Introduction

Spinal cord injury (SCI) leads to sudden impairment of sensation, motor function, and autonomic dysregulation below the lesion level [1]. The lesion and its effects lead to significant changes in body perception and destabilize an individual’s understanding of the self [2]. The goal of acute care and rehabilitation after SCI is to achieve the best possible physical health and functioning, in accordance with the level and severity of the injury [3], and to maximize the individual’s adjustment to the changed life conditions [4, 5].

The psychological adjustment process is influenced by early mental states during post-acute rehabilitation [6]. An individual’s emotions are often overlooked due to the more evident physical impact of the disability [7]. However, depression occurs in up to 20–30% of individuals during early SCI rehabilitation [3, 5, 8]. Therefore, individuals need to be supported from a biopsychosocial perspective which stresses the importance of injury-related emotional and mental consequences, in order to facilitate decision-making, personal growth, and successful adjustment to the altered life conditions [7, 9].

The relation between the physical and psychological adjustment process is sustained by the concept of embodiment [10]. Mental processes (awareness, cognitive evaluations, attitudes, and emotions) are interrelated with physical body states (motor behavior, physical perceptions) and can only be understood in relation to the body in the context of a specific situation (e.g., frustration after a chair-to-bed-transfer failed can inhibit motivation, and muscle tone) [10, 11]. Individual embodiment can be explored by considering various aspects of body experience. One of the existing concepts of body experience, described by Joraschky et al. [12] includes the notion of body-related perceptive (sensory information, body orientation), cognitive (body attitude, body knowledge, and body fantasies, ego), emotional (body awareness, satisfaction), and behavioral aspects (motor behavior, mimic, gesture, and posture) as well as their integration into a complex body representation.

The aim of this pilot study is to explore individuals’ body experience during the post-acute phase after a recent traumatic spinal cord injury (TSCI) using interview questions addressing the perceptive, cognitive, emotional, and behavioral aspects of body experience.

Methods

Design

This was a qualitative pilot study in the field of TSCI and body experience during post-acute inpatient rehabilitation. The study received ethical approval from the Ethics Committee of Northwest and Central Switzerland (EKNZ 2018-01623). We used the “Consolidated criteria for reporting qualitative research” (COREQ) for reporting the study [13] (Appendix).

Sampling and recruitment of participants

Between September and November 2018, eight participants were recruited from all inpatients undergoing post-acute rehabilitation for SCI at a specialized acute care and rehabilitation center in Switzerland by screening the internal patient database (KB) according to the inclusion criteria of the study: complete TSCI, at least 3 months after injury and not less than 1 month before discharge, aged between 18 and 65 years, fluent in German or English, absence of serious cognitive and/or communication impairment, and absence of psychiatric diagnoses influencing the rehabilitation process.

Individuals meeting the inclusion criteria were presented (KB) to the respective rehabilitation team. The team decided whether to involve the patients in the study or not. Asking individuals about a change in their body experience after a recent TSCI can place an emotional burden on them. Thus, we decided to interview only individuals who demonstrated emotional stability. Then, the project leader (AS) asked the selected eight persons (face to face) about their willingness to participate. All individuals who agreed to participate, received (AS) the study information, and provided informed written consent. Afterwards, an appointment for the interview between the interviewer (KB) and the participant was scheduled. The interviewer (KB) had no therapeutic relation with the participants. Participants were informed that the interviews were being conducted as part of the interviewer’s master thesis in the context of an internship in the area of psychological counseling in the rehabilitation center. The participants did not receive any compensation for their participation.

Participants

At the time of the interviews, all participants were between the third and fifth month of post-acute rehabilitation after TSCI. Two of the eight participants were women, and the overall mean age was 33.25 years, ranging from 19 to 62 years. Two participants had complete tetraplegia, and six had complete paraplegia. Half of the individuals’ TSCIs were sports related, and the other half were due to a fall or traffic crash (Table 1).

Table 1 Participants characteristics.
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Development of the interview guide and data collection

The semi-structured interviews were inspired by the aspects of body experience described by Joraschky et al. [12] and by different body experience and body image questionnaires [14,15,16,17,18]. It was developed in collaboration with an experienced psychologist (HJ) specialized in body-experience research in SCI and adjusted with an experienced rehabilitation physician (AS) (Table 2). The interviews were semi-structured in order to identify unexpected contents. Five pilot interviews were rehearsed with two individuals affected by a complete TSCI and three able-bodied individuals (one medical doctor and two students) to improve the interviewer’s (KB) technique. Eight individual in-person interviews were then conducted and audio recorded for transcription purposes with a mobile device in a private office at the rehabilitation clinic. The average length of the interviews was 46 min. Interviews were introduced using a short body scan based on mindfulness techniques, e.g., “If you want, you can close your eyes to better concentrate on your body experience. How do you perceive your body in this moment?” [19].

Table 2 Sample questions for the semi-structured interview.
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Data analysis

The audio recordings were transcribed verbatim by one researcher (KB), according to the guidelines of Dresing, Pehl, and Spengler [20]. The participants did not check the transcriptions. Based on the structured content analysis of Mayring [21], transcripts were analyzed by one researcher (KB) in the original language by categorizing quotes inductively with the support of MAXQDA 12© (VERBI Gmbh, version 2018) to identify aspects relevant to the research question. Quotes from every interview were then paraphrased and summarized to codes (e.g., “Body feels permanently tired,” “Constant pressure and feeling of heaviness,” “Paralyzed body parts do sometimes not feel like being part of the body,” “Attempts to move something are exhausting”). Emerging codes were further summarized into categories (e.g., “Physical perceptions in the healthy body parts”), which were then compared between the eight transcripts and subsequently summarized and regrouped again. The codes of two randomly selected interviews were cross-checked by another researcher (AS), and a third researcher (HJ) reviewed all the selected codes and identified categories. The categories were then discussed (KB, HJ, and AS) to include different perspectives and resolve uncertainties.

Following the principles of the COREQ criteria, we checked for saturation of the major categories by comparing emerging aspects between the first six and the last two interviews.

Results

The analysis identified the following six categories, which were also confirmed during the saturation check on the last two interviews.

Category 1: Physical perception

(Table 3) In the participants’ description, physical perception of the body included the perception of sensory information on the body surface and internal body signals.

Table 3 Quotes about physical perception.
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In the paralyzed parts of the body, the physical perception was described as dominated by the absence of sensitivity (Q1), the presence of spasticity, neuropathic pain (Q2), and constant or intermittent tingling, which was related to pain (Q3), relaxation (Q4), or the sensation that something was still active in the paralyzed body parts (Q5). In the body parts not affected by the lesion, many individuals expressed difficulty in verbalizing perceptions (Q6), ranging from constantly normal feelings (Q7), higher sensitivity than before the injury (Q8), no feeling, or feelings related to pain (Q9) or relaxation (Q10).

Category 2: Perception of the self

(Table 4) “Perception of the self” described the consciousness of a continuity of individuals’ identity pre and post TSCI, although the body and person changed due to the consequences of the injury and individual adjustment.

Table 4 Quotes about perception of the self.
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The participants only perceived small changes in their physical appearance following the TSCI and felt they were still the same person as before the injury (Q11). All participants described their paralyzed body as being part of their body (Q12). However, many expressed incomprehension of the dysfunction in their paralyzed body parts (Q13) and difficulty in accepting them from a long-term perspective, given that they no longer fulfill their original function (Q14). People with paraplegia did not describe themselves as disabled (Q15); their description of body experience focused on the remaining abilities to be active, which were greater than previously imagined (Q16). They verbalized the necessity to get used to this unfamiliar body condition (Q17). In contrast, individuals with tetraplegia described their body experience as dominated by the experience of total dependence, which was an emotional burden for them (Q18). Some participants described the lack of feeling movement and activation in their whole body as an important concern (Q19). Individuals with tetraplegia reported that they are almost always focused on their body (Q20) and that they perceive themselves as more disabled than people with paraplegia, for example, with regard to their body movements (Q21).

Category 3: General attitudes toward disability

(Table 5) The experience of the self in a body with a disability influenced individuals’ knowledge and changed their attitudes to other persons with a disability, as well as thoughts about the self.

Table 5 Quotes about general attitudes toward disability.
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Individuals characterized their attitudes prior to the injury as unawareness of the invisible impact of disability (Q22) and noted that, due to their own injury, they had become aware of the daily obstacles a person with paraplegia or tetraplegia must face (Q23). Some of them reported that their previous assumption—that physical impairment is linked to mental impairment—had changed due to their firsthand experience, and having a disability does not necessarily mean having a mental impairment (Q24). The participants expressed their recognition that each person is different, although they may share injury-related characteristics (Q25).

Category 4: Body-related emotions

(Table 6) Exploring body experience, different emotions emerged and were related to topics of autonomy and acceptance.

Table 6 Quotes about body-related emotions.
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All individuals verbalized the simultaneous existence of anxiety and hope concerning their current and future body state (Q26). Frustration and sadness also occurred regarding their absence of sensitivity (Q27) and inability to control their paralyzed body parts voluntarily when they moved involuntarily due to spasticity (Q28). Some even verbalized anger at themselves due to the obstacle of paralysis (Q29). Well-being was related to better health condition (Q30), relaxation (Q31), improvement, or increased autonomy, such as improved bladder and bowel management (Q32). One participant described refusing to accept the paralyzed body by not caring for it, except when specific care was required (Q33), while others tried to reestablish a connection with their paralyzed body by appreciating and taking care of it (Q34).

Category 5: Body-related communication

(Table 7) Finding words for body states and experiences within their own body increased body-related understanding and improved communication.

Table 7 Quotes about body-related communication.
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The participants indicated that body awareness and communication of personal experiences were important to make outsiders understand their situation and behavior, which increased the support they received (Q35) and helped relatives deal with the situation (Q36). Verbalizing personal needs and preferences made it possible to discuss situations and adjust the support to their individual needs (Q37). Nevertheless, participants expressed that asking for help with their self-perceived less important needs was more difficult than asking for assistance with obviously important needs (Q38).

Category 6: Body-related thoughts about the future

(Table 8) Talking about body experience, thoughts about future challenges with their body with a disability influenced individuals’ motivation to be active and autonomous.

Table 8 Quotes about body-related thoughts about the future.
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Individuals’ body functions were constantly alternating between improvement and stagnation, resulting in insecurity about their future (Q39). Many participants verbalized worries concerning their ability to cope with upcoming situations in their lives (Q40). Most expressed a desire to return to the life they had before their injury, acknowledging that their present life was quite different from the previous one (Q41). They described the importance of being physically active (Q42) and autonomous as they were prior to their injury (Q43), and they did not emphasize specific gender role-related expectations of themselves (Q44).

The participants reported acquiring SCI-related knowledge and adopting specific techniques in order to cope with their daily life and take care of their body (Q45). They said that an optimistic attitude (Q46) and hope (Q47) were essential for dealing with their new life. Allowing them to accept themselves and appreciate even small progress (Q48), they recognized the need to adapt their physical goals in light of their new reality (Q49). Their active participation in the rehabilitation process (Q50) led to a perceived sense of autonomy and less need for external assistance and help (Q51).

Discussion

The body-centered interview questions, integrating Joraschky’s categories [12] and other concepts [14,15,16], stimulated the participants’ body awareness and reflection on their individual physical and psychological adjustment process to TSCI-related changes.

The understanding of the body and the TSCI-related consequences to individual health- and future life perspectives dominated the body experience in individuals after TSCI. This understanding for both the individuals, and significant others and health professionals, can be increased through exploration and verbalization of physical, cognitive, emotional, and behavioral aspects of the body experience.

When we started the interviews with questions related to physical perception, the important topic of bowel and bladder management [22] was expressed. Exploring physical perception can help the patients to verbalize bladder and bowel issues, which might be difficult to talk about due to shame. This topic is associated with the perception of control, autonomy, self-esteem, satisfaction, and quality of life, as emphasized in the previous literature [5, 23,24,25]. For participants, it seemed to be easier to talk about bowel and bladder management and different sensations in their paralyzed body parts than to verbalize their perceptions of body parts not affected by the lesion. Our explanation for this is that body parts that feel “normal” or at least do not cause any pain or obstacles are less consciously perceived. Also, Bailey et al. emphasized that participants discussed negative body image experiences more easily [26]. For persons who do not feel all parts of their body, information coming from their sensitive body parts can help them to perceive and satisfy their general bodily needs (e.g., feeling a kind of tension in the arms when having a full bladder). Therefore, rehabilitation clinicians might help to explore the sensitive parts of the body and the individuals’ strengths as well as the disabled parts of their body to increase understanding of the body functions and needs.

Exploring aspects of body-related cognition, participants verbalized the importance of increasing their knowledge of their body and body functions, as the understanding of their body and their person was destabilized. The awareness that their physical appearance had not drastically changed since the injury, helped individuals to see a continuity in their physical body and their identity pre and post TSCI. This is known to help a person develop more self-confidence [9]. Past research showed that the perception of a more or less stable physical appearance increased satisfaction with an individual’s own body image [27]. Thus, increasing the understanding of the body can support acceptance of the body and the adjustment of the individuals’ identity to bodily changes. This supports the notion that active engagement, education and knowledge transfer are important to foster self-exploration and self-reflection during rehabilitation [28, 29].

When asked about body-related emotional aspects, participants reported that an absence or decrease of pain increased satisfaction and well-being, which has also been reported in the literature [30]. Individuals expressed additional emotions, such as anxiety, anger, and insecurity, related to the difficulty in harmonizing personal goals with their functional abilities, as relevant aspects of their body experience [31]. The topic of hope emerged during the interviews based on the exploration of different aspects of body experience. Hope was an important feeling, which is recognized as a facilitator of adaptive coping strategies post-SCI [32,33,34] and has been linked to better adjustment [35]. Psychological adjustment after TSCI and well-being within the body and person are heterogeneous, influenced by individual physical, psychological, social, and environmental factors [36,37,38,39,40]. Participants highlighted their hopeful attitudes toward physical recovery and increasing autonomy, based on trust in their body and the perception of a continuity in their identity pre and post TSCI. Rehabilitation professionals can help individuals during the post-acute phase after TSCI to withstand the emotional ambivalence between hope and anxiety or anger, and therefore, support the development of a healthier body image [21], acceptance of one’s body, including related physical and psychological experiences [16, 36, 37].

Exploration of body-related behavior seemed to be difficult for the participants during the post-acute phase of rehabilitation, as they still perceived changes in their sensory perception, mobility, and functionality. Thus, they found it difficult to use and control their body and to verbalize how they use their body to express themselves. Their voice became a more important instrument than facial expressions, gestures, or posture. Expressing their body experience was crucial for increasing health professionals’ and relatives’ understanding and awareness of the situation of the participants. In particular, individuals with tetraplegia emphasized that open discussions facilitated handling their situation for everybody and contributed to their ability to receive adequate support [41]. Therefore, communication was important for expressing their physical body perception, thoughts, and emotions. Patient-centered communication can be improved by education and trainings for healthcare professionals to increase their ability and self-confidence to ask individuals about their experiences, emotions and needs [42, 43]. Learning from the experience of others, e.g., peer support, can improve communication and relationships, support self-management and allow time and space for individuals with new SCI’s to talk about important issues [44, 45].

An appreciative and interested attitude during interactions with patients can create an atmosphere of openness, awareness, warmth, and respect. Such a mindful atmosphere [19] leads to the feeling of safety, supports individuals’ self-expression, and is important for improving their adjustment process, participation in decision-making, and self-acceptance during rehabilitation [9]. Increasing awareness of the own body and different body states (by asking for perceptions and needs), gaining new experiences with the body (during activity and interactions) [10], assuming the responsibility to care for it, and learning to better communicate, can empower the individual with TSCI to assume the role of specialist of his or her body and person.

Conclusion

This pilot study provides in-depth insight into participants’ body experience after TSCI, who share the experience of a lesion to the spinal cord but differ in their specific personal circumstances as well as in their cognitive and emotional perceptions of the situation. The exploration and verbalization of individuals’ experiences and needs related to their paralyzed and non-paralyzed body parts, to their emotional ambivalence between the hope for recovery and the anxiety for future perspectives and changed possibilities to be autonomous, emerged as basis for the understanding of their body and further physical and psychological adjustment processes after TSCI.

Rehabilitation professionals play a crucial role in stimulating and supporting behavioral, emotional, and verbal reactions to the injury, as they are present during individuals’ first experiences with their body after SCI. Showing an interest in different aspects of patients’ experiences during the adjustment process, analyzing these aspects together, and encouraging individuals to increase body awareness and verbalize their experiences can help to support patients’ ability to care for their body and to begin to integrate new experiences in their biographical identity. Therefore, health professionals should be educated in mindful communication and in the knowledge of different emotional aspects being affected after a TSCI. The aim of this education is to improve health professionals’ ability to ask patients about their body experience, and to accompany the adjustment process early during rehabilitation, and therefore to individualize the rehabilitation process.

Strengths and limitations

For this qualitative interview-based pilot study, we recruited a sample from one rehabilitation center. Thus, it is uncertain how generalizable these results are to other populations with post-acute TSCI. We are aware that we missed important information by excluding participants with impaired cognitive or communication functioning, individuals who were not considered to be stable from a psychological perspective, as well as people after nontraumatic SCI. Nevertheless, this purposeful sample includes different lesion levels, ages, cultures, languages, and both genders. To the best of our knowledge, this is the first study to explore body experience during SCI post-acute rehabilitation.