (Table 2). The interviews lasted on average between 50 and 90 min and were audio-recorded after obtaining the participants’ informed consent and subsequently transcribed verbatim. Three experts in qualitative methodology from different disciplines (Physical Therapy, Nursing, and Anthropology) independently carried out the analysis of the transcripts, subsequently agreeing on the results. The collection, analysis, and interpretation of the data were carried out simultaneously via an interactive process.

Table 2 Theme guide for interviews.
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Following the principles of Grounded Theory, during data analysis, the concepts that explained participants’ perceptions of body changes after a spinal cord injury were identified. The concepts were classified and ordered into categories based on the processes of open, axial, and selective coding, and the codes and categories were agreed upon. The open coding enabled the identification and grouping of the concepts into categories. During axial coding, categories and subcategories were related, while selective coding enabled the integration of all categories, subcategories and codes into a central theory that explained the perceptions of body changes in people with acquired SCI. According to this approach, theory is understood as the set of well-developed and interrelated concepts with their verbalizations, which form an integrated framework that explains the analyzed phenomenon [24].

To ensure the validity and reliability of the conclusions of the analysis, verification strategies were used, which included methodological coherence, investigator responsiveness, sampling adequacy, saturation of information, the verbatim transcription of the interviews, the return of the transcripts to the participants for validation, the analysis of the data in the context where they emerged, the use of the constant comparative method and triangulation. Triangulation of researchers and data was performed by conducting in-depth interviews with a sample of people with SCI from different regions, age, sex, level of injury, and socio-demographic characteristics.

Results

Two main categories emerged from the data analysis to explain the perceptions of people with SCI regarding post injury body changes: changes in body schema (bodily alienation and normalization of the body) and increased body awareness (an uncontrollable body and reeducating the body) (Fig. 1 and Table 3).

Fig. 1
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Coding diagram.

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Table 3 Main quotations.
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Changes in body schema

Participants perceived a new body schema after SCI, with two subcategories, body alienation, and body normalization.

Bodily alienation

People with SCI perceived foreignness of their own body after the injury, not recognizing it as their own and requiring time to become familiar with their new body. This estrangement of the body encompassed the following codes:

Fragmented body

The participants consistently described their bodies after the injury as fragmented or broken. Thus, people with complete SCI (AIS A) perceived their body to be divided between the areas above and below the lesion, especially in the early stages. In addition, they reported the existence of a “borderline” between the preserved and “lost” areas. This resulted in the loss of bodily integrity and the separation of body and mind. Moreover, the younger participants perceived their bodies as an obstacle for fulfilling what their mind commanded, a body with limitations typical of old age, that did not correspond to their age and did not allow them to pursue their prior active lifestyle, forcing them to redefine their life plans.

In addition, the language used in the discourses revealed a tendency to objectify the person with SCI, conceiving themselves as “broken” men and women.

Initially, after the injury, the participants considered their body as a prison or a shackle from which they were only free in dreams. Many participants reported seeing themselves in dreams as they were before the injury or unconsciously trying to get out of their bed/chair, forgetting their physical limitations.

A blurred body

The sensitivity alterations caused the participants to perceive their body as something imprecise, hazy, without defined limits or contours. Also, they had difficulty perceiving the positioning of their body parts, causing posture monitoring reactions, for example, constantly looking at their feet when sitting in the wheelchair.

The body as a burden

After the injury, participants were more aware of the weight of the part of their body affected by limited mobility, describing their body as “heavy”, “slow”, or a significant burden that had to be “ dragged along”.

Non-muscular body

The negative perception that participants had of their bodies becoming thinner due to muscle atrophy secondary to spinal cord injury was noteworthy. Muscle mass was one of the physical changes that most negatively affected their appearance, especially in people who previously had a very muscular body due to sports practice.

Atrophy of the lower limbs caused greater displeasure in men. Both men and women highlighted other physical changes such as abdominal distension derived from the loss of voluntary abdominal contraction or the presence of flattened hands due to atrophy of the intrinsic muscles, which was perceived as a sign of recognition and identity, common in people with cervical lesions.

The wheelchair as an extension of the body

The wheelchair was considered by the participants as an essential part of their new body schema after the spinal cord injury. Some participants described an initial rejection towards the wheelchair, considering that it increased the visibility of their limitations and disability, expressing the sorrow of having to depend on it all their lives, seeing themselves in mirrors, seeing the chair everywhere, and being engulfed by its presence. In addition, they described needing time and undergoing a mental process of adaptation in order to see the chair as a facilitator of their recovery and an essential means of functioning in the world. During this process, participants appreciated the sensitivity of the hospital professionals the first few times they used the wheelchair.

All participants who needed a wheelchair saw it as an extension of their body and a means of getting around and relating to the outside world. Thus, aspects such as choosing the model or sprucing up the wheelchair became especially important for the participants, with the wheelchair being treated as another part of their body that came to merge with their identity.

Most of the participants acknowledged that their change in height due to the wheelchair, (being at “child’s height”), changed their way of perceiving the world, interacting with their environment, and limited their social relations, considering that functioning with a wheelchair was something that was learned.

Body normalization

After the SCI, there was a process of normalization of the body that included being able to adapt to changes and a number of coping facilitators.

Adapting to changes after the SCI

The severity of the SCI was not considered proportional to the negative feelings about the body changes. Thus, participants with more mild lesions expressed more anger and grief at the bodily changes than others with more severe consequences. Although the consequences of the injury conditioned the bodily perception and the ability to cope with the injury, they were not the determining factor, with personal temperament and the passage of time being perceived as more relevant. In addition, people with milder injuries considered that their recovery process was longer and suffered poorer acceptance of the body changes, with the appearance of a phase of apathy being common when the expected results were not achieved, whereas participants with severe injuries were more accepting of bodily changes.

Participants stated that the body changes and life experiences changed their views, including their concept of beauty.

Coping facilitators

The participants agreed that the passage of time since the SCI helped them to accept its consequences and “normalize” their bodies, a process that began when they became aware of the consequences of the injury. In this sense, the fact that at least 2 years had passed since the injury helped them to cope.

In addition, physical recovery, functional gains, achievement of goals and objectives positively influenced their body image and the normalization of their bodies.

Although most participants would have preferred to acquire the injury at an older age, they felt that young people were better able to adapt to the changes following the injury, with older people having more difficulty finding resources to live with the injury and get on with their bodies.

Having had a flexible lifestyle prior to the injury and positive life behaviors and attitudes to the SCI were the most influential conditioning factors for the body changes. In addition, being young and male, and having good social and family support were the most important factors in coping with the injury.

Participants also perceived that health professionals who were aware of the body changes after an injury were more involved and showed more spontaneous, standardized, and positive behaviors towards their new physical condition, encouraging adaptation and acceptance of their new corporality.

Increased body awareness

Due to the bodily changes following the injury, participants perceived an increased awareness of their body that included two subcategories: an uncontrollable body and reeducating the body.

An uncontrollable body

Participants felt that their bodies were somewhat autonomous, functioning independently and uncontrollably, especially in the early stages. Four codes integrated this uncontrollable body: greater dedication and care, pain, altered bladder and bowel functions, and spasticity.

Greater dedication and care

After the injury, the body demanded more dedication and care to prevent it from “getting worse”, for example, through swelling of the feet or reddening of the skin around the bony areas.

Pain

Pain was the main cause of the increased body awareness after the injury and also the most important symptom that was difficult to forget.

Altered bladder and bowel functions

The lack of knowledge and management of the alterations in bladder and bowel function after the SCI was the main cause of their perceptions of lack of body control and low self-esteem and insecurity, especially when the bowel rhythm was irregular or altered. These alterations were the consequences of the spinal cord injury that were more difficult to face after the pain.

Spasticity, lack of mobility and balance

Spasticity was an unknown and unpleasant sensation. Participants with high spasticity considered it a warning sign for the risk of falling. Other new situations, such as the absence or limitation of voluntary mobility, which made it impossible for them to carry out activities of daily living (ADLs) on their own, or lack of balance, also increased their body awareness after the SCI.

Retraining the body

The process of retraining or reeducating the body included the learning of new routines, changes in the way they dressed and grooming habits, intermittent catheterization, self-management by listening to their body, and receiving support from health professionals and other patients.

New routines

The lack of body control affected ADLs that were previously performed mechanically, routinely, and without full awareness (going to the bathroom, getting dressed, taking a shower, etc.) and which now required prior planification and a new way of performing the same. For example, scheduled intermittent catheterization for emptying the bladder.

Changes in dressing and grooming habits

After the SCI, the participants used sports clothes that were large and more comfortable, which facilitated the process of getting dressed. As a result, they stopped using certain clothes, such as long skirts, dresses, or coats for fear of these getting caught in the wheels of the chair.

In addition, women stopped using high-heeled shoes because of foot deformities or because their feet became unstable on the footrest.

Intermittent catheterization

Intermittent catheterization was a means to get rid of the obstacle and concern about using permanent urinary elimination devices and facilitating their sexual life.

Self-management in response to ‘a message’ from the body

Over time, the participants were capable of retraining their body (a “domestication” of their own body) reaching a very high degree of self-knowledge, a renewed control over the body (bladder, bowel, spasticity…), and a new way of performing ADLs.

The participants stated that it was possible to learn a new language to communicate with the body after the SCI, being able to recover the dialogue with one’s own body. Thus, piloerection and goosebumps were interpreted as messages from their body to empty the bladder or bowel. Whereas a headache and increased spasticity were warning signs of a painful stimulus in the non-sensitive area, constipation, or urinary retention.

Support from health professionals and other patients

The participants considered health professionals as key actors in their process of body reeducation. In addition, they acknowledged they had benefited and learned from the experiences and advice of others with a longer history of injury.

Discussion

People with acquired SCI perceive a new body schema and an increased body awareness. A longer evolution since the injury, having positive life behaviors and attitudes, being young and male, a reduced severity of the injury, a lower degree of dependence on third parties, and having had previous flexible habits help to cope with the body changes after a spinal cord injury.

The results of this study confirm that the loss of body control in individuals suffering from a spinal cord injury has a negative influence on self-concept [13, 19]. In addition, this research analyzes the impact of SCI on corporality in individuals of both genders, different ages, and levels of spinal cord injury, finding that young men value their self-concept and body image after a SCI in a more positive manner. Furthermore, a higher degree of physical impairment is considered a negative factor, although not a determining factor for self-concept and body image, whereas having positive life behaviors and attitudes is considered the most influential factor. This may explain why some people with less physical impairment may be less able to cope with the changes in their bodies after the injury than others with more extensive injuries.

One of the novelties of this study is the influence of age in the adaptation to body changes after an SCI, with young people displaying a better adaptation, as they tend to have more objectives and goals in life, for example, personal and professional concerns. In addition, gender is also an influential factor, thus, men have more positive perceptions about their body and cope better with the injury, possibly because of the greater number of male role models they can look up to. Meanwhile, due to the lower incidence of Spinal Cord Injury in women, women encounter more difficulties finding other women with Spinal Cord Injury to serve as a positive reference and inspirational role model during the coping process.

Our findings confirm that pain decreases the quality of life after SCI and limits the ability to adapt to changes [25].

Our findings are in line previous studies stating that people with SCI consider their bodies to be fragmented [5, 8, 12], and the wheelchair is included as part of the body schema [5, 8, 15]. In addition, we observed a tendency to objectify their own body [5, 8, 14, 19]. Furthermore, our results contribute to the perception of the wheelchair as a new means of body expression that is nurtured, cared for, and which influences the participant’s new dressing style habits.

In addition, our results show that the new body schema after the SCI is an obstacle for achieving the personal goals and objectives that people had prior to the injury. Another novel finding of this study is the new body perceptions after SCI such as the absence of a link between body and mind, making it difficult for thoughts to correspond with bodily actions, or the consideration of the body as something imprecise without defined limits, which should be further explored in future studies.

We know that people with acquired disabilities require time to become aware of the consequences of the injury, to recognize their characteristics, limits, scope, weaknesses and to adapt to their new condition [5, 8, 17,18,19,20]. Our results follow this line, pointing out the need for people with SCI to have accurate information about their abilities after the injury and a period of adaptation to the changes, to avoid leakage of urine or feces leading to embarrassing situations.

This study shows how people with SCI regain a dialogue with their bodies, which is essential for their new routines and the normalization of their bodies. Our findings show how people with SCI learn to interpret certain bodily sensations.

The participants considered that the support of peers with SCI is essential, by learning from their experience and advice. These results support the importance of expert patient programs as a therapeutic element for the treatment of chronic diseases that have been previously studied in pathologies such as diabetes mellitus, chronic heart failure, or severe mental disorders [26, 27].

The role of rehabilitation professionals in the process of adaptation and self-acceptance of people with SCI to their new bodies is relevant and renowned [5, 8, 12,13,14, 19, 20]. Our study also contributes to the association between positive attitudes and training of health professionals and improving the adaptation of people with SCI to body changes after injury. Therefore, strategies aimed at increasing the sensitivity of professionals to post-injury bodily changes, respect, and personalized treatment may contribute to improving the quality of care for people with SCI.

Study limitations

The fact that all participants in this study were treated at the same public hospital may be a limitation, therefore, it would be interesting for future studies to include participants from different care models, to determine whether the perceptions differ.

Another possible limitation is participants’ memory bias. To minimize this, the sample included participants with different times since injury.

Conclusion

Suffering a SCI entails a new body schema and an increase in body awareness. A longer amount of time since the injury, having a resilient attitude, being young and male, a less severe SCI, reduced dependence on third parties, and being a flexible person before the SCI are factors associated with a more positive approach to body changes. When healthcare professionals are aware of the changes affecting the body after a SCI, they have more favorable attitudes and are more involved in helping their patients adapt to their body after the injury.

Future studies should further explore the barriers and facilitators for coping with bodily changes following a SCI by investigating possible influential factors such as culture, beliefs, or religiosity. In addition, it would be interesting to investigate how the injury affects socialization processes, intimacy, and sexuality.