Influenced by the disability movement's strivings for citizenship and empowerment (e.g. Crewe & Zola 1983, Oliver 1990, Barton 1993) and in line with many disability policies in the Western countries (Drake 1999), many professional social services claim to adopt principles of client empowerment by offering support that is termed “family-centred” or “person-centred” (e.g. Kim & Turnbull 2004). We will report results from a study of one such recently founded practice in the Swedish rehabilitation sector. This practice has emerged in the context of “habilitation centres”, which are in most cases part of the regional health care system, i.e. a responsibility of each county. At these centres, the overall task of professionals in medical, social, psychological, and educational fields is defined as providing support and help to people who have been ascribed physical and/or cognitive limitations. Formally the services are regulated by the Health and Medical Services Act (SFS 1982:763) and to a certain extent by the Act Concerning Support and Service for Persons with Certain Functional Impairments (SFS 1993:387). Both laws emphasize the individual's right to self-determination, which is one of the goals of the national disability policy (Governmental proposition 1999/2000:79).
The user-centred practice is described as being based on teamwork (Sjögren 1996, Larsson & Nilsson 1999). The team meets at regular intervals and is composed of a person with disability, and/or his/her relatives, and representatives of different institutions somehow taking part in the life of the person with disability. The person with disability is, in the context of the practice, referred to as the “user”. The ambition is thus to let the user be “at the centre” to the greatest extent possible. Ideally, this means that the user is self-determining and, for example, selects team members and defines goals and needs for support (Sjögren 1996, Larsson & Nilsson 1999). However, this is associated with difficulties as, for instance, some of the users have severe cognitive disabilities and/or are very young. These users should be represented by persons closely related to them (op. cit.). This indicates that the concept “user-centred” should not be literally interpreted, but rather considered a sociopolitical ambition. The question is what “user-centred” may mean in practice. The guiding documents of the practice seem to present a well thought-out working model. For example, it is stated that in the beginning of the planning process the user's life situation should be mapped and a “contact person” should be elected. The contact person is expected to be responsible for the coordination of the services, for the notices to attend the meetings, and for the documentation. However, the organization of the conversations is not considered. How are the conversations organized in practice and which participants dominate them?
According to Linell (1990) “dominance in interaction is multidimensional; there are many different ways in which a party can be said to ‘dominate’, i.e. possess or control the ‘territory’ to be shared by the communicating parties. The territory, of course, is the jointly attended and produced discourse” (p. 158). This “territory” is sometimes referred to as the “discourse space” (Adelswärd, Aronsson, Jönsson & Linell 1987), which will be used in this article. Two dimensions of dominance will be considered. The first dimension is purely quantitative and concerns the amount of talk; those who talk the most dominate. The second dimension is qualitative and refers to topic control; those who introduce and maintain topics and perspectives on topics dominate (cf. Linell 1990 p. 158).
The aim of the article is to examine the discursive organization of “user-centred” team meetings. The meetings address users of different ages and with different kinds of impairments. We will focus on the quantitative distribution of the discourse space and thus on which participants dominate quantitatively, as well as on the topic control and thus on which participants tend to dominate qualitatively.
There are many studies addressing the implementation of policy guidelines within services intended for people with disabilities and their families. Most of the studies aim at developing the practices that best reflect the philosophies of user and family involvement within service sectors. These sectors include early intervention, rehabilitation for young people and adults, community services and special education. Many of the studies encompass whole planning processes (see Greasley 1995 and Gallagher & Desimone 1995 for brief overviews on different kinds of plans) or the overall service system within or throughout sectors. To a great extent indirect methods such as surveys and interviews have been used to collect data on preferences and perceptions of users, families and professionals (e.g. Able-Boone et al. 1992, McBride, Brotherson & Joanning 1993, Björck-Åkesson & Granlund 1995, Knox, Parmenter, Atkinson & Yazbeck 2000, Larsson 2000, Swain & Walker 2003). The results of these studies correspond to conclusions drawn by authors discussing the development of family-centred practices in early intervention in Sweden and United States since the 1980s. These all indicate that progress towards family involvement has been made but not to a satisfactory extent (Björck-Åkesson & Granlund 1997, Dunst 2000, Bruder 2000).
Some authors, whose studies we will summarize briefly, have made direct observations of planning processes including planning meetings. Minke and Scott (1993) investigated parent participation during Individualized Family Service Plan (IFSP) meetings within early intervention practices. The authors identified roles taken by parents and professionals. Different types of strategies, including those that were consistent, partially consistent, and inconsistent with family-centred intentions, were ascribed to professionals. Parents attained partial decision-making power, as staff members made some decisions themselves and simply presented goals to parents for approval. In another study, students with mental retardation were involved in person-centred planning meetings to a certain extent (Hagner, Helm & Butterworth 1996). In addition to the student, family members and different professionals participated in the meetings. Among other things, the authors conclude that the focus of the meetings clearly was on the students’ interests and opinions, but at the same time, their own views were sometimes ignored or reinterpreted. Moreover, the pace and tone of the meetings were sometimes dictated by others and most participation by the students consisted of answering questions, including requests to confirm what others suggested.
In similar meetings with participating students with various developmental disabilities, the types of participation of the students varied from active, controlling, and limited, to nonexistent (Whitney-Thomas, Shaw, Honey and Butterworth 1998). Behaviours of professionals and relatives, for instance their levels of abstraction of the discussion and their way of speaking directly to the student or referring to her/him in the third person, influenced the level of student participation. Finally, Thoma, Rogan and Baker (2001) conclude that none of the eight students with labels of moderate, severe, or multiple disabilities were active participants in transition IEP (Individualized Education Plan) meetings. One observation was that professionals spent much of the time providing information to parents and using technical jargon.
These observational studies point to professional control of the conversations, but the degree of this control varies and relatives seem to influence student involvement as well. Unlike those studies, the analysis of this study is based on verbatim transcriptions of the conversations, which are used in order to make quantitative analyses, and to present qualitative findings in the form of verbatim excerpts from the conversations. In the Discussion the findings will be commented on and related to complicating aspects of the interactions.
Materials and methods
In total 10 teams that were formed for one user each are included in the study. Five of the 10 users were registered at a habilitation centre for children and youth and the other five at a habilitation centre for adults located in another county. As the professionals that use the “user-centred” working model do not address any special kind of user, the selection of teams has been based on an attempt to obtain a distribution of the users regarding their sexes, ages, ascribed impairments, and participation in the meetings.
The young users are ascribed different congenital impairments and their ages vary from 4 to 16. The adult users are about 25–30 years old and have been ascribed different impairments that are either innate or acquired around the age of 20–25 years. The participation of the users at the meetings varied as follows: (1) the user did not participate at all (four teams); (2) the user was present but had difficulties in following the discussion due to severe cognitive impairments (one team); and (3) the user participated verbally (five teams).
The teams had been working for about one to six years. During this time changes had been made in the sense that members had begun and left for different reasons. Sometimes the teams invited someone who was able to contribute necessary information. The total number of participants at the 20 meetings varied from three to 10. In all meetings at least one relative participated, mostly a parent, but two of the teams included one adult sibling. In total the professionals represented approximately 30 different working specialities, for example, the different specialities represented at the habilitations centres, different categories of school personnel and of personnel working at centres for daily activities, in home support, and at work places adjusted to people with disabilities. Professionals working at each of the habilitation centres had been elected as “contact persons”.
The regular team meetings were held two to six times a year and lasted for about 45 minutes to two hours. Some of the informants explained that meetings could sometimes be held more often if required. In most cases the meetings took place at one of the habilitation centres but occasionally they met at another institution where the user stayed during the daytime, such as a school. None of the teams studied held a meeting at the user's home or that of a relative, but some of the contact persons said that teams occasionally do that.
At each meeting the daily life of the user and his/her well-being were discussed, as well as the conditions for, and the coordination of, the work of professionals that in some way had an effect on the user. Sometimes practical issues dominated the discussions, for example who contacts whom for the solutions of different problems and how to organize the rehabilitation of the user. Other discussions were preoccupied by joint attempts to determine the problems of the user and decide what measures to take in order to avoid or minimize the problems.
Methodologically the study deals primarily with “naturally occurring data” in line with discourse analysis (DA) (e.g. Silverman 1993). More specifically, the aim is to gather first-hand information about social processes in a “naturally occurring” context by using observations as well as recordings and transcripts that can offer a highly reliable record. In order to add information of contextual aspects and to increase the understanding of the interactions, additional data were collected and will be described below. The data collection took place mainly between the spring of 2000 and the autumn of 2002 and was carried out by the first author. Six of the teams were observed during more than one meeting while each of the four remaining teams were observed during one meeting only. In total 20 team meetings were observed. Of these, 18 meetings were audiotaped and two meetings were documented only in field notes. The observer arrived at the meetings at about the same time as the other participants. In order to get acquainted with the voices of the participants so as to enable the observer to transcribe the conversations, and to make field notes of non-verbal aspects, the observer sat at the same table as the other participants but was not involved in the negotiations. The additional data includes the minutes of the meetings that were observed as well as follow-up interviews/conversations with almost all of the participants after 17 of the meetings.
Ethical standards (Vetenskapsrådet 2002) were followed and two medical ethics committees approved the project. Names of the informants have been changed in order to protect privacy.
The qualitative analysis is based on in-depth reading of verbatim transcriptions of 10 whole meetings held by each of the 10 teams that participated in the project, and of parts of the remaining eight recorded meetings. The recordings of the meetings have also been listened to repeatedly, along with the readings of the transcriptions, and the additional data have been studied. For the quantitative analysis, methods and key concepts will be presented in connection with the analysis. In part, the analysis is based on methods emanating from conversation analysis (CA) and is concerned with the sequential organization of talk (e.g. Sacks, Schegloff & Jefferson 1974). A wider context than the preceding sequence of talk has been included in the analysis and in the discussion of the findings in accordance with discourse analysis (cf. Silverman 1993pp. 120–124).
We will present our findings in two sections. First we present the quantitative distribution of the discourse space of 10 meetings. Next we describe the control of topics, that is to say how issues and views on issues are brought up, with examples from the initial stage of the meetings. In the Discussion, we relate the findings to some of the complicated and sometimes dilemmatic aspects of the meetings that have been identified.
The distribution of the discourse space can be described by counting the number of words and turns used by each participant and also the number of words used per turn. The term “turns” refers to “turns at talk”, and one turn is “a continuous period when one speaker holds the floor” by means of verbal and non-verbal actions (Linell 1998p. 159). In the team meetings participants quite often take their turns simultaneously.
We present an overview of the distribution of the discourse space that is based on general calculations of the three categories of participants (users, relatives and professionals) in 10 meetings held by each of the 10 teams participating in the study. The analysis has three steps. We commence with an analysis of the relative dominance by analysing the distribution of discourse space between all the individuals, regardless of which participant category they belong to. In the next step we show how that distribution of discourse space is affected if we weigh in what category of participants the speakers belong to, which reveals who can be ascribed the overall dominance. Finally, we analyse how the discourse space is distributed between individuals in each category.
Table 1 presents the distribution of the discourse space in five meetings with userspresent and taking part verbally in the discussions. The users’ ages vary from 14 to 30. Four of them have primarily been ascribed some sort of physical impairment, although one of these users as well as the fifth user are assumed to have some kind of cognitive impairment.
|Category of participants||Users||Relatives||Professionals||All participants|
|Number of participants||5||6||19||30|
|Minimum/maximum number of participants in individual meetings||1/1||1/2||1/6||3/8|
|Total number of words||15 300||12 426||27 112||54 838|
|Percentage of total number of words||28||23||50||101|
|Average number of words per person||3060||2071||1427||1828|
|Minimum/maximum number of words used by individual participants||786/6634||869/3309||115/3869||115/6634|
|Total number of turns||1243||853||1448||3544|
|Percentage of total number of turns||35||24||41||100|
|Average number of turns per person||249||142||76||118|
|Minimum/maximum number of turns used by individual participants||75/421||39/238||8/239||8/421|
|Average number of words/turn||12||15||19||18|
|Minimum/maximum average number of words/turn used by individual participants||5/28||9/22||11/38||5/38|
If we compare the “average number of words and turns per person” we compare all individuals regardless of which participant category they belong to and can thus ascribe the relative dominance to the users. In other words, the individual users generally use more words and more turns than the individual relatives and professionals do. On average, the individual users speak twice as many words and take three times as many turns as the individual professionals do. Comparing the “average number of words per turn”, we see that users take many turns, though often shorter ones; i.e. they use fewer words per turn. On the other hand, the professionals and relatives have on the average fewer, but longer turns.
If we compare the “total number” of words and turns, and the “percentage of total number” of words and turns, we compare the distribution of discourse space between the categories. We thus ascribe the overall dominance to the professionals as they use most words and most turns. Most likely this depends on the fact that there are more of the professionals than of the others. Furthermore, as already indicated, the professionals possess the highest average number of words per turn.
The “minimum and maximum” values of numbers of words and turns and average number of words per turn indicate that the distribution within the different categories varies substantially. There are users, relatives and professionals who do not say much, either in terms of number of words or turns. The reasons for this lack of participation are not obvious. The unequal distribution among the users may be affected by their ages, their communicative competence, or their experience of taking part in this kind of meeting. In the case of the professionals, they are often a large group of people who have different relationships to the user as well as varying functions in their work with the user and in the meeting. Moreover, the unequal distribution within the categories may partially be caused by the fact that the times of the meetings vary between 45 minutes and 1.5 hours.
A more detailed analysis reveals that it is actually a small group of the professionals who have a relatively extensive discourse space, while other professionals do not say much. Thus, this small group of the professionals uses a relatively greater portion of the discourse space, and this seems to be affected by their different functions at the meeting, which in turn is connected with what issues are discussed, rather than with their level of education and professional status. It is more difficult to speculate on the unequal distribution in the relative category, but it can be assumed to be affected by what issues are discussed, as well as by the varying positions they have with their sons/daughters or siblings and the professionals.
The users do not talk less as the number of participants increase. The user utilizing the least number of words (786) of all users, also used the least amount of words individually in a meeting with only two other participants, whereas the user utilizing the greatest amount of words (6634) of all participants took part in a meeting with five more participants.
In the five meetings without users present (Table 2) a meeting is included with a user present half the time, who had severe difficulties in actually taking part in the conversation due to severe cognitive impairments. The users’ ages vary from 4 to 30.
|Category of participants||Relatives||Professionals||All participants|
|Number of participants||8||25||33|
|Minimum/maximum number of participants in individual meetings||1/3||3/6||5/9|
|Total number of words||21 991||40 971||62 962|
|Percentage of total number of words||35||65||100|
|Average number of words per person||2749||1639||1908|
|Minimum/maximum number of words used by individual participants||350/7304||182/5105||183/7304|
|Total number of turns||1216||1909||3125|
|Percentage of total number of turns||39||61||100|
|Average number of turns per person||152||76||95|
|Minimum/maximum number of turns used by individual participants||31/309||5/189||5/309|
|Average number of words/turns||18||22||20|
|Minimum/maximum average number of words/turn used by individual participants||7/24||9/48||7/48|
The distribution of the discourse space in these meetings is similar to that in the ones with users present. The relative dominance can be ascribed to the family members, as they individually use on the average a much greater number of words and turns than do the individual professionals. On the other hand, when the professionals have the floor, they keep it longer than do the relatives.
Moreover, the overall dominance can be accredited to the professionals, as they collectively use a significantly greater number of words and number of turns, as well as a greater average number of words per turn than the relatives. The distribution of numbers of words and turns within the different participant categories shows a great spread. Several of the professionals contribute relatively little to the meeting in terms of numbers of words and turns. This means that a small group of the professionals occupy a relatively greater discourse space. As in the meetings with users present, this unequal distribution of discourse space seems primarily to be affected by the professionals’ different functions at the meeting, which in turn is connected to what issues are discussed.
Summing up, professionals dominate the discourse space quantitatively in both kinds of meetings. This does not indicate that all of the professionals talk more than the users and/or relatives. It indicates rather that they are greater in number and that a small group of professionals uses a greater number of words in smaller numbers of turns, compared primarily with the users’ numbers of words per turn. In general, the users, and the relatives in meetings without users, speak more often than the other individual participants do, but with contributions of fewer words per turn. The character of some of these turns, as well as of the professionals’, will be exemplified in the next section. In the following we focus on the way in which the topics in the conversations are chosen and introduced.
The way in which new topics of conversation are chosen and introduced influences the participants’ possibilities to discuss subjects to which they attach importance, as well as their abilities to decide from what perspective they will be discussed. In the following we will analyse examples of how the conversations are initiated at the beginning of the meetings, which can be considered important moments for the identification of a person who is supposed to be at the centre. Furthermore, we will add some information regarding the introduction and maintenance of topics and perspectives on topics throughout the meetings that are exemplified. Let us first say something about the overall organization of the conversations.
The overall organization of the conversations can be described metaphorically as “orchestration” (Dingwall 1980), implying that someone conducts the meetings but without a fixed agenda and without strict rules determining when and about what the participants may speak. The discussions are guided by some kind of agenda; most of the time the minutes of the previous meeting function as an agenda and the habilitation professional that has been ascribed the role of contact person of the team most often take the responsibility for following it.
Three overall methods for getting the discussions started were found in all of the meetings. We have termed these methods invitation, conditioned invitation, and exclusion. The methods involve the users, as well as the relatives in meetings without users, differently. The following presentation reveals decreasing degrees of control of the users/relatives.
The first method we call “invitation”, as the contact person invites the user to choose and introduce a subject. This is shown in Example 1, taken from a meeting at the habilitation centre for adults in which the 25-year-old user, called Sebastian (all names used are pseudonyms), takes part. He is ascribed primarily physical impairments. In the meeting five more participants take part (a sibling, two social welfare officers, one psychologist, and the contact person/social welfare officer).
Example 1 (turns 3–5) (Transcription conventions used are found at the end of the text)
contact person: and I thought that I would begin by welcoming all of the team, first (some: thanks) time in a long time all of the team is gathered Angela [social welfare officer] has been prevented from coming a couple of times but is here today … and so it was two months ago since we last met … and I thought that I would ask you Sebastian what do you think is most important to talk about today …
Sebastian: so we c- can talk about physiotherapy if we (can't) we have to in one way or another, well, I talked to Lars [physiotherapist] a week ago he said like well Veronica [physiotherapist] will start to work with another team [refer to a team at the habilitation centre composed only of habilitation professionals] so I'll get him back, and that means that we'll have to chase him all the time, not, I (cancel, not exercises) me thoroughly, I'm sorry I can't afford to, with private physiotherapists and I don't have the time any longer to fight, I have like my goal to walk on crutches by springtime and surely I'll achieve that together with Veronica, cause she believes in me and I believe in her, (contact person: mm) and I really work on it a lot so well I'll achieve it only if there's a chance …
contact person: I thi- I have this thing with phys-I have to ask in general terms, this how does it work at the habilitation for adults eh (Sebastian: yes) do you get an appointment every time you visit the physiotherapist do you get a new appointment or do you make a schedule (Sebastian: well) or
The contact person invites Sebastian to choose a subject by asking him directly what he wants to talk about. The only qualification the contact person introduces is the request for something that Sebastian considers “most important”. Sebastian introduces the subject “physiotherapy” and discloses a problem. He makes a request of not being assigned the former physiotherapist. In responding to this request the contact person asks for more information, apparently, as it seems by studying the rest of the discussion, in order to be able to deal with Sebastian's problem within the frame of the existing institutional conditions. During the rest of the meeting the contact person undertakes the responsibility for terminating issues and prompting Sebastian to introduce new topics. Among other things Sebastian describes problems and worries, and makes requests, which the other participants seem to try to comply with as well as they can. Thus, to a great extent Sebastian introduces and maintains topics and perspectives on topics. Considering the number of words and turns used per person at the meeting, Sebastian dominates quantitatively, and he uses on average more words per turn compared to almost all of the other participants.
A modification of this method was found in two of the meetings without users present. The same team at the habilitation centre for children and youth held these meetings. The user's (Carl's) mother acts as though she was authorized, or indirectly invited, to initiate the meeting as she starts to inform of her situation without preceding formalities. Example 2 is taken from one of these meetings in which six more participants are present (school assistant, caregiver, trained nurse, speech therapist, social welfare officer and the contact person/occupational therapist). The caregiver works at a temporary care residence where Carl lives one week out of every month. Carl is nine years old and has been ascribed severe cognitive and physical impairments.
Example 2 (turns 1–2)
mother: [some lines omitted] then we have wanted to have a small breaking-up ceremony before the Christmas holidays … ((sighs)) ehhhh it's been, a complicated autumn … or Carl has felt rather well and so but, for me it has been a bit complicated here, and I apologize to above all school of all, lose information and stuff, I don't take on the responsibility for all of it, but you are aware of that (school assistant: yes) eh I don't know what was decided at the last meeting, I have, what I did last week, I went to get the corset adjusted, and Patrick [corset adjuster] said then that eehh, if the scoliosis operation comes off in near future we won't make any new corset, and considering what he said, I called and now have a telephone appointment with Olson [physician], the seventeenth, of December I have a telephone appointment with him, I'd like to know what he thinks of the new x-ray pictures that were taken the fifteenth of November, which David [Carl's father] got off and arranged … eehh, if he [the physician] thinks that, we have to hurry up, and now some time in the middle of December, evidently the doctors will get together to plan the first months of the year, who will be first in line and some kind of ranking
caregiver: then it's about the operation, scoliosis operation?
mother: yes yes it's about the scoliosis operation (caregiver: mm) so, that's been taken care of, eehh … they've taken blood samples to check on his premature puberty, and I'm expecting an answer from Simon Berg [another physician], he's taken his seventh injection, and that bl- blood test was done just before they gave him the injection, that one, I don't know if it was you who did it or, who gave him
nurse: it was last Wednesday (I think)
mother: last week yes (trained nurse: yes) yes … well, but Simon doesn't think it's anything special, but they'll continue with the injections f-, a long time after the operation until Carl has recuperated completely when the operation is finally done and then the puberty will recede … [introduces a new topic]
The mother is thus indirectly invited to start talking as she freely introduces various topics. She quickly accounts for how she and Carl have been doing since the last meeting, as well as what has been done in regard to Carl's care. She also apologizes for having forgotten “times and things”, but vindicates herself by claiming that not everything is her fault. The other participants listen and intervene only when they deem it necessary to confirm the mother's justification (school assistant), ask for a clarification (caregiver), and contribute a clarification (trained nurse). A few turns further on, the mother also makes explicit requests to the other participants for different services, which they seem to comply with as well as they can. The contact person stays in the background but sometimes intervenes by offering the floor to professionals involved in Carl's care in order to assure that they get the opportunity to raise issues. Consequently, to a great extent the mother introduces and maintains topics and perspectives on topics. The mother dominates quantitatively, considering the number of words and turns used per person at the meeting, and she uses on average more words per turn compared to almost all of the other participants.
We term the second method ‘conditioned invitation’ as the contact person invites the user in meetings with users present, or all of the participants in meetings without users, to decide on a topic, although in a restricted manner. For example, at another meeting at the habilitation centre for adults, the user Eric, 28 years old and ascribed certain cognitive impairments, takes part. Eric works at a sheltered workplace. He lives on his own but a couple of times per week a municipal social services employee visits him in order to support him in his housework. Five more participants take part in the meeting (mother, father, occupational advisor, social welfare officer, and contact person/physiotherapist). Eric is invited to choose an item from the minutes of the last meeting as in Example 3.
Example 3 (turns 1–7)
contact person: Eric (Eric: mm) so we'll begin with did you bring the minutes?
contact person: so that we know what issues we talked about last time so (Eric: no) we have it there ((takes out papers)) (Eric: yeah fine) I brought an extra … eh … or else we'll read aloud (from it) … what we had in the minutes last time was housing, occupation, education, finances and memory aids (Eric: mm) mm and so … well you may start with what … you find most important … and what's happened
Eric: yes well then we may begin with this education … item here for example (contact person: okay) … Anne [social welfare officer] and I sat down and talked about it, and we sent for a catalogue that I received today so I haven't had the time to find out very much, but we agreed that we should each look around a little on our own, and also decide on an appointment, a time sometime to present our different suggestions … well then we'll see what … what will come out of it …
contact person: what do you have in mind then?
Eric: I'm thinking about learning more Swedish and the written word … improve … that (contact person: mm) and so on …
father: it's good that Eric begins with this first ‘cause I also think that's the item of most immediate importance, perhaps we are even running out of time considering the time for handing in applications to most of the university colleges, there's no time to lose I think … but by God I hope that it's not too late … cause they're deciding about admissions in the autumn (social welfare officer: mm) and this is a thing that we parents have have always prioritized, you know, how important it is that Eric gets intellectual stimulation [some lines omitted]
The contact person does not invite Eric to choose a topic freely, but to choose one of the items in the minutes of the last meeting. He is asked to choose the item that he “finds most important” and after a pause also to report “what has happened” since the last meeting. Eric responds by reporting on the “education” item and presents a plan for steps to be taken that he and the social welfare officer have already decided upon. His report seems to be problem-free and it seems to be possible to conclude this issue and go on to the next one. However, the contact person prompts Eric to elaborate on the issue by asking him what kind of education he has in mind. Eric responds without showing any hesitation. Nevertheless, in the next turn Eric's father intervenes. He supports Eric's choice of item but objectifies him when he talks about him. Moreover, he reformulates the issue by presenting it as urgent and as something that always has been the parents’ key issue. This sequence is significant of the conversation at this meeting. Eric chooses items together with the contact person and he reports on his doings but he seldom discloses any problems or explicit requests. The other participants, primarily the parents, thus prompt Eric to elaborate on the issues raised by asking him questions and, for instance, identifying problems such as an overdue bill, bad food habits, and his difficulty in remembering different appointments. They also suggest steps to be taken in order to deal with the problems. Hence, Eric's chances to maintain perspectives on topics are limited. He agrees and objects to their suggestions to a varying extent. In the follow-up interview he claims to often object at first but to reconsider their suggestions when he has had the time to think them over at home. Eric dominates quantitatively at the meeting, considering the number of words and turns per person, but he does not use as many words per turn as Sebastian did in the meeting in Example 1.
In meetings without users, ‘conditioned invitation’ does not imply that relatives are singled out as participants who should choose an item from previous minutes. Instead, the contact person quite openly suggests or presents ways of organizing the conversation but without explicitly asking the relatives to make a choice or confirmation. However, the contact person more or less turns non-verbally to the relatives, seemingly searching for their confirmations. At a meeting that took place at the school of the 10-year-old user Camilla who has been ascribed severe cognitive impairments, the contact person/trained nurse and five more participants (mother, pupil assistant, remedial teacher, school nurse, and psychologist) agree on a way of organizing the conversation. The contact person starts the discussion in Example 4:
Example 4 (turns 1–3)
contact person: then we may do like this what do we have, do we have an hour at our disposal or? (others: confirming statements) one can go through the previous minutes or else we may start here and now, and go the rounds I don't know, I wasn't here last time
principal: isn't it a good idea to start with the present situation and next (psychologist: mm mm) that we continue on to, cause we had quite in- (psychologist: mm) a lot of discussions last time, at the same time (psychologist: yes) so for Camilla the situation has changed quite (mother: yes) a lot as (mother: yes), (we cannot really think the school) without this little group (mother: no) so, one first (round) of reports of the situation I think (psychologist: mm) it's not so bad and that (mother: no) next we continue on from (mother: mm) what we talked about
mother: yes right
The contact person starts by specifying the time frame of the meeting and suggests two ways of organizing the discussion. She turns to all of the other participants, including the mother, and hands over the decision of how to begin. The principal of the school responds to the delegation of the decision. She takes on the responsibility by suggesting how to organize the conversation and she turns a lot to the mother. We call this “conditioned invitation” as both the contact person and the principal give suggestions on how to begin and thus limit the options, but they also indirectly offer the mother (and the other participants) the opportunity to influence the topic selection. A few turns ahead the principal gives the floor to Camilla's teacher and she starts to report on how they work with Camilla at school. The principal and the contact person continue to “orchestrate” the conversation throughout the meeting, but it is the teacher and the mother who dominate quantitatively. The teacher gives lengthy reports on the situation at school and on the user's condition and behaviour. The mother supports and confirms her statements and reveals her concern for her daughter's condition, responds comprehensively to the other professional's expressed need for information concerning Camilla, asks her own questions, and makes some requests. Accordingly, in comparison with the mother in Example 2, this mother's chances to introduce topics are somewhat limited, but she introduces and maintains perspectives on topics to a great extent.
We call the third method ‘exclusion’, as neither the user nor any of the other participants are really involved in the contact person's choice and introduction of an item from the minutes of the last meeting. This is illustrated in Example 5, taken from a meeting at the habilitation centre for children and youth. Helena, a 14-year-old user who has been ascribed physical impairments, participates together with her mother and the contact person/physiotherapist.
Example 5 (turns 5–9)
contact person: and … last time we talked about … eh I thought that we might go through what we talked about
mother: yes it may be necessary
contact person: yes ((gives a laugh)) well on one hand you [Helena] and Agnes [occupational therapist] had done an AMPS assessment [Assessment of Motor and Process Skills] together (Helena: yes) (mother: that's right) so all three of you went through it (Helena: yes) and what I recall of it so … well then it was … terrific you manage most things (Helena: yes)
mother: (it's some) planning
contact person: it's the planning and that yes
The contact person chooses and introduces the item “AMPS assessment” (Assessment of Motor and Process Skills) from the minutes of the last meeting. The so-called “AMPS assessment” is supposed to identify possible problems that Helena may have in doing certain activities in her daily life and also how these possible problems could be attended to. The contact person recalls the result as being non-problematic and Helena confirms her positive statements. However, Helena's mother intervenes and adds a need for “planning”. By doing this, she reformulates Helena's and the contact person's positive interpretation of the result as somewhat problematic, which is taken up by the contact person. Similar sequences are found throughout the meeting. The contact person continues to introduce topics. She often asks for Helena's wishes and opinions of suggestions and at the end of the meeting she invites Helena to raise an issue, which she refuses. Many of Helena's short responses make her seem more or less indifferent towards the issues discussed. The mother thus interferes in the conversation, presenting her views, making suggestions and sometimes responding to turns that are allocated to Helena before she has got the chance to answer. The contact person also presents her views and makes suggestions. Thus, on one hand Helena's chances to introduce and maintain topics and perspectives on topics are limited. On the other hand, she seems somewhat indifferent and it is difficult to judge if, and if so to what extent, this results from the organization of the conversation. Helena uses the least number of words and the least average number of words per turn at the meeting.
In meetings without the user ‘exclusion’ also refers to the contact person's way of choosing as well as introducing an item from the previous minutes. This occurred at a meeting at the habilitation centre for adults in which 10 persons participated, including the 30-year-old user with severe cognitive impairments. The user and his two personal assistants leave before the meeting is terminated. (The other participants are the user's parents and sibling, who are not involved in the daily care of the user other than periodically, two day-centre professionals, a psychologist, and the contact person/former habilitation professional now working at the Social Welfare Service. Among other things she is the director of the personal assistants.) The “exclusion” is shown in Example 6.
Example 6 (turns 1–2)
contact person: okay … let's start … eh everybody has the minutes before you I thought we'll, go through it ((all bring out their papers, the psychologist cannot find his minutes but receives a copy from the contact person; about 12 seconds pass)) ehm we met in February … it, is a while ago … then we talked about the digital camera (psychologist: mm) about a basic course, within quotes, intended for all assistants … we can come back to that because … perhaps (psychologist: noo) there weren't so many who (psychologist: noo) could come
psychologist: it was it was I think it, was inconvenient for most of them, and, there we have simply said that … you should return suggesting a time you know, and I talked to, I don't remember who it was I talked to in the gang, in the gang of assistants, here a while ago and said that perhaps it would work well if we could have agreed on an appointment for today
The contact person chooses and introduces the first item, the “digital camera”, from the previous minutes without involving the user's parents and sibling. She suggests that they have to “come back” to a “basic course” intended for the user's personal assistants. The course has already taken place but attracted few attendees. The psychologist, who is responsible for the course, complies with the suggestion by accounting for the cause of the poor attendance and telling what steps he has taken since then. The contact person maintains her function as “orchestrator” throughout the meeting by introducing new topics from the previous minutes. However, the parents also contribute to the orchestration by asking questions, accounting for their views, and making requests, which the other participants seem to comply with as well as they can. Hence, the parents’ chances to introduce topics are limited, but they introduce and maintain perspectives on topics. The contact person dominates quantitatively together with the psychologist as they are involved in many of the issues discussed, either directly or indirectly, as they sometimes answer for the assistants who leave earlier.
To sum up, in all of the meetings we found three overall methods for getting the discussions started: invitation, conditioned invitation, and exclusion. In most cases it is the contact person who “invites” or “excludes” the user/relatives or other participants. Each method of choosing and introducing a topic in the beginning of a meeting is maintained to a great extent throughout that meeting, but all methods do occur in all of the meetings. The methods are associated with a decreasing degree of especially the user's control of topics. Moreover, the decreasing degree of user control of topics corresponds to a somewhat decreasing degree of the user's quantitative share of the discourse space. As indicated in the quantitative analysis, most of the users do possess a relatively large share of the discourse space at the meetings. However, except for the user in Example 1, most of their turns, including those of the two users not represented in the examples, can be described as short responses to questions and suggestions of the other participants. In meetings without users the relatives of the users are seldom singled out as representatives with exclusive rights to choose and introduce an issue, at least not at the beginnings of the meetings. Despite that, as in the meetings with the users, parents above all freely add or are asked to add their opinions.
At the beginning of this article we suggested that the concept of “user-centred” should not be literally interpreted, but rather considered a sociopolitical ambition. We may conclude that in the context of the practice studied “user-centred” need not mean that the users are present at the meetings, but that they are represented by people closely related to them. “User-centred” need not mean that the users dominate the discourse space quantitatively, as this kind of dominance is ascribed to the professionals. However, compared to the individual participants, the users, and the relatives in meetings without users, speak more often, but talk less each time they hold the floor. “User-centred” need not mean that either the users or the relatives have exclusive control of topics, as the contact person is in charge of the agenda but allows aspects of the topic control to be distributed among the participants. This kind of “orchestration” seems to contribute to the fact that both the degree of participation and the control of topics of the users vary. In accordance with Hagner et al. (1996) we conclude that the pace and tone of the meetings are sometimes dictated by relatives and professionals and that the users become involved primarily by responding to the questions and suggestions of professionals and relatives, not the other way around.
We assume that depriving the user of the opportunity to open the conversation, and allowing other participants to interfere by referring to the user in the third person, reformulating her/his responses, and identifying her/his problems, sets a limit on the possibility of supporting him/her in developing a sense of responsibility and self-reliance and thus increasing his/her involvement and control. On the other hand, it is arguable that the orchestration that has been identified, which allows other people to interfere by asking questions, calling attention to certain problems, and making suggestions, can be seen as an attempt to adjust to users who, for example, have problems in expressing needs and wishes and/or in remembering what has been said in earlier meetings, and/or are young and have a half-hearted attitude towards the planning of their life situation. Therefore, the orchestration can be seen as an attempt to also adjust to the relatives who still have custody or are considered important supporters of the adult users. Nevertheless, in order to increase the users’ control of the interactions, we strongly suggest that the participants continuously discuss the organization of the conversations and allow the possibility of reminding each other of not referring to the user in the third person and not introducing new perspectives by reformulating her/his responses and presenting the reformulations in the form of statements. Instead, new possible perspectives could be introduced by asking questions directly to the user. Moreover, the users could be encouraged to practice self-determination skills (Serna 1996) and eventually to try to conduct their own meetings.
However, we believe that the findings are associated with different complicating circumstances. For example, difficulties in expressing problems and wants bring the verbal activity that the meetings contain to the fore. The verbal and communicative skills that are required, including remaining reflexive, are not always possible to achieve even by users without any obvious problem in communicating. According to Whitney-Thomas et al. (1998) high levels of abstraction in discussions, such as talk about future events and visions, tended to decrease student participation. Similar tendencies have been noticed in the meetings in this study. It was also noticed that users may wish for life changes that are difficult to realize, which can be considered a dilemma of self-determination (cf. Karlsson & Nilhom 2006, Karlsson, 2007). It is important that the participants avoid too high levels of abstraction. However, as long as talk about the future is considered necessary it is probably difficult to warrant the maintenance of a “correct” level of abstraction.
Another complicating aspect is that the tendency towards professional dominance is influenced by the fact that the meetings are so-called institutional meetings (e.g. Agar 1985, Drew & Heritage 1992). The work of professionals is regulated and scrutinized and they have to report their actions. Consequently the conversations during the meetings have to be documented in minutes and/or different types of action plans that have to be followed up. This in turn means that a professional is in charge of the documentation that also forms the basis of the more or less formal agenda. In practice this means that to a great extent the work of the teams has to be done on the terms of the professionals, taking into account the restricted time they have at their disposal. Thus, the user cannot have exclusive control of topics and the professionals have to account for their perspectives, which take up a great deal of room in the discourse space. Observers of person-centred planning have noted that planning aids, such as agenda topics and suggestions, can sometimes be a hindrance as well as help to the “person” and the correct balance can be difficult to achieve (O'Brien & Lovett 1993, Hagner et al. 1996).
Furthermore, the professionals’ expertise and knowledge of the service system are sought after by the relatives and some of the users in the study. This means that the participants will have to balance expected authority and user independence. Hence, even though a shift in professional roles from the disempowering ‘expert’ to the empowering ‘servant’ is encouraged (cf. Helgøy, Ravneberg & Solvang 2003), interdependence may be the key concept of our modern times rather than independence (e.g. Williams 2001, Kjellberg 2002). Parents as well as professionals reveal their deep commitment and willingness to help the users achieve the ultimate goals of the user-centred model; full participation, equality, and quality of life for the user (Sjögren 1996). However, in the parents’ and professionals’ capacities of adult and expert authorities their discursive strategies at the meetings run the risk of steering the discussions in directions the user would not have chosen him-/herself, and thus, to be more or less paternalistic (Karlssonin press). On the other hand, full participation in the future may sometimes require paternalistic actions in the present (cf. Lewin 1998), especially when the users are underage.
We also found that relatives are seldom singled out as the chief representatives of the users in meetings without users present. Whether or not this fact lessens the possibilities of the users having their voices heard is not possible to conclude. As people take part more and more in various social contexts, the task of defining the needs and problems of the users who cannot speak adequately for themselves may be distributed among participants living with them and seeing them frequently (Björck-Åkesson & Granlund 1997). However, team members in our project sometimes had problems in judging what users may need, or they held different opinions on the needs and wishes of the user (Karlssonforthcoming). This reveals the difficulties of representing a person who has problems in communicating his/her needs and wishes.
Thus, various factors contribute to the different meanings of “user-centred” revealed in this study. Asymmetries do not easily vanish from any dialogue (Linell 1990) but need to be handled. We would like to emphasize the need for a deeper understanding of how aspects such as institutionalization, representation difficulties, varying communicative abilities, as well as expectations of expertise and adult liabilities emerge and are handled in these kinds of conversations. Because they influence the possibilities of people with disabilities that may make it difficult to exercise citizenship privileges, we can also learn more about how to implement communicative democracy in general.
… a marked pause
() words within single parentheses indicate transcriber's uncertain interpretation
(user: yes) the example marks the occurrence of a listener's support item
(()) words within double parentheses denote non-verbal behaviour
 words within braces indicate author explications
yes overlapping talk
italicizing indicates words spoken with emphatic stress
- (single dash sign) in the middle of a word denotes that the speaker interrupts him-/herself