Identity (Re)constructions After Brain Injury

Personal and Family Identity

Chalotte Glintborg

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781351183765
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

Identity (Re)constructions After Brain Injury: Personal and Family Identity investigates how being diagnosed with acquired brain injury (ABI) impacts identity (re)construction in both adults with ABI and their close relatives.

To show how being diagnosed with ABI impacts identity (re)construction, this book investigates key patterns of identity construction. Discourse analysis, especially on the concept of positioning, provides an understanding of the changes and developmental processes in these self-narratives. These narrative (re)constructions point to a developmental change of identity in the course of the different phases of the recovery process for both persons with ABI and their relatives, including conflicting voices from society, service providers, relatives, and other adults with ABI. In addition, the (re)construction process is characterized by much ambivalence in both ABI survivors and relatives.

Three perspectives are triangulated: (1) an insider perspective from ABI survivors; (2) an insider perspective from relatives; and (3) an outsider perspective from the researchers. This allows us to see how identities are negotiated and constructed in concrete situations. This innovative book will be required reading for all students and academics working in the fields of disability studies, rehabilitation psychology, sociology, allied health, and social care.

Part I

Theoretical frameworks and methods

The following chapters unfolds the state of art in identity research in ABI and what methods used in narrative inquiry. In addition, a chapter will cover some of the dilemmas met while doing data collection in the private homes of adults with ABI and their close relatives.

1    Introduction

Once a person is diagnosed with ABI, there is a risk that this label can actually become the overriding means of defining the identity not only of that person, but also of that person’s whole family. Reification of the diagnosis of a brain injury can be oppressive, because it subjugates humanity in such a way that everything a person does can be interpreted as part of the neurological disability. This book sums up my research within the field of acquired brain injury (ABI) for the last six years, with a special focus on identity and identity (re)construction.

It started with my Ph.D. (Glintborg, 2015), which focused on coordination in ABI rehabilitation within a bio–psycho–social framework. More specifically, I investigated the effects of coordinated rehabilitation programs in Denmark. In addition, I also explored what helps or hinders positive rehabilitation outcomes, as seen from an ABI survivor’s and their relatives’ perspectives.

My research centers on three main areas: (1) development within brain injury rehabilitation, (2) the bio–psycho–social model as operationalized by the International Classification of Functioning (ICF), and (3) rehabilitation as seen from an ABI survivor’s and their relatives’ perspectives. Neuroscience has developed from seeing the brain as an organization of specialized modules to seeing it as a complex collaboration between different centers, with a capacity for change and relocation of functions (neuroplasticity). In addition, research has shown that bio–psycho–social aspects interact, e.g. emotional needs affect cognitive functions and vice versa (Cicerone & Fraser, 2000). Therefore, rehabilitation should be based on a comprehensive bio–psycho–social approach. The United Nations (UN) and the World Health Organization (WHO) recommend rehabilitation based on a multidisciplinary, coherent approach. The UN Convention on the Rights of Persons with Disabilities, Article 26, describes the requirements for habilitation and rehabilitation as follows: “Services and programs begin at the earliest possible stage and are based on the multidisciplinary assessment of individuals’ needs and strengths …” (United Nations, 2006). The WHO defines rehabilitation as follows:

Rehabilitation of people with disabilities is a process aimed at enabling them to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides disabled people with the tools they need to attain independence and self-determination.

(WHO, 2011)

Furthermore, the WHO recommends the ICF (the bio–psycho–social model) as a framework for disabilities. After ABI, the psychosocial aspects of recovery are known to be a particular challenge in rehabilitation practice (Morton & Wehmann, 1995; Teasdale & Engberg, 2004; 2005). Therefore, my research specifically focuses on the psychosocial outcomes of rehabilitation programs. In my Ph.D. and my postdoctoral follow-up study, I used a prospective, naturalistic, mixed-methods design to investigate bio–psycho–social recovery outcomes and perceptions of the rehabilitation programs. The empirical data was derived from 82 adults aged 18–66 years with a moderate or severe ABI and 40 of their relatives. Quantitative data were gathered from psychometric tests (Functional Independence Measure, FIM; Major Depression Inventory, MDI; WHO Quality of Life, WHOQOL (BREF); Impact on Participation and Autonomy Questionnaire, IPAQ), as well as information on return to work. The qualitative study was based on interviews with persons with ABI and their relatives about factors they see as important for recovery.

For further reading, the results of the Ph.D. were reported in four empirical articles (Glintborg & Jensen de López, 2014; Glintborg, 2015; Glintborg & Hansen, 2016; Glintborg, Thomsen, & Hansen, 2018). In summary, my research concluded that coordinated rehabilitation programs did not influence bio–psycho–social outcomes. The tests revealed that ABI survivors experienced the same level of difficulties after receiving support from the new program as the group that underwent the standard rehabilitation. The total FIM scores for persons with ABI were above the cut-off for independence at discharge from the rehabilitation center and remained stable at follow-up. With regard to psychosocial outcomes, one-third of all clients showed signs of depression and more than half (60 percent) of all clients experienced dissatisfaction with physical, environmental, and psychological quality of life (QOL). Furthermore, 50 percent of all clients reported problems in their family relationships. These bio–psycho–social outcome levels resonate with levels found in other studies (e.g. Morton & Vehman, 1995; Hall, Mann, High, Kreutzer, & Wood, 1996; Jorge et al., 1993; Jorge et al., 2004; Teasdale & Engberg, 2004; 2005; Hackett & Anderson, 2005; Brenner & Homaifar, 2009). However, the qualitative study revealed some of the factors that might improve rehabilitation outcomes (see Glintborg, Thomsen, & Hansen, 2018).

Identity loss after ABI was revealed as a dominant theme across all 82 persons with ABI at one-year follow-up. The analysis revealed a developmental change of identity in the course of the different phases of the rehabilitation and recovery process. Furthermore, conflicting voices were identified from society, service providers, relatives, and the adults with ABI themselves. In addition, the reconstruction process was characterized by much ambivalence. These results were discussed in the light of current identity research in Glintborg (2015). The use of a narrative approach in rehabilitation was suggested in order to help individuals transform into new narrative identities. After the Ph.D., I had the opportunity to follow the participants who took part in my Ph.D. research in a longitudinal study (five-year follow-up). The qualitative part of my Ph.D. and the five-year follow-up form the empirical grounding of this book with a special focus on identity and identity (re)construction in adults with ABI and families up to five years post-injury. In addition, three colleagues and I carried out a study of the role of peer support groups in identity (re)construction, which is also included in this book (see Chapter 11). The aims of the study were to expand our current knowledge of peer support groups for individuals with ABI and to contribute to our understanding of how the process of identity (re)construction is influenced by participation in such a group.

Thus, this book highlights how being diagnosed with ABI impacts identity (re)construction after ABI in both adults with ABI and their close relatives. Throughout the book, three perspectives are explored – (1) an insider perspective from ABI survivors; (2) an insider perspective from relatives; and (3) an outside perspective from researchers – in order to illustrate how identities are negotiated, and constructed in concrete situations.

This book describes key patterns of identity construction found in this research. It unfolds reconstructions of identity through self-narratives by appeal to methods of discourse analysis, drawing especially on the concept of positioning, and placing particular focus on changes and developmental processes in these self-narratives.

References

Brenner, L. A. & Homaifar, B. Y. (2009). Development-acquired TBI and suicidality: Risk and assessment. In L. Sher & A. Vilens (Eds.). War and suicide (pp. 189–202). Hauppauge, NY: Nova Science Publishers.

Cicerone, K. D. & Fraser, R. T. (2000). Counselling interactions for clients with traumatic brain injury. In R. T. Fraser & D. Clemmons (Eds.). Traumatic brain injury rehabilitation: Practical vocational, neuropsychological, and psychotherapy interventions (pp. 95–127). Boca Raton, FL: CRC Press.

Glintborg, C. (2015). Grib mennesket. En konceptuel og empirisk undersøgelse af koordineret rehabilitering: objektivt bio-psyko-social udbytte for voksne med erhvervet hjerneskade samt klienters og pårørendes oplevelse af rehabiliteringen med og uden kommunal coordination [Seize the self! An empirical mixed methods study of the bio–psycho–social recovery outcomes and perceptions of a coordinated neurorehabilitation program]. Ph.D. thesis, The Faculty of Humanities. Aalborg, Denmark: Aalborg University. Available at: http://www.hcci.aau.dk/digitalAssets/129/129472_chalotte_glintborg_phd-afhandling.pdf.

Glintborg, C. & Hansen, T. (2016). Bio–psycho–social effects of a coordinated neurorehabilitation program: A naturalistic mixed methods study. NeuroRehabilitation, 38(2), 99–113.

Glintborg, C. & Jensen de López, K. (2014). Koordination i et nyt lys – sikring af de psykologiske indsatser i hjerneskaderehabiliteringen [Coordination in a new light – ensuring the psychological efforts in brain injury rehabilitation]. Psyke & Logos, 34(2), 228–246.

Glintborg, C., Thomsen, A., & Hansen, T. (2018). Beyond broken bodies and brains: A mixed methods study of mental health and life transitions after brain injury. Brain Impairment, 19(3), 215–227.

Hackett, M. L. & Anderson, C. S. (2005). Predictors of depression after stroke. A systematic review of observational studies. Stroke, 36(10), 2296–2301.

Hall, K. M., Mann, N., High, W. M., Kreutzer, J. S., & Wood, D. (1996). Functional measures after traumatic brain injury: Ceiling effects of FIM, FIM+FAM, DRS and CIQ. Journal of Head Trauma Rehabilitation, 11(5), 27–39.

Jorge, R. E., Robinson, R. G., Arndt, S. V., Starkstein, S. E., Forrester, A. W. ,& Geisler, F. (1993). Depression following traumatic brain injury: a 1 year longitudinal study. Journal of Affective Disorders, 27(4), 233–243.

Jorge, R. E., Robinson, R. G., Moser, D., Tateno, A., Crespo-Facorro, B., & Arndt, S. V. (2004). Major depression following traumatic brain injury. Archives of General Psychiatry, 61(1), 42–50.

Morton, M. V. & Wehman, P. (1995). Psychosocial and emotional sequelae of individuals with traumatic brain injury: A literature review and recommendations. Brain Injury, 9(1), 81–92.

WHO (2011). World Report on Disability. [online] World Health Organization. Available at: https://www.who.int/disabilities/world_report/2011/report.pdf.

Teasdale, T. W. & Engberg, A. W. (2004). Psychosocial outcome following traumatic brain injury in adults: A long-term population-based follow up. Brain Injury, 18(6), 535–545.

Teasdale, T. W. & Engberg, A. W. (2005). Psychosocial consequences of stroke: A long-term population-based follow-up. Brain Injury, 19(12), 1049–1058.

United Nations (2006). International convention on the rights of people with disabilities. [online] United Nations Official Website. Available at: http://www.un.org/disabilities/convention/conventionfull.shtml.

2 Self-identity in people with acquired brain injury

Research in self-identity after acquired brain injury was addressed in a keynote speech by Professor Barbara Wilson in 2010 as one of the top ten cutting-edge developments in the field of neurorehabilitation. It is crucial to understand the means and interplay between brain systems, cognition, and personal and social identity. Based on this, Ownsworth wrote the first book dedicated to self-identity issues after brain injury (Ownsworth, 2014). In comparison to psychological adjustment after brain injury (e.g. coping), the literature focusing specifically on identity and identity reconstruction after ABI is relatively sparse. However, there is a growing body of studies demonstrating the negative impact of ABI on identity (e.g. Nochi, 1998; Gracey, Evan, & Malley, 2008; Glintborg, 2016). A meta-synthesis by Levack, Kayes, and Fadyl (2010) of 23 qualitative studies found that six of the eight major themes regarding experiences with brain injury were related to disconnection with self (compared to pre-injury self) and reconstructing identity, place in the world, and personhood. This disconnection was attributed to complex changes in functioning and life situation. A more recent review by Beadle, Ownsworth, Fleming, and Shum (2016) of 15 studies also provided evidence of mostly negative changes to self-concept. Changes in physical appearance have also been found to contribute to poor self-concept after ABI due to perceived or actual negative reactions from the public (e.g. Morris et al., 2005). A study by Jumisko, Lexell, and Soderberg (2005) found that people with traumatic brain injuries described their body as “an enemy” due to physical symptoms (e.g. fatigue, pain, etc.). Thus, the impact of physical impairment and loss of mobility on the sense of self has received the most attention in the ABI literature.

A study by Ownsworth, Fleming, Strong, Radel, Chan, and Clare (2007) found that, although awareness deficits and executive impairment may not preclude functional gains, individuals with these characteristics might not experience the same degree of psychosocial recovery as individuals with good awareness. Thus, individuals with neuropsychologically-based awareness deficits could potentially benefit from early intervention to enhance their psychosocial adjustment.

However, memory impairment has also received considerable attention in the literature. The subjective experience of people suffering from amnesia was explored by Nochi (1997; 1998) who referred to blank periods of memory loss as a void, which disrupted adults’ understanding of past and present and threatened their sense of agency. Cloute, Mitches, and Yates (2008) also investigated memory problems and how they affected people’s ability to offer personal accounts, thus contributing to passive positioning within the medical sy...