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Communication between children with cancer and their caretakers Ratjen, Björn 1989

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COMMUNICATION BETWEEN CHILDREN WITH C A N C E R AND THEIR C A R E T A K E R S 3 by B J O R N R A T J E N A THESIS S U B M I T T E D IN P A R T I A L F U L F I L M E N T OF T H E R E Q U I R E M E N T S F O R T H E D E G R E E OF DOCTOR OF P H I L O S O P H Y in T H E F A C U L T Y OF G R A D U A T E STUDIES Interdisciplinary Studies We accept this thesis as conforming to the required standard T H E U N I V E R S I T Y O F BRITISH C O L U M B I A June 1989 ® Bjorn Ratjen, 1989 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at The University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the Head of my Department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Interdisciplinary Studies The University of British Columbia 2075 Wesbrook Place Vancouver, Canada V 6 T 1W5 Date: June 1989 ABSTRACT The study examines interactions between children with cancer, their parents and hospital staff. Participant observation and interviewing techniques were used to gain insight into the perspectives of the three groups of persons involved. Various hospital staff members were followed through their daily routines and parents were extensively observed and interviewed. Children were observed during their first phase of the treatment in hospital using a case study approach. Extensive examples of interactions and scenes from the hospital setting are presented and analyzed. The changing role of participant observation is discussed and examined from the personal perspective of the observer. The understanding of the communication of each group which was generated showed many failures in mutual understanding during interactions. Well-meaning staff were often caught in organizational and hierarchical issues of the hospital setting and interpreted parent's and children's behaviour according to its usefulness for the application of treatment procedures. Parents tried to comply with hospital requirements, which seemed to represent their only hope for the well-being of their child, while at the same time they had to cope with their feelings in face of the suffering of their child. Children seemed to suffer from the direct consequences of the treatment as well as from the lack of meaningful explanations of the events, which led them to distrust communications. It is concluded that caring persons frequently fail to relate to the world of children with cancer, impeding a cooperative effort in the fight against the illness. ii ACKNOWLEDGEMENTS I would like to thank all members of my committee who supported my work in their own special ways (in alphabetical order): Dr. Frank Echols (Social and Educational Studies), Dr. Steve Foster (Educational Psychology), Dr. Helga Jacobson (Anthropology and Sociology), Dr. David Kendall (Chairperson; Educational Psychology and Special Education), Dr. Tony Le Page (Registered Psychologist), Dr. Mavis Teasdale (Pediatrics), Dr. John Yuille (Psychology). A very special thank you goes to hospital staff, parents and children who shared their personal thoughts with me. They made everything possible and provided me with many experiences. M y deep gratitude and acknowledgement is expressed to the children who gave me insight into their world and enabled me to be with them during many uphill battles. Bjbrn Ratjen iii INTRODUCTION It is not an easy task to communicate the complexity of a particular setting to someone else. Personal experiences are involved and sometimes moods and emotions express more than the spoken word. Structure is a necessary element in transmission of information and various ways have been chosen in an effort to reflect the processes of the hospital setting and the persons in it. A brief overview may help as a guide through the information: The First Chapter provides background and focus of the study which is followed by review of appropriate literature in Issues Concerning the Child with Cancer in the Literature. The next chapter Conceptualizations highlights the underlying theoretical concepts. Conducting the Inquiry explains the methodological approach of this study in general terms. A closer look at methodological issues arising from the observations of the individual groups is given in conjunction with the accounts of staff, parents, and children. This is in line with the process oriented character of the study and places issues in their proper context. The chapter Participant Observations - A Personal Account provides a personal view of the experiences which the researcher has made during the conduct of the study. Since the researcher has been the major instrument for data collection, this chapter informs about the processes which were involved in the conduct of the study and highlights personal experiences. It should also help to shed some light on the researcher's viewpoint when viewed comparatively with similar studies. Three groups of persons form the focus of the next three chapters: Hospital Staff, Parents and Families, and Children. These chapters - in the case of the hospital staff it also involves subchapters about the various subgroups are organized in a somewhat parallel way in order to facilitate comparisons between iv the different groups of persons. Patterns of information gathering and relationships as well as the perspectives of individual groups are already reflected in the structure of these accounts through respective subchapters. Actual scenes describe events in the hospital and illustrate interactions, however the names of the person have been changed in order to ensure their anonymity. Every one of those chapters and subchapters is concluded by a reflective account highlighting some issues concerning the observations of the persons involved. This should make the conduct of the study somewhat more transparent. It can also show some details about the atmosphere and the problems which arose during individual observation periods. The Last Chapter sums up the study, its concerns and its findings. The findingd of the respective subchapters are reflected and analyzed in the context of the study as a whole and its theoretical bachground. The whole report is interspersed with scenes (Images) from the setting and other relevant sources, which hopefully help to communicate some additional aspects of the atmosphere on the hospital ward. These scenes are direct accounts or quotations which are placed into a context without further comment. They are like windows and enable the reader to look at some issues which are important for the understanding of the context of interactions. v TABLE OF CONTENTS Abstract ii Acknowledgements iii Introduction iv 1. The First Chapter 1 1.1. The Beginning 1 1.2. The Search for Meaning 2 1.3. Interacting When a Child Has Cancer 3 1.4. Focus of the Study 4 2. Issues Concerning the Child with Cancer in the Literature 10 2.1. Terminal, Life-Threatening, or Chronic Illness 10 2.2. Attitudes Toward Death and Dying 10 2.3. Children and Death 15 2.4. Reactions to the Diagnosis 17 2.4.1. Impact on Parents 18 2.4.2. Impact on Children 21 2.4.3. Impact on Siblings 22 2.5. Awareness Context and Knowledge About Illness 22 2.6. 'Protective' and 'Open' Approach 25 2.7. Children's Awareness and Information 29 2.8. Hospitalization 33 2.8.1. Being in Hospital 33 2.8.2. Impact of Illness and Hospitalization on Children 34 2.8.3. The Roles of Health Professionals 36 2.9. The Various Perspectives 40 3. Conceptualizations 42 4. Conducting the Inquiry 51 4.1. Context of the Study 52 4.1.1. Phases of the Illness 52 4.1.2. The Persons Involved 53 4.2. A n Anthropological Approach: Participant Observation 55 4.3. Access 62 4.4. Fieldwork 64 4.4.1. The Setting 65 4.4.2. First Phase: Hospital Staff 65 4.4.3. Second Phase: Parents and Children 67 Parents 68 Children 71 4.5. Recording Procedures 72 4.6. Post Fieldwork Analysis 75 5. Participant Observation: A Personal Account 79 5.1. Stage 1: Preparations 79 vi 5.2. Stage 2: The Preliminary Field Work 81 5.3. Stage 3: The Formal Proposal 91 5.4. Stage 4: The Fieldwork 93 5.5. Stage 5: Analysis 101 6. Hospital Staff 102 6.1. Introduction 102 6.1.1. The Social Setting 102 6.1.2. Observational Approach 105 6.1.3. The Structure of Analysis 106 6.2. Hospital Teachers 106 6.2.1. The School Setting 107 6.2.2. Teaching Aims 108 6.2.3. Rewards 109 6.2.4. Teachers' Position in the Hospitals 110 6.2.5. Information I l l 6.2.6. Teacher and Children 115 6.2.7. Children's Attitudes 120 6.2.8. The Teachers' Perspective 120 6.2.9. Observing the Teachers 123 6.3. Nurses 126 6.3.1. The Nurses' Setting 126 6.3.2. Nursing Aims 130 Nurses' Rewards 133 6.3.3. Information 134 6.3.4. Nurses' Position in the Hospital 141 6.3.5. Nurses and Parents 145 6.3.6. Nurses and Children 146 Treatments 146 Casual Interactions 148 Understanding Children 154 6.3.7. The Perspective of Nurses 158 6.3.8. Observing the Nurses 161 6.4. Child Life 164 6.4.1. Child Life Workers in the Hospital 164 6.4.2. Aims 165 6.4.3. Rewards 167 6.4.4. Information 167 6.4.5. Relating to Other Hospital Staff 168 6.4.6. Child Life Worker and Parents 171 6.4.7. Child Life Worker and Children 173 6.4.8. The Perspective of a Child Life Worker 177 6.4.9. Observing the Child Life Worker 179 6.5. Physicians 182 6.5.1. Aims 182 6.5.2. Information : 183 6.5.3. Physicians Relating to Other Physicians 186 6.5.4. Plrysicians and Nurses 187 6.5.5. Physicians and Parents 188 vii 6.5.6. Physicians and Children 191 6.5.7. The Perspective of a Physician 192 6.5.8. Observing the Physicians 195 6.6. Therapists 198 6.6.1. Occupational Therapist 198 Aims 198 Information 199 Occupational Therapist and Children 199 Occupational Therapist and Parents 202 Relationship with other Staff 203 The Perspective of the Occupational Therapist . 205 Observing the Occupational Therapist 206 6.6.2. Physiotherapist 208 Aims 208 Information 209 Physiotherapist and Children 209 Physiotherapist and Parents 211 Relationship to other Staff 212 The Perspective of the Physiotherapist 212 Observing the Physiotherapist 213 6.6.3. The Perspectives of Therapists 215 6.7. Social Workers 216 6.7.1. Aims 216 6.7.2. Information 218 6.7.3. Social Worker and Parents 219 6.7.4. Social Worker and Children 225 6.7.5. Social Worker Relating to other Staff 227 6.7.6. The Perspective of the Social Worker 229 6.7.7. Observing the Social Worker 1 230 6.8. Other Staff 233 6.8.1. Technicians 233 6.8.2. Housekeeping Personnel 234 6.8.3. Psychologist 234 6.8.4. Dietitian 235 6.8.5. Volunteers 235 6.9. Staff Perspectives 237 6.9.1. The Medical Line of Authority 237 6.9.2. The Administrative Line of Authority 238 6.9.3. Complementary Line of Authority 239 6.9.4. Issues 239 7. Parents and Family 243 7.1. Introduction 243 7.1.1. The Case Studies 243 7.1.2. Observational Approach 249 7.2. Discovering the Illness 252 7.3. Reactions to the Diagnosis 254 7.4. Parents in Hospital 259 viii 7.5. information 263 7.6. Parents and Hospital Staff 266 7.6.1. Parents and Physicians 268 7.6.2. Parents and Nurses 271 7.6.3. Parents and Social Worker 274 7.7. Parents Relating to other Parents 275 7.8. Parents and their Children 278 7.8.1. In Hospital 278 7.8.2. After Treatment ' 281 7.9. Impact on the Family System 282 7.9.1. Grandparents 283 7.9.2. Siblings 284 7.10. Parental Perspectives 286 7.11. Observing the Parents 290 8. Children 293 8.1. Introduction 293 8.1.1. The Case Studies 293 8.1.2. Observational Approach 295 8.2. The Scenario 296 8.2.1. Diagnosis and Treatment 296 8.2.2. A Child's View 298 8.3. Children's Communications 300 8.3.1. Nonverbal Symbols 300 8.3.2. Verbal Symbols 304 8.4. Children's Understanding 306 8.5. Information 309 8.6. Procedures 319 8.6.1. Getting an IV 323 8.6.2. Lumbar Puncture (LP) 326 8.7. Children and Their Parents 336 8.8. Children and Hospital Staff 338 8.8.1. Children Relating to Nurses 339 8.8.2. Children and Physicians 341 8.8.3. Children and Child Life Worker 343 8.8.4. Other Staff 344 8.9. Children and School 345 8.10. Children Relating to Children 349 8.11. The Perspective of Children with Cancer 352 8.12. Observing the Children 358 9. The Last Chapter 365 9.1. Interacting in a Hospital Setting 368 9.2. Interpretation of Meaning 374 9.3. Coping Processes 379 9.4. Adapting to the Suffering 382 9.4.1. Implications 389 10. Appendices ; 392 ix 10.1. References 392 10.2. Consent Letter Physicians 426 10.3. Consent Letter for Parents 429 10.4. Children's Consent 431 10.5. Acronyms and Medical Expressions 432 x LIST OF IMAGES I M A G E 1: The Five Stages of Grief 13 I M A G E 2: To the Children 31 I M A G E 3: Professional Attitudes 142 I M A G E 4: Not a Good Morning 159 I M A G E 5: Do You Really Think They Are Alright? 172 I M A G E 6: In the Special Care Nursery 200 I M A G E 7: Telling Mother 262 I M A G E 8: Lullaby for My Dead Child 289 I M A G E 9: Children's Talk 299 xi 1. THE FIRST CHAPTER 1.1. THE BEGINNING At first there was only the personal experience with cancer. It was the experience of an close observer, because I did not suffer from the disease myself but it was my brother who eventually died from it. Nevertheless there were the emotions, the agony, the feelings of sadness and helplessness. I recall the death verdict by the surgeon who nevertheless erred two years in his prognosis, which confused me enough to trigger a search for answers. I witnessed the effects of treatment and hospital environment. I experienced changes in family relations. Then I began to look for explanations and started to read about the experiences of people in similar situations. Two main issues really stood out. One was the search for meaning, an answer to the question why, and to find some way of coping with the situation and the other was the interaction of a family with the medical community, especially within the hospital. Both issues changed profoundly my thinking and behaviour. The search for meaning meant that one had to come to grips with concepts of the illness and the fears which they evoked. The fear of loss triggered grieving processes while at the same time new information had to be digested. Death was something I had never experienced as closely although I had seen people die before. I remember that at times I thought it was all a bad dream and in the next moment I wished to see my brother dead to save him from the suffering. The search for meaning became a circular motion. Often the individual parts did not seem to make sense, but nevertheless procedures were established and implemented in hope for the best outcome. 1 The First Chapter / 2 There was heavj' reliance on sometimes conflicting medical advice. Medical technology seemed to be the last straw. Medical terminology and treatment procedures began to preoccupy thinking and dominate family routines. Advice from physicians was considered carefully and hospital routines often dictated personal choices. 1.2. THE SEARCH FOR MEANING The experiences catalyzed my investigative interest. At first I looked at the threat of death and dying which is something all those involved with cancer have to come to grips with. The threat of death evokes thoughts about dying which are embedded in personal beliefs and cultural interpretations. I noticed that grieving does not only take place after the event, but begins with the perceived threat of death, which comes with the diagnosis. I remember reading "On Death and Dying" (Kubler-Ross, 1969) and waiting for signs of different phases. The actual experiences as an observer of illness and treatment, however, were usually stronger than theoretical considerations. In the end, when it actually happened and my brother died, everything was there at once: relief, sadness, anger, and confusion. I also felt troubled because I was unable to understand him and his wishes during the last hours. After the dust had settled and I had begun to continue my life, I happened to see some children with Leukemia during a presentation in a medical seminar at the university. The search for meaning was on again and I wrote my masters thesis about children's death and dying. I investigated cultural and pedagogical aspects which influenced attitudes to their fate. I found that they were very often wrapped into communicative blankets which in fact seemed to The First Chapter / 3 leave them alone with their coping processes. All this pointed even more strongly at the unsettled question: what really happens with communication and relationships under the strong influence of medical authority in a hospital setting? 1.3. INTERACTING WHEN A CHILD HAS CANCER Communicating and achieving mutual understanding is a complex issue which has been in the focus of an ever increasing amount of publications on communication. The added complexities of childhood cancer complicate interactions by individual emotional overlays as well as differences in perception which relate to the various roles of the people involved. Initially I wanted to distinguish between three different groups of persons who are usually involved in interactions when children have cancer, medical staff, their parents and family, and of course the children themselves. Interactions between these groups build the framework for coping. As we will see in the next chapter the literature examines interactions from various viewpoints. Some parents wrote very personal and illustrative accounts of their experiences (e.g. Becker, 1977; Ludwig-Klein, 1980) The bulk of the literature, however, is written by professionals who emphasize several issues. On the one hand attempts have been made to interpret children's behaviour and their reactions to the illness (e.g. Biirgin, 1978; Spinetta, 1977; Kellerman, 1980) and others have looked at family issues (e.g. Mann, 1974; Desmond, 1977; Pearse, 1977; Christ and Flomenhaft, 1984). Considerable thought has also been given to the question of information and the adjustment to it (e.g. Share, 1972; Slavin et al., 1982) However, rarely have researchers looked at the ongoing The First Chapter / 4 dynamic interactions during the treatment and the degree of mutual understanding which is achieved on the basis of the perception of those involved. What is actually communicated between families, their children with cancer and the hospital staff, and how is it understood? How are messages actually perceived by the different persons involved? These questions centered around the child led to the current research. 1.4. FOCUS OF T H E STUDY It is the view of symbolic interactionism that persons possess a self which is expressed in interaction with others and enables the individual to organize own behaviour toward others (Blumer, 1969; Denzin, 1973). This study focuses on the expressions of self in the context of pediatric cancer. Those expressions vary according to the setting where interactions take place, the situational roles and functions of the persons involved, and the emotional context. The symbols used to communicate meaning are analyzed on the basis of those variables. The context of meaning involves the interactions of three groups of persons: hospital staff, parents, and children. This study strives to analyze the evolution of understanding between those three groups as dynamic and interactional processes from an inside and outside perspective. The inside perspective refers to the understanding which persons develop and express during interactions. The outside perspective addresses an analysis from an observer's viewpoint which can generate an additional understanding on a meta-level. This exploratory study also acknowledges the dynamic character of interactional processes in its methodology. The researcher follows the whole way from the development of personal understanding to the expressions of meaning The First Chapter / 5 which take place during interactions. The processes of data collection, which have an influence on interpretations, are themselves subject to analysis. The first phase of the illness (between diagnosis and first remission) is chosen as the primary target, because it is the initial contact with the illness. This evokes many reactions in parents and children which require the development of appropriate coping mechanisms. It has also been reported to be a time of extreme stress for children and their families (Fife, 1980; Christ et al., 1984; Northouse, 1984). The interest in communication involving children with cancer stems from the experience of the researcher and others that mutual understanding can have a great impact on the coping processes. Mutual understanding means that two or more persons achieve a common basis of understanding by relating to each other with communicative means which they are able to interpret in the same way. This may also be explained with reference to the awareness context where mutual understanding may be created if persons can relate to their respective awareness context.1 The literature about the psychosocial effects of childhood cancer often refers to a functional context of understanding, i.e. whether or not parents understand the diagnosis. However, communication is a dynamic process which involves different personalities, role relationships, and situational context. It involves the transfer of meaning with the help of interpretable symbols. Therefore communication and the interpretation of meaning must be understood in relationship to the perspectives of the three groups involved: hospital staff, parents and family, and the children with cancer. A n analysis of their communication must relate to their perspectives and include a careful exploration See chapter "2.5. Awareness Context and Knowledge About Illness". The First Chapter / 6 of the interactive processes within the hospital setting. This leads to three general questions: 1. How do persons involved with children with cancer in a hospital setting interact with each other? 2 . What is the mutual understanding of meaning among the participants in interactions? 3. How does communication in the hospital setting relate to the coping processes? These general exploratory questions involve different persons and can be broken down into several components which leads to a set of more specific questions. Question 1: The time span of interactions in this study covers the period of hospitalization after a diagnosis has been established until a first remission is achieved. It has been mentioned that an interpretation of communication must involve knowledge about the interactive context. The influence of the setting with its behavioural rules has to be taken into account as well as the various means of expression which the interacting persons choose to communicate. The question "how" relates to form and content of interactions. It is important to study the means of communication of all persons involved - hospital staff, parents (and family), and children - because they form the framework of interactions. This can be addressed with the following question: • How do persons in a hospital setting express themselves? This question addresses the kind of symbols which are used in relation to the context of interactions. It is of interest which means are used for communicating with each other and how those are being utilized. In order to understand their communication one has to analyze expressions and their intentions. This leads to The First Chapter / 7 another question, which is applicable to those three groups: • What levels of communication are used in interactions in the hospital setting? Different levels of communication may communicate different messages, i.e. voice and gestures may communicate anxiety while words try to convey factual information. This may be illustrated by focusing on a particular information, which can be pursued as it is passed on from one person to another. Illness related communication is of particular interest because it is the revolving point of many activities in this context. • How is information illness related communicated? This question refers to communication among members of one group and between one group and another, e.g. nurses and parents. The constellation of interactions may also change the content of communications and it is of interest to learn more about the focus of interactions and where they take place. • What is the focus of communications in interactions among members of one group and in relation to the other persons involved? The answer to this question may help to illustrate where and how important information is being passed on to others. Additional understanding may be achieved if the approaches toward an interaction and intentions which influence the behaviour are clarified. In other words: • What is the intention of communication within a specific group and in communication with others? This question addresses the relationships of persons within one group and to other persons outside. The intention has to be examined from the perspectives of the parties involved, which may then generate an understanding of their The First Chapter / 8 viewpoint and how it relates to the interpretation of meaning by another group. Question 2: Successful communication results in mutual understanding. This requires a good perception of the symbols which are used to communicate meaning. Meaning is attached to symbols within a personal and situational context. 2 Understanding the meaning of communicated messages requires knowing how to interpret other's symbols. After one has looked at the different means of communication which are used among the persons involved, it would be interesting to learn more about the levels of mutual understanding. This relates to the degree of understanding members of one group develop of members of another group as well as to the awareness they have of each others interpretations. On the one hand one would like to know: • What are the levels of understanding between the different groups? The levels of understanding cannot be measured in absolute terms. The question rather refers to a comparison between the understanding which one group has of itself and the interpretation of another group. In addition the question arises: • What is the awareness of each others interpretation of meaning? The answers to these questions may produce insight into the relationships between the different persons in a hospital setting. It is of special interest when lack of mutual understanding may lead to a breakdown of communication. • If there is misinterpretation of communications, how and why does it happen? Information about misinterpretations can only be gathered when a thorough knowledge of the perceptions of the persons involved can be achieved. Question 3: Part of the literature indicates that communication can have 2 See also the considerations in chapter "3. Conceptualizations". ' The First Chapter / 9 considerable impact on coping, i.e. "open" versus "protected" approach. Although some effects (i.e. isolation) have been mentioned the direct impact of communication on coping has yet to be assessed. • What are the effects of communication on coping for children, parents and hospital staff? Coping has individual and role components. Coping relates on the one hand to the personal management of difficult situations and on the other it relates to the performance according to a specific role. Coping of hospital staff for example may be regarded as adapting according to professional requirements. The hospital organization may also prescribe certain ways of coping (Menzies, 1970) which influence communication. There is a mutual influence and one may also ask: • How do coping strategies influence communication? Since coping with the situation is very important the study may also reveal strategies for improvements. • What are the improvements which can be made to facilitate coping with the situation? This addresses implications for individual behaviour as well as for the organizational constitution of the setting. In addition it may point out directions for future research. The main concern in this study centers around the well-being of the child. It is the aim to generate a more thorough understanding of the interactive processes in a hospital setting. If understanding prevails then beneficial adaptations for individual needs can hopefully be found. Before the investigation can be conducted we should take a look at present knowledge about some of the important issues in the environment of children with cancer. 2. ISSUES CONCERNING THE CHILD WITH CANCER IN T H E LITERATURE 2.1. TERMINAL, LIFE-THREATENING, OR CHRONIC ILLNESS Literature on children with cancer is found under different headings. This is a reflection of the progress in medical treatment, which has increased the survival rates of many forms of the disease. The focus of research about the psychological impact of the illness has also shifted toward a more long term strategy of coping, preparing to live with cancer (Spinetta et al., 1981). Nevertheless the issue of death is relevant because many still die from cancer. As Dongen-Melman and Sanders-Woudstra (1986a: 166) note: "As long as cancer is not a completely curable disease, and it is unpredictable whether a child will die or will be cured, aspects directly related to the loss of the child will be present." A confrontation with death is created, not only when someone is actually dying from cancer, but also in a perceived sense when a diagnosis of cancer is regarded as a real or possible death threat. It is part of the stigma (Goffman, 1963) of the illness which establishes a link to personal and cultural attitudes toward death and dying. 2.2. ATTITUDES TOWARD D E A T H AND DYING Attitudes toward death depend on cultural and individual backgrounds (Aries, 1974; Fremantle and Trungpa, 1975). Death cannot be considered as a purely individual event. The dying person is a social being with many interrelations with the social environment, relations to individual persons and relations to 10 Issues Concerning the Child with Cancer in the Literature / 11 society with respect to social functions (Fuchs, 1979). The personal confrontation with a dying person is minimized for the general public, because it mostly takes place in hospital. David Sudnow (1967) described how health professionals avoid the confrontation with death. In the hospital setting death is again dealt with by specialists who, therefore are attached with a certain stigma in the health care setting. When Elisabeth Rubier-Ross started her work on death and dying she faced unforeseen problems (Kubler-Ross, 1971): "How naive I was: I discovered that there was not a single dying patient in a 600-bed hospital! I went from ward to ward and told the nurses and the doctors that I would like to talk to a terminally ill patient. "What about?" "About dying." "Oh, we have nobody dying." If I pushed, they said, "He's too weak" or "too sick" or "too tired" or "he doesn't feel like talking". A lot of not only denial and rationalization but also hostility and some very aggressive behaviour emerged. One nurse asked me, "Do you get a kick out of telling a 20-year-old that he has one week to live?" And, of course, there was much well-meant protectiveness for the patients." Although death seems to be put aside as a taboo in a medically oriented world, an increasing amount of literature about many aspects of death and dying can be found (Fulton, 1977; Simpson, 1979). This amount makes Michael Simpson (1979) in his annotated bibliography even wonder if death really is a taboo topic. Even though there. is an increasing amount of information available in literature and other media, it cannot replace the personal experience. For most people death seems to be happening somewhere else. Thus a diagnosis of cancer provides a sudden realization of the imminence of death. After the initial phase of shock, reactions like disbelief, denial, anger, Issues Concerning the Child with Cancer in the Literature / 12 bargaining (guilt), and depression have been observed. These feelings have been described as a form of anticipatory grief. Erich Lindeman (1944) first used this term, when he described the reactions of parents to the threat of the loss of their child after a major accident in which several children of a community were killed. Later studies revealed that the expectation of a loss can also produce these reactions (Friedman et al., 1963; Green and Solnit, 1964; Chodoff et al., 1964; Schoenberg, 1970) as a preparation for the threatening incident. One can also assume that most of the people involved with someone who has a life threatening illness or seems to be dying go through similar reactions, including the health professionals involved in the care (Teyber and Littlehales, 1981). The reactions involved are very similar to the ones Elisabeth Kiibler-Ross described in her studies with persons who are actually dying. She described five different stages (1968): 1. Denial and Isolation: "not me, it cannot be true." 2. Anger: "Why me?" 3. Bargaining: "If God has decided to take us from earth and he did not respond to my angry pleas, he may be more favourable if I ask nicely." 4. Depression: reactive depression, preparatory depression. 5. Acceptance: final rest before the long journey. Kiibler-Ross herself and others have noticed that these stages do not necessarily appear as a consistent sequence of reactions (Kiibler-Ross, 1969) and some of the research concerning stages of dying seems to show inconsistencies (Schulz and Aderman, 1974). Others have added additional stages and substages and thus expanded the scope of reactions, e.g. Sporken (1973), who divided stage one into implicit and explicit denial. In addition it has to be considered if these stages Issues Concerning the Child with Cancer in the Literature / 13 IMAGE 1 Linda Pastan The Five Stages of Grief The night I lost you someone pointed me towards the Five Stages of Grief. Go that way, they said, it's easy, like learning to climb stairs after the amputation. And so I climbed. Denial was first. I sat down at breakfast carefully setting the table for two. I passed you the toast you sat there. I passed you the paper - you hid behind it. Anger seemed more familiar. I burned the toast, snatched the paper and read the headlines myself. But then they mentioned ydur departure, and so I moved on to Bargaining. What could I exchange for you? The silence after storms? M y typing fingers? Before I could decide, Depression came puffing up, a poor relation its suitcase tied together with string. In the suitcase were bandages for the eyes and bottles of sleep. I slid all the way down the stairs feeling nothing. And all the time Hope flashed on and off in defective neon. Hope was a signpost pointing straight in the air. Hope was my uncle's middle name, he died of it. After a year I am still climbing, though my feet slip on your stone face. Issues Concerning the Child with Cancer in the Literature / The treeline has long since disappeared; green is a color I have forgotten. But now I see what I am climbing towards: Acceptance written in capital letters, a special headline: Acceptance, its name in lights. I struggle on, waving and shouting. Below, my whole life spreads its surf, all the landscapes I've ever known or dreamed of. Below a fish jumps: the pulse in your neck. Acceptance. I finally reach it. But something is wrong. Grief is a circular staircase. I have lost you. (in Moffat, 1982) Issues Concerning the Child with Cancer in the Literature / 15 are really typical for dying persons only or if they represent responses to other threatening incidents as well. 2.3. CHILDREN AND DEATH Children react to fears and threats to their lives very differently according to their age. Death is a different issue for them and might not even be a concern at the first stages of cancer. Maria Nagy (1948) observed a number of children in 1946 and concluded from her interactions with them three stages in the development of the understanding of death: 1. There is no death (0 - 4 years). 2. Death is a man ( 5 - 9 years). 3. Death is the cessation of corporal activities (older than 10 years). Although her conclusions rely on some unclear methodological measures, and it has to be taken into account that her research took place just after the second world war when experiences might have influenced children's perceptions of death considerably, she has been quoted very frequently and later authors came to similar conclusions. A modified version according to Wolfgang Larbig (1974) including the results of numerous studies conducted by Heuyer et al. (1955), E . Stern (1957), etc. looks as follows: 1. 4-6 years: no emotional attitude toward death. No idea of life after death or why people die. 2. 6-11 years: rare emotional attitude toward death (i.e. sorrow, fear). 3. 10-14 years: attitudes toward death approach adult levels. Research in this area is mainly based on Piaget's theories of development. Richard Lonetto (1980) described three different stages as a result of his Issues Concerning the Child with Cancer in the Literature / 16 research in which a large amount of the existing literature is included: 1. Children from three through five years: "The drawings of these three-to-five year olds show their concerns about the physical features of death and the dead, the condition of the dead, and separation and abandonment. They are generally supportive of earlier research findings. The drawings seem to suggest ways of dealing with aging and death, and show a tendency toward humanizing the unknown, especially if the unknown takes the form of a monster. Also recorded in their drawings is a good deal of confusion of "the dead" with "death". The drawings of children between the ages of three and five indicate that methods of dying (by shooting or stabbing are not as frequently perceived as the methods of separation (kidnapping, hiding, and so forth) or the condition of the dead (standing or lying down)." (p. 78) 2. Children from six through eight years: "Death for a child from six to eight years old is personified, externalized, and can be avoided if one sees death in time. Death is not yet finalized; rather, it assumes various external forms (skeletons, ghosts, the death-man). The child is expressing a conceptual belief that places emphasis on the separation of internal, and external agents. During theses years, the child also shows concern about the ceremonial rites associated with the dead. Interest and anxiety appear • about funerals and burials." (p. 100) 3. Children from nine through twelve years: "The drawings and comments of 9-to-12 year olds display both uniqueness and common concerns. In terms of the unique elements associated with each age level, we find the 9 year olds show concern over the deaths of particular people, with emphasis upon the deaths of the grandparents. These children are able to incorporate their experiences into their interpretations of death; thus, death becomes related to old age, illness, and disease. These children also show an interest in the condition of the dead. The 10 year olds are troubled about the gloom, doom and pain imposed by death. ... Eleven year olds know that death is inevitable and desire a painless death. Some 12 year olds represent death in abstract terms and show a distinct lack of activity in their drawings of death. The common concerns shown across the age groups are seen in children's expressed awareness of self-mortality, in their distinct fears of death, in their interests in the rituals of burial, and in their feelings about the inevitability of death." (p. 156-157) Issues Concerning the Child with Cancer in the Literature / 17 Although cancer does not necessarily result in death, it does bring up 0 powerful feelings about death. This is especially true for some parents. Natterson and Knudson (1960) state about the mother-child relationship: "The threat of death to the child poses a symbolic threat of death to the mother ... In a sense, the mother faces death, experiences it, and survives (p. 461)." Children seem to react initially more to the immediate threats of the treatment and have to experience the progress of the illness in themselves and others before they link their state to dying (Bluebond-Langner, 1978). With their experiences they seem to understand the implications very well. It can create a gap in communication when adults think that younger children are not concerned about death because they do not understand its implications anyway. As John Spinetta (1974) notes: "The general argument is as follows: Children under 10 do not speak overtly of death; besides, they are not yet old enough to be capable of understanding the concept of death so they must not be worried about the fatal nature of their illness." The attitudes towards death which surround the child nevertheless have an impact on the communication which takes place once the diagnosis has been established. 2.4. REACTIONS TO THE DIAGNOSIS The diagnosis of cancer in. a child has a strong impact on the family, especially the parents. Parents are usually the first members of the family who are told by a physician about the diagnostic findings. Their reaction filters down to their children and other relatives. Issues Concerning the Child with Cancer in the Literature / 18 2.4.1. Impact on Parents Parents have described the diagnosis "as the hardest blow they had to bear throughout the course of illness" (Binger et al., 1969: 114). Many things that they have heard about cancer will come into their minds and the fear of losing their child will arise. Their first reaction is a state of shock (Solnit and Green, 1959; Burgert, 1972), which is followed by disbelief, anger, denial, guilt, etc. This state of shock means that their capacity of receiving new information is very limited (Myers, 1983). Sometimes parents do not remember anything else but the diagnosis of cancer from this communication with a physician. As Donald Brunnquell and Maria Hall (1980: 42) have noted: "Parents have reported recalling not a word from long meetings, aside from diagnosis, even though points were frequently repeated." The information requires time to "sink in". They need time to be able to adjust. The way in which the interaction takes place and the amount of empathy of the informing physician can also have a great influence on the understanding (Myers, 1983). Parents find their lives are suddenly changed. The expectation that their relationship with their child will go on forever is threatened and feelings of loss and separation anxiety lead to a crisis situation (Mann, 1974; Sourkes, 1977). They have to cope with this new situation. Coping involves all the strategies necessary to keep one's psychological stability and, as Chodoff et al. (1964: 744) note: "Coping can be thought of as consisting of two aspects, an externally directed one, judged for effectiveness in social terms, ... and an internally directed or defensive aspect, which serves to protect the individual from disruptive degrees of anxiety and which is judged for Issues Concerning the Child with Cancer in the Literature / 19 adequacy by the degree of comfort resulting." These two aspects can be a source of conflict when there is a contradiction between internal coping requirements and demands for specific external behaviour. It is often overlooked that successful coping also requires a relaxation and a positive attitude in order to recharge energy (Powell, 1974; Zevon at al., 1981). Reactions toward the diagnosis can vary not only due to individual differences, but also due to the cultural context which influences the view of the illness (Anderson, 1981; Friedman, 1985; Vilaro, 1985). The initial shock and the closure against more information also has a denying function (Chodoff et al., 1964) and can lead to behaviors such as keeping oneself busy, isolated socially, etc. Denial, however, can also have an isolating effect on their child. If the parents are not able to acknowledge their child's reality, they have little in common. Their reactions might be part of an anticipatory grieving process. This is an adaptation process which takes place in the parents after they have been told the diagnosis. It has been mentioned above that this can influence parental perception of communication as they are unable to digest much information. It also can have an isolating effect on the child because it means that the parents are more preoccupied with their own feelings and in addition they seem to advance the possible loss of their child into their present reality. Green and Solnit (1964) have described a reaction to the threatened loss of a child as a vulnerable child syndrome. This involves symptoms of: 1. Difficulty with separation: This frequently includes sleep problems, when the parent is afraid the child might die during his sleep. 2. Infantilization: the overprotective and overindulgent parents are unable to set disciplinary limits; the child in return becomes overdependent, disobedient, Issues Concerning the Child with Cancer in the Literature / 20 irritable, and uncooperative. 3. Bodily overconcerns: the parents become overconcerned with minor infections, color of the skin, and keep a close check on the child, who shows headaches, infantile fears, and hypochondrichal complaints. 4. School underachievement: child and mother share an unspoken agreement that the child is only safe when the mother is present. Hospitalization of their child with cancer poses a threat to the parental role. Care seems to be taken out of their hands and they seem to lose control over the well being of their child (Brunnquell, Hall, 1980), which increases their feelings of helplessness and incompetence. Their self-esteem is seriously challenged and their child seems already be taken away by the new hospital environment. Dorothy Marlow (1977: 86) lists, seven causes of parental anxiety: 1. Fear of strange environment in the hospital; 2. Fear of separation from the child and fear that the nurses may be unloving or that the}7 are able to do so much for him, that they will take his love from them; 3. Fear of the unknown and what will happen to the child immediately and in the future; 4. Fear that the child will suffer; 5. Fear that the condition is infectious and may spread to other family members; 6. Fear of unbearable financial obligations incurred through the illness; 7. Fear that society will look upon the illness as a reflection of something wrong with the child's parents. Some authors have tried to deal with aspects of parental needs; however, the reports have mostly been written by health professionals, often on an anecdotal basis. The few reports written by parents provide very personal and often dramatic accounts (e.g. Becker, 1974; Ludwig-Klein, 1980). In addition some efforts have been made to involve parents in the teamwork of care (Adams, Issues Concerning the Child with Cancer in the Literature / 21 1979) and integrate some of their reactions (Friedman et al., 1963; Kreuger et al., 1981; Blau et al. 1983). Parents are emotionally involved, find it difficult to express themselves and "are sensitive to study for study's sake and "emotional vultures", a term used by a mother to describe persons only interested in her reactions to the child's leukemia" (Mann, 1974: 87). It has been noted that parents have their own viewpoint and may view issues quite differently from medical staff (Chesler and Barbarin, 1984). Parents have various needs for support during the course of the illness, as many authors have noticed (Ross, 1978; Kreuger et al., 1981; Pichler et al., 1982b; Dongen-Melman et al., 1986b). Good communication seems to be essential, especially within the family. Verwoerdt (1966: 135) concluded: "During the time of such a crisis, effective communication between husband and wife are particularly essential. A great deal of support is needed by each spouse, one from the other ...the stability of the entire family unit depends upon the strength of the parental relationship." The difficulties in coping with own feelings are likely to be passed on to the child and have an effect on the communication and relationship. 2.4.2. Impact on Children Initially the child is only indirectly concerned with the diagnosis, but its impact is perceived through parental reactions and through its consequences: medical treatment and hospitalization, which will be discussed later. 3 It is important to note, however, that a discrepancy can be created at this point between parents See subchapter: 2.8. Hospitalization. Issues Concerning the Child with Cancer in the Literature / 22 who react to information and their sick child, who experiences the physical and emotional impact much more directly. The parental coping behaviour and their distress may also have an impact on the coping response of the child (Blotcky et al., 1985). 2.4.3. Impact on Siblings Siblings experience the consequences of the diagnosis indirectly. They perceive the reaction of their parents and can see that their brother or sister is suddenly taken away. Siblings may also experiences role changes in the family when they are more on their own or have to assume more caretaking roles within the household. In addition everythings seems to revolve around the sick child which can make them feel left out, especially if they do not receive sufficiant information. The possibility of own illness or death is highlighted which may create fears, but also the wish to be able to do something like trade places (Koch-Hattem, 1986). The adaptive responses of siblings have become a focus for research only in recent years (Cohen, 1985; Richmond, 1985; Cimini, 1986; Perez-Ortega, 1986; Asada, 1987; Walker, 1987). A l l this highlights the needs of support for all family members and the importance of open communication between all who are involved (Adams-Greenly et al., 1986; Bush, 1987). 2.5. AWARENESS CONTEXT AND KNOWLEDGE ABOUT ILLNESS Communication also has to be seen in the awareness context which Barney Glaser and Anselm Strauss have described. They defined this term (1965): "By the term awareness context we mean the total combination of Issues Concerning the Child with Cancer in the Literature / 23 what each interactant in a situation knows about the identity of the other and his own identitj' in the eyes of the other." They distinguished four different types of awareness (1964): " A n open awareness context obtains when each interactant is aware of the other's true identity and his own identity in the eyes of the other. A closed awareness context obtains when one of the interactants does not know either the other's identity or the other's view of identity. A suspicion awareness context is a modification of the closed one: one interactant suspects the true identity of the other or the other's view of his own identity, or both. A pretense awareness context is a modification of the open one: both interactants are fully aware but pretend not to be." Strauss and Glaser (1970) looked at the different awareness contexts with dying patients. They found five structural conditions for the closed awareness context: "First, most patients have little or no experience in recognizing the signs of impending death. A second structural condition is that American physicians ordinarily do not tell patients outright that death . is probable or inevitable. ... A third structural condition is that families tend to guard the secret, thereby confirming what the physician has announced. ... A fourth structural condition is that of the organization of hospitals and the commitments of personnel who work within them by which medical information is concealed from patients. ... A fifth structural condition, perhaps somewhat less apparent, is that ordinarily the patient has no allies who reveal or help him discover the fact of his impending death." There are some differences of course which have to be noted with regard to children with cancer. The progress of medical treatment does not justify to look at every child as if he was dying. This can also lead to a strengthening of the closed awareness context because there always seem to be chances which nourish hope, even when reality tells a different stor3\ Another factor, which Myra Bluebond-Langner (1978) has described, is the flow of information on the ward. Children seem to get a considerable amount of Issues Concerning the Child with Cancer in the Literature / 24 information from their peers, and the death of another patient gains special attention. This has already been noted by Emma Plank (1971). As Waechter (1971), Spinetta et al. (1973) and others have shown, children are aware of the illness and its impact although the topic may be avoided in communications. Thus the closed awareness soon becomes suspected or pretense awareness. Myra Bluebond-Langner (1978) described the efforts which have to be made to stay at the mutual pretense awareness level which seems to be the most common with children who have cancer. Glaser and Strauss (1965: 72ff) noticed a set of rules which have to be applied to keep the interactions at this level: "One rule is that dangerous topics should generally be avoided. There is, however, a qualifying rule: Talk about dangerous topics is permissible as long as neither party breaks down. A third rule, complementing the first two, is that each actor should focus determinedly on appropriately safe topics. A fourth interactional rule is that when something happens, or is said, that tends to expose the fiction that both parties are attempting to sustain, then each must pretend that nothing has gone awry." In addition the parties must strive to keep the interaction normal and brief. And as Myra Bluebond-Langner (1978: 206) stated: "When the rules become impossible to follow and the breakdown of the mutual pretense appears imminent, avoid or terminate the interaction." This means that there is a constant threat to isolation. The mutual pretense awareness may also lead to a double-bind communication (Erickson, Hyerstay, 1975), when different messages come across at the same time. A person might say: "you are doing fine", which can also mean: "I don't want to talk about your illness". Verbal and nonverbal messages can be contradictory and therefore create a double-bind situation. The child as a patient, however, might have to Issues Concerning the Child with Cancer in the Literature / 25 communicate in this way with the adults if s/he wants to communicate at all. It also has been shown that commonly used phrases in a hospital can be interpreted very differently (Wile, 1981), and if no communication is allowed to clarify the matter, then it will only increase the isolation. 2.6. 'PROTECTIVE' AND 'OPEN' APPROACH Basically two approaches have been described in the literature: the protective approach, favours shielding the children from knowledge of the disease, and the open approach, which means the diagnosis should be communicated to the children in an appropriate way as soon as possible (Share 1972). A concept of hope seems to be the driving force behind the protective approach when Emma Plank (1964) stated for example: "Life but not death is children's business. When a child who may conceivably die during hospitalization brings up the question of the possibility of his own death, we assure him with great conviction and • help him to deny the possibility." Three different reasons seem to form the rationale of the protective approach: 1. The child does not have enough understanding of the impact. 2. The child shall not be burdened with the knowledge of the limitations of his life. 3. Dealing with the implications of the illness only means a higher level of anxiety for the child. A n approach with controlled emotions means the safest way to ensure the well-being of the child. Howell (1966) stated for example: "One of the ways that this (helping the family to control emotions) can be done is by challenging the family to protect their child from Issues Concerning the Child with Cancer in the Literature / 26 the knowledge that his life span is limited. There is no need for a child to bear the burden of knowingly facing death: the parents can save him this (p. 3)." This approach also helps to protect a defense mechanism against a unmanageable anxiety as Evans (1968) stated: "One often deals with fears (about death) by suppressing or rejection and this can be very effective. By open discussion, this excellent defense mechanism is destroyed (p. 138)." However, it has to be considered that the child is well aware that something serious is happening, although s/he might not know the name of the illness immediately. Vernick and Karon (1965) state: "When the physician gives the fateful news to the parents, the child immediately "knows" that s/he has something very serious because his/her entire environment changes. His/her parents, no matter how hard they try, cannot conceal their own grave concern. The child quickly senses that the people whom s/he had come to trust and love are now keeping something from him, something frightening (p. 395)." Emma Plank acknowledged in a later book (1971), in which she gave examples of communication with children about death on a hospital ward, that the news about a death spreads faster then the staff was aware off. Vernick and Karon (1965) had already argued for a better communication with respect to the illness to reduce fear and anxiety. They stated that considerable effort had to be expended to keep the diagnosis secret, and they noticed relief when communication about the illness could finally take place. Thus they shifted the focus of the question if a child shall be told s/he has leukemia: "Such a proposition merely begs the question for the basic issue is not whether to talk to the child about his serious concerns but how to talk to him (p. 393)." Issues Concerning the Child with Cancer in the Literature / 27 Soon afterwards concern was expressed about the aftermath of telling the diagnosis, and about the impact on the relationships of children with parents, relatives, and friends (Agranoff, Mauer, 1965). However, Eugenia Waechter (1971) contradicted the protective approach and showed with projective tests that children are in fact aware of the closeness of their death. Spinetta, Rigler, and Karon (1973) came to similar conclusions when they transformed Eugenia Waechter's approach into a three-dimensional study of space the children gave to the persons around them. Other studies even found a positive long-term effect of the open approach in the adjustment of cancer survivors, which becomes more and more important with the increasing successes of medical treatment (Binger et al.,1969; Slavin et al. 1980). However, the term adjustment is not always clarified sufficiently. Does it mean the visible absence of extreme behaviors, or does it include the internal coping processes of the individual according to his/her situation? The protective approach seems to have a very serious impact on the child's relationships. Rather than giving comfort it means that suspicion about communication in general is increased, because the child senses something is wrong, but the people s/he trusts are withholding important information. This reduces trust in the relationship between the child and the persons s/he communicates with. Martin (1968) stated: "The obvious paradox in verbally stating that there is nothing to worry about while non-verbally denying this statement with anxious facial expressions or body gestures not only undermines the child's confidence in the communicator but may also undermine his confidence in his own vulnerability....When this type of paradoxical and evasive communication is given to the child by significant adults in his environment, all communication soon becomes suspect in the eyes of the child (p. 41, 71)." Issues Concerning the Child with Cancer in the Literature / 28 The child finally has to draw his/her own conclusions about illness and his/her experiences (Vernick and Karon, 1965; Bluebond-Langner, 1978). S/he might consider it as a punishment for something s/he has done wrong (Schowalter, 1970), or his/her interpretations about medical and other procedures might only increase his/her general anxiety (Prugh et al., 1953). It is no surprise that adults develop their own rationalization and try to "protect" the child from the information which decreases the amount of meaningful communication. Binger et al. (1969: 115) state about the impact of the effort to protect the child: "As the parents attempted to protect their children from the concerns of the illness, older leukemic attempted similarly to protect their parents; the children who were perhaps the loneliest of all were those who were aware of their diagnosis but at the same time recognized that their parents did not wish them to know. As a result, there was little or no meaningful communication. No one was left to whom the child could openly express his feelings of sadness, fear or anxiety." As Lynda Share (1972: 198) concluded: "The adult, as a result of lack of meaningful communication with his child, becomes increasingly unable to accurately perceive, assess, and respond to the child's inner experience. The child, in turn, responds to the adult's apparent "unawareness" with further withdrawal, accompanied by feelings of loneliness and increasing anxiety." This may be compounded by the medical treatment of cancer which usually involves a series of anxiety provoking procedures. The child's anxiety itself is difficult to measure and is highly dependent on the development of the child. Katz et al. (1980) tried to develop a measuring system for anxiety. However, their study shows the problems of dealing with a construct in which a number of different factors are involved, such as pain, Issues Concerning the Child with Cancer in the Literature / 29 individual sensations, circumstances etc. If a child is unable to cope with anxiety then it becomes an further burden in addition to experiences created directly through the illness. Thus, the open approach argues, communication is important to help to relieve anxiety. Binger et al. (1969: 115) state in their studies on the effects of an open approach: "There was no evidence during the course of the illness or in interviews with the families after death that these children had greater difficulty coping than their counterparts to whom nothing had been said directly. Both these families reported a more meaningful relationship with the child than they had ever experienced before. They thought this change was largely due to the frank discussion of the diagnosis and the open communication within the families (p. 115)." The open approach may help to reduce the general level of anxiety because it is possible to communicate about it. The feelings are not locked in and less energy is spent to keeping up the protective attitude. The discussion about various approaches has to take the children into account because their awareness level basically determines the possibilities of communication about the illness. 2.7. CHILDREN'S AWARENESS AND INFORMATION Myra Bluebond-Langner's (1978) interesting studies on dying children used an ethnomethodological approach. She studied their awareness and information gathering process by spending a longer period of time with them. She found that leukemic children acquire factual information about their disease in five stages (1978: 166). Each stage meant that more information about the disease was acquired. The knowledge which was acquired in one stage was necessary for the Issues Concerning the Child with Cancer in the Literature / 30 diag- "it" is names of purposes disease as disease as nosis serious drugs and of treat- a series a series i l lness side ments and of relapses of relapses effects procedures and and remissions remissions (- death) (+ death) interpretation of information in the next stage. Children moved from concrete levels to higher stages of abstraction. The had to know the names and purposes, of the drugs before they could relate them to the treatment and the illness. Children received a considerable amount of information from other children on the ward. Especially the passage from stage 4 to 5 depended on the news of another child's death. When a death occurred on the ward all children who were in stage 4 passed to stage 5. A very important factor is experience. Myra Bluebond-Langner (1978: 169) noted: "Some three- and four-year-olds of average intelligence knew more about their prognosis than some very intelligent nine-year-olds, who were still in their first remission, had fewer clinic visits, and hence less experience. They were only aware of the fact that they had a serious illness." This finding is consistent with other studies who also noted that direct experience influences conceptualizations (Jay et al., 1987). Other authors (Brunnquell and Hall , 1982) have noted that information is sometimes passed on through conversations between staff or staff and parents which take place in the child's room or nearby so that the child can understand the words. This, however, can also be a source for misunderstanding, because children frequently misinterpret technical or jargon terms and develop their own Issues Concerning the Child with Cancer in the Literature / 31 IMAGE 2 To the Children's Hospital Instruments beep and shudder with a long pale body in the midst of the clutter The body lies motionless with a pillow beneath her head while doctors huddle quietly without a notion of what's ahead Suddenly the face of the patient turns blue and all the doctor's eyes widen as they look at one another wondering what to do one switches the machine off and says, we'll let her sleep she's been through enough and with that went the last beep The doctors and nurses crowd around the patient praying silently amongst themselves tears run down the faces of those who knew her best feeling sorrow and relief that she is now at rest This poem is dedicated to my friend Toni who died Apri l 13, 1983 after spending one year recovering from Aplastic Anemia. On October 19, 1983, Debbie Gutz, the authoress of the poem went to join her friend Toni. It is a better life she has gone to. (Plaque on Hospital Ward) Issues Concerning the Child with Cancer in the Literature / 32 explanations, which can create a great deal of anxietj r. Myra Bluebond-Langner (1978: 169) observed that the children while passing through the different stages of acquisition of information also passed through five different stages of self-concept. dx 1 2 3 4 5 _ I I I I I L _ well s e r i o u s l y s e r i o u s l y always always dying i l l i l l and i l l and i l l and (termi-w i l l get w i l l get w i l l ne- n a l l y better better ver get i l l ) better The child receives the information necessary to pass from one stage to the other from his/her observations. Myra Bluebond-Langner (1978: 170ff.) described these passages: * Passage to stage 1: The child realizes from the behavior of others, i.e. crying of his parents, receiving many presents suddenly, etc., that it is serious. * Passage from stage 1 to stage 2: The child receives information from his peers and has the experience of remission. * Passage from stage 2 to stage 3: The first relapse is experienced as a shock; the parents cry more and the hospital staff is less open. * Passage from stage 3 to stage 4: More relapses are experienced and the child's world is rapidly being deformed by the disease. * Passage from stage 4 to stage 5: The child learns about the death of another person in a similar situation. Her anthropological study has produced some insight into the coping processes of children involved in such a situation. It also provides detailed information about the communication processes. However, the important link with the perspective of all persons involved, parents and especially health professionals, seems to be missing. Issues Concerning the Child with Cancer in the Literature / 33 2.8. HOSPITALIZATION 2.8.1. Being in Hospital Severe illnesses are usually handled within a hospital setting which has its own dynamics. Hospitals are oriented according to medical and administrative needs. Accordingly two lines of authority can be found within the setting. The medical authority structures treatments and sets professional hierarchies, and the administrative authority set rules for professional conduct and manages the financial resources. Hospitals have been criticized as becoming increasingly unresponsive to individual needs and setting their own agenda instead. Norman Cousins wrote about his experiences while he suffered from a life threatening illness (1979: 29): "I had the fast-growing conviction that a hospital is no place for a person who is seriously i l l . The surprising lack of respect for basic sanitation; the rapidity with which staphylococci and other pathogenic organisms can run through an entire hospital; the extensive and sometimes promiscuous use of X-ray equipment; the seemingly indiscriminate administration of tranquilizers and powerful painkillers, sometimes more for the convenience of hospital staff in managing patients than for therapeutic needs; and the regularity with which hospital routine takes precedence over the rest of the requirements of the patient (slumber, when it comes for an ill person, is a common blessing and is not to be wantonly interrupted) - all these and other practices seemed to me be critical shortcomings of the modern hospital." He decided to leave the hospital setting and adopted his own successful strategy for recovery. Not everyone will agree with Cousins, but it shows that the modern hospital has many shortcomings which may in fact be counterproductive Issues Concerning the Child with Cancer in the Literature / 34 for recovery from an illness. However, it is difficult for someone who does not see any choice to do anything but cope with the situation. This is the case with children who are usually not given any choice in this matter. 2.8.2. Impact of Illness and Hospitalization on Children Hospitalization is a major step for children. A n extensive literature describes the many issues and anxieties which are generated due to the separation from parents and the familiar environment (Stacey et al, 1970; Oremland and Oremland, 1973; Robinson and Clarke, 1980). There is agreement that hospitalization has an effect on every child (Prugh et al., 1953; King and Ziegler, 1981), but the impact varies according to the developmental age of the child. Hospitalization is more difficult to understand for the young children. Separation can be seen as loss although the parent is only temporarily gone. Robertson (1958) found three phases of responses to the absence of mother and the strange hospital environment: After an initial phase of of protest and distraught in which the toddler is crying for his mother, he enters into a phase of distrust and despair, which is followed by denial where he or she passively accepts the care and holding of other people. Teyber and Littlehales (1981: 58) note that "it is with this stage of denial that many hospital staff may be deceived; the toddlers denial is often misinterpreted as a "positive hospital adjustment". Despair and anger are commonly expressed in preschool-age and school-age children. Anger can be directed against parents and/or staff. Prugh et al. (1953) found the most extreme reactions between two and five years. Many young hospitalized children develop separation anxiety and become Issues Concerning the Child with Cancer in the Literature / 35 preoccupied with themes of death, especially when there are only limited opportunities for communication available (Teyber and Littlehales, 1981; Grollman, 1970). With respect to adolescents Oremland and Oremland (1973) reported feelings of being trapped, imprisoned, humiliated, helpless, as well as anger and frustration. Frustration and despair can lead to regression and social withdrawal (Vernon et al. 1965). If an impulse is too strong then withdrawal is quite a common reaction. King and Ziegler (1981) concluded in a review article on the literature of the behavioral effects of hospitalization on children that the presence of mother or mother substitute has positive effects on the child. This, however, requires that the mother can be there for the child, which is a difficult task if there are siblings, or if she herself is preoccupied with her own feelings about the illness. With increasing age children become more aware of their body. Their body sensations can be seriously disturbed by the intrusive measures which take place during the treatment of cancer. This creates a great deal of anxiety which can even increase with the frequency of the procedures as Spinetta and Maloney (1975) have found in their observations of bone marrow transplantations. It has been mentioned before that anxiety is difficult to measure objectively because the reactions are very different according to age and personal background. Some authors tried to measure anxiety with different instruments such as projective and other tests (Waechter, 1971; Spinetta et al., 1973; Calkin, 1979; Katz et al., 1980). Although a high degree of anxiety has been measured it seems difficult to differentiate which factors cause anxiety. Anxiety in measurements refers mostly to a construct and ignores its relevance for the individual as part of the coping processes. In addition circumstances and the pain involved in some Issues Concerning the Child with Cancer in the Literature / 36 procedures might be included in the measurements of anxiety as well as individual reactions to issues such as loss of control (Susman et al., 1987). Conclusive research about age related coping processes has yet to be. undertaken. The loss of personal control is also a major issue when the child becomes a member of the institution hospital as a patient. Not only is the private sphere opened up to many strangers, there are also new rules which apply and a certain behaviour is expected in the new role, which has been adopted involuntarily. Judith Lorber (1975) described for example the expectation which nurses have of a patient: "Ideally, from the nurses' perspective, all the patients should be sick when they enter the hospital, should follow eagerly and exactly the therapeutic programme set up by staff, should be pleasant, uncomplaining, fit into the hospital routine, and should leave the hospital 'cured'. Good patients handle their illness well, are co-operative, as cheerful as possible, comply with treatment, provide the staff with all the relevant information, follow the rules, do not disrupt the ward or demand special privileges and special attention." Those expectations influence the attitudes of hospital staff toward children as patients. 2.8.3. The Roles of Health Professionals The literature about health professionals with respect to the care of a child with cancer reveals a large amount of information about what they should do. However, the care of the child has various realities as David Friedman (1977: 10) notes: "Every day children are seen for health care and dental care; treated for injuries, illness and dental problems; listened to and counseled; protected from abuse and neglect; and helped by family counseling all by a warm, friendly, capable health professional. Issues Concerning the Child with Cancer in the Literature / 37 On the other hand, every day, children are forcibly detained, force fed, starved, browbeaten, hoodwinked, tortured, suffocated, drugged, torn from families, tied down, forced to strip and expose, subjected to a variety of indignities, detained without explanation and denied a call • for help, denied due process and informed consent, and denied means of presenting case and grievances to the public - all in the name of "their best interest"." One of the main difficulties in the treatment of a child with cancer is to determine the best interest of the child and his family and act accordingly. This area seems to be dealt with in anecdotal reports about successful interventions (Karon and Vernick, 1968) or in advice on how the physician or nurse should behave. Solnit and Green (1959: 106) point out the physician's approach with respect to fatal illness: "By making the child and parents as comfortable as possible the physician establishes himself as one who will help them endure the crisis for which they are preparing. Through his skill in communicating with child and parents in this situation the physician helps the child and family to feel appropriately dependent on the doctor and his staff." They argue for early information and acknowledge that physicians have their own fears about death. Physicians might feel defeat and helplessness as well. With regard to the personal reactions, Solnit and Green (1959: 111) state: "However, if he becomes involved to the extent of grieving with the parents, his helpfulness will be much reduced." This seems to be a concern which others have noted as well that "professional objectivity" might be lost if "physicians become too involved with their patients" (Tietz and Powars, 1975). Similar problems are reported with nurses who are supposed to work toward the same goals as the physician. In books on pediatric nursing these goals are stated as follows (Leifer, 1982: XIII): Issues Concerning the Child with Cancer in the Literature / 38 "The goal of pediatric nursing is to foster the growth and development of children and promote an optimum state of health - physically, mentally, and socially - so that they may function at their peak capacity." The promotion of health is limited with a child with cancer. During the treatment, nurse and physician have to do a number of things which seem to have a detrimental effect on the child's health, for example the side effects of the drugs which can cause illness (toxicity) and change in appearance (hair loss). The goals of pediatric nursing to be concerned with "promoting, maintaining, and restoring the health of children and their families" (Sarah B. Pasternack in Smith et al., 1982: 38) seem to be more distant. The realities of the cancer treatment do not seem to match the expectations which cause burnout, going from enthusiasm to stagnation, frustration, and apathy (Edelwich and Brodsky, 1980; Kramer, 1974; Yasko, 1983). Despite their own anxieties and frustrations, health professionals have to live up to the expectations set by their professional goals. Catherine Kneut (1982: 416) reports four factors leading to nurses' burnout: 1. Working in stressful situations for too long, 2. inadequate support systems, 3. loss of professional perspectives, 4. lack of professional challenges. Other authors believe that the major cause for staff burnout is that they "generally keep their "unacceptable" or difficult emotional reactions to themselves, an isolating process" (Teyber, Littlehales, 1981: 61). Some authors suggest team approaches in the treatment of children with cancer (Adams, 1979). This, however, seems to be a difficult task in a Issues Concerning the Child with Cancer in the Literature / 39 hierarchically organized hospital setting, when responsibilities are split amongst different professions. This organizational system can also be structured to act as a defense system against anxieties as Isabel Menzies (1970) notes by attaching the nurses for example to a strict administrative structure where they have to follow the instructions irrespective of personal considerations. A good nurse carries out the instructions accurately (Menzies, 1970: 1 Iff.) It has been noticed that health professionals, because they do not always want to be the "bad guys" who are inflicting pain, look for rewards in the relationship with patients, which can lead to competition between staff and parents (Stacey, 1970). This conflict is even addressed in textbooks on pediatric nursing (Marlow, 1977: 82): "Many nurses believe that they can accomplish their mission in child care by providing "parent love" for each child with whom they come in contact. The nurse may believe that expressions of affection, tenderness, warmth, and concern will be rewarded by the child's love in return." But of course parental love can never be substituted by health professionals. In addition nurses might be in a kind of catch 22 situation when they have to apply their "textbook behavior" (Marlow, 1977: 91): "The nurse should never be critical of a parents' attitude, however unreasonable it may appear." It is obvious that this attitude affects the openness of the communication and gives nurses no chance to a mutuality in the interactions. Attitudes influence the openness of communication and therefore it is interesting to note that in a survey conducted by Wiener (1970) a majority of the physicians replied that parents should usually or always be given the Issues Concerning the Child with Cancer in the Literature / 40 diagnosis of the fatal illness of their child. However, the majority answered "seldom" or "never" to the question: "Do you believe most children should be informed, at their level of understanding, of the nature of their illness?" (Wiener, 1970: 702); and this belief increased with the years in practice. While more recent reports investigate the benefits of giving information (Slavin et al., 1982) there is no evidence yet of a general openness in communication with children. 2.9. THE VARIOUS PERSPECTIVES The approaches which have been taken in the published literature vary from individual opinions to case studies and to the development of measurements and instruments in an effort to deal with the complex processes involved. In general terms one can state that many researchers seem to be preoccupied with individual aspects from different professional viewpoints. Efforts have been made to quantify the information which results in the development of instruments measuring constructs such as anxiety. However, a link between the insights of different perspectives combining the backgrounds of all the persons involved in the care including the child himself seems to be missing. In addition the question what to tell children has to be paired with the appropriate mode of communication, how it should be done. This involves parents as well as staff in the hospital setting and must reflect many contextual variables (Binger, 1984; Chesler et al., 1986). Communication can be seen as an essential area with respect to the coping processes. A thorough analysis of the human interactions in this context has to study how meaning is generated and communicated. This must include an understanding of the perspectives of all persons involved in the interaction. The Issues Concerning the Child with Cancer in the Literature / 41 interactions are affected by their context and the hospital setting itself may have considerable influence on behaviour and communication. The extent of this influence as well as the processes of communication in the setting have not yet been thoroughly investigated. These considerations led to the conceptualization of this study. 3. CONCEPTUALIZATIONS It has been mentioned' that the theoretical base for this research project is linked to the theory of symbolic interactionism. In the following paragraphs I will give a brief outline of the main ideas of this conceptual framework which seem relevant in the context of this study. However, this does not constitute an attempt to provide an exhaustive review and critique of symbolic interactionism and its various lines of thinking. 5 The name "symbolic interactionism" was coined by Herbert Blumer (1938) and has links to the thoughts of George Herbert Mead, John Dewey and other authors in social psychology. Some authors (Joas, 1987) also refer to the Chicago School, which points at the historic development of the main ideas with George Herbert Mead's thoughts as the focal point. Social psychology examines the experience of the individual, but also seeks to determine the links to the social structure in which the individual lives. According to George Herbert Mead (1934) society becomes the general framework for action. Actions consequently become social acts within this context. Society is linked to minds and selves of its individual members, who are - just as society - subject to evolutionary development. Self is not a physiological and fixed unit, but it is rather developing from the interaction of an individual with society and other individuals. This means that the self arises from social experiences. Through the self an individual can be a conscious actor within society. Contrary to the physiological body the self can also become object to himself which enables reflection of oneself and sets the stage for the development of reason. * see The First Chapter. ~ 5 The book "Symbolic Interaction" edited by Manis and Meltzer (1967) provides a good overview about various trends and their applications. 42 Conceptualizations / 43 Becoming object to himself makes the self "essentially a social structure" (Mead, 1934: 140) and transcends the stimulus response mechanisms of animal behaviour. The self as a social process has two analytically distinguishable parts, the ' T and the "me". George Herbert Mead states (1934: 175): "The T is the response of the organism to the attitude of others; the 'me' is the organized set of attitudes of others which oneself assumes. The attitudes of others constitute the organized 'me', and then one reacts toward that as an T . " It is essentially the "I" which creates new activity in social process and where important values are attributed. The "I" is also responsible for reflexiveness and the development of innovative behaviour. Communication is a form of social behaviour in which the individual may become an object to himself (Mead, 1934: 138ff.). In order to achieve understanding, a relationship to common interpretation between individuals in an interaction has to be established. The understanding of gestures, symbols requires that a connection can be made to more abstract processes of evaluation, to conceptualization which goes beyond the immediate response to a situation. However, according to George Herbert Mead meaning is constituted in social acts and is not based in independent ideas as idealist philosophers claim. "Meaning is thus a development of something objectively there as a relation between certain phases of the social act; it is not a psychical addition to that act and is not an "idea" as traditionally conceived." (Mead, 1934: 76) Meaning is expressed in significant symbols which are interpreted by individuals and lead to subsequent behaviour. The reflection of self which is necessary to Conceptualizations / 44 interpret symbols and act purposefully constitute the development of mind. Mind enables the interpretation of meaning and makes it possible for an organism to take the role of the other within social acts. Mind is "the reflective intelligence of the human animal" (Mead, 1934: 118) which enables the individual to determine present and future conduct. Mind requires awareness of actions which means that the self becomes object of itself as a process of reflexiveness. "Mind arises in the social process only when that process as a whole enters into, or is present in, the experience of any one of the individuals involved in that process. When this occurs the individual becomes self-conscious and has a mind; he becomes aware of his relations to that process of a whole, and to the other individuals participating in it with him; he becomes aware that of his relations to that process as a whole, and to the other individuals participating in it with him; he becomes aware of that process as modified by the reactions and interactions of the individuals - including himself - who are carrying it on." (Mead, 1934: 134) Reflexiveness is the essential condition for the development of mind because it enables the individual to take attitudes of others toward him/herself and consciously adjust to social processes. Similarly objects of experience do not exist -a priori. They do not have any meaning per se. They are linked to processes like food to physical organisms. George Herbert Mead states (1934: 77): "That is to say, objects are constituted in terms of meanings within the social process of experience and behavior through the mutual adjustment to one another of the responses or actions of the various individual organisms involved in that process, an adjustment made possible by means of communication which takes the form of gestures in the earlier evolutionary stages of that process, and of language in its later stages." It should also be mentioned that George Herbert Mead distinguishes between Conceptualizations / 45 physical objects, social objects (involving social acts) and abstract objects (concepts which refer to ideas). However, it is important to highlight that according to Mead human beings live in a world of objects to which they give meaning in processes of social interaction. It has been said that Mead's theory as a good analytical scheme lacks definite links to the empirical world. Blumer regards theory as being closely connected to the empirical world and not isolated from it. He states (1969, 141): "Theory, inquiry and empirical fact are interwoven in a texture of operation with theory guiding inquiry, inquiry seeking and isolating facts, and facts affecting theory. The fruitfulness of their interplay is the means by which an empirical science develops." Without this connection theory has little value and in addition theoretical concepts cannot be static because there is an ongoing interplay between theory and empirical facts. Concepts are needed to organize and identify meaning in empirical science. Herbert Blumer elaborates (1969: 143): Theory is of value only to the extent to which it connects fruitfully with the empirical world. Concepts are means, and the only means of establishing such connection, for it is the concept that points to the empirical instances about which a theoretical proposal is made. If the concept is clear as to what it refers, then sure identification of the empirical instances may be made." Consequently Blumer and others established this link with the concepts of symbolic interactionism. Based on Mead's ideas the theory of symbolic interactionism focuses on communication with symbols within a society. A key concept in symbolic interactionism is that communication happens with the use of meaningful symbols which are interpreted b}' individuals within a social act. The use of symbols Conceptualizations / 46 requires interpretation and the involvement of self with the use of objects. As Herbert Blumer notes (1969: 80): "The object is a product of the individual's disposition to act instead of being an antecedent stimulus which evokes the act. Instead of the individual being surrounded by an environment of pre-existing objects which play upon him and call forth his behavior, the proper picture is that he constructs his objects on the basis of his on-going activity. In any of his countless acts - whether minor, like dressing himself, or major, like organizing himself for a professional career - the individual is designating different objects to himself, giving them meaning, judging their suitability to his action, and making decisions on the basis of judgement. This is what is meant by interpreting or acting on the basis of symbols." The individual perceives things, evaluates them and acts on the basis of the meaning which s/he gave to objects. Behaviour cannot is not merely the result of external stimuli or internal factors such as motivation or attitude, but rather it is generated during interactive processes involving individual and his/her social environment. Meaning evolves from interactions between persons as a product of social acts and is therefore not a static concept. Blumer (1969: 4) states: "The meaning of a thing for a person grows out of the ways in which other persons act toward the person with regard to the thing. Their actions operate to define the thing for the person. Thus symbolic interactionism sees meaning as social products, as creations that are formed in and through the defining activities of people as they interact." This highlights again the focus on interactions as social acts, which are the essential processes that form meaning and generate understanding. The rules of society or a particular group are represented in the conception of a generalized other. This means that reality is shared by different individuals which involves the development of a joint perspective. A n individual Conceptualizations / 47 can follow rules and adopt perspectives which may have grown historically within society. The generalized other enables an individual to follow a generalized set of expectations or definitions (Charon, 1979). This concept is implicit in group perspectives, such as perspectives of a professional group in a hospital, because it shapes individual behaviour. In summary symbolic interactionism is a conceptualization of social processes which focuses on the interaction of an individual with society by means of symbols which are actively interpreted. Herbert Blumer (1969: 50) outlines the central conceptions of symbolic interactionism: "These central conceptions are: 1. people individually and collectively, are prepared to act on the basis of the meanings of the objects that compromise their world; 2. the association of people is necessarily in the form of a process in which they are making indications to one another and interpreting each other's indications; 3. social acts, whether individual or collective, are constructed through a process in which the actors note, interpret, and assess the situations confronting them; and 4. the complex interlinkages of acts that compromise organization, institutions, divisions of labor, and networks of interdependency are moving and not static affairs." Individuals become actors within social processes which they shape in interactions by using symbols which give meaning to the objects of their world. The process oriented focus of symbolic interactionism clearly makes it necessary that research strategies must reflect the human interactions within their context. To understand the processes of interaction a researcher must be able to gain insight into the roles of the individuals under study. The method of inquiry must reflect the individual and social level as well as situational aspects. This means that methodology cannot rely on a static and detached theoretical concept with static instruments of investigation. The method of an inquiry has to Conceptualizations / 48 be regarded as a process which has to be adapted to specific situations in order to capture the elements of human interaction. In particular the researcher must get insight into the interactions from the point of view of those s/he studies. The processes of interpretation are subjected to development from the perspective of the society as well as from the individual. A child learns more about the world surrounding him/her in a developmental process with language being the most important element in terms of social interaction. Children also have a developing self which enables them to determine their own actions, take the role of another, establish and follow rules. This all happens in a process of socialization which evolves in interpersonal relationship. Norman Denzin (1977: 2) defines this: "Socialization from the standpoint of symbolic interactionism, represents a fluid, shifting relationship between persons attempting to fit their lines of action together into some workable, interactive relationship." Socialization is seen as an ongoing social process which happens in interactions between individuals, when they take each other's roles and produce joint lines of activity. Language development is a crucial parameter in childhood socialization because it establishes the link to society (Mead, 1934; Denzin, 1977). Authors have placed the development of self in an environment distinguishing several stages of the development of self (Charon, 1979): 1. In the preparatory stage the child imitates the acts of significant others without necessarily understanding their perspective. 2. In the play stage the child takes the role of significant others by analyzing, identifying, and directing self without organized perspective. 3. In the game stage the child takes the role of the generalized other within Conceptualizations / 49 community, group, games and can react to the self from the standpoint of rules. 4. In the reference group stage the individual can take the role of several groups and the self can be divided between various social worlds. While these stages depict a developmental concept they must also be seen in the situational context. It can be hypothesized that children joining a new group or being placed into environments such as the hospital may go through these stages while they familiarize themselves with the setting. Identifying individual stages then becomes a very complex multilevel process which is connected with various social situations. The view of a child underlying this study is in line with symbolic interactionist thinking that a self-conscious organism is able to define his/her own reality and define, shape, and negotiate his/her own relationship to objects of that reality (s.a. Denzin, 1977). This implies that the child him/herself is able to shape the ongoing developmental process of socialization within the given context. Language in combination with expressive behaviour can be seen as important reflections of the socialization processes and the development of self within the hospital setting. They form the focus of this investigation. The theoretical view influences the methodology which is used to obtain information as well as its interpretation. A n example may illustrate this influence on the interpretations: A n expression of a child's pain is not interpreted as a mere stimulus-response action, but the role of a child as an actor in the social situation is also taken into account. During painful medical procedures a child may also react to situational aspects, to the persons who are present, to previous experiences, and many other variables. Symbolic interaction implies that a child is able to shape his/her own reaction to a stimulus and interact with Conceptualizations / 50 others in any social situation. The following chapter will explain how the theoretical frame of reference shaped the methodology which was used for data collection in the setting. 4. CONDUCTING THE INQUIRY The problems of developing appropriate research methods is not new. Aristotle wrote in "De Anima" (Ethics I: 1): "...it might be supposed that there was some single method of inquiry applicable to all objects whose essential nature we are endeavoring to ascertain (as there is for derived properties the single method of demonstration); in that case what we should seek for would be this unique method. But if there is no single and general method for solving the questions of essence, our task becomes still more difficult; in the case of each different subject we shall have to determine the appropriate process of investigation." "If to this there be a clear answer, e.g. that the process is demonstration or division, or some other known method, difficulties and hesitations still beset us - with what facts shall we begin the inquiry? For the facts which form the starting-points in different subjects must be different, as e.g. in the case of numbers and surfaces." A n appropriate method of investigation has to be found in relation to the research and its focus: the communication between a child with cancer and the persons involved in his/her care. The analysis of communication as a dynamic and interactive social process must also take its context into account. The context of communication in this study consists of the influences of the social and physical setting, personal attitudes, family background, and emotional variables. It also has to be taken into account that the investigation takes place in often emotionally intense circumstances. The theoretical base for this research is linked to the theory of symbolic interactionism. 6 Children and adults alike possess a self which enables them to interpret behaviour and act purposefully on the basis of those interpretations (Blumer, 1969; Denzin, 1973). Meaning is generated in interactions and is used to create new behaviour in a particular context. Interactions do not happen in See chapter "3. Conceptualizations". 51 Conducting the Inquiry / 52 an empty space, they take place within a context and proponents of symbolic interactionism have often described how communication changes with the setting in which it takes place (Goffman, 1959; Manis et al., 1967; Blumer, 1969). The hospital setting as the interactive context for this study generates its own social rules and behaviour patterns. The emotions of the participants in interactions can also influence communication and this is of special concern in this study which analyses interactions at a time when intense feelings occur. Before the necessary methodological steps can be outlined, context and limitations of the study have to be examined. These limitations are found within the parameters of the illness and the persons involved. 4.1. CONTEXT OF T H E STUDY 4.1.1. Phases of the Illness Four main stages in the course of the illnessCcan be distinguished: 1. Health; 2. first signs of illness; 3. treatment process, a. professional assessment, b. diagnosis, c. medical treatment; 4. remission. There are important differences between remission and recovery. Remission means that no signs of the illness can be found, but treatment continues for some time. In addition there is also a danger of relapse, at which time the intensive Conducting the Inquiry / ' 5 3 treatment process is repeated with a shorter stage of professional assessment. Parents and child make their first contacts with health professionals during the stage of professional assessment. However, the illness has not yet been defined. Thus the study can start with the establishment of the diagnosis and hospitalization. From this point one can distinguish three phases: 1. Diagnosis - treatment - first remission; 2. first relapse - treatment - second remission; 3 . multiple relapse - treatment - remission/death. It would be ideal if the whole course of the illness could be investigated in several longitudinal studies. However, this was not practicable within the limitations of this research project. The initial phase was considered as crucial because it involves the first confrontation with the ' illness and requires a maximum of cognitive and emotional adjustment. Advances in medical treatment and resulting improvements in prognosis put an additional emphasis on the first phase of treatment. Therefore this first phase has been selected as the focus of the study. Since children of different phases were present during the observations on the hospital ward where they were treated their reactions and communication patterns could be observed as well. However, they were not part of the core of this investigation as their interactions could not be followed up as closely. 4.1.2. The Persons Involved The first phase of cancer treatment in the hospital setting involves three groups of persons: 1. Health professionals, Conducting the Inquiry / 54 2. parents, and 3. children with cancer. To generate an understanding of the communications of members of each group a researcher requires background information beyond the literal symbols which are exchanged. This shows the importance of a longitudinal perspective which involves spending more time with the persons under studjr in order to get to know interpretations from his/her specific viewpoint and learn about changes in the social processes. Therefore all three groups have been the object of intensive observations in this study. The position within a setting influences the perspective (s.a. Piore, 1983). It therefore seems important to make sure that the researcher has mobility within the setting so that he/she can shift perspective and investigate various roles of others. An additional parameter is provided by developmental considerations with respect to children, especially young children. Developing quickly in every aspect of their lives they also go through the formative stages of social behaviour. For young children the impact of cancer may be especially severe because their understanding of the events is limited and they have difficulty in conceptualizing illness and treatment. Since a new stage of development begins with puberty, involving new issues in socialization processes, the age of the children studied was limited to a maximum of ten years. In summary, the focus of this investigation is on children with cancer and their families during the first phase of the treatment while the age of the children does not exceed ten years. Conducting the Inquiry / 55 4.2. AN ANTHROPOLOGICAL APPROACH: PARTICIPANT OBSERVATION A methodology for this investigation must be able to reflect the process oriented character of the social acts between the persons involved in this study. The most applicable methodology seemed to be a qualitative approach using observation procedures in order to gain insight into the roles which are adopted in the hospital setting. This is consistent with the theory of symbolic interactionism, because it can take into account the dynamic processes of interactions while generating understanding for the perspectives of the persons involved. Qualitative approaches such as participant observation are common in anthropological or ethnographic research of various cultures, but they have also been used to investigate social organization within one's own culture (Douglas, 1970; Messerschmidt, 1981). One may also regard the hospital setting as a separate cultural entity, which generates its own distinctive patterns of communication and human behaviour. Culture can be defined in this context as "the acquired knowledge people use to interpret experience and generate behavior" (Spradley, 1980). It is the aim of an anthropologist to become a student of the observed persons, who then become the teachers. The anthropologist is usually involved in the activities of his research subjects as a participant observer. The degree of participation can vary in a continuum of complete, active, moderate, passive, non-participation (Spradley, 1980). Every observation in which an observer is physically present must be considered as participation. Non-participant observation can be considered when the observations are taking place through technical devices such as video or one way vision 7 without direct involvement of a person. Those devices may have their own influence on the data collection. Conducting the Inquiry / 56 Complete participation, which is on the other end of the spectrum' means that the researcher takes the role of the observed person completely. This has been done for example in a research project for palliative care, in which the researcher with the help of a physician was labelled as dying, and then could experience the care of a dying person from a patient's point of view (Royal Victoria Hospital, 1976). Possible roles in field work have been discussed by several authors (Gold, 1958; Denzin, 1970; Spradley, 1980). The dialectic relationship between participation and observation has been highlighted by Raymond L . Gold (1958). He points out that between the two extremes of complete participant and complete observer there are the roles of "participant-as-observer" and "observer-as-participant". Complete observation indicates a high degree of detachment from the situation and is in danger to revolve around the theoretical preconceptions while a complete participant may succumb to his/her role and lose the function of an observer. In the case of this study the participation was kept to the minimum possible within a "participant-as-observer" role (Gold, 1958). The minimum participation was chosen in order to avoid influencing the delicate emotional processes and recording an "original" state of the interactions as much as possible. The minimum participation also enabled the researcher to keep away from involvement with power within communications in the hospital hierarchy. This can be regarded as one of the preconditions for possibility to change perspectives and roles within the setting which was of paramount importance for the research project. The issue of observer involvement must not .be confounded with the issue Conducting the Inquiry / 57 of objectivity within the interpretations. Objectivity in this context does not imply a separate entity which is detached from the process of information gathering. There is no presupposition of objective social meaning as in theories of positivist objectivism who claim that objectivity can be attained within a scientific method. Symbolic interactionists (Blumer, 1969; Manis et al., 1967) have stated that theoretical detachment from the empirical world leads only to a subjective reflection of the researcher's concepts. On the other hand a researcher must be able transcend the individual bias of him/herself and the persons s/he studies to identify concepts and interpret empirical data. Objectivity thus becomes a process which occurs within the interaction between an individual and empirical facts. As part of this process the researcher must become an object of the investigation, as well as the individual subjects under study. This also helps to monitor the effects of the observer on the setting and make biases explicit (s.a. Myrdal, 1969). This problem has been addressed by providing a self-reflective chapter "Participant Observation: A Personal Account", which highlights processes and problems during the conduct of the study, and individual observation accounts in the context of all groups and subgroups of persons under study. It has to be taken into account that any observer has an influence which is correlated to the degree of awareness of his/her presence by the observed persons. This influence may be diminished with appropriate behaviour of the observer. This can be addressed by attachment to an existing role in the setting, i.e. acting as a doctor. This happened in the observations of the professionals when the researcher was perceived to be in connection with one particular professional group and therefore rarely challenged by others. If the least possible degree of participation is the goal then the observer Conducting the Inquiry / 58 has to blend in with the setting, so that s/he is barely noticed. Every participant will be noticed and therefore influence the situation. An observer has to respect general behavioral rules of politeness which are expressed with physical and verbal symbols. If a person does not even say "hello" s/he will most likely be looked at as an unwelcome stranger. However, if the observer keeps his participation consistently to the situational minimum possible, s/he will soon disappear into the background and more important issues have priority in communication and attention. This can be considered as a 'wallpaper effect', which means that the observer becomes part of the general physical background in the perception of the persons observed. This has also been noted in this study when individuals "forgot" the presence of an additional person, i.e. an observed person said to the observer after an involved conversation with another person: "I completely forgot about you". Unobtrusiveness which can be achieved by appropriate behaviour in the setting has also disadvantages for the analysis. The relevance of issues cannot be examined immediately without changing the degree of prominence of the observer (s.a. Denzin, 1970). For example, if the observer suddenly asks questions during and interaction s/he observes the role changes from a passive to an active participant. If the choice is made to remain in the background, an opportunity for clarification may be lost. However, this problem was addressed with the interviews which were conducted throughout the study. It has to be noted that in a participant observation methodology analysis is carried on sequentially using inductive processes (Becker, 1958). Issues and patterns are noted during observations which have to be examined during further observations. This means that analysis does not take place separate from the Conducting the Inquiry / 59 data collection, but is rather a dialectic part of it. Observations without structure do not necessarily make sense and analysis separate from the observations is in danger of leaving out important clues. Therefore observations move from generalized to focused levels, and interviewing proceeds from a general informal to a focused and formal level. The observations can be classified into three different types: descriptive, focused, and selective observations. As a rule the wider scope of descriptive observations is applied at the beginning of studies and the scope is made narrower with regard to events and patterns which evolve. The focus of the observations was changed when issues needed clarification. However, a general view was maintained in order to be perceptive with respect to other issues which may not yet have been addressed. The scope of the observations therefore became an oscillating process throughout all the stages of the research. Interviewing was used to clarify issues arising out of the observations. It served to focus and elicit patterns of interaction in the setting. Interviews were conducted in two ways: 1. Informal interviews were any questions of clarification or information, which were asked in a situational context rather than in prearranged situations. 2. Formal interviews were prearranged sessions during which issues arising from the observations, such as obtaining information, specific problems with the treatment, etc., were addressed in a focused situation; these interviews were recorded on tape or by note-taking if prior consent had been given. Interviewing has to be adapted to the situation in which it takes place and is also influenced by the way in which it is conducted (Becker, 1956; Rieken, 1956; Spradley, 1979). This is also true for the interviews which were conducted in Conducting the Inquiry / 60 this study. The informal interviews were very much influenced by the specific situational context. Frequently they occurred at the nursing station where people would come to gather information. Some consisted out of single issue questions to clarify an observation, i.e. "what does this mean?" and others were casual talks with parents or staff about a current concern, i.e. if the medication had arrived. Also many brief conversations in the hallway or in the cafeteria are within this category. While lunchtime - an occasion for informal feedback was regularly shared with staff members during their observations, meetings with parents in the cafeteria happened only by chance and never involved children. Generally I kept a low key listening role during conversations which I attended and would only occasionally use the opportunity for an informal interview clarifying issues when they came up. Formal interviews were usually arranged at the request of the observer and were scheduled in advance. The individual staff members who agreed to being followed were interviewed after the observations were completed in addition to some who served as informants. 8 Sixteen formal parent interviews were conducted in addition to the in home interviews of parents participating in the case studies. 9 No formal interviews were arranged with the children because it was assumed that they would react strongly to the situational context and thus not be helpful providing actual answers. During formal interviews I took a more active role by addressing issues which I had observed and by following up with questions. " For more details see the chapter "6. Hospital Staff'. 9 For more details see the chapter "7. Parents and Families". Conducting the Inquiry / 61 It is quite common in anthropological research to use informants (Spradley, 1979; Agar, 1980). These are persons who have particular insight and are accessible to the researcher. They can help to introduce and reflect issues of the setting under study and also assist in getting access. This study was no exception and some key people, especially within the professional setting, were available to answer questions and discuss issues. This was particularly helpful in obtaining the necessary information about medical and organizational procedures. A case study approach was chosen as a device to provide a frame of reference for a richer understanding of the proceedings of the treatment. It enabled investigation of the dynamics of interactions as processes and not as static events. Following a small number of individual children provided an opportunity to gain more understanding of their perspective, because a treatment procedure could be observed in the contextual frame of reference of the child. It gave important insights into the meaning of hospital processes for children and interactions could be observed in their historical, personal and emotional context. Most of the scenes concerning the perspective of children, which are presented as examples later, derived from those case studies. In a way one might argue that the hospital under study was a case in itself, but reference to case study is made here with respect to individual children who were in the appropriate age range during the first phase of cancer treatment in the hospital setting. This involved four different families whose children were within the age range under study. 1 0 The observations of these " r c Details about the cases are given in subchapter "7.1.1. The Case Studies", in the context of the chapter "Parents and Families", and in subchapter "8.1.1. The Case Studies", in the context of the chapter "Children". The way in which parents and children were approached is stated in the subchapters " Parents", and " Children". Conducting the Inquiry / 62 families also provided a convenient frame of reference for observations of children and families in the hospital setting. Additional cross-sectional observations of other children on the ward were also made to provide a wider degree of information about the functioning of the setting and to achieved a greater degree of generalizability of the issues within the setting. While being with the individual children under study I became a feature of the setting and was able to watch other children interact and openly show their emotions and attitudes. A certain amount of overlap between the observations of children and parents was inevitable and to some extent beneficial. It was important, however, to make distinctions and observe the individual approaches towards a communication from the viewpoint of the respective person. 4.3. ACCESS In order to be able to collect information, which is sometimes of a very personal nature, access to the setting and to the persons involved is very important. In such an emotionally tense situation access can be quite difficult and yet it is crucial for the success of the project. Some researchers have developed a gradual approach in order to gain access and sharpen the research focus. Spradley (1980) called this "reconnaissance". This can also be part of the data collection because it often reveals interesting details about the setting. A similar approach has been chosen for this research project in order to expand the access to the various levels of the setting and to tune the appropriate observational behaviour. The first part of observations of professionals (hospital teachers) was undertaken as a pilot study. Conducting the Inquiry / 63 A very important issue is the degree of acceptance the observer is able to get from the members of the setting he/she studies over time. This influences his/her ability to collect data and to get access to the more intimate functional details of an organization. This dynamic process can also have considerable influence on the degree of observer participation (Light and Byerly, 1981). 1 1 Having a regular presence within the hospital setting proved to be an important asset for gaining informal access to the individual persons acting within it. A more formal access procedure involving medical and administrative authorities had to take place before individual persons could be approached to give their consent to take part in the observations. University requirements as well as concerns of the hospital administration had to be addressed. This involved formal proposals and presentations at appropriate committees1 2 before individual consent could be obtained. No individual observations were done without the explicit consent of the persons involved 1 3 and it was made clear that this consent could be withdrawn any time. The respective procedures of getting consent are included in the introductory statements preceding the accounts of every group of persons involved. It should also be noted that the reflective accounts about the observations indicate additional issues arising from the conduct of observations and observer behaviour. Access cannot only be seen as getting permission to undertake the research project and conduct observations, it must also involve access to See also the chapter "5\ Participant Observation: A Personal Account" which includes more details about the processes of acceptance in this study. 1 2 Several experiences are highlighted in the subchapter "5.4. Stage 4: Fieldwork". 1 3 See consent statements in the Appendix. Conducting the Inquiry / 64 information. This depends very much on the actual conduct of the observer and his/her relationship with the persons under study. It is a process rather than a step which reflects its characteristic of a social act. 4.4. FIELDWORK The immersion in the field is the central piece of any study using ethnographic methods such as participant observation. Fieldwork took place over a time period of three years, three months and two weeks. A total of twelve months involved direct observations in the hospital setting. The timing of observations had two distinct phases lasting approximately six months each: observation of hospital staff and observations of children and their families. Observations of hospital staff initially excluded social workers, because the department was in a transition involving staff changes at that time. Observations of social workers were appended at the last part of the second phase of the study. The intermediate time between the fieldwork phases was used to obtain a more formal access and consent from various committees.1 * In addition field notes were analyzed and evaluated. Many persons in the setting changed during the gap between the phases of fieldwork. This interval provided an opportunity to decrease misperceptions of my role, particularly by parents and children who in the first phase usually saw me associated with staff roles. Because some time had passed, I was able to make a new beginning when I was observing children and their parents. The daily time of observations was determined by staff shifts or the main timeframe of activities between breakfast and supper on weekdays. However, See also chapter "5. Participant Observation: A Personal Account". Conducting the Inquiry / 65 unusual times for major events such as nightshifts and weekends were also taken into account and became occasionally part of the fieldwork in order to examine the situation personally. It has been stated earlier that an effort was made to minimize interference with hospital routines, events and reactions. Therefore the observer's conduct was as low key, friendly, and as unobtrusive as possible.1 5 4.4.1. The Setting The fieldwork took place in a modern pediatric hospital. Treatment for cancer was administered on a specific ward with 22 beds. Most of the observations took place on this ward. The hospital provided, a treatment facility for a large area and therefore many families had to travel great distances. A l l families who took part in the case studies lived within a four hour transportation radius. 4.4.2. First Phase: Hospital Staff The various health professionals became the first target for the observations. Their consent was important for the general access to the setting. Participant observations of several different health professionals who worked in the hospital with children with cancer were undertaken using direct observations while following a staff member through his/her work. This enabled me to get to know the setting as well as being introduced to the people. Being with staff members also gave me a role definition and enabled me to adapt observational behaviour. Getting access involved personal contact with the respective staff members T " 5 Experiences made during observations, such as changes in dress, conduct, reactions of those observed, are attached to the chapters reporting finding of the fieldwork, e.g. 6.2.9. Observing the Teachers, 6.3.8. Observing the Nurses, etc. Conducting the Inquiry / 66 as well as consent by the professional hierarchy. This required introducing myself and the research project to the head of the respective department and to the various staff members who I wanted to observe. After verbal agreement was obtained the observational schedule was set up with the respective staff members. The observations of staff members were made over a period of almost six months. Most professional groups were observed directly for two weeks. The observations began with the teachers (2 weeks) who conducted classes in a separate room outside of the actual ward, but they were also involved in bedside teaching with children who were unable to attend classes. This provided a more general introduction to the hospital because the teachers were involved with children on many different wards. Observations of the Head Nurse (2 weeks) followed who then changed role and became Nurse Clinician (1 week). Several days of general ward observations followed and attention was given to the general activities on the ward, some staff rounds, as well as the number of persons who were passing through. Nurses were observed during various shifts 1 6 over a period of three weeks. Observations of Child Life Worker (1 week) and Therapists (1 week) followed. The first phase of direct involvement in the field was concluded with observations of residents and senior physicians (2 weeks). The Social Worker was not part of the direct observations at this point because several staff changes were taking place at this time. The conduct of the observer had to be carefully adapted to the professional groups and the situational context. This made variations in behaviour as well as in clothing necessary, e.g. wearing a lab coat while observing See chart in the chapter "6.3.8. Observing the Nurses". Conducting the Inquiry / 67 physicians. 1 7 The daily timing of the observer's presence was adapted to the working hours of the respective staff member. Formal follow-up interviews were made with all staff members who were observed. These interviews were held in the framework of feedback sessions in their respective office in which specific attention was given to the influence of the observer on their work but it was also an opportunity to clarify issues arising from the observations. Staff interviews were generally recorded via notebook. This avoided the threat of tape-recording which could raise the fear that they would leak out and could be used against them within the professional hierarchy. 4.4.3. Second Phase: Parents and Children Observations of parents and children were combined over a time period of almost six months, which included five months of direct observations in the setting. Initially two weeks were spent on the ward without being involved in case studies as an introductory part of general observations. During this time period almost two hundred different children were admitted to the ward. Most of the parents and children had informal contact with the researcher. Observations of the Social Worker (1 week) were conducted immediately after the conclusion of the studies involving parents and children. See also the chapter "5. Participant Observation: A personal Account". Conducting the Inquiry / 68 Parents The research project was introduced to the parents who were considered for the case studies due to their child's age and stage of the illness by the senior physician who was assigned to the case. This usually happened after the diagnosis had been established. The physicians signed a consent form1 8 to signal their agreement. Then I introduced myself personally to the parents and gave them a written statement1 9 explaining the aims of the research and asking for their cooperation. It was made clear that the study was not involved in any aspects of the medical treatment. The parents who participated in the case studies had to give consent for the observations of their children as well as themselves. Parents were told that their consent could be withdrawn temporarily or permanently at any time. I stayed in the background as much as possible to achieve a "wallpaper effect", which means that the researcher became almost part of the physical background due to the uninvolved approach. Arrangements were made with the parents to ensure that they did not feel bothered by the length of the researcher's presence. The observations soon became part of the daily routines. On several occasions I passively resisted efforts to draw me into a helping network which would have influenced coping, communication, or other processes. When important meetings between parents and staff* were set up, I also arranged to take part in them. These sessions involved mainly nurses and/or physicians and parents and dealt with the implications of the treatment. For example, in one case the father had decided to take the child out of hospital ~™ See Appendix 1 9 See Appendix Conducting the Inquiry / 69 and nurse clinician and head nurse talked with him about the care at home as well as emotional issues. Parents participated in informal and formal interviews. Formal interviews were held upon request of the observer with the parents who were involved in the case studies after the completion of the first treatment phase in the hospital. If possible, these interviews were conducted at the respective family's home in order to include their perspective within the context of their familiar environment. Three of the four parents participating in the case studies were interviewed during home visits which were tape-recorded, transcribed, and analyzed. A copy of the transcript was made available to the parents for further comments. The initial contact between observer and parents who were not part of the case studies usually developed in a casual manner. Parents often learned about the research from other parents and became more interested which triggered questions. Some became curious about this person who was taking notes all the time. This initiated many informal conversations and gave me an opportunity to introduce myself. After an initial contact had been established and parents had been introduced to the research project they were asked if they would like to share their own experiences with the observer who was interested to record their perspective. This lead to several more intensive interviews which lasted between one and two hours each. Those interviews mainly involved the mothers, because they constituted the prime parental caretaker in most cases. If possible the fathers were also included. While a focus on parents with children who were in the initial phase of the treatment was maintained, experiences of parents whose children were in the final stages of the treatment were also included. In fact Conducting the Inquiry / 70 three children died shortly after long interviews with their mothers had been conducted. The sixteen formal interviews involved fifteen different families. Usually they were conducted in a separate room, e.g. residents' office or parents' lounge and involved only mother in nine, father and mother in three, and only father in two instances. One additional interview was made with one mother who wanted to address a matter of her concern in more detail upon her request. Four interviews took place in the child's room. One interview took place at a house where parents, who did not live in the city, were able to stay during their child's illness. Three interviews involved children over ten years of age. The interviews were recorded with the help of a notebook during the conversation. The resulting notes were then reinforced by additional expansions immediately after the session. There were also follow-ups to several interviews when parents told the observer additional experiences. In addition several general meetings of parents were attended with their permission. There was a weekly meeting for parents, which was offered by the Social Workers on the ward. This afternoon meeting was attended usually by a small group of parents, but it was an opportunity to establish further contacts. During the study parents organized a self-help group which was part of the Candlelighters. 2 0 Their monthly meetings, which were held at the hospital, became part of the general observations. *° The Candlelighters are an organization of parents of children who have cancer, who have parent groups in many North American communities. They also publish a monthly newsletter. Conducting the Inquiry / 71 Children The observations of children varied according to their respective ages. I introduced myself to the child in question and requested his/her consent to my presence2 1 after I had received consent from the parents, but it was up to the child to give or withdraw final permission. The individual child was given the opportunity to decide about my presence each time I entered the room. In most cases the first introduction was done by the parents or health professionals known to the child. While undertaking observations focused on individual children other events on the ward were also recorded keeping in mind the perspective of the child. Informal contact with many other children on the ward was also established. During the case study observations interactions involving other children in the same room could also be observed very closely. This involved a total of twentytwo children who shared the same room between one and twentytwo days. Only one child from the case studies, who had a short hospital stay 2 2, stayed in the same room while the others changed two to three times between single, two-bed, and four-bed rooms. Being with the children without communicating with them might have been perceived as disturbing. Therefore I sometimes engaged in minor activities with the child such as playing games, casual conversations, etc. if the situation required this. However, it was always my aim and attitude to stay in the background as much as possible and perceive communications, events, etc. from the perspective of the child. I was present on the ward at regular times during "2~1 See "Children's Consent" in the Appendix. 2 2 See chapter "Children" for more details. Conducting the Inquiry / 72 the week. A typical observation day began when medication was administered and breakfast was given until supper was served. This seemed to be the timeframe for most important interactions, which was confirmed by occasional observations during evening hours and on weekends. 4.5. RECORDING PROCEDURES The observations as such were recorded according to the perception of the observer. The observed verbal and nonverbal reactions were recorded in writing, as well as the circumstantial aspects, e.g. noise level, activities, place, etc. This part constitutes the factual observations. However, all activities take place within a dynamic interpretive context. All the observations are also influenced by the observer's perception. Therefore an additional record was kept which included subjective statements from the observer's point of view, i.e. assuming sadness, experiencing stress, tiredness, etc. With respect to these observations inferences could be made on the actual background of the recorded communications. These different observations can also be seen as external and internal observations, where external refers to the description of behaviour and internal addresses the experiences of the situation. The participant observer has inherently a dual role, to participate and to observe. At the same time s/he serves as the instrument which records and interprets. These functions must sometimes be separated for analytic and evaluative purposes although they are combined in one person. The participant observer assumes a dynamic role which should elicit access to the meaning of complex human interactions. Conducting the Inquiry / The Notebook L E F T SIDE Contents: Secondary Observations Explanations Comments, questions, hints Personal Feelings Evaluations Physical Setting Supplementary Space Examples: supplementary notes written some time after the actual incidents MSI = Medical Student Intern, meaning of terminology, etc. shaky voice - anger? looks helpless, loud voice as way of coping? feel tired, difficulty concentrating seems to be sad, does not seem to cooperate drawings of floorplans with explanations and descriptions additional primary and secondary observations RIGHT SIDE Contents: Primary observations Examples: descriptive records taken immediately or just after an incident containing: - literal records of communication - summary records - detailed reports about activities - descriptions of behaviours - information about location Timing regular records of time intervals Conducting the Inquiry / 74 Different aspects of observation were reflected in the field notes.2 3 There were quotes and literal records of people in the setting, but sometimes also nonverbal expressions of emotions were important for an understanding of an interaction. Perceptions of the observer were also clues to the meaning of certain communications. Therefore an observation of the observer was also conducted. Self reflective records were taken regularly and recorded on tape. In addition regular meetings with a psychologist took place during the observations in order to keep a record of changes within the observer's perspective. Those records have led to an additional personal account of the observations.2 * The participant observer has to make several judgements during the analysis regarding the significance of the things s/he observes. It is the role of the researcher to organize the overwhelming amount of information and be theoretically alert. This means that the structure of issues evolves as a theory from the setting (s.a. Glaser, 1967). Basically two levels of significance are relevant: significance highlighted by persons in the setting and significance attributed by the observer. Both derive from interactional processes and therefore include personal bias of the participants. A staff member may communicate something to the observer because s/he wants to direct the observations in a certain way in order to receive a more favourable description of his/her own role. The observer on the other hand has preconceptions and may reflect only those instances which suit them. Several steps were taken to address the issue of significance: First, decisions on significance in this research project were linked the question of representativeness. For example, issues highlighted by individual 2 3 See tabulation of "The Notebook". 2 * See chapter "Participant Observation: A Personal Account". Conducting the Inquiry / 75 members of one group were examined with other members of the same group in interviews or by shifting the focus of observation to the object in question. Second, the observer was object of explicit self-reflection as intrinsic part of the data collection. Personal bias were recorded as feelings, ideas, opinions in field notes, reflective tapes and by becoming observed through the special set of interactions with a psychologist. Third, the processes of data collection were made explicit and extensive samples should enable critical readers to make their own evaluations. This process oriented character is in line with concepts of symbolic interactionism. It has to be taken into account that the explicit immersion in social processes become the basis for new understanding and knowledge in this study rather than the notion of reflecting an independent notion of truth. 4.6. POST FIELDWORK ANALYSIS It has been mentioned before that an analysis within the ethnographic framework is an ongoing and sequential process involving reflection and examination of issues (s.a. Johnson, 1975; Spradley, 1980; Hammersley and Atkinson, 1983). This was done by marking issues in the notebooks, reflective note-taking and tape-recording as mentioned above. However, some key decision still had to be made, especially how the information could be presented. A separate notebook with research ideas which were put down during the field work contained some additional ideas for this problem. The field notes were analyzed several times. At first issues were simply noted, identified and grouped in to a separate book with a brief content description. This was basically a more thorough continuation of the analysis which had taken place during the fieldwork. Then an organizational framework Conducting the Inquiry / 76 was established which addressed communication between the various group formations, gathering of information, and reflection of the observer's presence. The emerging issues were checked again against the descriptive notes from the fieldwork. Supplementary issues such as professional goals or rewards were added in the accounts of hospital staff because they seemed to be influential for motivation. It also emerged that treatment procedures such as lumbar punctures or bone marrow aspirations were a major focus for medical staff, parents and children. Therefore they are described in more detail. During the fieldwork an effort was made to follow the handling of information through the various groups of persons in order to look at the differing degrees of importance which it obtained. This was included under the topic information, e.g. the discovery of a tumor (in the chapter "Nurses"). Particular problem situations covering several fieldwork sessions were also included if they seemed to represent important concerns which had been identified in the setting, i.e. a child with nightmares who had not been told that he had Leukemia representing issues of the awareness context (in the chapter "Nurses"). A special note was made whenever the observer was addressed during interactions. The first idea for the final presentation was to give composite daily accounts for every staff member. However, this was discarded because too many issues would have to be put into one day's account, which would make it less representative of actual daily routines. In addition it would be difficult to cross reference issues concerning parents and children. The structure of intergroup relations evolved as the scheme for data presentation. This makes it possible to compare various categories of interactions and still leaves space for direct field Conducting the Inquiry / 77 notes which provide informative details. The analysis of the data is presented in the same sequence as it was collected. Literal quotes and scenes from the setting are included in order to communicate the atmosphere of the setting as well as the attitudes of the persons who were involved. A l l names have been changed in order to protect the identity of the persons who provided the data for this study. The general conceptual framework of this study has been made explicit in the preceding chapter. The details of recording procedures and analysis of the data make the conduct of this study and the analytic processes transparent and should permit a high degree of replicability. Ethnographers typically become involved in a setting and try to understand the different patterns of behaviour and communication between the people involved in it. Interpretations do not follow preconceived definitions, rather they evolve from the fieldwork. Van Maanen (1983: 255) states: "It is in my view that we are best thinking of qualitative research in terms of some of the organizing principles surrounding the the activities (and topics) of those who do the work." Generalizations are built from the ground up from the data of the setting under study. The researcher has a crucial role in gathering the data necessary to understand and interpret the organizing principles of activities. The perception of the observer and researcher is also very important for others who read the interpretations. Therefore multiple reflective and descriptive accounts have been provided in this study which focus on the observations themselves. A whole chapter (Participant Observation: A Personal Account) addresses the process of the observations and the perceptions of the observer. In addition there are Conducting the Inquiry / 78 reflective accounts (e.g. Observing the Nurses, Children, etc.) which highlight issues of observational conduct and the experiences which were made during the observations of a particular group. These chapters should enable a reader to understand the information which is presented not only as a result but also as a process. 5. PARTICIPANT OBSERVATION: A PERSONAL ACCOUNT In this study the observer was a tool for data collection. A subjective account of the observer is included which shows the evolution of the study. It may also make personal bias and experiences more transparent and help others in their assessment of the findings in relation to other similar studies. It is meant to facilitate a more objective evaluation. I have already referred to the origins of my personal interest in children with cancer which began with the experience of cancer in the family and led to my earlier work in this field in Munich. Although the study was a dynamic process, several stages can be distinguished, each with its own focus and difficulties. They are addressed in this account in order to provide additional understanding for the context of the study and the interactions relevant for its conclusions. 5.1. STAGE 1: PREPARATIONS There were challenges by various levels of the settings which were involved. The first hurdle in the direct approach to the actual research was access. Being a doctoral student getting access to a hospital setting involved five steps. I had to get permission from various people: 1. The research committee of the university which supervises the research project all the way and is important for its academic approval. Because my research was interdisciplinary the research committee grew until it consisted of seven members from different faculties. Organizing meetings required considerable effort and was very time consuming. 2. The Human Subjects Committee of the university looks at the ethical 79 Participant Observation: A Personal Account / 80 aspects of a research project and is especially interested in consent letters. 3. A medical authority in the hospital is probably the most important person in order to get access to the setting, which seemed be closed without the appropriate insider support. Personal contact and interest in my research proved to be very helpful. 4. The administrative authority in the hospital was represented by a research committee which screened all research involving patients or hospital facilities. This committee did have some concerns with respect to my methodology and I was invited to a meeting to answer some questions, e.g. what results did I expect and would they be generalizable, etc. Representatives from different departments were present. After the meeting my research proposal was circulated and some changes were suggested to my consent letters emphasizing that the hospital had nothing to do with my research. These changes, which seemed to be precautions against possible legal consequences or detrimental publicity effects, were incorporated into the consent letters. 5. The observed persons were hospital staff members, parents, and children. Staff members gave verbal consent. Parents had to give written consent for themselves and for their children. Children were asked individually if my presence was acceptable and told that they could tell me to go away whenever they wished to do so. Some of these steps incorporated several smaller steps; for example some committee members had to be approached individually as well as during the formal meetings. In the hospital there were also the lines of professional hierarchy which had to be respected. Whenever I wanted to observe a member Participant Observation: A Personal Account / 81 from a particular professional group, I was introduced or asked to introduce myself to the head of the department. Getting permission was an ongoing process during the different stages of this research project. 5.2. STAGE 2: THE PRELIMINARY FIELD WORK The actual study in the hospital setting began with a preliminary study which became the initial part of my data collection. This made only a partial permission necessary and postponed some of the administrative hurdles. Thus the field work can be categorized into a semi formal level (preliminary study) and a formal level which involved all the levels of consent mentioned above. The primary access to the setting was achieved through a personal contact with a medical authority at the hospital. Major advantages of the preliminary field work were that I established myself in the setting and made personal contacts. I could also train myself in the observation and data processing skills which were necessary for the field work in this particular setting. Due to my academic background in education it was arranged that the observations in the setting started with the teachers, who represent the educational side. A senior member of the Faculty of Education helped me to get access to the hospital school. After I had made initial telephone calls and presented myself to the acting head of the hospital school, I was initially allowed to stay with different teachers for certain days of the week. I soon learned that the school was not part of the hospital hierarchy and the legitimacy of my presence had to be taken into account. One or two of the teachers raised the question of the need Participant Observation: A Personal Account / 82 to have my work with them approved by the School Board, but after I happened to meet the school principal in the hospital and discussed my work with him this suggestion was not pursued. I was able to overcome the first apprehensions of the teachers. However, when they raised questions about how long I would be staying, I began to wonder how long the outsider would be tolerated. The teachers knew that I had an academic background in education which helped to establish a collegial atmosphere. They involved me occasionally as an assistant in teaching activities. However, I also sensed a fear of supervision when teachers tried to justify their activities in my presence. The whole setting was new for me and I had much to learn. The teachers sometimes engaged me in their classroom activities. I was asked to supervise a child, help out when a teacher was sick, etc. The things I had disclosed about my professional background were used to involve me. Although I had wanted to be a non-participant observer I did not want to refuse, because I felt that I still had a somewhat fragile position in the setting. Later I was more careful with disclosures about my professional background. The observations of the nurses which followed were a complete shift of perspective within the setting. They involved the medical authority in the hospital, which at that time primarily meant a senior haematologist/oncologist. When I was introduced to other persons no one really questioned my presence if I was attached to another professional. Interestingly, at the formal level of my fieldwork, which involved basically parents and children, the nursing hierarchy felt somewhat ignored in the process of seeking and getting permission. However, during the preliminary field work I began my observations of nurses with the Head Nurse which linked me with a high nursing position on the ward. With Participant Observation: A Personal Account / 83 the help of the Head Nurse I was able to get myself introduced to the ward and to the persons related to it. Observing nurses also made a change in my appearance necessary, if I wanted to keep up my unobtrusive role. 2 5 Whereas the teachers wore street clothes the nurses wore uniforms and were subjected to a dress code. Consequently I had to change into some sort of uniform in order to stay unobtrusive. I began to wear a white lab coat which also brought my appearance closer to the physicians. Blending in with one particular group also was a limitation in some respect. I would only receive communications which were addressed to members of this group. In addition there was no opportunity to ask members of other groups, e.g. parents, more directed questions without changing my role. Most of the nurses were female, but most of the physicians were male. This added to my physician image in the perception of some parents. Parents sometimes tried to consult me with medical questions and at one point even a nurse came to me and asked me if I would do the bone marrow aspiration. Of course I directed those requests to other persons, but it showed how much symbolism was involved (white coat & male = Doctor). I did not wear a name tag which all hospital employees had to wear and I was usually introduced by my first name followed by an explanation of my research. The Head Nurse helped me to set up my observations of the other nurses on the ward. The nurses usually consented. However, I began to notice that a certain pattern evolved with respect to my field work. 1. A brief introduction of my project to the nurse I would be observing was followed by some questions, e.g. "Are you doing this for the university, for "2~5 See discussion about unobtrusiveness in chapter 4.2. Participant Observation: A Personal Account / 84 a degree?", etc. Later when nurses became used to my presence they sometimes asked or made jokes, e.g. "Who are you following today?", "You like her, eh?" 2. This was followed by a period of getting used to my presence. The nurse would do her work but look at me from time to time or ask "What do you want me to do?" I usually said that she should ignore me but should do it so she could feel comfortable with it. 3. A couple of hours into the day a reorientation took place which was a more detailed version of the initial introduction and was usually initiated by the nurse's question: what are you actually doing? This was frequently paired with questions like " A m I doing things right?" A t this point I explained my study again more thoroughly and emphasized that I was not there to evaluate their work but rather wanted to understand it and a nurse's perspective. 4. Then a normalization period followed where relatively little attention was given to my presence. Sometimes jokes were made in the communication with other nurses, i.e. "he is actually from the administration" or as an ironic precaution "he is writing down everything you say". 5. Late during the shift or sometimes in combination with the reorientation my motivation was explored, e.g. "why are you doing this?" I frequently told at this point that my brother had died of cancer which sometimes initiated a conversation about their own motivation. 6. A t the end of the day there was usually mutual feedback. I tried to find out if there were any tensions related to my presence and if it had influenced the work. The persons I observed sometimes asked in turn if I had found it useful or in a more ironic way "was it exciting for you?" The questions during the reorientation puzzled me at first. Why did more detailed questions about my research appear again after I had explained my study and had been with that person for some time. I looked more thoroughly at my introductory statements in order to find out if I could clarify those questions at the beginning. However, after this pattern had taken place several times I realized that it was just part of the information gathering process. In the beginning something new is seen from the outside and then the mind turns it around for a while until more clarification is needed. This process seems Participant Observation: A Personal Account / 85 somewhat parallel to the process which has been reported from parents who receive the diagnosis of cancer in their child. Their situation is complicated by the severity and the emotional impact of the information, however their questions also need time and surface later when their mind has been able to deal with the initial situation. Variations of these phases occurred during the observations of other staff members later on as well. Being with nurses made it necessary for me to learn many new acronyms and expressions. I did not know what "getting a bone marrow", " L P " , " B P Q I D " 2 6 meant. In addition I had to learn the names of a number of medications and that the degree of their side effects made the distinction between a good drug and "horrible stuff. Some nurses involved me in their activities, e.g. helping to make the bed. However, I was less involved than I had been with the teachers. When important conversations were going on and there was a great deal of movement, it was difficult to remember things correctly, particularly since I could not record them immediately. There was not enough time to write while my head was loaded with things I wanted to put down on paper. The nurses usually introduced me to the parents or patients when they went into a room. These introductions varied from saying that I was doing a study to simply "he is with me". Parents never objected to my presence. Teenage patients, especially girls, were sometimes shy when a physical examination took place. Then I stayed further in the background, behind the curtain which was put around the bed, or even remained outside of the room. In one isolated incident a mother reacted to my lack of participation and A mixture of English and Latin for: "Bloodpressure four times daily"; see list of acronyms in the appendix Participant Observation: A Personal Account / 86 said: "You look like the most useless guy I've ever seen." At first I was concerned when it seemed that my lack of participation could provoke angry reactions. I learned later that this mother was very direct, and in fact she had made an accurate statement from her perspective of need. She showed quite an interest in my study after I had been able to explain it to her. I began to gauge my activities according to the minimum level possible relating to the current situation. This required some sensitivity, and experiences like the one mentioned above helped me to find the appropriate behaviour for the setting. It was very interesting how important my notebook became for others. Many asked me what I was doing when they saw me writing. One nurse whom I observed became quite upset when she noticed that I was writing while she was looking for clean sheets, something she considered unimportant. Although I explained to her that I sometimes needed to empty my head and that I was not looking at how many sheets she took out or if she took too much time for "unimportant" things, she remained suspicious. I often saw suspicious looks at my notebook and sometimes a nurse would come, look at what I was writing and ask "What do you write". I did not hide my notebook or my activity. I explained my study, whenever someone asked me. However, it seems that keeping a record makes people suspicious because they feel that they may be made accountable for something, and that their position in the hierarchy of the organization may be threatened. Physicians never asked those questions. It seemed to be important that I had a proper role within the setting. After I had concluded my observations with nurses I sat in a corner on the ward for one day and recorded the activities near the nursing station and the number of people who were passing by. This was the day I received most Participant Observation: A Personal Account / 87 attention. I did not seem to have an appropriate role, in fact I was not doing anything in terms of care, and I was taking notes. Many nurses and other staff came to me after they had watched me for a while and asked me what I was doing. It was a good opportunity to explain my study to a number of people and I also wrote a short note in the "Communication Book" 2 7 for the nurses. It was also an indication about the incomplete communication between staff. My presence, although mentioned frequently, had not been explained to all nurses on the ward. One must of course take into account that my work was not directly related to the immediate care and thus I did not have a functionally important role. Because I did not have a function within the system, my position was somewhat tenuous. If there had been a problem or a complaint, I could easily have been asked to leave and my study would have been jeopardized. Therefore I was careful not to step on anyone's toes, which sometimes made me tense and very cautious. This was especially true during the first preliminary field work of the project. After the observations of nurses I followed the Child Life Worker on the ward. This had been prearranged with her. I was introduced to the head of the department who seemed to be very interested in my study. This shift of professions again involved quite a shift in perspective and outlook. I got rid of my white gown and wore normal clothes. I felt relieved that no more painful treatments were applied. Child Life activities take place in a small separated area on the ward. Because the activities involved play and interesting toys children appeared to be more cheerful. Nurses who were passing by frequently " 2 _ 7 see chapter "Nurses" Participant Observation: A Personal Account / 88 waved at children or stopped and said "give me a smile". Although nurses often had to help adjust IVs or gave oral medication, they now seemed more as intruders into the private sphere of the children. During the coffee and lunchbreaks Child Life Workers from different wards sat together and bits of information from their respective situations were exchanged. Most of the conversations dealt with casual personal issues. I felt quite accepted and my presence did not seem to cause any problems. Being with Child Life gave me a more playful approach to the children. In fact it was the first time that I was able to spend longer periods with them. Although there was a constant coming and going in the play area the children were more stationary. I could observe how children reacted differently to the various persons passing by. I was happy to see some "normal" reactions of children like jealousy of each others toys, or interest in many different things at the same time. The narrow space of the play area sometimes made it difficult to be in there because of the physical limitations. After my observations of Child Life I spent time with the "Physio" (Physiotherapist) and the "OT" (Occupational Therapist). Their work led me away from the ward and gave me some insight into other parts of the hospital. Suddenly the ward I had concentrated on became just another part of the hospital. Each ward had its own distinct atmosphere although the physical setting was often similar. I also had to adapt to the different problems and dynamics of respective departments and their roles within the whole hospital system. Some Occupational Therapists and Physiotherapists share the same office space. However, the heads of the departments have separate offices. Differences in personalities seemed to be issues within the respective departments. The Participant Observation: A Personal Account / 89 workplaces of the therapist were spread throughout the hospital. Although there were treatment rooms close to the offices, many "inpatients" required treatment on their ward. There were also two gyms near the hospital entrance and between wards. This decentralization seemed to make the members of the department somewhat more loosely connected. Following the physicians required again a shift in appearance in order to stay unobtrusive. I began to wear a white lab coat again. Physicians did not inquire very much about my research. It seemed that once I was with them I was just there as a part of their activities. Consent did not seem to be a problem. They were used to medical students and they probably regarded me as just another one. Being with the physicians opened my eyes with respect to the small amount of time that they actually spend with patients and parents. I was somewhat disappointed that their job seemed to be to manage medical knowledge. A • close doctor-patient relationship seemed to be of secondary importance. I took part in many meetings which I sometimes found difficult to follow when they involved a great deal of medical terminology. There was a split in the hierarchy between senior physicians, the haematologists/oncologists and the residents. The residents were considered to be in training and there were regular teaching rounds where they had to present cases to an audience of physicians from different departments. Discussions and disagreements took place in medical rather than personal terms. The senior physicians were the ultimate decision makers and somehow the revolving points in the hierarchy of the ward. The residents spent more time on the ward and signed most of the Participant Observation: A Personal Account / 90 medication orders. Sometimes I had the impression that they were struggling to come to grips with the responsibility of signing orders and on the other hand learning what they actually were dealing with. Protocols and different calculations of various medications combined with a lack of sleep due to long hours in the hospital did not contribute to sound decision making. Some residents vented their frustrations about this. The long hours also led to exhaustion which made them care less about personal concerns of patients. A t one point I considered spending the whole shift of up to thirty-six hours with a resident in order to study the effects in more detail. This would have given me some first hand experience, but it would certainly have been difficult to keep up the notetaking in a sensible way. The problem of exhaustion, however, may be worth some more study. On the other hand I began to understand how they would come to look at their profession as just a job which interferes too frequently with their personal lives. Things had to happen quickly with minimal effort in order to have enough strength to cope with the long hours. The language which refers to patients as cases of specific illnesses became understandable. Personal factors seem to be functional parameters which either contribute or are detrimental to medical progress. When the senior physician had meetings, which sometimes took place at a different hospital, I was initially concerned about my reception. However, it did not seem to be a problem since I was in company of another staff member. Sometimes the physicians forgot to introduce me and commented later that they had forgotten that I had been there. I took this as a positive sign for my unobtrusiveness and the minimal effect of my presence on the setting. One interesting observation was that during lunch or coffee breaks the Participant Observation: A Personal Account / 91 professions rarely mixed. Nurses usually sat together with other nurses and physicians with physicians. The next level of sharing a break would be the respective ward if there was no one else available. One more step down involved the field one was working in, i.e. inpatient and outpatient cancer clinic would sit together. The physicians were commonly from different areas when they sat together during a break. I never saw Social Workers share a lunchbreak with the nurses. Child Life Workers did this from time to time as well as junior physicians. After I had observed those professions there was a break in my field work. I had not observed the Social Workers yet, because they were in a transition between old and new staff. Initially I considered to begin the next phase of observations with the social worker which could give me at the same time an introduction to the parents. However, I later decided that this might attach me too closely to one profession in the setting for the eyes of the parents. 5.3. STAGE 3: THE FORMAL PROPOSAL A break was necessary, because for the observations of parents and children I had to go through the appropriate channels of getting consent. M y committee asked me to prepare a more formal proposal. From the perspective of the university administration my research was based in education due to my academic background. However, the interdisciplinary character became more and more obvious and my committee has to reflect this and expanded accordingly. This caused organizational and academic headaches. Meetings were very Participant Observation: A Personal Account / 92 difficult to arrange. Different committee members represented different faculties and backgrounds. During the preparation of my proposal and throughout much of the research I felt frequently torn between the various demands. My proposal expanded until it was fairly extensive. I received mixed responses and prepared a shorter version, which was finally accepted by the research committee. After this I was able to get the official consent from the various other committees. They had their own routines and various minor changes had to be made which were nevertheless time consuming as a process. I felt that I had to defend myself constantly for the unsettling undertaking of my research. This whole process took several months to complete. Getting approval from the different committees was quite an interesting process. Three authorities were formally involved (University Research Committee, Human Subjects Committee, Hospital Research Committee), and all changes would have to be approved by all of them. The submissions to the various committees had to be planned carefully in order to ensure that changes to the proposal which were made by one committe would not interfere with the approval of another committee. This could have caused major delays. The Human Subjects Committee of the university looked at the ethical issues of my research project. It turned out that the Hospital Research Committee was also concerned about the methodology in addition to ethical and legal considerations. During a meeting of the research committee in the hospital I was asked what kind of generalizability my data would have and what my results would look like. The general atmosphere was friendly and the committee appeared to be interested. A while later I was told that some changes to the consent letters, which had already been passed by the Human Subjects Participant Observation: A Personal Account / 93 Committee of the university, had been suggested. The meeting of the research committee took place only once per month and because some members were sometimes not present all communications were sent around for approval. In the end I had to make minor corrections to the unchanged parts, because different persons had suggested changes which had to be adapted to the actual text. The procedures showed an example of the different lines of authority which are present in a hospital setting. The changes which were made to the consent letters were administrative safeguards against legal implications of my research. I had to emphasize again that this research was no part of regular hospital activities. Finally the formal approval was given and I was able to go into the setting and begin my fieldwork officially, which still required approval from the persons I actually wanted to observe. Parallel to those struggles another concern developed which became my constant companion. I needed money to live while I was doing the research and therefore multiple applications to various grant agencies were made. However, the lack of success was disappointing because cancer agencies did not seem to be interested in anything but medical research and as a foreign student I was not eligible for many government grants. The financial perspectives were a constant strain and in the end limited the research project. 5.4. STAGE 4: THE FIELDWORK When I first entered the setting again I was careful to explain my project to the nursing staff. There had been quite a turnover and most of the nurses were relatively new. Even the Head Nurse had changed. I wondered if I was looking at a socially different setting. However, although different persons had created Participant Observation: A Personal Account / 94 some change, the ward seemed to be buzzing in its usual routines. Initially the new Head nurse felt left out in the process of information and getting consent. Although nursing had been represented in the hospital research committee and I had gone to talk to the director of nursing, the information had apparently not been passed on. The Head Nurse wanted to take my research as an example of a lack of communication within the hospital administration. After I had explained my project and told her about the administrative processing which I had gone through I asked her to be somewhat careful because I was eager to start my fieldwork. I explained that I was afraid of more delays or - even worse - that parts of my research would be put in jeopards', because I felt that my position in the hospital setting was not very strong. We agreed that the nurses should be informed and I explained my research to several small groups of nurses on the ward. I gave them the consent letters to read and said that I would try to be as unobtrusive as possible. Several nurses were obviously informed about qualitative research and asked interesting questions. It was important for me to get early access to record the first difficult adjustment phase. However, this coincided with an emotionally very difficult time for the parents, because they had to cope with their own feelings. Although I had made up an introductory statement I did not feel totally comfortable myself in asking the parents to participate in a study. My efforts to find the right approach were probably also reflected in the presentation of myself to the parents. Initially two parents gave the consent letter back to me a little while Participant Observation: A Personal Account / 95 later and decided "not to take part in the study." (A 28) "We have talked it over and I think we'll pass on this," said one father and handed the consent form back to me. Bjbrn: "That's ok. If you want to talk sometime later, I will be around." I was somewhat disappointed because I was eager to start, but any setback is also a challenge to learn something new. Later I discovered that the reasons for these refusals were mainly related to the timing of the request. Over time I developed a relationship with the parents in which they talked to me about their concerns, which enabled me to understand reasons for their initial rejections. One couple had just received a treatment protocol which they had to sign prior to my introduction. In this protocol their child was given only a 30% chance, something they had not been aware of before. Parents said later that they had been in a state of confusion and wanted to withdraw and did not want to talk to anybody. Other parents referred to their emotional state as "being out to lunch". Rejections at this point were disappointments for me, because I wanted to get going with my case study observations. I could relate to the feelings of the parents, but so many variables were out of my control. I was afraid that the whole study might collapse if I could not get over this hurdle. It made me even more cautious in my approach. Another problem with attaining early access was that physicians did not sign their consent form before they were definitely sure about the diagnosis. This could mean that a couple of days passed while the child was being tested. In Participant Observation: A Personal Account / 96 addition I would then meet the parents at the most difficult point, just after they had received the bad news. In one case I was able to establish an early contact with the parents of a newly admitted child who were quite interested in my study. This enabled me to record some pre-diagnosis behavior of a hospitalized child on the ward. It turned out - luckily for the child - that there was no cancer. There had just been some abnormalities in the blood counts which could not be explained. This time the researcher in me was disappointed and the human being was happy. I spent some weeks establishing my presence on the ward. I was able to observe many interactions between children in the play area and elsewhere on the ward, but I felt a bit like an intruder, especially in the patient rooms. It was frustrating that I could not proceed with my case studies right away. Some of the time I was not able to do anything but be there and stay out of the way. However, I felt that it was important to force myself to go to the hospital regularly - against an increasing inertia - in order to establish my presence as nothing unusual. During that time I also established some contact with the Social Workers on the ward. They organized regular rounds for parents once a week in which I participated. This enabled me to get to know some of the parents although they were mostly parents whose child had been diagnosed some time ago. Some parents introduced me to other parents and I was able to interview some of them. Finally, after mentioning my interest again to the physicians, and asking them to discuss it with the parents since I couldn't be be present at their first meetings, a family agreed to participate. Since the family was quite distressed Participant Observation: A Personal Account / 97 after learning the diagnosis I waited another day before I introduced myself and asked them if they would consider allowing me to be present as an observer. They agreed to participate and when I came the next day I gave them the consent form, which they signed. On the one hand it was a relief that I could finally begin to study, but on the other I knew I had to be careful not to jeopardize it and put to manj' demands on the parents through my presence. I also introduced myself to the child and whenever I came I asked child and parents if it was okay for me to be there. To my relief it worked out fine although both parents were there most of the time which meant that the child was usually accompanied by three adults. At the beginning the child was alone and I sat on a chair at the other end of the room where I hoped to be out of the way and out of sight most of the time. When another child was admitted to this room I sat down under the TV which was mounted high on the wall. The TV turned out to be quite disturbing for me. It was switched on most of the time and sometimes made it difficult to understand conversations. When the children were alone in their room and a remote control was available then some would play with it and change the channels frequently or turn it really loud. Nurses who came in rarely seemed to be concerned with which channel was on. They were only there for a short time. If I could see the TV then it distracted me occasionally from the actual observations. I had to force myself to redirect my attention. When I left the room and had a break I felt sometimes quite drained by all the TV noises. I wonder what effect it had on the children. Participant Observation: A Personal Account / 98 After the family was used to my presence I was included more frequently in conversation. I did not start the talk except in the mornings when I came in, but responded when I was addressed. The more time I spent in the setting the more everyone got used to me and I was more frequently addressed by staff. I sometimes sensed this as a threat to my unobtrusiveness. While walking around with parents or children I usually stayed a couple of steps behind them but prepared to step up to them when they wanted to talk or when they were at a door which they were holding open for me. I tried to be prepared for changes in direction or speed so that I was able to be with them without hindering them. Another consideration was the timing of my presence. In the beginning I was careful to give parents and children time to get used to me. On the other hand I wanted to catch important incidents which influenced mutual behavior and communication. Therefore I tried to be present during all medical procedures like lumbar punctures, bone marrow aspirations, and when the child received an IV. I was also limited initially by my own attention span which increased during the research. It turned out to be very difficult to plan anything. Scheduled procedures were delayed for several hours or changed in the last minute without telling parents or children. I felt somewhat in the same boat with them and I learned to understand what it meant to wait long hours for something to happen. During those times of waiting I could sometimes observe the processing of information. In the mornings before I entered a patient's room I spent some time at the nursing desk and wrote down patients names and room numbers in order to keep up with the changes. Since I had become familiar with the charting and Participant Observation: A Personal Account / 99 planning routines I was sometimes able to learn which procedures were planned for the day. Then I could witness the processing of information to the parents and from there to the child. As parents got to know their child's treatment protocol they sometimes were more aware than nurses about the procedures which were going to happen. Frequently I encountered my own ambiguous feeling with respect to the research. When the consent forms had been signed by parents I encountered the feelings of joy for the researcher and concern for the situation of the child and the family. Waiting for consent had already put me into a strange situation where I was on the one hand waiting for new children to be diagnosed and on the other hand I felt terrible considering the fate of childhood cancer. There was this split between the researcher and the human being, a strange distinction. This was also apparent in some situations during my observations when I wanted to stay within my objective and neutral observer role and felt on the other hand that there was a need for intervention. When does it start to be unethical just to observe and not intervene when things go wrong? Similar feelings with respect to coping came up when one child who had been one of my case studies suddenly died and I was able to start with a new case-study of a newly diagnosed child the next day. The researcher was happy because it fitted so nicely into my timeframe, but for the n being it was difficult. My presence also had tense moments. I could especially feel the tension during difficult medical procedures. I always felt as if I was walking a tightrope, one careless step and I would be out. During one lumbar puncture a child "would not cooperate", which meant Participant Observation: A Personal Account / 100 that the child was fighting the procedure by every means at his disposal. I witnessed the initial failure to perform the procedure. Finally the physician called a colleague and an "experienced nurse" who was able to force the child into the necessary position (which upset the nurse who was first present). Sensing the tension I checked with the physician and he indicated that he would "rather not" have me in there and added that the procedure was actually very simple if the child was held right. I stayed out of the room and was left wondering what an effort it took to perform such a simple procedure. If there had been a major incident where my presence would have been considered a nuisance or a threat I probably would have been in trouble with my research. Therefore, whenever I sensed that someone felt uncomfortable with my presence, I tried to talk to this person at an appropriate moment. When my study was underway and I had spent considerable time on the ward, the children I observed became quite attached to me. Although I was not involved in direct activities with them, my constant and non-threatening presence must have been comforting for them. The last child of my case studies was mostly alone in the hospital because his parents had to continue their professional work. I became the most consistent human contact for this boy and he became quite attached. He sometimes referred to my as "my buddy" or "my friend". At one point he gave me a Valentine card which said, "How, ....'bout being Valentines!" I felt that it would create a hardship for him if I just left. Therefore I stayed with him until he was discharged, especially since he was alone most of the time. He became more open with me and talked to me although I did not initiate conversations. He also became interested in my notebook and sometimes Participant Observation: A Personal Account / 101 took my pen and scribbled something on a page. When he was discharged I gave him a notebook - just like mine - and a pen as a present. 5.5. STAGE 5: ANALYSIS When I changed from one stage to the other I was usually looking forward to the different work which was ahead. The data collection had been concluded and I could go ahead with the analysis and put everything together. It was a new development and another step toward the completion of the project. However, after I had begun to analyze my field notes and transcripts, I soon felt overwhelmed by the size of the task. Threethousand pages of notes in bad handwriting plus transcripts and tape recordings had to be managed. Preset personal deadlines of .completion of chapters passed and my work did not seem to have a major impact on the amount of paper. A new sense of frustration about my own capabilities arose regarding the task to make sense of the massive amount of data. The analysis was complicated because findings in different parts of the field notes made reconfigurations of the evaluations necessary. They reflected the exploratory character of the study within a dynamic interrelated setting. In order to maintain comparability between the groups of persons who had been observed the chapters were structured in a similar way. Changes often had a series of implications within the network of this report. This again made the task to present comprehensive insights into the interactions in a hospital setting very complex and challenging. 6. HOSPITAL STAFF 6.1. INTRODUCTION A multitude of different professions are involved with the care of patients in a hospital setting. They are organized in different interrelated hierarchies. Admission into a hospital also means many new relationships. This begins with the receptionist and continues with nurses, physicians, technicians, etc. A child entering the hospital has to cope with numerous encounters with strangers who nevertheless seem to be very important. The setting itself poses many puzzles for parents and child. Only gradually they become able to unveil its mysteries and learn about the links between the persons they are interacting with. 6.1.1. The Social Setting When a child is hospitalized s/he usually stays on the ward which deals with particular illnesses, i.e. cancer. However, a few children were diagnosed of having cancer during their treatment for a different illness while they were in the hospital. After diagnosis they were then transferred to the Oncology ward for cancer treatment. Those children had to get acquainted with an additional group of hospital staff and different routines, which increased the number of new persons s/he was confronted with. The Oncology ward itself involved a considerable number of different professions. Directly concerned with various aspects of care were the following groups: 1. Physicians a. Haematologists, Oncologists, and/or other physician in charge of a 102 Hospital Staff / 103 patient, b. Specialists (when consulted), i.e. Radiologists (frequently), Dermatologists, etc. c. Oncology Fellow, d. Senior Resident (changes every two months), e. Junior Resident (changes every two months), f. Medical Students (MSI = Medical Student Internship); 2. Nursing a. Head Nurse, b. Nurse Clinicians, c. Chemotherapy Nurses, d. Registered Nurses, e. Licensed Practical Nurses, f. Unit Clerk, g. Aide/Porter, h. Student Nurses, i. Public Health Liaison Nurse (when consulted); 3. Technicians a. Laboratory Technicians (bloodtests), b. Radiology and other test Technicians (when consulted); 4. Therapists a. Occupational Therapist, b. Physiotherapist; 5. Social Workers 6. Child Life Workers Hospital Staff / 104 7. Psychologist (when consulted) 8. Teachers (according to children's age) 9. Dietitian 10. Housekeeping Personnel In addition the children frequently received radiation treatment, which took place at a separate institution a couple of blocks away. Sometimes parents brought their child there, but if a child was connected to an I V 2 8 an ambulance was called. Thus the child got involved with a number of other professionals: 1. Ambulance Drivers/Attendants 2. Radiology Receptionist 3. Radiology Nurses 2 9 4. Radiologist (physician) 5. Technicians (making a cast). Nurses were clearly the largest group and some professional groups or subgroups consisted out of one or two persons only. The number of professionals as well as their daily presence determined timing and conduct of the fieldwork. The observations focused on the persons on the ward which seemed to be most involved with the children and their families, while an effort was made to gain insight into agenda and conduct of the respective professional group.. " Z _ B Intravenous infusion, see appendix for acronyms. 2 9 The organizational hierarchy and qualification of the nurses involved with radiation therapy was not followed up during the short visits. Hospital Staff / 105 6.1.2. Observational Approach The various health professionals were the most organized group in the hospital. Their consent was important for the general access to the setting. Therefore they became the first group within the observations. Participant observation of several different health professionals who worked in a hospital with children with cancer was undertaken as a pilot study. This enabled me to get to know the setting as well as being introduced to the people and to adapt observational behaviour. Getting access involved personal contact with the respective staff members as well as consent by the professional hierarchy. This required introducing myself and the research project to the head of the respective department and to the various staff members who I wanted to observe. At this stage of the study, only verbal agreement was obtained which also involved a certain degree of tentativeness. Any conflict with the observer could lead to a withdrawal of privileges. The conduct of the observer had to be carefully adapted to the professional groups and the situational context. This made variations in behaviour as well as in clothing necessary, e.g. wearing a lab coat while observing physicians.3 0 Formal follow-up interviews were made with all staff members who were observed. These interviews were held in the framework of feedback sessions in their respective offices in which specific attention was given to the influence of the observer on their work but it was also an opportunity to clarify issues arising from the observations. Staff interviews were generally recorded via notebook. This avoided the threat of tape-recording which could be suspected to leak out and be used against them within the professional hierarchy. " 3 _ 0 See also the chapter "5. Participant Observation: A Personal Account". Hospital Staff / 106 Experiences with the observations of the respective staff groups and description of observational adaptations can be found in the last chapter of every account of a staff group. 6.1.3. The Structure of Analys i s All reports about the various staff members are structured in a similar way. They begin with an introduction to the respective professional group including their setting and professional aims. This is followed by a statement about their acquisition of the information which is necessary for their work. Then their relationships to other staff, parents and children are described and summed up as the perspective of the respective staff group. A summary of the observations at the end of every section gives some insight into the mode of data collection, including its difficulties, adaptations and observer influence. The accounts in the analysis of staff observations are in the same sequence in which the observations took place. 6.2. H O S P I T A L T E A C H E R S It is the purpose of this section to describe and understand hospital teachers within the hospital environment and display their perspective within the hospital setting. Since the children are allocated to a teacher according to their ages, differentiation according to age has been omitted in order to ensure anonymity of the teacher in question. All quotes in this chapter are direct accounts from the field notes unless indicated otherwise. Hospital Staff / 107 6.2.1. The School Setting There are five full time teachers in the hospital. Four teachers conduct classes in one classroom on the third floor. Teacher A teaches Kindergarten through grade 2, teacher B teaches grades 3 - 5 , teacher C teaches grades 5 - 7, and teacher D teaches secondary students.3 1 Teacher E works in a separate classroom in the Psychiatric Inpatient Unit on the second floor. All teachers are female.3 2 All teachers are employed by the local school-board, but they are attached to different schools (elementary school, high school). Teacher C is acting as the head of the school program. During the 1984/85 academic year almost 1600 children participated in the program. Their attendance varied from single days to several months. During the morning (9:00-11:00 hrs) teaching usually takes place in the classroom where often volunteers3 3 assist. In the afternoons the hospital teachers usually do "bedside teaching" (13:00-15:30 hrs). Teachers do not wear uniforms. A description of the classroom may give a general impression of the physical environment: The classroom is a large room on the third floor between the wards illuminated with neon lights. The wall facing the double entrance doors consists of glass windows and double glass doors which separate a corridor from windows and glass doors overlooking a patio. The other walls are covered with pictures, maps, big letters, notices, etc. apart from several bookshelves and cupboards. On the wall left from the entrance are several built-in cupboards and a sink. Four areas are separated by mobile room-dividers. In every area are tables and chairs 3 1 The descriptions in this chapter refer to teachers A - C. 3 2 This may be important because almost all nurses are female and mostly mothers stay with their children. 3 3 See subchapter "6.8.5. Volunteers". Hospital Staff / 108 which vary in size and arrangement, and mobile blackboards which are actually white. In two areas are individual desks facing the wall with boards on the sides.3 ' Across the corridor facing the main entrance of the classroom is the teachers office, a small room without windows, two tables, chairs, and several filing cabinets. 6.2.2. Teaching Aims In a document written for the school board the teachers formulated the aims of the hospital school (Teachers A - C): "The purpose of the hospital school program is to ensure that optimal development of the individual is achieved providing continuous quality academic programs while admitted to hospital, and assistance in arranging smooth transition back to the regular school program when the student leaves, so that the child through acquisition of knowledge, essential skills and positive attitudes can develop into a self actualizing, self respecting individual." In addition the following program objectives are listed: 1. To normalize a child's hospital experience by providing a valuable link with normal life, thereby reducing the distress of separation, illness and personal insecurity. 2. To keep the hospitalized child progressing at the same rate as his classmates, and to act as a liaison between the student and his school. 3. To individualize an instructional program, by adapting it to the student's ability, and by systematically working through the program on a one to At first the classroom seemed confusing, especially when classes were in progress. It gave an impression of coming into a large office, which was in this case more colourful than usual, where many people are talking and working and one feels slightly out of place. However the classroom did not have a cold atmosphere. Since there were no real walls between the different class areas one was always made aware by sounds or voices that there was something else going on in this room. Hospital Staff / 109 one ratio and to provide remedial instruction whenever necessary by assessing the needs of that student and producing a suitable program. 4. To keep abreast of new developments and innovations in the educational system as well as working with a variet3r of professionals within the hospital. The teachers told me that their major aim was to help children keep up with their education despite illness or injury. They said that they wanted to help with school and also give help with learning. One teacher said that she would focus on individual support which could be done better here than in school, because the classes are smaller. In addition they would "arrange placement3 5 if necessary." The main teaching aims of the Hospital Teachers may be summed up as stated in a description of the hospital school published by the hospital itself ("Speaking of Children" Vol. 9, No. 1 Summer 1984): "For all of them (the children), the school program works to create a normal, familiar environment within the hospital setting, helping children keep up with their education despite illness or injury." 6.2.3. Rewards It is important for motivation and engagement that the work provides rewards. Teaching in a hospital setting is quite a challenge due to the constantly changing situation. As one teacher put it: "You've got to be really flexible. I prefer to go without plan." The task to switch from one child to another and from one program to the next challenges the teachers creativity. One teacher said: "If you do not know what to do with a child then you are at the wrong place anyway." Thus a teacher can get a great deal of satisfaction from the mastery '3~s This means special placement within the regular school system if the child needs special support. Hospital Staff / 110 of these tasks. As an extrinsic reward one must add the notion of being helpful as support for a normal life. The result, however, is not seen immediately - if at all. 6.2.4. Teachers' Position in the Hospitals The teachers are administratively independent from the hospital, because they are employed by the school board. This makes them independent from the organizational hierarchy of the hospital, but it also makes them outsiders. In addition their work is not directly illness related and serves different purposes. Teachers seem to be somewhat peripheral in the medical setting.3 6 This also becomes obvious in daily activities. They have to arrange their schedules constantly around medical procedures. Frequently they are not even informed when treatments take place during school time. Teachers visit the children in their rooms before class starts. They wish them "good morning" and ask them to come to school after they finished breakfast, got dressed, etc. However children are often late for class because school does not have a high priority for the nurses.3 7 When children come late they distract other children for a while until the group has resettled again. Classes are also frequently interrupted by medical staff who take the child to treatment or examination. ~ 3 _ B This has become more apparent during the observations of medical staff. The teachers are probably the staff members who wait politely for the longest time at the nursing station until they get an answer. Most other staff would just interrupt conversations and ask. 3 7 A reminder for the nurses to bring children to school in time (written by a nurse) stated: "School is part of their regular social life (whether they realize it or not)." I interpreted this synonimously with "believe it or not." Hospital Staff / 111 On the other hand teachers are dependent on the information which medical staff have about children.3 8 They also have to rely on the nurse when a child's intravenous pump starts beeping. Then the teacher has to phone the respective ward and ask a nurse to come and check. The frequency of those interruptions varies. One day there may be three children with a combination of five IV-pumps in one class, another day there may be none.3 9 Generally speaking teachers constitute a separate entity in the hospital setting. They are a connection to a "normal" world which seems to some extent subordinate to the medical problems which are relevant in the hospital. 6.2.5. Information The realization of teaching objectives is influenced by the information available to the teacher. They need information about a child's school program, effects of illness and treatment, therapy schedules, and duration of hospitalization. Data about family background also helps to assess the needs of the child. Teachers receive listings of school-age children. They approach the children and have to find out what their individual school programs are. Sometimes the regular teacher has prepared a statement about the program. In most cases, however, the teacher has to phone the school and find out the details. Sometimes the child or the parents can help. The school counsellor is phoned when several teachers are concerned to simplify the information gathering process for the Hospital Teacher. This task can be quite time consuming, especially when several long distance calls have to be made in order to reach the regular ~ 3 ~ B I never observed that teachers looked through a patient's chart. All other staff (except housekeeping) consult the charts frequently. 3 9 Children with cancer get IVs quite often. Hospital Staff / 112 teacher or counsellor. Background information about the child an his/her illness is provided by the "social round" of a ward. Once a week Head Nurse, Teachers, Child Life Workers, Occupational Therapist, Physiotherapist, Dietitian, Social Workers, and Public Health Liaison Nurse meet to exchange information about the children on a ward.a 0 Because teachers have students from different wards they may have to go to several such rounds. During the "social rounds" for the Oncology Ward the Head Nurse usually reads short statements from a Kardex which lists diagnosis, routines, treatment schedules, etc. for every child. Sometimes she makes an additional comment or a question is asked by another person in the round. Usually the information which are passed on are about a child's age, illness, treatment, behaviour observations, and family background. The communication is "problem" oriented. Sometimes the Head Nurse will sa3r "no problems" and then proceed to the next patient. The Head Nurse looks at the Kardex which is lying in front of her, half on the table half on her lap. Head Nurse: Karen had abdominal sutures removed today. Social Worker: Are there any chances of her getting out? Head Nurse: They said they were stopping steroids and they have. They want to see how she goes. We are going to stop the bleeding. Peter ... Teacher: Peter said he would leave today. Head Nurse: Not that I know. Georgia Town is preparing to deal with him. Mom was given the chance of experimental drugs, but didn't take the chance. The composition of these rounds varies from ward to ward, i.e. a physician might be present. The round in Oncology is taken as an example here. Hospital Staff / 113 Social Worker: Mom first suppressed i t " 1 intellectually but now she is giving a lot of support. Head Nurse: She doesn't want to talk about it any more. Social Worker: She has built up her own support system now. Head Nurse (continues to read from the Kardex): Judy is settling in now, bone marrow (transplant?) was not successful. ... Comments can trigger questions and further comments from other staff. It seems that sometimes personal and professional coping are put together. Imitations of a child's behaviour may serve as relief valve for frustrations deriving from the work with a difficult child. Medical and organizational data are combined with the perspectives of the respective staff members. "George sixteen, CCABC * 2 every day and physio arranging schedule, has short term memory loss, is frightened if nurse does not come right away. He said to nurses (Head Nurse imitates high pressed voice): "I don't want to be in pain" or "why me", gets frustrated when he cannot tell things. He does not know what is happening with his body. Social Worker: Mother says it's not her boy. Head Nurse: Mother needs a lot of encouragement. Teacher: How much can he actually see? Occupational Therapist: He is worried about schoolwork, but he can't see, his eyesight is twenty - twenty. Teacher: I am up the creek with him because of behaviour problems and if he cannot see I don't know what I am supposed to do with him. Occupational Therapist: I make him dress himself. When he cried I said: "Why are you crying like a baby?" he says (imitates a weepy dealing with the illness ' 2 Cancer Control Agency of British Columbia where children receive their radiation treatment. Hospital Staff / 114 voice) "I can't help. I know I am not a baby. I am 16 years old." I try to make him independent. Public Health Liaison Nurse: He acts out with his mother. He is whining a lot. Occupational Therapist: He is good when he knows how long it is going to take. He always says that he can't do it first, but when you don't do it he does it. Head Nurse: He has a braintumor. He will get more radiation and more chemo. (Head Nurse pauses briefly and then continues to read from the Kardex) Susan will have a scan today and tomorrow. Brian is fine..." Information is passed on in a mainly anecdotal way and a deeper analysis of individual problems was not observed in this context. Very rarely the opportunity seems to be used to plan an overall program for a child. The round deals with up to twenty-two children within one hour. The time for every child is very limited. Most information in these meeting relate to medical treatment. Although the teacher participates in the interactions quoted above, it has been observed that teachers generally have a more passive role in those rounds as listeners.4 3 The teacher also tries to obtain information from the child. The usefulness of this information depends on the knowledge and the age of the child. The attitudes of children toward school may also vary due to variables of the personality or the feelings caused by illness and treatment which may make the child reluctant to disclose anything. 4 3 The information inthese rounds seem to be on\y marginally helpful for the actual work of the teachers despite this being their main source of background information about the children they teach. Hospital Staff / 115 6.2.6. Teacher and Children The children's reactions toward the teachers seem to have two extremes. Some children are quite eager to do school work as if they want to escape from the medical world of illness. Many children, however, see schoolwork as an additional hassle and have a "leave me alone" attitude. They try to avoid schoolwork as if they want to say "I have enough trouble so I deserve a break".4 4 From the various comments one could distinguish three different categories of reasons for rejection of school: 1. The child does not like school due to prior experiences. 2. The stay in hospital is regarded as a break from all normal activities. 3. The child rejects school work because he/she is afraid or confused by the unfamiliar environment or because he/she feels physically not fit enough. A negative attitude toward school can make a teachers task very difficult because the rejection denies relationship and access to basic information. A first encounter between teacher and future student may look like this: The teacher looks at her list and then proceeds to the oncology ward. She enters a patient's room with two beds through the open door. Then she looks around and proceeds to the bed of Bruce who has two IVs standing near his bed connected to a catheter in his chest. Teacher: Are you Bruce Wilson? Bruce: (nods) Teacher: I am Miss Travis * 5 the school teacher in the hospital. I "4_1i Because this issue was not in the focus of the observations it is difficult to quantify the numbers of children in each group and indicate in how far this behaviour relates to their prior school experience. However, I had the impression that school rejection was stronger with teenagers and generally during the initial period of hospitalization. 4 5 Teachers are usually addressed by their last names whereas children address other hospital staff (except physicians) by their first names. Hospital Staff / 116 would like you to come to school. Bruce: umh. Teacher: Can you tell me a little bit about your program? Bruce: no (looks down most of the time) Nurse comes in, checks IVs and adjusts them. Teacher: Did your teacher give you anything? Bruce: no. Teacher: Do you have any books with you? Bruce: no. Teacher: I will try what I can find out about your program. Can you come to school tomorrow? Bruce: no. Teacher: You know there is a new English word: yes! Nurse: Come on Bruce do what you have been told. Teacher: I will see you in school tomorrow morning. Teacher pats his leg, turns around and proceeds to another patient room which is empty. ... Most children do not exhibit a negative attitude openly during their first interaction with the teacher. * 6 Especially younger children mostly react rather shyly. When parents are there they distract the focus of the interaction away from the child and talk more about their child's school themselves. Nurses frequently take part in the conversations as well when they are in the room. There may also be interruptions because medical treatments or medications are " 4 _ B A child's negative attitude may have a variety of reasons, however, if it is displayed openly it may start a vicious circle of mutual entrenchment which can also involve other staff. Negative attitudes are then likely to persist. Hospital Staff / 117 given. Teachers on the other hand respect the privacy of children. I observed a teacher sliding a note under door into a child's room when the curtains of the windows facing the corridor were closed. Teachers also have to cope with illness or injury related handicaps of children which influence a child's behaviour. Most hospitalized children have special needs.4 7 Sometimes teachers try to defuse the child's negative attitude by addressing it in their own way: The Teacher enters a patient's room. Maud is lying in bed and watches TV. Her right arm is tied to a cast with bandages. Another bed is empty. The teacher greets Maud, switches the TV off, and sits down on the side of her bed. Teacher: "Please be nice to me today." Maud looks at her quietly. Teacher takes a book and a notebook from Maud's bedside table and instructs Maud to do every second calculation. Maud complains sometimes with a whining voice and writes awkwardly with her left hand. Maud (looks at her writing): "This doesn't look right. I am not used to write with my left hand." Teacher: "Do you know when you'll be home?" Maud: "If it's not soon I'll beat the brain out of them." Nurse (enters room with a little plastic cup with pills in her hand): "What do you wanna take this with?" Maud: "Water." Teacher: "Please." Maud: "Pleeease." Nurse (leaves room briefly and returns with a cup of water): "Here you go Maud." " The majority of the teachers did not have training in Special Education and they have to rely on their experience. Hospital Staff / 118 Maud hesitates. Nurse: "I am a little bit short today. It's not you, it,s because I got stuff to do, you know that." The nurse leaves the room. Maud swallows pills and then continues her schoolwork while the teacher watches and helps. * 8 The teacher tried to gain control from the beginning when she came into the room and interrupted the TV session without comment. The girl displayed some anger against the hospital staff. However, the staff - including teacher - were task oriented and left little space for a child to vent emotions. Teachers tried to absorb many different reactions of children with the explanation of the specific situation. One teacher said to a girl which was obviously reluctant to do schoolwork and made several rude remarks: "Because you are in hospital I am trying to absorb it, because you are not feeling that well. But in a classroom the teacher would send you out." This statement also depicts the special attitudes teachers strive to adopt within the hospital setting. Most interactions between teacher and child are school related. However, other topics are mentioned during the interactions as well, i.e. illness related issues, visits of relatives, etc. This happens especially during bedside teaching. Illness related issues are mostly addressed from a lay-perspective which involves non-medical levels as well. A Teacher may ask a child "When will you be home?" or "Why are you here?" which is rarely done by other staff members because most of them already "know". The teacher visits Ellen in her room, introduces herself "I am the school teacher in the hospital", explains that she wants to take her to 4 8 I n this case the nurse eased the tension by explaining the background of her behaviour. This made it possible for Maud to take the pills without a fight. The explanation served as an apology. Hospital Staff / 119 the classroom, and pushes her in a wheelchair into the classroom. Teacher: "Why are you here?" Ellen: "Because of my leg." Teacher: "What's wrong with it, does it hurt?" Ellen: "Yes it hurts." (Ellen looks down at her books) Teacher: "Who is your doctor?" Ellen: (Pause) "I can't remember." Teacher: (Pause) "We'll start with reading." The teacher puts the open book in front of her and Ellen begins to read. The information for the teacher is scarce, but there are opportunities for more talk about illness related issues. Teacher and child may talk about feelings of pain and other issues of being sick when they arise, however task orientation toward schoolwork limits those possibilities. Sometimes issues are addressed indirectly by teachers in conversation with others while the child is listening. Once a child overheard a conversation between her teacher and her mother about the various cells found in her blood. After a while the girl said: "Don't mention cells in the blood. Girls with five don't understand this." A self-protective attitude became apparent when she did not want to listen to the communication about her illness. During the interactions teachers react slightly different compared to the other persons within the setting. They ask more questions and guide the child to find his/her own answers to problems rather than telling the solution right away. On the way back to the ward a teacher will say "Which way do you think we should go?" instead of "Go this way." On the other hand teachers do not use much of a "hospital language" with many special words and acronyms. Hospital Staff / 120 6.2.7. Children's Attitudes Children do not seem to. give school much importance while thej' are in hospital. The younger they are the more normalization seems to be connected with home and parents rather than with school. It takes a while until they can grasp that schoolwork can distract them a little bit from the hospital routine or support them with their lives. Most children seem to reject the hypothesis that schoolwork in the hospital will actually help them when they return to regular school. Children rarely talk about school amongst themselves. School may come up when a child has made something visible at school (i.e. a painting): "Did you make that at school?", or in the form of a negative comment during a conversation: Boy 1: "Do you like school?" Boy 2 shakes his head. Boy 1: "I hate school!" Very rarely children talk about something that happened at school. Adults seem to find school a much more interesting topic for conversations than children do. Visitors or staff frequently ask "How was school?" The usual responses are something like a neutral "um" or "fine." 6.2.8. The Teachers' Perspective Several things make it difficult for Hospital Teachers to pursue their objectives. Teachers are in between many different relationships within the hospital setting. As a head of a hospital school program notes (Lee, 1975: 23): Hospital Staff / 121 "Teachers in hospitals frequentlj' walk a tightrope in their relations with the medical, nursing, domestic and paramedical groups, as well as with patients and parents. The school is a separate entity within the hospital setting. The teachers are not part of the therapeutic decision-making processes concerning hospitalized children. The}7 have to organize their programs around all other events which makes planning very difficult if not impossible. The classes are frequently disturbed. Children are often taken away during schooltime or arrive late. There are also other interruptions like IVs are beeping, nurses have to be called, etc. In between the teachers have to organize the program and do occasional phone calls. Although classes in the hospital are smaller than in the regular school (between 4 to 8 children), there are many interferences with the continuity of instruction. It is difficult and time consuming for a teacher to obtain enough information in order to be able to plan an individualized school program. There are also many different subjects to teach according to a variety of programs, which creates complicated variables for successful teaching. All this opens a gap between the teaching aims and actual schooling achievements. This gap can be increased by the attitudes and moods of children due to the effects of illness/injury and hospitalization. In addition one has to take into account that there is a rapid turnover of children which requires that teachers adapt their programs to the special needs of children they sometimes hardly get to know. Normalization which is in the focus of Hospital Teachers' activities seems to have a number of different interpretations within the hospital setting. The teachers highlight the social, school related activities of a child. The child should Hospital Staff / 122 continue with normal daily life despite extraordinary circumstances. It is a widespread view that a ' school program in a hospital represents a link to the normal world (Kirten/Liverman, 1977: 170): "A part of the real world becomes a part of the daily hospital-life program. This gives the child hope for recovery and eventual return to the outside world." However this has to be matched with the perspective of the child who initially tends to see school more as an additional burden. Immediate feelings due to illness or treatment as well as the duration of hospitalization influence a child's attitude. The briefer the stay in the hospital, the less distant is the outside world, however the shock of hospitalization is likely to be more acute. The longer the child is hospitalized the more adapted he/she becomes to the new environment and the more the outside world fades into a distance. On the other hand children need time to adapt themselves to the new environment and it is very understandable that they are at first reluctant to go to school while they are in hospital. The benefit of a hospital school program for children is subtle. Everything is imposed by adults who are doing what they think is in the child's best interest. Younger school-age children do not see the contribution of a hospital school program to their normal life. It does not help them to get out of hospital any sooner. It must be the role of the adults to offer a bridge. Hospital Teachers can indeed offer a chance in terms of distraction from hospital activities, compensatory learning (keeping up with school), and social remedies (smooth transition back into regular life). However they have to succeed in enabling the child to grab these opportunities. Hospital Staff / 123 At the moment children in hospital rather seem to be put into a solitary togetherness which Lee (1975: 27) describes: "He sits alone on a bed with spaces on both sides in a middle of a company he did not choose and cannot change." The teaching objectives seem to be put beyond reach. Teachers' ambitions and sincere efforts to help the sick child are hampered by implicit organizational problems and sometimes by the children themselves, when they do not seem to fit into the challenges of their new environment. 6.2.9. Observing the Teachers The teachers in the hospital were the first group in the observation cycle. They were to some extent my introduction to the setting as well as they were trainers for my conduct as participant observer. The teachers were directly observed for two weeks. Additional notes were taken during some observations of children. At first teachers expressed on the one hand interest in my study, and on the other hand concern about interference with their work and how my presence would work out. One teacher said that she was concerned that I would be following her constantly because she already had enough to do. She considered addressing the school board to legitimize my presence. One teacher retrospectively expressed anger that I had shared a lunchbreak with her. She said that she had to go to the washroom in order to escape and have some privacy. In this instance my presence was considered to be a threat. It is interesting to note that I could not perceive any clues for an Hospital Staff / 124 apparent buildup of emotions. On the surface there had always been friendliness and interest for my research. But my presence must have been perceived as a threat. Retrospectively I can interpret several remarks in a different way. When I came back into the classroom during the last phase of observations of children some time later, teachers responded "Oh I didn't know we would see you again" (to do observations) and asked after some days "How long will you be here?" (in the classroom). Now I was alerted and interpreted this as a possible warning that my presence became a burden. I addressed the issue of my presence in conversations with the teachers. After several interactions one teacher said that she had actually found my presence difficult "because it was the first week and I wasn't organized yet." This had not been communicated to me before."9 This seems to be supported by comments of teachers which indicated that they tried not to show their emotions, problems with organization, etc. to the children, because it may influence them negatively. They rather wanted to present themselves with a friendly attitude in order to facilitate progress in school. After a while teachers included me as an assistant in their work. When I was asked to do something I usually mentioned that I was really only an observer, but I did not refuse to participate. Although participation was clearly not my objective I wanted to find a natural approach to the setting and make my presence as unthreatening as possible. Taking part in activities seemed to give me a proper role. Maybe my background in education was also a contributing factor which seemed to make an Another possible interpretation might be to look at the school as a system, which has its own rules and behaviour patterns. Problems are kept under the surface up to a certain level. When they exceed this level of tolerance they may be solved in referring to a higher level in the hierarchy, i.e. the principal or school board which then would have to find a solution. Hospital Staff / 125 involvement appropriate. However, a resulting difficulty for me was that my notetaking had to be postponed until the activity was over. Generally I was able to develop a relationship with the teachers which made it possible to share jokes and chat if there was an opportunity, as well as to do my observations. Hospital Staff / 126 6.3. NURSES This section focuses on the registered or general duty nurses because they have most interactions with the children. The different outlooks of other nursing staff are mentioned in individual subchapters after their respective duties have been laid out. The nurses represent the group of health professionals who implement the greatest part of the treatment and care to the children. They are considered to be, as one nurse put it, "the heart of the hospital." 6.3.1. The Nurses' Setting The nurses in the hospital as a group consist of a number of subgroups. Directly involved on the ward are: 1. Head Nurse, who organizes nursing activities on the ward. The definition of this position in the job description states: "A Head Nurse is a registered nurse with required academic preparation and related experience engaged primarily in the management of patient care in a nursing unit. The Head Nurse works in close co-operation with the Nurse Clinicians and cooperates with other members of the patient care team in coordinating patients' total needs." The Head Nurse is responsible for the nursing care and the nursing delivery system on her unit and usually works from 7:00 a.m. to 3:00 p.m. 2. Nurse Clinicians serve in two different areas. Two Nurse Clinicians were mainly involved in teaching parents, children and staff about special procedures, i.e. catheters, and about the respective treatment protocols. Two other Nurse Clinicians who shared one full time position were responsible Hospital Staff / 127 for chemotherapy and generalty called "Chemo Nurse." The definition of this position in the job description states: "A Nurse Clinician is a Registered Nurse skilled in paediatric nursing with a strong interest in, and an expertise in, the care of paediatric patients in a subspecialty. Her/his overall commitments are to clinical practice, advancing nursing knowledge and assisting others in developing high level performance. The Nurse Clinician works in close co-operation with the Head Nurses." Nurse Clinicians usually work from 8:30 a.m. to 4:30 p.m. Nurse Clinicians were gradually replaced by Clinical Nurse Specialists, who had a higher academic degree but otherwise the same mandate. 3. Registered Nurses constitute the largest group of nurses on the ward (25 full-time, 4 part-time). They are graduates of a school of nursing and are registered with the nurses association. They implement most of the medical care which is prescribed by the physicians. In the job description they are referred to as "General Duty Nurse" who: assesses needs of individual patients or small groups of patients, implements plan of care for individual patients or small groups of patients, utilizes appropriate techniques in the care of selected patients and small groups of patients, documents nursing care on patient record, evaluates the care of individual patients and/or small groups of patients, initiates appropriate referrals. Registered nurses have to take part in teaching, i.e. model good health and hygiene, and in evaluating patient care. In addition they have to assume "responsibility for development and maintenance of her/his professional Hospital Staff / 128 competency."50 One of the senior Registered Nurses acts as a Charge Nurse during a shift. She checks and organizes assignments for the day (i.e. who is responsible for a patient's care, who gives medications for the children cared for by Licensed Practical Nurses), assigns first and second breaks,5 1 organizes daily routines and paperwork, and checks staffing for the next day. She stays mainly at the nursing station. Registered Nurses work in 12 hour shifts from 7:00 a.m. to 7:00 p.m. and vice versa during the night. 4. Licensed Practical Nurses are mainly assigned to housekeeping tasks. They do not give any injections but they assist when injections are given, i.e. by holding the child. The purpose and scope of their work is defined in the job description: "The employee works under the supervision of a registered nurse. He/she shares in assessing the physical and psychosocial needs of, and in planning, implementing, evaluating and documenting the nursing care -for, an individual patient or group of patients." Initially three Licensed Practical Nurses worked eight hours from 7:00 a.m. to 3:00 p.m. and from 3:00 p.m. to 12:00 a.m. until their shifts were adapted to the twelve hour shifts of the Registered Nurses. 5. A Unit Clerk receives most of the telephone calls at the nursing station and does a considerable amount of paper work, i.e. preparing charts, filing bloodcounts, checking orders, etc. The purpose and scope of this work is "5~° Quote from job description. 5 1 A nursing shift is divided into two coffee, lunch, dinner breaks to assure that there is always someone on the ward. This forms subgroups who will sit together and chat for the day. The breaks are important for social contact among nurses and one may check with another: "Are you on first?" defined in the job description: Hospital Staff / 129 "The employee works under the supervision of the nurse in charge and acts as a clerical assistant to duty nurses. The employee is responsible for reception duties, maintenance of supplies, charts and files." There are three Unit Clerks. One person usually works from 7:00 a.m. to 3:00 p.m. and another one continues until 7:00 p.m. and there is also a weekend shift. 6. One Porter/Aide transfers patients, specimens, and necessary papers between the different departments of the hospital. Nursing Aides work eight hours from 8:00 a.m. until 4:00 p.m. 7. The Community Health Liaison Nurse is consulted when home care is necessary for a child. Children with Cancer frequently have special care needs due to their low blood counts (danger of infections), if they are not able to walk or move around easily, or if they have a catheter. 5 2 8. Additionally there are sometimes 3-5 Student Nurses from three different schools of nursing on the ward. This listing is done according to the hospital hierarchy. For children the hierarchy is presented in a totally different manner. They will hardly have contact with the head nurse and the registered and practical nurses are much more important for him/her because they spend more time with him/her. Most children will not make a distinction between practical and registered nurses because they perform similar tasks, however they are very aware of the ™ M a n y children get a"Hickman Line." This is a catheter which enters the body at the chest and a blood vessel at the neck. Blood can be drawn and injections given without a, poke. However, catheters require special care in order to avoid infections. Hospital Staff / 130 difference between Nurse Clinicians and "Chemo Nurse" although their nametags indicate the same profession. Smaller children sometimes started to cry when the "Chemo Nurse" looked at them because she was automatically connected with painful injections. Many organizational and personal changes occurred during the observations of this study. The nursing administration put an increasingly stronger emphasis on academic training of nursing staff. Nurse Clinicians were partially replaced by "Clinical Nurse Specialists" who held a Masters degree. After the conclusions of the observations the positions of Licensed Practical Nurses were deleted and partially replaced by Registered Nurses. In addition there was a considerable turnover in the nursing staff on the ward. All nursing staff on the ward were female, with the exception of one Porter/Aide, who worked there for a limited time. 6.3.2. Nursing Aims The hospital's department of nursing formulated in a statement of philosophy several aims: 1. To provide skilled nursing care to children and their families. 2. To foster an environment for children and families in hospital which assures their rights as individuals and provides the daily living activities necessary for growth and development. 3. To identify, plan, implement and evaluate with the cooperation of other disciplines, educational programs which meet the health needs of children and families. 4. To identify, plan, implement and evaluate nursing research projects and to cooperate with the research of other disciplines involved in the care of children. 5. To provide an environment for nurses which encourages individual Hospital Staff / 131 and professional growth. The provisions for growth of the individual child, parent, and nurse is emphasized in a cooperative framework with other professions. This is paired with "skilled nursing care' which has been defined by the hospital administration as follows: Skilled Nursing Care: (continuous process) Assessment of patient/parent needs. Planning of action. Implementation of nursing intervention to effect a change in the needs. Evaluation of results of care. It becomes obvious that nursing care is action oriented. For example listening skills, which are of paramount importance for assessment in a social setting, are not mentioned. The provisions for growth are also emphasized in textbooks on pediatric nursing (Leifer, 1982: XIII): "The goal of pediatric nursing is to foster the growth and development of children and promote an optimum state of health - physically, mentally, and socially - so that they may function at their peak capacity." The "optimum state of health" is closely linked with the physical condition of the patient in a hospital setting. In fact it seems that there is a hierarchy between physical and other needs. If physical needs are met then there is space for social and mental needs. Examples will show that communications may become increasingly task oriented and thus reflect the needs of the medical perspective Hospital Staff / 132 rather than the needs of the child. It is interesting to note that emotional needs are somehow buried in those definitions. Daily routines of giving medications and providing care may challenge nursing aims. Although nurses rarely talked about their aims, it was evident from their comments that there were some areas of conflict (5-19): Nurse: "Sometimes when it comes to the end and they are using these test drugs, then I ask myself, what are you doing?" The dissatisfaction with the effects of their work centered sometimes on the medication (4-65): Nurse: "...a horrible medicine, I don't know why they give it." When medication did not seem to work and had severe side effects, it was considered bad because there were no good results. From these and other interactions it became evident that the accepted nursing goals did not always match the reality on the ward where sometimes medication did not work or had severe side effects. The huge nursing staff turnover is also an indication for conflicts. The literature on Burnout (Kramer, 1974; Yasko, 1983) describes the widening gap between goals and actual achievements which leads to frustration with the job. As a counterpoint nurse seem to develop their own attitudinal goals. In their attitude they must make things work: Nurse: "You have to look at the good things, that it will help. If you are always looking at the negative things, then you are in the wrong job." However this positive attitude is frequently in danger of being overturned by Hospital Staff / 133 adverse realities. In some cases all efforts fail and the hopes for success dwindle. (6-20) Nurse: "It makes me feel sad when you have been through so much and then you have to look at an end." It seems that when the activities lose their meaning in terms of medical success, some more space for empathy is available. There are many conflicts in the day to day nursing activities, especially when those involve painful procedures. Nurses may be confronted with their own attachment to children. This may make it increasingly painful for them to see children suffer. (P-13) Nurse (complains to me just before an LP is begun): "Why do I have to go? He is my favorite boy and I wanna be with him except when he goes in there. Do you wanna hold him and I take notes?" This reflects nurses' emotional involvement and shows that they are quite aware of their pain inflicting role. The relationships seem to play an important role with respect to the rewards nurses get from their work. Nurses' Rewards There seem to be two main areas of rewards for nurses' work. One is achieving nursing goals the other is the relationship between nurses and patients or parents. One nurse said when asked for the rewards of her work: Hospital Staff / 134 (6-16) "You have a supergood relationship with the parents and the kids. When the kid comes here bleeding all over and they get their IV, bloodtransfusion, etc. and it stops, they feel like life is given back to them. Or look at Martin, he had Aplastic Anemia a really nasty disease and now he is running around again. You don't know for how long, but anyway, this is really neat. And the staff is really neat. You probably noticed that we do a lot of bitching but they are really neat, every single one of them." It can be assumed that "supergood relationship" refers to the emotional involvement and to the depth of issues. However, relationships are somewhat ambiguous in this setting as we shall see later. Success of the treatment is also an important reward. To see a positive outcome is a reinforcement of the work, although there is always uncertainty and unsuccessful cases challenge achievements and pose a threat to treatment strategies. Nurses are usually delighted when a child, who was in remission came to visit. It did not really matter if the child had been difficult during his/her hospitalization. It was important to see that a child was doing well as a sign that the treatment really worked. 6.3.3. Information Nurses have to cope with a considerable amount of information. General information about treatments and hospital routines has to be updated constantly. The personal and medical background of every patient has to be taken into account. The actual condition of a patient is a dynamic process which is made more complex by changes in the treatment plan. Information about those things is vital for the work of nurses and it requires continuous updating. Hospital Staff / 135 Information was passed on through several levels of communication channels which were maintained on the ward: 1. Formal level (the official channel of information): a. Patient charts contain information about diagnosis, treatment, doctor's orders, consent forms, family background, etc. They are the primary source of information for all hospital staff. b. Kardex a cardfolder which contains individual information about diagnosis, daily treatments, medications, etc. c. Morning or evening rounds take place at the end of a shift when the incoming nurses listen to a taperecording about nursing routines with every child, which the outgoing shift has prepared. Charge Nurse and Chemo Nurse take part in the morning rounds with physicians where medical treatment plans for all patients on the ward are discussed. d. Oncology rounds take place once a week lasting one to one and a half hours where physicians (Hematologists, Radiologist, Oncology Fellow, Residents), Social Workers, Dietitian, Nurse Clinicians, and the Charge and/or Head Nurse discuss medical treatment plans. e. Social rounds take place once a week and Charge or Head Nurse, one nurse clinician, Physio and Occupational Therapists, Hospital teachers, Dietitian, and Child Life Worker discuss children's individual psychosocial behaviour and treatment; a short record from these meetings is kept in a book at the nursing desk. 2. Semiformal level (channel for internal information exchange between the nurses): a. Communication Book nurses write down notes for other nurses about events on the ward (i.e. when a child died), when something has gone wrong, complaints, etc. Sometimes Social Workers also write notes into this book (i.e. about a home visit to parents). The book is kept at the nursing desk. Hospital Staff / 136 b. "Peter's" rounds5 3 take place once or twice per week when a member of the psychology department conducts a meeting for nurses on the ward who talk about their coping with difficult situations or just chat about recent events. c. Newsletter During the last phase of the observations a newsletter for nurses was produced by nurses on the ward, which contained humorous comments about activities on the ward, gossip, and some personal information about nurses (i.e. birthdays). 3. Informal level (information channels which were not formally organized): a. Conversations at the nursing desk A lot of information was passed on casually at the nursing desk, which is the central point for nurses in the ward. Usually the chats are often short comments about incidents or observations (i.e. "Dorothy is shaking when she gets her medication"), or questions (i.e. "Does anyone know where the scales are?"), Many things are said in passing, but everyone seems to listen. 5 " . b. Conversations in medication room or office If something is not meant for everyone (all nurses) it will be talked about in the nursing office (i.e. comments about physicians or patients). The Medication Room is a very small room adjacent to the nursing station. Medications and syringes are prepared by the nurse here. Only two nurses are able to work there simultaneously due to the size of the room. The physical closeness seems to trigger an exchange of information about incidents. c. Conversations at coffee, lunch, or dinner breaks Breaks are important events during the day of a nurse. Conversations, which usually take place in a cafeteria, deal mainly with personal things. However recent events on the ward and background information about some parents and children are usually dealt with * 3 This round is named after the psychologist who usually conducts them. (The name has been changed) 5 0 I observed that sometimes a nurse would comment on a conversation from the nursing office although she did not take part in the interaction at the desk. Hospital Staff / 137 during the first part of the break.5 5 These levels of information are mainly addressing communication among nurses. Other staff becomes involved via the patient's chart and in the Oncology or Social Rounds on a formal level. Informal exchanges between nurses and other staff occur mainly at the nursing station, however, they mainly deal with organizational questions, e.g. when a child gets treatment, where is he/she?, etc. Answers to a question like "how is she doing?" are answered according to the status of the other person. The openness increases with the proximity of the professional group and decreases the more a person seems to be removed from the medical staff. Information about patients is passed on according to its medical importance through the various levels of information and to other staff. It would exceed the scope of this chapter to give examples for all levels of information. However, if one follows the information gathering process on an informal level, attitudes and evaluative processes become more transparent. (5-17ff.) Paul, a ten year old boy is lying on a table with his head in a big machine, the CT-Scan. His eyes are closed. Generally he seems disoriented and spaced out. In an adjacent room a physician and nurse 1 look at a monitor. The physicians explains some features of the brain which are visible on the different images. Physician: "There is an abscess here (points at the monitor). It could be some fresh bleeding." Nurse 1: "Is it large?" Physician: "No" (measures size on the monitor). " It seems that nurses first have to clear their minds from work before they can interact on a more personal level. Hospital Staff / 138 After the procedure is finished Paul is transferred to a stretcher and brought back to his room. On the way they meet the two residents from the ward. Nurse 1 tells them with a low voice in passing: "They found an abscess in his brain." On the ward they meet the Oncology Fellow and nurse 1 tells her the same message. After Paul has been transferred into his bed another nurse looks briefly into the room. Nurse 1 (whispers to her): "He's got an abscess in his brain." Nurse 2 frowns and leaves the room. After the lunchbreak nurse 1 meets Paul's mother in his room. Mother: "What did they do the scan for?" Nurse 1 (thinks for a moment): "I don't know" (pauses) "Maybe you ask Dr. Lee." At first hospital insiders, medical staff, are informed. Although the information is considered important which is demdnstrated by the fact that every opportunity is used to pass it on to the medical staff, parents and patient are excluded. This shows that not only children, but also parents may be protected from some information. However, if the child is alert he/she may can pick up the information on several occasions. The rationale for this approach is to provide a somewhat controlled environment where parents and children get their information from one source and that ideally they would not have to cope with fragments of frightening news. However, the environment is contaminated with all sorts of information and physicians, who are hierarchically responsible in this case, may not be available at the appropriate moment, which may leave parents and children in an emotionally tense state confronted with a high degree of uncertainty. Hospital Staff / 139 Frequently information about patients arrives in bits and pieces. This can be illustrated with a new admission of a patient during the night shift. 5 6 The following quotes show how fragments of information are put together and how the situation is evaluated. The example focuses on the interactions about the new admission, a girl who has previously spent considerable time on the ward, and leaves out some of the unrelated activities in between. (6-42ff) 22:15 Nurse 1 finishes a telephone conversation at the nursing desk and goes to nurse 2 who is preparing syringes in the medication room. Nurse 1: "Theresa Dalton is coming tonight. Her platelets are down and she has been bleeding a bit." 22:25 The Medical Student Intern (MSI) arrives at the nursing station. MSI: "Did you hear that Theresa is coming?" Nurse 2: "Yes, she might." MSI: "I guess she is coming for sure." Nurse 2 (walks around and tells the other nurses): "She is coming for sure." Another telephone call is received at a desk that another baby patient is coming. Nurse 2 is busy at the nursing desk. Nurse 1 (talks while preparing something in the medication room): "So she is bleeding." Nurse 1: "I think it has been almost a month." (pause, turns to nurse 3 who only recently came to work on the ward) "It's an improvement because normally she got blood transfusions twice a The night shift permits a m o r e controlled environment, which means that there are less things happening with fewer persons involved than during the day. One has the feeling that one is on top of the events on the ward. Hospital Staff / 140 week." 23:35 Nurse 1 (after she finished a telephone conversation): "She sounds like she is fairly sick. She is bleeding and has a temperature of 40.5." 5 7 Two MSIs come to the desk, look at a list which nurse 1 has prepared and get some things from the medication room. Nurse 1 is telephoning again. Nurse 1: "It sounds like she is bleeding quite badly." Nurse 2 prepares a room, gets alcohol, gauze, etc. She comments: "I wanna get halfway organized before she comes." She phones for Theresa's old chart. 1:55 Nurse 1 answers a telephone call at the nursing desk. Nurse 1 (after she finished the telephone conversation): "Theresa is still in River City. Her BP is 64 over zip and they are just ambulance guys. They don't know how to start an IV." Nurse 2: "But she has a Hickman Line and we could tell them how to do it." They continue with their activities. Nurse 2 checks a beeping IVAC. Then she returns to the nursing station. Nurse 2: "It's irresponsible of the parents to leave it to the last minute." Nurse 1: "Maybe it's the hospital in River City because she has been there this morning." 3:20 Telephone call at the nursing desk. Nurse 1: "The ambulance will be here in 15 minutes. She is in quite a bit of pain." The two nurses collect some medication and walk downstairs to emergency. This announcement came without reference as to whom she was talking to, but everyone seemed to know. Hospital Staff / 141 Only fragments of information are passed on. However everyone seems to be aware of the situation and knows how to fit in the pieces although no proper references are made to the actual case. In addition the information trigger a series of activities (i.e. preparing a room, getting materials, etc.). Quick judgements are made on the information available. This is a necessity for the work within this setting, however it may also lead to false assumptions. The information which nurses get has a direct impact on their work and their perspective, their point of view is also influenced by their position within the setting. 6.3.4. Nurses' Position in the Hospital Nurses on a ward regard themselves as one group. They make a distinction between nurses and other staff, and between the staff on a ward and staff outside of the ward. Medical staff on one ward, i.e. nurses and physicians, become one group with respect to outsiders. This becomes apparent in the verbal communications. When nurses talk of "we", they mostly refer to all nurses on the ward. Accordingly "they" is used as a reference to other groups, i.e. physicians, nurses on other wards, parents. However, when nurses talk to parents or visitors "we" may include other staff on the ward as well, e.g. physicians. The ward becomes the smallest group unit in this case. This may also signal a united front which is presented to parents. A "we" may enable staff members to hide behind the agenda of the staff as a whole and defer individual responsibility. The distinctions have two aspect. On the one hand they are inclusive as they define the membership in one group. On the other hand they also have an Hospital Staff / 142 IMAGE 3 Professional Attitudes Paul i s l y i n g on a table i n a s t e r i l e looking room i n the Nuclear Medicine department to get some x-ray photographs done. The nurse i s waiting i n an adjacent room. Technician (comes to nurse): "Paul just pooped on the ta b l e . " The nurse goes to Paul and cleans everything. Technician (while watching): " I t ' s l o v e l y to be a nurse." The nurse nods. Hospital Staff / 143 exclusive aspect when others are denied access to certain information because they are regarded as outsiders. This happens to other staff when they are excluded from informal levels of communication at the nursing station and to parents when they do not get direct answers to their questions. 5 8 The distinctions between the different group levels may also lead to confusion in interactions between nurses and parents. Parents may not be aware of the reference of a "we" or "they" and may interpret this as inclusive whereas they are really excluded. For example a nurse may talk about treatment plans and procedures in a "we" format (meaning nurses and physicians) while parents interpret this as an if they would be directly included (parents and nurses together). When the actual procedure happens parents may Find themselves waiting outside. The nurses on the Oncology ward seemed to have a special position among their peers in the hospital. This was probably closely related to their work, which is quite demanding. There was mostly a fairly high level of activities. Nurses disliked low activity levels, e.g. a nurse commented (6-14) "When it is so slow, I think I got the wrong job. I should not be paid for this." With a high level of activity short chats and teasing increased, which sometimes spilled over into the communications with patients. However, this atmosphere was different from other wards and probably increased the group feeling among Oncology nurses. Although the nurses are the professional group responsible for the actual delivery of the treatment they are hierarchically dependent on the physicians who give the orders. Nurses may know more about the practical effects of the drugs " 5 _ B See also the example in Image 7: "Telling Mother". Hospital Staff / 144 because they give them to the children and observe them afterwards, however the planning is left to the pirysicians. They have to implement the orders given by the physicians. On the other hand the nursing administration seemed to have some clout within the hospital. Many changes were initiated and some also raised concern among the nurses on the wards, e.g. the move to more academic requirements for nurses. They are the largest professional group in the setting. Nurses may use the administrative power to challenge physicians' medical authority. Some nurses stressed that being in the middle of the hierarchy makes good relations important, e.g. (5-35) "You know what it feels like to be treated badly by the ones above you." The hierarchy may be used as a pretense in order to defer responsibility. This happens with respect to the prescription of drugs and also in the interactions with parents. A nurse may not tell everything she knows, even though she is asked, because informing parents or children is considered to be the physician's responsibility. 5 9 In one instance a mother came to visit unaware that her daughter had just died. She found the room empty and inquired anxiously at the nursing station. The nurses searched frantically to find the physician in charge of the patient. When the mother finally broke down crying a nurse told her and went with her to the quiet room. This example shows how the hierarchy is used to refrain from personal engagement in difficult situations. The hierarchy may inhibit communication between nurses and parents or children in two ways. Nurses may not dare to pass on information, because it is beyond their responsibility. On the other hand this may also be used as a protection " 5~ 5See also the example above in which information about the abscess in the brain is being passed on to medical staff and to parents. against personal involvement and anxiety.6 0 Hospital Staff / 1.45 6.3.5. Nurses and Parents The main aspect of nurse parent interaction is information. Nurses, especially nurse clinicians, provide parents with probably most information about illness and treatment. Nurse clinicians spent some time with parents and explain treatment protocols and procedures. They are in a way the liaison persons between the parents and the medical world.6 1 However, all nurses add to the medical information level of the parents who frequently ask questions. These questions help the parents to digest little pieces of information rather than being overwhelmed with everything at once. Nurses may clarify wrong concepts of the illness in such interactions, e.g. (5-32) one mother thought that Leukemia was contagious and she was concerned about what she would bring home to other people. Nurses regard parents sometimes as inhibitors of their work. One aspect comes from the physical environment when nurses feel limited in their movements, e.g. (6-26) a nurse said about visiting parents "I hope they will not be here the whole day. The room is just so small." On the other hand nurses may also feel inhibited in their personal relationship with the child when they feel that they are being observed by parents. It also seemed that they spent less time with those children. When parents are present communication was more between adults and about the children rather than with the children. Isabel Menzies (1970) describes how the organization of a hospital is used as a defense against anxiety. 6 1 See also the chapter "6.7. Social Workers" in which the partially overlapping aims of social workers and nurse clinicians are compared which nevertheless show different approaches. Hospital Staff / 146 Parent behaviour is frequently analyzed and judged. This happens during rounds or other conversations, e.g. (7-15) "mother takes diagnosis very well". In some cases the educational agenda of nurses becomes apparent, e.g. (4-44) during a morning round nurses expressed concern that a mother let her child watch TV until 10 p.m. and another nurse reported that she would do that at home as well because otherwise the child would be crying. Nurses also exchange information about parents in their chats or during their breaks. This mostly involves information about particular incidences or behaviour. It seems that nurses look at parents more in an evaluative mode and examine how they fit into behavioural expectations. This means that the understanding of parents' actions is also limited by those expectations. This also seems to have an effect on nurses' attitudes towards children. 6.3.6. Nurses and Children Two main modes of interactions between nurses and children could be observed. The main mode is the goal oriented interaction which culminates during a treatment (i.e. injections, lumbar punctures, bone marrow aspirations, etc.). In addition nurses try to establish a more casual and private mode of interaction. Some examples can display those different interactional modes. Treatments No universal procedure for the preparation of a child for a treatment is being used. Sometimes preparation does not take place at all or it happens at the last moment. In addition little might actually be communicated to the child about the procedure. An early morning interaction can look like this (5-10): Hospital Staff./ 147 7:35 The nurse looks into the Kardex and into a chart at the nursing station. Then she enters Paul's (8 years old) single bedroom. He is lying in his bed eating crackers. Nurse: "Good Morning Paul!" (proceeds to his bed) "Are you feeling sleepy?" Paul (looks at her): "No." Nurse: "Do you know that you have a bone marrow today?" Paul: "No." Nurse: "That's what we gave you the medicine for, to make you sleepy." She waits a moment and then proceeds to the medication room. The information about the treatment is passed on in a very casual manner. The child is confronted with the imminent treatment which has in fact actually begun with the injection. No further attempt is made to facilitate personal coping processes. The child seems to be a part of a process which takes part regardless of personal needs. However, in some cases information about impending treatments is disregarded completely and the child perceives that something is about to happen from his/her interpretation of the circumstances. Nurses have several strategies to convince children that something has to be done. The initial step is usually a "let's do this" attitude. This may also be done as an instruction, e.g. (6-37) "No nightmares today, ok?" A second step is bargaining. A nurse promises something if the treatment can take place first, e.g. (5-25) "First I'll put the IV on, then you phone your mom." Those deals may put something off, that a child wanted, or they may promise something when the procedure is finished, e.g. a toy from the treasure box. Hospital Staff / 148 Direct orders are given if these strategies fail or if nurses are under pressure to complete' something. The child may then also be physically restrained. For example during treatments the immediate goal to finish the actual procedure may suppress other considerations of the personal needs of the child. 6 2 As a consequence interactions become verbal or physical power struggles. (5-17) Several nurses are talking about the difficulties they had with one teenage boy during treatments. Nurse 1: "You can't force him. He is too big." Nurse 2: "You can force little children though. You can't argue with them anyway." Psychologist: "But the thing is you can cause phobia. You can make a big thing out of it." This example stresses again that technical aspects tend to dominate individual needs. Within the machinery of the hospital there is little open space for individual coping processes. Casual Interactions Many interactions were kept somewhat humorous. The humor consisted of a mixture of jokes about the situation and teasing. Teasing and humor can be interpreted as an effort to establish communicative links despite of the conflicts in the mutual relationship. It also reflects some coping strategies. If a child is difficult there may be an adult collusion in which the adults make jokes about the child in order to cope with the situation. This may include remarks about the child, which show how difficult he/she is. For example a Examples of treatment interactions involving children can be found in the subchapter "8.6. Procedures", e.g. getting an IV or Lumbar Puncture. Hospital Staff / 149 nurse guided one boy to the classroom remarking laughingly: "I have to bring this terrible kid to school." The longer children stay in the hospital the more they adapt to this manner of communication which also alters their behaviour toward nurses. One nurse observed those changes in a child and commented (6-59): "You should have seen her when she came in. She was a cute girl and didn't answer back. We taught her into that." Nurses try to get positive feedback or attention from a child, e.g. "give me a smile", or "give me a hug", and they are disappointed when the child does not react accordingly. (4-65) The nurse walks through the hall and stops at the window of a single room. Monika (a little girl) is sitting in her crib looking towards her. Nurse (smiles through the window): "Hello Monika!" Monika turns her head away. Nurse: "Not a good start for a day." (walks away) The efforts of nurses to get positive attention from the child have been observed frequently. It is probably meant to soften the role as the "bad guy" who gives painful injections etc. as well. Nurses want to have a good relationship with the children, however they also see that the procedures interfere with this relationship. For example a nurse reacted surprised when a boy gave her a valentine and said (P-50): "I thought you didn't like me after all that we've done." This rejection is very obvious with regard to the Chemo-Nurse. Her Hospital Staff / 150 function is well known by parents and children. She administers the chemotherapy which represents most of the treatment and which also has several side-effects. The most obvious connections children draw when they see her are pokes, injections and IVs. Some drugs also cause nausea and pains which make the children afraid. Quite often younger children turn their head away or even start crying when they see that the Chemo-Nurse is looking at the them or coming closer. It is especially difficult for the Chemo-Nurse to alter the child's rejection of her and to develop a more trusting relationship with the child. In addition children see the Chemo-Nurse walking around with syringes and IV equipment and they do not know who it is meant for, which creates anxiety. If one follows a specific problem with one child one can take a look at the problem solving process and process oriented communications between medical staff and children. One teenage boy had nightmares and had been coming out of his room during the night looking disoriented. Sometimes he had come out despite the fact that he was connected to an IV. (6-44ff) 22:42 Steve comes running out of his room and says "I wanna go home." Nurse 1 goes to him. Steve knees down on the floor. He is bleeding from his hand. Nurse 2 also approaches the scene. Nurse 1: