http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(14): 1234–1241 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.961653

RESEARCH PAPER

Life goals and social identity in people with severe acquired brain injury: an interpretative phenomenological analysis Rachelle Martin1, William M. M. Levack1, and K. Anne Sinnott2,3 1

Rehabilitation Teaching and Research Unit, Department of Medicine, University of Otago, Wellington, New Zealand, 2Department of Orthopaedic Surgery & Musculoskeletal Medicine, University of Otago, Christchurch, New Zealand, and 3Burwood Academy of Independent Living, Burwood Hospital, Christchurch, New Zealand Abstract

Keywords

Purpose: While there is a growing body of literature exploring life goals in rehabilitation, little research has been undertaken that includes the voice of the end-user. This study examined the views and experiences of people with severe acquired brain injury regarding the place of ‘‘life goals’’ in residential rehabilitation. Methods: Interpretative phenomenological analysis was used to collect and analyze data from five semi-structured interviews with participants in a residential rehabilitation setting. Results: Three inter-related themes emerged from this study. Social connectedness (being ‘part of things’) emerged as a life goal of central importance for all participants (Theme 1). However, in order to achieve this sense of belonging, the participants needed to tentatively balance the opportunities arising within their environmental milieu (Theme 2) with the interpersonal factors relating to their unchanged, changed and changing self-identity (Theme 3). Conclusions: This study suggests that social identity and social connectedness ought to be primary foci of rehabilitation rather than matters only of secondary concern. Consideration needs to be given to both the environmental contexts and the intrapersonal strategies that support people who require residential rehabilitation services to achieve social connection, and thus their life goals, following a severe acquired brain injury.

Acquired brain injury, goal setting, life goals, rehabilitation, social identity History Received 9 March 2014 Revised 26 August 2014 Accepted 1 September 2014 Published online 24 September 2014

ä Implications for Rehabilitation 

  

There is a need to better support people with severe acquired brain injury (ABI) in terms of their social relationships and social identity during the delivery of person-centered rehabilitation services. Within the clinical setting there should be regular, in depth and open dialogue in which the individuals’ values and preferences are discovered. A focus on the coherence between daily activities and the person’s life goals is required for people with severe ABI. Clinicians need to consider how life goals for individual people change or are re-prioritized over the life span.

Introduction Acquired brain injury (ABI) is one of the most common causes of disability and death in adults [1,2]. ABI frequently results in a sudden, fundamental interruption to a former way of life, leading to a period of life transition [3,4]. ABI is known to disrupt life plans, threaten self-identity, and lead to a changed self-concept [4–7]. This in turn can impact on a person’s quality of life (QoL) and subjective wellbeing [3,8]. Furthermore, impairments of body structure and function resulting from ABI do not fully explain problems with subjective wellbeing or QoL [3]. The impact of an ABI is influenced by, and mediated through, personal and

Address for correspondence: Rachelle Martin, Rehabilitation Teaching and Research Unit, Department of Medicine, University of Otago, Wellington, New Zealand. Tel: +64 3 3417974 (Home); +64 21 223 3362 (Cell). E-mail: [email protected]

environmental factors, and there is an increasing recognition of the complex interplay between biological, psychological and social factors contributing to the consequences of ABI in a person’s life. Therefore, a biopsychosocial approach to rehabilitation services is commonly advocated [9,10]. Life goals have been described as ‘‘the desired states that people seek to obtain, maintain or avoid’’ [11] (p. 193). Life goals are commonly thought to be derived from core aspects of selfidentity and are determined by high-level abstract motivations. Indeed, consideration of life goals is deemed important in rehabilitation service delivery because of their influence over client motivation and wellbeing. For this reason, Sivaraman Nair [11] has argued that there should always be an explicit link between rehabilitation treatment goals and a client’s idealized self-image (representative of a person’s highest-order life goal). Research on life goals in rehabilitation to date has tended to focus on the relative importance attributed to different life goal

Life goals and social identity

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categories [11–13], and on exploring life goal attainability, particularly with respect to the promotion of subjective wellbeing [3,8,14]. The subjective wellbeing of people with ABI depends not only on the reported importance of life goals, but also on their perceived and actual attainability [3,8,14]. The best predictors of subjective well-being for people with ABI appear to be their perceptions of the attainability and their success with attainment of ‘‘communal life goals’’ [8] (p. 680). That is, specifically those related to meaningful social relationships and connections (particularly with regard to intimate relationships [14]) and to altruistic behavior. A key aim of this past research has been to explore whether or not changes in life goals prioritization or attainment, might suggest new ways to assist people with ABI regain or maintain a positive sense of subjective wellbeing [3,8,14]. While there is a growing body of literature around life goal importance, attainability and achievement, there is still limited evidence as to the benefits of integrating life goal planning into clinical rehabilitation for people with neurological disabilities. This is especially evident in the ABI population where complex impairments, including cognitive changes, impact on individuals’ abilities to effectively set, evaluate and achieve goals. Adaptation to ABI is also a notoriously long process [15–17], and yet research regarding life goals has tended to focus just on the first 1–2 years of rehabilitation [3,8,14]. It remains unclear whether life goal categories and attributes are changed following an ABI, and what impact change in physical or cognitive functioning may have on life goal attainment or perception of life goal priorities. It is also notable, given the importance of person-centered rehabilitation programes [18,19], that one missing perspective within the life goal literature has been that of the person who experiences disability – the end user. The voices and perspectives of end users add depth to knowledge within any body of literature, challenging our assumptions about what is most important or meaningful, and what research questions need to be asked next. The objective of this study, therefore, was to explore the lived experience and perceptions of life goals from the perspective of one particular group of people – those with severe acquired brain injury, living in a long-term residential rehabilitation setting.

Methods Research design This qualitative study employed interpretative phenomenological analysis [20] to explore the lived experiences of people with severe ABI residing in one residential care setting (the particular, or idiographic), regarding life goal planning in rehabilitation (the experience, or phenomenon of interest). We sought to understand their experiences through the analysis and interpretation of transcript data collected during semi-structured interviews. The Upper South Regional Ethics Committee of New Zealand’s Health and Disability Ethics Committees deemed this study to be of sufficiently low risk as to not require ethics committee review. Participant recruitment To be included in this investigation, participants needed to be aged 18–65 years, have had an ABI (e.g. traumatic brain injury, stroke or subarachnoid hemorrhage) that they acquired in adulthood (i.e. after 18 years of age), be at least one year postinjury, be living in a residential care facility, and be still involved in active goal-directed rehabilitation. All participants were also required to have a basic level of understanding of their situation – specifically, they needed to know that they were in a rehabilitation service for an injury or illness they had suffered. They also needed to have sufficient cognitive and communicative ability so as to

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understand what was being requested of them when they were being asked to participate in the study (as determined by the resident facility’s clinical staff), and so that they could provide written consent, with appropriate support from their next-of-kin as needed. Other than that, third-party evaluations of potential participants’ level of insight, cognitive function, or communicative abilities were not used to exclude people from the study. Indeed, it was the intent of this investigation to actively recruit people with cognitive impairments in order to explore with them how they articulated and strove toward achieving their life goals (if at all). Data collection Participants were interviewed in their private rooms within the residential setting by one investigator (RM). A semi-structured schedule (Table 1) was developed, although interviews were open-ended and questions were not phrased identically or asked in the same sequence for each participant, thereby allowing the participants to focus on what they deemed most important. The interviews were approximately of 60 min duration. All interviews were digitally recorded and transcribed verbatim. NVivo10 (QSR International, Melbourne, Australia) was used to assist with managing and analyzing the data. Data analysis Data interpretation followed recommended strategies for interpretative phenomenological analysis [20]. Initial analysis of the data was conducted by the lead investigator (RM) and focused on the meanings in the data (inductive components), starting with analysis of the themes emerging within a single case (ideographic components) before moving to analysis of subsequent interviews. The relationships between and within the themes emerging from the interviews were explored with increasingly higher levels of conceptualization. This involved an iterative and cyclical approach to analysis reflective of the hermeneutic circle, with first-order descriptive analysis conveying an empathic understanding of the participants’ experiences, and second-order conceptual analysis based on deeper interpretative work. Transcripts and theme documentation were peer-reviewed and discussed with two academic supervisors (WL and KAS) thus enhancing the scientific rigour of the work. Finally, the themes and their meanings were examined alongside findings from existing research so as to question and support our interpretation (interrogative component). The results from this analysis are reported below with extracts from the participants’ interviews to illustrate the key findings. Pseudonyms are used. Minor editing of extracts has been made for clarity, with all amendments shown in square brackets and omissions in the text shown by ellipses. Table 1. Lead questions used during interviews. Questions      

Tell me about what has happened since your injury/event? What kind of life do you want to live? What kind of person do you want to be? Who do you imagine yourself being? What do you think your life would be like if. . .? Are you able to tell me what you think your family and friends think is the most important thing to you?  To what degree have [life goals] featured in your rehabilitation?  How has rehabilitation contributed to your ability to achieve your [life goals]?  Tell me more about whether it could be helpful, or not, to use your stated life goals to set rehabilitation goals around specific activities and/or tasks you want to improve at?

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Results

In here I want to rehabilitate myself to the extent I can go home, and be in a home by myself, and have my son . . . and do the right thing by my boy. [Sarah]

Participants Five people were recruited from one residential rehabilitation facility. Table 2 summarizes the participants’ key characteristics. Three of the participants had ongoing physical impairments. All of the participants had significant cognitive impairments involving difficulties with memory, abstract reasoning, problem solving and awareness. These impairments were significant contributing reasons for people being unable to live by themselves, or with family, in the community. Overview of analysis Three primary interrelated themes emerged from the data: (1) Being ‘‘part of things’’; (2) Unchanged, changed and changing self and (3) Opportunities arising (Table 3). The first of these themes (Being ‘‘part of things’’) emerged as the central issue around which the other two key themes were balanced, thus this is where presentation of the results begins. Theme 1: Being ‘‘part of things’’ All participants described a desire to be actively integrated, connected and encountering within their social relationships. They experienced this as being the most important aspect of their lives. Participants made sense of themselves in terms of their experience in social and activity contexts – whether they were feeling ‘‘part of things’’ or not. Within this theme there was a strong subtheme of being able to contribute to relationships, through the enacting of roles, rather than just being in receipt of care and support. All the participants described the importance of intimate connectedness through family relationships. Social support within families, and relationships between family members, were valued highly in relation to the participants’ experiences of life goal achievement.

Participants described themselves as wanting to be available for their families. For Sarah this was seen most prominently in her desire to ‘‘be there’’ for her children. . .‘‘no matter what’’. Being able to perform the role of provider was also important for participants. John, in particular, described the importance of being able to provide for his family by purchasing food for family meals, and by offering them financial gifts. For Bridget, being able to cook a meal for her son was highly valued. Intimate connection provided a way for the person with the brain injury to contribute to the family system. They’re the only family I’ve got . . . so I’m going to look after them. They look after me. I look after them . . . and I accept nothing in return. Only friendship. [John] Relational connectedness through friendships was also an important life goal. Concepts that emerged from the interviews included spontaneity in friendships, the practical support offered by friends, and the importance of friendships in helping participants develop a sense of belonging. These relationships also contributed to the participants’ perception of meaning and purpose, and hence to their self-concept. A desire for personal relationships and social connection with people outside of the residential care setting was also a pressing concern. Simon, in particular, wished to reconnect with friends from his past – especially those that he knew prior to his brain injury. [I’d like to see] some more friends outside of the [facility]. I try and catch up with some of my old friends I haven’t seen for many years . . . A lot of them have gone now. [Simon]

Table 2. Participant characteristics.

Pseudonym Sarah Simon John Megan Bridget

Gender

Age

Diagnosis

Time since injury

Time in facility

Barthel Index Score

F M M F F

51 51 62 56 51

Stroke – right basal ganglia Traumatic brain injury Traumatic brain injury Stroke – intracranial hemorrhage Stroke – subarachnoid hemorrhage

1.3 years 29 years 36 years 8 years 7 years

1 year 2 years 33 years 7 years 5 years

11/20 20/20 1/20 11/20 20/20

Table 3. Summary of emerging themes. Theme

Subordinate themes

‘‘Being part of things’’: actively integrated, connected and encountering

The ‘‘most important thing’’

‘‘Unchanged, changed and changing’’: self in the context of life goals following an ABI

Unchanged Changed Changing

‘‘Opportunities arising’’: The influence of environmental context of life goal achievement

Attention to life goals Connections with social networks The value of meaningful occupation and participation Systems and processes

Intimate connectedness through family relationships Relational connectedness through friendships Collective connectedness through citizenship Rapid change (‘‘bang’’) Gradual change (‘‘can’t get back to my old ways of living’’) Ongoing process New scripts reflecting an evolving self Evolving strategies used towards goal achievement Retaining/rebuilding hope but also facing reality Risk management Role of staff as facilitators or gatekeepers

DOI: 10.3109/09638288.2014.961653

Regular, spontaneous contact that occurred between participants and friends was valued by a number of participants and was reflected on by Bridget who felt that she had achieved this with her friends. Just ringing them in the odd day, and [my friend] comes in quite a bit and sees us. [Bridget] Friends also appeared to provide participants with a means to instrumental support and assistance, and these friendships allowed participants to feel part of a social group. Friends provided a role in brokering social connection with others so that the participants felt included and integrated. Simon felt that friends also allowed him to be ‘‘social and busy’’ and this helped provide structure to his days and weeks. A further emerging subtheme related to collective connectedness through citizenship. In this sense, the participants saw themselves as people who were contributing to something larger than himself or herself, or to another person. This was in contrast to only receiving support. By helping others, the participants were also helping themselves and gaining from the experience. It’s very important to me to be able to help people . . . it’s obviously good for them that I’m helping them, but maybe this is selfish, it’s very, very important for me that I’m helping them. [Megan] The two subsequent themes in this paper explore factors that needed to be constantly and tentatively balanced in order to achieve this goal of social connectedness. These two themes include concepts pertaining to the participants’ past, present, and future self-identity and to the barriers and facilitators to social engagement within the participants’ milieu. The following quote from Megan illustrates the links between these three main themes that emerged from the study data: So in terms of getting back to my old ways of living, as such, that hasn’t really happened at all. . . . I suppose it hasn’t happened that way because the opportunity just hasn’t arisen. I haven’t made the opportunity for myself. I’ve just sort of stagnated, in some respects. Trying to cope with my new physical state, and my living away from my family, and away from doing everything family-oriented, I found myself quite isolated. And because of that, I haven’t had the opportunity to pursue those types of things. [Megan]

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However, the participants also recognized that, in other ways, they had changed considerably in themselves. This was often reflected in the sudden change they had experienced in terms of their dependency on others for assistance with daily living. Megan described herself as being ‘‘terribly different’’ as a person, particularly in regard to not being able to use the left side of her body and the impact that this had on her independence with physical tasks. It’s left me with a feeling of what I’d say is almost utter defeat, given that I am so incapacitated. And I’m not an independent person anymore . . . I find that very frustrating, because I was a very independent person previously. I mean I had very lovely relationships with people that would help me with certain things, but it wasn’t an absolute need to be helped as it now is, unfortunately. [Megan] Megan also recognized that while she saw herself as unchanged in many ways, her ability to achieve her life goals had altered. No, I’d say the [things that are important to me] are pretty much the same, but it’s my ability to be able to achieve them which has changed. [Megan] There was also the experience of gradual change over time (i.e. over many years) in which people slowly grew to perceive an inability to return to their life before ABI. There was an awareness that they would not be able to get back to their ‘‘old ways of living’’. The participants associated this with being dependent on others for completion of physical tasks, contributing to a loss of agency, a changed view of self, and an inability to utilize coping strategies from the past. Over time this had eventually led the participants to feeling as if they were stagnating, isolated, and were a burden on others: Like being in bed at night and I have this dream, and I wake up, and I think that my [children] are actually here, and I actually call out their names. And they’re not here. And that really is disturbing. [Sarah]

This theme related to the participants’ self-concept in the context of their life goals following an ABI. This theme incorporated the idea of a person having a complex presentation of being unchanged in terms of the life goals which remained important to them, while still having changed dramatically, and continuing to change, as an individual in both sudden and gradual ways over time since their ABI. The subtheme of being ‘‘unchanged’’ incorporated the participants’ experience of coherence in terms of values and in relation to their self-concept – their personality, personal strengths, insecurities and skills. For example, Bridget described herself as previously being an ‘‘outgoing’’ and ‘‘loud’’ person who just ‘‘just wanted to get up and do things, get things done’’. When asked how she would describe herself now, she responded:

Simon’s interview was also richly reflective of this notion of disconnection and isolation in relation to the absence of friendships outside of the residential context. There was a pronounced sense that life had moved on without him in that he described his friendships as having ‘‘dissolved’’. The subtheme ‘‘changing’’ was connected to an emerging understanding of self in the context of life goals following ABI and related to the on-going personal development that was experienced by the participants throughout their life span. This concept of evolving and growing is in contrast to a more static view of a person who has achieved their maximal physical recovery and whose progress has supposedly plateaued. The participants talked about being in a state of ongoing progress and recovery. For example, Bridget referred to her past inability to ‘‘walk, talk, or do anything’’ and contrasted this with the statement: ‘‘now I’m working for them’’. There was also the appreciation of the creation of new scripts reflecting an evolving view of self. These scripts appeared to be related to life goal choices for the participants. Sarah’s thoughts reflected the significance that she gave to the emergence of a new self-identity and her narrative around this identity:

I’m probably still a bit loud. I like going to see friends, that sort of thing. And going out. [Bridget]

Well before my stroke I . . . used to drink a lot. So I don’t want to do that anymore . . . I don’t want to have to rely on my drink

Theme 2: Unchanged, changed and changing self

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to get rid of my problems and my thoughts, and to be happy again. [Sarah] Other participants also appeared to appreciate the changes that they have seen in themselves over the years since their ABI. John referred to his development as a moral person. The evolving use or non-use of strategies towards goal achievement also emerged from the participant’s narratives. Some participants volunteered ideas for practical solutions to the problems or barriers they had experienced. For instance, Megan recognized her need for interdependence and factored this into a possible solution to her wish to help others. Well perhaps . . . if I could find a charity that needed my types of help and skills. If I could be assisted in going to it, in other words, if I could offer my help. But I would unfortunately of course need some help myself. So if there could be somebody sort of in the background, as it were, to come and be able to help me whilst I’m helping others. [Megan] However, not all participants were able to identify possible strategies to progress towards their life goals. Simon, for instance, was unable to come up with ways of widening his social network and described being almost completely dependent on his coach to provide the content and structure for his day. When asked what he would include in his ideal day, Simon replied a number of times that it ‘‘depends on what [the coach] has got planned for me’’. Finally, retaining and rebuilding hope, while still facing reality also emerged from analysis of the subtheme of the changing self. John articulated this theme most strongly as an on-going desire to walk again despite having been a wheelchair user for some decades. He simultaneously held hopes for probably unachievable outcomes along with hopes for more generalized, but potentially more achievable, states of being. I’d like to get out of this chair and run down the hallway. And things like that you know what I mean?. . . that’s impossible to – that’s an impossible task. You know. [John] Ambiguity between current reality and future hope seemed to be linked to changing expectations by participants. There appeared to be a shift from a more concrete hope for recovery, to a more generalized hope for the future, as participants adapted to living with an ABI over the longer term. Theme 3: Opportunities arising This final theme related to the influence of the participant’s milieu on life goal achievement. There was some ambiguity around whether or not participants felt that attention had been given to life goals in the residential rehabilitation setting. Both Simon and John expressed the opinion that the interview for this study was the first time that life goals had been discussed with them. Megan also described feeling as if there had been a focus on physical rehabilitation during her recovery, and that life goals had not featured in her rehabilitation to date. However, all of the participants described the value of discussing life goals with staff. For some there was a belief that it was a necessary and vital part of achieving a good understanding between the staff and client. John expressed a sense of importance attributed to staff knowing him as a whole person, to ‘‘express my feelings about different subjects, and different tasks’’. Nevertheless the participants also demonstrated some reluctance to share their life goals with the residential staff, partly because of a desire to not burden staff.

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I don’t like to prattle on, you know. People are helping me on my day-to-day necessities, and I don’t therefore want to burden them with ‘oh, but I really want to be doing this.’ . . . I should be grateful for, and encourage the help in the ways that I do get it, because of course it is invaluable to me to get that help. And I don’t want to diminish that in any way. [Megan] Another reason for some reluctance to share life goals related to the perception that staff would not place the same high value on the goals that clients held. A further subtheme related to the participants’ ability to initiate and sustain meaningful interactions and connections with their social networks and the wider community. The participants frequently described feeling isolated from their social networks. This included experiencing a physical and emotional distance resulting from ‘‘not living at home’’ and not having their family members (particularly, for some, their children) in their life on a daily basis. Participants also described difficulties in finding, and remaining connected, with new friends with Simon stating, [I] just can’t find anyone to invite back [to visit]. Opportunities for meaningful occupation and participation were highly valued by the participants, who spoke of when they had developed and consolidated new, adaptive and personally salient meanings through occupational roles. The meaning and doing within occupational roles undertaken by the participants was closely linked. Both the importance of the specific task and the social interactions within the task environment contributed to the achievement of life goals. Simon described the enjoyment and social connectedness he experienced when previously working as a volunteer. John experienced a sense of accomplishment and pride in his weekly woodworking activity and referred to the enjoyment he received from creating leather products for sale. His interview illustrated how his sense of self after ABI had emerging from the activities he was engaged in. For Bridget, the value of occupation was most clearly viewed through the lens of her vocational role. Her part-time employment allowed her to experience ‘‘the independence of working’’ and facilitated her connections with people. The people I work for . . . and the customers . . . I can chat away. Yeah, no, it’s good. Really good . . . Being friendly. That sort of thing. [Bridget] Systems and processes within the residential facility acted as both facilitators and barriers for the participants. This subtheme is made up of two interconnecting concepts: (1) risk management systems versus choice and control, and (2) the role of staff as facilitators and/or gatekeepers. Risk management systems and processes within the organization were closely associated with the participants’ opportunities to attain and maintain autonomy, choice and control. Cognitive impairments, particularly around memory, orientation and initiation, were significant factors impacting on daily function. Extensive risk management planning had been put in place to identify and manage risk effectively for all participants. This was not surprising for this group, given that the need for 24hour supervision was often the primary reason for the participants’ living in a residential facility. Nevertheless the participants described a lack of opportunities, or barriers, to enact decisional autonomy. For Megan, her inability to make a decision to purchase an item of clothing without seeking staff permission or support was a significant restriction on her ‘‘freedom of independence’’. Well I think to be able to make independent choices about how I want to spend my day, for instance, and where I want to go, and to be able to just do it, without having to beg and plead. [Megan]

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Megan had an awareness of safety issues and articulated an understanding of the need for risk-management processes. Nevertheless, this lack of ability to make spontaneous decisions contributed to a loss of choice and control over her daily activities. It therefore seemed that within the main facility, and for people with more severe cognitive impairments, decisional autonomy was difficult to achieve, even though this independence of choice remained an importantly held value for the participants. The role of staff as facilitators or gatekeepers in supporting the participants was also closely aligned to the concepts of choice and control. Staff members within the facility were perceived as contributing to, and limiting, pursuit of life goal. A number of participants were fully reliant on others to assist them in initiating and sustaining connections with social networks and the wider community. For example, Simon appeared to be very dependent on staff to initiate and facilitate daily activities and tasks, and to determine the content of his day. In particular, Simon appeared to view his coach as being a gatekeeper who limited and controlled his options. [My coach] is the one thing [that stops me going out with people]. I can’t always find him. [I need him to be able to] use one of my taxi vouchers. [Simon] The participants described the importance of external validation from staff, including the need for recognition of mastery over small goals when describing their successes. The support and encouragement for small gains communicated faith in them as a whole person. They talked about the need to share their ideas with staff, and the importance they placed on telling staff their goals. The support of staff and friends was important for giving them a sense of motivation and for providing strategies to continue a high level of engagement and participation in daily activities.

Discussion The importance of ‘‘being part of things’’ The participants in this study described life goals as primarily relating to social connectedness. This is consistent with previous research around life goals that has demonstrated the high importance attributed to relationships by people with neurological impairments [8,12–14,21]. It has been suggested that people need strong, reciprocal relationships with people close to them, with whom they can share feelings, problems, ideas and aspirations [22]. Within the current study, the participants appeared to view rehabilitation as having primarily targeted instrumental activities (such as self-care tasks) and they expressed a desire for greater levels of affective support. Being able to contribute to the lives of others, and not just being in receipt of care, was a further aspect of reciprocity discussed by the participants in this study. They wanted to be a friend and not just have a friend. Self-identity and social identity Self-identity has recently become a focus in ABI literature [5,23– 27]. Self-identity influences choices of goals in life, and helps people make sense of the lives they lead [28]. The theme ‘‘Unchanged, changed, and changing self’’ supports the notion that changes in physical, cognitive, emotional and social functioning can have a profound impact on a person’s selfconcept and their ability to reconstruct a sense of self after brain injury [5,28–30]. Identity construction thus becomes central to rehabilitation [31]. However, within rehabilitation literature there is also an increasing understanding of the importance of social identity [9,25,32,33]. Social identity theory [34] suggests that participation in social contexts is the means by which we realize

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our identities [35]. Therefore, it is important to not just consider the conceptualized self in isolation. There is also a need to consider how social identity contributes to an overall sense of self and wellbeing. Impact of lack of social connectedness Previous research has underscored the way in which we are deeply affected by the social relationships we form with others, and how ‘‘social isolation can have devastating consequences with profound negative effects on resilience, health and wellbeing’’ [36] (p. 20). Indeed, measures of social engagement appear to be significant and reliable indicators of psychological functioning, community integration, family functioning, life satisfaction and quality of life [28].Importantly, social relationships have been found to make an independent contribution to health outcomes even after controlling for variables that are typically associated with adverse health [36,37]. In the general population, the magnitude of the effect of social relationships on mortality is comparable to quitting smoking, and exceeds that of strategies to address obesity, high blood pressure and physical inactivity [38]. Within the TBI literature, Douglas and Spellacy [22] found that a poverty of social relationships, particularly for relationships that contribute strong emotional support, was a significant and reliable indicator of depression in adults with TBI. While there has been limited work to date exploring the effectiveness of interventions specifically targeting the development of social connectedness in people following TBI, Douglas et al. [39] found that becoming socially connected and involved in group-based community activities made a difference to the emotional wellbeing of a group of TBI participants. A recent systematic review of the literature exploring the relationship between social support and stroke survivors health-related QoL concluded that social support should be a substantial focus in acute and chronic rehabilitation programs with an emphasis on the quality of interactions over the frequency of contacts [40]. The experiences of the participants in this study suggest that rehabilitation services should therefore consider broadening their focus from functional status rehabilitation to include social identity considerations. The development and validation of theoretical frameworks and clinical tools aimed at encouraging and prompting social relationships after ABI are also required. Intra-personal factors The on-going impact of impairments also had an influence on the identification and actualisztion of life goals for the participants in this study. Life goal literature has referenced the impact of memory and cognition on life goal identification and achievement [11,12,41]. However, the participants in this study were able to express their life goals even if they had difficulty articulating the objectives of their daily activities. Who they were as a person was coherently expressed, despite an inability to necessarily articulate a short-term goal or activity that was meaningful to them at that present moment. Autobiographical memory is believed to include semantic and episodic components, both of which support identity formation. Rathbone et al. [42] have demonstrated that it is possible for individuals with severe episodic memory loss to maintain a sense of self-based solely on semantic memory, although the experience of this sense of self may be qualitatively different. The participants’ experiences in this study supported the notion that, even for those with severe memory impairments, life is purposeful and life goals can be articulated and discussed. Participants were able to talk about their desire for activities that could be linked to higher order meanings and identity, even if these were not clearly articulated in reference to specific shortterm goals.

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Clinical implications and recommendations The enactment of person-centered care requires in depth and open discussions about life goals. There should be a dialogue in which the individual’s values and preferences are discovered [43–45]. This could include how specific rehabilitation activities reinforce who they are and how it helps them feel ‘‘part of things’’. However, clinicians should be aware that participation does not automatically lead to an increased sense of belonging. Physical integration does not necessarily mean social integration. A sense of belonging is a perception that is unique to the individual centered on feelings of value, respect and fit [46]. Ideally activities should be referenced to a person’s own preference and be shaped by their life goals and higher representations of self, rather than allowing professional aims to dominate over the aspirations of the person with ABI [47,48]. This may result in a prioritization and promotion of client understandings and experiences [48–50] over professional assessment and objective understandings. The enactment of person-centered care also requires a focus on the coherence between daily activities and the person’s life goals. Coherence in relation to the hierarchical link between lower level treatment goals and high-level objectives should be made explicit, and alternative strategies and routes to achievement of higherlevel goals should be planned for in the face of functional limitations [13]. Strategies, and technological interventions, that support the integration of experiences into personal and social identity and higher representations of self are also required [3,41]. One systematic process that may be useful in assisting with life goal achievement in this population is Metaphoric Identity Mapping [51], which is used to help individuals to set personal goals that are consistent with a sense of identity that they value. Finally, the enactment of person-centered care will require considering how life goals for individual people change or are reprioritized over time. There is an increasing call for ABI to be reframed as a chronic health condition or as a disease process rather than a one-off event [16,17]. Rehabilitation services should therefore consider the longer term needs of the person with ABI rather than focusing solely on the restoration of function immediately after the injuring event. Study limitations Due to the commitment to an ideographic approach in this study, these study findings are not generalizable, in the statistical sense, to other populations. In particular, all the participants were residents from one residential care setting. Other residential settings may provide different opportunities, have different processes, and thus result in a very different experience for their clients. The generation and interpretation of data will have also, necessarily, been influenced by our sensitivity, as researchers, to theoretical concepts and ideas. However, we employed processes to enhance our self-reflectivity during this study (i.e. peer-review of data, group discussion and memoing) in order to enhance the trustworthiness of the analysis process and credibility of the final research report.

Conclusion Participants’ narratives in this study support a growing body of literature highlighting a need to focus on the social identity of the person with ABI, along with greater attention to their changing milieu. If we are to support people to achieve their life goals following a severe ABI, then we will need to continue to develop theoretical frameworks and interventions that better support people in terms of social relationships and social identity throughout their lives. There is also a need to be aware that the

Disabil Rehabil, 2015; 37(14): 1234–1241

person’s milieu is susceptible to change even after severe ABI and that people in residential care following ABI require increased environmental support and creative solutions to facilitate life goal attainment. Attention to life goals will allow future research and theory to be more representative of, and responsive to, the experiences of people who need to access services and support following an ABI.

Acknowledgements The authors would like to thank all the participants who gave their time for the study and the staff who supported this research. The authors also wish to thank Dr Fi Graham for her clinical supervisory support with this project.

Declaration of interest The authors report no declaration of interest.

References 1. Strong K, Mathers C, Bonita R. Preventing stroke: saving lives around the world. Lancet Neurol 2007;6:182–7. 2. Langlois JA, Rutland-Brown W, Wald MM. The epidemiology and impact of traumatic brain injury: a brief overview. J Head Trauma Rehabil 2006;21:375–8. 3. Doering BK, Conrad N, Rief W, Exner C. Life goals after brain injury in the light of the dual process approach: empirical evidence and implications for neuropsychological rehabilitation. Neuropsychol Rehabil 2011;21:515–38. 4. Ellis-Hill CS, Payne S, Ward C. Self-body split: issues of identity in physical recovery following a stroke. Disabil Rehabil 2000;22: 725–33. 5. Levack WMM, Kayes NM, Fadyl JK. Experience of recovery and outcome following traumatic brain injury: a metasynthesis of qualitative research. Disabil Rehabil 2010;32:986–99. 6. Cantor JB, Ashman TA, Schwartz ME, et al. The role of selfdiscrepancy theory in understanding post-traumatic brain injury affective disorders: a pilot study. J Head Trauma Rehabil 2005;20:527–43. 7. Salter K, Hellings C, Foley N, Teasell R. The experience of living with stroke: a qualitative meta-synthesis. J Rehabil Med 2008;40: 595–602. 8. Kuenemund A, Zwick S, Doering BK, et al. Decline in attainability of communion and agency life goals over 2 years following acquired brain injury and the impact on subjective well-being. Neuropsychol Rehabil 2013;23:678–97. 9. Gracey F, Evans JJ, Malley D. Capturing process and outcome in complex rehabilitation interventions: a ‘‘Y-shaped’’ model. Neuropsychol Rehabil 2009;19:867–90. 10. Engel GL. The clinical application of the biopsychosocial model. Am J Psychiat 1980;137:535–44. 11. Sivaraman Nair KP. Life goals: the concept and its relevance to rehabilitation. Clin Rehabil 2003;17:192–202. 12. Sivaraman Nair KP, Wade DT. Life goals of people with disabilities due to neurological disorders. Clin Rehabil 2003;17:521–7. 13. McGrath JR, Adams L. Patient-centred goal planning: a systematic psychological therapy? Topics Stroke Rehabil 1999;6:43–50. 14. Conrad N, Doering BK, Rief W, Exner C. Looking beyond the importance of life goals. The personal goal model of subjective wellbeing in neuropsychological rehabilitation. Clin Rehabil 2010;24: 431–43. 15. Teasell R, Mehta S, Pereira S, et al. Time to rethink long-term rehabilitation management of stroke patients. Topics Stroke Rehabil 2012;19:457–62. 16. Masel BE, DeWitt DS. Traumatic brain injury: a disease process, not an event. J Neurotrauma 2010;27:1529–40. 17. Corrigan JD, Hammond FM. Traumatic brain injury as a chronic health condition. Arch Phys Med Rehabil 2013;94:1199–201. 18. Cott CA. Client-centred rehabilitation: client perspectives. Disabil Rehabil 2004;26:1411–22. 19. Rosewilliam S, Roskell CA, Pandyan AD. A systematic review and synthesis of the quantitative and qualitative evidence behind

Life goals and social identity

DOI: 10.3109/09638288.2014.961653

20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36.

patient-centred goal setting in stroke rehabilitation. Clin Rehabil 2011;25:501–14. Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London: Sage; 2009. Sivaraman Nair KP, Wade DT. Changes in life goals of people with neurological disabilities. Clin Rehabil 2003;17:797–803. Douglas JM, Spellacy FJ. Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Injury 2000;14: 71–88. Ylvisaker M, Feeney T. Reconstruction of identity after brain injury. Brain Impair 2000;1:12–28. Nochi M. ‘‘Loss of self’’ in the narratives of people with traumatic brain injuries: a qualitative analysis. Social Sci Med 1998;46:869–78. Gracey F, Palmer S, Rous B, et al. ‘‘Feeling part of things’’: personal construction of self after brain injury. Neuropsychol Rehabil 2008;18:627–50. Muenchberger H, Kendall E, Neal R. Identity transition following traumatic brain injury: a dynamic process of contraction, expansion and tentative balance. Brain Injury 2008;22:979–92. Pallesen H. Body, coping and self-identity. A qualitative 5-year follow-up study of stroke. Disabil Rehabil 2014;36:232–41. Douglas JM. Conceptualizing self and maintaining social connection following severe traumatic brain injury. Brain Injury 2013;27:60–74. Nochi M. Dealing with the ‘Void’: traumatic brain injury as a story. Disabil Society 1997;12:533–55. Ponsford J, Kelly A, Couchman G. Self-concept and self-esteem after acquired brain injury: a control group comparison. Brain Injury 2014;28:146–54. Klinger L. Occupational adaptation: perspectives of people with traumatic brain injury. J Occup Sci 2005;12:9–16. Jetten J, Haslam C, Haslam SA. The social cure: identity, health and well-being. East Sussex: Psychology Press; 2012. Uchino BN. Social support and health: a review of physiological processes potentially underlying links to disease outcomes. J Behav Med 2006;29:377–87. Tajfel H, Turner JC. An integrative theory of intergroup conflict. Soc Psychol Intergroup Rel 1979;33:47. Haslam C, Holme A, Haslam SA, et al. Maintaining group memberships: social identity continuity predicts well-being after stroke. Neuropsychol Rehabil 2008;18:671–91. Jetten J, Haslam C, Haslam SA. The case for a social identity analysis of health and well-being. In: Jetten J, Haslam C, Haslam

37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48.

49. 50. 51.

1241

SA, eds. The social cure: identity, health and well-being. East Sussex: Psychology Press; 2012:3–20. Jetten J, Haslam C, Haslam SA, et al. How groups affect our health and well-being: the path from theory to policy. Social Issues Policy Rev 2014;8:103–30. Holt-Lunstad J, Smith TB, Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS Med 2010;7:e1000316. Douglas JM, Dyson M, Foreman P. Increasing leisure activity following severe traumatic brain injury: does it make a difference? Brain Impair 2006;7:107–18. Kruithof WJ, van Mierlo ML, Visser-Meily J, et al. Associations between social support and stroke survivors’ health-related quality of life – a systematic review. Patient Educ Counsel 2013;93:169–76. Evans JJ. Positive psychology and brain injury rehabilitation. Brain Impair 2011;12:117–27. Rathbone CJ, Moulin CJ, Conway MA. Autobiographical memory and amnesia: using conceptual knowledge to ground the self. Neurocase 2009;15:405–18. Bright FA, Boland P, Rutherford SJ, et al. Implementing a clientcentred approach in rehabilitation: an autoethnography. Disabil Rehabil 2012;34:997–1004. Cardol M, DeJong BA, Ward CD. On autonomy and participation in rehabilitation. Disabil Rehabil 2002;24:970–4. Ward CD. Is patient-centred care a good thing? Clin Rehabil 2012; 26:3–9. Mahar AL, Cobigo V, Stuart H. Conceptualizing belonging. Disabil Rehabil 2013;35:1026–32. Cott CA, Wiles R, Devitt R. Continuity, transition and participation: preparing clients for life in the community post stroke. Disabil Rehabil 2007;29:1566–74. Levack WMM, Dean SG, Siegert RJ, McPherson KM. Navigating patient-centred goal setting in inpatient stroke rehabiitation: how clinicians control the process to meet perceived professional responsibilities. Patient Educ Counsel 2011;85:206–13. Barnard RA, Cruice MN, Playford ED. Strategies used in the pursuit of achievability during goal setting in rehabilitation. Qual Health Res 2010;20:239–50. Brown M, Levack W, McPherson KM, et al. Survival, momentum, and things that make me ‘‘me’’: patients’ perceptions of goal setting after stroke. Disabil Rehabil 2014;36:1020–6. Ylvisaker M, McPherson K, Kayes N, Pellett E. Metaphoric identity mapping: facilitating goal setting and engagement in rehabilitation after traumatic brain injury. Neuropsychol Rehabil 2008;18:713–41.