Disability and Rehabilitation

ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20

Speech pathologists’ experience of involving people with stroke-induced aphasia in clinical decision making during rehabilitation Karianne Berg, Marit By Rise, Susan Balandin, Elizabeth Armstrong & Torunn Askim To cite this article: Karianne Berg, Marit By Rise, Susan Balandin, Elizabeth Armstrong & Torunn Askim (2015): Speech pathologists’ experience of involving people with stroke-induced aphasia in clinical decision making during rehabilitation, Disability and Rehabilitation To link to this article: http://dx.doi.org/10.3109/09638288.2015.1066453

Published online: 15 Jul 2015.

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Date: 05 November 2015, At: 21:40

http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–9 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1066453

RESEARCH PAPER

Speech pathologists’ experience of involving people with stroke-induced aphasia in clinical decision making during rehabilitation Karianne Berg1, Marit By Rise2, Susan Balandin3, Elizabeth Armstrong4, and Torunn Askim1,5

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1

Department of Neuroscience, Faculty of Medicine, Norwegian University of Science and Technology, Trondheim, Norway, 2Department of Public Health and General Practice, Norwegian University of Science and Technology, Trondheim, Norway, 3Faculty of Health, School of Health & Social Development, Deakin University, Burwood, Australia, 4School of Psychology and Social Science, Edith Cowan University, Perth, Australia, and 5 Department of Physiotherapy, Faculty of Health and Social Work, Sør-Trøndelag University College, Trondheim, Norway Abstract

Keywords

Purpose: Although client participation has been part of legislation and clinical guidelines for several years, the evidence of these recommendations being implemented into clinical practice is scarce, especially for people with communication disorders. The aim of this study was to investigate how speech pathologists experienced client participation during the process of goal-setting and clinical decision making for people with aphasia. Methods: Twenty speech pathologists participated in four focus group interviews. A qualitative analysis using Systematic Text Condensation was undertaken. Results: Analysis revealed three different approaches to client participation: (1) client-oriented, (2) next of kin-oriented and (3) professional-oriented participation. Participants perceived client-oriented participation as the gold standard. The three approaches were described as overlapping, with each having individual characteristics incorporating different facilitators and barriers. Conclusions: There is a need for greater emphasis on how to involve people with severe aphasia in goal setting and treatment planning, and frameworks made to enhance collaboration could preferably be used. Participants reported use of next of kin as proxies in goal-setting and clinical decision making for people with moderate-to-severe aphasia, indicating the need for awareness towards maintaining the clients’ autonomy and addressing the goals of next of kin.

Aphasia, clinical decision making, client participation, goal-setting, stroke History Received 8 December 2014 Revised 16 June 2015 Accepted 23 June 2015 Published online 15 July 2015

 Implications for Rehabilitation   

Speech pathologists, and most likely other professionals, should place greater emphasis on client participation to ensure active involvement of people with severe aphasia. To achieve this, existing tools and techniques made to enhance collaborative goal setting and clinical decision making have to be better incorporated into clinical rehabilitation practice. To ensure the autonomy of the person with aphasia, as well as to respect next of kin’s own goals, professionals need to make ethical considerations when next of kin are used as proxies in collaborative goal setting and clinical decision making.

Introduction Stroke is a major cause of death worldwide, and a seriously disabling health condition [1,2]. People who have survived a stroke may have impairments that affect language, cognitive and physical functions, as well as depression and emotional problems [2]. Furthermore, between 30 and 35% of people experiencing a stroke may have language impairments, such as aphasia [3,4]. Consequently, there is an ongoing need for rehabilitation through the health care system. In the past 20 years, recognition of the importance of client participation and client-centered approaches in rehabilitation and health care has increased [5]. This has

Address for correspondence: Karianne Berg, Department of Neuroscience, Faculty of Medicine, Norwegian University of Science and Technology - NTNU, Postbox 8905, 7491 Trondheim, Norway. Tel: +47 971 45 047. E-mail: [email protected]

resulted in a shift from professionals making all treatment decisions with little active involvement of the clients and their family members, to more extensive client involvement in making decisions, and formulating goals and plans [5,6]. Prerequisites for client participation include the client wanting and being capable of active involvement in his/her own recovery process [7–9]. It also includes professionals being willing to empower their clients to participate [10]. Thus, communication and collaboration between the client and the professional is a key element of this empowerment shift, with effective communication a vital component of all client participation, regardless of the medical condition [11]. Indeed, research indicates that client participation in medical decision-making is dependent on the client’s communication style [12] and verbal ability [13]. Emanuel and Emanuel [14] presented a model for exploring the patient–physician relationship in decision making. They described four different ways of understanding the

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patient–physician relationship. First, the Paternalistic example, where the professionals make the decisions on behalf of the patients, only giving the patients enough information to enable consent to treatment. Second, the Informative example, where the professional gives the patient all relevant information, so that the patient can choose between the possible options. Third, the Interpretative example, here, in addition to giving the patient all relevant information, the professional helps the patient articulate his/her preferences. Fourth, the Deliberate example, whereby the professional gives the patient all the relevant information, helps the patient identify his/her preferences and finally, gives his/her own recommendation(s). Such models can be useful as a reference point when studying professionals’ experience with client participation, in particular, for populations where the clients may be challenged by participating in decision-making [15]. These models provide a overview of what has been used in other settings. People with stroke-induced aphasia are less likely to participate in decision making given that communication ability is a key component and prerequisite for participation [11–13]. Studying the inclusion of people with stroke-induced aphasia is not only important given their vulnerability regarding participation but also because the research regarding professionals and clients experiences within this field is limited. Leach et al. [16] explored the current experiences and practices of eight therapists, representing the disciplines of occupational therapy, speech pathology and physiotherapy, with patient-centered goal-setting in a sub-acute rehabilitation setting. The researchers identified that different approaches to client centeredness; therapist controlled, therapist led or patient focused, were chosen by the participants based on their perceptions of their clients’ ability to participate. Participants perceived that a reduced capacity to engage in communication about the future was a barrier to clientcentered planning. This result is in line with the findings in a review of the effects and experiences of goal setting in stroke rehabilitation undertaken by Sugavanam et al. [17]. who reported that communication and cognitive impairments were seen as the major barriers for involving clients in goal setting. These findings emphasize how communication difficulties impede client-centered rehabilitation, even though only two out of 17 studies in this review had included participants with language difficulties. While clients with communication difficulties have largely been excluded from studies looking at client participation in goal setting, studies have shown that it can be possible to overcome some of the communication barriers met in client-centered approaches for people with aphasia [18–20]. Haley et al. [18] used a non-linguistic, picture-based instrument to support conversation with people with aphasia regarding their participation and preferences in life. This study showed that people with aphasia were able to access this information and concluded that this instrument could be a viable tool in collaborative goal setting. Bornman and Murphy [19] used a different tool, Talking Mats, to exemplify how it was possible to empower people with aphasia to participate in intervention goal-setting according to the ICF. Through the large, multi-center Australian study, the Goals in Aphasia Project, Hersh et al. [20] have looked at how professionals can act to enhance collaborative goal setting, SMARTER goal setting, with the acronym describing a goal setting process that is Shared, Monitored, Accessible, Relevant, Transparent, Evolving and Relationship-centered. The question is whether these tools have been adopted into the clinical practice of speech pathologists? It is known that it can be challenging to implement new theoretical knowledge or new methods into clinical practice. Rosewilliam et al. [21] conducted a systematic review focusing on the evidence for goal setting in stroke rehabilitation and

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demonstrated that although clients perceived participation as important, and professionals believed that they involved the clients, current practice could not be described as client centered. The field of occupational therapy has had an extensive focus on client-centered approaches both in research and clinical practice over the last few decades. Nevertheless numerous barriers to such approaches have been identified. Wilkins et al. [22], for example, looked at experiences with challenges of implementing clientcentered occupational therapy practice. They found that change is difficulties and challenges were seen on system, therapist and patient levels. At a system level, such challenges were identified as being related to policy and time. At the therapist level, the therapists’ ability to facilitate client participation through equality, sharing and partnership was emphasized. At the client level, factors related to the client’s personality and levels of impairment appeared important. Nevertheless, clinical guidelines for stroke rehabilitation in several western countries, including Norway, emphasize the active role of the client, and the importance of client involvement in goal setting and clinical decision-making is highlighted [23–25]. This includes collaboration on selecting treatment goals which are relevant to the client and have impact on the client’s everyday life. Making participation part of legislation [26–28], means that the client should be given the opportunity to take an active part in decisions about his/her recovery/treatment processes and to evaluate his/her own treatment. Nevertheless, currently, there is limited research on experiences with client participation in goal setting and clinical decision-making for people with communications impairments after stroke. Indeed, there have been several studies published on aphasia and goal-setting in recent years, but so far most of these have focused on; the kind of goals people with aphasia want [29,30], goals speech and language therapists think are important in aphasia rehabilitation [31], and the differences between the two sets of goals [32]. Although legislation and clinical guidelines emphasize client involvement, and studies have suggested possible facilitators for collaborative goal setting and clinical decision making, the evidence for whether these recommendations have been implemented into clinical practice or not is scarce. In light of this, it is important to investigate how speech pathologists experience client participation in their daily clinical practice. In particular, how communication and collaboration between people with aphasia and speech pathologists might be challenged by the clients’ language and communication disabilities as this is seen as the most prominent barrier to client participation in other studies [17]. Through investigating speech pathologists’ experience of client participation, we hope to raise awareness about the challenges and solutions related to involving people with communication disorders in goal setting and clinical decision making. Thus, the aim of this study was to investigate how speech pathologists experienced client participation during the process of goal-setting and clinical decision making for people with aphasia.

Methods In order to investigate people’s experiences and to gain an indepth view of a given phenomenon qualitative methods are suitable [33]. Therefore, we used semi-structured focus group interviews to explore the experiences of speech pathologists working with clients with aphasia. Focus group interviews were chosen because they facilitate interaction amongst participants and stimulate recall [34], which is especially valuable when studying a field that is emerging, such as collaboration in clincal decision making. The study was conducted in Norway from January to May 2013.

Client participation in aphasia rehabilitation

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Table 1. Participants’ characteristics. Current work site

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Code name SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP SLP

Focus group no.

Education degree

Years working as an SLP

Years working with aphasia

1 1 1 1 1 2 2 2 2 2 3 3 3 3 3 4 4 4 4 4

Bachelor Bachelor Bachelor Master Master Master Bachelor Bachelor Master Master Master Master Master Master Master Master Bachelor Bachelor Master Master

410 410 410 410 410 6–10 410 6–10 3–5 3–5 410 6–10 410 410 6–10 6–10 410 410 3–5 3–5

410 410 410 410 410 6–10 410 6–10 3–5 3–5 6–10 6–10 410 410 6–10 6–10 410 410 1–2 3–5

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20

Acute rehab.

Inpatient rehab.

Outpatient rehab.

Education

Othera

3 3 3 3 3 3

3

3

3

3

3 3

3 3

3 3

3

3 3 3 3

3 3 3 3 3

a

Other ¼ private and National service for special needs education.

Sampling and participants The sampling was purposive and speech pathologists working in or close to the major cities in three out of four Norwegian Regional Health Authorities were invited to participate in this study. They were recruited through existing groups of speech pathologists working in the field of aphasia, the e-mail lists of The Norwegian Association of Speech and Language Therapists and through lists of participants at a national aphasia conference over the last three years. E-mails with an information letter were sent out by the first author (KB) to recruit participants from the noted places. Participants met the inclusion criteria if they had at least one year of experience of working with people with aphasia and were able to travel into one of the three cities for a half-day session. E-mails were sent out to a total of 57 speech pathologists and 20 (35%) agreed/met the inclusion criteria to participate. The participants were 20 female speech pathologists from a range of employment settings. One had more than one year but less than two years of experience working with aphasia, while 10 had more than 10 years of experience. The majority (13) had a master’s degree. More detailed characteristics of the participants are provided in Table 1. Data collection Data were obtained from four focus group interviews with five participants in each group. The interviews took place at the work site of one or more of the participants at each location, and all were audiotaped. The first author (KB), who is an experienced speech pathologist, moderated the groups, and ensured that all participants had the opportunity to express their views. The second author (MBR), who is an experienced researcher in the field of client participation and has a broad experience in conducting focus group interviews, acted as an assistant, taking notes to ensure accurate transcription and asking supplementary questions. Each focus group lasted from 60 to 90 min. The discussion followed a semi-structured format; starting with openended questions inviting the participants to talk about their experience with client participation in goal setting and clinical decision making for persons with aphasia. Examples of topics

from the interview guide were experiences with: facilitation of client participation, implementation of client goals, examples of both positive and negative experiences with client participation, client participation in evaluation of therapy, and special needs of persons with aphasia. Participants were encouraged to talk about their experience related to the topic through examples from their own practice. As there were no new topics raised by the fourth interview, no additional attempts were made to recruit more participants. The interviews were transcribed verbatim and quotes from the transcripts were translated into English by the first author (KB) for presentation purposes. Analysis A group of three researchers (KB/MBR/TA) with extensive research experience, including aphasia, client participation and stroke treatment, conducted the data analysis using Systematic Text Condensation (STC), as described by Malterud [35]. STC is based on Georgi’s phenomenological analysis and was chosen because it is a structured and well described step by step method for analysis of qualitative data. The STC analysis procedure consists of four steps. First, the research group read all four transcripts to get an overall impression of the data, looking for preliminary themes associated with client participation and collaboration in goal-setting and treatment planning. In this part of the analysis process, it was important that the researchers tried to bracket their pre-understandings; in other words, tried to access the data with an open mind, searching for the voices of the participants, which is a principle of phenomenological research. In addition, bracketing pre-understandings was highly relevant in this study given that the first author is a speech pathologist herself. After reading all transcripts, the research group met to discuss similarities and differences in preliminary themes. In the second step of the analysis, the first author (KB) read through the transcripts again, systematically reviewing line by line, identifying units of meaning representing the participants’ experiences with client participation. Units of meaning were written down and initial coding started. Third, the research group agreed upon the content of codes and condensed them into groups. In this phase of the analysis, the researchers put the units of meaning into

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Table 2. Example of stepwise analysis using STC. Step 1: Preliminary theme

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The role of next of kin

Step 2: Unit of meaning

Step 3: Condensed meaning

Step 4: Final description

[In the acute stage] It’s probably more the hospital or the unit that makes the plan . . . but we talk to next of kin, I always think it is important to talk to next of kin in this early stage.

Next of kin act as proxies when the person with aphasia is not able to participate

Next of kin-oriented participation

common groups and identified over-arching codes. Condensed meanings were used to describe each theme while still ensuring that the voice of the participants was heard. Finally, the contents of each group were summarized to generalize descriptions and concepts concerning collaboration between people with aphasia and speech pathologists. The process through all four steps is exemplified in Table 2. Throughout the entire process, the research group ensured that the findings were within the context of the aims and objectives of the study by going back to the transcripts to validate if the findings reflected the original context. In the last stage of the analysis, the researchers refined and complemented the description of these findings by cross checking within and across the data from the four focus groups.

the goals and suggested which tasks to work with and asked the client whether he or she was happy with this. Client-oriented participation was regarded as the gold standard. While the three approaches were described as overlapping to some extent, each held certain characteristics and depended on certain facilitators and barriers. The participants wanted the people with aphasia to be active in goal setting and decision-making, but said that they sometimes had to rely on next of kin or their own professional experience due to a range of barriers including aphasia. The three approaches to participation will be described in detail below. Quotes from the data material are presented to illustrate the findings. Client-oriented participation

Rigour The main analysis was conducted by a group of three researchers (KB, MBR and TA). KB is a speech pathologist and a PhD student. MBR has a Master’s degree in Psychology and PhD in Public Health and is working as a researcher. TA is an associated professor. She is a physiotherapist of background with a PhD in Clinical Medicine. In addition, the analysis process and preliminary results was presented and discussed on several occasions with a research-group focused on patient education and patient involvement of which the first (KB) and second (MBR) authors are members. For instance, these discussions helped us to see alternative ways to group the results and finally to look at the results in a more holistic way. To validate the findings, a group of speech pathologists (some of whom were participants in the study), including the third and fourth author (SB and EA) were asked questions about what they associate with client participation and what is important in client participation for people with aphasia. The feedback from this group confirmed our results. Ethics statement The study was approved by the Regional Committee for Medical and Health Research Ethics in Central Norway (REK no 2012/ 1739). The focus group participants were given written information about the project beforehand and provided written consent. All participants were asked to respect anonymity towards each other outside the focus group setting.

Results Findings revealed that the participants had a wide definition of the concept of ‘‘client participation’’. They discussed participation during goal-setting and clinical decision making in terms of three different approaches: Client-oriented participation, next of kinoriented participation and professional-oriented participation. According to the participants, client-oriented participation implied that the client was an active participant in setting goals and making plans in collaboration with the speech pathologist. Next of kin-oriented participation, involved next of kin speaking on behalf of the client. The third approach, professional-oriented participation, included situations where the speech pathologist set

When asked to describe the concept of participation, there was consensus among the participants that this actively involved the client and included collaborative goal setting and decision making. Client-oriented participation was described as the preferred approach to client participation. The participants expressed how they tried to include the clients actively, so that the clients were able to express their own goals and wishes for rehabilitation. And then you have to talk with the client . . . need to talk with the client when he gets here. ‘‘This is what your referral says, is this in line with what you find important?’’ Then we might need to re-negotiate, what we are going to do, where to start assessment, what kind of tasks to work on [. . .] (SLP 13) According to many participants, negotiation was commonly utilized in client participation. Negotiations were used, not only to find a mutual starting point as described above, but also in situations where the client and professional had different goals. Some participants also described how they sometimes perceived the client’s goals as unrealistic. This resulted in differing goals. In these situations, the professionals tried to find a balance between the client’s wishes and their own professional opinion. Client participation is not easy, especially when it comes to dealing with unrealistic goals and expectations. Then you need to be aware of what client participation and self-determination is and you need to find a balance. (SLP 9) The participants described that they wanted to incorporate participation in their clinical practice, but they did not always feel able to do so. As one participant expressed: Client participation, I think this is a current trend, it is important and difficult, and in a way it is the intersection between ideals and reality. (SLP 13) Furthermore, all the participants had experienced barriers to client-oriented participation, and in all the four focus groups they talked about situations where participation was not possible.

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Challenges experienced in relation to client participation were prominent, as illustrated by the fact that in three out of the four focus group interviews, participants immediately started to talk about challenges when they were asked to give a first impression of what client participation was.

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The client is active to the extent he is able to be. If he or she is able to participate it is of course much easier to make the goals oriented towards what the client wants. (SLP 8) The main barrier to client-oriented participation for people with aphasia was, according to all the participants, the language disorder, which could make both dialogue and negotiation difficult. The participants said they wanted to achieve participation despite this barrier, but said that this was challenging. A few of them described how the use of tools could be helpful. These tools included the Living with Aphasia: Framework for Outcome Measurement (A-FROM) (a framework based on the International Classification of Function, Disability and Health (ICF) made to involve PWA in treatment planning affecting their lives) [36] and Talking Mats [19], as well as a locally made tool to assist collaborative goal-setting. Lately I have started to use a form made by a fellow speech pathologist because it is specific, you identify profession, hobbies, interests, maybe new hobbies and new interest and then you make a plan according to this, and you make goals, what to work with, secondary goals and main goals. (SLP 1) The few participants who had experience with the use of tools found them helpful, but they said that their experience was limited. When the speech pathologists talked about how they practised client oriented participation in their daily work, they described a collaborative act in which the goals and plans for rehabilitation were decided upon as part of an agreement between the client and the professional. However, situations where the client clearly took the lead were rarely mentioned. Next of kin-oriented participation Next of kin-oriented participation, was described as situations where speech pathologists communicated with next of kin who acted as proxies for the client. Overall, the participants described the role of next of kin as very important and that collaboration with them was necessary, both to achieve good treatment and to achieve participation. According to several of the participants, next of kin were often seen as a facilitator that made collaborative goal-setting possible. Examples were given of situations, where clients were not able to express their own goals for the treatment because of language difficulties or other cognitive impairments due to the stroke. In these cases, the speech pathologists turned to next of kin to try to find out what the client wanted. [. . .] for some, next of kin are crucial [in client participation], for the ones with severe aphasia or other severe cognitive impairments. (SLP 2) Another example, where the clients often were not able to express themselves was in the early period after admission to hospital, the acute stage. The participants with experience from this stage described that they often had to rely on next of kin. Although client participation was not always prioritized in the acute phase, next of kin were most likely to be involved when it was on the agenda.

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[In the acute stage] It’s probably more the hospital or the unit that makes the plan . . . but we talk to next of kin, I always think it is important to talk to next of kin in this early stage. (SLP 3) According to participants working in outpatient rehabilitation and education, the client often came together with their next of kin when they first met with the speech pathologist. Situations where the client and the next of kin had thought and talked about expectations and goals beforehand was experienced as especially helpful, as this made it easier for the client to express his/her goals, sometimes with some help from the next of kin. [. . .] some have thought about it [expectations for treatment] beforehand, and if they are together with a next of kin that they know well, they might have talked about it before and then they are able to present it. (SLP 5) Most of the examples on involvement of next of kin provided by the participants were from the beginning of the treatment course, but some of the participants also emphasized that they had experienced the benefits of being in close contact with next of kin throughout the entire follow-up period. They described how next of kin could provide important information, both when goals were to be made and when they were achieved. They [next of kin] are important for us to be able to set goals, to evaluate goals and to work systematically. To do this you need to rely on a functioning network, and I think it is dependent of next of kin. (SLP 2) The involvement of next of kin in goal-setting and treatment planning was not always perceived as positive or helpful. Many of the participants said that using next of kin as proxies was not always easy or even beneficial for the client. It was seen as crucial that both the client and the next of kin understood the extent of the damage from the stroke in order to be able to participate in goalsetting and planning rehabilitation. As an example, in all the focus groups some participants mentioned situations where next of kin expressed goals that differed from what the client wanted. If they [client and next of kin] are aligned [it’s helpful]. But they don’t always have the same goals. (SLP 20) Another challenge that was experienced by several participants was unrealistic goals and expectations from next of kin. It was not seen as uncommon that the next of kin had more unrealistic goals than the client. Working with goals sometimes can be a bit challenging if you have got strong next of kin who have unrealistic goals. I have experienced that quite a few times. (SLP 17) Overall, the participants considered it helpful and necessary to talk to next of kin and try to guide them through the goal-setting process. And according to some of the participants this could be especially needed when next of kin had unrealistic goals. Professional-oriented participation Professional-oriented participation included situations where the speech pathologists themselves took charge in setting goals and making plans and asked for the clients’ approval. In all focus groups, the participants described situations where they felt that they had to play the most active role and make the decisions. Most often, they chose this approach to participation due to the severity of the client’s aphasia. The more severe aphasia, the more likely

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the speech pathologists chose to be the decision makers. This resulted in professional-oriented participation rather than clientoriented participation. In all focus groups, it was clear that the speech pathologists had the understanding and experience that client participation could be difficult for people with aphasia. Due to the language impairment and communication disorder, the speech pathologists described situations where they could not be sure if there was a common understanding between themselves and the client. In these situations, the best they could hope for was an agreement from the client to what they suggested.

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I have to admit that with some of the ones with severe aphasia, well some might have goals that they are able to express, and that’s okay, but many don’t, they don’t come here ready to tell me, and I have to admit that sometimes I just do what I think is best and we might agree that this is what we will do, but it’s not like we really negotiate about goals. (SLP 12) Some of the speech pathologists described how their managers expected them to set and record goals and plans. As quoted above, they had to do this even when they were not sure whether this was in line with the client’s wishes or not. There were situations where the speech pathologists felt that external expectations forced them to come up with goals and plans even though they were aware that the plans might not be client centered. In these situations, they tried to get a confirmation from the client. As one participant described it: The biggest challenges come with the most severe aphasias, where the client barely can say yes and no. And then it is expected that we come up with measurable goals, and written descriptions where . . . I make the goal, and at best I get a confirmation that the client agrees. (SLP 14) In all the focus groups, the participants talked about how their skills as a communication partner were vital in challenging situations to promote client participation. When the clients were not able to give verbal responses, good communication skills could help to ensure at least a minor degree of client participation, with the speech pathologist asking questions that the client was given the chance to agree upon. As one of the participants described it: With these patients client participation is really difficult. You just have to sense what they want, and you have to ask them: ‘‘do you think this is okay?’’ . . . In my opinion you need to have good interpersonal skills, to sense if what you are doing feels right or not. (SLP 8) Many participants described situations where they felt that client participation was almost impossible. In these situations, client participation was exemplified by the speech pathologist giving the client several options to choose between in order for the client to feel active in their own rehabilitation. Some of the focus group participants questioned if this really was client participation. What I often do is that I ask them, it might be manipulative I don’t know, ‘‘do you want to work with this or that?’’ [. . .] then you might feel that you are given the chance to decide [. . .] speech pathologist-oriented participation. (SLP 17) Even though most of the speech pathologists were aware of the low degree of participation, there seemed to be little disagreement or discussion around the fact that they called it client participation

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even though the client involvement was very limited and only based on an agreement. Sometimes I ask: ‘‘Do you think it is okay that we work with this?’’ [. . .] I would say that we really did it together even though the client did not clearly express that this is what I want to work with and I want to do it this way, but together we have come up with something. (SLP 6)

Discussion The results from this study showed that the speech pathologists described three approaches to client participation; client oriented, next of kin oriented and professional-oriented participation. The participants agreed that client-oriented participation was the gold standard for goal setting and treatment planning. At the same time, examples given showed that the preferred approach to participation was not always possible to achieve. Participation was described as a continuum where different barriers would render the preferred approach impossible and thus lead the speech pathologists towards the other approaches; next of kin or professional-oriented participation. Severe language and communication impairments were described as the main barriers for client-oriented participation. Client-oriented and professionaloriented participation have similarities with approaches described by others [16,37]. The extensive use of next of kin as a proxy in goal-setting and clinical decision making has to our knowledge not been discussed in depth earlier. Some studies have defined next of kin and clients as equal partners, resembling what is described as ‘‘client-oriented participation’’ in our study [16,37]. However, these studies have not discussed potential challenges with this definition. According to our study, differing goals between clients and next of kin is a highly relevant challenge to address. This highlights the division of client’s and next of kin’s perspectives in client centered practice. Approaches to client participation Barriers and facilitators were described as factors influencing the choice of approach taken for each client, making client participation a continuum and an active process for the speech pathologists. Health care professionals, in general, agree that client participation is important but challenging when it comes to goal-setting with barriers outnumbering the facilitators [13,16,17,21,37,38]. The present study contributes to the growing body of research exploring speech pathologists’ experience of aphasia rehabilitation [29,31,32,39–41]. Rose et al. [40] found that speech pathologists in Australia listed collaborative goal setting as a major challenge to therapy. This is in line with the results from the present study that demonstrates that speech pathologists found collaborative goals setting and treatment planning challenging. Language and communication impairment are the most significant barriers that participants met in their attempt to facilitate client-oriented participation for people with aphasia. At the same time other barriers were present, such as divergent goals between clients and professionals and dealing with goals of clients and/or next of kin perceived as unrealistic by the speech pathologists. These results confirm those of Rohde et al. [32] regarding divergent goals and by Halle et al. [41], who they explored speech pathologists’ experiences of involving next of kin in aphasia rehabilitation. Our findings suggest that speech pathologists have an understanding of what client participation could be, but due to the perceived barriers they struggle to achieve what they see as the gold standard in their clinical practice, hence making them define client participation within the scope of several different approaches.

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The model proposed by Emanuel and Emanuel [14], which was described in the introduction of this paper can enhance our understanding of the different approaches to client participation and what they may contain. The approach to client-oriented participation which was found in the present study resembles for instance the Deliberate model, where the professional gives the patient relevant information, helps the patient find his or her preferences and tells the patient their own preferences. There was a high degree of agreement amongst the participants that clientoriented participation involved an active client and collaboration between the client and the professional, but it was almost never associated with the client taking a leading position in setting goals and making plans for rehabilitation. Through examples they showed how client-oriented participation was performed for clients with mild to moderate aphasia. This finding is in line with the Deliberate model, despite the fact that the speech pathologists gave few examples of how they actually worked with the clients to help them find their preferences. Further, the results from the present study showed that professional-oriented participation was the approach mostly offered to clients with severe aphasia. This kind of participation resembles the Paternalistic model [14], a model that by others have been described as not part of client participation and which can be considered a threat to the patient’s autonomy and choice [42]. In the current study, professional-oriented participation involved the professional either giving the clients the possibility of agreeing to one suggested goal, plan or task or the possibility to choose between two activities suggested by the professional. This may make us question whether the speech pathologists were ‘‘nudging’’ the clients to provide them with the opportunity of making an informed choice, or if the clients were rather given limited information and the decision was in fact made by the professional. Aggarwal et al. [42] have discussed whether paternalism is always an obstacle to the autonomy of the patient. In their view, a ‘‘soft’’ form of paternalism, ‘‘libertarian paternalism’’ or ‘‘asymmetric paternalism’’ is often used in health service interactions because the health professional often feels an obligation to try and correct patients’ ‘‘reasoning failure’’. In their paper, they described how professionals often give patients selective information to ‘‘nudge’’ the patient into making the choice the professionals regarded as the best for the patients. Whether this should be seen as traditional paternalism or an acceptable form of paternalism was dependent on whether the professional had been open about the deliberate way to frame the information. As described above, client participation could be seen as situations where the clients were asked to agree on treatment decisions. One study on stroke survivors’ experience with rehabilitation suggested that treatment decisions were one of the areas where clients did not mind if professionals took a leading role [43]. For some clients, it was not important to take part in decisions about treatment as long as they were given the opportunity to participate in decisions about their everyday life. What we see here might be the difference between impairmentbased and functional-based treatments. In other words, whether the client finds involvement relevant might depend on whether the decision is based on impairment or functional levels. It might thus be easier to involve clients in treatment decisions that have their root in a functional level or the client’s everyday life. A central theme in professional-oriented participation was the quest for confirmation from the clients to what the speech pathologists suggested when treatment decisions were to be made. Examples given by the speech pathologists suggest that many of these agreement situations had elements from an impairment level and one could ask if this agreement acted as a justification of at least some degree of client participation without asking the client what kind of decisions they wanted to participate in.

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The results from the present study also showed that even though the participants had knowledge of existing techniques and tools, only a few examples were given connected to the experience with using tools to facilitate client-oriented participation. Several studies have previously shown that it is possible to enhance client participation in goal setting and clinical decision making for people with aphasia through the use of special techniques to support communication and the use of tools made to improve the goal setting process [18–20]. Letting the clients express their own wishes and thoughts are of the most important reasons to use these facilitators. The findings of this study show that the implementation and practical use of tools to enhance client participation in goal setting and clinical treatment planning are very limited. It could be questioned whether speech pathologists have sufficient knowledge about these tools, and also whether such tools are available in a variety of languages often encountered in clinical practice. The few speech pathologists reporting use of tools seemed to want a larger selection of available tools. This was possibly to meet the needs of a larger group of clients. A consequence of these findings is that existing tools and techniques need to be better incorporated into the clinical practice of Norwegian speech pathologists as part of making the rehabilitation more client-centered. In addition, more research is needed on how to implement the use of tools and techniques to facilitate client participation especially for clients with severe aphasia in order to give them the opportunity to make decisions they perceive as important. The role of next of kin in goal setting and clinical decision making Leach et al. [16] described current clinical approaches to goalsetting within a sub-acute multi-disciplinary (occupational therapy, speech pathology and physiotherapy) rehabilitation setting and found it to be therapist controlled, therapist led or patient centered depending on the patient’s ability to participate as the crucial factor in deciding which approach to use. Similarly, Lloyd et al. [37] talks about patient directed goal-setting and therapist-directed goal-setting as opposite ends of a continuum. However, the balance between the approaches is sought within a collaborative setting, where the patient and the therapist work together to set goals. Neither of these two studies makes a clear distinction between the client and next of kin as they are both included in the ‘‘client’’ approach. In the present study, though the speech pathologists to some extent made this distinction through their examples. They involved family caregivers or next of kin in a holistic way, as if meeting the family was part of understanding the client, in other words they acknowledged the importance of involving next of kin in the rehabilitation process. But more importantly, next of kin were given the role as proxies when the language impairment and general health status made it hard for the clients to express their own goals. It is relevant to question the ethical aspects around the use of proxies in clientcentered goal setting, especially taken into account the experience from the speech pathologists saying that next of kin quite often had conflicting goals and plans with the client. Studies from other settings have shown that the views of proxies are not always aligned with the views of the client [18,44]. Such findings are in line with the present study, where the speech pathologists found it challenging when next of kin had goals which deviated from the client’s, a situation that was commonly experienced. On the other hand, Stein and Wagner [45] concluded that it could be beneficial to use a patient selected ‘‘helper’’ in issues related to informed consent in health-care, with emphasis on the patient selected, and that it remain the patient’s right to make the final decision.

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As aphasia is an acquired impairment of language with a sudden onset, most people probably have not thought about and in any case most likely have not discussed their preferences with anyone beforehand. This will make decision-making by proxies challenging for anyone who is not able to express their own thoughts on the issue. Severe aphasia is defined as a serious impairment, which makes the client dependent on their next of kin. In those cases, next of kin should be regarded as a valuable resource for both the client and the speech pathologist in the process of setting goals and making plans for further treatment. The importance of offering communication partner training to next of kin of people with stroke-induced aphasia as part of empowering the person with aphasia is vital. To be able to do this without taking away the autonomy from the clients, further research is needed on how professionals involve next of kin in decision making and how they handle the ethical questions raised in this matter. Brashler [46] explored the ethical challenges posed by the involvement of family caregivers or next of kin in health-care decisions. Brashler suggested that a family-centered approach may be better for stroke survivors, especially when aphasia is present. She argued that it is important that professionals see the whole picture, and address both the benefits and challenges with the involvement of family caregivers or next of kin. Another question that is relevant to discuss is whether next of kin should only be used as a source for information or do the health professionals need to take into account the needs of next of kin, as proposed by Rochette et al. [47]. A family-centered approach for people with stroke-induced aphasia would not only involve using next of kin as proxies, but would also mean taking the goals of family members into account as well [48]. Thus, the family-members will have a dual role as both caregiver and client, meaning that they will have their own needs that must be addressed.

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talked about, and it could be questioned why this is the case. The groups had different composition of participants, with two groups where all members knew each other and two groups where only some of the members knew each other. The level of discussions or disagreement did not seem to be affected by the composition of the groups. The participants seemed to agree that statements from others represented different experiences and did not need to be discussed. Overall, the participants were rather united in their descriptions of client participation.

Conclusion The results of this study highlight how speech pathologists experienced client participation during the process of goal-setting and clinical decision making for people with aphasia. According to examples given, client-oriented participation is mainly offered to clients with mild-to-moderate aphasia. This implies that greater emphasis needs to be placed on how to facilitate client participation for people with severe aphasia. The results from this study suggest that better incorporation of tools and techniques made to enhance collaborative goal setting and treatment planning could support the involvement of all severity groups. Another interesting finding was the extensive use of next of kin as a proxy in goalsetting and clinical decision making for people with moderateto-severe aphasia. Involvement of next of kin should be regarded as useful but cautions need to be made to maintain the autonomy of the client and to respect the next of kin’s own goals and needs. More research is needed to provide knowledge on how speech pathologists may assess, evaluate and enable clients’ readiness and wish for participation. Is client participation possible for all people with aphasia? In case it is not, how do we define who it is for? Research is also needed on the implementation and use of facilitating tools to increase participation.

Acknowledgements Limitations of the study The generalizability of this study with a small group of experienced Norwegian speech pathologists is limited to the contexts in which data were collected. In addition, our results must be regarded in relation to the selection of informants. Only female speech pathologists participated in this study. This is not a true picture of the total population even though the vast majority of speech pathologists in Norway are women. The relatively high average of years in clinical practice for these participants is something that needs to be taken into consideration as well. Most of the participants recruited for this study were experienced in the field of aphasia, and half of them highly experienced speech pathologists with more than 10 years since graduation. Speech pathologists with more recent education might have different experiences. The participants were recruited from a range of different employment settings, but the analysis did not reveal any major differences between their experiences. The first author being a speech pathologist herself might have influenced the research process; from framing questions in the interview guide, to how the interviews were conducted and data interpreted. Awareness and reflexivity on this issue was conducted in order to address this potential risk. An interview-guide was used to assure that the same topics were covered in all interviews. In addition, a researcher who is not a speech pathologist took part in all interviews. Although the first author’s background is a potential bias it was helpful during recruitment of participants and in understanding the participants’ perceptions of professional challenges. Within the focus groups, there was generally not much disagreement or discussion around the experiences that were

We want to thank all the speech pathologists who participated in this study for sharing their experience.

Declaration of interest The authors report no conflict of interest. The study was financed by The Liaison Committee between the Central Norway Regional Health Authority (RHA) and the Norwegian University of Science and Technology (NTNU).

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