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The experiences of family members of brain injured individuals in the early phase after the injury :… Kleemann, Ulrike Hela 2001

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T H E E X P E R I E N C E S OF F A M I L Y M E M B E R S OF B R A I N INJURED INDIVIDUALS IN T H E E A R L Y P H A S E A F T E R T H E INJURY: A N EXPLORATORY MULTIPLE CASE STUDY  by  Ulrike Hela Kleemann B.A., Simon Fraser University, 1997  A THESIS S U B M I T T E D IN P A R T I A L F U L F I L M E N T OF T H E R E Q U I R E M E N T S FOR T H E D E G R E E OF  MASTER  OF A R T S in  T H E F A C U L T Y OF G R A D U A T E STUDIES (Department of Educational and Counselling Psychology, and Special Education) We accept this thesis as conforming to the required standard  T H E UNIVERSITY OF BRITISH C O L U M B I A May 2001  ©  Ulrike H . K l e e m a n n ^ 0 C 1  In p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t of the requirements f o r an advanced degree at the U n i v e r s i t y of B r i t i s h Columbia, I agree t h a t the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and study. I f u r t h e r agree t h a t p e r m i s s i o n f o r e x t e n s i v e c o p y i n g of t h i s t h e s i s f o r . s c h o l a r l y purposes may be granted by the head of my department or by h i s or her r e p r e s e n t a t i v e s . I t i s understood t h a t copying or p u b l i c a t i o n of t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l not be a l l o w e d without my w r i t t e n p e r m i s s i o n .  Vancouver, Canada  Date  11  ABSTRACT Traumatic brain injury affects thousands of individuals and their families each year. The importance of the involvement of family members in rehabilitation in order to maximize the injured person's functioning has long been recognized. However, the importance of support and counselling for the family members has only become more apparent in the past 10 to 15 years. Initial research on brain injury and the family was concerned with identifying the burden on the family and factors related to their stress. Researchers also have attempted to develop questionnaires to assess families' needs. Recent research is beginning to look at the adjustment and adaptation process to brain injury by family members. Most research on the effects of brain injury on the family has been quantitative in nature and some limits exist due to small sample sizes, insufficient assessment, and lack of evidence of reliability and validity of questionnaires. Two significant gaps remain: the lack of information on family members' experiences, reactions, and needs in the initial phase after the injury (the first few weeks), and the lack of qualitative research in this area that would allow families to express and describe their own experiences. This study explores the experiences of family members of individuals with severe traumatic brain injuries during the patients' stay in acute care from their personal perspective.  iii T A B L E OF C O N T E N T S Abstract Table of Contents List of Tables List of Figures Acknowledgements Dedication C H A P T E R I: INTRODUCTION Rationale for the Study Purpose of the Study Research Question Definition of Concepts and Terms  11  iii v i " » 1 3 4 6 6  y  v  v i  C H A P T E R II: L I T E R A T U R E R E V I E W Traumatic Brain Injury Demographic Information Effects on the Family as a System Experiences in Acute Care The Long-Term Burden on the Family Adjustment and Adaptation Needs Assessment Summary of Literature Review  8 8 10 11 12 13 17 22 25  C H A P T E R II: M E T H O D SECTION Research Strategy . . ; Participants Selection Criteria Recruitment Data Collection Information about the Environment Family Member Interviews Research Journal Field Notes Focus Group Data Analysis and Interpretation Staff Interviews Family Member Interviews Securing Confidentiality and Ethical Conduct Trustworthiness Credibility Verisimilitude Usefulness/Pragmatics The Position of the Researcher  27 27 28 28 29 30 31 31 33 33 34 35 35 35 37 38 38 39 40 41  iv C H A P T E R IV: R E S U L T S Description of the Setting Individual Stories A. 's Story Outline of Events Emotional Response and Reactions Personal Processes and Changes B. 's Story Outline of Events Emotional Response and Reactions Personal Processes and Changes C s Story Outline of Events Emotional Response and Reactions Personal Processes and Changes D.'s Story Outline of Events Emotional Response and Reactions Personal Processes and Changes Comparison of Themes and Patterns Descriptive Summary of Participants and Injured Family Members Individual Experiences Overriding Themes Initial Impact of the Injury Emotional Reactions Personal Processes Needs Coping efforts Meaning Making Medical System Environment Staff Recommendations for the Hospital from the Participant  44 44 48 49 49 50 56 57 57 59 64 65 65 67 71 73 73 74 79 81 81 85 85 87 88 90 93 95 98 99 99 100 101  C H A P T E R V : DISCUSSION Limitations of the Study Relationship to Past Research Future Research Implications for Practice  104 104 105 112 113  References Appendices Appendix A : Invitation to Participate Appendix B: Staff Person Consent Form Appendix C: Family Consent Form Appendix D: Informed Consent Form: Group Appendix E: Demographic Infonnation Form Appendix F: Interview Guide - Staff Appendix G: Interview Guide - Family Members  117 126 126 127 128 129 130 132 134  V  LIST OF T A B L E S Table 1 Table 2  Family Members Injured Person  82 82  LIST OF FIGURES . Summary of Themes  Vll  ACKNOWLEDGMENT  This research was guided by the knowledge and support of my supervisor, Dr. Maria Arvay. I would also like to thank Dr. Bonnie Long and Dr. Sonia Acorn, the members of my committee, for their advice and support. I wish to extend my thanks to Mary Nieforth, who assisted me in gaining access to the hospital where I recruited my participants, Vancouver Hospital and Health Sciences Centre, Vancouver, B.C. Her assistance in recruitment of family members and staff members for interviews and her sharing of information were invaluable in the process of this study. I also wish to thank all the participants who were willing to share their knowledge (staff members) and their stories (family members) with me. The completion of my degree and this thesis was possible because of the unwavering support from my parents, Gisela Kleemann and Dr. Ulrich Kleemann, and my partner, Jim Nelson.  DEDICATION  For Jim  and  For my Mother and Father  with love  C H A P T E R I: INTRODUCTION Each year thousands of individuals receive a traumatic brain injury (TBI) and many of them will require life long support (Kosciulek, 1997; Wong, Dornan, Schentag, Ip, & Keating, 1993). This type of , injury can lead to a variety of impairments, some of which will improve over time, others lead to lifelong handicaps. Residual effects are multifaceted, covering the full range of physical, cognitive/perceptual, behavioural, and emotional functioning of an individual and usually result from a combination of damage related to the primary injury and secondary reactions to the deficits and problems (Brooks, 1991; Kosciulek, 1994; Lezak, 1988). However, the injured person is not the only one affected. Rather, brain injury usually becomes a "family affair" (Lezak, 1988, p. 111). The families of persons with TBI are also affected for several reasons. First, brain injury often results in long-term changes in the injured person, affecting his/her physical and emotional functioning as well as personality (Lezak, 1988; Vogenthaler, 1987). Second, it is often the family that provides the long-term assistance and support to the injured person (Grahame, 1991). Last, the family system becomes severely interrupted and unbalanced by the injury of one of its members (Richmond & Craig, 1986; Williams, 1991). The family needs to adapt to and learn to cope with the challenges of the brain injury and the associated changes in order to regain balance (McCubbin, Thompson, & McCubbin, 1996; Williams, 1991). Much research has occurred in the past 20 years about families and brain injury in four main areas: (a) the burden of TBI on the family (Kosciulek & Lustig, 1998; Livingston, Brooks, & Bond, 1985; Oddy, Humphrey, & Uttley, 1978); (b) assessment of needs of families (Acorn, 1993; Devany Serio, Kreutzer, & Gervasio, 1995; Engli & Kirsivali-Farmer, 1992; Molter, 1979); (c) factors that influence coping and adaptation (Kosciulek, 1994, 1995, 1997; Kosciulek, McCubbin, & McCubbin, 1993), and (d) intervention strategies (Gleckman & Brill, 1995; Maitz & Sachs, 1995; Soderstrom, Fogelsjoo, Sjogren Fugl-Meyer, & Stenson, 1992). However, gaps in research on TBI still remain and are briefly outlined. Many of the published studies focus on families that are at least six months, and often several years, post-injury and exclude the immediate post-injury phase (Kosciulek & Pichette, 1996; Kreutzer, Gervasio, & Camplair, 1994b; Livingston & Brooks, 1988). Most of the studies that do address acute care experiences and needs of families cover a range of diagnoses and focus on the first 2 to 4 days in intensive care (Mathis,1984; Molter, 1979; Stover Leske, 1986). It remains unclear, if and how the needs of family members of brain-injured individuals differ from those of other critically ill patients and how these needs may change over time. Most of the research has been exploratory and quantitative in nature and many studies have small sample sizes (Engli & Kirsivali-Farmer, 1993), lack of clear  2 definition of 'the family' (Stover Leske, 1986), or the use of questionnaires and structured interviews without providing information about the psychometric properties of the instruments (Molter, 1979). The perceptions of the family members through their own words have only rarely been the research goal. Frank (1994) points out that the importance of the family of brain injured individuals is widely recognised, but that the process of including these families into the rehabilitation process is still poorly understood. Some changes have occurred since Brown and McCormick (1988) concluded that the current head injury rehabilitation system is "client-centred" as opposed to "family-centred" (p. 16) and that families are often not fully integrated into the rehabilitation team. However, many programs continue to treat family members as a resource for rehabilitation of the brain-injured person (a byproduct of the process), not as recipients of treatment themselves (Kosciulek, McCubbin, & McCubbin, 1993). There is little research available about programs for family members, especially in the early phase after the injury (acute care, initial rehabilitation). In my experience of working within the rehabilitation system, programs are often implemented based on the clinicians' observations. According to Dembo (1964), however, there are differences between professionals and family members (layperson) with regards to their positions in the system, their purpose, and their views about improvement. The professional maintains an outsider stance, has less emotional involvement in the situation, and remains an objective observer, whereas the family members are positioned as an insider and participant in a medical situation and have a high emotional investment. Considering that past research has not included the insider view, the question arises whether interventions and programs based on clinical judgement and objective and outsider-based research address the families' needs to the best possible extent. Obtaining the insiders' view can therefore provide valuable information with regard to existing interventions and programs for families struggling with the aftermath of TBI. Before discussing this topic in further detail, the term 'family' needs to be addressed. The literature is often unclear in its definition of 'the family'. Studies concerning the 'family' frequently only consider the main care-giver or focus on a parent or spouse (Allan, Linn, Gutierrez, & Wilier, 1994; Devany Serio, Kreutzer, & Gervasio, 1995). However, family systems theory holds that the individual member does not represent the family as a whole. Rather, the family consists of all its members, the specific characteristics of the family unit, interactional patterns, the functioning of the family, and the family life cycle (Turnbull & Turnbull, 1991). Romano (1989) defined the family as including "ties of kinship (i.e., parents, children, extended family of origin); marriage (i.e., spouses, ex-spouses, family of procreation), and sustained intimacy (i.e., close friends, lovers, and so forth)" (p. 34). It is therefore questionable to use only one family member in order to identify experiences of the family in general.  3 Within the scope of this thesis, it was not possible to interview several complete families in the form of a multiple case study design. There are many variations on the family (e.g., single parent, stepfamilies, various sizes of families, same sex families), which probably would lead to a wide range of family reactions and experiences. In order to compare the experiences of families as a unit or system and to be able to draw any meaningful conclusions it would have been important to find several families that have similar characteristics. Because TBI does not occur on a daily basis, it would have required more time than was available for this study to wait for a sufficient number of families that are similar to be struck by TBI. Therefore, in this study I focussed on the family member who spent most time with the injured person in the acute care setting. I recognize that the use of only one family member for each family cannot provide information about families as a unit. Rationale for the Study The majority of studies about family members of brain injured persons are quantitative studies that try to elicit the family members' viewpoint through the use of structured interviews and questionnaires that rely on rating scales. These studies also focus either on experiences within the first 2 to3 days after the injury (ICU experience) or take a long-term view (months to years post-injury), but no research was found covering the first several weeks post-injury while the family members are still exposed to the acute care setting. There are gaps in the existing literature with respect to two prominent issues: (a) the viewpoint of the family members from their own perspective, and (b) the experiences of family members in the acute care phase. In order to achieve a more complete understanding of a specific situation, it is valuable to include various viewpoints while learning about a situation: What is observed and discovered in the object (i.e., its objectivity) is as much a product of this interaction and the protocol and technique through which it is operationalized as it is of the object itself. Moreover, since it is possible to engage an object of study in different ways - just as we might engage an apple by looking at it, feeling it, or eating it - we can see that the same object is capable of yielding many different forms of knowledge (Morgan, 1983, p. 13). The questions that have been commonly asked were developed by professionals, or "outsiders" (Dembo, 1964, p. 231) and may therefore represent a limited viewpoint and restrict the full exploration of an experience or topic. Medical practitioners (doctors as well as other healthcare professionals) continue to be strongly influenced by the biomedical model, although a shift is slowly taking place (Miller & Crabtree, 1994). This medical model, however, is "rooted in a patriarchal positivism" (p. 342). Certain beliefs and values about patients, illness, and recovery, the patient-doctor relationship, and the role of the family are characteristic of this paradigm and may colour questions asked and methods used to answer these questions. These assumptions influence the research within the medical world towards  4 positivist and technological approaches with pragmatic and seemingly explicit ways of information gathering and decision making. This approach offers 'objective facts' as a means to guide the decision of the outsider. Furthermore, the theory saturated methods used in the existing research (questionnaires, structured interviews) do not provide much room for flexibility and may increase the risk of eliciting answers that are biassed to please the researcher (Fontana & Frey, 1994). Questionnaires and structured interviews consist of pre-established questions that are influenced by the researcher's frame of reference. This poses the risk of limiting the participants' range of possible responses, especially in questionnaires that only allow rating scale responses. Rational responses are elicited but emotional components are often not adequately addressed due to the pre-given structure (Fontana & Frey, 1994). Questions asked in a semi-structured interview are equally influenced by the researcher's frame of reference but the loser structure of the interview allows the participants to explore their reactions, emotions, and experiences more fully. The experiences of family members in the early phase after the injury occurred may influence their long term approach to coping and their ability to adjust to this change in their family structure. This early phase, therefore, may be an important time for interventions or programs that could foster adequate coping immediately and in the long term. In order to determine which programs might be most useful and suitable in this early phase, research is needed that more fully explores this time span. In summary, what is missing from our understanding of TBI and the family or family members is, first, research that can elicit the 'insider's' viewpoint in order to determine whether past research in this area that used more of a quantitative approach is fully representative of family members' experiences, concerns and needs. Second, research is missing that addresses the initial several weeks after severe TBI, while the injured person is still in an acute care hospital. This study addresses both of these gaps through its focus on the overall experience in acute care of family members of severely brain injured persons (from the initial injury to discharge from the acute care hospital) and its qualitative approach. The result is a subjective description of the family members' lived experience, their needs, coping attempts, and processes of meaning making in this phase in their lives. The participants in this study were family members designated by a family as the main spokes- person. They recollected their experiences and the meaning they made 1 to 4 weeks after their injured family member was discharged from the acute care hospital. Purpose of the Study This study explored the experiences of family members of individuals with TBI during the patient's stay in an acute care hospital (intensive care unit, neurological intensive care unit, and neurology ward). There are subtle differences in outcomes and recovery processes depending on the  5 nature of the damage, for example, diffuse and wide spread versus focal (Jennet, 1990). Therefore it can be assumed that families are faced with subtle differences in their hospital experience. In order to be able to determine if there are any common experiences, reactions, and meaning making processes of family members exposed to this experience, the participants of this study were therefore limited to family members of individuals with traumatic brain injury. The study concentrated on acute care experiences, because this is the starting point for families who learn to live with a person who sustained a TBI. The participants were restricted to family members of severely injured persons with a Glasgow Coma Scale of eight or lower at the time of admission to the hospital (please refer to TJefinition of Concepts and Terms', p. 6). This patient group usually remains in acute care for several weeks if not months and the long term outcome is often more uncertain. Because their experiences may differ from those family members who are exposed to acute care for a shorter period of time, I assumed that their stories as well as their needs and adaptation processes also differ. Family members were recruited at the time of discharge from the acute care hospital to prevent recruitment of participants whose injured family member may die from the severity of their injury during the stay in acute care. In addition to interviewing family members, four staff members of the neuroscience team in the hospital chosen for this study were interviewed to gain a clear picture of common routines, processes, and occurrences in this environment. I also visited all units to which the participants were exposed during their injured family member's stay at this hospital. This information was used to develop a description of the setting in which the experiences of the participants occurred in order to increase the readers' understanding of the overall situation. Carr (as cited in Clandinin & Connelly, 1994) discusses experiences as temporal and storied. Humans collect their experiences and make meaning from these experiences through creating, recreating, and telling stories. The experiences of the family members of patients with TBI are situated in a particular time in their life, and a family specific story describes their experiences to date. A t the time the injury occurs, the family members' present story is likely interrupted and changed by the impact of the injury and its consequences (e.g., hospital admission, confrontation with possible death, slow recovery, changes in the injured person). The individual attempts to make meaning of these new events and a new or changed story line emerges for him or her. This study did not strive to gain an objective or accurate picture of the participants' experiences, rather, the focus was on the subjective personal experiences and the meaning that they constructed in recollecting their experiences and telling their story. It adds a new and different perspective to the existing research in this area of inquiry, which has approached this topic mainly from an outsider position through questionnaires and structured interviews based on professional's experiences and opinions.  6 Research Question The central question of this study is: What are the experiences of family members of a severely brain injured individual in acute care? I describe and discuss the experiences of the participants of the initial impact of the injury, the experiences of the medical system, their coping attempts with the problems arising from the injury, their needs during this early phase of dealing with a brain injured family member, and their attempts to find meaning in the events. Secondary questions pertaining to needs in acute care and the early adjustment phase to a sudden stressful event emerged as a result of the literature review on needs assessments and adjustment to brain injury. Therefore, the descriptions of family members and themes that possibly emerged in the interviews and analysis were compared to the existing literature on needs assessment and adjustment. Definition of Concepts and Terms Language. I use the terms person or individual with traumatic brain injury (TBI) or brain injured individual when talking about the injured person. This description is somewhat longer than 'the brain injured' but it maintains the focus on the person as opposed to the disability (Wright, 1983). Family Member. The literature about brain injury and the family frequently focuses on the main caregiver as defined through hours of support or type of support provided (Kreutzer, Gervasio, & Camplair, 1994; Livingston, Brooks, & Bond, 1985; Novack, Bergquist, Bennett, & Gouvier, 1991). This definition is inadequate for this study, because the support that family members can provide in the hospital may differ from that provided in the long-term. The main caregiver also could not be identified by the families because the long term outcome and therefore the need to for caregiving was uncertain throughout the stay in acute care. I use the terms 'spokes-person' and 'family member' defined as the person who has had most contact with the injured person while in acute care (regardless of his/her future role in care giving) and who was identified as the spokes- person for the family by the family. The term 'caregiver' is used whenever referring to literature that uses this term. Victim. Victim is used in the literature and I use it when I am quoting or paraphrasing from sources who use the term. In my own writing, I refer to individuals with TBI as described above. Traumatic brain injury. A TBI is an injury to the brain as a result of trauma as opposed to internal events such as tumours, blood clots, and haemorrhages (as is the case in strokes) or infections. The injury to the brain is of a nature that causes irreversible damage to the brain tissue. Glasgow Coma Scale (GCS). The GCS is a clinical scale that is used to assess the severity and duration of coma or reduced consciousness (Teasdale & Jennett, 1974). It measures three aspects of behaviour: "motor responsiveness, verbal performance and eye opening" (Teasdale & Jennett, 1974, p. 81). Eye opening and motor responses are assessed through verbal command as well as painful stimuli,  7 while verbal performance is based on verbal commands. The responses on these three factors are ranked from 3 to 15. Scores between 13 and 15 points indicate a mild injury, between 9 and 12 points indicate a moderate injury, 6 to 8 points indicate a severe injury, and 5 points or less indicate a very severe injury. The injured person is out of a coma when a score of 9 has been reached. Post-Traumatic Amnesia (PTA). P T A is the time between the injury and when the injured person has regained continuous memories(Russel, 1932). This measure is also used to indicate the possible severity of an injury. P T A of less than 1 hour indicates a mild injury, 1 to 24 hours a moderate injury, lto 7 days a severe injury, and more than 7 days a very severe injury (Jennet, 1990). The length of P T A can often not be determined exactly but rather is an estimate that is established retrospectively. Impairment. The World Health Organization defined impairment as "any loss or abnormality of psychological, physiological, or anatomical structure or function" (as cited in Heinemann & Whiteneck, 1995, p. 54). Impairments are classified as intellectual, language, other psychological, aural, ocular, visceral, skeletal, disfiguring and generalized, sensory, and other. In the case of brain injury, any of these impairments can occur in any combination. Disability. The World Health Organization defined disability as "any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being" (WHO as cited in Heinemann & Whiteneck, 1995, p. 54). Recovery. The term 'recovery' can take several meanings. Lezak (1986) explained that family members often view 'recovery' as return to the pre-injury level of function. Clinicians, who are familiar with moderate to severe traumatic brain injury, are aware that a return to pre-injury levels of functioning in all areas usually does not occur. They mean "improvement" (p. 2243) when talking about recovery. I use the term recovery in the sense of improvement. Coping. The topic of coping has been extensively discussed in the literature. In this thesis I am using the basic definitions by Lazarus (1993) and McCubbin & McCubbin (1989). Lazarus described coping as any effort (cognitive or behavioural) by an individual to manage psychological stress (internal or external). The term itself is neutral and only describes an effort or attempt. The outcome of these efforts can be either successful or nonadaptive, depending on several factors such as the situation, the type of stressor, the coping mechanism used, the rigidity in use of coping mechanisms, and others. McCubbin and McCubbin (1989) refer to "strategies, patterns, and behaviours designed to maintain and/or strengthen the organization and stability of the family unit". It also includes the maintenance of emotional stability of individual family members and the utilization of resources in the family and community.  8 C H A P T E R II: L I T E R A T U R E R E V I E W This study investigates the experiences of family members of severely brain injured individuals in the early phase after the injury occurred. No research could be found that addresses this specific time span. Therefore I provide an overview of various topics that are related to the participants experiences. I first discuss brain injury in general and the effects on the injured person, followed by information about demographics and injury frequency. A review of families in general and why they need to be included in the treatment after brain injury is provided as well as information about experiences in the acute phase and the long-term burden of brain injury. Last, I review literature about adjustment and adaptation as well as needs of family members in acute care. Traumatic Brain Injury There are many forms of injury to the head and/or brain. In the past, the term 'head injury' has been widely used to refer to brain injury. In more recent years this has shifted in favour of using 'brain injury' because not every injury to the head causes an injury to the brain. However, some articles cited in this review still use the term 'head injury' when referring to 'brain injury'. Injuries to the brain can be the result of trauma, infections, loss of blood supply either by obstruction or rupture of blood vessels (stroke), a tumour, drug overdoses, lack of oxygen, or excess amount of fluid in the brain (Higenbottam, 1998a). This type of damage is also sometimes referred to as 'acquired brain injury'. There are differences in the type of damage between these causes in so far as certain causes lead to primarily focal damage, while other causes lead to more wide spread and diffuse damage (Jennet, 1990). This thesis is concerned with traumatic brain injuries that usually cause more mffuse and wide spread damage. The effects of TBI are due to two processes, the primary damage of the injury and secondary damage that occurs as a physiological result of, or reaction to, the primary damage. The direct, or primary, damage to the brain is the result of abnormal mechanical forces that act on the brain tissue (nerves, vascular tissue), such as acceleration, deceleration, compression, and shearing (Vogenthaler, 1987). Acceleration and deceleration injuries occur when the head either is moving and comes to a sudden stop or when it is not moving and is suddenly moved forward (Pan, 1989). The brain is a soft mass that has a lose and flexible connection to the skull. Therefore it moves to a certain degree independently from the skull and often in a somewhat delayed fashion. The brain therefore is at risk for hitting the inside of the skull when there are sudden changes in movement. Each impact causes damage to the brain tissue. Additional damage occurs in the deep structures of the brain as a result of these sudden changes in movements, which often also include rotational forces. These forces result in tearing of nerves and vascular tissue and damage to brain cells.  9 Secondary damage frequently occurs as the result of "subsequent pathological processes" (Jennett, 1990, p. 4). Such processes include blood loss (ruptured vessels that lead to haemorrhages and pressures as well as lack of oxygen) and brain swelling that increases pressure in the brain, as well as chemical processes (Vogenthaler, 1987). These secondary processes further damage brain tissue in a diffuse pattern in any region of the brain. Depending on the severity of the primary and secondary injury, the person may experience only a short (or no) period of unconsciousness or may be comatose for several weeks (Vogenthaler, 1987). This study involves family members of severely injured persons and therefore I focus on processes common after severe injury. Injury severity is frequently estimated based on the Glasgow Coma Scale (GCS), with an injury considered severe if the GCS is 8 or less. The period of unconsciousness or coma in this category can last from days to weeks (Miller, Pentland, & Berrol, 1990). Once the injured person becomes more alert, he/she may go through several stages of recovery such as lethargy and passivity followed by restlessness and agitation. Inappropriate, and for the injured person uncharacteristic behaviour is also common such as swearing, fighting, unrealistic demands, hitting, and not recognizing family members and friends. Over time, these behaviours change and the 'old' personality re-emerges. However, usually some residual changes and impairments remain after a severe TBI. The family members of persons with TBI are confronted with coma and these initial recovery stages while in acute care. These processes and changes in behaviour are difficult to understand and often frightening. Most recovery occurs within the first 1 to 2 years post-injury (Vogenthaler, 1987), although it has been shown that recovery continues at a gradual rate until at least 10 years post-injury (Sbordone, Liter, & Pettier-Jennings, 1995). The overall recovery progress is most rapid in the initial phase, within weeks to months after the injury. The rate of recovery slows as the time since injury increases (Long, Gouvier, & Cole, 1984). Improvements in functioning that occur years post-injury may be more related to learning new compensatory strategies than actual recovery of brain tissue (White, 1990). The variations of resulting deficits are numerous because any area in the brain can be affected. The most obvious deficits are physical deficits, including muscle weakness, paralysed muscle groups (i.e., Vi side of the body), loss of balance function, as well as sensory deficits — vision, hearing, touch, temperature perception (Vogenthaler, 1987). Other, initially often less apparent deficits, include cognitive deficits (e.g., memory, attention, problem solving, planning, speed of information processing, judgment), language deficits, perceptual deficits, behavioural changes, and emotional changes, such as emotional labiality or flat affect. One of the most difficult residual effects of brain injury is the lack of awareness of impairments on the part of the injured person (Lezak, 1988). Such lack of awareness is related to an inability to monitor ones own behaviours and thus individuals with this type of impairment  10 are unable to recognize if they make mistakes or behave inappropriately. Many of these deficits are interconnected and compound each other. Over the months and years following the initial injury, secondary problems often develop as a reaction to the primary deficits. These tend to be behavioural, emotional, and psychosocial in nature (Prigatano, 1991). The recovery process from severe brain injury is often slow and very individual and the full extent of impairments (especially the cognitive and psychosocial effects ) and the resulting disability is often not known until a significant amount of time has elapsed since the initial injury occurred (Higenbottam, 1998a). The uncertainty about the long-term outcome is especially strong within the first days and weeks after the initial TBI. Typically, a comprehensive rehabilitation team becomes involved with the injured person immediately after the injury (Higenbottam, 1989b). This often includes a physician or neurosurgeon, nurses, neuropsychologist, psychiatrist, physiotherapist, occupational therapist, social worker, speech-language therapist, and a dietitian. Family members are therefore exposed to many different persons working with their injured family member. Demographic Information Wong, Dornan, Schentag, Ip, and Keating (1993) established a statistical profile of individuals who sustained a TBI in Canada. The site of their statistical analysis of 498 patient charts was one of Canada's largest and oldest long-term care and rehabilitation hospitals (also a teaching facility) in Toronto. The results indicated that the ratio of male to female injured persons was 3.5:1 and the majority of injuries occurred between 21 and 30 years of age. A high percentage of the men (46.9%) had less than grade 12 education and another 27% had completed high school but no further formal education. The majority of the injured men (approximately 70%) were in a low educational category (semi-skilled labour, manual labour), were either unemployed, or students. Alcohol and/or drug use are also prevalent amongst the male population with brain injury (51.3%). There were gender differences in the categories of age (women were older on average at the time of injury), educational status (higher percentage of women had post-secondary education), occupational status, and alcohol and/or drug use (women used substantially less alcohol or drugs; a total of 21.9%). Therefore the typical man who sustained a brain injury is young, uneducated, single, a manual labourer, and has a history of alcohol abuse. The typical woman who sustained a brain injury is on average four years older, better educated and "less likely to have an alcohol-associated accident" (Wong et al., 1993, p. 291). The most common causes for brain injuries are motor vehicle accidents (women are more often passengers or pedestrians compared to men), followed by falls. Other causes include sports, parasuicide, violence, and industrial accidents (Wong et al.).  11 Effects on the Family as a System Lezak (1988) aptly titled one article "Brain Damage is a Family Affair" ( p i l l ) and family members have also been called "the overlooked victims" (Zeigler, 1987). Thus, the impact of brain injury on the family and individual family members has been recognized in the literature. Frank (1994) pointed out that it is necessary to understand the dynamics of the family system in order to be able to provide effective rehabilitation for the injured person and the family members. As described above, each TBI will result in a unique combination of deficits and resulting disability. However, factors influencing the impact of brain injury on family members include not only the severity of the injury but also family cohesiveness, pre-existing coping patterns and abilities of the individual family member and the family as a unit, and pre-existing problems in the family. Research about the impact of brain injury on relatives of the injured person either focus on the main caregiver (Acorn & Roberts, 1992; Marsh, Kersel, Havill, & Sleigh, 1998; Novack, Bergquist, Bennett, & Gouvier, 1991) or describe the impact on the family by assessing the main caregiver (Allen, Linn, Gutierrez, & Wilier, 1994; Hall, Karzmark, Stevens, Englander, O'Hare, & Wrigth; 1994; Zarski, DePompei, & Zook, 1988). The difference between these two lines of research is that the first clearly states that the target is the main caregiver. In most cases this is the spouse or parent of the injured person. The second line of research uses primary caregivers as research participants but discusses the findings often in light of 'the family'. Considering that each family member is an individual and may show individual reactions to the brain injury, such a generalization from one family member to the family as a whole can convey a skewed picture. Brooks (1991) states: The injury forces major adjustments not only to the individual members of a family, but also to the way in which the family works as a system. In this view, any study of the effects of injury on a family and any appraisal of the effectiveness of clinical intervention for that family must incorporate a detailed appraisal of the whole family system (p. 156). Brooks notes that such an assessment is rarely possible and therefore we have to rely on individual family members. However, when this is done, it should be noted that the participants are individuals, not the family as a unit. In the present study, I collected the stories from one particular family member of each injured person, the person who spent most time visiting the injured person in the acute care hospital and was designated by the family as the spokes person. The information that was gained from the interviews provides some limited information about processes in the families as a unit. However, it is important to remember that even this limited information about the family as a unit is not representative of the family  12 itself because only one family member of each family was interviewed. Therefore, it is not possible to draw conclusions about the family as a unit. Experiences in Acute Care Traumatic brain injuries occur mostly without warning and in the case of severe brain injury it is likely that the injured person is initially in an intensive care unit or specialized neurological unit (Mauss-Clum & Ryan, 1981). Family members find the person, who was recently healthy, unresponsive and in a death-like state. This confrontation with the sudden, acute injury and the hospital environment is a "terrifying and stressful experience"(Hosack & Rocchio; 1995, p. 58). Family members usually have no previous experience with such a situation and have to trust strangers and faith, and hope for recovery. Feelings of shock, difficulty understanding this new situation, anxiety, guilt, feelings of responsibility, and anger at what has happened are common initial emotions (Mejis, 1989). Family members are also forced into a passive role, having to stand aside and let the professionals work at a time when their instinct is to help their loved one. They have to trust strangers, who they have never met before and with whom there will be initially little contact. Coupled with these experiences can be a sense of powerlessness and intense frustration at being powerless (Lenehan, 1986). For some families these usually ovewhelming feelings are intensified by being away from home in an unfamiliar environment and away from any support from friends, relatives, or the community. Dysfunction and disequilibrium are often experienced by the family members. A l l of the above described experiences and feelings of family members were described in discussions on various topics such as the emotional impact of trauma and care of families without providing sources for the information and are likely based on clinical experience. Only two other studies were found, that describe research projects about the experiences of family members of brain injured individuals in the early phase after the injury occurred. Johnson (1995) illustrated one family's experiences in the first week after one of their members sustained a TBI. This phenomenological study was based on interviews with each family member, including the injured person. She reported feelings of helplessness, "emotional anguish" (p. 116), and uncertainty, which seem to support the views reviewed by Hosack and Rocchio (1995), Lenehan (1986), and Meijs (1989). However, her description of this 'case' is not very detailed and it is unclear how much of it is the author's interpretation and how much was actually voiced by the family members. The main focus of Johnson's article was the existential meaning that this event had for the family, not a detailed description of their experiences. It is difficult to determine how the family made meaning from the events, and what kind of factors in the event, the family, or the environment influenced the meaning making process due to the limited information about the research method available in this study. Johnson's (1995) report also  13 neglects to outline what the position of the researcher is and how the researcher's relationship to the injured person might have influenced the understanding of the family's experience. It is therefore not possible to know whether the themes that emerged are primarily the family's view or if and how they are influenced by the researcher's preconceived ideas. Romano (1974) describes an observational study of 13 families of brain injured individuals who were already sufficiently medically stable to be transferred to rehabilitation. She suggests that families do not move through a sequence of reactions similar to the stages of grieving described by Kuebler-Ross (as cited in Romano). Rather, Romano found that the family members responded with intense denial even when counselling was provided. She also found certain common trends and forms in this denial. These included fantasies (the injured person is sleeping and will wake up some day), fantasizing measurable improvements (interpreting movement related to spasticity as voluntary movement), verbal refusal that the injured person has changed, and inappropriate responses (inability to set limits for behaviour modification, over-expectations of the injured person). Anger at the staff working with the injured person also was a common reaction attributed to denial. Romano did not discuss the possible role that denial might have played for these family members. Information about the methods used in observing, the number and relationships of the family members observed, or who took part in the observations is also not provided and the injured persons were already medically stable and had improved to the point that they qualified for rehabilitation. Although it is possible that the information described in these two studies (Johnson, 1995; Romano, 1974) reflects indeed the family members' viewpoint and their experiences, it cannot be ruled out that the descriptions are heavily influenced by the researchers' values and beliefs. This present study attempts to reduce the lack of information about the topic of the family members' experience in acute care after brain injury. The Long-Term Burden on the Family The long-term burden of brain injury on the family has been well researched over the past 20 years in Europe, North America, and other parts of the world. There are differences between the various studies in definitions (burden, subjective, or objective stress), populations (severity of injury, time since injury, family definition), procedures used (checklists and interviews developed for a specific study but with little information about psychometric properties) and the consideration of pre-trauma factors (Brooks, 1991; Livingston & Brooks, 1988). However, despite these differences, common themes can be identified and Livingston and Brooks (1988) concluded that "there can be no doubt that family burden after major head trauma is significant, however difficult it is to measure and define" (p. 13).  14 Substantial levels of psychosocial impairment have been found in many caregivers in the years following the injury (Kreutzer, Gervasio, & Camplair, 1994a; Livingston, 1987; Marsch, Keersel, Havill, & Sleigh, 1998; Novack, Bergquist, Bennet, & Gouvier, 1991). The most common problems were anxiety, depression, and reduced social adjustment often with a high degree of isolation. The numbers vary between studies but 1/3 to 2/3 of all families show clinically significant levels of anxiety or depression. In most studies, anxiety is a more common experience than depression. Some studies indicate that the level of burden does not change over time (Brooks, Campsie, Symington, Beattie, & McKinlay, 1987; Kreutzer et al., 1994a). In contrast, Novack et al. (1991) found that high levels of anxiety decreased substantially in many family members during the course of rehabilitation. Those family members who continued to show a clinically high level of anxiety at followup, three months after the end of rehabilitation, also scored high on the trait anxiety factor on the StateTrait Anxiety Scale. They posit that much of the anxiety was related to the unpredictability of TBI and the uncertainty about the future experienced by these families in the initial stages after the TBI occurred. This anxiety decreased during the course of rehabilitation as the families gained an increased understanding of TBI and became more involved in treatment. Those family members that continued to show high levels of anxiety appeared to have an overall elevated level of anxiety as a 'trait'. Unfortunately, neither of these three studies include sufficient information about rehabilitation or interventions received by the injured persons or the family and therefore it is difficult to draw clear conclusions from these differing results. Knight, Devereux, and Godfrey (1998) used questionnaires consisting of a combination of several self-report measures about the effects of caregiving, depression, symptoms of distress, social support, coping, and demographic information to document which aspects of caregiving are stressful (i.e., a 'burden'). Stressful aspects included behavioural changes in the injured person, guilt about negative feelings experienced as a result of these behavioural changes, worries about the future of the injured family member, physical and emotional exhaustion as a result of caregiving, and the loss of independence. They also attempted to investigate the relationship between coping satisfaction, perception of social support, and symptom appraisal and adjustment. The results indicated that the level of satisfaction of caregivers with their own coping responses was an important predictor of the level of stress/burden experienced by them. Living with the burden of TBI can lead to frustration, resentment, and isolation. Family members may experience negative feelings such as frustration or anger about the personality and behavioural changes of the injured person, which often leads to guilt. Several studies also found social isolation of the injured individual and his/her family to be a result of the TBI (Knight et al., 1998; Zarski, DePompei, & Zook, 1988). Kozloff (1987) reported a  15 reduction in social network size of the injured person over time. Family members attempt to compensate for the loss of social relationships, thus the density of relationships increases. Family members become the main source for support of any kind be it social, financial, task oriented (e.g., helping with household), or coping oriented (e.g., listening, supporting). Although this tendency was noticed with all families, it was strongest in families where the injury suffered was severe. As a result of such increased support to the injured person by the family members, they themselves become isolated. This isolation occurs, because of fatigue, feeling emotionally drained, and having less time for other activities (Knight etal., 1998). There remains some disagreement whether parents and spouses experience different levels of stress. However, the overall trend in more recent studies indicates that spouses experience a higher level or different nature of stress than parents (Hall et al., 1994; Kreutzer, Gervasio, & Camplair, 1994a; Leathern, Heath, & Wooley, 1996). Allen, Linn, Gutierrez, and Wilier (1994) compared the subjective burden experienced by spouses and parents of individuals with TBI. Subjective burden was defined as "any event or circumstance that appears likely to increase frustration, lack of support, or being prevented from achieving goals" (Day & Alston as cited in Allen et al., 1994, p. 31-32) and was measured through several questionnaires that evaluate areas of disability experienced by the person with TBI, and psychological distress and perceived stress of the caregiver. They found that the experience of burden was "on the whole" (Allen et al., p. 39) not different for spouses and parents. However, there were differences in specific types of burden. Parents were more concerned with the lifelong care of the injured person, while spouses experienced less reward than parents. Spouses also reported a greater degree of isolation and lack of support from other relatives or friends. The stress described by spouses was overall more emotional than that of parents, who were more concerned with instrumental and organizational issues. They concluded that the differences between spouses and parents are more qualitative in nature than quantitative. Lezak (1988) pointed out, based on clinical experience, that parents, spouses, and siblings or children of persons with TBI react differently and experience different levels of burden. Few researchers have evaluated the stress experienced by siblings and children. Lezak contributed the higher level of stress often found in spouses to various factors such as: (a) parents are resuming a former role, while spouses are assuming a new one; (b) parents may have more support in their partner, whereas spouses loose that support to the injury; (c) parents may experience less financial disruption; (d) spouses may be more affected by the behavioural changes than parents. Acorn and Roberts (1992) discussed information gained from questionnaires that are part of a larger study concerning needs of family members and the usefulness of support groups. They collected information about demographics, situational influences,  16 and causes for worry, as well as educational, psychological, and stress management needs. They identified four major themes: role changes, emotional impact of the injury, concept of hope, and need for support. Themes expressed by wives were not compared to those expressed by parents, but the information obtained by wives in this study does support Lezak's (1988) suggestion that greater difficulties are experienced by spouses. The research about differences of stress on parents and spouses of individuals with TBI has focussed on the long term effects of TBI on family members. It remains unknown, if there are differences in the experiences of parents and spouses in the acute phase after the injury occurred. Factors discussed by Lezak (1988), such as role changes, differences in level of support, behavioural changes in the person with TBI, and financial disruption may not occur until some time after the injury. On the other hand, these factors may not be attended to and experienced as stressful initially because the family members focus on the immediate concerns of survival and recovery. Marital adjustment is also affected by TBI, especially when the injured person is a spouse. Wood and Yurdakul (1997) found in a pilot study that 58% of their participant families separated or divorced after the injury. This number increased to 89% if the injury was severe enough for the injured person to require rehabilitation. Peters, Stambrook, Moore, and Esses (1990) found high levels of marital dysfunction in the areas of diadic consensus, affectional expression, and overall adjustment. Greater amount of disagreement, difficulty reaching joint decisions, and less overt acts of physical and verbal affection were reported. A later study found that it was primarily the group of severely brain injured persons whose marital adjustment was reduced compared with mildly brain injured or spinal cord injured persons (Peters, et al., 1992). However, no data were collected in this study about marriages or relationships that had failed since the injury occurred because the focus of this study was on relationships that were still intact. The main strain on the marital relationship was caused by behavioural and personality changes in the person with severe TBI (as opposed to cognitive or physical impairments). Another question that has been discussed in the literature is concerned with specific factors that influence perceived burden, stress, and marital problems. One of the earliest studies (Oddy, Humphrey, & Uttley, 1978) found that the level of perceived stress was not influenced by the length of hospitalization, degree of physical disability, and severity of injury, but rather by the level of personality change and the family member's perception of symptoms. These findings have been replicated in later studies (Cavallo, Kay, & Ezrachi, 1992; Kreutzer, Gervasio, & Camplair, 1994b; Lezak, 1988; Wilier, Allen, Liss, & Zicht, 1991). Knight, Devereux, and Godfrey (1998) discussed that mood disturbances (including labiality, anxiety, and depression), anger (i.e., irritability, being easily upset) and  17 irresponsibility on the part of the injured person are most distressing. These changes in behaviour and the display of often inappropriate behaviour for a given situation seem to be even more distressing because the injured person often is unaware of these inappropriate behaviours and changes and therefore does not easily respond to requests for change (Thomsen, 1974). This unawareness, however, is frequently also a direct result of the brain damage sustained in the original injury and therefore is difficult to change or influence. Many studies, therefore, have attempted to define and assess the burden on families of persons with brain injury. In summary, the burden on the family is largely related to personality changes of the injured person and the perception of symptoms by family members. Isolation further compounds this burden because family members have increasing difficulty to access support within the social network. The burden often results in psychosocial impairments such as anxiety, depression, or reduced social adjustment. Spouses seem to be differently affected by this burden than parents. Most of these studies have taken a long-term view and assessed families at various times between one and seven years postinjury (Brooks, 1991; Brooks, Campsie, Symington, Beattie, & McKinlay, 1987; Knight, Devereux, & Godfrey, 1998; Marsh, Kersel, Havill, & Sleigh, 1998; Zarski, DePompei, & Zook, 1988). Studies that looked at the more immediate impact (three months post-injury) of brain injury on the family identified that the stress experienced by family members at this time is already high (Livingston, 1987; Livingston, Brooks, & Bond, 1985; McKinlay, Brooks, Bond, Martinage, & Marshall, 1981; Novack Bergquist, Bennett, & Gouvier, 1991; Oddy, Humphrey, & Uttley, 1978). Livingston et al. (1985) discussed that there is a "measurable psychiatric and social impact on the relatives" (p. 873) within 3 months postinjury, including mood disturbances and social role dysfunction in the home. Anxiety was a prevailing factor in all of these studies. Novack et al. (1991) contribute the anxiety in the early phase after the injury to the uncertainty of the outcome of brain injury in the initial phase. Uncertainty of outcome of the brain injury, however, leads to uncertainty about the future in all aspects of the family members' life. The question that needs to be addressed is whether there is a possibility in the early stage of recovery to assist the family members in their adjustment to TBI and therefore their long-term coping and health. Adjustment and Adaptation Several stage models have been proposed to describe and understand the processes of the family's adaptation to TBI (Grovemen, & Brown, 1985; Henry, Knippa, & Golden, 1985; Lezak, 1986; Spanbock, 1987). However, there are several problems with these models such as lack of empirical evidence that families actually move through clear stages, and inadequate explanations of irregularities in movement through the stages (Rape, Bush, & Slavin, 1992). These stage models also treat the family as a "monolithic whole, not as an internally dynamic group of individuals" (p. 12). They suggest that a  18 model based in a systems perspective is more adequate to describe adaptation processes than a stage model describing a set sequence of stages. The Resiliency Model of Adjustment and Adaptation (McCubbin & McCubbin, 1993) might provide a useful framework for understanding the process of adaptation to brain injury in a family. This model was developed out of Hill's A B C X model of stress and coping (Hill, 1949). The model evolved through several phases such as the Double A B C X Model (McCubbin & Patterson, 1983a), the Family Adjustment and Adaptation Response (FAAR) Model (McCubbin & Patterson, 1983b), and the Typology-Double A B C X Model of Family Adjustment and Adaptation (McCubbin & McCubbin, 1989). The Resiliency Model provides a comprehensive framework that includes factors such as established patterns of family functioning, problem solving and coping processes, family systems functioning, and several levels of appraisal — schema, coherence, paradigms, situational appraisal, and stressor appraisal (McCubbin, Thompson, & McCubbin, 1996). The model divides the process of adaptation of a family to a sudden stressor into two phases, the "Adjustment phase" and the "Adaptation phase" (McCubbin et al., 1996, p. 5-36). A family does not have to move through both phases in order to cope successfully with the demands of the sudden stressor. The second phase occurs only if the family is not able to adjust to the stressor and therefore eventually experiences a crisis. The model is designed to apply to normative as well as non-normative stressors. A stressor is any demand on the family that has the potential, or threat, of change in the family by disrupting the harmony and balance for which the family system strives. In the Adjustment Phase the family will initially attempt to restore and maintain balance through "minor adjustments and changes in the family system and its patterns of functioning" (McCubbin et al. 1996, p. 17). The outcome of these minor adjustments depends on a variety of factors, and either results in "Bonadjustment" (p. 21), in which the family is able to restore its balance without major adjustments or "Maladjustment" (p. 21), which requires more substantial changes in the family system in order to restore stability. Major traumas (such as TBI in the family) frequently lead to initial maladjustment and the necessity for significant changes. The family therefore moves into the Adaptation Phase, which results either in bon- or maladaptation. There are several variables interacting in the family's attempt to adjust to the initial stressor in the early phase (McCubbbin et al., 1996). These include: (a) the families vulnerability at the time of the main life stressor (TBI) which is the result of a pile-up of demands prior and concurrent to the new stressor (stresses, transitions, strains, and the normal pressures associated with the family life cycle); (b) the family typology (behavioural and interactional patterns of the family in response to demands); (c) family resistance resources (individual, family system, community); (d) the family's interpretation of the  19 stressful event; and (e) the family's repertoire of problem solving and coping responses (p. 16). A l l of these factors interact with each other in the family's attempt to adjust to the stressor event and lead to either bon-, or maladjustment. "Bonadjustment" (McCubbin, Thompson, & McCubbin, p. 21) is characterized by the maintenance of existing functioning patterns and a sense of control over the stressor, whereas "maladjustment" (p. 22) leads to deterioration in family functioning and development and finally crisis. Severe stressors such as major traumas or catastrophes, frequently lead to significant hardships that overwhelm the family and prevent bonadjustment without substantial changes in the family. Often a crisis occurs that leads the family into the adaptation phase. Families that are in a crisis state are unable to restore stability and often rely on trial and error to reduce tensions and manage demands (McCubbin et al., 1996). Often there is also an inability or resistance to give up established patterns and to make changes when these are necessary to improve the family's functioning. "Adaptation" (McCubbin, et al., 1996, p. 26-27) is the outcome of the family's efforts to create a new level of balance, coherence, and a satisfactory level of functioning after a crisis occurred. The family is successful at reducing or managing the demands placed on them by the TBI. This usually necessitates changes in the family system itself, including changes to "roles, goals, values, rules, priorities, boundaries, and overall patterns of functioning" (p. 21). This phase is also influenced and determined by similar factors as in the adjustment phase. However, the scope of the factors is widened and some additional factors are included such as the family's schema (worldview). In short, the variables in the adaptation phase consist of the pile-up of demands (pre-stressor and consequences from attempts to cope with the original stressor), the family type and strengths, the appraisal and meaning making of the situation, the family's schema (worldview), the family's support system (friends, community), and the family's problem solving and coping responses to the total family situation (McCubbin et al., pp. 23-24). As in the adjustment phase, all of these factors influence each other and the end result lies again on a continuum between good adaptation and an inability to adapt to the new situation. At this stage of the overall process of adjustment and adaptation, bondadaptation is characterized by balance and harmony between individuals, individual and family, and family with the community. In maladaptation, an imbalance remains at any of these levels (or all). This can lead to deterioration of an individual member's health and development and deterioration of the family unit, autonomy, and ability to accomplish normal life tasks. In summary the Resiliency Model (McCubbin, Thompson, & McCubbin, 1996) consists of two phases (adjustment and adaptation) in which similar variables influence how the family reacts with the initial stressor and longer term consequences of it. Although similar variables play a role in both phases, there are differences in the scope of these and the length of time involved. The adjustment phase does not  20 necessarily lead to significant changes in the family, while successful resolution of the adaptation phase requires changes to the family patterns of functioning. It is not necessary for a family to move through both phases although, according to this model, it is common that families are not able to adapt successfully to a significant stressor such as a TBI in their first attempt at adaptation and therefore move into the second phase that involves more substantial changes to their interactions, coping patterns, their world view, or their appraisal of situations. The model has been developed and changed over time and has apparently been tested with families who encountered a variety of illness related and other stressors, such as child sexual abuse, substance abuse, and rape (Figley, 1989). However, it is only recently that this model has been evaluated for the brain injury population. Kosciulek, McCubbin and McCubbin (1993) suggest that the existing family and community resources are insufficient for most families to adjust well to TBI. Therefore, most families will move through the adjustment phase into crisis and then the adaptation phase. The adjustment phase occurs primarily in the acute phase after an injury occurs (acute care hospital, rehabilitation), whereas the adaptation phase involves the long-term struggle of the family to manage this new situation and the ongoing effects of the injury. Brain injury is a long-term issue that interacts with other demands and therefore cannot be dealt with in isolation. Hardships associated with brain injury are often far reaching and involve individual family members as well as their relationships. Some of these include the ambiguity and uncertainty surrounding the injury, the long-term outcome of the injury, strain and conflicts between family members, and financial hardship (Brooks, 1991). In addition to learning to live with the brain injury, the family needs to continue to deal with other normative transitions and with changes to expected normative transitions due to the injury (dePompei & Zarski, 1991). The family also is faced with new and often frustrating situational demands as a result of being exposed to the hospital and insurance systems (Brooks, 1991). Coping patterns that were initially appropriate, such as suppression of feelings or adherence to rigid routines may become maladaptive and the family feels the negative effects of their own coping attempts (Kosciulek et al., 1993). Finally, the family unit and its support network are also faced with significant changes due to the chronic nature of the injury related deficits and, therefore, often need to change their patterns of relating. Strengths, resources, and capabilities of the individual, the family system, and the community are often severely taxed by the effects of the brain injury. Kozloff (1987) found that the support network of families of brain injured persons decreases in numbers over time and increases in density. Each person within the network also begins to take on a multitude of functions such as providing emotional as well as task-focussed support. The main providers of support are the closest family members and this ultimately  21 leads to isolation of the injured person and the family. Friends and other relatives tend to reduce their involvement once the early phase of rehabilitation and recovery is over and the true nature of the deficits becomes more apparent. How families interpret the injury is a crucial factor in their ability to cope. Appraisal is closely interwoven with the family schema (world view), which indicates how families view their past experiences in a more global sense. The first studies to evaluate this model empirically in the area of brain injury have looked at coping strategies (Kosciulek, 1994), identification of family types (Kosciulek, 1995), and family schema (Kosciulek, 1997). Kosciulek (1994) used a combination of questionnaires and rating scales (some developed for this study, some frequently used in related research) to identify specific coping strategies used by family members and to assess if these coping strategies can predict successful adaptation of the family. The main caregiver was used in this research. One weakness in this study (as with the majority of related research) is the extrapolation from the individual family member to the family as a unit without discussion of possible problems with this approach and without sufficient information about the instruments to determine if they are suitable for such a use. He identified five clusters of coping strategies in families after TBI that he named: (a) positive appraisal (the family views the injury as a manageable challenge not as an unmanageable catastrophe), (b) resource acquisition, (c) family tension management, (d) head injury demand reduction, and (e) acquiring social support. A l l five strategies correspond to effective coping strategies identified in research on the Resiliency Model with other populations. Positive appraisal and tension management were most strongly correlated with a good adaptation to TBI. He concluded that certain coping strategies could be predictive of bonadaptation in the family of a person with TBI. A n extension of this study revealed different family types that seem to be also predictive of mal- and bonadaptation (Kosciulek, 1995). A third study was concerned with evaluating the relationship between family schema and adaptation to brain injury (Kosciulek, 1997). The family's set of "beliefs, values, goals, priorities and expectations in relationship to each other and to the larger community" (p. 827) influenced its view of the injury in terms of manageability and meaningfulness. The family's ability to find meaning in the events and their expectation of demands to be manageable affected their long-term adaptation to TBI. A l l three of these studies seem to predict the utility of the Resiliency Model for understanding and predicting adaptation processes after brain injury. However, these results are preliminary results from a few exploratory studies with a restricted participant population (e.g., volunteers, few minorities) and these studies mainly addressed long-term adaptation. There are no studies available that look at the adjustment phase after one family member sustained a TBI and possible factors that might enhance adjustment and movement into long-term adaptation in this early phase. I wonder if the family could  22 potentially resolve the adjustment phase or immediately move into the adaptation phase following the initial shock without having to face a crisis, and conditions would have to exist for this to occur. Needs Assessment Needs of families of critically ill persons have been the focus of much research and two branches of research can be identified: (a) needs of family members of critically ill patients with or without brain injury in Intensive Care Units (ICU) (Bernstein, 1990; Engli & Kirsivali-Farmer, 1993; Mathis, 1984; Molter, 1979; Stover Leske, 1992), and more recently, (b) needs of family members of brain injured persons in the long-term, after the initial phase of hospitalization (Devany Serio, Kreutzer, & Gervasio, 1995; Kreutzer, Devany Serio, & Bergquist, 1994; Serio, Kreutzer, & Witol, 1997). None of these studies specifically concern those families whose injured member remains in an acute care setting for an extended period of time. A l l of the needs assessments in the ICU settings use the same questionnaire with some variations and are based on Molter's initial study (1979). The Critical Care Family Needs Inventory (CCFNI, Molter, 1979) consists of 45 items grouped into five categories: assurance, proximity, information, comfort, and support. The items are rated by relatives of critically ill patients on a 4-point scale. The statements were initially selected from responses to a structured interview with graduate nursing students and from a literature review. This instrument has been widely used in the nursing literature, but it is difficult to compare results because of lack of information about the setting, visiting policies, or specific programs that might exist (Hickey, 1990) and that might influence the families' perceptions and needs. Patient samples are also not well described. Internal reliability of the CCFNI has been established through Cronbach's alphas in the range of .85 to .98 (Mathis, 1984; O'Neill-Norris & Grove, 1986; Stover Leske, 1986), and test-retest reliability was established through a test-retest process with a 24-hour time interval (Macey & Conner Bouman, 1991). These reliability measures show sufficient reliability. However, there are no studies that evaluate the construct validity (uniqueness or redundancy) of these 45 items through factor analyses, other than a review by the evaluation panel in Macey and Conner Bouman's study (1991). The panel felt that there may be some redundant items. Content validity is the only form of validity that has been researched to date. Molter (as cited in Macey & Conner Bouman, 1991) used a group of 25 graduate nursing students, two ICU nurses and one nurse with a relative in ICU to establish content validity in her thesis. Macey and Conner Bouman (1991) used a panel of five critical care nurse managers and 11 school of nursing faculty members, apparently with a wide range of educational backgrounds to establish content validity. Macey and Conner Bouman asked the panel to review each statement in the CCFNI to determine if it represented a need of family members in ICU and to identify if there were any redundant items. Most  23 panel members identified several redundant items and 14 of the 16 panel members felt that certain items were not 'needs'. Their objections to specific items were largely related to wording of items. The panel concluded that the content of this questionnaire was overall valid. Macey and Conner Bouman also discussed that those items that were determined not to be needs by the panel were identified by family members as important, indicating face validity. The question arises if this discrepancy is related to the different view points that family members and medical staff have. The perspective of family members does not appear to have been included in the construction or evaluation of this instrument. Some studies indicate that there are differences in the perception of the importance of needs between family members and ICU nurses (O'Neil Norris & Grove, 1986; Jacono, Hicks, Antonio, O'Brien, & Rasi, 1990). The results of the CCFNI (Molter, 1979) need to be used cautiously considering the lack of sufficient validity information. Another concern is the age of this tool and the lack of re-evaluation of its appropriateness to the present ICU settings. Nevertheless, all of these studies reached the same conclusions and these conclusions intuitively make sense. Information, and to a lesser extent, assurance needs, were consistently cited as the most important needs identified by family members. Support and comfort were usually ranked in the least important categories. Several studies reported that every need was at least once categorized as "very important" or "important" by families (Bernstein, 1990; Mathis, 1984; Molter, 1979). Other important needs were the need for honest answers to questions, to receive specific facts about prognoses, and to feel hope. The least important needs were to feel accepted by hospital personnel, to have a telephone near the waiting room, and to talk to a nurse each day. Most of the studies included a wide variety of illnesses and diagnoses but two studies attempted to establish whether family members of patients with TBI would identify different needs (Engli & Kirsivali-Farmer, 1993; Mathis, 1984). Both studies found statistically significant differences but concluded that these differences were very small and that an examination of the data showed more similarities than differences. Again, the question arises, if this assessment is accurate considering that validity in any form has not been well established yet. Another question that remains unanswered is whether the needs might change over time while the injured person remains in a hospital. Kreutzer and his associates (Kreutzer, Devany Serio, & Bergquist, 1994; Devany Serio, Kreutzer, & Gervasio, 1995; Serio, Kreutzer, & Witol, 1997) have more recently attempted to develop a new needs questionnaire, the Family Needs Questionnaire (FNQ). Although the methodology in these three studies is more sound, problems remain. This questionnaire is also based on the above described CCFNI combined with information from clinical interviews. As discussed earlier, however, the CCFNI needs to be cautiously considered because there is insufficient evaluation of various forms of validity. Although clinical interviews consider the families' view point, they may not be the best method to elicit  24 information from families. Clinical interviews are different in nature from qualitative interviews designed to hear the story and opinion of the individual. They often are controlled by the interviewer through selectively focussing on issues and comments that are considered relevant by the interviewer and by inattention to information considered unimportant by the interviewer (Mishler, 1984). Questions are worded to allow only for narrowly focussed answers and leading questions might occur that confirm what the clinician expected in the first place. Although Mishler's study (1984) focussed on medical interviews, he concluded that this type of interviewing is not unique to medical interviews but also occurs in any situation where the goal is to elicit information for assessment, diagnosis, or selection. None of the studies using the FNQ provide information about the nature of interviews used or if the information was validated through such methods as member checks. These latter studies also show that the most important group of needs is the need for information. These studies differ in so far as the needs for emotional support, instrumental support, professional support, and community support networks are also considered to be important by family members. In the ICU stage, the needs for emotional and instrumental support were consistently ranked lowest. Freichels (1991) concluded that families initially focus on the crisis and attempt to reduce stress and uncertainty through seeking assurance and information, while ignoring self-care tasks. However, another possibility might be that the families make a deliberate attempt to appear normal and act as i f they were coping while in the presence of health care professionals or at the bedside and try to 'hide' their fear, anxiety, and inability to cope ("command performance syndrome", Sbordone, Krai, Gerard, & Katz, 1984, p. 185). In this study, family members were found to appear normal and to score only slightly higher than normal controls and lower than psychiatric patients on a standardized self-report instrument that is sensitive to various forms of psychological distress. However, once these family members became more familiar with the professionals, they admitted that they deliberately tried to appear "strong" (Sbordone et al., 1984, p. 185) while in the hospital, but "fell apart" once they reached their homes. Sbordone does not discuss possible reasons for this behaviour of family members but one possibility is that maintaining calm and controlled behaviour while in the hospital is a form of coping by the family members. Sbordone points out that family members who don't show their emotions were not considered for psychological counselling, although they may have benefited from it. In summary, studies in the initial acute phase after the injury and studies concerning the longterm needs of families show similarities in so far as the need for information ranks highest amongst all needs, but differ in the importance ascribed to emotional needs and support needs. Considering the possibility for a "command performance syndrome" as described by Sbordone et al. (1984, p. 185), the questions arise whether the needs of family members in the acute stage have been accurately assessed  with the use of the CCFNI and if needs of family members change over time. The studies addressing needs in the acute phase after injury all focus on the first 2 to 3 days in ICU. At this time, it is possible that family members are unable to focus on their own needs in addition to worrying about their loved ones. This might change over time with extended exposure to the injury and the medical environment and the realization that their injured family member will not be healthy within a short period of time. However, to date there is no literature that addresses the experiences and possible changes in needs of family members of brain injured persons that experience the acute care environment for more than a few days. Summary of Literature Review As can be seen from the literature review, much research has occurred in the past 15 to 20 years on various aspects of brain injury and the family. The experiences of families in the initial phase after the injury have been discussed by several authors (Hosack & Rocchio, 1995; Johnson, 1995; MaussClum & Ryan, 1981), but little empirical research exists. These experiences have been characterized as confusing and anxiety provoking and generally stressful. The long-term-burden on the family has been well documented (Brooks, 1991; Livingston, & Brooks, 1988). Psychosocial problems such as anxiety, depression, reduced social adjustment, and social isolation as well as a high rate of separations and divorce are common amongst caregivers of brain injured persons (Kreutzer, Gervasio, & Camplair, 1994a; Livingston, Brooks, & Bond, 1985a; Wood & Yurdakul, 1997). Spouses seem to be more severely affected than parents, but disagreement remains on this point. To date, much of this research has occurred without a guiding theory or model. Only recently the Resiliency Model of Family Stress, Adjustment and Adaptation (McCubbin & McCubbin, 1993) is beginning to be assessed for its utility with the brain injury population and their families. Preliminary results suggest that there are certain coping patterns and family types that foster and are predictive of bonadaptation to brain injury and that family schema influence how the family views the impact of the injury (Kosciulek, 1994, 1995, 1997). Finally, the needs of the family of brain injured persons have been researched in intensive care, and months to years post-injury. These studies indicate that the need for information is consistently rated high by family members in ICU as well as months or years post-injury. The emphasis on other needs seems to change over time, with an increased importance on emotional, instrumental, and professional support over time. Most of these studies are based on the CCFNI or adaptations of it, a questionnaire that was initially developed by Molter (1979). The psychometric properties of this questionnaire are uncertain and therefore, the results of these studies need to be interpreted cautiously and further research is needed.  26 The literature about needs o f family members as well as the long-term burden experienced by families o f brain injured persons provides a consistent picture o f the difficulties faced by family members o f brain injured persons. These different lines o f inquiry contribute to our understanding o f the issues that the family or family members o f a person with T B I are facing but gaps in the research still exist. The main gaps that were identified consist o f the lack o f information about the experiences o f family members in the early phase after the injury, specifically while they are still in an acute care facility, and the lack o f research that would add the voice and viewpoint o f a family member directly.  27 C H A P T E R III: M E T H O D SECTION Research Strategy A multiple case study design was used in this study. Case study designs are well suited to explore phenomena about which there is little empirical research (Yin, 1994).They are also the method of choice when "the focus is on a contemporary phenomenon within some real-life context" (p. 1). A case study requires a "specific, unique, and a bounded system" (Stake, 1994, p. 237) for its unit of investigation. A multiple case study design uses "replication logic" (Yin, p. 45) in which each case is treated as an independent unit of investigation and analysis. The individual cases are than compared and a "cross-case conclusion" (p. 49) is drawn about the phenomenon under investigation. This type of research design strengthens the conclusions drawn providing the phenomenon is not a rare or unique case. A multiple case study design appeared to be the most suitable for this study because there is no research yet about the early experiences of family members of brain injured individuals. Furthermore, case studies investigate phenomena within their real-life context and are therefore well suited to explore the subjective experiences of individuals. Existing (quantitative) studies primarily objectify the person and remove the 'object' of inquiry from the everyday context. There is a lack of studies that consider the subjective experiences of the individual family members of brain injured individuals. However, the "real world of clinical practice" (Miller & Crabtree, 1994, p. 341) involves "intentions, meanings, intersubjectivity, values, personal knowledge, and ethics." Information gained through a case study approach can bridge the gap between objectively investigated phenomena and the practical application of research information in clinical practice. The criterion of the unique and bounded system was met by focussing on the experience of family members of brain injured persons within a specific time period, the early phase after the injury, while the injured person was in acute care. The interviews with the family members were scheduled as close as possible to the discharge date but no later than four weeks post-discharge to ensure that the family members were still able to describe their experiences in acute care without their memories being changed substantially by new experiences in a rehabilitation setting. The multiple case study design was chosen because it can strengthen the results of one case study through comparison of several cases. Replication in the form of the use of multiple cases could show if the experiences of these family members were highly individual or followed a more uniform 'phenomenological' pattern. Each family member representing one family was seen as a 'case'. The exact number of cases that were investigated was determined by the results of the interview analysis. Recruitment of family members continued until  28 it became apparent, that there was great consistency and overlap among the themes found in the interviews. "Saturation" in the form of "repetition in the information obtained and confirmation of previously collected data" (Morse, 1994, p. 230) became noticeable after the fourth interview. Although the original goal was to interview at least 6 family members, it was decided to discontinue recruitment once saturation became first noticeable because of difficulties in recruitment and time limitations. Case studies often rely on multiple sources of information to investigate a phenomenon as fully as possible (Yin, 1994). In order to gain a comprehensive understanding of the phenomenon investigated, I visited the four different units where the experiences of the participants in this study occurred (Intensive Care Unit, Neurological Intensive Care Unit, Step Down Unit, and the Neurosciences Ward) at the local hospital from which participants were recruited. I also interviewed several staff members from different disciplines (nursing, physiotherapy, occupational therapy, social work). This information provided a general sense of the environment in which the family members' experiences occurred and increased my overall understanding of the phenomenon investigated. The information gained from the visitation of the four units and the interviews with staff members was summarized under the heading "Description of the Setting" (p. 44). Participants Selection Criteria Two separate sets of participants were recruited for this study: (a) family members of severely brain injured individuals in order to hear their stories and understand their experiences, and (b) staff members in order to gain a clear understanding of the environment in which the family members' experiences occurred. The focus of this study was the description of experiences in acute care of the 'spokes person' of a family with a person with severe TBI. The study was restricted to family members of severely injured persons with a Glasgow Coma Scale of eight or below (see 'Definition of Terms', p. 6). A score of eight or less indicates a severe to very severe injury and the patient is usually comatose for some time. This group was chosen as the focus of this study because these injured persons are most likely experiencing a longer stay in acute care (several weeks) and might also be the most likely candidates for specific psychotherapeutic intervention in the future. Less severely injured persons are likely to be discharged into rehabilitation or home within days to 1 to 2 weeks. Therefore, these families are likely to have somewhat different experiences than the families of the severely injured patient, which is the focus of this study.  29 Participation was restricted to family members who are sufficiently fluent in English in order to be interviewed and to express their experiences. Although this approach possibly excluded minority members, hiring of professional translators was not possible within the scope of this study. Translation also would possibly have increased the risk of misrepresentation of the family members' experiences. A final restriction for participation was location. The family members needed to reside within the Lower Mainland or the Southern part of Vancouver Island so that they would be able to attend the focus group at the end of the study for the purpose of conducting member checks. Families that qualified for the study based on the above outlined restrictions were asked to identify as a 'spokes person' the family member who was the person with the main involvement with the injured person during the hospital stay. No effort was made to recruit equal numbers of spouses and parents, or only one or the other, although these two groups of family members might have different experiences, considering the reported differences between spouses' and parents' burden (Hall et al., 1994; Kreutzer, Gervasio, & Camplair, 1994a; Leathern, Heath, & Wooley, 1996) because of limitations in time and finances in this exploratory study. However, the distribution of participating family members consisted of an equal number of spouses and parents by chance. No effort was made to find equal numbers of male and female participants either for the same reasons. The distribution was three women to one man by chance. A second set of participants was interviewed to gain an understanding of the environment in which the family members' experiences occurred. One participant from each of the main professional groups caring for and treating individuals with severe brain injuries was interviewed (occupational therapy, physiotherapy, social work, nursing). The selection criteria for these interviewees were that they had worked on the Neuroscience Team for at least 1 to 2 years and were fluent in English. Recruitment Participants (family members, professionals) were recruited at a large teaching hospital in British Columbia, Canada. This acute care facility is presently the main centre in the province of British Columbia for acute trauma care, especially TBI. Although this site is not representative for all acute care hospitals within British Columbia, let alone Canada, it is best equipped to treat severely injured persons in this province and therefore it offers the largest number of admissions of patients with severe traumatic brain injury. Permission for recruitment was obtained from the hospital's ethics committee. One team member on the Neuroscience Team agreed to be the contact person for the researcher. This team member assisted in recruitment of appropriate staff members for the informational interview as well as with the recruitment of the family members. A general request was put out to the staff members  30 during an inservice at which the researcher provided information about the study to the Neuroscience Team. Several team members (occupational therapy, physiotherapy, social worker) volunteered and interview dates were set. On that day there was no volunteer from nursing available, and therefore the contact person searched for a volunteer from nursing at a later date. The contact person also identified families whose family member fulfilled the selection criteria and was close to discharge from the hospital. This contact person (or another staff person designated by the contact person) presented the family member, identified by her as the main contact person, with a written invitation to participate in the study (Appendix A) once a discharge date for the injured person had been decided on by the hospital staff. The family member who was presented with the invitation had a choice of either contacting me through the phone number given in the invitation or giving consent to my contact person to disclose their name and phone number to the researcher. A l l four family members chose the second method. I contacted the identified family member by phone to discuss the study in more detail, to answer any questions, to check their English skills, to clarify if the contacted family member was the most appropriate participant of this family, and to set an appointment for the interview within four weeks after the injured family member had been discharged from the acute care hospital. The most appropriate interviewee was the person in the family who spent most time in the hospital with the injured family member and who was considered by the family as the main spokesperson for the family. A l l four family members that I contacted indicated that they were the person who had spent most time in the hospital with the injured person and were willing to participate. None of the family members that were contacted as a result of receiving the invitation declined to participate in the study. Several families were not approached by the contact person during the time of recruitment because they were from other parts of British Columbia, other provinces, or even other countries. Some other family members were not approached because of a very high work load of the contact person or because the contact person felt that the family was not suitable for various reasons. These factors contributed to slow recruitment and a 7 month time span between the first and the last interview. Data Collection Case studies often rely on multiple sources of information to investigate a phenomenon as fully as possible (Yin, 1994). Data was therefore collected from several sources. In order to provide background information about the setting in which the family members' experiences occurred, the four hospital wards to which the participants were exposed were visited and four staff members from different disciplines were interviewed to learn about common routines and approaches on this particular ward, that influenced the family member's experiences. The data required to understand and analyse the  31 individual participants' experiences was collected through individual interviews with the family members, field notes taken during and after the interviews, a research journal, and a focus group discussion. Information About the Environment A l l four hospital units in which the participants' experiences occurred were visited with a contact person from the hospital in order to gain a better understanding of the environment. Basic information about the size and location of these units as well as the hospital in general was collected. The units that were visited are: Intensive Care Unit (ICU), Neurological Intensive Care Unit (NICU), Step Down Unit, Neuroscience Ward. Four staff persons from different disciplines of the Neuroscience Team (social work, occupational therapy, physiotherapy, nursing) were interviewed in order to gain a better understanding of services, and common care and treatment routines that the severely brain injured patients and their family members are exposed to. Each interview was preceded with a review of the purpose of the study, an explanation of confidentiality, time for clarifying any questions from the participants about the study, and signing of the consent form (Appendix B). The same general statement about the purpose, procedures, and context of the study was read to all participants to provide consistency (Appendix F). A l l interviews were audio-taped with the permission of the individual participant for later analysis. A l l four interviews lasted between 30 and 60 minutes. The participants were asked to describe their work, typical routines, and common occurrences, as well as challenges and joys of their work with patients with severe traumatic brain injuries and their family members in a semi-structured interview (Appendix F). Three of the four staff members were interviewed prior to the interviews with the family members, one interview occurred after all family member interviews had been completed. The information from the site visitation and the staff member interviews was summarized in the section "Description of the Setting" (p. 44). Family Member Interviews The data from the family members was collected through in-depth, semi-structured interviews (Kvale, 1996). The purpose of this approach was to "obtain descriptions of the life world of the interviewee with respect to interpreting the meaning of the described phenomenon" (pp. 5-6). The interviews with family members began with a review of the purpose of the study, an explanation of confidentiality, time for clarifying any questions from the participants, and signing of the consent form (Appendix C). The same general statement about the purpose, procedures, and context of the study was  32 read to all participants in order to provide consistency (Appendix G). A l l interviews were audio-taped with the permission of the individual participant. A l l four interviews of family members occurred within four weeks after the injured person's discharge form acute care. Two family members were interviewed within days after the discharge, two family members were interviewed 3 to 4 weeks after the discharge. The goal of the interviews with the family members was to hear the family members' stories and to gain an understanding of their experiences and meaning making processes. This type of information is subjective and more strongly influenced by the individual's interpretation. Any interview is "a joint product of what interviewees and interviewers talk about together and how they talk with each other" (Mishler, 1986, p. vii). It is a form of "discourse" (p. vii). Meaning is constructed jointly but the construction is influenced by several factors, including the power dynamics between the interview partners, the setting, and individual assumptions, values, and beliefs. It is important to address these factors in order to allow the voices of the interviewees to emerge and to create the participant's stories in depth and detail. The goal is to understand the experiences of the family members from their own view point and to jointly construct a description of this experience. M y own (the interviewers) assumptions, values, and beliefs emerged through the continuous journal that I kept throughout the preparation for this study, the data collection, and the data analysis. I reviewed my own assumptions before each interview to increase my awareness of these assumptions and to increase the likelihood of containing my own assumptions in the interview process. I primarily followed the lead of the participants although specific questions were also asked to ensure a full exploration of the experiences of the family members (Appendix G). The emergence and description of the personal world and the meaning of the experience to the participants were fostered through the use of counselling skills such as active listening, summarizing, paraphrasing, and clarifying. For example, "so would you say that for you, having had at least some - although different - some kind of hospital experience, that this helped you in terms of getting through this [experience] and not fall apart?" This type of response helped the participant clarify what factors might have played a role in this participant's reactions and behaviour. Reflection of feelings such as "so it was a sad sense of helplessness?" helped the participant to clarify emotions experienced in the past. Although it is difficult to eliminate the power imbalance inherent in the status of participant and researcher, it generally can be reduced through the choice of setting of the interview, the structure of the interview (open-ended), and respectful demeanor of the interviewer. The participants were asked to determine whether they would prefer to be interviewed in their own homes or in a room provided by the  33 interviewer at her own office or the University of British Columbia. Two participants chose to be interviewed at the interviewers office, two participants preferred to be interviewed in their own homes. The interviews continued until each participant felt that they had been able to fully express and describe their experiences. The interviews with the family members lasted on average three hours. Family members were also asked to provide some demographic information at the end of the interview (Appendix E). The goal was to transcribe and analyse each family interview before the next interview would be scheduled. This would have allowed the integration of relevant topics that emerged in one interview into the next interview and fostered in-depth exploration of the experiences and meaning making processes of the participants. This procedure was followed with the first two interviews. Time constraints and logistics did not provide sufficient time between the third and fourth interview for transcription and analysis of the third interview. Some time was spent in reviewing the third interview to determine i f significant additional topics had emerged in addition to the knowledge gained in the first two interviews. Research Journal I kept an ongoing journal in which I described the study processes, and my own values and beliefs as they emerged during the process of designing and implementing this study. The purpose of the journal was to raise my awareness of these throughout the data collection and interpretive stages of this study. The use of this journal increased my own awareness of any preconceived ideas that originated from my past work in the area of brain injury rehabilitation, and thoughts, reactions, and feelings that were associated with the topics of TBI, the family, and the medical system. I read my own notes before each of the four family member interviews to be more aware of my own ideas and feelings and through this awareness to be able to contain these to a greater extent in the interview process. I also reviewed my notes repeatedly during the analysis of each family member interview in order to question my own interpretation and to gain clarity if themes that I identified were my own interpretations or part of the individual's actual experience and story. Field Notes Field notes were taken sparingly during the interviews as well as immediately afterwards. The aim of these notes was to describe processes in the interview that could not be easily capture in audiotaping such as the body language of the participant, and thoughts and comments by myself during and after the interview. This information was used during the analysis of each interview to gain further clarity of individual reactions of the interview partners.  34 Focus Group A focus group was conducted, composed of the family members who were interviewed individually. Participation in this group was voluntary. A l l four participants were willing to attend, but one participant was not able to attend on short notice. Focus groups are a type of group that encourages the discussion of a specific topic by individuals who do not know each other (Morgan, 1988). When they are combined with other research methods such as individual interviews, they increase the tmstworthiness of a study. The purpose of this group was to provide the researcher with a means to check the results of the analysis with the participants and to revise conclusions if new or alternative information emerged (Denzin, 1989). Issues and themes that emerged during the interview analysis could be clarified and further explored and thereby the researcher's voice and influences from the researcher's values and beliefs could be further reduced. Another benefit of a focus group in this context was the learning opportunity for the participants through hearing others' stories, and the possibility for creating support through meeting with others who have been exposed to the same experiences. One single focus group was sufficient as a follow-up to the individual interviews for the purpose of obtaining member checks because of the small number of family members. This focus group interview was audio-taped and used as part of the findings in this research. Focus group feedback was incorporated into the analysis of the data. The group was situated in a room at the University of British Columbia. The researcher discussed initially the purpose of the group as outlined above, basic rules of interaction in the group such as respect, confidentiality, refraining from judgement, and the right to not answer questions or share personal information. The family members were encouraged to not share their last names for confidentiality reasons. Following this review, all three participants signed the group consent form (Appendix D). The main purpose of the group was to verify themes and interpretations that emerged in the individual interviews. Seven to fourteen months had passed since the individual interviews, allowing the family members to further process their experiences and for memories to change as a result of new experiences and processing of old experiences. The researcher therefore attempted to move the group members back towards their time in acute care. This was achieved through several means. The individual stories and a summary of the themes had been mailed to the participants for review approximately two weeks before the group meeting. In the group the family members discussed that reading these materials brought back many memories. At the beginning of the group the researcher also discussed the importance of going back to these early weeks and months in memory in order to verify the themes as they had been expressed shortly after the experiences occurred. It was pointed out that later  35 experiences might have changed their viewpoint somewhat but that this group was concerned with the initial reactions and experiences, not later interpretations. Beginning the review of themes with the traumatic and intensively experienced initial hours after the injury further helped the family members go back to their early memories. The interviewer also explored those themes in more detail for which the statements in the group differed significantly from the original reports and summary (as they had been analysed and interpreted by the researcher) in order to determine if such changes were related to changes in perception by the family members over time or to mis-interpretation by the researcher during the analysis. The common experience of having a severely brain injured family member and having spent some time in the same acute care facility fostered the development of rapport among the group members. To further facilitate this process, a comfortable room was chosen, refreshments were served and group facilitation skills were applied. The group interview was recorded on audio-tape for review during the analysis. The group discussion was at times very emotionally charged, especially during the review of the initial impact of the injury and the topic of hope. Family members indicated that talking about these experiences continues to be difficult and emotionally challenging. However, they also agreed that the review and discussion contributed further to their own processing of the events and therefore was considered therapeutic by the group members. Care was taken that every family member had the opportunity to be heard equally and that differing opinions were accepted. Data Analysis and Interpretation Staff Interviews The information gained from each interview with a staff member was summarized individually and than combined with the information gained from the visitation of the four hospital units into a description of the environment in which the events described by the family members occurred. Familiarity with the environment in which an event occurs is important to the understanding of the experiences described by the family members (Yin, 1994). The description of the setting was reviewed by the contact person at the hospital to verify the information. Suggested changes were incorporated into the final description. Family Member Interviews The data from the family members was collected through in-depth, semi-structured interviews. The analysis consisted of several stages: (a) the interview itself, (b) the analysis of the transcripts, (c) the summary of the transcripts into individual stories and their review by the participants, and (d) the  36 discussion of the themes in the focus group. Following the definition of Hermeneutic Inquiry (Guba & Lincoln, 1989), the analysis process already began during the interview. Hermeneutic inquiry "involves a continuing dialectic of iteration, analysis, critique, reiteration, re-analysis, and so on, leading to the emergence of a joint (among all the inquirers and respondents, or among etic and emic views) construction of a case" (p. 84). Therefore, constructions are developed collaboratively. This creation is based on an ongoing process of analysis from the first moment of interviewing, in so far as the interviewer and the participant make conscious and unconscious decisions to notice and focus on certain information and themes, while others will not be attended to (Guba & Lincoln, 1989). Pre-existing experiences and beliefs influence which aspects of a conversation are followed up on and which are ignored. In order to reduce the influence of my own beliefs as a clinician who used to work in the same hospital where the participants' experiences occurred, I kept a detailed journal of my thoughts, beliefs, and reflections about the literature I had reviewed and the interview results. Prior to each interview I reviewed this journal in order to increase my awareness of my own beliefs. This practice allowed me to determine at least some of the time if a specific line of investigation was more influenced by my own beliefs and experiences or i f I was able to follow the participant's story line. Constant checking and clarifying contributed to the development of a detailed description of experiences and meaning making. The aim of this form of interview interpretation was to search for the "intended or expressed meaning" and to establish a "co-understanding" (Kvale, 1996, p. 47). The intent was not to test a specific hypothesis but rather to understand the experiences of brain injury in the early phase by the family of the injured person through the lense of one family member, and the meaning that these family members constructed from their experiences. The second stage of interpretation occurred once all interviews were transcribed verbatim (Kvale, 1996; Mishler,1986). Aspects of the speech process that were relevant to the understanding of the meaning created were noted, such as pauses, changes in tone, and emotional expressions such as laughing or crying (Miles & Huberman, 1994). The inclusion of this type of information into the transcripts increases the transparency of the interpretation process. Transcribing, coding, and analysing interviews involves not only analysis of existing information but also already interpretation in so far as any decision about what will be coded and how it will be coded cannot be done without personal interpretation (Strauss, 1987). Throughout the analysis of each interview I continued to keep the journal in order to record thoughts and feelings that emerged as a result of reviewing the interviews. These notes were collected and considered throughout the individual and cross-case analyses in order to reduce their  37 influence on the analysis and my interpretation. The transcripts and notes were read repeatedly, while listening to the tapes. Themes emerged and were listed initially in random order. Once the preliminary analysis of all family member interviews was completed, the individual themes and topics that had emerged were compared (Miles & Huberman, 1994). Themes and patterns from all cases were organized into meaningful units through a process of cutting, arranging of themes, re-reading of transcripts, and re-arranging of themes. Parallel to this process the individual transcripts were summarized into individual stories. These stories were mailed to the family members for review and the family members were encouraged to suggest any changes to their stories. The process of summarizing the information into coherent stories contributed to refinement and changes to the themes and the pattern of summary that had emerged during the analysis of the individual transcripts and the cross-case analysis. Further changes to the summary of themes occurred as a result of reviewing the suggested changes to the four stories and the comments by the four family members. At this stage, the units of meaning and themes were presented to the focus group for verification and further discussion. Further changes to the grouping occurred as a result of this discussion and the process of summarizing the findings in written form. The grouping of the themes and topics therefore changed repeatedly throughout the process of individual and cross-case analysis and group discussion, until a coherent description emerged. Some topics emerged as a result of the literature review such as "Emotional Reactions", "Needs", and "Coping Efforts." Others emerged in the process of analysis such as "Personal Processes" and "Medical System." Securing Confidentiality and Ethical Conduct Care was taken to ensure voluntary participation, ethical conduct, and confidentiality for the participants. Participants were made aware of their right to withdraw from the study at any time prior to the individual interview and again prior to the focus group. Participants were made aware of their right to not answer specific questions without having to provide an explanation prior to the interviews and focus group. Every tape and subsequent transcript was coded with a code number (family members) or code letter (staff members). Code numbers and real names of the participants were only matched on the consent forms. These were kept in a secure place and were only accessible to the researcher and the supervisor. The code numbers were used for all handling of the data. During the focus group, confidentiality was again requested. Research findings from the analyses of the transcripts were presented to the participants in a summarized and general manner without identifying participant information attached to the themes. The family members are referred to with code letters in the text of  38 this thesis rather than initials. The code letters are matched with the code numbers only on the signed consent forms. Trustworthiness A n important factor to consider in doing any research is by what criteria the value/worth and the quality of this study are assessed. Guba and Lincoln (1994) suggest that the traditional concepts of reliability and validity are replaced by "trustworthiness" and "authenticity" in qualitative research (p. 114). I have chosen the three following criteria to address these questions: Credibility, verisimilitude, and the usefulness or pragmatics of the study and will discuss each in the following. Credibility This term addresses the level of confidence that the reader can have in my findings (Miles & Huberman, 1994). Other terms used, are also 'internal validity' and 'authenticity.' Good "craftsmanship" (Kvale, 1996) is part of increasing the credibility of results. In order for the reader to be able to judge the quality of this study, the process needed to be transparent. This not only refers to specific procedures taken but also to the influences of my own beliefs and values during the interviews and their interpretation. I ensured transparency through clear descriptions of the research process including the interpretations, and a discussion of my own views. The summary of my own views is based on my research journal in which I tracked my own thoughts, reactions, and processes. The interview process and interpretations were also subjected to member checks and outsider reviews (Lincoln & Guba, as cited in Janesick, 1994). The information from the staff interviews and the site visitation was summarized into a description of the environment. This summary was reviewed by the main contact person to ascertain accuracy in the description. Some changes were suggested, which were incorporated into the final version. The family member interviews were summarized into individual, personal stories. These stories were mailed to the participants for review and their suggestions for change were incorporated into the final story. This form of member check ensured that each story represented the true experience of the participant from their own view point. A l l four members indicated that these summaries represented their experiences, thoughts, and feelings well through comments such as "... you've captured my thoughts very well" or "thank you for this totally unbiased account of my feelings and experiences. I feel it is a true representation of what I have been through." The three family members who were able to attend the focus group again commented about the accuracy of these stories. A second member check took place through the focus group in which my interpretations were exposed for review and discussion by the family members who were previously interviewed. This ensured appropriate representation of their experiences and meaning making processes. The four family  39 members were provided with a summary of the themes in writing approximately two weeks prior to the group. The themes were than discussed individually. I presented each category of themes in detail, followed by a discussion of the participants. The three family members in the group in general confirmed each of the themes in the discussion. Some changes occurred in so far as individual family members confirmed having had a specific experience, although this had not come up during the individual interview. In several other instances, family members now said that they did not experience something in a certain way and a new version was provided. These changes to themes were minimal and were incorporated in the discussion of the results. A t the end of the discussion one of the family members commented that she read her story and the summary that had previously been mailed and thought: "I read it and thought: she's got it!" The other two participants present reinforced this view through nodding and confirming that they had felt the same way when reading the summary and during the group. The analysis and interpretation were also critically reviewed by the supervisor of this study. The family member who was unable to attend the group was contacted on the phone to discuss his impression of the summary that was mailed to him and to discuss the changes that emerged during the group meeting. No further changes resulted from this member check. These reviews by the participants allowed checking for representativeness of the findings of the participants views, and checking for researcher effects (Miles & Huberman, 1994). I also discussed the findings with the supervisor of this study. Verisimilitude The dictionary describes this term as "likelihood, appearance of truth" (William, 1983, p. 1007). This 'likelihood' was achieved through providing a thick description of the participants' experiences and meaning making that can resonate with the readers (Adler & Adler, 1994). Such thick description is achieved through a combination of techniques such as verbatim transcription of the interviews, including my own process notes to explicate my process of interpretation, and member checks through story review and the focus group. The transcripts and notes are available for analysis upon request. Although the process is similar to that used to ensure credibility, the goal is to provide a thick and detailed description that allows any reader to determine if the experiences described match their own experiences. In other words, readers can determine if the interpretations resonate with their own experiences. Although generalization is not the goal of this study and is not possible due to certain limitations discussed under the heading "Limitations of the Study" (p. 104), the resonance of a text with the readers indicates a certain level of transferability to others. Such transferability increases the usefulness of the study results for improving the services to family members of individuals with TBI.  40 Usefulness/Pragmatics One aim of this study was to provide results that can be used in designing new or changing existing programs for families of TBI patients in acute care. According to Kvale (1996, p. 248) "pragmatic validation is verification in the literal sense - 'to make true'." I use several means to increase this study's usefulness for the audience. First, the focus group not only allowed checking and verification of my interpretations but also provided a venue for family members to connect and have their own, unique experiences validated by others with similar experiences. A l l three participating family members commented that participation in the group discussion was valuable for them. It not only ensured that they would agree with my analysis of their experiences but also provided them with another opportunity to process the experiences and to come to terms with the injuries of their family members. An unexpected but welcome result of participation in this study seems to have been the repeated processing of these early events. A l l family members commented at the end of each individual interview that talking about their experiences was extremely difficult so close after these events, but that it also was very helpful. One family member commented during the interview that "it's been quite good for me to look back and to understand and help me to realize how strong we have been. And also the pain, too. How that's evolved. I found that very interesting and therapeutic." Another person commented that it was "so good for me. It really was. Just to talk about it. It was good." One participant expressed during the group meeting that talking about the very first events (notification of the accident, emergency) was still very stressful. However, talking about it in a safe environment with others, who had similar experiences made the process more manageable and even helpful for the long term processing and acceptance of the events. The contact person at the hospital has requested to have the results presented to the staff of the Neuroscience Team. The team will be provided with a copy of this text and a presentation and discussion will be scheduled upon completion of it. This team is continuously revising procedures and developing new training for their staff members and I hope that the information gained from this study will be beneficial for the team in their attempt to serve the injured persons and their family members. Last, the results will be presented through articles and/or conferences to a wider audience. In summary, the goal was to increase the tmstworthiness of this study through several means such as ensuring credibility through transparency and checks by members and outsiders, providing a thick description of the family member's experiences so that it may resonate with future readers of the study, and increasing the usefulness of the research findings through creating contact between interested family members, and exposure of the study to the public.  41 The Position of the Researcher The question addressed in this study has grown out of my own work in brain injury rehabilitation for approximately 14 years. M y own experience working with individuals with TBI occurred in acute care as well as in community based, long-term rehabilitation as an Occupational Therapist. In acute care, I often perceived a lack of emotional support for families. The main focus of health care professionals was to maximise the injured person's function although my role as occupational therapist permitted me to have extensive contact with family members. To provide education and support to the family members were part of my own treatment approach. In the community, I observed many families that were struggling to cope with the residual effects of TBI on their family member and the family as a unit. Family members often do not have access to funding for their own needs associated with the brain injury and there are few services available for family members. I have experienced their frustrations with the 'medical system' directed towards myself as being part of the system, but also as a participant in the individual's or family's struggle with the system. These experiences have strongly influenced my own view of the medical system as it works or, often, does not work. This view includes a strong bias towards seeing the medical system as dominated by experts (of which I am one). The patient and his/her family in this system are often talked down to and disempowered. I, myself, as a caregiver within this system, have also felt frustration and helplessness when I thought that I was unable to improve a family's experience. Prior to undertaking this study, I believed that every individual and family experiences and responds to the traumatic brain injury and the acute care environment in a unique way. These differences result from different past experiences and belief systems, different family structures, and different coping styles. However, I also expected that most families have some common experiences and feelings. I expected family members to react with anxiety and confusion to the uncertain nature of the injury and the often complex care required. A sense of helplessness and anger were anticipated. I also expected family members will try to maintain hope. Frustration with the system would possibly conflict with gratitude towards individual members of the system. When I was a clinician in the hospital system I had certain ideas about how to best help the family members. I recognized that not every family member wanted all information about brain injury at once but also believed that realistic information was essential to their ability to cope with a potentially devastating outcome. I remember cautioning family members to not set their hopes too high because the length of coma indicated severe disability. I also remember my own suspicion i f family members really saw that movement or activity of the injured person they claimed to have seen. Such movement would  42 indicate usually an improvement but unless I as clinician saw it myself I often would not believe the family members. I thought I knew best what was possible and what was not. I also repeatedly encouraged family members to not stay all day at the hospital, expecting them to trust me and the other clinicians without question. In short, my own believes were strongly coloured by the professional's viewpoint. In the process of listening to the participants I became aware of a range of thoughts and emotions in response to their stories. A struggle between my 'expert' knowledge about what is best for the family member and the recognition that the family members are also experts about their own needs began. M y initial reaction in response to their anger about professionals 'prescribing' them to take breaks and go home was defensiveness. From an objective and professional viewpoint it would probably be better to go home and take breaks. However, I also realized that the family members were at some level aware of their needs such as to take time out. A l l four family members began to stay away from the hospital when they were ready for it, not when I thought that it might have been best for them based on their stories. M y own respect for their own self-knowledge grew with each interview. I began feeling first guilt about, than anger toward the health care professionals who continue to prescribe behaviour based on their expert ideas rather than to listen to the actual needs of the family member. M y respect for the family members increased even more as I realized and began accepting that they are experts themselves. I realize that these four family members are not representative of all family members and that some will not have such self-knowledge. However, I now believe that we as professionals have to first assume that they know rather than that they don't know and therefore take the time to check this assumption. We can offer suggestions based on what might have helped others but such suggestions should be offered in a manner that recognizes the possible self-knowledge of the person and that leaves the choice about acting on the suggestions with the family member. Throughout the analysis process I was acutely aware of this shift in my own perception and the ongoing struggle of my 'expert thinking' with the new or expanded insights that I had gained throughout my training in counselling psychology and as a result of listening to these four stories. I reread many passages, trying to make sense of my own reactions and trying to understand the participant's viewpoint. The responses from the family members to the summaries of their stories and in the group to the summary of themes gives me confidence that I have been able to maintain a focus on the family members' viewpoint rather than superimposing my own: "I am not sure of what is left of this story, but  43 you've captured my thoughts very well. It was hard to read and relive it" (C). "Thank-your for this totally unbiased account on my feelings and experiences. I feel it is a true representation of what I have been through" (D).  44 CHAPTER  IV: RESULTS  The following chapter summarizes and describes the results of this study. First I will provide a description of the setting in which the participants' experiences occurred. Second, I will describe the stories of each of the four family members that participated in this study. Last, I present themes that emerged in the individual interviews with the family members in a summarized form. Description of the Setting The following is a description of the environment in which the experiences of the four family members occurred. This information is based on a visitation of all areas and the interviews with five staff members from different disciplines (occupational therapy, physiotherapy, social work, nursing). I provide information about the physical environment as well as common routines as they were at the time when the study participants were exposed to this environment. According to the contact person from the Neuroscience Team, changes to the environment, especially the Neuroscience Ward, are planned and routines and work procedures are continuously being evaluated and changed as needed. Challenges of working with the population of severely ill or injured neurological patients are also discussed. The acute care hospital in which the family members' experiences occurred is a large teaching hospital in British Columbia which is affiliated with the University of British Columbia. This hospital provides tertiary and quartiary care and is the main trauma centre in the province. It is also the main centre for the acute care and treatment of individuals with severe TBI. The family members were exposed to the following units: Emergency, Intensive Care Unit (ICU), and three units under the care of the Neuroscience Team (Neurological Intensive Care Unit ( M C U ) , Step Down Unit, Neuroscience Ward). The main difference between ICU and N I C U is the availability of ventilators in ICU. Approximately 75% of all severely brain injured individuals are first admitted to ICU because of breathing problems (coma, heavy sedation), the other 25% are directly moved to N I C U for observation. If a patient is first admitted to ICU, they often only spend a few days in N I C U , once they are independent of the ventilator. The next step is usually the Step Down Unit which is a part of the Neuroscience Ward. There is a gradual reduction of the level of monitoring from ICU to the ward. In ICU, patients' vital signs and monitors are checked at least every hour and the main focus of the care is on survival. This includes for example stabilizing blood pressure, intra-cranial pressure, and breathing. The team that is working in ICU consists primarily of doctors, medical residents, I C U nurses, respiratory therapists, physiotherapists, dietitians, and other specialists concerned with the immediate survival of the patient. Less attention is paid to maintaining functional abilities such as joint mobility because these are  45  important for the long term recovery but not for survival. The professionals on this team are specialized in saving and mamtaining the lives of patients with a range of medical conditions, not only TBI therefore the knowledge about the possible long term consequences of TBI is more limited than on the units under the care of the Neurosciences Team. The team in N I C U is composed of similar professionals as that of ICU but the focus is only on the treatment of patients with various neurological disorders. It is here where individuals with TBI and their family members are first exposed to the interdisciplinary Neuroscience Team and focussed interdisciplinary early intervention begins. The patients in N I C U are generally somewhat more stable than those in I C U and don't require ventilation any longer. Although the focus remains on stabilizing seriously ill patients, the staff is also more cognizant of factors that could reduce a patient's chances for the best possible long term recovery such as effects of joint contractures. Active treatment such as physiotherapy with a more rehabilitative focus is an integral part of the daily care. Other professionals of the rehabilitation team (occupational therapist, speech-language pathologist) are consulted and initiate treatment depending on the individual needs of the patient. The nurse to patient ratio is usually one to one in ICU as well as NICU. Once the brain-injured person is medically stable, he/she is transferred to the Step Down Unit. Many but not all brain injured individuals gradually awake from unconsciousness at this point in time. The level of monitoring in this unit is substantially less while the active rehabilitative treatment increases. Physiotherapy, occupational therapy, and speech-language pathology all often become actively involved. The nurses in this unit care for five patients with two nurses. Often they also care for additional patients on the Neuroscience Ward. The main purpose of this unit is to provide a more gradual transition between the close monitoring in N I C U and the relative lack of monitoring and higher level of active treatment on the Neuroscience Ward. Often injured individuals only stay in the Step Down Unit for a few days, however, this not only depends on the patient's status but also the availability of beds on the ward. I C U and N I C U are located next to each other in one building. There is one waiting area for all family members, regardless if their injured or ill family member is in ICU or NICU. Some families have access to one of the four family rooms. However, many families do not have the benefit of such a personal room because of the large number of possible families who could benefit with patients in ICU or N I C U (as well as other specialty intensive care units in the same area). Both units have several isolation rooms. In ICU, the regular beds are positioned in individual alcoves, separated by walls with windows which can be covered with curtains. The front of each alcove can be closed with curtains. In N I C U , the regular beds are positioned in two large bays, four in each bay. Each bed is surrounded by a  46 curtain for privacy. Both units are generally very busy due to the large number of professionals who are continuously monitoring or treating these acutely ill people. Family members are allowed to visit at any time, although they are discouraged to be at the bedside during nursing shift changes or while certain procedures occur. The goal is to limit the number of family members at each bedside at any given time to two, but this rule is often broken. The Step Down Unit consists of one large, long room with five beds side-by-side, surrounded by curtains. There is one isolation room. There is less staff available in this unit. Family members are again allowed to visit at any time but night time visits are discouraged. Since the injured person usually is beginning to be more alert once they have reached this unit, the families can become more involved in the care and treatment of their injured family member. Such involvement can include assistance with feeding, talking with or reading to the injured person, and taking the family member out of the unit in a wheelchair if they are able to get out of bed. The Neuroscience Ward consists of two wards (East, West), each with two wings (A, B). These four wings are arranged as a star with two nursing stations and public and service elevators in the centre. The Step Down Unit is housed in one of the two wings of the East Ward, while the rooms used by the rehabilitation staff, as well as general meeting rooms take up one wing of the West Ward. The patient rooms are primarily four-bed rooms, although there are two semi-private rooms, and several private rooms available. The private rooms are reserved for those patients with infections, patients with very difficult behaviour, dying patients, or those who pay privately for such a room. There is little space on this ward. The rooms are cramped and the staff is complaining about the lack of storage space for necessary equipment such as wheelchairs, transfer lifts, or emergency carts. The walls are covered primarily with charts, instructions, and notices as well as medical pictures that are used for education and teaching. There is a small common room, but otherwise patients and their families visit in the rooms or family members take the ill or injured person outside of the ward. The involvement of staff is shifting on this ward, compared to the ICU, N I C U , and Step Down Unit. One nurse is responsible for 4 to 5 patients during the daytime, more at night. While the patients' health is still monitored regularly, nurses spend more time getting patients ready for treatment sessions, transferring them in/out of bed, feeding patients, and other more physical tasks. Most patients attend active therapy one or more times each week day. The focus of therapy is on increasing the patients independence in basic activities of daily living (feeding themselves, dressing themselves, bladder and bowl control), physical mobility and functioning (transferring, walking, use of all limbs), communication (assessment and treatment of speech-language impairments), and assessment and the beginning treatment  47 of cognition such as orientation, memory, attention, and problem solving. Traumatically brain injury individuals often improve more quickly during the early weeks after awaking from unconsciousness. The rehabilitation staff s goal is to further these spontaneous improvements, and to maximize the individual's level of functioning while in acute care. This treatment phase contributes to the decision making process of post-acute care. Depending on the severity of the injury and the associated impairments as well as available funding, an injured individual may be transferred to the local government-funded rehabilitation hospital, may go to one of the few, small, private rehabilitation facilities for more severely injured persons, or may be transferred to a care facility. Some brain injured individuals also return directly home and may received outpatient or community-based treatment. Rehabilitation efforts start as soon as an injured individual has reached the NICU. Rehabilitation professionals are consulted and become actively involved, depending on the individual needs of the injured person. With progression through the different units to the Neuroscience Ward, the treatment changes from the initial passive interventions such as range of motion exercises to active treatment that requires patient participation. Once a therapist has become involved with a particular individual, they generally continue to work with this patient until discharge or until there is no longer a need for assessment or treatment by this therapist. Family members are encouraged to participate in the treatment if they feel comfortable with this and they will be shown activities that they could do with their injured family member outside of therapy if they request. The staff members that were interviewed discussed some of the challenges of working in this environment and with the severely brain injured population. A consistent comment was that of having to cope with a very high case load of often severely injured individuals who require much intervention and care. A l l staff members feel that they often cannot provide the level of care or treatment that they would like to provide. Changes in the hospital structure in the last 10 years have resulted in a shift in patient population. Currently the majority of patients in these units have had severe injuries or illnesses and require heavy care and a high level of treatment. The 'easier' patients that require less involvement from the staff, such as simple back surgeries, are usually no longer admitted to the Neuroscience Ward but rather are treated in a Short Stay Unit. There also has been a shift within the staff. Many of the older and more experienced staff members of all disciplines are retiring or moving into less challenging work areas and many new staff members were hired. Work in Neuroscience is demanding and complex and new staff members require many months if not years to acquire the same level of competency and ease of working as the old staff members had. There are also many staff vacancies, resulting in frequent overtime, especially for the nursing staff, and increased work loads for everybody.  48 A l l staff members that were interviewed also commented on the lack of space and new equipment. The working environment is less than ideal for this often heavy and physically demanding work. Another difficult factor for staff members is the limited options for their patients for discharge. Many individuals with severe TBI do not qualify for the government-funded rehabilitation facility, although they still may benefit from further rehabilitation. These individuals often continue to stay on the Neuroscience Ward long past the ideal discharge date because no follow-up facility is readily available. This situation usually causes much stress for the families who would like their injured family member to receive more treatment or to be in a more appropriate environment. Families often voice their anger and anxiety to the various staff members. The Neuroscience Team is attempting to integrate family members into the team. Therefore they are not only working with the individual patient but also often with all the family members that are present. The nature of the illness and injuries in these units is complex and often frightening to the family members. Family members experience a range of emotions and it is common that they react with anger and anxiety, as can be seen in the participant stories. The staff members, other than the social workers, are not trained in counselling but are often confronted with situations where such skills would be helpful. In addition to providing care and treatment for the patient, they also often provide support, information, and education to family members on a daily basis. Staff members from all disciplines sometimes need to spend much time interacting with family members who are anxious or angry while at the same time attempting to provide care for a relatively large number of patients who often require a high level of care. This results in time pressure, emotional and physical stress, and conflicts about time allocation and priority setting for the staff members. There is no formal debriefing process in place for emotionally challenging situations but the staff members from all disciplines strongly support each other through informal debriefing. Crisis situations are often managed through debriefing through the social workers on the team. There is a hospital wide debriefing program available but most of the debriefing occurs informally within the Neuroscience Team. Individual Stories The following section contains the individual stories of the four family members that were interviewed for this study. I summarized the contents of each interview into a coherent story. Each story was than reviewed by the individual family and they were encouraged to add or change anything they want in order to obtain a story that describes their personal experiences as best as possible. Any changes and suggestions were incorporated into this final version of their story. I have given each family member a letter code (A, B , C, D) that is unrelated to their initials in order to maintain confidentiality. I also have  49 excluded any information that might lead to identification of the family members, such as place names or names of friends and relatives, or other individuals important to their story. A.'s Story Outline of events. A. is a 51-year-old Canadian born, Caucasian woman. She completed highschool and a university degree in an area related to medical care. She and her husband have been married for thirty years. They have two sons, age 17 and 20. A . describes her family as being very close and supportive of each other but also as very strong and independent individuals. A . sees her self as an organizer and as creative. She is the main care giver in her family. She discussed that she generally trusts the health care system but views many aspects critically. A t the time of the accident, their children were in the process of growing more independent and she and her husband were learning to "let them go." The older son was preparing to travel for one year overseas and her younger son was close to completing highschool at the time of the accident. The accident occurred at night when A.'s son was 16 years old. Her husband and her older son were out of town and she was alone at home. Her son was driving the car and speed seems to have been one factor in the accident. A friend was with him in the car but the friend was not badly injured. Alcohol was not a factor in this accident. Police and victim services volunteers arrived at A.'s home at approximately 1:30 in the morning to inform her about the accident. The victim services volunteers took her to the hospital and stayed with her until late morning. They also continued to support her through phone contact for several weeks after the accident. Because her husband and older son were both out of town in different places the night of the accident, she called her best friend, who arrived at the hospital in the later morning and gave her much needed support. She did not notify her husband or older son of the accident until approximately 6:00 a.m. because she felt that there was nothing they could do in the middle of the night where they were and that it was better for them to be able to sleep. She received support from the social worker in Emergency. A. described this support as being very practical in nature, helping her with important phone calls (her husband, motor vehicle insurance) and supporting her. Her friend also provided very practical help by notifying other friends of the family and organizing food delivery for the family. Her friend continued to be involved in organizing instrumental and practical support for A . and her family throughout their stay in acute care. This help included a system for daily food delivery and ninning errands. Her husband arrived at noon and her older son shortly thereafter. A. was able to see her son for the first time before her husband arrived. He had sustained a basal skull fracture and a severe traumatic  50 brain injury but otherwise only minor cuts on his arms and face. He apparently had shown purposeful movement at the time of admission to the hospital. He was heavily sedated at the time when she saw him first. Once he was stabilized, A.'s son was transferred to the Intensive Care Unit. He remained there for approximately seven weeks. He experienced high fever for approximately 6 weeks and the ICU doctors were not optimistic about his prognosis. However, the neurosurgeon remained more optimistic and A. was able to maintain her hope for her son's recovery. Possible sources of the high fever were four bouts of pneumonia and two episodes of urinary tract infection. There also might have been a neurological component to the high fever. He began regaining consciousness slowly after approximately seven weeks, at which time he was transferred to NICU. He was somewhat restless for several days, but once he regained full consciousness, further improvements occurred very rapidly. He stayed for three to four days in NICU before being transferred to the Step Down Unit, where he stayed for two weeks before he was moved to the rehabilitation hospital. His total stay at the acute care hospital was approximately ten weeks. A. reported that she was unable to continue working and quit her work immediately after the accident occurred. She visited her son daily and spent all day at the hospital, especially in the first several weeks before he regained consciousness. Later she would occasionally take some time out, particularly when she knew that another family member or friend would visit with her son. A. became immediately actively involved in her son's care. She sometimes helped the nurses with bedside care. She also brought in professionals from outside the ICU, who provided alternative treatment methods such as therapeutic touch, Reiki, cranio-sacral therapy, and light-energy healing. She and her husband took on different roles in the care for their son. A. became the main contact and spokesperson in the hospital, becoming very involved in her son's care and advocacy. She had relatively little direct contact with friends and relatives. This was partly because she spent many hours each day in the hospital and partly because she often felt unable to talk on the phone to others about their situation. Her husband became the main contact person for their external circles of support such as other family members and friends and also their son's friends. They organized healing circles at school. A. attended only one of these healing circles, while her husband organized and attended others. He also maintained phone contact with many people and updated friends and family about their son's status and progress. Emotional response and reactions. A.'s initial reaction to the news of her son's car accident was shock. She was unable to stand and had to sit down. She felt like being in a "nightmare," in "slow motion," and in "pain." She coped by praying and also by relying on automatic survival mechanisms. For example, she packed some food and drink before going to the hospital, and searched for appropriate  51 clothes. She noticed a strong reluctance to go to the hospital and face the situation. She coped by drawing on her willpower, praying, and focusing on small steps. Once she was in the car of the victim assistance volunteers, she wanted to get to the hospital as quickly as possible and she perceived the driving speed as extremely slow. On arriving at the hospital, she explained that her body's reaction was "fright [sic] or flight." She experienced diarrhea and strong thirst. She spent the waiting time praying, talking with the two staff persons from victim services, and taking care of important calls with the help of the social worker in Emergency. A . reported that she could not cope with much information and would consciously put aside any information that was overwhelming or might undermine her hope. This information included her own medical knowledge. She recalls being told by the emergency resident that her son sustained a "severe head injury." The word "severe" triggered recall of medical information that she knew about TBI: "Part of me knew, right, understood, a big part of me, because I have a lot of experience and I know about these things. I know what's possible  but I also had a lot of hope - a huge amount of hope - and a  belief of a lot of possibilities. So I put on - I put aside all the negative stuff. I put aside -1 decided to put aside all my knowledge - from the point of view how bad this can be, and what could happen down the road, because it was too overwhelming. I wasn't willing to fall apart. So I put it - over there- on the side - on the shelf." Her main focus on this first day after the accident was not to fall apart for her son's sake and for the sake of her family. She experienced an expectation to be strong as a result of her medical training and her focus narrowed totally onto everything that would help her son: I was putting it aside, because I could not cope with it at that time. I think it was a coping mechanism that I had.... Because I had to deal with the main thing right now, which was not to fall apart. It was very important not to fall apart - because -1 - because for [her son], he needed me. And I knew, I knew my family needed me. And I knew the expectations were, because I was a medically trained person - that I would be able to help everybody  I was really strong  willed. She also drew strongly on her spirituality and envisioned "angels" helping her to cope and get through this experience. She reported that in this crisis, she opened herself up to spirituality and the expression thereof, although she described herself as normally being more "defended." She feels that these beliefs helped her to maintain her courage to cope with the events and to maintain her hope: ... like my heart was wide open, which it normally isn't. I am really normally quite a defended person, but it was wide open, but I at that time -1 did really feel that I was - that I got a lot of help from God and angles and whoever. I just said: Ok, I need help right now. And then I would  52 say in a few minutes: I need it, I need help again, I need it now. I just had to keep on getting help. Ok, now and now, and now, like talking through this all the time. Her thinking narrowed very quickly towards her son and anything that she could do to help him in his recovery. She maintained this narrowed focus until his discharge from the hospital, although she was recognizing at some level that her focus would have to broaden eventually again in order for her to live a healthy and satisfying life. A. was still alone, without immediate family support, when she was first able to see her son. She reported that he "looked beautiful." He did not have any external, visible injuries except for a few cuts. His injury consisted of a basal skull fracture and traumatic brain injury. Doctors told her that her son was heavily sedated (a normal practice to reduce the risk of further damage) but that he had been moving purposefully at the time of admission to the hospital. This information supported her hope for good recovery. A . was able to maintain calm while in hospital but she described that both, she and her husband experienced strong emotional reactions in the first night. Her husband "fell apart" and both were crying, "sobbing" most of the night. Although she felt devastated, overwhelmed, and scared for her son, she also felt an unusual sense of strength in her which she described as a "glowing light bar right through my body." She requested medication for herself and her husband from their family practitioner, so that both of them were able to sleep in future nights because she knew that she would need her physical strength in order to help her son. Her husband's initial emotional weakness caused her to put her own emotions aside and to assume the role of the strong person who would be able to "hold everything together." A. summarized this initial experience as being in "shock" and in "denial." She described that she consciously put any of her professional information and experience aside that might interfere with her ability to maintain hope. She experienced a strong feeling of "hope" right from the beginning of this experience and she was aware that she was involved in a "significant life experience" and within days began visualizing this experience as a journey that she and her son were taking. A. also became quickly very aware that she needed support from family and friends, and through her spirituality. A. described having a feeling of helplessness in the first 2 to 3 days, especially. She felt everything was geared to reducing the intra-cranial pressure, to maximize her son's opportunity for a better recovery. She realized she needed to let the nurses do their job for his safety, but also felt it was extremely important for her son to have his family near him. She described relief that some staff members were very supportive. They explained procedures and worked around family members. She said she felt great anxiety and anger at other staff members  53 who were apparently uncomfortable with the presence of A . and other family members. These staff members advised A . and family to leave and let her son be alone with medical staff. She felt these staff members treated her son as a medical diagnosis, and not as a person. She was angry that they did not talk to him or explain what they were doing with him. A. described that she experienced two opposing thoughts or emotions. On the one hand she felt as if her son, as she had known him, had died, on the other hand she experienced strong hope for good recovery. She became quickly very actively involved in her son's care and treatment where she could, and she brought in external professionals 2 to 3 times per week. This caused conflicts with some of the nursing staff who were not used to this level of family involvement. She felt that the system was allpowerful in ICU. She reacted with an inner feeling of great anger when she felt her son was treated impersonally or when procedures were not explained to her. She tried to control the outward expression of her anger because she knew that angry reactions would not improve the staffs cooperation with her goals and demands. She learned to use her knowledge of the system to her son's advantage and to receive the care that she felt he required and deserved. She also used her organizational skills in order to set up visiting schedules, treatments, and support for her son and her family. A. made a point of being informed about any test results, any treatments, and her son's physical and physiological status in general. She took on the role of a primary care coordinator for her son, often knowing more about his current situation than the next nurse or resident taking over his care. She monitored closely what each staff person did and at times had to make them aware of new information that they had not read yet. Being able to organize and taking on the role of primary care coordinator seems to have given her a sense of control in a situation that is largely out of the family's control. Her focus narrowed completely onto her son. Nothing mattered as much as his care, his progress towards recovery, and her role in this process. She maintained a sense of reality and process through journaling. She kept a detailed record of her experiences, feelings, and reactions as well as her son's status and changes as a report for herself for the future, for her son to read if he should regain this ability, and to process her own thoughts and feelings. A. had hoped to be able to receive assistance and support from one of the health care professionals designated to this task in ICU but realized quickly that she felt uncomfortable with the available persons. She felt patronized and not listened to. However, she was able to connect with another staff person who covers ICU. A. described this person as a someone who can truly walk with somebody in such a difficult situation and she felt strong emotional support and a personal connection. This support on-site was very important for A. because she attempted to maintained the role of the strong  54 person while her son was in I C U and because of her conflicts with some of the nurses. She felt an obligation to be able to cope with I C U because of her medical knowledge and having been exposed to this before in her work. She described that she was able to distance herself from her son to a certain extent and was able to see him as a patient. This helped her to accept the medical necessities of intubation, monitors, and various medical procedures. Another strong source of external support was a counselor whom she had known for several years already. This counselor had previously worked in the area of brain injury rehabilitation in a hospital setting and therefore was able to relate to A.'s experiences. She helped A. to cope with her feelings of anger at the system, fear for her son, and grief for the loss of the son as she had known him for sixteen years. She was also able to assist A . and her husband to understand each others' differing coping efforts. The conflicts with the nursing staff in ICU seem to have been related to two factors. A . ' s medical background and knowledge of treatment for TBI might have been intimidating to some of the nurses. She also requested and administered certain treatment for her son such as regular range of motion exercises to prevent long term joint damage. The high work load of the staff in ICU possibly made it difficult to provide the high level of intervention that she hoped for. She expected that her son would be treated with respect and as a person, not in an objectified and depersonalized manner. She saw that not only some of the nurses, but also many of the doctors and other staff members used a depersonalizing approach toward her son. This was especially noticeable from specialists other than neurosurgery/neurology and younger residents. She often worried how her son might be treated during the hours that she could not be at the hospital and therefore tried to advocate for the best possible care. The most controversial and difficult aspect, however, was probably her bringing in external, alternative healers into this acute care medical system that is focused on the use of technology to save lives. Some staff members were accepting of these treatments and were willing to work around alternative care treatments others seemed more resistant to such possible disruptions to their routines. Some nurses were very supportive and were able to help her to maintain hope through positive outcome stories. A . requested regular family meetings with staff, in part to help her deal with the system, to ensure that she received all relevant information, and to gain a sense of control by knowing what the immediate future plans were. A. described that the recovery of her son was complicated by high fever. She felt that many of the nurses and doctors in ICU were giving up hope and feared the worst for her son. This fear transferred itself to her and she found it extremely difficult to maintain hope and a positive attitude while the professionals were becoming more guarded in their prognosis for her son's future.  55 She received much support of various forms throughout her son's stay at the acute care hospital. Some of her friends organized daily food delivery for her and her family, as well as assistance with other basic errands. Receiving cards, and flowers from friends and family members showing their support and caring was also very helpful for her. She reported that she was only able to talk openly with a few select friends and family members about her own emotional pain because she is in general a very private person, but knowing that others were with her and her family in their thoughts proved to be invaluable for her. A.'s son was ready for transfer to N I C U two days before a bed was available. He was moved to a different and more public bed in I C U for those last two days. At this point in time he began waking up more and became very restless, resulting in him being sometimes exposed because the sheets would slip off. A . felt that this phase was "awful" because he was so exposed to everybody entering the unit and because he was receiving less attention. She felt that he was more at risk for another decline in his health and became anxious. She was very relieved when her son was finally transferred to N I C U . A. explained that this experience of her son's injury, his slow and difficult recovery in ICU, and even the later phase of recovery in N I C U and the Step Down Unit felt like an ongoing "emotional roller coaster" for herself and her husband. Her emotions were constantly fluctuating between hope and joy about a small improvement, and fear, when the next crisis occurred. Underlying these emotions were strong feelings of anger at the system, grief about the loss of her son as she had known him for sixteen years, and hope for good recovery. A.'s son began regaining consciousness quickly after his transfer to N I C U . A . suggested this sudden and quick improvement in his level of consciousness might have been related to the quieter and more calming atmosphere in N I C U . He stayed for only 3 to 4 days in this unit before he was moved into the Step Down Unit on the Neuroscience Ward. On becoming fully conscious, he progressed rapidly and was ready for transfer to rehabilitation within another two weeks. A. described that she felt horror and pain at how "brain injured" he looked when her son began sitting up in a wheelchair. She also felt shame and anguish for her son at seeing the reaction of other members of the public whom she felt stared with disgust at her son in this state. However, she also was herself ashamed of her own emotional reactions to his disability. Realizing that she herself was ashamed about her son whom she loved so much was very difficult for her. A. felt that, in general, her son's move to the Step Down Unit was a positive experience because he started progressing rapidly. She discussed that she would have preferred a more healing environment with beautiful pictures on the walls, rather than photos of medical operations. However, she  56 appreciated the care and interaction of the nursing staff and therapists on this unit. She continued to experience difficulties with some of the doctors of disciplines other than neurosurgery and with some of the residents who continued to treat her son in a depersonalized manner by talking about him in front of him, stereotyping him, and not discussing plans for procedures with her. Personal processes and changes. A. discussed that her relationship with her husband was affected by this experience. She assumed the role of the strong one, who was especially initially supporting her husband. She felt that they "bonded" in a new and possibly even deeper way as a result of going through this experience together. However, they needed to work through disagreements and conflicts, especially about their son's treatment by external professionals with alternative healing methods. Each of them took on a different role. She became the advocate for her son and was the primary contact person for the hospital. Her husband became the primary contact person for their relatives, friends, and their son's friends. Both needed to feel a certain amount of control in order to cope and therefore they experienced at times significant conflicts. She described that she interpreted this experience as a journey or rather several interrelated journeys. She was on a journey but so was her son and the community of her family, friends, and his friends as well. Recognizing that her son was travelling through his own journey allowed her to leave him at times in order to take care of her own needs. She ensured that her own health and her physical and emotional needs were taken care of through eating well, using sleeping pills, and through regular sessions with her counsellor and group therapy. Initially her emotions were dominated by fear, sadness, and anger and she tried to counterbalance these negative emotions with hope. Once her son started improving, these strong negative feelings shifted towards a strong sense of joy and elation, although she still experiences sadness and fear at times. A . began re-evaluating her routines and values and gained a different perspective on many issues as a result of her son's severe injury. Her priorities in life have changed and many things or issues that used to be important are less important now. She has become more aware of her own mortality and the frailness of life. Her own spirituality and her relationships with other family members became central to her and she has been able to strengthen her connection to her own parents and siblings as a result of this shift in priorities. She described that she has become stronger and has more of a sense of self as a result of her journey. She is less concerned about others' reactions to her actions and is even willing to alienate others if the cause is important to her. A.'s spirituality also has somewhat changed. She had not been involved with a church prior to her son's accident but felt a sense of spirituality. However, this was one  57 aspect of life that she had not paid much attention to prior to this experience. She now feels a stronger and deeper sense of spirituality and it has become more a part of her general life. The health of her son became the greatest focus in her life. A l l actions or thoughts were directed towards helping him to recover. She discontinued social activities and hobbies and stopped working. Her "life was on hold." The only pre-injury activities she continued to attend were a therapy group and individual counselling sessions. These activities provided her with relief and helped her to understand some of her own emotional reactions better. She always anticipated that she eventually would return to work but at the time of the interview she was still unable to determine when might be the right time to do so. A . felt that there was some kind of purpose in her son's accident but at the time of the accident she was still unable to understand what the purpose might be. Although the accident was a tragedy, she feels that the outcome will ultimately also have some positive aspects. Finding an answer to this question has so far not been important for her. At the point of the interview she primarily experienced a strong sense of loss and sadness. Although her son survived and has improved substantially during his last weeks in acute care, he will be changed and her relationship with him will be changed. She also feels that she has learned much about herself and how she relates to others. She used to be primarily a giver in her involvement with the wider community. This accident placed her in the position of a receiver of much support and kindness, not only from her immediate family and friends but also the wider community. B.'s Story Outline of events. B . is a 28-year-old Canadian born, Caucasian man. He completed highschool and is currently involved in post-secondary education. He was working for a crown corporation at the time of his wife's accident and was at the end of a two-week shift working in Vancouver. His 21-yearold wife was working as a waitress and bartender at the time of the accident. B . and his wife lived on Vancouver Island in a smaller community. They had been married for four years at the time of the accident. B . discussed that his family has had much experience with the medical system and medical emergencies. Both, B. and his father had surgeries and his father is suffering from a chronic illness. At approximately 2:00 a.m., B. was awakened by a knock on his door. One of his co-workers told him that the police were on the phone and that B.'s wife had been in an accident. Police explained to him over the phone that his wife had a motor vehicle accident and was en route to a small local hospital. He was advised that her condition was serious and that he should contact this hospital for further information. A nurse at this hospital informed him that his wife was critically injured and that it was uncertain i f she would survive. She was being transferred with Medivac to the acute care hospital where  58 the study took place. His wife had been involved in a single vehicle accident. The exact reason for the accident is not known. B. notified his own parents and his wife's mother before going to the hospital. His co-worker accompanied him to the hospital and it was approximately 5:00 a.m. by the time they arrived in the emergency. His wife did not arrive until approximately 1 Vi hours later and he had to wait until approximately 9:00 a.m. before he was finally able to see his wife. She sustained a traumatic brain injury and fractures to her spine and shoulder. His co-worker stayed with B. until 10:00 a.m.. His mother-in-law arrived from Central British Columbia approximately 30 minutes after he first saw his wife. At that time, nobody was able to provide them with clear answers about his wife's prognosis but they were prepared for a long time in the hospital by the neurosurgeon. B. and his mother-in-law decided to stay at a hotel rather than with relatives or friends. The hotel was close to the hospital which allowed them to come and go easily. Staying close to the hospital in a hotel also allowed B. to pace himself physically and emotionally. He indicated that he would visit for as long as he could without becoming more depressed, than return to the hotel to recharge, in order to visit later again: "instead of, you know, doing the marathon I'd do little sprints." His wife's recovery was initially complicated. One of her lungs collapsed, the staff had difficulties controlling her intra-cranial pressure, and an artery was ruptured when staff had to pull out an IV line that had been inserted wrong, leading to further instability in her health. Once B.'s wife was transferred out of ICU, her improvements were steady and there were almost daily changes in her level of functioning. She stayed in ICU until just after Christmas, stayed for approximately 4 days in N I C U , and remained on the Neurosurgery Unit for approximately 5 weeks until her transfer to the local rehabilitation hospital for further rehabilitation. Her total stay at the acute care hospital was approximately 2 Vz months. For the first three weeks there were usually no more than 2 days without any crisis. It was not until three weeks after the accident happened, that B.'s wife stabilized to the point where he felt for the first time comfortable enough to leave his wife and to travel to their home to check on it and also to learn more about her accident. B. reported that he was unable to continue working. He felt a strong need to be with his wife and he feels that he would not have been able to concentrate sufficiently and might have put others or himself in danger at his work site. He was able to stop working because he was entitled to a portion of his wages under a benefit plan. He discussed that this allowed him to fully focus on his wife's recovery rather than having to worry about finances, having to work, or having to make a decision about quitting work. His  59 mother-in-law was not as "fortunate" as he was and he feels that having to work and commute between Central British Columbia and the acute care hospital added much unnecessary strain to her situation. When the tracheotomy was removed, B.'s wife started immediately to talk. Initially, her conversation and verbal output was "mixed up" and often did not make sense but B. stated he was happy and grateful that his wife was talking, looking around, and obviously responding to her environment. She received various therapies while at the acute care hospital, especially during the last weeks on the unit. B. only attended Physiotherapy on occasion and Occupational Therapy twice because his wife had difficulties concentrating and was too easily distracted from the therapy tasks when he attended the sessions. The therapists did not show him many activities that he could practice with his wife at times when she was not in therapy but he also did not require such guidance. He involved his wife in various activities within the limits of her endurance, such as going for walks with a wheelchair and watching videos or T V . She also required assistance with eating until shortly before her transfer to rehabilitation, which he usually provided. Emotional response and reactions. B.'s initial response was terror. He responded with a physical sense of being sick. He also described a feeling of numbness and disbelief, like being in a dream, until he was able to see his wife. He started immediately to pray that his wife would survive and to focus on 'just waiting' until he could see her and receive more information. His co-worker had a similar experience with his own wife in the past and was able to support B. during these hours of waiting. They passed the time with basic social conversation which distracted B. from his worry. B . explained that this was very helpful for him. He discussed that a social worker offered assistance and support but that he did not need her at that time because his co-worker was available. Seeing his wife for the first time, approximately 1-1.5 hours after she arrived with the helicopter was "devastating" for him. She was unconscious and "all covered in dirt, all scraped up and everything and tubes coming out of her every which way and you know, it was, it was devastating at that point." Prior to seeing her, he had been provided with some basic information by the neurosurgeon attending to his wife. B. discussed how frustrating it initially was for him and his mother-in-law to not be able to receive clear answers to their questions. He was longing for concrete answers which were not available because of the nature of the injuries. However, he quickly accepted the facts "rather easy" and understood that the situation was very unpredictable. His mother-in-law had more difficulty to accept this uncertainty and therefore asked the same questions over and over again. He initially did not want to believe the seriousness of the accident but he nevertheless knew at some level that it was very serious.  60 The neurosurgeon had discussed that the first three days are the most important ones and this is what B. focussed on during these early days after the injury occurred. B. described that he "kicked into self-preservation mode" at this time and he maintained this stance throughout his wife's stay at the acute care hospital. He tried to accept the inevitable, take one day at a time, and pace himself. He told himself repeatedly that there is nothing he can do other than to wait and pray, and to take one day at a time. He also discussed that he consciously focussed on eating regularly, not drinking too much, sleeping regularly, and trying to maintain his own health. He also attempted to maintain control offinancialissues, such as paying bills on time. His mother-in-law had more difficulties coping and it appears that she was unable to manage work, visiting, and mamtaining control of her financial affairs. While his wife was in the Intensive Care Unit (ICU), one of B.'s strongest emotions was fear that his wife might die because she remained medically unstable for at least three weeks. He explained that he also felt "very, very alone because I mean no matter, everybody, everybody's feelings and everybody's, everybody's going through their own little personal hell in a situation like this" "everybody is going through their own pain and their own little problems about the whole situation." He also had lost his partner and best friend to this accident (his wife). It seems that his mother-in-law began fulfilling the role of confidant and emotional support over time. B. described that supporting and "nurturing" his mother-in-law throughout this experience was very helpful for himself This allowed him to focus on somebody else rather than his own anxiety. Talking with her as well as talking on the phone with his own parents also provided him with a venue to process what was happening, his own thoughts, feelings, and reactions. B. felt uncomfortable going out into the public during thefirstweeks after the accident and described that he was feeling like he was in a "dream," "not real," and being in a "zombie-like state." His life narrowed to alternating between his hotel room and ICU and he was unable to tolerate others around him who were not directly involved in this experience. He also acknowledged that he became very impatient with others and could not tolerate incompetence, or mistakes, or contact with others in general. B. described that it was difficult for him to maintain a calm exterior while having to deal with issues such as insurances, work, or financial institutions. He would feel: a ball in my, in my chest and my stomach that would just be like I got to get out of here, I got to get awayfromthis now. And you know, my voice would start shaking and I'd just get like, you know. It's just the worst feeling, you just want to get away, you don't want to have to deal with it, you don't want to, you know, you feel like, you feel like just screaming at the top of your  lungs, you know, its' all you want to do. I don't know, .... there's like this much [indicating a thin layer with his fingers] between this calm exterior and the inside that's just screaming and yelling and just every emotion in the book that just ran beneath the surface, you know. B. discussed that having to live in a city that he was not familiar with after living in a small town on Vancouver Island was high stress in itself in addition to the high stress of his wife's accident and the uncertainty of the outcome. As his wife's health improved, his tolerance for others and for problems outside of the hospital improved again. His main contact during these first few weeks was his mother-inlaw and regular telephone contact with his parents. Although his wife's situation was extremely difficult, B. was able to maintain hope throughout her slow recovery. Prayer and a believe in a higher being who was protecting his wife supported his hope. B . had been involved in a church in his youth, but had not been an active believer in recent years until this accident of his wife. Now praying was one of the few active things that B. could initially do for his wife. He prayed "from my heart." It was: all I could really do and I was, it was a, it was a way to keep hope, a way to sort of have faith that things would be, things were going to be okay. You know I was praying that, you know, it was all, all in God's hands, you know, and.. protect her... Just hold her in your hands and protect her and just, just keep her safe while her body is healing, you know. That was all I really ever asked for. Another source of hope were stories that nurses in I C U told him about previous patients who had been equally severely injured and improved over time. He was full of praise for the nurses in ICU who were able to make him feel comfortable, answered any of his questions and were able to support his hope through telling these stories. He described feeling somewhat as a bystander and very much helpless although he was daily at his wife's bedside and was watching closely what was happening. He approached I C U and his wife's unstable condition very rationally and described watching everything very closely, "comparing numbers and variables." He felt somewhat uncertain how far he could intervene in his wife's care without offending the nurses but on the other hand felt that he was able to help out by observing and informing the nurses of changes in her status that he was uncertain how to interpret. When B. went home for the first time three weeks after the initial accident of his wife, he experienced a significant emotional reaction. Seeing the damaged truck that his wife was driving caused him for the first time to fully realize the extent of the accident and its implications. Being alone at home, in an environment where everything reminded him of his wife who was still unconscious in the hospital  62 brought memories back and led to a more complete realization of the severity and possible implications of the accident. This was the first time that B. broke down and wept openly after the accident of his wife had occurred. He described that there was "no holding back. I had to leave the house. It was too much for me to handle." Questions about the "Why" of this accident emerged. He became worried that he might have contributed to the accident because of repairs to the vehicle that he had done and he questioned if there was anything he could have done differently. However, he was assured by the investigators that there were no mechanical problems with the truck that his wife was driving. As his wife gradually improved over the weeks, B. experienced changes in his fears and worries. He described his wife's recovery as chapters in a book. The first chapter was centred around the question of his wife's survival, the second chapter addressed questions of basic physical capacities such as i f she was going to be able to move her arms and legs. One of the later chapters involved his fear of changes in personality. B.'s greatest fear after losing his wife was if his wife was "going to be her" or if she was "going to be something else." B. described that each further progress of his wife was joyful but also caused fears and a renewed sense of uncertainty and not knowing. He described it as becoming "almost comfortable with" a certain stage that she was at and learning to cope with specific challenges and fears associated with it and than she would suddenly take the next step in her recovery and he would have to adapt to this change and develop new ways of coping. The most difficult experience for B. was the uncertainty, the not knowing of the future, even the next day or the same evening and not having the person closest to him (his wife) to share this experience. He felt a strong need to be informed about everything that was happening or being done to or for his wife. Most of the nurses that B. encountered seem to have been very good at explaining procedures to him as well as his mother-in-law but some professionals approached his wife in a technical manner without providing any explanations. This approach made him feel very uncomfortable. He was concerned that his wife might notice, or understand, or experience some of the things that were happening or were being done even while unconscious. He also experienced several incidents when his wife was treated inappropriately, potentially causing harm. These incidents undermined his own trust in the system causing him to be more observant of any changes in his wife's medical status and functioning. Lastly, he has had previous experiences with the hospital system and is aware of the risk for human error in such an environment. Knowing what was being done seems to have given him some sense of control in an uncontrollable environment: I was there, because I wanted to be there, but I was also there to watch for screw ups. It was just something you know, I mean, I've been around a — being around a medical profession,  63 which my family has, you know there are screw ups a lot. I mean people are people and they are going to screw up. In general he felt it easier to trust the system while his wife was still in ICU compared to her being on the ward because he felt that his wife was less closely monitored on the ward. B. tried to pace himself physically as well as emotionally. He and his mother-in-law often alternated with visiting which gave him time to himself to relax and to process and work through the events. A social worker had advised him that there would be "a lot of up and downs, you want to sort of stick yourself somewhere in the middle," and to not expect too much when there were any improvements because there was always theriskof a crash in the future. He also consciously tried to stop negative thoughts. The transition to NICU and the ward was not easy for B. He had become used to the close monitoring of his wife in ICU and had learned the extent to which he could be involved in the care and monitoring of his wife. He felt that he knew what the nurses' role was and what his role was in the care of his wife. Once his wife had been transferred to the ward, he again did not know what behaviour on his part was acceptable and how much he could be involved. There seems to have been less consistency among nursing staff with respect to how much they allowed him to assist. He experienced the approach to his wife's care on the ward as being more "haphazard" and inconsistent. One incident particularly undermined his trust and reinforced his impression. Some of the staff members were not aware or forgot that his wife needed to wear a brace because offracturesin her back and also seemed not to know how to put on this particular brace. He felt that he needed to intervene, first to make them aware of the need to wear the brace and than to stop themfromputting it on wrong. This incident again undermined his trust in the medical staff and prompted him to continue monitoring his wife and her care closely. B. also was initially uncertain how he could or should interact with his wife once she started to regain consciousness. His role suddenly shiftedfrombeing a bystander to becoming actively involved with his wife. Interactions with her were initially difficult because of confusion and his own difficulties gauging her level of competence and understanding. Observing a close friend interacting with his wife provided him with a better sense of where his wife was at and how he himself could communicate with her. His wife participated in various therapies once she regained consciousness but B. only attended in a few sessions, although family participation is generally possible and often encouraged at this hospital. His wife's ability to concentrate and attend to the therapy tasks was limited and he felt that he was distracting her too much. However, it was important for him to know how she was progressing and what her remaining difficulties were and therefore he appreciated the therapists' updates about his wife's  64 progress and the functions and tasks that they worked on. He wanted to receive information about his wife's potentials, weaknesses, possible future prospects, and how his wife was progressing in therapy. This information helped him to see the bigger picture and to further increase his understanding of his wife's injury and the implications of it. Once his wife had improved and was closer to transfer to the rehabilitation hospital he took her several times to ICU to show the nurses how she had improved. He wanted to give them another story of hope to share with future families because he himself had benefited much from these stories of hope. B. discussed that the main factor in his ability to maintain hope was his wife's rapid improvement once she was transferred out of ICU. He would travel home during the times when his mother-in-law was visiting from Central British Columbia and usually noticed big improvements after two days of absence. Personal processes and changes. B . expressed that his life and his outlook on life have substantially changed as a result of the accident of his wife. They had been planning to have children in the near future which was now on hold and possibly even questionable. His own development and growth at work had also been stopped temporarily by his inability to work while his wife was hospitalized and struggling to recover from her severe injury. He also noticed that he is appreciating more what he has, rather than being future focussed and he has become more patient. He re-evaluated his life priorities and he has become closer to some people, especially his mother-in-law and his wife's best friend. B. also became more aware of the community at large and is very appreciative of the support that he experienced from their home community. People in his community looked after his home while he was in Vancouver and also organized a benefit activity to raise funds to support him and his wife. He also learned that many people were praying for his wife. B. described his faith prior to this accident as having been more of a personal relationship with God rather than a church based faith. His believe in God has become stronger as a result of his wife's accident. He strongly feels that something protected her, that it "wasn't her time." He also feels that it was a miracle that she was able to survive the accident and recover relatively well. At the time of the interview, B. still often asked questions concerning the "Why" and 'WTiat I f of the accident, and sometimes wonders if there is anything he could have done to the truck in terms of repairs or equipment that might have prevented the accident. He was told that there were no mechanical problems with the truck by the investigators of the accident. This knowledge brought some relief to these questions because he had done brake repairs and other repairs himself prior to the accident but he feels that these questions will probably come up repeatedly over time. He also feels that he has not started to integrate his experiences yet into his pre-accident life because he has lived completely in the present,  65 which consisted primarily of the hospital, being at the bedside of his wife, and hoping for recovery. He anticipates that there is much more work that he and his wife will have to do in order to process and fully come to terms with the accident and its consequences. B. described that he gained much comfort from talking to people throughout this experience. Explaining to others what had happened and what was currently happening seems to have been a possibility for him to process the experiences and his emotions and to make sense of it. His main contacts for this exchange seem to have been his parents whom he phoned almost daily, his mother-inlaw, one close friend, and a social worker on the Neuroscience Ward. His relationship with his motherin-law changed substantially as a result of going through this experience together. A special bond developed as a result of this shared experience that nobody else can share. Although he had liked her as a mother-in-law prior to this accident, their relationship now is not that of a traditional mother-in-law son-in-law relationship. Their relationship is in some sense more intimate. C s Story Outline of events. C. is a 48 year old Caucasian woman. She completed high school and was working independently, cleaning houses, at the time of her son's motor vehicle accident. She and her husband have been married for 30 years. They have 2 children, age 23 (daughter) and age 26 (son). Her husband owns his own company and therefore has some flexibility in terms of his work. They live in one of the suburbs of Vancouver. C.'s son was working at the local airport. She described their immediate and extended family as being very close and supportive of each other. This support became instrumental in their ability to cope with the severe injury of their son. Faith has always been a strong part for C.'s family and prayer was a part of their daily activities even before this accident of their son. She discussed that as a family they always have been close and were able to communicate with each other. Everybody knows what is on the other's mind and there is great mutual respect. She describes the family's greatest assets in this situation to have been respect, love, and communication. C. 's 26-year-old son was injured as a passenger in a car that was involved in a severe accident. He apparently had been offered a ride across a bridge from a pub towards his home by a woman he and his friend had met that evening at the pub. The driver of the car died in this accident. Two other passengers only sustained minor injuries. Her son sustained a traumatic brain injury and a fractured left femur. His traumatic brain injury was severe and resulted in substantial permanent impairments. He remained for six months at the acute care hospital. C. describes that she and her husband received the phone call from police at 6:00 a.m. in the morning. Her son had been injured earlier that night but it had taken some time for police to locate his parents because he did not carry any ID with him other than a passport. She and her husband had been  66 looking after their nieces that night. Her husband immediately contacted a close friend and his nephew for support because other family members were initially unavailable. His friend quickly joined them in the hospital while the nephew arrived later in the day. They stayed until their son had been stabilized and the surgeries that were required (leg surgery, insertion of an ICP screw) were completed. At that time they went home briefly to pick up some clothes and other items before returning to the hospital and settling into a routine of visiting and waiting. A friend offered C. and her husband an apartment near the hospital to stay at for the first few days. A few days later they moved into the apartment of their son in downtown Vancouver, where they lived for the next four months. In the last two months of their son's stay in acute care they returned to living in their own home and commuted to the hospital. The neurosurgeon told them that the first 48 hours were the most critical days. The neurosurgeon also assured them initially that things seemed to progress as he had predicted. However, after a few days he seemed to change his prediction and began preparing them for a slower and more incomplete recovery than initially anticipated because of the severity of the injury. They encountered several crises and complications in the initial days and weeks. Their son's intra-cranial pressure remained unstable for a long time. There was concern that C.'s son's carotid artery had been damaged in the accident and this needed to be investigated. Later he developed pneumonia and a bleeding ulcer. When he developed the ulcer, he was still too unstable to tolerate major surgery and C. reported that this incident was the most unsettling because it happened at a time when her son was finally becoming more stable and they did not expect another crisis. C.'s son remained in ICU for almost five weeks. During these weeks, the family had use of a family room in ICU, which became their main support centre. Friends and family would gather there, they kept a diary in this room for everybody to use, and they collected cards expressing support and caring. Her son was transferred from ICU to N I C U where he stayed for 5 days. He spent another 9 days in the Step Down Unit before he was finally transferred to the Neuroscience Ward. Once C.'s son became more alert, he also became more agitated and restless and his behaviour was at times difficult to control. He reacted angry, lashed out, and called the nurses names. He also became aggressive and would hit whoever was trying to assist him with personal care tasks. C. began to actively assist in the care of her son once he was transferred to the ward, because she felt that some of the nurses were interacting with her son in an inappropriate manner and did not know how to manage a patient with behavioural difficulties. She also felt that many did not have the time that was needed to calm her son because of the high overall work load of the nurses. C. also attended most of the therapy sessions with her son. She wanted to learn how she could further help her son to relearn and improve his functioning because she felt that the level of therapy that her son was able to receive was inadequate. She realized  67 that the work load of the staff was too high to provide more therapy but she also realized that her son would benefit from more intervention and therefore became actively involved to provide stimulation and therapy. C.'s son did not improve sufficiently to be accepted to the local rehabilitation facility. They therefore decided to register him with a small, private rehabilitation facility that specializes in the treatment of severely brain injured persons. The motor vehicle insurance is covering this cost. Unfortunately, her son was ready for transfer approximately four weeks before a space became available. These last four weeks in an acute care hospital which was not equipped to deal with her son's rehabilitation needs were difficult for the family. C.'s husband owns a business with two partners and was initially able to take as much time as he needed to be with his son. C. herself worked with her daughter in housecleaning and stopped working altogether for some time because she needed to be with her son. She stated that her number one priority was to be at the hospital to support her son and that she would have quit any work if that would have been necessary. Their daughter also was able to reduce working and all three spent much time together at their son's bedside. This mutual support has been very important for the family in their ability to cope with the severity of the injury. C. visited her son daily for most of the day while he was still in ICU. Once he was more stable and transferred to the Neuroscience Ward, she returned to working two days each week while her sister spent these days with her son. C. and her husband eventually hired a case manager who is able to assist them in making choices for their son's future. At the time of the interview, the case manager's involvement was minimal other than assisting them in finding a rehabilitation facility. However, they anticipate that she will be instrumental in the future in order to develop the best possible support system. Emotional response and reactions. C. is unable to recall any details from this first night. She apparently switched into an "automatic mode," doing what needed to be done to take care of her two nieces whom she was babysitting, to get dressed, and to drive with her husband to the hospital as quick as possible. She describes her personality as being quite realistic, not prone to panic, and "looking at the positive end of things." She felt that she first needed to get all information before worrying too much. They wanted to get to the hospital as quickly as possible, partly because their son had already been injured several hours earlier. C.'s husband immediately called one of their close friends and his nephew to be with them at the hospital for support. Once they received the information that their son had sustained a traumatic brain injury and a fracture of the femur, they did not realize the severity of the injury for quite some time. They had no concept of what 'brain injury' meant and he did not look severely injured because "his head wasn't busted open." Their initial reaction was based on how he looked when they first were allowed to see him. Apparently the left side of his face was scratched and  68 swelling was beginning to form in his face and he was intubated. However, in their mind he did not look severely injured at this point in time. C. believes that denial of the facts also played a role in their interpretation of the information they received. Even when she saw their son in ICU after the initial surgeries, connected to various monitors, C. did not fully realize the seriousness of the injury. It seems that she continued to remain in an "automatic mode" of feeling and acting. They had been assured that their son was being taken care of as best as could be and that he was safe for now but that the first 48 hours were the most critical ones. Once their son was considered to be safe, they went home to gather some clothes and other items they would need. It was not until reaching home that C. began to cry and asked the question "Why." She still sometimes asks this questions ' W h y " or "What I f because her son's accident and injury seem so senseless. He was not driving himself and he had taken precautions to not have to drive after drinking. He was a clean, hard working, and nice young man. There was nothing in his behaviour that would 'justify' such an accident. However, she and her husband reminded each other throughout his stay in the acute care hospital that such questions were fruitless and to continue to focus on the present tasks of supporting their son. C. recalls being told repeatedly to "take one step at a time" and that after her son was medically stabilized they would "just need the time" to allow his healing. C. explains that there was some information that she did not want to know and did not ask for, such as information about how close he had been to death and how serious the outcome might be. Most important for her was to hear that her son was taken care off, that he was safe, and that they would closely monitor him. The professionalism that she experienced from all staff involved with her son in this initial phase was comforting and reassuring. She felt confident that she would be told anything that she needed to know. C. and her husband wanted to spend as much time as possible at their son's bedside. They settled into a pattern of waiting and observing. She recalls initially talking to her son in a manner as if he could just get up any minute, still not being able to believe or wanting to believe the severity of his injuries: "I said, okay [son's name], I said, you can get up now but when you do you are grounded" or "this is not a good thing here, you can get up." C. describes the experience of her son's injury and recovery as "bizarre" and "insanity." On the one hand she experienced anxiety and panic with each new crisis ("it's like this whoosh like from a pounding in the chest,"... "just breathless, like what's going on. It's like your heart stops"), on the other hand she felt calm and matter of fact. Staying calm and matter of fact most of the time seems to have been based on her personality but was also reinforced by the approach of the staff involved with her son. They seem to have continued to reinforce that he is taken care off well in this particular hospital, that certain events are normal, and that they will deal with them  69 as they arise. When her son developed pneumonia on the fifth day, she was greatly concerned until she was told that "it's only pneumonia" and that this could be expected and is normal after such an injury. The nurses also seem to have repeatedly reinforced that their son's recovery would be a long and slow process but that he had chances because of his young age, health, and the excellent care that he could receive at this hospital. C. and her family therefore prepared themselves early for a long time in hospital and were not expecting any quick changes. They also developed a strong trust in the hospital staff. C. was offered information about brain injury by the social worker in I C U and other staff but she did not want to have much information about potential consequences of this injury. Her focus was on getting through each day until her son was stable enough to be transferred out of ICU. She was aware that she could not handle a clear prognosis of the future or details about the severity of her son's injury as long as her son was still unstable. In one sense she was living for her son's "graduation" to the ward because this meant that he would survive and live. How he would live did not matter in these early weeks. On the other hand she wanted to be frequently updated about specific procedures, what they were doing and why they were necessary. This information reinforced for her that her son was well taken care off and possibly gave her some sense of control through knowledge. Throughout her son's stay at the hospital she appreciated the encouragement and the messages of hope that she received from some of the nurses and other staff. Some of the staff communicated to her that they believed in a positive outcome and recovery. The encouragement and the trust of the nurses in her son's improvements helped her to maintain her own hope and to cope with the slow realization that her son was severely injured and would remain significantly disabled. C. talked about the unexpected amount of support they received from family and friends. She had not been fully aware of the amount of friends her son had. She described the support as overwhelming but also extremely helpful and comforting in her attempt to cope with this catastrophic injury. Her family and friends pulled together and supported each other throughout her son's hospital stay. C. experienced her son's transfer out of I C U as a kind of "graduation." It was certain that he would survive now but they also began to understand the severity of his injuries and the remaining disabilities. Each transfer to a new ward was positive because it meant that her son was improving but it was also "scary" because the mechanical supports and the staff support were gradually reduced and her son "was more on his own." It was again the matter-of-fact attitude of nurses and other staff members, their professionalism, and their experience that helped C. cope with these anxieties. When C.'s son became more conscious, he remained confused and became more agitated and aggressive. Providing personal care, changing his bed sheets, or similar tasks became more difficulty to complete without being hit by him. C. felt ashamed about his behaviour, knowing that this was not  70 typical of her son. She also felt hurt herself when nurses spoke negatively about him. Although C. spoke highly of the majority of the staff at the hospital, she also felt that some were unable to work appropriately with her son when he became more difficult to control. She indicated that she expected the nurses on the Neuroscience Ward to know how to interact with an agitated, brain-injured person because such behaviour is not uncommon after a severe traumatic brain injury. She was disappointed and frustrated when she realized that some nurses were afraid of her son's behaviour and did not know how to manage him. Some nurses apparently did not want to work with her son because they feared injuries to themselves as a result of his agitated behaviour, others seemed to take his aggressive behaviour personally. He was at times tied down in order to provide personal care or male orderlies were called in for assistance. As a result of her own frustration, worry, and to protect her son from being tied down or yelled at she became very actively involved in his care, including his personal care, feeding him, and even changing sheets. She or her husband or sister would be daily at the hospital for 12 hours in order to provide this assistance and help to their son. They also felt that he was not receiving enough therapy and believed that the more they could work with him in addition to the treatment he received from the rehabilitation staff, the greater his chances would be for further improvement. C. realized that the staffs workload was too high in order to spend the time required to deal appropriately with her son or to provide the level of therapy that he could benefit from. She was not blaming the individual nurses or therapists but the system and lack of funding. However, their daily, long presence was only partially based on recognizing a lack in the system. They also felt a strong need to do something, whatever it was, for their son out of their love for him. Once her son had been transferred out of ICU, C. realized that she needed more time for herself and that she needed to get away from the stressors in the hospital. However, she also needed to know that somebody was with her son at all times during the day. Therefore she asked her sister i f she would be willing to visit and stay with her son two days each week so that she herself could return to work. Being able to get away from the hospital environment provided great stress relief for C. One of the most upsetting episodes on the Neurosurgery Ward was associated with the future plans for C.'s son. At one point in time it was indicated to her and her husband that her son should be waitlisted for an extended care facility because of his slow progress and poor prognosis. C. felt let down by the system and felt pushed out of the hospital at a time when her son was still showing regularly though slow progress in his abilities. She became worried that her son was falling "through the cracks" and would be denied the help that he needed and deserved for his best possible recovery. She also expressed that this demand of shifting her son out of the hospital into extended care was in conflict with the constant message that her son "needs time" in order to improve and progress. On the one hand they  71 were told that he needed time and that they should be prepared for slow progress, on the other hand he was supposed to be transferred into an environment where there would be no further treatment, therefore preventing any chances at further recovery. She refused to accept this option and with the help of the case manager whom they had hired, they found a more acceptable solution. C. expressed that the thought of what might have happened to her son if he did not have the funding from the insurance company and did not have parents who were advocating for him was "scary." Personal processes and changes. C. struggled for some time with the question of "Why" this accident had to happen to her son and why it had to be so severe and devastating. Her son apparently did not know the driver of the car, a young woman that he and his friend had met that evening in a pub. She described her son as usually being very careful. He did not drink and drive, he was working regularly and was neat and tidy. She became overwhelmed at times with the unfairness and senselessness of this accident. Although it would have been easy to blame the driver, she could not do this because she died in this accident. She also questioned and wondered if anything or any small detail could have been changed in order to prevent this devastating accident but concluded that there was nothing that could have been done differently and that the accident now was past and not changeable. She therefore tried to focus on the present and the immediate future. C. tries to maintain a realistic view of the events and to accept them as a fact but also continues to grieve the losses that her son now experiences. Talking with her husband about her feelings and thoughts helped her to process the events, her own emotions and to come to terms with the fact that the accident happened and that she had to deal with the consequences. She considers it a "bonus" that her son survived. Any small progress is therefore a further plus on top of survival. This view was reinforced by talking to friends who had lost their son four years earlier due to an accident. These parents maintain that they would be glad if their son was alive, even if he would have been severely disabled. She and her husband also reminded each other to focus on the present, to take one day at a time, and to not worry unnecessarily about the unknown future. Lastly, her faith and prayer helped her come to terms with the changes in her son, his losses, and her own losses: ' W e prayed constantly. Our friends, family prayed for us. It's very strong. And I think that helps you to accept things. This isn't the end of everything. It helps you deal with a bigger picture of things." C. does not believe that her faith has become any stronger through this experience but rather that her faith has been reinforced because her prayers for her son's survival have been heard. She said that they prayed more often and "harder," and that the topics of her prayers became more focussed as a result of this accident but that her faith itself has not changed. C. is very aware that she is uncertain how she would cope if her son would have shown no improvements at all and stayed in a vegetative state. She considers any small progress a bonus and is mankful for the changes.  72  In order to cope in a situation that was uncontrollable, C. needed to be able to trust the system that everything possible would be done for her son to save him and to promote best possible healing. This trust was fostered by the staffs professionalism, hearing stories about previous patients, and realistic but nevertheless hopeful comments of staff about her son's future possibilities. C. also focussed on any small improvement and used a diary to record every little change. The diary allowed her to review previous weeks and compare them to the current day, which made progress more visible and clearer. In re-reading her diary, she consciously would ignore the reports about her son's crises or 'down days' because she was very familiar with those. Rather, she focussed on the improvements to maintain her own awareness of those. C. described that the predominant feelings throughout her son's stay at the hospital were sadness and anger that the accident happened. Another constant emotion was fear of the next crisis or event, that was beyond their control, and fear of his possible death. Once her son started to stabilize, she experienced a roller coaster of emotions, swinging from happiness to sadness. Over time the emphasis moved towards happiness from predominantly being sad as a result of his slow progress and improvements. This family has apparently been very close through these months of hospitalization of the son. C. described that they worked together as a unit to help him and to support each other. This did not preclude disagreements, but the disagreements could be discussed in the family and worked through. She also explained that she and her husband alternated with becoming weak and sad and therefore the "strong" person could support the weak person. They would stop each other from ruminating and worrying about the future at a time when the future was so unknown. C. described that her own as well as her family's focus narrowed extremely onto her son after the accident. Conversations centred around her son, they did not participate in social activities, and put all plans on hold. She described them as being more "jumpy, a little edgy" as a result of the fears and concerns for their son. She describes a constant tightness and an inability to relax as a result of the anxiety and the intense focus on her son. She recognized that she herself as well as the family needed to begin broadening their focus again at the time of transfer to a private rehabilitation facility. At the time of the interview C. still found it very difficult to begin taking time for herself and her family and to plan activities that did not involve her son or the hospital. She believes that the process will be easier since her son moved into a private rehabilitation facility which is designed more like a comfortable home than a hospital. She feels that he is taken care off well and that the important learning issues will be addressed by staff that is specialized in the rehabilitation of people with such severe brain injuries. She describes her son's transition to this facility like a transition from life saving to living.  73 At the time of the interview, C. was still uncertain which place this injury of her son would take in her life, how she would interpret it and find meaning in it in the long run. She was aware that their lives will be changed drastically as a result of her son's severe injury. The accident caused a "disturbance of the normal" in her and her family's life and future. Traditional roles will be reversed with respect to her son in so far as he will probably never be able to assist her or her husband in their old age but will rather remain a 'child' who needs ongoing support and will never grow up into complete independence. She also believes that this injury may spare her son many unhappy moments in the future. D's Story Outline of events. D. is a 28 year old Caucasian woman. She completed highschool and business college. She is working as a manager for a cosmetic store. She grew up in Alberta with her parents and a brother and describes her childhood as "the best." She continues to be "best friends" with her mother and her father. Her life has been "smooth." She explained that she never tended to dwell on negative things and believes that it is up to the individual to find their own happiness. She describes herself as "pretty layed back" and more solution focussed rather than worrying. Both her parents have always been very supportive of her. She describes her mother as more emotional and intense and able to provide "good, solid advice." Her father is more "scientific," rational, and calm. Her parents were very supportive of her throughout these events through daily phone contact and regular visits in Vancouver. Her 26-yearold common-law partner worked for a car rental agency. He also was originally from Alberta. They have lived together in Vancouver for the past three years. Her partner was injured in spring in a fall. He sustained a traumatic brain injury and fractures to his cervical spine and left ankle. D. described that she was woken by knocking on the door from a friend of her and her partner at approximately 2:00 a.m. This friend and her partner had attended a party nearby but she had chosen to stay at home because she had to go to work early the next morning. The friend seemed to be in a panic and indicated that her partner had fallen but was still breathing. She did not understand initially why this friend was so anxious and "freaking out." He urged her to get dressed and come outside with him. A t that point she realized that something "pretty bad" must have happened, got dressed, and followed the friend outside. She found many people outside, around the corner from her apartment building, including police, ambulance, and the fire department. A police officer prevented her from seeing her partner because there was apparently a lot of blood. Her partner was taken to the hospital by ambulance and she and the friend were driven to the hospital by a stranger who they met at the scene. In the emergency she was directed into a separate room, accompanied by two police officers. One of the police officers called police in Alberta, who notified D.'s partner's parents of his severe injury.  74 Two police officers stayed with her and the friend for some time while they were waiting to hear if her partner would survive his injury. Once the police officers were called away, she and her friend waited alone until the hospital staff sent them home at approximately 6:30 or 7:00 a.m. to wait for her partner to be stabilized. At that time, a social worker briefly mentioned that they had also found a brain tumour when they scanned her partner's brain. The issue of the brain tumour did not resurface until she enquired about it approximately one week later because the main concern in this initial stage was to stabilize her partner and to control and reduce the brain swelling. D.'s mother and the parents of her partner arrived later in the afternoon of the first day. They were assigned a family room, which became a significant gathering place and place for support and communication. D. spent every day at the hospital, sometimes up to 17 hours per day. She was able to take time off work. Her employer continued paying her for as long as she felt she was needed by her partner at the hospital. This eased the financial burden. She decided to return to work once her partner had been transferred out of ICU. At that time he was medically stable and showing signs of improvement. She initially worked part time and spent the afternoons and evenings at the hospital. After four weeks she returned to full time work. Her mother and her partner's parents stayed with her in their one-bedroom apartment. While her mother returned soon to Alberta, her partner's parents continued to live with her for the next approximately two months. Initially this arrangement was workable, but over time she realized that she needed more private space than her in-laws were allowing her. D.'s partner stayed for approximately one month in ICU, than spent 4 to 5 days in the N I C U unit before he was moved to the Step Down Unit. He stayed there for approximately 1 to 2 weeks and than was moved to the Neuroscience Ward. He was transferred to rehabilitation after approximately four months at the acute care hospital. Emotional response and reactions. D. recalled that she did not comprehend the seriousness of the situation until one of the police officers encouraged her to call her partner's parents in Calgary and told her to "expect the worst." From that moment on, until her partner was in ICU, she expected him to die. D. reacted to this comment with a feeling of sudden weakness and almost falling and was escorted back to the waiting room by the police officer. She described that she felt primarily numb although she realized that her partner might die. She also felt guilty about not feeling anything. At that point she had given up hope and prepared herself for her partner's death and she felt intense anger at their friend who maintained that her partner would "be ok." One of the police officers waiting with her and the friend explained possible reactions to shock and trauma to D. and this helped her to understand that her reaction of numbness was a normal response and that her friend's task oriented reaction was equally normal. The ability of the police officer to name and explain these different shock reactions gave D.  75 confidence that he was knowledgeable and could be trusted. She appreciated the reassurance and caring of this police officer in these early hours while they did not know if her partner would survive the injury. D. and the friend were eventually sent home to wait until her partner was stabilized. Being sent home was very confusing for D. but also somewhat reassuring because she interpreted it that he would survive and be transferred to ICU. She used these approximately two hours to call her parents and her partner's parents, to notify her work place, and to talk to a friend. The reality of the events of the last several hours started to "sink in" through these conversations. She describes that she felt "just awful" and that the feeling was "just unbelievable." D. feels that it would have been very helpful i f somebody with expertise in trauma could have stayed with her throughout these first hours to support her and to clarify reactions and information. When D. returned to the hospital, her partner had already been transferred to ICU. She described that he "just looked awful and he was just so dire. He didn't even look like himself." She recalled seeing similar scenes on T V and thinking at that time that it would be terrible for family members. Now she found herself in this position. At that time she felt very alone. The only others at her partner's bedside where his employer, who she did not like, and some other people she did not know well. Neither her own parents nor her partner's parents could arrive until later in the afternoon. D. does not remember much of these first few hours visiting with her partner in ICU. She describes a feeling of pain that had replaced the numbness of the previous night and feeling very alone until support in the form of her mother and her partner's parents arrived. D. was assigned a family room with a telephone and she describes that they would not have coped without this room. This room allowed family and friends to wait and be with each other and not be exposed to other families who were waiting to visit in ICU. It provided privacy and a sanctuary in the early weeks while her partner was unstable and in ICU. D. expressed that she needed to be with her partner as much as possible while he was still medically unstable. Her world narrowed to the family room and her partner's bedside. D. stated that she did not feel much support from the social workers in ICU. Their advice contradicted her own needs and she felt that they did not listen to her and accept her unconditionally or showed the empathy that she needed at this time. She was able to receive this kind of support from another staff member of the hospital who was able to demonstrate caring without many words. She also felt that the nursing staff was helpful because of their reassurance and their medical care of her partner. One of the worst moments occurred on the fifth day after the initial injury when the swelling in her partner's brain suddenly increased. They had been notified by the neurosurgeon at home and were assured that they would be called if there was any change to the worse. When the phone rang in the  76 middle of the night, she thought that it was the neurosurgeon to inform her that her partner had died. She explained that the feelings that swept over her at that moment were worse than those she experienced after the initial accident because she was no longer protected by the effects of acute shock and numbness and therefore fully experienced the fear. It turned out that it was one of her friends calling from Australia who had not calculated the time difference. She describes this event as the lowest point in the overall experience. Although her partner continued to be at risk for further crises and possible death, she felt that no other experience, including the actual death of her partner could be worse than this experience, only at the same level or better. She also recognized that she was able to cope with this experience I already faced his death and if it happened again, I'd already been there." " . . i f he had died, well, I know what that feeling is like, that initial phone call. I know exactly what it was like, and, you know, I knew that it would be just as gross to go through it a second time, but then you kind of start healing yourself. She also had been told that a second episode of such severe brain swelling was unlikely once he survived the first episode. D. prepared herself for ups and downs, "peaks and valleys," but focussed on any small progress in order to get through these first few weeks of uncertainty. It was very important for her to receive information about treatments and procedures and what could be expected initially as a result of a severe brain injury. She received much of the information from nurses and she discussed that the majority of nurses were very good in providing information, assurance that he was treated appropriately and in the best possible manner, as well as support. She and her partner's family also had weekly meetings with the treating doctors to have their questions answered. D. explained that she had no problem with the fact that many questions could not be answered at this point in time. Most of her questions concerned the current treatments and her partner's current medical condition, not the future and she felt that an uncertain answer was better than a definite "No" or negative answer. A vague and uncertain answer leaves room for hope. She also appreciated that the doctors and other staff provided them with honest answers, even if these meant continued uncertainty. D. was also dealing with a difficult living arrangement. The parents of her partner chose to stay with her in her one-bedroom apartment for two months. She indicated that this arrangement was helpful and provided support during the first days after the injury occurred. However, over time she realized that she did not have the privacy that she needed in order to process the events herself. She noticed that her telephone conversations with her mother centred more around the burden of her partner's parents than the burden of her partner's injury:  77 So having everybody stay together, like the first few weeks was good, but then that turned into the whole other problem in itself... Once we knew he was out of the woods, especially out of ICU, I didn't need that support any more and it became, like, you know, I just couldn't stand it anymore  I really needed my own space and I needed to be just alone.  Her partner's parents apparently felt very comfortable at her place and their own boundaries were lowered. They would argue in front of her and show a side that she was not prepared to get to know at this point in time. She described that she would hide in the bathtub and break down because this was the only private space she had in these weeks. Her partner's parents were apparently completely unaware of the burden and discomfort they caused her. Once her partner had been transferred to the Neuroscience Ward, she received assistance from a social worker on this unit to solve the issue of her living arrangement. D. discussed the emotions that she experienced while her partner was in ICU. Although the most intense fear occurred on the fifth day associated with her partner's brain swelling, fear seems to have been a constant throughout these first weeks. Another strong and constant emotion she experienced was sadness. These two primarily negative emotions were balanced by hope associated with any positive event, no matter how seemingly small these events were. A day when the ICP was particularly low or the breathing was somewhat better provided hope for gradual overall improvement. D. also felt helpless while her partner was in ICU: "it was a terrible helplessness. You can't do anything." There was little in terms of active assistance that she could provide other than to sit by his side. She had read reports of people in a coma who remembered some things and was aware that babies who are not held may die. Therefore her role became that of providing touch, voice, and transmitting in some form her love and hope to her partner. Within the limits of I C U she therefore took on an as active role as she could which helped her cope with the overwhelming sense of helplessness.: "I just would talk to him and hold his hand and just spend all my positive energy and hoping that that was helping him in some way in some other level, you know, and that's all I could really hold onto." Towards the end of his stay in ICU even that became more limited because he reacted with an increase in his ICP when she entered on a few occasions. Although these events were worrisome, she interpreted them as her partner beginning to wake up and becoming more conscious of his environment. Knowing that her partner was in a hospital that was well equipped and leading in terms of brain injury care allowed her to trust the system and to maintain hope. Despite the emotional turmoil, D. was able to sleep reasonably well although she dreamed frequently and vividly. The dreams were mostly concerned with the next step she hoped her partner would take such as opening his eyes, or saying the first words. She was aware that she was at risk for  78 losing weight as a result of the stress and therefore "force fed herself and included regular meals consciously into her routine. She nevertheless lost much weight in the four months since her partner's injury. Maintaining hope was at times difficult for her because the improvements were sometimes so small that they were difficult to notice. D. experienced her partner's transition from each unit to the next as a positive step because it indicated that he needed less intensive care and therefore was improving. She had some difficulties adjusting to the change in personal nursing interaction. She felt somewhat left alone in the N I C U and Step Down Unit because there was substantially less contact with the nursing staff compared to ICU. She also felt that the staff did not show much interest in her or in communicating with her. She did not like the dark environment of the N I C U after her partner had been in a bright room in ICU. However, her partner did not stay in either of these units for very long and she experienced more support again once he had been transferred to the Neuroscience Ward. She discussed that the nurses in ICU were very supportive through their intense care of her partner, their knowledge, and their communication of procedures and changes in her partner but did not show much emotional support. She understood that it may be difficult for staff in ICU to allow themselves to become emotionally involved with their patients and families because of the risk of death and the amount of tragic experiences they encounter. However, she greatly valued the emotional support from those few nurses who were able to provide it in addition to providing the hands on acute care. The nurses on the Neuroscience Ward on the other hand were apparently very caring and emotionally supportive. Although their work load was heavy, it did not have the acuteness and intensity of ICU and might therefore allow the nurses to become more emotionally involved. The transfer of her partner to the Neuroscience Ward also became a turning or shifting point for D. Her focus began broadening again from only her partner to also include herself again. She became more acutely aware of the strain she experienced as a result of her partner's parents living with her. She decided to return to work and she also became more actively involved in his rehabilitation rather than remaining a more passive bystander. The relationship with her partner's parents had been a large stress factor throughout her partner's stay in acute care. She describes her partner's mother as weak and unable to cope with her son's injury. She would often not visit for several days, did not participate in the family meetings and seemed to have relied on D. and her husband for support. Having to support her partner's mother at a time when she herself was barely coping was more than she wanted to deal with. The living arrangement  79 also caused significant strain. D. described herself as "quite private" and she had only once lived with a roommate before for a very short period of time other than sharing the apartment with her common-law partner. While his parents were living with her, she did not have much privacy although she needed time to herself to process her own emotions and reactions. This was not possible with three people in a onebedroom apartment. She also felt that she had to be a hostess, and cook and clean for her partner's parents. Her partner's parents began behaving like this apartment was their home and normal boundaries were broken down. D. was exposed to arguments between her partner's parents that were of a nature as she had never encountered with her own parents. She did not feel comfortable witnessing such arguments and felt that she got to know an aspect of her partner's parents that she did not need or want to know. Although she began feeling uncomfortable with the situation very early after the injury, the urgency to address this issue did not become apparent until her partner's health improved. Once her focus began to broaden, she realized that she would have to address this issue because her partner's parents were completely unaware of the strain. She coped with this difficult situation by talking to her parents and friends and by seeking refuge at a friend's place at times. She also received support and help from the social worker on the Neuroscience Ward. At the time of the interview she still feels somewhat bitter that she was put into the position of having to address such a difficult issue with her partner's parents. Personal changes and processes. D. described that she "cocooned" in the first few weeks. Her life completely narrowed in onto her partner. She would get up at 6:00 a.m., drive to the hospital, park every day in the same spot, go to the ICU, and return home in the evening. As a result she became very disconnected from the outside world and any contact was ovemhelming and even painful. The thought that others enjoyed a good day while her partner was close to death and seriously injured was unbearable for her and she therefore avoided all unnecessary contacts. D. feels that she would not have been able to work while her partner's health was still unstable. She would have rather quit her position than attempted to work at that time. Once her partner was stable and had been transferred to the Neuroscience Ward, her focus broadened sufficiently to attempt a return to work. This was initially very difficult for her because her view about life and her priorities had significantly changed. The problems that her customers complained about seemed meaningless and minor compared to her concerns and she reacted with anger. One of her co-workers was able to help her regain a normal perspective about her feelings and reactions. She realized that work that involved 'menial' topics or actions rather than complex tasks and situations, was all that she could handle at that time because she would not have been able to handle mentally challenging work. Once she had come to this realization, work offered a break  80 from the events at the hospital and at home and her worries. Her co-workers were generally very supportive of her throughout this experience and frequently visited her and her partner in the hospital. The broadening of focus also ultimately led to her addressing the difficult living situation with her partner's parents. D. discussed that she has significantly changed as a result of this experience. "Little things" do not affect her as much anymore and she is more able to see the bigger picture now. At the time of the interview, her focus continued to be on her partner and every decision and interaction is somehow related to her partner. She often asked herself the question if something will still affect her in several years and frequently the answer is "probably not." Her view on materialistic milestones such as achieving success at work, money, or owning a home has substantially changed. While these factors were very important for her and they had frequently talked about how to achieve success, getting married, children, and similar topics, she now feels that these factors are less important. Although she still would like to achieve all this her partner's health and her own happiness have become the key issues in the overall picture. She also has become more aware of her own mortality and she is more acutely aware that her life could end anytime. She concluded that it is most important to be true to herself and to live in the present rather than worrying about the future. D. was raised catholic but has not attended church in many years. She describes her faith as a very personal but strong faith which does not require the "manmade" rules of any formal church. Although she has prayed more intensely since the injury of her partner, her belief itself has not changed as a result of these events. Her prayers are conversations with God. Initially after the injury she prayed daily and this gave her much needed support. Since her partner has stabilized and the acute risk to his life has ended, the frequency of prayer has decreased but her faith remains the same. At the time of the interview, D. was also very certain that there was a clear reason for her partner's fall and brain injury. She felt that this had to happen in order for the brain tumour to be discovered before it was too late. She stated that she knew this "from the minute they told me that and that has been a really strong influence in helping me cope, too. That is exactly why it happened. It makes perfect sense and I think we got off pretty easily." Her partner apparently had seizures in the past, as well as other accidents that pointed to his head but he had neglected to have it further investigated. She also believes that no senseless things happen and that there is something positive in anything that happens, even if she may not initially be able to recognize what it is:  81 I know there is no senseless things. Everything is for a reason, you know  In all the hurt and  in all the bad, I know it is going to be merry and good and I might not understand it or really even recognize it for a long time, but I know that is going to happen, too. D. feels that her parents have been instrumental in her being able to cope with the situation. Her mother flew immediately to Vancouver and stayed for some time, her father visited later. During times when they were in Alberta, she talked daily on the phone with them. She feels that her family has become closer as a result of the injury of her partner. She expresses her caring for each of her family members more openly and is in more frequent contact with her brother than she ever was before. She tried to go to Alberta to visit with her parents every month since the injury of her partner. At the time of the interview she had gone twice and experienced these visits as real breaks. Being physically away from Vancouver has been the only way that she could take a break from the events. She mentioned that she once tried to take a day off from visiting while in Vancouver and found that this was difficult to do for her. She felt that she wanted to be with her partner if she had any time to spare. At the time of the interview, D.'s partner had already been transferred to rehabilitation. She continued to dream about the next step of improvement that she is hoping for but was at the same time acutely aware that these steps at some time may end without him having reached his pre-injury level of functioning. She was mamtaining a precarious balance between hoping that her dreams come true and fearing that they won't. She was certain that she wants to continue to be in some form in her partner's life but it was too early to determine how this may look like. There was some pressure from his parents that he returns to Alberta to live near them, while she preferred for them to continue living in Vancouver because most of their support system was here. There is also his brain tumour that still needed to be addressed. Comparison of Common Themes and Patterns Descriptive Summary of Participants and Injured Family Member The following two tables provide a profile of the four family members interviewed for this study as well as of the injured persons. One criteria for participant selection was length of hospital stay of the injured person (lto 6 months). One of the injured persons (C.'s son) remained in hospital for more than six months but the family member was included in this study because the injured person had been ready for discharge approximately four weeks before the actual transfer date but could not be transferred to rehabilitation because of a lack of space available in the chosen institution. Therefore it was felt that the actual stay would have been within the range required for participation in this study under normal  82 circumstances. The profile of the injured persons is similar to that of the average person with traumatic brain injury. As discussed by Wong, Dornan, Schentag, Ip, and Keating (1993), the ratio of men to women who sustain a traumatic brain injury is 3.5:1. The majority of injuries occur between the ages of 21 and 30 and are caused by motor vehicle accidents. Table 1 Family Members Identifier  Sex  Age  Education  Work status during hospital stay  Employment status at time of injury  Relation to injured person  A.  F  51 yrs  university degree  stopped working  employed  mother  B.  M  28 yrs  high school; currently in post-secondary training  stopped working  employed  husband  C.  F  48 yrs  highschool  stopped working  employed  mother  D.  F  28 yrs  college  stopped working  employed  common-law  Table 2 Injured Individuals Identifier Interview Partner  Age  Sex  Cause of injury  Length of unconsciousness  Approximate length of hospital stay  Level of recovery 11.5 years postinjury  A.  16  M  MVA  52 days  10 weeks  high - relatively independent  B.  21  F  MVA  21 days  10 weeks  high - relatively independent  C.  26  M  MVA  42 days  26 weeks  low - needs much care and assistance  D.  26  M  Fall  21 days  17 weeks  low - needs much care and assistance  M V A = Motor Vehicle Accident Level of Care: based on the description by the family member during the group and personal conversations  83 The themes that emerged during the analysis were organized as outlined in the organizational chart on page 84. Two main categories of themes were formed: (a) individual experiences, and (b) the medical system. In the category of "Individual Experiences", two main phases could be distinguished, the initial impact (the first hours until the injured family member was medically stable and in ICU) and the actual hospital stay. Specific emotional reactions, needs, and coping attempts were noticeable in the descriptions of these first hours. Throughout their stay in the hospital specific themes and patterns emerged that overlapped but also differed from the initial reaction: (a) Emotional reactions; (b) Personal processes; (c) Needs; (d) Coping efforts; and (e) Meaning making. Each of these main categories of themes has several subcategories describing or naming specific emotions, needs, or coping efforts. Some of these subcategories fit into several of the main themes such as 'hope.' I first summarized these overriding subcategories, followed by a discussion of the six main theme groups and their subcategories. Participants also commented on the hospital environment and system and made recommendations.  Figure 1 Summary of Themes  Injury  Individual Experience  Overriding Themes  To be Needed  Individual Themes  Initial Impact - Emotional Reaction - Needs  Personal Processes - Narrowing of Focus - Broadening of Focus - Re-evaluation - Spirituality  Emotional Reaction | -Roller Coaster -Fear - Helplessness - Anger - Loss  Needs - Control - Support - Information - Respect - Assurance  Coping Efforts - Support - Trust - Self Care - Active Participation  Meaning Making  Hospital  Environment  Staff  85 Individual Experiences Overriding themes. One of the strongest themes in all stories was hope. Family members expressed that they quickly felt a strong sense of hope (emotion) while they were waiting for any news about the status of their loved ones in emergency. Throughout the stay in acute care, the family members felt that they needed to maintain hope (need) in order to maintain their own strength, get through each day, and not give up on their injured family member (coping). A l l agreed that it was important to maintain hope, even if the situation "was really bad." Some professionals seemed to give up their hope for recovery while the injured person was still in ICU and made comments such as "there is no hope" to the family member (A.). This lack of support for hope triggered anger at these professionals who were losing hope so early in the recovery process, because stories heard from other professionals indicated that prolonged unconsciousness (up to several weeks) does not necessarily mean that the person will die or never regain consciousness. It was better to hear comments from the professionals such as "we just don't know" because these still left room for the possibility of improvement ( C , D.). None of the family members were hoping for complete recovery because they were very aware of the severity of the injury. They were hoping that the injured person would eventually awake out of the coma and begin improving and they often hoped that "maybe tomorrow would be a better day." Moments when the situation looked 'hopeless' were among the most devastating and difficult to deal with throughout this very difficult experience, such as when their injured family member's functioning declined for example as a result of raising intra-cranial pressure. They used different strategies to maintain their hope (coping). Prayer and focussing on any small improvement or positive event were among the main coping techniques used by all throughout the hospital stay (A., B., C , D ) : Even in the early stages from, let's say from when he started to pick up, every week there was something better. Even the fact that he last week, started to chew gum without swallowing it is a big - 1 wrote it down. To me it's a big deal. He's chewing bubble gum and blowing bubbles ( C ) . D. commented that "he just kept progressing and little by little by little, you know, he was getting better and that was the only thing that kept me going." They kept diaries and rereading these notes increased their own awareness of the progress. Sometimes they interpreted movements or changes in a positive light, that in reality also could be neutral or even negative. It seemed that they were aware of these other possible interpretations at some level but chose to follow the most positive interpretation:  86 At that time I think I believed that she did recognize me and that was, you know, in the back of my mind I thought well no, maybe she doesn't, but I chose to believe that she did because it was just, it was just a way of making me feel better about it (B.). Hope expressed by professionals, other family members, and friends (A., C ) , and hearing 'stories of hope' from these professionals (A., B., C , D.) helped the family members to maintain their own hope: I think talking about people that have come in there, that have been in worse shape than [his wife] was and had, you know, recoveries, really good recoveries. That was something that they did that really helped was sharing those stories about people and you - Most of them were just through the grape vine, you know, it wasn't, there wasn't a lot of uh, a lot of stuff available, you know if there was anything like that down the road it might be something to look into. Just, success stories, you know. That just sort of brightens your hope a bit, you know. That it's not a desperate situation, it's not going to last forever, it's gonna...there is a chance (B.). Professional behaviour and being assured that this hospital was the best place for severely brain injured individuals because of its knowledge base and the strong interdisciplinary team were also important reinforcers for these participants' hope ( C , D.). I felt that as far as what they could do for [her son], they were doing everything that they could and that what they were doing was the best. A l l the way along I remember [the social worker] saying that he's in a good place. This is the best place for him to be for head injury. And that, too, is probably comforting. I'm glad he's here. And that gave us reassurances that this was the best place to be ( C ) . D. reported that she "came in and asked any questions. They were totally up to speed as to what was going on and that was helpful, you know, just that security of you know, he is being taken care of, you know." They consciously limited the information they asked for to procedures and current processes, rather than long term prognoses (A., B., C , D.). Learning about brain injury in general was important but only to the extent of processes that corresponded to their injured family member's current situation. While the uncertainty inherent in the recovery process after TBI was difficult to cope with initially, it left room for hope ( C , D.) and was accepted by all as a fact they had to live with. Learning that the recovery process from TBI can take much time and that each individual was unique and recovered differently helped them to maintain hope and to pace themselves ( B , C.) They focussed on one day at a time and one step at a time: "They say that these things, brain, brain injuries they take a long time, and, you know it's, after a while you sort of gear yourself up to that, I mean everybody's different, every individual who recovers at a different rate" (B.).  87 A l l four family members expressed that they felt their injured loved one needed them for their survival (emotion). This feeling quickly became a need to be at the beside as much as possible, up to 12, or more hours each day. Trust in the system made it easier for the participants to leave the bedside occasionally to eat or sleep, but did not eliminate this need. The need to be with the injured person involved a feeling that they could help him/her by just being there. Everybody expressed the belief that the comatose person could sense that they were visiting and their love and caring. Being at the bedside also gave the family members some subjective sense of control in an uncontrollable situation. They all participated in the care and treatment of the injured person. Initially this involvement was more passive such as watching for any changes that the nurses would need to know, talking to and touching the injured person, and praying. Over time the active involvement increased to assisting nurses in the handson care of the family member and participating in treatment sessions. The participants explained that they often felt a need to pray (need) and prayer was an important coping mechanism. This need to pray seems to have been triggered by the lack of control over the situation. There was little they or even the professionals could do to ensure recovery. Much of recovery in this early phase after TBI is related to spontaneous processes in the brain, which can be supported but not yet fully controlled through technical means such as attempting to control intra-cranial pressure. However, these processes cannot be fully regulated or controlled. It seems that there was so little they themselves could do to change or improve the situation that they turned to the one thing that might give hope - a powerful being or force that might have the control to influence the outcome of the injuries. They did not rationally think about such possibilities but rather automatically began to pray and continued to pray throughout the hospital stay. They prayed for strength to cope with the events and they prayed for the survival of their injured loved one: "I just prayed. I said: well, whatever it is, let me deal with it  It became a spiritual need. Because that was the only way I could - could - could find my  strength, any strength" (A.). "I just remember just praying that she would make it, just make it that far  Well I knew there was nothing I could do but pray, you know" (B.). "You know, I used to pray  every night just to keep him alive" (D.). Prayer or 'talking to God' also seems to have offered a possibility to unload worries, frustration, and anger onto someone who would not take it personally and could not talk back rationally. C. expressed that prayer reduced the size of her worries or anger and made it more manageable. Initial impact of the injury. A l l four accidents occurred at night and therefore the family members were woken out of their sleep. Two participants had difficulty recalling details from these early hours, while the others had very clear memories. A l l four participants described signs of severe shock, although this expressed itself differently in the four participants. Feelings of physical weakness, nausea,  88 feelings of numbness, or surreal or dream-like feelings were described in the initial minutes and hours. D. described feeling guilt because she felt completely numb but expected to feel some kind of emotion such as fear or sadness. Two participants discussed how they switched into an automatic mode of acting and did what needed to be done to leave safely for the hospital without thinking. Other feelings that the individual participants experienced were fear, pain, helplessness, and being overwhelmed. A l l four participants described 'not wanting to know' (denial) the severity of the injury, although they were aware at some deep level that the situation was very severe and that the life of their injured family member was in danger. B. commented that "at first you don't want to believe how serious the accident is" but also that" certain things really hit home what was, what was serious, you know how serious things were." They looked for any sign that might indicate that the injury was not too severe: "he did not look that bad" ( C ) , or "he had moved purposeful on admission" (A.). A l l four family members expressed two specific needs that were strong in these early hours: (a) the need to pray and (b) the need to have somebody with them and to not be alone. They described a  that they almost immediately started to pray, although only two participants had strong spiritual believes and prayed prior to the injury of their loved one. In this helpless situation it was very helpful for them to have somebody with them who could provide support. This did not need to be a close family member or friend. Helpful people included a coworker, a friend, volunteers from victim services, a police officer, and social workers. Most important was that this person was there for them and helped them to pass the time waiting for more information. Qualities such as being able to listen, being familiar with the environment and therefore being able to clarify events and normalize experiences, and support with tasks such as booking flights for other family members or notifying the insurance company (instrumental support) were important: She [the social worker] was really useful. She was just there for me, right. Despite the fact, you know, they get busy. But I was - important to her. Was very glad that she was there. It felt like ok - that she is taking care of me (A.). The experiences and feelings of these first hours after being notified of the accident were described as a roller-coaster by all four participants. Various feelings, including hope, fear and anxiety, and confusion were experienced. There seems to have been an overriding sense of being overwhelmed. Emotional reactions. This roller-coaster of emotions continued throughout their stay in acute care. Feelings such as fear, sadness, anger, hope, joy, and helplessness alternated, at times very quickly. The feelings were very "intense" and overall more negative. Fear and hope (as discussed above) were the most consistent and strongest feelings. Sometimes they released the intensity through laughter, which could take on an "almost hysterical" quality (A.). Although fear was constantly present, especially  89 initially, the participants did not elaborate much on this emotion. It seems to have lessened over time. Initially they feared the death of their injured family member later they were concerned that their family member would not awake out of the coma. Fear was also associated with the uncertainty of the outcome, the lack of control, and the unknown of hospital procedures. It appears that they did not want to acknowledge or focus on the fear but rather focussed on the more positive emotions such as hope. Focus on fear might have resulted in becoming overwhelmed by the negative emotions and therefore hindered coping. All four family members felt extremely helpless, especially while the injured person was still in ICU and NICU. The recovery process at that time is largely spontaneous, supported by medical technology. The staff in these units is constantly present and highly involved with the individual patient. This leaves little to do for the family members and they are relegated to being passive bystanders. This helplessness was difficult to cope with (A., B., C , D ) . They attempted to ease it through any form of activity such as actively praying, talking to their injured family member, and monitoring machines so that they could notify the nurses as soon as anything changed. Staff behaviour had a strong influence on the helplessness experienced by the participants. Staff persons who behaved professionally and as experts increased the participants' trust in the system, which eased fears and the need for control. Honesty, even if the information was negative and difficult to accept and assurances that everything that needed to be done was being done also eased the fears, providing this information was given in a professional and believable manner. The feeling of helplessness lessened, once the injured person began to awake from unconsciousness and active rehabilitation treatment began. At that point, family members were able to participate more actively. Two family members described that they would assist with nursing tasks such as washing the injured person, feeding them, and even changing attends. One family member chose to become more active very early, while still in ICU. She assisted with the personal care of her family member and also organized alternative treatments that are not usually part of the ICU routine. She was familiar with hospital processes through her work in health care and there seems to have been less reluctance to become involved at this early stage compared to the other three participants. Although this level of involvement in ICU caused conflicts with some of the staff persons, it also seems to have eased her fears by giving her a sense of control. Everybody experienced anger at various points in time. There were many facets to their anger. Sometimes it was triggered by specific events within the system such as depersonalized treatment of their loved one, lack of respect, or mistakes made by the staff (A., B., C , D.) and it seems closely connected to their own helplessness. They also experienced anger mixed with some jealousy towards unknown outsiders who were able to continue their lives without such severe trauma as they were experiencing  90 (B., D). Their tolerance for rude or difficult behaviour by others was lowered. There seems to have been a wish to "be taken care off' (even if the others could not know what they were going through). Anger was also triggered by the reactions of others to their injured family member, especially once they were able to leave the ward in a wheelchair. Although they understood at some level that unfavourable reactions were largely related to the discomfort of others in the face of severe disability, this did not lessen their anger at those reactions. C. described that she felt a tinge of envy but also joy for the injured individuals and their family members who were progressing more quickly than her own son. She also experienced some anger at the injustice of this accident (her son was a passenger in a car) but she discussed that it was not a very strong reaction and that she and her husband chose to focus on the present, not the past or future to cope with the injury. Although thefinaleffect of the injury on the individual remained uncertain throughout the acute care stay, three family members experienced a sense of loss (A, B., C). They became aware that their injured family member would never be the same. The person as they had known them would be changed and their relationship with this person also would be changed: This person is there and it's almost just like a stranger sometimes and I think it, the farther, the longer it goes  the farther they get apart it feels like, you know. Like you're never ever going  to get back to what you had B.). A. reported that she experienced "a lot of loss, because my son's been changed. It's changed. And my relationship with him has changed". C. mourned the loss of her son's future. Most of the emotions they experienced were more negative. However, all agreed that there were also feelings of joy whenever there was any improvement in the functioning of the injured person. Personal processes. All participants described a narrowing of their focus onto the injured person within hours after the injury occurred. All their thinking, feeling, and acting were directed towards worrying about the survival and recovery of him/her, praying, and being with the injured family member. They life was put on hold: " Life is sort of, everything that was sort of rolling has suddenly come to a screeching halt" (B.). They immediately stopped working and arranged to be at the hospital for many hours each day (8 to 16 hours). Two family members lived within an easy driving distance from the hospital, the other two found accommodations nearby. Social commitments, hobbies, and any contact that were not necessary to support the injured person were eliminated. They discussed how fortunate they felt that they could afford to stop working and that their employers were understanding. Two participants quit work all together (A., C), the other two took time off work (B., D). They felt that they would not have been able to be productive and possibly might have put others at risk (those who were performing such work). The husbands of the two mothers amongst the participants apparently  91  returned to work more quickly. Both took some time off, but not for very long compared to their wives. It seems that the wives took on the role of caregiver for the injured person and did not have to worry about finances or having to make a decision about work because their husbands continued. It is uncertain how they would have reacted or proceeded if they had not had this financial security. The two participants whose partners were injured both took extensive time off work and were able to do so because of supportive employers. B. discussed that his mother-in-law had to continue to work for financial reasons and that this was extremely difficult for her. He described that it was difficult for her to manage any other aspects of her life such as paying bills. Their tolerance for others outside of the experience was reduced and they had difficult to go out into public for some time. Feelings of anger and impatience with others who were complaining about minor problems (compared to theirs) were described: I remember walking over to City Square to get some lunch or something or just take a walk and thefirsttime I did that, I was insane. Like I could not deal with the public, like the girl at the Chinese food place was kind of rude and I, all the people and, it was just ovemhelming. Like I wasn't ready to be in society yet. And that is why, if I had to quit work, I would have because there is no way I could have subjected myself to real life (A.). Going out in public at that time wasn't really - like I'd be walking around and I'd feel like I was dreaming almost, you know, I was sort of feeling sort of not real. Around me there were people going about their daily lives and, it was just weird, you know (B). They could not tolerate suggestions from well-meaning staff persons to take time out, return to work for distraction, or to look after themselves. Such suggestions, especially if they were made in a prescriptive manner were experienced as disrespectful. They were aware at some level that they had to watch their own health in order to maintain their strength and continue supporting the injured family member but taking time outfromthe hospital visits was not an acceptable solution for these four family members. Concern was voiced that staff members wanted them to broaden their focus before they themselves were ready for such a step. The b r o a d e n i n g  of the focus  happened more gradual and the pattern was very individual. Two  participants returned to work once their family member was stabilized, beginning to awaken from unconsciousness, and was transferred to the Neuroscience Ward. However, they continued to spend many hours daily or almost daily at the hospital. One family member returned to work after his wife's dischargefromrehabilitation and one family member has not resumed work yet. However, returning to work is only one aspect of broadening the focus. Social activities continued to be on hold for much longer. Only one participant seems to have returned to a relatively 'normal 'life style approximately one  92 year after the initial accident occurred. However, her situation is somewhat differentfromthat of the other family members in so far as her boyfriend remains severely disabled and returned to Alberta to live near his parents in a rehabilitation facility for severely injured people. He will most likely need to be transferred to some form of group home or care facility sometime in the future. For her, the move of her former partner to Alberta and her decision to separate and live her own life may have provided some form of closure and allowed her to broaden her focus again. The other three participants continue to focus strongly on their injured family member although they have been working on broadening their focus and participating in social activities. The level to which they have been able to do this varies and seems to be related to the severity of the remaining disability and the level of assistance needed by the injured person. It appears therefore that the ability to return to a more normal life depends largely on the individual personality and the circumstances of the injured person (severity of injury, rate of recovery, etc.). I suspect, based on my own experience of working in the community, that for some people the broadening never really occurs again. This can result in a high level of burden to the family member and ultimately psychosocial problems such as depression, anxiety, and isolation. Participants described some other important changes that they noticed in themselves as a result of going through these experiences. They began re-evaluating their own priorities in life and things or events that were previously significant are now considered secondary and minor compared to the injury of their loved one. They have gained a different perspective on life (A., B., C , D.). They also described an increased appreciation of what they have in life: I got more of a perspective on what is important in life... we have had a very good life. Our family. We have had very little tragedy. And we have had a wonderful life... And an understanding - more of a sense of what's important and not important. Things that - like - ah conflicts, ah things that would bother me before, I would just let them all off on the side (A.). They became more assertive compared to before the accident about things that really mattered to them such as their injured family member's care. Two participants (A., D.) described that they became more expressive about their caring and love for other family members: "I told my parents I loved them, which I had never done"(A). All participants relied strongly on prayer to maintain their own strength and to cope with the events. Those participants who had not incorporated spirituality or faith actively into their lives prior to the accident described spiritual growth. They gained a deeper understanding of their own need for spiritual connections and their faith deepened. Faith or spirituality did not necessitate to be connected to a formal church or institution. The participants all explained that their faith was very personal. Those  93 who had previously had strong faith continued to draw on this support and denied any changes (strengthening or weakening) of their faith. Needs. The three most salient and most important needs were: (a) to maintain hope, (b) to pray, and (c) to be with the injured person (see previous discussion). Other needs included control, support (emotional and instrumental), information, respect for the injured person and themselves, and assurance from the professionals. These needs were voiced by all or most of the four participants. Additional needs such as the need for time alone, clear guidelines from the staff, or acceptance by staff were more individual and not shared by many participants. There was little change in needs over time, although some needs lessened in magnitude with increasing improvement in the functioning of the injured person. Traumatic brain injury is a type of injury where there is little that family members can actively do to promote healing and they have no control over progress. A l l four participants were longing for some control while at the same time realizing that this was not possible due to the nature and severity of the injury of their loved one. The lack of control may be more pronounced after TBI compared to other injuries because of the uncertainty of the long term outcome during this initial phase after the injury. Nobody can provide the family members with any clear indication of how long their loved one will be comatose or how severely they will be impaired until several weeks after the injury occurred. A l l family members attempted to take as much control as possible, which seems to be one factor underlying the strong need to be with the injured person. Being at the hospital meant to be able to assist with monitoring the condition, to be able to provide the injured person with emotional support, even if they might not be aware of their presence, and over time to be able to actively participate in care giving tasks and rehabilitation. Family members reacted strongly towards staff who discouraged them from being at the bedside. A l l four participants also were unable to stay away from the hospital for a full day unless they knew that somebody else who they trusted was visiting. C. decided to return at one point in time to work twice per week but only after her sister had assured her that she would be at her son's bedside during those days. B . went home the first time to Vancouver Island when his wife was more medically stable and while his mother-in-law was visiting from the Interior. D. continued to visit daily even after she returned to work. She went directly from work to the hospital for many hours. A l l four participants were aware that they had little control and understood the reasons for this but still had difficulty coping with this aspect of the early recovery phase. M y whole thing was - like what do I, what do I have control over, you know. I really don't have any control over anything right now. So I would say to myself and, you know - what, at that point you know - you know that okay, she's never going to be the same again. What got  94 me through it, is, I don't know, it was, I was just back and forth to the hospital. M y mother-inlaw and I were -1 think a lot what got me through it was helping her out, cause she was, she was really taking it in a different way altogether, you know. And maybe just sort of nurturing her and helping her out certainly got me through a lot of things you know, instead of focusing on my, you know my anxiety and my feelings and stuff. (B.). So I would end up doing things like just sobbing in the bathroom. Like for hours - like for an hour. Being so upset at my lack of control and my inability to - just my anger at the system and the whole situation and - and my fear and everything, you know (A.). Participants expressed that they needed  support,  both, emotional and instrumental. Especially in the first  hours, they had great difficulty organizing things like calls to the insurance, travel arrangements for other family members, or food. Having somebody with them was especially important in the first hours as discussed under "Initial Impact", but to know that others cared was equally important in the long term for their ability to go on and cope: "We didn't need all the bodies there - in the hospital or in our home, but we needed them - we needed to know that they were there" (A.). Three participants expressed that they did not receive much emotional support from staff members in ICU and they explained that this type of support would have been very helpful for their ability to cope. At that time they needed support from people who knew the routines and processes, could help them with organizational issues, and could listen to their worries without having to be concerned about the strength or ability of the other person to cope. This type of support was not available to these family members and they felt the lack strongly. Learning about TBI was initially not very important for these family members, but detailed information  about the current status of their loved one and any procedures that were necessary was  extremely important. They focussed on information that was in the present and avoided asking about the future prognoses, understanding quickly that this was not possible to get. Not having a prognosis also left room for hope. They limited the information that they asked for or that they listened to and at times actively blocked information if it was too difficult to cope with. "He [a resident in emergency] came and said: your son has a severe head injury. And I didn't like the word severe. Because I found at the time I could only cope with a little bit at a time" (A.). Their tolerance for information about brain injury in general and about the injury of their family member in particular increased over time throughout the stay in acute care. They suggested that information should be volunteered and that family members should be asked how much and what they would like to learn about. They expected honesty, even if information was "bad" or "negative," as long as it was delivered gently and in a manner that still left room for hope for some improvement or positive change. They needed to be able to trust that they would be provided with all information that was really important such as a sudden worsening of the condition.  95 The participants agreed that there were many very helpful and caring staff persons on all of the units they were exposed to. However, they also discussed that there were staff persons who treated the injured person and the family members with disrespect, depersonalized and objectified the injured person, and ignored the family members. They recognized that it is difficult to provide emotional support for staff persons who are extremely focussed on the technical aspects of saving lives but they nevertheless expected respect for the injured person and themselves. A l l four worried that the injured and comatose person might be aware of their environment at some level. This belief was supported by stories of accounts from people who had been near death or comatose which all of them had read and heard about. They wanted an environment and treatment that were as much as possible conducive to healing in a broader and more general sense than mere survival. They also needed to be recognized as contributing members of the team and their intimate knowledge of the injured person needed to be recognized. In order to be able to let go enough so that they could leave and go home, they needed to hear assurances that their injured family member was being taken care off in the best possible manner. Knowing that this hospital has an excellent reputation in the care and treatment of TBI was assuring for the participants ( C , D.). Coping efforts. The two most consistent and strongest coping mechanisms were to maintain hope and prayer (as discussed under "Overriding Themes"). Other important factors were to receive support (instrumental, emotional, community), being able to trust the system, taking care of themselves, and actively participating in the care and rehabilitation of the injured person. The most important aspect of support was emotional support from family, friends, and professionals. A l l participants identified a small number of people who were crucial sources of support. These tended to be the closest family members such as partners and parents. The two participants whose sons had been injured described that they and their partners would alternate with being "strong" and "weak," thereby being able to support each other. The two participants whose partners had been injured relied heavily on their parents (mother-in-law) for emotional support. However, it was also important for all of them to know that a wider network of family and friends was thinking of them: We had, it [the family room] was packed with people, friends. A lot of family. A lot of friends. A lot of support. We had a little journal where they could write their thoughts and their prayers. The comfort, the knowing that the cards from where he worked and the people were just you know... It was overwhelming ( C ) . It was [the support from her co-workers] heart touching. It was you know, that they cared so much and not many of them new [her partner] well, you know, so they were coming to  96 support me, and no, it touched me, but you know, they were all so emotionally, you know, connected (D.). They expected professionals to support their hope, even if they had to discuss sad or difficult information or prepare the family for a poorer than hoped for outcome. They needed to be accepted by the professionals, treated with respect, and 'accompanied' in their journey: They were walking with me. Some of the nurses, like [names] especially, the two, they were walking with me. And that's what I really needed, was to walk with me. Not judge me - support me. Find out,  what is my coping style, and of course don't let me abuse you. I mean, I don't  want them to let me be abusive to them, but I want them to walk beside me, you know. And not pronounce - telling me stuff. I want - ideally what I would like is for everybody to be able to hold hope. But not everybody can do that (A.). Helpful but not absolutely necessary for coping was instrumental support. This took several different forms. It included assistance in dealing with insurance companies or making travel arrangements through the social worker in the hospital, receiving cards from friends, family, and co-workers that indicated their emotional support, or even assistance with necessary chores (shopping, walking the dog) and meals. Friends of A. organized daily meal delivery for the family and she discussed that this simple gesture became extremely helpful for their well being. D. discussed in the group that she did not have the energy to prepare meals and ate out most days. She expressed that such assistance would have been very beneficial for her own well-being. The group suggested that social workers in the hospital might be able to provide families with some basic guidelines about what kind of assistance from friends could be useful. They agreed that it was difficult for them to tell others what was helpful because their own thinking was so focussed on the injured person and being in hospital that everything else became secondary. A l l participants were surprised by the extent of the support. They received supportive messages from friends of the injured person who they had never known or in one case even the community at large. One family member organized healing circles in her son's school. The small community where another family member lived organized a benefit to collect money to help him and his injured wife: ...it brought me a little closer, closer to a few people. M y mother-in law, [his wife's] best friend, some people, certain people in the community that I didn't really know before, you know and now, and even just community in general,... they have really pulled together and really shown a lot of support  It was just amazing. I've never ever seen anything like that before [ as during  the benefit]. The turnout was incredible, and all the donations, everything there was all donated and, you know in a time where people don't have a lot.. .it was really, really great, you know, I  97 mean it's - people just offer their help whenever....The time comes when we get back and people came and they, they totally cleaned up the yard, did the gardens and did the hedges and mowed the lawn and got everything all, all tickediboo and tidied up ready for us to come home. Yeah, it's just been great ( B ) . The four family members explained that it was important to be able to trust the system. They could only be there for 8 to 15 hours each day and they did not know much about the actual life saving care that their family member required initially. Trust was therefore instrumental to their ability to cope, to be able to leave and rest at home. Three of the four participants (A., B., D.) experienced at least one if not more incidents that undermined their trust. These incidents included nurses or doctors not being fully informed about the latest events, nursing staff working a second 12-hour shift without a break after having worked for 12 hours already in ICU, mistakes during medical procedures, and lack of knowledge about equipment such as a brace. A l l agreed that in general the professional behaviour of all staff persons helped them to gain and maintain trust but incidents as described above caused set backs and were difficult to cope with. They recognized that many of these mistakes are caused by the human factor and therefore may not be avoidable. B. described an incident where an IV-line was inserted wrong and caused significant damage and risk of further brain damage to his wife. He described being angry but at the same time he also recognized that in general the care was excellent: Yeah, there was [ anger], you know, but on the other hand,... I, I have such a respect for the people that work in there and I know that they are only human. Even until this day I still feel like why did it happen, you know, who screwed up....Yeah  in the end it had to be that way, I  mean what am I going to do. I mean they're all heroes there as far as I'm concerned and, they really - saved her life, you know (B.). Trust was generally improved by professional, knowledgeable, and consistent behavior by the various staff members. They discussed that they tried to take care of themselves and their own health. They realized that they had to maintain their own strength in order to help the injured person. A l l four participants mentioned that they ensured that they were eating regularly to avoid unnecessary weight loss. Alcohol intake was also monitored. Although they spent many hours each day at the hospital, they also took short breaks, either in the family room, going for meals to the cafeteria, or in one case going for short periods of time to the hotel room nearby. One participant described that she had difficulty sleeping and requested sleeping pills from her physician because she knew that she needed to rest and sleep in order to maintain her own strength. She usually does not use medication on a regular basis. Once the injured person was beginning to improve and was medically stable, they all began to take more time out from visiting. They  98  either ensured that somebody else who they trusted would be visiting on the days when they were not present (A., B., C), or they would visit for shorter periods of time after work (D). Active participation in the care and treatment of the injured person was another important coping mechanism. Involvement appears to have given them a sense of control and reduced the feeling of helplessness. Initially this active participation was primarily limited to praying, talking to and touching the injured family member in the hope that they would be aware of the caring and love on some level. They monitored the status of the injured person and the machines to assist the nurses. Later they became more involved. All family members actively participated in the physical care of their loved one, including providing or assisting with bed-baths, feeding the injured person, and in some instances even changing attends. Each family member had a different level as to how much they became involved in personal care. They also actively participated in the treatment sessions, providing that their presence was not too disruptive for the injured person because of problems with concentration. This involvement gave them a feeling of maximizing the resources as well as contributing to the recovery process. They all felt that the resources at the hospital were good but ideally would be better. Rehabilitation staff and nurses were stretched to their limits and the injured persons did not receive as much treatment as the family members wished for. Meaning making. As human beings we try to make meaning of significant events. I therefore asked the family members about the meaning they were able tofindat this early stage after the injury had occurred. One family member described a clear sense of there being a purpose, which was to discover the brain tumour of her partner. The other three participants had significantly more difficulties describing what they were feeling and thinking. It appeared that they were still too close to the accident and too involved in the day by day struggle of treatment and recovery and uncertainty in order to have been able to think beyond practical and pragmatic issues. A. felt that there was some kind of purpose but she did not know yet what this might be. They all described the events as significant life events and were aware that this injury would change their lives forever but were uncertain how their future would look like. Some family members asked sometimes the question "Why" did this have to happen and 'What I f they had done something different (B., C). However, this question was usually too ovemhelming and they felt that it was more conducive to their coping to not dwell on this question. There are no answers to such a question in the case of these four stories. None of the accidents involved obvious faults on the part of the injured persons although factors such as speed, inexperience, or fatigue may have played a role for two of the accidents. Both family members recognized and accepted that there was no answer to their questions. They consciously put the questions aside and focussed on the present.  99 A. visualized the events as a "journey" or rather several separate but inter-related journeys that she, her son, her family, and the community in general were travelling. B. visualized the events as a book. He and his mother-in-law were mrning individual pages initially. Later these individual pages became chapters. Each significant event or episode was symbolized by a page/chapter. A book they were experiencing, not just reading. Some changes had occurred by the time three of the participants met in the focus group. D., who initially saw the clear purpose of diagnosing the brain tumour behind the accident now feels differently. Her partner remains severely disabled and she is beginning to question why this had to happen. Others continue to be uncertain and continue to be very much focussed on the present, avoiding to ask such questions. During the discussion they concluded that maybe one benefit of these events has been an increased understanding of their own lives. A l l three described that their lives had been very positive and "smooth" until the injury happened. The injury taught them about the "dark side of life" which they had never before encountered to the same extent. They feel that they gained a better understanding of and more empathy for other people's pain, no matter what the cause might be. They also described an increased richness in their lives despite the pain they continue to feel. A l l participants are still in the process of learning to live with the aftermath of the injury and the process of making sense of the events and changes in their lives is ongoing. Medical System and Hospital Environment The medical system was in general described as relatively positive but all four participants also discussed short comings and problems. Many of these are related to budget restraints, staff shortages, high work loads, and the emotionally demanding work. Some problems seem to be related to training emphasis such as the depersonalizing interactions between some staff members and the injured person. A.'s experiences were somewhat different mainly because of her many years of experience as a health care professional in acute care. In this summary I focus mainly on the general ideas and concerns expressed by the family members, not the specific individual experiences. Environment. The four family members experienced the various hospital units somewhat different and experienced difficulties with procedures and staff at different points in their journey through the hospital. These differences seem to be related to factors such as: (a) pre-existing knowledge, experiences, and expectations; (b) the rate of change and progress of the injured person; (c) the bed their family member was assigned to; and (d) luck with respect to staff involvement. One family member had most difficulty in ICU, partly related to the reaction of some of the nurses to her active involvement (A.), while others felt most protected in this unit as a result of the close monitoring of the injured person and  100  the high staff-to-patient ratio (B., C , D.). One injured person was assigned to an isolation room throughout the hospital stay due to an infection and was therefore less exposed to the noise and busy atmosphere in I C U and N I C U ( D ) . Two family members had access to a family room in ICU/NICU which they described as extremely helpful for their own well-being ( C , D.). This family room provided them with a private refuge when they could not be directly at the bedside either because of some medical procedures being performed or because they needed a break. They consistently discussed that the Neuroscience Ward was old, cramped, and not a very pleasant environment. The transition from one unit to the next was generally a positive event for all participants because it indicated an improvement in the injured person's condition. However, for two participants (B., C.) Each of these transition was also "scary" because there was less obvious support in the form of machines or a high nurse-to-patient ratio. They adjusted quickly to the change with the help of assurance from the new staff and education about new and different routines. Staff. There was consensus among the participants that there were many caring, skilled, and professional staff persons in any of the disciplines they encountered. However, most disciplines also had members whose behaviour was difficult to accept and cope with. Some groups of professionals seem to have a higher percentage of these 'problem' members compared to other disciplines. The neurosurgeons, the rehabilitation professionals, and the social workers on the Neuroscience Team were generally perceived as very trustworthy and helpful. Doctors from other specialties and medical residents seemed to have the highest percentage of members who behaved in a manner that was experienced as negative by the family members. Among nurses there seem to have been a wide range of experiences for the participants. The most difficult behaviour to tolerate was bedside behaviour that depersonalized and objectified the injured person. Such behaviour included calling the brain injured person "a head" (short for head injured), talking in front of the injured person about them, seeing only one specific body part such as a fractured leg, not the person as a whole, not introducing themselves to the family members or the injured person, and not explaining to anybody including the patient what they were doing. Such behaviour did not only occur at the time when the injured family members were still comatose but also after they had regained consciousness. A l l participants expressed a belief that the comatose person might be aware of their surrounding or how they are being approached. They expected basic respect and friendliness and felt that it was not too much to expect that staff introduce themselves to the injured person and explain procedures as they are performing them. One family felt that the needs of the medical residents sometimes appeared to be more important than the needs of the injured person.  101 Another concern was how information was handled and how they as family members were supported. They agreed that many staff persons from various disciplines were excellent and were very supportive. Some, however, were not very forthcoming with information and family members had to ask repeatedly. Because they were aware of the stress that these staff persons were working under, they were torn between wanting to know the information and advocating for their injured family member and to not interfere with the work. A l l of them also encountered staff persons who were very prescriptive in their advice without listening to the needs, worries, and concerns from the family members. They resented being told to take time out, when they felt a strong need to be with the injured person. They felt that they sometimes were not accepted as the person they were and that they were not listened to. They agreed that the most helpful approach was that of active listening, unconditional positive regard, caring, suggestions that were geared towards their specific circumstances, and acceptance of their own choices even if they were different from the suggestions. Recommendations for the Hospital from the Participants The four participants discussed several recommendations and wishes for change in the hospital system. Some recommendations or wishes may not be possible to implement because these concern the system on a broader level. These include the wish for a wider range of options for follow-up care, especially for those injured people whose TBI resulted in severe impairments that preclude them from being accepted to the government-funded rehabilitation hospital. Currently there is little available in British Columbia for those individuals who still benefit from rehabilitation but are progressing very slowly and those resources that exist are private and therefore only accessible for those with funding through insurance agencies. Another wish was for a more modern and more spacious Neuroscience Ward. Changes are currently being discussed and hopefully will be implemented in the future. One family member expressed that this environment was very medical, including having pictures of CT scans of brains on the walls rather than more healing and normalizing pictures. The family rooms were experienced as extremely beneficial by those two family members who had access to those. However, there are only four family rooms for all of the ICU area with its approximately 50 or more beds in several different I C U areas (main ICU, N I C U , cardiac ICU, etc.). These rooms are not available for every family and if a family has access to a room, it may only be for a few days. However, at a time when the family members are trying to cope with extreme uncertainty, fear/anxiety, and trauma, it is difficult to have to share a general waiting area. This exposes family members to others in the same situation which may be more than they can cope with. One recommendation is therefore to have more  102  family rooms available, especially for those families that experience such severe trauma and whose injured or ill family members remain for a long period of time in ICU. Most of the other recommendations concern the behaviour and interactions of staff members. Most important are respectful and personal interactions of the staff members with the injured person and the family. They do not expect much time or energy but rather a change in attitude. It would not require more time for a staff member to approach the bed of an injured person and introduce him/herself and explain what they are about to do to the injured person: 'Hi, I am X, and I will look at your left leg.' Delaying a discussion of the prognosis until they are able to step awayfromthe bed also would not require more time. Another very important aspect of interaction/communication for the participants was the communication of hope. All of the participants needed support to maintain their hope. Offhand comments that indicated the loss of hope by a staff person were extremely difficult to deal with, even if the prognosis was guarded. Thefirstfew weeks after a severe TBI occurred are too early to predict the long term outcome. Length of unconsciousness or medical instability in the early stage of recovery are an insufficient predictor for the long term outcome. A.'s son remained unconscious for many weeks but once he started to wake up, he progressed rapidly and now learns to live with relatively mild residual impairments. It is a skill to provide family members with the truth, if the outlook is guarded while at the same time maintaining hope. It needs to be recognized that family members may very well be aware that complete recovery will not happen. However, they need to maintain their hope in order to continue coping with the events. Adjustment to the severity of the injury and the resulting residual impairments is a gradual process. All four family members indicated that they found it helpful to hear stories of previous patients with severe injuries who woke out of coma and whose functioning improved over time. Not every staff person in ICU/NICU has experienced previous patients with similar injuries and therefore it might be helpful to create a notebook in which several such stories have been collected. Consistency in approach, rules, and procedures was also important for the participants. One family member explained that the procedures that they had to follow because of the infection of the injured person varied over time without obvious reasons (at least these reasons were not explained to the family member). Such inconsistencies undermined the trust that they had in the system. However, being able to trust was an important coping mechanism for the family members. One family member suggested that it would be helpful if they would be assigned to one contact person to whom they could turn if they have questions or concerns. Once the injured person has been transferred under the care of the Neuroscience Team, this is available through several staff persons that  103 remain consistent with the injured person, such as the social worker and the rehabilitation staff. However, there does not seem to be a formal procedure which is followed with all patients. The staff in I C U is changing frequently and therefore such a consistent contact person would be even more valuable. General advice from the family members was that staff should refrain from objectifying and depersonalizing behaviour and from prescriptive suggestions for the family members. Instead, they suggest respectful interactions and an approach of "walking with" the family member. This included active listening, being fully present while interacting with the family member, unconditional positive regard, accepting the family member as experts who often may be very aware of their own needs, accepting the family members' choices even if these may be contrary to the staff person's own believes, and mamtaining hope even if the outlook is unfavourable.  104  C H A P T E R V : DISCUSSION Limitations of the Study Several limitations need to be discussed. The participant group was not representative of family members of TBI patients in general for several reasons. The study focussed only on severely brain injured individuals based on initial GCS and length of hospital stay. This measure is commonly used but is a very crude measure and does not predict the long term outcome after an injury. In this study two injured persons recovered substantially better than the other two although all four experience varying residual impairments. Interestingly, there were no substantial differences in experiences in acute care between those two chance groups. The small sample size does not allow a generalization to the severely brain injured population, much less to those individuals with mild or moderate injuries. However, the aim of this study was not to produce findings that can be generalized but rather to provide a rich description of individual experiences to explore a phenomenon that has been sparsely researched. The study relied on a convenience sample of volunteers and participation was limited to those who were living within the region and were able to speak English. This reduced the possibility of including minorities or individuals from different sociocultural backgrounds. Gender differences were not analysed and discussed in the findings because the small sample size and uneven distribution of one male and three female participants did not allow for comparison of possible differences. Some differences were noticed between the three female participants and the one male participant. However, differences in personal history such as familiarity with the medical system as a patient and family member may also account for the differences. The similarities between the experiences of the male participant and the female participants by far outweighed the differences. The nature of the differences was not so much related to the themes that emerged as more to the quality of expressed experiences. A l l four participants indicated that talking about their experiences was emotionally difficult. It is therefore possible that family members who agreed to be interviewed so close to the experiences in question might have different and possibly better coping skills and supports than some of those family members who declined since they were able to discuss their experiences. Time and financial constraints limited the number of participants to only four. The findings in this study only apply to those four participants. However, I attempted to describe the experiences of these family members with sufficient depth that readers can determine if their own experiences are similar or differing. The hospital where the participants were recruited is the main hospital for the acute care and treatment of severely brain injured individuals. This hospital has developed a highly specialized and trained team of professionals from many different occupations. This team is interdisciplinary in nature  105 and has a strong focus on working together, exchanging information, and continuously evaluating their own approach and implementing changes as the need becomes apparent. However, many hospitals in this province and in Canada in general do not have such a team and strong team approach, therefore experiences in these hospitals will probably be somewhat different. This study did not aim at providing an objective account of the family members' experiences. A n objective account would not have been possible because the process of interviewing itself is a constructive process between two individuals (Mishler, 1986). The beliefs, values, and expectations of each individual therefore influenced the construction of the family members' experiences and meaning making. Reflexivity and a conscious awareness of my own processes during the interviews and interpretation could reduce the influence of my own preconceived ideas but could not completely extract these influences from the final interpretations. I have attempted to reduce the influence of my own perspective through several means as outlined in the section on 'Trustworthiness'' (p. 38). Relationship to Past Research This study was exploratory in nature and therefore did not investigate a specific theory. The descriptions of experiences and events from the family members are subjective and not generalizable to family members in general. However, many of the descriptions and themes have been addressed or discussed in past research. These will be discussed in the following pages. Much of the existing research on family members of brain injured individuals addresses processes that occur many months and years post-injury. The information available about the early days and weeks after an injury is scarce and primarily quantitative in nature or based on clinical observations. The questions that were underlying this thesis were: (a) what are family members experiencing in the acute phase after the injury, and (b) is the viewpoint of the family members themselves matching clinical observations and results of quantitative research. In order to develop meaningful and helpful programs for family members we need to understand their experiences and reactions more fully. The most salient themes and patterns that emerged in the four interviews in this study showed strong emotional reactions (hope, joy, shock, fear, helplessness, anger, loss, and a sense to be needed), a common process of a quickly narrowing life focus on the injured person, and specific needs and coping efforts. The family members were focussed almost exclusively on the present and did not engage much in meaning making processes during these early weeks and months. Only one family member described a clear sense of purpose in the injury of her partner (D.) but this clarity changed over time as the severity of her partner's injury became more apparent.  106 Previous research and discussions described feelings of shock, difficulties understanding the new situation, anxiety, guilt, feelings of responsibility, and anger (Mejis, 1989). Lenehan (1986) discussed a sense of powerlessness, and being forced into a passive role at a time when the family members want to be active. The feelings of the four family members interviewed for this study match these clinical descriptions but additional information also emerged. The family members compared their emotional experiences to a roller coaster of wildly fluctuating emotions. Often seemingly conflicting emotions occurred at the same time such as anger at the system over a specific incident and gratefulness for the excellent care of their injured family member, or joy over a small sign of improvement and fear of the next day that could bring a decline in medical stability again. This roller coaster of emotions was described as exhausting and the family members expressed specific needs and described conscious and unconscious coping efforts to manage these emotional demands. They discussed that their tolerance for others' mistakes, actions, and behaviours was lowered compared to before these events. Their focus in life narrowed completely onto the injured person and they had great difficulties (possibly were unable) to relate to other people, events, or demands that were not directly related to the injured person. Some of the strongest needs expressed in this study were to maintain hope, to be with the injured person, to pray (not necessarily connected to a specific faith), to have control, to receive support, to receive information (about processes and procedures, not prognosis), respectful treatment of the injured person, and to receive assurance that the best possible care and treatment was provided. Hickey (1990) compared 12 studies about needs of families of critically ill patients (various diagnoses) that were published between 1976 and 1989. She found that across these studies the most frequently identified needs were related to information needs and to a lesser degree assurance needs. A review of individual studies (Bernstein, 1990; Engli & Kirsivali-Farmer, 1993; Mathis, 1984; Molter, 1979; Stover Leske, 1992) showed that all of the needs that were described by the family members in this study also appeared in other studies except the need for control. The importance ascribed to each of these needs varied somewhat from study to study. It appears that the descriptions of the four participants of the current study match the results of the quantitative needs assessment studies. However, the four participants in this current study emphasized the need to maintain hope strongly throughout the interviews and the focus group discussion while this particular need was rated very high in some studies (Molter, 1979; Stover Leske, 1986) but lower in others (Engli & Kirsivali-Farmer, 1993; Freichels, 1991). It is uncertain what might be underlying these differences but possibilities include differences in patient diagnosis and therefore in the level of uncertainty that the family members experienced, different time span (first 72 hours vs. several weeks of hospitalization), and differences in hospital programs.  107 The current study revealed some important possible connections between needs. Previous studies have not examined possible connections between the different needs nor have they attempted to develop a theory that might guide the professionals' understanding which needs might be most important in which situations. The four participants in this study all expressed that to maintain hope was a very important need, as was to receive honest information about processes, procedures, and the status of the injured person. However, they indicated that factual information that might indicate a worsening of the injured person's status or a poor prognosis was devastating for their ability to maintain hope. Maintaining hope, however, was an important coping effort during the time when the long term outcome could not be predicted yet. Hope was needed to maintain their own strength and mental and emotional stability. Therefore, it is not sufficient to provide information according to these participants. The information needs to be provided in a manner that still allows room for hope, even if the content of the information is in itself negative. It needs to be remembered that this was the case for information about injured individuals who were critically ill but not necessarily dying and which were in a phase of recovery after the injury were the final outcome was still very much undeterminable and could range from mild to severe impairments. The family members interviewed for this study reported that it was more important to receive information about processes and procedures than prognosis. In previous needs assessment surveys, the need for prognosis was often rated as very important. The difference between this past research and the four family members in this study may be related to differences in diagnosis and their acceptance that a prognosis was not possible for several weeks after a traumatic brain injury. Being regularly informed also appears to have provided the family members with some sense of control in an environment and situation where they had very little control. Participants not only wished to receive information about the status of the injured person and medical procedures but also about any task they could actively perform for the injured person. The need for assurance and the needs for hope and control also appear to be interrelated. Assurance that the injured family member would receive the best possible care and that this particular hospital was very experienced in the treatment of severely injured people supported the family members' hope that there was a chance for recovery. The family members needed to learn to trust the hospital staff because there was little they themselves could actively do for the injured person. The family members had to give up control to a large extent. Assurance about quality care, verbal as well as through professional and knowledgeable behaviour by the staff, was instrumental in their ability to give up control.  108 Many of the needs expressed by these four family members appear to be related to their effort to cope with a critical and stressful situation. The most salient theme was that of maintaining hope. Hinds (as cited in Burkhart, 1993) discussed that mamtaining hope is related to positive cognitive appraisal of a situation and is generally a significant human response to illness. Taylor (as cited in Durgin, Schmidt, & Fryer, 1993) argues that mental and physical well-being can be enhanced by "unrealistic optimism" (p. 51) and that the creation of positive illusions (hope) can help the individual to cope with an uncontrollable and threatening situation. Cognitive appraisal is a process that mediates coping processes (Beall Harris, 1989). Positive appraisal of a situation leads to a more manageable picture and the individual feels that he/she may be able to cope with the demands of the situation. The focus of this study was exploratory, not the explicit exploration of appraisal in such a prolonged crisis situation. However, it appears that the families were faced with a situation whose outcome could potentially be devastatingly negative (death or severe disability of a child or partner) and in which they had no direct control over this outcome. Conscious and rational appraisal of the situation and its possible outcomes would probably have been too threatening for the family members and could have resulted in ovemhelming emotional distress. Focussing on hope might have reduced this threat by framing the possible outcome positively. The need and the coping efforts aimed at maintaining hope are therefore possibly attempts by these family members to manage an unmanageable situation and to maintain their own mental and emotional health. Durgin, Schmidt, and Fryer (1993) discuss that professionals often belief that (unrealistic) hope and reality are mutually exclusive and that maintaining a high level of hope indicates a lack of reality. Fear exists that family members are not able to cope with the reality in the long term if they maintained unrealistic hopes. Professionals therefore often lean towards more negative predictions for the future in the belief that a better than predicted outcome will be more beneficial for the family members' coping and adjustment than a disappointment of their hopes. This conflict between the family members' need to maintain hope in order to cope with an uncontrollable situation and the professionals fear of the family members' unrealistic hopes leading to significant distress as a result of disappointment seems to have occurred for at least one of the participants (A.). Durgin, Schmidt, and Fryer argue that mamtaining hope not necessarily excludes realism. This argument matches the opinions expressed by the family members in this study. A l l four discussed that they needed to be able to maintain hope and at times consciously focussed on aspects that would support their hope at the expense of more realistic appraisals of a situation that would have undermined hope. However, they also were at the same time aware of the severity of the situation and a possible different and more negative outcome than they hoped for. Durgin,  109 Schmidt, and Fryer discuss that honest communication between professionals and family members about the role of hope and realistic appraisal of a situation is important to reduce unnecessary stressors for the family members as well as professionals involved with the care of the injured person. Denial was also mentioned frequently by the family members. Their denial appears to have been partially a conscious refusal to hear and consider information that was ovemhelming and might be detrimental to their own ability to cope. Denial and mamtaining hope were closely related for these four participants. Denial can be considered as one of the primary early coping efforts after the sudden onset of a serious illness or injury (Ell & Northen, 1990). Its purpose is to protect the individual from becoming overwhelmed by the negative and often uncontrollable aspects of the situation. Ell and Northon consider denial as one phase of the process of resolving a crisis and as a means to maintain hope. Romano (1974) discussed that denial was common for family members of brain injured individuals, even if they received counsellinug. She did not discuss any possible underlying mechanisms or the purpose of this denial. Concerns were raised about "grave repercussions for both, the functioning of the family over time and for the patients themselves" (p. 3). Sachs (1991) points out that denial also can become disruptive to the rehabilitation process if family members are unable to accept specific impairments and therefore are unable to address these in a constructive and helpful manner. A n example of such a situation might be ignoring inappropriate or aggressive behaviour by the injured person and therefore not setting clear behavioural boundaries. As with the issue of hope and unrealistic hope there appears to be a discrepancy between family members' use of denial as a protective mechanism and the professionals' fear of maladaptive denial. The four participants in this study explained that they often did not want to know the severity of the injury or the long term consequences. Too much reality and knowledge about the severity of the situation appear to have been detrimental to their ability to maintain their own hope and strength. They consciously avoided information that they felt they could not cope with and there were incidents when they interpreted events positively that also could be negative or neutral in meaning (adaptive protective mechanism). They all seem to have been aware of such 'denial' (one participant actually used the term 'denial') at some level and also gradually became more and more aware and accepting of the severity of the injury. Romano discussed that family members often reacted with anger at staff persons as part of their denial. The participants in the current study expressed anger at staff persons who behaved in a manner that undermined their hope. Such behaviour included (possibly) realistic descriptions of the situation and the outlook without adding that there still was hope for progress because it was too early to  110 draw firm conclusions. The family members also reacted with angry feelings when they sensed that staff did not believe their claims and interpreted them as chance movements. One family member in this study experienced such minimizing of her own observations from some nurses and doctors who seemed to have given up hope about her son's recovery. In the long run, her son did improve significantly, proving the pessimistic outlook of some of the professionals wrong. These differences between Romano's (1974) observations and the descriptions of the four participants in this study could be explained by several factors or processes. The selection process for participants was different. The participants in the current study were volunteers, while Romano included every family of a brain injured patient who was admitted to the rehabilitation centre within a certain time frame. Another factor may be the significant change that has occurred within the hospital system in the treatment of brain injured individuals and their family members in the 27 years since Romano's study. However, a significant factor in these different descriptions of denial by Romano and the family members in this current study may be related to the different perceptions of family members and professionals of the same process. The topic of differing perceptions between family members and health care professionals (as discussed in terms of hope and denial) is complex but also important because of the potential for creating unnecessary stress to both, the family members that are already trying to cope with an extremely difficult and complex situation and the professionals who are working daily in a complex and traumatizing environment. Another topic worth exploring is that of depersonalizing behaviour by staff members towards the injured person and sometimes towards the family members themselves. Such behaviour was extremely difficult to accept and tolerate by the family members interviewed for this study. It caused additional trauma and anger in an already difficult situation. It would be easy to state that staff members 'just have to learn' to be more personable and to interact in a more humane and appropriate manner with patients. It is important to investigate possible factors underlying such behaviour. Depersonalizing behaviour has commonly been connected to the phenomenon of burnout (Maslach, 1982). It is closely connected to emotional exhaustion and is a protective mechanisms. By creating an emotional distance between themselves and those they work with, the burned out individuals attempt to reduce further stress and demands in situations that are marked by intense interpersonal contacts. The work situation of staff members in an acute care setting and especially in I C U is marked by heavy work loads, extensive responsibilities but very limited authority and control (deRijk, Leblanc, & Schaufeli, 1998), therefore increasing the risk for burnout. Demanding personal contact and therefore a higher level of personal investment might be traumatizing to the staff person who is already only coping marginally.  Ill However, deRijk, LeBlanc, and Schaufel also discuss another possible cause for depersonalizing behaviour. It can also be viewed as 'default behaviour' in a situation that is marked by a high focus on technical interventions and interactions with individuals who are largely unresponsive. The nature of the environment (technical, mechanical, non-responsiveness of patients) fosters a technical and non-personal approach to the work. This may be further encouraged by the perceived power imbalance between medical personnel and patients in a traditional medical model environment. Other connections with past research also emerged in this study. Kozloff (1987) reported a reduction in the size of the social network of the injured person over time. This results in family members compensating and becoming the main source of support. One family member, whose son continues to experience significant residual impairments, already reported this tendency, only eight months post-injury. Such isolation and the associated compensation by family members contributes to isolation of the family in general because they have less time and energy for other pursuits, ultimately leading to a reduction in enjoyment in life (Knight et al., 1998). The question arises, if the risk for this isolation could be reduced by proactive interventions throughout the rehabilitation phase of the injured person. Family members may need support to develop a social network for the injured person. This could include assistance in educating friends about the impairments and how they can continue to interact with the injured person, and assistance in organizing activities that friends can do with the injured person. Sometimes friends may stay away because they do not know how to cope with the changes in their friend, how to interact with the injured person, and what to do with them. Several researchers discussed possible differences in burden on parents compared to partners of brain injured individuals (Allen, Linn, Gutierrez, and Wilier, 1994; Hall et al., 1994; Kreutzer, Gervasio, & Camplair, 1994a; Leathern, Heath, & Wooley, 1996, Lezak 1998). Although this aspect was not specifically investigated in this study, some findings support the notion of differences even in the early phase after the injury occurred. The distribution of family members was equally split between parents and partners. Both parents described how they and their spouses supported each other throughout these early weeks and months. They alternated in their moments of strength and weakness and reminded each other of staying in the present rather than worrying about an unknown future. One of the family members whose partners had been injured expressed that his best friend was missing in this experience: Well, missing your wife, you know, missing your partner, your best friend. You know you don't have all the things you used to anymore. This person is there and it's almost just like a stranger  112 sometimes  Like you're never ever going to get back to what you had, it's what it starts  feeling like after a while, you know ( B ) . The second participant whose partner had been injured was eventually confronted with having to decide how she would want to relate to the severely injured partner in the future. The injured person's parents wanted a transfer to Alberta where they live, so that they could provide support. The severe impairments of the injured person prevent any somewhat normal life as a couple and the participant was still young. She chose to stay in Vancouver and let go of her dream of a long-term partnership with her boyfriend other than as being a friend to him. It is conceivable that decisions about the level of involvement and support, or living arrangements have a different impact on partners compared to parents, especially when they are still young and at the beginning of building their lives. This question warrants a separate investigation to determine how family members can be best supported in such a decision making process. In summary, the information in this current study supported some of the previous research (needs assessment, experiences of family members after critical illnesses) but was able to provide more in-depth information. Issues that had been previously raised in research about family members at a later stage of the process of adjusting to brain injury were already noticeable in this early stage (social isolation, differences in experiences between parents and partners). However, this study could only provide the subjective descriptions of four individuals. Further research is needed in order to broaden the scope of this study, to explore implications for the hospital system, and to investigate connections between experiences in the early phase after the injury and the long term implications of having a family member with a severe traumatic brain injury. Future Research This study uncovered different aspects of the experience of family members initially after the injury. A first step in future research usually is to investigate if these findings apply to a broader population. Such research could be accomplished through a survey of family members. Family members that fall into different criteria such as those of individuals with mild and moderate TBI and those who never regain consciousness, or stroke, and brain aneurism could be included. Different hospitals also could be targeted and individuals from different ethnic background could be more easily included. The participants in this study reported that the interview was emotionally difficult as well as therapeutic. A survey that addresses the early days and weeks after the injury could also trigger unexpected emotional reactions. Care would therefore have to be taken in how the survey is administered. Follow-up support may need to be available to the participants.  113 If replication studies support the findings in this study, it would be worthwhile to investigate each of the individual topic areas such as the personal processes, needs, coping efforts, and meaning making processes and their possible interactions with factors in the hospital. Possible questions include: (a) What factors may play a role in the narrowing and especially the broadening of focus again? (b) When does a narrowed focus begin to be maladaptive and detrimental to the functioning of the individual and the family? (c) What kind of programs could be developed and implemented in a hospital? (d) How do the different needs interact with each other and how could they be met in the most cost-efficient manner? (e) What factors influence and increase or lessen denial reactions in order to prevent the development of nonadaptive and prolonged denial among the family members? (f) How do denial and hope interact in this setting and how can adaptive processes be fostered? (g) What is the role of depersonalizing behaviour by staff members and how could such behaviour be changed? (h) How do family members decide about the follow-up care and their ongoing relationship with severely brain injured persons? Further research about adjustment and adaptation processes from the initial injury through to several years post injury also could provide valuable information for the development of programs and support. Such a study could be structured with a combination of surveys, semi-structured interviews, and groups over a period of several years, initially with a small number of family members. The family members of brain injured individuals have so far received relatively little attention in research with the exception of the topic of long term burden because the main focus has been on the treatment of the brain injured persons themselves. However, as Lezak (1988) pointed out, brain injury is a family affair and rehabilitation efforts increasingly include family members into their programs to further improve the recovery chances of the injured person. It is time that we begin paying more attention to the needs of family members themselves throughout the process from the initial injury to many years post-injury. Implications for Practice Attention to family members to date primarily centres around their role as part of the rehabilitation team and long term care giver. Any support efforts or programs for family members that have evolved so far are based on trial and error in clinical settings. Many of these programs are seriously lacking funding because the mandate of hospitals is the sick patient, not the healthy family member. Programs are usually clinically developed by expert practitioners, often with little direct input from the family members. Comparing the information gained in the interviews in this study with the information from the needs assessment studies (Bernstein, 1990; Engli & Kirsivali-Farmer, 1993; Mathis, 1984; Molter, 1979; Stover Leske, 1992) shows the greater complexity of processes that are actually  114 occurring. Clinicians are often familiar with such stories from family members but research has not yet addressed these or supported these stories. This deeper level of understanding, however, is important in order to develop, implement, and evaluate support and treatment programs for family members which are truly helpful. Clinical impressions that are not supported by research can be misleading and inappropriate. For instance, staff members sometimes believe that it is important that family members learn to take time out for themselves and 'prescribe' such behaviour to family members. The family members themselves, however, may not yet have reached a point in the broadening process that would allow them to actually be able to act on such prescriptions. Therefore, the clinician prescribing such behaviour without being aware of possible processes occurring in the family member can cause unnecessary conflict and additional stress for the family member. Knowledge of possible processes allows the clinician to gauge better what type of suggestions might be helpful in a given moment and also provides guidance in how to offer suggestions. A l l four family members strongly objected to prescriptive advice by any professionals in the hospital but were open to gently offered suggestions. They expected that their choices would be respected and they hoped for collaboration and support. For clinical counsellors, psychologists, or social workers these expectations may not be unusual but clinical staff in hospitals is not necessarily trained in and familiar with a truly client centered approach. The medical model is more prescriptive than clientcentered in the tradition of Rogers (1961) who suggested that genuineness, unconditional positive regard, and accurate empathic understanding are instrumental in client-helper relationships. An increased understanding of the experiences of the family members will allow for development of more truly client centred approaches to their support and treatment in the hospital system. Telling the stories, reading the summaries, and discussing the themes in the group setting was described by all family members as very difficult and emotionally taxing but also as "therapeutic" and helpful in their own processing of the events and losses they incurred. A . pointed out that she often felt as if she had lost the son as she had known him. It was as if he or a part of him had died. This experience was confirmed by C. and D. in the group setting. Such ambiguous losses trigger grief reactions which are complicated by the fact that the loved one is still living, though often drastically changed in abilities and personality. Being prepared by staff members for the anticipated changes in and future challenges of the injured family members is only one aspect of the adjustment to having a family member with a brain injury. Telling their individual, personal stories, being listened to, and having the stories being understood and witnessed by clinicians is another aspect in the adjustment process of family members and allows for a deeper level of processing and therefore may foster adjustment. The  115  role of counsellors in the process of processing traumatic events, coming to terms with permanent changes in a loved one, and initiating changes to life style and expectations (adjustment) may be crucial for the long term ability of the family members to manage the burden associated with having a family member with brain injury. Most hospitals, especially acute care hospitals do not have funding for counsellors for family members. Social workers often attempt tofillthe gap but are frequently responsible for a high case load and many other duties in addition to providing emotional support such as discharge planning or researching and organizingfinancialassistance. Third party insurances to date do not provide much funding for the support and treatment of family members of the injured persons. However, this may be an area to consider changing. Supporting the family members and assisting them in their own best possible adjustment to the injury may improve the family members' long term functioning and therefore their ability to support the injured person. I would like to close with the words of one of the participants in the study: You feel very, very alone because I mean no matter, everybody, everybody's feelings and everybody's, everybody's going through their own little personal hell in a situation like this, you know. I mean people try to, put their, you know, — like their mothers and fathers trying to console their son and so on and so forth. But I think you can never forget that everybody is going through their own pain and their own little problems about the whole situation, you know. There were times where you know, I couldn't be around anybody. And there was times where I needed somebody around me, it was just all, it was all, I don't know what, what caused the difference, it was just sort of like a wave (B.) Talking to others was helpful for all participants. Who they were able to talk to (other family members, friends, professionals) and howfrequentlyand openly varied between the participants but a common thread was the need to be listened to . B: [Talking to others] "Actually that's one thing that brought me some comfort when I, way back in the beginning, I'd get on the phone and start talking to people and explaining what was happening and in a weird kind of way, it would make me feel better, you know, just, I, I could sit there and talk for hours and just, you know, being able to tell what's happening, blah, blah, you know...."(B.). Researcher: 'Were you making sense of it?" B: 'Yeah, I guess, and just mrning it around over and over and over in my head and, and verbalizing it." Researcher: "explaining, saying it to yourself."  116 B: "Yeah, in a way I think that's what I was doing. People would say, oh are you sure you don't mind talking about it. Actually, I feel better talking about it."  117 REFERENCES Acorn, S. (1993). Head injured survivors: Caregivers and support groups. Journal of Advanced Nursing. 18. 39-45. Acorn, S., & Roberts, E. (1992). Head injury, impact of wives. Journal of Neuroscience Nursing. 24(6). 324-328. Adler, P.A., & Adler, P. (1994). Observational techniques. In N . K . Denzin, & Y . S . Lincoln (Eds.), Handbook of qualitative research (pp. 377-392). Thousand Oaks, C A : Sage. Allen, K., Linn, R.T., Gutierrez, H., & Wilier, B. (1994). Family burden following traumatic brain injury. Rehabilitation Psychology. 39(1). 29-48. Beall Harris, R. (1989). Reviewing nursing stress according to a proposed coping-adaptation framework. 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Current relationship status. •  married/common-law  •  separated  •  divorced  •  single.  4. Education (please check highest level completed) •  grade school  •  high school  •  college  •  university  •  professional training (please specify)  •  technical training (please specify)  5. What is your relationship with the brain injured person? •  spouse or common-law  •  parent  •  sibling  •  child  •  other (please specify)  6. Information about your injured relative: a. length of stay in this hospital:  approximately from or:  weeks;  b. gender of your injured relative: male female c. age of your injured relative d. length of unconsciousness of your injured relative: e. other injuries (please specify): f. occupation of your injured relative prior to injury (Please specify if applicable)  132 Appendix F INTERVIEW GUIDE:  STAFF  "The Experiences of Family Members of Brain Injured Individuals in the Early Phase After the Injury: An Exploratory Case Study" General Research Question What meanings do family members make of their lived experiences of dealing with a brain injured family member in acute care? Opening Statement I am interested in learning about the experiences and meaning making process of family members in the early phase after a brain injury occurred. In order to understand the family member's experiences better, I would like to learn about the environment in which some of their experiences occur. I would therefore like to understand what the characteristic routines and procedures on the neurosurgery ward at the Vancouver Hospital and Health Science Centre are. Please feel free to take all the time you need to think about and answer my questions. I may ask you for more information or clarification throughout the interview to make sure I fully understand the environment and procedures of this hospital ward in general. Your participation is voluntary and you do not have to answer questions or discuss topics that you do not feel comfortable with. You may also ask me to turn off the tape recorder at any time or end the interview at any time during our conversation. Do you have any questions before we begin? Research Questions I would like you to tell me what the characteristic routines and procedures on the neurosurgery ward at the Vancouver Hospital and Health Science Centre, VGH-site, are. •  What is your position at Vancouver Hospital?  •  How long have you been employed in this position?  •  Briefly explain your role as it relates to the neurology ward?  •  What is the average stay of a severely brain injured person on this ward?  •  What are the typical procedures used with most brain injured persons?  133  What typical procedures do you and your colleagues use with most family members to help them adjust and cope? Can you think of anything not offered on this ward that you believe might help the family members of severely brain injured persons? Is there anything you wished you would not have to do?  134 Appendix G INTERVIEW GUIDE: FAMILY MEMBERS "The Experiences of Family Members of Brain Injured Individuals in the Early Phase After the Injury: An Exploratory Case Study" General Research Question What meanings do family members make of their lived experiences of dealing with a brain injured family member in acute care? Opening Statement Your brain injured family member has recently been a patient on the neurology ward of Vancouver Hospital for some time and you have visited regularly. There has been little research addressing family members' experiences in the early phase after a brain injury. I am interested in learning about the experience of being suddenly confronted with the traumatic brain injury of a family member and how you are making sense of it all and you are coping during this initial phase after the injury. Understanding what you experienced and how you coped can help in the development of appropriate services or support for families who are going through this recovery period. Please feelfreeto take all the time you need to think about and answer my questions. I may ask you for more information or clarification throughout the interview to make sure that I fully understand your experience. Your participation is voluntary and you do not have to answer questions or discuss topics that you do not feel comfortable with. You may also ask me to turn off the tape recorder at any time or end the interview at any time during our conversation. Do you have any other questions before we begin? Research Question My main question is " What is the experience of a family member in this early phase after a brain injury has occurred and how do family members make sense of the experiences?" Exploratory Questions I would like you to tell me the story of your experiences in the last several weeks or months have been since you first learned that your family member had sustained a traumatic brain injury. •  What happened at that moment and in the following days and weeks?  •  What were your feelings during these first days?  135 How did you get through these first days? What kind of things helped you, what was easy and what was difficult? What did you do to manage with the situation? What helped you to cope in this situation? What would have helped you if it would have been available in your family, commumty or the hospital? How has your life changed since the injury? How did you make sense of all that happened and the change to your life? What does this injury and the experiences following it mean to you?  


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