Accompanying citizen of persons with traumatic brain injury in a community integration project: An exploration of the role

2.1 Accompanying people with disabilities

There are several types of programs that pair individuals with disabilities with people that accompany them in order to foster integration, such as coaching, counselling, tutoring, consulting, mentorship and sponsoring [4, 12]. This type of support also exists in therapeutic contexts, where it is generally defined as an interactive process that helps a person set, choose and achieve goals [13–16]. The study of these various programs allows us to establish common foundations to define citizen accompaniment, such as openness and empathy towards others, respecting differences, and mutual tolerance and acceptance [12, 17–20].

These different support projects vary according to their environment, the objective of the intervention, and the relationship that develops between the individuals involved. However, McColl et al. [2] underlines the importance of respecting self-determination and the real need for supervision of people with disabilities. The citizen approach yields a different kind of accompaniment since it encourages an equal relationship between accompanier and accompanied and favours mutual sharing and learning. The people who are accompanied are actors throughout the process because they make decisions regarding the activities they perform and participate in them in an autonomous way. The CA offer support and are not responsible for intervention objectives established independent of the accompanied person’s wishes. However, few studies have specifically focused on this type of accompaniment program.

First, Johnson et al. [4] proposed a volunteer accompaniment project to facilitate social contact for people with a TBI through participation in recreational activities. Each of three persons accompanied was paired with four civilian volunteers that they would meet individually for four weeks. This empirical and followup study utilize frequency of integrated social contacts and analysis in a multiple baseline design across participants. The authors address the accompaniment process, the support offered to the CA, as well as the impact on the accompanied. The experiences of the CA are not really discussed. They conclude that this type of intervention can be useful to increase social contact and recreational activities for people with a TBI.

A second project, the Citizen Accompaniment Project for Community Integration (APIC) [5, 21], offers support by paid volunteers who are trained on the subject of TBI. In this study, meetings take place every week for a three-hour period over a year. The CA and the accompanied take part in various personal, cultural, athletic or social activities together (for example, go for a coffee, prepare a meal, visit a museum, or play badminton). Until now, study of this program has mainly focused on the accompaniment process [18] and on benefits for the individuals with a TBI [5]. Little attention has been paid to the CA and the challenges they face. In this article, a look is taken to APIC project with particular attention to mental health of CA during the process.

4.1 Design

This is an exploratory, qualitative study based on the analysis of eight interviews conducted with the CA following the first year of project implementation. This data is part of a larger project aimed at the implementation and evaluation of a citizen accompaniment program.

4.2 Sample

Of the nine people who have worked as CA on the APIC project during the 2009-2011 period, eight took part in an interview in spring 2011 to discuss their experiences. One person could not be reached to conduct this final interview. The CA are mostly women (7 out of 8) and had an average age of 26.6 years at the time of their hiring. They were all students registered in an academic program related to health and human relations (psychology, social work, nursing), not professionals in therapeutic accompaniment.

In the process of APIC, a CA is paired with supported person. Accompaniment is done for the achievement of daily and recreational activities. The CA is with the person once a week. Accompanied is involved in the process by having the power to decide on activities carried out. Most CA are paired with one accompanied.

4.3 Data collection

Individual, semi-structured interviews were conducted. The interviews were conducted by a research assistant in the three weeks following the end of a support which had a duration of six months. Audio recordings were made and then transcribed into verbatim.

4.4 Data analysis

The data were analysed according to the rules of thematic content analysis [22], which encourages grouping main ideas into categories. The categories were created according to the research objectives and the content of the interviews with the aim to better define citizen accompaniment through the experiences of CA. This is an iterative process allowing for the constant emergence of new categories during the analysis. The categories were coded using the qualitative analysis software QSR N’Vivo 9.

4.5 Data validation and credibility of results

A summary of the main points raised during each interview was written to offer an internal validation of the identified themes. The categories of analysis were reviewed and discussed by the analyst and the main researchers.

6.1 Difficulties associated with the individual’s environment

Accompaniment involves integrating into the accompanied person’s environment, including their neighbourhood and home, and sometimes meeting their loved ones or others who work with them. This contact is beneficial when it allows the CA to obtain answers to questions or when these people act as motivators for the accompanied. In most cases however, this contact is limited or non-existent. These actors’ lack of knowledge concerning the project can limit collaboration. On the other hand, the power some of them have over the accompanied, particularly in preventing them from taking part in activities, can disrupt the process. When faced with this situation, some CA are discouraged and feel alone. For example, this situation highlighted by CA: “the mother was not very supportive. (...) So what’s the point in telling him he can do it? (...) It was hard feeling like others didn’t believe in his potential”1. These actors sometimes interfere in the process by setting objectives they feel are important and are at times hard to reconcile with the goals of the accompanied. These situations create confusion regarding the AC’s role and put pressure on him/her to get results. Their role starts to resemble that of an intervener but without having the necessary tools and training.

6.2 The characteristics of the accompanied

The attitude and behaviour of the accompanied can become obstacles to the process. Lack of motivation or initiative can become apparent when they repeatedly cancel appointments, or experience difficulty in setting goals. These situations are sometimes due to the fact that the accompanied were pushed intoparticipating in the project by a third party and it does not meet their needs, as reported by several CA’s and well-illustrated in this regard: “It never comes from him, always from others. And this is where the problem lies because ultimately, this isn’t something he actually wants”. Several sequelae of a TBI, such as aches, memory loss, personality disorders, fear of being judged, or emotionality, can affect the accompanied person’s ability to carry out activities. It is sometimes difficult for the CA to distinguish personal disorders due to the TBI and those that were present before the injury. In the medium- to long-term, the CA can become exhausted and demoralized, as a result of the accompanied person’s difficulties.

During a crisis, the accompanied can put themselves in dangerous situations creating important risks for the CA who might not always know how to react. They might be afraid to aggravate the situation by word or deed. An CA explains: “Suddenly, she starts throwing a fit, and I was panicking because she was almost in the street, crying (...) she said, ‘I’m going to throw myself in front of a car”’. This stress and feeling of responsibility in the face of imminent danger affect the CA’s mental wellbeing. Some CA expressed unease at being seen in public when the accompanied say or do something considered socially inappropriate, such as angry outbursts or uttering racist comments.

6.3 Personal characteristics of the accompaniers

The CA are aware that their own attitudes or actions can be obstacles to a successful accompaniment, such as a lack of motivation or patience in certainsituations. Generally, these instances are isolated and in reaction to specific events. They usually can be resolved with time or by steps taken. However, some CA “give up” when faced with the apparent failure of the accompaniment. These situations can lead to feelings of uselessness or futility, like: “I felt like it was pointless. Then, I found it very difficult and I would tell myself ‘why am I here, what’s the point?”’.

The CA need to pay attention to the needs of the accompanied to avoid tensions, for example, when the accompanied feel pressured to take an unfamiliar approach. Achieving the goal can become so important for some CA that they get frustrated when the accompanied is not as motivated as they are. Witnessing the daily challenges the accompanied face presents the CA with a reality that is very different from their own. “I found it very hard, it was intense. I had...I didn’t understand how difficult her life was, everything she has to bear, it’s crazy. It affected me”.

One of the goals of the accompaniment program is to encourage the accompanied to discover activities using resources in their environments. Some CA were worried their involvement could jeopardise the psychological or physical health of the accompanied. Some wondered about the impact of repeated encouragement if the accompanied did not achieve goals. They worried that the activities could present a danger to the accompanied person’s physical health. The following excerpt illustrates this constant tension between the CA’s feeling of responsibility and the need to respect the accompanied person’s self-determination: “She absolutely wanted to go to the pool, (...) but she can’t go by herself. (...) I was telling myself: ‘this is it, we choose an activity and she’s going to drown.’ (...). But at the same time, it’s her life, and I have no power over it (...). Ultimately, this is what she wants, not what I want. So in the end, it is her decision”.

Several CA point out difficulties that they attribute to an incomplete understanding of their role, differing views on the way to reach the chosen objectives, and a lack of information on TBI. These difficulties are usually present at the beginning of the accompaniment, when the CA have yet to develop strategies to overcome the obstacles. Consequently, adequate support and guidance are necessary.

6.4 Difficulties associated with the relationship with the person with a TBI

In some cases, trust is quickly established from the beginning of the accompaniment, but in others, it may take weeks or even months. This trusting relationship has been shown to facilitate the success of the accompaniment. Difficulties in the relationship remain after the initial accompaniment period. For example, the CA were uncomfortable discussing certain subjects, such as sexuality: “I am uncomfortable talking about those subjects, especially with a man of that age”. Proximity can lead to the development of ambiguous feelings in the accompanied for the CA. Examples ranged from a friendship that is too close, to admiration, to love: “It’s happened several times during the project, I felt uncomfortable, there was some ambiguity, in fact (...) in his feelings, (...) like he was in love with me, or feelings (...) of admiration. In any case, sometimes, it was ambiguous. I didn’t really know what to do, I was a bit embarrassed”.

The lines of relationship boundaries are blurred in the minds of several CA, who are unsure what they should reveal of themselves and how much they should be involved in the person’s private life: “I didn’t know how far I should go, (...) where I needed to draw the line. If I had spoken with the social worker, maybe I would not have gotten involved in things that weren’t any of my business. So I was a little vague, the lines were blurred”. The end of the accompaniment is a delicate time that requires proper support and preparedness to avoid a feeling of abandonment or the impression of not seeing the project through to the end.

The results in this section illustrate the difficulties that are at the heart of the accompaniment. They force the CA to develop numerous strategies to ensure the success of the accompaniment, avoid problems, and protect their own health.

To face these difficulties, the CA develop several strategies, individual or collective, to allow them to overcome obstacles and promote the success of the project. Two types of strategies were outlined: collective strategies and individual strategies.

6.5 Collective strategies used by the accompaniers

The CA use collective strategies, for example, confiding in others and using outside resources in an attempt to overcome obstacles. Contact with the coordination team, as well as monthly meetings between CA, are opportunities to share experiences, anxieties and questions, and to find practical solutions to problems. “The meetings we held really helped. Often, I left them knowing everything the others did, all the good ideas (...) Every time there was a meeting, I felt like I was back on track”.

Collaborating with community organizations is a way to build ties to help the accompanied pursue objectives and activities following the end of the program. Others who know the accompanied well can offer support and advice to the AC to addressquestions and concerns. Their own networks, particularly friends and family, can listen and offer an external view of the situation and problems encountered during the accompaniment.

Nearly half of the CA see the development of trust in relationship with the accompanied as an important factor in the success of the accompaniment. This trust represents a unifying factor built over time and allows the CA and the accompanied to move forward together. This quote highlights the importance of building this relationship: “The only winning strategy with him was our bond. It’s really that, to never laugh at him or discourage him, to listen to him complain, over and over, always about the same thing. But that’s what he needed, I think, for him to be able to explore things after”.

6.6 Personal strategies used by the accompaniers

Throughout the project, the CA develop personal strategies for encouraging the individuals to act, think or decide for themselves. This can be accomplished by turning questions around or asking the accompanied to express thoughts on certain subjects, like: “What do you think? Come on, you can do it”. Some CA use more supportive and guiding practices, such as suggesting activities or offering advice and opinions on situations. Participating in the same activities and using reminders are ways to facilitate the integration of new things and to develop memory. Encouraging others, maintaining a positive attitude, and showing enthusiasm are strategies that can help the accompanied sustain efforts and carry out activities.

The urgency of a dangerous crisis situation or the reoccurrence of negative behaviours would require more authoritative strategies. A more assertive strategy used by an CA is describe here: “I decided to make things clear. (...) That time, I opted for the direct approach. So, like a mother, really strict [I said:] ‘that’s enough.’ And it upset him at the time, but it worked”. In other crisis situations, a calm approach and discussion were found to work better. Setting limits with the accompanied by addressing worries, fears or disagreement with some actions or words, represents a way to avoid ambiguity and uncertainties.

The ability to step back and let go of situations lived during the accompaniment helps limit the psychological risks for the CA. Writing in a journal is a way for the CA to vent emotions and frustrations. When these methods are no longer enough, taking a break from the accompaniment, for example by taking a vacation, can help re-motivate.

The objective of these collective or personal strategies is to promote the success of the project and avoid excesses, which could result in risks to the mental wellbeing and physical health of the CA.

The process will have a positive or negative impact on the CA, influenced by the difficulties lived and the effectiveness of the strategies used.

6.7 The impact left by the accompanier

At the end of the project, the feeling of abandoning the accompanied is particularly difficult for some: “There was a negative aspect, but only at the end because I thought it was a shame to end the accompaniment, it was a bit sad. I felt a little like I was abandoning him because he would ask: ‘but why is this ending? Why can’t we continue?”’. Some CA share a feeling of failure when faced with the difficulties associated with accompaniment or the disengagement of the accompanied. Others were angry or frustrated at the lack of social or professional support available to the accompanied by society. These difficulties can lead to exhaustion that can affect the CA’s private life: “I was frustrated by some aspects of accompaniment. I mostly dealt with it alone, during and after. I would tell myself, ‘Oh, this is hard.’ And it affected me a lot, my mood. I would leave there completely drained, exhausted”.

Several CA said the experience left a positive impact, such as the assimilation of knowledge and experiences that could be useful in future jobs. Others feel the experience made them grow by developing personal qualities and gaining self-confidence. Pride in helping another person, the impression of usefulness, and a feeling of self-worth are important positive impacts on the CA. “Each time I accompanied him, I felt I had helped someone. (...) It’s a feeling of doing something meaningful because it’s not just a job where you’re bagging groceries”.

7.1 Better defining the role of the citizen accompanier

The CA must be in a position to offer the accompanied support without deciding what is best for them. This role has to evolve in a framework but with only a minimal amount of formal training. It is as a co-citizen and not as a human-relations or health professional that they will fulfill their goals. One of the essential foundations of citizen accompaniment is respecting the choices and desires of the accompanied. Simply recognising this right to self-determination does not simplify the task. It is important for the CA to be aware of the distinctive context of citizen accompaniment.

A clear and concise definition of citizen accompaniment is especially difficult because, as noted by Bartholomé & Vrancken [23], it is an individualised practice that responds to the accompanied person’s life plan. The content of the accompaniment is not pre-defined and develops over time.

It is important to identify the principles that will help circumscribe and specify the parameters of this practice rather than seek to define it. We can identify three major avenues for reflection to understand the role of the CA: 1) finding the “right balance” in the relationship with the accompanied, 2) taking into account all the actors in the process, 3) putting the accompanied person and his/her desires at the heart of the practice. In addition, two important factors must be taken into consideration when developing the CA role: 1) accepting that no one has all the answers, 2) getting involved while recognising the potential for transformation.

7.2 Citizen accompaniment viewed as a craft

The five avenues listed above help identify unique paradoxes and challenges specific to the citizen accompaniment process. From this perspective, Stiker et al. [15] present accompaniment as a type of craft. Just like in art, one simple solution does not exist to create a successful accompaniment. Some techniques or basic knowledge can be shared with the CA, just like with an artisan, but this does not guarantee the success of their work. The precise steps cannot be dictated because citizen accompaniment involves dealing with different unique components, people, and circumstances with the goal of creating something beautiful and successful. Citizen accompaniment must be built and made like a work of art and the process requires time. The final end result is not known beforehand in citizen accompaniment. Time and particular attention must be given for the “precious object” to develop its value.

7.3 Limits of the study

First, the interviews held at the end of a year of accompaniment asked the CA to reflect a posteriori on a process that unfolds in the present and in action. The analysis of the journals, written each week by the CA, could offer another perspective on the immediate process. Second, observations cannot be generalized since it is a qualitative study involving a small sample. Finally only one method was included to the methodology to ensure credibility of the study results.