CHANGES IN PERSONAL RELATIONSHIPS AFTER A TRAUMATIC BRAIN INJURY
Submitted to the Graduate College of Stevens-Henager College in partial fulfillment of the
requirements for the degree of
MASTER OF HEALTH CARE ADMINISTRATION
Dr. Cheryl Chance
Dr. Marcia Ditmyer
All Rights Reserved
Purpose: Traumatic brain injuries (TBI) are caused by blunt force trauma to the head as seen most commonly in automobile accidents or falls. A TBI is also characterized by a CVA (stroke) or an aneurysm (a weakened blood vessel in the brain that hemorrhages). A TBI is also known as the “silent epidemic” because it is so common and many of its aftereffects are overlooked and go unnoticed. The purpose of this study was to analyze how personal relationships (family members, loved ones and caregivers) of three TBI survivors and how two caretakers of a relative with a TBI were affected. Methods: Eight assessments were utilized for TBI survivors that measured positive verses negative experiences, stress, elements of social relationships, time perspectives and self-actualization. There was an additional survey conducted for two caregivers of TBI survivors where they offered their perceptions on the state of their loved one affected with a TBI. Results: The results of this case study revealed that the three TBI survivors dealt with certain amounts of depression and anxiety and were at a disadvantage in re-building personal relationships. They, however, did score relatively well in areas of improving their personal relationships and were attempting to overcome the obstacles their injuries put in front of them. Conclusion: The results of this study will assist in furthering the acknowledgement and understanding of the aftereffects of TBI and how it impacts not only physical abilities but also personal relationships.
Chapter 1: Introduction
Traumatic Brain Injury (TBI) is defined as a physical affliction to the brain or disturbance in capacity of the brain. The affliction or disturbance happens as a consequence of the exchange of force like what happens in a motor vehicle accident or the impact of a blunt object such as a rock or as a result of a fall. Brain injuries that happen at birth or resulting from poisoning or anoxia/hypoxia are not included in this study (Ludwig, 2003).
Most of the training techniques and communal aids that are helpful to survivors of TBI are also helpful to loved ones and caretakers of TBI survivors. From a medical point of view, the TBI definition is very valuable because it is excluded from therapy and diagnosis (Ludwig, 2003).
Every fifteen seconds, there is a TBI in the United States (Brain Injury Association of America, 2004). TBI is sometimes called the “silent epidemic” because of the absence of study and consideration in lieu of its pervasiveness. TBI influences a great number of people in the US including the survivor, medical staff, family, loved ones and caregivers. The largest group of TBI survivors range from ages fifteen to twenty-four and those above the age of sixty-five (The National Institutes of Health, 1998). Males are two times more apt to suffer from a TBI. Minority ethnicities are also more likely to have a TBI than majorities are. Individuals with any experience in higher education have a lower chance of being survivors of TBI than people with just high school experience. There is also a convincing relationship between TBI and those with poorer economic means (Degeneffe & Lee, 2010).
TBI is a dominant public health issue in the US. It is supposed that over two percent of the US is maintaining their lives with disabilities as a result of a TBI. Current laws like the Traumatic Brain Injury Act, including government literature, have recognized the seriousness of this issue (U.S. General Accounting Office, 1998). The worth, difficulty and multitude of possible schemes for performing treatment for TBI survivors will be an ongoing discussion amongst various professionals (Mukherjee, Reis & Heller, 2003).
Statement of the Problem
This case study of research was designed to assess personal relationships experienced by three individuals affected by a TBI. There are a multitude of issues that increase the likelihood of changes in relationships for post-TBI patients (Rowlands, 2001). The post-TBI recovery establishes a multitude of complications for the injured individual, their loved ones and caregivers. The insults stemming from the TBI may influence many parts of a survivor’s life, resulting in numerous damaging occurrences (Rowlands, 2001). TBI interferes with individual growth and future plans, interrupting occupational objectives, personal relationships and one’s individuality (Rowlands, 2001).
TBI survivors are predominately males under the age of thirty-five who are usually highly functional and can carry out beneficial working and common tasks (National Institutes of Health, 1998). The objective of rehabilitation is to aid the survivors and loved ones of TBI survivors to build techniques in returning to their previous capacities of individuality and social roles. Depression has been recognized as a primary emotional dysfunction following slight and severe TBI (Hibbard, et al., 1998) and very likely following a mild brain injury (Busch & Alpern, 1998). This dysfunction only further expounds the complications of TBI recovery and when unacknowledged, it can be a contributing factor to many cases of substance abuse and marital or occupational problems (Bay, et al., 2002).
The purpose of this study was to analyze how personal relationships (family members, loved ones and caregivers) of three TBI survivors are affected using assessments that measured depression, anxiety, time-perspectives, self-actualization and relationship impacts. There was an additional survey conducted for two caregivers of TBI survivors where they offered their perceptions on the state of their loved one affected with a TBI.
Objectives of the Study
The objective of this study is to provide information from a small case study that might help those affected by and working with TBI to acknowledge that rehabilitation does not end after leaving the hospital. There are many other difficulties that families and loved ones of those affected by TBI must deal with. Within families of TBI survivors, caregivers must maintain a committed and supportive relationship with their injured loved ones. Productive assistance envelops therapy that is founded on empathy like compassion, comfort, advocacy, approval and closeness. Valuable aid is comprised of support in fulfilling operational assignments like doing common jobs, running errands, managing money and other activities of daily life (Degeneffe & Lee, 2010).
There are several assumptions related to this topic of study. The first was that the practical, behavioral and character changes after a TBI were more probable to have a vast and usually adverse effect on loved ones (Brooks, 1991). Another assumption was that other issues in dealing with post TBI are depression and anxiety in TBI survivors, their loved ones and caregivers. Thirdly, pre-existing family dynamics (positive or negative) that preceded a TBI most likely would continue during the recovery period and into the years following the injury. Finally, through determination, a survivor of TBI could work hard at overcoming their situation by accepting their disability and reconciling the close relationships that were affected by their injury.
Because this was a small case study rather than a large research project, no generalizations or principles could be made. Being that this was a case study, it could offer the readers ideas and suggestions in which they can further continue in the research of personal relationship effects in post-TBI.
Definition of Terms
- Traumatic Brain Injury (TBI) – an insult to the brain that is the result of outside physical impact that results in absolute or slight operational impairment or a change in behavior (sometimes both) that unfavorably damages an individual’s ability to function. TBI includes open or closed head injuries proceeding in deterioration in the following areas: perception, speaking and conversing abilities, remembrance, concentration, rationality, critical thinking, common sense, decision making, auditory, intuitive and functional capabilities, inter-relational conduct, basic physical performance and informational interpretation (School Transportation News, 2009). In the context of this case study, sometimes a “TBI” will refer to the TBI survivor.
- Anoxia – an affliction identified by the non-existence of oxygen to an organ or a tissue in the body that results in total or partial dysfunction (The Free Dictionary, 2013).
- Hypoxia – decrease in the oxygen source to an organ or tissue below the normal amounts regardless of sufficient flow to the affected area (The Free Dictionary, 2013).
- Personal Relationship – any relationship involving a TBI survivor and their immediate family, loved ones or close friends.
- Caregiver/Caretaker – an individual who takes care of the physical, psychological, mental and/or social needs of a TBI survivor. An example of a caregiver can be a physician, physical/occupational/speech/recreational therapist, nurse, nurse aid, neuro-psychologist or social worker. The most common caregiver for a TBI survivor in outpatient recovery is a close family member. However, some TBI survivors with no family are cared for by a professional home healthcare provider.
- Family Member – an immediate member of a TBI survivor’s family. An example of a family member is a father, mother, sibling, spouse, child or any individual in the extended family.
- Loved One – an individual who is close to the TBI survivor but is not a member of their family. An example of a loved one is a partner, fiancé or a close friend.
Chapter II: Literature Review
Humans are born with the basic, engrained sense of id. Id is the basic element of a character makeup that holds a person’s fundamental, innate motivations. According to Sigmund Freud, the id is the one integral part of human character that exists at birth (Cherry, 2013). Eventually, one begins to interact with those around them and forms relationships.
Relationships are all around us. Even if one does not have any relationship with their family, they have working relationships, casual friendships or acquaintances. Everyone can agree with the fact that they desire their relationships to remain intact, secure and functional. Relationships lay the foundation for interactions in one’s life. They affect how one views their world and how they respond to it.
Because humans are very social, we desire to connect and network with others. However, reality sometimes happens and relationships are severed, divided or broken. This can happen as a result of one’s own choice or by a situation beyond their control. Outside forces sometimes dictate people’s lives and can forever change their relationships with one another. Emotional and psychological distress can be a consequence of a severe or life threatening event. Survivors of this occurrence can show signs of intense anxiety, depression, tension, worry, uncertainty, fatigue and many other emotional and physical impacts such as Post Traumatic Stress Disorder (PTSD). This traumatic, life altering event will most likely have continuous difficulties with relationships, friendships and self-worth. However, many people have prevailed over traumatic experiences and have given encouragement to those who have also had similar life-altering situations (Psychology Today, 2013). One of the traumatic events that is a major contributor to contention in relationships is a traumatic brain injury (TBI).
Some of the most significant relationships people have are through their family and loved ones. The psychological, behavioral and character effects after a TBI will most likely have a serious and usually adverse effect on family members and loved ones (Brooks, 1991).
TBI Impact on Family
It has been acknowledged that there is an absence of TBI literature that looks into beneficial, tailor made family goals in dealing with post TBI survivors (Kosciulek, 1994). The latest research investigates the goals of a TBI survivor’s family, directing their attention on their anxiety and emotional stress. Several analyses have found a mixture in the outlook of the results in caregivers of TBI survivors ranging in seriousness of injury, continuation of existing with a TBI and various social interaction result models. Because very little research that has been done on the relational effects TBI has on family and loved ones, this literature review will attempt to fill that gap. This research study offers cross-sectional and long-term family result applications as well as other unique perspectives on the affects of TBI on parents, spouses, siblings and children (Perlesz et al., 1999).
The cross-sectional data on the emotional outcomes of family members of TBI survivors shows analyses that took place over three decades ago. These examinations were helpful in changing the perspective of rehab healthcare professionals so they could have a deeper influence on families of TBI survivors (Panting & Merry, 1972). As with other pioneering family result studies, uniquely tailored, unbiased questioning models and inquiries were utilized that restricted the normalizaiton, plausibility and accuracy of the data gathered. This foundational test was one of the first to acknowledge that many family members mentioned they were dealing with symptoms of stress, some of them needing sleep aids, and that spouses were more affected by TBI than parents were (Perlesz et al., 1999).
Early Implications of TBI
Another early study was of World War Two veterans who had sustained TBIs and their family members. This study conducted twenty-five years after the initial injury (Walker, 1972). Husbands who had returned to their homes with TBIs were better received by their spouses because their TBI was a consequence of patriotic duty instead of as a result of a drunk driving car accident. Confidence in a fair world (Lerner & Simmons, 1966) supposes that if someone performs in an upright and civil manner such as going to war for their country, they will in turn be shown the same civility by others. On the contrary, those who had sustained TBIs as a result of vehicle accidents were normally viewed to be at fault and were responsible for receiving their injury (Boss, 1987). This philosophy can be a cause of extreme marital stress if a spouse had received a TBI as a result of carelessness. Another important TBI study observed thirteen families of TBI survivors. The results of the study on the attitudes of family members contributed substantially in the perception of the intricate results of dismissal of feelings (Romano, 1974).
TBI Impact on Caregivers
Another early study conducted four and a half years post TBI showed a combination of worry and depression in a group of twenty-one caregivers who were mostly made up of mothers. Contingent on the method utilized, various amounts of “caseness” came about. On one approach, twenty-four percent of the care-providers revealed amounts of depression and forty-three percent expressed amounts of anxiety (Snaith et al., 1976). On another scale the resulting levels were fifty-two percent who reported depression and forty-eight percent who expressed clinical amounts of anxiety (Beck & Steer, 1987). One of the reasons for the difference in anxiety and depression levels in the two studies could have been a difference in culture, being that one was conducted in England and the other in the United States. An interesting fact is that forty-eight percent and seventy-six percent of the caregivers in both studies displayed no symptoms of tension (Mintz et al., 1995).
Long-Term Impact of TBI
Some long-term studies have followed the reactions of family members of TBI survivors for up to two decades post injury. These analyses have offered a better, clearer perspective of results. A study conducted in Denmark agreed with previous reports that a mother’s relationship with their child with a TBI was not as affected as marriage relationships were. There was still proof of frustration in parents who normally had unrealistic hopes about their injured children (Thomsen, 1974). The same researcher conducted a study of married couples ten and fifteen years after TBI and found that seven out of nine couples were separated. An intriguing fact was that the two couples who remained married were childless which proposed that there could be more stress on couples with children (Douglas & Spellacy, 1996).
TBI Effects in Different Stages
A test conducted in North America observed the results in families of TBI survivors who were involved in rehab therapy (Novack et al., 1991). The study measured amounts of anxiety and depression in forty-five family caregivers of different relations during three different time- periods. The first time-period was during the admission into a rehab facility. The second was at discharge from rehab and the final time-period was three months following discharge. Even though the study was limited to the first six months after the initial injury, forty percent of the caregivers reported levels of anxiety. Anxiety and depression levels decreased substantially between rehab and discharge. This was probably because the family members were better trained and equipped to handle the TBI in their loved one. These levels were upheld during the third time-period of three months after discharge. Furthermore, the study discovered that during all three time intervals the typical amounts of anxiety and depression were substantially under clinical levels. One of the reasons why the results of this study were way below others was because their benchmarks were different than other studies were (Perlesz et al., 1999).
TBI Effects on Spouses
Various researches have revealed that spouses and parents do not have considerably mixed amounts of stress in taking care of their spouse or adult child with a TBI (Allen et al., 1994; Brooks et al., 1987; Livingston et al., 1985b; Oddy et al., 1978a). However, many studies continue to discover that spouses caring for their spouse with a TBI are more likely to experience stress than parents caring for their children are (Gervasio & Kreutzer, 1997; Hall et al., 1994; Kreutzer et al., 1994b; Leathern et al., 1996; Mauss-Clum & Ryan, 1981; Panting & Merry, 1972; Rosenbaum & Najenson, 1976; Thomsen, 1974, 1984). The following studies demonstrate that both the amount and nature of distress and strain that parents and spouses of TBI survivors go through can be important in empathizing a family member’s stress.
How TBI Influences Parents
The first study concentrated on parents of their adults children with TBI. The examiners questioned ten survivors of TBI and one parent. Patterns of genuine adjustment were defined as the following: remaining optimistic and certain, maintaining healthy religious faith, responding to individual fortitude, growing in adherence and collaboration inside family functioning and obtaining outside communal aid. Applications in care-giving were classified as the following: offering consistent help and acknowledgement, offering physical and mental motivation, being a hands-on therapist, assenting and recognizing reality, offering continual counsel and instruction, resisting the tendency to overprotect, dealing with monetary stress and displaying symptoms of psychological burden and distress. Even though the time period following the TBI was between one and five years, the patterns that evolved were not related to the long-term, although some elements were more significant immediately following TBI than others are. The researchers expressed a necessity to tentatively confirm the patterns that emerged during the testing. More specifically, the examiners did not signify the difference between parental and spousal responsibility (Karpman et al., 1985).
More Impact on TBI on Marriage
Another study obtained data from thirty-one TBI survivors and their spouses that reinforced the difficulties that spouses experience. Wives defined a few important issues: alterations in their husband’s character, intellectual capabilities and absence of intuitiveness and submission to the reality of the injury, lessening of fiscal assets, absence of support, compassion and friendship and feeling inadequate in meeting the needs of their children. Husbands of a spouse with a TBI were most worried with their wives’ decrease in independence, character changes and anxiety, aversion to leave the home and alterations in conduct following the TBI. This research was also biased because the subjects were recruited from a TBI group therapy (Wilier et al., 1991).
Adapting with a TBI in Marriage
Additional TBI studies have looked into different issues of marital adaptation. Several factors have been discovered to have a serious effect on marriage stress and unhappiness, monetary difficulties (Hall et al., 1994), the seriousness of the TBI, psychosocial disorder of the TBI survivor, limitations in everyday physical tasks, the TBI survivor being a parent of young children (Moore et al., 1993), absence of help in caring for the physical needs of a TBI spouse (Kreutzer et al., 1994b), lower marital togetherness, additional marriage difficulties (Maitz, 1990, 1991) and responsibility adjustments (Henry et al., 1985).
TBI and Parental Roles
There was an Israeli study done on the effect of a spouse’s TBI on wives. This research observed the effect of apparent alterations inside the family following the Yom Kippur War in 1973. Ten women of husbands with brain injuries were more adversely changed by the individual, family and communal effects of the alterations in their husbands. The husbands had become more inwardly regressed and less independent, had diminished in their parenting roles and the wives had to fill in the responsibility of both parents. The wives also expressed more aversion to physical intimacy with their husbands and felt like they were socially disabled because many their friends had deserted them. This study was conducted using a small group and could not be considered as viable because most of the men with TBIs sustained very serious injuries and could not function without assistance (Rosenbaum and Najenson, 1976).
TBI, Marriage and Children
Another study of TBI effects on relationships discovered that just under half the wives in a group of nineteen wives and eleven mothers of grown children with TBIs related with the statement “I’m married but don’t really have a husband,” Furthermore, thirty-three percent of these wives had looked at marriage separation or filing for divorce. In light of the wives and mothers expressing existing higher amounts of aggravation, irritation and frustration with their TBI spouse or child, the study implied that mothers cannot divorce their children and had an enduring responsibility to take care of them. The results revealed that mothers tended to be not as depressed and annoyed than wives were and were possibly more agreeable to their commitment in their responsibility as a continual caregiver (Mauss-Clum and Ryan, 1981).
TBI Effect on Children
During the last forty years, many studies had been done on the effect on the psychological progression of children who had parents with psychiatric handicaps (Weissman, 1983). However, there have been very few studies done of the effects a parent’s TBI has on their child (Spanbock, 1992). One of the first studies done on these particular cases was in 1978. This unique study implied that children could be disregarded or maltreated by their TBI parent or even inadvertently overlooked by their other uninjured parent who may be unsuccessful in their efforts to create an equilibrium between their spouse’s and children’s needs (Lezak, 1978).
Long-Term Effects of Parents with TBI
In 1993, a study was made that uniquely focused on these cases. It observed twenty-four families where one parent was a TBI survivor almost six years post injury and at least one child was still at home prior to the trauma. Over ninety percent of the families expressed that the children underwent some unfavorable, difficult character alteration after their parent’s TBI. Many of the families stated that there was some unhealthy change in the TBI parent’s capacity in their parental role. Almost half of the families stated a growth in relational difficulties between the TBI parent and the children. A few of families revealed there was some misbehavior and psychological issues in the children. The major determinates for the relational changes between children and the injured parent were the gender of the parent with the brain injury, ineffective parenting by either parent and depression in the parent without the TBI (Pessar et al., 1993).
This study focused on the relational impact of TBI survivors and their families. There was compelling evidence that TBI did have an adverse effect on family members, whether they were caregivers or not. As of now, the majority of TBI family outcome studies addressed only primary care-providers. The importance of this study was to focus on relationship outcomes of spouses, parents, children and siblings (Perlesz et al., 1999).
TBI will continue to be a thorn in the side of every care-provider of the survivor and the survivor’s relatives and loved ones. There is a need for additional research into this area. However, many rehab facilities offer psychological aid and communal support for those affected with TBI. Even though the actual injury cannot always be prevented, the help and support offered following the injury can continue to provide for secure, healthy relationships.
Chapter III: Methodology
This chapter will outline the methods used in this study. The design, participants, and instrumentation used will be discussed. This is followed by the procedures, data collection, and then the chapter concludes with discussion on the data analyses.
The design was a case study research. A case study research is designed to offer awareness and perception to a very involved concern or subject and can present understanding or enhance the substance of previous knowledge found in past studies. Case studies highlight comprehensive research that is dependent on certain occurrences or boundaries and how they relate to one another (Yin, 1994).
Three former TBI patients from Craig Hospital located in Englewood, CO were recruited for this study. In addition, two other individuals who were care-providers and relatives of a TBI survivor volunteered to participate. All the participants partook in several questionnaires.
Eight questionnaires were used to collect data for this project. These are outlined below.
- 1. Satisfaction with Life Scale (SWLS)
The Satisfaction with Life Scale (SWLS) is an assessment of life satisfaction that was created by Ed Diener and his partners (Diener, Emmons, Larsen & Griffin, 1985). Life satisfaction is one aspect in the more universal fabric of personal happiness. Methodology and studies from areas not included in rehabilitation have recommended that personal happiness has at least three ingredients: positive affective appraisal, negative affective appraisal and life satisfaction. Life satisfaction is predominantly from affective appraisal because it is guided more by intellect than by emotions. Life satisfaction can be appraised uniquely to a specific realm of life like family or work or in a broader spectrum. The SWLS is a broad assessment of life satisfaction (COMBI, 2013).
2. Cognitive Emotion Regulation Questionnaire (CERQ)
The Cognitive Emotion Regulation Questionnaire (CERQ) is a multi-faceted survey that was designed by Dutch professors Drs. Garnefski and Kraaij from Leiden University. It was created to classify the cognitive emotion regulation methods (or cognitive management approaches) individuals utilize after going through an unfavorable situation or a crisis. As opposed to other coping scales that do not clearly separate a person’s thoughts from their actions, the CERQ focuses specifically on one’s thoughts after a traumatic event (Garnefski & Kraaij, 2007).
The CERQ is a simply conducted, individual-opinion survey. It was developed on an intellectual and observational belief and assesses nine separate cognitive management approaches. The CERQ allows the researcher to recognize personal management approaches and contrasts them with baseline results from different sociological test groups. Additionally, the CERQ allows the convenience to review relationships between the use of precise cognitive management approaches, temperament diversities, psychoanalysis and additional issues (Garnefski & Kraaij, 2007).
3. Scale of Positive and Negative Experience (SPANE)
The Scale of Positive and Negative Experience (SPANE) is a very short twelve item survey. Half of the questions are dedicated to positive experiences and the other half are made to measure negative experiences. Furthermore, SPANE can assess emotions like physical gratification, assurance, significance, agony and lethargy. The questionnaire can be a beneficial tool for those who go through a mediation to develop their positive emotions. The largest benefit of the SPANE questionnaire was that it utilized various universal emotions like “’positive”, “pleasant” and “negative”. This gave room for the SPANE to follow the entire spectrum of positive or negative emotions and feelings that a participant can experience in lieu of making a complex account of features to completely recall the difference between good and bad emotions (Diener et. al, 2010).
4. Perceived Stress Scale (PSS)
The Perceived Stress Scale (PSS) was the most broadly utilized psychological scale for attaining the perception of stress. It was a discernment of the level to which circumstances in an individual’s experience were measured as stressful. Factors were built into the PSS in order to understand how inconsistent, contrary and burdened people discovered their lives to be. The spectrum also involved several particular questions about ongoing amounts of qualified stress. The PSS was built for utilization in communal groups with the lowest education level of eighth grade. The questions were very clear to comprehend and every choice was easy to understand. Furthermore, the queries were of a typical character and thus could be understood by all ethnicities and people with different backgrounds. The questions were stated in a way to respond to emotions and reflections during the past month (Cohen, 1994).
5. Flourishing Scale (FS)
The Flourishing Scale (FS) involved various elements on social relationships such as enjoying contributing and beneficial relationships, supporting the happiness of others and appreciating the respect of others. The questionnaire also contained concepts of obtaining a determined and fulfilling life, being involved and active in one’s pursuits, utilizing dignity and confidence and feeling capable and adequate in the pursuits that were important to the participants. In this manner, the FS measured important elements of social–psychological activities from the perspective of the respondent (Diener et. al, 2010).
6. Awareness Questionnaire (AQ) – TBI Survivor
The Awareness Questionnaires (AQ) was broken down into two separate surveys, one for the survivor and one for the family member/caregiver. The AQ was designed as an assessment tool for altered individual perception or impaired self-awareness following a TBI. Altered individual perception of resulting damage was usually noticed in individuals who were survivors of slight to significant TBIs. Specific altered individual perceptions can prolong and disrupt a healthy rehabilitation process by restricting the survivor’s desire for therapy or developing into a choice of irrelevant long-range objectives. The severity of altered individual perception was a serious determinate in assessing the results in the post-TBI experience. Some researchers have discovered that the extent of altered individual perception was evident in returning to the work force following a TBI (Sherer et al.,1998). Given the significant value of altered individual perception when a TBI survivor returns to work, it was crucial to have dependable, accurate assessments of altered individual perception (COMBI, 2013).
7. Awareness Questionnaire (AQ) - Family Member/Caregiver
See Number 6 above.
8. Zimbardo Time Perspective Inventory (ZTPI)
The Zimbardo Time Perspective Inventory (ZTPI) was a sixty-one question survey that measured time perspectives and assigned four different categories based on the results: Future-Orientation, Past-Orientation, Present-Hedonistic Orientation and Present-Fatalistic Orientation. There were sometimes additional sub-characteristics inside the future category, like respondents who centered on devising and persisting on long-term aims or on a shorter-term outlook where the priority was in meeting time limits. However, in order to attain more exact hypotheses, a researcher may assign respondents different results on each of the future categories and interpret the information depending on subcategories within the Future-Orientation (Zimbardo & Boyd, 2008).
Although each of the above assessments were not designed to specifically apply to TBI survivors and their families (with the exception of the AQ), they can be beneficial in providing proof that a TBI disrupts personal relationships.
The eight questionnaires were used to collect data from participants. This included various elements of the severity of depression, anxiety, perceptions on time and other factors that contributed to the loss of a relationship as experienced by TBI. This research case study was done in mixed research form which will be explained in the data analysis section. The results of the surveys were in quantitative form and qualitative research was used to describe the results in detail. All questionnaires have been previously validated and have been used in studies previously. While they were not designed specifically for TBI survivors and their families, they can provide valuable information.
These questionnaires were sent in e-mail form where the participants were directed to a link and filled out the surveys. The results of the surveys were analyzed in strictest confidence. The IP addresses were unknown and therefore every participant remained anonymous to the tester, eliminating any forms of bias.
The data was analyzed using the mixed method of both quantitative and qualitative analysis. Quantitative research depends largely on gathering numerical results (Johnson & Christensen, 2003). Qualitative analysis estimates or describes. It does not calibrate the features, nature or character of the results or events (Business Dictionary, 2013). Mixed model research is the newest form of research where quantitative and qualitative approaches, designs and additional paradigm standards are mixed inside a section of the study or cross over two stages in a case study (Johnson & Christensen, 2003).
There are two main advantages of the mixed model method. The mixed model develops as a blend or merger of qualitative and quantitative analysis that exhibits parallel advantages and few weaknesses. When two concepts are utilized to concentrate on the same idea, they offer identical results. This shows more complete evidence of the results. Another advantage of the mixed model method is to achieve one group of results with another, to broaden a group of results or to uncover something that might have been overlooked if only a quantitative or a qualitative method had been utilized (Johnson & Christensen, 2003).
Chapter IV: Results
The following is a summary of the results that were found after conducting the following surveys: The Dyadic Adjustment Scale (DAS), Family Adaptability and Cohesion Evaluation Scale III (FACES III), Hassles and Uplifts Scale, Perceived Stress Scale (PSS), State Trait Anxiety Inventory (STAI), the Awareness Questionnaire (self and family forms) (AQ) and Beck’s Depression Inventory (BDI).
Satisfaction With Life Scale (SWLS)
SWLS results were gathered by assigning numbers to the answers. For the five questions the responses were added up using a scale of one through seven (Figure 1). For example, the answer “strongly agree” equaled seven, “agree” equaled six and on down the line until “strongly disagree” equaled one. After all answers were added up, the results were obtained. Depending on the range of the total score, the results were as follows: thirty-one through thirty five was extremely satisfied, twenty-six through thirty was satisfied, twenty-one through twenty-five was slightly satisfied, twenty was neutral, fifteen through nineteen was slightly dissatisfied, ten through fourteen was dissatisfied and five through nine was satisfied (Diener, Emmons, Larsen & Griffin, 1985).
Figure 1. Of the three participants, only one scored as slightly “satisfied”, where the other two scored equally in the “dissatisfied” range.
Cognitive Emotion Regulation Questionnaire (CERQ)
When completing the CERQ, the respondents filled out the questionnaire using five answers (Figure 2). Values were then assigned to the answers as follows: “almost never” equaled one, “sometimes” equaled two and so forth until “almost always” equaled five. Depending on the answers, they were split up into nine separate categories: self-blame (blaming oneself for what happened), acceptance (recognizing what happened), rumination (constantly thinking about emotions and thoughts of the negative event), positive refocusing (thinking about enjoyable things instead of the negative event), refocus on planning (thinking about how to handle the negative incident), positive reappraisal (securing a positive implication to the negative event in order to improve as a result), putting into perspective (thinking of the negative event as not as serious when compared to other events), catastrophizing (purposefully focusing on the trauma of the negative event) and other-blame (blaming others for the negative event).
Figure 2. According to the above results, the two highest categories the participants responded to were acceptance and positive reappraisal.
Scale of Positive and Negative Experience (SPANE)
The SPANE can be categorized into positive and negative feelings and can also be utilized to obtain a total “affect balance score” (Figure 3). Usually extroverts scored higher on both subcategories and introverts scored lower. In the “Positive Feelings” (SPANE-P) score, the scores were added differing from one through five, for the following six emotions: positive, good, pleasant, happy, joyful and contented. The total score differed from six to thirty. In the “Negative Feelings” (SPANE-N) score, the scores were added up differing from one through five for the following six emotions: negative, bad, unpleasant, sad, afraid and angry. This total score also differed from six to thirty. In the “Affect Balance” (SPANE-B) score, the “Negative Feelings” score was subtracted from the “Positive Feelings” score. The difference varied between negative twenty-four (the most unhappy possible) and twenty-four (the highest “Affect Balance” score possible). If a respondent scored a twenty-four, they seldom or never had any of the negative feelings listed and if they scored negative twenty-four, they most likely or always had all of the negative feelings listed (Diener et. al, 2010).
Figure 3. The results of the SPANE indicated that the average participant had more positive than negative feelings. The results of the “Affect Balance” score were also positive and revealed that the participants lied in the upper eighty-four percent of the ratio, meaning they were most likely to be happy.
The Perceived Stress Scale (PSS)
PSS results were gathered by assigning numbers to the answers (Figure 4). For the four questions with positive results, the responses were reversed. For example, zero equaled four, one equaled three and so forth. After all answers were added up, the results were obtained. The closer the score was to forty, the more probable it was for the respondent to acknowledge that their surrounding obligations were greater than their capacity to manage them (Cohen, 1994).
Figure 4. The Perceived Stress Scale revealed interesting results. One of the respondents scored particularly high on this survey, while the others were fifteen or more points below. This most likely concluded that TBI survivors dealt with multiple levels of stress in their lives, whether it was family situations, work or school related.
The Flourishing Scale (FS)
In the Flourishing Scale, the responses were assigned numbers (Figure 5). For example, “strongly agree” equaled seven all the way down to “strongly disagree”, which equaled one. The probable score ranges were between eight (the lowest) through fifty-six (the highest possible). The closer the score was to fifty-six, the more likely the respondent possessed multiple cognitive and emotional support systems and stability.
Figure 5. The above scores revealed that two of the participants’ results were the highest possible on the scale while the third participant scored slightly lower at thirty-eight.
The Awareness Questionnaire (AQ) Self-Form and Family Form
There were two AQs included in this study: the Self-Form (Figure 6) that was meant to be filled by a TBI survivor and the Family-Form (Figure 7) that was meant to be completed by an unrelated person and their separate relative who had a TBI. A TBI survivor who had a lack of self-awareness rated themselves as greatly developed in cognitive, behavioral, and motor functioning. The scores were represented by numbers and then added up to obtain the results. The closer the score was to eighty-five, the greater the improvement of self-awareness was or the greater a relative’s perception of their family member with a TBI was (COMBI, 2013).
Figure 6. Awareness Questionnaire completed by 4 Participants.
The AQ Self-Form was the only survey where there were four TBI respondents. They were asked questions that pertained to how they functioned before and after their injury. Some of the deficits that the majority of the respondents experienced were living independently, vision, concentration, memory and organization. All these issues could affect their personal and family relationships. The scores revealed that not all respondents had reached a level of self-awareness. Some scored ten points close to the ideal appearance of self-awareness, while others still needed much improvement (COMBI, 2013).
Figure 7. The Family-Form was completed by a caregiver of a family member with a TBI.
Some of the issues identified in this survey were problem solving, memory skills, goals, ambitions, expressive thinking, short-term memory, planning, feelings of control and emotional adjustment. All these deficits would undoubtedly present obstacles in adjusting to personal relationships and daily functioning after a TBI (COMBI, 2013).
The Zimbardo Time Perspective Inventory (ZTPI)
The ZTPI was a very complex sixty-one question survey (Figure 8). After the questions were gathered, they were placed on a scale depending on the respondent’s answers.
Figure 8. Zimbardo Time Perspective Inventory Results
According to the above results, the participant’s average scores were as follows (the scores in parentheses were the average scores in the five categories according to the Time Paradox website): Past-negative was 3.03 (3.0), Past-positive was 3.3 (3.22), Present-fatalistic was 1.7 (2.33), Present-Hedonistic was 3.98 (3.93) and Future was 3.74 (3.38). This will be discussed further in the next section. This shows that the participants scored relatively average with those tested on the Time Paradox website (Webb, 2013).
All the previous charts depicted the results of surveys that were conducted to reveal evidence that there are differences in relationships between a TBI survivor and their close relatives. One of the restrictions of this study was the low number of those surveyed. However, the results clearly depicted that some TBI survivors still experienced depression while others seemed to overcome the defects that result from their injury.
Conclusion and Recommendations
The purpose of this research paper was to propose a perceptive assessment of the inter-relational results of families and survivors of TBIs (traumatic brain injury) (Perlesz, Kinsella & Crowe, 1999). The Objective of this study was to give an impression to those influenced by and working with TBI survivors to recognize that the rehabilitation experience does not end after discharge from the hospital. There were many other hindrances that families and loved ones of those affected by TBI must continue to manage. Inside families of TBI survivors, caretakers must nurture a faithful and accommodating relationship with their injured loved one. Active assistance should be a part of therapy that is based on sympathy, generosity, compassion, well-being, support, confirmation and emotional and physical closeness. Beneficial aid is made up of encouragement in accomplishing functional tasks such as completing every-day pursuits, specific duties, maintaining financial security and other tasks in everyday life (Degeneffe & Lee, 2010). It was hypothesized that the results of this study would reveal that there were compelling changes in close relationships between relatives and close friends of those affected with TBI.
After conducting several surveys that were completed by TBI survivors and caregivers, the results could support the purpose and objectives of this study. There were also four assumptions that could be made about this study. The first was that the realistic, behavioral and personality differences after a TBI were more likely to have a large and usually unfavorable outcome on personal relationships (Brooks, 1991). Another assumption was that other matters in managing relationships in the post TBI experience are depression and anxiety among TBI survivors, their loved ones and caregivers. Thirdly, former family dynamics (positive or negative) that foreshadow a TBI would most likely continue during the recovery period and into the years following the injury. Finally, through perseverance, a survivor of TBI could endure and conquer their situation by accepting their defect and reconciling the close relationships that were affected by their injury.
An open-ended questionnaire was conducted to assess what the TBI survivors felt on certain issues. The TBI respondents came from various backgrounds and lifestyles and were either in their early twenties or a few years younger when their injury occurred which were mostly the result of car accidents. When asked about the most significant changes they experienced after their TBI, one respondent stated that they were more agitated and depressed. Another respondent stated that they had to adjust their lifestyle to fit their injury. Another question asked, “What were the major issues you dealt with during rehab?”. Some of the responses were anger, guilt, rage, re-learning how to live, read, write and get back to normal. The relationships that were most affected by their TBI were their family and friends. A very interesting response was when the TBI s were asked what they would be doing now if they had not been injured. Two responded that they would probably be dead or dealing with substance abuse. Finally, when asked what they would change about their current situation, one responded that they were focused on developing themselves and recovering fully.
The results from the SWLS revealed that the majority of the respondents were dissatisfied with their lives. Respondents in this range experienced several situations that did not turn out well or several other circumstances that went very badly. If a respondent’s unhappiness was a reflection of a current circumstance like grief, divorce or difficulties at work, they would most likely revert back to their previous position of increased happiness. However, if the respondent experienced repeated situations of continual dissatisfaction, they would need to seek intervention. To make this possible, the change must happen in demeanor and cognitive arrangements and most likely in their lifestyles. If decreased degrees of life satisfaction continued, they could reveal deeper meanings. Extreme life adjustments may be needed for change to occur. Another reason for the lower stage of life satisfaction could be that their grief was a source of interruption. Taking the opportunity to speak to a trusted friend, family member, pastor or counselor could usually help tremendously in positive growth. However, one must remember that helpful change is a personal choice (Diener, Emmons, Larsen & Griffin, 1985).
To comprehend SWLS scores, it was beneficial to acknowledge some factors that make up many people’s perception of satisfaction. Social relationships are one of the top affects on one’s happiness. If a respondent’s SWLS scores were high, they usually had a devoted and trusting network of family and friends. It is true that if one loses a close companion or family member, they may be dissatisfied with life for a time. However, if they were resilient, they would come back to their former state of life satisfaction (Diener, Emmons, Larsen & Griffin, 1985).
Another consideration that determined SWLS scores was work, school or accomplishment in a meaningful responsibility like a stay-at-home-parent or a grandparent. If someone relished their role, whether it was voluntary or involuntary, and believed that it was purposeful and vital, this also added to satisfaction with life. Life satisfaction could be lowered if one’s performance at work was not going as well as a result of bad situations. When an individual possessed meaningful aims but felt like they were not making enough headway, this could also result in life dissatisfaction (Diener, Emmons, Larsen & Griffin, 1985).
A final contribution to life satisfaction was one’s individual self, which can be their satisfaction with their personality, religious or spiritual life, education and development and extracurricular activities. For most, these are many of the highest origins of satisfaction. Yet, when these causes of individual value are discouraged, they can become dynamic origins of dissatisfaction. It is true that there are extra areas of satisfaction and dissatisfaction. Several which are frequent to most people are health while others are specific to each person. Most individuals were aware of the determinants that result in their satisfaction or dissatisfaction. However, one’s personality disposition, if they are more apt to be happy or unhappy, may influence their outlook (Diener, Emmons, Larsen & Griffin, 1985).
There is not a perfect fix for life satisfaction. However, there is a process with several interventions. With time and hard work, one’s life satisfaction tends to rise when they are dissatisfied. Normally, those who experience loss and grief are restored in time. Those with dissatisfying relationships or who are unhappy at work usually make alterations over time that will develop their satisfaction. An important element of happiness, as previously mentioned, was social relationships. An additional factor is to have meaningful objectives that originate from individual principles and to make improvements to reach those objectives. For most, they need to feel a part of something bigger than they are where they can feel supported and connected. When one is persistently dissatisfied, they need to focus inside themselves and find out where they can cultivate more helpful outlooks and perspectives (Diener, Emmons, Larsen & Griffin, 1985).
In the CERQ results, the top two categories the respondents scored in were positive reappraisal and acceptance. The positive reappraisal approach invokes mindfully attaching a positive signification to a specific circumstance in order to achieve personal growth, imagining that the situation made them resilient and focused on the good, not the bad. Those who scored high in this area consistently utilized Positive Reappraisal as a tactic. Although this method was a positive management strategy, something must actually be done about the current problem (Carver, et al, 1989; Spirito, Stark & Williams, 1988).
Acceptance was the second highest score in CERQ. It indicated that the individual had relinquished themselves to the situation and had accepted it. Understanding that it cannot be altered and life continued. Even though acceptance was usually a good strategy, a higher score in this category could reveal a kind of surrender in the mentality of not believing that one was able to change the situation, a negative outlook of saying “It is what it is” (Carver, Scheier &Weintraub, 1989).
The results of the SPANE revealed that the three participants involved in this case study illustrated positive feelings and were more likely to not have negative feelings based on the Affect Balance score. This also showed that they were doing well in their post-TBI experience and well on their way to an enjoyable, optimistic and satisfied life.
The Perceived Stress Scale revealed interesting and similar results. One respondent scored higher on both surveys, while the other two were considerably lower. This most likely revealed that TBI s dealt with different levels of stress in their lives, as did non-injured people.
The Flourishing Scale revealed that the respondents obtained several mental and emotional support systems and a balance between the two. This established that their futures were secure and they would therefore prosper under their current mentality. Their relationships would remain productive, to feelings positive and they would possess importance and ambitions in their life.
The Self-Form of the Awareness Questionnaire revealed personal, inward perception of a TBI . The Family-Form revealed uncovered issues that the TBI might not have been able to recognize. Because of the difference in perception between the TBI and a family member, these deficits would indeed present obstacles in adjusting to personal relationships and daily functioning after a TBI (COMBI, 2013).
In the Zimbardo Time Perspective Inventory, every category of time tendency is associated with compromise, advances verses declines and treatment in a social circumstantial setting where the participant was operating at a certain time in their lives. The adaptation between circumstantial, fundamental or schematic requirements and the individual’s time perspective had to be considered so the time perspective inclination may have been slightly different from others. The core belief regarding the variations in individual’s time perspective was the regard for the most suitable elements that impacted one’s choices and behavior (Zimbardo & Boyd, 2008).
The participants in this case study scored the highest in the present-hedonistic and future-oriented categories. A present-hedonistic person was easy-going, cheerful, appreciated things that offered instantaneous gratification and averted situations that included a lot of work, labor, preparation or discomfort. This person existed to absorb a pleasant life and could sometimes expose themselves to certain types of risks partly because they did not completely regard the realism of adverse results. A present-hedonistic person also looked for revitalization and adventure. They were susceptible to various inclinations, unconcerned with the possibility of diverse results. These individuals directed their attention to present actions and deep-seated inspirations, seldom on consequence and exterior-driven conduct of tasks. They were susceptible to being engaged in endeavors where temporary-lived payoffs caught their interest more so than long-lasting unfavorable results of careless conduct. They were more inclined to perform below average scholastically; usually when they were compelled to operate in a future-oriented setting. Nevertheless, present-hedonistics performed very favorably where action was needed and exact details were vital. They were outstanding in certain categories of innovative jobs or pursuits that required prompt reactions like video games. They usually thrived in areas of sports, favorite pastimes, stimulating activities, personal closeness, social gatherings and were very passionate about life. On the opposite end, present-hedonistic people were more feeling oriented, resilient, short tempered, sometimes disturbed social interactions and acted in unpleasant manners, were sometimes neglectful, culpable and disruptive (Zimbardo & Boyd, 2008).
A future orientated person’s choices were not usually established on actual, practical features of real-time psychological circumstances but rather more on their foreseen, conceptual outlooks of future results of alternate activities. Their outlook focused on “if-then” interpretation, anticipation, rational calculation, thinking backward from thought up objectives to beginning origins and progressive pursuits from beginning to end. There was an understandable interest for the results of their behavior, consideration for efficiency, duty and enhancing their goals. Future oriented people tolerated setbacks of immediate joys to enjoy longer-range aims. They were also eager to devote work and assets to ongoing interests that had future outcomes and could withstand undesirable present circumstances that had the possibility for future payoffs. Future oriented people were best at analytical and philosophical thinking. They were capable of deterring appealing amusements and preoccupations that were seen as fleeting desires or time dwindling, like pleasures and other activities that exhausted time when there were too many tasks to work on. On the negative side, a future oriented individual was not able to obtain pleasure in current, temporary, valuable pursuits and enjoyments. They sometimes had more complications than other time types with close relationships because they flourished in a contained and setting of certainties, where negativity was absent. One of their main objectives were maximizing productivity by achieving more in less time. By doing this, they would exercise many time saving applications and operate time regulating activities. When their aims were reached but were still not ideal, a future oriented person might feel like they had labored and became profitable in a worthless endeavor. This could give them an outlook of subjective insignificance of their life’s value (Zimbardo & Boyd, 2008).
Although the above mentioned time perspectives sometimes contradict themselves, they actually support one another and do not cross over in an individual’s experience. The fact that the participants in this case study were present and future oriented, meant that they did not focus their attention on their past but existed in the present and created goals for the future. This was a sign that they had indeed overcome their deficits and no longer regretted the shortfalls that came with their TBI. This was actually a positive aspect in how they would interact with close friends and loved ones and showed a progressive experience in their personal relationships.
There are several recommendations that could be made concerning the results that were found in the surveys. It would be suggested that not all TBI s are alike. They experienced different forms of rehabilitation, their families were unique and there were various forms of pre-existing situations before their injury that they dealt with. However, the results of the surveys suggested that all TBI s experience a multitude of similar issues that affected every one of their personal relationships and daily functioning. They could find ways to cope with their situation or continue to exist in their deficit, never reaching a point of self-actualization.
Recommendations for Future Research
Because TBI is also known as the “silent epidemic”, there still needs to be much research done about the aftereffects of personal relationships and returning back to life following a traumatic brain injury. One of the greatest limitations to this study was that there were not enough subjects involved in the surveys. In order to grasp the fullness of the relationship effects of TBI, there needed to be a larger group of respondents and caregivers surveyed for relationship effects following a TBI. Most of the surveys that were used for this study did not incorporate the effects of TBI but rather feelings that are experienced by people in stressful situations. There needed to be more surveys designed specifically for TBI s, their families and caregivers.
There were many relational concerns that arose from a TBI. After rehabilitation, there were many obstacles for the injured individual, their loved ones and caregivers. The results from a TBI could affect many parts of a survivor’s life that developed into various negative events. TBI interrupts personal development and objectives, disturbing workplace ambitions, close relationships and the sense of self (Rowlands, 2001). This study aimed to offer an understanding to those affected by and working with TBI survivor to acknowledge that the road to recovery does not end after a hospital stay.
To reveal evidence that personal relationships are affected by a TBI, eight surveys were conducted in this study. The first was the Satisfaction With Life Scale (SWLS), which was a measurement of life satisfaction or happiness. It included three factors: positive affective appraisal, negative affective appraisal and life satisfaction. Next was the Cognitive Emotion Regulation Questionnaire (CERQ), which was made to categorize cognitive emotion regulation techniques (or cognitive management approaches) people use after experiencing a negative circumstance or crisis. The CERQ looks specifically at the participant’s mental process after a traumatic event. The Scale of Positive and Negative Experience (SPANE) lists both positive and negative emotions like physical enjoyment, confidence, personal meaning, grief and apathy. The next scale is the Perceived Stress Scale (PSS) which is a discernment of the level to which circumstances in an individual’s experience are measured as stressful. The Flourishing Scale (FS) focused on different factors of social relationships like benefiting from devoted and helpful relationships, upholding other’s satisfaction and welcoming the recognition from others.
Next is the Awareness Questionnaire (AQ) which was a two part questionnaire. The self-form is to be filled out by a TBI survivor and the family-form is completed by a caregiver of a TBI survivor. The AQ was designed as an assessment tool for altered individual perception or impaired self-awareness and how a caregiver perceives their loved one following a TBI. The Zimbardo Time Perspective Inventory (ZTPI) measured four different time outlooks from the respondents and categorized their responses into future, past or present.
The results of the questionnaires revealed that depression and anxiety were in fact one of the major concerns following a TBI. A unique finding was that not all TBI survivors handled their depression and anxiety in the same manner. Some were still very much the same person while others still had much to overcome.
Because TBI is so common, one would imagine there would be sufficient research and study put into its aftereffects, but that is not so. There are several pioneering analysts who have conducted such unique studies but this particular area still has a long way to go. In order to obtain correct and accurate information to prove the effects that TBI has on personal relationships, there needs to be a large group of respondents who are asked specific, tailor made questions.
Once there is a better understanding and knowledge of the continuing repercussions following a TBI, this silent epidemic can be studied more closely. TBI survivors can be treated more accurately, they can enjoy their families more, overcome severe obstacles and deficits, return to work and make more contributions to society and TBI research. Compassion, empathy, understanding, patience, acknowledgement and specific objectives will make all this possible.
Allen, K., Linn, R. T., Gutierrez, H., & Wilier, B. S. (1994). Family burden following traumatic brain injury. Rehabilitation Psychology, 39(1), 29-48.
Bay, E., Hagerty, B. M., Williams, R. A., Kirsch, N., & Gillespie, B. (2002). Chronic stress, sense of belonging, and depression among s of traumatic brain injury. Journal of Nursing Scholarship, 34(3), 221-6. Retrieved from http://search.proquest.com/docview/236346827?accountid=41759
Boss, P. (1987). Family stress: Perception and context. In M. B. Sussman & S. K.
Steinmetz (Eds.), Handbook of marriage and the family (pp. 695-723). New York: Plenum.
Brain Injury Association of America (2004). TBI incidence: A comparison of traumatic brain injury and leading injuries or diseases. Retrieved on June 10, 2006 from http://www.biausa.org
Brooks, D. (1991). The head-injured family. Journal of Clinical and Experimental Neuropsychology, 13, 155-188.
Busch, C., & Alpern, H. (1998). Depression after mild traumatic brain injury: a review of current research. Neuropsychology Review, 8(2), 95-108.
Brooks, N., Campsie, L., Symington, C., Beattie, A., & McKinlay, W. (1987). The effects of severe head injury on patient and relative within seven years of injury. Journal of Head Trauma Rehabilitation, 2, 1-13.
Business Dictionary. (2013). qualitative data. WebFinance, Inc., Retrieved from http://www.businessdictionary.com/definition/qualitative-data.html
Carver, C., Scheier, M., & Weintraub, J. (1989). Assessing coping strategies: a theoretically based approach. Journal of Personality and Social Psychology, 56, 267-283.
Chan, M. (2009a). Satisfaction with life scale (swls) permission to use. Retrieved from http://internal.psychology.illinois.edu/~ediener/SWLS.html
Chan, M. (2009b). Scale of positive and negative experience (spane) permission to use. Retrieved from http://internal.psychology.illinois.edu/~ediener/SPANE.html
Chan, M. (2009c). Flourishing scale (fs) permission to use. Retrieved from http://internal.psychology.illinois.edu/~ediener/FS.html
Cherry, K. (2013). The id, ego and superego: The structural model of personality. Ask.com – Psychology, Retrieved from http://psychology.about.com/od/theoriesofpersonality/a/personalityelem.htm
Cohen, S. (1994). Perceived stress scale. Mind Garden, Inc.
COMBI (2013). Awareness questionnaire – family/significant other form. The Center for outcome measurement in brain injury, Retrieved from http://tbims.org/combi/aq/aqrat.html
Conser, E. (2008). Perceived stress scale conditions of scale use. Retrieved from http://www.macses.ucsf.edu/research/psychosocial/pss10.php
Degeneffe, C. E., & Lee, G. K. (2010). Quality of life after traumatic brain injury: Perspectives of adult siblings. Journal of Rehabilitation, 76(4), 27-36. Retrieved from http://search.proquest.com/docview/761335140?accountid=41759
Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The Satisfaction with Life Scale.Journal of Personality Assessment, 49, 71-75.
Diener, E., Wirtz, D., Tov, W., Kim-Prieto, C., Choi, D., Oishi, S., & Biswas-Diener, R. (2010). New well-being measures: Short scales to assess flourishing and positive and negative feelings. Social Indicator Research, 97, 143-156.
Douglas, J. M., & Spellacy, F. J. (1996). Indicators of long-term family functioning following severe traumatic brain injury in adults. Brain Injury, 10(1), 819-840.
The Free Dictionary. (2013). Dictionary. Farlex, Retrieved from http://medical dictionary.thefreedictionary.com
Garnefski, N., Kraaij, V., & Spinhoven, P. (2002). Manual for the use of the cognitive emotion regulation questionnaire. Datec, 32-33.
Garnefski, N., & Kraaij, V. (2007). The cognitive emotion regulation questionnaire: Psychometric features and prospective relationships with depression and anxiety in adults. European Journal of Psychological Assessment, 23(3), 141-149. doi: 10.1027/1015-57184.108.40.206
Garnefski, N., & Kraaij, V. (2009). Cerq for research purposes. Retrieved from http://www.socialsciences.leiden.edu/psychology/organisation/chn/health/research/instruments/cognitive-emotion-regulation-questionnaire-cerq.html
Gervasio, A. H., & Kreutzer, J. S. (1997). Kinship and family members’ psychological distress after traumatic brain injury: A large sample study. Journal of Head Trauma Rehabilitation, 72(3), 14-26.
Hall, K. M., Karzmark, P., Stevens, M., Englander, J., O’Hare, P., & Wright, J. (1994). Family stressors in traumatic brain injury: A two-year follow-up. Archives of Physical Medicine and Rehabilitation, 75, 876-884.
Henry, P. W, Knippa, J., & Golden, C. J. (1985). A systems model for therapy with brain-injured adults and their families. Family Systems Medicine, 3, 427-439.
Hibbard, M., Uysal, S., Kepler, K., Bogdany, J., & Silver, J. (1998). Axis 1 Psychopathology in individuals with traumatic brain injury. Journal of Head Injury Rehabilitation, 13(4), 24-39.
Johnson, B. & Christensen, L. (2003). Educational research : Quantitative, qualitative, and mixed approaches. (2nd ed.). Thousand Oaks, CA: Sage Publications.
Karpman, T., Wolfe, S., & Vargo, J. W. (1985). The psychological adjustment of adult clients and their parents following closed-head injury. Journal of Applied Rehabilitation Counseling, 77(1), 28-33.
Kosciulek, J. F. (1994). Relationship of family coping with head injury to family adaptation. Rehabilitation Psychology, 39(4), 215-230.
Kreutzer, J. S., Gervasio, A. H., & Camplair, P. S. (1994b). Primary caregivers’ psychological status and family functioning after traumatic brain injury. Brain Injury, 8(3), 197-210.
Leathern, J., Heath, E., & Woolley, C. (1996). Relatives’ perceptions of role change, social support and stress after traumatic brain injury. Brain Injury, 70(1), 27-38.
Lerner, M. J., & Simmons, C. (1966). Observers’ reaction to the innocent survivor: Compassion or rejection? Journal of Personality and Social Psychology, 4, 203-210.
Lezak, M. D. (1978). Living with the characterologically altered brain injured patient. Journal of Clinical Psychiatry, 39, 592-598.
Livingston, M. G., Brooks, D. N., & Bond, M. R. (1985b). Three months after severe head injury: Psychiatric and social impact on relatives. Journal of Neurology, Neurosurgery and Psychiatry, 48, 870-875.
Ludwig, H. (2003). Traumatic brain injury: Medical considerations & educational implications. The Exceptional Parent, 33, 40-42. Retrieved from http://search.proquest.com/docview/223527966?accountid=41759
Maitz, E. (1990). The psychosocial sequelae of a severe closed head injury and their impact upon family systems. Unpublished doctoral dissertation, Temple University, Philadelphia.
Maitz, E. A. (1991). Family systems theory applied to head injury. In J. M. Mauss-Clum, N., & Ryan, M. (1981). Brain injury and the family. Journal of Neurosurgical Nursing, 13, 165-169.
Mintz, M. C, Van Horn, K. R., & Levine, L. J. (1995). Developmental models of social cognition in assessing the role of family stress in relatives’ predictions following traumatic brain injury. Brain Injury, 9(2), 173-186.
Moore, A., Stambrook, M., & Peters, L. (1993). Centripetal and centrifugal family life cycle factors in long-term outcome following traumatic brain injury. Brain Injury, 7(3), 247-255.
Mukherjee, D., Reis, J. P., & Heller, W. (2003). Women living with traumatic brain injury: Social isolation, emotional functioning and implications for psychotherapy. Women & Therapy, 26(1), 3-3. Retrieved from ttp://search.proquest.com/docview/216240141?accountid=41759
National Institutes of Health. (1998). Rehabilitation of persons with traumatic brain injury. Paper presented at the NIH consensus statement, Washington, D.C.
Novack, T. A., Berquist, T. F, Bennett, G., & Gouvier, W. D. (1991). Primary caregiver distress following severe injury. Journal of Head Trauma Rehabilitation, 6(4), 69-77.
Oddy, M., Humphrey, M., & Uttley, D. (1978a). Stresses upon the relatives of head-injured patients. British Journal of Psychiatry, 133, 507-513.
Panting, A., & Merry, P. H. (1972). The long-term rehabilitation of severe head injuries with particular reference to the need for social and medical support for the patient’s family. Rehabilitation, 38, 33-37.
Perlesz, A., Kinsella, G., & Crowe, S. (1999). Impact of traumatic brain injury on the family: A critical review.Rehabilitation Psychology, 44(1), 6-35.
Pessar, L. F, Coad, M. L., Linn, R. T, & Wilier, B. S. (1993). The effects of parental traumatic brain injury on the behaviour of parents and children. Brain Injury, 7(3), 231-240.
Psychology Today. (2013). Coping with trauma. Sussex Publishers, Retrieved from http://www.psychologytoday.com/basics/trauma
Romano, M. D. (1974). Family response to traumatic head injury. Scandinavian Journal of Rehabilitation Medicine, 6, 1.
Rosenbaum, M., & Najenson, T. (1976). Changes in life patterns and symptoms of low mood as reported by wives of severely brain-injured soldiers. Journal of Consulting and Clinical Psychology, 44(6), 881-888.
Rowlands, A. (2001). Ability or disability? strengths-based practice in the area of traumatic brain injury. Families in Society,82(3), 273-286. Retrieved from http://search.proquest.com/docview/230171230?accountid=41759
School Transportation News (2009). Disability definitions.ST News, Retrieved from http://www.stnonline.com/resources/special-needs/definitions
Sherer, M., Bergloff, P., Levin, E., High, W., Oden, K., & Nick, T. (1998). impaired awareness and employment outcome after traumatic brain injury.journal of head trauma rehabilitation, 13(5), 52-61.
Sherer, M. (2013, 08 28). Re: Permission to use awareness questionnaire [Electronic mailing list message].
Snaith, R. P., Bridge, G. W. K., & Hamilton, M. (1976). The Leeds Scale for the self-assessment of anxiety and depression. British Journal of Psychiatry, 128, 156-165.
Spanbock, P. (1992). Children and siblings of head injury s: A need to be understood. The Journal of Cognitive Rehabilitation, 10(4), 8-9.
Spirito, A., Stark, L., & Williams, C. (1988). Development of a brief coping checklist for use with pediatric populations. Journal of Pediatric Psychology, 13, 555-574.
Thomsen, V. (1974). The patient with severe head injury and his family. Scandinavian Journal of Rehabilitation Medicine, 6, 180-183.
Thomsen, V. (1984). Late outcome of very severe blunt head trauma: A 10-15 34 Perlesz, Kinsera, and Crowe year second follow-up. Journal of Neurology, Neurosurgery and Psychiatry,47, 260-268.
U.S. General Accounting Office (1998). Traumatic brain injury: Programs supporting long-term services in selected states. Washington. D.C.
Walker, A. E. (1972). Long-term evaluation of the social and family adjustment to head injuries. Scandinavian Journal of Rehabilitation Medicine, 4, 5-8.
Wartburg University (2013). Example of an informed consent form for an online survey. Wartburg Human and Animal Research, Retrieved from http://www.wartburg.edu/harrc/InformedConsentexample.pdf
Webb, D. (2013). The zimbardo time perspective inventory (ztpi). Retrieved from http://www.all-about-psychology.com/questionnaire.html
Weissman, M. A. (1983). The depressed mother and her rebellious adolescent. In H. L. Morrison (Ed.), Children of depressed parents. New York: Grune & Stratton.
Wilier, B. S., Allen, K. M., Liss, M., & Zicht, M. S. (1991). Problems and coping strategies of individuals with traumatic brain injury and their spouses. Archives of Physical Medicine and Rehabilitation, 72, 460-464.
Yin, R. K. (1984). Case study research: Design and methods. Newbury Park, CA: Sage.
Zimbardo, P., & Boyd, J. (2008). An overview of time perspective types. The Time Paradox, Retrieved from http://www.thetimeparadox.com/2008/08/03/an-overview-of-time-perspective-types/
Informed Consent Form From Participants
Purpose of the Study:
This is a case study about the effects in personal relationships that are experienced by traumatic brain injury (TBIs) and their family, loved ones and care givers. It was conducted by David T. White, an online master’s degree student in healthcare administration at Stevens-Henager College in Salt Lake City, Utah.
What will be done:
Two groups of participants are included in this case study. The first group is made of TBI survivors and the second are caregivers of TBI survivors. The TBI group will complete seven on-line surveys, which will take a total of about thirty-five minutes to complete. The surveys incorporate questions regarding how your experience after you have survived a TBI. The second group of participants are caregivers of TBI survivors who will complete only one survey that asks questions on how they viewed their loved one with a TBI after their injury. Additional queries will ask about the following feelings and experiences TBI survivors and their caregivers might have gone through: stress, anxiety, lack of self awareness, frustration, loneliness, ups and downs, depression, changes in relationships, self actualization and several others.
After the surveys are concluded, they will be inspected, recorded and processed. Because this case study is both quantitative and qualitative, the answers will have numerical values in chart form and will be fully explained in detail. Your permission is also needed to include your quotations from open-ended answers.
Benefits of this Study:
Because of your participation in this study, you will bring a better understanding of how TBIs affect personal relationships. Because this study is only limited to three TBI survivors and two caregivers, it can act as a baseline for further research on a larger scale.
Risks or discomforts:
No risks or discomforts are foreseen as a part of participating in this case study. If at any time, you experience awkwardness during a question, you may skip that question or completely disengage yourself from the survey. If you prefer to withdraw yourself any time before the conclusion of a survey, the answers will not be recorded.
Your feedback will remain completely confidential. Your IP address (which can identify who you are) will be totally unknown as you reply to the surveys. As an identifier, you will be given a participant number. This particular number will be seen with your survey responses. After the information is gathered, each participant will be sent a copy of the results.
Decision to quit at any time:
Your contribution to this case study is strictly autonomous and you have the freedom to withdraw your participation at any time. If you do not wish to continue, you may simply exit the survey website. The answers will not be recorded until the “submit” button is selected.
How the findings will be used:
The outcome of this case study will be used for educational reasons only and not for diagnosis purposes. It is possible that the results from this study can be utilized and built on by others for additional research.
If you have concerns or questions about this study, please contact David White at
No signature is required for informed consent. By starting the surveys, you agree that you have read this information and accept to participate in this case study, with the understanding that you have the freedom to withdraw your contribution at any time (Wartburg University, 2013).
Permission From Authors to use Surveys
Satisfaction With Life Scale (SWLS)
“The scale is in the public domain (not copyrighted) and therefore you are free to use it without permission or charge by all professionals (researchers and practitioners) as long as you give credit to the authors of the scale: Ed Diener, Robert A. Emmons, Randy J. Larsen and Sharon Griffin as noted in the 1985 article in the Journal of Personality Assessment (Chan, 2009).”
Cognitive Emotion Regulation Questionnaire (CERQ)
“You are welcome to use the CERQ for free for research purposes. In case you decide to use our questionnaire, we do however ask you to fill out and send back to us a form concerning a request for the use of the CERQ. This request form can be downloaded from the present site. By signing and sending back this form, the university/research institute to which you belong obtains permission of the authors to make reprints of the CERQ for use in the present research project. Therefore, a kind request to send back to us this request form, in case you are going to use the CERQ (Garnefski & Kraaij, 2009).”
Scale of Positive and Negative Experience (SPANE)
“The scale is copyrighted but you are free to use it without permission or charge by all professionals (researchers and practitioners) as long as you give credit to the authors of the scale: Diener, E., Wirtz, D., Tov, W., Kim-Prieto, C., Choi. D., Oishi, S., & Biswas-Diener, R. (2009). New measures of well-being: Flourishing and positive and negative feelings. Social Indicators Research, 39, 247-266 (Chan, 2009b).”
Perceived Stress Scale (PSS)
“Conditions of Scale Use – Permission for use of the scale is not necessary when use is for academic research or educational purposes (Cosner, 2008).”
The Flourishing Scale (FS)
“The scale is copyrighted but you are free to use it without permission or charge by all professionals (researchers and practitioners) as long as you give credit to the authors of the scale: Diener, E., Wirtz, D., Tov, W., Kim-Prieto, C., Choi. D., Oishi, S., & Biswas-Diener, R. (2009). New measures of well-being: Flourishing and positive and negative feelings. Social Indicators Research, 39, 247-266 (Chan, 2009c).”
Awareness Questionnaire (Self and Family Forms)
From an e-mail written by the author Mark Sherer, “I am writing to give you permission to use the Awareness Questionnaire for your project. You can find the forms at http://www.tbims.org/combi/aq/index.html.
Mark Sherer, Ph.D., ABPP, FACRM
Senior Scientist and Director of Research
TIRR Memorial Hermann
Clinical Professor of Physical Medicine and Rehabilitation
University of Texas Medical School at Houston
Baylor College of Medicine
Mark.Sherer@memorialhermann.org (Sherer, 2013)”
The Zimbardo Time Perspective Inventory (ZTPI)
“The ZTPI is a public domain research instrument and may be used free of charge for non commercial applications (Webb, 2013).”