The Body-Subject Perspective of ABI—A Literature Review of Qualitative Studies

The Blind Men and the Elephant: John Godfry Saxe (1816–87) (see Saxe, 1995 )

It was six men of Indostan

To learning much inclined,

Who went to see the Elephant

(Though all of them were blind)’

That each by observation

Might satisfy his mind

The First approach’d the Elephant,

And happening to fall

Against his broad and sturdy side,

At once began to bawl:

“God bless me! But the Elephant is very like a wall!”

“….like a spear!” “….like a snake!” “….like a tree!” “….like a fan!”

So oft in theologic wars,

The disputatants, I ween,

Rail on in utter ignorance

Of what each other mean,

And prate1 about an Elephant

Not one of them has seen.

A432584_1_En_4_Figb_HTML.gif Elephant: Christine Yvonne Durham after John Godfry Saxe

The outside of an Elephant

Is made up of different parts

But that’s not all Elephant is, Elephant has mind and heart

Elephant’s more than leg and trunk and hide and eyes and meat.

Elephant’s more than tail and ears and side and tusk and feet.

In circus, zoo, and forest too

Elephant works in fields and more

A family pet, a faithful friend,

He can run amok and gore.

Carrying tourists, logs or heavy loads, his attributes are many

But rogue and wild, and strong and huge, Elephant’s very scary!

Why, oh why, I ask you,

Does this massive wrinkly beast

Disobey his master

Or sit upon a seat?

He sways and dances (it is true) when tethered to a stake

When looking into all of this, of sense we cannot make

The essence of the Elephant

Is mighty hard to find

It’s not locked up in books or film

Or held in someone’s mind

If only Elephant could speak, and tell us what he knows

Then, and only then, could we discover how he goes.

In this light, ‘mending bodies’ is not the only way to perceive ABI, nor treat people with ABI, and as will be demonstrated in this chapter, the body-object approach misses a large portion of the phenomenon that is of importance to the insiders, to people with ABI who question ‘Will I ever feel better?’ ‘Will life always be this awful?’ ‘I’m lost, how can I find myself?’ (Durham, 1997).

This study was approached from the insider’s perspective and author Durham placed herself as a ‘visible researcher’ (Denzin, 1997), exploring the insider’s, body-subject, emic view introduced in Chap. 1. As joint authors, we will commence by considering the person with ABI as being more than the sum of their parts. Subsequent to introducing phenomenology in Chap. 3, the concept of ‘intentionality’ will be revisited and its links with qualitative academic literature and with feminist perspectives drawing upon personal narratives and insider’s views will be explored as an alternative.

This chapter will establish the place of this study within the body of work of qualitative body-subject research: research that focuses on ways people experience ABI. The review of qualitative studies, together with the perspectives discussed in this chapter, informed the methodology employed in the ‘Keys Study’. Chapter 5 will continue to provide a background to the methodology by reviewing relevant learning theories and concepts from educational literature.

4.1.1 Intentionality: Another Way to Consider ABI

In Chap. 3, the place of phenomenology as an alternative ontology to those grounded in a scientific or the hypothetico-deductive model was introduced. Two requirements for a study methodology follow. First, if phenomenology is a suitable ontology (philosophy of being), then what is its epistemology—its philosophy of knowledge? Secondly, and subsequently, how can such an epistemology be operationalised?

Phenomenology, a philosophical movement of the early twentieth century, had immense influence on continental Europe. Developed as a theory of knowledge by Edmund Husserl (1859–1938) in his book Ideas: A General Introduction to Pure Phenomenology (1913), it offers a descriptive analysis of ‘essences’ in general. ‘Essences’ (from the Greek eidos ‘form’—exceptionally vivid visual or auditory images that allow detailed recall of something previously perceived) were not only objects (such as an object of sense-perception) but also acts of consciousness. The phenomenologist must ‘bracket’, suspend judgment or perform an ‘epoché’, the ‘natural attitude’ to the world. Phenomenology asserts that through ‘eidetic’ or ‘intuitive’ approaches we have knowledge of the essential features of the lifeworld, which phenomenologist’s term ‘essences’.

One of the major presuppositions of phenomenology is that people have an intention to an object. As already argued, the seemingly hard fact of a stone might, given differing intentionality, for a physicist a series of atomic and subatomic forces—for a petroleum prospector, a focus for analysis of hydrocarbon presence—for an artist, its aesthetic—or for a person being attacked, a source of defence. The intentionality towards the stone is defined in its usage. The phenomenological researcher tries to find the essence of a phenomenon from a particular perspective—in this case from the experiences of people with ABI. This does not involve an hypothesis or preconception but focuses on the ‘how’ and ‘why’ of everyday intuitive lived experience—again, in this instance of the experience of ABI—rather than the ‘how much’ or ‘how many’ of the scientific positivist position.

Since the second century, when problems of brain injury were first recorded, people were searching for a way to make ‘broken heads’ ‘better’. The old nursery rhyme ‘Jack and Jill’ (1795) tells the story of two children who went up and fell down a hill—Jack fell down, and broke his crown, and went to bed to mend his head with vinegar and brown paper (an old remedy used to treat wounds, bruises and other injuries). This study aimed to find a new way to help ‘mend’ broken heads.

An alternative and more sinister origin of this rhyme, suggests another theory about the head, and offers another way to view brain injury. ‘Jack and Jill’ is claimed to tell the story of King Louis XVI’s (Jack’s) beheading (lost his crown) followed by Queen Marie Antoinette (Jill) whose head came tumbling after. The executioner held Louis XV1’s severed head aloft, by the hair, to allow the head to gaze on its body as consciousness was believed to remain for at least eight seconds after beheading until lack of oxygen caused unconsciousness and eventual death.

For many people, ABI is akin to ‘losing their head’. Like King Louis’s eyes gazing at its own body, they can observe their own body and life, but they are quite disconnected from it. In a split second mind, memory, movement and hope can vanish leaving the individual with ABI profoundly damaged, unable to understand, unable to call on prior knowledge, unable to find a way forward. It is as if they have ‘lost’ their head, ‘lost’ themselves, and ‘lost’ their life as they knew it. Over time, they can spiral down feeling discouraged, desperate, humiliated, worthless and disorientated (Durham, 1997) because to improve cognitively and physically is a long, slow process.

Phenomenology is a philosophy in which a person reflects and speaks about their interpretational narrative of their experience (Giorgi, 1985a, b). Each person is unique and they can engage in personal understandings and discovery and explore the meaning of that experience. Above we can see two competing narratives in relation to Jack and Jill. Neither may be wrong—each differs given how we intentionally engage with the rhyme, whether an historical allegory or as a narrative on the contemporary treatment of the day.

The contention in this book is that, like the blind men approaching the elephant, ‘mending bodies’ by adopting a singular and biomedical intentionality misses the whole and ignores the experiences of people with ABI as they seek to re-engage with their everyday lives.

This study posed the question: Given new understandings of the experiences and intentioned actions of people with ABI, can we find a new or different way to reconnect head, body, life and dreams for people who suffer from ABI?

We have sought to show above how a phenomenological ontology (a philosophy of being) gives rise to a study epistemology (a philosophy of knowledge) and an alignment has been established between these in opposition to a positivist stance. However, for an empirical study, a philosophy of knowledge has to be operationalised—to be translated into a methodology. Van Maanen (1990), writing about phenomenological research in education, relates ‘experience’ to our direct acquaintance of things, the intuitive qualities, impressions of, description of and interpretation of the everyday. But this leaves open how we ask about this experience. What questions and approaches should be used? Giorgi (2009, p. 122) argues that ‘What one seeks from a research interview in phenomenological research is as complete a description as possible of the experience that a participant has lived through’. Furthermore,

Asking for a situation is vital since the discovery of the meaning of the phenomenon (later in the data analysis) needs to have been connected to a specific context in which the phenomenon has been experienced (Englander, 2012, p. 13).

The present research benefited from Durham’s experience of ABI both personally and as discussed previously her long engagement with people with ABI over many years. The research questions therefore reflected this prior understanding of ‘context’ as a basis for the development of a research approach and ‘questions’ capable of understanding the experience of ABI among the study sample. They also drew upon the systematic study of literature grounded in a supervisory relationship with Ramcharan for the purposes of gaining a doctoral degree by research.

As with all other humans, our actions as writers and researchers are therefore themselves intentioned. If first-person ontologies are given primacy, it is not only to fill a gap and to achieve paradigm shift. It is also to hear the voice of people with ABI and to ensure our research conduct achieved dignity and respect, and did no harm.

In this respect, it has been argued that ‘only qualitative analysis can accurately capture the complex pattern of an individual life without violating the integrity of life or dehumanizing the individual’ (Kotre, 1984, p. 3).

Renzetti and Lee (1993, p. 6) assert that ‘extreme sensitivity is needed in the conduct of research that intrudes into the private lives or deeply personal experiences of the research participants’. Feminist advocates of qualitative methods have argued that ‘individual women’s understandings, emotions, and actions in the world must be explored in those women’s own terms’ (Jayaratine & Stewart 1991, p. 85). ‘Such methods are consistent with the ways in which research participants are treated and the care with which researchers attempt to represent the lived experience’ (ibid., p. 90). For feminists, this involves being cognisant of issue of power and patriarchy.

The majority of participants in this study—those with ABI and people who care for and support other people with ABI—were ‘vulnerable’, ‘difficult to access’, ‘invisible’ ‘hidden’ and ‘hard to reach’ (Stone, 2005). From previous chapters, it has been demonstrated that this was to be ‘sensitive research’ (Wellings, Branigan, & Mitchell, 2000, p. 256) with vulnerable people (Liamputtong, 2007). Their ‘invisibility’ could have included their marginality, lack of opportunity to voice their concerns, fear of their identity being disrespected, stigma attached to their social conditions, heavy responsibilities and scepticism about being involved in research (Birman, 2005; Fisher & Ragsdale, 2005; Stone, 2005). The present research therefore aimed to provide a time and place for conversations, described by Robertson and Webber (2000) as ‘deep and meaningful conversations about life experiences, many of which have not previously been voiced’ (pp. 531–532) and research with ‘…potential consequences or implications, … directly for the participants…’ (Sieber & Stanley, 1988, p. 49).

Oakley (1981) suggests the ‘goal of finding out about people through interviewing is best achieved when interviewer and interviewee is non-hierarchical and when the interviewer is prepared to invest his or her own personal identity in the relationship’ (p. 41). A rapport and understanding of the individual participants was developed over the period of contact, the phone calls and the interview. Specific encounters were particularly upsetting and are etched in memory for the interviewer Durham, and Ramcharan who had access to the data transcripts. The powerlessness, frustration, perception of being ‘taken advantage of’ or being ‘ripped off’ by ‘the system’ affected some participants profoundly. This was one issue in this study that was underestimated.

Feminist studies also point to experiences of oppression (Mies, 1983: Peter 2000; Fraser and MacDougall 2016) within the research process and the importance of reflexivity or recognition of self in the research process. This is the opposite of Milgram’s (1974) famous study of ‘obedience’ that relied on the abstract authority of the ‘scientist’, which is an example of research design that depends on maximising the hierarchical distance between researcher and research participant. Moreover, in line with arguments by Jayaratine and Stewart (1991), the research topic was selected to have potential to help people with ABI; the Keys Study aimed at specifically determining information that would be most useful and have positive impact; the method was designed to be appropriate to ask questions of vulnerable people; and the answers and data collected would be to assist people with ABI.

The Keys Study was sensitive research into vulnerable people, and to reduce the power differential between researcher and researched, a research approach capable of achieving this was needed. As such, we adopted a narrative research method involving principles of motivational interviewing, which is a directive, client-centred counselling style for eliciting behaviour change by helping clients explore and resolve ambivalence (Rollnick & Miller, 1995). Using this method, the participant was placed in control to speak about what, from a plethora of potential topics, they considered important. The relationship between the interviewer and interviewee was more like a partnership rather than expert/non-expert interaction.

In the Preface to this volume, the ‘Keys to the ABI Cage’ was presented. It will have been noted from Chaps. 2 and 3 how we used Headwork boxes to guide the relationships between researcher and participants during the development of the data collection method. “Keys to the ABI Cage” as presented in the introduction to this volume is the result. However, there is one further set of literature which informs our approach, the qualitative, body-subject, emic or insider’s perspective which is reviewed below.

4.2 ABI from the Qualitative Body-Subject, Emic, Insider’s Perspective

Having explored some phenomenological assumptions, we now explore how a view grounded in experience was created for the Keys Study.

Rees (2011), in his book “Out of Calamity”, depicts people with ABI as whole people with many facets. In his narratives about people with ABI, Rees tells the story of Phillip, a young man whose parents are delighted when they come across notes that he has scribbled: in their eyes this is an indication of improvement. But

his mother’s claims about his improvement has raised a few eyebrows among the more prescriptive and sceptical professionals…(who said) anyway his mother is not objective and doesn’t know what she is talking about (Rees, 2011, p. 60).

From the perspective of the insider, ‘those professional gainsayers, and there are many of them…’ (Rees, p. 64) can impact upon the individual. In considering Joe, another person with ABI, ‘few (professionals) if any gave Joe any hope’ (Rees, p. 79); fortunately Joe received kindness and understanding from the hospital cleaners. ‘Joe’s serious injury, isolation, lack of hope, let alone activity had drained his strength’. These quotes provide an example of how some people with ABI and their family perceive their treatment by professionals; their need to be listened to, their point of view taken into account, even small positive issues to be considered and their need for encouragement and hope.

As explained in Chap. 1, one reason for undertaking this study was conversations with hundreds of people with ABI who have attended Durham’s presentations or workshops, told her that they felt, and still feel powerless. They lacked encouragement and hope. Simon (all names in this volume are pseudonyms) stated: ‘They (the professionals) thought I was stupid but I’m not, I’m just slow.’ Mark remarked: ‘The medical viewpoint is that people with ABI don’t have insight. This is not true…we do have insight…we have to re-assess our own lives’. But the body-object perspective can take away hope and further disempower the person with ABI, who, with ‘King Louis XV1’s gaze’ (or the gaze of the decapitated head surveying the person they once were) may see themselves as no longer an individual, as a ‘retard’, ‘object of pity’ among many other disparaging labels.

The body-object language such as ‘physical problems’ does explain the consequences to the person, who may feel unintelligent and dumb: Jo-Anne said: ‘I can’t walk normal and I fall over. I feel stupid’. Jo-Anne, together with the majority of people with ABI would not have used the word ‘cognition’ before their ABI, so terms such as ‘cognitive impairment’ need ‘translation’ so that people like Jo-Anne can understand how having cognitive impairment can impact on their everyday life. Terms such as ‘behaviour impairments’ or ‘personality dysfunctions’ may not explain that a person with ABI might feel out of control and do crazy things that they would not have done prior to their ABI.

At writing workshops, Peter made the observation: ‘When I get mad I do mad things: I threw my new typewriter in the river because the Keys weren’t in alphabetical order!’ demonstrating, in a humorous way, that later he had insight into what was normal/not normal and the affects of anger and frustration. Max remarked ‘When I was mad I chased an emu’, indicating he also had insight into ‘foolish things’ he could do when he was angry. Phillip said: ‘I need a “cone of protection” like Maxwell Smart, to keep out my anger’, showing he had considered his anger problem and found a ‘socially acceptable’ way to describe it. Martin divulged that ‘I’m not mad. I just pretend to be’—demonstrating he was aware of ‘what’s what’, and ‘who’s who’ but that he could only accomplish his ends through extreme behaviour. These comments support the findings of Egan et al. (2006)’s study, who found that people with ABI are capable of greater insight, reflection and humour than indicated in previous research.

Lack of ‘Choice’, lack of ‘Being in Control’ and lack of ‘Power’ may not feature in lists of impairments, but people with ABI are acutely aware that ABI brings with it loss of choice, loss of power to have a say in what they want to do. Poignant statements such as from Atticus: ‘The moment my stroke hit me in the back paddock I lost my choice’; Adrian, ‘I felt disempowered in rehab. If you stay disempowered they keep their jobs’. These statements about the predicament of powerlessness of people with ABI have been expressed at a number of ABI support meetings.

People with ABI listen to other people with ABI; there is understanding and a bond. Felicity said: ‘It’s helpful to know others have the same experience’; Pip remarked: ‘It’s good to know someone understands’; Ian thought: ‘There’s a lot of wisdom in this room full of people with brain injury, a lot of experiences’; John explained by saying: ‘I can feel what you say mate’; Pru commented: ‘I want to be seen as me, an individual, regardless of any disability’.

The research tool Keys to the ABI Cage demonstrated empathy with the ABI experience.

The body-subject view which would support such voices also fits with the seminal ideas of phenomenology offering ‘an interpretative approach to social reality and the lives experience of human beings’ (Holloway & Wheeler, 2010, p. 3).

Qualitative research comes in many forms, but data has priority; it is initially broadly focused, process orientated, context-bound, and involves getting close to data (Holloway & Wheeler, 2010, p. 10). The focus is on the emic; ‘thick descriptions’ (Geertz, 1973) which are detailed portrayals, interpretations and the uncovering of feeling and meaningful behaviours; the researcher–researched relationship is based on the concept of equality as human beings; the researcher is visible and is the main research ‘tool’.

The use of qualitative research has only recently begun to populate the literature around ABI, but is quickly growing (see, e.g. Sample & Darragh, 1998; Albrecht & Devlieger, 1999; Darragh, Sample & Krieger, 2001; Levack, McPherson, & McNaughton, 2004; Howes, Benton & Edwards, 2004, 2005; Jumisko, Lexell, & Söderberg, 2007; Lorenz, 2010a, b; Uprichard, 2010; and Lloyd, Gatherer & Kalsy, 2006).

4.3 Qualitative Academic Research: The Insider’s Experience from the Outsiders’ Perspective

A formal literature review up to the time of the study in 20112 was undertaken using 12 web search engines. Main terms qualitative studies, narrative, lived experience, quality of life, coping, resilience and brain injury yielded 24 studies many of which revealed blind spots not covered in conventional quantitative approaches. These blind areas contributed to the method of Keys to the ABI Cage and the ‘talk-about’ cards that populated the cage and offered participants focal points for their narrative.

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Feb 4, 2018 | Posted by in NEUROLOGY | Comments Off on The Body-Subject Perspective of ABI—A Literature Review of Qualitative Studies
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