The meaning of aphasia centres from the perspectives of people with aphasia and their relatives: understanding participation in the Dutch context

ABSTRACT

Background: Aphasia can have major consequences for participation. In line with other initiatives around the world, in the Netherlands aphasia centres provide support to people with aphasia and their relatives in the chronic phase to bridge the gap between therapy, rehabilitation, and participation in daily life. Although there is greater focus on participation in health care, the concept of participation is complex and not well-defined.

Aims: The purpose of this paper is to understand the value and meaning of the aphasia centres in the Dutch context. We focus on the emic perspectives of people with aphasia and their relatives: how do aphasia centres contribute to building up a meaningful life with aphasia in the chronic phase and how do the centres support them to participate? Hence, this study also contributes to the understanding of the concept of participation and its meaning.

Methods and procedures: This qualitative study used a naturalistic case study design in order to get an rich and multi-layered understanding of the context of aphasia centres. Within this context we focused on the experiences and perspectives of people with aphasia and their relatives. To secure involvement of people with aphasia themselves, research methods were attuned to their abilities to participate, and included participant observations, interviews, focus group meetings, and creative methods.

Outcomes and results: Aphasia centres help people with aphasia to overcome isolation. They bring new goals and perspectives and help people find new meaning in life. They are experienced as a safe place to learn, overcome shame, and build self-confidence. Working in groups is a valuable element, providing a mutual sense of belonging. Also, people experience they can have a meaningful contribution by helping others. Relatives underscore these values and also feel supported in building up their life with their partner.

Conclusions: Aphasia centres are a first step to overcome isolation and bear a first step towards participation in itself. They contribute to overcome barriers to relate to others by building self-confidence and overcome shame. This is a big step stone towards participation in the context outside the centre. From the perspectives of clients and relatives, participation is linked to the concept of being and belonging. At the same time, clients feel it is hard to meet societal norms of participation, framed as paid work, independency and self-reliance. This makes it harder to overcome shame. In this societal context, aphasia centres become even more relevant.

KEYWORDS:

• Aphasia centres
• participation
• perspectives of people with aphasia
• belonging
• qualitative research

Introduction

Aphasia can be described as a language disorder that is caused by brain injury, most commonly due to stroke (McNeil & Pratt, 2001). As stated by Arnesveen Bronken, Kirkevold, Martinsen, Bruun Wyller, and Kvigne (2012): “Language is the most important tool for human interplay, social participation and community and we make sense of life events and experience through language” (p. 1). This means that consequences of aphasia reach further than impaired language functioning. Language is essential for being able to communicate, and communication is a way to interact and to relate to others. Thus, aphasia can have major consequences for participation in various life domains and can unset the identity and life of those who suffer from it (Carlson et al., 2006; Simmons-Mackie & Elman, 2011; Threats & Worrall, 2004).

Many previous studies show the major personal and social impact of aphasia. Family life and social relations are affected by aphasia because of communication barriers (Vickers, 2010). Relationships and friendships can disintegrate, causing isolation (Brown, Davidson, Worrall & Howe, 2013; Northcott & Hilari, 2011; Parr, 2007), while these social bonds and relationships are strongly related to well-being and quality of life (Davidson, Howe, Worrall, Hickson, & Togher, 2008). Also, people with aphasia often are restricted from participation in work, hobbies, and social activities, which leads to even more isolation (Dalemans, de Witte, Wade, & van den Heuvel, 2010; Davidson et al., 2008; Parr, 2007). For that reason, it has been argued that attention for participation, family relationships, and social functioning should be part of the focus of care for people with aphasia (Vickers, 2010). After all, being restricted from participation in ordinary life has been denoted as “the greatest social and personal costs for illness and injury” (Carlson et al., 2006).

The concept of participation indeed has gained more and more attention and focus in health care. In the 1960s, the disability movement evoked discussions about participation from an emancipatory viewpoint of human rights infringements (Oliver, 1990, 1996; Piskur et al., 2014). From this point of view, attention should be paid to the way disability is socially constructed, instead of as an attribute of an individual. This provoked a shift from a medical model to a social model, influencing the way health and disablement was conceptualized. In line with this focus on social factors and the environment, the WHO replaced the concept of “absence of handicap” with “participation” in the International Classification of Functioning, Disability and Health (ICF) model (Elman, 2016; World Health Organization [WHO], 2001). The ICF model defines participation as “involvement in a life situation” or as “the lived experience of people in the actual context in which they live” (WHO, 2001). Participation started to be recognized as a key element related to health. Since then, participation has become a central therapeutic goal and outcome measure in clinical rehabilitation and rehabilitation research (Hammel et al., 2008; Worrall et al., 2011).

This development also influenced the field of care for people with aphasia. It raised attention for abilities to communicate in natural settings and to increase life participation, as well as for real-life outcomes (Elman, 2007, 2016; Kagan et al., 2008). This started off new initiatives in several parts of the world (USA, Canada, New Zealand, UK) by working in groups from a social model (Elman, 2007; 2016; Rotherham, Howe, & Tillard, 2015; Simmons-Mackie & Holland, 2011; LPAA Project Group, 2000). Since then, the outcomes and effects of group interventions for people with aphasia and the valuable elements of it have been studied (Elman, 2016; Lanyon, Rose, & Worrall, 2013; Ross, Winslow, & Marchant, 2006; Rotherham et al., 2015; Simmons-Mackie & Holland, 2011; Van der Gaag et al., 2005; Vickers, 2010). Research underlines positives outcomes of working in groups for people with aphasia on speech–language aspects, as well as on psychosocial benefits, like overcoming isolation, building on new relationships, peer contact, helping others and feeling more confident. At the same time, we can derive from these studies that the results and benefits are difficult to capture in quantitative outcome measures, common in clinical and rehabilitation settings. Understandable, considering that participation is a complex concept, not well-described and takes shape in an interplay of a lot of factors, personal and environmental (Eyssen, Steultjens, Dekker, & Terwee, 2011; Piskur et al., 2014).

If we want to better understand the value of interventions offered in group settings to promote participation, we need a more in-depth understanding of this interplay between the personal situation and the wider social context. In line with other initiatives in the world, in the Netherlands aphasia centres aim to contribute to increasing participation in life. In this paper, we therefore focus on the value and meaning of aphasia centres in the Netherlands, from the perspectives of both people with aphasia and their relatives. How do the aphasia centres contribute to building up a meaningful life with aphasia in the chronic phase? And how do the centres help people with aphasia to participate?

With this paper, we want to contribute to understanding of aphasia centres in the Dutch context, in order to contribute to the international debate about care for people with aphasia. We focus on the emic perspectives of people with aphasia themselves and their relatives, because it can shed light on their experiences and their meaning of participation. Hence, this study can also contribute to the understanding of the concept of participation. We will start by describing the aphasia centres and the Dutch context in more detail.

The Dutch context: aphasia centres and participation

When we focus on the Dutch context, we see similar developments around the care for people with aphasia as in parts of the world. According to the Dutch Association for People with Acquired Brain Injury (ABI), people with aphasia often lack appropriate care after rehabilitation (Verschaeve, 2003; www.hersenletsel.nl). People with aphasia and their relatives emphasize the importance of care and support to help them to find new ways to build up their lives in the chronic phase of aphasia. This can be underlined with research that shows that feelings of isolation and of being unable to participate first and foremost becomes particularly clear after the rehabilitation phase when people with aphasia return home (Dalemans, 2010; Le Dorze, Salois-Bellerose, Alepins, Croteau, & Hallé, 2014; Verschaeve, 2003). It is then that they are confronted with the life they led before the brain injury and with the consequences of their new health status. It is at this moment that people with aphasia and their relatives become aware of the impact of aphasia on social bonds, relationships, and the ability to participate (Arnesveen Bronken et al., 2012; Brown, Davidson, Worrall, & Howe, 2013; Dalemans, 2010).

As a response to experiences of a lack of appropriate support and care, the first aphasia centre was established in The Netherlands in 1998. It started as a small initiative in a nursing home to overcome a lack of care for people with aphasia. It was further developed with support of the former Dutch Aphasia Association, in cooperation with social community initiatives for people with aphasia. The initiative turned out to meet the needs of people with aphasia in the chronic phase (Verschaeve, 2003). The positive outcomes resulted in the opening of other aphasia centres; there now are 22 such centres across the country.

The aim of the centres is to provide professional care and support to people with aphasia and their relatives in the chronic phase, and to bridge the gap between therapy, rehabilitation, and participation in daily life (www.afasiecentrum.nl). People with aphasia can learn to optimize their communication and participate more actively in social life and in society. A central element in this approach is living as independently as possible and learning to live with the limitations encountered due to aphasia. People with aphasia formulate their own personal goals and work in groups with peers to reach these goals. This peer-to-peer contact helps people to discover their own capabilities and to learn from each other. People with aphasia who visit the aphasia centre are supported by professionals like speech language therapists, social workers, psychologists, nurses and also by volunteers.

The aphasia centres also support relatives. They advise about aphasia and possibilities to communicate. They also support relatives with picking up their own lives with a partner with aphasia. Also, aphasia centres function as an expertise centre for stakeholders (speech language therapists, policy makers, students). The centres’ approach is in line with initiatives in other parts of the world, where group support for people with aphasia or ABI was established (compare studies of Elman, 2016; Lanyon et al., 2013; Legg & Stott, 2007; Lexell, Alkhed, & Olsson, 2013; Ross et al., 2006; Rotherham et al., 2015; Simmons-Mackie & Elman, 2011; Simmons-Mackie & Holland, 2011; Van der Gaag et al., 2005; Vickers, 2010). Key elements in these worldwide initiatives are the focus on promoting interaction with others in a natural communication setting, peer-to-peer contact, attention for psychosocial functioning, communication with and support of the partner and work on positive identity. A difference might be the goal for societal participation in the Dutch context and policy expectations regarding informal care by the partner in the so-called “participation society”, that are not specifically mentioned in the international context.

Attention and support for people with aphasia in the chronic phase is even more relevant in today’s Dutch context, because participation is an important concept on a societal level. In his yearly speech in 2013, the Dutch King introduced the concept “participation society” and this became a leading concept for government concerning the social domain. Every citizen has to take responsibility for his or her own life, while the role and facilitation of the government decreases and is reduced to a more facilitating role. Participation increasingly is emphasized in Dutch healthcare policy: All people, including those in a vulnerable situation, should participate and take responsibility for their own life and environment. This is especially reflected in financial cutbacks of health care: more informal care is expected from families and friends while publicly funded care is reduced (Grootegoed, van Barneveld, & Duyvendak, 2014). This transition of responsibilities in welfare states can be seen in other European countries as well (Rostgaard et al., 2011; Taylor-Gooby, 2004). The own responsibility and participation of citizens is emphasized and self-reliance has become more and more important. When people need help, they ought to get support of family, friends and their own social network. Participation, taking own responsibility and contributing to society is expected from all citizens, also from people with aphasia. From this perspective, people with aphasia in the chronic phase and their relatives face a big challenge (Schipper, Kessels, & Van Erp, 2010).

Methodology

This study was commissioned by the former Dutch Aphasia Association (now Dutch Association for Acquired Brain Injury). The research team consisted of four social scientists with different backgrounds and one student in health sciences. All researchers had former experiences with people with ABI in research. Data collection was conducted by two researchers (SW, WvdB) and the student; the other two researchers (KS, TA) reflected on the research process and also analyzed the data.

Study design

The focus of this study, the meaning and value of aphasia centres from the perspectives of people with aphasia and their relatives, can be understood in more depth by exploring these in the natural context. Therefore, we conducted a qualitative study, using a naturalistic case study design (Abma & Stake, 2014). This means that we approached the aphasia centres as natural cases and studied this natural occurring setting from multiple perspectives (people with aphasia, relatives, professionals, volunteers). This provided us with the opportunity to get a rich and multi-layered understanding of the context in which people with aphasia and their relatives receive support and care in the chronic phase (Flyvbjerg, 2011; Simons, 2013).

The 22 aphasia centres in the Netherlands are varied. Not only in geographic location (urban periphery), but also in number of years in existence, size (number of clients that visit the centre) and the amount of opening hours during the week. Some centres are part of a rehabilitation centre, some of them are linked to social welfare organizations, some are independent organizations. The aphasia centres all under scribe the same goals and philosophy, but in practice activities vary. Therefore we have chosen to focus on three different aphasia centres. This gave us the opportunity to find a balance between a rich variety regarding our natural case study approach, as well as the possibility for more in-depth understanding within these three different contexts. For more details about these three aphasia centres, see Table 1.

Table 1. Overview aphasia centres.

Aphasia centre	Location/organization	Open since	Opening hours during the week	Number of clients	Activities	Professionals and volunteers
A	Urban, big city Independent Aphasia Centre	16 years	5 days/week	30	Conversation groups (different groups related severity of aphasia) Reading groups Computer groups Painting group Singing group Participation group	1 coördinator (SLT) 2 speech language therapists, one specialized in aphasia 1 psychologist 1 nurse 10 volunteers, of which 3 with aphasia
B	Urban, big city Origin in community based aphasia group, part of community bases organization	12 years	3 days/week	22	Conversation groups (different groups related to severity of aphasia Reading group Computer group Practice group (practicing daily life activities like cooking, shopping, making phone calls, using public transport)	1 coördinator (SLT) 1 speech language therapist 1 social worker 1 psychologist (2 dayparts) 6 volunteers of which 2 with aphasia
C	Peripheral, small town Part of activity centre of a rehabilitation centre (daycare facility for people with physical disabilities)	2 years	2 days/week	10	Conversation group (one group)	1 coördinator (SLT) for intake, support plan for clients and support for social workers 2 social workers 4 volunteers

Data collection

Within the three chosen aphasia centres we started a similar process of data collection data. Several qualitative methods were used to collect a rich variety of data, called triangulation (Ritchie & Lewis, 2003). This variety enabled us to check the integrity of the data and extend the inferences drawn from it (Denzin, Lincoln, & Giardina, 2006). Furthermore, it supported an iterative process of data collection: the outcomes of the observations were input for the interviews and focus groups and vice versa.

Participant observations

In all three aphasia centres, we started with participant observations (80 h in total). Two researchers and the student researcher were present in the aphasia centres to observe what happened during the day, what activities took place, and the way in which people interacted and communicated with each other (clients, professionals, volunteers). Participant observation also provided information about non-verbal communication, especially relevant when verbal communication was not possible due to aphasia (in line with Parr, 2007). The ethnographic approach and being present also gave us the opportunity to have informal conversations with clients, to get acquainted with them, and to approach them for solo or group interviews in a later stage. We made field notes to describe our observations and share our experiences; we reflected on these notes within our research team.

During this observational phase we also participated in two activities with a group of clients and supporting staff to practice real-life participation. We joined the group traveling to a shopping centre by public transport, and we went to the airport by train. We experienced what these activities mean to clients and later we could talk with the clients about these activities and their experiences.

Interviews

During the participant observations and informal talks, we selected and approached clients for interviews in all three aphasia centres (n = 12, see Table 2). We strove for as much variety in client population as possible (e.g. age; sex; marital status; severity of aphasia; background; work situation; other impairments like hemiplegia, memory loss, apraxis). Clients had attended the aphasia centre for at least six months (between six months and 2.5 year), during 1–3 days a week. We especially paid attention to also include people with severe aphasia. Our focus was on values and experiences of people with aphasia; we therefore didn’t get notice of the clients’ specific bio-medical background. Former research showed us that the severity of ABI was not related to experiences with participation (Schipper, Visser, Hendrikx, & Abma, 2011) and that participation is related environmental factors like support (LPAA Project Group, 2000).

Table 2. Overview respondents interviews.

Respondent number	Age	Sex	Severity of aphasia	Marital state	Aphasia Centre
Clients
1	36–45	M	Severe	Married	B
2	36–45	F	Moderate	Married	A
3**	56–65	F	Mild	Married	C
4	56–65	M	Mild	Single	C
5	66–75	M	Severe	Married	C
6	36–45	M	Moderate	Married	B
7	46–55	F	Moderate	Divorced	C
8	46–55	M	Moderate	Married	B
9**	66–75	M	Severe	Married	A
10**	45–55	M	Severe	Married	A
11*	36–45	F	Mild/moderate	Divorced	A
12*	46–55	F	Mild/moderate	Married	B
Relatives
1	56–65	F	Severe	Spouse	B
2	66–75	F	Moderate	Spouse	B
3	36–45	F	Moderate	Spouse	A
4	36–45	F	Severe	Partner	A
5	46–55	F	Severe	Spouse	B
6	66–75	F	Severe	Spouse	A
7**	56–65	F	Severe	Spouse	A
8**	56–65	F	Mild	Spouse	B
9**	66–75	F	Severe	Spouse	A

Legenda:

*Interview with support of relative.

**Double interview (person with aphasia and relative).

Severity of aphasia: rated by the researchers, related to ability of verbal expression.

For the semi-structured interviews with clients, we used a topic list that was based on participant observations and earlier informal talks, as well as on literature about participation of people with ABI and aphasia (for topic list see Appendix). We also took notice of other studies in which people with aphasia were involved in research (Dalemans, Wade, van den Heuvel, & de Witte, 2009; Luck & Rose, 2007). During the interviews, clients used supporting tools with which they were familiar such as an iPad or communication aid/book. They also used other means of expression like drawing and writing to support their verbal expression. Clients themselves could choose where the interview took place. Most of the interviews were held at the aphasia centre. Some clients preferred to do the interview at home with their relative present for support with their communication and to feel more comfortable and they preferred that their relative could support with communication. In these interviews, the main focus was on the client, but we also took into account the perspectives of the relatives.

We also interviewed relatives of the clients (n = 9), also using a topic list. These relatives were approached by the professionals of the aphasia centres. The professionals suggested relatives they thought were willing and able to be interviewed, and the researchers chose the sample keeping in mind variety of age, gender, and severity of relatives’ aphasia.

All interviews were audiotaped after permission and were transcribed verbatim. The clients’ visual material (e.g. drawing, writing) also was used in data analysis.

Focus group meetings

To explore the perspectives of clients we also conducted focus group meetings during the centres’ existing group meetings. This method has several benefits (Legg & Stott, 2007). People with aphasia can experience an interview as too challenging because of their problems expressing themselves in a face-to-face situation. Having a conversation in the safe environment of a group may be less threatening for them. In addition, people can help each other in their formulations and can build further on what others have said (Legg & Stott, 2007). Professionals and volunteers who supported the group meetings were present and could help with communication. In total, 37 clients joined a focus group meeting (see Table 3). A topic list was used as a starting point for the dialogue. The group interviews also were audiotaped after permission and later transcribed verbatim.

Table 3. Overview focus group meetings.

Focus group meeting	Number of participants and sex	Severity of aphasia*	Others present	Aphasia Centre
1	7: 3M, 4 F	Moderate/severe		C
2, Creative session	3: 2M, 1F	Moderate		B
3	7: 7 M	Severe	With professional and volunteer	C
4	5: 4M, 1F	Moderate	With a volunteer	C
5, Creative session	6: 4M, 2F	Severe	With professional and volunteer	B
6	8: 5M, 3F	Moderate	With professional	C
7	5: 3M, 2F	Moderate	With volunteer	A
8	3: 2M, 1F	Mild/moderate		A

*Severity of aphasia: rated by the researchers, related to ability of verbal expression.

Creative methods

Because of some clients’ limitations in verbal expression, we used creative methods to support clients in expressing themselves. These methods are used in the social sciences to collect data and explore the meaning and interpretation of those involved (Kara, 2015). During group meetings, we asked clients to make collages, using photos and images from magazines, about their experiences with the aphasia centre and about what participation means to them. The collages then were shown in the group and, with the help of a speech therapist, the clients tried to express and discuss their collages. The group sessions (one with seven clients, one with four) were videotaped after permission, so the interaction of the visual data materials and the verbal expressions of the people with aphasia could be analyzed.

Analysis

Because of the explorative nature of our research we conducted an inductive thematic analysis (Braun & Clarke, 2006). Two researchers separately coded transcripts of the interviews, focus group meetings, field notes of the participant observations, and the (creative) group conversations to increase the validity of the data (Ritchie & Lewis, 2003).

The themes of both researchers were compared and discussed by the research team until consensus was reached about the themes’ relevance and meaning. For each theme, the most suitable quotes were selected to illustrate findings. The videotapes were used to enrich the analysis of the collages and the verbal expressions during the group sessions with the non-verbal, visual expressions, called referential adequacy (Lincoln & Guba, 1985).

At the end of the project, we organized a focus group meeting in each of the three aphasia centres to validate the findings and the derived themes with clients (i.e. a member check) Besides validation, these meetings also brought up new elements that helped to deepen the team’s understanding (Mays & Pope, 2000).

Quality procedures

We used several procedures for qualitative research to enhance the credibility and dependability of our data (Mays & Pope, 2000; Ritchie & Lewis, 2003). We carefully selected the aphasia centres and the participants (purposeful sampling). We were present at the aphasia centres for a longer period (prolonged engagement, persistent observation). We also used triangulation (various data methods). We systematically reflected on our data and data collection procedures within our research team and analyzed our data, following a structured procedure by two researchers and discussing the whole analysis in our research team. Finally, we used a member check to see if our interpretations corresponded with the perspectives of the participants. This was a challenge for people with aphasia. Many of the respondents were unable to read a written report of the interview. Providing them with such a report also could confront them with their disabilities (respondents’ burden). We therefore chose not to use written member checks for people with aphasia. We tried to check our interpretations in the focus groups meetings at the end of the project by being aware of the non-verbal expressions and the congruency with the verbal expressions.

Ethical considerations

All respondents received written, aphasia friendly information about our research and were informed about the procedures (also verbally). They voluntarily took part and gave informed consent (written or verbal). We aimed for anonymity, respect for privacy/confidentiality, and transparency. With regard to clients, we also took non-verbal expressions of discomfort and stress into account and carefully considered our procedures to avoid respondent burden (for example regarding written member check and written informed consent), while taking our quality procedures in mind (Ulrich, Wallen, Fiester, & Grady, 2005). The study was approved by the Ethical Committee of the VU Medical Centre.

Findings

We derived six main themes that characterized the value of the aphasia centres from the experiences and perspectives of clients and their relatives. Figure 1 presents the themes. To stay as close as possible to the expression of the clients themselves, we did not edit the quotes.

Figure 1. Themes related to the value of the aphasia centre from the perspectives of clients and their relatives.

Overcoming isolation in the chronic phase: new goals, new perspectives, new meaning

Clients who visit the aphasia centre have left the rehabilitation phase behind and try to continue their lives at home, facing the consequences of aphasia. In practice, this has proven to be a challenge for them and their relatives. In this chronic phase, they try to find the right support. Some clients have found their way to the aphasia centre on the advice of the rehabilitation centre or a speech therapist, others after a search for support on the internet or via a patient association. Clients often referred to their lives before they came to the centre. They talked about feelings of isolation, being locked up at home and hopelessness:

Awful, because sitting there, and then? Home, and then?

(male client, aphasia centre C)

I always have worked…. and two and a half year…. Stroke….then nothing….Just sitting there….

(male client, aphasia centre B)

When clients first come to the aphasia centre, they start with making plans and goals. They must formulate this themselves, supported by a speech therapist and their partner or relative. Clients expressed that talking about goals can be very confronting. It is then that they must face their limitations and make new, realistic goals. Most clients expressed that their main goal was to learn how to speak, write, read, and calculate.

Visiting the aphasia centre brought new perspectives for clients. They experienced that the focus is not on what they can no longer do but on the capabilities they still have. It is about new opportunities despite their impairments and is associated with new goals and meaningful activities:

I think it makes you better, although it can be only 90 percent. I try to go on…. You do need a goal, that is much better for you.

(female client, aphasia centre A)

By coming here at the centre, I have reached a lot of goals, I think. Because I could not talk, only said ‘yes’ and ‘no’ and now I can tell my story.

(female client, aphasia centre B)

Relatives also mentioned the value of new goals, perspectives, and meaningful activities. One of them said:

Instead of being at home all day, he now has new experiences. By visiting the centre he has a new goal in his life and a meaningful day activity, that satisfies him. He feels recognized. He has valuable contacts there. And he learns to focus on things he can do.

(spouse of male client, aphasia centre B)

A safe place to learn, build self-confidence, and overcome shame

All clients mentioned that they experience the aphasia centre as a safe place where they can be who they have become after ABI and where they can flourish. The centre feels like a safe haven, which is greatly appreciated:

The centre is very valuable, it feels like coming home. A place where you can be yourself, a safe environment.

(female client, aphasia centre A)

Clients often compared their experiences in the centre with their experiences with life outside the centre and in society, which is ever so fast. The world outside the centre often is seen as “the evil outside world” or “the tough world”. The centre is a place where they are no exceptions:

I benefit…. the group here….because I talk to people here and it is just normal….they consider me as normal…. That is important to me.

(female client, aphasia centre C)

Clients also mentioned that people in the outside world think that they are not normal. They feel stigmatized:

People often think we are stupid…. but that’s not the case. This can happen to any normal person.

(male client, aphasia centre B)

A lot of clients expressed feelings of shame, resulting in an even higher barrier to talk to or connect with others. In the aphasia centre, clients experience less barriers and a safe environment; making mistakes is allowed. Here, feelings of shame disappear:

Here, the shame fades away. We are all in the same situation.

(male client, aphasia centre A)

The safe environment is experienced as a beneficial space where people with aphasia can have informal contact with others. It is not only a nice and warm place, it also is a place where clients have to work hard and practice, over and over again. Clients expressed the following:

Try, try, try

(male client, aphasia centre B)

Practice, practice, practice

(female client, aphasia centre B)

Talk, talk, talk, that is most important.

(female client, aphasia centre C)

Clients expressed that participation in the aphasia centre helped them to cross barriers and build self-confidence. In this safe environment, they are invited to take initiatives and feel freer to socialize. They feel more confident in social contacts. A client said:

Now I dare to meet people…yes, meet people and talk, ask….

(female client, aphasia centre C)

I didn’t dare to talk to friends, I didn’t want to….Now I feel that…. I have more confidence than before….than I ask: how are you? What are you going to do?

(male client, aphasia centre B)

Working in groups: peer contact, helping others and having a meaningful contribution

In the aphasia centre, activities mainly take place in groups to practice communication. According to clients, this stimulation of interaction in the group is important because in daily life speaking actively is not self-evident. In the centre, clients must speak. Clients expressed that it is important to keep practicing and being stimulated to talk.

I realize on holiday, four weeks with my husband, nice, but you do not talk that much. Read a book and less talking. Then talking gets less, you really find out.

(female client, aphasia centre A)

Working in a group with other people with aphasia also means interaction with peers. This means clients realize that they are not the only ones who suffer communication problems. At first, this can be confrontational, as one client told about the first time she came to the centre:

It was shocking. When you come here for the first time you see that all people suffer from something. One cannot talk at all, one has a paralyzed arm….I didn’t like it….It was confrontational….I was one of them.

(female client, aphasia centre A)

Clients mentioned that after this first confrontation, they realize that they are not the only one; this offers them comfort, and they feel that they are understood and recognized. They give each other advice from their own experiences.

New clients can learn from clients who have visited the centre for a longer time and who have made progress. This is experienced as a very positive element by new clients, who see the more “advanced” clients as role models. This gives hope for improvement. One of them said to another client:

Look at you, in the beginning you could only say ‘yes’ and ‘no’ and now you can give a presentation in the rehabilitation centre. You are an example for me, truly.

(male client, aphasia centre B)

They all can help each other by using these strong abilities. Clients mentioned that they started to experience that they not only have disabilities but also strengths. Therefore, the group process not only provides possibilities for interaction and communication, but also is experienced as beneficial by the clients because it provides opportunities for hope, trust, and motivation. Also, it provides opportunities to help others and have a meaningful contribution.

Language is more than words: emotions and identity

Many clients mentioned that they experienced isolation and that not being able to express themselves had a big impact on the ability to make contact with the people around them. As a consequence, relationships changed or even came to an end. The spouse of one of the clients, a former school head, said:

It is hard, he liked to talk, discuss, spoke about politics a lot, and his work was a lot of talking and communicating. Now, that is not possible anymore.

(spouse of male client, aphasia centre A)

And a partner of a man in his 30s with aphasia expressed:

Most complicated are the conversations with friends, in which he wants to take the initiative and bring in a new topic. That is hardly possible.

(spouse of male client, aphasia centre A)

Clients and their relatives also expressed the essence of communication when expressing feelings and emotions. Clients must deal with a dramatic event in their life but cannot talk about it and express their feelings and emotions to loved ones. This makes it a double challenge. One of the clients tried to make this clear:

At home, is eh, venom. Because psychologically and emotions, and eh, bad mood and ups and downs, but eh, and the aphasia, that is double. So emotions and aphasia, pfff

(male client, aphasia centre C)

He expressed that there should be more attention for this in the aphasia centre. There should be more space for the relational aspect of communication and emotions instead of learning more words:

Being a human, less attention than learning words, and eh, that improves but being human gets worse.

Living with aphasia has deep impact on identity and who you are also became clear when a lady in her 40s made a collage about her severe aphasia. She expressed that with an image of a blurred person. She was very emotional when she showed this image (see Appendix). With help of the speech therapist, the image was accompanied by the phrase:

Not being able to talk: identity?

(female client, aphasia centre B)

Clients expressed that their self-image also is determined by the way people in daily life react. For example, on the phone or in public transport they experience that people do not have patience to help them. Clients also told about feelings that they were not recognized, for example, when people talk to their company instead of to them:

When I sit in my wheelchair and my wife stands next to me…they do not talk to me, but to my wife, about me….as if I am not there.

(male client, aphasia centre C)

Participation: paid work, social roles, meaningful time spent and contribution

The concept of participation was discussed in several group interviews with clients. Some clients mentioned that participation for them was not possible anymore. They associated participation with paid work and making a contribution to society. With grief they mentioned that this is no longer possible:

Difficult, difficult, difficult….

(male client, aphasia centre B)

Clients also expressed that they realize that they cannot fulfil the same roles they had before the brain injury. For many clients, returning to work is not possible but, for them, it is important to find new ways to have a meaningful contribution, in family or in society. Clients expressed that they find that the centre helps them search for ways to pick up their lives in a way that fits the possibilities that remain after the brain injury and that is satisfying for a person with aphasia. One client formulated:

I cannot do all activities, but I like to do what I can do. For example doing shopping. I have support for the things I cannot do, so in this way it works for me.

(female client, aphasia centre C)

Clients mentioned that coming to the centre helped them to pick up activities in daily life that they thought they couldn’t do anymore. Practicing these activities in the centre, like shopping, cooking, and travelling with public transport, helped them overcome barriers and build confidence to perform these activities on their own.

In the beginning, no talk. Now I can talk. Shopping, I can do it myself. And I cook.

(female client, aphasia centre A)

Clients associated participation with picking up (again) social roles in family and contributing to daily life at home: being able to do shopping, to cook, being able to do (sometimes new) hobbies, helping their child’s school, working as a volunteer, helping at their child’s sports field, being a granddad.

Clients also associated participation with meaningful time spent, having a goal, and being able to contribute. For example, being a volunteer at the centre was mentioned as a new goal to strive for because it was experienced as being very fulfilling. Furthermore, clients mentioned that it is important to be part of a group, part of a social bond, although they are not always able to take part in the activities as they did before. For example, one client talked about her sports club as an answer to the question of whether she is still running:

I cannot run 15 miles anymore. Being there, that’s important.

(female client, aphasia centre B)

Relatives’ perspectives on benefits for their partner and for themselves

As shown in some of the themes illuminated previously, relatives mentioned that their partner with aphasia benefits from the support and care they receive in the aphasia centre. For example, they reported that communication improves and their partner feels happier and more confident. It has broadened the world:

For me it is good to know that he is at a place where he feels good. When he comes home he has something to share with me, about what he has done or heard. And I see that his communication improves, thanks to the support of the professionals and the volunteers.

(spouse of male client, aphasia centre B)

The relatives also mentioned benefits for themselves. The centre gives them information (knowledge) about aphasia and practical help in dealing with aphasia in daily life. They also get support in how to communicate with their partner with aphasia. Like one woman said:

For me it is also support. They are always there to answer your questions. They have a lot of knowledge about aphasia, I really like it that they know so much. That you get support of professionals of which you know for sure that they have the right knowledge.

(spouse of male client, aphasia centre A)

The fact that their partner goes to the aphasia centre also gives relatives time and space to pick up their own things while their partner is at the centre. This is valuable, but all relatives stressed that this felt good in combination with a meaningful and nice place for their partner.

I could take a breath. He was always at work and now he was 24 hours at home. And I saw that he improved.

(spouse of male client, aphasia centre B)

Relatives also told of appreciating the opportunities to meet other partners of people with aphasia and to share experiences and practical information. Like the clients in the aphasia centre themselves, this peer-to-peer contact is experienced as supportive:

I experience the group for partners of someone with aphasia as positive, because a lot has changed in our lives as well.

(spouse of male client, aphasia centre A)

Discussion

One of the main findings of this study on the value and meaning of aphasia centres from the perspectives of clients and their relatives is that the centre itself offers a place for participation: working in groups provides opportunities to communicate with others (peers, volunteers, professionals) and to practice communication in a natural conversation setting. But, even more important, our study demonstrates the group is a way to meet other people, and offers a space to develop new interpersonal relationships and friendships. It helps to overcome feelings of isolation. This corroborates with existing literature on the beneficial effects of working in groups (Elman, 2016; Lanyon et al., 2013; Ross et al., 2006; Rotherham et al., 2015; Simmons-Mackie & Holland, 2011; Van der Gaag et al., 2005; Vickers, 2010). Also, the aphasia centre is a place where people can help each other. This goes either way: receiving help from others, but also helping other people yourself. Clients even can become volunteers in the centre themselves. This provides them with a new role and at the same time they become a role-model for other clients. This element of mutual support is also described in the other literature about aphasia groups (Elman, 2007; Elman & Bernstein-Ellis, 1999; Pound, 2011) and is in line with our findings related to the setup of Dutch centres. Helping others and making a meaningful contribution are important elements that relate to participation from the perspectives of people with aphasia (Dalemans et al., 2010; Hammel et al., 2008).

A second main finding is that in the safe environment of the aphasia centre, people with aphasia can practice their communication and can overcome shame and build self-confidence. This overcoming of shame and self-confidence is also described in other studies about the benefits of group related care (Rotherham et al., 2015; Van der Gaag et al., 2005). This self-confidence results in the courage to communicate in situations outside the aphasia centre, especially in social contact with family and friends. It is remarkable that, in contrast to the safe haven of the aphasia centre, clients describe the world outside the centre as going too fast. In this “tough world” is, to their opinion, not enough attention and understanding for people with ABI or aphasia (in line with Schipper et al., 2011). Although the centres try to contribute to participation in society, this is often a step too far for clients. Indeed, the centre helps to build self-confidence and people can overcome feelings of shame in their social networks, but still feel shame in relation to the societal context. This might imply that the norms in society are high and that people feel they cannot apply to these norms. These societal norms typically include norms about labour participation and being economically productive. This can evoke feelings of shame; one is not able to live up to societal norms. Despite efforts, apparently the support in the aphasia centres cannot easily bridge this gap.

Regarding our findings related to shame, the Shame Resilience Theory is relevant (Brown, 2006). Brown defines shame as an intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging (2006, p. 45). The main concerns of shame are: feelings of being trapped, powerless and isolated. From her point of view, shame is a psycho-social-cultural construct. The cultural component points to the very prevalent role of cultural expectations and the relationship between shame and the real or perceived failure of meeting cultural expectations. Here we can see how societal and cultural norms can evoke feelings of shame, as we found in our study.

The Shame Resilience Theory describes elements that help to overcome shame and decrease feelings of isolation (Brown, 2006). Shame resilience increases, when one is able to experience empathy and connection. Developing mutually empathic relationships is a critical element of shame resilience. The theory also indicates that being with others who have had similar experiences (peers) and talking about shared experiences is extremely helpful to overcome shame. This is exactly what we found in the aphasia centres, where working in groups with peers provided a context to overcome shame and develop resilience. Yet, in the wider social environment this may not be the case, hence the gap people experience.

A third main finding of our study is that support and care of the aphasia centres is highly valued by clients, but also by relatives. In the Dutch aphasia centres, relatives not only receive support regarding this communication, but they are also supported in their new role as partner of a person with aphasia. Aphasia effects their lives as well, they also have to find new ways to build up their live, together with their partner with aphasia. The aphasia centre not only provides them with time for themselves when their partner goes to the centre, but it also provides support and peer groups for their beloved one. Attention and support for relatives of people with aphasia is important, as described in former research (Rotherham, Howe, & Tillard, 2016; Van der Gaag et al., 2005; Visser-Meily, Post, Van Heugten, & Van den Bos, 2008). This becomes even more relevant in our current Dutch society, where more responsibility shifts to the informal care network to deal with rising costs of a population growing older. Support for relatives/family care givers can help them to build up their lives again together, but also to prevent burden of care. Recently, this notion of support and care for the partner and family of people with a chronic illness or disability is gaining more attention in the literature more in general (Harding et al., 2015; Vermeulen et al., 2015).

When we relate the experiences and perspectives of clients and relatives to the concept of participation we can conclude that the support of the centre is not only helpful to reach the goal of participation, but attending the aphasia centre embodies already meaningful participation for clients themselves. Participation is related not only to activities or paid work, but also to taking up meaningful social roles – ones that match with personal expectations – and also has to do with overcoming isolation and (starting to) connect and relate to others (in line with Dalemans, 2010; Hammel et al., 2008; Worrall et al., 2011). From this perspective, participation relates to the concept of belonging (Brown & Brown, 2003; Dalemans et al., 2010; Hall, 2010; Hammel, 2014; Kool, 2013). Brown and Brown (2003) use the concepts of “being, belonging, and becoming” in relation to participation. Being is about who you are, your authenticity, without having to adjust to standards of others or society. Belonging is about the connection to the environment and to other people. It is about feeling welcome, feelings of belonging to others, and about having your own space. Becoming refers to the activities of people and their personal goals, wishes, and aspirations. People want to grow, want to flourish, and want to have dreams. Life is not static but always developing. Looking at the aphasia centres from the perspectives of clients and relatives, we can see all these elements as values of the centres: being able to be who you are, connecting to others, and working on personal goals, wishes, and aspirations. From this point, self-esteem can increase, and clients can overcome shame and achieve new perspectives outside the centre.

Here the work of Hall (2010) on belonging and places that enable belonging is relevant. He refers to spaces where people with intellectual disabilities and mental illness can have feelings of being attached, belonging, and feeling valued. He calls these spaces safe havens. This is exactly how the people experience and value the aphasia centre; it is a safe haven, a place where you can be who you are, where you belong, and where you are valued. Belonging is based on relationships founded on shared experiences (Marcel, 2002).

Although our study has brought relevant new insights, there are also limitations. For example, others (professionals, relatives) were helpful in supporting communication for clients. We were alert that their support was an interpretation of what they thought people with aphasia tried to say. We tried to anticipate on this by asking the person with aphasia explicitly whether the person who supported the communication interpreted correctly what he or she tried to express. Furthermore, the purposeful sampling of the relatives brings up some concerns, because we selected them indirectly with the help of professionals. In retrospect we could have been more deliberate in our search for variety in terms of gender (for example selecting more male family caregivers). Although the described aspects can provoke some concerns, we used several quality procedures to strengthen our work and meet quality criteria (credibility, dependability, transferability and conformability) (Barbour, 2001; Lincoln & Guba, 1985). We used procedures to check our interpretations, like member check procedures. Although verbal-checking methods can be difficult for people with aphasia, we enriched our checks with non-verbal communication. We also used triangulation of data collection and focus group meetings for validation at the end of our project.

We did not collect and provide bio-medical background information about the participants. This relates to the fact that the starting point of our research was that we wanted to explore the experiences and meanings concerning the aphasia centre and participation among clients with aphasia and their relatives. We did not gather medical information, because former research showed that the experience of participation was not directly related to the factual severity of ABI (Schipper et al., 2011); it was rather the perception of one’s personal situation that influenced the participation experience. Without denying that our strategy has limitations, this issue provokes interesting epistemological questions related to our qualitative approach (Morse, 2008; Roberts, Code, & McNeil, 2003).

Bearing all this in mind, we experienced that it is possible to explore the perspectives and experiences of people with aphasia. It became a challenge when we tried to fit these perspectives in our current scientific frameworks. It made us aware of the verbal and rational orientation of scientific work and its requirements. This appealed to creativity and a constant reflection on the goals of procedures and the feasibility of using them with people with aphasia. We plea for researchers to make this extra effort in order to be able to get to know the perspectives of people with aphasia, to let these rich experiences guide us in more inclusive forms of research, and to attune support and care in health care and society to the needs of people with aphasia.

Conclusion

From our study we can conclude that aphasia centres are highly valued by clients and their relatives. Our article underlines existing literature about group support for people with aphasia and contributes to this, by focusing more specifically on the Dutch context.

In the Netherlands, on a societal level participation is related to societal norms regarding paid work and self-reliance. Also, responsibility is increasingly transferred to informal care to keep to welfare state affordable (Grootegoed, van Barneveld & Duyvendak, 2014). In this societal context, the aphasia centres are even more relevant for people with aphasia ánd their relatives. The support in the centres are a big step stone towards participation and contributes to this goal. This indicates that participation and support are not opposites, but that participation is fostered when there are helping hands, either from informal and/or formal caregivers. Paradoxically, however, care and support in the chronic phase of aphasia are reduced by financial cutbacks and effects and rational outcome measures are increasingly used by healthcare organizations to “prove” their effectiveness to external stakeholders like insurance companies and inspection. Especially the valuable outcomes of participation in the light of being and belonging are hard to measure, while these elements are of utmost importance from the perspectives of clients and their relatives (Mahar, Cobigo, & Stuart, 2013). Also, clients feel it is hard to meet societal norms of participation, framed as paid work and independency and self-reliance. This makes it harder to overcome feelings of shame. For their relatives, there’s a risk of burden of care when support and care in the chronic phase is reduced. They benefit the support from their own role as informal care giver as well.

For the support and care in aphasia centres it is important to be aware of the impact of these societal developments and the gap towards more societal participation for their clients. Especially in a societal context where participation is expected from all citizens, this valuable care for people with aphasia and their relatives should be available. For health care policy it is important to reflect on the concept of participation and the societal norms and obligations it generates. Attention should be paid to the perspectives of clients and relatives concerning participation and the value of being and belonging.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the former Dutch Aphasia Association, now Dutch Association for People with Acquired Brain Injury (ABI) and Aphasia [2001139].

Appendix

Translation: Not being able to talk: Identity?