illustrate that the mother has recovered; in another narrative, the same event was used to demonstrate ... an effect on how stroke rehabilitation is experienced.
Recovered or Recovering: Negotiating Rehabilitation After Stroke Maria I. Medved1 1
University of Manitoba, Winnipeg, Manitoba, Canada
The role of narrative discourse has been increasingly recognized as crucial to all partners involved in the rehabilitation process after acquired brain injury. Particularly within the family, narrative offers an experiential space for meaning-making. To better understand this joint meaning-making process, a narrative-discursive methodology was used to analyze a family’s conversation that took place 1 year after the mother had a stroke. In one narrative, a particular incident was used to illustrate that the mother has recovered; in another narrative, the same event was used to demonstrate that the mother was still recovering. The 2 narratives are associated with different rights, responsibilities, and rehabilitation trajectories. To holistically understand the rehabilitation process, health professionals need to be aware of the often hidden narrative meaning-making processes that take place within the family. Key words: acquired brain injury, discourse, family, narrative, qualitative, recovery, stroke
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n 1988, Sharon Kaufman1 noted that there was an odd mismatch in knowledge concerning the trajectories of stroke rehabilitation. Despite an abundance of clinical information, little was known about the extent of recovery over time. Likewise limited were data regarding rehabilitation efficacy and the effect of procedures or activities on neuropsychological impairments. Because there were so many unknowns, medical judgments regarding recovery were unavoidably viewed as lacking in authority. This situation has not substantially changed.2,3 The long-term prognosis for stroke patients remains uncertain, and this is particularly true for individuals with primarily mild-to-moderate neuropsychological deficits.4 Beyond the generic observation that most recovery occurs in the first 2 years after stroke, there are no obvious rehabilitation clues that indicate an unambiguous recovery path. This ambiguity has an effect on how stroke rehabilitation is experienced and understood and, ultimately, on medical outcomes. For this reason, Kaufman1 advocated viewing rehabilitation after stroke holistically and stated that it is essential to take into consideration the “first person perspective” of people dealing with strokes. Others have echoed this call.5 First-person accounts allow us to observe how individuals interpret a patient’s functioning and what this might mean for recovery. The patient, for example, might frame her ability to complete a particular task as inadequate, considering herself
still in a rehabilitation phase, hoping for a full recovery. At the same time, a health professional or family member might see the same performance as signifying that a recovery plateau has been achieved, indicating that further recovery is no longer attainable, necessary, or perhaps realistic. In everyday practice, such interpretations by different members of the “rehabilitation triad” (professionals, patients, and their families) are based on complex meaning-making processes in which the boundaries between “recovered” and “recovering” are fluid. How patients are discursively positioned – that is, how people are situated with respect to their rights and duties or what they may or may not do6 – in relation to recovery clearly has consequences for rehabilitation. Optimally, the triad shares the same assessment or viewpoint, but more often than not, members see things differently. This, in turn, serves to increase the complexity of an already difficult situation. The ambiguous recovery terrain the rehabilitation triad must navigate remains similar today to the period in which Kaufman’s1 paper was written. What has changed is the advancement in our understanding of the power of communication and, principally, narrative to shape and reflect Top Stroke Rehabil 2011;18(1):47–51 © 2011 Thomas Land Publishers, Inc. www.thomasland.com doi: 10.1310/tsr1801-47
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people’s experiences and understandings of illness and rehabilitation. Narrative is one of the primary means through which we make sense of our experiences. It offers an experiential space in which we weave the threads of personal and medical concerns together, a place in which these threads are bound into our life stories to define what an injury or disease might mean for us and what can be done about it.7–10 The role of narrative has been increasingly recognized as crucial to all partners involved in the rehabilitation process. Mattingly11 investigated how health professionals give meaning to patients’ behaviors, achievements, and dysfunctions in what she calls “healing dramas.” Reflecting clinicians’ subjective thoughts as they “imagine recovery,”12 these dramatic stories are molded into narrative via “therapeutic emplotment” – a means through which events are arranged along a therapeutic plotline. In establishing a link between everyday rehabilitation activities and recovery trajectories, these narratives can evoke a range of understandings and emotions, from the hope of additional recovery to the despair of nonrecovery in clinicians, family members, and patients.13 The healing dramas constructed by health professionals are predominantly important during the acute care and rehabilitation phases of recovery. Once active treatment is complete, however, the primary responsibility of everyday therapeutic emplotment is left to families and patients. In other words, once patients return home, they and their families (or anyone that patients might be in regular contact with) must decide what the often indistinct events or “symptoms” might mean. This is exceptionally challenging in the context of cognitive impairments. Do the events or symptoms fit into a plot that suggests recovery has already occurred or one that indicates more recovery is to come? How is recovery to be defined? As already pointed out, there is no unequivocal answer. Members of the triad (or, perhaps more accurately now, the dyad) are left to construct a rehabilitation narrative. In everyday life, families typically are immersed in an array of talk, comments, and reflections. Certain topics are fleshed out and elaborated, others are minimized or ignored. In countless acts of co-narration, storylines are negotiated, accepted, and rejected. To understand the processes of joint
construction of rehabilitation narratives, it is vital to explore the manifold social practices involved in meaning-making. The neuropsychologist Alexander Luria14 referred to this as patients’ “lived reality.” It is here that the nuts and bolts of identity re-construction, courses of action, and future possibilities take shape. In what follows, I present a brief exchange from a family trying to negotiate the meaning of an event (the “mall incident”) for the recovery of one of their members who had suffered a stroke. Recovered or Recovering Prior to her stroke, Ms. P, a 56-year-old divorced mother of 2 boys, aged 13 and 16 years, worked in a bank. She was admitted to hospital for a ruptured aneurysm of the right anterior communicating artery. Since her aneurysm, she has been unable to return to work and mostly stays at home. She primarily suffers from attention and memory impairments along with headaches and occasional dizziness. Ms. P’s brother and sister assist her with many of her activities of daily living (eg, making sure the freezer is stocked). The interview, which took place 12 months after her stroke, is one of a series conducted with Ms. P and her family. The predominant thread throughout the discussion was an effort to figure out what going to the mall, an event occurring a few days prior to the interview, meant. One afternoon, Ms. P decided to go shopping for a dress to wear at her son’s upcoming graduation. She boarded public transit to the mall (about 20 minutes away) and did not return until late in the evening, about 6 or 7 hours later. What Ms. P did during the time she was gone remained unclear to her family. She was unable to provide any specifics, other than she got lost when trying to return home (and she did not return with a dress). Ms. P did not leave a note to tell her family where she had gone, she did not take her cell phone, or telephone home during her excursion. Understandably, her sons and brother were extremely worried and on the verge of calling the police when she returned. Just prior to the excerpt below, which captures the tenor of the interview, the researcher asked whether Ms. P regularly goes out on her own.
Negotiating Rehabilitation After Stroke
Ms. P:
When the therapist [Ms. P’s occupational therapist] comes by, she takes me out for appointments and stuff. Sometimes the kids will take me, it depends on what it is.
Oldest son (OS):
[Shakes his head while Ms. P is speaking] She’s like independent now. But I mean, after the mall I told her “You shouldn’t be doing that” but now, I mean, like, I actually want her to go out by herself. I mean, she can do it. She goes to the doctor by herself, she goes to the bank by herself, she goes to the mall herself. So she’s saying that people have to take her but she goes by herself all the time.
Ms. P:
Oh, I can do things for myself. It depends on what I have to do. But there was that incident (referring to her shopping trip).
Youngest son:
OK, well, I think she’s, she is 95% better. Right? But she’s not how she was before she got sick, but she is basically the same, nothing has really changed...She can cook all the time now. She can clean...
Ms. P’s brother:
My take on this is that there is no point in me getting her upset and letting her have it because I want her to go out. I want her to take that trip to venture out because that’s a learning exper[ience].
OS:
[It’s like before] she had the aneurysm and it’s like your mom is home. Just like your mom is home full-time now. I like it this way better than before when she was working cause you know, I have my Mom home and I have food when I come home from school.
Ms. P:
I do things on my own, like I cook, I clean. But I can’t do much. I think I have to just take one day at a time and things will hopefully get easier and easier.
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As the family conversed, it became apparent that the members attributed different meanings to the mall event and used it to support different stories. Although the oldest son began by saying that Ms. P shouldn’t have gone to the mall on her own, he suddenly shifted his view; rather than being a marker of his mother’s poor judgment or memory problems, the incident became an illustration of his mother’s recovery (“she goes to the mall herself”). The younger son demonstrated a similar pattern; he said his mother is “not how she was before she got sick” but he quickly altered his view to say she is “basically the same,” in fact “95% better.” He, along with the oldest son, both vigorously buttressed the recovery argument with further evidence emphasizing that Ms. P is also capable of cooking and cleaning. Ms. P’s brother offered another interpretation. He suggested that there is still some learning his sister needs to do, but the older son interrupted this story. Ms. P’s story about still needing support was challenged in a similar manner at the beginning of this excerpt. Throughout the interview, Ms. P’s brother seemed to be hesitant about what to think. Ms. P herself seemed unclear about the entire meaning of the mall incident. On the one hand, she suggested that she can go out “depending on what it is.” On the other hand, she remarked that she needs to take “one day at a time,” implying her healing is not complete. It is easy to conjecture what motivations might be underlying the sons’ desire to put forth their version of their mother’s recovery narrative. However, the important point here, at least in terms of healing, is that their version of recovery is translated to represent an absolute “low level of functioning.” This interpretation leaves Ms. P with no room to develop further. The narrative may also be gendered: as long as Ms. P can cook, clean, and go to the mall, she is fine, with no mention of her possibly returning to work. Although Ms. P seems to have complied with this storyline throughout most of the interview, there were moments in which she (and to a lesser extent her brother) offered an alternative version, one in which she retained some space for further recovery (“things will hopefully get easier and easier”). Oddly enough, during the conversation, Ms. P was awkwardly left to point out her failures and
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limitations to reinforce her story. Even though she was the one with the “memory problems,” she was the “rememberer” of events others in the family seem to forget. Narrative and Discourse Brain injury can affect the cognitive and communicative abilities that undergird one of the most powerful meaning-making tools we have, narrative. For this reason, as Goldstein15 pointed out, other people are exceptionally important in order to “bridge the gaps” left by neuropsychological changes. The social activity of telling, receiving, and responding to stories is even more essential for the emergence of narratives in which the extent and limits of rehabilitation and recovery are navigated. Further, it is often through these narratives that a new sense of selfidentity is formed. In bridging the cognitive and communicative gaps of narration, family members may serve as a “vicarious voice” for the patient.16 Yet family members are not disinterested observers. After a member of the family has had a stroke, all family members have to come to terms with a new reality that may include sadness, fear, relief, hopes, and wishes for themselves and the patient. All of these feelings and expectations can lead family members to attempt to shape the patient’s narrative in a specific way. An authoritative medical voice regarding cognitive deficit recovery trajectories is often lacking in the initial year following an acquired brain injury, leaving parents, families, and, in some measure, health professionals jostling over the “boundaries of authority,”1 with each claiming different rights to the rehabilitation story. There are multiple possible readings of the mall accident exchange that relate the ostensibly “small drama” of everyday healing to the “big” issues of care, self-identity, and independence. In one version, the mall incident narrative was used as evidence to illustrate Ms. P’s almost total recovery – which would set the bar of recovery seemingly quite low as it frames her as being almost back to her prestroke self despite her ongoing deficits. This reading asserts no further skills are necessary for her to recover, which would imply that she no longer needs additional attention, support, or care.
In this view, Ms. P’s status as a sufferer is denied or, at least, downplayed; in a sense, she is deprived of her “rehabilitation identity.” In another reading, the same story is presented as giving Ms. P the independence to carry out whatever activities she sees fit. Ms. P, for her part, hesitantly resisted this storyline and offered a counter-narrative, as vague and tentative as it may have been. In this narrative, the mall drama was brought into discursive play to illustrate that she is still recovering. Resisting any foreclosure of her recovery, she retained the right to her rehabilitation identity and thus to continued care from her family. Furthermore, Ms. P positioned her independence as less than optimal. This likely reflects her lived experience of being unable to easily accomplish activities such as going shopping or returning to work. Although Ms. P is characterized as capable in the dominant storyline, her capacity to “accurately” construct a rehabilitation narrative was simultaneously challenged by her family who ignored and overrode her discursive moves. In doing so, they interfered with her narrative agency. This again raises the query, especially pertinent to individuals with brain injuries, of who gets to decide which narrative is the dominant version – the version on which decisions of possible actions will be made. When others are reluctant to cooperate in the construction of a particular narrative, even people without neuropsychological challenges can find it taxing to put forward alternative narratives, never mind individuals who need, as Randall17 puts it, “narrative care.” In closing, I would like to underscore that narratives are not finished products but are the result of dynamic discursive processes that are embedded in ongoing social and material activities. We do not know how the narratives of this family will look in 1 month, never mind in 1 year. Furthermore, we simply do not know whether Ms. P has reached the upper limit of her recovery, as contentious as that concept may be, or to what extent she will continue to recover. What we do know is that the trajectories of rehabilitation and recovery are viewed in different ways. Depending on which narrative meaning-making lens is used, we see co-narrators
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positioned differently in terms of rights and duties, limits and potentials. After the bulk of intensive rehabilitation is complete, the construction of narratives through subtle discursive exchanges is left primarily to stroke patients and their families. As this construction process is largely hidden from practitioners and researchers, its importance is often not appreciated, never mind therapeutically addressed. Even though discursive processes of meaning negotiation may be subtle, their influence on rehabilitation may be large. As
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Kaufman1 pointed out, it is essential to take into consideration first-person perspectives of people dealing with acquired brain injury if we are to holistically understand the recovery process. Acknowledgments I thank the family members for their willingness to participate in this study. This research was supported by a Manitoba Medical Foundation Services grant.
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9. Hydén LC, Brockmeier J. Health, Illness and Culture: Broken Narratives. New York: Routledge; 2008. 10. Medved MI. Remembering without a past: a study of anterograde memory impairment in individuals after neurotrauma. Psychol Health Med. 2007;12:603–616. 11. Mattingly C. Healing Dramas and Clinical Plots: The Narrative Structure of Experience. New York: Cambridge University Press; 1998. 12. Stineman MG, Rist PM, Burke JP. Through the clinician’s lens: objective and subjective views of disability. Qual Health Res. 2009;19:17–29. 13. Antelius E. The meaning of the present: Hope and foreclosure in narrations about people with severe brain damage. Med Anthropol Q. 2007;21(3): 324–342. 14. Luria AR. The Making of Mind: A Personal Account of Soviet Psychology. Cambridge, MA: Harvard University Press; 1979. 15. Goldstein K. The Organism: A Holistic Approach to Biology Derived From Pathological Data in Man. New York: Zone Books; 1995. [Original work published 1934] 16. Hydén LC. Broken and vicarious voices in narrative. In: Hydén LC, Brockmeier J, eds. Health, Illness and Culture: Broken Narratives. New York: Routledge; 2008:36–54. 17. Randall WL. The anthropology of dementia: a narrative perspective. Int J Geriatr Psychiatr. 2009;24:322–324.
