Who am I now? A scoping review on identity changes in post-stroke aphasia

Figures & data

Table 1. Strategy for searching PubMed.

Search string used in PubMed
(“Social Identification”[Mesh] OR “Social ident*”[tiab] OR “Personal Narratives as Topic”[Mesh] OR “Personal Narratives as Topic”[tiab] OR “Personal Narratives”[tiab] OR “Narration”[Mesh] OR “Narration”[tiab] OR “Biographies as Topic”[Mesh] OR “Biograph*”[tiab] OR “experiential knowledge”[tiab] OR “Life Change Events”[Mesh] OR “Life Change Events”[tiab]) AND (“Aphasia”[Mesh] OR “Aphasia”[tiab])
Keywords
Identity; personal narratives; experiential knowledge; life change events; aphasia

Figure 1. Number of publications included in each step of the review. Based on the PRISMA 2020 flow diagram [37].

Image of the selection process of publications included via scientific databases in a scoping review on identity changes in people with aphasia. Initially, 492 records were identified in the databases. Eventually, 20 reports were included in the review.

Figure 2. Step-by-step introduction of theory of the concept of identity in the reports.

Image of the sequence of discussion of theory in studies on identity changes of people with aphasia. It begins with how life changes after post-stroke aphasia and the relationship between identity formation and storytelling. Then is discussed how language disorders affect identity formation, ending with how people with aphasia integrate identity changes in their lives.

Figure 3. The “Narrative Identity Model.”

Image of the different dimensions of the “Narrative Identity Model” and how they interact. This model visualizes the personal dimensions (the bottom of the model) and the social dimensions (the top of the model). Narrative identity is symbolized by the head with interconnected gears in the middle of the model and becomes visible at the crossroads of the personal and social dimensions.

Figure 4. The sub-themes incorporated in the “Narrative Identity Model.”

Image of the “Narrative Identity Model” filled in with the various sub-themes emerging from a thematic analysis of the literature on identity changes of people with aphasia.

Table A1. Descriptive summary of the reports.

Author, year & country	Aim of the study	Design and methods	Study population (age, gender, months post onset)	Findings of the empirical papers
Shadden, B.B.; Agan, J.P., 2004, USA [41]	To discuss identity as it relates to aphasia and the resulting impact on life participation.	Theoretical paper	N/A	N/A
Shadden, B.B., 2005, USA [42]	To review concepts from the sociocultural literature that bear upon social identity and can be applied to an understanding of short- and long-term consequences of aphasia	Theoretical paper	N/A	N/A
Hinckley, J.J., 2006, USA [67]	The question “What does it take to live successfully with stroke and aphasia?” was posed and answers were sought within already published accounts written by people living with aphasia.	Narrative design Review of personal narratives of PWA	N = 20, gender not specified, age 20s to 50s, ≥ 24 m.p.o.	The review showed four prominent themes associated with successful living with aphasia: the significance of social support, adaptations in self-perception, forward-looking attitudes with the establishment of new goals, and the agency for continual improvement in communication.
Shadden, B B.; Hagstrom, F., 2007, USA [43]	To explore the relationship and integration of a narrative and the life participation approach to aphasia (LPAA).	Theoretical paper	N/A	N/A
Shadden, B.B.; Koski, P. R., 2007, USA [44]	To address the impact of aphasia on construction or storying on self, rather than identity perse.	Theoretical paper	N/A	N/A
Barrow, R., 2008, Ireland [68]	To explore and identify the role that narratives of disability (i.e., the “inner stories we live by”) play in how Anne, a woman with aphasia, and those close to her, make sense of stroke and aphasia.	Single case study Narrative and ethnographic design In-depth interviews, participant observation, and collection of relevant artefacts	N = 1, female, age 40, 24 m.p.o.	The study showed two constant narratives in society: the narrative of disability as limited competence and the restitution narrative focusing on treatment and recovery. The narrative of disability as limited competence causes PWA to feel less valued, because they have to deal with the prejudice of others (e.g., concerning their perceived intelligence and abilities). The restitution narrative might give PWA the notion that the disability is not desired.
Shadden, B.B.; Hagstrom, F.; Koski, P. R., 2008, USA [39]	To explore the fundamentally social nature of the self by examining four primary dimensions - the cultural aspect, roles, situational interactions, and biography. To discuss the concepts of agency and power, which underlie all self-creation.	Book published by academic publisher, Chapter 3	N/A	N/A
Shadden, B.B.; Hagstrom, F.; Koski, P.R., 2008, USA [40]	To introduce a broad spectrum of individuals -male and female, married and divorced, retired and working at the time of stroke - with a variety of occupations and interests. They serve as an illustration of our focus on how people with communication disorders create narrative selves.	Book published by academic publisher, Chapter 8	N/A	N/A
Simmons-Mackie, N.; Elman, R.J., 2010, USA [56]	To describe identity relevant interactions in a group aphasia therapy session and identify explanatory themes associated with positive identity negotiation in order to contribute to the process of unpacking identity negotiation as an interactive phenomenon in aphasia.	Discourse design Video-taped group therapy session	N = 7 men, N = 1 female, group leader, group assistant, age 40–70 years, > 6 m.p.o.	The study showed five key themes linked to fostering a positive identity through interaction: being heard, acknowledgment of competence, solidarity, visualization of group identity markers, and the promotion of positive personal identity. These findings suggest the potential for incorporating identity-enhancing interactions as an integral component of aphasia therapy.
Mitchell, K; Skirton, H.; Monrouxe, L., 2011, UK [71]	The aim of this study was to explore the narrative types and metaphors used by people with aphasia. The objectives were to: (1) investigate the different narrative types and plot lines used; (2) explore the links between their use of narrative types and metaphors; and (3) suggest possible implications of the findings for reconstructing self-identities.	Narrative design Open and semi-structured interviews	N = 7 men, N = 4 women, age 49–78 years, 2,5 up to 10 years p.o.	The study showed four distinctive narrative types: amelioration, discordant, regeneration, and acquiescent. Furthermore, thirteen metaphorical concepts across five domains were identified: life, brain, spirituality, progress, and aphasia.
Armstrong, E.; Hersh, D.; Hayward C.; Fraser, J.; Brown, M., 2012, Australia [72]	To find out how aphasia was constructed and dealt with in Aboriginal communities and try to understand more about how Aboriginal people adjusted to aphasia in the long-term.	Narrative design Semi-structured interviews	N = 3 male, age 47–63, 6 months up to 29 years p.o.	The study showed a lack of discussion of aphasia in the narratives of the participants. In collective cultures, disabilities are construed differently compared to Western cultures, which tend to be more individualistic. This variance in cultural perspectives might influence how aphasia is perceived, discussed, and managed, consequently shaping the significance of aphasia and the position it holds in the lives of PWA.
Bronken, B.A.; Kirkevold, M.; Martinsen, R.; Wyller, T.B.; Kvigne, K., 2012, Norway [58]	To explore how seven persons with aphasia experienced participating in a complex nursing intervention aimed at supporting the psychosocial adjustment process and promoting psychosocial well-being.	Complex health intervention development design, intervention study Participant observation, semi-structured interviews and standardized clinical instruments	N = 1 female, N = 6 male, age 33–72, 1–3 m.p.o.	The study showed several aspects appreciated by participants: opportunities for dialogue, enhanced confidence in expressing thoughts and feelings, motivation to persevere through the challenging recovery process, and an evaluation of their life situation as relatively positive, despite encountering both challenges and fluctuations. These aspects confirm the meaningfulness of a collaborative narrative process in addition to psychological support and motivation to move forward during the challenging adjustment process.
Bronken, B.A.; Kirkevold, M.; Martinsen, R.; Kvigne, K., 2012, Norway [61]	To illuminate how an interactive process of coconstructing stories was established between a person with aphasia and a nurse within the context of a longitudinal psychosocial intervention during the first year after stroke.	Single case, intervention study Phenomenological design Participant observation and semi-structured interviews	N = 1 female with aphasia, age 30, 1 m.p.o., N = 1 female nurse, age 50	The study showed an improvement in well-being with three underlying mechanisms emerging: the need to tell, opportunity to tell, and help telling.
Corsten, S.; Schimpf, E.J.; Konradi, J.; Keilmann, A.; Hardering, F., 2015, Germany [15]	To evaluate an adapted interdisciplinary biographic–narrative intervention using quantitative measures of health-related quality of life (HRQL) and mood. Additionally, semi-structured interviews were conducted to gain a deeper understanding of identity development processes in people with aphasia.	Mixed methods, intervention study Grounded theory design In-depth interviews and standardized clinical instruments	N = 15 male, N = 12 female, age 44–73, 6,5–208 m.p.o.	The study showed a significant growth of HRQL and improved mood from participants’ self-reports. Four identity issues emerged from the analysis: agency, control, disease concept, and doing things.
Musser, B.; Wilkinson, J.; Gilbert, T.; Bokhour, B.G., 2015, USA [52]	A qualitative study with the aim of understanding the lived experience of individuals with aphasia and the trajectory of the effect on their social identities, from primarily their own perspectives (and including input and amplification by their partners) in the months and years after their stroke.	Grounded theory design Semi-structured interviews	Cohort 1: N = 2 women, N = 10 men, Cohort 2: N = 2 women, N = 10 men, age 46–71 years old, cohort 1 recently experienced a stroke to 18 m.p.o., cohort 2 > 5 years p.o.	The study showed alterations in three identity aspects: occupational, family, and social aspects.
Pound, C.; Parr, S.; Lindsay, J.; Woolf, C., 2018, UK [38]	This book focuses explicitly on therapeutic techniques developed from a social model approach to disability and learning to live with difference. It describes theories, activities and methods of implementation developed from the work of Connect with people with long term aphasia.	Book published by academic publisher, chapter 5	N/A	N/A
Strong, K.A.; Lagerwey, M.D.; Shadden, B.B., 2018, USA [65]	To examine the experiences of persons who had engaged in a project to co-construct personal narratives about life with aphasia.	Phenomenological design, intervention study Semi-structured interviews and standardized clinical instrument	N = 3 men, age 55–66 years, 4–5 years post onset	The study showed three overarching themes that participants raised after engaging in the project: more than a story, a positive experience and hope. The co-construction process contributed to fostering a positive perspective on identity and empowerment, enhancing confidence both in communicative abilities and self-perception. These themes affirm the meaningfulness of participants’ engagement in co-constructing personal narratives concerning their experiences of living with aphasia.
Guerrero-Arias, B.E.; Agudelo-Orozco, A;. A. Pava-Ripoll, 2020, Colombia [53]	How does Margarita’s intersectional identities relate to social interaction?	Single case study Intersectional identity chronotopes design Participant observation and in-depth interviews	N = 1 female, age 31, 12 m.p.o.	The study showed that societal perceptions restricted identity development, agency, and aspirations, particularly as a black woman navigating intersecting oppressions.
Strong, K.A.; Shadden, B.B., 2020, USA [2]	To provide an overview of the relationship between narrative, identity, and social co-construction for persons with aphasia and of narrative treatment approaches targeting identity renegotiation. The intent is to provide speech-language pathologists (SLPs) with background on how these key concepts fit within the Life Participation Approach to Aphasia and to empower them to consider engaging in personal narrative co-construction with their clients.	Theoretical paper	N/A	N/A
Taubner, H.; Hallén, M.; Wengelin, A, 2020, Sweden [9]	To investigate self-identity construction, in terms of identity dilemmas, in working-age persons living with post-stroke aphasia in a digitalised society (i.e., Sweden). Are the dilemmas relevant to the participants, and if so, how do they navigate them online and offline?	Multi method qualitative design Problem centered interviews and participant observations (netnography)	N = 3 men, N = 6 women, age 29–61 years, 13–96 m.p.o.	The study showed that all three dilemmas of Bamberg’s [50] dilemmatic space theory are interrelated and of high relevance to the participants. Diverse environments, offline or online, require different ways to navigate the dilemmas. The internet provides a platform to tell stories of self that differ from those offline. The results showed that online narratives not only reflect pre-stroke identity, but also align with expected social behavior in current online settings.

Table A2. Descriptive summary of theory of the reports.

Theoretical premises and definitions of identity	Cited by
Cited theories from external scholars with brief explanations
Taylor [45,p.33] defines identity as “who we are, and where we are coming from,” which underscores the value of the concept of narrative identity.	Strong and Shadden [2] Shadden [42] Bronken et al. [58] Strong et al. [65]
Holstein and Gubrium [46] state that the personal self unfolds in social situations. As we engage in social interactions, the personal self forms as the central narrative through which we express our identity.	Shadden et al. [40] Shadden and Hagstrom [43] Shadden and Koski [44] Bronken et al. [61]
McAdams [47] suggests that individuals construct their sense of self by narrating personal stories to themselves and others, shaping the meaning of their lives.	Strong and Shadden [2] Corsten et al. [15] Shadden et al. [39,40] Shadden and Hagstrom [43] Bronken et al. [58]
Frank [48] proposes three types of illness narratives. Quest narratives in which illness is perceived as a journey in which meaning is sought. Restitution narratives focused on the restoration of health. Chaos narratives that depict a loss of control or disruption.	Pound et al. [38,57] Shadden et al. [40] Shadden and Hagstrom [43] Bronken et al. [58] Bronken et al. [61] Strong et al. [65] Hinckley [67] Barrow [68] Mitchell et al. [71]
Giddens [49] defines self-identity as the identity formed through an individual’s reflexive understanding of their own life story (biography).	Taubner et al. [9] Shadden et al. [39,40] Shadden and Koski [44]
Bamberg [50] proposes the identification of three practical challenges that self and identity formation processes are facing. These challenges are explained in dilemmatic spaces in which identity activities are narrated. The three dilemmas are: Successful diachronic navigation between constancy and change: “Becoming who I am” through time Creation of a synchronic connection between sameness and difference: “Who am I?” with regard to others Navigation of agency between the double-headed arrow of a person-to-world versus a world-to-person fit	Strong and Shadden [2] Taubner et al. [9]
Bruner [51] suggests that the relationship between life and narrative is reciprocal, both shaped through human rational processes. He argues that recounting one’s life is a cognitive achievement and fundamentally an interpretive act.	Strong and Shadden [2] Shadden et al. [40] Bronken et al. [58]
Norton [54] views identity as contradictory, dynamic and diverse, or “how a person understands his or her relationship to the world, how that relationship is constructed across time and space, and how the person understands possibilities for the future” [54,p.5].	Guerrero-Arias et al. [53]
Crenshaw’s [55] intersectional identity theory refers to the complex and interconnected nature of an individual’s identity, which encompasses multiple aspects, such as race, gender, class, sexuality and disability. Rather than considering each of these aspects separately, intersectionality emphasizes how these aspects of identity intersect and interact, shaping a person’s experiences, opportunities, and societal perceptions.	Guerrero-Arias et al. [53]
Polkinghorne [59] regards storytelling as fundamental to the continuous process of creating meaning and to self-understanding. Polkinghorne suggests that an individual’s narrative comprehension of their own life influences behavior that expresses this personal narrative. Language serves as a crucial tool for human interaction, social engagement, and community involvement. It is through language that we interpret and understand life events and experiences.	Bronken et al. [58] Bronken et al. [61]
Zoffmann’s [61] Guided Self-Determination approach supports participants gain new life skills to cope with the psychosocial impacts of stroke. The approach is based on principles of empowerment and emphasizes the significance of individuals taking charge of their own adaptation processes. Within this approach, the function of health care professionals is envisioned as that of a "supporter" or "coach," rather than that of a traditional "caregiver" or "therapist.	Bronken et al. [58] Bronken et al. [61]
Bury’s [63] biographical disruption theory refers to the effects of a major, unexpected event that profoundly alters the life story. From this perspective, chronic illness, such as aphasia, is considered as a disruptive event.	Corsten et al. [15] Shadden et al. [39] Pound et al. [38,57] Bronken et al. [58] Bronken et al. [61] Hinckley [67] Mitchell et al. [71]
Bauer et al.’s [64] state that identity is formed through the creation of life narratives in social interaction. Biographic self-thematization is seen as a continuous, collaborative process of making sense of experiences, using language as the primary medium. This process links the past, present, and future into a coherent storyline that gives life unity, purpose, and meaning, which are essential for mental health. Furthermore, the concept of quality of life is tied to finding meaning in life, highlighting the critical role of narrative identity in influencing quality of life.	Corsten et al. [15] Shadden et al. [40]
According to Ricoeur [4,62,66], people construct an understanding of who they are by giving meaning to the stories they exchange with others. This is what he calls narrative identity. Narrative identity is formed relationally and situationally in the present (synchronic) and evolves through time (diachronic).	Shadden et al. [39] Bronken et al. [61] Strong et al. [65] Mitchell et al. [71]
Somers [69] describes narratives as “stories one lives by” which are rooted in our beliefs, values, and worldviews, developed gradually and shaped by our personal, societal, and cultural circumstances. Individuals interpret disruptions by attempting to incorporate or reconcile them within these narratives.	Barrow [68]
Corker and French [70] state that individuals are exposed to a variety of complex narrative voices concerning disability, which shape their interpretation and understanding of what disability means. Within the social model approach, it is now recognized that the impacts of the impairment itself also play a role in shaping the experience of disability.	Barrow [68]
Hinckley [73] suggests that acknowledging identity through a narrative-based approach offers a holistic view. She emphasizes that the personal, social, and cultural environments of individuals living with communicative disabilities should be central to the research and clinical strategies of speech-language pathologists.	Armstrong et al. [72]
Original theories and definitions from reviewed reports with brief explanations
Pound et al. [38, 57] identify three types of identity. Personal identity involves the formation and consolidation of an individual’s sense of self, the personal biography. Social identity pertains to one’s inclusion in (or exclusion from) different social and cultural groups, communities, and institutions [78]. Collective identity focuses on a group’s sense of unity, equality, and purpose, typically characteristic of political and advocacy groups, where individual issues are subordinate to a certain extent.	Simmons-Mackie et al. [56]
Shadden et al. [39] designed the four-domain interdisciplinary framework of the narrative self to provide foundation for discussion of the narrative self in neurogenic communication disorders. This framework addresses four different dimensions of everyday life (cultural aspect, roles, situational interactions, biography) and underlying concepts out of which the self is constructed (agency and power) in order to discuss the narrative self.	N/A
Shadden and Agan [41] define identity as “a composite of roles, values, and beliefs that are acquired and maintained through social interaction” [38,p.175].	Simmons-Mackie et al. [56]
Corsten et al. define narrative identity as “the internal, dynamic life story that is constructed in order to create sense and meaningfulness” [15,p.796].	N/A

Table A3. Overview of (sub-)themes of identity changes in aphasia.

Themes	Sub-themes, originating from the analysis, illustrative examples and their sources
Communicative abilities	Language abilities Reduced language abilities [9,38,41–44,52,53,58,61,65,67,68,71,72] Loss of fluency in language timing and pace [9] Tiredness [40,58] Difficulties with concentration, understanding [58], and self-expression [40,58] Frustration when partner does not adjust communication appropriately [40]	Communicative access Reduced access contacting authorities, handling administration, participating in social situations, performing their jobs, and pursuing studies Social barriers [9,52,53,58] Lack of public awareness [38,40]	Social interaction Difficulty sharing their story [2,40,53], and engaging with others [40,52,58] Feeling stupid or boring in interaction [9] Difficulty participating in arguments and discussions [53] Withdrawing from and enjoying social situations less [40,52] Being less able to frame experiences in adaptive ways through language [52]
Society & culture	Narrative of disability as limited competence Split between “non-disabled” and those labeled “disabled” [71] Close relationship between aphasia and the concept of competence [38,40,53,68,71] Prejudice [9,68,71] Stigmatization [38,40,53,68] Assumptions of what characterizes successful individuals [38,40,68]	Narrative focusing on treatment and recovery Working hard and having faith will support recovery [9] Life revolves around activities that support improvement [68]	Intersectionality Being discriminated against because of ethnicity, gender or disability [53]	Culture Individual cultures in which communication problems and implications were explicitly reported [9,52,67,68,71] and PWA were interested to understand aphasia and brain function [71] Collective cultures in which disabilities are construed differently than in individual cultures [72]
Social situation	Importance of relationships Importance of grandchildren, family, friends [72], groups, and communities [40] Being needed gives the courage to continue [72]	Social network Changed social network [52,58] People disappeared [40,52,58] Divorce [40,68] Isolation [58]	Social support Social support is vital [9,52,67] Support received from unanticipated places [52] People not as helpful as expected [52]	Support groups and peers Support groups helpful environment to share stories and experiences about living with aphasia [40,41,56] Nice to meet people in the same situation [9,40] Feeling more comfortable to reveal and incorporate disability [9] Some become leaders and role models for their peers [9,52,71] Providing hope after stroke to other PWA [52,65]
Biography	Grief Loss of pre-stroke identity [9,38,40–44,53,61,65,67,68,71] Identity theft [40,42,71] Emotions Fear of not being themselves Failure [9] Frustration [9,72] Feeling overwhelmed by the change [52] Uselessness, sadness and confusion [72] Ambiguity Feeling distressed and at the same time feeling more relaxed than before [68] Difficulty accepting vs becoming a better person [9,40]	Struggle integrating identity changes in life Struggle with the realization not being the same person as before [9,40] Difficulty accepting vs becoming a better person [9,40] Suicidal thoughts [71,72]	Life stage Considered unfair by the young [40] The young feel different than peers older in age [9] The middle-aged fulfill many roles which causes considerable identity changes [40] Life philosophy Spirituality and religion [40]	Health and body function Significant health issues might cause aphasia being secondary to other conditions [72] Altered body function such as hemiparalysis, apraxia causes re-learning of everyday tasks and slower pace [9,53,72]
Agency & power	Recognition Looking for responsiveness of other people [43] Tensions between how PWA see themselves and how identity is perceived by others [9,40,53] Being treated as incompetent and docile [40] Feeling ridiculed [9] and not accepted as the person they have become [67] Perceived illness without actual condition [58] Feeling keen to show capability [72]	Managing recovery Reading the paper each day [72] Adult literacy, education, and writing skills training [67,72]	Activities Changes in social activities [15,52,58] Return to activity [15,52,67,71,72] Being capable, active, and finding different ways of self-expression [72]	Hope Restricted aspirations [53] Forward-looking attitudes with the establishment of new goals [67] There is life after stroke [61]

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