Communicating with the Severely Brain-damaged Adult II. Establishing Communication Ullabeth S. Larsson, Claes Nilholm & Roger Säljö - PDF

Communicating with the Severely Brain-damaged Adult II. Establishing Communication Ullabeth S. Larsson, Claes Nilholm & Roger Säljö ABSTRACT: The article reports an exploratory study of stretches of interaction

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Communicating with the Severely Brain-damaged Adult II. Establishing Communication Ullabeth S. Larsson, Claes Nilholm & Roger Säljö ABSTRACT: The article reports an exploratory study of stretches of interaction between one brain-damaged adult, Michael, and two professionals, Karen and Lynn. The issues explored concern how communication is established and maintained in interaction with a person whose ability to contribute to interaction is highly limited. A concrete problem for the health care staff in this setting is how to constitute the interlocutor as a partner in the dialogue and what sorts of contributions that should be validated. The establishment and maintenance of a shared focus of attention in the interactional sequences used as illustrations are extremly fragile processes. Questions asked and claims made are left suspended or are brought home by the care-giver herself. Seemingly simple responses and signals, such as smiles or a move of the index finger, acquire meanings and move the dialogue forward simply because their meaning potential is confirmed as a communicative response. The sequences also show how the care-giver relies on a shared history with Michael when communicating and when evaluating his non-verbal contributions. This implies that the development of communicative patterns becomes extremly dependent on continuity of interaction over time between the care-giver and the brain-damaged person. 109 Introduction In Sweden, as in many other countries, major changes have taken place in the rehabilitation and care of severely brain-damaged adults during the last decade. Following medical rehabilitation, these people were previously referred to wards primarily geared towards the long-term care of elderly people. In most instances, these institutions had very little to offer in terms of resources and rehabilitation programmes suited to the needs of severely brain-damaged individuals. However, the normalization movement encompassing such diverse groups as, for instance, the mentally retarded, the demented and people with chronic mental illnesses, has affected the care of severely brain-damaged adults as well. Thus, opportunities for independent living and meaningful daily activities have been demanded for the severely brain-damaged people in very much the same way as has been the case for the other groups. This development is reflected in and promoted by the new legislation in 1986 (SFS 1986:565 Sv: Förordningen för särskilda omsorger [the Social Welfare Act for the Mentally Retarded and Others]), which states that individuals with acquired brain damage have the right to demand special services similar to those provided for the mentally retarded, i.e. resources for counselling, for having a contact person, for productive daily activities and housing facilities suited to their needs. Of course, there is an inherent paradox in these cases of social change. Thus, groups that are defined as dissimilar by the fact that they are not able to live an independent life and take care of themselves, are at the same time supposed to be provided with opportunities to live as normal a life as possible. Following this line of reasoning, the task for social agencies is in some sense to create independence for the dependent, normality for those previously considered deviant and, perhaps, the deinstitutionalization of the institutionalized. One point must be made explicit in this connection. We are not adopting a normative stance suggesting that the present tendencies in social work and legislation are not, in one way or the other, beneficial for most of the people involved. On the contrary, the situation for many people with severe brain damage seems to have improved greatly during the last decade with the emergence of new forms of care. Thus, specific institutions addressing the needs of these groups have appeared. A new ideology of care is associated with this change. Today, people with acquired brain damage have the right to demand stimulating activities without simultaneously being required to prove that these activities will lead to progress. These demands are being grounded more in terms of their right to quality of life. For some years now, more resources have been made available to this group, both in 110 terms of staff density and the training and background of the professional groups involved (SFS 1986:565). In these senses, new and slightly modified activity systems (Engeström, 1993) have emerged encompassing new work methodologies and new modes of construing the needs and rights of people with severe brain damage. Communication is considered crucial in the ideology of the new movement. Attention to the communicative problems and resources of the brain damaged adults and systematic training of different types of communication are considered vital for the rehabilitation process. There are, however, few scientific studies addressing the issue of communication with severely brain-damaged adults. There are arguments grounded in normative assumptions concerning the importance of communication and the proper management of interaction with this group. Yet there are few, if any, studies of concrete communicative practices and of the progress made by individuals in response to therapeutic measures. The present paper is an attempt to begin addressing some of the issues involved in the very difficult task of accounting for some of the dynamics of interaction under the constraints characteristic of interactional events in which these people are present and participate (cf. also Larsson, Nilholm & Säljö, 1992). The purpose of the study The overriding purpose will be to present some preliminary observations of interactions between caregivers and one adult with severe brain damage in order to illustrate some aspects of such communicative events. More specifically, we are interested in how these individuals, with a limited capacity for communication, are constituted as partners in interaction. Since communication involves mutual responsibilities (such as, e.g., turn-taking and negotiation of meaning; cf. Rommetveit, 1973, 1990) for the progress of the activity, these responsibilities have to be renegotiated in instances where one of the interactional participants for some reason is unable to fulfil his/her conversational role. The presence of two individuals with unequal resources for interaction in a shared social activity, requires decision-making regarding how to conduct verbal interaction and a considerable amount of thematic awareness regarding what can be expected of the handicapped person and what communicative opportunities that s/he should be provided. In a sociocultural perspective (Wertsch, 1991), the encounters we are studying have to be understood as parts of practices that are quite complex in nature. They are situated in institutional settings, and as such 111 the encounters form parts of social practices that produce and reproduce certain kinds of health care. Thus, the staff have responsibilities for habilitation and for provision of care. At the same time, the encounters are highly personal in nature, and they entail close physical and psychological contact between the persons interacting. The concrete problem for health care staff in our studies concerns, among other things, how to constitute the interlocutor as a partner in the dialogue and what to consider as contributions to the joint activity. This latter issue thus relates to the issue of what kind of agency (Wertsch, Tulviste & Hagstrom, 1993) that is ascribed to a partner whose abilities to contribute to communicative projects are far from clear. We will suggest that these interactional problems are dealt with in different ways, but that they imply attempts to maintain some of the features of normal communication between partners more equal in their abilities. However, first we would like to provide a background to these interactions in terms of the settings and persons involved. Background Recently, a two-year developmental project was undertaken in a Swedish community in order to create meaningful and potentially developing daily activities for severely brain-damaged adults. When we became involved in the project, we initiated video-recordings of several of the activities undertaken in order to document the communicative practices in context. The focus in the present paper will be on interactions involving Michael (the handicapped person), Karen and Lynn (staff). At the age of 17, Michael was involved in a car accident. He has since suffered from severe brain damage. He does not talk or communicate with any sign system, even though some argue that he, at times, provides signs for yes and no. He sits in a wheel chair and is severely spastic. Michael is considered by most of the staff to have a comprehensive understanding of events and to initiate interaction by means of sounds and grabbing. There are differences in opinion regarding whether Michael can sustain and terminate interaction or not, but about half of the staff suggest that he is capable of this. After the accident, Michael spent several years in a longterm ward. Rehabilitation was subsequently terminated as Michael was not considered to be making any progress. About six years after the accident, a remedial teacher, Karen, became interested in Michael. She was convinced that the methods she used in her work with the mentally retarded would be beneficial to Michael, and she started to work with him on a regular basis. Because of her work with Michael and, later, with other persons with severe brain damage, she became quite well-known. There is general agreement that her work with Michael was successful 112 and helped to bring him out of a state of apathy. Her work was based on a conviction that everyone wants to communicate and that it is important to wait for signs of communication. By training and stimulation, brain functions will improve. Karen has not been involved in Michael s training during the last four years. Lynn has a training and a professional background as an occupational therapist and she has been involved in Michael s training at the activitycenter, where our study was carried out (cf. Larsson, Nilholm & Säljö, 1992). Methods The data for the present article derive from two different bodies of material or, more precisely, from two video-recordings. The first recording was made ten years ago and the second one, as was mentioned earlier, was made during the studies at the activity-center carried out by us in On the first video tape, the discussion will focus on some of the interactions involving Karen and Michael that were video-taped a decade ago. The video tape we have used for the analysis was not recorded for research purposes but, rather, was intended as a presentation for a wider audience, for example, politicians, in order to provide a picture of the the needs of this group of handicapped persons. In addition, these video films have served as information and training material in different contexts. However, our interest in starting to analyse these tapes was triggered by the fact that they are held by many to illustrate what can be seen as instances of good practice with respect to the training of brain-damaged persons. Further, and to allow for comparison and contrast that can generate ideas for continuation of the analysis, we decided to scrutinise a video tape of an interaction involving Michael and Lynn, an occupational therapist who was working at the activity centre, when we carried out our study, in 1990 and Briefly, the second video tape is from the study we have made of five handicapped persons between 24 and 43 years of age. They have been video-taped in dyadic interactions in different situations at an activity center and in the home of the handicapped person. The data were collected on two separate occasions, in 1990 and 1991.The caregivers are an occupational therapist and assistant nurses (cf. Larsson, Nilholm & Säljö, 1992). 113 Thus, we will present three short stretches of interaction from these two sources recorded in similar types of situations. Two stretches are from the videotape recorded ten years ago and one is from our study carried out in We will not be able to present any final results but, instead, we will present some tentative observations regarding the nature of these interactions and raise some issues for discussion and try to connect these issues to the problems of the establishment and maintenance of intersubjectivity (Rommetveit, 1990) under these specific circumstances. Interaction between Michael and Karen The first excerpt is taken from the video tape called Quality of life - does it apply to the handicapped with severe brain damage? (in Swedish; Livskvalitet; gäller det för handikappade med svåra hjärnskador?) produced by the Media Center, University Hospital, Linköping 1. In this first stretch of interaction (see excerpt A), Karen shows a picture of a banana to Michael and then gives him a banana to eat. (Excerpt A) Interaction between Michael and Karen Michael Karen = (K) is a remedial teacher ( Michael ) indicates during what part of the utterance Michael is doing something (Text in bold) indicates Michael s activities (short pause = 1 second; pause = 1 second) The sequence (A) involving interaction relating to a picture of a banana (initially, only Michael can be seen on the video, he sits with his head to one side). Karen is sitting very close in front of Michael. Michael usually holds his head/face turned towards his left shoulder. He has to make an effort to turn his head forward. 1a K: well, Michael (Michael moves his head forward a bit ( Michael )) 2a K: I had a picture here 3a K: here, I have a picture, Michael 1 We have been given the permission to use this video film for our analysis. 114 (cont. excerpt A) 4a K: you re to look at the picture now (Michael turns his head away again ( look )) (K brings the picture closer to Michael, Michael turns his head towards the picture) 5a K: can you do it? (Michael continues to look at the picture) (K adjusts it) 6a K: can you see what that is? (Michael turns his head away slightly and opens his mouth, begins at ( you see ) and finishes) 7a K: ye-es (laughing) what was it in the picture? (at ( yes ) Michael turns his head slightly towards the picture after opening his mouth and then turns his head and eyes away again, begins to smile following K s laughing; he looks briefly at the picture again, looks again at the picture ( what was it ), Michael looks away again ( picture )), 8a K: you could see what it was in the picture Michael looks at the picture again ( what it was ) but looks away again (K had moved it), Michael s smile fades, from ( it was to picture ) 9a K: what should it be used for? (K moves the picture closer to Michael) (Michael looks 10a K: you showed that straight away towards the picture 11a K: can you show it once more? again, he turns his head away) 12a K: what is that, Michael? (K points to the picture, Michael looks at the picture ( that )) 13a K: what should one do? (Michael looks towards the picture ( do ); possibly, he shakes his head) Initially, Karen requests Michael s attention (utterance 1a). In addition to showing the picture to Michael, Karen then verbally introduces the picture in two consecutive utterances (2a and 3a) about 2.5 seconds apart. In both these utterances, she stresses the word picture. 115 After less than one second, she then tells Michael you re to look at the picture now (utterance 4a), stressing the word look. She also moves the picture closer to Michael, who looks at it at the same time as she repeats her request using a different verbal formulation (utterance 5a). Karen then asks Michael if he sees what that is (stressing that ) (utterance 6a). At the same time, Michael turns his head away and opens his mouth seemingly smiling. Karen laughs and seems to partly accept this as an answer but puts an additional question to confirm her interpretation (utterance 7a). She then confirms that Michael could see what was in the picture (utterance 8a), asks a question concerning the use of the object (utterance 9a), again confirms Michael s reply and points out how quickly he replied (utterance 10a). Then she urges Michael three times through different formulations to produce an additional response by asking a) for a repetition of the one he, according to her interpretation, provided earlier (utterance 11a), b) for the word referring to the object (utterance 12a) and c) for its use (utterance 13a). During this sequence, in which Karen tries to get Michael to contribute with additional responses, his smile fades away and he alternates between looking at the picture and looking away. This pattern of communication is, of course, at one level strongly dominated by Karen, who makes several initiatives in terms of questions and requests. Yet this dominance must be understood differently from interactional dominance in other contexts (Linell & Luckman, 1991). What Karen does is that she uses her own initiatives to continuously provide slots into which Michael can contribute with a move. She thus systematically creates opportunities for Michael to confirm through nonverbal means that he knows that the banana is an object that can be eaten. Furthermore, only specific responses on the part of Michael are accepted as contributions. For instance, he has to look at the picture and/or open his mouth in particular ways for Karen to validate his actions and consider them as contributions and steps forward in the progression of the dialogue. Several other of Michael s forms of behaviour, particularily with respect to his pattern of looking in the last part of the sequence, are not accepted as valid contributions by Karen, even though they might perfectly well have been considered as such. This indicates that Karen, who shares a long history of communication with Michael, has established some sort of threshold for evaluating responses provided by Michael that she is willing to see as signs of intersubjective understanding. These thresholds might be construed as indicating the level and nature of contribution that Karen considers within reach for Michael and that she has decided to establish as a minimum level in order to consider him involved. 116 A similar pattern is visible in the next sequence, excerpt B. (Excerpt B) Interaction between Michael and Karen Michael Karen = (K) is a remedial teacher ( Michael ) indicates what part of the utterance (word) Michael is doing something (Text in bold) indicates Michael s activities (short pause = 1 second; pause = 1 second) The sequence (B) involving interaction concerning the eating of a banana (at the beginning, only Michael can be seen on the screen). Karen is sitting very close in front of Michael. Michael usually holds his head/face turned towards his left shoulder. He has to make an effort to turn his head forward. 1b K: You re going to get a banana (Michael looks straight ahead ( get )) 2b K: what is this, then? (Michael looks straight ahead, turns his head to the side and opens his mouth, closes it when he is given the banana) 3b K: ye-es, you could at least taste a bit 4b K: oh look, we ve squeezed it so it s gone a bit brown, look here, Michael (Michael looks straight ahead ( squeezed it ), looks at the banana) 5b K: can you see that I ve squeezed it, I m taking that away (Michael looks straight ahead ( it )) 6b K: I don t think it tastes good (Michael looks straight ahead) 7b K: I ll give you some first (gives the banana to Michael) 8b K: so 9b K: so that you can take some yourself (Michael turns his head forward) 10b K: can you hold the banana in your hand yourself? (Michael looks ahead ( hand )) (Michael turns his head away) 117 (cont. excerpt B) 11b K: can you open your hand, Michael? 12b K: Mi-ichael! (Michael s left hand is lifted away by K) 13b K: can you open your hand now? (Mic
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