A THEORETICAL OVERVIEW OF CARING FOR SOMEONE WITH A SEVERE BRAIN INJURY: PATHOLOGY OR PRACTICE?
To quote from this work please reference as follows:
Butler, M. (2007) “Care ethics and brain injury”, Doctoral thesis, Otago University. http://www.severe-brain-injury.com/theoretical-overview.htm
In this section the practice of caring is discussed both in general terms and also with specific reference to caring for an adult with brain injury. It provides a critical grounding for the findings of this research about the practice of carers.
In the first section definitions of care given in the disability and the care ethics literature are compared and contrasted in order to begin to expand the concept of care. In the second section the literature about the paradigm of burden for carers is discussed. Most of the literature has focused on the effects of the care on the carer. Generally these effects have been negative and in brain injury there has been some attempt to establish a correlation between specific neurodeficits and types of burden. Not surprisingly, it has been found that cognitive and behavioural deficits are much harder on the carer than physical deficits. When the discussion about care is widened to also include work from philosophy and the ethics of care, the issue of burden becomes one of justice. There are some philosophers who say that care is a more fundamental concern than justice, and others who try to establish theories of justice and equality that take dependence and caring into account. It is not the concern of this thesis to resolve such issues, but note is made of Kittay’s argument that payment for care goes some way towards establishing the basic dignity of care as a practice.
There are precedents in the early care ethics literature for describing care as a practice and this is discussed in the third section. This is extended in the fourth section by reference to the disability literature, which describes the caring career. Descriptions of what carers actually do in the field of brain injury tend to focus on their role in supervising the person with brain injury and this is discussed in the fifth section. Finally, an examination of what is currently considered best current practice in brain injury provides further context for the practice of care.
Definitions of care
In this section definitions of care are explored from different kinds of literature. In the disability literature care is described as the physical and instrumental activities that support the independence of the person with disability. In the care ethics literature care denotes a relationship that is respectful of the “other”, and which can have a transformative capacity for both the carer and the person being cared for. The structure of care can also involve an asymmetrical relationship, which often means that there is an element of sacrifice (either good or bad) underpinning it.
In the disability literature the carer is seen as someone who performs tasks for other people that the care-recipient is unable to perform independently (Twigg, 1994). Therefore, if the person is unable to clothe him or herself, a carer will perform the task for them. Schofield (1998), in her survey of 976 families from Victoria, Australia, realised that carer tasks were more than simply physical and she divided the carer role into two categories: physical tasks and instrumental tasks. Physical tasks include examples such as toileting, getting into/out of bed and dressing. Instrumental tasks include examples such as money management, arranging transportation and recipient-related correspondence. However, there has been much more literature produced about physical tasks in the disability literature, possibly because this is the area where professionals have traditionally been most involved in training (Brett, 2002).
The perspective outlined in the previous paragraph is carried forward in the work of at least one care ethicist. Tronto (1993) defined care as an activity that includes “everything that we do to maintain, continue and repair our ‘world’ so that we can live in it as well as possible” (p. 103). In this definition care can be for objects and the environment as well as for other persons. This definition of care is very similar to the way that Arendt (1958) describes Labour and it does not allow that care might be extended into the realms of either Work or Action. Arendt does not describe care specifically, but it is likely that she would concur with Tronto’s definition.
A more nuanced appreciation of the work of care comes through other literature on care ethics. Bubeck (1995) defined care as, “meeting of the needs of one person by another person”, rather than simply doing things for them, “where the need is of such a nature that it cannot possibly be met by the person in need herself” (p.6). It was a mathematician and care ethicist, Noddings (1984) who said “I can only describe myself as caring if I have established a caring relationship with another” (p.15). This focus on a caring relationship is something that goes through many other descriptions of caring. For instance, Thayer-Bacon (2000) speaks of caring as a moral orientation that has a particular, contextual focus and is not generalizable. People do not have to like or love each other in order to care, but they do need to develop the ability to be receptive. This does not mean that they agree, but it does mean that the carer is open to hearing the voice of the “other” as completely and fairly as possible. It means respecting others as separate and autonomous and worthy of care. It is an attitude that gives value to others by giving them serious and close attention.
Held (2006) described the way that care has the capacity to shape new persons with ever more advanced understanding of culture and society and morality and ever more advanced abilities to live well and cooperatively with others. This transformative capacity of care was recognized by May (1994) in his work with severe disability. He distinguished between accepting and transforming love and said that accepting love accepts the person for who they are, without asking anything more; transforming love moves the person on because it wishes for their well-being, and not simply for their being. Accepting love means that the carer makes a determined commitment to accept the person for who they are and to hold them safe. Without transformative love, however, these efforts can slide towards indulgence and finally neglect.
The work of care can transform not only the person caring but also the person who is doing the caring. Milton Mayeroff (1971) described caring as a means to individual growth and self-actualization. According to Mayeroff, I find my place in the world by having my life ordered around caring. In caring for others I find and create myself and living a life centred on caring is living the meaning of my life. There are layers of complexity in this process and Helin and Lindstrom (2003), writing from a nursing ethics perspective, drew on Christian mystic traditions to argue that sacrifice is part of the structure of love, just as responsibility and engagement are also part of that structure. They acknowledge the contradictions inherent in the concept of sacrifice, since it can be associated with self-denial (or abandonment and giving up) in a negative sense as well as in the positive sense of devotion, surrender and dedication. Sacrifice in this mystic sense allows the asymmetry of the relationship between the carer and the one being cared for to become a sacred space of service.
The burden paradigm
In this section the literature that pathologises the sacrifice inherent in the structure of care as a “burden” is explored through the literature on brain injury and disability. Symptoms of the stress associated with care have been described extensively during the 1990s and beyond. Increasingly there is an attempt to distinguish between specific neurodeficits, relationship configurations, coping styles of carers, income status and types of social support that can alleviate the stress. It is clear that brain injury affects the whole family and not just the individual. The literature on care ethics does not directly discuss the question of burden, but it articulates a conflict between the values of justice and those of care. It is a matter of justice when some people are burdened beyond endurance by the care that they give to another. Finally, literature on coping is included in this section because coping is still situated within the paradigm of burden. However, the literature about coping forms a bridge to the practice of care, because the satisfaction of carers is clearly related to their capacity to bring about good outcomes for the person they are caring for.
The idea of burden as a theme that unified all carers of people with disability was developed in the early 1990s (Kahana et al., 1990) and it has influenced much of the literature that followed. Johnson and McCown (1997) found that there was a conflict inherent in caregiving, because it involved a combination of love and responsibility on the one hand and stress and dread on the other. The experience of these opposing emotional states resulted in anxiety, depression and demoralization, which essentially describe the experience of burden. In the brain injury literature Katz (2005) used “burden” to refer to a subjective experience, which was defined as the response to any event or situation that can increase frustration, including lack of support or being unable to reach a significant goal. This use of the term is consistent with the definition of burden appearing in earlier studies of caregiver burden (Allen, Linn, Gutierrez, & Willer, 1994; Livingstone & Brooks, 1988). Burden following brain injury is defined by Allen (1994) as a state of affairs that is difficult to deal with physically and emotionally. In this section I explore the theme of burden that is caused by caring for someone with a brain injury.
The most cogent description of how the pathology of brain injury becomes entwined with the pathology of burden is given by Johansen (2002), the mother of a young man with brain injury. She describes here the phenomenology of burden experience in the early months following a brain injury:
Erik's loss of self through injury, unconsciousness, and confusion contributed to Robert's, Sonia's, and my loss of soul. Our sense of being integrated body-mind-spirits participating in a benign and generative universe was split asunder with Erik's accident. Sometimes in shock we felt like bodies whose minds had walked away; at other times our bodies ached without consolation from the spirit; occasionally, in fatigue and sympathetic identification with Erik, we experienced the diminishment of our cognitive functions (p.179).
A recent review (Wayne et al., 2006) of the brain injury literature between 1998 and 2004 indicated that a significant number of carers experience adverse effects, including stress (Kolakowsky, 1999), depression (Boyle & Haines, 2002), anxiety (Marsh, 2002) poorer communication (Kolakowsky, 1999) and decreased time and energy for social and recreational activities (Boyle et al., 2002). The evidence suggests that depression is often enduring (Gillen, Tenne, & Affleck, 1998) and that it is related to coping strategies (Knight, Devereux, & Godfrey, 1998). One of the most significant sources of long-term distress for caregivers and of poor family functioning is the emotional and behavioural change in the individual with brain injury (Knight et al., 1998; Machamer, 2002; Marsh, 2002). Distress is also associated with communicative and social problems in the person with brain injury (Anderson, Parmenter, & Mok, 2002). The issue is complicated by suggestions that pre-injury family functioning might not always be ideal (Sander, Sherer, Malec, High, Nakase Thompson, Moessner et al., 2003).
One study showed that although primary caregivers, wives in particular, were at greatest risk of poor psychosocial outcomes, secondary and tertiary caregivers also experience elevated distress (Perlesz, 2000). In men this was more likely to be reported as anger or fatigue than depression or anxiety. Predictors of caregiver burden include the proportion of family needs that is actually met (Nabors, 2002), the individual's physical impairments, emotional and behavioural functioning and social isolation (Marsh, 2002). In a large sample (n=180) injury severity was found to be significantly associated with caregiver burden (Machamer, 2002).
Research completed since Wayne’s (2006) review includes a study of 72 families by Wells, Dywan and Dumas (2005). This study examined which injury-related behavioural sequelae and/or life circumstances were most predictive of well-being in family members caring for survivors of traumatic brain injury. They found that carers coped with their anxiety and depression by relying on family supports, whereas they dealt with feelings of anger and irritability by changing their own expectations and attitudes. The study indicated that carers responded to impaired impulse control on the part of the person with brain injury with anger and irritability. However, the carers were most affected by the lack of empathy from the injured person.
In another study of 44 wives of men with brain injury (Katz, 2005) it was found that time since injury did not always correlate with increased levels of burden. This was in contrast to previous studies that uncovered an increase in perceived burden over time (Brooks, Campsie, & Synington, 1986; Koskinen, 1998). The explanation given for this discrepancy was that perceived burden increases significantly in the first few years following the brain injury and, thereafter, remains more or less constant. This study included men who had their injury many years previously and it may be that there is a plateau effect in the perception of burden after about eight years. Katz suggested from these findings that while the objective level of burden remains constant after a certain point, some carers have a lower level of coping flexibility.
There is some debate about what kind of relationship configuration between the carer and the person with brain injury is most stressful. Sometimes it is argued that the similarities of the burden shared by spouse and parents of people with brain injury are greater than the differences (Allen et al., 1994). On the other hand it has been suggested that parents may cope better than spouses because parents can share the carer role and support each other, whereas spouses are usually alone (McCluskey, 2003; Oddy, 1985). An Australian study also found that between 30% and 50% of secondary and tertiary family members (including fathers, siblings and adult children) were also distressed, angry or fatigued as a consequence of their association with a relative with brain injury (Perlesz, 2000). This is how the sister of Erik, a young man with brain injury, described the experience:
Erik's accident resides in my very composition. Even fifteen years later, I confront emotions rooted in that early experience. The accident as omen carries both portent and promise. It holds simultaneously both my darkest memories and my most solid foundation. It contains both darkness and light. The day I returned to school after the accident I had a strong emotion that has stuck with me ever since. I felt that no one in the world could ever truly appreciate what I was experiencing. I grew to understand that this tragedy was mine; I owned it in a way no one else could. My appreciation of life and the darkness and complexity it held became vitally important. In fact, I became deeply committed to a very solemn and undying optimism that formed the foundation of my identity (Johansen, 2002:204).
Partners who were carers were more likely to report health problems, distress and changes in role than were parents who were carers (Leatham, 1996). Similarly, a study in South Africa of the effects of caring for a partner with a brain injury found that the injured person’s altered communication patterns affected interpersonal relationships and quality of life extensively and the carers had decreased income due to the low incidence of return to work (Wedcliffe & Ross, 2001). Spouse carers also reported changes in family relationships, particularly between the injured person and their children, as well as deterioration in marital relationships. Most carers reported feeling tied down due to the dependence of the injured person, and loneliness predominated as a social consequence despite the support of pre-injury friendships. Spouse carers experienced additional stressors to those of parents, such as caring for the person with brain injury and young children together in the same house (Oddy, 1985). They typically had to manage additional home maintenance, household, financial and work responsibilities which would previously have been shared with their partner (Leatham, 1996).
Wood and Yurdakul (1997) found that 49% of the couples in their sample separated or divorced within 5-8 years after the onset of brain injury, although these figures are debated in a recent review of the literature by McCluskey (2003). Larger studies have placed the divorce figures much lower, at around 20% (Brown & Vandergoot, 1998; Steadman-Pare, Colantonio, Ratcliff, Chase, & Vernich, 2001), which is closer to the general rate for the population. Another finding (Wood et al., 1997) was that separation was much more common for people with brain injury than divorce. A small proportion of partners (6%) had separated from the person with brain injury, yet did not intend to pursue a divorce. Instead, they planned to continue in their role as primary carer, so long as this did not mean cohabiting with the injured person (Wood et al., 1997). Thus, separation was their way of managing the stressful carer role.
The kinds of problems that male and female spouses have are somewhat different (Willer, Allen, Liss, & Zicht, 1991). Husbands identify the main problems as being loss of autonomy (for their wives), mood swings, insecurities and over-protectiveness and a reluctance to leave the home. Wives on the other hand identify the problems as being due to change in their husbands’ personality, changes in cognitive abilities including memory loss, lack of insight and acceptance of disability, loss of emotional support, sharing and companionship and feeling unable to meet the children’s needs.
Research touches on how the relationship of the carer to the person with brain injury can affect their way of coping (Wood et al., 1997). Husbands described: suppressing feeling; not attributing all family problems to the brain injury; mutually defining new roles and responsibilities; encouraging their wives to participate in a support group; and maintaining a sense of humor. The wives on the other hand described: developing a realistic but optimistic outlook; becoming assertive with the disabled husband, health care providers, in-laws and insurance representatives; allowing husband to be independent; taking time for one’s self and going on family outings; and participation in support groups. Some of these coping mechanisms are pro-active in a way suggestive of practice, for example mutually defining new roles and assertiveness with different parties.
Disability usually involves additional costs for items and services such as transport, heating, laundry, clothing, and special diets. For instance, between 1992 and 1996, the Victorian Health Promotion Foundation funded a survey of 26,000 households about family caregiving (Schofield 1998). Almost 1,000 cases were interviewed intensively. Approximately 50% of the carers reported adverse financial effects as a result of caregiving, with more than half of those having difficulty in meeting everyday costs. Even carers who reported no substantial financial impact often reported extra costs (26%) and loss of income. However, the studies about the effects of financial hardship on the well-being of carers following traumatic brain injury have been inconsistent in their findings (Ergh, Rapport, Coleman, & Hanks, 2002; Nabors, 2002). In a study of 74 families Wells (2005) found that income change (rather than current income) was related to caregiver well-being. This downward mobility tended to undermine the caregiver's sense of self-reliance, which normally serves as a buffer against externalizing symptoms (irritability, hostility). Therefore, it may be that change in income status, rather than absolute income, has the strongest association with a sense of burden for the carer.
In summary, there is a body of literature that has identified an enormous burden that is associated with caring for the person with brain injury. This burden does not become easier over time, in fact it is frequently the case that the perception of burden increases rather than diminishes over time. The literature is becoming increasingly specific about the variables related to brain injury that are most closely related to burden and the kinds of relationships that are most likely to feel a sense of burden. It is clear that social support has been found to be a powerful mediator of caregiver distress (Ergh et al., 2002).
The idea of burden is not such a major concern in the care ethics literature. For instance, in Held’s (2006) recent work on care ethics, burden does not get mentioned in the index. She does, however, acknowledge that burden will be felt when people are trying to care in situations where the messages from the “community” promote the values of egoism, competition, and the victory of the fittest. The question of burden in care ethics is often framed as one of a conflict between the values of justice and those of care. Clearly there are issues of justice where some people are burdened beyond endurance by the care that they give to another. These issues are explored through the works of Gilligan (1982) and Kittay (1999).
Gilligan (1982) was a psychologist who focused on moral development and found that in terms of ethics, the females she studied developed morality organized around notions of responsibility and care, not rules and rights. The importance of her work was in suggesting that there could be an alternative to the rights and justice perspective put forward by Kohlberg (1981/1984). The care perspective that she put forward pays attention to people’s needs to show how actual relations between people can be maintained or repaired and it values narrative and sensitivity to context in arriving at moral judgments. The justice perspective, on the other hand, emphasizes universal moral principles and how these can be applied to particular cases and it values rational argument (Held, 2006 p. 28). Gilligan thought that it was necessary to have both a care and a justice perspective, but exactly how this can be achieved in practice is one of the most fundamental questions in care ethics.
Eva Feder Kittay (1999) is a philosopher who also has a severely disabled daughter named Sesha. This places her in a unique position to attempt to bring together the traditional concerns of ethics and justice with those of care. She looked at the problems faced by carers in achieving equality where dependency is not acknowledged. Using the example of Sesha, she argued against Rawls’ (1971) thesis that dependency can be accommodated over a whole lifetime through reciprocity. Instead she formulated a theory of equality that took dependence into account, based on the idea that "we are all-equally-some mother's child" (p.25). Kittay expanded the concept of reciprocity using the term “doulia”:
“Doula” originally meant slave or servant in Greek. It is intriguing to redirect the concept and signify instead a caregiver who cares for those who cares for others … extending the notion of the service performed by the doula, let us use the term doulia for an arrangement by which service is passed on so that those who become needy by virtue of tending to those in need can be cared for as well. Doulia is part of an ethic that is captured in the colloquial phrase: "what goes around, comes around" (Kittay, 1999 p. 109).
Kittay’s view of an ideal society consisting of nested dependencies is based on a series of primary goods which include the understanding that: we will be cared for if we become dependent; that we will get the support we require if we have to take on the work of caring for a dependent; and the assurance that if we become dependent, someone will take on the job of caring for those who are dependent on us (p. 102). She also recommended that cash payment should be made to the household for purposes of care, which could be used either by members of the household for their own purposes, or to hire outside help. Payment for care gives it dignity, even when, as will often happen, a member or members of the household prefer to care for an elderly or disabled or young relative themselves.
The ethics that arise from the relational aspect of care are also discussed in a much wider field. For instance, Samson (1999), writing about the relationship between the physician and the patient, discussed the question of the well-being of the family in relation to that of a sick person. He described the fact that a sick man who is placed in hospital becomes a double burden for society. This is because the assistance that he is given relates only to the sick person and his family is left exposed to poverty. However, if the sick person is cared for in the community any financial assistance given to the sick man will be of advantage to the family: "someone will have to eat the meat from which his broth is made; and in heating his tisane, it costs not more to warm his children as well' (Foucault, 1973 p.145). Foucault was making the point that ‘the system’ finds this problematical, since those other than the entitled person are also benefiting. However, it highlights the point that it is necessary to think of the whole family when dealing with a sick person, because this brings about a situation of greater justice.
The concern with caring for others is often associated, in a negative way, with women’s traditional role as wife, mother and family nurturer. Feminists have highlighted aspects of the caring role that have traditionally disadvantaged women and put them in a position where they suffered injustice. They warn against associating care too strongly with women, since the concept of care has been used oppressively against women in the past. For instance, Hoagland (1989) warns that "caring cannot be insular and it cannot ignore the political reality, material conditions and social structures of the world” (p.113). The concern here is about oppressive structures in society, rather than about the burden imposed by particular aspects of the work.
Coping can be defined as being “the things people do (acting or thinking) to increase a sense of well-being in their lives and to avoid being harmed by (potentially) stressful events” (Turnbull, Patterson, Behr, Murphy, Marquis, & Blue-Banning, 1993:105). There exists some literature about the way that families of people with brain injury can cope well despite their initial traumatic experience (Perlesz, 2000; Ponsford, 2004). The literature on coping still addresses the paradigm of burden, since the focus is on the effects of care on the caring. However, in talking about coping strategies the literature begins to move beyond the burden paradigm and closer to a description of the practice of carers.
Lundh (2003) described a major Swedish study of all types of carers, which found that they used three main strategies: problem solving, cognitive strategies (seeing things differently) and stress reduction. Problem solving approaches were very much about standing on their own two feet and taking responsibility for what was happening. They relied on themselves and their own good sense to make sure that they stayed one step ahead of any problems before they occurred. Carers seemed to use a problem solving approach until such time as the problem proved insurmountable. At this stage they shifted to a cognitive stance. Cognitive strategies included acceptance and stoicism, humor, non-blame culture, and self-belief. The intractability of what they were dealing with was indicated by the fact that in the end carers were more likely to use a cognitive approach than to use a problem solving approach. Other studies found that some carers tended to develop persistence and strong advocacy skills. Weiss (2002) found that individuals who expressed such “hardy attitudes” were more likely to receive such support services as were available.
Lundh (2003) described the kinds of satisfaction that it is possible to get from caregiving. These effectively describe outcomes of the practice of care, such as seeing that the person being cared for is clean, comfortable and well turned out; maintaining their dignity, helping them overcome difficulties and keeping them happy; keeping them out of an institution and knowing that the person is getting the best care possible. The focus of Lundh’s work is still on the ways that care affects the carer, rather than examining how they brought about these outcomes. However, the things described are all obvious indicators of good practice by people who are fully engaged in giving care.
The practice of care
In this section the ethics of care is framed in a more positive way to reflect the ethics underpinning the practice of care. In describing the work of care as a practice Ruddick (1989) opens up the possibility of examining it in terms of particular goals and the virtues required to meet these goals. The kind of understanding that underpins this practice can be described as phronesis.
The practice of care is sometimes described as a feminine ethic, as opposed to a feminist ethic (Alcoff & Kittay, 2007). The distinction between a feminine and a feminist ethic is not necessarily useful. Scheper-Hughes (1992) notes that the work of care is ordinarily, but not necessarily, done by women by using a bracketing technique to describe it as “(M)other love”. Ruddick (1989) does the same thing by distinguishing between birthgiving and mothering, noting that men also engage in the work of mothering. Mothering is given here as the prototype of caring practice, but there is no necessary association between mothering and women.
Ruddick's (1989) anthropological and philosophical work on maternal practice gives one of the most thorough descriptions of what is involved in a particular kind of care. In fact, Held (2006) locates the beginning of the ethics of care in an early essay on this subject by Ruddick (1980). Each different practice of care will have some things in common, but will also have a particular focus of its own. In the present research an exploration of the practice of caring for an adult with brain injury is used to expand the dialogue about caring practice in general. Held (2006) distinguishes between different kinds of care:
Taking care of a toddler so that he does not hurt himself yet is not unduly fearful is not much like patching up mistrust between colleagues and enabling them to work together. Dressing a wound so that it will not become infected is not much like putting up curtains to make a room attractive and private. Neither are much like arranging for food aid to be delivered to families who need it half a world away. Yet all care involves attentiveness, sensitivity, and responding to needs (p.39).
Practices are collective human activities distinguished by the aims that identify them and by the consequent demands made on practitioners committed to those aims (Ruddick, 1989). The aims or goals that define a practice are so central that in the absence of the goal you would not have that practice. This intrinsic dependency is expressed by saying that to engage in a practice means to be committed to meeting its demands. People more or less consciously create a practice as they simultaneously pursue certain goals and make sense of their pursuit. Understanding shapes the end even as the practical pursuit of the end shapes the understanding.
The nature of virtue varies with the practice, where virtue is “an acquired human quality the possession and exercise of which tends to enable us to achieve those goods which are internal to practices and the lack of which effectively prevents us from achieving any such goods” (MacIntyre, 1984, p.207). MacIntyre’s appeal to virtues is also extended to include the way that these traits help the individual achieve a certain form in their lives. Virtues also connect them with the traditions within which the practice and the person are embedded.
MacIntyre’s insistence on the connection between virtues and practice directs attention to the need being met. His work also provides support for the work done by Ruddick in finding the virtues that are specific to an individual practice. Ruddick provided what is still the most thorough description of the virtues that underpin the practice of motherhood. The demands of maternal practice are those requirements that are imposed on anyone doing maternal work. This work involves a commitment to preserving the life of the child, fostering their growth and training them to be socially acceptable. The end, or telos, of maternal practice is therefore seen in the preservation, growth, and social acceptability of the child. For example, if a child leans out of a high-rise window to drop a balloon full of water on a passerby, she must be hauled in from the window (preservation) and taught not to endanger innocent people (training) and the method used must not endanger her self-respect or confidence (nurturance and fostering growth) (Ruddick, 1989 p. 23).
Ruddick (1989) described the virtues that underpin maternal practice: preservation of the child requires attentive love, humility and cheerfulness; fostering growth requires judgment; and training for social integration requires the capacity to welcome change. These virtues are described in some detail below and are extended by drawing on the maternal practice of one mother, Johansen (2002), whose son Erik had a severe brain injury.
The concept of attentive love designates a cognitive capacity - attention - and a virtue - love. In the words of Murdoch (1971), attentive love constructs a real person, but one whose reality is:
…revealed only to the patient eye of love …The task of attention goes on all the time and at apparently empty and everyday moments we are 'looking,' making those little peering efforts of imagination which have such important cumulative results” (p.40).
In the following excerpt Johansen talked about how she brought attentive love to the situation faced by Erik following his brain injury:
In a world breaking apart literally and psychically, our young daughter's diary, our scribbled journals and our memories screamed our longing for the return of a unified - though at present uncommunicative - brother and son. But beneath this hope, often hidden in the skirts of grief, lay hints of our separate fragmented efforts simply to pay attention and to create some kind of connection with our "absent" son and brother that might sustain his life narrative (Johansen, 2002:54).
Later on Johansen began to associate the capacity to pay attention with a narrative approach to the unfolding story of her son. This is similar to Murdoch’s ideas of how attentive love creates a real person, but one who is only revealed to “the patient eye of love”.
All who related to Erik were shaping a bridge-like narrative that we hoped might carry his consciousness across the rift between a dimly or only partially remembered past and an altered present. Though I could not explain neurologically why we were doing what we did at the time, I had a gut feeling that all our interactions with Erik and explanations about or descriptions of those interactions flowed like a river to restore some coherence to his life. In the absence of Erik's ability to tell his own story, we learned experientially what Antonio Damasio later described from his neurological research, that "the images in the consciousness narrative flow like shadows along the images of the object for which they are providing an unwitting, unsolicited comment ... The story ... is not told by some clever homunculus. Nor is the story really told by you as a self because the core you is only born as the story is told, within the story itself” (Johansen, 2002 p.130)
Humility is important for carers because it involves continuing to pay attention to the real person, who is not there to be controlled into compliance. It also pays attention to the place of that person in the real world, because being humble means that one has a profound sense of the limits of one’s actions, in the light of the unpredictability of the consequences of one’s works (Ruddick, 1989, p 72). In Murdoch’s words:
At its best, humility is a selfless respect for reality and one of the most difficult and central of the virtues…every ‘natural thing’, including one’s own mind, is subject to chance…One might say that chance is a subdivision of death…we cannot dominate the world (1971, p.95 and 99).
Welcoming change is the final virtue cited by Ruddick as essential to maternal practice. Even while holding the person close, the nurturing carer has to create a welcoming attitude to change. Whatever has been learned yesterday does not necessarily apply to the next situation. There are similarities between the virtue of welcoming change and that of “answerability”, which was used by Johansen to describe the way that they went forward into a life with Erik. Johansen (2002) defined answerability as:
…each person's obligation first to imagine what another is going through and then to answer, with his or her own life, for what he or she has experienced, so that what has been witnessed and understood will not remain ineffectual” (p.195).
She described the process of answerability as analogous to a second birth both for Erik, who had lost his former sense of self through traumatic brain injury, and also for herself. She said she had to learn to be answerable with her own life to the conditions in his life. By himself, Erik could not initially find beginnings in endings, and he could not become answerable to his experience by himself. She found that the knowledge of himself as a unified and dynamic person was a capacity that was acquired only through relationship. In this excerpt she brings together the need of the person being cared for and the proper response of the carer:
The space that traumatic brain injury opened for us was the hidden dimension of our true condition - our vulnerability as human beings and the utterly relational character of selfhood. We entered this space by force, not by choice, with Erik's temporary eviction from his self house and from his culture. In this space of anxious waiting and intensive labour, "costing not less than everything" we previously thought we knew and understood, I learned that second births are necessary not only for those who lose a former sense of self through traumatic brain injury. Choosing to be answerable with one's own life "for everyone else and everything" also calls for a second birth, a radical turn toward those conditions or characteristics in ourselves and others that are hidden from view. By themselves, those afflicted with brain injuries initially cannot find beginnings in endings nor generally see their own lives as creative works. And they, like other people, cannot alone become answerable to their experience. To know ourselves as unified, and dynamic, subjects and objects is a capacity acquired through relationship…By assisting in the tedious sorting of bits and scraps of a former self, by patiently helping to lay the fragments out on bare boards, by carefully witnessing and supporting the arrangement of old pieces into a new narrative, the uninjured and the injured together can prepare for the second birth into the house of relational being (Johansen, 2002 p.80).
The virtues of attentive love and the capacity to welcome change are similar to the virtues of character described by Aristotle. However, in order to facilitate growth Ruddick suggests that what is needed is judgment and it happens through a teaching and learning process, which is eventually extended into the real world. In order to understand what might be meant by judgment I turn to phronesis, which is one of Aristotle’s intellectual virtues.
Aristotle (1985) understood knowledge to be made of three parts: episteme, knowing something about something, which is attained through intellectual activities, through reflecting, abstracting, drawing conclusions; techne, being able to do something, which is reached by creating or making something that becomes functional, useful and aesthetic; and phronesis, being able to take action in a prudent and wise manner, which is achieved through human relationships and the practical training of being with other people. The three forms of knowledge are each other's prerequisites and any one of them alone is not self-standing. Phronesis however is the best description of what Ruddick calls judgment and it is a critical element in the real practice of any kind of care. Neither theoretical knowledge nor hands-on skills are enough unless practical wisdom and prudence have been developed. Phronesis is guided by a consideration of the overall aim of the practice of the carer in the context of the particular circumstances in which they find themselves.
The ability to act prudently and wisely presumes theoretical knowledge about brain injury, as well as a series of hands-on skills in managing behaviour and cognitive deficits. For example, carers must be able to manage behaviour in subtle ways that provide support to the person they are managing. People with brain injury described as behaviourally out of control begin to “settle down” and “behave” more appropriately if others in their environment can anticipate their neuropsychological disturbances and offer adequate structure and support. If removed from a supportive environment, the behaviour of the person with brain injury often deteriorates (Prigatano, 1999). Phronesis therefore is demonstrated through the overall practice of care and it is underpinned by the kinds of understanding described as techne and episteme.
The caring career
The work of Aneshensel, Pearly, Mullan et al (1995), writing in the disability studies literature, used the metaphor of a “caring career” to conceptualize the transitions and role changes that carers experience over time. They identified three broad phases to such a career, which were: preparation for, and acquisition of, the caring role; enactment of care giving; and finally, disengagement from care giving. This concept of the “caring career” is an important preface to the idea that carers actually sustain a practice and are not simply burdened at all times. It is also important because it provides a view of care over time and in this way suggests that there is some degree of choice at stake. The stages of the caring career are used to frame the following discussion about caring. Acquisition of the caring role is always an ethical decision and following brain injury it can involve a very conscious decision to “hold” the person. This can initially be accompanied by a sense of burden as the carer grapples with some of the conflicts that arise from the context of the care. Eventually there is an increasing level of confidence in the capacity of the carer to engage in the task of caring. Disengagement from the caring role can be either a negative process of abandonment or a positive process of supporting autonomy.
Acquisition of the caring role
The decision to care has been likened to that which is made when someone comes upon a drowning man: “If I jump in I am a hero, if I stay agonizing on the shore I am a coward. Either way, I cannot remain what I was before, an ordinary person” (Featherstone, 1980). The decision to care can seem over-determined from the outset, but in fact it always involves a moral decision-making process. The decision to care is not automatic following brain injury, or any other disability (World Health Organization, 2002b).
A traumatic brain injury happens in an instant and it imposes upon carers an experience that corresponds structurally to those great turning points in traditional societies that transported people from one stage of life to another. There are various models for what happens when a carer is faced with the task of beginning to care. May (1994), in his discussion of the arrival of a disabled child into a family, suggests that the decision to care involves three elements: a break with the past for all those immediately associated with the changed person; a turbulent period of transition; and finally, entry into a new life and estate.
Another model, which addresses the effect of integrating the person with brain injury back into the family is patterned after stage models of reaction to death or loss of a loved one (Johnson, 1997). These stages, fashioned after Kubler-Ross's (1969) classic work on the emotional phases associated with dying, include denial, anger, bargaining, depression and acceptance. Following brain injury, the task of family members lies not in coping with a well-defined loss (such as death), but in continually adjusting to personality, behaviour and cognitive changes within an individual. Therefore, it may be questioned whether families ever really achieve a finite level of acceptance of the changes caused by brain injury.
Caring is always an ethical choice in the sense that it is based on a cultural rather than a natural imperative. This is even the case in motherhood, which is normally considered the most over-determined care situation. Scheper-Hughes (1992), in her important anthropological work with mothers in conditions of extreme poverty in northeast Brazil, demonstrated how the pragmatics of motherhood mean that women can make decisions to allow some of their weaker children to die, in order to allow others to survive. One way of managing this is through slowness in attributing human characteristics (such as consciousness, will, intentionality, self awareness, capacity for suffering, and memory) to the infant. The women in the impoverished Alto community coach each other to “let go” because this is necessary for them to continue to carry on.
This cultural capacity to “let go” is very different to the metaphysical attitude of “holding”, which Ruddick (1989) suggests is the basic stance of maternal thinking. The attitude of “holding” a young adult with severe brain injury was demonstrated in the relationship between Johansen and her son Erik. She described the strength and the motivation behind their decision to continue to care in the early days after the brain injury:
Having come of age during the Civil Rights movement and the non violent protests against the war in Vietnam, I gradually identified a vague similarity between the conviction that led people into the streets on behalf of justice and peace of people they did not know and our efforts to remain firmly but unobtrusively present with our injured son in a place where we were not welcome (p.57)… We defied the repeated invitations to leave his bedside and to get on with our own lives and the accusations of medical professionals and social workers alike that we were unable to come to terms with the reality and consequences of the automobile crash. Instead, the more closely we watched and related to Erik, even without his apparent responsiveness, the more we became convinced that one does not become a self the first time - or a second time – alone (p.77)…To let go of this basic desire for full recovery from traumatic brain injury seems tantamount to abandoning one's loved one, so most families and the injured themselves, when they can, cling to it desperately… (Johansen, 2002 p.186).
Family carers are usually not prepared for their role, particularly those who become carers suddenly and unexpectedly. This situation is typified in the event of a stroke or brain injury, which represents a paradigm case highlighting the tensions that arise when lives are interrupted by entirely unanticipated health care crises. Brereton and Nolan (2003) did a study of such a group and found that there were four main themes for these new carers. First of all they just wanted to know what it was all about. They knew nothing about the condition or the prognosis and this was a time of basic fact gathering. During the first stage professionals were the experts and carers willingly deferred to them. It was not long before issues of confidence and trust began to arise as these basic elements began to be eroded. They wondered whether professionals really had the skills to help them. After a while they basically realized that they would have to go it alone. They were not able to get the help that they wanted from professionals and they directed their attention to a “do it yourself” approach through books, family and friends. Finally, they began to ask questions about their own needs in relation to the caring task that they had undertaken.
Enactment of the caring role
There is some suggestion in the literature that the sense of burden may peak at some stage between five and eight years after the injury. After this there is a plateau in perceived burden for carers, with the exception of those who have low levels of coping flexibility (Katz, 2005). My review of the literature would suggest that many of the studies about burden are done in the early years post-injury (Marsh, 1998; Marsh, 2002). Therefore, it may be that the literature about burden actually relates to a period when the carer is learning the tools of the trade. In studies comparing carers across time there is a sense that mature carers (i.e. those who have cared for about ten years) say that they feel good about their capacity to provide care (Wells et al., 2005). This would coincide with Aneshensel’s (1995) “enactment of the caring role” and, on average, the carers in this study had been caring for approximately ten years.
Learning any practice involves some serious adjustment on the part of the learner, and in literature about the education of professionals this is all seen as part of the socializing process. For instance, Luhrmann (2000) in her classic anthropological study of psychiatry was able to show how the divisions within the discipline were directly related to an intense struggle on the part of the students. She gave a graphic illustration of the kind of “burden” imposed on the students by their attempt to come to grips with the practice. The strength of her work however was in placing this burden within the context of the actual practice. Students had a particular kind of struggle because of conflicts within the profession and society about our understanding of the mind. It may be possible to draw some analogies between the conflicts inherent in professional practice and the kinds of conflicts inherent in caring practice.
Disengagement from the caring role
Within the overall process of a caring career there are times when the carer disengages at different levels. This may have either positive or negative aspects. Where the carer resists aspects of the caring role, such as refusing to assist with hygiene, there can be the suggestion of abuse or neglect (Winch 2006, p.13). This is a negative way of “letting go”, but there are also positive ways of letting go when the autonomy of the person being cared for becomes a priority. This was illustrated by Ruddick’s analysis, where she showed that mothers encourage the growth of their children and also train them for social acceptance. Obviously the most positive way of disengaging is when the person being cared for no longer needs it. This is the normal way of exiting the caring career for a parent, but the exits are no longer so evident when someone has a severe disability. Typically, caring for a child involves long-term goals that are built around the child’s development. However, for the person with brain injury there are more uncertainties about the long-term goals. Johansen described the difficulty of letting go even when her son Erik had reached what seemed like the plausible milestone of leaving for college. She saw it as a struggle between control and surrender:
Through every stage and change this struggle between control and surrender persisted. It continued internally for us as parents even when Erik left for college ... Because we could foresee potential problems, we were inclined to protect against them or ward them off ... Over the years I came to understand that the struggle between control and surrender is fundamentally a spiritual contest contrived by the ego to test its own limits and to extend its influence over the universe and others in it. The urge to control is always driven by the controller’s perceptions, preferences, or will and is aimed at making other people or situations conform to the controller's ideas or values. When one confronts the random or the uncontrollable in life one must either crumble before it or relinquish (Johansen, 2002 p.186).
It is possible, even in severe brain injury, to begin to find some kind of closure. However, this can seem impossible for long periods at a time. Schofield (1998) discussed the way that the open-ended nature of care provides little possibility of closure for many carers. It is one of the reasons why caring for someone with a disability is perceived as burdensome.
The practice of caring for an adult with brain injury
This section reviews the literature about caring specifically for an adult with brain injury. It is recognised that supervision is an important component of this kind of care and that it can be onerous for the carer. However, supervision is a crude way of describing the subtlety of interventions required and there is some qualitative research that introduces a more nuanced perspective. Understandably, in an area as complex as this, there is a strong need for training expressed by both carers and rehabilitation staff.
In brain injury it is recognised that supervision is usually more significant than performing physical tasks for the person. Hart et al (2003) defined supervision as “the continuous or intermittent presence of another person to provide physical care, instructions for or set-up of daily living tasks, problem solving in case of emergency, or some combination of these” (p.223). Supervision is both necessary and ongoing after severe brain injury.
Hawkins, Lewis and Mederios (1996) found that cognitive function ratings, rather than any other variable, at three months post-injury predicted degree of supervision at one year. Similarly, Wallace (1998) reported that changes in cognition accounted for significant variance in caregiver lifestyle change. In a French sample, Mazaux, Masson, Levin et al (1997) reported that lack of mental flexibility and poor planning were associated with caregiver assistance. In a qualitative study of 22 people with brain injury, Granger (1995) asked the caregiver to keep a journal of the amount and type of assistance needed at home. This indicated that supervising individuals who have cognitive and behavioural deficits and who are still mobile can be more difficult than supervising those who lack mobility.
Marsh, Kersel, Havill et al (1998) studied lifestyle changes that were both common and distressing to caregivers at six months (1998a) and 12 months (1998b) after severe traumatic brain injury. At six months, having “less time for myself” was rated as the most common change for caregivers, but was not rated as the most distressing. At 12 months, less time for oneself was rated both the most common and the most distressing change. Similarly, Wallace, Bogner, Corrigan et al (1998) found that high proportions of caregivers of persons with traumatic brain injury reported having to work less (30%), participating in fewer leisure pursuits (43%), and having difficulty conducting usual activities (67%). These are not directly measures of supervision, but both studies imply that the carer is in a constant state of responsibility, which becomes more onerous over time.
The Supervision Rating Scale (SRS), published by Boake (1996), is one of the most commonly cited assessment tools. Hart, Millis, Novack et al (2003) used the SRS in a study of 563 participants with moderate to severe traumatic brain injury. They found that education level achieved prior to the injury was one of the strongest predictors of the level of supervision needed following injury. This may be because education is an indicator of “reserve” cognitive capacity that is available to the person following injury. However, an important finding in this study was that the SRS had a ceiling effect, which meant that it did not measure more subtle kinds of intervention. This is corroborated in McCluskey’s (2003) study of decision-making by carers of people with brain injury. She found that the instrument was insensitive to people who were operating at higher levels.
McCluskey’s study examined the care situations of 14 people with brain injury. Her study indicated that supervision is a crude measure of the kind of things that a carer is likely to do for someone with a brain injury. She recommended that autonomy should be the true measure of outcome for people with brain injury in the community, rather than concepts such as dependence and independence. Her findings indicate that the use of tools measuring supervision levels tends to over-emphasise independence as the most favorable outcome. She distinguished between care decision-making and care maintenance and placed considerable emphasis on the latter. Care maintenance involves being a friend, coach and negotiator for the person with brain injury (McCluskey, 2000), and it requires skills such as conflict management, mediation and counseling skills. It is necessary for carers working in this field to be able to manage “relationship issues…emotional crises…cognitive impulsivity…and situations which pose a risk” (McCluskey, 2003, p.183). McCluskey’s qualitative research provides a more nuanced perspective of the practice of carers, which this research aims to build on.
One of McCluskey’s (2003) findings strongly suggested that agencies do not take seriously their responsibility to train and supervise carers of adults with brain injury. The need for training was illustrated in a survey done of staff in a rehabilitation program who were asked about the kinds of ethical issues that they faced when working with adults with brain injury (Tarvydas & Shaw, 1996). Respondents to the survey were provided with a list of twenty-five ethical issues, ranging from patient abuse to breaches in confidentiality. The overwhelming response was that staff experienced the lack of training and experience as the largest ethical issue that they faced. The high frequency of problems associated with inadequacy of training was not restricted to any particular professional group or to any particular type of rehabilitation setting. The authors suggest that inadequacy of training is a major source of distress and threat to staff morale. In response to this need Willer (1998) set out to develop generic training courses about brain injury. He started with the hypothesis that training needs for everyone working with brain injury are the same and tested this by putting professional and non-professional groups through identical training material. He found that professionals performed better than non-professionals when tested at the beginning and end of the training. However, the rate of learning of course content was the same for professionals and for non-professionals.
The need for training seems evident, but other research suggests that health professionals need to think carefully about how they provide input. In carers’ accounts of how they learn their practice a necessary element is a sense of self-reliance. The importance of self-reliance can be seen by its role as a coping mechanism (Lundh et al., 2003), together with the fact that loss of self reliance is associated with an increase in the burden experienced by the carer (Wells et al., 2005). The most significant learning for the family carer may come from listening in various ways to the person with brain injury. Franks (1995) called this the "pedagogy of suffering", which means that the one who suffers has something to teach. Families may be better at paying this kind of close attention than professionals. A longitudinal study of people with brain injury found families identified behaviour change in about 80% of the people with brain injury, and more behavioural problems were reported by families than by nurses (Johnson, 1996).
Further caution on the part of professionals is suggested by a number of indicators that suggest the phase of depending on professionals for help is short-lived. In a survey reported by Johnson (1997), the more contact families of people with brain injury had with professionals the less satisfied they were. Families were the most satisfied with recreation therapists, closely followed by their neurosurgeon. They were moderately satisfied with occupational therapists, physiotherapists and nursing staff. On the other hand they were dissatisfied with social workers and psychiatrists and they were extremely dissatisfied with neuropsychologists. Caution might be needed in drawing inferences about the relationship between degree and contact and satisfaction, since dissatisfaction may be a cause of seeking more professional engagement. However, this finding is somewhat corroborated by Katz (2005) who showed that wives whose husbands were in a rehabilitation unit reported more burden than wives whose husbands were not. Perlesz and O’Loughlan (1998) also found that there was greater family adjustment and less burden where husbands were no longer undergoing therapy. This is not an argument for reduced involvement with health professionals, but work needs to be done to explore the kind of contact that is likely to be of most benefit to the carer.
Therapeutic best practice in the field of brain injury
Some answers about what health professionals should do may be provided by recent reviews of best practice. In this section the literature describing the “participation to learn” approach is reviewed and the main points are highlighted. This includes the concept of “roles as goals”, the general sense that this approach brings about satisfactory outcomes, and the use of supports.
There is a growing recognition that there are social and personal costs associated with the restriction to participation in ordinary life imposed by illness and injury (World Health Organization, 2002a). A recent electronic search of the literature since 1990 that concerned participation by people with brain injury (Carlson, Boudreau, Davis, Johnston, Lemsky, McColl et al., 2006) yielded 974 articles of which 30 focused on interventions that targeted participation. Ten of these articles related to interventions primarily intended to reduce impairment or activity limitation as a pre-condition for participation in valued life roles. The other twenty articles were about interventions primarily intended to provide the personal support or environmental accommodation necessary for participation in valued life roles, with the expectation that participation would provide both the opportunity and the context for any necessary skill learning and attitude change. Essentially these groups represented two different models: a traditional “learn to participate” model, where people are prepared for participation in the ordinary world, but there is often a gap between the preparations and the participation; and the more recently influential “participate to learn” model, which focuses on placing the person in real life situations, on the presumption that this is where they will learn best.
The “participate to learn” model is not a new idea. In the field of brain injury it has been advocated by Ylvisaker, Hanks and Johnson-Greene (2002), Willer and Corrigan (1994), Buffington and Malec (1997) and Mills, Nesbada, Katz et al (1992). In a study of 830 participants in a Post-Stroke Rehabilitation Outcome Project Horn, DeJong, Smout et al (2005) found that earlier involvement in higher-order, more challenging therapy activities was associated with better overall outcomes. When higher order activities were the focus of therapy, lower level functional activities improved even when those activities were not directly addressed by treatment.
The “participate to learn” approach contains three significant elements for the practice of carers. The first element is a strong emphasis on the idea that roles can serve as rehabilitation goals (“roles as goals”). In two sets of case studies (Gutman, 1999, 2000) the use of the male roles (of brother, son and adult male) were demonstrated as significant goals for the clients Gutman was working with. In a range of other studies it was the role of worker that was the most frequently identified goal. This group of studies that focused on the role of worker as a goal also demonstrated the superiority of supported employment as compared to more traditional pre-vocational training in achieving stable employment (Buffington & Malec, 1997; Curl, Fraser, Cook, & D., 1996; Erlandson, Noblett M.J, & A., 1998; Gamble & CL, 2003; Johnson, 1998; O'Neill, Zuger, Fields, Fraser, & Pruce, 2004; Wehman, Kregel, Keyser-Marcus, Sheror-Targett, Campbell, & Cifu, 2003; Wehman, Targett, Freeman, & Leino, 1996; West, 1995).
The second element of the “participate to learn” approach is that learning through experience in real-life activities is a successful strategy. Salazar, Warden, Schwab et al (2000) described a highly successful home programme of rehabilitation that was based almost entirely on participation in the ordinary activities of daily life at home and in the home community. In a review of community re-entry programmes Johnston (1991) reported that experience in a group living situation resulted in increased participation in homemaking, even though for most participants this was not an identified goal of treatment. The supported employment literature also strongly supports this element (Curl et al., 1996; Gamble et al., 2003).
The third, and final, element of the approach is that both personal and environmental supports can be used to enable participation in valued life roles. Personal support can be provided by family, friends, colleagues and paid assistants. It can take the form of direct assistance or coaching, where coaching is about supporting both the learning of skills and strategies and the development of self-awareness and self-esteem. Environmental supports include an adapted and accessible environment, aides (e.g., wheelchairs, palm pilots, kitchen timers) and inclusive community attitudes. Several of these supports were demonstrated in the supported employment literature (Erlandson et al., 1998; Kowalske, Plenger, Lusby, & Hayden, 2000). Kowalske, Plenger, Lusby et al (2000) described strategies for reducing distractions and increasing structure in demanding environments; and West (1995) showed that workplaces that were generally supportive of their workers were also supportive of people with brain injury. It was also demonstrated that support by job coaches was an effective strategy in returning to work (Curl et al., 1996; Hibbard, Cantor, Charatz, Rosenthal, Ashman, Gunderson et al., 2002; Wehman et al., 1996).
Carers obviously have a major contribution to make in a “participate to learn” approach, since they are the people who have most contact with brain injury in the community and they also have the most natural environment available to them. In the context of a “participate to learn” paradigm, it is clear that the only thing that programs lead to is the next program and so it is potentially more effective for the adult with brain injury to receive their rehabilitation in the community from carers. My research expands the literature about the effectiveness of participation as a rehabilitation strategy to include the work of carers.
Care involves a complex relationship, which goes far beyond anything that is touched on by descriptions of the burden that it can cause. The meanings attributed to care have roots in ancient systems of philosophy and religion and also in feminist analyses of the ethics of care.
The literature about the burden of care following brain injury introduces this chapter, since most of the work in the disability literature focuses on this aspect of care. However, in the ethics of care the real problem is seen as a conflict between the values of justice and care, which is exemplified in the work of Kittay. There is no easy way through this dilemma, but describing and analysing the practice of care is a first step towards understanding what is really at stake.
The practice of care is discussed below using literature from philosophy. Ruddick, in particular, provides a framework for the findings chapters in this thesis, in which the work of carers is analysed as a practice. The “caring career” is then used as a concept that introduces the stages associated with caring and it is illustrated with material from anthropology. The reader should be able to see that the practice of care forms one element of the overall caring career.
In the professional literature there has been some promising work generated around the idea that participation provides the most effective form of rehabilitation. Analysis of the work of carers in the field of brain injury tends to focus on supervision and care decision-making, rather than on the ways in which carers bring about participation for the person with brain injury. In chapter two I suggest that the overall aim of the carer for the person with brain injury is to find a way of re-connecting the person with brain injury into an ordinary life. The carer can only bring about this kind of connection by facilitating the participation of the person with brain injury. The practice of the carer therefore potentially achieves what is considered to be best therapeutic practice among professionals. In this research I intend to investigate the extent to which the practice of carers has a significant effect on levels of participation for the adult with brain injury and in the findings chapters I elucidate what this means in greater detail.