Abstract
Background The body is central to the practice of physical therapy, but clinical theory largely neglects the body as a concept. A better understanding of the embodied experience could enhance delivery of physical therapy.
Objectives The purpose of this study was to gain an in-depth understanding of embodiment for people after stroke while transitioning from the hospital to the home.
Design and Methods Seven people with stroke, aged 66 to 89 years, were interviewed 1 month after discharge from a stroke rehabilitation unit. Interviews were analyzed using grounded theory methods, and a theoretical model was developed.
Results Two main themes in the embodied experience of stroke were: (1) “a divergent body-self,” where participants referred to an objective physical body, separate from their sense of self, and (2) “a cohesive body-self,” reflecting a sense that “it's all me.” The theme “a divergent body-self” included subthemes of a body that was “strange,” “unpredictable,” and “effortful.” In contrast, the theme “a cohesive body-self” comprised the subthemes “freedom,” “control,” and “self-identity,” reflecting experiences of bodily movement, personal independence, and self-identity. Participants fluxed between these perspectives, within moments and over time, with these perspectives influenced by “anchors,” including their environment, knowledge, and attitude.
Conclusions The bodily experience of stroke is intimately connected with a person's sense of self. A person's social and physical environment, as well as his or her personal attributes, can serve to “anchor” that person more comfortably within his or her embodied experience of stroke. Theory that acknowledges the integral connection between body and self could enhance physical therapist practice. This study supports the need for physical therapists to be adequately informed to integrate the embodied experience in their practice when working with people after stroke.
The body is central to all of physical therapist practice. It is the core subject of physical therapists' work and is intimately linked to their professional identity.1 Despite this central significance, the way the body is conceptualized and experienced in illness or after injury has seldom been critically examined in physical therapy literature. Indeed, physical therapy has been criticized for being dominated by a biomedical perspective, with a primarily physical view of the body, limiting the adoption of person-centered rehabilitation.1–3 Although the importance of psychosocial issues after stroke has long been recognized by physical therapists, these issues tend to be seen as separate from those related specifically to the body,1 indicating, at best, poorly integrated concepts of the body in physical therapy theory.
The term “embodiment” is used to refer to how people live in and experience the world through their bodies.4–6 Embodiment theory acknowledges that the lived body is never just a material object in the world, but is the basis for understanding others, for understanding ourselves, and for participation in everyday life, including our engagement in valued activities and social roles.6–10 Hence, embodiment theory has considerable relevance to physical therapy as a rehabiliation profession. Although health care is increasingly touting person-centered care,11–13 the lived bodily experience of health conditions does not yet feature in theoretical models of health.3 Rather, the body is typically represented within practice and literature in disembodied compartments (eg, muscle weakness, low blood pressure, upper limb function).3
More specifically, in this article, we draw on the theory of embodiment in health and illness promoted by Nicholls and Gibson.1 From this perspective, embodiment is seen as comprising an interaction among at least 3 components. First, embodiment is inclusive of the objective reality of a person's illness (ie, the structural, physiological, and pathological components of functioning and disability). Second, embodiment includes a person's subjective experience of his or her body and the meaning derived from this experience. Third, embodiment includes the socially constructed nature of people's bodies, which arise from interactions between the individual and the social institutions in which he or she is engaged. These social institutions, in part, dictate what is and what is not considered to be a typical body versus an atypical body, that is, which bodies are “normal” versus “different from the norm.”
To give an example in terms of stroke, the subject of our research, embodiment includes (but is not limited to) recognition of the actual impairments of strength, coordination, and sensation that arise from lesions to physical parts of the brain that usually control these functions. Embodiment also includes a person's subjective experience of these impairments and how he or she make sense of or interpret them. Furthermore, it recognizes the influence of social structures and constructions on these interpretations. For instance, embodiment includes recognition of how society classifies a hemiplegic arm with soft tissue contractures at the elbow, wrist, and hand as being a “deformity” and the impact of the social responses (both desirable and undesirable) that arise from others as a result of this classification.
A number of studies have examined aspects of how a person's experience of his or her body changes after stroke, beyond the more obvious changes in muscle function or sensation. These studies have developed or adopted several overlapping concepts, including that of self-body split,8,10,14 altered bodily awareness,6,14,15 altered perception of self,6,14,16 altered social self-body,14,16 and a journey of change.8,10,15,17 Broadly speaking, common to these studies is the representation of a body that, to the person after stroke, feels: (1) foreign, (2) out of control, and (3) in conflict with self-identity. These confusing and negative perceptions of the body have been commonly associated with loss of confidence and grief among people after stroke,6,14,16 and suggest that body changes after stroke mean more to the individual than just loss of physical ability.
The relationship between body and self after stroke thus appears to be dynamic and influenced by a number of factors, although this experience is not yet fully understood. We postulated that the transition period from the hospital to the home would be a particularly useful time in which to examine experiences of embodiment after stroke as past research has suggested this is a time when people are confronted by the significance or implications of changes in their bodies after stroke14,18–20 or when they begin to identify having an altered sense of self.8,19 The aim of this study, therefore, was to explore embodiment and stroke through understanding participants' bodily experiences and how this related to their lived experience during the first month at home following discharge from hospital-based rehabilitation after stroke. Nicholls and Gibson's perspective on embodiment provided a strong theoretical foundation for this work, and fitted well with the constructivist epistemology that we used in its application.1
Method
This study used Charmaz's approach to constructivist grounded theory21 and involved analysis of data from interviews with patients recently discharged from the hospital after stroke. Grounded theory was selected for this study because it enables conceptual theories to be developed from information “grounded” in the data, serving to explain what is being expressed, rather than being based on an a priori theoretical orientation.21,22 This distinction was especially pertinent when researching the notion of embodiment in stroke, where there are currently no widely established theories.4,10,14
Charmaz's constructivist approach to grounded theory differs from more traditional forms of grounded theory22 through its application of constructivist epistemology in the production, analysis, and interpretation of data. Constructivism is a belief that knowledge and meaning do not reside in objects in the world but are created through the engagement of meaning-makers (ie, people) with the world.23 Thus, from a constructivist perspective, a researcher is unable to simply observe an individual's reported experience of a phenomena (such as recovery from stroke). Rather, the researcher unavoidably influences the creation of that report, and hence interpretation of the lived phenomena, through their interaction with the individuals involved.21 Indeed, this co-creation of meaning in partnership with study participants is valued in constructivist grounded theory, whereby the richness of the relationship between researcher and participant is considered to directly influence the productivity of data collection and interpretation. Charmaz thus emphasized a need for the researcher to develop an intimate familiarity with the research participants, suggesting that one interview is insufficient to build such a relationship and risks the analysis becoming incomplete or representing a “sanitized view of experience.”24(p275)
Participant Selection
We sought participants who had a first-time stroke with a resultant change in their body function and who had sufficient cognitive and communicative ability to provide informed consent and to participate in a semistructured interview in English. Participants needed to self-identify as having experienced a significant change in physical ability since their stroke. The purpose of this criterion was to focus the study on exploring experiences of people regarding body changes after stroke. If potential participants felt they had experienced no physical changes, their experience would not inform this research question substantially, so we did not recruit them for the study.
We used purposeful sampling to select people who were likely to have had a broad range of experiences of embodiment after stroke.25 Initially, we aimed to include both men and women who differed in terms of stroke severity and subjective level of adjustment. Subsequent participants, however, were selected using theoretical sampling, whereby initial data analysis informed subsequent decisions regarding what data would be collected next and from whom.21 For instance, after the first 3 interviews were completed and analyzed, we decided we needed to examine the distinction between experience of weakness and experience of loss of control in closer detail, so we specifically modified our recruitment strategy to select people with experiences of severe weakness to interview. Thus, we made strategic decisions about which participants were likely to provide the most information-rich data to meet the analytical needs of the study in relation to data already collected.
Participant Recruitment
Two physical therapists (not otherwise involved in the study) first identified potential participants from their clients in a stroke rehabilitation ward for people over 65 years of age located in Christchurch, New Zealand. We informed these physical therapists about the study objectives and asked them to approach patients in the hospital who met the inclusion criteria. If the patients expressed interest in the study, they then met with the first author (E.K.T.) to discuss the study and, if they agreed, to sign an informed consent statement. The first author was a Caucasian, 30-year-old woman who worked as a senior physical therapist at the hospital in which we recruited the participants. We informed participants of the first author's status as a hospital employee, but that the study had no bearing on any rehabilitation services they might receive and that physical therapists other than the first author would be delivering their clinical care. We also informed the participants that the aim of the study was to improve understanding of people's bodily experiences after stroke. We updated the recruiting physical therapists when we had modified the recruitment strategy as a result of theoretical sampling.
Data Collection
The first author contacted the participants via telephone on a weekly basis for the first 3 weeks following their return home. Telephone calls were audio-recorded and transcribed and were structured around questions that focused on their experience of life at home during the previous week, their perceptions of physical activity, and any new observations they had made regarding their poststroke body. The purposes of these initial telephone calls were: (1) to build rapport with the participants prior to the main interview, (2) to gather information about their initial experiences of their body and attempting to return to physical activity after discharge from hospital, and (3) to provide contextual information about the participants' lives to inform the development of the main interview questions.
One month after discharge from the hospital, the participants met with the first author for an individual, semistructured interview in their own home. The interviews involved open and nondirective questions, but centered on the experiences that participants had of their body after stroke. (An interview schedule is provided in the Appendix.) Interview questions evolved with subsequent interviews in relation to the emergent themes. For instance, we used later interviews to explore in more depth the ways in which participants objectified their own bodies, as this was a consistent occurrence among participants that we needed to understand in more detail. As the participants had already shared descriptive accounts of their experiences of stroke and recovery during the initial weekly telephone calls, conversations during the face-to-face interviews could quickly move on to more abstract ideas related to experiences of embodiment, with information gathered during the telephone interviews directly informing this latter data collection. Face-to-face interviews ran for 30 to 70 minutes and were digitally recorded and transcribed verbatim.
Data Management
Following grounded theory methods, participant recruitment, data collection, and data analysis were conducted concurrently. Initial interpretation of data from the first few participants influenced sampling decisions, amendments to the interview schedule, and the focus of subsequent analysis. Interview transcripts were coded and categorized in qualitative data analysis software, NVivo (version 10, QSR International Pty Ltd, Doncaster, Victoria, Australia),26 using the constant comparative method. All researchers read and coded each transcript, with subsequent rereading and coding incorporating findings from additional interviews.
Data Analysis
The relationships between identified codes and categories were explored with increasing levels of abstraction of the data using progressive levels of coding.21 This analysis culminated in the formulation of an interpretative theoretical model representing the participants' embodied experiences. We made decisions regarding reaching data saturation when we all agreed that we had gained sufficient information from which to draw conclusions regarding the main research themes. This was the point where we no longer identified new categories of information from interviews and believed that further data were unlikely to reveal a new direction.21,22
Maintenance of Scientific Rigor
We promoted scientific rigor through a variety of methods. We enhanced the trustworthiness of the analysis by reviewing and coding of the interview transcripts individually before comparing and discussing our findings as a team. This approach helped ensure that themes highlighted in the analysis were evident in the data and not imposed on them. We used other reflexive processes to examine and account for our influence as researchers on the production and analysis of data. These processes included the first author completing immediate journaling of impressions and accounts after each telephone call and interview, memo writing, and the use of regular team meetings to discuss emerging ideas. In addition, we conducted a presuppositions interview with the first author before any data collection to identify, highlight, and consider initial assumptions and beliefs prior to engaging with the study participants. Resonance was further enhanced through member checking by sending a summary of findings to participants to ensure that their stories and perspectives had been correctly recorded and understood and to allow an opportunity for them to respond. No additional comments were made by participants at this stage.
We designed the study so that the first author, who worked clinically in the region, had no clinical involvement with the participants in this study in order to separate her clinical and researcher roles. The other 2 researchers (one a physical therapist and the other an occupational therapist) were not clinically practicing in the region, allowing them to act as independent third-parties in the study and providing outsider perspectives for reflexivity and discussion of any significant ethical issues that might arise during the study (none did).
In order to protect participants in this study, we used pseudonyms in the transcript and replaced identifying features (such as names of places or services) with generic nouns to ensure anonymity. We treated participant interviews confidentially, giving the participants full control over how much information they disclosed. If participants raised questions about their clinical management during interviews, the first author gave them information and support regarding how they could access services to address these issues.
Role of the Funding Source
This research was supported by the Canterbury District Health Board, New Zealand.
Results
Participant Characteristics
We interviewed 7 participants (5 men, 2 women; aged 66–89 years). All participants were of New Zealand European ethnicity. One additional man initially agreed to join the study but withdrew after leaving the hospital, as he felt he had too many other commitments. The Table summarizes the participants' stroke type, length of admission, and circumstances. Two participants chose to have their spouse present during the interview, both of whom contributed minimally to the conversation.
Overview of Participants
Overview of Findings
For the participants in this study, the core experience of the embodied self 1 month after discharge from the hospital was that of being in a state of flux between having a “divergent body-self” (ie, “this body and me”) and having a “cohesive body-self” (ie, a sense that “it's all me”), as illustrated in the Figure. We present these results with extracts from transcripts to illustrate key points. More extensive examples from the transcripts, along with information on the transcription conventions used, are provided in the eAppendix.
Visual representation of the embodied experience for participants transitioning from the hospital to the home after stroke.
The term “flux” is used to refer to the movement that occurred between these experiences. The divergent and cohesive body-selves, although seemingly opposing, were not mutually exclusive. Rather, varying experiences of divergent and cohesive body-selves could be held by the participants simultaneously. Participants in this study could hold—at times concurrently—both high divergent and high cohesive experiences of body-self, or they could hold a mix of high and low divergent or cohesive experiences of body-self. Divergence and cohesion did not sit at opposite ends of a spectrum, but instead were states that participants fluxed between both throughout the interview process and over time. This state of flux was particularly evident when participants expressed seemingly contradictory statements about their bodies and self-identity after stroke. Thus, participants could report the experience of having a different body yet retaining a familiar sense of self or, alternatively, reported feeling as if they had the same body but a different sense of self. For example, Helena, when asked whether she felt differently about her body after stroke, replied: “No, I don't think so. It is different, but I'm not feeling differently about it. It's still me, but it's, this part of me [slaps left thigh] is just the same as usual, lots of my leg is just the same as usual [slaps left leg].” But at same time, when asked about the experience of life after a stroke, Helena stated, “It feels as if you've gone and somebody else is in your place.”
Although there was a tendency for the cohesive body-self to be referred to positively, the divergent body-self, at times, also could be referenced in a comfortable and positive light. For example, Matthew described his experience of left homonymous hemianopia (left visual field loss in both eyes): “I'm looking here now, and everything looks normal, even with this being blanked out here [indicates left side]…. Sort of a strange feeling really.” For Matthew, this new bodily experience was merely an observation rather than a source of distress. Nevertheless, participants described a range of factors that appeared to ground and thus reassuringly “anchor” them in the midst of what was often a confusing and surreal experience. “Anchors” included the individual's knowledge, positive attitude, and their environment (both social and physical). These factors anchored participants to a more connected and coherent bodily experience.
A Divergent Body-Self
Participants described their bodies as being distant and in conflict with their previous and current self-concepts. Although all participants most often described their sense of self as remaining constant throughout their recovery following stroke, their bodies had contrastingly become: (1) strangely foreign, (2) unpredictable, and (3) effortful.
Bodily strangeness.
All participants, regardless of stroke types, stroke severity, or impairment characteristics, stated that their poststroke body was not only different but rather fundamentally strange to them. Participants would simply state, “It's just strange” (Michael), and although they sometimes attributed this strangeness to altered sensation or a lack of control of their bodies, there was often an element to this strangeness that they found inexplicable. Indeed, many participants expressed how “unreal” their physical bodies felt after stroke. Some participants described this sensation as being so marked as to be “otherworldly.” For instance, George stated, “I didn't think I was that ill. But then I was in another world. I presume. I don't know.”
Participants often highlighted how, prior to the stroke, they had never particularly thought about how they connected with their body—it was simply “normal.” The experience of stroke, however, had made the participants increasingly aware of their bodies because of its unfamiliarity. This increasing awareness was especially evident in frequent objectification of their bodies, which many participants referred to in the third person. For example, Grace described:
See, sometimes in the morning I play with this [referring to her arm] and make it come up [lifts arm], and at some points, it hurts, but…my son is pleased to see me doing this with it. See, I lift this now…[attempts to lift arm]…. I'm disappointed in it.
Grace's reference to her arm indicated a sense of her body being separate from herself, with Grace being the distant operator. Her comment that she was disappointed in “it” reinforced this separation from her arm, which she had personified and felt negatively about.
An unpredictable body.
The participants' experiences of a divergent body-self also related to how their poststroke bodies had become unpredictable. Helena, who had dyspraxia, described how her arm appeared to have developed a life of its own:
My arm is [slaps left arm], I can still feel it, I can feel it, but it's gone unpredictable. It doesn't, it isn't doing this so much [demonstrates wavering left arm]; it was knocking the food off my plate, or some of it. And yesterday, what did it do yesterday? Something unpredictable.
Helena spoke about her arm as if it were a separate, insolent entity, one capable of generating its own behavior. The participants' lack of control and inability to fully predict how their body would respond when used caused them to be more cautious in everyday activities. For example, Peter spoke of how tiredness affected him:
And the tiredness. I get very tired. I'm quite tired today, whereas yesterday I was fine and the day before…. Nothing mentally but just tired, the body's just tired. And I thought, “Well, today, I'll just have a quiet day, sit back.” And that's been a big thing for me. Mentally, I'm alright, and going to, you know, I've accepted the fact that this is what, this has happened, this is what's happened.
Participants alluded to slowly acquiring a tolerance of their poststroke embodied experience despite unpredictability, suggesting a growing acceptance of their altered body over time.
An effortful body.
Participants described their poststroke body as effortful to move and far more demanding of their concentration than prior to the stroke. Effort contributed to participants feeling distant from their body. For instance, Don, who was unable to move his right arm and had limited movement in his leg, stated, “It [movement] feels different effort [sic]. Effort's different. But I hope to get it better. But it is slowly coming back.” Similarly, Grace described the complete lack of movement in her affected arm when trying to remove her hand from the walking frame:
This left one, if I get on there [indicates walking frame], it's so hard to get it off. I can't seem to move the fingers off. I've got to physically shift them.
When asked what it felt like to move her arm, Grace replied, “Heavy, just heavy as lead.” As a result, like Grace, participants frequently described having to exert more effort and concentration on everyday movements, which they had previously performed automatically.
Effort was evident among participants, with varying levels of impaired movement, from those who had little ability to move without help to those who could walk without aids. Michael, who walked with a stick, stated that:
When I'm walking now, it's quite a bit more effort because you gotta work with each leg to move forward, and, you know, make them, place them in the right position and everything like that. So you're not going to fall or anything like that.
Michael had learned to master his changed body so that he could still move despite the effort he experienced. Therefore, although the divergence of a strange, effortful body remained, participants were able to again become familiar with their body after stroke.
A Cohesive Body-Self
In contrast to experiences of a divergent body-self, an overarching sense of wholeness in their body-self remained for participants, albeit to varying degrees. When expressed, this wholeness conveyed a sense of the participant's body and self as seamlessly connected (ie, a cohesive body-self, which encompassed a sense that the collective experience is “all me”). The experience of a cohesive body-self contained 3 key elements: (1) regaining control, (2) a feeling of freedom, and (3) a clear sense of identity.
Regaining control.
“Regaining control” refers to participants' experience of bodily control and their sense of control over their lives generally. All participants expressed how their stroke had influenced their sense of control, such as Grace, who stated, “I was completely out of control” when describing her experience in the hospital. When participants referred to their sense of control, either over their body or more generally over their lives, they used phrases that reflected a sense of wholeness, associating their bodily control with self-assurance and progress:
See, we walked all around the supermarket the other day, and I came home, and I was “as good as gold”*…. It was just a matter of getting that self-assuredness back, to get the confidence back. (Matthew)
Matthew linked his sense of bodily control in walking directly with his self-assuredness in general. When Matthew was able to walk around the supermarket, there was a sense of “it just is,” where his body and self were cohesive. The importance of control also was apparent in the participants' social roles, self-identity, and general existence. For example, in response to the question “What does it make you think when your arm is unpredictable?” Helena described how her lack of arm control influenced how she felt about herself generally:
That, it makes you wonder if it's coming, if it will come back. It makes you initially feel as if you're losing control of yourself completely [chuckles]…. That is a big shake-up. To feel that, um, a part of you has, well, maybe died. That is very challenging.
This overwhelming lack of control expressed by participants often prompted existential contemplation, where they questioned the control anyone has over their lives and particularly how stroke amplified this feeling of having, or not having, control.
Freedom.
The participants referred to freedom in the context of bodily movement and of life choices. Where the participants experienced freedom, they spoke of themselves as being whole rather than as having a body separate from their sense of self. Conversely, where participants had not fully experienced a sense of freedom (and were still seeking it), they referred to it as core to the sense of feeling physically whole or well. For example, George described how his walking related to freedom and his sense of coping:
Walking with a frame is not as free moving as walking without a frame. So I really miss that…. It's lovely to be able to walk around here without the frame. It's quite a free feeling, and I can cope.
Similarly, Grace linked lack of ownership of her body's movement to the feeling of loss of freedom, “Suddenly, you're devoid of being able to use your hand, get out and walk, do your own thing; your freedom's all gone.” Grace related her sense of bodily freedom to her independence and perceived freedom of choice.
Sense of self.
The participants' personal accounts of recovery also closely linked a cohesive body-self to an enduring self-identity. For some participants, a mismatch between the embodied experience and self-identity could result in disappointment and confusion. For example, Helena described herself as being an active person prior to her stroke who “never sat down.” However, the physical restrictions from her stroke, including weakness, incoordination, and fatigue, caused Helena to spend much more time sitting alone at home:
[I'm] a vegetable. A very annoyed vegetable. I don't like it at all…. I'm a vegetable because I just can't seem to, somebody's got to accompany me, whether it's in the car, if I go for a walk, and, anyway, I can't walk very far. That makes me feel more like something that's planted than a person. I'm stuck at the moment.
This negative expression of being a “vegetable” related to her dependence on others after her stroke and her reduced capacity for activity. Helena attempted to explain this feeling further by saying that “it feels as if you've gone and somebody else is in your place,” indicating that her ability to move was reflected in how she identified as a person.
Other participants, however, described having an enduring self-identity despite their inability to match their body's current abilities and characteristics with their prestroke sense of self. The presence of an enduring identity appeared to minimize the degree of bodily strangeness that participants experienced. For example, Peter, who also described himself as having been “an active person,” stated:
I mean, my friends that I have a beer with and all that, you know, they can see that I'm alright mentally and everything like that, it hasn't affected that. So they don't sort of, you know, they were concerned for the start, but they're not now. I just join in and carry on, just do everything myself as much as I can, you know…just be one of the group really.
Despite Peter being physically less able after his stroke, his sense of identity had not changed, enabling him just to “carry on.” Thus, Peter's constant identity almost overrode the profound change in his bodily ability.
Anchors
Participants described a range of factors that appeared to ground and thus reassuringly anchor them during what was otherwise a confusing and unfamiliar embodied experience. We identified 3 types of anchors in this study relating to: (1) knowledge, (2) positive attitudes, and (3) the environment. Often, these anchors supported the development of a more cohesive body-self experience (ie, that “it's all me”). However, there also were times when anchors just made participants feel more comfortable with a divergent body-self. These anchors, therefore, appeared to assist the participants in their journey toward adapting to their embodied stroke experience, regardless of the extent to which this was a cohesive or divergent experience.
Knowledge.
Knowledge, as an anchor, included general knowledge of stroke physiology and recovery, as well as insights that participants gained of their own poststroke body. New knowledge helped participants to make sense of why they were experiencing their body differently after the stroke, and this understanding provided reassurance. For example, George, explained a theory he had akin to neural plasticity based on wiring: “My thinking is that the brain is wired one way, and if I can get something that can connect those little wires together, [I can] change it.” Participants' knowledge of their poststroke bodies allowed them to modify everyday activities to allow for changes in their bodily limits, including, for example, monitoring fatigue or using aids in certain situations.
Positive attitude.
The participants reported that attitude, specifically a positive attitude, helped anchor them to a more personally acceptable embodied experience. All participants spoke of their individual approach to their stroke recovery, which related closely to how they interpreted their bodily experiences. The participants' sense of hope, which was featured highly throughout the interviews, was often linked to discussion of the challenges they faced with their poststroke bodies. For instance, Don described what it felt like to lift his arm, as follows: “It's, er, heavy. It just stops…try to pick it up every day. I hope, I hope, I hope it gets higher.” This sense of hope appeared to help Don tolerate the frustration of being unable to lift his heavy arm.
Three participants (Grace, Helena, and George) described how a sense of purpose beyond their own lives, in religion or metaphysical meaning, could empower them to face adversity after stroke. Having a higher purpose in life was mentioned, in particular when reflecting on lost bodily control and strangeness:
I think it's [the stroke] made me realize I've got to get more depth, yes. And I think it's made me more dependent on God. You know, when you've got full health and everything, you don't need anyone, do you? (Grace)
In contrast, negative emotions (eg, fear of one's body failing now or in the future) could act to “de-anchor” participants by creating uncertainty and anxiety about their body. For example, Grace spoke repeatedly of feeling scared in relation to a fall she had had when she was getting out of bed:
And I did have a scary experience, because I did…. I don't think she [nurse] realized how very sort of unstable I was, mentally and physically. And I fell down here [indicates side of bed], and it's made me very scared.
Fear was directly linked for participants like Grace, with feeling unstable “mentally and physically,” and thus vulnerable. Grace's bodily experience was one of anxiety and fear whenever she got out of bed or saw that particular nurse again.
Environment.
Participants' physical and social environment also anchored them to a particular bodily experience following their stroke. In particular, the physical environment had a pervasive effect on participants' experiences of their body after stroke. Physical surroundings influenced how participants experienced their body and how effectively they executed physical activities such as walking. For example, Michael drew comparisons about what it felt like to walk in the hospital setting versus his own home:
Right, you get around at the hospital in a certain way, you know walking and things like that, and the wheelchair. You get home, and it was a struggle to get up the steps, a struggle to walk in the passage even with the walking stick.
Michael's home, at least initially, highlighted the differences in his body compared with before his stroke, which had become difficult and effortful to move. Like many participants, Michael stated this was a “learning experience” and alluded to his eventual mastering of how to move more freely within his home. Many participants related their confidence in their body being directly influenced by their environments, including the rehabilitation environment (staff and the daily routine of inpatient facilities) and their social environment, which included family and friends. For example, Michael drew the comparison of how he felt walking with one of the hospital physical therapists compared with at home with his wife:
When you've got people walking with you, some people are very much easier to walk with. And, er, one of the [physical therapists] was sort of always wanting you to walk with your hand up and do things that were unnatural, whereas others walked along with you, and you feel comfortable, and it's a lot better. So my wife's a registered nurse, which is, well, she's brilliant. She'll walk behind and in what I call “truck and trailer.” And just it's a matter of balance more than anything, er, the fact of security, just a hand barely on the hips, you hardly feel it, but it just gives you that confidence.
The unfamiliar experience of walking with the physical therapist appeared to exaggerate Michael's feeling of bodily strangeness. Conversely, he felt “comfortable” and “better” when walking with his wife, who, although still providing some physical support, allowed walking to feel “easier” and more natural for him. Thus, the normalcy of participants' bodily experiences in certain environments appeared to anchor them in a more cohesive, familiar embodied experience.
Discussion
This study aimed to explore the embodied experience of stroke when people leave the hospital and offers one interpretative theory to describe the dynamic relationship between sense of body and sense of self for 7 people after stroke. Our account of these individuals' experiences may provide further guidance for physical therapists when developing rehabilitation interventions and suggests that physical therapists should not consider rehabilitation of the physical body in isolation after stroke.
One implication of the findings from this study is that people's embodied experiences during interactions with health care professionals can have as much to do with how therapists deliver therapy as with the content of that therapy. For instance, simply instigating repetitive sit-to-stand exercises to retrain balance and lower limb function may satisfactorily deal with the physical aspects of a person's stroke, but leaves his or her subjective experience of hemiplegia unaddressed. This subjective experience may include (to give a few examples) distress, shame, curiosity, confusion, or disassociation and may contribute to how individuals conceive of themselves as people, how they relate to their poststroke bodies, and thus how they engage or do not engage in rehabilitative interventions or everyday activities after returning home.
For physical therapists, this embodied experience means investment of further time and energy in active listening practices to better support people through this physical transition. It also potentially means incorporating higher-level goals (eg, life goals)28,29 to link physical rehabilitation into recovery of self-identity and personhood after stroke, rather than solely focusing on goals related to physical movement (ie, focusing on wellness rather than illness).30
Another possible avenue for physical therapy intervention in terms of embodiment is in the promotion of people as experts of their own bodies and the nurturing of body mastery. This idea overlaps with the notion of “embodied intelligence,” which can be described as the body itself being “knower and interpreter,”31(p40) and is promoted through body listening, described in a variety of chronic health conditions, as well as in healthy individuals.31,32 This awareness can be facilitated by physical therapists to enhance practical knowledge such as how to manage fatigue or compensate for altered sensation. Furthermore, this recognition of people being experts in their own bodies empowers and promotes a person-first approach to stroke rehabilitation.33–36
Problem-focused strategies, such as relearning physical skills, exercising, taking risks to achieve an activity, and making modifications to activities, have been shown to aid restoration of a physical and social sense of self and could be considered to already be the essence of physical therapist practice.20,37 However, the more emotion- or cognition-focused forms of coping (eg, redefining core ideas of self, re-evaluating norms and values, and re-evaluating reality)20 are currently not considered a core part of the scope of physical therapist practice, but perhaps should be.38 Although we are not advocating that physical therapists become counselors, we are suggesting that our work as physical therapists is incomplete if we avoid discussing or confronting such experiences that can “anchor” or “de-anchor” our patients' emotional and cognitive connection with their bodies.
Findings from our study reinforce and further advance understandings of embodiment after stroke, which potentially contribute to the continued development of physical therapist practice in this regard. For instance, our findings indicate that bodily experiences closely relate to and influence a person's sense of self after stroke, as previously described.6,10,14–16,39 This study also is consistent with past research where people reported that their bodies felt strange or foreign, effortful and unpredictable, after stroke.6,8–10,17,30 However, in addition, this study suggested that the relationship between body and self after stroke is not static, but rather exists in a state of flux between divergence and cohesion, both at different points in time and over time. Indeed, the experience of stroke can challenge people's own perception of the relationship between their body and their self after stroke. Furthermore, the relationship between body and self, as expressed by participants in this study, was idiosyncratic—evolving temporally and contextually. It is possible that this experience is particularly profound during the period of transition from the hospital to the home, which other authors8,18,33 have previously described as a challenging time during recovery from stroke.
Another contribution of this study is consideration of the anchors involved in helping people make sense of their embodied experience after stroke. These anchors have included the environment, people's attitudes, and people's knowledge. The model arising from this study highlights that people's experiences after stroke do not occur in isolation from external influences. Instead, other individuals, including physical therapists, can influence (both positively and negatively) people's experiences of their bodies after stroke. Physical therapists, for instance, can help people make sense of their bodily experiences after stroke (as described above), linking these experiences and sensations to knowledge of neuropathology and physiology. Physical exercise and activity provide opportunities for people to address problems with interoception and body ownership, at the same time as physical therapists are rehabilitating activity limitations and impairment of body function.
In terms of the robustness of the ideas emerging from this research, we believe we reached data saturation of the main themes in this study (the notions of divergent body-self, cohesive body-self, and anchors) and for their constituent subthemes. This conclusion is consistent with other authors' work, which has suggested that researchers can identify meta-themes in a study after as few as 6 interviews—provided the data are of sufficient depth.40,41 However, there may be additional contributing factors underpinning our main themes that we did not identify due to the small number of participants. Such factors might include culture, age, and sex, which other authors4,9,16,42–44 have linked to experiences of embodiment. A further limitation was the temporally isolated view of participants' embodied experience. A more longitudinal study, following participants over 6 months or longer, may provide further understanding of how embodiment changes over time after stroke.
Future research should examine the effect physical therapists have on a person's embodied experience after stroke, with or without additional strategies to augment such interactions. The first steps to this research may include the selection or adaptation of tools to measure physical self-concept and methods to better share psychosocial practice skills from other professions. In developing understanding of the embodied experience and how we, as health care professionals, are influential, physical therapists may be able to move toward a more encompassing view of people's bodily experience after stroke.
In conclusion, the embodied experience of stroke clearly extends beyond the physical body, yet embodiment remains tacit and hidden in physical therapist practice and models. This study offers a theoretical model of the embodied experience of stroke 1 month after leaving the hospital. It also provides an important basis from which other studies exploring embodiment, both in stroke and in other health conditions, can build.
Appendix.
Interview Schedule
Footnotes
All authors provided concept/idea/research design, project management, writing, and data analysis. Mrs Timothy provided data collection. Dr Levack provided facilities/equipment and institutional liaisons. Dr Graham and Dr Levack provided consultation (including review of manuscript before submission). The authors acknowledge the individuals who kindly gave their time and openness to participate in this study. They also thank Dr Jean Hay-Smith for her review of the work.
The University of Otago Human Ethics Committee (Health) gave approval for this study to be conducted (Reference: H13/060).
This research was supported by the Canterbury District Health Board, New Zealand.
↵* In New Zealand, this idiom means “very good” or “excellent” rather than “well behaved.”
- Received August 9, 2015.
- Accepted April 14, 2016.
- © 2016 American Physical Therapy Association
References
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