Headwork 1: ‘Talk-about’ cards relevant to the literature on IQ loss
3.3.2 Memory Loss After ABI
There were numerous studies around memory and ABI in the literature reviewed—working memory, prospective memory, deficits in attention and memory, bilateral damage to important structures of the brain and ways to improve prospective memory (Fleming, Shum, Strong, & Lightbody, 2005; Gil, Caspi, Ben-Ari, Koren, & Klein, 2005; Raskin & Sohlberg, 2009; Roche, Fleming, & Shum, 2002; Roche, Moody, Szabo, Fleming, & Shum, 2007; Sunderland, Harris & Baddeley, 1983). Memory impairments are among the greatest impediments to people returning to work, but may be one area of cognition that can respond to restorative intervention (Raskin & Sohlberg, 2009), a point we shall rely upon and which is further discussed in Chap. 6 in relation to learning.
Findings from these studies highlight difficulties people with ABI experience with encoding, performance and executing phases of prospective memory, which is the foundation of an intention and remembering to perform the intention. Evaluation of the effectiveness of rehabilitation methods, the frequency of memory lapses and working memory difficulties were identified. Schacter and Slotnick (2004) state that memory can be ‘distorted’ while Schacter, Chiao & Mitchell (2003) posit that ‘…not only is our sense of self based on memories of past experience…but our retrieval, recollection, and reconstruction of the past is, reciprocally, influenced by the self’ (p. 227). The authors conceptualise this with a metaphor of ‘The Seven Sins of Memory’ or ‘flawed memory experiences’ (Schacter et al., 2003, p. 227) which include, transience (refers to forgetting over time), absent-mindedness (refers to lapses of attention), blocking (temporary inaccessibility of stored information), misattribution (attribution of memories to incorrect sources or believing you have seen/heard something you haven’t—distorted misinformation), suggestibility (distorted or invented including bias) and persistence of memories (unwanted recollections for example with post-traumatic stress disorder).
If memory cannot be relied upon (Schacter et al., 2003) how reliable are the test results of people with brain injury? Could their assessment results differ on another day, or another hour of the day? For the purposes of this study, all these factors were considered (Figs. 3.2 and 3.3).
Headwork 2: The memory difficulties of the participant should be considered in the method of data collection
Headwork 3: ‘Talk-about’ cards relevant to the literature on memory loss
3.3.3 Depression/Suicide After ABI
Depression and suicide were also well represented among the articles reviewed. Clinical studies have reported high rates of suicide attempts (18%) and clinically significant suicidal thoughts (20–21%) (Simpson & Tate, 2002). The prevalence, symptoms, significance of cognitive impairment and depression and suicide have been widely reported (Fann, Uomoto, & Katon, 2001; Hoofien, Gilboa, Vakil, & Donovick, 2001; Jorge, Robinson, Moser, Tateno, Crespo-Facorro, & Arndt, 1993; Jorge, Robinson, Moser, Tateno, Crespo-Facorro, & Arndt, 2004; Kreutzer, Steel & Gourley, 2001; Rapoport, McCullagh, Streiner, & Feinstein, 2003). These studies employ a range of formalised objective assessment measures (Figs. 3.4 and 3.5).
Headwork 4: The depression and emotional fragility of the participant should be considered in the method of data collection
Headwork 5: ‘Talk-about’ cards relevant to the literature on depression
3.3.4 Fatigue After ABI
A large number of scales have been developed that attempt to measure the nature, severity and impact of fatigue. Dittner, Wessely and Brown (2004, p. 157) report details of 30 scales and recommend that scales are selected to suit the clinician’s needs and that existing and new scales are developed and validated.
Fatigue greatly influences the post-ABI life of the person, and there have been innumerable studies employing different ways to measure and compare fatigue between people with and without ABI. There were many surveys, interviews, questionnaires and scales for the researcher to employ. Once again though these are subject to comment, it is the findings that preoccupy us here. Findings of these studies, which include those conducted with people who have ABI, report significantly greater levels of fatigue than the general population, increased daytime sleepiness, lack of energy and exhaustion (Borgaro, Baker, Wethe, Prigatano, & Kwasnica, 2005; La Chapelle & Finlayson, 1998; Olver, Ponsford, & Curran, 1996; Ziino & Ponsford, 2006a, 2006b) (Figs. 3.6 and 3.7).
Headwork 6: The fatigue of the participant should be considered in the method of data collection
Headwork 7: ‘Talk-about’ cards relevant to the literature on fatigue
3.3.5 Coping Strategies of People with ABI
Studies around emotions and coping (Bornhofen & McDonald, 2008; Pagulayan, Hoffman, Temkin, Machamer, & Dikmen, 2008), emotional and executive functioning (Douglas, 2010; Garcia-Molina, Bernabeu, Guitart, & Roig-Rovira, 2010) have examined ways people cope with ABI. During rehabilitation, and post-rehabilitation, studies have been conducted into community programs (Vander Laan, Brandys, Sullivan, & Lemsky 2001; Ylvisaker, Feeney, 1998), intimacy (Aloni, Keren, Cohen, Rosentul, Romm, & Groswasser, 1999; Gill, Sander, Robins, Mazzei, & Struchen, 2011), assessing care and support needs (Ladanyi & Elliot, 2008; Turner-Stokes, Williams & Johnson, 2009). Studies into peer support suggest that peer support can enhance coping and can also help offset loneliness and the disruption of social support that can be associated with brain injury (Hibbard et al., 2002; Struchen, Davis, Bogaards, Hudler-Hull, Clark, & Mazzei, 2011).
There have also been studies of people with ABI that have investigated coping strategies and relationships between coping, apathy, depression, denial and avoidance and emotional adjustment (Anson & Ponsford, 2006a,b; Curran, Ponsford & Crowe, 2000; Ownsworth, Desbois, Grant, Fleming & Strong, 2006; Ownsworth, Fleming, Strong, Radel, Chan & Clare, 2007).
High levels of emotional distress have been shown to affect coping; higher levels of depression were associated with coping strategies characterised by worry, wishful thinking and self-blame; strategies that focus on problem-solving and having a positive outlook were related to lower anxiety levels. Major coping types identified include emotion-focused, problem-focused, perception-focused and avoidance coping. Once again inventories with good statistical properties were widely used in these studies (Fig. 3.8).
Headwork 8: ‘Talk-about’ cards relevant to the literature on coping
Chapter 4 will review qualitative studies around coping, resilience and quality of life.
3.3.6 Pain Following ABI
The incidence of pain following brain injury shows that chronic pain is a significant problem in mild, moderate and severe TBI (Lahz& Bryant, 1996); that shoulder pain after TBI is a clinical issue that has not been well researched or recognised (Leung, 2006) and that pain is quite common because the nature of many ABIs being the result of accident (Sherman, Goldberg & Bell, 2006) (Fig. 3.9).
Headwork 9: ‘Talk-about’ cards relevant to the literature on the consequences of pain
3.3.7 Self-awareness After ABI
Self-awareness is another important area that has been the focus of studies examined in the review. Fleming, Lucas and Lightbody (2006) posit that self-awareness is a complex phenomenon that impedes the rehabilitation process and outcome. Their study provided an individualised program to improve self-awareness. These programs were successful but, in all four cases, were accompanied by anxiety. Ownsworth et al., (2007) studied awareness and long-term adjustment, and different awareness typologies were identified. Individuals with good self-awareness and high defensiveness demonstrated the most favourable outcomes. Ownsworth, Desbois, Grant, Fleming and Strong’s (2006) study of the associations between self-awareness and emotional wellbeing empirically supported the theoretical view that an increase in self-awareness is associated with improved employment status. Fleming and Ownsworth’s 2006 review of awareness interventions in brain injury rehabilitation was conducted because ‘…unawareness related to brain injury has implications in rehabilitation, functional outcomes, and the emotional well-being of clients’ (Fleming & Ownsworth, 2006. p. 74).
Lam, McMahon, Priddy and Gehred-Schultz (1988) posit that self-awareness increases participation in rehabilitation and Ezrachi, Ben-Yishay, Kay, Diller and Rattok (1991) link self-awareness to successful community and vocational reintegration. A correlation has also been found between self-awareness and emotional distress (Fleming, Lucas, & Lightbody, 2006; Fleming & Ownsworth, 2006; Fleming, Shum, Strong & Lightbody, 2005; Fleming & Strong, 1999; Fleming, Strong, & Ashton, 1998; Lezak & O’ Brien, 1988; Roche, Moody, Szabo, Fleming & Shum, 2002).
Research has shown that clients with better self-awareness of their impairments have better participation or involvement and compliance in rehabilitation (Fleming et al. 1998, 2005). Thus, there is a complex interaction between self-awareness and compliance. Self-awareness and compliance will be issues to address in the Keys Study (Fig. 3.10).
Headwork 8: Participants may lack self-awareness therefor the method should assist them to reflect
3.3.8 Post-traumatic Stress Disorder After ABI
Studies also evaluate the relationship between acute stress and post-traumatic stress, memory and amnesia (Bryant & Harvey, 2000; Harvey & Bryant, 1998 1999; Gil, Caspi, Ben-Ari, Koren and Klein, 2005). There are other studies about persistent post-concussive symptoms and post-traumatic stress disorder (PTSD) as a consequence of war by Schneiderman, Braver, and Kang (2008); Hoge, McGurk, Thomas, Cox, Engel and Castro (2008) and Ohry, Rattok and Solomon (1996). Bryant, Marosszeky, Crooks, Baguley and Gurka (2000) investigated the effect of PTSD on rehabilitation after severe ABI. Once again scales with strong statistical properties were adopted in all these studies (Fig. 3.11).
Headwork 9: Trauma can play a part in how participants react in interviews
3.3.9 Learning Difficulties After ABI
Studies suggest learning difficulties can result from ABI through the combination of cognitive, memory, sight, hearing and understanding impairments that result from damage to the brain. There are many studies in regard to such learning disabilities: Siegal (1989, 1999), Sternberg and Spear-Swerling (1999), Stanovich (1991), Swanson (1993a, b), Wagner and Garon (1999) and Wong (1996). This topic will be examined at length in Chap. 5, which focuses upon education and learning (Fig. 3.12).
Headwork 10: Participants may have comprehension and learning difficulties
3.3.10 Cognitive Rehabilitation Therapy
Perhaps one of the closest links between therapeutic intervention and re-engagement in everyday life was in the area of cognitive rehabilitation therapy. Several articles were found in the review of this area. Cognitive rehabilitation therapy is a process of re-learning cognitive skills that have been changed or lost because of damage to the brain cells or chemistry. It involves education about cognitive weakness and strengths, process training—practicing cognitive skills, strategy training and functional activities training. Harley et al. describe it as ‘reinforcing, strengthening, or re-establishing previously learned patterns of behaviour, or establishing new patterns of cognitive activity or compensatory mechanisms for impaired neurological systems’ (1992, p. 63).
Giles (2010) conducted one of the largest randomised controlled trials of rehabilitation after traumatic brain injury to examine the theoretical relationships between cognitive and functional rehabilitation. The study added to the evidence base supporting neurofunctional intervention in addition to standard care in improving independent living skills in people with moderate or severe TBI.
Schoenberg et al. (2008) compared outcomes of patients who received computer-based cognitive therapy with participants who received face-to-face speech–language rehabilitation and established that similar outcomes at a similar cost were the result. Carney et al. (1999) ascertained that specific forms of cognitive rehabilitation reduce memory failures and anxiety and improve self-concept and interpersonal relationships. Cernich, Kurtz, Mordecai, and Ryan (2010) explain current treatment options, and Grealy, Johnson and Rushton (1999) used exercise and virtual reality to improve cognitive function. They concluded that exercising in a virtual environment offers the potential for significant gains in cognitive function. Yet Kay and Lezak (1990) warn against ‘The Rehab Wizard’—where people with brain injury and their families feel let down by the belief that cognitive retraining would be the answer to behavioural and cognitive difficulties.
The links between cognitive function and re-engagement with everyday life are obvious. The objective measurement, based upon pre-established understanding of cognition, establishes an important framework through which to maximise cognitive functioning. However, the objectification of the person’s cognitive skills can miss the connections between cognition and other aspects of the person’s life, and the person’s view is an important feature as a focus for re-engagement in everyday life. Cognitive rehabilitation therapy involves professional intervention, and there are computer-based programs that can be used by the person once they have returned home. In Chap. 5, more will be said of the links between cognition, learning and ABI.
3.3.11 Other Areas of Focus in Studies
Studies of the ‘effect of ABI on the family’ of people with ABI examine the needs of the family members of patients with severe TBI. Bond, Draeger, and Mandleco and Donnelly (2003) concluded that ‘the need to know, the need for consistent information and the need to make sense of the experience was vital’ (Verhaeghe, Defloor, & Grypdonck, 2005).
There are also studies that touch upon social identity and social support, which have been viewed from different perspectives with various discoveries. These include the following: cognitive deficits have been found to bring the person closer to family (Haslam, Jetten, Postmes & Haslam, 2009); identity crisis and disruption associated with ABI (Teasdale & Engberg, 2001) and social isolation and a relaxed way of living in rural areas has been found to accommodate the fatigue of the person with ABI (Jones & Curtin, 2010). Community integration involving relationships with others, independence in one’s living situation and activities to fill one’s time have been recommended in McColl et al.’s (1998) study.
3.4 Some Reflections on Quantitative Body-Object Research
More needs to be said about the body-object literature as a collective body of knowledge and its relevance relationship to the present study.
The studies above show particular foci, most of which are based around deficits. Another indicator of the breadth and depth of interest was the range of topics investigated in research articles in the Journal of the Australian Society for the Study of Brain Impairment in the two years following the above literature review: memory (23 articles), communication (10), cognition/motivation (9), community rehabilitation support (8), rehabilitation outcomes (5), residential care (4), executive function (4), anxiety (4), social behaviour (3) and family (3). Two or less articles were found on: neural cells/genes, physical fitness/leisure activities, behavioural change, goal setting, depression, dementia, emotional adjustment, emotional impact hospital to home, occupational issues, early recovery rates, reasoning and positive psychology. The authors understand that approximately 90% of articles published in this journal have been quantitative studies.
As demonstrated by information under the ‘Headwork’ headings, the development of Keys to the ABI Cage drew upon this literature. The literature review was used to inform the process through which to engage people with ABI so as to do no harm. It was anticipated that they might be suffering from IQ loss, memory impairment, depression (even suicidal thoughts), fatigue, lack of self-awareness, post-traumatic stress disorder, difficulty coping and pain. Thus, it was acknowledged that we would be approaching and engaging fragile, vulnerable people to reflect upon their ABI experience.
The ‘talk-about’ cards, which were a central part of the process, ‘translated’ difficulties participants may be experiencing, and the differences between their pre- and post-ABI life into everyday, colloquial comments upon which they could choose to reflect if they wished.
However, the approach of the medical model is that ‘defects or failure of a bodily system are detected and … goals of intervention are cure, amelioration of the physical condition to the greatest extent possible’ (Olkin, 1999, p. 26). The literature reviewed has demonstrated how specific difficulties/differences/deficits have been separated for specific examination by experts in various fields. But it is the combination of the total of the overlapping difficulties/differences/deficits that affect the lived experience or lifeworld of people with ABI. Moreover, these must be set against the positive aspects of their lives, which are seldom if ever mentioned.
The importance of the difficulties/differences/deficits (IQ and memory loss, depression, cognitive rehabilitation therapy, fatigue, lack of self-awareness, post-traumatic stress, coping and pain) cannot be ignored. These topics focus upon and consider answers to blank spots, areas that have been identified as some of the things that are more likely to be found among people with ABI. However, these studies above are largely second-order accounts, which may fail to establish the self-reported impact and meaning from a person-first perspective.
Tests for IQ or memory loss are not the same as the initial medical tests conducted in the acute hospital stage to determine the damage to the person’s brain (e.g. magnetic resonance imaging; computed tomography or computerised axial tomography; electroencephalogram; position emission). These medical tests are used to ‘prove’ the physical brain has been damaged.
It is more difficult to prove ABI through IQ and other tests, and tests may not identify how the person feels because of their ABI. Some people feel uncomfortable about others judging and knowing about their difficulties, and there are many reasons why a person may perform a test badly or well at the time of these tests. These reasons might include, inter alia, motivation, whether or not they are having a good or bad day, time of day the test is given and so forth, but test results are taken to be of great importance when used in legal proceedings. The body-object perspective investigated by these studies ‘filters down’ to be reported in Web-based material, as the basis for information in many brain injury support Websites. For the person with ABI, reading about possible difficulties/differences/deficits can be valuable because they provide information so they realise they are not imagining things and that they are not alone, but there may be little information to aid or help the person adapt, cope and re-engage in life, and the reporting may reinforce the view that they are ‘more damaged’ and ‘less normal’ than the rest of society. A positive approach would at very least address the issues of coping and adaptation more systematically as well as listing and describing deficits.
Viewed from the ‘body-object’ perspective, ABI leads to the assumption that a formulaic piece-by-piece response by medical and rehabilitation practitioners is all that can be done. But, as will be shown, this perspective is problematic as the approach is one based on defining problems and not about examining the positive aspects of the person’s life.