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Finding the rhythm, maintaining the frame : how children manage living with a parent with a mental illness Mordoch, Elaine Margaret 2005

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FINDING T H E R H Y T H M , MAINTAINING THE F R A M E : HOW C H I L D R E N M A N A G E LIVING WITH A PARENT WITH A M E N T A L ILLNESS by E L A I N E M A R G A R E T M O R D O C H B.N. , The University of Manitoba, 1991 M . N . , The University of Manitoba, 1996 A THESIS SUBMITTED IN P A R T I A L F U L F I L M E N T OF T H E REQUIREMENTS FOR THE D E G R E E OF DOCTOR OF PHILOSOPHY in T H E F A C U L T Y OF G R A D U A T E STUDIES (SCHOOL OF NURSING) THE UNIVERSITY OF BRITISH C O L U M B I A July 2005 © Elaine Margaret Mordoch, 2005 ABSTRACT This grounded theory study examined the perceptions of children living with a parent with a mental illness. The interpretive qualitative design was guided by symbolic interactionism. The aim of the study was to construct a substantive theory that would explain how children perceived and managed the experience of living with a parent with a mental illness. Data were collected through interview, participant observation and field notes. Twenty-two children between the ages of six and sixteen, who were living part or full time with a parent with a mental illness, were interviewed. Theoretical sampling was used to identify incidents and participants; ten of the children were interviewed twice. Data collection and analysis were undertaken concurrently. Constant comparative analysis was used to develop the substantive theory via open, selective, and theoretical coding. The basic social psychological processes suggest that children focus their energy and time on finding the rhythm with their parents while maintaining the frame, by establishing connections within a safe and comfortable distance between themselves and their parents. To find the rhythm, these children monitored their parents and their daily rhythms and then adjusted to their parents' behaviours to try to maintain family security, stability, and their connections to their parents. In maintaining the frame of their relationships with their parents, children preserved themselves by finding a way to have a life and identity of their own without being engulfed by the mental illnesses of their parents. The children also gauged how able they were to preserve themselves and how much they were prepared to remain invested in their parent/child relationships. "Fitting in" was the social structural condition which provided a context for children to consider how they were measuring up in the outside world. The findings suggest that most of these children were comfortable in their homes and wished to be there, that children and parents co-existed in reciprocal relationships and that the children were often managing their circumstances with little information about the mental illnesses or external help. Al l of the children navigated through the ongoing emotional currents that affected their efforts to find the rhythm and to maintain the frame. These children valued their parents and were able to see their parents beyond the mental illnesses, nevertheless, they experienced painful emotions while managing their circumstances. The findings from this study have important implications for nursing practice, education and research, as well as for policy development, to address the larger issues that affect these children and their families. iv TABLE OF CONTENTS Abstract ii Table of Contents iii List of Tables X List of Figures xi Acknowledgements xii CHAPTER ONE INTRODUCTION 1 1.1 Personal Perceptions about the Problem 1 1.2 Background to the Problem 2 1.3 Significance of the Problem 5 1.4 Statement of the Problem 7 1.5 Purpose and Goals of the Study 8 1.6 Research Questions 8 1.7 Theoretical Basis of the Study 8 1.8 Background of the Investigator 9 1.9 Summary 10 CHAPTER TWO LITERATURE REVIEW 12 2.1 Introduction 12 2.2 The Cognitive Development of the Child 16 2.2.1 The Preoperational Child 17 2.2.2 Concrete Operational Child 17 2.2.3 Formal Operations Stage 18 2.2.4 Summary of Cognitive Development 21 2.3 The Emotional Development of the Child 21 2.3.1 Five Levels of Emotional Development Ages 4-12 Years 23 2.3.2 Gender Differences in the Expressions of Emotions 25 2.3.3 The Emotional Development of the Adolescent 28 2.3.4 Summary of Emotional Development 30 2.3.5 Kohlberg's Stages of Moral Development 30 2.3.6 Summary of the Cognitive, Emotional and Moral Development Theories 32 2.4 The Context Provided by Society and the Health Care System 32 2.4.1 The History of the Treatment of Mental Illness and the Health Care System 33 2.4.2 Stigma 37 2.4.3 Psychiatric/Mental Health Nursing Practice 40 V T A B L E OF CONTENTS (Continued) 2.5 Research on Children of Parents with Mental Illness 45 2.5.1 Factors Influencing Children's Outcomes 47 Emotional Deprivation 47 Genetics and Environment 49 Factors Affecting Development 5 3 Familial Influences 54 2.5.2 Resiliency Associated with Parents' Diagnosis 56 Children's Resiliency 57 Individual Characteristics 57 Multi-Causal Factors 60 2.6 Parenting in the Context of Mental Illness 62 2.6.1 Parents with Mental Illnesses as a Specific Population 62 2.6.2 Bias Towards Parents with Mental Illnesses 65 2.6.3 Strain Between Parents' Roles and Patients' Roles in Mental Illness 65 2.6.4 Loss of Custody of Children 67 2.6.5 Insufficient Services for Parents with Mental Illness 68 2.6.6 Summary of Parenting within the Context of Mental Illness 70 2.7 Summary 71 CHAPTER THREE THEORETICAL FRAMEWORK 74 3.1 Introduction 74 3.2 Symbolic Interactionism 74 3.2.1 Self 75 3.2.2 Object 78 3.2.3 Social Interaction 79 3.2.4 Meaning 80 3.2.5 Social Structure 80 3.2.6 Methodological Implications 81 3.2.7 Strengths of Symbolic Interactionism 82 3.2.8 Limitations of Symbolic Interactionism 83 3.3 Summary 84 CHAPTER FOUR METHOD 85 4.1 Introduction 85 4.2 Research Purpose and Goals of the Study 85 4.3 Definitions of Terms 86 4.4 Research Questions 87 4.5 Overview of the Method 87 4.5.1 Nature of the Sample 88 vi TABLE OF CONTENTS (Continued) 4.6 Ethical Considerations 90 4.6.1 Research Considerations with Children 90 4.6.2 Consent and Assent 91 4.6.3 Confidentiality 94 4.6.4 Potential Crisis Situations 95 4.7 Research Procedures 96 4.7.1 Recruitment of Sample 96 4.7.2 Data Collection Procedures 97 Data Collection Tools 98 Conducting The Interviews 98 Open Ended Questions 99 Direct Questions 100 Children's Cues 100 Communication Strategies Using Art, Play and Story 100 Participant Observation Notes 102 Field Notes 102 4.8 Data Analysis 103 4.8.1 Constant Comparative Method of Analysis 103 4.8.2 The Four Stages of Grounded Theory and Related Levels of Coding 103 4.8.3 Theoretical Sensitivity 104 4.8.4 Coding, Open, Selective and Theoretical 105 Open Coding 106 Selective Coding 110 Theoretical Coding 112 4.8.5 Data Saturation 116 4.8.6 Theoretical Sampling 116 4.8.7 Memos 118 4.8.8 Field Notes and Artwork 120 4.9 Criteria for Rigour 121 4.9.1 General Qualitative Criteria for Rigour 121 4.9.2 Grounded Theory Criteria for Rigour 123 Fit 123 Work 124 Relevance 126 Modifiability 127 Parsimony and Scope 128 4.9.3 Relationality and Reflexivity as Criteria for Rigor in Grounded Theory 129 4.10 Summary 133 CHAPTER FIVE FINDINGS 135 5.1 Introduction 135 5.2 Sample Descriptors 136 vii TABLE OF CONTENTS (Continued) 5.3 Sample Characteristics 136 5.3.1 Family Characteristics 138 5.3.2 Characteristics of Children's Lives 141 5.4 An Overview of the Substantive Theory 143 5.4.1 Overview of Finding the Rhythm 145 5.4.2 Overview of Maintaining the Frame 148 5.4.3 Overview of Fitting In 151 5.5 Finding the Rhythm 152 5.5.1 Stages of Finding the Rhythm: Monitoring and Adjusting 156 Nature of Monitoring 157 Ways of Monitoring 160 Watching and Listening 160 Sensing 163 Considering Meaning 165 Influences on Monitoring 167 Acuity of Illness 168 Having Only Part of the Story 169 Contexts 172 Parent in the Hospital 172 Discharge Home 173 From Afar 174 Developmental Stage 175 5.6 Monitoring The Fallout 176 5.6.1 Family Members 176 5.6.2 Daily Rhythms 178 5.7 Nature of Adjusting 180 5.8 Acting 180 5.9 Helping 181 5.9.1 Helping Directly 182 Taking Over and Offering Suggestions 186 5.9.2 Helping Indirectly 189 5.10 Evaluating 193 5.11 Goals of Finding the Rhythm 195 5.12 Summary of Finding the Rhythm 197 5.13 Emotional Currents in Finding the Rhythm and Maintaining the Frame 199 5.13.1 Range of Emotions 199 5.13.2 Intensity of Emotions 200 5.13.3 Mix of Opposing Emotions: Positive and Negative Emotions 201 Conditions where Positive Emotions Overcame Negative Emotions 205 Conditions where Negative Emotions Overcame Positive Emotions 206 5.13.4 Factors Influencing Emotions: Acuity and Hospitalization 209 5.13.5 Emotional Effects of Transitions 212 vii i TABLE OF CONTENTS (Continued) 5.13.6 Summary: Emotional Currents and Their Relationship to Finding the Rhythm and Maintaining the Frame 213 5.14 Maintaining the Frame 215 5.14.1 Trying to Preserve Myself 216 Getting Away 217 Living My Life 222 Selective Sharing 226 Flying Solo 232 Opting Out 235 5.15 Gauging Costs and Benefits of Maintaining the Frame 237 5.15.1 Comparing Past to Present 237 5.15.2 Past Illnesses and Present Status of Parents 241 5.15.3 Comparing Self to Others 242 5.15.4 Comparing Parents and Families to Others 244 5.16 Goals of Maintaining the Frame 248 5.17 Influences on Maintaining the Frame 249 5.18 Summary of Maintaining the Frame 250 5.19 Overall Outcomes of Finding the Rhythm and Maintaining the Frame 251 5.19.1 Identity 253 5.19.2 Connections to Parents and Families 258 5.20 Social Structural Condition: Fitting In 265 5.21 Summary 277 CHAPTER SIX DISCUSSION 278 6.1 Introduction 278 6.2 Overview of the Key Findings 278 6.3 Finding the Rhythm 280 6.3.1 Monitoring and Adjusting 281 6.3.2 Effects of Information about Mental Illness 285 6.4 Maintaining the Frame 293 6.4.1 Countering Engulfment 293 6.5 The Emotional Currents that Affected Children's Lives 296 6.5.1 Children's Emotional Experiences 296 6.5.2 Significant Positive Emotions Directed Towards Parents 299 6.6 Fitting In 300 6.6.1 Living in Poverty 301 6.6.2 The Stigma of Mental Illness 303 6.7 Outcomes of Finding the Rhythm and Maintaining the Frame 304 6.7.1 Connection to Parents 305 Developing Autonomy and Maintaining a Connection 306 6.7.2 Identity 310 6.8 Implications for Nursing Practice, Education, Research and Health Policy 312 6.8.1 Implications for Nursing Practice 313 ix TABLE OF CONTENTS (Continued) Invisibility of Children within the Psychiatric/ Mental Health System 313 Children's Perceptions of Lack of Information on Mental Illness 315 Strategies that Children Used to Manage their Situations 316 Children's Perceptions of their Relationships with their Parents 317 6.8.2 Implications for Nursing Education 318 6.8.3 Implications for Nursing Research 318 6.8.4 Implications for Health Care Policy 320 6.8.5 Summary of Implications of Findings 322 6.9 Limitations of the Study 323 6.10 Summary 324 6.11 Conclusions 324 References 327 Bibliography 363 Appendices 364 Appendix A: University of British Columbia Ethical Approval 364 Appendix B: University of Manitoba Ethical Approval 366 Appendix C: Information Sheet for Parents/Legal Guardians of the Child 368 Appendix D: Parental Informed Consent for Child to Participate in the Study 372 Appendix E: Information Sheet for School Age Children 6-12 Years 376 Appendix F: Information Sheet for Adolescent Children 13-16 Years 378 Appendix G: Interview Questions for School Aged Children 6-12 Years 380 Appendix H: Interview Questions for Adolescent Children 13-16 Years 383 Appendix I: Assent Form for Children Aged 6-12 Years 387 Appendix J: Assent Form for Adolescent Children Aged 13-16 Years 390 Appendix K: Participant Observation Guide 393 Appendix L: Parental Consent Form for Participant Observation 395 Appendix M: Family Member's Consent Form for Participant Observation 398 T A B L E OF CONTENTS (Continued) Appendix N: Confidentiality Waiver for Transcriber 400 Appendix O: Poster 402 Appendix P: Letter Requesting Access as a Nurse Researcher to Study Setting 404 Appendix Q: Script for Intermediary to Introduce the Study 407 Appendix R: Parents'/Legal Guardians' Demographic Form 410 Appendix S: Children's/Adolescents'Demographic Form 413 Appendix T: Revised Interview Questions 415 Appendix U: Vignette 417 Appendix V: Early Memo 419 Appendix W: Late Memo 425 Appendix X: Interview 08, Girl, Age 10. Artwork: Identifying Signs Of Depression and What to Do 429 Appendix Y: Interview 13/1, Girl, Age 11. Artwork: Managing a Panic Attack With Help from the Well Parent 431 Appendix Z: Interview 05, Boy, Age 9. Artwork: Using Humour to Help the Depressed Parent 433 Appendix A l : Interview 04, Boy, Age 6. Artwork: Using Humour, Telling Jokes To Help the Depressed Parent 435 Appendix BI: Interview 14/1, Boy, Age 13. Artwork: Before and After the Panic Attack 437 Appendix C l : Interview 13/2, Girl, Age 11. Artwork: Putting Mental Illness In Perspective 439 X I LIST OF TABLES Table 5.1 Sociodemographic Data 137 Table 5.2 Principal Diagnosis of Parent and Co-morbid Diagnosis 138 Table 5.3 Family Characteristics 139 Table 5.4 Utilization of Psychiatric Services in the Past Two Years 140 Table 5.5 Parents' Social Support When 111 140 Table 5.6 Children's School Grades, Extra Curricular Activities and Services Used 142 LIST OF FIGURES Figure 5.1 The Basic Social Psychological Processes: Finding the Rhythm and Maintaining the Frame 144 Figure 5.2 The Basic Social Psychological Process of Finding the Rhythm 155 Figure 5.3 The Basic Social Psychological Process of Maintaining the Frame 215 Xll l ACKNOWLEDGMENTS With special thanks, I would like to acknowledge a number of individuals who have provided assistance and encouragement. Dr. Wendy Hall, my dissertation supervisor, has shared her wisdom and guided me throughout this project with meticulous attention to detail, rigour, and scholarliness. My committee members, Dr. Connie Canam, Dr. Wanda Chernomas, and Dr. Carol Jillings have shared their insights and encouraged me in the completion of this project. I thank each of you for your unique contributions to my work. My sincere thanks to Dr. Veryl Tipliski for being a kind and exacting mentor for many years and for her support in the completion of this project and to Dr. Sandy Kluka for her efforts in developing this initiative between the University of British Columbia and University of Manitoba. Many thanks to my family who have always encouraged me in my studies; my partner David Stacey, who has generously and with good spirit, devoted his time to completion of this project, my mother, Kathleen Maclvor MacDonald, who has always encouraged education, and my granddaughter, Essence Bella, who has both patiently and impatiently waited for me to finish the last page. I also wish to acknowledge funding for this study from the Centre of Excellence for Child and Youth Centered Prairie Communities and the Canadian Nurses Foundation. My sincere appreciation to the children for sharing their lives with me, and to their parents who allowed and encouraged them to participate in the study. Lastly I would like to dedicate this work to Penny, who despite developing schizophrenia at the age of 25, provided a positive role model for her two children, in her all too short life. 1 CHAPTER ONE INTRODUCTION Personal Perceptions about the Problem During my clinical practice as a mental health nurse in both acute and emergency psychiatry, I have been intrigued by the etiology of mental illness, the influence of childhood experiences on its development, and its impact on the family, particularly the children. As the Program Manager of COPE, Care of Psychiatric Emergencies, I had the opportunity to witness clinical situations involving the hospitalization of parents who had been diagnosed with mental illnesses. During hospitalizations, generally health care providers offered minimal formal explanation and assistance to the children beyond survival needs, such as placing the children in care and ensuring that their basic needs of food and shelter were met. One particular incident made a critical impression on me. A single mother, with three children, the eldest 13 years of age, was accompanied by the police and involuntarily admitted to the hospital via the emergency department. Responding to an inquiry regarding the children, the police stated that the children had been taken to Child and Family Services and that "they were not in much better shape than their mother". I was left with the impression that these children were already deemed to have behavioural problems. There appeared to be limited intervention from mental health services to mitigate the effects of living with a parent with mental illness, and some people appeared to view the children's mental health as compromised. This clinical situation affected me profoundly. My empathy and curiosity about children's experiences is perhaps increased by the fact that, at the age of eight, I experienced the death of a parent. I have wondered whether having a parent with a mental illness represents a form of death and loss for the children. From my life experience and my practice in mental health nursing, I have become increasingly interested in how children experience their parents' mental illnesses, and in particular, what they do to manage in the context of limited professional support. My understanding of the mental health 2 system and my exploration of the literature have reinforced my belief that children's perceptions of their experiences of living with parents with mental illnesses are not well understood. Lack of consideration of children's perceptions prevents effective intervention that could assist them to successfully manage their experiences. My experiences and reflections have led me to the proposed topic for my doctoral dissertation: The experience of children living with a parent with mental illness. Background to the Problem The World Health Organization (WHO) indicated that four of the ten leading causes of disability in developed nations are mental disorders which account for 23% of the disease burden in high-income countries (WHO, 1999). The Disability-Adjusted Life Year (DALY) measures the impact of premature death and disability on populations. Because this instrument measures time lived with disability, the burden of mental illness has become more visible and significant (Allender & Spradley, 2001; WHO 2003, 2001). The impact of the burden of mental illness is demonstrated in biological, psychological and social problems for people living with mental illnesses. Physiologically, many people struggle with medication side effects which influence their functioning and quality of life, compliance with medications, poor nutrition, vulnerability to communicable diseases and varying degrees of ability to care for themselves. Psychologically, people living with mental illnesses often struggle with concurrent chemical addictions and poor self esteem. Socially, people living with mental illnesses often cannot develop or sustain supportive relationships within their lives (WHO, 2003; 2001). By 2020 it is predicted that the global burden of mental and neurological disorders will account for 15% of global disease burden (WHO, 2001). Statistics indicate that one out of five Canadians will suffer from a mental illness during their lifetime. Furthermore, 80% of the Canadian population will experience the effects of a mental illness through a colleague, friend, or family member (Health Canada, 2002). Research 3 by the Manitoba Center for Health Policy (2004) revealed that 33% of people, over the age of ten years, had been treated for mental illnesses within the past five years. In addition, people with low incomes and those in northern communities require the most service but receive the least service. Social stigma and fear of mental illness contribute to the problems people experience while living with mental illnesses (Allender & Spradley, 2001). The severity and nature of the disease also influences the burden people experience when living with mental illnesses. The incidence of particular diagnoses provides some insight about the impact of mental illnesses on society. Statistics on the global prevalence of depression and its resultant burden on quality of life are significant. The Global Burden of Disease indicates that, in developed countries, major depression is the leading cause of disability (WHO, 1999). Depression is the most common psychiatric disorder and accounts for almost 12% of all disability among all diseases (WHO, 2003). Within the age group of 15 - 44 years of age, depression is the second cause of disability (WHO, 2003). Gotlib and Avison (1993) stated that 8 to 18% of the population will develop a clinical depression at least once in their lifetime, while Health Canada (2002) reports that 8% of adult Canadians will experience depression and 1% will experience bipolar disorder. Moreover, 8 to 15% of women develop a postpartum depression (Grace, Evindar & Stewart, 2003; Person, 1992). Canadian statistics indicate that hospitalizations for mood disorders are one and one-half times higher for women than men. Hospitalizations for bipolar disorders are increasing for both women and men between the ages of 15 and 24 years (Health Canada). Schizophrenia, while affecting only 1% of the population, is extremely costly in terms of human suffering and loss of potential. As such, it greatly impacts family members' experiences (Torrey, 1983). In Canada, over half of women who develop schizophrenia retain some custody of their children (M.V. Seeman, personal communication, October 24, 2002). Statistics for Canadian children who live with a parental mental illness are difficult to obtain; however, 4 Gopfert, Webster and Seeman (1996) suggested that 50 of every 100 mentally ill patients are living with children. Oates (1997) noted that 60% of women with serious chronic mental illnesses have children under the age of 16 years and that 26% of women with schizophrenia live with children under the age of 16 years. In addition, 12% of all new female psychiatric referrals have a child under the age of one, and 25% have a child under the age of five (Oates). Thus women with mental illnesses are parenting children and while these women may come into contact with the mental health system, their role as parents may be overlooked (Nicholson & Biebel, 2002). Given the prevalence of mental illnesses, and the invisibility of patients as parents within the mental health system, health care professionals, inclusive of nurses, are challenged to understand how family relationships are affected by mental illnesses (Blanch, Nicholson, & Purcell, 1994; Nicholson, Biebel, Hinden, Henry, & Stier, 2001; Mowbray, Oyserman, & Ross, 1995; Oates). Developing an understanding of the effects of mental illness on family members will facilitate the development of strategies that promote the health of children and families. Clearly, statistics suggest a need for nursing to be proactive in assisting children, families and communities to manage the burden of living with mental illnesses. Little is known about fathers with mental illnesses who are involved in the care of their children. The majority of the research on parents concentrates on the role of the mother; reference to fathers is made only with respect to the increased pathological effects on children when both parents have a mental illness (Gammon, 1983). Ekdahl, Rice and Schmidt (1962) noted that the mental illness of the father potentially affected family finances but had little effect on daily functioning within the home. Such a claim appears to separate loss of income from the effects of such losses on families' day-to-day lives and the effects of job loss on male self-esteem. Feldman, Stiffman and Jung (1987), found a positive association between a father's mental illness and stressful life change events, precipitated by financial losses. In today's society, fathers are becoming more involved with rearing their children than in previous 5 generations and the effects of paternal mental illnesses may be more complex. It is unknown how many fathers with mental illnesses are parenting their children, either alone or in partnership. Significance of the Problem Due to community mental health initiatives, shorter hospital stays, and the increased incidence of mental illness (Manitoba Center for Health Policy, 2004), more parents with mental illnesses will be raising their children in the community. The new system of psychiatric care places patients in the community much earlier and often leaves the burden of their care to the family. Parents with mental illnesses may be expected to resume their family roles as soon as they return to the community. Consequently, they may have responsibility for parenting when they are still having difficulty meeting their own needs. Services to assist parents with children concentrate on basic survival needs, such as food and shelter, with little family intervention focused toward parenting skills or the emotional and psychological needs of the children. Further, when well parents are burdened with caring for a partner with mental illness, they may not be fully available to children. This situation has the potential to augment the effects of parental mental illness. Children in single parent homes may require diverse care arrangements and may be at risk of witnessing more acute stages of the illness. Research suggests that parental mental illness places children at triple the risk to develop mental health problems (Gammon, 1983; Gershon et al., 1982; Warner, Weissman, Fendrich, Wickramaratne, & Moreau 1992; Weismann et al., 1984). In one study, 65% of children whose parents had been diagnosed with depression met the criteria for psychiatric diagnoses (Keller et al. 1986). Meta-analyses of studies from a ten year period indicated that 61% of children who had a depressed parent developed a psychiatric disorder by adolescence and that 40 to 70% of those children had a co-morbid diagnosis of substance abuse, anxiety and dysthmia (Beardslee, Versage, & Gladstone, 1998). Other research has indicated co-morbid diagnoses of conduct 6 disorder, attention deficit disorder, depression, and oppositional defiant disorder are increased in children whose parents suffer from depression (Weissman et al., 1984; Weissman, Paykel, & Klerman, 1972; Welner & Rice, 1988). Wickamaratne and Weissman (1998) indicated that depression, anxiety, and conduct disorder are increased in children whose parents have depressive disorder but that there is no increase in any of these diagnoses in adolescence. Parental depression may have other effects on a child's life such as shyness, isolation and reading difficulties (Rolf & Garmezy, 1974). On the other hand, parent-child interactions have been shown to be satisfactory in some families despite a diagnosis of parental depression (Anthony, 1974; Burbach & Borduin, 1986; Keller et al., 1986; Rutter, 1978; Werner & Smith, 1982). In concert with parental mental illness there are other complicating features, such as marital discord, illness chronicity, and lack of parental availability that may predict children's mental pathology (Beardslee, 1984; Rutter & Quinton, 1984; Sameroff, Seifer, & Zax, 1982; Werner & Smith). While a substantial body of literature exists on the children of parents with mental illnesses, the research has largely been quantitative. Some studies have suggested that some children living with parental mental illness were "super kids", however, those projects have largely ignored the subjective and emotional experiences of children (Fisher, Kokes, Cole, Perkins, & Wynne, 1987; Garmezy, 1987; Kauffman, Grunebaum, Cohler, & Gamer, 1979; Werner & Smith, 1982). There has been relatively little research on intervention strategies to mitigate the identified risks for children because the majority of efforts are directed at identifying and treating pathology that develops later in life (Bleuler, 1974; Canadian Mental Health Association, 1987; Devlin & O'Brien, 1999; Dunn, 1993; Ekdalh et al., 1962; Escalona, 1974; Grunbaum & Gammeltoft, 1993; Lancaster, 1993; Philips, 1983). Absent from this body of literature is the subjective experience of children living with a parent with mental illness. Findings from the professional literature are in opposition to the lay 7 literature, which provides retrospective accounts of adults who have lived in homes with a parent with a mental illness. Those adults claimed their outward childhood competence hid their inward chaos and discomfort (Marsh & Dickens, 1997). The effects of parental mental illness on children may be better understood by using qualitative methods, which emphasize children's perceptions. Those approaches would also address parents' concerns about their children's perspectives being neglected (Wang & Goldschmidt, 1994; 1996). Qualitative research strategies would enable understanding of the effects of parental mental illness on children, inclusive of their perceptions and aid in the development of meaningful primary interventions. As such, nursing is challenged to develop understanding of children's perceptions about living with parental mental illnesses in order to understand and intervene meaningfully in children's lives. Nurses are in a pivotal position to intervene with children and families who are living with parental mental illnesses. Both public health nurses and psychiatric mental health nurses interface with this population and can be instrumental in providing primary, secondary, and tertiary services and developing health care policies to assist children and their families. In order to do so, nursing research soliciting the perceptions of children is needed to help nurses develop services and policies which address children's needs. Statement of the Problem There is a considerable body of literature about children whose parents have been diagnosed with mental illness; however, the work has examined the factors associated with children's outcomes reflective of researchers' assumptions about children's pathology, diagnostic categories and resilience. Because research that examines children's perceptions about managing family life with a parent who has mental illness has not been undertaken, professionals have limited understanding of the dynamics that characterize children's experience of family life circumstances and how children manage those dynamics in a complex social context. 8 Purpose and Goals of the Study The purpose of the study is to understand children's perceptions of living with a parent with mental illness. The specific objectives of the study are to understand how children manage their lives in the context of living with a parent with mental illness and to understand children's perceptions of factors that have helped or hindered their efforts to manage their lives. The study goals are to construct a substantive theory that will assist nurses to plan care for children and families living with a mental illness and to develop further research questions and hypotheses based on children's experiences of living with a parent with mental illness. Research Questions The general question for the study was: How do children experience living with a parent who has a mental illness? Specific sub questions further directed the study including: How do children manage the experience of living with a parent with mental illness? What is helpful to manage this experience? What is unhelpful to manage this experience? What are the outcomes for children who are trying to manage their experience of living with a parent who has a mental illness? Theoretical Basis of the Study The theoretical framework for the proposed study is symbolic interactionism, which emphasizes the connection between symbols (shared meanings), and interactions (non-verbal and verbal actions and communications). That interplay is pivotal to our understanding of how children experience the mental illness of a parent. La Rossa and Reitzes (1993) underscored the importance of symbolic interactionism for understanding dynamics and roles in family life. Thus, the experience of children living with a mentally ill parent is well addressed with a symbolic interactionism approach, which has been utilized in family studies (La Rossa & Reitzes). I will describe Symbolic Interactionism in detail in Chapter Three of the dissertation. 9 Background of the Investigator I have been a Registered Nurse specializing in Psychiatric Mental Health nursing since 1987. I have obtained Baccalaureate and Master Degrees in nursing from the University of Manitoba and a counseling certificate with honours from Red River College. Since 1999,1 have been enrolled in the doctoral program at the School of Nursing at the University of British Columbia. During my studies, I have concentrated on the area of psychiatric mental health nursing. My clinical practice as a registered nurse has been in the area of psychiatric mental health in acute care, emergency care, and in the community working with abused women and the well elderly who experience depression. As part of my practice as a psychiatric mental health nurse in emergency, I had the opportunity to develop and implement programs and to practice within the Care of Psychiatric Emergencies (COPE) program (Mordoch, 1995). This program attempted to improve access to services for mental health clients and their families, to decrease stigma regarding mental illnesses within the emergency room, to provide seamless care for clients and their families, and to advocate for appropriate services. Clients and family members were invited to participate on the advisory board of the program and were an integral part of COPE program development and evaluation. From this experience, my practice of psychiatric mental health nursing became more inclusive of clients as partners in planning care. Experiences within this program also heightened my awareness of issues for children who were living with parents with mental illnesses and caused me to reflect on existing nursing interventions for this population. I have been involved in action-based research projects largely resulting in new services for the clients. Examples of these projects are: the St. Boniface and St. Vital Community Health Needs Assessment resulting in the formation of a community nurse clinic (Gregory, Mordoch, Wotton, McKay & Hawranik,1995; Russell, Gregory, Wotton, Mordoch, & Counts, 1996); the 10 Norman Primary Health Care Project, resulting in the adoption of a community primary health care model (Gregory, Patterson, Mordoch, Davidson Dick, & Katz, 1998); an evaluation of an inner city harm reduction program for marginalized people resulting in continued levels of funding for this population (Village Clinic, 1998) and COPE, a Short Term Emergency Project, which contributed to the development and permanent funding of the role of mental health nurses in the emergency room (Mordoch, 1995). I have also served as a board member of the Anxiety Disorders Association, a member of the Advisory Board for the Formation of a Support Group for Children Living with a Parent with Mental Illness, and a volunteer with Nurses at Risk, an intervention program for nurses with addictions. Al l of my experiences have assisted me to know clients and families at different levels of functioning within the trajectory of mental illness and mental health. These experiences have provided me with both a deeper clinical understanding and a deeper curiosity about how children manage the experience of living with a parent with a mental illness. Summary In this introductory chapter, I have explained the background and significance of the problem. I have articulated the importance of the problem from my personal perspective, the purpose, goals and the research questions of my study and indicated that symbolic interactionism is the theoretical framework underpinning the study. In Chapter Two, I will provide an overview of theories about the cognitive and emotional development of children. As well, I will provide a critical analysis of this literature including the classic and contemporary research on children living with a parent with a mental illness. I will also discuss the context of the mental health care system as it relates to psychiatric/mental health nursing practice. Finally, I will discuss the literature about parents who are parenting with a mental illness. In Chapter Three, I explain the theoretical framework for the study, symbolic interactionism. In Chapter Four, I describe the research design and the grounded theory method, the ethical considerations of doing research 11 with children, study procedures, data collection, constant comparative analysis, and how rigour is achieved in grounded theory. Chapter Five provides the study sample characteristics and a description of the substantive theory that I developed from the data. Finally, Chapter Six includes a discussion of the study findings in the context of the literature, the limitations of the study, and the implications of the study for nursing practice, education, and research. References and appendices follow the last chapter. 12 CHAPTER TWO THE LITERATURE REVIEW Traditionally, the purpose of the literature review is to ascertain what is already known in relation to the problem of interest, to explore aspects of the problem about which little is known, and to bring the problem into sharper focus in order to formulate research questions. The literature review also provides a broad conceptual context into which the problem will fit and thus contribute to the larger body of knowledge (Polit & Hungler, 1991). The literature review is also intended to demonstrate the significance of the research problem. Qualitative researchers, review the literature in order to help focus the study purpose, however, there is also intent to avoid preconceiving the research findings (Streubert-Speziale & Rinaldi-Carpenter, 2003). Undertaking an extensive literature review at the end of a qualitative study places the findings in the context of what is already known about the phenomena. The purpose of the literature review in grounded theory is controversial. In order to clarify decisions concerning the literature review, I will begin with a discussion of the purpose of a literature review in grounded theory as proposed by Glaser (1978; 1992; 1998). In the remainder of the chapter, I will discuss the rationale for inclusion of specific literature reviewed and critically analyze that literature within the context of the current health care system. Glaser (1992; 1998) has advocated reading in substantive areas that are not directly related to the study topic in order to avoid contaminating the emerging theory. He also argued that such reading will maintain a researcher's theoretical sensitivity, awareness of conceptual codes, and use of social theory. He suggested that the literature necessary to place the findings in a broader context will become known with the development of the theory. This reading may also be useful to the researcher for generating categories and properties, stimulating thinking, and providing direction for theoretical sampling. Glaser (1992; 1998) suggested that the researcher read in a wide variety of areas and use sources of information to remain sensitive to 13 theoretical ideas and to weave the appropriate literature into the developing theory during the write-up stage of the research process. Appropriate literature can consist of a variety of sources, for example, diaries, manuscripts, records, reports, and biographies (Glaser, 1992). Glaser (1998) suggested that it is not advisable to turn to the substantive literature too early, as the researcher may preempt the findings of the study. Glaser (1992; 1998) created a list of reasons for not doing a literature review prior to beginning a study including: being "grabbed" by existing concepts; developing a preconceived "professional" problem of no relevance; becoming overly influenced by pundits in the field, which would detract from the researcher's own confidence in developing a theory, eroding theoretical sensitivity with rhetorical jargon, and lacking a sense of which literature is relevant prior to the study. Stern (1980) concurred that attempting a literature review before the study is unnecessary. She argued that it might be detrimental to the study and suggested selective sampling of the literature as the theoretical analysis developed. In summary, some grounded theorists have argued that a literature review of the topic under study has the potential to stifle and constrain the researcher's attempts to find relevant concepts that work and fit and places the researcher at increased risk to develop concepts that verify existing constructs in the literature. Funding sources and academic standards require a traditional literature review. Morse (1998), in her discussion on designing funded qualitative research, posited that the qualitative researcher read in the general area of the study topic, become familiar with the literature but not bogged down in minute detail, and return to the library later in the study. Considering the conflicting views of the utility of a literature review, I have attempted to occupy a middle ground. In spite of my awareness of the potential pitfalls of conducting a literature review prior to beginning a grounded theory study, I conducted my literature review to establish the credibility of the research question for funding and academic purposes and to situate my research questions in existing knowledge. While Glaser (1998) suggests that avoiding the 14 literature review assists the researcher to approach the research subject "tabla rasa", (without preconceptions of what should happen in the data) as opposed to being burdened with constraints and preconceptions, I would argue that this is unlikely to occur when a researcher is studying in her substantive area. A researcher would be already immersed in the literature in that area and would be aware of seminal work and important concepts. Nonetheless, Glaser's position that preconceived ideas can influence the data analysis is well taken. For example, in my substantive area, the emphasis on the critical importance of the first three years of development has overshadowed other areas of child development, such as, adolescent brain development, which is now being noted as equally important (, Giedd, 2004). My approach to the literature review allowed me to develop an understanding of the existing research which satisfied academic and funding purposes, while I attempted to minimize the influence of the literature review on any preconceptions about the study findings. In attempting to contain the influence of the literature review, I consistently questioned the influence of my assumptions on interpreting the data, thereby, ensuring that my interpretations were not unduly influenced by ideas external to the data. In other words, while realizing that I could not approach the literature or my study "tabla rasa" (without any biases), I attempted to be aware of my biases and to ensure the developing theory reflected the data as much as possible. In placing my literature review in the context of the health care system, it is important to elucidate the changes that have occurred in the system. Generally, mental health care reform has resulted in shorter hospitalization for mental illness and earlier discharge to the community leaving the family to become the major providers of the long term care necessary for individuals with chronic and persistent mental illness (Doornbos, 2002). Hatfield (1994), estimates that 60% of families of the mentally ill are primary caregivers with little respite or guidance from the mental health care system. Such changes have created situations wherein children are 15 experiencing more acute periods of mental illnesses within their family homes and more involvement in family care giving for their parents. Children, in families with parental mental illness, have long been recognized as relatively powerless within society and the family system (Canadian Mental Health Association, 1987; Shachanow, 1987). Currently, there appears to be few resources for children living in these circumstances (Nicholson et al., 2001). As such, it is conceivable that they are more vulnerable to the effects of stigma, which represents a "formidable obstacle to future progress" (United States Department of Health and Human Services, 1999, p. 5) in the care and treatment of mental illness. Although understanding and treatment of mental illness has dramatically improved, several factors contribute to the stigmatization of the mentally ill and their families. These factors include the double burden that families and clients have to bear, namely the mental illness and the societal shame of having a mental illness, the silence and secrecy surrounding mental illness and the limited life opportunities that result from the illness experience. Given the nature of the population I am studying and the phenomenon of interest, I will discuss the literature under the following topics: the cognitive and emotional development of children, the context provided by society and the health care system, research on children of parents with mental illnesses, and parenting in the context of mental illness. Due to the lack of empirical information about children's perspectives about living with a parent with mental illness, I have reviewed the literature on parents' perspectives of parenting with a mental illness. I have chosen to review the cognitive and emotional development of children in order to understand the theories about childhood norms and the critiques of children's development. I also wanted to gain an understanding of how children process information at different ages and how they express their emotions. This knowledge provided me with direction for approaching children of different ages (from 6 to 16 years of age) and accessing their perceptions. 16 A review of the context provided by society and the health care system was helpful to understand the macro issues that influence children and their families. This also provided me with an understanding of the context in which nursing practice is situated. I believed it was important to consider the context that society, in general, and the mental health care system, in particular, provided for children who were living with parents with mental illnesses, especially due to the recognized stigma associated with mental illness. Reviewing the literature on children's outcomes associated with their parents' diagnoses and the multi-causal factors affecting children's outcomes and experiences provided me with an overview of the dominant theoretical perspectives concerning my study population and the opportunity to further situate my research questions. The classic and contemporary research on children living with a parental mental illness (depression, bipolar illness, and schizophrenia) helped me to understand the influence of the biomedical model on the development of this literature. I have also incorporated the literature that has examined parents' perceptions of parenting while struggling with mental illnesses. I will begin by discussing and critiquing the literature on the cognitive and emotional development of the child. The Cognitive Development of the Child Within the field of childhood cognitive development, Piaget's work, which spanned six decades, has been influential (Bee, Boyd, & Johnson, 2003); it has provided the basis for most of the developmental literature. At the same time, Piaget's (1952; 1970) stages that describe change over the growth and development of children are controversial. Piaget's theory has been critiqued for being primarily descriptive, with insufficient development of underlying process; placing little emphasis on individual differences and diverse pathways of learning; and negating the influences of the context wherein children's learning takes place (Harter, 1999). In this section, I will provide an overview of Piaget's stages of cognitive development which is relevant 17 to the ages of the study population, 6 to 16 years of age. I will also discuss the neo-Piagetian critiques of cognitive development. The Preoperational Child The preoperational child is between the ages of 2 - 7 years. The preoperational stage is characterized by some limitations in thought processes that may cause a child to focus on one aspect of the situation and to have difficulty considering other aspects (Piaget, 1952; 1970). Children at this stage have limited abilities to differentiate appearance from reality. Preoperational logic is further limited by the concept of irreversibility, wherein a child cannot understand that an action can go more than one way, i . e., children will worry that a cut will not heal (Piaget, 1952; 1970). On the other hand, these children are developing symbolic representations and classification of objects and beginning to understand cause and effect. While Piaget (1970) suggested that egocentric children did not have the cognitive capabilities to develop empathy, recent research has suggested that younger children are more cognitively competent than previously suggested and that older children and adults are less cognitively accomplished than their representations have suggested (Graue & Walsh, 1998). Research has also demonstrated that children are much more capable of displaying empathy than previously believed, which challenges the idea that young children have delayed empathic reactions related to their egocentric patterns of perception (Zahn-Waxier, Radke-Yarrow, Wagner, & Chapman, 1992). At this stage of development, children still tend to confuse reality and fantasy and have limitations in logic. The Concrete Operational Child A child in the concrete operational stage of development (between the ages of 7-11 years) becomes less egocentric, more proficient at logical reasoning, and better able to separate fantasy from reality. These children are able to reflect on what they know and how they can use the information. They begin to use more complex cognitive strategies (Piaget, 1970). Piaget 18 determined that children's moral reasoning develops as the preoperational and concrete stages of thinking develop; egocentricity decreases as children are more cognitively able to consider alternate perspectives and to interpret rules rather than blindly following them (Piaget, 1965). The moral development of the child occurs, which is characterized by constraint and rigidity in its first stage and flexibility in its second stage (Piaget, 1965). Piaget's work on this age group has received less critique than his other stages. Findings from more recent research, particularly studies on conservation (matter can change in appearance without changing in quantity) which Piaget held did not occur before the age of 5 years, have generally supported Piaget's original ideas on when knowledge of conservation is achieved (Piaget, 1970; Sophian, 1995). Formal Operations Stage A child at the formal operations stage, which is generally held as occurring between the ages of 12 and 19, is considered an adolescent. This stage covers almost a decade, which encompasses a wide range of development. Formal operations comprise the ability to think abstractly, deal with possibilities, and participate in hypothetical deductive reasoning (Piaget, 1970). Elkind (1984) identified immature thought patterns that are also prominent, which may lead to argumentativeness, indecisiveness, a perception of invulnerability, hypocrisy, and self-consciousness. Some of these behaviours may be explained by current research into brain development, which provides insight to the changes in underlying neural processes that affect cognitive development (Giedd, 2004 Dr. J. Giedd (2004), of the Institute of Mental Health, Maryland, suggests that the brain continues to mature into the adolescent years through the process of extensive and significant structural changes (2004). Piaget's work (1952; 1965), while acknowledging neurological development and constraints, could not include the evolving knowledge on brain development made available by neuro-imaging techniques. Neuro-imaging research has shown that, during 19 adolescence, nerve fibers connecting the left and right hemispheres of the brain thicken and process information more efficiently. Neurological pruning occurs, wherein neural pathways that are not used die. This neural pruning is affected by genetics and also by the activities in which children are engaged (Giedd). For example, practicing the piano strengthens the brain neurons controlling the fingers. In adolescence, the prefrontal cortex, where sound judgment is developed, shrinks as neural connections are pruned, but continues to develop over the teen years. The cerebellum also changes dramatically with increased complex neuronal pathway development, which may play an important function in developing thought processes (Giedd, 2004; Wallis, 2004). Neuro-imaging research, such as research conducted with magnetic resonance imaging (MRI), suggests that the anatomical development of the adolescent brain is linked to adolescents' risk taking behaviours, decision-making, and sleep changes including difficulty in getting up and going to bed at reasonable hours. The development of childhood neuropsychiatric disorders, such as Tourette's syndrome, attention deficit hyperactivity disorder (AJJHD) and schizophrenia, are likely related to anomalies in brain development. MRI research highlights the development of cognitions across the life span, increases our understanding of the changeable behaviours of adolescents and offers an explanation for the development of mental illness in adolescents (Giedd). While Piaget (1952; 1965) maintained that cognitive development was universal in all children and dependent on neurological maturation, he did not take into account individual differences and societal contexts. Research on individual differences, cognitive processes, and societal contexts has been undertaken by neo-Piagetian theorists. Case (1992) and Costanzo (1991) argued that there is significant unevenness in cognitive development, that Piaget did not recognize, and that individual differences occur at every age. Newer theories, such as, information-processing theory (Siegler, 1991) and social cultural theory (Rogoff, 1990; 20 Vygotsky, 1978), suggest that the process of developing cognition is more complex than Piaget's theory of universal development suggested. For example, information processing theory (Siegler) breaks down the processes of cognitive development to micro processes such as strategy construction and encoding. Strategy construction occurs as concepts are combined to achieve higher order generalizations. Encoding occurs as the most salient features of objects and events are remembered and stored as internal representations (Siegler). Theories, such as Vygotsky's (1978) social-cultural theory, link the development of complex thinking to social and cultural milieus that influence cognitive development. A child's development may be scaffolded, wherein a child is able to accomplish a task beyond what is thought to be a usual capability, when learning is assisted by an older child or adult. Availability of such learning opportunities creates a zone of proximal development, which allows children to accomplish tasks that they could not achieve alone (Vygotsky). Recent work acknowledges that, while it is helpful to understand children's cognitive developmental norms, it is important to recognize the influence of cultural and environmental contexts on children's cognitive development (Graue & Walsh, 1998). Building on Piaget's (1952; 1969; 1970) significant contribution to the theory on cognitive development in children, recent research has provided increasingly complex insights into the processes comprising cognitive development. My consideration and critique of the basic theories of children's cognitive development provided me with a context for considering children's experience of living with a parent with mental illness and an understanding of children's expected cognitive development and influencing factors. Understanding the norms of cognitive development and the critiques raised around those norms also assisted me to relate to the children throughout the research process. This information guided my formulation of age appropriate questions, communication strategies, and efforts to put the child at ease in the interview session. 21 Summary of Cognitive Development In reviewing the theories of children's cognitive development, it is clear that Piaget's work remains influential despite its critiques (Harter, 1999). Piaget's (1952; 1970) views on children's cognitive abilities provided a structure and context for my research interviews with children, rather than a way of viewing how children generally operate. For the purposes of this study, Piaget's notion of constructivism, wherein a child as an active participant is constructing his or her understanding of the world, fits well with the theoretical framework of symbolic interactionism. Thus, while I found Piaget's model useful, I used it only as a guide. I remained open and flexible about the uniqueness of each child's cognitive development and socio-cultural life context. Equally important to and intricately connected with cognitive development is the emotional development of the child. The following section will provide a discussion on the emotional development of the child. The Emotional Development of the Child Emotions define the quality of human experience, facilitate prosocial behaviour and creative problem solving, and form the basis of conscience and moral behaviour (Izard, 2002). Emotions have a profound influence on perceptions, cognition, and motivational states, which influence actions (Izard). Subjective reactions begin in infancy; emotional response patterns become part of a child's personality. Initially emotions are developed in response to physiological demands. For example, an infant when hungry becomes distressed and cries. Expressed emotions thus facilitate communication of one's inner conditions. Emotions further guide and regulate behaviour as the child develops. In mid-toddlerhood, children begin to express pride, shame, and guilt, which are correlated with their developing objective self-awareness (Lewis, 1991; 1994). A child's emotional development is influenced by the growth and developmental tasks of each age. Developmental tasks, such as the attainment of Erickson's initiative, competence, and 22 identity (Erickson, 1950; 1963), interact with other socially and culturally determined factors related to developmental stages (Denham & Kochanoff, 2002). Emotional development is affected by children's social contexts, inclusive of their cultural traditions, family structures, and societal values about the nature of childhood. For example, children may be required to participate in specific cultural tasks, such as a bar or bat mitzvah. Also the increasing numbers of Canadian children, who are now living in single parent families, suggest that children are adapting to changing family configurations (Statistics Canada, 1996). The social construction of adolescence in Western society has extended the period of adolescence (Otto, 1988). This is, in part, due to growth trend of increased height and weight, earlier physical maturation, and social, economic, and occupational influences (Beckman Murray & Proctor Zentner, 1997). As children attain physical maturation earlier, the expectations of developmental tasks may also shift, because children may be required to attain developmental tasks and goals at an earlier age. Much of the emotional developmental literature suggests a reciprocal relationship between emotion and cognition (Harter, 1999; Izard, 2002). Research supports the correlation between neurological maturation within the brain and the emotional development of children (Giedd, 2004; Statistics Canada, 1996). As children's analytical abilities increase, they are able to understand more complex emotions such as shame, guilt, and pride, and to appraise the meaning of a situation (Lewis, 1987; 1992; Meerum-Terwogt & Stegge, 2001). Diffuse emotional states occur in infancy, but they progress to primary emotions, such as contentment, joy, interest, surprise, distress, sadness, anger, disgust and fear. Primary emotions are experienced and expressed within the first six months of life (Lewis, Sullivan, Stanger, & Weiss, 1989). As children develop self-awareness, they begin begin to experience self-conscious emotions and some aspects of self evaluation by the middle of the second year (Lewis, 1991; 1994). Self-conscious emotions are defined as pride, shame, and guilt and reflect a child's ability to be conscious of self and to evaluate self (Lewis, 1994). By the age of three years, 23 children have begun to consistently evaluate their own behaviour, incorporate social rules and experiences of pride, shame, guilt, and embarrassment into their evaluation of their behaviour. As emotional knowledge and emotional regulation are developing, they assist a child to attain social and personal goals (Harter). Emotional development universally proceeds in an orderly manner, with complex emotions building on simpler emotions (Izard & Harris; 1995; Izard & Malatesta, 1987; Lewis, 1987; 1992). Within the first three years of life, four major shifts occur in brain organization, with accompanying changes in emotional processing (Sroufe, 1997; Schore, 1994). The first shift begins at 3 months of age, wherein the infant's cerebral cortex becomes functional allowing for beginning emotional differentiation. The second shift occurs between 9 and 10 months of age when the frontal lobes and limbic system mature allowing the infant to interpret emotions. During the third shift, the myelination of the frontal lobes occurs during the second year. This shift allows a child to develop self-conscious emotions and to begin to regulate emotion. As the parasympathetic system matures, a child is able to experience evaluative emotions such as shame (Sroufe; Schore). Building on these neurological shifts, children continue to recognize and process more complex emotions, proceeding to the recognition and processing of opposing emotions. A description of the development of the child's capacity to engage in this process follows. Five Levels of Emotional Development Ages 4-12 Years The work of Harter (1996; 1999) and Harter and Buddin (1987) suggests that children move through five levels of emotional development between the ages of four and twelve. Within these stages, children eventually understand simultaneous emotions, i.e., how they can have two emotions as the same time and two opposing emotions directed at the same target. At the level zero, young children have difficulty understanding conflicting emotions and how two emotions can coexist. When children experience emotions simultaneously, they are 24 unable to understand or acknowledge these two emotions (Harter, 1996). These children develop separate categories for "good" and "bad" emotions. They are aware of simultaneous emotions but only if they are both from the same category, i.e. two good emotions. A child cannot understand feeling contradictory emotions towards the same person. At level two, children, aged 5 to 6 years, develop representational mappings or logical connections between aspects of the self ("I can run and I can jump") with a general tendency to see these characteristics in all or nothing terms. Children describe themselves as they would like to be, rather than as how they actually are. Generally, children tend to focus on the positive aspects of themselves and do not account for their shortcomings. At level three, representational systems develop in middle childhood. Here, as all or nothing thinking declines, a child integrates features of the self into general multidimensional concepts (Harter, 1996; 1999; Harter & Buddin, 1987). Children view themselves more realistically and integrate their positive and negative emotions. They are able to do so, however, only if the emotions are directed at different targets, i.e., I am mad at dad and I am happy with my brother. At level four, older children (12 years of age) are able to describe conflicting feelings toward the same target; i.e. loving their parent and feeling anger towards their parent. Children are able to recognize and acknowledge the opposing emotions that they experience (Harter, 1996). These children can better regulate their own emotions, are more aware of other people's feelings, and adapt their behaviour accordingly. They begin to understand the social and cultural rules that influence the expression of emotion. These children can learn to suppress emotions in order to protect themselves from ridicule or rejection (Harter). In summary, during beginning neurological shifts, from three months of age to three years of age, a child begins to differentiate experience and interpret emotions. Children continue to develop self-conscious emotion, emotional regulation, and evaluative emotions. A child, from 25 the ages of four to twelve, develops the capacity to hold and process opposing emotions (Harter, 1996; 1999; Harter & Buddin, 1987). Between the ages of 6 and 12 years, most children undergo considerable emotional development. Positive emotions originating in infancy, such as joy and contentment, promote mental and physical well being. Joy generates confidence and courage and interest generates engagement with the environment (Izard, 2002). These positive emotions play a role in maintaining close relationships with parents and in developing friendships, and are often generated by play situations. This information is helpful to understand how children relate to and view their parents. Positive emotions can act as a buffer for negative life events (Izard). Emotions, which have typically been described as negative, i.e. guilt and shame, may have positive consequences (Harter, 1999). Guilt and shame, if not excessive, motivate children to adjust their behaviours favourably. Managing negative emotions and increasing self-awareness may contribute to emotional competence and moral development (Harter, 1999). In the next section, I consider critiques of grand theories of emotional development, which have suggested that gender be taken into account. Gender Differences in the Expression of Emotions In grounded theory, the researcher should not assume the analytical relevance of any variable, inclusive of age, gender, race, until it emerges from the data as relevant (Glaser, 1978). Despite this caveat, I have included a brief overview of the influence of gender on children's emotional development. The overview served the purpose of sensitizing me about gender influences and provided a possible framework for understanding children's behaviour during the initial home visit and interview. Research about children's socialization to express emotions has often been focused on the differences between the genders. Traditionally, girls have been considered more expressive of their emotions and to be socialized to be good and nice; boys, who have had to learn to repress their emotions, have been characterized as less relational as they develop (Brown & Gilligan, 26 1992; Levant, 1995; Thorne, 1993). Recent research suggests that girls can use covert social aggression and social bullying in their relationships to gain power, control, and popularity (Simmons, 2002). Relational aggression, which is aimed at damaging the other's self esteem by cruel gossip, shunning and expressions of disdain, is more commonly used by girls (Crick & Grotpeter, 1995; Rys & Bear, 1997). Accepted social customs may not allow girls to learn how to deal with conflict other than by repressing their feelings (Simmons). Such customs can impede girls' emotional development and make them vulnerable in relationships, because they have not learned to handle conflict. Social aggression amongst girls begins in elementary school, continues through high school, and is particularly prevalent in adolescence (Simmons). Cairns, Cairns, Neckerman, Ferguson, and Gariepy (1989) found that adolescent girls used less physical violence, but engaged in covert forms of violence, such as gossip and rumour spreading. Because girls who are different are often singled out for social aggression, girls who have parents with mental illnesses may become targets of social aggression. Simmons suggested that girls interact in a covert network comprised of social aggression masked by the appearance of niceness. This social aggression increases in the adolescent years where competition for popularity increases. The covert social aggression of girls has not been well understood. Much research had focused on physical aggression of boys, which has been partially attributed to androgens making boys more excitable, angry, and stronger or more aggressive (Collaer & Hines, 1995; Marcus, Maccoby, Jacklin, & Doering, 1985). These male hormones contribute to male aggressive behaviour in both the animal and the human species. The research consistently illustrates that boys use physical aggression more frequently than girls and voice approval of its use (Offord, Boyle, & Racine, 1991; Rodkin, Farmer, Pearl, & Van Acker, 2000). Socialization influences, such as gender-specific parental interaction, societal expectations, and media messages, have been held to reinforce these biological tendencies (Kail, 1998). 27 Chodorow (1989) explained gender differences in self worth as arising from the development of emotional experiences. Boys, with mothers as the primary caregiver, go through a stage, wherein they are required to shift their identification from their mothers to male role models. This causes them to go through a differentiation process that is held to be more difficult than the experience of girls who do not have to relinquish their identification with their mothers. This differential pattern leaves females feeling more connected and males feeling more individuated. The growing body of literature on gender differences in socialization suggests that boys are socialized to be assertive, creative, confident, and independent while girls are socialized to be cooperative, friendly, empathic, and obedient (Harter, 1999). Giedd (2004) has observed gender differences in the development of the adolescent brain; female brains mature earlier and the basal ganglion, responsible for executive functions, is larger in the females. Advances in science may provide further rationale for understanding gender differences and similarities in brain development and cognitive and emotional behaviour in children. The preceding gender research has focused on differences; however, Kail (1998) posited that similarities among boys and girls are more prevalent than differences and that gender differences demonstrated in studies generally reflect only small differences, with significant overlap of abilities present in both genders. Harter (1999) also argued that autonomy and connectedness have been too dichotomized and too readily generalized to gender differences. For example, in studies conducted after Gilligan's (1982) work, Harter, Waters and Whitesell (1997) determined that gender difference in levels of voice, as reported by Gilligan, were more directly correlated with levels of support and encouragement, than with gender. Moreover, they claimed that Gilligan's conclusions applied only to a select group of girls. Harter et al. suggested adolescents of both genders who were characterized by a lack of voice had minimal support, validation, and encouragement. Their work suggests that it is important for both genders to remain connected to the parent while differentiating and developing autonomy in adolescence. 28 In this section, I have discussed gender differences and similarities as they relate to the expression of emotions. The literature has dichotomized specific attributes such as autonomy and connectedness, which may be more interrelated and less gender specific than was previously thought. New insights on adolescent brain development, hormonal differences, and social and environmental influences, provide beginning explanations for some differences in gender-specific emotional expression and similarities. I turn now to a discussion of adolescents' emotional development. The Emotional Development of the Adolescent Because the stage of adolescence covers almost a decade, it encompasses a wide range of emotional development. Developmental theories have delineated the periods of development as: early adolescence, beginning with puberty and lasting for several years; middle adolescence, beginning when physical growth is completed; and late adolescence, when most adolescents have generally formed a more stable sense of self (Turner & Helms, 1995). Harter's (1999) work differentiates stages of adolescence, with early adolescence beginning at grade seven, middle adolescence beginning at grade nine, and late adolescence beginning at grade eleven. In early adolescence, abstract thought is compartmentalized and the young adolescent is unable to integrate a self-portrait. This lack of integration is further reinforced by the fact that others may hold varying opinions of the adolescent to which the adolescent is particularly sensitive (Harter, 1999). In middle adolescence, normative cognitive-developmental changes account for shifting self-evaluations, unpredictable behaviours, and mood swings that many adolescents experience at this age (Harter). Middle adolescents often have difficulty integrating opposing impressions of the self and different impressions of the self in varied roles; resulting in confusion, vacillation, conflict, and distress. In late adolescence and early adulthood, these contradictions are largely overcome. With the development of higher order thinking, facilitated by scaffolding, adolescents can resolve some of their emotional upheaval and integrate differing 29 components of themselves (Harter). Children's emotional development in adolescence is correlated with their cognitive and social development, in addition to ongoing brain maturation (Giedd, 2004). Current research on brain maturation posits that the brain continues to grow until late adolescence, perhaps longer (Giedd). While adults rely more on their developed prefrontal cortex for making decisions, research on adolescent brain maturation indicates that adolescents rely on the amygdala, the emotional center of the brain, wherein primal feelings arise (Giedd). Research suggests that the prefrontal cortex is underdeveloped in adolescents, which may account for the impulsivity of adolescent behaviours (Giedd). In addition, the brain continues to grow throughout the adolescent years. This recent information, largely gained from neuro-imaging, holds promise for further understanding of adolescents' emotional and cognitive behaviour. According to Erickson (1980), the major developmental task of adolescence is identity formation. Marcia (1966; 1980) extended Erickson's work on adolescent identity formation by proposing that adolescents undergo a crisis, wherein old values are reexamined and evaluated, and that, from this evaluation, a commitment to other goals, values, and ideologies occurs. Four identity statuses are possible; identity achievement wherein a person has gone through a crisis and committed to ideological, occupation and other goals; moratorium wherein the crisis is ongoing with no commitment to goals; foreclosure wherein the person has accepted a parental or culturally determined commitment without any crisis, and identity diffusion wherein the person is neither in crisis nor made a commitment. Identity diffusion can represent either a pre-crisis state or failure to reach a commitment (Marcia). Research on Marcia's (1966) theory of identity achievement suggests that identity formation occurs later than adolescence; it may change as one ages, vary cross culturally, and be ongoing through the life span (Sato, Shimonska, Nakazato, & Kawaai, 1997; Waterman, 1985). Gender differences have been suggested in the attainment of identity. Some research suggests 30 girls appear to attain resolution of identity crisis at an earlier age than boys (Lytle, Bakken, & Romig, 1997; Moretti & Weibe, 1999). Girls have a tendency to internalize information about themselves gleaned through social interactions, while boys appear to focus on internal sources of information. The context of some adolescents' lives may preclude identity achievement, as it may not be a pragmatic adaptation to their environment (Madan-Swain et al., 2000). Summary of Emotional Development The preceding discussion has emphasized the emotional development of adolescents inclusive of identity formation and gender influences. Identify formation, moral development, and biological maturation of the brain all combine to affect the emotional development of the adolescent. Theories on emotional development are complex, influencing cognitive development and development of self. Emotional development appears to be interrelated with other aspects of development, such as moral development, and less easy to isolate than cognition in developmental theories. In the next section, I will describe and critique Kohlberg's theory of moral development and its contributions to the knowledge on moral reasoning, which serves as a starting point for a synthesis of moral development theory as it pertains to child development. Kohlberg 's Stages of Moral Development Kohlberg (1969) proposed that children progress through a series of stages, (preconventional, conventional, and postconventional), as they develop higher level moral reasoning. In the preconventional stage, children, aged 4 to 10 years, initially make decisions based on what are punishable offences and learn to follow rules when it is in their immediate interest. In the conventional stage, children, aged 10 to 13 years, attempt to live up to the rules and expectations of their families and their social group, by following rules and maintaining good behaviour, i.e., what helps another and is approved. Within the postconventional stage, most children, aged 13 years and older, follow self-chosen values and ethical principles, which uphold individual and social rights (Kohlberg). Adolescents develop abstract thinking skills, 31 within the formal operations stage of cognitive development, which can allow them to engage in hypothetical moral reasoning and internalize values and ethical principles within the context of their lives (Piaget, 1970). There is considerable support, as well as critique for Kohlberg's (1969) theory. His hypothesis, that moral reasoning proceeds along sequential stages, has been verified, with the qualification that most people do not reach the postconventional level (Stewart & Pascual-Leone, 1992; Colby, Kohlberg, Gibbs, & Lieberman, 1983). Kohlberg's stages have been criticized for exclusion of the development of moral emotions within the development of moral reasoning (Eisenberg, 2000). Eisenberg has identified empathy as integral to the process of moral development and advocated for inclusion of age-related abilities in developmental theories to account for emotional regulation. Kohlberg's moral development theory has also been critiqued for ignoring gender differences. Gilligan's (1982) work, although coming under some criticism, suggested that girls operated more from a perspective of care and justice and perceived moral dilemmas differently than boys. Girls also maintained social relationships as part of their moral reasoning. Other research suggested that moral judgments are strongly influenced by education (Carroll & Rest, 1982), but that levels of moral reasoning do not necessarily dictate behaviour (Kupfersmid & Wonderly, 1990). More recent research suggested that moral reasoning is situational rather than developmental and that is it is more contextually influenced than affected by age and stage (Elbedour, Baker, & Charleworth, 1997). Miller and Bersoff (1992) found that Hindu children and adults based their moral reasoning on the value of caring over the value of individual rights and justice, causing them to conclude that moral reasoning is influenced by the cultural values of the participants and that there are differences within cultures as to the highest level achieved. Kohlberg's (1969, 1976) theory has prompted further research and theory development. Although children have developed moral reasoning along sequential stages, their development is 32 influenced by education and culture and the majority of people do not reach the post conventional level (Carroll & Rest, 1982; Miller & Bersoff, 1992; Stewart & Pascual-Leone, 1992). Summary of the Cognitive, Emotional, and Moral Theories Theories of cognitive, emotional, and moral development and recent research on brain maturation emphasize the complexity of childhood development. Classic theories of Piaget (1970) and Kohlberg (1969) have not considered the significant influence of environment and culture or had the advantage of incorporating neuroscience research on brain development. However, it is clear that Piaget's theory of children's cognitive development remains influential (Harter, 1999). Newer theories (Case, 1992; Costanzo, 1991) suggest that there is a significant unevenness in cognitive development. Gender differences related to physiology and socialization are implicated in child development. Awareness that children may develop at uneven rates, within the norms of their developmental stage, provided me with a perspective which allowed me to better understand children's behaviours, to be respectful of individual differences, and to be cautious of any assumptions that I might make regarding individual differences in development. Information processing theory and social cultural theory are more inclusive of influencing factors and individual differences that affect children's development (Rogoff, 1990; Siegler; 1991; Vygotsky, 1978). The literature highlights the complexities of the children's cognitive and emotional development and the significance of contextual factors in children's lives. Given the importance of contextual factors, the contexts provided by society and the health care system, are an important consideration. Thus, I turn to an examination of the context provided by society and the health care system, inclusive of nursing practice. The Context Provided by Society and the Health Care System In the preceding overview of cognitive and emotional development, two consistent themes in research and theoretical development are: the significance of contextual factors in 33 children's lives, and the complexity of children's cognitive and emotional development. Living with a parent with a mental illness predisposes children to experience societal attitudes towards mental illness. Historically, these attitudes have been discriminatory. In this section, I will discuss the general social issues affecting children whose parents suffer from mental illnesses, followed by an overview of the health care system. Building on this, I will describe the current state of psychiatric mental health nursing practice and its relationship to the study population. The History of the Treatment of Mental Illness and the Health Care System In order to situate current mental health services, I provide an overview of the historical developments in the treatment of mental illness. Historical understanding is important for appreciating some of the current issues affecting children and their families, i.e., stigma, family burden, the dominance of the biomedical view, the current policies of care, and the evolution of care. Historically, society has not been accepting of people suffering with mental illnesses. In pre-literate times, those suffering from mental illness were believed to be possessed by evil spirits. This resulted in exorcism and magical cures being used as treatment (Skodol-Wilson, 2004). From early civilization, inclusive of the Renaissance period, people suffering with mental illnesses were isolated and confined; often shackled, brutalized and sent to sea "in search of reason". The late 18th and early 19th centuries witnessed the beginning of humane treatment and, importantly, to the development of psychiatric practice and a classification system of mental illnesses (Boling, 2003; Skodol-Wilson). In the late 19th and 20 th centuries, public mental hospitals provided custodial care and kept those suffering with mental illness separate from general society. Within this era, two significant events of particular interest occurred. The first was the publication of a book by Clifford Beers (1943), which documented his experience of mental illness and his treatment. The second was that his book fostered the formation of child guidance clinics developed to assess and intervene in situations where children had mental 34 illness. These two events were significant, because the consumer's voice was acknowledged and preventative psychiatric active services were developed for children (Alexander & Selesnick, 1966). The early twentieth century was signified by a dramatic shift to psychoanalysis and the beginning of a classification system for mental disorders (Boling, 2003; Skodol-Wilson, 2004; Sodock & Sodock, 2002). By the mid 20 th century, a rift between biomedical and psychoanalytic orientations towards mental illnesses had arisen. Diverse treatments such as family therapy, group therapy, and pharmaceutical therapies, namely new psychotropic drugs were employed. New psychotropic drugs dramatically changed the treatment of mental illnesses, because physicians were better able to control or reduce the symptoms of mental illness for many patients. These drugs allowed patients to return to the community. This was further fueled by the government policy of deinstitutionalization, the process whereby services for the mentally ill were shifted from residential institutions to the community. Patients, who had lived much of their adult lives within institutions, were now shifted to the community (Boling; Skodol-Wilson). The first wave of deinstitutionalization moved elderly people residing in the asylums to nursing homes in the community. Deinstitutionalization continued to depopulate the hospitals and eventually there was a move to avoid institutionalizing the chronically mentally ill population (Bachrach, Talbott, & Meyerson, 1987). The shift to care in community from care in large institutions resulted in significant gaps in service, and eventually a reliance on family care-giving (Morrell-Bellai, Goering, & Boydell, 2000; Picard, 2000). Patients discharged into the community during the first years of deinstitutionalization often had minimal, if any, contact with families due to the fact that they had been removed from the family for many years. Government policies did not account for patients' needs for care required for functioning and only provided care for their basic needs. Former patients were clustered into low income and poor housing and became "ghettoized" (Bachrach, 1984; Krauss & Slavinsky, 1982). 35 Deinstitutionalization and the consequent lack of services for the seriously mentally ill contributed to the problem of homelessness leaving many seriously mentally ill people unable to function in society (Allender & Spradley, 2001). While Canada did not develop community mental health centers for the chronically mentally ill , the Canadian government issued transfer payments to the provinces in the 1960's and the 1970's to build general hospital psychiatric units that were run according to the biomedical model (Freeman, 1994). Unfortunately, these units did not provide care for the chronically mentally ill discharged to the community; instead they treated less ill patients (Wasylenki, Goering, & MacNaughton, 1994). As the older de-institutionalized populations began to die, a second population of chronically mentally ill clients, who had never been institutionalized and indeed may have found it difficult to get psychiatric services, became more evident (Boling, 2003). This population posed challenges, frequently having dual diagnoses (mental illness and substance abuse). The lack of services for these clients contributed to a revolving door syndrome; homelessness followed by jail incarceration (Stein, 1989). Two-thirds of homeless people using urban shelters suffer from some form of mental illness (Canadian Psychiatric Association, 2001). This statistic reflects psychiatric bed closures and the increase in community-based treatment programs. Attention to housing, employment, and financial support is still inadequate in government policy for the mentally ill (Reynolds, 2003). The psychiatric rehabilitation movement has attempted to address some of the deficiencies within the mental health system; however, services for women who have a chronic mental illness have been noticeably unfocussed in terms of their specific needs. For women who are parents of children, there are few resources to assist them in their roles (Mowbray, Oyserman, Lutz, & Purnell, 1997; Nicholson & Henry, 2003). While the philosophical underpinnings of deinstitutionalization appeared to be more inclusive for people with mental illness, the mentally ill were often marginalized in society due, in part, to an infrastructure that did not support their holistic needs (Lamb, 1984; 1993). The 36 biomedical focus on the management of symptoms, while a key component of treatment, has proven inadequate for inclusion of clients into mainstream society and failed to address the social and emotional needs of those suffering with chronic mental illness (Anthony, Cohen, & Kennard, 1990; Howe & Howe, 1987; Liaschenko, 1989; McCabe, 2002). In the 1990's, known as the Decade of the Brain, treatment became more focused on the biomedical model, with emphasis on neuroscience and brain imaging research. Technological advances in brain imaging supported a further shift to a biomedical focus on neuroanatomical explanations of mental illness and its treatment. In response to perceived limitations of that focus, which involved a singular approach to treatment of mental illness and discrimination within the psychiatric mental health system, there was increased interest in recovery from mental illness and consumer empowerment (Anthony, 1993; Deegan, 1995). Formerly, driven by the biomedical model and brain image research, medication was the primary focus of treatment. Some consumers of mental health services became more openly critical of the mental health system and challenged the perceived constraints placed upon them by psychiatry (Deegan). Psychosocial rehabilitation became a focus of care, largely due to consumer and family advocacy groups that insisted on more holistic services (Hatfield, 1984; 1987; 1994). Consumer and family groups, such as the National Alliance for the Mentally 111 (NAMI), Siblings and Adult Children network (SAC) of the NAMI, and the Canadian Mental Health Association (CMHA) have developed in response to deficiencies of services and consumers' perceptions of judgmental attitudes within the mental health care system. In addition, Sroufe (1997) has stated that the guiding assumptions of the biomedical model, namely, that the core etiology of mental illness lies within the organic structure and function of the brain, has strongly influenced the priority of the research questions being studied and has focused attention on medical treatments, namely the use of psychiatric drugs. Since the late 1970s, organized family groups that serve as advocates have become a 37 recognized force within the mental health system. The majority of organized family groups consist of family members with adult children suffering with mental illnesses (Mannion, Meisel, Solomon, & Driane, 1996). These parents have advocated for increased resources, research, and recognition as caregivers for their children (Hatfield, 1994). Groups and services for children living with a parent with a mental illness are not prominent, although the formation of groups such as SAC, suggests that children could have benefited from early intervention services. Families and consumers are becoming more actively involved in planning of services, as evidenced by a local joint initiative of consumers, family and government in developing a vision statement for mental health services (Manitoba Health, 2002). Family members generally consist of parents concerned about their adult children, without inclusion of children being parented by parents with mental illness. The current focus on shorter hospital admissions and community treatment has consigned many people in acute stages of their illness to the community. As such, it is conceivable that their behavior and their situations leave them more vulnerable to the effects of stigma. Although understanding and treatment of mental illness has dramatically improved, several factors contribute to the stigmatization of the mentally ill and their families. In the next section, I enlarge on the effects of stigma. Stigma The stigma associated with mental illness is a strong force, which people and families living with mental illnesses must manage. Stigma is powerfully reinforced by societal values attached to work, independence, money, and prestige, and the social labels that are put upon those who do not attain these goals (Kenny, 2001). Stigma is a multifaceted concept that involves attitudes, feelings, and behaviours; it implies a negative label, discrimination, prejudice, and stereotyping (Kenny). People and families suffering from mental illnesses are subject to stigma from society (Mordoch, 1995; Nicholson, Sweeney, & Geller, 1998a). The stigma 38 associated with mental illness has been linked to decreased employment and housing opportunities, strained family relations, and increased family stress about acceptance in the community (Kenny). Two-thirds of people with a diagnosable mental illness do not seek help due to their perceptions of associated stigma (United States Department of Health and Human Services, 1999). In addition, the World Health Report (2001) stated that globally the stigma of mental illness contributes to human rights violations arising from the inhumane treatment and ignorance surrounding mental illness. Generally, stigma arises from ignorance and lack of factual knowledge, which are compounded by fear of mental illnesses (Angermeyer & Matschinger, 1996). Stigma is experienced internally, in the form of shame and avoiding help-seeking behaviour, and externally by experiencing unfair treatment from others (Sayce, 1998). Consequently, there are likely a significant number of children who are living with parents who have undiagnosed and untreated mental illnesses, and who are at risk to experience stigma, as well as the effects of untreated mental illness in their parents. Families suffer the double burden of mental illness of a family member, because they also experience shame, implications of blame, and limited opportunities to progress (Canadian Mental Health Association, 1991; Reinhard, 1994; Torrey, 1983). There is a strong correlation between low income and high prevalence of mental illness. Although this would suggest that poor people would use psychiatric services more frequently, it is in fact the more affluent, with the lowest prevalence for mental illness that use the services (Manitoba Centre for Health Policy, 2004). Family members are subject to 'courtesy stigma', the stigma experienced from associating with the stigmatized individual (Kenny, 2001). Stigma is an ongoing problem for families of discharged psychiatric patients (Phelan, Bromet & Link, 1998). When families experience the negative consequences of stigma they often feel compelled to conceal their relatives' illnesses. Little empirical research has addressed 39 the problem of the negative consequences associated with stigmatization of family members (Phelan et al.). It is possible that the stigma surrounding mental illness prevents family members from participating in research studies. It is reasonable to suggest that the effects of stigma burden children who are living with parents with mental illness and, as such, research is needed to examine those effects on children. Stigma reinforces the code of silence surrounding mental illnesses (Ekdahl et al., 1962; Gross & Semprevivo, 1989; Marsh & Dickens, 1997; Miller, 1996; Shachanow, 1987), which hinders the resolution of emotional reactions to the mental illness of a family member. Brief glimpses of the former self of the afflicted family member complicate the ongoing unrecognized grief associated with mental illness (McElroy, 1987). The cyclical nature of mental illness exacerbates psychological loss and grief experienced by adult family members (McElroy). Anthony (1973) and Gross (1989) posited that children may experience a chronic sense of loss and alienation from a mentally ill parent who is physically available, but emotionally and psychologically unavailable. The ambiguous nature of psychic loss, where the person continues to live on but changes profoundly, severely alters the relationship of the family and the mentally ill member (Miller). While chronic sorrow has been recognized in parents with children who are mentally challenged (Mallow & Bechtel, 1999), it is not known if children who are living with a parent with a mental illness experience chronic sorrow. As there is no natural termination to grief associated with having a parent with mental illness, it is plausible that children will experience ongoing loss and chronic sorrow. In addition, children often are compelled to take on adult roles in childhood, such as becoming caregivers to their mentally ill parents (Beardslee & Podorefsky, 1988; Marsh & Dickens, 1997). In retrospective accounts from the lay literature some adults report reflecting on and grieving for their lost childhood (Marsh & Dickens). The preceding sections have provided an overview of the history of the treatment of mental illness and the influence of the biomedical model on the treatment of mental illness. 40 While there has been a trend to more holistic care driven by the consumer movement, the biomedical model continues to dominate the mental health care policy, including which services and programs are supported by public funds. The stigma associated with mental illness is a concern for those suffering from mental illnesses, their families, and their care providers. Often stigma increases the difficulty for mentally ill patients and their families to fit into the community and strains their social support networks. Understanding the historical and current treatment of mental illness from a biomedical perspective and the associated stigma provides a context in which to consider nursing practice with mentally ill patients and their families. Psychiatric/Mental Health Nursing Practice Current psychiatric mental/ health nursing practice takes place within the context of the health care system predominantly under the domain of the medical specialty of psychiatry. Psychiatry strongly reflects the biomedical model and as such creates a tension between the typical standards of care in institutions and the more holistic practices of psychiatric mental health nursing (Horsfall, 1997). Historically, psychiatric nursing has fallen under the control of psychiatry, with the medical profession holding the power over patients' treatment (Church, 1985; Horsfall). This dominance has minimized the effects of factors that influence treatment, such as gender, ethnicity, poverty and class; in other words the context of people's lives. Horsfall posited that nurses have become disenfranchised under the dominance of the medical model, have had limited opportunities to improve client outcomes, and have been forced to adopt philosophies of treatment that are not congruent with nursing's holistic focus. To understand the nature of medical dominance over psychiatric nursing, a brief overview of the history of psychiatric nursing is provided. Changes in psychiatric nursing have been dictated by the prevalent biomedical treatment of the era (Peplau 1994). In the early 19th century, untrained nurses and attendants provided custodial care to patients in large mental institutions under the supervision of physicians. Training of mental health nurses began in the late 19 century. At that time, nurses were taught by physicians. Until the middle of the 20 century, physicians continued to control the education of psychiatric mental health nurses with nursing educators gradually assuming an educational role. The publication of the first mental health nursing text was in 1920 (Peplau; Church, 1985). Dr. Peplau, credited to be "the mother of psychiatric nursing" attempted to publish her text Interpersonal Relations in Nursing (1952), which outlined a departure from custodial care and emphasized nursing communication skills. Publication of this text was postponed for three years due to the fact that there was no medical co-author. Her work emphasized that nursing has a much wider base of practice than was prescribed by the medical model that dominated the mental health system. In 1952, regulatory nursing bodies gave the mandate that all students have an experience in psychiatric mental health nursing within their basic nursing programs. At that time, there were increasing numbers of well-prepared nursing educators who began to control the education of mental health nurses. Graduate level courses became available, which led to nursing research and publications on mental health nursing (Peplau). Currently psychiatric/mental health nursing is compelled to examine its practice assumptions and its position within the health care system. Liaschenko (1989) argues that the renewed influence of the biomedical model and advanced technology threatens the relational aspect of care that is a hallmark of psychiatric/mental health. Sills (1977) cautioned against a reductionistic view taken from a model of illness that negates the quality of life associated with mental health. Nursing leaders have called for nursing to be critical of an exclusive commitment to neuroscience research that ignores the social and moral context of health, inclusive of sexism, poverty, violence, prejudice, and access to quality health care (Sills). The preceding description has demonstrated that the development of psychiatric/mental health nursing has been strongly influenced by the biomedical model. This has created tension between nurses' identified goals of practice and the mental health care system. The Canadian Standards of Psychiatric and Mental Health Nursing Practice identify nursing values of mental health promotion and access to services (Buchanan, Harris, Greene, Newton, & Austin, 1998). The nursing role includes advocating for family and clients despite system barriers to enacting advocacy (Goering; 1993; Goering, Wasylenki, Farkas, Lancee & Ballantyne, 1988). Values held by nurses incorporate family, and mental health promotion and have been challenged by the organization of psychiatric/mental health services and the designated role of the nurse within those services (Krauss, 1993). These circumstances may explain, to some degree, the limited effects of the holistic model espoused by nurses to improve the lives of the study population. The organization of the health care delivery system has not emphasized nurses' autonomy; it has not facilitated nurses' efforts to take a leading role in order to intervene with children of individuals who come in contact with the mental health system or to provide primary intervention. While psychiatric mental health nursing practice has achieved more recognition, it has been constrained by the significant influence of psychiatry and the biomedical model over the organization and delivery of health care services. The biomedical model focuses on the identification and treatment of pathology of the individual and continues to exert control over the delivery of mental health services (Horsfall, 1997). Policy for mental health services, such as Mental Health Renewal (Manitoba Health, 2002) is based on a model of individual recovery, rather than a more holistic perspective of the effects of mental illness on patients' lives, which would include children as family members (B. Pageau, personal communication, December 10, 2004 ). Attention to the effects of mental illness on patients and their families will continue to be limited and narrow, if nurses do not take a leadership role in identifying the broader effects of mental illness, including children's unique experiences of living with parental mental illnesses. Empirical work documenting the effects of parental mental illness on children can assist nurses in taking a leadership role in policy development regarding mental health services. 43 While nursing practice provides opportunities for contact with children living with parents with mental illnesses, there are few nursing interventions or studies directly related to this population. Using a qualitative focus group approach, Garley, Gallop, Johnston, and Pipetone (1997) conducted a pilot study (n= 6) exploring the subjective needs of pre-adolescent and adolescent children living with parents with mood disorders. Although their sample size was small, their findings demonstrated that children were looking for more information on mental illness, worried about their parents separating, valued friends as a source of support, and felt burdened related to the parent's illness (Garley et. al.). The researchers recommended that nurses broaden their scope of practice to include children, in order to advocate for and plan mental health services for them. Buckwalter, Kerfoot, and Stolley (1988) conducted a qualitative study (n=9) of children aged 12-20 years, whose parents had mood disorders and were out-patients in a community mental health center. The findings from this qualitative study demonstrated that the children did not openly discuss the family problems or their feelings related to these problems, and that they managed by ignoring the problem, avoiding their parent, and running away from their homes. The researchers urged nurses to broaden their scope of practice to include a family perspective which attended to children's needs for correct information and supportive resources (Buckwalter et al.). Australia is proactive in assessing the needs of children and families living with a mental illness and in developing services to meet these needs. The Tasmanian Children's Project, a collaborative venture between the University of Tasmania's School of Nursing and the Mental Health Services of South Tasmania, attempted to identify existing supports for children and parents. In addition to a survey for service providers and parents with mental illness (n = 399), the researchers conducted interviews with 8 parents and 4 children, three of whom were siblings. The children indicated that they needed more information about mental illness, felt emotional distress related to the parent's hospitalization, and needed help with ways to manage the illness of a parent (Handley, Farrell, 44 Josephs, Hanke, & Hazelton, 2001). Parents expressed concern about their parenting roles and the effects of the illness on their children. To date, the majority of the nursing literature describes children's experiences from the perspective of other disciplines and is not research-focused (Atkins, 1992; Blackford, 1988; Devlin & O'Brian 1999; Gross 1989). While nurses have identified the need to include children living with parental mental illness in their practice, the nursing literature in this areas is scant and programming for children is sporadic at best. Nursing has, however, contributed to publications for family members living with mental illnesses; for example; All Together Now: How Families are Affected by Depression and Manic Depression (Health Canada, 1999); Kids Speak up, Shining Light on Mental Illness; (CMHA, 2000); and Families Speak Up - Shining Light on Mental Illness ( CMHA, 2000). While significant contributions, these efforts offer few chances for nursing to implement comprehensive programs to assist children. Analysis of the broader literature suggests that there are missed opportunities for nursing intervention with families and children living with parental mental illness, and that nursing has an opportunity to be instrumental in providing services. I have considered the historical treatment of mental illness, the evolution of psychiatric nursing practice, and synthesized the nursing literature about children living with a parent with a mental illness to provide an overview of the context within which nursing practice in Canada is situated. In the preceding section, I discussed the dominance of the biomedical model and the failure of nursing practice to address the holistic needs of patients diagnosed with mental illness and their families. The biomedical and psychological literature has informed the development of theoretical concepts, applied to children living with parents with mental illness, and continues to direct philosophies of practice which limits opportunities for holistic nursing. I have considered more current contemporary discussions which are attempting to move the agenda forward to include understanding of children's experiences of living with a parent with a mental illness. In 45 the following section, I will present a critical analysis of the literature about children living with a parent with a mental illness. Research on Children of Parents with Mental Illness Most research about children living with parents with mental illness emerges from psychology and psychiatry and relies heavily on the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM, originating in 1952 has been revised to the Diagnostic and Statistical Manual of Mental Disorders IV- Text Revised (DSM 1V-TR). The majority of the research directed by this perspective has focused on children whose parents are diagnosed with depression, schizophrenia, and alcoholism. To date, the treatment of alcoholism has generally taken place outside of mainstream psychiatric services. Therefore, I chose to limit my literature review to studies on children living with parents suffering from depression, bipolar illness, and schizophrenia, who were likely to be treated within the mental health care system. Because these illnesses have unique presentations, I was interested in the similarities and differences associated with each illness experience, as perceived by the children. While useful for categorizing behaviours and creating a common language between professionals, the DSM has been critiqued for cultural insensitivity and lack of recognition of contextual influences (Sampselle, Bernhard & Kerr 1992). Behaviours that have been labeled as pathological have often been reinterpreted as creative responses to extreme situations, such as incest and domestic violence (Glod, 1993). Critiques of the psychological and psychiatric literature emphasize the importance of seeking the perspective of individuals who are managing life in the context of mental illness, rather than applying external concepts that may not be valid indicators of life experiences. To offset this critique, lay and professional literature is beginning to include personal retrospective accounts of the experiences of growing up with a parent with a mental illness (Hinshaw, 2004; Lyden, 1997). While a considerable volume of literature exists on children whose parents have a mental illness, children's perceptions have generally not been 46 incorporated into this research. For example, no attention has been paid to children's subjective experiences of living with parental mental illness (Garley et al., 1997; Mordoch & Hall, 2002'; Nicholson etal., 2001). The literature about children of parents with mental illness has focused on risks associated with genetic transmission, exposure to parents' pathology, resiliency in the face of parents' pathology, and the effects of multiple elements (Feldman et al., 1987; Musick, Stott, Spencer, Goldman, & Cohler, 1987). Early research efforts identified genetics and risk from exposure to pathology for the purposes of identifying and reducing the prevalence of mental illness in children (Garmezy, 1974). Concurrently, the approach to children shifted from a biomedical disease model to a health promotion model, which resulted in a volume of literature on the strengths of children of parents with mental illness (Fisher et al., 1987). Unfortunately, literature that addressed children's strengths relied heavily on imposed views of resiliency in children and factors that influenced those imposed views of resiliency (Liddle, 1994). Over time, the focus of investigations of children has shifted to multi-causal agents, their interactional effects, and broader determinants of health (Feldman et al.). The health promotion model was intended to develop positive outcomes for children. Unfortunately, shifts to health promotion have not incorporated the perspectives of children who are living with parents who have mental illnesses. Future research endeavors should include children's perspectives to increase understanding of children's outcomes arising from living with a parent with a mental illness and the factors which influence those outcomes. I will now provide a critical analysis of Footnote: Some of the critical analysis presented in this chapter overlaps with this article. Mordoch & Hall, (2002). Children living with a parent who has a mental illness: A critical analysis of the literature and research implications. Archives of Psychiatric Nursing, Vol. XVI (5), 208 - 216. 47 the existing research on children's outcomes associated with living with a parent with a mental illness. Factors Influencing Children's Outcomes Factors influencing children's outcomes have been derived from research measures that are based on the assumptions of the biomedical model. The biomedical model as a paradigm to direct research has filtered children's experiences through diagnostic and behavioural measurement tools. That approach has applied a particular perspective to children's experiences. The complexity of children's efforts to manage the experience of mental illness by family members might be better captured by using qualitative research, which incorporates consideration of the effects of the family system. The factors influencing children's outcomes when living with a parental psychiatric diagnosis will be discussed under the following headings: Emotional Deprivation, Genetics and Environment, Factors affecting Development, and Familial Influences. Although research in this area spans two decades, its applicability is limited by the focus on affective disorders and Caucasian middle class families (Nicholson et al., 2001); findings from these studies do not reflect an understanding of cultural and ethnic differences. Emotional Deprivation The effects of emotional deprivation are related to the argument that early parental interaction with children is a major determinant of their emotional and mental development during childhood (Chidekel, 2002; Gottman, 2001). Emotions arise from both cognitive milestones, such as the development of self-appraisal, and non-cognitive processes, such as genetic predetermination of emotionality and cultural heritage (Izard, 2002). Emotional deprivation through the absence of parental contact in early infancy has a detrimental effect on children (Bowlby, 1980). Children can suffer maltreatment through neglect, indifference, and lack of empathy from 48 their primary caregivers (Harter, 1999). Children whose parents have emotional or psychotic disturbances are more likely to experience emotional deprivation arising from their social circumstances (Kendziora & O'Leary, 1993). Newberger (1973) viewed maltreatment as the inability of a parent to nurture his/her offspring, while Cicchetti (1989) described child maltreatment as pathology within the parent/child relationship. Several child development researchers have found child maltreatment and family dysfunction difficult to separate (Cicchetti; Erikson, Egeland, & Pianta, 1989). Even intermittent emotional deprivation has the potential to cause severe behavioral problems, profound chemical and neural changes of the brain, and changes to the emotion-related physiological functioning of the stress response; these characteristics impede maltreated children's acquisition of emotional knowledge systems (Izard, 2002). Because of the symptoms associated with depression (decreased energy, avolition, depressed affect, and difficulty with concentration) maternal depression affects the emotional responses of the mother to the child, which creates the potential for emotional deprivation. Research on mothers who are depressed points to the inability of some mothers to interact warmly with their children which is influential for children's developmental problems (Beardslee et a l , 1998). The body of research on postpartum depression deals with emotional deficits and attachment irregularities within the mother-child dyad, including emotional deprivation. In a critical review of this literature, Grace et al., (2003) found that these effects were more pronounced in children whose mothers were suffering from chronic and recurrent depression. Recent research suggests that maternal postnatal depression, inclusive of relational difficulties with offspring, is associated with Cortisol irregularities, which are believed to predict major depression in adolescent offspring (Halligan, Herbert, Goodyer, & Murray, 2004). 49 Genetics and Environment Considerable research has attempted to determine whether genetic or environmental factors cause mental illness. My review will highlight key points over time. Garmezy (1974), in his review of research methods for children at risk, noted the early studies of Hoffman (1921), Kallmann (1938), and Doppler (1932) focused on the identification of symptoms and deviant characteristics in the children of patients with schizophrenia. Research on neonates, whose parents had schizophrenia, indicated strong environmental links to pathology (Sobel 1961). Fish and Alpert (1962) studied 13 infants of mothers with schizophrenia. Their study indicated a strong genetic influence on the children's development of pathology. Higgins (1966) found no greater non-adaptive behaviour in children raised by their psychotic mothers when they were compared with children who were reared apart from their parents. Research on children placed in foster homes, as a result of their parents' mental illness, suggested that feelings of rejection associated with being placed in foster homes might have increased their emotional difficulties (Murphy, 1972). Children who are in foster care are generally at increased risk for psychopathology and a range of behavioural and emotional problems, particularly if there are placement changes (James, Landsverk, Slymen, & Leslie, 2004; Pilowsky, 1995). Often children who are placed in foster homes linger in care for long periods of time while decisions are made on their custody status. Generally, children with parents with mental illness are not readily adopted (Jacobsen & Miller, 1998). Although some studies indicated that most children did not develop schizophrenia, children were more likely to develop other pathological conditions (Schulsinger, 1976); research suggests that children of psychotic parents are at increased risk for pathology (Anthony, 1973; Hans et al., 1999; Orvashel, Mednick, Schulsinger, & Rock, 1979). Rates of child psychiatric diagnosis among children who have parents with mental illnesses range from 30% to 50% compared with a 20% rate among the general population (Nicholson et a l , 2001). The specific 50 diagnosis of maternal schizophrenia is associated with increases in mental disturbance in their adolescent and young adult children (Salmon, Abel, Cordingley, Friedman, & Appleby; 2003; Schubert & McNeil, 2003). Controversy exists about comparing outcomes associated with children of parents with schizophrenia with children of parents without mental illness. Several studies have indicated that there is no significant difference in the incidence of pathological behaviour between groups (Beisser, Glasser, & Grant, 1967; Sussex, Gassman, & Raffel, 1963; Weintraub, Prinz, & Neale, 1978). In a 25 year follow-up study, results indicated that children who were reared with their mothers who had schizophrenia were not at increased risk to develop pathology (Higgins et al., 1997). Other research suggests that parental mental illness places children at triple the risk to develop mental health problems (Gammon, 1983; Gershon et al., 1982; Warner et al., 1992; Weismann et al., 1984). The latter findings have implications for the importance of intervening with children early to mitigate any effects of parental mental illness in order to promote mental health among these children. Weissman and Jensen (2002), in a review of community-based epidemiologic studies and longitudinal studies of families with depression, concluded that the offspring of depressed women are at high risk for depression, that depression begins in childhood or adolescence, and that depression is associated with morbidity. Of key importance, their review noted that the majority of depressed adults and children remain untreated. Bleuler (1974) conducted a longitudinal study of 184 children of his patients with schizophrenia. Bleuler's results indicated that 10% of children of a parent with schizophrenia would develop schizophrenia but that those children were not at increased risk for other psychological pathology. His work is important as he recognized children's suffering, strengths, and sacrifices in the context of their adverse circumstances. He was sensitive to factors other than parental pathology and genetics; he acknowledged that unfortunate circumstances, such as malnourishment, could negatively affect a child's development. He attributed the differences in 51 his results from other studies to the fact that he had followed his subjects over a period of years. His depiction of their experience was more complex than that generated from a single research interview which focused on abnormalities (Bleuler). Bleuler's work acknowledged that growing up with parental mental illness placed children at risk for unresolved issues that could affect them in adulthood. Lay literature from the perspective of adults who grew up with parental mental illness (Marsh & Dickens, 1997) has described loss of childhood, unresolved grief, and interpersonal difficulties and supports Bleuler's insights. In contrast to Bleuler's conclusions, the human genome project, which has advanced our understanding of the genetic makeup of humans, has placed significant emphasis on molecular genetic studies and their relationship to pathology (Cowan, Kopnisky, & Hyman, 2002). Molecular genetic research has focused on linkage and association studies, which have attempted to identify specific genes associated with susceptibility to major psychiatric mental illnesses such as schizophrenia, bipolar disorder, autism, and alcoholism (Berry, Jobanputra, & Pal, 2003; Cowan et al; Dick et al., 2004). Generally, these studies provide evidence for gene involvement but have not provided conclusive evidence of specific susceptible genes or about their patterns of inheritance (Duffy, Grof, Robertson, & Alda, 2000; Evans, Muir, Blackwood, & Porteous, 2001; Smalley, 1991). Instead, it is becoming increasingly apparent that the genetic contribution to mental illness is complex. Viewing a single gene as responsible for pathology is overly simplistic. Multiple alleles are usually implicated and account for small variations which all contribute to the illness (Evans et a l , 2001; Rutter, 2000,2003; Smalley, 1991). The molecular genetic research has also suggested that boundaries of some disease conditions have extended the current diagnostic criteria, which include overlap between conditions and more presenting disorders (Rutter, 2001; 2003). Recognition of the complexity of mental illnesses has generally evoked the perspective that both genetic and environmental influences likely contribute to the development of mental 52 illness and that the interactional effects of genetics and environment require further understanding (Berry et al., 2003; Brown, 2003; Riley, 2004; Rutter, 2001; 2003). Twin studies and adoption studies have suggested a genetic vulnerability to major mental illnesses, that is, schizophrenia and mood disorders (Kaplan & Sadock, 1998; Kaplan, Sadock, & Grebb, 1994; Kelsoe, 1991). Research suggests that monozygotic (MZ) twins develop schizophrenia at 4 times the incidence of dizygotic (DZ) twins and at 50 times the rate for the general population. Because only 50% of the MZ twins develop the illness, environmental causes are also likely to be implicated (Kaplan & Sadock). With the mood disorders of depression and bipolar illness, 65% of MZ twins were concordant for developing depression (Kaplan et al.); for bipolar illness, MZ twins were at 4 -5 times an increased risk to develop bipolar illness compared to DZ twins (Kelsoe). Rutter (2001) posits that some of the genetic research has erroneously claimed genetic influences are causal effects of illness when environmental causes may have contributed. For example, while twin studies have demonstrated genetic linkages to the development of psychopathology in children, the research has had limitations in isolating environmental risk factors (Rutter). This has been due to several factors reflective of the complexity of the genetic and environmental risk. The main difficulty in the twin research is dealing with shared environmental effects, the assumption that monozygotic and dyzygotic twins' environments will be equal, and the weak statistical power for assessing gene/environment interactions (Rutter). In addition, twin studies have not always used sound epidemiological sampling and have experienced high attrition rates. When genetic research and twin studies assume that environments of the participants are equal, results that are partially influenced by environment may be erroneously attributed to genetic influence (Rutter). While there has been evidence for more than three decades that major mental illnesses (schizophrenia, bipolar, autism, and alcoholism) have a strong genetic basis, molecular genetic 53 research is only in the preliminary stages of identifying the genes that are implicated in these illnesses (Cowan et al., 2002; Gutknecht, 2001). The complexity of the trajectory of the mental illnesses and of the genetic component of the illnesses suggest that interactional effects of genetics and environment are likely both factors implicated in the development of the illnesses. Factors Affecting Development The timing of parental mental illness, in terms of children's developmental stages, has been identified as influential on childhood pathology. Studies indicated that, the earlier the onset of maternal depression, the greater the pathology of the child (Beardslee et al., 1998; Paffenberger, 1982; Pound, 1996; Welner & Rice, 1988). Wide ranges of critical ages, however, are suggested. Maternal depression before the child is three years of age is a risk factor for reading difficulties by the age of seven (Pound). Unresolved reading difficulties have been linked to later pathology in children, namely conduct disorder and substance abuse (Werner & Smith, 1992). Conversely, Rutter (1966) found that of children who had parents with diverse psychiatric disorders (n=137) compared with controls (n= 592), young and older adolescent children were least vulnerable to parental mental illness. Children who were two years or less than two or who were well into adolescence, prior to the onset of the parental mental illness, were less vulnerable and more able to remain well (Rutter). Rutter also noted disorders in children appeared to be associated with disorders of the same sex parent. In their review of the literature from the past ten years associated with children of affectively ill parents, Beardslee, Keller, Lavori, Stalley, and Sacks (1993) found that children whose parents had experienced depression prior to the age of twenty were themselves at a greater risk for experiencing depression than children whose parents became ill later in life. In addition, the majority of children who suffered depression did not get treatment (Beardslee et al.). Therefore, while children are identified as at risk, they are not receiving helpful intervention. This illustrates the need for continued research to determine helpful intervention strategies. 54 Although, most of the literature now suggests that early onset of parental depression increases a child's risk for psychopathology, Burback and Bordiun (1986) concluded that this is only one of many factors contributing to child outcomes; they suggested that the child/parent relationship could be satisfactory even in the context of the parental illness. Rutter (1978) noted that even in severe pathology, the mother's interaction with the child could be warm and supportive. Anthony (1974) and Kauffman et al. (1979) similarly found that children who were more competent had supportive relationships with their parents despite the parental diagnosis. Their research suggested that outcomes for children of parents with mental illness are complex and to some degree unpredictable. Familial Influences Rutter et al. (1975) found that prolonged marital discord was more damaging to children than parental diagnosis. Rutter (1979) concluded that a combination of identified risk factors (severe marital discord, low social status, overcrowding or large family, paternal criminality, maternal psychiatric disorder, and foster care) influenced the development of psychopathology. Prolonged marital discord exacerbated by poverty, overcrowding, and psychiatric disorder may contribute to parental disengagement from children compounding the effects of parental diagnosis and the development of childhood pathology (Rutter, 1979; 1980). Accumulated life stresses related to the lack of availability of the parent were more influential on childhood pathology than the diagnostic criteria of depression (Beardslee, 1984). Keller et al. (1986) questioned if there was a reciprocal component of depression, wherein the child's depression may exacerbate parental depression. While this study included child interviews, the interviews were directed by the biomedical perspective and based on the identification of DSM-111 R diagnoses. Although the data reflected reciprocity within family dynamics, the authors recommended future research on genetic etiology. A more fruitful approach might be to study dynamics of parent/child interaction that could account for such serious outcomes. 55 Socioeconomic status (SES) has been associated with the increased pathology of children (Escanola, 1972; Nicholson et al., 2001; Pound, 1996). A consequence of living with a mental illness is often the inability to be gainfully employed. In the Rochester prospective longitudinal study, which examined social status, severity, and chronicity of mental illness, a combination of decreased socioeconomic status and chronic parental mental illness placed a child at an increased risk for pathology (Sameroff et al., 1982). When mothers were diagnosed with depression, 87% of the poor children as compared to 40% of the middle class children exhibited signs of depression (Feldman et al., 1987). Conversely, the Ontario Child Health Study (OCHS) (n= 2700 children, age 4 - 16), which is considered the most comprehensive investigation of social disadvantage and children's mental health, suggested that while poor children were more likely to suffer from conduct disorder, hyperactivity, emotional disorder, and somatisation as a group, no consistent SES effects were found on each specific disorder (Offord et al., 1987). Longitudinal studies incorporating qualitative strategies could assist researchers to understand the complex interplay of factors that influence children's health and social outcomes. Factors that a child views as important may also influence the child's level of functioning. For example, Humphrey and Humphrey (1985) contend that children may not have the same choices to manage stress as adults and may be punished for using some of the strategies that adults would use, e.g., leaving the scene. Findings have implicated such diverse factors as family discord; hostile, critical, and blaming patterns of parental interactions with children; lack of maternal warmth; and both parents diagnosed with mental illnesses as increasing the likelihood of the development of children's mental illness. In particular, these factors were associated with the chronicity and severity of parental mental illness, a key variable in childhood pathology (Fisher et al., 1987). Strategies used in the major studies have relied on adults' reporting of child behaviours, structured clinical interviews that yielded psychiatric diagnoses (Kiddie Schedule for Affective 56 Disorders and Schizophrenia, Diagnostic Interview for Children and Adolescents), and instruments, which identified subjective distress based on predetermined indicators. Assumptions underlying testing and measuring procedures, testing in artificial laboratory settings, and incorporating and ignoring bias in sample selection illustrate some of the limitations of the literature. The lay literature now provides many retrospective accounts of children growing up with parental mental illness. Those accounts have expanded our understanding of diverse familial roles that children may acquire to manage the illness of a parent and have underscored the complexity of events that could influence pathology (Marsh & Dickens, 1997). This literature is congruent with recent emphasis on subjective experiences of consumers, families, and children being included in mental health research strategies (Nicholson et al., 2001). Qualitative research that explores the unique experiences of children could allow key issues to emerge rather than imposing preconceived ideas on children's lives. Explanatory frameworks derived from qualitative work can provide new models to explain children's experiences. Resiliency Associated with Parents' Diagnoses In addition to the negative outcomes associated with having a parent with a mental illness, a considerable body of literature focused on the more positive outcomes. The major focus of this research is on the concept of resilience, wherein some children were able to overcome significant adverse circumstances and flourish (Rutter, 1985). Resilience continues to be an important concept, illustrated by the continuing program of research in optimal child development (Luthar, Cicchetti, & Becker, 2000). In this section of the literature review, I will trace the development of resilience research as it relates to children of parents with mental illness and the important contributions of Anthony, Rutter, and Garmezy. This literature provides the opportunity to understand the development of resilience research in the context of my study 57 population. I will provide a critical analysis of the literature under the following headings: children's resiliency, individual characteristics, and interactional factors. Children's Resiliency Lack of consistency in the effects of parental mental illness on child development shifted the research focus to children who appeared to thrive despite their life circumstances. Currently, resilience, formerly conceptualized as an individual psychological trait, is defined as a class of events wherein success persists in the face of barriers (Bartelt, 1994). Prominent researchers in this area (Anthony & Cohler, 1987; Garmezy, 1981; 1987; Kauffman et al., 1979; Rutter, 1985; Werner & Smith, 1982; 1992) coined a variety of terms to describe children who thrived in difficult circumstances. The children were labeled as invulnerable, superphrenic, super kids, resilient, and survivors within the trauma literature related to children. The array of labels reduced the clarity of the term survivor and implied a level of health for children that may have been overstated. Individual characteristics. The individual's ability to resist being engulfed by the illness and to view oneself as separate from the illness was inherent to the concept of invulnerability according to Anthony (1985). Other attributes included being realistically compassionate and knowledgeable about the illness (Anthony, 1970). Children who did not develop problems were of at least average intelligence, possessed an easy disposition that encouraged positive interactions, had affectional ties with a parent substitute, and had an external support system (Werner & Smith, 1982). Garmezy, Masten and Tellegen (1984) emphasized largely individual determinants of invulnerability, such as effectiveness in work and play and a belief that' good' will follow effort and can control fate. Resiliency was based on sexist assumptions and bias in the interpretation of female behaviours. The language was inherently paternalistic. Being male was associated with invincibility (Anthony, 1970; 1974). The assumptions were also based on individual perspectives of psychological determinism that negated systemic issues such as 58 poverty and stigma. Studies often used measures of competence that were not grounded in the children's subjective experience (Bartelt, 1994; Kinsella, Anderson, & Anderson, 1996). Determining resilience from this perspective failed to validate children who were not labeled as extraordinary, although to be ordinary in the extraordinary circumstances was in itself remarkable. Although the characteristics previously linked to positive mental health outcomes for children included supportive relationships, Garmezy et al. (1984) suggested that children be trained in mastery skills to sustain them in adversity. This type of intervention was based on assumptions that negated the societal influences that affected the lives of children. Further, current lay literature developed by adults whose parents were diagnosed with mental illness retrospectively describes their childhood experience. Descriptions portray an outward competence and an inward fragility that never came to the attention of the adult world (Marsh & Dickens, 1997). Resilience and the measures by which it was determined (cognitive and behavioural tests with the underlying values of conformity and achievement) have been challenged within the educational system. Roles that children assume when a parent is ill , i.e., caregiver and housekeeper, may in fact be a form of resilient behaviour, based on the value of family cohesion at the cost of personal achievement. Therefore, a child who drops out of school and is viewed as a failure and non-resilient, may define resiliency from a different perspective, i.e., the child may have sacrificed education to assist the family (Bartelt, 1994). The child living with parental mental illness may not have energy to excel outside of the family roles. An individualistic emphasis on resiliency has the potential to absolve society of its responsibilities and may imply that children who cannot attain resilience are inferior. Labeling children as resilient has the potential to exclude them from intervention efforts (Liddle, 1994). A danger of romanticizing resilience still exists. For clinicians working with children from adverse circumstances, the idea of resilience may inspire clinical hope and positive emotion in otherwise overwhelming 59 situations. The idea of resilient children may enable clinicians to feel useful in situations where change is difficult to effect (Liddle). Work in other areas has suggested that abused children, who were viewed as resilient in their first five years, were not resilient by grade three (Farber & Egeland, 1987). If emotional health, as well as competence is investigated, children may not be as quickly labeled resilient. Studies have not generally addressed the subjective emotional experiences of children. In the critique of the concept of resilience, Kolbo (1996) noted that resilience is a term that has been externally applied by observers, but central to the concept are subjectively defined goals, aspirations and meanings. Bartelt (1994) asks at what point does resilience approach irrationality on the part of the individual caught in such circumstances? Indeed, the defense mechanisms used (denial, distancing, suppression, intellectualization, isolation of affect, externalization, rationalization) by children to manage their situations, have been linked in the lay literature to interpersonal problems in adult relationships (Atkins, 1992; Marsh & Dickens, 1997). Questions arise regarding the face validity of measures of resilience. Do the measures used to capture the concept of resilience actually do so? What is being measured may not be indicative of a child's values and ways of demonstrating resilience. Many of the studies on resilience have used academic measures of competency to capture resilience. Is academic success equated with resilience? Subjective experience is a core component of resilience and to date the research has largely been derived from external objective sources (Bartelt). The deficiencies that have been identified in the measurement of the concept of resilience call for an extended and clearer understanding of the meaning of resilience within the context of children's lives, as opposed to uniform and imposed responses that relate only to specific areas of their lives (Liddle, 1994). There are a variety of contexts within which resilience occurs and likely a variety of characteristics indicative of resilience that are perhaps culturally and class specific. Spring and Zubin (1977) contend that the same skills and dispositions that promote 60 competence do not necessarily promote invulnerability to mental illness. Therefore, research must be interpreted carefully, rather than making superficial claims about children's abilities. Because research has suggested that a balance between an individual's environment and personal coping skills influences resilience, more complex approaches to studying children's experiences are important. Liddle suggests that resilience is found in the narratives of the subjects interviewed. Consequently, it is important to include the narratives of children living with parents diagnosed with mental illnesses. Multi-causal factors. Kauffman et al. (1979) compared the children of 30 mentally ill mothers with a control group of children of well mothers. Findings supported the concept of the super kids who were found to have positive interactions with their mothers, involvement in social relations, and extensive contact with an adult outside of the family. Maternal level of functioning was more important than maternal diagnosis, although maternal depression had the most negative effect on parenting. The Kauai longitudinal study on resilient children and youth is a classic study that has made a significant contribution to the resilience literature by emphasizing the holistic and contextual experiences of children. This study noted that resilience is fostered when a balance between cumulative life stressors, personal attributes, and protective factors (nurturing grandparents, an external support system and individual characteristics as discussed) exists (Werner & Smith, 1982). Although an older study, this study was influential in providing a more holistic approach to factors influencing children's outcomes. Of note, one-third of the children studied developed serious learning and behaviour problems before the age of ten. Identified risk factors were poverty, parental mental illness or alcoholism, serious central nervous system damage, and persistently poor rearing conditions. The majority of children who became criminal offenders had required remedial education by the age of ten. Children with all four factors developed the most problems. 61 Other significant findings were that boys had increased anti-social behaviour, children of depressed parents had increased resilience when compared to children of psychotic parents, and stress lowered resilience while lower socio-economic status increased vulnerability. The study strongly supported multi-causal influences on the development of pathology in children. The study included a sample of diverse cultural groups, and a longitudinal design that followed the participants over a 25-year period from birth to adulthood (Werner & Smith, 1982). While some interview strategies were used, generally the perceptions of children were not considered in the study. Bronfenbrenner (1979) also challenged the focus on individualism by identifying environmental and macro-societal issues that influence human development. He argued that resilience measurements were subject to the researcher's definition of resilience and its determinants. Early studies (Garmezy & Nuechterlein, 1972) on resilient children have been critiqued for underestimating the role of reciprocity and environment and over-emphasizing the child's unique characteristics. Qualitative research is well suited to exploring the subjective experience of children, who have successfully managed their parent's illness, and the complexities of meaning and societal influences, but it has not been undertaken to address those criticisms that persist about explaining health outcomes for children (Mordoch & Hall, 2002). The literature to date generally does not include the children's perspective from their voices. Instead, children's outcomes in the area of resilience have been largely measured by their behavioural and academic competencies from the perspective of others. I have included a review of the literature on people who are parenting in the context of mental illness for two reasons: the first is the paucity of literature on children's perspectives about growing up with a parent with mental illness; and the second is that, in general, children are in relationship with their parents and, therefore, it is important to understand parents' perceptions of parenting within the context of mental illness. 62 Parenting in the Context of Mental Illnesses There has been increased interest in parents with mental illness within the last decade in the social science literature (Hartley & Phelan, 2003; Joseph, Joshi, Lewin, & Abrams, 1999; Nicholson & Biebel, 2002; Ostman & Hansson, 2002). Most literature refers to parents who have serious mental illness and who are mothers; there has been minimal research on fathers who are