Everyday activities outside the home are a struggle: Narratives from two persons with acquired brain injury

Abstract

Background: Participation restriction is a common consequence after acquired brain injury (ABI).

Aim: To explore and identify problematic situations in everyday activities outside the home for persons with acquired brain injury.

Material and Method: Two persons of working age with ABI were included. Data were generated through repeated semi-structured interviews and participant observations. Narrative analysis was used to capture ongoing processes related to problematic situations during engagement in everyday activities outside the home.

Results: The narratives reflect how places, everyday activities and social relations were closely connected and influenced engagement in everyday activities outside the home. The participants visited fewer places and performed more of their everyday activities alone in their homes after the injury compared to before. They were struggling to create meaning in their lives and trying to reformulate their identity. Problematic situations often occurred outside the home as a result of unexpected events. The narratives indicate a struggle to find new routines to handle challenging situations.

Conclusions: The results provide an understanding of how problematic situations occurred and were managed in different ways. By observing everyday situations professionals can gain access to how persons with ABI act in and reflect upon problematic situations which can eventually improve the design of individually tailored interventions.

Keywords:

• Brain injuries
• identity
• meaning
• narrative
• problematic situations
• transaction

Introduction

Participation is described as the overall goal of rehabilitation [1,2] and occupational therapy service [3]. From an occupational therapy perspective participation is facilitated through engagement in meaningful activities and is assumed to promote health and well-being [4]. Important aspects of participation are people’s possibilities to engage in everyday activities outside the home and to take part in society [3–5]. However, for people with disabilities such as an acquired brain injury (ABI), participation restriction is a common consequence [6,7]. The injury can lead to drastic changes in their life requiring them to negotiate previous habits and routines and to create strategies to manage everyday activities that are meaningful to them [8]. Regaining or developing valued roles and new self has been described as an ongoing struggle [9], and a common consequence is to experience uncertainty in everyday life and a struggle to cope with the new life situation and adaptation process [8–10]. Furthermore, participation in society and engagement in activities outside the home, such as social and leisure activities has been described as challenging [11–14]. However, little is known about how people with ABI manage on-going changes that occur during everyday activities outside the home and the strategies they use to support their engagement.

In a previous study of people with ABI [15] findings indicated that everyday activities outside the home, such as grocery shopping, taking the children to pre-school and visiting friends, were part of an on-going process, including preparatory and subsequent tasks. Moreover, everyday activities outside the home cannot be considered in isolation. Rather, they must be considered in relation to the person’s entire repertoire of activities in comparison to before the injury. However, little is known about the problematic situations that occur during engagement in everyday activities outside the home. To promote such engagement among people with ABI, a better understanding is needed of the complex and on-going processes they are facing. Furthermore, we need to know more about how they act in different situations they consider problematic.

To understand the complexity of on-going processes and interacting conditions, there is a need to focus on the situated nature of everyday activities. A transactional perspective [16,17] has been suggested as a way to understand everyday activities as situated, connecting person and context through action. Focusing on situations provides a way to view the on-going interplay between person and place and thus a potential understanding of problems that can occur when people with ABI engage in everyday activities outside the home, e.g. to comprehend problematic situations. As interacting conditions vary depending on each situation, problematic situations can be difficult to predict and therefore challenging to handle.

To grasp on-going processes and gain access to transactional dimensions of everyday activities, a narrative approach [18] was used in this study. A narrative approach focusses on how human action and experiences are connected to processes that generate meaning and how meaning is negotiated and developed in everyday situations. In this research, we grounded our understanding of narrative as stories that are both told and lived [19,20] and used a narrative-in-action approach [19] to participate in real time actions in which meaning-making occurs. Therefore, a transactional perspective and a narrative approach were used in this study to extend understanding of complex and on-going processes and problematic situations that occur when persons with ABI engage in everyday activities outside the home. In the present study, everyday activities outside the home were considered an on-going process, including preparatory and subsequent tasks. The aim of this study was to explore and identify problematic situations in everyday activities outside the home for persons with ABI.

Materials and methods

In this qualitative study, we used narrative as a theoretical resource and an analytical tool [19–22] to explore everyday activities outside the home. Furthermore, we used a transactional perspective [16,17] to understand the situated nature of everyday activities. The findings in this study are based on data from two participants. This allowed for the presentation of a contextualized in-depth story consistent with a narrative analysis [21].

Participants and recruitment

To answer the aim, we used the stories of two persons with ABI to demonstrate how they acted in and reflected upon problematic situations. The participants, Sara and John (pseudonyms) were recruited purposefully [23] from a larger data generation used in an interview study published elsewhere (blinded for review). However, additional data were generated to address the aim of the present study. Sara and John were chosen for this study because their experiences illustrated, in different ways, how they faced problems when engaging in everyday activities outside the home and how they handled them differently.

Sara and John are in their 40s; Sara is living with her partner, a daughter and a dog, while John has separated after his ABI and is living alone. At the time of the study, none of them worked, they were on sick-leave. Both of them described a reduced engagement in activities outside the home as well as a shrinking social network following the ABI. They have been living with the ABI for approximately three years at the time of inclusion for this study. Both of them are experiencing fatigue and cognitive impairments such as difficulties with attention and memory but no physical impairments following the ABI. At the time of the study none of them received any rehabilitation or support from social service in their everyday activities. However, they received rehabilitation during the initial time after the injury. Sara´s and John´s names and some related information were changed to ensure confidentiality. They both provided informed consent to participate and were supplied with oral and written information about the study. Ethical approval for this study was provided by the Regional Ethical Review Board, Umeå Sweden (Dnr. 2014/166-31).

Data generation

Data generation was an on-going process, conducted by the first author through repeated interviews [24] and participant observations [19] with one form of information complementing the other. In total, data was generated on five occasions with Sara and four with John. Data generation was conducted over time from autumn 2014 until spring 2016.

The interviews were guided by open questions consistent with the narrative inquiry [21]. The participants were asked to described how they experienced their engagement in activities outside the home and how their engagement had changed after the ABI with focus on situations that they experience as problematic and how they handle them. In total, seven interviews were conducted, each interview lasted between 60 and 90 minutes and was, digitally recorded and transcribed verbatim. The interviews were performed in a flexible manner, which allowed the participants to elaborate on issues they considered significant in relation to activities outside the home. They were encouraged to talk about different aspects of these situations and to describe their experiences freely with the intention of capturing their stories. This strategy facilitated natural conversations and opportunities for the participants to reflect on their current situation in relation to their past experiences and their thoughts about their future engagement in activities outside the home. It also allowed the first author to raise questions to improve understanding and acquire rich data.

The observations of the participant were guided by a narrative-in-action approach described by Alsaker, et al. [19]. This approach enabled the researcher to take part in real-time actions in everyday situations. The observations occurred during everyday activities that were chosen and initiated by the participants such as taking a walk in the neighbourhood, grocery shopping, and having lunch at a restaurant. Observations also occurred in the participant’s home where the activity was initiated before going outside and when performing subsequent tasks. The observations facilitated natural conversations and created opportunities for the participants to reflect on the situation, which introduced richness to the material. Field notes were written after each encounter following the guidelines of Holloway and Wheeler [25], focusing on the events that had transpired and the subjects that were discussed, as well as the reflections of the first authors on the situation.

Data analysis

A narrative approach [20–22] was used to analyse data from interviews, observations and informal conversations. The first author initiated the analysis by reading the transcribed text from all interviews and field notes to comprehend the stories as a whole for each participant. Different events and situations were then identified and discussed between the first and the last author to determine their significance for the aim of the study. Significant events are described as parts of stories that are meaningful to the person telling them in some way [22]. These events and situations were then separated from the text and different interpretations were presented in discussions between the first and the last author. During this process of emplotment [20], the authors sought to understand how different events were linked and define connections of cause and influence among them, with an emphasis on how problematic situations occurred and how they were handled in different ways. Tentative analytical propositions were developed, and the analytical procedures were guided by the principles of the hermeneutic circle, moving between parts and the whole, and between the empirical text and reflections, to develop possible plots and storylines. During this phase, we asked analytical questions such as the following: In what situations do problems occur? Why do they occur, what happens? How are these situations handled? What actions are undertaken? What are the reactions and subsequent reflections of the participants? At this point, theories and literature about identity, meaning and place were introduced into the analysis. The material was re-interpreted several times in discussions between all authors and several drafts were written during the construction of the stories. In this study, interpretations were based on empirical material and theoretical resources, and they were grounded in the pre-understandings and experiences that the authors have as occupational therapists and researchers experienced in qualitative methods and research on persons with ABI. The storied outcome presented as findings must be viewed as co-constructions between the participant and the researchers following the reasoning that narratives are socially constructed [20,22]. Consequently, the results present just one of many possible interpretations and are the authors´ interpretation of the two participants´ stories.

Results and discussion

The different encounters with Sara and John provided access to stories that extended from their past experiences to their on-going actions as well as their thoughts and reflections about future events. In this section, the findings are presented as an overall plot “Trying to live as before is not an option”, which symbolizes and represents various processes in Sara and John´s daily life. This plot will be further elaborated through the use of two narratives encompassing storylines from Sara and John. These storylines illustrate how they negotiated issues regarding their habitual manner of functioning. Everyday activities that they previously performed on a routine base as part of their on- going daily rhythm, now required a lot of attention and consumed energy. Further, unexpected events interrupted and disturbed the on-going rhythm. Thus, Sara and John were struggling to control different situations to succeed everyday activities outside the home.

Trying to live as before is not an option

This overall plot symbolizes various processes reflecting how Sara and John struggled to find new ways to engage in everyday activities outside the home. These processes encompassed decisions to be considered and reflected upon in relation to previous life and thoughts for the future. They were, in different ways, negotiating issues of being like anyone else or like they had been before the injury. By taking part in their stories, it became clear that many previous valued activities had become too demanding and that they were not engaged in everyday activities outside the home to the same extent as before or as they would like to be. A drastic change in their daily life was related to not being able to work any longer. We understood how important their work had been and the meaning it held for them. Employment was associated with feelings of being like anyone else, being part of a social context and having a role to fill. As stated by Sara, “My career stagnated, because I did not dare to take on new tasks in the same way as before. I was afraid I wouldn’t manage … now I don’t know how I will manage to go back to work at all”.

Initially, (soon after the injury) both Sara and John had hopes of being able to engage in everyday activities outside the home to a larger extent to fill the time with other meaningful activities. However, not being able to return to work in addition to reduced engagement in everyday activities outside the home became a threat to their identity and affected their sense of ordinariness in daily life. They were struggling to leave their old self behind and trying to create a new structure for their everyday activities. John expressed, “I constantly have to struggle with not being able to do things as before. I have to avoid being the old me because that’s not possible”. The literature describes identity as closely connected to the creation of meaning in daily life [26,27], and there is a need to reformulate one’s identity when previous visions of life are no longer realistic [28]. Based on our interpretation, the stories of Sara and John mirror how meaning-making is an on-going process connected to redefining identity arising from engagement in everyday activities, especially those outside the home. During various encounters with Sara, she was trying out different scenarios envisioning employment again in the near future. Simultaneously, she expressed uncertainty about how it would be possible to fit a job into her daily routine. Sara said, “Today, I cannot imagine how I would manage both working and being an engaged and happy mother, at least not working full time”. Sara’s reflections can be viewed as an example of how the process of meaning-making is closely connected to how a person interprets and reflects on experiences and actions. Furthermore, how the process of negotiating meaning is central to reformulating and redefining one’s identity e.g. [20,22].

Being unable to live as before also mirrored the challenges experienced by both Sara and John when trying to engage in social events and situations. Previously, they engaged in a variety of activities and social contexts together with friends and family. Now, it was no longer possible for either of them to join their friends for sporting events or at the pub. They described these kinds of places as noisy and distracting environments, presenting too many sensory impressions that they could not predict or plan for in advance. As a result, their social world was shrinking; they visited fewer places and performed more of their everyday activities at home and alone. By taking part in their stories, we understood that their experience of meaning connected to their engagement in everyday activities outside the home had changed. They were also no longer engaged in a variety of meaningful everyday activities. Rather, their engagement was now more or less restricted to activities that needed to be performed at the expense of activities of their choice, e.g. self-rewarding and meaningful activities. Consistent with these observations, the literature [29,30] describes how meaning is connected to a person´s need for a sense of purpose in daily life, the importance of relationships, for rediscovering oneself and for being able to envisage future possibilities. Previous research [31] also describes how daily life after ABI is a time of transition, reconstructing everyday activities in new ways to enable engagement in meaningful activities and social inclusion. When John spoke about his current social activities, he says that weeks can pass without him meeting his friends. Previously, he was engaged in many different social activities together with his friends based on a reciprocal responsibility. However, now he says: “They often invite me, but I usually say no because they expect me to participate in the same way as before and it`s not possible. They think I´m boring because I don’t want to do anything; that’s why I have withdrawn and keep to myself more or less”. This statement from John of altered social relationships and not being understood by others is also found in research investigating people with ABI [7,32] and chronic disease [33].

Taken together, this overall plot shows how place, everyday activities and social relationships are closely connected. Based on our interpretations and consistent with a transactional understanding [16,17], these findings emphasize the importance of considering the interconnectedness of person and place and how they changed in relation to one another over time. Furthermore, findings illustrate how meaning-making was a process negotiated through everyday activities [20,22]. In the forthcoming two narratives, we will elaborate on how living life as before was not an option by providing examples of how problematic situations occurred and how Sara and John, in different ways, were trying to negotiate issues to handle these situations and create meaning in their everyday activities outside the home.

“Upholding everyday routines is a struggle for me”

Before brain injury, Sara described herself as a fulltime working person with many responsibilities. Previously, in addition to working, Sara stated that she had many interests, many of which were associated with outdoor life. She spent much time in nature for enjoyment and recreation, and she said that this was something she rarely did anymore. She talked a lot about how she was struggling to find new routines to manage her everyday activities. Previously, her routines were embedded in her roles and were more flexible. She was able to handle changes related to everyday activities and the environment. After the ABI, her previous way of doing things was no longer working and she carefully needed to plan her days and focus much attention on her activities. Sara told the first author that nothing worked automatically anymore, which consumed much energy from her in terms of mental effort. As a result, in contrast to previously, she rarely spontaneously engaged in everyday activities. We understood this as an example of how activities that previously had been performed routinely in the background of daily life now had become activities that required consciously planning and attention. This can be comprehended as an example of how previously “hidden” activities becomes “main” activities as described by Erlandsson [34].

Sara was living in a relationship and had a pre-school aged daughter for whom she was responsible, so her habits and daily routines were, to a large extent, driven by and continuously changing due to her daughter’s needs. Being a mother of a child required her to incorporate routines for new activities. She explained, “When I look back, the first couple of months as a mother were quite tough. I was not in control of anything, I had to adjust to my daughter´s needs and they didn´t follow any schedule. I could not rest when I was tired and could not plan for anything. Now that [her daughter] is a little older, every activity needs to be carefully planned so I can uphold some routines during the day. However, new activities keep coming up which makes it hard”. One such example was when Sara described that her daughter had recently begun pre-school. Although this allowed her some time to rest, it also meant that she needed to create new daily routines with a specific schedule. Consequently, she also had to create new patterns for other activities that needed to be performed during the days when her daughter was at pre-school. On the one hand, she needed routines to be flexible because of her daughter´s needs; on the other hand, the consequences of the ABI required her to develop organized routines. Developing organized routines that followed a time schedule, including time for rest was a strategy that Sara established to manage her everyday activities even though she sometimes could not uphold them. As described in the literature [35], habits and daily routines arise from engagement in everyday activities, and the more alternatives we have at our disposal the more opportunities we have to act in various situations. Based on our understanding, it was difficult for Sara to create daily routines that she rely on to be stable and at the same time, be sufficiently flexible to handle the changing situations that she faced.

“I´m trying but there is always something interrupting”

Sara had been and still was facing problematic situations when engaging in everyday activities outside the home. She wanted to be able to engage in different activities in different places, and as a result she was trying but kept encountering problems that she could not predict despite her strategies of trying to plan ahead and prepare for the activity. Unexpected events that interrupted her on-going activities now became more challenging to handle and were experienced as hassles because she was more sensitive to noisy and distracting environments.

During one encounter when the first author was having lunch with Sara at a restaurant, the author could observe that Sara was disturbed by sounds and activities going on in the restaurant. She had a hard time to concentrate and was unfocussed during the conversation. This was something that Sara also confirmed and she described a similar situation that had occurred a few months prior when she was having dinner with her husband. She said, “I had made reservations for a specific table early in the evening because I thought it would be quiet and less people. However, when we got there it was already very busy and we did not get the table that I had reserved. We ordered the food and because there were so many people, I could not focus on having a conversation. We had our meal and then we went home. Really sad because it was supposed to be a nice evening together”. This situation provides an example of how problematic situations can occur as a result of unexpected events and Sara provided many such examples. Based on our interpretation, Sara had planned ahead and flexibly adjusted the time of the restaurant reservation thinking it would not be noisy early on in the evening. Even though she was planning ahead, environmental distractions occured that she could not predict and plan for. Like in Sara’s case, previous research [36] described how persons after brain injury were struggling to take control by planning ahead and avoid exposure to situations in which excessive noise might be encountered.

Other situations that Sara experienced as problematic and out of her control were related to pre-school. She said, “When I leave and pick up at preschool it happens that other children, parents or teachers take my attention away from what I was supposed to do. In these situations, I lose focus and it happens that I forget my phone on a shelf, forget to bring my daughters clothes and just walk away. It is not until I come home that I realize what I have forgotten. Then I have to go back again”.

During the encounters with Sara, she often expressed how frustrating it was to face situations that were out of her control and how different events could disturb the activity despite thorough planning. For example, grocery shopping was an everyday activity that she performed on a regular basis, most commonly at the same supermarket. A strategy Sara used when shopping was to plan ahead what groceries she needed and to write a shopping list. Sara explained that before the injury, her grocery shopping occurred more spontaneously. Although the store was a familiar place, problematic situations occurred because of unexpected events. For example, they often rearranged and changed the places of the groceries in the store. Another example she described was that her husband could call and ask her to pick something up on the way home. Sara described how such events could disturb the entire activity, resulting in forgetting groceries, or worse, leaving the store without any groceries at all and having to start the activity all over again on a later occasion. As shown, the different problematic situations that occurred were often related to unexpected events and, in Sara’s case, led to feelings of lack of control. These findings can contribute to an understanding that adds to current research [34,37] of how unexpected events can disturb on-going actions and interfere with the rhythm and pattern of everyday activities.

When Sara provided the above examples, it became clear that when she could initiate, plan and perform an activity by herself, she could to a large extent remain in control provided that no significant distractions occurred. However, she lost control when someone else initiated something new during her engagement. She often talked about not feeling competent in the performance of her role, yet it was clear that she highly valued her role as a mother and that it was a way for her to feel competent. “I can say to myself; I have to leave now, I cannot make it but in a way it is not so bad after all because at least I’m capable of taking care of a baby”. It has been shown [33] that role confidence and feeling capable are important parts of the adaptation process and in reformulating one´s identity. Furthermore, competence is described by Kielhofner [28] as the capacity to fulfil one´s identity and meet demands in a personally satisfying manner.

“I have no choice but to take each day as it comes”

Before the ABI, John was living in a relationship and worked full time. John said that in addition to work, he spent most of his time on his interests and in social activities with his friends outside his home. John described that early after the injury he was trying to live as before, trying to uphold previous interests and daily routines. For example, he gathered with his friends at the same places and strived to engage in the same activities. John said that, at that time, he did not understand that the consequences could be so extensive, i.e. all the sensory processing made him so tired. Subsequently, he came to realize that his everyday life had taken a completely different turn and required radical decisions regarding his everyday activities. Like in Sara’s case, previously “hidden” activities, now demanded full attention and had become “main” activities cf. [34]. However, in contrast to Sara, John had lost most of the activities that was previously meaningful to him and now his everyday life composed of only a few main activities with little or no flexibility.

His altered condition made it difficult to uphold any previous routines. John said that he now spent most of his time alone in his apartment; he only visited a few places, and his everyday activities had been reduced to a minimum; he only performed tasks that needed to be performed, such as maintaining the household. “There is not much that I can do actually. Nowadays I live alone and I can decide when to do things such as going grocery shopping. It is difficult to plan and I have to realize that I cannot find a structure for each day. Earlier, everything just went by automatically”. Based on our interpretation, John had, in a way, given up hope of finding new habits that could enable him to structure his day and create routines that enabled engagement in a variety of everyday activities. He was, more or less, reconciled to his situation and took one day at a time. From our encounters with John, we understood that when he engaged in everyday activities, his routine manner of performing them were very fixed and organized, and there was little or no room for flexibility. Because there was no variation in his social context (in contrast to Sara’s situation), he initiated every activity himself and could thereby remain in control when performing the activities, which will be further elaborated below.

“I´m trying to shut the world out”

A recurring situation that John found problematic was grocery shopping. When John talked about grocery shopping, it was clear that the meaning connected to this everyday activity had changed. John said, “Before the injury, I experienced grocery shopping as an enjoyable and social activity. I could go shopping after work, in different stores and do several errands at the same time. Today, I must plan and prepare for the shopping in a completely different way and can´t just go out shopping spontaneously. I must create a shopping list and walk to the same store nearby my apartment every time”. This situation described by John illustrates how his previous routines were flexible concerning places visited where social interactions could occur and how this routine had changed as illustrated below.

During one of the encounters with John when grocery shopping was scheduled, the first author met him at his apartment. He said that he had decided to use self-scanning in the grocery store for the first time in an attempt to minimize contacts with others. Before leaving the apartment John picked up his mobile phone, selected music and plugged in the earphones. During the walk to the store and when selecting and gathering the groceries, John was heading towards the goal, trying not to take notice of what was going on around him. He did not make any effort to make eye contact or engage in any other social interaction. He paid for the groceries using the self-scan system and packed them into a bag. Back at his apartment, when reflecting together on the situation, John said: “This time I managed the shopping rather well even though I used self-scanning for the first time. I think it was because I could remain focused. Another thing was that I was not interrupted and didn´t have to talk to anyone”. During the conversation afterwards, the researcher also asked him about using the earphones and listening to music during the whole activity, John explained, “That it is something that I have to do, it allows me to engage in activities such as grocery shopping or taking a walk. When I go out for a walk or go to the store, I plug in the earphones that block out all sounds and they must be tight and the music needs to be high enough to disturb all other sounds, then it works. I can be in my own little world”. Shutting the world out was a strategy that John had developed to avoid unexpected events and distracting stimulation other than the music he chose. Based on our interpretation, he had accepted his changed level of engagement because it enabled him to minimize distractions and thereby have a sense of control and master the situation. Previous research has also shown the importance of being able to preserve some sense of self after stroke by striving to narrow gaps in desired everyday activities and create strategies [38].

However, although shutting the world out enabled John to engage in some everyday activities outside the home, it had enormous consequences for his engagement in everyday activities in general. Based on John’s narrative, we understood that now he engaged in very few activities outside the home, in contrast to his previous engagement in a variety of meaningful activities. When talking to John he said, “It is not the same now, it is different and I don’t feel that I’m participating as other people are”. This account indicates that he experienced participation restrictions because of a reduced engagement in everyday activities outside the home. Participation is described as the overall goal of rehabilitation [1,2] and involves access to and engagement in a variety of places with a variety of people. It is therefore of importance to consider how engagement in everyday activities for persons with ABI actually supports participation, such as the possibility of being engaged in different places.

General discussion and conclusions

This study emphasizes the importance of considering how problematic situations can occur as a result of a complex interplay of persons and places. In this study, the characteristics of places i.e. environmental distractions causing challenging situations were essential for the participants’ possibilities to be engaged outside the home. Places for everyday activities were not merely a physical location but rather composed of physical and sociocultural aspects that created opportunities for engagement or failing to do so. Similar, the meaning of place in relation to engagement in everyday activities has also been found among older adults [39]. In the present study, places for everyday activities could no longer be taken for granted, and the engagement of the participants in everyday activities were now more restricted to the home environment. It was no longer possible for either Sara or John to be engaged in social events and situations and as a result, their social world had shrunk. The narratives of Sara and John provide examples and a deeper understanding of how participation can become restricted after ABI because of reduced engagement in activities outside home. In line with this, research has shown that participation restrictions are a common consequence after ABI [6,7] and that engagement in activities outside the home is challenging [11–14].

This study adds to the current understanding of how people with ABI struggle to engage in everyday activities outside the home. Findings illustrate how problematic situations occurred due to unexpected events that could not be predicted or planned for. The participants’ stories reflected how they now were more sensitive to distracting environments that interrupted and disturbed the on-going activity. As a result, activities outside the home became challenging and consumed a lot of energy. In line with this, research has shown that being interrupted in everyday activities by unexpected events not only influences the experience of the activity but is also a risk for ill health [34]. Therefore, it is important that occupational therapists identify recurrent unexpected events experienced as hassles and support clients to develop strategies that support participation.

Findings in this study highlight the importance of targeting everyday activities as an arena for enabling change and supporting persons with ABI during their process of adaptation. Observing everyday activities provides a rich picture of how problematic situations occur and the on-going challenges persons face and strategies they use in the actual context of engagement. This knowledge is essential for providing a deeper understanding of situations that challenge each individual and how these situations are managed in different ways with various consequences. Findings illustrate difficulties to create strategies that are flexible and can be used in different situations to support engagement. Consequently, engagement in activities outside the home becomes restricted in terms of fewer activities and less variety of meaningful activities outside home. In light of this, it is important to support persons with ABI to create more flexible routines and strategies. Not only in relation to specific tasks and activities, but also strategies they can use in different combinations in various situations to enable a variety of meaningful activities that support balance in everyday life. Previous research [40] has shown that persons with ABI need to practice how to transfer certain strategies to new and different situations and be prepared to use new strategies when necessary. Therefore, in agreement with previous research [38,40–43] we emphasize the importance of tailoring the support to the persons needs to enhance engagement in activities outside the home.

Furthermore, research has demonstrated the importance of providing long-term rehabilitation to resume previously valued activities that support adaptation to a changed way of life [44]. In addition, findings from our study highlight the need of professionals to support persons with ABI to develop self-management strategies to respond to on-going challenges. Taken together, these findings highlight the importance of rehabilitation not only initially after the injury but also in a later phase to support participation when trying to regain important roles and activities. The importance of rehabilitation post discharge has also been stressed in research among persons with stroke [45] pointing out the importance of support from both professionals and close others in developing self- management strategies. In light of this, it is important that occupational therapist support clients to develop activity based self-management strategies that support a better balance between main and hidden activities and prepare them to handle recurring unexpected events. As suggested by Erlandsson [34] this can improve a more sustainable healthy pattern of occupations.

Finally, there is a need to further investigate the complex interplay among person and contexts when engaging in everyday activities outside the home in a larger sample to generate knowledge of how place, everyday activities and social engagement are related and can contribute to meaningful experiences in the lives of people with ABI. This knowledge is relevant given that little is known about the kinds of places outside the home that are frequented by persons with ABI. Furthermore, it will help to elucidate whether engagement in everyday activities and places change after the onset of the injury and why. We also need to better understand the types of places that people with ABI wish to frequent.

Methodological considerations

In this study, trustworthiness of the results relates to how we approached and interpreted the experiences and actions of the participants from a narrative perspective, in both stories told and performed. Thus, we gained access to retold stories of the past as well as real-time actions and reflections on future engagement in activities. Interpretations were based on empirical data and theoretical resources.

Following the line of reasoning that narratives are socially constructed [22], the data and presented results must be viewed as co-constructed by the participant and the researchers [21]. Consequently, the results present one of many possible interpretations, which is consistent with narrative research [21,22]. Because the storied outcome is the authors` construction, it was not appropriate to ask the participants to verify it, in accordance with narrative analysis [21]. Therefore, results must be considered in light of this. Furthermore, trustworthiness was established by on-going discussions among all researchers during all phases of the interpretation process. The authors took on different roles in order to stay close to data and to avoid bias in the interpretations. Additionally, by outlining the theoretical resources and providing rich descriptions of the situations, readers can judge the plausibility of the offered interpretations [46]. Further research is needed, including participants with different living conditions and roles after ABI, to develop a broader understanding of on-going processes involved in everyday activities when problematic situations arise. Concerning design of future research, a narrative approach was found to be fruitful for capturing on-going processes and reflections as well as retold stories related to the occurrence and management of problematic situations.

Acknowledgements

The authors thank the participants for sharing their stories and inviting us to take part in their everyday activities.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.