Tactile Perceptual Elements of Halstead-Reitan Sensory. Perceptual Exam. Academic Achievement - Various standardised instruments including diagnostic ...
AN EXPLORATIVE CASE STUDY ON THE EXPERIENCE OF A FAMILY WHOSE CHILD HAS SURVIVED A TRAUMATIC BRAIN INJURY
By
WINNIE CHAKI MAYINDI
Mini- Dissertation Submitted in partial fulfillment of the requirements For the degree
MAGISTER EDUCATIONIS
In EDUCATIONAL PSYCHOLOGY In the FACULTY OF EDUCATION At the UNIVERSITY OF JOHANNESBURG
Supervisor: Mrs JV Fourie Co-Supervisor: Mrs H Dunbar-Krige
June 2006
DEDICATION
1
I dedicate this study to my Creator, God the Almighty. The Provider of strength, health and wealth of opportunities that led to the conception and completion of this study. To all families whose children have suffered Traumatic Brain injury. To all educators of special and specialized schools who teach children who has experienced TBI.
I dedicate this study to my late parents Grace and Elmond. To my late sister Nobantu and her son Thami, who both died of a motor vehicle accident. To my sister Fanisa, my source of strength and support, who literally plays a babysitting role on behalf of my late parents.
To Tennyson my loving husband for his encouragement and support. To the gift of my life, Sibongile my only daughter, my three sons, Bongani, Wandile and my last born child Lungile who survived Traumatic Brain injury.
2
ACKNOWLEDGEMENTS
I would like to express my sincere gratitude to the following people for their invaluable support; without which the achievement of this phenomenal career milestone would not have been possible:
Mrs Jean Fourie, for her supervision and guidance, in this study.
Ms Helen Dunbar-Krige, for her phenomenal support, compassion, contagious positive energy, never-ending encouragement, and her belief in me even when I have lost myself, she held me by the hand until I found myself again.
Professor Anita Stuart, for guidance and assistance, to conceptualize this research topic.
Ms Eleanor Bubb, the specialist in forensic work for her support and mentorship in this complex field of Traumatic Brain Injury.
Dr Andrew Graham, the academic writing specialist for his guidance and support that made it possible for me to complete this study.
Ms Cilla Nel the academic writing specialist for making this mammoth task enjoyable, manageable, achievable.
Mrs Ansie Brink, for her emotional and technical support.
To all my friends, Mubi, Tumi, Chabi, Soraya, Deli, their support in this regard is highly appreciated. I cherish the sisterhood.
To Kutloano and Badanile, for their unconditional support during trying times.
3
ABSTRACT
This study focuses on the role of the medico-legal team, and the educational psychologist in particular, towards the family whose child has survived Traumatic Brain Injury through an involvement in a motor vehicle accident. In South Africa there is a high incidence of motor vehicle accidents. This incidence, adversely affects families, emotionally, socially and economically. Research has shown that the incidence of Traumatic Brain injury (TBI) is higher in South Africa than the worldwide average as compared to other developing countries. This prevalence is confirmed by the Road Accident Fund, a government entity that is responsible for compensating victims of negligent road users that approximately 10 000 people die and 150 000 sustain injuries in South African roads every year.
The study was conducted as an attempt to answer the research question: What is the experience of a family whose child has sustained a Traumatic Brain Injury? The envisaged outcomes of the research would then assist the researcher to offer recommendations for educational psychologists working with children who had survived TBI and their families, aimed addressing the needs of such families. The research paradigm emanates from a systemic view. It is a qualitative case study, drawn from a particular selected family, as a unit of study.
Data was
collected through unstructured interviews, and interviews were audio-taped and transcribed.
Other sources of data were collected from hospital records,
psychological records and letters from the school to be used as supporting evidence.
The findings of the study suggest that families are subject to shock of the trauma, that they experience loss, they grieve for a lost one and have to cope with daily frustration, when their child survives a Traumatic Brain Injury. Recommendations have been drawn to provide a sound framework for educational psychologists who work with families whose children has experienced TBI.
4
TABLE OF CONTENTS DEDICATION ACKNOWLEDGEMENTS ABSTRACT CHAPTER ONE : OVERVIEW OF THE STUDY 1.1 1.2 1.3 1.4 1.5 1.5.1 1.6 1.7 1.7.1 1.7.2 1.7.3 1.8 1.9 1.10 1.11
INTRODUCTION RATIONALE AND SIGNIFICANCE OF THE STUDY RESEARCH QUESTION AIMS OF THE RESEARCH CONCEPTUAL FRAMEWORK Definition of key concepts RESEARCH APPROACH RESEARCH METHODOLOGY Data collection methods Data management process Data analysis TRUSTWORTHINESS OF THE RESEARCH ETHICAL CONSIDERATIONS THE RESEARCH CONTRIBUTION SUMMARY
i ii iii 1 1 1 4 5 5 6 9 10 10 12 13 13 13 14 15
CHAPTER TWO : REVIEW OF THE LITERATURE
17
2.1 2.2 2.3
17 18 19 20 22 23 24 24 26 26 27 28 29 31 32 34 37 37 38 40 42
2.3.1 2.3.2 2.4 2.4.1 2.4.2 2.4.3 2.4.4 2.4.5 2.5 2.5.1 2.5.2 2.6 2.6.1 2.7 2.7.1 2.7.2 2.7.3 2.7.4
INTRODUCTION SYSTEMS THEORY COMPOSITION OF THE HUMAN BRAIN The function of the brain and the central nervous system Other forms of brain injury TRAUMATIC BRAIN INJURY (TBI) The severity of injury Mild Traumatic Brain Injury (mTBI) Moderate Traumatic Brain Injury (moTBI) Severe Traumatic Brain Injury (sTBI) Recovery after TBI TBI REHABILITATION The strength-based approach vs the medical model TBI prevention THE EFFECTS OF TBI TBI and its impact on learning in children THE FAMILY Defining the family Effects of TBI on the family Family organisational forms TBI and the family cycle
5
2.7.5 TBI and family functioning 2.8 TBI COMPENSATION FOR PAIN, LOSS AND SUFFERING 2.8.1 The litigation process 2.8.2 Valuation of a claim 2.9 THE ROLE OF THE EDUCATIONAL PSYCHOLOGIST IN FORENSIC WORK 2.9.1 The role of the educational psychologist in TBI intervention 2.9.2 The process of neuropsychological assessment 2.9.3 Constructing neuropsychological assessments 2.9.4 The composition of a comprehensive children’s neurological battery 2.9.5 A constructivist’s approach to conducting neuropsychological assessment 2.9.6 Writing a neuropsychological report 2.10 SUMMARY
43 44
CHAPTER THREE : RESEARCH DESIGN
57
3.1 3.2
57 57 59 60 62 62 62 63 66 66 68 70 70 71 71 72 72
3.2.1 3.3.2 3.3.3 3.4 3.4.1 3.4.2 3.4.3 3.5 3.6 3.7 3.7.1 3.7.2 3.7.3 3.7.4 3.8
INTRODUCTION QUALITATIVE RESEARCH APPROACH Case study design Research participants The research methodology DATA COLLECTION Gaining entry to the research process Interviews Observation DATA ANAYLSIS PROCEDURE ETHICAL CONSIDERATIONS TRUSTWORTHINESS OF THE STUDY Truth value (credibility) Applicability (Transferability) Consistency (dependability) Triangulation SUMMARY
45 45 46 48 49 50 51 53 54 55
CHAPTER FOUR : DATA ANALYSIS, DISCUSSION AND INTERPRETATION OF THE FINDINGS
74
4.1 4.2 4.3 4.4
74 75 78 78
4.4.1 4.4.2 4.4.3 4.4.4
INTRODUCTION BONGA’S CASE BACKGROUND DATA ANALYSIS THEMES WHICH EMERGED FROM THE INTERVIEW WITH THANDI Shock of the trauma Experience of loss Grieving for lost one Coping with daily frustration
81 83 86 90
6
4.5
4.6
IDENTIFICATION OF THEMES FROM EDUCATOR INTERVIEWS 4.5.1 Identification of effects of injury 4.5.2 Pre- and post-scholastic functioning SUMMARY
CHAPTER FIVE : SUMMARY AND RECOMMENDATIONS 5.1 5.2 5.3
INTRODUCTION SUMMARY OF THE FINDINGS RECOMMENDATIONS FOR EDUCATIONAL PSYCHOLOGISTS IMPLICATIONS FOR FURTHER RESEARCH LIMITATIONS OF THE STUDY CONCLUSION
5.4 5.5 5.6
BIBLIOGRAPHY
92 93 95 98 99 99 100 102 107 109 109 113
LIST OF APPENDICES A B C D E F G H I J K L M N O
Letter to the Gauteng Department of Education Letter to the principal and staff requesting permission to interview educators Letter to mother requesting consent to use hospital and psychological reports Letter to mother requesting permission to conduct educational research Letter to child requesting consent for interview Letter to school of learners with special needs requesting access to hospital records Transcript of interview with mother Transcripts of interviews with educators Letter to specialised school from the attorney Copy of Claim for compensation and medical report form Medico-legal report from neurosurgeon Medico-legal report from industrial psychologist Medico-legal report from educational psychologist Letter from school dated 21/05/02 Letter from school dated 18/10/02
LIST OF FIGURES 1.1 Data collection methods employed in this study 2.1 Structure of the human brain
12 21
LIST OF TABLES 2.1 The functions of the cerebral lobes 2.2 The three categories of the severity of TBI 2.3 A comprehensive neuropsychological battery for children 3.1 Model of trustworthiness
20 24 52 70
7
4.1(a) 4.1(b) 4.2 4.3
Key categories and themes which emerged from the interview with Thandi Key identified themes (and codes) Key categories and themes which emerged form the interviews with the educators Identification of effects of injury
79 81 92 94
CHAPTER ONE OVERVIEW OF THE STUDY
1.1
INTRODUCTION
A family is generally perceived by its members as a system from which they can draw strength, whenever they feel challenged by demands from their environment and from outside home. As a result, they experience frustration and difficulty when some of their basic needs are not being met. Yet, their expectations of the provision of support, affection and safety by the parents and families, is the responsibility for which parents and families are poorly prepared. As a result, the inability to fulfil these needs creates a feeling of inadequacy among parents and families, Herbert and Haper-Dorton (2002:18). The family’s inability to meet the needs of all its members becomes more challenging when their child has suffered Traumatic Brain Injury (TBI). In South Africa TBI is a major cause of death to the victim and acquired disability in the survivor, often from motor vehicle accidents, with approximately 10,000 people and 150,000 sustaining injury on the roads each year, including many pedestrians (www.raf.co.za). Other researchers, such as Mokhosi and Grieve (2004:302), confirm that TBI incidence in South Africa is higher than the worldwide average, with many families being adversely affected, socially, emotionally and economically.
8
1.2
RATIONALE AND SIGNIFICANCE OF THE STUDY
The development of this study emanates from a quest to establish some understanding of the expected roles and responsibilities of an educational psychologist in understanding the experiences of a family whose child has survived TBI. The major focus is aimed at providing an understanding of what the family endures when their child has suffered TBI. An attempt to provide a description of the participants’ experiences may lead us to an understanding of family experience when their child has survived TBI. Family experience has been examined within the phenomenon of the medico-legal process where the interactions of the medical professionals and the medico-legal-team working with the TBI child will be examined. I believe that if an understanding is reached, the research outcome may contribute to improving policy and practice of educational psychologists working with TBI children and their families. Dawson and Chipman (in Rowlands, 2001:276) suggest that “there needs to be a shift away from considering a person with injury as the only place where health professionals intervene”. They argue that intervention has to be extended to the injured person’s resources, network and community. Therefore the key focus of this study is to understand the family experiences in relation to wider systems, when their child has survived TBI. The way in which the team of specialists take into consideration the needs of the family, while striving to support the child, is particularly significant. As a researcher, I identify with such families because of the experience I had with my last-born child who survived TBI when he was in Grade One, eight years prior to the study. This has been one pain that I am still battling to come to terms with as a mother and caregiver. I believe that conducting research within this context will broaden my knowledge base and form a springboard for my journey as an aspiring TBI specialist in educational psychology.
9
Working as a professional psychometrist has been an added advantage that led to my developing the study in question. I was fortunate to be offered employment by an educational psychologist, who formed part of a multidisciplinary team of specialists who work with children who have survived TBI. I also worked as a psychometrist for a neuropsychologist who worked with TBI cases, including children and adults, for a period of about three months. It is against this background that my quest to conduct this study was realised.
In my observation, the majority of the client base that we served consisted of Black families with low socio-economic status. Gladding (1998:23) mentions that such families are “generally larger, more dependent on kin, and [are] maternal”. In most cases, fathers are forced to work far away from home in an attempt to fend for their families, resulting in a disrupted family system. From my observations, I realised that a greater percentage of the families that I worked with were semiliterate and some were barely literate, with little knowledge of any language other than their ethnic one. This observation concurs with Nells’ findings (in Mokhosi & Grieve, 2004:303) on South African literacy levels, in which he reports that approximately 70% of Blacks are functionally illiterate, that is unable to read basic texts such as forms and letters (National Centre for Educational Studies {0NCES}, n.d.:online). This implies that the reading and writing level of the abovementioned percentage of the country’s communities is well below average. As a result, I had to do much translation work during the time I was working as a psychometrist, especially during family interview sessions.
My second observation was that the focus of medical-legal work regarding the TBI survivor seemed to weigh heavily on the litigation process for compensation. Very little attention was given to family pain, which often became evident during the family interview sessions. These observations placed me in a position of some concern, as I wondered how the family would support the survivor with such continuing pain. Unfortunately, in retrospect, these observations triggered my past recollections of TBI and the process I had been through. Thus, a pursuit to understand family experience of TBI was prompted. Related to this concern, Otto and Power (1994:03) suggest that:
10
Rehabilitation systems are not primarily designed to meet the changing needs of families. This deficit often adds to the stress, strain and distress experienced by the family forced to let go of their loved one and renegotiate a relationship with an individual who is not the person they knew, loved and cared for prior to injury.
Rehabilitation, according to Rich (2005:35), is the restoration of the disabled person to some degree of normal life through provision of appropriate intervention and training programmes. It against this background that I argue that It appears as though the needs of the family (care-giver) are not taken into consideration during the medico-legal process, an intervention process that facilitates and coordinates the compensation of claims from the Road Accident Fund (RAF) for the TBI survivor. The main client seems to be the TBI child, with trauma-debriefing or counselling intervention not included in the process. The emotional needs of the family, after the trauma of head injury, appear not to be addressed.
This existing gap refutes the notion of recent legislation and policy of inclusion in South Africa that recognises the role and responsibility of parents, and emphasizes their participation in issues that relate to their children (Swart, Engelbrecht, Eloff, Petipher & Oswald, 2004:80). The views of Swart et al. affirm the significance of using an inclusive approach to systems and processes of intervention in working with children. Thus, the purpose of this study is to examine and understand how the pain and suffering of a family is taken into consideration when their child has sustained TBI. Motivation for this investigation is focused on the family as a system and unit for analysis. The key areas that require examination are effects of TBI on the family and survivor.
1.3
RESEARCH QUESTION
11
When a child suffers TBI, in many instances the emotional, behavioural and cognitive competencies become compromised. As a result, the family is left to cope with what may be regarded as a largely new individual. Unfortunately, families are left with little knowledge of the care and support required to fulfil the rehabilitation needs of the child, making it difficult for them to execute their obligations appropriately (Tyerman & Booth, 2001:59). Thus, the focus of this research is on family experience, as an attempt to reach some understanding that would clarify how educational psychologists working with TBI children can improve their practice to meet the needs of the family. The research question is:
How can educational psychologists understand the experiences of a family whose child has suffered TBI?
An attempt to answer this question will enable me to provide a rich description of a family’s experience of TBI.
1.4
AIMS OF THE RESEARCH
The main aim of this study is to establish ways in which educational psychologists can understand the experiences of the family of a child who has suffered TBI. Other aims are to:
Describe the effects TBI has on the family of a survivor.
Establish whether the needs of the family are taken into consideration in any medico-legal process.
Draw up recommendations for educational psychologists who work with children who have survived TBI.
Add to the body of knowledge, policy and practice of educational psychologists who work with families of children who survived TBI, in an attempt to bridge the existing gap in knowledge.
12
1.5
CONCEPTUAL FRAMEWORK
The conceptual framework for this study has been developed around an assumption comprising a systems perspective, emanating from Donald, Lazarus and Lolwana (2002:47-50); Nichols and Everett (in Gladding, 1998:74); Janzin and Harris (in Herbert & Harper-Dorton 2002:19) and Huitt (2003 online). They view families as interacting as a system, and hold that as families adjust, change and define their boundaries; they do not undergo this process in isolation. In making their adjustments and accommodations, they affect their subsystems internally and externally. These authors view different levels of groupings of social contexts, as functioning as a whole and whose functioning is dependent on the interaction all the other parts. The framework is also informed by the thinking of Donald et al. (2002:99-101) and Schwandt (in Denzin & Lincoln, 1994:125), which lays emphasis on the world of experience as it is lived and felt. They hold that reality can be understood by breaking experiences up into small parts, and if these small parts are understood then the reality of experiences can be understood. These assumptions provide a basis of approach towards an attempt to answer the research question, namely to make sense of the experience a family whose child has survived TBI. It is my belief that if I look at the family as a system and identify the assets that the family can bring to the process of intervention, all involved can benefit in the long run, including practitioner, the survivor and the family. Creswell (1998:78) resonates with this view and holds that the researcher’s theoretical assumptions play a significant role in the development and direction of the inquiry, and that it cannot be separated from the researcher’s values and view of reality.
Arguably, the interactions of individuals may not be reduced to a sum of actions of individual parts, but have to be viewed as an observable pattern that has to connect those parts in a “coherent and meaningful way” (Dallos & Draper, 2000:24) for family, development, growth, healing and adjustment. It is upon these assumptions that the study has been conceptualised.
1.5.1 Definition of key concepts
13
In an attempt to establish clarification regarding families who have experienced TBI, key concepts will be defined to broaden the conceptual framework of educational psychologists in an attempt to add to the already existing understanding of TBI and the family.
i. The Family Definition of the term ‘family’ has evolved over many years in the field of family therapy, and as a consequence a single definition will not be appropriate. Clarification of the concept will rather focus on two components, the family’s structure and its function. Structurally, a family is viewed as a group of two or more people who are related by birth, legally and living together, sharing one shelter and food (Mwamwenda, 1994:370; Gladding, 1998:6). On the other hand, several researchers, namely Satir (1972:12), Mckenry and Price (1994:130), Gladding (1998:50) Dallos and Draper (2000:8), O’Shea and O’Shea (2001:35), regard the family functionally, as an important source of support, where its members find love, understanding and caring. They argue that whether the family is perceived as functional or dysfunctional, it does have strengths that it can draw upon to function as a balanced system. The abovementioned features enable the family to evolve, change and grow as it proceeds through its developmental life cycle, regardless of whether or not their child has experienced head injury.
ii. Head Injury Pain, suffering and loss that are experienced through ‘head injury’ varies from person to person. Olson (2004:10) defines it as any alteration in mental or physical well being, caused by a blow to the head, which may often result in injury or trauma to the brain, hence the concept Traumatic Brain Injury (TBI). Head injury is classified by the Family Caregiver Alliance (www.caregiver.org 2003/02/05) in two ways:
14
(i) An open head injury is an injury that is experienced when the skull is penetrated, pierced or lacerated by a bullet or any sharp object resulting in torn, pierced, or ruptured tissues.
(ii) A closed head injury is an injury to the brain that is caused by some kind of an impact or blow which causes the brain to smash into the hard bony surface inside the skull. Closed head injury may also occur without direct external trauma to the head but when the head undergoes a rapid forward or backward movement from an abrupt deceleration of a motor vehicle. An injury to the head can either be mild moderate or severe. It is unfortunate that in many instances, closed head injury goes unnoticed because of lack of visible injuries from the surface of the skull, resulting in misperception and underestimation of the extent of the injury.
iii. Post-traumatic amnesia
Post-traumatic Amnesia (PTA) is described by Rich (2005:2) and Ahmed, Bierley, sheikh and Date (2000:765), as a period after injury during which the TBI survivor is confused, disoriented and subject to memory loss.
iv. Forensic work
Forensic work is broadly defined by Wrightsman (2001:23) as any application of psychological knowledge or methods carried out by a legal team. Psychologists who do forensic work provide expert testimony, based on their speciality, either in a clinical, industrial or educational category. In this case, the educational psychologist conducts a neuropsychological assessment to determine the extent of the injury and its effects on the TBI survivors. The major focus of the assessment is to determine the impact of injury and, in the case of a child, evaluate post-accident scholastic functioning and disability. He or she then writes a medico-legal report for the medico-legal team to help build a case for compensation from the RAF in a court of law. This process of litigation is coordinated by the attorney, who acts as a legal representative for the family of
15
the TBI survivor. The attorney facilitates the process in consultation with other specialists, such as doctors, neurosurgeons, audiologists, ophthalmologists and other therapists, whose expert opinions fit the category of the case at hand.
v. Road Accident Fund (RAF)
The Road Accident Fund (RAF) is a South African government entity that pays compensation to survivors of road accidents or dependents of people who have lost their lives from negligent driving of a motor vehicle through an accident (www.raf.co.za). A firm of attorneys which specialises in medico-legal claims is appointed by the family to file a claim from the fund. In order for the firm to build a case, they employ other specialists as service providers, to constitute a medicolegal team, often including an educational psychologist, who then conducts neuropsychological assessments to determine the effect of the accident on the daily functioning of the TBI survivor.
1.6 RESEARCH APPROACH
In this study, the qualitative research approach situated within an interpretivist paradigm with constructivist belief systems (Bettis & Gregson, 2001:10) has been chosen as appropriate and relevant as qualitative research is a “quest” for understanding (Henning, van Rensburg & Smit, 2004:3), and a methodical study of socially organised settings. Fick (in Nassar, 2001:91) describes qualitative research as a “process of inquiry based on a particular context, which focuses on a specific unit of analysis, using a variety of methods”. Merriam and Associates (2002:25) explain that the purpose of qualitative research is to describe a phenomenon which often tends to rely on single settings with relatively small samples, from which in-depth information is collected. This collection of detailed data results in a richly descriptive report of words about human experiences (Merriam, 1998:6; Merriam et al., 2002:5), and consequently assisted the researcher in obtaining a thick description of the participating family’s recollections
16
of the motor vehicle accident experience of their child, that led to traumatic brain injury, from within their own natural setting.
This qualitative research study took the form of a case study of a chosen object as it is used to gain in-depth understanding of a particular situation and meaning for those involved, interest being in the “process rather than the outcome, in discovery rather than confirmation” (Merriam, 1998:19). It provides a “description of how, where, when and why things happen (Henning et al., 2004:41). Thus, a case study is an investigation of a “contemporary phenomenon within its real-life context” (Yin, 1984:23), which may be a set of people “bounded by parameters and that shows a specific dynamic and relevance, revealing information that can be captured within these boundaries” (Henning et al., 2004:32). Henning et al. (2004:40) suggest that a researcher using specific questions, should set those boundaries which would define ‘a case’ by identifying the people, the unit of analysis, the phenomenon to be studied, the time involved, the activities and events to be included and the research methods to be used. Stake (in Denzin & Lincoln, 1994:236) explains that when conducting a case study, it should be specific, and its parts have to work as part of an integrated system to represent the case and not the world. In this instance, the approach to my “particularistic case study” (Merriam,1998:29) is qualitative, emanating from a systemic standpoint, where the participants are viewed as active agents who influence each other within their environment, in relation to their own development. Thus, the unit of analysis will be the experience of TBI by the family, coupled with supporting evidence.
1.7 RESEARCH METHODOLOGY
The methodology employed to address the research question emanate from a qualitative approach, because they are aimed at a deep understanding of how the participants experience TBI. Hence, this qualitative study, situated in an interpretivist paradigm, focuses on the interpretation of the findings emerging from the data gathered by the researcher as the primary instrument, assisted by the
17
theoretical framework to profoundly explain, predict, interpret and modify the data to address the core of the study, (Glaser in Denzin & Lincoln, 1994:432). The interpretations of the findings have been outlined in Chapters 4 to provide recommendations for educational psychologists who work with children of families who have experienced TBI in chapter 5.
1.7.1 Data collection methods
In this study, data has been collected by means of participant observation, document analysis and interviews. Henning et al. (2004:85) find participant observation valuable as it allows the researcher to construct knowledge in a manner similar to that which the participants are experiencing. Being a participant observer led me to record my observations, thoughts and understandings as they occurred through the research process.
Merriam (1998) explains that interviewing tends to be the best method to use when conducting intensive case studies of a few selected individuals, especially if the researcher wishes to “move beyond the surface talk to a rich discussion of thoughts and feelings” (Maykut & Morehouse, 1994:80). Four one-on-one semistructured interviews were conducted with the mother of the TBI survivor, two educators and the TBI survivor, to establish the effects of TBI on the rest of the family, and to determine how it had impacted on his post-scholastic functioning. The semi-structured interview (Merriam, 1998:72-74) was chosen as the best type of interview in that it ensures that particular questions are defined beforehand, giving a basic framework for the interview, whilst allowing flexibility for open-ended questions as well as probing questions (Merriam, 1998:80), based on the response of the participant during the interview, that lead to further exploration.
Document analysis consists of using skills and intuition to find and interpret data from the documents by thinking creatively about the problem and asking a variety of searching questions related to the research problem (Merriam, 1998:120-121). Henning et al. (2004:99) state that documents, even hand-written documents, are a valuable source of information and in this study data was obtained from
18
documented texts such as the RAF claim and medical report form, and neurological and psychological reports, including letters from the school. Analysis of data mined from these documents enabled the researcher to write a thick rich description of the case as an attempt to address the research question. A diagram outlining data collection methods for this study is presented below:
Analysis of letters from the school Analysis of reports from psychologists
Participant observation
Data Collection
Methods
Analysis of RAF claim and medical report form
Interview with the TBI survivor
Interview with mother of the TBI survivor
Interview educators for pre/ post accident scholastic data
Figure 1.1: Data collection methods employed in this study.
1.7.2 The data management process
After collecting raw data from interviews in the form of audiotapes, hospital records, letters from school and psychological records, a storage system was designed for easy retrieval. Miles and Huberman (in Denzin & Lincoln, 1994:430) contend that without a clear working scheme, data can be “miscoded, mislabelled, mislinked and mislaid”.
Hence interviews were audio-taped, transcribed and
classified into respective categories such as family and educator interviews. This included letters from school, hospital records, and neurological and psychological
19
records. They were then organised in an arch file with labelled file dividers, for easy retrieval in preparation for the data analysis process and stored under lock and key.
1.7.3 Data analysis
Data was analysed using the content analysis method, an interpretive strategy commonly used by qualitative researchers that employs systematic coding for achieving conceptual density, variation and integration. This method, according to Denzin and Lincoln, (1994:204-5) and Patton (2000:450-3), gives the researcher a “specific set of steps to follow that are aligned with good science”. In this regard, a selection of significant steps, such as the construction of a matrix, was used to connect and specify the place of micro and macro conditions that related to the data. The constant comparative method was also employed to identify emerging themes from interviews and various supporting data. The data was then clustered into categories and linked to identify themes that would emerge that related to addressing the research question.
Ethical considerations have been upheld throughout the data collection, reduction, management and analysis process.
1.8 TRUSTWORTHINESS OF THE RESEARCH
To reinforce the trustworthiness of this study, a choice of methods to enhance reliability and internal validity were used. These included an appropriate choice of the family as a case and unit of study. A research design based on a qualitative approach, that comprises data collection and analysis methods appropriate to the research study, has been used. In addition, a trail of evidence has been built (Silverman, 2001:229).
20
1.9 ETHICAL CONSIDERATIONS As part of full and careful compliance with the University of Johannesburg’s code of ethics for researchers, the study was carried out systematically and sensitively. Firstly, the participating family and educators were contacted telephonically to secure an appointment to discuss the purpose of our meeting. Secondly, a meeting was held with the prospective participants. The purpose of the research was tabled and a verbal request made, followed by an explanation of my ethical responsibility and commitment towards confidentiality and the choice the respondents had to withdraw at any time, without redress, if they felt uncomfortable. The duration and venue of the interview were also agreed upon. Thirdly, letters were written to the Gauteng Department of Education and the principal and staff at the school (see Appendices A and B). A request for hospital records from Thandi, (the mother of Bonga, the TBI survivor at the heart of this study1), was also made and agreed upon. An explanation and understanding regarding protection of identifying details was also finalised, with a commitment made to safeguard the documents under lock-and-key. Once the research was completed, all documentation related to the research would be destroyed as a further precaution to safeguard the rights of the participants.
1.10 THE RESEARCH CONTRIBUTION
This study is aimed at contributing to, and improving, the practice by educational psychologists of assessment in the medico-legal field of children with TBI. As both a researcher in this field and a practicing psychometrist, I adhere to the Ethical Code of Professional Conduct of Psychologists from the Health Professions Council of South Africa (HPCSA) of 2002 (Section 7.5, page 16), which stipulates that an educational psychologist should avoid performing conflicting roles. This is particularly sensitive since differing theories place differing emphases on where the primary help should be apportioned. For instance, in particular cases the 1
The researcher has used pseudonyms in order to preserve the participants’ anonymity.
21
educational psychologist may perceive his or her main professional duty as being to focus on the child, yet according to systemic theory, s/he may also be expected to pay attention to the psychological needs of the rest of the family or the caregiver, who in many cases are also traumatised Section 3.6.1 of the Ethical Code (2002:9) stipulates that “the child’s interest is of paramount importance”, however, the problem that lies behind my research study relates to the prevailing approach towards policy implementation in medico-legal work, which, I perceive, does not adequately acknowledge the pain that the family is feeling. I shall therefore argue that, whilst focus must not be diverted from the TBI child, rather, it is important to take into account that the child’s recovery process and long-term care is to a large extent in the hands of the family or caregiver, which is also often traumatised by the injury. It is against this background that this concern is raised where professional judgement and objectivity seems to be perceived to be compromised by lavish adherence to one section of the ethical code at the expense of the other.
1.11 SUMMARY
In this section a presentation has been made on how I have proceeded with the study, with the format of this research paper being:
Chapter 1 has outlined the rationale, significance and problem statement of the study, and the proposed methodological processes. Key concepts, significant for understanding of the language used in forensic work, have been clarified, including the presentation of the research contribution.
Chapter 2 develops a theoretical framework of systems theory through a review of the literature. The literature review will also provide an in-depth account of existing theories and knowledge that relate to traumatic brain injury and its effects on the family. This theoretical framework will aid in the design of the research and
22
describes how this will impact on the methodology employed in the collection of data.
Chapter 3 outlines the research design, describes the research methodology and the data collection methods and tools used, and explains how they were employed to gather relevant data. Ways in which the data was managed and analyzed using the content analysis and constant comparative methods, to identify key emerging themes, are presented.
Chapter 4 offers a background to the case, with interpretation and synthesis of the findings to help provide an in-depth understanding of TBI and its effects on the family.
Chapter 5 offers a summary of recommendations for educational psychologists, and presents conclusions to the study.
23
CHAPTER TWO REVIEW OF THE LITERATURE
2.1
INTRODUCTION
Creswell (in Rojewski, 2001:353) suggests that conducting an extensive literature review builds the study firmly within a body of published research and integrates the specific problem of study within existing theory. Wright, (2001:37) concurs with this view that a literature review informs the researcher of the relevant and appropriate theories and exposes him or her to proponents and opponents who share similar views or entertain divergent ones. In turn, the researcher uses revelations from existing findings to progress to new information that will attempt to answer the research question.
In researching the question of how educational psychologists can understand the experiences of a family whose child has suffered TBI, I discovered little literature relating directly to the South African context. Although there may be observable differences in terms of context, ethnic background and availability of resources between different countries, there are also common basic similarities of TBI experienced globally among families. Therefore, the literature reviewed here is drawn from a range of international sources, with the aim of providing a framework applicable to my research within the South African context.
Firstly I shall outline systems theory, as it pertains to the various systems relevant to the study, namely the individual child (with TBI challenges), the family (as a functioning unit), the education system (focusing on the school), the field of Educational Psychology pertaining to the role of educational psychologists and, finally, the sector of the medico-legal profession that deals with litigation and compensation for victims of TBI. Emerging from this review of the literature will be a theoretical framework for my research.
24
2.2 SYSTEMS THEORY
The theoretical framework of this study is predominantly built around systems theory, as described by Donald et al. (2002:47-50) as approaching different levels and groupings of interactions within the social context as ‘systems’. The assertions of Janzen and Harris (in Herbert & Harper-Dorton 2002:19) hold that systems theory explains interactions within the family as it accommodates and adjusts to its developmental challenges. Huitt (2003 online) holds that the family cannot experience this development in isolation, but it is constantly interacting with other subsystems within its internal and external environments. The fundamental principle of systems thinking stems from cause-and-effect relationships, whose premise suggests that relationships should be seen not as interactions which take place in one direction only, but as interactions that occur in circles, and as cycles (Donald et al. 2002). As a result of the interrelationship between the parts, action in one part of the system cannot be seen as a cause of an action in another part, in a simple one-directional way alone. Rather, actions are seen as triggering and affecting one another in a cyclical and often repeated pattern, resulting in the experience of such patterns as unwritten rules that govern the system as a whole.
Some of the most significant elements and processes for understanding systems, as mentioned by Donald et al. (2002:49), include:
(i)
Goals and values of a system - both openly stated and hidden goals and values of a system influence and are influenced by the system as a whole, as well as interactions with other systems.
(ii)
Subsystems within the system - although subsystems within a system are different, they do overlap at times, that is, one subsystem can overlap with another subsystem.
(iii)
Communication patterns - are important for both the system and its subsystems. They are an essential part of the functioning and interaction of the system, inside and outside.
(iv)
Roles within the system – are very significant, with their definition, and the ways in which they are acted out to preserve the open and, particularly,
25
the hidden goals of the system, often determining how the entire system functions. (v)
Boundaries - exist between subsystems, as well as between the systems and other systems outside it. This implies that the functioning of a system or subsystems is affected in various ways by the rigidity or flexibility of its boundaries.
(vi)
Time and development - require to be thought of in relation to systems, since the developmental changes in its parts will affect it as a whole. As a result, developmental changes occurring in one system can affect the developmental changes of another system.
These components will support my understanding of the family as a set of interlocking social relationships, rather than as a set of individuals.
I will now describe the anatomy of the brain as control centre for the nervous system, and examine ways in which its basic components are affected by injury. The outline may contribute to a better understanding of some of the basic issues that relate to TBI in terms of the disruption it causes, initially to the individual, and then to the family and the educational and psychological systems.
2.3 COMPOSITION OF THE HUMAN BRAIN
The brain is described by Sue, Sue and Sue (2002:474) and Hole (1993:370) as the largest and most complex part of the nervous system, which is responsible for physical sensations and cognitive perceptions. One of its functions is to issue motor commands to the skeletal muscles and perform high mental functions, such as memorising and reasoning. The major parts of the brain, according to Hole (1993:387), include the cerebrum, the largest part of the brain that consists of two hemispheres, the cerebellum and the brain stem. Its overall structure consists of two main hemispheres, namely the left and right hemisphere. Both hemispheres are covered by a layer of tissues called the cerebral cortex, a layer which is most likely damaged during traumatic brain injury.
26
The major parts are further subdivided into four lobes, namely, the frontal lobe, parietal lobe, temporal and occipital lobes. The brain is protected by a series of membranes which lie between the inner and outer surface within the skull. It is also protected by a fluid, called the cerebrospinal fluid (CSF), found in the complex series of canals and cavities deep inside the brain.
2.3.1 The function of the brain and the central nervous system (CNS)
The two hemispheres are mounted on a central stalk of tissue (brain stem), which continues to the spinal cord; a basis of an interconnected communication system that relays information through the nerve pathways, horizontally and vertically through the body. The functions of the cerebral lobes according to Hole (1993:376) are outlined below:
Table 2.1: The functions of the cerebral lobes (taken from Hole 1993:376) LOBES
FUNCTIONS
1.Frontal
Carries on with higher intellectual processes such as those
lobes
required for concentration, planning, complex problem solving and judgement of the consequences of behaviour. Controls the motor area movements of voluntary skeletal muscles.
2.Parietal
Responsible for sensations of temperature, touch, pressure and
Lobes
pain involving the skin
3.Temporal Sensory areas responsible for hearing. Other associated areas lobes
function in interpreting sensory experiences and in remembering visual scenes, music and other sensory patterns.
4.Occipital
The sensory areas are responsible for vision and other
lobes
associated areas, and function in combining visual images with other sensory experiences.
In addition to the outlined function of the cerebral lobes, Hole (1993:387) further mentions the functions of the cerebellum and the brain stem respectively, and
27
suggests that the former is to communicate with other parts of the CNS as a centre for integrating sensory information concerning the position of the body parts, coordinate muscle activities and maintain posture. Damage to the cerebellum could result in tremors, inaccurate movements of voluntary muscles, loss of muscle tone, and a reeling walk and loss of equilibrium. Meanwhile, the function of the later, the brain stem, is to conduct ascending and descending impulses between the brain and the spinal cord. A diagrammatic outline of the brain’s location in the skull is represented below:
Figure 2.1: Structure of the human brain (taken from Hole, 1993:374)
This diagrammatic representation helps in associating particular functional impairments with specific areas of injury of which TBI is one example.
28
2.3.2 Other forms of brain Injury
Amid the commonly known causes of brain injury that relate to this study, Rich (2005:2) mentions other types of injury which include stroke, brain haemorrhage, encephalitis, and anoxia, defined as follows:
(i) Stroke: is the most common cause of brain injury, occurring when blood vessels become blocked by a blood clot. As a result, brain cells die beyond the obstruction because of lack of oxygen.
(ii) Brain haemorrhage: is bleeding inside the brain from a burst blood vessel, where, blood leaks out into the brain tissue or into the cavity between the brain and the skull. Injury is then not caused by the lack of blood supply to the cells, but by a build up of pressure on the cells as blood continues to be pumped up from the blood and accumulates into the non-availability of space within the skull
(iii) Encephalitis: is an inflammation of the brain as a result of an infection. It is usually caused by a virus that may be transmitted through the mouth and nose into the brain along nerve fibres which split and divide to reach across into all the different areas to attack the cells. This implies that brain damage through encephalitis may be more scattered than that resulting from other types of injury
(iv) Anoxia: is an interruption in the supply of oxygen to the brain from any other cause, such as cardiac arrest, an anaesthetic accident, near drowning or carbon monoxide poisoning. As a result serious injury to the brain is experienced.
The above forms of acquired brain injury may or may not overlap with injury caused by accidents. However, TBI has its own specific parameters which are now defined.
29
2.4 TRAUMATIC BRAIN INJURY (TBI)
TBI is defined by Degeneffe (2001:25) and Rose and Johnson (1996:15) as injury caused by an external force to the brain resulting in two types of injury, namely, open head injury or closed head injury. Open head injury is experienced when the skull’s protective layer of tissues and the fluid surrounding the brain are penetrated by an external object (for example a bullet) causing damage to tissues, blood cells and bleeding. Whereas, closed head injury, is often sustained from a blow by a blunt object, or by falling or due to a motor vehicle accident on the road. In this instance, visible injury may not be evident because the brain is encased in a solid skull. As a consequence, damage to two specific areas of the brain can be experienced, resulting from the impact of the blow, causing the brain to injure itself against the inside of the hard skull.
The initial most seriously affected area will be beneath the point where the blow has impacted on the head. The second area will be on the opposite of impacted side, inside the head. In general, we often do not take a bump or a blow to the head very seriously, especially when there is no visible open wound. Rose and Johnson (1996:16) affirm that, closed head injury can be perceived by an ordinary person as a minor accident because of lack of visible injury, yet it can result in severe injury. Stuart (2004:329) argues that the high prevalence of TBI and its potential severity has led brain injury to be termed a ” silent epidemic” due to the widespread lack of knowledge about it. She further purports that there are relatively limited resources available for persons with TBI compared to those available for persons with other disabilities. The focus of this study is on the child who has suffered a closed head injury which results into traumatic brain injury (TBI) that has been sustained through involvement in a motor vehicle accident (MVA). Thus, suffering TBI is unique for every individual, as its effects can result in the experience being classified as mild, moderate or severe TBI.
30
2.4.1 The severity of injury
TBI is initially assessed according to MacDonald, Togher and Code (1999:20), immediately the survivor enters hospital from the scene of an accident and when the survivor leaves the hospital after medical treatment, to join his or her family. The assessment scale commonly used to determine the extent of the injury is called the Glasgow Coma Scale (GCS), developed by Teasdale and Jeanette (1976). It is the most frequently used clinical tool to grade head injury severity, according to Heitger, Macaskill, Jones, and Anderson (2005:109). The GCS generates a numerical summed score for eye, motor and verbal abilities. This numerical score is then used to quantify the severity of the injury. These researchers illustrate TBI below by classifying the severity in three categories within the Glasgow Coma scale range of 3-15. TABLE 2.2: The three categories of the severity of TBI (Tabulation of Teasdale & Jeanette, 1976 by MacDonald et al.,1999:20) SEVERITY Mild
GLASGOW COMA SCALE 13-15
PERIOD OF COMA The
survivor
becomes
unconscious for less than 1 hour Moderate
9-12
The
survivor
becomes
unconscious for 1-24 hours Severe
3-8
The
survivor
becomes
unconscious for more than 24 hours
2.4.2 Mild Traumatic Brain Injury (mTBI)
MacDonald et al. (1999:20) note that a survivor who scores 13-15 on the scale, and improves within 48 hours of hospital treatment, can be classified as having experienced ‘mild TBI’, which according to Heitger et al. (2005:109) includes: “a brief loss of consciousness in combination with post-traumatic amnesia (PTA) for
31
a duration of less than 24 hours, followed by disturbances of neurological function”. On the other hand, Rich, (2005:2) describes mild TBI as “an injury to the brain in which there is no loss of consciousness at all – a person is knocked out for just a few minutes, and remains dizzy or dazed and perhaps feeling sick for a little while longer”. Rich further explains that there are two particular observable symptoms that are used to define the severity of brain injury, these being loss of consciousness and PTA. She claims that PTA endures for a period of time after injury during which the survivor is confused and disoriented, and the longer the two symptoms last the more severe the injury.
Although these views seem to be taken from different perspectives, there is an apparent overlap of evidence in the way they use concepts, for instance “unconsciousness”, ”brief loss consciousness” and ”knock out for just a few minutes”. These suggest that, in mild TBI, loss of consciousness is experienced, albeit for a short duration.
Morris (2001:239) postulates that the majority of the children and adults who survive mild or moderate and severe TBI remain with physical, cognitive emotional, behavioural and social impairments that interfere with daily living. Some of the characteristics of mild TBI mentioned by MacDonald et al. (1994:20) include observable symptoms, such as headaches, nausea, blurred vision and drowsiness, within the first few days following discharge from hospital. These symptoms clear after some time but the survivor may experience difficulty reading for more than a few minutes. Absent-mindedness and irritability may be evident, due to a limited attention span, which often results in headaches. Heitger et al. (2005:115) further claim that although neural damage does occur in mild TBI, the impact of the injury does not always reach the deeper brain regions. Injury is predominantly experienced in the frontal temporal and parietal cerebral areas. (See figure 2.1)
32
2.4.3 Moderate TBI (moTBI)
Moderate TBI is a category of brain injury that falls between the minor and the severe category, as defined by the Glasgow coma score (Parker, 1990:282). Moderate TBI, according to McDonald et al. (1999), is diagnosed when the survivor becomes unconscious between 1 and 24 hours after the accident and the Glasgow coma score ranges between 9 and 12. Parker adds that in this category of TBI there is a higher incidence of focal lesions, as compared to the minor category. This includes headache complaints and memory problems. However, Rich (2005:2) claims that, in moderate TBI, loss of consciousness lasts between 15 minutes and 6 hours, while PTA lasts for up to 24 hours. If these symptoms exceed this period, TBI can be considered as severe.
2.4.4 Severe TBI (sTBI)
A survivor who scores between 3 and 8 on the Glasgow coma scale, and becomes unconscious for more than 24 hours, according to McDonald et al. (1999), can be classified as falling within the severe category of TBI. The research findings of Cattelani, Lombardi, Brianti and Mazzucch (1998:283) outline specific deficits that are evident in a severe TBI survivor, namely in the areas of intelligence, problem-solving, language-learning, memory and psychomotor performance. Cattelani et al. (1998) suggest that these deficits are sufficient to interfere with school re-entry and require appropriate medical rehabilitative and educational strategies. Vakil, Sharot, Markowitz, Aberbuch and Groswasser, (2003:825) add to this view that the deficits that follow severe TBI include limited attention capability and an inability to learn new verbal or visual material. StewarttScott and Douglas (1998:317) further highlight that university education is not usually seen as relevant for the TBI population because their findings suggest that individuals who have suffered TBI have a low educational attainment. StewartScott and Douglas (1998:328) indicate that, in TBI, executive functions such as initiative, planning, problem-solving and decision-making ability are commonly impaired following injury. Such deficits are particularly detrimental to learning, as will be discussed below.
33
2.4.5 Recovery after TBI
Recovery is defined clinically by Meier, Strauman and Thompson (1987:84) as a return to probable independent functioning after TBI within the family and community. Meier et al. (1987) claim that due to a lower mortality rate of TBI in children as compared to adults, children within the ages 1-10 years old and tend to
display
quite
a
remarkable
clinical
recovery
as
well
adolescents.
Neuropsychological recovery, according to Lannoo, Colardyn, James and De Soete (2001:11), occurs in the first six months post-injury, and recovery patterns vary due to injury severity, coma duration, PTA duration, age, treatment and preinjury factors. Although TBI seems to cause considerable neural injury throughout the brain, the survivor does progress towards recovery to some extent. However, signs of recovery may not be as evident as one would anticipate. Recovery from brain injury can be slow in the first year or two, with improvements continuing at a slow pace. Although nerve and brain tissues do not regenerate, the brain is adaptable and can learn new ways of accommodating a problem or getting around it (Davies, 2001:online).
Parker (1990:290) points out that there is a notifiable difference that exists in patterns of recovery between adults and children. He suggests that after injury, children have less accumulated knowledge and established skills on which to rely, hence acquisition of new skills may be adversely affected, especially within the learning environment. Therefore, while the need for cognitive ability and autonomy may be greater as children grow older, interference of development in one function due to injury may have a cumulative effect on other subsequent developing functions.
Thus, while the TBI survivor is recovering, some authors (Gerring & Carney, 1992; Janus, Mishkin & Pearson, 1997 in Power et al., 1999:255), indicate that the survivor is involved with many agencies and professionals, such as medical and neuropsychological staff of the hospital. As a result, if the survivor has already reentered school, professionals from the school and family members form the most
34
significant support structure throughout the various stages of recovery. Such collaboration amongst the various structures and systems is suggestive of the significance of the information collation process of scholastic and emotional functioning of the TBI survivor during the initial re-entry stage after injury. To facilitate available support resources in the school during the process of re-entry, curriculum accommodation would have to be made, including adaptations to meet the survivor at his/her level. This includes effective interventions and methods for monitoring of progress during the course of recovery.
Rich, (2005:67) resonates that, the brain continues to heal itself for the rest of its life, even if it appears and feels as though there is no movement at all. The challenging neuropsychological and neurobehavioural symptoms do disappear over time, however minimally, with a comprehensive rehabilitation programme that integrates appropriate medical and educational interventions, including family support.
2.5 TBI REHABILITATION
Although Greenspan and Mackenzie (2000:417) ague that rehabilitation may never fully restore the survivor’s pre-injury status, it has been considered as the most significant aspect for brain injury outcome within the context of TBI. Rich, (2005:35) and Ignatavicius (2006:119) describe rehabilitation as a process of restoring a disabled person to some degree of normal life functioning, through appropriate training. Depending on the severity of injury, the rehabilitation process may include activities such as, getting dressed, washing in a shower or bath, making a cup of tea and a snack, climbing the stairs, eating using a spoon or knife and fork and other activities that affect daily living.
Residential care is often considered as a viable option if the desired outcomes from training are not reached. The decision is taken based on the conditions that independent living is unattainable and family members are unable to provide necessary care and safety. While Eker, Schalen, Asgeirsson, Grande, Ranstam
35
and Nordstrom; (2000:717) assert that rehabilitation does benefit TBI survivors, and does improve functional outcomes. They further suggest that a more aggressive and comprehensive approach to TBI rehabilitation yields significant outcomes, especially when early intervention comprises highly specialised brain injury programmes. Thus, in the light of the above assertions, an attempt to determine effective approaches to rehabilitation programmes will be examined by contrasting the medical model with the strength-based or asset-based approach.
2.5.1 The strength-based approach vs. the medical model
Greenspan and Mackenzie, (2000:419) outline various services that are offered in a rehabilitation centre. They mention that generally, services that are offered include mental health services, family counselling, cognitive therapy, physical therapy, occupational therapy, and speech therapy. Social services include the use of information and referral services, respite care and special recreational services. Although they have outlined different services that are expected to be available in rehabilitation centre, they are concerned that little is known about the extent to which children receive rehabilitation services, particularly children with less severe head injuries.
Greenspan and Mackenzie, (2000:427) claim that, children with such injuries may have subtle deficits which may not be identifiable, during the initial hospitalisation stage. The deficits may not be apparent until after the child returns home, and at times such deficits may not become apparent until 2 or 3 years later. These assertions suggest that not all survivors of TBI receive rehabilitation services, and also, rehabilitation services depend on the severity of the injury. Yet, not receiving the services does not imply that the services are not desirable, the need for services may not be apparent immediately after injury. As a matter of fact, an examination of the two approaches to rehabilitation will shed some light on what to expect from an effective rehabilitation process.
Firstly an outline of principles from the strength-based approach by Saleeby (in Rowlands, 2002:276) includes the acknowledgement of strengths, assets,
36
resources that every individual or family has and the significance they possess for the recovery process. Secondly, the approach also notes the potential to provide an opportunity for growth with specific reference to TBI survivors and their families. While on the hand, the medical model according to Handy (in Rowlands, 2002:277) aims at assessing the survivor for inability, treating the impairment, and retrain the survivor for the deficit. Instead of looking for what is stopping the rehabilitation process from achieving the envisaged outcomes of recovery and addressing the barriers.
Thirdly, the strength-based perspective, according to Nochi (in Rowlands, 2002:276) challenges practitioners to consider values underpinning their practice, as to whether they are holistic or inclusive in their approach to recovery. Fourthly, this approach encourages professionals to review their patient-professional role and its effect in the facilitation of the recovery process. It also promotes intervention strategies that are supportive to TBI survivors and their families. This perspective suggests that an understanding of the experience of TBI survivors from their frame of reference is important, and this approach requires practitioners to regard survivors as individuals who are similar to them. The asset-based approach to rehabilitation provides a better understanding of the TBI survivor within the context of family and contributes towards processes and strategies that can be used to enhance family adjustment.
Fifthly, Rowlands, (2002:276-7) and McKinlay and Watkiss (1996:122-3), add that practitioners need a shift away from considering the TBI survivor as the only person who requires intervention from health professionals as opposed to intervention aimed at supporting the survivors’ support network aimed at the facilitation of recovery. Their claims hold that the medical model with a deficit orientation focuses on fixing the TBI survivor. This approach is contrary to the inclusive approach to recovery, which acknowledges different challenges to the rehabilitation process and identifies societal and environmental barriers as targets for change.
37
Lastly, using intervention programmes that have their thrust on the strength-based approach imply that the family of the TBI survivor is viewed as a stakeholder who forms part of the team of practitioners, works together with the practitioners towards a common goal of the healing process. Consequently, the envisaged outcomes of the TBI recovery process will be achieved with minimal barriers and maximised benefits, for all parties. Nonetheless, although TBI seems to hurt families, it is preventable, insofar as the cause can be avoided.
2.5.2 TBI prevention
It has been estimated that the incidence of TBI in South Africa is approximately ‘316 of every 100 000 people a year,’ (Grieve, 2002:62-3) and the most common cause of TBI is motor vehicle accidents (MVA). This according to Grieve, accounts for approximately half of all brain injuries both in South Africa and elsewhere. Thus, while TBI is still viewed as the number one cause of death and disability among young people, society does not fully understand the effect of brain injury yet, according to Esq (1998:80). This challenge is further aggravated by minimal availability of educational resource programmes, lack of accessibility to public information that relate to TBI, as well as unavailability of information for the identification of effective strategies for the prevention of brain injury for public use.
The contributions of Diamond and Macciocchi, (1998:817) resonate with this view and add that information on head injury prevention is provided significantly lesser in the primary care setting as compared to other risky behaviours that cause illnesses, such as heart disease, diabetes, cancer and sexually transmitted diseases. Where as, the availability of information for TBI prevention would raise awareness on TBI issues to communities and would impact positively on reduction of the prevalence.
However, Morris (2001:241) affirms that increase in knowledge about TBI plays a significant role in the perception of brain injury. He cites that intervention in TBI has been based on the medical model; and the family has often been neglected as a significant party for the healing process. As a consequence, this limited
38
approach to TBI, poses a significant challenge, to the moral and ethical responsibilities of intervening professionals. The deficits that are often evident after TBI, have a huge impact on the survivors’ scholastic achievement, and this in turn impacts negatively on the individual’s selfesteem and social status. The profound effects of TBI do not only affect the sufferer, the family also gets affected. Particularly significant, is the extent to which the injury is not clearly understood within the community, the school and even the Educational Psychology field, which results in the family having to cope largely on its own.
However, despite attempts at prevention, occurrences of TBI will persist and in levels of rehabilitation will vary from case to case. Unfortunately, in many cases, the deficits will continue to have a huge impact on the survivor’s family and the individual’s scholastic achievement, in turn impacting negatively on the individual’s self–esteem and social status. I shall now review literature on the effects of TBI on the respective systems, firstly on the individual’s learning within the education system, then on the family and finally as it is relevant to answering the research question of educational psychologists’ understanding of the experiences of a family whose child has suffered TBI.
2.6 THE EFFECTS OF TBI
When a child experiences TBI, his/her neurological functioning becomes compromised
by
the
accident.
Both
the
neuropsychological
and
the
neurobehavioural deficits become evident. This implies that neuropsychological symptoms as outlined by Bamdad, Ryan and Warden (2003) and Ylvisaker (1998:130) such as executive functions; those abilities that allow individuals to efficiently and effectively engage in complex goal-oriented activities that include awareness, initiation, planning, organisation, goal setting and goal modification are adversely affected. This includes self control, self-management and selfregulation. As a consequence, when executive functions are not intact, the TBI
39
survivor may not be able to perform basic tasks successfully and independently within the social environment.
Secondly, there are neuro-behavioural symptoms such as personality changes, which affect the emotional, cognitive and behavioural domains. Thus change in behaviour has been identified as the most common and pervasive aspect that is characteristic
of
sudden
and
rapid
mood
changes,
aggression
and
argumentativeness due to poor judgement. This lack of emotional control causes embarrassment to families and caregivers. Most frequently, caregivers report extreme emotional distress in children who survived TBI as explained by Parker (1990:303).
Traumatic brain injury (TBI) is described by as a major cause of death and acquired disability in children (Tanya, Rapport, Coleman & Hanks, 2002:155), and confirming the findings of Fenichel, Hynd and Willis (in Parker, 1990:289). Tanya et al. (2002) claim that, most commonly, families whose children survive TBI are left to adjust to changes and responsibilities required for long-term care of their injured family member. According to Mokhosi and Grieve (2004:301) TBI accounts for more than a third of all deaths that result from injuries, It is from this perspective that the sufferer is regarded as a ‘survivor’ from a fatal accident rather than a victim. The survivor, however, often suffers enduring injuries.
Parker (1990:290) mentions that at times, other impairments after TBI are often not recognised within the school or medical environment. Parker asserts that children often do not receive medical follow-up within the school and professionals are often not appropriately trained to rehabilitate or support the brain-injured child. As a result, the burden of injury remains largely with the family. This experience subjects the family to distress, of having to care for the survivor, an added responsibility that challenges and strains the day-to-day family activities. Most often, family relationships are disrupted and family adjustment becomes delayed. Consequently, recovery from trauma, for both the survivor and the family, is adversely affected.
40
In examining the impact TBI can have on the survivor and family, Rowlands (2001:273-274) reports a loss of dignity, autonomy and participation in the community. Rowlands further explains that the majority of survivors of TBI do not have friends; they suffer from a lack of social identity and do not get involved in productive community activities. In turn, personal development becomes interrupted, causing interference in personal long term plans, such as career goals. Opportunities to develop new relationships become limited, due to compromised social skills and reduced self-esteem, resulting in isolation and depression, which forms the key observable burdens of TBI, whose effects increase with the severity of injury, and impacts negatively on learning.
2.6.1
TBI and its impact on learning in children
Parker (1990:303) holds that the prevalence of extreme disruptive consequences of brain injury are greater in children because injury has occurred to a brain that is not yet fully developed, and the learning of basic coping skills have not yet occurred. This results in children experiencing feelings of anxiety, poor social skills, feelings of inferiority from rejection and incompetence in scholastic tasks; including feeling antagonised by educators and peers, subjecting them to stress, withdrawal, vulnerability and fatigue. According to the findings from the Family Caregiver Alliance (www.caregiver.org), the consequences of brain injury include deficits in the cognitive, perceptual, speech and language, personality, motor abilities and the development of seizures.
Cognitive abilities, after TBI are affected, due to injury to the prefrontal areas of the brain, the most vulnerable part of the brain in closed head injury according to Levin (in Ylvisaker, 1998:130). The consequences of the injury include shortened attention span, short-term memory problems, problem solving challenges and an inability to understand abstract concepts. Ylvisaker (1998:131) notes that difficulty paying attention in class because of lack of comprehension or organisational skills form part of the outcomes of injury of executive functions. As a result, challenges such as attending selectively and maintaining focus become common attentional
41
problems experienced by TBI children and often results in daydreaming in the classroom.
Perceptual abilities are affected after TBI as a result of the impairment of high cognitive processes or impaired executive control over attentional or perceptual processes according to Ylvisaker (1998:130-1). The effects include difficulty shifting perceptual focus in a flexible manner, ineffective simultaneous processing of the object of perception and contextual cues. Other possible effects may be changes in hearing, vision, taste, smell and touch, loss of sensation of body parts, left or right side of body neglect which culminates from a neglect of visual field or visio-spatial disorientation. Consequently, these multiple challenges may slow processing and motor planning ability. The slower motor task ability may then result in decreased academic performance in school, particularly without appropriate curricular accommodations, such as reduced task complexity and the provision of extra time.
Speech and language deficits may occur after TBI, in this case speech deficits may be experienced as a result of poor control of speech muscles as well as poor breathing patterns. Additionally, language deficits include difficulty in expressing thoughts and understanding others as well as difficulty identifying objects and their function. As a result, reading, writing and ability to work with numbers in a learning environment become more difficult.
Personality changes include apathy, decreased motivation, emotional instability, depression and disinhibition. Experience of such features often results in temper flare-ups, aggression, cursing, lowered frustration tolerance and inappropriate sexual behaviour. As a consequence, the ability to socialise is impaired due to self-centred behaviour and diminished self-critical attitude, and these impacts negatively on social competency skills that are important for social functioning at school. However, personality changes improve with training and gradual recovery from TBI.
42
Motor deficits, include paralysis of the limbs, poor balance, lower endurance, reduction in the ability to plan motor movements and poor coordination.
Regulatory disturbances, include increased fatigue, changes in sleep patterns, as well as loss of bowel and bladder control, which often affect the schooling process adversely.
Seizures may occur when there is unusual electrical activity experienced in the brain. Rich (2005:7) describes seizures as originating from damaged and broken nerve cells that carry impulses around the brain. As the brain tries to heal by repairing itself ‘it may wire itself up wrongly’ and consequently due to the abnormal connections, seizures or fits may result. According to Rich, it is common for a person who has suffered a brain injury to develop some form of epilepsy.
Douglas (1998:317) maintains that while educational achievement remains a major source of every individual’s self-esteem and social status; undoubtedly, the effects that cognitive deficits have on learning are huge. Compromised cognitive ability affects anxiety, lowered self-confidence and reduced motivation to learn. Douglas (1998:328) affirms that when executive functions are impaired following TBI, coping with evident changes may prove difficult for the child in a school environment. Hence, support and guidance is necessary. Unfortunately, this experience can affect the length of time taken to complete schooling. Thus, potentially delay is experienced in progression to the next level in a learning environment and completion of studies for transition to the world of work as well as the acquisition of financial independence.
On the other hand, the quality of life of young adults who have suffered severe TBI, seems to be poor in almost all cases. According to Cattelani et al. (1998:293294) compromised cognitive ability, subsequently leads to non achievement in scholastic tasks, and often leads to dropping out of school which ultimately results in joblessness impacting hugely on the family system.
43
2.7 THE FAMILY
The family of a TBI survivor tends to be the most adversely affected by the outcome of brain injury. The findings of Nabors, Seacat and Rosenthal (2002:1039) affirm that TBI has a long-term negative impact on the family. They further note that the family of the TBI survivor experiences significant levels of stress, depression and anxiety. Orto and Power (1994:3) express the intensity of impact that TBI has on the family:
No words or feelings are adequate to express the comprehensive sorrow, pain, anger, disappointment and hope shared by persons and families changed and challenged by the impact of head injury… This change is a result of complex and long-term demands placed on the family system. These demands can rapidly deplete the most resourceful families, magnify its difficulties and result in intergenerational, emotional physical, as well as financial bankruptcy… A common denominator for families is that they have been changed forever.
Most notably, family needs, functioning and adjustment are severely compromised by TBI experience. The presentation of this section is aimed at addressing the quest to examine and understand family experience by defining and describing the concept ‘family’ and examine in depth the different types of family organisational forms, cycles and systems, and how they function in relation to the effects of TBI.
2.7.1 Defining the family
A family is defined by Dallos and Draper (2000:09) as a primary social agent for the promotion of health and well-being in individuals. Confining the description to a single definition will be very narrow since the view of what constitutes a family has changed over the years, within different societies, cultures and traditions. However, Dallos and Draper suggest that some accounts from research used to capture the aspects of family life use two different approaches. The first approach is based on the view that some family members appear to make autonomous
44
decisions about their lives. The second follows a suggestion that family life is characterised by repetitive, predictable patterns of actions, and when family members are faced with difficulties and challenges, they find ways of managing their challenges as they proceed through their developmental cycle. The above mentioned explanation attempts to demonstrate two propositions about family life, suggesting that the outcome of family reaction to crisis or trauma is directly related to the family’s interactive patterns of their daily lives.
The family seems to be a basic source of security and support in all societies, as well as a springboard for physical, emotional, cognitive, moral, social and spiritual development. However, according to Donald, Lazarus and Lolwana, (2002:246249), this has not always been the case in Africa, particularly not in South Africa. They report that family development has been severely disturbed by westernisation, urbanisation, migrancy laws, occupancy laws and other forms of discrimination that have further contributed to the disruption of many South African families. Donald et al. (2002) further add that the development of families in South Africa has never been progressive, when combined with the prevalent socialeconomic challenges such as poverty, unemployment and the HIV/AIDS pandemic. Their description of a family leverages on the notion that it is a grouping that is usually created from an initial coupling of two people who may become parents of children and later grandparents within the same homestead, held by a unique interpersonal system. And most significantly, their approach to family description rests in the view that a family is the main vehicle that transmits broader community and social values.
2.7.2 Effects of TBI on the family
The findings of Hibbard, Cantor, Charatz and Rosenthal (2002:124) outline that TBI leaves the family with an immense challenge of caring for the survivor. Changes in the physical, cognitive, emotional and behaviours of the TBI survivor have a direct impact on the family. They report that the family frequently experiences these changes as loss of educational opportunities, family financial
45
drain, hampered family interaction, change in family life cycle, family roles and family functioning.
Mokhosi and Grieve (2004:303) report that most commonly, families have to face the responsibility of long term care of TBI with minimum appropriate knowledge available on how to support their injured family member. Additionally, Morris (2001:250) mentions other factors that exacerbate anxiety, such as lack of information regarding diagnosis, prognosis, medication and knowledge that relates to the follow up of treatment for the TBI survivor. Morris further suggests that information for caregivers would alleviate uncertainty and increase understanding of the recovery process and appropriate care.
Some of the effects of TBI that impact negatively on the family are outlined by Tanya, Rapport, Coleman and Hanks (2002:155). They explain that TBI has a negative impact on the neurological functioning of the survivor, and mention two categories of neurological deficits that are experienced after TBI, namely, neurobehavioral and neuropsychological functioning.
Adolescent neurobehaviour is noted by Parker (1990:302) as including temperamental behaviour such as impulsivity, explosive outbursts of anger, irritability, lying, stealing, poor goal orientation, low frustration tolerance and poor motivation. Parker notes that such challenges subject TBI adolescents to risky behaviour that often leads them into further misbehaviour, such as the use of alcohol, reckless driving and other dangerous acts that may be motivated by their poor judgement. At times, such risky behaviour becomes too overwhelming for the caregiver, and often too difficult to be controlled by the entire family, resulting in feelings of helplessness.
The lack of an occupation amongst parents tends to influence the perception of maladjustment in their eyes and those of the family, affecting the system adversely. Lezak (in Morris, 2001:239) highlights that the disability of functioning following brain injury is “considerably greater than the cumulative effects of the parts”, and further suggests that although some families appear strengthened by
46
the difficulties they face following head injury, most “hobble along” crippled by pain from unending and unrecognised problems. Bamdad et al. (2003:1012) add that survivors with impaired executive functioning often require more supervision from family members, resulting in a decrease of the amount of time available to the family for social contacts and other needs, thus disrupting the family organisational patterns.
2.7.3 Family organisational forms
Donald et al. (2002:47) believe that if one family member experiences some stressful dramatic event, the whole family system will tend to respond to that event in a manner that the family usually responds, when it has a crisis. Gladding, (1998:41) asserts that, generally, trauma is stressful and often occurs unexpectedly. It can temporarily or permanently upset a family’s organisational ability and adaptability from its normal way of functioning. He confirms that the effects of trauma on the family causes tension and may give rise to dysfunctional behaviour in the family system.
Gladding (1998: 42-45) further argues that, stressful events affect families structure and functionality differently. In addition, he further demonstrates the following three common organisational patterns of family behaviour that determine response to family crisis or trauma: namely the Symmetry/Complementary, Centripetal/Centrifugal and the Cohesive /Adaptable form:
(i)
The Symmetry / Complementary form: Gladding explains a symmetrical relationship as one in which each partner tries to become competent in doing necessary or needed tasks. Difficulty in this relationship occurs when partners compete with each other in doing tasks in which the other member is not competent. In a complementary relationship family roles are defined more rigidly and differences are maximised. In this instance, one member is either dominant or submissive and logical or emotional. If one of the members fails to do their tasks, other family members become adversely affected. The similarities of the two forms
47
could be that both relate to a family that may have experienced trauma and had to quickly adapt to the new family demand. Frequently, the occurrence of the above mentioned characteristics demonstrated in the symmetry form tend to be prevalent in a family which may not have had an opportunity to clearly define its roles, expectations and purpose of their intentions. Probably due to the abrupt occurrence of the trauma or maybe, communication patterns that relate to family goals in general may not be existent. Whereas, the complementary form differs from the former in the sense that roles have been defined. Yet, their operational patterns lack flexibility and emphasis seems to be on what they cannot do rather than what they can do with the available resources. Much as the two forms may attempt to address the circumstances of trauma in the family they both require modification. (ii)
The Centripetal/Centrifugal form: The concept centripetal is used to describe a tendency to move towards family closeness and centrifugal describes the tendency of the family to move away from each other. Gladding explains that in all families there are periods of both closeness and separation. However, extremes in either, centripetal or centrifugal style is likely to produce a poorly functioning family.
(iii)
The Cohesion/Adaptability form: This category is explained in terms of Olson’s (1986) Circumflex Model of Marital and Family Systems (as quoted in Gladding). The above mentioned forms have two dimensions which consist of four levels each. Cohesion is said to range from low to high on the following categories: (1) disengaged, (2) separated (3) connected (4) enmeshed. Research findings indicate that high levels of enmeshment or low levels of cohesion may be problematic for families. Adaptability is explained as ranging from low to high and is categorised with the following characters: (1) rigid, (2) structured, (3) flexible, and lastly, (4) chaotic. Gladding mentions that families operating within the structured and flexible categories have moderate levels of family functioning.
48
The organisational patterns of family life outlined above demonstrate the significance of family adjustment patterns towards TBI and relate the causative factors that may contribute towards maladjustment during TBI family experience. This may lead to conclusions that TBI families that seem to be very high or very low on both dimensions may exhibit some signs of dysfunctional behaviour, as a result, may not be able to cope with TBI. However, Gladding further indicates that some of the factors that may contribute towards the families’ ability to cope with stress include having an ability to identify the stressor, and view the stressor as a problem. Secondly, using a solution-oriented approach to the challenge rather than using blame.
Thirdly, tolerance towards other family members and having some considerable role flexibility during times of stress is very important. He adds that during times of stress, it is significant for family members to utilise their resources appropriately whether they are inside or outside home. Lastly, if a family tends to move closer in times of crisis and identifies the stressor rather than using blame, chances of surviving a crisis or trauma will be greater for such a family, than that of a family which has a tendency to move away from each other during trying times. Unfortunately, this organisational pattern stifles family growth, developmental cycle and progress.
2.7.4 TBI and the family cycle
The family life cycle (Dallos & Draper, 2000:36; Donald et al., 2003:83) relates to family development and progress over time with regard to structure, composition and function. These authors believe that the key aspect of life cycle is on how families respond to change and adaptation internally as well as externally. They provide an example that a family’s composition would change through birth of a child, divorce or death. This emergence would frequently be associated with such life cycle transitions, coupled with the demands and stresses they bring to the family. Their affirmations suggest that the most significant point in family life cycle is the understanding of how families attempt to maintain identity and structure while they continue to evolve, adapt and respond to external stimuli. This
49
understanding can result in a shared reality of the common patterns that shape family interactions and developmental milestones.
It is important to note the effects of TBI on family development. Surviving TBI can also result in a broad range of disabling experiences, such as interruption of personal and family development, life plans, career goals, and identity. Thus, a significant and negative impact on family development may be experienced. Webster-Stratton and Herbst, (1994:53) and Rowlands (2001:274) affirm that major family disruptions such as divorce and family disintegration, emanating from isolation by the siblings who feel excluded by the caregiver or parent due to escalating responsibilities for the TBI survivor result in family members’ experiencing frustration within the family system because of their unmet needs and lack of understanding of caregiver demands. The experience of resentment and withdrawal by the caregiver can reduce opportunities to develop new relationships and sense of purpose towards the family challenge, resulting in the increase of family burden from injury and yield devastating implications for the caregiver including family functioning.
2.7.5 TBI and family functioning
Brown (2004:78) views families as units of a larger system in which they belong, and he believes that they do not live in isolation. This view confirms systemic thinking, where the family is perceived as a unit which functions through an internal organisation of its sub-systems (couples, parents, siblings). Brown asserts that, when the functioning of the family’s sub-systems breaks down, qualities such as leadership, harmony and balance are compromised. As a consequence the ability to manage the crisis or stressor becomes negatively affected. According to Donald et al. (2002:223), a family with a good functioning system of leadership has positive family interactions, and the needs of its members are met, resulting in a harmonious family interaction and sustainable interdependence.
This atmosphere enables the family to manage the stressor positively and the other different sub-systems which consist of grandparents, parents and children,
50
will interact with each other as a balanced unit, within their larger, sometimes termed ‘extended’ system as a form of support. This view includes single parent families, with one stable caregiver, whose functioning can result in a healthy caring and supportive relationship. Most particularly and commonly, it could be either the mother or father who performs the function of caregiver. However, in the South African context a grandmother or a relative can also fulfil the parenting role and contribute significantly with other intervening stakeholders in ensuring the wellbeing and comfort of the survivor. One significant aspect in the success of the family’s ability to care for and support the survivor is financial. Although many families are not aware of this, in order to meet the demanding costs of long term care, they may claim compensation for the injury and loss. This in itself can be a lengthy and complicated process, requiring the family to engage with other systems, namely the medical and legal professions. There follows a brief overview of the procedures involved in compensation cases, to be followed by examination of the role of the educational psychologist in the process.
2.8 TBI COMPENSATION FOR PAIN, LOSS AND SUFFERING
Survivors of TBI do qualify for recourse or compensation from the RAF for loss and suffering. It is possible to take legal action against the government with regard to road safety policy. The government’s transport policy has a significant role to play in overall road accident prevention and compensation for victims who suffer in pain and loss from negligent motorists. Although, there are established rules for motorists to comply with, such as the introduction of lower speed limits (60 kilometres per hour) and the building of speed humps in residential zones, as an attempt to reduce of casualties, the reduction of road accidents is not very significant (Barnes, 1996:163-4).
51
2.8.1 The litigation process
The litigation process aimed at compensating the TBI survivor for pain, suffering and loss rests in the hands of the firm of attorneys who have been appointed by the family to file a lawsuit against the state for negligence of the road user whose car has led to the experience of the road accident The process of litigation for personal injury according to Rose and Johnson (1996:192) requires a team of experts to make a representation in court on behalf of the TBI survivor as their client. The firm of attorneys that has been appointed to coordinate and facilitate the litigation process then appoints a team of experts to assist in consolidation of the claim for compensation from the RAF.
The team consists of professionals from various disciplines including doctors, psychologists and various therapists. The attorney would then work with experts who will constitute a medico-legal team, whose main responsibility would be to establish the extent of the injury as well as suffering and disability that may have been caused by the motor vehicle accident (MVA). It is from this point where the work of the educational psychologist plays a significant role of conducting neuropsychological assessments.
2.8.2 Valuation of a claim
In valuation of a claim approximate monetary loss of earnings is determined in relation to the extent of injury. The purpose of assessment in this instance is to assess the extent of pain, suffering, loss and the need for care. Hence a team of specialists is appointed to make sure that everything is done to claim for every loss and expense incurred, including future loss of earnings. The TBI survivor who has sustained severe brain injury requires specialised care from family and relatives. Although many severely brain injured children may not be wheelchairdependent, other items such as specialised educational equipment such as computers and therapeutic aids, which may wear out within the lifetime of the survivor, are considered in assessment, including replacements. During this process it is important for the team of experts to establish with the survivor and the
52
family, an appropriate and comprehensive plan that will fit their needs, rather than being forced to accept solutions which will not yield benefits to both the family and the survivor (Braithwaite, 1996:150).
It is important to note that the needs of the family, as caregivers of the survivor are important for the outcome of recovery. However, these needs may vary from different family circumstances. It is unfortunate that, generally, the severity of the injury often has a negative influence because of the strain that comes with its demands. On the other hand, the findings of researchers such as Nochi (as quoted by Rowlands, 2001:276) argue about the model of treatment used in TBI, that it still focuses on the brain injured person, a deficit approach where the survivor requires to be cured. As a result, the family is left with minimal knowledge and skills required to care for the survivor including a deprivation of their needs, a view that has already been mentioned by Mokhosi and Grieve earlier in this chapter. The Educational Psychologist can therefore fill an important role in attempting to bridge the gap between the medico-legal system and the family.
2.9 THE ROLE OF THE EDUCATIONAL PSYCHOLOGIST IN FORENSIC WORK
Personal injury lawsuit takes place when a person has suffered injury or loss. This process takes place through consultation with an attorney in an attempt to make a claim in a court of law. The attorney as an expert who co-ordinates the litigation process calls on psychologists and other experts to constitute a medico-legal team. This team provides technical or professional opinion that will assist with the envisaged outcome of the lawsuit. Thus the role of the psychologist in this instance will be as follows:
1. Confirm the existence of an injury; 2. Determine the effects of the injury; 3. Assess whether there is permanent disability; 4. Suggest remediation in relation to the survivors’ future functional capacity;
53
5. Following assessment, compare the condition of the survivor with an estimated quality of life had the injury not occurred (Blau, 1998:216). 6. Write a report. It is within this framework that the psychologist’s role is required to evaluate the psychological deficits and consequences of injury for litigation on behalf of the family, within the medico-legal team. The psychologist is called upon as an expert to render a specialised service of conducting an assessment of the injury, so as to provide expert opinion to the medico-legal team to be presented in court for litigation. It is in this regard where the psychologist as a professional, is supposed to assume ethical responsibility during the process of medico-legal assessment, to render an honest, impartial, expert opinion within the ethical and contextual framework of the psychological profession.
Psychologists who perform forensic functions, such as assessments, interviews, consultations writing of reports and expert testimony, must comply with all other provisions of this ethics code of psychologists by the Health Professions Council of South Africa (HPCSA) (2002) and Forensic Psychology Speciality Guidelines by Blau (1998:534-557). Most notably, an outline of a specific section of the principles which I believe as a researcher and emerging educational psychologist have a direct bearing on my roles and responsibilities in forensic work based on the HPCSA code of practice and the Forensic Psychology Speciality Guidelines by Blau, is suggested below:
(a)
Psychologists’ forensic assessments, recommendations and reports are based on information and techniques (including personal interviews of the individual, when appropriate) sufficient to provide appropriate substantiation for their findings.
(b)
Except as noted in (c) below, psychologists provide written or oral forensic reports or testimony of the psychological characteristics of an individual only after they have conducted an examination of the individual adequate to support their statements or conclusions.
54
(c)
When, despite reasonable efforts, such an examination is not feasible, psychologists clarify the impact of their limited information on the reliability and validity of their reports and testimony, and they appropriately limit the nature and extent of their conclusions or recommendations.
Role clarification is another important factor in forensic work. It is common practice for psychologists to avoid performing multiple and potentially conflicting roles in forensic matters. In circumstances where psychologists are called on to serve in more than one role in a legal proceeding, for example, as consultant or expert for one party or for the court and as an expert witness – clarification of role expectations is important (Blau, 1999:519). The extent of role clarification requires to be established in advance in order to avoid circumstances that may compromise ethical responsibilities of confidentiality. As a result, this approach enables psychologists to be aware of the occasionally competing demands placed upon them by the requirements of the court system and additional demands such as the need for counselling of the family in trauma. As an attempt to resolve these conflicts, it is important for psychologists to make their commitment to the ethics code known to the medico-legal team, and to take steps to resolve the conflict in a reasonable and amicable manner with the fullest adherence to the ethics code (Blau, 1998:555-556), such as recommending the inclusion of a counselling psychologist in the team to address the gaps that exist in the litigation process.
2.9.1 The role of the educational psychologist in TBI intervention
The long-term effects of TBI on the survivor and on family functioning, suggests that the intervention process should focus on family distress according to Nabors et al, (2002:1039). Broadly speaking, this view encompasses all the levels of intervention. In retrospect, the intervention process begins from the initial phase of the accident, through to hospital admission and treatment to discharge. This includes the litigation process that suggests the need for neuropsychological assessment, rehabilitation, and referral of the family to a support group to facilitate appropriate adjustment.
55
2.9.2 The process of neuropsychological assessment
The impact of TBI can result in the experience of various impairments which may include attention, memory, and dysfunction of the executive domains, affecting information processing speed. Most frequently, these deficits tend to have a significant impact along the path to recovery, affecting the TBI survivor scholastically, vocationally as well as everyday functioning in the natural environment of the home and community. It is against this background that conducting neuropsychological assessments for litigation are important, because they play a significant role in the assistance of the determination of the extent of the injury.
In this study, the discussion of the process of neuropsychological assessment will be limited to two settings, namely, outpatient assessment and inpatient assessment. In the presentation, an examination of the construction and significance
of
the
use
of
standardised
tests,
functional
assessment,
developmental factors, scholastic achievement, and intervening variables will be discussed. However, I will refrain from suggesting assessment batteries for neurological assessment because I believe this may be prescriptive and limiting. Since most of the literature that has been used is not South African literature thus the uniqueness of our South African context has been considered. The process of constructing a neuropsychological assessment is based on the ecological approach of Power, McGoey, Tuesday, Heathfield, and Blum (1999: 251). This approach has been chosen because it relates to the theoretical assumption of this study, namely, the systemic approach.
The choice of this approach resonates with the views of Obrzut and Boliek (1991: 129) which suggest that while the traditional neurological assessment approach is often based on a fixed battery approach of standard set of test procedures, other approaches can be considered to allow for more flexibility, depending on the purpose of the assessment.
56
2.9.3 Constructing neuropsychological assessments
The general approaches to conducting neuropsychological assessments as suggested by Obrzut and Boliek (1991:132) include eclectic test batteries, qualitative approaches, process-oriented approaches and special measure approaches.
Most
notably,
Obrzut
and
Boliek
emphasise
that
a
neuropsychological battery that is comprehensive, facilitates the identification of most skill deficits that occur after TBI. In addition, they further suggest an example of elements that comprise an eclectic assessment, and suggest that
(i)
it should include components from the paediatric neurological examination;
(ii)
neuropsychological measures should be taken
(iii)
tasks should be added that vary according to age and development
(iv)
based on the paediatric neurological exam, basic neurological functioning such as tactile discrimination, auditory discrimination, visual acuity should be checked
(v)
it must Include examination of various cerebellar functions and peripheral motor functions, such as gait, posture, muscle tone, strength, resistance, reflex, fine motor control, and dexterity.
(vi)
a full assessment should include components such as motor, sensoryperception, spatial-perception, memory (verbal/ non-verbal) as well as (long- and short-term). In language receptive and expressive abilities including cognitive functioning need to be examined as well.
In addition to the given elements they suggest examples of varied tasks that may be performed in an eclectic assessment such as, the Purdue Pegboard, Symbol Digit Modalities Test, Visual Organisation Test, Benton Visual Retention Test, Colour Naming, Memory for unrelated Sentences, Peabody Picture Vocabulary Test, Raven’s Coloured Matrices, and the Wechsler Intelligence Scale for Children-Revised (WISC-R). Careful selection of various assessment measures according to Obrzut and Boliek (1991:132) and Silver (1999:973), allows the
57
assessment process to establish the TBI survivor’s strengths and weaknesses across the domains of information processing systematically and efficiently. 2.9.4 The composition of a comprehensive children’s neurological battery Melamed and Wozniak (1998:73) provide an outline of a comprehensive children’s battery and makes note of four important issues that requires consideration when a comprehensive assessment battery is compiled. The suggested relevant issues are namely, (i) developmental factors - the instruments used need be sensitive to developmental changes, (ii) purpose - it has been noted that assessment with children has to be based on a specific purpose and outcome; for instance, remediation, cognitive rehabilitation or medico-legal purpose; (iii) duration - the duration for assessment with children requires to be appropriate to their capability to perform the tasks for a specified period; for instance, especially with younger children its important to have an assessment with a few interspersed breaks in between, where sessions are scheduled during the time of the day such that the child is able to perform intellectual tasks (iv) individual approach - it has been noted that although the elements of the children’s’ battery are basically the same; its important to compile the test battery according to the functional level and response limitations of the individual child. And the chosen assessment battery has to be within the widely accepted quality of academically measures of pertinent skills. The use of common educational and Psychological tests is also recommended, to allow for a description of neuropsychological assets of the child in a way that is understandable to the school environment. Hence, Melamed and Wozniak (1998:74-5) suggest the elements of a comprehensive child’s battery below:
58
TABLE 2.3: A comprehensive neuropsychological battery for children (as described by Melamed & Wozniak, 1998: 74-5) ABILITIES
TYPES OF TESTS
Cognitive
WISC-R/ WISC-lll/ WAIS-R
ability
Raven’s Coloured progressive Matrices/ Bock designs Raven’s Standard Matrices
Attention/
Knox’s Cube Test
Concentration Trail Making A,B Seashore Rhythm Test (Reitan & Wolfson, 1985) WISC-R/ WISC-III Freedom from Distractibility Continuous Performance Test (many versions available) Token Test for Children (response pattern) Language
Fullerton language Test for Adolescents
Functions
Token Test for Children Comprehensive Receptive and Expressive Vocabulary Test (CREVT) Test of Word Finding (TWF) Expressive Receptive One Word Picture Vocabulary Test Wepman Auditory Series Multilingual Aphasia Examination Schum et al, 1989 McCarthy Scales (selected tests)
Visual
Bender Gestalt
Perceptual/
Developmental Test of Visual Motor Integration (VMI)
Visual Motor
Motor-Free Visual Perception Test Test of Visual Motor Integration (TVMI) Kent Visual Perceptual Test Jordan Left-Right Reversal Test Test of Visual Perceptual Skills Bieger Test of Visual Discrimination (Bieger, 1982) McCarthy Scales (Selected Tests)
Executive
Category Test/ Intermediate Category Book Test
Functions
Children’s Category Test
59
Wisconsin Card Sorting Test Porteus Mazes WISC-R/ WISC-III Mazes Tower of Hanoi/ London Verbal Fluency Measures ( oral and written) Stroop Test Memory
Wechsler Memory Scale-Revised (older adolescents) Wepman Visual series McCarthy Scales (selected memory subtests) Learning Efficiency Test-II Children’s Auditory Verbal Learning Test Selective Reminding Test (Clodfelter et al.,1987) Wide Range Assessment of Memory and Learning (WRAML) Test of Memory and Learning (TOMAL)
Motor Skills
Finger Oscillation Grooved Pegboard Lateral Dominance Examination Tactile
Perceptual
Elements
of
Halstead-Reitan
Sensory
Perceptual Exam Academic Achievement - Various standardised instruments including diagnostic reading, math and written expression tests.
2.9.5
A constructivist’s approach to conducting neuropsychological assessments
Although to a large extent, neurological assessments for litigation are aimed at the establishment of possible impairments and deficits caused by the accident (MVA) one other important factor that could impact on the outcome of the assessment process negatively or positively would probably be the theoretical perspective of the educational psychologist who performs the assessment. For instance, Donald et al, (2002:117) assert that, conducting an assessment from a constructivist view lays
emphasis
on
the
purpose
of
assessment,
the
perception
and
conceptualisation of the assessment score as well as the strengths and
60
weaknesses that are demonstrated by the outcomes of the performance scores. Donald et al (2002:89) affirm that this approach to assessment enables the educational psychologist to view the child’s performance from an interactive, integrative and systemic perspective that does not view the child as made up of separate areas which have little to do with one another.
This approach is contrary to the normative assessment approach that is argued by Donald et al, (2002:119) that compares children with one another in terms of norms and standards only, with a purpose to sort children out and distribute them according to their capabilities for categorisation and placement. A view that is contrary
to
the
principles
of
inclusive
education.
The
purpose
of
neuropsychological assessment includes purposes such as the litigation process, educational placement and rehabilitative planning. In this regard the theoretical perspective of the examining professional plays a very crucial role. Most significantly, this implies that the educational psychologist who conducts the assessment requires balancing both the diagnostic, curriculum based and dynamic assessment models to devise a report that will address the needs of the TBI survivor more comprehensively.
2.9.6 Writing a neuropsychological report
Writing a neuropsychological report forms one of the most important stages of the medico-legal process because it consolidates all the activities of the educational psychologist and presents evidence of her/his work in print. Weiner and Wettstein (1993:360) explain that writing a good report requires a great deal of thought and organisation. They suggest that this includes, stating the legal issue, listing the materials that have been reviewed, making recommendations and finally explaining how you reached your conclusion. The following outline taken from Weiner and Wettstein (1993:300) outlines the process of writing a forensic report as requiring the following:
(i) know the legal question and the applicable legal standard
61
(ii) before writing the report, review all records and other materials used during the evaluation (iii) prepare an outline prior to writing the report (iv) define psychological and psychiatric terminology (v) avoid ultimate issue conclusions (vi) support the opinion with specific data from the case (vii) avoid including extraneous material or conclusions.
To write a comprehensive report the educational psychologist is assumed to be an expert in this field. The psychologist should be ready to provide expert testimony in court should the need arise. Wrightsman, Nietzel and Fortune (1998:35) describe an expert witness as someone who possesses special knowledge about a subject that an average juror does not have. Thus, the participation of the educational psychologist in court as expert witness will allow him or her child advocate (Weiner & Wettstein, 1993:356) to bring to the court’s attention the particular problems and needs of the child. In addition, as expert witness the educational psychologist represents a profession that stands for objectivity and accuracy in its procedures. As a result, they have to report all their conclusions whether they favour the side that pays them or not, (Wrightsman et al. 1998:44). This participation allows the court to have a broad base of data to work from, which ensures that the decisions that are taken work to the best advantage of the child, given the circumstances under discussion.
2.10 SUMMARY
In this chapter a literature review was presented. A theoretical framework based on systems theory was presented. A basic overview of TBI, composition of the human brain and its functions and various forms of brain injury has been presented. A discussion on recovery after TBI, TBI rehabilitation models and TBI prevention has been made. The effects of TBI on the survivor and family, TBI compensation for pain, loss and suffering and the role of the educational psychologist in forensic work has been presented.
62
An attempt was made to establish a theoretical framework based on the various systems and how they relate to each other, from the physical and neurological systems associates with the brain, to the functioning of the family of the survivor as a unit and the educational psychologist working within the medico-legal team. In the next chapter the research design will be presented.
63
CHAPTER THREE
RESEARCH DESIGN
3.1
INTRODUCTION
Research design is a plan or blueprint of how the researcher intends conducting the research. It can described as a “descriptor of the way a study is developed and presented to its readership” (Henning et al., 2004:32) and should be “tailored to address different kinds of questions” (Mouton, 2000:57 in Henning et al. 2004:30). Henning et al. state that there must be “design logic” which shows “the coherence of epistemology, research questions and methods of inquiry” (2004:141).
Thus, it is against this background that I describe how this study was constituted, how it has developed and how it unfolded. The context of the study will be presented, including an outline of the chosen methodology, its relevance to the study and how the participants were chosen. A description of the data collection process is made, including the data management process. The chosen data analysis techniques will be presented and lastly, Guba’s model, adapted by Krefting (as quoted in Molefe, 1999:46) of trustworthiness, as applied to this study, will be discussed.
3.2
QUALITATIVE RESEARCH APPROACH
Qualitative research is described by Fick (in Nassar, 2001:91) as a “process of study based on a particular context, which focuses on a specific unit of analysis, using a variety of methods”. The theoretical framework emerging from Chapter 2 provided a “lens” (Merriam, 1998:45) through which to examine the relationship between the various systems within which the TBI survivor interacts. Merriam et
64
al, (2002:25), explain that the purpose of a qualitative research is to describe a phenomenon as it is, and often this tends to rely on single settings with relatively small samples, from which in-depth information is collected. Henning et al. (2004:3) concur with this view and highlight the following:
In qualitative research we want to find out not only what happens but also how it happens and, importantly, why it happens the way it does. We do not just look at actions of human beings, but we try to find out how they represent their feelings and thoughts.
In this study, the qualitative research paradigm has been chosen as an appropriate and relevant research approach that will assist the researcher in obtaining “thick description” (Merriam, 1998:151) of the participating family’s recollections of the motor vehicle accident experience of their child, that led to traumatic brain injury, from their own natural setting. The researcher has chosen this approach in relation to the key characteristics of qualitative researchers as stipulated by Merriam (in Nassar, 2001:92), below: Qualitative researchers embody six key characteristics, which include,
(i)
A concern with primarily, the process rather than with outcomes or products.
(ii)
An interest in meaning, on how people make sense of their lives, experiences and how they structure their world.
(iii)
The researcher is the primary instrument for data collection and analysis. Data is mediated through this human instrument rather than through inventories, questionnaires or machines.
(iv)
The researcher uses the fieldwork method for gathering of data. The researcher physically goes to the people, setting, sites or institution to observe or record behaviour in its natural setting.
(v)
Their work is descriptive in that the researcher is interested in the process, meaning and understanding gained through words and pictures.
65
(vi)
The researcher uses an inductive approach to develop abstractions, concepts, hypotheses and theories from empirical details gained through data collection and analysis.
This chosen research paradigm forms the basis of the approach that will be used for this study. An adoption of this paradigm will assist the researcher to align her interactions to the outlined guiding principles so as to use the appropriate methods and techniques with the research participants during the data gathering process.
3.2.1 Case study design
This qualitative research study took the form of a case study of a chosen family unit and this design allowed for an in-depth understanding of a particular situation and meaning for those involved, with the researcher’s interest being in the “process rather than the outcome, in discovery rather than confirmation” (Merriam, 1998:19). Mulenga (in Nassar, 2001:153-154) views a case study research as a “structured and focused method” which primarily responds to research questions such as “why” and “how”; and it is also viewed as a method which offers a flexible, yet integrated framework for holistic examination of a phenomenon in its natural state. Although Mulengas’ describes the case study research as a structured method, he is concerned about the developing trends of research, that attempt to move away from considering a case study exclusively within the qualitative research context, which aim at locating it to a more expansive view as an “adaptive research structure” that can accommodate both qualitative and quantitative perspectives, techniques and standards.
However, other proponents of case study research such as (Yin, 1984:23) describe a case study as an investigation of a “contemporary phenomenon within its real-life context” which may be a set of people “bounded by parameters and that shows a specific dynamic and relevance, revealing information that can be captured within these boundaries” (Henning et al. 2004:32). Henning et al. (2004:40) suggest that a researcher using specific questions, should set boundaries which would define ‘a case’ by identifying the people, the unit of
66
analysis, the phenomenon to be studied, the time involved, the activities and events to be included and the research methods to be used. The “particularistic” case study design (Merriam, 1998:27) was considered appropriate and relevant for my study because I believe it will afford me an opportunity to make an in-depth exploration of the experiences of a specific family about the TBI of their child. The outcome of the exploration would then help me to provide a thick description of the experience of the family. In this instance, the approach to my “particularistic case study” (Merriam,1998:29) is qualitative, emanating from a constructivist and systemic standpoint, where the participants in a “bounded system” (Smith, 1978 in Merriam, 1998:27) are viewed as active agents who influence each other within their environment, in relation to their own development. My case study thus focuses on a particular situation, and “the case itself is important for what it reveals about the phenomenon” by “concentrating attention on the way particular groups of people confront specific problems” (Shaw, 1978 in Merriam, 1998:29). Thus, the phenomenon to be examined is the relationship between the various systems within which the TBI survivor interacts and the unit of analysis will be the experience of TBI by the family within interactive and supportive systems. Hence, as a researcher, I will not claim to have knowledge and understanding of the phenomenon or the respondents’ experiences, but will rely on data gathered from the respondents themselves, and then to interpret the data in an attempt to address the research question.
3.2.2 Research participants The participants of this “particularistic case study” (Merriam, 1998:29) include the TBI child and the family as a unit, as well as two educators from the child’s school The family is a nuclear family of three, the mother and two children, a 10-year-old boy, who is the TBI child as well as the sibling - a six-year-old girl. Unfortunately, because of the demands placed upon the mother as caregiver, the younger sibling has been taken to the maternal grandmother in a rural area for care.
67
The criteria used to select this participating family were based on three factors: namely the age of the TBI child, the chronological recovery period, and his being reintegrated into the same school. Firstly, the TBI child participating in this study was required to be between the ages of 9 and 13, to be interviewed independently of the mother, albeit with her consent, as well as the child’s assent.
Secondly, the child should have sustained the injury between 18 and 24 months previously, and so having been given time to stabilise in the recovery process and also time to have worked through the assessment and litigation processes. The purpose of using a specific chronological recovery period is in line with the claims of Oddy et al. (1996:83) that recovery from head injury is faster in the first few years compared to the subsequent years after the injury, although recovery still progresses.
In addition, the other objective was to capture the visible difficulties and barriers to learning the TBI survivor experiences within the school environment, before s/he learns adaptive coping strategies, as these may complicate the actual difficulties the research aims to capture. Thirdly, s/he should have been reintegrated to the same school, thus allowing for pre and post – injury scholastic functioning to be compared.
The choice of the two educators from the school of the TBI survivor was aimed at gathering data regarding the child’s pre-and post accident scholastic performance. This determines the effect of TBI on the survivor, as the child re-enters the education system and copes with the demands within a teaching and learning environment.
The purpose of selecting one family unit is to encapsulate a relevant respondent to the research question in relation to the wider universe and not to “represent the universe directly”, as Mason (2002:17) suggests. Every family is unique and each reacts differently to different and similar challenges, and this study attempted to understand how a particular “group of people confront specific problems” (Shaw, 1978 in Merriam, 1998:29).
68
3.3
THE RESEARCH METHODOLOGY
A proposal was written outlining my selected topic of interest, based on work experience and exposure to families with children who have sustained TBI. Following approval of the proposal, I continued my literature review in an attempt to establish the most relevant areas in which my topic was researchable. Fortunately, I discovered that not much research has been conducted on family experience of TBI and consequently realised the value of choosing this topic of study and gather rich data using a variety of collection tools.
3.4
DATA COLLECTION
A detailed account of data collection, its management and the analysis process will be outlined below
3.4.1 Gaining entry to the research process
The process of data collection began when I wrote the first letter to the Gauteng Department of Education, requesting permission to conduct research at one of the schools, which are not within the operational area of the district in which I worked. The second letter was written to the school principal and the two educators, one of whom taught him at the time of the research. The TBI child was in Grade three at the time. I telephoned the school for the appointment with the principal to state my case, giving an assurance that I would not disrupt the smooth running of the school’s daily programme. I was allowed entry to the school and then tabled my purpose of research. The principal called the two educators to the meeting, after I had explained who I was, where I was studying, my area of interest and the purpose of the research.
69
A family suiting the required profile was selected and letters requesting written consent were forwarded to them. These elicited positive responses. I indicated that I would adhere to the professional ethics as a researcher, laid out in the University of Johannesburg, Ethics Committee guidelines (2005). I undertook to maintain the privacy of participants, and respect their confidentiality and anonymity. Should they feel uncomfortable with the process, they were told they would have the right to withdraw without reprisal. They expressed interest in sharing the outcomes of the research.
I was given permission to proceed with my study, however, since it was after school, we agreed to meet the following week for the interviews, after the educators indicated the day and time of availability. The process of gaining entry is confirmed by Balley (1995:51), usually involving a process that has to be negotiated and renegotiated throughout the research process.
3.4.2 Interviews
Merriam (1998) explains that interviewing tends to be the best technique to use when conducting intensive case studies of a few selected individuals especially if the researcher wishes to “move beyond the surface talk to a rich discussion of thoughts and feelings” (Maykut & Morehouse, 1994:80). It was planned that data would be collected by means of four one-on-one semi-structured interviews, eventually one being conducted with the mother of the TBI survivor and two with the educators. The fourth, planned to be held with the TBI survivor, was not a success. It had been intended to establish the effects of TBI on the survivor and the family and to determine his functioning, post-accident. The semi-structured interview (Merriam, 1998:72-74) was chosen as the best type of interview in that this ensures that particular questions are defined beforehand, giving a basic framework for the interview, yet there is flexibility for open-ended questions and probing questions (Merriam, 1998:80) based on the response of the participant during the interview leading to further exploration.
70
However, an unstructured individual interview was conducted with the mother of the survivor in order to obtain a view of her personal her experience regarding the TBI of her son. She was interviewed in the privacy of her home while her son was at school. The interview, which lasted for about two hours, was conducted in Northern Sotho, although codes were switched here and there, but the whole interview process was in the language that was most comfortable, particularly for the participant. The main question of the interview was, “Can you please take me through the story of your son’s injury, do you still remember what happened?” As a researcher my obligation was to facilitate and encourage the participant to tell her own story and only asked occasional questions for clarification. I only asked specific questions where there was a need. The gathered data included when the accident happened, where it happened, her reaction to the news of the accident, issues that related to hospital treatment and care, the extent of injury, changes that she experienced about her son’s emotional, scholastic performance, daytoday functioning, social competence, the process of re-entry back to school and the litigation process.
The other three interviews were conducted at school, at a time that was convenient to both educators and the child. I had telephoned the school a day before the agreed date, to establish if the respondents had made provision for the interview. The response was positive. The following day I went to the school. Fortunately, the rapport had already been established with the principal as well as the two educators. I was taken to the Grade one educator’s classroom, as she had taught the TBI learner before the accident. Learners from her classroom had already left but were still within the school grounds, waiting for transport to take them home. I requested permission to use an audio-tape to record the interview as it was important to establish what the respondents are experiencing when working with a TBI survivor.
The interviews conducted in English, were semi-structured, so informal structured questions were prepared in an attempt to elicit information about the TBI survivor’s pre and post-accident scholastic performance. The interview question for the educators was, “Can you please take me through the story of Bonga’s accident
71
and explain how it has affected his present scholastic functioning as compared to his functioning pre-accident?” This prompted the educator to share her recollections of what she knew about the TBI learner before the accident. She did that with vigour and passion, and I could perceive that she was passionate about her work and knew the learner very well. During the process I asked for clarification on issues that required more information. The first educator gave an extensive account in her response because she had taught Bonga pre-accident and she was one of the people who saw him immediately after the accident occurred since the accident actually took place in the morning outside the school yard when Bonga was attempting to cross the street in order to get to the school gate. The educator seemed to know Bonga very well because she was one of the team of learning support educators of the school. The interview with first educator took about twenty minutes.
The second interview was a bit shorter lasting only ten minutes; however, the educator, who teaches Bonga at present, did not know him pre-accident. I asked the second educator to share with me her recollections of the TBI survivor, since he had come into her class. She then responded by relating her experiences. I probed issues that required clarification. She also seemed very frustrated about his scholastic functioning post-accident and seemed at a loss of knowing what to do to help him succeed scholastically.
Lastly, I then went to fetch Bonga for the third interview from the playgrounds as he was waiting for transport to go home. Since we had already established rapport, we went to a quiet place for our discussion. I then asked him if we could talk, he agreed. I spoke to him in Northern Sotho. I then asked him if he could relate the story of the accident. He kept quiet for a while, I then asked him for the second time and paused, but still he could not respond. After another pause, I then told him that it was fine if he did not feel like talking about it. I then took him back to his friends, without having conducted the interview.
The interview with the mother was translated from Northern Sotho to English and transcribed simultaneously from the audio tapes by the researcher. The audio
72
taped collected data from the educator interviews was also transcribed. All the transcriptions were stored in one file, with a table of contents and indexes which separated each interview accordingly. The collected data were classified according to categories and stored for easy access. The data analysis procedure was finalised after all the transcriptions of the interviews from the family and educators had been completed.
3.4.3 Observation Observation is explained by Merriam (1998:95) as a “research tool” which assists the researcher to capture data that can be used in conjunction with data collected from interviews and other documents during data analysis to substantiate the findings. In this study, data has been collected by means of participant observation in which the experience Henning, et al. (2004:85) finds very valuable as it allows the researcher to construct knowledge in a similar manner to which the participants are experiencing it.
Being a participant observer led me to record my observations, thoughts and understandings as they occurred through the research process. Although we had established some rapport with the participants, it was not very easy to remain as a researcher and participant at the same time,” full participation is not possible” Merriam (1998:103). I made very brief notes of my observations in front of the participants in order not to disrupt the flow of the interview process. Immediately after interacting with the participants I reflected to capture my thoughts, reactions.
3.5 DATA ANALYSIS PROCEDURE Data analysis is a dynamic “process of making sense out of the data” (Merriam, 1998:178) to understand more about a phenomenon; starting with the reading of the first piece of literature, the field notes from the first observation, the first words transcribed from an interview or the first document studied. Conducting qualitative research is a process aimed at seeking to understand the world through people’s
73
words and actions and through participant’s experience. In this “particularistic” case study, multiple sources of data gathered from my observations and field notes, family interviews, educator interviews, hospital records, psychological reports and letters from the school were brought together to conduct case study analysis to develop a comprehensive picture of family experience the TBI of their child within a system of intervention and support.
The analysis procedure will be presented chronologically and thematically in an attempt to manage the case record systematically. Firstly, as a way of “working the data” according to Henning et al (2004:104), I started by reading all the data that I had collected including the transcribed interviews. Then I read all the documents in order to establish a sense of the broader picture of the collected data. As I was reading, I made notes in the margin of all the documents using the “open coding process” suggested by Henning et al (2004:106). I constantly revisited my field notes and transcribed interviews with the research question in mind and began to segment the data into units of meaning using the content analysis method, “an important tool and template”, termed by Patton (2000:450) and Henning et al (2004:109), that helps the researcher consolidate data to create a new whole. I then awarded codes to the different units of meaning and grouped the related codes together in clusters. As I was guided by the data, I clustered similar units of data together and gave the clusters collective names based on my background knowledge of “social science” (Henning et al., 2004:105).
The clustered units began to show emerging categories leading to themes that were ultimately used as key categories discussed in the study in Chapter 4. The clustered segments of data and the emerging categories including the key themes for discussion were then displayed in matrices such as Table 4.1 (Patton 2000:450).
In this study an interpretivist paradigm has been adopted, which maintains that reality is subjective and constructed by human beings in relation to each other and reflects the way they make sense of their interaction with the world (Bettis & Gregson 2001:10). This view implies that, as a researcher, I will attempt to
74
understand the phenomenon of the participating family living with TBI and engage with them, in an attempt to understand how they make meaning of their world. Thus, in using the interpretivist paradigm, this enabled me to interpret the findings which could then be used to inform practice by providing recommendations for the systems within which a TBI surviving child interacts.
In addition, document analysis was conducted, using skills and intuition to find and interpret data from the documents by thinking creatively about the problem and asking a variety of searching questions related to the research problem (Merriam, 1998:120-121). Henning, et al. (2004:99) state that documents, even hand-written documents, are a valuable source of information. In this study, data was obtained from documented texts from a team of psychologists working with TBI cases, such as medical reports (Appendix J), neurological (Appendix K) and psychological reports (Appendices L, M). Documents also included letters from the school (Appendices N, O). My observational notes have been consolidated with all other written data for analysis and comparison, in an attempt to answer the research question.
Other supporting documents such as hospital records and letters from the school were placed in a file which had indexes for classification of the documents. Psychological reports from various specialists who had assessed Bonga, the TBI survivor were filed alphabetically and classified according to the categories of specialists for easy access and retrieval. Analysis of data mined from these documents enabled the researcher to write a thick rich description of the case in an attempt to address the research question.
3.6 ETHICAL CONSIDERATIONS
As a researcher, I have been aware of my values and those of the participants. Although I may have struggled with difficulty to distance myself from sharing their feelings, impressions, ideals and information during the research process (Balley, 1995:72), I have managed to retain objectivity. I have not compromised my ethical
75
obligation to respect them as constructors of their own social and cultural context. Secondly, I had no privilege to claim authoritative knowledge to represent their perspective of their world.
It is important to highlight that the selected participants may not have fully responded to the research question and as a result, unknowingly withheld information. Their right to dignity had to be upheld and the following ethical guidelines have been adhered to:
Participants were informed that participating in the research was voluntary; they had a right to withdraw from the research without reprisal at any time whenever they felt uncomfortable.
A commitment to inform the participants about the research process including their right to choose to give consent to participate in the research was presented. The principle of privacy, which is commitment to confidentiality and anonymity of the participants, has been consistently protected. The data was kept locked for the duration of the study and after the study the data pertaining to this child will be destroyed in an attempt to protect the family’s privacy.
The principle of trust, which implies that the participants will not be deceived or betrayed in the research process or after the research, has been adhered to.
The principle of safety in participation, especially where the safety of the TBI survivor should not be put at risk or harm of any kind has been taken into
consideration.
As
an
educational
psychologist
the
above
considerations are in line with to Psychologists code of Ethics (sections 27(e) and 11.2.d.(iii)) that as a psychologist I may not disclose clients or research participants confidential information, but have to protect them from harm and consider their preferences and best interests.
Thus, the information and details obtained from and about the participants of the study will remain confidential and will not be used without their consent. The research was conducted throughout with adherence to ethical guidelines outlined in a draft document for the Ethics Committee of the University, in particular paying
76
attention to informed consent, confidentiality and anonymity of participants, assuring them that they may discontinue participation at any time without having to provide a reason and without any retribution. This was closely adhered to throughout the process of collecting, analysing data and writing up the research report. They would be informed of the nature of the research beforehand.
3.7 TRUSTWORTHINESS OF THE STUDY
The discussion that relates to the trustworthiness of this study, have been outlined based on the adapted model by Guba (Krefting, in Molefe, 1999:46). The presentation comprises the qualitative perspective only; the quantitative perspective was not presented since it falls beyond the scope of this study. However a presentation of the discussion has been as follows:
TABLE 3.1 Model of Trustworthiness (adapted from Guba) CRITERION
QUALITATIVE
Truth Value
Credibility
Applicability
Transferability
Consistency
Dependability
Neutrality
Confirmability
3.7.1 Truth value (Credibility)
In this study, information from the participants was obtained through interviews, where the interview process has been conducted in a semi-structured way. An attempt was made to create a comfortable, flexible enabling atmosphere for the participants to describe recollections of their phenomenon in a more authentic way without any pressure. In this instance, the way the interview has been designed and conducted confirms that the study meets the truth value of the research. Mason (2002:65) adds to this view and outlines that conducting a qualitative interview gives a “contextual account of a recollection of experiences” contrary to
77
the quantitative approach, which may provide a superficial analysis of data that may lead to surface comparability. Member checking, whereby the narrative would be returned to the participants for verification, was not undertaken owing to the lapse of time following the research and a wish on behalf of the researcher not to ‘open old wounds’ by reminding the mother of the trauma.
3.7.2 Applicability (Transferability)
Henning et al. (2004:149) indicate that research needs to be directed at taking action for human resource development, capacity building and social redress. This perspective suggests that the social world would benefit from the outcomes of the research projects that are often conducted although the findings may be applicable on a minimal scale. The findings of this study will be discussed in Chapter 4. Marshall and Rossman (1999:197) argue that the findings of a qualitative study may not be transferred nor generalised to other settings because every context is unique. Mason (2002:149) affirms that if the researcher’s sample is not empirically representative of a wider population, that the researcher may not make claims which are suggestive of the contrary. I have an understanding that the purpose and outcomes of this study were not intended to be generalised to any setting, but were aimed at seeking to understand what a particular family was experiencing in its own unique circumstance and context. This may imply that applicability in this instance would possibly be the research methods and design. However, this study could make a contribution to the body of knowledge around TBI and the family experience and so inform and improve the practice of Educational Psychology in supporting such families.
3.7.3 Consistency (Dependability)
Consistency or dependability is explained by Marshall and Rossman (2002:146) as an act in which a researcher attempts to account for the changing conditions that may occur in the phenomenon of the study. For ensuring dependability, according to Henning et al., (2004:144) and Merriam (1998:172), a researcher requires to present an audit trail, describing raw data, analysis notes, and
78
preliminary information, such as clustering, categorising and emerging themes. They believe that a succinct articulation of procedures will render the process credible, and will put the study in a position that will allow the researcher to move backwards and forwards with ease in the description of the research process.
3.7.4 Triangulation
In this study to enhance triangulation, a detailed description of the way data has been collected and analysed has been presented and I have also tried to create an “audit trail” (Merriam, 1998:207). Triangulation is defined by Mason (2002:190) as the use of a combination of methods to measure the same phenomenon from different positions. In conducting this study, I used different methods of collecting data, in order to obtain a thick, rich description of the data that will validate or attempt to address the research question. The participating family has been interviewed, field notes were written, and Hospital records were examined, including medico-legal reports. It is from the examination of these multiple sources of data where the act of triangulation was conducted, to collaborate, elaborate and illuminate the envisaged outcomes that pertain to the research question. This approach to conducting a qualitative study is affirmed by Marshall and Rossman (1995:145) who claim that a study that has been designed in such a way that multiple informants participate or consists of more than one data gathering method, has a potential that can greatly strengthen its usefulness to other settings.
3.8
SUMMARY
In this chapter, the research design was outlined. Subsections such as the background that led to the study, a description of qualitative research and the research design of a “particularistic” case study were discussed. A description of the data collection methods of observation, interviews and documents was followed by a discussion of how data was analysed. Issues of the trustworthiness of the study were discussed and lastly, ethical considerations were presented.
79
In the next chapter, the data is analysed, interpreted and presented, and the findings will be discussed.
80
CHAPTER FOUR
DATA ANALYSIS, DISCUSSION AND INTERPRETATION OF THE FINDINGS
4.1
INTRODUCTION
This section provides an analysis of the collected data that pertains to this study. Merriam (1998:198) views such analysis as a process of making sense of data, explaining that the process includes its consolidation, reduction and interpretation. In the process of data analysis attempts are made aimed at answering the research question, with the purpose to present a written report of outcomes of the research. Richard (in Patton, 2002:432) argues that the process of conducting a qualitative data analysis does not just involve writing a report, and making sense of the world. It further assists researchers to understand how they make sense of their relationship with the world. In addition, he further suggests that the data analysis process helps researchers to discover things about themselves as they attempt to discover issues about a particular phenomenon of interest. Patton (2000:480) highlights that the process of interpretation involves going beyond the descriptive data, through attaching significance to what was found, and aiming at making sense and drawing conclusions to extrapolate lessons.
As mentioned in the previous chapters, the unit of study is a family whose child has survived TBI. In this section, I will first give a detailed account of Bonga’s case background, secondly, an account of the data analysis procedure and finally a discussion and interpretation of the findings.
81
4.2
BONGA’S CASE BACKGROUND
When I was working at the support services unit of the Gauteng Department of Education, I became aware of Bonga’s situation and was motivated to investigate his problems further. Bonga lives in a single parent family setting with his widowed mother, Thandi2. He was involved in a motor vehicle accident in April 2001 at the age of 9 on his way to school. He sustained a traumatic head injury (Section 2.4) and physical injuries (Appendix L). It was reported (Appendix N) that he was unconscious for about a week and upon waking up he was confused and speaking in an uncoordinated way. The signs of recovery of function began in the middle of May. The motor vehicle accident left him disabled and incapacitated for many days.
He was hospitalised for three weeks and discharged using a wheelchair. He was also reported as incontinent on discharge from the hospital and required to be toilet trained like a baby. He continued with treatment as an outpatient of the hospital for about a year. Thandi‘s medico-legal battle began shortly after Bonga was discharged from the hospital. In accordance with the attorney’s instructions she then took Bonga to various specialists from the medico-legal team, such as the neurosurgeon, the educational psychologist and the industrial psychologist.
In his medical history, reports from (Appendices J, K, L,) indicated that the CT scan showed that there was haemorrhage in the brain resulting in a severe and significant head injury. In addition, minor chest injury, minor pelvic injury and a left hemiparesis (a paralysis of the left side of his body) were also reported. Other reports (Appendices J, K) indicated that while he was in hospital he received physiotherapy, occupational therapy and speech therapy. These therapies were extended way after the discharge period from hospital into a prolonged outpatient period. He also received medication such as Tegretol and Epanutin for his epilepsy.
2
Pseudonyms have been used to preserve anonymity
82
Bonga’s physical functioning has been adversely affected. Indications from assessments from occupational therapist in (Appendix K) suggest that, development and performance of fine subtle tasks from both his left leg and arm has been affected. The left side of his body is slightly uncoordinated and movements on the left are performed more slowly than their counterparts on the right. He cannot hop on the left leg, and when he runs there is a slight limp. He has a problem washing himself due to the slowness of the left arm and left leg. When he dresses himself he does it very slowly. However, he is able to feed himself.
As a result of the accident his educational progress has been affected (Appendix L), he experiences a shortfall in scholastic performance and achievement. Prior to the accident, Bonga had failed grade one, and during the repeat year, he was involved in the above mentioned motor vehicle accident in April, and as a result he then missed his grade one year again. The accident affected his cognitive functioning, his memory, concentration, attention, judgement, initiative and other higher mental functioning abilities (Appendices K, L, and M).
Bonga was almost ten-years-old in the year when his family was interviewed at their home (Appendix G). Thandi reported that she had two children, a boy and a girl by the name Bongiwe, who was six years old then. She mentioned during the interview, that her husband had died of illness a year after Bonga was involved in the car accident. She related that she was the owner of a hair salon when the TBI incidence occurred and that her husband was working in a coal-mine at Witbank, away from home, but used to return home at the end of the month.
My observations revealed that the family rented an apartment in one of the old blocks in the Johannesburg city centre, on the fifth floor. The lifts were not working, and going up and down the flight of stairs from work and school every day has been part of their routine. Living conditions in the apartment block were poor but Thandi had tried to make a home for her family, with the apartment having all the necessary basic items and furniture found in an ordinary township home. The apartment was also clean and tidy, revealing that she took pride in her
83
home, even though she was forced to live in such conditions. I saw that Thandi had painted the internal part of her bedroom door with blackboard paint. She explained that she used it for writing on as she tried to assist Bonga with his schoolwork. This demonstrated the interest that she took in her son’s schooling. Bonga’s re-entry into school had been facilitated by his caring grade one teacher who telephoned his mother requesting his return to school. At the same time his mother was advised by the attorney to send him to a special school for children with learning problems (Appendix I). This suggestion was based on the assessment reports from the various specialists of the medico-legal team. However, his mother took him back to his previous school as she felt she could rely on the support of the educators and Bonga would be more comfortable in a familiar environment.
Although Bonga was back at his old school, it seemed as though he was not coping well scholastically as before. Reports from his educators (Appendices N, O) indicate that his academic progress was very slow, as he was unable to cope with his work in class and was unable to work on his own. He was unable to remember what he had been told and he found difficulty in participating in sporting activities due to the leg that was injured in the accident. The difficulties that Bonga was experiencing were also evident in the educator interviews (Appendix H). They stated that before the accident he was an average learner, but now he was no longer an average child but he was very slow. He was also very demanding and needed one-on-one type of tuition. Socially, Bonga had settled into the routine of the school day, but according to a letter the class teacher, he seemed to withdraw and not participate in classroom discussions (Appendix 0). This behaviour was consistent with research on TBI which stated that such children tend to display poor judgement and social skills, with a result that they prefer the company of younger children. Bonga’s mother reported (Appendix G) that he very rarely wanted to play with his peers as he had in the past, as after the accident he felt more comfortable playing with much younger children.
84
Although his mother seemed to have accepted her son’s health status, it appeared as though she was battling to cope with the overall effects of TBI. This was evident during the interview that she was still experiencing much grief. From the interviews it was apparent that she had not been able to contend with the loss, frustration and trauma of the accident.
4.3 DATA ANALYSIS
The data analysis process involved continuously organising and refining units of data into meaningful related chunks in an attempt to make sense of them (Merriam, 1998:178). The data analysis process was conducted by analysing the content of the documents and then constantly comparing the themes that emerged in the various sources of data with each other. This analysis occurred in five stages. The first stage constituted reading all the collected data individually, with the research question in mind. The interpreted categories that emerged during the initial stage were reserved and written separately in the margins, to prevent their influence during this early stage of analysis.
The second stage involved open coding, where units of meaningful sentences of data were assigned codes. The third stage included chunking of sentence units that have been assigned similar codes. An overall concept that embodied the similar chunks was formed and a category that best explained the chunk based on similarities and differences between the concepts was allocated. The fourth stage became the identification of regular themes that consistently emerged, and the key features of these themes were recorded. Finally, the other collected documents, such as the letters from school, psychological reports, and hospital records, were analysed as supportive data through the constant comparative method to confirm or refute the authenticity of the identified key features of each theme.
4.4 THEMES WHICH EMERGED FROM THE INTERVIEWS WITH THANDI
85
These categories were conceptualised during all the stages of the data analysis process, to consolidate the key features. The matrix diagram presented below is aimed at giving a visual representation that demonstrates how I arrived at the themes that emerged from the interviews with Thandi.
Table 4.1 (a) Key categories and themes which emerged from interview with Thandi Identified phrases from the interview with Clustered Thandi
and Themes
coded categories
Thandi’s description of her reaction to the I cried-SH
Trauma
phone call she received about her son’s Scared-SH accident: - I screamed, I could not walk, I cried -SH - In hospital I was scared to look at him -SH
Grief
(as Thandi was talking she was crying) -GR Thandi’s description of her son in hospital: - He was unconscious; he could not talk, see Unconscious-LO nor respond when called. -LO
Could not talk for
- He could not talk for almost three weeks.
three weeks-LO
Loss
- He could not eat. -LO - After three weeks, he responded with a slow voice and he spoke very slowly. - He could not recognise his toys. -LO - He messed himself in bed -LO. A description of his physical features after hospitalisation:
Looses
- He looses balance -LO
LO
balance- Loss
- He does not walk well -LO - When he is asleep he keeps on turning - restless RE
86
- He wets his blankets when he is asleep LO Expression of pain by Thandi: - I was not able to talk -SH
Not able to talk- Grief, Loss,
- I just looked at him and cried -GR
LO
Frustration
- I was mad -FR
Cried-GR
Trauma
- It hurts me if he can’t play with other Mad-FR children -LO
Hurt-GR
Thandi’s language used: - I was not making it -FR
Not
- He was not making it -FR
(mother)-FR
- It was difficult, I could not do anything -FR
Nott
- I could see that his mind is gone -LO
(child)-FR
making
it Frustration
making
it
Bonga’s observable behaviour after TBI as described by his mother: - He does not clean up after making a Does not clean sandwich -FR
frustration
Up-FR
- He does not put his plate away after eating -FR - He leaves his school uniform on the floor after undressing after school -FR - He refuses to wash dishes, he says he is Refuses to wash tired -FR
dishes-FR
Identified cognitive behaviour after TBI: - He forgets -FR
Forgets-FR
- He is unable to read -LO
Unable to read- frustration
Loss
and
LO Socials skills
Does
not
- He does not want to play with other with children -LO
other
children-LO
- When there are visitors he interrupts Interrupts adults when they talk -FR
play Loss
adults Frustration
when talking-FR
87
TABLE 4.1(b) Key identified themes (and codes) THE C KEY THEMES THAT EMERGED (and codes)
Theme 1: Shock of the trauma (SH) Theme 2: Experience of loss (LO) Theme 3: Grieving for lost one (GR) Theme 4: Coping with daily frustration (FR)
A detailed account of the themes that emerged from the interview with Thandi will be discussed below and supported by a variety of data sources, such as letters from the school, neurological reports, psychological reports, the RAF claim and medical report form, interviews with educators and the literature review.
4.4.1 Shock of the trauma A family that is in ‘trauma’, as described by Oddy et al. (1996:90), is a family under tremendous pressure, resulting from an incident which has occurred abruptly, subjecting the family to a protracted process of adaptation to change and loss. The experience of trauma in this case has been experienced by the child who has survived the accident. He has sustained a head injury from the motor vehicle accident, which resulted in a traumatic brain injury. O’Donohoe, Fanetti and Elliott (1998:335) maintain that children experience trauma in the same manner as adults. Unfortunately, research on trauma sustained through vehicle accidents is scanty and largely undeveloped, particularly with regards to children. In an attempt to explain the experience of trauma, I will draw parallels from a sexual abuse case. Although in many respects this involves dissimilar experiences to those of TBI, the symptoms of trauma may be similar and, more significantly, as it relates to both the trauma of a child sexual abuse case and that of traumatic brain Injury. An examination of trauma intervention in both cases will be explored by drawing
88
parallels on the process of how trauma is addressed, generally. O’Donohoe et al. (1998) note that when a child has experienced trauma, for example, during sexual abuse, forensic assessment is conducted for two reasons. Firstly, it is carried out to establish whether the abuse event has occurred and so that it can be reported to the police. Secondly, it is intended to determine the validity of the occurrence of abuse in order to “make decisions about the appropriate methods of therapy that need to be rendered to the traumatised child” (Ibid. 335). The researchers further emphasize that in deciding that abuse did not occur, when in reality it did occur, can deny the child the necessary therapeutic opportunity that would otherwise help him/her to possibly deal with difficult or confusing memories. The parallel that can be drawn from the two cases is that sustaining a car accident is traumatic and experiencing sexual abuse is also traumatic, and whether a police case has been opened or not, any traumatic experience requires therapeutic intervention.
In the case of TBI, the purpose of assessment by the educational psychologist doing forensic work, according to Blau (1996:192), is to establish the extent of injury that has been caused by the motor vehicle accident, its effects, and the possibility of disability that may have accrued from the injury which may affect the possibility of “normal functioning in the future” (Ibid.) The parallel that may be drawn from the two incidences of trauma is that, with the latter, the trauma does have an effect on the cognitive functioning of the child, making it difficult for therapy to be conducted. However, the fact that the surviving child might be severely affected cognitively, need not deny him the opportunity for therapy because he does require it for “normal functioning in the future” (Ibid.) for him to contend with his condition.
However, since the traumatic experience of the child cannot be isolated from the family. The family as the system of the child, does require therapeutic intervention because of the disrupted “organisational ability and adaptability” (Gladding, 1998:41) by the accident. Experiencing an accident, takes a family by surprise and subjects the family to the “unpredictable stressor” (Gladding,1998:38) whether the family is ready to cope with it or not. As a result of the abrupt occurrence of this
89
life event, the family’s “emotional and behavioural” (Ibid. 38) functioning becomes adversely affected.
Mostly, the ability of the family to cope with the stressor depends on the magnitude and severity of the stressor and often results in loss depending on the position of the family’s developmental cycle. According to Thandi’s report (Appendix G), when the accident occurred, her husband was away at work in Witbank, coming home only at the end of the month. The accident occurred on the 25th day of the month, 3 weeks after he had gone back to work. As a result, Thandi probably found herself in a vulnerable situation with her husband’s sustained absence. She reported (Appendix G) that after she had received a call that her son had been involved in an accident, she became completely immobilised by trauma and found great difficulty in responding coherently including finding her way to the hospital. She said that she “was unable to walk, to unlock the door, to descend down the stairs as she was living at the fifth floor of the building. She was helped by her brother who came to support her. She said he had to carry her on his back down the stairs to the ground floor.” Gladding (1998:41) affirms that families who experience trauma display symptoms such as somatization experiences due to shock, change and anticipated loss.
4.4.2 Experience of loss Raphael and Dobson (2000:45) define ‘loss’ as resulting from stress, caused by a traumatic event, which leaves affected people shattered, destroyed and forced to confront their own vulnerability. In the case of TBI, Rich (2005:57) confirms that the loss of a loved one, as they used to be, is not the only loss that is experienced by the family of the survivor. It includes the loss of cognitive, emotional, physical and social functioning, particularly within the severe category of TBI experience.
The loss of physical functioning is indicated in the compensation claim and medical report form (Appendix J) and the neurosurgeon‘s report (Appendix K), that: based on the reading from the Glasgow Coma scale, Bonga was at 0/15 on admission, a significantly low score. The report outlined that he has suffered left
90
hemi-paresis, a paralysis from the left side of his body affecting his left hand and foot ... This suggests that when he walked he pulled the left side of his body, because of its weak functioning. This observation is confirmed by the industrial psychologist’s report that, “he has been rendered physically handicapped by the accident” (Appendix L). The observation that relates to this suffering is described by Thandi (Appendix G) that: “when he walks he looses balance and falls”. She also reports (Appendix G) that: “sometimes, I ask him to wash himself; he is unable to use his other hand”. This difficulty is also reported in the letter from school that has been written by his class teacher to his mother (Appendix O), stating that he experiences difficulty taking part in school sporting activities due to the leg injury from the accident. The outcomes of Bonga’s injury are similar to those outlined by the Family Caregiver Alliance (subsection 2.3.2), that the experience of motor deficits includes paralysis of the limbs, poor balance, reduced ability to plan motor movement and poor coordination.
Neurobehavioral functioning in children who have survived TBI is explained by Parker (1990:303) as including poor social skills and feeling of inferiority from rejection. This view is similar to Thandi’s reports regarding her son’s social skills. Thandi reported that: “he stays in the house and watch TV…if I ask him why don’t you go and play with your friends; he would say no, I get bored. I want to throw him a party, when I ask him to invite his friends from school, he says they do not play well with him, they smack him” and (Appendix G) she reported that: “he likes playing with children younger than him; even his friends that he goes to gym with are younger than him, it hurts me, I ask myself why can’t he play with children his age?” (Appendix G), a normal response from any mother. Thandi’s concerns regarding her son’s loss of social functioning is a difficulty any mother with a TBI child often grapples with as she journeys with her son towards recovery. Thandi has been profoundly affected by her son’s cognitive impairment. This effect is indicated in her report in the interview that: “It hurts me when he comes back from school and he gives me a letter, I get hurt and scared. I always think that when I read the letter, I will be told that my child is no longer good for the school because I see that he is slow… he is slow” (Appendix G). This statement
91
seems to suggest the possibility of a feeling of futility regarding her son’s future educational and occupational opportunities, a view that is also articulated in the industrial psychologist’s report: “It is believed that Bonga would have been in a position to matriculate. He could have had good prospects in the labour market…his educational prospects have been compromised as a result of the accident. His employment opportunities have also been compromised” (Appendix L). After TBI, the cognitive abilities required for learning are often compromised. The specific deficits evident in severe TBI which interfere with school re-entry are mentioned by Cattelani et al. (1998:283) as including intelligence, problemsolving, language-learning, memory and psychomotor performance. This view is evident in the letters from Bonga’s school that: “he is unable to work on his own”; and: “he is unable to remember when he is told to do or take a message home” (Appendix O) including comments that, “he also has a slight slur in his speech that developed after his accident. Due to the slurry speech, he suffers from a complex and does not want to take part in the classroom.” Other supporting reports from the interview with the second educator who taught him post-accident that: “he is very demanding… you need to know he cannot follow instructions. You need to go with him step-by-step. He is a one-to-one learner; he needs supervision all the time. He is not independent; you need to help him throughout” (Appendix H). Thandi added that she is called to school from time to time to discuss her son’s learning difficulties, hence her painting the door with chalkboard paint, as a place she planned to prepare when she helps him with school work at home. Although she complained that she was experiencing difficulties teaching her son, she was concerned that he did not understand what she was teaching him, and he forgot things easily.
Such cognitive deficits require appropriate medical and rehabilitative strategies, as articulated by Cattelani et al. in Chapter 2 of this study. As a result, he required more care-giving time and attention from his mother, a possible reason the younger child was sent to live with her grandmother, so as to ease the burden on the mother, as compared to other survivors who fall within the ‘mild’ and ‘moderate’ category of TBI. The impairments that Bonga had sustained from the accident had left his mother to contend with a significantly different child from the
92
one she gave birth to - a challenge she would have to live with for the rest of her life and one which might result in her experiencing grief for a long time.
4.4.3 Grieving for lost one
Head injury does not affect an individual who sustains the injury only; it also affects the whole family system. It hurts families socially, emotionally and financially. As a consequence, the feeling of ‘grief’ is evoked. Grief that is experienced after a family member has survived TBI is termed by Degeneffe (2006:12) as “mobile mourning”, since it is chronic and experienced intermittently. Also, Degeneffe believes, the TBI survivor may never regain complete pre-injury functional capacity. For Zinner, Ball, Stutts and Philput (1997:436), the ‘grief’ is experienced from TBI as a “non-death loss.” Additionally, Rich (2005:56) defines it as “the living bereavement - because the person who was, is there no longer, and yet they are”. Edelstein and Rando (in Zinner et al., 1997:436) and Atkinson (1994:1137), report that little has been done in grief work that relates particularly to acquired disability. However, Muir and Haffrey (1984, in Degeneffe, online) argue that the experience of grief reactions demonstrated by a family after TBI are similar to those described in the death grieving model of Kubler-Ross. Thus, one can infer that the experience of grief by the mother or caregiver of a TBI survivor emanates from
loss
that
has
been
observed
in
neurobehavioral
and
neuropsychological functioning.
Degeneffe (2006:12) attests that often families demonstrate a variety of grief reactions, immediately after TBI of their family member. This affirmation can be related to my observations of Thandi, the TBI survivor’s mother. She cried throughout the interview process, particularly as she was relating the story of her child’s injury. Although one might have assumed that her adjustment to the experience of TBI of her child would settle with time, in this case 18 months after the accident, this did not seem to be the case. It may therefore be the case that, as Zinner et al. (1997:436) note, the grief response patterns of families increase with the severity of the injury, and that this overrode the elapse of time.
93
In Thandi’s case, it is possible to align my observations with the above mentioned view. One would be influenced to make this assumption based on the time lapse between the interview and accident, as well as the intensity of emotion that she exhibited during the interview process. Secondly, the supporting evidence from the neurosurgeon’s report confirms the severity: “It is important to note that this boy suffered a severe and significant head injury. The length of loss of consciousness was quite prolonged. The Glasgow Coma Score was initially low” (Appendix K). Thus, this statement confirms that Bonga’s head injury experience falls within the severe range, and this category does correlate with Thandi’s intense grief. It is in this regard that Kosciulek (1993:01:online) recommends that family members require help in their own right for them to adjust to the hurt caused by TBI.
Consequently, taking care of a survivor who has suffered TBI require families to understand the type of care to be provided. The extent of care may range from limited support to a more comprehensive support, depending on the severity status of the survivor. In the case of Bonga‘s severe condition, the neurosurgeon reported that: “subtle deficits in relation to coordination and fatiguing of the left arm and leg… it has to be stressed medical intervention at this point does not produce dramatic improvements either in terms of cognitive function or in terms of function of the left arm and left leg” (Appendix K). Other confirmations have been presented in the industrial psychologist’s report that: “Bonga is currently dependent on his mother in bathing and dressing him because of his left-sided paralysis. As a result he is no longer in a position to lead a normal independent life” (Appendix L). This loss of physical and cognitive functioning has been reported by his mother in the interview: “what hurts me is that in the morning I would pour him water and say, Bonga wash, he would get into the water, Bonga take a washing rag, Bonga use both your hands, and he would do that. I would then put toothbrush and toothpaste for him to use, then I would say wash your teeth. Ok, he would then come to the bedroom, then I would say wear your shirt, he would not wear it, then I would help him to put it on, then I would leave him with the trouser, socks and shoes and tell him to put them on, while I prepare him a sandwich, when I come back I’ll find him watching TV, he wont wear his socks, he
94
would wait for me” (Appendix G). Degeneffe (2006: online) notes that care giving can result in extended parenthood, even at a stage which parenting responsibilities are expected to lessen, and thus exacerbate the experience of grief.
Most frequently, taking care of a TBI survivor brings numerous challenges to the family system. For instance, siblings of the survivor may be neglected by parents due to the demands of care-giving. During the interview process, the family comprised the mother and TBI child only. The younger sibling, Bongiwe, a girl then 6 years old, was staying with the maternal grandmother. Thandi reported that her mother took the younger child Bongiwe, so that she could have more time to look after Bonga. This observation is evident in Thandi’s circumstance; she does not stay with her younger child Bongiwe. Although she reports that: “what made me not to stay with the sibling is because he smacks her, and when he does it he smacks her too much. That is why my mother took his sibling, it’s like he looses patience with her” (Appendix G). Much as the issue of smacking seems more apparent in her response, this may not be the only reason why Thandi’s mother took Bongiwe. It is clear that she would not be able to look after the younger sibling as much as she would have liked and perform her care-giving responsibilities as effectively.
In addition, Thandi explained that since the accident she had lost her business, because of the full attention that her son requires:” I left my business, it went under because I stayed for a long time at home looking after Bonga” (Appendix G). The financial implications of TBI experience, particularly on the care-giving parent, are evident in Thandi’s instance. However, she mentioned her brother and parents as a source of support at the time.
Bonga’s scholastic functioning has been severely compromised by the accident, which extends the challenges of TBI to the school environment. Long after the accident, Bonga displayed considerable recovery and he was taken back to school. She reported that: “they called me to say Bonga is slow, he does not understand, but there’s no problem, because he got involved in an accident here
95
at school. I once received a letter which said he is not supposed to be at the school anymore. They then said they do not chase him away, they were merely saying that their school is not OK for him” (Appendix G). This evidence is supported by the letters from school that he exhibited: “very slow academic progress” (Appendix N). Similarly, the report from the industrial psychologist indicated that: “his educational prospects have been compromised as a result of the accident” (Appendix L). Other supporting evidence from the educational psychologist indicates that: “Bonga’s perceived learning difficulties are very serious” (Appendix M). These assertions are consistent with the suggestions made by Cattelani et al. (1998:283) (in chapter 2, subsection 2.3.1.3) that specific deficits that are evident in severe TBI cases include intelligence, problem-solving, language-learning, memory and psychomotor performance. These deficits become evident immediately after school re-entry, and depending on whether they are high or moderate level learning needs, they require appropriate medical intervention and learning support strategies. As a result, parents are often called to school, particularly when their child does not perform well. This adds to the stress that parents experience regarding the challenges of TBI, and often results in fear that the child may be declared uneducable and asked to stay at home, a prevailing circumstance which used to happen in the South African education system prior to1994. However, currently, such children are protected by the policy of Inclusion in White Paper 6 (DoE, 2001), as educators are aware that they need to support most learners who experience barriers to learning. Unfortunately, the minimal literacy levels of parents become another contributory variable that adds up to the challenge of learner support, yet the learning support demands are even worse with TBI cases that are in the mainstream, because they require specialised intervention. As mentioned in Chapter 2, not many educators know how to support learners who have experienced TBI.
Walter (1999:124) describes grief as an essential, natural psychological process that occurs within an individual who has experienced the death of a loved one or loss, as in non death-loss. It is important to note that the experience of grief differs from person to person, in the duration, intensity and experience of each stage. Walter (1999:165) further claims that every culture monitors grief and has its
96
norms that evaluate what is acceptable as grieving behaviour. However, he mentions that abnormal grief in Anglo/American culture is viewed as grief that goes on too long or grief that never begins, as well as grief that is either expressed too much or too little3.
The range of challenges that contribute towards the grief experience of families in their care giving functions are extensive. Most notably, Lezak (in Morris, 2001:239) argues that the difficulties families face following TBI result in their “hobbling along”, crippled by pain from unending and unrecognised problems. Thus, the presented discussion will never attempt to cover the scope of grief exhaustively. However, I believe that the discussion outlined above has significantly reflected some areas of concern and it is important to note that while living with a TBI survivor results in the experience of grief through loss of functional capacity, it can also result in the experience of frustration.
4.4.4 Coping with daily frustration
Frustration emerged as one of the key identified themes in the study. It is defined from the Oxford English Dictionary as disappointment or defeat (OED, online 1989, ed. Simpson). In this instance it may be perceived as disappointment from anticipated behaviour expectations from TBI recovery. The assertions of Mathis (1984, in Degeneffe, online) affirm that TBI can result in a variety of negative, physical, cognitive, and psychosocial outcomes for survivors, and affect the whole family system such that anxiety, shock, disbelief, denial and frustration are experienced. Thandi’s reaction elicited from the interview, as she related her son’s post-injury behaviour, was: “we bought him toys, we thought he will see them but in vain. When he began to see, he took a toy, held it, he was aware that it was a toy, but he did not know how to play with it. His head is not OK… We could see that his 3
In the writer’s culture, when a family member seems to display symptoms of abnormal grief, the person is taken to a Sangoma, who often recommends that the grieving person himself or herself requires training as a Sangoma. This perspective is similar to the Anglo/American view of taking the sufferer for psychological help.
97
mind is gone” (Appendix G). It is important to note that the rate of recovery depends on factors such as pre-injury functioning capacity, age, level of unconsciousness and the magnitude of neurological damage (Degeneffe, online). In Bonga’s case, the neurosurgeons’ report did make an indication about his severity status that: “he has suffered a severe and significant head injury. The length of the loss of consciousness was quite prolonged. The Glasgow Coma Scale was initially low” (Appendix K). However, although Bonga’s condition fell within the severe category, Davies (online) attests that recovery from brain injury can be slow in the first year or two and continue healing itself in a slow pace. This seemed to be one of the frustrations Thandi experienced while Bonga was still in hospital. In addition, his pre-injury status, as reported by his mother that he “liked to play, he would not stay at home. I would look for him, he liked to play a lot with machine games” (Appendix G) could have exacerbated the experience of his mother’s frustration, especially when she realised the condition he was in, while in hospital.
Change in behaviour has been identified as the most common and pervasive aspect that affects both the survivor and the family, (Castro-Caldas & Sousa, 1998:759). Thandi reported that: “when I have visitors, he would interrupt, talk and continue talking. When I ask him to keep quiet, he would ask me, why must he keep quiet?” Appendix G. This experience is confirmed by Castro-Caldas and Sousa (1998:760, subsection 2.4.2) that, lack of emotional control due to the effect of TBI causes embarrassment to families. Another sign of frustration was evident as Thandi reported that: “When you send him (Bonga) to do something he forgets” (Appendix G) and unfortunately, when a child has suffered TBI, impairments such as forgetting, and dis-inhibition or impulsiveness are often challenges that the family has to contend with for a long time. The situation becomes more difficult when the family has not been prepared in advance for such challenges, or advised on how to handle them. Morris (2001:241) affirms this view, that the provision of information to increase knowledge about TBI for families would play a significant role in the perception of
98
brain injury, and would contribute positively towards care and support for recovery outcomes.
Some of the perceived evidence of disbelief, risk and frustration that she reported has revealed that Bonga travels to school by train, four stations away from the station nearest to his home for about forty-five minutes. Due to his lack of balance, travelling by train has been a risky endeavour, because he could easily loose balance and slip under the train’s wheels and be killed.
Thandi also reported on the disappointing working relationship she had with the Attorney who handled Bonga’s’ case. She explained that she was hoping that the lawyer who handled the claim would buy them a house next to the school, in accordance with the Road Accident Fund (RAF) payment, as per their discussion regarding Bonga’s safety. She reported that, “the lawyer has not told me how much he has got from the Road Accident Fund. My parents told him that they want to discuss the matter with him, but they are only available during weekends. He said he is not available during weekends” (Appendix G). He did not want them to talk about buying a house anymore and merely gave her R2000.00 every month, to meet her family’s needs. This alleged lack of transparency, as articulated by Thandi, did not reflect well as sound professional practice.
Nochi (in Rowlands, 2002:276) challenges practitioners to consider their values and their patient-professional role, and suggests that practitioners working with TBI survivors and their families need to begin to understand these families from their frame of reference, in order to understand their needs better.
4.5
IDENTIFICATION OF THEMES FROM EDUCATOR INTERVIEWS
A number of themes emerged from interviews with educators.
Table 4.2: Key categories and themes which emerged from the interviews with the educators
99
1st Educator -After the accident he went completely low Incompetence
Incompetence
down -INC -He wants exactly a one to one, if you check him out he is going to sit -FR
Frustration
-He was an average child -COMP
Competence
Frustration
-I told you before that he was an average child -COMP
Competence
Competence
Incompetence
Incompetence
2nd Educator -He is very slow for his age -INC -But now he is no more average of an average child -INC
Incompetence
-No…there is a very, very bad effect -LO
Loss
Loss
-He is very demanding -FR
Frustration
Frustration
-He cannot follow instructions -INC
Incompetence
-You need to go with him step-by-step -INC
Incompetence
-He needs supervision all the time -FR
Frustration
-He is not independent, you need to help him throughout -FR
Frustration
-He is very bad, he cannot follow spelling rules -INC
Incompetence
The key themes were as follows:
Scholastic deficitt
Competence
Anxiety and disappointment
Living bereavement
4.5.1 Identification of effects of injury
The effects of the injury were identified by documents from the various professionals.
100
Table 4.3: Identification of effects of injury Page 20 Cognitive deficits... has disorders of Neurosurgeon memory,
concentration,
Appendix K
attention,
judgement… other higher mental functioning deficits in relation to sequential tasks and thought
formation,
in
relation
to
rapid
changing of sequences, rapid changing of abstract processes Page 11 On cognitive functioning… he Industrial
Appendix L
experienced problems in following some of Psychologist the instructions during testing and on the ‘problems test’ his performance falls within the average range indicating very poor numerical
reasoning,
attention
and
concentration. He presented with a poor grasp of questions which had to be repeated and he provided the same answer for different questions. Page 15 We are of the opinion that these aspects are very important in learning, and his
deficiency
in
these
areas
might
compromise his potential of learning Page 11 His work on the Bender was very Educational
Appendix M
poor and does appear to show a neurological Psychologist dysfunction. Page 12 His scores on the standardised Arithmetic test are extremely weak when his age is taken into consideration Page1 Very slow academic progress
Letter from the Appendix N
101
school Page 1 He is unable to work on his own
Letter from the Appendix O school
Although the themes that emerged from the interviews with the educators and supporting medico-legal documents were integrated with the themes that emerged from the interview with Thandi, the mother. These formed part of the narrative of the case, and further discussion of the themes that relate to Bonga’s scholastic performance pre- and post accident, are discussed below.
4.5.2 Pre- and post-scholastic functioning The acquisition of data that relates to Bonga’s pre-accident status, has been acquired from the interviews with his teachers. The interview question was: “Can you please take me through Bonga’s scholastic functioning before the accident?” Two interviews were held with both Grade two educators who taught him before and after the accident. The interview question for the second educator was the same as the initial one except that it related to post-accident functioning. Themes that emerged from the analysis of the interviews were loss, incompetence, frustration and competence.
i Living bereavement
The theme of living bereavement, a term coined by Rich (2005:56), emerged from the evidence in regard to the sense of loss experienced by his mother. Additionally, Lezak (in Morris, 2001:239) argues that the difficulties families face following TBI result in them “hobbling along” because of the unending pain and unrecognized problems.
ii Scholastic deficit
According to the observations of the educator who taught him after the accident, she indicated that the accident “had a very bad effect on his learning” (Appendix
102
H). This theme relates to the report of the neurosurgeon (Appendix K) which affirms the observations of the educator who taught him after the accident. A report by the educational psychologist highlights that, “his work on the Bender Neurological Test was poor and does appear to show a neurological dysfunction” (Appendix M).The industrial psychologist reports that on the problems test, Bonga’s performance falls within the average range. Comments from the letter from school indicated that “due to the loss of educational abilities, he displays considerable incompetence in his scholastic tasks” (Appendix L). Yet, had the injury not occurred, Bonga would probably be a competent learner who copes with his scholastic tasks.
The theme of scholastic deficit that emerged from his post-accident functioning is explained by the educator who taught him in Grade two that, “he cannot follow instructions” and “he is very bad he cannot follow spelling rules”. This scholastic deficit is confirmed by the industrial psychologist report who also reported that “on the cognition functioning he experienced problems in following some of the instructions during testing and during the assessment he presented with a poor grasp of questions, which had to be repeated and he provided with the same answer for different questions” (Appendix L).
The educational psychologists’
report (Appendix M) resonates with these observations that “his scores on the standardised Arithmetic test are extremely weak, when his age is taken into consideration.” Comments from letters from school (Appendix N) indicate that he progresses “very slow” academically. Other difficulties that were reported from the letters were that “he is unable to cope with his work in class and he is unable to work on his own” (Appendix O). These difficulties were also evident from the educator interviews that Bonga is not an “independent learner, he requires help through out the learning process, you need to go with him step-by-step and he needs supervision all the time” (Appendix H). The multiple learning challenges that Bonga exhibits in the classroom, results in educators becoming frustrated.
iii Anxiety and disappointment
103
The theme of anxiety and disappointment that has emerged from the educator interviews is similar to the frustration that Thandi, the mother, was experiencing. However, this theme is different in the sense that, the disappointment experienced by the educators relates their inability to work effectively with Bonga in the learning environment. The cognitive deficits that Bonga exhibits due to the accident and the multiple learning barriers that educators are unable to contend with are explained by Vakil et al. (2003:825). They hold that the deficits that follow severe TBI such as limited attention and inability to learn new information in the classroom adds to the frustrations that educators experience in an attempt to teach a TBI learner. Parker (1990:290) argues the professionals within the schools are often not “appropriately trained to support the TBI child in the classroom”. The feeling of inadequacy of the educator results in the perception of the learner as a “demanding child.”
iv Competence
The theme of competence emerged from the interview of the educator who taught Bonga pre-accident. She describes Bonga as an “average” learner. As a result, this suggests that if he had not been involved in the motor vehicle accident, he would not be experiencing the multiple barriers to learning that are evident in the classroom. What is important to note is that the school as part of his system, had an opportunity to realise his capabilities pre-accident. However, as a result of the accident, he exhibits severe learning difficulties which the school seems unable to cope with. Yet, on the other hand, the medico-legal team has made assessments, whose reports are not communicated to the school, to afford the school an opportunity to know his post-accident functional status. This leaves the school to contend with his post-accident scholastic difficulties and unaddressed gaps of knowledge. Power et al (1999:225) highlight the significance of the different “agencies and professionals” to collaborate as they collate information on the scholastic and emotional functioning of the TBI child, to facilitate the available support resources, since they form part of the child’s subsystem.
104
If the school functions in isolation, the questions that comes to mind is: What would be the magnitude of the mother’s frustration when the school calls her to discuss their frustration about the child, and indicates that he is not benefiting from their attempts, and suggest that he is transferred to a school that would provide for his learning needs appropriately? Will the mother be ready to accept these suggestions and act upon them? Where will Thandi obtain support that will help her and her family work through another distressful episode? The mother’s fear has been indicated that: “it hurts me when he comes back from school and he gives me a letter. I get hurt and scared. I always think that when I read a letter, I will be told that my child is no longer good for the school because I see that he is slow” (Appendix G).
4.6
SUMMARY
In this study, an attempt was made to investigate family experiences of TBI. The study included the narrative of the case study as a background. Data gathered through observations, and the analysis of transcribed and translated interviews, hospital records and psychological reports from the medico-legal team and letters from the school, led to the emergence of themes, namely trauma, loss, grief, frustration, incompetence and competence.
In the following section, a summary of the study will be presented and the recommendations will be outlined.
105
CHAPTER FIVE
SUMMARY AND RECOMMENDATIONS
5.1
INTRODUCTION
This research was conducted with a family from a low socio-economic bracket and within a particular South African context. A Black family whose child had survived TBI was selected as the unit for the case study. The study focused on the family system, aimed at understanding the family experience of TBI. An extensive literature review was conducted to examine and establish theories that explain the experiences of a family which are similar to those that relate to the topic of the study. Systems theory was identified and chosen to form the conceptual framework for the study as, according to Donald, Lazarus and Lolwana (2002:4750); Nichols and Everett (in Gladding, 1998:74); Janzin and Harris (in Herbert & Harper-Dorton, 2002:19) and Huitt (2003: online), it sees “different levels of groupings of the social contexts as systems where the functioning of a whole is dependent on the interaction of its parts”. It is against this background that the family is regarded as a system whose functions internally and externally are interdependent on each other. A qualitative research design based on a “particularistic” case study was used to gather a rich thick description of the family’s recollections and experiences. Data collection was conducted through semi-structured interviews with the mother and the two educators, who taught the survivor of TBI before and after the accident. The main question of the interview was: “Can you please take me through the story of your sons’ injury?” Interviews with the family were conducted in the language of Northern Sotho, recorded on audio-tape, transcribed and translated into English by the researcher. The interviews with the two educators who taught Bonga before and after the accident were conducted in English, and included the question: “Can you please talk me through the story of Bonga’s accident and
106
explain how it affected his post accident scholastic functioning?” The interviews were audio-taped and transcribed. The interview process was conducted when the TBI survivor was in Grade three, almost eighteen months after the accident occurred. Reports from the medico-legal team have been analysed and used as supporting documents in a process of triangulation for establishing the truthfulness of the findings.
Data analysis was done using content analysis and the constant comparison method, with data being collated, reduced, coded and clustered to establish patterns of emerging themes. The aims of answering the research question were focused upon throughout the study.
5.2
SUMMARY OF THE FINDINGS
In this section I shall summarise the main themes of the findings of the study that have attempted to answer the research question: How can educational psychologists understand the experiences of a family whose child has suffered TBI?
These findings concur with the claims made by Oddy et al. (1996:90), that:
A family goes through an immense pressure after their child has sustained a traumatic brain injury. This abrupt traumatic experience disrupts the family structure and affects the family emotionally, psychologically, socially and financially.
The experience of trauma subjects the family to an abrupt change and leads the family system to make a quick adjustment for which it has not been prepared. On the other hand, the family has to contend with the loss of their child and its effective replacement by a ‘different’ child, who has been changed, physically, emotionally, psychologically, educationally and socially by the effects of the injury. Due to the loss, however, a non-death loss, the family is left with a feeling of
107
mixed emotions of loss and gratitude that at least the sufferer has survived. Yet, when the post-injury characteristics seem to persist, frustration is experienced due to lack of information, knowledge and support on how to deal with the apparent challenges, as well as to provide appropriate support and care for the surviving family member. Due to the accident, the parents’ role in providing support to their child in the learning environment seems limited and difficult because their child would not have been classified as a special school candidate prior to the experience of the trauma. As a result, parents are less likely to be able to advocate their child’s special educational needs as compared to the parents of children born with medical and health conditions that require high support needs who may have learned the skill over time of how to work with the education system (Martin, 1990:395).
The purpose of the study conducted by the researcher was to highlight a concern about the observed gap that seems to exist in litigation, within the observed practices of the medico-legal team in particular relation to the role and responsibility of the educational psychologist. The litigation process was perceived by the researcher as focussed on the processing of claims from the compensation fund, while family needs regarding their experience of trauma seemed to be compromised.
There have been observed similarities of practices from the reports of the documents which have been used as supporting evidence. For instance, specialists, who worked with the participating family of this case, have not made any recommendations for the family to attend trauma counselling as an initial stage of crisis intervention. Recommendations of psychotherapy by the educational psychologist have been indicated in the report after the evaluation process was completed. Yet, nothing is reported in relation to the follow-up to establish whether psychotherapy had taken place during and after the litigation process is completed. This approach seems to suggest that the process of psychotherapy is left to the discretion of the participants. Leaving the responsibility solely in the hands of the family, an inappropriate professional practice, as the family may not have any knowledge or expertise to help themselves regarding this
108
matter. This gap suggests that the focus on the TBI survivor to facilitate recovery has to incorporate the family in the treatment process, by ensuring that intervention and appropriate support is offered, for healing and restoration of balance to facilitate the desired adjustment.
The systems approach standpoint in a family intervention process when working with children who have suffered TBI, suggests that children need to be viewed as part of their family system and not be treated in isolation. Although the medical approach to TBI management, intervention and support aims to restore and cure the survivor of visible injury, it is important to note that the family is also injured, though their injury is not visible. This view puts the family as the most important partner in litigation and an indispensable asset for supporting the recovery process of their child. Thus, if the family is acknowledged as a system, and its support needs are met during the litigation process, the consideration will put the family in a better informed and able position to support and care for their child appropriately, through the process of recovery. According to the systemic model, if the family is not acknowledged during treatment, family injury may compromise the
survivor’s
recovery process,
consequently subjecting
the
family to
dysfunctional behaviour and delayed adjustment.
As a consequence, the following recommendations for educational psychologists are suggested below. This is aimed at contributing to existing principles of theory and practice for educational psychologists who do medico-legal work.
5.3 RECOMMENDATIONS FOR EDUCATIONAL PSYCHOLOGISTS
The origin of the following recommendations has been constituted around the key themes that emerged from both the family and educator interviews conducted in this study. They are aimed at contributing to theory and practice that relates to educational psychologists who do forensic work. Thus, the following principles are suggested:
109
In working with children who survived TBI, it is important to note that they are part of a system, which is their family. This approach requires an educational psychologist to acknowledge that the whole family has directly and indirectly shared the trauma. As a consequence, an inclusive approach to intervention may be instituted as support for the survivor whose recovery is dependent on the healthy functioning of the family. The suggested approach to intervention for the family, due to the experience of trauma, is congruent with the purpose of litigation, since both processes are envisaged at financial support for the facilitation of appropriate adjustment for the family on their journey to recovery with their child.
Thus, in line with this principle, Section IV(a) of Forensic Psychology Speciality Guidelines: Methods and Procedures, Blau (1998:524) suggests that families require support, I recommend that: educational psychologists, because of their special status as qualified experts, and forensic psychologists to the court, have an obligation to maintain current knowledge and scientific, professional and legal developments within the area of claimed competence. They are obligated also to use that knowledge, consistent with accepted clinical and scientific standards, in selecting data collection methods and procedures, for evaluation, treatment or consultation; including respect and perpetuation of the rights of the people they serve (Blau, 1998:524).
There is no evidence from the available documents that suggests that trauma debriefing was carried out. What is evident; however, are the recommendations for psychotherapy that have been suggested long after the family had experienced trauma. Implementation of these recommendations is often not monitored to determine whether or not they have been carried out. As a result, this may suggest that the recommendations for psychotherapy came as an afterthought, when the actual assessment process is complete. In addition, the report of the counselling psychologist is not included in all the supporting documents, thus, suggesting that the counselling needs may have been perceived as less important.
110
In the light of these findings, I therefore recommend that an understanding of the recovery process by the educational psychologist from a position of expertise, based on the medical model, requires an alternative theoretical framework. Secondly, the deficit approach to practice, where professionals view TBI survivors as objects to be fixed, requires a shift towards to an approach that acknowledges a TBI survivor as a human being whose needs require to be viewed as a subsystem of the bigger system. Recovery from health and mental health forms a significant component of his life. This view cannot isolate the TBI survivor from his family since the family system forms an important source of support. It is significant to note that while claiming for compensation is important, the mental health of the entire family is equally important for appropriate management and utilisation of the compensation fund in the long-term. The intervention process requires an acknowledgement of the needs of the whole system and the mobilisation of all resources within the survivor’s system to collaboratively work together for the desired recovery of the child (Nochi, in Rowlands, 2001:276). Bonga’s mother experienced frustration as she was working with the lawyer who represented her family in the court of law. This was in relation to the promises made by the lawyer to assist the family in meeting their dire primary need for a house that would contribute to the alleviation of their unhealthy residential conditions. According to her reports, her expectations were not met by the lawyer. This experience left her disappointed and frustrated by the attorney’s breach of promise and unsatisfactory service that was rendered. In the light of these findings, I recommend that educational psychologists, who conduct forensic work, support these vulnerable families and consider families in need and ‘partners’ who require to be empowered to be able to provide for their children’s long-term care high level support needs, as suggested by the South African Federation for Mental Health (1997:7). A further suggestion is that, where possible, a post-litigation programme could be designed to make contact and offer support to the families, at least twice a year, to establish if they are coping in this adjustment phase and mediate on the support needs that may require to be addressed.
111
The experience of grief emerged very clearly during the interview with Thandi, Bonga’s mother. Significant aspects were the strong emotions of loss that she continued to endure long after the traumatic accident of her son. This feeling of chronic grief is termed by Degeneffe (2006: online) as “mobile grief” and by Rich (2005) as “living bereavement”.
Thus, emerging from these supporting views to the findings, I suggest that educational psychologists, as experts in their field, inform and educate the medico-legal team about the experiences of families, suggesting that they be provided with trauma counselling, grief counselling and empowerment, in order to cope with their challenging circumstances. It is against this background that I recommend the inclusion of a counselling psychologist or particularly a second educational psychologist in the medico-legal team, to provide on-going psychotherapy to the family for appropriate adjustment to the abrupt loss of ability in their child, and to the child. Psychotherapy for the TBI child will assist him or her as s/he re-enters the school system, to accept and cope with the condition and to minimise the multiple acquired barriers that are associated with TBI experience. This process may even include learning programmes by for example the educational psychologist in particular, to teach families to effectively use the money that the team has gained through litigation, should the process be successful. The latter suggestion is provided in line with the findings of Mokhosi and Grieve (2004) in Chapter 1, that most families whose children suffer motor vehicle accidents have low literacy levels and also poor financial literacy skills, which impedes their effective use of the litigation money in the long-term care of the TBI child.
The experience of TBI on the survivor has huge implications for learning, as suggested in Chapter 2. Thus, the second educational psychologist would be better positioned to provide support on the impact to learning that has been evident in the findings of this research from the presentation of the themes of scholastic
deficit,
competence,
anxiety
and
disappointment,
and
living
bereavement in Chapter 4. In the light of the presented findings, I recommend that educational psychologists refrain from using an intervention approach that focuses
112
on diagnosis, assessment and therapy, based on the “microscopic medical model” and make a move to a “macroscopic integrated intervention model” to enhance their service provision. As it has been noted in the Literature review, suffering TBI can subject the survivor to difficulties such as attention, concentration, memory, communication, hearing impairment and physical problems. Experiencing these multiple challenges, the child is subjected to a range of health and other related barriers to learning which impacts on the child’s ability to perform competently in the classroom. It is against this background, that an awareness of these multiple impairments be raised by the educational psychologist who works from a systems approach with TBI children in the school. Thus, suggesting a need for educational psychologists in their role as child service providers to familiarise themselves with the new policies of the South African educational system, in order to be in the best position to assist and manage both the health and educational challenges of the children who sustained and survived TBI. Use by the educational psychologist of the following approaches, as Power et al. (1999:251-5) suggest, is imperative:
(i) To consider the use of an integrated approach to intervention aimed at improving the instructional outcomes of learners in an attempt to overcome or minimize the barriers to learning, including health and mental health problems.
(ii) To extend their responsibilities to the training of educators on how to identify and assess TBI learners’ academic needs and to design appropriate and effective acceptable educational interventions that are feasible. It is necessary to examine potential barriers to learning, and collaborate with other school professionals and parents to reduce the prevalence of such impediments within the schooling system.
(iii) To serve children who require high education support needs that require multiple
intervention
strategies
for
various
chronic
illnesses
and
developmental disabilities, such as ADHD, pervasive developmental disorder, HIV/AIDS and TBI. This approach will require the educational psychologist to play a vital role as case manager within the school and work with the
113
Institution/School Based Support Team to provide guidance in the process of developing curriculum adaptations, accommodations, interventions, and progress monitoring procedures.
(iv) The educational psychologist can also serve as a programme developer to establish community responsive programmes based on the interests and various levels of needs of the school and its community.
(v) The educational psychologist, who is knowledgeable about integrating the educational, health and mental health systems of care, can provide coordinated services for children who experience multiple challenges and barriers to learning. This unique position to provide training to other professionals and to train family members to become effective advocates for their children can help the educational psychologist to provide appropriate and relevant service.
(vi) Equally important is the role of the educational psychologist to teach the classmates of a child with a particular health condition on how to play and respect the child for who he is raise awareness of the limitations the child may have in the classroom or playground.
(viii) Other members from intersectoral departments, such as paediatric healthcare providers, can benefit from the educational psychologists’ knowledge about the dynamics and ecology of the school, personnel, policies and practice, to facilitate effective communication and collaboration in integrated intersectoral service provision.
Lastly, Power et al. (1999: 259) also suggest that university-based educational psychology training programmes need to incorporate speciality courses that address medical conditions and the management of paediatric medical problems such as epilepsy, HIV infected learners who are on anti-retroviral therapy programmes, and TBI learners who are on medication, in their training of future educational psychologists.
114
A consideration of the above mentioned recommendations and approaches to educational psychology work imply that the educational psychologist, as a child advocate, has an obligation as an expert, to keep all the systems of the child abreast with current accepted clinical and scientific standards that relate to his/her profession and that have a specific effect on the dignity and the rights of the child.
5.4 IMPLICATIONS FOR FURTHER RESEARCH
The impairments and disabilities sustained through head injury in particular, contribute to a considerable number of learners who are identified as experiencing barriers to learning within the school system. The majority of survivors, as mentioned by Mokhosi and Grieve (2004:303) in the previous chapters, are largely from the low socio-economic population groups. Of major concern here is that the effects of head injury are not succinctly classified as a separate category of learning barriers within the framework of learning disabilities or learners with special needs (LSEN). Secondly, the Department of Education in their document on Inclusion Policy: White Paper 6, (DoE, 2001), has not included the different classifications of learning disabilities, in order to assist particularly the educators to be conversant with the various categories of disabilities. Yet the document forms a significant part of policy documents that represent the needs of learners experiencing barriers to learning. Thirdly, it is one of the most important documents that educators are supposed to know and keep in their files and refer to as they perform their daily tasks. As a result, not much is known by the educators about the various learning barriers, particularly this population of learners or how to support them in the mainstream. The gap is even wider when one considers the education system prior to 1994, when there was an imbalance in funding of the different previously segregated education departments. What I have significantly noted in my observations in several contexts in which I have interacted, is that learners who have suffered TBI with or without physical difficulties, fall short of being properly identified or are wrongly classified, resulting inappropriate placement and inadequate support.
115
These children and their families would probably benefit if further research into support programmes for TBI learners were to be explored in both mainstream and special schools to determine if their learning needs were met. The other implication for research would be to examine whether family needs are taken into consideration when a rehabilitation programme is designed for the TBI survivor at the Rehabilitation Units in hospitals. Further research needs to be conducted to establish whether learners who experience barriers to learning and TBI survivors in particular within the mild and moderate category are accommodated in either mainstream education or special schools develop either dependency or independent behaviour post- school. An investigation is required to determine the extent to which educational psychologists are conversant with education policies and how these policies impact on their work and the communities they serve.
Lastly, the support needs of families whose children had survived TBI also need to be investigated, since their experience has already been explored.
5.5 LIMITATIONS OF THE STUDY
During the data collection process, I did not succeed in my attempts to interview Bonga. I perceived him as appearing shy and unwilling, or unable to respond to our conversation, when I asked him to relate his story of the accident. I did not pursue the interview; I respected his right to dignity and respect as ethical principles that protect the respondent from his position and status (resulting from the effects of the injury to this cognitive functioning). The second limitation relates to my inability to interview Thandi’s cousin, who came from Pietersburg to assist Thandi in looking after Bonga. During the time of the interview she was not available as she had gone to Polokwane to visit her other relatives. Due to time constraints, I could not wait for her to return to be interviewed. Consequently, this has led to my unit of study being relatively small; only one family member’s experiences has been studied, that of the mother and prime caregiver of the TBI child.
116
5.6 CONCLUSION
This study was conducted with an aim of achieving the following outcomes: (i) To broaden my understanding of family experience of TBI. (ii) To determine whether family needs are taken into consideration during the process of medico-legal work with a TBI child. (iii) To add to the body of knowledge, policy and practice of educational psychologists who work with families of children who survived TBI, in an attempt to bridge the gap that exist in medico-legal work. (iv) To assist educators who teach children who survived TBI to understand what their families are experiencing.
Consequently, all the outcomes have been achieved. Firstly, my understanding of family experience in relation to TBI has been broadened. I have acquired a basic understanding of the anatomy of the brain and how it is affected when injured, and how injury to the brain affects the survivor and his family. This includes an understanding of family organisational forms, systems and functions, and their response patterns to crisis and stressors. Secondly, from the findings, I have been able to determine that family needs are not necessarily always taken into consideration during the medico-legal intervention process. There is no evidence of a documented report which indicates that the family received trauma debriefing before the process began or in the interim. Mention of psychotherapy was made after all the assessments had been done by the respective specialists, however no mention of whether a follow up regarding the completion of the psychotherapy process has been documented.
Thirdly, recommendations for educational psychologists working with children who survived TBI and their families have been provided to add to the principles that govern theory and practice, aimed at bridging the identified gap of knowledge. Fourthly, an extensive account of the effects of TBI on the learning of children and
117
how it affects families have been examined in a literature review, for use by educators as a resource to understand the various learning challenges and barriers to learning that emanate from the experience of TBI have been provided. Fifthly, an extensive account of the consequences of TBI to all the systems of the child has been provided.
On reflection, conducting a study of this magnitude has been a daunting experience. I was actually not aware of the implications of my curiosity and what it would lead me towards. I think one of the most challenging aspects in the study was the necessity to familiarise myself with many medical and legal concepts. Secondly, I was not aware that I would be integrating four different fields, namely, psychology, law, medicine, and education. However, I believe I have grown and now have a deeper understanding of these different fields and their significance to this study and my work as educational psychologist who intends doing forensic work.
Thirdly, I have learnt that although the fields appear different, knowledge about their interrelatedness could afford one a considerable contribution to the profession, not forgetting the community one serves, my passion and interest in the TBI field has significantly increased. This feeling of growth has been facilitated by having to undergo an internship in a specialised school. I had an opportunity to interact with children who have survived TBI. I view this opportunity as a lifetime experience that has afforded me a chance to integrate theory and practice in terms of TBI experience from the perspective of the child and one school environment.
Much as the focus of the study was on TBI experience without physical injuries, I was able to realise the relatedness of the two injuries and how the result of the experience subjects the child to multiple barriers to learning. What has been my concern is that, in most cases, the effects of TBI of the learners with whom I interacted with were often overshadowed by the visible physical challenges they experienced. This is as a result that firstly, the effects of TBI are not visible. Secondly, the school has been classified as a school that provides support to
118
physically challenged learners
particularly due
to
its enabling physical
environment, including the various supporting therapists for medical intervention and not about its learning programme. Thirdly, the learners have been referred to the school particularly because they became physically immobilised as a result of the accident. Yet, other conditions such as the effects TBI that these learners experience are not catered for. These observations led to the realisation that there is still a need for raising awareness of the impact of TBI on a child’s learning in the school environment.
Lastly, as a mother and caregiver of a TBI surviving child, I have gained considerable knowledge regarding my son’s health and mental health condition. Conducting this study has been a journey towards healing and understanding of the loss, ongoing grief and frustration that one experiences as a mother. It is now the eleventh year after my son has experienced TBI, and in reflection, I can confirm that amongst the themes that have been identified in this study, I have recovered from trauma, but I am still feeling the experience of the other themes, particularly, grief, frustration and the loss of the child I had, before the accident. Much as I identify with the findings of the one family participating in this study, it does not mean that all families/caregivers of TBI children have had similar experiences. Every family is different and experiences TBI in its own unique way and my sincere hope is that the recommendations of this study will help to alleviate some of the pain and suffering that other families with TBI children may experience.
BIBLIOGRAPHY Ahmed, S., Bierley, R., Sheikh, J.I., & Date, E.S. (2000). Post-traumatic amnesia after closed head injury: A review of the literature and some suggestions for further research. Brain Injury, 14(9), 765-780.
119
Balley, C.A. (1995). A guide to field research. California: Pine Forge Press. Blau, T.H. (1998). The psychologist as expert witness. (2nd edition). New York: John Wiley & Sons.
Bamdad, M. J., Ryan, L.M. & Warden, D.L. (2003). Functional assessment of executive abilities following traumatic brain Injury. Brain Injury, 7(12). 10111020.
Bettis, P. & Gregson, J. (2001). The why of quantitative and qualitative research. In Farmer, E.I. & Rojewski, J.W. (Eds.), Pathways: Writing professional papers, theses and dissertations in Workforce Education (pp1-22). New York: University Press of America, Inc.
Cattelani, R., Lombardi, F., Brianti, R. & Mazzucchi, A. (1998). Traumatic brain injury in Childhood: Intellectual, behavioural and social outcome into adulthood. Brain Injury, 12(4), 283-296.
Creswell, J.W. (1998). Qualitative inquiry and research design: choosing amongst five traditions. Thousand Oaks: Sage.
Dallos, R. & Draper, R. (2000). An introduction to family therapy: Systemic theory and practice. Maidenhead: Open University Press.
Davies, S. (2001). The Psychology of Head Trauma (Health and Fitness iAfrica.com)
Retrieved
09/20/2005
http://
health.iafrica.com/psychonline/
articles/224341.htm.
Degeneffe, C.E. (2001). Family caregiving and traumatic brain injury. Health and Social Work, 26(4) 257-268.
Degeneffe, C. E. (n.d). Family caregiving and traumatic brain injury.
120
Retrieved January 31, 2006 from http://www.birf.info/home/library/profrssional/pro_famacare.html
Denzin, N. K. & Lincoln, Y. S. (1994). Handbook of Qualitative Research. London: Sage Publications
Diamond, P.T. & Macciocchi, S.N. (1998). Head injury-a survey of current practices in preventive health care counselling, Brain Injury, 12(10), 817-820.
Donald, D., Lazarus, S. & Lolwana, P. (2002). Educational Psychology in social context. (2nd edition). RSA: Oxford University Press.
Eker, C., Schalen, W., Asgeirsson, B., Grande, P.O., Rantam, J. & Nordstrom, C.M. (2000). Reduced mortality after severe head injury will increase the demands for rehabilitation services, Brain Injury, 14(7), 605-619.
Esq, J.E.B., (1998). A good first step nationwide aid to persons with brain injury: The traumatic brain injury Act of 1996. Journal of head trauma rehabilitation, 13(1), 80-83.
Family caregiver Alliance, Retrieved 02/05/2003, http://www.caregiver.org.
Gladding, T. (1998). Family therapy; history, theory and practice. New Jersey: Prentice Hall. Inc.
Greenspan, A.I. & Mackenzie, E.J. (2000). Use and need for post-acute services following paediatric head injury, Brain Injury, 15(1), 1-13.
Grieve, K. (2002). Experiences of traumatic brain injury. Unisa Psychologia, 28, 62-66.
Health Professions Council of South Africa (2002) Ethical codes
121
Heitger, M.H., Macaskill, M.R., Jones, R.D. & Anderson, T.J. (2005). The impact of mild closed head injury on involuntary saccadic adaptation: Evidence for the preservation of implicit motor learning. Brain Injury, (19)2, 109-117.
Henning, E., Van Rensburg, W & Smit, B. (2004). Finding your way in qualitative research. Pretoria: Van Schaik.
Herbert, M & Harper-Dorton, K.V. (2002). Working with Children, Adolescents and their Families., London: BPS Blackwell.
Hibbard, M.R., Cantor, J., Charatz, H. & Rosenthal, R. (2002). Peer support in the community: Initial findings of a mentoring program for individuals with Traumatic Brain Injury and their families. The Journal of Head Trauma Rehabilitation, 17(2),112-131.
Hole, J.N. (1993). Human Anatomy Physiology. England: WMC Brown Publishers.
Huitt, W. (2003). A Systems Model of Human behaviour. Retrieved May 30, 2006 from http://Chiron.valdosta.edu/whuitt/materials/sysmdlo.html
Ignatavicius, D.D. (2006). Rehabitation concepts for acute and chronic problems. In Ignatavicius, D.D & Workman, M. L.(Eds.), Medical-Surgical nursing. Volume 1(pp.118-133) St Louis, mo: Elesevier Saunders
Kosciulek, J.F. (1993). A theoretical framework for family adaptation to head injury. Journal of Rehabilitation. Retrieved January 20, 2006, http://www.findarticles.com/p/articles/mi_m0825/is_n3_v59/ai_14567660/p rint.
Lannoo, E., Colardyn, F., Jannes, C. & De Soete, G. (2001). Course of Neuropsychological Recovery from Moderate-to-Severe Head Injury: A 2-year follow-up. Brain Injury, 15 (1),1-13.
122
Mashall, C. & Rossman, G.B. (1995). Designing qualitative research. (2nd edition). London: Sage Publications. Mason, J. (2002). Quantitative researching. (2nd edition). London: Sage Publications.
Martin, R. (1990). Legal Challenges in TBI. In Biegler, E.D. (ed.), Traumatic Brain Injury: Mechanisms of damage, assessment, intervention and outcome. (pp.395-408). U.S.A. Pro-Ed Inc.
Maykut, P.S & Morehouse, R., Beginning qualitative research: a philosophic and practical guide. London: Farmer Press
McKenry, P.C. & Price, S.J. (eds). (1994). Families coping with problems and change: A conceptual overview. London: Sage Publication.
Mckinlay, W.M. & Watkiss, A. J. (1996). Long-term management. In Rose, F. D. & Johnson, D.A (Eds.), Brain injury and after: Towards improved outcome (pp. 119-144). Chichester: John Wiley and sons.
Melamed, L. E & Wozniak, J. R. (1998). Neuropsychological Assessment. In Vance H. B (Ed.), Psychological assessment of Children: Best Practices for School and Clinical Settings (pp) New York. John Wiley and sons.
Merriam, S.B. (1998). Qualitative research and case study applications in education. San Francisco: Jossey-Bass, Wiley Company.
Merriam, S.B. & associates. (2002). Qualitative research in practice: Examples for discussion and analysis. San Francisco: Jossey-Bass, Wiley Company Mokhosi, M.T, & Grieve, K.W. (2004). African families’ perceptions of traumatic brain injury. South African Journal of Psychology (34)2, 301-317.
123
Molefe, R.M.L. (1999). Language related emotional problems of limited English proficient learners in grade one. RAU: Unpublished Dissertation.
Morris, K.C., (2001). Psychological distress in cares of head injured individuals: The provision of written information. Brain Injury, 15(3), 239-254.
Mulenga, D. (2001). Cases Study Research. In Farmer, E. I. & Rojewski, J.W (Eds.), Pathways : Writing professional papers, theses and dissertations in workforce education (pp.129-156) New York: University Press of America, Inc.
Mwamwenda,T.S. (1995). Educational Psychology: An African perspective. Durban: Butterworths.
Nabors, N., Seacat, J. & Rosenthal, M. (2000). Predictors of caregiver burden following traumatic brain injury. Brain Injury, 16(12), 1039-1050.
Nassar, F.M. (2001). Selecting an appropriate research design. In Farmer, E.I & Rojewski, J.W (Eds.), Pathways : Writing professional papers, theses and dissertations in workforce education.(pp) New York: University Press of America, Inc.
National Centre for Educational Studies (NCES) (n.d.). Retrieved May 25,2005 http://nces.ed.gov/naal/defining/defining.asp.
Obrzut, J.E. & Boliek, C.A. (1991). Neuropsychological Assessment of Childhood Learning Disabilities. In Swanson H.L (Ed.), Handbook on the Assessment of Learning Disabilities: Theory and Practice. (pp.121-146). USA:Pro-Ed. O’Donohue, W., Fanetti, M. & Elliott, A. (1998). Trauma in Children. In Follett, V.M., Ruzek, J.I. & Abueg, F.R.(Eds.), Cognitive behavioural therapies for trauma.(pp)
124
Oddy, M., Yeomans, J., Smith, H. & Johnson, J. (1996). Rehabilitation. In Rose, F.D. & Johnson, D.A. (Eds.) Brain injury and after: Towards improved outcome (pp.73-96). Chichester: John Wiley and sons. O’Shea, D.J. & O’Shea, L. (2001). Families and teachers of individuals with disabilities: Collaborative orientations and responsive practices. USA: Pearson Education.
Orto, A.E.D. & Power, P.W. (1994). Head injury and the family: A life and living perspective. Florida: PMD Publishers Group.
Parker, R.S. (1990). Traumatic brain injury and neuropsychological impairment: sensorimotor, cognitive, emotional and adaptive problems of children and adults. New York: Springer-Verlag. Patton, M.Q. (2001). Qualitative research and evaluation methods. (3rd edition). London: Sage Publications.
Power, T.J., McGoey, K.E., Tuesday Heathfield, L., & Blum, N.J. (1999). Managing and preventing chronic health problems in children and youth: School psychology’s expanded mission. School Psychology Review, (28)2, 251-264.
Rich, M. (2005) Coping with Brain Injury: How to help after accidents, stroke and illness. Great Britain. Sheldon Press.
Road Accident Fund. (2002). Retreived 04/20/2002 http://www.raf.co.za/index.htm.
Rose, F.D. & Johnson, D.A. (Eds.) (1996). Brain injury and after: Towards Improved Outcome. Chichester: John Wiley and sons.
125
Rowlands, A. (2001). Removing barriers: Ability or disability? Strength-based practice in the area of traumatic brain injury. Families in Society, 82(3): 273286.
Satir, V. (1972). People making USA science and behaviour. Palo Alto: Books Inc.
Silver, C.H, (2000). Ecological validity of neuropsychological assessment in childhood traumatic brain injury. The Journal of Head Trauma, (15)4, 973-989.
Silverman, D. (2001). Interpreting qualitative data: methods for analysing talk, text and interactions. London: Sage
Simpson, J. (ed.) Oxford English Dictionary (2006). Retrieved March 23, 2006, www.oed.com.
South Africa, Department of Education. (2001). Education White Paper 6: Special needs education – building an inclusive training system.
South African Federation of Mental Health. (1999). Mental health service user support: Families as partners in care. Psychosocial Rehabilitation, 6(2), 3-17.
Stewart-Scott, A. M. & Douglas, J. M. (1998). Educational outcome for secondary and post-secondary students following traumatic brain injury. Brain Injury, 12(4) 317-331.
Sue, D., Sue, D. & Sue, S. (2002). Understanding abnormal behaviour. Boston: Houghton Mifflin.
Swart, E., Engelbrecht, P., Elloff, I., Pertipher, R. & Oswald, M. (2004). Developing inclusive school communities: voices of parents of children with disabilities. Education as Change, 8(1), 80-108.
126
Tanya, C.E., Rapport, L.J., Coleman, R.D. & Hanks, R. (2002). Predictions of caregiver and family functioning following traumatic brain injury: Social support moderates caregiver distress, Brain injury, 17(2),155-174.
Tyerman, A. & Booth, J. (2001). Family interventions after traumatic brain injury: A service example. Neuro-rehabilitation, 16, 59-66.
University of Johannesburg (2005) Proposed ethics Guidelines, Online.
Vakil, E., Sharot, T., Markowitz, M., Aberbuch, S & Groswasser, Z. (2003). Script memory for typical and atypical action: controls versus patients versus patients with severe closed-head injury, Brain Injury,17(10) 825-833.
Walter, T. (1999). On Bereavement: The Culture of Grief. Philadelphia. Open University Press
Webster-Stratton, C & Herbert, M. (1994). Troubled families-Problem Children: working with parents, a collaborative process. Chichester: John wiley and sons.
Weiner, B. R. & Wettstein, R.M. (1993). Legal issues in mental healthcare. New York. Plenum Press.
Wrightsman, L.S., Nietzel, M.T. & Fortune, W.H. (1998). Psychology and the legal system. Boston: Brooks/ Cole Publishers Company.
Wrightsman, L.S. (2001). Forensic psychology. USA: Wadsworth.
Yin, R. K. (1984). Case study research: design and methods. Beverly Hills: Sage Ylvisaker, M. (1998). Traumatic Brain Injury Rehabilitation: Children and Adolescents. Boston. Butterworth-Heinemann.
127
Zinner, E. S., Ball, J. D., Stutts, M. L. & Philput, C. (1997). Grief Reactions of Mothers of Adolescents and Young Adults with Traumatic Brain Injury. Archives of Clinical Neuropsychology, (12)5, 435-447.
ADDITIONAL READING LIST
Bazarian, J.J., Mcclung, J., Shah, M.N., Cheng, Y.T., Flesher, W. & Kraus, J. (2005). Mild traumatic brain injury in the United State 1998-2000, Brain Injury, 19(2) 85-91.
Capitani, G.M. (1996). Long-term outcome after traumatic brain injury: Neuropsychological status and adjustment. Unpublished doctoral dissertation, Rand Afrikaans University, Johannesburg, South Africa.
Hanna, S.M. & Brown, J.S. (2004). The practice of family therapy: Key elements across models (3rd edition). Canada: Brookes. Miles. M. B, & Huberman, M. A. (1994). Qualitative Data Analysis: An Expanded Sourcebook. London. Sage publications.
Hellawell, D .J., Taylor, R. & Pentland, B. (1999). Cognitive and psychosocial outcome following moderate or severe traumatic brain injury, Brain Injury,13(7) 489-504.
Jacobs, S., (1999). Traumatic Grief: Diagnosis, Treatment and Prevention. New York. Hamilton Printing Company. Martin, K.M. (1994). Loss without death: a dilemma for the head-injured patient’s family, Journal of neuroscience nursing,26(3) 134-139.
Olson, D.A. (2004). Head Injury. Retrieved June 06, 2004, http://wwwemedicine.com/Neuro/topic153.htm.
128
Raphael, B, & Dobson, M. (2000). Bereavement. In Harvey, J.H. & Miller, E.D (Ed.), Loss and trauma: General and close relationship perspectives. Sussex: Routledge.
Reber, A.S. (1985). The penguin dictionary of psychology. England: Penguin.
Reinking, J.A. (1996). Strategies for successful writing: A rhetoric research guide, reader and handbook. (4th ed). New Jersey: Prentice Hall.
Santos, M.E., Castro-Caldas, A & De Sousa,L. (1998). Spontaneous complaints of long-term traumatic brain injured subjects and their close relatives, Brain Injury,12(9) 759-767.
Seligman, M. & Darling, R.B. (1989). Ordinary families, special children: A systems approach to childhood disability. New York: Clifford Press
Tolbert, W.G. (2001). Family in Crisis. Nursing Management, (32)5, 28-33.
129
