The Mourning After Brain Injury:
Understanding Loss and Grief
Jean Ann Ruddle
B. Rudi Coetzer
Traumatic brain injury (TBI) in the UK is a common occurrence.
It is estimated that 100-150 per 100,000 of the population
experience a disability as the result of a TBI (British Society of
Rehabilitation Medicine 1998). Taking into account ‘significant
disablement’, Greenwood and McMillan (1993) state this equates
to 250-375 persons in the average health district, or one family in
every 300.
Grief is traditionally defined as the psychological process that
one goes through following the loss of a loved one. However,
other losses can give rise to a similar reaction (Parkes 1972, 1973
& 1976). An individual exposed to a traumatic brain injury is
likely to experience multiple losses, including physical, social
and emotional (Haynes 1994). Because of the chronic disability
following severe TBI, models of loss and grief have intuitive
appeal for helping clinicians understand some of the emotional
consequences following TBI.
Loss and grief
Grief is a natural human response to loss, a universal
phenomenon that is evident in all cultures (Archer 1999). But
whilst its existence is unquestioned, research into grief has been
relatively neglected by the scientific community (Parkes 1996).
This is in part related to the fact that loss is such a fundamental
part of human existence, and therefore grief is seen as a ‘normal’
response. This in turn has meant that grief has been overlooked
as an area of scientific research due to the almost ordinariness of
the phenomenon.
Shand’s (1914 & 1920) early psychological accounts of grief
drew on poetry and literature, yet despite this lack of empirical
evidence, Shand described four types of grief reaction; one active,
which was directed externally; one depressive, which lacked
energy; one suppressed through self control and lastly, one
involving frenzied activity. Shand acknowledged individual
variations and changes over time. He also identified other factors
such as the importance of social support. Freud (1917) went further
to state that much psychiatric illness was the expression of
pathological grieving. His theory centred on the loss of the loved
‘object’ and the painful reality when this is difficult to accept.
Despite early psychoanalytical accounts of grief, the first well
Jean Anne Ruddle, D. Clin Psy., Adult Mental Health Service, Conwy
& Denbigshire NHS Turst, Aston House, Deeside Community Hospi-
tal, Plough Lane, Aston, Deeside, CH5 3LX, United Kingdom. B. Rudi
Coetzer, North Wales Brain Injury Service, Conwy & Denbigshire NHS
Trust, Colwyn Bay Hospital, Hesketh Road, Colwyn Bay LL29 8AY,
United Kingdom.
Fall 2005 - The Journal of Cognitive Rehabilitation
known empirical study of grief was conducted by Lindemann
(1944). His interviews identified ‘symptoms’ and changes in mental
state. This portrayed an acute grief response, where distress
emerged in waves, and physical illness such as tightness in the
throat and an empty stomach were common. Lindemann also
identified problems when people did not engage in ‘grief work’.
Despite methodological problems, Lindemann’s psychiatric
approach to grief formed the basis of future studies in the area.
The 1960’s saw a number of influential articles on grief; Pollock
(1961) and Averill (1968) in America, and Bowlby (1960 & 1961) in
Britain. Due to the relative lack of empirically sound research on
the subject of grief, Wortman and Silver (1987) and Stroebe (1994)
state that we need to critically examine many of the assumptions
or ‘myths’ about the grief process. One of the most easily
identified ‘myths’ in grief work are the models based on ‘stages’
or ‘phases’. These theories state that the bereaved progress
through a set of distinct categories that can be identified and
described, based on their characteristics. Bowlby’s account is an
example of this. Originally based on children’s reactions to
separation (Bowlby 1960), but later extended to encompass adult
grieving (Bowlby 1980), the four stages he identified were;
numbness and disbelief; yearning and searching; disorganisation
and despair and finally, reorganisation.
Kübler-Ross’s (1969) name has become synonymous with the
stages of grief model. She identified five stages that dying people
were reported to go through; these being; denial, anger,
bargaining, depression and acceptance. This was later extended
to grieving in general. Whilst this model has been hugely
influential, it has also been heavily criticised not least for the lack
of evidence to support its existence and whether people move
from stage one through to stage five (Corr, Nabe & Corr 1997).
Parkes (1970, 1972 & 1996) is generally viewed as providing
the best accounts of the grief process, and despite adopting a
‘stage’ approach, initially; he later looked more specifically at the
components that delineated grief into two categories (Parkes
1985 & 1996). These were; episodic reactions such as anger and
searching and a general background disturbance which included
affective symptomology such as anxiety and depression.
Worden (1991) moved from a ‘stage’ model to a ‘task’ based
approach, stating that transition through grief involved the
completion of four tasks namely; to accept the reality of the loss;
to work through the pain of grief; to adjust to an environment in
which the deceased is missing and to emotionally relocate the
deceased and move on with life. This approach was more flexible
and less rigid than the ‘stage’ approach as the tasks were not
seen as being completed in a set order.
13
 More recent research has focused on the neural correlates of
grief using fMRI techniques (Gündel, O’Connor, Littrell, Fort &
Lane 2003). Grief was elicited by showing photographs of the
deceased to bereaved women combined with words specific to
the death event versus neutral words. Many centres of the brain
were seen to be activated, showing that the grief response was
mediated by a complex distributed network which subserved;
affect processing, mentalizing, episodic memory retrieval, pro-
cessing of familiar faces, visual imagery, autonomic regulation
and modulation/coordination of these functions.
Stroebe and Schut (1995) offered a ‘dual process approach’ to
loss. They recognised that there was no ‘grief process’ per se,
but a complicated interaction between polarised states; namely a
‘loss orientation’ and a ‘restoration orientation’ that occurred
concurrently, the former is associated with traditional ‘grief’ re-
actions and the latter by attempts to rebuild ones life and move
on, as smoothly as possible. They moved away from a biological
‘natural’ theory of grief and acknowledged interactions on a psy-
chological, social and cultural level and elevate ‘loss’ to a level of
complexity outside of normal human experience that avoids the
tendency to oversimplify. This translates as no ‘healing’ proce-
dure, or procession of stages, but an oscillation between the two
orientations with one dominating at any given time. They state
that in the early stages of a period of grief the ‘loss orientation’ is
likely to dominate whilst ‘restoration orientation’ will gain domi-
nance over time. They avoid the notion of a simple translation of
one stage to another, and enable the ‘loss orientation’ to emerge
temporarily a long time after the loss event for example at anni-
versaries. This encompasses the tension aspect of grief, rather
than a simplified linear pathway.
The work by Gündel et al. (2003) and Stroebe and Schut (1995)
enable us to make the shift from grief associated with the loss of
a loved one to other types of losses. These have included, divorce
(Kitson 1982) unemployment (Fagin & Little 1984), forced
migration (Munoz 1980), childlessness (Houghton & Houghton
1977) and the losses involved in recovery from cancer (Maker
1982). Hainsorth (1998) and Read (2002) have looked at
professions involving multiple losses i.e. nursing, as increasing
the potential psychological risk that this exposes individuals to.
Parkes has also extended his research to look at grief experienced
due to loss of a limb and loss of a home (1972, 1973 & 1976). Like
death, Parkes describes loss as often being a ‘post hoc’
attribution, that is, it is only after events that we realise the impact
of the loss.
Grief has therefore been used to describe a process that can
occur after any significant loss or perceived loss event. Brain
14
injury literature however, has focussed more heavily on the
traditional psychiatric classification (E.g. Diagnostic and
Statistical Manual of Mental Disorders IV, APA 1994) of
observable signs and symptoms to describe the emotional
disturbance following TBI.
Emotional and psychological difficulties following TBI
Parkes (1996) states that medical classification of disease is
based upon the symptoms observed when aetiology is unknown.
In relation to grief, Parkes describes how psychiatric labels have
been used to describe grief in terms of anxiety states, phobias,
and depressive reactions for example. Labelling grief based on
symptoms however, reduces the experience to a state rather than
a process that people move in and out of and ignores individual
circumstances.
Although depression is a common condition in non-brain
injured populations, Stonnington (2001) states that it is more
prevalent for individuals with a brain injury. In an evaluation of
the type and extent of psychiatric syndromes one year after a
TBI, Deb, Lyons and Koutzoukis (1999) interviewed 120 patients
aged 18-64 and compared psychiatric presentation in their group
against a study of the general population. Depressive illness
was the most common diagnosis across both groups, the second
most common diagnosis post-injury was panic disorder occurring
in nine percent of the sample compared to less than one percent
in the general population.
In a similar study, Deb, Lyons and Koutzoukis (1998) specifi-
cally focusing on neuropsychiatric sequelae one year post minor
head injury, interviewed 148 adults who had been admitted to
hospital with this diagnosis. They established that seventeen
percent were diagnosed with psychiatric problems and fifty-five
percent of participants showing at least one of the symptoms of
post-concussional syndrome. The most common presentation
after one year was neurobehavioral with thirty percent reporting
irritability, twenty-nine percent describing sleep disturbance and
twenty-seven percent reporting impatience.
Assessing a population based sample, Silver, Kramer,
Greenwald and Weissman (2001) found ‘hidden TBI’ to be a
common occurrence within the general population. That is,
individuals with a previous head injury that do not associate
their current problems with a previous TBI. Silver et al. found
higher rates of psychiatric symptoms in the TBI group relating
this to the effects of the accident and/or the effects of disabilities
arising from the TBI. They also assessed quality of life (QOL)
variables including physical health, emotional health or being on
Fall 2005 - The Journal of Cognitive Rehabilitation
welfare or disability support and found that the TBI group scored
lower on these variables.
Anxiety disorders are common following TBI and Hiott and
Labbate (2002) provide an overview of the topic. The relation-
ship between brain injury and Post-Traumatic Stress Disorder
(PTSD), while perhaps controversial, is receiving more attention
in the literature. For example, Feinstein, Hershkop, Jardine and
Ouchterlony (2000) identified symptoms of PTSD of varying se-
verity present in eighty-four percent of their sample two months
post injury. They found evidence to support the hypothesis that
pre-morbid personality and lifestyle factors were vulnerability
factors. They also found evidence of psychiatric co-morbidity
with disorders such as depression and anxiety following TBI.
Obsessive-compulsive disorder (OCD) has also been reported
following TBI (Berthier, Kulisevsky, Gironell & Lopez, 2001).
Again, there may be some overlap between symptoms common
to both OCD and TBI and making a diagnosis can sometimes be
difficult (Coetzer & Stein, 2003).
One of the more serious implications of head injury is the
potential link between TBI and vulnerability to suicide (Teasdale
& Engberg 2001; Fleminger, Oliver, Williams & Evans, 2003). It
has been suggested (Fleminger et al. 2003) that some of the
depressive and emotional distress evident post TBI may be related
to an increase in awareness of disability, and that insight deficits
may function as a protective defence mechanism. It is the
recognition of losses that Fleminger et al. see as a trigger to
psychological disorders such as depression.
A common theme in the literature is that depression and several
other disorders appear to be more prevalent following a TBI and
that an individual’s presentation post TBI is dependent on a
complex interaction between biological, psychological, social,
environmental and pre-injury factors. Clearly the use of
psychiatric classification systems has some clinical utility. In
addition, models of grief can potentially enrich practitioners’
understanding of the psychological consequences of TBI.
Loss and grief following TBI
There are a number of similarities between the psychiatric
classification of emotional sequelae in TBI and the early scientific
accounts of grief (Lindemann 1944), not least that they are both
symptom based. Using grief as a model in TBI populations is
therefore an intuitive link to make. It enables us to move away
from a structuralist approach to more functionalist based
hypotheses. This focuses not on the classification of symptoms,
but the importance of the meaning of the experiences, which in
many ways reflects the way research into bereavement as a whole
has changed. Indeed, from a clinical perspective there is likely to
be a significant overlap between what is labelled as grief,
depression and/or PTSD and that it is not always possible to
disentangle the biological and psychological factors affecting
an individual’s presentation (Coetzer and Corney, 2003).
In a study of disability, Sapey (2002) states that a person’s
response to events will depend on their individual circumstances;
that is how they have construed the possibility of impairment
prior to disability. Similarly, it has been shown that finding
meaning is central in adjusting to loss and trauma with regards to
one’s sense of self worth and one’s beliefs and assumptions
about how the world works (Davis & Nolen-Hoekesma 2001).
Fall 2005 - The Journal of Cognitive Rehabilitation
To this end, the brain injured individual is faced with multiple
losses. Haynes (1994) states that the brain injured individual
stands to lose life as it was known to them. Judd and Wilson
(1999) go on to say that brain injury can be one of the “most
devastating, disempowering and seemingly incomprehensible
experiences” to affect an individual as well as their family. Tasker
(2003) highlights not only the tangible losses, but also losses
such as the “illusion of self control and self protection” as well
as a sense of emptiness, reduced existence and the frustration of
not feeling understood.
Persinger (1993) states that a significant altering in self con-
cept may occur following severe closed head injuries. This is due
to the diffuse synaptic modification within the temporofrontal
regions resulting in a loss of sense of self. This loss of sense of
self should provoke a grief like reaction. Persinger describes the
grief as in response to the alteration of the pre-morbid self con-
cept and would constitute a kind of “identity crisis”. This fragile
self concept could easily be devastated by other losses enforced
upon them, activities which would have previously defined them
as individuals. Loss of sense of self after TBI is discussed in
greater depth by Nochi (1998) and also Myles (2004).
Loss of self-awareness after brain injury has received a great
deal of attention from researchers. Newman, Garmore, Beatty and
Ziccardi (2000) report that self-awareness is a unique construct
in the early stages of rehabilitation and that it needs to be
monitored throughout recovery. Fleming, Strong and Ashton
(1998) found that rehabilitation, timing and approach may need
to be tailored to match the individual’s levels of self awareness,
motivation and emotional distress. Similarly, Trundel, Tyron and
Purdman (1998) found that impaired awareness negatively impacts
on vocational and residential placements and that it is a significant
predictor of outcome variables. Hillier and Metzer (1997) state
that people with a TBI are more likely to be aware of residual
physical disabilities to the exclusion of social domains. They
describe a ‘hierarchy of needs’ ranging from lower physiological
skills that need to be accomplished before the individual can
move on to higher order self-actualizing skills.
Lezak (1987) makes the point that brain injured individuals
are much more likely to be seriously handicapped by emotional
and personality disturbances than by their residual cognitive or
physical difficulties. Judd and Wilson (1999) describe the multiple
losses as requiring careful re-negotiation and adaptation into the
identity of the self, and that feelings of worthlessness,
helplessness and a dislike of the ‘new’ self could be a
manifestation of mourning for the pre-injury self.
Tasker (2003) describes how brain injury “renders the parts of
the whole disrupted and shattered, exposed and torn apart” and
when “the body and brain are brilliantly yet objectively treated”
there is cost to the individual and their family. One of the main
consequences of experiencing a TBI according to Tasker (2003)
is that the individual develops a conscious involvement with
death and that in order to gain wholeness and meaning, one must
integrate the past, present and future, and that ‘optimal resolution’
involves a synthesis of apparently incompatible poles, e.g. hope
versus hopelessness, acceptance verse denial, struggle verses
surrender and depletion verses creativity.
Meredith and Rassa (1999) found a positive correlation
between a TBI individual’s level of awareness and their stage of
grief, and that a gradual progression through the stages of
15
grieving would coincide with the improvements of self awareness
of deficits. They found that emotional reaction to changes were
described as similar to the Kübler-Ross (1969) model of grief after
loss of a person, these being; denial, anger, bargaining, depression
and acceptance. In a population of brain injured patients, Coetzer
and Corney (2001) found that feedback of findings from self
awareness assessments to participants resulted in a decrease of
subjective grief in those individuals.
More common in the literature is a focus on the carers’
experience of loss. Webster, Daisley and King (1999) state that all
family members need to make an adjustment to changed life roles,
and that the losses experienced by the family are not final, and
difficulties might arise due to the injured person being a constant
reminder of what has been lost, making the grieving process
more protracted. In focussing on grief after TBI, MacFarlane
(1999) states that not only does the individual have to deal with
a variety of losses, but the family members do also, one of the
common reactions feeling that the person they know has ‘died’.
This finding is supported by Zinner, Ball, Stutts and Philput (1997)
who found that mothers of TBI individuals reported more intense
grief than parents who had experienced other significant non-
death losses.
An increased understanding of symptoms post brain injury
and the expression of emotions through a person centred
approach and theory of loss framework may be prerequisites for
the longer term tasks of increasing self awareness and making
meaning from the losses endured (Coetzer, 2004). It is evident
that there is a growing body of literature applying models of loss
and grief to explain some of the emotional effects associated with
a TBI.
Loss as a consideration in neuro rehabilitation
Several neuro-rehabilitation models now incorporate
psychotherapy as a component of the programme. Indeed, Judd
and Wilson (1999) believe that psychotherapy should be offered
routinely for all neurologically damaged patients. They make the
point that re-assimilation of identity does not have an end point
but is a life long adaptive process whether an individual is brain
injured or not. It stands to reason therefore that an individual
with limited cognitive abilities may need more guidance in making
sense of what has happened to them. As such, there is a growing
body of literature looking at adapting traditional forms of
psychotherapy to meet the needs of a brain injured population
(e.g. Khan-Bourne & Brown 2003, and van den Broek 1999).
However, on a more cautionary note, it should be pointed out
that not all persons with TBI will necessarily benefit from
psychotherapy (Prigatano, 1999).
In terms of outcome, group affiliation and acceptance have
been identified as factors needed post injury in order for
individuals to experience a greater sense of control and
empowerment (Vandiver & Christofero-Snider 2000). Snead and
Davis (2002) found that individuals with TBI who had a positive
attitude towards disability had a greater level of acceptance of
their own, and others’ disability. In order to maximize outcome in
therapy, Meredith and Rassa (1999), state that one should utilize
techniques to facilitate the simultaneous progression of both
awareness of deficits and acceptance of losses, where a grief like
process will be evident.
16
In assessing awareness, Fleming, Strong and Ashton (1996)
advocate an approach that looks at multiple measures from
multiple sources. Whilst later stating that rehabilitation needs to
be timed and tailored to match an individual’s level of self
motivation and emotional distress (Fleming, Strong and Ashton
1998). Gasquoine and Gibbens (1994) believe that assessment of
awareness can assist in rehabilitation enabling people with a TBI
to participate in therapies, whilst at the same time, reducing staff
sense of failure. Coetzer and Corney (2003) state that failure to
acknowledge emotional processes for the individual and the carers
will severely compromise efforts at rehabilitation. Leading on
from this, Coetzer (2004) argues that psychotherapeutic work
needs to take into account both levels of self awareness and the
grieving process, and how they interact. Coetzer (2004) goes on
to suggest that understanding the long term effects of brain
injury in terms of its relationship to grief and self-awareness may
assist rehabilitation professionals in their psychotherapeutic
interventions with this population.
Models of rehabilitation are based on a philosophy of facili-
tating maximum recovery by drawing on strengths and compen-
sating for weaknesses. However, rehabilitation has often ne-
glected the emotional recovery that must inevitably take place.
As discussed in this paper, failure to take care of an individuals
psychological needs can adversely affect their outcome. In this
context, is important to remember that according to Ben-Yishay
(2000), a person had entered the stage of acceptance when he or
she ceases to mourn the losses sustained following TBI.
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